We fact-checked RFK Jr.’s claims about the supposed autism epidemic
U.S. Secretary of Health and Human Services Robert F. Kennedy, Jr., (RFK Jr.) misrepresented Centers for Disease Control findings, and autism spectrum disorder itself, on a nationwide scale during his news briefing last month. Although the news briefing drew outrage, it was just the start of RFK Jr.’s plans to address the supposed “autism epidemic” in the United States.
This month, the National Institutes of Health (NIH) and the Centers for Medicare & Medicaid Services (CMS) announced a “real-world data platform” that will enable data sharing between the two departments. Details are still forthcoming, but the prospect of an autism database is cause enough for alarm. Pressing questions about how patient privacy will be maintained remain unanswered. Further, this platform has been called a “pilot” research program—which means more are in store.
As a disability policy researcher and a part of the autistic community, I was personally thrown into fact-checking mode throughout the April news conference. RFK Jr. has repeatedly shown that he does not understand what autism is or see us as valuable members of society, so his intent to gather our health records and study the “epidemic” is a terrifying idea. His plans deserve nothing short of condemnation, debunking, and action. I implore allies to listen to the autistic community and push against the stigma RFK Jr. intends to sow in our name.
What is autism, actually?
Autism goes by many different names; autism spectrum disorder, ASD, autism, the spectrum, etc. There are an estimated 5.4 million autistic adults in the United States today.
From a medical perspective, Autism Spectrum Disorder (ASD) is a developmental disability that impacts a child’s neurological growth, expression, and development. Symptoms can include challenges with social communication, restricted interests, and repetitive behaviors. Autism is often separated into three levels based on support needs; level one (requiring support), level two (requiring substantial support), and level three (requiring very substantial support).
From a social perspective, ASD is a form of “neurodivergence,” a term that refers to brains which operate differently than what is considered “typical” or expected. The three support levels of autism were introduced largely in response to the expansion of ASD into a spectrum rather than a rigid diagnosis. As we often say — if you have met one autistic person, you have met one autistic person.
The CDC’s autism prevalence study.
On April 17th, 2025, the CDC published a study based on the Autism and Developmental Disabilities Monitoring (ADDM) network survey study. Researchers focused on the prevalence and identification of Autism Spectrum Disorder (ASD) among children born in 2014 and those born in 2018. This survey is done every two years and has found consistent increases in prevalence since its origin in 2000. For example, ASD prevalence was one in every 150 children in 2000, and this has grown to one in every 31 children in 2022.
RFK Jr.’s news briefing: A response from an autistic person.
“Autism destroys families and, more importantly, it destroys our greatest resource—which is our children… These are kids who will 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. We have to recognize we are doing this to our children and we need to put an end to it” - RFK Jr., 2025
As someone who identifies as a member of the autistic community, hearing this made me take a genuine pause and consider the way this administration views people like me. RFK Jr. clarified in a later interview that his comments were only in reference to those with “low functioning, full blown” autism (level three autism). That distinction does not make his comments okay.
I am able to write this article, hold employment, and I have a lovely partner. In this administration’s eyes, I might be one of the “high functioning” autistics, but this is a designation I deeply bemoan. An attack on any member of the autistic community, regardless of their support needs, adds to our stigmatization as a whole. There is no way to “put an end” to level 1 OR level 3 autism. We will always exist, the only difference throughout history is if we have been allowed to do so openly or not.
I also want to note how morally inept it is to refer to children as resources. I feel that RFK Jr. let his deeper thoughts slip out through that comment – because heaven forbid the children of the United States fail to live up to the expectations that come with being little more than a “resource” in a capitalist regime!
If we are able to run in the rat race of productivity to hold a job and pay taxes, then perhaps RFK Jr. did not intend for his message to demean us — but why should playing along with the capitalist system be the gateway to respect when these systems were never made with neurodivergent people in mind?
The disparaging language throughout RFK Jr.’s news conference went beyond lamenting those unable to hold a job or pay taxes. He spewed false rhetoric on countless other topics that I want to highlight. See below for the fact checking section.
What was misrepresented in the news briefing?
Claim: "One of the things we need to move away from today is this ideology that the autism diagnosis, that the relentless increases in autism prevalence, are simply artifacts of better diagnosis, better recognition, or changing diagnostic criteria.” (RFK Jr., 2025)
Better diagnosis and screening DOES play a role.
It was not until 2008 that the American Association for Pediatricians (AAP) published guidelines recommending that all children be screened for ASD during their first-year wellness visits. This was partly due to the fact that two of the four most common ASD screening instruments were not published until the early 2000s. Studies suggest that new identification factors, such as better screening tools, contributed to increases in ASD prevalence.
There have also been improvements in accurate ASD diagnoses among Americans of color. In particular, ASD was once thought to be more common among white Americans, but we now know this was likely due to racial gaps in diagnoses. More recent CDC data has confirmed that improvements in provider knowledge and screening has led to a reversal in trends, now suggesting that Americans of color are slightly more likely to be autistic. In fact, the same ADDM study that RFK Jr. discusses in this news briefing supports this claim and contradicts his own argument. A direct quote states that “the reversal of past patterns in prevalence by race and ethnicity and SES is consistent with increased access to and provision of identification services among previously underserved groups.”
