I had been doing this about four months when one day Elly happened to make five little sounds, ending with a rising intonation — ah-ah-ah-ah-A H! That was easy to imitate, and I did so. But this time, unlike all the others, Elly imitated me again. I imitated her back. She laughed. I tried two more sounds, choosing the explosive ba-ba and la-la she had learned from Joann and never forgotten. She imitated them at once. I then risked all and said ‘eye’, the word she’d learned so well and then abandoned. She repeated that too, full of gaiety and amusement.
We were in contact — not by means of touch, which is hard to ignore, but by sound, which is easy. It seemed a great leap forward, but by now we knew that Elly did not proceed by leaps. We kept the game going, and Elly continued to enjoy it. She herself made more complex sounds, almost as if she liked to hear me imitate them. She imitated more nonsense syllables. But she did not say ‘eye’ again. Nor, after that first day, could I bring her through noises to any other words, either abandoned or in current use.
But all this — head under the blanket, doll play, practice in imitation — was for one purpose: to bring her into contact with people. The evidences of progress were small, but they were beginning to accumulate. In the weeks before her third birthday, all these things happened. In the course of a tickling game, she poked me with her finger, to her great amusement. (It did not happen again for six months.) She fed me a candy, as she did a little later at Dr Blank’s, putting it into my mouth herself, not merely pushing my hand to do the work. When an elderly gentleman had held her hand and tickled it, she held out her hand to invite him to begin again. She even clowned a little for him, as a normal baby would. One memorable afternoon she spontaneously hugged her sister. Three or four times she pushed the children, not with the detached don’t-bother-me attitude we were used to, but with the first anger and hostility she had ever shown. It may seem strange to mark down anger as a sign of progress, but it too is a way of relating. It is better than indifference.
Yet it poses problems, especially when it occurs, not at home with one’s own children, where it can be mediated and explained, but with others.
From the very beginning I had gone out of my way to introduce Elly into social situations — to take her to stores and into crowds and to friends’ houses, particularly if they had children. It seemed the obvious thing to do, and it had not been difficult. Elly was too withdrawn to cause any trouble. She sat and walked about and sometimes played with unfamiliar toys, while I visited and hoped that her mere presence in a social milieu was doing her some good. But as Elly came a little way out of herself, her progress presented difficulties. On one such visit she actually noticed a friend’s baby; instead of looking straight through him as she had done before, she gave him a block. We were delighted, of course. But were we to be delighted when later, without provocation, Elly pushed him over with unmistakable hostility? I could welcome hostility in theory, but in practice, if we were to continue to go into society I could not encourage it. I had to say no-no and slap her hand. A week later when the same baby pushed her she did not push back. She slapped her own hand instead. From that time on she paid no further attention to babies.
Yet there was a general forward motion that helped us bear setbacks. As Elly approached four she abandoned doll play altogether and resisted all attempts to lure her back to it. But other things took its place. The new ability to joke and tease did not disappear. She spilled water on me on purpose, and laughed. She turned the light off while we sat at supper. Teasing is not an autistic activity.
We were able to establish a few reciprocal games — ones in which Elly too must play her part. Elly, who six months before would lackadaisically roll a ball back to you from twelve inches away, would now retrieve it with enthusiasm if you threw it several yards. Out on the wide college lawns, I could now do as I had delighted to do with the other children — crouch down and hold out my arms while a small, laughing creature came running from fifty feet away to end in my embrace. At two, Elly had played ring-around-the-rosy with me alone, for I could take both hands and make her dance; at three she would accept other members of the family in the circle; eight months later she included strangers — indeed, she accosted passers-by and peremptorily forced them to join the game. It was no longer difficult to introduce her to baby-sitters. I would place her in her swing, station the new girl to face her, and myself stand behind and push. The repeated, predictable approach and retreat seemed to operate as a model of a manageable human relationship, one from which she could always withdraw, as the swing would always swing back. For years I made sure that there was always someone in front of her when she swung. I looked for activities that could be made reciprocal. Elly looked on while I made beds. She liked to see me cover the pillows; she would motion me to pick them up. It was not hard, it turned out, to move her hands and so teach her to pick the pillows up herself and bring them to me — a beginning of training in giving which inside a year would make it possible for me to say ‘bring me’ and expect a response. Everything worked together. Speech, comprehension, use of the hands, social relationships developed inseparably. Everything fed into everything else. As time went on, Elly remained strange. In some ways she got stranger. But she lived more nearly among us than ever before.
One day, the month she was four, her brother flopped down on a bed. Elly — who had not put a doll to bed for six full months — gently covered him over with a blanket. My eyes filled. That was what all that had been for.
A few weeks later we were back at the drawing work. I made a circle and gave the crayon to Elly. With faint yet certain strokes she put four marks inside it: eyes, nose, mouth. Casually yet unmistakably she made a body and scratched in arms and legs. Elly, whose eyes six months before could not see pictures, whose hands had been too weak to press down a crayon, had drawn, not a triangle or an E, but a human being.
She drew another the next day, this time supplying the circular head herself. She drew it in the sandpile with a stick; she scratched it out at once. I would wait many months before Elly drew again. But I could remember this.
