Disability Information for Someone who has Autism
Contributed
by Beverly Vicker
You and over 500,000 other individuals in the United States have
a developmental disability which is called "autism."Having this disability means that you are still like everyone else in
most ways.
* You eat and sleep.
*
You brush your teeth.
* You wear favorite clothes.
* You go places such as the
grocery store.
* You visit your doctor for a check up.
* You enjoy special activities
like listening to music or working on the computer.
* You learn to do new things.
Having the disability of autism, however, also means that your
body and your brain sometimes work differently from that of other people. As a result, you may do or experience things differently
from people who do not have autism.
* You may hear sounds that are louder or bothersome
only to you.
* You may like to spend long periods of time watching unusual things such as the spinning
of a fan or movements made with your fingers.
* You may rock your body to help yourself relax when you
feel nervous.
* You may get quite upset when people talk too fast and you do not understand their message.
(You may forget that you could ask people to talk more slowly.)
* You may like to make lists of unusual
things that are of major importance to you. (Over and over again you may make up or write these same lists.)
* You may have a hard time making friends. (Keeping or being a best friend for several years is even harder.)
* You may have difficulty figuring out how other people feel and why they act a certain way. (Others seem to interpret events
and your behavior differently than you do.)
* You may like to talk about topics that other people do
not seem to find interesting. (These topics might include things such as mileage between cities, or air conditioners.)
* You may feel more comfortable when things always stay the same. (Of course, things don't stay the same.)
Colds and measles are diseases. Autism is different. Autism is
a developmental disability and its effects will always be with you. People with autism live a normal life span. Hopefully,
you will live to be 70 years old or more.
How did you become autistic?
No one knows exactly why your brain developed slightly differently.
The differences probably occurred while your mom was still pregnant with you, that is, before you were born. She did not do
anything wrong; neither did anyone else. The differences just happened. The differences in your brain influence the way you
do and understand some things. People identify a certain set of behaviors as autism.
How can you help yourself?
You can be successful at home, school, or work. You may need to
use schedules, rule books, communication boards, relaxation and exercise programs, or medication to help you cope or learn
better. Many people care about you. They will be glad to help you become a happy person who just happens to have a developmental
disability called autism.
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Getting Started: Introducing Your Child to His or Her Diagnosis
of Autism or Asperger Syndrome ~ Marci Wheeler,
Social Worker
Who, what, when, where, how, and why are all important questions
parents ask themselves when problem solving and making decisions about issues in the lives of their children. Discussing an
autism or Asperger Syndrome diagnosis with your child is a very important issue and one for which many parents seek advice.
This brief article will focus on aspects of explaining your child’s diagnosis to him or her, and about resources that
can assist and guide you.
Why Tell?
“Why tell my child about their diagnosis of an autism spectrum
disorder?” will probably be the first question parents ask themselves. Parents go through a range of emotions when given
their child’s diagnosis and hopefully find support as they begin their journey with this new information about their
child. Sometimes siblings, grandparents, and other family members go through a variety of emotions and stages of dealing with
the autism spectrum diagnosis of a family member. Isn’t it reasonable to consider that the child themselves should also
be given information about their diagnosis and support for understanding and coping with this new information? All children
need to be understood and respected. At some point, people who are successful have learned who they are, and accept and use
that information to help themselves become the best they can be in life. Shouldn’t children with an autism spectrum
diagnosis have the chance to understand and accept themselves by being given information about their disability?
Parents may fear a number of things if they tell their children
(and sometimes others) about their child’s disability. For example, they may fear that their child will not understand,
that their child may lose some of his/her options in life, that their child will become angry or depressed because they have
a disability, that the child (or others) will use the disability as an excuse for why they can not do something, or even that
the child will think of themselves (or others will think of the child) as a complete failure with no hope for a positive future.
These problems may or may not happen, but can be dealt with if needed. Most of these problems and others may also surface
whether or not the child and others are told of the diagnosis. Shouldn’t all involved, the child included, have important
information about autism or Asperger Syndrome since the diagnosis will affect various aspects of the child’s life?
Certainly, the possibility of problems occurring is more likely
when someone is not told about their disability and given the support they need. Consider the stories told by many individuals
with an autism spectrum diagnosis who were not told, and/or not diagnosed until they were adults. Not understanding others
or social situations for many leads to poor interactions with others and results in ridicule and isolation. Being told, “You
should know better” or “stop being so stupid” and not having a clue what they did or how to “fix”
or change the situation lead to frustration and confusion. Many adults share how they felt, they were seen as a major disappointment
and failure to their families and others, but had no clue why they failed or how to do better. Over time, the end result can
be low self esteem and/or self acceptance problems among other issues. Many of these individuals feel that with the correct
information about their diagnosis and what their differences are they now have a better chance of being successful.
