RFK JR dated view of Autism

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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.”

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.”

Erin McCanlies was listening to the radio one morning in April when she heard Robert F. Kennedy Jr. promising to find the cause of autism by September. The secretary of Health and Human Services said he believed an environmental toxin was responsible for the dramatic increase in the condition and vowed to gather “the most credible scientists from all over the world” to solve the mystery.

Nothing like that has ever been done before, he told an interviewer.

McCanlies was stunned. The work had been done.

“That’s exactly what I’ve been doing!” she said to her husband, Fred.

As an epidemiologist at the National Institute for Occupational Safety and Health, which Kennedy oversees, McCanlies had spent much of the past two decades studying how parents’ exposure to workplace chemicals affects the chance that they will have a child with autism. Just three weeks earlier, she’d been finalizing her fourth major paper on the topic when Kennedy eliminated her entire division. Kennedy has also overseen tens of millions of dollars in cuts to federal funding for research on autism, including its environmental causes.

He remains skeptical of the scientists who have been funded by his own agency to study the neurodevelopmental condition. “We need to stop trusting the experts,” he told right-wing host Tucker Carlson in a June interview, going on to suggest that previous studies that found no relationship between vaccines and autism were marred by “trickery” and researchers’ self-interest.

In contrast, Kennedy told Carlson that under his leadership, and with a new, federally funded $50 million autism research initiative, “We’re going to get real studies done for the first time.”

Some autism researchers fear that the effort will manipulate data to blame the condition on vaccines. “Kennedy has never expressed an open mind, an open attitude towards what are the fundamental causes of autism,” said Helen Tager-Flusberg, a Boston University psychologist who founded a coalition of scientists concerned about his approach to autism. In a June statement, the group said the initiative lacks transparency and that Kennedy “casually ignores decades of high quality research that preceded his oversight.”

As Kennedy promotes his new initiative, ProPublica has found that he has also taken aim at the traditional scientific approach to autism, shutting down McCanlies’ lab and stripping funding from more than 50 autism-related studies. Meanwhile, he has stood by as the Trump administration encourages the departure of hundreds of federal employees with experience studying the harm caused by environmental threats and rolls back protections from pollution and chemicals, including some linked to autism.

Genetic factors account for a significant portion of autism cases. Research like the kind McCanlies and other government-funded scientists have conducted over the past two decades has established that environmental factors have a role, too, and can combine with genetics. Multiple factors can even converge within the same individual. Some of those environmental risks could be reduced by the very measures the Trump administration is rolling back.

Kennedy would have been well positioned to advocate for researchers looking into the environmental causes of autism while sitting on President Donald Trump’s cabinet.

The nephew of President John F. Kennedy and son of his former attorney general, Bobby, Kennedy spent decades as an attorney battling some of the world’s most notorious corporate polluters. Once heralded by Time Magazine as one of the “heroes for the planet,” he railed against actions by the first Trump administration, complaining in his 2017 introduction to the book “Climate in Crisis” that 33 years’ worth of his work was “reduced to ruins as the president mounted his assault on science and environmental protection.”

But recently he has remained publicly silent as the Environmental Protection Agency halts research and weakens regulations on air pollution and chemicals, including some McCanlies and her colleagues have identified as possible factors in the development of autism.

“I don’t think he’s aware of my work,” McCanlies said, “or most of the literature that’s been published on what the causes of autism are.”

McCanlies was studying how a toxic chemical, beryllium, causes chronic lung inflammation in workers when she began to think seriously about autism.

It was 2005, and her college-age stepson had a job shadowing children with autism. As he described helping them navigate playground dynamics, reminding them to return a wave or a greeting, McCanlies wondered whether their behaviors might be tied to chemicals their parents had encountered on the job. Could the exposures have altered genes their parents passed down? Could they have infiltrated the kids’ developing brains through the womb or through breast milk?

The questions remained abstract until McCanlies met another researcher named Irva Hertz-Picciotto, who had a unique data set. She had collected detailed information on the occupations of two large groups of parents: those who had children with autism and those whose kids developed neurotypically. Comparing the groups’ chemical exposures before their children were born could help illuminate causes of the condition, McCanlies realized.

Hertz-Picciotto, an environmental epidemiologist based at the University of California, Davis, was a pioneer in the search for the causes of autism. In 2009, she published a much-cited paper highlighting a sevenfold increase in diagnoses in California. While others had asserted the rise was due to increased awareness and broadened diagnostic criteria, Hertz-Picciotto found those factors could only partially explain it. She and others went on to document additional contributors to autism risk, including parental age at the time of birth, a mother’s fever during pregnancy and more traditional environmental considerations, such as chemical exposures.

McCanlies hadn’t studied autism. But she offered Hertz-Picciotto her experience in genetics and epidemiology as well as the considerable resources of her agency. NIOSH was established in 1970 to investigate the dangers of the workplace, and its statisticians and industrial hygienists were among the world’s experts on the health impacts of chemical exposures.

Their first collaboration, published in 2012, used Hertz-Picciotto’s data to see if parents of children with autism were more likely to have been exposed to chemicals already thought to be dangerous to the developing brain. The work was technical and time-consuming, but the analysis showed a clear relationship: Mothers and fathers of children with autism were more likely than the parents of unaffected children to have been exposed to solvents such as lacquer, varnish and xylene on the job. These solvents evaporate quickly and can be easily inhaled or absorbed through the skin. Chemical plant workers, painters, electricians, plumbers, construction workers, cleaners and medical personnel are among those who may be exposed to these solvents.

