by Dan Coulter, Coulter Video, February 8, 2005
For more articles like this
Your son or
daughter has a disability that's not necessarily obvious to
others. 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 Asperger Syndrome, 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 physical appearance or behaviors don't isolate
him from other kids, this may not be a big issue. However, if
the way your child looks, moves or acts drives a wedge between
him and other kids, he has a dilemma. Does he keep silent about
his condition and just deal with the teasing, harassment and
isolation? Or does he tell the other kids about the
cause and possibly make himself an even bigger target?
In many cases, the other kids already know something is
different. They just may not know the reason. So not telling
them the reason probably won'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 Asperger Syndrome about their school
experiences for a "peer awareness" video. It's amazing how some
kids can have such a positive attitude when you get a glimpse of
the daily assaults on their self-esteem. Getting called a "gimp"
or "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. You have to
choose what's best for your situation. If you decide to disclose
a condition or disability 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 for this presentation? 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 your
child's condition or disability and knows how it affects your
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 your
child as a person, with one of those differences we all have. If
you choose to explain some of your child's physical
characteristics, challenges or behaviors that the class is
likely to see, 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, Sir Isaac
Albert Einstein, Wolfgang Amadeus Mozart and folk musician John
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
I think you could consider a talk to a class about a condition
or disability particularly successful if you help a group of
kids be more open to accepting others with a range of
differences - not just the one that affects your child.
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
My son has spent a lot of time working on understanding and
using the social skills that many people take for granted. Many
kids with physical challenges spend a lot of time trying to
overcome them, or at least manage them. But that's really only
half the equation. We really need to educate people so that
different appearances, actions and behaviors don't become gates
that lock others away from the positive things individuals have
Who's to know?
It's a personal choice, but if you have a disability or
condition that makes you appear "different," letting the people
you routinely deal with (teachers, classmates, supervisors,
co-workers, etc.) know about it 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 a
The whole world doesn't need to know specifically who has a
disability and who doesn't. But who should we teach generally
about disabilities and other challenges? Who should we show how
to unlock the gates and accept some "different" behaviors to get
the benefit of knowing the person inside?
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:
Dan Coulter Used by Permission. All Rights Reserved
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