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 essentially falsified. Dr Spock is a psychiatrist, and he has tried to tell us that babies are tough, but we have been rendered too nervous to listen. We hear on every hand that what we do in the first months of life — it may be six, or twelve, or twenty-four — may mark our child for ever. Who are we to qualify this account of our responsibility? Even the parents of normal children move with a certain knowledgeable edginess. What goes through the minds of pare
nts who know they have a child whose development has gone wrong? Bettelheim writes that parental rejection is an element in the genesis of every case of childhood schizophrenia he has seen. [7] Beata Rank sets out as her ‘main hypothesis’ that ‘the atypical child has suffered gross emotional deprivation’, and adds that ‘the younger the child, the more necessary is it for us to modify the mother’s personality’. [8] Even the wise and humane Erikson, though he remarks that the rejecting mother is the ‘occupational prejudice’ of child psychiatrists, reiterates in the same study that a ‘history of maternal estrangement may be found in every [italics mine] history of infantile schizophrenia’ [9]
In this respect it made little difference whether what ailed Elly was called schizophrenia or autism. Kanner’s original hypothesis was consistent with the psychiatric consensus. He considered that the parents must play a lage part in the genesis of infantile autism. Certainly (like Erikson) he took account of a possible constitutional predisposition in the child; he reported that many autistic children (unlike Elly) were manifestly unresponsive from earliest infancy. But in his discusion of aetiology he devoted far more attention to the role of the parents. In the process he discovered some curious facts, facts that, since they in some sense affected how we thought of ourselves as we lived with our situation, it is necessary to summarize here.
I have already said that my husband and I are typical of the parents of autistic children. I must now make clear what this entails. Early in his work Kanner was struck, not only with how similar one autistic child was to another, but at the unexpected similarity of their parents. The fathers of the first eleven cases Kanner saw included four psychiatrists, one lawyer, one chemist, one plant pathologist, one professor of forestry, one advertising man, one engineer, and one successful businessman. Of the eleven mothers, nine were college graduates. Hardly an average group, one would think; yet as Kanner collected more cases he found that the pattern varied very little. Almost without exception, the parents of his autistic patients seemed unusual both in their intellectuality and in their professional achievement. Naturally it occurred to him that he might simply be registering characteristics shared by all the parents who brought patients to an outstanding child psychiatrist at a famous research centre. Accordingly, he checked his impressions. He took out the file of each of his autistic patients, and the file directly next to it in his cabinet. These control files represented a random cross-section of his practice — children suffering from the full variety of conditions a modern child psychiatrist sees. Kanner compared the two sets of parents. He found that statistics bore out his impressions. The ‘autistic’ parents, as a group and individually, had more years of education and significantly higher professional competence. Moreover, they differed in another particular, especially from the parents of schizophrenic children. The incidence of recorded mental illness among them and even among their families, was unusually low. Whereas schizophrenic patients had in their families more mental illness than is found in the populaton as a whole, the autistic patients had less.
Kanner began to study more closely the parents who had produced, out of such apparently strong material, such pathetically deviant children. He began to dissolve the idea of ‘professional achievement’ into the less measurable characteristics which make achievement possible. He found in these parents, in addition to intelligence, an unusual degree of energy and persistence, as well as a capacity to control both events and their reactions to them. As he observed them in his interviews, where they might be expected to be under considerable stress, he found them a very reserved group. The capacity of these parents for detachment and objectivity seemed to him extraordinary. It is not surprising that he was led to try to relate these unique group characteristics to the unique condition he was trying to understand.
