Health and Human Services Secretary Robert F. Kennedy Jr. has announced plans to establish a national autism registry aimed at better understanding and researching autism spectrum disorder (ASD) across the United States.
What Is the National Autism Registry?
Kennedy’s initiative proposes a centralized database that would track individuals diagnosed with autism in an effort to support research into its causes and trends. The data would be compiled by federal agencies including the Department of Veterans Affairs and the Indian Health Service. According to National Institutes of Health Director Dr. Jay Bhattacharya, patient confidentiality will be strictly protected throughout the process.
Dr. Bhattacharya told CBS News that all institutes within the NIH will participate in the effort, and discussions are ongoing regarding the budget required to support the initiative.
Why It Matters
Speaking on April 16, Secretary Kennedy described the rise in autism diagnoses in the U.S. as “alarming” and called autism a “preventable disease.” He committed to funding environmental studies aimed at identifying potential causes, with a goal of producing preliminary findings by September.
Kennedy’s comments and approach have sparked a wide range of reactions, from support for deeper scientific inquiry to strong opposition from disability rights advocates.
Backlash from Advocacy Groups
The Autistic Self Advocacy Network (ASAN), a nonprofit representing individuals on the spectrum, strongly criticized the proposed registry. In a public statement, ASAN expressed concern that Kennedy’s comments and intentions suggest a desire to reduce the autistic population through prevention or potential “cures.”
“It is deeply offensive that Secretary Kennedy describes autism as a ‘cataclysm’ and suggests that preventing autistic people from being born is a public good,” ASAN said. “Autism is not a disease to be eradicated, but a natural variation of human diversity.”
Critics have also raised privacy concerns, with some social media users likening the proposed registry to past government overreach and expressing fears over potential violations of medical privacy protections under HIPAA.
Understanding Autism
Autism spectrum disorder is a developmental condition characterized by differences in communication, behavior, and social interaction. Symptoms typically emerge within the first three years of life and can vary widely in type and severity.
According to the Centers for Disease Control and Prevention (CDC), some children begin showing signs of autism in the first year, while others may not exhibit noticeable symptoms until age two or later. In some cases, children may appear to develop typically before losing previously acquired skills.
The CDC reported that in 2022, approximately 1 in 31 children were diagnosed with ASD, compared to 1 in 150 in the year 2000. Experts note that this increase is likely due to greater awareness, improved screening methods, and broader diagnostic criteria—not necessarily a rise in actual cases.
Moving Forward
As the conversation around autism research and rights continues to evolve, RFK Jr.’s proposal brings a new level of national attention to the complex and deeply personal issues facing autistic individuals and their families. While the goal of advancing scientific understanding is broadly supported, many advocates emphasize the importance of inclusion, respect, and protecting the rights of neurodivergent individuals in any federal initiative.