Let IT Go_The Memoirs of Dame Stephanie Shirley

by Dame Stephanie Shirley

  This deeper worry remained unarticulated for a month or two longer. The fluctuating fortunes of Freelance Programmers gave us plenty of other things to fill our minds, and for as long as we could we tried to persuade ourselves that everything would be all right. By the end of that year, however, there was no avoiding the observation that Giles was losing skills that he had already learnt. He had talked for a while, for example. I remember that his first word was not “Mummy” or “Daddy” but “car” (which may, in retrospect, have told us something). But he had never become chatty. And now he fell silent.

  Months of desperate anxiety followed, in which there seemed to be little that we could do except fret. Visits to our local GP alternated with consultations with a succession of experts and specialists. We became regular visitors to The Park, the children’s diagnostic psychiatric hospital in Oxford; and, later, to Great Ormond Street Children’s Hospital in London. Meanwhile, inexorably, Giles’s apparent disabilities became more pronounced.

  My lovely placid baby became a wild and unmanageable toddler who screamed all the time and appeared not to understand (or even to wish to understand) anything that was said to him. He no longer showed any interest in either me or Derek, and never once raised his arms to be picked up by either of us. His only interests seemed to be bouncing up and down - he destroyed two cots in quick succession - and tearing paper (books, newspapers, money, vital correspondence) into tiny strips.

  By mid-1965 Giles had taken up weekly residence at The Park, while the doctors there tried to work out what was wrong. Nothing I can write can capture the enormity of the sorrow that that short sentence now brings flooding back to me. This was my son, my adored boy, my beautiful Gilesy - and he had been taken from me by some sinister, invisible force that I could not understand. Every day for months - even as my dreams for Freelance Programmers appeared to be coming true - I would feel as though I had been wrung out by some emotional mangle; and it was no better for Derek. Our domestic idyll was in ruins. In fact, for the first month or so that Giles spent in The Park, I spent my nights in the hospital’s mothers’ unit and, by day, ran my company from there - a striking if unhappy example of the flexibility that our new kind of working conferred. Eventually, the staff persuaded me to go home, saying that I should be looking after “all the family”, not just Giles. But wherever we were in physical terms, the pain, for me and Derek, felt much the same. Irrespective of any successes at work, our days were just a question of hanging on until nightfall; of feeling the waves of pain and anxiety breaking over us, but grimly refusing to be broken by them.

  And there was worse to come.

  After Giles had been in hospital for about eight months, the consultant at The Park, Professor Ounsted, pronounced that in his opinion Giles was suffering from a degenerative brain disorder and would eventually lose not just his speech but his sight, hearing and balance. This seemed such a horrifying prognosis that we insisted on a second opinion. So Giles found himself spending two weeks at Great Ormond Street Hospital for Children: a wonderful institution that in those days was clearly more geared to the treatment of the ill in body than the ill in mind. I stayed at a very cheap hotel nearby and spent a lot of time physically restraining Giles from tearing down the hospital’s extruding electrical cables or throwing himself from its unenclosed staircases.

  Finally, in mid-1966, the excellent specialists overseeing Giles’s case - Professor Wolff and Dr Bentovim - delivered the devastating but unarguable verdict: our son was profoundly autistic, and would never be able to lead a normal life.

  In the 45 years since then, I have learnt more than I would ever have believed possible about this perplexing disorder. I have read hundreds of books and thousands of articles about autism, and have consulted experts in the subject from all over the world. It has become, in a sense, the dominant theme of my life. (I have even funded research into autism spectrum disorders at The Park.) Back then, however, “autism” was just a word, conveying little meaning to us, apart from some vague, horrible idea of “mental handicap”.

  We soon learnt more, and everything we learnt was like a skewer in our hearts. People with autism have an impaired capacity for social interaction and communication. They are prone to restrictive, repetitive and destructive behaviour. Unable to make real sense of the world, they cannot form viable human relationships. They are at increased risk of other brain disorders, such as epilepsy. Many have lost the power (or habit) of speech. Scarcely four per cent go on to achieve a degree of independence in adult life.

