RFK JR dated view of Autism

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President Donald Trump said he has tasked Health and Human Services Secretary Robert F. Kennedy Jr. with determining how autism is “artificially induced” in children.

The MAGA president made the head-scratching claim during a Make America Healthy Again (MAHA) Commission press conference on Thursday at the White House, moments after the release of a commission assessment “exposing root causes of childhood chronic disease crisis.”

Trump: Now it's 1 in 31 for autism. I think that's just a terrible thing. It has to be something on the outside. It has to be artificially induced, has to be pic.twitter.com/peYxEJLYvh
— FactPost (@factpostnews) May 22, 2025

“When you hear 10,000, it was 1 in 10,000, and now it’s 1 in 31 for autism, I think that’s just a terrible thing,” said Trump to a room full of reporters. He added, “It has to be something on the outside, has to be artificially induced, has to be.”

Medical experts have pushed back on Trump and RFK Jr.’s characterization of such figures as an “epidemic,” with many saying the change can be largely chalked up to better autism screenings.

Just one month after setting a deadline to find the cause of autism, Health and Human Services Secretary Robert F. Kennedy Jr. is already pushing back the timetable.

In April, Kennedy announced at President Donald Trump’s Cabinet meeting that the HHS launched a “massive testing and research effort” that would lead to finding “what has caused the autism epidemic and we’ll be able to eliminate those exposures” by September.

Now, the HHS secretary predicted his department will need another six months to achieve this goal.

While researchers will be able to ascertain “some” information by the original deadline, Kennedy said it will take more time to obtain the “most solid” information, Kennedy told CNN’s Kaitlan Collins Thursday. The additional six months would push the timeline to March 2026.

“We’re going to replicate some of the studies that have already been done that look like sound studies. We’ll know a lot from those and then we’ll know a lot more afterward,” he continued.

“Those additional months are necessary to be more certain in the findings, Kennedy said. “We’re going to be definitive and the more definitive you are, the more it drives public policy,” he added.

Expressing concern can sometimes be a delicate endeavor. One can intend to be empathetic, but the target of concern hears only condescension and pity. So it is with Health Secretary Robert F. Kennedy Jr., who recently talked about how much autistic children suffer. These poor kids, he said at an April 16 press conference, would never “pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date. Many of them will never use the toilet unassisted.” Listening to Kennedy, some parents of autistic children felt seen. “I found myself nodding along as Mr. Kennedy spoke about the grim realities of profound autism,” Emily May, whose daughter has limited verbal ability, wrote in The New York Times. But our guest this week, Eric Garcia, who attended the press conference, saw it differently. Such an intimate and detailed accounting of their failures, Garcia says, “almost bordered on pornography to me.”

The Autistic Self Advocacy Network condemns the release of the Make America Healthy Again (MAHA) Commission’s most recent report. The Commission was created to try and lower the rate of “autism and other chronic health conditions” in the United States. Lowering the rate of autism is not possible given that autism is a hereditary developmental disability.

Much of what the report talks about is not actually a problem. It presumes that a condition getting diagnosed more often, or more people getting care for it, must mean that the condition is getting more common or getting worse. The truth is that in many cases there have been improvements to the accessibility of health care, as well as improved criteria for diagnosis. For example, the increased prevalence of autism diagnosis is thanks to better access to screening and improved understanding of autism, especially for people of color, women, and LGBTQI+ autistics. Doing a better job of identifying a condition and helping more people get supports for it is a good thing, not proof of an “epidemic.” ASAN remains committed to debunking disinformation and scare tactics from the MAHA Commission.

