FAASTimes - UM-CARD

University of MiamiNova Southeastern
University Center for
Autism & Related
Disabilities
(UM-NSU CARD)
FA A S Ti m e s
Family
Times
Autism/Asperger
Spectrum
Spring 2012
E d i t o r ’s C o r n e r
Dr. Diane Adreon
Inside this Issue
The
Psychological
Perspective
I am often in awe of the varied talents of children and adults with
ASD. This painting, Fire under Water, is by a young woman with ASD
from Miami.
2-3
Beyond IQ:
Ketty Patiño
González, Ph.D.
Voices from
Within: An
Insider’s
Perspective on
ASD
4-6
Preventing
Meltdowns
Judy Endow,
MSW
Books on ASD &
Related Issues
OCD
Stress
Management
7-8
Explaining
Illness & Death
An Advocate’s
Advice
Can Your Child
be Arrested at
School?
Stephanie Langer,
Esq.
911
Her inspiration comes from “the words of Vincent Van Gogh and
Salvador Dali, works that are dramatic and emotional leave profound
impressions…”
As you can see, Luisa is a very talented artist. You can see more of her
work at www.luisapulido.com (Luisa’s email is
meinestudio@yahoo.com)
FAASTimes
Beyond the IQ
Page 2
Ketty Patiño González, Ph.D.
A distinction has traditionally been made between children with an autism spectrum
disorder: those with IQ scores below a standard score of 70 (“low functioning” or
“classic autism”) and those with IQ scores of 70 or above (“high functioning”). This
dichotomy was made to try to distinguish children who, in addition to having autism
characteristics, are functioning in what has been called the “mentally retarded”
range from those who are not. Unfortunately, this distinction is artificial and
sometimes can even hurt the child and the child’s family, as expectations may be too
low for some and too high for others. During the series that starts with this issue, I
will attempt to elucidate what IQ really is, how IQ scores are computed, what
abilities are needed to learn effectively, and what else, beyond IQ, affects a child’s
acquisition of knowledge and his or her ability to reach their potential.
As parents, one of the first things we look at when we take our child in for an
evaluation is his or her IQ score. What is sometimes not correctly explained to us is
what an IQ score is. An IQ score is a conglomeration of different subtests that more
or less averages out to what is termed a “Full Scale IQ” (i.e., FSIQ) or what is other
times called “General Conceptual Abilities” score, or something similar. However,
the FSIQ may be the average of very dissimilar numbers and may prove worthless as a
representation of our child’s estimated cognitive abilities. Let me give you an
example: A child may obtain an FSIQ of 90, which is in the “Average” range and in
the 25th percentile. That sounds like a solid IQ; however, that FSIQ may be the
average of very different numbers. If we are dealing with the Wechsler Intelligence
Scale for Children (WISC-IV), the best known and most utilized test of IQ, that FSIQ
score is made up of four different indexes, or summary scores: Verbal Comprehension
(how we use and reason with language), Perceptual Organization (visual processes
and how we reason with new information), Working Memory (how we keep
information in our minds while we process it), and Processing Speed (how quickly we
can perform rote tasks). If the child obtained scores in all four scales that are
between, say, 85 and 95, then we can absolutely say that the FSIQ of 90 is
representing his overall estimated cognitive abilities at this time. However, if he
obtained scores of 60, 100, 85, and 115 (which average to 90) the FSIQ does not
come close to giving you any useful information.
Let us put aside the Working Memory and Processing Speed Indexes for now and
concentrate on the two indexes that are considered to best represent what we think
of as “intelligence”: the Verbal Comprehension and Perceptual Reasoning indexes.
One finding that is very common in children with autism is that they will have much
lower Verbal Comprehension scores than Perceptual Reasoning scores. In essence,
the child is much better processing information visually than verbally.
FAASTimes
Page 3
Beyond the IQ (cont’d)
For example, I have seen many children with autism with Verbal Comprehension
scores of 70 (2nd percentile) and Perceptual Reasoning scores of 110 (75th percentile).
