Autism Speaks
First 100 Days Kit
A tool kit to assist families in getting the
critical information they need in the first 100
days after an autism diagnosis.
Autism Speaks
Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides
general information about autism as a service to the community. The information provided in this kit is not a
recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not
replace the advice of medical, legal or educational professionals. This kit is not intended as a tool for verifying
the credentials, qualifications, or abilities of any organization, product or professional. Autism Speaks has not
validated and is not responsible for any information or services provided by third parties. You are urged to use
independent judgment and request references when considering any resource associated with the provision of
services related to autism.
© 2008 Autism Speaks Inc. Autism Speaks and Autism Speaks It's Time To Listen & Design are trademarks owned by Autism Speaks
Inc. All rights reserved.
About this Kit... Raun Melmed, M.D.
Director, Melmed Center
Autism Speaks would like to extend special thanks to
Medical Director, SARRC
the Parent Advisory Committee for the time and effort Ricki Robinson, M.D., MPH
that they put into reviewing the 100 Day Kit.
USC Keck School of Medicine
100 Day Kit
Sarah J. Spence M.D., Ph.D.
Parent Advisory Committee
Staff Clinician
Pediatrics and Developmental Neuropsychiatry Branch
National Institute of Mental Health
Stacy Crowe
Rodney Goodman
Carole Samango-Sprouse, Ed.D.
Beth Hawes
Director, Neurodevelopmental Diagnostic Center for
Deborah Hilibrand
Young Children, Associate Clinical Professor in the
Stacy Karger
Department of Pediatrics at George Washington University,
Marjorie Madfis
Wendy Stone, Ph.D.
Judith Ursitti
Vanderbilt Kennedy Center
Marcy Wenning
Treatment and Research Institute for Autism Spectrum
Disorders
With gratitude, we thank the 100 Day Kit Professional
Advisory Committee for generously donating their
time and experience to this project.
Family Services
100 Day Kit
Committee Members
Professional Advisory Committee Liz Bell
Parent
Geraldine Dawson, Ph.D.
Chief Science Officer, Autism Speaks
Sallie Bernard
Parent, Executive Director, SafeMinds
Robin L. Hansen, M.D.
Director, University Center for Excellence in Developmental Michele Pierce Burns
Disabilities
Parent, Director of Development, Celebrate The Children
Director of Clinical Programs
School
M.I.N.D. Institute/U.C.Davis
Farah Chapes
Susan Hyman, M.D.
Chief Administrative Officer, The Marcus Institute
University of Rochester School of Medicine and Dentistry
Strong Center for Developmental Disabilities
Andrew Conrad, Ph.D.*
Chief Scientific Officer, Co-founder, LabCorp's National
Connie Kasari, Ph.D.
Genetics Institute
Professor of Psychological Studies in Education
UCLA Graduate School of Education and Information Sciences
Peter F. Gerhardt, Ed.D
Ami Klin, Ph.D.
President, Organization for Autism Research (OAR)
Yale University, School of Medicine
Child Study Center
Susan Hyman, M.D.
Strong Center for Developmental Disabilities
Lynn Kern Koegel, Ph.D.
Clinical Director, Koegel Autism Center
Brian Kelly * **
University of California, Santa Barbara
Parent
Principal, Eastern Development
Robert L. Koegel, Ph.D.
Professor of Clinical Psychology and Special Education
Gary S. Mayerson*
Director, Koegel Autism Center
Founding Attorney, Mayerson & Associates
University of California, Santa Barbara
Kevin Murray*
primary research interests are in early identification and
Parent
early intervention for children with Autism Spectrum
Chief Operating Officer, Rock Ridge Associates
Disorders.
Linda Meyer, Ed.D
Theresa Foy DiGeronimo, MEd is the coauthor
Executive Director, The New Jersey Center for Outreach and of How to Talk to Your Kids About Really Important Things,
Services for the Autism Community (COSAC)
Launching Our Black Children for Success, College of the
Overwhelmed, and other books for Jossey-Bass.
Denise D. Resnik
Parent, Co-Founder and Board Chairman, Southwest Au-
tism Research and Resource Center (SARRC)
Kathryn Smerling, PhD is an educator and
psychologist with advanced degrees in both disciplines.
Michelle Smigel
She maintains a private practice in Manhattan, specializing
Parent
in family dynamics and child development process. She
holds a Ph.D. , an M.S.W., and an M.A. and graduated from
Lilly Tartikoff*
both the Extern Program at Ackerman Institute for the
Philanthropist
Family, and the National Institute for Psychotherapies
(NIP). Random House has published forty texts by Dr.
Kim Wolf
Smerling in both Spanish and English for use in the early
Parent
childhood classroom by supervisors, teachers, parents and
paraprofessionals.
*Autism Speaks board member
**Chairperson – Family Services Committee
Ellen Notbohm is author of Ten Things Every Child
Parent – indicates a parent of a child with autism
with Autism Wishes You Knew and Ten Things Your Student
with Autism Wishes You Knew, both ForeWord Book of
the Year finalists and iParenting Media Award recipients
About the
and, most recently, The Autism Trail Guide: Postcards from
the Road Less Traveled. She is also coauthor of the award-
winning 1001 Great Ideas for Teaching and Raising Children
with Autism Spectrum Disorders, a columnist for Autism
Contributors... Asperger’s Digest and Children’s Voice, and a contributor to
numerous publications and web sites around the world.
The Autism Speaks First 100 Days Kit was edited by:
Lynn Kern Koegel, PhD is one of the world’s foremost Mather Media
experts on the treatment of autism. She and her husband
founded the renowned Autism Research Center at the
Graduate School of Education at the University of California,
Santa Barbara, where she is currently the clinical director.
She holds a Ph.D. in educational psychology and an M.A.
in speech and hearing sciences. She lectures frequently at
universities, conferences, schools, and parent organizations.
Claire LaZebnik is the author of the novel Same As It
Never Was and has written for GQ, Cosmopolitan, and Vogue.
Ms. LaZebnik is coauthor of the book Overcoming Autism. A
graduate of Harvard University, she lives with her TV writer
husband and four children, one of whom has autism, in
Pacific Palisades, California.
Wendy L. Stone, PhD is a professor of pediatrics
and psychology and human development at Vanderbilt
University and an investigator at the Vanderbilt Kennedy
Center for Research on Human Development. She founded
and directs the Vanderbilt Treatment and Research Institute
for Autism Spectrum Disorders, where she has continuing
frontline clinical experience with a broad variety of children
with Autism Spectrum Disorders and their families. Her
Contact Us...
Ask for Help
Autism Speaks™
Contact the
FAMILY SERVICES
A
A utism Respo
utism Response T
nse
eam (ARTT
) eam
members are specially
trained to help families with the day-to-day challenges
of living with autism. Contact ART with your questions
about resources, support and information.
Call us at 888-AUTISM 2 (288-4762) or email:
West Region
westART@autismspeaks.org
Midwest Region
midwestART@autismspeaks.org
Northeast Region
northeastART@autismspeaks.org
Southeast Region
southeastART@autismspeaks.org
Mor
There is e inf
a w
or
ealth of matio
informa
n...
tion on the Autism
Speaks web site. Visit www.AutismSpeaks.org
S
To har
share e y
your our co
comments mments
on the kit - What was
helpful? What additional information could be
inluded?, etc. - please email them to 100daykit@
AutismSpeaks.org, with the word “feedback” in
the subject line.
Autism Speaks.™ 100 Day Kit.
Section
About Autism ..................................................... 1
Why was my child diagnosed with Autism? And what does it mean?................................................1
Why does my child need a diagnosis of Autism?.....................................................................................1
How is Autism Diagnosed?...................................................................................................................................2
What is Autism?........................................................................................................................................................3
More information on the Symptoms of Autism...............................................................................5,6,7
Unique Abilities that may Accompany Autism........................................................................................8
Physical & Medical Issues that may Accompany Autism................................................................9,10
You, Your Family & Autism................................ 2
How will I deal with the diagnosis?................................................................................................11,12,13
Tips from Experienced Parents......................................................................................................................13,14
What should we know about our younger and future children?...........................................14
How will this effect our Family?.......................................................................................................................15
Sharing Your Struggle............................................................................................................................................16
Fifteen Tips for your Family..........................................................................................................................17,18
Getting Your Child Services................................ 3
How do I get help my child get the help he needs?.....................................................................................19
Accessing Services.................................................................................................................................................20
Your Child’s Rights............................................................................................................................................20,21
Treating Autism................................................... 4
How is Autism Treated?.........................................................................................................................................23
Treatments for Core Symptoms..................................................................................................................24-30
Applied Behavioral Analysis (ABA)...................................................................................................................25, 26
Pivotal Response Treatment (PRT).....................................................................................................................26
Verbal Behavior (VB)..............................................................................................................................................26 ,27
Floortime (DIR)......................................................................................................................................................27, 28
Relationship Development Intervention (RDI).................................................................................................28
Training & Education of Autistic & Related Communication Handicapped Children (TEACCH).........29
Social Communication/Emotional Regulation/Transactional Support (SCERTS)..............................29, 30
Treatment for Associated, Medical & Biological Symptoms...........................................................31-33
Is there a Cure?......................................................................................................................................................33
Choosing the Right Intervention........................................................................................................................34
Making it Happen............................................... 5
Assembling Your Team...........................................................................................................................................35
Hiring Therapists.....................................................................................................................................................36
Managing Your Team.............................................................................................................................................36
Including Your Family in Your Child’s Therapy..................................................................................................37
Suggested Books & Websites.............................................................................................................38,39,40,41
Section
Action Plan for the next 100 Days..................... 6
..
Autism Safety Kit .............................................. 7
Useful Forms....................................................... 8
Glossary............................................................... 9
Your Local Resources..........................................10
About A
Why was my child
diagnosed with Autism?
And what does it mean?
Your child has been diagnosed with autism
utism
and you have asked for help. This is an important
turning point in a long journey. For some families,
Why does my child need a
it may be the point where, after a long search for
answers, you now have a name for something you
didn’t know what to call, but you knew existed.
diagnosis of Autism?
Parents are usually the first to notice the early
Perhaps you suspected autism, but held out hope
signs of autism. You probably noticed that your child
that an evaluation would prove otherwise.
was developing differently from his or her peers. The
Many families report mixed feelings of
differences may have existed from birth, or may
sadness and relief when their child is diagnosed.
have become more noticeable later. Sometimes the
You may feel completely overwhelmed. You may
differences are severe and are obvious to everyone.
also feel relieved to know that the concerns you
In other cases they are more subtle and are first
have had for your child are valid. Whatever it is
recognized by a day-care provider or preschool teacher.
you feel, know that thousands of parents share
Those differences, the symptoms of autism, have lead
this journey. You are not alone. There is reason to
thousands of parents like you to seek answers that have
hope. There is help.
resulted in a diagnosis of autism.
Now that you have the diagnosis, the
You may wonder: Why does my child need a
question is, where do you go from here?
diagnosis of autism? That’s a fair question to ask -
This handbook, the Autism Speaks™ 100 especially when right now, no one is able to offer you a
Day Kit, was created to help you make the best
cure.
possible use of the next 100 days in the life of your
Autism Speaks is dedicated to funding global
child. It contains information and advice collected
biomedical research to find the causes, prevention,
from trusted and respected experts on autism and
treatment and a cure for autism. Great strides have
parents like you.
been made and the state of progress is a far cry from
the time when parents were given no hope for their
children. Some of the most brilliant minds of our time
have turned their attention toward this disorder and
we work at a constantly increasing pace toward a cure
for autism. While indeed, we live in an age of miracles
and wonders, we’re not there yet. In the meantime, the
best treatments available to us now – the therapies and
interventions you will learn about in this handbook –
{In this kit, the umbrella term “Autism”
refers to the Pervasive Developmental
Disorders, also known as Autism
Spectrum Disorders, including
Autism, PDD, PDD-NOS, and
are our chemotherapy, our dialysis, our insulin.
}
Asperger’s Syndrome.
It is important to remember, your child is the
same unique, lovable, wonderful person he or she
was before the diagnosis. There are however, several
reasons why having a diagnosis is important for
Autism Speaks
refer the child to Early Intervention and a specialist
for a developmental evaluation. Hearing and lead
exposure screenings should be performed and an
autism-specific screening tool, such as the Modified
Checklist of Autism in Toddlers (MCHAT) should be
used.
{“Now we know Nicky has Autism.
Everyone told me I was worrying about
nothing; that he was a late bloomer and
would ‘grow out of it.’ I didn’t want to
wait and see if he got better. Now that we }
know, we can help him.”
The MCHAT, is a list of simple questions
about your child. The answers determine whether
he or she should be referred to a specialist, usually
your child. A thorough and detailed diagnosis a Developmental Pediatrician, a Neurologist, a
provides important information about your child’s Psychiatrist or a Psychologist, for further evaluation.
behavior and development. It can provide a road There are other screening tools available, some geared
map for treatment, by identifying your child’s towards older children or specific Autism Spectrum
specific strengths and challenges, providing useful Disorders.
information about which needs and skills to target
Your child may have been diagnosed by one of
for intervention. A diagnosis is often required the professionals mentioned above. In some cases, a
to access autism specific services through early team of specialists may have evaluated your child and
intervention programs or your local school district.
provided recommendations for treatment. The team
may have included an Audiologist, to rule out hearing
loss, a Speech & Language Therapist, to determine
language skills and needs, and an Occupational
Therapist to evaluate physical and motor skills. If
this was not the case for your child, you will want to
make sure further evaluations are conducted so that
you can learn as much as possible about your child’s
strengths and needs.
How is Autism
Diagnosed?
Presently, there is not a medical test for
autism; a diagnosis is based on observed behavior
and educational and psychological testing.
As the symptoms of autism vary, so do the
{More information on terms that are
printed in bold is available in the
glossary at the end of this handbook
and in the Video Glossary at }
www.AutismSpeaks.org
routes to obtaining a diagnosis. You may have raised
questions with your pediatrician yourself. Some
children are identified as having developmental
delays before obtaining a diagnosis of autism and
may already receive some Early Intervention or
Special Education services.
Unfortunately, parents’ concerns are
sometimes not taken seriously by their doctor and
a diagnosis is delayed. Autism Speaks and other
autism related organizations are working hard to
educate parents and physicians so that children
with autism are identified as early as possible.
From birth to at least 36 months of age, every child
should be screened for developmental milestones
during routine well visits. If concerns about a
child’s development are raised, their doctor should
2
You may also hear the terms Classic Autism
or Kanner’s Autism (named after the first psychiatrist
W
to describe autism) used to describe the most severe
form of the disorder.
The American Psychiatric Association’s
Diagnostic and Statistical Manual of Mental
A hat
utism is a g
is A
eneral
utism?
term used to describe a Disorders is the main diagnostic reference used
group of complex developmental brain disorders by mental health professionals and insurance
known as Pervasive Developmental Disorders (PDD). providers in the United States. The current (fourth)
The other pervasive developmental disorders are edition, which was published in 1994, is commonly
PDD-NOS (Pervasive Developmental Disorder – Not referred to as the “DSM-IV.” The diagnosis of autism
Otherwise Specified), Asperger’s Syndrome, Rett Syn- requires at least six developmental and behavioral
drome and Childhood Disintegrative Disorder. Many characteristics are observed, that problems are
parents and professionals refer to this group as Au- present before age three, and there is no evidence
tism Spectrum Disorders.
for certain other conditions that are similar.
DSM-IV criteria for a diagnosis of Autism
I. A total of six (or more) items from heading (A), (B), and (C), with at least two from (A), and one each
from (B) and (C):
(A) Qualitative impairment in social interaction, as manifested by at least two of the following:
• Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression,
body posture, and gestures to regulate social interaction.
• Failure to develop peer relationships appropriate to developmental level.
• A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by
a lack of showing, bringing, or pointing out objects of interest to other people).
• A lack of social or emotional reciprocity.
(B) Qualitative impairments in communication as manifested by at least one of the following:
• Delay in or total lack of, the development of spoken language (not accompanied by an attempt to
compensate through alternative modes of communication such as gesture or mime).
• In individuals with adequate speech, marked impairment in the ability to initiate or sustain a
conversation with others.
• Stereotyped and repetitive use of language or idiosyncratic language.
• Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level.
(C) Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least
two of the following:
• Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is
abnormal either in intensity or focus.
• Apparently inflexible adherence to specific, nonfunctional routines or rituals.
• Stereotyped and repetitive motor mannerisms (e.g. Hand or finger flapping or twisting, or complex
whole-body movements).
• Persistent preoccupation with parts of objects.
II. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(A) Social interaction.
(B) Language is used in social communication.
(C) Symbolic or imaginative play.
III. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.
Source: Diagnostic and Statistical Manual of Mental Disorders; Fourth Edition
3
past 30 years suggests that people with autism may
involve inflammation in the central nervous system.
There is also emerging evidence from animal studies
How common that illustrates how the immune system can influence
is behaviors related to autism. Autism Speaks is working
to extend awareness and investigation of potential
immunological issues to researchers outside the field
A
of autism as well as those within the autism research
community.
utism?
Today, it is estimated that one in every 150
While the definitive cause (or causes) of
children is diagnosed with autism, making it more autism is not yet clear, it is clear that it is not caused
common than childhood cancer, juvenile diabetes by bad parenting. Dr. Leo Kanner, the psychiatrist
and pediatric AIDS combined. An estimated 1.5 who first described autism as a unique condition in
million individuals in the U.S. and tens of millions 1943, believed that it was caused by cold, unloving
worldwide are affected by autism. Government mothers. Bruno Bettelheim, a renowned professor of
statistics suggest the prevalence rate of autism child development perpetuated this misinterpretation
is increasing 10-17 percent annually. There is not of autism. Their promotion of the idea that unloving
established explanation for this increase, although mothers caused their children’s autism created a
improved diagnosis and environmental influences generation of parents who carried the tremendous
are two reasons often considered. Studies suggest burden of guilt for their children’s disability.
boys are more likely than girls to develop autism
In the 1960s and 70s, Dr. Bernard Rimland, the
and receive the diagnosis three to four times more father of a son with autism, who later founded the
frequently. Current estimates are that in the United Autism Society of America and the Autism Research
States alone, one out of 94 boys is diagnosed with Institute, helped the medical community understand
autism.
that autism is not caused by cold parents but rather is
W
a biological disorder.
hat c
The
auses A
simple answer is utism?
we don’t know. The
vast majority of cases of autism are idiopathic, which
means the cause is unknown.
The more complex answer is that just as there
are different levels of severity and combinations of
symptoms in autism, there are probably multiple
causes. The best scientific evidence available to
us today points toward a potential for various
combinations of factors causing autism – multiple
{The best scientific evidence
available to us today points
toward a potential for various
combinations of factors causing }
genetic components that may cause autism on their
autism.
own or possibly when combined with exposure to
as yet undetermined environmental factors. Timing
of exposure during the child’s development (before,
during or after birth) may also play a role in the
development or final presentation of the disorder.
A small number of cases can be linked to
genetic disorders such as Fragile X, Tuberous Sclerosis,
and Angelman’s Syndrome, as well as exposure
to environmental agents such as infectious ones
(maternal rubella or cytomegalovirus) or chemical
ones (thalidomide or valproate) during pregnancy.
There is a growing interest among researchers
about the role of the functions and regulation of
the immune system, both within the body and
the brain, in autism. Piecemeal evidence over the
4
Autism Speaks
More
respond to parents’ displays of anger or affection in
a typical way. Research has suggested that although
Information children with autism are attached to their parents,
their expression of this attachment is unusual and
difficult to “read”. To parents, it may seem as if
their child is not connected at all. Parents who
about Symptoms of looked forward to the joys of cuddling, teaching
and playing with their child may feel crushed by
this lack of the expected and typical attachment
A
behavior.
