experience of the affection of normal children; their bewildering behaviour is, to uncertain and inexperienced mothers and fathers, more bewildering still. It would be hard indeed, in today’s climate of opinion, for the parents of a seriously deviant first-born child not to feel they were in some way responsible.
But we were lucky; we had Sara, Becky, and Matt. Responsive as well as intelligent, they functioned well in school, in the neighourhood, and at home. If it is fair to lay failure at the parents’ door, as much should be done for success. It was of course possible that our success, like Mrs I.’s, could be dismissed as a facade, its hollowness shown up at last by this small, atypical baby. Occasionally, in nightmare descents into compulsive objectivity (after all, objectivity was part of our syndrome) we might see it that way. But these nightmares could not stand the light of day. A look at our children would dispel them. We were proud of them. We had done a good job with them. We knew it, and knew that others knew it. This knowledge and this pride sustained us as we read the formulations of the Bettelheims of this world — this, and a certain natural scepticism which had been with us even before Elly made us need it. No scientist’s household, after all, can fail to be familiar with the great procession of plausible hypotheses that have yet proved incomplete or false. My husband’s discipline, and common sense itself, warned constantly of the dangers in the premature formation of hypotheses; for his graduating seniors he had copied down the great cautionary words with which Newton closed his Principia: ‘The true reason of these properties… I have not yet been able to deduce from the phenomena, and I frame no hypotheses. For whatever is not deduced from the phenomena is to be called a hypothesis, and hypotheses, either of metaphysics or of physics, of occult qualities or of mechanics, have no place in experimental philosophy.’
So even as we began, slowly and reluctantly, to read a little more, we were not disposed to blame ourselves. Now, when I have talked to other parents of autistic children, I know what agony we were spared. We knew we had been the same kind of parents to Elly as we had been to the others. I knew I had been the same kind of mother. Elly had been warmed, cuddled, tickled, and loved. Experience with three children had taught me that the mind- reading powers of babies are greatly exaggerated. I knew that Elly had never guessed that (like so many mothers of normal children) I had not really needed another baby.
But I had had another baby and the baby needed help and so did we. We had sought expert medical advice and taken it. Yet how can one be sure one has done all one can? There are so many possibilities of help. An acquaintance stopped me in a supermarket; she knew of a man in Philadelphia who prayed with the parents of abnormal children and had remarkable success. A good friend wrote of a friend of hers, a theosophist and clairvoyante who was working with doctors in New York; she read auras. Later, others recommended the work of the rehabilitation Institute in Philadelphia; no one understood how, but by a demanding programme of physical therapy it was apparently possible to restore a large measure of function to the brain-damaged of all ages. Perhaps Elly could crawl her way to health. It is not with irony that I record these suggestions. Irony comes easier when you’re not in trouble. I have Catholic friends who pray for Elly, and I, who cannot pray myself, can use their prayers. If the friend who read auras had lived within convenient distance I might well have taken Elly to visit; I knew already that some individuals had powers with Elly that seemed near-magical. In a desperate case one thinks carefully before one rejects any course of action that responsible people think holds out some hope.
Many responsible people thought Elly should have psychiatric attention. One of our dearest friends actually knew a psychiatrist at a renowned children’s institute; they cared enough about us to discuss Elly’s case with her and tell us what she said.
Extraordinary things, it seemed, were being done with children like Elly, especially if you got them young enough. Time was passing. Elly was three and a half. Every month counted. We listened, and knew that we could never justify it to ourselves if we did not find out what possibilities psychiatry held for her. In the climate we lived in we could get by without crawling, or auras, or prayer. It was clear, however, that whatever Dr Blank said or Kanner reported, if we did not try psychiatry we would never be able to feel we had done all we could for Elly.
Once the decision was taken I was eager. I would no longer have to work alone. Desperately I needed helpers; at last I would have them. As I told my psychologist friend, ‘After a while my mind just gets exhausted. There are times when I can’t think of anything new at all. They have so much experience — they know so many play techniques they could show me .’
‘Oh, I don’t think they’d do
We wrote Dr Blank. Noncommittally he agreed. I suppose he knew that the intellectual parents of a strange baby would not long be allowed to accept the irrelevance of psychiatry. We got in touch with the renowned children’s institute, in a city not impossibly far from our home. In treatment and research it was one of the most active in the country. We wanted the best. This was another decision we did not intend to appeal.
So began an experience as penetrating as our sojourn in the cancer ward, and more far-reaching in its effects.
The Institute’s approach was reassuring in its thoroughness. For a proper diagnosis, Elly should be observed over a ten-day period, and both my husband and I should be interviewed at length. For us to get away for so long was not going to be easy. The interviews would have to be scheduled in the short period between teaching semesters, and well in advance so we could get my mother to come stay with the other children. Knowing this, we had got in touch with the Institute early in December.
They were very understanding; they would get in touch with us to give us an appointment soon, very soon. We need not contact them. And then it began. We waited, with increasing anxiety, as December stretched into January and our semester break drew nearer. If we missed this chance we would have to wait four more months, and did not every month count? No letter came. It was six weeks before we were frightened enough to telephone. We got our appointments on three days’ notice. Luckily my mother was coming on the chance, or we could not have got away.
We were learning what we could never have guessed; that the Institute, although theoretically aware that human beings exist in social contexts and that family life is complicated, was not interested in visualizing any detail of the life that went on outside their large, comfortable building. They had no concern with the difficulties of providing for our children in the longest absence from home we had ever had. They had scarcely more interest in what we were to do with Elly during our first interview. We learned with some astonishment that we were not to bring her. Not to bring her? Where could we leave her? Surely at so well staffed an institution there were people with whom she could stay while my husband and I were interviewed? Apparently not. It was not their practice to allow parents to bring the child at the first interview. Luckily we were staying with kind friends who knew Elly a little; we could leave her with them without too much uneasiness. But we wondered about the other desperate parents who had brought children here from all over the country. Did they all have friends who were capable of baby-sitting for small psychotics?
But we were reassured all over again as we walked in the door of the Institute, a huge old house in a run- down section, shabby and pleasant and not at all slick. We waited with a group of mothers whose children were in therapy upstairs. ‘It’s all very well for them,' one said, ‘but I wonder if they know what it’s like, never to even be able to go to the toilet without him in there with me.’ We’ve come to the right place, I thought. These people are in the same boat with us, and if this place is helping them it’s where we belong.
My husband and I separated for our interviews. It was not their practice to interview parents together, where they could supplement, support, and correct each other. My interviews were with the social worker, his with the psychiatrist. So it began.
The social worker explained first what the procedure would be: three interviews for Elly with the psychiatrist, the same one who was seeing her father, an intelligence test, a session in the diagnostic nursery school, and a neurological examination. We would have to discuss what time would be best for the electroencephalogram.
‘The electroencephalogram?’ I remembered the disoriented baby, hair still coated with jelly, I had taken home from the hospital eight months before. Must Elly go through that again? ‘But she’s
Elly need not, then, repeat the electroencephalogram. But it was not their practice, she explained, to look at the history until they themselves had assessed the case. They had their own methods of finding out what they needed to know.
