Against all odds: A young man living with autism

Published on Tuesday 11 January 2011 19:35

The Autism (Scotland) Bill goes before parliament today. One of its biggest supporters is a young man who knows what it's like to live with the disorder. Here is his story

• Cusack during his speech at his wedding last year

WHEN James Cusack stood up to make his wedding speech last September, his thanks to his parents were even more significant than usual. They knew, perhaps more than anyone else in the room, how far he had come in 12 years. Standing in front of 110 guests at Drumtochty Castle in Auchenblae, Aberdeenshire, 24-year-old James had just married his university sweetheart, Jenny, also 24, when only a few years earlier he had been "scared" of girls.

Secondary school had become intolerable for James as the social interactions had become more complex. He could not board a bus, for example, and he did not want to wear anything other than a tracksuit. Diagnosed with autism aged 12, James is one of 50,000 Scots living with the disorder, which runs the spectrum between those who can lead "everyday" lives, and those "unreachable", unable to communicate or function without 24-hour care.

Some Scots with autism are never able to leave residential care, and half of parents and carers say their adult child with autism needs full-time support. Only 13 per cent of adults with autism are in full-time employment, and half struggle to make friends.

At the age of 13 James spent three weeks sectioned in a psychiatric ward, terrified and overwhelmed by what was around him.

People with autism can find it incredibly hard to make sense of the world and everyday life can be confusing, meaningless or even frightening.

So, as his parents looked on at James giving his wedding speech, they knew the problems he had overcome to gain a degree, get married and work towards a PhD studying the condition.

"'There was a time when a lot of people didn't believe I would stand here,'" James recalls telling the wedding guests. "'But my parents never gave up.' The wedding was not about being defined by autism. But in the speech, there was no point in denying I had not come far.

"It is incredible where I have come from in 12 years. It is emotional when I think back to where I was and where I am now, and how bad things were and how good things are now."

And things were bad in the first year and a half after being diagnosed. Even wearing anything other than a tracksuit was a challenge, not just because of comfort but James existed in a world where change was frightening. The look suited his obsession with football, which was all-consuming. He played at every break, lunch and after school, training eight times a week.

"Eventually I couldn't continue with football," says James, who now plays the game socially and follows Aberdeen. "Players were making jokes and I just didn't understand it. I was taking everything they said literally and thought people were going to beat me up. And I thought girls were strange for not wanting to play football. I played so much it was a little unnatural. I needed to play it all the time. I would become obsessed in the details of things, rather than social interactions. So my school reports were polarised. If a teacher was very strict, then I performed very well. My mum felt there was something not quite right. My brother was 15 months younger so to my mum, there was a clear contrast."

The original diagnosis, that he had Asperger's Syndrome, hit James' parents hard. His dad, Allan, is an engineer, and mum June, a nurse.

"I remember mum came out crying and I asked her what was up a few times and she just said, 'It's fine, it's fine,'" says James, who now defines himself as having autism, which includes Asperger's in its spectrum.

"Mum just wanted to make sure I was OK, and dad wanted to find a solution out of it. I think he was trying to be as positive as he could and get some control over it."

James says his parents wanted to see how he did at secondary school, as he moved up from their local Balmedie Primary in Aberdeenshire. But the transition to secondary can be hard enough for youngsters; James found it almost impossible.

It was months before James's parents told him about his condition, offering limited literature they could find on the internet. Autism is a spectrum of conditions, which can affect each individual differently, making it even more difficult to describe initially.

"My parents sat me down and said, 'This is your disorder.' My first impression was of someone who struggled their whole life. At secondary, I couldn't even get on the bus. It was so hard and scary. It just got worse and worse, and I got more and more depressed. I was aggressive and rude to people.

"I thought to myself, 'What's the point? I'm going to be miserable the rest of my life and a burden on people.' Everything was getting internalised and I had a very negative outlook and there was no solution – it was spiralling. The staff at the school were doing everything they could to understand but didn't have the experience or knowledge or infrastructure."

The psychiatric unit was the lowest point for James, not because of the unit itself, but because he had to interact with new people.

"My parents had to literally drag me by my arms and legs and that must have been horrible for them. I just wanted to hide in a corner and not speak to people any more. I was overwhelmed by seeing other people there with more significant needs. It was as though I had no future – I couldn't work, and would need support the rest of my life. An educational psychologist said I would never go to university.

"And my parents believed that the future was bleak based on the literature they had read. They felt that this was a long-term disability and for the rest of my life I would require support.

"There was a feeling of guilt they later said they had. They felt that they had been taking the wrong approach for 12 to 13 years with me and that this had made the problem.

