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Sunday, May 5, 2019

Autism Politics is Like Faculty Politics on Crystal Meth

 In The Politics of Autism, I write:
The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a  disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”
Alisa Opar at The Washington Post:
On one side are parents of autistic children with severe traits — including intellectual disability, limited language ability and self-harm — who say autism is a medical condition that needs often-intense treatment.
On the other side are supporters of “neurodiversity,” who maintain that the condition represents a neurological difference and a disability — one that society should accept and accommodate rather than try to prevent or cure.
The article notes the founding of the National Council on Severe Autism.
“There’s a wide abyss between someone who is very mildly impaired and someone who is really severely impaired with intellectual disability and all the different kinds of comorbid conditions that tend to cluster at that end of the spectrum,” says Amy Lutz, a founding member of the organization and mother of Jonah, 20, who has severe autism and is prone to aggression and self-harm. “There’s no one speaking directly for these families and about this severe end of the spectrum.”
Many self-advocates have responded with anger to the organization’s creation. “NCSA lifts up and advances depictions of autism, which paint autistic people as burdens, as toxic and as catastrophes,” says Julia Bascom, executive director of the Autistic Self Advocacy Network. “These attitudes harm us, increase stigma and misunderstanding, and make life harder for everyone, including our families.”
 The controversy over the NCSA gets at a central point of contention in the autism wars: Is autism a difference, diagnosis, disorder, disease or disability? These are the “D-words” that really matter in the autism community, says Simon Baron-Cohen, professor of developmental psychopathology at the University of Cambridge...Which word someone uses to define autism is more than an intellectual exercise. It affects how the public views people on the spectrum and their quality of life, as well as access to job placement programs, housing and health care.