Urgent Concern: Oppose the National Autism Registry Initiative

I am writing to you not only as a constituent, but as an autistic person who is deeply alarmed by the recent initiative led by Robert F. Kennedy Jr. to establish a national autism registry. This registry, which would aggregate sensitive private health data—including genomic information, insurance claims, and wearable tech data—poses serious threats to the privacy, dignity, and safety of autistic people across the country. Framing autism as a “preventable disease” and treating autistic individuals as a problem to be solved rather than people with rights is not only dehumanizing—it’s dangerous. It echoes historical practices of surveillance and control that have disproportionately harmed disabled and marginalized communities. There has been no transparent process, no meaningful autistic representation in the decision-making, and no clear safeguards for informed consent. The lack of ethical oversight, combined with Kennedy’s well-documented promotion of discredited pseudoscience about vaccines and autism, makes this initiative fundamentally untrustworthy. As someone directly affected by this, I urge you to take a firm stance against the use of federal funds for this initiative and to advocate for its immediate suspension. I also call on you to demand public hearings, robust ethical review, and the involvement of autistic-led organizations in any research concerning our community. This is not what autism advocacy should look like. We do not need to be cured, traced, or studied like anomalies. We need rights, support, and respect. Thank you for your attention and your commitment to protecting the civil liberties of all Americans, including autistic ones.