Friday, January 18, 2013

On "Outgrowing Autism"

Haha, I just run my big ole mouth like I know something, or you should care for my opinion, or something.

But I find the “myth” of the “formerly autistic” to be pretty dang plausible.

So here’s the scoop: there were a couple news stories about the possibility of “outgrowing” autism. The studies that were cited may have been new, I’m not sure, but either way, they say about the same as any other study has suggested- that there is a significant minority of autistic children who grow up to be adults who don’t meet the criteria for autism.

Several influential bloggers reached out to counter the sensationalism, and I don’t disagree with that. The headlines suggest that a big ole chunk of people who are diagnosed just grow up to be normal by adulthood. People are picturing nonverbal school age children spontaneously catching up to their peers by the time they are leaving high school. Reality is probably more like, mildly affected children with average IQs who go through some sort of intensive treatment sometimes don’t seem very autistic later in life.

John Elder Robison suggests that this is pretty much entirely due to coping strategies and the ability to compensate with other skills and resources. He explains how he was definitely disabled as a child and now he really isn’t disabled as an adult. He explains that many, many autistic people reach independent functioning without any sort of accommodating support necessary. It’s a myth that all autistic people experience lifelong disability.

Then he goes on to point out just how well these “formerly autistic” individuals did in this study:

“I’ll offer another point of perspective.  All the same tools used for the kids in this study have been used on me. I’ve been tested repeatedly with the most recent round being last August.  In that ADOS screening, I was still above the ASD diagnostic threshold.  In the facial recognition tests, I was also well above threshold.  In the social function, I was above threshold.

The thirty-four kids in the study therefore tested less disabled than me, and I am not really disabled in daily life.  But my differences still show up on the tests.”

His conclusion? “Some of us do an excellent job of masking disability, especially in middle age.”


No. I could be wrong, and all. Robison is way smarter and more successful than I. He knows more about autism. He’s actually autistic.

Still, as my son would say: “But, no!”

MANY, MANY, MANY, MANY autistic individuals gain enough coping strategies and life skills to be functional, successful, and independent. This isn’t news to anyone familiar with autism. Someone like John Elder Robison is exceptionally successful, and one of the reasons he is so influential is because he is so extraordinary. If you could guarantee that all the newly diagnosed children right now would turn into John Elder Robison, I think parents would be downright ecstatic.

Well. HE’S autistic! The adults in the study who didn’t meet the threshold were waaaaay less autistic than he was.

And I think that’s my problem with this counter argument to the sensational “It’s Possible to Outgrow Autism!” story. We are now arguing about apples and oranges, here. We are arguing about the clinical diagnosis of autism versus… gee, I dunno, being well rounded? Having a good head on your shoulders? We’re back to making the same old stereotypes? “More Autism = Less Ability to Function” “Less Autism = Wildly Successful”? Jeez. I’m not autistic. I haven’t accomplished ANYTHING as cool as Temple Grandin, or John Elder Robison, or John Hall. That’s not what we’re talking about, here. We’re talking about Autism, and its symptoms.

I’m not an expert in neurology by a long shot, but my limited understanding leads me to believe strongly in the power of neuroplasticity. I think the emerging research from child development studies suggest that our culture, lifestyle, and environment greatly affect our neurological development. It seems our attention spans and working memories are changing dramatically every generation, just because of changes in technology and everyday life.

Apply that to autism, and early intervention, and it seems possible to brain train some of the mildly affected children right out of their autism by adulthood.

I’m honestly disappointed in the dialogue. It seems pretty clear that Autism is just this word we use to describe a set of (mostly) behavioral symptoms. By definition, some people that “are autistic,” “aren’t” later in life. But even if you make the argument that behavior changes don’t necessarily mean actual neurological wiring changes… it’s pretty clear that sometimes, that’s exactly what they mean. The brain is pretty flexible like that. So, both by clinical definition and by actual neurological wiring, it’s possible to “recover” from autism, given certain circumstances.

And who cares?! Does this leave people vulnerable to false hopes about the future? Um, why would it. The study definitely shows that most autistic individuals remain autistic well into adulthood. Losing an autism diagnosis isn’t a guarantee for a carefree, successful life. Keeping a diagnosis for a lifetime doesn’t guarantee that your life will suck. Really. That’s how life works—there are no guarantees about the challenges you’ll face. I’m a parent, so I get that “no autism” sounds easier than “even a little tad bit of autism” but then let’s talk about that as opposed to this weird conversation about how autism is some intangible, identifying characteristic, independent of disability, behavior, and brain wiring. “Outgrowing Autism” is an oversimplification, but, uh, so is “Pffft, you can’t stop being autistic, that’s silly.” There’s more to it than that.

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