In The Politics of Autism, I discuss the Interagency Autism Coordinating Committee and research priorities.
RFK Jr. has stacked it with his own type of people.
A U.S. advisory committee appointed by Health Secretary Robert F. Kennedy Jr. recommended on Tuesday that the government adopt the term "profound autism” for those with the highest support needs, and improve gaps in medical care for people with autism.
The Interagency Autism Coordinating Committee helps guide federal autism research spending, worth about $2 billion annually, and coordinates efforts among government agencies, such as the National Institutes of Health and the Centers for Disease Control and Prevention.
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The spotlight on high needs has been welcomed by some advocates who say those with profound autism were left behind as the definition and diagnosis of autism spectrum disorder expanded in recent years to include many high-functioning individuals. Others in the autism community oppose the designation as unnecessary and stigmatizing.
The committee also prioritized improving medical care for autistic patients who suffer from other health conditions, such as gastrointestinal, sleep, neurological, autoimmune and metabolic disorders. Such illnesses are sometimes undiagnosed by medical providers or assumed to be symptoms of autism, leaving patients without critical care, they said.
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The public members of the committee, those appointed by Kennedy to represent the autism community, voted on Tuesday largely in support of making recommendations to him. Many of the federal members, those who represent relevant government bodies, voted to abstain, arguing that the agencies needed more time to review the proposals.
The panel's recommendations passed and will be sent to Kennedy.
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