RFK Jr.’s Autism Registry Proposal Sparks Backlash

A proposed federal initiative to gather data on Americans with autism—dubbed by social media users as an “autism registry”—has sparked widespread backlash this week.

According to reports, the National Institutes of Health (NIH), operating under the U.S. Department of Health and Human Services, is spearheading this effort as part of a broader project aimed at compiling data to advance autism research. The department is currently led by Health Secretary Robert F. Kennedy Jr. Newsweek noted it has not independently verified the CBS report and has reached out to NIH for confirmation.

Why It Matters

Autism diagnoses have been steadily rising in the U.S. The Centers for Disease Control and Prevention (CDC) reports that, as of 2022, one in every 31 children had been identified with autism spectrum disorder, compared to just one in 150 back in 2000.

Kennedy has long described autism as an “epidemic,” attributing its increase to environmental causes rather than genetics—a stance that many scientists and advocacy organizations dispute. Adding to the controversy, Kennedy recently appointed David Geier, previously criticized for controversial autism treatments involving puberty blockers, to oversee a federal investigation into autism’s root causes.

What To Know

Critics have condemned the alleged plan to collect private health information for research purposes, with concerns focused on medical privacy and civil rights. CBS News, citing NIH Director Dr. Jay Bhattacharya, reported that the autism research platform could integrate data from a variety of sources, including pharmacy records, private insurance claims, smart devices, the Department of Veterans Affairs, and Indian Health Service systems.

Despite assurances that confidentiality will be maintained, many online voices expressed concern. One user on X (formerly Twitter) wrote:
“This isn’t about health. This is about control. It’s about fear. It’s about marking people. People like me. Neurodivergent people.”

Activist Fred Guttenberg also weighed in, calling the proposed registry “designed to hurt people.”

Similarly, X user Richard Angwin, who has a large online following, said:
“RFK Jr.’s autism registry is a chilling overreach, tracking private medical data without consent violates HIPAA and echoes eugenics. It’s not about health; it’s about control. Stop this now.”

Official Response

In a statement issued on April 15, RFK Jr. defended the urgency of the study:
“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. We should have had these answers 20 years ago.”

Dr. Bhattacharya added context during a recent NIH advisory presentation:
“The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain.”

Looking Ahead

Kennedy has committed to determining the root causes of autism by September 2025, a timeline that continues to draw scrutiny from experts and activists alike.