Issue 33 2009 US$5.99 Can$6.99 The Autism File covering Autism

Transcription

Issue 33 2009 US$5.99 Can$6.99
The Autism File covering Autism, Asperger’s, ADHD, ADD and other related disorders
Metametrix austism file ad MAY 09.pdf 5/27/2009 3:56:04 PM
AUTISM IS AS UNIQUE AS YOUR CHILD. . .
THE SOLUTION SHOULD BE AS WELL.
Since Autism Spectrum Disorders (ASD) present with an array of symptoms and not one single cause, identifying your
unique treatment protocol can be challenging. Functional laboratory testing allows you to take a multifaceted
approach and helps you to find the key pieces to treatment.
For 25 years, Metametrix has been the industry leader in the development of “Next Generation Technologies” to detect
unique metabolic and toxic imbalances which may lead to health problems. Our testing specifically detects underlying
factors associated with ASD symptoms and provides a plan for managing ASD by optimizing biochemical function.
The GI Effects Stool Profile uses microbial DNA analysis, which
C
M
improves accuracy in identifying the other 95% of bacteria in the
Y
gut that culture tests miss. Metametrix is the only laboratory
CM
using this innovative technology to help determine factors in the
MY
CY
CMY
K
“gut-brain connection” such as:
• Predominant (“good”) bacteria
• Opportunistic bacteria
• Pathogenic (“bad”) bacteria
• Mycology – yeasts such as Candida
• Parasites
• Digestive ability
• Absorption ability
Please visit us online at www.metametrix.com/gieffects to learn more about this important test. Ask about
our clinician referral program to find clinicians in your area that offer Metametrix testing services!
800.221.4640 • www.metametrix.com/AF
Welcome to Issue 33
Polly Tommey
Editor-in-Chief
polly@autismfile.com
Jon Tommey Health and Nutritional
Consultant & Advertising Director
Email: jon@autismfile.com
Dr Carol Stott
Scientific Editor
drstott@autismfile.com
Tessa Worboys
Assistant to Scientific Editor
tessa@autismfile.com
Ann Jones
Editorial Assistant & Accounts
ann@autismfile.com
Ella Barber
Advertising & The Autism Directory
ella@autismfile.com
h
Fiona Mayne
Art Director
maynedesign@gmail.com
e
y
e
Teri Arranga
Editor, USA/Canada
teri@autismfile.com
Curt Linderman
Advertising/Online Editor
curt@autismfile.com
Kimberly Linderman
Back Issues & Directory
kim@autismfile.com
Dorothy Ross
Senior Editorial Assistant
Joanna Brenner
Editorial Assistant
The Autism File
PO Box 144
Hampton
TW12 2FF
United Kingdom
Print Fry Communications, Inc.
800 West Church Road
Mechanicsburg
PA 17055
Tel +44 20 8979 2525
Email: infoautismfile.com
www.autismfile.com
W
e’ve had a huge response following the
coverage of our “Dear Gordon Brown”
campaign in the last issue. Thank you for
all your messages of support and for the widespread
determination that you have expressed for us to carry
on and take the initiative to the next level. As our cover
shows, Autism Mothers are now united and an exciting
movement has taken hold.
We will certainly not be letting up. We have been
inspired by the movement we are witnessing of others
who share this drive to help our leaders and politicians
across the world understand the crisis that autism
represents for so many. We will collectively start to
address this more effectively.
Rather than just talking about solutions, our focus
on showing a new way forward through action through our charity, The Autism Trust, is an
important part of the equation. In parallel with completing the formation of our US charity,
The Autism Trust USA, we are now also in discussion with groups in the Middle East and
South America about creating equivalent models there. Closer to home, we are examining
land options for our first site here in the UK and have stepped up the resources on the
program to finalize the operating model and, very importantly, accelerate fundraising. As part
of this, I’m very excited that we have launched the “Autism Brick” campaign; my Polly’s Piece
article explains more about it … so, watch this space – all over the world.
In terms of the core content of the magazine, we have seen a dramatic increase in the
number of excellent articles submitted for inclusion in The Autism File. I hope you will enjoy
and be inspired by many we have chosen for this issue. However, the amount of material
now coming in has forced us to recognize that we need to capture and share the brilliant
ideas, information, and experiences in more ways than just through the printed copy. So, we
have an amazing new website coming up that will enable all modern online communication
means to be accessed for autism – from Facebook to Twitter and from audio broadcasts to
a new Autism File TV facility. Our first major broadcast will be a premiere of Daniel’s Story –
Silent Suffering, which was apparently too controversial for mainstream TV. We plan to air in
mid-November; please see www.autismfile.com. Autism Mothers should check our “Autism
Mothers” Facebook site for information on our plans for next year’s World Autism Awareness
Day, too.
Our circulation has continued to rise and our subscriber numbers have passed new
milestones, and many people are still contacting us when they find we’ve sold out in the
shops. We’re addressing this, but why not save the search and sign up for our subscription
offers today?
As part of our revamp, we will be moving on to a new style and layout beginning with
our next issue; this will to make readers’ access to the information they seek more easily
accessible – whether as a parent seeking inspiration or as a professional wanting research and
references. As part of this goal, I am delighted to announce that Dr. Carol Stott, BSc, PhD
(Cantab), DipEpid, CPsychol, has joined us as scientific editor to lead our new peer-reviewed
papers section . Carol has contributed a “Call for Papers” article on page 33 that sets out
the submission requirements and review process. We look forward to being a leader in the
publication of new and groundbreaking scientific articles.
Finally, one article from our last issue, “Letting Billy Go,” evoked a massive response as it
clearly touched the thoughts of many parents just like us. One message to add – Billy loves
his new school; he is happy, so we are, too.
I have experienced so many ups and downs through autism, but today I am inspired,
enthused, and delighted to be a part of the vanguard of change … I am proud to be an
Autism Mother – together we really will win.
7 25274 23899 6
The Autism File is a publication of Sensinet Ltd.
Registered in England No 3760939
If you would like to reply to one of the letters or advertisements, have something
to say relating to autism, or would like to tell us about a treatment or therapy and
its results, then contact The Autism File. The content of the letters and articles
submitted for publication in The Autism File reflect the views of the contributor and
not those of the editor/publisher/printer.
The US editor wishes to thank Joyce Hayes Burnett and Brandy Michele for the
Southern California Autism Mothers photo session.
ISSUE 33 2009 www.autismfile.com | THE AUTISM FILE
3
T
A
mong other definitions, a victim
is a person who has been injured.
Victimization also occurs or is
perpetuated when oppression, hardship,
mistreatment, or injury are further enabled.
How many times have we heard of parents
who were told to institutionalize their
beloved toddler, only to later have that child
recover from autism or significantly improve
due to the biomedical treatments pursued by
the parents and the very real hope they held
for their child?
How many times have we heard of parents
who were told that behavioral intervention
and psychoactive drugs were all that could
be done, only to later have that child
recover or significantly improve due to
the biomedical treatments pursued by the
parents and the very real hope they held for
their child?
Hope is real. Healing is real. And parents
deliver for their children.
Many of the mainstream pediatricians,
practitioners, and bureaucratic mouthpieces
who enable further victimization of our
children do this by way of telling us that
there’s nothing that we, as parents or
therapists, can do. This maintains their profit
and their power – their status quo.
Just as we would attempt to effect
a child’s victorious liberation from the
physiological perils and prognosis of
childhood cancer, so it should be with
autism.
Liberation from disease can occur when
the underlying illness is recognized and
respected, and appropriate measures for
restoration of health are effected.
Conversely, if medical practitioners do
not respect the underlying physiology of an
individual, they will make grievous mistakes
that have the potential to cause further
physiological injury or death.
Autism is a whole-body condition.
Contrary to the inappropriate psychiatric
label of autism, we find in study after study
from a wide
range of
scientific
disciplines,
that immune dysregulation,
metabolic dysfunction, detoxification
impairment, and gastrointestinal pathology
are conditions foundational to the
visible manifestations of autism. Just
like with any other patient, mainstream
medical practitioners need to respect the
individuality of the patient with autism.
Autism is not the patient. The patient is a
person.
To say we can do nothing
is to promote helplessness
and hopelessness and
to deny protection and
provision of health.
Teri Arranga
Editor
The Autism File USA
IN MEMORIAM
Michael Blankenship
From the editor:
We mourn the death earlier this year of 15-year-old Michael Blankenship (02/21/94 – 03/10/09)
of Kent, Washington, who had autism, and who died from a drug overdose as a result of routine
dental surgery. Michael’s legacy is to protect other children, teenagers, and adults with autism by
informing the public that individuals with autism have metabolic situations that must be recognized
and respected by medical practitioners of all disciplines, especially when making decisions about the
administration of drugs.
Our love to Michael ... we won’t forget you or your mission.
From Michael’s family:
Michael was a very loving, kind, compassionate, sweet, spunky,
and playful boy ... a boy with great spirit. He was an honorable
young gentleman of strength, perseverance, integrity, pride,
adventure, and fun - who, throughout his short life, made life
choices and lasting impressions with grace and honor. Michael
was a happy guy – a really happy guy. And he was a completely
innocent soul. Even though he was quite young, Michael was
healthy and wealthy in more ways than one, and he lived each
day to the fullest.
4
THE AUTISM FILE | www.autismfile.com He loved people for who they were and how they loved
him. Most of all, Michael was a beautiful soul. He was
the heart and soul of his family and taught those around
him what unconditional love is really all about.
He indeed was an angel boy. In many ways, Michael walked this
world as a mystic without a monastery. The world was his church,
nature was his god of sorts, and he led his life with love, great
spirit, perseverance, and laughter – a beautiful life based on
goodness and kindness.
ISSUE 33 2009
THE AUTISM FILE ISSUE 33 2009
info@autismfile.com
Contents
19
72
102
What’s in this issue ...
4In Memoriam: Michael Blankenship
6Polly’s Piece by Polly Tommey
8Autism 299.00:
Breaking The Code
by Vicki Martin, RN &
Sonja Hintz, RN
14Anesthesia & The
Autistic Child
by Sym C. Rankin, RN, CRNA
19
First, Do No Harm:
Anesthesiologcal
Accidents & Autism
by S.Victoria Walter
22Let My Hindsght Be
Your 20/20 Vision: Autism,
Anesthesia & Fluoride
by Annette Van Dyke, RPh, MPH
24Hyperbaric Oxygen
Therapy (HBOT)
For Autism:
An Introduction
by Kyle Van Dyke, MD
26A Special Kind of Sensory
Integration Therapy:
Proprioceptive or Suit Therapy
by Jeff Bradstreet MD, MD(H), FAAFP
27
Gianna in a Place
of Grace and hope
by Natalie and
David Dragotto
30Social and Academic Inclusion
through Accommodations and
Modifications to Curriculum
by Stephen Shore, EdD
38“That Paper“ by Andrew Wakefield,
MB, BS, FRCS, FRCPath
46Gone In Seven Days: A brief story of
our daughter Michelle’s vaccine injury
and subsequent landmark court case
by Theresa Cedillo
94The Obstacle Course
by Gene Hurwin, OTR, MA, OTR/L
49Coda: The Injustice Continues
by Kevin Conway, Esq.
98A Father’s Tale
by Charles Durham Marshall
51
101Autism Mothers
Subscribe to The Autism File
52In Memoriam:
Professor Edward (Ted) Carr
by Stephen Edelson, PhD
102Autism and the
Military Family
by Lisa Rupe
54A Best Practices Model for
Treating Autism to Improve
Optimal Outcomes.
Behavorial and biomedical
interventions implemented together
by Lauren Underwood, PhD
106Craniosacral Therapy:
Helping Improve Brain Function
by Susan Vaughan Kratz, OTR, CST
61Back Issues
113Update on the Autism
Research Institute
by Stephen Edelson, PhD
62
66
elationship
R
Development
Intervention®(RDI®)
Getting to the Heart
of the Child
by Carmen Augustin, MSW, LCSW
eadly Restraint &
D
Seclusion in Schools:
What you need to know
to keep your child safe
by Lori McIlwain
72Rewards of Friendship
by Laurie Mawlam
76
ision Therapy
V
Can Help Spectrum
Children with Visual
Dysfunctions
by Jeffrey Becker, OD
32The Autism File appoints a
Scientific Editor: Dr. Carol Stott
34The Utilization of Laboratory
Biomarkers to Predict and
Prevent Neuroimmune
Disorders caused by
Environmental Stressors
by Kendal Stewart, MD and Lisa
Hunter Ryden, MT (ASCP), MBA
88Terbutaline Use In Pregnancy &
the Relationship with Autism
Spectrum Disorders
by James P. Reichmann, MBA
81Errata
82
We Are Not Alone
by Alice Shabecoff
86Autism and Grandparents
by Ann Brasher
112Robbie Gets Relief!
by Stephanie Mauck
114Yes! Bullying Can Be
Addressed through the IEP
by Julie Swanson and
Jennifer Laviano, Esq.
116Things Worth Knowing
When It Comes to Food
by Lisa Lundy
122What Will the National
Swine Flu Policy Look Like?
by Vicky Debold, PhD, RN
123Will NIEHS Aggressively Push
IACC’s Research Agenda?
by Theresa Wrangham
125 B
ringing Social
Skills Training
into the
Digital Age
by John M.
Guercio, PhD,
BCBA-D, CBIST
129 The Doctor Is IN
THE AUTISM FILE ADVISORY BOARDS
Scientific Advisory Board: Federico Balzola, MD; Mark Blaxill, MBA; Jeff Bradstreet, MD; Stephen Edelson, PhD; Wendy Edwards, MD; Sonja Hintz, RN;
Julie Matthews, CNC; Lyn Redwood, RN; Harry Schneider, MD; Paul Shattock, OBE; Anju Usman, MD; Andrew Wakefield, MD
Editorial Advisory Board: Marion Blank, PhD; Becky Estepp, Talk About Curing Autism (TACA); Temple Grandin, PhD; Jane Koomar, PhD, OTR/L; Stephanie Lord;
Laurie Mawlam, Autism Canada; Lori McIlwain, National Autism Association (NAA); Jim Moody, Esq; Valerie Paradiz, PhD;
Stephen Shore, EdD; Jill Stacey, Autism South Africa; Kim Stagliano, Age of Autism; William Welsh, Autism Treatment Trust
5
EDITORIAL
By Polly Tommey
T
he past few months have been hectic;
the campaign to meet Gordon Brown
to demand better provision for our
children with autism was very successful
but with it came many more problems. The
phones did and still do ring around the clock
with people from around the world telling
us their stories … all desperate, all needing
urgent help.
Gordon Brown and the Department of
Health have pledged to help, but so far
the action taken has only been focused on
talking internally, holding a large multiparticipant meeting to discuss adults
with autism and determining where the
government can improve services through a
much needed but necessarily slow survey. As
you can imagine, I am very frustrated that
to this point, three months on from meeting
the prime minister, we really haven’t gotten
very far. Apparently there is no money for
autism. The good news is that I am in on
all these meetings. I’ll keep you updated if
anything changes, but, as of this writing,
very disappointingly, there is very little of
substance to report.
The bottom line, as we said before, is we
have to do this ourselves. I’ve decided that
there is no point screaming and shouting;
it gets you nowhere. I haven’t got the
time to constantly bang on the doors of
government, either. They just don’t get it;
they just don’t understand quite how big an
issue we are all facing. But who really does?
Unfortunately, it’s only people like us who
are directly affected and the great many
good friends who constantly help us all. So,
how do we get the point across? It has to
be through real lives, real cases, and real
people.
6
THE AUTISM FILE | www.autismfile.com The calls, e-mails, and letters I’m receiving
are now more worrying than ever.
I was particularly shocked to hear from
so many parents who have children in
prison or secure hospitals. One lady told
me that her profoundly deaf and autistic
son was now sectioned for a minimum of
six months without the right to appeal in a
secure hospital after a series of increasingly
devastating incidents that simply started
with her son trying to communicate with
a couple of 13-year-old girls about his
car magazines. The story is long and
complicated, but there is no way that this
young man should be locked up halfway
across the country from his home and away
from his supportive and loving parents. He is
frightened and confused; he has lost a huge
amount of his body weight from the stress
and doesn’t understand what he has done
wrong or why he is there. It is beyond belief
that during this dreadful experience, police
even handcuffed him for a prolonged period
when arresting him, which prevented him
communicating through his only means of
sign language. How do you even start to deal
with this as his parents?
Another mother talked to me about her
son who is in mainstream prison. He lashed
out at someone in the street, which led to his
conviction. His mother says he didn’t and still
doesn’t understand even though she knows
he has done wrong. He needs help, not
prison. But because he can’t speak and acts
in an odd way, other inmates have presumed
he is a pedophile and, consequently, he is
being abused and severely bullied. Imagine
being in his mother’s place now.
The list goes on … there are so
many cases of shocking and completely
Our charity, The
Autism Trust, will be
investigating this
further and demanding
change to see this deeprooted and immensely
damaging discrimination
addressed.
unacceptable situations. No one with autism
should be in prison or locked away when
the reasons for their actions are simply their
autistic condition.
This is discrimination on an enormous
scale. It is also the area that I am now
passionately campaigning on to make
change happen.
Why? Because many of these stories
send shivers through me. Many of those
in trouble could so easily be my Billy in
a few years time if he is not given the
right support in the future. The statistics
show the number of people in prison with
autism in the UK is far higher than should
proportionately be the case. I suspect
this also applies in prisons and secure
establishments worldwide. Our charity,
The Autism Trust, will be investigating this
further and demanding change to see this
deep-rooted and immensely damaging
discrimination addressed.
My work with The Autism Trust is now
more determined than ever. We will build
new futures, and we will change the way
that adults with autism are treated. Most
importantly, others will see, when given
ISSUE 33 2009
the chance, how well-supported people
with autism can contribute so much to the
civilized society we all want to be a part of.
The good news is that so many of you
want to help us build the first Autism Trust;
and so many others want to build equally
safe futures for their children, too. As a
result, The Autism Trust is now growing by
the day and is already teaming up with many
other existing autism charities worldwide
to work together towards delivering better
services for people with autism and their
families. Our recently formed charity in
America, The Autism Trust USA, and our
principal organization here in the UK are
both now looking at land options where our
first centers of excellence will be built that
will train, educate, and provide a bettersupported future for people with autism to
fulfil their potential. Tomorrow we want to
see more Autism Trust centers being created
internationally.
A core part of our fundraising in each
country will come from the ground up.
Each and every one of you can now help
us achieve this goal by becoming part of
our “Buy a Brick for Autism” fundraising
campaign. Look at our website, www.
theautismtrust.org.uk, see our plans, our
targeted locations, and play your part to
making a real difference with your Autism
Bricks despite the apparent government
inaction to date. Through our site, you can
watch The Autism Trust grow. Your brick will
help build the future that our children really
need.
Despite my frustrations with the
immediate response from our prime
minister and his team, I will not give up
on the fight to force autism higher up the
political agenda. We are building a very
strong team here at The Autism File. We
have many plans and exciting projects that
people are working and reporting on from
around the globe. So, please do look out for
our redesigned and enhanced Autism File
website (www.autismfile.com), which will
be launched at the end of October. I think
you will love what we are going to do!
Be a Part of The Autism File Community ...
 Contribute to the autism debate
 Keep informed about latest developments
 Share your experiences, your pictures, your frustrations, and your successes
 Chat with other readers and contributors
The Autism File magazine is building a new web presence. We have a Facebook
group and pages for Autism File Information, Autism Mothers, Supporting
Dr. Wakefield’s Research, Brothers and Sisters Online, Fundraising efforts,
the International Conference and Autism File Science.
And you can follow us on Twitter. All this, and a new video channel too!
Find out what it’s all about at
www.autismfile.com
7
BIOMEDICAL
Autism 299.00:
Breaking the code
By Vicki Martin, RN and Sonja Hintz, RN
Paradigm Shift: Mental or Medical?
Vicki Martin, RN (above), is the parent of a 13-year-old child with
autism. She graduated from Rockland Community College Nursing
Program in 1981 and spent the majority of her early nursing career
specializing in oncology. She has a BA in International Relations from
Marymount Manhattan College and is interested in human rights
issues, especially as it pertains to people affected by autism. Vicki
has used the Defeat Autism Now! approach for over twelve years and
specializes in helping parents negotiate the maze of available options
to choose the most effective autism treatments. She is certified in
multiple educational interventions for spectrum disorders and is
a strong advocate for all individuals with autism, especially those
more severely affected. Her own daughter, Julia, who is nonverbal,
recently found her “voice” by using Soma®RPM (Rapid Prompting
Method), and her health is greatly improved as a result of biomedical
interventions.
Sonja Hintz, RN, BSN (right), has worked with children with
disabilities since the age of 12. When she was 16 years old, she
began working in group homes as a residential counselor for five
years. In 1988, Sonja graduated from Marquette University’s nursing
school. After graduating, Sonja worked as a public health nurse, a
psychiatric nurse, and a neonatal intensive care nurse. With the birth
8
THE AUTISM FILE | www.autismfile.com of her second child, Sonja was compelled
to reevaluate her traditionally-based
medical paradigms to meet the needs of
her son, who was on the autism spectrum
by the age of 3. Through the use of a
therapeutic diet, homeopathy, herbs,
vitamins, essential oils, and chelation
in addition to many other therapies, he
recovered. For the last ten years, she
has applied what she has learned to help
other children improve their quality of
life.
We would like to hear about the experiences of other parents in
obtaining appropriate medical care for their children. We would like
to know about any organizations that are working on this important
issue. In future articles, we will address how the coding of autism
affects reimbursement rates, the politics of expanding autism as a
medical and behavioral disorder, and how research is affected by
DSM-IV psychiatric disorders versus ICD9 medical disorders. We
welcome your suggestions for future topics to be explored. Please
email us at autismbreakingthecode@yahoo.com.
ISSUE 33 2009
T
his article is the first in a series
about two nurses’ experiences
seeking treatment for their children
with autism. The goal of this series is
advocating for the reclassification of
autism as a medical disorder. Autism
needs to be seen accurately as a disease
that has biological underpinnings
that contribute to the behavioral and
cognitive functioning of the individual
with the disease. The Diagnostic and
Statistical Manual of Mental Disorders,
Fourth Edition, Text Revision (DSMIV-TR) defines autism as a behavioral
disorder. Autism, as a mental health
disorder, is conceptualized as a set
of behaviors to be modified and/or
extinguished. When autism is defined
strictly as a mental health disorder, it
implies that a general medical condition
does not exist. We must substantiate
the need for a paradigm shift; autism
is best understood and treated when
we move away from a mental health
model and instead embrace a multisystem disease model that affects each
individual differently. Redefining autism
as a medical disorder will allow for a
continuum of care, better treatment,
more accessible insurance and Medicaid
reimbursements for medical care, and
more aggressive research.
Currently, there exists a flurry of
opposition to viewing autism as a disease.
It is not our intention to be disrespectful
to a community of individuals who want
to be accepted for their neurodiversity.
We respect the autism rights movement
led by those on the spectrum themselves.
It is understandable that people who
clearly do not have a developmental
disability or who do not view themselves
as “sick” do not want this disorder to be
seen as a disease. However, other mental
health symptoms, such as obsessive
and compulsive behavior and tics, have
benefited from a medical evaluation for
origins related to Streptococcus or other
infections (see pediatric autoimmune
neuropsychiatric disorders associated
with streptococcal infections [PANDAS]
and pediatric infection-triggered
autoimmune neuropsychiatric disorders
[PITANDS]). In addition, anxiety disorders
are also evaluated for underlying medical
conditions, such as high blood pressure,
ISSUE 33 2009 The right to receive medical treatment and evaluation does
not detract from the value or the individuality of the person
diagnosed with autism.
congestive heart failure, and vitamin B12
deficiency. The right to receive medical
treatment and evaluation does not detract
from the value or the individuality of the
person diagnosed with autism. Rather,
their disorder is maintained in a medical
model and treated accordingly. For
example, a child’s (or adult’s) inability to
speak is framed as a symptom of a severe
problem affecting the brain. The medical
model allows treatment and does not
categorically stigmatize the individual.
Vicki’s Story
Speaking as a parent of a nonverbal
child: yes – I want a cure! So does my
child who desperately wants to speak
with her mouth and not just with her
communication device. Wanting medical
treatment for a child’s disease is natural.
I do not see my daughter Julia’s lack
of language and most of her other
autistic symptoms as a difference or as
“neurodiversity,” but rather as a severe
brain problem that one day, I hope, will
be understood and cured.
One major issue faced by families
caring for high needs children involves
decisions surrounding hospitalization
when a child is in crisis. I will illustrate
this point by sharing a very painful time
in our family’s life when Julia was 8 years
old. The statements below are taken
directly from my appeal letter to my
insurance company to request coverage
of plasmapheresis for the treatment of
PANDAS:
“On November 25, 2004, Julia exhibited
an acute onset of severe obsessive and
compulsive symptoms which included the
following: circular pacing, compulsively
repeating 3-4 actions such as knocking
hard on tables, washing hands, turning
the light switch on and off, dragging her
foot, touching walls or other surfaces,
etc. She would knock her knuckles so
hard it caused bleeding. In addition,
she complained of headaches and joint
pain and she cried continuously. Her
heart rate increased to 170 BPM, and
she had a rapid, hyperventilating type of
breathing, which resulted in dry, cracked
and bleeding lips. During these episodes,
Julia did not eat, drink, and slept less than
two hours a night. She could not relax her
muscles enough to urinate and suffered
with constipation because nothing in her
GI tract was moving.”
I went on to describe how the shot of
Rocephin™ (antibiotic) she received in
the pediatrician’s office took away her
“psychiatric” symptoms for a period of
10 days. We started our journey to help
our child at our local, renowned hospital
(medical) for children. They would not
treat her and referred me to a psychiatrist
who wanted me to admit Julia to an
inpatient psychiatric center. I told him
about the antibiotic helping her symptoms
and suggested a workup for PANDAS. He
had heard of this disorder but completely
dismissed it because she had autism, and
he said this was typical behavior that he
saw all the time. I asked when I would get
my sweet autistic girl back, and he said
probably never. He refused to refer her
to be worked up medically or to consider
any other possibilities, even though he
did not know her before this episode. It
was as if he didn’t believe me about the
abrupt change in her behavior. I was not
comfortable with inpatient psychiatric
hospitalization, but I was so tired, and the
stress on my husband and two sons was
enormous. Seeing what this was doing to
my other children forced me to consider
this hospitalization. So, I asked what they
would do to treat her in the hospital. I
was told she would have group therapy,
art therapy and, of course, medications
www.autismfile.com | THE AUTISM FILE
9
BIOMEDICAL
to help with her symptoms. I said, “Group
therapy for a nonverbal child, how
ridiculous.” At that point, she was not
communicating on the letterboard and
would answer questions if she was given
written choices, but the staff was not
trained in her communication method.
Upon questioning the intake nurse, it
was clear she had no idea about severe
autism. In addition, they would not let
me stay with her even though they could
not communicate with her and admitted
that the staff had limited experience
with autism. After further investigation,
I learned that if I didn’t agree with
the medication management or other
therapeutic measures, they could refuse
to discharge her. The hospital could
keep her as an inpatient and override
my parental wishes if, in their opinion,
she was a danger to herself or others.
If I accepted their help (and I was sooo
tired; I sooo wanted help) I would, in
effect, waive my parental rights. They
could medicate her, zone her out, and I
would have nothing to say about it. (If
she were in a non-psychiatric hospital, I
would be able to stay with my little girl
and monitor the treatment.) Unwilling to
take that risk, my husband and I chose
not to hospitalize her. We kept Julia at
home, and we took turns keeping her
from hurting herself, making her drink
10
THE AUTISM FILE | www.autismfile.com sips of fluid, take bites of food, and so
on. The daily vigil of witnessing my child’s
pain and being helpless to stop it was
the most excruciating experience of my
life. This was far worse than the autism
diagnosis and her lack of developmental
progress. We had no choice but to give
her the 1:1 care that she needed 24/7 as
we continued to search for help.
I made the rounds in that same local,
specialty hospital for children: neurology,
immunology, and rheumatology – all
to no avail. I finally went to an out-ofstate doctor trained in the Defeat Autism
Now! approach for an intravenous
immunoglobulin (IVIG) treatment, and
it worked. Julia completely returned
to her normal self, but, unfortunately,
most of the effects wore off in a month.
Her case was severe, and she needed
more aggressive treatment. It was very
expensive and not covered by insurance.
How could I fly out of state and pay for
this treatment every month? Our family
went through a severe crisis that year
with these episodes coming and going
over a period of nine months. I finally
found a physician at another local medical
hospital who was not prejudiced about
autism and the behaviors associated
with it. He saw my child as any other
child in need of help for an autoimmune
condition. I won my insurance appeal
and my child received the appropriate
medical care she so desperately needed,
and through a series of plasmapheresis
and IVIG treatments she returned to her
sweet self (no thanks to our local big
medical center specializing in “excellent”
care for children).
Even though the cause of this
disorder is said to be unknown, there is
no excuse to ignore the medical needs
of children because, somehow, these
behaviors are viewed as “normal” for
people affected by autism. A sudden
change in behavior can indicate an
infection or other environmental insult.
In the medical model of disease, there
are variations in how a disease affects
a given population. For example, in
diabetes there are “brittle” diabetics, and
in epilepsy at least 20 percent of people
are considered “intractable” (don’t
respond well to medications). These
variations drive research and a more
aggressive treatment approach. Like the
above diseases, autism is a multifactorial
problem that affects some worse than
others. Many people regard autism
as a spectrum of disorders, and many
experts feel that there are a variety of
phenotypes, with genetic predispositions
and environmental factors converging
to affect different children in different
ways.
ISSUE 33 2009
Autism is clearly a spectrum disorder.
A diagnosis of Pervasive Developmental
Disorder-Not Otherwise Specified versus
Autistic Disorder implies very different
levels of abilities. Many children diagnosed
with Autistic Disorder who have received
behavioral treatment for their condition
have had documented improvements in level
of functioning. However, biology impacts
psychology. To not treat the comorbid
medical conditions of this disorder is neglect.
Therefore, in supporting the disease model,
proper medical care must be received by
those who need and deserve it. Autism
spectrum disorders present with many
behaviors. Self-injurious behavior (SIB) is
looked at in the mental health model as a
behavior that needs to be extinguished. As
medical clinicians, we see this behavior as
a medical symptom, a self-expression of
pain experienced by our patient. Common
medical practice looks carefully at signs and
symptoms the patient is experiencing. This
leads to a “rule out” of underlying medical
problems in order to diagnose and treat
that medical condition. In mental health
disorders, which currently include autism,
the focus is on the behavior only. That is
akin to treating the depression and anxiety
that accompanies a diagnosis of multiple
sclerosis and not treating the demyelination
of neurons in this progressive disease.
In autism, medical conditions often
manifest as behavior. Many parents we talk
to in our practices believe underlying medical
conditions negatively – and profoundly –
impact their children’s quality of life. These
underlying issues can hinder educational
and other vital brain retraining programs the
child is involved in. Educational therapies
accompanied with biomedical interventions
allow for a better prognosis than a single
strategy can provide. Improved quality of
life and health are the goals. If we change
our paradigm, we can alter our treatment
and dramatically improve outcomes for
individuals and families affected by autism.
To not treat the comorbid medical
conditions of this disorder is
neglect. Therefore, in supporting
the disease model, proper
medical care must be received by
those who need and deserve it.
ISSUE 33 2009 Sonja’s Story
Our experience is somewhat different
from Vicki’s and Julia’s. When Alexander
was two and a half years old, I was told
by leading experts that my son would not
improve and that I needed to prepare for
his future institutionalization and accept
him as he was - autistic. I felt in
my heart that he was medically
ill. He lost weight, his
muscles were wasting, and
he lost speech. I would find
him spending time lining up
toys and spinning objects
instead of playing with
them. As a mom first and a
nurse second, I didn’t see his
behaviors as needing shaping or
therapy; rather, I believed they were
his inner expression of biology gone
awry. When he had his first endoscopy
and colonoscopy, he was found to have
eosinophilic esophagitis, pancreatic
insufficiency, and lymphoid hyperplasia.
Further testing revealed a carnitine
deficiency, increased oxidative stress
around the mitochondria as evidenced
by a muscle biopsy, and mildly abnormal
EEG changes. I then was advised to
place a G-tube in Alexander so that he
would receive “proper” nutrition. God
had another plan for me. I had been to
many appointments where I had glanced
at an article written by Karen
Seroussi regarding the glutenfree/casein-free diet and
the positive influence this
had on her son. At first, I,
being of “sound medical
mind,” could not believe in
such information. However,
nothing else was working, so
I thought, “Things cannot be
worse than they are now, what
do I have to lose?” After many years
of biomedical treatment, I am proud to
say my son is no longer on the spectrum.
Had I not seen him as sick, I would not
have looked for medical interventions
that brought him back to health.
Currently Alexander is 12 years old and
is even able to share what he remembers
about being autistic.
After many years of biomedical treatment, I am proud to say my
son is no longer on the spectrum. Had I not seen him as sick, I
would not have looked for medical interventions that brought him
back to health.
As nurses, we believe that many autistic
behaviors are self-protective and/or are
reactions to the biological processes that
are occurring within the individual and
that these behaviors develop because
the person with autism is attempting to
solve an underlying medical problem.
For example, posturing (bending over
chairs, excessive squatting, pushing on
the stomach, etc.) prior to and/or during
the process of having a bowel movement
is a reaction to constipation or pain due
to evacuation (pooping). Encopresis
is defined in the DSM-IV-TR as an
elimination disorder that involves having
bowel movements in inappropriate places
(e.g., clothing, floor, etc.) that occurs in
individuals who are four years of age or
older and “is not due exclusively to the
physiological effects of a substance (e.g.,
laxatives) or to a general medical condition
except through a mechanism involving
constipation.” However, the behaviors
associated with encopresis (e.g., digging
in the anus and fecal smearing) can be the
result of the discomfort associated with
liquid stool passing around a fecal mass
located in the large intestine. Even though
it is accepted by the medical community
that constipation is associated with this
behavior, constipation is often interpreted
as a psychological – not medical –
condition. As explained above, these
problematic behaviors often originate
as the result of a medical condition. The
child attempts to solve the problem of
constipation or impaction through rectal
digging to remove hard stool or perhaps
scratch the itch associated with a yeast
infection. These behaviors are then
11
BIOMEDICAL
It is medical neglect, however, if a child is not referred for an
evaluation of possible causes of behaviors that could have
their origins in medical problems such as gastrointestinal issues,
infections, underlying seizures, etc.
reinforced because, in the child’s eyes, the
behavior brought a relief of symptoms. As
a result, the behavior persists even when
the original problem is resolved. When this
maladaptive behavior occurs, therapists
attempt to extinguish the behaviors using
behavioral modification strategies.
It is medical neglect, however, if a
child is not referred for an evaluation of
possible causes of behaviors that could
have their origins in medical problems
such as gastrointestinal issues, infections,
underlying seizures, etc. As nurses caring
for these children, often with minimal
support from traditional medical centers,
we see the pain and hardships families
face trying to navigate medical treatment
for their children. We see the comorbid
medical problems not as a coincidence, but
as part of this disease model called autism.
Granted, medical assessment of these
children is difficult due to communication
problems, altered sensory processing
systems, muted cues, and social
interaction impairments. With proper
training and experience, however, it
is possible to gather a great deal of
information about the internal issues
facing the child. Additionally, laboratory
and other testing must be approached
differently and “less is not more” in this
regard. For example, a gastrointestinal
specialist may take a “wait and see”
approach with a child who communicates
normally and hesitate to do invasive
testing with a set of symptoms including
intermittent abdominal pain and diarrhea.
On the other hand, a child with severe
autism deserves an aggressive evaluation
of possible underlying medical problems
because of their inability to communicate.
High pain tolerance often accompanies
an autism spectrum diagnosis and can
mask inflammation and other problems.
A full medical evaluation is not possible
using the ICD9 autism code of 299.00 due
to this being a psychiatric diagnosis code.
This psychiatric diagnosis, for the most
part, precludes medical testing – often not
even an EEG. There is published research1
that 60 percent of children with autism
who have no evidence of clinical seizures
have abnormal EEGs and may benefit from
anti-seizure medication. However, a child
cannot be referred for an EEG and receive
insurance reimbursement under the autism
diagnosis code of 299.00. Furthermore,
as an ICD9 code, 299.00 is a red flag; if
paperwork is submitted with 299.00 as a
primary diagnosis, then the claim will be
denied due to the fact that it is considered
an untreatable condition.
Headaches would be covered, but how
do we know the child has headaches
if they cannot communicate? If head
banging could be seen as a symptom of
pain, then the test would be justifiable;
however, in the mental health model, it
is not connected with pain or looked at
in that way. Excessive self-stimulatory
behavior could be a response to pain as
can be pacing, anxiety, and other so-called
“mental disorders.”
So, on the basis of “the code,”
practitioners will not give children with
autism a thorough diagnostic workup
and insurance companies will not cover
important medical tests.
As nurses in the field of biomedical
intervention, day after day we witness the
pain and often progressive nature of this
disease. We did not develop our skills in
school or at the hospital; instead, we had
our own affected children who required
our help. We as parents and nurses were
forced to look at the current medical
system. What smacked us in the face
when our children were diagnosed was the
utter realization that there was no medical
treatment for autism. We were living in the
midst of the “best medical hospitals,” yet
the diagnosis of autism created a chasm,
separating our children from available
medical care. The experts said our children
didn’t need medical care. As a result, there
was little help for their distress, pain,
allergies, eczema, diarrhea, constipation,
inability to sleep, disabling headaches,
and seemingly irrational behaviors. Why?
The current mental health model does
not treat underlying medical conditions.
Remember autism is currently coded as a
“mental health disorder.”
Due to the lack of a more appropriate
classification and coding, for the
mainstream medical practitioner there
is no concern about medical negligence
and no reason to treat an “untreatable”
condition such as autism. The comorbid
medical conditions of autism have not
been clearly defined by medical standards
of practice. In cancer, a disease that has
no known discrete cause, treatment is still
offered. If you ask any parent about their
autistic child’s health, they will recite a
list of conditions. Autism currently affects
vast numbers of children, and we need
to start treating the comorbid medical
conditions – not solely with psychotropic
medications (which do not address the
comorbid conditions and often have their
own adverse effects) but with appropriate
medical treatment targeted to that
individual’s problems.
It is vital that we redefine the current
code 299.00, Autistic Disorder, and break
the bias of autism as an untreatable
condition.
References
Chez MG, Chang M, Kresne V,
Coughlan C, Kominsky M, Schwartz A.
2006. Frequency of epileptiform EEG
abnormalities in a sequential screening
of autistic patients with no known
clinical epilepsy from 1996 to 2005.
Epilepsy Behav 8(1):267-271.
1
It is vital that we redefine the current code 299.00, Autistic Disorder,
and break the bias of autism as an untreatable condition.
o
M
12
THE AUTISM FILE | www.autismfile.com ISSUE 33 2009
for our children there’s
only one thing we
wouldn’t give.
up.
THE 2009 NATIONAL AUTISM CONFERENCE
HOPEISM. NOW AFFECTING 1 IN 100.
THINK AUTISM. THINK CURE.
R
We’re often told that autism is a gift. Well, at the National Autism Association, we wholeheartedly believe our children are
actually the gift. Autism? It’s a word. A label. A diagnosis. A set of symptoms that can keep a child from speaking, socializing,
staying safe. It’s why four years ago, we brought together the nation’s leading autism experts and researchers to share tips,
trends, tactics, and information with parents, therapists, doctors and relatives. And it’s why in 2009, we’re covering even
more topics with individualized attention. Because the gift is our children. Getting the information we need to help them?
That’s called hope. Please join us in Fort Lauderdale for another inspiring and empowering four-day event. After all, we’d
give a lot of things for our children...but we’ll never give up.
1 1 . 1 2 . 0 9 - 1 1 . 1 5 . 0 9 | H YAT T R E G E N C Y | F O R T L A U D E R D A L E | S P O N S O R E D B Y O X Y H E A L T H , L L C
NOW REGISTERING AT NATIONALAUTISMCONFERENCE.ORG.
our other programs and services...
FA M 1 LY F 1 R S T
MARITAL SUPPORT FOR THE AUTISM COMMUNITY
ISSUE 33 2009 | FOUND |
AN AUTISM SAFETY INITIATIVE
HELPING
HAND
|Financial Aid for Autism Families|
|
>
+
PROGRESS RESEARCH FUND
promoting autism treatments and recovery
13
BIOMEDICAL
ANESTHESIA
The Autistic Child
By Sym C. Rankin, RN, CRNA
Sym C. Rankin, RN, CRNA, is a graduate of the
University of Southwestern Louisiana and the Charity
Hospital School of Nurse Anesthesia (New Orleans). As a
practicing anesthetist for over 25 years, she has witnessed
an alarming increase in chronic and autoimmune diseases.
Those observations became less academic and more
personal after her son was diagnosed with autism. Her
T
his article represents my educated
observations as an experienced
nurse anesthetist who also happens
to be the mother of a child on the road
to recovery from an autism spectrum
disorder (ASD). I am also a practitioner
taking care of autistic children, so I look at
these issues from a different perspective
than my anesthesia peers. The following
observations suggest a need to take heed
of certain issues that might have an impact
on the delivery of anesthesia in individual
cases and also suggests a need for rigorous
study of the potential problems autistic
individuals may have when undergoing
anesthesia.
As a practicing anesthetist for over 25
years, I have been in a position to observe
trends in the patients I help treat. In recent
years, I have seen an increase in children in
the operating room for various procedures.
A disproportionate number of those
children have diagnosed developmental
delays and behavioral problems in addition
to their medical problems. There are
no available statistics to quantify the
numbers, but my anecdotal observations
tell me that children need anesthesia in
numbers that would have shocked us a
decade or more ago.
14
THE AUTISM FILE | www.autismfile.com son’s journey of recovery led to Sym’s realization that
mainstream medicine is far more interested in merely
treating symptoms than in asking the difficult questions
of why those symptoms exist. She recently joined the
practice at True Health Medical Center in Naperville,
Illinois, and hopes that she can help other families on the
same journey.
The trends I have seen should come
as no surprise because autism spectrum
disorders have reached epidemic numbers,
and autistic children tend to have health
problems. I am seeing an increase in
the number of these children needing
radiological procedures such as an MRI or
a CT scan as well as increasing numbers of
autistic children for various ENT and dental
procedures.
I am not the only one who has observed
these trends. Recently, my profession has
begun to address the special considerations
of autistic children and children with
behavioral problems. They are called
“difficult pediatric patients.”1 This is a new
term in my profession; we didn’t need such
a phrase 25 years ago when I started my
career.
A recent educational review article2
discussed anesthetic considerations for
cerebral palsy patients, based primarily
on their physical problems (e.g., risk for
aspiration, difficulties positioning the
patient, and interactions with anti-spastic
and anti-epileptic medications). Autistic
children, on the other hand, were primarily
looked at from a behavioral standpoint
(e.g., minimizing waiting time, providing
quiet areas for pre- and post-operative
care, and involving parents).
The typical anesthesia provider is
aware of the behavioral problems in our
children and will do anything to make
the anesthetic experience as smooth as
possible. Most anesthesia providers will
have a preoperative telephone interview
to discuss our children’s needs. They will
minimize waiting times, provide quiet areas,
and be very open to parental involvement.
But that provider may not realize that
he or she needs to look at the metabolic
problems in autistic children and consider
how those problems may affect anesthetic
choice.
Anesthesia providers generally are aware
of the prevalence of diagnosed ADHD and
the various drugs those children may be
on. They understand that autistic children
may also be on stimulant or antipsychotic
drugs; therefore, they must regard specific,
necessary anesthetic considerations. For
example, when some of these drugs are
combined with certain anesthetic drugs,
an increase in central nervous system
depression may result. Thus, the anesthesia
provider knows to avoid or minimize use of
the problematic agent. But the anesthesia
provider who sees that as the only concern
is missing something very important.
ISSUE 33 2009
Many parents tell me their child was
different or regressed after an anesthetic.
To those of us who have taken a hard look
at the biochemical problems underlying
our children’s autistic manifestations,
those anecdotal reports should come as
no surprise. An anesthetic may represent
yet another toxic insult our children get
exposed to. Therefore, we must help
anesthesia providers understand the
physical and biomedical problems our
children have so that the providers may
minimize the insults. Not surprisingly, part
of the problem is the same mindset we see
in the mainstream medical community at
large.
Mainstream physicians generally react
to the physical problems of ASD children
in the way their training taught them.
Clinicians use pharmaceutical drugs to
manage behaviors, without looking at
what might be causing those behaviors.
Because most anesthesia providers are
very much part of the mainstream, they
see only “autistic” behaviors, and they
try to compensate for those behaviors by
sedating the child. Such a provider does
not understand the metabolic problems
underlying those behaviors. So, they will
default to protocols that may include drugs
that might cause problems.
It’s hard to blame the anesthesia
community for its blindness, considering
the lack of any professional guidance and
resources. The Autism Research Institute
(ARI) has two articles devoted to concerns
with anesthesia on its Web site. The first 3
provides both a good general overview of
anesthesia for parents and some general
advice to anesthesia providers. Although
the advice is accurate to a point, it fails to
warn of specific problems autistic children
may encounter with anesthetic drugs.
The second ARI article addresses
anesthesia for dental procedures 4 . The
author states, “There are no data that
any anesthetic drugs cause or worsen
autism, nor are there any published data on
preferred drugs for anesthetizing autistic
children.” Although it was true (at least
when the article was written) that there
were no studies directly examining the
impact of anesthesia on children with ASD,
there is published data that cautions about
using particular agents with patients who
have certain metabolic problems. Many
of those metabolic problems are the same
physical problems that, depending on one’s
point of view, are underlying many autistic
manifestations (or at least would be labeled
comorbidities).
Recently published research supports the
potential for problems5. A retrospective
study based on medical and school records
from over 5,000 children born between
1976 and 1982 in Olmstead County,
Minnesota, found that one exposure to
anesthesia was not harmful. More than
one exposure, however, doubled the risk
that a child would be identified as having
a learning disability before the age of 19.
That risk increased with a longer duration
of the anesthetic. The exposures were
between birth and four years of age: a very
critical time of brain development.
The anesthetics primarily used in
An anesthetic may represent yet another toxic insult
our children get exposed to. Therefore, we must help
anesthesia providers understand the physical and
biomedical problems our children have so that the
providers may minimize the insults.
ISSUE 33 2009 the procedures under review in the
Olmsted County study were halothane
and nitrous oxide. Halothane is a very
fat-soluble drug that is difficult for the
liver to metabolize. Nitrous oxide can
deactivate methionine synthase, which
is a B12 dependent enzyme important in
the methylation cycle. What we can learn
from that study is that administering a
fat-soluble toxin, followed by inhibition of
DNA methylation, may result in “learning
disabilities.” Although use of halothane
and nitrous oxide is not as common as it
used to be, it is not a terribly great leap to
hypothesize that use of similar chemicals
and toxins may play a role in triggering or
exacerbating manifestations of ASD.
All that being said, anesthesia is
unavoidable for children who need to
undergo surgical procedures. The goal
in such cases is to minimize the risk. To
do that, the anesthesia provider must be
made aware of the unique problems your
child has.
In general, these are the things your
anesthesiologist does not know:
Your child has a medical disease —
not some mysterious mental disease
that is solely genetic in origin.
Your child may have gastrointestinal
dysfunction, immune system
dysregulation, inflammation,
mitochondrial dysfunction, heavy
metal poisoning, oxidative stress,
and chronic inflammation.
Most importantly, your child
probably has impaired detoxification
systems and may not be able to
metabolize drugs efficiently.
In basic terms, anesthesia consists of
three distinct elements controlled by
pharmaceutical agents:
Amnesia (i.e., the patient is asleep
and remembers nothing);
Analgesia (i.e., the patient feels no
pain); and
Muscle relaxation (i.e., the patient
doesn’t move).
15
BIOMEDICAL
There is no single agent to handle all
three elements, so a combination of drugs
must be used. The anesthesia provider
titrates the drugs to effect a proper
balance, taking into account the unique
condition of the patient. (Indeed, because
anesthesiologists and nurse anesthetists
are used to taking unique biochemical
factors into account for each patient, you
may find it easier to discuss your child’s
condition with them than you have with
other mainstream physicians.)
Anesthesia is generally administered
through two methods: intravenous
and mask induction of gas. For adult
patients, an IV is started, and usually
a sedative and/or narcotic is given as a
premedication. Then an induction agent is
given to put the patient to sleep. Propofol
is often used as the induction agent. Then
the airway is secured and an anesthetic gas
is used to keep the patient asleep. Often a
narcotic is added for pain relief.
Sometimes using an intravenous
catheter is possible for children, but more
often that access is not easily obtained and
an inhalation induction is used instead. A
high flow rate is used for the gas, which
is delivered through a mask on the child.
After a few breaths, the child is asleep, IV
access is able to be obtained, the airway
is secured, and gas is used to maintain the
anesthetic.
When you meet with your
anesthesiologist or nurse anesthetist,
be prepared to discuss the methods of
anesthesia delivery and the exact drugs he
or she intends to use. Do not be afraid to
ask questions about the nature of specific
drugs and how they work in the body.
Many of the drugs used in anesthesia
should be considered relatively safe. For
example, Versed® (a benzodiazepine used
for sedation, amnesia, and anti-anxiety)
and fentanyl (a potent narcotic) are
relatively short-acting and are not heavily
metabolized.
Other drugs may present opportunities
to make choices. Propofol, a short-acting
agent, is administered intravenously
and is used for induction and also for
maintenance of a general anesthetic (i.e.,
keeping the patient asleep). It may be
problematic for patients with an allergy
to soy or eggs; it contains soybean oil
and egg phospholipid. Concerns have
16
THE AUTISM FILE | www.autismfile.com Special attention must be
paid to the use of nitrous
oxide.
also been raised regarding a potential
for propofol to exacerbate mitochondrial
disease. Unfortunately, however, all
general anesthetics have a tendency to
inhibit mitochondrial function. Moreover,
the documented difficulties noted with
propofol stem from long-term use in the
ICU setting, exceeding the exposure most
patients would encounter6 .
Under most circumstances, propofol
can be safely used. But if there is a
concern about its use, your provider may
determine that inhalation induction may
be appropriate using sevoflurane. Only
two-to-five percent of sevoflurane is
metabolized in the body, making it an
excellent choice for many patients. (An
older inhalant, halothane, is rarely used
now because of its tendency to be heavily
metabolized.)
Sometimes the provider may want
to use ketamine. It is a dissociative
anesthetic; in essence, it is a
hallucinogenic. It is usually used for
sedation, especially for short procedures
like changing dressings on burns. In
children – especially so-called difficult
pediatric patients – it may be used to
make it easier to start an IV. Ketamine’s
advantage is that it doesn’t depress
respirations like other anesthetics might.
It’s also easy to use; it can be given orally,
intramuscularly, or intravenously. Typical
side effects, however, include open eyes,
nystagmus, increased salivation, and
emergence delirium. Ketamine alters the
patient’s sensory perception, which raises
questions about its use for our children
due to the sensory issues many autistic
children have.
Special attention must be paid to the
use of nitrous oxide. It is one of the oldest
anesthetics used today and is still used for
sedation in dental procedures. In addition,
it is used on occasion as a carrier gas with
sevoflurane in mask inductions. That is,
nitrous oxide is utilized for a second-gas
effect to increase the concentration of
another inhaled anesthetic agent, thereby
allowing the patient to get to sleep faster.
In the last decade, various concerns
have been raised about the use of nitrous
oxide: inactivation of methionine synthase,
increase of post-operative nausea,
relatively poor amnesic properties, and
even contribution to greenhouse gasses.
Because of these concerns, nitrous oxide
use in the operating room has dramatically
declined in recent years and will likely
approach zero in the coming years.
That being said, nitrous oxide is still
being used (especially in the dental
setting) and may present specific
problems for autistic children with
common underlying conditions. Nitrous
oxide depletes the B12/folate system. It
deactivates methionine synthase, which is
an enzyme that catalyzes the conversion of
homocysteine and methyltetrahydrofolate
to methionine and tetrahydrofolate. Such
a deactivation in a patient with a defect
in the MTHFR (methylenetetrahydrofolate
reductase) gene, which is associated with
diminished enzyme activity, could result in
increased homocysteine levels, increased
oxidative stress, and activated NMDA
glutamate receptors. All of these could
contribute to inflammation; additionally,
nitrous oxide also may cause hematologic
problems, neuropathy, and neurotoxic
effects7.
For years, the anesthetic community
was told that nitrous oxide was the
perfect anesthetic. Now we know better.
A study published in 2003 discussed
the effects of two subsequent nitrous
oxide exposures, MTHFR mutation, and
the fatal neurological outcome due to a
methionine deficiency.8 In 2007, Dr. Victor
Baum presented a paper at a pediatric
anesthesiology meeting that made us
all rethink using nitrous oxide as an
anesthetic.9
ISSUE 33 2009
Methylation is important for
detoxification, myelin sheath formation,
neurotransmitters and DNA synthesis.
How can we help the anesthetic provider
understand that this is one of the
underlying problems that we see in autism?
How can we help our anesthetic provider
understand that some of our children
have genetic mutations such as CBS
(cystathionine beta synthase) and MTHFR,
which will affect how they detoxify drugs?
How can we help the providers understand
that our children have increased oxidative
stress and decreased methylation? How
can we help them understand that most
of our children have gut problems that
interfere with the absorption of many
vitamin co-factors needed for methlylation
and detoxification? How do we help them
realize that many developmentally delayed
children have some type of mitochondrial
dysfunction that may affect the provider’s
choice of an anesthetic? How can we help
them understand that many anesthetic
drugs affect autonomic nervous system
function and can have untoward effects
in the autistic population? How can we
help them realize that their choices in the
operating room may have detrimental
effects on our child when they return
home?
Unfortunately, most anesthesia
providers have not seen any of the
published research discussing biomedical
problems in the autistic population. As
with other medical disciplines, parents
of autistic children have difficulty with
the mainstream mindset when we try
to explain our children’s problems to
anesthesia providers. We can help educate
our anesthetic providers about our
children’s metabolic problems by referring
them to studies, many of which are listed
on the Autism Research Institute’s
Web site10.
The best starting point is Dr. Martha
Herbert’s well-reasoned 2005 article titled
“Autism: A brain disorder or a disorder that
affects the brain?” that clearly lays out
the need to embrace a new paradigm in
understanding autism11.
In addition, the 2004 article by Dr. S.
Jill James and her colleagues, “Metabolic
biomarkers of increased oxidative stress
and impaired methylation capacity in
children with autism,” clearly explains the
methylation problems in autistic individuals
that can lead to increased oxidative
stress12 . These pathways were considered
in other neurological diseases but never
linked to autism before Dr. James’ work.
This article also discusses the use of
B12, folinic acid, and betaine to increase
methylation and reverse the effects of
oxidative stress. This is critical information
for anesthesia providers.
A recent article from 2008 by Dr.
Richard Deth, et al. addresses the
environmental and genetic factors that
can lead to autism13. The article describes
a “redox/methylation hypothesis of
autism,” in which oxidative stress, initiated
by environmental factors in genetically
vulnerable individuals, leads to impaired
methylation and neurological deficits
secondary to reductions in the capacity for
synchronizing neural networks. This article
underscores the need to minimize oxidative
stress that can result from anesthesia. The
anesthetics that are commonly used may
contribute to the toxic load, deplete B12,
and affect methylation.
Dr. Jon Poling’s paper published in
2006 on developmental regression and
mitochondrial dysfunction in autism
also helps to explain the overall impact
anesthetic choice may have14 . The
mitochondria represent the energy
portion of our cells, and mitochondria are
necessary for the Kreb’s cycle, fatty acid
oxidation, metabolism of amino acids, and
oxidative phosphorylation. The increased
risk of certain anesthetics for patients
with mitochondrial problems has been
The most important thing to discuss with the providers
is detoxification pathways. Let them know that your
child may have a problem with glutathione production
and have defects in the methlylation pathways. A child’s
liver is not able to detox as much as an adult. The need
is to “keep it simple.”
ISSUE 33 2009 widely reported in anesthesia journals, and
Dr. Poling’s conclusions should be easily
understood.
Armed with better information, the
anesthesia provider should be able to
understand the metabolic problems our
children have; in many respects, they are
the same problems we see in the increasing
population of chronically ill adults.
What can you do as parents and
professionals to help your anesthesia
provider recognize your child’s unique
problems? When your child is scheduled to
undergo a procedure, consider discussing
the following issues during the preoperative conference:
Ask not to use nitrous oxide. Most
of our kids have a documented B12
deficiency.
Discuss specific medical and
metabolic problems concerning
your child. Tell your provider of any
genetic, methylation, detoxification,
and mitochondrial issues.
Consider placement of an IV without
sedation. Many of our children
undergo multiple blood draws and
intravenous treatments. If your
child can tolerate an IV placement,
let your anesthesiologist know that
because the provider usually will
not expect children to tolerate this
procedure.
Inform the anesthesia provider of all
medications, supplements, and IgE
allergies.
Make sure the provider understands
that your child has difficulty
detoxifying drugs.
Ask the provider to keep the
anesthetic as simple as possible.
Discuss any other drugs that might
be given in conjunction with the
anesthetics (e.g., acetaminophen,
steroids, and antiemetics).
The most important thing to discuss with
the providers is detoxification pathways.
Let them know that your child may have a
17
BIOMEDICAL
problem with glutathione production and
have defects in the methlylation pathways.
A child’s liver is not able to detox as much
as an adult. The need is to “keep it simple.”
Instead of giving three different drugs at
the same time for nausea, why not simply
replace fluids to prevent dehydration, which
is the major cause of post-operative nausea.
A mother once asked advice about an
upcoming procedure because of problems
with a prior dental anesthetic. The child
was given Versed®, ketamine, Decadron®,
nitrous oxide and sevoflurane. The mother
complained her son was “out of it” for two
days after the procedure. We discussed the
questions she should ask her anesthesia
provider for the next procedure; as a result,
the anesthetic was conducted with just
Versed® and sevoflurane. The mother used
homeopathics at home for the pain and
swelling. Her child suffered no ill effects
from the anesthetic.
Anesthesia can be done successfully in a
very simple way. When a neurotypical child
goes to the dentist, does he or she get all
of the drugs that many providers seem to
feel are necessary for our ASD children?
That is the problem with the way children
on the spectrum are treated. Too many
anesthesia providers are more concerned
with behavioral issues than they are with
the underlying physical condition. Instead
of heavily sedating autistic children, the
providers should consider using fewer
drugs, adjusting the dosages to achieve the
desired effect. ASD children, in essence,
should be approached in the same manner
that an anesthesia provider approaches
hepatic- and renal-impaired patients.
In addition to this higher degree of
respect for their medical condition, our
children should be treated with respect for
18
THE AUTISM FILE | www.autismfile.com their emotional state – just like anyone else,
and it should be explained to them what is
going to happen. The receptive language
and intelligence of most autistic children is
much higher than the general public thinks.
Unfortunately, surgery is often necessary,
and that involves an anesthetic to prevent
the sympathetic system activation that
a pain response elicits. It can be done
safely by an informed anesthesia provider.
As with any toxic exposure, we can limit
the harm and increase detoxification
pathways to encourage elimination. During
administration of an anesthetic, the patient
is given drugs that must be metabolized by
the liver, using various enzymes systems to
convert fat-soluble toxins into water soluble
substances that can be excreted in the urine
or the bile. At home, you can help that
process, using the same liver detoxification
protocols you may already be using.
Activated charcoal
DMG, TMG, methyl B12, methylfolate
Epsom salt baths
Silymarin (milk thistle)
Bentonite clay
Antioxidants – vitamins A, C, E
Magnesium
Glutathione
Most anesthesiologists and nurse
anesthetists want to make the anesthetic
experience go as smoothly as possible.
After all, it is their job to make the patient
feel good.
As an anesthetic provider, I consider
it part of my mission to help educate my
colleagues and to help them understand
that our children are sick – not just autistic.
That is also my mission as a parent, and it is
likewise the mission of all parents.
SELECTED COMMON
ANESTHESIA DRUG NAMES
GENERIC
BRAND
fentanyl
halothane
ketamine
midazolam
sevoflurane
Sublimaze®
Fluothane®
Ketalar®
Versed®
Ultane®
References
Schure, AY. Difficult pediatric patients:
Anesthetic considerations for children with
behavioral problems.” Current Reviews for
Nurse Anesthetists, Vol. 31 (21) (Feb. 2009).
1
2
Ibid.
Kirz, L. Surgical anesthesia and autism.
http://www.autism.com/families/life/kirz.
htm.
3
4
Novak, RJ. Dental anesthesia for the
autistic child. http://www.autism.com/
families/life/dental.htm.
5
Wilder, RT, Flick, RP, Sprung, J, et al.
Early exposure to anesthesia and learning
disabilities in a population-based cohort.
Anesthesiology, April 2005; 110(4): 796-804.
6
Morgan, P. When Propofol is problematic.
Presentation at 12th annual joint winter
meeting of the Society of Pediatric
Anesthesia and American Academy of
Pediatrics. http://www.pedsanesthesia.
org/meetings/2007winter/pdfs/MorganFriday1130-1150am.pdf.
7
See Selzer, RR, Rosenblatt, DS, Laxova, R,
Hogan, K. Adverse effect of nitrous oxide in
a child with 5,10-methylenetetrahydrofolate
reductase deficiency. New England Journal
of Medicine, July 2003; 349: 45–50.
Kalikiri, PC, Sachan Gajraj Singh Sachan, R.
Nitrous oxide induced elevation of plasma
homocysteine and methylmalonic acid levels
and their clinical implications. The Internet
Journal of Anesthesiology, 2004; Vol. 8
(2). Baum, VC. When nitrous oxide is no
laughing matter: Nitrous oxide and pediatric
anesthesia. Paediatric Anaesthesia, Sept.
2007; 17(9):824-30.
8
Selzer, et al, supra.
9
Baum, VC, supra.
10
http://www.autism.com/
Herbert MR. Autism: A brain disorder or
a disorder that affects the brain? Clinical
Neuropsychiatry, 2005; 2(6):354-79.
11
12
James SJ, et al. Metabolic biomarkers
of increased oxidative stress and impaired
methylation capacity in children with autism.
Am J Clin Nutr, Dec. 2004; 80(6):1611-7.
Deth, R, Muratore, C, Benzecry J, PowerCharnitsky, VA, Waly, M. How environmental
and genetic factors combine to cause
autism: A redox/methylation hypothesis.
Neurotoxicology, Jan. 2008;29(1):190-201.
13
Poling, JS, Frye, RE, Shoffner, J,
Zimmerman, AW. Developmental regression
and mitochondrial dysfunction in a child
with autism. J Child Neurol, Feb. 2006;
21(2):170-2.
14
ISSUE 33 2009
PARENT’S PERSPECTIVE
First, Do No Harm:
Anesthesiological
Accidents & Autism
By S. Victoria Walter
S. Victoria Walter is a freelance writer and graphic designer. She lives in Petaluma, California,
with her husband and two daughters.
W
ell, it happened again. My
blind faith in doctors has left
my daughter, Vivi, clinging to
a pale imitation of the life she once led,
groping her way around, helter-skelter,
in the bio-neurological shadowlands.
My trust was shattered the first time
on the day our pediatrician jabbed five
vaccines into my young daughter. She
was 13 months old, newly adopted,
severely malnourished, and recovering
from tonsillitis. There was not even
enough blood in her weak 14 pound
body to complete tests for contagious
diseases. Her doctor chose to ignore
the immunization records from China,
her country of birth, and thought a
vaccine catch-up schedule was a super
idea. It was not. She ended up in the
emergency room with a high fever
and viral rash a day later. She now had
double the number of vaccines a typical
American child would receive at her age.
Thus began my conversion to medical
agnosticism.
Vivi did, however, begin to develop
speech, and we did continue to follow
the recommended vaccine schedule.
Vivi’s speech regressed. She was
diagnosed with autism at 3 years old.
The next time I warily placed Vivi’s
health into the hands of doctors was
during routine dental restoration surgery.
As an orally-defensive, nonverbal child
with autism, she required sedation in a
hospital setting for the procedure. At the
time she was 6 years old and weighed
31 pounds. During the one-and-a-half
hour surgery, the following medications
were administered: propofol,
sevoflurane, ketamine,
and nitrous oxide for
anesthesia purposes,
as well as oxygen,
morphine,
Zofran,
bupivacaineepinephrine
and
Lactated
Ringers. Her
teeth were
repaired
and the
surgery was
uneventful.
But we did not
take the same child
home.
Our happy, delightfully
overzealous child had become
rigid and almost catatonic; she did not
eat, drink, or move for the first 72 hours
after surgery. Her little body lay still and
silent on the sofa, day after day. When
we tried to rouse her she became almost
Her teeth were repaired and the surgery was
uneventful. But we did not take the same child home.
ISSUE 33 2009 feral, scratching at our face and neck,
pinching our arms, grabbing and pulling
out hair, and head banging. She would
hit or kick any part of her body she
could reach with fist or foot; every day
brought a new set of ghastly contusions.
The bruises covered her face, ears,
shins, lower back, hips
and pelvic bone. Her
punch was solid
and strong, and
it sometimes
drew blood.
Except for a
few weeks
prior to the
surgery
when she
lightly
tapped
her jaw
(when it was
discovered
she had been
suffering three
dental caries) our
daughter had never
exhibited self-injurious
behavior (SIB). Now we go to sleep and
wake up to the sound of bone hitting
bone.
Two weeks after the dental surgery,
Vivi was still in a state of suspended
animation, as though stranded in a
spiritual purgatory void of emotion,
action, or purpose. She rarely ate or
drank and her body functions seemed
to slow down, like a bear cub in
19
1: Vivi uninjured.
2-7: Vivi’s injuries.
We live with the possibility that
she may blind herself, break
a bone, or cause cumulative
damage to her brain from
the SIB.
20
THE AUTISM FILE | www.autismfile.com hibernation. It was almost a month
before she would get up on her own and
move about, and it was another month
before she would go outside and interact
with the world.
Vivi is now 7 years old. She cannot
eat by herself because the urge to
hit herself is compulsive, and so she
is swaddled in restraint blankets and
hand-fed. She wears gloves most of the
time and is constantly whining, crying,
or distressed. She has not gained any
weight this past year, nor met any of
her Individualized Education Program
goals due to profound regression. Her
ability to focus and learn is gone, as are
her toileting skills and independence.
We live with the possibility that she may
blind herself, break a bone, or cause
cumulative damage to her brain from
the SIB.
She spends the day following me
about, clinging to my skirt, seemingly
afraid and insecure. When she gets
whipped up into an anxious frenzy, it’s
my cue to apply pressure and constrain
her in the velvety softness of Snowflake,
a king size blanket, providing her only
comfort and companion. We repeat this
routine around the clock.
We tried a clonidine patch to reduce
her chronic anxiety, but it did not
work and so we discontinued it. Other
prescription medications prescribed over
the course of a year include Risperdal,
Luvox, and Abilify. Currently, Vivi is
not on any meds as none have proven
helpful. We do use low-dose naltrexone,
which has been shown to reduce SIB in
some studies. Though not effective in
improving her SIB, it has helped with eye
contact and mood.
Our lives, already overwhelmed
with the heartbreaking despair of
her disorder, have become a living
nightmare. Family outings are precluded
as she is uncontrollable in public and
still hits herself hundreds of times an
hour (as counted by her teacher), even
after a year of my efforts to restore
her to a state of health. My daughter’s
occupational therapist, speech therapist,
four special ed teachers, school
principal, and three psychologists said
ISSUE 33 2009
According to a report published in the New England Journal of Medicine, individuals who
are born with certain mutations in the gene responsible for the breakdown of folate may
be at risk for neurologic damage – and even death – if they are given nitrous oxide.
they have never seen such an extreme
case of SIB. I, of course, know it is not a
typical case of self-injury. Normally, my
daughter’s hyperactive sensory system
compels her to actively seek activities
that involve motion. Now, activity seems
to be a huge problem. She doesn’t want
to engage in her favorite activities such
as walking to the park, taking a bath,
swinging ... nothing can distract her
from whatever is going on in her mind.
MRI and EEG procedures were done
to check for seizures; according to her
doctor, they did not “confirm or deny
anything.” Genetic testing revealed that
she is a compound heterozygote for
two MTHFR (methylenetetrahydrofolate
reductase) gene mutations. A pediatric
neurologist stated that this is “not
a significant basis for a disturbance
of folate metabolism and, therefore,
is not at risk for problems with the
anesthesia.” I now know this assessment
to be grossly erroneous. I feel that our
HMO was negligent in not educating
its anesthesiologists about the dangers
of anesthesia for its patients with
autism, specifically those with MTHFR
mutations. Nitrous oxide, when
given to people with MTHFR, blocks
the production of methionine. And
methionine plays an important role in
DNA synthesis of neurotransmitters
and myelin, the insulating material
covering nerves. According to a report
published in the New England Journal
of Medicine, individuals who are born
with certain mutations in the gene
responsible for the breakdown of folate
may be at risk for neurologic damage
– and even death – if they are given
nitrous oxide.1
We had her folate tested a month after
the adverse drug reaction and it was
above normal range. Her B12 value was
greater than 1000 pg/mL with a normal
range of >200. Our Defeat Autism Now!
(DAN!) doctor interprets this as a lack of
bioavailability of these vitamins due to a
damaged methylation pathway.
Our current DAN! doctor understands
the clinical consequences of nitrous
oxide mediated, folate-cobalamin
cycle inactivation and the impact on
methionine synthase. Together we
have created a treatment plan that
focuses on restoring Vivi’s methylation
pathways and correcting the metabolic
abnormalities through supplementation
of folinic acid, betaine, methyl-B12,
zinc, and glutathione. In contrast, our
HMO offered us nothing but a shot
of Benadryl in the emergency room to
reduce her agitation.
The lack of understanding of the
etiology of autism by conventional
doctors shows an unconscionable
bias against our children with
neurodevelopmental issues. Most of
my daughter’s problems are summed
up by the mainstream pediatrician as
“just typical of autism.” Even if that
were correct – which it’s not – does
that make her suffering any less real or
heartbreaking?
The irony of being harmed by the
medical community is tragic. And it
didn’t have to happen. A mother’s love
has often not been enough to protect a
child from unenlightened doctors. But
parents’ knowledge plus love will protect
our children. And it is my dearest hope
that, along with my daughter’s recovery,
the autism community of parents and
health professionals will find a way
to mainstream ethical and humane
treatment for all of its children.
Most of my daughter’s
problems are summed up by
the mainstream pediatrician
as “just typical of autism.”
Even if that were correct –
which it’s not – does that
make her suffering any less
real or heartbreaking?
References
1
Erbe, RW & RJ Salis. Severe
Methylenetetrahydrofolate Reductase
Deficiency, Methionine Synthase, and Nitrous
Oxide — A Cautionary Tale. N Engl J Med
2003;349:5-6,
21
Let My Hindsight Be
Your 20/20 Vision:
Autism, Anesthesia,
& Fluoride
By Annette Van Dyke, RPh, MPH
Annette Van Dyke, RPh, MPH, is a registered pharmacist and mother to 7-year-old Kylie and 6-year-old Ryan. She is cocoordinator of the Milwaukee and Madison chapters of Talk About Curing Autism (TACA). Annette’s husband, Kyle, is a Defeat Autism
Now! doctor seeing patients at Wisconsin Integrative Hyperbaric Center.
Please visit: www.wisconsinhyperbarics.com and http://meetup.tacanow.org/wisconsin/index.html
O
n this journey I have learned so
much, yet I continue to feel I need
to know more to help my son. To
help the autism community, I want to talk
about our good and bad experiences in the
hope of saving some other family a few
months or years in their journey to recovery.
Today’s memories are of fluoride and
what I would undo, if I could, in Ryan’s life.
Let’s fast forward past the diagnosis, the
denial, and the diet, and go to that day in
May 2006 in the dentist’s office when Ryan
was 3 and a half years old. I was standing
there idly watching the hygienist dab the
THIRD blob of “stuff” on the toothbrush.
She let out an exaggerated sound from
her mouth, and I asked, “What?” She
said, “He keeps swallowing the fluoride
before I can brush.” I looked at her and
said a little too loudly, “FLUORIDE, what
do you mean FLUORIDE?!” The rest of
the dialogue is lost to the blur of activity
because I was very upset and pointed at his
chart that had a bright orange sticker that
said “NO FLUORIDE!!” I spouted details of
metabolic pathway problems as they relate
to Ryan. Despite everyone’s assurances that
everything would be OK, I had a terrible
feeling that doom was looming.
Ryan had very elevated porphyrin1
levels, so we strictly avoided anything that
would be difficult to excrete. Even our
water was filtered through a whole-house
water filtration system to avoid chlorine
exposure. I drove the 60 miles home crying
and cursing myself most of the way ...
wondering what would happen, what to do
... Well, by the time I got home, horrendous
diarrhea accompanied by a very red rash had
presented. Slowly over the next week or so,
we lost ground: eye contact disappeared,
Ryan was very “floppy” and out of it – our
son was gone again. Basically, we had to
start over ...
So now fast forward to December 2007
to the pre-surgery consultation with the
anesthesiologist prior to Ryan’s out-patient
surgery for removal of tonsils and adenoids.
I was very upset and pointed at his chart that had a bright orange
sticker that said “NO FLUORIDE!!” I spouted details of metabolic
pathway problems as they relate to Ryan.
22
THE AUTISM FILE | www.autismfile.com Ryan was 5 years old. We were hopeful this
surgery would reduce strep colonization/
biofilm2 and the resulting PANDAS3 we had
been battling. Ryan had regained most of
his skills (as measured by his ABA home
program) since the fluoride exposure at the
dental office. However, Ryan had severe
obsessive-compulsive behaviors that were
making it difficult to mainstream him in
school. Picture the teacher having to “hide”
the sink in the classroom because his water
obsession was extreme and having all the
light switches duct-taped to remain in the
“on” position.
Back to the pre-surgery consultation:
There we were very intelligently explaining
methylation defects and our concern with
anesthesia gases. We were able to convince
the doctor that we could skip the first two
steps of sedation and go straight to the
intravenous line placement. (Ryan doesn’t
mind IVs as long as he can pick which
hand is used because he’d had weekly
IVs for months.) In 2004 we had used an
anesthesiological agent for an MRI that
resulted in a rash that lasted three days, so
we wanted to avoid that agent. Therefore,
we discussed other drugs we could use,
and we settled on sevoflurane. Now, did a
red flag go up for either of Ryan’s highly
intelligent and knowledgeable parents (and
we’re a doctor and a pharmacist)? NO! But it
should have ... “flurane ...” It had been over
a year and a half since the fluoride incident,
ISSUE 33 2009
so it just wasn’t on my mind at that moment.
Post-surgery, Ryan slept and slept with the
nurse saying, “He will wake up any minute
now ...” By the time the surgery suite was
ready to close for the day, Ryan had not
even gotten to sample his “legal” popsicles.
He was still very groggy, but since Ryan’s
vital signs were good, admitting him was not
an option. We were allowed to carry him out
of the facility and strap him into his car seat
for the hour’s drive home. Since I wanted
to get started on detoxing him from the
procedure, we drove to our office to use a
soft-sided hyperbaric chamber.
