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14 November 2013

Autism Speaks and Representation

Protest of Autism Speaks at the Policy Summit at George Washington University. From left to right: Farrah H. (student at George Washington University), Patricia Chandler, Emily Titon (co-chapter leader, ASAN Rhode Island), Lydia Brown, Matt Young (chapter leader, ASAN Washington State), Natalia Rivera, and Laura B. Image description below post.

While we are discussing Autism Speaks and their latest kerfuffles over the revelation of their collaboration with the Judge Rotenberg Center (that's literal and not a joke!), the protest of their policy summit in DC yesterday, Suzanne Wright's horrific statement in advance of the summit, and John Elder Robison's resignation from their science and treatment advisory boards during the protest, I'd like to take a few minutes to discuss briefly the issue of representation within this organization.

I and other autistic activists who oppose Autism Speaks' philosophy and practices frequently emphasize the fact that this organization has never had and does not now have even one openly autistic person serving on the Board of Directors or working in a leadership role (as an executive or administrator).

1. Openly autistic leadership is critical in an organization that purports to represent autistic people. There is no shortage of openly autistic people in the world, nor in the more specific fields of autism research, disability service provision, policymaking, law, or nonprofit management. This should not be a particularly high bar to reach, and yet Autism Speaks has consistently failed to meet it.

2. A call for openly autistic leadership does not constitute a call for tokenism. If Autism Speaks were to find and appoint one or two autistic people to either perfunctory executive positions (titles without power or responsibility) or board positions, that does not mitigate their serious and long-standing lack of openly autistic leadership, nor does it suddenly mean that they have chosen to meaningfully represent autistic people.

3. Similarly, such a demand cannot be conflated with an absurd demand for a closeted autistic to out themself. There may well be closeted autistic people serving on Autism Speaks' board or working in leadership roles within the organization. (For that matter, there may be people who are undiagnosed or who do not otherwise identify as autistic, even if they might be externally judged by their associates to be autistic, in such positions.) There are many legitimate reasons, however unfortunate by circumstance, that autistic people cannot be safe in public disclosure of their disability status. Yet again, this does not mean that Autism Speaks should not be held responsible for their utter failure to meaningfully include or empower any openly autistic people. (And to this note, the possibility that there might be autistic people working at Autism Speaks who are afraid to disclose the fact that they are autistic at Autism Speaks raises yet further questions and continues to challenge the legitimacy of this organization.)

Any organization that is consistently and continually challenged in its philosophies, fiscal allocations, fundraising tactics, practices, and public statements by the very people it purports to serve and benefit is an organization that has little, if any, credibility.

The facts that Autism Speaks does not now and has never meaningfully included any openly autistic people in its leadership or decision-making process, and operates with callous disregard for the priorities and concerns of actually autistic people, are damning. Support organizations that support the priorities of autistic people, meaningfully include autistic people in leadership, and are supported by the autistic community.

For some alternatives, consider supporting the Dan Marino Foundation, the Autistic Self Advocacy Network (full disclosure: I work there), the Autism National Committee, TASH, the Autism Women's Network, the Autism Network International, or even the Autism Society. But I urge any socially conscious donor to avoid lending any credence to Autism Speaks; their credibility, I'm afraid, rather resembles the aftermath of an FBI firing range training session on their paper targets ​— utterly shot to pieces.

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Further reading on Autism Speaks from this site:

Image description: This is photograph of seven people standing outdoors on a red-paved sidewalk, in front of a blue sign that says George Washington University Media and Public Affairs. The people appear to be a variety of genders, with one South Asian, one East Asian, one Latina, one Black woman, and three white people, carrying signs that bear colorful messages such as "Autism Speaks has no autistic leadership," Autism Speaks does not value autistic input," a pie chart of Autism Speaks' budget, "I want/be heard/I want/Autism Speaks/quiet" with PECS images, "Autistic People deserve better," and "Keep $$$ for autism local do not fund Autism Speaks."

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