Lutz joined the new independent committee as a parent advocate. Her son Jonah, 27, is profoundly autistic. She has conducted research into the history of debates, policy decisions and developments surrounding autism.
She acknowledged that prior autism advisory committees have often led to infighting and, at times, unproductive disagreement on which directions autism research and policy should take. But she added it was still better than the current federal committee under Kennedy, which she criticized for its political ideology.
“That’s why this new independent committee is kind of laser-focused on research,” Lutz said. “Because the need for evidence-based interventions, for good research to understand the causes of autism, the best interventions for the most intractable problems facing people on the spectrum, this is something we can all agree on.”
The independent committee has 12 founding members, including former U.S. Representative Jim Greenwood, a Republican who represented Pennsylvania’s 8th District. He was a sponsor of the Pediatric Research Initiative Act of 1999, which first created the federal autism advisory group.
The committee also includes former directors of the National Institute of Mental Health, an autistic doctor and autism researcher, and parents and leaders from national organizations like the Autism Society of America, Autism Science Foundation, Aligning Research to Impact Autism, American Academy of Pediatrics, American Academy of Child and Adolescent Psychiatry and the Coalition of Autism Scientists.
More members will be added, Mandell said, to be as inclusive as possible of representatives and experts from different specialties, organizations and subpopulations within the autism community.
“I hope that there is plenty of opportunity within this independent group for disagreement, for smart people with good intentions to come to the table and share both the directions they think science should be going and the interpretation of results of rigorous scientific experiment,” he said.
The independent committee will not directly advise federal agencies, but Mandell said the group can help guide funding decisions and priorities by gaining the attention of lawmakers in Congress and private organizations that invest in autism research.
He expects the new body of experts to also serve as a future resource for families, parents and autistic individuals seeking reliable, evidence-based information.