Odd ones out

1st March 1996 at 00:00
Asperger syndrome is a little-known form of autism that brings great distress to sufferers and their families. An early diagnosis and sympathetic teaching are essential. Susannah Kirkman visits Southlands School, the first to specialise in educating Asperger's children. Nine year-old Simon spent two terms in the corridor at his primary school, refusing to go into class. Nor would he join the other children in the playground or dinner hall.

Simon suffers from Asperger syndrome, a mild form of autism which hinders communication and means Simon cannot relate to others, even though he is highly intelligent and speaks fluently.

He is now a pupil at Southlands School, an independent boarding school in Hampshire and the first in the country to specialise in educating children with Asperger syndrome. Today the school opens a helpline and advice service for parents and professionals, caught in the mystifying and sometimes tragic world of autistic children.

"His primary school was very caring," says Simon's mother Jane. "But he was struggling to cope socially."

Severe autists are totally unable to make sense of, or relate to, their surroundings. Asperger sufferers have particular difficulties relating to people and may be plagued by irrational fears and anxieties. The nuances of relationships, behaviour and language are a mystery to them so that, as children, jokes and imaginative play leave them cold and socially isolated. Their condition makes them easy targets for bullying.

Ten-year-old Sam was bullied at his primary school and is relieved to be at Southlands where he doesn't stick out like a sore thumb. "I like it here because I'm the same as everyone else."

The causes of Asperger syndrome are not certain, although a genetic link is now suspected in some cases. Parents can often recall an eccentric aunt or uncle somewhere in the family. It is eight times more likely to occur in boys than in girls.

Maggi Rigg, who is head of the new school, says they appear ego-centric. "They can be very pedantic and long-winded, not picking up signals which would tell them that other people are finding them boring or hard to follow. They're sometimes gauche and they can appear rude or arrogant."

Language is often taken literally metaphors, exaggeration, or irony simply don't make sense. "At a nursery school I visited recently, one of the nursery nurses told the children to wipe their feet on the mat, and a little boy with Asperger syndrome took off his shoes and socks and literally wiped his feet on the mat," recalls Maggi Rigg.

The school rules at Southlands are written clearly and unambiguously. In the dining room, for instance, posters designed by the pupils remind them to "sit quietly" and "talk quietly." The main school rules include, "Please be gentle," and "Care about your bodies."

Pupils may assume that other people know what they're thinking and planning. An enthusiastic jogger at Southlands, who disappeared for three hours one afternoon, was amazed to find that the police had been called. He was sure his teachers would know where he was.

Frustration and depression are more evident because these are intelligent children, aware that they are different from everyone else. "I'm insane, " says 12-year-old John when he is introduced. He has an IQ just two points short of MENSA level, but he has pinned up a self-portrait in his study-cubicle which he has labelled,"Idiot".

"They arrive here with very low self-esteem," says Maggi Rigg, "super-sensitive to criticism and advice." The school aims to boost confidence and gives regular rewards for all kinds of achievements with certificates presented in assembly every week. One boy has just received a special mention from a cleaner for keeping his room tidy, another gained merit for washing the eggs from the school hens on freezing mornings without complaint. "Nobody's ever told me I've been brilliant before," one pupil confided.

Good behaviour is also encouraged through the school's points system and individual star charts; the ultimate reward is a trip to the cinema or to a pizza restaurant. Sanctions include missing a local youth club meeting, or repairing damaged property.

When 11-year-old Graham arrived at Southlands, he would fly into a rage the minute anyone said "no" to him, spitting, shouting abuse and , once, shinning his way to the top of the basketball post. "A lot of our work is anger management," explains Maggi Rigg."We tell them that it's OK to feel angry, but they must learn to manage it." Graham now takes himself up to his bedroom if he feels angry or says that he needs "time out".

On trips into Lymington, the local town, staff carry small "visiting cards" with them in case there are any public outbursts. The cards give a brief explanation of Asperger syndrome so that passers-by can understand the bizarre behaviour they may have witnessed.

