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.” You can find
additional articles on his website at: www.coultervideo.com.
Copyright 2005 Dan
Coulter All Rights Reserved Used By Permission
