‘Lots of Red Flags’: Local Autism Advocate Reacts to RFK Jr. Misinformation

In recent weeks, U.S. Health and Human Services Secretary Robert F. Kennedy Jr. has doubled down on prioritizing autism research during his tenure with the department. Many of Kennedy’s statements on autism, though, have been disputed by experts who argue his perception of the neurodevelopmental condition is outdated at best and inaccurate at worst.

Last week, officials with the National Institutes of Health announced that the organization has been charged with compiling private medical records from several databases for Kennedy, who plans to enlist private researchers to study the data and identify “environmental toxins” that may be contributing to autism diagnoses. Despite research showing there is no singular cause of autism, Kennedy has publicly claimed his studies will identify an underlying cause of the autism “epidemic” by September.

Federal officials have since clarified that the NIH is not creating a new registry tracking people with autism. Still, Dr. Kelsey Klindt, a psychologist with the Richardson-based advocacy and resource group the Warren Center, told the Observer that Kennedy’s overall rhetoric surrounding autism raises “a lot of red flags.”

“I would never be able to send, and I would not want to send, all of my patient data to someone else,” Klindt said. “One, it's just not feasible. But it does raise a lot of questions about the ethics of it, and about the legality of it as well.”

While the Health Insurance Portability and Accountability Act (HIPAA), which regulates the privacy and security of medical information, likely would not bar the NIH or HHS from creating an autism database, several security experts told NPR the suggestion shows a “mind-blowing” willingness to violate “long-standing privacy norms.”

Kennedy has made a number of claims related to autism that have earned rebuke from advocates and medical professionals. He has referred to autism as a “preventable disease” and an “epidemic,” and suggested that some childhood vaccines could lead to autism, a heavily disputed assertion that is popular in anti-vaccination circles.

On Tuesday, Kennedy visited College Station and urged the media to focus less on measles and more on "chronic" conditions such as autism, despite Texas currently being in the throes of the worst measles outbreak in years. The reason autism should earn more attention, Kennedy believes, is because of the rising number of children being diagnosed with the disorder.

A report released last week by the Centers for Disease Control found that one in 31 children will be diagnosed with autism in the U.S., an increase from 2020, the last time the study was conducted. The study attributes some of that increase to a better understanding of the disorder among doctors, improved screening methods and better access to autism services nationally.

Klindt, who helps evaluate early signs of autism in preschool-age children, said she has to counter misinformation “every day” when informing parents of their child’s diagnosis. She worries that Kennedy’s approach to “curing” autism is not only impossible, but also contributes to a societal stigma surrounding the condition. Klindt said she worries that families could become less likely to seek out a diagnosis for their child if a negative view of autism is more widely adopted.

“We're just finally coming out of a very stigmatizing time, and there is a lot more awareness and acceptance of things like autism,” Klindt said. “So to create really a stigmatizing label again, it's going backwards.”

She added that “identifying or falsely labeling things that people with autism cannot do” is something she always tries to avoid when talking with parents of autistic children.

Kennedy, on the other hand, publicly asserted earlier this month that many children have “regressed” into autism, leaving them unable to pay taxes, hold a job, play baseball, write a poem, go on a date or use a toilet unassisted. At least two major league baseball players have publicly stated they are autistic, and the Netflix show Love on the Spectrum, which is in its third season, follows autistic people as they date.

He added that 25% of children diagnosed with autism are “nonverbal and non-toilet-trained.” Studies have generally disputed how prevalent diagnoses of extreme autism are, and most suggest that Kennedy’s figures are significantly overinflated.

“We should be supporting and empowering others regardless of ability,” Klindt said. “Most people are not defined by their greatest challenges. It is wholly unfair to treat others as anything less than human simply because they do not look, think or act like you.”