Children with autism also are slower in
learning to interpret what others are thinking and
utism
Autism affects the way your child perceives the
feeling. Subtle social cures such as a smile, a wave,
world and makes communication and social interaction
or a grimace-may have little meaning to a child with
difficult. He may also have repetitive behaviors or
autism. To a child who misses these cues, “Come
intense interests. Symptoms, and their severity, are
here” may always mean the same thing, whether
different for each of the affected areas (Communication,
the speaker is smiling and extending her arms for a
Social Interaction, and Repetitive Behaviors). Your child
hug or frowning and planting her fists on her hips.
may not have the same symptoms and may seem very
Without the ability to interpret gestures and facial
different from another child with the same diagnosis.
expressions, the social world may seem bewildering.
It is sometimes said, that if you know one person with
To compound the problem, people with autism
autism; you know one person with autism.
have difficulty seeing things from another person’s
The symptoms of autism typically last
perspective. Most five year olds understand that
throughout a person’s lifetime. A mildly affected
other people have different thoughts, feelings, and
person might seem merely quirky and lead a typical
goals than they have. A child with autism may lack
life. A severely affected person might be unable to
such understanding. This inability leaves them
speak or care for himself. Early intervention can make
unable to predict or understand other people’s
extraordinary differences in your child’s development.
actions.
How your child is functioning now may be very different
Although not universal, it is common for
from how he or she will function later on in life.
people with autism to have difficulty regulating
The information following – about the social
their emotions. This can take the form of
symptoms, communication disorders and repetitive
“immature” behavior such as crying in class or verbal
behaviors associated with autism – is taken from the
outbursts that seem inappropriate to those around
National Institute of Mental Health Website.
them. Sometimes they may be disruptive and
physically aggressive, making social relationships
even more difficult. They have a tendency to “lose
Social Symptoms
control”, particularly when they’re in a strange or
overwhelming environment, or when angry or
frustrated. At times, they may break things, attack
From the start,
others or hurt themselves. In their frustration,
typically
some bang their heads, pull their hair or bite their
developing infants are social beings. Early in life,
arms.
they gaze at people, turn toward voices, grasp a
finger, and even smile.
By contrast, most children with autism seem
to have tremendous difficulty learning to engage in
the give-and-take of everyday human interactions.
Even in the first year of life, many do not interact and
avoid eye contact in a normal way. They may seem
indifferent to other people, and prefer being alone.
They may resist attention or passively accept hugs
and cuddling. Later, they may fail to seek comfort or
5
Communication
their tone of voice may fail to reflect their feelings.
They may use a high-pitched, sing-song, or flat,
Difficulties
robot-like voice. Some children with relatively
good language skills speak like little adults, failing
to pick up on the “kid-speak” that is common in
their peers.
By age three, most children Without meaningful gestures or the
have passed predictable milestones on the path to
language to ask for things, people with autism are
learning language; one of the earliest is babbling.
less able to let others know what they need. As a
By the first birthday, a typical toddler says a word
result, they may simply scream or grab what they
or two, turns and looks when he hears his name,
want. Until they are taught better ways to express
points when he wants a toy, and when offered
their needs, children with autism do whatever they
something distasteful, makes it clear that the
can to get through to others. As they grow up, they
answer is “no”.
can become increasingly aware of their difficulties
Some people with autism remain mute
in understanding others and in being understood.
throughout their lives; although the majority
As a result, they are at greater risk of becoming
develops spoken language and all eventually learn
anxious or depressed.
to communicate in some way. Some infants who
later show signs of autism “coo” and babble during
the first few months of life, but they stop. Others
may be delayed, developing language as late as
age five to nine. Some children may learn to use
communication systems such as pictures of sign
language.
Children with autism who do speak often
use language in unusual ways. They seem unable
to combine words into meaningful sentences.
Some speak only single words, while others repeat
the same phrase over and over. They may repeat
or “parrot” what they hear, a condition called
{Until they are taught better ways
to express their needs, children
with autism do whatever they
can to get through to others. }
echolalia. Although many children with autism
go through a stage where they repeat what they
hear, it normally passes by the time they are three.
Some children with autism who are
only mildly affected may exhibit slight delays in
language, or even seem to have precocious language
and unusually large vocabularies, but have great
difficulty in sustaining a conversation. The “give
and take” of normal conversations may be hard,
although they may often carry on a monologue on
a favorite subject, giving others little opportunity
to comment. Another common difficulty is the
inability to understand body language, tone of
voice, or “phrases of speech.” For example, someone
with autism might interpret a sarcastic expression
such as “Oh, that’s just great” as meaning it really
IS great.
While it can be challenging for others to
understand what children with autism are less able
to say, their body language may also be difficult to
understand. Facial expressions, movements, and
gestures may not match what they are saying. Also
6
Repetitive
Behaviors
Although children with
autism usually appear physically normal, odd
repetitive motions may set them apart from other
children. These behaviors might be extreme and
highly apparent or more subtle. Some children
and older individuals repeatedly flap their arms
or walk on their toes. Some suddenly freeze in a
position.
As children, individuals with autism
might spend hours lining up their cars and trains
in a certain way, rather than using them for
pretend play. If someone moves one of the toys,
the children may be tremendously upset. Many
children with autism need, and demand, absolute
consistency in their environment. A slight change
in routines, such as mealtimes, dressing, taking a
bath, and going to school at a certain time or by
the same route, can be extremely stressful.
Repetitive behavior sometimes takes
the form of a persistent, intense preoccupation.
These strong interests may be unusual because
of their content (e.g. Being interested in fans or
toilets) or because of the intensity of the interest
(e.g. knowing much more detailed information
about Thomas the Tank Engine than peers). For
example, a child with autism might be obsessed
with learning all about vacuum cleaners, train
schedules, or lighthouses. Often older children
with autism have a great interest in numbers/
letters, symbols, dates or science topics.
{Many children with autism need,
and demand, absolute
consistency in their
environment.
}
Autism Speaks7
Unique Abilities
that may Accompany Autism
How can my child
You may have recognized that your child
with autism has some unusual skills and abilities.
have Autism when he
The information that follows, adapted from Sally
Ozonoff, Geraldine Dawson and James McPartland’s
seems so smart?
book, A Parent’s Guide to Asperger’s Syndrome and High-
Functioning Autism, and the article, “How can my child
Right now you might be thinking
about all the things your child with autism learned
have Autism when he seems so smart?” From Does
at a much younger age than other children you know.
My Child Have Autism? By Wendy Stone, highlight
And yes, you are right: there are also things that
some of them.
children with autism learn on their own much faster
Consider incorporating some of these
than their typically developing peers or siblings. For
abilities into your child’s treatment plan, where
example:
possible and appropriate, to take advantage of
They can be very good at learning to pick out
them.
their favorite DVD from a stack, even when it’s not
in its case.
They may learn at a very young age how to
From A Parent’s Guide
operate the remote controls to the TV and DVD
player so that they can rewind their videos to their
to Asperger Syndrome and
favorite parts (or fast forward through the parts they
don’t like).
High-Functioning Autism
They can be very creative in figuring out
ways to climb up on the counter to reach a cabinet
Just as individuals with autism have a variety that has their favorite cereal, or even how to use the
of difficulties they also have some distinctive
key to unlock the dead bolt on the back door so they
strength. Some of the strengths that individuals
can go outside to play on the swing.
with autism may have include:
Clearly, these are not behaviors that you
• Ability to understand concrete
would even think about trying to teach a two-year-old
concepts, rules and sequences
child. And yet some children with autism somehow
• Strong long term memory skills
manage to acquire these skills on their own.
• Math skills
How can we understand this inconsistency
• Computer skills
between the things children with autism do and
• Musical ability
don’t learn? How can a child who can’t put different
• Artistic ability
shapes into a shape sorter learn to turn on the TV
• Ability to think in a visual way
and DVD player, put a DVD in, and push the play
• Ability to decode written language at
button? How can a child who can’t understand a
an early age (This ability is called
simple direction like “Get your coast” figure out how
Hyperlexia. Some children with
to unlock a door to get outside?
autism can decode written language
What accounts for this unique learning
earlier than they can comprehend
style? In a word: motivation. We all pay attention
written language.)
better to the things that interest us, so we become
• Honesty – sometimes to a fault
much more proficient at learning them.
• Ability to be extremely focused – if
Understanding what is motivating to your
they are working on a preferred activity
child (all children are different) will be one of the
• Excellent sense of direction
keys to increasing their learning and their skills.
8
Physical and
higher if your child also has cognitive deficits or
mental retardation. It is also higher if your child has
certain physical features that are characteristic of a
Medical Issues given syndrome.
While none of these conditions is curable, it
is important to know if your child has one of these
that may Accompany Autism
syndromes because there may be other medical
issues that go along with some of them. Having a
known genetic cause for autism may also change
S
your risk of having another child with autism.
eizure
Seizur
e Disor
Disorder, ders
also called Epilepsy, occurs
in as many as 39% of people with autism. It is more Gastrointestinal
common in children who also have cognitive deficits
than those without. Some researchers have suggested
that it is more common when the child has shown a Disor
ders
regression or loss of skills.
Many parents report gastrointestinal (GI)
There are different types and subtypes of seizures problems in their children with autism. The exact
and a child with autism may experience more than one number of children with both gastrointestinal issues
type. The easiest to recognize are large “grand mal” (or such as gastritis, chronic constipation, colitis, celiac
tonic-clonic) seizures. Others include “petit mal” (or disease and esophagitis and autism is unknown.
absence) seizures and subclinical seizures, which may Surveys have suggested that between 46 and 85% of
only be apparent in an EEG (Electroencephalogram). It children with autism have problems such as chronic
is not clear whether subclinical seizures have effects constipation or diarrhea.
on language, cognition, and behavior.
One recent study identified a history of
The seizures associated with autism usually gastrointestinal symptoms (such as abnormal
start either early in childhood or during adolescence, pattern of bowl movements, frequent constipation,
but may occur at any time. If you are concerned that frequent vomiting, and frequent abdominal pain) in
your child may be having seizures you should see a 70% of the children with autism, compared with 42%
neurologist. The neurologist may order tests which of children with other developmental disabilities and
may include an EEG, an MRI (Magnetic Resonance 28% of children without developmental disabilities.
Imaging), CT (Computed Axial Tomography) and a CBC
If your child has symptoms such as chronic
(Complete Blood Count).
or recurrent abdominal pain, vomiting, diarrhea,
Children and adults with epilepsy are typically or constipation, you will want to consult a
treated with anticonvulsant or seizure medicines gastroenterologist (preferably one that works with
to reduce or eliminate occurrence. If your child has people with autism). Your child’s physician may
epilepsy, you will work closely with a neurologist to be able to help you find an appropriate specialist.
find the medicine that works the best with the fewest Pain caused by GI issues is sometimes recognized
side effects and to learn the best ways to ensure your because of a change in a child’s behavior, such as an
child’s safety during a seizure.
increase in self soothing behaviors such as rocking or
outbursts of aggression or self-injury. Bear in mind
that your child may not have the language skills to
communicate pain caused by GI issues. Treating GI
Genetic Disor
A small number of ders
children with autism may problems may result in improvement in your child’s
also have an identifiable neurogenetic condition behavior.
such as Fragile X Syndrome, Angelman’s Syndrome, a
A popular dietary intervention for GI
neurocutaneous disorder called Tuberous Sclerosis, issues includes the elimination of dairy and gluten
Chromosome 15 Duplication Syndrome or another containing foods (for more information see Gluten
chromosomal abnormality.
Free Casein Free diet in the treatment section of this
If your child has clinical features, such as a family kit). As with any treatment it is best to consult your
history or physical symptoms, that are characteristic child’s physician to develop a comprehensive plan.
of one of these disorders, your pediatrician may order
In February 2007, Autism Speaks initiated
tests or may refer you to a developmental pediatrician, a campaign to inform pediatricians about the
a geneticist and/or a child neurologist for testing. The diagnosis and treatment of GI problems associated
chance of having one of these abnormalities is a little with autism. For additional information that can be
9
shared with your child’s doctor, go to the following link
SIDs can involve hypersensitivity, also known
on the Autism Speaks website: www.AutismSpeaks. as sensory defensiveness, or hyposensitivity. An
org/docs/Autism_Speaks_GI_Statement_1-07.pdf
example of hypersensitivity would be the inability to
tolerate wearing clothing, being touched, or being in a
S
room with normal lighting. Hyposensitivity might be
apparent in a child’s increased tolerance of pain or a
leep Dysfunction
constant need for sensory stimulation.
Is your child having trouble getting to sleep
Treatment for Sensory Integration Dysfunction
or sleeping through the night? Sleep problems are is usually addressed with occupational therapy and/or
common in children and adolescents with autism. sensory integration therapy.
Having a child with sleep problems can affect the
whole family. It can also have an impact on the
ability of your child to benefit from therapy.
Sometimes sleep issues may be caused by P ica
medical issues such as obstructive sleep apnea or
Pica is an eating disorder involving eating
gastroesophageal reflux and addressing the medical things that are not food. Children between 18 and 24
issues may solve the problem. In other cases, when months old often eat non food items, but this is typically
there is no medical cause, sleep issues may be a normal part of development. Some children with
managed with behavioral interventions including autism and other developmental disabilities persist
“sleep-hygiene” measures such as limiting the beyond the developmentally typical time frame and
amount of sleep during the day, and establishing continue to eat items such as dirt, clay, chalk or paint
regular bedtime routines.
chips.
There is some evidence of abnormality of
Children showing signs of persistent mouthing
melatonin regulation in children with autism. While of fingers or objects, including toys, should be tested
melatonin may be effective for improving the ability for elevated blood levels of lead, especially if there is a
of children with autism to fall asleep, more study is known potential for environmental exposure to lead.
needed. Melatonin or sleep aids of any kind should
not be given without first consulting with your
child’s physician.
Sensory Integration
D
ysfunctio
Many childr n
en with autism experience
unusual responses to sensory stimuli, or input.
These responses are due to difficulty in processing
and integrating sensory information. Vision,
hearing, touch, smell, taste, the sense of movement
(vestibular system) and the sense of position
(proprioception) can all be affected. This means
that while information is sensed normally, it may
be perceived much differently. Sometimes stimuli
that seem “normal” to others can be experienced as
painful, unpleasant or confusing by the child with
Sensory Integration Dysfunction (SID), the clinical
term for this characteristic. (SID may also be called
Sensory Processing Disorder or Sensory Integration
Disorder.)
10
Autism Speaks
How will I deal Anger
Y
ou,
With time, your sadness may give way to
with this diagnosis? anger. Although anger is a natural part of the process,
you may find that it’s directed at those closest to you
– your child, your spouse, your friend or at the world Y
You are never prepared for a diagnosis of in general. You may also feel resentment toward
autism. It is likely that you will experience a range parents of typical children. Your anger may come out our
of emotions. It is painful to love so much, to want in different ways – snapping at people, overreacting
something so much, and not quite get it. You want at small things, even screaming and yelling. Anger is
your child to get better so much you may feel some normal.
of the stages commonly associated with grieving.
It is a healthy and expected reaction to F
You may “revisit” these feelings from time to time in feelings of loss and stress that come with this
the future. Part of moving forward, is dealing with diagnosis. Expressing your anger releases tension. amil
your own needs and emotions along the way.
It’s an attempt to tell the people around you that
you hurt, that you are outraged that this diagnosis
has happened to your child.
Stages Associated
y
with Grieving
{“I felt angry when a child at my son’s
school was diagnosed with Leukemia
around the time our son was diagnosed
&
with autism. Everyone sent cards and
cooked dinners for them. They didn’t } A
S
know I needed that kind of help too.
When I let people know I needed help
they came through for me.”
utism
hock
Immediately after the diagnosis you may feel
stunned or confused. The reality of the diagnosis may
be so overwhelming that you’re not ready to accept
it or you initially ignore it. You may also question the Denial
diagnosis or search for another doctor who will tell
You may go through periods of refusing to
you something different.
believe what is happening to your child. You don’t
Sadness or Grief
consciously choose this reaction; like anger, it just
happens. During this time, you may not be able to
hear the facts as they related to your child’s diagnosis.
Many parents must mourn some of the hopes Don’t be critical of yourself for reacting this way.
and dreams they held for their child before they can Denial is a way of coping. It may be what gets you
move on. There will probably be many times when through a particularly difficult period. You must,
you feel extremely sad. Friends may refer to this as however, be aware of that you may be experiencing
being “depressed,” which can sound frightening.
denial so that it doesn’t cause you to lose focus on
There is, however, a difference between your child’s treatment.
sadness and depression. Depression often stands
Try not to “shoot the messenger.” When
in the way of moving forward. Allowing yourself someone, a professional, a therapist or a teacher,
to feel sadness can help you grow. You have every tells you something that is hard to hear about your
right to feel sad and to express it in ways that are child, consider that they are trying to help you so
comfortable. Crying can help release some of the that you can address the problem. It is important
tension that builds up when you try to hold in not to alienate people who can give you helpful
sadness. A good cry can get you over one hurdle and feedback and monitoring of your child’s progress.
help you face the next.
Whether you agree or not, try to thank them for the
information. If you are upset, try considering their
information when you have had a chance to calm
down.
11
{“My husband had a harder time
accepting our son’s diagnosis at first.
When Max began making progress
in his ABA program, everything
changed for the better. For a while, }
I was the one holding everything
together for all of us.”
Loneliness
You may feel isolated and lonely. These
feelings may have many causes. Loneliness may
also come from the fact that in your new situation
you simply don’t feel you have the time to contact
friends or family for company or that, if you did reach
out, they wouldn’t understand or be supportive. In
the pages that follow, we have some suggestions for
taking care of yourself and for getting the support
you need.
Acceptance
Give yourself
Ultimately, you may feel a sense of acceptance. time to adjust
It’s helpful to distinguish between accepting that
Be patient with yourself. It will take some time
your child has been diagnosed with autism and to understand your child’s disorder and the impact it
accepting autism. Accepting the diagnosis simply has on you and your family. Difficult emotions may
means that you are ready to advocate for your child. resurface from time to time. There may be times when
The period following an autism diagnosis can be you feel helpless and angry that autism has resulted in
very challenging, even for the most harmonious a life that is much different than you had planned. But
families. Although the child affected by autism may you will also experience feelings of hope as your child
never experience the negative emotions associated begins to make progress.
with the diagnosis, parents, siblings and extended
family members may each process the diagnosis in
different ways, and at different rates.
12
Autism Speaks
Her
from paren e
ts ar
who hae
ve e some
xperienced whatips
Caring
t you are
for the going through:
Get g
Getting y oing
our child .
Car
started in treatment will help.
There are many details you will be managing in an
intensive treatment program, especially if it is based
egiv
Changing er
the course of your child’s life with in your home. If you know your child is engaged in
autism can be a very rewarding experience. You are meaningful activities, you will be more able to focus
making an enormous difference in his or her life. To on moving forward. It may also free up some of your
make it happen, you need to take care of yourself. Take time so you can educate yourself, advocate for your
a moment to answer these questions: Where does child, and take care of yourself so that you can keep
your support and strength come from? How are you going.
really doing? Do you need to cry? Complain? Scream?
Would you like some help but don’t know who to ask? Ask f
Asking for or help
help can be ver .
y difficult, especially at first.
Don’t hesitate to use whatever support is available
to you. People around you may want to help, but
may not know how. Is there someone who can take
your other kids somewhere for an afternoon? Or
cook dinner for your family one night so that you can
spend the time learning: Can they pick a few things
up for you at the store or do a load of laundry? Can
they let other people know you are going through a
{Remember that if you want to take
the best possible care of your child,
you must first take the best possible
care of yourself.
Parents often fail to evaluate their o }
wn sources difficult time and could use a hand?
of strength, coping skills, or emotional attitudes. You
may be so busy meeting the needs of your child that T
Ev alk to so
eryone needs
meo
someone t ne
o
.
you don’t allow yourself time to relax, cry, or simply
talk to. Let someone
think. You may wait until you are so exhausted or know what you are going through and how you feel.
stressed out that you can barely carry on before you Someone who just listens can be a great source of
consider your own needs. Reaching this point is bad strength. If you can’t get out of the house, use the
for you and for your family.
phone to call a friend.
