Autism Answers Back

Yet Another Proposal for a National Autism Registry

AABregistry

Academia crosses another ethical line

In the wake of the Trump Administration's disastrous autism announcements, government credibility around science is already threadbare. When a scientist calls for yet another national autism registry — one in a long line of government and academic attempts to catalogue autistic people under the guise of progress — it sets off a chorus of alarms. The state promising protection while quietly building a database it swears will never be used against us is simply not believable.

In STAT News Northeastern University professor Srinivas Sridhar argues that the United States urgently needs a national patient registry for leucovorin, a folate-based drug now being fast-tracked by the FDA for autism-related use. His case sounds reasonable: if the FDA is approving a treatment without large trials a registry could track outcomes in real time. It could document which children improve, which don’t and what side effects emerge. The pitch is framed as science catching up to compassion.

But buried beneath the tone of accountability is something far more dangerous. Sridhar envisions a government-academic database that would collect standardized data from every autistic child prescribed leucovorin — including diagnosis, genotype, dosage, lab results and behavioral outcomes — all linked to electronic health records. That is not oversight. It is surveillance. It is an explicit call for structural tracking of autistic bodies under the banner of safety.

The New Surveillance under the Name of Science

Registries sound neutral. They promise transparency, evidence and trust, but they also concentrate power. When participation becomes the price of access to treatment, consent dissolves into compliance. Parents desperate for help are told their children’s data will serve the greater good while autistic children — many nonspeaking, many unable to opt out — become long-term data subjects in a living experiment. The system Sridhar describes would not just observe outcomes; it would define them, repeating the same hierarchy of observer and observed that every generation of autism research claims to have outgrown.

To call this ethical oversight is to forget the history of autism research: from eugenic screening to genomic biobanks to AI-based behavior surveillance. Each new generation promises safeguards. Each ends up reinforcing the same hierarchy — the observer over the observed, the researcher over the researched. A registry is not a correction to that pattern. It is its latest form.

The Illusion of Neutrality

Sridhar insists the registry would be a “neutral, data-driven source of truth.” But the government, the healthcare system and academia have never been neutral when the subject is autism. A registry built by government agencies and academic institutions will always privilege what those systems consider meaningful: standardized metrics, validated scales and behavioral norms anchored in deficit logic. Improvement will be measured against neurotypical baselines. Stability will be coded as success. Difference will still be treated as disorder.

The rhetoric of neutrality erases the question of power. Who defines benefit? Who interprets data? Who decides what counts as harm? Without autistic leadership the answers are already decided. The registry will not illuminate autistic experience. It will quantify it for administrative convenience.

Transparency without Trust

The proposal claims a registry would rebuild trust by making outcomes public. But transparency without shared authority is not trust. It is exposure. Families will be told their participation ensures accountability yet they will have no control over how their data is analyzed or who profits from it. Researchers will publish findings. Policymakers will set coverage decisions. Pharmaceutical companies will cite registry data to justify expansion. The only people not empowered by this “transparency” are the autistic people whose lives make the numbers possible.

This is not a hypothetical risk. Similar databases already exist in other medical fields. They begin as oversight tools and evolve into infrastructures of control. They dictate care standards, limit clinical discretion and normalize surveillance as compassion. Once built they are almost impossible to dismantle.

The Moral Pressure of Participation

Sridhar imagines a registry fueled by voluntary data sharing but the social reality will be coercive. Parents who decline may fear losing access to treatment or being labeled uncooperative. Clinicians may be reimbursed for compliance. Autistic people will not be asked if they consent to long-term monitoring of their medical histories. They will simply inherit the system built around them.

Participation will not feel like choice. It will feel like duty. That is the quiet violence of institutional surveillance: no one forces you to obey yet opting out feels impossible.

The Language of Care as Camouflage

The article’s framing — that science evolves with every patient — turns patients into proof. It recasts experimentation as evolution. It pretends that faster approval plus better tracking equals progress. But progress toward what? Whose future is being optimized when the structure itself erases autistic agency?

This is how medical systems expand their reach without ever calling it control. They rename tracking as transparency, oversight as safety and data extraction as participation. Families are thanked for their contributions even as their autonomy is absorbed into the dataset. That is not partnership. That is governance through gratitude.

What Real Accountability Should Look Like

After tracing how control usually hides behind the guise of compassion, the question becomes what true responsibility might look like.

Real accountability must also challenge the assumption that risk management requires constant monitoring. Safety does not have to mean surveillance. Systems can safeguard without collecting. The goal is to build trust through reciprocity, transparency in decision-making and reparative action — not by watching and recording people. Accountability should prove that care and consent can coexist without the machinery of control.

Real accountability begins with dismantling the conditions that make surveillance feel necessary. Instead of centralizing more data, systems should decentralize power. That means:

Accountability means protecting autistic autonomy, not quantifying it. It is built through respect, disclosure and repair — not through endless data collection.

Why This Matters Now

The FDA’s fast-tracking of leucovorin sets a precedent. When a drug for autism is approved before large trials, post-market data becomes the new trial. That means the experiment has already left the lab. The question is who carries the risk. In Sridhar’s vision it is autistic families. In ours that is unacceptable.

A national patient registry for autism is not responsible medicine. It is surveillance disguised as science. And if the history of autism research teaches anything it is that data infrastructures built without autistic consent will always serve the wrong story.

What looks like transparency from above feels like tracking from below. We deserve better than that.

The only registry autism needs is the one we’re already keeping — a record of who keeps proposing that autistic people be catalogued, monitored or managed. AAB’s ledger isn’t a list of patients. It’s a list of patterns: the recurring fantasy that safety means surrender, that oversight requires ownership, that data can substitute for consent.

Note: The discussion of surveillance and coercion reflects AAB's analysis of foreseeable impacts of the op-ed’s proposed registry design, not a statement about the author’s intent.