'Hypotheses non fingo.’ Everything works together, though we do not always see it. This was doubtless one of the reasons why, among all the things we had read, we had read so little psychology.
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 that,’ she answered. Later I remembered those words.
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 had an electroencephalogram! She’s had a lot of tests, she was in the Children’s Hospital for three days. Wasn’t it down in her history?’
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.
These methods are familiar enough, I found later, to those who know something of analysts and social workers. We, however, were quite unprepared. The situation seemed normal enough — two people alone in a room, one seeking information and help, the other able to give it. As teachers and as people, my husband and I were familiar with both positions. In spite of our shyness — perhaps, rather, because of it — we had learned much about bridging the gulfs between people. We were consequently slow to realize that the whole method of these interviews was so to set them up as to eliminate any possibility of a natural relationship between the two people in the room. The method was simple but rigid. We were not there to consult but to talk — to talk steadily, without guidance, without response,
to an almost totally passive listener who was studiously careful to betray no reaction and volunteer no comment.
In the best of circumstances one cannot talk naturally to a listener who makes no response. And these were not the best of circumstances. We were conscious that we were not ourselves. With our children, sick and well, we were firm and confident because we knew that our confidence was their security. Not here, though. Here we were on trial. Nothing had to be said about parental responsibility for infantile psychosis. I record it to the Institute’s credit that nothing was said. But the thought hung heavy. I tried to bring it out into the open. I imagined they knew of the paper I have quoted at such length earlier in this chapter; timidly I mentioned it. At least we could find out where we were. The response was admirably controlled. ‘You’ve read that, have you?’ was all the social worker said.
One could not talk naturally, yet so much depended on what the silent listener would think. In the absence of feedback, I tried to talk in the way that would be most helpful to Elly — to play it their way, insofar as I could figure it out, to be reasonable and obedient, to make sure that in the limited time available they got the information they needed.
My family, my pregnancy, Elly’s whole life — how could I get it all in? I began to take out the material I had brought — the photographs that showed the progress of the condition from babyhood, the notebooks recording skills, vocabulary, the games we played, their purposes and their results. ‘I began keeping these as soon as we suspected… they’re quite detailed. they tell about the work I do with Elly… if you could look them over you could ask me questions and we could go on from there. .
But of course the words trailed weakly off. It was not their practice… I put my records away.
Obediently, I talked. I have a good memory, I am experienced in the stages of child development, and Elly’s growth had engaged all my attention. I tried to cram in all the interviewer could have read in the notebooks, afraid some significant fact would be left out. I began at the beginning — the unexpected pregnancy, the depression, everything they might be expected to find usable. It was not for me to impose my standards of relevance on the material. It took me time really to take in the ground rules; I thought they wanted me to be informative and I kept trying to make it personal, trying — it was one of their words — to relate. It’s not normal for me to talk very long without some stab at a joke. Jokes relieve tension, they help make strangers friends. The social worker received my jokes with Oriental calm — the same calm with which she received everything I said, whether I told of anxiety, satisfaction, or pain. Only once did I jolt her. In describing Elly, I happened to use the word ‘autistic’. Instantly, sharply, she asked, ‘Where did you get that word?’ ‘Dr Blank,’ I said, ‘you know, the referring physician.’ ‘We don’t use that word here,’ said the social worker.
In another room, my husband was also trying to convey helpful, relevant information. Like me, he asked questions at first. There were so many mysteries about Elly. These people had seen so many children, they could tell us so much. But every question was courteously fielded; we would be able to ask that at the final interview. We stopped asking questions almost as soon as we stopped making jokes.
They were now ready to see Elly. Since it was not until late in her third interview that she was ready to remain alone with the psychiatrist, I was able to watch him with her. His behaviour was communicative if he was not. I watched him operate with clay, lollipops, the dollhouse. Elly took up the pieces of doll furniture one by one and methodically impressed a leg or an edge into the clay. She picked up the little toilet. I felt the quality of his attention sharpen, but she merely used it, like the other pieces, to imprint the clay. The psychiatrist spoke little; when he did, it was a gentle, reiterated, positive statement: ‘Clay [lollipops/puzzles/dollhouses] can be fun.’ I understood, I thought, why he said that, though I could not ask him. One day, perhaps, Elly would be able to take that meaning in.
