RFK Jr.'s Troublesome Autism Registry

The way RFK Jr. continues to talk about autistic kids is outright offensive.

While the whole world was distracted by the “Maryland Man” saga, RFK Jr. held a press conference about the CDC’s Autism findings back in April, and it did not go over well. Then, a few days later, NIH Director Dr. Jay Bhattacharya announced a plan to create an Autism Registry. After the subsequent justifiable outrage, he tried to walk it back days later, only for RFK Jr. to double down in an interview.

On April 16th, RFKj opened his presser by calling Autism a disease and equating the neurological difference with chronic diseases like diabetes. He said:

“And most cases now are severe. So about 25% of the kids who are diagnosed with autism are nonverbal, non-toilet trained, and have other stereotypical features, headbanging, tactile and light sensitivities, stimming, toe-locking, et cetera.”

Later in his presentation, he said that these kids would never date, play baseball, or hold a job. He seems to have gotten that 25% number from the CDC’s 2023 report on profound autism; however, the CDC study doesn’t focus on the behaviors of autistic kids. There hasn’t been a study that would identify the percentage of autistic kids who can’t use the toilet. The closest would be a 2024 study that asked parents how they would classify their child’s level of autism. They found that roughly 10% of parents claimed their kids had severe autism, and of those, 67% stated their child had trouble with bathing. Infuriatingly, RFK Jr. has attached the worst stereotypes to that number; no wonder parents and autistic people were outraged.

To understand where this idea of “profound autism” comes from, and why RFK Jr. is just flat out wrong and offensive with this statement, we have to take a step back and look at the changes made to the Autism diagnosis in the DSM-5.

Once upon a time, I was considered an Aspie, the colloquial name for Asperger’s Syndrome. What separated Aspies from the “high-functioning autistic” was our language skills. Aspies would talk your ear off, especially if it’s a topic they love, but high-functioning autistics tend to struggle with their communication skills. After that, your place on the autism spectrum was determined by how well you functioned in society and communicated with others. All that changed with the DSM-5, which came out in 2013. It erased Asperger’s as a diagnosis (because reasons) and lumped us all into one giant pile. The APA (American Psychological Association) then created three levels to try to help sort out this newly, overly broad spectrum.

According to the DSM-5, someone like me - who struggles in social situations, has trouble making and keeping friends, has a couple of fixed interests, and generally avoids eye contact but can speak up and advocate for myself - is a level 1. One of my children, formerly considered an Aspie, would be classified at level 2 despite decent language skills, while the other, formerly considered high-functioning, is now a level 3, AKA severely autistic. But my level 3 kid currently holds down a steady job making good money, despite communication difficulties.

Our family’s experience with what used to be called high-functioning autism is vastly different from what most people think of as “severely autistic.” This is why the new term “profound autism” was coined in 2022. Profound autism is meant to refer to those who need 24/7 care, have a fairly low IQ, and will never be able to live on their own. This is where the stereotypes RFKj referred to belong; however, the CDC seems to have classified almost everyone in level 3 as profound. According to the 2023 CDC report on profound autism, “We categorized children as having profound autism if they were either nonverbal or minimally verbal or had an IQ <50.” If my high-functioning yet barely verbal kid counts as “profound” the same way that a severely autistic person who struggles with basic self-care does, how can I trust the CDC’s numbers? How can I trust RFK Jr. and the rest of the study authors who seem to be parroting the 2023 CDC numbers?

Ironically, that same study directly refutes RFK Jr. next claim, which is that the increase could not be attributable to better diagnostics. The study found that while the number of autism diagnoses increased over the years, the number of kids with profound autism stayed relatively steady.

“While the prevalence of both profound and non–profound autism increased over time (2000-2016), the increase was greater for non–profound autism (from 1 in 254 to 1 in 70 children aged 8) than for profound autism (from 1 in 373 to 1 in 218 children aged 8); while attenuated, this trend remained when we used the 2002 study year as the starting reference point. This finding suggests that the composition of the identified autism population changed as the overall identified autism prevalence increased.”