The report continues to peddle disinformation and spread fear about autistic and other disabled people. It lumps together the wildly different conditions of childhood cancer, asthma, autoimmune disease, autism, allergies, and children existing in higher-weight bodies all in the same bucket of “increasing chronic conditions” and talks about them as a collective problem. present normal parts of disabled people existing, like necessary medications and special education programs, as threats to the American public. Rather than engaging the autistic community or other disabled communities about what our true health needs are and how to address them, this report focuses on directing fear and disgust towards our community. It treats us as a sign of a societal problem to be eliminated, instead of human beings with health needs worth addressing. It also intentionally avoids taking responsibility for problems the administration itself is causing to our community through efforts such as threatening the Department of Education and the Administration of Community Living.

Vaccines
The MAHA Commission purports to invest in children’s immune health, ]but this administration’s every action runs counter to that goal, whether through the appointment of quack David Geier, the public communications blackout from the Centers for Disease Control, the limitation on COVID vaccines from the Food and Drug Administration (FDA), and so much more. This report is one of many instances where the current administration is attacking the immune health of this whole country.

The MAHA Commission repeats the same dangerous lies about vaccines that have been disproven for decades. The authors cast doubt on credible medical research under the pretense of transparency, neutrality, and examining all sides. It casts unfounded doubt on vaccine safety by alluding to a debunked conspiracy theory about a database called the Vaccine Safety Datalink (VSD). It claims that social media companies are “silencing” anti-vaccine content, when in fact Facebook and Instagram have weakened their fact checking features in response to political pressure. Perhaps most insidiously, it then suggests vaccines must undergo additional placebo-controlled trials before being approved. While that may appear reasonable, placebo-controlled vaccine trials actually force researchers to “unethically withhold proven protection from some patients” and risk causing unnecessary delays in the creation of vaccines for seasonal variants of diseases like COVID-19

The reality is clear: vaccines are safe, effective, and life-saving, and they do not cause autism. There is no evidence that vaccines overload childrens’ immune systems, and today’s vaccines in fact contain fewer antigens, not more. The report makes cherry-picked comparisons to foreign vaccine schedules in some European nations but fails to assess the impacts any such differences have for protection from vaccine-preventable diseases. For example, the report fails to note that Europe is experiencing the worst measles outbreak in 25 years, or that Denmark – one nation the report singles out – is facing rising rates of pertussis (also called whooping cough).

The efforts of Kennedy and his allies to continue relitigating the issue of vaccines and autism harms autistic people and our families, and poses a public health threat to all Americans by eroding confidence in the safety and efficacy of vaccines.

Clinical Research
The MAHA Commission critiques various industries’ influence on clinical research. There are certainly legitimate conflicts of interest when pharmaceutical and agricultural corporations fund studies. But this report’s critiques stand in contrast to its authors’ policy actions. The current administration does not actually care about independent, high-quality clinical research. If they did, they would not be gutting the National Institutes of Health (NIH), which is the federal driver of clinical research. The administration is directing Congress to deny NIH funding, in part by attempting to cap indirect costs (which is a matter of ongoing litigation). This administration is also directing NIH to drastically reduce its employees and deny grants for studies focused on health equity. All of these decisions will drastically reduce the amount of federally funded clinical research done in America. The President and Secretary have defended these actions by noting that private industry pays lower indirect cost rates and suggesting that research institutions should use private funds instead. This would increase the influence of private industry on research, not decrease it. It means the federal government would be doing less to support independent clinical research.

Robust clinical research is necessary to inform medical best practices. Without a functioning NIH, clinical research will decline in both quality and quantity. The impact will lead to worsening health outcomes in this country and worldwide, particularly for the most marginalized.

Chemicals
The report’s claim that there is more exposure to synthetic chemicals is also an unhelpfully broad characterization of a more complicated problem. Everything is technically chemicals. Chemicals as a category are not dangerous. Some chemicals, like lead and PFAs, are dangerous, and are often more common in areas where marginalized communities live, leading to worse health outcomes. We talk about this in our Crisis In Our Communities toolkit about environmental racism. Dealing with that problem requires regulation, such as that from the CDC and its childhood lead poisoning prevention program, from a plan to limit the spread of PFAs in water, from the Food and Drug Administration and from the Environmental Protection Agency. The administration is, instead, trying to reduce the regulation of these things. Rather than addressing those real problems, the report focuses on the presence of a number of different chemicals whose impact on human health is unconfirmed. The report attempts to connect them to an increase in “childhood chronic conditions” – the unhelpfully broad category they use to include both diseases and disabilities like autism.

