Autism Parent Packet CDRC
Autism Parent Packet CDRC
Autism Parent Packet CDRC
As the LEND parent participant, Misti Moxley compiled this book. This
quality improvement project looked at the information parents were
given upon receiving a diagnosis of Autism for their child. The purpose
of the project was to provide accurate, helpful and supportive
information to families throughout their journey.
The art work in this book was created by Griffin Moxley a 10 year old
child with Asperger’s Syndrome, and Misti’s son.
Contact Information
We appreciate the opportunity to meet you and your child and to help you better
understand Autism. Please think of us as a resource for you to answer questions, or help you
find what you need.
If you have specific questions about the report you received from the Autism clinic, please
make a list of questions and call our team member who gave you the information at your
visit. Their name and phone number is listed on the report.
Feel free to contact our family consultant Shelley Barnes with questions or feedback about
your evaluation (503-494-0604).
Thank you again for trusting us with the care of your child.
Personal Information........................................................................................................................................... 89
What Do I Do Now?
Every child and family member that comes to CDRC is unique, and comes with their own set
of expectations and questions. Some families are ready to hear that their child has Autism,
and others may take some time to accept the diagnosis.
No matter what you feel today, at some point you will be thinking: “What do I do now?”
Finding out what resources are available to you and coming up with a plan to help your child
be successful is a great place to start.
Getting Started
We have provided (below) a list of things that you can do to get started. Many of them are also
listed on the recommendations you were given in the clinic.
Contact your local Education Service District (ESD) if your child is under 5 years old.
• Begin an early intervention program right away if your child is not already
participating in one. These programs are almost always free in Oregon and
Washington.
If your child is school age, consider sharing information with their teacher or school
special education team.
• Sharing information and coming up with a plan together is helpful for the school,
the parents and most of all, the child.
7
Dealing With your Child’s Diagnoses:
Finding out that your child has Autism can be a very emotional time for your family.
All families react in different ways, but many parents report that they felt like they were
grieving. As a parent, you love your child so much, and you want so much for them that it is
heart breaking to think that things will be hard for them.
There are some common stages that families report experiencing. Stages of the grieving
process may include:
Shock or Confusion
The day your child is diagnosed with Autism can be very overwhelming and
confusing. Some people may deal with this by not agreeing with the diagnosis,
and wanting a second opinion. Some may completely ignore it, while others
just feel overwhelmed and confused. It takes a bit of time to really process the
news you have been given.
Sadness
Some families feel like they are mourning the loss of what they thought their
child might become. Also, the realization of how unfair it will be that their child
will struggle with many things is hard to accept. It is OK to be sad, and it is even
healthy to cry. It is important to not let the sadness consume you because the
thing that your child needs most is you. Starting to come up with a plan on how
you are going to help your child can move you forward and help you feel more
in control, even if it is just one thing to start with.
Guilt
Many parents feel guilt. They wonder if they may have caused their child’s
Autism, or if they could have done something to prevent it. Even though the
causes of Autism are not completely known, we do know that it is nothing you
could have controlled. Research suggests that Autism is often a genetic
disorder, but that there may be some environmental things that make it more
likely to occur. The Autism rates are similar across ethnic and racial groups, so it
is widely accepted that it is not caused by diet.
8
Anger
It is very hard to watch your child struggle with things that come naturally to
other children. Sometimes you might feel angry at others, yourself, or anger
that is not directed at anyone in particular. This is a natural part of the grieving
process. Even if you feel like you have accepted that your child has Autism, there
will be times when things seem so unfair and it will make you angry. Talking to
others about your child can help. It is comforting to know you are not alone.
Many times others do not understand that you are hurting or that you may need
support.
Denial
There may be times when you feel like it is not true. They must have seen your
child on a bad day, or maybe they did not really ask all the right questions. Many
parents feel this way, and it is a way of coping with something that is
overwhelming. Make sure you are aware of this and continue to provide the
support your child needs.
Loneliness
This can often come and go for a parent whose child has a disability. It always
seems that no one will understand, or others don’t have to go through the same
things. Others who do not have a child with a disability may find it hard to
understand what you are going through. It is up to you to tell them what it is
like, so they can support you. It is also very helpful to talk to other parents who
have children with Autism or other disabilities. They most likely will know
exactly how you feel.
Acceptance
This means that you know your child has Autism, and you are ready to advocate
for what they need. Creating a plan and taking steps to help your child is
ultimately what will give them the best chance for success.
9
Taking Care of Your Family:
Many times families work so hard trying to meet the needs of their child, that they may
neglect the needs of the rest of the family. It seems that there is always more that can be
done. It is important to balance what you do for your child with the needs of the rest of the
family. Tired and burned-out parents are not parenting at their best. Make sure to take time
for yourselves and your other children, especially in the first few weeks after your child is
diagnosed. Take time to experience the emotions you are having and find support in others
that are close to your child. Don’t be afraid to talk to a mental health professional if you need
to, or find a support group.
When you are ready to learn about your child’s diagnosis, we encourage each family member
to take some time to search the internet, find support groups, and read books about Autism.
Also, keep track of your questions and bring them with you to your child’s appointments.
Understanding Autism is a large part of being able to help your child. Keep an open mind,
and listen to others, but also know that what may seem to work for one family may not work
for your family. Remember you know your child best!
Next, we encourage you to join parent support groups and begin to develop a treatment
program that is comfortable. Support groups provide emotional support for families, but
they are also a great place to learn from other parents. Many of whom are ahead of you on
this journey and can provide guidance in how to access services, find good providers, and
just what to expect.
10
Siblings
Siblings of a child with Autism often have their own set of challenges. It is important
that you take time alone with your other children. They are often overshadowed by
the demands of their sibling with Autism. It is also important to find activities that
siblings can enjoy together. Teach your other children to be proud of their brother or
sister with Autism, and to recognize that each child is special in different ways.
Autism is treatable!
• Getting your child diagnosed early so they can receive help at an early age will
allow for the greatest amount of improvement.
• Children with Autism are able to form strong relationships with others.
• Children with Autism grow, change, learn new skills, and make progress toward
reaching their potential every day.
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Welcome To Holland
by Emily Perl Kingsley ©1987
I am often asked to describe the experience of raising a child with a disability - to try to help
people who have not shared that unique experience to understand it, to imagine how it
would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You
buy a bunch of guide books and make your wonderful plans. The Coliseum. The
Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you
go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to
Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be
in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight
plan. They've landed in Holland and there you must stay. The important thing is that they
haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and
disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language.
And you will meet a whole new group of people you would never have met. It’s just a
different place.
It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and
you catch your breath, you look round....and you begin to notice that Holland has
windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is
busy coming and going from Italy... and they're all bragging about what a wonderful time
they had there.
And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I
had planned." And the pain of that will never, ever, ever, ever go away... because the loss of
that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be
free to enjoy the very special, the very lovely things ... about Holland.
12
Understanding and Diagnosing Autism
Understanding Autism
Autism, also known as Autistic Disorder, is one of five Disorders known as Pervasive
Developmental Disorders (PDDs). The rules for diagnosing these Disorders are taken from
the Diagnostic and Statistical Manual of Mental Disorders fourth edition (DSM -IV). This
document outlines what symptoms a child must have to be diagnosed with an Autism
Spectrum Disorder (More information on the DSM IV can be found in the appendix).
