The annual meeting of the International Society for Autism Research took place in Seattle this week.
The field’s premiere scientific conference was scheduled to be held in the Emerald City five years ago, until COVID-19 dashed those plans. This time, U.S. autism researchers face a very different kind of crisis: massive cuts to federal funding, Cabinet members making false statements about the complex neurological condition they study, and a series of confusing and potentially worrisome policy announcements about autism research.
In April, the U.S. Department of Health and Human Services disclosed that it’s planning a $50-million “comprehensive research effort aimed at understanding the causes of [autism spectrum disorder] and improving treatments,” a department spokesperson said. The effort was spurred by Secretary Robert F. Kennedy Jr.’s stated goal of determining the cause of autism, a neurological and developmental condition whose symptoms cluster around challenges with communication, social interaction and sensory processing.
At his first news conference last month, Kennedy made a number of scientifically inaccurate statements about autism: that it is preventable (there is no evidence that it is); that studying its genetic underpinnings is a “dead end” (genes play a significant role); that children with autism “will never hold a job” (autism presents in myriad different ways and many autistic people work) and, perhaps most significantly, that “we know it’s an environmental exposure” (this is, to put it mildly, far from an established fact.)
On Thursday, an HHS spokesperson said that the agency was developing “a secure data repository” of “large-scale, de-identified data to better understand the causes of conditions like autism and chronic diseases,” similar to the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program.
This was a clarification of National Institutes of Health Director Dr. Jay Bhattacharya’s statement during an April 21 meeting with NIH advisors that the study would draw in part from personal health information gathered across a variety of sources, including insurance claims, pharmacy chain medication records and fitness tracker data, a plan widely reported as an “autism registry.”
HHS has otherwise offered minimal detail on the research effort, which Kennedy initially said would return results as early as September. (Bhattacharya has since pushed back on that timeline, saying that grants would only start to go out to participating researchers by the end of summer.)
A half-dozen senior scientists interviewed for this article said that neither they nor anyone they knew of had been consulted.
“I’m someone who knows a lot of people in this field,” said Helen Tager-Flusberg, professor emerita at Boston University and director of its Center for Autism Research Excellence, and “not a single person I know has been approached.”
Tager-Flusberg is a member of HHS’ Interagency Autism Coordinating Committee, which advises the agency and Congress on autism research. Since Trump took office in January, she said, the committee has not received any communications from HHS, and has not been informed or consulted about the latest research initiative.
“With one hand, [Kennedy‘s] offering $50 million in new research, and with the other hand, they have already removed a significantly large number of grants that are already carrying out cutting-edge research on autism,” she said. “NIH has invested hundreds of millions of dollars into [studying] causes of autism over the last three decades, and so it’s disturbing to hear that it’s all being dismissed.”
The U.S. government is by far the nation’s biggest investor in autism research. In 2019 and 2020, the most recent period for which data are available, federal grants totaling $350 million supported 82.5% of U.S. autism research, with the remainder coming from private sources.
“Federal funding is the engine by which research runs, and it is certainly the engine by which autism research has made the incredible advances that it has over the last 25 years,” said Matthew Lerner, an associate professor at Drexel University’s AJ Drexel Autism Institute and a board member of the International Society for Autism Research.
Several researchers also said that they found Kennedy’s insistence that autism stems from exposure to an undetermined environmental source perplexing. The role of environmental factors in autism is already a major focus area for government-funded research, they said, albeit in a more nuanced way.
When scientists speak of “environmental exposures,” they are referring to any nongenetic influence before or after birth. These can range from prenatal stress hormones to neighborhood pollutants to the school a child attends.
“Any scientist will tell you that this is such a complex thing that you can’t just be looking at one [cause], that you have to be thinking about the role of environment, the role of genetics, how they interact, and how that changes over the lifespan,” said Alycia Halladay, chief science officer of the nonprofit Autism Science Foundation. “We do know that there are a lot of environmental exposures that have not been studied. We can’t say it is an environmental toxin.”
Dr. Shafali Jeste was more blunt.
“This is what we dedicate our lives to,” the Los Angeles pediatric neurologist said. “If we knew there could be one environmental cause, wouldn’t we all be out there hunting for it, and maybe having already found it, given that we’ve been doing research for 20 years?”
The cuts and chaos of the second Trump administration are already having an affect on the research community.
Several people interviewed for this article asked not to be quoted by name for fear of retaliation, or specified that they could only speak on behalf of themselves and not their employer, at the institution’s request.
In late April, Tager-Flusberg founded the Coalition of Autism Scientists, a group of senior researchers united around the shared goals of pushing back on disinformation and advocating for evidence-based research approaches.
More than 200 fellow scientists signed up immediately, she said. But when younger researchers have asked to join, she has discouraged them from doing so. Speaking out could cost them their jobs.
“I don’t really have anything to lose,” she said. But “the last thing I would want is to put anyone’s career in jeopardy.”