People I enjoy!

Posted by Caren Zucker

https://www.theatlantic.com/health/archive/2025/07/rfk-jr-autism-insar/683438/?utm_source=feed

The annual meeting of the International Society for Autism Research is the closest autism science gets to having an Oscars moment of its own. When 2,200 experts from more than 50 countries meet up in one place—as they did this spring in Seattle—a kind of brainy excitement pervades, not just because of the awards given out (yes, awards are given out) or the chance for up-and-comers to network with top names in autism research, but also because there’s always something to celebrate in the science itself. For two decades, studies presented at INSAR have shaped the world’s understanding of autism. The buzz at the conference comes from the conviction that the work matters and that progress continues, sustained by an optimism that no nonscientist could undo.

With one possible exception: U.S. Secretary of Health and Human Services Robert F. Kennedy Jr.

In April, shortly before the conference, Kennedy announced a major research undertaking. He promised that his agency would determine the cause of autism—or, at least, have “some of the answers”—by September. (He soon extended the timeline into next year.) The effort, he pledged, would employ “the most credible scientists from all over the world.”

Now here those scientists were, all in one place. But none of those we spoke with had received the call to help, nor did they expect to. In speeches and interviews as health secretary, Kennedy has made clear his disdain for mainstream autism research, brushing aside the insights gained for this tremendously complex condition through years of research. Instead, backed by the enormous power of his federal office, Kennedy now appears determined to pursue his own long-held set of theories about autism: first, that we are in the midst of an autism epidemic (which is, in fact, highly debatable); second, that autism is caused by one or more “environmental toxins” (which incorrectly suggests that environmental factors have not been explored); and third, that powerful interests want this information covered up (a conspiracy-esque viewpoint that lacks evidence).

“The way the secretary characterizes autism research,” David Amaral, the research director at the MIND Institute at UC Davis and one of INSAR’s co-founders, told us, “it’s as if nobody’s been doing anything for the last 30 years.” Amaral was one of more than a dozen veteran researchers we met with over the four-day conference, whose faces all went dark anytime we asked about the impact of Kennedy’s muscling into their domain. They have been witnessing the health secretary bend the narrative of autism science in America. Their shared assessment: What he’s doing is not good.

The problem begins, in the researchers’ view, with Kennedy’s grasp of the science, which they say he either doesn’t understand or refuses to acknowledge. For instance, Kennedy has complained that too much money has been spent studying genetic causes of autism, describing this avenue as “a dead end.” Between sessions at the conference, the geneticist Joseph Buxbaum sat with us in an empty meeting room and sketched out on a piece of cardboard the numbers and timeline that demonstrate all that’s wrong with this viewpoint. Autism’s genetic underpinnings were first uncovered through studies of twins in the 1970s. Access to the human genome has now revealed that about 80 percent of the odds of being autistic are rooted in heritability. At INSAR this year, one of the most optimistic presentations focused on the progress being made toward genetics-based treatments. “It is shocking,” Buxbaum said of Kennedy’s apparent disregard for experts’ input.   

Compounding the situation are the Trump administration’s blitz of DEI-focused executive orders and DOGE cuts, which are undermining autism research. The Autism Science Foundation has been circulating a questionnaire asking researchers to report funding lost this year. Dozens of responses have been received, so far adding up to more than $80 million worth of halted research and pending grants that now will not come through. Jobs have been lost. Future discoveries have been postponed, possibly for good.

Emily Hilliard, a spokesperson for HHS, told us in an email that Kennedy’s team is “fully committed to leaving no stone unturned in confronting this catastrophic epidemic—employing only gold-standard, evidence-based science.” It’s unclear just whom Kennedy is relying on for scientific expertise; Hilliard did not address a request for more information about the scientists involved in the health secretary’s initiatives. But Kennedy’s singular view on the actual expert consensus seems driven by a personal goal: to implicate vaccines as the cause of autism. He now has reshuffled the ranks of the CDC’s vaccine-advisory committee to include scientists who lack expertise on vaccines and have shared anti-vaccine views, and he has reportedly appointed the son and frequent collaborator of an anti-vaccine activist—one who long promoted false ties between vaccines and autism—to begin examining federal databases for evidence of such a link.

