Health and Human Services Secretary Robert F. Kennedy Jr. is launching a national autism registry, raising major concerns about privacy, scientific credibility and the rights of disabled individuals. While CBS News reported on the plan, no official announcement has been made.
Kennedy’s plan involves gathering private medical data from federal and commercial sources. The goal, as stated, is to help identify the causes of autism — a mission that echoes outdated, discredited theories. The NIH has confirmed it will assist by compiling these records, which will then be shared with researchers selected by the administration.
However, there is little clarity on how these researchers will be chosen, what oversight exists and whether the individuals whose data is being used will be informed or allowed to opt out. These are critical questions, especially under an administration with a poor track record of transparency and respect for scientific norms.
Kennedy’s recent comments have only deepened concerns. In his first press conference as HHS Secretary, he claimed that autistic individuals “will never pay taxes,” “never write a poem” or “never go on a date.” He painted autism as something that “destroys” families. These statements are not just offensive — they are false. A 2023 study by the CDC and university researchers found that only about 25% of autistic people have severe limitations, and even so, autism alone does not dictate their quality of life. Autistic people do not match the picture Kennedy described.
Even more troubling is that Kennedy’s plan comes as the administration proposes sweeping cuts to disability services. Draft budget documents show plans to eliminate funding for autism research, special education programs and services supporting people with disabilities. The Department of Education — which serves over 7 million students with disabilities — also faces proposed cuts, while responsibility for some of these services is being shifted to HHS under Kennedy’s leadership.
The contradiction is glaring. The administration claims to support families affected by autism while actively dismantling the very programs that help them. They dismantle evidence-based services and replace them with flawed, ideological efforts, then attempt to claim credit for “helping.”
The Trump administration’s broader record does not inspire confidence either. It has undermined public health, slashed medical research funding and banned diversity, equity and inclusion initiatives — programs that directly benefit disabled communities. Trust in this administration’s handling of sensitive health data is already low.
NIH Director Dr. Jay Bhattacharya recently stated the registry’s purpose is to streamline access to fragmented data. Centralizing such sensitive information without clear safeguards could do more harm than good — especially if it is used to advance harmful narratives rather than science-based solutions.
Finally, Kennedy has promised a series of studies to pinpoint “environmental toxins” as the cause of autism despite overwhelming evidence that autism is a complex condition with no single cause. This pursuit risks fueling misinformation and stigmatizing autism even further.
At its core, this initiative is not about helping families but about dehumanization and control. It is about collecting data without consent, pushing questionable science and cutting essential support systems, all while claiming moral high ground. People with autism — and the broader disability community — deserve better than this.
