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January 18, 2013

Slate: Is the neurodiversity movement misrepresenting autism?

Much of what we know about autism has changed since my son Jonah was diagnosed in 2001, but the metaphors we use to conceptualize it have remained largely the same. Portia Iversen, founder of Cure Autism Now, writes in her book "Strange Son" that she thought of her son's autism as a "deep well" he had fallen into. Jenny McCarthy describes the "window" through which she struggled to free her son from his autism. Arthur Fleischmann states in Carly's Voice, his account of how his severely autistic daughter developed the ability to communicate using a keyboard, that "There was a wall that couldn't be breached, locking her in and us out." The more profoundly impaired the child, it seems, the more likely these images of physical barriers are to crop up, as parents search desperately for the "intact mind" (Iversen again) they believe is there, somewhere deep down, despite often brutal symptoms that suggest the opposite.

It's not just the hope of desperate parents that fuels this quest — although, as one of those parents myself, I would never underestimate our ability to persist in our hopes and efforts even in the face of abundant evidence. Over the past decade, our faith has been validated by the emergence of several seemingly low-functioning autistics whose "intact minds" have been revealed through their brilliant writing. These celebrities, including Amanda Baggs, Sue Rubin, Tracy Thresher, Larry Bissonnette and others, speak minimally, if at all, and require support for even the most basic of life skills. Yet their blogs, videos and written commentary — as seen on major networks such as CNN and in Academy Award nominated documentaries — have inspired countless parents around the world.

Jonah was 4 years old when he started writing in chalk on our driveway without ever having been taught — although his phrases, like "FBI WARNING," were admittedly less communicative than Carly Fleischmann's complaint, "HELP TEETH HURT." Despite that, I really believed, for many years, that Jonah would develop into the next Tito Mukhopadhyay, the Indian boy featured in Iversen's "Strange Son," who published several books of poetry despite autism so severe he was nonverbal; prone to constant, repetitive movements, or "stims"; and, not infrequently, disruptive, noncompliant, and even aggressive with his mother.

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