Changing diagnostic criteria DOES play a role.
ASD has gone by at least three different diagnostic labels throughout its time in the Diagnostic and Statistical Manual of Mental Disorders (DSM), each with different diagnostic criteria. These labels were childhood schizophrenia in the DSM II (1968), infantile autism in the DSM III (1980), autistic disorder in the DSM IV (1994), and autism spectrum disorder in the DSM V (2013). Diagnostic criteria changed slightly with each iteration, often causing the number of cases to increase accordingly due to broadening terms. For example, a study found that the DSM IV’s changed diagnostics criteria contributed to 26.4 percent of the new ASD diagnoses in California between 1992 to 2005.
As yet another misstep during the news briefing, RFK Jr. cited a study on autism prevalence published in 1970 and failed to mention the fact that it used an outdated definition of autism. Particularly, it relied on the “childhood schizophrenia” diagnostic criteria in the DSM II. This means that RFK Jr.’s argument about ASD’s increasing prevalence relies heavily on data from a study published in a time before ASD was even a diagnosis.
Photograph via Mass 50501
Claim: “This is a preventable disease” (RFK Jr., 2025)
First, autism is not a disease. The D is ASD stands for disorder, not disease. Second, there are studies looking into maternal causes of ASD, like vitamin D deficiency or toxic exposures, but no studies have gone beyond fringe hypotheses.
Not only is there no hard evidence of ASD being preventable, many in the community would reject the offer of their autism being prevented. I know that, if I were offered a chance to go back in time and tell my mother to take her vitamins and shun the cleaning supplies so that she could have a “healthy” child, I would reject that offer harshly. Contrary to this administration's beliefs, autism is not a purely negative diagnosis. Many autistic people feel that their identity is intimately linked with their diagnosis - the two cannot be separated, nor would they want it to be!
This is not to diminish the fact that autism can impact people’s lives in very difficult ways. Autistic people often face higher rates of depression, suffer social isolation, and have to navigate unique challenges in ways non-autistic people would not understand. It can also be dangerous to be autistic. For example, autistic people are more likely to engage in self-injurious behaviors, face police brutality, and be the victims of crimes.
Yet I still believe that the target should be social support, not erasure and hypothetical prevention. My fear is, if people go to extremes hoping to prevent the “tragedy” of autism, what will happen when the prevention inevitably fails? The answer is that the autistic child will grow up knowing they were not wanted. Or, worse yet, abhorrent mercy killings will increase. These are terribly dangerous waters.
Claim: “25 percent of those with autism are non-verbal and non-toilet trained” (RFK Jr., 2025)
This claim was based on a recent CDC study into the prevalence of level three autism among those on the spectrum. A child is considered to have level three autism (also called profound autism) if they are nonverbal, minimally verbal, or having an intelligence quotient <50.
The study found that, among those on the spectrum, 26.7 percent are level three. Within this group, only 57.4 percent were nonverbal or minimally speaking. This means that, after the math is done, only about 15.3 percent of those on the spectrum are nonverbal or minimally speaking.
Further, this study makes no mention of “toilet training” difficulties, which is an incredibly dehumanizing and inaccurate reach to be made purely based on the presence of level three autism. Studies have suggested that those with level three autism take longer to be successfully toilet trained, but it is inaccurate to use data about children to insinuate that these issues carry into adulthood. There are no generalizable studies, let alone accurate statistics on this point.
Claim: “Autism is increasing in severity” (RFK Jr., 2025)
The same CDC study about level three autism prevalence directly refutes this. To elaborate, the study says that the year with the highest reported fraction of cases was 2000 (40.5 percent of children with autism were level three) and the year with the lowest reported cases was 2016 (24.3 percent)—suggesting decreases in more severe cases.
Claim: “It's an environmental exposure. Genes do not cause epidemics. They can provide vulnerability, but you need an environmental toxin.” (RFK Jr., 2025)
This is not an epidemic. An epidemic is a rapid outbreak of a disease within a specific area. As fact-checked above, increases in ASD prevalence rates are largely explainable by improved screening methods and changing diagnostic criteria. Further, the increases in prevalence rates are not specific to the United States.
It is absolutely common knowledge among researchers that ASD has a strong genetic component. Studies suggest that heritability could account for up to 90 percent of cases at the high end, and around 50 percent at the low end. This is simply a case of RFK Jr. ignoring key studies in order to build his prevention narrative.
Claim: “The costs of treating autism in this country by 2035 will become a trillion dollars a year.” (RFK Jr., 2025)
This one is frankly humorous. The study that once supported this claim was retracted by the scientific journal it was published in for its improper methodology, use of non-representative data, misrepresentation of incidence rates, insufficient attention given to factors that could have impacted incidence rates, inflating costs, and failure to consider changes in definitions. It is true that ASD is associated with many unique costs but RFK Jr. clearly cherry picked whichever study found the greatest burden of cost.
