HHS pursues theory that autism is linked to a toxin — experts are not so sure

Key takeaways:

• The prevalence of U.S. children with autism has been increasing and is now about one in 31.
• HHS will look into environmental toxins potentially causing this increase, but experts say this is likely not the case.

HHS Secretary Robert F. Kennedy Jr. declared that the new administration will identify an environmental toxin causing autism in a matter of months, but experts said the goal is illogical and unrealistic.

New data from CDC’s Morbidity and Mortality Weekly Report showed that, in 2022, the prevalence of autism among children aged 8 years was 32.2 per 1,000 children — or about one in 31. This is up from one in 36 in 2020. In a press conference, Kennedy said autism “is a preventable disease” that has become an epidemic, citing fewer diagnoses in the past.

“The trend is consistently upward, and most cases now are severe,” he said.

Benjamin J. Schindel, MD, MPH, an assistant professor at the Johns Hopkins University School of Medicine and a neurodevelopmental disabilities specialist at the Kennedy Krieger Institute, told Healio “it is true that the data have shown a steady increase in diagnoses of autism among children for many years.”

The administration’s interest in addressing the uptick in autism cases “is an opportunity to make a meaningful difference as long as this research is done carefully and scientifically,” Schindel added.

Kennedy called the prevalence of autism a “tragedy.” He said it “destroys families” and “destroys our greatest resource, which are children.”

“These are children who should not be suffering like this… many of them were fully functional and regressed — because of some environmental exposure — into autism when they were 2 years old,” he said. “These are kids who will never pay taxes, 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. We have to recognize we are doing this to our children, and we need to put an end to it.”

Arthur L. Caplan, PhD, a professor and founding head of the division of medical ethics at NYU Grossman School of Medicine, told Healio that it is critical to recognize that this is not the reality for all people diagnosed with autism, as it exists on a spectrum.

“He is stereotyping and failing to acknowledge the range here of what autism means, and many parents are terrified that what he’s going to do is create discrimination against their children, not help them,” Caplan said. “Autism isn’t always stigmatized or a source of shame; there are numerous people who have greatly influenced our lives who are clearly autistic but functioning at a high level.”

Caplan said part of the reason for the increase “that has to be acknowledged” stems from greater awareness and acceptance of the condition, leading to more diagnoses.

“It isn’t always a negative diagnosis; it may just be a diagnosis of a difference,” he added.

Competing theories

David W. Goodman, MD, LFAPA, an assistant professor in the department of psychiatry and behavioral sciences at the Johns Hopkins School of Medicine, previously told Healio that documented increases of other illnesses — for example, a spike in ADHD diagnoses in adults — stem from greater awareness and reduced stigma among clinicians (meaning, those illnesses have always existed but until recently went undiagnosed).

“As psychiatric illnesses are better defined, and those definitions are then conveyed to clinicians who see patients, the clinicians are better aware of how to identify and offer treatments,” Goodman said. “Historically, if you go back to schizophrenia, bipolar disorder, depression, ADHD and, now, autism, the pattern is very similar. As clinicians become better educated, their awareness is heightened, they’re better able to make diagnoses, and therefore more people get diagnosed and the prevalence rates appear as if they’re increasing.”

Kennedy pushed back against the “ideology” that increases in autism prevalence can be attributed to better recognition and changing diagnostic criteria, asking “Why is this only happening in young people?” That there are not documented dramatic increases in diagnoses among older people, he said, is proof of an environmental toxin seemingly targeting youth.

“Clearly … this is coming from an environmental toxin, and somebody made a profit by putting that environmental toxin into our air, our water, our medicines, our food. And it’s to their benefit to say, ‘Oh, … this is all normal. It’s always been here.’ But that’s not good for our country,” Kennedy said. “If you accept the epidemic deniers’ narrative, you have to believe that … thousands of profoundly disabled children were somehow invisible to doctors, teachers, parents. … Doctors and therapists in the past were not stupid. They weren’t missing all these cases.”

But Caplan said better and changing diagnostic criteria “isn’t any ideology” — it is reality.

