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 nev...