You may feel that your child needs you right
now, more than ever. Your “to do” list may be what
is driving you forward right now. Or, you may feel
completely overwhelmed and not know here to start.
There is no single way to cope. Each family is unique
gr {At my support group I met a group
of women who were juggling the
same things I am. It felt so good
not to feel like I was from another
Cooupnsider
. It may be
joining
helpful to listen or
who have been or are going thr
}
and deals with stressful situations differently. Getting
planet!
your child started in treatment will help you feel
better.
Acknowledging the emotional impact of
autism and taking care of yourself during this stressful
a support
period will help prepare you for the challenges ahead.
talk to people
Autism is a pervasive, multi-faceted disorder. It will
ough a similar
not only change the way that you look at your child, experience. Support groups can be great sources
it will change the way you look at the world. As some for information about what services are available in
parents may tell you, you may be a better person for your area and who provides them. You may have to
it. The love and hope that you have for your child is try more than one to find a group that feels right
probably stronger than you realize.
to you. You may find you aren’t a “support group
kind of person.” For many parents in your situation,
support groups provide valuable hope, comfort and
encouragement.
13
T
If r
y y to take a br
ou can, allow yourself to eak.
take some time away,
even if it is only a few minutes to take a walk. If it’s
{The Internet will be one of the
most important tools you have for
learning what you need to know
about autism and how to help your
What should w}
child.
possible, getting out to a movie, going shopping, or
visiting a friend can make a world of difference. If
you feel guilty about taking a break, try to remind
yourself that it will help you to be renewed for the
e
things you need to do when you get back.
T
know about our
If r
y y to g
ou are g
et so
etting r
me r
egular sleep, y est.
ou will be better
prepared to make good decisions, be more patient younger or future children?
with your child and deal with the stress in your life.
Although autism is believed to have a strong
Consider keeping
environmental component, there is little doubt that
a journal.
autism is a disorder with a strong genetic basis. If you
Louise DeSalvo, in Writing as a Way of Healing, notes are expecting another child, or have plans to expand
that studies have shown that “writing that describes your family in the future, you may be concerned about
traumatic events and our deepest thoughts and the development of any younger siblings of your child
feelings about them is linked with improved immune with autism.
function, improved emotional and physical health,”
Studies have estimated that families affected
and positive behavioral changes. Some parents have with one child with autism have roughly a 5-10%
found a journaling a helpful tool for keeping track of percent chance of having a second child with autism.
their children’s progress, what’s working and what This risk increases if two or more children in the family
isn’t.
are already affected.
Be mindful of the time More recent evidence has suggests that early
signs of autism may be seen in some children as young
you as 8-10 months of age. For example, infants who later
spend on the Internet. The Internet will be one of develop autism may be more passive, are more difficult
the most important tools you have for learning to soothe, or fail to orient when their name is called.
what you need to know about autism and how to Some of these early signs may be noticed by parents,
help your child.
others may only be observed with the help of a trained
Unfortunately, there is more information on clinician.
the web than any of us have time to read in a lifetime.
Through a joint venture between Autism
There may also be a lot of misinformation. Right Speaks and the National Institute of Child Health and
now, while you are trying to make the most of every Human Development, research on the early signs and
minute, keep an eye on the clock and frequently ask symptoms of autism has been accelerated. Called the
yourself these important questions:
High Risk Baby Siblings Research Consortium, or BSRC,
• Is what I’m reading right now very likely to be
the collaboration is comprised of over 20 researchers at
relevant to my child?
a dozen different sites in the US, Canada and Israel, with
• Is it new information?
a similar effort in the United Kingdom. The purpose of
• Is it helpful?
this collaborative effort is to help identify behavioral and
• Is it from a reliable source?
biological markers for autism so that diagnosis can be
made earlier than ever before, leading to improved and
Sometimes, the time you spend on the more specific behavioral intervention in young children
Internet will be incredibly valuable. Other times, it and even infants.
may be better for you and your child if you use that
While there is a general acceptance in the
time to take care of yourself.
scientific community that “earlier is better”, this research
will provide evidence on different therapies which
partner therapist time and parent training. Recently,
a group of researchers within the BSRC, together with
psychologists from around the US, has formed the
14
Autism Speaks Toddler Treatment Network (TTN).
The goal of the network is to determine whether
grandson.” But then I’ve also been told, “We were
intervention between the ages of 18 to 24 months of
very touched by how our family reacted to my
age affects developmental outcome at an age when
son’s diagnosis. Everyone asked what they could
autism can be more reliably diagnosed.
do to help, and they showed us so much support.
A number of other projects are underway to
I know his grandparents read books and articles
better identify developmental paths of children with
on the disorder so they could better understand
autism, as well as potential risk factors, and common
him. My mother even quit her job to help me
neurobiological markers. If you are interested in
through this very difficult time.” Yes, reactions
participating in a research project studying the earliest
vary widely. But whatever reaction you get, it will
signs of autism, visit www.AutismSpeaks.org/science/
be very important to educate your parents about
research/initiatives/babysibs.php or Family Services at
the nature of autism after you have told them
www.AutismSpeak.org/participate/index.php to find
about the diagnosis.
a project in your area. These studies provide intense
To begin your discussion, you might talk
observation, documentation, and feedback by experts
about specific behaviors. For example:
in the field on the development of your child with
“You know those behaviors we’ve been confused
autism, and any other children at risk for autism.
about for so long? Well, now we have a name
If you are interested in other intervention
for them and an explanation for why they occur.
programs that are not part these studies, contact
Howie doesn’t act the way he does because he’s
Family Services at Autism Speaks to help identify an
spoiled or because he’s shy or because he doesn’t
early intervention program in your area.
like us – he acts that way because he has autism.
How
Autism explains why he doesn’t speak or use
gestures and why he doesn’t seem to understand
will this
what we say. It explains why he’s not as interested
in interacting with us as the other children in the
aff
ect
Even our
though
it F
is amil
your child y?
family have been and why he plays with spoons
and bottles instead of toys.
I know this is upsetting news for all of
who has the
us. But the good news is that the disorder has
diagnosis, it is important to acknowledge that autism
been diagnosed early, and there are a lot of things
“happens” to the whole family. It affects every member
we can do to help him. He’ll be starting some
of the household. This section of your handbook may
therapies soon, and I’ll be learning about things I
help you anticipate some of the emotions you and
can do to help him at home. I know that you will
other people in your family will experience.
need some time to think about all of this. But if
The following article, adapted from Does My
you have any questions as we begin his therapy,
Child Have Autism? By Wendy L. Stone, Ph.D., provides
I’ll be glad to try my best to answer them. I know
some helpful information for talking to your parents
we’re all hoping for the best outcome possible.”
and close family members about the diagnosis.
After the initial conversation about this
diagnosis, continue to keep your other children
Breaking
and your extended family in the information loop.
the news.
Autism doesn’t affect only one child. It affects the
entire family.
Sometimes telling your parents about
your child’s diagnosis can be extremely difficult,
especially with your own emotions running so high.
It’s hard to know what to expect; I’ve seen that
parental reactions to this news can vary dramatically.
One young mother told me, “My mother-in-law
told us that we shouldn’t bring my son to family
gatherings until he grows up. It’s heartbreaking to
{ Autism doesn’t affect
only one child.
It affects the entire
hear her say that she would rather not see any of
family.
}
us for years instead of trying to understand her own
15
Sharing your
struggle with family &
friends
{Our friends and families
rallied around us in
amazing ways and have
continued to cheer }
The following article by Lynn Kern Koegel,
Andrew’s progress.
Ph.D. and Claire LaZebnik, from the book Overcoming
Autism, offers a suggestion for how to tell people
and explains why, for some people, it can make life
easier for you and your friends.
Real friends don’t love you more
for being successful or less for having problems.
If anything, it works the opposite way – we’re
all so busy that sometimes we forget to stay in
Telling People
touch with friends when everything’s fine for
them, but we rush forward when they need us.
You should, you know. Now is the time to take advantage of that. Talk
Tell people. You don’t have to
your friends’ ears off, complain, bitch and moan
walk up to strangers on the street or anything,
to them. You’re dealing with a huge challenge
but confide in the people who love you. That
– take advantage of every minor plus it has to
was one thing we did right: we told our
offer.
families and our friends right away. First
we called them, and then we copied a good
comprehensive article someone wrote about
autism and annotated it with specifics about
Andrew, and we mailed it out to everyone we
knew. (You could do the same things with
sections from this book, by the way.)
None of our good friends pulled
away from us because our kid had autism.
Just the opposite – our friends and families
rallied around us in amazing ways and have
continued to cheer Andrew’s progress on year
after year.
In all honesty, telling people
what we were going through only made our
lives easier. Before then, we worried that
Andrew’s occasionally aberrant behavior
was off-putting. But once he had a formal
diagnosis, everyone cut us a lot of slack, and
instead of wondering what the hell was wrong
with us as parents, most people we knew
admitted to a newfound respect for us for
dealing with so much.
16
Fifteen Tips Get involved with the Autism
community. Don’t underestimate the power
for Your Family
of “community”. You may be the captain
of your team, but you can’t do everything
yourself. Make friends with other parents
As a result of her work with many families who
who have children with autism. By meeting
deal so gracefully with the challenges of autism, Family
other parents you will have the support of
Therapist, Kathryn Smerling, Ph.D., offers these five tips
families who understand your day to day
for parents, five for siblings and five for extended family
challenges. Getting involved with autism
members:
advocacy is empowering and productive. You
will be doing something for yourself as well as
your child by being proactive.
5 Tips for Parents
Learn to be the best advocate you can
5 Tips for
be for your child. Be informed. Take advantage
of all the services that are available to you in your
community. You will meet practitioners and
Brothers & Sisters
providers who can educate you and help you.
You will gather great strength from the people
Remember that you are not
alone! Every family is confronted with life’s
you meet.
challenges… and yes, autism is challenging…
Don’t push your feelings away. Talk
but, if you look closely, nearly everyone has
about them. You may feel both ambivalent and
something difficult to face in their families.
angry. Those are emotions to be expected. It’s
OK to feel conflicting emotions. Try to direct
Be proud of your brother or sister.
Learn to talk about autism and be open and
your anger towards the disorder and not towards
comfortable describing the disorder to others.
your loved ones. When you find yourself arguing
If you are comfortable with the topic…they
with your spouse over an autism related issue, try
will be comfortable too. If you are embarrassed
to remember that this topic is painful for both of
by your brother or sister, your friends will sense
you; and be careful not to get mad at each other
this and it will make it awkward for them. If
when it really is the autism that has you so upset
you talk openly to your friends about autism,
and angry.
they will become comfortable. But, like
Try to have some semblance of an adult
everyone else, sometimes you will love your
life. Be careful to not let autism consume every
brother or sister, and sometimes you will hate
waking hour of your life. Spend quality time
them. It’s okay to feel your feelings. And,
with your typically developing children and your
often it’s easier when you have a professional
spouse, and refrain from constantly talking about
counselor to help you understand them –
autism. Everyone in your family needs support,
someone special who is here just for you!
and to be happy despite the circumstances.
Love your brother or sister the way they are.
Appreciate the small victories your
While it is OK to be sad
child may achieve. Love your child and take great
that you have a brother or sister affected by
pride in each small accomplishment. Focus on
autism it doesn’t help to be upset and angry
what they can do instead of making comparisons
for extended periods of time. Your anger
with a typically developing child. Love them for
doesn’t change the situation; it only makes
who they are rather than what they should be.
you unhappier. Remember your Mom and
Dad may have those feelings too.
17
Spend time with your Mom
kind of support so you must be considerate and
and Dad alone. Doing things together as
look elsewhere. In this way you can be stronger
a family with and without your brother or
for them, helping with the many challenges they
sister strengthens your family bond. It’s OK
face.
for you to want alone time. Having a family
Be open and honest about the disorder.
member with autism can often be very time
The more you talk about the matter, the better
consuming, and attention grabbing. You need
you will feel. Your friends and family can
to feel important too. Remember, even if your
become your support system…but only if you
brother or sister didn’t have autism, you would
share your thoughts with them. It may be hard
still need alone time with Mom and Dad.
to talk about it at first, but as time goes on it
will be easier. In the end your experience with
Find an activity you can do
autism will end up teaching you and your family
with your brother or sister. You will find it
profound life lessons.
rewarding to connect with your brother or
sister, even if it is just putting a simple puzzle
Put judgment aside. Consider
together. No matter how impaired they
your family’s feelings and be supportive. Respect
may be, doing something together creates a
the decisions they make for their child with
closeness. They will look forward to these
autism. They are working very hard to explore
shared activities and greet you with a special
and research all options, and are typically
smile.
coming to well thought out conclusions. Try
5 Tips for
not to compare children (this goes for typically
developing kids as well). Children with autism
can be brought up to achieve their personal
Grandparents and best. Learn more about Autism. It affects
Extended Family
people of all social and economic standing. There
is promising research, with many possibilities for
Family members
the future. Share that sense of hope with your
have a lot to
family while educating yourself about the best
offer. Each family member is able to offer the
ways to help manage this disorder.
things they have learned to do best over time.
Ask how you can be helpful to your family.
Carve out special time for
Your efforts will be appreciated whether it
each child. You can enjoy special moments with
means taking care of the child so that the
both typically developing family members and
parents can go out to dinner, or raising money
the family member with autism. Yes, they may
for the special school that helps your family’s
be different but both children look forward to
child. Organize a lunch, a theatre benefit, a
spending time with you. Children with autism
carnival, or a card game. It will warm your
thrive on routines, so find one thing that you can
family’s hearts to know that you are pitching
do together that is structured, even if it is simply
in to create support and closeness.
going to a park for fifteen minutes. If you go to
the same park every week, chances are over time
Seek out your own support. If you
that activity will become easier and easier…it
find yourself having a difficult time accepting
just takes time and patience. If you are having a
and dealing with the fact that your loved one
difficult time trying to determine what you can
has autism, seek out your own support. Your
do, ask your family. They will sincerely appreciate
family may not be able to provide you with that
that you are making.
18
Autism Speaks
For these reasons, an intervention
program for your child should be implemented
Getting
How
as soon as possible after he or she receives a
diagnosis. However, as you probably know by
now, it can be very challenging to teach young
do I get the
children with autism. They have a unique
help my child needs? profile of strengths and needs and require
intervention services and teaching approaches
that are sensitive to these needs. That’s why
The road ahead will be bumpy. There will be
strategies that worked for teaching your other
Y
times when your progress stalls or takes an unexpected
children to remain seated at the dinner table,
turn. When it does, try to remind yourself that these
our Child S
to play appropriately with a toy, or to say
are speed bumps, not roadblocks. Take them one at a
words simply don’t work as well for your child
time.
It is important that you start now. There are
with autism. In the same way, intervention
a variety of services available to treat and educate
programs that are generic – rather than autism-
your child. The article below, from Does My Child Have
specialized – are less likely to be effective for
Autism? By Wendy L. Stone, PhD, with Theresa Foy
your child. That’s why as you begin your
DiGeromino, MEd, explains why:
exploration of early intervention, you must
keep in mind that not all interventions are
equal.
Early Intervention
is Your Child’s Best
er
Hope for the Future
vices
There is no debate or doubt:
early intervention is your child’s best hope for
the future. Early attention to improving the
{Early Intervention
will improve the
outcome for your }
core behavioral symptoms of autism will give
child.
your child – and the rest of the family – several
important benefits that you will not gain if you
take a wait-and-see approach until your child
enters school at age four or five. A good early
intervention program has at least four benefits:
It will provide your child with instruction
that will build on his or her strengths to teach
new skills, improve behaviors, and remediate
areas of weakness.
It will provide you with information
that will help you better understand your child’s
behavior and needs.
It will offer resources, support, and
training that will enable you to work and play
with your child more effectively.
It will improve the outcome for your
child.
19
Accessing What is a “Free and
Services
Appropriate Public
Educ
ation” (FAPE)?
Your Child’s Rights As described previously, IDEA provides for a
“free and appropriate education” for all children with
disabilities. Each word in this phrase is important,
f
but “appropriate” is the one that relates specifically
to your special needs child. Your child is entitled to an
or Public Education
education that is tailored to his or her special needs and
Your special needs child has the right to a a placement that will allow them to make educational
free and appropriate education. The individuals progress.
with Disabilities Education Act (IDEA), which was
Although you and your child’s teachers or
first enacted in 1975 and most recently revised in therapists may want to provide your child with the best
2004, mandates that each state provide all eligible or optimal program and services, the school district is
children with a public education that meets their not required to provide the best or optimal but rather
individual needs.
an appropriate education. One of the challenges here
The Individuals with Disabilities Act (IDEA) is working with the school district to determine what
was most recently revised in 2004 (and, in fact, is appropriate and, therefore, what will be provided
renamed the Individuals with Disabilities Education for your child. This is a collaborative process that may
Improvement Act, but most people still refer to it as involve considerable negotiation to secure the services
IDEA). The law mandates that the state provide all from the school.
eligible children with a free and appropriate public
education that meets their unique individual needs.
IDEA specifies that children with various
disabilities, including autism, are entitled to early What is “Least
intervention services and special education. If your
child has been diagnosed with a form of autism, the Restrictive Environment”
diagnosis is generally sufficient to gain access to the
rights afforded by IDEA. The IDEA legislation has (L
RE)?
established an important role for parents in their
As specified in the IDEA, your child is also entit-
children’s education. You, as a parent, are entitled led to experience the “least restrictive environment.”
to be treated as an equal partner with the school This means that your child should be placed in the
district in deciding on an education plan for your environment in which he or she has the greatest
child and his or her individual needs. This enables possible opportunity to interact with children who do
you to be a powerful advocate for your child. It not have a disability and to participate in the general
also means that you must be an informed, active education curriculum. This is commonly referred to as
participant in planning and monitoring your child’s mainstreaming or inclusion. In the general education
unique program and legal rights.
setting, providing the least restrictive environment can
sometimes be accomplished with accommodations,
such as using a one-on-one aide who is trained to work
with children with autism. While it may be true that
seeking the least restrictive environment is beneficial
for children with autism, it’s important to consider
whether or not an option such as inclusion is right for
your child. It may or may not be more appropriate for
20
{You, as a parent, are entitled
to be treated as an equal
partner with the school
district in deciding on an }
education plan for your
your child to be placed in a special education program,
child...
in a school for children with special needs, or in a home
instruction program.
Early Intervention child’s needs and how these needs will be met is the
S
Individualized Education Program (IEP).
Like the IFSP, the IEP describes your child’s
strengths and weaknesses, sets goals and objectives,
ervices (EI)
and details how these can be met. Unlike the IFSP,
The IDEA provides states with federal grants the IEP is almost entirely related to how the needs
to institute early intervention programs. Any child of your child will be met within the context of the
younger than age three who has a developmental school district and within school walls.
delay or a physical or mental condition likely to result
in a developmental delay is eligible to receive early
intervention services through these programs. If
your child is determined to be eligible, these early Extended School
intervention services must be provided to you at no
cost.
EI services can vary widely from state to state Y
ear (ESY ) Services
and region to region. However, the services should
address your child’s unique needs rather than being
If there is evidence that your child experien-
limited to what is currently available or customary in ces a substantial regression in skills during school
your area. The document that spells out your child’s vacations, he or she may be entitled to ESY services.
needs and the services that will be provided is the These services would be provided over long
Individual Family Service Plan (IFSP). The IFSP should breaks from school (summer vacation) to prevent
be based on a comprehensive evaluation of your substantial regression, but not to acquire new skills.
child. It should describe your child’s current levels of
functioning and the anticipated goals. It should also
It is important for the family to remain
list the specific services that will be provided to your involved in determining appropriate goals,
child and your family.
communicating with the educational team about
EI services are aimed at minimizing the impact progress, and working to provide consistency
of disabilities on the development of your child. between home and school.