The sample size was small — just 174 families. But the results lined up with recent findings showing possible links between autism and exposure to metals and certain solvents during pregnancy or early childhood, including a solvent called methylene chloride. They also tracked with studies linking the chemicals to miscarriage, reproductive problems, birth defects and developmental problems other than autism.

McCanlies and Hertz-Picciotto followed up with a 2019 study that looked at more than 950 families. It showed that women exposed to solvents at work during pregnancy and the three months leading up to it were 1.5 times more likely to have a child with autism than women not exposed to the chemicals. (The study did not find a link for chemically exposed men.)

Their third study, published in 2023, took the link between solvent exposure and autism as a starting point. Using blood samples to examine the genetic makeup of the parents of children with autism, McCanlies and Hertz-Picciotto found that when exposed to solvents on the job, people with specific variants of 31 genes had an especially elevated risk of having a child with autism. Their genetic makeup appeared to increase the risk that solvents by themselves posed. Some of those 31 genes help cells connect with one another; others play a role in helping cells migrate to different areas so they can grow into the various parts of the brain; still others ensure that cells clear away toxic substances.

Researchers were also making strides under the National Institute of Environmental Health Sciences, a division of Health and Human Services, which has financed investigations into dozens of environmental contaminants. Several have been linked to autism, including air pollution, certain pesticides, a plastic additive known as BPA and diesel exhaust, which causes “autism-like behavioral changes” in mice. In 2021, Hertz-Picciotto co-published a study linking “forever chemicals” called PFOA and PFNA with the condition. (In 2023, a second paper also found an association with PFNA.) Other government-funded research has established a link between autism and another solvent, trichloroethylene, also known as TCE, which has been used for dry cleaning, manufacturing and degreasing machines.

Together, the results have shown that many exposures can increase the likelihood of autism, and that there can be multiple causes for any one person.

At least one exposure can have the opposite effect: A study by a researcher named Rebecca Schmidt — and funded by the NIEHS and NIH — found that a B vitamin called folic acid was associated with a significant decrease in the chances of an autism diagnosis. More than a dozen studies have since confirmed the association.

One problem hung over much of autism research. The sweeping diagnosis includes everyone from people who treasure their neurological differences to those with debilitating symptoms, including repetitive behaviors, excruciating sensitivity to touch and sounds, and difficulty responding to social situations. McCanlies and Hertz–Picciotto wondered whether certain chemicals were linked to the most severe cases or to specific symptoms.

In 2023, they set about finding out.

They were preparing to submit their study for publication when newly inaugurated Trump put Kennedy in charge of America’s health.

Despite having made chronic health conditions the focus of his agenda, Kennedy has quietly abided environmental policies that will exacerbate these problems, including autism.

The Environmental Protection Agency, under Administrator Lee Zeldin, is rolling back rules and regulations that will result in an increase in air pollution, which multiple studies have linked to autism. The agency is in the process of reversing bans on several chemicals, including TCE, one of the solvents associated with the disorder, and has told a federal court it won’t legally defend certain aspects of a ban on methylene chloride, another of the solvents linked to autism. It also began dismantling its Office of Research and Development, which has funded research into the environmental conditions contributing to autism. According to an EPA spokesperson, more than 2,300 workers have so far elected to leave the agency through Trump administration programs encouraging early retirement and resignation.

The EPA also began canceling grants, including one it had given to Schmidt, the researcher who studied the protective effect of folic acid. Schmidt had been awarded $1.3 million to determine whether air pollution from wildfires might increase the risk of various neurological conditions. Schmidt and her colleagues had just done preliminary analysis and found that there was a significant association between wildfire pollution exposure and autism when she received a letter saying that the grant was terminated because the project was “no longer consistent with EPA funding priorities.” After a judge ruled in a class-action lawsuit on behalf of University of California researchers alleging their funding was unlawfully terminated, her grant was reinstated last month. But the EPA has appealed the judge’s ruling, leaving Schmidt unsure about the fate of the project.

Schmidt said there is an urgent need to finish the study and warn people about how to avoid the dangers from wildfire smoke by staying indoors and using air filters and N95 masks. “Millions of pregnant women are getting exposed as we speak,” she said.

Meanwhile, Kennedy has presided over his own gutting of research. Known for sharing videos of his bare-chested workouts, he likened his agency’s cuts to getting rid of “unhealthy fat,” but his plan to reduce the staff of HHS by 20,000 amounts to slashing the workforce by roughly a quarter, including veteran scientists. Among the divisions Kennedy eliminated was one that studied air quality and collected data on chemicals found in human blood. Some workers in the division were subsequently reinstated. After a lawsuit and pressure from Congress, HHS has also rehired some NIOSH workers, though none at the division where McCanlies worked. Those whose jobs have not been reinstated remain on administrative leave.

The reorganization plan for HHS involves consolidating the remnants of these parts of the agency, along with several others, into a new division called the Administration for a Healthy America. Asked about the transition, an HHS spokesperson told ProPublica in an email that the reorganization would save taxpayers $1.8 billion a year and that “critical programs will continue.”

Housed under the National Institutes of Health, Kennedy’s new $50-million Autism Data Science Initiative is looking to fund two- to three-year research projects that plumb large public and private datasets to find “possible contributors to the causes of autism” as well as conduct research on existing treatments.

With the deadline for his promised discovery fast approaching, Kennedy recently acknowledged that his initial six-month timeline was overly optimistic. He told Carlson he should have “some initial indicator answers” about the causes of autism by September, his original deadline, and promised unqualified answers within another six months.

