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January 18, 2013

Slate: Is the neurodiversity movement misrepresenting autism?

(Continued)

I'm not saying it's impossible for nonverbal autistic individuals to communicate using a keyboard. YouTube videos show Carly Fleischmann and Tito Mukhopadhyay typing independently, although the lack of controlled investigation of their abilities, among other red flags, continues to concern skeptics. What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with "intact minds" that just need to be accessed. It would include the needs of the 20 percent of the autistic population that is nonverbal, the 50 percent that is intellectually disabled, and the 30 percent that suffers self-injurious and/or aggressive behavior. As Kolevzon points out, these populations have "tremendous overlap," meaning that there are tens of thousands of individuals who are both nonverbal and intellectually delayed, with dangerous behaviors that, untreated, can prevent them from living at home, going to school, and participating in the community. "Entirely missing here," Warner has written, "is the notion that there is a world of difference between unique personality traits that may be quirky, annoying, or charming, and actual signs of pathology. Or that the difference between personal style and pathology resides in pain, distress, and impairment."

I'd like to believe that those who argue the neurodiversity position do so out of ignorance — and I don't mean that as an insult. Amanda Baggs, Tracy Thresher and others offer a sanitized version of low-functioning autism, which is all the public sees. The kids with the unfortunate trifecta of autism, intellectual disability and dangerous behaviors aren't on TV singing with Katy Perry. They're in one of the 11 inpatient hospital units in this country dedicated to this population (many with waiting lists months long), in residential treatment facilities, or barely managed at home behind closed doors. It's only once you're thrust into this world — as I was, when Jonah broke a teacher's nose when he was in kindergarten — that you see how many there are: kids who have blinded themselves or bruised and concussed their parents and siblings or who spend their days in highly restrictive equipment to keep them from doing so. These children will never write one blog or produce one video. Despite that — or rather, because of that — they couldn't be more convincing. And any portrayal of autism that glosses over their profound disability closes the door on them all over again.

Lutz writes about autism and other issues she's encountered as the mother of five children and is currently working on a book about ECT in the pediatric population. She is president of EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled, and can be reached at amy@easifoundation.org.

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