As the clock ticks down on Robert F. Kennedy’s self-imposed deadline to identify and reveal a supposed cause of autism, the U.S. Health and Human Services Department secretary has stoked fresh fears within the disability community.
In April, Kennedy promised that he would spearhead a “massive testing and research effort” that would establish autism’s cause “by September.” The study has yet to materialize, but in recent days the secretary has made statements that one researcher called “another round of ‘autism-cause roulette.’”
The churn “is creating public health whiplash” that may “derail the search for the actual truth,” Jessica Steier, CEO of Unbiased Science — an organization of medical and public health specialists — recently told a group of journalists.
Advertisement – Continue Reading Below
At a heated Sept. 4 Senate hearing, Kennedy repeated misinformation about vaccines, which he has long blamed for what he calls an “epidemic” of autism, despite dozens of studies to the contrary.
The following day, the Wall Street Journal reported he was planning to release a report blaming pregnant women’s use of acetaminophen and low maternal levels of a form of the vitamin folic acid as autism’s root cause — a link mainstream scientists were quick to call unproven.
The effort to blame acetaminophen sparked an angry backlash among disability advocates, who noted a painful history of attempting to attribute autism to poor parenting, including the supposed indifference of emotionally frosty “refrigerator mothers.”
Then, on Sept. 9, the department released “Make Our Children Healthy Again,” a 20-page report that said Kennedy has told the National Institutes of Health to move forward with compiling a massive database of medical and pharmacy records, insurance claims and even information generated by apps. The database will be used to research numerous conditions, including autism.
President Donald Trump and Kennedy have given fresh fuel to longstanding fears that disease registries might be used to identify people with autism for forced sterilization, institutionalization and even death. Such a list was used by Nazi officials to identify children to be sent to “euthanasia clinics.”
Until the 1970s, similar lists were used to identify Americans to be subjected to forced sterilization and institutionalization. As a result, autism advocacy groups are often split on whether to recommend families participate in research that collects genetic or medical information.
In a July executive order urging civil commitment of homeless people and individuals with mental illnesses, Trump ordered federal housing and health officials to collect data on people who should be targeted. On Sunday, Fox News host Brian Kilmeade apologized for declaring on air that people who are mentally ill and unhoused should be subject to “involuntary lethal injections.”
An overwhelming majority of scientists agree that autism is a naturally occurring neurotype and not a mental illness. But because their needs frequently go unmet, people with autism often struggle with anxiety, depression and other conditions.
Even as Trump has declared autism “a tremendous horror show” and Kennedy claimed it “destroys families,” the administration has slashed tens of millions of dollars in funding for efforts to improve the lives of people with autism, Medicaid and other programs that people with disabilities rely on.
In an essay published in The New York Times last month, Steier broke down the “playbook” Kennedy and other officials have used to counter the avalanche of evidence disproving a link between vaccines and autism. Since 1998, 70 studies have looked for such a connection.
Of 26 that purported to establish a link, 18 were written by David and Mark Geier, a Maryland father-and-son team who were cited by medical authorities for performing dangerous experiments on children with autism and whose work was routinely rejected by scholarly journals. Kennedy has assigned David Geier — who was disciplined in 2011 for practicing medicine without a license — an unspecified role in HHS’ new search for a cause.
The other eight studies that found a link were retracted or discredited.
Kennedy has received at least $10 million in referral fees and profits from law firms suing vaccine manufacturers.
Research has found no link between autism and acetaminophen, the active ingredient in Tylenol, Steier told reporters last week. One recent Swedish study of 2.5 million children included 186,000 who had been exposed to the painkiller. The babies were 5% to 7% more likely than the other children studied to have ADHD or autism, but an analysis involving their neurotypical siblings disproved any causal relationship, she said.
But five days after the Senate hearing, and about two weeks after Trump publicly pressed Kennedy about his deadline for identifying autism’s cause, The Atlantic published a story quoting William Parker, an immunologist whose efforts to publish papers supposedly establishing a link have been routinely rebuffed by mainline journals. Parker said he had spoken to Kennedy five times in recent weeks and met on Zoom with National Institutes of Health Director Jay Bhattacharya.
Parker, the magazine reported, was elated. “Nothing was happening and — boom!” he said. “It’s beautiful.”
Even as Kennedy perseveres, advocates are critical of his stance toward people with autism, says Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. She is among those who were disappointed to see the secretary redouble his efforts to create a “disease registry” mixing public and private data that medical privacy laws have kept separate.
When the plan for the new, sweeping federal dataset was first announced in April, Bhattacharya tried to allay fears by promising it would adhere to “state-of-the-art” privacy protections, but did not specify what those are. Privacy experts at the Brookings Institution and elsewhere say there is no legal roadmap to doing what Kennedy proposes.
Unlike many other agencies, the NIH is not bound by the Health Insurance Portability and Accountability Act, or HIPAA, the main law that restricts who can access private medical information. Instead, NIH must adhere to the Privacy Act of 1974, which puts strict limits on the collection of personally identifiable information.
Uproar notwithstanding, Kennedy’s new report did not clarify how individual medical records would be protected. Repeated requests for comment from HHS went unanswered.
According to a report from Brookings, people typically have no idea they will have little or no control over whether their health insurer or the maker of a wearable fitness tracker will sell or otherwise mine their data for commercial purposes.
“Under the Trump administration’s plan, user health data would flow directly into an unregulated ecosystem of third-party apps where sensitive health details could be mined for behavioral advertising, packaged into risk scores or even cross-referenced with phone-collected location data,” the report warns. “In effect, the initiative centralizes some of the nation’s most sensitive records, while simultaneously lowering or ignoring guardrails that have long protected them.”
Gross says she thinks it is unlikely NIH is compiling a registry that identifies people with autism. But instead of allaying concerns, Kennedy has pushed people with disabilities out of the conversation and eliminated research into their priorities.
The federal office that brings together people with autism, scholars and representatives of numerous cabinet departments to set research priorities, the Interagency Autism Coordinating Committee, has not been active since Kennedy’s appointment, Gross says. HHS did not respond to questions about the committee’s status.
Earlier this year, her organization lost a grant to collaborate on addressing longstanding and widely acknowledged gender bias and ableism in diagnosing people with autism by using a questionnaire asking about their experiences, rather than others’ subjective impressions.
“It was a really promising project, and it was pretty far along,” says Gross.
During the first four months of the year, at least $31 million, or 26%, was cut from NIH’s autism research budget. HHS has said many of the reductions were made to adhere to executive orders on “gender ideology.”
“We haven’t even gotten to what is the utility of doing this,” Gross says, regarding ongoing efforts to resuscitate disproven theories. “How is this going to improve the lives of autistic people?”
This story was produced by The 74, a non-profit, independent news organization focused on education in America.
