Q and A: Understanding Feelings
Question 2: I find that my skin hasn't toughened up as much as I would
like it too when it comes to going out in the community with my six year old
son, who has autism. I don't find it hard to tell people he has autism if he
doesn't respond to their questions. A lot of people tell him to "get down" or
"don't touch that honey" and I feel that I'm his mother and can keep him from
harming store property, etc.... How should I respond to disgusted looks or
comments from people who don't or can't begin to understand the behavior from a
child that looks so normal?
Response:
The way I look at this problem, it isn't a matter of toughening up--rather it is
about healing a broken heart as well as dealing with what other people can or
want to learn to understand about the perplexing condition we know as autism.
And “It takes time to heal a broken heart” in the words of Dan Gottlieb, Ph.D.,
the host of the NPR radio show “Voices in the Family” which originates in
Philadelphia and is carried in some other areas. You can listen to past shows at
www.whyy.org/91FM/Voices.html
Because of its invisibility autism challenges parents and
society in special ways. It is my belief that there are also special rewards
when we rise to meet the challenges as I know you are doing. My son Tariq will
be twenty this November, and there are still moments when I get a quick review
of the journey which goes like this--
Your eyes deceive you. They tell you and others that your child looks normal.
And for an instant you believe your wondrous sense of sight. Your windows onto
the world tell you what you so desperately want to believe. And then he opens
his mouth--making unintelligible sounds and flapping his hands--reality hits you
like a brick in the face. It still happens to me after all these years. It's not
so frequent and not so painful.
It's hard for parents as well as others when there are so many normal moments.
Perhaps in the supermarket there are times when you and your child blend in and
everything is fine. After all, he is just like a younger child in many respects.
I wonder if when other people notice and make their awkward comments, that isn't
like a brick in your face. Who amongst us is immune from such a reaction to a
situation that baffles us? I try to remember that whenever I am in public with
my son who looks normal one moment and very disabled the next. I like to blend
in, and I hate it when his behaviors draw attention and stares. He's too big now
for the kind of comments you hear although I remember them as if it were only
yesterday. I try to read positively into people's concern, and I tell myself
that they mean well but may be uncomfortable with what they don't understand.
And as much as I love my son, I too am uncomfortable in certain situations even
to the point where I wish we were invisible.
At other moments, I am proud of the bond we have and the love we share. Such a
roller coaster of emotions is common for parents of children with special needs.
Yours is the type of experience we discuss often in the support group I lead at
the Center for Autistic Children in Philadelphia. Some parents want to explain
to others; some do not. It's really an individual choice as we are not
responsible for other people's reactions to our children. The Autism Society of
America www.autism-society.org
tackled this problem years ago by printing up little cards for parents to give
out in situations like the ones you describe. The cards which I think are still
available explain autism for the casual observer.
Fortunately for all of us, there is an excellent new book available by Nancy
Miller, Ph.D. and her colleague from UCLA, Catherine Sammons Ph.D. “Everybody's
Different: Understanding and Changing Our Reactions to Disabilities” from
Brookes Publishing Company
www.brookespublishing.com. I wish we had this book before, but I am
glad for myself and others that we have it now.
Finally, when your child reaches school age there is a transition mentally and
emotionally for parents. I have seen this in my own experience, as well as from
the hundreds of families I have met and counseled. We are faced with accepting
the lifelong nature of our child's condition. I sense that may be what you are
saying when you relate that perhaps your skin is not tough enough yet.
Understanding and accepting differences in ourselves and our children can be a
tedious process. In the long run, however, the world is a better place as we do
so and help others to do the same. Our children with their special needs can be
our guides.
