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Growing pains

John Anderton on the trials his autistic son faced to stay in mainstream schools. Our 13-year-old son Matthew suffers from Asperger syndrome, also known as "able autism". Autistic people, broadly speaking, are socially withdrawn and suffer from varying degrees of communication impairment, with some never developing speech. They are obsessive and commonly cling to rituals for comfort and security. Autistic children typically do not play imaginatively and instead tend to repeat the same, often laborious, activities.

However, in the more able autistic person, these abnormalities may not be immediately apparent which may explain, to some extent, the confusion surrounding Matthew's early problems with schooling.

Although he displayed some abilities in advance of his age, particularly in mathematics, his progress was severely marred by an apparent failure to relate his academic skills to the outside world or transfer them legibly on to paper. These problems, however, were soon overshadowed by the trauma he was to suffer as a result of his lack of basic communication skills.

Alone and seemingly lost in the social swirl of school life, Matthew was a solitary figure in his reception class and through his early primary years. Inevitably his aloofness, coupled with his sometimes odd behaviour, singled him out as a target for bullying. He gained a reputation as being something of a clown. His oddball behaviour and unpredictability became a source of entertainment for his peers and frustrated his teachers, many of whom recognised his ability but had their efforts to nurture it constantly thwarted.

When Matthew began to exhibit aggressiveness, this frustration gave way to deep concern, with us, as parents, being warned at one point that Matthew could be expelled. It wasn't realised at this time that this aggressiveness was borne of his overwhelming frustration at not being able to communicate his needs. Sometimes he felt unable to ask to go to the toilet, so it wasn't unusual for him to wet himself.

Outside professionals became involved shortly after Matthew started school, but these early discussions with both educational social worker and psychologist were not fruitful. The most popular opinion was that our parental anxiety was having an adverse affect on him. Basically, we were told that if we stopped worrying, the problems would go away. We tried, but it was almost impossible with Matthew being so obviously unhappy at school.

A period without outside help followed: a time consisting mainly of daily battles, with one crisis rapidly following another. This was a tremendously trying time and lasted for most of his junior years. Matthew's anxiety grew and began to overwhelm him. He started chewing his clothes - reducing a sweater to a holey rag in a day - which made him look permanently dishevelled. The bullying intensified, and Matthew tried to cut himself off from everyone at school.

Matthew was not diagnosed until he was 10; any real understanding of the magnitude of his problems only then emerged. He had changed primary schools because we moved house, and was again referred to an educational psychologist, but this time progress was made. He was seen by a child psychiatrist and, after a round of tests and examinations, a diagnosis of Asperger syndrome was arrived at. With Matthew's diagnosis, a clearer picture of his educational needs emerged, and the statement of his special needs that followed provided some way forward in meeting these.

The statement favoured a supported mainstream placement which was our preference and, soon afterwards, Matthew moved up to secondary school. It was obvious that this move was to be fraught and, as expected, the problems started from day one. Much greater demands were being made on his almost non-existent powers of organisation, and his lack of social skills were highlighted more than ever. School life became a succession of lost books, forgotten games kits and missed or unrecorded homework. On its own, Matthew's statement of special needs was failing, despite the school's best efforts.

Because we have always taken an active role in our children's education - and as a result have learned a great deal about how schools function and the difficulties faced by them - we have always been acutely aware that there is a limit to the demands that we as parents can make.

The statement of special needs, despite being a legal document, has never, in our experience, served as some magical means of obtaining resources. And because autism is so difficult to define and diagnose, autistic children can fare particularly badly.

In Matthew's case something else apart from his statement was needed - a three-way link between Matthew and home, school and specialist help. This link arrived in the form of Malcolm Stevens, a teacher from Solihull's pupil support service.

Malcolm was introduced to us just before Matthew's move to secondary school. One thing we suggested, very quickly, was that teachers needed help in understanding Matthew's vulnerability and his unique problems. For instance, his apparent inattentiveness in class can be misleading. Although it often appears that he is distracted, he is usually listening quite closely and retains facts well.

We know that teachers need help faced with 30-plus other pupils, an Asperger syndrome sufferer can be too much to cope with.

Malcolm had no prior experience of autism, so helping Matthew was a learning process for him. This in fact encouraged the partnership to grow. Between us we devised strategies to meet Matthew's basic needs.

A very basic requirement surfaced immediately - a map of the school. And Matthew's organisational difficulties were tackled by custom-designed checklists and diaries aimed at helping him to assemble all he needed for the school day.

In common with many sufferers of Asperger syndrome, Matthew has a low stress threshold, and it doesn't take much to tip him over the edge. So, the provision of a bolt hole and a trusted teacher was another early requirement. This provides him with somewhere he know he can go, and someone to talk to if he feels he is in a situation he can't cope with.

Some teachers feel that Matthew being able to leave lessons erodes some of their control, but for the Asperger child it is a vital safety valve. Matthew can now identify a genuine crisis approaching, and as a result rarely does walk out. Before he had a bolt hole, he would often become highly distressed over relatively minor things and would race blindly from lessons with nowhere specific to go - obviously unacceptable beahviour in school.

He now completes a mood diary, a chart on which he can indicate how he has felt during the school day. The options range from very happy to very sad - a smiley face compared with a miserable one. By doing this, Matthew is being asked to think about how he feels and why, which hopefully will help him to see problems in proportion and therefore help him in his struggle to control his fragile emotions.

It can be difficult to assess accurately Matthew's true feelings about his progress in school, since many of his opinions are deeply subjective. One effective way of combating this has been to ask him to assess things on a scale of one to ten - utilising his fascination with numbers helps him to view things more objectively.

Matthew is now in his third year in secondary school at Lode Heath School in Solihull, West Midlands. Things don't always run smoothly - difficulties still arise at fairly regular intervals but we are, as often as not, able to devise some sort of plan to cope with the problem.

Currently Matthew is spending one day a week at a local special school to give him a respite from the social pressures which arise in mainstream. Whether this proves to be of benefit remains to be seen. It is, however, a good example of the way in which coping strategies evolve over time.

The next big challenge is the transition plan that will have to be drawn up to help him into adult life. Our anxiety now is whether the help now available to him will continue post-16. Currently there is little sign that it will be.

Matthew is much calmer and, most importantly, happier at school. He says he now has friends he never thought he would have. He no longer wanders around alone at breaktimes; instead he plays football with other boys.

* The National Autistic Society, 276 Willesden Lane, London, NW2 5RB, can provide information on all aspects of autism and Asperger syndrome. It can be contacted on 081 451 1114.n The West Midlands Autistic Society, (affiliated to the national society) is preparing a training pack for schools on educating autistic children in mainstream schools. It can be contacted on 0121 426 4225

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