Although this child’s FSIQ may be in the “average” range, her ability to process
information verbally is in the second percentile. This means that 98 percent of
children her age can process language much better than she can. This, in turn,
means that she will undoubtedly get in trouble in school, as traditional academic
teaching requires a high degree of verbal abilities to be effective, but much less
visual processing abilities.
We may also see the reverse, particularly in children with Asperger’s Syndrome. In
essence, there is a large group of children with Asperger’s who have a very high
Verbal Comprehension score (say 130, in the 98th percentile) and a relatively low
Perceptual Reasoning score (say 85, in the 16th percentile). This child will very likely
learn in school very well in the lower grades. However, when he gets to the higher
elementary grades and above, he may start to get in trouble academically, as visual
and reasoning abilities become much more important for success in higher grades.
In summary, always go beyond the global IQ score. Look at the scores that make it up
and ask the psychologist or educator about the implications of your child’s particular
range of index scores. This will help you to be ready for the unique challenges that
academics may present to your child. Furthermore, keep in mind that an IQ score is
only a component of what children need to have in place to learn in school. In fact,
research shows that only about 50% of a student’s learning is explained by IQ. Future
columns will go into more detail about the different abilities needed to learn
different subject matters (e.g., reading and math) and about other issues that many
times we do not consider when thinking about how to get our children ready for the
real world. As I always say to the parents of children I evaluate, as your child grows
she (and you) will be facing new challenges. Being prepared for the challenges, and
even anticipating them, will help you help them. The day your child with an autism
spectrum disorder was born you started to run a marathon. I will try to help you a
little with your training.
Dr. Ketty Patiño González is a licensed clinical psychologist in Miami, Florida. She is also the mother
of a profoundly handicapped adult daughter. Dr. Patiño González worked in various capacities at the
University of Miami since 1995 until June 2007, when she decided to dedicate all her time to private
practice. During her stay at the University of Miami, seeing a need in the community, five years ago
she established the Autism Spectrum Assessment Clinic (ASAC) to evaluate children who might be in
the autism spectrum. Dr. Patiño González is married and has four children and four grandchildren
(and twins on the way). She has presented locally, nationally, and internationally on autism,
Asperger’s Syndrome, Attention Deficit Hyperactivity Disorder (ADHD), learning disabilities, and
psychoeducational evaluations. Her practice is solely dedicated to assessments. You can reach her at
kettypgonzalez@gmail.com.
FAASTimes
Page 4
Preventing Meltdowns:
Outsmarting the Explosive Behavior of Individuals with ASD
Judy Endow, MSW
Meltdown behavior is quite common for those with Autism Spectrum Disorders. And,
indeed, the most frequently asked question by parents and educators is: “What do I
do when my child has meltdowns?”
When the meltdown is occurring, the best reaction is to ensure the safety of all concerned. Know that explosive behavior is not planned but instead is most often caused
by subtle and perplexing triggers. When the behavior happens, everyone in its path
feels pain, especially the child.
Stages of Explosive Behavior
So, what exactly is explosive behavior? In my book Outsmarting Explosive Behavior:
A Visual System of Support and Intervention for Individuals with Autism Spectrum Disorders (Endow, 2009), explosive behavior is defined as having four distinct
stages, followed by a clearly defined recovery period. In addition, the physiological
fight/flight mechanism is triggered immediately prior to the explosion.
In this model, the four stages of explosive behavior are the same for all experiencing
explosive behavior and are depicted by four train cars called Starting Out, Picking Up
Steam, Point of No Return and Explosion. The idea is to try to prevent the train cars
from hooking up, because when they do, we have a runaway train that ends in explosion.
Working backwards, the Explosion is the stage where the meltdown behavior is evident. Immediately prior to this is the Point of No Return, which is exactly what it implies—there is no going back from the meltdown because this stage is where the
fight/flight response is triggered. The pupils dilate, and breathing and heart rates
increase. Physiologically, our bodies respond as if our very lives are at stake, and we
automatically behave accordingly: We fight for our lives. It is entirely impossible to
reason with anyone in this survival mode. As soon as you see the child’s identified
Point of No Return behavior, you can know the Explosion is coming and need to do
your best to quickly create and maintain a safe environment.
