Parent's personal story about Autism


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 right.


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 it is.


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.

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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.

A story from a mother who is increasingly dismayed by the notion that children like her son are somehow deficient and need to be "cured"