In particular, the report claims fluoride has been linked to an increase in intellectual disability — this is false. It’s based on a flawed study that looked at naturally-occurring fluoride, at levels many times higher than what is added to water in the U.S, and could not separate the impact of fluoride from other contaminants like lead, which we know can cause intellectual disabilities. The results can’t be used to make any claims about the amounts of fluoride used to improve dental health. It also heavily implies that autism and other developmental disabilities are tied to chemical exposure, which is a long-debunked theory. Attempts to “cure” autism based on this theory have killed at least one child.

Food & Nutrition
The report claims that 70% of children’s diets come from “ultra-processed foods” and that this can lead to health conditions such as type 2 diabetes. This is a more complicated issue than the report indicates. Not all processed foods have negative health impacts. For example, cereals are often fortified with added vitamins and minerals. While the report criticizes nutrition guidance for treating fortified foods the same as nutrients from other sources, it offers no evidence that added nutrients are not as helpful as naturally-occurring ones. The report acknowledges the criticism that “ultra-processed foods” does not have a consistent definition. Diabetes and having a higher-weight body (what the report calls “childhood obesity”) are both related to a number of genetic factors, not only diet. There’s also research that suggests a lot of the negative health outcomes from being in a higher-weight body are related to medical discrimination rooted in anti-fat bias, and weight cycling from repeated dieting.

The increase of processed foods in children’s diets is not happening in a bubble. America has high and worsening levels of food insecurity– a fact that the report fails to acknowledge or discuss in depth, despite being a clear and concerning factor for children’s nutrition. In many parts of the US, this food insecurity includes the presence of food deserts. Food deserts are places in the US where it is difficult or impossible to get much food, particularly fresh food. This makes access to less processed foods difficult in many areas, especially for people who cannot drive or are poor. People often eat more processed food because it is available where they live and what they can afford. It is what will allow them to survive.

One critical program that helps low-income people access food is SNAP, which serves one in five children in America. The report notably does not recommend improving SNAP access, despite admitting the fact that SNAP provides incentives for buying healthy foods. Instead, RFK Jr. is part of an administration currently trying to cut SNAP, which would only increase the amount of people who will rely on the foods he is demonizing. This points to the true nature of the report – aiming to blame individuals for making choices necessary to survive rather than highlighting the systemic issues that the government has the power to change.

Medicine
The claim that youth are being “overmedicalized” is extremely concerning. The report takes issue with more children being diagnosed with and receiving medication for ADHD and mental health conditions. RFK Jr. has stated that people taking mental health medication should instead be institutionalized in forced labor farms, and falsely claimed that psychiatric medications like SSRIs are responsible for mass shootings. Given that clear bias, we disagree with what the commission considers a normal amount of children taking medication, particularly where mental health disabilities are concerned. As RFK Jr himself has noted: people should not take medical advice from him. They should take medical advice from their own trusted, trained medical care providers.

Medication for medical conditions, including brain-based conditions, is not inherently good or bad as long as the medication has been tested for the intended use and everyone knows the potential risks, benefits, and side effects. Disabled kids have enough to deal with — thanks in no small part to the administration’s attempt to literally destroy the education system and its disability protections. The last thing they need is an increase in stigma driven by a commission led by individuals biased against thoroughly tested medical treatments.

We already have federally funded bodies whose job it is to make sure drugs are safe before they hit the market — unfortunately, the administration has chosen to undermine that, too.