Although they sometimes have to cope with very aggressive behaviour from the pupils, staff welcome the chance to work with children who can be surprisingly articulate about their own problems. "It's a great privilege working with them. They have told us more than any book what it feels like," explains Maggi Rigg adding that the school has adapted and developed its approaches, "based on what they have told us."

Parents are full of praise for the school's attempts to improve pupils' social interaction. "It's gentle integration," Simon's mother, Jane says. "Pupils have their own desks, noticeboards and equipment, so they can work on their own without feeling threatened, but they do some work together in small groups. "

There are no team sports at Southlands; the pupils wouldn't understand the concept of team play. But there is a vast choice of outdoor activities, ranging from fishing and water sports to mountain biking and go-karting. Inside the huge Georgian country house where the school is based, there is pottery, music, juggling and crafts. "Their social skills are so poor that they're frightened of doing new things, so the outside activities are very important." says Alison, John's mother.

The school tries to make allowances for individual hobbies as much as possible. Many people with Asperger syndrome develop almost obsessive interests and may display extraordinary talents. One boy at Southlands has taught himself to play the piano, although he can barely read. Another has mastered eight foreign languages through correspondence courses.

Many of the boys will follow GCSE courses at the school, or attend the local comprehensive or FE college for any courses which Southlands can't provide. But to most parents, the acquisition of social skills is at least as important as academic qualifications.

"John may well get a degree in computer studies, but if he's so phobic that he can't visit a supermarket in case he meets a dog or a baby, he won't be able to use his intellectual skills," said Alison. The school tries to teach skills like relaxation techniques, home care, socialising , personal organisation and grooming, so that pupils can gradually learn to take control of their own lives. Parents also like the sense of security and support which the school offers.

"John now says he's only frightened of one or two people now, instead of everyone," said Alison. "He's made a lot of progress since he started at Southlands. He's getting help at a key stage in his development, before he withdraws completely."

Alison, who is a GP, believes that early diagnosis is essential if sufferers are not to end up in young offenders' institutions, or swelling the suicide statistics. When a diagnosis is finally made, many children experience a tremendous sense of relief at being told why they are different.

"I knew there was something wrong. I was dreading going to secondary school, " John said when his parents told him he had Asperger syndrome.

Maggi Rigg admits that the majority of parents would not ideally choose to have their child in a residential special school, but she says that families can see the benefits of the 1:3 staffing ratio and the "24-hour curriculum. " Each child has an individual learning programme and a personal tutor who monitors progress and keeps in close touch with parents.

The demand for schools like Southlands is enormous. After a term, the school has had a surge of applications and will soon fill its complement of 45 places costing around Pounds 15,000 a term and mostly paid by the local authorities.

The future for pupils is not so secure. Some may go on to higher education and regular work. Others may always need a more sheltered environment.

But the improvements parents have already seen in their children are giving them hope. "A year ago, I had no idea what life would hold for Simon," says Jane. "Now I feel the future is promising." * Pupils' and parents' names have been changed to protect their identities.

Where to go for help and advice

Today Southlands launches a new information and outreach service on autism and Asperger Syndrome, OAASIS, (Office of Autism and Asperger Syndrome Support and Information Service) based at the school. Teaching packs and an outreach service to professionals will also be available.

OAASIS also welcomes personal visits for those who wish to use its reference library or to talk to someone face-to-face. Initially, it is being funded by the Hesley Group, which runs nine independent residential special schools, of which Southlands is one.

For further information, please contact Mrs Lesley Durston, OAASIS coordinator, on 01590 677237 or write to: OAASIS, Southlands School, Vicar's Hill, Boldre, Lymington, Hampshire SO41 5QB.

* The National Autistic Society can be contacted at 276 Willesdon Lane, London NW2 5RB. Tel: 081 451 1114.

* The West Midlands Autistic Society (affiliated to the national society) has developed a training pack for teachers and support assistants working with autistic children in mainstream and special schools. The pack, "Children with Autism and Asperger Syndrome in School", costs Pounds 25 and is available from: The West Midlands Autistic Society, 17b Fellowslane, Harborne, Birmingham B17 9TS. Tel: 0121 426 4225

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