100 Day Kit

For Newly Diagnosed Families of Young Children

FAMILY SERVICES JULY 2014
 100 DAY KIT

A tool kit to assist families of young children

in getting the critical information they need in the
first 100 days after an autism diagnosis.

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 tool 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. 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.

© 2018 Autism Speaks Inc. Autism Speaks and Autism Speaks Design are registered trademarks owned by Autism Speaks Inc. All rights reserved. The use of unaffiliated representatives
for endorsement, advertising, promotional and sales material is prohibited by law.
 100 DAY KIT

Ab out This Kit 1 0 0 D ay Kit P rofessional Ad v isory C ommittee

The Autism Speaks 1 0 0 Day Kit is a tool designed G erald ine D awson, P h.D .
to help assist families of children recently diagnosed Professor, Department of Psychiatry and Behavioral Sci-
with autism during the critical period following an ences, Duke U niversity Medical Center
autism diagnosis. The kit includes basic information
about autism and its symptoms, tips for dealing with Rob in L . H ansen, M .D .
a child’ s diagnosis, information about therapies and Director, U niversity Center for Excellence in Develop-
treatments, forms to help parents get organized, a mental Disabilities
comprehensive list of resources and more. Director of Clinical Programs
M.I.N.D. Institute/ U .C.Davis
The 1 0 0 Day Kit was released in 2 0 0 8 and a second
version was released in 2 0 1 1 . It was created by the Susan H yman, M .D .
Autism Speaks F amily Serv ices staff in conj unc- U niversity of Rochester School of Medicine and Dentistry
tion with both a professional and parent advisory Strong Center for Developmental Disabilities
committee and the Family Services Committee.
C onnie Kasari, P h.D .
Professor of Psychological Studies in Education
U CLA Graduate School of Education and Information
Acknowled gements
Sciences

Autism Speaks would like to extend special thanks to the

Ami Klin, P h.D .
Parent Advisory Committee for the time and effort that
Y ale U niversity, School of Medicine
they put into reviewing the 1 0 0 Day Kit.
Child Study Center

1 0 0 D ay Kit P arent Ad v isory C ommittee

L ynn Kern Koegel, P h.D .
Clinical Director, Koegel Autism Center
Stacy Crowe
U niversity of California, Santa Barbara
Jill DiGiorgio
Rodney Goodman
Rob ert L . Koegel, P h.D .
Beth Hawes
Professor of Clinical Psychology and Special Education
Deborah Hilibrand
Director, Koegel Autism Center
Dawn Itzkowitz
U niversity of California, Santa Barbara
Lance Jeffreys
Stacy Karger
Raun M elmed , M .D .
Marjorie Madfis
Director, Melmed Center
Donna Ross-Jones
Medical Director, SARRC
Betsy Spalla
Judith U rsitti
Ricki Rob inson, M .D ., M P H
Meredith Weiss
U SC Keck School of Medicine
Marcy Wenning

Sarah J . Spence M .D ., P h.D .

With gratitude, we thank the 1 0 0 Day Kit Professional
Staff Clinician
Advisory Committee for generously donating their time
Pediatrics and Developmental Neuropsychiatry Branch
and experience to this proj ect.
National Institute of Mental Health
 100 DAY KIT

C arole Samango-Sprouse, Ed .D . M el Karmazi n*

Director, Neurodevelopmental Diagnostic Center for Grandparent
Y oung Children, Associate Clinical Professor in the
Department of Pediatrics at George Washington Brian Kelly * * *
U niversity Parent

Wend y Stone, P h.D . Artie Kempner*

Vanderbilt Kennedy Center Parent
Treatment and Research Institute for Autism
Spectrum Disorders G ary S. M ayerson*
Founding Attorney, Mayerson & Associates
L auren Eld er, P hD
Director, Ascent Psychological Services Kev in M urray*
Parent
H eather J ohnson, P syD
Staff Psychologist Division of Developmental and Be- L ind a M eyer, Ed .D
havioral Pediatrics, Cincinnati Children’ s Hospital Executive Director, Autism New Jersey

Ashley M urray, P syM D anny Opend en, P hD , BC BA-D

Cincinnati Children’ s Hospital Medical Center President and CEO, Southwest Autism Research and
Resource Center ( SARRC)
Reb ekah Rid geway P syD
Staff Psychologist, Kelly O’ Leary Center for Autism V alerie P arad iz, P hD
Spectrum Disorders Director, Valerie Paradiz, LLC
Director Autistic Global Initiative
Emily Schreib er, M A. Parent and self-advocate
Cincinnati Children’ s Hospital Medical Center
Stuart Sav itz*
Autism Speaks F amily Serv ices C ommittee Parent

D an Aronson P aul Shattuck, P hD

Parent Leader, AJ Drexel Autism Institute Research Program
Area on Life Course Outcomes
L iz Bell
Parent Stephen Shore, Ed D
Assistant Professor, Special Education, Adelphi
Sallie Bernard * U niversity, Self-advocate
Parent, Executive Director, SafeMinds
M ichelle Smigel
F arah C hapes Parent
Chief Administrative Officer, The Marcus Autism Center
* Autism Speaks board member
* * Chairperson – Family Services Committee
P eter F . G erhard t, Ed .D
Parent – indicates a parent of a child with autism
Former President, Organization for Autism Research
( OAR)
 100 DAY KIT

Autism Speaks thanks the following supporters whose generous contrib utions hav e
helped to fund this 1 0 0 D ay Kit for N ewly D iagnosed F amilies of Y oung C hild ren.

 
 

 
Table of Contents
About Autism
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
How common is Autism? ………………………………………………………………………… 4
What Causes Autism? …………………………………………………………………………… 4
More Information about Symptoms of Autism ………………………………………………… 5
Unique Abilities that May Accompany Autism ………………………………………………… 8
Physical and Medical Issues that May Accompany Autism ………………………………….. 10

You, Your Family and Autism

How will I Deal with this Diagnosis? ……………………………………………………………. 14
Caring for the Caregiver …………………………………………………………………………. 16
What should we know About Our Younger or Future Children? ……………………………. 20
How will this Affect Our Family? ………………………………………………………………… 21
Sharing Your Struggle with Family and Friends ………………………………………………. 22
15 Tips for Your Family ………………………………………………………………………….. 23
Developmental Milestones: Understanding Your Child’s Behavior …………………………. 26

Getting Your Child Services

How Do I Get the Help My Child Needs? ……………………………………………………… 28
29
Accessing Services: Your Child’s Right to Public Education ………………………………..…………..
Early Intervention (EI) Services for Children Under the Age of 3 …………………………… 30
Special Education Services for Children Ages 3-22 ………………………………………….. 31
How Do I Get Services Started for My Child? ………………………………………………… 32
Autism and Insurance …………………………………………………………………………… 33

How is Autism Treated?

Treatment for the Core Symptoms of Autism …………………………………………………. 34
What is Applied Behavior Analysis (ABA)? ……………………………………………………. 35
What is Verbal Behavior? ……………………………………………………………………….. 37
What is Pivotal Response Treatment? …………………………………………………………. 39
What is the Early Start Denver Model (ESDM)? ……………………………………………… 40
What is Floortime (DIR)? ………………………………………………………………………… 41
What is Relationship Development Intervention (RDI)? ……………………………………… 42
What is TEACCH? ……………………………………………………………………………….. 43
What is Social Communication/Emotional Regulation/Transactional Supports (SCERTS) 44
Treatment for Biological and Medical Conditions Associated with Autism ……………........ 45
Is there a Cure? ………………………………………………………………………………….. 48

Making it Happen
How Do I Choose the Right Intervention? …………………………………………………….. 49
Assembling your Team ………………………………………………………………………….. 50
Technology and Autism …………………………………………………………………………. 53
Autism and Wandering …………………………………………………………………………. 53

56
A Week by Week Plan for the Next 100 Days ………………………………………..…………..
Ideas for Purposeful Play …………………………………………………………………...………….. 63
Useful Forms ……………………………………………………………………………………………….. 64
Glossary ………………………………………………………………………………………….………….. 81
Resources ……………………………………………………………………………………….………….. 92
 100 DAY KIT

About Autism
Why Was My Child
Diagnosed with Autism?
And What Does It Mean?
Y our child has been diagnosed with autism spectrum
disorder and you have asked for help. This is an
important turning point in a long j ourney. For some
families, it may be the point when, after a long search
for answers, you now have a name for something
you didn’ t know what to call, but you knew existed.
Perhaps you suspected autism, but held out hope
that an evaluation would prove otherwise. Many fami-
lies report mixed feelings of sadness and relief when
their child is diagnosed. Y ou may feel completely
overwhelmed. Y ou may also feel relieved to know thousands of parents like you to seek answers that
that the concerns you have had for your child are have resulted in a diagnosis of autism. Y ou may
valid. Whatever it is you feel, know that thousands of wonder: W h y does my ch il d need a diag nosis of
parents share this j ourney. Y ou are not alone. There au tism? That’ s a fair q uestion to ask - especially
is reason to hope. There is help. Now that you have when right now, no one is able to offer you a cure.
the diagnosis, the q uestion is, where do you go from Autism Speaks is dedicated to funding global
here? The Autism Speaks 1 0 0 D ay Kit was created biomedical research into the causes, prevention,
to help you make the best possible use of the next treatments and a possible cure for autism. Great
1 0 0 days in the life of your child. It contains informa- strides have been made and the current state of
tion and advice collected from trusted and respected progress is a far cry from the time when parents
experts on autism and parents like you. were given no hope for their children. Some of the
most brilliant minds of our time have turned their
attention toward this disorder.
Why Does My Child Need a It is important to remember that your
Diagnosis of Autism? child is the same unique, lovable,
wonderful person he or she was before
Parents are usually the first to notice the early signs the diagnosis.
of autism. Y ou probably noticed that your child was
developing differently from his or her peers. The There are, however, several reasons why having a
differences may have existed from birth or may have diagnosis is important for your child. A thorough and
become more noticeable later. Sometimes, the differ- detailed diagnosis provides important information
ences are severe and obvious to everyone. In other about your child’ s behavior and development. It can
cases, they are more subtle and are first recognized help create a roadmap for treatment by identifying
by a daycare provider or preschool teacher. Those your child’s specific strengths and challenges and
differences, the symptoms of autism, have led providing useful information about which needs and

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skills should be targeted for effective intervention. A

diagnosis is often required to access autism-specific
services through early intervention programs or your
local school district.

How is Autism Diagnosed?

Presently, we don’ t have a medical test that can
diagnose autism. As the symptoms of autism vary,
so do the routes to obtaining a diagnosis. Y ou may
have raised q uestions with your pediatrician. Some
children are identified as having developmental
delays before obtaining a diagnosis of autism and
may already receive some Early Interv ention or
Special Ed ucation services. U nfortunately, parents’
concerns are sometimes not taken seriously by their
doctor and as a result, 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.

Y our child may have been diagnosed by a d ev elop-

mental ped iatrician, a neurologist, a psychiatrist F or more information, v isit the Autism Speaks
or a psychologist. In some cases, a team of Autism Treatment N etwork at autismspeaks.org/ atn.
specialists may have evaluated your child and
provided recommendations for treatment. The team Once you have received a formal diagnosis, it is im-
may have included an aud iologist to rule out portant to make sure that you ask for a comprehensive
hearing loss, a speech & language therapist to report that includes the diagnosis in writing, as well as
determine language skills and needs and an recommendations for treatment. The doctor may not
occupational therapist to evaluate physical and be able to provide this for you at the appointment, as
motor skills. A multi-disciplinary evaluation is it may take some time to compile, but be sure to follow
important for diagnosing autism and other challenges up and pick up this helpful necessary report as soon
that often accompany autism, such as delays in as it’ s available.
motor skills. If your child has not been evaluated by
a multi-disciplinary team, you will want to make sure
further evaluations are conducted so that you can
learn as much as possible about your child’ s
individual strengths and needs.

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 100 DAY KIT

What is Autism?
Autism spectrum d isord er ( ASD ) and autism are
both general terms for a group of complex disorders
of brain development. These disorders are charac-
terized, in varying degrees, by difficulties in social
interaction, verbal and nonverbal communication and
repetitive behaviors. With the May 2 0 1 3 publication
of the fifth edition of the American Psychiatric
Association’s Diagnostic and Statistical Manual
of Mental Disorders ( commonly referred to as the
DSM-5 ) , all autism disorders were merged into
one umbrella diagnosis of ASD. Previously, they
were recognized as distinct subtypes, including
autistic disorder, child hood d isintegrativ e
d isord er, perv asiv e d ev elopmental d isord er-not
other ise specified ( DD S) and Asperger
Synd rome. The DSM is the main diagnostic
reference used by mental health professionals and
insurance providers in the U nited States.
hyporeactivity to sensory input or unusual interest in
Y ou may also hear the terms Classic Autism or
sensory aspects of the environment. Symptoms can
anner’s Autism (named after the first psychiatrist to
be currently present or reported in past history.
describe autism) used to describe the most severe
In addition to the diagnosis, each person evaluated
form of the disorder. U nder the current DSM-5 , the
will also be described in terms of any known genetic
diagnosis of autism req uires that at least six develop-
cause ( e.g. Fragile X syndrome, Rett syndrome) ,
mental and behavioral characteristics are observed,
level of language and intellectual disability and pres-
that problems are present before the age of three and
ence of medical conditions such as seizures, anxiety,
that there is no evidence of certain other conditions
depression and/ or gastrointestinal ( GI) problems.
that are similar.
The DSM-5 has an additional category called Social
There are two d omains where people with ASD
C ommunication D isord er ( SC D ) . This allows for
must sho persistent deficits
a diagnosis of disabilities in social communication,
1) persistent social communication and social without the presence of repetitive behavior. SCD is
interaction a new diagnosis and much more research and
2 ) restricted and repetitive patterns of behavior information is needed. There are currently few guide-
lines for the treatment of SCD. U ntil such guidelines
More specifically, people with ASD must demon- become available, treatments that target social-
strate (either in the past or in the present) deficits communication, including many autism-specific inter-
in social-emotional reciprocity, deficits in nonverbal ventions, should be provided to individuals with SCD.
communicative behaviors used for social interaction
and deficits in developing, maintaining and under- To read the whole D SM -5 criteria, please v isit
standing relationships. In addition, they must show autismspeaks.org/ d sm-5 .
at least two types of repetitive patterns of behavior,
including stereotyped or repetitive motor movements,
insistence on sameness or inflexible adherence to
routines, highly restricted, fixated interests, hyper or

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How Common is Autism? In other words, in the presence of a genetic pre-

disposition to autism, a number of non-genetic or
Autism statistics from the U.S. Centers for Disease environmental influences further increase a child’s
Control and Prevention (CDC) released in March risk. The clearest evidence of these environmental
2014 identify around 1 in 68 American children as on risk factors involves events before and during birth.
the autism spectrum – a ten-fold increase in preva- They include advanced parental age at time of con-
lence in 40 years. Careful research shows that this ception (both mom and dad), maternal illness during
increase is only partly explained by improved diag- pregnancy, extreme prematurity, very low birth weight
nosis and awareness. Studies also show that autism and certain difficulties during birth, particularly those
is four to five times more common among boys than involving periods of oxygen deprivation to the baby’s
girls. An estimated 1 out of 42 boys and 1 in 189 girls brain. Mothers exposed to high levels of pesticides
are diagnosed with autism in the United States. and air pollution may also be at higher risk of having
a child with ASD. It is important to keep in mind that
ASD affects over 2 million individuals in the U.S. these factors, by themselves, do not cause autism.
and tens of millions worldwide. Moreover, govern- Rather, in combination with genetic risk factors, they
ment autism statistics suggest that prevalence rates appear to modestly increase risk.
have increased 10% to 17% annually in recent
years. There is no established explanation for this A small but growing body of research suggests that
continuing increase, although improved diagnosis autism risk is lower among children whose mothers
and environmental influences are two reasons took prenatal vitamins (containing folic acid) in the
often considered. months before and after conception.

Increasingly, researchers are looking at the role of

What Causes Autism? the immune system in autism. Autism Speaks is

working to increase awareness and investigation of
these and other issues where further research has
Not long ago, the answer to this question would have the potential to improve the lives of those who
been “we have no idea.” Research is now delivering struggle with autism.
the answers. First and foremost, we now know that
there is no one cause of autism, just as there is no While the causes of autism are complex, it is abun-
one type of autism. Over the last five years, scien- dantly clear that it is not caused by bad parenting.
tists have identified a number of rare gene changes Dr. Leo Kanner, the psychiatrist who first described
or mutations associated with autism. Research has autism as a unique condition in 1943, believed that
identified more than 100 autism risk genes. In around it was caused by cold, unloving mothers. Bruno
15% of cases, a specific genetic cause of a person’s Bettelheim, a renowned professor of child develop-
autism can be identified. However, most cases in- ment, perpetuated this misinterpretation of autism.
volve a complex and variable combination of genetic Their promotion of the idea that unloving mothers
risk and environmental factors that influence early caused their children’s autism created a generation of
brain development. parents who carried the tremendous burden of guilt
for their child’s disability. In the 1960s and 70s,
Dr. Bernard Rimland, the father of a son with autism
who later founded the Autism Society of America and
the Autism Research Institute, helped the medical
community understand that autism is a biological
disorder and is not caused by cold parents.

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 100 DAY KIT

More Information about

Symptoms of Autism
Autism affects the way an individual perceives the
world and makes communication and social interac-
tion difficult. Autism spectrum disorders (ASD) are
characterized by social-interaction difficulties,
communication challenges and a tendency to engage
in repetitive behaviors. However, symptoms and their
severity vary widely across these three core areas.
Taken together, they may result in relatively mild
challenges for someone on the high functioning end
of the autism spectrum. For others, symptoms may
be more severe, as when repetitive behaviors and
lack of spoken language interfere with everyday life.

It is sometimes said that if you know

one person with autism, you know one Social symptoms
person with autism. Typically developing infants are social by nature.
They gaze at faces, turn toward voices, grasp a
While autism is usually a life long condition, all finger and even smile by 2 to 3 months of age. By
children and adults benefit from interventions, or contrast, most children who develop autism have
therapies, that can reduce symptoms and increase difficulty engaging in the give-and-take of everyday
skills and abilities. Although it is best to begin inter- human interactions. By 8 to 1 0 months of age, many
vention as soon as possible, the benefits of therapy infants who go on to develop autism are showing
can continue throughout life. The long term outcome some symptoms such as failure to respond to their
is highly variable. A small percentage of children names, reduced interest in people and delayed
lose their diagnosis over time, while others remain babbling. By toddlerhood, many children with autism
severely affected. Many have normal cognitiv e have difficulty playing social games, don’t imitate the
skills, despite challenges in social and language actions of others and prefer to play alone. They may
abilities. Many individuals with autism develop fail to seek comfort or respond to parents’ displays
speech and learn to communicate with others. of anger or affection in typical ways.
Early intervention can make extraordinary differ-
ences in your child’s development. How your child Research suggests that children with autism are
is functioning now may be very different from how attached to their parents. However, the way they
he or she will function later on in life. express this attachment can be unusual. To parents,
it may seem as if their child is disconnected. Both
The information following on the social children and adults with autism also tend to have diffi-
symptoms, communication d isord ers and culty interpreting what others are thinking and feeling.
repetitiv e b ehav iors associated with autism Subtle social cues such as a smile, wave or grimace
is partially taken from the N ational Institute may convey little meaning. To a person who misses
of M ental H ealth ( N IM H ) web site. these social cues, a statement like “ Come here! ”
may mean the same thing, regardless of whether the
speaker is smiling and extending her arms for a hug

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 100 DAY KIT

or frowning and planting her fists on her hips. When language begins to develop, people with autism
Without the ability to interpret gestures and facial may use speech in unusual ways. Some have difficulty
expressions, the social world can seem bewildering. combining words into meaningful sentences. They may
speak only single words or repeat the same phrase
Many people with autism have similar difficulty over and over. Some go through a stage where they
seeing things from another person’ s perspective. repeat what they hear verbatim ( echolalia) .
Most five-year-olds understand that other people
have different thoughts, feelings and goals than they Many parents assume difficulties expressing language
have. A person with autism may lack such under- automatically mean their child isn’ t able to understand
standing. This, in turn, can interfere with the ability to the language of others, but this is not always the case.
predict or understand another person’ s actions. It is important to distinguish between expressive lan-
guage and receptive language. Children with difficulties
It is common – but not universal – for those with in expressive language are often unable to express
autism to have difficulty regulating emotions. This what they are thinking through language, whereas
can take the form of seemingly “ immature” behavior children with difficulties in receptive language are
such as crying or having outbursts in inappropriate often unable to understand what others are saying.
situations. It can also lead to disruptive and physically Therefore, the fact that your child may seem unable to
aggressive behavior. The tendency to “ lose control” express him or herself through language does not
may be particularly pronounced in unfamiliar, over- necessarily mean he or she is unable to comprehend
whelming or frustrating situations. Frustration can the language of others. Be sure to talk to your doctor
also result in self-inj urious behaviors such as head or look for signs that your child is able to interpret
banging, hair pulling or self-biting. language, as this important distinction will affect the
Fortunately, children with autism can be taught how way you communicate with him or her.
to socially interact, use gestures and recognize facial It is important to understand the importance of prag-
expressions. Also, there are many strategies that matics when looking to improve and expand upon your
can be used to help the child with autism deal with child’ s communication skills. ragmatics are social
frustration so that he or she doesn’ t have to resort rules for using language in a meaningful context or
to challenging behaviors. We will discuss this later. conversation. While it is important that your child learns
how to communicate through words or sentences, it
is also key to emphasize both when and where the
Communication difficulties specific message should be conveyed. Challenges in
Y oung children with autism tend to be delayed in bab- pragmatics are a common feature of spoken language
bling, speaking and learning to use gestures. Some difficulties in children with autism. These challenges
infants who later develop autism coo and babble may become more apparent as your child gets older.
during the first few months of life before losing these Some mildly affected children exhibit only slight
communicative behaviors. Others experience signifi- delays in language or even develop precocious
cant language delays and don’ t begin to speak until language and unusually large vocabularies – yet have
much later. With therapy, however, most people with difficulty sustaining a conversation. Some children and
autism do learn to use spoken language and all can adults with autism tend to carry on monologues on a
learn to communicate. favorite subj ect, giving others little chance to comment.
Many nonverbal or nearly nonverbal children and In other words, the ordinary “ give-and-take” of conver-
adults learn to use communication systems such as sation proves difficult. Some children with ASD with
pictures, sign language, electronic word processors superior language skills tend to speak like little
or even speech-generating devices. professors, failing to pick up on the “ kid-speak” that’ s
common among their peers.

