Build Your Own Life: A Self-Help Guide For Individuals With Asperger Syndrome
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All children need to be understood and respected.
Library Kaitlin Atkinson Family Resource Library
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. 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. Certainly, the possibility of problems occurring is more likely when someone is not told about their disability and given the support they need.
Not understanding others or social situations for many leads to poor interactions with others and results in ridicule and isolation. 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.
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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. 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 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. 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.
There is no exact age or time that is correct to tell a child about their diagnosis. Starting too early can cause confusion.
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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, 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.
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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. 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.
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.
If given a choice, waiting until a negative experience occurs to share the information is probably not the best option. Autism spectrum disorders are complex. Everyone with a diagnosis is unique.
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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.
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, ; Jackson, 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.
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. 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.
When to Tell?
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.
Think about it. New topics are frequently added and lists are updated as we get new materials. Reach us directly at or by email at library cheo. Our library was made possible thanks to money raised by the Atkinson family and their friends and colleagues in support of Kaitlin. Kaitlin passed away at the age of three of a rare lung disease. We continue to maintain our library thanks to generous donations from our community. Close Alert Banner.
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