How one reporter cuts through the noise on autism, amid the deluge of misinformation

In virtually any other circumstances, the interest of both the U.S. president and the secretary of Health and Human Services in autism spectrum disorder would be a welcome development. Autism spectrum disorder is a neurodevelopmental condition that affects millions of Americans. It deserves more attention, research and funding, particularly in areas that directly affect autistic people’s health and quality of life. 

But these are not normal circumstances, and this complicated, highly heterogeneous condition has caught the attention of administrative leaders who have a tendency to take fact and nuance and hammer them down into truncheons of misinformation. 

Take, for example, the Trump administration’s Sept. 22 announcement regarding acetaminophen and autism, which was to the best of my knowledge the first White House press conference dedicated specifically to autism. This is how it started:

“The meteoric rise in autism is among the most alarming public health developments in history,” said President Donald Trump. “There's never been anything like this … and by the way, I think I can say that there are certain groups of people that don't take vaccines and don't take any pills that have no autism. That have no autism! Does that tell you something? That's currently — is that a correct statement, by the way?”

Robert F. Kennedy Jr: “Uh, there are some studies that suggest that, you know, with the Amish, for example …”

Trump: “The Amish. Virtually. I had no — I heard none. See, Bobby wants to be very careful with what he says, and he should, but I'm not so careful with what I say.”

By the time it was done, administration officials had highlighted research linking autism to acetaminophen use in pregnancy while omitting vital caveats and context, made inaccurate statements about the childhood vaccine schedule, and criticized the federal government’s own research scientists.

As medical advice, Trump’s statements in the Roosevelt Room were confusing and potentially dangerous. “Toughing out” a high fever in pregnancy, to name one example, carries serious risks of its own. 

Kennedy’s remarks on autism since taking office are potentially more damaging. His sentences are clearer; he tosses out terms like “glutathione production” with apparent confidence. But he is polluting the record with statements that are misleading, hyperbolic or often flat-out false, often while denigrating the very people practicing the “gold standard science” he claims to champion and misrepresenting autistic people’s lives.

“We've been trying to get an executive administration to shine a bright spotlight on the issues in profound autism for years,” said Alison Singer, co-founder and president of the Autism Science Foundation, when I called her a few hours before Trump’s Sept. 22 announcement. “We haven't had the press conference yet today. But the concern is that we're not going to hear gold standard science today. We might not even hear science.” 

Autism touches on virtually every significant aspect of what it means to be a person: how we engage with stimuli and one another, how our senses interpret the world.

No biomarkers neatly delineate who’s autistic and who isn't. The diagnostic definition rearranges every few years. Autistic people’s traits, preferences, abilities and needs vary so widely that it’s hard to find a single declarative statement that is true for all of them. No one knows exactly what causes it, or why it appears as it does in any given individual. It’s fluid. It’s nuanced. It’s complicated.

By the time it was done, administration officials had highlighted research linking autism to acetaminophen use in pregnancy while omitting vital caveats and context, made inaccurate statements about the childhood vaccine schedule, and criticized the federal government’s own research scientists.

For all of these reasons, I choose the words I quote from both Trump and Kennedy carefully. Restating inaccurate comments in a story gives oxygen to falsehoods and helps them live a little longer, even when swiftly followed with facts and context. It takes up reader attention that could be invested in the truth. 

Science journalism is an excuse to spend the day writing about people at their best: collaborating, figuring things out, getting creative, addressing hard problems, evolving their thinking when they learn something new or see a new perspective.

The second Trump administration feels like a gravitational force distorting this beat into the same grim story, every day: what’s cut, who’s fired, what’s suffering as a result. That’s important. We have to cover it. But for as long as I have a job in journalism, I want to keep drawing readers’ attention back to the truth, which is usually more interesting than . . . whatever that digression about the Amish was. With each head-spinning new development, I try to frame my stories by thinking about the most useful thing a reader might take away from it. 

Prior to the Tylenol announcement, I’d been working on a story supported by the Center about the reasons autism rates have risen over the decades. Despite Kennedy’s assertions otherwise, the increase in diagnoses has come about largely because we define autistic traits more broadly, and look for it more actively. 

I’d spent the previous six weeks building relationships with sources and following their leads and suggestions on experienced, insightful experts on different issues in autism. I nerded out on reading and made annotated study guides for each book and research paper. When the Tylenol announcement came, I didn’t need to spend time on deadline introducing myself to sources or brushing up on basics. We were able to publish two days after the press conference, and the story fortunately found a much wider audience than the coverage of the inaccuracy-filled press conference. 

If autism was going to be in the news, at least readers could learn more about what it actually is, and why it matters to identify and support people’s differences early. We could give people a platform to talk about their own lives, instead of allowing others to say untruthful things about them.

“From the beginning, they have talked about our community like a plague that needed to be wiped out, saying that autism ‘destroyed’ children and their families, and making the false and insulting claim that autistic people could not write poetry, play baseball, go to work/pay taxes, or fall in love,” Colin Killick, executive director of the Autistic Self Advocacy Network, told me in an email. “They have attempted to panic the public with the notion of an autism epidemic as a threat to the nation, when no such epidemic actually exists — rather, more people are being diagnosed with autism today because we have broader diagnostic criteria and do a better job detecting it.”

The truth comes in shades of gray, and that can be uncomfortable for all of us as we calcify into a society that thinks in black and white. There is room for nuance and complexity. Autistic traits can be superpowers, in ways that deserve recognition and celebration. They can also be profoundly disabling, in ways that deserve support. The researchers who found an association between acetaminophen and autism are experienced, conscientious scientists who delivered their conclusions with more nuance and sensitivity than the administration that cited their work. Respected research teams have recently received federal grants to investigate potential links between autism and environmental exposures. That doesn’t mean the deep body of evidence indicating that there’s a genetic role in autism is a “canard,” as Kennedy has said. 

Autism is complicated; autism is fascinating. Answering its many outstanding questions could help us better understand how all brains work, how all children learn and what meaningful support can look like. For as long as there are people doing that work, that’s who I want to highlight.