Kennedy has long been a prominent advocate of this false conviction. A quarter century ago, the now-discredited British researcher Andrew Wakefield claimed to have discovered a temporal association between administration of the MMR (measles, mumps, rubella) vaccine and the onset of autistic symptoms in young children. Thus began a self-perpetuating cycle. The greater the number of parents who decided to refuse the MMR vaccine, the more the news media saw a valid trend story. Only four months after Wakefield published in The Lancet, MMR vaccinations had dropped almost 14 percent in South Wales. The fear soon crossed the Atlantic, and Kennedy himself brought further mainstream attention to the issue in “Deadly Immunity,” a 2005 article for Rolling Stone and Salon. (Both publications later retracted the story.) Books were written about the supposed danger. Documentaries were made. Protests were held.

It’s hard to remember now, but up until that time, most people had never heard of autism. Almost overnight, parents everywhere became scared of the word, and scared of what a doctor’s needle might mean for their child. This fear had obvious downsides—the stigmatization of autistic people as being “damaged,” a drop in vaccine uptake broadly, a loss of faith in science, and a sense that something dangerous had been let loose upon the population and especially children. But something constructive came from all the attention to the issue as well. Parent activists jumped on it to pressure Congress to start funding autism research. The money began flowing in earnest in 2006, with a five-year $945 million allocation, and has since reached a total so far of roughly $5 billion, funding university labs and research centers around the U.S. The investment paid off: Autism became better understood. The vaccine question was a top priority out of the gate, and epidemiological research found repeatedly, exhaustively, and emphatically that vaccines do not cause autism.

Clearly, however, RFK Jr. is not satisfied.

When Kennedy speaks today about autism, it’s as though the past 20 years never happened. It’s not just about the canard that is being resuscitated. It’s the language he uses to talk about what he thinks being autistic means. At a press conference in April, he set off a firestorm in autism communities when he described children with autism as “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 out on a date. Many of them will never use a toilet unassisted.”

Tragedy framing, sorrow inducing—this echoes the 20th-century take on autism, when people with the diagnosis were too often treated as not fully human. Many were subjected to abuse and isolation (often by being institutionalized). After Kennedy received some blowback for his comments, he clarified that he was talking specifically about children on the severest end of the spectrum. Hilliard, the HHS spokesperson, told us that Kennedy “remains committed to working toward a society where people with autism have access to meaningful opportunities, appropriate supports and the full respect and recognition they deserve.” She said his statements aimed to emphasize “the need for increased research into environmental factors contributing to the rise in autism diagnoses, not to stigmatize individuals with autism or their families.”

Nevertheless, the damage was done. Regardless of his intention, the ways Kennedy speaks about autism seem to miss how, for many, the prevailing narrative has moved on to more human framing, in which autism is not a disease or a tragedy but a difference meriting acceptance and support. His bleak terminology—autism is “a disease”; it “destroys families”; “we need to put an end to it”—has left a mark. Amy Gravino, who is autistic and specializes in sexuality and relationship coaching, told us she felt shattered by Kennedy’s comments. “For the last 20 years, we as a community have fought against the rhetoric that RFK is now spouting,” she said. “Everything we have tried to do to humanize autistic people has been potentially wiped away in one fell swoop.”

Many parents, too, took offense at RFK’s flattened portrait of their autistic children as a collection of problems and nothing more. The depiction leaves out everything about these children’s worth as people: their capacity for joy, love, and creativity; their inherent dignity. “If the world uses a lens that is only based on deficits and struggle rather than the complexity and nuance that is a part of any human being, including and especially autistic people, that makes true belonging really hard,” Sara Swoboda, a pediatrician in Boise, Idaho, whose daughter has an autism diagnosis, told us over email.

At the INSAR conference, a pediatrician alerted us to concerns spreading among parents about Kennedy’s plans to create a “data platform” for autism. So far, the National Institutes of Health, the agency overseeing the platform, has outlined this project only vaguely, including that it would involve scraping data from all over the digital landscape—from Medicaid claims, private-sector health records, pharmacy chains, insurance billings, and even smartwatches and fitness trackers. It has not gone over well. The pediatrician shared some of the texts she has been getting from contacts around the country reporting that parents of autistic children were calling their health-care providers and pleading with them to scrub references to autism from their kids’ medical records. Other parents waiting for assessments for autism were calling in to cancel.

