From the first day of his life Ben was "different", but for the first two years the differences seemed to be positive ones. He was a spectacular baby. Grannies, health visitors, pram-peerers in the street, all commented on his extraordinarty alertness. He stood alone at seven months, walked unaided at nine. By 18 months he knew dozens of rhymes and stories by heart, could identify every colour and knew most of the letters of the alphabet. We were delighted, and complacent. When you have a child who can sing, tunefully, every verse of "Good King Wenceslas" before the age of two, you don't tend to look for problems.
With hindsight, one can identify gaps. Ben didn't call our attention to things. He never offered anyone a toy nor did he mind if another child took his. He showed no curiosity about our activities, and never copied our actions. His language was nearly all echoed from stories or from adult remarks. He didn't babble, and he had no baby words. He applied his quotations to appropriate situations - "And there in the doorway stood a huge green alligator," he said, looking at our stout cleaning lady wearing a green dress - but he rarely put words together to form sentences of his own.
At the age of two, his progress slowed right down. He became extremely shy, and seemed afraid of people of whom he had previously been fond. Rather than ask for what he wanted, he would point and grunt; he spent a lot of time in a world of his own, gazing up at trees and muttering. Toys were never put to their intended use, and he didn't know how to play with other children. He slept very little. Potty training was a non-starter.
At first, we put this behaviour down to the arrival of a little brother, Sam, when Ben was 22 months old. Ben was always fascinated by and devoted to Sam, but, we reasoned, he was taking out his jealousy on the rest of the world. At three he started nursery school, where valiant efforts were made. To some extent he enjoyed school but the gap between him and the other children was clear. "What does he like doing best?" I asked the teacher. She paused for a minute. "Rolling on the floor," she replied. In photographs at this time he is almost never looking at the camera.
After the diagnosis, our feelings were mixed. There was some relief; the fact that at age four he was still in nappies and failing to sleep through the night wasn't simply due to bad parenting! There was also, of course, enormous anxiety; I never realised before how valuable normality is. The fear that one's child may never sustain normal relationships or even be tolerated by other people is harrowing.
The condition was first described by the Viennese psychologist Hans Asperger in 1944, but was not widely known in this country until recently; Asperger's work was only translated into English in 1991 by Uta Frith. Asperger himself regarded his cases as high functioning autists, but there is now some debate as to whether the syndrome should be seen as a variant of autism or as an independent condition. Rigid definitions are simplistic, but it does seem that whereas the true (Kanner syndrome) autist has little or no desire to make contact with other people the Asperger individual desires the contact but does not understand the rules that govern social behaviour. Another area of difference is that while the Asperger individual is physically clumsy (Ben isdouble jointed and cross lateral) the Kanner autist is not necessarily so.
The causes of the syndrome are uncertain, but it does seem to be genetically linked. Asperger observed that the families had usually had intellectual leanings for several generations. It is far more common in boys than in girls, indeed Asperger thought that the condition could almost be seen as "extreme maleness." The characteristics can often be seen in a modified form in the child's father. There is no medical alleviation and no "cure" but through skilful management and education much can be achieved.
Seventy six per cent of Asperger individuals have special skills and talents, which may ocasionally amount to genius. Claims have been made that great men as diverse as Wittgenstein, Kafka, and Bartok had Asperger syndrome characteristics. Asperger himself stresses the impressive contribution that his patients could make to society even after a stormy childhood and adolescence. Certainly such talents challenge our assumption about what people "ought" to be or do; the boundary between acceptable, ev en admirable, eccentricity, and outright disability, is a hazy one.
We are lucky in that our son's specialities are attractive ones. He sings beautifully; he adores poems and stories - though his comprehension of their meaning is limited - and he is intensely responsive to nature. He composes spoken "poems" about weather, water, moonlight, plants; he is never happier than when out of doors, barefoot and preferably naked. There are some advantages for a parent in having a child who would rather watch dust motes in sunlight than Power Rangers, and who lets me know that hewants to visit the pond by saying: "The water lilies have opened their eyes now." When I complained to a friend that whenever Ben was asked what he wanted for Christmas he replied "aphids", my friend said: "Count yourself lucky. In this house the campaign for a Glitter Barbie was launched in August." If Ben wants to talk to blackberries or go to bed with a pile of socks, I don't really mind.
The question of education for Asperger children is a difficult one. In a mainstream school such children are easy targets for bullying and teasing. They have little ability to defend themselves other than by uncontrolled outbursts of physical aggression,and they may not be able to explain what is happening to a sympathetic adult. On the other hand their IQ is usually average or above; special schools might be successful in teaching "life skills" but would perhaps be unable to cater for their intellectual needs. With some trepidation we decided that Ben should join the village primary school. His first term has been - from his point of view - a great success; he loves the company of the other chidren, even if he can't follow their games, and they are wonderfully tolerant of him.
Having a diagnostic label has helped; without it he would have been seen as a naughty or disturbed child. As it is, his teachers regard his presence in the school as a challenge, and have gone out of their way to help him integrate with the others. His "statement of special educational need"; is now complete, and he should soon be receiving ancillary help for two hours a day. But as children get older, their tolerance decreases. What is amusing in a four-year-old may seem very different in a teenager. And as Ben himself gains awareness of the world around him, so he may come to understand, and dislike, his own failure to fit in.
Very little is known about the Asperger individual in later life. While most develop sufficient social skills to hold down a job, the incidence of anxiety and depression seems to be high. What is clear is that as the Asperger individual has unusual difficulty in understanding society; the onus is on society to try and understand him.
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