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AUTISM FILE 1
POLLY’S PIECE
A Tale of Two Teens
Recently completed filming documents the
struggles families face in trying to get medical
treatments for their children with autism…
B Y P OL LY TOM M E Y
T
POLLY TOMMEY
Editor-in-Chief
Polly Tommey is one of the
world’s leading advocates for
children and families impacted
by autism spectrum disorders.
She has presented at the
European Parliament and
given voice to autism issues
before leaders of industry and
government. She is the founder
of both The Autism Channel, on
Europe’s Sky Television, and also
Autism File magazine, where she
serves as Editor-in-Chief. Her
book, Autism: A Practical Guide
to Improving
Your Child’s
Quality of Life
(co-authored
with Jonathan
Tommey) is
available via
Amazon.com.
b
“It is beyond belief that
both British families had
to find the money to fly
their sick children to
America and Bulgaria to
get a diagnosis for a disease
that would have had you
or me in an ambulance
and seen straightaway
here in the UK…”
a
he past months have kept me frantically busy with filming. Two years ago, we
started filming two British families who were desperate to get medical help
for their teenage boys. Jonathan Edwards was painfully thin and took hours
to eat a simple piece of chicken; his parents were told by the British doctors that
Jonathan had a fear of swallowing food, a common issue for people who have autism.
On the other hand, Jack D. ate loads but his problems included horrific selfinjurious episodes. He had a swollen head from constant banging—he would smash
his head against anything and everything to the point of giving himself black eyes,
and he made loud groaning noises rather like a cow in labor. Both sets of parents
were at their wits’ end trying to find alternative answers for the constant trauma
their boys were experiencing, all believing them both to be in agonizing pain. The
British doctors had no idea what to do with either of them.
Eventually, Jonathan flew to New York and Jack to Bulgaria. (Jack was in such
distress it took two attempts to even get him on the plane.) Both boys saw Dr. Arthur
Krigsman, and both were diagnosed with very severe bowel disease. I’m not going
to go into detail here as shortly their stories will be available for everyone to see.
It has been a long and difficult journey for both families—but our filming came
to an end last week following two years of horrendous struggle to get the disease
under control (it isn’t curable but with correct treatment can be managed). But the
struggle didn’t end there. There is also the ongoing battle with British doctors to
support treatment and accept the diagnosis, and also the families’ implementation
of the strict protocol that must be followed by all in order to achieve positive results.
It is beyond belief that both British families had to find the money to fly their sick
children to America and Bulgaria to get a diagnosis for a disease that would have had
you or me in an ambulance and seen straightaway here in the UK; we would have
been treated and given the care we needed for such a serious illness.
Why then do we hear over and over again that people with autism aren’t being
given the most basic medical attention? Why are people with autism handed over to
psychiatrists who tell parents they are medically cleared and even if not, the mind
must first be healed? Why are people with autism constantly being given totally inappropriate psychotropic drugs? One of our recent filmings in the USA took us to a five
year old girl on heavy medication for disorders and conditions she didn’t have; we
are seeing more and more of this. It is abuse at the highest level and it is happening
not just in the UK but also in America and around the world.
Our stories will be posted on www.autismmediachannel.com which is now also
the new home of the Autism File. Please enjoy this magazine, as always packed with
support, advice and practical strategies for dealing with the challenges autism places
upon families. If you know a family who is struggling, please tell them about us; our
videos and magazine are free—we just need an email address to get these invaluable
resources in their hands.
Stay tuned as we’ll soon be announcing the opening of ticket sales for our Give
Autism a Chance Summit in Austin, Texas next April. This will be a gathering like
no other, with input from experts in the areas that matter most to families dealing
with autism. We are proud to announce that Aiden Quinn and Rob Schneider will
be there ready to answer any questions you may have for them. Every part of this
event is interactive so everyone will have a chance to discuss the issues important
to them. Tickets will be limited because of venue seating availability, but we will be
live online for those who can’t make it to Austin. _
2
Editor-in-Chief
Polly Tommey polly@autismmediachannel.com
Executive Editor
Rita Shreffler rshreffler@autismfile.com
Art Director
Mary Francis McGavic production@autismfile.com
Editorial Assistant
Mollie Shreffler merilynn.shreffler@burrellcenter.com
Advertising
Director of Advertising and Marketing
Kimberly LindermanLMJOEFSNBO!BVUJTNñMFDPNr
Advertising Account Executive
Aimee AllenbackBJNFF!DJSDMFNHNUDPNr
Editorial Advisory Board
Mary Holland, Esq.
Mary Holland is managing director of the Elizabeth
Birt Center for Autism Law and Advocacy, and a board
member of the Coalition for Vaccine Safety.
Julie Matthews, CNC
Julie Matthews is a Certified Nutrition Consultant
specializing in autism, and author of Nourishing
Hope for Autism and Cooking to Heal.
James A. Moody
Jim Moody is a practicing attorney and Founder of Citizens
for a Competitive Economy. He is very active in causerelated advocacy and has dedicated himself to serving
the autism community for nearly two decades.
Shannon King Nash, Esq., CPA
Shannon is an attorney who has been featured as a tax,
finance and legal expert in numerous publications. She is
co-founder of Colored My Mind, an autism outreach nonprofit.
Stephen Shore, EdD
Stephen Shore is an assistant professor at the Ammon
School of Education at Adelphi University, teaching
special education with an emphasis on autism.
Chantal Sicile-Kira
Chantal Sicile-Kira is an award-winning author, speaker,
and leader in the field of adolescence and the transition
to adulthood. She is the past co-chair of the South
Counties Autism Regional Taskforce of the California Senate
Select Committee on Autism and Related Disorders.
Carol Stott
Carol Stott is a Chartered Psychologist and epidemiologist
specializing in the identification and assessment of children
and adults with autism and related conditions, and the cofounder of BeginningwithA, (BWA), a diagnostic training
and assessment consultancy based in Cambridge, UK.
Eric Uram
Eric Uram is Executive Director at SafeMinds, a
non-profit dedicated to helping our children by
stopping the environmental exposures triggering the
epidemic of autism and its related problems.
Anju Usman, MD
Anju Usman specializes in biomedical interventions for children
with ADD, autism and related disorders, and is co-founder of the
Autism Center for Enlightenment, a non-profit which supports
research, education and biomedical therapies for families in need.
Paul Whiteley, PhD
Paul Whiteley has researched autism spectrum and related
DPOEJUJPOTGPSZFBST)JTCMPHXXXRVFTUJPOJOHBOTXFST
blogspot.com) focuses on discussing various facets of autism and
related research.
Andrew Wakefield, MB, BS, FRCS, FRCPath
Andrew Wakefield is an academic gastroenterologist who has
QVCMJTIFEPWFSPSJHJOBMTDJFOUJñDBSUJDMFTCPPLDIBQUFSTBOE
invited scientific commentaries.
The content of the letters/articles and advertisements in Autism
File reflect the views of the respective contributor/advertiser, and
not those of the editor/publisher.
FEATURED CONTRIBUTORS
Christina Adams, MFA
Christina Adams is the author of the popular memoir A Real Boy: A True
Story of Autism, Early Intervention and Recovery (Berkley/Penguin). Her work
has been on National Public Radio, and in The Washington Post, The Los
Angeles Times, LA Times Magazine, CHILD magazine, and many others. She
has been a featured and keynote speaker at conferences across the country, including prestigious places such as Hamilton Health Care Center (in NJ), Center for
Autism and Related Disorders, National Early Jewish Childhood Educators, Autism Society
of America and Autism One. She has met with the head of a Congressional subcommittee
on investigating autism, and is an advocate for families.
Sophia Cosmadopoulos
Sophia Cosmadopoulos is an artist with a degree in Art History from Oberlin
College focusing on Studio Art. She has worked as an art consultant and teacher
with special needs populations at Creativity Explored in San Francisco, and in
New York at HAI, the Beacon Center for Arts and Leadership, as a volunteer
for Pure Vision Arts, and before her current position at PVA, at AHRC as an
Art Consultant. Sophia also has a strong interest in textile design and has worked directly with
designers in the clothing industry. She has worked collaboratively with other artists working in a
variety of disciplines.
David Kirby
David Kirby, a regular contributor to the Huffington Post since 2005 and
TakePart since 2012, has been a professional journalist for nearly 30 years,
and was a contracted writer for The New York Times. He has written for
several national magazines and was a correspondent in Mexico and Central
America from 1986-1990. He is also author of Evidence of Harm, a New York
Times bestseller, winner of the 2005 Investigative Reporters and Editors (IRE) award for best
book, and finalist for the New York Public Library Helen Bernstein Award for Excellence in
Journalism; Animal Factory, a highly acclaimed investigation into the environmental impact
of factory farms; and Death at SeaWorld, Shamu and the Dark Side of Killer Whales in Captivity,
which “tells the story like a thriller,” the Wall Street Journal said in a rave review. He is also
an experienced writing and media coach. More information is at www.davidkirbycoaches.
com and www.deathatseaworld.com.
Erik Nanstiel
Erik Nanstiel is the parent of a 14-year-old daughter with severe autism.
His professional background is in trade publications as an art director
and writer. He co-founded the Foundation for Autism Information &
Research, Inc. (www.AutismMedia.org), and is co-creator of Avatalker
AAC, a speech-communication app for the Apple iPad. He occasionally
volunteers for Autism One at their annual conference as a videographer.
Pamala Rogers
Pure Vision Arts studio and Expressive Art Program’s Dr. Pamala Rogers is
an artist, an arts educator and a licensed psychoanalyst who is a foremost
authority on supporting the creative process among people with neurodevelopmental challenges. She oversees all aspects of the PVA program as well as a
wide range of The Shield arts programs for children and adults.
Alix Strickland, BCaBA
Alix Strickland is an applied behavior specialist and founder and director
of the Le Chemin ABA VB Learning Center for children with autism and
other special needs in Paris, France. She is known as the “Green Behavior
Specialist” because she uses natural cleansers and organic foods at her center
in addition to making a lot of her own DIY, up-cycled therapy materials. She
coaches families and professionals in using ABA and Verbal Behavior strategies in France and
abroad. Her website is www.lecheminaba.com. You can follow her work on Facebook at https://
www.facebook.com/lecheminaba.
OCTOBER-NOVEMBER 2013
in this issue…
f e at ur e s
` A PURE VISION By Sophia Cosmadopoulos and Pamela Rogers . . . . . . . . . . 24
Creativity translates into learning life skills in NYC’s unique studio,
Pure Vision Arts.
` DO IT YOURSELF! By Alix Strickland . . . . . . . . . . . . . . . . . . . . . . 28
At-home autism therapies are eco-friendly and won’t bust your budget.
24
Adults with autism find both social
and vocational opportunities at Pure
Vision Arts.
` TIME FOR A CHANGE By Christina Adams . . . . . . . . . . . . . . . . . . . . 32
Know the out-of-home placement options—even if you believe
you’ll never need them.
` REPEATING HISTORY By David Kirby . . . . . . . . . . . . . . . . . . . . . . 38
Investigating Australia’s history of Pink Disease highlights
its many similarities to autism.
d e pa r t m e n t s
` ALL WE CAN HANDLE By Kim Stagliano . . . . . . . . . . . . . . . . . . . . . . . 8
Gaining some perspective when it comes to art and autism.
` LIVING WITH AUTISM By Maria Milik . . . . . . . . . . . . . . . . . . . . . . . . 10
28
Autism therapies don’t have to be
expensive to be effective.
Let your child guide the way in expanding limited areas of interest.
` NUTRITION FRONT By Julie Matthews . . . . . . . . . . . . . . . . . . . . . . . . . 14
Autism and agression: can certain foods be triggers?
` SENSORY SMARTS By Lindsey Biel . . . . . . . . . . . . . . . . . . . . . . . . . . 18
Use these Top 10 Art-Smart Tips to help sensitive artists thrive.
` GREEN HOME - HEALTHY KIDS By Deirdre Imus . . . . . . . . . . . 44
Practical strategies for going green on a budget.
` NUTRITION SOLUTIONS By Paul Whiteley, Mark Earrnden
& Elouise Robinson
32
A guide for accessing residential options
for your ASD child
. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
From bench to kitchen: introducing the Autism Food Club.
regulars
` POLLY’S PIECE . . . . . . . . . . . . . . . . . . . . .1
` TIPS FROM THE TEAM . . . . . . . . . . . . . . 42
` FEATURED CONTRIBUTORS . . . . . . . . .2
` WALLIS: 1 IN 64 . . . . . . . . . . . . . . . . . . .51
` WAKEFIELD . . . . . . . . . . . . . . . . . . . . . . .12
` RESEARCH ROUNDUP . . . . . . . . . . . . . . 52
` GIVE AUTISM A CHANCE . . . . . . . . . . 19
` QUESTIONS & ANSWERS . . . . . . . . . . . 54
` THE WAY I SEE IT . . . . . . . . . . . . . . . . . . . 20
` SPECTRUM MUMMY . . . . . . . . . . . . . . . . 59
ON THE COVER: Autism File contributor Maria Milik and her sons, Leo and Joey.
Photography by Esmeralda Kaiteris.
38
Mercury has long been known as a
powerful toxin, causing harm to both
past and present generations.
5
Mind’s Eye
Art across the Spectrum
“ F I SH O N M Y H E A D” ACRY L IC B Y C H R I ST I A N E A R LY
C
hristian Early’s first book as an
illustrator is Can You See Me? A
View of Our World by an Adult with
Autism by Mayra Ron (Tate Publishing,
2009). Painting for this twenty-nineyear-old adult with autism, however,
did not come easily. Christian began
his painting career at age seventeen
with mere awkward lines, his poor
fine-motor skills preventing him from
excelling in this visual art. However,
with the determination of his artistic
mother and with the persistence of
many teachers, Christian has succeeded in painting how he sees his world:
funny and comical.
His early art included lions’ eyes
that jumped out at you and eagles
that looked deeply into your heart,
and it has now evolved into cartoonlike characters that bring a smile to
many faces: funny ladies with long
arms or pointed fingers, portrayals of
himself with his red-haired mother,
cousins, and grandma alongside other colorful and humorous creations.
He reminds us that it is not the disability that defines a man. What
distinguishes a man from others is
his courage to unleash his artistic
expression no matter the diagnosis
or label.
Christian resides in south Florida.
He will be participating in an art exhibit curated by The Art of Autism at
the Good Purpose Gallery in Lee,
Massachusetts in February 2014.
His art is part of the book The Art
of Autism: Shifting Perceptions by
Debra Hosseini. _
FIND OUT MORE
` The Art of Autism
www.the-art-of-autism.com.
`You can buy Christian Early art cards at
www.autcards.com
6
LETTERS TO THE EDITOR
Speak Your Mind
AUTISM
Going Digital!
FILE
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I have to confess that I was
TOP 20
milies
Sensogiry
Autism Fa
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disappointed when I read that the
Strate es
Hope and
Autism File was no longer going to be
ATING
NAVIG
in print as I always looked forward to
TEM
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THEtheSmost from
receiving my copy in the mail, reading
Get
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your ch
it, and then passing along to other
oom
Classr1 0 1
parents. However, having seen the firstt
ectehch: nology
T
digital issue, I’m excited about this
How sforming
is tran ucation
ASD ed
new way of accessing the articles—and
d
tion
Prevengies
being able to forward the link to otherss
StrateASD triggers
lets me reach a lot more people who
Avoiding
truly need the information. Nice job,
Autism File!
—Sarahh
3
ULY 201
issue 50
TIME SMA
SUMMER
SAFETY
RTS `
TIPS TO
CONQUE
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The new magazine is awesome!
I’d been hoping you would come
up with a digital version of this
incredible resource—I’m usually at
my computer anyway and can just
dip in and out of the pieces at my
own speed. The fact that it’s free is
such a nice bonus too!
—Elizabeth
Revolutionary Road
As a big fan of the Thinking Moms’
Revolution—as well as the mother of
a vaccine-injured 12-year-old girl—I
was happy to see the interview Polly
Tommey did with Lisa Goes. It really
is an outrage that so many of our
kids don’t get the medical attention
they deserve and in fact are often all
but ignored by most in mainstream
medicine. Thanks for helping get the
word out that autism is a medical
condition and our kids are in critical
need of treatments.
—Nancy
Risk Management
ISS
Reflections
What happened to Alex Spourdalakis
is heart-wrenching and painful to even
think about. Thanks to Dr. Wakefield
for writing about it in the last Autism
File issue. I agree that this was a
desperate family and while this type
of killing is never justified, I fear we’re
going to see more of these cases in the
future if there’s not a huge change in
the way society perceives autism. I don’t
think most people realize that there’s
a dire lack of medical treatments and
services for this population.
—John
Thank you so much for the incredible
article by Dr. Usman on preventing
autism in future generations. This
couldn’t have come at a better time
as my brother and his wife are trying
to start a family and given the fact
that both my children regressed
into autism following vaccines, they
really need this information. I’ve
been trying to gently make some
suggestions about ensuring a healthy
pregnancy but this article really says
it all for me. I sent them the link as
soon as I read the piece and they’ve
been very receptive to it.
—Karen
I only wish I’d had this article 22
years ago when my husband and
I got married and began thinking
about starting a family. We had our
first child a year later, and during the
pregnancy, I was very conscientious,
doing everything my doctor told me
to and reading all the “baby books”
available. We just didn’t know back
then what we know now about the
potential for serious harm from
vaccines and other toxins. Several of
my friends are getting ready to become
grandparents and I’m sharing this
article with all of them.
—Faye
Navigating the System
I love the new digital format! There were
so many great articles in this issue and
I especially appreciated the article on
IEPs from Cathy Jameson. My son was
diagnosed with autism two years ago
and is now entering second grade at a
new school so I was even more
stressed out than usual about
st
starting the whole process
st
aall over again with a new
tteaching staff. After reading
tthrough Cathy’s piece, I felt I
was ready to take it on—and
it’s gone surprisingly well.
Thanks so much, Cathy and
Autism File!
—Shelley
Must-have resource
Wow! I didn’t think Autism File could
top itself, but this issue was so full of
amazing articles that you definitely did!
Autism File is one of the best resources
for families out there. I can’t get enough
of the articles about the medical care
(and lack of) in our community and the
fight to change things. And whether it
was an article on food, apps, medical,
sensory, support, school, prevention…
something hit home for everyone this
month. Add to that amazing talents,
inspiring people, passionate advocates,
and it’s FREE? Autism File is, without
question, THE BEST!
—Shannon
we want to hear from you!
Email your letters and photographs to us at the
Autism File, rshreffler@autismfile.com.Letters may be edited for length, clarity, and style.
Your correspondence is important to us and we value your input; however we’re unable to publish
or respond to every letter. All letters submitted become the property of the Autism File magazine.
PRODUCT PICKS
7
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READ ALL ABOUT IT…
Autism and Spirituality:
Psyche, Self and
Spirit in People on the
Autism Spectrum
The spiritual
dimension of the
lives of those
affected by autism
is often overlooked
or thought to be
non-existent. The
author, teacher
and lecturer Olga
Bogdashina, uses both research and
real-life experiences to demonstrate
the spiritual aspect of life on the
spectrum for both verbal and nonverbal individuals. Providing a
framework for understanding the
nature of spiritual growth and sense
of self, the book also points out
practical strategies for families and
caregivers in supporting the spiritual
needs of people with autism.
Olga Bogdashina
(Jessica Kingsley Publishers)
Lather & Love
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100% natural and organic handmade
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` soaps are hand poured and hand cut
` butters are hand blended and poured
` soaps are air-cured for 4-6 weeks
` the best skin-food your money
can buy
— www.latherandlove.com
From Like to Love For
Young People with
Asperger’s Syndrome
How People with Autism
Grieve, and How to Help:
An Insider Handbook
One of the biggest
challenges for
people diagnosed
with autism is the
appropriate
expression of
affection, both
verbally and physically. This book
serves as a practical guide for parents to work through with their
child to establish a better understanding of different types of
affection and how to appropriately
express those feelings. Using a
series of structured, simple activities for families to complete at their
own individual pace, the book not
only assists the individual with
autism, but leads the entire family
to a better comprehension of the
communication challenges their
loved one faces.
Tony Attwood and Michelle Garnett
(Jessica Kingsley Publishers)
The manner in
which those
diagnosed with
autism handle
the loss of a
loved one is
often quite different than what
society typically
expects, leading some to perceive
a lack of empathy on the part of
the individual with autism. This
handbook offers practical strategies for understanding and
supporting people on the spectrum experiencing grief over the
loss of loved ones, providing
guidance on everything from
how to break the news of a death
to dealing with the loss of a pet.
Deborah Lipsky
(Jessica Kingsley Publishing)
Send your tips on great reads and useful
products to info@autismfile.com
8 ALL WE CAN HANDLE
Art from the Heart
Putting things into perspective when
it comes to autism and creativity…
BY K IM STAGLI ANO
I
’m in a Facebook group that’s for
moms in my Fairfield, Connecticut town and has over 1800 members. They’re an interesting group of
women ranging in age from twenties
to grandma age (whatever that means).
Carefully vetted, there’s a list that circulates asking to confirm that Jane or
Mary lives in town and isn’t trying to
“sneak” into this exclusive group. If
you’re pregnant, you might slide in
but you’d better fork over an ultrasound to prove you’re on your way to
Mommy-hood.
