RFK's Autism Registry

Harrison Kilgore, 26

Robert F. Kennedy Jr. recently floated the idea of creating an autism registry and tracking the number of autistic people in the U.S. Historically, RFK has promoted many conspiracies around autism in the past and has had some other questionable takes on medicine that experts disagree with. RFK has most recently been focused on the “epidemic” of autism. He believes numerous reasons are to blame, but experts claim the rise in numbers is just a result of the rising awareness.  People at the Department of Health and Human Services have denied the creation of a registry, claiming they are creating a “database”: Seemingly the same exact thing, just with a more euphemistic and less human feel to the word. Critics have warned that this could increase the stigma and lead to families not seeking diagnoses and early interventions. Another concern is the privacy of the individuals and their families, especially regarding HIPAA laws. RFK plans to gather much preexisting data from government agencies, notably Medicare, Medicaid, and the CDC. When gathering new information for a study, it is bad practice to use pre-existing data, especially if the participants in the last data sets were unaware that this information would be used to such an extent. This data would be given to 10-20 outside groups that would go through vetting processes. They stated that there would be security measures in place for the data given to these groups. The government isn’t infallible, though, and neither are these groups. Even with security measures, it is a risk that people do not have the option to opt in or out of. One must ask: How is this not a plain violation of HIPAA? It is alarming that the confidentiality and privacy of those affected are not being taken seriously.

RFK himself has questionable moments while talking about autism, which further drives fear. When asked about the effects of autism, RFK says, "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 a toilet unassisted." Making any broad claim about a marginalized group of people historically doesn’t go over well, neither has tracking said group of people. It’s making a hurtful generalization to say that autism “destroys” families and implies that a person with autism can’t enjoy life. Statements like these not only dehumanize individuals on the spectrum but also reinforce outdated stereotypes that ignore the diversity and potential of autistic people. Such rhetoric contributes to stigma, fuels misinformation, and alienates the very communities RFK claims to advocate for.

RFK’s words seemed to speak to the emotional side of the topic rather than the data. It is true that an autism diagnosis can cause stress on a family, but instead of framing ASD as a disease that needs a cure, the focus should shift to supporting families by improving and expanding access to critical resources, such as early intervention services, inclusive education, community-based therapies, and support networks that empower both parents and children. Unfortunately, many of these essential supports are currently being threatened by cuts within the Department of Education, limiting access for the very families who need them most. Mislabeling this disability not only fuels negative stigmas but also places undue emotional burden on parents, especially as they navigate conversations with family, friends, and the broader public already influenced by such misinformation.

RFK’s quote also implies that autism is generally debilitating, whether that means to the individual of the family raising them. In fact, autism encompasses a large variety of independence and autonomy, where many autistic adults live on their own and have jobs.  A study published in the journal Autism found that nearly 80% of autistic adults with average or above-average intellectual abilities were living independently. Beyond independence, autistic individuals also thrive in meaningful employment, relationships, creative pursuits, and advocacy roles. For example, companies such as Microsoft and SAP have implemented neurodiversity hiring programs, recognizing the unique strengths many autistic people bring. Additionally, self-advocacy movements, often led by autistic adults, have emphasized the need to move away from deficit-based narratives and instead celebrate neurodiversity as a natural and valuable part of human variation. Framing autism solely as a burden ignores this spectrum of potential and undermines the dignity and achievements of a large, vibrant community.

Another instance of RFK being dishonest or willingly ignorant around this topic is when he refused to deny the link between vaccines and autism during his Senate confirmation hearing. He has been using this talking point for a while now, and I would be remiss if I didn’t mention what he did in American Samoa with a similar instance. In 2019, he ran a campaign against the measles vaccine in American Samoa, feeding into an outbreak where thousands of people were infected, and 83 people died, mostly children. Even after this, he continued to promote anti-vax sentiment, until April of this year where his narrative shifted following the deaths of two children who died of measles. Because of his switch in commentary, there’s been a recent outcry from the anti-vaccine community. These aren’t all the things he has said, but these statements broadly encompass what he has been saying.

Many different theories have circulated around this topic on social media. The most popular of these posts is the motive of RFK and the reason why he came up with an autism registry. The theory is as follows: 1. Make claims about a multitude of vaccines 2. Lower vax rates with skepticism 3. Create an autism registry with privacy flaws, so people will avoid 4. Avoidance will cause the numbers lower 5. The downtick was the result of fewer vaccines. While this theory may sound far-fetched for some, this only highlights a larger void in our public knowledge, discourse, and support. Portraying autism as a greater detriment than it is also increases the negative stigma in public perception. In a day and age where healthcare and education is being cut, it is more important than ever to identify misinformation and destigmatize autism. Autism is not the death sentence that RFK made it out to be, and creating archives of marginalized communities doesn’t help anyone. The U.S. should follow the example of the E.U. and support people on the spectrum, not make it taboo.