Autism Spectrum Disorders (ASDs) are a group of developmental disabilities caused by the
way a child’s brain develops. Symptoms of Autism Spectrum Disorders usually appear during
the first three years of life, and include significant delays in a child’s ability to relate to and
communicate with other people. The three Disorders that are considered Autism Spectrum
Disorders are:
Asperger’s Syndrome
Autistic Disorder
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How is Autism Diagnosed?
There is no blood test that can be done to tell parents if their child has Autism. These tests
are known as “standardized” or “validated” tests. These usually require a trained person (a
doctor or psychologist) to play and interact with the child while looking for some very
specific behaviors. They write down the behaviors they observed, and then they score their
observations. This tells them how the child’s behavior and skills compare to typically
developing kids and other kids with Autism.
The following chart is a list of some of the tests that might be used in the CDRC Autism clinic.
There are a variety of tests listed, and they provide all kinds of information about a child. It is
important for the providers to get a clear picture of how a child is functioning in many areas.
Test Name Purpose of the test
Child Behavior Check List This a blue form that the parents fill out. It asks
questions about the child’s behavior in many areas of
their life. This helps the providers to get a good picture
of the child in different settings.
Sensory Profile This form is filled out by the parents. It asks questions
about any difficulties the child is having with sensory
input (light, sound, textures, foods…)
Autism Diagnostic This is a play-based test that looks at a child’s play in
Observation Schedule (ADOS) many different ways. It is specifically for diagnosing
Autism. It looks at interaction, communication, and
play.
Mullen Scale of This norm referenced test looks at the overall
Early Learning development of a child.
Vineland Adaptive This is a test that looks at a child’s adaptive skills, or
Behavior Scale how they are get along in their daily lives.
Speech and Language A variety of tests and observations may be used. The
Evaluation purpose is to see how the child’s speech (the sounds)
and their language (how they use the words) is
developing. Also how they are using their speech to
communicate.
Motor skills Evaluations An Occupational Therapist will evaluate a child’s motor
(fine and gross motor skills) skills by interacting and playing with the child. They
may use a variety of tests to measure the fine and the
gross motor skills.
14
Autistic Disorder
Autistic Disorder is sometimes called Classic Autism. A child with Autistic Disorder would
have delays in the three core areas; social skills, communication skills, and restrictive or
repetitive behaviors.
Social Skills
Many children with Autism or Autistic Disorder are not interested in playing with other
children. Some reasons why they might rather play alone may include:
• It is hard to “read” the social cues of the playmate.
• It is hard for them to understand that others have different needs from
their own.
• It is just easier to play alone.
Communication Skills
Children with Autistic Disorder have a delay in their speech or communication development.
This can include a variety of different things:
• They may not understand that speaking, pointing and gesturing are ways
to help others understand what they need.
• Often when speech does develop it is repetitive or echoes what others are
saying.
• It is common for a child with Autism to use a combination of real words
and jargon or made up words when they speak. The words are not always
used for communication.
To receive a medical diagnosis of Autistic Disorder, a child must have impairment in each of
these areas. Because it is a “Spectrum” Disorder, Autism can look very different in each child.
15
Asperger’s Syndrome
Children with High-functioning Autism and Asperger’s Syndrome have many characteristics
in common.
Social Skills
Many children with Asperger’s Syndrome have a hard time playing with other children.
Some reasons why they might choose to play alone may include:
• It is hard to “read” the social cues of the playmate.
• It is hard for them to understand that others have different needs from their
own.
• It is just easier to play alone.
Communication Skills
Children with Asperger’s Syndrome do not have a delay in their anguage development, but
they often do have different speech patterns than typically developing children. This can
include a variety of different things:
• They see the world concretely and speak the same way.
• Often it is hard for them to change the tone of their voice in the right places.
• Their language often sounds mature.
16
Pervasive Developmental Disorder (PDD-NOS)
Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) is often referred to
as PDD and is an Autism Spectrum Disorder. To receive a diagnosis of PDD-NOS, a child must
have some but not all of the symptoms of Autistic Disorder.
Many doctors and psychologists describe this diagnosis as being a less severe form of
Autism. Children who are very young (under 3 years) will often receive this diagnosis to start
with.
It is a bit confusing to say it is a less severe form, because many children with PDD are
severely affected by the symptoms they have. The difference is that they do not have as
many symptoms as a child who has Autistic Disorder.
b lf
17
Other Characteristics of Autism Spectrum Disorders
Sensory Processing Differences
Being under, or over responsive to sound, light, touch, textures, or pain is very common in
children with an Autism Spectrum Disorder. A few of the common symptoms of sensory
processing differences are:
• Very picky eater.
• Hate’s to get dirty.
• Get very upset at loud noises.
• Hide’s in small spaces.
• Love the feel of some things (squeezing, rubbing).
Delayed Thinking
Some children with Autistic Disorder or PDD may have impairment in their thinking skills.
Children under 5 years old may have a Global Developmental Delay. This means that their
general thinking is behind what their typical peers would be able to do. If the child is still
significantly behind after age 5, they may receive the diagnosis of Intellectual Disability (also
known as Mental Retardation).
Advanced Thinking
Children with an Autism Spectrum Disorder also can be very smart. They sometimes have
one area they are interested in, and they become an expert in that area. Even the children
who are very smart may still have a hard time in many areas such as:
• Abstract Thinking.
• Seeing the whole picture.
• Filtering out what is not important.
• Organization.
• Planning.
• Problem solving.
• Taking something they have learned and applying it to a different setting.
Intellectual Disability
If a child has a low IQ and their adaptive skills or “life skills” are significantly delayed areas
after age six, it is called Intellectual disability or mental retardation.
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Anxiety and Depression
Some children with an Autism Spectrum Disorder suffer from anxiety and/or depression.
This is more common as children get older and become more socially aware. It is important
to keep in mind that mood changes over a period of time should be discussed with the
child’s therapist or the primary doctor.
Pica
This is where children regularly eat items that are not food (clay, dirt, crayons). Most children
do this sometimes, but children with Pica do it often and it continues over time.
Seizure Disorder
Some children with Autism also have seizures.
Genetic Disorders
Some children have Autism as a part of a genetic Disorder. Fragile X syndrome is a genetic
disorder that can cause Autism. Having a child tested for a genetic disorder will not cure
their Autism, but it will tell families why the child has Autism. It can also help in planning and
understanding who else in the family may be at risk for passing on the syndrome to their
children.
Clumsiness
Some children with Autism are clumsy and may have trouble developing motor skills. Some
also have weak upper body strength and may have delayed coordination development.
Gastrointestinal Disorders
Many parents report gastrointestinal (GI) or stomach problems in their children with Autism.
Children with Autism may have problems such as chronic constipation or diarrhea.
Sleeping Problems
Many children with Autism have trouble falling asleep, or staying asleep at night. This can be
very hard on the child and the rest of the family. If your child is having trouble with sleep, talk
to their doctor about things you can do to help.
ZZZZ
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What Causes Autism?
