The Siege
Clara Clairborne Park
Elly Park was a beautiful, golden-haired little girl who moved with unusual grape. As a baby she had been undemanding, and later she appeared totally absorbed in her own world. When she was three her parents learned that she was autistic.
In The Siege Elly’s mother describes how she, her husband and their three normal children set out to break down the barriers of Elly’s childhood psychosis. From the agonizing realization that 'something was wrong' with her child, through the heartbreaking consultations with doctors and psychiatrists, to the imaginative ploys the family devised to get through to Elly, Clara Park tells her story simply and with remarkable objectivity.
A document of courage and determination,The Siege stands as a timely reminder of what can be accomplished by parental love and understanding.
Clara Park
The Siege
To those behind walls,
and to all their besiegers
"The Siege is the story of how a devoted mother, refusing to be discouraged, has accomplished miracles in fostering the intellectual, social, and emotional development of her autistic daughter".
Benjamin Spock, M. D.
"The Siege has much to tell us about how different we are from one another and how alike; about the limits of teaching and the possibilities of a family’s love".
Brina Caplan, The Nation
"Beautiful and intelligent One of the first personal accounts of autism,and still the best".
Oliver Sacks in An Anthropologist on Mars
1. The Changeling
We start with an image — a tiny, golden child on hands and knees, circling round and round a spot on the floor in mysterious self-absorbed delight. She does not look up, though she is smiling and laughing; she does not call our attention to the mysterious object of her pleasure. She does not see us at all. She and the spot are all there is, and though she is eighteen months old, an age for touching, tasting, pointing, pushing, exploring, she is doing none of these. She does not walk, or crawl upstairs, or pull herself to her feet to reach for objects. She doesn’t want any objects. Instead, she circles her spot. Or she sits, a long chain in her hand, snaking it up and down, up and down, watching it coil and uncoil, for twenty minutes, half an hour — until someone comes, moves her or feeds her or gives her another toy, or perhaps a book.
We are a bookish family. She too likes books. Rapidly, expertly, decisively, she flips the pages, one by one by one. Bright pictures or text are the same to her; one could not say she doesn’t see them, or that she does. Rapidly, with uninterrupted rhythm, the pages turn.
One speaks to her, loudly or softly. There is no response. She is deaf, perhaps. That would explain a lot of things — her total inattention to simple commands and requests, which we thought stubbornness; the fact that as month follows month she speaks no more than one word or two, and these only once or twice in a week; even, perhaps, her self-absorption. But we do not really think she is deaf. She turns, when you least expect it, at a sudden noise. The soft whirr as the water enters the washing machine makes her wheel round. And there are the words. If she were deaf there would be no words. But out of nowhere they appear. And into nowhere they disappear; each new word displaces its predecessor. At any given time she has a word, not a vocabulary.
Twenty-two months. Still not walking, talking, or responding to speech. The doctor is worried, she is observed for three days in the hospital. There they find no evidence of phenylketonuria, or any other physical deficiencies. (From babyhood she had been unusually healthy; her temperature had never even risen high enough to tempt me to take it. ) The doctors watched her, remote and withdrawn in her hospital crib. She would not let the nurses feed her. They smiled at her; she looked through them. The doctors spoke; she heard nothing. They whistled; she turned round. Her movements were quick, decisive; her expression, alert. They told us she was still within the curve of normal development, although at the very bottom; we should wait six months and then begin to worry. ‘She seems like a child who has been raised very much alone.’
Alone? In a house with three older brothers and sisters, neighbours’ children constantly in and out? She was alone, but she created her aloneness, sought it, guarded it. When we put her on the floor to watch the children play, she grizzled and fretted. Crawling in the garden, alone in her crib, she was happy. I would put her in for a nap after lunch. At five she would still be content there — sleeping, bouncing, laughing, rocking, back and forth, back and forth. I began to realize that I could put her there with a supply of food and drink and she would never be ready to come out. She sought enclosed spaces; every time she saw a playpen, she tried to get in. If there was no physical fence between her and the world, she erected one. She looked through human beings as if they were glass. She created solitude in the midst of company, silence in the midst of chatter.
Another image; she is at the beach, two years old now, walking easily (when she was ready, she simply began; there was no physical difficulty, there never had been any). A bronzed, gold baby of unusual beauty, she walks along the sand. Many people are looking at her because she is so pretty, but she is looking at no one. On she walks, into family groups, by picnic baskets, sand castles, and buckets. She grazes human beings by a quarter of an inch. You would think she did not see them. But she does see them, because no matter how close she comes, her eyes fixed, it seems, on some point beyond them or to one side, she never touches them. On she goes. The beach is lonelier down this way. The blank sand stretches into the distance. Her silhouette, small to start with, grows smaller and smaller. When I can hardly see her, I begin to run. She might have walked straight ahead, delicately swerving to avoid an occasional collision, without a backward look, for ever, so little did she need of human contact.
