Inside Story: David Newnham
Some experts call it mind blindness. others suspect that it's caused by a paralysing terror of life. But they're all agreed on one thing - it is one of the most mysterious disabilities known to science. So when a young Berliner began to write messages from the closed world of autism, it felt like a miracle. And then the doubts began
News from Nowhere?
There is a particular kind of story which seems designed to tease newspaper readers. It is tiny - often just a single paragraph - and it frequently concerns cancer. You stumble upon it by chance, at the foot of a page deep inside the paper. Typically, it tells you that "scientists have discovered a chemical in the saliva of moths which inhibits the growth of tumours.." Against your better judgment, you offer up silent thanks. We have all crossed another bridge, you say. Humanity has jumped forward a square. But even before the page is turned, a wlse old volce whispers at the back of your mind. Sbould you live to be a thousand, it says, you will never hear another word about moth saliva. And so it is with Birger Sellin.
Birger's book has just arrived here, having sold 50,000 copies in Germany. It comprises a selection of short passages and poems by the young Berliner, who began writing at the age of 17. Birger's work would not be out of place in a modern day book of psalms, and the collection's title, translated as In Dark Hours I Find My Way, seems to reflect this. But the nature of Birger's writing (he puts a lump in your throat which is quite hard to swallow) is almost beside the point. Rather it is its very existence which invites rejoicing. For Birger is severely autistic.
The book's subtitle - Messages From An Autistic Mind - hints at the significance of this. For Birger's writings do indeed appear to be communiqués from a country whose borders have been sealed against all outsiders. As such, they offer an insight not merely into the mind of the author, but into the nature of a riddle which persists in evading solution. One sentence on the book's jacket goes even further. "Autism," it says, "is one of the most mysterious disabilities known to medical science."
Is there a case for elevating autism to such an awe-inspiring status? Leaving aside for a moment the significance or otherwise of Birger Sellin's contribution, scepticism would be understandable. After all, isn't. medical science adrift in a sea of mysteries? Smash your leg and a surgeon can fix it. But go down with a virus and you are on your own. From depression to PMT, and from asthma to backache, it's the same story. Medicine, it seems, is still a little short on answers. So what sets autism apart? Simply this. After half a century of seeking an answer, the world's experts have barely worked out the question.
The problem has been partly one of definition. Before anyone could hope to prevent or cure autism, they had to find out what causes it And this is considerably more difficult if no one can even agree which of their many and varied patients suffers from it and which does not. For autism covers a multitude of sins.
Its public image is a shambles. Star of the show is Dustin Hoffman, whose faultless portrayal of an autistic adult in the film Rain Man at least dispelled the rumour that this condition was for children only. And while the Hoffman character had little understanding of the world beyond his own obsessive routines, his disability did have its positive features. The man was what used to be called an "idiot savant", though the term has now been supplanted by the more sensitive "autistic savant". He could memorise whole telephone directories. He could perform impossible feats of mental arithmetic. And fortunately for the plot, he could calculate the odds at Vegas.
Closely behind the Rain Man comes Stephen Wiltshire. The south London boy who rattles off detailed sketches of complicated buildings having given them the briefest of sidelong glances, is a true ambassador for autism, and his books of drawings are bestsellers. As we turn the pages and follow his strange career (Stephen has now revealed musical abillties, and apparently plays the piano like a natural), we note with a shiver that, in his otherwise faithful rendering of the old Midland Grand Hotel facade at St Pancras Station, Stephen has drawn the clock face in mirror image.
But in the backs of our minds,there is another picture of autism - one which seems irreconcilable with those first two. It is the incontinent child who sits on the floor - who rocks to and fro - who bangs his head on the wall and bites his own arm till it bleeds. Unable to make sense of the outside world - confused, even, as to where he ends and that other world begins - he refuses to speak or make any human contact, either by eye or by touch. He is neither a genius draughtsman nor a human calculator. His condition has been compared to that of a concentration camp inmate whose terror and incomprehension have made him insane, and whose fear of the absolute unpredictability of life and of death has driven him deep into himself. This, too, is autism.
Until recently, the public's confusion has been shared by the medical profession Not surprisingly, few could agree which package of symptoms was likely to have a common root - let alone what that root might be. The problem is the length of the chain of cause and effect - from invisible brain malfunction to highly visible and variable behavioural disorder. But let's forget about brains for a moment - they are notoriously hard to fathom. Let's think about feet instead.
Imagine a world in which medical science had never come across broken bones. Now imagine that you, for your sins, are a general practitioner. Dozens of your patients have fractured a small bone in one of their feet (it sounds silly, but play the game for a minute). You, of course, have no idea what their problem is. How are you ever going to get to the root of it when all you see is a parade of people with a variety of mysterious symptoms?
Some merely suffer slight pain, while others walk with varying degrees of difficulty or not at all. Among these are peopie whose awkward gait has given rise to serious back and neck disorders. "My spine is in agony," they say. And in desperation you examine each vertebra for a clue. At the far end of the scale are patients who have never walked at all. Their leg muscles have completely wasted, and on the face of it, this is the cause of their immobility. And as if all this were not confusing enough, many of your patients damaged their feet in accidents which left them with other injuries too. Many of these injuries are crippling, so that neither you nor they even suspect that their feet are damaged.
The first breakthrough comes when you recognise that a number of your patients have something in common. And so it was with autism. Sure, there have always been autistic people, and they exist in all societies. Those familiar with the symptoms can spot the syndrome in Indian folk tales and the traditions of Old Russia. The story of a Maltese boy who arrived in church dragging a cottage door because his mother had said "pull the door behind you if you come to mass", probably refers to the literal-mindedness of autistic people. And yet it was not until the early Forties that two physicians, Leo Kanner and Hans Asperger, formally identified the condition.
Working quite independently, each came up with the same word to describe what they were seeing in many of the strange and self-absorbed children they examined. Kanner called it autism, from the Greek "autos" meaning self. And so, by coincidence, did Asperger. Autism - so good they named it twice.
And after the naming came the sorting and the counting. Flip back to your imaginary patients. Some limp because their knees hurt and others because their hips are damaged. Only a few limp because they have broken bones in their feet. Similarly with those who can't walk at all - sometimes it's the feet, but sometimes it isn't. And it's the same with the back sufferers, and the people with damaged necks. Sometimes the feet are to blame, but sometimes the cause is something entirely different. And if you, their doctor, are ever going to catch on to those little broken bones, you must first decide whose symptoms have the common cause.
Most researchers have finally agreed on how to tell the autistic people apart from the rest. Three areas of impairment have been identified, and for someone to be classified as autistic, they must display all three. First they must have difficulty relating to other people in a normal way. Next, they must have problems with communication. Finally, their powers of imagination must be impaired. Sure they can have additional traits - indeed they frequently do. Obsessive, stereotyped behaviour is one, and resistance to change is another. But the "triad" of core impairments must all be there. Two out of three won't do.
Once that was agreed, the counting could begin. One study, carried out in south London in 1979, suggested that 22 children in every 10,000 fitted into the broadest definition of autism.
And so it begins. It may be that a method has been discovered of ascertaining who the autistic people are. But the task now is to understand why they are. How do you set about narrowing down the evidence? One way has been to move progressively back from the obvious, up-front symptoms to find some common denominator. We're not talking about the cause here, but some basic impairment that might go a little way towards explaining the other more varied problems. In the case of our imaginary scenario, such a common denominator might be foot pain. The pain makes some people walk with a limp. It prevents others from walking at all. The pain is not the cause of the problem. That, of course, remains a mystery. But it is a vital link in the chain.
With autism, there is now widespread support for the notion of "mind blindness". Autistic people, according to this hypothesis, are unable to grasp that other people have minds which exist independently. Researchers have developed ingenious ways of testing the theory, and of screening young children for this extraordinary impairment. One of the most simple methods, the "Sally-Ann task", uses two dolls called Sally and Ann. Sally has a basket and Ann has a box. There is one other prop - a marble. This is how the test goes.
The child watches as Sally puts the marble into her basket. Sally then leaves, and while she is gone, Ann takes the marble out of Sally's basket and puts it into her own box. Sally then returns, and the child is asked: "Where will Sally look for her marble?" Typically, an autistic child will reply: "In the box." Most Down's Syndrome children get it right - as do children with no impairment. By using tests such as this, researchers are able to sharpen their understanding of autism, while at the same time gaining valuable insights into the development of the normal mind.
In the struggle to pin down the processes involved, the tests become relentlessly more sophisticated and the controls ever more rigorous. One problem is that as many as three-quarters of autistic people also suffer from learning difficulties. They may have hearing and visual impairments too, or they may have, say, Down's Syndrome. As with the imaginary patients who damaged their feet in serious accidents and therefore have other injuries too, autism is most often just one impairment among many.
And the root cause? Back in the early days, it seemed that the whole thing might be rather simple. So many of the children affected had middle class backgrounds and clever parents. Never mind the fact that these were the people most likely to have their children referred for specialist assessment - the cause of autism was obvious. It was the parents. More specifically, it was those cold, intellectual mothers - "refrigerator mothers" - who went around all day with their noses stuck in books and their heads full of nonsense. No wonder these children were strange and unresponsive, went the argument. They were suffering from emotional deprivation. And so a generation of parents, already grieving what effectively amounted to the loss of a child, were made to suffer the further agony of guilt.