For Ryan, we were big believers in
hyperbarics. We had participated in a pilot
study using mild hyperbarics (1.3 atm) for
40 sessions. Ryan’s laboratory biomarkers
directly correlated with what we were
able to see clinically – that is, his outward
manifestations. During the study, we saw
improvements in Ryan’s gut, increased
cognitive awareness, and increased ability to
imitate words. So, when we scheduled the
tonsil surgery, I also scheduled hyperbaric
sessions for pre- and post-surgery. I felt
that by using hyperbarics before the surgery
I would have him in the best possible
condition. I scheduled sessions for after the
surgery to speed the healing process. Little
did I know that it would be helpful in other
ways.
In the chamber, Ryan started to wake
up a bit; it was nice to see his eyes open.
After the first hyperbaric session he seemed
better, but he was still not interested in his
popsicles. I decided I should give him his
pain medication, acetaminophen and codeine
liquid. Over the next few days, Ryan got
progressively worse. He never spoke, and
we thought, “Oh, it’s because of the type of
surgery.”
After each session of hyperbarics, Ryan
would look almost “normal” for a postsurgery kid. I would start to think that he
was going to be OK. Over the weekend, we
didn’t do hyperbarics, and that is when we
really started to get worried. At the end of
the weekend we took him to the hospital for
fluids and observation because he couldn’t
hold his head up and refused to drink. Still
he had not spoken – and we were beginning
to get very scared. We ran all the mainstream
labs – they showed nothing to explain how
terrible he looked. You can imagine the panic
I was starting to feel since we couldn’t figure
ISSUE 33 2009 Quickly I realized acetaminophen was not helping the situation.
Acetaminophen lowers glutathione , something Ryan was already
very low in as evidenced by prior laboratory testing.
out what was causing the decline, which we
needed to know in order to fix it.
I got on the Internet and starting searching
for what could be going wrong. Quickly I
realized acetaminophen was not helping
the situation. Acetaminophen lowers
glutathione4, something Ryan was already
very low in as evidenced by prior laboratory
testing. So, we switched the pain medication;
I didn’t see any big improvements, but at
least he didn’t get worse as he had with the
acetaminophen. Hyperbarics was the only
thing helping, but something was getting
in the way of the positive effects sticking.
Ryan’s speech still had not returned.
I decided to search some more. Luckily I
found in the package insert for sevoflurane
that it can metabolize to fluoride. I felt
that this was key! Several frantic e-mails
later, after watching Ryan lie on the ground
throughout his birthday party at the bounce
place at the mall, where he couldn’t even
sit up on his own and was clearly not in
our world, I got a phone call that we had
received an e-mail from the our favorite
autism biochemist. The e-mail suggested
some very specific supplements. Of the list
of supplements suggested I had five of the
eight needed. Since the birthday party was
at the mall, I was able to literally run to the
vitamin store to find the rest.
Remarkably, the very next morning Ryan
could sit up and began to walk a bit. Those
lifesaving supplements remain in his regimen
to this day. We continued hyperbaric oxygen
therapy and many other interventions, and
over the next year he slowly regained his
skills.
It is now a year and a half later, and
Ryan is almost back to where we were prior
to the tonsil anesthesia; speech is back,
socialization is returning, and his handwriting
is starting to re-emerge. On the plus side, his
obsessive-compulsive traits are gone and so
are his self-stimulatory behaviors.
So, last month when we decided to have
Achilles lengthening surgery done on Ryan,
we began to question our own sanity for
agreeing to the surgery. Would this cause
another regression? Could we handle it?
Were we prepared this time?
We relocated from Virginia to Wisconsin
and have new doctors and insurance;
however, we were still able to have Ryan’s
surgery scheduled as an inpatient procedure
due to his previous history. This time, we
asked the doctor to use the anesthesiological
agent called propofol. Propofol had caused
the rash after the MRI years ago, but it had
not caused mental changes.
This time around, we refused all usual
post-op meds (no acetaminophen or
narcotics). To our delight, Ryan was walking
just hours after surgery, which is particularly
unusual for this type of surgery. We didn’t
even need to stay overnight. We only used
non-steroidal anti-inflammatory agents and,
of course, hyperbarics.
Overall, Ryan is doing fabulously well.
Ryan speaks very well and loves to interact
with everyone. Our family is looking forward
to Ryan’s casts coming off, at which point he
will finally be able to walk flat-footed.
Ryan is planning a big party ... and we
have lists and lists of things that must
be at that party. We still have years of
development remaining to catch up on, but
our path appears clear.
My hope is that by talking about our
mistakes some other child will be protected
from harm. Know and heed your child’s
porphyrin profile. Limit exposures! Have a
pre- and post-surgery plan in place with your
child’s Defeat Autism Now! doctor.
References
1
In autism urinary porphyrin levels are used as a
biomarker of environmental toxicity.
2
A biofilm is a complex aggregation of
microorganisms marked by the excretion of a
protective and adhesive matrix.
3
Pediatric Autoimmune Neuropsychiatric
Disorders Associated with Streptococcal
Infection
4
Glutathione is a tripeptide composed of
cysteine, glutamate, and glycine. The cysteine
moiety of glutathione carries the active thiol
group that binds and detoxifies a variety of
heavy metals. Glutathione is one of the essential
antioxidants involved with detoxification in our
bodies.
23
BIOMEDICAL
Hyperbaric Oxygen
Therapy (HBOT)
for Autism:
An Introduction
By Kyle Van Dyke, MD
Kyle Van Dyke, MD, is a board certified family physician who became involved in autism after the diagnosis of his son, Ryan.
He currently works at the Wisconsin Integrative Hyperbaric Center in Madison, Wisconsin.
H
yperbaric oxygen therapy (HBOT)
is the use of inhaled air under
pressure with added oxygen. For
decades, it has been used in mainstream
medicine at high pressures (greater than 2
atmospheres) to treat issues ranging from
the bends to diabetic wound infections,
but only in the last several years has
mild hyperbaric therapy (using 1.3 to
1.5 atmospheres with or without added
oxygen) been used by physicians for
children with autism. I first became aware
of the use of mild hyperbarics for autism
four years ago when Dr. Dan Rossignol,
who was doing a study on autism and
hyperbarics, asked if we would like our
3-year-old son, Ryan, to be in the study.
At first the treatment did not make sense
to me: why would you treat a condition
associated with oxidative stress with
oxygen under pressure? However, Dr.
Rossignol convinced me that it was safe
of oxidative stress with hyperbarics.
and that there were good reasons why it
As a result of the treatment, our son’s
could work in autism.
language, sociability, and overall
He had completed a retrospective
cognition improved greatly. In addition,
study1 (a study that looks at the results of he had the first normal bowel movement
a specific treatment already completed)
in his life (he had suffered with chronic
on a small group of children, and the
diarrhea for years).
study showed benefit. The new study 2
Dr. Rossignol followed up that study
would be a prospective study that would
with a new study that was published
3
measure
of oxidative
stress at hisinchart
Marchthat
2009had
. In a
it, bright
he compared
I was markers
very upset
and pointed
orange
before
and
after
treatment
and
assess
hyperbaric
therapy
at
1.3
atmospheres
sticker that said “NO FLUORIDE!!” I spouted details of metabolic
behavior changes. Our son was part of
pressure against sham therapy at 1.03
pathway problems as they relate toatmospheres.
Ryan.
that study, which showed no worsening
(1.03 atmospheres was
24
THE AUTISM FILE | www.autismfile.com the lowest pressure that could mimic
hyperbaric therapy; since the chambers
are still slightly pressurized it is not a true
placebo but a sham treatment.) Patients,
treating physicians, and psychologists
were blinded as to which children received
which treatment. They did multiple tests
to assess behavioral changes. The study
showed significant improvement in the
treated group when compared to the
sham treatment group.
What is hyperbarics doing, and why
does it seem to help children with
autism? No one is sure of the exact
mechanism, but there are several
different explanations. We know from
SPECT (single photon emission computed
tomography) scan studies that the brains
of children with autism can have areas
of hypoperfusion (low blood flow).
By increasing the air pressure, we are
increasing the amount of oxygen that is
diffused into the serum and increasing
the delivery of oxygen to the brain. We
know from autopsy studies of the brains
of children with autism that chronic
inflammation occurs 4, and we also know
hyperbarics has an anti-inflammatory
effect. In addition, hyperbarics has also
been useful in treating inflammatory
bowel diseases 5, and many children with
autism have terrible gastrointestinal
(GI) inflammation. We know that some
children with autism have dysfunctional
ISSUE 33 2009
mitochondria, the energy generating
parts of the cell. Animal studies have
demonstrated increased mitochondrial
efficiency6 and also increased
mitochondria density 7 with hyperbaric
therapy.
Typical treatment with hyperbaric
oxygen therapy involves sitting in a
chamber that is pressurized. (Both soft
and hard shell chambers are used. Soft
chambers typically use 1.3 atm. Hard
chambers can go to higher pressures
but usually do not exceed 1.5 atm in
autism. Hard chambers can also use
increased oxygen concentrations.) During
pressurization and depressurization,
occupants feel a popping sensation
in their ears similar to ascending in a
plane. Once at pressure, the patient
and caregiver (an adult always goes
in with the child) stay in the chamber
for 60 to 90 minutes and then
depressurize. Typically, treatments
are done once or twice daily Monday
through Friday, usually for a total of
40 sessions. Depending on the clinic
and type of chamber, patients may
be treated at 1.3 to 1.5 atmospheres
pressure and may inhale room air
(21% oxygen) or concentrated oxygen
(from 24% to 100%). There are very
few contraindications to hyperbaric
treatment, and most patients without
significant lung disease can be treated
without problems.
I now work at a clinic that uses HBOT.
I continue to see good results not only
for my son Ryan but also for many
patients who have been treated here.
Children with autism have come in for
treatment; like our son, they frequently
make impressive gains in language, social
interaction, GI function, and overall
cognitive function.
Some of the more dramatic results of
HBOT have been seen in children with
mitochondrial diseases. For example,
Grace was diagnosed with a rare
mitochondrial disease called cytochrome
C reductase deficiency when she was 2
years old. She had been in the hospital
for nearly her whole life suffering from
constant seizures and cortical blindness,
and she was bed bound and had failure
to thrive. Her mother started using mild
hyperbarics when Grace was 3. She
ISSUE 33 2009 Some of the more dramatic results of HBOT have been
seen in children with mitochondrial diseases.
stopped having seizures (and eventually
stopped all anticonvulsants), her vision
normalized, and after several years of
therapy she got out of her wheelchair and
walked for the first time in her life. Grace
is now 10 and has continued to progress.
Mayci has a mitochondrial disease
(complex I and II deficiency) that gave
her constant seizures uncontrolled by
multiple medications. She was wheelchair
bound and nonverbal. After her second
day of mild hyperbarics, her seizures
stopped and have not recurred. After a
year of therapy, she is now learning to
crawl and starting to say a few words to
the delight of her mother.
A 7-year-old girl with autism,
eosinophilic esophagitis (an immune/
inflammatory condition of the upper GI
tract causing frequent vomiting), and
suspected mitochondrial disease was
getting progressively worse. She could
tolerate very few foods, was constantly
vomiting, and was not gaining weight.
Her mother said she was “watching her
dying in front of my eyes.” After her
third mild hyperbaric treatment, the
child said she was hungry and started
eating without vomiting. In the several
months since, she has gained weight and
her overall cognition has improved to
the point where she is arguing with her
brother in a totally typical fashion.
Most children have slow steady gains
over the usual 40 treatments, but
recently a minimally verbal 4-year-old
boy came in for his first treatment on a
Friday afternoon. When he came out,
he shocked his mother by asking her
a question for the first time. After the
single treatment at 1.5 atmospheres,
he continued talking all weekend and
amazed his teachers with his improvement
the following Monday. He continues to
make gains in his first treatment round.
Sometimes hyperbarics is used to help
prevent regressions. A young boy had
been doing well on biomedical treatments
including a previous round of hyperbarics.
When he got a DTaP booster shot, his
mother immediately noticed he was losing
his skills and having staring spells. While
waiting for a neurologist appointment,
she restarted mild hyperbarics; he was
back to himself after the initial treatment
and the staring spells stopped. We have
also used hyperbarics on our son after
surgical procedures to speed healing and
help prevent regressions we had seen
after anesthesia in the past.
Hyperbaric therapy is not a cure for
autism, but it is a new and powerful tool
we can use in the biomedical treatment of
autism.
References
1
Rossignol DA, Rossignol LW:
Hyperbaric oxygen therapy may improve
symptoms in autistic children. Med
Hypotheses 2006,67(2):216-22.
Rossignol DA, Rossignol LW, James
SJ, Melnyk S, Mumper E: The effects of
hyperbaric oxygen therapy on oxidative
stress, inflammation, and symptoms in
children with autism: an open-label pilot
study. BMC Pediatr 2007, 7(1):3.
2
Rossignol D. Hyperbaric treatment
for children with autism: a multicenter,
randomized, double-blind, controlled
trial. BMC Pediatrics 2009, 9:21.
3
4
Vargas DL, Nascimbene C, Krishnan C,
Zimmerman AW, Pardo CA: Neuroglial
activation and neuroinflammation in
the brain of patients with autism. Ann
Neurol 2005, 57(1):67-81.
Buchman AL, Fife C, Torres C, Smith L,
Aristizibal J. Hyperbaric oxygen therapy
for severe ulcerative colitis. J Clin
Gastroenterol 2001;33(4):337–9.
5
6
Kurt B. Effects of hyperbaric oxygen
on energy production and xanthine
oxidase levels in striated muscle tissue
of healthy rats. Journal of clinical
Neuroscience 2008:15.
Gutsaeva D.R. Oxygen-induced
mitochondrial biogenesis in the rat
hippocampus Neuroscience 2006:137.
7
25
EDUCATION & THERAPIES
A Special Kind of
Sensory Integration
Therapy: Proprioceptive
or Suit Therapy
By Jeff Bradstreet MD, MD(H), FAAFP
Jeff Bradstreet, MD, MD(H),
FAAFP, graduated from the University
of South Florida College of Medicine
and received his residency training from
Wilford Hall USAF Medical Center. As
a flight surgeon, he was involved in
aerospace medicine research, and he
has extensive experience and training in
environmental medicine and toxicology.
He is involved in autism-related
outcome studies and environmental
research with the University of
Washington and UCLA and serves as a
adjunct professor of child development
and neuroscience at Southwest College
of Naturopathic Medicine in Tempe,
Arizona. Dr. Bradstreet is the founder
and director of the International
Child Development Resource Center
(www.icdrc.org), which is located in
Melbourne, Florida, and he can also
be found at the California Integrative
Hyperbaric Center in Irvine, California
(www.californiahyperbarics.com).
His son, Matthew, is recovering from
autism with the combined help of
biomedical and behavioral interventions.
26
THE AUTISM FILE | www.autismfile.com O
ne of the supreme challenges
of manned space travel is how
to compensate for the absence
of gravity and the negative impact that
quickly creates on muscle and bone mass.
Russian scientists cleverly developed an
external resistance elastic band suit to
keep pressure on the axial skeleton. The
Penguin Prophylactic Body-Loading Suit,
in use from 1978-present in the Russian
space program, is the inspiration for the
suit therapy used in cerebral palsy and
autism. This form of therapy is also known
as Adeli suit therapy.
For over a decade, first led by the
Russians, suit therapy has been employed
and studied in cerebral palsy (CP), and
some have applied it to autism to provide
increased feedback to the brain. The
general concept is based on proprioceptive
input (these are the sensory nerves
that tell the brain about joint position)
as well as muscle tone. Solugubov and
Iavorskii proposed this form of somatic
and proprioceptive therapy for CP in the
‘90s1 and numerous children have been
The general concept is
based on proprioceptive
input (these are the sensory
nerves that tell the brain
about joint position) as well
as muscle tone.
treated since. In 1997, investigation
from the Science Research Institute
of Pediatrics of the Russian Academy
of Medical Sciences demonstrated a
significant benefit in postural control,
self-care, and walking ability in children
with cerebral palsy2. These improvements
could be demonstrated on objective
neurophysiological testing.
More recently, Bar-Haim demonstrated
comparable results using suit therapy as
compared to intensive physical therapy3.
Suit therapy may be easier and less labor
intensive therapy for many families, and
anecdotal observations made in our clinics
suggest its combination with hyperbaric
oxygen may have even more dramatic
improvement in motor control and relief
of spasticity, although this requires more
research to confirm.
References
1
Sologubov EG, Iavorski_ AB, Kobrin VI, Barer
AS, Bosykh VG. Role of vestibular and visual
analyzers in changes of postural activity of
patients with childhood cerebral palsy in the
process of treatment with space technology.
Aviakosm Ekolog Med. 1995;29(5):30-4.
Russian.
2
Semenova KA. Basis for a method of dynamic
proprioceptive correction in the restorative
treatment of patients with residual-stage
infantile cerebral palsy. Neurosci Behav Physiol.
1997 Nov-Dec;27(6):639-43.
3
Bar-Haim S, Harries N, Belokopytov M,
Frank A, Copeliovitch L, Kaplanski J, Lahat
E. Comparison of efficacy of Adeli suit and
neurodevelopmental treatments in children with
cerebral palsy. Dev Med Child Neurol.
2006 May;48(5):325-30.
ISSUE 33 2009
PARENTS’ PERSPECTIVE
Gianna
in a Place
of Grace
and hope
By Natalie and David Dragotto
Natalie and David Dragotto are mom and dad to Gianna. David is a firefighter. Natalie, whose business degree led her to become a company
controller, left her career to become a stay-at-home mom caring for Gianna. When Natalie is not at the clinic with Gianna, she is spending her day
at Gianna’s school providing continuity for her suit therapy. David and Natalie give Gianna much love and praise, which Gianna soaks up happily. G
ianna is 5 years old and has a
severe seizure disorder. She
has an underlying genetic
metabolic disorder called CDG: congenital
disorders of glycosylation (type 1/subtype
unknown). Formerly, this disorder was
called carbohydrate-deficient glycoprotein
syndrome. We received this diagnosis when
she was 2.5 years old.
But first ...
Gianna’s was a normal delivery. She was
attentive to voices and had no feeding
ISSUE 33 2009 problems the day she was born. Before
being released from the hospital the next
day, a routine hepatitis B shot was given.
She developed jaundice the day after
this shot; she stopped latching on for
breastfeeding and became colicky with
constant crying and screaming. The crying
and screaming lasted for five months. We
were in and out of the doctor’s office due
to gastroesophageal reflux disease (GERD),
the constant crying/colicky behavior,
and feeding issues. At Gianna’s 3-month
checkup, her developmental assessment
was normal. She was attentive to voices,
tracked objects, reached for toys, and lifted
her head and chest off a surface. At that
same appointment, she still had symptoms
of colic and GERD; nevertheless, a cocktail
of vaccines was administered. The day
after the 3-month visit, we noticed that
Gianna was eye rolling. In contrast to the
3-month assessment, at Gianna’s 4-month
checkup, it was noted that her head lagged,
she did not reach for objects, and her
hands were always clenched into fists. We
told Gianna’s pediatrician that she wasn’t
rolling on the floor anymore since our last
visit, her head was floppy, and her limbs
twitched. The doctor was concerned that
her arms were continuously in extension
(a straightening movement that increases
the angle between body parts). The doctor
also explained that some children develop
later than others. But that didn’t answer the
question of why Gianna regressed. So, we
assumed that since Gianna was swaddled
during a majority of her four months due
to being colicky, she needed more time to
develop to compensate for the swaddling.
Consequently, Gianna received a second
cocktail of vaccination shots at her 4-month
checkup. We now feel convinced that it was
imprudent to give vaccinations on top of the
underlying genetic metabolic disorder.
To reiterate: gastrointestinal problems,
eye rolling, and twitching started after
vaccination and before we introduced food.
At 6 months, we introduced pureed
food – sweet pototoes – and the following
day Gianna had her first grand mal seizure.
Gianna’s first birthday, 06-29-05
27
Although we now know that the vaccinations were not the cause of her original
disorder, CDG, we feel that shots caused and/or contributed to the severity of
some of the symptoms and/or comorbidities that followed.
The ER said it was a febrile seizure. (We
now believe it was not febrile because it
seemed that certain foods – particularly
certain carbohydrate-containing foods –
triggered seizures, which led us to the CDG
diagnosis.) At her follow-up appointment
with her pediatrician two days later, he
ordered an EEG and CT scan, the results
of which came back as normal two weeks
later. Within those two weeks, we still
noticed eye rolling and twitching, but not
a major seizure. At the appointment that
was two weeks following the first grand mal
seizure, a third series of vaccinations was
given. In the days immediately following,
we began to see more frequent seizures
that also were longer in duration. Six weeks
after the first grand mal seizure, another
EEG was performed and Gianna was
diagnosed with epilepsy. Gianna was in and
out of the hospital every few weeks from
uncontrolled seizures and pneumonia due
to saliva, milk, and pureed food aspiration
issues. Consequently, at 10 months, she
was being fed only by a G-tube. She had a
variety of seizure types lasting 30 seconds
to 2 minutes at up to 500 seizures a day,
and would become lethargic after each
seizure. Around this time, we noticed that
limiting foods high in carbohydrates was
helpful to the number of seizures, but
28
THE AUTISM FILE | www.autismfile.com seizures continued. Any bodily stress
such as illness, being overly tired, or even
an environmental temperature change
would increase her seizure activity. Having
a cluster of seizures would make Gianna
feverish and create a grand mal type
seizure.
At 1 year old, Gianna was shown to have
a broad range of seizure types. The majority
of her seizures were atypical absence
seizures associated with Lennox-Gastaut
syndrome, which brings with it a variety
of seizures, and which is diagnosed by an
EEG pattern. This was said to be a rare
situation for children under 2 years of age.
We switched pediatricians and discontinued
her vaccinations. Although we now know
that the vaccinations were not the cause
of her original disorder, CDG, we feel that
shots caused and/or contributed to the
severity of some of the symptoms and/or
comorbidities that followed.
Between 10 months and 2 years old, we
went to every specialist imaginable with no
luck in finding a diagnosis. Since Gianna
didn’t show any characteristics of any
known disorder, they suspected that she
“created” her own disorder unique to her.
Gianna had severe developmental delay,
could not eat by mouth due to aspiration
issues, was subject to reoccurring illness,
was hypotonic, had reflux, would not use
her hands, did not engage in eye contact,
and had no head control. At about 1 year
old, doctors told us that Gianna would
never be “normal” and most likely would
not live past 5 years old.
Again, Gianna was now a 1-year-old,
and we were still on a mission to find her
diagnosis. As her parents, having this
mission helped our healing process of
getting through knowing our little girl
wasn’t getting better and might not make
it. As you can imagine, having a child
with disabilities is very overwhelming.
You have your family, friends, and even
strangers telling you to see this specialist
or that doctor or try some therapy. With
the cost of insurance, co-pays, time
away from work, and loss of work, doing
every recommendation is impossible. We
listened and researched every piece of
advice given to us. When we heard about
hyperbaric oxygen therapy (HBOT), we
read more but did not see that it helped
children with seizures or metabolic or
genetic disorders. We asked Gianna’s
doctors and none of them knew much
about hyperbaric oxygen and said that it
probably would be a waste of money. Like
many of the recommendations we received,
we put this aside and focused on the
ISSUE 33 2009
traditional therapies and recommendations
from mainstream doctors. We later heard
about a story of a little girl with a very
rare condition affecting her mitochondria
whose mother was also on a mission to
help her daughter. We were told her story
was similar to Gianna’s and that we should
get a copy of an episode of the Montel
Williams Show. The show details supplied
the name of Shannon Kenitz, mom to
Grace, who later became our inspiration.
We were able to look up Shannon’s Web
site (www.ihausa.org) and watch the
segment of Montel Williams that featured
Grace’s story. After virtually living the first
three years of her life in the hospital and
considered in a vegetative state, doctors
refused to continue measures to prolong
Grace’s life. Shannon took her daughter to
receive hyperbaric oxygen therapy – the
only thing that was changed – and Grace
progressed to, among other things, being
off seizure and gastrointestinal medicines
and her feeding tube, walking, thriving, and
receiving normal EEG and muscle biopsy
results.
So, at 2.5 years old, Gianna was not
showing any sustained progress and was
diagnosed with CDG. As soon as Gianna
would make progress, she would get sick
and lose new skills that she had acquired.
Based on learning about Grace’s success, we
decided to try hyperbaric oxygen therapy,
making sure we did not change any variables
during the three-month period during which
we did the 40 recommended treatments
at 1.3 atm (mild hyperbarics). After one
month and 29 treatments, we almost
stopped the treatments because we did
not see any improvements in her behavior.
However, within the next few weeks,
Gianna created her own sign for “no,”
would track objects, and started noticing
things in her environment. Gianna started
to be motivated and played with toys for
the first time! We then learned that a new
clinic was opening, the California Integrative
Hyperbaric Center (CIHC) –
“A Place of Grace” – in Irvine, California,
which Shannon Kenitz was helping with.
Additionally inspired by this, we continued
doing hyperbaric treatments with Gianna.
We were encouraged by the fact that
Shannon’s daughter had been doing this for
so long and was doing well.
Due to the severity of Gianna’s seizures
ISSUE 33 2009 and the fact that any bodily stress or
increased heat caused her to have increased
seizures, we never worked with her
physically more than a few hours a day. Our
daily exercise routine was putting her in her
stander for at least an hour a day and her
gait trainer for one hour. But now, Gianna
wasn’t getting sick every week, and she was
becoming motivated without experiencing
setbacks. She started “asking” for particular
toys, enjoying television, using her hands,
and eating chopped food by mouth. In
2007, we enrolled Gianna in an intensive
suit therapy program at Napa Center for five
weeks at four hours per day. To our surprise,
Gianna was able to tolerate the four hours
of therapy. With such an improvement in a
short period of time, we realized we had to
continue at this pace in order not to lose
all the progress she had made in little over
one month’s time. We purchased our own
equipment in order to start a maintenance
home suit therapy program. We went to
another suit therapy training session in
combination with HBOT treatments at CIHC
in May 2009. The intensive therapy sessions
have built up her endurance, and Gianna
now can tolerate six hours of physical
therapy per day.
Gianna hates to be in her wheelchair and
will whine for us to work with her. Looking
back, we feel that after doing HBOT,
Gianna was not getting sick as often and
not having setbacks. We were then able to
get her on a new diet and off some of her
medications and able to start working with
her aggressively in physical therapy. All of
this has contributed to her overall success.
Doing intensive suit therapy has contributed
to her upper-body strength and has helped
improve swallowing and upper-respiratory
problems. In August 2008, Gianna was
discharged from feeding therapy and can
now safely swallow thin liquids. Intensive
therapy was something we never thought
could be possible with a child having
intractable seizures.
Gianna’s seizures have changed, and in
July 2009, we learned Gianna is having only
one type of seizure (tonic-clonic) with the
EEG pattern of infantile spasms. Although
she is still having frequent seizures, her
seizures now last only 2-5 seconds, she does
not get lethargic, and she remembers and
completes a task after each episode.
Gianna just turned 5 years old. She can
Within the last two years
of doing over 250+
hyperbaric treatments,
Gianna has amazed all
of her doctors.
spoon-feed chopped food herself, can get
up from the floor to a sitting position, can
sit unassisted for up to 5 minutes, and can
weight bear for up to eight minutes. Two
years ago, Gianna would get excited as she
watched us flip flash cards and turn pages
in her book. Her hands would reach out as if
she were going to flip the pages but would
then quickly retract back. We could see that
she wanted to turn the pages but just could
not physically do it. She can now turn pages
and flip flash cards over. Within the last
two years of doing over 250+ hyperbaric
treatments, Gianna has amazed all of her
doctors.
It’s hard to believe that just a little over
two years ago, we were wearing a stopwatch
to time Gianna’s seizures. We weren’t able
to leave her to go to the mailbox or even the
restroom. Now that she has improved, we
are no longer timing her seizures and have
been videotaping her progress. It’s really
unfortunate that we have no videos of her
when she was little. Who videotapes when
their child is having a seizure for over two
minutes, unable to hold her head up, can’t
manage her own saliva, and cannot even
hold an object or play with a toy?
Although Gianna is improving, she is still
having a seizure every 2-4 minutes. We are
continuing with her therapy treatments
and hope she will continue to progress.
We have come far, but we know that we
still have obstacles to tackle. We started to
post videos of Gianna on YouTube (www.
youtube.com/nataliedragotto). We feel it
is important to share our story so that other
parents know that anything is possible and
to NEVER give up. We feel that one day
nobody will believe Gianna had over 500+
seizures a day. Gianna is a totally different
child – healthier and engaged. Due to the
miraculous improvement of the nature and
effects of each seizure, we are optimistic
that her seizures will go away ... Just like
Grace, Gianna has outlived the doctors’
predictions ... Gianna is in a place of grace
and of hope.
29
Social and Academic Inclusion
through Accommodations and
Modifications to Curriculum
By Stephen Shore, EdD
“Accommodations are extensions of good teaching practice.”
T
he first part of this two-part article
explored the concept of categorizing
accommodations and modifications to
curriculums into nine domains. Five of those
domains were discussed in the January 2009
issue with the remaining four to be discussed
below. As in part one of this article, in
addition to examining different categories,
emphasis is placed on how these adjustments
made in educating children with learning
differences can be folded into the curriculum
as a whole, as an extension of good teaching
practice.
To reiterate:
Most accommodations fit into one or more of
these categories as seen below:
The previous issue left us in the depths of
Michael having difficulties with a geography
quiz requiring him to locate countries by
indicating their bordering nations or oceans.
Although Michael knows the information,
his expressive-language difficulties present a
barrier to his success. These communication
30
THE AUTISM FILE | www.autismfile.com challenges are further borne out as we find
sub-par demonstration of skills in creative
writing and mathematics. With support,
however, he performs above grade level in
drafting class and computer-aided design.
The educator is now challenged with
describing what may be causing Michael
difficulty in the first place, determining how
Michael’s strengths can be employed to
maximize his chances for success, and finally,
indicating how instructions for this geography
quiz can be modified to help Michael and
possibly other students as well.
Given Michael’s strengths in graphic design,
perhaps a computer program similar to “Know
Your States” at jimspages.com/States.htm
could be employed, allowing students to
demonstrate nonverbally where countries are
located. If a computer is not available, then
finding or making a puzzle of the countries
may be helpful. Since Michael has skills in
drafting, developing a unit of study in which
he actually draws out and creates a wooden
puzzle of the world’s countries would be
helpful on a number of different levels.
Finally, all students can be given the option
to answer these questions on geography
in ways that best fit their learning and
communication styles. By broadening the
options for response, this type of assignment
becomes yet another way to assess the diverse
student body educators encounter in class.
Difficulty Adapt the skill level, problem, type, or rules
on how the learner may approach the work.
Instead of answering questions in writing,
allow a verbal response, use a communication
book for some students, allow students
to show knowledge with hands-on course
materials, or encourage the student to use
helpful manipulatives such as rods or an
abacus for mathematics.
While calculating arithmetic problems in
one’s head is a very useful skill to have, some
students may be unable to perform these
mental gymnastics at any given time. Perhaps
it may be conducive to provide that student
with a calculator, abacus, or other device
that helps him or her at least be functional in
mathematics.
For example, I had a difficult time
memorizing multiplication times tables.
Fortunately, I discovered a “multiplier
pencil box” that served as a type of slide
ruler, enabling me to answer multiplication
questions. Shortly after, I figured out that
this tool could help me with long division as
well. After many weeks of working through
math problems with this box in the lowstress environment of my bedroom, I slowly
memorized the times tables and mastered
long division.
People learn skills at different rates. The
paths people take to mastering skills are
different for everyone.
Participation
Adapt to the extent to and/or way in which
a learner is meaningfully involved in a task.
In geography, have one student hold the
globe while others point out locations. Have
a student with difficulties in motor control
needed for team sports such as football or
baseball cheer the school athletes from the
stands or possibly serve as an assistant referee
if his or her observational skills allow.
Let us consider the case of meaningfully
including Valerie, a student on the autism
spectrum, in a chorus class and performance
ISSUE 33 2009
of international music.
Valerie needs to move, as action seems to
quiet her vocalizations. Does Valerie have
the rhythmic ability to play a percussion
instrument while the chorus sings? What
about having the chorus sway back and
forth while singing? Maybe Valerie could
do improvisational dance while the chorus
sings. These are only a few possibilities for
incorporating physical motion into Valerie’s
participation. I have seen a number of people
who may have difficulties with verbal and
other forms of communication, but have skills
in other areas.
A student with autism, Valerie is included
in senior chorus. Despite intensive
support from an aide and a well-planned
behavioral program, Valerie moans
continuously at a low pitch without regard
to whether her section is singing or not;
and that is when she is even able to stand
in place. You have noticed, however, that
when pacing around the room, Valerie
does not make a sound.
The music director is deeply concerned
by the possible negative effect this
behavior will have on the year-end
concert of international music.
How might you help the music director
while keeping Valerie meaningfully
included in the chorus rehearsals and the
performance?
Yet another possibility might be to directly
employ Valerie’s need to pace and allow her
to walk about the auditorium holding a flag of
the country from which a song is being sung.
And who’s to say that Valerie should be the
only one holding a flag marching about the
auditorium?
Providing socially-based accommodations
consisting of activities any student could do
enables meaningful participation for the entire
class. The key is to work with the skills Valerie
has.
Alternate Activity
Adapt the goals or outcome expectations
while using the same materials.
In social studies, expect a student to be able
to locate just the states while others learn to
locate capitals as well.
There are times when all the accommodations possible will not empower a
student to engage in activities and learning
at the same level as their classmates. In these
situations, the educator involves the autistic
ISSUE 33 2009 Inclusion – The Nexus of a Person’s Needs with Available Resources
Meaningful involvement of the person with a disability throughout life
Inclusion is a Spectrum
or other special needs student in a way that is
meaningful to the entire class.
For example, perhaps a student more
significantly impacted with autism could
help with distributing course materials – or
putting them away. Perhaps another student
with different skills can play a percussion
instrument in a band. It also may be that,
given the great diversity in strengths and
challenges for those on the autism spectrum,
these students have skills in the arts, math,
computers, or other areas that are way beyond
their chronological age.
For example, a child with a deep interest in
a subject such as earthquakes could prepare a
report to the class on causes and safety when
one occurs. Providing all the students with
this type of opportunity would then include
this child in activities that the entire class is
doing. I remember presenting a report on the
solar system to my third-grade class when I
had a deep interest in space exploration and
enjoyed doing so immensely.
Substitute Curriculum
Provide different instruction and materials
to meet a student’s individual goals yet still
remain aligned with the curriculum.
During a writing test, one student is learning
computer skills like keyboarding in the
computer lab, enabling completion of writing
assignments.
Taking a limited amount of class time to
educate a student on an alternate means of
demonstrating mastery of a topic or skill can
work well. For example, for a person having
difficulty with the physical act of writing,
taking time from an essay session in class to
learn how to type on an AlphaSmartTM or other
keyboarded device can be very helpful.
Teaching the aforementioned skills can
take place in a separate station within
the teaching space or at the back of the
classroom. It is important, however, to assure
that this temporary “pull out” from the
regular classroom activities does not result in
“geographical inclusion.”
Geographical inclusion occurs when a
student is physically in the same room as the
others but continues to work on materials
often unrelated to the subject at hand,
usually with a paraprofessional. This type of
situation misinforms the regular education
students that those with special needs are
very different creatures from the “rest of
us,” which is contrary to the philosophy of
inclusion.
Like with autism and so many other
things, inclusion is currently a spectrum of
involvement for people with disabilities.
While 100 percent inclusion is a goal to strive
for, doing so is not always possible or even
advisable with the resources we are given.
Many times academic and/or behavioral
challenges exceed what an educational
institution is able to provide in a given
situation.
As described in this article, however,
academic and social accommodations are
actually merely extensions of good teaching
practice. With greater attention paid to
differences in learning styles and social
interaction, regular education becomes more
accessible to a greater range of students to the
benefit of all involved and society as a whole.
Inclusion in society is not an afterthought,
but rather a right of all humans, regardless of
ability.
References
Deschenes, C., Ebeling, D., and Sprague, J.,
(1994). Adapting Curriculum and Instruction
in Inclusive Classrooms: A Teacher’s Desk
Reference. Bloomington, IN: Indiana University
Educational Services
Shore, S. and Rastelli, L. (2006).
Understanding autism for dummies.
New York: Wiley Publishers.
31
EDITORIAL
The Autism File appoints a Scientific Editor:
Dr. Carol Stott
A
s this is my first editorial in my
role as scientific editor for The
Autism File, I thought I would
start by giving some background about
who I am and where I’ve been until now.
My background is in psychology and
epidemiology. From 1991 to 2004, I was
employed by the University of Cambridge
in the United Kingdom, initially as a
research assistant in the Department
of Psychiatry, Developmental Section.
I then worked for several years in the
department’s Autism Research Centre
(ARC) under the guidance of Prof. Ian
Goodyer, Prof. Simon Baron-Cohen, and
Dr. Patrick Bolton. I completed my PhD in
the department in 2001 and went on to
work as a post-doctoral scientist with the
ARC over the next few years. The main
focus of my work at that time was the
identification, prevalence, natural course,
and outcome of childhood developmental
disorders – particularly specific language
impairment (SLI) and autism spectrum
disorders (ASDs).
After completing my PhD, as my interest
in the possible causes and increasing
prevalence of ASDs developed, I also
undertook additional post-graduate
training in epidemiology and advanced
biostatistics. In June 2008, I completed
my MSc at the London School of Hygiene
and Tropical Medicine in epidemiology:
A
utism science is currently very
polarized, characterized by heated
debates on causation, prevalence, and
treatment. My experience during the last 18
years has given me invaluable insight into the
views presented on both sides of the divide.
I have seen firsthand the reluctance of the
mainstream scientific community to embrace
the possibility of a role for vaccines in autism
causality, and I have been given very clear
and often uncomfortable indications of the
reasons for this reluctance. Nonetheless,
important questions are still being asked,
32
THE AUTISM FILE | www.autismfile.com principles and
practice. This
left me better
equipped to
tackle some
of the major
issues in autism
research that had begun emerging at the
turn of the century.
By the time I received my MSc, a great
deal had changed in my professional life.
My increasing interest in the potential
impact of environmental factors (including
childhood vaccination) on the rise in ASD
diagnosis meant that a parting of the
ways with my Cambridge colleagues was
inevitable. I left the department following
my contribution to a major prevalence
study on ASD and joined the research
team at Thoughtful House Center for
Children of Austin, Texas, as a contractual
senior research associate to Dr. Andrew
Wakefield.
My role at Thoughtful House is to advise
on appropriate research methodologies, to
evaluate the scientific literature on issues
relating to causality and treatment of
ASDs, and to carry out statistical analyses
of data generated by the Thoughtful
House clinical and research programs. It
is a challenging and rewarding role – one
which involves quite a commute as I am
still based in Cambridge, England!
research is ongoing, and science will, in the
end, provide the answers, whatever those
answers may be. There is a great deal of
uncertainty around many important issues
in autism research, but one thing is certain:
whatever false and unqualified claims
are made about “discredited research,”
“fake data,” “conflicts of interest,” and
“lone mavericks,” the possible role of
environmental factors in the onset of ASDs
is still very much on the table and forms a
central part of the international research
agenda.
The scientific editorial team at The Autism
File will strive to bring you up-to-date on
important developments in autism research in
a balanced and objective way. From January
2010 forward, each edition will contain a
summary of newly published literature, with
selected articles given in-depth reviews
by the editorial team. The next edition
will also see the beginning of a number of
commissioned systematic reviews of the
existing literature on topics of interest.
For those unfamiliar with the term, a
systematic review is a summary of research
that uses explicitly stated methods to
perform an extensive literature search.
It involves critical appraisal of studies to
identify the valid and applicable evidence,
and statistical techniques are often used to
combine the essential findings from various
studies in order to summarize the data in a
quantitative way. A particular feature of any
systematic review is its use of an objective
and transparent approach to research
synthesis, with the aim of minimizing bias
and maximizing replicability.
The systematic reviews commissioned by
The Autism File will aim to be of peer-review
standard, but inclusion in the magazine
will enable a wider readership than would
be the case if the work was submitted to
and accepted by peer-reviewed academic
journals.
The first systematic review will focus
on the possible association between
gastrointestinal disease and ASDs. Other
topics for systematic review will include:
ASDs and environmental factors in causation;
and biomedical, educational and behavioral
interventions and their effect on ASD
outcome.
Another important development is the
redesign of The Autism File website. Work
is currently ongoing, and the new Web site
is scheduled for completion by the end of
October 2009. The new design will improve
The Autism File’s Web presence by combining
innovative and informative site content with
other Web-based projects. We have a rapidly
developing Facebook presence, comprised
of “The Autism File Info Group” and several
Facebook pages: “Autism File Magazine,”
ISSUE 33 2009
“Autism Mothers,” “Autism File Brothers and
Sisters Online,” “Dr. Wakefield’s Research
Must Continue,” “The Autism File: Scientists,
Educators and Clinical Practitioners,” and “The
Autism File Conference.” You can also follow
The Autism File teams on Twitter at http://
twitter.com/AutismFile (general) and
http://twitter.com/AFscience (science).
Of particular note for scientists and those
interested in autism science, there is “The
Autism File: Scientists, Educators and Clinical
Practitioners’” Facebook page. This will
provide an opportunity for professionals
in the autism world to discuss the latest
F
innovations, news, and developments in
their field. We will also keep you abreast
of the latest news snippets and reports
from conferences and academic meetings
via Twitter at “AFscience.” Finally, our new
Autism File science blog will be up and
running from the end of October.
The ultimate aim of The Autism File
scientific editorial team is to produce high
quality scientific content of peer-review
standard. We are in the process of developing
a strong peer-review team that will oversee
submissions of scientific articles, selecting
those suitable for publication in the peer-
Call for Papers
rom January 2010 forward, The Autism
File magazine will begin publication of a
series of peer-reviewed case reports from
leading practitioners in the autism field. We
are now calling for papers from practitioners
and educators in the field. The submission
should be an original report describing
the presentation, course of disorder, and/
or response to treatment in an individual
patient or group of patients. Emphasis should
be placed on the descriptive rather than
analytical nature of the report. Papers should
not previously have been published or be
under consideration for publication elsewhere
and should be no longer than 4,000 words in
length, with a maximum of 35 accompanying
end references. Images that illustrate
important physical signs are encouraged.
Additional guidelines for authors are as
follows:
 Each paper submitted will be refereed by at
least two anonymous referees.
 While maximum text length should be
4,000 words and the total number of end
references should not exceed 35 entries, we
may, in exceptional circumstances, be able to
accept manuscripts that exceed this length.
This should be discussed with the scientific
editor before submission.
 In order to protect the identity of clients or
participants, authors should use pseudonyms
and remove any information leading to
identification of any of the individuals
described in the study. Care should be taken
not to obscure important physical signs when
anonymizing images.
 For anonymous peer review, authors should
provide two title pages: 1) one containing
names, affiliations, full street and e-mail
ISSUE 33 2009 review section of the magazine. Our current
call is for practitioners to submit case review/
case series articles of up to 4,000 words
in length with a goal of publication from
January 2010 forward (see following page).
In the words of Sir Cyril Herman
Hinshelwood (1897-1967), English chemist
and Nobel Prize winner (1956), “Science is an
imaginative adventure of the mind seeking
truth in a world of mystery.”
Truth will win out in the end, and the
scientific editorial team will do its very
best to communicate it to The Autism File
magazine readership.
addresses, and telephone and fax numbers;
and 2) one containing the title only.
 Please number all pages except the title
pages in the following order: abstract (150200 words), keywords (up to five), address
for correspondence; main text: introduction,
methods, results, discussion, conclusions;
appendices; acknowledgements; references;
tables; figure captions; figures. Each of the
aforementioned sections should start on a
new page.
 Articles submitted for publication must
be set in double spacing throughout with
generous left- and right-hand margins. Titles
and section headings should be clear and
brief.
 Please use a single space between
sentences and following colons.
 Tables and figures should have short
descriptive titles and be clearly numbered. All
footnotes to tables should be typed below
the table. Camera-ready artwork must be
provided for all figures. Please supply images
in color as .tiff .eps or .jpg files of 300 dpi at
100% print size. The approximate location of
tables and figures in text should be indicated
by a note “table/figure about here” in a
separate line of text.
 References in the text should be numbered
in order of appearance and the end reference
should comprise all references in numerical
order. End references should appear in the
following styles:
Journal: Hertz-Picciotto, I and Delwiche,
L, The rise in autism and the role of age at
diagnosis. Epidemiology, 2009; 20:84–90.
Book: Kandel, E, Schwartz, JH and Jessel, TM
(2000) Principles of Neural Science.
New York: McGraw-Hill
Edited Book: Bauman, M and Kemper, TL
(eds) The Neurobiology of Autism, Baltimore:
Johns Hopkins University Press
Edited Book (in book
reference):Schmahmann, JD (1994) The
cerebellum in autism: clinical and anatomic
perspectives. In M Bauman and TL Kemper
(eds) The Neurobiology of Autism. Baltimore:
Johns Hopkins University Press; pp. 195-226
Web: Hollenbeck D CDC: Sitting on Autism
Data? [Web Newspaper] 2008 [date
cited]; Available online at http://www.
ageofautism.com /2008/05/cdc-sittingon.html.
 In multi-authored articles, the names of all
authors should be provided in the reference
list. Where names appear in the text, if there
are more than two names, please give the
first and then “et al.”
 Please avoid use of jargon or unnecessarily
technical language. Wherever possible please
refer to “children or adults with autism”
rather than “autistic children or adults” and
avoid the use of adjectives as nouns (e.g.,
“autistics”).
 Abbreviations not in common usage should
only be used after the full term has been
included once in the text, accompanied by
the relevant abbreviation in parentheses.
Common usage is defined as abbreviations
used frequently enough to be dictionary
entries.
 On acceptance of a paper for publication,
authors will be asked to assign copyright to
The Autism File magazine.
 Please submit manuscripts for review to
tessa@autismfile.com
33
BIOMEDICAL
The Utilization of Laboratory
Biomarkers to Predict and Prevent
Neuroimmune Disorders caused by
Environmental Stressors
By Kendal Stewart, MD and Lisa Hunter Ryden, MT (ASCP), MBA
Kendal Stewart, MD, is the chief
medical officer of the NeuroSensory
Center of Austin. He is board certified in
otolaryngology with fellowship training
in neurotology/skull base surgery. His
experience includes advanced training
in neurosurgical, neurological and
immunological disorders. Dr. Stewart
has extensive experience with advanced
neurological and audio-vestibular
techniques and has authored two
medically related patents in this area. He
has had specific research interests in vestibular disorders, athletic
injuries of the nervous system and processing/sensory integration
disorders. Dr. Stewart has developed innovative and highly effective
treatment protocols for neurological diseases including Meniere’s
disease, imbalance, vertigo, autism spectrum disorders, and “postconcussion” syndrome. He has authored papers and is extensively
involved in lectures and instructional courses for physicians, therapists
and other health care professionals.
Lisa Hunter Ryden, MBA, also has a
degree in medical technology and post
graduate coursework in microbiology,
molecular genetics and immunology.
She began her career as a clinical medical
technologist and has spent the past
20 years in the medical diagnostics
industry. She communicates her extensive
knowledge of biomedical treatment to
the autism community as a means to help
physicians and parents develop a best
practices model and develop a partnership
to recover their children. Lisa hosts a program with Dr. Kendal Stewart
on Autism One Radio, has given numerous public presentations on
autism biomedical treatment, written several articles, and served as
a parent advocate in political and legislative autism issues. Lisa and
her husband have two boys. Their oldest son, Jake, suffered autistic
regression at age 12 months, and was nonverbal until age 5. Today
at age 8, he is recovering from his symptoms, speaking in sentences,
writing, and learning to read. A new case of autism is diagnosed every 20 minutes in the United States.
I
n 2007, the Centers for Disease
Control and Prevention (CDC) Autism
and Developmental Disabilities
Monitoring (ADDM) Network released
data indicating that in many parts of
the United States, about one in 150
children who are 8 years old had an
autism spectrum disorder (ASD)1. The
autism community, including educators
and physicians who treat these children,
believes that prevalence is much
higher. While the cause for the autism
epidemic remains the subject of much
controversy, many parents report having
babies who met every milestone until
12-18 months of age, after which they
manifested regressive tendencies and
34
THE AUTISM FILE | www.autismfile.com loss of speech or eye contact, and
acquired peculiar behaviors, seizures
and/or gastrointestinal illness. These
same parents report that these occurred
following a round of childhood vaccines.
Especially in the case of a first or only
child, some parents do not realize that
their child is not meeting the standard
developmental milestones until the child
is 3 years old or older. Parents may notice
a speech delay and/or poor socialization
followed by strange behaviors such
as hand flapping, lack of eye contact,
toe walking, and a desire for repetitive
stimulation.
The National Vaccine Advisory
Committee 2 needs to fund independent
research toward the safety of vaccines
so public trust in these vaccines can be
restored and parents will have confidence
that the current vaccine schedule
is safe for all children of all genetic
predispositions. The recent court cases
of Poling and Banks have favored the
plaintiffs as the rulings declared that
vaccines contributed to both Hannah
Poling’s and Bailey Banks’ autism. In the
Poling case, Hannah was diagnosed with
a mitochondrial disorder which allegedly
caused her to have an adverse reaction to
childhood vaccines3. Despite thousands
of similar cases pending in the vaccine
injury court, a single judge without
a jury recently concluded the first of
ISSUE 33 2009
three cases lacked sufficient evidence to
prove that vaccines contributed to the
respective child’s autism4.
As a result of such recent court cases
and conflicting information, many
new parents have a hard time making
educated decisions about how to
safely vaccinate their children. In fact,
pediatricians are reporting a growing
public concern over vaccines, and many
parents are asking about vaccine safety.
To date, no adjustments have been made
to the childhood vaccine schedule by
the American Academy of Pediatrics or
the CDC. As a safeguard, however, many
parents have begun to request staggered
or delayed vaccination schedules, much
to the consternation of their pediatricians
and contrary to the CDC warning that
this is a dangerous practice that has not
been proven to be effective or a safe
community practice. Parents argue that
they have not seen sufficient safety data
to show that the current vaccine schedule
has been proven to be safe with regard
to all combinations and intervals of
vaccines5. In fact, the majority of safety
studies have been performed on one
vaccine at a time, not multiple vaccine
combinations. New vaccines are quickly
added to the CDC childhood schedule,
and more than 100 new vaccines are in
clinical trial or in the development phase.
Although there are specific genetic
tests and protein biomarkers that can
provide insight into the status of a
child’s neuroimmune system, they are
not used as an assessment tool for
vaccine safety. Geneticists continue to
look for a common gene or set of genes
implicated in autism; however, they
have found nothing conclusive after
10 years and millions of dollars spent
in genetic research. While autism has
grown to epidemic proportions, there
is a general consensus among genetic
researchers that there is no such thing
as a genetic epidemic. But it is widely
accepted by these same researchers
that there, most likely, is a genetic
predisposition increasing the potential for
specific children to undergo a regression
in development following one or more
vaccines, an environmental insult, or
another oxidative stressor.
Dr. Sandra Jill James, a research
professor in the college of medicine
department of pediatrics at the Arkansas
Children’s Hospital, mapped the
methylation pathway and demonstrated
how impairments in this pathway can
cause abnormal levels of specific amino
acid biomarkers that directly reflect
the potential for oxidative stress to
impact children with a diagnosis of
autism 6. Genetic polymorphisms in
the methylation and transsulfuration
pathways can lead to a significant
decrease in glutathione production,
thereby inhibiting the body’s ability
to clear heavy metals and other fatsoluble toxins. In children with impaired
pathways who are subsequently impacted
by oxidative stressors, classic clinical
presentations include reduced levels
of methionine, cystathionine, cysteine,
glutathione, methyl-B12, methyl-folate,
and B6. Other notable biomarkers in
children with autism include reduced
levels of transferrin, cerumoplasmin,
and L-carnitine, and increased levels
of neopterin, biopterin, isoprostane,
8 OHG, ammonia, and lactic acid.
Children with these findings typically
present with many microbiological
pathogens, including persistent viral,
fungal, bacterial, and even parasitic
infections due to poor modulation of the
lymphocytic and, possibly, innate immune
system. They can present with intestinal
dysbiosis as indicated by an overgrowth
of yeast and bacterial pathogens, which
suppress the healthy balance of gut flora
and impact the body’s inflammatory
status, nutrient absorption, and intestinal
transition times. This abnormal state
creates the “leaky gut” syndrome,
which was first described by Dr. Andrew
Wakefield7,8 and later was confirmed
by multiple gastroenterologists. The
consequence of leaky gut is that patients
develop severe food intolerances and
food sensitivities due to microscopic
proteins leaking out of the gut and
causing immunomodulation. Therefore,
general clinical logic would link a group
of genetic polymorphisms, which should
produce specific identifiable protein or
vitamin biomarkers, to abnormalities of
immune function or modulation in these
children that directly impact their ability
to handle the oxidative stress of the
normal vaccination schedule or chronic
infectious state.
At this time, no research studies
have been performed on newborns
to determine if there are associated
abnormal biomarkers present at birth
for children who eventually develop
ASD. Therefore, as of this writing, no
specific biomarker has been identified in
infants who eventually develop ASD that
could be used as a newborn screening
tool, the usefulness of which would be
Geneticists continue to look for a common gene or set of genes implicated in autism; however, they have
found nothing conclusive after 10 years and millions of dollars spent in genetic research. While autism
has grown to epidemic proportions, there is a general consensus among genetic researchers that there is
no such thing as a genetic epidemic. But it is widely accepted by these same researchers that there, most
likely, is a genetic predisposition increasing the potential for specific children to undergo a regression in
development following one or more vaccines, an environmental insult, or another oxidative stressor.
35
BIOMEDICAL
to assess the potential adverse effects
of the oxidative stressors resulting
from vaccination or exposure to other
environmental toxins or chemicals.
Physicians who specialize in ASD and
other neurodevelopmental delays use
biomarkers in older children to assess
immune dysfunction, potential for toxic
burden, presence of pathogens, and
status of gastrointestinal function. Doing
research with younger children who
develop autistic tendencies can be quite
difficult and is impacted by the referral
pattern of pediatricians who typically
are first consulted when a child begins
showing early signs of abnormalities.
These children are usually referred to
a pediatric neurologist or psychiatrist
for developmental or behavioral issues.
Next, they may be referred to an
allergist for their food allergies or to a
gastroenterologist for gastrointestinal
issues. The abnormal laboratory findings
are typically only found once the child
is seen by a physician specializing in
autism, and this is usually later in the
child’s development. Unfortunately, the
American Medical Association and the
American Academy of Pediatrics have
not set up a best practices road map for
treatment of ASD. Autism “centers of
excellence” are emerging; but there are
too few specialists available to treat the
growing number of ASD patients.
The National Newborn Screening and
Genetics Resource Center (NNSGRC)
is a cooperative agreement between
the Maternal and Child Health Bureau’s
genetic services branch and the
University of Texas at San Antonio’s
Health Science Center’s department of
pediatrics. Its Web site provides a wealth
of information about newborn screening,
mainly in the United States, and lists the
congenital disorders that can be detected
in a newborn 9. While there is a set of
national recommendations for which
disorders are screened for in infants, each
state determines its own panel, based
on cost to the state health department
or other factors such as demographics.
Newborn screening is performed within
the first few hours of birth via a heelstick sample spotted on filter paper in
the hospital. The dried blood samples are
sent to the state health department and
recorded for each newborn via a number
system. Standard screening for genetic or
protein abnormalities is then performed,
and results are usually available to
parents within two to four weeks.
Abnormal results are communicated to
physicians who refer parents to genetic
counselors to advise them about the
detected disorder. The filter papers for
all newborn screenings are saved for a
period of five to 10 years depending on
the state requirement. There are very
informative documents and transcripts
of past meetings on the bioethics of
newborn screening on the Web site for
the President’s Council of Bioethics10.
If we carefully examine the newborn
screening profile performed today,
we can find a long list of recognized
congenital disorders of amino acid
metabolism that potentially indicate
The holy grail for medical care on the issue of vaccination safety
is identifying a consistent biomarker or group of biomarkers that
could indicate a compromised immune status or a potentially poor
response to oxidative stress.
36
THE AUTISM FILE | www.autismfile.com a poor response to oxidative stress.
Many of the abnormalities in amino acid
metabolism being screened for in the
program represent the same markers that
are recognized as abnormal in children
who ultimately develop ASD. What we
can’t determine, due to lack of scientific
research, is if the abnormal levels of
specific biomarkers found in children
who currently have autism were present
at the time of birth or in infancy. Based
on current research at our institution
and in other centers specializing in
children with autism, we have reason
to believe that the recognized amino
acid concentration abnormalities in
children with ASDs may have been
present at birth and represent the
genetic predisposition that defines the
potential for autism development when
environmental stressors are added to
the equation. This will be the topic for a
follow-up article.
The state-mandated newborn
screening program for metabolic core
disorders has established reference
ranges for only specific disease states;
thus, reports are made only if the
reference level is out of the defined
range. For example, a disorder known
as hypermethioninemia is only reported
if the methionine levels are too high.
It is widely known that many children
with regressive autism present with
hypomethioninemia (low levels of
ISSUE 33 2009
Our hope is that autism will be redefined as a neuroimmune or
epigenetic disorder with autistic regression as a symptom.
methionine). In addition, according to
the Screening, Technology and Research
in Genetics (STAR-G) project’s own
literature, the amino acid disorder,
hyperhomocysteinemia (too much
homocysteine) is a disorder that can
cause mental retardation and/or
speech delays if left untreated. The
recommended treatment is folic acid,
B12, and B6 supplementation and a low
methionine diet (no dairy or wheat)11
which is a recognized amino acid
metabolic deficiency in some children
with autism. In a study by Sarah Aldred,
measured plasma amino acid levels in
autistic patients, their siblings, and
parents showed that children with ASD
come from a family background of
dysregulated amino acid metabolism,
providing further evidence for an
underlying biochemical basis for their
condition12. In summary, it should be
possible to retrospectively examine the
amino acid concentrations of blood
samples collected at birth in any state for
abnormalities in amino acid biomarkers in
children who were later diagnosed with
regressive autism.
The holy grail for medical care on
the issue of vaccination safety is
identifying a consistent biomarker or
group of biomarkers that could indicate
a compromised immune status or a
potentially poor response to oxidative
stress. Once recognized, a rapid, bedside
test cartridge for these biomarkers could
be developed for use prior to vaccinating
the child. Additionally, a biomarker
panel determination that a child could
not safely be vaccinated according to
the recommended vaccine schedule
could reduce, if not eliminate, the need
for parents to be questioned about
medically-based vaccine exemptions.
This biomarker panel would be valuable
in states that do not allow religious or
philosophical exemption from vaccines.
We feel quite confident the identification
of these biomarkers is close at hand.
Pending the advancements in medical
technology, parents are expected to
vaccinate their children without question.
ISSUE 33 2009 The best advice that we can give them is
to educate themselves before vaccinating
their children and to consider the legal
and ethical options available in their
state.
Newborn screening presents
significant bioethical challenges. There
is increased liability in the event of a
false-positive or false-negative test,
which can dramatically alter a course of
treatment in congenital disorders. Most
likely, many parents would not want their
child to have a label of “autistic” at birth.
In the age of personalized medicine,
based on individual genomic differences,
it will eventually be possible for every
single individual to have a genetic profile
performed at birth to assess genetic
risk factors for certain diseases. For
insurance reporting, the implications
of genomic profiling are likely to cause
many to fear discrimination by disease
state, and this information is likely
to be used to determine the cost of
insurance coverage. We will probably
need legislation to protect individuals
from discrimination based on genomic
profiling. We know certain individuals
can smoke without developing lung
cancer or emphysema, yet others,
non-smokers even, develop smokingrelated diseases based on their genetic
predisposition. There is growing research
that we can change the way our genes
are expressed with biomedical or dietary
intervention, even if we cannot change
our genes. In short, we should be
discussing issues now. As there continues
to be a surge in epigenetics (the codependent role of environment and
genes) we will need to be proactive with
the ethical issues surrounding our future
generations. Our hope is that autism
will be redefined as a neuroimmune
or epigenetic disorder with autistic
regression as a symptom. For parents of
a child with autism, these ethical issues
are of little concern when we discuss the
possibility of recognizing risk factors at
birth and preventing even one more case
of autism … perhaps even staunching
the epidemic.
References
1
CDC Web site, http://www.cdc.gov/
ncbddd/autism/overview.htm
NVAC Web site, http://www.hhs.gov/
nvpo/nvac/index.html
2
Generation Rescue Web site, http://
www.generationrescue.org/cases/
index.htm
3
Autism Omnibus Web site, http://
www.uscfc.uscourts.gov/omnibusautism-proceeding
4
5
Fourteen Studies Web site, http://
www.fourteenstudies.org/studies.html
James SJ et al., Metabolic biomarkers
of increased oxidative stress and
impaired methyllation capacity in
children with autism. Am J Clin Nutr.
2004 Dec; 80(6):1611-7. http://www.
ajcn.org/cgi/reprint/80/6/1611
6
7
Presentation on Autistic Enterocolitis,
http://www.thoughtfulhouse.
org/0405-conf-awakefield.htm
Wakefield AJ, Anthony A, Murch SH,
Thomson M, Montgomery SM, Davies
S, Walker-Smith JA. Enterocolitis in
children with developmental disorder.
American Journal of Gastroenterology
2000;95:2285-2295
8
9
National Newborn Screening and
Genetic Resource Center (NNSGRC)
Web site: http://genes-r-us.uthscsa.
edu/
The President’s Council on Bioethics
Web site documents: http://www.
bioethics.gov/reports/newborn_
screening/chapter3.html
10
http://www.bioethics.gov/reports/
newborn_screening/Newborn%20
Screening%20for%20the%20web.pdf
The Screening, Technology and
Research in Genetics (STAR-G) Project
http://www.newbornscreening.info/
index.html
11
12
Aldred S. Plasma Amino Acid Levels in
Children with Autism and Their Families,
J Autism Dev Disord. 2003 Feb; 33(1):
93-7
37
HISTORICAL PERSPECTIVE
By Andrew Wakefield, MB, BS, FRCS, FRCPath
Andrew Wakefield, MB, BS, FRCS,
FRCPath, is an academic gastroenterologist.
He graduated in Medicine from St.
Mary’s Hospital (part of the University
of London) in 1981, pursuing a career in
gastrointestinal surgery with a particular
interest in inflammatory bowel disease. He
qualified as Fellow of the Royal College of
Surgeons in 1985, and in 1996 was awarded
a Wellcome Trust Traveling Fellowship to
study small-intestine transplantation in
Toronto, Canada. Discoveries made during
his work in Canada led him to return to the
United Kingdom to pursue the study of
inflammatory bowel diseases such as Crohn’s
disease and ulcerative colitis. In 1998, Dr.
Wakefield and his colleagues at the Royal
Free Hospital in London reported a novel
inflammatory bowel disease in children with
developmental disorders such as autism; the
condition later became known as autistic
enterocolitis. He was awarded the Fellowship
of the Royal College of Pathologists in
2001. Dr. Wakefield is involved in many
scientific research collaborations in the
United States and abroad centering on the
immunologic, metabolic, and pathologic
changes occurring in inflammatory bowel
diseases such as autistic enterocolitis,
links between intestinal disease and
neurologic injury in children, and the
possible relationship of these conditions to
environmental causes, such as childhood
vaccines. During the course of his work on
childhood developmental disorders, Dr.
Wakefield was increasingly convinced of the
need for a research-oriented, integrated
biomedical and educational approach
to these disorders, in order to translate
clinical benefits for affected children into
measurable developmental progress; this
is the driving aim of Thoughtful House
Center for Children in Austin, Texas. He
has published over 130 original scientific
articles, book chapters, and invited scientific
commentaries.
38
THE AUTISM FILE | www.autismfile.com O
n February 28, 1998, twelve
colleagues and I published
a case series paper in The
Lancet, a respected medical journal, as
an “Early Report”1. The paper described
the clinical findings in 12 children with
an autistic spectrum disorder (ASD)
occurring in association with a mildto-moderate inflammation of the large
intestine (colitis). This was accompanied
by swelling of the lymph glands in the
intestinal lining (lymphoid nodular
hyperplasia), predominantly in the last
part of the small intestine (terminal ileum).
Contemporaneously, parents of 9 children
associated onset of symptoms with MMR
exposure, 8 of which were reported in the
original paper (see also Child PH’s story
on following page). The significance of
these findings has been overshadowed by
misunderstanding, misrepresentation, and
a concerted, systematic effort to discredit
the work. This effort, and specifically the
complaint of a freelance journalist and an
intense political desire to subvert enquiry into
issues of vaccine safety and legal redress for
vaccine damage, culminated in the longest
running and most expensive fitness to
practice case ever to come before the United
Kingdom’s medical regulator, the General
Medical Council. At this point, the evidence
is in and the outcome is awaited. Now, and
only now, with all of the contemporaneous
documentation available, is it timely to review
both the original paper and its legacy.
Background
From the late 1980s, my team at the Royal
Free Medical School, the Inflammatory
Bowel Disease Study Group, published
extensively on possible causes and
mechanisms of inflammatory bowel disease
(e.g., Crohn’s disease). This involved
examination of a possible causal role for
measles and measles vaccine. In May 1995,
parents started contacting me with the
story that their normally developing child
had regressed into autism or an autism-like
state, with onset in the majority of cases
soon after MMR vaccine. At around the
same time, the children had developed
chronic gastrointestinal (GI) symptoms
similar to those described by Dr. Lenny
Gonzalez in the July 2009 edition of The
Autism File2 . Despite what were often
debilitating intestinal symptoms, many
indicative of abdominal pain, few of
these children had undergone physical
examination, let alone been investigated.
Mention of the MMR vaccine had often
alienated parents further from their child’s
health care providers. Many doctors
attributed the onset of symptoms to
coincidence and were content to leave it
at that. Conversely, at the Royal Free a
systematic plan of clinical care and research
was designed in order to help affected
children.
The first report on these children
appeared in February 1998. The purpose of
this series of articles is to review The Lancet
ISSUE 33 2009
C
hild *PH’s story, as originally told by his mother, did
not cite MMR as the culprit. Eighteen months of
normal development was followed by regression, giving rise
to what several doctors labeled “secondary autism.” Loss
of developmental milestones was accompanied by loss of
coordination (he could no longer throw and catch a ball), his
gait became, “awkward and stiff like an old man,” and he could
no longer go from sitting to standing unaided. He lost the
twenty words that he had gained and developed secondary
fecal incontinence. At eighteen months of age, severe
episodes of abdominal pain started that were associated with
screaming and drawing his knees to his chest. He developed
a pattern of chronic loose bowel motions with undigested
food from two years of age. He went from the 97th centile
for weight at 1 year of age to the 50th by age 2. His diet went
from being varied to very restricted, consisting of refined
carbohydrates and at least ten 200ml cartons of orangeflavored drink per day.
What Child PH’s mother did not tell us in 1996 was that,
contemporaneously, she too had linked her son’s problems
to MMR vaccine. Our description of this child in The Lancet
faithfully reiterated the onset of symptoms following an
episode of otitis media as his mother had reported but made
no mention of the MMR. The reason for this discordance in the
narrative provides a valuable lesson: the reaction of successive
doctors to the suggestion that MMR might have been involved
ranged from patronizingly dismissive to outright hostile.
Mentioning the vaccine was beginning to negatively impact
their ability to get help for their son. By the time they came
to the Royal Free Hospital, the father had urged his wife not
to mention the MMR again in order to avoid discrimination by
doctors who considered her to be crazy.
So it was that a potentially important element of the clinical
history in this child had been corrupted by the arrogance of
those who “knew better.”
*Initials have been changed.
Myths: The Lancet paper
was funded by the Legal Aid Board (LAB)4 alse – Not one penny of LAB money was spent on The Lancet paper. An LAB grant was provided for a separate viral detection
F
study. This latter study, completed in 1999, does disclose the source of funding. The Lancet paper had been submitted for
publication before the LAB grant was even available to be spent.
my involvement as a medical expert was kept “secret”5
False – at least one year before publication, my senior co-authors6, the head of department and the dean of the medical school7,
and the CEO of the hospital were informed by me. This fact was also reported in the national press 15 months prior to publication8.
children were “sourced” by lawyers to sue vaccine manufacturers5
False – Children were referred, evaluated, and investigated on the basis of their clinical symptoms alone, following referral from the
child’s physician9.
 children were litigants10
False – at the time of their referral to the Royal Free, the time material to their inclusion in The Lancet paper, none of the children
were litigants.
I had an undisclosed conflict of interest11
False – The Lancet’s disclosure policy at that time was followed to the letter. Documentary evidence confirms that the editorial staff
of The Lancet was fully aware that I was working as an expert on MMR litigation well in advance of the paper’s publication12.
did not have Ethics Committee (EC) approval5
False – The research element of the paper that required such an approval, detailed systematic analysis of children’s intestinal
biopsies, was covered by the necessary EC approval13.
I “fixed” data and misreported clinical findings14
False – There is absolutely no basis in fact for this claim and it has been exposed as false15.
findings have not been independently replicated12
False – The key findings of LNH and colitis in ASD children have been independently confirmed in 5 different countries16.
has been retracted by most of the authors17
False – 11 of 13 authors issued a retraction of the interpretation that MMR is a possible trigger for syndrome described. This
remains a possibility and a possibility cannot be retracted.
 the work is discredited18
False – Those attemping to discredit the work have relied upon the myths above. The findings described in the paper are novel and
important19.
39
The legacy of
The Lancet paper
The first demonstration of
intestinal pathology in ASD
GI symptoms are common in children
with autism, and these symptoms are
frequently associated with intestinal
inflammation.
Treatment of GI inflammation may
lead to symptomatic improvement in
both GI and behavioral symptoms21.
The first demonstration
of abnormal vitamin B12
metabolism in ASD
Now the subject of major clinical and
research activities in autism, ranging
from study of genetic differences in
B12/folate metabolism to treatment
with active forms of B12.
The first study to report
a re-challenge effect of a
measles containing vaccine
(MCV)
Follow up indicates that intestinal
inflammation is significantly worse
in re-challenge ASD children than
children receiving only one measlescontaining vaccine (MCV)22 .
First study to seek evidence
of a mitochondrial disorder
by measurement of lactate:
pyruvate in cerebrospinal
fluid
“Mito” disorders appear to be
common in ASD children and may
be acquired. The U.S. government
conceded that vaccines triggered
autism in Hannah Poling,
a child with “mito”
disorder24 .
40
THE AUTISM FILE | www.autismfile.com paper for what it was, what it did and didn’t
say, and to examine the legacy of the paper
in the light of subsequent events.
Study design
The Lancet paper – the first in a series
of related papers – is a case series: This
is stated explicitly in the first line of the
paper: “...a consecutive series of children
with chronic entero-colitis and regressive
developmental disorder”1. A typical
example of how basic epidemiological
textbooks define and describe a case series
is found in Hennekens and Buring3:
“Case series studies describe the
experience of a single patient or a group
of patients with a similar diagnosis.
These types of study, in which typically
an astute clinician identifies an unusual
feature of a disease or a patient’s
history, may lead to formulation of
a new hypothesis… At that time an
analytic study (most frequently using
a case-control approach), can [then]
be done to investigate possible causal
factors.” [emphasis added]
The crucial design feature which
differentiates the case series from other
designs is its lack of requirement to select
participants on the basis of either the
exposure (e.g., MMR) or the outcome of
interest (e.g., autism). A case series does
not require – and should not employ –
strict inclusion or exclusion criteria. Rather,
it should function to observe similar
presentations in groups of patients that
appear to share other common features in
order to raise hypotheses that later may
be tested in the appropriate study design
framework (e.g., a case-control study).
The Lancet paper does exactly what
is required of a case series. It states
immediately what the report sets out to
do: no particular developmental disorder
was stated, no particular features or timing
of onset were required, no particular
initial exposure was necessary, no specific
outcome was predicted, and no causal
association was claimed.
Of note, we have been criticized for
not having controls in the study; that
is, developmentally normal children
included for the purpose of comparison.
While controls are not usually part of a
case series, we went beyond what would
normally be required and did include
controls – 19 age-matched children (5 for
microscopic examination of tissues and 14
for measurement of urinary methylmalonic
acid [MMA]). This would have been
evident upon a proper reading of the
paper.
Finally, Hennekens and Buring3 make
the crucial point that the purpose
of a case series is to generate new
hypotheses about potential causation.
It is not designed to investigate possible
causality. The Lancet paper was hypothesis
generating; it stimulated a series of
subsequent papers – rarely if ever
acknowledged by critics – that confirmed
and characterized the bowel disease as
novel, relatively frequent, and potentially
treatable and tested ideas about
