On the spectrum

DR STUART NEILSON dislikes tying his shoelaces, walking through crowded streets, and refuses to take off his jumper on sweltering sun holidays because he hates the feeling of air on his bare skin.

Every time he goes shopping, he rehearses the infinite number of ways in which the shopkeeper may interact with him, and he prefers predictable daily events, like having a daily schedule of activities and checking out unknown destinations on Google Streetview before he leaves the house.

Dr Neilson also has a PhD in Statistics, and lectures in the Disability Studies module in University College Cork. When he was diagnosed with Asperger Syndrome four years ago, he felt nothing but relief.

“All my life I felt odd in some way. There was nothing at all negative for me about being diagnosed. It was such a revelation and I found it very helpful,’’ says Dr Neilson.

Labelled a troublemaker in school, Dr Neilson had difficulties with learning to read, and was sent to and kicked out of remedial classes. He absorbed himself in building complex Lego structures, and had a lengthy obsession with Egypt, learning how to write people’s names in hieroglyphics.

Unable to understand the subtle nuances of everyday social interaction, and often failing to read body language cues, he was unpopular during secondary school. Before completing his A Levels, a teacher said “I really hate you Neilson, you’ll get an A in Chemistry, and you’ll do it to spite me”.

In adulthood, Neilson received psychiatric care for depression and anxiety, and was once commandeered by two security guards in a hospital because he reacted aggressively to a doctor’s unexpected touch.

“Having an over-emotional response to something trivial is embarrassing,” he says.
When he arrived home after an occupational therapy consultation with a bundle of leaflets about Asperger Syndrome, Neilson says his wife wasn’t surprised. He now attends regular occupational therapy, where he learns about social interaction, language and relationship building.

“Being diagnosed has made life easier,” says Neilson, who looks forward to opening a dialogue about autism in the new Certificate in Autism Spectrum Studies (CASS) in University College Cork (UCC).

The only course of its kind in Ireland, CASS has been designed for anyone wishing to gain a broader understanding of the issues affecting the lives of people with Autistic Spectrum Disorder (ASD). Modules include an examination of the historical context of autism, how behaviour and communication can pose challenges for people with ASD, policy and practice around ASD, and explores mental health and well-being issues with people with ASD.

Beginning in September, this part-time Adult Continuing Education Course is open to anyone 21 years or over who has achieved Leaving Certificate/ FETAC Level 5 or equivalent. The course is already almost fully subscribed.

“I’m delighted it’s got off the ground and there’s a huge need for it. We’re very passionate about it,” says course co-ordinator and lecturer at the Centre for Adult Continuing Education (CACE), Sheila O’Driscoll, who is working with Brothers of Charity, COPE, Shine Ireland, Cork Autism Association, and Aspect (an outreach service for adults with high functioning autism or Asperger Syndrome), to design and deliver the course.

“We created the course in response to requests from parents and people working in the area of autism, and we’re almost full now, which is unheard of,” says O’Driscoll, who has extended the course to Bantry and Limerick venues, due to the high demand.

Prospective course participants include parents, teachers, special needs assistants, nurses, occupational therapists and speech and language therapists.

“A lot of parents told me that they’ve done lots of research, and had to go abroad to educate their children. Many of them had to find other ways to educate their child because facilities weren’t available here at the time,” says O’Driscoll. “Two people who are on the autistic spectrum will be involved with the teaching, as well as psychologists, occupational therapists, speech and language therapists, dieticians, teachers and others who all work in the area of autism,” she says.

Affecting one in 88 people, ASD is a neurodevelopmental disorder in which individuals experience difficulties with social interaction, communication and flexibility of thought.

Chief executive of Shine Ireland, Kieran Kennedy, who will lecture on the course, hopes that the success of this course will facilitate the creation of a suite of courses about ASD in UCC.

“There’s a greater awareness of autism now — it seems to be more prevalent. Every village and town in the country has somebody on the spectrum living there,” says director of services at the Cork Association for Autism (CAA), Joe McDonald.

“Modern supports are supporting individuals to access mainstream education, community settings, social groups, clubs and societies. People are being confronted with the issue and are relating and communicating with people with autism, and I think it’s great.”

McDonald flags the importance of examining policy and practices involving both children and adults with autism.

“The course will be covering the whole lifespan of a person with autism.

“If you Google ‘autism’, you’ll see mainly children. But it’s very important to recognise the challenges that people with autism face when they turn 18,” he says.

“There is the transition from mainstream education or from a special school to university or to traditional day services for those with an intellectual disability as well as autism. There could be a move from the family home to residential support which is in itself is a big change. There are issues around sexuality which are hugely important, and issues in terms of bereavement and the loss that occurs when parents die. All of these issues are extremely important,” says McDonald.

Costing €990, the CASS will run in UCC, Bantry and Limerick on one night per week throughout the academic year.

“It’s not just about delivering information and giving best practice. It’s about looking at the issue of autism and the nature of being human. A person is much more than a person with autism. They also have the same issues as we all have. Hopefully people who are doing the course will inform other people and gradually people will understand what it’s like to be on the spectrum,” says O’Driscoll.

* For further details of module descriptions and assessments, see study.ucc.ie/ace

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