It is true that a different, non-retracted, study has suggested that ASD costs come to $268 billion at the low end and $1 trillion at the high end per year. The study determined that the most accurate cost of ASD in the United States would be somewhere in the middle of these two extremes, approximately $461 billion per year. Still, I want to highlight that the study defined the “cost” of autism in a broad way which extended beyond costs associated with the diagnosis itself. The estimates combined the cost of medical care, residential care, special education programs, in-home care, transportation, employment support, and lost productivity. In particular, lost productivity and transportation are two poorly defined categories which might have inflated the estimates.
Claim: “If the epidemic is an artifact of better diagnostic criteria or better recognition, then why are we not seeing it in older people?” (RFK Jr., 2025)
RFK Jr. is overlooking a key part of American history. It is very recent that disabled children are given the right to age into disabled adults with any level of dignity or independence. This is because those with physical or mental disabilities were often institutionalized and hidden from public view in a very literal way. These institutions were rampant until the 1980s and notorious for their civil rights abuses. Researchers have been in the process of looking at past institution records, often finding that many of the “patients” meet current ASD criteria. Unfortunately, a large part of why there appears to be fewer autistic elders is that the abuse and neglect in these facilities led to many premature deaths. After decades of lawsuits and battles, many institutions closed and the “patients” were finally able to leave, but the legacy of these facilities remains.
Similarly, the fear of being sent to an institution likely prevented many people from seeking out ASD diagnoses or support. It wasn’t until the 1980s that this looming threat began to dissolve. It is also important to note that the average life expectancy of people on the spectrum is much shorter than the general population in the United States. In particular, autistic people live to be around 36 years old, whereas the general population lives to be 72 years old.
What is next?
#1 This administration wants to designate a cause of autism
RFK Jr. said that Donald Trump gave him a mission on day one—find what's causing the “autism epidemic.” The same Donald Trump who suggested maybe his nephew with intellectual and developmental disabilities should “just die” has set his sights on an autism cure. That sends a chill down my spine.
RFK Jr. says that the Health and Human Services (HHS) department will continue issuing grants to researchers and that they can research “without any kind of fear that they’re gonna be censored…that they’re gonna be defunded, [or] delicensed.” This set off an alarm in my head—recall that the infamous study which erroneously suggested that the MMR vaccine causes autism caused the researcher to get his medical license revoked.
#2 A previously floated idea of an autism registry is taking shape, as a database
In mid-April, there was outrage over NIH Director Jay Bhattacharya’s plan to use private health records to conduct “real-time health monitoring” for an autism registry. This aligns with comments made by RFK Jr. during his April news briefing, where he stated that the CDC’s study came “two years later than it should’ve been” and that he wants “real-time data.”
On May 7th, this took form as the HHS announced a partnership between the NIH and the CMS to build “a real-world data platform” to determine “the root causes” of autism. This will enable advanced research across the claims data and electronic medical records of Medicare and Medicaid enrollees with a diagnosis of ASD. It is my belief that this May announcement used the phrasing “real-world data” as a replacement for “real-time data” because the latter drew too much concern in April.
Even with the slight difference in phrasing, there is not enough information to know if the intent of gathering real-time data for a registry has changed. A CBS article reported that an NIH official responded to these concerns by claiming that “We are not creating an autism registry. The real-world data platform will link existing datasets.” Linking datasets may not directly indicate a registry, but, at the least, it suggests a database and, at that point, it is just semantics. As David Mandell, a longtime autism researcher at the University of Pennsylvania, told the Times; this partnership will make a "registry without the word 'registry' in it."
This reflects a dangerous next step of the administration. My fear is that these “linked datasets,” whatever that ends up meaning, will find their way to DOGE due to the lack of patient protections. On May 12th, these concerns were expressed in a letter signed by multiple disability rights organizations who expressed concerns about the database’s “unclear purpose and potential for abuse.” Further, they call on the “HHS and NIH [to] engage with disability and civil rights advocates [to] implement fundamental safeguards." This letter has been directed to RFK Jr., there have been no responses yet.
If someone is diagnosed with ASD—what does that mean for them and their privacy? With this database, or registry as some may still call it, that question remains in the air.
What you can do.
Illinois governor JB Pritzker has vowed to protect constituents' data. Urge your representative, and especially your governor (Maura Healey, if you’re reading locally), to do the same!
If you have an ASD diagnosis and are concerned about how to protect yourself: Consider sending a “certified registered return receipt requested” letter to any healthcare providers or insurance companies that are aware of the diagnosis. In this letter, state that you do not authorize release of your information under HIPAA to any government agency or employee. A template for this is provided here. Make sure you have proof that the letter was received.
Support autism acceptance organizations that are led by autistic people. For example, ASAN.
Respect if someone you know does not want to be open about their diagnosis at this time!
Thank you for reading.
Remember, nothing about us without us.
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