STUART Neilson, who has an exhibition opening at St Peter’s in Cork city, never goes to pubs and has only ever ordered coffee in a cafe or hotel three times in his life.
An academic statistician at UCC, the 55-year- old was diagnosed with Asperger’s syndrome at the age of 45. The reason he avoids ordering coffee is “because of the things that could go wrong”. This anxiety is part of his condition.
Stuart lectures and writes about the autistic spectrum as a health statistician, drawing from his personal perspective. His exhibition, at St Peter’s on North Main Street, from February 7 to 27, is called Creating Autism and consists of images and words. It explores the processes that shape autistic identity and the portrayal of autism in our shared language, media and public spaces.
The images include newspaper coverage, medical textbooks, autistic autobiography and film as raw material for analysis, along with video from around Cork city. There will also be a number of talks at St Peter about aspects of the autistic spectrum.
Stuart, who is married and has two children, one of whom has been diagnosed as being on the autistic spectrum, describes the visual pieces in his exhibition as ‘statistical’.
“As soon as people hear the word ‘statistic’, they switch off. I’m trying to make the ideas more sensory, so that people can see and feel the ideas being represented.”
The way autism is written and talked about over the decades has changed dramatically.
Stuart said: “The label continues to evolve with scientific enquiry and professional experience. As a result, when two different people say ‘autism’, they are probably saying two different things.
“The autism of 2019 is not the same set of phenomena or perceptions as the autism of 1952 (when it was first described in the Diagnostic and Statistical Manual of Mental Disorders).”
Back then, the term ‘schizophrenia’ was used to describe autism. Now, it is seen as a social communication disorder.
Stuart says that “autism, being bound to perceptions, portrayals, individuals and events, means different things in different places. The presence of genetic research, community support, special educational resources, personal tragedy or charismatic autistic speakers, all colour the reporting and representation of autism at specific times and in specific places.
“Self-image and self-worth are also coloured by public representations of others who share the same label. The attitudes towards people labelled with autism are shaped by public representation.”
Choosing how to talk about autism and autistic people has a profound impact on how interventions for autism operate and how the condition is perceived and integrated within society, adds Stuart.
Asked why he went for a diagnosis, he explains that he “had been in and out of hospital with depression. I had very severe depression because of isolation and exclusion. I was seeing a psychiatrist. I had eight years of psychiatric treatment and I wasn’t getting any better.”
It was decided that it would be a good idea to look at alternative diagnoses.
When the diagnosis was made, Stuart says it was a revelation. He realised that his feelings of isolation and exclusion emanated from himself “and were not something people were doing to me”.
The term ‘sensory overload’ registered with Stuart, who can be hugely distracted by noises and sights.
“I’d be looking around to see who was looking at me in a strange way and I’d wonder if I was behaving badly. I was becoming really anxious about how I presented myself.
“But it wasn’t that at all. It’s just that I’m uncomfortable in public places. I was on medication for depression. Now I occasionally take medication for anxiety.”
Stuart’s diagnosis helped him to make sense of his past.
“At school, I had immense problems relating to authority and teachers. I was always in trouble but there was no Asperger’s syndrome then. I was put in remedial education when I was about 12 or 13, at school in England. I was more trouble there than in mainstream education. I think there were more opportunities to be devilsome.”
Looking back, Stuart says he didn’t enjoy his childhood.
“I didn’t like school and I was a very slow developer. My worst subject in school was maths. It’s now my highest qualification because I learned to love the subject. But the teaching of maths at school doesn’t make you love the subject. It’s like the teaching of Irish. Most people end up hating it because it’s beaten into them.”
Enclosed spaces, such as shopping malls, make Stuart “panicky”.
He adds: “I don’t think you can medicate effectively for my condition. Some of the behavioural issues can be toned down with medication but you have to look at what you’re taking away along with the behaviour you’re trying to treat. There’s always collateral damage.”
What are the positive qualities associated with being on the autistic spectrum?
“I think autism is about being more connected to the sensory experience than to language. Most people develop words and symbols to think about things. They stop seeing the reality of what is there. Instead of seeing the chair that’s in front of them, they see the word ‘chair’. Autistic people are seeing all of it which can be an immensely valuable thing. But it’s also distracting.”
People on the autistic spectrum are often said to be good at maths.
“I think we can also be good at music and art and other things that are being lost by seeing autism as a label, before seeing the person.”
Stuart’s exhibition aims to raise awareness.
“I hope people will think about the language they use when they’re talking about autism. In the exhibition, I give explanations to go with the pictures.”
Emphasising the wide variety of people who are diagnosed as being on the autistic spectrum, Stuart believes “everybody has traits of it.”
Many people will identify with Stuart’s stress when going through airport security.
“It’s such an intense experience, learning how to interact with a complete stranger in a very intimate way. In the queues, you can see people coming close to meltdown. You’re expected to take in orders and understand all the rules in the five minutes or so that you’re in the queue.”
Stuart says that every year, there are more and more books that feature autism. He cites County Cork-based writer, Sara Baume’s novel, Spill, Simmer, Falter, Wither.
“It’s not about autism but it’s very much like the experience of isolation that I’ve had in my life. It’s an absolutely beautiful lyrical book centring around a man in his fifties who was kept out of school because his father was ashamed of having a child like him. The boy was educated by a neighbour.
“When his father passes away, he is adrift. Set in Whitegate, the man only has his dog for company as well as the birds and the flowers. He’s in love with nature. It’s an imaginative book that explores social isolation.”
At the opening of Stuart’s exhibition, on Thursday, February 7, there will be a panel discussion facilitated by Tom Ryan (counsellor), featuring Megan Goodale (occupational therapy manager at CUH), Gill Harold (applied social sciences, UCC), Katerina Karanika (autism consultant), Danielle Sheehy (artist) and Stuart Neilson. There will be further talks on February 9 and February 16. Tickets are free and can be booked through eventbrite.ie/e/creating-autism.
Also see page: http://stuartneilson.com/creatingautism/ for more