As a veteran
autism Mom—my
oldest is 18 and my
baby is 13—I read most
of the posts on this list with
a jaundiced eye. By jaundiced
I mean, “Are you freaking kidding me?” If I were Mother Teresa,
a,
I would be kind and understandnding with the spate of questions from
women who seem never to have heard
of Google. Here are some of my favorr
ites, and I am not making these up for
your enjoyment:
“Where can I get take out salad delivered to my house?”
“My three year old finally asked for a manicure! Where can I take her?”
“I just bought chicken. What should I do with it?”
“Need ideas of what to buy my five year old for Christmas. She already has everything.”
“What Chinese restaurants deliver?”
“I need a recipe for banana bread. Anyone?”
“We’re going to DC on vacation. Where should we stay?”
In the last issue of Autism File, I
wrote about the old fashioned Coffee
Klatch—women of my mom’s generation sitting around the kitchen table
kibitzing about daily life over coffee
KIM
KI
M SSTAGLIANO...
TAGLIA
IAN
NO..
...I’m Kim Stagliano, wife,
mom, writer, tired! My
husband and I have three
gorgeous girls—who have
autism. Kind of impossible,
considering autism affects
boys 4:1 over girls. Mark and I
have learned that impossible is often inescapable though. My book, All I Can Handle: I’m No
Mother Teresa, is a humorous look at a life that
has been anything but ordinary or easy—and
yet is full of laughter, joy and love. I promise, you
won’t need a Prozac to read it. I’m Managing
Editor of www.ageofautism.com, the nation’s
first daily web newspaper about the autism
epidemic. I also write for The Huffington Post and
the MSNBC TodayMom’s blog. I graduated from
Boston College with a certain autism dad named
Doug Flutie. My husband Mark and I live in CT
with Mia, Gianna and Bella. _
and Sara Lee pecan coffee cake. I
know that Facebook is our version
of the Klatch and I love it. But honest to God, “Where can I get take out
salad delivered?”
If I were a lesser woman, one who
did not have to dash about town running into fellow group members, I
would have answered each question
like this:
“Go to the darn Stop & Shop, make a salad at the salad bar, drive it home.”
“Any one of the 435 nail salons in our town.” (The only business that outstrips nail salons
here is banks; I suppose so you can get cash to tip your manicurist.)
“Cook it? Surely there’s a cookbook collecting dust SOMEWHERE in your house. Find the
oven manual first—it’s probably IN your oven still in its plastic wrap.”
“Get her an FAO Schwarz gold card and a prepaid divorce for thirty years from now. And
give my love to little Veruca, Mrs. Salt.” (Charlie and the Chocolate factory reference there.)
“Google.”
“Google.”
“GOOGLE!!!!!!”
Honestly, these women vote! Well,
they complain about town issues and
school funding, but I’m not sure they
actually go to the polls and vote. After
all, what if there’s a sale on salads with
a side of manicures that Tuesday?
ALL WE CAN HANDLE 9
There is one question
that appears from time
to time that never fails to
make me snort out loud.
“What do I do with myy
(insert trendy namee
of the day)’s artwork
k
that comes home from
m
school?” The answers
pour in about Pottery
Barn picture frames and
shadow boxes, and acid
free paper and cedar-lined
storage cartons all meant to
protect the precious art until
(trendy name) is an adult.
My answer? Toss it in the
trash.....
Ah, but I am mom to threee
teenaged girls seriously affected
d
by autism. I am as jaded as a Forest
Green Crayola crayon.
Every Mother’s Day, camp day, and
major holiday my girls come home
with art—it looks just like the art
trendy name child brings home from
preschool or Kindergarten. And it
breaks my heart.
If I saved all of their art, I’d need a
storage facility. Imagine that episode of
Storage Wars. “You’ve successfully bid
on 407 sheets of scribble, 32 crooked
ceramic cups, 123 coffee filter flowers,
97 Popsicle stick boxes, 63 handprint
paintings, 19 Sharpie-signed T-shirts
and 86 sun-catchers!”
As my kids are growing older, the
reminders of their lot in life sting a
rem
little more, the pain lasts a wee bit
longer. And a simple piece of paper
long
can make me cry.
I rarely respond to questions
oon the FB list. I don’t live in their
world. My kids don’t live in their
w
kids’ world. But I’ve made a
point of being a public figure
and people know me in town.
Every so often I’ll get a PM from a
member, “I have a question about
m
my son’s health, his development,
m
his next ped appointment—can you
help
h
l me?”
I always answer—“YES. I will help
you,” in the hope that I can help them
paint a different picture for their child.
Trendy name or not._
NOW
IN
PAPERBACK!
www.kimstagliano.com
10 LIVING WITH AUTISM
The Sky’s the Limit
Follow your child’s lead to transform
restricted interests into endless possibilities…
BY MARIA MILIK
I
’ll never forget the
day that my son’s
first grade teacher
told me I needed to get
him to stop obsessing over things he enjoyed. She said the best
thing I could do is take
those things away from
him so he would stop
thinking about them. I
couldn’t disagree with
her more. I wondered if
she would ask the parents of neuro-typical
kids to also take away
items of interest—football, cars, etc.—to gain
compliance?
I truly believe that in ONE THING LEADS TO ANOTHER— With a little guidance, your child’s limited interests can quickly expand
your own home, your in myriad directions.
child has every right to
pursue and enjoy the things that make that you can’t help your child expand the planets or dinosaurs but in fact, just
him or her happy. For some, that thing their repertoire of interests. A little guid- like their typical peers, there are myriad
may be sports or trains and for others ance and coaching can go a long way and diverse potential topics of interest
it may be collecting DVDs from their towards teaching your child about some out there. So how do you help your
favorite TV shows, or maybe there’s an fundamental topics to bring him up to child hone in on something that is more
interest in keys from different car manu- speed with his peers—who knows, he advanced and substantive? It may not be
facturers. (This was my youngest child’s may even end up surpassing them in as hard as you think.
For instance, my own son was into
obsession for a few years.)
some areas!
the planets when he was just two years
We often hear from professionals
old. This was sparked from an episode of
that many children with autism tend to EXPANDING THE OPTIONS
obsess on topics of interest. In a school It’s not uncommon for a child on the Blue’s Clues on the planets that he would
setting, that may not always be appro- spectrum to be interested in things like watch over and over again. I took him to
priate. At home during the downtimes,
however, I see nothing wrong with letJust Give Him The Whale!
ting kids be involved with topics and
items of special interest. That’s not to say
Two of the best books I have read on dealing with limited
MARIA
MARI
MA
RIAA S. MILIK...
MILIK
… has two special boys, Leo, 10,
and Joey, seven. Passionate
about advocacy for autism since
Leo was a toddler, Maria has
read and researched extensively
about ASD and potential
treatments. Vowing that no
parent should have to go through this alone,
she has developed a national and international
network of parents, educators, therapists,
nutritionists, and doctors. _
interests and fixations are written by Patrick Schwarz and
Paula Kluth. Pedro’s Whale, and Just Give Him the Whale!:
15 Ways to Use Fascinations, Areas of Expertise, and
Strengths to Support Students with Autism. www.paulakluth.
com/books-and-products/. Both of these books are aimed
to inspire educators to utilize the talents and “obsessions” of
children on the spectrum as tools for learning. My suggestion is to read these books and then pass them on to your child’s teacher. I
only wish they were available back when my child was in first grade!
LIVING WITH AUTISM 11
b
If you look closer,
the library to look through simple board
books on the topic. We also went to our
city’s science museum and found CDs
featuring songs about the planets.
He quickly mastered and outgrew
these items and we moved on to the
adult section in the library for books
that contained more detailed information and higher quality outer space
images. We would frequently get on
the NASA website to see what was
going on with our nation’s space missions. We talked about what astronauts do, how they needed protective
suits to go into space, what they ate in
space, etc.
My son then became interested in the
different environments on the various
planets. This gave me an opportunity to
teach him about the environment that
we, as humans, need in which to survive. By the time he was four years old,
he had mastered more about the topic
than I had ever learned throughout my
years in school.
REFINING THE FOCUS
Realizing the possibilities from all of
our “space explorations,” I encouraged
him to pick a planet and concentrate
only on that for a while. I explained
you’ll see that they do,
indeed, have strong
interests—but don’t
have the tools to really
delve into them.
a
to him how Earth had so much more
going on than the other planets in our
solar system because of its incredible
number of life forms, and that’s the
one he settled on.
At first, he learned about weather
patterns, then, different terrains, animals that lived anywhere from deserts
to the wetlands, the continents and
finally centered on the United States. I
introduced the “state quarters” to him
and he started a collection of those.
His interest then expanded to the
presidents (which he started to learn
Fostering interests on a budget
Like many parents who have children
on the spectrum, I struggled to find
something—anything—that my child
would take an interest in when he
was younger. I found much success in
buying toys and other items at garage
sales and resale shops, discovering
that I could buy a box full of things
for my son to explore for less than the
cost of one item in a toy store. I’d give
them to him one at a time and wait to
see which things piqued his curiosity.
After a few days, if he didn’t show an
interest, I would move that item into
storage and pull out something else
for him to explore.
It’s important not to overwhelm your
child with too many things at one time.
Be sure to rotate the things you allow
him or her to play with. This will cut
down on any sensory overload and help
your child focus on just that one thing.
Also, be sure to get down at your child’s
level and show him how to play appropriately with the toy or item. Most
of our children need guidance at first.
Although it’s fine for them to explore
and be creative with toys, it’s important
to teach them the proper use of them
as well. In doing so, you will be teaching
them fundamental techniques that will
carry over to other parts of their lives.
The best part is that you’ll be building
trust and developing a great relationship
with your child which is critical for social
and emotional well-being.
because of his newfound interest in
coins) and from that, he developed an
interest in American history.
To this day, that same first-grader
(now in the fifth grade) is still interested
in anything related to space (although
it isn’t an obsession anymore), but he
is also well versed in American history
and geography and continues to collect
coins. Even though his current obsession
is “MineCraft” (a video sandbox game
which allows players to build constructions out of textured cubes in a 3-D
world), he has incorporated his previous
knowledge about all of the things he had
learned in the past and has been able
to create a virtual world that blows his
typical peers away.
A LITTLE DETECTIVE WORK
I’ve known quite a few children on the
spectrum who seemingly don’t have
anything that interests them. If you look
closer, you’ll see that they do, indeed,
have strong interests—but don’t have
the tools to really delve into them.
If you have a child who seems to
always be into touching anything electronic, instead of trying to get him
to stop touching these things, go to
your local resale shop and purchase
a bunch of old telephones, radios or
even a TV. You can put these items
in a box or area accessible to your
child and let him know that he can
take these items apart all he wants.
Sit down with him, show him how
there are tools to help put these items
together, and that by using those same
tools, the items can be taken apart.
Show him what the inside of an electrical cord looks like, and explain that
each of the wires serves a purpose.
If you’re getting no response from
your child, move on to a different item
until you see a spark of interest. If he’s
not at a point where he can be left unattended for short periods of time with
these items, there is a good chance you
can find a video or tutorial on the topic
online. Don’t forget to search for “kidfriendly” sites, especially if the topic is
something that would normally not be
something in which a young child would
show interest. _
12
WAKEFIELD
Sweet Home
Reflections on misplaced perceptions
of what constitutes a hate crime…
BIGSTOCK
B Y A N D R E W WA K E F I E L D
A
nother day—another death. Actually two to be precise: Marilyn Edge of Scottsdale, Arizona
attempts suicide by crashing her propane-filled car after killing her “vaccine damaged” autistic son and her
daughter in a Costa Mesa hotel room.
Meanwhile, Zachery Lassiter launches a petition calling for Kalamazoo
mother Kelli Stapleton to be charged
with a federal hate crime following her
failed attempt to take the life of her autistic daughter. Her own attempted suicide
also failed.
Three days ago, I sat in Room 105
of Maybrook Courthouse, Illinois.
Among the unhappy souls paraded
before the judge were Agatha Skrodska
and Dorothy Spourdalakis, charged
with first-degree murder following the death of Alex Spourdalakis,
a name that is now all too familiar
within the autism community.
As I sat there, I thought of Oprah.
Not because we were in Chicago or
AANDREW
NDRREW WAKEFIELD,
ND
WAKE
MB, BS...
...is an academic gastroenterologist.
He received his medical degree
from St. Mary’s Hospital Medical
School (part of the University of
London) in 1981. He pursued 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 was
awarded a Fellowship of the Royal College of
Pathologists in 2001. He has published over 140
original scientific articles, book chapters, and invited
scientific commentaries. In the pursuit of possible
links between childhood vaccines, intestinal
inflammation, and neurological injury in children,
Dr. Wakefield lost his job, his career, his Fellowships, and
his medical license. He is co-founder of the Autism
Media Channel, a TV and video production company
that seeks to bring awareness and hope to those
interested in childhood developmental disorders. _
because I was missing a morning chat
show, but because racism is, rightly, a
federal hate crime. Specifically, I was
reflecting on Oprah’s acclaimed role as
Sethe in the 1998 movie Beloved, based
upon Toni Morrison’s award-winning
book of the same name.
Sethe is a slave working on the
“Sweet Home” plantation of a sinister
psychopath known as Schoolteacher.
There, she is raped by Schoolteacher’s
nephews. When Sethe complains to
Mrs. Garner, Schoolteacher’s sisterin-law, the latter confronts him with
the young men’s crimes. In retaliation, Schoolteacher and his nephews
beat Sethe. Heavily pregnant with her
fourth child, Sethe plans to escape
but while searching for her husband
she is trapped in a barn by her nemesis. Schoolteacher’s nephews hold her
down, rape, and humiliate her while
their uncle stands by, encouraging
them and invoking the Lord’s justice
upon Sethe.
Sethe runs away from Sweet Home
and eventually reaches the home of her
mother-in-law, Baby Sugg. However,
Sethe’s initial happiness is short-lived
when Schoolteacher comes to reclaim
her and her children. In desperation,
Sethe slits the throat of her older
daughter and attempts to kill her other
children. She later justifies her decision without apology, claiming that
her children would be better off dead
than enslaved.
Sethe is haunted throughout
the movie by a poltergeist named
Beloved—the ghost of her murdered
daughter. Nonetheless, Sethe remains
free—haunted, unhappy, but free.
Haunted, miserable, and incarcerated, Marylin Edge, Kelli Stapleton,
Dorothy Spourdalakis and Agatha
Skrodska will share cells with their
respective ghosts. And face calls for
charges of hate crimes. For Dorothy
Spourdalakis and Agatha Skrodska at
least, the prosecution is demanding the
harshest sentence allowed by the state
of Illinois.
In Beloved, Morrison vividly describes and Oprah portrays a hate
crime. But the crime, the hate crime—
the contempt for a young black slave
woman, the casual acceptance of her
repeated sexual and physical violation,
her perceived status as nothing more
than chattel—comes from her white
master and his disgusting nephews.
Worse still, it comes from the God–
fearing American society of the day.
Sethe’s desperate act, committed in
the face of her family’s otherwise inevitable return to slavery, is a decision
taken by a mother who loves her children, one who determines that, in the
face of chronic abuse and institutionalized hatred, they should not suffer
her fate.
Meanwhile, reporter Rosemary
Parker of Michigan’s MLive.com,
covering the news in Kalamazoo, suggests that, “The question at the heart
of an unhappy conversation in the
autism community is ‘Does sympathy
for one group constitute hurtfulness
toward another?’”
Is this really the question? I don’t
remember it ever being asked following the release of Beloved. The
movie brought more pressing issues
to the forefront. _
WAKEFIELD
13
Autism: A Game-Changer
A Great Documentary Can Change People’s Minds:
Shooting for Nothing Less
The Autism Media Channel was started by a mother and a physician who are not
prepared to remain silent about the iniquities and injustices faced by autism families.
Film—unambiguous and universally accessible—is their chosen medium. During the
shooting of an autism reality series addressing the failings of the healthcare system,
we came into contact with young Alex Spourdalakis. For that system to change, his
extraordinary story needs to be told.
Engraved into the short life and tragic death of Alex Spourdalakis is the history of
autism—a systematic failure on almost every level: medicine, psychiatry, social services,
the pharmaceutical industry, public health, health care insurance, and the media.
With unique and unprecedented footage that captures the prelude to a killing, we
have teamed up with A-list professionals to put that story together as a documentary.
Now we need you to help us tell the world.
On Indiegogo NOW — Go to http://www.indiegogo.com/
projects/who-killed-alex-spourdalakis--2/x/4604965
continued...
14
NUTRITION FRONT
Autism and
Aggression
While causes aren’t always clear,
certain foods are emerging as
frequent contributors to aggressive
behaviors…
BY JU LIE M AT T HEWS
JULIE
JUL
JU
LIE MATTHEWS...
MATT
TTHE
HEW
WS
…is a Certified Nutrition
Consultant, who has been specializing in autism and related
disorders for 10 years. She is
an expert in applying nutrition
and diet to improve health and
aid systemic healing in children.
Julie is the author of the award-winning books
Nourishing Hope for Autism and Cooking To Heal,
and is a frequent autism conference presenter. Visit
Julie’s website at www.nourishinghope.com. _
though, we will
focus on foods
that can trigger
aggression from
consumption.
GLUTEN,
DAIRY AND
FOOD
ALLERGENS
There are many
examples of gluten and dairy causing aggression including published
articles and case studies, and myriad
online anecdotes.
There are likely a number of ways
gluten and dairy can cause aggression. While all of the mechanisms
have not been identified yet, I have
Potential causes
of aggression:
` An imbalance of neurotransmitters
or hormones.
` Pain (often gastrointestinal).
Parents and physicians report that
for some children, when serious GI
disorders are addressed, aggression
has been known to disappear.
` Low blood sugar. This can create
feelings of anxiety and a sense of
urgency.
` Certain nutrient deficiencies.
` Food reactions.
S.
S Braswell
B
ll
A
ggression is a difficult—and
sometimes devastating—
sy mptom that can occur
in children for a variety of reasons,
some known and some unknown.
Some of these are nature and others
are nurture.
It’s a difficult area to study and
understand for many reasons, especially for children and adults with
autism who cannot speak. When
aggression is present in an individual, it affects the entire family, with
parents citing it as one of the most
stressful aspects of their day-to-day
lives. Because of the safety risks—to
the individual with the aggressive
behaviors and those around him or
her—it’s very important to gain an
understanding of the causes so they
can be effectively addressed.
Certainly, aggression can happen
from the frustration or anger associated with a child being denied a
food. For the purpose of this article
some theories. If you are eating these
foods and creating opiates, opiates
themselves can cause mood changes.
Additionally, opiates peak and drop;
“withdrawals” from these opiatecompounds can cause irritability and
aggression. Also, pain from these
foods could cause aggression.
Other food allergens can also
cause aggression, so there are likely
other ways aggression is triggered
from food. Doris Rapp, M.D., explains in her book, Is This Your Child,
how aggression can be a symptom of
food allergy and describes a variety
of child case studies where a food
allergen (specific to that individual)
caused aggressive behavior. It could
be wheat, dairy, corn, soy, oranges, or
other foods. In these cases, they are
associated with allergy or intolerance
in the individual.
A gluten-free and casein-free
(dairy-free) diet is often a great place
to start with dietar y changes, as
NUTRITION FRONT 15
SALICYLATE FOODS
Grapes
Apples
Strawberries
Blueberries
Raspberries
Melons
Tomatoes
Oranges
Honey
Almonds
Herbs and Spices:
Cinnamon, cumin, turmeric,
rosemary and more
b
there are so many ways these foods
can negatively affect children.
When aggression is
PHENOLS AND SALICYLATES
present in an individual,
In my one-on-one nutrition practice
I’ve found phenols, salicylates and
amines are the foods that are, in my
experience, by far the greatest causes
of aggression.
Artificial additives (most are
“phenols”) are compounds that can
trigger irritability, sleeping problems, hyperactivity and aggression.
Food additives are a well-known
cause of aggression—Dr. Ben Feingold and others have been studying
it affects the entire
family, with parents
citing it as one of the
most stressful aspects of
their day-to-day lives.
a
this and publishing papers for decades. Dr. Feingold stated in his paper “Dietary Management of Juvenile
Delinquency” that he had 60-70%
success with an additive-free diet “for
control of behavior.”
In addition to “artificial phenols”
there are “natural phenols” in the
form called salicylates. Salicylates
have a phenolic structure, or aromatic
chemical ring, that occurs naturally
in fruits, vegetables, nuts, herbs and
spices, and other plant foods. These
foods are rich in wonderful nutrients,
but if your child has trouble “detoxifying” the salicylates, they can be a
big problem, causing significant aggression, hyperactivity,
and many other symptoms.
One of my client s, a
10-year-old boy, had daily
aggression toward his family
and therapists. It would happen dozens of times per day,
seemingly out of the blue.
People were getting hurt and
it was a scary situation for everyone involved. I suspected
salicylates as the culprit, and
after a dietary trial removing them, his aggression virtually disappeared—it went
NUTRITION FRONT
from 50 times per day to one time
a month (and likely that was an accidental exposure)!
reduces aggression for those who don’t
tolerate them.
Aggression can have so many various causes, and food is not the cause
for everyone. However, what is clear is
that if foods are triggering aggression
for a child, removal of those foods
can make a world of difference in
decreasing aggression, and huge improvements in the quality of everyone’s life can occur.
