Written in July 2022
Part of the background research for my career change was to do a few courses on the subject of understanding or introducing autism to see what information is deemed useful, how it's presented, and what might be missing. I did six modules provided by The National Autistic Society, aimed at non-medical helpers, which were really well designed and interesting. They used the right language (i.e. the language the autistic community prefers) and covered a lot of aspects that people working with autistic individuals would need to know, especially around sensory difficulties and workable support – the idea of energy accounting was a particularly good strategy (one which it turns out I was already using without a name).
I also did the OU Understanding Autism course, which was aimed at people working with autistic individuals but which seemed to have more of a slant towards diagnosis and interventions at an early age. There was more information on the diagnostic criteria, which I personally found interesting, as well as discussion of the challenges facing autistic people and their families in other parts of the world.
I knew that a diagnosis may not be accessible in all countries, and that stigma and funding probably contribute to this in a big way, but I was very interested to learn about the cultural differences that mean autism may not be picked up on in certain cultures; in some places typically autistic behaviours are considered to be a cultural norm. This insight was fascinating and gave me a new angle on the challenges that autistic people face outside the UK/EU and US paradigm in which much of the autism awareness raising and research is carried out.
What I found difficult to accept in the OU course was the fact that I was not represented. I am what would be considered “high functioning” (why is this term problematic?) and I didn't feel that I actually existed in the context of this course. I may currently live with my mum, but I have lived independently for many years, so to hear that autistic adults either live in residential/supported housing, or with their parents (and that when their parents can no longer have them at home they access supported or residential housing provision) was a bit of a shock.
I know that the course was written as an introduction to the topic and aimed at people who will be working with or supporting autistic people with higher support needs, or more complex medical needs (as well as working with their families), but these are the same people who might end up working with, or supporting an autistic adult like me. The issue as I describe it is: I can look you in the eye and tell you I'm autistic and tell you what my struggles are, but because I can look you in the eye you can't believe it.
Would these people understand my autism (and me) given that the presentation is quite different in me compared to in someone who does need residential support, or would they downplay my needs? Would they fall into the trap of thinking that I am just being difficult? Would they expect more from me than I can give? It is a problem I have experienced before, and will continue to experience. I worry that under-representation of autistic adults with lower support needs (or support needs in a two or three areas instead of several) will become a glass ceiling to accessing support where a support gap already exists.
The positive to come from this was a renewed resolve to keep speaking up, both for myself and the wider autistic community. We need more awareness of the spectral nature of autism and full acceptance of the narratives and insights that autistic people can bring. As a verbal, occasionally verbose autistic person who is able to relate the autistic experience in a way that non-autistic people can understand it's important that I keep speaking up and advocating for the whole community, me included.
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