8. In the Family
This, then, was Elly, from babyhood until she was four. This is what she did and what we did with her. I have put down almost everything. So empty are the days of an autistic child that it is possible in a hundred or so pages to set out nearly the full content of the most concentrated and fertile years of a normal child’s experience. In the midst of our noisy, active household here was this cipher, this little island of detached simplicity, living its life, and we with our lives to live around it.
I knew the question so well: ‘But isn’t it hard on the other children?’ It is hard on the other children. In the first bad years it was very hard indeed. ‘Why doesn’t Elly talk?’ ‘I was younger than that when I talked, wasn’t I?’ ‘Is Elly going to be retarded?’ It is hard for children to sense that something is wrong and have no inkling of what it is, not even the security of a name to give it. Why didn’t Elly talk? We could not give them answers we did not have ourselves.
It was hard to be looked through by the pretty baby they were so ready to play with and love. It was hard for a little boy six and little girls nine and ten to put all their minds to choosing a Christmas present for their two-year-old sister’s first real Christmas and know that in all probability she wouldn’t look at it or them. It was hard to learn to be aggressive and yet not too aggressive, to know when to tickle and when to stop. Sara, whose baby Elly had been from birth, had a kind of self- confidence stemming from this special relationship. She was also the eldest, a poised, omnicompetent child. It was easier for her to take the initiative than for the less assertive Rebecca, or for Matthew, who was not so far out of babyhood himself. Sara could get Elly to look at her. She was a good tickler, a good picker-upper. The younger children found it harder to press in where they were not wanted. So Elly noticed Sara more than she noticed them. But she did not notice any of them much. To take the initiative and be rebuffed is terribly painful
. In differing degrees all shared that pain.
But children get used to being ignored — they have plenty of other things on their minds besides whether their baby sister is interested in them. If Elly gave nothing, she demanded nothing. She did not occupy a very important position in their lives. It seemed to us that for the time being this was as it should be. If she ignored them, they could ignore her too. Our task at this point was to see that the few ways in which she impinged on them should be, if not actually pleasant, at least neutral. Later they would have to learn to accept the inconvenience and embarrassment that any abnormal child brings. Acceptance would grow of itself as Elly and they grew together. But we could act now to minimize inconvenience and embarrassment.
We had decided — or, rather, we had never questioned — that Elly was to live with us, to benefit, we hoped, from surroundings of warmth and love. From that choice, certain things must follow.
If love was to be her therapy, it must be possible to find her lovable. At first we might be able to do no more than ensure that she not be hatable. That would be a beginning; for the children’s sakes, our sakes, and her own, we must do what we could to make sure of that. No one can be expected to love a child whatever it does, least of all its brothers and sisters.
If Elly was to live with us, we could not allow her to be destructive, dirty, or repellent in her personal habits. The children’s possessions, and ours, must be safe. We must be able to take her to restaurants and public places. The family had enough to bear from Elly without having in addition to be ashamed of her behaviour or appearance.
It was our good luck that Elly was pretty. Or perhaps it was more than luck; physical attractiveness, like good health, is one of the inexplicable items in the syndrome of infantile autism, and this makes the family’s burden lighter. The world is unfair, and in a pretty child people will overlook a great deal. We kept Elly’s yellow hair washed and brushed (against considerable opposition), her nose and mouth wiped, her fingers unsticky. We saw to it that her clothes were attractive. When she spilled food down the front (less often, as I have said, than normal children) we sponged or changed her dress. There was no danger of conveying an exaggerated fastidiousness to Elly. She was fastidious already. Perhaps it would have been more ‘natural’ or ‘healthy’ if she had been relaxed enough to like being dirty, but she did not. It might be a sign of her pathology, but since it made things easier we might as well be glad of it.
Behaviour, however, was harder to control. Yet some sort of control was a necessity.
It is not easy to discipline an abnormal child. The difficulty lies not so much in the child itself as in one’s own reluctance to be harsh with the handicapped. It is not easy to punish a child who does not hear what you say for a transgression whose nature you have no reason to believe she can understand. You cannot say that Sara will be sad if Elly tears her book (Elly was six before she began to understand what ‘sad’ meant). You cannot even say that if Elly tears books Mama will have to take the books away. You cannot say that if Elly pours her bathwater on the floor it will soak down and leak through the ceiling below. You cannot say anything, because the child understands only action, and not much of that. She understands only what touches her presently, physically. She sets no store by things, so you cannot discipline her by deprivation or by reward. What remains is the traditional method of discipline — the use of force.
I need not explain to modern readers that for our generation of parents force was not the method of choice. To impose one’s will on a normal child by force is distasteful enough (though at times, as our generation of parents at length found out, quick force is less damaging to all concerned than indulgence or elaborate moral suasion). To use force on an abnormal child seems too brutal to contemplate. I do not know whether I could have contemplated it, and I’m not sure I could have done it. By good luck I did not have to. It happened that the major work of disciplining Elly was done before we knew there was anything the matter.