Your child may know that s/he is different, but like all children
at certain developmental stages they come to the wrong conclusion about their perceived differences. They may even wonder
if they have a terminal illness and are going to die. They see doctors and therapists and go for treatments, but are not told
why. Even the child or adult who does not ask and/or verbally express concern about being different may still be thinking
those thoughts. Even children with autism spectrum disorders, like all children, can sense the frustration and confusion of
others and make wrong assumptions about the cause of the turmoil around them.
If the child is under 18 years old, it is the parent’s decision
whether they share information about the diagnosis with their child. It can seem like an overwhelming task, especially when
day-to-day issues consume all the time and energy of a family. It may be helpful to discuss your concerns and possible options
for disclosure with others that know your child well, other parents of children on the autism spectrum, and even individuals
with an autism spectrum disorder who have been told about
their diagnosis.
When to Tell?
There is no exact age or time that is correct to tell a child about
their diagnosis. A child’s personality, abilities and social awareness are all factors to consider in determining when
a child is ready for information about their diagnosis. Starting too early can cause confusion. If older when told, they may
be extremely sensitive to any suggestion that they are different. You can look for the presence of certain signs that the
child is ready for information. Some children will actually ask, “What is wrong with me?,” “Why can’t
I be like everybody else?,” “Why can’t I _____?,” or even “What is wrong with everyone?”
These types of questions are certainly a clear indication that they need some information about their diagnosis. Some children,
however, may have similar thoughts and not be able to express them well.
Some children do not get a diagnosis until they are in their teens
or older. Frequently those who are diagnosed later have had some bad experiences that can influence the decision of when to
share information with them about their diagnosis. They may not be emotionally ready to cope with the new information because
of the toll the bad experiences have taken on their self-esteem and confidence. They may be very sensitive to any information
that suggests that they are different. Thus they are not ready for any diagnostic information. On the other hand, an older
child may already know about a previous diagnosis such as Attention Deficit Disorder, Conduct Disorder, and/or an emotional
disorder of some kind. Because of this history with another label or diagnosis, it may be an appropriate time to share the
diagnosis and some concrete information about the disability.
Many families have found that setting a positive tone about each
family member’s uniqueness is a wonderful starting place. A positive attitude about differences can be established if
you start as early as possible, and before the diagnosis is mentioned. Everyone is in fact unique with their own likes and
dislikes, strengths and weaknesses, and physical characteristics. Differences are discussed in a matter of fact manner as
soon as the child or others their age understand simple concrete examples of differences. With this approach, it is more likely
that differences, whatever they are, can be a neutral or even fun concept. Matter of fact statements such as “Mommy
has glasses and Daddy does not have glasses” or “Bobby likes to play ball and you like to read books” are
examples. The ongoing use of positive concrete examples of contrasts among familiar people can make it easier to talk about
other differences related to your child’s diagnosis with him or her.
Many adults with an autism spectrum disorder express the view that
children should be given some information before they hear it from someone else and/or overhear or see information that they
sense is about them. A child may have the view that people do not like them and/or that they are always in trouble, but do
not know why. If given a choice, waiting until a negative experience occurs to share the information is probably not the best
option.
What/How to Tell?
Autism spectrum disorders are complex. Everyone with a diagnosis
is unique. It is important that the process of explaining an autism spectrum diagnosis to a child is individualized and meaningful
to them. A child should not be given too much information. It can be hard to decide what and how much information to begin
with. If the child has asked questions, it will give you a place to start. Make sure that you understand what they are asking.
Recall that it is easy to misinterpret the meaning of their words.
Remember your child’s ability to process information and
try to decide on what and how to tell. For those children who have a keen interest in their diagnosis and those whose reading
ability is good, there are currently a few books written by children with an autism spectrum diagnosis that may be of interest
to them (Hall, 2001; Jackson, 2003).
There are also many more books being written by adults with an
autism spectrum diagnosis. Some of these books are meant to be read by any interested persons, but a few are meant to be read
by others with a diagnosis of an autism spectrum disorder. The author with an autism spectrum diagnosis is reaching out to
others with a diagnosis by sharing experiences, sharing tips on life’s lessons, and helping the reader feel that they
are not alone in the journey of life (Gerland, 2000; Newport, 2001; Willey,1999; Lawson, 2003).
Most children may need minimal information to start. More information
can be added over time. Be as positive as possible. Your positive attitude and the manner in which you convey the information
is important. To make what you discuss with your child meaningful, you can begin by talking about any questions that s/he
has asked. You may want to write down key points and tell him or her that others with this diagnosis/disability also have
some of the same questions and experiences. Then you could ask if they would like to find more information by reading books,
watching videos, and/or by talking with other people. If asking your child if they want information is likely to get a “no”
response you may choose to not ask, but tell them that you will be looking for information and would like to share it with
them. Let them know they can ask any question they want at any time they want.
