RFK Jr.’s Autism ‘Registry’ Angers Advocates, Researchers

To assist him in his quest to determine the cause — or causes — of autism by September, Health and Human Services Secretary Robert F. Kennedy Jr. and his hand-picked researchers will have access to a so-called “disease registry” of people living with autism, National Institutes of Health (NIH) Director Jay Bhattacharya announced on Monday. 

Speaking at a meeting of NIH advisers, Bhattacharya also laid out plans for a soon-to-be-launched “real-world data platform” which will collect and compile private medical records from several federal and commercial databases to support Kennedy’s autism research program, CBS News first reported.

All of this comes during Autism Acceptance Month, and less than a week after Kennedy’s inflammatory remarks at a press conference, where he said that “autism destroys families,” and that people with autism “will never pay taxes,” hold a job, write a poem, or go out on a date. 

Later, a spokesperson for the Department of Health and Human Services clarified that Kennedy “was referring to those that are severely affected by this chronic condition” and that “this was in no way a general characterization,” but it still didn’t sit well with members of the autism community, like parents, researchers, and advocacy organizations. “Harmful rhetoric has real-world consequences,” says Christopher Banks, president and CEO of the Autism Society of America. “Autistic individuals and their families are left feeling dehumanized, devalued, and blamed.”

A ‘disease registry’ for autism

The idea of a “disease registry” containing information about people living with autism didn’t sit right with many parents of children with autism.

“[Tuesday] we had parents call our center in a panic, asking if they could get their children’s medical records erased,” says an autism researcher, who asked Rolling Stone for anonymity because in the current climate it’s unclear what the impact could be of speaking out. “We had several people who had been waiting many months to get a diagnostic evaluation call to cancel because they are afraid that their children will be unsafe if they are on an autism registry.” Because an autism diagnosis can unlock access to support and effective treatment, this could prevent families from getting the resources they need, she says.

For parents like Lauren Colley — whose seven-year-old son has autism — the notion of “disease registries” for autism are frightening. “When I hear things like that as a parent, it’s terrifying,” she says. “It makes me feel as though my son is going to be subjected to all kinds of hatred and labels and othering that he does not deserve. It very much feels as though my son is in danger — that he’s being almost hunted down in order to be somehow taken away or fixed or any other number of horrible things.”

But registries like this aren’t uncommon. “Autism registries are very important for research — especially on complicated neurodevelopmental disabilities like autism,” the same autism researcher tells Rolling Stone. Some existing registries have been built up over decades, with families giving informed consent for their personal information to be used for research, she explains.  

According to Bhattacharya’s announcement, these “disease registries” — which will exist for other conditions as well, though he didn’t specify which — will enable faster drug development, provide long-term data, and launch research programs. He didn’t discuss how the data in these registries will be anonymized, what the consent process will look like, and what will happen to the data when the research is completed. 

“Conceptually, registries can be great research tools and can really advance knowledge, but they come at great risk, and we have to be extremely careful,” says Raymond Romanczyk, PhD, co-director of the Institute for Child Development at Binghamton University. “When we’re discussing research plans like a government registry, you have to involve people with autism.”

While surveillance is a recognized tool in health research, the current approach “appears more retrospective than forward-looking,” Banks says. The proposed registry is especially troubling given the recent dismantling of the Office for Human Research Protections (OHRP), which historically upheld ethical standards for research involving human subjects. “Many autistic individuals and community members are justifiably hesitant to disclose their diagnosis to government entities due to fears of data misuse, discrimination, or surveillance,” he adds. 

The ‘real world platform’

The registry isn’t the only tool Kennedy will have at his disposal for autism research. Bhattacharya also announced that the NIH will create a “real world platform” with data from electronic health records, pharmacy chains, smartwatches, fitness trackers, and health organizations, including the Department of Veterans Affairs, Defense Health Agency, and Indian Health Service. The platform will have “access to labs, imaging, genomics, claims and billing data — which often provides detailed diagnostic information,” he said.

Bhattacharya claims that the platform “will preserve the privacy of patients” by removing identifying information from the records, and that researchers will not be able to download the data. It will, however, be accessible to the between “10 to 20 groups of researchers” that Kennedy selects to conduct his autism studies.

According to Romanczyk, HIPAA permits the use of deidentified data. “But we have to be careful about what we mean by ‘deidentified,’” he says, as “AI systems and machine learning can glean a lot of information about a person with very little context.”

