Nearly six months ago, Robert F. Kennedy Jr. said: “By September, we will know what has caused the autism epidemic and we’ll be able to eliminate those exposures.”
Last week, we got a peculiar diagnosis: Tylenol use by pregnant women. The announcement occurred with the president and health secretary at the helm of a widely criticized White House press conference, in which Donald Trump could not pronounce acetaminophen, the generic name for Tylenol, and then followed up with an even more confusing social media post that said: “DON’T USE TYLENOL UNLESS ABSOLUTELY NECESSARY, DON’T GIVE TYLENOL TO YOUR YOUNG CHILD FOR VIRTUALLY ANY REASON.”
It was at best a muddled message, but more acutely, policy malpractice that seized on parental fear. In fact, the president’s own appointee, FDA Commissioner Martin Makary, attempted a more tempered message to all physicians in America: “To be clear, while an association between acetaminophen and autism has been described in many studies, a causal relationship has not been established and there are contrary studies in the scientific literature,” he said. “Acetaminophen is the safest over-the-counter alternative in pregnancy among all analgesics and antipyretics.”
Behind this debacle is a fundamental problem with the government’s approach to autism: asking the wrong questions. Rather than recognizing the history of autism research, the true needs of parents, and a proper scientific method, the administration has narrowed the aperture. These scientific blinders avoid questions of genetics, environment, and support needed to effectively care for pregnant women and children with autism. In fact, while RFK Jr. announced an expansion of autism funding and research last week, he has also cancelled and dismantled decades of work and millions of dollars in funding on this very subject.
I work at the exact nexus of these issues. Most recently, I was a senior leader at the nation’s mental health agency, SAMHSA, where I served on many cross-government bodies, including the Congressionally-mandated Interagency Autism Coordination Committee. I’m also a child, adolescent, and perinatal psychiatrist who treats pregnant people and children with neurodevelopmental disorders like autism and ADHD.
In my clinical work, I have a front row seat to patients making challenging decisions on what medications to take in pregnancy, as well as the winding back of the clock to see if there was anything they did that led to their child’s neurodevelopmental disorder. From my own experience, most patients already seek to minimize the medications they take during pregnancy, even common over-the-counter drugs like Tylenol, lest there be any risk to the fetus.
In this framework, the new recommendations are actively harmful, and not grounded in conclusive research. The main study RFK Jr. and his cohort have cited is a recent systematic review from the Dean of the Harvard T.H. Chan School of Public Health, which showed correlation, but no ability to draw causal links between persistent prenatal Tylenol exposure and autism. (It’s notable, also, that Harvard’s public health school, which I attended, was hard hit by the administration’s research funding cuts, with nearly 60% of its operating budget reliant on federal dollars.)
The health secretary also sidelined a population level Swedish study published last year in JAMA that looked at nearly 2.5 million births between 1995 and 2019. This study, the largest of its kind, initially showed an increase in neurodevelopmental disorders with Tylenol exposure, but when researchers looked at siblings within the same families, the associations went away.
Furthermore, we know that maternal fever during pregnancy has been associated with a potential increased incidence of autism spectrum disorder; and the recommendations include prompt treatment of fever in pregnancy. We are left in a bind here: The safest fever breaking medicine is being touted as one to avoid at all costs. What options does that leave pregnant people?
There is an obsession within RFK Jr.’s “Make America Healthy Again” universe about the root causes of disease, especially neurodevelopmental disorders—with a belief that this is unique to the movement, which members claim is untainted by special interest lobbies. But autism as we know it was first defined over 80 years ago, and there has been active debate in the field since then as to the causes of the illness and potential treatments. The definition and stigma related to the disorder have also evolved from a conceptualization of childhood psychotic illness to a social-communication disorder.
While there is great concern over what environmental exposure is leading to the disorder, some of the explanations for why there are more people diagnosed with autism are less nefarious and more complex to unpack. It is often simply that we recognize autism more in the world, and can give it a name.
There was another piece to last week’s big announcement: the spotlighting of leucovorin as a treatment for a subset of autistic patients that have cerebral folate deficiency. This is also nothing new; it’s an area of ongoing investigation, and high quality clinical trials are needed on the efficacy of this drug, especially given early signals relating to language improvement in very small studies. There is niche promise, but this is certainly not the standard of care.
All of this begs the question: What do we have evidence for?
The policy prescriptions at hand should be around increasing Medicaid access and high quality intervention services through programs like Head Start, not cutting $1 trillion dollars in public health insurance, and tens of millions of dollars in special education and early intervention grants. Study after study tells us that early identification and intervention for children with developmental delays is critical. There is a need for investment in autism services across the lifespan, ranging from adequate support in schools to job training for autistic adults.
Rather than scaring pregnant women away from medications, efforts to ensure high quality prenatal care, manage infections or environmental exposures, and support physical and mental health are key. Healthy pregnancies as a whole contribute to better developmental outcomes.
Treatments in medicine require balancing risks, benefits, and alternatives. It’s notable that the American College of Obstetrics and Gynecology and the American Academy of Pediatrics have been forceful in their repudiation of the harmful messaging around these issues. And it’s become clear that the American public will need to increasingly rely on professional medical society guidance rather than that of the current government.
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