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 100 DAY KIT

Another common difficulty is the inability to under- someone or something disrupts the order. Along
stand body language, tone of voice and expressions these lines, many children and adults with autism
that aren’t meant to be taken literally. For example, need and demand extreme consistency in their
even an adult with autism might interpret a sarcastic environment and daily routine. Slight changes can
“Oh, that’s just great!” as meaning it really is great. be extremely stressful and lead to outbursts.

Conversely, individuals affected by autism may not Repetitive behaviors can take the form of intense
exhibit typical body language. Facial expressions, preoccupations or obsessions. These extreme inter-
movements and gestures may not match what they ests can prove all the more unusual for their content
are saying. Their tone of voice may fail to reflect their (e.g. fans, vacuum cleaners or toilets) or depth of
feelings. Some use a high-pitched sing-song or a knowledge (e.g. knowing and repeating astonishingly
flat, robot-like voice. This can make it difficult for detailed information about Thomas the Tank Engine
others to know what they want and need. This failed or astronomy). Older children and adults with autism
communication, in turn, can lead to frustration and may develop tremendous interest in numbers,
inappropriate behavior (such as screaming or symbols, dates or science topics.
grabbing) on the part of the person with autism.
Fortunately, there are proven methods for helping Many children with autism need and demand
children and adults with autism learn better ways to absolute consistency in their environment.
express their needs. As the person with autism
learns to communicate what he or she wants,
challenging behaviors often subside.

Children with autism often have difficulty letting

others know what they want or need until they
are taught how to communicate through speech,
gestures or other means.

Repetitive behaviors
Unusual repetitive behaviors and/or a tendency to
engage in a restricted range of activities are another
core symptom of autism. Common repetitive behav-
iors include hand-flapping, rocking, jumping and
twirling, arranging and rearranging objects and
repeating sounds, words or phrases. Sometimes
the repetitive behavior is self-stimulating, such as
wiggling fingers in front of the eyes.

The tendency to engage in a restricted range of

activities can be seen in the way that many children
with autism play with toys. Some spend hours lining
up toys in a specific way instead of using them for
pretend play. Similarly, some adults are preoccupied
with having household or other objects in a fixed
order or place. It can prove extremely upsetting if

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Unique Abilities that May

Accompany Autism
Along with the challenges that autism involves, you
may have noticed that your child also exhibits
areas of strength. Although not all children have The follo ing is adapted from Sally onoff
special talents, it is not uncommon for individuals Geraldine Da son and ames Mc artland s
with autism to have exceptional skills in math, A Parent’s Guide to Asperger’s Syndrome and
music, art and reading, among others. These areas High-Functioning Autism.
of expertise can provide great satisfaction and
pride for the child with autism. If possible, incorpo-
rate your child’ s areas of expertise into his or
her everyday activities and use them whenever Just as individuals with autism have a variety of
possible as a way for him or her to learn and excel. difficulties, they also have some distinctive strengths.
Some of the strengths that individuals with autism
have may include:

- Ability to understand concrete concepts,

rules and seq uences
- Strong long term memory skills
- Math skills
- Computer skills
- Musical ability
- Artistic ability
- Ability to think in a visual way
- Ability to decode written language at an early
age ( This ability is called Hyperlexia – some
children with autism can decode written
language earlier than they can comprehend
written language. )
- Honesty – sometimes to a fault
- Ability to be extremely focused – if they are
working on a preferred activity
- Excellent sense of direction

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100 DAY KIT

“How Can My Child Have Autism

When He Seems So Smart?”
From Does My Child Have Autism? by Wendy Stone

Right now you might be thinking about all the things

your child with autism learned at a much younger age
than other children you know. And yes, you are right:
there are also things that children with autism learn
on their own much faster than their typically develop-
ing peers or siblings. For example, they can be very
good at learning to pick out their favorite DVD from
a stack, even when it’s not in its case. They may
learn at a very young age how to operate the remote
controls to the TV and DVD player so that they can
rewind their videos to their favorite parts (or fast for-
ward through the parts they don’t like). They can be
very creative in figuring out ways to climb up on the
counter to reach a cabinet that has their favorite cere-
al or even how to use the key to unlock the dead bolt
on the back door so they can go outside to play on
the swing. Clearly, these are not behaviors that you
would even think about trying to teach a two-year-old
child. And yet some children with autism somehow
manage to acquire these skills on their own. How can
we understand this inconsistency between the things
children with autism do and don’t learn? How can
a child who can’t put different shapes into a shape
sorter learn to turn on the TV and DVD player, put a
DVD in and push the play button? How can a child
who can’t understand a simple direction like “get your
coat” figure out how to unlock a door to get outside?

What accounts for this unique learning style? In a

word: motivation. We all pay attention better to the
things that interest us, so we become much more
proficient at learning them. Understanding what is
motivating to your child (all children are different) will
be one of the keys to increasing their learning and
their skills. Your child’s special talents may be part of
his unique and inherent learning style and nature.

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 100 DAY KIT

Physical and Medical Issues that

May Accompany Autism
Seizure disorders
Sei ure Disorder, also called epilepsy, occurs in as ou can find more information about autism
many as one third of individuals with autism spec- and epilepsy at
trum disorder. Epilepsy is a brain disorder marked by autismspeaks.org/ family-serv ices/ epilepsy.
recurring seizures or convulsions. Experts propose
that some of the brain abnormalities that are associ-
ated with autism may contribute to seizures. These
abnormalities can cause changes in brain activity by
disrupting neurons in the brain. Neurons are cells in
the brain that process and transmit information and
send signals to the rest of the body. Overloads or
disturbances in the activity of these neurons can
result in imbalances that cause seizures.

Epilepsy is more common in children who also have

cognitiv e deficits. Some researchers have suggest-
ed that seizure disorder is more common when the
child has shown a regression or loss of skills. There
are different types and subtypes of seizures and a
child with autism may experience more than one
type. The easiest to recognize are large “grand mal”
( or tonic-clonic) seizures. Others include “petit mal”
( or ab sence) seizures and subclinical sei ures, Genetic disorders
which may only be apparent in an EEG ( electro-
Some children with autism have an identifiable genetic
encephalogram) . It is not clear whether subclinical
condition that affects brain development. These genetic
seizures have effects on language, cognition and
disorders include Fragile X syndrome, Angelman
behavior. The seizures associated with autism usually
syndrome, tuberous sclerosis, chromosome 1 5 duplica-
start either early in childhood or during adolescence,
tion syndrome and other single-gene and chromosomal
but may occur at any time. If you are concerned that
disorders. While further study is needed, single gene
your child may be having seizures, you should see a
disorders appear to affect 1 5 to 2 0 % of those with ASD.
neurologist. The neurologist may order tests that may
Some of these syndromes have characteristic features
include an EEG , an M RI ( Magnetic Resonance
or family histories, the presence of which may prompt
Imaging) , a C T ( Computed Axial Tomography) and a
your doctor to refer your child to a geneticist or neurolo-
C BC ( Complete Blood Count) . Children and adults
gist for further testing. The results can help increase
with epilepsy are typically treated with anticonv ul-
awareness of associated medical issues and guide
sants or seizure medicines to reduce or eliminate
treatment and life planning.
occurrences. If your child has epilepsy, you will work
closely with a neurologist to find the medicine (or
combination of medicines) that works the best with
the fewest side effects and to learn the best ways to
ensure your child’s safety during a seizure.

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 100 DAY KIT

Gastrointestinal (GI) disorders

Many parents report gastrointestinal ( G I) problems
in their children with autism. The exact prevalence of
gastrointestinal problems such as gastritis, chronic
constipation, colitis and esophagitis in individuals
with autism is unknown. Surveys have suggested
that between 4 6 and 8 5 % of children with autism
have problems such as chronic constipation or
diarrhea. One study identified a history of gastrointes-
tinal symptoms ( such as abnormal pattern of bowel
movements, freq uent constipation, freq uent vomiting
and freq uent abdominal pain) in 7 0 % of the children
with autism. If your child has similar symptoms, you
will want to consult a gastroenterologist, preferably
one who works with people with autism. Y our child’ s
physician may be able to help you find an appropriate
specialist. Pain caused by GI issues is sometimes
recognized because of a change in a child’s behavior, Sleep dysfunction
such as an increase in self-soothing behaviors like
Is your child having trouble getting to sleep or sleep-
rocking or outbursts of aggression or self-inj ury.
ing through the night? Sleep problems are common
Bear in mind that your child may not have the
in children and adolescents with autism. Having a
language skills to communicate the pain caused
child with sleep problems can affect the whole fam-
by GI issues. Treating GI problems may result in
ily. It can also have an impact on the ability of your
improvement in your child’ s behavior. Anecdotal
child to benefit from therapy. Sometimes sleep issues
evidence suggests that some children may be
may be caused by medical issues such as ob struc-
helped by dietary intervention for GI issues, including
tiv e sleep apnea or gastroesophageal reflux and
the elimination of dairy and gluten containing foods.
addressing the medical issues may solve the prob-
( F or more information, see G l u ten F ree C asein F ree
lem. In other cases, when there is no medical cause,
diet in th e treatment section of th is ki t. ) As with any
sleep issues may be managed with behavioral inter-
treatment, it is best to consult your child’ s physician
ventions including “s leep-hygiene” measures, such
to develop a comprehensive plan. In January 2 0 1 0 ,
as limiting the amount of sleep during the day and
Autism Speaks initiated a campaign to inform
establishing regular bedtime routines. There is some
pediatricians about the diagnosis and treatment of
evidence of abnormality of melatonin regulation in
GI problems associated with autism.
children with autism. While melatonin may be effec-
or additional information from the fficial tive for improving the ability of children with autism
ournal of American Academy of ediatrics to fall asleep, more research is needed. Melatonin
go to ped iatrics.aappub lications.org/ cgi/ or sleep aids of any kind should not be given without
content/ full/ 1 2 5 / Supplement_ 1 / S1 . first consulting with your child’s physician.

F or information that can b e shared with your or additional information on sleep issues visit
child s doctor go to autismspeaks.org/ press/ autismspeaks.org/ science/ resources-programs/
gastrointestinal_ treatment_ guid elines.php. autism-treatment-network/ tools-you-can-use/
sleep-tool-kit.

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 100 DAY KIT

Sensory Integration Dysfunction

Many children 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
( v estib ular 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 a child with
Sensory Integration D ysfunction ( SID ) , the clinical
term for this characteristic. ( SID may also be called
Sensory Processing Disorder or Sensory Integration
Disorder.) SIDs can involve hypersensitivity ( also
known as sensory d efensiv eness) or hyposensi-
tivity. An example of hypersensitivity would be an
inability to tolerate wearing clothing, being touched V isit the Autism Speaks Tool Kits page to d own-
or being in a room with normal lighting. H yposensi- load tool kits with information and resources
tiv ity might be apparent in a child’ s increased related to pica for b oth parents and professionals
tolerance for pain or a constant need for sensory at autismspeaks.org/ family-serv ices/ tool-kits.
stimulation. Treatment for Sensory Integration
Dysfunction is usually addressed with occupational
therapy and/ or sensory integration therapy. Mental health
Oftentimes a child diagnosed with ASD may receive
Pica an additional diagnosis such as Attention Deficit
H yperactiv ity D isord er ( AD H D ) . AD H D and anxiety
ica is an eating disorder involving eating things that are q uite common and addressing these diagnoses
are not food. Children between 1 8 and 2 4 months properly can help your child make great strides.
of age often eat nonfood items, but this is typically Recent studies suggest that 1 in 5 children on the
a normal part of development. Some children with autism spectrum also has ADHD and 30 struggle
autism and other developmental disabilities persist with an anxiety disorder such as social phobia,
beyond the developmentally typical timeframe and separation anxiety, panic disorder and specific
continue to eat items such as dirt, clay, chalk or paint phobias. The classic symptoms of ADHD include
chips. Children showing signs of persistent mouthing chronic problems with inattention, impulsivity and
of fingers or objects, including toys, should be tested hyperactivity. However, these or similar symptoms
for elevated blood levels of lead, especially if there can likewise result from autism. For this reason, it
is a known potential for environmental exposure to is important that evaluation be made by someone
lead. Y ou should speak to your doctor about these with expertise in both disorders. A recent study found
concerns so he or she can help you with treatment. that just 1 in 10 children with autism and ADHD was
Y our child’ s doctor will help you to assess if your child receiving medication to relieve the ADHD symptoms.
needs a behavioral intervention or if it is something
that can be managed at home.

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 100 DAY KIT

In regards to anxiety, children with autism express

anxiety or nervousness in many of the same ways
as typically developing children. Understandably,
many individuals with ASD have trouble communi-
cating how they feel. Outward manifestations may
be the best clues. In fact, some experts suspect that
outward symptoms of anxiety – such as sweating
and acting out – may be especially prominent among
those with ASD. This can include a racing heart,
muscular tensions and stomachaches. It is important
for your child to be evaluated by a professional who
has expertise in both autism and anxiety so he or she
can provide the best treatment options for your child.

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 100 DAY KIT

You, Your Family

and Autism
How Will I Deal with This
Diagnosis?
You are never prepared for a diagnosis of autism. It
is likely that you will experience a range of emotions.
It is painful to love so much, to want something so
much and not quite get it. You want your child to get
better so badly that you may feel some of the stages
commonly associated with grieving. You may “revisit”
these feelings from time to time in the future. Part of
moving forward is dealing with your own needs and
emotions along the way.

Denial
Stages associated with grieving You may go through periods of refusing to believe
Elisabeth Kübler-Ross, M.D., a Swiss-American what is happening to your child. You don’t con-
psychiatrist, outlined five stages in the grief process. sciously choose this reaction; it just happens. During
Grief does not progress in an orderly way that follows this time, you may not be able to hear the facts as
a predictable path. It is normal to move forwards and they relate to your child’s diagnosis. Don’t be critical
backwards among the five stages, skip a stage or be of yourself for reacting this way. Denial is a way of
stuck in one. Her five stages are outlined here. coping. It may be what gets you through a particularly
difficult period. You must, however, be aware that
you are in denial, so that it doesn’t cause you to lose
focus on your child’s treatment. Try not to “shoot the
messenger.” When a professional, a therapist or a
teacher tells you something that is hard to hear about
your child, consider that he or she is trying to help
you so that you can address the problem. It is impor-
tant not to alienate people who can give you helpful
feedback and help monitor your child’s progress.
Whether you agree or not, try to thank them for the
information. If you are upset, try considering the infor-
mation when you have had a chance to calm down.

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 100 DAY KIT

Anger
With time, your denial may give way to anger. of moving forward. Allowing yourself to feel sadness
Although anger is a natural part of the process, you can help you grow. You have every right to feel sad
may find that it’s directed at those closest to you – and to express it in ways that are comfortable.
your child, your spouse, your friend or at the world Crying can help release some of the tension that
in general. You may also feel resentment toward builds up when you try to hold in sadness. A good cry
parents of typical children. Your anger may come out can get you over one hurdle and help you face the
in different ways – snapping at people, overreacting next. If you find that your sadness is interfering with
to small things, even screaming and yelling. Anger your ability to cope or you show other symptoms of
is normal. It is a healthy and expected reaction to depression, such as weight loss, social withdrawal,
feelings of loss and stress that come with this diag- suicidal thoughts, sleep difficulties, low self-esteem or
nosis. Expressing your anger releases tension. It is loss of interest in daily activities, consult your family
an attempt to tell the people around you that you hurt physician who can recommend treatment.
and are outraged that this diagnosis has happened
to your child. “­ My husband had a harder time
accepting our son’s diagnosis at first.
“I felt angry when a child at my son’s When Max began making progress
school was diagnosed with Leukemia in his ABA program, everything changed
around the time our son was diagnosed for the better. For a while, I was the
with autism. Everyone sent cards and one holding everything together for
cooked dinners for them. They didn’t all of us.”
know I needed that kind of help too.
When I let people know I needed help
Acceptance
they came through for me.” Ultimately, you may feel a sense of acceptance. It’s
helpful to distinguish between accepting that your
Bargaining child has been diagnosed with autism and accepting
This stage involves the hope that the diagnosis can autism. Accepting the diagnosis simply means that
be undone. The feeling of helplessness you may be you are ready to advocate for your child. The period
experiencing might create a need to regain control following an autism diagnosis can be very challeng-
of the situation. Many parents will ask themselves ing, even for the most harmonious families. Although
questions like: What if we had gotten our child in to the child with autism may never experience the nega-
the doctor earlier? What if it was caused by some- tive emotions associated with the diagnosis, parents,
thing we did? You may also question the diagnosis or siblings and extended family members may each
search for another doctor hoping that he or she might process the diagnosis in different ways, and at differ-
tell you something different. ent rates. Give yourself time to adjust. Be patient with
yourself. It will take some time to understand your
Sadness or Grief child’s disorder and the impact it has on you and your
Many parents must mourn the loss of some of the family. Difficult emotions may resurface from time to
hopes and dreams they had for their child before time. There may be times when you feel helpless and
they can move on. There will probably be many times angry that autism has resulted in a life that is much
when you feel extremely sad. Friends may refer to different than you had planned. But you will also
this as being “depressed,” which can sound frighten- experience feelings of hope as your child begins to
ing. There is, however, a difference between sadness make progress.
and depression. Depression often stands in the way

15
 100 DAY KIT

Caring for the Caregiver

Changing the course of the life of your child with Here are some tips from parents who
autism can be a very rewarding experience. You are have experienced what you are
making an enormous difference in his or her life. To
make it happen, you need to take care of yourself.
going through:
Take a moment to answer these questions: Where
Get going.
does your support and strength come from? How are
Getting your child started in treatment will help. There
you really doing? Do you need to cry? Complain?
are many details you will be managing in an intensive
Scream? Would you like some help but don’t know
treatment program, especially if it is based in your
who to ask?
home. If you know your child is engaged in meaning-
ful activities, you will be more able to focus on
Remember that if you want to take moving forward. It may also free up some of your
the best possible care of your child, time so you can educate yourself, advocate for your
you must first take the best possible child and take care of yourself.
care of yourself.
Ask for help.
Parents often fail to evaluate their own sources of Asking for help can be very difficult, especially at first.
strength, coping skills or emotional attitudes. You Don’t hesitate to use whatever support is available to
may be so busy meeting the needs of your child that you. People around you may want to help, but may
you don’t allow yourself time to relax, cry or simply not know how. Is there someone who can take your
think. You may wait until you are so exhausted or other kids somewhere for an afternoon? Or cook
stressed out that you can barely carry on before you dinner for your family one night so that you can
consider your own needs. Reaching this point is not spend the time learning? Can someone pick a few
helping you or your family. You may feel that your things up for you at the store or do a load of laundry?
child needs you right now, more than ever. Your “to Or let other people know you are going through a
do” list may be what is driving you forward right now. difficult time and could use a hand?
You may feel completely overwhelmed and not know
where to start. There is no single way to cope. Each Talk to someone.
family is unique and deals with stressful situations Everyone needs someone to talk to. Let someone
differently. Getting your child started in treatment will know what you are going through and how you feel.
help you feel better. Acknowledging the emotional Someone who just listens can be a great source of
impact of autism and taking care of yourself during strength. If you can’t get out of the house, use the
this stressful period will help prepare you for the chal- phone to call a friend.
lenges ahead. Autism is a pervasive, multi-faceted Consider joining a support group.
disorder. It will not only change the way that you look It may be helpful to listen or talk to people who have
at your child, it will change the way you look at the been or are going through a similar experience.
world. Maintaining open and honest communication Support groups can be great sources of information
with your partner and family as well as discussing about what services are available in your area and
your fears and concerns will help you to deal with the who provides them. You may have to try more than
many changes in your life. As some parents may tell one to find a group that feels right to you. You may
you, you may be a better person for it. The love and find you aren’t a “support group kind of person.” For
hope that you have for your child make you stronger many parents in your situation, support groups
than you realize. provide valuable hope, comfort and encouragement.

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 100 DAY KIT

Y ou may also want to consider attending a recre- C onsid er keeping a journal.

ational program for children with autism. This may Louise DeSalvo, in W riting as a W ay of H eal ing , notes
be a good way to meet other parents j ust like you. that studies have shown that: “ Writing that describes
traumatic events and our deepest thoughts and feel-
One study from Vanderbilt U niversity, a part of the
ings about them is linked with improved immune
Autism Speaks Autism Treatment Network, found that
function, improved emotional and physical health, and
mothers of children with autism benefit significantly
positive behavioral changes.” Some parents have
from weekly stress-reduction classes led by other
found a j ournal to be a helpful tool for keeping track of
mothers. The classes reduced previously high levels
their child’ s progress, what is working and what isn’ t.
of personal stress, anxiety and depression and im-
Be mindful of the time you spend on the internet. The
proved the mom’ s interactions with their children.
internet will be one of the most important tools you
have for learning what you need to know about autism
“At my support group I met a group of and how to help your child.
women who were juggling the same U nfortunately, there is more information on the web
things I was. It felt so good not to feel than any of us have time to read in a lifetime. There
may also be a lot of misinformation.
like I was from another planet!”
As a parent, always rememb er to trust your gut.
ou may find a listing of support groups in There are many paths to take, treatment options and
the Autism Speaks Resource G uid e at opinions. Y ou know your child best. Work with your
autismspeaks.org/ resource-guid e. Another child’s treatment team to find what works best for your
avenue is through the local SE TA (Special child and your family.
Education arent Teacher Association) in
your school d istrict or online through the Right now, while you are trying to make the most of
Autism Speaks F aceb ook page at every minute, keep an eye on the clock and freq uently
faceb ook.com/ autismspeaks. ask yourself these important q uestions:
Is what I’m reading right now very likely to be
M y Autism Team, the social network for parents
relevant to my child?
of kid s with autism, is another great resource.
n this site parents of children ith autism Is it new information?
share their experiences including their revie s Is it helpful?
of local serv ice prov id ers, to help inform the
Is it from a reliable source?
parents in their communities. V isit the site at
myautismteam.com. Sometimes, the time you spend on the internet will
be incredibly valuable. Other times, it may be better for
Try to take a b reak. you and your child if you use that time to take
If you can, allow yourself to take some time away, care of yourself.
even if it is only a few minutes to take a walk. If it’ s
possible, getting out to a movie, going shopping or The internet will be one of the most im-
visiting a friend can make a world of difference. If you portant tools you have for learning what
feel guilty about taking a break, try to remind your-
self that this break will help you feel renewed for the
you need to know about autism and how
things you need to do when you get back. Try to get to help your child.
some rest. If you are getting regular sleep, you will
be better prepared to make good decisions, be more
patient with your child and more able to deal with the
stress in your life.