  It was as if all our hopes and dreams for Giles’s happiness had been snatched from us and trampled on.

  Shock was compounded by guilt. Every parent of a sick or disabled child is tortured by the thought that the problem might somehow be their fault. With autism, the medical orthodoxy of the day stated clearly that it was the parents’ fault. Leo Kanner, director of child psychiatry at Johns Hopkins Hospital from 1930 to 1959, had famously proclaimed that the condition was caused by cold, unloving “refrigerator mothers”; a theory subsequently popularised by his disciple Bruno Bettelheim, professor of psychology at the University of Chicago, whose 1967 bestseller, The Empty Fortress, would suggest that such mothers had traumatised their children by behaving like “concentration camp guards” towards them.

  That theory of autism’s causes has since been discredited, while Bettelheim was later exposed as a plagiarist and fraud. But we had no way of knowing that - beyond a gut feeling that the theory must be false. We had loved Giles with all our hearts - and, indeed, still did. To say that we had crippled him with our coldness simply didn’t make sense. Not that that prevented us from torturing ourselves with self-reproach.

  None the less, we had to come to terms with the situation. We had, somehow, to move on from agonising questions about the past to no less agonising questions about the present and the future. We had to mourn the child that we had hoped for; to learn to love, in a different way, the child that we had; and to work out how best to look after him; and, somehow, to carry on living.

  There were few helpful pointers in those days for parents in our position. One medical professional advised us bluntly that we should put Giles in an institution, forget about him and start again. The advice horrified us. Neither of us was in any doubt that we wanted to do anything that was in our power to give Giles as fulfilling a life as possible, and to communicate to him - in so far as he was able to understand - how deeply we loved him.

  So back he came to Ley Hill - now aged three and a bit - to be welcomed into the chaotic, overcrowded, cheerful, low-ceilinged cottage that served as both our home and my workplace. Derek continued to work at Dollis Hill, although how he managed to do any creative scientific work there, with all this on his mind, is beyond me. I divided my time between our home, our Chesham office and the various locations to which I was taken by my role as Freelance Programmers’ chief ambassador. I had back-up from a baby-sitter (one afternoon a week) and, increasingly, from Derek, outside his regular working hours. But it still felt like an enormous burden to be shouldering more-or-less alone.

  Renate was sympathetic, but was increasingly preoccupied at the time with her own affairs - specifically, a lengthy on-off romance that she finally brought to an end by leaving for Australia, where, on the rebound, she married a man called Peter Tankard and (as previously mentioned) settled permanently. My mother, on the other hand, was surprisingly supportive. She was living quite near us by then, in a quiet Amersham cul-de-sac, having retired from teaching. She had quickly become besotted with Giles and remained so even when his problems became apparent. Drawing on her classroom experience, she would take him for a couple of hours a week, supervising him in pre-prepared activities such as biscuit-making that he seemed to enjoy. Her confident manner, developed through two decades of exerting authority over unruly pupils, seemed to calm him, and his wildness never exasperated her. I was grateful for this, but also, sometimes, felt sl
ightly undermined by it: Giles, in her eyes, could do no wrong, whereas she still couldn’t bring herself to give me the approval or reassurance that I yearned for.

  But it was my mother-in-law’s reaction that upset me most. She and Derek’s father lived in Queensbury, in what had until recently been Middlesex (now the London Borough of Brent), and we used to make regular visits. Once Giles’s problems became evident, she let it be known that she would prefer it if they could come to us instead, so that their neighbours would not see Giles visiting them. Needless to say, we found this deeply hurtful and insulting. She remained far from supportive for a long time, constantly suggesting that I was bringing Giles up badly. Her husband, a relatively conventional military man, was, in his straitlaced way, more empathetic, and at some point I told him how upset we felt at my mother-in-law’s attitude. He must have had a word with her, because soon afterwards she became much more understanding, and remained so from that point onwards.