Conclusion
Ultimately, this report continues the trend that the creation of MAHA itself began: spreading fear of disabled and chronically ill people to serve a eugenic vision of what it means to be healthy. This way of thinking equates health and human value to productivity and especially “military readiness.” Instead of offering real solutions for the people most often neglected or discriminated against by America’s health systems, it continues to cherry-pick and misuse data to stigmatize us further. It ignores the things the administration itself is doing that will make americans less healthy, like supporting drastic cuts that will mean 13.7 million Americans will lose health care and 34 million children will lose food and nutrition supports, as well as eliminating the Administration for Community Living, which funds and oversees a number of programs aimed at helping people with disabilities stay in their communities, including assistance with job and housing searches.

The MAHA commission was not made for us. It will not help us. We will continue to debunk the ableist misinformation produced by Secretary Kennedy and his Commission as it comes out.

When Catherine Lord was a psychology student a half century ago, she took part in a pioneering effort to move kids with autism from psychiatric institutions into the community. Lord was inspired by positive changes in the kids and devoted her life to developing therapies for people with autism and understanding the biology of the condition.

Today, Lord is a professor of psychiatry at the University of California, Los Angeles, and renowned worldwide for developing tools to diagnose autism, which have become clinical standards, and for her efforts to improve the lives of people with autism and their families. Along with her research, Lord maintains a clinical practice where she works with people with autism, from toddlers to adults

In conversation, Lord spoke with authority and concern as she pointed out the mendacity and danger of Kennedy’s comments, and clarified the state of autism research and science.

He has made a variety of statements about autism that suggests he doesn’t really know what he’s talking about.

What do you think of RFK Jr.’s views of autism?
It’s not clear whether he understands what autism actually is. It is a confusing condition because it is very heterogeneous. It’s very different across people, in part because it’s developmental, and in part because it’s often accompanied by other conditions or diagnoses that affect how someone functions. I don’t think that he understands that. He has made a variety of different statements about autism that suggests that he doesn’t really know what he’s talking about. And then the statements change as someone presumably is trying to help him understand it better—but the accuracy of those statements hasn’t improved.

RFK Jr. continues to promote the discredited theory that vaccines can cause autism. And yet the theory lingers. Why do you think that is?
Many people with autism when they are babies really don’t look very different from any other baby. The clearest symptoms of autism usually become apparent toward the end of the second year of a child’s life. There is a phenomenon in autism where kids, for example, learn to say a few words or do a few things and then either don’t progress past that or actually lose those skills as they become less interested in people. The phenomenon of sort of “becoming autistic” often happens between 18 and 24 months, and many of the vaccines that kids receive occur in that time or just before that time.

Watching children miss their developmental milestones is a very difficult thing for a family. It’s also a very difficult thing for people to report, because they’re not expecting this. I think just as human beings, we want an explanation of why on Earth this is happening. And so the family is making judgments about what happened three months ago or four months ago or six months ago, and it’s easy to blame it on vaccines. It’s a simple explanation and a timely one.

However, there is no evidence whatsoever that kids who have been vaccinated are more likely to have autism. There’s nothing that suggests that what’s in vaccines might cause autism. There’s just none! On the contrary, there is data that shows that autism is present long before this age time window—in terms of differences in the brain and the brain function. The chances are very likely that what is going to produce autism is present before babies are even born, but we don’t see.

What do you think of RFK Jr.’s investigation into the causes of autism?
I think it’s going to be a waste of money. And I also really worry—particularly if RFK Jr. does not do this in a very careful, thoughtful way—that someone will find something which we will then be forced to spend the next 10 years showing not to be true. So I do worry that this will cause harm, because there will be kids who are infected with diseases they did not need to get because their parents were afraid to vaccinate them. For RFK Jr. to say, “Oh, I think in five months I can do this,” when people have been trying to do that for 30 years—it just makes no sense.

Autism rates have risen in recent decades. Why do you think that’s happened?
There are several reasons why autism diagnosis is rising. When I started in this field 50 years ago, people did not know what autism was. Today, clinicians are much more aware of autism than they were even 30 years ago. It’s in the press, it’s on social media, it’s everywhere.