17
 100 DAY KIT

Becoming Resilient During

Times of Adversity
by Dr eter austino school psychologist state delegate to the
ational Association of School sychologists ( AS ) and member
of the Autism Speaks F amily Serv ices C ommittee

Resiliency, or finding ways to properly adapt to Having trustworthy information and feeling more
challenges or stress in your life, is a process, not a competent ( not only about autism but in other
character trait. Research has revealed several key el- aspects of your life) can be critical in maintaining a
ements in fostering resilience and by considering the hopeful outlook.
following, you will find you are not only helping your
child but yourself and your entire family. Care Eventually, your j ourney will lead to a place
where you can balance negative emotions with
Connectedness One of the strongest pillars in positive ones. Taking care to avoid seeing an event
resilience is having positive relationships or feeling as unbearable or unchangeable versus looking for
connected to others. While the diagnosis of autism opportunities and considering the event in a broader
may be extraordinary at first, it no longer is synony- context can be an important factor to resilience.
mous with being alone or having few places to turn Positive attitudes such as encouraging yourself to
for help. This tool kit is only one example of the ways try, being determined to persevere until success is
in which Autism Speaks can lend support. Regional attained, applying a problem solving approach to
chapters of Autism Speaks all across the country can difficult situations and fostering feelings of determi-
open up doors to other parents, families and com- nation or grit are critical. Care also refers to parents
munities who have experience with navigating the attending to their own mind and body, exercising
autism diagnosis. When relationships with friends, regularly, as well paying attention to basic needs
neighbors and family are based on mutual, reciprocal and feelings.
support and care, they can bolster resiliency.
R esil ience is th e resu l t of indivi du al s b eing ab l e to
Competence Whenever a challenge presents itself, interact w ith th eir envi ronments and th e p rocesses
individuals can feel a loss of control over the situa- th at eith er p romote w el l b eing or p rotect th em ag ainst
tion and their lives. Competence or at this early stage overwhelming influence of risk factors. In many
learning about autism and then taking action on cases, adve rsity can act as a sp ring b oard for g row th
realistic goals will help you gain a sense of control. and su ccess, not onl y in ou r ch il dren, b u t in ou rsel ve s
as w el l .

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 100 DAY KIT

“Is Your Son On the Spectrum?”

In her own words,
Alysia K. Butler, who has a recently diagnosed son, describes her
experience being part of the autism community.

The question was slightly jarring to me. My son and I in my eyes. We did belong here. This was the right
had just walked into a gymnastics class for kids with place for him. We had found a safe place for him to
autism. We had received his diagnosis only three exercise and develop his muscles in an environment
weeks before and we hadn’t shared our news with that understood his special needs. For so long we
anyone except for close friends and family. It was the had avoided the “regular” gym classes, music classes
first time we had been anywhere that was just for kids and playgroups because of his behavior. No one here
like mine and I wasn’t really ready to talk to a total was giving me the usual disapproving looks we get
stranger about it. when we’re out places and Henry starts to act up. I
took a deep breath and turned to the mom.
“Yes,” I answered, trying to keep
“Hi! My son Henry was diagnosed with PDD-NOS a
the conversation short.
few weeks ago. We do live in town. In fact, I’ve seen
“Hi and welcome! That’s my son over there and my your son at the preschool that my son attends. How
name is Sandy. How old is your son? Do you live long has your son attended classes here?”
in town? How long have you known your son was
It took everything I had to have that conversation, but
on the spectrum? What was his diagnosis?” I re-
it was such a relief. This other mom was reaching out
ally didn’t want to answer her. I wasn’t even sure we
to make a connection – to find someone else who
belonged at this class and all I wanted to do was pay
struggles on a daily basis like she does – something
attention to my son to see how he was responding
I myself had been desperate to do for weeks and
to the class. I watched the other kids as they came
months. I was instantly welcomed into a community
in – six boys and one girl – and my first instinct was
of people who “get it.” No one batted an eye when
that we were in the wrong place. One little boy was
Henry buried himself under the foam blocks at the
crying, another was spinning in circles and another
end of class so he didn’t have to leave. I got comfort-
one was running in all different directions. My son‘s
ing looks of understanding from all the parents and
not like that, I thought to myself. This isn’t us.
teachers when he had a major meltdown leaving
And then I looked at my Henry. I watched him hold the gym and big thumbs up from everyone when we
tightly to his one-on-one helper’s hand as they finally got our shoes on and went out the door. These
walked on a low balance beam, but he wouldn’t look were moms and dads who shared my daily difficul-
her in the eye when she talked to him. I watched ties of just getting out of the house. Finally, we were
him try to run away to jump into the comfort of the somewhere that felt like we belonged.
sensory foam blocks and become so focused on that
foam pit that he couldn’t move on to anything else. “Will we see you next week?” asked
I listened to him babble while he swayed back and the mom.
forth on the rings and saw the terror in his face when
the noise level got up too high. The tears welled up
“Absolutely,” I replied.

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 100 DAY KIT

What Should We Know

About our Younger or
Future Children?
As discussed below, genetic risk factors contribute
to autism. If you are expecting another child or have
plans to expand your family in the future, you may
be concerned about the development of any younger
siblings of your child with autism. Studies show that
if you have a child diagnosed with an autism spectrum
disorder, the risk of the next child also being diag-
nosed with an ASD is between 1 0 and 2 0 % . The risk
for ASD is higher for boys than girls and for baby sib-
lings who have more than one older sibling with ASD.
However, statistics are changing and there are several exponentially over the past decade, supported by
ongoing research studies that are studying the recur- the formation of the consortium, which has enabled
rence rate or likelihood that autism will be diagnosed researchers from around the world to meet and
in a second or third child. For the most recent findings share their ideas, methods and data. Consortium
and updated research on the rate of recurrence and members carry out their own studies focusing pri-
susceptibility of autism in siblings, please visit marily on younger siblings of children with ASD or
earlistud y.org. The EARL I study is a nationwide effort other high risk infants. Each member is supported
to investigate the genetic and environmental contribu- by public, private or foundation funding. The group
tions to autism in a high risk group, that is, younger collaborates on studies and publications, pooling
siblings of children who have received a diagnosis. collective data and knowledge to enhance the ability
to contribute to this important area of research and
More recent evidence has suggests that distinct early provide help to families.
signs of autism may be seen in some children as
young as 8 to 1 0 months of age. For example, infants In 2 0 0 7 , a group of researchers within the BSRC,
who later develop autism may be more passive, more together with psychologists from around the U .S.,
difficult to soothe or may fail to orient when their name formed the Autism Speaks Tod d ler Treatment
is called. Some of these early signs may be noticed by N etwork ( TTN ) . The goal of the network is to deter-
parents, others may only be observed with the help of mine whether intervention between the ages of 1 8
a trained clinician. These signs become more pro- to 2 4 months affects developmental outcomes at an
nounced by 1 8 to 2 4 months. age when autism can be more reliably diagnosed.
Today, the network involves more than 6 0 investiga-
Through a j oint venture between Autism Speaks and tors from around the world studying the effective-
the National Institute of Child Health and Human De- ness of early intervention and the utility of parent-
velopment, research on the early signs and symptoms mediated approaches. They have begun to shift their
of autism has been accelerated. Called the focus from research in the clinic to implementation
H igh Risk Bab y Sib lings Research C onsortium in “ real life” community settings, so more people can
( BSRC ) , the goal is to improve the lives of individu- benefit from them.
als affected with ASD by making discoveries that will
help researchers develop new ways to treat or even
prevent some debilitating symptoms by intervening
at an early age. The pace of this research has grown

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 100 DAY KIT

If you are interested in participating in a research

project studying the earliest signs of autism, visit
AutismSpeaks.org/science/research-initiatives/
high-risk-baby-sibs or find a research project in
your area at
autismspeaks.org/science/participate-
in-research.

These studies provide intense observation,

documentation and feedback by experts in the field
on the development of your child with autism and
any other children at risk for autism.

If you are interested in other intervention reacted to my son’s diagnosis. Everyone asked what
programs that are not part of these studies, visit they could do to help and they showed us so much
the Resource Guide on the Autism Speaks web- support. I know his grandparents read books and
site to help find an early intervention program in articles on the disorder so they could better under-
your area. autismspeaks.org/resource-guide. stand him. My mother even quit her job to help me
through this very difficult time.” Yes, reactions vary
widely. But whatever reaction you get, it will be very
important to educate your parents about the nature of
How Will This Affect Our autism after you have told them about the diagnosis.
To begin your discussion, you might talk about spe-
Family? cific behaviors. For example: “You know those be-
haviors we’ve been confused about for so long? Well,
Even though it is your child who has the diagnosis, now we have a name for them and an explanation for
it is important to acknowledge that autism affects the why they occur. Howie doesn’t act the way he does
whole family. This section of your tool kit may help because he’s spoiled or because he’s shy or because
you anticipate some of the emotions you and other he doesn’t like us – he acts that way because he has
people in your family will experience. autism. Autism explains why he doesn’t speak or use
gestures and why he doesn’t seem to understand
The article below, adapted from Does My Child Have what we say. It explains why he’s not as interested in
Autism? by Wendy L. Stone, Ph.D., provides some interacting with us as the other children in the family
helpful information for talking to your parents and have been and why he plays with spoons and bottles
close family members about the diagnosis. instead of toys. I know this is upsetting news for all of
us. But the good news is that the disorder has been
Breaking the news diagnosed early and there are a lot of things we can
do to help him. He’ll be starting some therapies soon
Sometimes telling your parents about your child’s and I’ll be learning about things I can do to help him
diagnosis can be extremely difficult, especially with at home. I know that you will need some time to think
your own emotions running so high. It’s hard to know about all of this. But if you have any questions as we
what to expect; I’ve seen that parental reactions to begin his therapy, I’ll be glad to try my best to answer
this news can vary dramatically. One young mother them. I know we’re all hoping for the best outcome
told me, “My mother-in-law told us that we shouldn’t possible.” After the initial conversation about this
bring my son to family gatherings until he grows up. diagnosis, continue to keep your other children and
It’s heartbreaking to hear her say that she would your extended family in the information loop.
rather not see any of us for years instead of trying
to understand her own grandson.” But then I’ve also Autism doesn’t affect only one child.
been told, “We were very touched by how our family
It affects the entire family.
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 100 DAY KIT

Sharing Your Struggle with Family and Friends

The following excerpt from the book Overcoming Autism, by Lynn Kern Koegel, Ph.D.
and Claire LaZebnik, offers suggestions for how to tell people and explains why, for
some people, it can make life easier for you and your friends.

You should, you know. Tell people. You don’t have Real friends don’t love you more for being success-
to walk up to strangers on the street or anything, but ful or less for having problems. If anything, it works
confide in the people who love you. That was one the opposite way – we’re all so busy that sometimes
thing we did right: we told our families and our friends we forget to stay in touch with friends when every-
right away. First we called them, and then we copied a thing’s fine for them, but we rush forward when they
good comprehensive article someone wrote about need us. Now is the time to take advantage of that.
autism and annotated it with specifics about Andrew, Talk your friends’ ears off, complain, bitch and moan
and we mailed it out to everyone we knew. (You could to them. You’re dealing with a huge challenge, take
do the same things with sections from this book, by advantage of every minor plus it has to offer.
the way.) None of our good friends pulled away from
us because our kid had autism. Just the opposite – Some families have downloaded this Autism
our friends and families rallied around us in amazing Speaks 100 Day Kit and sent it to their family
ways and have continued to cheer Andrew’s progress members and close friends to provide more
on year after year. In all honesty, telling people what information about autism and what their
we were going through only made our lives easier. family may be going through. The kit can be
Before then, we worried that Andrew’s occasionally downloaded at autismspeaks.org/family-services/
aberrant behavior was off-putting. But once he had a tool-kits/100-day-kit.
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.

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 100 DAY KIT

15 Tips for Your Family

As a result of her work with many families who deal
so gracefully with the challenges of autism, family
therapist athryn Smerling, Ph.D., offers five tips for
parents, five for siblings and five for extended family
members:

5 tips for parents

1. L earn to b e th e b est advo cate you can b e for you r
ch il d. B e informed. T ake adva ntag e of al l th e servi ces
th at are ava il ab l e to you in you r commu nity. Y ou w il l
meet p ractitioners and p rovi ders w h o can edu cate
you and h el p you . Y ou w il l g ath er g reat streng th from
th e p eop l e you meet.

2 . D on’ t p u sh you r feel ing s aw ay. T al k ab ou t th em.

Y ou may feel b oth amb iva l ent and ang ry. T h ose are
emotions to be expected. It’s okay to feel conflicting
emotions.

3 . T ry to direct you r ang er tow ards th e disorder and

not towards your loved ones. When you find yourself
arg u ing w ith you r sp ou se ove r an au tism rel ated
issu e, try to rememb er th at th is top ic is p ainfu l for
b oth of you ; and b e carefu l not to g et mad at each you rsel f. M ake friends w ith oth er p arents w h o h ave
oth er w h en it real l y is th e au tism th at h as you so ch il dren w ith au tism. B y meeting oth er p arents you
u p set and ang ry. T ry to h av e some semb l ance of an w il l h ave th e su p p ort of famil ies w h o u nderstand you r
adu l t l ife. B e carefu l to not l et au tism consu me eve ry day to day ch al l eng es. G etting invo l ve d w ith au tism
w aki ng h ou r of you r l ife. S p end q u al ity time w ith you r advo cacy is emp ow ering and p rodu ctive . Y ou w il l b e
typ ical l y deve l op ing ch il dren and you r sp ou se and doing someth ing for you rsel f as w el l as you r ch il d b y
refrain from constantl y tal ki ng ab ou t au tism. E ve ry- b eing p roactive .
one in you r famil y needs su p p ort and to b e h ap p y
desp ite th e circu mstances.
“Learning more about my child’s
4 . Ap p reciate th e smal l vi ctories you r ch il d may unique needs and abilities along with
ach ieve . L ove you r ch il d and take g reat p ride in each
reaching out for support has enabled
smal l accomp l ish ment. F ocu s on w h at h e or sh e can
do instead of maki ng comp arisons w ith a typ ical l y my husband and me to be better
deve l op ing ch il d. L ove you r ch il d for w h o h e or sh e is. parents to our son and better partners
for each other on this journey.”
5 . G et invo l ve d w ith th e au tism commu nity. D on’ t
u nderestimate th e p ow er of “ commu nity” . Y ou may b e
th e cap tain of you r team, b u t you can’ t do eve ryth ing

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 100 DAY KIT

5 tips for brothers and sisters

1. R ememb er th at you are not al one! E ve ry famil y is
confronted w ith l ife’ s ch al l eng es… and yes, au tism is
ch al l eng ing … b u t, if you l ook cl osel y, nearl y eve ryone
has something difficult to face in their families.

2 . B e p rou d of you r b roth er or sister. L earn to tal k

ab ou t au tism and b e op en and comfortab l e describ -
ing the disorder to others. If you are comfortable with
the topic…they will be comfortable too. If you are
emb arrassed b y you r b roth er or sister, you r friends
w il l sense th is and it w il l make it aw kw ard for th em.
If you talk openly to your friends about autism, they
w il l b ecome comfortab l e. B u t, l ike eve ryone el se,
sometimes you w il l l ove you r b roth er or sister and
sometimes you may not like him or her. It’s okay to
feel you r feel ing s. And often it’ s easier w h en you
h ave a p rofessional cou nsel or to h el p you u nderstand
th em – someone sp ecial w h o is h ere j u st for you !
L ove you r b roth er or sister th e w ay h e or sh e is!
“At first I felt lost and confused about
3 . W h il e it is oka y to b e sad th at you h ave a b roth er my brother but now that my parents
or sister affected b y au tism, it doesn’ t h el p to b e have helped to explain things to me, I
u p set and ang ry for ext ended p eriods of time. Y ou r can be a better big brother and help my
ang er doesn’ t ch ang e th e situ ation; it onl y make s you brother when he needs it.”
u nh ap p ier. R ememb er you r M om and D ad may h ave
th ose feel ing s too.
5 . F ind an activi ty you can do w ith you r b roth er or
4 . S p end time w ith you r p arents al one. D oing th ing s sister. You will find it rewarding to connect with your
tog eth er as a famil y w ith and w ith ou t you r b roth er or b roth er or sister, eve n if it is j u st p u tting a simp l e
sister strengthens your family bond. It’s okay for you p u zl e tog eth er. N o matter h ow imp aired h e or sh e
to w ant al one time. H avi ng a famil y memb er w ith may b e, doing someth ing tog eth er creates a cl ose-
au tism can often b e ve ry time- consu ming and ness. Y ou r b roth er or sister w il l l ook forw ard to th ese
attention- g rab b ing . Y ou need to feel imp ortant too. sh ared activi ties and g reet you w ith a sp ecial smil e.
R ememb er, eve n if you r b roth er or sister didn’ t h ave
au tism, you w ou l d stil l need al one time w ith M om
and D ad.

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 100 DAY KIT

5 tips for grandparents and extended

family members
1. F amil y memb ers h ave a l ot to offer. E ach famil y
memb er is ab l e to offer th e th ing s h e or sh e l earned
to do b est ove r time. Ask h ow you can b e h el p fu l to
you r famil y. Y ou r efforts w il l b e ap p reciated w h eth er
it means taki ng care of th e ch il d so th at th e p arents
can g o ou t to dinner or raising money for th e
sp ecial sch ool th at h el p s th e ch il d. O rg anize a l u nch ,
a theatre benefit, a carnival or a card game. It will
w arm you r famil y’ s h earts to kn ow th at you are
p itch ing in to create su p p ort and cl oseness.

2 . Seek out your own support. If you find yourself

having a difficult time accepting and dealing with the
fact th at you r l ove d one h as au tism, seek ou t you r
ow n su p p ort. Y ou r famil y may not b e ab l e to p rovi de
you w ith th at ki nd of su p p ort, so you mu st b e con- 5 . C arve ou t sp ecial time for each ch il d. Y ou can
siderate and look elsewhere. In this way you can be enj oy sp ecial moments w ith b oth typ ical l y deve l op ing
strong er for th em, h el p ing w ith th e many ch al l eng es famil y memb ers and th e famil y memb er w ith au tism.
th ey face. B e op en and h onest ab ou t th e disorder. Y es, th ey may b e different, b u t al l of th e ch il dren
T h e more you tal k ab ou t th e matter, th e b etter you l ook forw ard to sp ending time w ith you . C h il dren w ith
w il l feel . Y ou r friends and famil y can b ecome you r autism thrive on routines, so find one thing that you
su p p ort system…b u t onl y if you sh are you r th ou g h ts can do tog eth er th at is stru ctu red, eve n if it is simp l y
with them. It may be hard to talk about it at first, but going to a park for 15 minutes. If you go to the same
as time goes on, it will be easier. In the end, your p ark eve ry w eek, ch ances are ove r time th at activi ty
ex p erience w ith au tism w il l end u p teach ing you w il l b ecome easier and easier…i t j u st take s time and
and you r famil y p rofou nd l ife l essons. patience. If you are having a difficult time trying to
determine w h at you can do, ask you r famil y. T h ey w il l
3 . Pu t j u dg ment aside. C onsider you r famil y’ s feel - sincerel y ap p reciate th e effort th at you are maki ng .
ing s and b e su p p ortive . R esp ect th e decisions th ey
make for th eir ch il d w ith au tism. T h ey are w orki ng There are also speciali ed tool kits for specific
ve ry h ard to exp l ore and research al l op tions and people in your life To access them visit
are typ ical l y coming to w el l th ou g h t ou t concl u sions. autismspeaks.org/ family-serv ices/ tool-kits/ family-
T ry not to comp are ch il dren. ( T h is g oes for typ ical l y support-tool-kits.
deve l op ing ki ds as w el l . ) C h il dren w ith au tism can
b e b rou g h t u p to ach ieve th eir p ersonal b est. “Talking to other grandparents helped
me to feel part of a bigger community
4 . Learn more about autism. It affects people of all and to learn more about my grand-
social and economic statu ses. T h ere is p romising
research , w ith many p ossib il ities for th e fu tu re. S h are
daughter. I am now able to help my
th at sense of h op e w ith you r famil y, w h il e edu cating family the best I can and spend quality
you rsel f ab ou t th e b est w ays to h el p manag e th is time with each of my grandchildren.”
disorder.

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 100 DAY KIT

Developmental Milestones: Some parents express difficulty in understanding

Understanding Your Child’s whether their child’s behavior is developmentally

appropriate or related to his or her diagnosis of an

Behavior autism spectrum disorder. This can lead to increased

frustration and uncertainty of how to respond to specif-
ic behaviors. Based on a child’s developmental level,
When a child is diagnosed with ASD, it can be difficult parents are able to better assess whether their child’s
to figure out which symptoms are a result of autism behavior is developmentally appropriate or warrants
and which are just typical for development. The further discussion with their pediatrician. For example,
information below from Ashley Murray, Psy.M., Emily it can be helpful for parents to know that it is develop-
Schreiber, M.A. and Rebekah Ridgeway, Psy.D. can mentally appropriate for a two-year-old child to begin
help parents to navigate these behaviors. testing his or her parents’ limits and having temper
tantrums (e.g., dropping to the floor, crying, pounding
fists). However, this behavior is not considered de-
velopmentally appropriate if your child is in his or her
middle school years. Additionally, in terms of social
interaction, it is considered developmentally appropri-
ate for one-year-olds to enjoy playing by themselves
with toys. However, by preschool age, children should
be engaging in cooperative play with others.