"This was a bit harsh on themselves, but I can understand in a way why they felt that way, albeit an unfair self-criticism. They were trying to get their heads around autism. They knew nothing about it – they didn't get offered any information or support. There's no structure in place, even today."

Remembering the problems of his first years with autism, and the subsequent support he received when he later moved to another school, is the prime reason why James has become a vocal advocate of proposed legislation going before the Scottish Parliament this month.

Central Scotland MSP Hugh O'Donnell proposed The Autism (Scotland) Bill to place a legal obligation on the Scottish Government to produce a strategy for autism services throughout the country. The Education Committee said on 17 December that it would not support the general principles of the Bill, but the National Autistic Society (NAS) continues to push for its approval as it goes in front of the full parliament today. NAS says the lack of a "joined-up" approach between councils and other agencies is the reason why many Scots with autism are "invisible", despite the significant spending.

James is more blunt in championing the legislation. He argues the support he received proves the benefit of ending the "postcode lottery" of provision around the country. He started attending Dyce Academy in his second year after the family moved to Newburgh. The school's Mainstream Integration of Children on the Autism Spectrum Disorder (Micas) base offered James a teacher and five classroom assistants who gradually eased him into the day-to-day school life he had found impossible.

He says: "In the Micas base they used a range of techniques, including one-to-one counselling, cognitive behavioural therapy, social skills building and real-life simulation. It also used language awareness, removing the literal interpretation of everything. Another key factor to their success is the way they interact with health authorities. If you have a referral to a GP, psychiatrist or psychologist, the base will send an update to keep the health authorities in the loop, so decision-making is more effective.

"It's a very slow process. But within the first year, I was starting to go back to classes. When I first went into classes, I thought really intensely about what's going on. You can almost over-think, trying to get to a level other people are at naturally. It took a huge toll getting through the day – I would get home at 4pm and go to sleep. I just found the social interactions and everything exhausting."

Everyday school events, such as walking down a corridor, or going to class unsupported for the first time, were a "big deal". But by his fourth year, James had achieved six firsts in Standard Grade exams, then started to go to parties and meet girls. And by S6, the process of going through Micas gave him enough confidence to push forward, ultimately winning Most Outstanding Pupil of the school.

On his second day at the University of Aberdeen, James met Jenny. He felt he should tell her, early on, about his autism. "I definitely felt I had responsibility to let her know in case I did something that was odd," he says. "To her, it was not a big deal. When she met me, she didn't see anything that really stood out. It was just part of who I happened to be. I don't think she goes through the day thinking, 'Oh, I'm going out with someone with autism.'"

Now married to Jenny, a medical doctor, and nearing the end of his PhD studying whether people with autism have difficulty detecting the actions of others, James is caught between being defined by autism, but not letting it define him. "I'm a very normal person, but under all of it I'm still a person who struggles with things on a daily basis.

"If I'm working on something from 9am I can go until 10pm and forget to eat. I cannot sleep because I'm so focused on what I'm doing. If I'm stuck on something, I will get up and pace back and forth – I just noticed that the other week.

"Maybe I'm always going to be obsessed by this disorder. It's probably taken over from football."

BATTLE FOR THE BILL

• The Autism (Scotland) Bill was introduced last May by the LibDem MSP Hugh O'Donnell to create what he described as a "level playing field" for those with the disorder. A key requirement of his bill, which goes before the full parliament today, is that ministers would have to publish an autism strategy aiming to improve the current entitlement of people with the condition.

• It stipulates that NHS bodies and local authorities should have regard to any guidance issued in the strategy. But Holyrood's Education, Lifelong Learning and Culture Committee said last month it was not convinced the government's own strategy would be improved by the bill. Members argued the proposed obligations were not "robust enough," but committee convener Karen Whitefield said MSPs recognised the good intentions and goodwill behind the bill.

• She added: "We are also concerned this bill could create a perception of two-tier disabilities, with some strategies thought of as more worthy of legislation and therefore seen as having more weight."

• James Cusack says the bill is vital to addressing the postcode lottery of provision on autism, which he has experienced growing up and seen in research for his PhD. "If you don't know how many people with autism are in your area, how can you plan service provision?" he said.

• "Councils have known about autism for 15 years and they have not acted, so if you introduce a strategy without legislation, at a time when councils are cutting services, do you really think they're going to do something? We need legislation because the areas that are bad don't deserve a choice. And if you think it shouldn't just be for autism, then expand it for everyone, because otherwise you're just saying universal mediocrity is acceptable."

www.dyceacademy.aberdeen.sch.uk/micas.htm

www.scottish.parliament.uk/s3/bills/44-Autism/b44s3-introd.pdf