Scientists do not know exactly what causes Autism Spectrum Disorders (ASDs). There is a lot
of research being done to answer that question. It is likely that within the next 20 years there
will be much more information available to explain what causes ASDs. For now, there are
some things that are known or widely accepted.
• ASD are caused by the way the brain develops.
• There is not one single cause of Autism. There are many factors that may
make a child more likely to have Autism.
• Genes are one of the risk factors. A child with a sibling or parent who has an
ASD is more likely to have an ASD.
• 10% of children that have an ASD also have a genetic Disorder (Down
Syndrome, Fragile X Syndrome, and others).
• Some drugs taken during pregnancy have been linked to higher rates of
ASDs.
• There is some evidence that some children are born with a susceptibility to
Autism, yet the “triggers” that lead to Autism have not been identified.
20
Defining “The Spectrum”
The Autism “Spectrum” simply means that symptoms are very different for each child. It is a
wide range of symptoms that affect children in a wide range of different ways, along a
Spectrum or continuum.
To receive a medical diagnosis of Autism (Autistic Disorder), a child must have impairment in
each of the three areas (social skills, communication, repetitive behaviors). Many children
also have impairment in the area of sensory integration (sounds, textures, smells, etc.)
Because it is a “Spectrum” Disorder, it can be very different in each child. One child may have
a very hard time with social skills and have very few repetitive behaviors. Another child
might be consumed by the repetitive behaviors and have an easier time with social skills.
Each symptom a child has can fall anywhere along “the Spectrum”. They may have one area
of their language that is very well developed, and another that is very hard for them.
Communication Skills
Severely Slightly
Restrictive and/ Repetitive Behavior
Affected Affected
Social Skills
High-Functioning Autism
A child who has High function Autism (HFA) would have the same symptoms as a child with
Autistic Disorder. The difference would be the child with HFA must have average or above
average thinking skills.
Many families ask what “level” of Autism their child has. There is not a system of levels, only
the different diagnoses (Asperger’s, High Functioning Autism, and Autistic Disorder).
21
Education Eligibility/Label versus Medical Diagnosis
A medical diagnosis is given by medical professionals who evaluate a child and base their
findings on specific symptoms that are described by the Diagnostic Manual. This diagnosis is
what you received at CDRC.
All children with an ASD have some defining things in common. In order to have a diagnosis
of an Autism Spectrum Disorder (ASD) a child must have impairments in three major areas
for a medical diagnosis, and four major areas for educational eligibility/label.
If the child has a medical diagnosis of Autism, but the school does not think the child’s
Autism is affecting their school functioning, they do not have to provide special education
services.
Washington
A child in Washington State cannot be given an educational eligibility/label of Autism unless
they have a medical diagnosis. This means that often the child can qualify for school services
due to one of their impairments, like speech but not for Autism unless they have a medical
diagnosis.
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Public Services Birth-21 Years
Special Education (0-Kindergarten)
Once a child has been identified as having an ASD, they are eligible for special education
services. The federal government mandates that all children with a disability receive a “free
and appropriate education.”
For children birth until kindergarten most educational services are provided by the child’s
local Educational Service District (ESD).
• For children under 3 years old it is called Early Intervention.
• Children between the ages of 3 years (at the time they start) and
kindergarten receive Early Childhood Special Education.
For young children who qualify, Early Intervention and Early Childhood Special Education
(EI/ECSE) are the two programs that are available. A team of professionals and the child’s
parents work together to come up with an Individual Family Service Plan (IFSP). This is a plan
that helps the child learn strategies to be more successful at home and at school. This plan
will include how the child is performing at that time, and the goals they will be working
towards. Some of the things that ESDs may provide include:
The Early Intervention programs can be very different from region to region. Some of the
services will be provided in the home, others may be at a preschool or other location
depending on the needs of the child and the resources of the ESD.
The contact information for the Oregon and Southwest Washington ESDs are located in the
appendix.
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Special Education Services (Kindergarten-age 21):
Children between the ages of 5 and 21 receive special education services through their local
public school district. These programs always include an Individualized Education Program
(IEP). This is where a team of school professionals and the child’s parents decide on what the
child needs to be successful at school. The IEP is a plan that the school is required to have in
place, and follow for each child with a disability.
The range of services that may be provided by a school district is very broad, and depends
on the needs of the child. Some children may benefit from being in a classroom with
children who also have disabilities, while for other children it is more important to have
positive social role models and they may remain in the regular education classroom.
It is very important that parents are involved in the decisions that affect the education of
their child. Parents should be treated as equal partners in the education process. Often
parents have to insist on different placements or interventions for their child before the
school is able to make them happen. This is not because the school does not care about the
child, it is more likely that they are over loaded and have many other children to manage.
Parents know their child best, and it is often the parent who guides this process to make sure
their child gets what they need at home and at school.
24
How does the Oregon Department of Human Services support the families?
Autism an Introduction for Parents:
A guide to Oregon’s Human Services System.
Published by: Oregon Technical Assistance Corporation
Case managers can help you think about the type of respite and training you need to care for your child at
home. You will play a big part in this — you determine where and when you need help, and what kind. Case
managers will coordinate and monitor the assistance you receive. Remember, the program is small and
probably can’t meet all your needs. But it can get you started.
A legal agreement with the State is required. It is called the Developmental Disabilities Child Placement
Agreement. Also, a plan will be written to include ways that families can remain involved with their children
during placement. Families are required to authorize the Oregon Program for Seniors and People with
Disabilities (SPD) as payee for their children’s SSI benefits (see below). If the child does not currently receive
SSI, the program will apply for these benefits in the child’s name. The cost of the placement is not charged to
families; however, this could change in the future. Families are expected to provide clothing and retain health
insurance for their child. SPD also will apply for a medical card to supplement the family’s health insurance.
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Supplemental Security Income (SSI)
SSI is a federal program that provides income and medical insurance through Medicaid to eligible children
who are disabled or chronically ill and whose families have little or no income or financial resources. Your
child may qualify for SSI payments if your family is eligible for Medicaid. Applying for SSI can be a challenging
and complex task, but it can be done. For more information, contact your county Mental Health and
Developmental Disabilities Services Office.
Oregon’s Program for Seniors and People with Disabilities offers services ranging from respite care and
technical consultation to intensive in-home assistance, crisis intervention and out-of-home placement. There
is no separate, specific program for individuals with Autism. Instead, services are provided through county
and state programs that serve people with developmental disabilities, including children and adults with
Autism.
If your child is under 18 years of age, it’s important to understand that there is no “entitlement” to services from
the Program for Seniors and People with Disabilities. Unlike special education, where children with disabilities
have a legal right to a public education, there is no law that requires services to young children with
disabilities — even if they are eligible for them.
Services are generally limited to available funds in crisis situations. However, in the past few years, services for
children with disabilities who are under 18 years old and their families have been expanded and improved.
Now there is more help available for families caring for children with disabilities at home...and more dollars
going to prevent crisis and “burnout” in families.
If your adult child is 18 years or older and meets the developmental disability eligibility requirements, he or
she is entitled to support services in Oregon. This entitlement is the result of a recent lawsuit that requires
“access to support services” for adults with developmental disabilities who are living at home. Counties are
working now to enroll eligible people in the system and that could take some time.
