NIH Moves Forward With Major Autism Research Initiative

By Michelle Diament

NIH Moves Forward With Major Autism Research Initiative

The National Institutes of Health is investing $50 million through its new Autism Data Science Initiative. (Lydia Polimeni/NIH)

Amid a flurry of recent autism announcements -- including some that have raised questions -- the Trump administration is investing $50 million into research that experts say is a step in the right direction.

The National Institutes of Health is green-lighting 13 new projects as part of its Autism Data Science Initiative, or ADSI. The research will examine what factors are leading to an increase in autism diagnoses, the influence of environmental contaminants like pesticides and air pollution, perinatal complications, maternal diet and nutrition, aging in adults with autism and more.

"The projects chosen for funding are excellent and will provide answers to questions relating to a wide range of environmental exposures and their interactions with genetics," said Alycia Halladay, chief science officer at the Autism Science Foundation.

The initiative comes as the Trump administration is making autism a key part of its health agenda. News of the research funding late last month was largely overshadowed by President Donald Trump's claims that autism is related to Tylenol use during pregnancy and the administration's push to approve a drug known as leucovorin to treat the disorder, though studies on both are inconclusive.

"The contrast between the exciting science reflected in the ADSI awards and the simplistic pseudoscience views expressed by the president and (U.S. Secretary of Health and Human Services Robert F. Kennedy Jr.) could not be more striking," said Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, who's leading the Coalition of Autism Scientists, a group of more than 300 researchers in the field.

When ASDI was initially announced in May, many autism researchers were skeptical citing the quick timetable for applications and atypical protocols that provide NIH staff far more control than usual.

"I'm grateful to see that with the ADSI, NIH is still upholding a rigorous approach to research on autism, but worry that this might be undermined by future announcements from the CDC where Secretary Kennedy has installed several anti-vaccine spokespeople and through which he has funded a project on vaccines and autism that failed to be funded through the ADSI," Tager-Flusberg said.

NIH said that ADSI projects will study "environmental, medical, and lifestyle factors in combination with genetics and biology." They will utilize existing large-scale datasets, including the Simons Foundation's SPARK project, Medicaid claims data, the National Survey of Children's Health and others. Researchers are expected to work with members of the autism community to ensure that studies are informed by the perspectives of individuals who are on the spectrum, their caregivers and service providers.

"Our Autism Data Science Initiative will unite powerful datasets in ways never before possible," said NIH Director Jay Bhattacharya. "By bringing together genetics, biology, and environmental exposures, we are opening the door to breakthroughs that will deepen our understanding of autism and improve lives."

The $50 million investment follows a steep drop in federal funding for autism research, with data showing a decline of 26% during the first four months of this year.

"While we are glad to see increased investment in autism, it is important this funding is an addition to support for existing autism research, data and healthcare training programs that Congress has already authorized in the Autism CARES Act," said Andy Shih, chief science officer at Autism Speaks. "We continue to advocate for full funding of these authorized Autism CARES Act programs that train healthcare professionals, address the (developmental-behavioral pediatrician) workforce shortage, provide data on the characteristics of those with autism, and increase research on important areas like aging and autism and how to best support those with unique communication needs or need 24/7 care."

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