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The International Association for Autism Research’s Annual Meeting was held in Seattle this week.
The Field’s Premier Science Conference was scheduled to take place in Emerald City until Covid 19 shattered these plans five years ago. Now, American autism researchers are facing a very different kind of crisis. Massive cuts to federal funding, making false statements about the complex neurological conditions they study are a series of confusion and potentially worrying policy announcements on autism research.
In April, the U.S. Department of Health and Human Services announced that it is “planning a comprehensive research effort” of $50 million. [autism spectrum disorder] A department spokesman said the effort sets the goal of Robert F. Kennedy Jr. to determine the cause of autism, a neurological and developmental condition in which symptoms challenge communication, social interaction and sensory processing cluster.
At his first press conference last month, Kennedy issued many scientifically inaccurate statements about autism. That means it is preventable (there is no evidence of that). Studying its genetic foundation is a “dead end” (genes play an important role). Children with autism “never hold their jobs” (autism presents in countless different ways, and many autistic people work), and perhaps most importantly, “we know that it is an exposure to the environment” (which gently separates it from established facts).
On Thursday, a HHS spokesperson said it is developing a “safe data repository” of large, unidentified data, similar to the National Cancer Institute’s Surveillance, Epidemiology and End Results Program, to better understand the causes of conditions such as autism and chronic disease.
This is a clarification of the statement from Dr. Jay Bhatacharya, Director of the National Institute of Health, during a meeting with NIH advisors on April 21, including plans widely reported as “autism registrations” from individual health information gathered in a variety of sources, including insurance claims, pharmacy chain drug records and fitness tracker data.
Otherwise, HHS has minimized details of research efforts, and Kennedy said it would initially return the results in September. (Bhatacharya then pushes back that timeline and says the grant will only go out to participating researchers by the end of summer.)
A half-dozen senior scientists interviewed for the article said they were not consulted either of them or those they know.
“I know a lot of people in this field,” said Helen Tagger Fulsberg, professor of Emelita at Boston University and director of the Center for Autism Research.
Tager-Flusberg is a member of the HHS Interagency Autism Coordination Committee and advises agencies and Congress on autism research. Since Trump took office in January, the committee said it had not received communications from the HHS and has not been notified or consulted about the latest research initiative.
“With one hand, [Kennedy‘s] It offers a $50 million new research while they have already removed the massive amounts of grants already doing cutting-edge research on autism,” she said. [studying] It’s bothering me to hear that it’s been a cause of autism over the past 30 years and that it’s all been rejected. ”
The US government is the country’s largest investor in autism research. In the most recent periods when data is available, the federal government supported a total of $350 million, supporting 82.5% of US autism research, with the rest coming from private sources.
“Federal funding is the engine where research is conducted and an engine that has made a lot of incredible advances in autism research over the past 25 years,” said Matthew Lerner, an associate professor at the AJ Drexel Institute for Autism Research at Drexel University and a board member of the International Association for Autism Research.
Several researchers said they found Kennedy’s claim that autism was attributed to exposure to undetermined environmental sources. He said the role of environmental factors in autism, although in a more nuanced way, is a major focus area of government-funded research.
When scientists talk about “environmental exposure,” they mention non-ningenetic effects before or after birth. These range from prenatal stress hormones to nearby contaminants and schools where children attend.
“Any scientist would say this is so complicated that you can’t see it. [cause]”They’re making the most of the science and technology,” said Alycia Halladay, chief science officer at the nonprofit Autism Science Foundation. It cannot be called an environmental toxin. ”
Dr. Shafari Jeste is even more dull.
“This is what we dedicate to our lives,” said a pediatric neurologist in Los Angeles. “If we knew there could be one environmental cause, then considering that we all hunted it and perhaps we’ve been researching it for 20 years, we probably already found it?”
The cuts and chaos of the Second Trump administration have already affected the research community.
Several people interviewed for this article were asked not to be quoted by name for fear of retaliation. Or, they specified that they could speak on behalf of themselves rather than their employer, at the agency’s request.
In late April, Tager-Flusberg established a coalition of autism scientists. A group of senior researchers, a group of autism scientists, united around a common goal of pushing back disinformation and advocating for evidence-based research approaches.
More than 200 fellow scientists signed up soon, she said. However, when the young researchers asked to participate, she discouraged them from doing so. Speaking can cost them work.
“I really have nothing to lose,” she said. But “The last thing I want is to put anyone’s career at risk.”
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