Embedded Files
by Haley Hart
May 18, 2025On April 16, 2025, Robert F. Kennedy Jr. spoke at a press conference announcing a new Centers for Disease Control and Prevention report that found the prevalence of autism rising to one in 31 among 8-year-olds.
Over the course of the conference, Kennedy made several broad statements that did not sit right with many, claiming “autism destroys families” and is an “individual tragedy as well.” Kennedy also claimed that many autistic children were at one point “fully functional” and “regressed into autism when they were 2 years old.”
To add on, Kennedy made many statements which autism activists took issue with, at one point in his speech claiming autistic children are children 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.” Kennedy also said, “Most cases now are severe. Twenty-five percent of the kids who are diagnosed with autism are nonverbal, non-toilet-trained, and have other stereotypical features.”
RFK Jr. speaking at press conference (Photo Credit: Austin American-Statesman)
According to a PBS News report regarding the matter, medical experts, as well as with people on the autism spectrum, told the news publication, PolitiFact that “Kennedy’s portrayal was skewed,” proven by the 2023 study written by CDC officials and university researchers, that found that only one-quarter of people on the autism spectrum have severe limitations. This is on the “high end of studies,” in fact, with many individuals within that one-quarter of the autism population not possessing any of the limitations Kennedy mentioned.
Though so many are taken aback at Kennedy’s seemingly ignorant comments, the concern has mainly shifted to what exactly Kennedy plans to do about what he perceives to be occurring with autistic children.
Kennedy shared that he had plans of allowing The National Institutes of Health (NIH) to collect the private medical records of many autistic Americans from several different federal and commercial databases to give to researchers in order to make a database of every single American on the autism spectrum. The database itself is meant to track autistic people and their health in a major research study.
Autism experts and advocates are heavily pushing back against the creation of an autism database, highlighting the ways in which such databases could be misused. On one hand, the US Department of Health and Human Services (HHS) denies the database is any sort of registry; on the other, the agency did confirm a database of autistic people will soon power a $50 million study on autism.
A petition against the registry is ever-expanding, gaining thousands of signatures in a single day, going from 2,500 to nearly 35,000 signatures within 24 hours.
According to The Guardian, first-time petition creator Ryan Smith, a parent of two neurodiverse children living in Idaho, said, “I’m a quiet person who likes to just be in the background, but I feel really, really, really strongly about this, and I have to speak up for my kids who can’t speak for themselves.”
The petition gathered nearly 50,000 names before declaring victory when HHS appeared to back track the plan. “We are not creating an autism registry,” an HHS spokesperson said.
However, the only difference seems to be the title. The agency is working on creating a “real-world data platform” to “link existing datasets” for the research into causes of and treatments for autism, the spokesperson confirmed. “They’re saying it’s not an autism registry, but it sounds like they kind of just changed the name of it,” said Amy Marschall, an autistic psychologist. Additionally, many worry that the database could amplify the already growing stigma around autism, and it could potentially stop families from seeking out diagnoses and care.
“And at worst, I worry that we’re on a slippery slope to eugenics,” Smith said. “My mind immediately goes to history and things that happened in Nazi Germany. That’s extreme, but it feels like a possibility.” He then pointed out the fact that disabled individuals were the first to be targeted then.
“Are you going to use this as an excuse to take away my rights, to hold me against my will, to prevent me from having children, to take away my right to manage my own finances?” Marschall asked.
Diana Schendel, a professor at the AJ Drexel Autism Institute at Drexel University, added to the conversation sharing, all of these concerns are why “human research protections are in place, to protect against that kind of damage and to protect the people’s interests.” “You can also create databases using existing data, which is what they seem to be describing,” Schendel said of the HHS project. But “you can’t just collect the information and then ask permission later,” said Schendel.
The Guardian stated that “the national project could jeopardize important research on autism,” with Schendel saying, “It’s going to make people even more wary of participating in research. They could withdraw from projects that are already going on,” and that Kennedy’s timeline for research results is a definite red flag.
“The idea that you can take a lot of different datasets and pool them together into a single dataset and perform an analysis with any kind of meaningful answer in a very short period of time is naive,” Schendel said. “It would be a mess.”
Sources: PBS News, The Guardian
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