FAASTimes
Page 5
Preventing Meltdowns (cont’d)
The place to impact explosive behavior is ahead of when it occurs. In the Starting
Out phase, whispers of behaviors are evident. The Picking Up Steam phase is just
that—the whispers become louder. Though you can learn to successfully intervene at
these stages, the most effective way to manage explosive behavior is proactively,
before the whispers even start.
Strategies to Prevent Meltdowns Before They Start
An individual mix of three major supports and interventions is usually most effective
in preventing the first stage of meltdown behavior from starting. These three major
supports include proactive use of a sensory diet to maintain optimal sensory
regulation, visual supports and managing emotions that are too big (Endow, 2011).
People with AS usually do not have sensory systems that automatically regulate;
instead, they must discover how to keep themselves regulated. This is most often
accomplished by employing a sensory diet. A sensory diet for a person with autism is
like insulin for a person with diabetes. It is easy to understand that a person with
diabetes has a pancreas that is unable to regulate insulin effectively. We can
measure blood sugar and know the exact state of affairs, and from there figure out
how much insulin the person needs.
Sensory Diet: Unfortunately, medical science does not allow us to take a blood
sample to measure sensory dysregulation. However, we can figure out and employ a
sensory diet to prevent dysregulation, and just like insulin prevents serious
consequences for a diabetic, a sensory diet prevents serious troubles for an
individual with ASD. As an adult with autism, I spend time every day on sensory
integration activities in order to be able to function well in my everyday life. A
sensory diet employed proactively goes a long way in preventing the Starting Out
stage of explosive behavior from ever occurring (Brack, 2004).
Visual Supports: Another crucial area of support to put in place proactively is that of
visual supports. As an autistic, I can tell you the saying “A picture is worth a
thousand words” is the monumental truth. Although each person with ASD has a
unique experience, processing written and spoken words is not considered by most of
us to be our “first language.”
FAASTimes
Page 6
Preventing Meltdowns (cont’d)
For me, the meaning I get from spoken words can drop out entirely when I am under
stress, my sensory system is dysregulated or my felt emotions are too big. Visual
supports can be anything that shows rather than tells. Visual schedules are very
commonly used successfully with many individuals with ASD. Having a clear way to
show beginnings and endings to the activities depicted on the visual schedule can
support smooth transitions, thus keeping a meltdown at bay. For maximum
effectiveness, visual supports need to be in place proactively rather than waiting until
behavior unravels to pull them out.
Managing Felt Emotions: A third area in which many with ASD need proactive support
is in managing felt emotions. Most often, felt feelings are way too big for the
situation. An example in my life is when I discover the grocery store is out of a
specific item; I get a visceral reaction very similar to the horror I felt when first
hearing about the 9/11 tragedy. I know cognitively the two events have no comparison
and, yet, my visceral reaction is present and I need to consciously bring my too big
feelings down to something more workable in the immediate situation. Managing felt
emotions does not come automatically, but can be learned over time with systematic
instruction and visual supports such as The Incredible 5-Point Scale (Buron & Curtis,
2004).
The good news is that explosive behavior can be positively impacted. With proactive
supports, explosive behavior can be outsmarted so individuals with ASD can move on
to living purposeful and self-fulfilling lives.
References
Brack, J.C. (2004). Learn to Move, Move to Learn! Sensorimotor Early Childhood Activity Themes. Shawnee Mission,
KS: Autism Asperger Publishing Company.
Buron, K.D., & Curtis, M. (2004). The Incredible 5-Point Scale. Shawnee Mission, KS: Autism Asperger Publishing
Company.
Endow, J. (2009). Outsmarting Explosive Behavior: A Visual System of Support and Intervention for Individuals with
Autism Spectrum Disorders. Shawnee Mission, KS: Autism Asperger Publishing Company.