AMINES AND GLUTAMATES
FURTHER RESOURCES
BIGSTOCK
Amines are a different natural food
chemical that are processed by the
same detoxification pathway, and
therefore, often create similar reactions. People with salicylate sensitivity are more likely to have amine
or glutamate intolerance. Amines
and glutamates are found in fermented foods including sauerkraut
and yogurt, salami, smoked meats
and fish, bacon, canned fish, and
brot h s. Some t ime s I f i nd it i s
amines, not salicylates, that are the
main culprits.
Glutamate also comes in the additive form of MSG (monosodium
glutamate). One client I worked with
was a teenager; he was very aggressive and only wanted to eat certain
things. When I looked to see what
they all had it common, it was MSG
as an ingredient. For him, removing both MSG and a food sensitivity
made a huge improvement and his
aggression diminished dramatically.
For children with aggression, I
always explore the possible role of
salicylates, amines, and glutamates
for causing or contributing to the reaction, as I have seen many times in
my practice that removing these foods
For a more in-depth discussion, a
list of common reactions and symptoms, foods containing salicylates,
amines, and glutamates, as well as
supplement support see my book,
Nourishing Hope for Autism. If you suspect salicylates and phenols, below
are some additional resources to get
you started:
` www.Feingold.org
` www.FedUp.com.au
` www.Allergy.net.au _
Product Spotlight
Ipiit, The Food Ambassador, is a smart-phone
app that helps you guide food choices based on your individual parameters. It
lets you set up choices including: no MSG, no GMO, no high fructose corn syrup,
and it even has gluten-free and dairy-free choices. When you scan a product at
the store, the app tells you if the packaged food meets your food parameters, and
if not, why not.
It’s a great GF/CF app, that sorts through the label and let’s you know if there are any
ingredients and food additives you are trying to avoid. When you are tired or forgot
your glasses, it’s easy to make mistakes when reading a label. Ipiit makes it easy.
It includes gluten-free, wheat-free, milk protein-free and egg-free, but it does
not include soy-free or peanut-free at this time (although it may in the future).
It’s great if you’re looking for an app that includes GF/CF as well as GMO-free and
food additive-free choices. And it’s simple to use: point your phone at the label
and the app does the rest.
BIGSTOCK
16
NUTRITION FRONT 17
From the Bookshelf
People often ask me my favorite books, particularly on the nutrition and autism/ADHD subject. I have hundreds of books that overflow
three bookshelves in my office, most of which I’ve read cover to cover. I decided to
start a blog series on my NourishingHope.com website called “From the Bookshelf” and
d
thought it could be fun to share my first of the series with the Autism File.
Practical Paleo by Diane Sanfilippo.
I highly recommend it. The book is beautiful,
very informative, and packed with hundreds of recipes. All of the pages are full color,
with photos for all recipes, and tons of beautiful nutrition and food charts. Also, it’s
Paleo so it’s naturally gluten-free, dairy-free, and grain-free and provides many recipe
choices for families on GF/CF, SCD, GAPS, or Paleo diets.
Even when you don’t need a full grain-free diet, most of us can benefit by getting
more vegetables and less grains. Normally, so many snacks and recipes center
around refined carbohydrates: breads, sandwiches, muffins, etc. Paleo recipes are a
great way to get inspired to make healthy and tasty snacks and meals.
Practical Paleo includes great nutrition information on digestion, leaky gut, and blood sugar
regulation, and explains how dietary choices can help. There are 30-day meal plans and so much more.
Get this book—you won’t regret it!
covering content that matters, in every issue
`
`
`
`
`
`
`
Nutrition
Education
Therapy, behavior & life skills
Biomedical treatments and interventions
Research
Try It—Taste It—Worth Reading
Day-to-day assistance and support
“I love Autism File and
always recommend it to
friends and fellow support
group members. It truly
is a springboard for
recovery. I love that!”
Sylvia, Granite Bay, CA
Garden Fresh Recipes | Latest Research | Nutrition News
Gard
J U N E - J U L Y 2 0 13
ISSUE 50
Hope and
an Help for Autism Families
PARENT POWER
How Working As
A Team Can Make
A Difference
11
SAFETY
TIPS
To Counter
Wandering
Incidents
Summertime
Smarts
Family Fun That
Won’t Bust
Your Budget
J U N E -J U LY 2013
D I S P L AY U N T I L J U LY 1, 2 013
Each edition of Autism File covers a diverse range
of issues critical to ASD families:
SUMMER
SPECIAL
Autism
Friendly
Fun
Reach a highly targeted and receptive audience, who are deeply engaged
with the content because it covers issues that uniquely matter to them.
Contact Kim Linderman, Advertising Director
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18
SENSORY SMARTS
Sensory Smart Art
10 Ways to Help Artists Handle Sensory Issues…
BY LINDSEY BIEL, OTR / L
W
hether kids, teens or adults
on the autism spectrum
are serious artists or simply having fun with crafts, it’s essential
to address any sensory challenges.
Here are some ideas:
1. Create a workspace conducive
to focus and creativity. Provide
a comfortable chair and tabletop
easel or slant board to reduce
neck strain. If the person needs to
move in order to remain attentive,
consider an inflatable seat cushion
such as the Movin’ Sit or Disc o’
Sit, a ball chair, or Hokki stool.
Some people prefer to work
standing up. In this case, set up
a freestanding easel, raise the
height of the work surface, or
consider a stand-up desk.
2. Remove visual clutter to avoid
distractions, using opaque storage
bins for art supplies, toys, and
so on. Turn off glaring overhead
lights and use a task lamp or
floor lamp at eye level with a fullspectrum or incandescent bulb. If
fluorescents (which many people
can see and hear flicker) are
unavoidable, add a light diffuser
such as Classroom Light Filters.
3. Provide a soft, oversized shirt
or cotton chef’s apron instead of
a plastic smock which may be
distressing because of the fabric
texture or scratchy neck closures.
4. Play music or use a white noise
machine or CD if that helps with
focus. If it’s a noisy room and the
person needs quiet, provide noisereducing headphones or ear plugs.
LINDSEY
LIND
LI
NDSE
SEYY B
BIEL,
IEL, M.A., OTR/L...
5. If the person dislikes getting
messy, have a damp cloth nearby
for wiping hands, eliminating the
need to get up and wash hands
frequently. Once people find
pleasure in what they’re doing,
they’re usually more willing to deal
with the sensory aspects. Provide
alternates to enable participation.
You can certainly provide gloves
and a long-handled paintbrush or
glue sticks instead of liquid glue.
6. Art media such as paint, markers,
glue, and clay usually have a
strong smell, so make sure you
have good ventilation. Generally,
you should open a window or use
a fan. Avoid invalidating a sensitive
person by saying, “It doesn’t smell.”
It does. Everything (and everyone)
smells like something.
7. Even if the label says the item is
nontoxic, it may still be toxic to
that person’s nervous system. If
the student cannot tolerate the smell
of regular markers or tempera paint,
try alternatives such as Mr. Sketch
scented markers or liquid watercolor
paint. Colored pencils and crayons
may be best tolerated.
8. If a student refuses to touch
play dough or regular clay, try
unscented gluten-free Wonder
Dough; scented, gluten-free Aroma
Dough; Eco-Dough for chemically
sensitive kids; or low-residue
Crayola Model Magic. Older kids
might enjoy using Sculpey which
hardens when baked to make beads
and other objects.
9. Consider how much structure the
person needs. Does he become
...a pediatric occupational therapist based in Manhattan, where she evaluates
and treats children, adolescents, and young adults with sensory processing
issues, developmental delays, autism, and other developmental challenges.
Lindsey is coauthor of Raising a Sensory Smart Child, with a foreword by Temple
Grandin, and author of Sensory Processing Challenges: Effective Clinical Work with
Kids and Teens. She is also co-creator of the Sensory Processing Master Class DVD
program. She is a popular speaker, teaching workshops to parents, therapists,
doctors, and others on practical solutions for developmental challenges and sensory strategies
at home, school, and in the community. _
anxious and disorganized when
given art supplies and encouraged
to explore freely? If so, you may
want to use a kit with step-by-step
instructions and a picture of the
finished product. Kits such as Alex’s
Color By Markers and My Clay
Art, Paint by Numbers from FaberCastell, Royal & Langnickel and
others plus foam craft kits from your
local crafts store are just a few of the
pre-packaged activities that can be
explored. Sequenced drawing can
help a person to stay organized and
get a satisfying result. Books such as
Usbornes’s I Can Draw Animals and
Ed Emberley’s books such as Draw
A World can help.
10. Engage in sensory-rich activities
that set the person up for success.
A person may benefit from a
preparatory hand massage; waking
up fingers, wrists, and arms by
using squeeze balls and hand
exercisers such as the Eggsercizer
or Pediatools monkey. It may also
help to engage in movement and
body awareness activities such as
jumping jacks, bouncing on a ball,
doing wall push-ups, chewing gum
(Glee Gum is gluten-free), drinking
thick liquids through a straw, or
whatever sensory strategies work for
that person at other times.
For more sensory strategies, please
read Raising a Sensory Smart Child and
visit www.sensorysmarts.com. _
FIND OUT MORE
` Stand-up desk www.Worthingtondirect.com
` Classroom light filters
www.Educationalinsights.com
` Inflatable seat cushions, ball chair, Hokki stool
www.Achievement-products.com
` Online Sculpey projects www.Sculpey.com
` Monkey hand exerciser and other hands
strengtheners www.Pediatools.com
You can find most other items mentioned on Amazon
and many on the sensorysmarts.com web site.
GIVE AUTISM A CHANCE 19
Meet
Edward Tucker
Creative young man with autism
gains work experience in a caring
environment...
T
wenty-seven-year-old Edward
Tucker works at Polly’s Place,
The Autism Trust’s flagship social enterprise shop and center in Ascot, UK. His chipper attitude brightens
the atmosphere and his photography
skills are an absolute asset to
the online store.
“I take photos
of new products
going on to the
P o l l y ’s P l a c e _PART OF THE TEAM—Edward’s attention to detail and sunny disposiwe b s i te ,” s a i d tion make him an integral member of the Polly’s Place team.
Edward. He uses
creative angles and works with natural pictures are instrumental to the online
sunlight to capture some incredible store and help generate interest and
images that show Polly’s Place prod- sales from all over the world.
ucts in the best possible way. His
With a huge interest in trains, he’s
also started collecting and displaying
_PICTURE PERFECT—Skills with lighting and the pictures he takes from the bridge
angles allow Edward to provide the best pos- down the street from the shop. He’s
memorized the train schedules and
sible showcasing of products.
uses the bridge as a vantage point to
collect images of the trains that pass
by below. Recently, he’s started a dis-
“We just love having
him around. He’s part
of the Polly’s Place team
and like family to us...”
play of his best pictures to share with
the many other train enthusiasts who
frequent The Autism Trust.
“We just love having him around.
He’s part of the Polly’s Place team and
like family to us,” said Mo Wilson,
the manager of Polly’s Place.
The most important thing to
Edward is that The Autism Trust and
Polly’s Place provide him with a job
that he enjoys in a supportive and
caring environment.
Visit the online store to see Edward’s
photographs www.theautismtrust.com. _
Wired Up For Sound
One person’s noise is another’s music…
BY SAM RUBIN
W
hen I go up and down in
an elevator, I can distinguish the note (pitch) the
motor hums in. Bulldozers, fans, leaf
blowers—you name it. Everything
is vibrating at various pitch frequencies. And the world is a symphony of
sound, if you can allow machines to
sing to you.
Of course, when I’m up close to
a really loud or sudden sound, my
adrenaline goes off. But I think that
this happens to anyone.
I have “perfect pitch” which is a genetic ability for being able to instantly
identify pitch; and it has the added benefit of pitch memory which means that
when I hear a piece of music, my mind
instantly tape records it and I can replicate it at will. For this, I have been hired
as the “harmonies captain” for various
theatre productions.
The Autism Media Channel was
created to provide help and support
to individuals with autism and their
families. We work with professionals
from around the globe to present
practical strategies for all the challenges autism families face on a
daily basis. From designing a supplement protocol to toilet training,
and from creating viable workplaces for adults with autism
to finding support for siblings,
we gather the best possible
input from physicians, therapists, nutritionists and more to
present on our website.
Visit us at
www.autismmediachannel.com
for more information
ED RUBIN
20 THE WAY I SEE IT
The downside of this ability is
that once the music is in my mental
database, my eyes shut off, making
it difficult to sustain reading music.
It’s not that I don’t have the ability
to decode musical notes or notation.
I do. But I simply stop looking at it
because of the dominance of my auditory system.
I’ve noticed that when I read, it’s
easier if I hear the words. I prefer
to either read out loud to myself or
follow along with my eyes with an
audio book or a computer-generated
voice reading the words. Some people
would characterize this as a crutch,
but I think it’s better to know your
strengths and weaknesses and work
with them.
The composer, John Cage, capitalized on everyday sounds to make
his compositions. For one concert in
particular, he piped the traffic from
outside the symphony hall into it,
exposing the audience to sounds they
would normally tune out as “not
music.” About traffic, he said, “If you
listen to Beethoven or Mozart, they
are always the same. But, traffic is
always different.”
The way I see it, we live within a
symphonic fishbowl of mechanistic
auditory vibrations that actually have
musical pitch—if only you tune your
ears to hear the music of it. _
SAM
SA
M ETHAN
ETH
THAN
AN RU
RUBI
RUBIN...
…is a 20-year-old actor,
filmmaker, writer and
vocalist. He is the author
of And...Action! My TAKE on
Autism (and Life), available
on Kindle, and plays the
character Rocket in “The
Rocket Family Chronicles” (The Autism Channel).
His new book, Heretic, is due out this Spring and
he is in pre-production on a new film. He lives
with his family in Oakland, California. _
THERAPY, BEHAVIOR, AND LIFE SKILLS 21
Bath Time
Blues?
Top 10 Ways to Teach Meltdown-Free Hygiene…
BY JENNIFER LINGLE
H
JJENNIFER
ENN
NNIF
IFEER LINGLE,
LING
LI
NGLE M.ED. ...
What if there was a better way?
What if you could get your child or
adolescent to not only take care of his
body, but also to understand why hygiene is so important?
Below are some tried-and-proven
tips that focus on helping your child
take care of his body without him—
or you—melting down.
`Remember: A little
patience goes a long
way. I k now that
:// W W
W.S X
C .H U
/
some d ay s your
cup is overflowing
with patience and
on others you
are at your wits’
end; this is totally
understandable. On
those days when you
are ready to crawl
right back into bed,
I encourage you to try
this: close your eyes, take deep
breaths, and count to ten. Once you
reach ten, count backwards down to
one. Try this at least three times. I like
to envision the dots on a domino as I
am counting. Having a focal point really
helps me relax. After you count back
and forth three times, say to yourself (or
aloud), I can do this. Focus on the baby
steps. Each step you and your child take
is one step closer to the end result…
teaching your child the importance of
being clean.
Now that you are nice and calm,
remember that your child learns by
repetition. You may have to practice
the following strategies a minimum
HT TP
ow often do you hear the
words, “I already washed my
hands!” or “I don’t want to
take a shower!” Many families who
have a child, adolescent, or young
adult on the autism spectrum often
find themselves frustrated when
it comes to cleanliness issues.
Whether you are trying to
get your child to wash
his hands, change
h i s clot he s, or
merely wipe his
face, hygiene is
a n i mp or t a n t
part of ever yb o dy ’s d a i ly
routine.
Hyg iene
challenges tend to
become more difficult as your child
gets older as do the
consequences for him
not being clean. It can be
exhausting arguing with your child
day in and day out. Perhaps you have
given up on enforcing a daily shower;
after all, getting your child to wear
deodorant, change his shirt, and put
on clean socks is just a battle not
worth fighting every day. Or is it?
Let’s face it, you have gotten used
to picking your battles; otherwise you
would never get out the door.
…is the founder and president of the International Autism Association for
Families and Educators. She has been a special education teacher since 1999 and
the founder and director of Autism Consulting and Training, Inc. since 2006.
Jennifer was instrumental in developing in-home educational programs for
children affected by autism throughout the United States and continues to
provide intensive parent support and training to families. She holds her Master’s
Degree in Special Education and her Autism Endorsement. Jennifer is a sought
after speaker and travels internationally to set up classrooms to meet the diverse needs of her
clients. In addition, she creates multi-sensory environments in schools and summer camps
throughout the United States to assist children with sensory challenges. Jennifer is dedicated to
improving the quality of life for families and educators._
22
THERAPY, BEHAVIOR, AND LIFE SKILLS
of 21 times before the techniques become habitual.
know, children on the autism spectrum
are typically visual learners; they usually
learn by seeing and not necessarily
by hearing. Children with autism
sometimes experience a breakdown
in understanding the importance of
cleanliness. They do not automatically
understand that if they don’t shower,
germs may make them sick, and when
they smell bad, it is difficult to make
friends. Because these outcomes may
not matter to them, it is important to
teach them the importance of good
hygiene, and to care about being clean.
You can explain the importance
of hygiene to your child by using
a picture story. Describe how others feel and what others may think
when someone does not take a bath
or shower. Be clear about how other
kids may not want to hang out with
him if he smells bad. This thought
process may not come naturally to
your child, so using something motivating, like your child’s desire to
have friends, if he cares about this,
may encourage him to take a bath
or shower.
You can use picture stories to explain to your child things like: what
draws people to one another, why
does he need to be clean, what does
hygiene mean, how can hygiene help
him make friends, what does hygiene
have to do with getting a job, etc.
Create stories using actual photographs to explain complex subjects.
Use the real names of body parts so
as not to confuse your child. Try to
be firm, literal, and to the point when
explaining the importance of good
hygiene to your child.
` Video modeling is a great way to
assist your child with complex steps.
Recording actions on camera and
playing them back for your child
can assist him in conceptualizing
your requests. You can role-play in
the video or try guiding your child
HT TP://WWW.SXC.HU/
` Use picture stories to explain why
cleanliness is important. As you may
step-by-step through a task while
recording it. When your child watches
the video, he can better understand,
visually, what it is that he needs to do.
Video modeling is great for teaching
self-help skills such as brushing
teeth, getting dressed, cleaning
hands, wiping the mouth, cleaning
food properly, washing clothes, and
wearing deodorant.
` Visual Task Strips are wonderful
tools for helping to visually break
down tasks into individual steps. For
example, rather than putting up a
sign next to the toilet that says, don’t
forget to wipe, try placing specific
visual directions of how to do so.
A visual for wiping may include:
pull off 6 pieces of toilet paper, fold
the paper in half, wipe your bottom
from front to back, if paper is clean
pull up pants and flush the toilet, if
paper is dirty then pull off 6 pieces
of toilet paper and start again. These
steps may seem obvious to you, but
to a child who is a visual learner,
he may need constant reminders to
stay on task.
Task strips are great for breaking
down the steps involved in a bath or
shower too. Include turning on the
water, wetting the whole body, putting soap on a washcloth or sponge,
etc. If your child tends to forget to
wash certain parts of his body, you
can include this in the task strip
also. Write down every part of the
body that you want him to wash.
Laminate the task strip and hang it
in the shower.
` Make hygiene part of your child’s
daily routine. Taking a bath, taking
a shower, brushing teeth, putting on
clean clothes, wiping, and washing
hands are not choices, but musts.
Just like going to bed and eating
a re not opt ion a l but e s s ent i a l,
good hygiene should be a part of
your child’s schedule every day. If
your child uses a visual schedule,
start placing hygiene items in his
routine throughout the day (if he
doesn’t use a schedule, now is a
great time to start). Children on the
autism spectrum thrive on structure,
routine, and repetition; set your child
up for success by respecting these
learning styles.
` Respect your child’s sensory needs.
I have yet to meet a child on the
autism spectrum who does not have
challenges with sensory overwhelm
or under whelm. It’s essential to
recognize that the reason your child
may have difficulties getting his head
wet or brushing his teeth may be
because he is so sensitive to water (or
THERAPY, BEHAVIOR, AND LIFE SKILLS 23
anything for that matter) touching his
head and hands.
Even changing his clothes may
be overwhelming because of sensory
integration challenges. He may be
most comfortable in a certain shirt
because he has broken it in and it is
soft and comfy. He may not like the
smell of the fabric softener or detergent you use, and this may deter him
from wanting to wear new clothes.
Showering may be challenging
because perhaps the shampoo or
soap has a strong scent. Do you have
air freshener in your bathroom at
home? This, too, can cause some
hardships in the bathroom.
Play detective, respect your child’s
sensory needs, and make accommodations when necessary. If your
child seems to be in pain when he is
brushing his teeth or hair, be sure to
speak with an Occupational Therapist about ways she can help you
through this process.
` Use music to promote a positive
experience. Play your child’s favorite
music in the shower, while getting
dressed, or even when he is using
the bathroom. Try pairing a stressful
task with something that your child
enjoys; this will help him make new
associations and can also distract
him from the stressful par ts of
activities.
You can also try playing your
child’s favorite video during a hygiene task to help distract him. For
example, while he is brushing his
teeth, play a two-minute video. When
the video is complete, he can stop
brushing his teeth.
Also, try creating a CD that he
can listen to while in the bathroom
for the length of his bath or shower.