Services for your child may include, but are not limited
to, speech and language instruction, occupational
therapy, physical therapy, Applied Behavior Analysis
(ABA) and psychological evaluation. Services for
families may include training to help reinforce the
{ “I was overwhelmed in the
beginning by all the evaluations
and paperwork. Watching the
changes in Samantha as she }
affected child’s new skills and counseling to help the
learns and grows, we know
family adapt.
our efforts are paying off.”
Special Education
S
ervices
Special education services pick up where early
intervention services leave off, at age 3. Your local
school district provides these services through their
special education department. The focus of special
education is different from that of early intervention.
While early intervention addresses your child’s overall
development, special education focuses on providing
your child with an education, regardless of disabilities
or special needs. The document that spells out your
21
How do I get Services
started for my child?
For Early Intervention Services, if your
child is under the age of three, call your local Early
Intervention Agency. Contact information is included
in the local resources guide of this kit.
For Special Education Services, if your child
is three or older, contact your local school district.
Refer to “Assembling Your Team” in this kit for more
information.
You’ll find more information at the
Autism Speaks web site, www.AutismSpeaks.org/
community/fsdb/search.php and in the Action Plan
{“While we were waiting for EI to
complete the ‘evals’, my husband
and I picked up two copies of
the same book about autism and
raced each other through it. By }
section of this kit.
the time the tests were done, we’d
Before Service can be provided, it may be
learned a lot!“
necessary to complete further assessments and
evaluations. These may include:
• An Unstructured Diagnostic Play Session
• A Developmental Evaluation
• A Speech - Language Assessment
• A Parent Interview
• An Evaluation of Current Behavior
• An Evaluation of Adaptive or Real Life Skills
You may find yourself spending some time
in waiting rooms with your child when you are
completing additional evaluations. You have probably
already figured out how helpful it is to bring some
snacks for your child, his or her favorite toy, or some
other form of entertainment to help pass the time.
Having to wait for the completion of these
additional evaluations, which may be required by
the school district or Early Intervention, may be
frustrating. Often, they provide much more in-depth
information about your child’s symptoms, strengths
and needs and will be helpful for accessing and
planning therapy services in the long run.
If you find you are spinning your wheels,
waiting for them, there are things you can be doing
to in the meantime. Talk to other parents about
what services have been helpful for their children.
Investigate the therapies outlined in this kit. Start
reading about autism. (There is a list of suggested
books and web sites in this kit.)
Autism Speaks
22
How
Gastroenterologist. For this reason, we’ve included
is Autism information here to explain treatments for the
Core Symptoms of autism & the treatments for T
treated?
Associated Symptoms and Biological and Medical
Conditions Associated with autism.
r
Intensive treatments for autism’s Core eating A
Symptoms address the Social, Communication &
Cognitive Issues at the heart of autism. Treatments
Treatment for autism for Associated Symptoms address challenges
is usually a very intensive, comprehensive commonly associated with autism, but not specific
undertaking that involves the child’s entire family and to the disorder. If your child has Biological or Medical
a team of professionals. Some programs may take place Conditions, such as Allergies, Food Intolerances,
in your home. These may be based in your home with Gastrointestinal Issues or Sleep Disturbances, these
professional specialists and trained therapists or may will need to be treated too. Treatment programs
include your being trained as a therapist for your child may combine therapies for both Core Symptoms
under supervision of a professional. Some programs
utism
and Associated Symptoms. Your child’s treatment
are delivered in a specialized center, classroom or program will depend on his needs and strengths.
preschool. It is not unusual for a family to choose to
Some of these therapies may be used
combine more than one treatment method.
together. For example, if medical causes for sleep
disturbances are ruled out, a behavioral intervention
might be used to address them. Occupational
Therapy or Speech & Language Therapy are often
integrated into one of the intensive therapy programs
described here as Core Symptom Therapies. Many
{ The terms “treatment” and
“therapy” may be used
interchangeably. The word
“intervention” may also be
used to describe a treatment or } children benefit from receiving multiple therapies
therapy.
provided in the same learning format.
We’ve provided
an overview of many different treatment
methods for autism in this section of your kit. The
descriptions are meant to give you general information.
You may find it is helpful to see the different methods
{Therapies include a wide range
of tools, services and teaching
methods you may choose to use
to help your child reach his or }
her potential.
in action so that you can better understand them. The
ASD Video Glossary on the Autism Speaks web site,
www.AutismSpeaks.org, is a great place to start.
Your pediatrician, developmental pediatrician
or a social worker who specializes in the treatment
of children with autism can make suggestions or
Many of the therapy
help you prioritize therapies based on your child’s methods described here are very complex
comprehensive evaluation.
and will require more research on your part before
Once you have narrowed down some choices you get started. Whenever possible, observe the
of appropriate therapies for your child, you will want therapies in action. Talk to experienced parents and
to explore more comprehensive information before make sure you have a thorough understanding of
making a commitment to one. Before beginning any what is involved before beginning any therapy for
therapy, please read the information in this handbook your child.
about “Choosing Providers.”
For many children, autism is complicated by
medical conditions, biological issues and symptoms
that are not exclusive to autism. Children with other
disorders, such as Apraxia, Cerebral Palsy or Celiac
Disease, might require some of the same therapies.
Examples of these treatments are Speech & Language
Therapy, Occupational Therapy, or the care of a
23
Treatment Before you choose an intervention, you will
for need to investigate the claims of each therapy so that
you understand the possible risks and benefits for your
child. At first, all of these techniques, ABA, VB, PRT, DTT,
the Core Symptoms among others, may seem like alphabet soup to you.
You may be confused now, but you will be surprised at
of Autism
how quickly you become “fluent” in the terminology of
autism therapies.
Most families use one type of intensive
intervention that best meets the needs of their
child and their parenting style. The intensive
interventions described here require multiple
hours per week of therapy and address behavioral,
{ Turn to the glossary in this
kit, www.AutismSpeaks.org
and your pediatrician for more
information so that you can
be confident you are making }
developmental, and/or educational goals. They are
informed choices as you begin
developed specifically to treat autism.
to narrow down your options.
During the course of treatment it may be
necessary to reevaluate which method is best for
your child.
{ Therapies are not always
delivered in a “pure format.”
Some intervention providers
who work primarily in one
format may use successful }
techniques from another
format.
Before we get into the types of therapies
available, it’s helpful to take a step back and look
at the bigger picture. Although research and
experience have revealed many of the mysteries
surrounding autism, it remains a complex disorder
that impacts each child differently. However,
many children with autism have made remarkable
breakthroughs with the right combinations of
therapies and interventions.
Most parents would welcome a cure for their
child, or a therapy that would alleviate all of the
symptoms and challenges that make life difficult
for them. Just as your child’s challenges can’t be
summed up in one word, they can’t be remedied
with one therapy. Each challenge must be addressed
with an appropriate therapy.
No single therapy works for every child. What
works for one child may not work for another. What
works for one child for a period of time may stop
working. Some therapies are supported by research
showing their efficacy, while others are not. The
skill, experience and style of the therapist are critical
to the effectiveness of the intervention.
24
Applied Behavioral in a variety of settings. Each time the child achieves
the desired result, he receives positive reinforcement,
Analysis (ABA)
such as verbal praise or something that the child
finds to be highly motivating.
ABA programs often include support for
the child in a school setting with a one-on-one
Behavior analysis was originally described aide to target the systemic transfer of skills to a
by B.F. Skinner in the 1930’s. You may have learned typical school environment. Skills are broken down
about Skinner and “operant conditioning” when you into manageable pieces and built upon so that a
studied science in school. The principles and methods child learns how to learn in a natural environment.
of behavior analysis have been applied effectively in Facilitated play with peers is often part of the
many circumstances to develop a wide range of skills intervention. Success is measured by direct
in learners with and without disabilities.
observation and data collection and analysis - all
critical components of ABA. If the child isn’t making
satisfactory progress, adjustments are made.
What is ABA?
There is a lot of confusion and disagreement
surrounding the use of the term Applied Behavioral
Analysis, or ABA. Since the early 1960’s, hundreds of
behavior analysts have used positive reinforcement What is the difference
in a repetitive manner to teach communication, play, between ABA and Verbal Behavior
social, academic, self-care, work and community living and Pivotal Response Treatment?
skills and to reduce problem behaviors in learners with
Verbal Behavior and Pivotal Response
autism. During this time, different models using ABA Treatment therapies are different forms of ABA
have emerged, all of which use behavioral teaching. with different emphasis and techniques. All of
They are all based on Skinner’s work. Many of them these methods use the three step process described
use the research and techniques of other experts in previously.
the field of using behavioral analysis to teach children
with autism.
ABA is often difficult to understand until you
see it in action. It may be helpful to start by describing Who provides ABA?
what all of the different methods of ABA have in
A board certified behavior analyst specializ-
ing in autism will write, implement and monitor
common. ABA methods use the following three step the child’s individualized program. Individual
process to teach:
therapists, often called “trainers,” (not necessarily
• An antecedent, which is a verbal or physical board certified) will work directly with the child on a
stimulus such as a command or request. This may day-to-day basis.
come from the environment or from another person,
or be internal to the subject;
• A resulting behavior, which is the subject’s (or
in this case, the child’s) response or lack of response;
What is a typical ABA therapy
• And a consequence, which depends on session like?
the behavior. The consequence can include positive
Sessions are 2 to 3 hours long, consisting of
reinforcement of the desired behavior or no response short periods of structured time devoted to a task,
for incorrect response.
usually lasting 3 to 5 minutes. 10 to 15 minute breaks
ABA is sometimes referred to as the Lovaas are taken at the end of every hour. Free play and
Model, for its pioneer, Dr. Ivar Lovaas, or Discrete Trial breaks are used for incidental teaching or practicing
Teaching (DTT), for its primary teaching technique. skills in new environments.
ABA targets the learning of skills and the reduction of
challenging behaviors.
Most ABA programs are highly-structured.
Targeted skills and behaviors are based on an established What is the intensity of most
curriculum. Each skill is broken down into small ABA programs?
steps, and taught using prompts, which are gradually
35 to 40 hours per week. Families are
eliminated as the steps are mastered. The child is given encouraged to use ABA principals in their daily lives.
repeated opportunities to learn and practice each step
25
Where can I find more Who provides PRT?
information on ABA?
Psychologists, special education teachers,
The Association for Behavior Analysis International
speech therapists and other providers specifically
www.ABAinternational.org
trained in PRT. The Koegel Autism Center offers a PRT
Behavior Analyst Certification Board
Certification program.
www.BACB.com
Pivotal Response What is a typical PRT therapy
session like?
Treatment
Each program is tailored to meet the goals
and needs of the child as well as family routines.
A session typically involves six segments during
Pivotal Response Treatment, or PRT, was which language, play and social skills are targeted
developed by Dr. Robert L. Koegel, Dr. Lynn Kern in structured and unstructured formats. Sessions
Koegel and Dr. Laura Shreibman, at the University change to accommodate more advanced goals and the
of California, Santa Barbara. Pivotal Response changing needs as the child develops.
Treatment was previously called the Natural
Language Paradigm (NLP), which has been in
development since the 1970s. It is a behavioral What is the intensity of a PRT
intervention model based on the principles of ABA.
program?
What is PRT?
PRT programs usually involve 25 or more
hours per week. Everyone involved in the child’s life is
PRT is used to teach language, decrease encouraged to use PRT methods consistently in every
disruptive/self-stimulatory behaviors, and increase part of the child’s life. PRT has been described as a
social, communication, and academic skills by lifestyle adopted by the affected family.
focusing on critical, or “pivotal,” behaviors that
affect a wide range of behaviors. The primary pivotal
behaviors are motivation and child’s initiations of Where can I find more
communications with others.
The goal of PRT is to produce positive changes information on PRT?
UCSB Koegel Autism Center
in the pivotal behaviors, leading to improvement in www.Education.UCSB.edu/autism
communication skills, play skills, social behaviors UCSD Autism Research Program
and the child’s ability to monitor his own behavior. http://psy3.ucsd.edu/~autism/prttraining.html
Unlike the Discrete Trial Teaching (DTT) method of
teaching, which targets individual behaviors, based
on an established curriculum, PRT is child directed.
Motivational strategies are used throughout Verbal Behavior
intervention as often as possible. These include the
variation of tasks, revisiting mastered tasks to ensure
Another behavioral (based on the principles
of ABA) therapy method with a different approach
the child retains acquired skills, rewarding attempts, to the acquisition and function of language is Verbal
and the use of direct and natural reinforcement. The Behavior (VB) therapy.
child plays a crucial role in determining the activities
and objects that will be used in the PRT exchange. For
example, a child’s purposeful attempts at functional
communication are rewarded with reinforcement What is VB?
related to their effort to communicate (for example,
In his 1957 book, “Verbal Behavior,” B.F. Skinner
if a child attempts a request for a stuffed animal, the (see previous section on ABA) detailed a functional
child receives the animal).
analysis of language. He described all of the parts of
language as a system. Verbal Behavior uses Skinner’s
analysis as a basis for teaching language and shaping
behavior.
26
Skinner theorized that all language could be
grouped into a set of units, which he called operants. Floortime (DIR)
Each operant identified by Skinner serves a different
Floortime is a specific therapeutic technique
function. The most important of these operants, or units, based on the Developmental Individual Difference
he named echoics, mands, tacts and intraverbals:
Relationship Model (DIR) developed in the 1980s by
The function of a “mand” is to request or obtain Dr. Stanley Greenspan. The premise of Floortime is
what is wanted. For example, the child learns to say that an adult can help a child expand his circles of
the word “cookie” when he is interested in obtaining a communication by meeting him at his developmen-
cookie. When given the cookie, the word is reinforced tal level and building on his strengths. Therapy is
and will be used again in the same context. In a VB often incorporated into play activities – on the floor.
program the child is taught to ask for the cookie anyway
The goal of Floortime is to help the child
he can (vocally, sign language, etc.). If the child can reach six developmental milestones that contribute
echo the work he will be motivated to do so to obtain to emotional and intellectual growth:
the desired object.
• Self regulation and interest in the world
The operant for labeling an object is called a
• Intimacy or a special love for the world
“tact.” For example, the child says the word “cookie”
of human relations
when seeing a picture and is thus labeling the item. In
• Two-way communication
VB, more importance is placed on the mand than on
• Complex communication
the tact, theorizing that “using language” is different
• Emotional ideas
from “knowing language.”
• Emotional thinking
An “intraverbal” describes conversational
or social, language. Intraverbals allow children to
In Floortime, the therapist or parent engages
discuss something that isn’t present. For example, the child at a level the child currently enjoys, enters
the child finishes the sentence, “I’m baking…” with the the child’s activities, and follows the child’s lead.
intraverbal fill-in “Cookies.” Intraverbals also include From a mutually shared engagement, the parent
responses to questions from another person, usually is instructed how to move the child toward more
answers to “wh-“ questions (Who? What? When? increasingly complex interactions, a process known
Where? Why?). Intraverbals are strengthened with as “opening and closing circles of communication.”
social reinforcement.
Floortime does not separate and focus on speech,
VB and classic ABA use similar behavioral motor, or cognitive skills but rather addresses these
formats to work with children. VB is designed to areas through a synthesized emphasis on emotional
motivate a child to learn language by developing a development. The intervention is called Floortime
connection between a word and its value. VB may be because the parent gets down on the floor with
used as an extension of the communication section of the child to engage him at his level. Floortime
an ABA program.
is considered an alternative to and is sometimes
Who
delivered in combination with behavioral therapies.
provides VB?
VB is provided by VB-trained psychologists, Who
special education teachers, speech therapists and other
provides Floortime?
Parents and caregivers are trained to
providers.
implement the approach. Floortime-trained
What
psychologists, special education teachers, speech
is the intensity of most VB therapists, occupational therapists may also use
Floortime techniques.
programs?
VB programs usually involve 30 or more hours
per week of scheduled therapy. Families are encoura- What is a typical Floortime
ged to use VB principals in their daily lives.
therapy session like?
Where can I find more In Floortime, the parent or provider joins
in the child’s activities and follows the child’s lead.
information on VB?
The parent or provider then engages the child in
increasingly complex interactions. During the
Cambridge Center for Behavioral Studies
preschool program, Floortime includes integration
www.behavior.org/vb/
with typically developing peers.
27
What is the intensity of most Foresight and Hindsight: The ability to reflect
on past experiences and anticipate potential future
Floortime programs?
scenarios in a productive manner.
The program involves a systematic approach
Floortime is usually delivered in a low to working on building motivation and teaching skills,
stimulus environment, ranging from two to five focusing on the child’s current developmental level
hours a day. Families are encouraged to use the of functioning. Children begin work in a one-on-one
principals of Floortime in their day to day lifestyle.
setting with a parent. When they are ready, they are
matched with a peer at a similar level of relationship
Where can I find more development to form a “dyad.” Gradually additional
children are added to the group and the number of
information on Floortime?
settings in which children practice in order to help
Floortime Foundation
the child form and maintain relationships in different
www.Floortime.org
contexts.
Stanley Greenspan
www.StanleyGreenspan.com
Who provides RDI?
Interdisciplinary Council on Developmental and
Parents, teachers and other professionals
Learning Disorders
can be trained to provide RDI. Parents may choose
www.ICDL.com
to work together with an RDI-certified consultant.
RDI is somewhat unique because it is designed to be
Relationship
implemented by parents. Parents learn the program
through training seminars, books and other materials
and can collaborate with an RDI-certified consultant.
Development
Some specialized schools offer RDI in a private school
setting.
Intervention (RDI) What is a typical RDI therapy
Like other therapies described in this session like?
handbook, RDI is a system of behavior modification
through positive reinforcement. RDI was developed
In RDI, the parent or provider uses a
by Dr. Steven Gutstein as a parent-based treatment comprehensive set of step-by-step, developmentally
using dynamic intelligence. The goal of RDI is to appropriate objectives in everyday life situations,
improve the individual’s long-term quality of life by based on different levels, or stages, of ability. Spoken
helping them improve their social skills, adaptability language may be limited in order to encourage eye
and self-awareness. The six objectives of RDI are:
contact and non-verbal communication. RDI may also
Emotional Referencing: The ability to use be delivered in a specialized school setting.
an emotional feedback system to learn from the
subjective experiences of others.
Social Coordination: The ability to observe What is the intensity of most
and continually regulate one’s behavior in order to RDI programs?
participate in spontaneous relationships involving
collaboration and exchange of emotions.
Families use the principles of RDI in their day to
day lifestyle.
Declarative Language: Using language and
non-verbal communication to express curiosity,
invite others to interact, share perceptions and Where can I find more
feelings and coordinate your actions with others.
Flexible thinking: The ability to rapidly information on RDI?
adapt, change strategies and alter plans based upon Connections Center
changing circumstances.
www.RDIconnect.com
Relational Information Processing: The
ability to obtain meaning based upon the larger
context; Solving problems that have no “right-and-
wrong” solutions.
28
Training and
Who provides TEACCH?
Education of
TEACCH is available at the TEACCH centers in
North Carolina and by TEACCH-trained psychologists,
special education teachers, speech therapists and
Autistic and Related TEACCH providers in other areas of the country.
Communication
Where can I find more
information on TEACCH?
Handicapped
TEACCH Autism Program
www.TEACCH.com
Children
(TEACCH)
Social
TEACCH is a special education program, Communication/
developed by Eric Schopler, PhD and colleagues at
the University of North Carolina, in the early 1970s. Emotional
TEACCH’s intervention approach is called “Structured
Teaching.”
Structured Teaching is based on what TEACCH Regulation/
calls the “Culture of Autism.” The Culture of Autism
refers to the relative strengths and difficulties shared
by people with autism that are relevant to how they Transactional
learn. Structured Teaching is designed to capitalize
on the relative strength and preference for processing Support (SCERTS)
information visually, while taking into account the
recognized difficulties.
