'NORMAL' SHOULDN'T BE THE
ONLY ACCEPTABLE REALM
By Sarah Smith Nessel
The Kansas City Star
Sun, Feb. 11, 2007
As the mother of a child on the autism
spectrum, I'm becoming increasingly dismayed by the notion that
children like my son are somehow deficient and need to be "cured."
I realize I'm stepping into a minefield here. A diagnosis
of Autism or one
of its related disorders can be a wrenching event for a family,
particularly if the child is so severely affected that he or she
is deemed unlikely to ever speak, laugh or connect with another
person in any meaningful way.
But for many of us with less-severely affected
children, the "tragedy" of Autism simply isn't. In our
current culture of pathology, children who 50 years ago would have
just been considered a bit odd, or loners, now have a diagnosis,
a therapy team, endless rounds of assessments, a mound of county
and school district education plan paperwork and, all too often,
a pile of prescription medications.
Certainly, children on the autism spectrum have
different needs than typical children. And, for profoundly affected
children, those needs may involve fairly intensive treatment.But
where is the line between helping a child connect
with the outside world and shattering his inner world? Try asking
an autistic adult. With a growing presence on Internet forums devoted
to Autism, they're not hard to find.
But if you're a member of the cure-at-any-cost
crowd, brace yourself.
In essays ranging from the quietly eloquent to
the explosively outraged, autistic teens and adults are speaking
out against the prevailing attitude that their personality and behavioral
traits constitute a disease that needs to be cured. And they're
Here's what's "wrong" with my child:
He plays alone and can become quite anxious around other children.
He reverses his pronouns, calling himself "you" and other
people "me." He'll chatter to himself all day, but he
can't initiate or maintain a conversation with another person. His
speech is mostly echolalic - he simply repeats what he's heard.
He's a bit clumsy. He has very little capacity for imagination or
"pretend" play. He'll sometimes take himself for a spin
- around and around and around. He develops intense fascinations
with ordinary objects, including, unfortunately, fire alarms. He
lines up toys and household objects. A lot.
That's pretty much it. Oh - and he knew his entire
alphabet at 18 months, was beginning to read by his second birthday,
could write soon thereafter and absolutely loves spelling.
In our aforementioned culture of pathology, even
this is a problem. And, of course, it has a label: hyperlexia- the
opposite of dyslexia. Only in this case, the opposite of a disability
isn't an ability. It's a common "symptom" of - here's
another label - Pervasive
Developmental Disorder/Not Otherwise Specified. That's his official
diagnosis. If it sounds a bit alarmist and vague, that's because
He's always been an unusually happy and giggly
child, only managing about one tantrum every six months. He gets
along quite well with adults and loves being tickled. At three,
he's beginning to get interested in math - having long ago grown
bored with simply counting things, he wants to learn addition and
subtraction. I'm sure there's a label for that, too, along with
a course of treatment and a long list of therapy
programs recommended by people with a financial stake in those
programs, but I'm not looking it up. And please don't e-mail me
with information about it. I'm not interested.
Will I be more interested, though, when he gets
old enough to feel the pain of being on the losing end of playground
politics? What about adolescence, a time that is emotionally rocky
under even the best of circumstances? How will he cope? I have no
idea what lies ahead. And if he were "normal"? I'd have
no idea then, either.
But somehow, I doubt that I will regret giving
him a childhood that involves more play time than "program"
time.If you think my concerns don't apply to you or to anyone you
know, you might want to think again. Last week, the Centers for
Disease Control and Prevention revised upward its estimate of the
prevalence of Autism to 1 in 150 American children.
If that were accurate, my neighborhood statistically
would be home to more than 600 children, since, including my son,
there are at least four autism-spectrum kids within three blocks
of my house. The school district I live in, Blue Valley, is said
to have a rate of Autism Spectrum Disorders that's twice the national
average. And if the demographic trend of later-in-life childbearing
continues (Autism has been strongly linked to the age of the parents
- particularly the father - at the time of conception), more and
more parents will face decisions about how best to raise their autistic
children.For my part, I'm done listening to people who think I should
try to hammer my square-peg child into the round hole of "normal."
Normal is simply not in his future.
No, this does not mean I'm pulling him out of
the wonderful special-education preschool where devoted and amazingly
patient teachers and therapists, along with "peer models"
his age, are giving him opportunities that I could never give him
at home. And it doesn't mean I'm not getting a little additional
therapy for him to help him learn how to converse.
After all, someday I want to be able to sit down
with him and talk about why I love him just they way he is.
Click here to go to the
home page of this website: www.autism-help.org
to go to the Personal Stories page
Copyright on this article is held by The Kansas City Star. This
story is reprinted with the permission of the author Sarah Smith
Nessel who is a copy editor for The Star.