They Got It So Wrong: Why Autistic-Led Research is Essential

Sneak Peek: How the Cognitive Ecology Model Solves This Problem

I spent most of my life feeling like a walking contradiction. Highly intelligent, yet struggling with things others found easy. Socially aware, yet constantly misunderstood. Capable of deep, abstract thinking, yet exhausted by the daily grind.

For years, I didn’t have the words for what I was experiencing. Then came my autism diagnosis—and suddenly, there was language for what I had always known: my brain worked differently.

But here’s the thing. The more I learned about how autism had been studied, the more I realized something profoundly unsettling. The research wasn’t designed to help autistic people understand themselves. It was designed to explain us to non-autistic people—often in the most pathologizing, deficit-based ways possible.

The science had gotten it wrong. And in getting it wrong, it shaped how the world sees us, how we see ourselves, and what support we do (or don’t) receive.

This realization led me to develop the Cognitive Ecology Model (CEM)—a new way of understanding au…