Alex Ellerbeck, an Opinion health and science editor, hosted an online conversation with four autism experts to discuss the Trump administration’s news conference Monday on autism.
Alex Ellerbeck: On Monday, President Trump suggested that vaccines were contributing to the increase in autism and told parents to space out their children’s vaccine schedule. Mr. Trump and top health officials, including Health Secretary Robert F. Kennedy Jr., linked Tylenol to autism. Trump said pregnant women should only take it if they couldn’t “tough it out.” What was your reaction to this announcement?
Alison Singer: It took me straight back to when moms were blamed for autism. If you can’t take the pain or deal with fever, if you can’t tough it out, then you are to blame if your child has autism. That was shocking. Simply shocking.
Helen Tager-Flusberg: I was expecting some of what was presented, but I have to say I was shocked and appalled to hear the extreme statements without evidence in support of what any of the presenters said. In some respects this was the most unhinged discussion of autism that I have ever listened to. It was clear that none of the presenters knew much about autism — other than the mothers’ lived experience — and nothing about the existing science. This may be the most difficult day in my career.
Eric Garcia: Same here. The other comment that hit me was Dr. Marty Makary, the Food and Drug Administration commissioner, saying: “If you’ve seen a kid with autism, with severe autism, it’s hard to watch. Kids get frustrated, they get angry, they can be crying because they want to speak and they can’t speak. It’s hard to watch.” Nobody disputes that high-support-needs autistic people have significant health challenges. But him saying “we can end the suffering” and “it may be entirely preventable” will offer tons of folks false hope.
Ellerbeck: Mr. Trump called the increase in autism a “horrible, horrible crisis.” He claimed that autism had risen 400 percent, that people in Amish communities don’t get autism. Brian, you’ve studied the epidemiology of autism. What do you make of this?
Brian K. Lee: There has certainly been a rise in autism. The factors contributing to that are debatable, but it is undebatable that a large portion of this is due to increased awareness and changing diagnostic criteria. The claim that the Amish don’t get autism made me raise my eyebrow. Traditionally, the pathway to autism diagnosis happens through medical care or through the school system, and these are two things that may be different for Amish children growing up. So if the Amish do indeed have a lower prevalence of autism, it’s likely related to the fact they have less opportunity to be diagnosed.
Garcia: If anything, the fact we now have increased diagnoses is a reason to celebrate. For the longest time, we overlooked autistic people of color and girls. Having data is good. It allows us to ask: “What do we do with these people? How can we serve them?” Instead, we’re seeing their existence as a crisis.
Tager-Flusberg: I would also take issue with calling the increase a horrible crisis. While the president and Mr. Kennedy spoke about profound autism, in fact we know that most of the increase in numbers is in individuals at the milder, nonprofound end of the spectrum. Here is where changes in diagnostic criteria have made an impact.
Singer: Mr. Kennedy and the president talk about profound autism symptoms, but then cite the “one in 31” number as the prevalence of autism, but that’s the prevalence for the full autism spectrum. The prevalence of profound autism is about one in 216.
Mr. Kennedy repeated his claim that there are no older adults with profound autism. My older brother, age 61, has profound autism. He lives in a group home with other men with profound autism. The reason Mr. Kennedy never saw anyone with profound autism when he was growing up is because back then people with autism were sent to institutions. They had no rights to go to school. Mr. Kennedy, if you are reading this, please consider this an invitation to come and meet my brother.
Garcia: To Alison’s point, many of the people that we now consider autistic previously had a diagnosis of intellectual disability. David Mandell, a professor of psychiatry at Penn, did a study many years back showing that 10 percent of patients institutionalized in a state hospital had undiagnosed autism. Many of them lived in squalid conditions and died alone. It took years of parents fighting to take them out of the shadows.
Ellerbeck: Is there a real rise in cases beyond changes in diagnosis? If so, what might be driving that if it’s not Tylenol or vaccines?
Lee: I personally believe that at least some portion of the increase in autism prevalence is due to an increase in autism risk factors. Take, for example, air pollution, which in my opinion has been credibly linked to autism in a number of studies. Or older parental age, which has also been credibly linked to autism in a number of studies. If either of these phenomena has increased over time, this would certainly contribute to an increase in autism over time. However, I will point out that very interesting studies coming out of Sweden have found no difference in autism symptoms over the years, even while autism diagnoses have clearly risen. This supports the very strong role of changing diagnostic criteria and increased awareness.
Ellerbeck: Researchers have been looking at the link between Tylenol and autism for a number of years, and there are some studies that find an association. Brian, you helped conduct one of the biggest studies looking at autism and Tylenol in Swedish children. Is there a valid concern here?
Lee: Let me put it this way. There are a number of studies, including our 2024 study in JAMA, that showed an apparent statistical association between acetaminophen use during pregnancy and children’s risk of autism, A.D.H.D. and intellectual disability. But association is not causation. We had reason to believe that a big elephant in the room was being ignored in many studies: genetics. Autism and other neurodevelopmental conditions are highly heritable. Studies ignoring this genetic component would conclude this statistical association equal causation. Studies like our Swedish study and others, including a Japanese study that just came out this month, that have gone further and accounted for genetics by using sibling controls found that this statistical association disappeared. In other words, it’s not causation.
