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. 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.