So how and when should parents of children with AS explain the disorder? Is it always necessary to discuss it at all? To find answers to these questions, I interviewed Stephen Shore, an adult with Asperger syndrome as well as an international speaker and author.
Should Children with Asperger Syndrome Be Told About Their Diagnosis?Many children with AS are included in typical classes, and can handle a wide range of typical activities. Some parents worry that, by telling a child about their own diagnosis, they're opening the door to trouble. Might the child lean on the diagnosis when challenges appear? Might their self-esteem suffer when they hear they have a diagnosable difference?
Shore says, "I recommend that the person on the spectrum be told as early as possible. There never should be a discrete disclosure session, but it should be something that's talked about all along. I was lucky because my parents used the word autism just like any other word. By age five, I knew I had autism."
Should Parents Disclose Their Child's Asperger Syndrome to Anyone Who Doesn't Have to Know?Many children with AS appear typical much of the time. And there's always the possibility that a coach, club leader or other adult will have reservations about including a child with a disability. After all, most adults have very little experience with AS, and may feel they can't offer appropriate support. Should a parent explain their child's AS up front? Or should they take a wait-and-see approach?
Says Shore, "You have to consider disclosure when the effect of autism significantly impacts a situation or relationship and there's a need for better mutual understanding."
For example, if a child is taking part in a karate class, he may do well most of the time, so it might be useful in that case to consider a partial disclosure. Says Shore, "A partial disclosure might be to say - 'Joey is someone who really depends on structure, so if you're going to make a change it would help if you tell him before class; maybe even write it down. When things are unpredictable, he gets anxious and might have a meltdown.' That way you can address the issue without the diagnosis."
What's The Best Technique to Use When Disclosing a Diagnosis of Asperger Syndrome?Shore developed a four-step process for disclosing AS, which he has found effective in a number of settings. In essence, it's a tool for placing a child's AS in context, and helping others to understand that AS is not a "handicap," but rather a collection of strengths and challenges. Through accommodations and support, people with AS can not only succeed but can even thrive.
- Start by delineating your child's strengths and challenges. Use the word "challenges" instead of "weaknesses" because you can address challenges. If Joey's been in a class for a little while, a parent might say "Joey is very good at following rules. When there's a change in the schedule, though, you'll see Joey get a little anxious."
- Try to find a strength that your child uses to accommodate for a challenge. For example, during lecture parts of class, your child might use a computer to take notes. A parent might say "Joey finds that writing by hand is very tough, so this is how he takes notes."
- Talk about other people's characteristics to place your child in a broader context. A parent might say, "Joey has these strengths; other people have other strengths. We all try to build on our strengths to lead to productive lives."
- Lastly, bring out the label. Explain that AS is a set of traits, strengths and challenges, and that doctors and scientists have identified these characteristics as Asperger syndrome.