Two Penn researchers are founding members of an independent autism advisory group formed in response to recent administrative changes to the federal government’s autism research panel.
The Independent Autism Coordinating Committee, launched in March 2026, was founded by 12 researchers, clinicians, and advocates seeking to provide evidence-based guidance on autism research and policy. This group formed after Secretary of Health and Human Services Robert F. Kennedy Jr. removed the entire body of the federal Interagency Autism Coordinating Committee and appointed new members.
The federal committee, which advises the Department of Health and Human Services on autism research priorities and funding, has historically helped shape national research agendas and recommendations for federal agencies.
Psychiatry professor David Mandell, one of the independent committee’s founders, told The Daily Pennsylvanian that changes to the federal committee raised concerns among researchers that the direction of nationwide autism research policy will shift toward having “nothing to do with the real needs of autistic people or their caregivers.”
“When I saw who was on the IACC — the federal committee — and how many of them deny the importance of vaccines or endorse unproven or even dangerous treatments for autistic people, I felt like I needed to be part of something that was more proactive,” Mandell told the DP.
Mandell, who served on the federal committee from 2012-16, said that the independent committee aims to develop a research agenda grounded in scientific evidence and the needs of autistic people and their families. He added that the group aims to influence private research funders and contribute to public discussions about autism science.
He expressed hope that the “private entities that fund autism research will listen to the research agenda that comes out of this independent group and use it to decide what research they will fund.”
Amy Lutz, a senior lecturer in the History and Sociology of Science department, joined the independent committee as a researcher and a parent advocate. Lutz told the DP that she came to this work because of her personal experience having a 27-year-old “profoundly autistic son.”
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“We, the families like mine, are desperate for better interventions, for more research to understand the condition for better treatments for the biggest problems plaguing our kids,” Lutz said.
Lutz explained that the committee aims to prioritize research that focuses on evidence-based approaches. She added that “it’s important that we lean into science … focus our efforts on evidence based interventions, and we don’t waste money going down rabbit holes to chase people’s pet ideological theories.”
Both researchers expressed that the public understanding of autism continues to evolve and can be influenced by common misconceptions.
“Autism now is really conceptualized as a spectrum” rather than a single condition, according to Mandell. Individuals diagnosed with autism can have a wide range of communication abilities, needs, and daily experiences.
Lutz added that public discourse about autism often emphasizes individuals with fewer support needs.
“One of my pet peeves about autism discourse today is that I feel it grossly privileges those at the mildest end of the autism spectrum,” she said.
The Independent Autism Coordinating Committee is scheduled to hold its first public meeting on Thursday. During the March 19 meeting, members will introduce their areas of expertise and begin identifying priority areas for autism research.
Mandell said the committee plans to develop recommendations that reflect current scientific understanding and the needs of autistic individuals and their families.
“The idea behind this group is to proactively develop and propose a research agenda that will truly be meaningful, that is rigorous and will advance advance science in understanding autism and the needs of autistic people,” Mandell said.
