Living a life less ordinary with Asperger's

Loud noises and crowds can cause sensory overload and anxiety for lecturer Stuart Neilson, who has Asperger Syndrome, he tells Colette Sheridan

FOR Cork-based Stuart Neilson, restaurants and pubs are mostly out of bounds and he finds large shopping malls particularly difficult.

Such places result in sensory overload and anxiety for Neilson who was diagnosed with Asperger syndrome five years ago at the age of 46. Neilson, a mathematician, works at UCC’s adult continuing education department, lecturing on the new course in mental health and autism spectrum studies. It’s part of a disability studies course at the university which was introduced last September. There are about 130 students taking part in the course. As well as the students on campus, others take the course in Bantry and Limerick.

A married father of two, Neilson’s diagnosis came relatively late in life. He was initially diagnosed with depression and has been in psychiatric institutions on five occasions. The diagnosis of Asperger’s syndrome was a relief for him. It explained a lot.

Asperger’s syndrome is one of the autism spectrum disorders, classified as a developmental disorder that affects how the brain processes information. Common difficulties for sufferers include communication problems and forming friendships. And there are also day-to-day seemingly mundane issues that can present problems.

Neilson, co-author of the recently published book, Living with Asperger Syndrome & Autism in Ireland, says: “The two sensory things that I find the biggest problems are noise and smells. I don’t like noise from neighbouring houses and from people on the street. The smell off other people’s clothing and the smell of public places, such as cinemas, are things I find difficult. I always notice if someone has been eating in a room.

“It’s not so much that it offends me. But if say someone has been eating a banana, I ask them not to leave the skin in the work area and instead, dump it in the outside bin. People pick up that I can be intolerant. But once people know about my diagnosis, it makes things easier.”

Prone to terrifying panic attacks, Neilson says he can’t cope with the Mahon Point shopping centre in Cork. “It’s to do with the whole culture of making people move through spaces quickly so they’ll spend money. I find the noise and the smell of food quite oppressive. I find the open space at Mahon Point and the reflective materials there such as glass and metal very difficult to deal with.

“I’ve got to be able to see the outside so that if I have a panic attack, I’ll know where to go. I tend to go to the shops on Patrick Street and North Main Street because there are real roads and sky outside.”

Thanks to Aspect, an outreach service that is part of the Cork Association for Autism, Neilson occasionally goes out to lunch with his supervisors and others with similar conditions to get used to being in restaurants. But he has to go either early or late to avoid big crowds.

Neilson, born in Egypt to Scottish parents that worked overseas for the British Council’s education mission, went to a posh boarding school in England where he was bullied. “It was horrific. I was bullied by boys and men. It has made me wary of being alone in a room with men.”

As for relationships with the opposite sex, Neilson says he never had the teenage thing of wanting to be in a couple. “Other teenagers were going through things I couldn’t understand or relate to. But I actually met my wife when I was 17. Chryssa is Greek. She won a scholarship to study in a British university. She first had to learn everyday English and was sent to my school for a year. We were put together by the physics teacher because I had the neatest notes. I had to explain them to her. That was the beginning of our relationship.

“She later said I was the only normal person in the whole school. I went to an all-boys school initially. It was beginning to take in girls when Chryssa came. She thought it was like being on a movie set. Lots of the pupils were from very wealthy families. They walked around in their straw hats and jackets looking very proper and speaking in affected accents. It was like Brideshead Revisited.”

Neilson was very taken with Chryssa from the start. “She’s very interesting. And at the time, Greece had just come out of dictatorship, so there was all that to talk about. Chryssa is beautiful. Because she’s blonde, people think she’s Swedish or German.”

There was never any awkwardness between the pair. “It took a few months before we started going out together at weekends. We used to say we’d never get married because we didn’t believe in it. Then we decided to get married in a great rush. I was 20 and she was 21. One day, while cooking, I casually said that we may as well get married. She didn’t think it was very romantic.”

The only major problem that the couple encountered was that Neilson never liked socialising. “That can be a difficulty in a couple. I find parties very hard. Chryssa found that frustrating. It’s only recently that she has come to understand that it’s OK to go out and leave me at home. I think she used to feel guilty when she went out without me. She thought she was neglecting me. But she now realises that it’s not her responsibility.”

The couple’s daughters are 22-year-old Thalia and Melina, 12.

Neilson is on medication for anxiety, but most of the time, family life is fine for him. “Holidays are probably the biggest source of arguments. Chryssa doesn’t want to plan things in advance. I prefer to know what I’m going to be doing on Monday and Tuesday and so on. Also, I find flights very hard, being confined in an airplane. There’s no escape from smells.”

A sensory overload — “when there’s too much happening” —can mean he shuts down and stops being communicative. “At worst, I have a meltdown. That doesn’t happen very often but when it does, it’s not very nice. In a public place, I can get anxious and start taking it out on the people I’m with. I can be unreasonable and if I lose it, I can say very unpleasant things.”

Neilson is conscious that people may think he lacks empathy. He doesn’t always recognise the emotional state that people are in. “People talk to each other using signs that are not part of spoken language. If you don’t know what those are, it’s like watching a paranormal conversation going on between people.”