causation19. Among the critics there has
been some confusion on this point, which
is evident, for example, in a widely quoted
analysis of the paper by Professor Trisha
Greenhalgh20 that raises and attempts to
answer a series of questions, including:
Was the research hypothesis clearly
stated?
She observes, “The paper does not state
a research hypothesis at all.” This is quite
true. Case series studies are neither
required nor expected to do so. Having
established that there was no hypothesis,
Professor Greenhalgh goes on to pose the
ridiculous question:
ISSUE 33 2009
Was this design an appropriate way
to test the research hypothesis?
She concludes that the study design
was not an appropriate way to test “the
research hypothesis.” However, since she
has already identified the fact that no
hypothesis was stated, she rather begs
the question as to which hypothesis
the study was not designed to test.
It soon becomes clear that it was her
hypothesis that the study did not test.
Her conclusion that “the study design was
incapable of proving the [MMR] link one
way or the other” is, of course, entirely
accurate as we had already indicated in
the paper on page 641, paragraph 2, lines
1 and 21 :
“We did not prove an association
between measles, mumps and
rubella vaccine and the syndrome
described…”
and paragraph 5, lines 4-6:
Further investigations are needed
to examine this syndrome and its
possible relation to the vaccine.”
Professor Greenhalgh ventures even
further off course when she asks:
Were the study’s conclusions
supported by the data?
It is not clear whether Professor
Greenhalgh is referring to the authors’
conclusions – i.e., that the data do not
demonstrate a causal link between the
disorder and MMR exposure and that
further research is required, or whether
she is asking if the data support her
own hypothesis. In the former case, the
data clearly support our conclusions.
Not surprisingly, they do not support
Professor Greenhalgh’s hypothesis – that
MMR causes the syndrome described.
She continues:
If the answer to [the question above]
is “no,” would a more robust study
design have been practically possible
to test the study’s main hypothesis?
Having inserted her own hypothesis,
Professor Greenhalgh answers her
question with a resounding “yes.” That
she does appear satisfied, on the basis of
ISSUE 33 2009 what can only be described as a complete
misunderstanding of The Lancet study’s
design, is cause for concern. In turn,
the failure of the Department of Health
(whose Web site directed people via the
National Health Service Executive to
her analysis) to appreciate the potential
impact of this deeply flawed document
on the perceptions of many thousands of
worried parents is alarming.
Notwithstanding Professor
Greenhalgh’s follies, one should never
underestimate the importance of the
case series as a starting point for medical
discovery. It is the tried and tested mode
of the description of human disease
syndromes, including Kanner’s autism,
Asperger’s syndrome, and Heller’s disease
(disintegrative disorder). One final word
on the matter endorses this perspective:
“Clinical situations in which a case
report or case series is an appropriate
type of study include the following:
a doctor notices that two babies
born in his hospital have absent limbs
(phocomelia). Both mothers had
taken a new drug (thalidomide) in
early pregnancy. The doctor wishes
to alert his colleagues worldwide to
the possibility of drug related damage
as quickly as possible (McBride, in
The Lancet 1961). Anyone who thinks
‘quick and dirty’ case reports are
never scientifically justified should
remember this example.”
And the source of this invaluable piece
of advice? Dr. Trisha Greenhalgh, author
of “How to Read a Paper”24 .
“Coincidence”
Coincidence – often the first resort
of skeptical physicians – refers, in this
context, to the chance occurrence of
autistic symptoms being identified in
the second year of life, at around the
same time as MMR is given. Regularly
advanced as an explanation for the
parents’ story, coincidence is a conclusion
of last resort – one that should be
arrived at only after diagnostic due
diligence has excluded alternative
causes for neurological deterioration
in a child. Meticulous attention should
be paid to the parental history, and
Meticulous attention should
be paid to the parental
history, and the practice
of claiming coincidence
without first excluding
possible causes has no
place in clinical medicine.
the practice of claiming coincidence
without first excluding possible causes
has no place in clinical medicine. Where
an infection such as herpes simplex or
Epstein-Barr virus (mono) has preceded
autistic regression, the medical literature
shows that extensive testing has been
undertaken, the cause identified, and the
child treated accordingly25. In contrast,
when MMR vaccination has preceded
autistic regression, little, if any, attempt
has been made to investigate children
appropriately. The case of Bailey Banks
is one of those rare instances where
this has been done and for whom the
United States vaccine court ruled that
MMR caused his ASD26 . Bailey’s MRI,
performed 16 days post-MMR for
encephalopathy, revealed abnormalities
of brain myelin consistent with acute
disseminated encephalomyelitis (ADEM),
an autoimmune brain inflammation that
can follow measles or a measles vaccine.
The lesson is that every attempt should
be made to evaluate children during the
course of their regression since, as in the
case of ADEM, abnormalities of brain
myelin may be transient and not evident
on an MRI performed two years after
exposure. The fact that the parents of
The Lancet children described loss of
fecal and/or urinary continence in four
cases and ataxia (clumsiness) in six – the
latter being a reported adverse reaction
to MMR vaccine 27 – is more than enough
indication for thorough neurological
workup. The history of regression with
loss of acquired skills in a previously
normal or near-normal child should ring
alarm bells and initiate a systematic
approach to differential diagnosis. It
was with this in mind that Professor
Walker-Smith, one of the world’s leading
pediatric gastroenterologists and senior
author of The Lancet paper, wrote in
1997:
41
Re-challenge with
a measles vaccine
Child RT* was monitored closely in his
first year due to wide bridging of his
nose. He was discharged from follow
up as developmentally and physically
normal by 15 months of age. He later
received a single measles vaccine
following which he stopped “cruising”
around furniture and regressed to
crawling. His learning plateaued and,
by 20 months, he had lost words;
soon thereafter, he stopped talking
altogether. General ill health developed
in his second year with ear, chest,
and throat infections, and diarrhea
with abdominal pain. According to his
mother’s story, two weeks after an
MMR vaccine, at 4.5 years of age, he
“disappeared” and “lost all skills and
communication.” While at 10 months of
age he had been able to build a tower
of bricks, his play skills declined to the
point that, “now he [was] lost as to
what to do with them.” In addition, he
became clumsy, started head banging,
and developed repetitive behaviors.
He lost his self-help skills; for example,
before the MMR booster he could feed
himself with a spoon, afterwards he
could no longer even hold a cup.
The history of Child RT’s GI problems
is also instructive. His records state:
“The diarrhoea became a problem at
between 1-1½ years of age [after his
single measles vaccine]…it generally
contains undigested food. His diarrhea
became significantly worse from 4½
years of age [after his MMR]...”
Failure to thrive, a cardinal sign of
pediatric inflammatory bowel disease,
was evident from the GP’s records;
he was reported to be “dropping off
centile charts.” This failure to thrive
continued and took another downturn
at the same time that his diarrhea
worsened, when he was noted to
have dropped from the 9th to the 2nd
centile for weight.
Further examination of MMR rechallenge is currently under way.
*Initials have been changed.
42
THE AUTISM FILE | www.autismfile.com Did they read the paper?
Ari Brown, MD
Spokesperson for the American Academy of Pediatrics and the Immunization
Action Coalition
“This flawed study concluded that the rise in autism was related to giving the
combination vaccine of measles-mumps-rubella (MMR).”31
Professor Sir Michael Rutter, FRS
Expert prosecution witness GMC, expert witness on behalf of MMR vaccine
manufacturers
“Publication of a study claiming a casual relationship between measles, mumps
and rubella (MMR) vaccine and autism spectrum disorders (ASD) sparked a
heated debate...”32
Professor Eric Fombonne
Expert witness on behalf of MMR vaccine manufacturers
”Recent reports claim to have identified another variant of autism (called
‘autistic enterocolitis’) in children referred to a gastroenterology department. The
hypothesis has involved 3 separate claims: 1) that a new phenotype of autism
associated with developmental regression and gastro-intestinal symptoms has
emerged as a consequence of measles-mumps-rubella vaccination...”33
“[These children] have not had the
level of investigation which we would
regard as adequate for a child
presenting with such a devastating
condition.”28
Despite evident neurological symptoms,
despite the proximity of onset to a viral
exposure, and despite additional physical
symptoms such as pain and diarrhea, a
diagnosis of autism trumped the need
for anything but minimal investigation by
“mainstream” autism practitioners for the
majority of these children.
Coincidence and re-challenge
Where a child with regressive autism
has received more than one dose of
a measles-containing vaccine (MCV),
exacerbation of existing symptoms and/
or recurrence of transient symptoms
associated with the first dose is frequently
reported. Properly documented, the
Institute of Medicine’s Vaccine Safety
Committee accepts the “re-challenge”
effect as evidence of causation29. In
order to examine this in the setting of
MMR and autistic enterocolitis and to
overcome the concern about parental
recall of events that may have occurred
many years before, we conducted a study
comparing the severity of intestinal
inflammation between children oncevaccinated and those twice-vaccinated
with an MCV. Our hypothesis was that the
disease should be more severe in those
exposed twice if the disease were caused
by the vaccine22 . There was a significantly
higher prevalence of active chronic colitis
Despite evident neurological symptoms, despite the
proximity of onset to a viral exposure, and despite
additional physical symptoms such as pain and diarrhea,
a diagnosis of autism trumped the need for anything but
minimal investigation by “mainstream” autism practitioners
for the majority of these children.
ISSUE 33 2009
(involving pus-forming cells) in those
children given an MMR or MR booster
compared with those receiving only one
dose, supporting a causal association. This
apparent re-challenge effect is currently
being examined in a large population
of U.S. children to see if the finding is
reproducible.
Diligent science
The quest for precision can become a
hostage to fortune, as the microscopic
analysis of The Lancet children’s tissues
was to prove. There are few people in
the world with Professor Walker-Smith’s
knowledge of the microscopic appearances
of inflammatory disease of the intestine in
children. So it was that, in the absence of
a pediatric pathologist expert in this field
at the Royal Free, Professor Walker-Smith
conducted a weekly review of his patients’
tissues and identified the fact that disease
was being missed in some children. In
order to reduce this risk and to standardize
the reporting of the ASD children’s
biopsies, all tissues were subsequently
examined by a single senior pathologist
with expertise in bowel disease. His
findings were recorded on a specially
designed chart to document specific
features of tissue damage30. This record
formed the basis of what was subsequently
reported in The Lancet. Few case-series go
to this level of precision.
In the hands of someone determined to
discredit the work, however, discrepancies
between the routine clinical report (which
may have come, for example, from a
pathologist with an interest in brain disease
or gynecological pathology) and the
standardized expert analysis were falsely
reported in the national media as “fixing”
of the data. I was specifically accused of
this31, although I had no part in scoring the
reviews. It is notable that despite five years
of investigation by the GMC no charge
of scientific fraud has been made against
any of the defendants. The allegation of
fraud was made by Brian Deer, the same
freelancer who had initiated the GMC
enquiry, continuing his litany of false
allegations. There is no evidence at all that
the data had been “fixed” as was alleged,
and the newspaper in question has failed
to produce any, despite a request to do so
from the Press Complaints Commission.
ISSUE 33 2009 The damage done to my reputation and to that of my
colleagues as well as the personal price for pursuing a
valid scientific question while putting the patients’ interests
above all others is trivial compared with the impact of these
falsehoods on the children’s access to appropriate and
necessary care.
Paradoxically, the price paid for diligent
science has been a headline proclaiming
fraud. No doubt the intended goal – to
reinforce the false belief that the work is
discredited – has worked for some.
The damage done
The damage done to my reputation
and to that of my colleagues as well
as the personal price for pursuing a
valid scientific question while putting
the patients’ interests above all others
is trivial compared with the impact
of these falsehoods on the children’s
access to appropriate and necessary
care. My experience is intended as a
cynical example to discourage others. As
a consequence, many physicians in the
United Kingdom and United States will
not risk providing the care that is due to
these children. There is a pervasive and
openly stated bias against funding and
publication of this work, and I have been
excluded from presenting at meetings
on the instructions of the sponsoring
pharmaceutical company. It has been an
effective exercise in public relations and
selling newspapers. But it will fail – it will
fail because nature cannot be deceived.
It has always been a privilege working
with these children and their families. It
is my hope that before too long the tide
will turn and that, in addition, my teacher
and mentor Professor Sir Stanley Peart,
FRS, will come to realize that I have never
forsaken his instruction.
In the next edition of The Autism File,
Dr. Wakefield will continue his analysis of
“That Paper” and its legacy.
43
References
Wakefield, A. et al., Ileal lymphoid nodular hyperplasia, nonspecific colitis and pervasive developmental disorder in children.
The Lancet 1998;351:637-641.
1
Gonzalez L., Gastrointestinal Pathology in Autism Spectrum
Disorders: the Venezuelan Experience. The Autism File.
2009;32:34-37.
2
Hennekens C., Buring, J. (1987) Epidemiology in Medicine.
Mayrent, S.L (Ed.), Lippincott, Williams and Wilkins.
3
Allegation by Brian Deer to The Lancet Editor Richard Horton,
February 2004 and January 2008. General Certificate of School
Education (GCSE) Biology exam (higher tier). Assessment and
Qualifications Alliance. http://www.aqa.org.uk/ (home page).
See also: http://www.ageofautism.com/2009/06/poisoningyoung-minds.html
4
5
Sunday Times. February 2004.
Correspondence between Dr. Wakefield and Professor WalkerSmith, February 3, 1997 and February 20, 1997.
6
Correspondence between Dr. Wakefield and Professor AJ
Zuckerman, March 24, 1997.
7
8
‘“A shot in the dark.” The Independent, 27 1997 .
9
Statement of Walker-Smith J. The Lancet 2004;363:822-823.
10
Sunday Times. February 2004 and January 2008. General
Certificate of School Education (GCSE) Biology exam (higher
tier). Assessment and Qualifications Alliance. http://www.
aqa.org.uk/ (home page). See also http://www.ageofautism.
com/2009/06/poisoning-young-minds.html
11
Sunday Times. February 2004. Also, Horton R., The Lancet
2004;363:820-821.
12
Moody J., Complaint to GMC vs Horton R., Zuckerman A.,
Pegg M.,and Salisbury D. (pending).
13
Ethical Practices Committee approval 162/95. Date of
approval September 5, 1995. Carroll, M. to Walker-Smith, J.
14
Sunday Times. February 22, 2009.
Complaint to Press Complaints Commission. Wakefield vs Deer
and the Sunday Times. (see www.cryshame.org).
15
In addition to the UK: Gonzalez, L., et al., Endoscopic and
Histological Characteristics of the Digestive Mucosa in Autistic
Children with gastro-Intestinal Symptoms. Arch Venez Pueric
Pediatr, 2005;69:19-25. And Balzola, F., et al., Panenteric
IBD-like disease in a patient with regressive autism shown for
the first time by wireless capsule enteroscopy: Another piece
in the jig-saw of the gut-brain syndrome? American Journal of
Gastroenterology, 2005. 100(4): p. 979-981. And Krigsman,
A., et al., http://www.cevs.ucdavis.edu/Cofred/Public/Aca/
Web Sec.cfm?confid=238&webid=1245 (last accessed June
2007) (paper submitted for publication) And Balzola, F., et
al., Autistic enterocolitis: Confirmation of a new inflammatory
bowel disease in an Italian cohort of patients. Gastroenterology
2005;128(Suppl. 2);A-303. And Galiatsatos, P., et al.,
Autistic enterocolitis: Fact or fiction. Canadian Journal of
Gastroenterology. 2009;23:95-98.
16
17
Evidence of Horton R., to the General Medical Council;
statement of Horton R., The Lancet 2004;363:820-821.
18
http://briandeer.com/mmr/lancet-retraction.htm
Horvath K., et al., High prevalence of gastrointestinal
symptoms in children with autistic spectrum disorder (ASD). J
Pediatr Gastroenterol Nutr 2000, 31:S174. And Melmed, R., et
al., Metabolic markers and gastrointestinal symptoms in children
with autism and related disorders. J Pediatr Gastroenterol Nutr
2000, 31:S31–S32. And Horvath, K. and Perman, J., Autistic
disorder and gastrointestinal disease. Current Opinion in
Pediatrics 2002, 14:583–587. And Furlano, R., et al., Quantitative
immunohistochemistry shows colonic epithelial pathology
and γδ-T cell infiltration in autistic enterocolitis. J Pediatrics
2001;138:366-372. And Torrente, F., et al., Enteropathy with T
cell infiltration and epithelial IgG deposition in autism. Molecular
Psychiatry. 2002;7:375-382. And Torrente, F. et al., Focalenhanced gastritis in regressive autism with features distinct from
Crohn’s and helicobacter pylori gastritis. Am. J. Gastroenterol.
2004;4:598-605. And Ashwood, P. et al., Intestinal lymphocyte
populations in children with regressive autism: Evidence
for extensive mucosal immunopathology. J. Clin. Immunol.
2003;23:504-517. And Ashwood. P., et al., Spontaneous mucosal
lymphocyte cytokine profiles in children with regressive autism
and gastrointestinal symptoms: Mucosal immune activation and
reduced counter regulatory interleukin-10. Journal of Clinical
Immunology. 2004:24:664-673. And Wakefield, A., Enterocolonic encephalopathy, autism and opioid receptor ligands.
Alimentary Pharmacology & Therapeutics. 2002;16:663-674.
And Uhlmann, V., et al., Potential viral pathogenic mechanism
for new variant inflammatory bowel disease. Molecular Pathology
2002;55:84-90. And Sabra. A., et al., Ileal-lymphoid-nodular
hyperplasia, non-specific colitis and pervasive developmental
disorder in children. The Lancet, 1998;352:234-235. And Sabra,
A., et al., Linkage of ileal-lymphoid-nodular hyperplasia (ILNH),
food allergy and CNS developmental: evidence for a non-IgE
association. Ann Allergy Asthma Immunol, 1999;82:8. And
Valicenti-McDermott M., et al., Frequency of gastrointestinal
symptoms in children with autistic spectrum disorders and
association with family history of autoimmune disease.
Developmental and Behavioral Pediatrics. 2006;27:128-136.
And Richler, J., Luyster, R., Risi, S., Hsu, Wan-Ling, Dawson, G.,
Bernier, R., et al., Is there a ‘regressive phenotype’ of autistic
spectrum disorder associated with the measles-mumps-rubella
vaccine? A CPEA study. Autism Dev. Dis. 2006, 36:299-316. And
Sandler, R., Short-term benefit from oral vancomycin treatment
of regressive-onset autism. J. Child Neurol. 2000;15:429-435.
And Parracho, H., Differences between the gut flora of children
with autistic spectrum disorders and that of healthy children.
Journal of Medical Microbiology. 2005;54:987-991.
19
20
Greenhalgh T., A critical appraisal of the Wakefield, et al.,
paper. http://briandeer.com/mmr/lancet-greenhalgh .htm
Walker-Smith J., et al., Ileo-caecal lymphoid nodular
hyperplasia, ileo-colitis with regressive behavioural
disorder and food intolerance: a case study. J. Paediatric
gastroenterology and Nutrition. 1997;25:Suppl 48:A31
And Balzola. F., et al., Beneficial behavioural effects of IBD
therapy and gluten/casein-free diet in an Italian cohort of
patients with autistic enterocolitis followed over one year.
Gastroenterology:2008;4:S1364.
21
22
Wakefield, A., Gastrointestinal co-morbidity, autistic regression and measles-containing vaccines: positive re-challenge and
biological gradient effects. Medical Veritas 2006;3:796-802.
23
Poling, J. and Poling, T., Vaccines, autism and our daughter
Hannah. The New York Times. 2008 . And Poling, J., et al.,
Developmental regression and mitochondrial dysfunction in
a child with autism. J Child Neurol, 2006; 21(2):170–2. And
Oliveira, G., et al., Epidemiology of autism spectrum disorder
in Portugal: Prevalence, clinical characterization, and medical
conditions. Dev Med Child Neurol, 2007; 49(10):726–33. And
Reuters, Mitochondrial dysfunction, vaccines and autism: 1 in
50 children at risk. Press Release 2008 [cited January 11, 2009].
Available online at http://www.reuters.com/article/pressRelease/idUS188644+28-Mar-2008+PRN 20080328. And Kirby,
D., The next big autism bomb [Web newsletter] 2008 [cited
January 6, 2009] Available online at http://www.huffingtonpost.com/david-kirby/the-next-big-autism-bombb93627.
html?show+comment_id= 12157235. And Elliot, H., et al.,
Pathogenic mitochondrial DNA mutations are common in the
general population. Am J Human Genetics 2008;83:254–60. And
Filipek, P., et al., Mitochondrial dysfunction in autistic patients
with 15q inverted duplication. Ann Neurol, 2003; 53: 801–4.
24
Greenhalgh, T. How to Read a Paper. BMJ 2001;326:106-106.
DeLong, R., et al., Acquired reversible autistic syndrome in
acute encephalopathic illness in children. Child Neurology.
1981;38:191-194. And Gillberg. C., Brief report: onset at age
14 of a typical autistic syndrome. A case report of a girl with
herpes simplex encephalitis. J. Aut. Dev. Dis. 1986;16:369-375.
And Shenoy, S., et al., Response to steroid therapy in autism
secondary to autoimmune lympho-proliferative syndrome J.
Pediatrics 2000;136:682-687.
25
26
Health and Human Services vs Bailey Banks. http://www.
ageofautism.com/2009/02/why-is-the-media-ignoring-thebailey-banks-autism-vaccine-decision.html
27
Plesner, A., Gait disturbance after measles mumps rubella
vaccine. The Lancet 1995;345:316. And Plesner A., et al.,
Gait disturbance interpreted as cerebellar ataxia after MMR
vaccination at 15 months of age: a follow-up study. Acta
Paediatrica 2000;89:58-63.
28
Correspondence: Walker-Smith, J.A. to Pegg, M. (Chairman
Ethical Practices Committee). November 11, 1996.
29
Stratton, K., et al., Adverse Events Associated with Childhood
Vaccines: Evidence Bearing on Causality. 1994: National
Academies Press.
30
Wakefield, A., Enterocolitis in children with developmental
disorder. American Journal of Gastroenterology 2000;95:22852295. And Wakefield, A., Autistic enterocolitis: Is it a histological
entity? Histopathology 2006;50:380-384.
31
Complaint against Brian Deer and the Sunday Times to Press
Complaints Commission (see www.cryshame.org)
32
Deer, B. , “MMR doctor Andrew Wakefield fixed data on
autism,” Sunday Times. February 8, 2009
33
Brown, A. & Fields D. Baby 411. Windsor Peak Press, Boulder,
CO. 2004;12:245
Acknowledgements: My enormous gratitude is due to Dr. Carol Stott,
PhD, and to readers of The Autism File for their stoic support.
Never Lose Anything Again
Loc8tor helps keep track of your kids, pets, TV remote,
keys and other valuables.
The handset guides you which way to walk to within
1 inch of your lost child / item and lets you set an
invisible boundary warning if they’ve strayed too far.
• Locates – Can find anything.
“I have a 6 year old Autistic child. He will go off
• Alerts – Warns if a child wanders
without any regard for his safety … the Loc8tor
• Multi Award Winning – Voted best product
gives me peace of mind - if my attention is
• No monthly subscriptions
diverted, even for a second, I will be alerted …
• Designed for use with afflictions such as Autism
I will know which direction … every second counts.”
10% of sales go to the Autism Trust
Use promo code AT1 when ordering
$169.99
Pete - New Forest
Call 1888 539 4669 to order or visit www.loc8tor.com
44
We responded to your requests and developed a special
formulation to better meet your specific needs.
INTRODUCING SYNDION-SF
Syndion® is an antioxidant multivitamin & mineral
supplement formulated for children and adults
with special nutritional needs and food sensitivities
A pilot study indicates beneficial effects on the Parental Impressions Scale in Speech/
Language Comprehension, Sociability, Sensory/Cognitive Awareness, and Health/Physical
Behaviors. In addition, there were beneficial effects reported in sleep questionnaire results1
Supports normal plasma levels and urinary excretion of
heavy metals1*
Contains important vitamins and
antioxidants that support normal
methylation, sulfation, and
detoxification pathways*
Safely and effectively
increases levels of fatsoluble nutrients and antioxidants
through microsphere technology1*
Microsphere technology forms
micellar structures that aid in vitamin
and micronutrient absorption
Sign up today to receive discounts
and more information at
www.syndion.com
or call 1-877-SYNDION (1-877-796-3466)
Optimized Nutritional Support
Now available in regular and sucralose free formulations.
*These statements have not been evaluated by the Food and Drug Administration.
This product is not intended to diagnose, treat, cure, or prevent any disease.
Reference 1: Data on file, Yasoo Health Inc.
Yasoo Health develops innovative, research-based products consisting of essential
nutrients and natural compounds to help overcome malabsorption and reduce
oxidative stress and inflammation in chronic diseases.
45
A brief story of our daughter
Michelle’s vaccine injury and
subsequent landmark court case
By Theresa Cedillo, August 3, 2009
I
close my eyes, and it seems like
yesterday that I can see my beloved and
blessed little baby girl Michelle so full of
life, good health, and with such a beautiful
spirit. I open my eyes, and before me is
my 14-year-old daughter, so broken with
Michelle at 3 months old, very normal.
Dad with Michelle in 1995 at 8 months old,
pre-MMR. She is so alert and engaged in
her surroundings.
46
THE AUTISM FILE | www.autismfile.com 1995: One month before the MMR shot illness now and in such physical pain, but
the beautiful spirit remains so strong.
In a seven-day period, Michelle’s life,
and ours, changed forever. On December
20, 1995, she received the measles,
mumps, and rubella (MMR) vaccination.
On December 27, 1995, she came down
with a fever. That fever marked the
beginning of a profound and dramatic
decline in Michelle’s health. Up until the
age of 15 months, Michelle was a normal
and healthy child. She talked, played,
laughed, socialized, and ate normally. At
the age of 14 years, she is now under the
care of seven pediatric specialists, uses a
feeding tube for nutrition and medication,
and has been formerly diagnosed by
pediatric specialists with the following:
moderate-severe autism, Crohn’s disease,
arthritis, spondyloarthritis, osteoporosis,
uveitis, open angle glaucoma, and
intractable grand mal epilepsy. In
addition, Michelle is legally blind in her
right eye, does not speak, although
she communicates with hand motions
and tapping (on whatever is nearby). In
addition, she hits herself when in pain or
when frustrated. Just recently after she
spent five days in a children’s hospital,
her pediatric neurologist told us that her
seizures are life threatening. Michelle is
now at a high risk for SUDEP—sudden
unexplained death in epilepsy. We monitor
her 24 hours a day.
Sadly, the story of Michelle’s period
of normal development followed by
regression and then a diagnosis of autism
is not unique. Parents from all over the
United States, the United Kingdom,
Spain, Mexico, and many other countries
share a remarkably similar story of normal
development followed by regression and
co-existing biological medical problems.
In 1997, after Michelle was diagnosed
with autism, I began researching online
and talking to other parents by telephone.
I soon became aware of Dr. Andrew
Wakefield’s studies involving regression,
autism, gastrointestinal disease, and the
MMR. His studies, research by other
scientists, and advice from parents started
us on a journey to find out what had
happened to Michelle and how to bring
her back. We wanted to treat whatever
had happened to her. We wanted her to
be healthy again. Sadly, Michelle has not
Parents from all over the United States, the United Kingdom,
Spain, Mexico, and many other countries share a remarkably
similar story of normal development followed by regression and
co-existing biological medical problems.
ISSUE 33 2009
Young Michelle: “before” (approx. 8 months old) and “after” (approx. 26 months old)
regained her health. We have taken her
all over the United States—Long Island,
Austin, Los Angeles, San Diego, Phoenix,
and Tucson—in our efforts to diagnose
and treat her medical problems. We are
faced with the harsh reality that her
medical condition continues to worsen as
she ages.
In 1998, we filed with the National
Vaccine Injury Compensation Program,
a program created by the United States
Congress as an alternative to the
traditional tort system. The purpose is to
resolve vaccine injury claims and provide
compensation to people found to be
injured by certain vaccines.
But it was not until nearly nine years
later that Michelle’s case was heard.
Between the time we filed and her hearing,
more than 5,000 claims were filed for
vaccine injury and autism. To better process
these claims, the United States Court
of Federal Claims formed the Omnibus
Autism Proceeding on July 3, 2002. In
early 2007, Michelle’s attorneys at Conway,
Homer, Chin-Caplan informed us that
Michelle’s case had been chosen to be the
first test case under the Omnibus Autism
Proceeding in the U.S. Court of Federal
Claims. The hearing was to take place in
Washington D.C. My family and I were
extremely honored that Michelle’s case was
chosen to represent the many similar cases
in the Omnibus.
ISSUE 33 2009 We live in Arizona, clear across the
country from Washington, D.C. It took us
nearly a month to plan, pack, and ship
everything we would need for the 3-week
stay in Washington. Arrangements had
to be made for a hospital bed, a feeding
pump, oxygen (for seizures), a registered
nurse to administer Humira injections
while I attended the hearing, the enteral
formula, and a wheelchair. In addition,
it took the creativity of our entire family
to devise a setting where Michelle would
be comfortable, so she would not want
to leave immediately to come home! In
between planning the trip, when not busy
with Michelle’s daily care, my days were
consumed with preparing for her case to
be heard. Michelle’s medical history to that
point consisted of thousands of pages of
documents. Some days I spent an entire
day looking for one document or reviewing
a certain time period in preparation for the
hearing.
I must have done a mental walk through
of the airport and flying with Michelle
100 times. We had flown when Michelle
was younger to New York, but she was
older now, and I did not know how she
would handle the noisy, congested airport
and flight. We drove three hours to the
Phoenix airport and boarded the plane to
Washington, D.C. Michelle did not sleep
the night before and was exhausted by
the time the plane took off. She slept
Age 5 or 6 years old in San Diego, California. most of the flight. When we landed, we
found transportation and began our drive
to the hotel. My very first phone call
in Washington came from a reporter at
the Washington Post. Being on a tight
deadline, he interviewed me on the phone
with Michelle sitting next to me in the
back of a taxi as we made our way through
the historic city.
That night Michelle’s attorney Kevin
Conway, my husband, and I did an
interview with the Associated Press. Over
the weekend, People magazine came to
the hotel to photograph Michelle for an
article that would appear a few weeks later.
Although the autism/vaccine injury
theory had become very controversial,
Michelle and my family were treated with
respect by those who interviewed us.
They showed concern for her and were
interested in listening to how she had
become so sick and what the hearing
would be about.
On June 11, 2007, the hearing began.
For two and a half weeks, Michelle, her
father, grandfather, aunts, uncle, and I
attended the hearing.
The first week was the petitioner’s
(Michelle’s) week. We presented our
theory and our medical evidence with
six expert witnesses along with my oral
testimony. We were all cross-examined
by the U.S. Department of Health and
Human Services (respondent) attorneys.
47
Our focus must always remain on the children who have been
injured (some are adults now) and the quest for their help.
September 26, 2003: Michelle, 9 years old, sleeping on the plane ride back from Long Island, NY,
where we took her to see Dr. Arthur Krigsman. She was recovering from a 3-week hospital admission
and was still quite ill during this time.
The very first day of the hearing, oral
testimony began with Dr. Vasken Aposhian,
an environmental toxicologist, who is a
professor of molecular and cellular biology
as well as professor of pharmacology at the
University of Arizona. Next, I was sworn in
and began my testimony in the afternoon.
My testimony took us through the end
of the day. The next morning, I resumed
testifying and continued until the lunch
break. Dr. Arthur Krigsman, a pediatric
gastroenterologist, followed my testimony
in the afternoon.
Speaking only from a mom’s perspective,
it was quite an experience to testify under
oath and to be cross-examined about that
testimony. I was nervous at the beginning,
but once I began answering questions
about Michelle, her decline in health, and
what she has endured, it really all became
about telling her story. It’s what her life
and our family’s has been all about for
the past 12 years. As I testified, I lost my
nervousness, and it was replaced with
a sense of justice at finally having legal
documentation of what had taken place in
her life. I felt the strength of every other
parent I had ever talked to or e-mailed
who had a story similar to my daughter’s.
48
THE AUTISM FILE | www.autismfile.com Although I was telling Michelle’s story, I
felt as though I was speaking on behalf
of all the other injured children (at least
partially).
The rest of the week continued with
Dr. Karin Hepner, Dr. Ron Kennedy, Dr.
Vera Byers and Dr. Marcel Kinsbourne, all
testifying on behalf of Michelle.
The second week and into the beginning
of the third week, the respondent used 17
expert witnesses, 10 of whom gave oral
testimony, to testify against Michelle’s case
and our theory of vaccine injury.
The hearing concluded on June 26th,
with closing statements by both sides.
Over the next few days we packed our
things and took the long flight back home.
We settled back into our normal routine
and tried to keep talk of a decision to a
minimum. We knew there was not a set
date, and there was no way to tell how
long the court would take to make a
determination.
As the months passed, Michelle’s
medical conditions showed signs
worsening. Her gastrointestinal disease
began giving her problems, and her eye
disease required frequent exams with
specialists. Then, Michelle was diagnosed
July 25, 2003: Michelle is very sick and would
be hospitalized the next day. She was severely
malnourished and clinically anorexic. She was
already having eye problems, was unable to eat,
and had nearly stopped taking in fluids. This is
when she had to get the feeding tube placed.
The reasons that Michelle’s legs are bruised in
this picture are: 1) she was hitting herself from
pain; and 2) she had developed a coagulation
disorder secondary to malnutrition from vitamin K
deficiency.
and began treatment for osteoporosis as
well as chronic pain syndrome. In addition,
we began to see a slow increase in seizure
activity.
On February 11, 2009, nearly 20 months
after the completion of Michelle’s hearing,
I received a call from her attorney. We
were at the hospital, and Michelle was
undergoing a procedure to check her small
bowel. I was told that the decision was
going to be released the next day. Early
the next morning, we received word that
Michelle, along with the Hazelhurst and
Snyder families, had lost her case.
I had waited so long for a decision that
it was relief to finally know, but this was
not the decision we had hoped for. With so
many medical costs and intensive care in
Michelle’s future, we had hoped for some
degree of compensation to help cover
these costs.
I felt then, as I do now, that we
presented a strong and solid case. I also
knew that this would be only the first step
of many in this long legal process. The
following month Michelle’s attorneys filed
an appellate brief.
July 7, 2009, oral arguments were
presented in Washington D.C. by Kevin
ISSUE 33 2009
Michelle in the hospital June 2004 getting an IV infusion of Remicade as treatment for
inflammatory bowel disease.
We never give up, we defy odds, we keep searching for answers,
and we keep fighting for the justice so deserved in this tragedy.
Conway on Michelle’s behalf, for her
appeal.
At the time that I am writing this, no date
has yet been given for a decision on the
appeal.
We have come such a long way, with
likely an equally long way ahead of us. The
continuing legal fight will not be an easy
one. We stand strong in the knowledge of
the factual evidence, along with increasing
new research in our favor. Our focus must
always remain on the children who have
been injured (some are adults now) and the
quest for their help. It is unfortunate that
in this medical controversy, the children
sometimes gets lost. Those injured must
always remain the focus on all levels and by
every individual involved.
I am proud to be part of an international
community of parents who have banded
together with very minimal resources for the
sake of our injured and suffering children. I
don’t think there has been or ever will be a
group of parents and families quite like ours
ever again. We never give up, we defy odds,
we keep searching for answers, and we keep
fighting for the justice so deserved in this
tragedy. God bless each and every one of us
as we continue on.
ISSUE 33 2009 Coda: the
injustice
continues
By Kevin Conway, Esquire
V
accines are an integral part of
our nation’s health policy. For
this reason, federal law forbids
lawsuits against vaccine manufacturers
until claims are processed in the federal
Vaccine Injury Compensation Program
(VICP). When Congress established
the Program in 1988, it intended to
discourage civil lawsuits by creating
a far better alternative. The Program,
Congress hoped, would discourage
lawsuits by providing vaccineinjured persons with quick, informal,
and generous resolutions of their
claims.
In many ways, the VICP has worked.
Persons have received compensation
for optic neuritis, acute-disseminated
Above right, top two photos: Summer 2009,
Michelle in her room.
Bottom two photos: June 2009, when
Michelle was admitted to the Pediatric
Epilepsy Monitoring Unit. This is why her
head is wrapped and she has an IV line in her
hand. You will notice that Michelle had gained
a large amount of weight. This is due primarily
to some of the medications she has taken in
the past and also the anti-seizure medication
she currently takes in very high doses.
49
encephalomyelitis (ADEM), multiple
sclerosis, transverse myelitis, GuillainBarré syndrome, chronic inflammatory
demyelinating polyneuropathy (CIDP),
intractable seizures, death, and
scarring. They have been compensated
for vaccine-induced brain injuries,
such as attention deficit disorder,
encephalopathy, learning disabilities,
and behavioral problems. They
have been compensated for mental
retardation in a child who became
autistic, for ADEM and resulting
Pervasive Developmental Disorder-Not
Otherwise Specified (PDD-NOS), and
for autistic-like symptoms in a child with
an underlying mitochondrial disorder.
When she filed her claim in the
Vaccine Injury Compensation Program
on December 9, 1998, Michelle Cedillo
was 4 years old. She said that vaccines
caused her to suffer brain damage and
autism. Her medical records showed she
was healthy until the age of 15 months,
received vaccines, had high fevers, and
was never again the same healthy girl.
Her doctors associated the change with
the vaccines. The Secretary of Health
and Human Services, however, disputed
her claim.
In a typical VICP case, each side
presents the expert testimony of
a single expert. A special master
then decides the case. In Michelle’s
case, however, the government used
seventeen experts to refute her claim.
Why? Because she claimed vaccines
caused her autism. Unfortunately for
Michelle, this was a problem. By the
time her case went to hearing in 2007,
it was clear that many vaccines had
contained a toxic substance (mercury)
during a time when the number of cases
of autism had exploded. Due to the
extraordinary publicity this issue had
received, officials feared parents would
refuse to immunize their children, that
immunization rates would fall, and that
preventable diseases would return.
In a typical VICP case, each side presents the expert
testimony of a single expert. A special master then decides
the case. In Michelle’s case, however, the government used
seventeen experts to refute her claim.
So, Michelle’s highly visible and widely
publicized claim had to be soundly
defeated. In an extraordinary 174-page
decision, the special master rejected her
claim.
In her appeal, Michelle said that
she had submitted sufficient evidence
that her vaccines had harmed her. She
claimed the special master purposely
turned a blind eye on her evidence,
especially the substantial concessions by
the respondent’s own expert witnesses.
She claimed the special master had
abandoned his obligation to impartially
weigh the evidence. She argued that
the special master had inappropriately
assumed the government’s role as
Due to the extraordinary publicity this issue had received,
officials feared parents would refuse to immunize their
children, that immunization rates would fall, and that
preventable diseases would return.
50
THE AUTISM FILE | www.autismfile.com protector of the integrity of vaccines.
She argued she had been denied
fundamental fairness. On August 6,
2009, the U.S. Court of Federal Claims
denied Michelle’s request to overturn
the special master’s decision. The
appeals of the Hazlehurst and Snyder
families were also quickly rejected.
Michelle has options. She has
until October 6, 2009 to appeal her
case to the Federal Circuit Court of
Appeals. She can leave the Vaccine
Injury Compensation Program and
file a civil action against the vaccine
manufacturers. She can simply give up
and accept the fact that the system has
failed her. But no matter what, Michelle
has inspired a generation of families
with autistic children to carry on the
fight – a fight that was never about
“compensation.” It was about finding
how these children were lost – and
about finding a way to bring them home
again.
ISSUE 33 2009
Subscribe to
US$32.99
For 6 Issues
l US$32.99 for 6 issues l Can$39.99 for 6 issues
l Get your issue home-delivered
There are several easy ways you can subscribe to The Autism File: go online, email, telephone, fax or post.
Complete the online form at www.autismfile.com. All information is sent securely and is encrypted for your protection.
For payment, we accept checks, money orders, Visa and MasterCard Email: expsmag@expressmag.com Web: www.expressmag.com
Our address is Canada Express Mag 8155 Larrey Street; Anjou, Quebec, H1J 2L5
Telephone Canada: Montreal and area: (514) 355-3334 Outside the Montreal Metropolitan area: 1 877 363-1310 Fax Canada: (514) 355-3332
Our address is United States Express Mag P.O. Box 2769 Plattsburgh, New York 12901-0239
Telephone United States Toll-free: 1 877 363-1310 Fax United States: (514) 355-3332
SUBSCRIPTION FOR THE AUTISM FILE USA
PAYMENT DETAILS
YOUR DETAILS
Title: Mr/Mrs/Ms/Other......................
Name...................................................................................................
Please debit my: Visa / Mastercard
Card Number
Start Date
/
Expiry Date
/
Address.................................................................................................
............................................................................................................
3 Digit Security Code
.............................................................................................................
Signature.......................................................................................................
............................................................................................................
ZIP.......................................................................................................
Tel........................................................................................................
Email....................................................................................................
Date.........................................................
I enclose a check for US $
Account name/payee The Autism File USA
Can $
Please tick box if you do not want to receive information
from third party suppliers or services.
PLEASE SEND TO
US Resident 6 Issues US$32.99
Canadian Resident 6 Issues Can$39.99
Canada Express Mag
8155 Larrey Street; Anjou, Quebec, H1J 2L5
I wish to start my subscription with:
or
United States Express Mag
P.O. Box 2769 Plattsburgh, New York 12901-0239
current issue Issue 33
ISSUE 33 2009 next issue Issue 34
Ref Code: USAFP33
51
IN MEMORIAM
By Stephen M. Edelson, PhD
The autism community lost one of its giants in June due to a
tragic car accident involving a drunk driver. Professor Edward
Carr’s wife, Dr. Ilene Wasserman, also passed away as a result
of the car accident. Dr. Carr was a consummate lecturer,
researcher, and humanitarian. During his 30-plus years in
the autism field, he contributed significantly to the areas of
applied behavior analysis (ABA), functional communication,
and severe behavior problems. In the past couple of years,
Dr. Carr began a paradigm shift within the autism field by
integrating both behavioral and biomedical interventions.
Much of his thinking about this merger was described in detail
in an article with Dr. Martha Herbert titled “Integrating Behavioral and Biomedical Approaches” and an article which appeared in the
last issue of The Autism File titled “Integrating Biomedical and Behavioral Science: The Happy Future Ahead.”
I invited several people to write their thoughts about Dr. Carr including his graduate students and his son, Aaron Carr.
Dr. Carr’s graduate students: Emile
Mulder and Lauren Moskowitz, with
feedback from Lauren Adamek
Ted dedicated his career to helping people
with autism spectrum disorders (ASD)
by trying to understand the functions or
purposes of problem behavior (challenging
or maladaptive behaviors) as well as the
contexts in which those behaviors occur.
The first part of his career was spent
investigating the motivation or function
of problem behavior, the consequences
that maintain problem behavior, as well as
developing interventions to address those
functions. The research of Ted and his
colleagues and graduate students helped
to demonstrate that interventions that are
based on the functions of problem behaviors
are about twice as successful as those that
are not.
Even when assessing the antecedents
and consequences of behavior, Ted also saw
that, within this traditional behavioral model,
it was still sometimes difficult to identify
reliable antecedents or consequences of
behavior, and many behaviors still seemed
completely random. This led Ted to examine
the role of setting events (i.e., broad
contextual factors that make problem
behavior more likely to occur) in altering
the relationship between antecedents and
consequences. Thus, the next part of Ted’s
career was devoted to studying the contexts
that make problem behavior more likely to
Ted’s most recent line of research sought to show that biological or
internal setting events such as fatigue, mood, temperament, and
physical illness all play an important role in determining behavior
and that by altering these factors or adapting to them, we can
greatly improve quality of life for people with ASD and their families.
52
THE AUTISM FILE | www.autismfile.com occur and working to develop interventions
that addressed antecedents and setting
events in addition to only consequences, as
had traditionally been done.
Ted’s most recent line of research sought
to show that biological or internal setting
events such as fatigue, mood, temperament,
and physical illness all play an important role
in determining behavior and that by altering
these factors or adapting to them, we can
greatly improve quality of life for people
with ASD and their families. In addition to
examining this expanded model, Ted’s future
line of research intended to examine systems
factors. Systems factors, including a lack of
family support or school support, greatly
impact setting events, antecedents, and
problem behavior and can often be barriers
to intervention success.
Ted’s mission was to identify and target
all of the factors that contribute to problem
behavior in individuals with ASD in an effort
to mitigate the problematic contexts that
lead to those behaviors and improve quality
of life for these individuals and their families.
ISSUE 33 2009
Keeping autistic individuals in group homes under the influence of psychotropic drugs just
won’t cut it. They have too much potential and this is why my dad spent over 30 years trying
to better the lives of this population.
Dr. Carr’s son: Aaron Carr
The most looked upon people throughout
history didn’t succeed in life because of a
simple mind. It is the ones who had thought
outside the box that remain with us even
after the end of their days. When Martin
Luther King spoke, he wasn’t just talking
about black people, he was talking about all
people. And my father’s strong dedication to
autism contained a similar theme: what can
be done to help one group succeed can be
applied to help any group succeed.
My father dedicated his life to autism
because he knew that he could have a
major impact on the field, but it was his
understanding and compassion for humanity
that was the formula to his success. In life
all of us look for incentives that drive us to
work and be productive members of society.
If a CEO for a big business puts up with all
the stress and hard work his job entails, he
will end up with a meaty paycheck every
week. That’s what the CEO wants, and if he
does his job right that’s what he will get. An
individual with autism may have different
wants and needs, but whatever they are,
my dad felt that they could be used to
reinforce that person to work hard in the
community just like the CEO. This way they
could live their lives with meaning, just like
any productive member of society. Keeping
autistic individuals in group homes under the
influence of psychotropic drugs just won’t
cut it. They have too much potential and this
is why my dad spent over 30 years trying to
better the lives of this population.
But, without people like us helping out,
individuals with autism don’t have a fair
chance. In the short life we live, everyone
deserves a fair chance. People like Martin
Luther King and my father have proved it.
Dr. Ted Carr will be missed greatly by his
colleagues in the autism community and at
the State University of New York at Stony
Brook as well as his friends and relatives.
Truly, a tragic loss to all of us.
References
Carr, E.G., & Edelson, S.M. (2009).
Integrating Biomedical and Behavioral
Science: The Happy Future Ahead. The Autism
File, 32, pp. 106-109.
Carr, E.G., & Herbert, M.R. (2008). Integrating
Behavioral and Biomedical Approaches. Autism
Advocate, 50(1), pp. 46-52.
Did you know that the the different types of the flu,
arthritis, lupus, allergies, and cancer, among others,
can be developed due to failure in the immune system?
When your immune system is perfectly balanced,
you are protected against any disease
BIRM® Concentrated is the only 100% natural product that has been
scientifically proven to modulate and regulate the immune system, if taken on
a daily basis in order to enjoy good health.
BIRM® Concentrated is a patented product in the USA and has been
researched by several scientific entities throughout the world such as Miami
University and Madrid University.
BIRM® Concentrated has been presented in a cancer worldwide conference
as well as two HIV worldwide conferences.
BIRM® Concentrated is a dietary supplement, available without prescription,
and has no side effects.
Direct line: (305) 974 4661
53
BIOMEDICAL
A Best Practices Model for Treating
Autism to Improve Optimal Outcomes:
By Lauren Underwood, PhD
Lauren Underwood, PhD, received her doctorate in
biology from Tulane University. Following graduation,
she was awarded an NIH Post-Doctoral Training Grant
Fellowship in vision research. She is the parent of a
child recovering from autism and a health educator/
Introduction
Autism spectrum disorders (ASDs)
are neurodevelopmental disorders
characterized by deficits in socialization
and communication as well as by abnormal
behaviors patterns (Rapin, 1997; Lord, et
al., 2000; Volkmar and Pauls, 2003). While
most children who develop autism show
abnormalities related to one of these key
areas during infancy, the indicators may
not become obvious until sometime during
the second year of life. Research indicates
that approximately 30–50 percent of
children with ASD have a period of normal
development, followed by developmental
regression, with a loss of acquired skills,
including language. This occurs anywhere
between 16 and 25 months (Lord, et al.,
2004) with the loss of acquired language
typically occurring between the ages 12 and
18 months (Shinnar, 2001).
Currently, autism is defined as a psychiatric
disorder, not as a medical condition, and it
is often perceived as a genetically-based
mental disorder. There is no medical test
for autism; therefore, diagnosis is based
on a combination of psychological testing,
complete history, physical examination,
neurologic examination, non-medical
evaluations (e.g., Checklist for Autism in
Toddlers, Autism Diagnostic Observation
Schedule, Autism Diagnostic InterviewRevised), and direct assessment/
observations of the child’s social, language,
54
THE AUTISM FILE | www.autismfile.com biomedical consultant for families of autistic children.
Dr. Underwood is a Senior Staff Scientist for SSAI,
Inc. supporting NASA. She is a Center for Autism and
Related Disorders (CARD) IRB board member and has
appeared in many peer-reviewed journals.
and cognitive development (Johnson, 2007;
Filipek, et al., 1999; Volkmar et al., 1999).
During normal development, milestones
(skills or age-specific tasks that most
children acquire within a certain age range)
are naturally attained without being taught.
Neurotypically developing children learn
social and communication skills from their
environment and from the people around
them. The developmental milestones include
gross motor, fine motor, language, cognitive,
and social skills. In particular, the first three
years of a child’s life is a developmentally
dynamic time.
When the term “developmental delay” is
used (commonly the first diagnosis given
to a child on the autism spectrum during
an early intervention assessment or by
a developmental pediatrician since the
diagnosis of autism is often not given until
the age of 4 or 5) it refers to a delay in one
or more of the expected developmental
milestones. Generally, these delays are
ongoing and result in an overall major delay
in the whole developmental process. During
the period when autism seems to emerge,
many significant milestones are delayed
or even missed, thereby affecting normal
behavioral development. As a result, more
and more abnormal behaviors begin to
display.
Individually, behavioral treatments like
applied behavior analysis (ABA) as well as
medically-related biomedical approaches
have helped provide effective treatment
modalities for autism. However, to optimize
outcomes, a best practices model that
applies these interventions together provides
the best possibility for successful outcomes.
This approach incorporates behavioralbiomedical treatment as a complementary
synergistic model.
The role of behavioral interventions
Due to missed developmental milestones,
children with autism are less equipped to
acquire skills from their environment. Thus,
behavioral interventions play an integral
role in treating these children by reducing
negative behaviors and increasing normal
behaviors. Research shows the sooner a
delayed child gets behavioral intervention,
the better their progress will be.
Treatment approaches grounded in
behavioral interventions like ABA are
considered invaluable as therapeutic
and educational interventions for these
children. In general, this educational
framework manipulates antecedents and
consequences of behavior to teach new
skills and eliminate maladaptive behaviors.
In particular, ABA uses behavioral analytic
methods to understand current maladaptive
behaviors and to change unacceptable
behaviors into adaptive, acceptable ones.
ABA systematically breaks down a task, skill,
or behavior and then teaches the steps in
sequence so a child significantly improves
ISSUE 33 2009
social behaviors. (Sulzer-Azaroff and Mayer,
1991).
The most common ABA intervention,
discrete trial training, is what most people
think of when referring to ABA. The
discrete trial enables the learner to acquire
complex skills and behaviors by mastering
the subcomponents of the targeted skill.
However, ABA is not just discrete trials, but
a behavioral program of comprehensive
interventions, involving multiple settings,
situations, and day-to-day activities.
ABA has been scientifically studied and
demonstrated to be highly effective for
reducing negative behaviors in autism and
increasing socially acceptable behaviors
(Jensen and Sinclair, 2002).
Given the considerable successful
outcomes of autism treatments based
on behavioral interventions like ABA,
it is easy to understand why ABA is a
necessary treatment. Several decades of
research have proven ABA’s effectiveness
for many children with autism. Many have
achieved the optimal outcome: everyday
functioning that is indistinguishable from
that of typically developing peers. As a
result, treatment approaches grounded in
ABA are now considered the instrumental
therapeutic and educational interventions
for children suffering from this disorder.
In addition, there is also strong support
for complementary therapies, such as
speech, occupational, physical, and sensory
integration.
Why biomedical interventions are
necessary
Although the etiology of ASD remains under
investigation, research suggests that there
is a genetic predisposition, which can be
multifactorial and/or variable in expression
(Lord, 2000). Numerous genes have been
implicated in the susceptibility of certain
individuals to have this disorder. Research
also shows that children with autism
suffer from multiple medical conditions
involving dysfunction in the central and
peripheral nervous systems as well as in the
gastrointestinal and immune systems (Van
Gent, 1997).
Recent study supports a biomedical
etiology for autism. While researchers are still
investigating exact biological or metabolic
pathways, case studies based on practical
applications of this research suggest that
ISSUE 33 2009 The underlying concept of the biomedical approach
is that the behavioral symptoms which define autism
may be—at least in part—related to the child’s medical
conditions. When these illnesses are addressed,
psychological symptoms will improve.
successful outcomes improve when comorbid
conditions—such as digestive disorders,
immune system dysregulation and/or
neuroinflammation—are treated.
Literature provides evidence that comorbid
conditions occur in children with autism
(Ming 2008). Comorbidity is the occurrence
of two or more disorders in the same person
at the same time. Interactions between
the co-existing conditions can affect the
course, prognosis, and treatment outcome of
cases of autism spectrum disorder. If these
conditions are not addressed, they can affect
developmental outcomes in other educational
and sensory-related interventions. Today,
treatments that address comorbid medical
conditions, often associated with the
underlying physiological imbalances
that contribute to ASD symptoms, are
emerging. Consequently, many parents
and practitioners use medically-based
treatment options, including modified
diet, supplementation, and detoxification
protocols.
These biomedical treatments look at the
application of natural, biological, and physical
sciences to medicine and can include any
of the following: healthier diet, nutritional
supplementation, immune system regulation,
gastrointestinal regulation, and detoxification
as medically indicated. The underlying
concept of the biomedical approach is that
the behavioral symptoms which define
autism may be—at least in part—related
to the child’s medical conditions. When
these illnesses are addressed, psychological
symptoms will improve.
The best practices model suggests that, if
indicated, biomedical interventions should
be used to stabilize the child’s medical
symptoms in addition to implementing
behavioral therapy. As a result, the child
can maximize his or her learning potential.
Anecdotal cases now demonstrate successful
outcomes with an acceleration of skill
acquisition within therapy programs in which
biomedical issues are also addressed and
treated.
The position of the American
Academy of Pediatrics
“The Pediatrician’s Role in the Diagnosis
and Management of Autistic Spectrum
Disorder in Children” published in 2001
by the American Academy of Pediatrics
(AAP) discusses specific strategies,
including early intervention, behavioral
management, habilitative therapies (speech
occupational, and physical therapy), and
medical management (including nutritional
supplements, elimination diet, IVIG,
secretin, and chelation), auditory integration
training, and facilitated communication. The
paper states that “ ... pediatricians should
approach alternative therapies openly and
compassionately ... and being willing to
support a trial of therapy in select situations,
and in such situations, requiring clear
treatment objectives and pre-testing and
post-testing.”
Given this AAP recommendation, it is the
responsibility of health care providers to
educate family members and to help children
with ASD by treating these conditions. In
particular, there are several specific systems
of the body that are often affected, including
the immune system, the gastrointestinal
system, the nervous system, and associated
metabolic pathways.
In support of biomedical treatments
Autism is a whole-body condition. The
systems of the body were meant to work
together in a harmonious and integrated
fashion to maintain good health. But when
there is pathology in one bodily system, it
can cause problems to another system.
Gastrointestinal system
Horvath, Wakefield, and others (1999, 2000,
2002) have shown that gastrointestinal
inflammation is common in autism, which
may lead to increased intestinal permeability,
potentially causing abnormal immunologic
responses to food proteins or pathogens.
Three studies by Jyonouchi, et al.
(2002, 2005a, 2005b), found that children
55
BIOMEDICAL
with autism had more hypersensitivity
to food allergens than did neurotypical
children. These allergens are likely to cause
gastrointestinal problems.
The gastrointestinal system digests
food, absorbs and transports vitamins and
nutrients, detoxifies chemicals, and excretes
the remainder. Gastrointestinal abnormalities
can occur as a result of increased intestinal
permeability and intestinal dysbiosis (an
overgrowth/imbalance of intestinal flora),
both of which can be caused by chronic
inflammation/enterocolitis and/or the
inability to properly break down proteins
from foods (in particular gluten and casein).
These can then permeate into the bloodstream, affecting other tissues and systems
of the body, including the brain.
The gastrointestinal and immune systems
are closely related. If gastrointestinal
issues are present, foods and nutrients
won’t be processed or absorbed properly,
so malnutrition, allergies, bacteria, yeast,
antibodies, and further intestinal distress
and pathology can develop. A significant
portion of the immune system is located
in the gastrointestinal tract, and chemical
messengers in the gastroimmune system
communicate with the rest of the body,
including the brain. If gastrointestinal tissue
damage, inflammation, and dysfunction
are present, then distress will not only
manifest in gastrointestinal symptoms such
as abnormal stools, but dysfunction will
manifest in other bodily systems such as the
central nervous system.
Clinical symptoms that can reflect
gastrointestinal issues may include diarrhea,
constipation, reflux, food cravings, bloating,
fatigue, aggression, sleep issues, lethargy,
“spaciness,” agitation, inappropriate
laughing, self-stimulatory behavior, and selfinjurious behavior.
As a practical example, if a child with
undiagnosed gastrointestinal pathology
is posturing (e.g., positioning their belly
over the edge of furniture to exert pressure
on their abdomen) or exhibiting selfinjurious behavior (e.g., biting their hand)
at school when they are suffering from
constipation, their focus upon relieving
their gastrointestinal distress will also cause
a lack of attention to schoolwork. Another
child could exhibit aggressive behavior
when gastroesophageal reflux is causing
indescribable pain and the child is unable
56
THE AUTISM FILE | www.autismfile.com to communicate this to anyone. Particularly
in the case of a nonverbal child, there
may be no other means to communicate
the physical distress except via behavior.
Often school psychologists look for an
antecedent, behavior, and consequence
without considering underlying physiological
issues that could potentially manifest as
problematic behaviors.
Often, children with autism are reinforced
during their discrete trial lessons with treats
that cause allergic reactions. This reaction
can exacerbate negative behaviors. This not
only causes additional distress to the child,
but it results in problematic behaviors that
are counterproductive to academic success
during the remainder of the school day. This
situation places stress upon both the child
and the educators working with that child.
According to the AAP in 2001, the first
steps in investigating and remediating
gastrointestinal issues in a given child
can include nutritional supplementation,
elimination diets, food allergy testing, and
secretin.
Detoxification and metabolic pathways
The liver, the body’s primary means for
detoxification, is designed to remove toxic
matter from the bloodstream. Chronic
gastrointestinal inflammation can adversely
affect nutritional absorption which can affect
detoxification.
Methylation, the transfer of a methyl
group, and sulfation, the biotransformation
of a sulfur group, two metabolic pathways
of the liver, are primarily responsible for a
healthy body’s way of ridding itself of toxic
substances. The methyl and sulfur groups do
this by binding or conjugating themselves
to the toxins thus facilitating the removal of
the toxins from the body. Methylation is also
a process by which methyl groups, pivotal
components of the body’s biochemistry,
are made available for numerous important
chemical reactions throughout the body, such
as DNA and RNA synthesis, and utilization of
important nutrients such as folic acid, vitamin
B6, and vitamin B12. If detoxification systems
are overloaded or compromised, toxins can
build up and cause oxidative stress, which
can further impede proper cell function.
Oxidative stress can also result in decreased
production of glutathione, the body’s major
antioxidant that protects cells from damage.
If important detoxification pathways are
disrupted, multiple systems of the body
can be adversely affected. In particular,
the detoxification pathways that involve
methylation and sulfation in the liver can
become overburdened and fail to sufficiently
remove the body’s toxin load. When this
happens toxins accumulate in the body,
which results in chemical sensitivities and
cellular dysfunction.
The combination of the malabsorption of
essential nutrients due to gastrointestinal
pathology combined with impaired
detoxification mechanisms can overwhelm
an individual’s ability to detoxify normally.
Children with ASD often require nutritional
supplements to bypass their nutritional
insufficiencies and detoxification
inadequacies.
Two studies by James, et al. (2004, 2005),
found low glutathione levels in children
with autism due to abnormalities in their
methionine pathway, which likely contribute
to detoxification abnormalities. Studies by
James, et al. (2004) also demonstrate that
oxidative stress, and subsequent damage
caused by build-up of metabolic byproducts
due to glutathione depletion, may contribute
to the development and associated clinical
symptoms observed in autism.
Recent studies have provided evidence
that metabolic profiles of children with
ASD present with a different methylation
profile in comparison to control children.
Significantly lower serum methionine,
S-adnenosylmethionine (SAM), and
homocysteine levels were found in children
with ASD, pointing to reduced activity of
methionine synthase and the decreased
turnover of the methionine cycle (James, et
al., 2006). Elevated S-adenosylhomocysteine
(SAH) and adenosine levels evident in ASD
further indicate a reduced methylation
capability.
Impaired detoxification can result in some
of the following: sensory and speech issues,
sleep difficulties, self-stimulatory and selfinjurious behaviors, aggression, compulsive
behaviors, night sweats, anxiety, dilated
pupils, and pica (compulsive cravings of
non-food items, such as dirt, clay, cornstarch,
glue, sand, and soap).
Again, in an academic setting, negative
behaviors such as inattentiveness and
aggression could be a reflection of
detoxification issues.
It is important to be aware that in a
ISSUE 33 2009
school environment that includes children
with sensitivity issues due to impaired
detoxification pathways, negative behaviors
can be exacerbated by exposure to commonly
used building and cleaning materials; these
materials include chemicals that outgas from
new carpeting, paint, ammonia, tile glues,
chlorine in swimming pools, and arsenic in
treated wood in playground fences, decks,
chips, and equipment.
First steps in investigating and remediating
detoxification issues in ASD children
include addressing nutritional deficiencies
and malabsorption issues, nutritional
supplementation, and chelation therapy
(AAP, 2001).
Immune System
The immune system defends the body
against substances that appear foreign and
harmful, including bacteria and viruses.
Proper immune responses protect and
defend against pathogens, remember how
to respond, get more efficient over time,
respond appropriately, and do no harm.
When the immune response is compromised
or reacts incorrectly, immune dysregulation,
an abnormal balance and communication
between immune cells, results. When this
happens, the immune system cannot respond
appropriately; as a result, the body might
develop abnormal responses to things it
might not normally react to, like foods.
Frequent infections may also occur.
A large part of the immune system is located
in or near the intestinal tract to prevent
both microorganisms in the intestine and
large food proteins from entering the rest of
the body; therefore, defects in the immune
system can lead to gastrointestinal problems
and vice versa. Additional aberrant immune
responses include chronic inflammation,
allergies, and autoimmune reactions
(when immune cells injure normal body
tissues). These can occur individually or in
combination.
It is important to remember the immune
system is closely connected to virtually every
other system of the body. Over the past 30
years, findings related to differences in the
systemic immune system in patients with
autism have led to the theory that, in some
cases, autism may be an immune-mediated
or autoimmune disorder (Ashwood & Van de
Water, 2004).
Immune system issues can be expressed in
any of the following ways: fevers, compulsive
behaviors, self-injurious behaviors, skin
rashes or eczema, impulsivity, aggression,
and bowel problems including diarrhea,
constipation, and enterocolitis.
This is relevant to an academic situation
because chronic inflammation, such as
sinusitis or gastrointestinal swelling, can
affect attentiveness, and the discomfort
associated with these conditions can
adversely affect behavior.
First steps in investigating and remediating
immune issues in ASD children rely upon
restoring immunological balance and
addressing food allergies, infections, and
possible autoimmune disease.
Nervous system
The nervous system is a network of
specialized cells, including the brain,
spinal cord, and numerous types of
nerve cells, that process information and
enable communication between parts
of the body via neurotransmission. Any
changes in the cells of the nervous system,
like neuroinflammatory responses or
developmental changes in neurocircuitry, can
affect neurotransmission, cell function, and
consequently affect behavior.
Scientists at Johns Hopkins found that
neurpathological changes in the brain tissues
of autistic individuals were associated with
inflammatory responses, neuroinflammation,
and elevated inflammatory cell messengers,
and could possibly relate to ongoing and
chronic issues associated with central nervous
system dysfunction observed in patients with
autism (Pardo, et al., 2005; Vargas ,et al.,
2005).
Nervous system issues can result in
dysfunction to any of the following: central
auditory processing, expressive language,
cognition, mood, sleep, motor planning,
balance, hypo- or hyperactivity, and appetite.
This is relevant in a learning environment
because issues related to one or more of the
previously listed nervous system functions
can affect attention, focus, and behavior.
Putting it all together: the best
practices model approach
Please see Figure 1 below. Overall, when
dealing with a child with autism, issues
Figure 1
57
BIOMEDICAL
associated with any of the systems of the
body—in particular the digestive, immune,
and nervous systems, and metabolic
pathways—can lead to changes in behavior.
Behavior is the key word. Autism is
diagnosed on the basis of a constellation of
abnormal behaviors. Children with autism
often experience 18-24 months or more of
abnormal developmental behaviors before
they are diagnosed, and this delay results
in a huge developmental gap prior to
diagnosis and intervention. Once this early
developmental period has been missed, it is
extremely difficult to recapture. Therefore,
early detection and behavioral intervention
are important. Physical and/or occupational
therapies as well as those targeting sensory
issues may also be needed. However,
underlying medical conditions can affect the
child’s general well-being and responsiveness
to behavioral therapies, and untreated
comorbid biomedical conditions can slow
down any progress. If the underlying
medical conditions are treated, the result is
increased receptiveness to behavioral and
other related interventions. Not surprisingly,
the synergistic effects of behavioral and
biomedical interventions result in an increase
in successful outcomes.
Symptoms and behavioral effects
n
If a child suffers from allergies, focus
and concentration can be affected.
n
If a child suffers from gastrointestinal
distress, such as constipation or
diarrhea, cramping and bloating will
distract them; associated pain may
lead to self-injurious behavior.
n
If the immune system isn’t functioning
properly, increasing infections,
inflammation can affect attention and
concentration.
n
If biochemical or metabolic pathways
aren’t functioning properly,
neurotransmission can be under- or
overstimulated and affect behavior.
If a child suffers from poor digestion,
n
improperly broken down foods can
affect behavior; nutrients essential for
metabolic pathways and cognition may
be missing.
If detoxification isn’t functioning
n
properly, toxin burden increases and
oxidative stress occurs, potentially
affecting attention.
58
THE AUTISM FILE | www.autismfile.com All behavioral strategies can be thwarted by
unresolved medical conditions. When children cannot
express themselves verbally with language, they
often use behaviors to do so.
All behavioral strategies can be thwarted
by unresolved medical conditions. When
children cannot express themselves verbally
with language, they often use behaviors to
do so. Therefore, anyone working with a child
with autism needs to be aware of possible
outward behavioral signs and symptoms
that could relate to underlying medical
conditions. Figure 2 (see page following)
depicts images of symptoms and associated
abnormal behaviors that can be used as red
flags or visual cues indicating possible issues
involving a system of the body.
n
Posturing (a,b) and bloated stomach
(c) can reflect gastrointestinal system
or immune system issues.
n
Eczema (d) and rashes and red ears (e)
can reflect immune system issues.
n
Sound sensitivity (f) can be due to
immune system or nervous system
issues; and
n
Sleep issues: waking, excessive
sleeping or lack of sleep (g,h),
hyperactivity, giddiness (h); toileting
issues: posturing, irritability prior
to bowel movement (i), irritability,
tantruming, unexplained crying (j),
and self-injurious behavior (k) can
all be related and interrelated with
nervous, immune, and gastrointestinal
systems.
These symptoms can affect one or more
systems of the body, and their expression
can vary from child to child. These signs
can help provide important clues related to
possible medical conditions. An individualized
approach to treatment must be employed.
Acknowledgements
I’d like to thank Dr. Jane El-Dahr for her
thoughtful review and editing, Shannon
Ellis for graphics formatting and figure
enhancing, and Teri Arranga for her
constructive editorial comments.
Summary
The potential relationship between autism,
gastrointestinal disorders, and autoimmunity
has been the subject of much discussion and
controversy in recent years. Recent literature
explains how these systems are affected, and
shows, if treated, how healing can improve
health and behavior. Perhaps a paradigm
shift in how autism is diagnosed and treated
is occurring; perhaps in the future, autism
will not be diagnosed as psychological
condition, but rather as a neuro-gastroimmunological disorder resulting from a
genetic susceptibility and an environmental
insult(s). Research is beginning to describe
autism, not only as a psychiatric disorder, but
as a complex metabolic disease which can
be treated and at least partially corrected.
Children with autism—like all children—
deserve medical treatment when they are
unwell. A happier, healthier child is going
to be more responsive to any intervention.
In a best practices model for the treatment
of autism, all these interventions must work
together to address all the core symptoms
for that particular individual, thereby
providing the best possibilities for optimal
success.
Children with
autism—like all
children—deserve
medical treatment
when they are
unwell. A happier,
healthier child is
going to be more
responsive to any
intervention.
ISSUE 33 2009
Figure 2
59
BIOMEDICAL
References
Ashwood P., & Van de Water, J. (2004).
Is autism an autoimmune disease?
Autoimmunity Reviews. 3, 557–562.
Committee on Children with Disabilities,
American Academy of Pediatrics. (2001).
The pediatrician’s role in the diagnosis and
management of autistic spectrum disorder
in children. Management of children with
autism spectrum disorders Pediatrics
107(5): 1221-1226. http://aappolicy.
aappublications.org/cgi/reprint/
pediatrics;107/5/1221.pdf
Filipek P.A., Accardo P.J., Baranek G.T,,
Cook Jr. E.H., Dawson G., Gordon B., Gravel
J.S., Johnson C.P., Kallen R.J., Levy S.E.,
Minshew N.J., Prizant, B.M, Rapin I., Rogers
S.J., Stone W.L., Teplin S., Tuchman R.F.,
& Volkmar F.R. (1999). The screening and
diagnosis of autistic spectrum disorders. J
Autism Dev Disord; 29(6), 439-484.
Johnson C.P. & Myer S.M. (2007).
Identification and evaluation of children
with autism spectrum disorders.
Pediatrics,120,1183.
Lord C., Cook E.H., Leventhal B.L. & Amaral,
D.G. (2000). Autism spectrum disorders.
Neuron, 28, 355–363.
Lord C., Shulman C. & DiLavore, P. (2004).
Regression and word loss in autistic
spectrum disorders. J Child Psychol
Psychiatry, 45, 936–955.
Lord C., & Volkmar F.(2000). Genetics of
childhood disorders: XLII. Autism, part
1: Diagnosis and assessment in autistic
spectrum disorders. J Am Acad Child
Adolesc Psychiatry. 41, 1134-1136.
Jyonouchi H., Geng L., Ruby A., Reddy C.,
& Zimmerman-Bier B.(2005). Evaluation
of an association between gastrointestinal
symptoms and cytokine prouction against
common dietary proteins in children with
autism spectrum disorders. J Pediatr,
146(5):605-610.
James S.J., Melnyk S.B., Jernigan S., Janak
L., Cutler P. & Neubrander J.M. (2004)
Metabolic biomarkers of increased oxidative
stress and impaired methylation capacity
in children with Autism. Amer J Clin Nutr
80:1611-1617.
James S.J. Slikker III, W., Melnyk S., New E.,
Pogribna M. &Jernigan S. (2005) Thimerosal
neurotoxicity is associated with glutathione
depletion: protection with glutathione
precursors. Neurotoxicology, 26: 1-8.
James S.J., Melnyk S., Jernigan S., Cleves
M.A., Halsted C.H., Wong D.H., Cutler P.,
Bock K., Boris M., Bradstreet J.J., Baker
S.M. &Gaylor, S.W. (2006). Metabolic
endophenotype and related genotypes
are associated with oxidative stress in
children with autism. Am J Med Genet B
Neuropsychiatr Genet, 141B(8): 947-956.
Horvath K., Papadimitriou J.C., Rabsztyn
A., Drachenberg C. & Tildon J.T. (1999).
Gastrointestinal abnormalities in children
with autistic disorder, J. Pediatrics, 135(5):
559-563.
Horvath K. & Perman P.A.(2002). Autistic
disorder and gastrointestinal disease. Curr
Opinion in Pediatrics, 14: 583.
Jensen, V. K. & Sinclair, L. V. (2002).
Treatment of autism in young children:
behavioral intervention and applied behavior
analysis. Infant and Young Children, 14(4),
42-52.
Ming M., Brimacombe M., Chaaban J.,
Barbie Zimmerman-Bier, B., & Wagner
G.C.(2008). Autism spectrum disorders:
Concurrent clinical disorders. J Child Neurol,
23(1): 6-13.
Jyonouchi H., Sun S., & Itokazu N.
(2002). Innate immunity associated with
inflammatory responses and cytokine
production against common dietary proteins
in patients with autism spectrum disorder.
Neuropsychobiology 46(2): 76-84.
Pardo C.A., Vargas D.L. & Zimmerman
A.W. (2005). Immunity, neuroglia and
neuroinflammation in autism. International
Review of Psychiatry, 17(6): 485-495.
Jyonouchi H., Geng L., Ruby A. &
Zimmerman-Bier B. (2005). Dysregulated
innate immune responses in young
children with autism spectrum disorers:
their relationship to gastrointestinal
60
symptoms and dietary intervention.
Neuropsychobiology, 51(2), 77-85.
THE AUTISM FILE | www.autismfile.com Rapin I. (1997) Autism. N Engl J Med,
337:97-104.
Rapin I. The autistic-spectrum disorders.
(2002) N Engl J Med,347:302-303.
Shinnar S., Rapin I., Arnold S., Tuchman
R.F., Shulman L., Ballaban-Gil K., Maw
M., Deuel R.K., & Volkmar F.R. (2001).
Language regression in childhood. Pediatr
Neurol 24:183-189.
Sulzer-Azaroff B. & Mayer R. Behavior
analysis for lasting change. (1991). Fort
Worth, TX: Holt, Reinhart & Winston, Inc.
Van Gent T., Heijnen C.J., &Treffers P.D.
(1997) Autism and the immune system. J
Child Psychol Psychiatry, 38:337-349.
Vargas C.L., Nascimbene C., Krishnan C.,
Zimmerman A.W. & Pardo C.A (2005).
Neuroglial activation and neuroinflammation
in the brain of patients with autism. Annals
of Neurology, 57(1): 67-81.
Volkmar F., et al.(1999). Practice
parameters for the assessment and
treatment of children, adolescents, and
adults with autism and other pervasive
developmental disorders. American
Academy of Child and Adolescent Psychiatry
Working Group on Quality Issues. J Am
Acad Child Adolesc Psychiatry,38:32S.
Volkmar F.R., & Pauls D. Autism.(2003).
The Lancet 362:1133-41.
Wakefield A. J., Anthony A., Murch S.H.,
Thomson M., Montgomery S.M., Davies
S., O’Leary J.J., Berelowitz M., & WalkerSmith J.A.(2000) Enterocolitis in children
with developmental disorders. Am J
Gastroenterol, 5(9): 2285-2295.
THE AUTISM FILE DIRECTORY
The Autism File Directory has recently
been launched and is free to parents
and families that need to get help in all
areas of autism. It features details of autism
organizations, charities, adult facilities,
biomedical
interventions,
conferences
and events, diagnostic labs, schools, food
suppliers, holidays, nutritionists, practitioners
(Defeat Autism Now!), specialist suppliers,
presentations, and research papers.
For more information on how you can
access this directory, please go to
www.autismfile.com and click “Directory.”
If you think that there should be someone or
a company that you know that can help the
autism community, then please contact us at
1-309-343-5483 or by email
info@autismfile.com
ISSUE 33 2009
...are available as
PDF downloads*
* Issues 29 - 31 available in hard copy or pdf format.
Issues 1 to 28 ONLY available as pdf downloads.
YOUR DETAILS
Title: Mr/Mrs/Ms/Other......................
Name...................................................................................................
Address.................................................................................................
............................................................................................................
Issue 32





