Thursday, October 8, 2009

right idea, wrong language

Health and Human Services Secretary Kathleen Sebelius wrote a Yahoo News op-ed this week about the Obama administration's commitment to autism research, doubling research funding and preventing private health insurance companies from denying coverage to individuals because of their autism. I applaud this effort, but question her language and the thinking it reflects.

In this op-ed, Sebelius writes (italics are mine)

Autism has created new challenges for families, schools, and health care providers. When parents discover that their child has autism today, they’re left with a lot of questions, but few answers. What causes autism? How can it be prevented? Which treatments can help? Where can I get needed services? These questions aren’t new. And the government has tried to address them in the past, most notably with the Combating Autism Act, which passed in 2006. But there has never been a comprehensive, well-funded effort across government to overcome autism – until now....
Granted I am coming at this from the perspective of a mother whose child is very lightly touched by autism, but I don't think autism is something to be combated or prevented.  Yes, being neurologically different from ones peers makes life more challenging, but in addition to the many deficits that come with autism come many strengths - even genius.  Many studies have suggested a link between the autistic brain and musical, mathematical, and other intellectual ability.

I don't think it's in the public interest to eradicate autism, and with it some of our world's brightest innovators.  I know it's a parlor game to speculate on which historical geniuses were autistic, but some commonly-cited examples are: Einstein, Mozart, Orwell, Warhol, and Darwin.

Going back to Kathleen Sebelius, she writes (again, italics mine):
Like public health challenges such as polio in the 1950s and HIV/AIDS in the 1980s, we must address the rising prevalence and complex needs of people with autism.
Autism is not a disease; it is a neurological difference.  You can't catch autism like you can catch AIDS or polio.  Yes, more people are being diagnosed with autism today than ever before, but that doesn't mean autism is more prevalent.  It means we're re-categorizing previous diagnoses - kids who were diagnosed with severe language disorders or who would just have been considered socially awkward 10 or 20 years ago are now being diagnosed on the spectrum.  And it means we are perhaps more aware of neurodiversity, and are realizing the need to apply more resources to supporting children's education and development. 

I've recently learned that my point of view puts me in the "autism rights movement."  It's the opposite of the Autism Speaks / Defeat Autism Now camp.  It's the belief that autism is an innate part of a person, like his sexuality or skin color, and that autism should be accepted and accommodated rather than "cured."  I didn't know there was a movement, but I'm happy to move along with other like-minded folks.

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Keep it civil, people.