What Causes Autism? And Is There an Autism Epidemic, as Robert F. Kennedy Jr. Says?
BU researcher Helen Tager-Flusberg founded the Coalition of Autism Scientists to advocate for robust research on the disorder—and counter myths and misinformation
The infinity symbol represents the diversity of people and diagnoses on the autism spectrum. “Science has made enormous progress” in improving understanding of the disorder, says BU researcher Helen Tager-Flusberg. Photo via iStock/vejaa
What Causes Autism? And Is There an Autism Epidemic, as Robert F. Kennedy Jr. Says?
BU researcher Helen Tager-Flusberg founded the Coalition of Autism Scientists to advocate for robust research on the disorder—and counter myths and misinformation
In the past month, the nation’s top health official, Robert F. Kennedy Jr., has been leading a high-profile push to inject money and momentum into autism spectrum disorder research. About 1 in 31 children and 1 in 45 adults in the US are thought to have the neurodevelopmental disorder, which can cause varying levels of challenges with communication, social interaction, and repetitive behaviors. And, yet, Kennedy’s big plans have not been warmly received.
In a series of announcements on the administration’s commitment to autism research, the US Health and Human Services (HHS) secretary said the disorder was destroying families and leaving people unable to contribute to society, and blamed environmental toxins for causing previously functional children to develop autism and fueling an epidemic in cases. Pledging to fund studies to hunt those toxins down, Kennedy resolved to have answers by September.
Many scientists and advocates accused Kennedy of spreading misinformation about the disorder and its causes and misrepresenting decades of research. (A majority of people with autism lead full lives, and multiple studies have largely tied the disorder to genetics.)
Among those expressing concern was Helen Tager-Flusberg, a Boston University College of Arts & Sciences professor emerita of psychological and brain sciences. In response to Kennedy’s April press conference announcing his initiative, she founded the Coalition of Autism Scientists, a nationwide group of around 240 leading experts, to advocate for robust research on the disorder.
“The Coalition of Autism Scientists came together to demand respect for autism research,” Tager-Flusberg said in the organization’s inaugural press release. “Instead of focusing on questions that have been asked and answered, limited and valuable research dollars must focus on what we don’t yet know about autism so that we can meet the urgent needs of autism individuals and their families.”
Despite Kennedy’s public emphasis on autism research—and the promise of $50 million to support new studies—Time has reported significant cuts in the funding available to autism researchers.
Since founding the coalition, Tager-Flusberg has become an in-demand resource for journalists and policymakers looking to learn more about autism research. Her own research has looked at brain development in infants at risk of autism, language impairment, and behavioral therapy for nonverbal children. Although retired from teaching, Tager-Flusberg remains an active researcher, leading the BU Center for Autism Research Excellence. She first began studying autism in the 1970s and says “science has made enormous progress” in improving understanding of the disorder, particularly the importance of genetics as a cause. “We also know that many people with autism are not just functioning well, but even flourishing in society, and we should welcome and celebrate that heterogeneity on the spectrum.”
The Brink spoke with Tager-Flusberg about what we know about autism’s causes (and what we don’t) and her advice for advancing research; we also asked her about some common autism myths.
Q&A
with Helen Tager-Flusberg
The Brink: What do we know about autism’s causes? And what myths about its causes have been debunked?
Tager-Flusberg: We know that genetics plays a very significant role in causing autism. For some individuals, we can see alterations in the DNA that are causing autism. We have now, I think, over 100 genes in which we know that these kinds of mutations are associated with autism. We also know that in a lot of people it’s an inherited disorder. We do know that there are some so-called environmental factors—one example is older parents, particularly older fathers—that contribute. And there, the likely story is that’s a factor interacting with the genetics.
What we do know about environmental contributions so far is that all of them are operating prior to birth—in some cases, prior to conception, in others, during the prenatal period. The evidence suggests that the second trimester is an extremely vulnerable one. Mothers who take certain medications—one good example is valproic acid, which is a medication to control seizures—increases the risk. It’s not a huge risk, but it is an increased risk. But, again, this might also circle back to the genetics, because autism itself is associated in a significant number of cases with seizures.
The Brink: Both Secretary Kennedy and, more recently, President Trump, have suggested vaccines could be a cause.
Vaccines do not cause autism. That elephant in the room was released back in the late 1990s in a discredited, now withdrawn, article. It was shoddy research. The data were made up. Many outstanding research studies have been done to debunk the idea that vaccines cause autism. We know that the onset of autism is during the prenatal period, long before babies, postnatally, are receiving vaccines.