When we contacted nearly a dozen doctors and advocates about this matter, they confirmed getting similar requests from parents in their practices and communities. “People are freaking out, and I don’t blame them,” Alycia Halladay, the chief science officer for the Autism Science Foundation, told us. “For the government to come in with no transparency and say we have the authority to take this data, that is scary to people.” They’re scared of lost privacy, of seeing their kids stigmatized, of consequences related to insurance and job discrimination. But in a bigger sense, they don’t want their kids marked, and scared of a comeback for those old attitudes about autism.  

Data collection in itself need not be a source of panic. It is, after all, the currency of epidemiology. It’s how the vaccine theory was debunked and how the CDC determines prevalence rates. Usually, methods are put in place to ensure anonymity and ethical disbursement of the data. Hilliard told us that “all NIH-managed databases follow the highest standards of security and privacy, with the protection of personal health information as a top priority.” Even if there’s nothing to fear about this new database, however, good results in science depend on trust. That trust now appears to be at risk.

Not everyone thinks Kennedy is getting every part of the story wrong. His clumsily calibrated messaging, though offensive to many, was appreciated by some families who feel seen by the secretary for addressing a segment of the autistic population that still gets minimal attention. These are people whose challenges range from moderate to severe and who, as Kennedy acknowledges, will never achieve real independence. The most challenged—assessed at roughly 27 percent of the autistic population in a 2023 study—are people with IQs below 50 or whose ability in the use of spoken language is minimal to none. Some in this group can also be violent toward themselves, and their inability to understand danger has resulted in their deaths with shocking frequency. They are people who require round-the-clock supervision,

Especially for the families of such individuals, there is a deep frustration that most people no longer associate autism with individuals like their kids. Theirs is not the popular autism story. They get little interest from Hollywood, which best likes narratives about autistic people as fundamentally quirky or brilliant. Science hasn’t shown much interest either, especially social science, whose practitioners find it easier to study people who can hold a conversation and complete a questionnaire. Additionally, parents who risk sharing details of the struggles at home can end up feeling like they’ve violated some sort of taboo, facing social-media pile-ons in which they’re accused of dehumanizing their children by being explicit about autism’s downsides.

Kennedy was explicit about the downsides. In response, Amy Lutz, a medical historian and the vice president of the National Council on Severe Autism, wrote an article titled “RFK Was Right: Severe Autism Can Be Devastating.” Lutz is the mother of an adult autistic man. She argues that Kennedy definitely gets a lot wrong about autism (for example, vaccines), but at least he is “shining a light on the segment of the autism spectrum that has been increasingly marginalized by a focus on the most capable.”

During our last full day at INSAR, we attended a luncheon sponsored by an advocacy organization called Profound Autism Alliance. Seated around three long tables was a group of psychiatrists, psychologists, pediatricians, and educators all involved in serving the marginalized 27 percent. That morning, they had witnessed a milestone in their field: A presentation at the conference had called for formal recognition and definition of profound autism as a new diagnostic category. (How widely this framing will gain acceptance remains to be seen.) Kennedy had no involvement in the presentation, but we asked the group about the health secretary’s role in bringing attention to the profoundly autistic. There was, at best, some grudging acknowledgment that he had done so. But the researchers—whom we agreed not to name so they could speak without fear of professional repercussions—were much more concerned about the harm they feared Kennedy is doing, and will do, by parachuting, uninvited, into their realm. The risk, they said, is not just the harm to science, or potentially to their own work or the careers of those just starting out who may now choose something “not autism” to work on. All of that, they told us, is secondary to the potential harm to autistic people and to those who know and love them.

If faulty science takes charge and finds a cause that isn’t a cause—such as vaccines—it will imply that the easy next step is finding the antidote to the cause. That is a seriously problematic proposition. For one thing, many diagnosed people say they have no interest in becoming unautistic. For another, a one-and-done remedy for the condition’s most debilitating manifestations is, quite simply, a phantom goal. As anyone who has seriously studied autism will tell you, the condition is too complex. As one pediatric neurologist at the profound-autism luncheon put it, “If I had that magic pill, don’t you think I would give it to you?” There is no magic in science, which is why so many researchers think Kennedy’s approach is an exercise in false hope. One thing the neurologist knows after years of treating children herself, she told us, is “there’s nothing worse for a family than to be given false hope.”

https://www.theatlantic.com/health/archive/2025/07/rfk-jr-autism-insar/683438/?utm_source=feed