A federal autism research initiative backed by Health and Human Services Secretary Robert F. Kennedy Jr. has ignited a wave of criticism from disability advocates, privacy watchdogs, and even members of Kennedy's own family, after reports surfaced of a planned national autism registry and controversial public remarks by the health secretary.
On Tuesday, CBS News reported that the National Institutes of Health, operating under HHS, is preparing to launch a centralized platform to track Americans diagnosed with autism as part of a broader data-collection effort to support a new federal study into the condition's causes. CBS cited NIH Director Dr. Jay Bhattacharya, who said the initiative will integrate data from private insurance claims, pharmacy chains, smartwatches, and agencies like the Department of Veterans Affairs and Indian Health Service.
"The idea of the platform is that the existing data resources are often fragmented and difficult to obtain," Bhattacharya said during a presentation to NIH advisers. "The NIH itself will often pay multiple times for the same data resource."
Kennedy has said the department aims to identify the cause of autism by September. In a statement on April 15, he declared, "The autism epidemic has now reached a scale unprecedented in human history because it affects the young. The risks and costs of this crisis are a thousand times more threatening to our country than COVID-19. Autism is preventable and it is unforgivable that we have not yet identified the underlying causes."
Public response to the plan has been swift and emotional, with critics warning of potential civil rights violations. "This isn't about health. This is about control. It's about fear. It's about marking people," one X user posted. Another, Richard Angwin, wrote: "RFK Jr.'s autism registry is a chilling overreach... It's not about health; it's about control."
Gun reform advocate Fred Guttenberg also condemned the plan, calling it "designed to hurt people." The Center for Disease Control and Prevention estimates that 1 in 31 children were diagnosed with autism spectrum disorder in 2022, up from 1 in 150 in 2000.
Kennedy has drawn additional criticism for hiring David Geier-a figure previously denounced for administering puberty blockers to children with autism-to lead the federal study.
Adding to the controversy, Kennedy's cousins Anthony K. Shriver and Timothy P. Shriver published an open letter on the Best Buddies website denouncing the secretary's recent comments suggesting children with autism "will never pay taxes" or "write a poem." The Shrivers called such language "hurtful misconceptions" and warned, "Slurs and statements that demean, devalue, demonize and identify people with intellectual and developmental differences as hopeless are not only inaccurate but... deeply damaging."
"People with autism can and will continue to date, hold jobs, marry, and pay taxes," they wrote. The brothers emphasized their family's legacy of inclusion, referencing the founding of the Special Olympics by their mother, Eunice Kennedy Shriver.
Maria Shriver commented in support of the letter on Instagram: "Proud of both of you... proud of our family's work in this space that you both continue [to] carry on."
The NIH confirmed it will provide access to federal and commercial data to support Kennedy's autism study. Despite assurances from Bhattacharya that participants' confidentiality will be maintained, the lack of clarity surrounding consent and data governance has fueled growing concern.
