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Stop the Autism Registry Proposal — Speak Out Now!

Updated: May 13

Recently, Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. proposed a federal autism registry, triggering immediate alarm among autistic individuals, families, clinicians, and disability-rights advocates.¹ Kennedy described this project as part of a nationwide “disease registry,” mischaracterizing autism as a disease rather than a lifelong neurodevelopmental disability.² This framing perpetuates harmful cure-focused mindsets, disregarding autistic individuals' autonomy and lived experiences, focusing on eradication rather than support and acceptance. Such rhetoric revives harmful myths and further stigmatizes autistic individuals.


Why This Proposal Differs from Research Registries

Voluntary, de-identified research registries, such as SPARK at the Simons Foundation, gather anonymized data with informed consent for scientific research. Kennedy’s original proposal, however, involved a centralized, identifiable federal database of autistic individuals.¹ Historically, disabled communities have experienced harm when governments collect personal data without adequate safeguards, potentially leading to surveillance, discrimination, abuse, and barriers to services, employment, housing, and coercive medical interventions.


Clarifying Autism Science

Autism's causes are genetic and neurodevelopmental, with environmental influences—but not vaccines or toxins.³⁻⁵ A comprehensive 2014 meta-analysis involving 1.3 million children conclusively found no link between vaccines and autism.⁵ Funding debunked theories diverts resources from research autistic people deem crucial.

Research funding remains essential but must pivot toward areas identified by autistic advocates, clinicians, and federal bodies like the Interagency Autism Coordinating Committee:

  • Communication access (AAC, sign language, typing supports)

  • Co-occurring healthcare (epilepsy, gastrointestinal conditions, mental health)

  • Inclusive education and employment practices

  • Home- and community-based services to enhance autonomy

  • Lifespan-focused studies (aging, housing, self-determination).¹⁵,¹⁶


Concerning Leadership, Ableist Rhetoric & Historical Echoes

Kennedy's repeated labeling of autism as a taxpayer “burden”¹ echoes explicitly ableist ideologies historically associated with eugenics. Such rhetoric fueled infamous decisions like Buck v. Bell, which endorsed forced sterilizations to reduce taxpayer burden, later adopted by Nazi physicians.¹⁷,¹⁸

Further concern arises from Kennedy’s appointment of David Geier, previously disciplined for unethical treatments and practicing medicine without a license, to oversee vaccine-autism initiatives.⁶ Geier and his father, Mark Geier, were widely condemned for administering dangerous, discredited treatments to autistic children, including chemical castration using Lupron and aggressive chelation therapy.⁶ These interventions lacked scientific support and posed serious risks. Elevating individuals with documented ethical violations and harmful practices threatens autistic communities and erodes scientific trust.


Political Context: Why Vigilance Matters

This registry proposal arises amid broader threats to disability rights:

  • Medicaid Threats: Proposed $880 billion cuts, tightening eligibility, and imposing work requirements.⁷,⁸

  • School-based Service Risks: Medicaid funds vital K–12 supports, risking severe cuts in speech-language, occupational/physical therapy, and mental health services.⁹

  • Home- and Community-Based Services (HCBS) Risks: Over 600,000 individuals with disabilities rely on Medicaid HCBS, with extensive waitlists that would lengthen significantly under proposed cuts.⁸

  • Department of Education Reductions: Significant staff cuts in disability-focused agencies (OSERS, IES), reducing research and support capabilities.¹⁰,¹¹

  • Office for Civil Rights Backlogs: Staffing reductions despite rising complaints jeopardize timely protections for students with disabilities.¹²

  • Project 2025 Threats: Proposals include block-granting Medicaid, limiting civil-rights enforcement, and eroding diversity and inclusion mandates, negatively impacting disability access.¹³,¹⁴

  • Direct HHS Cuts: FY 2026 budget proposes reductions to the Administration for Community Living and NIH autism research.⁸


Action is Essential

On April 27, 2025, public backlash prompted HHS to retract explicit registry plans, calling it "data collection," without detailing its purpose, scope, security, oversight, or informed consent procedures.²,⁸ This ambiguity requires continued vigilance and activism.

Take Action:


References

  1. CBS News, April 22, 2025.

  2. Autistic Self Advocacy Network, April 21, 2025.

  3. CDC, 2024.

  4. National Academies Press, 2004.

  5. Taylor et al., Vaccine, 2014.

  6. Maryland Board of Physicians, May 16, 2011. Also see Chicago Tribune, April 27, 2011.

  7. Politico, April 28, 2025.

  8. Disability Scoop, April 28, 2025.

  9. Kaiser Family Foundation, 2023.

  10. Hechinger Report, March 18, 2025.

  11. Education Week, March 22, 2025.

  12. USA Today, March 11, 2025.

  13. Center for American Progress, June 7, 2024.

  14. Axios, February 26, 2025.

  15. Interagency Autism Coordinating Committee, 2023.

  16. ASAN Research Agenda, 2022.

  17. Lombardo P. Three Generations, No Imbeciles. Johns Hopkins University Press; 2008.

  18. Stern AM. Eugenic Nation. University of California Press; 2016.

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