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Michael Edge

November 14, 2011

A story worth reading from yesterday’s Observer:

In a sunlit garden in Dorset, a middle-aged man is looking at photographs of his life. He pauses on a family group beside a caravan, a faded black-and-white snap stained with streaks of tea, and gently touches his forefinger to the face of a woman, pretty but careworn. She is in her 30s, with her arms around two boys. He says, “Mummy.”

He moves his finger to the man in the group, a stiff-backed, hawk-nosed figure in a suit and Homburg hat: “Grandad!” He flips to the next photo and grins broadly: “Daddy Edge!” The man in the picture, seated on a sea wall, is grinning, too — their faces look almost identical.

The man turns to the next picture and taps it with his forefinger, twice, as though he has remembered someone who, long ago, had been very important to him. It is a school portrait of a boy in a blue pullover, his freckled face a mask of fright and bewilderment. The man says ruminatively, “Michael Edge.”

Michael is a remarkable man. Half a century ago, when he was four years old, he was one of the first British children to be recognised as autistic. In the US, the word autism had been coined two decades earlier, to describe a tiny group of adolescents – fewer than a dozen in the first study. The children exhibited bizarre and often deeply troubled behaviour, in a pattern so clear-cut it might have been designed from a template. But in Britain, until 1961, almost all doctors regarded these symptoms as part of some general “childhood psychosis” or junior version of schizophrenia.

“Child psychotics” were generally placed in institutions before their sixth birthdays. They were seen as unmanageable and untreatable. But Michael was different. His parents, an ordinary working-class couple from Essex, vowed that their son would stay with them and be brought up as one of the family. Fifty years on, he lives as independently as possible under the eye of carers he regards as close friends, in a secluded village cul-de-sac on the south coast. Michael cannot know it but his life, and his mother’s indefatigable love for him, have been a pioneering model for any family with an autistic child, including my own.

When other children were starting nursery school, Michael Edge, aged four, was taken by his parents to a psychiatrist. He had been an easy baby, a good sleeper who seemed to develop well, but from the age of about two and a half he began to regress. His vocabulary dwindled until soon he could not speak, only scream. “His grandfather kept insisting there was nothing wrong with him,” says his mother, Joan, “but Michael was fascinated by lightbulbs – if there was a light on he’d go round and round it, as if he was hypnotised.”

He ceased to respond to Joan’s voice, ignoring her even when she called his name, though he responded to stray noises – neighbours’ children, a dog’s bark – with paroxysms of terror. The family GP couldn’t explain it and sent them to University College Hospital (UCH), near Regent’s Park in London.

The hospital’s consultant child psychiatrist was Kenneth Soddy, an expert with 30 years’ experience. “He told us Michael was autistic,” Joan says. “And he advised us to send our child away and forget him, because he wouldn’t ever improve. ‘Do it for your own sakes,’ he said. We went into the park and I cried my eyes out.”

Joan is 81 now, and Michael is 53. She and her husband, Cliff, a railway worker, fought to find the best school and the best treatment for their son, not once but again and again. Their family suffered appalling stresses, and Joan’s health was almost destroyed. Even today, Joan faces daily worries about his future. “No one can tell me if he’ll have a normal life span,” she says. Not even Michael’s most experienced care workers can offer a clue.

The Edge family are well named: throughout Michael’s life, they have been pushing at boundaries.

In the Dorset garden Michael stands up from the photo album and covers his ears with his hands. There are too many people he doesn’t recognise here today, and they are talking too much. He calls out, “Dee-Dee”, and stamps along the patio, moving with exaggerated determination. “Dee-Dee!”

A woman appears and he studies her face intently for a moment. Then, with a relaxed swagger, he returns to his house, goes through the French windows into his sitting room and disappears. “He takes his cues from me,” says Deanna Zebedee, one of Michael’s favourite carers. “If he’s stressed, he looks at me and sees I’m calm and he’s fine again.”