Ellerbeck: Helen or Alison, is there an argument for erring on the side of caution and not taking Tylenol while pregnant?
Tager-Flusberg: There is an argument to limit the use of Tylenol to a brief period of infection or fever, as we would with any medication, but Trump really went far beyond this by admonishing mothers to “tough it out.” How could a mother not feel guilty, anxious and devastated when they think back to the times they did take Tylenol during their pregnancies?
Singer: The new recommendations are not based on the science. The largest study in the systematic review that the administration cited, found no association between prenatal Tylenol use and autism. The smaller studies that did indicate an association were of different sizes, did different analyses, used different doses and even measured autism in different ways. The key question is: Why are these pregnant women taking Tylenol in the first place? We know that fever during pregnancy is a risk factor for autism. So if they were taking Tylenol, was it the fever that caused the autism or the Tylenol? The smaller studies did not control sufficiently for this.
Ellerbeck: Brian, one review published in the journal BMC Environmental Health has been cited a number of times by the administration. It claimed to find a consistent association between acetaminophen in pregnancy and neurodevelopmental disorders. What do you make of that review?
Lee: One of the difficulties with reviews is that beauty is in the eye of the beholder. This methodology places more emphasis on “better” studies, and downweights or disregards “worse” studies. If you have different scientists in a room, they may disagree on what studies are better versus worse. But while there is certainly room for valid disagreement among scientists, it’s another thing when the literature is selectively interpreted. It’s noteworthy that Dr. Andrea Baccarelli, an author of this review paper, was an expert witness in a class-action lawsuit brought against acetaminophen manufacturers. His testimony was excluded by the judge presiding in the case for being scientifically unsound.
Ellerbeck: Trump linked vaccines to autism: “They pump so much stuff in those beautiful babies, it’s a disgrace.” He recounted the story of a woman who worked in Trump Tower, saying that she “lost” her son to autism after he took a vaccine. What will be the impact of Trump’s statements?
Garcia: That line made me genuinely sad because, well, her boy still exists. It reminds me of what Jim Sinclair, the neurodiversity activist, said, “When parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.’” You still have your child. Your child still is alive and can live a good life. Yes, children can have significant challenges. But your kid is here. He has challenges. So what are you going to do about it? Will you mourn the kid you thought you had? Or will you push like hell to make the world better for your child?
Tager-Flusberg: We thought we had put this idea that vaccines cause autism behind us. Now it is rearing its head again. When the president of the United States makes claims like this we know that many parents will be listening, and the impact may be truly devastating.
Ellerbeck: Let’s talk about leucovorin. This is the drug that the administration says it will make available for treatment for autism Explain to me what leucovorin is and why some scientists think it might be a possible treatment.
Tager-Flusberg: A few small-scale studies have investigated whether leucovorin may be an effective treatment for some symptoms associated with autism. The idea behind its use is that some children show signs of folate deficiency, and leucovorin may be able to address this deficiency. The research so far isn’t nearly clear enough for the F.D.A. to rush ahead with approval for treating autism with leucovorin. We need large-scale rigorous clinical trials to identify for which children, at which dosages, for which symptoms leucovorin might be effective.
Ellerbeck: To play devil’s advocate, if this is a relatively safe drug, why shouldn’t people who want it have access to it? Is there a risk of being overly cautious?
Lee: I think this falls into the category of “just because you can, doesn’t mean you should.” Folks already have easy access to loads of nutritional supplements, but that doesn’t necessarily mean one should go out there and start popping pills. Taking large quantities of anything will almost certainly lead to side effects. I find it somewhat ironic that this news conference seemed to promote incredible levels of caution when it came to acetaminophen and vaccines, but then threw caution to the wind when it came to this understudied nutritional supplement.
Ellerbeck: Eric, what is it like as a person with autism to listen to President Trump or Mr. Kennedy speak about autism as a crisis or a horrible disease?
Garcia: It’s horrible. It’s devastating. And talking to other autistic people, they feel the same. Look, I’m going to be fine. I have a job and a good life and family that loves me, and friends who know we have to go to a sensory-friendly restaurant or bar when we go out. But what about autistic people who don’t have those resources? What about autistic kids whose parents will buy this garbage? They are going to be subjected to horrible treatment and stigma. It’s also terrible because we are just getting to the point where we listen to autistic voices and value them. I don’t want to say we’re going back. We’re going somewhere worse.
Ellerbeck: Kennedy’s words are resonating with some people deeply affected by autism, including some parents of kids with autism who spoke at the news conference. Why is that?
Singer: Many parents of profoundly autistic children finally feel like their voices are being heard in this administration. For a decade our children were left behind as the research focus shifted to focus on the priorities of very high-functioning autistic people, which are different than the priorities in the profound community. Many parents of children with profound autism want research looking at causes and want new interventions to stop seizures, reduce self-injurious behaviors, prevent catatonia, improve language, focus on gene-editing techniques to restore function, and the list goes on. So there was a lot of hope when Kennedy and Trump said they would refocus research on profound autism. But this is not the way to do it. We agree we need gold standard science, but that’s not what we got.