While the NIH typically releases the names of the scientists on the committees that review grant applications and the criteria they use to review them, it has not done so in this case. Nor has the agency clarified what role NIH staff will have in awarding the grants, who will make the final selection, or what terms and conditions researchers must agree to if they receive funds. HHS did not respond to ProPublica’s questions about who will make the final grant selection and why the agency has not yet made this information public, but a video NIH created for applicants of the funding acknowledges that reviews of the proposals “do not follow the traditional NIH review process.” According to the video, the process was “designed to ensure integrity, fairness and transparency.”

Hertz-Picciotto, who laments the fact that Kennedy is “shutting down good studies,” is among the researchers in her field who have decided to apply for the funding. “Some of his agenda is really ridiculous and very counterproductive,” she said. “But if something good can be done with this money, I’d like to be part of that.”

If her project is approved, she plans to hire McCanlies to consult on it.

McCanlies said she agreed to work on the project because she has complete confidence in her longtime colleague, if not the health secretary. “I don’t trust him at all,” she said.

McCanlies had never paid much attention to Kennedy — or to politics. Throughout the seven presidential administrations that governed while she had been at NIOSH, her work had been utterly uncontroversial. But weeks after his confirmation, she knew her job was in peril. She had deleted the first email she received from Trump’s Office of Personnel Management. The tone was so strange and disrespectful, hinting that she might be punished if she didn’t respond by confirming her email address, that she assumed it was a phishing attempt. By the time she received a second, suggesting that she find a “higher productivity” job in the private sector, firings and budget cuts were rolling across federal agencies.

The 58-year-old, who has short, greying hair, hazel eyes and three graduate degrees, hadn’t been ready to leave NIOSH’s Health Effects Lab in Morgantown, West Virginia, a place where she had mentored young colleagues, taught a lunchtime meditation class and helped conduct several yearslong research projects. The lab is also where she met Fred, her husband, another Ph.D. scientist who studied workplace chemical hazards. She reluctantly put in for early retirement just days before the entire lab was dissolved.

McCanlies spent her final days at NIOSH finishing her last paper, which explores the association between workplace chemicals and the severity of autism. Normally, she would have her supervisor sign off on her submission to a journal, but he had already lost his job. The rest of her colleagues were gone, too, and the lab’s hallways were empty as she gave the manuscript a final edit.



Trump’s First EPA Promised to Crack Down on Forever Chemicals. His Second EPA Is Pulling Back.
She felt proud of the study, which answered some of the questions she and Hertz-Picciotto had posed years ago. There were indeed links between exposures and the severity of autism. Parents’ exposure to plastics was “consistently and significantly associated” with lower cognitive scores in their children who had autism, increases in “aberrant behaviors” and deficits in basic life skills, the study found. The exposure was also linked to particular symptoms of autism, including social withdrawal, hyperactivity and repetitive behaviors such as hand flapping and body rocking. Higher autism severity scores and weaker daily living skills were also linked with ethylene oxide. Last year, the EPA imposed stricter limits on the chemical, which is used as a sterilizer. But the agency is now reconsidering those restrictions, and, in July, Trump exempted some of the biggest polluters from them.

The paper, which is now available as a preprint, recommended that regulatory agencies “consider increasing awareness of these hazards and make clear recommendations for implementing protective measures at the worksite.”

Having just watched so many occupational health experts forced to leave their jobs, McCanlies suspected their advice was unlikely to be heeded anytime soon.

President Trump asked Kennedy for a progress update during a Cabinet meeting Tuesday, saying, “The autism is such a tremendous horror show. What’s happening in our country and some other countries, but mostly our country. How are you doing?”

“We are doing very well,” Kennedy responded. “We will have announcements as promised in September, finding interventions, certain interventions, now that are clearly almost certainly causing autism. And we’re going to be able to address those in September.”

During the Cabinet meeting, Kennedy pointed to his oft-repeated evidence of environmental factors contributing to autism rates, noting how diagnosis rates have significantly jumped since the 1970s.

During a rambling press conference in the Texas Capitol, U.S. Health and Human Services Secretary Robert F. Kennedy Jr. blamed low-income Texans' purchase of processed foods on a litany of health problems and launched into a string of unfounded claims about autism.

Gov. Greg Abbott sat beside Kennedy at the event, which was meant to celebrate the Republican governor's signing of three bills tied to Kennedy's Make America Healthy Again agenda. One of those bills is Senate Bill 379, which prohibits Texas SNAP recipients from using their food stamps to purchase candy, soda and other foods deemed unhealthy by the state.

Kennedy arrived around 30 minutes late for the press conference as reporters and Republican politicos milled around the governor's public reception room.

"Taxpayer dollars should not be used to fund chronic health problems in our state," Abbott declared to cheers and claps from the GOP lawmakers arrayed behind he and Kennedy, a Trump appointee who's a high-profile vaccine skeptic with no medical degree.

Even though Abbott made no mention of SB 379 being intended to curb autism, Kennedy — who's known for making broad claims about childhood vaccines being linked to autism— launched into a 10-minute tirade about processed foods destroying the health of American children.

"I got involved with this primarily because I came from a big family … and I never saw anybody with diabetes, never knew anybody with a food allergy, I never knew anybody with autism," Kennedy said.

Kennedy's critics have pointed out that such anecdotal claims are meaningless because autism and food allergies were far less frequently diagnosed by medical professionals in decades past.

"I'm looking at kids as I walk through the airports today, as I walk down the street. I see these kids that are overburdened with mitochondrial challenges, with inflammation in their faces, from their body movements and lack of social connection … I know that's not how our children are supposed to look."

Kennedy then incorrectly claimed that 1 in 25 Texans have autism. In reality, that number is estimated to be about 1 in 31, based on national averages, according to the Autism Society of Texas. Without citing for the source for the statistic, the secretary also went on to assert that 1 in 12.5 boys in California suffer from the neurodevelopmental disorder.

