The Autistic Women & Nonbinary Network (AWN) and the Autistic People of Color Fund (The Fund) strongly condemn the involuntary use of autistic people’s health records to “conduct research” or for any other reason, on Autism Spectrum Disorder or any other health condition.

AWN is a national nonprofit that supports autistic women, girls, transfeminine and transmasculine nonbinary people, and trans people of all genders. The Fund promotes the advancement, inclusion, and integration of autistic people of color through microgrants and systems change advocacy. Together, AWN and the Fund engage in policy research and community-led advocacy to advance more just outcomes for disabled people that affirm our humanity and respect our dignity.  

On May 7, 2025, Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. announced a plan to “discover the root causes of autism” by using claims data from the Centers for Medicare & Medicaid Services (CMS). This means that CMS will hand over the insurance records of anyone with an autism diagnosis who has received care through Medicaid, Medicare, or both. Despite claims of “full transparency and honesty”, we do not know exactly what data will be shared, how it will be secured, if it will be de-identified, or who will be given access to it.

The disability community has a long and troubled history with data collected for the purpose of eliminating us. In the late 19th century, biostatisticians gathered data about our physical bodies, from head shape to nose length, and used that data to declare racial differences and degeneracy. In the 20th century, intelligence tests were added in order to “statistically” declare who was less worthy. These eugenic concepts have led to disenfranchisement, the loss of bodily autonomy, institutionalization, and genocide. The increased stigma and eugenicist rhetoric toward autistic people driven by Secretary Kennedy is unacceptable and factually incorrect.

We will not abide by this.

We demand actual transparency from HHS and CMS. We demand to know what data has already been collected and from where. We demand autistic-led engagement and a commitment to ongoing HIPAA-compliant data protection. We demand that this eugenicist project is immediately abandoned.

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¹ https://www.hhs.gov/press-room/nih-cms-partner-to-research-root-causes-of-autism.html

² Id.

³ van Toorn, G., & Soldatić, K. (2024). Disablism, racism and the spectre of eugenics in digital welfare. Journal of Sociology, 60(3), 523-539. https://doi.org/10.1177/14407833241244828 (Original work published 2024)

⁴ Id.