REVISED 3 MAY 2023
In November 2018, nonspeaking autistic activist Damon Kirsebom published a video which shows, in a nutshell, what “severe autism” means for many “severely autistic” people. It’s short, well-structured and to the point, and it deals with issues reported by many autistic people who have been labeled ‘severe’, ‘Level 3’ and those who received the old ‘Kanner’s Autism’ diagnosis. I highly recommend this video as a primer to anyone working in the autism industry, as well as family members, policymakers and autistic people who speak.
Some autistic AAC users who have watched the video said that they relate to everything that Damon shared, while one or two said that in addition to Damon’s challenges they also have a mild intellectual disability.
To learn more about autistic apraxia (sometimes called the ‘body-mind disconnect’) see:
The difference is that Damon and the writers of the articles linked above received therapy to work around the apraxia and regulation challenges. That’s why they are able to spell out their thoughts, while many nonspeakers worldwide remain trapped in a system that provides no access to nuanced communication, and sometimes even subjects them to inappropriate treatment for the problem as their behaviour is misinterpreted.
A few words from my perspective as an activist
Communication is a human right. As an autistic activist for the communication rights of nonspeaking autists, I have often worked with the American civil rights organisation Communication First and collaborated with its the founders before the organisation was established.
From 2015 onwards, I worked with a handful of others to help bring therapy to South Africa to provide what nonspeakers say is most helpful to them. Today it is possible to achieve the kind of communication that Damon uses via therapists trained in a number of methods which use a progression from stencil boards to a laminated letterboard and then to a keyboard. Therapists first train gross motor, then fine motor skills. The goal, where possible, is independent typing and improved self-help in daily tasks. Some of the organisations offering therapy and therapist training also have advocacy organisations in which the users of these AAC methods (sometimes called spellers) provide the direction. Trained therapists like Vazuvamuani Muinjo from Namibia have commented that they have never before had such training which includes a direct link to what actual disabled people say they need. (According to the CRPD, this should be normal!)
Several nonspeaking South African children and young adults now share their experiences online. These include Akha Khumalo, Nicolaas Paulsen and Zekwande Mathenjwa. I maintain contact with nonspeakers in South Africa and consult them when preparing for autism workshops for professionals via the Autistic Strategies Network. International online events are held regularly, featuring presentations and creative work by nonspeakers. Nonspeaking South Africans have co-hosted some of these events.
One of my goals as an activist is to ensure that all nonspeaking autistic people in Africa have access to a nuanced means of communication, using methods recommended by actual nonspeaking people. I work with other autistic activists in Africa and around the world to achieve this, and particularly with the Zekwande Foundation, founded by Africa’s only full-time nonspeaking autistic activist. Donations help fund therapy for nonspeakers whose caregivers can’t afford it. I believe that ultimately such therapy should be free to anyone who needs it.
Resources
To learn more of what nonspeaking autistic people say, check out my Twitter thread where I’ve shared the words of approximately a hundred nonspeaking autistic people, and the archive of nonspeakers’ writing at the Neuroclastic site. Neuroclastic also provides many resources for parents, educators, doctors and therapists, including a library of infographics on topics such as disinhibition, which affects many nonspeakers greatly. The LISTEN to Us Toolkit from Communication First provides a departure point for workshops about so-called ‘severe autism’.