‘Did that man touch our car?’

Elisa Segrave

My name is Nicholas. I am 11 years old. I like plants because they have a different life to humans, and they are attractive. They can’t defend themselves and, instead of having blood, they have chlorophyll. They can’t move. They grow towards the light. I feel proud when my plants do well.

I am afraid of dragonflies. I am afraid of jellyfish. I wish blackfly would leave my plants alone.

From babyhood, our son Nicholas regarded other children as a different species. As a toddler, he sat on my knee and showed no interest in playing with my friends’ children. I just thought he was shy and had a different character from my extrovert daughter, who is two years older. At the end of his first term at nursery school, his teacher told us she was worried that there was ‘something wrong’ with him. In the classroom, she said, he held his hands over his ears and screamed. If he did something naughty, he was put in the corridor, but he seemed to prefer being on his own. ‘I don’t like them,’ he said when 1 asked what he thought of the other children, and he imitated their high little voices. He wasn’t interested in toys, or in any kind of play that involved make-believe, though he liked to imitate conversations that had taken place between other people, and would repeat them again and again. He was, and is, a superb mimic (and can faultlessly hum a complicated tune he has heard only once).

His first ‘obsession’ started when he was two; it had to do with balloons. He looked for them everywhere, and when he saw one he always wanted to have it, even if it was one of the huge advertising balloons that sometimes hover over London. He sorted them into categories, giving them peculiar but logical names. ‘All March Down the Room’ party balloons made a squawking noise as they whizzed across the floor; ‘Fish’ balloons, made of helium, were shaped like fish; ‘Da da da da da’ balloons were ordinary round ones. The adored objects seemed to give him as much pain as pleasure. Well-meaning friends brought him packets of ordinary plastic balloons but initial delight would usually end in agitation and misery. He would scream at the adult to blow up the balloons, tie them, blow them up bigger, attach a string, pop them, rescue them from the ceiling. As he grew older, he blew up the balloons himself but ultimately became frustrated by this activity as well. At three, he was finally coaxed onto the stage of his nursery school’s Nativity Play by being given a light blue balloon on a string. In the school photograph we see him holding his talisman: he looks distant, other-worldly, as if in a dream. Lorna Wing writes about this other-worldliness in The Autistic Spectrum: [*]

It seems likely that there were children and adults with autistic disorders in all their manifestations long before these conditions were recognised and named. Perhaps they were the reason for the ancient legends of ‘fairy changeling’ children, in which fairies were believed to steal away a human baby and leave a fairy child in its place. In some versions of the story the changeling was remarkably beautiful but strange and remote from human kind.

After the worrying conversation with the nursery school teacher in January 1987,1 wheeled Nicholas home in his pushchair. Then I sat on his bed looking at him. He sang a song about a boy and a bird. I asked him if he had learned it at school. He said no, he had made it up. ‘Surely,’ I thought, ‘if he can make up a song with its own words and its own tune at the age of three he can’t be that stupid?’ Over the next few years, Nicholas’s father and I often felt that our son’s difficulties must be our fault, that we must be doing something wrong. (We also hoped that there might be a miracle cure, if only we could find the right person to take him to.) Lorna Wing firmly refutes the idea that ‘bad parenting’ is responsible for autism, although 26 years ago, when her book was first published, ‘the theory that autism was due to a cold, mechanical style of parenting was still strongly held by many professionals.’

Wing also writes about Asperger’s Syndrome as being another ‘pattern’ of autistic behaviour. It was first written about by an Austrian, Hans Asperger, in a paper published in 1944 – and translated into English thirty years later. Wing reports that

the features he selected as important were naive, inappropriate, social approaches to others; intense circumscribed interest in particular subjects such as railway timetables, good grammar and vocabulary but monotonous speech used for monologues, not two-way conversation; poor motor co-ordination; level of ability in the borderline, average or superior range but often with specific learning difficulties in one or two subjects; a marked lack of common sense. He noted that the parents did not observe any abnormality until the children started school.

Nicholas had been seeing a child psychoanalyst three times a week for five years; he’d also seen a speech therapist, a clinical psychologist, various teachers of ‘difficult’ children, a paediatric neurologist, and many other professionals, both NHS and private, when a friend suggested that he might have Asperger’s Syndrome. His nephew, who, after a difficult adolescence, is now doing a doctorate in theoretical physics at Oxford, was diagnosed with it several years ago. My friend urged me to phone the young man’s mother. For the first time I was able to discuss Nicholas’s bizarre behaviour with someone to whom it seemed familiar. The woman asked whether he had difficulty eating with a knife and fork. (He was then nine.) Could he tie his shoelaces? I realised that his clumsiness and stubbornness might be things he couldn’t help. I cannot exaggerate the importance of this realisation in reducing my own feelings of isolation and confusion. ‘Is there not a danger of harming someone by giving them a diagnosis and causing problems that did not exist before?’ Lorna Wing asks, and quickly answers her own question: ‘This is a theoretical rather than a practical dilemma. In clinical work, the primary reason for making a diagnosis of an autistic disorder is that the individuals concerned are experiencing major difficulties in development from infancy to adult life and their parents, or occasionally the persons themselves, are asking for help.’

Wing runs Elliot House, a Centre for Social and Communication Disorders in Bromley. Her expertise is much in demand – I finally managed to get an appointment at Elliot House for my son through my local GP, after waiting in a queueing system for eight months. Nicholas was diagnosed last month, on his 13th birthday, as definitely having Asperger’s Syndrome. The diagnosis has made us more hopeful. He and I recently met a young woman who was diagnosed with the syndrome only last year, at the age of 21. She says that if she had known before she would not have worried about being ‘psychotic’, ‘emotionally traumatised’ or ‘weird’. She would have been able to accept that she had to make an effort to learn social rules, like an anthropologist in an alien society, rather than feeling inadequate because she could not absorb them intuitively, as everyone else seemed able to do. She says she wouldn’t choose to be ‘normal’. ‘What’s so good about “normal”?’ she asks.