When the CD is finished, it is time
to get out.
` Use a timer for transitions and
to prolong hygiene tasks. Because
children on the autism spectrum tend
to have challenges with executive
functioning skills, your child may
have a poor concept of time. He may
feel as if one minute is 20 minutes or
vice versa.
To assist your child with understanding that he doesn’t need (nor
is he allowed) to be in the shower
for two hours at a time, use a timer
to assist him. Timers are great tools
to assist your child in transitioning
from one task to another task and
to help him gain a better awareness
of time.
` Use reinforcers to promote positive
behavior. Place a picture of a motivator
or reward after a hygiene symbol in
your child’s daily schedule. Reward
appropriate behavior with a desired
activity or item. By providing your
child with positive feedback, you are
increasing the chances that the desired
behavior will occur again.
Try using a chart with stars or
stickers. Clearly define the requirements for receiving a star or sticker.
For example, if your child needs to
wash his body with soap, write, “Wash
your whole body with soap to earn 1
sticker.” Make an agreement with your
child that if he gets seven stickers he
will earn a reward. Be sure to use a
very exciting reward as his motivator.
` Make it fun! Like most people in
life, your child wants to have fun.
Whenever possible, take the stress out
of hygiene by being creative. Try to
turn challenging times into fun games.
Sing songs, get silly, smile, laugh,
dance, and embrace your inner child
to encourage a positive experience for
both you and your child. _
FIND OUT MORE
` For more strategies on how to improve
the quality of life for your child on
the autism spectrum, please go to
www.AutismConsultingandTraining.com
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24
NAA
A CONFERENCE
CONFERENCE
A Pure Vision
A unique art studio in New York City provides vocational
and social opportunities for adults with autism…
B Y PA M R O G E R S A N D S O P H I A C O S M A D O P O L O U S
A
utism is among the most pervasive and fastest-growing developmental disabilities of our time. As children
on the spectrum age out of school and become adults,
they require specialized programs that allow them to focus
on their own specific interests and talents. While much of
the funding for autism tackles early intervention for children
and general research, there is a lack of specific funding for
these adults. The Shield Institute, a non-profit organization
providing services for people with developmental disabilities, recognized the urgent need for age appropriate and innovative programs in New York City. In 2002, under the
guidance of Executive Director Dr. Susan Provenzano, Pure
Vision Arts was created.
FILLING A VOID
Pure Vision Arts (PVA) is Manhattan’s first and only
art studio and gallery space for adults with autism and
other developmental disabilities. The model is based on
` THE SMILE SAYS IT ALL—Oscar Azmitia painting in the art studio.
Oakland, California’s “Creative Growth” program which
opened in 1974 as the nation’s first independent visual
art center for people with neurodevelopmental conditions. The creation of PVA in New York City quickly
ART AND CREATIVITY 25
INDIVIDUALITY IS KEY—(Left) Susan Brown’s acrylic “Breakfast Table”
on cardboard. (Right) Various vehicle sculptures made out of paper and
mixed media by Chase Ferguson.
filled a void for self-taught artists who, historically, had
limited access to mainstream arts institutions. Focusing
on ability rather than disability, PVA strives to build
public awareness of its artists’ important creative contributions. The small and committed staff provides studio
space, high quality art materials, support, guidance
and opportunities for exhibiting and selling the artists’
work. The Director, Dr. Pamala Rogers, explains, “PVA’s
philosophy begins with the belief that the arts are not
a luxury, but a necessity in a civilized society, and that
all people regardless of their ability should have the
opportunity to express themselves.”
Located in the heart of New York City’s Chelsea
gallery district, PVA is a comfortable 2,000 square foot
sunny loft space. Large-scale cardboard traffic lights and
parking meters line the floors, art hangs floor-to-ceiling
and rows of handmade paper vehicles cover each windowsill. Carts of acrylic paint, pastels, colored pencils,
paper and canvasses are located in the center of the
room. On any given day, up to twenty-five artists are
intently making art, having discussions and laughing
with their peers.
Modeled on the person-centered approach, the artists of PVA work independently and use the media of
their choice. Some draw, paint on canvas or wood, use
textiles or build sculptures. Others take photographs
in the community, write and illustrate original stories
Meet the artists
To fully appreciate the workings of the
PVA studio, it helps to be introduced
to some of the artists. Susan Brown is
one of PVA’s most prolific artists, and
has been drawing since she was a small
child and was diagnosed with autism at
the age of four. As an adult, she worked
as a dishwasher at Friendly’s Restaurant
where she used found cardboard to
make her signature grid-like paintings.
Now in her tenth year at Pure Vision Arts,
Susan Brown has become a fixture at the
studio. Over the years, she has created a
vast collection of paintings that reflect
her own personal experiences.
Influenced by her childhood memories
of growing up on Long Island, Susan’s
work most commonly depicts images
of transportation, landscapes and her
favorite subject: her mother. When asked
about paintings of her mother, Susan
can list the exact date she wore each
dress or blouse and the history of the
garment represented. Susan shares her
father’s great love of music and grew up
in a home where the record player was
always on. Each day she brings in a collection of CDs to play in the studio. Her
style is lyrical and improvisational like the
jazz she listens to while painting.
Susan has a long exhibition history. In
addition to PVAs’ exhibitions, Susan’s
work has been shown at the Outsider
Art Fairs in New York City, the Hamptons
and in Vienna, at the Ricco Maresca
Gallery, the United Nations, the PS122
Gallery, the Olof Gallery in the Netherlands, the City Museum in Washington,
DC, and the Museum of American Folk
Art amongst many others. Her work has
been written about in publications such
as Out of Art, Envision Folk Art Magazine
and in Debra Hosseini’s The Art of Autism:
Shifting Perceptions. Susan’s landscape
paintings were included in Jill Mullin’s
first volume of Drawing Autism, and the
second volume features her art on the
cover. The art of Susan Brown is celebrated by many and is also included in
various private collections.
Oscar Azmitia began attending PVA in
2006 as a full time participant. He was
born in Manhattan in 1978 and home
schooled by his mother while living in
Brooklyn and Queens. Since attending
PVA, Oscar has created many paintings
that depict his knowledge of Biblical
stories. With an extremely close attention to detail, Oscar is currently working
on a series of miniature enamel paint-
ings on coins. Fascinated by antiquated
architecture, Oscar also paints buildings and landscapes of New York City
on found items such as vintage record
albums and New York City Subway
Metrocards. This month, The McCarton
Foundation will honor Oscar with the
Genius of Autism award to acknowledge his artistic accomplishments.
Chase Ferguson is another adult on
the spectrum who attends PVA daily. A
multi-faceted artist, Chase draws, paints,
sculpts, and works in mixed media. From
an early age, Chase has been fascinated
with transportation, especially trains.
As a child, Chase loved to build trains
with toy building blocks and make sets
out of paper. Over the years he has
perfected his unique technique and
created hundreds of trains, cars, buses,
parking meters, and traffic lights out
of recycled paper and cardboard. His
work will be included in an upcoming
exhibition at Art Enables in Washington D.C. entitled Outsider Art Inside the
Beltway. In January of 2014, Pure Vision
Arts will have an exhibition at The New
York Transit Museum in Brooklyn including transportation inspired art where
Chase’s work will be featured.
26
ART AND CREATIVITY
a A SUPPORTIVE ATMOSPHERE—PVA provides opportunities for both creative and social growth.
or make animated videos. The studio is a place
where artists are free to
develop their own “pure
vision” from within and
not from formal instruction or copy ing other
source material. The PVA
studio provides an environment that facilitates
socialization, the sharing
of ideas and peer mentoring while working in
a supportive atmosphere.
Regular guided tours to
the museum and group
discussions, where the
artists had opportunities
to di scuss t heir process, accompanied the
lessons.
The Whitney Museum also provided a four
week workshop on photographs and their role
in inspiring paintings,
drawings and sculpture.
PVA artists were given
digital cameras which
VIABLE VOCATIONS
they used at the muP VA a l so br i ngs v i s seum and on field trips
ibility to the artists and
in the community. The
educates the public on
final workshop culmithe impor tant role of
nated in an exhibition in
art in the autism coma Whitney studio as well
munity. Collaborating
as a final critique.
with other organizations
The art studio views
a OUTSIDE THE BOX— Cardboard parking meters made by
i s e x t r e m e l y i mp ormaking art as a viable
Chase Ferguson.
tant in achieving these
vocation and the studio
goals. New York City’s
represents each artist by
Museum of Modern Art facilitated an eight week sculp- scouting opportunities to exhibit and sell his or her
ture workshop in the studio, where a teaching artist work. While some artists continue to build their portfointroduced techniques in plaster-of-Paris, wire and clay. lios, many make commissioned pieces or create work for
SUMM ART AND CREATIVITY 27
b
The studio is a place where artists
are free to develop their own ‘pure
vision’ from within and not from
formal instruction or copying other
source material.
a
POSSIBILITIES ABOUND— (Left) Oscar Azmitia’s enamel paintings
on New York City MetroCards (Above) Susan Brown’s iconic polka dot
“Her Mother” painting on cardboard.
future art exhibitions. It is each artist’s decision to sell
his or her art, and signed consents must be obtained
prior to any sale. Once a work is purchased, the artists receive a fifty percent commission; the other fifty
percent goes back to the studio to cover the cost of art
materials, framing and exhibition expenses.
Ultimately, Pure Vision Arts is about community
building, creating social change, and celebrating neurodiversity by promoting and legitimizing the cultural
contributions of artists with autism. Many of the artists
have led amazing lives and the sheer power and uniqueness of their expression add greatly to our humanity.
The studio strives to advance society by breaking down
negative misperceptions and stereotypes about people
on the spectrum. _
FIND OUT MORE
` Pure Vision Arts website www.purevisionarts.org
` Facebook page www.facebook.com/PureVisionArts
` To schedule a visit, call PVA at (212) 366-4263
28
DIY AUTISM THERAPY
Do It Yourself!
Budget-friendly, at-home programs to
increase functional communication in children with autism…
BY ALIX STRICKLAND
T
PARENTS AS THERAPISTS
As the parent of a child with autism, you are constantly searching
to stimulate and teach your child as
well as learning to communicate successfully with him. Sometimes the
interaction you crave with your child
seems out of reach. It is essential to
have a “magic box of tricks”—activities that are fun and challenging
enough to increase your child’s functional communication.
Given proper coaching, parents
can be their children’s best therapists. There are many benefits to
working directly with your child.
Working together to accomplish
goals builds a very strong family
bond. Creating together builds the
bond not only between parents and
the child with ASD, but with typically developing siblings as well. In
addition, creating your own materials for your child’s home program
is budget-friendly and
eco-friendly.
CREATE THE
ENVIRONMENT
Many people w ith
Autism Spectr um
Disorders have sensory
integration difficulties
making the processing
of ever yday sen sor y
infor mation such as
s ou n d s, s i g h t s a n d
smells a challenge.
Before sitting down
to work w ith your
child, make sure that
your space i s cle a n
and free of clutter. Soft
lights and classical music provide an excellent
background for working with a child on the
autism spectrum. Make sure you
present one activity at a time in an
environment that is somewhat neutral to minimize distractions during
your work activity.
BIGSTOCK
he number of
children with autism in the US has
risen from one in 5000
diagnosed in 1975 to
one in 250 in 2001, to
one in 54 boys and one
in 252 girls in 2013.
The numbers have increased so rapidly that
professionals are rushing to learn what they
need to know to offer
appropr i ate suppor t
and help to families
raising these children.
Even with new professionals graduating in
related fields each year,
the demand for autism
services far outweighs
the amount of available
autism services.
b
Re-using materials
is eco-friendly and
affordable. With
minimal resources, you
can create some pretty
fabulous learning tools.
a
ISTOCK
BUILD YOUR OWN DIY
THERAPY TOOL-KIT
You have a wealth of available home
program materials sitting around
your house at this very moment. Reusing materials is eco-friendly and
affordable. With minimal resources,
you can create some pretty fabulous
learning tools.
Below you will see listed the materials required to create all of the
featured educational materials for
your child. Warning: once you realize
all of the fabulous learning opportunities you can create for your child
with the simplest of household materials, you will be hesitant to ever
throw away another toilet paper roll
or egg carton again!
DIY AUTISM THERAPY 29
A visual schedule
with a twist.
Materials needed:
` Straws
` Laminating machine
` Laminating sheets
` Plastic cup
` Tape
At the beginning of your home
program, you want to get your child
used to sitting at the table with you,
following simple instructions and taking turns. A visual schedule can be very
helpful for children of different ages
and skill levels on the autism spectrum.
To get started, take photos of your
child’s favorite activities and snacks.
Print them out in a small format.
Laminate them. When done cut each
individual item out and attach with
tape to straws. Take turns choosing
a straw with your child. One at a
time, you or your child will choose a
straw and then complete the activity
featured in the photo attached to the
straw. As an added bonus, children
who are reinforced by a drink of any
kind (juice, sparkling water) could
have a sip of their favorite drink after
successfully completing the activity.
You can select activities and foods
of your choice for this project. Here,
the straws feature photos of a juice
box, cars, a wooden bead toy, the garden (to go outside), a musical toy, a
board game and a Dr. Seuss book.
A friendly
dinosaur token
system.
Materials:
` Clothespins
` Green construction paper
` Markers
` Laminating machine
` Laminating sheets
` Scissors
` Velcro
` Photos of favorite
activities and foods
Draw a dinosaur of your
choice on the green construction
paper. You can ask your child to
color in the dinosaur with markers.
Laminate your dinosaur and cut it
out. Attach a piece of velcro in the
middle of your dinosaur. Prepare
your pictures by printing and laminating them and then cutting them
out. Select the number of clothespins
you will
use w ith
your child.
Each clothespin
will correspond to one activity the
child must complete before getting
the re-enforcer featured in the photo. Each time the child completes
an activity, remove a clothespin.
When all of the clothespins have
been removed (all of the activities
have been completed), deliver the
promised item as a re-enforcer for
your child’s hard work.
30
DIY AUTISM THERAPY
USE YOUR DIY MATERIALS
TO WORK ON A VARIETY OF
SKILL DOMAINS.
By creating these materials with your
child, you are engaging him in a social
activity that creates a stronger bond with
you, decreases the child’s stress by occupying him with a fun and engaging
activity, increases his fine motor skills
and increases his focus and ability to
concentrate. You will use each of your
home-made educational materials to
increase your child’s functional communication with you. If you have other
children in your family, you can include
them in these projects to increase sibling
interaction and communication as well.
Each material that you prepare can
be used in several different ways to
help increase your child’s functional
communication. As your child progresses in his skills, you can adapt your
home-made learning materials to meet
his needs and help him to progress to
the next skill level. On the following
a BIT BY BIT— Applied behavior specialist Alix Strickland incorporates do-it-yourself tools
for her clients at the Le Chemin ABA VB Learning Center in Paris, France.
page, you will learn how to use each
material in two different ways depending on your child’s skill level. For our
purposes here, a “Beginning Learner”
is a child who is not yet fluently vocal
who may be beginning to use sounds
and words to request what he wants.
An “Intermediate Learner” is a child
who is using words to ask and answer
questions and share information.
THERAPY, BEHAVIOR, AND LIFE SKILLS 31
THREE HOMEMADE EDUCATIONAL
MATERIALS TO CREATE WITH YOUR CHILD
RICE TREASURE BOXES
STORY STONES
Materials needed:
Materials needed:
`
`
`
`
`
`
`
`
`
Clear BPA-free container
Rice
Small figurines / items of your choice
Hot glue gun
Fill your container with rice and small,
preferred items collected from around your
home. Put the small items in the box. Using the
hot glue gun, glue the container shut.
Early Learner: Have your child shake the box. Take turns labeling
the items you see as a game.
Skills taught: controlling and coordinating hands (to shake container), labeling (known as a “tact”), taking turns.
Intermediate Learner: Have your child shake the box. Take turns
asking each other to find an item based on certain characteristics,
for example, “Show me the red one” or “Show me the bird”.
Skills taught: controlling and coordinating hands (to shake container),
labeling, taking turns, identification by characteristics.
FARM STORY BASKET
Salt dough
Draw string sachet / bag
Paper, computer, printer
Images (your choice)
Laminating sheets and
laminator
Salt dough recipe:
` ½ cup salt
` ½ cup water
` 1 cup GF flour
Directions: mix the 1 cup of flour and ½ cup of salt in a
bowl. Add the wtaer slowly until you have a dry dough. You
may not need to use all of the water. If your dough is too
sticky, add more flour. Make small round and somewhat
flattened “stones” from the salt dough. Put in the oven on
low heat for 3 hours. While your story stones are baking, print,
laminate and cut out your images. When your story stones
are hardened and cooled, use a clear decoupage glue to
attach them to your story stones. Wait to dry before using.
Store in a drawstring bag.
I prefer using salt dough stones rather than real stones because of the added fun of making the salt dough with your
child. These are also softer and lighter than real stones which
makes them less dangerous just in case they get thrown.
Materials needed:
`
`
`
`
`
`
Basket
Farm animal figurines
Farm animal puppet
Farm animal sounds CD
Scene mat (you can draw this or buy one as shown)
Play tractor
Your box will be organized by theme. You can create a new box
based on any theme that you choose. This is a story box based on a
farm animal theme.
Early Learners: Hold the box out of the child’s reach. Guide the child
to point to, sign for, exchange a picture for, or ask for each item in the
box depending on how your child is requesting at this time.
Skills taught: eye contact, pointing, requesting (known as a
“mand”), social interaction.
Intermediate Learners: Have the child request each item in the
story box from you. Take turns asking and answering questions
about the items in your story box. This activity has several variations. You can create a realistic or imaginary story using the items in
your box depending on the current verbal skill level of your child.
Skills taught: eye contact, pointing, requesting, social interaction,
asking and answering questions, taking turns, creating a realistic or
imaginary story with various characters.
Early Learner: Take turns picking a stone, holding it up and
saying what it is.
Skills taught: following instructions, sensory play, eye contact, focus, labeling, taking turns.
Intermediate Learner: Take turns picking a stone from the
bag and asking questions about the images on the stones,
such as “What color is the dog?”, “How many scoops of ice
cream are on the cone?” or “How is the boy feeling?” These
questions are different levels of difficulty. Your activity must
be adapted to your child’s level.
Skills taught: following instructions, sensory play, eye
contact, focus, labeling, taking turns, asking and answering
questions (may include colors, WH-questions, etc.).
The possibilities for DIY, budget and eco-friendly educational
materials are endless. Making
these at home with
your child creates
unlimited opportunities to guide
your child’s
functional
communication
while having fun. _
32
EDUCATION SPECIAL
Time for
a Change
It’s All in the Details —
A group home designed by
Purple Cherry Architects uses
pod structures with linking sitting
rooms to create a secure outdoor
courtyard and additional interior living
areas for socialization or de-escalation.
When and How to Find A New Home for Your ASD Child…
B Y C H R I S T I N A A DA M S , M FA
I
s your child scaring the heck out of you, refusing directions or getting too big to handle? Are you ill, worn out,
or even feeling suicidal? Is everything okay but your
adult child wants his own place? These are normal reasons
for seeking a new home for your spectrum child. While a
special sadness can accompany this task, it’s absolutely
true that positive growth for parent and child can occur.
If the idea of moving your child away from home makes
you cry or feel guilty, here’s one reason why. The negative
stigma associated with placing a child in a residence, i.e.,
“putting him away,” comes from a time when people with
disabilities weren’t seen as fully human and had few legal
protections. Sadly, the Civil Rights era of the United States
failed to include persons with disabilities, so the change
in their rights status came later, after laws were passed in
response to media exposes of inhumane residential institutions. These shocking abuses left a permanent scar on the
image of out-of-home care.
But in many Western countries, today’s disabled person
is assigned a government caseworker and the right to help
determine his or her own care, so they’re entitled to a good
residential setting. Some do currently exist, although we
face a lack of quality homes to shelter the upcoming tidal
wave of ASD kids, many of whom are very impaired, but
others who are sociable, highly functional and need work
and college. The needs of people on these opposite ends
of the spectrum, from Asperger’s to profoundly autistic,
remain largely unaddressed in group homes designed for
calmer, more intellectually disabled people. Still, when a
family is in crisis, it must take what it can get. That’s why
investigating placement or housing for your ASD child is
smart even when you don’t think you’ll need it—but especially when it seems like you might.
“Placement” is a term often used for kids who need a
more intensive or independent environment than home
can offer. While placement is emotionally and practically
challenging, it’s governed by similar but different rules for
adults with disabilities. Your child’s developmental agency
caseworker can guide you through them.
HOUSING FOR CHILDREN
Some children are very difficult from birth. There are young
children who rarely sleep, or are so aggressive they send
adult caregivers or other kids to the hospital. Early intervention can help, but their issues are often well-documented
and the idea of placement becomes apparent early. This may
also hold true for medically complex ASD kids who can’t
use the toilet or communicate, or have seizures and other
AGES & STAGES 33
conditions. As these kids grow, their size may enhance the need short-term (three months or less) emergency care due
difficulties of caring for them.
to aggression, self-harm or other intense needs.