............................................................................................................
The Autism Trust Campaign 2009
Autism Mothers
Diagnosis Autism: What Now?
From the Front Lines of Autism
Somali Children with Autism
.............................................................................................................
Postcode/ZIP.......................................................................................
Tel........................................................................................................
Email....................................................................................................
Issue 31





Please tick the box of the Issue(s) you would like to buy
(A full list of back issues and their contents is available on
our website www.autismfile.com)
What is Autism?
The Shifting Role of Genes
Effective Verbal Behavior Program
Autism in Romania
Dr. Andrew Wakefield Case
Issue 30





Vaccine Damage & The British Press
My Daughter, Hannah Poling
Healing The Gut
Orlando Hudson Interview
Down Syndrome & Autism





Carmel Wakefield
Diet for Autism
Autism One Radio
Dr. Sidney Baker
Defeat Autism Now 2008
Issue 27





What to do after diagnosis
America Speaks Out
Students with Asperger’s
SEN - The Legal Maze
Explosive Interviews
Issue 31 The Autism File (Hard copy) $7
Issue 31 PDF The Autism File $5
Issue __ The Autism File $5
$
PAYMENT DETAILS
A New Theory in Teaching Language
Children with Autism are Treatable
Dr. Amy Yasko
Dr. Federico Balzola
Human Rights Violation Issue
Issue 28
TOTAL TO PAY
Issue 29





