29 September 2010
[A special thank you to Kassiane Sibley, who led the protest in my absence, as I was at the Self Advocates Becoming Empowered (SABE) conference in Kansas City. Founded in 1990, SABE works for the full inclusion of people with developmental disabilities throughout the States.]
Autistic Self Advocacy Network (ASAN) aims to advance the principles of the disability rights movement, as well as to ensure equal access, opportunities, and rights in society for individuals on the autistic spectrum. The 2010 ASAN-PDX protest against Autism Speaks in Portland, Oregon comes on the heels of larger advocacy efforts being undertaken by Autistic people and cross-disability allies throughout the nation. In addition to the Portland protest, further protests are being organized for Saturday, October 23 in Dallas/Fort Worth, as well as Saturday, November 6 in Washington, D.C.
ASAN-PDX asserts that Autistic adults will not be bullied, and that they will raise their voices. If Autism Speaks is to continue speaking for autistic individuals, they must include them in their leadership, and not only in token ways. They have zero Board members who are on the spectrum. And it is unfortunate that only one autistic is in an advisory position with their organization. Allowing only one autistic person in an upper-level position is simply another form of exclusion. Autism Speaks solicits monies from communities and puts little back in. Only four cents of every dollar goes toward services to help autistic people in the here and now.
"I share ASAN's concerns around the use of biomedical research to eradicate autism," says Dominic Le Fave in a blog post which includes a photo of the protest, "...the eugenic potential of genetics research is something that has already outstripped the capacity of our current ethics." To read more, click here.
When Wired.com asked ASAN President, Ari Ne'eman, what non-autistic people can do to become effective allies of the Autistic community, Ne'eman replied: At the political level, watch where your money is going. There are a lot of well-meaning people who think they're helping us by donating to Autism Speaks or other groups looking for a cure. It would be better for people to get involved in their local communities, and ask tough questions like, "Is my school inclusive? Is my workplace willing to hire autistic people and other people with disabilities?" To catch the full article, click here.
Autism Speaks' booing of ASAN-PDX supporters ceased when Jim Sinclair's Don't Mourn For Us was recited in a dramatic reading. People began to ask for copies of the article, and tension dissipated.
Hecklers who yelled, "You aren't a parent, you have no right to say that," take note that three of ASAN's Board members, as well as several ASAN supporters are Autistic individuals who also happen to be parents of autistic children. And those who uttered such statements as, "This is why we need a cure," and "You aren't really autistic," please refer to A Handbook for Disempowering Advocates. When your autistic children grow up and decide to become self-advocates themselves, will you seek to disempower them too?
A few Autism Speaks allies brought cookies and water bottles to protesting ASAN-PDXers. THANK YOU. Thank you!
Last year's local protest coverage:
Protest Against Autism Speaks
14 September 2010
Sue lives in Sun Lakes, Arizona. In addition to providing consult services to adults on the spectrum, and to parents of autistic children, she presents at conferences through her business, Making Sense of Autism. She has been an active participant at Autreat for the past ten years and is in hopes of launching a similar autistic conference/retreat program on the west side of the States. For relaxation, Sue plays tennis, and has recently joined a Mah Jongg group (stating that it's easier to socialize with a game to focus on). She is a Star Trek The Original Series fan who also enjoys books about forensic science.
Elesia: Employment issues are a huge topic in the Autistic community. As a mature adult on the spectrum, please share your experiences in the work force.
Sue: For me, burnout started in my 40s, almost 10 years prior to my self-discovery and diagnosis. I was a school-based occupational therapist. I championed getting out of the medical model of pull-out services and getting into the functional environment (the classroom) to work with students. Unfortunately, I worked myself out of a job. I discovered I couldn't function in other people's environments. I went back for a master's degree in assistive technology, thinking this would get me into an environment I could handle--a computer environment. I cut back to part-time employment to handle working on my degree.
When I finished, I accepted a part-time position at a university, thinking the small class size and quiet of a university setting would work for me. It was then I self-discovered why I was struggling so much with employment despite my years of previous success in my field. I started "coming out" to a therapist who worked with autistic children. At this time, my well-hidden--due to vigilance--autism-related characteristics started coming out. And I ended up losing my job without really understanding what happened until much later when I went back into school-based practice (this time asking for places where I could "escape" in the schools, though I phrased it as needing places to assess students and write reports). Later in life, I left school-based practice and ended up in clinic-based practice where I was guaranteed my own space.
Elesia: When you received a diagnosis, did you choose to share it with others?
Sue: I outed myself to anyone and everyone who would listen. I was desperate to learn what it is I did not know about other people, but was pretending to know so I could fit in. There was no way to ask people without disclosing my status on the spectrum.
Elesia: How did revealing your diagnosis affect you at work?
Sue: I focused my work on autistic clients. For a time, this combination of private practice in an autistic setting helped to keep me working full-time. By my mid-50s, I could no longer handle the pace and demands of full-time work. I dropped back my hours to less than 20 per week.
Every few years, I've redefined what I am willing and able to do (fortunately, I have a supportive boss) in order to find my remaining niche in my profession.
Elesia: You are still working now. Has anything changed? Do you have new struggles to face?
Sue: I'm now 64 and have reached another crisis, as I cannot deal with the energy and time demands of creating written reports, even though what I produce is excellent! Despite my constant effort to find a more efficient method, it just takes so long to convert what I know into words. I'm justified in retiring, but there is much more I still want to do. But I can no longer work in conventional ways. I've also found I no longer have the energy to keep up the image my husband, family, and friends have of me as a person who remains emotionally calm and able to handle life's little bumps (despite sharing my diagnosis with them). Interestingly, with each "letting go" of the person I never was, I am enjoying the person I am as I discover the pleasures of living life rather than just surviving it.
Elesia: Do you have advice for younger people on the spectrum who are entering the work force?
Sue: You are doing yourself and those who live and work with you a disservice by constantly working to compensate for the person you are by trying to "fit in." The energy required is neither recognized nor appreciated by others who assume you are Doing Your Best Without Knocking Yourself Out (like many people). As you get older, it only gets harder, and you'll find you are missing enjoying the pleasures in life. I gave up a lot to achieve what I have. And I would do anything to have back the enjoyment I felt in those years when I was a child and I was being the person I was born to be.
11 September 2010
Rachel Cohen-Rottenberg publishes the blog, Journeys with Autism. She is a wife, mother, writer, singer, artist, photographer, community volunteer, and the chapter leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN).
At the age of 50, she awoke to her place on the autism spectrum and discovered a world of gifts, struggles, and life-changing possibilities. Her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. Her work has also appeared in Shift Journal of Alternatives: Neurodiversity and Social Change and in the Disability Rights and Neurdiversity section of the ASAN website.