In other ASD kids, troubling issues can emerge from
As you climb the ladder of choices, residential or psyages 11-14, even in successful Asperger-type kids who are chiatric schools are another rung. School districts might
“done” with autism intervention. “They internally start fund placement for highly disruptive, traumatized, and
to ‘rumble’ and are more likely to explode at home,” ex- medically or psychiatrically complex students if their learnplains Nancy Donnelly, M. Ed, executive director of New ing is being impeded—and in case of wrong-doing by the
Vista School and chair of the Orange County Autism Task school, districts sometimes offer them in a settlement deal.
Force. “They start to get bullied more; people make them They can cost $10K or more per month, so seek advice
know they are different. They get angry and depressed. from a special education attorney. If your child is throwing
Suicide language comes up: ‘I’m gonna kill myself.’ It re- chairs, sent home repeatedly, eloping, or has been injured
ally means, ‘I have hit a wall and don’t know what to do, or caused injury, he might qualify for funding.
so I use society’s language to tell you how I feel.’” Families
If you want your child to move out, stay close to home
are sometimes destroyed by centerand attend a local school, a small
ing their entire lives around a child
family group home placement is the
who needs intensive care and supervifirst-line choice (although every case
sion, wrecks the house, causes work
is individually based and exceptions
loss or law enforcement problems,
to the rules are always possible). The
…everyone gets to live
or is simply so sad he needs a fresh
child must have qualifying condistart. Parents find this a “wrenching
and display certain deficits or
a reasonable, productive tions
decision because they feel they are
behaviors (which also determine the
abandoning the child,” says Donnelly.
type of group home or care he needs),
life and the child gets
“But that’s not the case. Now everyone
but it’s actually surprising how easgets to live a reasonable, productive
ily many kids with ASD meet these
life and the child gets the opportunity
criteria when the family’s stresses
the opportunity to
to develop skills, live within boundarand child’s behaviors are honestly
ies and interact.”
disclosed to the agency. Ask for a
develop skills, live within parent team meeting and make sure
UNDERSTANDING
you give notice to record the proTHE SYSTEM
boundaries and interact. ceedings 24 hours in advance. Keep
When school-age children need more
in mind that if your child moves to
protection and super vision than
a non-crisis group home, the child’s
a family can manage, the parents
education is served by that school
should contact their state developdistrict. And when a child is placed,
mental agency. Before a family is offered full-on residential a parental share of costs is determined based on the
placement, many in-home options are offered. Day care family’s income and special needs.
aides for working parents, home behavioral services, parent training, home respite workers, and one-to-one aides EXPLORING THE OPTIONS
for behaviorally challenged kids can keep a child func- Having spent time with teens on the spectrum, plus
tioning smoothly. In-home staff can handle the personal “typical” teen legal plaintiffs who’d suffered in abusive
care duties, protect parents from injury and take the group homes and bad foster care, I’ve visited a few group
child on community outings. However, if parents accept homes and psychiatric hospitals. Walking into one for
in-home staff, they must hire and train their own people the first time can be emotionally agonizing for any paror use an approved agency. Both involve scheduling, su- ent, even more so when you have a child with special
pervising, letting staff in and hosting them in the home. needs. However, I urge you to take time to look around,
The daily paperwork and loss of privacy are draining, talk to staff and meet the kids. I was very moved to see
even with good employees. Other realities include staff the director of two homes crying on my first visit to her
turnover, absenteeism, poor agency management, or hav- teen group home. A boy she’d had for two years expeing a bad employee steal from you or file misleading Child rienced a seizure and had just departed for a medically
Protective Service reports, because most approved care fragile home, and she was missing him. Although her
home was more cluttered than I liked, it was nonetheless
workers are mandated reporters.
One interim option is out-of-home respite care in a small beautiful and warm in a gated luxury community, with
family group home (called “empty bed” respite in California, constant laundry running, two sets of shoes left outside
for just one night or up to three weeks per year). Other the door so the boys didn’t track mud in, and many hugs
placements include emergency crisis homes for children who and snacks when they arrived from school. I also visited
b
a
34 AGES & STAGES
The Ideal Group Home — A well-organized floor
plan supports easy circulation and staff monitoring.
a grandma-run home where her family members pitched
in to raise five seriously impaired male teens, showering
them with church hymns, southern cooking and constant
hugs. These friendly homes reminded me that an ASD
child probably won’t care if the décor is dated or the mail
isn’t sorted every day—and while you might not get a
perfect place, you may get a perfect caretaker.
For families in crisis, other options may include partial
or full temporary hospitalization in a child psychiatric
facility (paid for by insurance sometimes). These facilities can evaluate a child and his current medications,
provide on-site or day program education, and release
the child when stabilized. The key to accessing them is
getting a medical or emergency provider to admit the
child. Developmental agencies also offer special nursing
facilities if needed.
Often, parents can’t see or accept that their beloved
child belongs in a particular placement, even in a crisis,
because no place will be like your home. Just remember:
no treatment or placement is necessarily permanent, and
such changes can create progress. The more you talk to
other (even non-ASD) parents, the more you discover how
common placements are: it’s just that people don’t often
discuss it.
AGES & STAGES 35
There are also a few traditional “institutions,” hospitals
or developmental centers still open for people with diagnosed intellectual disabilities plus very severe behaviors
such as extreme aggression, self-harm or eating of non-food
objects, although clients are admitted only under rigid
circumstances. If your child has such challenges, discuss
all the options with your child’s psychiatrist and developmental caseworker.
ADULT HOUSING OPTIONS
Many families plan on keeping their adults with ASD
home for a lifetime. While that can be okay for some,
often the child matures more fully from living elsewhere.
Additionally, parents might find themselves without sufficient income, space or health later in life. In Orange
County, California, a county elder care specialist told me
she’s seeing more undiagnosed ASD adults in their forties
left without resources by parental illness or death. One
small area homeless shelter already has two adults with
autism. The need has just begun to rise, and housing is
not keeping pace.
Children of any age might receive in-home support
services from their developmental agency, in order to keep
them in the family home. For adults 18 or over, if they
36
AGES & STAGES
Top 7 Housing Considerations
It’s clear that whatever living situation a person with
ASD needs, seeking it must be done with extreme
care and sensitivity for everyone. Current options are
not easy to access and some are not the high quality
we want. Parents need to advocate for more thoughtful living situations. In the meantime, families can rest
knowing there’s a place for their kids if it’s finally time
for a change.
Things to consider:
.Look over the weekly menus, ask for a list of
cleaning chores, inspect the bedding, and look
for health hazards.
3Ask about residents’ rights and privileges: are
they posted? Do you see residents using their cell
phones or watching movies of their choice?
$Are there video cameras in public areas? How are
nonverbal residents treated to ensure their safety
and communication?
/Ask about use of restraints, behavior rewards programs, and consequences for infractions.
1Observe how workers interact with residents. Do
they treat them warmly, know their likes and dislikes? Or do they speak disparagingly of them?
4Ask when staff is allowed to leave the facility or be
alone with residents, and under what circumstances.
2Check with the local police for past incident reporting;
contact your state licensing board for past violations
and operating requirements.
are not under a conservatorship (which grants parents or
guardians the right to make decisions for the child), or
parents were denied a conservatorship in court, a parent
cannot make service decisions. If the adult child chooses
not to have services, he may be terminated. He would
then only be entitled to services such as state/federal
medical benefits, welfare and SSI Income (SSI ranges
from $700-900 per month—and for a family on welfare,
the payment might be higher, a situation likely to occur
for some families due to ASD-related loss of parental employment). And even conservatorships have their limits: a
parent cannot prevent a consumer from having a sex life
or getting married without a legally significant reason,
although individual out-of-home placements may have
certain rules for residents.
If you can’t keep your child at home or treat him to his
normal lifestyle without services, he might have to learn
“the hard way” there’s not enough money to support his
special interests, computer activities or eating out. An adult
with ASD is going to have preferences and like any adult
child, you may not agree with them and have to use “tough
love.” If they don’t wish to live within your rules, they
would need to accept services or find another place to live.
There are many levels of housing for adults with ASD.
Woodbine House has published an easy new guide called
Moving Out which offers several housing models, from
forming a group home, using your own home, and supported or independent apartments. This guide even provides
checklists for adult children and parents to figure out their
feelings and desires. Because many parents have a longcherished dream of buying or leaving a home for their
adult kids, Moving Out even outlines the financial, tax and
management issues required to accomplish it. Still, stepping
into established options is the easiest way to go.
For now, the fastest housing is an established group
home. These typically serve four to six adults of the same
sex. You can obtain a list of those with openings from your
developmental service agency. When you call, you’ll be
asked a few questions about your child, which may earn
you a visit. He or she might be offered a trial overnight
or week-long visit to see if the fit is right. A patchwork of
funding applies, so cooperation with state developmental
and housing agencies is required.
There’s also adult foster care, which is a nice option if
the host family has good chemistry with your child. Some
people do this to provide company for their own disabled
child in addition to earning extra money.
Apartments are also popular. Often a low-income Section
8 housing voucher makes sense (although waiting lists can
be a decade long—sign your child up as soon as he’s 18).
Your agency coordinator can look for a roommate who
already has a voucher to speed things up. Then an independent agency or individual can provide the appropriate level
of care, ranging from intermittent visits to daily support.
You can also rent the child a room in your house, or he can
AGES & STAGES 37
live with a caretaker, and his SSI goes toward rent payment
(a client may be allowed to keep $135 a month for personal
needs). Some state programs offer minimum wage to caretakers of disabled or elderly people, and an autistic person
can qualify for a significant amount per month in California
in caregiver funds (In-Home Supportive Services).
interaction is included in Glennwood’s mission. “Residents
must volunteer somewhere,” says Enmeier. “We want people
to know them as Johnny who works in the community,
not Johnny who lives at Glennwood. That sentence should
never be said. We all walk around with our own issues, but
we don’t label ourselves with them, so why should people
with disabilities?”_
INVISIBLE SUPPORTS
One emerging form of apartment living is Glennwood
House in Laguna Beach, California, a new apartment comRESOURCES
plex with “invisible supports.” Up to 63 young single adults
` Guide to Living Arrangements for Adults with
with various mild-moderate disabilities including ASD have
Developmental Disabilities (California)
moved into a former senior living complex overlooking the
www.rcocdd.com/consumers/description-of-services/
Pacific Ocean. Despite not qualifying for developmental
residential-services/its-all-about-options/guide-to-livingarrangements-for-adults-with-developmental-disabilities-2/
agency dollars (due to the past experience with larger “institutional” settings, the local agency won’t fund anything
` Guides for under and over 18 (California):
over six beds), founder Randy Larson managed to scrape
www.rcocdd.com/consumers/description-of-services/
residential-services/
together donations from regular and celebrity folks to fund
this remodeled facility where $1,900-$2,500 per month
` Moving Out www.woodbinehouse.com
includes a dining hall, chef, medical and nutrition staff,
` Chart outlining California costs and care levels of service/
activity director and outings, and an entitlement coordinahousing options
tor to maximize residents’ benefits.
www.rcocdd.com/wp-content/uploads/pdf/consumers/
OptionsGuideChart.pdf
An endowment to reduce monthly fees and build a
job placement program is being created. Residents’ SSI
payments can be used toward rent,
but Glennwood doesn’t insist on receiving the checks, as many group
homes do. Mini-fridges in rooms
and packed lunches are available,
although no in-room cooking is
permitted by the fire code. Dating
/IIRI2I[,EQTWLMVI
is accepted, although sex is only al
lowed off-campus according to their
[[[ERXMSGLRIIHY
“house rules.” Although several
LEARN MORE TODAY
residents are on birth control as it’s
their personal right, getting married
or having children means residents
must leave the “single life” and find
family-friendly living facilities.
“Laguna Beach wrapped their
Earn your master’s or certificate at Antioch University New England
arms around us, but other communities have not, because they see
residents as different,” says Stacey
Q APPLIED BEHAVIOR ANALYSIS
Q AUTISM SPECTRUM DISORDERS
Enmeier, Assistant Director. “Agencies
(ABA) CERTIFICATE. ABA is the
CERTIFICATE. Improve your skills
primary treatment for autism.
and learn strategies to work with
want small housing, but the reality is
Become
a
board-certified
behavior
people on the autism spectrum who
that neighbors or residents are not
analyst
(BCBA®)
or
a
board-certified
have Asperger’s, High Functioning
prepared. It takes time to maintain
assistant behavior analyst (BCaBA®)
Autism, or PDD-NOS in nine months.
social skills and relationships in the
in five semesters.
community, especially when parents
Q CONTINUING EDUCATION
are gone,” cautions Enmeier, and
Q MEd or MA with a concentration in
CLASSES are also available.
ASD or ABA.
funding for housing and this type
of social safety net are just not there,
AUNE’s programs accommodate working professionals with weekend classes.
she states. “Loneliness and isolation
Call 800.552.8380 or visit www.antiochne.edu/ap/asd for information.
can be the result of small community
housing,” so friendship and social
AUTISM SPECTRUM TRAINING
38 BIOMEDICAL UPDATE
Repeating History
Investigating Pink Disease Down Under Highlights its
Many Similarities to Autism…
B Y D AV I D K I R B Y
F
orever and a day” may sound cliché, but that’s how by teething powders, typically applied in Western countries
long the journey from New York to Australia seemed to the gums of children at about six months of age. One acto take. After a six-hour flight to Los Angeles and tive ingredient in most brands: inorganic mercury.
a three-hour layover, I boarded a
The profitable teething-powder
Qantas double-decker for the long
industry, along with scientists and
haul to Melbourne. During the
medical experts, insisted the pownight I asked a flight attendant how
ders were harmless, and essential
I was always screaming,
long we’d been in the air. “Nine
to the health of a developing child.
hours,” he said. “Halfway there.”
They noted that most exposed chilcrying continuously…I had dren developed no symptoms (only
Australia may be a world away,
but most Americans will feel at
one in 500 kids given the powders
a red rash. They didn’t
home there. I did. I was also excited
got the symptoms), so it could not
about the purpose of my trip. I was
be the source. The fact that sympknow what was wrong.
heading Down Under not for tourtoms appeared around the same time
ism, but to work on a groundbreakchildren were teething was purely
ing documentary, From Acrodynia to
coincidental.
Autism: Mercury Across Generations,
I wrote extensively about acroMore Evidence of Harm, sponsored by SafeMinds, about dynia in my book Evidence of Harm, largely because the
the mostly forgotten illness, acrodynia, more commonly symptoms were so like those of autism. Lyn Redwood,
called “Pink Disease” in Australia.
Sallie Bernard and other SafeMinds parents recognized the
Pink Disease ravaged children in Europe, North
similarities and published a paper, Autism: A Novel Form of
America and Australia in the first half of the
Mercury Poisoning, that gave side-by-side comparisons of
20th Century. Many did not survive. The name
comes from the fact that many children de_TOXIC TIMES—Mercury-containing products such as Calomel and
veloped raw, peeling hands and feet. Other
teething powders, commonly used in the first half of the 20th century,
symptoms included social withdrawal, lack
are now known to have seriously injured countless young children.
of eye contact, loss of language, repetitive
and self-injurious behaviors, body-rocking, toe-walking, sensitivity to light, noise
and touch, low muscle tone, immune disorders and respiratory problems.
Sound familiar?
Some researchers and parents suspected the ghastly symptoms were caused
b
a
BIOMEDICAL UPDATE 39
THE ACRODYNIA ERA—(Left) The
campsite at Eildon, one of many
set up for victims of Pink Disease.
(Right) Heather Thiele and her twin
brother Les at the age of two.
BIGSTOCK
mercury toxicity and autism. At one point, Redwood found
a photo in an old acrodynia textbook depicting a pale,
droopy-eyed, sickly boy who could barely hold his head
upright. She compared it with a picture of her own son,
Will, at the same age. It looked like the same child.
The survivors of Pink Disease are now well into
middle age, or older. Their stories had never before been
put to film. SafeMinds commissioned the documentary,
which was produced by film students from Swineburne
University of Technology in Melbourne. We spent 10 days
travelling around the gorgeous subcontinent to interview
a handful of Aussie survivors. The stories we collected
were gripping, moving, and heartbreaking.
SURVIVING MERCURY’S
TORMENT
There was no question who
our main character would
be: Heather Thiele, a longterm survivor who created a
Pink Disease support group
in Australia in the 1970s.
Heather lives with her husband
in a modest farmhouse on the
eastern edge of the Outback,
near the tidy town of Dubbo.
I wrote about her in my book
and we had corresponded. It
was great to meet this legend.
We spent an entire day interviewing Heather. What a
tale she had to share. As a girl,
her symptoms mirrored those
of autism. “They started at six
months, and they got particularly bad from nine months to
about 18 months,” she says in the film. “I would have convulsions for hours at a time, and my mother would have to
put me into cold water to get my temperature down.”
Heather also wrote a paper detailing the ordeal of her
childhood. “Immediately, I became lethargic, sensitive to
noise, light and touch, lost my appetite and consequently
lost weight alarmingly. I lost muscle tone and I found it hard
to hold my head up or sit, and although I was on the verge
of walking, I became like a floppy doll. The skin on the soles
of my feet and palms of my hands became bright pink and
began to peel off. I would scream if placed in a bath, so my
mother started “washing” me with olive oil and cotton wool.
Nothing seemed to pacify me, and I would go for days without sleep. My mother says
my cry was more like the
bYOUNG VICTIMS—Early descriptions of Pink Disease noted that
whimper of a frightened
the children affected had faces that “reflected sadness.”
animal, and could last for
periods of 24 hours or
more, without a break.”
She also engaged in
repetitive behaviors. “I’d
be sitting, and rocki ng b ack w a rd s a nd
forwards,” she recalls
in From Acrodynia to
Autism. “I’d bang my
head along with the rocking.” She also walked
“on tippy-toes” until
she was 10. No wonder
Heather felt “very isolated, I felt like I was being
smothered.” Keeping eye
40
MERCURY MENACE: SPECIAL REPORT
b
What is astonishing, and the central, poignant message of
From Acrodynia to Autism, is that humanity was warned, over and over
again, that people and mercury simply do not mix well.
a
contact with others was almost impossible, leading one
“Mercury naturally finds its way to the brain,” David
teacher to admonish her, “You look at me, you ignorant little explains on film. “In humans, it can get through the
girl, when you talk! Don’t you look away!”
blood-brain barrier. But then that’s not the end of the
Everywhere we travelled, we heard similar stories.
story because the mercury’s still there, so the mercury can
Elizabeth Meyers was interviewed in downtown Syd- still go on, bind to other sites, kill other cells, interrupt
ney. “I couldn’t stand to be touched anywhere on my other enzymes.”
body, and screamed and cried day and night,” she says in
David came across a book describing acrodynia
the film. “My mother stayed home, of course, to look after symptoms and was astonished. “It read exactly like you
me. I was very irritable, crying, clammy. I’d been sitting, would write a case study about an autistic child,” he
and I regressed back to lying.”
marvels. “The withdrawal from soAbout an hour south of Sydney
cial contact, the loss of eye contact,
rests the beautiful beach town of
the loss of language, the irritability,
Wollongong, home to acrodynia surthe banging the head against the
vivor Peter Hobbs, who lives on, yes,
wall or beating your head with your
Mercury Street. Peter has suffered
fist, the light sensitivity, the sleep
severe health impacts of mercury
disruption. I was speechless after
poisoning since he was a baby. “I
reading this book.”
He is convinced that “the research
was always screaming, crying conis very clear: there’s an association
tinuously,” he recalls on film. “I had
between mercury and autism.” Asa red rash. They didn’t know what
suming that people who developed
was wrong.” He also had, and conPink Disease were born with “an
tinues to have, severe respiratory
idiosyncratic sensitivity to mercury,”
problems. “I would stop breathing in
he adds, “then potentially that would
my sleep and they would have to put
carry through to the descendants of
me in a tent and start me up again
aSIGNS & SYMPTOMS—Many victims of
Pink Disease survivors.”
with an oxygen tank,” he says. (Will
Pink Disease developed red peeling skin on
Taking that logic a step further,
Redwood was also hospitalized for
their hands and feet.
he notes, “If mercury is somehow asrespiratory problems and required
sociated with having autism, you would then expect to
breathing treatments and oxygen as a toddler).
Heather, too, battled respiratory disease, a known ef- see more autism amongst the descendants of people who
fect of mercury exposure. She had pneumonia “dozens survived Pink Disease.” To test that theory, David and colof times” as a child, and also slept at an angle to drain league Kerrie Shandley undertook a painstaking survey
mucus. For many, breathing problems persist. “About a of survivors in Australia, and their descendants, using
third of the survivors have bronchiectasis, which affects information culled from Heather Thiele’s support group.
“We received the data on thousands of children
the cilia in the bronchi, so the lungs can’t work properly.”
One awful attribute of Pink Disease that differs from and grandchildren of those survivors. The autism rate
amongst them was one in 25,” he says. “Compared to
autism is early death.
Janice Collins lives in the fresh-air town of Goldburn, our national prevalence, matched birth year to birth
nestled under lush green mountains between Sydney and year, of about one in 160. So we had a seven- or eightCanberra. Five of her siblings died in infancy, three of fold elevation in autism. But only one in 500 exposed
them from Pink Disease. In the town where Heather was children got Pink Disease. So we knew that there was
born, 19 children developed acrodynia. She was the only this individual sensitivity.”
