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Kim Stagliano Headshot

The Boys on the Bus

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My kids get door-to-door pickup service to their public schools. It's one of the "perks" of having autism. Remember the old jokes about riding the "short bus"? Not so funny anymore. On one of the two buses that stop at my house, I see three boys in the windows. Boy #1 is a good looking kid. He also has the telltale facial traits of Down syndrome. He sits tall, alert, and looks out the window at the world. When I wave to him he returns the gesture. His smile could light up a Broadway stage. He greets my daughter as she mounts the stairs. I call him "The Mayor."

Boys #2 and 3 are typical looking kids, blond, also handsome. They sit hunched over with their faces contorted, eyes squeezed shut and their fingers in their ears, blocking out the world as if in pain. If they happen to glance at me, they cringe and turn away instantly. (I haven't always had that affect on boys, in case you're wondering.) Boys #2 and 3 have autism.

You simply can't mistake their autism for anything else. It doesn't look like intellectual disabilities, DS, cerebral palsy, or any other category of disability. And yet the drums are beating in the national media (again) to tell you that there is no autism epidemic, simply better diagnosis. Or to promote this offensive explanation for the skyrocketing numbers of kids with autism: parents clamor for the diagnosis in order to get school services. Sure, blame the greedy parents! "I'll take reading, writing, 'rithmatic, a one-on-one aide, OT and Speech and a couple of those naked lady tees please."

In my household, autism is an epidemic. We're the New England Patriots of autism. 3 and "Oh!" (Our three daughters have autism.)

Along with telling us there is no epidemic of autism, a major push is on for two pediatric autism screenings by age two. That confuses the heck out of me. Doctors are already so good at diagnosis that we've gone from CDC stats of 1 in 10,000 to 1 in 150 in twenty five years. Is there a prize if we get to 1 in 50 kids?

I'm not sure the pediatricians are ready to take on the "two by two" challenge. They have not been trained in the neurobiological symptoms of autism. After all, autism is classified as a psychiatric/behavioral disorder, even in 2007. I asked hundreds of parents how helpful their pediatrician had been as they sought answer for their kids. Their answers were disheartening. The majority said that their pediatrician was an impediment to getting a diagnosis.

For instance, when a parent expressed concern that her child had regressed in speech and started chewing his clothing voraciously, "There's nothing wrong with him. He's just not a dummy, like most kids. He's worried about the world." To the Mother whose child couldn't sit up at 12 months, "She's a late bloomer." Another gem, "Do you see the way his eyes follow this block? That proves he doesn't have autism." To a mother whose child wasn't clapping by 12 months, "If he does have autism there's nothing you can do about it."

Here's my personal favorite. "I've never heard of a family with more than one child with autism." That's what my pediatrician told me in 1998 when I expressed concerns about my second child's lack of speech. He was in his mid-forties and affiliated with Children's Hospital of Philadelphia, one of the most respected hospitals in the nation.

I believe my old pediatrician. I'm sure he had never run across a family like mine. Because I don't think we existed. The epidemic is real. It's here. The faces of those boys on the bus tell me so.

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