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Friday, July 17, 2020

Finding the Autistic Community

 In The Politics of Autism, I examine the role of social media in the development of the issue.  Social media can spread vaccine disinformation, but they can also provide autistic people and their families with a way to connect with one another and to press for government action.

Joseph Shapiro at NYT:
Also true to their age group, members of the A.D.A. generation use social media to meet and organize. Ari Ne’eman was 18 when he started the Autistic Self Advocacy Network online in 2006 to challenge the prevailing narrative about autism, one that was driven by parents’ groups and researchers. It largely saw autism as a tragedy and the answer as a cure.
For Mr. Ne’eman and other autistics, that ran counter to the proof of their lives, which were rich and fueled by the ambitions promised by the A.D.A. He and others wrote and organized to shatter the old images of autism. A recent academic study of newspaper content credited their work for a dramatic shift to positive depictions of autistic life.
Mr. Ne’eman, now a visiting scholar at the Lurie Institute for Disability Policy at Brandeis University, said, “Finding the autistic community online was important to me because it sent the message that you don’t actually have to take, as written on stone tablets, everything that professionals say about you as true.”
Thus social media perform the same function that Tocqueville ascribed to newspapers: "Then a newspaper gives publicity to the feeling or idea that had occurred to them all simultaneously but separately. They all at once aim toward that light, and these wandering spirits, long seeking each other in the dark, at last meet and unite. The newspaper brought them together and continues to be necessary to hold them together." (Democracy in America, Lawrence/Mayer ed., p. 518)