In her book Wing is reassuring, but never falsely optimistic. She makes it clear that, as yet, there is no ‘cure’ for autism, and she sets out, with pleasing clarity, to try to cover all its aspects: the possible reasons for it, the work being done. The latest research suggests that the limbic system and the cerebellum are involved; and there has been interest in hormones, such as oxytocin, that affect early brain development.

In the last few years, alone in the house with my two children, I have sometimes felt I was living in a mental home or in a book by Lewis Carroll. One of the most alarming of my son’s obsessions, which continued for several months last year, was his conviction that his sister was tapping on his bedroom wall, even if she touched it lightly by mistake. If I stopped my car at a zebra crossing on the way to his school, he would stare at the pedestrian and ask, with mounting anxiety: ‘Did that man touch our car? He touched our car, didn’t he?’ When I slowed down at traffic lights, he would demand that I wind up the window, convinced that strangers several yards away could hear what we were saying.

Lorna Wing explains why these sorts of phobia might arise:

People with autistic disorders ... may be unaware of the boundaries between objects that to others seem so obvious ... They lack an internal structure for their lives. They need to have an external framework constructed for them by those who care for them and teach them. The most successful find it for themselves in the work and living arrangements they choose but even they are vulnerable if the structure is completely removed by the hazards of life.

Nicholas is calmer than before, thanks mainly to the methods of the new special school he is attending, which does not specialise in autism but sets down simple routines and techniques to help ‘train’ both parents and children. (It also emphasises the importance of praising the child: my son often feels inferior and demoralised, particularly if he has been called ‘odd’, or even ‘brain-damaged’, by his peer-group.)

Although calmer, he still panics if he is interrupted in the middle of an ‘obsession’, or if he feels he has not had sufficient warning of a disruption to his routine. His present craze (after two years of growing house-plants, studying them, drawing and painting them, and often becoming very distressed at the thought of their dying) is his radio. He records pop songs and spends hours lying on the floor of his bedroom, neatly cutting up paper to make labels for the tapes. He painstakingly writes out each song-title with a fountain pen. When I go to tell him supper is ready, or that it is time for an appointment, he sometimes springs abruptly to his feet and bites the area of his right hand behind his thumb and forefinger so hard that there is now a scar and a permanent lump.

Some autistic people have more extreme repetitive habits than my son’s. Hand or arm-flapping is common. At an all-day conference on Asperger’s Syndrome which I attended earlier in the year, a psychologist, Patricia Howlin, talked about the difficulties experienced by adults with Asperger’s Syndrome when they try to fit into everyday life. She told us about one man who travelled to work on the Underground every day. If the train stopped unexpectedly between stations, he panicked and began jumping up and down and flapping his arms, alarming the other passengers. As an instance of Asperger’s rigidity, she talked about a man who hit a cloakroom attendant for giving him the wrong coat – and saw no reason why he should apologise. Nicholas has for years shown a similar inflexibility in his hostility towards younger children. His dislike seems to him justified simply because, in his words, ‘They’ll live longer than me. No amount of reasoning, even when I say that people die at different ages, can persuade him otherwise. Lorna Wing advises parents not to ‘become angry or emotional’. In my worst moments, before I had understood my son’s condition, I have said to him, in despair: ‘You’ll drive me into the grave!’ On a nature week near Box Hill last year, he was so intractable in his hostility to a younger child to whom I had given a sticking plaster which he wanted, that I chewed up one of his smaller plants and spat out the pieces. Nicholas seemed excited by the evidence that I was at the end of my tether, and also impressed that I had done something so assertive to show my disapproval of his behaviour.

Nicholas fits loosely into the category which Wing describes as ‘active but odd’: ‘Active social approaches cover up the fact that they have no real understanding of how to interact socially with other people ... They have all experienced many failures in social interaction and are sensitive to the laughter and scorn of their age peers when they behave in a naive way. Some develop a paranoid attitude as a result.’ Recently Nicholas was sure he had been insulted by a younger child in our local swimming-pool. (According to him, the child had said either: ‘Hello Buster’ or ‘What are you looking at, Buster?’) For the rest of the session, Nicholas made odd gestures and faces through the glass partition at the children next door in the baby pool. The next day, he went back to the big pool and behaved normally, though when he got out he claimed that the same child had been there again and had insulted him.

Lorna Wing talks of children with ‘autistic features’ lacking imagination and adds: ‘the knowledge that other people have thoughts and feelings is also considered absent to a greater or lesser degree with autistic people.’ Last week Nicholas and I were looking through some old photographs. There were some of my mother shortly after her mother remarried. In all these snapshots, my mother looks very serious. My son, who isn’t fond of my mother, stared at the photographs then said, with absolute conviction: ‘Your mother was away from love. Face it. Gladys’ – my grandmother, whom I adored – ‘wasn’t very nice to her daughter.’ Not long afterwards, an old lady who has known my mother all her life confirmed what my son had intuited: that my grandmother, a young widow, had not paid enough attention to her only daughter, and my mother, for much of her childhood, had had to endure the jealousy of her stepfather. Nicholas can make this sort of leap yet, at school recently, he was hesitant about a remark that a boy of his age had made to him. During break, my son explained, the other boy had climbed out of a school window into the garden. My son had then tried to copy him, but was less agile. ‘Put your foot there!’ the boy had advised. ‘Was that remark friendly?’ my son wanted to know, two hours later. I assured him that it was.

[*] Constable, revised edition, 240 pp., £16.95. 25 March, 0 09 475160 9.