Please debit my: Visa / Mastercard
Card Number
Start Date
/
Expiry Date
/
3 Digit Security Code
Issue 28 Summer 2008 £4.95
The Autism File covering Autism, Aspergers, ADHD, ADD and other Spectrum disorders
Signature.......................................................................................................
A programme to help
Dyslexia, Dyspraxia
and Autism
DAN Co-Founder
Dr Sidney Baker Reports
Date.........................................................
I enclose a check for $
Account name/payee The Autism File
DIET FOR AUTISM
A radio station
dedicated to AUTISM
Please tick box if you do not want to receive information
from third party suppliers or services.
Issue 27 Spring 2008 £4.95
The Autism File covering Autism, Asperger’s, ADHD, ADD and other Spectrum disorders
What to do after diagnosis
America
Speaks Out
SEN - The Legal Maze
Special Educational Needs
Students with
Asperger’s
Homoeopathy in Autism
A pilot study with homoeopathic Secretin
Exclusive interviews
PLEASE SEND TO
The Autism File,
Kimberly Linderman, 214 Arnold St. Galesburg, Illinois 61401
or email: kim@autismfile.com
with Bryan Jepson MD and Dan Rossignol MD
61
Relationship Development Intervention® (RDI®)
Getting to the
Heart of the Child
Carmen Augustin, MSW, LCSW,
has over 25 years experience
working with children, teens, and
young adults with autism spectrum
disorders and their families. She
is a partner in Sweeney, Augustin,
and Associates, a private practice
located in Skokie, Illinois, providing
comprehensive services to children
with special needs and their families.
Ms. Augustin is a Relationship
Development Intervention Program
Certified Consultant, receiving her
training and supervision from Dr.
Steven Gutstein and Dr. Rachelle
Sheely of the Connections Center
in Houston. She co-authored “I
feel like I got my baby back,” which
was included in the book titled My
Baby Can Dance: Stories of Autism,
Asperger’s and Success through
the Relationship Development
Intervention® (RDI®) Program.
Ms. Augustin is on the professional
advisory boards of the Autism
Society of Illinois. She has presented
at numerous conferences on the
subject of autism and RDI®.
62
THE AUTISM FILE | www.autismfile.com By Carmen Augustin, MSW, LCSW
T
im’s mom and I were about to swing
Tim in the parachute again, an
activity he enjoyed. We both nodded
excitedly with big smiles on our faces,
using everything we had to invite him to
climb in – except for the spoken word. He
looked at us with bewilderment and then
took his index finger, put it under his chin,
and began to lift his head up and down,
forcing himself to nod, and asked, “What
does it mean when you are doing this?”
He was 8 years old. The quote is exact –
he had beautiful language, yet he did not
understand a head nod.
A moment can illuminate and transform.
When I glanced at Mom, I could see it was
just as revealing to her as it was to me.
We were in the early stages of our RDI®
work, and it was clear that we were on the
right path. We created a small moment
of uncertainty that gave her son a small
moment of discovery. He could figure
things out that previously had simply been
too confusing, often resulting in withdrawal
from social situations. Not this time. This
time he persisted and there was no turning
back.
RDI® was developed by Dr. Steven
Gutstein and Dr. Rachelle Sheely of the
Connection Center in Houston. It is a
developmental model of therapy based on
typical child development. We empower
parents to take on the active role of guide
to their children with autism spectrum
disorder (ASD) to create dynamic learning
opportunities. RDI® recognizes the
extraordinary power of the parent-child
relationship. The program restores the
typical parent-child relationship, in which
parents guide their children through an
uncertain, confusing, and challenging world.
There is no better person for this journey
than the child’s mother or father. We know
that ASD interferes with children’s ability
to integrate or retain the typical learning
opportunities that begin at birth with
parents. RDI® is an opportunity to invite
that process in again with the knowledge
that the child has unique challenges in
participating in the dance between parent
and child. If we can slow down the music,
then we can give our children not just the
ability to dance, but the desire.
Parents are the catalyst for remediation
in the RDI® program through their role as
guides. Gutstein explains this role in his
recent book:
The Guided Participation Relationship
(GPR) is the cornerstone of parentchild functioning in every society
on earth. In this special type of
collaboration, an experienced guide
carefully prepares situations in
which a less experienced apprentice
can productively struggle with
uncertainty and challenge. Guides
carefully balance establishing a safe
environment in which the apprentice
can feel competent, with cognitive
challenges that are just a bit ahead of
the current level of the apprentice’s
understanding and stretch the
apprentice’s mental functioning. This
creates the impetus for the formation
of more complex and more highly
integrated neural networks.1
ISSUE 33 2009
This is how children learn – they study their parents and then they borrow what they learn.
In RDI the focus is on the joy of the shared experience between parent and child.
RDI® is meant to be inclusive. Siblings are often included.
Parents take on the role of guide to
their child, helping the child see the
world through their experience.
RDI® recognizes the
extraordinary power of the
parent-child relationship.
The program restores
the typical parent-child
relationship, in which
parents guide their children
through an uncertain,
confusing, and challenging
world. There is no better
person for this journey than
the child’s mother or father.
ISSUE 33 2009 “Come hungry, leave happy!”
In other words, parents guide children
through their experience. One example of
this is the first time a parent feeds a child
solid food. Almost without exception, the
child, overwhelmed by this new sensory
experience, spits it out. The parent overrides
this experience by convincing the child
that these smashed peas are delicious. We
amplify our facial expression and voice,
exaggerate our movements, communicating
reassurance in every act in an effort to get
the child to believe that this will be good
for him or her. In actuality, for many of us,
it is the first time we lie to our children. We
don’t believe for a minute those peas are
yummy, yet we convince them otherwise,
knowing that eating the peas will lead to so
many other really delicious things later on.
With time, the child believes, and in go the
peas.
RDI® recognizes that parents of children
with ASD have engaged this process.
It is clear in the guided participation
relationships they have with other children.
It is equally clear that ASD interferes with
that relationship. RDI® is a program that
works to get parent and child back on the
developmental track. I believe it helps
parents get to the heart of the child.
Each family that participates in RDI®
works with an RDI® Program Certified
Consultant.2 The consultant guides the
parent in face-to-face session work and
support through the online RDI® Learning
System (RDILS). The RDILS allows parents
and consultants to track progress, document
63
work via video and narrative, provides
parents with learning opportunities, and
gives parents the ability to obtain the
support of other RDI® parents via parent
forums, consultant-led online webinars, and
RDIconnect® continuing RDI® education.
A Relationship Development Assessment
(RDA) looks at the current state of
the parent-child GPR. It identifies the
strengths and obstacles for both the child
and parent and helps parents understand
how the autism has impacted the GPR.
Understanding the core issues for
individuals with autism helps each family
and their consultant develop an intervention
program that best meets the unique needs
of the child and his or her family.
In his study of dedicated researchers
throughout the world, Gutstein found a
remarkable consensus among the scientists:
even the most capable individuals on the
autism spectrum lacked certain abilities
necessary for success in managing the
real-life environments that are dynamic and
changing. Gutstein discovered that many
different abilities are essential for success in
dynamic systems. It is these core areas that
are addressed in RDI®. This description and
that of each core area can be found on the
Web site rdiconnect.com. The examples are
taken from my RDI® work.
Experience Sharing: Sharing different
perspectives, integrating multiple
information channels, and determining
“good enough” levels of comprehension.
Using language and nonverbal
communication to express curiosity, invite
others to interact, share perceptions and
feelings, and coordinate your actions with
others.
Information gathered in the assessment
indicated that Tim responded nicely to
verbal information and direction, but he did
not reference his social partners as he did,
thereby missing out on critical information
that we use to understand intention,
emotion, and context that helps build our
understanding of relationships.
For Tim’s parents, this meant altering
communication with their son. They began
by being vigilant to communicating only
when their son was physically oriented to
them. Many times this meant delivering
communication in close proximity to their
son, sometimes using a touch to create a
64
THE AUTISM FILE | www.autismfile.com moment that stood out as important to
Tim. They began to steer their language
with Tim back to a more balanced rate of
declarative or experience sharing language
such as, “What a beautiful picture,”
or “That is a big dog.” They increased
their use of nonverbal communication,
amplifying facial expressions and gestures.
With Tim beginning to pay attention
to these communications, he was able
to glean much more information from
each interaction. He was able to use this
information to understand intention and
read his parents’ calming tones and facial
expressions as a way of calming himself and
resolving uncertainty. He became an active
participant in the interaction. He began to
use head nods and shakes and gestures,
and he widened his use of facial expression
– not because we taught him the skill, but
because he began to pay attention to faces,
not just the words. As he found meaning,
he discovered he could use it. This is how
children learn – they study their parents
and then they borrow what they learn. Tim
was a becoming a competent apprentice to
his parents, learning through the guided
participation relationship.
Dynamic analysis: Determining relative
meaning and value of information. Ongoing
subjective appraisal of continually changing
contextual information to determine the
best fit. Ongoing evaluation of change. The
ability to observe and continually regulate
one’s behavior to participate in spontaneous
relationships involving collaboration and
exchange of emotions.
This is an RDILS post I received from a
dad recently regarding his son (who has
significant challenges in communication)
and his reaction to the family cat dying.
Yesterday, our 18-year-old cat, Zack,
died. We had to have him put to
sleep, and Kaden came along with
us to say goodbye. That was Mom’s
idea, and I am glad she suggested
it. Last night, as he recounted that
Zack “got died,” he added these two
statements: “Kaden’s not going to get
died” ... then a long pause ... and said
“Mommy and Daddy are not going to
get died.” He clearly got it specifically
and, it appears, on a broader level. I
have been so amazed by him lately.
The piece of advice I have
to give all parents is to
stop being so good. Their
children need them to
do less in just the right
measure at just the right
moment.
In these shared words we can “see” how
much dynamic thought went into sharing
these words with his parents. Each word
was thoughtful and precious. Each word
conveyed so much meaning and revealed
so much of what their child was thinking.
Flexible and Creative Problem Solving
(Relational-Information Processing):
The ability to obtain meaning based
upon the larger context. Solving problems
that have no “right or wrong” solutions.
Developing multiple, equally good
strategies for an imperfect world, including
“good enough thinking,” improvisation
and “work-arounds.” The ability to rapidly
adapt, change strategies, and alter plans
based on changing circumstances.
Just this last week in a session with
mom, dad, brother, and child with ASD, I
handed the child a bandana. We had just
finished a rollicking game of Guesstures
and the score was written on plastic with
a crayon. We were cleaning up. He looked
at me, glanced at his parents, checked out
the items left on the table and then took
the bandana and wiped the scores off
the plastic. A small moment, a beautiful
piece of thinking. By doing nothing except
handing him the bandana, we gave this
child an opportunity to figure it out. He
rose to the occasion and was quite proud.
We could all see this in his expression.
I learned something early in my role as
an RDI® consultant. Prior to RDI® I was
doing too much of the work. I did not
give the children the time and space they
needed to figure it out, to struggle just a
little. The piece of advice I have to give
all parents is to stop being so good. Their
children need them to do less in just the
right measure at just the right moment. We
have a guiding quote in our office: “Don’t
just do something, sit there.” It reminds
ISSUE 33 2009
all of us that a little time can be all a child
needs. Never was this better said than by
a 14-year-old. He was playing a game of
cards with his dad in a session. Dad was
in no hurry, giving his son all the time and
silence he needed to make his next move.
His son looked up at me and said, “I think
if the whole world would just slow down,
I’d be OK.”
Episodic Memory and Self-awareness
(Foresight and Hindsight): The
ability to reflect on past experiences and
anticipate potential future scenarios in
a productive manner. Developing an
internal mental “space” to consider, reflect,
preview, prepare, regulate, evaluate,
hypothesize, and dream.
If you talk to me about your
grandmother, I will remember my
grandmother and I will smile. If you ask
me to speak in public, I will say yes,
remembering how nervous I was the first
time, but I did it, it went well, and when it
was over I actually felt very good.
If you ask me about taking up piano
lessons at 45 years of age, I will remember
the sheer terror I felt at recitals as I played
“Zum Gali Gali” while everyone else
played Mozart or Chopin. I will do public
speaking; I will not take piano lessons
again.
With RDI®, parents help children encode
whole memories of events by spotlighting
the important moments. We cannot create
memories for someone, but we can cause
a moment to stand out. Sometimes, by
gently touching a child and saying with our
faces, “Wow, you did it, you were scared,
nervous, upset, but you pushed past and
you did it,” we can make that moment of
recovery and success stand out and hope
that the child will store it as the most
important.
A child came in with his mother quite
upset, feeling that no one understood how
bad his autism was. Mom was very calm;
we listened and then slowly presented
some options that we felt might make him
feel better, activities that he felt competent
in, which presented him with just enough
challenge. We watched as his mood began
to shift. As he was getting ready to leave,
he looked at me and said, “This place is like
IHOP. Come hungry, leave happy.” Mom
looked at him and said, simply, “indeed.” A
ISSUE 33 2009 “I’m learning to take chances.”
few months later, prior to a session, Mom
left a voicemail indicating that her son had
had a very tough day. I made a sign for
the door to my office. It said “IHOP.” That
word, by itself, triggered the memory of
leaving happy. He left the yuck of the day
outside the door.
Resilience: Coping with a “messy,”
unpredictable world, where setbacks and
errors are unavoidable. Responding to
uncertainty in a productive manner.
Tim is now venturing out into the
community by himself. He has been teased,
surprised, confused, and rained out. He
has missed a bus, forgotten his groceries,
left change, and gotten yelled at by a
stranger for going through a door first. He
has experienced 100 other little setbacks.
But because he has managed all these
setbacks, he has also experienced amazing
successes. He has gone to the movies with
friends, tried all kinds of new foods, ridden
his bike distances most adults wouldn’t try,
given a speech at his graduation, joined an
acting class, written restaurant reviews for
an autism Web site, visited friends, ridden
giant roller coasters, and is about to get on
a plane by himself. Resilience.
Where are we now?
One year ago, Tim decided he was ready
to go to away camp for the first time. After
some good research guided by another
RDI® parent, the family decided on a camp
in another state. Tim called from the airport
and left this message:
“Hey Carmen, happy birthday. I’m at the
airport. The plane was delayed three hours,
but I’m getting on the plane now. I think
I’m going to have a good time at camp. I’ll
call you when I get home. Goodbye.”
Experience sharing, dynamic, flexible,
Tim with ukelele: Tim provides the entertainment
at a “fancy party” he helped plan.
resilient, and episodic. I kept that message
for months and it put a smile on my face
each time I listened to it. It makes me smile
to write it.
Tim came into his first session after
camp (he is going off to camp again this
year, flying alone and meeting a friend)
with the biggest smile on his face. He
was next to his mom, of course, who was
standing behind him, smiling even bigger.
I could see he simply couldn’t wait to tell
me something. “Carmen, I learned to take
chances.” And I smile as I write this. Yes
indeed.
This article is dedicated to every family
that I have had the privilege of working
with. Your shared RDI® experiences have
touched each word.
The following resources can give you more
information about RDI® and help you find an
RDI® consultant in your area:
www.rdiconnect.com
The RDI® Book: Forging New Pathways
for Autism, Asperger’s and PDD with the
Relationship Development Intervention®
Program
References
1
Gutstein, S.E., (2009) The RDI® Book: Forging
New Pathways for Autism, Asperger’s and PDD
with the Relationship Intervention® Program.
2
www.rdiconnect.com
65
ADVOCACY
By Lori McIlwain
WHAT YOU NEED TO KNOW
TO KEEP YOUR CHILD SAFE
Lori McIlwain is the co-founder and chairperson of the Board of the National Autism Association.
I
’ll share a story about that night.
It was 7ish. Connor’s giggling
managed to overpower even the tree
frogs and summer crickets. He was up to
six lightning bugs but wanted to catch
a few more. “Then I’ll let ‘em go, Mom,
promise!” His lanky legs flitted from one
pulsing glow to the next, using the dark
backdrop of the summer foliage as a
guide. Lines of sweat streamed down his
face, collecting dirt along the way, and his
normally caramel-colored hair had turned
a deep brown from the dampness. He’d
crouch to the jar, open his hands and
thoughtfully sink another in. “I have nine
now!” He danced that Mason jar around
the yard like it was a trophy, managing to
pant out the words, “Can I ride my bike
after I let ‘em go?” I nodded of course.
He took one last proud look, unscrewed
the lid, and watched as each faded into
the dusk. He ran to hug me just before
bolting to the garage where his helmet
dangled from a hook. “I’ll only ride up to
the Coopers’ house and then come right
back, and NOOOO, I won’t ride in the
middle of the street!” He jumped on his
bike but was sure to look back. “Love ya,
Mom.”
“I love you too, Connor.”
And there I sat on the brick stoop,
66
THE AUTISM FILE | www.autismfile.com still warm from the afternoon sun, and I
watched my little boy ride off on a bike
that didn’t exist following a conversation
that didn’t exist. Connor has autism.
The stoop part – that was real. And the
warm evening. I sat outside and watched
the lightning bugs cast a lightshow against
a row of trees, which led to a play in my
head of what could be happening if not
for the (expletive) diagnosis. Something I
often do. But at the end of that particular
fantasy-world binge, I reminded myself,
“No, he’s the one stuck in the jar … we’re
the ones fighting to unscrew the lid.
They’re the ones tightening that lid. Damn
them all to hell.”
By them I mean the people within
the school system who are abusing our
disabled children. Earlier in the day, I
had read the May 2009 Government
Accountability Office (GAO) report on
restraint and seclusion in schools. I was
still outraged and bitter over the stories
of torment, abuse, and homicide. I think I
was on my second glass of wine in hopes
of subsiding my anger. I couldn’t imagine
Connor being abused. I’d rather imagine
fairy-tales of lightning bugs and bike
rides. Wouldn’t that be brilliant of me to
turn a blind eye? More like small. Weak.
Complacent. The dreaded blindness I see
ISSUE 33 2009
so much in those too scared to stand, too
comfortable to speak, too head-up-theirass to care.
One story stuck – a 7-year-old girl who
was suffocated and killed after several
adults pinned her to the floor. I later
learned she died because she was blowing
bubbles in her milk and didn’t follow the
“time-out rules regarding movement.”
How on earth could this be happening in
our schools? And how could I ever imagine
it wouldn’t happen to my child? And why
would I ever be OK with it happening to
this beautiful girl? And why aren’t you as
mad as hell like me?
I’m betting you already are.
My son had a new teacher and
assistant. I thought everything was
OK and the assistant really seemed to
be a nice girl. When I was around, she
was sweet to my son and the other
kids. But after a few months, he didn’t
want to go school – he cried in the
mornings. I asked about it and they
said he was fine at school, nothing
different than usual. He seemed to be
worse when the teacher was off for
the day, so I thought maybe it was the
substitute or something. One day he
came home with bruises all over his
legs. I was appalled and immediately
went to the school. I was told he did it
to himself from stimming, even though
it never caused bruises before. My gut
told me something wasn’t right, so I
bought a voice-activated tape recorder
and hid it in his backpack. I could not
believe how he was treated. My heart
broke and my anger rose as I sat and
listened to his aide berate, ignore, and
tease my nonverbal child who could
not defend himself. I didn’t hear her
do anything physically to him that day,
although she is heard telling one child
to get the paddle “because he needs
it.” I made copies of the tape and took
it to his principal and teacher. They
didn’t fire her immediately. My biggest
regret is that when those bruises first
appeared, I ignored my gut and didn’t
call the police and press charges. I
know my son better than anyone and
knew that something was going on.
Maranie
ISSUE 33 2009 The 2009 GAO report found no federal laws in place to keep
educators from using dangerous and abusive methods to
restrain or seclude a student. State laws? Dismal.
uniformly followed, special ed students
remain at risk due to poor judgment calls
and lousy interpretation.
AREN’T THERE LAWS IN PLACE TO
PROTECT CHILDREN IN SCHOOL?
The 2009 GAO report found no federal
laws in place to keep educators from
using dangerous and abusive methods
to restrain or seclude a student. State
laws? Dismal. The report listed 19 states
with zero laws in place, and the laws in
remaining states were labeled as “widely
divergent.” Although the Children’s
Health Act of 2000 protects children
from abusive practices in facilities such as
hospitals, residential treatment centers,
and residential group homes, it does not
protect children from such practices in
schools.
What led to that eye-opening GAO
investigation was an earlier report released
in January 2009 by the Disability Rights
Network, which showed “… 41 percent of
states have no laws, policies, or guidelines
concerning restraint or seclusion use in
schools; almost 90 percent still allow prone
restraints, and only 45 percent require or
recommend that schools automatically
notify parents or guardians of restraint/
seclusion use.”
Most state laws are left open to
interpretation – and dangerously so. If
your state law says restraint is allowable
in the instance of school property
destruction, children are at risk of dying
because they flipped over a desk or
wrote in a book. A 4-year-old child was
aggressively restrained in Florida because
he broke the school’s crayons. Until that
line is clearly defined and the rules are
Last week my 11-year-old son’s
chin was split open to the point of
needing stitches during a restraint.
This tragedy could’ve been avoided
simply with a “therapeutic walk”
prior to restraining. No de-escalation
techniques were used, and the staff
improperly put him in a prone position
facedown on the floor. The staff had
both of his arms, so his chin broke his
fall/pull-down to the floor. He’s come
home multiple times with bruises from
being restrained. He’s now receiving
home services from the school district.
Liberty Hill Academy, SC
VARIABLES OF RESTRAINT
AND SECLUSION
According to the Disability Rights
Network, a restraint is any manual
method, physical or mechanical device,
material, or equipment that immobilizes
or reduces the ability of an individual.
Seclusion is the involuntary confinement
of an individual alone in a room or
area from which he or she is physically
prevented from leaving.
In most states, different types of
restraint are allowed if the child is at risk
of hurting him or herself or someone else.
These types include prone restraint (the
child is laid in the facedown position) and
supine restraint (the child is laid in the
faceup position).
In the article, “Downright Dangerous,”
Wanda K. Mohr, PhD, APRN, BC, FAAN,
lists a number of ways in which people
can die from a restraint, including death
by aspiration, blunt trauma to the chest,
malignant catecholamine-induced
cardiac dysrhythmias, thromboembolism,
rhabdomyolosis with subsequent renal
failure, and overwhelming metabolic
acidosis from intense struggle. Also,
according to Mohr, although any prone
restraint has the potential to be deadly,
67
ADVOCACY
children and adults receiving psychotropic
medications (as many of our children are)
are at great risk for asphyxiation in prone
positions secondary to the abdominal
adiposity, a result of second-generation
antipsychotics. She also notes that one of
the most dangerous false assumptions is
that if an individual can talk, then he or
she can breathe adequately. In many of
the restraint-death scenarios, the medical
record indicates that the restrained
individual said, “I can’t breathe,” and
staff members believed that he or she was
“manipulating” them.
I am considering homeschooling my
third grader. We have tried for years
for teachers and staff to see him as an
avid learner with learning disabilities,
NOT an obstinate child who can do
all the work but just “doesn’t want
to.” He was secluded and restrained
in kindergarten until we removed it
from his “crisis” plan and forbade it
in writing. He dislikes school and is
spiraling downward. Ange
THE STORIES
The case studies listed in the GAO report
induce in me an immediate feeling of
nausea: 14-year-old boy suffocated;
4-year-old tied with leather straps to a
chair and beaten; 10-year-old boy secluded
at least 75 times over a six-month period
with no supervision and left to pee on
himself; 14-year-old boy left to hang
himself in a seclusion room after he begged
not to go and threatened suicide; five
children duct-taped to desks with their
mouths taped shut. Of those cases the
GAO reviewed, at least 20 led to the death
of a child. All of them had some form of
disability, and all of them had names and
favorite songs and favorite foods and
families that loved them.
Outside of the report, recent news
headlines are equally disturbing: 14-yearold boy burned by his teacher with a
cooking pan; 11-year-old nonverbal boy
repeatedly hit by teachers caught on audio;
7-year-old boy restrained and force-fed
until vomiting; 11-year-old boy with bleach
thrown in his face; group of students in
my state of North Carolina handcuffed and
forced to “wrestle”; another boy in Detroit
68
THE AUTISM FILE | www.autismfile.com handcuffed to a doorknob for four hours.
Endless stories … senseless reasoning.
And because of these barbaric acts of
abuse by the very people assigned to
protect our children, that Mason-jar lid
is only closed tighter on their progress.
All of the positive effects from speech
therapy, ABA, Floortime™, occupational
therapy, diet changes, mile-long lists of
supplements, protocol after protocol, and
fighting and clawing for your child to reach
just one milestone, can disappear because
of one act of abuse.
Nonverbal children? The easiest targets.
No cognitive function to outsmart someone
bigger. No fine motor functions to defend
themselves. And these children are forced
to go back time and again because they
don’t have the words to tell their parents
(or anyone), “This teacher hurt me. This
aide sat on me. This teacher called me
pathetic and stupid. This aide locked me
in a janitor’s closet. This teacher sprayed
lemon juice in my face. This aide forced
peanut butter into my mouth.”
According to the Alliance to Prevent
Restraint, Aversive Interventions and
Seclusion (APRAIS), aversive methods
currently in use include forced exercise,
shaving cream to the mouth, lemon juice,
vinegar, or jalapeno pepper to the mouth,
water spray to the face, placement in a tub
of cold water or cold showers, slapping or
pinching with hand or implement, ammonia
capsule or vapor to the nose, blindfolding
or other forms of visual blocking, placement
in a dark isolated box or other methods
of prolonged physical isolation, ice to the
cheeks or chin, withholding of meals or
denial of adequate nutrition, teeth brushed
or face washed with caustic solutions, and
prolonged restraint or seclusion.
HOW YOU CAN PROTECT
YOUR CHILD
Familiarize yourself with the signs of abuse
listed under “Things to Look For” on page
70 in this article. Also, go to your computer
and download a sample “no consent”
letter from aprais.tash.org or from
nationalautismassociation.org. This letter
should be given to school administrators
and placed in your child’s individualized
education program (IEP). It should outline
what is acceptable and what is not. It
should state that any incident be reported
to you immediately.
Calling a meeting to discuss restraint and
seclusion with teachers, aides, therapists,
and staff who work with your child will give
you the opportunity to define the line they
cannot cross while making them aware that
you’re watching them … and for signs of
abuse in your child.
If there is a staff member or therapist
you know and trust, ask him or her to be
your eyes and ears, and explain that he
or she can alert you of any misconduct in
complete confidence. Offering the option
of anonymity may remove anxiety of
reporting a co-worker.
Even if your state has laws in place, don’t
accept them as security. As long as there
are no cameras in the classrooms, what
happens each day in schools remains a
mystery … especially when dealing with a
nonverbal child.
Keep in mind that parents who suspected
abuse were able to confirm it by purchasing
a voice-activated recorder and placing it in
their child’s backpack or by simply asking,
“Have you ever needed to restrain my
child?” The answer may surprise you.
Many special ed classrooms are
understaffed and overwhelmed. Be sure to
offer support to your child’s teachers and
aides. Volunteer, offer encouragement, and
show appreciation for all their hard work. It
will go a long way.
Lastly, write and call your state and
federal lawmakers and demand legislation
that bans prone restraint and seclusion
rooms. Phyllis Musumeci of Families
Against Restraint and Seclusion likens
seclusion rooms to “solitary confinement
in prisons.” She says, “Seclusion rooms
need to be replaced with sensory rooms
to act as a place of calming, not a place of
punishment.”
ISSUE 33 2009
Along with restraint and seclusion regulations and cameras
in every special ed classroom, stiffer penalties for firsttime offenders, stronger background checks, and a better
reporting system should all be in place.
Most importantly, universal training should be made
available to every staff member in every district.
Supervision and surveillance in these
rooms are a must. Cameras in every
special needs classroom are a must. If fire
alarms can be installed in every school in
America, so can cameras. They’re equally
as important because they both alert us
to danger. Those who contest cameras in
classrooms because of lack of funding or
privacy laws are defending a broken system
over children’s safety. It’s very simple:
cameras in classrooms would remedy this
issue overnight.
Have there been acts of abuse, restraint,
or seclusion in your child’s school? View a
list at familiesagainstrestraintandseclusion.blogspot.com.
I am currently homeschooling my
son who was restrained without my
knowledge, was handcuffed in school,
and was put in a locked seclusion BOX
for hours. He was not allowed to use
the restroom. He came home bruised,
with rug burns under his arms. Tammy
WHO’S HELPING, WHO’S HURTING
When the National Autism Association
(NAA) teamed up with 12 other autism
organizations to launch an awareness
campaign about this issue, I was surprised
at the responses received from teachers
and aides. Some almost condoned the
abuse, citing a lack of resources in the
classroom and the need to protect
themselves from aggressive children.
Others wrote to tell us about parents who
abused their students, essentially asking
why we weren’t writing about that. Others
suggested parents are lying about cases of
abuse as a means to sue for monetary gain.
The more appropriate responses came from
compassionate special ed teachers writing
to voice their disgust at the increase in
abuse. Most of these wonderful teachers
went into special education because they
are compassionate, dedicated people.
ISSUE 33 2009 They work to prevent the need to restrain
children using creative tactics and common
sense. They should be held up as the
example.
Lawmakers working to protect our
children include Congressman George
Miller (D-CA) who serves as chairman
of the Education and Labor Committee.
He called for hearings on restraint and
seclusion in schools. Parents like Phyllis
Musumeci of Families Against Restraint
and Seclusion and Sharon Boyd of Parents
In Action have worked for years to change
the laws and create awareness so parents
can protect their children. Also, advocates
like NAA President Wendy Fournier worked
locally to get cameras in special ed school
buses. Organizations like the Disability
Rights Network, APRAIS, and NAA work to
educate the public and create regulations.
Signing up for their action alerts, and
forwarding alerts to friends, will go a long
way.
On several occasions, my 6-year-old
was dragged into a small room and
locked inside for his “poor choices”
because the staff did not know what
to do with him. At first, the special ed
“experts” were able to convince me
that a brief time alone would help him
calm down and rejoin his class. But
guess what? It didn’t cure him of his
autism and, in fact, made things much
worse. So when an “expert” at your
local school does something to your
child you just feel is WRONG, don’t go
along with it. They don’t want to treat
your child with dignity or give him any
help he needs if it COSTS them money
or staff time. Mrs. C
classroom, stiffer penalties for first-time
offenders, stronger background checks,
and a better reporting system should all be
in place.
Most importantly, universal training
should be made available to every staff
member in every district. It should cover
dos and don’ts, and educate staff about
the unique challenges our children face. It
should define the line, define the different
types of restraint, and describe how
restraint can kill a child. It should outline
specific cases of abuse, how children were
tormented, and how they died. It should
cover de-escalation methods in detail and
empower teachers and aides to know how
to respond appropriately to meltdowns
or rule breaking. What training shouldn’t
be is a long, cold laundry list of rules with
no meaning. It should be an emotional,
factual, informative, and hands-on learning
experience. Why something like this isn’t
universally available, I don’t know.
I am the mother of a special needs
child who was abused in a public
school. His teacher locked him in the
bathroom after he soiled his diaper.
He was cognitively 18 months old
although he was 3 years old at the
time. The school did nothing and
chalked it up to “old-school teaching.”
He was significantly delayed in most
all areas. I have filed a civil suit
against the school after nothing was
done. This teacher is still teaching.
Jenny
WHAT OUR CHILDREN NEED
TO BE SAFE IN SCHOOLS
Along with restraint and seclusion
regulations and cameras in every special ed
69
ADVOCACY
WHAT FELLOW TEACHERS
AND AIDES CAN DO
In early July, I received a nice e-mail from
a Dr. Roy Leonardi, a special education
professor in Connecticut. “I thought it
may be useful to see what I am teaching
graduate students,” he wrote. After all the
horrendous stories and bitter responses to
our anti-abuse campaign, it was refreshing
to open his guidelines. I’ll share just a few
with you:
As a professional it is my responsibility
to de-escalate a child using verbal
intervention.
I am the adult who is trained, and I
am the adult who models appropriate
behavior.
Once the adult puts hands-on it is a
signal that the adult has lost control of
the conversation.
If you are not trained in restraint,
you shouldn’t use or participate in a
restraint.
If you use a restraint, it should be
documented.
If you are restraining a child on a
regular basis, you are doing something
wrong.
An adult does not have the right to
grab, pull, drag, or restrain a child
during a de-escalation, unless there is
imminent danger of physical harm.
During a de-escalation, only one adult
talks calmly to a child.
If an adult cannot maintain control,
they need to pass the conversation
to another adult who is in a state of
calmness. Usually, escalation happens
when an adult escalates with the child.
An escalation of events is generally
caused by an adult who is not properly
trained, forgets their training, or should
not be working with children.
Many restraints are little more than
assaults on weaker people.
Many restraints are little
more than assaults on
weaker people.
70
THE AUTISM FILE | www.autismfile.com Until solid, universal training is available,
many teachers may have to search for
guidelines like Leonardi’s, as I know many
already have.
Lastly, if you’re a teacher or aide who
witnesses anything that makes you
uncomfortable, report it. Write a letter
to the parents of the child who is being
mistreated or alert school administration.
Too often colleagues wait months, even
years, to report abuse after they’ve
relocated to another school. At the time
of this writing, a teacher’s aide in my
son’s school was arrested for slapping his
disabled student. He also force fed the
child, among other things. It turns out
several staff members came forward to
report this misconduct, which led to his
removal. Bravo to them for not waiting.
Child rights advocate Teri Arranga put it
this way: “Another day of delay is another
day of danger.”
To take action on this issue, please
visit nationalautismassociation.org. For
related questions or comments, please
e-mail lori@nationalautism.org.
THINGS TO LOOK FOR
Bruises
Escalated behaviors
Anxiety issues
Increased self-injurious behaviors (SIB)
Fear of going to school
Fear of a particular teacher, aide, substitute, or staff member
Bed-wetting
Toileting regression
Sudden fear of being touched
Increased social anxiety
Crying for unknown reasons
Sleep disturbance
Not wanting to be alone
Loss of appetite
Loss of interest in things he or she used to enjoy
Phobias
Phyllis Musumeci, Families Against Restraint and Seclusion
TAKE ACTION TO
PROTECT YOUR CHILD
Download a sample “no consent”
letter at aprais.tash.org or
nationalautismassociation.org.
Get informed by reading
the GAO report on restraint
and seclusion. Download at
nationalautismassociation.org.
Visit sites such as familiesagainstrestraintandseclusion.blogspot.
com and aprais.tash.org
If you are in the following states, you
have no state regulations:
Wisconsin, Wyoming, Vermont,
South Carolina, South Dakota, North
Dakota, Oklahoma, New Jersey,
Nebraska, Mississippi, Missouri,
Kansas, Kentucky, Louisiana, Indiana,
Idaho, Florida, Georgia, Arizona.
ISSUE 33 2009
ONE MOM WORKING HARD TO CHANGE THE RULES
My advocacy work began when my own son was repeatedly
restrained in public school and put in isolation because of his
behaviors that are part of his disability. We pulled our son out
of public school in 2005 because we thought he was having a
breakdown. One and a half years later we found out about all the
restraints. We were never notified by phone or in writing.
When I was told by my school district that what happened
to my son was an isolated incident, I decided to look
into the issue of restraint and seclusion myself and
was shocked at what I found out. Through a lot
of research and networking, I found more than
100 parents in Florida who were having the same
problems of restraint, seclusion, and aversive
methods being used on their children in the public
school system. Children with autism were subjected
to this kind of treatment the most. One thing we all
had in common besides restraint and seclusion is that
we all had turned to our Florida Department of
Education, governor, and various government
groups, and we all found out very quickly
that there was no help.
ISSUE 33 2009 I have spent the last three years working with parents to bring
awareness to this problem in our schools and also researching
the dangers of using restraint, seclusion, and aversive treatments
on children with disabilities all in the name of behavior
treatment. I have also been working on legislation as well as
regulatory reform in Florida and testified at a Washington, D.C.
press conference in early 2009.
Parents who have children who have been subjected
to restraint and seclusion believe that this kind
of aversive treatment is undoing everything
learned in early intervention programs. Restraint
and seclusion should no longer be viewed as
treatment options but rather as treatment
failures because they risk lives, escalate
behaviors, and inflict emotional and physical
trauma.
Phyllis Musumeci is the founder of
Families Against Restraint and Seclusion
and lives in Florida with her husband,
Gianni, and 17-year-old son,
Christian.
71
LIVING WITH AUTISM
By Laurie Mawlam
Laurie Mawlam is the executive
director of the Autism Canada
Foundation and holds an
Honours Bachelor of Commerce
from Carleton University, Ottawa,
Canada. She is very passionate
about her work, which includes
empowering, educating,
supporting, and advocating
for individuals with autism and
their families. Laurie’s devotion
comes from being the mother
of three boys, one of whom
was diagnosed with autism.
After three years of an intensive
home-based Son-Rise Program
and numerous biomedical
interventions, her son lost his
behavioral diagnosis of autism.
F
riendship is a truly wonderful thing:
a unique blend of affection, loyalty,
love, respect, trust, and loads of fun.
Isn’t this something we all strive for? Sadly,
children with autism are either unable to or
struggle to develop these deep, meaningful
relationships, especially with their peers.
This magnificent story is about six very
special eighth-grade boys, one of whom
is diagnosed with autism. The relationship
these boys share is the essence of true
friendship and is an example to everyone.
Samuel Raffoul was diagnosed with
autism when he was 2 years old. He
didn’t reach developmental milestones
like other children. His limited language
had disappeared and his connections with
others grew more and more challenged.
Despite these differences, when the
time came to enroll their son in senior
kindergarten, his parents would forge
ahead and choose a local Catholic School
for him to attend. Sam, as his friends
call him, was assigned Laurie Cook as his
educational assistant (EA). She would
stay with him throughout his elementary
and middle school years and have a huge
influence on his success at school.
In reflecting over the years, Cook’s
infinitely positive outlook, along with her
nonjudgmental and compassionate way
with Sam, clearly had an impact on him
and his fellow students. Five of Sam’s
classmates, all athletic and considered the
“cool kids,” were different from the rest,
just like Sam was different in his special
way.
Often “cool kids” are blessed with the
status that allows them to bypass the
efforts required to fit in, but this group
went against the grain and actually spent
an extraordinary amount of free time and
energy trying to fit into Sam’s world. They
used imaginative methods that the young
often create due to their less complex
view of the world. They learned to see him
in a reality beyond the barriers that the
With an increasing knowledge of autism, the boys became
more and more comfortable with Sam. They began to view
him through a different lens, which spurred them to see his
mannerisms as part of who he was.
72
symptoms of autism can erect. This effort
had a resoundingly positive outcome on
Sam, his family, and the greater community.
“Many of us were curious about what
autism was and how Sam related towards
things in life,” Peter says. Sam’s friends
would question why he flicked his fingers
and got overwhelmed with certain
situations. Cook would wisely explain that
Sam did these things to look after himself,
just like we might choose other habits.
With an increasing knowledge of
autism, the boys became more and more
comfortable with Sam. They began to
view him through a different lens, which
spurred them to see his mannerisms as
part of who he was. They even began
experimenting by trying out some of his
different gestures. They explained the
reason behind joining Sam was to try
to comprehend the sensations Sam was
feeling as he performed them. This led to
interesting discussions among themselves
and more and more questions about autism
and Sam. Christina, Sam’s mom, was often
called upon to explain Sam’s autism to this
knowledge-hungry group of young men.
Over time, they concluded that Sam wasn’t
all that different from other kids, and they
were determined to let everyone in on this
newfound knowledge.
“Sam just had a harder time reacting
towards things in life,” Steven says. Cook
encouraged the boys to continue to get to
know him and understand him better. And
they did just that. They learned to decipher
the clues that showed he was interested
in their friendship, even though Sam may
have appeared to show the exact opposite.
They learned to recognize the little signs
that revealed his excitement to be with
them and how much they meant to him.
Peter, Bakous, Steven, Ahmad, Johnny,
and Sam all share similar interests and
mutual respect. This special bond between
all six boys is incredibly touching and
inspiring.
When asked to share some of their fun
times, their faces light up with genuine
excitement. Bakous eagerly speaks up,
volunteering to go first. Unable to suppress
the giggles before he gets a word out, he
shares: “When Mrs. Cook is away and Sam
has a substitute EA, he is so funny. He will
test the new EA and do things like motion
that he needs them to tie his shoes when
ISSUE 33 2009 Sam’s family (Christina, George, Sam, and younger brother Nicholas)
he totally knows how to tie his own shoes.
It’s his way of being silly.”
Examples keep pouring out. Ahmad
recalls, “I remember the first time we went
to the greenhouse at Sam’s house. It was
an awesome experience! We got to see an
entirely different side of Sam. He wasn’t
shy at all. He acted just like one of us, to
the point none of us realized that we were
with a boy who had autism.”
Johnny adds, “Swimming in Sam’s pool
was also an awesome experience! We
couldn’t believe how fast Sam could swim!
He could swim faster than Steven and he
has had a pool since he was born!”
While Sam’s parents were hesitant at first
to invite the boys into their son’s life, the
hesitation was short lived. Inviting a single
child to one’s home when uncertain of the
outcome is one thing; having five over was
understandably daunting.
It was apparent to all very quickly that
an extraordinary, authentic camaraderie
had developed between the boys. Today,
Sam’s parents attribute it to two things:
the continuous encouragement from Cook
to nurture a friendship with Sam over all
the years and the boys’ open-minded,
accepting personalities that allowed Sam to
enter their lives. The boys’ solid Christian
and family beliefs were the foundation to
opening their hearts.
This was the beginning and would
continue to be a win-win relationship
for everyone involved. The gains for
the Raffoul’s were undeniable, but this
group of young men benefited from an
experience that also allowed them to shed
any inhibitions they carried. Society’s
youths often receive messages that restrict
them from showing their enthusiasm for
simple pleasures, but with Sam they could
reveal their true selves and just enjoy the
simplicity of being young.
Peter speaks up next with a grin from
ear to ear to share a story of his own. Peter
recalls the satisfaction of being a player in
teaching Sam how to ride his bike. “It was
in grade seven and Sam still had training
Society’s youths often
receive messages that
restrict them from showing
their enthusiasm for simple
pleasures, but with Sam
they could reveal their true
selves and just enjoy the
simplicity of being young.
73
LIVING WITH AUTISM
wheels on his bike. Christina, his mom, told
us they had been trying to teach him how
to ride it for years.” The boys suggested
that Sam needed a bigger bike. They
believed he could do it because they could;
it was all in how they viewed Sam.
All the boys encouraged by telling Sam,
“Just watch us and try what we do and you
will get it. Don’t be afraid, you won’t fall.”
Sam was apprehensive at first, but by the
end of the first day he got the riding and
steering part down – though he was still
dragging his feet to stop. By day two he
showed more confidence and was using the
hand brakes a lot more. By the end of the
week he had mastered riding his bike. Peter
proudly remembers that bike ride Sam
made along with his friends around the
block with no adults. “We knew he could
do it and he would like it once he got it,”
Ahmad adds.
One of the highlights for all the children
in grade eight was the end-of-year class
trip. It was something everyone looked
forward to and dreamed about. This was
their year, and the class had planned a
camping trip to the Muskokas north of
Toronto, which was hours away from their
town of Leamington in Southwestern
Ontario. All five boys recalled how
upsetting it was thinking about the
possibility of Sam not going. It would be
a big step for Sam to be away from home,
hours away, in an environment he wasn’t
familiar with. But the boys had a plan.
Months before the trip, they started
telling Sam everything about it. Peter recalls
how they would all get excited when telling
Sam about the long bus ride, sleeping in
the cabins, and doing all the fun things
that come with a camping trip. At the same
time, they started working on Sam’s parents
to gain their approval for the trip.
Bakous recalls, “We could tell Sam’s
parents were a little nervous about it, but
we knew he could do it and he would have
fun if he could go.” The thought of leaving
one of their best friends behind was
unbearable.
While the boys continued to talk about
the camping trip regularly, a practice
sleepover was planned in the basement of
Sam’s grandparents’ house a few weeks
ahead of the trip. This would be the test
run before they got hours away from their
hometown in a new environment. The boys
recall that night with grim looks. Sam was
upset that night and you could tell he really
wanted to go home. His parents’ house was
only 10 minutes down the road.
Steven wisely shares, “We let him
have his space to work through it and
kept telling him it was OK and that if he
could stay we would have fun.” While the
evening wasn’t easy, Sam did face and
overcome the challenge of having his first
solo overnight away from home, and the
boys got what they wanted. Sam would be
joining them on their highly anticipated
eighth-grade camping trip.
Busting at the seams, the boys go on
to describe one of the highlights of the
trip: their canoe ride. Sam wasn’t eager to
try canoeing. Cook jokingly offered Sam a
cinnamon bun if he went for a canoe ride
with his friends. Sam shook his head “no.”
Cook raised the ante to two cinnamon
buns. Again, Sam shook his head “no.”
Cook finally gave in and asked what it was
going to take. A smirking Sam replied,
“Four cinnamon buns.” Cook relented,
thinking what a ham Sam was!
With Sam ready to participate in his first
canoe ride, all the boys put on their life
jackets. Peter, Bakous, and Johnny set out
in their canoe first, coaxing the others to
follow them. On shore, Steven took the
front of the second canoe and Ahmad the
back, leaving the middle spot for Sam.
Ahmad recalls the anxiety on Sam’s face.
“You could tell he really didn’t want
to do it, but he was going to try.” Sam’s
anxiety quickly turned into outward bursts
of laughter as his canoeing partners’ oars
lightly splashed Sam with every stroke.
“He was really excited,” Bakous says. “You
could hear him laughing really loud.”
Steven continues in disbelief: “We got
out into the middle of the lake and Sam
stood up in the canoe and started jumping
and waving his arms. He was laughing
really hard. I was afraid the canoe was
going to tip!”
While the boys never knew for sure what
Sam intended by carrying on in the canoe,
they suspect he was either really excited or
just wanted to have fun by scaring them a
bit, which he succeeded in doing. The trip
was marvelous for everyone, and memories
like this will stay with them forever.
This past June all the boys graduated
from eighth grade. Sam attended the
graduation mass and awards ceremony
with his friends by his side. When the
awards continued to drag on, Sam tapped
Peter on the shoulder and said, “I want
Portuguese Club.” Peter calmly told Sam
he was doing great and it was almost over.
Sam was ready for the next part of the
evening to be held at the Portuguese Club
– supper, more presentations, and a dance.
“Everyone had their families at the
Portuguese Club,” Peter recalls. “But Sam
had the most. He had 21 people there for
him.”
Bakous interrupts, “You’ve got to hear
this. At the presentations everyone had a
baby picture with no name. Once the baby
picture appeared, the student’s graduation
picture with their name would follow.
Everyone clapped at every picture, but
when Sam’s picture came up everyone was
screaming ‘Sam!’ and he got the loudest
applause. It was great.” Sam sat there,
surrounded by his family and friends,
taking it all in.
“He knew he was important,” Peter
adds.
Sam was proud, but these boys were
perhaps even prouder to call themselves
Sam’s friends.
While the boys and Cook have been
a godsend to Sam and his family, Sam
has had an equally influential impact on
their lives. When the boys are asked what
qualities about Sam make him so special,
it’s unanimous: Sam understands that
While the boys and Cook have been a godsend to Sam and his family, Sam has had an
equally influential impact on their lives. When the boys are asked what qualities about
Sam make him so special, it’s unanimous: Sam understands that friends and family are the
truly important things in life.
74
While befriending a child with autism may require students
to step out of their comfort zones initially, it is important to
remember how often we ask children with autism to step
out of theirs.
1. Sam wearing Muskoka Woods T-shirt
2.Grade 8 graduation (L to R - Peter, Bakous, Sam, Johnny, Steve, Ahmad)
3.Sam at graduation with Mrs. Cook, his Educational Assistant
4.Sam’s canoe ride (Steve at front, Sam in middle, Ahmad at back)
5.Sam riding bike on grade 8 trip to Muskoka Woods
friends and family are the truly important
things in life.
“Sam doesn’t care if his clothes are dirty
or what he looks like,” Johnny explains.
“He teaches all of us that possessions are
not important. Sam always has a smile
on his face and always has something
interesting to do.”
In many ways, Sam is a role model for
everyone. Steven sums it all up, speaking
with maturity beyond his 13 years: “Sam
is a normal kid. Autism is just part of who
he is.”
Recently, Peter, Bakous, Steven, Ahmad,
and Johnny spoke to Sam’s brother
Nicholas’ class about their rewarding
relationship with Sam. They want to inspire
another generation to nurture a special
friendship with Sam’s brother. Nicholas
was also diagnosed with autism. In their
presentation to the class, the boys shared
their wonderful experiences together
and explained how special it was to have
Sam in their lives. They really wanted to
encourage others to be able to have the
same experience they had. The boys were
also honest and talked about many of the
things that went wrong, but they offered
strategies from years of experience on
how to overcome any obstacles. Their
ISSUE 33 2009 presentation touched all who attended,
and a group of boys have now reached out
to befriend Nicholas.
Sam’s parents wish they could express
the blessing that this relationship has been
for their family, but words to truly convey
this have yet to be created.
“More than teachers, programs, and
special classes, these friends have shown
my son the unique joy there is in life
when you have friends,” Christina shares,
“friends who express their pride in his
accomplishments, no matter how small,
who show understanding, as they know
how hard he works to gain what he has
achieved. They show compassion when
he is upset when others may distance
themselves from him because he is unable
to communicate his feelings in ways that
are familiar. The boys never give up on him
when it is hard, but try again and again.
This exceptional group of young men
have been more than good friends to Sam;
they have been role models, brothers, and
guardian angels.”
The boys’ simple acceptance of Sam
has enriched his life beyond measure, but
being like them (a good friend) Sam has
returned the favor.
It is my hope that this story will have
an impact similar to that of the boys’
presentation. I hope it will touch the hearts
of other children and inspire them to reach
out and befriend a child with autism. While
befriending a child with autism may require
students to step out of their comfort zones
initially, it is important to remember how
often we ask children with autism to step
out of theirs. The rewards are great, and I
know five young boys whose lives will be
richer and more complete forever more
because they did such a thing.
75
Can Help Spectrum Children
with Visual Dysfunctions
By Jeffrey Becker, OD
Jeffrey Becker, OD, is the
director of vision services of the
Neurosensory Center of Eastern
Pennsylvania in Kingston. Dr.
Becker has been practicing as
a primary care optometrist and
specializing in vision rehabilitation
since 1983. He is a member of the
Neuro-Optometric Rehabilitation
Association, a Defeat Autism
Now! physician, and a Certified
Neurosensory Clinician. Becker
was also selected as one of
America’s top optometrists in 2007
by Consumers Research Council
of America out of Washington
D.C. Dr. Becker teaches vision
rehabilitation courses to students
pursuing doctoral level degrees at
Misericordia University.
Jeffrey Becker recently presented
at the Autism One 2009 Conference
held in Chicago. His lecture
was titled “Seeing Is Believing:
Sight, Vision and Autism.” In the
presentation, he discussed how
visual processing affects children on
the autism spectrum. In his 24 years
of clinical and research experience,
Dr. Becker has examined and
treated over 3,000 neurologically
impaired patients including children
and adults with autism spectrum
disorders. Please visit:
www.keystonensc.com
76
THE AUTISM FILE | www.autismfile.com DG,
an 8-year-old boy, sat in my
examination chair after his
mother had completed all the appropriate
intake forms as recommended by the
Defeat Autism Now! protocol. She now
tried to control her son as he attempted
to touch the bright instruments in my
examination room. The paperwork
indicated that DG had been diagnosed
with autism spectrum disorder (ASD)
at 2 years old. He was in and out of
different programs and, at one time,
was labeled as dyslexic. The interview
proceeded typically, but his mother
was not quite sure why she was here
with her son, even though an observant
occupational therapist had suggested she
make an appointment with me. She said,
“I’ve had my son’s eyes checked before
school every year and he has always
had 20/20 vision.” My comprehensive
neurosensory examination, along with
the functional and developmental vision
examination, indicated that the other
eye care specialists were correct. DG did
have 20/20 visual acuity. But they had
apparently not assessed another aspect
of vision that is very important (Holmes,
et al., 2008). DG had significant eye
tracking and eye focusing problems,
reduced convergence, difficulty with depth
perception, and vestibular inaccuracies.
At this point, I explained to DG’s mother
the difference between sight (acuity)
and vision. Sight is the ability to see a
certain size object at a certain distance.
The standard means to assess acuity was
conceived by Herman Snellen in 1862.
Since that time, we have referred to
normal sight as 20/20. The top number
indicates the distance of the observer from
the acuity chart and the bottom number
the size of the letter being viewed. All
this really means is that a person can see
a certain size letter at a certain distance.
This terminology is, of course, important
for many aspects of our lives. But even
more important to our children with ASD,
like DG, is functional/behavioral vision.
Deficits with their visual systems can be
very disabling.
“Vision” refers to how the visual system
coordinates function between the two
eyes and the brain (Cohen, et al., 1988).
We ask questions like, “Do both eyes
perceive the same image at the same
time?” “Do both eyes move in unison?”
“Do both eyes have equal focusing
power?” “Do both eyes do all these visual
requirements easily, fluidly, and for an
extended length of time?” If the answer is
“no” to any one of these questions, then
a functional/behavioral vision problem
exists – one that can result in visual
“stimming” (e.g., a child waving his hands
back and forth in front of his eyes), poor
concentration, poor fine and/or gross
motor control, emotional outbursts, and
a preference for performing only certain
near point tasks, such as continuously
watching a hand-held video player at a
very close range or wanting to hold the
player at only one angle.
Children with ASD, like DG, appear more
likely to have visual functioning disorders
than the general population (Taub, 2007).
When doing the intake form for DG, it
was noted that he disliked doing any near
ISSUE 33 2009
point tasks. He preferred to run randomly
around the room and pick items up along
the way. He would briefly look at them
and then put them down quickly when he
saw another item to view and examine for
a very short period of time. This behavior
was repeated consistently. His mother
noted that she felt DG was very smart
because he could easily memorize songs
and verses. (My experience has been that
ASD children are very smart but are unable
to utilize their intelligence in a positive
manner that we all expect.) He would not
engage in eye contact and would attend
to objects out of the corners of his eyes.
Instead of moving his eyes, he turned his
head to see objects.
DG’s evaluation, which took more than
two hours, indicated visual functional
deficits that needed to be remedied
for DG to be able to visually function
in the world. This two-hour evaluation
includes evaluation with the Sensory
View® diagnostic system (NeuroSensory
Centers of America, 2009). This system
assists in the evaluation of myelin health,
eye movements, balance, proprioception,
and dynamic visual acuity. After these
tests are done, an additional evaluation
is done to assess depth perception, visual
suppressions, visual focusing, ocular
health, and the ability of the eyes to
work together. These tests, which are
done by an eye care specialist trained
in these procedures, need to be done
without the use of the phoropter, an
instrument normally utilized in routine eye
examinations.
THERAPY PROGRAM FOR DG:
Vision therapy is done in a sequential
manner that mirrors normal developmental
processes. This allows the child to most
readily relearn the visual skills that were
lost or to learn those that were never
developed. It is therefore necessary
to start with very easy tasks and work
towards more difficult tasks. The Piagetian
approach to development indicates that
this is the best way to remedy visionrelated problems.
Vision therapy can be done in an office
by a trained therapist, in an outpatient
rehabilitation center, or at home. Vision
rehabilitation to correct most oculomotor,
eye focusing, and eye deviation deficits
ISSUE 33 2009 Children with ASD, like DG, appear more likely to have visual
functioning disorders than the general population (Taub, 2007).
A patient with special 3-D goggles
to help with depth perception
typically continues for six to eight months
when done two or three times per week.
Treatment also requires home participation
for 30 to 45 minutes per day for five days
per week on an outpatient basis. This
does not mean that the rehabilitation
cannot be concluded earlier (or later)
than this prescribed time. Program length
is dependent on the child’s participation
level and attendance. Due to DG’s
particular needs, I began his therapy
program in my office. The eye movement
exercises I prescribed consisted of
computer-based therapy as well as handheld therapy techniques. Both techniques
have the same end result, but I have found
that the computer techniques seem to
work more quickly and the results are
more consistent in nature than those using
the hand-held therapies. The disadvantage
of the computer therapies is that many
children with ASD have difficulties sitting
at the computer for any length of time,
thus making the sessions more frustrating
for them. Therefore, we incorporated both
therapy techniques with DG.
The computer programs we have had
success with come from a company in
Gold Canyon, Arizona (HTS, 2009).
The programs can be tailored for each
child and his or her skill level. We can
incorporate therapies for all visual deficits,
including gross motor, fine motor,
vestibular, and focusing issues, into this
program. The computer programs allow
easy progression for each child and can be
modified when a child has difficulty with
certain tasks. I do this at least two times
per month but usually more frequently,
making sure that the child is meeting the
proper goals.
DG progressed very well through the
eye movement therapies and even seemed
to enjoy them. He was rewarded with
stars when he met the goals that we set
for him. He frequently came into the
therapy room and started to turn on the
computer before the therapist. This part
of the therapy, which may be the longest,
required 10 weeks to show significant
improvements.
Once we were able to achieve equal eye
movements (having both eyes function
so that each eye has the ability to move,
fixate, and track at the same time and
speed), attention was turned to the eye
focusing problems. We used multiple
techniques with DG. An accommodative
flipper is a hand-held device that has
equal and opposite powers in the lenses,
and this was used to control and improve
DG’s eye focusing. This technique was
incorporated into the eye movement
therapies because we knew that DG liked
doing these exercises, and adding the
flippers did not trigger any behavioral
problems. DG did not have any problems
Flipper and eye patch
77
VISION REHABILITATION IS NOT SOMETHING THAT IS DONE TO A PATIENT OR
TO A PATIENT’S EYES. IT IS RE-EDUCATION AND RELEARNING OF VISUAL SKILLS
THAT A PATIENT HAS NEVER GAINED NOR LOST.
using the flipper and wanted to hold it
himself at times. He progressed with the
flippers and eye movement therapy at a
steady pace over a two-month period,
meeting all the goals set for him.
The biggest stumbling block to therapy
(and this happened to DG) occurs when
a child falls ill with a cold or flu. This is
not an unusual circumstance and can
result in a setback in the therapy program
that lasts for several weeks until we can
get the child back into the program on a
regular basis. An important factor in all
therapies is consistency, including with
respect to therapy day, appointment
time, and therapist. Children with ASD, in
general, need consistency for any type of
activity to be willing to participate. Also,
having the same therapist, a quiet room,
and engagement in therapy on a one-onone basis is a must for children with ASD.
The third phase of DG’s therapy was
to address his convergence and depth
perception problems. Although they
are two separate processes, they can be
addressed together. The computer-based
therapy required DG to wear a special
pair of glasses that created a 3-D image.
Reluctant to wear them at first, our
therapist also donned a pair to persuade
DG to use them. DG wanted to imitate
the therapist so he then put on his pair of
special glasses and together they worked
on his convergence and depth perception
problems. At a rate of two sessions per
week, DG reached his goals in seven
weeks for both convergence and depth
perception.
NEXT STEPS:
Once DG’s visual skills progressed to
the point where he could perform fine
and gross motor tasks, one more focus
of therapy remained. This is called an
“integration phase” and helps with any
vestibular deficits the child with ASD
may have. Many children with ASD have
vestibular deficits, making it difficult
for the child to remain stationary or
78
THE AUTISM FILE | www.autismfile.com maintain a vertical position. To get a
sense of this problem, recall the sensation
of having ridden a merry-go-round at
the playground. When it stopped, you
likely felt unbalanced, moving in an
uncontrolled manner and in various
directions. Children with ASD may move
in such ways on a regular basis. Many
of them have small, inaccurate eye
movements called nystagmus. If so, they
may feel as though the room is moving
around them, making the afferent
sensory information contradictory and
confusing. The result may be a child who
engages in seemingly senseless wholebody movements or even drops to the
floor (Allison, et al., 2007; Trachtman,
2008).
The integration phase of therapy
teaches the body and brain to work
together, overcoming inappropriate
vestibular influences and enabling these
new skills to become natural. These
are learned activities and need to be
incorporated into the child’s daily routine
to embed them so the child can use them
with every waking moment. Integration
therapy is accomplished with balance
boards, trampolines, balance beams, ball
catching and rolling, and cognitive skills
training. In DG’s case, one of the tasks
that we had him perform was to count to
10 backwards, then call out the alphabet
at the same time as he engaged in balance
exercises and eye therapy programs.
We repeated all the therapies that
have been described while DG was doing
gross motor activities. By doing this, his
brain had to incorporate all the new skills
developed so that functioning could be
DG’s mother was completely
amazed by her son’s progress.
His eye contact improved, his
visual stimming significantly
decreased, and his school
performance accelerated.
smooth and coordinated. It can take up to
another eight to 12 weeks for this phase
of the therapy. Many children report it to
be the most enjoyable part of the program
because it involves movement. With DG, it
took five weeks and he was able to reach
all of his goals while engaging in gross
motor and cognitive skills.
FINAL OUTCOME:
DG’s mother was completely amazed
by her son’s progress. His eye contact
improved, his visual stimming significantly
decreased, and his school performance
accelerated. His teachers wanted to
know what his mother had done to get
him this far. He was a more pleasant
child according to what others told DG’s
mother. Most importantly, DG now knows
he can do these tasks and has improved
self-esteem.
Once the in-office rehabilitation
program is completed, a reduction in
rehabilitation time is given to the child
and a phase-out program is begun for
several months. This is done to monitor
and maintain all visual skills that are
learned and to make sure the child has
adapted adequately to the new visualfunctioning environment.
As a final step, DG was given a
maintenance vision therapy program of
home exercises to follow and is checked
every three months in the office to
confirm that he has not regressed. The
home maintenance program can be a
computer-based program (HTS) or the
procedures that are outlined in the next
section. It is very important to do this
program with the understanding that
these visual skills have been learned and
can easily be unlearned if they are not
reinforced on a routine basis at home.
VISION REHABILITATION IS NOT
SOMETHING THAT IS DONE TO A
PATIENT OR TO A PATIENT’S EYES. IT IS
RE-EDUCATION AND RELEARNING OF
VISUAL SKILLS THAT A PATIENT HAS
NEVER GAINED NOR LOST.
ISSUE 33 2009
OCULOMOTOR, EYE FOCUSING, AND CONVERGENCE
PROCEDURES THAT CAN BE DONE AT HOME
3. Observe your child’s ocular movements
as the ball swings in and out from his or
her face. This should last for one minute.
If your child wants to turn his or her head,
try to hold his or her head in place while
your child is moving his or her eyes.
4. After the ball is at rest, pull the ball to
the side of your child and let go so the
ball swings left to right and right to left
for one minute. Observe your child’s eye
movements laterally.
5. When the ball is at rest, begin by
throwing the ball in a circular motion
clockwise. Instruct your child to follow
the ball with his or her eyes for one
minute.
Proper setup for tracking exercise
OCULOMOTOR EYE MOVEMENTS:
Visual Tracking
Visual skills emphasized are pursuit eye
movements, tracking skills, and eye-hand
coordination skills. Pursuit eye movement
and tracking skills are important for
effective near point tasks, eye contact,
and the development of good reading
skills. Eye-hand skills are important for
writing, eating, and the knowledge of
directionality and laterality.
Ball Rotations Procedure is a simple
but useful task used in the treatment of
oculomotor deficits.
The equipment needed is a ball with