Oftentimes parents of children with autism spectrum

disorders have the most difficulty determining if their
child’s social and emotional development is appropri-
ate for his or her age or if the child’s behaviors are
related to the diagnosis. To help make this distinction,
understanding developmental milestones for these
two areas can be useful. The following chart presents
social and emotional developmental milestones and
is separated by the child’s age. Having resources to
identify developmental milestones can aid parents
in assessing their child’s behavior and determining if
they should seek additional support for their concerns.

If your child is demonstrating behavior that you be-

lieve is not developmentally appropriate, it is always
important to discuss this with your pediatrician and
other members of the treatment team. Your team may
be able to make suggestions on how best to address
these concerns and make referrals as needed for ad-
ditional evaluations. Additionally, if you have concerns
regarding other areas of your child’s development,
your treatment team can provide you with expected
milestones in all areas of development.

26
 100 DAY KIT

Birth to 6 M onths 2 Y ears to 3 Y ears

- S h ow s ex citement b y w av ing arms, k ick ing - B eg ins to deve l op a sense of indep endence
and w ig g l ing - E nj oys p raise
- F ears l ou d or u nex p ected noise, strang e - T ests p arental l imits and h as an increased
ob j ects, su dden mov ements and p ain l eve l of emotion ( e. g . , l au g h ing , temp er
- Imitates smiles, other’s movements tantru ms, crying )
- E nj oys interactions ( e. g . , smil es, tick l es, - Is fearful of loud noises, quick movements,
b eing h el d) w ith oth ers l arg e animal s and sep aration from careg ive r
- L au g h s ou t l ou d and smil es social l y - T ries to “ h el p ” adu l ts w ith actions ( e. g . , w ash ing
- Pl ays p eek - a- b oo dish es, va cu u ming , h ammering )

- M ay enj oy l ook ing at th emsel v es in th e mirror - Pl ays w ith ob j ects in symb ol ic p l ay ( e. g . , p l ay-
ing h ou se, u sing toy tool s to “ make rep airs” )
- R esp onds to oth er p eop l e’ s emotions

3 Y ears to 4 Y ears
6 M onths to 1 Y ear
- B eg ins to deve l op more indep endence
- B ecomes u nh ap p y w h en th e p rimary and sel f- rel iance
careg iv er l eav es
- M ay b e fearfu l of strang ers, animal s and
- W ith draw s from strang ers th e dark
- E nj oys b eing h el d and cu ddl ed - H as a desire to p l ease adu l ts
- B eg ins to imitate b eh av iors of oth ers - S h ow s a w ide rang e of emotions
- M ay p u sh , p u l l or p ok e oth er ch il dren - M ay b ecome u p set w ith maj or ch ang es
- Is able to distinguish familiar people in rou tine
from strang ers - B eg ins to enj oy p l aying in g rou p s
- W h en l oses a toy, may disp l ay a reaction - B ecomes more interested in oth ers
- W ith p romp ting , b eg ins to sh are and take tu rns
1 Y ear to 2 Y ears
- M ay p retend to act ou t scenes from movi es
- S eeks ou t attention of h is or h er p rimary or b eg inning dramatic p l ay ( e. g . , p retending
careg ive r or an adu l t h e or sh e feel s to b e animal s)
comfortab l e w ith
- B eg ins to deve l op a l eve l of tru st in oth ers
REFERENCES
- H as temp er tantru ms
Division of Birth Defects, National Center on Birth Defects and
- Is generally in a happy mood, but may Developmental Disabilities and Centers for Disease Control and
b ecome ang ry w h en oth ers interfere w ith Prevention ( 2 0 1 4 ) . Learn the Signs. Act Early. Milestones Check-
h is or h er activi ties list. D eve l op mental M il estones. Retrieved April 1 6 , 2 0 1 4 from
- M ay b ecome fru strated du e to not b eing cdc gov ncbddd actearly milestones index html
ab l e to fu l l y ve rb al ize h is or h er th ou g h ts Feldman, R. S. ( 2 0 1 2 ) . C h il d deve l op ment ( 6 th ed.) . Boston, MA:
and w ants U niversity of Massachusetts Amherst.
- M ay b e p ossessive of toys and enj oy Public Broadcasting Service ( n.d.) . Social and Emotional Devel-
p l aying al one opment. T h e W h ol e C h il d. Retrieved April 1 6 , 2 0 1 4 from
pb s.org/ wholechild / ab c/ social.html
- E nj oys interacting w ith famil iar adu l ts
Washington State Department of Social and Health Services
( n.d.) .The Child Development Guide. U sing th e C h il d D eve l op -
ment G u ide. Retrieved April 1 6 , 2 0 1 4 from d shs.wa.gov / ca/
fosterparents/ training/ chid ev / cd 0 6 .htm

27
 100 DAY KIT

Getting Your Child There is no debate or doubt: early intervention is

Services
your child’ s best hope for the future. Early attention
to improving the core behavioral symptoms of autism
will give your child – and the rest of the family –
several important benefits that you will not gain if you
How Do I Get the Help My take a wait-and-see approach until your child enters
school at age four or five. A good early intervention
Child Needs? program has at least four benefits

The road ahead will be bumpy. There will be times 1. It will provide your child with instruction that
when your progress stalls or takes an unexpected w il l b u il d on h is or h er streng th s to teach new ski l l s,
turn. When it does, try to remind yourself that these imp rove b eh avi ors and remediate areas
are speed bumps, not roadblocks. Take them one at of w eakn ess.
a time. It is important that you start now. There are a
variety of services available to treat and educate your 2 .It will provide you with information that will help
child. The article below, from D oes M y C h il d H ave you b etter u nderstand you r ch il d’ s b eh avi or and
Au tism? by Wendy L. Stone, PhD, with Theresa Foy needs.
DiGeromino, MEd, explains why:
3 . It will offer resources, support and training that
w il l enab l e you to w ork and p l ay w ith you r ch il d more
effective l y.

4 . It will improve the outcome for your child.

For these reasons, an intervention program for your

child should be implemented as soon as possible
after he or she receives a diagnosis. However, as
you probably know by now, it can be very challeng-
ing to teach young children with autism. They have
a unique profile of strengths and needs and require
intervention services and teaching approaches that
are sensitive to these needs. That’ s why strategies
that worked for teaching your other children to remain
seated at the dinner table, to play appropriately with
a toy or to say words simply don’ t work as well for
your child with autism. In the same way, interven-
tion programs that are generic – rather than autism-
specialized – are less likely to be effective for your
child. That’ s why as you begin your exploration of
early intervention, you must keep in mind that not all
interventions are eq ual.
Early Intervention will improve the
outcome for your child.

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 100 DAY KIT

Accessing Services: Your Child’s Rights

to Public Education Advocating for your child s education is a very
important role and at times can seem ov er-
Every child has the right to a free appropriate educa- whelming and confusing. Two b ooks that may
tion. The Ind iv id uals with D isab ilities Ed ucation be helpful are
Act ( ID EA) , enacted in 1 9 7 5 , mandates a public
education for all eligible children and makes the Wrightslaw: From Emotions to Advocacy -
schools responsible for providing the supports and The Special Education Survival Guide
services that will allow this to happen. IDEA was most by Pam Wright and Pete Wright
recently revised in 2 0 0 4 ( and, in fact, renamed the How to Compromise with Your School District
Individuals with Disabilities Education Improvement Without Compromising Your Child
Act, but most people still refer to it as IDEA) . The law by Gary Mayerson
mandates that the state provide an eligible child with
a free appropriate public education that meets his or ou ill also find additional books and ebsites
her uniq ue individual needs. at the end of this kit that will b e helpful in this
IDEA specifies that children with various disabilities, process. Y ou, as a parent, are entitled to b e treat-
including autism, are entitled to early intervention ed as an eq ual partner with the school d istrict in
services and special education. In addition, the d ecid ing on an ed ucation plan for your child .
IDEA legislation has established an important team
approach and a role for parents as eq ual partners in
the planning for an individual child and promotes an
What is a “Free and Appropriate
education in the least restrictive environment. Y ou, Public Education” (FAPE)?
as a parent, are entitled to be treated as an eq ual
As described previously, IDEA provides for a “ free
partner with the school district in deciding on an
and appropriate education” for all children with
education plan for your child and his or her individual
disabilities. Each word in this phrase is important,
needs. This enables you to be a powerful advocate
but “appropriate” is the one that relates specifically to
for your child. It also means that you must be an in-
your special needs child. Y our child is entitled to an
formed, active participant in planning and monitoring
education that is tailored to his or her special needs
your child’ s uniq ue program and legal rights.
and a placement that will allow him or her to make
In addition to the IDEA stipulations, the Americans educational progress.
with Disabilities Act of 1 9 9 0 ( ADA) sets forth, as a
Although you and your child’ s teachers or therapists
civil right, protections and provisions for eq ual access
may want to provide your child with the best and
to education for anyone with a disability. Section 5 0 4
optimal programs and services, the school district is
of the Rehabilitation Act of 1 9 7 3 is another civil rights
simply req uired to provide an appropriate education.
law that prohibits discrimination on the basis of dis-
One of the challenges here is working with the school
ability in programs and activities, public and private,
district to determine what is appropriate and therefore
that receive federal financial assistance. enerally,
what will be provided for your child. This is a collabor-
the individuals protected by these laws include
ative process and may req uire considerable negotia-
anyone with a physical or mental impairment that
tion in order to secure the appropriate services from
substantially limits one or more life activities.
the school.

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 100 DAY KIT

tant to note that philosophies about inclusion vary

What is “Least Restrictive considerably among school districts, staff and
parents of students with and without special needs.
Environment” (LRE)?
IDEA provides for a team approach to planning so
As specified in the IDEA, your child is entitled to that the obj ectives of all members of the team can
experience the “l east restrictiv e env ironment” in be considered and the necessary supports can be
schools. This means that your child should be placed put in place to maximize inclusion. Not all parents
in the environment in which he or she has the great- will feel that a mainstream environment will enhance
est possible opportunity to interact with children the growth and development of their student with
who do not have a disability and to participate in special needs and allowances need to be made to
the general education curriculum. The child must be accommodate various perspectives. Additionally, not
educated in the school he or she would attend if not all students will be ready for full inclusion all of the
disabled to the maximum extent appropriate and time. The anxiety and sensory issues related to
supported with the aids and services req uired to inclusion may mean that efforts should begin with
make this possible. This does not mean that every small steps that can generate ongoing success and
student has to be in a general education classroom, increase participation within the local student body
but the obj ective is to place the student in as natu- and community.
ral a learning environment as possible, within his or
her home community. This decision is made by the
members of the Individualized Education Program
( IEP) team, with consideration of the myriad of issues
Early Intervention Services
related to appropriate environment and supports for
the student. Placements and the LRE for a particular (EI) for Children Under the
student may change over time.

The participation of children with disabilities in the

Age of Three
general education environment is often referred to The IDEA provides states with federal grants to
as “m ainstreaming” or “i nclusion” . Inclusion does institute Early Interv ention programs. Any child
not mean that a child with special needs should be younger than age three who has a developmental
placed into a general education setting j ust like a typi- delay or a physical or mental condition likely to result
cal learner; a variety of special education supports in a developmental delay is eligible to receive early
should be provided in order to create a successful intervention services through these programs. EI
environment and positive experience for everyone services can vary widely from state to state and
involved. Careful planning and training are essential region to region. However, the services should
to providing modifications or accommodations and to address your child’ s uniq ue needs and should not
successfully situating a child with a disability in the be limited to what is currently available or customary
least restrictive setting. These supports might include in your region.
providing a specially trained classroom or one-on-one
paraprofessional, altering testing environments or The document that spells out your child’ s needs and
expectations, adapting curriculum, providing visual the services that will be provided is the Ind iv id ual
supports or adaptive eq uipment, etc. The special amily Service rogram ( S ). The IFSP should
education department should provide training, be based on a comprehensive evaluation of your
strategies and support for general education staff child. It should describe your child’ s current levels of
and others in the general school community who may functioning and the anticipated goals. It should also
interact with students with special needs. It is impor- list the specific services that will be provided to your

30
 100 DAY KIT

child and your family. EI services are aimed at mini- be met. U nlike the IFSP, the IEP is almost entirely
mizing the impact of disabilities on the development related to how the needs of your child will be met
of your child. Services for your child may include, within the context of the school district and inside
but are not limited to, speech and language instruc- school walls.
tion, occupational therapy, physical therapy, Applied
Behavior Analysis ( ABA) and psychological evalua- Information ab out the L egal Rights and
tion. Services for families may include training to help rocedures for Special Education Services
reinforce the affected child’ s new skills and counsel- can b e found in Individualize d Education Plan
ing to help the family adapt. ( IEP) : Summary, Process and Practical Tips, a
guide created by la firm Good in rocter
nformation about the egal Rights and roce- on the Autism Speaks ebsite at
d ures for Early Interv ention in your state can b e autismspeaks.org/ family-serv ices/
found in the Autism Speaks Resource G uid e at tool-kits/ iep-guid e.
autismspeaks.org/ resource-guid e.
There are E forms from the guide included at
Click on your state and you ill find the informa- the end of this kit.
tion und er Early Interv ention/ State Information.
Y ou can also read more ab out legal information
In this same section of the Autism Speaks Resource in your state b y v isiting the Autism Speaks
uide you will also find state specific information on Resource G uid e at
the process of transitioning from Early Intervention autismspeaks.org/ resource-guid e.
Services to Special Education Services.
Click on your state and you ill find the
ou can learn more about early intervention at information under reschool Age or School
autismspeaks.org/ b log/ 2 0 1 2 / 1 0 / 2 6 / ev aluating- Age Serv ices/ State Information.
early-interv entions.
Y ou can also v iew the Autism Speaks School
C ommunity Tool Kit at autismspeaks.org/ school.

Special Education Services

for Children Ages 3 - 22
Special Education services pick up where early in-
tervention services leave off, at age three. Y our 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 services address 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 child’ s needs and

how these needs will be met is the ndividuali ed
Education rogram ( E ). Like the IFSP, the IEP
describes your child’ s strengths and weaknesses,
sets goals and obj ectives and details how these can

31
 100 DAY KIT

Extended School Year (ESY)

Services
If there is evidence that your child experiences a
substantial regression in skills during school vaca-
tions, he or she may be entitled to Extended School
Y ear ( ESY ) services. These services would be pro-
vided over long breaks from school ( such as summer
vacation) to prevent substantial regression, but not
to acq uire new skills. It is important for the family to
remain involved in determining appropriate goals,
communicating with the educational team about your
child’ s progress and working to provide consistency
between home and school life.

How Do I Get Services Before serv ices can b e prov id ed , it may b e

necessary to complete further assessments
Started for My Child? and evaluations These may include
An unstructured diagnostic play session
If your child is under the age of three, call your lo- A developmental evaluation
cal Early Intervention agency. In most states, Early
A speech-language assessment
Intervention is provided by the Department of Health.
Contact information is included in the Autism Speaks A parent interview
Resource Guide. If your child is three or older, con- An evaluation of current behavior
tact your local school district, more specifically the
An evaluation of adaptive or real life skills
Office of Special Education within the school district.
In some cases, you may need to put the req uest in ou may find yourself spending some time in wait-
writing that you would like your child evaluated for ing rooms with your child when you are completing
special education services. Refer to “ Assembling additional evaluations. Y ou have probably already
our Team” in this kit for more information. ou’ll find figured out how helpful it is to bring some snacks
more in the Action Plan section of this kit. for your child, his or her favorite toy or some other
form of entertainment to help pass the time. Waiting
for the completion of these additional evaluations,
which may be req uired by the school district or early
intervention services, may be frustrating. There are
sometimes waiting lists, so it is important to start the
process as soon as possible. The additional evalu-
ations will 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.

“I was overwhelmed in the beginning by all the evaluations and paperwork.

But watching the changes in Samantha as she learns and grows, we know
our efforts are paying off.”
32
 100 DAY KIT

The purpose of the evaluations is to understand your

child’ s challenges so that he or she can get the
appropriate services that he or she needs. The
Organization for Autism Research’s A Parent’ s G u ide
to Assessment can be helpful in explaining the results
of the evaluations and what they mean for your child.
The guide can be found at
researchautism.org/ resources/ read ing/
d ocuments/ AssessmentG uid e.pd f.

If you find you are spinning your wheels waiting for

the results, there are things you can be doing 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 It can sometimes be difficult to read
autism. There is a list of suggested books and web- some of the evaluations about your
sites at the end of this kit, as well as in the Autism child’s strengths and challenges.
Speaks Resource Library at
autismspeaks.org/ family-serv ices/
It’s helpful to remember that your
resource-lib rary. child is the same child as before the
diagnosis and all of the evaluations.

Autism and Insurance Autism Speaks Insurance L ink was developed

to help families navigate the complexities of health
While there are effective treatment options for autism, insurance for autism. By answering a short series of
these services are not consistently covered by health q uestions, this online application will help parents
insurance. Since 2 0 0 7 , Autism Speaks has focused determine whether their dependent is entitled to
its state advocacy efforts on passage of meaningful autism benefits under their health insurance plan.
autism insurance reform. As of May 2 0 1 4 , 3 7 states If not covered, Autism Speaks Insurance Link will
have enacted laws that req uire certain health insur- provide parents with the tools to effectively advocate
ance plans to cover the treatment of autism, including for meaningful coverage for the treatment of autism.
Applied Behavior Analysis ( ABA) . These states
F or more information ab out Autism Speaks
appear in green on our state initiatives map at
efforts related to health insurance for autism,
autismspeaks.org/ ad v ocacy.
please email ad v ocacy@ autismspeaks.org.
U nfortunately, determining whether your insurance
And to access the Autism Speaks Insurance
plan includes a meaningful autism benefit is not
L ink please v isit
as easy as looking at a map. Not all plan types are
autismspeaks.org/ ad v ocacy/ insurancelink.
subj ect to state law. Additionally, many state autism
insurance laws further exclude certain plan types
or impose age caps that may adversely affect your “While we were waiting for EI to complete
coverage. the ‘evals’, my husband and I picked up
two copies of the same book about
autism and raced each other through it.
By the time the tests were done, we’d
learned a lot!”

33
 100 DAY KIT

How is Autism
Treatments for associated symptoms address chal-
lenges commonly associated with autism, but not
specific to the disorder. If your child has biological

Treated?
or medical conditions such as allergies, food intoler-
ances, gastrointestinal issues or sleep disturbances,
these will need to be treated too. Treatment programs
may combine therapies for both core symptoms and
Each child or adult with autism is unique and as a
associated symptoms. Your child’s treatment pro-
result, each autism intervention plan should be
gram will depend on his or her needs and strengths.
tailored to address specific needs. Treatment for
Some of these therapies may be used together. For
autism is usually a very intensive, comprehensive
example, if medical causes for sleep disturbances
undertaking that involves the child’s entire family
are ruled out, a behavioral intervention might be used
and a team of professionals. Some programs may
to address them. Occupational therapy or speech-
take place in your home. These may be based in
language therapy are often integrated into one of the
your home with professional specialists and trained
intensive therapy programs described here as core
therapists or may include training for you to serve
symptom therapies.
as a therapist for your child under the supervision
of a professional. Some programs are delivered in Therapies include a wide range of tools, services
a specialized center, classroom or preschool. It is and teaching methods that you may choose to
not unusual for a family to choose to combine use to help your child reach his or her potential.
more than one treatment method. The recommended number of hours of structured
intervention ranges from 25 to 40 hours per week
The terms “treatment” and “therapy” during the preschool period.
may be used interchangeably. The Many of the therapy methods described here are very
word “intervention” may also be used complex and will require more research on your part
to describe a treatment or therapy. before you get started. Whenever possible, observe
the therapies in action. Talk to experienced parents
We’ve provided an overview of many different treat- and make sure you have a thorough understanding
ment methods for autism in this section of your tool of what is involved before beginning any therapy for
kit. The descriptions are meant to give you general your child.
information. Your pediatrician, developmental
pediatrician or a social worker who specializes in the
treatment of children with autism can make sugges-
tions or help you prioritize therapies based on the Treatment for the Core
strengths and challenges detailed in your child’s
comprehensive evaluation. Once you have narrowed Symptoms of Autism
down some choices of appropriate therapies for your
child, you will want to explore more information Most families use one type of intensive intervention
before making a commitment to one. For many that best meets the needs of their child and their
children, autism is complicated by medical conditions, parenting style. The intensive interventions described
biological issues and symptoms that are not here require multiple hours per week of therapy and
exclusive to autism. address behavioral, developmental and/or educa-
tional goals. They are developed specifically to treat
autism. During the course of treatment, it may be
necessary to reevaluate which method is best for
your child.

34
 100 DAY KIT

For information on different treatment options,

turn to the glossary in this kit or visit
AutismSpeaks.org and view the National
Standards Project produced by the National
Autism Center at
nationalautismcenter.org/about/national.php.