Deanna started working for the Wessex Autistic Society last July and, although she had not cared for adults with learning disabilities before, she and Michael hit it off instantly. It’s a misconception that people with autism are indifferent to the personalities of others, and doubly wrong to assume that someone who can barely talk cannot have a sense of humour. Michael and Deanna laugh at the same things and share jokes. “The other day in a café,” Deanna says, “he sat me down at one table and then took his plate to the other end of the room, so that the only way I could see him was to lean round a corner. And the whole time I was peeping at him, he was looking back, laughing at me!”

A fish supper in a café is one of Michael’s pleasures. His order never changes: cod with a slice of lemon, chips and beans, two sachets of ketchup, an orange juice with two straws and sticky toffee pudding with ice cream to follow. Deanna knows better than to try to change that pattern: if he was ever served with pizza, for instance, or sausage and mash, Michael might become afraid that he couldn’t have fish again, and refuse to go back. Instead, she is encouraging him to eat outside during the summer, under a café umbrella, or in the park, or (her most recent success) on a picnic bench overlooking the sea. “We get on really well,” she says. “I give him time to think things over, time to process what’s happening.”

The National Autistic Society (NAS) believes that around one in 100 people have autism in Britain today, a total of more than half a million. In America, the prevalence is similar, reckoned at one in 110. But in the early 1960s it was almost nonexistent: by February 1964 the newly formed Society for Autistic Children, precursor to the NAS, reported in the Guardian that it knew of just 2,000 cases. This was partly because British psychiatrists had been reluctant to apply a diagnostic term that imputed blame to the parents: “autism” was a word coined by American medics who theorised that loveless families and “refrigerator mothers” could induce total withdrawal in children. Its most vocal advocate was Bruno Bettelheim, a survivor of Dachau, who claimed that rigid, emotionless parents were the equal of concentration-camp guards.

In Britain, paediatricians used blanket diagnoses that covered behavioural problems and learning difficulties. But, however it was described, cases on the “broad autistic spectrum” (as it is termed today) were becoming far more visible in Britain after the war. One leading psychiatrist, Gerald O’Gorman, told the Royal Society of Medicine in 1952: “The greatly increased attention which has been paid recently to the subject of childhood psychosis has prompted some pertinent questions: ‘What happened to all these children in the past?’ and ‘Why haven’t we seen them?'”

Autism in Britain was invisible 100 years ago. There are two well-known accounts of children in 19th century France who certainly appear autistic, and a superb description by Mark Twain of a blind youth on a US train who could not talk but who rocked wildly in his seat, imitating the noises of the express: “Clattering, hissing, whistling, blowing off gauge-cocks, ringing his bell, thundering over bridges with a row and a racket like everything going to pieces, whooping through tunnels, running over cows… for three dreadful hours he kept it up.” His report sounds very much like autism – but in the whole of British Victorian literature there is nothing to match it.

The full name of the first British child to be documented with autistic behaviour is not known; we have only his initials, from his case study. “JS” was born on 13 October 1933 and taken at nine years old to Great Ormond Street Hospital, where he was seen as an outpatient. He had been a normal baby, but after his third birthday began to lose interest in his parents, his toys and his surroundings, and became withdrawn. He stopped speaking. Fits of rage and terror became frequent. After he was woken by a firework he became afraid of going to sleep, and he could not go to school because he clung constantly to his mother. She was devoted to him, but the constant attention and probing from the specialists upset JS so badly that he became unmanageable. He was placed in a mental hospital, where he would leap across a room to avoid human contact, and where his only noises were echolalia – imitating the sounds he heard around him, like Mark Twain’s railway companion.

JS had one very ordinary trait – a sweet tooth. He could hear a mint wrapper rustling in the next room. He liked to suck his food and swallow it without chewing. One day, aged 28, he choked to death.

That case study was presented in the British Journal of Psychiatry in 1963 by Dr Mildred Creak, one of the pioneers of autism research in Britain. She began working at Great Ormond Street in 1942, the year JS was first seen there. But her fascination with psychiatry went back 20 years, to a Quaker hospital in York called the Retreat. A Rockefeller Scholarship in the early 30s took her to America, where she worked with the first doctors to specialise in childhood mental disorders. Foremost among them was Leo Kanner, who published the first formal description of autism in 1943 after studying 11 American children, all born around the same time as Britain’s JS.