Endow, J. (2011). Practical Solutions for Stabilizing Students With Classic Autism: Getting to Go. Shawnee Mission,
KS: Autism Asperger Publishing Company.
First printed on Education.com with permission of the Autism Society.
http://www.education.com/reference/article/explosive-behavior-asperger-syndrome/
Judy Endow, MSW maintains a private practice in Madison, WI providing consultation for families, school
districts and other agencies. Besides having autism herself, she is the parent of a son on the autism
spectrum. Judy does workshops and presentations on a variety of autism related issues, is part of the
Wisconsin DPI Statewide Autism Training Team and a board member of Autism Society of Wisconsin. Judy has authored several books including award winning Paper Words, Discovering and Living with My Autism (2009 AAPC) which won the 2010 International Book Awards Finalist in Autobiography/Memoirs. Her
DVD The Power of Words: How we talk about people with autism spectrum disorders matters! (2009
AAPC) won the 2010 Autism Society Award for Excellence in Media. Judy brings a great depth of understanding and compassion to all the work she does. For additional works by Judy please visit Autism Asperger Publishing Company at www.aapcpublishing.net
FAASTimes
Page 7
Books on ASD & Related Issues
Blink, Blink, Clop, Clop
An OCD Storybook by Katia Mortiz
Obsessive Compulsive Disorder (OCD) is not an easy concept to explain
to young children. Blink, Blink, Clop, Clop was written to give parents
and professionals an entry into talking with children about OCD, a
complex and usually progressive neurobiological disorder.
Children can relate their own experiences to those of Henrietta, Daisy,
Snort, and Biscuit, a group of farm animals who have obsessive
thoughts and compulsions that turn out to be caused by a bullying and
mischievous insect named O.C. Flea. Blink, Blink, Clop, Clop can help
children begin the important journey to understanding their own
symptoms and empower them to face their OCD just like the brave
animals did. Weston Press: Weston, FL
Totally Chill: My Complete Guide to Staying Cool
A Stress Management Workbook for Kids with Social, Emotional,
or Sensory Sensitivities by Christopher Lynch, PhD
It is crucial that children learn and develop skills to help them to manage
their stress as independently as possible. Totally Chill: The Complete Guide
to Staying Cool is a stress management workbook that is meant to be read,
completed, and used as much as possible by children themselves.
The graphics and interactive style of this publication make it ideal for
children grades 3 through middle school. Everyone feels stress – adults and
children alike. It’s part of life. But life can be a lot easier when we learn
new skills and ideas to help us handle the stress in our lives. Autism Asperger
Publishing: Shawnee Mission, KS
FAASTimes
Page 8
Book on ASD & Related Issues
Life in Asperger Lane by Dan Coutler
For years, support groups in the United States, Canada and Australia
have used Dan Coulter's articles to improve life for people with Asperger
Syndrome and their families. This book collects Dan's first 70 articles.
Spurred by his son's diagnosis with Asperger Syndrome, Dan used his
skills as a successful television writer/producer/director and public
relations executive to become a leading Asperger advocate.
His articles include insights from his own family life, from the varied
people he's interviewed to produce DVDs about Asperger Syndrome, and
from input from Asperger and autism experts who consult on his videos.
This book includes the best practices Dan has gathered for people with
Asperger Syndrome and for their parents, teachers, counselors and
other supporters. With warmth and humor, Dan focuses on positive,
practical steps that have worked for a wide range of individuals and
families. Coulter Video, Inc.: Winston-Salem, NC.
Understanding Death and Illness and
What They Teach About Life
An Interactive Guide for Individuals with Autism or Asperger's
and their Loved Ones by Catherine Faherty
Understanding Death and Illness and What They Teach About Life
provides an excellent way for parents and professionals alike to
explain to children and adults with autism difficult moments in life
like the death or illness of someone they know. Faherty explains, in
depth, how to use this resource.
