Last November, Houston advocate Morénike Giwa Onaiwu told STAT that her fourteen-year-old son had asked to erase his autism diagnosis from his medical records. “It was like a knife to my soul,” Giwa Onaiwu said. Two months later, senators in Washington debated autism as a possible consequence of vaccination. One question concerned a young person's future; the other, a scientific claim already tested for decades.
The Evidence Kennedy Would Not Affirm
On January 29 and 30, Robert F. Kennedy Jr., President Donald Trump's nominee to lead the Department of Health and Human Services (HHS), testified before the Senate Finance Committee and the Health, Education, Labor and Pensions Committee. Kennedy, founder of the vaccine-skeptical group Children's Health Defense, denied being anti-vaccine. He promised greater attention to chronic disease and public-health transparency. Supporters welcomed that agenda; critics feared his vaccine claims could undermine confidence in federal health agencies, the Associated Press reported.
On Thursday, committee chairman Bill Cassidy, a Republican physician from Louisiana, recounted treating an eighteen-year-old patient with liver failure from hepatitis B. Cassidy, who had spent years encouraging vaccination against the disease, asked Kennedy whether he would assure parents, without qualification, that the measles and hepatitis B vaccines do not cause autism.
“If the data is there, I will absolutely do that,” Kennedy replied.
Cassidy answered that the data had existed for years. Senator Bernie Sanders, an independent, pressed Kennedy again; the nominee maintained that he would review the evidence rather than make the unequivocal statement requested. Near the hearing's end, Cassidy presented a major vaccine-autism meta-analysis. Kennedy pointed to another study he wanted to discuss. Cassidy concluded without committing to support the nomination, according to CBS News' coverage of the hearing.
The evidentiary backdrop was hardly empty. A 2014 meta-analysis covering more than 1.25 million children found no relationship between vaccines and autism; a 2019 Danish study of 657,461 children found no increased autism risk following measles, mumps, and rubella vaccination. Monitoring vaccine safety remains important, but those findings do not support the alleged autism link.
The hearings revealed a conflict over what scientific questioning accomplishes. Republican Senator Markwayne Mullin asked, “We can't question science?” Democratic Senator Maggie Hassan countered that reopening well-studied claims prevented families from moving toward useful answers. Both spoke about inquiry; they disagreed over when inquiry becomes a distraction.
Outside the Capitol, autistic advocates had been making a related objection. In November, the Autistic Self Advocacy Network opposed Kennedy's nomination, rejecting the portrayal of autism as a vaccine injury and declaring, “Autistic people have always been here,” including generations previously undiagnosed or institutionalized.
The stakes extended beyond confirmation: the HHS secretary would oversee agencies involved in setting research priorities. A 2023 federal autism strategy had already identified gaps in adult services, communication access, and support for co-occurring conditions. The direction of that work remained an open concern.
Autism Research Priorities Beyond the Vaccine Debate
My generation learns to treat every difficulty as a problem to optimize. But engineering has an overlooked first step: deciding what counts as a problem.
In a June 2024 published interview, autistic young adult Joe Booth recalled a turning point in his schooling. A support worker finally wrote that “the teacher needs to be clearer” instead of “Joe needs to focus more.” The student had not changed. The institution's diagnosis of the difficulty had.
This January, researchers published survey responses from 72 autistic secondary-school students in Britain and Ireland. One teenager asked, “Do my friends only like the school me or the true me?” Such testimony shifts attention from the origin of autism toward the environments autistic students must negotiate.
That mismatch is measurable, too. In a 2023 study, 71 autistic adults ranked research on services and support infrastructure ahead of biological causes—nearly the inverse of the funding distribution across the categories examined. These respondents cannot speak for every autistic person. But whose questions receive funding is itself a decision about whose difficulties deserve solving.
Consider an AI classroom tool that scores attention through eye contact and stillness. Its accuracy might improve every year while its underlying assumption remains wrong for some students. A different design could measure comprehension, autonomy, and sensory comfort. The difference is not computational sophistication. It is whose definition of success enters the design.
Of course, lived experience cannot overturn evidence about vaccine safety, nor do all autistic people share the same needs. But lived experience can expose questions that laboratories and lawmakers have neglected. These two forms of authority should not be confused: scientific evidence tests answers; communities affected by research help determine what should be asked.
The hearings asked what science can prove. For those of us who may soon design its tools, the harder responsibility comes earlier: who was invited to decide what was worth proving?
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