Mar 30th, 2009 | By Reesh Lyon | Category: Featured Article, Front Page Layout, Student Features

Asperger Syndrome is a mild form of autism that affects one in 300 people, but what is it and what is it like to live with? REESH LYON put these questions and more to a local Asperger and found insights into living, working and dealing with the syndrome.

ALAN GEORGE (pictured)  struggled for years to work out why everybody else seemed so different from himself.

He says people often assumed he was “stupid or perverse”, when in fact it had never made sense for him to do what everybody else did.

After dealings with mental health services got him nowhere, Alan, 52, started researching his symptoms and figured he might have Asperger Syndrome.

Typified by social awkwardness and behaviour that might seem odd to others, Asperger Syndrome is a form of autism. But there are significant differences - in particular, some people on the Asperger spectrum don’t exhibit learning difficulties and are highly intelligent. This characteristic is certainly evident in Alan’s conversation.

Diagnosed two years ago by a private clinical psychologist, he says the diagnosis itself gives him an understanding of what he can do and who he can relate to as he copes with what he calls an “invisible disability”.

Before the diagnosis Alan was “exceedingly isolated” as he didn’t know how to relate to others. He spent most of his time at home, had a long beard and long hair, and didn’t wash often.

“It wasn’t armpit smell, I suspect it was book dust,” he says, referring to his obsession with collecting books.

Pre-diagnosis he used to climb over piles of books to get to bed, and then have to kick books out of the bed once he got there. Before he could wash, he would have to throw books out of the bath tub.

Close friend Peter Stjernfelt, who has been helping Alan get to grips with the small things in life, observes that the book collection is now an “organised chaos”, with banana boxes full of books piled everywhere rather than piles of books: “He’s making things work for himself… there are no longer books in the sink.”

The diagnosis – for which Alan paid $1400 from his own pocket – allowed him to be treated accordingly and he now benefits from anti-depressants and anti-anxiety drugs.

He says his social skills started to improve soon after he got a job to pay his clinical psychologist’s bill.

Working as a dishwasher at a local restaurant, he found other employees would ask him how he was doing. This helped him learn to be more social, as he realised other people were interested in him and his progress with Asperger Syndrome.

He likens his social learning curve to a snowball rolling down a hill: The more he socialised, the easier it got. This was a positive step for someone who used to be so anxious he would rarely leave the house

“You get more and more comfortable with people,” says Alan.

In contrast to his previous hermit-like existence, he now socialises at pub quiz nights (pictured), walks dogs for his neighbours, and enjoys get-togethers with other adults with autistic tendencies.

A member of Autism Wellington, Alan attends its adult support group once a month in Johnsonville. He says it is much easier for him and others in the group to relate to people on the autistic spectrum.

The meetings give members a feeling of safety, as they are not “under pressure to be social in a regular type of way”, says Alan. “We accept each other.”

But he points out that within the group, some sub-groups and individuals are harder to deal with than others.

Knowing his diagnosis, and taking his medications, means Alan can live much more socially. He says while he is still progressing, people feel more comfortable with him now than they did previously.

Alan was first prescribed Prozac in 2002 and he soon found that his obsessive-compulsive tendencies began to diminish. He cites being able to leave the house without having to worry about leaving things behind, as he knew he could always go back and get them, “except the keys”.

This is in stark contrast to the countless times his ex-wife had to remind him “keys, puffer, purse” every time they left the house.

The couple met in the 1980s and Alan recalls they were married for “about five years” although she assures him it was “much longer than that”. At first they found that his condition was matched by her bi-polar disorder but eventually they divorced, and now remain good friends.

Born in Levin in June 1956, in his teens Alan attended Horowhenua College – a school he “thoroughly hated” except for history and English classes.

He says back then psychological disabilities were regarded as a personal or moral failure and people like him were seen as psychiatrically unwell. Autism was deemed a learning disability and those with the condition were therefore “retarded”.

Jen Birch, author of Congratulations!  It’s Asperger Syndrome, was also diagnosed with the syndrome as an adult. She says: “Asperger individuals being assumed to be ‘mentally retarded’ is a fairly common reaction from other, ‘normal’ people.”

Even brilliant people with Asperger Syndrome or autism can get this reaction, she says.

“This can still happen. Fortunately, there is now somewhat more societal awareness of autism spectrum disorders, but ordinary people who are not familiar with the characteristics of these disorders are still quite likely to feel that Asperger individuals are strange, weird, mentally retarded or learning disabled.”

