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A Reporter's Guide to the Autism Speaks Debacle

The Autism Speaks summit sends the autism world into an uproar.

Autism Speaks is well-funded and influential, and its blue puzzle piece icon has come to symbolize autism. The organization is also stubbornly emblematic of the divisions within what I will call (somewhat desperately and inadequately) the autism community.

What was the occasion?

At the “Autism Speaks to Washington” Policy and Action Summit in Washington D.C., the organization pitched its advocacy strategy and research updates.

What was the trigger?

The day before the summit opened, Suzanne Wright, who co-founded Autism Speaks in 2005, published this commentary: "Autism Speaks to Washington—A Call for Action." She described autism as an unmitigated disaster for families, consistent with her organization's established message. Advocates point out that this message stigmatizes and contributes to the exclusion and abuse of autistic people. In addition, as self-advocate Lydia Brown observed, the exhibitors at the resource fair of the Walk Now for Autism Speaks event in DC (November 2) included the Judge Rotenberg Educational Center, an institution notorious for its extreme abuse of disabled students.

What did the triggers trigger?

The Autism Women’s Network and the Autistic Self-Advocacy Network flooded Wright’s column with critical responses.

Jess Wilson, author of the popular blog A Diary of a Mom, renounced the organization, describing her futile attempts to move Autism Speaks towards a more respectful and inclusive message, and Wright’s physical interaction with Wilson’s young daughter against the girl’s objections.

John Elder Robison, author of Look Me in the Eye and Raising Cubby, and a Psychology Today blogger, resigned from the Science and Treatment boards at Autism Speaks. He had been the sole openly autistic person associated with the organization. “Autism Speaks has accomplished internally what it wishes to accomplish worldwide: zero autistic people," the self-advocate and blogger Brigianna Spencer observed [see below]. Update: Kerry Magro, the social media/marketing coordinator at Autism Speaks, is openly autistic, as is Amy Gravino, who volunteers on the Communications Committee. Apologies for the inaccuracy.

Others have withdrawn from Autism Speaks events, including a walk this weekend, and have ended their financial support. Seemingly hundreds of autistic and ally bloggers and commentators have reiterated their disgust with the organization and emphasized that it does not speak for them.

Surely Autism Speaks is all about working with people like them?

The organization is dominated by parents of autistic children, whose agenda can conflict with that of autistic people themselves. Self-advocates point out that an advocacy autism organization without autistic people is Autism Gagged, as troubling as a whites-only organization that purports to address racism or a men-only panel on sexism.

What’s the agenda of autistic people?

Appropriate, well-targeted services that enable autistic people to live more autonomous lives. In 2010, Autism Speaks spent just 4 percent of its budget [pdf] on services for autistic people, according to the Autistic Self-Advocacy Network. As John Elder Robison, referring to the need for support, pointed out, “the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful. We have delivered very little value to autistic people, for the many millions raised.”

How then does Autism Speaks spend its money?

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism,” its website announces. Most controversially, that includes an emphasis on prenatal testing. Many autistic self-advocates claim that the organization has a eugenics-based mission and its goal is an autism-free world. Wright herself has publicly anticipated a future in which autism is "a word for the history books."

But isn't autism a problem?

Autism comes with challenges, which are amplified by society as we know it. But autism also comes with advantages. Imagine an autism-free world. Inoperable rail systems. The abandoned, rusting remains of Silicon Valley. Distressed cows. Incomprehensible data. No one to blame for humanity’s ongoing empathy deficit.

There must be an upside to Autism Speaks?

Some decent, well-intentioned people are associated with the organization. They have been instrumental in, for example, passing state legislation requiring fully-funded health insurance plans to cover therapies for autistic children, including in Massachusetts, my own state. Some might still seek to reform the organization from within.

What’s the fall-out so far?

Less support for Autism Speaks, though for now, we can only guess its impact. A Diary of a Mom has sympathetically addressed the families who defend Wright’s description of autism. John Elder Robison has expressed his concern that the autistic and scientific communities remain too far apart.

You’re not neutral.

Who is? Instead of eliminating autistic people, let’s seek to understand the complex interactions of genetic and environmental factors that can cause people to undervalue and marginalize others.

Where can I go for a quote that represents autistic people?

The Autistic Self-Advocacy Network is a nonprofit organization run by and for autistic people.

The Thinking Person’s Guide to Autism is “a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals.”

The Autism Women’s Network is an inclusive community of "autistic girls and women, their families, friends, and supporters."

GRASP is an Asperger's-focused organization in which the Executive Director, 100 percent of the Advisory Board, and 50 percent of the Board of Directors are diagnosed autistic.

The Asperger’s Association of New England was established to address what was then an absence of supports for autistic people with language who did not need intensive care. [Disclosure: I’m on the Board of Directors.]

Which autism organizations would spend my donation on supporting autistic people?

All of the above are good candidates.

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