Normal life beckons, against all the odds

13th May 2005 at 01:00
Autism is a life-long disability but it is not a death sentence. One sufferer is now at university, thanks to a school unit that taught him coping strategies, Rory Macdonald reports

Life at university can be hard, but for one young man I know it has been harder than for others.

Upon arrival in halls, he told me and some friends - albeit after a long period of sitting in the corner by himself before being invited to come and join our group - that he had ruined four people's lives. He then fell about on the floor crying. We left the room swiftly.

When we eat in the canteen he will always sit at least one seat away from anyone else.

He is away in his room a lot and doesn't speak to others unless really necessary, though he has, on occasion, told people of his intentions to commit suicide. Not only is this young man severely depressed, feeling excluded and uncomfortable in social situations, he is suffering the effects of Asperger's syndrome and it seems he is struggling.

The sad thing for this young man is that while the effects Asperger's syndrome can have on life are intense in severe cases, most are not so serious and, if it is spotted early, sufferers can become normal functioning members of society. Nineteen-year-old James Cusack is living proof.

James started secondary school at the age of 12, having just been diagnosed with Asperger's syndrome. At that time, life for him was tough. He had high anxiety, suffered depression and struggled to communicating with people.

Like the young man in halls, he contemplated suicide: jumping in front of a bus was his method of choice. He decided against it because he thought the bus driver would have to live with a guilty conscience.

But isn't that is a show of empathy, one of the key things people suffering any form of autism are supposed to lack?

"There is no set criteria with Asperger's whereby everyone fits a particular stereotype," James says. "Different people suffer from different sections of the criteria."

After it was first recognised that James had a problem, no one knew what to do. He was put in an anger management unit for children with severe learning difficulties and even a child psychiatric ward. It wasn't until he went to Dyce Academy, in Aberdeen, that things got better for him.

At the school's revolutionary Mainstream Integration of Children on the Autistic Spectrum (Micas) base, he was met with the sort of help that was needed and people who knew how to deal with his problems. It was thanks to the specialist attention he received that James was able to get to grips with things that most of us would consider everyday.

The National Autistic Society rated the facility as excellent and HM inspectors called it "something that should be used as a blueprint".

Vitally for Asperger's sufferers, the staff, of whom James cannot speak highly enough, were able to show that they were on his side and helped him to cope with his secondary problems - depression, anxiety and so on - before working on the primary effects of the condition, such as the struggle in social relationships, difficulty with communication, lack of imagination, special interests and a love of routines.

James - who I never would think to be an Asperger's sufferer if I didn't know better - is firm in the belief that progress starts simply with state of mind.

"You're not going to get an alcoholic to give up drinking unless he is in a positive state of mind," he says. "It is the same with Asperger's. You have to want to improve your life."

Accepting his diagnosis bred a lot of negativity in his mind. He was always aware that "there is something wrong with me" and had doubts such as "Do I appear different?" It was largely this that led him to contemplate suicide, as he thought himself to be a burden on his parents.

James says: "It is almost worse not to be severe, because you are more aware of it and are thinking about appearing different."

Now he is studying at Aberdeen University. He left Dyce Academy after sixth year, crowned Prom king, a sign of social acceptance that one would not have expected for a young man who could barely tolerate social contact when he first went there.

"It is a revolutionary therapy and I feel so lucky to be one of the first people to go through it," James says.

"For a lot of years people should have been getting what I got. It is changing now but very slowly.

"I reckon that in the next 10 years Asperger's will become accepted in society to the same level that dyslexia is now."

There is no cure for Asperger's syndrome but, if it is caught early enough and acted upon correctly, sufferers can develop coping strategies and life can be fulfilling. James has written journal pieces and gives talks to help raise awareness and understanding. Characteristically of an Asperger's sufferer, he is motivated and focused on his goal.

James Cusack's presentations and work promoting awareness of autism have won him much recognition, including an Aberdeen Evening Express Champion People MICAS UNIT

Dyce Academy's Mainstream Integration of Children on the Autistic Spectrum (Micas) unit is staffed by two full-time teachers, three full-time auxiliaries and a part-time auxiliary. It caters for eight children aged 11-18 who are diagnosed as having high functioning autism or Asperger's syndrome.

It was the first unit of its kind. There is now a second one at Harlow Academy, Aberdeen, and there are hopes of a third. There are many more applications than there are places.

The pupils spend 65-95 per cent of their time in mainstream classes and the rest at the specialist base. Autistic spectrum disorder behaviours are assessed soon after arrival at the unit and annually thereafter. A form of client-centred assessment and therapy is ongoing throughout each pupil's time there.

The pupils follow a carefully designed Asperger specific curriculum that aims to target their specific difficulties and teach them skills they require to take their place in society.

Cognitive behaviour therapy is used to teach "theory of mind" skills, the unspoken rules of society and verbal and non-verbal language. Pupils are taught how to recognise emotions and understand ambiguous language, such as idioms, metaphors, irony, sarcasm and teasing. They are also taught organisational skills, assertiveness and relaxation.

The pupils' days need to be highly structured and they need to be coached how to make choices initially. Pupils cannot cope with the full curriculum, but on average sit about six Standard grades, going on to Intermediate and Higher in two or three subjects. Some of the mainstream homework is carried out in the unit, where they can receive staff support.

Principal and subject teachers are given a profile of the pupils to help them understand their behaviours and how to deal with them. Mainstream staff attend evening classes to increase their knowledge of autistic spectrum disorders.

Pupils are encouraged to develop friendships within their peer group and join their peers on school trips. The ultimate goal for each is independence in class.

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