Chapter One
Does It Run in the Family?
I suppose every child regards its family life as normal. It's only in adulthood that we reassess the things we took for granted. Certainly, nothing in my stable, effortless childhood prefigured the position I would find myself in as an adult—a single mother of three sons, two of them autistic.
I live in the house where I grew up. It's an overgrown Sussex farmhouse with a large untidy garden. When my grandfather died, my parents moved in, on April 1, 1960—my first birthday. Thirty years later, I moved back there with my husband, Min, and George, then six months old.
The house hasn't changed much since the 1960s; the externals of George and Sam's childhood experiences are similar to mine. They sleep in the room I once shared with my brothers, and the dragons, sea lions, and goldfish painted on the walls by my aunts look down on them as they once looked down on us. The kitchen is still dominated by an inefficient Aga; the crumbling garden walls are still there for them to risk their necks, as my brothers and I used to. We walk through the same fields, splash in the same streams. As the boys lie in bed they hear the sounds I always heard, the creaks and rustlings of an old and drafty house, the train rumbling through the valley, the crooning of wood pigeons in the big yew tree outside.
Yet internally, their childhoods could hardly be more different from mine. George and Sam's experiences are disparate, unconnected, a series of sensory impressions that don't add up to make a pattern. When I lay in bed and listened to the train, I imagined dragons. I knew that dragons didn't exist, but I chose to tell myself stories about dragons; I involved the painted dragons on the wall in these stories. I knew that the noise was the London train, the one my father took to work each day. There was no confusion in my mind between the real and the pretend worlds, and to me, both made sense. I'll never know, because they can't tell me, but I believe that, for George and Sam, neither makes sense. When you're autistic, everything is experienced differently. The assumptions and explanations of the people around you are of very little help.
There were three of us children. Charles is two years older than me and Rowan two years younger. We were bookish and unsporty; Charles was quite tough and adventurous; Rowan and I were rather weedy. We went to the village primary school and brought friends home to play. We kept a great many animals. We made dens in the woods behind our house. We quarreled fiercely over Racing Demon, Pit, and Monopoly. When we weren't fighting, we played elaborate imaginative games based on invented worlds. Rowan and I ruled jointly over the whimsically named Land of Nursery. Rowan's responsibility was primarily for organizing building programs, controlling civil wars, and colonizing outlying regions with his Hornby train set, while I concerned myself with social and domestic dramas. Charles's country, the United Moore Republic, was more austere. It was a military dictatorship with no female inhabitants.
These invented worlds were not retreats for us. They were shared. They were not a substitute for real life but an extension of life, a rehearsal for what would concern us as adults. We moved freely in and out of one another's games, though we bickered as we did so. None of us, in other words, exhibited the autistic "triad of impairments"—of imagination, communication, and social interaction.
Play of this kind hardly exists for George and Sam. They have many toys, but few of them are put to their intended use. Their play is limited, end-stopped, and—above all—unshared. George, aged thirteen, went off to school this morning clutching three toy tank engines. He likes these engines, will move them about a bit and give them a few snatches of dialogue—lifted from his Thomas the Tank Engine videos—but he has no intention of inviting other children to join him in playing with them. If another child initiated a game, George wouldn't know how to reciprocate. If anyone suggested that he was too old to be playing with tank engines, he wouldn't know what that person meant. Sam's play, such as it is, is even more private, because it's largely nonverbal. It's hard to tell, even, whether he is actually playing in an imaginative sense at all, or whether he's just making movements and noises for their own sake.
For me, the life of the playground was by far the most important and interesting part of school; for George and Sam, outside "play" is just existing in fresh air. I was deeply involved in an ever-shifting network of friendships and alliances; my sons have no independent social life, nor do they appear to want one. Each day, they go to an autistic unit attached to a special-needs school in Hastings. George is interested in the other children, probably regards them as his friends, and has occasionally asked me to invite them home, but it would never occur to him to ring them up or invite them himself. Sam seems barely aware that the other children exist. As far as I can tell, neither of them imagines that they will not be at school forever. They have no ambition, no thoughts about their adult selves, no perspective on anything except the here and now. The contrast between my experience of being a child and theirs could hardly be greater.
When, after George and Sam had been diagnosed, Min and I needed to decide whether to risk having another baby, we went to the Maudsley Hospital for "genetic counseling." It's now generally accepted that autism has genetic causes, that it does "run in families." The picture is somewhat obscured by the fact that, due to the antisocial nature of the condition, full-blown autists are much less likely than almost any other group to become parents themselves. In preparation for the consultation we were asked to note down any family members who were eccentric, depressive, obsessive-compulsive, schizophrenic, even dyslexic—and of course, any who were actually autistic.
