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
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.
Yet at the same time we were determined not to abandon Elly in the isolation she found so congenial. To treat so marginal a child as retarded would itself ensure that she would become so; if she were in fact retarded it would make her worse. Once I had been glad of her self-sufficiency; now I must fight it. She must be approached, played with, taken places, drawn into the family. She had liked being alone, she had spent hours in her crib, sleeping, bouncing, laughing, rocking, rocking, rocking. All that must now be at an end. little as she appeared to want our company, she would have it. She might be content with the rise and fall of a chain; I must find better toys and try to lead her through them to more complex experiences and skills.
It would have to begin with movement and the sense of touch. Compared to touch, hearing and sight are indirect, remote, far less central to the living organism. People can exist without sight or in total deafness. They can be so preoccupied that they neither see nor hear the world around them. Touch them, however, and they will come to themselves. Touch is the most directly apprehended of the senses. The body’s response to things that touch it ceases only with death.
