U.S. autism data project sparks uproar over ethics, privacy and intent

Changing diagnosis, rising numbers, and what “autism” means

• Several comments stress that diagnostic criteria have changed dramatically over decades (DSM revisions, Asperger’s folded in, autism + ADHD now allowed, “childhood schizophrenia” reclassified), so time‑series comparisons are “apples to oranges.”
• Some argue much of the apparent “epidemic” is reclassification (from generic “mental disability” or “special needs”) and better access to diagnosis, not a true surge in incidence.
• Others push back that criteria have broadened substantially and that we still don’t really know whether underlying incidence is stable or rising.
• There’s tension between viewing autism as a disease to “prevent/cure” versus a neurodivergence requiring support and accommodations.

RFK Jr., vaccines, and trust in intent

• Multiple commenters working in or near autism research say the vaccine–autism link is unsupported and label RFK Jr.’s claims as junk science, grift, or dangerous ideology.
• One small but vocal subgroup defends him as giving voice to desperate parents of severely affected children, arguing mainstream medicine has left an “information vacuum.”
• Others note his history of anti‑vaccine activism and inflammatory rhetoric (e.g., on “unproductive” autistic people) and see the registry as a vehicle to attack vaccines, not to help autistic people.

Ethics, privacy, and Nazi/eugenics parallels

• A large fraction of the thread draws explicit parallels to early Nazi disability registries and Aktion T4: first data collection “for care,” then cost‑based framing, then killing.
• Quotes about autistic people “never paying taxes” or being a burden trigger strong fears of economic‑productivity–based eugenics.
• Many argue that under an administration already undermining habeas corpus, targeting judges and journalists, any centralized list of “undesirables” is inherently threatening, regardless of stated intent.

Autism community and parent perspectives

• Profound vs “high‑functioning” autism is a core fault line:
  • Some parents of profoundly disabled children describe extreme burdens (constant supervision, family breakdown, violence, flight risk) and feel ignored or patronized by advocates focused on milder autism.
  • Autistic adults and allies counter that “high/low functioning” is stigmatizing, fluctuates over time, and is often weaponized to silence those able to speak for themselves.
• There is deep disagreement over whether describing severe cases in bleak, burden‑centric language is “telling the truth” or dehumanizing and feeding eugenic narratives.

Data for research vs surveillance and abuse

• Some technologists say properly anonymized, opt‑in health registries can greatly aid research, citing European cancer/COVID registries; others respond that strong re‑identification attacks and U.S. government overreach make “safe” centralization unrealistic.
• Cloud and big‑tech health datasets are viewed with suspicion: certification and HIPAA are seen as little protection once the state or law enforcement demands access.
• A minority argues that without rigorous population data, environmental or genetic causes cannot be meaningfully studied, but even they often insist current HHS leadership is unfit to run such a project.

Chilling effects, labeling, and “social credit”

• Many fear the registry will deter people—especially “high‑support‑needs” adults and high‑functioning professionals—from seeking diagnosis or services, forcing a trade‑off between help and state targeting.
• Some recommend avoiding formal psychiatric diagnoses unless absolutely necessary, worrying about future misuse (employment, benefits, or worse).
• One thread frames this as part of a broader, informal U.S. “social credit” system, where disabled or neurodivergent people already start with low status and are first in line when austerity or authoritarianism bite.