Misunderstood and removed from mainstream schools, pupils with Asperger Syndrome have been thrown a lifeline, write Kay Smith and Neil Munro.
Edinburgh is beginning to mount a serious assault on communication disorders - and Kaimes School in Liberton is one of the vehicles for this drive. Formerly specialising in visual impairment, Kaimes has now been redefined as a centre for 70 youngsters with "severe, complex or pronounced" learning difficulties, of whom 7 primary and 11 secondary pupils suffer from AspergerSyndrome, a form of autism.
Alex Wood, headteacher, says the school caters for children "who have the potential to cope with a mainstream curriculum but not in a mainstream setting".
The children are taught in small classes, with auxiliary support, by teachers trained in dealing with Asperger children. They are also provided with a tightly structured day which ensures as little change as possible. Obsessional interests, a classic feature of autism, are acknowledged and used as a vehicle for learning the basics, while emphasis is placed on social-skills training.
Mr Wood said the aim is to provide Asperger children with a safe and secure environment without which they may display disruptive behaviour which "would mean them being out the door very early on in a mainstream school".
Parents are invited to visit Kaimes, meet its staff and decide whether they would like to send their child there. Before they can, however, a recommendation must be secured from the education authority's professional assessment group. This multidisciplinary team - likely to consist at least of an educational psychologist, headteacher, and community child health specialist - considers each case on its merits, taking account of the view of parents as well as professionals. Applications are normally considered in February and the results made known in April.
It is estimated that nearly 4,000 children under the age of 16 in Scotland are affected by Asperger Syndrome; the condition may strike as many as 50 out of every 10,000 people, a potential 25,000 in Scotland. Autism affects four times as many boys as girls.
According to a survey commissioned by the National Autistic Society, published at the end of last year, it is a condition little understood by the public - as many as 96 per cent out of 979 people interviewed claimed never to have heard of it. According to carers, there is a similar lack of awareness among professionals, resulting in a seemingly endless fight for public services. The Lothian Asperger's Support Group, which meets regularly in Edinburgh, aims to provide a social if not an educational lifeline.
Susan Wright, a member of the group, managed to secure a place at Kaimes for her son, Scott (who also has learning difficulties not directly related to the condition). Asperger children are characteristically easily upset, particularly when in groups, and they dislike changes in routine. These traits, together with eccentricities such as obsessive interests and an awkward gait and mannerisms, open the children to bullying.
It was for that reason that Mrs Wright was forced to remove Scott from a mainstream primary. "At school he would hide his feelings, but when he came home I got the full works: the foetal position, screaming, flapping of hands and the obsessions," she said.
Although Asperger Syndrome children have average or above average intelligence, they take everything literally. Nor do they pick up on body language and facial expressions.
The parents' experience often represents a catalogue of trial and error as they search for the correct diagnosis from the medical profession - and the most suitable schooling for their child. Parents of older children, in particular, appear to have had the toughest time. But the opening of new doors at places such as Kaimes and Craigentinny is the breakthrough they have been looking for. There is more general awareness as well: Brian Adamson said his five-year-old son's problems were spotted at nursery school and a referral for a diagnosis quickly sought.
Leith Academy has now begun making some additional support to allow autistic children to participate in the curriculum. And the Lothian support group says some parents are finding understanding primary school headteachers, who can ensure sympathetic handling and appropriate extra support within a mainstream school. Parents regard this as a lifeline.
All of which is music to the ears of Edinburgh's education department which stresses the importance of all schools having an awareness of pupils' communication difficulties. "We try as far as possible to support autistic children in their neighbourhood school," said Martin Vallely, the department's professional services manager. "That is the first port of call. Provision such as that being developed at Leith Academy is an additional resource."
Edinburgh expects its special schools to offer a range of provision including autism. Kingsinch in Gilmerton and St Crispin's in Newington have been taking part in training and development work which the authority hopes will be spread more widely.
The department has also appointed Alison Pugh as an outreach teacher, working with schools and teachers whose children exhibit "significantly challenging behaviour". That includes autistic youngsters who are distressed and unable to cope at school.
But, despite these developments, parents refuse to be complacent. The support group is planning to develop its campaigning role. Mrs Wright draws the lesson from their experience that "those who shout longest and loudest" are most likely to obtain the correct education for their children.