The Trump administration is seeking to “make the proof” that acetaminophen (or paracetamol) leads to autism, Robert F Kennedy said earlier this month during a televised cabinet meeting.
But autistic researchers and advocates say they are significantly less interested in the “causes” of autism – which decades of research have shown to have a strong connection to genetics – than in support services and research on issues that would improve their quality of life.
The secretary of the US Department of Health and Human Services and longtime anti-vaccine activist claimed that countries with lower acetaminophen use have lower rates of autism diagnosis. But under-diagnosis of autism is common in many low- and middle-income countries, which may make rates appear lower, according to the World Health Organization.
Kennedy added: “It is not proof. We’re doing the studies to make the proof.” He also sought in the meeting to link circumcision, and subsequent acetaminophen use, to autism.
Related: Trump faces Republican backlash over Kennedy’s autism and vaccine claims
The remarks come after Donald Trump’s September announcement that acetaminophen “can be associated with a very increased risk of autism”, a connection that is not supported by rigorous science.
“It is a very dangerous move they’ve made. And also, compared to what could help, it’s quite useless to us,” said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network (ASAN).
Abby Schindler, coordinator of the Family Support Research and Training Center at University of Illinois Chicago, called the administration’s efforts “a distraction from what autistic people want and need”.
“Preventing autism or even identifying the various causes or risk factors of autism are nowhere near the top of the list,” she said.
Gross said the administration was “trying to act like they have all the answers about autism, but the truth is, they’re not even asking the questions”.
“They don’t want to do the research that would matter in our lives, and they don’t want to do what research shows works, which is to provide us with services and support so we can be included in the community,” she said.
Research on autism spectrum disorder, a neurological and developmental disorder affecting communication, learning and behavior, suffered $31m in cuts to federal funding by May, Gross said, and research on quality of life was already the most underfunded area of autism research.
Quality of life research can address some of the most pressing questions facing autistic people. These include what is the best way to teach people who don’t speak how to use a communication device? What is the best way to provide support services to as many people as possible? Why do autistic people have sleep disorders more frequently? Is it true, as initial studies suggest, that autistic people are more likely to develop Parkinson’s as they age? What is pregnancy, childbirth and childrearing like for autistic people? What is the best way to ensure good employment outcomes?
“Research in these areas would be a wonderful investment in improving the lives of autistic people, and the administration has signaled really clearly this is not the kind of research they’re interested in funding,” Gross said.
The federal budget passed in July will cut nearly $1tn from Medicaid over the next decade. Many Americans are losing Medicaid coverage entirely. When Trump was asked about the cuts during the press conference, he called it a “nasty question”.
“We need a working Medicare and Medicaid,” said Thomas Wallach, chief of pediatric gastroenterology and the pediatric GI fellowship director at Suny Downstate Health Sciences University. “When people are disabled, they need support.”
The cuts will have “a huge negative impact on autistic people”, Gross said. Some people will be forced to move into institutions, and some family members will need to leave their jobs in order to provide care once Medicaid no longer covers it – the activities of daily living for individuals with high-support needs, like eating, dressing, daily routines, meal preparation and transportation.
The US should prioritize supporting autistic people and their families, Schindler said, noting the focus should be “on reducing the long waitlists for community services, especially Medicaid home- and community-based support waivers”.
Autistic people need improved access to mental health care, especially for those at an increased risk of suicide, and appropriate education, which has also been cut under this administration, she added.
Investment in medical care was also critical, Wallach said.
“I want support for children’s hospitals … I want people to look into the ways that we can reverse some of the disabling events that occur that are temporary, like severe constipation,” he said.
Constipation is common among autistic people and can be linked to behavioral disorders, Wallach noted, adding that severe constipation “will actually cause kids to regress and lose verbal function”. More research on this topic could benefit anyone with motility issues, he said.
Wallach would also like to see more support for sensory integration and restrictive feeding: “In New York, we have two feeding programs that exist that are inpatient residency feeding programs. They both have waiting lists over a year long, and you have to be there for four to six weeks. How do you do that if you have a regular job, even if you’re well off?”
At the September press conference, two mothers spoke, but no autistic people took the podium.
“Autistic people need to be present in the spaces where decisions are being made about policies that affect our lives,” Gross said.
Instead, Trump administration officials were “quite explicit” with “eliminationist rhetoric” at that announcement, Gross said. Trump said the prevalence of autism should be “none”.
That felt threatening, “as if whether or not I should exist is up for public debate”, Schindler said.
Gross said she faced challenges as an autistic person, often because the world isn’t structured to understand or accommodate autism. But she wouldn’t change, even if she could. “Without autism, there is no me,” she said.
The administration’s focus on autism is part of a bigger push against people with differences, Wallach said.
“Autistic people, like trans people, are being identified as a group that they want to punish. They’re picking out people who are useful targets,” he said.
Pseudoscience like this was a dangerous distraction from what actually matters, said Jessica Banks, a neurodivergent mom of two who is from Saint Paul, Minnesota, and now works as a high school educator in New Zealand.
“The main source of disability and difficulty, the one that really traumatises and impedes the success and happiness of neurodivergent people like me and my kids, is a society that sees us as a problem to be eliminated,” Banks said. “This is just eugenics and misogyny in a Maga hat.”
Autistic people and their families need resources to “make the most of our strengths while allowing the whole person to have worth and dignity” – the kind of support government programs can provide if funding isn’t diverted by “weird nonsense”. Banks said.