By June 30, 2009, any person 18 years of older who is eligible is entitled to receive support services based on
an individual plan. Services can include such things as respite care, in-home staffing, job coaching and
employment supports, community inclusion activities or other supports that help a person to live and work in
his or her community. The lawsuit also allows, under certain circumstances, eligible adults to receive foster
home or similar 24-hour services. However, access to these types of services is limited
No matter what age your child is, the “doorway” to services is your local County Developmental Disabilities
Program. It’s usually located in the County Mental Health Department (see State & Local Developmental
Disability Services). Case managers (sometimes called Service Coordinators) in your County Developmental
Disabilities Program will talk with you to see if your child is eligible for services.
• If your child is younger than 18 years, the case manager will help you figure out what kind of help
you need and work with you to develop service options.
• If your child is 18 years or older, the county case manager will work with your son or daughter and
you to identify the options and help you begin accessing available services.
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Therapy and Treatment:
Therapy Outside of School
Experts agree that early intervention programs that provide 20-25 hours a week directly
working with the child at home, school or therapy gives the child the best chance for
success.
As your child’s parent, you must be an active and equal partner in deciding on intervention
programs. You know your child best, and will be able to provide valuable information to
educators and other professionals. Collaboration among the treatment providers and the
parents is an essential part of the intervention. The parent is the “glue” that holds the team
together.
In general, interventions for children with Autism can be divided into three different service
delivery “systems.” These systems include:
Community-Based Services
Children who receive special education services may also benefit from other professional
services in the community. Most interventions are available through private providers and
many of them may be covered by a child’s health insurance. The family often still has to pay
a portion of the fee. Some programs do offer financial aid to families who meet an income
requirement.
Some common examples of Community-Based or In-Home Therapies that can be found are:
• Speech Therapy
• Occupational Therapy
• Behavioral Therapy
• Applied Behavioral Analysis
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How to Decide on a Therapy
It can be overwhelming trying to find a place to start. Unless you have an idea of what your
child needs to work on, you do not know what kind of therapy to look for.
• Discussing this with your child’s doctor or other professionals that have
worked with your child can help.
• Talking with other parents about their children with or without Autism can
help you to understand your child’s development. They may also be able to
tell you what types of interventions have helped their children, and which
ones have not been helpful.
• The Autism Society of America has developed some guidelines to explain and
evaluate different interventions for children with Autism.
Children with Autism have many different needs and no one method is going to be effective
in treating all areas. A combination of treatments is usually the most effective.
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Things to Consider When Deciding on a Therapy
1. Most importantly, could the therapy harm your child in any way?
2. Will the therapy cause undue hardship on your family?
3. Is the therapy scientifically based and widely accepted?
4. How will the success of the therapy be measured?
5. Are you learning so you can work with your child at home?
6. Is the person qualified to do the therapy?
It is also important to focus on the symptoms that are the most delayed for the child, or are
causing the most frustration for the child and family. Use the milestones in this book to
decide where your child is the most delayed.
There are many different types of therapies that are recommended by different people to
treat Autism. It is important to choose therapies that are the most beneficial to your child.
The following pages are explanations of the different therapies you may hear or read about.
It is important to know that no one therapy is going to solve all the issues a child with Autism
might have. A combination of therapies is often done by a provider, or several providers to
help your child make the most progress.
In the following section called Types of Therapies Available, many therapies are described.
They are listed as:
• Scientifically Based,
• A Promising Practice, or
• Limited Supporting Information for Practice.
•
This information was taken from an article called Evidence-Based Practices and Students With
Autism Spectrum Disorders by Richard L. Simpson. It was based on a study that evaluated
many therapies and the evidence for those therapies. A copy of the article summary is in the
appendix.
There is also a category called “Widely Excepted”. This information is not taken from the
article, but is referring to the overall view of the therapy listed. Some therapies do not have
much scientific research to support their outcomes, but they are still good strategies to use
with children. These would be listed as “Widely Excepted”.
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Applied Behavior Analysis: Skill Based Therapy
Background
Applied Behavioral Analysis (ABA) is an intensive, one-on one, structured method of teaching
behaviors and skills. It may also be referred to as Behavioral Intervention, Behavioral
Treatment, Pivotal Response, Discrete Trial Therapy (DTT), or Lovaas Treatment.
How it works
Generally the program will start with the easiest skills and gradually move towards more
difficult ones. Each lesson or skill is broken down into small, measurable elements. Each
element is then taught individually through repeated trials.
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TEACCH: Skill Based Curriculum
Classification Meaning Recommendation
Promising Practice and There has been some Recommended a classroom
Widely Accepted research that may show that based curriculum.
children with Autism improve
when using this curriculum.
Background
Treatment and Education of Autistic and related Communication – handicapped CHildren
(TEACCH) is a program that was developed in North Carolina to use in the school classroom
for children with Autism. It is based on the idea that the child’s environment should adapt to
them, not the other way around.
Research
There has not been a lot of research done on this program, but many people who work with
children who have Autism find the visual strategies and structured environment essential.
Where to Go
There are not many schools that use the TEACCH program outside of North Carolina, but
most schools use some of the same ideas. For more information on the TEACCH program you
can look at their website: www.teacch.com
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Floortime: Relationship Based Therapy
Classification Meaning Recommendation
Limited supporting There has been some Recommended as a part of
information for practice. research that may show that therapy for Autistic Disorder
children with Autism improve or PDD-NOS especially if
when using this curriculum there is a global
developmental delay.
Background
Floortime is a program that is based on Dr. Stanley Greenspans model called Developmental
Individual Difference Relationship Model (DIR). It was developed in the 1980’s and is used to
help children build relationships and communication skills.
Research
There has not been a lot of research done on this program, but many therapists and parents
who work with children who have Autism find this program helpful to get the child to
engage with them. It is most often used along with other behavior therapies.
Where to go
To find more information of Floortime, visit their website at: www.floortime.org
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Relationship Development Intervention (RDI): Relationship Based
Classification Meaning Recommendation
Limited supporting There has been some Recommended as a part of
information for practice and research that may show that therapy for Autistic Disorder
Widely Accepted children with Autism improve or PDD-NOS especially if
when using this therapy. there is a global
developmental delay.
Background
Relationship Development Intervention is very similar to Floortime, but one main difference
it that it was created as a program for parents to do at home with their child. RDI is a child
centered program designed to improve relationship skills through systematic interactions
where the adult is interacting at the child’s level, and slowly moving them forward.
Research
There has not been a lot of research done on this program, but many therapists and parents
who work with children who have Autism find this program helpful to get the child to
engage with them. It is most often used along with other behavior therapies.
Where to go
To find more information of RDI, visit their website at: http://www.rdiconnect.com/
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PECS / Picture Exchange Communication System: Skill Based Therapy
Classification Meaning Recommendation
Promising Practice and There has been some Recommended as a
Widely Accepted research that shows that communication strategy for
children with Autism improve non verbal or early language
when using this curriculum development.
Background
PECS is a program that teaches children and adults who have limited communication skills to
communicate using a picture system and rewards. It was developed in 1985 and was first
used in the Delaware Autistic Program.
Research
There has been some research done on PECS, and those studies have shown that this
program helps children and adults with Autism or other disabilities when they have little or
no speech.
