Autism East Midlands have worked alongside Derby College for a long period, helping them to support their students in an environment that is best suited to autistic students. Peter Benyon has been instrumental in forming this relationship between Autism East Midlands and Derby College, in this piece he writes about his first experience of working with someone who had a diagnosis of autism.
I remember the first individual who I worked with who had a diagnosis of autism. For the purposes of this blog I will call him Arthur, although that is not his name.
In 2004 Arthur had wanted to enrol as a mature student on a full time performing arts course. Arthur had an interest in becoming an actor and wished to hone his skills. However, due to his inclusion needs and being an “adult” he was advised to take an adult evening class instead. As a Learning Mentor I was asked to meet with Arthur before each class each week to prepare him for the session and discuss any issues he may be having in accessing the course.
In this scenario, Arthur was meant to be in the role of the student and I was the mentor; the sage advisor who could answer his questions and ease his worries. What actually happened was that Arthur taught me more about autism and neurodiversity than anybody before or since.
Arthur’s diagnosis had lurched between high-functioning autism and Asperger’s Syndrome as his clinicians and diagnosticians argued about where the line between the two should be drawn and, in actual fact, if there was a line to be drawn at all. But he had a passion of his own to learn all that he could about his “condition”. He devoured books, scoured official documents and documented his understanding of himself. And, much to my benefit, each week when we met, he shared all of this with me.
Arthur taught me about related medical conditions, such as leaky gut syndrome. He explained what it was like to be stuck in a cinema’s toilet as doors were slammed around him, the noise causing him to stim and pace on his tiptoes, unable to exit. He shared what it was like to try and navigate a moving bus with vestibular difficulties. And we discussed what it was like to desperately want to be a part of a society structured in an largely inaccessible and incoherent way to Arthur.
When I met Arthur he had just moved into a supported living arrangement and was doing his best to understand and juggle the everyday tasks that most people take for granted. Arthur had lists and rotas, planners and schedules hidden behind cupboard and closet doors. He found the organised pieces of paper with tables and visual references reassuring, even though the tasks and activities they referred to were not. He talked to me about his key workers, about which ones took time to help him to understand and which ones had no patience and just did it for him.
I often think of Arthur with his floppy hair across his face, his long grey coat, his tattoos of scantily clad ladies (his Mum had insisted on him having a secondary tattoo for one of them so they at least had some clothes), the staccato rhythm of the monologues he shared with me, the Tesco shopping bags that he would bring his work in, and the extremely careful way in which he would open and close the large double doors in the Performing Arts department. But most of all I think about his passion to be involved in a society that up to that point had not catered for or accepted him, and that caused him significant distress on a daily basis. Of all the things he taught me, which are many and varied, it is this that has left the biggest impression.
Whenever I talk to an individual or groups about Autism and Neurodiversity I try to share a little of Arthur’s passion for understanding different perspectives or undisclosed reason for the structure of something. I try to raise the awareness that for people on the “neurotypical” side of the two way mirror, that the mirror needs to reflect and ask questions, whilst the “neurodivergent” side needs to be clear and transparent so that there are no secrets or riddles or reasons to hide.
Arthur taught me that when the conversation is open and honest, that this is when true learning can take place.
Thank you Arthur.
Pete Benyon, November 2018