The second reason is that we think of autism as a much broader issue now. You can have autism and have intellectual disability or ADHD or depression. You can be an adult who didn’t get a diagnosis early on, but who—when we listen to your history—clearly always had these problems. So you can be diagnosed as an adult instead of when you were a child 20-30 years ago, which contributes to rates rising.

The third thing is that in some places, such as the U.S. and Western Europe, you can get better support if you have autism than if you have some other unnamed problem—and families realize that. Fifty years ago, autism was absolutely a last resort diagnosis that no one wanted to hear. No one came to a clinic hoping to get this diagnosis. Today that has changed. Now we see people who would like a diagnosis of autism because they can get better support. I think this accounts for most of the increase.

What are the current hypotheses about the causes of autism?
We have spent 30 years looking for the causes of autism. The emphasis in the NIH for the last 30 years has been on genetics, but we haven’t found anything of practical use. Some of the genetic work has been done with the idea that if we knew what genes were associated with autism, it could be like Down Syndrome, where you would get a test—and fix those genes using gene therapy. There was a huge hope among geneticists that they would come up with such treatments, but at this point, it has not happened. And even when it does happen, it’s going to happen for a very tiny group of children because the genetic patterns exist in less than 1 percent of autism cases.

But even that approach has been received by the autistic community as very inappropriate—“wait a minute, what are you trying to fix in me?” And what do we really want to know about babies before they’re born? So I don’t think we’re moving toward prevention for a long time and before we know a lot more about genetics. As a clinician, I’m not trying to fix autism. I’m trying to help people figure out how they can live in this world. It’s not about fixing autism. It’s about supporting them and giving people strategies for doing well.

As a practicing clinician, how do you think people in the autism community view what’s happening in Washington?
I think almost everyone is concerned. People are worried that RFK Jr. does not understand autism, that he’s using it for some purpose that is not clear. I think they’re worried that they are not being represented when he’s talking about them, because he’s not talking about the breadth of autism. And they’re worried that they could be the cause of something really terrible, if we have decreases, for example, in uptake of vaccines.

I think the one vestige of positive reaction is from parents of kids who are very handicapped, saying, well, at least he’s acknowledged they exist, that there are some autistic children and adults who have very severe impairments where they need 24-hour care and cannot speak for themselves. But then, RFK Jr. said something about profound autism being defined by toilet training, which is just completely not true. So the same families were upset.

His latest statement about using health records to create a registry, made people worry about their privacy. I’ve had a bunch of people write to me and say, “Can he have access to my records or my child’s records, and how can we stop this?” Patients are concerned about DOGE and other people who are looking through health records, not knowing what they’re seeing, but making decisions. For example, if I am evaluating someone for autism, I have to put the autism evaluation code on the medical bill, but the person may not ultimately have autism. So the hope is that they will realize it’s much more difficult than RFK Jr. thinks it is

Let’s start with one unambiguous fact: More children are diagnosed with autism today than in the early 1990s.

According to a sweeping 2000 analysis by the Centers for Disease Control and Prevention, a range of 2–7 per 1,000, or roughly 0.5 percent of US children, were diagnosed with autism in the 1990s. That figure has risen to 1 in 35 kids, or roughly 3 percent.

The apparent rapid increase caught the attention of people like Robert F. Kennedy Jr., who assumed that something had to be changing in the environment to drive it. In 2005, Kennedy, a lawyer and environmental activist at the time, authored an infamous essay in Rolling Stone that primarily placed the blame for the increased prevalence of autism on vaccines. (The article was retracted in 2011 as more studies debunked the vaccine-autism connection.) More recently, he has theorized that a mysterious toxin introduced in the late 1980s must be responsible.

Now, as the nation’s top health official leading the Department of Health and Human Services, Kennedy has declared autism an “epidemic.” And, in April, he launched a massive federal effort to find the culprit for the rise in autism rates, calling for researchers to examine a range of suspects: chemicals, molds, vaccines, and perhaps even ultrasounds given to pregnant mothers.

