by Tom Cutler
*
It was while I was exploring the Aladdin’s cave of Asperger’s syndrome that I came across the details of Sarah Hendrickx, who was giving a lecture to the UK’s National Autistic Society. Sarah is an experienced diagnostician and consultant, but she is more than that: together with her academic qualifications she brings to the job a unique sort of understanding because she has Asperger’s syndrome herself. That she worked just along the railway line from me was an unexpected bonus, and I had dropped her a note to make an appointment.
Taking a slip of paper from my pocket, I refer to the directions on it: Take left, follow street till reach big pub with green roof. From there follow nose to SH’s office.
After a few minutes walking I spot the street I’m looking for. I’ve been told to pass through a tall gate, taking care on the other side not to approach the door on the right but to ring the bell beside the door straight ahead of me. These instructions suit me well. They have plenty of specific detail and no ambiguity.
I glance at my watch. Just as I intended, I am forty minutes early. I feel extremely uncomfortable arriving late for anything: a meeting with a friend; a train; a dinner; a film showing. I cannot go into a film if the adverts have started. Because of my twitchiness I often find myself arriving an hour early for an appointment, having caught the train before the one I was supposed to get. But today these forty extra minutes will prevent my being late and also allow me to plan and manage my arrival.
Having identified the office, I smartly pass it by, crossing over the road towards a small park, where I sit down on a bench beside a pole-mounted receptacle intended for dogs’ excrement.
A magpie lands on a nearby branch. The magpie is a highly intelligent bird: the only non-mammal which can recognise itself in a mirror. Although I have a rational distaste for superstitious mumbo jumbo, I also have an irrational suspicion of lone magpies, for, according to the nursery rhyme, one magpie is for sorrow. I feel my heart quicken. Is this bird a bad omen? Superstitions of this sort, I’ve read, are common in people with Asperger’s syndrome.
I scan the park, as is my routine, in the hope of finding a second magpie. I spot one lurking among the copper beeches. Like a placebo pill, this second bird relaxes my anxiety. Two for joy: that’s a relief.
How can a logical, rational, and clear-headed sceptic like me be alarmed by such utter tosh? For years I have deliberately walked under ladders and opened umbrellas indoors to show myself what I think of this kind of superstitious rubbish, but a single magpie still makes me jump. It is one of my secret horrors.
I look at my watch and have to look at it again to see what the time is. My meeting is in sixteen minutes. I leave the park and nose around the area for ten minutes or so. A man in a fluorescent vest is getting out of a council vehicle. From the top, a long, cantilevered arm swings a concertinaed pipe out towards a drain, like a great elephant’s trunk preparing to suck up a drink. As a child the noise of these drain suckers used to terrify me.
I go into a corner shop, where I buy something small. I come out and walk among the clumps of suburban housing. The street furniture is painted in a variety of murky greens. In the distance the crown of a wooded hill rises above the bungalows. Many of the lawns and flower beds around here have been replaced by tessellated grids of cement bricks on which sit gigantic cars of various colours. One front yard has subsided in the corner, causing an eerie disintegration of the pattern of interlocking tessellations. This bothers me.
I pass a house with a Mon-Repos-type sign next to the front door. The Dogs Danglies it says. I note the missing apostrophe. The sign’s substrate is a thinnish piece of brushed steel with the characters printed on top in a curly brown script intended to resemble brush-drawn letters. But it’s been done by machine. In a high window, I see a child’s mobile rotating slowly. I watch it closely for a minute. It is only later that I discover the autistic penchant for spinning objects.
I check my watch. My appointment is in six minutes so I retrace my steps, adjusting my stride to arrive back at Sarah Hendrickx’s gate precisely twenty-five seconds before my appointed time. I ring the bell with eleven seconds to spare.
The door is opened by a smiling woman who looks a few years younger than me. If she’s got Asperger’s syndrome you’d never guess it. Of course, you can’t tell just by looking. We go through the greeting nonsense and she ushers me up the stairs and sees me into her office. Do I want coffee? Tea? I should make myself at home.
I look around the comfortable room and spot several books with titles like Asperger Syndrome and Alcohol: drinking to cope?, Asperger Syndrome & Employment, and NeuroTribes: the legacy of autism and how to think smarter about people who think differently. I take this one down. It is a big fat book by a person with the name Steve Silberman. Its cover is decorated with a grid of twenty-five small rectangles in two different blues. Lost among the rectangles is the book’s long subtitle, being four lines of condensed capital letters printed in three different colours, one for some reason upside-down. The author’s name is at the head and, below it in a fourth colour, the name Oliver Sacks: the man who wrote the foreword. The cover is further confused by a badge showing that the book has won some sort of prize. I find honours and prizes distasteful, though when I later come to read the book’s five hundred and ninety-two pages I discover it to be a work of art. All the same, the overactive design is not something I imagine anybody with Asperger’s syndrome wanting to look at.
Sarah comes in with the tea and I plonk myself down on the sofa. There is a small circular table for my use, on it a glass of water. I notice that many tiny bubbles have settled on the wall of the glass. This tells me that it has been sitting here for some while. Clearly Sarah prepared for my visit in very good time, possibly even before I started my own mental preparations in the park, forty-odd minutes ago.
