When Stuart Neilson was diagnosed with Asperger’s Syndrome four years ago at the age of 46, his wife immediately said the diagnosis, an autism spectrum disorder, made sense.
A Cork-based mathematician, Neilson says he always had difficulties, being perceived as eccentric and having trouble relating to people.
“I suffer a lot from anxiety and from not understanding why conversations go wrong,” says Neilson. “I ended up in the mental health system and was treated for depression. But there was a gradual realisation that this wasn’t helping. A psychologist suggested that I go away and read about Asperger’s Syndrome and come back and say what I thought.”
Neilson’s condition manifests itself through difficulty “understanding emotional conversation and trying to get on with people, particularly when I meet them for the first time. I have a lot of sensory problems; I’m very sensitive to noise, fluorescent lighting and the sound of music coming from neighbours’ houses. I have tactile sensitivity. That’s why I find shopping hard. I don’t like being touched by people. Also, I cut out all the tags from my clothes and I’m very icky about what I wear. I have to have natural, soft fabrics.”
A father of two, Neilson says he is fully accepted at home. He attends Aspect, an outreach service for adults set up by the Cork Association for Autism. “I have been assessed by an occupational therapist at Aspect. Being my age and not knowing I had sensory issues, it was a revelation to find that out.”
Neilson is conscious that people may think he lacks empathy. “I don’t always recognise the emotional state 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.”
On medication for anxiety, Neilson says he always felt different from other people. “At school, I was marked down as a trouble maker. I was sent for different kinds of assessment for behavioural problems but there was no recognition of Asperger’s Syndrome when I was a child.
“I was put into remedial education, which didn’t work. I hated school, although I did reasonably well at it. But I was the odd one out; never picked for anyone’s team. But when I went to the University of Sussex to study computer science, I loved it. I went on to do a doctorate in maths at Brunel University in London.
“I like mathematics. It’s a beautiful subject that allows you to express so many things. There’s a rightness about mathematics that you don’t always get in language.”
Neilson is currently working towards a diploma in disability studies. He would like society to understand his condition. “I want to get a more sociological perspective on the way people feel about being disabled.”
Children with autism are often perceived as “bold and very manipulative, but they’re not,” says Geraldine Graydon, a Dublin-based mother of 23-year-old Andrew who has autism and is high functioning.
Graydon advocates for families with autistic children. She points out that what looks like bad behaviour such as screaming and running away “is really all about communication. These children are trying to tell you they’re not happy. They’re frightened and don’t know what’s going on.”
Andrew was diagnosed at the age of seven. “He had reached all his milestones but his language hadn’t developed. We knew he had language but he didn’t use it the way other children did. He could say words but couldn’t string sentences together. He also developed tantrums that went beyond the “terrible twos”. The doctors kept referring to Andrew as a very exceptional child. I was going to kill the next person who said that to me.” Andrew was expelled from playschool after three days “because he wrecked the place when he had a meltdown.”
Eventually, Graydon got her son into a community playgroup, run by a friend. “I couldn’t get Andrew into a special school. Our local school had a unit for kids with intellectual disabilities. But Andrew’s IQ was too high to be accepted into that school.
“We had no option but to put him into mainstream education. He lasted for five weeks. He spent a year at home with me until he was six when the State has to provide education for children.”
Andrew attended Ballyowen Meadows in Stillorgan where autistic children are catered for. He then went to Setanta School on the same grounds as the primary school.
“He mainstreamed at 19, attending the VEC in Dún Laoghaire where he sat the Applied Leaving Certificate. He is now doing a computer course.”
Over the years, Andrew’s speech improved. “We discovered that he was one of those children that is hyperlexic, able to read long before he could comprehend what he was reading. The more Andrew’s language developed, the less often the tantrums occurred.”
Graydon says there is still a gap in her son’s comprehension. “Because autism is a developmental delayed disorder, his emotions and understanding of language are delayed. He’s not a mature 23-year-old.”
Andrew, one of five children, lives at home. But it’s difficult for his family to provide the kind of support he needs. “He’s now an adult in mainstream education. His college treats him like an adult but his language and understanding is not fully there.”
Graydon worries about her son’s future. “The family provides a lot of scaffolding for Andrew. He can use public transport but can’t manage during rush hour, so one of us will pick him up. When he’s at college, we’re like detectives, trying to find out what his problems are. He wants to remain with us but there is a need for some sort of home package for him.”
About 47,000 people in Ireland are living with autism. Graydon says there seems to be “a resistance in this country towards supporting people with autism. They’re being totally ignored by the state. A strategy is needed. It’s tragic what is happening. Lives are being destroyed. There’s no need for that because a lot of high functioning autistic people are capable of working and being independent.”