Writing by

Tania Melnyczuk

Preventing, treating and managing dementia
Preventing, treating and managing dementia

hen my father got dementia, the incompetent psychiatrist (a dementia specialist!) didn't tell us about the latest research. He probably didn't even read it. Later, a neurologist lambasted this psychiatrist for his inappropriate treatment of my...

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Reframing “severe” autism

Earlier this week, 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.

See also:

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 support the American civil rights organisation Communication First, and collaborated with some of 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 affiliated with Spelling to Communicate South Africa, NPC (S2C SA) trained by the International Association for Spelling as Communication (I-ASC). While there are also other approaches which some nonspeakers find helpful, I-ASC has a strong human rights focus, and has an international youth advocacy programme in which non-speakers themselves provide the direction. Therapists like Vazuvamuani Muinjo training to become S2C Practitioners 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!

Zekwande Mathenjwa, one of the nonspeaking hosts of SpellX 2020.

Several nonspeaking South African children 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. SpellX 2020, an international online event held earlier this month by I-ASC, incorporated presentations by seven nonspeaking South Africans, including two nonspeaking South African co-presenters.

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. Donations to S2C SA helps fund therapy for nonspeakers whose caregivers can’t afford it. I believe that ultimately such therapy should be free to anyone who needs it.

To learn more of what nonspeaking autistic people say, check out my ever-growing Twitter thread where I’ve shared the words of approximately 70 nonspeaking autistic people.