Where to go
Standard PECS pictures can be purchased as a part of a PECS manual (PECS Training Manual,
2nd Edition, by Lori Frost and Andrew Bondy), or pictures can be created by the adult.
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Sensory Integration: Biologically Based Therapy
Classification Meaning Recommendation
Promising Practice and There has been some Recommended for children
Widely Accepted research that may show that who have identified sensory
children with Autism improve sensitivities.
when using this curriculum.
Background
Sensory Integration Therapy is a type of therapy that helps a child with Autism process
sensory information (touch, taste, smell, sounds…). The therapy is usually conducted by an
Occupational Therapist and its purpose is to help a child who is over or under stimulated by
their environment learn how to cope. This therapy is child centered, and involves the adult
playing with the child.
Research
There has been some research done on Sensory Integration Therapy that shows that it is
effective for some children in treating sensory problems, but not all. The research suggests
that it may be more effective for younger children.
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Social Stories: Cognitive Based Intervention
Classification Meaning Recommendation
Promising Practice and There has been some Recommended for social
Widely Accepted research that shows children development in children with
with Autism improve when Asperger’s or HFA.
using this curriculum.
Background
Social Stories are a way to make a social situation concrete and understandable for a child
with Autism. A social story is simply an explanation of what a child might expect in a certain
situation. It is not a therapy on its own, but is commonly used by therapists, schools and
families to help a child with Autism deal with a situation.
Research
There has been some research done on Social Stories as an intervention, but more needs to
be done before this is called a scientifically based intervention. People who work with
children who have Autism find this tool extremely helpful.
Example
The following is a short example of a social story taken from a book called: Sticker Strategies:
Practical Strategies to Encourage Social Thinking and Organization, by Michelle Garcia
Winner. This example would be used for an older child.
Background
There is no prescription medication to treat Autism, but some medications can treat the
symptoms a child with Autism may have. Some of the symptoms that may be treated with
medication include hyperactivity, impulsivity, poor attention, aggression, anxiety,
depression, and mood swings.
Warnings
Given the potential side effects of medication, drug interactions, and unpredictability of how
the child will react, it is strongly recommended that a medical doctor with expertise in
managing medications for children with Autism be involved. A developmental pediatrician
or a child psychiatrist both specialize in this area.
Research
There has been a lot of research conducted on medications. For information on a specific
medication that is recommended to you, ask your pediatrician to explain the research for
that medication, and also where you can look to find it yourself.
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Vitamins and Supplements: Biologically Based Intervention
Classification Meaning Recommendation
Limited supporting There is little or no research This is for you and your
information for practice. to support this therapy. child’s pediatrician,
developmental pediatrician,
or psychiatrist to decide.
Background
Many parents and professionals claim to see some improvement in children who have
Autism when given certain vitamins. There is little or no scientific research supporting this,
and parents should be very careful because some vitamins can be toxic.
Warnings
There are many professionals such as naturopathic specialists who can provide help in this
area. It is important to also seek the advice from your child’s pediatrician. They can help you
decide if the potential outcome of the supplement outweighs the potential harm.
Research
There is little or no scientific data that says vitamins are effective in treating Autism.
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Dietary Interventions: Biologically Based Intervention
Classification Meaning Recommendation
Not scientifically based There is no valid research to This is for you and your
support this therapy. child’s pediatrician,
developmental pediatrician,
or psychiatrist to decide.
Background
Many people claim to have seen improvements to their child's Autism after changing their
diet. The two most common dietary interventions are Gluten and Casein -Free and Yeast-
Free diets.
• Gluten and Casein free diets call for the removal of all wheat, oats, rye, and dairy
products. The thought is that children with Autism do not process these foods and
they cause a disruption in certain processes in the brain. Others will state that the
change in their child was due to the fact that their digestive system was working
better allowing their child to be more comfortable.
• Yeast Free diets call for the removal of all yeast from the diet. The theory is that
children with Autism have an overgrowth of yeast caused by tiny holes in the
gastrointestinal tract. Sometimes anti-fungal medications are also used to
eliminate the yeast.
Warnings
There are many professionals such as naturopathic specialists who can provide help in this
area. It is important to also seek the advice from your child’s pediatrician. They can help you
decide if the potential outcome of the diet outweighs the potential harm.
Specific allergy testing is recommended to determine what your child is allergic to. It is
important that if you are going to try an elimination diet that you are working closely with a
doctor, or a clinical nutritionist. Malnutrition can be more harmful to your child's health then
the possible allergen. If you are planning on trying an elimination diet, a support group can
be helpful.
Research
There is little or no scientific data that says the above diets are effective in treating Autism.
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Heavy Metal Detox: Biologically Based Intervention
Classification Meaning Recommendation
Not scientifically based There is no valid research to Not Recommended and can
support this intervention to be harmful.
treat Autism, and some to
show that it is harmful. There
have been cases of children
dying from this type of
therapy.
Background
Some people believe that Autism is caused by the child being exposed to heavy metals,
particularly mercury. To get rid or the heavy metal in the child they support the use of
Chelation. This is a process where a child uses a lotion, takes a pill, or has an IV to flush out
the metal in their body. Several children have died from this treatment. It is very
controversial.
Warnings
We at CDRC do not endorse detoxification for children with Autism.
Research
There is no scientific research that says Autism is caused by heavy metals.
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Music, Art, and Animal Therapy: Relationship Based Intervention
Classification Meaning Recommendation
Limited supporting There is no research that says Recommended for
information for practice and these therapies treat Autism, relationship building, or self
Widely Accepted but there are many positive esteem.
aspects of each of these
therapies.
Animal Therapy
Owning a pet or interacting with an animal is something most children enjoy. There are
many positive aspects of having a pet like: learning responsibility, caring for something,
having something to love and love you back.
Horse therapy (Equine therapy or hippotherapy) is used to allow children to interact and care
for a horse. This is said to help the child’s self esteem.
Therapy dogs are being used in different ways for children with Autism. Some are highly
trained to assist in keeping the child safe.
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42
Developmental Milestones
The following pages are milestones that can help you better understand where your child’s
skills may be advanced or delayed. They are things that typically developing children would
do during a particular age range.
The information was taken from two resources, and you can find them online if you are
interested in reading more about developmental milestones.
The Center for Disease control (CDC) has a resource called The Act Early Campaign. On their
website you can read and print, or order free copies of the developmental milestones in
English and in Spanish.
The second is the Zero to Three Campaign. This resource is produced by the National Center
for Infants, Toddlers, and Families. The milestones are available to read or print in English or
in Spanish.
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0-3 Month Milestones
• Begins to develop a social smile • Supports upper body with arms when lying on
• Enjoys playing with other people and may cry stomach
when playing stops • Opens and shuts hands
• Becomes more expressive and communicates • Pushes down on legs when feet are placed on
more with face and body a firm surface
• Imitates some movements and facial • Brings hand to mouth
expressions • Takes swipes at dangling objects with hands
• Grasps and shakes hand toys
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3-6 Month Milestones
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6-9 Month Milestones
46
9-12 Month Milestones
Cognitive Language
• Explores objects in different ways (shaking, • Pays increasing attention to speech
banging, throwing) • Responds to simple verbal requests
• Finds hidden objects easily • Responds to “no”
• Looks at correct picture when the image is • Uses simple gestures, such as shaking head for
named “no”
• Imitates gestures • Changes tone when babbles
• Begins to use objects correctly (drinking from • Says “dada” and “mama” and directs it to them
cup, brushing hair) • Uses exclamations (“Oh-oh!”)