If a group of parents differed from the average as extremely as these seemed to, was it not likely that they had treated their children differently? The combination of drive and detachment may augur well for success in a profession; it is not so well regarded as a qualification for bringing up a child. To Kanner, these parents seemed too detached, too controlled. They seemed, in sum, a cold lot — ‘detached, humourless perfectionists, more at home in the world of abstractions than among people, dealing with their fellow-men on the basis of what one might call a mechanization of human relationships’. [10] One of them, a prominent surgeon, even affirmed in response to Kanner’s question that he wouldn’t recognize his children if he met them on the street. Kanner came to think of the group as ‘refrigerator parents’ — ‘able to get together just long enough to produce a child’. There were exceptions — about ten per cent of the group seemed warm and responsive. And of course the deleterious effects of their personalities were not universal; virtually all the autistic children’s siblings were normal, and indeed except in the case of identical twins autism rarely visits the same family twice. But in general the profile seemed clear enough.
When my husband and I read these characteristics in Dr Blank’s reprints we did not find it hard to recognize ourselves. Objectively we belonged in the group; we had a Ph.D. and an M.A. , and the nearest we had come, before Elly, to mental illness was a single great-uncle who had spent a few years in a sanitarium. Subjectively we felt, both of us, the acute shyness that defended itself as reserve. We both knew what it was like to cross the street to avoid an acquaintance seen fifty feet away — not because of any anticipated unpleasantness, merely because one is not always able to sustain the effort of finding something to say. We were both capable of detachment; sustained thought is rather difficult without it. We had both been bred to self- control, and perhaps born to it. Four times I had discovered that one of the difficulties of having a baby is that nurses won’t give you so much as a sedative if you can’t scream. We were well suited, my husband and I. These characteristics had brought us together and kept us close. They had served us well. Most of them had seemed to be strengths. We saw them now transmuted into pathology.
Time had taught us, we thought, to live with our shyness, to fight it, increasingly to transcend it. But it is easy to deceive oneself; psychologists know that. Consider — as I considered — this sketch of the mothers of ‘atypical’ children as I read it in one of the books my solicitous friends lent me:
On the surface these mothers may give the impression of being well-adjusted; not too rarely they are highly intellectual, prominent people. Close investigation reveals that the majority of them are immature and narcissistic with precarious social contact… who have struggled heroically to build and maintain the image they have created of a fine woman, wife, and mother. The nearer to perfection die success of their efforts, the stronger their belief in magic and their own magic (impenetrable defences)… In spite of the outward appearance of self-assurance or worldliness, there is inner isolation. This type of mother tends to function on two levels: the surface level in contact with the outside world is a thin crust only, overlaying a strong tendency to detachment. When this dual level of functioning is a constant way of living, it bespeaks a serious disturbance.
The article then got down to cases.
The picture which Mrs I. had of herself and which she successfully communicated to the world was that of a well-educated, vigorous, charming woman with many abilities and a host of satisfying interests. She had in fact obtained a graduate degree and had achieved success in her professional career… The personality behind this facade was gradually revealed to us during the course of Mrs I.’s therapy. We came to see her as a very isolated person who tries to combat her perception of her own emptiness and her tendency toward withdrawal by precipitating herself into constant activity and excitement. [11]
I would have been obtuse indeed not to reflect that the therapists who on close investigation had revealed the reality below Mrs I.’s facade might uncover something very similar below mine.
These were threatening ideas to confront. Yet somehow they did not take hold.
It is hard to see why we were not c
rushed with guilt. Not long ago, in a television programme on autism, I heard a distinguished psychiatrist say that ‘of course, all the parents feel guilt’. Even a close friend, a psychologist herself, once suggested I should have an analysis ‘to work my guilt-feelings through’, and I don’t think she believed me when I told her I never had any. I should have. Even if I had not been a typical autistic parent, I had been far from welcoming my pregnancy with Elly. I knew that and so did my friend. It would have made good Freudian sense for me to fear, as I slowly awoke to the severity of Elly’s condition, that she rejected human beings because her mother had rejected her.
The dogma that all parents of the psychotic must suffer guilt- feelings is well based. Popularized psychology has encouraged a high level of free-floating anxiety even in the parents of normal children. The situation is made worse by the fact that a disproportionate number of abnormal children in general, and of autistic children in particular, are first children. Their apparent rejection of love is more terrifying because their parents have no 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.’
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