Tuesday, May 04, 2010

My spidy sense is tingling--ouch!

"When I was little, I convinced my brother that I had superpowers. Why else would I be able to hear what our mother was doing upstairs when we were downstairs? Why not say that the reason fluorescent bulbs made me dizzy was that I was so sensitive to light?...

Having Asperger's is like having the volume of life at full blast all the time. It's like a permanent hangover....All those little autistic kids you see smacking their heads against walls? They're not doing it because they're mental. They're doing it because the rest of the world is so loud is actually hurts, and they're trying to make it all go away....

Nobody ever asks Superman if X-ray vision is a drag; if it gets old looking into brick buildings and seeing guys beat their wives or lonely women getting wasted or losers surfing porn sites. Nobody ever asks Spider-Man if he gets vertigo. If their superpowers are anything like mine, it's no wonder they're always putting themselves in harm's way. They're probably hoping for a quick death" (words of the character Jacob in Jodi Picoult's House Rules).

The sensory "stuff" of autism spectrum disorders has to be one of the hardest part to handle. And the hardest to understand.

He looks like he can't hear you, when in fact he might be hearing you, the ceiling fan, the fridge, the dog on the sidewalk, and the downstairs TV all at once. He's focusing on the fan and blocking out the rest so he doesn't go nuts. I used to think K. was running away and laughing out of defiance, when he was really doing everything in his power to cope with sensory overload.

What parent of a kid on the spectrum (especially pre-diagnosis) hasn't lost their patience with a kid who makes the whole family a half-hour late by crying over a hair in her face or the pants that "just don't feel right?" How many parents haven't thought "missing person report" when he bolted in the crowded arena because it was too noisy, the lights were too bright, or somebody touched him? How many get tired of making separate meals or dealing with the tears when the kitchen smells like anything non-macaroni (or when the clothespin on her nose starts to hurt)? If it's hard for you as a parent to watch/respond to/turn your life upside down for, you know it's that much harder for them to live it.

Think of any time in life when you might hear, see, smell, taste, or feel something, and those are the times autism can hurt. No one promised adapting to life off Krypton would be easy.

No comments: