We relaxed. It was possible to act naturally with this kind, bright man who seemed to trust us. I began one of our games with Elly. I had brought a bag of candy to occupy her when she got restless. I took a piece out and popped it into her mouth. She did not ignore me. She did not take another for herself. Instead, she reached her own hand into the bag and fed one to me. Not a high degree of interpersonal activity for an hour-long session between three adults and a three-year-old child, but we were satisfied. Dr Blank had seen Elly at her best, such as it was. What he told us we would trust.
We had asked him at the outset: ‘What is the very worst possibility we might have to face?’ We are ready, expecting it: to be told that, like so many parents of retarded children, we have been kidding ourselves, that there is no mystery about our Elly, that her strange abilities are no more than the creations of our desperate imaginations, that she is simply a retarded child, so severely retarded that, almost three years old, she still has no comprehension of human speech.
I had no doubt of what the worst possibility would be. Off and on, over the years, I had come across a few retarded children and heard stories of others. No family is exempt — my own uncle, injured before birth when my grandmother’s carriage- horses went out of control, had never learned to walk or talk. Uncle Will had died at twenty-one, still an incontinent baby, a generation before I was born. My grandmother, a strong- minded woman, had done what was very unusual at the time — after keeping him at home for years, she had put him into an institution. To spare the family, I suppose, but I think also to spare herself. She couldn’t bear it. I had a horror of retardation.
I assumed I could rise to most challenges if my children presented them, but I had wondered about that one. Myself proud of intellect, in my husband, in my children, in myself, I had thought that retardation was the worst thing that could happen to a baby, to a family, and to me.
But apparently this was not the worst possibility. There was another. The worst diagnosis he could give us would be a different word altogether — autism. Dr Blank had seen other children like Elly. At Johns Hopkins, in Baltimore, the psychiatrist Leo Kanner had for twenty years been studying a strange category of children, children who were like and yet not like the psychotic, neurotic, brain-damaged, and retarded children with whom he was familiar. It was hard to say what they were. They had Elly’s blank remoteness, her inability to relate to others. They had her imperviousness to speech; several of them had previously been diagnosed as deaf. They, like her, did not talk or, if they did, reeled off long formulas without communicative significance — television commercials, nursery rhymes, even lists of presidents. They had the same dexterity, the same interest in exact and delicate arrangement. They had the same unusual physical health, the same alert, attractive good looks. They even had the same intellectual parents: my husband and I, while scarcely typical of the population as a whole, were typical of the parents of autistic children.
Many psychiatrists called this condition childhood schizophrenia. But Kanner, who had many schizophrenics among his small patients, felt that this condition presented a rare but distinct syndrome. He named it Early Infantile Autism. And it was autism which Dr Blank considered the worst possibility we had to face. The retarded child’s abilities are limited, but he can progress. The autistic child’s intelligence, on the contrary, may be normal or superior. There is no way of finding out. Locked in himself, secure and satisfied in his repetitive activities, he will not use it, or even display it for testing. His condition, which so mimics retardation, for practical purposes may be indistinguishable from it.
The defect seemed psychological, not physical. Yet Kanner, himself a psychiatrist, had tried the techniques of psychotherapy. He had concluded they were useless. Dr Blank wanted to hospitalize Elly for further tests; two autistic children had recently been found suffering from an obscure metabolic defect. Such a defect, if he could find it, would be something tangible, perhaps treatable — with the techniques of the future if not of today. But if the trouble were all in Elly’s small psyche then the outlook was dark indeed. There was little — Dr Blank felt there was nothing — that professional knowledge could contribute to help her.