My family has lived in the same place for a long time. They have always been great letter-writers and recorders of information, they have been socially stable, their lives have not been hugely disrupted by war or disaster, and none of them ever throw anything away. All this means that I can tell you a very great deal about my family for several generations. Don't worry, I won't—not much. But my report for the Maudsley was pretty comprehensive. I came up with some cases of mild depression, one obsessive-compulsive, no dyslexia. Lots and lots of left-handers—I'm not sure if that's relevant. No schizophrenics, and no confirmed autists—and absolutely no one who wasn't able to lead a normal life, if by that one means marrying, holding down a job, maintaining friendships, bringing up children.
There are eccentricities, as there probably are in most families. In my case, they cluster most markedly around my paternal grandfather, the one who died when I was a baby. Grandfather had extreme food fads. He abhorred fat of any kind and couldn't bear people to eat butter or cheese anywhere near him. Although he was a kind man, he imposed his fussiness on his forbearing wife—family meals were utterly plain and monotonous. He made up his mind about something, and never changed it. "In 1898," he remarked, "I ate an apple that I almost liked."
Grandfather took comfort in familiar objects. When he went to boarding school, in 1894, he had a dressing gown—"the New Dressing Gown." In 1959, during his final illness, the hired nurse threw the New Dressing Gown away. My mother is convinced this hastened his end.
Grandfather kept a diary for every day of his adult life. It is a startlingly un-intimate record. If you want to know about Welsh miners' strikes in 1919, or the times of trains from London to Chatham, then Grandfather's your man. He recorded the weather every single day. This is not so odd, given that his great love was the sea and sailing ships, but less easy to explain is his habit of recording the life span of each of his razor blades. It is hard to come up with a better example of "autistic" information: "12 February 1932. This morning I discarded my razor blade, after 86 days of use." The fact is recorded purely for its own sake. It has no resonance, no wider context.
Grandfather was a literal-minded man. He argued against the existence of angels, because in order to support their wings they would have to have a breastbone twelve feet deep. Going to the cinema with him was agony, says my aunt, because inaccuracies enraged him. "That's not a man-of-war. Where are the puttock shrouds?" he would demand of the luckless usherette. "How can you show such nonsense in your cinema?" He talked to everyone in the same way, making no allowances for education, age, class, or show of interest. The local policeman once called in, to inquire about a shotgun license, and was found in the drawing room, imprisoned by politeness, while my grandfather read him extracts from Swift's Journal to Stella.
This last characteristic was admired. He was a polite man, except when exasperated by inaccuracies of rigging, and most people felt flattered by the way he discoursed with them. My grandfather's eccentricities were generally seen as harmless and endearing, though for his children irritation and embarrassment also played a part. His Pavlovian response to the sound of the hornpipe caused my poor aunt acute distress—when he heard it played by Battle Town Band, he danced the length of the High Street. At the theater, once, he was in a box, and wanted to make contact with his companions who were seated below, so he turned his program into a paper airplane and threw it down to them midperformance. He had no fear of heights (a common autistic trait) and loved walking round the tops of factory chimneys or the battlements of Bodiam Castle. He delighted in disregarding the sign at the railway station that said "Passengers must not cross the line." "I'm not a passenger," he would proclaim with autistic pedantry as he skipped across the tracks.
All this makes him sound like a classic case of undiagnosed Asperger's syndrome. And yet there is plenty of evidence in the opposite direction. His marriage was happy and stable, though perhaps this says more about my grandmother, who was by all accounts a particularly loving, humorous, and tolerant woman, than it says about him. He was an affectionate and interested father; he wrote "baby books" about each of his four children, recording funny remarks and charming habits as well as statistics about teeth and weight. He maintained several lifelong friendships, and seems to have enjoyed socializing. Following his father's wishes, he became a doctor. For himself, he would have preferred a maritime career. He became the medical officer of health to Battle Rural District Council and wrote detailed and sympathetic notes about the diseases—rickets, TB, scarlet fever, diphtheria—that he encountered in the cottages of the poor. But at times his sense of medical priorities was not all it might have been. During the Second World War, he was asked to give lectures on first aid to volunteer nurses. My aunt popped in on the fourth of eight lectures to see how things were progressing. The young trainees were earnestly taking notes on the causes and spread of the Black Death.
Though Grandfather seems to have been closer to autism than other members of my family, he was far from being a diagnosable case. What of my sons' father's family? Are there any genetic clues to be found?
The Smiths—Min's father's family—came from Birmingham, and hadn't moved about very much, so we know a fair amount about the last three generations. But Min's mother, Eva, didn't know her father. He was a Czech architect who died of cancer, and we don't know much more than that. Eva's mother, Elvira, came from a highly educated Hungarian family—Jewish, but they'd given up practicing. There were mental health problems—Elvira's older sister committed suicide—but, with most of the family in concentration camps, there were mitigating circumstances.
It's hard to disentangle Elvira's innate psychological makeup from the historical circumstances in which she found herself. She was a great survivor. She escaped to England before the beginning of the war, and because she was pregnant with Eva she was able to remain here. She had a second child, Marina, and she left the girls in a series of boarding schools and orphanages while she struggled to make a living. She was a single mother; she married three times, but the marriages were all short-lived. It would be interesting to know whether she felt guilt about leaving the children, because guilt is a very nonautistic emotion. I wonder, too, whether she experienced the less rational guilt at being one of the family members to avoid the camps.
