Health and Human Services Secretary Robert F. Kennedy Jr. is waging war on autism — and experts say it’s both unscientific and stigmatizing.
The newly appointed HHS Secretary said autism “destroys” children in a recent press conference. He declared 1 in 31 children under 8 are diagnosed with autism — up from 1 in 54 in 2016 and 1 in 150 in 2000.
“This is catastrophic for our country,” he said. “Autism destroys families, and more importantly, it destroys our greatest resources, our children.”
During the conference, Secretary Kennedy also definitively claimed that “we know [autism is] from environmental exposure,” contradicting medical experts and the CDC.
While Kennedy’s 1 in 31 figure is accurate and comes from an April CDC study, his claims about environmental factors directly counter the CDC’s own conclusion from that same study.
“I think he’s shown in multiple arenas, even outside of autism, that he is more into stirring up conspiracies as opposed to information that would be helpful to the public,” Dr. Lisa Settles, Clinical director of the Tulane Center for Autism and Related Disorders, told The Post.
Settles has been researching why autism rates have been increasing for the past two decades and says theories espoused by Kennedy — that it is caused by ultrasound scans, mold, pesticides, food chemicals, medicines, air pollution, and water contamination — are baffling.
“Those of us who are professionals in the field did a collective eye roll, because we know… it’s going to take time and effort and energy away from the types of research that we really need right now,” she said. “I don’t even have any idea where he has gotten mold, pesticides, and ultrasounds from.”
Writing for The Post, NYU Langone doctors concurred: “Given its complexity and the wide range of symptoms, it’s likely that multiple factors contribute. This neurodevelopmental difference is something children are born with — it has nothing to do with parenting style, vaccines or foods.”
Experts generally agree that environmental factors which potentially contribute to autism occur in utero, generally in the late first and early second trimester — not after birth, and that such factors are very small in the causation.
Settles says perinatal factors could be a risk factor, including a lack of oxygen at birth. Certain maternal immune system disorders have also been linked to an increased autism risk.
A small association has also been found between autism and paternal age at time of birth, but multiple studies have yielded conflicting results, meaning any association is likely very small.
And there’s no evidence of major changes in these perinatal factors, and therefore Settles disagrees with Kennedy that the recent uptick in diagnoses is primarily due to environmental factors.
Rather, she says, we’ve better defined what autism is and are detecting more kids with it.
“Pediatricians are screening more. There are structures in place to make sure that we are not missing individuals. There’s more autism acceptance and less of a stigma,” she explained.
Screening initiatives have exploded since the turn of the century — the exact time period that diagnoses shot up.
The CDC launched the “Learn the Signs, Act Early” program in 2004 and also recently unveiled an app that helps parents track whether their children’s development is on track. Meanwhile, the HHS runs a similar initiative, and state Medicaid programs have rolled out regular screening across the country.
A good bulk of the recent jumps in diagnoses occurred in minority communities and underserved neighborhoods, where access to medical resources have expanded in recent years.
“It seems much more likely that it’s an increase in detection and greater awareness and broader definitions,” Catherine Lord, co-chair of the Scientific Research Council of the Child Mind Institute and UCLA professor of psychiatry, told The Post.
Diagnostic criteria has changed dramatically in recent years. A formal autism diagnosis first appeared in the Diagnostic and Statistical Manual of Mental Disorders (DSM) third edition in 1980. The definition of the condition expanded in 1987, 1994, 2000 and in 2013, the DSM fifth edition introduced the “autism spectrum,” which for the first time encompassed “high functioning variations” of autism, including Aspergers.
Kennedy also went on to characterize individuals with autism in extreme terms: “These are 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 on a date, many of them will never use a toilet unassisted.”
Settles says this isn’t reflective of the autism spectrum recognized today.
“Some people on the spectrum are the most brilliant individuals, and some have profound intellectual disability,” she said. “It runs the whole gamut, so to say that the entire population is in that lower 2% is ridiculous, and it’s actually harmful.”
Alison Singer, founder of the Autism Science Foundation, agrees Kennedy’s descriptions of autism “went too far.”
“He made it sound like people with profound autism had no value if they couldn’t pay taxes,” she said. “He made it sound like they couldn’t love, and they weren’t worthy of love. My daughter has profound autism. My older brother has profound autism. They both live lives of meaning and dignity.”
This rhetoric is frightening some in the autistic community, like Morénike Giwa Onaiwu, an autistic woman and mother of two autistic teenagers.
“My child has asked me if there’s a way to remove his diagnosis off of his medical records,” she told The Post. “My 14-year-old baby has asked me this, and I can’t do that. He’s concerned, not because he has a problem with being autistic, but because he’s concerned about how people are going to treat him.”
In spite of the expert consensus, Kennedy is trudging forth with his environmental hypothesis. He announced the HHS would conduct research into whether various environmental factors cause autism, ignoring the wealth of studies from around the world on the subject.
“I think the biggest thing to understand is, even if there is a correlational relationship, that does not mean that this is what is causing autism,” Settles said. “Correlation does not equal causation.”
Such research would also be unethical. “You’re not going to expose people to hundreds of ultrasounds or some kind of toxin,” Lord said. “We can’t ever say environmental effects don’t have any effect, but it seems very likely that, if they do, it’s very small.”
While RFK did not mention vaccines in the conference, he recently appointed a controversial senior data analyst to the HHS, who has long attempted to tie vaccines to autism. According to the New York Times, he will reportedly be researching a link between the two.
“We wasted ten years and probably billions of dollars disproving that vaccines caused autism, and here we are going to have to do it all over again,” Settles said. “It’s not good for the families, it’s not good for science, and it’s taking us back twenty years.”
This also has experts like Kumanan Wilson, the Chief Scientific Officer of the Bruyère Health Research Institute, worried. He was appointed by the Institute of Medicine to do a review on vaccines and autism, which looked at twelve studies and four different hypotheses, and he found no evidence of association.
“Coincidentally, children tend to develop symptoms of autism at the same age that they are typically vaccinated, so you can understand how parents make the connection,” he said. “But even if they weren’t vaccinated, they would still develop symptoms.”
A spokeswoman for the HHS told The Post that the HHS “remains steadfast in its commitment to advancing our understanding of Autism Spectrum Disorder.”
Earlier this month National Institutes of Health (NIH) and the Centers for Medicare & Medicaid Services (CMS) caused controversy by announcing plans to build a “real-world data platform enabling advanced research” into autism, taking data from Medicare and Medicaid, medical records which patients expect to be private.
It was later clarified the departments plan to establish a data use agreement with enrollees to use their records.
Kennedy has promised that by September “we will know what has caused the autism epidemic, and we’ll be able to eliminate those exposures,” but scientists say his claims are wildly unrealistic.
Settles says she’s not prepared to put credence into the inquiry, because she views it as compromised from the start.
“I would not trust a word that comes out about autism in September, if [Kennedy] tries to say that he has figured out the cause,” she added. “The only way that he could do that is because he already knows what he’s going to say, and he’s only going to accept information that supports it. That’s not research, that’s promoting propaganda.”