I learned from his cautious, indirect approaches; I learned more from observing Elly among other strange children in the diagnostic nursery school. There was a huge mirror on the wall. I thought I guessed why, and made a note to get Elly a mirror on our return. I was fascinated by the IQ test. The tester did not quite manage to conceal her surprise when this uncomprehending child, who had no conception what the verbal part of the test was about and fretted because she could not pull the objects she was supposed to identify off the cards to which they were attached, still strung the beads, stacked the blocks in order of size, and slapped the stars and crescents of the twelve-piece formboard into place as rapidly as an adult. This was progress. At the hospital it had been impossible to test her at all. And I enjoyed the session with the neurologist; it was like being back among human beings again. She answered questions, we joked, laughed. I suppose she, a physician, had not been trained in the couchside manner. It was all right for her to relate.
So it was over. On the whole we had been impressed, especially by their skill with Elly, who at the end of her final session with the psychiatrist had gravely tried to follow him upstairs. I was not reassured when the very last day the social worker could still ask me ‘Does she ever smile?’ But that was my fault. I knew that their gentle caution had missed Elly’s gay side; I had wanted desperately for them to see us romping together, to watch her delight in ‘this little piggy’, her laughter when her father threw her into the air. Every day I had determined to ask if they would watch us play. One day I even came in an old pair of pants; in our gayest game, I would lie on my back and lift her with my feet, high into the air. But they never learned the reason for my odd costume; I played no games with Elly there. Surrounded by that cool detachment, I just couldn’t. So we took Elly home, there to wait for them to schedule the climactic final interview when all their observations would be synthesized and presented to us and where at last we could ask questions.
We waited. Again we watched every mail. (Every month counts.) We waited one and a half months. Finally the notification came and we travelled back to the city to hear the verdict.
This is what they had to say about Elly. It is not a summary of what they said. It is all they said, although the psychiatrist, a hesitant, rather inarticulate elderly man, took considerably more time to say it than it takes to write it here:
1. Elly needed psychotherapy.
2. She had performed above her age-level on the part of the IQ test she could do, and it was their belief that she had no mental deficiency.
3. ‘She has many fears.’
That is what they had made of all that information. We had been afraid we would not be able to tell them enough about Elly. Our fears were groundless. They were based on a misunderstanding of the purpose of the interviews. We had thought, naively, that these were a means of conveying information about Elly from us to the psychiatric team to aid in diagnosis. But since no use was made of the information, their actual purpose must have been something else. Those trained in psychology will perhaps know what it was. I can only conjecture. Perhaps it was to get us to reveal ourselves as people and parents. Perhaps not. For nothing was said about that either, for good or ill.
Of course we asked questions. We had been told we could. But no question we could think of could get the psychiatrist to add anything to those statements. He did not say she was like any child he had seen before. He did not say she was unlike any child he had seen before. We had hoped he would speak from his vast experience of abnormal children, but when we asked about other children at the Institute he suggested, vaguely, that every child was different. . He would give the condition no name, suggest not even a possible range of prognoses. I asked if there was any reading I could do. Case histories? I had got some ideas from them already. Hesitant before, he was suddenly firm. Case histories would be bad for us. I tried again. I had been impressed by the nursery school. There were, perhaps, books on nursery-school techniques for disturbed children? ‘Disturbed children? It was hard. . very hard… in fac
t it was very hard even to bring up normal children,’ said the psychiatrist to the mother of four.
What, then, were we to do with Elly? If we lived in the city, he said, Elly would obviously be a case for the Institute. But we did not live in the city, and there was no child psychiatrist within many miles of our small town. He could, perhaps, give us professional advice on psychiatric facilities in our part of the state. Well, there was a place only thirty miles or so from you, very well thought of, good people there… I knew already that they did not take pre-school patients, but he did not. We got again the feeling that the world outside the Institute did not exist at all.
Once or twice, by asking a question he did not expect, we got him to say something unplanned and significant. We were going on sabbatical leave; we had planned to take it in England. Should we take it instead in this city, where Elly could have treatment? Again he was firm; we should not disrupt the family’s plans for a process that might appear to yield nothing and breed resentment of Elly — for ‘we don’t work miracles, you know’. We salted that away. Elly had no mental deficiency, and she was not yet four. Yet a year’s psychotherapy might sink without a trace. So it was as bad as that.
The Siege Page 14