RFK Jr. to launch national autism registry collecting Americans’ medical records

Health and Human Services Secretary Robert F. Kennedy Jr. is planning to start a national autism registry to track Americans who have autism.

How will RFK’s national autism registry work?

Why you should care:

Robert F. Kennedy’s initiative calls for the collection of Americans’ private medical records for autism research.

The data collected would be gathered by the Department of Veterans Affairs and Indian Health Service, which National Institutes of Health Director Dr. Jay Bhattacharya explained to Newsweek that individuals' confidentiality would be protected.

RELATED: RFK Jr. calls autism a 'preventable disease,' launches environmental study

Bhattacharya told CBS News that every institute at the agency will be involved in the autism project, adding that the group is still in talks about the amount of money that will be allocated for the autism research effort. 

On April 16, Kennedy claimed that children in the U.S. are being diagnosed with autism at an "alarming rate" adding that it’s a "preventable disease," as he vowed to conduct extensive studies on environmental factors linked to autism, predicting that there would be answers by September. 

RFK’s plan met with criticism

The other side:

The nonprofit advocacy group Autistic Self Advocacy Network is criticizing Robert F. Kennedy Jr.’s new initiative to research causes of autism.  

"It is disgusting that Secretary Kennedy is calling for efforts he believes will reduce the amount of autistic people who exist, whether through a "cure" or "prevention." Our existence is not a "cataclysm," as he called autism in his Fox News interview," the organization wrote on its website. There is no evidence that autism is actually becoming more common (rather, we as a society are getting better at identifying it, and diagnostic standards have appropriately been widened)." 

Citing a social media post on X, Newsweek noted that one user wrote: "This isn't about health. This is about control. It's about fear. It's about marking people. People like me. Neurodivergent people."

Another person wrote, "RFK Jr.'s autism registry is a chilling overreach, tracking private medical data without consent violates HIPAA and echoes eugenics. It's not about health; it's about control. Stop this now," according to Newsweek.

What is autism?

Dig deeper:

Autism, or autism spectrum disorder, is defined as a developmental disorder with symptoms that appear within the first three years of life. According to autism.org, the word "spectrum" indicates that autism appears in different forms with varying levels of severity, meaning each person with autism experiences their own unique strengths, symptoms, and challenges. 

The Centers for Disease Control and Prevention (CDC) explained on their website that ASD begins before the age of 3 years and can last throughout a person's life, although symptoms may change over time.  

According to the CDC, some kids show ASD symptoms within the first 12 months of life. In others, symptoms may not show up until 24 months of age or later. And some children with ASD gain new skills and meet developmental milestones until around 18 to 24 months of age, and then they stop gaining new skills or lose the skills they once had.

Newsweek noted, citing the CDC, that in 2022, 1 in 31 children were identified with autism spectrum disorder. And in 2000, 1 in 150 children were diagnosed with autism.