"We know what's making us sick, and we owe it to our children to fix it, to make sure that they're not exposed to these kinds of exposures," Kennedy said. "One of the ways we're going to do that is through the SNAP program the governor just signed."

Abbott didn't mention autism at any point during his discussion of the bills he'd signed. However, he watched Kennedy intently while the secretary spoke.

Even so, some of Abbott's Republican colleagues appeared to agree with Kennedy's remarks, nodding and moaning in agreement with his statements about the health deficiencies of U.S. children.

So. You know what I wonder will crop up as autism and it's causes are being investigated here? And I am on the edge of my seat, no sarcasm, waiting to hear what they discover. I'm truly interested in this. I don't have a problem with anyone investigating anything. All of it brings us more knowledge.

But perhaps when they find "autism" and its cause, they will also discover the "soul" and its cause. Maybe "blackness" and its cause. What if they find "love" or "potential" in there as well?

What will be the CDC code for the soul? What will its spectrum look like? Can we find special rules for people who are determined not to have enough of it?

US Health and Human Services Secretary Robert F. Kennedy Jr. pledged in April that there would be answers on the causes of autism this month. Since then, he has ousted public health officials, publicly rebuked studies showing no link between vaccines and autism, and said “interventions” are “almost certainly” responsible for causing rising autism rates.

And the proposed autism studies have not started.

Thousands of researchers hailing from the top universities and institutions in the country have applied for the federal funding that Kennedy announced in April. The US National Institutes of Health is expected this month to announce up to 25 awardees for the $50 million “massive research and testing effort.”

Among the applicants are longtime veterans of the field from Brigham and Women’s Hospital, Harvard University, Johns Hopkins University, the Icahn School of Medicine at Mount Sinai and the Mayo Clinic, according to document provided to CNN. They also include biotechnology, digital health and gene therapy companies, counseling groups and hospital networks.

Each of the grants is slated for two to three years of studies. Some of the researchers say they can provide analysis a bit faster; none who spoke to CNN says that they can provide firm answers this month. That leaves autism experts confused, and alarmed, about what Kennedy says he already knows about autism — and where that leaves research that has not begun.

“There’s just this inherent contradiction that they are planning to spend $50 million over the next two to three years on the [Autism Data Science] Initiative, when Kennedy has announced he’s already got the answers,” said Dr. Helen Tager-Flusberg, director of Boston University’s Center for Autism Research Excellence. At least 28 researchers affiliated with Boston University or its medical center have applied for these grants, according to the list provided to CNN.

Kennedy’s confidence about previewing autism conclusions this month comes amid broad upheaval for federal health agencies, including the ouster of US Centers for Disease Control and Prevention Director Dr. Susan Monarez, the resignation of many of her top deputies and calls from more than 1,000 current and former HHS employees for Kennedy to resign. Senators say they will question the secretary on the CDC actions on Thursday during a hearing on the president’s health agenda.

“It’s highly unusual to announce you have the results of a study before the study even begins,” said Alison Singer, founder of the nonprofit Autism Science Foundation. At least four foundation-supported researchers have applied for the Autism Data Science Initiative grants.

Kennedy: ‘Interventions’ causing autism
There is extensive existing research showing no link between pharmaceuticals, vaccinations and autism.

But analysis of existing HHS records on vaccine safety was already underway, according to multiple people familiar with internal conversations and the turmoil that saw several CDC officials depart last week.

Geier, a close Kennedy ally and longtime critic of vaccines, has been on the CDC campus for weeks, probing the agency’s data for potential harms from immunizations, according to three people with knowledge of recent events at the CDC.

Dr. Dan Jernigan, a 30-year veteran of the CDC, named Geier’s controversial theories on vaccines and autism when he resigned from his role as director of the National Center for Emerging and Zoonotic Infectious Diseases last week after Monarez’s ouster. Jernigan told the Washington Post that working with Geier — a longtime proponent of the debunked theory that vaccines cause autism — was his last straw, and it raised concerns about privacy, ethics and science.

Jernigan also raised concerns about impending vaccine decisions in an interview with CNN.

“We want to make sure that [Kennedy] supports the use of vaccines. We want to know that he is using science in helping to make those decisions. But at this point, we have been working with the administration providing data. We don’t know exactly what the processes they’re using with that science,” he told CNN’s Kaitlan Collins. “We don’t know exactly how they’re approaching it. If there is going to be some new findings that are released, we are not sure if those are going to be supportive of vaccines and of scientific approach.”

The other autism research initiative
Kennedy had previously told senators that Geier is working as a contractor on data from the Vaccine Safety Datalink, the CDC’s system for post-approval surveillance of immunizations. Launched in 1990, the datalink is a partnership with some of the country’s biggest health care systems, drawing in millions of anonymized patient records.

That makes the datalink unique from the Vaccine Adverse Event Reporting System, which relies on voluntary reports of harms and side effects following immunizations.

The datalink has been a Geier focus for years. The CDC cut off his access to the database in 2004, writing in a letter that there were reports of “potential breaches in confidentiality and execution of analyses.”

Geier, who has a bachelor’s degree in biology, has also been reprimanded by the Maryland Board of Physicians for practicing medicine without a medical license. In April, House Democrats launched a probe into his hiring at HHS.

But Kennedy has forcefully defended Geier, saying there is a medical establishment vendetta against him and his father, Dr. Mark Geier, because of their studies purporting a link between immunizations and autism, as Kennedy claimed in an X post in July.

“A few of Dr. Geier’s studies have revealed inconvenient facts about the use of mercury in American vaccines. These offenses precipitated the vicious campaign to vilify and marginalize the Geiers,” he wrote. “These sorts of public persecutions and gaslightings are now familiar to thousands of doctors and scientists who asked questions about COVID vaccines.”

