How to Explain Your Child's High Functioning Autism

Mild Autism Often Requires an Explanation

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In May, 2013, Asperger syndrome Asperger syndrome (AS) was removed from the diagnostic literature. People who were once diagnosed with AS will now receive an autism spectrum diagnosis. But Asperger syndrome is still understood by many people to mean high functioning or mild autism. The problem is that "high functioning or mild" autism can hard to describe or understand. That means it can be hard to explain it -- to your child or to the people in his life.

What's So Confusing About High Functioning Autism?

People with high functioning autism may appear perfectly typical in many situations. Then the situation may change, and symptoms emerge. Repetitive talking, pacing, or rocking can be calming to the child with mild autism, but confusing or even upsetting to people who don't know about or understand it. And even mild autism can lead to anger, anxiety or even tantrums when the needs of the child aren't addressed.

So how and when should parents of children with  high functioning autism explain the disorder? Is it always necessary to discuss it at all? Stephen Shore, an adult with high functioning autism as well as an international speaker and author, shares his thoughts.

Should Children with High Functioning Autism Be Told About Their Diagnosis?

Many children with high functioning autism 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 Autism to Anyone Who Doesn't Have to Know?

Many children with high functioning autism 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 autism, and may feel they can't offer appropriate support. Should a parent explain their child's autism 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 High Functioning Autism?

Shore developed a four-step process for disclosing high functioning autism, which he has found effective in a number of settings. In essence, it's a tool for placing a child's autism in context, and helping others to understand that autism is not necessarily a "handicap," but rather a collection of strengths and challenges. Through accommodations and support, people with autism can not only succeed but can even thrive.

  1. 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."
  2. 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."
  3. 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."
  4. Lastly, bring out the label. Explain that high functioning autism includes a set of traits, strengths and challenges.

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