• Tries to imitate words
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24 Month Milestones
Cognitive Language
• Finds objects even when hidden under two or • Points to object or picture when it's named for
three covers him
• Begins to sort by shapes and colors • Recognizes names of familiar people, objects,
• Begins make-believe play and body parts
• Says several single words (by 15 to 18 months)
• Uses simple phrases
• Uses 2- to 4-word sentences
• Follows simple instructions
• Repeats words overheard in conversation
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36 Month Milestones
Cognitive Language
• Makes mechanical toys work • Follows a two-three part command
• Matches an object in her hand or room to a • Recognizes and identifies almost all common
picture in a book objects and pictures
• Plays make-believe with dolls, animals, and • Understands most sentences
people • Understands placement (on, in)
• Sorts objects by shape and color • Uses 4 to 5 word sentences
• Completes puzzles with three or four pieces • Can say name, age, and sex
• Understands concept of "two" • Uses pronouns (I, you, me, we, they) and some
plurals (cars, dogs, cats)
• Strangers can understand most of her words
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50
Appendix and Additional Resources
Included in the Appendix:
1. What do All of These People do? A list of the different professionals that may work with
a child with Autism.
2. Glossary
3. Some Extremely Reasonable Suggestions for “Typical” Parents, Family, and Teachers on
Behalf of Kids With Asperger’s Syndrome
6. Websites Resources
8. Article Summary: Evaluation of Interventions and Treatment for Learners With Autism
Spectrum Disorders
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What Do All of These People Do?
Pediatrician: This is your child’s primary care doctor. Their role is to focus on your
child’s general health care needs, screen for developmental delays, and to provide
referrals for issues that they feel need further investigation or treatment.
Developmental Pediatrician: Consults with the child’s primary care doctor and with
families about health issues, behavior problems, and managing medications.
Child Psychiatrist: Help manage medications, but also help with behavior problems
and emotional issues.
Occupational Therapist: Works toward improving fine motor skills and practical self-
help skills that will improve independent living. For children with Autism, they also
work on sensory integration and coordination of movement.
Physical Therapist: Works with fine and gross motor skills to help improve a child’s
coordination.
Other Therapists: Children also work with other therapists who provide less
traditional interventions such as art, music, or horse riding.
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Some Extremely Reasonable Suggestions for “Typical” Parents, Family, and Teachers on Behalf
of Kids With Asperger’s Syndrome
By Jennifer McIlwee Myers, Aspie-at-Large
www.Autismdigest.com November-December 2005
I was diagnosed with Asperger’s Syndrome at age 36. It was a joyful occasion—it helped me finally stop
trying to be normal. The more I learned about ASD’s (Autism Spectrum Disorders), the better I was able to
adapt myself to life in a functional and enjoyable way. It turns out that being weird is not only functional, it’s
really fun. I researched ASD’s in earnest. I interviewed parents, teachers, OT’s, and psychologists,
neurologists-you name it. What I found is that an awful lot of those well-meaning adults were busily
working “aginst the grain” of as/Autism. They were frustrated and tired too! In the hope of saving a few
parents and teachers some of that time, energy, and pain, I have come up with a list of “suggestions” for
them. These come from the heart of an Aspie who really likes the strange creatures we call “typical.”
The Suggestions:
1. Please don’t try to make us “normal.” We’d much rather be functional. It’s hard to be functional when
you have to spend all your time and energy focusing on making eye contact and not tapping your feet.
2. Please don’t overprotect, indulge, or cosset us. We already have enough social problems without
additionally learning to be spoiled and self-indulgent.
3. Don’t teach us social skills according to how you wish the world was, or even how you think it is. Look
carefully at what is really going on and teach us real world rules.
4. Don’t talk and/or act as if your life would be perfect or soooo much easier if you had a “normal” child.
We don’t thrive on knowing that we are the children you didn’t want.
5. Don’t make the mistake of thinking that teaching us typical behaviors and successful masking means we
are “cured.” Please remember that the more typical our behavior seems, the harder we are working.
What is natural, simple behavior to you is a constant intense effort for us.
6. Please don’t punish us with rewards or reward us with punishments. For those of us who find recess to
be the most stressful part of school, any action that will keep us in from recess is one we will learn to
repeat ad infinitum. Getting rewarded for good behavior with fashionable but really itchy clothing will
train us to NOT behave too well!
7. If you assiduously train us to imitate and conform to other children’s behavior, don’t be shocked if we
learn to curse, whine for popular toys, dress in ways you don’t like, and eventually drink, smoke, and
attempt to seek out sex as teenagers. Those “nice kids” you think so highly of do a lot of things you don’t
know about-or don’t you remember high school?
8. Please do give us information about Autism/Asperger’s early on at a level we can digest. We need to
know what’s going on – and we will figure out that something is “wrong” with us whether you tell us or
not.
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9. Don’t avoid a diagnosis or help for us because you are scared of us being labeled. Without that
diagnosis and appropriate support, our teachers, family, and fellow students will give us plenty of
labels – and we might just believe them if we hear them often enough.
10. Don’t force us to do things we can’t do. A forced social situation won’t teach us social skills any
more than dumping us in the middle of the Pacific Ocean will teach us to swim.
11. Don’t punish us for what other kids do. The fact that other kids tease and torture us for benign
“Autistic” behaviors doesn’t mean we need to change, it means they do. Needing to bounce or
swing for the whole recess is not morally wrong; tormenting someone for having a neurological
disability is.
12. Don’t attempt to use humiliation or public embarrassment to “teach us a lesson.” We get way too
much of that from other people, and the only lesson learned is that we can’t trust you either.
13. Do punish us (or give us “consequences,” heaven help us) when it is necessary to do so – but make
the connection between cause and effect very, very clear. We often need visual aids to understand
how our behavior can cause an unwanted result for us!!!!
14. Don’t cut us too much slack when our behavior is potentially dangerous to us. For example,
adolescent pre-stalking behavior should result in serious consequences -- because not treating such
behavior seriously when we are young can lead to problems involving law enforcement when we’re
older!
15. Don’t trust untrained camp counselors, “typical peers,” or youth pastors to be able to deal with
Asperger’s. Often their answers to our problems involve highly destructive phrases like “try harder,”
“you could do it if you really wanted to,” and “snap out of it.”
16. Don’t model one thing and teach another. If you yell or hit when you’re mad, we will too. If you
rage at us, don’t be shocked at our “Autistic rages.” And DON’T lecture us about our stims while you
smoke, tap your foot, pick at your manicure and down your third double-latte today.
17. Don’t require us to be wildly successful at something because your ego has been wounded by
having a “flawed” child. We can’t all be Temple Grandin. Remember, all honest work is noble, even
if you can’t brag about us to your friends.
18. Do spend time with our siblings, even if you need to arrange for respite care to do so. Schedule
something special for them without us along, even if it’s just lunch at a fast-food joint once a week
or so.
