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Changing Minds: Advocates Reshape How We Think About Autism 

Wednesday, Oct 31 2012
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Illustration by Andrew J. Nilsen.


The protesters call themselves "autistic people." Members of the organization they're protesting call them "people with autism." While this may seem like another blip in the mostly inconsequential static of political correctness, the simple act of naming is tied up in the perception of whether autism is an epidemic disease or a developing culture.

On a sidewalk in Sacramento, the nine protesters are holding signs and handing out fliers in the path of an annual fundraising walk for Autism Speaks, the most visible autism organization in the United States. It acts as a clearinghouse for families on various subjects: daily life, bullying, legislation. It offers a way to connect. Comments on the Autism Speaks website reflect support and pride for autistic people, which explains how nationwide Walk Now for Autism Speaks events alone raised $30 million in 2011. That's not counting the millions of dollars in major gifts, the $3 million raised by Toys "R" Us, Inc., and the $300 million worth of donated advertising. The ads may be the way in which Autism Speaks is most influential — and most objectionable to the autistic protesters. Autism Speaks, founded in 2005, has influenced public discourse about autism by declaring a mission to researching the "causes, treatments and prevention" of this "disease." But if your condition is a part of your identity that you don't want cured or prevented, an organization like Autism Speaks and its supporters, however good their intentions, are going to seem, as Andy Voss, leader of the protest, says: "misguided — dangerously misguided."

Which is why how the autistic community refers to itself is more than just PC flap. Organizations like Autism Speaks use the term "person with autism" to reinforce the idea that underneath that condition, however debilitating, is a person who deserves to be loved and respected. That's "person-first thinking." Autistic self-advocates like the protesters, though, think "person with autism" implies that autism is something separate and bad and hopefully removable. That's why these self-advocates use the term "autistic person" — called "identity-first" thinking — connoting that autism is essential to who they are.

You can understand why a parent might bristle at the thought of their child being an "autistic person." To them, it's like calling someone a "cancer person." But, say the self-advocates, cancer can kill, while autism is a way of life.

It's worth noting that the blind and deaf cultures, like the protesters, also reject person-first thinking for marginalizing a condition that is fundamental to their community. "Cure," "disease," whether a person "is" something or "is with" something: These raise serious questions of how meaning is shaped, and it's appropriate that a group of people whose condition affects their interpersonal communication is shaping a conversation with society at large.

These are supremely tricky issues.

Certainly some of the thousands of walkers — parents and siblings and friends of people with autism — seem a bit perplexed at this small band on the sidewalk with their signs that read: "There is no 'cure' for autism. We're fine the way we are." "Autism Speaks doesn't speak for me." Or by their fliers: One says that the majority of money raised is being used for "causation and 'prevention'" rather than improving the lives of autistic people, and that there are no autistic people among Autism Speaks's leadership; the other flier, a list of autistic people murdered by family members.

The protesters, black and white, male and female, quiet, eccentric, otherwise, aren't protesting the walkers per se. They're protesting Autism Speaks, which is, in the words of one protester, "brainwashing everyone."

Up at Raley Field, the Autism Speaks gathering is festive. Young families, team T-shirts, wagons; a happy event focused on the kids who have a condition that is, despite decades of research, still mysterious. We know that there are many forms of autism caused by a variety of genetic and environmental causes. We know it can cause mental impairment, anxiety, speech problems, social disorder. It also often results in intense focus, creativity, memory, insight, high intelligence. We don't know what causes it or even, really, how to diagnose it. The latest figures have one in 88 kids being diagnosed with one form of autism or another, yet there's no sense of people resenting that an epidemic has brought them here. Polio never looked this fun. Still, for an organization whose stated goal is to cure a condition that others are proud of, well, it's going to get contentious.

Which is how groups like the Autistic Self Advocacy Network (ASAN) come about. ASAN's co-founder and president, Ari Ne'eman, an autism-rights activist in Washington, D.C., has seen how all those kids grow up and look for something else. "Autism Speaks tends to rely on bringing in younger families by stressing the idea that by donating money to them, their children can be made normal," he writes. "As parents begin to realize that their autistic children will become autistic adults, they often start to look for more disability rights-oriented organizations and solutions."

It's ASAN's Sacramento branch that gathers now in the shade of big trees overlooking the Sacramento River. They're discussing the success of the protest, what they should do differently next year, the fact that the walkers seemed more receptive than at last year's protest. No one told the protesters to jump off a cliff this year, says Voss, a 22-year-old student at California State University, Sacramento and co-founder with Zachary Miller of ASAN Sacramento. Voss was diagnosed with Asperger's at an early age, and taught himself to be social and gregarious because he knew that was the way to get along in neurotypical society.

"Neurotypicals" are the non-autistic, the cognitive majority. The others — autistic, intellectually disabled, schizophrenic, ADHD, bipolar — are part of the self-identified "neurodiversity" movement, which began coalescing in the early '90s and suggests that having a different kind of brain is a right rather than a curse. Here's Harvey Blume in a 1998 piece for the Atlantic: "With so much going on in a brain, the argument goes, the occasional bug is inevitable: hence autism and other departures from the neurological norm. ... Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general. Who can say what form of wiring will prove best at any given moment?"

About The Author

Brandon R. Reynolds

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