SCERTS is an educational model developed
Children with autism are assessed to identify by Barry Prizant, PhD, Amy Wetherby, PhD, Emily
emerging skills and work then focuses on these to Rubin and Amy Laurant. SCERTS uses practices from
enhance them. In Structured Teaching, an individualiz- other approaches including ABA (in the form of
ed plan is developed for each student rather than PRT), TEACCH, Floortime and RDI. The SCERTS Model
using a standard curriculum. The plan creates a highly- differs most notably from the focus of “traditional”
structured environment to help the individual map ABA, by promoting child-initiated communication in
out activities. The physical and social environment is everyday activities. SCERTS is most concerned with
organized using visual supports so that the child can helping children with autism to achieve “Authentic
more easily predict and understand daily activities and Progress,” which is defined as the ability to learn
respond in appropriate ways. Visual supports are also and spontaneously apply functional and relevant
used to make individual tasks understandable.
skills in a variety of settings and with a variety of
partners.
What
The acronym “SCERTS” refers to the focus on:
does TEACCH look like?
“SC” Social Communication - Development of
TEACCH programs are usually conducted in a spontaneous, functional communication, emotional
classroom setting. TEACCH-based home programs are expression and secure and trusting relationships
also available and are sometimes used in conjunction with children and adults.
with a TEACCH-based classroom program. Parents work
with professionals as co-therapists for their children so “ER” Emotional Regulation - Development of the
that techniques can be continued at home.
ability to maintain a well-regulated emotional
state to cope with everyday stress, and to be most
available for learning and interacting.
29
“TS” Transactional Support - Development
and
implementation of supports to help partners
respond to the child’s needs and interests, modify
and adapt the environment, and provide tools to
enhance learning (e.g., picture communication,
written schedules, and sensory supports).
Specific plans are also developed to provide
educational and emotional support to families, and
to foster teamwork among professionals.
What does a SCERTS session
look like?
The SCERTS Model favors having children
learn with and from children who provide good
social and language models in inclusive settings
as much as possible. SCERTS is implemented using
transactional supports implemented by a team,
such as environmental accommodations, learning
supports (schedules or visual organizers).
Who provides SCERTS?
SCERTS is usually provided in a school setting
by SCERTS-trained special education teachers,
speech therapist.
Where can I find more
information on SCERTS?
SCERTS
www.SCERTS.com
Barry Prizant
www.BarryPrizant.com
30
Treatment Occupational
for Associated,
Therapy (OT)
Occupational Therapy (OT) brings together
Biological &
cognitive, physical and motor skills. The aim of OT is
to enable the individual to gain independence and
participate more fully in life. For a child with autism,
Medical Conditions the focus may be on appropriate play, learning and
basic life skills.
Associated with Autism An occupational therapist will evaluate the
child’s development as well as the psychological,
social and environmental factors that may be
The next section of this handbook covers a involved. The therapist will then prepare strategies
number of what are frequently called “related services.” and tactics for learning key tasks to practice at home,
These services are therapies that address symptoms in school and other settings. Occupational therapy
commonly associated with autism, but not specific to is usually delivered in a half hour to one hour session
the disorder.
with the frequency determined by the needs of the
child.
Speech-Language Goals of an OT program might include
independent dressing, feeding, grooming and use
of the toilet and improved social, fine motor and
Therapy (SLT)
visual perceptual skills.
OT is provided by Certified Occupational
Speech-Language Therapy (SLT) encompasses Therapists.
a variety of techniques and addresses a range of
challenges for children with autism. For instance,
some individuals are unable to speak. Others seem to Sensory Integration
love to talk. They may have difficulty understanding
information or they may struggle to express
themselves.
Therapy (SI)
SLT is designed to coordinate the mechanics of
speech and the meaning and social value of language.
Sensory Integration (SI) therapy is designed
to identify disruptions in the way the individual’s
An SLT program begins with an individual evaluation brain processes movement, touch, smell, sight and
by a speech-language pathologist. The therapy may sound and help them process these senses in a more
then be conducted one-on-one, in a small group or in a productive way. It is sometimes used alone, but is
classroom setting.
often part of an occupational therapy program. It
The therapy may have different goals for is believed that SI does not teach higher-level skills,
different children. Depending on the verbal aptitude but enhances sensory processing abilities, allowing
of the individual, the goal might be to master spoken the child to be more available to acquire higher-level
language or it might be to learn signs or gestures to skills. Sensory Integration therapy might be used to
communicate. In each case, the aim is to help the help calm your child, reinforce a desired behavior or
individual learn useful and functional communication.
to help with transitions between activities.
Speech-language therapy is provided by
Therapists begin with an individual evalua-
Speech-Language Pathologists who specialize in tion to determine what your child’s sensitivities
children with autism. Most intensive therapy programs are. The therapist then plans an individualized
address speech-language therapy as well.
program for the child matching sensory stimulation
with physical movement to improve how the brain
processes and organizes sensory information. The
therapy often includes equipment such as swings,
trampolines and slides.
Certified Occupational and Physical
Therapists provide Sensory Integration Therapy.
31
Physical Therapy Auditory Integration
(PT)
Ther
apy
Physical Therapy (PT) is focuses on any
problems with movement that cause functional
Auditory Integration Therapy (AIT), sometimes
limitations. Children with autism frequently have called Sound Therapy, is sometimes used to treat
challenges with motor skills such as sitting, walking, children with difficulties in auditory processing or
running and jumping. PT can also address poor sound sensitivity.
muscle tone, balance and coordination.
Treatment with AIT involves the patient listening
A physical therapist will start by evaluating to electronically modified music through headphones
the abilities and developmental level of the child. during multiple sessions. There are different methods
Once they identify where the individual’s challenges of AIT, including Tomatis and Berard.
are, they design activities that target those areas. PT
While some individuals have reported
might include assisted movement, various forms of improvements in auditory processing resulting from
exercise and orthopedic equipment.
AIT, there are no credible studies that demonstrate its
Physical therapy is usually delivered in a effectiveness or support its use.
half hour to one hour session by a Certified Physical
Therapist, with the frequency determined by the
needs of the child.
Gluten Free, Casein
Picture Exchange Free Diet (GFCF)
Communication
Many families of children with autism are
interested in dietary and nutritional interventions
that might help some of their children’s symptoms.
System (PECS)
Removal of gluten (a protein found in barley, rye, and
wheat, and in oats through cross contamination) and
casein (a protein found in dairy products), is a popular
Picture Exchange Communication System dietary treatment for symptoms of autism.
(PECS) is a learning system that allows children with
The theory behind this diet is that proteins
little or not verbal ability to communicate using are absorbed differently in some children. Rather
pictures. PECS can be used at home, in the classroom than having an allergic reaction, children who benefit
or a variety of settings. A therapist, teacher or parent from the GFCF diet experience physical and behavioral
helps the child build a vocabulary and articulate symptoms. While there have not yet been sufficient
desires, observations or feelings by using pictures scientific studies to support this theory, many families
consistently.
report that dietary elimination of gluten and casein has
The PECS program starts by teaching the helped regulate bowel habits, sleep activity, habitual
child how to exchange a picture for an object. behaviors and contributed to the overall progress in
Eventually, the individual is shown how to distinguish their individual child.
between pictures and symbols and use them to
Because no specific laboratory tests can predict
form sentences. Although PECS is based on visual which children will benefit from dietary intervention,
tools, verbal reinforcement is a major component many families choose to try the diet with careful
and verbal communication is encouraged.
observation by the family and intervention team.
Standard PECS pictures can be purchased as
Families choosing a trial of dietary restriction
a part of a manual or pictures can be gathered from should make sure their child is receiving adequate
photos, newspapers, magazines or other books.
nutrition. Dairy products are the most common source
of calcium and vitamin D in young children in the U.S.
Many young children depend on dairy products for a
balanced protein intake. Alternative sources of these
nutrients require the substitution of other food and
32
beverage products with attention to the nutritional
content.
Substitution of gluten free products requires
attention to the overall fiber and vitamin content of
a child’s diet. Vitamin supplement use may have both Is there a Cure?
positive effects and side effects. Consultation with a
dietician or physician should by considered and can
be helpful to families in the determination of healthy Is recovery possible?
application of a GFCF diet. This may be especially true
You may have heard about children who
for children who are picky eaters.
have recovered from autism. Experts disagree about
whether or not this is possible.
What
Growing evidence suggests that a small
minority of children with autism have progressed
about
to the point where they no longer meet the criteria
for a diagnosis. The theories behind the recovery of
some children range from the assertion that the child
other medical
was misdiagnosed to the belief that the child had a
form of autism that may resolve as he matures to
interventions?
the opinion that the child benefited from successful
treatment. You may also hear about children who
reach “best outcome” status, which means they
Right now you are eager to do everything score normally on tests for IQ, language, adaptive
possible to help your child. Many parents in your functioning, school placement, and personality,
position are eager to try new treatments, even those but have mild symptoms on some personality and
that have not yet been scientifically proven to be diagnostic tests.
effective. Your hopes for a cure for your child may
Some children who no longer meet the
make you more vulnerable to the lure of untested criteria for an autism diagnosis are later diagnosed as
treatments.
having ADHD, Anxiety or even Asperger Syndrome.
It’s important to remember that just as each
We don’t yet know what percentage of
child with autism presents differently, so is their children with autism will recover, or what genetic,
response to treatments. It may be helpful to collect physiological or developmental factors can predict
information about a therapy that you are interested in which ones will. Recovery from autism is usually
trying and speak with your pediatrician as well as your reported in connection with intensive early
intervention team members, so that you can discuss intervention, but we do not know how much or
the potential risks/benefits and establish measurable which type of intervention works best, or whether
outcomes as well as baseline data.
the recovery can be fully credited to the intervention.
If you talk to the parents of older children with Presently, there is no way of predicting which child-
autism, they can provide a history of therapies and ren will have the best outcomes.
biomedical interventions that have been promised as
In the absence of a cure or even an accurate
a cure for autism over the years. Some of them may prognosis of your child’s future, do not be afraid
have been meaningful for a small number of children. to believe in your child’s potential. Most children
Upon further study, none of them, so far, has turned with autism will benefit from intervention. Many,
out to be a cure for many.
if not most, will make very significant, meaningful
We do know that many children get better progress.
with intensive behavioral therapy. There is a large
body of scientific evidence to support it. For this
reason, it makes sense to focus on getting your child
engaged in an intensive program before looking at
other interventions.
33
Understanding Your
Child’s Learning Style
How do I
From: Does My Child Have Autism?
By Wendy Stone, PhD, & Theresa Foy DiGeronimo, M.Ed
choose the right
Finding the right
intervention program begins with an
intervention?
understanding of your child’s learning style –
The two articles that follow may provide
which is quite different from the learning style
helpful information for choosing between methods
of other children. You probably realize this
of therapies for your child.
as you’ve tried to get your child with autism
to wave bye-bye using the same teaching
strategies you used with your other children
– that is, demonstrating the action, providing
Alleviate Stress by
a verbal prompt by saying “wave by-bye” and
even moving his or her hand to demonstrate
Actively Pursuing the
what to do. But when that approach didn’t
seem to be working, you probably started
Right Intervention
to think that your child was being stubborn
From: Overcoming Autism
or uncooperative. After all, you’re teaching
By Lynn Kern Koegel, PhD and Claire LaZebnik
simple skills using methods that worked very
well for your other children. But the reality is
that your child isn’t being bad; he or she just
has a different learning style from your other
It’s scary to have to ques-
tion your own child’s potential, but the best
children.
way to relieve your fears is to take action with
This difference in learning styles isn’t
productive interventions. The first step is to
apparent only when you try to teach children
be informed. Talk to people you trust-parents
with autism; it’s also evident in the way they
who’ve been there, experts in the field, doctors
learn (or don’t learn) on their own. There are
you have a relationship with, and so on. There
lots of things that children with autism seem to
are a lot of fly-by-night procedures that prey
learn effortlessly, without being taught, but that
on distraught parents who will do anything for
children with autism don’t pick up on as easily.
their child. Make sure that the interventions
For example, young children without autism
you’re using are scientifically sound and well
somehow learn, without explicit teaching, how
documented. Make sure they’ve been tested
to use a pointing gesture to let you know what
with many children with autism and that
they want or to indicate where they want you
they’ve been replicated by other experts and
to look. They learn to follow your point or eye
clinics. Also, make sure you understand their
gaze to figure out what you’re looking at or what
limitations – some interventions only work
you’re interested in. They figure out on their own
on a small number of symptoms or on a small
how to use eye contact and facial expressions to
subgroup of children with autism. If you’re
convey their feelings-as well as to understand
going to spend time and money for interven-
the meaning of your facial expressions and tone
tions, be informed about the degree and extent
of voice. Social-communicative behaviors and
of the change they may bring about.
skills like these just don’t come as naturally to
young children with autism and often need to
be taught explicitly.
34
Assembling Ask for Resumes
Specific things to look for in the resume:
Making it Happen
• Past experience with children with autism
your
approximately the same age as yours.
Team • The amount of experience the therapist has.
• The kind of experience the therapist has had, for
example, whether they have worked in a school
setting or in a private program.
Medic
• Educational background.
• Membership in professional autism organizations.
Your al T
child eam
should be supported by a
If so then they are most likely going to conferences,
pediatrician who understands developmental issues,
thus enhancing their skills in this profession.
who will serve as your child’s primary care provider.
Depending on your child’s needs other medical team
members may include a neurologist, geneticist, Conduct interviews
developmental pediatrician, gastroenterologist,
Conduct a portion of the interview as a “hands
psychiatrist, or nutritionist.
on” interview during which the potential therapist works
with the child, following instructions to implement a
skill acquisition program. It is important to see how
Intensive
the potential therapist takes direction and to see how
flexible they are about changing approaches in their
Intervention Team
teaching. One would want a therapist to potentially
be open to new ideas in their teaching approaches.
ABA, Floortime, PRT, RDI, SCERTS, TEACCH
It’s a good idea to have them bring video of
and VB are all intensive interventions. Depending a therapy session they have conducted with another
on the intensity of the primary intervention there child. It offers yet another view of their teaching skills.
may be an intervention leader and several providers If possible, observe the therapist working with another
or therapists involved in providing the treatment as child.
structured by the leader.
Related-Services Team Check references
Be sure to talk to previous supervisors and to
Speech, Occupational Therapy, Physical other parents the therapists have worked for. Previous
Therapy, or Social Skills instruction are all related supervisors and other parents are often good sources
services. All therapists working with your child for finding additional therapists.
should be communicating frequently, and use a
consistent method of teaching.
Consider a probation period
The therapist should be hired for a probation
period, during which sessions are video taped or
observed directly until the parent and/or the home
coordinator feels comfortable with the therapist and
confident in their abilities.
Hiring
Check clearances
Anyone working with your child will need to
Ther
provide background clearances from the state you live
in to establish that they do not have a criminal record.
If you have chosen a home-based intervention
apists
program for your child, you will probably be required to
For parents hiring new therapists, you submit copies of those clearances to the state, county
may want to consider the candidate as you would or local agency providing services.
any other job applicant and handle the situation
accordingly.
35
Managing
your Team When to be
concerned about
P
a therapist
articipate in tr
Be part of the team. Y aining
our participation in team
From: Overcoming Autism
By Lynn Kern Koegel, PhD and Claire LaZebnik
training is vital so that you can increase your skills to
successfully parent your child and understand the
goals and techniques in his or her program. Knowing
There’s plenty of evidence
the techniques and objectives of your child’s
showing that children with autism do
intervention program will allow you to closely monitor
his or her progress and guide and evaluate the
better when parents are actively involved
members of your team.
in the intervention and when programs are
Intensive intervention programs often start
coordinated. Find programs that encourage
with a one or two day training course where individual
you to be involved – you should be learning all
therapists are trained by the primary intervention
the procedures and coordinating your child’s
leader.
program across every environment. You can’t
do that if you’re being shut out. If a treatment
Establish Team
provider tells you that you can’t watch the
sessions or that your child does better when
Co
you’re not there, this is a RED FLAG. It
may be reasonable for a therapist to request a
mm
There unic
are two atio
impor n
tant ways your team will
few sessions alone to bond with the child, but
communicate. One is through a notebook in which
more than that just doesn’t make sense, and
each therapist records information after their session
the therapist needs to communicate fully with
with your child. Each therapist reads the information
you so that you know exactly what’s going on
recorded since their last session before their next
session with your child. Parents and supervisors can
at all times.
add information to the notebook as needed.
If a clinician tells you that she’s
The other way is through Team Meetings.
not documenting any type of changes be
Team meetings are often held at the home of the
concerned – the only way to evaluate whether
child, especially in the case of intervention programs
a treatment program is working is to analyze
that are home based. These meetings should include
the changes your child is making. Also be wary
as many members of your team as possible. This will
of any therapist who says that he’s working on
ensure your therapists are up to date on every aspect
the “parent-child bond,” and that fixing your
of the program and are all working with your child in
relationship with your child will improve her
a consistent way. At team meetings, you will discuss
behavior.
what is working, as well as where there has not been
In other words, if your therapists
progress so that you can determine whether to make
changes and what those changes will be. Teams
is excluding you, blaming you, or using
usually meet once a month, but may meet more or less
techniques that do not have measurable
often as needed. Many team meetings include time
outcomes, you should consider looking for
for therapists to observe each other in action with
another therapist or agency.
your child and receive feedback on their techniques.
36
Including
your family in your
child’s program
Making Therapies
Work for the Entire
Family
{ How well the family
functions as a whole is just
as important as how well the
child with special needs is }
doing...
From: Overcoming Autism
By Lynn Kern Koegel, PhD and Claire LaZebnik
Always be sure you select
interventionists who will view the family
as teammates and will include you in the
determination of target goals – your child needs
to learn skills that will help the family function,
fit into your lifestyle, and be compatible with
your cultural and religious values. For example,
a clinician may feel that it’s important to work
on answering the phone, while the family may
feel that toilet training is a much more pressing
and immediate goal. Both goals may well be
valid, but the family needs to have a say in
prioritizing them. Similarly, studies show that
families who are required to implement drill-
type interventions have greater stress than
when less rigid interventions are incorporated
into daily family routines.
How well the family functions as a
whole is just as important as how well the
child with special needs is doing, and it’s your
responsibility to work toward both kinds of
success.
37
Suggested (Publisher: Broadway; 1 edition, 2006)
Does my Child Have Autism?: A Parent’s Guide to Early
Rea
Detection and Intervention in Autism Spectrum Disorders
By Wendy L. Stone, Ph.D. and Theresa Foy Digeroni-
mo, MED(Publisher: Jossey-Bass; 1 edition, 2006)
Facing Autism: Giving Parents Reasons for Hope and
Differ ding
ent books and web sites resonate with
Guidance for Help
different families; here are some that parents have
By Lynn M. Hamilton
recommended. For a more complete list of books and (Publisher: WaterBrook Press; 1 edition, 2000)
web sites, as well as magazines, products, and DVDs
please visit our Resource Library on the Autism Speaks Let Me Hear Your Voice
web site, www.AutismSpeaks.org.
By Catherine Maurice
(Publisher: Ballantine Books, 1994)
Boo
Nourishing Hope
by Julie Matthews
1001 Gr ks
eat Ideas for Teaching and Raising Children with
(www.NourishingHope.com)
Autism Spectrum Disorder
By Veronica Zysk and Ellen Notbohm
Overcoming Autism: Finding the Answers, Strategies, and
(Publisher: Future Horizons; 1 edition, 2004)
Hope That Can Transform a Child’s Life
By Lynn Kern Koegel, PhD Claire LaZebnik
A Parent’s Guide to Asperger Syndrome & High-Functioning (Publisher: Penguin /Non-Classics, 2005)
Autism
By Sally Ozonoff, Ph.D., Geraldine Dawson, Ph.D.,
Playing, Laughing, and Learning with Children on the
James McPartland
Autism Spectrum: A Practical Resource of Play Ideas for
(Publisher: The Guildford Press; 1 edition, 2002)
Parents and Caregivers
By Julia Moor
Activity Schedules for Children with Autism: Teaching
(Publisher: Jessica Kingsley Publishers; 1 edition,
Independent Behavior
2002)
By Lynn E., McClannahan, Ph.D. and Patricia J. Krantz,
PhD, (Publisher: Woodbine House; 1 edition, 1999)
Siblings of Children with Autism: A Guide for Families
By Sandra L. Harris, PhD and Beth A. Glasberg, Ph.D.