Today, in Britain at any rate, the "refrigerator mother" explanation has been all but consigned to the pedal bin. Almost everyone working in the field now believes that physical problems affecting those parts of the brain that process language and information received from the senses are the root cause of autism. Such damage might occur before, during or after birth. Along with as yet unidentified genetic factors, causes might include lack of oxygen at birth, maternal rubella and complications arising from childhood illnesses. There might be an imbalance in certain brain chemicals. Then again, there might not. And to cap it all, it is possible - even likely - that a number of these different factors might be to blame. Not just broken bones but tight shoes and ingrowing nails too.
And then there's the maleness thing. Right back in the early days, it was noted that autism affected more boys than girls. Considerably more. The ratio seems to be in the region of 3:1, which is higher than can be explained by any mechanism involving genes. This in itself might suggest a line of investigation. But it is only half the story. So many of autism's manifestations - obsessiveness, a facility with rote learning, an inability to see the wood for the trees - echo types of behaviour with which we are all familiar in a certain type of "normal" male. Man the collector-gatherer, be he train-spotter, football know-all or classifier of Egyptian funerary-ware, has much in common with the autistic person, sometimes right down to the social impairment. Asperger himself surmised that autism might be an extreme or exaggerated form of maleness. It is an observation which may yet bear fruit.
The conclusion must be that, if autism is not "one of the most mysterious disabilities known to medical science", then it is hard to imagine what is. Now what of Birger Sellin Does his book help us solve the riddle?
Medical science has long had access to the minds of what are called "high-functioning" autistic people. While impaired in all the classic ways, these individuals are frequently able to perform well at school, receive a university education and take a job. Their particular grade of disability even has a name of its own (some indeed argue that it is a separate condition). It is called Asperger's Syndrome, because a high proportion of Hans Asperger's original patients were of this type. The Australian-born woman Donna Williams has Asperger's Syndrome, and she has written two books about her life. In the first, Nobody Nowhere, Donna describes her childhood and her early impressions of a terrifying, splintered world. It is a shocking account, full of noise and fraamented images, and of debilitating mental and emotional blocks. "I had trouble with words," she explains, "but this wasn't due to disordered thinking and I never jumbled them up like a tossed salad. I either spoke them as emotionlessly mimicked repetitions of what other people had said, spoke with a stragge accent, stuttered or found myself unable mentally to form the words to speak at all. All of these problems were due to a feeling of fear of the overwhelming intensity of my very untouched emotions." With professional help, Donna learned how non-autistic people respond to their environment. Her second book, Somebody Somewhere, charts the laborious process by which she forced herself to renounce the comfort of isolation and accept a new but frightening version of reality.
A comparable picture is painted by an American woman called Temple Grandin. In his book, An Anthropologist On Mars, the neurologist Oliver Sacks describes a meeting with her. The encounter leads Sacks to ponder at length on the nature of the autistic mind and the extent to which it differs from the norm. Temple is herself interested in psychology - and in particular the behaviour of animals. She has become a successful designer of equipment and systems for the humane and sympathetic management of livestock on farms, and has published a book called Beef Cattle Behaviours, Handling, And Facilities Design. She described to Sacks how she had learned to cope with aspects of human behaviour which she, as an autistic person, found baffling. She had observed people's reactions in different situations, and compiled a mental video library of these. Explaining how other people's emotional responses puzzled her, she handed Sacks the title for his book. "Much of the time," she told him, "I feel like an anthropologist on Mars."
Birger Sellin is different. He does not suffer from Asperger's Syndrome, but from a degree of autism which should rule out any ability to introspect or report. On the face of it, therefore, his "messages" are astounding, and of a different order of significance.
Birger was born in February 1973 to Annemarie Sellin, an RE teacher, and Dankward Sellin, a law student. He was a normal, happy baby. He was also an early talker. But at the end of 1974, his parents lost him. Not literally, of course, but to most intents and purposes. It began on Birger's first day at nursery school. He wouldn't stop screaming when his parents picked him up at midday, and it was same the next day too. Soon he developed a recurrent ear infection, and by the time it had cleared up three months later, Birger had ceased to be the same child.
He became terrified of other children. His language deteriorated, then dried up altogether; He began to avoid eye contact and stopped responding to his parents. Before long, he was spending most of his time under the dining room table. His favourite pastime was running glass marbles through his fingers. And his only utterances were screams.