Before news of the “disease registry” and NIH database broke, the focus was on the inflammatory remarks that Kennedy made at last week’s press conference. Parents like Ray Hemachandra — whose 24-year-old son Nicholas has autism and an intellectual disability — are pushing back against Kennedy’s declaration that “autism destroys families.” “Nicholas did not destroy our family,” Hemachandra tells Rolling Stone. “Rather, he is the heart of it. He is a brave, kind hearted, and loving man.”

Similarly, Marla Bautista, the mother of a 15-year-old son with autism, is concerned that Kennedy’s comments will make life harder for people living with autism. “I’m worried that RFK Jr.‘s actions are inciting greater prejudice and further stigmatization toward individuals with autism,” she tells Rolling Stone. 

For Colley, Kennedy’s comments about autism have been disheartening. “Things like the press conference have been pretty earth-shattering and harmful and hurtful to those of us who are living this on a day-to-day basis,” she says.

Andy Shih, chief science officer of Autism Speaks, says that the organization has heard a range of reactions from parents in response to Kennedy’s recent remarks. While some didn’t appreciate how autism was portrayed, others — particularly those raising children with high support needs, including intellectual disabilities, limited communication, and needing 24/7 care — “said his comments resonated with their lived experience,” Shih says.

That was the case for Linda Moffitt, the mother of a 25-year-old son with severe autism who is nonverbal and requires constant care and supervision. “RFK Jr.’s comments about the limitations autistic people face reflect my son’s reality,” she tells Rolling Stone. “While autism has not ‘destroyed’ my family…it has put a strain on my family both financially and socially.” 

But it’s important to keep in mind that autism exists on a spectrum, from extremely high-functioning individuals, to those with higher support needs. Kennedy, for the most part, has been speaking about people with autism as if they were a homogenous group and a burden, leaning into outdated stereotypes. “When autism is framed only through the lens of hardship or loss, it can unintentionally overlook the joy, growth, and fulfillment that many autistic people and their families experience,” Shih says.

Colley agrees. “To say that [people with autism are] destructive towards a family or harmful for our world — that language is really ableist and doesn’t encapsulate the amazing things that all autistic people can bring to our world, regardless of [their] levels of support needs,” she says.

Kennedy’s research agenda

In theory, the more we learn about autism the better. But Kennedy has made it clear that he is approaching autism research with an agenda.  

At his press conference last week, Kennedy downplayed the role genetics play in autism, noting that “genes do not cause epidemics,” and referring to studying genetic causes of the condition as “a dead end.” For this reason, his upcoming autism research initiative will focus on “identify[ing] precisely what the environmental toxins are that are causing it,” rather than genetic factors, or ways to support people living with autism. Kennedy also promised rapid results, with some questions answered by September. Of course, it’s still unclear how realistic this is — the announcement about Kennedy’s research program comes after the Trump administration slashed funding for autism research across the Department of Education, National Science Foundation, Department of Defense, and NIH.

Either way, this approach is a mistake, according to Romanczyk, who believes that when it comes to autism research, “a multi-pronged strategy” is preferable to “putting all your eggs in one basket.” 

While it’s widely accepted that autism is caused, at least in part, by genetics, as Romanczyk put it, “that doesn’t mean it’s the whole story.” The anonymous autism researcher agrees, and notes that “for all the complexity of the genetics of autism, environmental factors are far more complicated” and warrant research. 

But there’s also a need for research aimed at improving the lives of people living with autism. “Focusing on making lives better today is also urgent,” she says. There has been significant progress in autism diagnosis, intervention, and support over the last 30 years, thanks in large part to the investment of the federal government in high-quality research, she notes. “We need to make that investment count and work on ensuring autistic people and their families have access to diagnosis and effective supports,” the researcher adds. 

Kennedy has yet to reveal who will be conducting this research — and therefore have access to the database of private medical information — other than tapping prominent vaccine skeptic  David Geier to oversee research looking into debunked claims that there’s a link between vaccines and autism. Researchers are worried that Kennedy’s hand-picked researchers will ignore science and focus on their own agenda. “I’m all for research, as long as it’s objective and comprehensive and we’re not dealing with speculation [and] anecdotal information,” Romanczyk says.

But given Kennedy’s misleading claims about autism and its causes, Colley isn’t convinced that the findings of the research will actually benefit autistic people and their families. “That, for me, is the part that is really difficult, because it very much feels like nobody asked us,” she says. “Nobody asked autistic people what they thought. Nobody asked what parents of autistic kids wanted.”