The Autism Sourcebook
(Publisher: Woodbine House, 1994)
By Karen Siff Exkorn
(Publisher: Collins; 1 edition, 2005)
Special Diets for Special People: Understanding and Imple-
menting a Gluten-Free and Casien-Free Diet to Aid in the
Autism Spectrum Disorders: The Complete Guide
Treatment of Autism and Related Developmental Disorders
By Chantal Sicile-Kira
By Lisa S. Lewis
(Publisher: Vermilion, 2003)
(Publisher: Future Horizons, 2005)
Changing the Course of Autism: A Scientific Approach for
Parents and Physicians
Books for Children
By Brian Jepson, M.D. and Jane Johnson (Publisher:
Sentient Publications; 1 edition 2007)
Everybody is Different: A Book for Young People who have
Brothers or Sisters with Autism
By Fiona Bleach
Children with Autism: A Parent’s Guide
(Reading Level: Ages 4-8, Publisher: Autism
By Michael D. Powers
Asperger Publishing Company, 2002)
(Publisher: Woodbine House; 2 Sub edition, 2000)
Could it Be Autism? A Parent’s Guide to the First Signs and The Autism Acceptance Book, Being a Friend to Someone
Next Steps
with Autism
By Ellen Sabin
By Nancy Wiseman
(Reading Level: Ages 9-12, Publisher: Watering Can
Press; 1 edition, 2006)
38
Ten Things
Websites
Every Child with
Autism Speaks
www.AutismSpeaks.org
Autism Wishes You
Autism Society of America
Knew
www.Autism-Society.org
From Ten Things Every Child with Autism Wishes You Knew
by Ellen Notbohm
First Signs
Some days it seems the only predictable
www.FirstSigns.org
thing about it is the unpredictability. The only consistent
attribute -- the inconsistency. There is little argument on
Interactive Autism Network
any level but that autism is baffling, even to those who
spend their lives around it. The child who lives with autism
www.ianproject.org
may look “normal” but his behavior can be perplexing and
downright difficult.
Organization for Autism Research
www.ResearchAutism.org
Autism was once thought
an “incurable” disorder, but that notion is
crumbling in the face knowledge and understanding that
National Autism Association
is increasing even as you read this. Every day, individuals
www.NationalAutismAssociation.org
with autism are showing us that they can overcome,
compensate for and otherwise manage many of autism’s
most challenging characteristics. Equipping those around
Unlocking Autism
our children with simple understanding of autism’s most
www.UnlockingAutism.org
basic elements has a tremendous impact on their ability to
journey towards productive, independent adulthood.
Autism Research Institute
Autism is an extremely complex
www.Autism.com
disorder but for purposes of this one article, we
can distill its myriad characteristics into four fundamental
areas: sensory processing challenges, speech/language
delays and impairments, the elusive social interaction skills
and whole child/self-esteem issues. And though these four
elements may be common to many children, keep front-
of-mind the fact that autism is a spectrum disorder: no two
(or ten or twenty) children with autism will be completely
alike. Every child will be at a different point on the
spectrum. And, just as importantly – every parent, teacher
and caregiver will be at a different point on the spectrum.
Child or adult, each will have a unique set of needs.
39
Here are ten things every child with
from windows, too many items for me to be able to focus
autism wishes you knew:
(I may compensate with “tunnel vision”), moving fans on
the ceiling, so many bodies in constant motion. All this
affects my vestibular and proprioceptive senses, and now
1.
I can’t even tell where my body is in space.
I am first and foremost a child.
I have autism. I am not primarily “autistic.” My
autism is only one aspect of my total character. It does not
3. Please remember to distinguish
define me as a person. Are you a person with thoughts,
between won’t (I choose not to) and
feelings and many talents, or are you just fat (overweight),
myopic (wear glasses) or klutzy (uncoordinated, not good
can’t (I am not able to). Receptive and expressive
at sports)? Those may be things that I see first when I meet
language and vocabulary can be major challenges for
you, but they are not necessarily what you are all about.
me. It isn’t that I don’t listen to instructions. It’s that
I can’t understand you. When you call to me from
As an adult, you have some control over how you define
across the room, this is what I hear: “*&^%$#@, Billy.
yourself. If you want to single out a single characteristic,
#$%^*&^%$&*………” Instead, come speak directly to
you can make that known. As a child, I am still unfolding.
me in plain words: “Please put your book in your desk,
Neither you nor I yet know what I may be capable of.
Billy. It’s time to go to lunch.” This tells me what you
Defining me by one characteristic runs the danger of setting
want me to do and what is going to happen next. Now
up an expectation that may be too low. And if I get a sense
it is much easier for me to comply.
that you don’t think I “can do it,” my natural response will
be: Why try?
4. I am a concrete thinker. This
means I interpret language very literally. It’s very
2. My sensory perceptions are
confusing for me when you say, “Hold your horses,
disordered.
cowboy!” when what you really mean is “Please stop
Sensory integration may be the most
running.” Don’t tell me something is a “piece of cake”
difficult aspect of autism to understand, but it is arguably
when there is no dessert in sight and what you really
the most critical. It his means that the ordinary sights,
mean is “this will be easy for you to do.” When you say
sounds, smells, tastes and touches of everyday that you may
“Jamie really burned up the track,” I see a kid playing
not even notice can be downright painful for me. The very
with matches. Please just tell me “Jamie ran very fast.”
environment in which I have to live often seems hostile. I
may appear withdrawn or belligerent to you but I am really
Idioms, puns, nuances, double entendres, inference,
just trying to defend myself. Here is why a “simple” trip to
metaphors, allusions and sarcasm are lost on me.
the grocery store may be hell for me:
My hearing may be hyper-acute. Dozens of people are
5. Please be patient with my
talking at once. The loudspeaker booms today’s special.
Musak whines from the sound system. Cash registers
limited vocabulary. It’s hard for me to tell you
beep and cough, a coffee grinder is chugging. The meat
what I need when I don’t know the words to describe
cutter screeches, babies wail, carts creak, the fluorescent
my feelings. I may be hungry, frustrated, frightened
lighting hums. My brain can’t filter all the input and I’m in
or confused but right now those words are beyond my
overload!
ability to express. Be alert for body language, withdrawal,
agitation or other signs that something is wrong.
My sense of smell may be highly sensitive. The fish at the
meat counter isn’t quite fresh, the guy standing next to
Or, there’s a flip side to this: I may sound like a “little
us hasn’t showered today, the deli is handing out sausage
professor” or movie star, rattling off words or whole
samples, the baby in line ahead of us has a poopy diaper,
scripts well beyond my developmental age. These are
they’re mopping up pickles on aisle 3 with ammonia….I
messages I have memorized from the world around me
can’t sort it all out. I am dangerously nauseated.
to compensate for my language deficits because I know
I am expected to respond when spoken to. They may
Because I am visually oriented (see more on this below),
come from books, TV, the speech of other people. It
this may be my first sense to become overstimulated. The
is called “echolalia.” I don’t necessarily understand the
fluorescent light is not only too bright, it buzzes and hums.
context or the terminology I’m using. I just know that it
The room seems to pulsate and it hurts my eyes. The pulsating
gets me off the hook for coming up with a reply.
light bounces off everything and distorts what I am seeing
-- the space seems to be constantly changing. There’s glare
40
6. Because language is so difficult
for me, I am very visually oriented.
Try to remember that all behavior is a form of
Please
communication. It tells you, when my words cannot, how I
show me how to do something rather than just telling
perceive something that is happening in my environment.
me. And please be prepared to show me many times.
Lots of consistent repetition helps me learn.
Parents, keep in mind as well: persistent behavior may have an
underlying medical cause. Food allergies and sensitivities, sleep
A visual schedule is extremely helpful as I move through
disorders and gastrointestinal problems can all have profound
my day. Like your day-timer, it relieves me of the stress
effects on behavior.
of having to remember what comes next, makes for
smooth transition between activities, helps me manage
my time and meet your expectations.
10. Love me unconditionally.
Banish thoughts like, “If he would just……” and “Why
I won’t lose the need for a visual schedule as I get older,
can’t she…..” You did not fulfill every last expectation your
but my “level of representation” may change. Before I
parents had for you and you wouldn’t like being constantly
can read, I need a visual schedule with photographs or
reminded of it. I did not choose to have autism. But
simple drawings. As I get older, a combination of words
remember that it is happening to me, not you. Without
and pictures may work, and later still, just words.
your support, my chances of successful, self-reliant
adulthood are slim. With your support and guidance, the
7.
possibilities are broader than you might think. I promise
Please focus and build on
you – I am worth it.
what I can do rather than what I can’t do.
Like any other human, I can’t learn in an environment
where I’m constantly made to feel that I’m not good
And finally, three words: Patience.
enough and that I need “fixing.” Trying anything new
Patience. Patience. Work to view my autism as
when I am almost sure to be met with criticism, however
a different ability rather than a disability. Look past what
“constructive,” becomes something to be avoided. Look
you may see as limitations and see the gifts autism has
for my strengths and you will find them. There is more
given me. It may be true that I’m not good at eye contact or
than one “right” way to do most things.
conversation, but have you noticed that I don’t lie, cheat at
games, tattle on my classmates or pass judgment on other
8.
people? Also true that I probably won’t be the next Michael
Please help me with social
Jordan. But with my attention to fine detail and capacity
interactions. It may look like I don’t want to play
for extraordinary focus, I might be the next Einstein. Or
with the other kids on the playground, but sometimes it’s
Mozart. Or Van Gogh.
just that I simply do not know how to start a conversation
or enter a play situation. If you can encourage other
They had autism too.
children to invite me to join them at kickball or shooting
baskets, it may be that I’m delighted to be included.
The answer to Alzheimer’s, the enigma of extraterrestrial
life -- what future achievements from today’s children
I do best in structured play activities that have a clear
with autism, children like me, lie ahead?
beginning and end. I don’t know how to “read” facial
expressions, body language or the emotions of others, so
All that I might become won’t happen without you as my
I appreciate ongoing coaching in proper social responses.
foundation. Be my advocate, be my friend, and we’ll see
For example, if I laugh when Emily falls off the slide,
just how far I can go.
it’s not that I think it’s funny. It’s that I don’t know the
proper response. Teach me to say “Are you OK?”
©2005 Ellen Notbohm
9. Try to identify what triggers
my meltdowns. Meltdowns, blow-ups, tantrums
or whatever you want to call them are even more horrid
for me than they are for you. They occur because one
or more of my senses has gone into overload. If you
can figure out why my meltdowns occur, they can be
prevented. Keep a log noting times, settings, people,
activities. A pattern may emerge.
41
A Week by Contacts
100 Da
Week Plan A section for service providers, caregivers and others
Schedules
A section for therapy times, program start and end
for the
dates, deadlines
Diagnosis
y
Next 100 A section for medical documents and any prescrip- s A
tions
Days
Therapy
ctio
A section for Speech, Occupational Therapy, SI, and
so on (Multiple or sub sections may be necessary)
Individual Family Service Plan
n P
(IFSP)
Getting
A section for your child’s IFSP and related docu-
ments (For children under three years of age)
lan
Organized
Individualized Education Plan
(IEP) A section for your child’s IEP and related
documents (For children older than three years)
The first thing you will need to do
is get yourself organized. You may already find
you’ve accumulated a lot of paperwork about your
child and about autism in general. Organizing the
information and records that you collect for your We
phone ’ve
log
inc
and w
luded a sample contact list,
child is an important part of managing his or her
eekly planner in this kit so you can copy
care and progress. If you set up a simple system, and use them as needed. You may also want to summarize
things will be much easier over time. You may your child’s progress in therapy and at school with cover
need to stop by an office supply store to pick up a sheets in each section; sample summary sheets are also in
binder, dividers, some spiral notebooks, loose leaf the Resources Section.
paper or legal pads and pens.
U
sing y
The
our
time fr
W
ame and eekl
action y P
items lanner
The Binders
will vary depend-
ing on your child’s symptoms, your child’s age, where you
Many parents find
live and what you have already accomplished.
that binders
Even if you are very on top of this, it may take a
are a great tool for keeping the mountains of while to be able to access additional evaluations and the
paperwork down to a more manageable, mole hill services that your child needs.
size and for sharing information. You may want to
organize by subject or by year. In either case, here
are some of the subjects that you are likely to want
to have at your fingertips:
Start now.
Week 1
Week 2
Complete Evaluations
Getting Support
If your child has not had a complete work up, Find a support group or a parent mentor. If your child is
schedule the remainder of necessary evaluations in school, you may also want to find out if your district
(see Getting Services below).
has a Special Education Parent Teacher Association
(SEPTA), which may offer informational meetings and
parent outreach.
Getting Services
If your child is younger than three, you’ll start with
Early Intervention (EI) often through your state
Getting Services (Follow Up)
department of health. If your child is three or older, Follow up on services. Continue to check status on
you’ll start with your local school district. Call to waiting lists and available programs.
begin the process of getting services. EI or your
school district may want to conduct evaluations
of your child (at their expense). This can be a long
Research Treatment Options
Start to read material, join online groups and ask
and time consuming process, but may be useful in questions that will help you understand the treatment
further determining the services that are needed.
options that are available and what might be right for
your child and your family.
Keep a Phone Log
Try to set aside some time each day to make the
phone calls necessary to set up the evaluations
and to start the process of getting services. There
may be a waiting list for services and evaluations,
so make the calls as soon as possible and follow
up as needed—and don’t hesitate to put your
name on multiple lists so you can get the earliest
appointment possible. Some of the professionals
who provide services through Early Intervention or
Special Education may take a specified number of
days to complete evaluations or begin services.
Week 3
Start a Video Record
Try a variety of settings and show a range of behavior.
Note both good and not-so-good behavior so that,
Getting Services (Continue to
in the future, you will be able to recognize where Follow Up)
your child was at that point in time. Make a new Follow up on services. Continue to check status on
recording every three months at home, in therapy waiting lists and available programs. Keep using your
sessions, wherever. These video “snapshots” can be phone log to record the dates you contacted service
used to track your child’s progress and help show providers and track when you may need make another
what effect a particular therapy or intervention may call.
have had. Label the tapes or discs with your child’s
name and the dates they were recorded.
Play with Your Child
Play with your child. Play is an important part of any
child’s development, and is a critical part of learning
socialization for a child with autism. We’ve included
a very helpful article, Ideas for Purposeful Play, from
the University of Washington’s Autism Center that
illustrates how to include useful play activities, which
will help your child learn.
Set Aside Sibling Time
The siblings of children with autism are affected by Week 5
the disorder as well. Consider spending time talking
together about their feelings. Start a “Joy Museum”
together of happy memories. Talking about these
Continue Building Your Team
times can help them remember that their lives involve See Week 4.
a lot more than autism.
Review Your Insurance
Investigate your insurance coverage to see what
if any therapies are covered and make sure that
you are getting the most from your provider. Your
health insurance may cover therapies or services not
covered by your child’s IFSP or IEP. You may need to
create a separate binder to keep track of insurance
claims. Document everything.
Get to know Your Child’s
Week 4
Legal Rights
Familiarize yourself with your child’s rights. There is
Build Your Team
a wealth of information available. You may find out
By this time, your child’s team of therapists, educators your child is entitled to services you weren’t aware
and caregivers is probably taking shape. Continue to of or hadn’t considered.
look for service providers and observe as many therapy
sessions as possible to identify new recruits for your
child’s team. Talk to other parents who may know
Do Something for You
of therapists with time available for your child. You You’ve made it through a month, and it may have
don’t have to wait until every member of the team is been one of the most challenging months of your
in place before beginning therapy.
life. Remember to take care of yourself. Remember
who you were before the diagnosis. Spend some
time on an activity that you enjoy. You will find it
Create a safety plan
helps you face the challenges ahead. There are
You may already have had to adapt your home because probably friends and family in your life who would
of your child’s behaviors or needs. You’ve probably love to help, but may not know what you need.
already read the section of this kit called Create a Don’t be afraid to ask for help.
Safety Plan. If not, carve out some time to survey your
home for possible problems and begin contacting
local safety personnel to plan ahead to ensure your
child’s safety.
Plan some Time Away
Plan some time away from your child. You will do
a better job helping your family if you take care of
yourself. Even if it’s just going for a walk alone, you
are going to need a break so that you can come back
with a clear head.
Week 6
Week 7
Continue to Research
Become Competent in the
Treatment Options
Intervention Methods you have
Continue to research treatment options. If possible,
go to a workshop or look for additional information Chosen for Your Child
online.
Take advantage of parent training. Therapists often
Connect with Other Parents provide parent training that will help bring the meth-
ods used at therapy into your home and help your
Go to a support group or spend some time with a child’s progress.
parent who can help you along your journey. You’ll
learn a lot and being around people who know what
you are going through will help you stay strong.
Create a Schedule
Having a written weekly schedule for your child’s
Find Childcare
therapy schedule will help you see if you’ve scheduled
your time well. It will also help you plan for the other
Get a baby-sitter. Look into qualified baby-sitting members of your household.
services and respite care. Don’t wait until you’re
desperate—find someone you’re comfortable with
and plan a night out. If you already have a great
Continue Learning about
baby-sitter, invite her or him to spend some time Treatments & Services
with you and your child so they can adjust to the Continue research on treatments and services. Con-
new techniques your family is using at home.
sult the Autism Speaks web site for contacts in your
area.
Build your Team
Continue to follow up on services and research any
Spend some time organizing
new possible providers.
your paperwork
Schedule a Team Meeting
Organize any paperwork that may have piled up. Try
to eliminate any materials you won’t need.
If you’ve built a team of therapists, you may want
to call a meeting to establish procedures and goals
and open lines of communication. You’ll also want
to continue observing therapy sessions and using
what you learn at home. If it’s difficult to schedule a
time for the service providers to meet in person, you
may want to schedule a conference call instead.
Week 8
Check your Progress
Look back through this action item list. Is there
anything you started that needs follow up?
Investigate Recreational
Continue to Connect with
Activities for Your Child
Other Parents
Add a recreational activity, such as gymnastics or Stay active with a support group or, if possible,
swimming, to broaden your child’s development.
socialize with other parents of children with Autism.
Being around other adults who understand what
Plan more Sibling Time
your family is going through will help you stay
strong.
Your typically-developing children will no doubt
be richer for having a sibling with Autism. But
maintaining as much normalcy as possible will help
Check in on Your Child’s
them reach their potential too.
Sessions
Make Contact with Friends and Continue to observe therapy. Your child should be
getting used to their therapy routine at this point.
Family
Stay connected. Make contact with your friends and
Play with Your Child
family and participate in community events. Keeping Play with your child. Continue to use the strategies
up your social life will help you safeguard against you’ve learned from parent training sessions and
feelings of isolation.
other resources.
Spend Time Alone with Your
Spouse
Plan a relaxing and fun activity with your partner.
After all, you’ve just made it through month two.
Week 10
Schedule a Team Meeting
It’s team meeting time again. Schedule a meeting
to discuss progress and strategies. Stay involved
Week 9
with your team by continuing to attend as many
sessions as possible.
Rally the Troops
Round out Your Team
Encourage your team. Let them know you appreciate
Continue to evaluate service providers and therapists. everything they are doing for your child.
Use the Internet
Plan a Family Outing
Get e-savvy. Spend time researching online resources Plan a family outing. Schedule an activity designed
that will keep you up-to-date. Add useful Web sites to include your child with autism and utilize
to your favorites, register for e-newsletters and join strategies you’ve picked up from therapy. Ask your
list-servs where parents and professionals share child’s therapist to help you with specific strategies
information.
to make the outing a success.
Brush up on the Law
Continue Connecting with
Continue to learn about your child’s legal rights.
Other Parents
Keep going to support groups. Parents are amazing
resources and will help provide emotional and
practical support. Look into additional groups in
your area if you don’t feel you’ve found the right
one for you.
