Why Autistic Voices Must Be Central, Not Consultative

Nothing About Us Without Us

There is a violence that happens quietly, in committee rooms and policy documents, long before it ever reaches an Autistic person's life; the violence of being decided about. Having one's education, healthcare, and personhood, shaped by people who have never had to live inside an Autistic bodymind. Those who have not thought to ask those who do.

The Problem With "For Us"

Autism research, service design, and policy have for decades operated on a simple, unexamined assumption; that Autistic people are the objects of study and intervention rather than the authors of their own lives. Non-autistic professionals have set the goals (eye contact, compliance, indistinguishability from peers), measured the outcomes, and declared success or failure, all without meaningfully asking Autistic people what a good life would actually look like for them.

Not a neutral gap in the evidence base; what researchers and activists have named as a form of epistemic injustice; Autistic people are treated as unreliable narrators of their own experience (see Yergeau's “demi-rhetoricity”), while non-Autistic professionals are treated as the default authority on what Autism is. The body of knowledge is built almost entirely from the outside looking in.