The study, published the Journal of Toxicology and
one to survive, even though the doctor told her mother,
Environmental Health investigated the hypothesis that
“She’s so ill, she’ll never make school age.”
autism can result from the interaction between mercury
MERCURY, AUTISM AND ACRODYNIA
and a genetic predisposition to heavy-metal sensitivity.
David Austin is a psychologist, autism researcher and par- “The large elevation in autism prevalence in this group of
ent of a young son with severe autism who lives outside children was startling, especially given that rates of other
Melbourne. He was instrumental in the making of From childhood disorders were at expected levels,” the authors
Acrodynia to Autism, in which he provides a riveting account wrote. “The thing that differentiates these children from
of his research.
the general population, to which they were compared, is
MERCURY MENACE: SPECIAL REPORT 41
a family history of mercury
sensitivity. We were simply
blown away by the results.”
One person who was not
surprised was Heather. “I
think there’s a higher incidence of autism and ADHD
and all those behavioral problems in families of Pink Disease people. There is a definite connection,” she says. “I
relate fully to autistic people.
I feel that they’re so much like
me. I’ve used the fact that I
have symptoms the same as
autism to explain to people
that both are caused by mercury. People are only too willing to understand that.”
perger’s, until now,” he says.
“But I’ve had mercury in my
vaccinations. And I’ve got a
grandmother who’s survived
an awful lot of mercury, so
it’s possible.”
It is possible that Steven
was negatively impacted by
mercury just as his grandmother had been many deSymptoms and Similarities between Acrodynia and Autism
cades before. What is asPink Disease (Acrodynia) SympAutism Symptoms from
toms from L’Acrodynie by A.W.
Autism: A Novel form of
tonishing, and the central,
Mercury Poisoning,
Cameron, 1931 and PD survivor
poignant message of From
Heather Thiele
Bernard, et. al. 2001
Acrodynia to Autism, is that
Mood alterations describes as a loss
6RFLDOGH¿FLWVVRFLDOZLWKGUDZDODYHUof joyfulness. If someone comes close VLRQWRWRXFKGHSUHVVLRQ
humanity was warned, over
to them they move away or cry.
ÀDWDIIHFW
and over again, that people
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and mercury simply do not
ODXJKLQJ7KHLUIDFHVUHÀHFWVDGQHVV DORRIQHVVGHSUHVVLRQSUHIHU
to be alone.
mix well.
In most children there is irritability. The ,UULWDELOLW\DJJUHVVLRQWHPSHUWDQ“Humans seem to have
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been
so slow, glacial, in doFUDQN\
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ing something about mer,QWHOOLJHQFHPD\UHPDLQLQWDFWEXWLQ %RUGHUOLQHLQWHOOLJHQFHGHJHQHUDWLRQ
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UNDENIABLE TRUTHS
cury,” says David Austin,
recovery of IQ.
As the film points out, chilstating the tragic but unde6RPHFKLOGUHQKLWWKHPVHOYHVEDQJ
Self-injurious behaviors to self and
dren today are exposed to
niable truth. “We’ve known
WKHLUKHDGDJDLQVWIXUQLWXUHELWHWKHP- RWKHUVKHDGEDQJLQJKLWWLQJWKHKHDG
mercur y in many ways:
how toxic it is for millennia,
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5HVWOHVVQHVVDQGURFNLQJ
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food, air, water and vacbut it seems like we keep
IURPVLGHWRVLGHRUUHSHWLWLYHEHKDYEHKDYLRUVVWHUHRW\SLFDO
cines, to name a few. Such
having to suffer catastroiors.
behaviors.
cumulative exposure to
phes to remind ourselves of
6RPHFKLOGUHQUHSHDWWKHVDPHZRUGV (FKRODOLDUHSHDWLQJZRUGV
mercury, both pre- and postmercury’s toxicity.”
IRUKRXUVRUDUHREVHVVHGZLWKLPDJHV DQGSKUDVHVDQGREVHVVLYH
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natal, would clearly be more
Heather Thiele is equally
6RPHV\PSWRPVDUHVR
$Q[LHW\VFKL]RLGWHQGHQFLHVLUUDdangerous to those children
perplexed,
and saddened,
SURQRXQFHGWKDWWKH\UHVHPEOHDFXWH tional fears. (Catatonia also recently
with a genetic sensitivity,
that children around the
SV\FKRVLV
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a DNA-based vulnerability
world are still being need,QVRPQLDVRPHFKLOGUHQVSHQGGD\V 6OHHSGLVWXUEDQFHVLQVRPQLD
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inherited from their parents
lessly exposed to mercury,
KRXUVDQLJKW
and grandparents.
especially thimerosal, a
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SKRWRSKRELDVRXQGVHQVLWLYLW\DQG
and touch.
aversion to touch
firmed what the paper reease first began claiming
/RVVRIDSSHWLWHDQGYRPLWLQJPD\EH $QRUH[LDQDXVHDIHHGLQJ
ported. Janice’s son and
its small victims. “I have
REVHUYHGZLWKPXVFXODUK\SRWRQLD
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grandson, for example, both
great anxiety over the fact
ORZPXVFOHWRQH
HVSHFLDOO\XSSHUERG\
have Asperger’s. Then there
that this happened, that
Diarrhea has been described in the
'LDUUKHDFRQVWLSDWLRQ
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is the case of Audrey Neilson,
we were poisoned, and
FRQVWLSDWLRQ
discomfort and colitis.
a Pink Disease survivor in
there was no apology,” she
Loss of eye contact and
3RRUH\HFRQWDFWJD]H
the town of Newcastle, north
laments near the close of
SUHIHUHQFHWREHOHIWDORQH
DYRLGDQFHSUREOHPVZLWK
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joint attention.
of Sydney, whose daughter
the film. “We have suffered
JRLQJRQDURXQGWKHP
Caroline Williams has severe
a life different to what it
%ULJKWUHGIHHWDQGKDQGVSHHOLQJRI 5DVKHVGHUPDWLWLVRWKHUVNLQSUREADHD and grandson Steven
should have been. And now
VNLQLQVKHHWV
lems.
has Asperger’s.
I see history repeating itself
“Steven was extremely clingy as a
in the vaccine/autism story.”
Click here to watch
baby, he liked his own company even
Heather, an Australian survivor typiback then,” Caroline says of her son. “His
cal of that country’s rugged, stoic endurFrom Acrodynia
teacher had noticed that he’d sit on the
ance, exhorts viewers at the end of the
to Autism:
chair and rock.” Steven himself now wondocumentary to, “Refer back to the humMercury Across Generations,
ders if he and his grandmother were both
ble, simple people like myself to say what
More Evidence of Harm
poisoned by mercury. “I never thought
it’s like,” she says plaintively. “Don’t ever
Pink Disease had anything to do with Aslet this happen to another generation.” _
42 TIPS FROM THE TEAM
The Parenting Evolution
Moving from “fight or flight” to focus and choice…
BY L AU R EN ZIMET
1. listening with full attention
2. non-judgmental acceptance of
self and child
3. emotional awareness of self
and child
4. self-regulation in the parenting
relationship
5. compassion for self and child
LAUREN
LAU
LA
UREN ZI
ZIME
ZIMET,
METT, M
MS/CCC/SLP
STOCK.XCHNG
A
s parents, we are continuously evolving. Our parenting style shifts and changes
as we obtain new and more evolved
ways of parenting. Change is not
always comfortable. However, when
accompanied by learning and selfgrowth, the silver lining will most
often appear.
Once we learn that our child has
a diagnosis, whether it’s autism or
something else—it’s the awakening
of our new self. This is the self that is
required to stand in his or her adult
shoes, for there are mountains and
hills to climb, as well as pastures to
appreciate. While our blueprint for
parenting has likely been modeled
on how our parents raised us, when
faced with a new landscape, we may
find we need a new blueprint. When
we take time to reflect on how we were
parented and how we are parenting,
what we want to give our children and
what we do not want to pass onto our
children, this opens the doorway to
mindful parenting.
What is mindful parenting? In an
article in Clinical Child and Family Psychology Review, September 2009, Duncan,
Coatsworth, and Greenberg outline five
aspects of mindful parenting:
If, in our own evolution, our commitment is to parenting mindfully, the
day can begin in a chaotic whirlwind
or it can begin from a point of calm.
The difference is not dependent on
what our morning entails, but rather
how we choose to attend to it. Each
morning we awake to a new day and
another opportunity to feel joy, peace,
calm, happiness—we pick the feeling.
You see, we, as parents, all have
our “stuff”—our issues, our challenges: with or about our children, or
spouses, and some of us may realize
we have our own fears. I like to view
a challenge as a gift. Can you envision a challenge or a frustration as a
present? Try it. Imagine that you have
been presented with this “gift” and
although it doesn’t appear as a wanted
gift, you have received it nonetheless.
Wrap this situation in the most appealing giftwrap; be as creative as you
can. Take a slow, deep breath—hold
Passionate about giving children a healthy start in life, Lauren Zimet, MS/CCC/
SLP, is a speech, language and early communication specialist with more than 15
years of professional experience. Lauren is the founder of The Healthy Foundations Program, which facilitates brain health education in Georgia, teaching
children about their brains and bodies in order to make healthy life choices. A
strong advocate of brain health, Lauren supports parents on complex journeys,
facilitating the use of nutritional support for learning and behavior, self-esteem
and social thinking. Lauren can be reached at healthyfoundationsatlanta.com or earlyinsights.com.
the breath—and gently exhale. Feel
your body—how is your body connected to the earth? Are you sitting
on a chair? Standing on your feet,
barefoot or in shoes? Envision yourself
grounded, secure and a part of the
earth. To be grounded means to focus
on the ground and your connection
to it. Grounding is a simple yet useful
exercise for both adults and children.
When someone is ungrounded, they
may feel light-headed or unstable, distracted. If you can’t keep your feet
steady sitting in a chair, constantly
fidget, have a hard time focusing, have
sleep and energy issues and are very
emotional, these can be signs of being ungrounded. Some advantages of
being grounded are increased attention, accuracy in reading social cues,
the ability to choose your thoughts
and accompanying emotions, and an
overall sense of calm and well-being.
Being grounded supports anyone in
being proactive rather than reactive.
To help yourself or your child feel
more grounded, here are some tips:
envision your feet with roots cascading through the rich, cool soil, picture yourself connected to the core of
the earth, your foundation is strong,
stable, enabling you to sway and move
flexibly, yet knowing and feeling you
have a firm confidence that all is well.
As you imagine yourself being connected to the earth’s core breathe
deeply and slowly, pulling the energy
from the core up into your feet and
through your body. You may feel an
increased sense of calm and confidence as you focus on this exercise.
With it may come the awareness that
you can handle what lies before you.
This gift is the opportunity that is
meant to be yours. You have found
your own route to self-regulation, you
have modeled this for your child and
this enables your brain’s function to
move from a “fight or flight” response
to one of focus and choice. _
PHOTO COURTESY OF FLAVIO TAKEMOTO
TIPS FROM THE TEAM 43
Unscrambling “MTHFR”
The genetic mutation test you don’t want to miss…
BY BA R RY SM ELT Z ER
N
ot too long ago, I had a patient in my clinic who had been
treated for some time by an alternative medicine practitioner. The
parents were hopeful, but frustrated
by the lack of progress their child was
making both health-wise and developmentally. They had done some supplementation, dietary interventions, and
even hyperbaric oxygen, but nothing
was making a significant impact. I went
through all of the patients past lab work
and although there was a lot of blood,
urine, and stool testing, one thing was
missing that could impact all of it—
MTHFR mutation testing.
MTHFR?
MTHFR stands for Methyltetrahydrofolate Reductase (although it has earned
itself a popular nickname among autism
parents!). It is a critical enzyme process
in the methylation and folate cycle that
recycles homocysteine to methionine.
If there is a significant enough block
in the enzyme process or an increased
demand, detoxification will not be able
to keep up and chronic inflammation
and oxidative stress will ensue. There are
over 60 signs, symptoms, and medical
conditions associated with or caused by
the MTHFR mutation. (www.MTHFR.
net). Here are some of those conditions:
Sample Conditions associated with MTHFR
Autism
ADHD
Addictions: Smoking, Drugs, Alcohol
Tongue tie, cleft
pallet
Miscarriages
Migraines
Blood Clots
Chronic Fatigue/
Fibromyalgia
Potential Drug
Toxicities: Methotrexate, Nitrous
Oxide, etc.
Cancer: Oral,
Rectal, Gastric,
Leukemia, etc.
Who Should Get Tested?
In a word: everyone. Even in the sample
listing above, there is not an age group
not at risk for some of the potential
complications of having this mutation.
The testing is relatively easy to get as it
is a blood draw that can be run by the
regular lab companies Labcorp and
Quest in addition to specialty companies like Spectracell. There is also a
much more comprehensive test of all
the nutrigenomic mutations and their
potential risk factors for diseases available by the company 23andme.
What To Do
With the Results?
There are two main mutations identified in most MTHFR testing. There is
the A1298C and the C677T. Both have
two copies as they are on both strands
of the double-helix DNA in our cells.
You can have one copy of one (heterozygous) or two copies (homozygous)
for one mutation, or one copy of both
(complicated heterozygous.) The different combinations are significant as they
vary in the severity of the blocking. The
C677T is most commonly referred to
as the more severe form, but more and
more researchers and clinicians are
finding reasons to treat the A1298C
form as well. The best way to get the
results interpreted and treated appropriately is to find a practitioner well
versed and experienced in the various
combinations of MTHFR mutations
and how to treat them.
Treatments
The treatments for the MTHFR mutation involve avoidance of toxicities,
improving dietary intake of high antioxidant/nutrient dense foods, and the
right supplementation. One thing to
remember about supplementing for
this mutation is that not all supplements are the same quality and just
getting more folic acid in your diet is
not enough. There is evidence that folic
acid supplements, most commonly
prescribed for MTHFR, may not be the
best form to give and what is needed
is the broken down form, folinic acid.
This is again where choosing a practitioner experienced in treating the
mutations is very important.
There are four excellent resources
to learn more about MTHFR supplements, toxin avoidance, how to clean
up your home and environment, and
also how to find and cook delicious,
nutrient-dense food.
` Environmental Working Group
www.ewg.org
They will show you what is in your
food, home, and environment and
how to minimize your exposure.
` Healthy Child, Healthy World
www.healthychild.org
This is an excellent resource for
the family and for kid-friendly, safe
products and foods.
` Mother Earth News
www.motherearthnews.com
This provides a wealth of
information on toxin avoidance,
homesteading, organic gardening,
and natural health.
` MTHFR.net
www.MTHFR.net
Created by Dr. Ben Lynch, ND,
this site has information regarding
the mutation, what supplements
are beneficial, and how to reduce
the impact on future generations. _
BARRY
BARR
BA
RRYY SSMELTZER,
MELT
ME
LTZE
Z R MPAS, PA-C
...is the owner of Healing
Provisions PLLC in San Antonio
and specializes in biomedical and environmental
medicine interventions to
assist in healing the body. He has dedicated his career
to healing children and families after his own
son was diagnosed with multiple medical
conditions, from which all he has significantly
improved. Barry has presented to both local
and national organizations including TACAnow,
Holistic Mom’s Network, San Antonio Natural
Parenting, Any Baby Can, National Autism Association and Autism One. He has also written
several articles for the Autism File and Autism
Science Digest. Barry is happily married to his
wife of 15 years, Linda, and is the father of five
wonderful children. 44 GREEN HOME — HEALTHY KIDS
Going GREEN
on a Budget
Common sense practices allow for a healthier
lifestyle without breaking the bank…
BY DEIRDRE IMUS
O
f all the reasons to go green—
health, style, environmental
responsibility—affordability does not often top the list. Organic, natural products and food are
typically more expensive than their
conventional counterparts because
manufacturers use better quality
ingredients and less toxic growing
practices, two factors for which consumers pay a premium.
But deciding to live a purer life, for
your own benefit and for that of your
family, shouldn’t come with a hefty
price tag, and it doesn’t have to. You’ll
be surprised just how easy, affordable,
and fun it can be to integrate green
into your everyday by thinking just
a little bit outside the box (and then
making sure to recycle it!).
TRASH THE TOXINS
According to the U.S. Centers for Disease
Control and Prevention, more than
90 percent of poisonings occur in the
home, and noxious cleaning products
are among the most common culprits.
One of the easiest ways to make your
home a greener (and safer) place to live
is by trashing toxic cleaning products
full of ammonia, bleach, phosphates,
petroleum solvents, phenols, and other
harmful, disease-causing ingredients.
Rather than risk your children’s
health—and risk emptying your bank
account by purchasing pricey green
DEIRDRE
DEIR
DE
IRDR
DREE IMUS...
IMUS
IM
US...
cleaning products—look no further
than your own cupboard for inexpensive, effective alternatives.
Distilled white vinegar works better than any toxic disinfectant you can
buy, and is notably cheaper: a gallon
(128 ounces) of the stuff can be had
for less than three dollars, whereas the
b
…by not purchasing—
and then repurchasing—
cleaning products
from the store, you’ll
accumulate fewer
plastic bottles and save
money on gas, thereby
decreasing your carbon
footprint.
a
same money will buy you just 32 ounces of conventional all-purpose cleaner.
As I note in my book Green This:
Greening Your Cleaning, the benefits
of white vinegar are many: it can dissolve mineral deposits and grease, re-
…Deirdre Imus is president and founder of The Deirdre Imus Environmental Health
Center® at Hackensack University Medical Center, founder of dienviro.org, a website
devoted to environmental health, and co-founder/co-director of the Imus Cattle Ranch for
Kids with Cancer. She is a New York Times best-selling author, and a frequent contributor
to FoxNewsHealth.com, and Fox Business Channel. In her quest to clean up the
environment for our kids, Deirdre developed the award-winning Greening the Cleaning®
program and product line, which replaces the hazardous ingredients commonly found in
cleaning agents with non-toxic plant-based ingredients. Deirdre has been the recipient of numerous awards
and honors for her impact as a leader in the field of environmental health.
move mildew or wax buildup, polish
some metals, and deodorize almost
every room of your house. It cleans
just about every surface in your home
except for marble, and just a tablespoon of white vinegar acts as a wonderful fabric softener.
If white vinegar seems too good
to be true, the news only gets better, because making a vinegar-based
cleaning solution is remarkably easy.
Simply pour equal parts water and
vinegar into a spray bottle preferably
one free of the chemical bisphenol-A,
and voila—you’ve concocted a homemade, ridiculously efficient, reasonably priced cleaning solution.
Other environmentally sound
cleaning agents that won’t break the
bank, and that you probably already
have on hand, include baking soda
(it scrubs shiny materials without
scratching, deodorizes refrigerators,
cleans jewelry and stainless steel, to
name just a few uses); lemon juice (a
natural odor-eater that cleans glass and
Formica); table salt (combine it with
lemon juice to clean copper, or with
vinegar to polish brass); and hydrogen
peroxide (dilute it to remove stains
from clothing and other surfaces).
The advantages of using these practical ingredients to clean extend beyond your wallet. Using such natural
agents immediately improves the air
quality in your home, which in turn
extends to improving your health, and
lowering the chances that you or your
family will contract an associated illness. Additionally, by not purchasing—and then repurchasing—cleaning products from the store, you’ll
accumulate fewer plastic bottles and
save money on gas, thereby decreasing your carbon footprint.
GREEN HOME — HEALTHY KIDS 45
KEEP THINGS LOCAL
Another way to go green, do right by
the planet, and pad your bank account
all at the same time is by changing
not just the foods you eat, but how
you acquire them. Organic produce is
pricey—there’s no two ways about it.
Rather than sacrifice quality, stop and
think about where your fruits and vegetables come from. Is the farm within
100 miles of your home? In the same
state? The same country?
Chances are, the longer the journey
from farm to table, the more you’ll pay
for organic produce because of the
increased resources required to get it
to the market—specifically gas. This
is why buying locally grown organic
goods is key, and not just because it
can be more affordable. When produce is grown close to where you live,
it is eaten and enjoyed in its prime,
particularly when it is in season; depending on where you live, this can
mean asparagus in late spring, and
apples in the fall.
Going green on a budget also
means prioritizing. Which aspects
of green living are most important to
you, and therefore worth dishing out
a few extra dollars? While eating a diet
comprised entirely of organic foods
could potentially save you money on
medical bills in the long term, this
savings is difficult to appreciate at the
supermarket, where organic items are
sometimes twice as expensive as their
non-organic equivalents.
That’s why it’s important to know
which conventionally grown fruits and
vegetables are “dirtiest”—or most laden
with toxic pesticides—and which are
cleanest. Every year, the Environmental
Working Group releases its list of The
Dirty Dozen and The Clean Fifteen in
an effort to help consumers decide when
buying organic is most prudent.
For instance, strawberries, spinach,
and sweet bell peppers routinely top
the list of most contaminated produce.
If you’re going to eat and enjoy these
nutritious items—which you undoubtedly should—it’s probably worth shelling out the extra cash for the organically grown version.
BREAK SOME
HOUSEHOLD HABITS
Adopting a more environmentally
responsible lifestyle means changing habits, particularly around the
house. These small but seismic shifts
will also save you money, and offer
the opportunity to teach your kids
what it really means to be a citizen
of the Earth.