Sign up for More Training
Using the methods you are learning from your
Week 11 child’s therapists will help create a productive en-
vironment at home, so your child will have the best
chance of obtaining their goals.
Check Your Child’s Progress
Look for progress. Hopefully, your child has been
through a consistent month of therapy at this point.
Review your binder and videos to see if you notice
improvements. Continue to attend sessions too.
Take notes on what you see. Keep a copy in your
binder and bring them to your next team meeting.
Week 13
Dig deeper into Treatment
Options
Hold a Team Meeting
Set aside time to do some research and reading on Check on progress again. You should continue to
additional treatments and therapies. Make notes see progress after at least six weeks of consistent
and copy useful information to include in your therapy. If there has been little or no progress, call
binder.
another team meeting to brainstorm and make
adjustments to your child’s routine.
Continue Learning
Keep learning about autism. Books, seminars, movies,
Web sites—all sorts of sources can help you deepen
your understanding of autism and your child. See
the Suggested Reading List in this kit for ideas.
Do Something for You
Week 12
Enjoy some “me” time. Do something nice for your-
self—you’ve made it through 100 days!
Reconnect with Your Spouse
Take some one-on-one time to enjoy each other’s
company. If communication has been difficult,
consider scheduling time with a counselor to keep
your relationship healthy.
Ideas for Purposeful Play
From the University of Washington Autism Center Parent Care Book
Imitation: Object and Motor
• Sing finger play songs such as the Itsy Bitsy Spider, 5 Little Monkeys, Zoom down the Freeway
• Utilize musical instruments: “Let’s make music”, play Simon Says, have a musical parade,
slow down, speed up, “Follow Me Song”
• Figurines: know on barn door, follow the leader to the schoolhouse
• Block play: make identical block structures
• Painting and drawing similar pictures, strokes, circles, lines, dot art
• Dramatic play: feeding babies, pouring tea, driving cars or trains on tracks, hammering nails,
stirring
Receptive and Expressive Labeling
Embed labeling into activities such as:
• House (cup, spoon, plate, door)
• Grocery store (orange, apple, banana)
• Dolls (body parts, brush, clothing)
• Barn (animals, tractor)
• Art: Colors, scissors, glue, markers, big crayons, little crayons
• Books: pointing and labeling objects, letters, numbers, shapes, etc.
• Sensory Table: put different colors of animals, shapes, sizes, common objects
• Park/Playground: slide, swing, ball
• Play Dough: use different colored play dough, animal shaped cookie cutters
Receptive Instructions
• Songs: “Simon Says” clap hands, tap legs, etc.
• Clean up time: put in garbage, put on shelf
• During activities request items, “Give me ___”
• Ask child to get their coat/backpack on the way outside or at the end of the day
Matching
• Lotto matching game
• Puzzles with pictures underneath
• Picture to object matching can be done as activity during play (have the child match the
picture of a cow while playing with the barn)
Requesting
• Utilize motivating items (i.e. bubbles, juice, trains) to address requesting/communication
• Swing: wait to push until child makes the request
• Door: wait to open until child makes a request
• Lunch/Snack withhold until child makes request
• Art: child can request glitter, glue, stickers, paint, etc.
Are You Prepar A
ed
for an Autism utism S
How can I Emergency?
keep my child A leading cause of concern
for parents with a child with autism
is children who run or wander away. In a recent online
survey conducted by NAA, an incredible 92% of the af
Safe?
parents who responded reported their children were
at risk of wandering. This is a problem that must et
Autism presents a unique set be addressed in every city and town across America.
Please review the following information and contact y Kit
of safety concerns for parents. The advocacy
and awareness groups, Unlocking Autism (UA) and the your local first responders to get a plan in place for
National Autism Association (NAA), have teamed up to your child and others who may be at risk in your
provide the following safety information for parents. Not community.
all suggestions listed below are right for every family in
Wandering can occur anywhere at anytime.
every neighborhood. You should carefully consider the The first time is often the worst time. Another
best safety options for your individual child.
{
concern is preparation in the event that you become
incapacitated or injured while caring for a person
with autism at home or in the community. If you are
“We had no idea Louis
concerned that your child may wander, now is the time
was out of the house, when
to get to know your local law enforcement, fire and
we received a call from a
ambulance agencies. Ask your local 911 call center to
neighbor. Thankfully, they
“red flag” this information in their 911 computer data
were familiar with Lou and } base. Should you need help in the future, dispatchers
can alert patrol officers about your concerns before
knew how to reach us.”
they arrive. By providing law enforcement with key
information before an incident occurs, you can expect
better responses.
{ Make sure any alterations
you make to your home not
delay or prevent fire, police,
ambulance or rescue personnel
from getting to her or him }
immediately in an emergency.
An ounce of
prevention…
You know the expression, Create an
“an ounce of prevention is worth a
pound of cure.” Following are some tools and ideas informational
to help you plan for and prevent emergencies.
Survey and secure your home
handout about
Are there changes you can make to help ensure
your child’s safety? If wandering is an issue for your
family, consider contacting a professional locksmith, your child.
security company or home improvement professional
to prepare your home. You may find it is necessary to Having a description of
prevent your child from slipping away unnoticed by:
• Installing secure dead bolt locks that require
and information about your child could be an
keys on both sides.
incredibly valuable tool in ensuring his or her safety.
• Installing a home security alarm system.
It should be copied and carried with you at all times,
• Installing inexpensive battery-operated alarms
at home, in your car, purse or wallet. Include a photo
on doors and windows to alert you when they
of your child and any important information. Be sure
are opened. These are available at stores like
to include your name, address and phone number.
WalMart and Radio Shack.
Circulate this handout to family members, trusted
• Placing hook and eye locks on all doors, above
neighbors, friends and co-workers. The handout
your child’s reach.
will also come in handy if you are in an area other
• Fencing your yard.
than your neighborhood and need the help of or
are approached by the police. This is one item it is
important to have before you actually need it.
Alert your
neighbors
The behaviors and characteristics
of a child with autism have the potential to attract
attention from the public. Law enforcement
professionals suggest that you reach out and get to
know your neighbors.
Decide what information to present to neighbors:
• Does your child have a fear of cars and animals
or is he drawn to them?
• Is your child a wanderer or runner?
• Does he respond to his name or would a
stranger think he is deaf?
Plan a brief visit to your neighbors:
• Introduce your child or provide a photograph.
Consider a personal
• If a neighbor spots your child outside of your
yard, what is the best way for them to get your
trac
Some king de
use a small unit vice
that is .
child back to you?
put in a child’s pocket
• Are there sensory issues your neighbors
or backpack and work with your computer or mobile
should know about?
phone so that you can monitor your child’s location.
Others involve a handheld unit for the parent which
Give your neighbor a simple handout with your name, tracks the location of the child’s wristband. Some
address, and phone number. Ask them to call you units work with local law enforcement and rescue
immediately if they see your child outside the home. personnel. The tracking distance for the devices
This approach may be a good way to avoid problems varies considerably and ranges from 300 feet for
down the road and will let your neighbors:
parent monitored units to one mile on the ground
• Know the reason for unusual behaviors
and 5-7 miles from the air for those monitored by
• Know that you are approachable
rescue personnel. Some systems include waterproof
• Have the opportunity to call you before
tracking devices. Prices range from around $200 for
they call 911
some parent monitoring units to around $7,000 for
Knowing your neighbors and making them units tied into local rescue personnel. Many local
comfortable with your child’s differences can lead to law enforcement agencies have purchased units
better social interactions for your child.
for tracking residents with autism, Alzheimer’s and
Down’s Syndrome.
Teach your child
to swim.
Too
autism arof
e often,
ten a
ttr c
ac hildr
ted to wa en
ter
with
sources such
as pools, ponds, and lakes. Drowning is a leading
cause of death for a child or adult who has Autism.
Be sure your child knows how to swim unassisted.
Swimming lessons for children with special needs
are available at many YMCA locations. The final
lesson should be with clothes on.
Consider a Medical ID
Br
You acelet f
may want to or y
pur
our c
chase an ID Brhild.
acelet for your
child, especially if your child is non-verbal. Include
your name and telephone number. State that your
child has autism and is non-verbal if applicable.
If your child will not wear a bracelet or necklace,
consider a temporary tattoo with your contact
information.
Child with Autism
Emergency Information
Child may:
Sean likes to climb and may often be found playing on
climbing equipment at playgrounds or climbing trees or
fences. Sean flaps his arms up and down and rocks from
sample
foot to foot when he is excited or afraid.
Favorite places:
South Marlboro Elementary School Playground
Marlboro Haven Mall – Water Fountain
Photo taken: 11/1/2007
Sean O’Donnell
May be frightened by:
Sean is very afraid of dogs and may hide to avoid them
or scream and run away. He is very sensitive to loud
Physical Description
noises.
Date of Birth: 6/21/2002
Best way to communicate:
Sean has a limited vocabulary but can understand “Let’s
Height:
3’ 6”
go see Mom” or “Let’s go home.” He will respond if
asked his name. He can give yes or no answers but may
Weight:
54 lbs.
answer yes or no without understanding the question.
Eye Color:
brown
Identification:
Sean wears a MED ID bracelet for EPILEPSY
Hair Color:
brown
sample
Scars:
Contact Immediately:
small scar above right eyebrow
Name
Peggy O’Donnell
Identifying Marks: birthmark on left shoulder blade
Home phone
508-555-7238
Mobile phone
508-550-7239
Responds to:
Relationship
Mother
Sean loves SpongeBob Square Pants. He may be carrying Name
Robert O’Donnell
a stuffed Sponge Bob toy. He loves to hear about Sponge Home Phone
508-555-7238
Bob and the Sponge Bob song. He will answer yes or no Mobile phone
508-550-7240
questions about Sponge Bob characters like Squidward and Relationship
Father
Patrick from the Sponge Bob Show
Home Address:
463 Canterbury Way
Please be aware that:
South Marlboro, MA
Sean currently takes medication for seizures. Check MED
01000
sample
ID bracelet. He does not like to have his head touched. He
will tolerate being taken by the hand.
PLEASE REFER TO ATTACHED MAP FOR
LOCATION OF PLAYGROUNDS AND HOME.
Comparing Treatment Methods & Providers
Adapted from: Does My Child Have Autism? By Wendy L. Stone, Ph.D. with Theresa Foy DiGeronimo
Co
PROGRAM
Name of Program/Provider
mpar
Method
Location
Phone Number
Email
Website
ing
Hours per Week
Cost
T
Reimbursement
r
Recommended by
eatment Methods
PROGRAM CONTENT
Areas of development
focused on:
(language,
communication,
toy
play, imitation, peer play, social
interactions, behavior, pre-academic
skills, work skills, parent training)
How specific goals are identified
for each child:
How behaviors and skills are
prioritized:
What kind of teaching is used:
How behaviors are managed:
MEASURING PROGRESS
How will I know if my child is
making progress?
How long will it be before I see
changes?
What types of improvements
should I expect?
How often will you assess
progress & how is it measured?
What will happen if my child
doesn’t make progress with this
treatment?
THERAPIST QUALIFICATIONS
How many children with Autism
have you worked with?
What ages?
Do you serve children over three
years old?
What are your qualifications?
What type of training do you
have?
Do you have a professional
degree or certificate
(Ask for details)
Are you affiliated with a
professional organization?
(Ask for details)
What do you see as your
strongest skills in working with
children with Autism?
Are there issues or problems you
consider to be outside of your
realm of expertise?
SCIENTIFIC EVIDENCE OF EFFECTIVENESS
Is there research to support the
effectiveness of this type of
treatment?
(Ask for details as well as copies
of published articles)
Has research shown this
treatment to be better than
other types of treatment?
PROFESSIONAL INVOLVEMENT
Who will be providing the direct
intervention with my child?
What type of training do they
have?
Who will be supervising them
and how?
How often will you see my child
personally?
PARENT INVOLVEMENT
Will I be able to participate in the
treatment?
Will you teach me to work with
my child? How?
What skills will you teach me?
(Ask for examples)
COMPATIBLITY WITH OTHER TREATMENTS
How many hours per week of
your treatment will my child
need?
Is your treatment compatible
with other interventions my
child is participating in?
How do you collaborate with
other therapy providers on my
child’s team?
(get examples)
Service Provider Planner
Requested #
Agency & Contact
Phone #
Date
Called
Requested Services
of Sessions &
Availability
Status
Follow-Up
Other Info
Duration
Kid’s Agency
Jane Smith - 2
Will call me back
Mary Jones
555-555-555 1/7/08
Speech
4 sessions - 30
min each
sessions
can start 1/15/08
Can Start 2/1/08
Jane’s #555-2222
email: jane@speechteherpay.com
Requested #
Agency & Contact
Phone #
Date
Called
Requested Services
of Sessions &
Availability
Status
Follow-Up
Other Info
Duration
Kid’s Agency
Jane Smith - 2
Will call me back
Mary Jones
555-555-555
1/7/08
Speech
4 sessions - 30
min each
sessions
can start 1/15/08
Can Start 2/1/08
Jane’s #555-2222
email: jane@speechtherapy.com
CONTACTS - Medical
Co
Specialty
Neurology
Specialty
Name of Contact
Dr. Sample Doctor
Name of Contact
nta
Name of Practice
Children’s Hospital
Name of Practice
Phone Number
(508)555-1000
Phone Number
cts
2000 Summit Drive
Address
Anytown, MA 01000
Address
Email Address/
Email Address/
Website
Sample.doctor@childrens.edu
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
CONTACTS - Therapy
Specialty
Neurology
Specialty
Name of Contact
Dr. Sample Doctor
Name of Contact
Name of Practice
Children’s Hospital
Name of Practice
Phone Number
(508)555-1000
Phone Number
2000 Summit Drive
Address
Anytown, MA 01000
Address
Email Address/
Email Address/
Website
Sample.doctor@childrens.edu
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
CONTACTS - Support
Specialty
Neurology
Specialty
Name of Contact
Dr. Sample Doctor
Name of Contact
Name of Practice
Children’s Hospital
Name of Practice
Phone Number
(508)555-1000
Phone Number
2000 Summit Drive
Address
Anytown, MA 01000
Address
Email Address/
Email Address/
Website
Sample.doctor@childrens.edu
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
CONTACTS - Other
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
Specialty
Specialty
Name of Contact
Name of Contact
Name of Practice
Name of Practice
Phone Number
Phone Number
Address
Address
Email Address/
Email Address/
Website
Website
Phone Log
P
Name of Contact
ho
Phone Number
Date/Time
ne L
Summary of Call
og
Follow up Required
Date/Time
Summary of Call
Follow up Required
Date/Time
Summary of Call
Follow up Required
Date/Time
Summary of Call
Follow up Required
Date/Time
Summary of Call
Follow up Required
Phone Log
Name of Contact
Phone Number
Date/Time
Summary of Call
Follow up Required
Date/Time
Summary of Call
Follow up Required
Date/Time
Summary of Call
Follow up Required
Date/Time
Summary of Call
Follow up Required
Date/Time
Summary of Call
Follow up Required
Assessment Tracking
Type of Therapy:
Change in
Date
Test Administered
Evaluator
Standard Score
Age Equivalent
Standard
Change in Age
Score
Equivalent
Oral & Written Language Scales
Ms. Smith
1/12/07 (Subtest) Oral Expression
49
3.4
(Subtest) Listening Comprehension
48
3.5
Oral & Written Language Scales
Ms. Jones
2/8/08 (Subtest) Oral Expression
50
3.8
1
4 months
(Subtest) Listening Comprehension
57
4.1
9
8 months
Team Meeting/Review
10
2
1
Type of Therapy:
Change in
Date
Test Administered
Evaluator
Standard Score
Age Equivalent
Standard
Change in Age
Score
Equivalent
IFSP / IEP Goals
Goal
Goals
Date
Comments
Goals
Goals Just
Goals Not
Mastered
Making
Progress
Started
Started
Sept. 06 Started Program
0
0
10
6
T
Nov. 06 Team Meeting/Review
2
10
3
3
r
a
Jan. 06 Team Meeting/Review
4
10
2
1
c
king
Goals
Date
Comments
Goals
Goals Just Goals Not
Mastered
Making
Progress
Started
Started
Glossary
Asperger’s Disorder, PDD – Not Otherwise Specified,
Childhood Disintegrative Disorder, and Retts Disorder.
B
Glossar
Visit the Autism Speaks Video Glossary at
www.AutismSpeaks.org to see video of the items in blue.
A
C
Casein is protein found in milk, used in forming the basis of
Absence Seizure, see Seizures
cheese and as a food additive.
Americans with Disabilities Act (ADA) is the US law Celiac Disease is a disease in which there is an immuno-
that ensures rights of persons with disabilities with logical reaction within the inner lining of the small intestine y
regard to employment and other issues.
to gluten, causing inflammation that destroys the lining and
reduces the absorption of dietary nutrients. It can lead to
Angelman Syndrome is a genetic disorder causing symptoms of nutritional, vitamin and mineral deficiencies.
developmental delay and neurological problems,
often accompanied by seizures. Children often Cerebral Palsy (CP) is an abnormality of motor function (as
display hyperactivity, small head size, sleep disorders opposed to mental function) that is acquired at an early
and movement and balance disorders.
age, usually in utero or at less than a year of age, and is due
to a brain lesion that is non-progressive.
Anticonvulsant is a type of drug used to prevent or
stop seizures or convulsions. Also called antiepileptic. Childhood Disintegrative Disorder is a disorder in which
development begins normally in all areas, physical and
Aphasia is the complete or partial loss of ability to use mental. At some point between 2 and 10 years of age, the
or understand language.
child loses previously developed skills. The child may lose
social and language skills and other functions, including
Apraxia is a disorder consisting of partial or total bowel and bladder control.
incapacity to execute purposeful movements, without
impairment of muscular power and coordination. The Chromosome15 Duplication Syndrome is a rare chromosomal
person has difficulty sequencing movements. Apraxia disorder. Symptoms may be similar to Prader-Willi and
may be specific to speech.
Angelman syndromes and range from asymptomatic
cases to variable combinations of skeletal, neurological,
Applied Behavior Analysis (ABA) is a style of teaching gastrointestinal, psychological, and other abnormalities in
using series of trials to shape desired behavior or association with developmental delay.
response. Skills are broken into small components and
taught to child through a system of reinforcement.
Chronic Constipation is an ongoing condition of having
fewer than three bowel movements per week.
Asperger Syndrome is a developmental disorder
on the Autism spectrum defined by impairments Clinical Features are directly observed during examination;
in communication and social development and by based on or characterized by observable and diagnosable
repetitive interests and behaviors, without a significant symptoms of disease.
delay in language and cognitive development.
Cognition is mental process of knowing, including aspects
Astatic Seizure, see Seizures
such as awareness, perception, reasoning and judgment.
Atonic Seizure, see Seizures
Cognitive Skills are any mental skills that are used in
the process of acquiring knowledge; these skills include
Audiologist is a professional who diagnoses and treats, reasoning, perception and judgment.
individuals with hearing loss or balance problems.
Colitis is inflammation of the large intestine .
Autism Diagnostic Observation Schedule (ADOS) is test
considered to be current gold standard for diagnosing Complete Blood Count (CBC) lab test reporting number of
ASD and, along with information from parents, should white blood cells, red blood cells, platelets, hemoglobin,
be incorporated into a child’s evaluation.
hematocrit & other values reflecting overall blood health.
Autism Spectrum Disorders encompasses the Compulsions are deliberate repetitive behaviors that follow
following disorders listed in DSM-IV: Autistic Disorder, specific rules, such as pertaining to cleaning, checking, or
counting. In young children, restricted patterns of either immediately after hearing word or phrase, or
interest may be early sign of compulsions.
much later. Delayed echolalia occurs days or weeks
later. Functional echolalia is using quoted phrase in
Computed Axial Tomography (CT) examines organs by a way that has shared meaning, for example, saying
scanning with X rays and using computer to construct “carry you” to ask to be carried.
series of cross-sectional scans. Called “CAT” scan.
