Autism and Asperger Articles, Bill Stillman, Award-Winning Author

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Demystifying Autism From The Inside Out

What's All The Confusion About Autism?

By William Stillman

There’s a bird loose in my neighborhood. That may not sound extraordinary but this is no ordinary bird. It’s the size of a poodle with an iridescent red breast, an amber-colored head, and plumage of assorted blue-green hues. It showed up quite unexpectedly last week, and now roosts in a bountiful willow near a small running stream within walking distance of my home. Those neighbors who have noticed its presence openly ponder its existence—Is it domesticated or wild? A foreign pheasant? Or an exotic rooster? One man took its picture to send to his son for identification. No one knows for certain exactly what it is or how it got there. Those who see it admire its rare appearance from afar. I’m hoping no one tries to harm it or whisk it away somewhere to be poked and prodded. It seems content and blissfully unaware of the minor controversy it’s caused.

It occurred to me that autism is much like my neighborhood’s displaced avian: something that escapes singular definition; something unique, mysterious even; something in jeopardy of being examined in calculating and clinical ways; and something open to broad interpretation—if it’s even recognized at all. Imagine being the parent of a child newly diagnosed with autism, and feeling an overwhelming mix of similar thoughts, feelings and emotions. Not only might you be grieving the loss of the child you had envisioned your son or daughter may become, it now becomes apparent that the vision requires permanent alteration in ways previously unexpected and inexperienced. To suggest that this is the precipice of confusion would be understating the obvious for countless families who are finding themselves in these circumstances every day.

The confusion about autism stems from the very sector that purports to serve it. Why? Because no one in autism can seem to agree on much of anything, from what causes it in the first place to programs, treatments and interventions. Let’s face it, autism is an industry. It’s a multi-billion-dollar industry. Everyone’s coming at it from a million different directions because they can. Just like the unusual bird, autism is wide open to argument and debate over its very being and what exactly to do about it. And—despite the contentions of some—not only is there no cure for autism, there never will be. Autism has become the “new” cancer—it is a burgeoning industry, still in its infancy, upon which thousands depend for their livelihood (yes, including myself). And it is here to stay in perpetuity. Think about it like this: In the many years that Jerry Lewis has hosted an annual MD telethon, are we really any closer to “curing” Muscular Dystrophy?

On a recent autism consultation, I surmised that one young four-year-old experienced proprioception, that sense of being disconnected from one’s own trunk and limbs in space. One of my recommendations was that the family should engage the boy (and his brother, too) by moving in water to awaken those dormant neural pathways and have fun like two young brothers should over summer vacation. Mom’s response was to immediately lament the discontinuation of funds for aqua-therapy—I thought, “Wait a minute! Who said anything about “aqua-therapy?” I was talking about finding a community pool, the YMCA, a plastic wading pool in the backyard—even doing frog-kicks in the bathtub. Do you see the difference in how the autism industry has conditioned many parents to think?

Frankly, I’m weary of hearing about how exceptionally costly it is to raise a child with autism or that the more therapy and programming you bombard a kid with, the better off they’ll be. Young parents of kids newly diagnosed are becoming smart about autism advocacy. They are savvy enough to do their own online research. They’re connecting to other parents via Internet message boards, listservs, and chat rooms—comparing and contrasting. They’re getting second and third opinions about options, and they’re challenging an antiquated service system that was never designed or intended to address the tremendous influx of little people with a new and different way of being. Not wrong…not even bad, just different. This is progress! I’ve been in this field for over 20 years; anytime I’ve ever seen positive, proactive change occur (such as legislation), it’s been because of passionate parents dedicated to bucking the system, demanding that the system grease their squeaky wheels now, not yesterday. And you know what? It works.

Kids are kids, and children with autism are no exception. Please don’t misquote me—I’m not suggesting we do nothing, I’m saying how we do what we do with our children is what makes the difference. Naturally, embedded within the flow of everyday, typical activities that make it fun and interesting to learn and play. (Ultimately, it’s cost effective too!) Instead of working on them, let’s work with them—and their families who love and adore them—to clear up the confusion about autism. In a way, it’s a lot like my local rooster or parrot or whatever the heck it is. While I may not know precisely what it is, the important thing is I know it’s still only a bird. And isn’t that really all that matters?

© 2008, William Stillman

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