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
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
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
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:
Copyright 2005 Dan Coulter Used by Permission. All Rights Reserved