We took Elly home. In a month we brought her back again to Boston, for another three days in a hospital. If the trouble were psychological — I tried not to think what those hospital visits could do to Elly. So quiet, so remote — it was best to think that she, who had almost never been away from me, who had only once been away from home without me, would retreat into her self-sufficient contentment and make use of it to protect herself from this upheaval of her settled world. It was even plausible: Elly did not notice people, ergo, she would not mind the hospital. Yet I knew it was not so. During those three days a year ago she had cried, she had refused to feed herself or let the nurses feed her. She was in better contact with us now than she had been then. To abandon her again, with no explanation even possible? It broke my heart to do it. Yet it had to be done, and I was already becoming adept at putting out of my mind things that were likely to break my heart. Since Elly would never tell me how she had suffered it would be almost as if it hadn’t happened. It was in any case outside the area of my control. There was no better care in the world than was to be found in the Children’s Hospital. The doctors would be humane, the nurses experienced. Experienced enough to understand the needs of my wordless baby, to meet them in a way she could accept? Best not to form the question.
David and I went together to take Elly to the hospital. It is a very large building, with many wings and many floors on those wings. Or perhaps it hasn’t got many wings at all, perhaps it merely seems enormous, easy to get lost in, and threatening to someone who has not the expertise of illness. I had never been in a hospital in my life except when I was perfectly well. A hospital had been a service station where I was relieved of my tonsils, and later, my babies. This hospital was different. For one thing, it was full of children, children from all over the city, the state — from all over the country children came to this famous hospital. Not one of them was perfectly well, and my Elly, cheerful in her pretty dress with no idea of what was about to happen to her, was not perfectly well either.
Elly was to be admitted at ten o’clock. There was some waiting in the lobby; she was already restless by the time we entered the elevator. There was some discussion with representatives of the administration. The ward where Elly would normally be put was full; she would have to go into another where there was more room. Occupied with Elly, we paid little attention. We had hoped to cushion our departure by making it quick and inconspicuous. Upstairs, however, it seemed there would be a considerable delay. Nobody in this ward was ready to think about Elly. Quiet and preoccupied, everyone here was obviously engaged in some serious business. We were shown into a four- bed ward, and left alone with Elly and her hospital nightgown and the small white crib we hoped a blanket and a teddy bear would convert into an acceptable home.
There was indeed room in this ward. Only one of the other beds was filled. In it lay a pale still child with sunken eyes, her curling hair a dark cloud rising off the pillow. She looked about nine. A thin tube ran from her nostril to some apparatus by the bed. Beside her sat her mother, her hair also dark and curly and her face nearly as pale. They did not speak, and when we came in they did not turn their heads.
Time passed. The crib, at 11. 00 a. m. , was no place for a healthy three-year-old, even for Elly. Perhaps that was progress. We tried to amuse her, at the same time remaining quiet and inconspicuous, for the sake of our silent companions, but there wasn’t much to do. She rocked a bit, but at length she wanted to get down from the crib. David went off to see how possible that was, and when whatever was going to happen was going to start. It turned out that it was quite possible. This was an extremely well-appointed hospital, better than I could have imagined. Here was a playroom filled with the most excellent toys, chalks, a blackboard, a television set. There was even a kitchen visible through a door. No one w
as ready to be occupied with Elly; they were delighted to have us take her there. We got her out of bed and set her on her feet. Her steps sounded cheerful in this strangely silent ward. And then we saw that not all the patients were confined to bed.
As we entered the hall we saw, back in the shadow, a wheel chair, and a young girl in it, eleven perhaps, or twelve, it was difficult to tell. She was not in hospital clothing but wore her own blue dress. A woman — not a hospital attendant — stood behind her. The girl gazed at us, or beyond us, from eyes that were scarcely distinguishable in the midst of the blue-black circles surrounding them. Black eyes in a face inconceivably thin, and around it the same incongruous hair, straight and pale this time, but abundant, the hair of health. And then I saw her legs. From under her starched dress they descended into her white socks, the invulnerable white socks of an ordinary eleven- year-old, which surrounded the legs of this eleven-year-old like a frill, standing alone around still frail sticks with half an inch to spare. A child’s bone, I realized, has no thickness at all.
