Counting Without Care: The Dangers of a National Autism Registry

Imagine a parent hesitating before agreeing to an autism diagnosis for their child.  Not because they doubt the truth of it, but because they fear what being on the list might mean. Now imagine that fear becoming widespread, shifting clinical practices and reshaping statistics; not because autism is disappearing, but because honesty is becoming dangerous.

This is the ethical and epistemological tangle we face if a national autism registry becomes reality.

The Promise of a Registry

Let’s begin in good faith. On paper, a centralized autism registry could offer immense benefits:

• Accurate data could support better resource allocation in schools, clinics, and workplaces.
• Researchers could access large-scale data sets, leading to deeper understanding and improved therapies.
• Policy-makers might craft smarter laws rooted in real demographic data.

In short, the hope is that if we count people well, we’ll care for them better.

But counting is never neutral.

The Chilling Effect on Diagnosis

When data is tied to power—especially state power—people behave differently. Doctors might hesitate to formally diagnose patients, wary of funneling them into a system they don’t trust. Parents may avoid evaluation for fear of stigma or bureaucratic consequences. Autistic adults might resist being added to a list that could follow them across institutions.

This creates a feedback loop: fewer diagnoses, lower reported prevalence, and an illusion of "progress." It’s not hard to imagine political leaders citing a drop in autism rates as evidence of successful intervention, when in fact the numbers have been skewed by fear and avoidance.

This isn’t public health. It’s statistical gaslighting.

Historical Echoes, Present Risks

History offers cautionary tales. Eugenics-era programs in the early 20th century used registries to identify and sterilize the "unfit." HIV registries, though now more protective, once carried deep stigma. Ethnic and immigrant databases have been misused for surveillance, detention, and deportation.

Registries are not inherently evil, but they are tools. And tools in the wrong hands do damage.

What Do We Think We Know?

There’s also the epistemological question: what does a registry actually tell us?

Who defines autism, and according to whose criteria? Are we measuring difference, disorder, or deviation from a social norm? And does listing someone on a government form truly help us understand their mind, their needs, or their experience?

Our society tends to confuse data with wisdom. We assume that counting something gives us control over it, or insight into it. But human complexity resists quantification, especially when that complexity is neurological, developmental, and lived in community.

Power, Ethics, and Human Dignity

Any registry must answer some hard ethical questions:

• Who has access to this data?
• Who can consent, and how is that consent preserved?
• Can people opt out? Can they be removed?

Catholic Social Teaching and the Jesuit tradition offer relevant guidance here. The principle of human dignity demands that no person be reduced to a case number. The principle of subsidiarity urges that decisions be made as close as possible to those affected. Neither principle is compatible with a top-down system of tracking neurodivergent citizens without their full and informed participation.

Diagnosed, Not Defined

There is a difference between being diagnosed and being defined.

Autism is not a problem to be solved by data, nor are autistic people a population to be managed through centralized control. The risk of a national registry is not only in what it counts, but in what it fails to see.

It may see numbers. But it may miss people.

Let’s not build systems that forget the difference.