To view different treatments in video format

please visit the Autism Speaks Autism Video
Glossary at
Therapies are not always delivered in autismspeaks.org/what-autism/video-glossary.

a “pure format.” Some intervention You should also see your pediatrician for more
providers who work primarily in one information, so that you can be confident you are
format may use successful techniques making informed choices as you begin to narrow
down your options.
from another format.
Before we get into the types of therapies available,
it is helpful to take a step back and look at the big- What is Applied
ger picture. Although research and experience have
revealed many of the mysteries surrounding autism, Behavioral Analysis?
it remains a complex disorder that impacts each child
differently. However, many children with autism have Behavior analysis was originally described by B.F.
made remarkable breakthroughs with the right com- Skinner in the 1930s. You may have learned about
bination of therapies and interventions. Most parents Skinner and “operant conditioning” when you studied
would welcome a cure for their child or a therapy that science in school. The principles and methods
would alleviate all of the symptoms and challenges of behavior analysis have been applied effectively
that make life difficult. Just as your child’s chal- in many circumstances to develop a wide range of
lenges can’t be summed up in one word, they can’t skills in learners with and without disabilities.
be remedied with one therapy. Each challenge must Behavior analysis is a scientifically validated
be addressed with an appropriate therapy. No single approach to understanding behavior and how it is
therapy works for every child. What works for one affected by the environment. In this context,
child may not work for another. What works for one “behavior” refers to actions and skills. “Environment”
child for a period of time may stop working. Some includes any influence – physical or social – that
therapies are supported by research that shows their might change or be changed by one’s behavior.
efficacy, while others are not. The skill, experience On a practical level, the principles and methods of
and style of the therapist are critical to the effective- behavior analysis have helped many different kinds
ness of the intervention. of learners acquire many different skills – from
Before you choose an intervention, you will need to healthier lifestyles to the mastery of a new language.
investigate the claims of each therapy so that you Behavior analysis focuses on the principles that
understand the possible risks and benefits for your explain how learning takes place. Positive reinforce-
child. At first, all of these techniques – ABA, VB, PRT, ment is one such principle. When a behavior is
DTT, ESDM, among others – may seem like alphabet followed by some sort of reward, the behavior is
soup to you. You may be confused now, but you will more likely to be repeated. Through decades of
be surprised at how quickly you become “fluent” in
the terminology of autism therapies.

35
 100 DAY KIT

research, the field of behavior analysis has An antecedent, w h ich is a ve rb al or p h ysical stimu l u s
developed many techniq ues for increasing useful su ch as a command or req u est. T h is may come from
behaviors and reducing those that may cause th e envi ronment or from anoth er p erson or b e internal
harm or interfere with learning. to th e su b j ect;

Applied Behav ior Analysis ( ABA) is the use of A resu l ting behavior, w h ich is th e su b j ect’ s ( or in th is
these techniq ues and principles to bring about case, th e ch il d’ s) resp onse or l ack of resp onse to th e
meaningful and positive change in behavior. antecedent;

Since the early 1 9 6 0 s, ABA has been used by thou- A conseq uence, w h ich dep ends on th e b eh avi or,
sands of therapists to teach communication, play, can incl u de p ositive reinforcement of th e desired
social, academic, self-care, work and community b eh avi or or no reaction for incorrect resp onses.
living skills and to reduce problem behaviors in
learners with autism. There is a great deal of ABA targets the learning of skills and the reduction of
research that has demonstrated that ABA is effec- challenging behaviors. Most ABA programs are highly
tive for improving children’ s outcomes, especially structured. Targeted skills and behaviors are based
their cognitive and language abilities. Over the past on an established curriculum. Each skill is broken
several decades, different models using ABA have down into small steps and taught using prompts that
emerged, all of which use behavioral teaching. They are gradually eliminated as the steps are mastered.
all use strategies that are based on Skinner’ s work. The child is given repeated opportunities to learn and
practice each step in a variety of settings. Each time
ABA is often difficult to understand until you see it the child achieves the desired result, he or she re-
in action. It may be helpful to start by describing what ceives positive reinforcement, such as verbal praise
all of the different methods of ABA have in common. or something else that the child finds to be highly
ABA methods use the following three step process motivating, like a small piece of candy. ABA programs
to teach: often include support for the child in a school setting
with a one-on-one aide to target the systemic trans-
fer of skills to a typical school environment. Skills
are broken down into manageable pieces and built
upon so that a child learns how to learn in a natural
environment. Facilitated play with peers is often part
of the intervention. Success is measured by direct
observation and data collection and analysis – all
critical components of ABA. If the child isn’ t making
satisfactory progress, adj ustments are made.

One type of ABA intervention is D iscrete Trial

Teaching ( also referred to as DTT, “ traditional ABA”
or the Lovaas Model, for its pioneer, Dr. Ivar Lovaas) .
DTT involves teaching individual skills one at a time
using several repeated teaching trials and reinforcers
that may or may not be intrinsically related to the
skill that is being taught.

36
 100 DAY KIT

Who provides traditional ABA or DTT? What is Verbal Behavior?

A Board Certified Behavior Analyst (BCBA) special- Verbal Behavior therapy teaches communication
izing in autism will write, implement and monitor the using the principles of Applied Behavior Analysis and
child’s individualized program. Individual therapists, the theories of behaviorist B.F. Skinner. By design,
often called “ trainers,” ( not necessarily board V erb al Behav ior therapy motivates a child, adoles-
certified) will work directly with the child on a day-to- cent or adult to learn language by connecting words
day basis. with their purposes. The student learns that words
can help obtain desired obj ects or other results.
What is a typical ABA therapy Verbal Behavior therapy avoids focusing on words as
session like? mere labels ( cat, car, etc.) . Rather, the student learns
how to use language to make req uests and commu-
Sessions are typically two to three hours long, con- nicate ideas. To put it another way, this intervention
sisting of short periods of structured time devoted to focuses on understanding why we use words.
a task, usually lasting three to five minutes. 10 to 15
minute breaks are often taken at the end of every In his book V erb al B eh avi or, Skinner classified
hour. Free play and breaks are used for incidental language into types, or “ operants.” Each has a
teaching or practicing skills in new environments. different function. Verbal Behavior therapy focuses
Effective ABA intervention for autism is not a “ one on four word types. They are:
size fits all” approach and should never be viewed as
Mand: A req u est, su ch as “ C ooki e, ” to ask for a
a “ canned” set of programs or drills. On the contrary,
cooki e
a skilled therapist customizes the intervention to each
learner’ s skills, needs, interests, preferences and Tact: A comment u sed to sh are an exp erience or
family situation. For those reasons, an ABA program draw attention, su ch as “ airp l ane” to p oint ou t an
for one learner might look somewhat different from airp l ane
a program for another learner. An ABA program will
also change as the needs and functioning of the Intraverbal: A w ord u sed to answ er a q u estion or
learner change. oth erw ise resp ond, su ch as “ W h ere do you g o to
sch ool ? ” “ C astl e Park E l ementary”
What is the intensity of most ABA Echoic: A rep eated, or ech oed, w ord, su ch as
programs? “ C ooki e? ” “ C ooki e! ” ( imp ortant as th e stu dent needs
to imitate to l earn)
Most ABA programs consist of 2 5 to 4 0 hours per
week of therapy. Families are also encouraged to use Verbal Behavior therapy begins by teaching mands
ABA principles in their daily lives. or req uests as the most basic type of language. For
example, the individual with autism learns that saying
To find more information on ABA go to the “ cookie” can produce a cookie. Immediately after the
Association for Behav ior Analysis International student makes such a req uest, the therapist reinforc-
web site at ABAinternational.org es the lesson by repeating the word and presenting
or the Behavior Analyst Certification Board the req uested item. The therapist then uses the word
web site at BAC B.com. again in the same or similar context.

37
 100 DAY KIT

Importantly, children don’t have to say the actual

word to receive the desired item. In the beginning,
he or she simply needs to signal requests by any
means. Pointing at the item represents a good start.

This helps the student understand that communicat-

ing produces positive results. The therapist builds
on this understanding to help the student shape the
communication toward saying or signing the actual
word.

Verbal Behavior therapy uses “errorless learning.”

The therapist provides immediate and frequent
prompts to help improve the student’s communi-
cation. These prompts become less intrusive as
quickly as possible, until the student no longer needs
prompting. Take, for example, the student who wants
a cookie. The therapist may hold the cookie in front
of the student’s face and say “cookie” to prompt a
response from the child. Next, the therapist would
hold up the cookie and make a “c” sound to prompt What is the intensity of most VB
the response. After that, the therapist might simply programs?
hold a cookie in the child’s line of sight and wait for
the request. The ultimate goal, in this example, is for VB programs usually involve 30 or more hours per
the student to say “cookie” when he or she wants a week of scheduled therapy. Families are encouraged
cookie – without any prompting. to use VB principles in their daily lives.

VB and classic ABA use similar behavioral formats For Information on VB, go to the Cambridge
to work with children. VB is designed to motivate a Center for Behavioral Studies website at
child to learn language by developing a connection behavior.org/vb.
between a word and its value. VB may be used as an
extension of the communication section of an ABA
program.

Who provides VB?

Verbal Behavior therapy is provided by VB-trained
psychologists, special education teachers, speech
therapists and other providers.

38
 100 DAY KIT

What is Pivotal Response

Treatment?
ivotal Response Treatment, or PRT, was devel-
oped by Dr. Robert L. Koegel, Dr. Lynn Kern Koegel
and Dr. Laura Shreibman at the U niversity of
California at Santa Barbara. PRT was previously
called the Natural Language Paradigm ( NLP) ,
which has been in development since the 1 9 7 0 s.
It is a behavioral intervention model based on the
principles of ABA.

PRT is one of the best studied and validated behav-

ioral treatments for autism. Derived from ABA, it is
play-based and child-initiated. Its goals include the
development of communication, language and
positive social behaviors and relief from disruptive
self-stimulatory behaviors.

Rather than target individual behaviors, the PRT

therapist targets “ pivotal” areas of a child’ s develop-
ment. These include motivation, response to multiple
cues, self-management and the initiation of social
interactions. The philosophy is that by targeting these
critical areas, PRT will produce broad improvements
across other areas of sociability, communication,
behavior and academic skill building.

Motivation strategies are an important part of the

PRT approach. These emphasize “natural”
reinforcement. For example, if a child makes a
meaningful attempt to req uest, say, a stuffed animal,
the reward is the stuffed animal – not a candy or
other unrelated reward.

Who provides PRT?

Some psychologists, special education teachers,
speech therapists and other providers specifically are
trained in PRT. The Koegel Autism Center offers a
PRT Certification program.

39
 100 DAY KIT

What is a typical PRT therapy What is the Early Start

session like?
Each program is tailored to meet the goals and
Denver Model (ESDM)?
needs of the individual learner and his or her school The Early Start D env er M od el ( ESD M ) is a
and home routines. A session typically involves six comprehensive behavioral early intervention
segments during which language, play and social approach for children with autism, ages 1 2 to 4 8
skills are targeted with both structured and unstruc- months. The program encompasses a develop-
tured interactions. As the child progresses, the focus mental curriculum that defines the skills to be taught
of each session changes to accommodate more at any given time and a set of teaching procedures
advanced goals and needs. used to deliver this content. It is not tied to a specific
delivery setting, but can be delivered by therapy
teams and/ or parents in group programs or
What is the intensity of a PRT individual therapy sessions in either a clinic setting
program? or the child’ s home.

PRT programs usually involve 2 5 or more hours Psychologists Sally Rogers, Ph.D., and Geraldine
per week. Everyone involved in the child’ s life is Dawson, Ph.D., developed the Early Start Denver
encouraged to use PRT methods consistently in Model as an early-age extension of the Denver
every part of his or her life. PRT has been described Model, which Rogers and colleagues developed and
as a lifestyle adopted by the affected family. refined. This early intervention program integrates
a relationship-focused developmental model with
or more information on RT visit the CSB
the well-validated teaching practices of Applied
Koegel Autism C enter web site at
Behavior Analysis ( ABA) . Its core features include
Education CSB edu autism or the CSD
the following:
Autism Research rogram ebsite at
psy3 .ucsd .ed u/ ~ autism/ prttraining.html. Naturalistic applied behavioral analytic strategies
Sensitive to normal developmental seq uence
Deep parental involvement
Focus on interpersonal exchange and positive
affect
Shared engagement with j oint activities
Language and communication taught inside a
positive, affect-based relationship

The Early Start Denver Model is the only comprehen-

sive early intervention model that has been validated
in a randomized clinical trial for use with children with
autism as young as 1 8 months of age. It has been
found to be effective for children with autism across a
wide range of learning styles and abilities.

40
 100 DAY KIT

Who provides ESDM? What is Floortime (DIR)?

An ESDM therapist may be a psychologist, behavior-
F loortime is a specific therapeutic technique based
ist, occupational therapist, speech and language
on the D ev elopmental Ind iv id ual D ifference
pathologist, early intervention specialist or devel-
Relationship M od el ( D IR) developed in the 1 9 8 0 s
opmental pediatrician. What’ s important is that the
by Dr. Stanley Greenspan. The premise of Floortime
therapist has ESDM training and certification.
is that an adult can help a child expand his or her
Parents can also be taught to use ESDM strategies. circles of communication by meeting the child at his
Parental involvement is a crucial part of the ESDM or her developmental level and building on his or her
program. If your child is receiving ESDM therapy, the strengths. Therapy is often incorporated into play
instructor will explain and model the strategies for activities – on the floor. The goal of Floortime is to
you to use at home. help the child reach six developmental milestones
that contribute to emotional and intellectual growth:
What is the intensity of most Self regulation and interest in the world
ESDM programs? Intimacy or a special love for the world of human
relations
ESDM programs usually involve 2 0 to 2 5 or more
hours per week of scheduled therapy. Families Two-way communication
are encouraged to use ESDM strategies in their Complex communication
daily lives. Emotional ideas
Emotional thinking
What is a typical ESDM session like?
In Floortime, the therapist or parent engages the child
ESDM is designed to be highly engaging and en-
at a level the child currently enj oys, enters the child’ s
j oyable for the child, while skills are systematically
activities and follows the child’ s lead. From a mutually
taught within a naturalistic, play-based interaction.
shared engagement, the parent is instructed on how
Some skills are taught on the floor during interactive
to move the child toward increasingly complex inter-
play while others are taught at the table, focusing
actions, a process known as “ opening and closing
on more structured activities. As the child develops
circles of communication.”
social skills, peers or siblings are included in the
therapy session to promote peer relationships. Floortime does not separate and focus on speech,
ESDM can be delivered in the home, the clinic or a motor or cognitive skills but rather addresses these
birth-to-three or developmental preschool setting. areas through a synthesized emphasis on emotional
development. The intervention is called Floortime
To find more information on ESDM check out
because the parent gets down on the floor with the
Play and Engagement in Early Autism: The Early
child to engage the child at his or her level. Floortime
Start Denver Model b y Rogers, SJ ., & D awson, G .
is considered an alternative to and is sometimes
( 2 0 0 9 ) or the ESDM Curriculum Checklist, also
delivered in combination with ABA therapies.
from Rogers and D awson. Information ab out
training in the ESD M mod el can b e found at
ucd mc.ucd av is.ed u/ mind institute/ research/ esd m.

41
 100 DAY KIT

Who provides Floortime? What is Relationship

Parents and caregivers are trained to implement the
approach. Floortime-trained psychologists, special Development Intervention
education teachers, speech therapists or occupation-
al therapists may also use Floortime techniq ues. (RDI)?
Like other therapies described in this tool kit,
What is a typical Floortime therapy Relationship D ev elopment Interv ention ( RD I) is
session like? a system of behavior modification through positive
reinforcement. RDI was developed by Dr. Steven
In Floortime, the parent or provider j oins in the child’ s Gutstein as a family-based behavioral treatment
activities and follows the child’ s lead. The parent using dynamic intelligence and addressing autism’ s
or provider then engages the child in increasingly core symptoms. RDI aims to help individuals with
complex interactions. During the preschool program, autism form personal relationships by gradually
Floortime includes integration with typically develop- strengthening the building blocks of social connec-
ing peers. Ideally, Floortime takes place in a calm tions. This includes the ability to form an emotional
environment. This can be at home or in a profes- bond and share experiences.
sional setting. Floortime sessions emphasize back-
and-forth play interactions. This establishes the The six ob ectives of RD are
foundation for shared attention, engagement and
problem solving. Parents and therapists help the child Emotional Referencing: th e ab il ity to u se an emo-
maintain focus to sharpen interactions and abstract, tional feedb ack system to l earn from th e su b j ective
logical thinking. exp eriences of oth ers

Social Coordination: th e ab il ity to ob serve and con-

What is the intensity of most tinu al l y reg u l ate one’ s b eh avi or in order to p articip ate
Floortime programs? in sp ontaneou s rel ationsh ip s invo l vi ng col l ab oration
and exch ang e of emotions
Floortime is usually delivered in a low stimulus
Declarative Language: th e ab il ity to u se l ang u ag e
environment, ranging from two to five hours a day.
and non- ve rb al commu nication to exp ress cu riosity,
Families are encouraged to use the principles of
invi te oth ers to interact, sh are p ercep tions and feel -
Floortime in their day-to-day lives.
ing s and coordinate you r actions w ith oth ers
To find more information on loortime go to the
Flexible Thinking: th e ab il ity to rap idl y adap t,
F loortime F ound ation web site at F loortime.org,
ch ang e strateg ies and al ter p l ans b ased u p on
Stanley Greenspan s ebsite at ch ang ing circu mstances
StanleyG reenspan.com
Relational Information Processing: th e ab il ity to
or the Interd isciplinary C ouncil on D ev elopmental
ob tain meaning b ased u p on th e l arg er context ; sol v -
and L earning D isord ers web site at IC D L .com.
ing p rob l ems th at h ave no “ rig h t- and w rong ” sol u tions

Foresight and Hindsight: the ability to reflect on

p ast exp eriences and anticip ate p otential fu tu re
scenarios in a p rodu ctive manner

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 100 DAY KIT

The program involves a systematic approach to work-

ing on building motivation and teaching skills while What is TEACCH?
focusing on the child’ s current developmental level
of functioning. Children begin work in a one-on-one The TEACCH Autism rogram is a clinical, train-
setting with a parent. When the child is ready, he or ing and research program based at the U niversity of
she is matched with a peer at a similar level of re- North Carolina – Chapel Hill. TEACCH, developed by
lationship development to form a “ dyad.” Gradually, Drs. Eric Schopler and Robert Reichler in the 1 9 6 0 s,
additional children are added, as are the number of was established as a statewide program by the North
settings in which the children practice, in order to Carolina legislature in 1 9 7 2 and has become a model
help the child form and maintain relationships in dif- for other programs around the world.
ferent contexts.
TEACCH developed the intervention approach called
“Structured TEACCHing”, an array of teaching or
Who provides RDI? treatment principles and strategies based on the
learning characteristics of individuals with ASD,
Parents, teachers and other professionals can be
including strengths in visual information processing
trained to provide RDI. Parents may choose to
and difficulties with social communication, attention
work together with an RDI-certified consultant. RDI
and executive function. In response to this profile
is somewhat uniq ue because it is designed to be
of strengths and challenges, Structured
implemented by parents. Parents learn the program
TEACCHing includes
through training seminars, books and other materi-
als and can collaborate with an RDI-certified consul- External organiza tional supports to address
tant. Some specialized schools offer RDI in a private challenges with attention and executive function
school setting.
Visual and/ or written information to supplement
verbal communication
What is a typical RDI therapy
session like? Structured support for social communication

Structured TEACCHing is not a curriculum, but

In RDI, the parent or provider uses a comprehensive
instead is a framework to support achievement of
set of step-by-step, developmentally appropriate ob-
educational and therapeutic goals. This framework
j ectives in everyday life situations, based on different
includes:
levels or stages of ability. Spoken language may be
limited in order to encourage eye contact and nonver- Physical organiza tion
bal communication. RDI may also be delivered in a
specialized school setting. Individualize d schedules

Work ( Activity) systems

What is the intensity of most RDI
Visual structure of materials in tasks
programs? and activities
Families most often use the principles of RDI in The goal of Structured TEACCHing is to promote
their day-to-day lives. Each family will make choices meaningful engagement in activities, flexibility,
based on their child. independence and self-efficacy. Structured
TEACCHing strategies are integrated into other
F ind more information on RD I on the C onnections evidenced-based practices.
C enter web site at RD Iconnect.com.

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 100 DAY KIT

What does TEACCH look like? The acronym “S CERTS” refers to the focus on:

TEACCH programs are usually conducted in a class- “S C ” Social C ommunication: Development of

room setting. TEACCH-based home programs are spontaneous, functional communication, emotional
also available and are sometimes used in conj unction expression and secure and trusting relationships with
with a TEACCH-based classroom program. Parents children and adults
work with professionals as co-therapists for their
“E R” Emotional Regulation: Development of the
children so that TEACCH techniq ues can be contin-
ability to maintain a well-regulated emotional state to
ued in the home.
cope with everyday stress and to be most available
for learning and interacting
Who provides TEACCH?
“T S” Transactional Support: Development and
TEACCH is available at the TEACCH centers in implementation of supports to help partners respond
North Carolina and through TEACCH-trained to the child’ s needs and interests, modify and adapt
psychologists, special education teachers, speech the environment and provide tools to enhance learn-
therapists and other providers in other areas of ing ( e.g., picture communication, written schedules,
the country. and sensory supports) specific plans are also devel-
oped to provide educational and emotional support to
To find more information on TEACCH
families and to foster teamwork among professionals
go to the TEACCH Autism rogram ebsite
at TEACCH com
What does a SCERTS session
look like?
What is Social The SCERTS model favors having children learn with
and from other children who provide good social and

Communication/Emotional language models in inclusive settings, as much as

possible. SCERTS is implemented using transaction-

Regulation/Transactional al supports put in place by a team, such as environ-

mental accommodations and learning supports like

Supports (SCERTS)? schedules or visual organizers.

Social C ommunication/ Emotional Regulation/ Who provides SCERTS?

Transactional Support ( SC ERTS) is an educational
SCERTS is usually provided in a school setting
model developed by Barry Prizant, PhD,
by SCERTS-trained special education teachers or
Amy Wetherby, PhD, Emily Rubin and Amy Laurant.
speech therapists.
SCERTS uses practices from other approaches
including ABA ( in the form of PRT) , TEACCH, F or more information on SC ERTS, v isit
Floortime and RDI. The SCERTS Model differs most SC ERTS.com.
notably from the focus of “ traditional” ABA by pro-
moting child-initiated communication in everyday
activities. SCERTS is most concerned with helping
children with autism to achieve “ Authentic Progress,”
which is defined as the ability to learn and
spontaneously apply functional and relevant skills in
a variety of settings and with a variety of partners.

