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Friday, May 16, 2014

Disease? Disorder? Disability? Difference?

Is autism a disease to be cured? A disability to be accommodated?  A difference to be celebrated?

At The New York Times, Jeffrey Howe reflects on reactions to a piece he wrote about the cost of dealing with his son's autism.
But the debate over whether autism is a disease to be cured or a variation to be celebrated is an abstraction, utterly disconnected to our day-to-day experience. To describe that, I cannot avoid the lexicon of illness.
Last year Finn climbed out his bedroom window, falling two and a half stories, breaking his pelvis and fracturing two vertebrae. He had pushed his stuffed animals out the window, and lacking any understanding of gravity or height, he simply wanted to join them in our yard. I can love Finn for his Finn-ness, but I cannot avoid words like “impaired,” “delayed” and “nonverbal,” or the phrase that particularly irks so many autism advocates, “low functioning.”
Yet language like that angers a vocal subset of autism spectrum disorder adults, and it has opened a schism in a community already starved for resources. To the quirky Intel programmer who recently was given a diagnosis of Asperger’s, treating autism as a disease to be cured must seem like a personal affront, but for people struggling to raise a child incapable of communication, using the toilet or controlling a physically violent temper, seeing autism as pathology isn’t much of a reach.