1. United States
2. Ohio
3. Letter

I’m writing as a parent and advocate for the rights of autistic individuals to express serious concern about the development of a new autism registry under the Medical Advanced Health Analytics (MAHA) initiative. While this effort is being marketed as a step forward for autism research, there is a deeper issue that must be addressed — what is this registry really replacing, and why? We already have a National Autism Research Database (NARD), funded by the National Institutes of Health (NIH). NARD holds anonymized data from over 90,000 participants and has supported rigorous, peer-reviewed research for decades. The NIH — though now facing defunding — is a globally respected institution committed to ethical, evidence-based science. Creating a new registry outside the NIH’s oversight raises urgent questions. This isn’t about improving autism research — it’s about shifting power and funding away from transparent, public science and toward an initiative with unclear goals and troubling implications. We must ask: Why build something new when a trusted system already exists? What’s more concerning is the broader agenda. MAHA’s new registry appears to be part of a larger political shift — one that risks turning data collection into a tool for control rather than care. Without transparency and strong safeguards, this registry could be used to stigmatize, surveil, or harm autistic people instead of supporting them. I urge you to: • Demand full transparency on the purpose, governance, and data policies of this new registry • Oppose defunding the NIH or undermining its scientific leadership • Ensure any federal autism-related data initiatives are subject to ethical standards, community oversight, and disability rights protections Autistic people are not problems to be solved — they are individuals whose rights must be respected. Thank you for your attention to this critical issue.