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 100 DAY KIT

Treatment for Biological &

Medical Conditions
Associated with Autism
The next section of this tool kit covers a number of
what are freq uently called “ related services.” These
services are therapies that address symptoms
commonly associated with autism, but not specific
to the disorder.

Speech-language therapy (SLT)

Most autism behavioral intensive therapy programs
include speech-language therapy. With a variety lips to help him or her develop motor control and the
of techniq ues, speech-language therapy addresses proper oral muscular movements to speak. Speech
a range of challenges often faced by persons with therapists need to be fully trained in order to provide
autism. For instance, some individuals on the autism PROMPT therapy. To learn more about PROMPT,
spectrum do not speak, while others love to talk but visit promptinstitute.com.
have difficulty using conversational speech and/or
understanding the nuances of language and
nonverbal cues when talking with others.
Occupational therapy (OT)
ccupational therapy ( T) addresses a combina-
Speech-language therapy is designed to coordinate tion of cognitive, physical and motor skills. Its goals
the mechanics of speech with the meaning and social including helping a child or adult gain age-appropriate
use of language. Such a program begins with an independence and participate more fully in life. For
individual evaluation by a speech-language patholo- a person with autism, occupational therapy often
gist to assess an individual’ s verbal aptitudes and focuses on skills for appropriate play or leisure skills,
challenges. From this evaluation, the pathologist sets learning and self-care skills.
goals that may include mastering spoken language
and/ or learning nonverbal communication skills such Therapy begins with a certified occupational thera-
as signs or gestures. In each case, the goal is to pist evaluating the person’ s developmental level as
help the person communicate in more useful and well as related learning styles, social abilities and
functional ways. environmental needs. Based on this evaluation, the
therapist determines goals and selects strategies and
The speech language pathologist can provide ther- tactics for enhancing key skills. For instance, goals
apy one-on-one, in a small group or in a classroom may include independent dressing, feeding, grooming
setting. Therapists who work with children have ad- and use of the toilet, along with improved social, fine
ditional specialized training. motor and visual perceptual skills. Typically, occupa-
tional therapy involves half-hour to one-hour ses-
One approach used in speech-language therapy is sions with a freq uency determined by the individual’ s
rompts for Restructuring ral Muscular honet- needs. In addition, the person with autism practices
ic Targets ( R M T). PROMPT is a physical-sen- strategies and skills – with guidance – at home and
sory approach to therapy in which a therapist uses in other settings including school. OT is provided by
touch and pressure to an individual’ s j aw, tongue and certified occupational therapists.

45
 100 DAY KIT

Certified physical therapists deliver physical therapy

beginning with an evaluation of a person’ s physical
abilities and developmental level. They then design
programs of activities that target areas of challenge.
Typically therapy sessions run a half hour to an hour
and include assisted movement, various forms of
exercise and the use of orthopedic eq uipment. The
needs of the child or adult receiving services should
determine the freq uency of these sessions.
Sensory integration (SI) therapy
Many children and adults with autism have challeng-
Social skills
es in processing sensory information such as move- Individuals with autism have a great deal of diffi-
ment, touch, smell, sight and sound. Sensory inte- culty with social interactions. In recent years, social
gration ( SI) therapy identifies such disruptions and skills training, in both one-on-one and peer group
uses a variety of techniq ues that improve how the settings, has become a very common treatment for
brain interprets and integrates this information. Oc- facing this particular challenge. Social skills taught
cupational therapy often includes sensory integration. during training sessions range from simple skills like
Other times it is delivered as a stand-alone therapy. eye contact to more difficult skills like inviting a peer
for a playdate. Studies have shown that this type of
Certified occupational and physical therapists provide intervention program can significantly improve social
sensory integration therapy. The therapist begins with competence and social skill development. Though
an individual evaluation to determine a person’ s sen- social skills training is not an official or certified form
sitivities. From this information, he or she plans an of therapy, professionals like social workers, speech
individualized program that matches sensory stimula- therapists and psychologists often focus largely on
tion with physical movement to improve how the brain improving social skills when treating both children
processes and organizes incoming information. As and adults with autism. In addition, parents, family
such, the therapy often includes eq uipment such as members and other caregivers can be taught effec-
swings, trampolines and slides. tive ways to help improve the social skills of their
Sensory integration therapy can allow a child or adult loved ones with autism both inside and outside the
with sensory integration difficulties to become more home on a regular basis.
“ available” for learning and social interactions. Family
members and teachers often find that its techniques Picture Exchange Communication
can help calm an affected child or adult, reinforce
positive behavior and help with transitions between
System (PECS)
activities. icture Exchange Communication System ( ECS)
is a learning system that allows children with little
Physical therapy (PT) or no verbal ability to communicate using pictures.
PECS can be used at home, in the classroom or in a
Many children and adults with autism have challeng-
variety of other settings. A therapist, teacher or parent
es with motor skills such as sitting, walking, running
helps the child to build a vocabulary and to articulate
and j umping. hysical therapy ( T) focuses on
desires, observations or feelings by using pictures
problems with movement that cause real-life limita-
consistently.
tions. In particular, physical therapy can improve poor
muscle tone, balance and coordination.

46
 100 DAY KIT

The PECS program starts by teaching the child how has potential to cause severe reactions in certain
to exchange a picture for an obj ect. Eventually, the individuals. When used appropriately, the GFCF
individual is shown how to distinguish between diet is safe and can help avoid these severe health
pictures and symbols and use them to form sentenc- problems.
es. Although PECS is based on visual tools, verbal
reinforcement is a maj or component and verbal The theory behind its use in autism is that if a person
communication is encouraged. Standard PECS is having GI responses to these products, the result-
pictures can be purchased as a part of a manual or ing inflammation may damage the lining of the intes-
pictures can be gathered from photos, newspapers, tine and as a result lead to absorption of molecules
magazines or other books. that are not normally absorbed by healthy intestines.
Some evidence suggests that these molecules or the
inflammation they cause can interact with the brain
Auditory Integration Training in ways that cause problems such as anxiety, mood
abnormalities, mental difficulties and perhaps worsen
Aud itory Integration Training ( AIT) , sometimes the behavioral symptoms of autism. That said, while
called sound therapy, is often used to treat children the GFCF diet has been used in the autism communi-
with difficulties in auditory processing or sound sensi- ty for a couple of decades, there is minimal evidence
tivity. Treatment with AIT involves the patient listening that it improves autism-related behaviors.
to electronically modified music through headphones
Families choosing a trial of dietary restriction
during multiple sessions. There are different methods
should make sure their child is receiving adeq uate
of AIT, including the Tomatis and Berard methods.
nutrition by consulting his or her pediatrician or a
While some individuals have reported improvements
nutrition specialist. Dairy products are the most
in auditory processing as a result of AIT, there are no
common source of calcium and Vitamin D for young
credible studies that demonstrate its effectiveness or
children in the U nited States. Many young children
support its use.
depend on dairy products for a balanced, regular
protein intake. Alternative sources of these nutrients
Gluten free, casein free diet (GFCF) req uire the substitution of other food and beverage
products, with attention given to the nutritional
Much has been said about the gluten free, casein
content. Substitution of gluten-free products req uires
free ( GFCF) diet and its use to help individuals with
attention to the overall fiber and vitamin content of
autism. Many families with children newly diagnosed
a child’ s diet. Vitamin supplements may have both
with autism wonder if it’ s something their child should
benefits and side effects. Consultation with a dietician
follow. The FCF diet was first developed for people
or physician is recommended for the healthy applica-
with celiac disease, a disorder that involves a severe
tion of a GFCF diet. This may be especially true for
reaction to gluten in the diet. Gluten is found in wheat
children who are picky eaters.
products such as bread and other bakery goods but
also in a wide variety of other food products. Casein
is a protein most associated with dairy products and

47
 100 DAY KIT

What about other medical Is There a Cure?

interventions?
Is recovery possible? You may have heard about
Right now you are itching to do everything possible to children who have recovered from autism. Although
help your child. Many parents in your position are ea- relatively rare, it is estimated that approximately 10%
ger to try new treatments, even those treatments that of children lose their diagnosis of autism. The factors
have not yet been scientifically proven to be effective. that predict which children lose their diagnosis are
Your hopes for a cure for your child may make you unknown. Children initially diagnosed with autism
more vulnerable to the lure of untested treatments. who lose their diagnosis often have residual difficul-
ties in the areas of hyperactivity, anxiety and
It is important to remember that just depressive symptoms. Symptom reduction from
as each child with autism is different, so autism is usually reported in connection with inten-
is each child’s response to treatments. sive early intervention, but it is unknown how
much or which type of intervention works best or
It may be helpful to collect information about a ther- whether the recovery can be fully credited to the
apy that you are interested in trying and speak with intervention. You may also hear about children who
your pediatrician, as well as your intervention team reach “best outcome” status, which means they
members, in order to discuss the potential risks/bene- score normally on tests for IQ, language, adaptive
fits and establish measurable outcomes and baseline functioning, school placement and personality, but
data. Parents of older children with autism can pro- have mild symptoms on some personality and
vide you with a history of therapies and biomedical diagnostic tests. Recent epidemiology studies
interventions that have been promised to be cures for estimate that approximately 60% of children with
autism over the years. Some of them may have been autism have IQ’s above 70 by age eight (70 is the
helpful to a small number of children. Upon further cut-off point for developmental delay). Presently,
study, none of them, so far, has turned out to be a there is no reliable way of predicting which children
cure for the vast majority. We do know that many will have the best outcomes. In the absence of a cure
children get better with intensive behavioral therapy. or even an accurate prognosis of your child’s future,
There is a large body of scientific evidence to support do not be afraid to believe in your child’s potential.
this theory. It makes sense to focus on getting your All children with autism will benefit from intervention.
child engaged in an intensive behavioral program All will make very significant, meaningful progress.
before looking at other interventions.

48
 100 DAY KIT

Making It Happen
How Do I Choose the
Right Intervention? Alleviate Stress by Actively ursuing the Right
Choosing a treatment path for your child may feel Interv ention” from Overcoming Autism
overwhelming. Remember to work closely with by Lynn Kern Koegel, PhD and Claire LaZebnik
your child’ s treatment team and explore all of
your options. The two articles that follow may It’s scary to have to question your own child’s poten-
provide helpful information for you as you choose tial , b u t th e b est w ay to rel ieve you r fears is to take
between methods of therapies for your child. action with productive interventions. The first step
is to b e informed. T al k to p eop l e you tru st - p arents
who’ve been there, experts in the field, doctors you
h ave a rel ationsh ip w ith and so on. T h ere are a l ot
of fly-by-night procedures that prey on distraught
p arents w h o w il l do anyth ing for th eir ch il d. M ake
sure that the interventions you’re using are scientifi-
cal l y sou nd and w el l docu mented. M ake su re th ey’ ve
b een tested w ith many ch il dren w ith au tism and th at
th ey’ ve b een rep l icated b y oth er exp erts and cl inics.
Al so, make su re you u nderstand th eir l imitations –
some interve ntions onl y w ork on a smal l nu mb er of
symp toms or on a smal l su b g rou p of ch il dren w ith
autism. If you’re going to spend time and money for
interve ntions, b e informed ab ou t th e deg ree and
ext ent of th e ch ang e th ey may b ring ab ou t.

49
 100 DAY KIT

nderstanding our Child s earning Style

Assembling Your Team
from Does My Child Have Autism? Y our child’ s team will consist of many different mem-
by Wendy Stone, PhD, and bers. They will help you to address all areas of your
Theresa Foy DiGeronimo, M.Ed child’ s life and assist you in making decisions about
your child’ s treatment, education, recreation and
F inding th e rig h t interve ntion p rog ram b eg ins w ith an health. Below is some helpful information on how to
u nderstanding of you r ch il d’ s l earning styl e – w h ich assemble this group of professionals.
is q u ite different from th e l earning styl e of oth er
ch il dren. Y ou p rob ab l y real ize th is as you ’ ve tried to
g et you r ch il d w ith au tism to w ave b ye- b ye u sing th e
Medical team
same teach ing strateg ies you u sed w ith you r oth er Y our child should be supported by a pediatrician
ch il dren – th at is, demonstrating th e action, p rovi d- who understands developmental issues and who
ing a ve rb al p romp t b y saying “ w ave b ye- b ye” and will serve as your child’ s primary care provider.
eve n movi ng h is or h er h and to demonstrate w h at to Depending on your child’ s needs, other medical team
do. B u t w h en th at ap p roach didn’ t seem to b e w ork - members may include a neurologist, geneticist,
ing , you p rob ab l y started to th ink th at you r ch il d w as developmental pediatrician, gastroenterologist,
b eing stu b b orn or u ncoop erative . After al l , you ’ re psychiatrist or nutritionist.
teach ing simp l e ski l l s u sing meth ods th at w orke d
ve ry w el l for you r oth er ch il dren. B u t th e real ity is Intensive intervention team
th at you r ch il d isn’ t b eing b ad; h e or sh e j u st h as a ABA, ESDM, Floortime, PRT, RDI, SCERTS,
different l earning styl e from you r oth er ch il dren. T h is TEACCH and B are all intensive interventions.
difference in l earning styl es isn’ t ap p arent onl y w h en Depending on the intensity of the primary interven-
you try to teach ch il dren w ith au tism; it’ s al so evi dent tion, there may be an intervention leader and several
in th e w ay th ey l earn ( or don’ t l earn) on th eir ow n. providers or therapists involved in providing the
T h ere are l ots of th ing s th at ch il dren w ith ou t au tism treatment as structured by the leader.
seem to l earn effortl essl y, w ith ou t b eing tau g h t, b u t
th at ch il dren w ith au tism don’ t p ick u p on as easil y. Related services team
F or exa mp l e, you ng ch il dren w ith ou t au tism some-
Speech and language therapy, occupational therapy,
h ow l earn, w ith ou t exp l icit teach ing , h ow to u se a
physical therapy, sensory integration therapy and
p ointing g estu re to l et you kn ow w h at th ey w ant or to
social skills instruction are all related services.
indicate w h ere th ey w ant you to l ook. T h ey l earn to
All therapists working with your child should be
follow your point or eye gaze to figure out what you’re
communicating freq uently and using a consistent
looking at or what you’re interested in. They figure
method of teaching.
ou t on th eir ow n h ow to u se eye contact and facial
exp ressions to conve y th eir feel ing s- as w el l as to
u nderstand th e meaning of you r facial exp ressions Hiring therapists
and tone of vo ice. S ocial - commu nicative b eh avi ors For parents hiring new therapists, you may want to
and ski l l s l ike th ese j u st don’ t come as natu ral l y to consider the candidate as you would any other j ob
you ng ch il dren w ith au tism and often need to b e applicant and handle the situation accordingly. Ask
tau g h t exp l icitl y. for resumes.

50
 100 DAY KIT

Specific hings to oo for on the esume: C heck clearances. Anyone working with your child
Past experience with children with autism will need to provide background clearances from the
approximately the same age as your child state you live in to establish that he or she does not
have a criminal record. If you have chosen a home-
Amount of experience the therapist has had based intervention program for your child, you will
probably be req uired to submit copies of those
Kinds of experience the therapist has had, clearances to the state, county or local agency
for example, whether he or she has worked providing services.
in a school setting or in a private program

Educational background

Membership in professional autism

organiza tions – if so, then he or she is “W hen to Be C oncerned Ab out a Therapist”
most likely going to conferences, thus from Overcoming Autism by Lynn Kern Koegel,
enhancing his or her skills in the profession PhD and Claire LaZebnik

T h ere’ s p l enty of evi dence sh ow ing th at ch il dren

Conducting interviews w ith au tism do b etter w h en p arents are active l y
Conduct a “ hands on” interview, during which the invo l ve d in th e interve ntion and w h en p rog rams are
potential therapist works with your child to imple- coordinated. F ind p rog rams th at encou rag e you to b e
ment a skill acq uisition program. It is important to see invo l ve d – you sh ou l d b e l earning al l th e p rocedu res
how the potential therapist takes direction and to see and coordinating you r ch il d’ s p rog ram across eve ry
how flexible he or she is about changing approaches envi ronment. Y ou can’ t do th at if you ’ re b eing sh u t
in his or her teaching. Y ou will want a therapist to out. If a treatment provider tells you that you can’t
potentially be open to new ideas in terms of teaching w atch th e sessions or th at you r ch il d does b etter
approaches. It’ s a good idea to have him or her bring when you’re not there, this is a RED FLAG. It may
video of a therapy session conducted with another b e reasonab l e for a th erap ist to req u est a few
child. This offers yet another view of his or her sessions al one to b ond w ith th e ch il d, b u t more th an
teaching skills. If possible, observe the therapist th at j u st doesn’ t make sense and th e th erap ist needs
working with another child. to commu nicate fu l l y w ith you so th at you kn ow
exactly what’s going on at all times. If a clinician tells
C heck references. Be sure to talk to previous you th at sh e’ s not docu menting any typ e of ch ang es,
supervisors and other parents for whom the therapist b e concerned – th e onl y w ay to eva l u ate w h eth er
has worked. They are often good sources for a treatment p rog ram is w orki ng is to anal yze th e
finding additional therapists. ch ang es you r ch il d is maki ng . Al so b e w ary of any
C onsid er a prob ation period . The therapist should th erap ist w h o says th at h e’ s w orki ng on th e
be hired for a probation period, during which sessions “parent-child bond,” and that fixing your relationship
are videotaped or observed directly until you and/ or with your child will improve her behavior. In other
the home coordinator feel comfortable with the thera- w ords, if you r th erap ist is excl u ding you , b l aming you
pist and confident in his or her abilities. or u sing tech niq u es th at do not h ave measu rab l e
ou tcomes, you sh ou l d consider l ooki ng for anoth er
th erap ist or ag ency.

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 100 DAY KIT

Managing your team

Participate in training. Be part of the team. Y our
participation in team training is vital so that you can “M aking Therapies Work for the Entire F amily”
increase your skills to successfully parent your child from Overcoming Autism by Lynn Kern Koegel,
and understand the goals and techniq ues of his or PhD and Claire LaZebnik
her program. Knowing the techniq ues and obj ectives
of your child’ s intervention program will allow you to Al w ays b e su re you sel ect interve ntionists w h o w il l
closely monitor his or her progress and guide and vi ew th e famil y as teammates and w il l incl u de you in
evaluate the members of your team. Intensive th e determination of targ et g oal s – you r ch il d needs
intervention programs often start with a one or two to learn skills that will help the family function, fit into
day training course where individual therapists are you r l ifestyl e and b e comp atib l e w ith you r cu l tu ral and
trained by the primary intervention leader. rel ig iou s va l u es. F or exa mp l e, a cl inician may feel
th at it’ s imp ortant to w ork on answ ering th e p h one,
w h il e th e famil y may feel th at toil et training is a mu ch
Establishing team communication more p ressing and immediate g oal . B oth g oal s may
There are two important ways your team will com- w el l b e va l id, b u t th e famil y needs to h ave a say in
municate. One is through a notebook in which each p rioritizi ng th em. S imil arl y, stu dies sh ow th at famil ies
therapist records information after his or her session w h o are req u ired to imp l ement dril l typ e interve ntions
with your child. Each therapist reads the information h ave g reater stress th an w h en l ess rig id interve ntions
recorded since the previous session before the next are incorp orated into dail y famil y rou tines. H ow w el l
session with your child. Parents and supervisors th e famil y fu nctions as a w h ol e is j u st as imp ortant
can add information to the notebook as needed. The as h ow w el l th e ch il d w ith sp ecial needs is doing and
other way is through team meetings. Team meetings it’ s you r resp onsib il ity to w ork tow ard b oth ki nds of
are often held at the home of the child, especially su ccess.
in the case of intervention programs that are home-
based. These meetings should include as many
members of your team as possible. This will ensure
that your therapists are up to date on every aspect of
the program and that they are all working with your There are also currently apps and other technol-
child in consistent ways. At team meetings, you will ogy resources out there that help parents
discuss what is working, as well as areas in which manage their team and keep ev eryone informed
there have not been progress, so that you can and connected ne resource is My Autism Team
determine whether to make changes and what those ( myautismteam.com) , a social network that
changes should be. Teams usually meet once a allows all professionals and family memb ers
month, but may meet more or less often as needed. inv olv ed in the care of an ind iv id ual with autism
Many team meetings include time for therapists to to communicate and prov id e upd ates. Search the
observe each other in action with your child and Autism Speaks Autism Apps d atab ase at
receive feedback on their techniq ues. autismspeaks.org/ autism-apps for similar tools!

52
 100 DAY KIT

Technology and Autism

Technology such as iPads, computers and smart
phones have become valuable tools in the treat-
ment and daily lives of individuals with autism. These
devices can assist in areas ranging from behavior
tracking to communication and more. There are many
options for how to use technology to benefit each
individual. Discuss the use of technology for your
child with your treatment team.

The Autism Speaks Autism Apps database contains

hundreds of helpful apps divided by age, platform AutismTrack™
and category. Categories include behavioral Autism Track is a portable, customizable data track-
intervention, communication, social skills, education- ing tool that empowers caregivers of those with
al, functional skills and more. Search the database autism to easily track interventions, behaviors and
at autismspeaks.org/autism-apps. Many of these symptoms. Checkboxes allow daily recording of any
apps have been found to help individuals with autism therapy, medicine or diet.
make great strides in their communication skills and handholdadaptive.com/AutismTrack.html
abilities to express themselves.

