WHO'S TO KNOW?  Disclosing Asperger Syndrome
By Dan Coulter

Your son or daughter has Asperger Syndrome.  Who do you tell?  Who do they tell?

This can be a tough decision.

There are definitely two sides to disclosure issues.  Personally, I'm in favor of being as open as possible with people who are going to have routine contact with your child - and that includes other kids.  But it's an individual and family decision.

My son, who has AS, has gone through different phases.  For much of his life, he's just wanted to fit in.  And fitting in did not include telling other kids he had a condition with a weird-sounding name that affected his mental processes.

If your child's behaviors don't isolate him from other kids, this may not be a big issue. However, if the way your child acts drives a wedge between him and other kids, he has a dilemma.  Does he keep silent about his AS and just deal with the teasing, harassment and isolation?  Or does he tell the other kids and possibly make himself an even bigger target?

In this case, the problem is that the others already know something is different.  They just don't know the reason.  So not telling them the reason doesn't help your child accomplish his goal of fitting in or making friends or getting dates.  But concerns about becoming a bigger target are real.

Kids can be unbelievably cruel.  I recently interviewed a number of teen-agers who have AS about their school experiences for a "peer awareness" video.  It's amazing how some kids with AS can have such a positive attitude when you get a glimpse of the daily assaults on their self-esteem.  Getting called a "retard" or being ignored can feel like a kick in the stomach.  And some kids endure such treatment every school day.

You can't necessarily expect to change people who have their own problems and are intentionally cruel.  But it's my experience that helping a group of kids understand a challenge or disability can improve your child's interactions with those who are not just plain mean-spirited.  And if you can get the majority in the classroom to understand enough to avoid making thoughtless comments, and a few to actually reach out and be friendly with or to stick up for your child, you may dramatically improve his or her school experience.

The disclosure decision is up to you and your child.  If you decide to disclose to a class, it helps to do some planning and preparation.  It's important to involve the school and your child's teachers.  Some parents choose to go to the class and make a presentation.  Should your child be in the room when you tell other kids about AS?  I think that sends a good message, but you need to see how your child feels about it.  Some will want to be there and some won't.  Some kids even may choose to make the presentation themselves.  Or, if standing in front of groups is not a strong point for you or your child, you may want to have a teacher, counselor or outside professional talk with the class.  Just make sure that the presenter understands Asperger Syndrome and knows how it affects your child.

Most of all, I think it's important to give the whole picture and focus on the positive.  You're not trying to get others to feel sorry for your child. You're trying to get them to see Asperger Syndrome as one of those differences we all have.  If you choose to explain some of the "different" behaviors that the class is likely to see your child exhibit, be sure to focus also on his interests and strengths.   The friendships my son has made have been largely based on interests he shared with others.

There's an interesting book by Norm Ledgin called "Asperger's and Self Esteem: Insight and Hope Through Famous Role Models."  In this book, Ledgin identifies 12 historical figures and celebrities and cites evidence of traits they had that scientists now identify with Asperger Syndrome.  Some of the people profiled include Orson Welles, Carl Sagan, Albert Einstein, Wolfgang Amadeus Mozart and folk musician John Hartford.

It's important to note that these connections with Asperger Syndrome are based on analysis and speculation and not everyone accepts this theory. Ledgin notes that "because these figures are all dead, we can never know whether all would have met the classic definition of Asperger Syndrome."  It's also important not to set up expectations that everyone with AS should exhibit some form of genius.  But, to me, the real power in the book is not that these people absolutely did or didn't have AS.  It's that these people exhibited "different" behaviors and many succeeded in spite of some real challenges with social interactions.

I think you could consider a talk to a class about Asperger Syndrome particularly successful if you help a group of kids be more open to accepting others with a range of differences - not just AS.

My son is now in college and he's much more comfortable letting people know he has AS.  Not that he feels it's necessary to tell everyone he meets.  But he's learned that when he wants to tell someone, if he's open about it and doesn't act like it's anything to hide, people are more accepting. Confidence can be a powerful tool.

My son has spent a lot of time working on understanding and using the social skills that many people take for granted.  But that's really only half the equation.  We really need to educate people so that some quirky AS behaviors don't become a gate that locks others away from the positive things  individuals with AS have to offer.

Who's to know?

It's a personal choice, but if you have Asperger Syndrome, letting the people you routinely deal with (teachers, classmates, supervisors, co-workers, etc.) know about AS and how it affects you can help them understand you, support you and appreciate you.  And you may be making the way easier for the next person they meet who has AS.

The whole world doesn't need to know specifically who has AS and who doesn't. But who should we teach generally about Asperger Syndrome and other Autism Spectrum Disorders?  Who should we show how to unlock the gate and accept some "different" behaviors to get the benefit of knowing the person inside?

Everyone.

ABOUT THE AUTHOR:  Dan Coulter is the writer/producer of the video "INTRICATE MINDS: Understanding Classmates With Asperger Syndrome" and other AS-related videos.  You can find additional articles on his website at: www.coultervideo.com.

Copyright 2005  Dan Coulter  Used by Permission.  All Rights Reserved