SILVER SPRING, Md., November 25, 2011 — Last week, Ari Ne’eman stood at a dais in front of a room full of people celebrating the five-year anniversary of the Autistic Self Advocacy Network (ASAN), an organization he co-founded shortly after he graduated from high school.
“Then, the national conversation on autism was very different than it is today,” he said. He and co-founder Scott Robertson were driven to start ASAN, Ne’eman said, because, “Good intentions and love were not enough. You cannot help people through pity and fear.” Indeed, ASAN, with its slogan, “Nothing about us, without us” has helped bring the concept of neurodiversity and awareness of autistic adults to the autism community, although not always without controversy.
Attendee Chad Carson, who is a staffer at the American Association of People with Disabilities, one of the celebration’s sponsors, says that as an autistic person, he wanted to attend to see how far the organization has come. “It’s definitely something that’s needed,” he said. “With all the attitudes in regards to autism, they are pity-based.”
Co-founder Robertson is proud of the changes that have come about in five years. “I could never imagine how quickly we could make system change,” he said, although cautioning that the changes ASAN strives for will take years, if not decades, to take place. “But we’ve made some major progress,” he said.
The celebration featured several speakers, including Alexa Posny, assistant secretary for Special Education and Rehabilitation Services, and Sharon Lewis, commissioner of the Administration on Developmental Disabilities. James Weisman of the United Spinal Association, and host of the event, opened by saying of ASAN, “It’s a relatively new movement, but it’s come of age.”
ASAN has grown a great deal in the five years since Ne’eman and Robertson founded it. This year is the first that it has been officially registered as a 501(c)(3) non-profit organization with a budget. ASAN partners with a number of organizations, including AASPIRE and Autism NOW, and works to assist autistic individuals at a local level through their more than a dozen local chapters.
They recently published “Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults” to advise young people on issues pertinent to autistic students. ASAN will step into the research debate next with a symposium on ethical, legal, and social implications of autism research on December 10 at Harvard Law School.
Ne’eman himself was appointed by President Obama to the National Council on Disability and also serves as a public member to the Interagency Autism Coordinating Commitee (IACC) as well as being involved with other organizations.
ASAN clearly is gaining political and social clout, but it is still very important to its members on a personal level. Lori Berkowitz, who attended the celebration and was diagnosed autistic as an adult, says that her diagnosis “made me find all these people who are like me. I never had that before.” As for the celebration itself, “In a word? It’s awesome.”
Central to the event were two awards that ASAN handed out. The first went to Nancy Thaler, who was honored as “Outstanding Ally.” Receiving the award, Thaler related what went through her mind when Ne’eman told her she was to be honored as an ally. “A self advocate was declaring me something. It shifted everything upside down,” she said to thunderous applause.
Also honored were Corina Becker and Kathryn Bjornstad, creators of Autistics Speaking Day, for their “Exceptional Services to the Autistic Community.” Becker says that although awards are certainly not the reason to work on ASDay, the award feels like a big acknowledgement from a lot of people. “I’m very excited,” she said of the celebration, “Both for the award itself and to meet people face to face.”
As for Bjornstad, she says that ASDay and ASAN have both done wonderful things for her self-esteem. “Before ASDay, I was sort of watching the autistic community silently,” she said. “I thought any skills I had were of no value to the community and I felt kind of lost.”
After coordinating ASDay’s Facebook page and working with Becker to run the day itself, Bjornstead began to volunteer with ASAN, something she calls “life-changing.”
“Watching myself do something that had such a beneficial effect on the community was a huge boost to my self-esteem, and I still feel the same sense of awe I felt that day, that ASDay got as big as it did.”
Bjornstad says that being in the same room with so many people she’s met online but not in person was an amazing experience for her. “I think it really built on the sense of friendship and community that I already had and strengthened my ties to both ASAN and the autistic community in general,” she says. “I expected to be overwhelmed and nervous the entire time, but once I was there, it felt more natural than almost anything else I’ve ever done. I was able to just enjoy being there and I felt completely welcome and completely accepted.”
“Through ASAN,” she continued, “many people, including me, first learned about neurodiversity and autism rights. It’s given us a chance to organize, to communicate with each other and to demand to be accepted as people.”
Attendee Savannah Logsdon-Breakstone was similarly pleased to be at the celebration. “I do a lot of cross-disability work,” she said. “Having something that focuses on the same thing, but specifically autistic issues? I don’t have the word, but it’s like home.”
Jean writes a personal blog at Stimeyland and an autism-events website for Montgomery County, Maryland, at AutMont. You can find her on Twitter as @Stimey. Read more of Jean’s work at Autism Unexpected in the Communities at the Washington Times.
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