That defense, and Kennedy’s assertion in August that interventions are “almost certainly” causing autism, has researchers on guard that this month’s announcements are a foregone conclusion —  even as they wait on new research funding.

Many of the researchers have applied to investigate environmental toxins, underlying genetic factors and prenatal exposures that could cause autism, said Flusberg, Singer and other researchers who applied for grants but did not want to speak publicly during the process.

They are hopeful that reputable researchers are given the funds and time to draw definitive data that is reviewed by other scientists. The NIH stated that the Autism Data Science Initiative program will support studies that can be validated and replicated by independent researchers — all work that takes a significant amount of time.

It is not clear which studies the NIH will green-light, making it even less clear what Kennedy is referring to with “interventions” causing autism.

“Someone really needs to ask [Dr. Jay] Bhattacharya, the director of NIH, what he thinks is happening. Why is he investing all of this money and effort into the ADSI when his boss already has all the answers?” Tager-Flusberg said.

Health Secretary Robert F. Kennedy Jr. plans to announce that the use of Tylenol by pregnant women may be linked to autism in children, according to a report Friday in the Wall Street Journal — which the Department of Health and Human Services said was "speculation."

This comes after Kennedy said in April that HHS would undertake a "massive testing and research effort" to determine the cause of autism. Kennedy at the time said the plan was to release a comprehensive report in September. However, National Institutes of Health Director Dr. Jay Bhattacharya said later that month the findings could take up to a year.

Kennedy has in the past made the unfounded claim that autism is a "preventable disease," drawing heavy criticism from many medical experts.

How did Tylenol maker Kenvue and HHS respond to the WSJ report?
In a statement provided to CBS News on Friday, an HHS spokesperson called the Journal's report "speculation."

"We are using gold-standard science to get to the bottom of America's unprecedented rise in autism rates. Until we release the final report, any claims about its contents are nothing more than speculation," the spokesperson said.

n a separate statement in response to the WSJ story, Kenvue, the maker of Tylenol — whose active ingredient is acetaminophen — said that "we have continuously evaluated the science and continue to believe there is no causal link between acetaminophen use during pregnancy and autism. To date, the U.S. Food and Drug Administration (FDA) and leading medical organizations agree on the safety of acetaminophen, its use during pregnancy, and the information provided on the label."

Later Friday, Kenvue said in another statement that "we appreciate the Secretary acknowledging media coverage on the upcoming HHS report is 'nothing more than speculation.'"

What do medical experts say?
The American College of Obstetricians and Gynecologists said in a statement provided to CBS News on Friday that "there is no clear evidence that proves a direct relationship between the prudent use of acetaminophen during pregnancy and fetal developmental issues."

"Neurodevelopmental disorders, in particular, are multifactorial and very difficult to associate with a singular cause," ACOG said. "Pregnant patients should not be frightened away from the many benefits of acetaminophen, which is safe and one of the few options pregnant people have for pain relief."

CBS News chief medical correspondent Dr. Jon LaPook said he is looking forward to reading the upcoming report pledged by Kennedy, "especially the evidence behind any conclusions and recommendations."

"I spoke this afternoon to a researcher who was part of a major study published just last year that followed 2.5 million children in Sweden over 25 years," LaPook said. "He said use of acetaminophen ... was not associated with an increased risk of autism in children."

Autism has become more prevalent in children born in the U.S. over the past 25 years, according to statistics compiled by the U.S. Centers for Disease Control and Prevention. But there is no scientific consensus on the reasons why.

In an interview with CBS News on Friday, Dr. Christine Ladd-Acosta, an associate professor of epidemiology at the Johns Hopkins Bloomberg School of Public Health and the vice director for the Wendy Klag Center for Autism and Developmental Disabilities, said research shows that the causes of autism "are complex."

"There have been a few dozen studies looking at Tylenol and whether use during pregnancy is associated with risk of autism in those women's children, and the evidence has been really kind of conflicting," Ladd-Acosta said. "Some studies have shown no association. Some have shown a positive association. Some have shown negative associations. And I think part of that is because it's really hard to tease apart ... whether it's the medication itself that is influencing autism risk in the child, or if it has to do with the condition ... the mother is using the medicine to treat that is the thing that is important in autism risk."

Ladd-Acosta noted that the dosage, the length of time that pregnant women take Tylenol, and the "specific condition" they are taking it for are all factors that have been considered when attempting to determine if there is a potential association between the medication and autism.

"There have been some associations, but there has been no conclusive evidence I've seen to show that Tylenol itself causes autism definitively," Ladd-Acosta said.

The Trump administration directed the nation's public health and environmental agencies to prioritize investigations into vaccine injuries, prescription drug use and autism's causes in its latest “Make America Healthy Again” report released Tuesday.

The 20-page report, overseen by Health and Human Services Secretary Robert F. Kennedy Jr., echoes many of the talking points Kennedy and those in his wide-ranging and politically diverse “MAHA” movement have united around. The document promises to put an end to childhood diseases and to make children healthier, but does not lay out regulatory changes to ensure an overhaul of Americans' health.

Among the report's recommendations is a call for more rigorous government investigations into vaccine injuries, a move that could stir more uproar as lawmakers raise alarm over how the health secretary's anti-vaccine policies have thrown the nation's public health agency into weeks of tumult.

Kennedy promised to “recast the entire program” for investigating vaccine injuries as he joined administration officials to unveil the MAHA report. Currently, the Centers for Disease Control and Prevention investigates injuries that are reported by individuals or providers.