Additionally, technology has been very helpful in You can find additional information on technol-
allowing families of individuals with autism and their ogy and the many ways it can assist individuals
team members to track the child’s progress and with autism at
remain up to date on his or her schedule, improve- autismspeaks.org/family-services/technology.
ments, strengths and challenges following
Search the Autism Speaks Apps database for
treatments and interventions. Examples include:
helpful apps for your child at
My Medical App autismspeaks.org/autism-apps.
This app stores complete medical histories for as
many people as you wish, helps you keep critical and
hard-to-remember information on hand all the time Autism and Wandering
and allows you to track and chart tests results and
Safety is a critical part of all of our lives, whether
vital signs and send the records to your doctors with
we are at home or out in the community, alone or
the click of a button.
with loved ones. Being aware of our surroundings
mymedicalapp.com
and taking precautions to stay safe is even more
TherapyConnectApp important for individuals with autism and their fami-
This app was developed by a team of speech- lies. Wandering is an especially prominent issue
language pathologists and behavioral consultants in the autism community. A 2012 study from the
dedicated to the service of children with disabilities Interactive Autism Network confirmed that nearly
including autism. It is a tool for both therapists/service half of all children with autism have attempted to
providers and families who wish to maintain consis- wander or bolt from a safe, supervised place. Given
tent treatment plans that work for their children the frequency of this problem, here are some tips
by allowing the user to monitor the child or client’s that have been adapted from Autism Wandering
treatment plan from any iPad. Awareness Alerts Response Education Coalition
truetherapydata.com (AWAARE) on how to prevent wandering:

53
 100 DAY KIT

1 . Secure Y our H ome Autism Speaks has a grant program that awards
Consider contacting a professional locksmith, funding to organizations providing scholarships for
security company or home improvement professional swimming and water safety lessons for financially
to promote safety and prevention in your home. disadvantaged individuals with autism. Learn more
ou may find it is necessary to prevent your loved at autismspeaks.org/ family-serv ices/ grants/
one from slipping away unnoticed by installing secure swimming.
dead bolt locks that req uire keys on both sides, a
5 . Alert Y our N eighb ors
home security alarm system, inexpensive battery-
It is recommended that caregivers plan a brief visit
operated alarms on doors, hook and eye locks on
with neighbors to introduce their loved one or pro-
all doors above your child’ s reach, a fence around
vide a photograph. Knowing your neighbors can help
your yard, printable STOP SIGNS on doors,
reduce the risks associated with wandering.
windows and other exits, etc.
6 . Alert F irst Respond ers
2 . C onsid er a L ocating D ev ice
Providing first responders with key information
Check with local law enforcement for Proj ect
before an incident occurs may improve response.
Lifesaver or Lo Jack SafetyNet services. These
Informational handouts should include all pertinent
locating devices are worn on the wrist or ankle and
information and be copied and carried with care-
locate the individual through radio freq uency.
givers at all times. Circulate the handout to family,
Various GPS systems are also available.
neighbors, friends and co-workers, as well as first
3 . C onsid er an ID Bracelet responders. Always make sure to work with your
Medical ID bracelets will include your name, child’ s team to express any concerns about safety
telephone number and other important information. issues, so that you can work together on a safety
They may also state that your child has autism and plan best suited for your loved one. More inform-
is nonverbal if applicable. If your child will not wear ation about safety and wandering can be found at:
a bracelet or necklace, consider a temporary tattoo awaare.org, autismspeaks.org/ safety and
with your contact information. autismspeaks.org/ wand ering-resources.

4 . Teach Y our C hild to Swim

The leading cause of death of individuals with autism
who wander is drowning. It is critical to teach your
child both to swim and to understand the importance
of water safety. Swimming lessons for children with
special needs are available at many Y MCA locations.
The final lesson should be with clothes on. Remem-
ber that teaching your child how to swim does not
mean your child is safe in water. If you own a pool,
fence it. If neighbors have pools, let them know of
these safety precautions and your child’ s tendency
to wander. Remove all toys or items of interest from
the pool when not in use.

54
 100 DAY KIT

Conclusion
The time after an autism diagnosis is likely a difficult There are a multitude of resources and tool kits on
time for you. It is important to remember that you are the Autism Speaks website to help you navigate this
not alone. Others have gone down this road before j ourney with your child. The 1 0 0 Day Kit is only the
you. Y ou are stronger than you think. Y ou will learn beginning. In addition, the Autism Response Team
how to overcome challenges and best meet your is available to answer your q uestions and connect
child’ s needs so that he or she can live as full and you with resources. Please call 8 8 8 -2 8 8 -4 7 6 2
independent of a life as possible. Y ou will also begin ( en Españ ol 8 8 8 -7 7 2 -9 0 5 0 ) or email
to experience the world in a new way; your priorities familyserv ices@ autismspeaks.org and they
may shift and you will meet some incredible people are happy to help you at every step of the way.
who are dedicated to helping those with autism to
succeed. Keep in mind that great strides are be- lease do not hesitate to reach out
ing made every day in the field of autism research,
including many studies looking into new treatments
and interventions.

Your feedback is important to us. To share your comments on the kit -

What was helpful? What additional information could be included?
please email your comments to familyservices@ AutismSpeaks. org
with the word “f eedback” in the subj ect line.

55
A Week by Week Plan for the
Next 100 Days
Getting Organized
The first thing you will need to do is get yourself Therapy
organized. ou may already find you’ve accumulated A section for speech, occupation therapy, SI and
a lot of paperwork about your child and about autism so on (multiple or sub sections may be necessary)
in general. Organizing the information and records
that you collect for your child is an important part of Individualized Family Service Plan (IFSP)
managing his or her care and progress. If you set A section for your child’s IFSP and related
up a simple system, things will be much easier over documents (for children under three years of age)
time. ou may need to stop by an office supply store
to pick up a binder, dividers, some spiral notebooks, Individualized Education Plan (IEP)
loose leaf paper or legal pads and pens. A section for your child’s IEP and related
documents (for children age three and older)

The Binders We’ve included a sample contact list, phone log and
weekly planner in this kit so you can copy and use
Many parents find that binders are a great tool for
them as needed. ou may also want to summarize
keeping the mountain of paperwork down to a more
your child’s progress in therapy and at school with
manageable, size and for sharing information.
cover sheets in each section sample summary
ou may want to organize by subject or by year.
sheets are also in the Resources section.
In either case, here are some of the subjects that
you are likely to want to have at your fingertips

Contacts Using Your Weekly Planner

A section for service providers, caregivers and
others The timeframe and action items will vary depending
on your child’s symptoms, age, where you live and
Schedules what you have already accomplished. Even if you are
A section for therapy times, program start and very on top of this, it may take a while to be able to
end dates, deadlines access additional evaluations and the services that
your child needs.
Diagnosis
A section for medical documents and any
prescriptions
Start Now
56
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
schedule the remainder of necessary evaluations child is in school, you may also want to find out if
(see Getting Services below). your district 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
you’ll start with your local school district. Call to on 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
and time consuming process, but may be useful in Start to read material, join online groups and
further determining the services that are needed. ask questions that will help you understand the
treatment 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. Don’t hesitate to put your name on
multiple lists so you can get the earliest appoint-
ment possible. Some of the professionals who pro-
vide services through Early Intervention or Special
Education may take a specified number of days to
complete evaluations or begin services.

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, in the future, you will be able to
recognize where your child was at that point in
time. Make a new recording every three months
at home, in therapy sessions, wherever. These
video “snapshots” can be used to track your
child’s progress and help show what effect a
particular therapy or intervention may have had.
Label the tapes or discs with your child’s name
and the dates they were recorded.

57
Week 3 Week 4
Getting Services (Continue to Follow Up) Build Your Team
Follow up on services. Continue to check status on By this time, your child’s team of therapists, educa-
waiting lists and available programs. Keep using tors and caregivers is probably taking shape.
your phone log to record the dates you contacted Continue to look for service providers and observe
service providers and track when you may need to as many therapy sessions as possible to identify
make another call. new recruits for your child’s team. Talk to other
parents who may know of therapists with time
available for your child. You don’t have to wait until
Play with Your Child every member of the team is in place before begin-
Play with your child. Play is an important part of any ning therapy.
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 Create a Safety Plan
the University of Washington’s Autism Center that You may already have had to adapt your home
illustrates how to include useful play activities, to because of your child’s behaviors or needs. You’ve
help your child learn. probably already read the section of this kit called
Create a Safety Plan. If not, carve out some time to
Set Aside Sibling Time survey your home for possible problems and begin
contacting local safety personnel to plan ahead to
The siblings of children with autism are affected
ensure your child’s safety.
by the diagnosis as well. Consider spending time
talking together about their feelings. Start a “Joy
Museum” together of happy memories. Talking Plan Some Time Away
about these times can help them remember that Plan some time away from your child. You will do
their lives involve a lot more than autism. a better job helping your family if you take care of
yourself. Even if it’s just going for a walk alone, you
Play with Your Child are going to need a break so that you can come
back with a clear head.
Ideas for purposeful play are included at the end
of this section of your tool kit.

58
Week 5 Week 6
Continue Building Your Team Continue to Research Treatment
See Week 4.
Options
Continue to research treatment options. If possible,
Review Your Insurance go to a workshop or look for additional information
Investigate your insurance coverage to see what, if online.
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
Connect with Other Parents
covered by your child’s IFSP or IEP. You may need Go to a support group or spend some time with a
to create a separate binder to keep track of insurance parent who can help you along your journey. You’ll
claims. Document everything. learn a lot and being around people who know what
you are going through will help you stay strong.

Get to Know Your Child’s Legal Rights

Familiarize yourself with your child’s rights. There is a
Find Childcare
wealth of information available. You may find out your Get a babysitter. Look into qualified babysitting
child is entitled to services you weren’t aware of or services and respite care. Don’t wait until you’re
hadn’t considered. desperate—find someone you’re comfortable with
and plan a night out. If you already have a great
babysitter, invite her or him to spend some time with
Do Something for You you and your child so he or she can adjust to the
You’ve made it through a month, and it may have new techniques your family is using at home.
been one of the most challenging months of your life.
Remember to take care of yourself. Remember who
you were before the diagnosis. Spend some time
Build Your Team
on an activity that you enjoy. You will find it helps Continue to follow up on services and research any
you face the challenges ahead. There are probably new possible providers.
friends and family in your life who would love to help,
but may not know what you need. Don’t be afraid to Schedule a Team Meeting
ask for help.
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.

59
Week 7 Week 8
Become Competent in the Intervention Check Your Progress
Methods You Have Chosen for Your Child Look back through this action item list. Is there
anything you started that needs follow up?
Take advantage of parent training. Therapists often
provide parent training that will help bring the
methods used at therapy into your home and help Investigate Recreational Activities for
your child’s progress. Your Child
Add a recreational activity, such as gymnastics or
Create a Schedule swimming, to broaden your child’s development.
Having a written weekly schedule for your child’s
therapy will help you see if you’ve scheduled your Plan More Sibling Time
time as well. It will also help you plan for the other
Your typically-developing children will no doubt be
members of your household.
richer for having a sibling with autism. But maintain-
ing as much normalcy as possible will help them
Continue Learning about reach their potential too.
Treatments and Services
Consult the Autism Speaks Resource Guide for Make Contact with Friends and Family
contacts in your area. Stay connected. Make contact with your friends and
family and participate in community events. Keep-
Spend Some Time Organizing ing up your social life will help you safeguard against
feelings of isolation.
Your Paperwork
Organize any paperwork that may have piled up. Spend Time Alone with Your Spouse
Try to eliminate any materials you won’t need. Plan a relaxing and fun activity with your partner.
After all, you’ve just made it through month two.

60
Week 9 Week 10
Round Out Your Team Schedule a Team Meeting
Continue to evaluate service providers and It’s team meeting time again. Schedule a meeting
therapists. to discuss progress and strategies. Stay involved
with your team by continuing to attend as many
sessions as possible.
Use the Internet
Get e-savvy. Spend time researching online
resources that will keep you up-to-date. Add useful Rally the Troops
websites to your favorites, register for e-newsletters Encourage your team. Let them know you appre-
and join list servs where parents and professionals ciate everything they are doing for your child.
share information.
Plan a Family Outing
Continue to Connect with Other Parents Schedule an activity designed to include your
Stay active with a support group or, if possible, child with autism and utilize strategies you’ve
socialize with other parents of children with autism. picked up from therapy. Ask your child’s therapist
Being around other adults who understand what to help you with specific strategies to make the
your family is going through will help you stay strong. outing a success.

Check in on Your Child’s Sessions Brush Up on the Law

Continue to observe your child’s therapy sessions. Continue to learn about your child’s legal rights.
Your child should be getting used to his or her
therapy routine at this point.

Play with Your Child

Play with your child. Continue to use the strategies
you’ve learned from parent training sessions and
other resources.

61
Week 11 Week 13
Check Your Child’s Progress Hold a Team Meeting
Look for progress. Hopefully, your child has been Check on progress again. You should continue to
through a consistent month of therapy at this point. see progress after at least six weeks of consistent
Review your binder and videos to see if you notice therapy. If there has been little or no progress, call
improvements. Continue to attend sessions too. another team meeting to brainstorm and make
Take notes on what you see. Keep a copy in your adjustments to your child’s routine.
binder and bring them to your next team meeting.

Continue Learning
Dig Deeper into Treatment Options Keep learning about autism. Books, seminars,
Set aside time to do some research and reading on movies, websites – all sorts of sources can help
additional treatments and therapies. Make notes and you deepen your understanding of autism and
copy useful information to include in your binder. your child. See the Suggested Reading List in this
kit for ideas.

Week 12
Do Something for You
Enjoy some “me” time. Do something nice for
yourself – 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.

Continue Connecting with

Other Parents
Keep going to support groups. Parents are amaz-
ing resources and will help provide emotional and
practical support. Look into additional groups in
your area if you don’t feel like you’ve found the
right one for you.

Sign Up for More Training

Using the methods you are learning from your
child’s therapists will help create a productive
environment at home so your child will have the
best chance of obtaining his or her goals.

62
 100 DAY KIT

Ideas for Purposeful Play

From the University of Washington Autism Center Parent Care book
Imitation: Obj ect and Motor
Sing finger play songs such as the Itsy Bitsy Spider, 5 Little Monkeys, oom 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)
rocery 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, “ ive 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)

Req uesting
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.

63
 100 DAY KIT

Comparing Treatment Methods & Providers

Adapted from: Does My Child Have Autism? By Wendy L. Stone, Ph.D. with Theresa Foy DiGeronimo  

ABOUT THE PROGRAM

Name of Program/Provider
Method
Location
Phone Number
Email
Website
Hours per Week
Cost
Reimbursement
Recommended by

PROGRAM CONTENT
What are the developmental areas
of focus? (language, communication,
peer play, social interactions, behavior,
pre-academic skills, parent training,
etc.)
How specific are the goals
identified for each child?

How are behaviors and skills

prioritized?

What kind of teaching is used?

How are behaviors 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?

64
 100 DAY KIT

How often will you assess progress

and 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

skill 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?

65
 100 DAY KIT

PROFESSIONAL INVOLVEMENT
Who will be providing the direct
intervention with my child?

What type of training does he/she

have?

Who will be supervising him/her

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 how to work with

my child? How?

What skills will you teach me? (Ask

for examples.)

COMPATIBILITY 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.)

66
 Service Provider Planner
Requested #
Agency & Requested
Phone # Date Called of Sessions Availability Status Follow-Up Other Info
Contact Services and Duration
100 DAY KIT

67
 Service Provider Planner
Requested #
Agency & Phone # Date Called Requested of Sessions Availability Status Follow-Up Other Info
Contact Services and Duration
100 DAY KIT

68
 100 DAY KIT

CONTACTS: MEDICAL
Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

 
69
 100 DAY KIT
 

CONTACTS: THERAPY
Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

 
70
 100 DAY KIT
 

CONTACTS: SUPPORT
Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

 
71
 100 DAY KIT
 

CONTACTS: OTHER
Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

Specialty Specialty

Name of Name of
Contact Contact
Name of Name of
Practice Practice
Phone Number Phone Number

Address Address

Email Address/ Email Address/

Website Website

 
72
 100 DAY KIT

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

73
 100 DAY KIT

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

74
 100 DAY KIT

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

75
 ASSESSMENT TRACKING Type of Therapy _______________
Test Change in Change in Age
Date Evaluator Standard Score Age Equivalent
Administered Standard Score Equivalent
100 DAY KIT

76
 ASSESSMENT TRACKING Type of Therapy _______________
Test Change in Change in Age
Date Evaluator Standard Score Age Equivalent
Administered Standard Score Equivalent
100 DAY KIT

77
 100 DAY KIT

GOAL TRACKING: IFSP GOALS

Date Comments Goals Goals Goals Just Goals Not
Date Comments Goals
Mastered Making Goals Just
Started Goals Not
Started
Mastered Progress Started Started

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GOAL TRACKING: IFSP GOALS

Goals
Date Comments Goals Making Goals Just Goals Not
Mastered Progress Started Started

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 Safety Log
In the chart below, include any wandering incidents, attempts or interactions that put your child at risk. Keep track of what
was going on before, during and after the incident to try and determine antecedents, triggers and possible prevention
methods. Ask your child’s behavioral team, teachers and other caregivers to complete the log as needed.

Date Location Description Possible Triggers Changes Noted Suggested Next Steps
100 DAY KIT

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Glossary
Note: Visit the Autism Speaks Video Glossary at
AutismSpeaks.org/ what-autism/ v id eo-glossary
to see video of the items in blue.

A
Ab sence Seizu re, see S eizu res.

Americans with D isab ilities Act ( AD A) is the U S law that ensures rights of persons with
disabilities with regard to employment and other issues.

Angelman Synd rome is a genetic disorder causing developmental delays and neurological
problems, often accompanied by seizures. Children often display hyperactivity, small head
size, sleep disorders and movement and balance disorders.

Anticonv ulsant is a type of drug used to prevent or stop seizures or convulsions; also
called antiepileptic.

Anx iety D isord er is a disorder that affects an estimated 3 0 % of individuals with autism and
includes social phobia, separation anxiety, panic disorder and specific phobias. An individual
suffering from anxiety may experience strong internal sensations of tension such as a racing
heart, muscular tensions and stomachache.

Applied Behav ior Analysis ( ABA) is a style of teaching using series of trials to shape
desired behavior or response. Skills are broken into small components and taught to child
through a system of reinforcement.

Asperger Synd rome is a developmental disorder on the Autism spectrum defined by impair-
ments in communication and social development and by repetitive interests and behaviors,
without a significant delay in language and cognitive development. The diagnosis is no longer
used in DSM5 , but DSM5 indicates that individuals with a “ well-established diagnosis” of
these conditions “ should be given the diagnosis of autism spectrum disorder.”

Attention Deficit Hyperactivity Disorder (ADHD) is a disorder that affects approximately

1 in 5 children with autism. Symptoms include chronic problems with inattention, impulsivity
and hyperactivity.

Aud iologist is a professional who diagnoses and treats individuals with hearing loss or
balance problems.

Aud itory Integration Training, or sound therapy, is used to treat children with difficulties in
auditory processing or sound sensitivity and involves the individual listening to electronically
modified music through headphones during multiple sessions.

Autism D iagnostic Ob serv ation Sched ule ( AD OS) is a test considered to be current gold
standard for diagnosing ASD and, along with information from parents, should be incorpo-
rated into a child’ s evaluation.

Autism Speaks Insurance L ink is a tool to help families in the autism community determine
whether an individual is entitled to coverage for the treatment of autism under their health
insurance plan.
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Autism Speaks Tod d ler Treatment N etwork ( TTN ) supports a consortium of research sites
studying behavioral interventions appropriate for children under 1 8 months of age.

Autism Spectrum D isord er and autism are both general terms for a group of complex disor-
ders of brain development. These disorders are characterized, in varying degrees, by difficul-
ties in social interaction, verbal and nonverbal communication and repetitive behaviors. With
the May 2 0 1 3 publication of the DSM-5 diagnostic manual, all autism disorders were merged
into one umbrella diagnosis of ASD.
B
C
C asein is protein found in milk, used in forming the basis of cheese and as a food additive.

C eliac D isease is a disease in which there is an immunological reaction within the inner
lining of the small intestine to gluten, causing inflammation that destroys the lining and
reduces the absorption of dietary nutrients. It can lead to symptoms of nutritional, vitamin
and mineral deficiencies.

C hild hood D isintegrativ e D isord er is a disorder in which development begins normally in

all areas, physical and mental. At some point between 2 and 1 0 years of age, the child loses
previously developed skills. The child may lose social and language skills and other functions,
including bowel and bladder control. The diagnosis is no longer used in DSM5, but DSM5
indicates that individuals with a “ well-established diagnosis” of these conditions “ should be
given the diagnosis of autism spectrum disorder.”

C hronic C onstipation is an ongoing condition of having fewer than three bowel movements
per week.

C ognitiv e Skills are any mental skills that are used in the process of acq uiring knowledge;
these skills include reasoning, perception and j udgment.

C olitis is inflammation of the large intestine.

C omplete Blood C ount ( C BC ) is a lab test reporting number of white blood cells, red blood
cells, platelets, hemoglobin, hematocrit and other values reflecting overall blood health.

C ompulsions are deliberate repetitive behaviors that follow specific rules, such as pertaining
to cleaning, checking or counting. In young children, restricted patterns of interest may
be early sign of compulsions.

C omputed Ax ial Tomography ( C T) examines organs by scanning with X rays and using
computer to construct series of cross-sectional scans. Called “CAT” scan.
D
D eclarativ e L anguage is used to communicate what the mind is producing. It is what is most
common in conversation, whereas Imperative Language is used to ask q uestions, make
commands or give instructions.

D ev elopmental D isord er refers to several disorders that affect normal development. May
affect single area of development (specific developmental disorders) or several (pervasive
developmental disorders).

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D ev elopmental Ind iv id ual D ifference Relationship ( D IR) is a type of therapy, known as

Floortime, that seeks to move the child toward increasingly complex interactions through
mutually shared engagement.

D ev elopmental M ilestones are skills or behaviors that most children can do by a certain age
that enable the monitoring of learning, behavior and development.

D ev elopmental P ed iatrician is a medical doctor who is board-accredited and has received

sub-specialty training in developmental-behavioral pediatrics.

D iagnostic and Statistical M anual of M ental D isord ers ( D SM -5 ) is the official system for
classification of psychological and psychiatric disorders published by the American Psychiatric
Association in 2 0 1 3 that, among other changes, established new criteria for an autism diag-
nosis, eliminated the previously separate subcategories on the autism spectrum, including
Asperger Syndrome, PDD-NOS, Childhood Disintegrative Disorder and Autistic Disorder and
added a new category called Social Communication Disorder (SCD).

