Author: Ellis Graham Byrne, a Psychology PhD student supervised by ALL members Prof Fintan Sheeran School of Nursing and Dr Laura Coffey, Department of Psychology
When I first began my PhD, I was, like many others before me, overwhelmed with the sheer amount of options and directions I could take my studies in. Being autistic myself, I knew I wanted to do something around autism and found myself with a plethora of options: the impact of SSRI’s on those on the spectrum or perhaps studying the sensory aspects of being autistic and the impact they have on everyday life. I noticed, quickly, that there seemed to be a preoccupation with the negative aspects which, while necessary and valid work, didn’t sit right with me. It wasn’t until I thought of my own life, and the unique journey my diagnosis brought me on, that I realized that there was so much joy in my life, not despite my autism but because of it. So, my work on autistic joy began and I began to remember things, things I would like to share with you, dear reader.
For me, the best part of getting a new video game wasn’t the first time playing: it was the moment when I cracked open the case, the comforting, familiar smell of plasticine in the air, and I reached for not the disc but the manual. Inside was everything I wanted to know : what the story I would soon be embroiled in was about, instructions on how to use the controls and a clear step-by-step guide on how to play. I’ve revealed my age in that confession, as the days of hard copy video games being the norm have long since passed, but the love for guidelines and rules has never left me. Not rules in an authoritarian way; I don’t desire any hobbling of liberties, mine or others. No, when I say rules, I mean “rules of engagement”. It was clear cut when it came to games: master the mechanics, beat the bosses, win the game. This made sense to me: it was all neatly laid out with the rules that I could hold to. The satisfaction of beating an especially arduous boss battle (I have never forgotten Ornstein & Smough from Dark Souls or Radhan from Elden Ring) or completing a satisfying story fair and square is a feeling I adore. If only this satisfaction was found in my social life, particularly when I was younger and had been diagnosed as autistic.
The effect of my diagnosis was as illuminating as it was dichotomous: while it explained some of my difficulties and what my family lovingly referred to as “Ellis-isms”, it also widened the divide I had already felt from my peers as a teenager. For me, it was like everyone else had cracked open the case and read the manual, had seen the diagrams and guides, the rules and expectations. Me? I had never been given that luxury and yet was still asked to play the game. Imagine handing a non-gamer your preferred console controller and asking her to play. Dear reader, I was that befuddled non-gamer. Everyone else seemed to just be able to “click” with each other, a skill I seemingly lacked for the vast majority of people I came across. Nothing made sense to me: why did we have to have polite conversations before we discussed what we actually wanted to talk about, the preamble seemed unnecessary? Why did people seem perturbed at my encyclopedic knowledge of things, when I was willingly sharing with them the things I was passionate about? None of socializing made sense, at least with many people I came across. There were, as always, exceptions. Chief among them was my grandmother. My Nana was as boisterous as she was bohemian: formidably tall, perpetually awash with the smoke of John Player Blue and notoriously sharp tongued, it was hard to not strive for her approval. I, for whatever reason, had seemingly slipped past her defenses and resided in such high esteem I was always referred to as “her extra shadow”, the joke being people would look behind her and find me waiting. Looking back, I realize now just how much she influenced me, especially socially. Seeing as I lacked the inherent guidelines my neurotypical peers had, I concluded that I needed to devise my own: and who better to emulate than my Nana? The main reason being she was funny. Untold times I, even as a child, appreciated her wit and dry sense of humor. A favorite joke of hers was when she spoke to a group of people, she waited until one departed and came back before quipping, in that painfully endearing tilt of any older Dublin woman, “Well, they’re back now, say it to their face.” Cruel? Yes. Unnecessary? Totally. Hilarious? Objectively. Her humor didn’t leave her even as she was sick, which in my eyes made her all the more admirable. After her first round of chemo, she shaved her head, which was a shame as she was adamant she would be the one to bring back the Beehive haircut (she didn’t). When my sister saw our Nana, now frail and bony and bald, she burst into tears. Nana, not to be pitied, instantly quipped, “Oh, that does bloody wonders for my confidence!”
So, I copied her. I meticulously studied the pattern of her speech, how her voice went high on some parts to emphasize the joke and low on the others to create tensions. I learned the power of a kind word, the cut of a cruel one and how thin the line between funny and mean is. Even though I lost her nearly ten years ago to cancer, to this day I will parrot a joke of hers and hear her laugh in my head. I think for many autistic people, this is not a unique experience. While my grandmother was one in a million (and for that, we can all breathe a sigh of relief the one of her is gone) , I think many autistic people find their manual in other ways. Some find it from their favorite shows or books, some like me from a loved one they hope to emulate but regardless: the hard-working nature of autistic people to never give up demonstrates our desire to be like anyone else. To be accepted, to be loved. So often, autism is discussed like it’s the goings on of some far-off distant land: real in theory but lost in practice. We understand this concept in other practices: that for some, finding a €50 note is a Godsend and others, a convenience. Why don’t we do the same with autism? If we did, I believe we could appreciate each other more. If people stopped and listened to the complex, well– developed systems autistic people have cultivated to be social in a world constantly telling them they don’t want to be social or can’t, I think we would all value each other that little bit more. As twee as it sounds, that is what I hope for my research to achieve, that the moments of happiness and joy experienced by autistic people are viewed as because of their autism, not despite it. That their interests aren’t inherently viewed as “odd” or “childish”, not at least while we are comfortable accepting grown man painting their face and screaming at men in shorts on football fields. I hope, even in a small way, my research allows us to view autistic people as people first, and disabled second.
More than anything though, I hope that somewhere, sometimes my Nana hears me and laughs.
