Incidence of autism is increasing but some mainstream pupils suffer through a lack of awareness. Jessica Werb reports on their cries for specialist help
Last month, a disturbing story emerged in Edinburgh; 13-year-old Dominic Falconer, a pupil at St Augustine's High, was reported to have been driven to six suicide attempts after persistent bullying at school. Dominic shows symptoms of Asperger's syndrome, a form of high-functioning autism that causes language, social, and speech difficulties.
The story of destroyed self-confidence, depression and angst sent shockwaves through the local community and a public anti-bullying campaign was launched by the Edinburgh Evening News, supported by the city council. But cases of children with Asperger's syndrome being misunderstood are far from isolated.
Rates of autism are widely recognised to be escalating throughout the UK. A study published in May by the Autism Research Centre at Cambridge found as many as one in 175 primary schoolchildren may suffer from autism, which used to be thought to affect only one in every 2,000 children between the ages of five and 11. In Scotland, the figures suggest an almost 20 per cent rise in autism cases in the past year, with 778 children now diagnosed.
Scotland is seeing record numbers of children with autism spectrum disorders being sent through its educational system. While a diagnosis of severe autism, for the most part, ensures that special schooling and support is put in place for the child, diagnosis of Asperger's syndrome often leads to a different scenario.
Because children with Asperger's appear verbally competent and often excel academically, many are placed in mainstream schools, where they make an easy target for bullies because they suffer from social and communication difficulties. These children can seem odd; taking remarks over-literally, they can have trouble relating to their peers or understanding play; some are clumsy and have co-ordination difficulties.
Now parents are beginning to fight against mainstream schooling, arguing that their children would be better served in highly-specialised units.
Lorraine Dilworth is a parent of a 17-year-old Asperger's sufferer. Three years ago she set up Independent Special Education Advice to provide help and advice for parents of disabled children.
"We've had a number of parents who have withdrawn children from school because things have got so bad in mainstream education," she says.
"Children with Asperger's are different and they stand out like a sore thumb. Other kids don't understand it and they are a prime target for bullying. We have had a number of children across Scotland who have threatened to take their own lives."
She says the problems usually become more severe in secondary school, where routines are different and support systems are not always in place to the satisfaction of parents.
"If there is support there, and a system, that's fine but we usually find that the support system is not there. Some children need speech and language therapy, some need occupational therapy. At secondary school much of this is just not available."
Dominic Falconer's problems began in secondary school.
"It all started in his first year of secondary," says his mother, Eileen. "People were calling him names and it moved from name-calling to stealing his gym clothes. He was pushed down a flight of stairs, kicked and punched and spat on. The authorities would tell me that Dominic was provoking this."
Despite the difficulties Dominic has encountered in school, Mrs Falconer does not want him withdrawn from the system as he is doing well academically and she hopes that with proper support he will adjust. But she adds: "If I had another child who was autistic, I would never send him to mainstream schooling. I feel mainstream has let Dominic down in so many ways, but I feel it would be a shame to move him now."
The theory of integration of pupils with disabilities into mainstream schooling, encouraging students to respect each other's differences and learn from one another, seems like a good idea. However, Ken Aitken, an Edinburgh-based clinical neuropsychologist and international expert on autism, explains why it may not be ideal for autistic children.
"The argument in favour of mainstream placement is to do with having more appropriate peer models and learning through imitation," he says. "But what you find with people with Asperger's syndrome and high-functioning autism is that they have problems with imitation.
"They are more likely to learn if they are placed in a peer group of similar children where they can see someone with the same difficulties as them achieving things.
"It is difficult for them to relate to children who do not have the same problems as they have. There is a very high rate of depression in adolescents with Asperger's because they become acutely aware of how different they are. It's not uncommon for them to attempt suicide."
A spokesperson from the National Autistic Society says: "For some children with autism, the mainstream environment can be terrifying and confusing, with things appearing to happen at random and in unexpected ways. This leads to distress for the child and disruption for the school.
"Higher functioning children with autism, including those with Asperger's syndrome, whose social difficulties make them vulnerable to bullying or abuse, need support and guidance to prevent them from becoming increasingly isolated in the mainstream environment."
Supporting Dr Aitken's argument is the experience of Lucie Howson, daughter of the artist Peter Howson. Moving from the mainstream to a specialist school has done the 15-year-old Asperger's sufferer a world of good, says her mother, Terry.
Lucie went to Hillhead Primary in Glasgow, where she was diagnosed with Asperger's at the age of 10. She then spent two years at a special unit at Hillpark Secondary in Glasgow before transferring to Alderwasley Hall School in Derbyshire, an independent special school, last September with funding from Glasgow education services.
"All the gains that Lucie made at Hillhead Primary were lost within a matter of weeks of going to secondary school," says her mother. "Halfway through her second year, Lucie became uncontrollable and desperately anxious. She was battering herself against walls and would scream for seven hours at a time. But within two months of being at Alderwasley I saw changes. Six to seven months later, I have a different child."
Sandy Fowler, president of the Educational Institute of Scotland, believes that more training for teachers would be appropriate but not widely possible at the moment.
"There are huge resources required to train every teacher and sometimes children would be better placed elsewhere with the concentration on specialist teachers," he says.
The Scottish Executive points out that it gave pound;178 million in grant-aided expenditure to local authorities for special educational needs in 2000-01. This included pound;6.5 million for local authorities to procure speech and language therapy services for pupils with a record of needs.
A spokesman for the Executive says: "Responsibility for provision of education, including provision for children with autism, rests with education authorities and it is for them to determine what part particular strategies and facilities should play in discharging this duty."
Without proper support and therapy, children with autism spectrum disorders can develop problems into adulthood. Statistics from the disability support organisation Into Work indicate that an adult with an autism disorder who is unsupported in terms of education and employment will cost the Government pound;750,000 in their lifetime, compared to pound;250,000 if they are supported.
The City of Edinburgh education department has numerous provisions in place to support autisic children, as well as forecasting studies to meet the increasing needs of 40 new cases a year in the authority.
However, parents such as Mrs Falconer are still concerned that children are slipping through the net. "A lot of people have contacted me to tell me that they are having the same problems with their kids that we had with Dominic," she says. "Schools have got to sit up and make things different for these children."
National Autistic Society, tel 0141 221 8090Independent Special Education Advice, tel 0131 454 0082. Into Work, tel 0131 475 2369. The support organisation includes Moving into Work, an employment consultancy for over-18s with Asperger's syndrome, tel 0131 475 2600