We have all seen pictures of such children, although not dressed with such decorum. We recognize them when we remember — the starved and outraged children of Buchenwald and Auschwitz. But this child was not in a death camp but a great modern hospital, there to be made well again. It crossed my mind that it would take a long time and very great skill to nourish this child back to health.
The obtuseness of the fortunate is beyond belief. It was not until we had been three hours in that hospital that we found out where we were. Of course. This was the ward for terminal cancer cases. These children were not here to be cured, they were here to die — with the best of care, hidden mercifully away from a society that has been so successful in shielding itself from the knowledge of death that two experienced adults could stare it in the face and still not know what they were seeing.
We were not smart enough to realize it for ourselves. It was from a mother in the playroom that we found out. While Elly sat and watched the meaningless shadows on the TV (there was none in our house, so the novelty was absorbing and welcome) she played a board game with her little boy. He was about seven, we thought — relaxed, outgoing, obviously extremely bright. He and his mother laughed a lot and talked to us and to the third child in the room, a three-year-old with a large plaster on his back. The seven-year-old sat in his chair and didn’t get up. Aside from that he didn’t seem sick. But as soon as the nurse wheeled him out for treatment his mother asked us what must have been in the minds of the other mothers too: what was Elly doing here?
Her bright little boy had leukaemia. Right now he was very well, since he was having his transfusions — he had just gone for another one. He was still able to be at home; when he got too weak she brought him in for another transfusion. After a time — you couldn’t know how long — she wouldn’t be able to take him home again. The mothers were encouraged to spend as much time here as they could. That was why they provided the kitchen, so they could cook the things the children liked and perhaps they might eat a little… the toys were here if they wanted them… it took a long time sometimes. The girl in the wheel chair had been brought in in April with a week to live and here it was June and she was still sitting up…
The bright little boy came back in again. So I had seen his future, out there in the hall.
I looked at Elly, busy doing nothing. Part of us is still a child, and thinks the universe should be fair. What had gone wrong? If Elly could not have that boy’s sharp mind and bright spirit, could he not at least have the health she had no use for — health in which for the first time I felt not pride but shame?
But her health was not so easily to be given away. At last they were ready to admit her. We were sent off, and the doctors came. Dr Blank’s report, which I am glad I did not see until long after, describes her as she appeared to the eyes of science: ‘The record shows that she was a well-developed, healthy- appearing, blonde, blue-eyed child found hiding under a blanket and rocking in her bed. She cried during most of the examination and no words were spoken. Her head was normal in size… interior fontanel closed… ears and eardrums entirely normal. Her pupils reacted well to light and accommodation… Nose was normal, her mouth unremarkable, her tonsils moderately enlarged. She had no unusual lymph node enlargement. Heart, lungs, and abdomen were normal… Examination of her cranial nerves, her deep tendon reflexes and motor and sensory reactions were all within normal limits. Her gait was normal.’ Haemoglobin and urine were normal. ‘The electroencephalogram was normal in deep sleep. Skull X-rays were unremarkable. Serum for measles antibody complement fixation test was negative.’
So she was quite healthy. She had always been healthy; that last sentence meant that as far as tests could tell she had not had measles in the womb and her condition was not due to any assumed encephalitis. She was healthy now, as far as medical techniques could tell. Dr Blank, a true man of science, made it clear that that was not very far. That he had been able to find no metabolic defect did not mean that there was none. There was no sure diagnosis, either. Elly’s intelligence was still an unknown quantity; it had proved impossible to test her. Insofar as he proffered a word at all, it was autism. Mercifully, he spared us the other terms, so much more threatening — childhood psychosis, childhood schizophrenia. He knew we’d find them out soon enough. The articles to which he referred us were all studies in Kanner’s syndrome. But even autism was uncertain. ‘In many ways she seems to be an autistic child, relating poorly to the other children. Her apparent early normal development reaching a plateau, her interest in small objects and their orderly arrangement, her failure in speech — all would fit into such a picture. On the other hand, she enjoys being played with physically, she likes to have her parents enter into the “games” she uses, and these findings do not fit well.’ The tickling we had suggested, the candy she had fed me, had complicated the diagnosis. It occurred to me later that if he had seen her only as he did in the hospital, rocking under her blanket, too bruised to respond to the overtures that had worked so well in his office, his diagnosis might have been less ambiguous. How many ‘classic’ cases of autism are diagnosed by doctors and psychiatrists who have never seen them among familiar friends in a relaxed environment?
