Written in May 2023

Part 2 here
Part 3 here

I recently posted about the Autistic Radio project, including with the work we've been doing discussing Inside Our Autistic Minds to create audio resources that other autistic people can listen to, and which can be access by policy makers and professionals working in the field of autism support and research.

We have nearly finished commenting on the first episode, which includes Murray, a non-speaking autistic man. In that episode we are introduced to some other non-speaking, or minimally verbal autistic people at a support centre, who were using, or being introduced to different ways of communication. These fall under the umbrella term of AAC – Augmentative and Alternative Communication. This is a part of the autistic experience that none of us at AR have personal experience of.

I went on a deep dive to learn about the experiences of non-speaking autistic people, and why speech is out of reach of some autistic people. Along the way I learned more about myself, which is always a bonus.

Non-speaking autistic people are often assumed to have a severe intellectual disability, indeed that is the phrase we heard in the IAOM programme. Not being able to speak out loud is often conflated with a lack of cognitive activity, but speech isn't a cognitive function, it's a motor function. The muscles of the mouth, tongue and voicebox must be co-ordinated with breathing patterns to generate sound, and it is a difficulty with co-ordinating these actions, known as apraxia, that makes speech and controlled body movements difficult or impossible for non-speaking people.

These marked motor function difficulties often get seen as a sign of an intellectual disability. If a person can't sit still and walks away from you when you're talking, it isn't because they're not listening or don't realise you're talking to them, it's more likely to be that their body doesn't allow them to stay near you and do the “things” you have to do when you're listening and understanding. Non-speaking people, when provided with a means of communication, often report this as a major challenge.

Other autistic traits and behaviours like stimming and echolalia also get interpreted as signs of intellectual disability. These behaviours are very obviously different from the norm, and neurotypical society treats people who are obviously different as faulty. Ask any wheelchair user about their experiences of being spoken to like they're children, and you'll know what I'm getting at. Non-speaking people are denied agency and autonomy and it's not because they're not competent to understand concepts and make decisions, it's because they don't speak those choices out loud. It's not fair.

To wrap up part 1, here's something to think about: can you pronounce eichhörnchen? It's German for squirrel. I'll bet that unless you're a native speaker, or have a really good accent, that it's really obvious that German isn't your first language. That same word, squirrel, was the tell-tale word for detecting enemy spies in WWII – German speakers can't get their mouths to make the “squirr” part of the word, just like native English speakers struggle to make some of the sounds in other languages. We just don't have that motor ability and training. Bear that in mind and come back for part 2 next week.