Although the concept of Asperger Syndrome was originally developed by Austrian paediatrician Hans Asperger in the 1940s, it was not until the work of Lorna Wing in the ’80s that it began to get widespread attention.  But even then, the syndrome was normally attributed only to children and adolescents, with little emphasis on adults with autism.

For a long time, Alan was treated in the mental health and psychiatric system, but he believes that along with a lack of time and staff, psychiatric authorities were reluctant to diagnose patients.

He says a fundamental flaw was that staff were focused “not on self-help, but them helping you”, which often simply meant prescribing medication.

People with Asperger Syndrome were often given jobs of little or no responsibility, and in many respects he didn’t mind that. He says one of his favourite jobs was working on a poultry farm soon after leaving school.

While people like Alan can learn to live more social lives, he says it is “still near-on impossible to find meaningful work”.

Many people with the syndrome have a good memory, are patient and diligent in their work. Mechanical jobs that require memory, repetitive action and focus on detail are ideal, Alan says.

 But job interviews can prove to be a major hurdle.

Alan finds it hard to relate his skills to prospective employers and feels that he and others with autistic tendencies are wasted because job interviews are “socially mediated, not by facts”.

“We don’t even get close to the jobs. If you don’t have social skills and experience, you don’t get in the door.”

This is another area to which Jen Birch can relate: “Unfortunately, what Alan says about getting jobs and even getting interviews is more or less true for many Asperger individuals.”  

She too had many workplace difficulties during her adult life, until her own diagnosis at the age of 43.   The diagnosis helped her get into the workforce as she could apply for supported employment services – agencies which help people with disabilities get good jobs.

This, she says, is preferable to “sheltered workshops or any other demeaning sort of work for people with disabilities”.

Currently on the invalid’s benefit, Alan gives back to the autistic community by doing volunteer work for Autism Wellington. He helps five-to-nine year olds learn social skills – work he finds both enjoyable and rewarding.

“Their social skills and my social skills are pretty much equivalent.”

Although Alan is in his early 50s he can occasionally slip into behaviour of someone in their mid-teens – “and the next minute start acting like a six-year-old”, he says.

For example, he can be immediately enthusiastic about something small and it can overwhelm him. He cites once standing in the middle of a quiet library laughing hysterically about something minor.

He has a sharp sense of humour and, although his jokes sometimes fall flat, there are occasional moments of comic brilliance. The jokes he tells are often the result of his ability to make unusual connections between things – another quirk he puts down to Asperger Syndrome.

While many other adults with the syndrome live with family and are dependent on them, Alan lives by himself in the Wellington suburb of Brooklyn. He is learning to cook proper meals with the help of his friend Peter, who taught him skills such as shaving that seem natural to most people.

Whereas Alan’s diet used to be strictly potatoes three times a day (he does have an Irish heritage), he is now likely to eat a more wholesome dinner such as pork and rice with cream sauce – followed by watching one of his two favourite TV shows: Spongebob Squarepants or Fox News.

Peter, who holds a psychology degree, believes having friends to support Alan is very important. He notes that children on the Asperger spectrum have much more support than adults and speculates this is because “kids are cute, adults are not”.

Having toured North America twice, Alan doesn’t rule out travelling again as it helps him get perspective on life back home.

“[Travel] gave me a sense that social behaviour is different in different places,” he says. “You got the feeling that because you were from outside the area, people could accept you were different.”

Still collecting and trading books, Alan would love to run his own bookstore one day, although he doesn’t have a long-term plan and lives day to day.

One thing he is keen to pursue is tertiary education: He is looking into university history courses. As someone who comes across like a walking encyclopaedia, Alan may well find he feels at home steeped in historical information and analysis.

As with previous years, the conference papers are supplemented by lively public forums in which anyone can ask questions of the authors, share opinions and wrestle with the diverse thoughts of others.

In contrast to some events documenting the progress of autism research, this conference makes great efforts to fully include the viewpoints from autistic people themselves. It is also heartening to witness the openness with which some researchers allow their theories to be vigorously challenged by well-informed members of the public. Debates about autism can get mighty firey at times, especially around topics of causation and also the seemingly contradictory positives and negatives of being assigned a place on the spectrum (or finding one’s children situated there).

The host of the conference is Autism Cymru, an autism charity organisation based in Wales. Due to the large numbers of people attending past conferences, it has been necessary this year for the organisers to charge the small fee of 3 pounds. But well worth it in my opinion.

You can drop in now to the AWARES conference centre to view the abstracts and also register if you so decide.