Recently, a proposal surfaced in Utah to establish a state autism registry. While the intentions behind such a registry may be beneficial for public health or research, we cannot ignore the fact that it fundamentally infringes upon the privacy rights of children and their families. An autism registry involves collecting personally identifiable information about children diagnosed with autism and storing it in a database. This could lead to potential future misuse or unauthorized access to sensitive information, especially when we see how registries have impacted minority and marginalized people in the past and even more recently as seen with racial and other minorities have been  experiencing drastic situations as a result of similar invasions of privacy, the same will be true if the privacy of autistic individuals is not protected. 

In the USA, the Health Insurance Portability and Accountability Act (HIPAA) provides specific safeguards to protect the privacy of medical records and other personal health information. The proposed state autism registry directly clashes with the principles upheld by HIPAA. It is crucial to note that a diagnosis of autism doesn't necessitate the relinquishing of one's privacy.

Additionally, according to a 2012 study published by the National Center for Biotechnology Information (NCBI), at least 1 in 59 children has been identified with autism spectrum disorder (ASD), signifying a profound societal impact. More recently, even the CDC has recognized that 1in 31 childrem have been identified as having ASD as of early this year in 2025. Each of these children, their families and Autistic adults deserve to have their privacy rights secured.

Therefore, we urge the authorities in Utah to reconsider this proposition and find alternative, non-invasive ways of supporting the autism community. Autism is not a disease that needs to be eradicated like cancer, it is a brain development and structure difference that requires understanding, accomidation, and acceptance.

 Sign the petition today and join us in standing up for the privacy of all individuals.