“They will be welcomed and we will learn everything we can about them so we can improve the safety of these products,” Kennedy said of people who report vaccine injuries. He added that doctors are not currently compensated for filing complaints for vaccine injuries.

An earlier version of the report was first leaked and publicized in August. Slight changes have been made to the final draft, which was developed by a “MAHA” commission that included Kennedy and other members of the president's cabinet. Despite pledging “radical transparency,” the commission never held a public meeting ahead of the report's release.

Among the differences in the final version of the report released on Tuesday is a call for the National Institutes of Health to use personal medical records and health insurance claims data to investigate the cause of diseases and disorders, including autism.

“The NIH will link multiple datasets, such as claims information, electronic health records, and wearables data, into a single integrated dataset for researchers studying the causes of, and developing treatments for, the chronic disease crisis,” the report says.

The “MAHA” report addressed a number of other issues, including ultraprocessed food consumption, water quality, fluoride and the use of prescription drugs in children. Agencies, including the health department and the Department of Justice, should increase enforcement and oversight of prescription drug ads, especially those published by social media influencers and telehealth companies, the report says.

The National Institutes of Health, which is facing a 40% cut to its budget, is tasked with undertaking much of the MAHA-related research in the report.

The HHS intention to award a sole source contractopens in a new tab or window to Rensselaer Polytechnic Institute (RPI) to study an association between vaccinations and autism raised concerns from autism researchers.

"Every aspect of this contract is of grave concern to the Coalition of Autism Scientists" -- a group of more than 250 leading autism researchersopens in a new tab or window -- said coalition leader Helen Tager-Flusberg, PhD, of Boston University

"Awarding a no-bid contract is unprecedented and unwarranted," Tager-Flusberg told MedPage Today. "The research group at RPI does not include the top epidemiologists in the field."

Earlier this year, the NIH asked for proposals for its new Autism Data Science Initiativeopens in a new tab or window (ADSI), a $50 million project to identify possible contributors to the rising prevalence of autism. Up to 25 proposals are expected to receive funding by the end of September. One of those proposals reportedly was from RPI.

The HHS no-bid contract to RPI "is being awarded right before we expect to be hearing from NIH about who will be receiving awards for the ADSI," Tager-Flusberg noted.

"The RPI research group did apply to the ADSI, which leads me to suspect that when their application was not selected for funding by the NIH, the secretary of HHS -- who seems to be determined to re-litigate the role of vaccines in autism -- chose to award them this no-bid contract through the CDC, one of the other agencies that he controls," she said.

The ADSI proposals cover various aspects of autism research and "at least several" include a focus on genetics, noted David Mandell, ScD, of the University of Pennsylvania Perelman School of Medicine in Philadelphia. "We won't know whether HHS is focused on promising areas or wild goose chases until we see the list of what is funded," he told MedPage Today.

"I think that the ADSI initiative and other funding, like the single-source contract to RPI, are coming from different places and have different motivations," Mandell added. "We should know better in a month what the total portfolio looks like and how much of it is driven by good science."

According to the HHS noticeopens in a new tab or window, RPI has a "unique ability" to link children to maternal cohorts using proprietary databases and de-identified data sets. Juergen Hahn, PhD, a specialist in systems engineeringopens in a new tab or window techniques at RPI, has been an author on several papers that aimed to identify correlations between environmental exposures and autism.

Recent work by Hahn includes an evaluation of private insurance records to demonstrate how maternal risk factors differopens in a new tab or window between subpopulations of children with autism spectrum disorder based on diagnostic, pharmacy, and procedural claims.

Hahn is "a biomedical engineer and data science expert who has conducted extensive research focused on autism risk factors," an RPI spokesperson wrote in an email to MedPage Today. "He is renowned for the quality and rigor of his research. If this project is awarded, he intends to publish the results of his work at the conclusion of the project."

HHS also has hired discredited researcher David Geieropens in a new tab or window to help CDC scientists comb through Vaccine Safety Datalink records to see whether a relationship between vaccines and autism exists.

In years past, the American Academy of Pediatrics warnedopens in a new tab or window clinicians about research from Geier and and his father, the late Mark Geier, MD, saying it contained "numerous conceptual and scientific flaws, omissions of fact, inaccuracies, and misstatements."

In recent news from HHS, RFK Jr has revived the idea that using Tylenol during pregnancy is causing autism (it isn’t). This claim has been floating around for years and the research providing the correlation between Tylenol and autism has been widely criticized and a large scale study in 2024 found no link between Tylenol use during pregnancy and autism. Despite that, Kennedy just can’t give up an opportunity to blame mothers for causing autism, whether it’s backed by good science or not. Everything with him and his obsession with autism is about finding a simple, environmental cause for autism that will allow it to be prevented, or better yet, cured altogether. He’s never concerned with how life is going for real autistic people, or how policies might be changed to help them, or changing society to be more accepting. It’s never about helping autistic people. He just wants to find a way, any way, to make sure they stop popping up. His entire project with the anti-vax pseudoscience, the HHS autism registry, his quest for an environmental cause, rejection of mainstream science, everything seemingly, revolves around “NO MORE AUTISTIC PEOPLE.” Weird, isn’t it? Why is that? It didn’t arise out of nowhere.

Autistic people have long been treated as undesirables and even less than human in many cases. As part of the Aktion T4 program, the Nazi’s opening act of the Holocaust, Hans Asperger helped funnel autistic children into “clinics” to be euthanized. The killing involved starvation and medication overdoses, but the clinics also served as the testing grounds for the gas chambers that would later be deployed to the more infamous death camps. Before the Nazis took on the task of exterminating Jews in earnest, they were shuffling autistic and other disabled people into gas chambers to perfect the instruments of industrialized murder. You may recognize the name Asperger since Asperger’s Syndrome was named after him before his connection to the Nazi’s was uncovered. Autistic kids who could speak and were deemed to be intelligent enough were held back from the T4 program and provided the model for what became known as Asperger’s Syndrome.