letters written around the center of the
ball or a picture that your child may like,
a string, and a hook. Hang the ball (or
picture) from the ceiling and adjust the
height to his or her nose level.
Follow these procedures:
1. Place your child a comfortable distance
(approximately 3 to 4 feet) from the
hanging ball. This can be done lying down
or sitting up.
2. Bring the ball within one inch from
the child’s nose, and instruct the child to
follow the ball with just his or her eyes.
Let go of the ball.
ISSUE 33 2009 6. When the ball is at rest, begin
by throwing it in a circular motion
counterclockwise. Tell your child to follow
the ball with his or her eyes for one
minute.
7. Continue this daily for three minutes
several times per day. As you do this your
child will begin to improve his or her eye
movements.
EYE FOCUSING SKILLS:
The near/far chart is used for eye
focusing. Cut out pictures that your child
likes and put them on cardboard and
place them 6 to 10 feet away at standing
height. Make copies of these and shrink
them and place them on cardboard to be
held in front of the child about 12 inches
away.
Have your child look at the first picture
on the distance chart, and then have
him or her find the same picture on the
close chart. Continue repeating this and
increase the speed. This will allow his or
her eyes to quickly focus at distance and
near. Make a game of it and make sure
that the pictures are of interest to him
or her. Always change the pictures and
at times hold the close chart at different
rotations so that he or she still has to
recognize the picture even though it may
be oriented in a different position.
CONVERGENCE TRAINING:
Below you will find a useful procedure in
the treatment of many vision problems,
especially convergence insufficiency and
depth perception.
Obtain a piece of white string 10 feet
long, with three movable color beads
placed on it. (This is easily purchased at
any hobby or craft store.)
Normally, one end of the string is
placed on a distant object such as a
doorknob. Place one index finger over
the other end and hold it to the tip of
the nose. The first bead is placed at a
distance of 16 inches from the nose, the
second bead at 5 feet, and the last one at
about 9 feet.
When the child looks at the first bead,
he or she should see one bead with two
short strings leading toward it and two
longer strings leaving it. On the two
strings which leave the bead there will be
– to the child’s perception – two beads at
the 5-foot distance and two more beads
at the 9-foot distance. Next, have him or
her look at the second bead and again the
subject should see two strings entering
the bead and two strings leaving it,
making a large “X.” At this position there
will now be two beads – to the child’s
A patient displaying proper setup for
convergence training
79
Setting up a convergence string
What a patient is supposed to see looking at
the first bead if the eyes are lined up
perception – ahead of (at the 16-inch
distance) and two behind – to the child’s
perception – (at the 9-foot distance) the
single bead at 5 feet. Finally, look at the
bead furthest from the nose. The child
should notice the two strings making a
“V” toward the bead and crossing exactly
at the bead. The beads at the 16-inch
and 5-foot distances will appear to be
double. The doorknob or whatever object
the string was tied to may also appear
doubled if there is adequate separation
between it and the last bead.
will tend to perceive objects being farther
away than they actually are.
The object of this training device is
to be able to have the child see the
strings cross exactly at the bead he or
she is looking at without suppression at
any distance. Everything in front of and
behind this bead should be doubled. If
not, have the child find some spot on the
string where it is possible to achieve the
proper image (strings crossing exactly
at the bead). Many times this is a closer
bead for those with over-convergence
posture and a farther bead for an underconvergence posture. From this point he
or she will slowly slide the bead closer
or farther away, maintaining proper
alignment and fusion. The goal is to
expand the range from this point until
normal fixation can be obtained at all
distances.
The next goal is to be able to jump
quickly from one bead to another,
achieving proper fixation each time.
The position and separations of the
beads should be varied during this part
of the training. Once this has been
NOTE: If only one string is seen, the
subject is suppressing one eye, which
means that the brain is not responding
to that image coming from the eye. If
this is the case, the child has to do a lot
of spontaneous blinking to relieve this
situation. If the strings seem to cross in
front of the beads, this is referred to as
an “over convergence” and the child will
tend to perceive things being closer than
they really are. If the strings seem to
cross behind the beads, this is referred to
as an “under convergence” and the child
Almost all individuals are born with the potential for good
eyesight. But vision, the ability to understand and perceive
what is seen, is developed and learned.
80
THE AUTISM FILE | www.autismfile.com Almost all individuals are born with
the potential for good eyesight. But
vision, the ability to understand and
perceive what is seen, is developed
and learned. As our children grow,
we tend to believe that their visual
abilities develop accordingly. New
findings and research indicate that
this is not always the case, and 25
percent of children in a classroom may
have undiagnosed visual skills deficits
that affect the learning process. In
addition to these undiagnosed visual
deficits, neurosensory disorders can
also linger in this same population.
How are vision and sight related?
Both require concurrent development
in order to work effectively. If one
is not in unison with the other, then
parents and teachers may start to
notice learning difficulties. In many
instances this can then lead to
reduced reading skills, poor behavior,
and deficits in gross motor control.
Visual and neurosensory disorders
can disrupt eye functions such as
tracking, depth perception, peripheral
vision, binocularity, maintaining
attention, and visualization.
Signs of vision and neurosensory
disorders in children related to the
eyes:
Holds head at extreme angles to
read or write
Poor posture when sitting at a
desk
Rubs eyes frequently when doing
near point tasks
Writing tends to wander above or
below the lines
Omits small words when reading
Misaligns digits in columns of
numbers
Can’t describe what he or she has
just read
Loses place while reading
Can better understand a story
when read to versus reading
by self
Avoids near work
Behavioral problems
ISSUE 33 2009
accomplished, the next goal is to be able
to look away from the beads at a distant
object and then look back at them and
regain fusion. Alternate beads after each
distance glance.
Finally, this training technique can
be used while the child is on a balance
board, balance beam, or trampoline,
incorporating all sensory systems
at once.
HOW TO FIND A QUALIFIED EYE CARE SPECIALIST
To locate a neuro-developmental optometrist in your area, log onto
www.nora.cc (Neuro-Optometric Rehabilitation Association).
When making an appointment, ask the following questions:
1.How frequently does the doctor examine children with autism spectrum
disorders?
2.Does the doctor do functional vision testing, not just acuity testing?
3.Does the doctor prescribe vision therapy, and who carries out the therapy?
4.How long is the examination process with the doctor? (It should last at least
90 minutes to get a good understanding of the child’s deficits.)
5.Will the doctor write and correspond with the school and/or other
professionals?
References
Allison, C.L., Gabriel, H., Schlange, D., &
Frederickson, S. (2007). An optometric approach
to patients with sensory integration dysfunction.
Optometry 78(12), 644-651.
Cohen, A. H., Lowe, S.E., Steele, G.T., Suchoff,
I.B., Gottlieb, D.D., & Trevorrow, T.L. (1988). The
efficacy of optometric vision therapy, Journal
of the American Optometric Association, 59(2),
95-105.
Holmes, J., Rice, M., Karlsson, V., Nielsen, B.,
Sease, J., & Shevlin, T. (2008). The best treatment
determined for childhood eye problem. Archives
of Ophthalmology, 126(10) 1336-1349.
HTS Inc. (2009). 6788 S. Kings Ranch Rd., Gold
Canyon, AZ 85118.
NeuroSensory Centers of America. (2009). 300
Beardsley Road, Austin, TX 78746
Taub, M.B., & Russell, R. (2007). Autism spectrum
disorders: A primer for the optometrist. Review of
Optometry. 144(5). 82-91
Trachtman, J.N. (2008). Background and history
of autism in relation to vision care, Optometry,
79(7), 391-396.
ERRATA
Going back and forth in the editorial process, words get switched around, sentences get changed
and, occasionally, an error results. This was the case with the article from Dr. Nancy Mullan,
which was printed in the July edition (issue #32). We are reprinting the paragraphs below, which
emphasize the need to be cautious about high glycemic index foods.
Excerpted from “The Importance of Nutritional Treatment” by Nancy Mullan, MD
Diet is foundational. A symptom which
is being caused by a food or a substance
the patient is ingesting will not resolve
until that substance is removed. The
foods chosen should have nutritional
value, be organic, be free of chemicals,
additives, preservatives, and other
pollutants, and be eaten in the least
processed form possible. Double
handfuls of nutritional supplements
can be negated by poor food choice or
quality. High glycemic index foods should
be avoided as blood sugar fluctuations
are a common cause of psychiatric
symptoms of all varieties, especially in
the bipolar individual.
Thyroid and adrenal functions
potentiate each other. If adrenal
gland function is low, there is strain
on the thyroid. If appropriate thyroid
support gives the patient symptoms,
the adrenal gland must be treated
first, and the thyroid addressed
again later. The adrenal glands are
the body’s first line of defense
against stress. They produce cortisol,
a stress hormone with important
functions. Adrenal stressors include
chemical toxins, allergies, infections
and psychological stress, among
other things. High glycemic index
foods, foods that increase blood
sugar levels rapidly and then let
them drop, are a stressor to the
adrenal glands. Cortisol is the
hormone which must be secreted
to prevent that blood sugar drop.
Patients with hypoglycemia are not
able to produce enough cortisol
quickly enough to keep their blood
sugar levels steady. Patients with
postural hypotension, dizziness
upon coming to an upright position
quickly, are experiencing a blood
pressure drop that indicates that
their adrenal function is impaired.
Adrenal hormones regulate blood
pressure also.
We apologize for any confusion this may have caused. If you would like a corrected .pdf file of this article e-mailed to you, please e-mail
Teri at teri@autismfile.com.
Also in the July 2009 edition, concerning the article titled “Are Federal Research Dollars Being Spent Wisely?” the lead author should
have been listed as Theresa Wrangham, with Vicky Debold, PhD, RN, as contributing author.
81
ADVOCACY
We Are
Not Alone
By Alice Shabecoff
Alice Shabecoff is the co-author with her husband, Philip, of Poisoned
Profits: The Toxic Assault on our Children (Random House), an expose and
investigative report on the connection between toxins and the epidemic
of children’s chronic illnesses, revealing how industry keeps the public and
pediatricians in the dark, with a unique guide for parents on protecting
their children from harm. See www.poisonedprofits.com.
F
rom the polluted waters of two
neighboring New Jersey towns rises a
crucial message for parents of autistic
children: we are not alone.
Toms River, a relatively affluent suburban
community, was home over the years to
various industrial plants whose output
included a witches’ brew of chemical wastes
poured into the soil and water sources
throughout the town. Among the chemicals
was the solvent (used to clean machinery)
trichloroethylene (TCE), our nation’s leading
or second-place water pollutant. Brick
Township, similarly middle income, was
for years drinking water laced with, among
other chemicals, a relative of TCE called
tetrachloroethylene.
Yet, while Brick Township’s children
suffered from such a high rate of autism
that it became (at the time) the federal
government’s national measure of one in
166, Toms River was afflicted with so many
children with cancer that the government
declared it a “cancer cluster” (it’s one of only
two communities the Centers for Disease
Control has seen fit to designate this way).
So, by the sad hand of misfortune, Brick
Township families confront similar difficult
challenges and similar questions to Toms
River and thousands of other places across
our nation with sick children.
America’s children have been afflicted
with a plague of autism that is biblical in its
dimensions, but it is only one of such plagues
affecting our children. One out of three
children today suffers from a chronic illness.
From birth defects, asthma, and cancer, to
other neurological illnesses including ADHD
and mental retardation, our kids are sick,
and sick at a rate far higher than previous
generations. Childhood cancer, once a rarity,
82
THE AUTISM FILE | www.autismfile.com has skyrocketed over 67 percent since 1950,
and asthma is up at least 141 percent in just
two decades.
More and more babies are born preterm,
or at term with low birth weight and small
head size, prefiguring developmental
problems, including autism, as they grow
up. Our ever-earlier maturing daughters
face endometriosis even in teenage years,
our sons are increasingly born with sexual
deformities and lower sperm quantity and
quality, and the ratio of boys to girls is
seriously declining.
Why is this happening? Children with
autism and others their age comprise the
first generation conceived and maturing in a
truly toxified world, accumulating a burden
of poisons along the way. Take just one
look at how we have polluted our world: In
1980, the United States made or imported
200 million pounds of industrial chemicals;
now that annual chemical load stands at
15 trillion pounds. Some of these products
were first developed for use as weapons for
warfare. Toxins now permeate every part
of our lives, released from industrial plants,
traffic, power generation, industrial farming,
waste-water discharge, and chemical-laden
household products.
There’s mercury in soft drinks, phthalates
in shower curtains, parabens in deodorants,
flame retardants in baby mattresses,
formaldehyde in cribs and nail polish,
triclosan in toothpaste, PCBs in household
dust, pesticides in flea collars, rocket fuel
in baby formulas, benzene in air fresheners,
radioactive waste in drinking water, artificial
growth hormones in beef, arsenic in chicken,
and synthetic hormones in bottles, teething
rings, and medical devices. Pacifiers now
incorporate nano particles of silver as an
alleged antibacterial.
Children with autism are subject to these
exposures just as all children are. But, as
Brick Township and Toms River show, the
outcome can differ. One child will react
differently from another because of genetic
makeup – some people are less able to
metabolize and excrete toxins – as well as
other influences such as stress or nutrition.
The damage done will also differ depending
on the timing, duration, pathway, and extent
of the exposure, and the combination of
toxins invading the child’s body. In Brick
Township, it may have been the presence of
chlorine in the water (which the town added
as a disinfectant) combined with the TCElike chemical that gave rise to the epidemic
of autism. In some, illness does not appear
until adulthood, perhaps as Alzheimer’s or
Parkinson’s.
Pesticides, as another example, have been
found to trigger autism in some children,
while the reaction among other children
ranges from learning and behavioral problems
to mental retardation, and some children
seem unaffected. Research just recently
discovered that, while most children’s level
of the protective enzyme that helps clear out
pesticides reaches a mature level after several
years of life, in others the level remains low
ISSUE 33 2009
Children with autism and children afflicted with other illnesses are a source of vast profit
to chemical companies which both manufacture the products that poison them and also
manufacture the alleged pharmaceutical “cures.”
longer (through age 7). So it’s possible one
child exposed at 5, for example, might be
harmed, while another is not.
Why has the level of environmental
poisons reached this height? Why are
pacifiers manufactured these days with nano
silver? Why not just rinse the pacifier in
hot, soapy water? Because that would not
generate a profit, or a grand enough profit,
for some corporation. Children with autism
and children afflicted with other illnesses are
a source of vast profit to chemical companies
which both manufacture the products that
poison them and also manufacture the
alleged pharmaceutical “cures.” How many
children diagnosed with behavioral disorders
got sick from chemical-laden foods or from
pesticides and now consume drugs daily?
Thousands of studies definitively show
cause and effect, the connection between
exposure and illness. But this evidence
is routinely obscured by controversy
deliberately generated by the companies that
profit – abetted by government collusion,
scientists-for-hire, lobbyists, lawyers, and
cynical public relations – applying the very
strategies they honed in defense of tobacco
decades ago, and acting within an unfettered
free market system very like the one enabling
the shenanigans behind the 2008 financial
meltdown. Legislators often play along.
When a bill that would permit coal-fired
power plants to emit a high level of mercury
– known to cause brain damage, including
autism – was introduced in the Senate, the
ISSUE 33 2009 level of donations from corporate interests
directly matched the level of each senator’s
history supporting loose standards to deal
with such emissions.
Since all of us as parents confront the
same dilemmas and difficulties, it’s all the
better to face them together. Parents who
are certain that vaccines brought about
their child’s autism are overlooking the
truth that some other toxic product might
also be to blame. There is no way that we
can identify what harmed Brick Township’s
children without finding out what harmed
Toms River’s. There’s no way we can muster
the strength to get rid of all those poisons
without making a common alliance among
ourselves.
We need to stand together to change
the way toxins are allowed into our lives.
Now manufacturers test their own products,
under no obligation to test for safety
to humans and the environment. Many
of the 80,000 chemicals on the market,
though suspect, remain in use, including
bisphenol A, the chemical added to plastics
such as water bottles and one of the many
chemicals suspected of upsetting human
and animal hormone systems. It may even
play an indirect role in causing autism.
Perhaps if a third-party laboratory tested
this chemical, we’d know more quickly and
more objectively. Together we could pressure
our federal representatives to force this
change (the Kid-Safe Chemicals Act has been
languishing in Congress for years due to
lack of public interest and intense corporate
resistance).
Together we could pressure our local
legislators to pass better laws, such as
California’s, which requires any product sold
in the state to be labeled if it contains toxins.
Together we could back energy sources that,
while removing the heavy metals and nuclear
waste generated by current power plants,
would also protect the globe.
Together we could create an online
network to inform each other about
practical ways to shield our children from
environmental poisons and strengthen their
health. We could build a consumer boycott.
We could support research and development
of products made through “green chemistry,”
which identifies the toxic molecule and then
replaces it with a safe alternative. We could
hold a nationwide march for prevention
instead of those marches for cures often
supported by the very companies that
make the poison. We could hold vigils and
demonstrations at City Hall or at a store or
manufacturing plant. If, as parents, we are
too burdened, call on grandparents – as
Philip and I are.
Among 73 million, one out of three
sick children translates into 24 million
children and 48 million parents (and 96
million grandparents). Let us recognize our
commonalities. We can be so much to each
other, comrades with common needs and
strengths to share, and a powerhouse to
change our nation for the better.
83
CHANGING THE COURSE OF
AUTISM IN CANADA
AUTISM ONE & AUTISM CANADA
CONFERENCE 2009
Keynote Address Martha Herbert, MD, PhD
If you live in Canada, the Northeastern United States, the Great Lakes area, or beyond, you will not want
to miss this conference from Autism One and Autism Canada. The 2-day main conference will be held
Saturday, October 31 and Sunday, November 1, preceded by a 1-day training program for practitioners
on Friday, October 30.
This conference features two dozen of the most highly respected names in the autism community and
provides the most up-to-date information to help your child. From implementing the best biomedical
treatments to realizing the benefits of educational therapies to adolescence and adulthood issues, the
conference brings you the answers to be your child’s most effective healer and powerful advocate.
Changing the course of autism will take cooperation and communication. We believe the conference is
a much needed step in the international effort to end the epidemic. Join us to learn how it begins with
one mother and one child recovering and then another and another. We come together in our common
future of care, treatment, recovery, and prevention that includes you.
Main Conference: Saturday, October 31 – Sunday, November 1
University of Toronto, Medical Sciences Building, 1 King’s College Circle, Toronto
In
qu
D
ch
eff
op
ga
wo
RI
Presentations include:
Jonathan Alderson, EdM
Managing and Transforming Challenging Behaviors
Evdokia Anagnostou, MD
Oxytocin for the Treatment of Social Deficits & Repetitive Behaviors in Autism
Wendy Edwards, MD
Biomedical Treatments for Autism - an Overview
Bryan Jepson, MD
Treating Autism: Understanding biomedical treatment options
Valerie MacLean
HANDLE: Helping Extraordinary People Do Ordinary Things
Lindsay Moir
School Meeting Management Tips
Marianna Ofner, MHSc, PhD
The Epidemic of Autism in Canada
I
Rudi Verspoor, HD(RHom), DMH Heilkunst: Treating ASD with a Comprehensive Approach Using Homeopathic Remedies
William Walsh, PhD
Oxidative Stress in Autism Spectrum Disorders
For registration information and additional information about presentations and practitioner training,
please visit www.autismone.org or www.autismcanada.org
We thank the following for their support of this conference:
SickKids Foundation, Spectrum Supplements, and Ontario Hyperbaric Oxygen Therapy Centre Inc.
84
FH_Autis
Autism/Asperger’s Syndrome
From Early Intervention to Adulthood
Over 100 Titles!
Future Horizons is proud
to support the journey toward
self-sufficiency, productivity,
and happiness for individuals
on the autism spectrum.
In an easy-to-read,
question-answer format,
Dr. Jim explains how to
choose the most
effective treatment
options. This is your
game plan to start
working with your child
RIGHT AWAY!
If
One of the best-selling
autism books of all
time! Every parent,
teacher, social worker,
therapist, and physician should have this
informative book in
their back pocket.
Dr. Jed Baker’s 20+
years of experience
have yielded time-tested strategies, and
results. He offers a
4-step model that will
improve your everyday
relationships with the
children in your life.
Successful inclusion in
high school is critical
for achieving independence as an adult.
This comprehensive
guide will help you give
your child or student
the best possible high
school experience.
The most famous
person with autism in
the world, Dr.Temple
Grandin offers helpful do’s and don’ts for
people with ASD, educators, and caregivers,
based on her “insider”
perspective and a great
deal of research.
t here is one theme in our publications and conferences, it’s the focus
on the positive and the progress people with ASD can make.
Visit www.FHautism.com to browse through our resources, find a
professional in your area, or see which of our outstanding authors will be
speaking at a conference near you!
Call 800-489-0727 for more information and your free catalog!
ISSUE 33 2009 FH_AutismFile-072709.indd 1
www.FHautism.com
85
7/28/09 9:12:39 AM
GRANDPARENT’S PERSPECTIVE
Autism and
Grandparents
By Ann Brasher
Ann is first Dean’s Grammy and then vice president of the National Autism Association, moderator of the ChelatingKids2 Yahoo support group,
autism advocate, and active with other autism organizations in her home state and nation working on various issues surrounding autism.
I
am a blessed woman. I have a healthy
son, Jeff, who has been married 22 years
and gave me a wonderful grandson,
Bryan, and a granddaughter, Samantha. My
daughter, Maranie, has also been married
22 years, and she gave me a wonderful step
grandson, Brett, and three boys of her own:
Zachary, Jackson, and last but not least,
Dean. The baby, the last grandchild, the one
we wanted to spoil rotten (since we knew
he was probably the last), was diagnosed on
the autism spectrum shortly after his second
birthday. His is the typical story of a typical
child who was meeting all milestones and
then just slipped away.
You have the diagnosis … now what?
Grandparents, we get a double whammy from
an autism diagnosis. I remember well the
look in my daughter’s eyes and the helpless
feeling that I felt when we got the diagnosis.
I wanted to fix it, kiss the boo-boo, put a
Band-aid on it, and make it go away. Not
only my grandson, but my daughter, too,
was greatly wounded. I don’t remember
ever feeling so helpless as a mother or
grandmother.
When life gives you lemons, you have a
choice. I chose to make lemonade and have
been stirring as hard as I can for close to 10
years now.
I am asked all the time by grandparents
and other family members, “What can I do?”
My answer has remained the same over the
years. Put the kids first. Your own child and
theirs and everything will be OK. Really,
86
THE AUTISM FILE | www.autismfile.com really “be there” for the parents. “Whatever it
takes” has to be your mantra.
I wasn’t too sure what a computer was,
how it worked, and certainly didn’t know why
anybody would want to be on one all day
long. Autism changed all that as I humbly
learned how to turn it on and how to search.
I knew one thing that I did have that my
daughter did not: time.
I set about looking for the most promising
information, research, and treatments. I
would pass to my daughter what I felt was
the most important and we would later
discuss it. Autism is much like the computer
and has a language all its own. It’s bad
enough that the diagnosis can be a multitude
of initials and then you add the initials of
medicines, supplements, organizations as
I knew one thing that
I did have that my
daughter did not: time.
well as online groups and it’s an alphabet
soup floating around in your head. I
have never tried to make the decisions
for Maranie, just tried to supply her with
CliffsNotes on autism to make it somewhat
easier for her to navigate. She did her share
of researching as well and became very well
educated on therapies, treatment, education,
etc. There is so much to look at with autism.
You wish daily for the magic pill, the golden
bullet. It’s not there and never will be. These
children are very complex and you need to
be prepared for the long haul. This is not a
sprint; it’s a marathon.
Your idea of what is important will change
with autism, as well. At one extended family
gathering my niece approached me very
nervous and anxious telling me that Dean
had just scribbled all over my antique murphy
bed with a permanent magic marker. She was
more than a bit surprised when I shouted for
my daughter, “MARANIE, COME QUICK!!!!”
Look what Dean did!!!! We were all excited
– not because the piece was damaged, but
rather that Dean had decided to draw on
something! He had poor motor skills and
hated anything to do with writing or drawing.
My niece stood there a little more than
perplexed at our excitement. Yes, things are
upside down in “autism world” and your
priorities change about what is important.
You may have to learn to check your anger
with those who stare and whisper when
you go out in public with a child on the
spectrum. I only blew up once. I was with
my daughter and grandson in an airport;
ISSUE 33 2009
One of the first things I noticed was that my daughter
had to turn her parenting skills upside down. It wasn’t
about what she would tolerate as a parent – it was
about what my grandson could tolerate.
we were traveling for treatment, and he
had a meltdown that wouldn’t resolve.
My daughter had a meltdown as well and
crumbled to the floor, holding Dean with
tears rolling down her face and looking
helpless. The crowd around us was staring
and whispering as I continued to try to help
my daughter and grandchild, but I lost it
and shouted at an older man that this was
autism and my grandson couldn’t help it.
When I then told him to quit staring at us,
the man shrugged his shoulders and replied,
“No habla Ingles.” The irony of having my
one and only public meltdown ruined by a
language snafu did give us something to
laugh at later. You will find that you have to
laugh along the way to keep from crying.
Perhaps my best-kept secret to surviving
public outings is to “go autistic” by not
making eye contact. This allows me to
concentrate on Dean and having a good
time with him and never see the stares.
You have to keep your sense of humor.
Conferences:
Invaluable information is gained at
conferences, although the experience can
ISSUE 33 2009 be brain-numbing as you enter information
overload. Attend some conferences with
your child if you can possibly work it out.
Keep your grandchild for the parents so that
they can attend support group meetings and
conferences. Do whatever it takes so that as
a family you can gain knowledge and work
together.
New-to-the-spectrum grandparents:
Get to work. Read everything you can.
Learn to deal with the issues of autism and,
specifically, how and what your grandchild
can tolerate and why. In all ways – physically,
mentally, and nutritionally – be supportive,
even if you are not always sure about
the whys and wherefores of the different
interventions the parents are considering.
Read and learn for yourself so that you
can participate, understand, and get on to
healing.
Consider investing in this grandchild as
your pocketbook allows. We can’t take it
with us and some financial assistance is so
helpful to these families. Look into special
needs trusts, as well. These can provide for
this child long after you are gone.
One of the first things I noticed was that
my daughter had to turn her parenting skills
upside down. It wasn’t about what she would
tolerate as a parent – it was about what my
grandson could tolerate. Life was forever
changed that day – places you can go, what
you can do, how you can do it. What is truly
important? What is simply material and
doesn’t really matter?
I’ve received e-mails, letters, and calls over
the years from parents all over the world
and the problems remain the same. “My
parents don’t get it.” “My parents don’t want
their house/car/furniture or fill-in- theblank messed up.” “I get no help.” “I get
no support.” “I get no understanding.” “I’m
not welcome nor is my family.” “We are not
invited to family gatherings.” Read these
lines again and imagine the pain of having
nothing more than an ill child … and you
become the outcast.
Autism ain’t easy. Autism ain’t for sissies.
So, pull out your armor and get tough.
You have a lot of hard work ahead of you.
With lots of love, patience, caring, and a ton
of understanding of this diagnosis, you can
do it. Your child and grandchild need you
more than ever and in ways you had never
imagined.
To you old-timers:
If you haven’t jumped on board the autism
bandwagon yet … why not? You are needed.
Autism is 24 hours a day, seven days a
week.
Postscript:
Dean is still on the spectrum despite many
various interventions. He turned 13 in
August. He is doing quite well and continues
to make improvements.
With lots of love,
patience, caring, and
a ton of understanding
of this diagnosis, you
can do it. Your child and
grandchild need you
more than ever and in
ways you had never
imagined.
87
BIOMEDICAL
Terbutaline use in
pregnancy
& the relationship with
autism spectrum disorders
By James P. Reichmann, MBA
James P. Reichmann, MBA, is a
well-known authority on obstetrical
home care, having spent 18 years of
his professional life dedicated to this
small health care niche. He was formerly
the president of the Women’s Health
Division of Matria (now Alere Division
of Inverness Medical Innovations, Inc.)
and last served in the corporate office
providing strategic sales direction to
several divisions of the company until
2005. Jim has authored peer-reviewed
articles on obstetrical home care
accepted in Obstetrics & Gynecology,
Managed Care Magazine, The Journal
of Reproductive Medicine, and the
American Journal of Obstetrics and
Gynecology. He also recently published
as an invited author on obstructive sleep
apnea and compliance to treatment for
Dental Sleep Medicine Magazine.
88
THE AUTISM FILE | www.autismfile.com Introduction
Autism spectrum disorder (ASD) estimates in
the United States have increased dramatically
from <3 per 10,000 in the 1970s to >80 per
10,000 currently, and the increase has been
even more dramatic in other countries 1,2. It
remains a critical public health issue despite
years of research on risk factors, prediction,
and prevention. Many say that the causes
of ASD are not known, but it appears that
genetics as well as toxic exposure play a role
in the neurological disease process 3-7.
Terbutaline is approved by the United
States Food and Drug Administration (FDA)
for use as a bronchodilator for patients
suffering from asthma. The drug is in a
class of drugs known as beta-2 adrenergic
receptor agonists that cause smooth muscle
relaxation by exerting a preferential effect on
the beta-2 adrenergic receptors. Terbutaline
was designed to relax the smooth muscle
of the lung, but an unintended side effect
of that muscle relaxation also occurs in the
smooth muscle of the uterus due to the fact
that beta-2 adrenergic receptors are also
located there as well as in the lung and heart.
For this reason, terbutaline has been used for
years to control preterm uterine contractions
in an effort to prolong pregnancy and avoid
preterm birth.
Although use data is difficult to obtain
because the drug is prescribed “off label,”
meaning for a use not vetted through the
stringent FDA approval process, it has been
reported that by 1990 an estimated 100,000
women were administered the FDA approved
beta-agonist ritodrine annually. Ritodrine is
a drug that is in the same class as terbutaline
and has a like mechanism of action. In
addition, it was probable between 2 and 10
times as many were prescribed terbutaline
as a tocolytic 8,9. Terbutaline is administered
intravenously, orally, subcutaneously, or with
a continuous subcutaneous pump, commonly
called terbutaline pump or T-pump. Recent
estimates are that 260,000 pregnant women
are exposed to some form of terbutaline
annually: over 4,000 of them are exposed to
long-term, continuous terbutaline 9.
Animal studies demonstrate adverse
effects on the susceptible developing
brain
Over twenty years of published peerreviewed scientific articles prove that
terbutaline is a developmental neurotoxicant.
Numerous animal trials demonstrate the
biological plausibility of adverse effects on
the fetus, either teratogenic or embryocidal
10-43
. A growing body of evidence supports
the notion that terbutaline negatively affects
the susceptible developing brain and is
closely associated with autistic spectrum
disorders 10-51.
Scientists at Kennedy Krieger Institute and
Johns Hopkins University have performed
research examining slightly different versions
of the gene (polymorphisms) that codes
for the beta-2 adrenergic receptor (B2AR)
and increase the risk of autism spectrum
disorder when combined with exposure to
terbutaline. The 2005 twin study by Connors,
et al., clearly demonstrates that prenatal
exposure to terbutaline is associated with
increased incidence of ASD. Investigators
concluded, “Prenatal overstimulation of the
beta-2 adrenergic receptor by terbutaline
or by signaling of genetic polymorphisms of
ISSUE 33 2009
agent is an assessment of the risk of fetal
injury due to the pharmaceutical if it is used
as directed by the mother during pregnancy.
Every drug approved in the United States is
assigned a pregnancy risk category by the
FDA: A, B, C, D or X.
nCategory A means that adequate
and well-controlled studies have
failed to demonstrate a risk to
the fetus in the first trimester of
pregnancy (and there is no evidence
of risk in later trimesters).
the beta-2 receptor that have diminished
desensitization can affect cellular responses
and developmental programs in the brain,
leading to autism 46. This discovery is
supported by an extensive genetic study by
Cheslack-Postava, et al., which confirmed
the presence of these B2AR gene variants
in families with ASD 44. Zerrate, et al.,
additionally demonstrated the effects of
terbutaline on early brain development in the
animal model using both neuropathologic as
well as behavioral measures 33. Researchers
at Duke contributed much of the evidence
demonstrating prenatal modulation of the
beta-2 adreneric receptor may alter normal
brain development by delaying nervous
system development and consequently
contributing to developmental delay as
well as to autism 10-43. Animal studies have
clearly demonstrated altered neural cell
differentiation, receptor and signaling
shifts, as well as permanent changes in
responsiveness 10-43.
Fetal/neonatal safety is called into
question by human studies
One small published study showed no
difference in outcomes for 7-to-9-year-old
children exposed to ritodrine in utero 51.
Contrary to that one report, at least six case
reports suggest that beta-sympathomimetic
drugs such as terbutaline have long lasting
and significant effects on the susceptible
developing fetal brain 44-50. Hadders-Algra, et
al., demonstrated children exposed in utero
suffered from impaired school performance
and Pitzer, et al., proved exposed children
experienced a higher incidence of psychiatric
and learning disorders 49,50.
ISSUE 33 2009 “Off-label” use
As mentioned previously, terbutaline is
approved by the FDA for prevention and
relief of bronchospasm and is prescribed
off label as a tocolytic to arrest preterm
labor contractions. Off-label prescribing or
unapproved use occurs when a physician
prescribes a drug for a purpose other than
the ones that approved by the FDA. The
practice is widespread, and although there
are no accurate data, estimates are that as
much as 60 percent of all drug prescriptions
annually are written for off-label indications
52
. The FDA considers off-label prescribing
an important part of clinical practice and
medical innovation 54. While this practice
provides an innovative pathway in clinical
practice, it raises legitimate concerns about
exposing patients to risk and incurring costs
to the health care system 53-56.
The FDA has been rather silent on the
issue of terbutaline use in pregnancy
even though the manufacturers of the
drug proactively warn against its use as a
tocolytic. Specifically the package insert
states, “Terbutaline sulfate has not been
approved and should not be used for
tocolysis. Serious adverse reactions may
occur after administration of terbutaline
sulfate to women in preterm labor. In the
mother, these include increased heart rate,
transient hyperglycemia, hyperkalemia,
cardiac arrhythmias, pulmonary edema, and
myocardial ischemia. Increased fetal heart
rate and neonatal hypoglycemia may occur
as a result of maternal administration.” 56.
In 1979, the FDA introduced a classification
of fetal risks due to pharmaceuticals. The
pregnancy category of a pharmaceutical
nCategory B means that adequate
reproduction studies have failed to
demonstrate a risk to the fetus, and
either there are no adequate and
well-controlled studies in pregnant
women or no animal studies have
shown an adverse effect. However,
adequate and well-controlled
studies in pregnant women have
failed to demonstrate a risk to the
fetus in any trimester.
nCategory C means that animal
reproduction studies have shown
an adverse effect on the fetus, and
there are no adequate and wellcontrolled studies in humans, but
the potential benefits may warrant
use of the drug in pregnant women
despite potential risks.
nCategory D means there is positive
evidence of human fetal risk,
based on adverse reaction data
from investigational or marketing
experience or on studies in humans,
but potential benefits may warrant
use of the drug in pregnant women
despite potential risks.
nCategory X means that studies
in animals or humans have
demonstrated fetal abnormalities,
and/or there is positive evidence of
human fetal risk, based on adverse
reaction data from investigational or
marketing experience. In addition,
the risks involved in the use of the
drug in pregnant women clearly
outweigh potential benefits.
89
BIOMEDICAL
The FDA allows terbutaline to carry its
original pregnancy risk category B despite
the fact that both well-designed animal
studies and human investigation reveal
adverse effects to the developing fetus as
well as on the mother 10-51. 90-96.
Regarding continuous subcutaneous
terbutaline therapy, the FDA—in a
November 17, 1997 letter to Cynthia A.
Pearson, Executive Director, National
Women’s Health Network (NWHN), that
served as a response to a Citizen Petition
filed on the topic—is more forthcoming
in its acknowledgement of the lack of
supportive evidence demonstrating
efficacy as well as the potential adverse
maternal, fetal, and neonatal safety
concerns. The FDA wrote, “The FDA
agrees with your [NWHN] contention
that there is no scientifically acceptable
evidence that terbutaline administered
continuously via subcutaneous infusion
pump significantly prolongs pregnancy.
The FDA also agrees that there is some
evidence that the long-term use of
subcutaneous terbutaline may adversely
affect maternal, fetal, and neonatal
health.” 57,58,59.
When boluses of terbutaline are
repeated at close intervals in conjunction
with low dose continuous subcutaneous
administration, systemic levels can rapidly
reach those of intravenous administration.
Because of these high systemic drug levels
and their known toxicities, intravenous
terbutaline requires hospital inpatient
monitoring. Terbutaline crosses the
placental barrier, and concentrations of
the drug in umbilical cord blood levels
are 55 percent that of maternal blood
levels 60,61. Additionally, the FDA issued
a “Dear Colleague” letter in reaction to
the NWHN Citizen Petition in late 1997
57, 62
reiterating that the continuous
subcutaneous terbutaline pump is not
approved for a preterm labor indication,
90
THE AUTISM FILE | www.autismfile.com is potentially dangerous, lacks clinical
efficacy, and should not be used for
tocolysis 62.
The Agency for Healthcare Research
and Quality, American College of
Obstetricians and Gynecologists, and
Cochrane Evidence-Based Medicine
Review all recommend against
terbutaline as a tocolytic
The United States Department of Health
and Human Services through the Agency
for Healthcare Research and Quality
concluded after an extensive review of
all of the medical evidence “in terms of
gestational age at birth, prolongation
of pregnancy or birth weight, no
benefits from maintenance treatment
were uncovered.” It added, “We graded
beta-mimetics as ‘high’ in probability of
maternal risk. These drugs were shown
to pose a risk to the mother of serious
cardiovascular risk, minor cardiovascular
risk, metabolic harms, and psychosocial
harms” 63.
The American College of Obstetricians
and Gynecologists (ACOG) warned in an
ACOG Technical Bulletin, “No studies
have convincingly demonstrated an
improvement in survival or any index of
long-term neonatal outcome with the use
of tocolytic therapy. On the other hand,
the potential damages of tocolytic therapy
to the mother and the neonate are well
documented.” 64. A subsequent ACOG
Practice Bulletin reiterated “Prolonged
oral, subcutaneous, or intravenous
tocolytic treatment is not effective” 65.
The preeminent evidence-based
medicine library, the Cochrane Database
of Systematic Reviews, examined the
evidence that included 11 randomized
controlled trials with a total of 1,239
women. No differences were revealed
between beta-mimetics and placebo, no
treatment, or other tocolytics for perinatal
mortality and morbidity outcomes.
Reviewers concluded that the available
published medical evidence does not
support the use of oral beta-mimetics for
long-term tocolysis 66.
Continuous subcutaneous terbutaline
pump use is not supported by
randomized controlled trials
The Cochrane Database of Systematic
Reviews also examined “terbutaline
pump maintenance therapy after
threatened preterm labor for preventing
preterm birth” 67. Reviewers concluded,
“Terbutaline pump maintenance therapy
has not been shown to decrease the rate
of preterm birth by prolonging pregnancy.
Furthermore, the lack of information on
the safety of the pump therapy, as well
as its substantial expense, argues against
its role in the management of arresting
preterm labor. Future use should only be in
the context of well conducted, adequately
powered randomized controlled trials” 67.
The continuous subcutaneous
terbutaline pump was first described
in 1988, and since that time only
two small randomized controlled
trials (RCT) on the subject have been
published 68,69,70. In 1997, the initial
RCT concluded, “Terbutaline by pump,
saline by pump and oral terbutaline
appear equivalent for the prevention of
preterm delivery. The terbutaline pump
should remain experimental” 69. The
second RCT published in 1998 concurred,
“Maintenance terbutaline therapy
administered by pump does not prolong
gestation in women successfully treated
for suspected preterm labor” 70.
Over twenty observational trials and
case series have been published by the
providers of continuous subcutaneous
terbutaline therapy 68,71-91. In a variety
of forums, the FDA has stated that all
of these studies contain significant
ISSUE 33 2009
methodological flaws, including obvious
design and selection bias 57,58,59,62. As a
result, the terbutaline pump was adopted
into clinical practice without the benefit
of well-designed, randomized controlled
trials, and when the RCTs were finally
published, clinical practice unfortunately
had already been established.
The safety of continuous subcutaneous
terbutaline must be weighed against
the fact that no therapeutic benefit
has been demonstrated by scientifically
sound evidence 67,69,70,75. Practically, the
References
Blaxill MF. What’s going on? The
question of time trends in autism. Public
Health Reports. 2004;119:536-51.
1
2
Hertz-Picciotto I, Delwiche L. The rise
in autism and the role of age at diagnosis.
Epidemiology 2009;1:84-90.
3
Muhle R, Trentacoste SV, Rapin IR.
The genetics of autism. Pediatrics.
2004;113:e476-86.
Windham GC, Zhang L, Gunier R, Croen
LA, Grether JK. Autism spectrum disorders
in relation to distribution of hazardous air
pollutants in the San Francisco Bay Area.
Environ Health Perspect. 2006;114:143844.
4
Spzir M. Tracing the origin of autism: a
spectrum of new studies. Environ Health
Perspect.2006;114:A412-18.
5
6
Spzir M. New thinking on
neurodevelopment. Environ Health
Perspect. 2006;114:A101-07.
Hertz-Picciotto I, Croen LA, Hansen
R, Jones CR, van de Water J, Pessah IN.
The CHARGE study: An epidemiologic
investigation of genetic and environmental
factors contributing to autism. Environ
Health Perspect. 2006;114:119-25.
7
Levino KJ, Little B, Cunningham FG. The
national impact of ritodrine hydrochloride
for inhibition of preterm labor. Obstet
Gynecol. 1990;76:12.
8
Lam F, Elliott J, Jones JS, Katz M,
Knuppel R, Morrison J, Newman R, Phalen
J, Willcourt R. Clinical issues surrounding
the use of terbutaline sulfate for preterm
labor. Obstetrical & Gynecological Survey.
Nov. 1998;53(11S) Supplement:85S-95S.
9
10
Kudlacz EM, Navarro HA, Kavlock
RJ, Slotkin TA. Regulation of postnatal
beta-adrenergic recptor/adenylate
cyclase development by prenatal agonist
stimulation and steroids: alterations in
rat kidney and lung after exposure to
terbutaline or dexamethasone. J Dev
Physiol. 1990 Nov;14(5):273-81.
Slotkin TA, Oliver CA, Seidler FJ. Critical
periods for the role of oxidative stress
in the developmental neurotoxicity of
chlorpyrifos and terbutaline, alone or in
combination. Brain Res Dev Brain Res.
2005 Jun 30;157(2):172-80.
11
Aldridge JE, Meyer A, Seidler FJ, Slotkin
TA. Developmental exposure to terbutaline
12
ISSUE 33 2009 medical risk/reward tradeoff discussion
becomes moot in light of the fact that no
good scientific evidence of benefit exists
67,69,70,75
. Additionally five case series or
individual case reports suggest concern
over maternal safety is warranted 92-96.
Conclusion
Association and causation become very
difficult to discern when it comes to the
environment and disease 97. For this reason
it will likely never be known if terbutaline
actually causes autism spectrum disorder,
but it is clear that in the absence of any
proven benefit it seems imprudent to
expose the fetus to terbutaline through
any route of administration because of the
strong possibility that it may cause autism
spectrum disorder.
Clearly the FDA should protect the
public through a reexamination of the
current medical evidence and reassign a
more accurate pregnancy risk category
so that clinicians and patients can make
better informed decisions on the use of
terbutaline in pregnancy.
and chlorpyrifos: pharmacotherapy of
preterm labor and an environmental
neurotoxicant converge on serotonergic
systems in neonatal rat brain regions.
Toxicol Appl Pharmacol. 2005 Mar
1;203(2): 132-44.
20
Auman JT, Seidler FJ, Tate CA, Slotkin
TA. Are developing beta-adrenoceptors
able to desensitize? Acute and chronic
effects of beta-agonists in neonatal heart
and liver. Am J Physiol Regul Integr Comp
Physiol. 2002 Jul;283(1):R205-17.
13
Meyer A, Seidler FJ, Aldridge JE,
Slotkin TA. Developmental exposure to
terbutaline alters cell signaling in mature
rat brain regions and augments the
effects of subsequent neonatal exposure
to the organophosphorus insecticide
chlorpyrifos. Toxicol Appl Pharmacol. 2005
Mar 1; 203(2):154-66
21
Slotkin TA, Tate CA, Cousins MM,
Seidler FJ. Beta-adrenoceptor signaling
in the developing brain: Sensitization or
desensitization in response to terbutaline.
Brain Res Dev Brain Res. 2001 Nov
26;131(1-2):113-25.
14
Rhodes MC, Seidler FJ, Qiao D, Tate
CA, Cousins MM, Slotkin TA. Does
pharmacology for preterm labor sensitize
the developing brain to environmental
neurotoxicants? Cellular and synaptic
effects of sequential exposure to
terbutaline and chlorpyrifos in neonatal
rats. Toxicol Appl Pharmacol. 2004 Mar
1;195(2):203-17.
15
Rhodes MC, Nyska A, Seidler FJ,
Slotkin TA. Does terbutaline damage the
developing heart? Birth Defects Res B Dev
Reprod Toxicol. 2003 Dec;68(6):449-55.
16
Kreider ML, Seidler FJ, Slotkin TA. Betaadrenocepter modulation of transiently
overexpressed alpha-2 andrenocepters
in brain an peripheral tissues: Cellular
mechanisms underlying the developmental
toxicity of terbutaline. Brain Res Bull.
2004 Jan 15; 62(4):305-14.
17
Rhodes MC, Seidler FJ, Abdel-Rahman
A, Tate CA, Nyska A, Rincavage HL,
Slotkin TA. Terbutaline is a developmental
neurotoxicant: Effects on neuroproteins
and morphology in cerebellum,
hippocampus, and somatosensory
cortex. J Pharmacol Exp Ther. 2004
Feb;308(2):529-37. Epub 2003 Nov 10.
18
Slotkin TA, Auman JT, Seidler FJ.
Ontogenesis of beta-andrenoceptor
signaling: Implications for perinatal
physiology and for fetal effects of
tocolytic drugs. J Pharmacol Exp Ther.
2003 Jul;306(1):1-7. Epub 2003 Apr 7.
Review.
Garofolo MC, Seidler FJ, Auman JT,
et al. Beta-Adrenergic modulation of
muscarinic cholinergic receptor expression
and function in the developing heart. Am
J Physiol Regul Integr Com Physiol. 2002
May; 282(5):R1356-63.
19
22
Auman JT, Seidler FJ, Tate CA, Slotkin
TA. Beta adrenoceptor-mediated cell
signaling in the neonatal heart and
liver: Responses to terbutaline. Am J
Physiol Regul Integr Comp Physiol. 2001
Dec;281(6):R1895-901.
23
Auman JT, Seidler FJ, Slotkin TA.
Regulation of fetal cardiac and hepatic
beta-adrenoceptors and adenylyl cyclase
signaling: Tebutaline effects. Am J
Physiol Regul Integr Comp Physiol. 2001
Oct;281(4):R1079-89.
Navarro HA, Kudlacz EM, Kavlock RJ,
Slotkin TA. Prenatal terbutaline treatment:
Tissue-selective dissociation of perinatal
changes in beta-adrenergic receptor binding from regulation of adenylate cyclase
activity. Life Sci. 1991;48(3):269-74.
24
Navarro HA, Kudlacz EM, Slotkin TA.
Control of adenylate activity in developing
rat heart and liver: Effects of prenatal
exposure to terbutaline or dexamethasone.
Biol Neonate. 1991;60(2):127-36.
25
26
Kudlacz EM, Slotkin TA. Regulation of
neonatal rat lung compliance by betaadrenergic receptor stimulation: Effects
of prenatal exposure to terbutaline or
dexamethasone. J Dev Physiol. 1990
Dec;14(6):307-10.
27
Kudlacz EM, Navarro HA, Slotkin
TA. Regulation of beta-adrenergic
receptor-mediated processes in fetal rat
lung: Selective desensitization caused
by chronic terbutaline exposure. J Dev
Physiol. 1990 Aug;14(2);103-8.
control of heart rate. Pediatr Res. 1989
Dec;26(6):554-7.
30
Slotkin TA, Baker FE, Dobbins SS,
Eylers JP, Lappi SE, Seidler FJ. Prenatal
terbutaline exposure in the rat: Selective
effects on development of nonadrenergic
projections to cerebellum. Brain Res Bull.
1989 Oct-Nov;23(4-5):263-5.
31
Kudlacz EM, Navarro HA, Slotkin
TA. Phosphatidic acid phosphatase
in neonatal rat lung: Effects of
prenatal dexamethasone or terbutaline
treatment on basal activity and on
responsiveness to beta adrenergic
stimulation. J Pharmacol Exp Ther. 1989
Jul;250(1):236-40.
32
Kudlacz EM, Navarro HA, Eylers JP,
Lappi SE, Dobbins SS, Slotkin TA. Effects
of prenatal terbutaline exposure on
cellular development in lung and liver of
neonatal rat: Ornithine decarboxylase
activity and macromolecules. Pediatr Res.
1989 Jun;25(6):617-622.
33
Zerrate MC, Petnikov M, Connors SL,
et al. Neuroinflammation and behavioral
abnormalities after neonatal terbutaline
treatment in rats: Implications for
autism. J Pharmacol Exp Ther. March 30,
2007;322(1):16-22.
34
Slotkin TA, Tate CA, Cousins MM, et al.
Imbalances emerge in cardiac autonomic
cell signaling after neonatal exposure
to terbutaline or chlorpyrifos alone or in
combination. Brain Res Dev Brain Res.
2005 Dec 7;160(2):219-30.
35
Garofolo MC, Seidler FJ, Cousins
MM, Tate CA, Qiao D, Slotkin TA.
Developmental toxicology of terbutaline:
Critical periods for sex-selective effects on
macromolecules and DNA synthesis in rat
brain, heart, and liver. Brain Res Bull. 2003
Jan 15;59(4):319-29.
36
Gaspar R, Kolarovski-Sipiczki Z, Ducza
E, et al. Terbutaline increases the cervical
resistence of the pregnant rat in vitro.
Naunyn Schmiedibergs Arch Pharmacol.
2005 Jan;371(1):61-71.
28
Slotkin TA, Kudlacz EM, Lappi
SE, Tayyeb MI, Seidler FJ. Fetal
terbutaline exposure causes selective
postnatal increases in cerebellar alphaadrenergic receptor binding. Life Sci.
1990;47(22):2051-7.
37
Slotkin TA, Seidler FJ. Developmental
exposure to terbutaline and chlorpyrifos,
separately or sequentially, elicits
presynaptic serotonergic hyperactivity in
juvenile and adolescent rats. Brain Res
Bull. 2007 Jul 12;73(4-6)301-9.
29
Hou QC, Slotkin TA. Effects of prenatal
dexamethasone or tebutaline exposure
on development of neural and intrinsic
38
Fujita H, Tanaka J, Maeda N. et
al. Adrenergic agonists suppress the
proliferation of microglia through beta
91
BIOMEDICAL
2-adrenergic receptor. Neurosci Lett. 1998
Feb 6;242(1):37-40.
39
Nunez JL, Alt JJ, McCarthy MM. A
novel model for prenatal brain damage.
II. Long-term deficits in hippocampal cell
number and hippocampal-dependent
behavior following neonatal GABAAreceptor activation. Exp Neurol. 2003
Jun;181(2):270-80.
40
Slotkin TA, Seidler FJ. Transient
postnatal evaluation of norepinephrine
content and turnover in brain regions of
rats exposed to terbutaline prenatally: Evidence for autoregulation of noradrenergic
development? Res Commun Chem Pathol
Pharmacol. 1992 Jun;76(3):269-78.
41
Auman JT, Seidler FJ, Slotkin TA.
Beta-adrenoreceptor control of G protein
function in the neonate: Determinant
of desentization or sensitization. Am J
Physiol Regul Integr Com Physiol. 2002
Nov;283(5):R1236-44.
42
Beitzel, F, Sillence, MN, Lynch,
GS. Beta-adrenoreceptor signaling
in regenerating skeletal muscle after
beta-agonist administration. Am
J Physiol Endocrinol Metab. 2007
Oct;293(4):E932-E940.
43
Granger, JP. Maternal and fetal
adaptations during pregnancy: lessons
in regulatory and integrative physiology.
Am J Physiol Regulatory Integrative Comp
Physiol. 2002 Dec;283 (6) :R1289-R1292.
Cheslack-Postava, K, Fallin, MD,
Avramopoulos, D, Connors, SL,
Zimmerman, AD, Eberhart, CG, Newsch,
CJ. Beta-2 adrenergic receptor gene
variants and risk for autism in the AGRE
cohort. Molecular Psychiatry. 2007, 12,
283-291. doi:10.1038/sj.mp.4001940;
published online January 2, 2007.
44
45
Feldman H. Expressive language delay in
a toddler. J Dev Behav Pediatr. 2001,22 2
Suppl: S99-103.
Connors SL, Crowell DE, Eberhardt
CG, Copeland J, Newschaffer CJ, Spence
SJ, Zimmerman AW. Beta-2 adrenergic
receptor activation and genetic
polymorphisms in autism: Data from
dizygotic twins. J Child Neurol. 2005
Nov;20(11):876-84.
46
47
Kilburn, KY, Thrasher, JD, Immers,
IB. Autism, terbutaline and neurological
impairment. Eur J Oncology.2007 (in press).
48
Feenstra MGP. Functional
neuroteratology of drugs acting on
adrenergic receptors. Neurotoxicology
13(1):55-64, 1992.
Pitzer M, Schmidt M, Esser G, Laucht M.
Child development after maternal tocolysis
with beta-sympathomimetic drugs.
Child Psychiatry Hum Dev. 2001 Spring
2001;31(3):165-82
49
Hadders-Algra M, Touwen B, Huisjes H.
Long-term follow-up of children prenatally
exposed to ritodrine. British Journal
of Obstetrics and Gynaecology. 1986
Feb;93:156-161.
50
51
Polowczyk D, Tegani N, Lauersen
N, Siddiq F. Evaluation of seven-tonine-year-old children exposed to
ritodrine In utero. Obstet Gynecol.1984
Oct;64(4):485-8.
92
THE AUTISM FILE | www.autismfile.com 52
Beck JM, Azari ED. 1998. FDA, Off-label
use, and informed consent: Debunking
myths and misconceptions. 53 Food, Drug,
and Cosmetic Law Journal. 1998;71.
68
Lam F, Gill P, Smith M, Kitzmiller
JL, Katz M. Use of the subcutaneous
terbutaline pump for long-term tocolysis.
Obstet Gynecol. 1988;72:810-3.
Hoo GW. Off-label, on target? Chest.
2004;126:1022-1025.
69
Wenstrom K, Weiner C, Merrill D, Niebyl
J. A placebo-controlled randomized
trial of terbutaline pump for prevention
of preterm delivery. Am J Perinatol.
1997;14:87-91.
53
54
Nightingale SL. Off-label use of
prescription drugs. Am Fam Physician.
2003;68:425-427.
Pomerantz JM, Finkelstein SN, Berndt
ER, et al. Prescriber intent, off-label
usage, and early discontinuation of
depressants: A retrospective physician
survey and data analysis. J Clin Psychiatry.
2004;65:395-404.
55
56
Package Insert, Issued February 2004;
SICOR Pharmaceuticals, Inc., Irvine, CA
92615.
70
Guinn D, Goepfert A, Owen J,
Wenstrom K, Hauth J. Terbutaline pump
maintenance for prevention of preterm
delivery: A double-blind trial. Am J Obstet
Gynecol.1998;179:874-8.
71
Lam F, Gill P, Smith M, Kitzmiller
JL, Katz M. Use of the subcutaneous
terbutaline pump for long-term tocolysis.
Fischer JR, Katz BL. Continuous
subcutaneous infusion of terbutaline for
suppression of preterm labor. Clin Pharm.
1991;10:292-6.
72
Nightingale SL, U.S. Food and Drug
Administration (FDA) Dear Colleague
Letter dated November 13, 1997. Web
site http://www.fda.gov/medwatch/
SAFETY/1997/terbut.htm
57
58
Woodcock J, Burlington DB. FDA
Response to the July 17, 1996 NWHN
Citizen Petition. FDA Docket No. 96P0258/CP1. Nov 7, 1997.
National Women’s Health Network.
Citizen Petition to the FDA. FDA Docket
No. 96P-0258. July 17, 1996.
59
60
Bergman B, Bokstrom H, Borga O, Enk
L, Hedner T, Wangberg B. Transfer of
terbutaline across the human placenta
in late pregnancy. Eur J Respir Dis Suppl.
1984;134:81-6.
61
Ingremarsson I, Westgren M, Lindberg
C, Ahern B, Lundquist I, Carlsson C. Single
injection of terbutaline in term labor:
Placental transfer and effects on maternal
and fetal carbohydrate metabolism. Am J
U.S. Food and Drug Administration,
November 13, 1997. www.fda.gov/med/
medwatch/safety/1997/terbt.htm
62
63
Agency for Healthcare Research and
Quality (AHRQ). Systematic review of
the literature regarding the management
of preterm labor. Summary, Evidence
Report/Technical Assessment: Number
18, December 2000,AHRQ Publication
No. 01-E021. Agency for Healthcare
Research and Quality, Rockville, MD.
American College of Obstetricians and
Gynecologists. ACOG technical bulletin.
Preterm Labor. No. 206, June 1995.
64
Allbert JR, Wise CA, Lou CH, Gookin
KS, Parmenter MA, Morrison JC.
Subcutaneous tocolytic therapy for
patients at very high risk for preterm
birth. J Perinatol.1992;12:28-31.
73
74
Lindenbaum C, Ludmir J, Teplick FB,
Cohen AW, Samuels P. Maternal glucose
intolerance and the subcutaneous
terbutaline pump. Am J Obstet
Gynecol.1992;166: 925-8.
75
Moise KJ, Sala DJ, Zurawin RK, Cano LE,
Hesketh DE, Carpenter RJ Jr. Continuous
subcutaneous terbutaline pump therapy
for premature labor, safety and efficacy.
South Med J. 1992;85:255-9.
76
Elliott John P. Quadruplet pregnancy:
Contemporary management and outcome.
Obstet Gynecol. 1992; 80:421-4.
77
Adkins RT, Van Hooydank JE, Bressman
PL, Growdon JH Jr., Bolen PR, Varin JC,
Thompson BR. Prevention of preterm
birth: early detection and aggressive
treatment with terbutaline. South Med J.
1993;86:157-64.
78
Regenstein AC, Belluomini J, Katz
M. Terbutaline tocolysis and glucose
intolerance. Obstet Gynecol. 1993;
81:739-41.
79
Allbert JR, Johnson C, Roberts WE,
Martin RW, Gookin KS, Morrison JC.
Tocolysis for recurrent preterm labor
using a continuous subcutaneous infusion
pump. J Reprod Med. 1994;39:614-18.
American College of Obstetricians and
Gynecologists. ACOG practice bulletin.
Management of preterm labor. No. 43,
May 2003. Obstet Gynecol. 2003;101 (5pt
1):1039-47.
80
Perry KG, Morrison JC, Rust OA,
Sullivan CA, Martin RW, Naef RW 3rd.
Incidence of adverse cardiopulmonary
effects with low-dose continuous
terbutaline infusion. Am J Obstet Gynecol
1995;173:1273-7.
Dodd JM, Crowther CA, Dare MR,
Middleton P. Oral betamimetics for
maintenance therapy after threatened
preterm labour. Cochrane Database Syst.
Rev 2006;(1):CD003929.
81
Elliott JP, Flynn MJ, Kaemmerer EL,
Radin TG. Terbutaline pump tocolysis in
high order multiple gestation. J Reprod
Med. 1997;42:687-94.
65
66
Ambrose S, Rhea DJ, Istwan NB, Collins
A, Stanziano G. Clinical and economic
outcomes of preterm labor management:
inpatient vs. outpatient. Journal of
Perinatology. 2004;1-5.
82
67
Nanda K, Cook LA, Gallo MF, Grimes
DA. Terbutaline pump maintenance
therapy after threatened preterm labour
for preventing preterm birth. Cochrane
Database Syst. Rev 2002;(4).
83
Lam F, Bergauer N, Coleman S,
Jacques D, Stanziano GJ. A comparison
of gestational days gained with
oral terbutaline versus continuous
subcutaneous terbutaline in women
with twin gestations. J Perinatol.
2000;20:408-13.
84
Elliott JP, Bergaruer NK, Jacques DL,
Coleman SK, Stanziano GJ. Pregnancy
prolongation in triplet pregnancies: Oral
vs. continuous subcutaneous terbutaline. J
Reprod Med. 2001;46:975-82.
85
Lam F, Bergauer N, Stanziano G, Rhea
D. Clinical and cost effectiveness of
continuous subcutaneous terbutaline
versus oral tocolytics for treatment of
recurrent preterm labor in twin gestations.
J Perinatol. 2001;21:444-450.
86
Hamersley SL, Coleman SK, Bergauer NK, Bartholomew LM, Pinckert TL.
Delayed-interval delivery in twin pregnancies. J Reprod Med. 2002;47:125-30.
87
Morrison J, Chauhan SP, Carrol S, Bofill
JA, Magann E. Benefits of continuous
subcutaneous terbutaline infusion in the
management of recurrent preterm labor: A
case-control study. Am J Obstet Gynecol.
2003;188:1460-7.
88
Lam F, Istwan N, Jacques DL, Coleman
S, Stanziano GJ. Managing perinatal
outcomes: The clinical and costeffectiveness of pharmacologic treatment
of recurrent preterm labor. Managed Care.
2003;12,(7);39-46.
89
Fleming A, Bonebrake R, Istwan N, Rhea
D, Coleman S, Stanziano GJ. Pregnancy
and economic outcomes in patients
treated for recurrent preterm labor. J.
Perinatol. 2004;24:223-227.
90
Elliott JP, Istwan N, Rhea D, Stanziano
G. The occurrence of adverse events
in women receiving continuous
terbutaline therapy. Am J Obstet Gynecol.
2004;191;1277-82.
91
Lam, F. The dosing of subcutaneous
terbutaline pump tocolytic therapy
is critical. Am J Obstet Gynecol.
1992;167:1156-7.
92
Hudgens DR, Conradi SE. Sudden
death associated with terbutaline sulfate
administration. Am J Obstet Gynecol.
1993;169:120-121.
93
Perry KG, Morrison JC, Rust OA, Sullivan
CA, Martin RW, Neaf RW. Incidence of
adverse cardiopulmonary effects with lowdose continuous terbutaline infusion. Am J
94
Levy DL. Morbidity caused by
terbutaline infusion pump therapy. Am J
Obstet Gynecol. 1995: 170(6):1835
95
Quinn PG, et al. Terbutaline hepatitis
in pregnancy: Report of two cases and
literature review. Am J Gastroent. 1994;
89(5):781-784.
96
Fletcher SE. et al. Myocardial necrosis
in a newborn after long-term maternal
subcutaneous terbutaline infusion for
suppression of preterm labor. Am J Obstet
Gynecol. 1995; 165(5):1401-1404.
97
Hill AB. The environment and disease:
association or causation. Proc R Soc Med.
1965;58:295-300.
ISSUE 33 2009
International telephone consultations available
Autism is a multi-factorial disorder with a number of plausible causative issues
associated with its aetiology yet a cure is still very difficult to find.
The Clinic’s approach recognises that even though autism has a psychological diagnosis many
individuals with autism share common predisposed susceptibilities and biomedical problems that may be
responsible for its aetiology. Autism therefore must be addressed and treated, not only as a psychological
condition but more accurately as a biomedical disorder initiating aberrant psychological responses.
Issues from gastro-intestinal disturbances such as diarrhea, constipation and dysbiosis to immunological
and metabolic imbalances to detoxification and neurological problems exist in the majority.
The aim is to address all issues that are relevant to each unique sufferer
emphasizing specificity and detail. Information gathering from parents,
questionnaires, diagnostic testing, and
observation is imperative. The more one
understands the more accurate and
appropriate the protocol.
The parent fundamentally is their child’s guiding
light and following the correct approach
nutritionally with the appropriate use of innovative
treatments may brighten the future for the whole
family but most importantly the child suffering
from autism.
Jonathan Tommey is a father with an autistic
child and has dedicated his career as
a qualified practitioner to helping treat
autistic sufferers.
THE AUTISM CLINIC LTD IS ONE OF A FEW CLINICS
THAT SPECIALISES IN AUTISTIC SPECTRUM DISORDERS,
TREATING EACH INDIVIDUAL WITH A UNIQUE AND
SPECIFIC PROTOCOL
Jonathan will be hosting seminars and talking at The International Conference in October.
Please visit the Autism Clinic website for further details.
Competitively priced Diagnostic tests and Autism specific supplements can be ordered through the clinic
For further information
Mobile: +44 (0) 7714 957309 Email: jonathan.tommey@theautismclinic.com
93
The Obstacle
Course
By Gene Hurwin, OTR, MA, OTR/L
Gene Hurwin, OTR, MA, OTR/L, holds a bachelor of fine arts
degree in music and a master’s degree in occupational therapy
from the University of Southern California in Los Angeles and has
more than 30 years of experience in gymnastics instruction. After
completing occupational therapy school in 1999, Hurwin began to
develop the “BIG FUN method,” an incorporation of occupational
therapy principles with gymnastics instruction for the purpose of
E
very obstacle course features, in
some form, a set of hurdles, ditches,
and walls that must be navigated to
reach a desired goal. In the military, these
are laid out on a physical course with
tangible apparatuses. In contrast, often in
life the obstacle course refers to an event
that presents challenges to overcome or
to the daily tasks a person must complete.
As obstacles are met and overcome, the
improving the quality of life for special needs children.
He has written articles on sensory integration, the BIG FUN
Method, and working with the special needs child in a typical
environment, among others, and lectures nationally for organizations
representing therapists, parents, and the gymnastics community. He
currently hosts a bimonthly program on Autism One Radio.
Visit bigfungymnastics.com.
individual begins to create a scaffolding
upon which future and more difficult
challenges might be accomplished.
For our population of special needs
children, an obstacle course includes the
most basic of tasks: dressing, bathing,
toileting, hygiene, sitting at the breakfast
table, eating with their families, riding to
school, and getting from the car to the
classroom, the classroom to the bathroom,
Each successfully met obstacle becomes the scaffolding for the next.
94
THE AUTISM FILE | www.autismfile.com or the cafeteria to the playground. The
hurdles, ditches, and walls are huge, but
the process of growth is essentially the
same. Each successfully met obstacle
becomes the scaffolding for the next.
In meeting challenges and overcoming
obstacles, the brain learns specific
functions. It engages in the development
of “active memory” – a series of
experiences that can be drawn upon for
future use – and, just as importantly, it
connects with “working memory.” Working
memory is the ability to be present in the
moment that is currently unfolding. This
requires alert awareness of environment
and active participation in problem
solving. For example, a person driving a
car on the freeway is engaged in active
memory, using established experiences
and skills. If, however, a truck swerves in
front of the person, he or she will shift
immediately to working memory, taking
in each detail and solving the problem
accordingly. He or she will need to attend
fully to the moment currently unfolding.
He or she will also, most likely, be able
to recall this instance in much more vivid
detail than simply remembering driving the
car down the freeway.
In reaction to the special needs child’s
very specific obstacle course, I create
an actual physical course: a construct of
ISSUE 33 2009
Step 1 of bear walk: Mount
Step 2: Set starting position
Step 4: Dismount
Step 3: Moving through space
95
ladders, tumbling shapes, bars, beams,
unstable surfaces, and swings placed in
a gymnastics environment, designed in
a format specific to each child. Playing
on this obstacle course engages the
special needs child in challenges that
facilitate learning how to learn. The child
is encouraged to engage working memory
to solve each “problem” as it is presented
by the ladder, the beam, or the parallel
bars. He or she develops specific physical
skills to achieve success in each activity
and amplifies the brain functions needed
to complete them. With practice and
repetition, the child’s ability to tackle the
obstacle course of life is enhanced.
A core premise of my work is the
assumption that all children love to play
and that play is a primary occupation
that supports the learning of specific life
skills. If children are intrigued by climbing,
they will be drawn to a ladder, leading to
other ladders. They will buy into “doing.”
When encouraged and instructed on how
to scale this ladder, the child will begin to
accept each level of expectation and, thus,
experience success. Success, for all people,
helps define self-worth and build selfesteem. The scaffolding on which further
skills may be built is broadened.
For recreational coaches and
occupational therapists, the use of
obstacle courses that my staff or I create
provides a defined methodology to
engage a special needs child by presenting
a challenge and the motivation to try.
Unlike current public parks, where
climbing structures are made of fixed
pipe and steel, our courses change daily.
The shape of the course (six to 10 steps
connected in a circle) and the choices of
particular obstacles provide a number of
components. Each component demands
A core premise of my work
is the assumption that
all children love to play
and that play is a primary
occupation that supports
the learning of specific life
skills.
96
THE AUTISM FILE | www.autismfile.com Task Analysis: Looking at the Task from the Child’s Point of
View: Bear Walks
1.Bear walks on (incline) parallel bars
Step 1: Mount
Step 2: Set start position with feet, arms, and hands
Step 3: Move through space
Step 4: Dismount
2.Motor planning used:
Step 1. Mount: Each hand will grasp and hold the distal ends of the parallel
bars preset at designated height. The child will design and execute a path
to achieve the quadruped bear walk (hands and feet contact only) position.
Physical assistance from the therapist/coach may be needed by the child to
mount the bars. Without doing the child’s tasks, the instructor may facilitate
or assist, maintaining the physical, problem-solving, initiation, sequencing
and motor-planning burdens on the child.
Step 2. Set starting position: In the bear walk, each hand grasps the
bar, using the thumb wrap around the bar. Each foot is standing on the
corresponding bar, as is the same-side hand – right foot and hand are on the
same bar, as are left hand and foot. Feet are aligned with the direction of
the bars. “Duck feet” (hyper-turned out feet, with the arch and ball of the
toes making physical contact with the bar) or “pigeon-toed feet” (the larger
toes and the corresponding ball and arch make physical contact with the bar
and the heels are outside the bar’s alignment) are viewed as issues needing
attention. (The child is able to maintain appropriate trunk stability to be safe
on the bars provided a trained therapist/coach is present.)
Step 3. Moving through space: The appropriate gross motor plan is arms
and hands: release-reach-grasp; simultaneously performed by legs and feet:
release-reach-grasp. To execute a coordinated series of complex upper- and