The chapters cover areas such as illness and injury, recuperating and
healing, death, communication, what happens when someone dies,
putting your pet to sleep, the rituals and traditions that people
follow when someone has died, and much more. The issues in the
book are explained in very simple ways making it easier for everyone
to understand. Future Horizons: Arlington, TX.
FAASTimes
Page 9
C a n Yo u r C h i l d b e A r r e s t e d a t S c h o o l ?
B y S t e p h a n i e L a n g e r, E s q .
Did you know that if your child commits a crime at school he/she can and most likely
will be arrested? Did you know that your child will be charged with a felony if he/
she hits a teacher or other school employee? Did you know that the reverse is not
true? Parents need to know that there are little, if any, protections for children who
hit while in school.
If your child is arrested, he/she will be fingerprinted and photographed. The
fingerprints will be submitted to the Florida Department of Law Enforcement
Database & the FBI Database. An arrest cannot be sealed or expunged from the FBI
database. Your child can be and probably will be questioned by the police,
especially the school board police, without a parent being notified or present. If
your child is found guilty or convicted of a felony, he/she may be automatically
suspended from school. Your child will have to provide a DNA sample to be held in
the state’s DNA database and cannot live or visit anyone who lives in public or
Section 8 housing.
There are many reasons children act out in school. But for many children with an
Autism Spectrum Disorder, their actions may not be intentional or malicious. For
children with disabilities who are non verbal or have overwhelming sensory issues,
the only way they can express themselves is through their physical movements.
Many children with disabilities have behavior and/or sensory issues that result in the
child lashing out in an aggressive manner by biting, spitting, hitting, kicking or
throwing things when they become frustrated, overwhelmed or simply because they
do not get what they want at that moment.
Criminal laws do not take into account a child’s disability or the fact that a physical
act of aggression may only be a manifestation of that child’s disability. What
parents need to know, however, is that in criminal law, a person has to know and
understand what they are doing, mens rea, to be held accountable for their actions.
Further, intent is a necessary element of battery. For example in the case of C.B.
v. State, 810 So.2d 1072 (Fla. 4th DCA March 20, 2002), a student was asked to hand
a lighter to a teacher, rather than hand over the lighter, the student threw the
lighter and it hit the teacher. The Court found that the student did not intend to hit
the teacher and therefore could not be charged with battery.
Teachers and schools are becoming overwhelmed with students who have behavior
issues because they are not getting the necessary training and resources to assist
them in properly addressing behavior issues when they first manifest. As a result
schools and teachers are turning more quickly to the criminal justice system to
punish and ultimately remove the problem children from that school.
FAASTimes
Page 10
C a n Yo u r C h i l d b e A r r e s t e d ( c o n t ’ d )
A prime example of this growing trend is the recent reporting of an 8 year old
student with ADHD being arrested fives times in four months for throwing things,
spitting and hitting while at school in Orange County, Florida. In September 2011,
Broward County, Florida, after having a student arrested for battery, the teacher
was also able to obtain a restraining order against the student resulting in the
student being kicked out of the school.
The Florida legislature, in 1996, found that because of the mandatory attendance
laws, which require children to attend school until the age of 16, teachers and
educators were vulnerable to violent crimes by juvenile offenders. The law was
passed to protect the safety and welfare of educators and to deter classroom
violence against teachers and other educators by enhancing the penalties for assaults
and batteries committed against educators.
October 1, 1996, Florida law reclassified the crime of battery from a misdemeanor to
a felony when the battery is committed upon a teacher or other school employee.
This law applies to not just teachers, but to any employee within the school system.
This law also applies to teachers and employees of private schools.
What parents need to know is that the law does not take into account why the
student hit the teacher. Once a student hits a teacher they can be arrested and
criminally charged with a third degree felony. The student will be facing up to five
years in prison and a $5,000 fine. The teacher does not have to suffer any injuries
for the child to be arrested. In Florida, a battery is defined as the actual and
intentional touching or striking of another person against their will; no injury is
required. If, however, a teacher hits a student they are only charged with simple
battery, which is a first degree misdemeanor that carries a penalty of less than one
year in prison and a $1,000 fine.
