“Kids With Severe Autism Often Overlooked In Research” reads the headline of an article which appeared today in a popular disability news site.

Okay. That’s bad.

Let me tell you what else is bad: Non-speaking autistic people with one-to-one support needs are often overlooked as people who can provide valuable input for the direction of research. At the Autistic Health Seminar 2018 we had two non-speaking contributors, and the message they chose to give to the healthcare professionals was not what any of us expected, even me. Non-speakers are writing a lot about what they want ‘autism experts’ to know.

Who in the palaces of academic power is actually listening? I know of a handful of people. In my own country, South Africa, I know none.

Autism researchers on the whole are not asking non-speakers enough of what they think. In fact, most researchers and research funders aren’t asking them anything at all. They’re certainly not asking many of them what to research, as required by the CRPD. They often seem to forget that many autistic adults (both speaking and non-speaking) who are talking about autism now were once autistic children deemed ‘severe’.