To support his claim that autism is a growing epidemic, RFKj continues to cite a 1970 study in Wisconsin that found autism rates were less than 1 in 10,000 kids and compares that to today’s numbers of 1 in 31, without taking into account the ever-changing diagnostic standards from the 70’s to today. This increase in prevalence can be traced to not just better diagnostics but also the broadening of the spectrum to include people “with milder symptoms, stronger language skills, and higher IQs,” according to Christopher Banks, president and CEO of the Autism Society of America.

One could also argue that today’s numbers are artificially inflated by misdiagnosing autism in toddlers. Because early intervention and behavioral therapy are considered key to helping autistic kids integrate into society, the APA started screening toddlers as young as 12 months old in 2007. But a 2023 study found that as many as 37% of toddlers diagnosed between the ages of 1-3 years old were no longer considered autistic by ages 5-7. Autism is a difference in how the brain is hard-wired; it isn’t something you just outgrow.

RFK Jr. also claims that the idea that better diagnosis is responsible for the increase is entirely bogus. He cites a 2009 California MIND study authored by Irva Hertz-Picciotto. Her study found that better diagnostics, milder cases, and the earlier age at diagnosis could be responsible for roughly 5 of the 8x increase seen in California at the time. However, in her conclusion, she mentioned several factors that she could not account for:

“Wider awareness, greater motivation of parents to seek services as a result of expanding treatment options, and increased funding may each have contributed, but documentation or quantification of these effects is lacking.”

She then went on to state that to truly know if the increase was due to awareness, we should do a study of 20-30 year olds, and see if we can find 4-8 undiagnosed autists for every one previously diagnosed. That study was never done. I’m sure it’s also just a coincidence that Ms. Irva was also the lead on another 2006 study, aimed at proving an environmental component as the cause of at least some of the increase. Make of that what you will.

Of course, that didn’t stop RFK Jr. from drawing the absolute wrong conclusion, and what he said next only proved that my previous concerns are absolutely valid:

“These are kids that, this is a preventable disease. We know it’s an environmental exposure. It has to be. Genes do not cause epidemics. It can provide a vulnerability. You need an environmental toxin, and Irva Hertz-Picciotto pointed out that because of this mythology, that the amount of money and resources put into studying genetic causes, which is a dead end, has been historically 10 to 20 times the amount spent by NIH and other agencies to study environmental factors, to study exposures, to study external factors, and that’s where we’re going to find the answer.”

Maybe if I say it slower, RFK Jr. will finally understand - Autism. Is. NOT. A. Disease. It’s not. It never has been. Autism is, and has always been, classified as a neurodevelopmental disorder. It is quite literally a difference in the way the brain is wired. As I said before, 80-90% of all cases have a clear genetic component. For RFK Jr. to declare that genetics is a dead end, and he will find the cure to this preventable disease, is the most infuriating, exasperating, insulting, offensive…. I can’t even.

During the Q&A portion, RFK Jr. said that if better diagnostics were the cause, we should see lots of old people in the 70s running around banging their heads. Since we don’t have a bunch of profoundly autistic 71-year-olds, clearly it’s something that is only affecting the younger people. There is a GIANT flaw in his logic. Studies show the average life expectancy for someone with profound autism is sadly somewhere in the 39-54 age range. Autistic adult Stephanie Bethany has a great write-up explaining autistic life expectancy. Health and comorbidities play a considerable role, as often autistic people, especially those in the profound category, have other medical issues. So the reason that RFK Jr. and his study-buddy Dr. Walter Zahorodny don’t see 71-year-old profoundly autistic people milling about is because there likely aren’t many. Those who have outlived their caregivers are likely to be in assisted living facilities. The oldest, well-known, high-functioning autist was Donald Triplett, the first kid to be diagnosed by Dr. Leo Kanner. Donald died in 2023 at the age of 89.