Creak, who was both a Quaker and a former wartime major in the Royal Army Medical Corps in India, knew of Kanner’s work and didn’t like it. She admired his “excellent clinical description” but she felt it focused on a narrow range of disorders without defining them, and at the expense of more nebulous mental problems. By 1956, though, she was prepared to identify autism where she saw undeniable instances of “Kanner’s Syndrome”. She began working with Gerald O’Gorman to pin down what was, and was not, autism. They compiled a nine-point checklist including: “sustained impairment of interpersonal relationships”; “unawareness of personal identity”; “preoccupation with particular objects” and “striving to maintain sameness”. Abnormal sensitivity to sound and “islets of skills or knowledge” were other factors. The list was published in 1961 and without it Michael Edge would probably not have had his diagnosis.

“I was determined not to give in,” Joan says. “I don’t know how our marriage survived, but it did. My husband wasn’t a particularly tolerant man, but he was wonderful with Michael. And my dad, he was marvellous – he used to spoil him and bring sweets every Sunday and play Michael’s LPs for him. Michael used to love the groups. He couldn’t speak, not to answer a question or tell you something, but he could read all the names of the bands on the album covers… the Beatles, the Stones. He absolutely loved music and so did I, so we were always singing and dancing in our house.”

A family friend ran a nursery school near their home in Essex but, though he attended only in the mornings, the staff could not cope with Michael. Intelligent and alert, he was desperately frustrated that he could not express his emotions or communicate even his most basic needs. Many people made the assumption that, because he could not talk or use sign language, he was scarcely sentient. But if a complex jigsaw was put in front of him he could do it without looking at the picture on the box-top; he could even do it with the pieces face down. “He made it look easy,” Joan said. “But woe betide us if there was a piece missing. We’d all be on our hands and knees, frantically looking for it, and he’d be very distressed if we couldn’t find it.”

At the urging of a social worker from UCH, Cliff and Joan sent their son to a school for the deaf at Belmont Hospital in Surrey, hoping he would benefit from speech therapy. He boarded there and the couple visited at weekends: “It was very hard: he was only six, and it was so difficult to leave him.” Michael learned to speak a few words, but his teacher saw how bitterly he missed his home and petitioned Essex’s local authorities to set up a school for autistic children. They did: a unit for four pupils opened in Romford in 1964. But if it was difficult to find psychiatrists who understood autism, it was almost impossible to find teaching staff. “One woman there bullied Michael dreadfully,” says Joan. “She was pulling his hair whenever he screamed. He was so unhappy and when he was nine I practically had a breakdown, just from the way he used to yell when he came home.”

This was the pattern that JS and his family had followed: a mother at her wits’ end asks for professional help and the intervention makes the child worse – so distraught that he has to be placed in an institution. But Joan was desperate not to give in: “I’d never forgive myself if Michael had gone into a hospital then. I know what would have happened – he’d have been drugged up to the eyeballs.”

Her older son, Terry, who was 14, gave quiet support and refused to complain. “It was difficult for Terry because we could never go out like a normal family,” Joan says. Her father, Ernie, came over to look after his grandson for a couple of hours every week, so Cliff and Joan could go for a walk and a drink together. And Cliff himself was often at home during the day because he worked shifts with a railway maintenance team that repaired tracks by night.

“His employers never helped – they didn’t do that in the 60s,” Joan says. “It was an utter nightmare. The people next door had a dog that barked all the time and it used to set Michael screaming and screaming. These neighbours were church-going people, but they were horrible about it. They just said Michael ought to get used to the noise.”

At her lowest point, Joan blamed herself. Though there was no evidence that autism was hereditary and no other sign of it in her family, she felt certain she was somehow responsible for her son’s condition. “The doctor told me not to be silly, it could have happened to anyone. But I thought it was my fault.” A local authority psychiatrist, Dr Vincenzi, who argued passionately that children who were parted from their parents would never overcome behavioural problems, managed to place Michael at an ESN (educationally sub-normal) day school. Even this was only half a solution; the school had no provision for autism.