19. Do ask for help for yourself as needed. Take advantage of respite care when you can. Get
cognitive-behavioral counseling and/or medication when you are depressed. Don’t try to do it all
alone. Remember: it is much more important that you get a nap and a nourishing meal than that
we have a tidy house.
20. Most important: please, please, please don’t wait until we’re “cured” or “recovered” to love and
accept us. You could miss our whole lives that way.
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Diagnostic Criteria for Autistic Disorder
Source: The American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders,
Fourth Edition, Washington D.C., American Psychiatric Association, 1994.
A. A total of at least six items from (1), (2), and (3), with at least two from (1), and one each from (2)
and (3):
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3
years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or
imaginative play.
C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative
Disorder.
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Books & Websites
Can I tell You about My Asperger’s Syndrome? By Jude Welton, Jane
Telford, and Elizabeth Newson (2003)
In this book, Adam helps others understand the difficulties faced by a
child with AS; he tells them what AS is, what it feels like to have AS and
how they can help children with AS by understanding their differences
and appreciating their many talents.
Look Me in the Eye: My Life with Asperger’s by John Elder Robison (2008)
This is a story of one man’s struggle growing up with Asperger’s
Syndrome. It is a very real story that is also inspirational. The author has
become quite successful at many things. It is interesting to see the world
through his eyes.
Asperger’s Syndrome: A guide for parents and professionals By: Tony
Attwood and Lorna Wing (1998)
Tony Attwood is a world renown expert on Asperger’s Syndrome. His
guide will assist parents and professionals with the identification,
treatment and care of both children and adults with Asperger’s Syndrome.
Asperger’s What does it mean to me? By Catherine Faherty and Gary B.
Mesibov (2000)
A workbook explaining self awareness and life lessons to the youth with
high functioning Autism or Asperger's Syndrom.
Freaks, Geeks, and Asperger’s Syndrome A user guide to adolescence by
Luke Jackson (2002)
This book is a how to guide for using comic strips to teach social
interactions and conversations
The incredible 5 Point Scale by Kari Dunn Buron and Mitzi Curtis (2004)
This book uses a 5-point scale to help students understand and control
their emotional reactions to everyday events. It breaks down a given
behavior and develops a scale that identifies the problem and suggests
alternative, positive behaviors at each level of the scale.
Clay Marzo is a world class surfer who was diagnosed with Asperger’s
Syndrome. The DVD has a lot of information about Asperger’s, and shows
that people with ASD’s can accomplish many things.
Since We’re Friends: An Autism Picture Book by Celeste Shally and David
Harrington (2007)
This is a book about a boy who is trying to be a good friend to his friend
Matt who has Autism. Matt’s symptoms may be a bit glossed over, but the
point of the book is that the boy recognizes they are different, but still
cares.
Raising a Sensory Smart Child by by Lindsey Biel and Nancy Peske (2009)
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Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm
(2005)
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Oregon Summer Camps and Social Skill Groups:
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ACAP (503-649-2066)
• Autistic Children's Activity Program
• A day camp in Portland that does field trips and a variety of activities.
• Cost $1200-$3000 depending on how many days and weeks.
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Disability Compass
61
Autism Society of America
The Autism Society of America is a national organization that provides information on a
variety of issues related to Autism.
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The ARC of Oregon
The ARC of Oregon advocates for people with developmental disabilities including Autism.
ARC provides training, respite information and other help to families.
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Oregon Department of Human Services
The Oregon Department of Human Services (DHS) has local offices around the state for
Developmental Disability Services (DDS). They are usually located in the county’s Mental
Health Department.
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Swindell’s Child Disability Resources
The Swindell Center provides information and training to families who have a child with a
disability.
Website: http://www.providence.org/oregon/programs_and_services/childcenter/e15swindells.htm
Email: [email protected]
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A Hope For Autism
A Hope For Autism Foundation, the culmination of years of research, training, and devotion to the
treatment of Autism, was founded to provide support and services scholarships to families
affected by Autism Spectrum Disorder. We believe every individual deserves the opportunity to be a
part of our community and experience the life they deserve.
Autism, a unique, lifelong disorder, affects one in 110 school age children and an untold number of
adults. Beginning in early childhood, children and adults with ASD vary in their abilities to learn,
communicate, and relate to others. An Autism Spectrum Disorder may affect only some areas of
development, or can present more pervasively: affecting all areas of development ranging from
speech and communication to building friendships. With the right intervention, Autism can be a
treatable disorder.
Applied Behavior Analysis is the only evidenced based and scientifically supported method of
treatment for individuals with ASD. A Hope For Autism Foundation provides direct scholarships to
families, professionals, and team members for ABA training, services, and support. We are the only
Foundation in the state of Oregon dedicated solely to providing necessary financial support for this
much needed intervention.
We:
• are committed to helping families and building a conscious and supportive professional
community.
• are intent on building a community of doctors, clinicians, and support staff that are the best at
what they do; helping individuals with Autism to thrive and succeed in their community.
• look forward to being a part of the larger community and working with insurance companies and
school districts to provide the most effective interventions for these individuals.
We also focus on developing a program for family support and training. We focus on using a child's
interests to motivate learning opportunities. We believe that learning should be fun as well as
effective and efficient.
Beyond all, there is hope. We look forward to having the privilege of working with your child.
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The Inclusive Child Care Program: Oregon Council on Developmental Disabilities
The Inclusive Child Care Program serves children, families, child care providers, and
communities through:
• Child care subsidies. The program coordinates subsidies that can help with costs of
accommodations or supports that are necessary for safe, healthy child care for some
children. Families may be eligible when parents are employed, students, or receiving
child care assistance through the Oregon Department of Human Services. Family income
must be less than $4,592 per month for a family of 4. Eligible children and youth may be
birth to 17 years of age and need a higher level of care and supervision.
It isn’t. Inclusive child care just means that children and youth with and without disabilities,
emotional/behavioral disorders, or special health care needs are all together in child care or
out-of-school time programs. It also means that all children and youth participate in all of
the settings, daily routines, and activities.
All child care and out-of-school time programs have the potential to be fully inclusive.
Oregon Technical Assistance Corporation (OTAC) has published: Autism an Introduction for
parents and guide to Oregon’s Human Service System 5th Edition (2005)
This resource can be downloaded from the OTAC website. If the download does not work
call OTAC and they can send you the resource.
OTAC
(503) 364-9943
www.otac.org
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Rethink Autism
Rethink Autism is a web-based program that provided on-going training and supports to
families to teach them how to provide ABA therapy at home.
The cost is about $100 per month. Below is some information from their home page:
www.rethinkAutism.com/
If your child has received an Autism diagnosis, you may have more questions than answers. How can I help my
child learn to communicate with me? Make friends? Read or write? Live independently?
Studies show that children receiving early intensive treatment make the most substantial progress. Yet an Autism
diagnosis is often followed by a long search for the right educational program and necessary treatment. rethink
Autism can help.
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Autism Speaks
Autism Speaks provides a free notebook for families who have a child who has been recently
diagnosed with Autism or Asperger’s Syndrome.
You can download the 100 day kit (notebook) at www.Autismspeaks.org, or call to request a
free 100 Day Kit.
