In The Politics of Autism, I discuss divisions and factions within the autism community.
To the extent that the stakeholders form a “community,” it is a quarrelsome one. James Madison identified the causes of faction, including a zeal for different ideas and interests. In autism politics, the factional disagreements are diverse and deep. Emotions run high because the stakes are high. Few things are more frightening to parents than not knowing whether a child will ever be able to live independently, indeed to survive without them. For people with autism, the issue involves their very identity.
Chelsea Cirruzzo and Lauren Gardner at Politico:
Robert F. Kennedy Jr.’s pledge to investigate autism’s “root cause” has split advocates for people with the condition: Some, like Kennedy, want to know what’s causing it, while prominent groups think his search could do more harm than good.
Kennedy’s grim depiction of the most profound cases of autism — many “will never use a toilet unassisted,” he said in April — sparked condemnation from several groups devoted to championing autistic people. They said his remarks perpetuate stigmas associated with a condition that has a broad spectrum of manifestations — and, coupled with his well-known vaccine skepticism, color any attempt by the agency he leads, the Department of Health and Human Services, to conduct further autism research.
But others who say they speak for people with severe autism were heartened that Kennedy is promising to devote HHS’s resources to help them as autism diagnosis rates continue to climb.
“America has a big problem, and we have to face up to it,” said one of them, Jill Escher, president of the National Council on Severe Autism.
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Her organization also took issue with those, like the Disability Rights Education and Defense Fund and experts quoted in a New York Times op-ed, who said they thought Kennedy’s research plan was rooted in eugenics — the idea that science could be harnessed to prevent autistic people from being born. In a statement, the National Council on Severe Autism said it “categorically” rejected the claim.
That group and others, like the Autism Science Foundation and the Profound Autism Alliance, believe autism’s rise — the most recent Centers for Disease Control and Prevention data says 1 in 31 eight-year-old children has the condition — underscores the need to continue studying potential causes so that people can better understand risk factors and develop treatments for individuals with more severe forms of autism.
The Autism Science Foundation chose not to endorse the statement of its peer groups condemning Kennedy, President Alison Singer told POLITICO, because “there was a focus in that letter that we shouldn’t be focusing science on prevention, and we believe strongly that we should.”
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Representatives of the Autism Society of America, the Autistic Self Advocacy Network, and Autism Speaks said their organizations have yet to get a meeting with Kennedy or other HHS officials.