  My own father played no more role in this stage of my life than he had in most of the previous ones. Early in 1966 I had learnt, by chance, that he was dead: he had died some months earlier, in 1965. Maria, his second wife, had not thought to inform his first family, and it was only a passing reference in a letter from his sister Alice that alerted Renate to his passing. The news must have given me pause for reflection, but I can’t honestly claim that it bothered me greatly. Our relationship had rarely been anything but distant, and I still find it hard to think of him with love. Yet I do remember him, increasingly, with admiration, and the older I get the more I feel that I have much in common with him. He cared too deeply about his work, as I do; he too was an idealist. The defining tragedy of his life - as of so many millions of other lives - was Nazism. In a happier age, he might have done great things, as a judge and perhaps as a father too. As it was, he went to his grave frustrated - even though he eventually rose to be head of both the judiciary and the police in the state of Hesse. Some time after his death, I was moved to discover that, all through his war-time exile and beyond, he had kept with him the brusque letter of dismissal that he had received from the Reich justice ministry in July 1933.

  But any warmth I feel towards his memory is abstract rather than personal. The love that fuels family life is ultimately dependant on people being there for one another, and as a father he had emphatically not been there for me. I resolved that, whatever else happened, I would be there for Giles. I had no idea then how much easier it is to make such resolutions than to keep them.

  In a sense, compared with what was to come, Giles’s autism was relatively manageable in those early days, when he was three or four. He was wild, and often unresponsive in what could be a desperately upsetting way. He had already taken to headbanging: bashing his head repeatedly against walls, furniture or people, which was both dangerous and agonising to watch. But he was at least small enough to be kept or snatched away from the worst troubles, and quiet enough to be able to pursue some of his less harmful interests, such as paper-tearing, without causing intolerable disruption to others. What broke our hearts was the thought of what the condition meant for his future, rather than what it meant for his present.

  In due course we learnt to stop comparing what was with what might have been (including the other children we might have had), and to think instead about the difference between what was good for Giles now and what was bad for him now.

  Derek was convinced that the key was getting him to speak again, but we were unable to find a speech therapist who was prepared to take him on. Eventually we settled for learning by experience how to interpret some of the noises Giles made, from the quiet hum that meant that he was happily engrossed in what he was doing to the frightening roars that indicated distress or frustration.

  Meanwhile, we attempted various forms of education, with limited success. I began by taking Giles to a local nursery, St George’s Hall, for two mornings a week. It soon became clear that they were not equipped to deal with such a challenging pupil. (One member of staff was sacked for losing her temper with him.) Then we took him for a term or so to a training centre in Chesham. Training centres were places where children and adults with various kinds of learning disability went for a primitive form of occupational therapy. The adults would perform simple and repetitive tasks such as envelope-stuffing in the hope that this might ultimately equip them to do some kind of productive work, while the children would be given the same kind of play-based teaching that they might have received in a nursery.

  This was a heart-breaking time. The staff at the training centre appeared competent, but there was something unbearably bleak about the whole business, and I never felt that Giles was contented there. One of my most vivid memories of this period is of going to watch the little nativity play that they put on at Christmas, after Giles had been there for about four months. I went with a friend, Jane, the wife of a former colleague, whose daughter, Suzannah, was at the same centre. We smiled politely at the clumsy efforts of the older children. Then, near the end, half-a-dozen smaller children, including Giles and Suzannah, were brought on stage on a trolley. They were all non-speakers, and none of them seemed to understand what was going on. None the less, they were dressed as angels. I wept as I had never wept before. The contrast between the sentimental “English dream” of Christmas and this cruel, botched reality was too painful to bear. Jane wept too; and, since we had both dressed up as smartly as possible for the occasion, we soon made a grotesque spectacle, with floods of mascara streaming down on to our previously immaculate blouses.