Electroencephalogram (EEG) a test using electrodes on
Cytomegalovirus (CMV) common virus of herpes family. scalp to record electrical brain activity. For diagnoses
May be asymptomatic in healthy people. May be serious of seizure disorder or abnormal brain wave patterns.
in patient with impaired immune system. Infection in
utero may cause serious developmental disorders.
Epilepsy (Seizure disorder) is pattern of repeated
D
seizures, causes include head injury, brain tumor,
lead poisoning, genetic & infectious illnesses. Cause
Declarative Language is used to communicate what is unknown in 50% of cases.
the mind is producing. It is what is most common in
conversation, whereas Imperative Language is used to Esophagitis is inflammation of the esophagus,
ask questions, make commands or give instructions.
the soft tube-like portion of the digestive tract
connecting the pharynx with the stomach.
Developmental Disorder refers to several disorders that
affect normal development. May affect single area Expressive Labeling is the communication of a name
of development (specific developmental disorders) or for an object or person, see expressive language.
several (pervasive developmental disorders).
Expressive Language is communication of intentions,
Developmental Individual Difference Relationship (DIR) desires, or ideas to others, through speech or printed
is therapy, known as Floortime, that seeks to move the words. Includes gestures, signing, communication
child toward increasingly complex interactions through board and other forms of expression.
mutually shared engagement.
Extended School Year (ESY) Services are provided
Developmental Milestones skills or behaviors that during lbreaks from school, such as during summer
most children can do by a certain age that enable the vacation, for students who experience substantial
monitoring of learning, behavior, and development.
regression in skills during school vacations.
Developmental Pediatrician is a medical doctor who F
is board-accredited and has received sub-specialty Free Appropriate Public Education (FAPE) means that
training in developmental-behavioral pediatrics.
education must be provided to all children ages three
to twenty-one at public expense.
Diagnostic and Statistical Manual the official system for
classification of psychological and psychiatric disorders Floortime a developmental intervention for children
published by the American Psychiatric Association.
with autism involving meeting a child at his current
developmental level, and building upon a particular
Discrete Trial Teaching (DTT), is technique incorporating set of strengths.
principles of ABA, including positive reinforcement. Not
in itself ABA. Used to teach behaviors in one-to-one Fragile X is a genetic disorder that shares many of
setting. Concepts are broken down into small parts.
the characteristics of autism. Individuals may be
tested for Fragile X.
Dyspraxia is brain’s inability to plan muscle movements
and carry them out. In Speech, this term may be used G
to describe Apraxia.
Gastritis is inflammation of the stomach.
E
Gastroenterologist doctor specializing in diagnosis
Early Intervention (EI) is a state-funded program & treatment of disorders of Gl tract, including
designed to identify and treat developmental problems esophagus, stomach, small intestine, large intestine,
or other disabilities as early as possible. Eligibility for EI pancreas, liver, gallbladder & biliary system.
is from birth to three years of age.
Gastroesophageal Reflux return of stomach contents
Echolalia is repeating words or phrases heard previously, back up into the esophagus which frequently causes
heartburn due to irritation of the esophagus by in all areas; family’s resources, priorities, & concerns,
stomach acid.
services to be received and the frequency, intensity,
and method of delivery. Must state natural
Gastrointestinal pertains to the digestive tract, environments in which services will occur.
including the mouth, throat, esophagus, stomach,
small intestine, large intestine, and rectum.
Individualized Education Plan (IEP) identifies
student’s specific learning expectations, how school
General Education is a pattern of courses in multiple will address them with appropriate services, and
subjects taught to the same grade level to deliver a methods to review progress. For students 14 & older,
well-balanced education.
must contain plan to transition to postsecondary
education or the workplace, or to help the student
Geneticist refers to a medical doctor who specializes live as independently as possible in the community.
in genetic problems. Genes are the unit in the
chromosome that contain the blueprint for the Individuals with Disabilities Education Act (IDEA) is the
transmission of inherited characteristics.
US law mandating the “Free and Public Education” of
all persons with disabilities between ages 3 and 21.
Gestures are hand and head movements, used to signal
to someone else, such as a give, reach, wave, point, Infectious agents are organisms that cause infection;
or head shake. They convey information or express can be viruses, bacteria, fungi, or parasites.
emotions without the use of words.
Inclusion involves educating all children in regular
Global Developmental Delay is diagnosis in children classrooms, regardless of degree or severity of
younger than 5, characterized by delay in two or more disability. Effective inclusion takes place with
developmental domains, sometimes associated with planned system of training and supports; involves
mental retardation.
collaboration of multidisciplinary team including
regular and special educators.
Gluten is a protein present in wheat, rye, and barley.
J
Grand mal Seizure, see Seizures
H
Joint Attention is the process of sharing one’s
experience of observing an object or event, by
Hyperlexia is the ability to read at an early age. To be following gaze or pointing gestures. Critical for
hyperlexic, a child does not need to understand what social development, language acquisition, cognitive
he or she is reading.
development. Impairment in joint attention is a core
deficit of ASD.
Hyperresponsiveness, Hypersensitivity, see Sensory K
Defensiveness
Hyposensitivity, Hyporesponsiveness, is abnormal L
insensitivity to sensory input. Child who appears to be Least Restrictive Environment (LRE) is setting that least
deaf, whose hearing is normal, is under reactive. Child restricts opportunities for child with disabilities to be
who is under reactive to sensory input may have a high with peers without disabilities. The law mandates
tolerance to pain, may be clumsy, sensation-seeking, that every child with a disability be educated in a
and may act aggressively.
Least Restrictive Environment.
Hypotonia is a term that means low muscle tone.
M
I
Magnetic Resonance Imaging (MRI) is a diagnostic
technique using powerful electromagnets, radio
Incidental Teaching teaches a child new skills while in frequency waves, and a computer to produce well-
their home or community, in natural context or “in the defined images of the body’s internal structures.
moment,” to help make sense of what they learn dur-
ing formal instruction and generalize new skills.
Mainstreaming is where students are expected to
participate in existing regular ed classes, whereas
Individual Family Service Plan (IFSP) is developed by a in an inclusive program classes are designed for
multidisciplinary team including family as primary all students. May be gradual, partial, or part-time
participant. Describes child’s level of developmentl process (e.g., student may attend separate classes
within regular school, or participate in regular gym efforts to breathe continue. Throat collapses during
and lunch only).
sleep causing snorting and gasping for breath. May
cause daytime sleepiness. May increase risk of
Maternal Rubella is a mild, highly contagious virus, hypertension and heart problems.
also known as “German measles” that crosses the
placenta from infected mothers and leads to major Occupational Therapy assists development of fine
developmental defects in developing fetus.
motor skills that aid in daily living. May focus on
sensory issues, coordination of movement, balance,
Melatonin is a hormone produced by pineal gland, and self-help skills such as dressing, eating with a fork,
involved in regulating sleeping and waking cycles. grooming, etc. May address visual perception and
Sometimes used for chronic insomnia. Consult your hand-eye coordination.
child’s physician before giving melatonin; it is not
recommended for all patients with sleep problems.
Occupational Therapist helps minimize impact of
disability on independence in daily living by adapting
Mental Retardation describes person with limitations child’s environment and teaching sub-skills of the
in mental functioning that cause them to develop missing developmental components.
more slowly than typical child. They may take longer
to learn to speak, walk, and take care of personal Operant Conditioning is the modification of behavior
needs such as dressing or eating, and are likely to have through positive and/or negative reinforcement.
trouble learning in school. May be mild or severe.
P
Modified Checklist of Autism in Toddlers (MCHAT) is Perseveration is repetitive movement or speech, or
a screening tool for identifying young children who sticking to one idea or task, that has a compulsive
may be referred to specialist for further evaluation quality to it.
and possible Autism Spectrum Disorder diagnosis.
Pervasive Developmental Disorders (PDD) group of
Motor deficits are physical skills that a person cannot conditions involving delays in development of many
perform or has difficulty performing.
basic skills, including ability to socialize with others, to
Motor function (or Motor Skills) is the ability to move communicate and use imagination. Includes Autism,
and control movements.
Asperger Syndrome, Childhood Disintegrative Disorder,
Rett Syndrome and Pervasive Development Disorder -
N
Not Otherwise Specified.
Neurocutaneous Disorders are genetic disorders Pervasive Developmental Disorder – Not Otherwise
leading to abnormal growth of tumors. Usually Specified (PDD-NOS) a category of PDD referring
first appearing as skin lesions like birthmarks; may to children having significant problems with
eventually lead to tumors affecting central nervous communication & play, and some difficulty interacting
system and other parts of the body.
with others, but are too social for diagnosis of autism.
Neurologist refers to a doctor specializing in medical Petit Mal Seizure, see Seizures
problems associated with the nervous system,
specifically the brain and spinal cord.
Phenylketonuria (PKU) a metabolic disorder involving
deficiency of enzyme phenylalanine hydroxylase
Nonverbal Behaviors are things people do to convey which leads to harmful buildup of phenylaline in body.
information or express emotions without words, Symptoms range from mild to severe. May cause
including eye gaze, facial expressions, body postures, mental retardation.
and gestures.
O
Physical Therapy uses specially designed exercises and
equipment to help patients regain or improve their
Obsessions are persistent and intrusive repetitive physical abilities.
thoughts. Preoccupations with specific kinds of ob-
jects or actions may be an early sign of obsessions.
Physical Therapists design and implement physical
therapy programs and may work within a hospital or
Obstructive Sleep Apnea breathing disorder clinic, in a school, or as an independent practitioner.
interrupting breathing during sleep when air flow
cannot flow through the nose or mouth although Pica is persistent eating or mouthing of non nutritive
substances for at least 1 month when behavior is begins to understand words and responds to his
developmentally inappropriate (older than 18-24 name and may respond to familiar words in context.
months). Substances may includeitems such as clay, By 18 to 20 months a child identifies familiar people
dirt, sand, stones, pebbles, hair, feces, lead, laundry by looking when named (e.g., Where’s mommy?),
starch, vinyl gloves, plastic, erasers, ice, fingernails, gives familiar objects when named (e.g., Where’s the
paper, paint chips, coal, chalk, wood, plaster, light ball?), and points to a few body parts (e.g., Where’s
bulbs, needles, string, cigarette butts, wire, and burnt your nose?). These skills commonly emerge slightly
matches.
ahead of expressive language skills.
Picture Exchange Communication System (PECS) an Reinforcement, or reinforcer, is any object or event
alternative communication system using picture following a response, increasing or maintaining
symbols. Taught in phases starting with simple the rate of responding. Positive reinforcer may be
exchange of symbol for desired item. Individuals learn produced by, or be added after a response.
to use picture symbols to construct complete sentences,
initiate communication, & answer questions.
Relationship Development Intervention (RDI) a
therapeutic teaching method based on building
Pivotal Response Treatment (PRT) therapeutic teaching intelligence competencies of social connection --
method using incidental teaching opportunities such as referencing, emotion sharing, coregulation,
to target and modify key behaviors related to and experience sharing -- that normally develop in
communication, behavior, and social skills.
infancy and early childhood.
Prevalence is the current number of people in a given Respite Care is temporary, short-term care provided
population who have a specific diagnosis at a specified to individuals with disabilities, delivered in the home
point in time.
for a few short hours or in an alternate licensed
setting for an extended period of time. Respite care
Proprioception is the receiving of stimuli originating in allows caregivers to take a break in order to relieve
muscles, tendons and other internal tissues.
and prevent stress and fatigue.
Prosody is the rhythm and melody of spoken language Rett Syndrome is a very rare disorder in which
expressed through rate, pitch, stress, inflection, or patient has symptoms associated with PDD along
intonation. Some children with ASD have unusual with problems with physical development. They
intonation (flat, monotonous, stiff, or “sing songy” generally lose many motor, or movement, skills –
without emphasis on the important words).
such as walking and use of hands – and develop poor
coordination. Condition has been linked to defect on
Psychiatrist is a doctor specializing in prevention, the X chromosome, so it almost always affects girls.
diagnosis & treatment of mental illness. Has received
additional training & completed a supervised residency S
in specialty. May have additional training in specialty,
such as child psychiatry or neuropsychiatry. Can Seizure refers to uncontrolled electrical activity in
prescribe medication, which psychologists cannot do.
the brain, which may produce a physical convulsion,
minor physical signs, thought disturbances, or a
Psychologist is a professional who diagnoses and combination of symptoms.
treats diseases of the brain, emotional disturbance,
and behavior problems. May have a master’s degree Seizure, Absence, takes form of staring spell. Person
(M.A.) or doctorate (Ph.D.) in psychology. May have suddenly seems “absent.” Has brief loss of awareness.
other qualifications, including Board Certification and May be accompanied by blinking or mouth twitching.
additional training in a specific type of therapy.
Absence seizures have very characteristic appearance
on EEG. Also called a petit mal seizure.
Q
Seizure, Atonic, seizure where person loses muscle
R
tone & strength &, unless supported, falls down.
Atonic means lack of muscle tone & strength.
Receptive Labeling, see receptive language
Seizure, Subclinical (Electrographic Seizures), are sei-
Receptive Language the ability to comprehend words zures that are visible on the EEG, but the patient does
and sentences. Begins as early as birth and increases not exhibit clinical symptoms. Electroencephalogra-
with each stage in development. By 12 months a child phy often detects subclinical seizures during sleep.
Seizure, Tonic-clonic, Seizures involving two phases – ample, a social story might be written about birthday
tonic phase when body becomes rigid, & clonic phase parties if the child appears to have a difficult time
of uncontrolled jerking. May be preceded by aura & understanding what is expected of him or how he is
are often followed by headache, confusion, & sleep. supposed to behave at a birthday party.
May last for seconds, or continue for several minutes. Social Worker is a trained specialist in the social,
Self Regulation and self-control are related but not the emotional & financial needs of families & patients.
same. Self-regulation refers to both conscious and Social workers often help families & patients obtain
unconscious processes that have an impact on self- the services they have been prescribed.
control, but regulatory activities take place more or less
constantly to allow us to participate in society, work, & Special Education is specially designed instruction,
family life. Self-control is a conscious activity.
at no cost to families, to meet unique needs of child
with disability, including instruction conducted in the
Sensory Defensiveness is a tendency, outside the norm, classroom, in the home, in hospitals & institutions, &
to react negatively or with alarm to sensory input in other settings & instruction in physical education.
which is generally considered harmless or non-irritat-
ing to others. Also called hypersensitivity.
Speech & Language Therapist, or Speech Language
Pathologist, specializes in human communication.
Sensory Input, see sensory stimuli
The focus is on communication, not speech, to
increase child’s ability to impact and understand their
Sensory Integration is the way the brain processes environment.
sensory stimulation or sensation from the body &
then translates that information into specific, planned, Speech & Language Therapy is provided with the goal
coordinated motor activity.
of improving an individual’s ability to communicate.
This includes verbal and nonverbal communication.
Sensory Integration Dysfunction a neurological disorder The treatment is specific to the individual’s need.
causing difficulties processing information from the
five classic senses (vision, hearing, touch, smell, & taste), Spoken Language (also referred to as expressive
sense of movement (vestibular system), and positional and receptive language) use of verbal behavior, or
sense (proprioception). Sensory information is sensed speech, to communicate thoughts, ideas, & feelings
normally, but perceived abnormally. May be a disorder with others. Involves learning many levels of rules -
on its own, or with other neurological conditions.
combining sounds to make words, using conventional
meanings of words, combining words into sentences,
Sensory Integration Therapy is used to improve ability and using words & sentences in following rules of
to use incoming sensory information appropriately & conversation.
encourage tolerance of a variety of sensory inputs.
Stereotyped Behaviors refer to an abnormal or
Sensory stimulus agent, action or condition, internal excessive repetition of an action carried out in
(e.g., heart rate, temperature) or external (e.g., sights, the same way over time. May include repetitive
sounds, tastes, smells, touch, & balance) that elicits movements or posturing of the body or objects.
physiological or psychological response. Response
depends on ability to regulate & understand stimuli & Stereotyped Patterns of Interest or restricted patterns
adjust emotions to demands of surroundings.
of interest refer to a pattern of preoccupation with a
narrow range of interests and activities.
Sleep Hygiene a set of practices, habits & environmental
factors critically important for sound sleep, such as Stim, or “self-stimulation” behaviors that stimulate
minimizing noise, light & temperature extremes & ones senses. Some “stims” may serve a regulatory
avoiding naps & caffeine.
function (calming, increasing concentration, or
shutting out an overwhelming sound).
Social Reciprocity back-and-forth flow of social
interaction. How behavior of one person influences & Subclinical Seizure, see Seizures
is influenced by behavior of another & vice versa.
Symbolic Play is where children pretend to do things &
Social Stories, developed by Carol Gray, are simple sto- to be something or someone else. Typically develops
ries that describe social events & situations that are between the ages of 2 & 3 years. Also called make
difficult for a child with a PDD to understand. For ex- believe, or pretend play.
Syndrome is a set of signs & symptoms that collectively X
define or characterize a disease, disorder or condition.
T
Y
Tactile Defensiveness is a strong negative response to a Z
sensation that would not ordinarily be upsetting, such
as touching something sticky or gooey or the feeling of
www.AutismSpeaks.org
soft foods in the mouth. Specific to touch.
Thalidomide is a sedative & hypnotic drug that has
been the cause of malformation of infants born to
mothers using it during pregnancy. Thalidomide acts
as an angiogenesis inhibitor & can inhibit bone forma-
tion. Currently used to treat certain types of cancer.
Training and Education of Autistic and Related
Communication Handicapped Children (TEACCH) is
a therapeutic approach broadly based on the idea
that individuals with autism more effectively use &
understand visual cues.
Tonic-clonic seizure, see Seizures
Tuberous Sclerosis is a neurocutaneous disorder
characterized by mental retardation, seizures, skin
lesions & intracranial lesions. An autosomal dominant
disorder that occurs in 1 in 7,000 births.
Typical Development (or healthy development)
describes physical, mental, & social development of
a child who is acquiring or achieving skills according
to expected time frame. Child developing in a healthy
way pays attention to voices, faces, & actions of others,
showing & sharing pleasure during interactions,
& engaging in verbal & nonverbal back-and-forth
communication.
U
V
Valproate, or Valproic Acid, is an antiepileptic drug
used to treat epilepsy, migraines & bipolar disorder.
Given orally or by injection. Associated with high rate
of serious adverse events, including major congenital
abnormalities & fetal death with in utero exposure.
Verbal Behavior is a method of Applied Behavioral
Analysis (ABA) for teaching children with autism,
based on B.F. Skinner’s description of the system of
language.
Vestibular System refers to the body’s system for
maintaining equilibrium.
W
The pages that follow contain
information from the Autism Speaks
Family Services Resource Guide.
We have provided information on resources and services in your area
that may be helpful to you and your family.
The Family Services Resource Guide can be found on the Autism Speaks website,
www.AutismSpeaks.org/community/fsdb/index.php.
Autism Speaks maintains the Family Services Resource Guide as a service to families as a reference tool.
Every effort is made to ensure listings are up-to-date. Autism Speaks does not endorse or claim to have
personal knowledge of the abilities of those listed. The resources listed in these pages are not intended
as a recommendation, referral, or endorsement of any resource or as a tool for verifying the credentials,
qualifications, or abilities of any organization, product or professional. Users are urged to use independent
judgment and request references when considering any resource associated with diagnosis or treatment of
autism, or the provision of services related to autism.
Document Outline
- 03_About.pdf
- 100_day_kit.pdf
- 01_TitlePage.pdf
- 02_Contents.pdf
- 03_About.pdf
- 04_ActionPlan.pdf
- 05_Play.pdf
- 06_SafetyKit.pdf
- 06_CTMP.pdf
- 07_FormSPP.pdf
- 08_Contacts.pdf
- 09_PhoneLog.pdf
- 10_FormTT.pdf
- 11_Goals.pdf
- 12_Glossary.pdf
- 13_ASKitFSRG.pdf
