Written in May 2023
I've been on a deep dive on the topic of non-speaking people, so I'm just coming up, metaphorically speaking, for air and to do a little brain dump of what I've learned so far. Mostly what I've learned about the non-speaking experience, what helps facilitate communication, the impact of intervention on the individual and then what I've learned about myself.
In the previous part, I asked you to think about the motor issues native English speakers have in pronouncing sounds in other languages, and how speakers of other languages struggle to pronounce some of the sounds in ours. Does being unable to make certain sounds equate to intellectual disability? Of course not.
Here's another something to think about: when you think of Professor Stephen Hawking, do you think of him as a non-speaking person? The reality is that he was non-speaking for the majority of his life. This was due to the motor neurone disease he lived with, but it is important to remember that he could not use his own voice, nor rely on speech to communicate. Not having access to speech doesn't mean that someone has nothing to say.
Unfortunately this was the prevailing attitude for decades, that non-speakers were intellectually disabled. As a result, they weren't given access to information or to communication methods and were effectively isolated from even their family. The difference in quality of life when a non-speaker is given something meaningful, like a letter board allowing them to spell out the words they can't say is remarkable. For some people this leads to a greater control over their motor skills and even the ability to vocalise.
The issue of presumed incompetence still stands in the way of facilitating non-speakers to use spell-to-communicate technologies, because it can take a while for people to get used to the system and to gain control of their motor skills more effectively. If you listen to the testimonies of any non-speaking autistic person who's been given the means to communicate then you'll hear it first hand. I can recommend seeking out first-person experiences to see just how life changing it is to be able to interact more fully with the world and the people around you.
This deep dive has helped me understand myself and my shutdowns more fully. When I have a bad shutdown, or I am in a post-meltdown state, my walking takes a couple of days to fully recover. I am able to walk, but only slowly and with short steps. I also often lose speech during shutdowns and meltdowns, and in the recovery period.
Both of these are motor functions and seem to be switched off by my brain when it is in crisis mode, in order to preserve processing power for more important functions like breathing, and cognition (although sometimes my cognition is impaired to some extent). When I am able to access movement and speech again, it is in “safe mode”, so I don't have access to the full functionality.
Understanding more about the role of motor function in speaking, and in walking, helps validate my self-identification of dyspraxia, and makes those times when I am situationally mute less scary because I know what is happening is only temporary for me.
In the last part I will be looking at how the Autistic Radio project can collaborate with the non-speaking community.
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