Secretary of Health and Human Services Robert F. Kennedy Jr.'s plan to create a "registry" of autistic people in the United States has already triggered an uproar from scared and suspicious parents worried about how this information will be used by the federal government, Rolling Stone reported on Thursday.
This follows a controversial speech made by Kennedy, a longtime anti-vaccine conspiracy theorist who has baselessly linked autism to immunizations, calling the disorder an "epidemic," flatly rejecting the widely-held consensus view that a large part of the increase in autism diagnosis is due to better screening, and vowing to find the environmental "cause" of autism by September, a promise HHS officials are trying to walk back. Above all, he described autistic people as unable to date, pay taxes or hold a job.
"Later, a spokesperson for the Department of Health and Human Services clarified that Kennedy 'was referring to those that are severely affected by this chronic condition' and that 'this was in no way a general characterization,' but it still didn’t sit well with members of the autism community, like parents, researchers, and advocacy organizations," the report said.
"'Harmful rhetoric has real-world consequences,' says Christopher Banks, president and CEO of the Autism Society of America. 'Autistic individuals and their families are left feeling dehumanized, devalued, and blamed.'"
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Meanwhile, Kennedy's pledge to track autism cases in a federal database has triggered a surge of fear, the report continued.
“[Tuesday] we had parents call our center in a panic, asking if they could get their children’s medical records erased,” one anonymous autism researcher told Rolling Stone, asking not to be identified for fear of reprisal. “We had several people who had been waiting many months to get a diagnostic evaluation call to cancel because they are afraid that their children will be unsafe if they are on an autism registry.”
Making matters worse, she said, parents skipping these evaluations mean their children could miss vital support and accommodations in school if they are, in fact, autistic.
Lauren Colley, mother of a 7-year-old boy with autism, laid out her fears in stark terms.
"When I hear things like that as a parent, it’s terrifying. It makes me feel as though my son is going to be subjected to all kinds of hatred and labels and othering that he does not deserve. It very much feels as though my son is in danger — that he’s being almost hunted down in order to be somehow taken away or fixed or any other number of horrible things.”