` Start an organic garden. If this
task seems overwhelming, begin
with just a plant or two to become
familiar with the process. Eating
homegrown fruits and vegetables
cuts down on food costs, and
teaches your kids an important
lesson in self-sufficiency. Somehow,
produce grown in your own yard
tends to taste more delicious
than that grown elsewhere. Just
make sure you’re doing it right:
The Daily Green offers on its
website a wonderful guide to
organic gardening. http://www.
thedailygreen.com/green-homes/
latest/organic-gardening-tips460309#slide-1
` When possible, replace old
electronics and appliances with
those that bear the governmentbacked ENERGY STAR label.
They’ll run more efficiently,
thereby lowering your monthly
electricity bill and allowing you to
invest in other green technologies
for your home.
` In 2012, bottled water sales in
the U.S. totaled $11.8 billion,
according to the International
Bottled Water Association. This
exorbitant statistic means a chunk
of every American’s paycheck goes
toward bottled water consumption,
to say nothing of the plastic waste
our addiction to bottled water
creates. Rather than feed the beast,
invest in a reusable water filtration
pitcher. Most brands can be had
for a pittance ($30) compared to
the price of continually buying
bottled water, and they last for
years and years.
` When it comes to greening any
aspect of your life, and doing it on
a budget, common sense prevails.
Want to save money on plastic
and paper goods? Use those dishes
collecting dust in your cabinet.
Turn the lights off when you leave
a room, and instill this simple,
money-saving practice in your
kids. Explain to them that lowering
energy consumption reduces
greenhouse gas emissions, and is
good for all creatures on the planet.
It’s never too late, or too early, to
make small changes that can have
major repercussions—on your wallet, on your health, and on our collective future. _
Note: Information provided herein is not intended to treat or diagnose
any health condition. As always, consult your healthcare provider with
any questions or health concerns.
46
NUTRITION SOLUTIONS
Bench to
KITCHEN:
Introducing
The Autism Food Club
B Y PAU L W H I T E L E Y,
MARK EARNDEN
& ELOUISE ROBINSON
E
xperimental investigations suggestive that the use of a glutenand casein-free (GF/CF) diet
may ameliorate some of the more
disabling characteristics of autism
spectr um disorders (ASDs) have
been quite a constant feature in autism research history. Coupled with
PPAUL
AUL WHITELEY,
WHITE
TELE
LEY,
Y, PHD...
PH
... Paul is a researcher in autism fairly well known (or at least he likes to think so) for
his investigations looking at the use of dietary intervention for autism spectrum
conditions. With a University educational background built up in the North East of
England based in Psychology, he’s spent over 15 years of his subsequent postgraduate research career examining various aspects of autism and has authored over 20
peer reviewed papers on the topic including the results of experimental trials of the
gluten- and casein-free diet for children with autism. He has a passion for science
and the accurate communication of science forged during his doctoral studies and nurtured by various
teaching duties and conference presentations. This led him to set up a blog about various facets of
autism research as well as writing for several lay and professional journals and magazines on various
science related topics. The importance of food and diet to mental health and wellbeing represents the
centre-point to his career, and how the relationship between food and our physiology goes so much
further than mere subsistence and physical health.
ELOUISE
ELOU
EL
OUIISE ROBINSON,
ROB
OBIN
INSO
S N DIETITIAN...
... Elouise is a Dietitian who studied at Leeds Metropolitan University. During her
placement year she found a passion for working around health prevention, and
was invited by the public health team she spent time with, to work with them after
completing her degree; this allowed Elouise the opportunity to work with families, education settings food companies and catering departments. Moving on Elouise has then
specialised in working around health promotion for children, including working to support families with all types of food allergies and conditions which require therapeutic
diets out in the community to be able to have school meals. Elouise has a passion for cookery and developing new recipes and written many recipes to support families including a recipe booklet for fussy eaters.
MARK
M
ARKK EEARNDEN,
AR
ARND
AR
NDEEN, CHEF...
CH
... Mark is a chef to trade and a successful entrepreneur who is involved in several
enterprises and business investments. Mark was the founder of the award winning
Food Education Company in which he sold his interest in 2012. Mark has coupled
his business knowledge with his catering and education experience to develop and
launch innovative and creative businesses. Mark believes passionately about the
importance of health, wellbeing and education together with igniting a passion and
belief in young people that they too can succeed in life. Mark’s business’s represents
his success in these fields and reflects his passion for developing innovative businesses and creating
healthier communities. In addition to running businesses Mark also provides healthy food demonstrations with a difference where he entertains and inspires audiences for clients in a wide range of sectors
together with campaigns and media work. In 2011 Mark was asked to join the Percy Hedley College
board of governors, which he jumped at immediately, having been involved with the foundation for 7
years. Being involved with Percy Hedley has provided Mark with first hand experience of the challenges
faced by parents and professionals who care for individuals with autism.
a tide of recent research reports illuminating the potential mechanisms
for a dietary effect, the requirement
to translate research findings from
“bench to kitchen” has never been
more important. The Autism Food
Club (www.theautismfoodclub.com)
aims to bridge that gap.
Anyone with a personal or professional interest in autism has probably
heard about the GF/CF diet, and the
suggestion that at least for some on
the autism spectrum, dietary intervention might be another tool in the
intervention arsenal.1 Accepting that
autism is a very heterogeneous condition—possibly better described as
the “autisms” 2—more often than not
accompanied by other development
and/or physical comorbidity,3 the notion that dietary intervention might
potentially impact on the presentation of the condition is for some,
seemingly at odds with the perception of autism and its fundamental
nature.
Skepticism, even outright scientific hostility in some quarters, still
follows mention that the GF/CF diet
might impact on the presentation of
at least some cases of autism. This,
despite experimental evidence which
at least points to an interesting relationship between the proteins gluten
(present in various cereal grains) and
casein (from mammalian dairy produce) and some cases of autism. That
NUTRITION SOLUTIONS
and the myriad of personal accounts,
the so-called N=1, detailed in peerreviewed journals, books, blogs and
magazines reporting some positive
effect following dietary change.4
Some of the most recent reviews
of the evidence surrounding the use
of the GF/CF diet for autism 5 while
not wholly confirmatory, highlight
how for some on the autism spectr um, dietar y inter vention is an
important addition to other educational and behavioural interventions.
Positive changes to areas of communication, attention and hyperactivity
represent some of the more commonly reported observations despite the
current lack of clarity on the characteristics of potential responders and
non-responders.
Our group, ESPA Research, has
for several years been involved in
research looking at the potential efficacy of the GF/CF diet for cases
of autism.6,7 Our goal has been the
application of the scientific method
to answer the question of whether
dietary intervention can ameliorate
symptoms and improve aspects relating to quality of life. Our collected
efforts in this area have to a large
extent been aimed at those involved
in science and the policy-makers
who use science as their informer.
For people with autism, their parents and/or caregivers, siblings and
concerned others, interest surrounds
this type of intervention, but only
a few reliable sources of information concerned with translating this
world of science into practice exist.
The very practical notion of “bench
to kitchen” reflective of translating
research into real-life strategies lags
47
Science is all around us. That is observation, experimentation and the gathering
of evidence as part of the process of science. It’s these processes which inform
questions and hypotheses about who and what we are. With that most valuable
of commodities in mind—life—science is also starting to provide insight into how
health and ill-health come about and the potential value of certain medicines or
interventions in treating various facets of ill-health as and when it happens.
Even with a complicated and highly varied condition like autism, science continues to inform us about the potential underlying reasons of how and why autism
might come about. It also provides tantalising insights into how we might be able
to relieve some of the more distressing aspects of autism and positively impact on
quality of life.
But science can be a complicated affair. In the age of soundbites and social media,
the sheer quantity of science being produced, the technicality which often accompanies science and the variable quality of the reporting of science can sometimes
contribute to inaccuracy and distortion.
At The Autism Food Club we will cut through the volumes of sciences produced
and provide you with a simple roundup of the important science relevant to autism.
Jargon-free and provided in bite-sized chunks, we’ll provide regular updates about
how science is informing us about autism and importantly, how that science is being
practically translated into improving quality of life for those on the spectrum.
b
The fusion of science
and cookery is
perhaps not the typical
expectation one might
have of autism research
and practice.
a
behind when it comes to dietary intervention for autism.
In 2012, a chance introduction
led to a meeting between autism
researcher Paul Whiteley, dietician
Elouise Robinson, and chef Mark
Earnden. The discussions which
ensued around the gap between research and its application to real life
brought about the idea of devising
a resource to bridge this gap. The
Autism Food Club (w w w.theautismfoodclub.com) was born.
Our ideas are simple: translate
the science around dietary intervention for autism into something
readable for everyone and offer a
range of tasty, balanced and easy to
make recipes which are gluten- and
casein-free. Making it an on-line resource offers a way to make the idea
accessible to all no matter where they
are. Making it free continues that
theme of accessibility for all irrespective of wealth or circumstances.
The fusion of science and cookery
is perhaps not the typical expectation
one might have of autism research and
practice. We quickly realized that even
for those who consider themselves
48
NUTRITION SOLUTIONS
non-scientists, questions about the
evidence around dietary intervention were frequently being asked and
frequently only answered in “sciencespeak”. This is part of a larger issue
of the communication of science and
in particular, the need to demystify
science and the jargon which often
follows. Translating the language of
research is a core feature of the Autism
Food Club. The practical implementation of the GF/CF diet also represents
a vital part of the Autism Food Club.
Sure there are resources out there in
cyberspace and other media offering
recipes and meal ideas which are gluten- and casein-free (even free of lots
of other types of food) but recipe ideas
created and endorsed by a qualified
dietician and practicing chef were in
short supply. By saying this, we are
not trying to belittle the often huge
efforts made in this area. Merely that
having everything in one place with
some professional oversight might be
advantageous to many people.
Our plans for the Autism Food
Club are ambitious. By subscribing
for free to the monthly newsletter
we publish containing GF/CF recipes
and a sprinkling of science relevant
to dietary intervention and autism,
we hope to offer a one-stop shop
for those thinking about the GF/CF
diet and easing the often daunting
prospect of employing such an allencompassing intervention. We’re
not by the way trying to replace your
medical doctor or dietician (our advice is always going to be to include
healthcare professionals when such
an intervention is contemplated),
merely to complement the advice
that they might give and provide
access to some professional and reliable meal-time ideas. _
REFERENCES
1. Whiteley P. et al. How could a gluten- and casein-free
diet ameliorate symptoms associated with an autism
spectrum condition? Autism Insights. 2010; 2: 39-53.
2. Whitehouse AJO. & Stanley FJ. Is autism one or multiple
disorders? Med J Aust 2013; 198: 302-303.
3. Kohane IS. et al. The co-morbidity burden of children
and young adults with autism spectrum disorders.
PLoS One. 2012;7(4):e33224.
4. Herbert MR. & Buckley JA. Autism and dietary therapy:
case report and review of the literature. J Child Neurol.
2013. 28: 975-982.
5. Whiteley P. et al. Gluten- and casein-free dietary
intervention for autism spectrum conditions. Front
Hum Neurosci. 2012; 6: 344.
6. Whiteley P. et al. A gluten-free diet as an intervention
for autism and associated spectrum disorders:
preliminary findings. Autism. 1999; 3: 45-65.
7. Whiteley P. et al. The ScanBrit randomised, controlled,
single-blind study of a gluten- and casein-free dietary
intervention for children with autism spectrum
disorders. Nutr Neurosci. 2010; 13: 87-100.
Coconut rice pudding with coconut topping
Makes 4 servings
Coconut Rice
1 C (200 grams) long grain white rice
13 oz. (1 can) coconut full fat milk
2/1/4 C (500 ml) water
2 tsp. pure vanilla extract
1 tsp, cinnamon
4 T (80 grams) agave nectar
or honey
Topping
2 ½ T (40 ml) water
¼ C (50 grams) sugar
2 heaping cups (200 grams)
shredded (desiccated) coconut
1 tsp. vanilla extract
¼ tsp. salt
Method
To make the topping, bring the water to boil, add the sugar and allow to simmer
for 5 minutes stirring so all the sugar dissolves and a thick syrup begins to form.
Add the coconut, vanilla and salt and stir constantly for about 7 minutes until the
mixture is dry; set aside. In a medium saucepan, combine the rice, coconut milk
and water. Cover and bring to a boil over medium heat. Once it reaches a boil,
reduce the heat to low and simmer until all the liquid is absorbed into the rice.
Add the vanilla extract, cinnamon, and agave nectar and stir to combine. Taste
and add any extra vanilla extract or cinnamon according to taste. Serve either hot
or cold with coconut topping.
SPRINKLING OF SCIENCE
While eating the bark of a tree might not sound too appetizing, cinnamon is
one of the more flavorsome products, offering real warmth of taste to various
sweets and desserts. This spice also packs a potentially important punch when
it comes to its various health related properties, showing some quite marked
antiviral properties and possibly helping to regulate blood sugar levels.
EDUCATION SPECIAL 49
Sticky pork ribs, with baked potato and coleslaw
Makes 4 servings
For poaching the ribs:
3lbs (1.5 kg) pork spare ribs
Water, to cover
1 onion, chopped
2 garlic cloves, lightly
crushed
1 carrot
1 bay leaf (optional)
½ tsp. black peppercorns
Marinade/ Sauce
1 small onion
4 cloves garlic
1 T rapeseed oil
2 tsp. smoked paprika
2 tsp. Chinese five spice
1 tsp. cayenne pepper
1 tsp. cumin
3 T brown sugar
1 tsp. salt
2
⁄3 C (150 ml) malt vinegar
1 T tomato puree
2 T brown sauce
1 T Dijon mustard
1 tsp. dried oregano
2 limes, zest and juice
Method for ribs:
Place the ribs into a large, wide
saucepan or stockpot over a high heat.
Add enough water to cover and add
the rest of the poaching ingredients.
Bring to a boil, then reduce the heat
and simmer, covered, for 30 minutes,
then allow to cool in the water.
Method for marinade:
Blend the onion and garlic in a food
processor or blender and add to a
deep frying pan with the oil. Fry for 4-5
minutes, or until the onion and garlic have
softened. In another pan, add the smoked
paprika, Chinese five spice, cayenne
pepper, and cumin; allow the spices to
toast and release aromas; add your toasted
spices to the onion and garlic mixture,
then add the brown sugar and cook for
a further 1-2 minutes, until the sugar has
melted. Add the rest of the marinade
ingredients. Bring to a boil, then reduce
the heat and simmer for ten minutes, until
thickened. Preheat the oven to 455 F (180
C). Remove the ribs from the poaching
liquor and place onto a baking tray. Spoon
the marinade over the ribs, turning to
make sure they are completely coated.
Place into the oven to roast for 30 minutes,
or until sticky and heated through.
Remove from the oven and slice the rack
into individual ribs.
Jacket potato
4 large baking potatoes
2 T olive oil
flaked sea salt to taste
Method
Preheat the oven to 400 F (200 C). Wash
the potatoes well, dry them and prick
several times with a fork. Pour a quarter of
the olive oil into your hands and rub over
each potato, then scatter over some sea salt
which should stick to the oil. Place directly
on the rack in the oven and bake for
1¼–1½ hours, depending on the size of the
potato. When cooked, the potato should
be golden-brown and crisp on the outside
and give a little when squeezed. Serve
split open with diary free spread if desired.
50 NUTRITION SOLUTIONS
Coleslaw
1 large onion, grated
2 carrots, grated
1 small white cabbage, finely shredded
10 radishes, finely sliced
1 red pepper, deseeded and finely sliced
1 apple, grated
1 T pecans
1 T raisins
1 T grain mustard
3 T mayonnaise
Juice of one lemon
Sea salt and freshly ground black
pepper to taste
Method
Mix all the ingredients in a large bowl,
season to taste
SPRINKLING OF SCIENCE
A staple part of the “Mediterranean diet”, olive oil is a tasty
and potentially healthy alternative to other sources of fat
used in cooking preparation as well as enhancing many
dishes. A rich source of vitamin E and with numerous studies
indicating a potentially important effect on aspects of heart
health, the peppery taste of olive oil makes for a delightful
accompaniment to many dishes.
Cream of Broccoli Soup (This soup can be frozen so larger batches can be made).
Makes 4 servings
5 ¼ C (1.25 L) water
1 gluten-free stock cube or
1 T homemade bullion
1 ½ C (150 grams) blanched almond
or almond flour
Handful of fresh parsley,
finely chopped
Sea salt to taste
BIGSTOCK
2 T rapeseed or olive oil
1
⁄2 large onion, peeled and chopped
2 large stalks celery, finely chopped
4 cloves garlic, peeled and chopped
2 to 3 tsp. dried thyme
½ tsp. chopped fresh rosemary
1 tsp. freshly ground black pepper
4 ¼ C (400 grams) chopped broccoli,
stalks and tops, fresh or frozen
Method
In a large heavy based pan,
heat the oil, add the onions
and gently cook for 10
minutes or until soft. Add
garlic, thyme, rosemary
and pepper and cook for
a further 2 minutes. Add
the broccoli, homemade
bouillon or stock cube,
water, almond and parsley,
cover and simmer for 20
minutes. Blend the soup,
either with stick blender
or in a processor (you may
need to do this in batches).
Check the seasoning and
alter to taste; you might also want to
add more liquid to get a consistency
you prefer.
` NOTE: If using frozen broccoli, you may
need less water.
SPRINKLING OF SCIENCE
A member of the cabbage family,
broccoli is one of the most instantly
recognizable vegetables and makes
a colorful addition to any meal. The
flowering head of the plant and
stem provide a wealth of nutrients
including vitamin C and vitamin K.
Vitamin C, more readily associated
with oranges and other citrus fruit, is
an antioxidant; deficiency of which
can lead to scurvy, the “sailor’s
disease” noted in times gone by.
Broccoli also contains glucoraphanin
which is converted to sulforaphane,
suggested to inhibit the growth of
certain cancers, something it might
do as a consequence of its epigenetic
properties (affecting the switching on
and off of certain genes). _
WALLIS: 1 IN 64
51
A Brilliant Week
Tracking the progress of a
promising young man…
BY CAROL STOTT
B
rilliant,” said Wallis, when I
asked him about the first week
at his new school. And what a
cause for celebration it was.
I first met Wallis over three years
ago, when he and his family were
struggling to make sense of his difficulties. Wallis had very few friends;
he didn’t like school, some subjects
were too difficult. He had lots of meltdowns; times when he just couldn’t
cope. His words.
Helen, Wallis’s mum, said that
he was an intelligent boy who loved
reading and knew lots about history.
She had been worried about Wallis’s
behaviour for years; something was
wrong. She couldn’t understand why
he hated to be touched; she didn’t
know why he had no friends or why
he didn’t get invited to parties. He had
lots of melt-downs and times when he
just couldn’t cope. Her words.
Wallis was given a diagnosis of
Asperger’s Syndrome (AS) by the
BeginningwithA (BWA) team when
he was almost seven years old. His
very discrepant cognitive profile and
escalating behavior problems were
enough for us to support the family’s
application for a statutory assessment
and to request a specialist placement
outside mainstream. The local education authority (LEA) now agreed to the
assessment, and ultimately provided
a statement of need, but refused a
change of school. Wallis’s needs could
CAROL
CAR
CA
ROL SSTOTT...
TOTT
TO
TT.....
... is a Chartered Psychologist
and epidemiologist specializing in the identification and
assessment of children and
adults with autism and related
conditions, and the co-founder of BeginningwithA, (BWA), a
diagnostic training and assessment consultancy
based in Cambridge, UK.
be met in mainstream, at his current
school, they said. He left the school
soon afterwards, when it became clear
that this wasn’t really the case.
Despite the change of school
(still mainstream) and extra help in
the classroom, Wallis’s difficulties
escalated to the point that almost
everyone working with him was supporting the request for a specialist
educational placement. His parents
identified a local specialist school for
children with ASD; they met with the
head of the school, who said she considered it an appropriate placement
for Wallis and confirmed that there
was a place available for him—if the
LEA agreed. The LEA didn’t agree.
They had now placed Wallis in a
new school that was able to meet his
needs, they maintained. The school
was coping.
And perhaps it was, until the day
Wallis had to be pulled from under a
table, which led to a review of safety
procedures and additional staff training. It was a strange kind of coping.
Soon after this, the school threw in
the towel and notified the LEA that,
they too, were unable to meet Wallis’s
needs; they were not coping. More
than three years after the initial request, the LEA approved a special
placement and this week Wallis went
to his new school—a specialist school
for “high-functioning” children with
an ASD.
Today (it’s Friday) I spoke to his
mum about how things had been so
far. “Well, we had a few meetings before he went. I told them Wallis doesn’t
like to be touched; it was amazing—
they seemed to understand. I told them
he would be very anxious about the
transition; they knew he would be, and
they had already been planning for it.
It’s been really great so far.”
And when I asked Wallis what he
thought? “It’s been a brilliant week,”
he said.
Starting in the next issue, Wallis
will be writing a regular column for
Autism File magazine, where he will
be telling us, in his own words, about
his progress, his triumphs and challenges, his struggles and his victories
as he embarks on this new phase of
his life. And let’s hope there are lots
more brilliant weeks to come. _
FIND OUT MORE
You can keep an eye on Wallis’s progress on
Facebook at http://www.facebook.com/
Wallis1in64
Winter 2013/14 TV show—third in the Wallis
1 in 64 series—will be available online soon
at http://information.tv/WatchLive/
FlashPlayer/?id=1. Check on the
Wallis 1 in 64 FB page for timings.