In friendlier times, here in the US, Ivar Lovaas, a psychologist who pioneered the technique of administering electric shocks to autistic kids to torture them into compliance, had this to say about autistic children:

...you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose, and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person You have the raw materials, but you have to build the person.

That was in 1974, but using dehumanizing language to describe autistic people didn’t stop then, unfortunately. Dehumanizing language about autistic people was common with researchers and academics, and has only been addressed as a real problem in recent years.

In his 2002 book, The Blank Slate, linguist Steven Pinker wrote

A mind unequipped to discern other people’s beliefs and intentions, even if it can learn in other ways, is incapable of the kind of learning that perpetuates culture. People with autism suffer from an impairment of this kind. They can grasp physical representations like maps and diagrams but cannot grasp mental representations … Together with robots and chimpanzees, people with autism remind us that cultural learning is possible only because neurologically normal people have innate equipment to accomplish it.

When it comes to understanding culture, often regarded as a distinctly human attribute, Pinker categorizes autistic people with robots and chimps. A 2005 paper titled Language Impairments in ASD Resulting from a Failed Domestication of the Human Brain argues that autistic brains have not “self-domesticated” as typical human brains have, which can explain language deficits. Like Pinker, a comparison to great apes is made:

We expect that the same factors that prompted the transition from an ape-like cognition to our specific mode of cognition are involved in the etiology of cognitive disorders involving language deficits and, particularly, of ASD

Another paper published in Behavioral and Brain Sciences in 2005 also provided an exhaustive comparison between great apes and autistic children in the context of cultural cognition. You may be noticing a pattern. Dehumanization in academic literature was widespread and not just limited to comparisons to animals and robots.

The issue of dehumanization and ableism in autism research has been recognized as a problem more recently after years of pressure from autistic self-advocates, and as autistic scientists have become more prevalent and vocal themselves. It’s still a problem, to be sure, but progress has been noticeable and Kennedy’s attitudes are no longer accepted as the norm nor met with applause. One of the other benefits is that autistic perspectives are increasingly being included in research. Historically, autistic people have been treated as research subjects and their experiences have been inferred based on observation. This is one reason that misguided beliefs about theory of mind and autistics’ incapacity for empathy were once so prevalent. Autistic people were treated as unreliable self-observers: their statements about their own experience of the world were rejected out of hand. That practice, also, is beginning to change.

When the anti-vax panic of the 2000’s took hold, parent-led autism advocacy organizations began gaining traction. Although they were steeped in anti-vax pseudoscience, they also prioritized finding a cure for autism and supported research to further those goals. It was natural for them to adopt the dehumanizing language and attitudes prevalent in the scientific community of the time. Kennedy followed suit. In a 2013 talk at an Autism One conference, he had this response to a question about why the CDC did not refer to autism as an epidemic (video):

To me this is like Nazi death camps, what happened to these kids. 1 in 31 boys in this country, their minds are being robbed … I can’t tell you why somebody would do something like that. I can’t tell you why ordinary Germans participated in the Holocaust.

This line of thinking continued in a 2015 speech in California:

They get the shot, that night they have a fever of a hundred and three, they go to sleep, and three months later their brain is gone. This is a holocaust, what this is doing to our country.

So you can see, speaking about autistic people as being mindless, comparing being autistic to something like being forced into a concentration camp and marched into a gas chamber was not just a random, inarticulate thought in 2013. This is how he thought about autistic people, and how he continues to think about them. Just like Lovaas, he views them as having bodies, but being otherwise unhuman. They move about and make noise, but have no thoughts or feelings or capacity for love. These statements are even more chilling considering what the Nazi’s actually did to autistic people. Although there was some criticism of Kennedy when he made those statements, there were many who agreed with his sentiments.

The audience at the Autism One conference applauded his opinion because dehumanizing language about autism was rampant within “advocacy” organizations at the time (primarily led by non-autistic people). In the 2006 documentary Autism Every Day, a mother even mused about filicide in front of her autistic daughter. Many autistic people will be also be familiar with an ad made by Autism Speaks in 2009, entitled I am Autism. If you aren’t autistic, there’s a good chance you haven’t seen it read the transcript below:

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.

On its face, this might appear somewhat softer than Kennedy’s statements, but the real problem is that it demonstrates a complete lack of empathy for the experiences of autistic people. It’s ironic that autistic people are stereotyped (incorrectly) as having no empathy, but those who insisted on advocating on our behalf 15 years ago felt no need to exhibit empathy themselves.

“I am Autism” isn’t about autism — it’s about being autistic and the the pain that it imposes on everyone else who wishes that we weren’t. Kennedy wasn’t involved with producing I Am Autism, but you can see parallels with the language he uses and the narratives he peddles: autism is represented as a tragic disease that will destroy families and lives.

When Kennedy isn’t dehumanizing autistic people, he also traffics in pseudoscience and ableist tropes about autism to promote his ideas about an autism epidemic and the need to find and eliminate environmental causes for autism. He did this efficiently on the Joe Rogan podcast in 2023:

I bet that you’ve never met anybody with full-blown autism your age. You know, head banging, football or helmet on, non-toilet-trained, nonverbal. I mean, I’ve never met anybody like that my age. But in my kids’ age now one in every 34 kids has autism and half of those are full-blown, meaning that description.