At any rate, he had no particular advice. ‘Take her home,’ he said, ‘do what you’ve been doing… give her plenty of affection… let me know how you get along…’ A little shrug of helplessness, sympathy, regret. This was a good and kindly man, too intelligent and accomplished a doctor to pretend certainty where he found none. For that we admired and trusted him.
In a way it made no difference not knowing what ailed Elly. But the mind craves explanations, the will craves situations that can be faced and adjusted to. Here there was nothing to face and no plans to be made. This was not the retardation we had feared, but which we could have at least accepted as final. If we could be sure that Elly had no capacity for normal development we could accommodate ourselves to that. Perhaps, for her sake and ours, she should be sent away — like Uncle Will. But autism? What was autism? How could we adjust to an unknown? To live with autism would be like living under water. We might never come up, yet we had not the option of drowning.
In the old days I had wondered more than once if my fortune had not been too good. Half as a literary exercise, I had mused about what life had in store for me, guessed that if the poets were right there must be waiting some whips and plagues to set the balance right. After my childhood ended I had so much luck — dear husband, friends, my lot cast in pleasant places, all, somehow, summed up in my golden babies, born to comfort, cultivation, intelligence, beauty, health. It is hard not to be proud of one’s luck. Hubris is part of us; knowing its name does not help one escape it. Irrationally I had felt that in some way I had deserved all I had, that I had made it happen. We deserve nothing, except to be human comme les autres. It is a slow lesson; the mothers in the hospital had learned it. ‘Call no man happy before he is dead,’ said Solon. The instrument chosen
to humble me had the exquisite appropriateness the Greeks noted in the operation of impersonal powers like Fate — or Biology.
4. Willed Weakness
‘On the other hand she enjoys being played with physically, she likes to have her parents enter into the games she uses, and these findings do not fit well.’ We were thankful for these findings, and that they did not fit that most hopeless of possible diagnoses. It suggested that the condition was not entirely hopeless after all. It could be modified. We had modified it already. It was natural enough that Dr Blank should think that the pathetic, rudimentary reciprocity he noted was spontaneous. Only we could know it was not. The uncertainty of his diagnosis was our best reward so far for our work with Elly.
At that time we had been at work for twelve months. For a third of her short life Elly had been under siege. As soon as she had come out of the hospital for the first time we had begun to devise our strategems. These next chapters will describe them, and with them Elly’s progress from twenty-two months, when I first began to keep a written record, until the age of four. Later development will be described in its place.
I have written already that when we brought Elly home that first time, speechless, uncomprehending, still unable to walk, we did not want to fool ourselves. The doctor had felt she was still classifiable as normal. Yet we grasped well enough that this low-grade normality was no normality at all given the environment Elly lived in. Institutionalized babies, perhaps, or children bewildered in distracted families where speech was rudimentary and noise constant, might indeed appear like Elly and still be normal, having good reasons for the simplicity of their accomplishments. Not Elly. Who among the parents we knew had a normal child as slow as that? To dwell on Elly’s alertness, to play with the idea that she was simply withholding her abilities-this seemed the most soft-headed kind of self-deception. The child was retarded — after all, the word does have a literal meaning. She was retarded in what she did. How was it possible to make a distinction between what she did and what she was? Why should we imagine that her retardation was ‘different’? We are proud people, and proud people do not like to feel soft headed. So we did not want to fool ourselves.
The Siege Page 4
