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.
At one point he mentioned my notebooks. ‘We read them,’ he said. We waited for some comment on all that work. ‘They were very interesting,’ he remarked.
The interview lasted only forty minutes. We were still trying to find the magic questions when it ended. But there was no more time. We had had it.
We walked slowly down the steps of the homelike building that had turned out to be a model of Kafka’s Castle. We had come prepared for bad news; we had expected to leave shaken and upset and drive back immediately. Instead we could only laugh helplessly, and went and spent a lovely afternoon in a museum. [12] It was only gradually that we began to feel angry and resentful, to react as intelligent adults, not as obedient children in the hands of those wiser than we. Our powers of indignation reawakened — indignation at this pleasant, passive, blandly inconsiderate institution, at their incredibly casual scheduling, which multiplied difficulties and intensified anxiety, at the attractive, softly smiling social worker whom the passage of time had made forget the number of my children, at the cloudy, gently evasive old man who would tell us nothing unless we surprised him into it. We fed information into that computer for ten days. And when finally we were allowed to press the button, the light didn’t even go on.
Yet we were not where we had been. Elly needed psychotherapy. We must try to get it for her. There was no children’s specialist near us, but there was a state child-guidance clinic in the next town. Should I contact them? The Institute definitely thought I should.
I did, prudently waiting a month (though every month counted) to allow the Institute to respond to my request to forward their report on Elly. I arrived for the intake interview; the clinic had received nothing. Two months later I made a progress report for Dr Blank, who had not seen Elly for a year. Of course, I remarked, this was only a supplement to the Institute’s report, which was by now in his hands. But it wasn’t, and for a very good reason. It wasn’t written yet. It was not put on paper until six months after Elly’s last interview, and then only after I appealed in desperation to the Institute’s director.
And yet when I compare our experience with others I see that again we were lucky. They treated us well, according to their lights. I was accused neither of rejecting my child nor of a symbiotic relationship. The director of a clinic for autistic children, part of a huge medical centre, has written that one of his greatest problems in treatment is the resistance parents make to the idea that they cause the disease. We might have gone there.
We got off easy. The professionals had neither praised nor blamed us and they had done their best to say nothing discouraging about Elly. They had said nothing terrible to us at all. Yet we emerged damaged, hurt, and frightened. We had gone in with expectations that, to those with no experience of the field, will not seem unreasonable. We expected to talk with wise and sympathetic people — wise because of a wide experience with sick children, sympathetic because it was their vocation to help those in trouble. We too had experience with a sick child, intense and prolonged if not wide, and we had been trying with every resource we possessed to help those in trouble — our baby, our normal children, ourselves. We were amateurs. They were professionals. But we had, we thought, a common task. Unconsciously we expected to be welcomed, not as patients, but as collaborators in the work of restoring this small, flawed spirit. We were doing something terribly hard, and we had been doing it quite alone. We had learned all we could from the biography of Annie Sullivan. We wanted information and techniques. We wanted sympathy — not the soppy kind; we were grown-up adults — but some evidence of fellow feeling, which ordinary doctors give readily enough. And — was it so unreasonable? — we wanted a little reassurance, a little recognition, a little praise. It never occurred to us that these expectations were naive, that the gulf between parent and ministering institution must deliberately be kept unbridgeable by any of the ordinary techniques of interpersonal relations. It should have been easy, after all, to say it: ‘Look, you’re a professional. I need references, I need to find out about play therapy, I need to know all I can about children like Elly, because whoever else may or may not work with her, her main psychotherapist is me.’
But of course it was not easy but impossible. Their system made it so. Autistic was not a word they used. They were wise to avoid it, it fitted them so closely. We knew that imperviousness, that terrible silence, those eyes that turn away. And this was the most frightening discovery of alclass="underline" that we could make better progress against the walls around Elly than we could in reaching these people.
Comfortable, well-educated members of the upper middle class ordinarily escape the experience of depersonalization, of utter helplessness in institutional hands, of reduction to the status of children to whom situations are mediated, not explained. Like so much that hurts, the experience is deeply educational. We know now in our skins that the most threatening of all attacks is the attack on the sense of personal worth, that the harshest of all deprivations is the deprivation of respect. We know now, I think, how the slum mother feels as the welfare worker comes round the corner. It takes, one would think, so little knowledge of psychology to put oneself in someone else’s place.
The failure of the Institute was not a failure of knowledge. Ultimately they produced, though not for our eyes, a reasonably detailed report, far fuller than the three oracular utterances they had trusted us to hear. Their failure was one of imagination. For all their silent attention they were not able to imagine the thoughts and feelings of my husband and me.
I think I can guess how we appeared to them — highly intellectual, cool, controlled, well-informed, prime examples of Kanner’s parents. We were controlled; we had no alternative. Refrigerator professionals create refrigerator parents, if the parents are strong enough to keep command of themselves at all. I had gone in in a highly emotional state, ready to tremble, to weep, to dissolve in gratitude. Received not even with reproaches but with no reaction at all, I of course dried up my emotions at once and met professionalism with professionalism. The type of personality Kanner observed, with its control, its reserve, its capacity for detachment, may seem invulnerable. A wise healer of souls will realize that it is for that very reason particularly vulnerable. In the light of my new experience I remembered the tale of the father who admitted he would not recognize his own children on the street, and I wondered if this classic reaction had not in fact been the irony of an unhappy man whose response was simply to shrug his shoulders and fall in with the hypothesis of the doctor who could misunderstand him so utterly as to dare ask him such a question.
12
Elly’s father adds: ‘A museum was a natural choice. An artist communicates with us, even over time, by being very careful and loving and honest, by revealing all he knows.’