lower-extremity tasks fluidly, the trunk acts as the stable base. Predictable
motor planning sequences of the right hand and left foot allow the trunk
to move forward while the opposing hand and foot act as the momentary
stable bases by not moving. Once the first hand and foot make contact, the
release-reach-grasp mechanism occurs, and an intuitive sway in the trunk
shifts the trunk weight in anticipation of the opposing sides to repeat the
sequence for the release-reach-grasp. Feet and hands should alternate for
each step forward.
Step 4. Dismount: The child selects the best choice based on position and
plan. He or she selects which leg/foot will disengage with the bar and shift
weight to the opposite leg/foot. The weight shifts will allow the opposite
arm/hand to be released from stability tasks and free to move to an
appropriate new position, affording the next shift for descending the lower
extremity, trunk, and upper extremity during the dismount sequence. To
dismount safely, the child is either learning to coordinate his or her body or is
already proficient, or the task of dismounting acts as another motor planning
exercise, demonstrating how the brain has (not) created coordination
between the motor cortex, the visual/perceptual processing and
sensory processing systems.
ISSUE 33 2009
attention to motor planning, sensory
processing, and organizational detail. The
results address function via sequential
motor planning, developing praxis, and
coordination of the visual-perceptual
systems with the motor cortex. This
allows the brain to envision, consider,
and assemble a response to the changing
environment of the obstacle course,
helping the child adapt to the immediate
needs presented.
Let’s take a look at Tommy. Tommy
is 7 years old. He appears clumsy and
awkward, frequently falling or tripping,
and has poor trunk and bilateral
coordination. Grasping and holding onto
stable structures is problematic; he has
difficulty maintaining appropriate grasping
strength and endurance for both gross
and fine motor tasks. He lacks core/trunk
stability and is “floppy.” Poor trunk control
makes attending to classroom occupations
challenging. Improving his upper extremity
strength and endurance to within the level
of his peers will dramatically improve his
classroom performance.
One of the first responsibilities on
Tommy’s therapist/recreational coach’s
agenda will be to continually engage him
in tasks that put trunk stability at the
forefront. As his trunk increases strength
and endurance, he will be able to maintain
and modulate his own arousal levels and
thus attend to tasks with predictable
improvement. A learning curve will begin.
As Tommy’s ability to maintain a proper
sitting position allows him longer, more
frequent, and appropriate focus, he will
develop the platform to attend, thus
increasing his knowledge of how to learn.
The increased knowledge will help him
to attend, which will support focus and
add importance to his improved ability
to maintain the sitting position. Since
development of coordinated motor
planning of the arms, hands, and fingers
relies first on stabilizing the trunk so the
distal body can demonstrate mobility,
independent strength, and endurance,
Tommy will, with reliable trunk control, be
more willing to venture out into tasks and
attempt challenges in which he previously
would avoid engaging.
An important piece of equipment in my
obstacle course is the parallel bars. Parallel
bars don’t move, so Tommy must move
ISSUE 33 2009 on them. To move, he must attempt tasks
that involve sequential problem solving.
The human body has many different ways
of holding, grasping, pulling, pushing,
and moving through space; thus, any task
demanding motion will require Tommy
to problem solve while on the bars. He
will need to answer “How do I do that?”
Through trial and error, he will engage
in both exploration and the discovery of
solutions.
In this process, Tommy’s therapist/
coach addresses Tommy’s unstable trunk
consistently in order to make gains and
keep them. One task used to strengthen
the trunk is the “bear walk.” Using only
hands and feet to make contact with the
stable surface (in this case, the bars),
Tommy will be encouraged to move two
limbs at the same time. Presenting the
bear walk in many different situations
keeps the challenge vivid and motivating.
Simply put, Tommy will start standing
upright. Both arms will need to reach
up and take hold of the bars. He will be
obliged, through problem solving, to
construct a plan of action that gets him
from the ground to on top of the bars,
moving both his hands and feet. He will
then initiate praxis to figure out how he
can get from one end of the bars to the
other. This will require him to shift weight
from one side of his body to the other
side, and he will be guided through the
process of moving forward.
If the therapist/coach finds that Tommy
is not attending to either the exploration
or problem solving when caught in the
moment of “doing,” he or she will act
as a modulator of the learning curve by
bringing attention to the details of the
task, using a physical sensory reinforcer.
A tap on the part of the body that needs
to engage will be followed by a physical
shifting of body weight from a static
position into motion. By moving, Tommy
will be able to regain his ability to be
present in the moment, thus moving back
to working memory, and being able to
continue engaging in the task of moving
across the bars.
Part of the success of my obstacle
course stems from the myriad ways
my therapists/coaches can correct and
facilitate as the child attempts to problem
solve, giving cues and reinforcements
A child who can problem
solve on the obstacle
course can use similar skills
to problem solve in the
classroom, and, eventually,
in the larger world.
which will translate to other learning
opportunities. Another part comes from
the simplicity of involvement. The child
has a specific physical task to complete;
the task is “fun” and the underlying
advances in ability are not the focus of the
child’s attention. The rewards of each small
achievement are strikingly clear and the
child feels the pride of accomplishment
as he or she moves one bar further than
the session before, or climbs a foot higher
on the ladder, or manages to balance a
moment longer on the unstable surfaces.
Parents can support this growth by
initiating a similar methodology at home,
attending to the practice of loving
discipline and high expectations. A future
article will address more specific methods
that parents might want to engage.
In conclusion:
The majority of us have, in some way,
been affected by the “obstacle course”
of the economic recession, and had to
engage in challenges that required us
to learn new skills and use our working
memory to solve problems outside our
usual areas of expertise. Hopefully, our
efforts will lead to success and ultimately
allow each of us to create stronger
scaffolding upon which to build a future.
In much the same way, the special needs
child who finds success on the BIG FUN
obstacle course will have added another
layer to the scaffolding on which he or
she can construct the next phase of life.
A child who can problem solve on the
obstacle course can use similar skills to
problem solve in the classroom, and,
eventually, in the larger world. If we
believe in our children, if we understand
the obstacles and can provide support for
them to navigate the course, we will be
contributing positively to their lives and to
our own.
97
A Father’s Tale
By Charles Durham Marshall
Charles Marshall works in the financial services industry and lives in Scottsdale, Arizona,
with his wife, Lisa, and son, CJ. He is very active with the 501(c)3 organization Dads 4 Special
Kids (www.dads4specialkids.org).
who can easily do things, a child with autism
may need years of coaching/habilitation to
accomplish the same task.
As fathers, we are expected to be the
“fixers,” and the bottom line is that you
cannot easily “fix” autism. What you can
do is hold on to hope, support your wife,
and cherish each minor/major victory as the
equivalent of shooting a winning basketball
shot at the buzzer.
I
n the summer of 2000, I was blessed to
become a father to a very wonderful baby
boy, CJ. I vowed to be Super Dad. We
had a few early health issues typical for a
preemie – survived those and seemed to be
progressing normally up to about 18 months.
At that point, being an involved uncle to
nine nieces and nephews, I started to have
suspicions about my son. In my wildest
dreams, I had no idea the road we were going
to follow.
The nature of dads
The hardest part of this entire seven-year (so
far) odyssey is the fact that, like most men,
I found it extremely difficult to talk with my
family and friends. The reason it is so hard
to talk about your special needs or child with
autism is that others don’t understand it
because they don’t live with it day in and day
out. Unlike a neurotypical 3- or 4-year-old
98
THE AUTISM FILE | www.autismfile.com Getting a diagnosis
Our pediatrician referred us to “the place”
in town for developmental disabilities. After
the several-month wait, we got a diagnosis
of “gifted with learning challenges,” not an
autism diagnosis. We continued to go back,
but we were not satisfied. The “not knowing”
or dissatisfaction consumed our lives. Luckily,
my wife got a referral to our school district’s
preschool program for children with learning
delays. It was the best thing that could have
happened because my son got used to the
school environment. Also, it was through the
school that more than a year and a half later
our son was tested, which led to a diagnosis
of autism.
As we look back now at that time, CJ was
a poster child for an autism diagnosis, which
still frustrates me intensely. My wife and I
were not familiar with autism. When you are
about to have a child, you are not warned
about the signs of autism or special needs.
If I had to do it all over again, I would have
been more aggressive. We thought his lack
of speech might have something to do with
chronic ear infections in his early life. We did
not even know to consider autism.
Then I heard a specialist give a speech,
and I approached him afterward to explain
my son’s issues. The speaker said, “If your
child can tell you the word you missed in
a book when you read it to him, but he is
not talking, that is because of something
else. Your kid’s not talking is a symptom of
something else. Like throwing up when you
have the flu. The throwing up is the result
of the flu. The language delay is a symptom
of a developmental disorder of some kind; it
is not an underlying language problem.” He
encouraged me to continue the fight and get
more testing.
Since he was 2, when I knew my son
had issues but we could not get anyone to
diagnosis them for us, I have rarely gotten
a solid night’s sleep. This has improved
recently because I have made friends with
other fathers of special needs children. The
entire ordeal of misdiagnosis and delay leaves
me wondering to this day if I failed my son.
Other fathers and mothers of special needs
children have shared similar feelings with me.
Life with autism
Here’s what our weekend life was like for
years: My wife and I would devise a weekend
battle plan. We would leave the house at 7
a.m. and take our son to different activities
that interested him. We stayed with that
activity until he lost interest. Then we would
move to another venue and set of activities.
One of us would get dropped off around 1
p.m. for a nap; then we would switch, and the
other would get dropped off at 3 p.m. for a
nap.
The reason we left at 7 a.m. was that our
The reason it is so hard to talk about your special needs
or child with autism is that others don’t understand it
because they don’t live with it day in and day out.
ISSUE 33 2009
son would get up at 4:45 a.m. and announce,
“I am up for the day.” After being up for two
hours, we were climbing the walls, so it was
time to get out. When our son was mostly
nonverbal, he loved to chase pigeons. I freely
admit that I bought four large loaves of bread
each time we went to the park because he
would talk about chasing the birds afterward.
The closest my wife and I have ever come
to a divorce was because my son refused to
get into a bathtub or shower. This meant we
had to bathe him in the bathroom sink and
wash his hair in a booster seat placed on top
of three plastic mats in our living room and
work with bowls and tubs of water. Let’s
just say my wife’s skills as a project manager
orchestrated each home-salon treatment
beautifully. But here’s the problem: men are
from Mars and women are from Venus, and
my lack of organization and communication
skills nearly put us into divorce court. My
wife’s gentle introduction of the bathtub and
other items eventually led to the acceptance
of those items by our son – but it took a long
while.
Once, while trying to earn good hubby
points by giving my wife a break on Saturday
mornings, I enrolled my son in a Little Gym
class. I thought he would take right to the
class. To my dismay, the first two weeks he
stood in the corner and cried for the entire
class. Thinking back on this, it should have
been a red rocket in front of my face, but
that’s Monday morning quarterbacking. I
explained the situation to my wife and, to her
credit, she came the third week, kept him in
a little area until he was comfortable, and by
the middle of that session people said they
did not recognize the child because he was so
happy.
Also, at birthday parties for neurotypical
kids, the children would sit for a magician
or want to learn games. But not my son. At
birthday parties, he stuck out because we
would be in the bounce house or going down
the slide or running up the hill over and over
again.
Up until recently, going to a sit-down
restaurant would entail bringing special food,
a massive quantity of books, and at least one
or two electronic devices while promising him
a reward for being good.
Another challenge has been being away
from home for a night. I bought a VCR/
TV player for $80 when my son was 2 so
he would always have his favorite videos. I
have spent a significant amount in tips to
make sure the beloved VCR/tape player has
ISSUE 33 2009 survived transport on trains and hotel luggage
carts on the few occasions we have attempted
short trips.
Like most autistic children, my son has
a very select diet. Every time we travel, we
bring our own cooler, the aforementioned
VCR player, and now we have our own
“portable” microwave oven. We recently
stayed at a very nice resort that has the
top-rated chef in our state, and I brought my
microwave oven to the hotel and walked past
the restaurant with it. What my son lives on is
not on any hotel menu. With the microwave,
we cooked his meals in the room and helped
him chill out, so we could travel with reduced
stress.
I used to take the fact that my son was not
toilet trained very hard. I did this until the day
that the state administrator who approved us
for services pointed out to me, “Mr. Marshall,
you have nothing to be ashamed of. I have
worked with special needs children for two
decades. Over 60 percent of them, when
they start school, are not toilet trained.” This
came as a great relief to me because several
people in my life had stated we were bad
parents because our child was 4 and not toilet
trained.
One of the limitations of living in the state
we live in is the lack of specialized therapists
in speech and occupational therapy. For 18
months, I drove my son the equivalent of 90
miles a week, after work, in rush hour traffic,
to get him the services he needed. During this
time, I felt totally isolated from the rest of
the world because all I did was drive. Went to
work and drove. I have not gone to a happy
hour or an after hours work function with my
co-workers in four years.
I am sure the afterschool program
receptionist thought I was mad because I
would run in, get my kid, and get out, no
matter how much they wanted to talk to
me. I just told them “call me.” Why? I had to
get on the road. I got tired of the radio and
bought some different tapes of my favorite
groups, so my son knows quite a few classic
rock songs.
Understanding from others
A parent of a special needs child quickly
learns who his or her true friends are.
Unfortunately, 95 percent of your friends
evaporate. Once you find fathers of other
special needs children, your isolation can
diminish.
My sister’s children were blessed to have
sports and afterschool activities dominate
their lives. They do not understand why, to
this day, my son has not been on one sports
team or in one T-ball or YMCA basketball
game. They do not understand that, for my
son, I can have either a sports jock or a child
who can write legibly and perform basic life
skills but, at least for now, not both.
My immediate family, for the most part,
lives thousands of miles away, and my son
has difficulty traveling. It is hard for them to
fathom why I won’t meet them at wonderful
resorts in distant locations. My family has
come to visit a few times. Unfortunately,
during these visits, I have had to decline
certain invitations because I will not put my
son in a social situation where the outcome is
sure to be stressful. We tried early on, and it
was a disaster that set us back months. Often
family members can’t understand why special
needs parents need to stay home so the OT/
speech provider or hab worker can come to
work with the child instead of going out and
socializing. Recently when my family was
visiting, my wife went on her first overnight
trip since my son was born, and naturally our
babysitter was on vacation. I would not take
my son out of his regular Sunday routine
when my family was in town, and I know they
were very unhappy with me. However, I have
learned that I need to keep the drama caused
by change in our lives to a minimum.
My family knows that when I was single,
I used to know where the assistant line
coaches of NFL teams played college ball.
From 2002 to 2007 I might have watched
99
the equivalent (20 minutes here, 40 minutes
there) of one entire NFL game per season.
Instead of watching incredible catches and
tackles on the field, we were engaging our
son on family outings, trying to get through
to him when he was isolated in his own
autistic world and introduce him to our world.
My family does not really understand this.
I am not a drinker; however, the first day
my son went up to a kid at McDonald’s
Playland and asked him to play, I wanted to
buy a bottle of Dom Perignon champagne. It
had taken me well over a year to help him to
accomplish that.
School support
The Battle of Shiloh in the Civil War was the
day of reckoning that showed both sides
how long and bloody the war was going to
be. My day of reckoning was the first day
of open house for kindergarten at my son’s
elementary school. At the time, my son was
not very verbal, but he could read. We got
to the open house, and he read every kid’s
name from kindergarten to fifth grade,
looked up at me, made eye contact (which
is very hard for an autistic child to do) and
asked, “Dad, where is my name?” Being
dumbfounded and heartbroken, I walked
into the school’s office and was informed
that they did not put the special education
children’s names on the board because
they were not sure which class they would
transition to. To this day, my blood boils
when I think of this incident. I have never felt
so helpless as a father.
The other dreadful experience that week
was when the short bus started stopping
at my house. There are three excellent
elementary schools within a five-minute drive
of our house, yet my son needs to be bused
45 minutes each way each day to a school
with services for him. Another part of the
isolation is that we have no neighborhood
friends for our son.
Special educators are, for the most part,
very well meaning and very dedicated
individuals who are trying to help special
needs children; however, dealing with
them has involved one snafu after another.
My wife, in her professional capacity, has
successfully negotiated with two of the
largest Fortune 50 companies, but to get
our son out of a self-contained classroom
setting we had to hire an advocate. After
three years of IEP (Individualized Education
Program) meetings, we were emotionally and
physically worn down. It took us six and a
100
THE AUTISM FILE | www.autismfile.com half months of negotiation and meetings to
get him out of that class. During that fight,
we were in survival mode – we paid the bills,
stayed healthy, and made sure food was
in the house. That was about it. I believe
parents should not go into an IEP meeting by
themselves. It is like negotiating against new
car sales staff. The school knows all the tricks,
and you are at a total disadvantage until you
learn them. So, bring someone with you.
I strongly recommend documenting
everything. During the battle of getting our
son out of the self-contained classroom,
our documentation was so extensive I
believe school personnel did not want to
take the chance of a due process hearing.
Of course it took time. In fact, we had to sit
through the first IEP meeting for two and
a half hours, during which time we were
told our child was a behavioral problem
who needed drugs. After we showed them
some of our documentation, our child was
recharacterized at the next meeting as an
extremely intelligent young man who was a
bit impulsive.
I could tell by the second week of my
son’s first-grade year that the year was
totally lost because of the lack of funding
and overburdened aides and teacher.
Also, the teaching techniques used in the
self-contained autism classroom totally
contradicted the organized chaos of a regular
classroom. Bluntly speaking, Custer did
better at the Little Big Horn than my kid did
at his first try at inclusion part-time in first
grade. For the record, in his second attempt
at first grade (we fought and made them let
him repeat first grade), he is flourishing.
Lessons learned
I owe a large debt of gratitude to our
babysitters. We live in a community
where there is a large state university, so
I advertised on its Web site specifically for
early childhood development, education,
and speech majors. To this day, most of his
babysitters are still in touch with us, and
some are still a part of our son’s life. We
have also been blessed with some excellent,
dedicated, passionate therapists who have
stated they are reinvigorated and reenergized
by the commitment, dedication, and effort
we put into our son to help him reach his full
potential.
For me, one of the hardest things to do
as a father has been to walk the walk after
talking the talk when it comes to adjusting
my expectations for my son. My son has
learned to play baseball; however, he still
takes batting practice sitting on top of the
slide. Though he can hit the “T,” his choice
is to sit on top of the slide and let me pitch
balls to him. I feel strange every time, but I
still need to go out there and play with him
the way he wants to play.
Having to deal with the stresses of autism
has, at times, put a significant strain on our
marriage. One way we deal with this strain is
to have one date night every week. I would
encourage anyone who has children, special
needs or not, to have a weekly ironclad date
night. In our case, we hired one babysitter to
work one shift every week for this purpose.
Even if my wife and I were too tired to talk,
we would at least go out for an hour to
a local restaurant for a bite to eat and be
together. Like most fathers of special needs
children, I am truly indebted to my wife. Her
love of our son and organization of therapies
is amazing.
If you are reading this article and you are
not a parent of a special needs child and
your sibling or friend is and you want to help
him or her, it’s really easy. Offer to get to
know the child so that Mom or Dad can get a
two-hour break. Offer to have them over for
dinner or bring dinner in for them. If they are
overwhelmed by the school situation, help
them find an advocate. Have your child play
with the special needs kid (IT WILL MAKE
THEIR DAY).
I have learned about the important things
in life from my son: a good sense of humor,
the joy of going somewhere as a family, and
the power of an infectious laugh. What I
found out from other special needs fathers
is that I should be eternally grateful for my
son because, compared to what other fathers
have to deal with, I really have very little to
complain about.
As a nation we need to tackle autism now
because by all indications it is only going to
get worse. Yachting is a rich man’s sport;
autism is a billionaire’s disease.
I have learned about the important things in life from my
son: a good sense of humor, the joy of going somewhere
as a family, and the power of an infectious laugh.
ISSUE 33 2009
“Our message is clear:
We stand united.
We are a powerful
alliance. And we
do deliver where
governments
have failed.”
Polly Tommey
Minneapolis, Minnesota
Canada
Kentucky
Dallas, Texas
North East Scotland
101
ADVOCACY
Autism and the
Military Family
by Lisa Rupe
F
amilies who have children with
autism might cringe at the thought
of moving out of state, Dad going
away on a business trip, or changing
the child’s school. These are the kinds
of things that military families deal with
regularly. Here’s a brief glimpse of some
of what military families face in addition
to autism itself.
TRICARE
TRICARE is the military health insurance
plan. It is an entitlement for service
members – they do not pay anything for
health care other than the service to their
country. Having free health insurance
makes one more likely to use it. Prenatal
visits are free, doctor’s office visits are
free, immunizations are free, prescription
drugs, and any over-the-counter
medication available at the military
treatment facility (MTF) is free.
Using an MTF for your family’s care
has its pluses and minuses. If you are
lucky enough to have your child see the
same pediatrician every time you go,
and this doctor understands autism and
your desire to treat your child’s medical
problems, you are the envy of many
families. Finding a doctor who will work
with you and write referrals is not rare,
but doctors also get reassigned every few
years, so finding a good one and keeping
him or her is not that easy. We had a
good doctor who moved, and we decided
to petition the hospital for a civilian
primary care manager. At that time, the
hospital was short staffed and constantly
changing. We were granted our request
and picked a Defeat Autism Now! (DAN!)
doctor for our kids.
TRICARE covers just about everything
that is related to the treatment of autism.
There are two major plans for TRICARE.
One child in 88 in the military has autism, but one
service member in 10 has a family member with a
special need or disability.
102
THE AUTISM FILE | www.autismfile.com TRICARE Prime has no co-pay if you
use the MTF. Prime requires referrals
for everything from your primary care
manager. TRICARE Standard requires
no referrals. You can go to any specialist
(e.g., speech therapist, occupational
therapist, allergist, neurologist) you
want, but it has considerably more outof-pocket expense. TRICARE Standard is
worth the extra money if you can afford
it. Visits to DAN! doctors are billed at
well above the TRICARE accepted rate.
TRICARE pays the allowable amount for
an office visit and you pay the difference.
Families with a TRICARE Supplement
(sold by an outside company) do not
have to pay the difference in billing
and they don’t pay the co-pays either.
Most laboratory tests ordered by regular
physicians as well as DAN! doctors are
covered by TRICARE.
TRICARE is like any other insurance
company, and they don’t want to pay
if they don’t have to. For instance,
they require a copy of your child’s
Individualized Education Program (IEP)
if you are claiming speech therapy. They
want to make sure you are not already
getting speech therapy at school. You
also have to deal with problems that
arise because of a special need. Most
people do not require anesthesia to do
an MRI. But a child with autism who is
never still will – and then you’ll work to
have that covered. I would be surprised
to find a parent of a special needs child
who did not know the phone number
for TRICARE. Hyperbaric oxygen is not
covered under TRICARE. This is very
ISSUE 33 2009
Most people do not require anesthesia to do an
MRI. But a child with autism who is never still will
– and then you’ll work to have that covered.
disappointing because there are so many
hyperbaric chambers on bases, especially
at the amphibious bases. Supplements
are covered if they are available at the
MTF pharmacy or if they contain at least
one prescription ingredient.
Exceptional Family Member
Program (EFMP)
This mandatory enrollment program
was designed with good intentions. It
is supposed to help families only be
moved to areas that could support family
members’ special needs. Educational
services and the availability of applied
behavior analysis (ABA) therapists,
speech-language pathologists, and
occupational therapists (or rather their
wait lists) are not considered as highly
as hospital services. This approach
does not fit well for autism. EFMP
coordinators on individual bases should
be helping families access the medical
and educational services they need. This
is happening on a good number of bases
where the office is staffed with enough
people to handle the caseload or there
are local support groups that can help
with the personal attention. The U.S.
Coast Guard does not participate in this
program. It has its own special needs
program.
An Army wife reports, “We are on our
third move and third deployment in four
years. I struggle supporting my husband’s
battalion and both my sons. Suicide rates
and divorce rates are up for the Army,
add special needs to the mix, and it is
bad. Bottom line, we need help and we
are not getting the support we need.”
The training and knowledge of
coordinators varies widely within
each branch of the military. There is
inconsistency in EFMP coordinators
matching families up with new locations
that have the services their children will
need. For example, an Air Force family
has orders to a location they know will
not have the services their son needs.
ISSUE 33 2009 They will go to a medical screening
before moving to the new location, a
review of all the services their son needs
will be done, the family will fail the
review, and they will need to have new
orders issued. The consequences of this
are many, such as families not having
enough lead time to get on waiting lists
for services in the area where their family
eventually ends up.
Permanent Change of
Station (PCS)
That’s what the military calls “moving.”
This usually happens every two to four
years, but there are many exceptions.
Some families look forward to the
possibility of better services, and some
are very sad to have to leave wonderful
therapists and a great IEP. The packing
part is one of the easiest things in the
military. They come to your home and
pack everything, make sure you have
emptied the trash cans before the
packers arrive, and have all your kids’
favorite things safely put away for the
trip.
Base housing is often the most
convenient place to live but may have
a waiting list, sometimes more than a
year long. Often, the service member
will go ahead and get on the waiting
list for housing while the family stays
behind until the base housing is available.
In other words, in order to get on this
waiting list, the service person must
move to the new location in advance of
the rest of the family. This temporarily
splits up the family. Buying or renting
in the civilian world is a great option
in many markets, but for many young
families, base housing is the only option
for financial reasons. This forces the
family into the situation where the family
is split up.
Many bases across the United States
have privatized their housing. The
private firms taking control of military
housing meant huge remodeling or
complete rebuilding that really needed
to be done. But some of the rules and
regulations regarding those homes
have not been understanding of or
compassionate to military families with
special needs. Physical disabilities are
often accommodated, but environmental
toxicity issues and allergies often have
their needs ignored. A Marine Corps
family had to file a Congressional inquiry
for any type of action to address their
housing situation. Their house was mold
infested and all the family members
developed terrible allergies. As a result
of the inquiry, the private housing office
agreed to let them move into a different
house, but the family had to pay to have
the carpet removed and stored and had
to pay for the new flooring.
Getting your house in order might
be the most urgent thing to do after
moving, but setting up your child’s care
is next. Continuity of care is a big issue
affecting the military family. Many times
parents have already contacted and
set up appointments and evaluations
before the move or at least have done
the research. You won’t know exactly
what services you are receiving from the
school district until you hold a new IEP.
We had a six-month gap in ABA for our
son with our most recent move. TRICARE
had misplaced the paperwork for the
Board Certified Behavior Analyst (BCBA)
who agreed to jump through hoops for us
to become TRICARE authorized.
Medicaid Waiver
Medicaid provides medical assistance to
families with low income, but some states
also provide a waiver that covers children
with a chronic disability regardless
of income. Every state manages the
Medicaid waiver system a little bit
differently, but all have a waiting list.
Most parents do not even bother filling
out the paperwork when they know they
won’t be there long enough to get to
the top of the list. They really should fill
it out – it would at least make the state
aware of the true need. If parents are
lucky enough to be in one place long
enough and to get services, they will lose
them when they move to another state
and also will have to start all over again
at the bottom of the list.
103
ADVOCACY
Extended Care Health
Option (ECHO)
Children with disabilities are given an
additional health benefit in the military.
The ECHO program allows $36,000 per
year, but that still did not buy a lot of
ABA. Respite is offered as part of the
ECHO program, also. You need to have
an ABA program to use ECHO funds, but
you also need to have money left over
from your ECHO funds to pay for respite.
Some branches of service provide respite
programs apart from ECHO. Another
limitation of the original ECHO program
is that the person who actually works
hands on with your child has to be a
BCBA. This is unheard of in some areas
of the country. BCBAs are supervisors.
College students or recent college
graduates studying for their BCBA exams
are the ones who do hands-on work with
the children. Some families choose to
self-pay, but that is not an option for
most families.
Norfolk, Virginia, is home to the largest
Navy population on the East Coast.
Keri Peko, founder of Mea’Alofa Autism
Support Center (MASC), an ABA clinic in
the Norfolk area, states, “I realized that
if we weren’t able to afford to provide
our daughter with what she needed,
104
THE AUTISM FILE | www.autismfile.com surely those of a lower rank or those
with multiple children affected by autism
wouldn’t be able to.” She started the
clinic employing one BCBA, who was also
a Navy wife, which has grown to serve
more than 40 children in the area, many
of whom are military kids.
A Congressional inquiry was filed in
2009 to study autism services in the
Camp Lejeune area of North Carolina.
Camp Lejeune is the largest Marine Corps
base on the East Coast. One-hundred
and six children with autism spectrum
disorder (ASD) reside in the area. Eleven
are enrolled in the ECHO program. There
are no ABA network providers. There are
200 people on the waiting list for ABA
services. As a result of the inquiry, the
Marine Corps is pursuing the concept
of establishing a treatment center of
excellence for families with disabilities at
Camp Lejeune.
According to 2008 data, only 10
percent of military family members
with an ASD are enrolled in the ECHO
program worldwide. That means more
than 11,000 children are either not
enrolled in the program because there
are no providers in the area, or they are
unaware that the program is available.
In 2008, TRICARE started an Enhanced
Access to Autism Services Demonstration
(Demo) to test the possibility of using
non-BCBAs with the children. The Demo
program utilizes non-BCBA therapists
allowing for more hours because they
are less expensive. TRICARE listened to
parents and responded positively with
this new program. My son receives eight
hours per week of ABA therapy via the
Demo program. The hours are still a far
cry from the 25 hour minimum for ABA
therapy recommended by the American
Academy of Pediatrics, but it’s a step in
the right direction.
Parents have once again mobilized.
The 2010 National Defense Authorization
Act bill in the House of Representatives
contains language that provides ABA as a
TRICARE basic medical service – moving
it out of the ECHO program and into
regular TRICARE. Being in TRICARE as
a medical benefit also makes it available
to the children of retirees. At the time of
this writing, similar Senate wording was
not in the Senate version of the bill. This
kind of legislation would be tremendous
for the autism community.
Deployments
Many military children have trouble
when a parent deploys for a long period
of time, but it may be even harder for a
child who cannot communicate his or her
feelings or just doesn’t understand where
his or her parent went. And each child
reacts differently to changes in family
dynamics. A joint-spouse (both parents
in military) Air Force family talks about
their son’s regression during deployments
saying, “He would shut down for a
while, regain ground, and regress again
when Dad would return.” Of course, kids
grow up while their dad is away, and my
husband being able to objectively see
all the progress Kyle made while he was
gone was encouraging, too. Now that our
son can say “Daddy,” he asks where he is
each day that Daddy is not at home.
Resources
Military parents of disabled children are
the best resources for each other. Almost
every day I see messages on online
boards asking for advice about where to
go next, how to apply for compassionate
reassignment (a request to move because
ISSUE 33 2009
Autism Mothers: Military Moms
the services your child needs are not
available), or how to go about getting a
referral. Specialized Training of Military
Parents (STOMP) has one such list of
parents from all over the world. (See
also www.stompproject.org.) STOMP
was started by a parent and offers
training to other parents. Another parent
and service member, Nickolas Sabula,
is building American Military Families
Autism Support – a Web site for military
families created by military families.
AutismSalutes.com was created and is
maintained by Angela Warner to keep
parents updated on legislative efforts
related to the military.
One child in 88 in the military has
autism, but one service member in 10 has
a family member with a special need or
disability. The care of special needs family
members affects the whole military
as a preparedness and reenlistment
issue. I hope that some higher ranking
officers will read this article and see the
opportunities presented to help these
families. Many thanks to the numerous
families I spoke with for letting me share
their stories – you are the best, and your
continued advocacy for your children is
what is going to change things.
Photography credit: Louis Felix Photography
www.louisfelix.com
ISSUE 33 2009 The Rupe Family
Lisa Rupe is mom to 8-year-old Kyle
and 6-year-old Ella. Lisa’s husband, Lt.
Comdr. Ryan Rupe, is a Navy Chaplain
currently serving with the U.S. Coast
Guard in Milwaukee – the hometown
of both Ryan and Lisa.
Kyle was diagnosed at age
28 months in 2003 in California
when Ryan was stationed at Camp
Pendleton with the Marine Corps.
Lisa knew Kyle had a speech delay,
but her only point of reference for
autism was Rain Man. She did a lot
of Internet research and stumbled
upon Talk About Curing Autism (www.
talkaboutcuringautism.org) and
the Autism Research Institute (www.
autism.com), both based in California.
Just after Kyle’s fourth birthday
he moved into his fourth house and
started his third school in his third
school district. He must have thought
this was normal and Lisa thought the
three houses in one calendar year
would be too much, but he handled
it well, being more flexible than many
children with autism.
Lisa managed the three-to-six
month ship deployments in Virginia
with a little help from her visiting
family. For the big Iraq deployment,
she felt she needed more help – and
better conversation at home. So she
had Russian exchange students for the
two school years during which Ryan
was gone.
This spring Kyle turned 8 and
will be attending his neighborhood
school with his little sister for the first
time this fall. Kyle is still considered
nonverbal, but the words are coming.
He has a great home verbal behavior
program and should receive his
Medicaid-funded ABA waiver slot this
fall. The Rupes have been treating
Kyle biomedically, starting with the
gluten-free/casein-free diet shortly
after he was diagnosed.
Lisa is a full-time mom and autism
volunteer and advocate working
mostly on military issues, for Autism
One in media relations, and cocoordinating the Wisconsin chapter of
Talk About Curing Autism.
105
BIOMEDICAL
Helping Improve Brain Function
by Susan Vaughan Kratz, OTR, CST
Susan Vaughan Kratz, OTR,
CST has 26 years of occupational
therapy experience as well as
specializing in neurological
rehabilitation and pediatrics. She
holds specialized certification
in sensory integration (SI)
and neurodevelopmental
therapy (NDT) for pediatrics
and craniosacral therapy
(advanced practitioner). Sue
is also a preferred provider of
The Listening Program® from
Advanced Brain Technologies,
a music-based sound therapy
program that has been clinically
proven to improve auditory and
listening skills.
Among others, Sue has
experience successfully treating
the following conditions: autism;
head injuries; learning disabilities;
seizure and other neurological
disorders; sensory integration
and modulation dysfunction;
feeding difficulties; cerebral
palsy; and dyspraxia.
Susan Kratz is the director of
Special Therapies, Inc. Please
visit www.specialtherapies.
com.
106
THE AUTISM FILE | www.autismfile.com The Upledger model of
autism spectrum disorder
Craniosacral therapy (CST) dates back to
the 1970s from the clinical research of
osteopathic physician John C. Upledger.
Some of the first human subjects he
offered his treatment ideas to were
hospitalized children with severe autism.
His model of autism spectrum disorders
(ASD) is based upon many years of using
craniosacral therapy methods in his
clinical practice. According to Upledger,
ASD is related, in part, to a loss of
flexibility and probable inflammation
of the membrane layers surrounding
the brain. This argument is further
supported by research at Johns Hopkins
University showing “increased levels of
pro-inflammatory cytokines, neuroglial
activation and inflammatory changes”
in the cerebrospinal fluid of the autistic
patients studied. 1,3
This compromise can create a restrictive
force on the brain tissue that may cause
strain on different brain structures.2 When
different brain parts have undue strain
on them, the osteopathic model states
that dysfunction follows. Behavioral
challenges can be associated with specific
brain area dysfunction. For example, the
hypothalamus regulates internal body
functions such as temperature regulation.
The reticular activating system regulates
sleep cycles. The autonomic nervous
system regulates stress responses and
the ability to deal with fight-or-flight
regulation. The limbic system regulates
emotional reactions to sensory information
as well as down-regulating from reactions
of stress. Cerebellar dysfunction is related
to sensory motor and coordination
difficulties among other skills.
When tension exists in the tissues that
surround the brain, the fluids that flow
through and around it can be blocked. The
fluid delivers nutrients, oxygen, hormones,
and neurotransmitters as well as
transporting wastes and toxins away. The
lack of healthy fluid exchange can further
irritate and inflame the system adding to
the dysfunction of the brain.
What is observed as typical ASD
behavioral impairment in sensory
processing, social skills, communication
skills, and thinking styles might be the
effects of inner chaos created, in part,
by the abnormal grasp, squeeze, and
irritation of the membranes on the brain.
Craniosacral therapy has been shown to
help the individual with autistic features
gain a calmer and more relaxed state of
being by decreasing structural stress and
strain. It is also theorized that when the
brain can achieve this state, it is in a better
position to heal and reorganize itself.
That being stated, Upledger and his
proponents stress that CST does not
cure autism and its related difficulties.
CST does not treat the “behaviors of
autism.” It does, however, treat the brain
dysfunction of autism. It can augment and
enhance the effects of other strategies.
This article hopes to summarize how
one occupational therapist has included
advanced levels of CST within her
practice of sensory integration and other
neurodevelopmental treatments for people
of all ages.
ISSUE 33 2009
What is the craniosacral system?
The three layers of membranes that
surround the brain and spinal cord
(meninges) plus the volume of cerebral
spinal fluid constitute the craniosacral
system. The tissues extend through the
bones of the skull, face, and mouth (the
cranium), and then down to the tailbone
(the sacrum). Not only does this system
protect the brain and spinal cord as a
shock absorber, but it also serves to
facilitate the electro-chemical conduction
of nerve signals. As cerebral spinal fluid is
produced within the brain itself, it swells
the cranium cavity. The fluid is reabsorbed
once reaching a certain pressure gradient
and the brain narrows and contracts. This
cycle creates the craniosacral rhythm,
which can easily be detected throughout
the body as the fluid courses through its
pathways. The sensation of feeling this
rhythm is similar to detecting the subtle
movement of fluids within a full water
balloon held in one’s hands.
The actual method of CST
CST is often referenced with the older
practice of cranial osteopathy. This
treatment style differs from CST in that
osteopathic doctors attempt to improve
the bone structure of the head by
manipulating the spots where head bones
join together. Dr. Upledger theorized that
the problems aren’t held in the bones
as much as the problems are held in the
underlying tissues. The CST method is
for the therapist to place their hands on
the bones and use them as “handles” to
ever-so-gently stretch the underlying
membranes. Basic CST is, in essence, about
treating the membranes and helping to
improve the flow and exchange of fluids. It
is not about realigning head bones.
How is craniosacral
therapy performed?
It is performed by a person trained
specifically in the methods of detecting
craniosacral rhythm using specific locations
of the body where it is most helpful to
release the connective tissue system. The
meninges are part of the connective tissue
system. Using a light touch, generally
no more than the weight of a nickel, the
practitioner monitors the flow of the
rhythm to detect potential locations where
ISSUE 33 2009 CST with a person who can lie still on a table
restrictions and imbalances are held in the
tissues. Then, gentle stretch is placed upon
these tissues to help soften, lengthen, and
release restrictions.
Think of the analogy of trying to get
Saran Wrap to smoothly cover a loaf of
bread, but it becomes folded or twisted.
The meninges are a lot like that as it wraps
around the brain and spinal cord. The goal
of this therapy is to smooth and straighten
the tissues so the organ underneath it
functions better. (This therapy also can
address other health issues in other organs
and areas of the body. The techniques are
the same as when working on the nervous
system.)
When working with an ASD individual,
the initial focus often is on the cranium to
locate an area that has the greatest motion
response to the craniosacral rhythm.
Delicate release and pumping techniques
are used to create improved motion in that
area. The increased motion is used as a
dynamic biomechanical tool – one hand is
used to continue to increase motion and
direct fluid flow, while the other hand is
used to encourage motion in non-moving
areas. Little by little, small changes create
larger changes that enhance the mobility
of the whole system.2
Increased balanced motion of the
membrane surrounding the brain helps
flush toxins and inflammation out of the
brain tissue. As this occurs, it naturally
can elevate biochemical processing, which
increases the function of neurons and
neurological pathways. Newfound motion
of the brain tissue and fluid helps decrease
the abnormal and often enormous strain
the brain has been under. This allows the
brain cells a greater ability to process and
react to information of all sorts.2,1
Craniosacral therapy is not just intended
for the effects of autism; it is a treatment
of choice for the whole body since tissue
restrictions anywhere can adversely
affect the membrane surrounding any
organ or structure. CST helps elevate the
body’s natural healing and compensatory
mechanisms by facilitating neurological
function. This, in turn, can elevate the
structure and function of the body as a
whole, thereby aiding the correction of
other dysfunctional systems such as the
digestive and immune systems.2
Some detractors against craniosacral
therapy
Some people have intensely argued that
recognizing craniosacral rhythm has
been proven to be inconsistent between
multiple therapists and therefore the
entire theory is flawed. However, this
argument only suggests that recognizing
the rhythm may be difficult to detect
and record by people who have not been
trained to perceive the subtle rhythms
that are proven to exist in the human
body. It does not prove that the rhythm
does not exist, nor that this intervention
has no merit. The scientific evidence of
the craniosacral system’s existence is very
well documented. Neurosurgeons even
recognize that the meninges pulsate.
Increased balanced motion of the membrane surrounding the
brain helps flush toxins and inflammation out of the brain tissue. As
this occurs, it naturally can elevate biochemical processing, which
increases the function of neurons and neurological pathways.
Newfound motion of the brain tissue and fluid helps decrease the
abnormal and often enormous strain the brain has been under.
107
BIOMEDICAL
CST with a child who needs to move and experience sensory input in order to tolerate the light
touch of CST
Clinical data on the outcomes of the
therapy are being collected worldwide.
Several clinical trials for a variety of
ailments are currently in process.
Indications for craniosacral therapy:
1.Self-injurious behaviors, such as
head banging, hair pulling, biting,
teeth grinding. These pain-inducing
behaviors may be a result of coping
with a greater pain within the
individual’s nervous system. Tight
membranes can hurt.
2.Extreme stress behaviors and a
constant state of fight-or-flight,
aggression, or fear responses.
3.Sensory motor behaviors where an
extreme need to get deep pressure
input is frequent, especially pressure
to the head.
4.Symptoms related to events such
as high fevers, illnesses, or vaccine
administrations.
5.Birth injury, such as where the birth
process was prolonged, induced
with strong medications, any use
of vacuum extraction, or any other
birthing experience that suggested a
physical struggle.
108
THE AUTISM FILE | www.autismfile.com One case study:
Michael is currently 15 years old. He has
been receiving craniosacral therapy from
advanced level trained therapists over
the span of five years. His changes can
be, in part, attributed to his responses
to CST because he was receiving no new
interventions, no additional therapies
beyond his long-term established
Individualized Education Program, no
medical interventions, no changes in his
special education environment, no dietary
changes, and the family situation remained
steady and stable.
Michael was initially referred to our clinic
for additional help to address ongoing
and newly occurring difficulties in his
manifestation of autism spectrum disorder.
This included severe mood swings, severe
behavioral problems, aggression towards
others to the point of hurting them,
self-abuse at a high level, and difficulties
with self-control and self-regulation.
Michael was 10 years old on admission
and essentially nonverbal, though he was
able to utilize some rudimentary nonverbal
communications with those familiar to him.
He was independent in his ambulation and
could follow some simple verbal directions
from his caregivers.
Family was very concerned about
his behaviors for safety and staff
management. His family physician had
been unable to identify any physical
etiology, and he had not yet entered
puberty. He was very tense almost all of
the time, and this could escalate quickly
into a high pitched “yell.” He would then
run around hitting and scratching people.
This most often occurred at mealtime,
both if he was fed separately and if the
family tried to eat together. There were
outbursts occurring at bedtime, sometimes
before being put to bed and sometimes
after he was in bed for a while. Once
asleep, Michael seemed to sleep soundly
and could sleep up to twelve hours. Falling
asleep, however, was the habitual problem.
Extensive sensory motor and sensory
profiles were taken as baseline, along
with functional observations and activities
of daily living. Sensory processing
dysfunction included: auditory processing,
self-regulation with sound intolerances,
vestibular processing concerns, multisensory processing, lowered endurance
and muscle tone, lowered strength,
behavioral and emotional modulation
to sensory input, inattention and
distractibility to some input, and poor
registration to input (proprioception –
body position sense).
Michael required a variety of levels of
assistance for all of his self-care abilities.
Michael needed verbal cues and frequent
physical prompts to wash and dry his
hands and to put on his clothes and shoes.
He needed clothes laid out and shoes
opened and handed to him. He could
not orient right and left sides of clothing
items. He could eat with a fork and spoon
but needed his food cut. He was bladder
trained and could self-toilet, but he
needed to be taken or reminded constantly
to avoid accidents. He could do a bowel
movement on the toilet only if directed by
an adult who was monitoring a schedule.
He had frequent incontinence of bowels.
Initial treatment plan:
A trial of craniosacral therapy to the
meningeal tissues, dural tube, intracranial
membranes, as well as supporting fascial
network was instituted in the fall of 2004.
The therapist providing the training was
an occupational therapist who had 20
ISSUE 33 2009
years experience with sensory integration
and neurodevelopmental therapies for the
entire autism spectrum. Weekly one-hour
sessions were scheduled as the initial trial.
Within three months, Michael’s responses
and outcomes gave valid reason to
continue the interventions.
Subjective clinical findings in the initial
stage of CST included: significant cephalad
drag on dural tube (membrane surrounding
the spinal cord); cranial base compression
with suspected tension on vagus nerve at
osseous outlet; circular compression over
superior skull (vacuum extracted birth)
with cephaloplagy (misshapen) of parietal
bones (top of head); bilateral temporal
bone compression (bones behind the ears
were pulled inward tightly); and restricted
intracranial membranes in all directions (like
shrink-wrapped plastic a size too tight).
The first aim of craniosacral therapy is to reduce any
tissue tension or restrictions on vital nerves and centers
that may be contributing to that sympathetic and
chronic state of stress.
craniosacral therapy is to reduce any tissue
tension or restrictions on vital nerves and
centers that may be contributing to that
sympathetic and chronic state of stress.
Michael was demonstrating a positive
response to the intervention in that regard.
Michael still was demonstrating
hypersensitivity to sound. He was
extremely sensitive to any intervention
in and around the vestibular apparatus
or the temporal bones (bone where the
ears are attached). In fact, he vomited on
two occasions with minimal treatment to
Following is a summary of the collected observations from family, school special
ed staff, and speech therapists of changes and progress (some expected, but some
surprising) Michael demonstrated following the initial six sessions over the span of six
weeks and five hours of direct intervention:
1.Cessation of all headaches (unexpected progress so not identified as a specific need
at onset of treatment). Family members were certain when Michael had his frequent
headaches.
2.Increased tolerance of other students around him at school with an obvious reduction
in aggression.
3.Better work performance at school (general observation, not specifically measured).
4.Very few episodes of incontinence, even using the bathroom at school. He previously
would never use the school’s bathroom.
5.Noticeable reduction in aggression to others outside of school.
6.Purposefully seeking out others to play with, instead of hurting them.
7.Increase in active attempts to talk, verbalize, and vocalize.
8.Typing better with speech therapist and paraprofessional at school in early facilitated
communication efforts.
9.Observable improvement in deep inhalation with respirations. Prior to intervention,
breathing was rapid and shallow.
10.Having better days, in general, the first two weeks. However, Michael did have a few
smaller episodes the last two weeks of treatment. Grandma was taught the technique
of inducing a still point (which is believed to induce a parasympathetic state) and
Michael then slept through the night and had a very good day the next day.
Therapist’s interpretation
of responses:
Several of the noted changes can be
attributed to improved parasympathetic
functioning of the nervous system with
a reduction in Brandon’s sympathetic
bias (a common struggle with sensory
dysfunction). With chronic sympathetic
nervous system firing, many other areas of
function can be impaired. The first aim of
ISSUE 33 2009 these areas. I suspect he has a significant
vestibular processing issue and great care
will be given moving forward to avoid
stressing that center, while at the same
time attempting to resolve underlying
tissue restrictions. Following the second
incident, Michael took my hands and
placed them back on his head behind his
ears, indicating he wanted me to continue
working at that spot. Michael eagerly
participated in the sessions, lying down on
a treatment table for anywhere from 30-60
minutes, which was itself a huge change in
his tolerance and trust in his environment.
Michael’s grandmother and/or mother
attended every session. A few strategies
for a home program have also been
taught to them, and they performed
these techniques within the realm of their
own comfort level and understanding
of anatomy and physiology. Within four
months of weekly sessions, the frequency
of treatment sessions was reduced to
bimonthly sessions.
Summarizing additional
progress notes:
Michael continued to make progress
even after the frequency was reduced to
bimonthly craniosacral therapy sessions.
We have tested reducing the frequency.
He continues to demonstrate early signs of
increased stress if he goes longer than 3-4
weeks without a session.
Some additional changes that have been
observed over the course of the last three
years have included, but are not limited to:
1.There is currently no longer any
concern with elopement or running away
from group activities in any environment.
Michael remains attentive, calm, and
relaxed 90 percent of the time. There
are no longer any behavioral strategies
needed to control unsafe or aggressive
outbursts. Many people have commented
that they are no longer afraid of him. His
calm, alert, attentive state of readiness
has helped him benefit from his special
education programming and less staff time
is required to manage his behaviors.
2.Michael can now be dropped off at
the outside door of the school and walk by
himself to his classroom without getting
lost or demonstrating any problematic
behaviors. He has also become 50 percent
more independent in transitioning himself
between his middle school classrooms.
109
BIOMEDICAL
3.Without working on specific skills or
motor planning, Michael can now dress
himself independently, only requiring the
clothing laid out in proper orientation. He
can put on and close velcro shoes, though
his speed of performance is still somewhat
problematic.
4.Part of his nonverbal difficulties
included an inability to direct, execute,
and control tongue movements. Just this
summer he was able to stick out his tongue
and lick ice cream successfully off a cone.
5.Michael stays on task as often as
50 percent of the time and needs 90 percent
fewer verbal cues and physical prompts.
6.Last year, at the age of 14, Michael
was able to take a long car trip to the
West Coast without any meltdowns the
entire trip. He was able to stay overnight
in unfamiliar surroundings and even slept
through the nights. On the trip, instead of
being fearful and anxious with new people
and situations, he was consistently social
and tolerant of events. On a subsequent
family trip via air travel, Michael had not
one stress episode on the plane, acclimated
to the beach house, participated in
family activities, and actively engaged in
recreational activities with family members.
7.Formerly, Michael had a long history
of food aversions and a diet that severely
limited textures and tastes. In fact, specific
treatment to address oral sensitivities
previously did not produce significant
changes. He had to be coerced, prompted,
and encouraged to eat every meal.
However, indirectly during his process of
receiving CST, Michael began and is now
guiding himself toward food when he is
hungry as well as starting to communicate
his food preferences. Though he still eats
rather slowly, he eats large and full meals
and tries new foods – at least a trial bite –
willingly without stress. If he doesn’t like a
new taste, he will politely push it away.
8.Michael can now type single
phrases at home and in school using
facilitated communication, and he can do
so with several different people. He also
started tolerating working on two-hand
typing in school.
110
THE AUTISM FILE | www.autismfile.com 9.Michael is exhibiting a sense of trust
in people and settings.
10.Michael is also understanding
more and more commands and his follow
through with requests has increased –
not only with adults, but even with his
classmates’ requests.
11.Michael has not had a single bowel
movement accident for one-and-ahalf years. Though still needing some
assistance, he can now complete wiping
hygiene following a bowel movement 50
percent of the time. Previously, he was too
fearful to even attempt this task.
12. Michael no longer shows symptoms
of sound sensitivities. He no longer covers
his ears with his hands. He allows a good
deal of CST work around his ears and
temporal bones. In fact, he evens asks for it.
13.Last year Michael was in such a
reliable state of being calm and focused,
his family sent him to a bike riding training
camp (this was after years of trying to ride
a regular bike). Until then he was only able
to ride a large tricycle. Within one week, he
mastered riding a two wheeled bike with
no training wheels and he continues to do
so. Now he can take up to a six-mile bike
ride with his family, though he still cannot
motor plan the foot brake.
14.Michael demonstrates a [new]
remarkable ability to “go with the flow”
and not require rigid schedules, routines,
furniture arrangement, etc. Prior to the
onset of CST, Michael frequently and
predictably had major tantrums and fear
reactions entering new situations. By way
of example, many times the family had
to leave a store prior to even entering
because Michael got scared and freaked
out in the parking lot, often requiring
maximal physical restraint from a group of
adults. But just recently, his family had to
attend to an emergency medical situation
forcing them to leave Michael in the care
of a family friend with no preparation
time. These friends were just about to
go to a wedding and they said if Michael
could come to the wedding, they would
take him. Michael surprised everyone by
remaining calm, alert, interested, and
engaged through the entire ceremony,
even though it was an unfamiliar church,
unfamiliar people, and even in an
unfamiliar part of town. This same person
told the family she wouldn’t hesitate to
take Michael anywhere at any time. In fact,
just this summer, he went camping with
these same friends (without his primary
caregivers).
Summary:
Michael not only responded to initial
craniosacral therapy with some significant
progress in reducing sympathetic nervous
system behaviors (fight-or-flight, fear,
anxiety, aggression, terror), he continued
to gain spontaneous skill development
as prolonged treatment appeared related
to keeping his parasympathetic nervous
system prominent. Parasympathetic
manifestations include: calmness,
relaxation, readiness to learn, readiness to
be social, and learning from sensations.
The initial gains occurred fairly quickly
(five sessions), and newly-emerged
skills were demonstrated spontaneously
throughout the course of long-term CST.
Dr. Upledger’s theory is that injury and
other brain dysfunction blocks the system
from developing. If CST can remove
those barriers that block the organ from
functioning well, than development can
proceed on its own course.
One supposition about why we see these
kinds of positive changes following CST
treatment is that the lower brain centers
dominate when stress is chronic and this,
in turn, may deprive the higher brain
centers (executive functions). Of course,
there are many other theories of why these
changes occurred for Michael. The most
important thing to close with here is that:
v
His family’s quality of life greatly
improved because Michael improved;
vThe level and intensity of caregiver
and special ed staff requirements
were greatly reduced; and
vMichael started showing evidence
that he was enjoying his life and was
mastering skills.
None of this existed prior to the onset of
CST in his programming.
ISSUE 33 2009
QUESTIONS FROM THE AUTISM FILE READERS
Are there chiropractic issues, such as from the birthing process, that “set up” a predisposition to vaccine injury or
neurodevelopmental disorders?
Maybe, but birthing stress does not generally lead to an autism diagnosis. On the other hand, birth trauma to the head and neck can
predispose the central nervous system to executing less efficiency in dealing with stresses. Children with brain injuries at birth have
been misdiagnosed with ASD.
How does the neurological system impinge upon the immune system?
This is a complicated question to answer briefly, but it is understood that the nervous system helps to regulate the immune system
through an orchestra of hormones and other chemical substances. Immune stress can keep the nervous system in a state of stress and
vice versa.
How might CST impact gastrointestinal issues?
For one thing, when the nervous system is dominated by the sympathetic nervous system (behaviors of stress such as fight-or-flight,
anxiety, or agitation) the digestive system normally shuts down. That’s why it’s tough for us to eat a meal just before we have to
give a speech in front of an audience. The GI tract tends to work better when the parasympathetic system is running (when one is
relaxed and calm). Another issue we see is that with food intolerances, leaky gut, and other malabsorption issues, we suspect there is
internal pain. Chronic pain anywhere in the body will keep the nervous system in a state of stress. Plus, with malabsorption, we have
to consider how nutrients might be deprived from reaching targeted brain centers.
What kind of changes can we expect and how many CST sessions are needed?
Individual differences occur and each CST program should be tailored based on an individual’s unique responses. Typically, in this
author’s experience, some form of positive change is seen within 3-5 initial visits. However, there are some clients who have not
shown improvements after several CST sessions, regardless of cognitive skill level. There are some clients who seem to have an
active inflammatory process going on, so CST is a means of minimizing the effects of a chronic condition. Often, when the situation
is related more to a birth trauma or similar singular event, the responses are more immediate and lasting. Though it is impossible
to predict what changes will occur, better sleeping and eating as well as enhanced calmness and less fight-or-flight reactions are
commonly reported in the initial phase of treatment.
The author has been honored with the opportunity to continue CST long-term on several clients with ASD into the teen and adult
years. Some of the individual long-term changes that have been observed and documented when CST is the only consistent treatment
have included:
v onset of verbalizations
v increased initiative
vgreater level of engagement in social situations
v control of emotions
v improved motor skills
v improved articulation
vcomplete absence of fight-or-flight response
v improved social skills
v impulse control
vindependence in self-care and chores
Adolescents and those experiencing growth spurts often required more intensive treatment. Many clients progress to the point where
fewer sessions per year are needed.
The author recommends that a minimal trial of 6 sessions be attempted for a fair initial test. Not all CST practitioners are at the same
level of skill or may use CST in more of an orthopedic practice, rather than a neurological practice. Parents can find a CST practitioner
at the Upledger Institute Web site (www.upledger.com). The more trainings listed after a practitioner’s name, the more advanced their
skill level is expected to be. Always be sure to interview prospective CST practitioners for their knowledge and experience with autism.
Also, don’t be afraid to try more than one practitioner to compare skill levels. When performed properly, CST does not hurt the client. It
should appear to be as calm and relaxing as the client can tolerate; the session is led by the response of the client’s tissues.
References
1
Upledger JE. CranioSacral Therapy and the
Reversal of Pathogenic Processes Study Guide.
Upledger Institute Publishing: 2005.
Wanveer, T. Autism Spectrum Disorder: How
Craniosacral Therapy Can Help. 2007;7:1-4.
2
ISSUE 33 2009 3
Vargas, D, et al. Neuroglial Activation and
Neuroinflammation in the Brain of Patients
with Autism. Annals of Neurology. 2005;57:67-81
Suggested writings by Dr. Upledger:
CranioSacral Therapy: What It Is, How It Works
Your Inner Physician and You
Craniosacral Therapy
Working Wonders: Changing Lives with CranioSacral Therapy
111
By Stephanie Mauck
Robbie
Gets Relief!
R
obbie is 16 and a half years old and
going to be a junior in high school in
a few weeks. Overall, he is doing well
and we do feel blessed. But where has the
time gone? We got the autism diagnosis
right before the age of 4 through his school
district and the journey began. We didn’t
start doing the diet until he was 5 and a half
years old, and full biomedical intervention
did not start until 7 years old. It seems like
forever ago. We were considered cutting
edge back then – traveling to Florida to
see a Defeat Autism Now! doctor even
though we lived in Wisconsin. Robbie’s
situation is very complex, and we have used
many therapies and interventions over the
years – applied behavior analysis, speech
therapy, occupational therapy, craniosacral
therapy (CST), intravenous chelation,
hyperbaric oxygen therapy, intravenous
immunoglobulin, supplements, methyl-B12
shots, secretin, various diets, medications
for inflammation and gastrointestinal
issues, and more. My motto is to leave no
stone unturned. I have no idea if Robbie
will recover from autism or all of his medical
issues, but I want him to be as healthy and
as happy as he can so he can function to his
full potential.
Early on, when Robbie was 5 years old,
we met a wonderful occupational therapist
named Sue Kratz. Sensory integration was
her specialty. Robbie loved to go to Sue, so
it was part of our weekly schedule. About
five or six years ago, Sue began doing
craniosacral therapy after she was trained
at the Upledger Institute. Sue wanted to
try CST on Robbie. I was willing, but it took
a few sessions for Sue to get Robbie to lie
on the table. Each session, he would allow
her to work longer. Eventually, he loved
going to Sue to have her work on him. He
would also request Sue on days we were
112
THE AUTISM FILE | www.autismfile.com Stephanie Mauck lives in Waukesha, Wisconsin, with her husband, Tim, and her 2 children,
16-year-old Robbie and 10-year-old Julia (Robbie’s biggest cheerleader).
not scheduled because he wanted to feel
better. I haven’t stayed in the room while
he is getting CST as it is his time with Sue,
and Robbie tells me to leave. Robbie really
only started talking at 8 years old, and then
he was only saying single words for many
years after that. One day Sue was using
CST on Robbie when he was still using
single words, and after she had worked on a
certain part, he said, “Let’s go to Hardee’s
for a cheeseburger.” We were all thrilled
even though cheeseburgers and Hardee’s
are not on his diet. Robbie continues to
have conversations with Sue as she works
on him. He now tells her where he wants her
to work – whether it be his head or stomach
area. It is wonderful that he knows what
makes him feel better and can communicate
that to Sue.
In July, Robbie had his first (and we hope
last) grand mal seizure. It was one of the
scariest things that I have ever experienced
as a parent. Robbie had an appointment
with Sue four days after the seizure and I
was so glad. I felt like it would help Robbie
feel better. Robbie told Sue before she
started that his head felt “heavy.” After she
had been working on him, he told her his
head felt “light,” and he left the table in a
much better mood.
For me, craniosacral therapy is another
tool in our toolkit. I am glad we have used
CST as it is a therapy that brings Robbie
relief from inflammation and pain.
One day Sue was using CST on Robbie when he was still
using single words, and after she had worked on a certain
part, he said, “Let’s go to Hardee’s for a cheeseburger.”
ISSUE 33 2009
ADVOCACY
Update on
The Autism Research Institute
News You Can Use