“The experts who diagnose autism will tell you they’re changing the diagnostic criteria and that they’ve gotten broader. The experts who diagnose and treat autism will tell you that there are more parents willing to bring their kids to be diagnosed and some even eager to get their kids diagnosed … because it brings benefits that they think are good for their kid — for example, longer time to do a test,” Caplan said. “A disease that used to be hidden away and stigmatized has now become part of the culture.”

Goodman compared this with adult ADHD.

“Nobody was really talking about ADHD in adults over the age of 50, and we could all throw up our hands and say, ‘Well, I don’t know anybody who’s 58 or 62 with ADHD.’ Sure. You don’t see what you don’t know,” Goodman said. “It’s not as though it wasn’t there. It’s that we hadn’t turned on the light to see that it was there.”

Schindel said “there is no question” that changing diagnostic criteria have led to the upward trend in autism diagnoses. It may not explain all of the increase, but “from a scientific perspective, I think it is too premature to hinge any epidemiologic changes on toxins.”

Caplan also noted that, realistically, there are probably multiple causes and combinations of factors that lead to various degrees of autism.

“It’s not like Huntington’s disease, where you have a gene and the mind falls apart and it always happens, and it goes through the same sequence of events,” Caplan said.

Goodman also stressed that the new data from the CDC must be viewed within the context of international research.

“If you look at international research, prevalence rates have increased. So, rather than get into the weeds of what’s going on in the United States, we need to look at it as a disease state that is recognized internationally, whose rates have been increasing internationally,” Goodman said. “When you broaden out the discussion in that way, then you have to include a broad range of international factors in considering the etiology.”

From that viewpoint, the idea of an environmental toxin causing autism “just doesn’t hold water,” Goodman said. “It doesn’t make sense from a scientific point of view because it’s a hypothesis in search of data.”

Logistics and ethics

Although he emphasized his belief that an environmental toxin is to blame, Kennedy said HHS plans to “follow the science no matter what it says,” and “we will have some of the answers by September.”

“Within … weeks, we’re going to announce a series of new studies to identify precisely what environmental toxins are causing it. This has not been done before. We’re going to do it in a thorough and comprehensive way, and we’re going to get back with an answer to the American people very, very quickly,” Kennedy said.

But this is “just not a realistic timeline,” Goodman said.

Caplan agreed and noted that the timeline undermines the complexity of autism.

“If somebody has a definitive answer in 4 months, I will go to their Nobel Prize ceremony at my own expense,” he said. “No one’s going to answer any question that has been [asked for] decades in 4 months. If you say you can answer a question in 4 months, you already have appointed somebody to answer the question.”

Caplan also questioned the money backing this research in light of considerable cuts to academic institutions in the U.S. Kennedy said HHS will issue grants “the way it’s always been done to university researchers and others,” but this will “be an evolving process.”

“It’s one thing to say, ‘We’re going to have a war on cancer, and I’m going to budget a billion dollars to do it,’” Caplan said. “I don’t take seriously announcements that you’re going to solve a very difficult science question in 4 months without telling me where’s the money.”

“You’re taking away the tools to do what you say you want to do,” he continued.

Ultimately, Caplan stressed that “it’s great to try and figure out and help find roads to reduce dysfunctional forms of autism,” but it also begs the question: What is he or the rest of the administration doing to help kids with severe autism and their families? (Kennedy made no comments on this during the press conference and HHS has not responded to Healio’s request for comment by time of publication.)

“What I see is shutting down federal agencies that deal with disability, cutting back on mental health programs and threatening to cut Medicaid,” which children with disabilities often rely on,” Caplan said. “You want to give me a speech about autism, you tell me both what you’re examining to try and figure out what’s going on and then tell me what you’re doing to help those who are struggling.”

“You shouldn’t get away without having to answer that,” he continued.

Schindel said the administration “has a tremendous opportunity to make a huge difference in the way care is delivered to children with autism.

“My sincere hope is that their emphasis on understanding developmental disabilities will help to support and bolster the primary care health care sector,” he said.

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For more information:

Arthur L. Caplan, PhD, David W. Goodman, MD, LFAPA, and Benjamin J. Schindel, MD, MPH, can be reached at primarycare@healio.com.