What can parents do? Parents need to educate both the court and the lawyers about
their child’s disability and how it manifests itself. Parents need to present to the
court all the surrounding facts and circumstances regarding why the child might have
hit the teacher. If the teachers are not properly trained to address your child’s
behavioral needs, educate the court and the lawyers on what type of training is
required. If there are positive interventions that work, but the school is not utilizing
or implementing such interventions, educate the court and the lawyers that the
hitting could have been avoided with a different approach by the school. Do not be
afraid to argue that the school created the situation and so, the child should not be
held accountable by a criminal court for his/her actions. I am not suggesting that
children should not be held accountable for their actions, I am however, stating that
the criminal court may not always be the proper forum to address behaviors that are
a manifestation of someone’s disability.
FAASTimes
Page 11
C a n Yo u r C h i l d b e A r r e s t e d ( c o n t ’ d )
What can parents do at school to prevent their child from being arrested? Parents
can be better informed, ask more questions and attempt to hold the schools and
teachers accountable for their actions and inactions. For example, parents should
request a copy of the District’s policy on the use of restraints before consenting to
the same. What parents need to know is that their consent to restrain a child can
be limited. Parents can and should specify under what circumstances restraining
may be used. Parents can restrict who is permitted to restrain the child and what
type of restraints can be used. Parents should require that they be notified any
time restraints are used. Parents should also require positive interventions and
strategies to be put into place and require that staff be properly trained in how to
implement the positive interventions and strategies. Parents should not be afraid to
ask for the interventions to be updated or changed if they are not successful or for
updated evaluations to determine what the child needs. If the parents have the
option to move a child, the parents should not be afraid to ask for a new teacher or
aide to work with their child.
Parents should also know that the principal of each school has the ultimate authority
and discretion when implementing disciplinary action against a student at their
school. Make sure the principal is educated about your child and his/her disability.
Parents should know that all schools have a punitive discipline system, sometimes
called a zero tolerance policy, which all students are required to follow, including
students with disabilities. The only limit imposed for students with disabilities is
that the school may not exclude (suspend) a child with a disability from their
education for over ten days without according the child some due process rights,
such as a manifestation determination, an examination of the IEP and possible
amendment to address the behavior issues or provide a functional behavior
assessment (FBA) or review of the behavior intervention plan (BIP).
It is important to know your rights and the rights of your child so that you and your
child can become strong self advocates. The best way to avoid an arrest in school is
to become informed, ask questions and be vigilant in protecting your rights and the
rights of your children. Knowledge is power.
Stephanie Langer, Esq., Southern Poverty Law Center, Miami, FL
Stephanie.Langer@splcenter.org
References:
Beard v. State, 842 So.2d 174 (2nd DCA 2003).
Orlandosentinel.com (2-25-2011).1996 Fl. ALS 293
Fla. Stat. § 784.081(2) (2011). Fla. Stat. §§ 775.082; 775.083 (2011).
Fla. Stat. § 784.03(1) (2011). Fla. Stat. §§ 784.03(1); 775.082; 775.083 (2011).
We are on the Web!
www.umcard.org
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UM-NSU CARD
Dr. Diane Adreon, Editor
5665 Ponce de Leon Blvd
PO Box 248768
Coral Gables, FL 33124-0725
305-284-6556
800-9-AUTISM ext.1
dadreon@miami.edu
Do you have an original article addressing issues of interest to families of individuals with
autism spectrum disorders (ASD) that you are interested in sharing with others? Are you
someone on the spectrum that would like to give insight into the world of ASD from your
own perspective? Do you or your have a creative side and would like to see your artwork
published? If so, please send us your work and it may be premiered in our next issue of
FAASTimes!
CARD is a state-funded resource and support program dedicated to improving the lives of
individuals with autism and related disabilities including deaf-blindness and pervasive
developmental disorders. CARD does not endorse specific programs or points of view
presented in this newsletter.