203971
Autism: Juggling the dueling paradigms of neurodiversity, vaccines, eugenics, and cure
Tuesday, November 10, 2009: 2:48 PM
Ari Ne'eman
,
University of Maryland - Baltimore County, President, The Autistic Self Advocacy Network, Washington, DC
In recent years, autism spectrum disorders (ASD) have captured the attention of both the public and the media. However, while attention has increased significantly, the discussion of autism policy has lagged woefully behind. This session pairs as co-presenters, a disability policy researcher and parent of two adults with ASD, with an autistic self-advocate who founded a national advocacy group run by and for autistic adults and youth. They present the differing views on autism policy and their impact on public health. An analysis of autism bills before Congress over the last three years shows a dearth of mention of supports and services for autistic adults. Most legislation addresses vaccines, cause, cure, and treatment of ASD and the scientific evidence behind this proposed legislation is often lacking. Further, policymakers largely developed the proposed legislation without the input and perspectives of autistic individuals themselves and as a result, the proposed elements offer nothing to meet the needs of adults on the autism spectrum. Recently, the special vaccine court proclaimed no relationship between vaccines and autism, yet legislative initiatives have yet to catch up to the court's proclamation. This presentation discusses the three conflicting ideological groups in the autism world – neurodiversity (acceptance of differences), anti-vaccine, and eugenics/cure and their implications for public health. The presenters also examine autism research and policy needs and funding priorities from each perspective. Finally the presenters analyze how the three ideologies compete for the support of stakeholders, including parents, self-advocates, policymakers, and professionals/providers.
Learning Objectives: 1. Compare and contrast differing views on policy for a cure, support services, inclusion, and civil rights issues for ASD and its impact on public health;
2. Explain the neurodiversity movement and its impact on Autism policy and public health.
Presenting author's disclosure statement:Qualified on the content I am responsible for because: I am a Professor of Public Health and Occupational Therapy. I was a Robert Wood Johnson Health Policy Fellow and worked in the US Senate doing health and disability policy. I am the advisory board of several autism advocacy organizations. I have presented peer-reviewed papers on the autism spectrum as well as health and disability policy. I am the mother of two adult children on the autism spectrum. As an attorney, I have litigated disability policy cases.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines,
and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed
in my presentation.
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