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 was 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.