Frequently when individuals with an autism spectrum diagnosis have
an opportunity to meet others with a diagnosis, they find it is an eye opening and very rewarding experience. Individuals
with an autism spectrum diagnosis can sometimes better understand themselves and the world by interacting with others who
have an autism spectrum diagnosis. Interacting with others on the autism spectrum can help individuals realize there are other
people that experience the world the way they do, and that they are not the only one.
There are various possibilities for “meeting” others
on the spectrum. There are a few camps around the country that offer various programs specifically for those on the autism
spectrum. There is the MAAP Services for the Autism Spectrum yearly conference and the MAAP newsletter which frequently publishes
letters poems and other contributions from individuals of all ages with an autism spectrum diagnosis. There are also various
listserv groups on the internet, some hosted by individuals with an autism spectrum diagnosis. Carol Gray’s Pen Pal
Registry is a project that helps school-aged students with an autism spectrum diagnosis get connected with others. This interest
in connecting with people is something most of us can relate to, especially if you’ve been in a foreign country for
very long! Think about it.
Currently, there are a few workbooks that provide a structured
guide for the process of telling a child with an autism spectrum diagnosis about their disability (Gray, 1996; Faherty, 2000;
Vermeulen, 2000). The workbook format is designed to provide activities that help organize information about an autism spectrum
diagnosis as well as making the information more child specific and concrete. The different lessons suggest how the information
is shared with the child. The worksheets can be completed together by the child and a trusted adult. In many cases they can
also be modified for the different ages and functioning levels of the child who would be using the materials.
Who Tells/Where to Tell?
Certainly circumstances vary from family to family. If your child
is asking questions don’t put off answering them. You should be forthcoming and not suggest talking about it later.
Not providing an answer could increase the child’s anxiety and make the topic and information more mysterious.
For many families, using a knowledgeable professional to begin
the disclosure process instead of a family member or a friend of the family might be the best option. Having a professional
involved, at least in the beginning stages of disclosure, leaves the role of support and comfort to the family and those closest
to the child. For someone with an autism spectrum disorder, it can be especially hard to seek comfort from someone who gives
you news that can be troubling and confusing. Having a professional whose role is clearly to discuss information about the
child’s diagnosis and how the disability is affecting his/her life can make it easier for family members to be seen
by the child as supportive. The professional discussing information with the child about his/her disability can also help
the parents understand the child’s reaction and provide suggestions for supporting their child. Having a professional
involved also allows the use of a location outside of the family home for beginning this process.
Explaining an autism spectrum diagnosis to an individual can not
be done in one or two encounters. The individual needs time to assimilate the new information about him/herself at their own
pace. It may take weeks or months before the child initiates comments or asks questions about the new information. The process
of explaining an autism spectrum diagnosis is ongoing. Making the information meaningful from the child’s point of view
will greatly enhance the learning process. A positive focus helps maintain self esteem and an effective atmosphere for learning.
There are materials available to help this learning process and hopefully you have others that know your child who can help
support you and your child in this process. Now, is it time for you to get started?
Resources
Faherty, C. (2000). What does it mean to be me? A workbook explaining
self-awareness and life lessons to the child or youth with high-functioning autism or Aspergers. Arlington, TX: Future Horizons,
Inc.
Gerland, G. (2000). Finding out about Asperger Syndrome, high functioning
autism and PDD. Philadelphia, PA: Jessica Kingsley Publishers, Ltd.
Hall, K. (2001). Asperger Syndrome, the universe and everything.
Philadelphia, PA: Jessica Kinsley Publishers Ltd.
Jackson, L. (2003). Freaks, geeks and Asperger Syndrome: A user
guide to adolescence. Philadelphia, PA: Jessica Kingsley Publishers Ltd.
Lawson, W. (2003). Build your own life: A self-help guide for individuals
with Asperger syndrome. Philadelphia, PA: Jessica Kingsley Publishers Ltd.
Newport, J. (2001). Your life is not a label. Arlington, TX: Future
Horizons, Inc.
Vermeulen, P. (2000). I am special: Introducing children and young
people to their autistic spectrum disorder. Philadelphia, PA: Jessica Kingsley Publishers Ltd.
Vicker, B. (2003). Disability information for someone who has an
Autism Spectrum Disorder. Bloomington, IN: Indiana Resource Center for Autism
Willey, L.H. (1999). Pretending to be normal: Living with Asperger
Syndrome. Philadelphia, PA: Jessica Kingsley Publishers, Ltd.