‘You found me all right then.’
I recognise that this statement of the obvious is intended to start the ball rolling. I daresay Sarah has learnt to do this, just as I have learnt to respond with a trite confirmation.
‘Yes,’ I say.
There is plainly no exchange of information going on here. Nobody is learning anything they didn’t know before, but I have come to understand over the years that a conversation of this sort is not about information exchange. It has instead an important social function, like the discussion of the weather by two old men at a bus stop. People call it ‘chitchat’, or, if you start a conversation with it, ‘breaking the ice’. I have absolutely no natural small talk of this sort, and though I have learned to imitate what other people do on these occasions, and can sometimes give a plausible impression of being almost as capable of idle prattle as anyone else, I feel a fraud while doing it. It’s a formula. I’m pretending to be someone I’m not again.
‘I got here forty minutes early to check things out,’ I add, sensing that ‘Yes’ was possibly not enough to qualify as full-blooded chitchat.
‘Did you?’ says Sarah Hendrickx, frowning curiously, ‘That’s not something most people would do.’
‘Isn’t it?’ I say.
Sarah gets down to business and the conversation develops over the next couple of hours, with me talking about my strange life and some of my awkward experiences, while she nods and listens. This is followed by questions that she reads off a form, and which I answer while she writes things on a sheet of paper.
‘Do you like silliness?’
‘Actually, I do,’ I say. ‘I love silliness of all kinds. Why do you ask?’
‘Oh, it’s a fairly common trait among people with Asperger’s.’
‘And normal people without Asperger’s,’ I remark donnishly.
‘Yes, and not everybody with Asperger’s. Some take the world extremely seriously. But for many there’s an oblivious disregard for pointless social conventions, a childlike curiosity, and an enjoyment of “inappropriate” activities like r
unning up the down-escalator, for example, or trying on all the hats in the shop, that kind of thing.’
This makes me think. When I worked in the office of an accountancy firm near St Paul’s Cathedral the partners used to tell me that they liked their people to have a sense of humour. But if I ever put the stapler on my head, or made a silly face or witty observation, which I sometimes used to do, I would find them looking at me as if their finger had gone through the toilet paper. Humour — what they saw as idle facetiousness — was not thought ‘proper’, no matter what they pretended.
There is a loud roaring from outside. It could be the elephant machine emptying the drains. Sarah shuffles her papers, searching for something, and excuses herself for a moment.
A hard sun is striking the furnishings, causing ranks of diagonal stripes to creep across the carpet, here climbing a chair leg, there sweeping slowly across a windowsill. I look down at my notes and see something I’ve underlined: Is Asperger’s syndrome a subset of autism? Then, underlined twice to show me it is a cardinal question: What exactly is autism? This is followed by some scribbled ‘case histories’ from the distant past, the first of which concerns a child whose strange behaviour was recorded more than two hundred years ago.
*
In 1794, or thereabouts, a French doctor named Jean-Marc-Gaspard Itard (1775–1838) told the extraordinary story of a handsome child of about twelve who was noticed living naked in the woods near Saint-Sernin-sur-Rance, a village in southern France. He seemed to have been abandoned.
The so-called ‘Wild Boy of Aveyron’ was later caught by some hunters and brought to a nearby town, where an official wrote that there was ‘something extraordinary in his behaviour, which makes him seem close to the state of wild animals’. Itard called the boy Victor.
Victor did not speak, could not understand tones of voice, and seemed incapable of learning more than the rudiments. He had unusual food preferences, and would rock himself repeatedly back and forth. Persistent food fads are common among autistics, who also find rocking, hand flapping, spinning, and leg jiggling to be soothing. In modern parlance, these calming actions are known, somewhat contrarily, as ‘self stimulating’ behaviours, or ‘stimming’.
For five years, Dr Itard tried to help Victor to talk and to become social, but till the end of his days he remained aloof, almost totally unable to communicate or make attachments. He died of pneumonia in 1828, probably in his early forties.
At more than two hundred years old, this account of what looks very much like autism is one of the earliest direct records that we know about. There is certainly no reason to doubt that the condition stretches far back into human prehistory, but the trouble is that trying to identify autism from historical writings is a game of pinning the tail on the donkey, so one has to be very careful. All that can really be said about Itard’s observations is that they are intriguing.
The real breakthrough description of autism, in the way it has now come to be understood, was made in America, in 1943, at the height of the Second World War. Leo Kanner, an Austrian-born psychiatrist, who was working at Johns Hopkins University School of Medicine in Baltimore, wrote a remarkable paper: ‘Autistic Disturbances of Affective Contact’, ‘affective’ here meaning, having to do with the emotions.
Kanner had identified the ‘autistic’ condition in eight boys and three girls. One of them, a boy named Donald, came to his attention in a letter sent by the boy’s father. In thirty-three pages of obsessive detail he explained how his son was happiest when alone, living within himself and oblivious to everything around him. He would shake his head repeatedly from side to side and obsessively spin himself or his toys in circles. When his routine was disturbed, temper tantrums would result.
