Explaining Autism
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The Autistic Spectrum

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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.

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?
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.
Gray, C. (1996). Pictures of me. Jenison, MI: Jenison Public Schools. (www.thegraycenter.org)
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.

The Sibling Support Project of The Arc of the United States

The Sibling Support Project, believing that disabilities, illness, and mental health issues affect the lives of all family members, seeks to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents' and providers' understanding of sibling issues.

Our mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents' and providers' awareness of siblings' unique, lifelong, and ever-changing concerns through workshops, websites, and written materials.

Website link:  http://www.thearc.org/siblingsupport/welcome

Snappy Answers to Annoying Questions

If you're a parent with a child on the spectrum, you've probably responded to the same annoying remarks and questions a thousand times. Here's a handy list of responses that...you'll probably never use out loud (but are fun to imagine using)!

1) He can’t be autistic -- he can talk! (or make eye contact, smile, engage)
And yet, amazingly, he’s still autistic! Y’see, autism is a spectrum disorder, and that means …

2) Oh, she must be SO good at math! (or science or music)

Actually, her great talent is in memorizing and reciting lines from Sponge Bob videos! (Or those annoying Thomas the Tank Engine songs!)

3) All he needs is more discipline, and he’ll get the message.

Yup, it’s true -- if you give a child enough time outs, he’ll just stop being autistic. And if I speak French to you loudly enough, you’ll become fluent!

4) You poor thing, it must be so upsetting to have a child with a disability.

Yes, it can be hard. And pity really helps me to get through the day and feel better about myself and my child. So…thanks so much!

5) Will he be able to go to college (or get married or hold down a job)?

Hm. Good question. By the way, has your daughter’s divorce been finalized yet? And I’m so sorry to hear that your son was recently laid off from his job…

6) I have a friend whose child was autistic, and she cured him!

Wow! So I guess she’s enjoying the millions she made after figuring out how to cure autism? I bet her second home is a yacht!

7) If she can’t behave properly, you shouldn’t BRING her to the grocery store!

Wow -- that would be great. Should I fax you my grocery list, or send it by email? I’ll really enjoy the delivery service!

8) We can’t include him in typical classes, it wouldn’t be fair to the other kids.

Hm, that’s an interesting perspective. So I guess you have a pretty big endowment to pay for all the law suits? That must be great!

9) We can’t accept her at our school because she doesn’t have a learning disability

Ohhhh… what a shame! Oh, wait, look, she’s suddenly developed dyslexia! Can she come to your school now?

10) You should make more time for yourself!

You’re so right! So will you be babysitting tonight or tomorrow night?