“Genes don’t cause epidemics. You need an environmental toxin,” Kennedy said in April when announcing his department’s new autism research project. He argued that too much money had been put into genetic research — “a dead end,” in his words — and his project would be a correction to focus on environmental causes. “That’s where we’re going to find an answer.”

But according to many autism scientists I spoke to for this story, Kennedy is looking in exactly the wrong place.

Autism is a complex disorder with a range of manifestations that has long defied simple explanations, and it’s unlikely that we will ever identify a single “cause” of autism.

But scientists have learned a lot in the past 50 years, including identifying some of the most important risk factors. They are not, as Kennedy suggests, out in our environment. They are written into our genetics. What appeared to be a massive increase in autism was actually a byproduct of better screening and more awareness.

“The way the HHS secretary has been walking about his plans, his goals, he starts out with this basic assumption that nothing worthwhile has been done,” Helen Tager-Flusberg, a psychologist at Boston University who has worked with and studied children with autism for years, said. “Genes play a significant role. We know now that autism runs in families… There is no single underlying factor. Looking for that holy grail is not the best approach.”

Doctors who treat children with autism often talk about how they wish they could provide easy answers to the families. The answers being uncovered through genetics research may not be simple per se, but they are answers supported by science.

Kennedy is muddying the story, pledging to find a silver-bullet answer where likely none exists. It’s a false promise — one that could cause more anxiety and confusion for the very families Kennedy says he wants to help.

The autism “epidemic” that wasn’t
But in 1977, a study discovered that identical twins, who share all of their DNA, were much more likely to both be autistic than fraternal twins, who share no more DNA than ordinary siblings. It marked a major breakthrough in autism research, and pushed scientists to begin coalescing around a different theory: There was a biological factor.

At the time, this was just a theory — scientists lacked the technology to prove those suspicions at the genetic level. And clinicians were also still trying to work out an even more fundamental question: What exactly was autism?

For a long time, the criteria for diagnosing a person with autism was strictly based on speech development. But clinicians were increasingly observing children who could acquire basic language skills but still struggled with social communication — things like misunderstanding nonverbal cues or taking figurative language literally. Psychologists gradually broadened their definition of autism from a strict and narrow focus on language, culminating in a 2013 criteria that included a wide range of social and emotional symptoms with three subtypes — the autism spectrum disorder we’re familiar with today.

Along the way, autism had evolved from a niche diagnosis for the severely impaired to something that encompassed far more children.

It makes sense then, that as the broad criteria for autism expanded, more and more children would meet it, and autism rates would rise. That’s precisely what happened. And it means that the “epidemic” that Kennedy and other activists have been fixated on is mostly a diagnostic mirage.

Historical autism data is spotty and subject to these same historical biases, but if you look at the prevalence of profound autism alone — those who need the highest levels of support — a clearer picture emerges. (There is an ongoing debate in the autism community about whether to use the terminology of “profound autism” or “high support needs” for those who have the most severe form of the condition.) In the ’80s and ’90s, low-support needs individuals would have been less likely to receive an autism diagnosis given the more restrictive criteria and less overall awareness of the disorder, meaning that people with severe autism likely represented most of the roughly 0.5 percent of children diagnosed with autism in the 1990s. (One large analysis from Atlanta examining data from 1996 found that 68 percent of kids ages 3 to 10 diagnosed with autism had an IQ below 70, the typical cutoff for intellectual disability.)

By 2025, when about 3 percent of children are being diagnosed with autism, about one in four of those diagnosed are considered to have high-support needs autism, those with most severe manifestation of the condition. That would equal about 0.8 percent of all US children — which would be a fairly marginal increase from autism rates 30 years ago. Or look at it another way: In 2000, as many as 60 percent of the people being diagnosed with autism had an intellectual disability, one of the best indicators of high-support needs autism. In 2022, that percentage was less than 40 percent.