D iscrete Trial Training ( D TT) is a techniq ue incorporating principles of ABA, including positive
reinforcement used to teach behaviors in one-to-one setting. Concepts are broken down into
small parts.

E
Early Autism Risk L ongitud inal Inv estigation ( EARL I) is a network of research sites that
enrolls and follows a large group of mothers of children with autism at the start of another
pregnancy and documents the newborn child’ s development through three years of age.

Early Interv ention ( EI) is a state-funded program designed to identify and treat developmental
problems or other disabilities as early as possible. Eligibility for EI is from birth to three years
of age.

Early Start D env er M od el ( ESD M ) is a comprehensive behavioral early intervention approach

for children with autism, ages 1 2 to 4 8 months, that uses a developmental curriculum that
defines the skills to be taught at any given time and a set of teaching procedures used to
deliver this content.

Echolalia is repeating words or phrases heard previously, either immediately after hearing
word or phrase or much later. Delayed echolalia occurs days or weeks later. Functional
echolalia is using q uoted phrase in a way that has shared meaning, for example, saying
“ carry you” to ask to be carried.

Electroencephalogram ( EEG ) is a test using electrodes on scalp to record electrical brain

activity. For diagnoses of seizure disorder or abnormal brain wave patterns.

Epilepsy (seizure disorder) is a pattern of repeated seizures, causes include head injury, brain
tumor, lead poisoning, genetic and infectious illnesses. Cause is unknown in 5 0 % of cases.

Esophagitis is inflammation of the esophagus, the soft tube-like portion of the digestive tract
connecting the pharynx with the stomach.

Ex pressiv e L ab eling is the communication of a name for an obj ect or person, see
expressive language.

Ex pressiv e L anguage is communication of intentions, desires or ideas to others, through

speech or printed words and includes gestures, signing, communication board and other
forms of expression.
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Ex tend ed School Y ear ( ESY ) Serv ices are provided during breaks from school, such as
during summer vacation, for students who experience substantial regression in skills during
school vacations.

F
F ree Appropriate P ub lic Ed ucation ( F AP E) means that education must be provided to all
children ages three to twenty-one at public expense.

F loortime is a developmental intervention for children with autism involving meeting a child
at his current developmental level and building upon a particular set of strengths.

F ragile X synd rome is a genetic disorder that shares many of the characteristics of autism.
Individuals may be tested for Fragile X .

G
G astritis is inflammation of the stomach.

G astroenterologist is a doctor specializing in diagnosis and treatment of disorders of Gl tract,

including esophagus, stomach, small intestine, large intestine, pancreas, liver, gallbladder and
biliary system.

Gastroesophageal Reflux is the return of stomach contents back up into the esophagus
which freq uently causes heartburn due to irritation of the esophagus by stomach acid.

G astrointestinal pertains to the digestive tract, including the mouth, throat, esophagus,
stomach, small intestine, large intestine and rectum.

G eneticist refers to a medical doctor who specializes in genetic problems. Genes are the unit
in the chromosome that contain the blueprint for the transmission of inherited characteristics.

G estures are hand and head movements, used to signal to someone else, such as a give,
reach, wave, point or head shake. They convey information or express emotions without the
use of words.

G lob al D ev elopmental D elay is diagnosis in children younger than 5 , characterized by delay

in two or more developmental domains, sometimes associated with mental retardation.

G luten is a protein present in wheat, rye and barley.

G rand mal seizu re, see Seizures.

H
High Risk Baby Siblings Research Consortium (BSRC) is a j oint venture between Autism
Speaks and the National Institute of Child Health and Human Development that is focused
on making discoveries that will help researchers develop new ways to treat or even prevent
debilitating symptoms by intervening at an early age.

Hyperlexia is the ability to read at an early age. To be hyperlexic, a child does not need to
understand what he or she is reading.

Hyperresponsiveness, h yp ersensitivi ty, see S ensory D efensive ness.

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Hyporesponsiveness, hyposensitivity, is abnormal insensitivity to sensory input. Could be

exhibited by a child who appears to be deaf, whose hearing is normal, is under reactive to
sensory input, may have a high tolerance to pain, may be clumsy, sensation seeking and may
act aggressively.

I
Incid ental Teaching teaches a child new skills while in their home or community, in natural
context or “ in the moment,” to help make sense of what they learn during formal instruction
and generalize new skills.

Ind iv id ual F amily Serv ice P lan ( IF SP ) is developed by a multidisciplinary team including
family as primary participant. Describes child’ s level of development in all areas; family’ s
resources, priorities and concerns, services to be received and the freq uency, intensity and
method of delivery. Must state natural environments in which services will occur.

Ind iv id ualize d Ed ucation P lan ( IEP ) identifies student’s specific learning expectations,
how school will address them with appropriate services and methods to review progress.
For students 1 4 and older, must contain plan to transition to postsecondary education or the
workplace or to help the student live as independently as possible in the community.

Ind iv id uals with D isab ilities Ed ucation Act ( ID EA) is the U S law mandating the “ Free and
Public Education” of all persons with disabilities between ages 3 and 21.

Inclusion involves educating all children in regular classrooms, regardless of degree or

severity of disability. Effective inclusion takes place with planned system of training and sup-
ports; involves collaboration of multidisciplinary team including regular and special educators.

J
J oint Attention is the process of sharing one’ s experience of observing an obj ect or event,
by following gaze or pointing gestures. Critical for social development, language acq uisition,
cognitive development. Impairment in joint attention is a core deficit of ASD.

K
L
L east Restrictiv e Env ironment ( L RE) is setting that least restricts opportunities for child
with disabilities to be with peers without disabilities. The law mandates that every child with a
disability be educated in a Least Restrictive Environment.

M
M agnetic Resonance Imaging ( M RI) is a diagnostic techniq ue using powerful electromag-
nets, radio frequency waves and a computer to produce well defined images of the body’s
internal structures.

M ainstreaming is where students are expected to participate in existing regular ed classes,

whereas in an inclusive program classes are designed for all students. May be gradual, partial
or part-time process ( e.g., student may attend separate classes within regular school or
participate in regular gym and lunch only).
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M elatonin is a hormone produced by pineal gland, involved in regulating sleeping and

waking cycles. Sometimes used for chronic insomnia. Consult your child’ s physician before
giving melatonin; it is not recommended for all patients with sleep problems.

Modified Checklist of Autism in Toddlers (MCHAT) is a screening tool for identifying young
children who may be referred to specialist for further evaluation and possible Autism Spectrum
Disorder diagnosis.

Motor deficits are physical skills that a person cannot perform or has difficulty performing.

M otor function (or motor skills) is the ability to move and control movements.

N
N eurologist refers to a doctor specializing in medical problems associated with the nervous
system, specifically the brain and spinal cord.

N onv erb al Behav iors are things people do to convey information or express emotions
without words, including eye gaze, facial expressions, body postures and gestures.

O
Ob sessions are persistent and intrusive repetitive thoughts. Preoccupations with specific
kinds of obj ects or actions may be an early sign of obsessions.

Ob structiv e Sleep Apnea breathing disorder interrupting breathing during sleep when air flow
cannot flow through the nose or mouth although efforts to breathe continue. Throat collapses
during sleep causing snorting and gasping for breath. May cause daytime sleepiness. May
increase risk of hypertension and heart problems.

Occupational Therapy assists development of fine motor skills that aid in daily living. May
focus on sensory issues, coordination of movement, balance and self-help skills such as
dressing, eating with a fork, grooming, etc. May address visual perception and hand-eye
coordination.

Occupational Therapist helps minimize impact of disability on independence in daily living

by adapting child’ s environment and teaching sub-skills of the missing developmental
components.

Operant C ond itioning is the modification of behavior through positive and/or negative
reinforcement.

P
P ersev eration is repetitive movement or speech or sticking to one idea or task, that has a
compulsive q uality to it.

P erv asiv e D ev elopmental D isord ers ( P D D ) is group of conditions involving delays in de-
velopment of many basic skills, including ability to socialize with others, to communicate and
use imagination. Includes Autism, Asperger Syndrome, Childhood Disintegrative Disorder,
Rett Syndrome and Pervasive Developmental Disorder - Not Otherwise Specified. Persuasive
Developmental Disorder - Not Otherwise Specified (PDD-NOS) a category of PDD referring to
children having significant problems with communication and playand some difficulty interact-
ing with others ,but are too social for diagnosis of autism. The diagnosis is no longer used in
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 100 DAY KIT

DSM5 , but DSM5 indicates that individuals with a “ well-established diagnosis” of these
conditions “ should be given the diagnosis of autism spectrum disorder.”

P etit M al Seizu re, see S eizu res.

P hysical Therapy uses specially designed exercises and eq uipment to help patients regain
or improve their physical abilities.

P hysical Therapist designs and implements physical therapy programs and may work within
a hospital or clinic, in a school or as an independent practitioner.

P ica is persistent eating or mouthing of non-nutritive substances for at least 1 month when
behavior is developmentally inappropriate (older than 18-24 months). Substances may include
items such as clay, dirt, sand, stones, pebbles, hair, feces, lead, laundry starch, wood, plastic
and more.

P icture Ex change C ommunication System ( P EC S) is an alternative communication system

using picture symbols taught in phases starting with simple exchange of symbol for desired
item. Individuals learn to use picture symbols to construct complete sentences, initiate
communication and answer q uestions.

P iv otal Response Treatment ( P RT) is a therapeutic teaching method using incidental

teaching opportunities to target and modify key behaviors related to communication, behavior
and social skills.

P ragmatics are social rules for using functional spoken language in a meaningful context or
conversation. Challenges in pragmatics are a common feature of spoken language difficulties
in children with ASD.

P rev alence is the current number of people in a given population who have a specific
diagnosis at a specified point in time. As of May 2014, the U.S. Centers for Disease Control
and Prevention estimated autism prevalence as 1 in 68 children, including 1 in 42 boys and
1 in 1 8 9 girls.

P rompts for Restructuring Oral M uscular P honetic Targets ( P ROM P T) is an approach

used in speech-language therapy that manually guides an individual’ s j aw, tongue and lips
through a targeted word, phrase or sentence to develop motor control and proper oral
muscular movements, while eliminating unnecessary muscle movements such as j aw sliding.

P roprioception is the receiving of stimuli originating in muscles, tendons and other

internal tissues.

P rosod y is the rhythm and melody of spoken language expressed through rate, pitch, stress,
inflection or intonation. Some children with ASD have unusual intonation (flat, monotonous,
stiff or “sing songy” without emphasis on the important words).

P sychiatrist is a doctor specializing in prevention, diagnosis and treatment of mental illness

who has received additional training and completed a supervised residency in specialty.
May have additional training in specialty, such as child psychiatry or neuropsychiatry and can
prescribe medication, which psychologists cannot do.

P sychologist is a professional who diagnoses and treats diseases of the brain, emotional
disturbance and behavior problems. May have a master’s degree (M.A.) or doctorate (Ph.D.)
in psychology. May have other qualifications, including Board Certification and additional
training in a specific type of therapy.
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Q
R
Receptiv e L ab eling, see recep tive l ang u ag e.

Receptiv e L anguage is the ability to comprehend words and sentences and begins as early
as birth and increases with each stage in development. By 1 2 months of age, a child begins
to understand words and responds to his or her name and may respond to familiar words in
context. By 18 to 20 months, a child identifies familiar people by looking when named
(e.g., Where’s mommy?), gives familiar objects when named (e.g., Where’s the ball?) and
points to a few body parts (e.g., Where’s your nose?). These skills commonly emerge slightly
ahead of expressive language skills.

Reinforcement or reinforcer, is any obj ect or event following a response, increasing or

maintaining the rate of responding. Positive reinforcer may be produced by or added after
a response.

Relationship D ev elopment Interv ention ( RD I) is a therapeutic teaching method based on

building intelligence competencies of social connection – such as referencing, emotion
sharing, coregulation and experience sharing – that normally develop in infancy and early
childhood.

Respite C are is temporary, short-term care provided to individuals with disabilities, delivered
in the home for a few short hours or in an alternate licensed setting for an extended period of
time. Respite care allows caregivers to take a break in order to relieve and prevent stress
and fatigue.

Rett Synd rome is a very rare disorder in which patients have symptoms associated with PDD
along with problems with physical development. They generally lose many motor or movement
skills – such as walking and use of hands – and develop poor coordination. The condition has
been linked to a defect on the X chromosome and as a result, almost always affects girls.

S
Seizu re refers to uncontrolled electrical activity in the brain, which may produce a physical
convulsion, minor physical signs, thought disturbances or a combination of symptoms.

Seizu re, ab sence, takes the form of a staring spell as the person suddenly seems “ absent”
and has a brief loss of awareness. May be accompanied by blinking or mouth twitching.
Absence seizures have very characteristic appearance on EEG. Also called a petit mal
seizure.

Seizu re, atonic, is a seizure marked by the person losing muscle tone and strength and
unless supported, falls down. Atonic means lack of muscle tone and strength.

Seizu re, sub clinical ( Electrographic Seizu res) are visible on the EEG, but the patient does
not exhibit clinical symptoms. Electroencephalography often detects subclinical seizures
during sleep.

Seizu re, tonic clonic, involves two phases – tonic phase when body becomes rigid and
clonic phase of uncontrolled j erking. May be preceded by aura and is often followed by
headache, confusion and sleep. May last for seconds or continue for several minutes.
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Self-Regulation and self-control are related but not the same. Self-regulation refers to both
conscious and unconscious processes that have an impact on self-control, but regulatory
activities take place more or less constantly to allow us to participate in society, work and
family life. Self-control is a conscious activity.

Sensory D efensiv eness is a tendency, outside the norm, to react negatively or with alarm to
sensory input which is generally considered harmless or non-irritating to others. Also called
hypersensitivity.

Sensory Input, see sensory stimu l i.

Sensory Integration is the way the brain processes sensory stimulation or sensation from the
body and then translates that information into specific, planned, coordinated motor activity.

Sensory Integration D ysfunction a neurological disorder causing difficulties processing

information from the five classic senses (vision, hearing, touch, smelland taste), sense of
movement (vestibular system)and positional sense (proprioception). Sensory information is
sensed normally, but perceived abnormally. May be a disorder on its own or with other
neurological conditions.

Sensory Integration Therapy is used to improve ability to use incoming sensory information
appropriately and encourage tolerance of a variety of sensory inputs.

Sensory Stimulus Agent, action or condition, internal (e.g., heart rate, temperature) or
external (e.g., sights, sounds, tastes, smells, touchand balance) that elicits physiological or
psychological response. Response depends on ability to regulate and understand stimuli
and adj ust emotions to demands of surroundings.

Sleep Hygiene a set of practices, habits and environmental factors critically important for
sound sleep, such as minimizing noise, light and temperature extremes and avoiding naps
and caffeine.

Social C ommunication D isord er ( SC D ) is a new diagnostic category established in the

DSM-5 that applies to individuals who have deficits in the social use of language, but do
not have the restricted interests or repetitive behavior you see in those with autism spectrum
disorders.

Social C ommunication/ Emotional Regulation/ Transactional Support ( SC ERTS) is an

educational model of treatment that differs notably from the focus of “ traditional” ABA by
promoting child-initiated communication in everyday activities.

Social Reciprocity is back-and-forth flow of social interaction. How behavior of one person
influences and is influenced by behavior of another and vice versa.

Social Stories, developed by Carol Gray, are simple stories that describe social events and
situations that are difficult for a child with a PDD to understand. For example, a social story
might be written about birthday parties if the child appears to have a difficult time understand-
ing what is expected of him or how he is supposed to behave at a birthday party.

Social Worker is a trained specialist in the social, emotional and financial needs of families
and patients. Social workers often help families and patients obtain the services they have
been prescribed.

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Special Ed ucation is specially designed instruction, at no cost to families, to meet uniq ue

needs of child with disability, including instruction conducted in the classroom, in the home,
in hospitals and institutions and in other settings and instruction in physical education.

Speech-L anguage Therapist or Speech Language Pathologist, specializes in human com-

munication. The focus is on communication, not speech, to increase child’s ability to impact
and understand their environment.

Speech-L anguage Therapy is provided with the goal of improving an individual’ s ability to
communicate. This includes verbal and nonverbal communication. The treatment is specific
to the individual’ s need.

Spoken L anguage (also referred to as expressive and receptive language) is the use of
verbal behavior or speech, to communicate thoughts, ideas and feelings with others. Involves
learning many levels of rules - combining sounds to make words, using conventional mean-
ings of words, combining words into sentences and using words and sentences in following
rules of conversation.

Stereotyped Behav iors refer to an abnormal or excessive repetition of an action carried

out in the same way over time. May include repetitive movements or posturing of the body
or obj ects.

Stereotyped P atterns of Interest or restricted patterns of interest refer to a pattern of

preoccupation with a narrow range of interests and activities.

Stimming or “ self-stimulating” behaviors, are stereotyped or repetitive movements or

posturing of the body that stimulate ones senses. Some “ stims” may serve a regulatory
function (calming, increasing concentration or shutting out an overwhelming sound).

Sub clinical Seizu re, see S eiz u res.

Symb olic P lay is where children pretend to do things and to be something or someone else.
Typically develops between the ages of 2 and 3 years. Also called make believe or pretend
play.

Synd rome is a set of signs and symptoms that collectively define or characterize a disease,
disorder or condition.

T
Tactile D efensiv eness is a strong negative response to a sensation that would not ordinar-
ily be upsetting, such as touching something sticky or gooey or the feeling of soft foods in the
mouth. Specific to touch.

TEACCH is a therapeutic approach broadly based on the idea that individuals with autism
more effectively use and understand visual cues.

Tonic-clonic seizu re, see S eiz u res

Typical D ev elopment (or healthy development) describes physical, mental and social devel-
opment of a child who is acq uiring or achieving skills according to expected time frame. Child
developing in a healthy way pays attention to voices, faces and actions of others, showing
and sharing pleasure during interactions and engaging in verbal and nonverbal back-and-forth
communication.

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V
V erb al Behav ior 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.

V estib ular System refers to the body’ s system for maintaining eq uilibrium.

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Resources
Different books and websites resonate with different families. Here are some that parents have recom-
mended. For a more complete list of books and web sites, as well as magazines, products, and DVDs,
please visit our Resource Library on the Autism Speaks web site, AutismSpeaks.org.

BOOKS
1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorder
by Veronica Zysk and Ellen Notbohm

Activity Schedules for Children with Autism: Teaching Independent Behavior

by Lynn E., McClannahan, Ph.D. and Patricia J. Krantz, PhD

Autism Solutions
by Ricki Robinson, MD

The Autism Sourcebook

by Karen Siff Exkorn

Autism Spectrum Disorders: The Complete Guide to Understanding Autism,

Asperger’s Syndrome, Pervasive Developmental Disorder and Other ASDs
by Chantal Sicile-Kira

Autism Spectrum Disorders: What Every Parent Needs to Know

from the American Academy of Pediatrics, edited by Alan I. Rosenblatt and Paul S. Carbone

Changing the Course of Autism: A Scientific Approach for Parents and Physicians
by Brian Jepson, M.D. and Jane Johnson

Children with Autism: A Parent’s Guide

by Michael D. Powers

Could it be Autism? A Parent’s Guide to the First Signs and Next Steps
by Nancy Wiseman

Does My Child Have Autism? A Parent’s Guide to Early Detection and Intervention in
Autism Spectrum Disorders
by Wendy L. Stone, Ph.D. and Theresa Foy Digeronimo, MEd

Facing Autism: Giving Parents Reasons for Hope and Guidance for Help
by Lynn M. Hamilton

Let Me Hear Your Voice: A Family’s Triumph over Autism

by Catherine Maurice

Making Peace with Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts
by Susan Senator

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Not My Boy!: A Father, A Son, and One Family’s Journey with Autism
by Rodney Peete

Nourishing Hope
by Julie Matthews

Overcoming Autism: Finding the Answers, Strategies, and Hope That Can
Transform a Child’s Life
by Lynn Kern Koegel, PhD Claire LaZebnik

Playing, Laughing and Learning with Children on the Autism Spectrum:

A Practical Resource of Play Ideas for Parents and Caregivers
by Julia Moor

Play and Engagement in Early Autism: The Early Start Denver Model
by Sally Rogers, PhD and Geraldine Dawson, PhD

A Practical Guide to Autism: What Every Parent, Family Member, and Teacher
Needs to Know
by Fred R. Volkmar and Lisa A. Wiesner

Siblings of Children with Autism: A Guide for Families

by Sandra L. Harris, PhD and Beth A. Glasberg, PhD

Special Diets for Special People: Understanding and Implementing a Gluten-Free and
Casein-Free Diet to Aid in the Treatment of Autism and Related Developmental Disorders
by Lisa S. Lewis

Ten Things Every Child with Autism Wishes You Knew

by Ellen Notbohm

Thinking in Pictures, Expanded Edition: My Life with Autism

by Temple Grandin, PhD

Understanding Autism For Dummies

by Stephen Shore and Linda G. Rastelli

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WEBSITES

Autism Speaks
AutismSpeaks.org

Autism Research Institute

Autism.com

Autism Society
Autism-Society.org

AWAARE: Autism Wandering Awareness Alerts Response and Education Collaboration

awaare.org

Center for Autism & Related Disorders

centerforautism.com

Interactive Autism Network

ianproject.org

OCALI: Ohio Center for Autism and Low Incidence

ocali.org

Organization for Autism Research

ResearchAutism.org

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Have more questions or need assistance?

Please contact the Autism Response Team for
information, resources and tools.

TOLL FREE: 888-AUTISM2 (288-4762)

EN ESPAÑOL: 888-772-9050

Email: FAMILYSERVICES@AUTISMSPEAKS.ORG
WWW.AUTISMSPEAKS.ORG
Text ART to 30644

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span,
for the needs of individuals with autism and their families. We do this through advocacy and support;
increasing understanding and acceptance of people with autism; and advancing research into causes and
better interventions for autism spectrum disorder and related conditions.

To learn more about Autism Speaks, please visit AutismSpeaks.org.