The Brink: During one announcement, Kennedy said that people with the disorder can’t contribute to society, that it destroys families. What was your reaction to that?
He has backtracked on that. He received so much reaction. He’s now saying he was talking about 25 percent of the [autistic] population who would meet a definition of what we call profound autism, the much more severely impaired end of the autistic population. Even there, I think his characterization was so completely negative. He didn’t once focus on how important these children are to their families, how loved they are. In my opinion, and I would hope everyone’s opinion, every single person is of value to our society. We all have something to gain and to learn from loving people with a disability rather than talking about them in such a derogatory and negative way.
He also seemed to indicate that what’s motivating a lot of this increased attention [to autism] is the increased prevalence at which autism is being identified—and he seemed to attribute all the increase to profound autism. And that is entirely incorrect. Every epidemiologist who has looked at these statistics and worked with Centers for Disease Control and Prevention statistics for the last couple of decades knows that the rises that we are seeing are all in the milder cases of autism—individuals who don’t come close to having profound autism. In fact, profound autism has stayed rather steady in terms of its proportion.
The Brink: A study in JAMA Network Open found autism diagnosis rates had risen 175 percent between 2011 and 2022. HHS has said such data shows the “alarming increase of [an] autism epidemic.” What’s behind the rapid rise in diagnoses?
First of all, the diagnosis has changed, so that milder cases would now be included in autism in a way that they would not have been considered part of the spectrum earlier. We are getting far, far better at understanding autism, at screening for autism in infants, at diagnosing autism. Clinical expertise has grown enormously over the decades, and the knowledge filters out into the clinical community and into the public.
The Brink: As part of your work with the coalition, you’ve been speaking with the media about the government’s pledge to create an autism database, pulling in patient medical records from Medicare and Medicaid, to support its research.
People have used the Medicare and Medicaid datasets for quite a number of years to investigate certain questions about autism. We can use those data to understand more about who’s receiving services, how they’re being used, what amounts of intervention people need, disparities in service utilization. You’re looking at billing data, how the government was billed for diagnostic evaluations and intervention services. But it leaves out lots and lots of other data. For example, there are many kids who don’t get diagnosed until they get into the school system and they’re receiving their services through the school system. Those kids do not appear on the Medicaid and Medicare billing rolls. [The government] said, we’ll use these data to address questions about time trends in diagnosis and service utilization and so forth, all of which are legitimate and appropriate uses of those data. But Kennedy also said they would be using this new platform to address questions about what causes autism. Medicare and Medicaid datasets include no relevant information to address those questions.
The Brink: Let’s talk a little bit about some of the work that you and your colleagues have been able to do over the previous decades thanks to funding from the federal government. What are some of the advances you’ve been able to make in our understanding of autism?
In my lab, we’ve been working on two primary areas of research for the last two decades. We started to investigate what we call the minimally verbal children. These are the kids who, despite early intervention, don’t acquire language abilities; that’s my area of expertise: language. We’ve done a great deal of work to try and understand what kinds of communication capacities these individuals have, why these children and adolescents do not acquire spoken language, and how we might assess them better. That’s been a major contribution.
In collaboration with colleagues at Boston Children’s Hospital, we’ve also been studying infants long before they develop autism. We want to see, what’s their developmental trajectory, when does autism emerge in terms of the behavioral symptoms, and, most importantly, can we predict which of the babies, by the time they’re two or three, will be diagnosed with autism?
The Brink: Given your standing in the field, has HHS or National Institutes of Health (NIH) been in touch to ask for your advice or how you might contribute?
I have been in touch with so many people over the last several weeks—I was recently at the International Society for Autism Research with 2,400 colleagues—and not a single person I know, or anyone else knows, has been contacted by HHS or NIH. I’m a public member of the Interagency Autism Coordinating Committee, which is a federal committee that was mandated by Congress in the Autism CARES Act. Since the new administration took over, we have heard nothing from the chair of the committee or from the executive director. I tried reaching out to them and they have not responded.
The Brink: What would be your message for HHS and the federal government on the best way to advance autism research and improve support for people with autism and their families?
The National Institutes of Health has always followed a certain process when they want to ramp up or change direction: convene a group of scientists who work in that area, and perhaps include scientists from adjacent areas. I was privileged enough to be at the very first meeting that the NIH convened back in 1995 to talk about autism research. That did lead to a very significant increase and a focus on identifying causes of autism, and that has never stopped.
This interview was edited for length and clarity.
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