Health and Human Services Secretary Robert F. Kennedy Jr.’s inquiry into the causes of autism has caused significant anxiety among advocates of people with the condition. 

On the one hand, a serious government-led investigation into the reasons for the rise in prevalence of autism could benefit people with autism and their families. On the other hand, they fear it could result in fresh misunderstandings about the lives of autistic people — and even, in the case of probing its genetic origins, give rise to the possibility of using genetic testing to selectively abort autistic children. 

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Kennedy has made the autism epidemic a crusade in his career, with much of his advocacy work since the early 2000s involving the debunked theory that vaccines cause autism and other neurodevelopmental disorders. 

In April, the Centers for Disease Control and Prevention announced new research that the prevalence of autism in children in the United States had risen to 1 in 31, up from 1 in 150 in 2003. Kennedy said during a press conference announcing the new statistic that autism is “a spectrum of injuries” from environmental toxins and a “preventable disease.”

“Autism destroys families. More importantly, it destroys our greatest resource, which are our children,” said Kennedy, going on to say that autistic children will never pay taxes, hold a job, write a poem, or “use a toilet unassisted.”

Autistic self-advocates and parents of children with severe autism told the Washington Examiner that Kennedy’s rhetoric is deeply troubling and misrepresentative of the experience for autistic people and their families. 

Some say that Kennedy’s language smacks of eugenics, the notion that people with “undesirable” traits should be fixed or eliminated.

This has been a particular concern for those opposed to the push for genetic research on the causes of autism, for fear that embryonic testing and selective abortion could be used to prevent autistic people from being born, much like what has happened to people with Down syndrome in certain countries. 

With the National Institutes of Health’s new $50 million in research grants to study the causes of autism, advocates say the need for moral clarity in autism research is greater than ever.

What we know about genes and autism

The science isn’t settled on the causes of autism, but what scientists do know of the genetics involved gives reason for concern within the autism community about the possibility of selective abortion for autism diagnoses.

Kennedy said in his April address that studying the genetic foundations of autism “is a dead end,” but decades of research have uncovered hundreds if not a thousand genes thought to be connected to autism spectrum disorder. 

Joseph Buxbaum, a molecular geneticist who runs the Seaver Autism Center for Research and Treatment at Mount Sinai Hospital in New York, told the Washington Examiner that scientists in the field have determined that genetic variations can cause autism in two different ways.

The most common, and least understood, genetic drivers of autism involve what geneticists call polymorphisms, small variations across hundreds of different genes that add up to clinically present themselves as autism symptoms.

Height and eye color are common examples of polygenetic traits, influenced by thousands of genes. Buxbaum says that “a large fraction of the risk for autism is just like height.”

“It extends across the genome, lots and lots of things of tiny effect that all act together to push somebody more towards the autism traits or not,” he said. 

The other genetic pathway toward autism involves a particular mutation on a gene, or a set of mutations on various genes. Scientists have identified roughly 250 genes that, with mutation, account for most symptoms of the more severe forms of autism, including intellectual disability, language delay, and motor delay. 

Buxbaum said that roughly 30% of people with autism, particularly those with higher support needs or who are nonverbal, have specific genetic mutations that “accounts for a significant part of their autism.” 

A handful of single-gene mutations or single-chromosome disorders have been found to be associated with autism, including Angelman syndrome, tuberous sclerosis, and Fragile X syndrome. These account for roughly 15% to 20% of all cases of autism, according to the National Fragile X Foundation.

Genetic research and selective abortion

In February 2005, Buxbaum made a prediction in a media statement that embryonic genetic testing for autism would be possible in 10 years. By May 2005, autism advocate Meg Evans sounded the alarm about the possibility of selective abortion for autistic people with the provocative “The Autistic Genocide Clock,” counting down to 2015.

Twenty years later, Buxbaum says it is indeed possible to test for single-gene variations, like Fragile X, that result in severe developmental delays, lowered IQ, and inability to live independently — symptoms that are often linked under the umbrella term “profound autism.”

“As we find new genes that cause developmental delay syndromes, they are being tested for right now, and they have been since long before I made that statement, and they will continue to be,” said Buxbaum.

But for embryonic genetic testing for polymorphisms, the multiple small gene variations across the genome that add up to autism, Buxbaum says scientists are “far away from being able to do that.” 

“Assume we’ll get better and better, but again, it’ll be like this person is somewhat more likely than not,” Buxbaum said. “That’s not going to change anybody’s — I shouldn’t say that. It shouldn’t change anybody’s decision-making process.”

With respect to the choice to selectively abort a child with profound autism, Buxbaum said “that’s a social question.”

Environmental triggers and genetic mutations

Kennedy has maintained throughout his advocacy career and as HHS secretary that the rise in autism diagnoses in the 21st century cannot solely be a genetic cause. Rather, he postulates that some environmental factor has triggered a wave of genetic mutations that cause autism and other neurodevelopmental conditions.

“We know it’s an environmental exposure, it has to be,” Kennedy said in his April speech. “Genes do not cause epidemics. It can provide vulnerability, but you need an environmental exposure.”

Zoe Gross, director of the Autism Self Advocacy Network, told the Washington Examiner that she finds Kennedy’s insistence on an environmental toxin as the cause of autism as resembling eugenics.

“When Secretary Kennedy talks about finding an environmental cause of autism, he immediately follows up by saying ‘and we must prevent whatever we find,'” said Gross. “So he’s 100% talking about preventing people from becoming autistic when he talks about environmental causes.”

