When President Trump told pregnant women last week to avoid Tylenol, citing the unproven claim that it can cause autism in children, experts around the world were aghast. For Laura Klinger, a psychiatry professor at the University of North Carolina at Chapel Hill, the White House press conference was “very hard to watch.”
It was doubly surreal for her, because it also came with cause for celebration. In the same breath, the National Institutes of Health director announced a $50-million infusion into the Autism Data Science Initiative: a group of 13 studies, led by Klinger and others, that will examine potential factors contributing to autism. It’s one of the Trump administration’s most prominent investments to date in any field of study.
Outside scientists praised the initiative’s slate of respected scholars from prominent institutions, while observing that their credibility feels at odds with an administration that is spreading misinformation and slashing funding. This is an awkward duality to navigate, and one familiar to many scientists across the United States: to need money from an administration that is destabilizing the scientific enterprise.
A number of the chosen scientists said they were grateful for the cash from the NIH, during a year when the NIH has terminated and delayed thousands of grants. Asked to comment on the remarks from Trump and his deputies, including Robert F. Kennedy, secretary of the Department of Health and Human Services, several declined, saying they were not qualified to weigh in or needed to be cautious about what they said.
Leading experts and clinical organizations say there’s no research showing a causal link between autism and Tylenol, also known as acetaminophen, which is considered the safest over-the-counter painkiller that can be taken in pregnancy. The Food and Drug Administration has clarified that “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.”
Although Helen Tager-Flusberg, a Boston University psychologist and founder of the Coalition of Autism Scientists, found the press conference “appalling” and “completely unprecedented,” she praised the selection of “a stellar list of scientists.” David Amaral, a professor of psychiatry and behavioral sciences at the University of California at Davis, said “it’s given the autism world some hope that not all is lost.”
The overall picture was tough to reconcile for Jeremy Veenstra-VanderWeele, a Columbia University professor of developmental neuropsychiatry. “They’re being given an opportunity to really make an impact in autism research,” he said. But “the administration is acting in a way that’s hard to understand or to stomach. The hypocrisy of on the one hand saying that acetaminophen is some huge contributor to autism risk, and on the other hand saying that you want to figure out what’s actually contributing to autism? It’s just bizarre.”
When the Autism Data Science Initiative was announced in late May, it raised concerns from scientists. The Centers for Disease Control and Prevention had recently announced plans to re-examine whether there is a link between vaccines and autism, a link that multiple studies have failed to bear out but that Kennedy has continually pushed. Kennedy had also declared that “by September, we will know what has caused the autism epidemic.” Scientists and clinicians say there is no single cause of autism, better known as autism spectrum disorder, a neurodevelopmental condition with a wide range of symptoms.
The application window for the initiative was just a few weeks, rather than the typical months, to be followed by a highly streamlined review. “People were nervous it was either not going to be used for rigorous science, or it was going to turn into a way for weird things to happen in science,” said Judith S. Miller, an associate professor of psychiatry at the Children’s Hospital of Philadelphia. Yet there was “also this thought of, ‘If real scientists, if good scientists, don’t submit applications, then that’s also not good.’”
At the time, the NIH was en route to terminating or freezing grants — an estimated $4.5 billion’s worth, according to the crowdsourced database Grant Witness — for being either out of step with the administration’s priorities or at institutions under federal investigation for antisemitism. Kristen Lyall, an associate professor in epidemiology and biostatistics at Drexel University, saw the call for autism-research proposals as a potential way out of “a challenging spring, a hard time to be in science in this country.”
Competition was stiff: Nearly 250 teams threw their hats in the ring, according to NIH director Jay Bhattacharya. Their proposals weren’t vetted during the usual study sections — publicly announced meetings of subject-matter experts from outside the NIH. Instead, the agency convened “a small army of both internal and external reviewers” to grade the “overwhelming” flood of submissions, Taylor Gilliland, a senior scientific adviser at the NIH, said during a staff presentation. He said that selecting reviewers was especially hard because they aren’t supposed to have conflicts of interest with applicants or their institutions. “With thousands of key personnel listed on hundreds of applications,” he said, “I can assure you this was no easy feat.”
Grantees said that they did not always know who authored the feedback they received via the NIH, but that it was moderate to minimal, and seemed reasonable and bias-free. The process also moved fast: Klinger, the psychiatry professor at UNC, recalled having just two days to respond to a list of questions.
By September, the teams were negotiating their contracts. Many are probing a wide variety of potential environmental, genetic, biological, and lifestyle factors, based on analyses of existing data sources. At UNC, Jason Stein and Joseph Piven will conduct lab experiments using human neural cells, collected at UNC and other sites, that derive from patients who have siblings with autism.
“Our goal is to do rigorous science using the best controls that we can, without political influence, to try to make sure that we better understand the mechanisms leading to risks for autism,” said Stein, an associate professor of genetics. “We’re grateful for the money that has been given to us by the federal government to do that.”
Douglas Walker, an associate professor of environmental health at Emory University, will be measuring the totality of individuals’ environmental exposures — a concept known as the “exposome” — and how they might contribute to autism. “The focus of our project is really going to be one of the largest exposome assessments of autism that’s ever been done,” said Walker, who will analyze more than 8,000 participant samples.
At Oregon Health & Science University, Katharine E. Zuckerman will focus on identifying not autism’s causes, but factors that influence health outcomes for children with the disorder and their caregivers. The pediatrics professor said the $4.25 million will allow her to add graduate students, postdoctoral researchers, and full-time research assistants. Earlier this year, the NIH terminated a grant that was funding a trainee, she said.
“We really depend on NIH funding to survive,” Zuckerman said. “It doesn’t just help me solve autism, but it also gives jobs to all these people, that are really high-quality scientific jobs that support them in gaining expertise and becoming the future experts of our field.”
A few of the chosen teams will have the task of trying to independently validate the others’ findings. Some of the scientists said they see that emphasis as another encouraging sign that the NIH is investing in high-quality science, regardless of the political conversation. “The science is the science,” said Zhandong Liu, a leader of one of the replication teams and a computational scientist at the Baylor College of Medicine. “We generally are not — at least I’m not — impacted by what is going to be the conclusion.”
Grantees said they believe they will be able to publish and discuss their findings without government interference. But they know the world will be watching. The goal is “to be very transparent with how I came to those conclusions and allow external people to independently validate what I say,” said Amy Cochran, an assistant professor in population health sciences and mathematics at the University of Wisconsin at Madison.
Klinger, who is a clinical psychologist as well as a scientist at UNC, has already started having difficult conversations — with the families in her practice. Since Trump’s press conference, she said, mothers have expressed “immense guilt and sadness” over the notion that they were to blame. And “when I look at the list of the other ADSI scientists that were funded, it’s a fantastic list,” she said.
It is, she acknowledged, “a difficult place” to be.