Families whose children have been diagnosed in the last 6 months may request a
complimentary hard copy of the 100 Day Kit or the AS/HFA Tool Kit by calling 888-AUTISM2
(888-288-4762) and speaking with an Autism Response Team Coordinator.
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Oregon Education Service Districts
ESD Address Phone # Website
71
Clatsop 3194 Marine Dr., Astoria, OR 97103 503-325-2862 www.nwresd.k12.or.us
Service Center
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Washington Education Service Districts
73
Stevenson- PO Box 850 509-427-5674 www.scsd.k12.wa.us/
Carson School Stevenson, WA 98648-0850
District 303
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Therapy Research Article
The following page is the summary of a research article that was published in 2005. The
article looked at many therapies that are often used to support kids with autism. The article
reviewed many other studies that had looked at different therapies and placed the therapies
into categories based on how strong the research and the results were.
Promising Practice- which refers to the therapies that are generally accepted, but there
is not much strong, reliable date to support the therapies.
Limited Supporting Information for Practice- this category includes therapies that
have no valid research, and/or have negative research results.
For the purposes of this parent guide, there is a third category. These are the therapies that
we consider widely accepted my medical professionals
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Glossary of Autism Related Terms
Americans with Disabilities Act (ADA) is the US law that ensures rights of persons with
disabilities with regard to employment and other issues.
Applied Behavior 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.
Audiologist is a professional who diagnoses and treats individuals with hearing loss or
balance problems.
Autism Spectrum Disorders encompasses the following Disorders listed in DSM-IV: Autistic
Disorder, Asperger’s Disorder, PDD – Not Otherwise Specified, Childhood Disintegrative
Disorder, and Retts Disorder.
Casein is protein found in milk, used in forming the basis of cheese and as a food additive.
Celiac Disease 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.
Chronic Constipation is an ongoing condition of having fewer than three bowel movements
per week.
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Cognition is mental process of knowing, including aspects such as awareness, perception,
reasoning and judgment.
Cognitive Skills are any mental skills that are used in the process of acquiring knowledge;
these skills include reasoning, perception and judgment.
Compulsions 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.
Developmental Disorder refers to several disorders that affect normal development. May
affect single area of development (specific developmental disorders) or several (pervasive
developmental disorders).
Developmental Milestones skills or behaviors that most children can do by a certain age
that enable the monitoring of learning, behavior, and development.
Diagnostic and Statistical Manual the official system for classification of psychological and
psychiatric disorders published by the American Psychiatric Association.
Dyspraxia is brain’s inability to plan muscle movements and carry them out. In speech, this
term may be used to describe Apraxia.
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 quoted phrase in a way that has shared meaning, for
example, saying “carry you” to ask to be carried.
Expressive Labeling is the communication of a name for an object or person, see expressive
language.
Extended School Year (ESY) Services are provided during breaks from school, such as during
summer vacation, for students who experience substantial regression in skills during school
vacations.
Free Appropriate Public Education ( FAPE) means that education must be provided to all
children ages three to twenty-one at public expense.
Floortime a developmental intervention for children with Autism involving meeting a child
at his current developmental level, and building upon a particular set of strengths.
Fragile X is a genetic disorder that shares many of the characteristics of Autism. Individuals
may be tested for Fragile X.
General Education is a pattern of courses in multiple subjects taught to the same grade level
to deliver a well-balanced education.
Geneticist 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.
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Gestures 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.
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.
Incidental 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.
Individualized Education Plan (IEP) identifies student’s specific learning expectations, how
school will address them with appropriate services, and methods to review progress. For
students 14 & 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.
Individuals with Disabilities Education Act (IDEA) is the US law mandating the “Free and
Public Education” of all persons with disabilities between ages 3 and 21.
Least Restrictive Environment ( LRE) a 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.
Mental Retardation describes person with limitations in mental functioning that cause them
to develop more slowly than typical child. They may take longer to learn to speak, walk, and
take care of personal needs such as dressing or eating, and are likely to have trouble learning
in school. May be mild or severe.
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.
Motor function (or Motor Skills) is the ability to move and control movements.
Neurologist refers to a doctor specializing in medical problems associated with the nervous
system, specifically the brain and spinal cord.
Obsessions are persistent and intrusive repetitive thoughts. Preoccupations with specific
kinds of objects or actions may be an early sign of obsessions.
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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.
Perseveration is repetitive movement or speech, or sticking to one idea or task, that has a
compulsive quality to it.
Physical Therapy uses specially designed exercises and equipment to help patients regain or
improve their physical abilities.
Physical Therapists design and implement physical therapy programs and may work within
a hospital or clinic, in a school, or as an independent practitioner.
Pica 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
includeitems such as clay, dirt, sand, stones, pebbles, hair, feces, lead, laundry starch, vinyl
gloves, plastic, erasers, ice, fingernails, paper, paint chips, coal, chalk, wood, plaster, light
bulbs, needles, string, cigarette butts, wire, and burnt matches.
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Pivotal Response Treatment (PRT) therapeutic teaching method using incidental teaching
opportunities to target and modify key behaviors.
Receptive Language the ability to comprehend words and sentences. Begins as early as
birth and increases with each stage in development. By 12 months a child begins to
understand words and responds to his 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.
Respite Care 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.
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 selfcontrol,
but regulatory activities take place more or less constantly to allow us to participate in
society, work, & family life. Self-control is a conscious activity.
Sensory Defensiveness 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 Integration is the way the brain processes sensory stimulation or sensation from the
body & then translates that information into specific, planned, coordinated motor activity.
Sleep Hygiene a set of practices, habits & environmental factors critically important for
sound sleep, such as minimizing noise, light & temperature extremes & avoiding naps &
caffeine.
Social Reciprocity back-and-forth flow of social interaction. How behavior of one person
influences & is influenced by behavior of another & vice versa.
Social Stories, developed by Carol Gray, are simple stories that describe social events &
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
understanding 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 & financial needs of families &
patients. Social workers often help families & patients obtain the services they have been
prescribed.
Speech & Language 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.
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Stereotyped Behaviors 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
objects.
Stim, or “self-stimulation” behaviors that stimulate ones senses. Some “stims” may serve a
regulatory function (calming, increasing concentration, or shutting out an overwhelming
sound).
Symbolic Play is where children pretend to do things & to be something or someone else.
Typically develops between the ages of 2 & 3 years. Also called make believe, or pretend play.
Syndrome is a set of signs & symptoms that collectively define or characterize a disease,
Disorder or condition.
Tactile Defensiveness is a strong negative response to a sensation that would not ordinarily
be upsetting, such as touching something sticky or gooey or the feeling of
soft foods in the mouth. Specific to touch.
Typical Development (or healthy development) describes physical, mental, & social
development of a child who is acquiring or achieving skills according to expected time
frame. Child developing in a healthy way pays attention to voices, faces, & actions of others,
showing & sharing pleasure during interactions, & engaging in verbal & nonverbal back-and-
forth communication.
Verbal Behavior is a method of Applied Behavioral Analysis (ABA) for teaching children with
Autism, based on B.F. Skinner’s description of the system of language.
The above glossary is a shortened version of the glossary from: The 100 Day Kit version 2.0 by
the Autism Speaks organization. You can view the kit at: www.Autismspeaks.org
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Personal Information
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