  But that, I reminded myself, was my disappointment, not Giles’s. All that really mattered, ultimately, was that he should be happy - or, at least, have some kind of quality of life. The difficulty was working out whether he had this or not. One of the cruel things about autism is that it is so hard to tell what the autistic child is feeling. You have to work at it, and learn to interpret often subtle signs.

  One less-than-subtle sign gave me a horrible shock a month or two later. I waved goodbye to him as he was being collected to go to the training centre, and, as I raised my hand, he flinched. I realised with chilling certainty what this meant: somebody had been hitting him. He never went to that training centre again.

  But the heart of the problem was not so easily solved. Giles’s condition remained intractable, and, the bigger he grew, the harder he became to deal with. I didn’t sympathise with our babysitter when she called him a “stupid boy”. On the contrary, I resented it bitterly. But I also understood that, for any adult charged with looking after him, Giles was almost impossibly difficult. He was disruptive, destructive, unresponsive - it was hard not to become exasperated from time to time. Even I, once, in the heat of the moment, slapped him on the leg. It was meant as a warning rather than in anger: a fierce “Don’t do that!” None the less, I was horrified at myself. I had never have imagined that I could ever strike a child: only a monster would do that. And now, suddenly, that was exactly what I had become.

  This incident seemed to sum up the grotesque things that were happening to me and my emotions. I loved my son, and yet was tormented by the occasional thought that I would better off without him. I longed for him to be protected from pain, and yet could not help feeling resentful, sometimes, at the utter absence of any sign that he appreciated anything that I or Derek did for him. Sometimes I wasn’t even sure that he knew who I was. I hated to be parted from him, and worried desperately when he was not there; yet I could not stop myself from wondering what life would be like without this all-consuming responsibility for this inscrutable tyrant.

  We had long since given up any pretence of a normal, happy family life. We snatched food when we could rather than sitting down together for meals. Derek and I resorted to sleeping in shifts. (You can imagine what this did for our relationship.) But what really frightened me was how the strain was changing me as a person. Emotions and ideas that I neither recognised nor approved of seemed to pop up in
my head without prompting. I even wondered, in my wilder moments, if Giles was possessed, and if I ought to get some cleric in to come and exorcise him. Another time, I wondered if I should get a sheepdog to help me manage him - at which point both Derek and I agreed that I was totally losing the plot. (Interestingly, though, specially trained “assistance dogs” are now sometimes used for precisely this purpose.)

  It is painful to recall this period of my life, even half a century later. But perhaps the saddest thought of all is that there are probably tens of thousands of parents of autistic children who will recognise immediately the kind of emotional agonies I am talking about. The harsh fact is that it is almost impossible to provide a satisfactory life for a child with severe autism without expert help - and that parents who try to do so risk destroying themselves in the attempt.

  Eventually, shortly before Giles’s sixth birthday, we were lucky enough to find a wonderful little weekly boarding school which specialised in non-communicating children, including many with autism spectrum disorders. Called The Walnuts, it was (and is) in the north Buckinghamshire village of Simpson, near Milton Keynes. It hurt terribly to leave him there: he was so young. But the head, Janet Pratt, was an inspirational figure, and it was clear that the children there were (relatively speaking) thriving. After much agonising, we decided that it would be unfair to Giles not to enrol him there. An ambulance used to collect him on Monday mornings and bring him home on Friday afternoons, leaving us the whole of each weekend to spend together as a family. Within a term or so he had become visibly calmer and happier.

  Weekends, and school holidays, were exhausting but manageable. Sometimes it felt as though our parenting was largely a matter of containment and damage limitation; but there were also periods of relative calm, when we felt love and togetherness and even a degree of optimism. There was, for all his problems, something very lovable about Giles. He was extraordinarily handsome, with an ethereal quality that made me sometimes wonder if he was a creature from another world. At other times, I thought of him as an “innocent” - as people with disabilities like his were once called.