The federal government is in the process of creating a national database that includes information on autistic individuals, gathering private medical information from families nationwide, many of whom have not provided their consent. This initiative, spearheaded by RFK Jr. and backed by the NIH, purports to be for research purposes. However, when the rhetoric is stripped away, the reality is unsettling: they are compiling a registry.

A registry of individuals like my 3 year old child. A registry of autistic individuals — monitored, categorized, and documented under the pretense of public health. This is not assistance; it is surveillance. As a parent of a child on the Autism Spectrum, I am filled with dread. Our children are not a crisis. They are not mere data points. They should never be subjected to a government-led profiling initiative, particularly one shrouded in secrecy and executed without genuine consent. We have witnessed similar scenarios before — throughout history, in policy, and in silence. History teaches us this: a registry is not established without an intention to utilize it. 

We demand: an immediate cessation of all federal efforts to aggregate autism data without informed, written consent from individuals or their guardians;

•A comprehensive investigation into the sourcing, sharing, and storage of this data;

•Federal protections to prevent the establishment of any registry targeting individuals with disabilities without public transparency, oversight, and legal safeguards.

This issue transcends politics. It concerns rights. It concerns dignity. And it is a declaration: not our children. Not in this manner..