Autism groups and researchers have reacted with alarm to a federal research roadmap drawn up by advisers handpicked by the US health secretary, Robert F Kennedy Jr, fearing it will promote unproven fringe therapies at the expense of promising genetic research. A slew of scientific bodies and groups within the autism community are warning that the 336-page plan risks deflecting federal dollars away from potentially groundbreaking genetic research in favor of unreliable alternative therapies. There is little or no evidence, they say, that many of the proposed treatments work, or that they even fit the definition of autism.
Alliances of autistic people are especially worried that the plan could make it easier for them to be sent to institutions. The plan calls for government agencies to try out “supported-living models” such as “farmstead or campus-based communities”, which the groups fear could revive forms of institutional confinement. The strategic plan is the work of the Interagency Autism Coordinating Committee (IACC), a body that for 25 years has advised US health secretaries on federal efforts related to autism.
In January, Kennedy overhauled the panel, replacing prominent experts with several anti-vaccine advocates who have promoted dangerous remedies for autism including the heavy-metal removal process known as “chelation therapy” and the use of industrial bleach. The strategic plan completed its public consultation last week, inviting comments from the autism community, researchers and clinicians. Those comments will now be considered before a final version is crafted.
The plan ostensibly runs for three years, but its significance could be much more long-lasting. If adopted by the Trump administration, it could reframe federal autism research for years to come. Among the draft plan’s proposed $270m target for research spending is $15m towards studies of folate biology.
This follows a surge of interest in leucovorin or folinic acid, a derivative of vitamin B9 that is commonly prescribed for cancer patients. Last September, Donald Trump and Kennedy jointly embraced leucovorin as “an exciting therapy that may benefit large numbers of children who suffer from autism”. Leucovorin prescriptions instantly shot up by 71%, as concerned parents rushed to get onboard.
But a fierce backlash from scientists also followed, with many experts pointing out that there is scant evidence that folinic acid has any beneficial impact on autism beyond a very small subset of people. In March, the FDA approved leucovorin only for that subset – those with the extremely rare condition cerebral folate deficiency. Tager-Flusberg, who herself sat on the IACC until Kennedy’s arrival as health secretary, said that “there is simply no evidence that autistic people suffer from abnormalities in metabolizing folate.
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