Joan’s lifeline came, not from the authorities, but from a friend, Hilda – “a placid sort of person, very patient”. Michael responded to her calm, quiet voice and Hilda offered to sit with him for a day each week, so that Joan could find work as an agency temp. “I used to operate a calculating machine and I got odd days’ work. I might feel like death warmed up going in there, but by the time I came home I felt wonderful, because I’d got away from the house. And I gradually got better.”

In 1968 a school opened in Gravesend, Kent, specifically for autistic children. Michael became a weekly boarder, coming home for weekends and holidays, and stayed until he was 20. The family started to take breaks together, staying in a chalet in Norfolk. “Cliff was so good with him, taking him to the pub for an orange juice and some crisps – the pub had a jukebox and Michael loved that. But wherever we went, we were ruled by his routines. He had to do the same thing every time. If he wanted to turn left, we could never turn right.”

With Michael at school during the week, Joan and Cliff began raising funds for autism charities. Their first venture was a beetle drive – the 70s version of a Trivial Pursuit party. After that came the dances, with the amateur band from the Ford plant at Dagenham, and then the quizzes. They could raise several hundred pounds in an evening, and over the years Cliff and Joan collected more than £10,000 for charity.

A home for adults with learning difficulties in Colchester looked a hopeful placement for Michael when he left school. But he was miserable there and he settled only when an NAS centre in Wessex offered him a home. At first he was unwilling to leave his room; gradually, his carers encouraged him to eat with others, then to leave the house, on expeditions to the park or the shops. “When he first came here, he found it very difficult to understand where he was, what he could expect of us,” says Mandy Gibson, who has worked with Michael for more than 20 years. “So he wouldn’t interact with anybody. And it was our aim to help him get out into the community, to go shopping, to go swimming, to take part in different activities. It’s been a long, slow process, but he’s got there. He’s changed so much – if he’s got a problem, he can find the words to tell us. He copes with so much that, years ago, he couldn’t have managed at all: going to Tesco, visiting local attractions, taking a drive round the countryside with staff. He’s doing exceptionally well.”

Michael also returns to Essex for regular visits: “We kept all his old LPs and his gramophone, though it’s broken now,” Joan says. “He used to play them when he came home, but only two records each day. That was his self-imposed routine… except at Christmas. On Christmas Day he could play them as many times as he liked!”

Michael Edge’s life is like the prototype for my son’s. Like Joan and Cliff, my wife and I have two sons. Our younger boy, David, is 15, and profoundly autistic. He likes videos instead of vinyl, but the attraction is the same: records and movies never change, by a single note or a frame. They are dependable, unlike the real world. Certain noises are unbearable: not dogs, but ambulance sirens. Like Michael, my son can be calmed by a drive in the car, or driven to head-banging frustration if he is misunderstood.

When David was being assessed, aged two-and-a-half, a consultant in his 60s came and stood next to me as I watched my son through a two-way mirror. I asked him if he’d always specialised in autism. “Not really,” he said. “You hardly used to see it, years ago. If you did, the child would go into an institution by the age of five, and nature would take its course. I sometimes think that’s still the kindest option, for the family as well as the child.”

“When you say nature would take its course…”

“Well, there was a lot more TB around in those days,” he said.

When David is Michael’s age, I shall be 86. The fear of what will happen to him, and who will care for him, is constant. To watch Michael with his mother in his village garden brought a rush of reassurance, a sense that someone has already made a path for us to follow.

“I think he’s happy these days,” says Joan. “He’s much more relaxed, because he can do everything in a set order. When he visits me at home, he has to go round each room, touching the doors so many times, and then he feels safe. And every Thursday evening we talk on the phone – not a proper conversation, but he can say lots of words now. The staff at Wessex Autistic Society have helped him along more than I could have believed possible. And at the end of every call, he’s got this routine we have to follow before he can put the phone down: he says, ‘See you,’ and I have to say, ‘See you,’ and we repeat it eight times.

“He lives in the past, always talking and thinking about things long ago. Those things can’t change, you see. When my husband died, Michael couldn’t understand at first, but he does talk about Daddy Edge now. Autistic children are quite childlike, but they’re lovely. Michael could be a lot worse. A lot of good things have happened, too. I wouldn’t have missed it for anything, really.”

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