By the time I knew Nana, as we always called Elvira, she was an active old woman, furiously resisting old age, and very, very preoccupied with herself. As with my grandfather, it would be stretching a point to place Nana on the autistic spectrum, but there were certain characteristics . . . like my grandfather, she talked in exactly the same way about exactly the same things to whoever she met. She had a fund of interesting stories—she had friends who were well-known artists and writers—but because she never paid attention to anyone else, she rarely added new ones, and she didn't attempt to remember whether she'd told them to you before. She was always pleased to see me, but I never got the impression that she knew me at all.
Nana was academically able. She had trained as a lawyer, spoke seven languages, and became the successful headmistress of an approved school. But when she read, or talked, she seemed interested only in finding evidence to confirm what she already thought about things. She never modified anything—her opinions, her manner, her appearance—to suit her circumstances. Her liveliness and force of character gave the impression that she was a sociable person, a "party animal," but the impression was a false one. She was, I think, very much alone.
George couldn't bear Nana. She died just a month or so before his autism was diagnosed, and I regret that I was never able to explain away his tearful, clinging behavior when she came to visit. Nana had a deep, resonant, heavily accented voice. She had been a very good-looking woman; in her seventies, she still wore plunging necklines, high heels, and masses of clanky jewelry. She would pick her way across our muddy garden in sling-back stilettos and mink coat, utterly failing, as an autist would, to adapt to circumstances. We told her, as politely as we could, that her dramatic gestures, overinsistent hugs, and elaborately presented gifts were all frightening for George, but she could not take this in.
Could Nana possibly have been autistic? She had many eccentricities. She would remove food from the table and take it home in her handbag, and she was incapable of buying anything new—for Christmas I once received a box of bath salts with a pre-decimal price tag. She rarely—as far as I could see—ate a proper meal, but created strange concoctions; I remember broken-up Ryvita mixed with quantities of neat tomato purée, and bags and bags of raw carrots. It would be feasible, however, to attribute this behavior to the trauma of her experiences as a refugee. Other peculiarities, like the fact that she was unsure which part of the ear to attach clip-on earrings to, are more obviously reminiscent of the syndrome. There was something false about Nana, but not false as in scheming. It was as if she had constructed a whole persona to carry her through life, because despite her apparent sophistication, she didn't really seem to understand the way the world worked.
I'm sure other members of the family, reading this, will protest vigorously. "Nana autistic? What nonsense!" And certainly I would never have come up with such a theory if George and Sam's condition hadn't encouraged me to subject their forbears to intense scrutiny. On the Smith side, their father's father's family, there seems at first sight to be nothing. The Smiths were a straightforward bunch who worked hard, moved up in the world, married and had children, enjoyed participating in sport, and were reasonably socially active. Several of them were successful salesmen, which suggests a nonautistic ability to observe and predict human behavior. But then there was Cousin Artie. Cousin Artie was a pretty remote connection—Grandfather Clive's second cousin. He died a long time ago. But it is significant that, despite his remoteness, stories are still remembered about him. Artie was very intelligent, with an amazing memory for facts, but he never made the success of himself that people expected. He never married; he lived alone, sweeping up dust and storing it in jars, doing without crockery—he used an old sardine can as a dish—and burying his money in the garden. Cousin Artie had an even less accessible brother, Cousin Victor, who committed suicide. Depression and suicide are common among high-functioning autists and people with Asperger's syndrome, particularly when their condition is undiagnosed.
Our trawl through family history threw up poor long-dead Artie as the closest thing to a full-blown autist. Arguably the examination of any family could reveal such a character. Why did Min and I produce George and Sam? Did the eccentricities in both our gene pools combine to produce exactly the right ingredients for autism? People have often asked me, why have you got two? And the only accurate reply is, I don't know. In a way, it doesn't really matter. I've never raged against fate, or cast about much for explanations. Nothing in my own childhood experience led me to expect that anything would be "wrong" with my children, but then there they were, and—well, you just get on with it.
The Maudsley estimated our chances of having a third autistic child as one in twenty. There was a much higher chance—one in six—of the child having a minor learning problem—being a slow reader was the kind of example they cited. If the child was male, the "danger" was much greater, so of course we hoped Jake would be a girl. I found out that he wasn't halfway through the pregnancy. There was a little scare—the midwife couldn't find the heartbeat—and I was rushed off to hospital for an extra scan. The heartbeat was swiftly located, and so were the genitals. "Do you want to know?" asked the nurse. I hadn't thought I did, but suddenly it made sense to get the disappointment of the new baby's gender out of the way before the birth itself. So the anxiously waiting extended family had several months to get used to the idea that I would have a third boy.
Five years later, the worry seems extraordinary. Jake is not only not autistic, he's the least disappointing child it's possible to imagine.
Copyright © 2006 by Charlotte Moore. All rights reserved.