52 RESEARCH ROUNDUP
Promising
Treatment
Potential
NAC AND AUTISM
S
everal studies in recent years
have pointed to N-acetylcysteine
(NAC) as a possibly effective treatment in reducing the sy mptoms
of autism. Perhaps best known for
its use in treating acetaminophen
(paracetamol) overdose, NAC, a glutathione precursor that has anti-oxidant effects, is also used in conditions
where cysteine and related sulfur
amino acids may be depleted. A case
report from Ahmad Ghanizadeh and
Nima Derakhshan follows the use of
NAC in treating an 8-year-old boy
diagnosed with autism.
Ghani zadeh and Derak h shan
point out that neuroinflammation and
oxidative stress are thought to play
causative roles in the development
of autism and that, “N-acetylcysteine
may provide cystine, a precursor
for glutathione (GSH), which is an
important antioxidant factor in the
brain.” The 8-year-old was given
800 mg NAC per day, initially as
part of another study to counteract
nail-biting. Not only did the nailbiting subside but after 30 days of
treatment, the parents reported a
“marked reduction” in autism symptoms. Improvements were noted in
social interactions, verbal skills and
communication, while aggressive
behaviors significantly decreased.
Additionally, the parents noted that
their son’s hyperactivity and limited interests decreased and that the
severity and frequency of an eyeblinking tic was reduced. They added
that they had not seen these kinds of
significant improvements even when
the boy was taking Risperdone, currently one of only two drugs the FDA
has approved for treatment of autism-related
symptoms.
“While the Ghanizadeh
paper is a case report and
relies on parent reporting, I do find there to be
some interesting observations here,” said Autism
File editor ial adv isor
Dr. Whiteley. “I wonder
whether the link with
nail-biting and onwards
anxiety suggested for
NAC might also be part and parcel of
the effect observed in this case given
the quite considerable link suggested
between autism and anxiety.”
` Ghanizadeh A & Derakhshan N.
N-acetylcysteine for treatment of
autism, a case report. J Res Med
Sci. 2012 Oct;17(10):985-7.
BH4: ANOTHER POTENTIAL
AUTISM TREATMENT?
T
etrahydrobiopterin, also known
as BH4, is a naturally occurring essential cofactor of the three
aromatic amino acid hydroxylase enzymes, used in the degradation of
amino acid phenylalanine. A BH4
deficiency increases blood levels
of phenylalanine which can lead
to health consequences including
seizures, movement disorders, and
behavioral problems. Researchers
at Emory University in Atlanta conducted a double-blind, placebocontrolled trial using BH4 as a potential treatment for autism in a group
of 46 children, three to seven years
of age, diagnosed with an autism
spectrum disorder. The children were
randomly given BH4 (20 mg/kg/per
STOCK.XCHNG
N-acetylcysteine, BH4, gluten sensitivity,
and more…
day) or placebo for 16 weeks.
While the researchers found no
global improvements using their primary measurements, they reported
that secondary measures indicated
significant improvements in several
areas including social awareness,
hyperactivity and speech. Side effects
in the BH4 study participants were
reported to be minimal and similar to
those in the control group.
According to Dr. Whiteley, “This
paper is important because it adds
to the already interesting evidence
base on BH4 for at least some cases of
autism. That and the quite impressive
record on few and far between side
effects of BH4 make for another interesting potential therapeutic agent.”
` Klaiman C. et al. Tetrahydrobiopterin as a
treatment for autism spectrum disorders:
a double-blind, placebo-controlled trial.
J Child Adolesc Psychopharmacol. 2013
Jun;23(5):320-8. doi: 10.1089/cap.2012.0127.
GLUTEN SENSITIVITY IN
CHILDREN WITH AUTISM
A
s parents have been pointing out for
many years, gastrointestinal issues
are frequently among the symptoms
reported to accompany an autism diagnosis. A paper published in June by
Nga Lau and colleagues investigated the
immune reactivity to gluten in a group
of children with autism compared to
asymptomatic siblings and typically
developing controls. Specifically, the
researchers looked for anti-gliadin antibodies (IgA and IgG), antibodies to
deamidated gliadin, and antibodies to
tissue transglutaminase (tTG), using serum samples from the Autism Genetic
Resource Exchange (AGRE).
The authors report that in a subset
of children with autism, there is an
increased immune reactivity to gluten that is distinct from that found in
celiac disease (an autoimmune condition classically associated with gluten),
and that, “The increased anti-gliadin
antibody response and its association
with GI symptoms points to a potential
mechanism involving immunologic
and/or intestinal permeability abnormalities in affected children.”
According to Dr. Whiteley, “There
has been quite a bit of talk in recent
years regarding non-celiac gluten sensitivity. One has to wonder whether
for some on the autism spectrum, a
similar mode of action might pertain
outside of the more classical celiac
serology and markers.”
` Lau NM. et al. Markers of Celiac Disease
and Gluten Sensitivity in Children
with Autism. PLoS ONE 8(6): e66155.
doi:10.1371/journal.pone.0066155.
EPILEPSY AND AUTISM
A
utism is often diagnosed alongside
many other conditions in the same
individual. One of these comorbidities—
that creates perhaps the greatest health
concern—is epilepsy. A new study by
Emma W. Viscidi and colleagues examines the prevalence rates of epilepsy
among children diagnosed with autism.
The findings of the populationbased study include that:
` 12.5% of children with autism aged
2—17 also have epilepsy
` 26% of children aged 13 and older
with autism also have epilepsy
Additionally, epilepsy is associated with:
` Older age
IMAGE BY KRZYSZTOF SZKURLATOWSKI; 12FRAMES.EU.
RESEARCH ROUNDUP 53
` Lower cognitive ability
` Poorer adaptive and language
functioning
` A history of developmental
regression
` More severe ASD symptoms
“There are several potentially important lessons which can be learned from
this data, not least when it comes to predicting who with autism might eventually go on to develop epilepsy,” said Dr.
Whiteley. “There are also screening and
clinical management ramifications for
this particular comorbidity, and perhaps
funding as well considering these times
of limited resources and austerity.”
` Viscidi EW. et al. Clinical Characteristics
of Children with Autism Spectrum
Disorder and Co-Occurring Epilepsy.
PLoS ONE 2013; 8(7): e67797.
doi:10.1371/journal.pone.0067797.
GUT BACTERIAL DIVERSITY
AND AUTISM
A
s frequently pointed out here and
in numerous parent reports and
published research, many children with
autism also suffer from gastrointestinal
disorders. Citing the implied link between ASD and abnormalities in gut
microbial functions, a research team
at the MIND Institute at the University
of California, Davis set out to define
systemic changes in gut microbiome
associated with autism and autism-related GI issues. Twenty children with
autism and 20 controls were recruited
for the study which then analyzed fecal
DNA samples from the study participants, comparing gut microbiomes of
the GI symptom-free group with those
from the children with autism, most of
whom presented GI symptoms.
One of the study’s main conclusions was that the asymptomatic control group “harbored more diverse gut
microbiota than the autistic group did.”
According to Dr. Whiteley,” When they
looked at the presence of GI issues related to cases of autism, there was some
hint of an effect too on gut bacterial diversity but it appeared that the severity
of autism was a more important factor
to potentially account for the microbial
differences detected.”
The researchers also found that
within the samples from the group
of children with autism, there were
significantly lower amounts of three
types of bacteria: Prevotella, Coprococcus, and Veillonellaceae, “suggesting
a potential influence of unusual diet
patterns observed in autistic children.”
` Kang D-W. et al. Reduced Incidence
of Prevotella and Other Fermenters
in Intestinal Microflora of Autistic
Children. PLoS ONE 8(7): 2013; e68322.
doi:10.1371/journal.pone.0068322. _
54
QUESTIONS & ANSWERS
Revisiting an
Old Friend
As gluten-free options at grocery stores
and restaurants continue to increase,
many families are re-discovering the
benefits of going GF...
STOCK.XCHNG
Q
KKIMBERLY
IMB
MBEERLY LINDERMAN...
LIN
IND
DER
…Kimberly’s youngest child,
Kaden, was vaccine injured at
20 months and is recovering
from “autistic-like” symptoms.
She is the co-host of Linderman
Unleashed on Natural News
Radio, and is the Marketing
Director of Autism File Magazine. _
CATHY
CATH
CA
THYY JJAMESON...
AME
MESO
SON.
…is a dual-certified teacher
with ten years’ experience in
early and elementary education. Having stepped away
from the classroom to raise
her five children, Cathy is now
a full-time mother, advocate,
and writer. When her son Ronan started to show
signs of developmental delays, Cathy embarked
on a mission to find answers, help and healing—a
mission she continues to this day. She now writes
regularly about her son, vaccine injury, and parenting a special needs child with typical siblings.
Cathy writes with the hope that sharing her
experiences might help other families in similar
situations. She is a contributing editor for Age of
Autism, has had her work featured in Pathways to
Family Wellness Magazine, and is a co-founder of
The Thinking Moms’ Revolution. _
RRUTH
UTH
UT
H E. SSNYDER,
NYDE RN...
…is a nurse specializing in high-risk
pregnancy and natural childbirth.
She is the mother of four children,
two of whom were diagnosed
with autism. Ruth is an author and
advocate dedicated to improving
the lives of those with autism. _
My family was on a
gluten-free diet several years ago because of
our son, now 11, who has
autism. We thought we
were seeing some benefits
and gradually got away
from the diet thinking
he no longer needed it.
We’ve started to see some
regression and I’d really
like to try this again. I’m
having some trouble actually going gluten-free
with so much going on
between school and therapies, etc. Do
you have any suggestions for starting
down the GF path again?
A
Everyone’s journey is different,
just like every child is different.
We implemented the GF/CF diet as the
first part of our biomed journey with
our son, Kaden, when he was three
years old. It was a game-changer when
it came to his health and behavior.
We removed gluten and casein and he
became sensitive to soy, so we removed
that too. Then he became sensitive to
everything he ate—it was a vicious
cycle and he ended up with such a
severely restricted diet that we decided
this was not the best way to work on
his sensitivities.
We decided to go organic with everything, increased his dosages of Houston Enzymes, and let him eat everything
in moderation. A new child emerged: he
started talking again for the first time
in five years. We found he lacked the
enzymes to properly digest the food
that he was eating which is why he was
so sensitive to everything we fed him.
After six years, we are on the GF
bandwagon once again with Kaden.
After doing some in-depth research on
the potential effects gluten can have
on children with autism and those
with autoimmune issues, we learned
about a disturbing farming practice.
Many farmers spray their wheat with
Round-up (glyphosate) to dry the crop
out and bring it all to maturity uniformly so they can harvest the fields
all at once. As we all know, genetically modified wheat is not approved
to be grown in the U.S. at this time,
but is nonetheless being done in some
states. Round-Up is an herbicide used
with gmo crops to kill weeds that
can strangle crops or steal nutrients
from the soil. Studies have shown that
this herbicide is causing autoimmune
issues in humans and animals, and
many believe it to be a factor in the
autism epidemic.
Upon going gluten-free again, my
husband and our son have both had
great results including:
` Less brain fog
` Daily formed bowel movements
` Less irritability (and for my
husband, less joint pain)
` More energy
` Increased expressive language
` Increased ability to handle
transitions
` Better ability to try new foods and
textures
` Less stimming (OCD traits have
also decreased)
` Better focus and attention
` A happier attitude (less tantrums,
and less need for redirection)
I purchased the book Wheat Belly
by William Davis, MD http://www.
wheatbellyblog.com/ and I highly recommend this title to anyone thinking
about going gluten-free. This has been
a life changing endeavor for our family, and according to the Wheat Belly
blog and Facebook page, thousands of
other people have benefited from going
gluten-free as well.
The abundance of GF product
companies has dramatically increased since our first gluten-free
journey several years ago. More and
more restaurants are getting on the
GF bandwagon too, offering a glutenfree section on their menus. Almost
every grocery store has a GF section
for ready-made products or frozen
meals. Additionally, shopping online
for baking goods to make your own
gluten-free meals from scratch is becoming easier and can cut your costs
dramatically.
You need to be aware that just because it says gluten-free doesn’t mean
it is a healthier alternative; read labels,
watch out for other offending ingredients such as GMOs, high fructose corn
syrup, soy and preservatives, additives
and colors. We strive for organic whenever we can; just be wary and check
the labels.
Good luck on your journey with
your child—I wish your family health
and success!
—Kimberly Linderman
Q
My son was diagnosed with autism at
the age of six and now at 12, he has
made many strides through biomedical
interventions. He knows about his diagnosis, but as my husband and I believe
he was injured by vaccines and that led
to the autism label, we have been wondering whether we should tell him about
the role the vaccines played or leave well
enough alone. Do you have any thoughts
about that?
If it were my child, I would tell
him what caused his autism. But
right now, my child still cannot speak
which I believe is a direct result of
his vaccine injury. What I wouldn’t
wish to hear my son ask me is what
caused his autism because I think
it’s important for him to know what
happened to him and why. Someday,
when he regains his voice, I hope to
do just that.
A
Brian Hoskins
QUESTIONS & ANSWERS 55
With some of the controversy that
surrounds vaccine injury, broaching
this topic with anyone, including your
son, deserves some well thought out
answers. Since there are many resources about vaccines and how they
affect one’s health, planning how you
respond can be easy.
My first thought before you delve
into this conversation is that you will
need to ask yourself a few questions:
Will your son will be able to understand that the vaccine injury played
a major role in his development including his lack of development? Will
sharing that information worry him
or cause unnecessary fears? Will he
wonder if anything is “wrong” with
him now? And, finally, will speaking
openly about this cause your son to
question you/your judgment about
having gotten the shot(s)?
If, while preparing to have this
conversation, you anticipate that
your son is able to handle all of
the information and further questions that may arise, then by all
means, giving him this information
is a good idea. It might help him
better understand why things may
have been difficult for him in the
past. It may also give him insight
as to why you’ve worked so hard for
his future.
Being truthful about the cause of
our son’s autism can be beneficial
not only at the moment he learns of
the role vaccines played in his past,
but can also help prepare him for
situations he will face as an adult.
Knowing the facts about vaccines
and how they negatively affected
him, may help him begin to build
knowledge about his health and
about specific medical choices he
will later make when he is on his
own and living independently.
Should this be the time that you
sit down and have this important
discussion with your child, and if you
need to read more about vaccines,
some helpful sites to bookmark and
refer to are: http://drtenpenny.com/
and http://www.nvic.org/.
—Cathy Jameson
Q
Since before my child was diagnosed with autism, I have often
found myself apologizing for his “bad”
or “inappropriate” behaviors. I even
apologize to people who shouldn’t need
an apology: teachers, care providers,
and other adults who are part of our
community or family. Do you have sug-
56 QUESTIONS & ANSWERS
gestions for handling these situations
besides making these automatic but
unwarranted apologies?
A
As a health care professional, I
have seen a shift in the way the
industry treats people; as a parent,
the educational system; as a consumer, the marketing and business
industry; and as a member of society, our social norms and standards.
In health care, some states are now
passing laws allowing health care
professionals to express sincere
apologies, without admitting guilt,
resulting in fewer law suits. It also
allows the caring aspect back into
health care. As individuals, we can
get to the same state of mind.
As a parent with autism myself,
I’m passionate about the positive
aspects of autism. I found myself
at one point going to that defensive other extreme, missing the
real goals of teaching and reaching.
Then, however, no longer feeling the
need to apologize, or be defensive,
I began to use the opportunity to
teach others about autism. In time,
I was finding myself able to give the
judgmental observer or professional,
family member, or friend, a business card explaining what autism is
and how the myriad symptoms of
the disorder can manifest. To me,
this felt better and more appropriate than saying “I’m sorry” every
time there was an issue. Talk About
Curing Autism (TACA) has similar
cards available on their website, and
for situations involving safety, Dennis Debbaudt has “Autism Risk and
Safety” cards available on his website
designed for law enforcement and
first responder field use. (See Find
Out More below.)
What I found, as my children with
autism began to get older, is that by
apologizing too often and too easily,
not only is sincerity lost, but a heavy
burden is placed on the kids, who may
interpret my apology as an expression
of shame. That’s a burden they don’t
need to carry through life. Instead, I
have to learn and teach them too.
b
The simple words
“I am sorry”
have as much—
if not more—power
than the other three
words parents want
to hear from their
child with autism:
“I love you.”
a
The simple words “I am sorry”
have as much—if not more—power
than the other three words parents
want to hear from their child with
autism: “I love you.” It seems that
many people have been conditioned
to either say it without meaning it, or
mean it without saying it. Learning
and teaching these concepts is hard
work for anyone, but once the neurological aspects are understood by at
least one advocate, an individual with
autism can learn to better handle the
emotional challenges and social situations life presents.
—Ruth Snyder _
FIND OUT MORE
` TACA’s “My Child has Autism” cards
https://www.tacanow.org/store/MyChild-Has-Autism-Cards-100/`
` Dennis Debbaudt’s Safety Cards
http://www.debbaudtlegacy.com/
autism_on_scene_response_cards.cfm
SPECTRUM MUMMY 57
Close Encounters
Why is it that the last person you want to see bumps
into you at the worst possible time?
BY MAE FROST
MAE
M
AE FFROST...
ROS
OSTT......
…is mom to two fabulous
children, one of whom has
autism. She has dim and
distant memories of wearing a
suit, working in management
and having things like coffee
and lunch breaks. These days,
she mostly spends her time running in pursuit,
and clearing up. But in between, she writes, runs a
small online store importing clothing for children
with sensory processing disorders, and is a trustee
for a charity. _
get away and making implausible
excuses for looking like something
in a circular email about dreadfully
dressed WalMart shoppers. But she
has me in her claws, delight is in her
eyes and she has plenty to discuss.
Finally, I find a good enough excuse
to get away (trying to sashay but
In the old days, such an event
might have spurred me towards a
gym, a healthier eating plan, and
getting my life together. But now,
if I pack in 10 hours a week at the
gym, like an overstuffed suitcase,
something else will pop out—something vital, definitely more important than me trying to look like
Heidi Klum in a bikini. And we
don’t really have anything left in
our house that isn’t healthy, so
there’s nothing to ceremonially
chuck out and ban. I could try
starvation so I can fit in more of
my clothes, but that will make
me gr umpy— and since I am
the cheerleader in this particular household, that wouldn’t do
at all.
A s for a backpacking tr ip
through the Amazon, or a month
on a whale-watching project, or
something else suitably windswept and interesting: To be
honest, my life never has a dull
moment. I could really use two
months in a dark room with a
comfy bed and room service,
not seeing anything interesting
at all—now that would make a
nice change.
Also, I have all these bills to
pay for things my kid needs that
should just happen but don’t because
all the people who are supposed to
be meeting his needs are instead
devoting their attention to creating
paper trails that make it LOOK like
they are meeting his needs. So I’m
not spending a penny on anything
that isn’t vital with a capital “V”.
I have no words of wisdom and
I’m not suggesting you ever go out
looking like I recently did. But if
anything even remotely similar happens to you, just know you are not
alone. And keep your fingers crossed
we don’t end up on one of those
email circulars... _
Getty Images/Hemera
T
here are certain people in life,
who, should you happen to
bump into them, you want
to do so only on a “best” day: just
back from an exotic holiday with a
great tan, or with a fabulous story
to share.
Perhaps you once fell out with
them with over something you
don’t even remember now: Exboyfriends, or the girlfriends/
wives of an Ex. Or perhaps that
Alpha mum who used to belittle
you every day at the school gates.
If I was ever to bump into
such a person, it was going to be
the day that I remembered at the
last minute about putting out
the rubbish and went bounding
up the road with a bin-bag in
each hand. With puffy-sleepless-night-eyes, hair like stuffing from a burst mattress, a tee
shirt with grease splats down
the front, cellulite enhancing
white leggings (a bad buying decision only used as PJs because
I wouldn’t want to be seen dead
in them—but who can afford to
just throw these things away?).
Oh, and let’s not forget the grubby flip flops, and a “Spongebob
Squarepants” plaster on my big
toe because no others are allowed in
the house. It’s definitely going to be
this day, isn’t it?
Cue polite conversation in a garbled, high-pitched voice while taking small steps backwards trying to
stumbling while pulling tee down
over big bum).
Once home, I catch sight in the
mirror, noticing all the extra things
like the mascara splodged-eyes, then
cringe while remembering all the
nonsense I said while trying to get
away. All the excruciating little details replay in my mind. Then, here
came the hysterical laughter at the
ridiculous bad luck of it, and perhaps a little self-indulgent sobbing
at what life has come to.
I realize all parents have these moments, but seemingly you get rather
more of them over a much longer term
when you’re a spectrum mummy.
IT’S SAID THAT ON
AN AVERAGE DAY,
A PERSON CAN SPEAK
16,000 WORDS.
I’D GIVE ANYTHING IF
MY CHILD COULD SPEAK
JUST ONE.
- an autism mom
Introducing Give A Voice, a new program from the National
Autism Association that provides communication devices to
individuals with autism who are non-verbal or minimally
verbal, and whose communication challenges put them at
increased risk of injury or harm.
TO DONATE OR LEARN MORE, VISIT NATIONALAUTISM.ORG.