In 1990, Birger's parents heard of something called "facilitated communication". Developed in the late Seventies by an Australian teacher called Rosemary Crossley, and much debated in the United States where it became popular for a time, it was a technique which, it was claimed, enabled and encouraged people with cerebral palsy and autism to "speak" to the outside world by way of a keyboard. A keyboard and a helping hand. Initially, the "facilitation" would involve a trusted person - in Birger's case, his mother - supporting the subject's forearm so that an index finger hovered over the keys. As self-confidence and strength grew, so the facilitator might gradually withdraw, until the support consisted only of a hand resting on the subject's shoulder.
In Birger's case, the results looked spectacular. "It was like tapping a sudden spring of water," says his mother. In Dark Hours I Find My Way presents a selection of his tappings, assembled in chronological order so that the reader can follow his development from strings of letters and single words to whole poems a couple of years later. Birger was not Stephen Wiltshire, and nor was he the Rain Man. By his late teens, he had been written off as incurably insane. He had been mute for 15 years. Yet after a couple of months at the keyboard, he "told" his mother on the computer screen one evening: "i dont i want to stop i love youyes".
Two months later, Birger, who uses no punctuation and likewise dispenses with capital letters, was apparently offering insights into his state of mind. "you mustn't scold but today you were very patient," his finger typed. "i dont fit into the widde world atall because im afraid im just afraid of ordinary things that it seem as halla harmless as buildings well they seem threatening to me im always scared but today it was specially bad becc be cause you shouted at me..."
He "revealed" that, from the age of five, he had actually been reading all the books that his parents thought he was repetitively toying with. As his ability to describe and comment on his own condition apparently grew, so Birger seemed to write on behalf of autistic people everywhere (he would pass the Sally-Ann task with flying colours). "how come everyone thinks i am impatient," he asked one day. "a person without speech has to be so patient there can hardly be any internal equilibrium". Later he explained: "the autistics view of life is like a ship sinking and making nonsense to keep from noticing i am captain of this ship..." He speaks of "our senseless underworld", refers to "the enlightened people of the world above", and tells his favourite therapist: "one of the main contradictions in us is our excessively sharp perception of internal structures and our hesitance in getting along with incalculable uncontrollable indirect reality."
Does this not have all the hallinarks of a tremendous breakthrough? If not the moth saliva that prevents cancer, is it not at least the equivalent of one of your own mysteriously crippled patients suddenly announcing that his problems began the day he missed his footing on the stairs - and that, what's more, he clearly remembers hearing something go "crack!" inside his shoe? Alas, no. There are two reasons why Birger's writing, extraordinary though it is, takes us no nearer to solving the riddle of autism.
First, and perhaps most obvious, is the question of the method used - facilitated communication. In a review of the English edition of Birger's book, the scientist Uta Frith, who translated the work of Hans Asperger and has herself made a major contribution to the study of both autism and dyslexia, speaks wearily of "this latest craze". Cases of facilitated communication, she says, "have been rigorously tested and proved illusory." She would find it easier to believe that Birger's writing is produced through a gifted psychic medium than the actual claim that is made. While she is convinced that there has been no intention to deceive, she firmly believes that Birger's psalms derive, however indirectly, from the light touch of his mother.
In America, where the technique was widely adopted for a time in the early Nineties, there has been a bitter debate among mental health workers, teachers and the parents of autistic children. One critic has called facilitated communication "the cold fusion of special education", and psychologist Eric Schopler, one of America's most respected experts on autism, has described it as "the most reckless, irresponsible use of a technique that I've seen in 30 years in this field". Chief among its proponents has been Syracuse University special education professor Douglas Biklen, who introduced the technique in the US. He argues that facilitated communication does work, but that its results simply cannot be measured using traditional techniques, which often frighten the subjects.
In 1992, staff at the OD Heck Developmental Center for the Profoundly autistic in Schenectady, NY, set out to prove that FC did work. They concocted an experiment which involved the use of pictures which were shown either to an autistic subject or their facilitator, and sometimes to both. The results of 180 trials were devastating. They showed that the facilitators were doing the communicating, albeit unconsciously. More studies the following year conflrmed that verdict.