Meeting Donald, Kanner observed that he referred to himself in the third person, was explosive and abnormal in his use of language, and repeated words and phrases that had been said to him. He realised that Donald, and all the children he was describing, shared features of a unique condition previously unidentified, or at least, so far, unnamed. They had almost no desire for social contact and were just not on the same wavelength as other children. The fundamental problem, he explained, was:
The children’s inability to relate themselves in the ordinary way to people and situations from the beginning of life … There is from the outset an extreme autistic aloneness that, whenever possible, disregards, ignores, shuts out anything that comes to the child from the outside … He has a good relation to objects; he is interested in them, can play with them happily for hours …
The effect of Leo Kanner’s lucid descriptions was immediate: the pattern of behaviour he had observed was recognised at once by others.
Among his assumptions, however, were some that turned out to be false. He believed that autism affected only children, but had he watched them over time he would have seen that they grew into autistic adults, and that their autism remained with them for life.
He also made little of his children’s cognitive impairments, instead singling out their ability to do puzzles, and their adroit handling of inanimate things.
We now know that something like half of all autistic people have a learning disability, and many have epilepsy or another problem from a range of recognised physical conditions. Some need full-time care, perhaps from a parent, or in a specialist institution. Autism pioneer Uta Frith has noted, however, that, despite their frequent intellectual challenges, autistic children are often, ‘remote, beautiful, and mysterious’, like those in John Wyndham’s novel, The Midwich Cuckoos.
But, the most damaging of Kanner’s assertions was the false idea that autism was a result of bad parenting, especially by emotionally cold ‘refrigerator’ mothers. Over succeeding decades, this disastrous error was to occasion enormous harm to autistic children and their grief-stricken parents. Today we know that the emotionally frigid mother doctrine is unequivocally false. Autism is not the result of incompetent or negligent mothering any more than freckles are.
In the 1940s, the long shadow of Sigmund Freud still darkened the consulting rooms of Europe’s white-coated mind doctors, and German-speaking psychiatrists fleeing the European war rhapsodically exported Freud’s curious fancies to the United States, where they took off, spawning a psychoanalysis fad that continues to this day. Gradually, however, good scientists dropped fruitless Freudian mind-reading in favour of investigations into what seemed to be going on mechanically inside the autistic brain.
Autistic brains show some intriguing features. They are physically different: the connections are different, the structure is different, various areas behave differently and look different; and sometimes they are bigger and weigh more. Post mortem autistic brains typically have many more neurones than the common brain. The brains of non-autistic people who have congenital differences in their corpus callosum — the bundle of two hundred million nerve cells connecting the two halves of the brain — have been linked with the following problems: trouble grasping non-literal language, difficulty understanding other people, clumsiness, seizures, and poor face recognition; all traits common in autism. These same brain differences have also been tied to such things as an enhanced knack for language and languages.
The senses of autistic people are unusual. They may be uncommonly attuned, or ‘hypersensitive’ to sounds, smells, tastes, touch, and visual stimuli.
Most people remember overall impressions, but autistics concentrate on detail, sometimes being unable to see the wood for the trees. They often spot details and connections that others miss, and they are quick to notice when something has changed. They tend to favour facts, patterns, and repetition, and will insist on doing things in their own way: they might always eat the same foods, wear the same clothes, or walk the same routes, and they can become highly distressed when expected, for example, to eat a different breakfast or sit in a different chair.
Autism is present from the early years and the signs c
an be seen in babies, who may not gurgle or smile, might not point or make eye contact, and who, when they cry, may not want to be comforted. Sometimes, however, the condition seems to emerge later, after more typical early development. The child might appear to be progressing as expected until all at once his or her behaviour mysteriously begins to regress.
The handicaps of more severely affected autistics are occasionally counterbalanced by extraordinary spikes of scientific, musical, or artistic talent and creative imagination. This marked difference is known as ‘uneven skill development’, or what Uta Frith has described as ‘islets of ability’ in a sea of disability.
The idea of the so-called ‘autistic savant’ struggling to communicate and take care of himself, yet able to play the piano and guitar at the same time, or draw from memory a detail-packed panorama of London, has been featured so often in films and on television that a notion has grown up that many autistics have gifts of this kind. But this is untrue. Autistic savants are exceedingly few and far between.
In 1944, a year after Leo Kanner’s influential paper, another Austrian paediatrician, Hans Asperger (1906–1980), independently used the word ‘autistic’ in a work of his own. It is debatable whether Kanner and Asperger happened upon the same coinage by mere serendipity. The word ‘autism’ was little more than thirty years old at the time, having been minted in 1910 by a Swiss psychiatrist called Eugene Bleuler, who derived it from the Greek autos, meaning ‘self’, and used it to describe the self-absorption of schizophrenics. Being already in clinical use it might well have seemed just the job for describing the inwardness of the children that Kanner and Asperger both wrote about.
Hans Asperger, who worked in Vienna, had studied hundreds of different children and singled out four boys between the ages of six and eleven. The behaviour of these children bore some similarities to that of Kanner’s eight boys and three girls.
