that children soak up their parents’ attitudes, we schooled ourselves as best we could never to treat what had hit us as a tragedy or a visitation, so that the children would not feel it so. To regard our common task not as a burden but as a privilege was wishful thinking at first, but it helped it become one. It worked for us as well as for the children. The front we kept up for them sustained us too, until the assumed attitude became (almost) the real.
Almost. I will fool no one by making it sound too easy. We kept our act up well with the children, but now and then, alone with Elly, it did not work so well. One was not always gay then. But curiously, because Elly was what she was, it did not matter much. Certainly it was important to be positive and cheerful when one was in contact with Elly. But most of the time one was not in contact; that was the whole point. The sensitivity to mood a normal child is said to exhibit was simply not there. So when she was looking beyond one or absorbed in her chain one could slump into passivity — stare into space oneself, weep if one needed to, even, occasionally, cry out. She would not take note — which might or might not make one feel better.
And we need not pretend that for the children either we succeeded in making every rough place smooth. I remember one awful week when Elly’s routine had been uncertain and disrupted. She was anxious and fretful and we could not calm her. We were in a strange house, cooped up together by bad weather; everyone was on edge. One of the children cried out, with tearing intensity, ‘We ought to send her away! She ought to be in an institution!’ The words came from the gentlest of the three — the one who never seemed to ask for anything for herself.
No such words had ever been spoken before. There was little to answer, and yet one had to say something. I said the obvious — that we all felt that way sometimes and that it would always be something we could do but that now after we’d all worked so hard and she’d begun to love us a little we could imagine what it would be like to visit her in an institution and to find she’d forgotten it all and didn’t even recognize us. I don’t know if it was the right thing to say. No one has ever mentioned it again.
Elly has lived with us and the experience has been kept manageable. It’s well to claim no more. One day, perhaps, my children will tell someone else of suffering I did not guess. But we have managed. As the children have grown older — the eldest is ready for college now — they have not tried to hide Elly or dissociate themselves from her. At home and at school they seem comfortable about themselves and her. They take her about with them without embarrassment. Their friends come to the house, and they show off her weird abilities with some pride. And I am not really surprised. If I had any faith in all this business it was that we had good children, that they could help Elly, and help us, and help themselves through helping. We were uneasy over many things as Elly grew, but over this one thing we were profoundly at ease. We never thought that it could injure our children to discover that there was a real world in which all were not fortunate, and where those who were had obligations to those who were not. I have written already that they had grown up in an ideal place, if an ideal place is one which is free from insecurity and danger. It should be clear by now that I am by no means sure that it is. James wrote years ago of the need to find the moral equivalent of war; I think we may also have, today, a need to find the moral equivalent of poverty, of illness, of sorrow in the privileged enclaves from which we have almost excluded them. At any rate, I have never been sorry that our children had this trouble in the midst of all their good fortune. Our ancestors would have said that we all have our cross to bear. Our vocabulary is different, but the meaning is precious and should not be lost. The children have not grown up poorer for having Elly in their family. I think they feel this to some degree even now. Later they will know it.
9. The Professionals
Elly was past three and a half before we took her to a psychiatrist. Dr Blank, of course, could easily have referred us to one, probably in his own building. Instead, he told us that Kanner, himself of course a child psychiatrist, had tried the techniques of psychotherapy on autistic children and found them useless. In the current state of knowledge there was nothing that medicine or psychiatry could do. We should continue as we had been doing and keep him informed. And for six months this is what we did.
But we did not live in an intellectual vacuum. In New York or Boston it would have happened sooner, but even in a small college town the invisible presence of psychiatry began to press upon us. Somebody knew of Dr Blank; his reputation as a paediatrician was excellent, but his anti-psychiatric bias was well known. Somebody else was troubled because ‘no one was working with Elly’. Somebody else asked if she would not be better off in a residential school, where they could give her the kind of care she needed. We were lucky; our friends were civilized and tactful. Nobody said the harsh things they could have. But the implications were there. I could not answer them. I could not say that Elly, in the give and take of a family we had struggled hard to keep cheerful and normal, was getting far more of what she needed than she could in a residential school, in the mournful company of others like herself. I could not answer that I was working with Elly, hours every day with no traumatizing terminations of treatment when the therapist took a vacation. I was not yet sophisticated enough to realize that I was working under unusually favourable conditions, since my contact with the patient centred around the especially sensitive experiences of awakening, feeding, and putting to bed and it was easy to arrange that her major gratifications came from a single operative (me). I could not speak such heretical thoughts; I could do no more than allow them to hover at the edges of my mind. I might think in my tougher moments that the things I did were no odder than the things the psychiatrists did in the two books of case histories that interested friends had lent me — indeed they seemed very similar. But these moments were succeeded by others, in which I feared that as soon as a real psychiatrist learned about our games he would recognize them for what they were — a mother fooling around, lucky if in her inexperience and deep involvement she merely escaped doing harm.
For how likely was it that she could escape it? Alone, without professional guidance, what possible qualifications could a mother have for working with her psychotic child herself?
It is necessary now to introduce this word, and with it the subject of nomenclature. For we were finding out that there was no agreement on the right label for Elly. ‘Autistic’ meant to Dr Blank, and now to us, the sum of the specific elements of Kanner’s syndrome, all of which appeared in Elly. To many others, however, the word still held its broad root meaning of ‘totally self-absorbed’. This was the way the celebrated Bruno Bettelheim seemed to use the term, and he applied it freely to children who by Kanner’s criteria did not seem autistic at all. [5] He also used, as did many others, another term: childhood schizophrenia. This seemed to apply not only to Elly and her kind — if she had a kind — but to a wider range of children who exhibited a few of Elly’s symptoms with many others of their own. We began to be aware that there were rival ways of classifying — that professional psychiatrists could argue whether Kanner’s syndrome was a distinct condition, a sub-species of childhood schizophrenia, or synonymous with it. Some begged the question by calling it ‘a typical development’. Some denied it existed at all. Yet all these were at least in agreement that the condition should be classified as mental illness or psychosis. A smaller group of observers, including the Dutch psychiatrist Van Krevelen, considered it the result not so much of illness as of a constitutional defect, to be classified not under schizophrenia but under oligophrenia, or feeble-mindedness. This minority opinion, however, hardly penetrated to us — it was only faintly suggested in the reprints Dr Blank had referred us to. The weight of American opinion was overwhelmingly in favour of describing the condition as a psychosis. The application of that word to Elly had been ratified by the most objective of agencies, our insurance company. The expense of Elly’s hospital diagnoses had been, in part, covered by insurance because her trouble was no mere behaviour difficulty, not even a neurosis, but a genuine psychosis. Elly had met the standards; the form had it down in black and white. For what it was worth, Elly was psychotic. And no one was working with her but her mother.
The situation was preposterous on its face. The very dentist, when I brought in a terrified Elly for an open cavity, suggested that she would be easier to manage if someone else accompanied her. (Someone else did and she wasn’t. ) Everyone knows — I know myself — that the mother may be the last person who can handle a child. And this popular wisdom is today massively reinforced by professional opinion. The last people who ought to be able to work with a ‘disturbed’ child are its parents, for who, after all, disturbed it? The disturbance, after all, did not come out of nowhere. Nobody could be expected to believe that.
Babies, we are told, are infinitely vulnerable. Before they can sit or crawl they may feel the coldness of rejection. Their parents may injure them by neglect; they may injure them by fulfilling their needs too quickly. [6] A child’s first years are all important — psychologists tell us this in many ways in many places, and if we do not read psychology we get their message from the mass media, vulgarized but not