Today, facilitated communication has lost much of its support in the US, and many schools have even banned the technique. Whatever the truth about Birger's writing, the fact is that his book is fatally flawed in the eyes of too many of the people investigating autism. But even if this were not so, how useful would it really be? Even such articulate insights as are given us by Donna Williams and Temple Grandin are treated with caution those digging for the roots of their condition. The reason for this is really self-evident. Given the very nature of autism, the perceptions of those who suffer from it are likely to be skewed - and skewed in ways which outsiders are not yet able to understand or predict. In short, messages from the autistic mind are transmitted on suspect equipment. And since the nature of the fault is unknown, the messages, while important and revealing in many ways, are unlikely to tell us what they appear to. Something like one in 10 autistic children are thought to have "savant" ablilties - outstanding skills in certain limited areas, such as Stephen Wiltshire's drawing, or the ability to commit huge quantities of information to memory. A familiar "party trick" (it is, of course, nothing of the kind) is to tell strangers which day of the week they were born on, simply on being told their date of birth. This feat might be performed by a l0 year-old, who is nevertheless incapable of adding up five and five. "Why," you might ask such a child, "are you able to perform a task which would be beyond most people when you are unable to do a simple sum?" The child may offer an answer. But how useful will his explanation be? The same argument applied to autobiography suggests that its value should not be overrated.
Michael Sell lives in Ealing, west London. Despite being five years old, he attends school for only two mornings a week. In 1992, a paediatrician at the local hospital said that Michael was probably autistic. Not severely autistic - but he most likely had learning difficulties too. Michael's parents think he should go to a local authority special school that takes many autistic children. But that school does not yet have enough staff to cope with the increasing number of children in Ealing who are being diagnosed as having autism.
For the time being, then, Michael attends an ordinary primary school, where he is taught in a single, open-plan classroom along with 120 other children. Outside the classroom, building work is in progress. An assistant sits with him while he is there. But because an assistant cannot be found to work with Michael for more than a few hours each week, he only goes in on Monday and Tuesday mornings. Michael's headmistress expressed her concerns to the council. She wrote: "That the borough is readily placing a child with such acute special needs in this environment leaves me quite frankly aghast and indeed ashamed." When the headteacher of the neighbouring special school paid a visit to Michael's classroom in January, she too was appalled. "It is impossible for Michael to access any learning within such a situation," she wrote to the council. "It is potentially a very frightening environment for him."
Michael's parents also find the situation frightening. His father, Patrick, describes it as "scandalous, insane and Kafkaesque". Ealing Council says it currently has a backlog of special needs cases to assess. But it does not comment on individual cases.
Just up the road, in Southall, Sarah Middleton manages a residential home for six autistic adults. The home is run by the National Autistic Society, a charity set up in 1962 by the parents of autistic children who felt more needed to be done for people with the disability than was being done by the state. The society now has a number of such homes, as well as schools and day centres. It encourages research, provides training for professionals and advice for parents, and it supports a diagnostic centre where parents from all over Britain can take their children.
Sarah and her staff see themselves as supporting rather than caring for their residents, providing them with routine and a structure that they can understand. She also knows that these are the lucky ones, and that for too many other autistic adults, schooldays will be followed by care in a community that has too much else on its mind. As she talks, Martin paces backwards and forwards, a worried look on his face. He seems like a man who knows he must do something urgently, but can't for the life of him remember what it is.
Ken comes into the room. Sarah persuades him to show us his weight-lifting equipment and his train-set, wbich he does in silence. Before we leave him to his weights, he gazes into the box of model carriages. "Network SouthEast," he says, but to nobody in particular. Sarah talks about the other residents - Bella, who has a fixation with Steffi Graf, blaming the tennis player for everything that goes wrong in her own life, and Eddie, who will not wear new clothes but goes upstairs five times in an afternoon and changes back into his old ones. And she talks about herself - eight years working with handicapped people and feeling increasingly frustrated and cynical about the enforced dependence on charity.
"As long as we shake tins," she says, "the Government can leave us to get on with it. And, meanwhile, people just shut off to disability." She talks of the need to maintain the respect and dignity of handicapped people. "Any one of us could be brain damaged tomorrow."
The uncertainty which engulfs Michael Sell and his family, the attitudes which Sarah Middleton sees all around her - these too may be read as communiqués, stark snapshots from the real world of autism where dignity is the rarest commodity. And there is a further danger, which is that the same uncertamty and the same attitudes speak with equal clarity in the reverse direction. In short, that they function as messages to the autistic mind - from Birger Sellin's "enlightened people of the world above".
In Dark Hours I Find My Way, by Birger Sellin, is published by Victor Gollancz at £7.99. Nobody Nowhere, by Donna Williams, is published by Doubleday at £14.99 (hardback) and the sequel Somebody Somewhere, is published by Corgi at £5.99 (paperback). An Anthropologist on Mars, by Oliver Sacks is published by Picador at £15.99. Autism: An Introduction To Psychological Theory by Francesca Happé is published by UCL Press at £12.95.
© Guardian Newspapers 1995. Used by permission.
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