RFK Jr.'s Advisers Want to Shake Up Autism Research — and Scientists Are Worried

A group of advisers chosen by U.S. Health Secretary Robert F. Kennedy Jr. has released a big plan for autism research — and many scientists and autism groups are not happy about it. The 336-page document lays out how the government might spend money studying and treating autism over the next three years. Critics say the plan pushes treatments that have little or no scientific proof, while pulling money away from solid genetic research that could lead to real breakthroughs. If adopted by the Trump administration, the plan could shape federal autism research for years to come.

The plan was written by a federal advisory committee called the Interagency Autism Coordinating Committee, or IACC. This group has advised health secretaries on autism for 25 years. But in January, Kennedy replaced many well-known experts with people who have promoted anti-vaccine ideas and unproven autism remedies. These include a dangerous process called 'chelation therapy' and the use of industrial bleach as a treatment.

One expert who used to serve on the committee is Helen Tager-Flusberg, a professor at Boston University and founder of the Coalition of Autism Scientists. She has been sharply critical of the new plan. 'So much of the plan is fringe science that is absolutely not ready for prime time,' she said. Many other researchers share her concern that the plan steers money away from proven science.

One major concern is a proposal to spend $15 million studying leucovorin, a form of vitamin B9 normally used to treat cancer. Last September, President Trump and Kennedy both praised it as exciting for children with autism, and prescriptions jumped 71% as parents rushed to get it. But scientists pushed back hard, saying there is very little evidence the drug helps most autistic people. In March, the FDA approved leucovorin only for people with a very rare condition — not for autism broadly.

Adding to the worry is the fact that one of Kennedy's IACC picks, Dr. Dan Rossignol, runs a clinic that is one of the top providers of leucovorin to autistic patients. He also serves as an unpaid adviser to a company that makes folinic acid — the key ingredient in leucovorin — and owns a small share of that company. When asked if this was a conflict of interest, Rossignol said he followed all federal ethics rules. He added that his role on the committee did not let him decide where research money goes.

The plan also supports testing a procedure called fecal microbiota transplantation, or FMT. In this experimental treatment, a small amount of feces from a healthy person is transferred into someone with gut problems. The draft says many autistic people have digestive issues that can cause sleep problems, irregular eating, and behavior challenges, and it suggests FMT as a possible fix. Scientists worry these experiments might not be carried out safely or openly.

The plan also backs a communication method called 'partner-assisted communication,' where a helper guides a non-speaking autistic person to point at letters or type words. A rival group of top autism researchers, the I-ACC, says every serious study has shown that in these cases, the helper's thoughts come out — not the autistic person's. The I-ACC was formed in March as a counterweight to Kennedy's handpicked panel, and it includes several former IACC chairs. They say this method simply does not meet proper scientific standards.

The most alarming concern for many disability advocates is the plan's call to build 'supported-living models,' including 'farmstead or campus-based communities,' in at least 10 locations across the country. The Autistic Self Advocacy Network, or ASAN, says this sounds like a return to institutions where autistic people are separated from the rest of society. For nearly 30 years, disability rights groups have fought to close such isolated facilities. ASAN says farmsteads 'still take away autistic people's freedom.'

Those fears grew stronger in June, when the Justice Department said states no longer have to provide community-based care for people with disabilities. The American Association of People with Disabilities called that a move back to 'a dark and shameful era of ignorance and cruelty.' Many advocates are urging officials to reverse this direction before it becomes settled policy. They say autistic people deserve to live in their communities, not be separated from them.

Not everything in the plan has drawn criticism. Some parts — like supporting autistic people throughout their whole lives and focusing on those with the greatest needs — have been welcomed by scientists and advocates. The plan went through a public comment period last week, and those comments will be reviewed before a final version is written. Many researchers and autism groups are urging officials to listen to the science and protect the rights and safety of autistic people.