By Stephen M. Edelson, PhD
Stephen M. Edelson, PhD, is director of The Autism Research Institute.
The Autism Research Institute (ARI) is the first organization dedicated to autism research. ARI supports and
conducts research; networks with parents, professionals and other autism organizations; and disseminates
information about autism through its publications, conferences, and Internet Web site. Defeat Autism Now!, a
program of ARI, facilitates and integrates state-of-the-art research on the biochemical treatment of autism.
T
he Autism Research Institute
(ARI) is dedicated to conducting,
sponsoring, and supporting
research efforts to find the underlying
causes of autism and to determine
which interventions are helpful. We
distribute this information through our
conferences, newsletters, and Web sites.
In August, ARI sponsored its second
two-day think tank of 2009. Some
fifty researchers and clinicians from
around the world discussed the state
of biomedical research and treatments.
Scientists presented their latest
research to practicing clinicians and
other scientists on the first day, and
on the second, clinicians met with
other clinicians and scientists to share
their experience in implementing
new treatment strategies. This gave
participants an opportunity to discuss
new ideas as well as creative ways to help
individuals on the autism spectrum.
ARI held its second biannual
ISSUE 33 2009 conference of 2009 in Dallas, Texas, in
early October. The conference included
a three-day parent session, a two-day
science session, a nutrition seminar, and
two two-day clinician seminars. ARI will
upload all of the presentations to its
website (www.autism.com) in November
or early December. There will not be a
charge to view the presentations online.
ARI recently launched an application
for Apple’s iPhone and iTouch. It’s free,
and it contains a paper titled “Advice
for Parents of Young Autistic Children,”
which was written by Drs. James Adams,
Bernard Rimland, Temple Grandin,
and me. We plan to upload a more
comprehensive application in the fall
that will include treatment summaries,
scientific citations, videos, and much
more.
ARI works closely with the brain and
tissue bank of the National Institute of
Child Health and Human Development
at the University of Maryland. This is
the only tissue bank dedicated to saving
whole-body tissue rather than just tissue
from the brain. In addition, this brain
and tissue bank will begin expanding its
program throughout the world. Please
visit our website to learn more about this
program (www.autism.com).
If you would like to receive monthly
updates on ARI’s projects and programs,
subscribe to our free e-newsletter on our
main Web site (www.autism.com).
And finally, this fall ARI will announce
its new integrative model which will
provide much more networking and
support to professionals in the autism
community as well as more efficient ways
to disseminate our information to those
affected with autism, family members,
and caregivers. I plan to provide a
detailed description of our new direction
in the next issue of The Autism File.
Information about the new model will
also be posted on ARI’s
Web site.
113
Yes! Bullying Can
Be Addressed
through the IEP
Julie Swanson (right) is in private
practice as a special education
advocate in Connecticut. Her practice
is almost exclusively dedicated to
helping parents of children with
autism spectrum disorders obtain
appropriate special education
services. Swanson’s website, www.
yourspecialchild.com, is dedicated
to the everyday needs of children
who have autism spectrum disorder.
Attorney Jennifer Laviano (left)
is in private practice in Connecticut.
Her representation of children with
special needs encompasses the full
spectrum of advocacy under the
Individuals with Disabilities Education
Act (IDEA), from attendance at
Individualized Education Program
(IEP) team meetings and mediation,
to zealous and experienced litigation
in due process hearings and federal
court. Laviano is a regular presenter,
both locally and nationally, on the
subject of the special legal rights
of children with disabilities and
their entitlement to receive a free
appropriate public education, and
authors the popular special education
blog www.SpecialEdJustice.com.
Swanson and Laviano co-host the
weekly radio show “Your Special
Education Rights with Jen and Julie”
on Autism One Radio.
114
THE AUTISM FILE | www.autismfile.com By Julie Swanson and Jennifer Laviano, Esq.
T
oday’s headlines are filled with news
about bullying in schools. The latest
phenomenon, called “bullicide,” happens
when kids who are being bullied commit
suicide. Let’s face it, bullying can be pretty
scary and should concern most any parent
who has a child attending school. But it is
especially worrisome for parents who have
children with disabilities because research
shows that children with disabilities are more
likely to be targeted. This is especially so
for kids with developmental disabilities like
autism because they are less likely to be able
to navigate their way around social situations
by the very nature of their disability.
As professionals who represent children
with special needs, we help parents obtain
appropriate special education services for
their children with disabilities. Both of us
have a particular interest in the rights of
children with autism spectrum disorder
(ASD). Julie is not only a special education
advocate whose practice is largely devoted
to this disability, she is also the parent of
a 14-year-old child with autism. Jennifer
has dedicated her law practice entirely
to the representation of children and
adolescents with disabilities whose families
are in disagreement with their public school
districts, and the majority of her client base
is comprised of families whose children have
ASD. Almost every family we work with that
has a child with ASD reports that its child has
been affected by bullying. Unfortunately, we
both work with parents who tell us that their
school team tells them that bullying can’t
be addressed through the special education
Individualized Education Program (IEP).
We are here to say it most certainly can!
Here are a few practical tips as you
tackle the problem:
1. Ask for your school district’s bullying
policy and procedures.
2. Screen your child at home. Talk to
him or her and explore what’s happening
at school and with peers. Set up a data
collection system at home that tracks any
changes in behavior.
3. Screen your child at school. Have a
team meeting with your child’s special
education team (e.g., the special ed
teacher, regular ed teacher, case manager,
social worker, guidance counselor, school
psychologist, speech pathologist, and
principal) and make them aware of the
situation. Ask the school team to monitor
ISSUE 33 2009
Therefore, when parents are
considering what rights their
child has if their child with
autism is being bullied, first
and foremost, they should ask
themselves whether changes
need to be made in the IEP.
Be prepared to hear your IEP
team grumble that bullying
is “not a special education
issue,” when indeed it is.
your child over a period of time and set
up a data collection system among the
team members to track any changes. Make
sure that monitoring takes place across
all structured and non-structured school
settings (e.g., the classroom, hallways,
lunchroom, bathroom, school bus, and at
recess).
4. Document the issue and request that
the documentation be placed in your
child’s educational file.
5. Determine if what is happening is a
reportable offense in accordance with
school policies.
6. Put a (written) plan in place with the
school team.
7. Recognize the difference between
a schoolwide approach to bullying and
a child-centered approach. Schoolwide
approaches include getting other kids
involved in resolving the bullying issue like
pairing the student with ASD with a peer
buddy. A child-centered approach involves
the child with ASD gaining a skill or
learning to change his or her own behavior,
like recognizing a bully or having a bank of
responses to say to a bully.
8. Consider what is making your child
vulnerable to being bullied. If you don’t
identify the specific problem your child is
having, then it is more difficult to address
it and help remedy it through the IEP. For
example, is it your child’s inability to read/
recognize social cues (e.g., shunning,
ISSUE 33 2009 teasing, gesturing, etc.), inability to
respond effectively (lack of a strategy
bank), or inability to self-advocate? Once
you’ve identified these types of issues, you
can argue that these social skill deficits
should be addressed as social skill goals
and objectives in the IEP.
9. Develop a plan targeting your child’s
level of ability. Set up a buddy system
in unstructured settings (schoolwide).
Develop incentives for other kids to
participate as buddies (schoolwide).
Develop classroom lessons to raise
awareness of bullying, that explain that
bullying will be taken seriously, and that
emphasize that there will be consequences
when students bully (schoolwide).
10. Develop IEP goals to address each
individual social skill deficit (studentcentered). Develop IEP goals to address
each individual pragmatic-language deficit
(student-centered.)
11. From a legal perspective, one of the
most difficult challenges in addressing
bullying in our public schools is that, while
many states do have laws on the books
regarding bullying, they generally do not
include what is called a “private right of
action.” In English, and summarizing a
very complicated legal premise, this means
that while the law exists, there is no right
to sue someone who violates it under that
specific statute. Therefore, parents whose
children are being routinely tormented
at school and who are faced with an
administration that elects not to properly
address the situation are left to utilize
other state or federal laws if they want to
find justice in our courts.
Therefore, when parents are considering
what rights their child has if their child
with autism is being bullied, first and
foremost, they should ask themselves
whether changes need to be made in the
IEP. Be prepared to hear your IEP team
grumble that bullying is “not a special
education issue,” when indeed it is. If a
student’s disabilities are causing them to
exhibit behaviors that are making them
particularly vulnerable to harassment
by their peers, or failing to understand
appropriate social interaction in the
“mainstream” (as is often the case with
ASD), then absolutely this needs to
be addressed in the student’s special
education program.
Without appropriate special education
support and instruction for students
with disabilities within our public school
settings, we are setting our kids with
autism up for being targeted, humiliated,
and excluded within the regular education
environment; this is in direct contravention
of one of the key purposes of the
Individuals with Disabilities Education
Act, which is to include children with
disabilities in the public schools. What
is happening as a result of our failure to
adequately scaffold special education
programs and instruction for students
whose ASD places them at even greater
risk for bullying is that we are returning to
the days of segregation of children with
disabilities, as a matter of fact, if not as a
matter of law.
115
BIOMEDICAL
Things Worth
Knowing When It
Comes to Food
By Lisa Lundy
Lisa Lundy is the mother of
three children and the author of
The Super Allergy Girl Allergy &
Celiac Cookbook - From A Mother
Who Knows. This cookbook
provides essential information
for a gluten-free, dairy-free,
egg-free, peanut-free, tree-nut
free, and other allergen-free diet.
Lisa’s third child, Anne, was a
modern-day “bubble child” three
years ago with a stark prognosis.
As a result of the interventions
that Lisa and her husband used,
Anne is doing remarkably well
and has avoided seizures, brain
damage, and other heartbreaking
outcomes that were predicted
and predictable. Lisa Lundy’s
passion is to empower others
with information so that they
can control, direct, restore, and
maintain their own health.
116
THE AUTISM FILE | www.autismfile.com A
s the author of a gluten-free, dairyfree, egg-free, peanut-free, and
tree nut-free cookbook, it is easy
to imagine that I talk and write about food
all the time. My three children, ages 7, 10,
and 12, have given me more experience
and challenges in the food area than
anyone would ever want. I did, for a brief
moment, think that I was going to lose my
mind while trying to figure out what foods
my second child, Noah, could eat without
an allergic reaction. There are many things
worth knowing when it comes to food and
being healthy including how food affects
health and human behavior, emotional
states, and cognition and learning; how
changes in your diet can help repair the
immune system; the distinction between
malnutrition and malabsorption; and how
rotation diets can be used to prevent the
development of new food allergies or
sensitivities and health issues.
The things that I learned from feeding
Noah would easily fill a book, and, to be
perfectly frank, comprise the information
that saved my daughter’s life. Noah
was diagnosed with acid reflux as a
newborn – probably only 2 weeks old.
The diagnosis from the pediatrician was
based solely on the fact that I asked why
Noah would cry after breastfeeding when
I ate certain foods and why he would
have a small amount of curdled spit up
shortly after I ate those meals (the ones
that caused Noah to cry). With just that
much information, I was told that Noah
absolutely had acid reflux, and I should
give him an over-the-counter antacid,
elevate his crib at one end, keep him
upright after feedings, and so on. The
antacid made no difference whatsoever.
The next solution was Zantac® syrup, which
also made no difference. Finally, the doctor
suggested a stronger prescription – a drug
called Propulsid®. One of my best friends
happens to be a registered pharmacist, so
I called her to ask about Propulsid®. Her
hesitation and silence were telling, and she
firmly advised me not to do anything until
she sent me information by express mail.
The manufacturer’s information that
my friend sent stated quite clearly that
Propulsid® (in 1999) was known to be
causing heart attacks in adults and that
there were no studies available on the use
of Propulsid® in children or infants. I took a
copy of the report into my pediatrician and
the look of shock on his face to this day is
memorable. He sunk his face down into the
report only briefly looking up to ask how I
managed to get the information.
I declined to accept a prescription,
instead opting for medical testing that
would evaluate Noah’s stomach-emptying
time and acid reflux. When the test results
came back, it was conclusive according to
the pediatrician. Noah’s stomach emptying
time was within the normal range and there
were zero signs of acid reflux. Propulsid®,
for the record, was later withdrawn by the
FDA for causing death in infants, children,
and adults. This was a pivotal moment
for me as a mother and as a consumer
of health care services. How was it that
I could get more accurate information
from a pharmacist friend than from my
pediatrician? This rocked my world. I
went about researching food allergies
ISSUE 33 2009
Before Noah was 1
year old, I realized
that I could radically
change his behavior and
his disposition just by
changing his diet.
as an alternative to the acid reflux. I will
never forget comparing the symptoms for
acid reflux and food allergies (non-IgE
mediated).
I realized by the time Noah was just 6
months old that he did not tolerate wheat,
oats, barley, or rye (the gluten family),
milk of any kind in any amount, tree nuts,
soy, eggs, and a few other minor foods.
Before Noah was 1 year old, I realized that
I could radically change his behavior and
his disposition just by changing his diet.
It was shocking to me. Just a little bit of
dairy or gluten and he went from a sweet,
loving, and docile 1–year-old, to a crying,
whining, upset basket case. It was surreal
to me since I had never heard of foods
being able to cause such dramatic changes
in emotional states or behavior.
Because I was not in the autism world or
any other community at the time, I actually
thought that I had invented the concept
that ADD and ADHD could be resolved
by diet. I hope that you are letting the
laughter rip about now. It was a member
of the local celiac support group that I
eventually became involved with who told
me about the Feingold® Association and
set me straight that moms had been using
diet for ADD, ADHD, and autism spectrum
disorders for decades. I can appreciate
and have compassion for anyone who is
skeptical. I would be skeptical myself had
I not seen with my own eyes the Dr. Jekyll
and Mr. Hyde behavior of my own child.
I can honestly say that I would have two
boys who would have ADD and ADHD if
they were not on a gluten-free, dairy-free,
and dye-free diet.
What there is available for anyone who
is interested is a wide body of scientific
knowledge and research about how food,
food additives, preservatives, and dyes
can affect not just children’s health, but
their ability to think, learn, behave, and
ISSUE 33 2009 Comparison of Acid Reflux or GERD and
Food Allergy/Sensitivity Symptoms
Symptoms of Acid Reflux or GERD
Heartburn: burning pain or
discomfort
Regurgitation: sour or bitter taste,
or a “wet burp,” or vomiting some
contents of the stomach
Stomach discomfort
Burping
Nausea after eating
Stomach fullness or bloating
Upper abdominal pain and discomfort
Fluid in the sinuses and middle ears
Inflamed adenoids
Chronic cough
Asthma
Hoarseness
Difficulty in swallowing (dysphagia)
function in life. You can find a wealth of
information on the Feingold® Association
Web site at www.Feingold.org. A parent
resource that I often recommend to read
more on this subject is a book called Is This
Your Child? by Doris Rapp, MD. Rapp is a
physician who is board certified in three
fields of medicine: allergy, pediatrics, and
environmental medicine. She has been a
physician for more than 50 years. You can
watch videos and download information
from her Web site at www.DrRapp.com.
In America, physicians routinely use
the ketogenic diet for children who fail
on the wide array of seizure medications
on the market. The ketogenic diet is
a highly controlled special diet where
the ratios of fats and carbohydrates are
measured and monitored. It is not an
easy diet by any means, but mainstream
medicine recognizes that this diet is
effective in many cases for controlling or
eliminating seizures in children who fail
on medications. Physicians have used diet
for more than 2,000 years to help improve
health and relieve unpleasant health
symptoms.
One of the most widely recognized
instances where diet can cause ill health,
Symptoms of Food Allergies or Food
Sensitivities (partial list only)
Heartburn: burning pain or discomfort
Regurgitation: sour or bitter taste, or a
“wet burp,” or vomiting some contents
of the stomach
Stomach discomfort
Burping
Nausea after eating
Stomach fullness or bloating
Upper abdominal pain and discomfort
Fluid in the sinuses and middle ears
Inflamed adenoids
Chronic cough
Constipation or diarrhea
Bad breath or chemical-smelling breath
Difficulty in swallowing (dysphagia)
I can honestly say that
I would have two boys
who would have ADD and
ADHD if they were not on
a gluten-free, dairy-free,
and dye-free diet.
117
BIOMEDICAL
Rotation diets are a tool that you can use to help the
body heal and to prevent new food allergies from
developing.
cancer, and even death is that of celiac
disease. Celiac disease is an autoimmune
disease in which eating gluten, an amino
acid sequence found in wheat, barley,
rye, some common oats, and other grains,
causes the villi in the small intestine to
become flattened, damaged, or destroyed.
The treatment for celiac disease is to
adhere to a strict gluten-free diet. Celiac
disease is very common in the United
States, affecting about 1 percent of the
population or nearly 3 million Americans.
The issue with celiac disease in our
country is that it is not being diagnosed.
Ninety-seven percent of the people who
have celiac in the United States do not
yet know that they have it, according to
the University of Chicago Celiac Disease
Program. Undiagnosed celiac disease can
cause a host of serious health issues, and
it carries with it more than 300 symptoms.
The more common symptoms include acid
reflux, abdominal pain or bloating, anemia,
anxiety, depression, arthritis, behavior
disorders, cancers, chronic constipation or
chronic diarrhea, chronic fatigue, headache,
migraine, infertility, insomnia, malnutrition,
irritable bowel, osteoporosis or osteopenia,
heart disease, and unexplained weight gain
or weight loss.
Testing for celiac disease is a simple
celiac panel blood test often followed by a
small bowel biopsy. An estimated 18 to 20
million are negatively affected by gluten,
yet do not actually have celiac disease.
Rather, they have what is known as gluten
intolerance. If you have experienced
ongoing health issues, it would be
advantageous to rule out celiac disease as
an underlying cause because undiagnosed
celiac disease increases the risk of cancer
by 200 to 300 percent.
Eating foods that are not agreeable with
your body can damage your body’s ability
to absorb vital vitamins and nutrients and
can lead to malnutrition and malabsorption.
You don’t have to have a distended belly or
be emaciated to have clinical malnutrition.
I have been dealing with malnutrition and
malabsorption issues with my daughter,
118
THE AUTISM FILE | www.autismfile.com Anne, for several years now. Malnutrition
simply indicates that you are lacking the
right amount of vitamins, minerals, and
other nutrients necessary for the body to
function. You simply cannot tell if someone
is malnourished or has malnutrition by
looking at them. You would have to do
blood testing to determine if someone has
malnutrition.
A malabsorption problem is defined
as defective or inadequate absorption
of nutrients from the intestinal tract.
Malabsorption is characterized by
deficiencies of carbohydrates, fats,
minerals, proteins, and vitamins and
sometimes by excess fat in the stool. If a
person is diagnosed with deficiencies in
vitamins, minerals, essential fatty acids,
or other essential nutrients, the typical
protocol is to add supplements to the
person’s diet to correct for the deficiencies.
Nutritional deficiencies are not corrected
overnight. It can take months or even
longer to correct some deficiencies. If a
person does not respond to nutritional
supplements in an appropriate amount of
time, then a diagnosis of malabsorption
would be fitting.
My daughter Anne was diagnosed with
malnutrition at age 2 after I finally caved
and spent the $700 for the nutritional
testing not covered by our HMO. The
results were unbelievable. Anne was
missing, across the board, most of the
nutrients her body required to function.
Had her nutritional levels been any
worse, I was told that she would be
having heart problems. I followed the
physician’s recommendations and gave
Anne supplements for one calendar year,
which included making two vitamin shakes
a day and giving her other supplements to
boot. We then repeated the testing only
to discover that Anne’s nutritional status
had not improved at all. This is the classic
case of malabsorption. We then began
intravenous nutrition therapy to bypass the
absorption problem, which we have been
doing once a week for three years. Still,
Anne’s nutritional levels are poor. Anne’s
overall health has improved dramatically
since the nutritional IV therapy started, yet
her blood testing leaves a lot to be desired.
We just had her blood sent to Europe
where much more sophisticated testing is
available as we look to solve the underlying
issues relative to the malabsorption.
Individuals with chronic health conditions
or issues would benefit greatly from
nutritional blood testing. If you are missing
critical nutrients, it is likely that you will
have a health problem eventually because
the body is designed to require certain
vitamins, minerals, and other nutritional
components.
Rotation diets are a tool that you can
use to help the body heal and to prevent
new food allergies from developing. Before
we had mass transportation in the United
States, everyone living here was on a form
of a rotation diet known as a seasonal
rotation diet. People ate the foods that
were available to them in the season they
were grown. They used root cellars for
storing the root plants, beets, potatoes,
squash, turnips, rutabagas, and carrots that
carried them through the winter months.
They ate fresh produce during the spring
and summer, canning some fruits and
vegetables for the winter. In those early
days, food would spoil before it could reach
a destination that was across the country.
Pioneers were not eating fresh strawberries
and watermelon during the winter in the
northeastern part of the country because
those foods were not grown locally.
A rotation diet is, simply put, a structure
for ensuring that you do not eat the same
foods every day. More often than not,
rotation diets are set up around a fourday schedule. Foods that are tolerated
are divided up by food families and then
scheduled into one of the four days. Noah
became allergic to rice after 18 months on
the gluten-free diet. I did not know at the
time that this was even possible. It was
an excruciatingly difficult time to have a
child who was gluten free, dairy free, egg
free, nut free, and not able to eat rice. He
developed the same symptoms from eating
any amount of rice that he had exhibited
from eating gluten. I had to remove rice
completely from his diet for more than
two years and go to work on boosting his
immune system.
We have used a rotation diet for
ISSUE 33 2009
approximately six years with great success
while on the gluten-free, dairy-free, eggfree and other allergen-free (and dye-,
preservative- and additive-free) diet. It has
prevented Anne from developing additional
food allergies to onion, garlic, cane sugar,
and other flavorings, and has kept Noah
able to tolerate rice once every four days.
Hippocrates, the Greek physician who is
considered to be the father of medicine,
hinted at a rotation diet when he wrote
that some people could eat a food every
fourth day, but if they ate it more often,
it would leave them feeling sick. While
a rotation diet has been successful in
reducing the development of additional
food sensitivities, one is cautioned not to
eat too much of any food on a given day as
this will negate the effect of the rotation
diet.
To set up a rotation diet, you will want
a list of foods by food family and by
food to make life easier. I have provided
these two lists as free downloadable
documents on my Web site: www.
TheSuperAllergyCookbook.com. On this
page please see the three-step process I
recommend people use to create their own
rotation diet, reprinted from my cookbook
with permission.
STEP 1:
Fill in the following chart as to the foods that you can tolerate safely. List all of the
foods that you can have individually. Look up the corresponding food family for each
individual food.
Foods that I can Tolerate
Food Family
We have used a rotation diet for approximately six
years with great success while on the gluten-free,
dairy-free, egg-free and other allergen-free (and dye-,
preservative- and additive-free) diet.
ISSUE 33 2009 STEP 2: Using the first chart that you
completed, take any foods that belong to
the same food family and mark those foods
with a symbol like a star, triangle, square, or
number (1s, 2s, 3s). For example spinach,
beets, amaranth, and quinoa are all from
the goosefoot or beet family, so these
would all go together. You could also use a
colored marker on the chart to group foods
into the same families. I personally find the
colored marker technique to be an easy way
to distinguish what foods go together.
STEP 3: The last step is to sort out the
foods that you can eat into different days.
I have provided the following chart (see
next page) to help you accomplish this
task. You should know up front that you
will probably have to do this more than one
time, and you may want to do it in pencil.
I suggest you make a copy of this chart
as this may change for you over time. I
have also provided you with a sample of a
complete four-day rotation diet using very
limited foods (see page 121). To complete
your own rotation diet, you will take your
first chart with the marked foods and put
all of the foods that go together on one
day. You will have some foods that are not
in the same food family as any other. You
can save them and use them to fill in as
needed.
You will also have several foods from
one family. For example, there are many,
many grasses or grains in the grass/grain
family. You can list them all on one day and
then divide them up using them on days
one and three or days two and four. Foods
from the same family are best separated
by a full day. It takes some time to do the
groundwork to set up a rotation diet. For
people who are already on restricted diets
or people who already have multiple food
119
BIOMEDICAL
Rotation Diet Chart
The Super Allergy Girl™ Allergy & Celiac Cookbook
DAY 1
DAY 2
DAY 3
DAY 4
Protein
Oil
Sweetener
Flours
Flours
Flours
Fruit
Fruit
Fruit
Vegetable
Vegetable
Vegetable
Vegetable
Spices
Spices
Milk Substitution
Flavorings
allergies or sensitivities, this is a proactive
strategy to prevent new issues from
developing. I do not believe or advocate
that everyone needs to be on a rotation
diet. I do advocate that people should not
eat the same foods every day – or a huge
amount of the same food, as this is known
medically as the sure path to developing
a life-threatening or IgE-mediated food
allergy.
There is a wealth of medical literature
on the power of food and special diets
to improve or resolve a wide variety of
health issues and symptoms. A great deal
of that information is available free for
the taking on different Web sites or from
library books that you can borrow. Food
is the fuel that runs the human body and
you can use food and nutrition to heal
damaged immune systems, malnutrition,
and, over time, even a more serious issue
like chronic malabsorption.
Four years ago, Anne was a modern-day
bubble child unable to go to the grocery
store without having asthma symptoms;
a child whose immune system was so
damaged that the common cold was life
threatening and required a prescription
The body has an incredible ability to heal given the
right food, the right nutrition, proper sleep, and the
right environment.
120
THE AUTISM FILE | www.autismfile.com steroid. Today, using food and nutrition
and natural medical technology, Anne is
a thriving, typical 7-year-old who can go
places (even the grocery store) without
having a physical reaction that requires
medication. The body has an incredible
ability to heal given the right food, the
right nutrition, proper sleep, and the right
environment.
Sample Four-Day
Rotation Diet
This is our four-day rotation diet (next
page). We do not use all of the foods listed
in any given day. These four days, however,
provide us with the guidance for which
foods to select from. While you will see soy
and corn listed on different days, we use as
little as possible of these two foods.
ISSUE 33 2009
Day 1:
Oil:
Olive (olive family)
Sweetener: Cane Sugar (grain family)
Flours:
Garfava Flour (legume family)
Tapioca Flour (spurge family)
Juice:
Apple (apple family)
Pear (apple family)
Milk Vance’s™ DariFree™
Substitution: (nightshade family)
Spices & Cinnamon (laurel family)
Flavorings:Paprika & Peppers
(nightshade or potato family)
Fruit:
Apples & Pears (apple family)
Vegetables: Green Beans (legume family)
Peas (legume family)
Peppers
Potatoes
Tomatoes
Protein:
Beef (bovid or bovine family)
Ice Cream:Potato Based (nightshade or
potato family)
Day 2:
Oil:
Safflower (composite family)
Sweetener: Honey
Flours:
Millet (grain family)
Rice (grain family)
Juice:
Grape (grape family)
Cranberry (heath family)
Blueberry (heath family)
Milk Rice (grain family)
Substitution:
Spices &Onion & Garlic (lily family)
Flavorings: Worcestershire Sauce
Fruits:
Grapes (grape family)
Cranberry (heath family)
Blueberry (heath family)
Vegetables:Carrots & Celery (parsley
family)
Protein:
Ice Cream:
Cabbage (mustard family)
Turkey (turkey family)
Rice (grain family)
Day 3:
Oil:
Sesame oil (sesame family)
Sweetener:Beet Sugar
(goosefoot or beet family)
Flours:Amaranth Flour
Quinoa Flour
Tapioca (spurge family)
Juice:
Peach (plum family)
Pineapple (pineapple family)
Milk Soy (legume family)
Substitution:
Spices & Chocolate (chocolate family)
Flavorings: Peppermint (mint family)
Fruits:
Peaches (plum family)
Watermelon
(melon or gourd family)
Pineapple (pineapple family)
Vegetables: Spinach (goosefoot or beet
family)
Beets (goosefoot or beet family)
Pumpkin (melon or gourd
family)
Squash (melon or gourd family)
Protein:
Chicken (pheasant family)
Ice Cream: Soy (legume family)
Other:
Sesame Seeds (sesame family)
Other:
Tahini (sesame family)
Quinoa Pilaf & Cereal
Day 4:
Oil:
Sunflower (composite family)
Sweetener: Maple Syrup (maple family)
Flours:
Corn (grain family)
Sorghum (grain family)
Flaxseed (flax family)
Juice:
Orange (citrus or rue family)
Lemon (citrus or rue family)
Strawberry (berry family)
Raspberry (berry family)
Milk Sunflower Milk
Substitution: (composite family)
Spices & Onion & Garlic (lily family)
Flavorings:Lemon & Orange (citrus or rue
family)
Raspberry & Strawberry (berry
family)
Fruits:
Banana (banana family)
Orange (citrus or rue family)
Strawberry (berry family)
Raspberry (berry family)
Vegetables:Sweet Potatoes
(morning glory family)
Cauliflower (mustard Family)
Broccoli (mustard Family)
Cabbage (mustard Family)
Protein:
Pork (swine family)
Ice Cream:Orange Sorbet; Sunflower
Milk Ice Cream
Other:
Flax Oil
Sunflower Seeds (composite
family)
Sunbutter™ (composite family)
Flax Seeds (flax family)
Partial List of Symptoms for Food Sensitivities or Intolerances
Note: These symptoms are also symptoms for many other health conditions.
See your health practitioner to rule out other medical conditions.
In infants: prolonged colic; excessive spitting; repeated vomiting; diarrhea and/or constipation; congestion of the
nose or chest; eczema or itchy rashes; restlessness; screaming or prolonged crying; dislike of cuddling; need to be
walked or bounced; excessive drooling; extreme perspiration; excessive crib rocking; head banging; walking by 7 to
10 months; repeated ear infections; genital touching; reluctance to stay dressed; rapid pulse; demand for constant
attention; acid reflux; and more.
In children: watery, red, or itchy eyes; dark circles under the eyes; wheezing or coughing; repeated or constant
infections; aggression; anger; unhappy disposition; dry skin; hives; red earlobes; red cheeks; nausea; belching; rectal
gas; bloating; bad breath; diarrhea; constipation; itchy rectum; sleeping problems; bladder issues (bed wetting,
incontinence, and frequency of urination); leg or muscle cramps; moodiness; headaches; stuffiness; fatigue; lack of
alertness; mottled tongue; eye wrinkles; allergic nose rub; learning issues; hyperactivity; asthma.
121
ADVOCACY
What Will the National
Swine Flu Policy
Look Like?
By Vicky Debold, PhD, RN
Vicky Debold,
PhD, RN, is
a consumer
representative
to the Food
and Drug
Administration’s
Vaccine and
Related Biological
Products
Advisory Committee and the National
Vaccine Advisory Committee Vaccine
Safety Working Group. She is the
director of patient safety and a board
member of the National Vaccine
Information Center and a board
member of SafeMinds.
A
s this issue goes to print, many
critical decisions about how the
impending swine flu pandemic will
be handled in the United States have not
been made. Outstanding major decisions
include final formulation of the vaccine,
how many doses will be needed to stimulate
sufficient antibody responses, and how the
vaccine will be distributed and administered.
Government officials have said that citizens
will be able to make their own voluntary
decisions about whether to take the vaccine.
It’s not clear, however, whether all states
and employers will allow all citizens and
employees to make a voluntary decision and
whether there will be sufficient information
with which to make an informed choice.
Even though many critical decisions have
yet to be made, citizens can decide not to
panic and to begin educating themselves
about the issues in order to make informed
122
THE AUTISM FILE | www.autismfile.com decisions. It’s worth noting that the World
Health Organization modified the definition
of “pandemic” and it no longer necessarily
implies a certain level of virulence or
mortality. As of the time of this writing, the
swine flu virus has been stable and shows no
signs of mutating to a more virulent form,
according to the Centers for Disease Control
and Prevention. In fact, some experts have
argued that it is more likely that the virus
will become less, rather than more, virulent.
Meanwhile, the government has spent
millions to preorder the vaccine from five
currently licensed seasonal flu vaccine
manufacturers, all of which have recently
begun clinical trials on their products. Two
basic vaccine types are being considered:
a live (attenuated) virus vaccine to be
administered as a nasal spray and a killed
virus vaccine administered as an injection
(some of these doses will contain thimerosal
and some may contain an unlicensed
squalene-based adjuvant).
It is expected that thimerosal (an organic
compound that contains 49 percent
mercury) will be used in the same doses
that are currently contained in seasonal flu
vaccine. As a result, exposures as high as 75
micrograms over a 21-day period could be
commonplace if two doses of the swine flu
vaccine are needed and it is given with the
seasonal flu vaccine. This exceeds the EPA
safe exposure guideline of 0.1 mcg/2.2 lbs/
day.1 Each injection is likely to contain 25
micrograms of mercury, which would require
an individual to weigh at least 550 pounds
to be within the safe exposure limit. Despite
reassurances that “ample” quantities of
mercury-free vaccine will be available, it
is unlikely that CDC will state a preference
for thimerosal-free vaccine for certain
groups even though pregnant women and
infants are on the top of the list of groups
recommended to get the vaccine.
One of the most controversial aspects
of the U.S. swine flu program is whether
squalene-based adjuvants will be used.
Political pressure is already mounting for
Americans to choose to use these adjuvants
because they are “dose-sparing,” meaning
that many more doses of vaccine can be
produced. Although the specific criteria that
will be used to make the decision have not
been made public, the decision is likely to
tip in favor of using adjuvants if increased
virulence and death rates are observed and/
or manufacturers continue to have difficulty
growing sufficient quantities of the virus to
meet the world demand for vaccines. The
As of the time of this writing, the swine flu virus has been
stable and shows no signs of mutating to a more virulent form,
according to the Centers for Disease Control and Prevention.
In fact, some experts have argued that it is more likely that the
virus will become less, rather than more, virulent.
ISSUE 33 2009
decision to use these adjuvants will be made
by a Food and Drug Administration (FDA)
commissioner and will be possible through
an Emergency Use Authorization (FDA
mechanism).
If this occurs, it will be the first time in
our nation’s history that pregnant women,
infants, and children will be expected to use
an experimental vaccine with so little clinical
trial data on efficacy or safety. The primary
concern about safety involves evidence
suggesting that there is a relationship
between injection of squalene-based
products and development of autoimmune
conditions. The clinical trials started in
early August and by the time the vaccine
is available for use in late September,
there will have been too little time for the
symptoms of some of the serious adverse
reactions to appear.
References
Safe Exposure Standard as reported in Executive
Summary of the 2003 Congressional Report
Mercury in Medicine – Taking Unnecessary
Risks: “The Institute of Medicine, in 2000,
evaluated the EPA’s methylmercury standard and
determined that based upon scientific data that
it, rather than the FDA’s, was the scientifically
validated safe exposure standard.”
1
For more information about swine flu, please visit the swine flu Web pages at SafeMinds
(safeminds.org) and the National Vaccine Information Center (NVIC.org).
Will NIEHS Aggressively Push
IACC’s Research Agenda?
By Theresa Wrangham
Theresa
Wrangham is
the president
of SafeMinds,
a non-profit
organization
founded to
investigate and
raise awareness
of the risks to
infants and children of exposure
to mercury from the environment
and medical products, including
Thimerosal in vaccines. Theresa lives
in Colorado.
A
s the Department of Health and
Human Services’ Interagency
Autism Coordinating Committee
(IACC) updates its strategic plan for
autism research, whether the National
Institute of Environmental Health Sciences
(NIEHS) will be more active in asking for
objectives investigating the role of the
environment in autism is plaguing the
minds of many in our community.
The body of research pointing to
environmental factors being responsible
for the increase in autism rates continues
to grow right along with autism rates,
which have increased from 1 in 150 to 1
ISSUE 33 2009 in 100.2 Autism is a substantial issue for
individuals, families, and the economy
because for many it poses lifelong
challenges requiring lifelong services. For
example, there is currently a massive influx
of young adults reaching an unprepared
developmental disabilities service system.
For the sake of individuals’ health and the
health of families and society, emphasis
must be placed on prevention and, in the
case of those already diagnosed, effective
and efficient treatments that address the
root physiological causes of autism. Both
of these objectives will be achieved with
research into environmental factors.
Until that time, our construct is the
IACC and reliance upon federal agencies
that comprise IACC membership and
their ability to appropriately prioritize the
research agenda. IACC-sponsored science
workshops were held in September, but
as of August, environmental expertise
was notably minimal for these workshops.
Tellingly, the initial composition of
these workshops called for one federal
and one public IACC member from the
IACC’s strategic planning subcommittee,
and Lyn Redwood, who is on said
subcommittee, was not placed on any
of the five workshop panel positions.
Instead, public members not on the
subcommittee have been assigned,
The body of research
pointing to environmental
factors being responsible
for the increase in autism
rates continues to grow right
along with autism rates,
which have increased from
1 in 150 to 1 in 100.
123
ADVOCACY
leaving Ms. Redwood as the only public
IACC member and subcommittee member
not assigned to a workshop panel. Ms.
Redwood has historically been a leading
voice on the IACC with regard to the
need for environmental research, and,
therefore, these actions demonstrate once
again the lack of balance on the IACC,
specifically, that federal representation
(12) outnumbers public representation
(6), which further continues to act as a
blockade in integrating environmental
research objectives into the strategic
plan. The likely outcome is an updated
(yet relatively antiquated) research
agenda lacking cutting edge objectives in
environmental research to stem the tide of
autism’s growth.
NIEHS has a seat on the IACC and
under its new director, Linda Birnbaum,
PhD, DABT, ATS, could stimulate and
provide a new direction on risk factor
research indicated in autism. Given NIEHS’
recognition of the value of biomedical
research3, its leadership is needed to
harness data gathered by the National
Center for Environmental Health that
has been investigating and monitoring
environmental chemicals as a means to
determine their effects on human health.
Data gathered via participants from the
National Health and Nutrition Examination
Survey that has continuously measured
random samples of environmental
chemicals and their metabolites in women,
children, and adults is also low-hanging
fruit in need of investigation. These
actions would facilitate the establishment
of reference ranges for use by physicians
The likely outcome is an updated (yet relatively antiquated)
research agenda lacking cutting edge objectives in
environmental research to stem the tide of autism’s growth.
and scientists to determine unusually
high exposure levels to a toxicant within
individuals and/or groups, identify the
proportion of the population with toxicity
levels above those with known adverse
health outcomes, tracking time trends in
exposures to determine what changed in
the environment and ultimately setting
priorities for research on the health
effects of exposure to environmental
chemicals.
A research objective that should be
added to the autism research agenda
and/or pursued by NIEHS is body burden
studies on children with an autism
spectrum disorder that would include
investigation of:
the toxic load of toxicants like
mercury and aluminum
their toxic synergistic effects
when combined (in addition to
when alone)
their toxic synergistic effects
when in the presence of other
toxicants, viruses, and bacterial
infections
Existing objectives within the strategic
plan that investigate biomarkers and
treatments should be substantially
increased and focus on the identification
of comorbid disease states (immune
system abnormalities, inflammatory bowel
disease, oxidative stress, etc.) that parents
and clinicians alike have reported, and that
when treated yield a marked improvement
in learning and behavior in children on the
spectrum.
Lastly, the IACC must restore vaccine
objectives that were removed from
the strategic plan, as instigated by its
chairman Dr. Thomas Insel, yet which are
now recommended in the National Vaccine
Advisory Committee’s review of the
CDC’s Immunization Safety Office Draft
Research Agenda, as well as integrating
other autism specific outcomes identified
in that review. Especially in view of Insel’s
public acknowledgement in January of
the inherent conflicts of interest that
remain within the Department of Health
and Human Services (albeit said to thwart
further vaccine objectives), vaccine
research undertaken by the IACC must
be conducted under an independent
panel free from the influence of vaccine
manufacturers.
The updated research agenda is likely to
be passed shortly after the publication of
this article, and updated information on
improvements in the agenda and action
that the public can take will be posted at
safeminds.org.
References
National Children’s Health Survey http://nschdata.org/
DataQuery/DataQueryResults.aspx
2
”Human health and human disease result from three
interactive elements: environmental factors, individual
susceptibility and age. The mission of the National Institute
of Environmental Health Sciences (NIEHS) is to reduce the
burden of human illness and dysfunction from environmental
causes by understanding each of these elements and how
they interrelate. The NIEHS achieves its mission through
multidisciplinary biomedical research programs, prevention
and intervention efforts, and communication strategies that
encompass training, education, technology transfer, and
community outreach.” url – http://www.niehs.nih.gov/
research/supported/programs/sbir/
3
124
Bringing Social
Skills Training into
the Digital Age
By John M. Guercio, PhD, BCBA-D, CBIST
Background
The bright screen beckons as Jerry fixes
his gaze exclusively on the television.
The multitude of brilliant colors and the
crackle of the leaves that the characters
step on contribute to the symphony
that enraptures him. Oblivious to what
is going on around him, Jerry provides
all of the stimulation that he needs as
he is transported to his own experience.
While many of us get lost in the movies or
our favorite television show, rarely is the
attraction as great as it is for individuals
who are on the autism spectrum. Part of
what defines a great theatrical event or a
memorable film is how it can literally take
you away from your present experiences
and transport you to the time and setting
of the events unfolding on the screen.
What if that experience occurred with
every movie that you watched or every
video game that you played? Individuals
with autism spectrum disorders (ASD)
can relate to this. ASD is a neurological
disorder that impacts the ability of a
person to communicate effectively and to
perceive their world in the same manner
as those who are not on the spectrum.
At first blush, this may seem to be quite
a shame and a condition that would be
formidable to overcome. However, some
recent developments in the treatment
of individuals with ASD are proving that
improvements are certainly possible.
The strengths-based approach seeks to ferret out how we can parlay
areas of exceptional skill in the ASD population into increased
opportunities for autonomy, employment, and social functioning.
ISSUE 33 2009 John M. Guercio, PhD, BCBA-D,
CBIST, is the vice president of
clinical services and research at
the Judevine Center for Autism.
He received his degrees from the
Behavior Analysis and Therapy
Program at Southern Illinois
University in Carbondale. Dr.
Guercio was previously employed
as the program director for the
Personal Intervention Program
at the Center for Comprehensive
Services, where he worked with
individuals who display high-risk
aggressive behaviors from 1992
to 2007. He has a comprehensive
background of experience in
staff training, functional analysis
of problem behavior, functional
communication training,
awareness training, relaxation
training, and biofeedback for a
number of physical and emotional
problems ranging from chronic
pain to phobias. Dr. Guercio has
published a number of articles
related to awareness training,
biofeedback applications, and
weight management protocols with
those with acquired brain injuries
as well as a book chapter titled
“Behavioral Challenge Following
Traumatic Brain Injury: Etiology,
Assessment, and Behavioral
Treatment Options” in Innovations
in Head Injury Rehabilitation. Please visit www.judevine.org.
125
Strengths-based approach
Operating from a strengths-based
perspective1, researchers in St. Louis,
Missouri, are starting to turn the tables
on conventional lines of thinking. While
much of the research community focuses
its efforts on the causes of ASDs, which is
a very valid approach, many parents want
answers now as to what strategies they
can use to help their children with daily
living. Concerning the obstacles faced by
individuals with autism and, consequently,
those who support them, a practical
solutions-based approach includes finding
data-based interventions for some of
the issues inherent to the disorder. The
strengths-based approach seeks to ferret
out how we can parlay areas of exceptional
skill in the ASD population into increased
opportunities for autonomy, employment,
and social functioning. In contrast to
ASD’s signature social communication and
educational challenges comes a sterling
set of skills in other areas. Although
all individuals on the spectrum do not
display them, a vast number of people
with an ASD possess exceptional spatial
skills. These skills involve, for example,
the uncanny ability to remember routes
to destinations and to compete on
extremely high levels nationally on video
games. As early as 1995, researchers
were documenting the preference that
individuals on the spectrum have for
video-based cues (Quill, 1995). Temple
Grandin frequently speaks about the
ability of persons on the spectrum to see
the world in terms of its visual spatial
dimensions (Grandin, 1995). The field of
education has capitalized on these visual
spatial strengths by introducing teaching
methods that incorporate visual media
(Frith & Happe, 1994). The data clearly
show that the acquisition of academic
material is far superior when presenting
it via video as opposed to traditional
teaching methods when applied to the
ASD population (Moore & Calvert, 2000).
Visual activity schedules have been used
with adults to teach functional leisure time
1
A strengths-based perspective minimizes
weaknesses and maximizes strengths of the
individual. By focusing on strengths as opposed
to weaknesses, we can foster increased
autonomy.
126
THE AUTISM FILE | www.autismfile.com An innovative approach is to
build upon the spatial skills seen
in autism to help compensate for
some of the struggles.
skills (Soldner, Rehfeldt, Guercio & Dillon
2005). A great deal of the work being
done to teach social skills to individuals
with autism incorporates video modeling
and feedback into the process. An
especially intriguing article published in
2004 compared two groups of individuals
on their spatial abilities (Caron, C, M.J.,
Mottron, L., Rainville, C., & Chouinard,
S., 2004). One group was comprised of
individuals on the autism spectrum and
the other group was comprised of typically
developing individuals. Both groups were
in the 11-37 age range. The researchers
required the groups to navigate a lifesized labyrinth. The participants were
also asked to draw a map of the labyrinth
once they had experienced it. The ASD
group performed as well as the typically
developing group with the exception of a
few of the tasks. The recall of paths and
the mapping of the labyrinth were skills
that the ASD group was superior on. An
invigorating approach is to build upon
these documented spatial skills seen in
autism to help compensate for some of the
struggles inherent in the disorder.
Applied behavior analysis (ABA)
has been one of the most effective
interventions for ASDs. The efficacy of the
approach is widely recognized. Some of
the pioneers in the use of ABA strategies
to treat individuals with autism did their
work at the UCLA Young Autism Project
under the guidance of Ivar Lovaas (Lovaas,
1987, McEachin, Smith, & Lovaas, 1993).
Their outcomes showed that after 2-3
years of ABA therapy, 47 percent of those
treated were able to perform at the level
of same age peers who were not on the
spectrum. Intensive behavioral treatment
was the key ingredient in these findings.
Similar studies have been performed in
the twenty years since these findings were
published. They have all achieved the same
outcomes that Lovaas and his group saw in
the 1960s and 1970s (Sallows & Graupner,
2005). By combining ABA methodology
to measure treatment gains and computer
technology to act as the intervention, new
horizons are being explored with respect
to social skills training. An innovative
approach is to build upon the spatial skills
seen in autism to help compensate for
some of the struggles.
While spontaneous conversation
skills and social interaction are major
challenges for individuals with ASD, a new
approach to social skills instruction uses
computer software. An example of this
is SketchUp, which can be downloaded
for free from the Internet. The program
is used by architects to design buildings
and determine how a house may look
before the first brick or board is placed in
the frame. The software places separate
rooms of the structure in a 3-D format
that allows the architect to investigate
a number of scenarios for how the
house will ultimately look. The software
also has the capability of adjusting for
environmental needs. In using this tool
with ASD students, researchers are hoping
that students with an ASD will tell them
what is most comfortable in employment,
social, and other settings, such as the
best placement of lights and windows.
A number of environmental elements
ranging from the brightness of the lights
in a facility to the various odors that the
chemicals in the building materials exude
could have a profound impact on the
functioning level of the virtual individuals
inside the building. As many readers may
already know, due to sensory processing
challenges, these types of distractions are
experienced exponentially within the ASD
population.
In addition to some of the physiological,
ISSUE 33 2009
medical, and social challenges mentioned
so far, one of the most basic facts about
persons on the spectrum is the way that
they perceive the world. Many times their
senses can “play tricks” on them. Common
experiences such as train whistles,
fluorescent lights, the materials in new
clothing items, and the wafting smells of
food can be amplified. Shifting cars, tea
kettles whistling on the stove, and beams
of sunlight through an uncovered window
can be strong distracters that focus the
individual’s attention to eliminating
the source of the distraction instead of
engaging in the task at hand. By using
specially targeted curriculum guides for
use in classroom settings to teach the
computer software skills, social skills
deficits are being addressed through the
use of computerized tasks. The advantage
of the software is twofold:
1. With input from individuals on the
spectrum, we can develop models that
reduce environmental distractions in
employment, social, and most other
settings.
2. Due to the level of engagement
of the student with the software, the
student’s environmentally-induced
distraction level in the classroom
setting is reduced; consequently, the
student can participate more fully in
the social skills therapy as described
below.
challenging each other through healthy
“competition.” The usual social challenges
vanished with this tool operating as, in
essence, an intermediary.
This type of activity fosters skills for
employment. Each step along the way,
instructors praised students for working
together in teams.
Though the uses of the software are
diverse, the study described below is the
first data set related to using the program
to teach some of the skills that individuals
on the spectrum struggle with.
The study
The approach involved holding an eightweek computer class for persons with
autism. The curriculum took the students
through a series of social interaction
exercises that were used to determine
some of the specific challenges that each
of the students experienced. Common
social questions were given to the set of
eight students, and they were required
to obtain information from their peers in
a group setting. Questions such as “how
many siblings do you have?” “where are
you from?” and “what is your favorite
leisure activity?” were given to each
student to use as a reference in getting to
know their peers in the classroom better.
Once this assessment was completed, the
class was divided up into groups of two
students each. Instruction on the basics of
the computer software and the capabilities
of the program were then unveiled to the
group over the course of the eight-week
curriculum. Individual instructors moved
through the classroom providing verbal
and gestural modeling for the students
as to how to use the SketchUp software.
Questions were answered as they arose,
and each student was allowed to master
the current step that was being worked
on before the class moved on to the next
step in the sequence.
Murmurs such as “wow,” and “this is
way too cool,” were frequently heard
as the students began their exploration
of the software. The spatial capabilities
of the software were evident from the
moment that each of the students took
their seats in the computer lab. Typical
assignments ranged from building a fence
to go in front of their home to designating
a garage to go behind it. All of the tasks
were designed to encourage partnership
by the members of each group. A garage
designed by one member of each dyad
was ultimately combined with the fence
designed by the other member. As the
software skills were being acquired by
the students and they participated in
the tasks given to them, some very
enlightening observations were made
that opened the door more fully to the
potential of SketchUp applications in the
ASD community.
Using the software for
social skills therapy
Again, by using specially targeted
curriculum guides for use in classroom
settings to teach computer software skills,
social skills deficits are being addressed in
a positive fashion. These classrooms are
investigating the concomitant impact on the
social functioning of the individuals with
autism as they learn and use the software.
Using the 3-D architectural computer
software, students were redirected to a
common reference point and engaged in
joint attention tasks, working side-byside on the common goal of designing
a building, while having their own
subset projects within the building and
127
Social Skills Scores
80
70
60
50
40
30
20
10
0
Baseline
SketchUp
Study Phases
As the students constructed their
weekly projects, a great deal of
participatory behavior and teamwork
was required to meet the educational
objectives of the program. Instructors
discovered that they were able to teach
the programming skills in a format that
was very appropriate to the learning
style of many autistic persons. A handson approach with plenty of visual
modeling from the instructors and the
provision of step-by-step sequences of
operation facilitated a productive learning
experience for all.
Slowly but surely, stereotypy
disappeared, blank stares turned to
focused attention, and body rocking
was replaced by attentiveness to the
computer screen. What we were seeing
was a functional replacement activity
in the form of a computer screen and a
mouse. Through the provision of verbal
praise for completed assignments and the
partnering behavior that was built into
each task, social skills improved. Another
plausible behavioral explanation for the
outcomes was that the computer screen
also became a discriminative stimulus
(Sd) for appropriate responding. The
computer screen redirected the students’
eye gaze away from each other thus
facilitating increases in conversation
and teamwork. The computer activities
seemed to serve as a salient distracter
from the social situations that usually
produced increased stress for these
students. Social interactions seemed
128
THE AUTISM FILE | www.autismfile.com to be less aversive when nested within
the context of a common goal with
a predictable sequence of events to
follow. The transformation occurred on a
weekly basis. Students entered the room
engaging in their own individualized
stereotypy and reserved demeanors only
to blossom into hard workers with the
singular goal of developing the best
design that they could for the class. Our
exploratory journey carried us further as
we observed the changes that took place
during every class. The significant changes
that we were observing were recorded in
a rigorous manner. Taking great care to
ascertain whether the changes that we
were seeing were due to the software
alone and not alternative explanations
that we may have been overlooking, we
proceeded. Eye contact, the degree to
which stereotypical movements interfered
with interactions and the impact of
other socially-challenging behaviors
were observed for each pair of students
in the classroom. Each of the pairs of
students that we observed seemed to get
better with respect to their social skills
as they were working on the software.
The bar graph above shows some of the
improvements in social skills that we saw
over the course of the SketchUp class.
In order to ensure that what was being
observed was the result of working with
the computer program, a reversal design
was implemented whereby we returned
to the baseline phase of the project
during week 4. We took the computers
away and had the students interact with
a set of questions that they were to pose
to one another. Just as we observed
during the initial baseline phase, the
students returned to all of their socially
inappropriate behaviors. Once the
computerized tasks were reintroduced,
we saw the same behavioral change
that we had seen before. Though this
was just our initial investigation, we are
encouraged to keep looking at what these
types of software programs can offer
therapeutically to individuals of all ages
who are on the autism spectrum. From
social skills to supported employment,
to behavior therapy, the horizon is vast
and we feel that there is much more to be
learned.
References
Caron, C, M.J., Mottron, L., Rainville, C., &
Chouinard, S. (2004). Do high functioning
persons with autism present superior spatial
abilities? Neuropsychologia, 42, 467-481.
Frith, U., & Happe, F. (1994). Autism: Beyond
Theory of Mind, Cognition, 50, 115-132.
Grandin, T. (1995). Thinking in pictures. New
York: Vintage Books.
Lovaas, O.I. (1987). Behavioral treatment and
normal educational and intellectual functioning
in young autistic children. Journal of Clinical
and Consulting Psychology, 55, 3-9.
McEachin, J.J., Smith, T., & Lovaas, O.I.
(1993). Long-term outcome for children with
autism who received early intensive behavioral
treatment. American Journal on Mental
Retardation, 97, 359-372.
Moore, M & Calvert, S. (2000).Brief report:
Vocabulary acquisition for children with autism:
Teacher or computer instruction. Journal of
Autism and Developmental Disorders, 30(4),
359-362.
Sallows, G.O, and Graupner, T. D. (2005).
Intensive Behavioral Treatment for Children
With Autism: Four-Year Outcome and
Predictors. American Journal on Mental
Retardation, 110, 417-438.
Soldner, J.M., Rehfeldt, R.A., Guercio, J.M.,
& Dillen, J. (2005). The Use of Computer
Activity Schedules to Increase Initiation of and
Engagement in Domestic and Leisure Activities
in an Adult with Acquired Brain Injury. European
Journal of Behavior Analysis, 6, 173-177.
Quill, K.A. (1995). Teaching children with
autism: Strategies to enhance communication
and socialization. New York: Delmar
Publishers Inc.
ISSUE 33 2009
Please email your questions to:
Askthedoctor@autismfile.com
Harry Schneider, MD, PhD
Martha Herbert, MD, PhD
Question 1
I believe there are environmental
triggers to autism, but a doctor
mentioned to me that research
has found one can distinguish
children who will later develop
autism from the way they play
at 6 months of age. He also said
there were lesions on the brains
of children with autism. Do you
know of whatever studies were
behind what this doctor said?
Does this mean that autism is
predetermined before birth?
Does this exclude postnatal
environmental triggers in either
or both cases? This is what I
would wonder: Did the children
play inappropriately at 6 months
old following a Thimerosalcontaining hepatitis B shot on
the day of birth followed by 2
more sets of shots at well-baby
visits? Did the lesions come as
a result of toxic insult, or were
they there sans toxic insult and
preceded autistic traits? Were
they the result of a chronic
neuroinflammatory or other
pathological process that was
downstream of something else?
It’s all well and good to say that
there is pathology, but WHY is
there pathology? I think that we
need to go back to first causes.
I think that it’s important to
know so that we just don’t use
educational/behavioral therapies
to the exclusion of biomedical
therapies as appropriate.
Response from
Martha Herbert, MD, PhD:
First, predictions of outcome based on
play behavior at 6 months are turning
out not to be that accurate—really not
much better than random; predictive
power is much better at 12-14 months.
Second, the statement that “there were
lesions on the brains of children with
autism” grossly oversimplifies a hugely
complicated and often contradictory body
of literature on the brain in autism. In
particular, most people with autism don’t
have major “lesions on the brain.” Socalled “minor” lesions are pretty common,
such as white matter hyperintensities;
these are considered “non-specific”
by most doctors, but some of them
may conceivably relate to underlying
pathophysiology such as hypoperfusion or
mitochondrial dysfunction, although it is
not usually possible to make that kind of
diagnosis from MRI scan findings alone.
Many of the changes that have been
measured in autism (and most that are
measured in research) are not “lesions”
but changes in size or scale, or of timing
or coordination of signaling. The literature
does not exclude postnatal triggers,
though it does not exclude prenatal
triggers either. It may be different for
different people. At this point you can
read the literature as proof of prenatal
genetic changes or you can also interpret
it as consistent with early onset (and often
chronic, persistent) neuroinflammatory
or other pathophysiological processes—
people typically cherry-pick based on their
preconceptions. Systematic studies have
not yet been undertaken to clarify which
is the better interpretation, for one thing
Disclaimer
Information is not provided as medical advice. Parents / patients should research all information given. Every person’s physiology is unique. All
information provided as a reply should be discussed with the patient’s personal physician and / or autism or other specialist appropriate to the
symptom(s) or body system(s) involved in their individual situation, who provides the patient with regular medical oversight, monitoring, and lab
testing, and who keeps up-to-date on the most recent research and interventions. Beginning any significant biomedical or other interventions
that may impact physiology or making changes to an established regimen should be discussed with the patient’s physician in advance.
129
because this is a relatively new question
to be asking, since for most of the history
of autism brain research the assumption
was that this was a prenatal geneticallydetermined brain disorder, so thinking
outside of that box was not common.
Compared to the marked differences
in function between autistic brains and
brains of typically developing people, a
lot of the anatomical changes are not all
that impressive, and most MRI scans of
brains of people with autism would be
interpreted by a clinical neuroradiologist
as essentially normal (partly because
MRI does not pick up microscopic
changes such as inflammation and partly
because the changes in anatomy are
generally subtle and need to be measured
quantitatively, something done in research
but not for clinical purposes, since
these measures yield interesting group
differences but not values that are helpful
in diagnosis since there is a lot of overlap
with normal). Some of the functional
changes (such as alterations in signaling
related to sleep and sensory perception,
or seizures) could conceivably be strongly
related to chronic inflammation, oxidative
stress and/or mitochondrial dysfunction.
It would be enormously valuable to see if
we could document improvement in these
kinds of brain functional measures as a
consequence of biomedical treatment—
this would suggest that chronic cellular
dysfunction might be an important
contributor to behavioral “deficits” and
could potentially be improved. I address
a lot of these issues in my forthcoming
chapter: Herbert, M. R. 2009 (In
Press). Autism: The centrality of active
130
THE AUTISM FILE | www.autismfile.com pathophysiology and the shift from static to
chronic dynamic encephalopathy. Chapter
18 in Autism: Oxidative stress, inflammation
and immune abnormalities. Editors: A.
Chauhan, V Chauhan, and T. Brown.
Publisher: Taylor & Francis / CRC Press.
Question 2
What is the difference between
the different brain imaging
studies? Which is best to
determine how the brain
functions, such as for language
in children on the spectrum?
Response from
Harry Schneider, MD, PhD:
Patients often bring results of prior
PET (positron emission tomography) or
SPECT (single photon emission computed
tomography) scans to my office. At
Columbia University Medical Center,
where we analyze the function and
connectivity of the language areas of the
brain of children on the spectrum, we use
functional MRI (fMRI).
In general, brain imaging techniques
to examine brain function are based on
detecting small changes in blood flow to
visualize active areas of the brain. The most
active nerve cells use more glucose and
oxygen than neurons that are less active,
so detecting and mapping local changes in
cerebral blood flow form the basis for these
imaging techniques.
In PET scanning of the brain, a
radioactive tracer is usually injected into a
vein and accumulates in the brain, where
it gives off energy in the form of gamma
rays. This energy is detected by a device
called a gamma camera, which measures
the amount of radiotracer absorbed by
the brain. The camera often is used with
CT (computerized tomography) or MRI
(magnetic resonance imaging) to produce
special pictures offering details on both the
structure and general function of parts of
the brain.
A SPECT scan is a nuclear medicine
imaging technique that also uses gamma
rays and is also used with CT or MRI. A
SPECT scan detects radioactive emissions
that correlate with brain areas in real time,
which provides better event localization
and higher resolution images than PET.
This resolution is not sufficient, however,
to effect a higher resolution of the finer
features of the brain. Like a PET scan, it
reveals the major areas involved in normal
processing or disease.
Functional MRI offers the best approach
to analyzing the brain at work. fMRI is
based on the fact that oxyhemoglobin (the
oxygen-carrying form of hemoglobin) has
a different magnetic resonance signal than
deoxyhemoglobin (the oxygen-depleted
form of hemoglobin) or the surrounding
brain tissue. Brain language areas activated
by a specific task, such as a child with
autism listening to recordings of his
parents’ voices, utilize more oxygen than
the non-language areas of the brain.
Unlike PET or SPECT, fMRI uses
signals intrinsic to the brain rather than
signals originating from radioactive
compounds that are injected. Repeated
observations can be made on the same
individual because the signals from fMRI
are intrinsic and there is no loss of signal
due to external decaying radioactive
tracers; in essence, we can repeat an
image as often as we need to improve the
quality of the areas being studies. This
provides a major advantage over PET or
SPECT. fMRI also offers superior spatial
localization (currently a few millimeters),
as well as good temporal resolution (on
the order of seconds or less under optimal
circumstances, compared to minutes for
PET and SPECT). As a result of these
advantages, in my opinion, fMRI is the
technology of choice for studying normal
and abnormal functional architecture of the
human brain.
ISSUE 33 2009
131

Issue 33 2009 US$5.99 Can$6.99 The Autism File covering Autism

Transcription

Similar documents

What do sleep, diet and robotics have to do with autism?

High School Campus - Burlington County Special Services School

Websites that Work for The Special Education Classroom

WHAT WE`VE BEEN UP TO

PASC at BCSSSD - Burlington County Special Services School District

for Autism Conference 2015

World Autism Awareness Day celebrated

Recognizes Autism Awareness Month Autism Awareness

Poster - Macklin Symposium - Autism and the Military Child