Sidebar: Dr. Walter Zahorodny, who parroted all of RFK’s talking points at this presser, was the author of a 2020 study that claimed that as many as 1 in 4 children with autism were NOT diagnosed, mainly in the black and Hispanic communities. He recommended that doctors start screening all kids to find the ones who weren’t being diagnosed. But now he’s on stage with RFKj, declaring that the increase in diagnosis must be due to an environmental cause. Make it make sense.

Here’s a theory I have not heard from RFK Jr. - the Education for Handicapped Children Act was passed in 1975. Prior to that, most schools refused to take on a special needs child. In 1990, it was rewritten as IDEA, the Individuals with Disabilities Education Act. The federal government started funding public schools’ special education programs, and today, it funds IDEA to the tune of over $15 billion. Remember No Child Left Behind, passed in 2001? When the school’s federal funding depended on how well the kids did on a standardized test, special needs kids were allowed to take a modified exam, and their test scores were weighted differently. It’s almost like public school systems nationwide were given a couple of big incentives to suddenly label everyone. Interestingly, autism diagnoses start climbing exponentially when federal money for the schools gets involved.

I added the legislative & DSM information to the graph.

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With the way RFK Jr. and his study-buddies have been talking about autism, it’s no wonder the autistic community raised holy hell over the NIH plan to create an Autism Registry using data pulled from insurance claims, electronic medical records, and wearable health-monitoring devices like smart watches.

After watching Dr. Battacharya explain the concept at the NIH’s Council of Councils, I understand what he’s going for, but I have some significant concerns. Dr. B spoke about the struggle to get health data from all the various sources they use, and said that the NIH has even wound up buying the same data more than once by accident. Because of this issue, he wants this “Real World Platform” to be the data repository for health data, not just about autism, but also all chronic diseases. They are starting with data from Medicare/Medicaid, but they plan to add in data from the VA, Tricare, and private healthcare companies. He wants the NIH to be the one-stop shop for all health-related data needed for any future research.

The problem is patient privacy. Any data accessed by researchers has to have all the Personally Identifying Information (PII) removed. However, the platform is supposed to allow for “real-time health monitoring” as well. Dr. B said that they would “preserve the privacy of the patient within the platform.” That seems to indicate that the patient’s PII is somewhere on the platform. Dr B promised that they would use “state-of-the-art protections to ensure that although linkages across the data systems would be permitted inside the platform, that those linkages don’t threaten confidentiality of patients.” That seems to indicate that there will be a way to keep a patient’s file updated and linked together across data sources. That means there must be a file somewhere within the system that would link the patient’s PII with whatever type of anonymizing ID system they use.

Dr B. promised that researchers would not only never get the PII, but also would not be allowed to download any data. He seems to think this will make it safer for the patients, but that just means that any researcher using the NIH’s new platform has to be online to work with the data. That means that a massive database of American health information would be online and accessible 24/7. The federal government was hacked over 1200 times from 2014-2023. Do we really trust that this platform would never get hacked?

While I can see both the good and bad about this idea, the media ran with the idea of an autism registry. The outcry from the autism community was swift. Within two days, someone from the HHS told the media that there were no plans to create an autism registry. But RFK Jr. undercut that statement during a recent appearance on Laura Ingraham’s show:

“This is an existential disease. Every other disease like this has a registry so that—and its voluntary—public health officials can monitor the numbers. It’s not private information, it’s not information that is gonna go out to other agencies, it’s a voluntary system where your privacy is protected. Just a system for keeping track of a disease that is now becoming debilitating to the American public.”

Once again, autism is not a disease. I have a very hard time trusting that RFK Jr. and his study-buddies will do any actual research. The more any of them speak, the clearer it becomes that they are not actually looking for answers. They have already decided on the answers; they just want the evidence to prove it.

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Lorraine Yuriar is a wife, mother, and lifelong conservative currently stuck in a very blue state.