RFK Jr. Seeks Broad Access to Health Records for “Autism Research”
The National Institutes of Health (NIH) is collecting sensitive medical records from federal and commercial sources for Department of Health and Human Services Secretary Robert F. Kennedy Jr.’s new “autism research” initiative, which will give external researchers access to “comprehensive” patient data, representing “broad coverage” of the U.S. population.
The NIH will also be creating a national registry to track Americans with autism, which will be integrated into the sweeping federal data collection effort.
According to officials, the initiative will connect a wide range of personal health information, including prescription histories from major pharmacies, genetic and lab data from patients within the Veterans Affairs and Indian Health Service systems, insurance billing records, and data collected from wearable devices like fitness trackers and smartwatches. The NIH is also negotiating with the Centers for Medicare and Medicaid Services to expand existing data-sharing agreements.
Kennedy, a longtime promoter of disinformation about autism, has been condemned for his ableism by disability rights advocates. He has said that “autism destroys families,” has repeatedly endorsed debunked theories linking vaccines to autism, and has portrayed autistic people in profoundly dehumanizing ways.
In a recent press conference, Kennedy responded to new CDC data indicating an increase in autism diagnoses by declaring autism a “preventable disease” and an “epidemic”— claims unsupported by medical consensus. Kennedy claimed that “environmental toxins” cause autism, disregarding extensive research that has found no such link. Nevertheless, he has pledged to identify the “cause” of autism by September.
Alycia Halladay, chief science officer at the Autism Science Foundation, has explained that the rise in autism diagnoses is largely due to better access to services and decreased stigma — not an actual increase in the condition itself. “[The CDC] report is the most convincing evidence yet that changes in factors like access to services and de-stigmatization of [autism spectrum disorder] are leading to the increases in prevalence,” she said. “But changes in prevalence should not drive how or what we study to find the causes of autism.”
The CDC itself has stated that the rise in autism diagnoses is largely due to improved screening and awareness — directly contradicting Kennedy’s claims that there is an autism “epidemic.”
While Kennedy often speaks about autism as a singular, devastating diagnosis, experts emphasize that it encompasses a wide spectrum of experiences. “[A]utism isn’t a single thing; it is a word we use in an attempt to capture a spectrum of behavioral strengths, differences, and vulnerabilities in order to help optimally support children,” said Zachary Warren, a pediatric psychiatrist and autism expert, in an interview with NPR .
Lisa Settles, director of Tulane University’s Center for Autism and Related Disorders, added in an interview with CNN, “To me, it’s very obvious that [Kennedy] doesn’t know a lot about the diagnosis,” she said. “He’s pulling things together into a theory that isn’t based in any ounce of science, and it’s really frustrating to those of us who are professionals.”
At the conference, Kennedy claimed that: “These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go on a date. Many of them will never use a toilet unassisted.” This is clearly untrue — many autistic people do engage in these activities, and those who don’t can still lead full, happy lives with the right support, advocates emphasize.
“We have to recognize we are doing this to our children, and we need to put an end to it,” Kennedy added. Notably, Kennedy has proposed that families of autistic people are “injured” and should receive financial compensation — despite receiving pushback from families who say that they are “outraged and disturbed” by his ableist comments.
Disability organizations have firmly pushed back on RFK’s ableist and inaccurate claims about autism. “Claims that Autism is ‘preventable’ is not supported by scientific consensus and perpetuate stigma,” organizations that advocate for autistic people said in a joint statement. “Language framing Autism as a ‘chronic disease,’ a ‘childhood disease’ or ‘epidemic’ distorts public understanding and undermines respect for Autistic people.”
In fact, Kennedy has gone so far as to compare autism to the COVID-19 pandemic, baselessly claiming that autism is actually more dangerous. “[Autism] dwarfs the COVID epidemic and the impacts on our country because COVID killed old people. Autism affects children and affects them at the beginning of their lives, the beginning of their productivity,” he recently said on a radio show.
COVID-19, which has killed over 7 million people globally, continues to affect millions through long COVID, with symptoms ranging from fatigue and brain fog to chronic pain and mental health conditions. Notably, Trump has removed the United States from the World Health Organization, which continues to monitor the effects of COVID-19.
Disability advocates argue that rather than investing in surveillance-style data collection or reviving long-debunked theories, the federal government should be focusing on supporting the needs of autistic people. This includes funding home care, accessible education, and individualized services. However, the Trump administration has stalled disability rights cases, moved to cut health care funding, and is attempting to dismantle disability protections in public schools.
“Robert F. Kennedy Jr. could help the country take a step forward if he listened to families, caregivers, health care providers, and scientists who actually understand autism and are doing the work to identify its cause or causes. He could help the country move forward if he insisted that HHS invest in home care and individualized supports for people with disabilities” said Sen. Maggie Hassan (D-New Hampshire) in a statement “[Instead,] Secretary Kennedy is using a position of great power to continue to exploit the vulnerabilities of millions of Americans, all for the purpose of spreading his own unfounded and fully debunked beliefs.”