By Lisa Jarvis / Bloomberg Opinion
Health and Human Services Secretary Robert F. Kennedy Jr.’s vow to uncover the cause of autism by September is ludicrous. There are no fast and easy answers in science, especially when it comes to complex neurodevelopmental conditions.
Moreover, Kennedy’s history of bending science to match his pet theories suggests any “answers” he finds may do more harm than good. And the biggest concern is that this initiative is a ruse to push his anti-vaccine agenda.
Normally, I’d embrace fresh attention to a condition affecting so many children and their families. But Kennedy is walking into the project, which he claims will involve hundreds of researchers around the world, with a stubborn misunderstanding of the disorder and how to address it.
That starts with his alarmist framing of autism as a rapidly growing epidemic that is uniquely threatening to American children; a shift he believes is driven by some change in their environment.
It’s true, as Kennedy often says, that only 1 or 2 out of every 10,000 children in the U.S. were diagnosed with autism in the 1980s, whereas today, that number is around 1 in 36. (Kennedy recently said that forthcoming data from the Centers for Disease Control and Prevention will peg that rate at 1 in 31.) And taken at face value, those statistics do look alarming.
But our concept of autism has changed dramatically since the 1980s. The first major shift came in 1987, when the diagnostic criteria were significantly broadened. Children no longer needed to show symptoms before early toddlerhood or display all of more than two dozen characteristics to be diagnosed with the disorder. Subsequent updates to those criteria, one in 1994 and the other in 2013, further expanded what fell under the autism umbrella.
After each change, autism suddenly looked a lot more common, explains Joseph Buxbaum, director of the Seaver Autism Center for Research and Treatment at Mount Sinai. “When you look carefully to the best of our ability to determine it, there really isn’t such a huge increase.”
The medical community has also made a particular effort to correct egregious disparities in diagnoses. Black and Latino children, for example, are habitually diagnosed much later than their white peers, and there is an increasing recognition that girls with autism have flown under the radar.
And finally, there’s been a push to get kids diagnosed so they can receive the support they deserve. In some cases, that push comes from parents, who know that a diagnosis can unlock new resources for their child, such as early intervention services or school-based support like a Section 504 plan or an IEP (individualized education program).
In other words, some new, external factor isn’t suddenly causing lots more kids to have autism, as Kennedy frequently claims. Those kids were always there; we’re now just putting far more effort into identifying and supporting them.
Then there’s Kennedy’s absurd notion that researchers could come up with the cause of autism in the next five months. That’s not how science works. Neurodevelopmental disorders are incredibly complex; autism is especially so given the vast variation in its severity and symptoms.
Underlying Kennedy’s commentary about autism is the implication that scientists aren’t already hard at work at this question of what causes it. Kennedy recently claimed no one has been directly trying to understand the cause, and that this work “should have been done 20 years ago.”
The reality is that scientists have spent decades trying to understand what might put someone at greater risk for autism. They’ve uncovered hundreds of genes connected to autism, as well as the complex interplay between that genetic risk and environmental influences. Just last week, for example, separate papers examined the elevated risk presented by diabetes during pregnancy and explored how the gut microbiome could affect behavioral symptoms in children with autism.They haven’t come up with a definitive answer, though, because of the complexity of the disorder, says Alice Kuo, an autism researcher and chief of medicine-pediatrics at UCLA. “It’s not going to be a single culprit. There’s no smoking gun.”
But the larger worry is that the conclusion at the end of Kennedy’s brief search for the cause of autism is foregone; that this effort will be used to legitimize his thoroughly debunked claim that vaccines cause autism. In his few short months as HHS Secretary, he has already provided ample evidence to suggest that will happen.
Despite promising to not relitigate vaccine safety during his confirmation hearings, Kennedy has opened back up the books on routine childhood shots. Peter Marks, who oversaw vaccine approvals at the Food and Drug Administration, said in his resignation from the agency that Kennedy’s reexamination of CDC’s safety data was driven by a desire to confirm “his misinformation and lies.”
That was clear when news dropped that Kennedy had enlisted notorious anti-vaxxer David Geier, who in 2012 was found liable by the Maryland State Board of Physicians for practicing medicine without a license amid reports he was prescribing dangerous and unproven therapies to children with autism, to lead that vaccine study.
That’s a chilling development. And it could lead to a terrifying outcome: a further erosion of faith in routine childhood vaccination that is already fueling outbreaks of the measles and whooping cough, both of which can be deadly. If come September, Kennedy points to vaccines as a source of autism, it would harm every child whose parents refuse to protect them from preventable diseases, and harm people with autism who deserve a better understanding of their condition.
Lisa Jarvis is a Bloomberg Opinion columnist covering biotech, health care and the pharmaceutical industry.
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