Until she was twenty-two months old, after all, we thought Elly a normal, though increasingly obtuse and stubborn child. She responded to no prohibitions or commands; when she was doing something anti-social it was almost impossible to get her to stop. She simply paid no attention to what we did or said. Amused at first, I would become irritated, then infuriated at behaviour which looked in every way like wilful disobedience. Why would she go on drenching the floor with bathwater when again and again I asked her not to? The other children hadn’t been like that, even when they were smaller. Why wouldn’t this one listen to her mother?
I grew more angry than I have ever been with a child — so angry that I cannot recall it without shame. In my anger, I slapped my little girl’s naked flesh again and again, until I could see the redness on her skin and she was screaming with pain and shock. I screamed myself. ‘No, no, no, NO!’ I don’t know how often I did this — three or four occasions, perhaps, no more. Then it was no longer necessary. Elly understood nothing else, but she understood ‘no, no’. I rarely had even to slap her hand, never to hit her hard. I did not have to scream. The words were enough.
And of course almost as soon as she understood the words, I came to understand that she might not have been able to help the behaviour for which I had punished her. Everything was different after she came home from the hospital. It was years before I could get really angry with her again. Of course I felt guilt for those rages that only Elly and I had witnessed. (I would have been ashamed for the older children to see me behave so. ) It was a bitter thing for me to reflect that in two years the only verbal contact I had achieved with my baby was the word ‘no’. I am a verbal person; for me, words have tremendous significance. It seemed to me that that no might impose its minus sign upon a whole universe.
I was wrong. That guilt was unnecessary and after a time I ceased to feel it. It was not only a matter of realizing that it was better for Elly herself that she now responded reliably to ‘no, no’. I had known that to begin with. I had to go further, to realize that in a child so out of touch with others, any contact is better than no contact at all. Would that I could have reached Elly first with ‘I love you’, or with ‘yes’ (though to be realistic one should remember that the nature of the world is such that ‘no’ is an essential word and ‘yes’ is not, and that most children learn it first). The important thing was that I reached her. Perhaps nothing less than that storm of force and emotion was necessary to break through the wall. If so, I am glad it came when it did; six months later it would have been impossible for me to feel that anger.
I should have had to fake it, then. I am convinced of that. And that would have been exceedingly difficult, though much less is impossible than one at first believes. [3] Violent anger is better felt than faked. But it is necessary, if it is the only way of conveying to a child that there are limits to what it can do and that someone cares enough to set them. I am no longer sorry that I used force against Elly. Those who know the story of Annie Sullivan know that she had to use more force than I before she could work her miracle and reach the waiting child inside the lonely little wild animal that was Helen Keller. And the little animal, through force as well as love, in some sense knew that this was the first person who cared enough about their relationship to find a way to make it work.
I found that Elly wanted discipline. When she tore a book or pencilled a wall I began to notice that if I overlooked the transgression she would take my hand and use it to slap her own. As she approached three she made a game of it (I need not reemphasize how unusual it was for Elly to invent any kind of game). With no provocation at all she would herself say ‘no, no’, take my hand, make me slap hers, and laugh her head off. This was in contrast to the infrequent occasions when I really slapped her for a real transgression; she did not laugh then, even though it was usually, now, no more than a symbolic tap. The punishment game made me feel better about the real punishments. I came to see that discipline, too, is a kind of communication. Negative though it is, it sets up a rel
ationship of mutual expectation. I was trying to find reciprocal games; Elly showed me that this was one. If you do this, then I do that. A normal child needs this assurance of order and predictability, but it can survive without it. For an abnormal child whose abnormality lies in lack of contact, it is more important.
For a child suffering from the specific autistic syndrome it is essential. All observers of such children have been struck by their extraordinary investment in order, their urge to set objects in arbitrary but exact and recurrent arrangements, their capacity to note and be disturbed by the most minor displacements. An autistic child may carry on inconsolably if its milk is offered before rather than after its dessert, or if a missing block makes completion of a design impossible. It was this interest in order that suggested autism to Dr Blank when he first saw Elly. Such children, then, might be expected to have a more than usual need for an orderly social environment. What will distress them and fill them with anxiety is not the arbitrariness or unfairness of a punishment. For them, since they have no comprehension of social causes, all events are equally arbitrary and fairness has no meaning. What is difficult to bear is, rather, inconsistency, deviation from that expected pattern of events which is their only surety in an incomprehensible world. A normal child can take it if behaviour that yesterday brought punishment today gets off scot-free; it may sense the reason and will very probably enjoy the fact. An autistic child will not; it will suffer, wordlessly, in the same way it suffers when something is out of place. We are told to be consistent with all our children, and we try to be. But laziness or inattention often intervene or special circumstances arise and the expected consequences do not follow. The autistic child cannot appreciate the circumstances or its goodluck, and shows its anxiety by an uncharacteristic turbulence. Many parents who have lived through Dr Spock’s great revolution in child care have seen the results of dogmatic permissiveness and have come to feel, as Dr Spock himself has, that to indulge a child is to do it no special favour. [4] Normal children, however, can survive permissiveness, as they can survive most things. For an autistic child, the indulgence, hesitation, and softness that are so naturally called forth by its condition must be avoided at whatever cost. They will not help the child or its family, but do serious injury to them both.
The Siege Page 11