Garcia: I have a lot of sympathy for higher-support-needs autistic people and their families. I think the system has failed them. Medicaid remains criminally underfunded. Home services feel impossible to receive or they take years to. I have said repeatedly that families of autistic people with high support needs should have an autism triage team of autistic people and people who have gone through this to support them and help them navigate it. Because otherwise, they can be vulnerable to charlatans like Kennedy.
Ellerbeck: Alison, you’ve used the language of “profound autism.” Eric, you’ve talked about people with “higher support needs.” What is the distinction being made with this terminology, and why do each of you use the language that you do?
Garcia: I actually agree with Alison wholeheartedly that we need to focus as much as we can on giving services most to people who need it. But I fear that a term like “profound’ is similar to that of disease or an epidemic rather than focusing on what they need. When I say “high support needs” or “autistic person with intellectual disabilities,” it’s because I want to focus on what we need to serve them.
Singer: We need to return to the days when we recognized different subtypes of autism, including classic autism and Asperger’s syndrome, a milder form. The term autism spectrum disorder is so broadly applied now that it is practically meaningless. When I say my daughter has autism or autism spectrum disorder, I am not conveying any useful information. We need useful subtype terms, like profound autism, to distinguish the very different types and levels of needs so that we can build out the appropriate supports and services. My profoundly autistic daughter, for example, needs 24/7 supervision to keep her safe, whereas a person with high-functioning autism might need special supports in the workplace in order to maintain a job. Everyone’s needs should be met, but we need to recognize that the needs are vastly different.
Tager-Flusberg: I just want to jump in here to say nothing Trump or his colleagues spoke about today seemed relevant to any segment of the autism community. The administration is just raising false hopes that they have the answers that the scientific community was hiding for the past three decades.
Garcia: I wholly agree with Helen. I worry especially that autistic people with high-support needs will see this as a panacea and give them false hope for their kids. Trump and Kennedy are selling false hope to people who feel the system has failed them.
Lee: I was curious if folks had seen the Autism Data Science Initiative grants that were funded. I’m a part of several of these efforts myself but am curious to see what folks have to say.
Ellerbeck: This refers to the 13 research projects into autism that the Trump administration announced on Monday that it was funding as part of its broader autism initiative.
Tager-Flusberg: I knew about a few of these but hadn’t seen the full list. It is very impressive! I’m delighted to see how many of these projects are including both genetic and other factors, in what look like very sophisticated approaches. This is exactly what we have been calling for. What a contrast to what we heard today!
Lee: Seeing the full grant list gave me some small measure of hope and gratitude that possibly some good science can come of this renewed focus on autism. Perhaps I was being overly pessimistic, but I half expected to see the list of funded studies including 10 proposals about why vaccines cause autism. That it didn’t, and moreover that the list of funded proposals included talented scientists doing cutting-edge work, left me happy that this administration did not put their thumb on the scale when it came to grant funding decisions.
Ellerbeck: Imagine it’s 30 years in the future. What do you think a better world for autism would look like? If we shouldn’t be spending our time relitigating whether vaccines cause autism, what should we be focused on?
Singer: Today’s announcement distracts from the urgent scientific work needed to understand the true causes of autism and to develop better supports and interventions for autistic people and their families. Autism doesn’t have a single cause. It is the result of a complex mix of genetics and environmental factors. We know that genetic factors play the biggest role; hundreds of genes have been linked to autism, and inherited or spontaneous changes in these genes can alter brain development. Environmental factors also matter, especially during pregnancy, such as advanced parental age at conception, prematurity or low birth weight, and exposures that affect brain development, like fever or illness during pregnancy. Once we understand the causes, we may be able to develop treatments that are specific to the underlying biology of autism. Personalized medicine is the goal.
Garcia: I genuinely don’t know how to answer because we don’t know what a world that accepts autistic people looks like. I guess what I would hope is that an ideal world is one that doesn’t see an autism diagnosis as an apocalyptic one. Rather, when the diagnosis comes down, the next question is: “What can we do for them? How can we serve them? What does a good life look like for them?” That isn’t very specific. But it’s open-ended enough to fit as many people across the autism spectrum as possible, I feel.
Tager-Flusberg: I hope the future will bring a better quality of life — mental, physical — for everyone with autism; that people with profound autism can emerge from the shadows in the same way that Eric has. This will take more than just research, but that is a starting place.
Helen Tager-Flusberg is a psychologist at Boston University and the founder of the Coalition of Autism Scientists. Alison Singer is the president of the Autism Science Foundation and mother of a child with autism. Brian K. Lee is an epidemiologist at Drexel University. Eric Garcia is the Washington bureau chief for The Independent and the author of “We’re Not Broken: Changing the Autism Conversation.”
Source photographs by Andrew Harnik and James Keyser via Getty Images.
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