Other known risk factors — like more people now having babies later in their life, given that parental age is linked to a higher likelihood of autism — are more likely to be a factor than anything Kennedy is pointing at, experts say.

“It’s very clear it’s not going to be one environmental toxin,” said Alison Singer, founder of the Autism Science Foundation and parent of a child with profound autism. “If there were a smoking gun, I think they would have found it.”

The “dead end” that’s actually given us a clearer understanding of autism’s complexity
While Kennedy has fixated on vaccines and environmental influences, scientists have gained more precision in mapping human genetics and identifying the biological mechanisms that appear to be a primary cause of autism. And that not only helps us understand why autism develops, but potentially puts long-elusive therapies within reach.

It began with an accident in the 1990s.

Steven Scherer, now director of the Center for Applied Genomics at the Hospital for Sick Children in Toronto, began his career in the late 1980s trying to identify the gene that caused cystic fibrosis — in collaboration with Francis Collins, who went on to lead the Human Genome Project that successfully sequenced all of the DNA in the human genome in the early 2000s. Scherer and Collins’s teams focused on chromosome 7, identified as a likely target by the primitive genetic research available at the time, a coincidence that would reorient Scherer’s career just a few years later, putting him on the trail of autism’s genetic roots.

After four years, the researchers concluded that one gene within chromosome 7 caused cystic fibrosis. Soon after Scherer helped crack the code on cystic fibrosis in the mid-1990s, two parents from California called him: He was the world’s leading expert on chromosome 7, and recent tests had revealed that their children with autism had a problem within that particular chromosome.

That very same week, Scherer says, he read the findings of a study by a group at Oxford University, which had looked at the chromosomes of families with two or more kids with autism. They, too, had identified problems within chromosome 7.

“So I said, ‘Okay, we’re going to work on autism,’” Scherer told me. He helped coordinate a global research project, uniting his Canadian lab with the Oxford team and groups in the US to run a database that became the Autism Genome Project, still the world’s largest repository of genetic information of people with autism.

They had a starting point — one chromosome — but a given chromosome contains hundreds of genes. And humans have, of course, 45 other chromosomes, any of which conceivably might play a role. So over the years, they collected DNA samples from thousands upon thousands of people with autism, sequenced their genes, and then searched for patterns. If the same gene is mutated or missing across a high percentage of autistic people, it goes on the list as potentially associated with the condition.

Scientists discovered that autism has not one genetic factor, but many — further evidence that this is a condition of complex origin, in which multiple variables likely play a role in its development, rather than one caused by a single genetic error like sickle-cell anemia.

Here is one way to think about how far we have come: Joseph Buxbaum, the director of the Seaver Autism Center for Research and Treatment at the Icahn School of Medicine at Mount Sinai in New York, entered autism genetics research 35 years ago. He recalls scientists being hopeful that they might identify a half dozen or so genes linked to autism.

They have now found 500 genes — and Buxbaum told me he believed they might find a thousand before they are through. These genetic factors continue to prove their value in predicting the onset of autism.

Precisely how much genetics contributes to the development of autism remains the subject of ongoing study. By analyzing millions of children with autism and their parents for patterns in diagnoses, multiple studies have attributed about 80 percent of a person’s risk of developing autism to their inherited genetic factors.

But of course 80 percent is not 100 percent. We don’t yet have the full picture of how or why autism develops. Among identical twins, for example, studies have found that in most cases, if one twin has high-support needs autism, the other does as well, affirming the genetic effect. But there are consistently a small minority of cases — 5 and 10 percent of twin pairs, Scherer told me — in which one twin has relatively low-support needs while the one requires a a high degree of support for their autism.

Kennedy is not wholly incorrect to look at environmental factors — researchers theorize that autism may be the result of a complex interaction between a person’s genetics and something they experience in utero.

