The Trump administration announced on Monday, Sept. 22, that it had found the "answer to autism" – a claim that's evoked strong reactions from across the political spectrum. Health and Human Services Secretary Robert F. Kennedy Jr. included this controversial topic as part of the "Make America Healthy Again" agenda, while some members of the autism community have criticized the change as dangerous and regressive.

In a press conference, Trump, alongside RFK Jr. and other officials, claimed that Tylenol use during pregnancy could contribute to the development of autism in children, a contrast to current medical guidelines that say acetaminophen, the generic form of Tylenol, is safe to use.

The Trump administration has made repeated claims about its plans to find the "cause" for autism, despite decades of medical and scientific consensus indicating that there is no singular source, including medication, that can be attributed to the condition, and that it is likely the result of multiple contributing factors like genetics. Kennedy has argued, without evidence, that the country has a "preventable" "autism epidemic" fueled by "environmental toxins."

Trump and his advisers also discussed a potential treatment for autism, the drug leucovorin, which RFK Jr. is reportedly fast-tracking for FDA approval.

"The claim that Tylenol causes autism has been shown to be false by actual scientific research ... Autism is a very complex neurodevelopmental condition," said Dr. Sara Rodrigues, Executive Director of Balanced Learning Center, a nonprofit providing services, coaching, advocacy and therapy for autistic and neurodivergent people. "Genetics are known to play a very large role and environmental factors are believed to interact with genetic predispositions. Omitting that complexity misleads policy, funding, and medical care."

"The announcement is an incorrect reading of data," said Noor Pervez, Community Engagement Manager at the Autistic Self Advocacy Network (ASAN). "The way that RFK Jr. speaks about autism is actively dehumanizing, and it promotes stigma against autistic people."

RFK Jr. and Trump point to two dozen studies worldwide suggesting a link between a mother's acetaminophen use during pregnancy and her child being diagnosed with autism or attention-deficit hyperactivity disorder later in life. But there have also been studies debunking the link, meaning that there is no settled, firm link to the drug.

USA TODAY reached out to a dozen autism groups, posted in a group for people with autism with thousands of members, reached out to autism expert networks with hundreds of participants and reviewed comments and statements from several major medical institutions for this story.

Causes of autism are not known, but genetics play a key role

While research has not found one firm, widely accepted answer for what factors contribute to autism, organizations like the CDC and ASAN say that it is largely based on genetics. People who are autistic themselves are more likely to have autistic children, and the increase in autism diagnoses in the last few decades, the CDC previously found, does not inherently indicate an "epidemic," rather, it can likely be attributed to more access to diagnostic tools and improvements in early detection.

Even so, said Pervez, there is a lot we don't know, and some of that can be traced back to a history of research and rhetoric that the current administration is now echoing, a focus on a singular "cause" and a "cure."

"Most federal research funding around autism for most of history has centered on curing autism. The autistic community does not benefit from cure research, and the focus on it actively hurts autistic people that exist," said Pervez.

And while focusing on a "cause" or "cure" may sound like a positive when heard in passing by people from outside the community, that rhetoric not only truncates research that could assist in improving the lives of disabled people into adulthood, old age and beyond, it can also become dangerous when medications like leucovorin are pushed as a treatment without ample scrutiny in a race to find said "cure."

"There is a long and troubling history of people peddling supposed autism 'miracle cures,'" said Pervez. "Those treatments did not work, and they had dangerous and sometimes fatal side effects. It is absolutely vital that, before autistic people are encouraged to take a drug, we know that it works and that it is safe."

In the Sept. 22 news conference, Trump repeatedly told pregnant women to avoid taking Tylenol unless they can't "tough it out," in which case their intake should be limited.

"Don’t take Tylenol," he said. “Fight like hell not to take it.” Kennedy added that HHS is encouraging physicians to exercise their “best judgment” by prescribing the lowest effective dose for the shortest necessary duration.

Even just this strong suggestion, Rodrigues says, can lead to negative health outcomes before a child is even born.

"When the government states this as a certain cause or major risk factor, many pregnant people might feel guilt, or anxiety, especially because illness, pain, or fever are common during pregnancy," she said. "They might avoid necessary medical care or suffer untreated fevers, which can themselves pose a risk to mother and baby. "

"It feels to me like we've regressed so horribly"

Shannon Rosa, senior editor of Thinking Person's Guide to Autism, said that while different autism groups disagree about a number of things, many said that the White House's latest claim is nonsensical.

"It feels to me like we've regressed so horribly and intentionally by the administration, because as they've demonstrated constantly, they have no interest in actual science," she said. "They have no interest in research, they have no interest in the welfare of autistic people and their families. They are only interested in whatever people whispering into their ears have told them they should do."

Pushing the idea that consuming Tylenol during pregnancy causes autism harkens back to past pseudoscience that placed blame on mothers for giving birth to neurodivergent children, she said, such as the long-since discredited "refrigerator mother" theory of the 1950s that theorized autism was caused by emotionally distant or cold mothering. Rodrigues agreed.

"From refrigerator mothers, to vaccines, to formula, if you notice, much of the blame has been placed on mothers," Rodrigues said. "This is not new. For decades, autism has been explained through scapegoating mothers - cold parenting, wrong feeding, wrong choices, wrong medical decisions. The targets shift, but the underlying message is the same… autism is your fault, and you should feel guilty."

Access, respect and support, not blame, are vital, say advocates

Theories like these not only promote a sense of shame that many families of disabled people already grapple with due to social pressures and judgment, said Rosa, but isolate, alienate and discourage people from networks and resources that could offer support and community.

"As a parent of a high-support autistic adult, I also came from outside the disability community and was initially terrified because I didn't have the right information," said Rosa, whose son was diagnosed during the cultural peak of the now-disproven and retracted theory that vaccines cause autism. "I am so terrified for all the parents who were like I was 20 years ago with a young child with a new autism diagnosis...it's going to put families like I was 20 years ago into an avoidable tailspin."

"When my teen was younger, we were told so many fear-mongering 'truths' about him," added Rodrigues, who is herself a neurodivergent mother and the parent of an autistic teen. "We were told that he would never have relationships, friendships, meaningful communication. We were told that he would never be able to think creatively or independently. This kind of rhetoric sets us back so far."

After years of work and advocacy, both said, progress has been made. But disinformation takes attention away from resources that can improve the quality of life for disabled people, including support, services, accommodations, and rights, Pervez said.

"Autistic lives are worth living - that includes people who are nonspeaking, people who have higher support needs, people of color. All means all," said Pervez, who added that true support for people with autism looks like respect, access and community support. "The way the world is structured can make it hard for disabled people, including us - that doesn’t mean autism makes you a burden. Needing help doesn’t mean you’re a bad person. Everyone does, just in different ways and at different times."

This story was updated to add new information.

This article originally appeared on USA TODAY: 'We've regressed so horribly': Autism groups respond to Trump administration's Tylenol claims

Reporting by Mary Walrath-Holdridge, USA TODAY / USA TODAY

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