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In a significant shake-up of autism advocacy and research, Robert F. Kennedy Jr., the newly appointed Secretary of the US Department of Health and Human Services (HHS), has reconstituted the Interagency Autism Coordinating Committee (IACC), drawing both ire and concern from the autism community. His overhaul, which took place in late January, has led to a marked reduction in the representation of autistic individuals on the committee, coinciding with the recent establishment of a rival organisation, the Independent Autism Coordinating Committee (I-ACC). This development has sparked heated debate within the community regarding the future of autism research and advocacy in the United States.
A Shift in Leadership and Direction
Kennedy’s appointment of new members to the IACC has raised eyebrows, particularly for the committee’s now diminished representation of autistic individuals. Previously, the IACC was mandated to include three autistic members; however, following Kennedy’s changes, this number has dwindled significantly, with many critics labelling the committee a “sham.” The IACC plays a critical role in directing nearly $2 billion in federal research funding on autism and can influence policies across a host of sectors, including education, healthcare, and social services.
Critics highlight that several new appointees have espoused anti-vaccine sentiments and promoted discredited treatments, such as industrial bleach enemas and chelation therapy. Matt Carey, a former IACC member, expressed his fears, stating, “The IACC is selected to give him the answers he wants,” referring to Kennedy’s apparent predilection for aligning the committee’s findings with his own controversial views on vaccines.
The Emergence of the Independent Autism Coordinating Committee
In response to the growing unease regarding the IACC’s direction, the Independent Autism Coordinating Committee was formed on 3 March 2026, with a mission to advocate for evidence-based research on autism. This new body aims to provide recommendations for private donors and institutions, distancing itself from the perceived biases of the federal committee. However, the I-ACC also faces scrutiny; critics point out that it includes only one autistic member and is pushing for a separate “profound autism” category, which many in the community find scientifically unfounded.
Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, voiced her concerns, stating, “There’s not many autistic people there, fewer than even the fraudulent IACC has, which isn’t a good look.” The framing of autism into categories like “profound” or “severe” has been branded by some advocates as a policy debate masquerading as a clinical discussion, with critics arguing that it could lead to increased segregation and institutionalisation of autistic individuals.
Implications for Future Research and Advocacy
The implications of these developments are far-reaching. The federal IACC, established under the Combating Autism Act of 2006, originally aimed to address autism as a pressing public health issue. However, under the current administration, experts worry that the committee is reverting to outdated narratives, which could detrimentally affect funding and research priorities.
Alison Singer, president of the Autism Science Foundation and a founding member of the I-ACC, argued that Kennedy’s push to investigate the causes of autism warrants attention. Yet, her stance has been met with resistance from autistic advocates, who argue that the focus should instead be on inclusion and support within communities, rather than on prevention.
David Mandell, a founding member of the I-ACC, emphasised the need for a research agenda that is firmly rooted in science. He noted that the committee must ensure diverse representation and genuine engagement with all perspectives, stating, “We’re really very focused on: ‘What should the research agenda be?’”
Why it Matters
The restructuring of autism advisory bodies in the US epitomises a broader struggle within the autism community—a struggle between traditional narratives shaped by historical biases and a growing movement for inclusion and evidence-based research. As the IACC and I-ACC navigate these turbulent waters, their decisions will significantly impact funding priorities and the lived experiences of millions of autistic individuals across the country. The direction taken by these committees could either reinforce harmful stereotypes or pave the way for a more inclusive and scientifically informed approach to autism advocacy and research.