Scientists in autism research are exploring the possible influence when, for example, a person’s mother develops maternal diabetes, high blood sugar that persists throughout pregnancy. And yet even if these other factors do play some role, the researchers I spoke to agree that genetics is, based on what we know now, far and away the most important driver.

“We need to figure out how other types of genetics and also environmental factors affect autism’s development,” Scherer said. “There could be environmental changes…involved in some people, but it’s going to be based on their genetics and the pathways that lead them to be

RFK Jr.’s autism commission research risks the accessibility of groundbreaking autism treatments
If Kennedy were serious about moving autism science forward, he would be talking more about genetics, not dismissing them. That’s because genetics is where all of the exciting drug development is currently happening.

A biotech firm called Jaguar Gene Therapy has received FDA approval to conduct the first clinical trial of a gene therapy for autism, focused on SHANK3. The treatment, developed in part by one of Buxbaum’s colleagues, is a one-time injection that would replace a mutated or missing SHANK3 gene with a functional one. The hope is that the therapy would improve speech and other symptoms among people with high-needs autism who have also been diagnosed with a rare chromosomal deletion disorder called Phelan-McDermid syndrome; many people with this condition also have Autism spectrum disorder.

The trial will begin this year with a few infant patients, 2 years old and younger, who have been diagnosed with autism. Jaguar eventually aims to test the therapy on adults over 18 with autism in the future. Patients are supposed to start enrolling this year in the trial, which is focused on first establishing the treatment’s safety; if it proves safe, another round of trials would start to rigorously evaluate its effectiveness.

“This is the stuff that three or four years ago sounded like science fiction,” Singer said. “The conversation has really changed from Is this possible? to What are the best methods to do it? And that’s based on genetics.”

Researchers at Mount Sinai have also experimented with delivering lithium to patients and seeing if it improves their SHANK3 function. Other gene therapies targeting other genes are in earlier stages of development. Some investigators are experimenting with CRISPR technology, the revolutionary new platform for gene editing, to target the problematic genes that correspond to the onset of autism.

But these scientists fear that their work could be slowed by Kennedy’s insistence on hunting for environmental toxins, if federal dollars are instead shifted into his new project. They are already trying to subsist amid deep budget cuts across the many funding streams that support the institutions where they work.

“Now we have this massive disruption where instead of doing really key experiments, people are worrying about paying their bills and laying off their staff and things,” Scherer said. “It’s horrible.”

For the families of people with high-needs autism, Kennedy’s crusade has stirred conflicting emotions. Alison Singer, the leader of the Autism Science Foundation, is also the parent of a child with profound autism. When I spoke with her, I was struck by the bind that Kennedy’s rhetoric has put people like her and her family in.

Singer told me profound autism has not received enough federal support in the past, as more emphasis was placed on individuals who have low support needs included in the expanding definitions of the disorder, and so she appreciates Kennedy giving voice to those families. She believes that he is sincerely empathetic toward their predicament and their feeling that the mainstream discussion about autism has for too long ignored their experiences in favor of patients with lower support needs. But she worries that his obsession with environmental factors will stymie the research that could yield breakthroughs for people like her child.

“He feels for those families and genuinely wants to help them,” Singer said. “The problem is he is a data denier. You can’t be so entrenched in your beliefs that you can’t see the data right in front of you. That’s not science.”

It seems to me that there when discussing RFK Jr. that we should distinguish between two groups:
1) those with profound autism (often reported after a round of multi-dose vaccination in young children)
2) high-functioning ASD/Asperger's

The two are not the same and shouldn't be bucketed together from a public health perspective.

The research suggests that autism is epigenetic. It has a genetic component plus an environmental component.

My guess is that the pathways and causal mechanisms that drive the two groups are entirely different.

I support RFK Jr.'s endeavors. We need more examination of the possible environmental drivers. Either the drivers contribute to increased risk for either or both of the groups above or they don't. Either way, we advance the state of the autism science.

IMHO this is a good thing.