Life With A Side Of Autism

LIFE WITH A SIDE OF AUTISM

Thursday, October 20, 2011

Disappointed

"So they told me they're sure, after all that testing. He's autistic. He's pretty high-functioning, they think, but he's autistic."

"Oh my God," she said, horror filling her face. "Oh, how awful for you. You must be so disappointed!"



She didn't know how she sounded. My friend meant well. What she probably meant to say was "Oh, if only you could have had an easier diagnosis - something you can clearly understand and work with that would eventually all go away and soon."

Autism doesn't work that way.

In fact, just when you think you're beginning to understand how Autism works, it surprises you. And most importantly, just when you think your autistic child can't possibly do whatever it is that autism will keep him from doing, he finds a way.

And he does it.

And then you think to yourself, "How the hell did he do that? How is he understanding it? I'm at a complete loss as to how he could have even been taught to do it." But he did it. He just did it. He figured it out himself. Maybe sometimes he was listening when I thought he wasn't. I forget how much he really does process and pay attention to.

So now who's got the learning disability? The kid with autism? Or his Mom who is consistently shown how smart he is and how much he perceives and still doesn't always get that he can.

He not only can, he will.

In his own time.

And there's the rub. Since the day he was born, everyone's had these milestones - benchmarks of where he ought to be in his development, and how he should demonstrate that development level. Like a badge of honor for every milestone, people brag about the first roll over, the first steps, the first words, the alphabet song, the complete sentences, the first word read and the adding of pennies from Mommy's purse. And people take those badges and wave them about saying "Look what my kid can do! Look what my kid can do before your kid! Look what my kid can do better than your kid!"

Autism don't need no stinkin' badges.

It will do what it's ready to do, in the way it can process and learn it best. Like water hitting a wall, it wears away at each task, finding the fluid way around it, the chinks that help it through it, and it gets there anyway, eventually. It may not look like it did it right, it may not want to stay there once it's gotten there, but it will find its own way in its own time.

So I ask again, who has the disability? The kid with Autism, or the people who make tic marks on sheets, check off boxes in diagrams and shade in the spreadsheets? Spreadsheets that pidgeon-hole everyone who doesn't think like a tic mark, or a box, or a shaded line. Who has a mind that's more open to the world around them, to learning, to endless possibility?

My son is autistic. Would I wave a magic wand if I could to make it go away? You know, if you'd asked me that early on I would have said yes - back when Autism was frightening and his future was uncertain and I read and heard entirely too much bullshit from well-meaning people. But now? Now, I don't think I would. His autism is so much a part of him, like his eye color or his love of bacon and Harry Potter movies. I simply cannot imagine him any other way, and I wouldn't want him any other way. I'll work hard with him, and his teachers and aides to see that he has the tools to carve his way through any wall he hits. If he'd rather slide through the cracks or flow around the sides, that's fine with me. He'll get there. I know that.

And I wish I had answered my friend:

Disappointed?

Yes, I'm disappointed.

Not in him. In me.

In us.

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