Gross’s organization, along with several others, denounced Kennedy’s rhetoric in April as “unacceptable.”

“Autistic and other disabled people belong in our society. To claim otherwise, and to speak as though our existence is some kind of calamity that must be eliminated, is a form of eugenics,” ASAN wrote in April.

Genetic-based treatments 

Despite the potential risk of eugenic uses for autism genetic research, scientists and autism advocates say it is essential to help develop treatments for the most severe symptoms associated with autism, such as self-harm, depression, and aggression.

NIH Director Jay Bhattacharya, in a June interview with Andrew Huberman, said understanding the etiology, or causes, of autism is necessary for the development of treatment across the autism spectrum.

To illustrate the range of the autism spectrum, Bhattacharya gave the example of the quirky, socially awkward Sheldon Cooper on the television show The Big Bang Theory compared to those with severe disabilities.

“It’s very possible the biology is very different for folks along the spectrum, and unless you understand the etiology — it might be different etiology for kids on different parts of the spectrum — then you’ll never have good answers, both for prevention and also for therapies,” said Bhattacharya. 

An NIH spokesperson told the Washington Examiner that the agency “rejects eugenics in any form.” 

“Our research efforts aim to better understand the complex interplay of genetic, environmental, and biological factors that contribute to autism and other neurodevelopmental conditions,” the NIH spokesperson said. “Ethical considerations are integral to all NIH-funded research.”

A lack of research for profound autism

Judith Ursitti, president of the Profound Autism Alliance, told the Washington Examiner that ending genetic research on autism simply because of the risk that it could be used to justify selective abortion is to throw the baby out with the bathwater.

“What we have to do is focus on finding ways to prevent eugenics while we’re making progress,” said Ursitti. “It’s a tough situation, but humanity is capable of doing good things with powerful science.” 

Ursitti, the mother of an autistic son with high support needs, said Kennedy’s description of people with severe disabilities “did not really respect the dignity of people with profound autism.” Still, she said, she supports the administration’s efforts to improve research on the causes of autism for the purposes of developing treatments for severe symptoms.

PAA has been instrumental in advocating the term “profound autism” and establishing more standardized research criteria. PAA’s definition of profound autism requires that an individual needs 24/7 care from an adult their entire life, has minimal or no language ability, has an IQ below 50, or a combination of all three criteria.

The CDC found in 2023 that roughly 27% of children diagnosed with autism fit the PAA’s criteria for profound autism. PAA’s research has found that individuals with profound autism are only included in 6% of the clinical research on the disorder.

“There is, in our world, a lot of suffering,” said Ursitti. “There’s death, there’s really horrific self-injury. And again, we value human beings that have profound autism. We love them. We want them to contribute to the world. But the suffering has kind of been pushed to the side a little bit.”

Ursitti highlighted that there are no pharmaceutical options on the market for autism-related aggression or depression symptoms, but understanding the etiology of autism could result in autism-specific pharmaceuticals or therapies. 

Treating symptoms versus finding a cure

Gross said she interprets Kennedy’s rhetoric on autism as reflective of the desire for a cure. That, Gross said, is unhelpful, especially for parents of children with autism.

“I think that people are looking for a cure because they’re being told a lot of things that make them really anxious about their child’s future,” said Gross. “They’re told that if their kid misses certain developmental milestones, it’s too late for them to have a good quality of life.” 

Gross said even if there were some sort of genetic alteration that could somehow “cure” her of autism, she thinks “the person you were left with really wouldn’t be me.” 

“I just don’t think that there is inside me a non-autistic person waiting to get out,” Gross added.

Kaelynn Partlow, an autistic therapist and autism awareness content creator, told the Washington Examiner that more research funding should be directed toward improving accessibility for individuals on the spectrum rather than “chasing a hypothetical answer that may never come or may be used in harmful ways.”

When asked for her thoughts about a treatment or so-called cure for autism by removing an environmental toxin or exposure, Partlow said she was not optimistic but that she’d support it.

“If it were determined to be an environmental cause and an actionable change was made, I would be in support of it,” she said. “I am not delusional enough to believe autism is a ‘gift.’”

Research priorities across the spectrum

Autism self-advocates who spoke with the Washington Examiner said they believed more resources were necessary to support autistic people and their families across their lifetimes.

Partlow shared her experience as a therapist aiding both adults and children with varying autistic characteristics. She works with and makes online content for Project Hope Foundation, an organization that supports the needs of autistic people their whole lives.

“Autism doesn’t end at 18. Most policies focus on children, but autism is lifelong,” said Partlow. “Many, possibly even most, autistic adults are unsupported, unemployed, or living in poverty due to a lack of appropriate services.”

Only 19% of young adults with autism live independently. This varies widely based on socioeconomic status, ethnicity, and level of communication skills. Roughly 26% of autistic young adults received no social services support for employment, education, or independent living in their early 20s.

Gross said there is not enough funding for improvements in occupational therapy and tools to assist autistic people with high support needs. She also said there are several other unanswered biomedical research questions for people with autism throughout their adulthoods, from experience during pregnancy to dementia risk.

“These, I think, are many of the most pivotal quality of life questions that could really make a difference in the lives of autistic people who are living today, which is, I think, or should be, the primary goal of autism research,” said Gross. 

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While there is significant debate within the autism community about research priorities, all sides hope that researchers put autistic people first.

“Understanding autism should never come at the cost of supporting autistic people,” said Partlow.