By Kamaria Kali, Search Inc. Administrative and Development Assistant

Dignity Over Data 

The proposal of a national autism registry by Robert F. Kennedy Jr. has sparked widespread concern from disability advocates who know that decisions affecting neurodivergent lives must include neurodivergent voices.  

Autism spectrum disorder (ASD) is a form of neurodevelopmental diversity, not a defect. People with autism can work, live independently, build meaningful relationships and lead rich, fulfilling lives. Claims suggesting otherwise fuel stigma and misinformation.  

Autism describes a range of differences in communication, sensory processing behavior and social interaction. These differences are not harmful but instead represent one of many valid ways people think and engage with the world.  

There is no evidence that tracking people with autism improves public safety or health outcomes. Registries can reinforce the othering of an already marginalized community. While often framed as tools for safety or crisis prevention, autism registries lack credible data to support their effectiveness in reducing harm or improving service delivery.  

Registries also raise serious concerns regarding privacy and civil rights. This data could be vulnerable to breaches, making sensitive information accessible to bad actors. Recording someone’s diagnosis in a government database without explicit consent risks discrimination and the loss of autonomy.  

History shows that registries involving people with disabilities have often led to harm. In the early 20th century, disability records were used to justify forced institutionalization and sterilization in the US and Europe. Today, law enforcement databases and tracking systems can still result in over-policing and stigmatization of neurodivergent people, especially when behaviors are misunderstood. Without strong ethical safeguards, registries risk repeating these harmful patterns and undermining autonomy, privacy and basic rights.  

Rather than creating registries, public resources should be directed toward improving access to healthcare, inclusive education, supported employment and community services. Investment in training professionals in neurodiversity-informed practices is essential.  

At Search Inc., our Disability Awareness Trainings help organizations build more inclusive understanding environments led by self-advocates. To learn how best to support people with autism, ask them. Including people with autism in the conversation is not only the most effective way to understand and meet their needs but is essential to ensuring autonomy.  

Autism is not a public threat or a life-threatening disease. It is a neurological difference that deserves respect and understanding, not surveillance. Autism registries offer little benefit and introduce serious ethical, legal and practical risks. Policy efforts should focus on expanding access and inclusion rather than tracking people based on their differences. 

Sources 

https://autisticadvocacy.org/2025/05/crisis-of-confidence-robert-f-kennedy-jr-continues-to-use-his-position-at-hhs-to-promote-lies-about-autism-public-health/ 

https://www.forbes.com/sites/judystone/2025/04/28/autism-registry-raises-concern-over-ethics-privacy-and-intended-use/ 

https://www.theguardian.com/us-news/2025/may/05/autism-national-database-rfk-jr 

https://www.washingtonpost.com/health/2025/04/25/autism-registry-privacy-rfk-research/