I’m not even going to list out evidence that autistic people have been around for a long time, even before the Nazi’s got a chance to kill some, because the belief that they didn’t exist before vaccines came along has been debunked plenty of times before. Aside from the incorrect suggestion that half of adult autistic people have to wear helmets, are non-verbal and can’t use a toilet, there are some other good reasons it used to be uncommon to encounter autistic people with severe disabilities out in public.

But none of that is important to Kennedy — his goal is conveying an image of disgust: full grown adults wearing helmets, soiling themselves and unable to speak. That’s what he wants us to believe will be coming for society if autism isn’t stamped out.

It’s certainly true that some autistic people have problems with self-injury, toileting, or are non-speaking, but that isn’t all there is to them. They also have thoughts and feelings. They communicate even when others have trouble understanding. They have have the capacity to love and to be hurt. And we have found that many non-speaking individuals are able to communicate quite well with assistive technology.

Of course, people with those traits only represent a fraction of autistic people. By stating that such a narrow range of behavior is “full-blown autism” and represents half of all cases, he’s effectively sweeping everyone else under the rug and drawing a line between who’s really autistic and who isn’t.

One sign of a true ally is a desire to prioritize acceptance and support for autistic people who are alive now. Kennedy has shown no interest in that. He sees autistic people as objects of disgust, the unhumans using up resources and wreaking havoc on unfortunate host families. Support and acceptance are not needed because according to his conception, autistic people cannot have lives worth living. This is why he has a singular focus on preventing autism and preventing more autistic people from existing. It isn’t to help, but to alleviate his own disgust.

A final note on the I Am Autism video and the state of the modern research community… Autism Speaks finally apologized for producing the video after 15 years. They have asked that people refrain from reposting it, but I feel that it’s important to maintain a record of the stigma that autistic people have been working against for so long. Similarly, the quotes from scientific literature were included to give an idea of how widespread dehumanizing language was when RFK Jr began his own autism agenda. Unlike Kennedy, the scientific community has listened to autistic people and now includes many allies. There are certainly problems still because change can be slow, but the positive progress should be recognized.

In general I don’t have a problem with finding out reasons why things happen. These explanations can help people. My problem in this case is with the people doing the investigating. 1. I expect them to find what they want to find 2. I expect them to use these findings to at best attempt to make us as neurotypical as possible 3. To promote harmful quack cures for personal profit.

Last night my husband told me he was now taking MORE Tylenol so he can increase his power level.

Health Secretary Robert F. Kennedy Jr. and his staff are working on policy changes that would sweep children with autism spectrum disorder into a federal program that compensates people for alleged vaccine injuries, an adviser said Thursday.

Changes to the list of compensated injuries in the 1990s has made it nearly impossible for children with encephalopathy — a broad term for brain dysfunction — to win awards through the Vaccine Injury Compensation Program, Drew Downing, a vaccine injury lawyer who now serves as a senior adviser to Kennedy, said at an autism discussion hosted by the MAHA Institute. The group backs the secretary’s agenda.

“Part of what Secretary Kennedy is doing right now — and with my help, and we have a team looking at it — is we have to figure out a way to capture these kids,” Downing said.
“If you don’t want to use the ‘A word,’ whatever, that’s fine,” he said, referring to autism. “How do we capture them: do we broaden the definition of encephalopathic events? Do we broaden neurological injuries? How do we do that?”

Public health experts and program lawyers have warned that adding autism to the compensation program would exhaust the court’s workforce and financial resources. VICP currently has about $4 billion on hand.

Downing didn’t provide more details, but Kennedy made similar complaints about compensation for brain dysfunction in a July interview with the late conservative activist Charlie Kirk.
“What we’re going to try to do is to make sure that the parents who do get injured get compensation, that they get it very quickly, and they get it without the kind of adversarial impediments that have now been erected over the past 40 years,” Kennedy said.

Downing recalled his experience around the omnibus autism proceedings in the 2000s — a multi-year effort by a federal court to manage more than 5,000 claims filed by families arguing certain vaccines caused their children’s autism. The court’s special masters ruled against compensation in all cases, finding the science didn’t support their arguments.

“Since that time, autism is the ‘A word’ that you’re not allowed to utter within the vaccine program realm because you will be vilified, as you guys know,” Downing said.

“But autism is simply a collection of symptoms — collection of symptoms that place someone on a spectrum of neurological disease” that can be caused by “any number of things,” he added.

Genetic research for autism IS a dead end! As a person with a serious genetic disease, I take offense at genetic screening. That's no way to live. People need to stop thinking this way.

And clearly I don't think RFK is going to whip out some magic solution in a few months like he thinks. But I'm completely fine with letting him try. Like PLEASE look into the data. PLEASE replicate the studies. We need this done. We need to know that XYZ vaccine is safe, or could be made better, or whatever. This is important!

What if some of these younger people who have been diagnosed with everything under the sun do not actually have some or all of their diagnoses? What if they have something different, or just less of their diagnoses? For example, what if a person diagnosed with ASD and ADHD actually just had Asperger's, but that diagnosis no longer exists. Maybe being treated as a person with Asperger's would be more appropriate. What if a person who is assumed to be a non-verbal autistic actually has some kind of environmental brain damage and is not autistic at all? Such a thing may be correctible if caught in childhood. This is actually super important, what he's looking into.

Anyone who dismisses the importance of replication in scientific research is either an idiot or a person with a hidden agenda. We have to constantly recheck these things. Does anyone else remember when we thought a brontosaur couldn't stand outside of a body of water because it was too heavy? Thank goodness we did a recheck on that.

Really guys, don't get caught up in the personality of the representative. I get that RFK is a little weird and says things offensively. But he's not the one in the lab coat doing the work. Let's just see some of this play out and see what comes out of it.