On May 27, 2025, the National Institutes of Health announced the Autism Data Science Initiative (ADSI) and opened a request for proposals with plans to award $50 million, purportedly to boost research on identifying the causes of autism. While the amount available for this ADSI is significant, representing more than 10 percent of the annual budget for autism research,1 the Coalition of Autism Scientists has serious concerns about the primary focus on data mining of existing datasets and the process for selecting proposals for funding, all while drastically eliminating ongoing investigator-initiated grants and gutting the NIH budget for future research.
“The ADSI needs to be understood in the context of the Secretary of Health and Human Services’ recent, bold statements about the department’s intention to find ‘the causes of autism by September,’ which casually ignores decades of high-quality research that preceded his oversight of U.S. public health and research initiatives,” said Helen Tager-Flusberg, PhD, Boston University and founder of the Coalition of Autism Scientists. “While the ADSI invites applicants to embrace an open science framework by registering their research plans and sharing their data and models, which are accepted scientific practices, it lacks transparency in the awarding and execution of the research to be conducted.”
ADSI Framework Evades Best Science Practices
In addition to registering research plans, the ADSI also calls for applications to validate and replicate initial findings, which is appropriate. However, what concerns the Coalition of Autism Scientists is the unusual ‘Other Transactions’ mechanism that the ADSI uses, which is unlike the standard NIH grant or contract mechanisms.
Lisa A. Croen, PhD, Senior Research Scientist, Director, Autism Research Program, Kaiser Permanente Division of Research and member of the Coalition of Autism Scientists Executive Committee explained, “Under the ‘other transactions’ agreement, NIH staff will be involved in the grant review process itself and have far greater involvement in the execution of the funded projects than is standard.” This high degree of involvement undermines the independence of the peer-review process as well as the role of the investigators whose proposals are selected for funding.
David G. Amaral, PhD, UC Davis Distinguished Professor, The M.I.N.D. Institute, Department of Psychiatry and Behavioral Sciences, Director, Autism BrainNet, and member of the Coalition of Autism Scientists Executive Committee added, “Another concerning issue is the rapidity with which the process from announcement to the application submission deadline is taking place, allowing just one month for applicants to pull together a large-scale, collaborative scientific proposal.”
Prioritize External Review to Build Trust
The open science framework proposed for ADSI should be complemented with an open review process that publicizes the names and credentials of the reviewers who will evaluate submitted proposals, shares which applications are selected for funding, and provides details on the terms and conditions for the awards. For that reason, the Coalition of Autism Scientists calls for an independent external advisory board of autism scientists and community members to support the ADSI, which will facilitate earning the trust of researchers and the public.
Autism Scientists Concerned About Future Research Support
Despite this planned infusion of money to advance autism science, the autism research community has grave concerns about the current and future landscape for the field. In a survey conducted last month with over 100 members of the Coalition of Autism Scientists, 98 percent worried that they would have difficulty obtaining new grants to support their research, and 85 percent expressed fears that they might lose their current funding.
Why are researchers so apprehensive about the administration’s stated commitment to advancing the science of autism? Responders to the survey cited several reasons, including plans to drastically reduce the budget for NIH, the sudden expiration of all NIH funding opportunities for autism research, the termination of existing grants, and changes in NIH priorities for future funding.
Already, Reuters reported that in the first 4 months of this year NIH funding for autism research was down by $31 million, from $147 million to $116 million, with cuts to institutions, grants that focused on women or diversity topics, and training grants, particularly those targeting underrepresented minorities.2 Funding for subcontracts to institutions outside the United States have also been eliminated. The future is looking bleak as proposed budget cuts to NIH, NSF, and the CDC and the elimination of the Department of Defense Autism Research Program will drastically curtail funding for most autism research.
The current concerns of the autism research community could be assuaged if federal funding levels for autism research are fully restored and commitments are made to award new investigator-initiated grants in areas outside ADSI.
About the Coalition of Autism Scientists
The Coalition of Autism Scientists formed in 2025 in reaction to U.S. Department for Health and Human Services actions to dismiss decades of autism research and establish questionable research protocols without input from the autism community. The Coalition is comprised of the leading autism researchers from across the United States who advocate for high quality, transparent, and collaborative research approaches that inform the global understanding of autism. The Coalition will publicly refute misinformation about autism and monitor progress by the federal government in supporting the highest quality research that addresses the priority needs of the autism community. To learn more visit https://www.coalitionofautismscientists.org/.
Footnotes
- Figures based on recent figures from the federal Inter-Agency Autism Coordinating Committee. Last accessed on 6-9-25 at https://iacc.hhs.gov/publications/portfolio-analysis/2020/portfolio_analysis_2020.pdf?ver=5
- Reuters. Exclusive: Trump administration defunds autism research in DEI and ‘gender ideology’ purge. 5-16-25