Once a friend, seeing for the first time her pale skin and straight yellow hair, her clear blue eyes and the dancing grace of her body, called her a fairy child. And there was a fairy lightness in her movements, a fairy purity in her detached gaze. As time passed and she grew taller, leaner, older, her face seemed not to record time’s passage. She carried none of the stigmata of the defective; nothing distinguished her from other children except that in some undefinable way she looked younger. The Irish name for fairyland is the Land of Youth. There live the Good People, who bear the human shape without the burden of the human heart. There is no malice in the Good People; they do not will the pain they cause to others. If they seem cruel, it is not real cruelty — only a certain remoteness, an inability to comprehend our desires, our needs, and our warmth. It is because the fairies have no hearts that they do not grow old. Elly’s eerie imperviousness, her serene self-sufficiency, belonged to those who, like the fairies, can live somehow untouched by the human experience.
Young children are a complex of needs and desires. They find themselves fed, clothed, kept clean, but that is only the barest beginning of what they want. They want sister’s cookie, they want the toy that’s out of reach, they want a ride in the wagon. ‘Mommy — I need — I want — Give me .’ things, attention, love. It is hard to remember the first stirrings of doubt about a baby, but I remember a day when I took Elly to the supermarket. She was nineteen months old. She sat in the shopping cart, alert and intent, her eyes taking in the objects on the shelves as she rolled along. We passed a friend with her little girl, just Elly’s age. I looked at the child carefully. My friend had had a difficult delivery. Transfusions had been necessary, the baby had lacked oxygen. There had been some anxiety that the brain had been affected. The little girl looked fine, however; sitting up in her cart, she had Elly’s alertness but not her gravity. She turned, she looked up at her mother. As I watched, I saw her point to a box of candy.
I thought then
that I had never seen Elly point.
To point is so simple, so spontaneous, so primary an action that it seems ridiculous to analyse it. All babies point, do they not? To stretch out the arm and the finger is symbolically and literally, to stretch out the self into the world — in order to remark on an object, to call it to another’s attention, perhaps to want it for oneself. From pointing comes the question ‘What’s that?’ that unlocks the varied world. To point, to reach, to stretch, to grab, is to make a relation between oneself and the outside. To need is to relate.
My neighbour’s little boy is almost three and very slow to talk-they are worried about him. He wanders over to me, looks up at my face, points to the swing. The noise he makes is totally unintelligible, but I understand it: ‘I want.’ I put him on the swing. Not to worry; he'll come out of it. Elly is eight years old now. I have still never seen her point. She has a vocabulary of hundreds of words. But although it includes ‘rectangle’, ‘square’, and ‘hexagon’, it does not include ‘What’s that?’
Children vary in the intensity of their desires, and the aggressiveness with which they express them. Some babies are reasonably self-sufficient from birth — ‘good’ babies, active and contented in their playpens, cheerful among their toys. Others are demanding and dependent. These we try to reassure, to lead gently towards self-sufficiency. We think of self-sufficiency, as a virtue, even among babies — as a forerunner of independence, of inner resource.
It is some time before it occurs to a busy mother, with three other children, that a baby can be too self-sufficient.
Elly did not point. Nor did she try to get objects that were not within her reach; she seemed unconscious they were there. Content in crib or pen, when removed from them she crawled freely from room to room. But it was motion, not exploration. She did not push or poke, open drawers, pull at lamps or tables. At twelve months, when she began to crawl, I got ready the gates that we had used to keep the other three children from falling downstairs. I never used them. Elly did not try to go down, and there was never a question of her falling. Unconscious of so much, she was conscious of the location of every edge or limit; she could be left safely on any bed. She accepted limits, with an acceptance so natural it seems clear that it was a welcome. She made no move to climb the stairs, but one day, in play, her sister taught her to crawl up. She learned easily enough, and I thought the new skill would mean the usual extension of a baby’s possibilities. She learned on a Friday. We went away that weekend to a stairless household, and when we came back the Sunday it did not occur to us to review her new skill. It was six months before she crawled upstairs again.
She had eaten at the table with us ever since she was old enough to sit upright. We put food on her plate, as for any baby; she picked it up in her fingers and ate it, or allowed me to feed it to her, or refused it; she did not see or ask for anything anyone else was eating. She asked for nothing, reached for nothing. She was content. Not impassive — she smiled, even laughed-but content.
Only now and then something went wrong, something trivial in everything but its effect on Elly. Her milk was served in a glass, perhaps, instead of her silver cup, or it was offered her after the meal instead of before. It was difficult to guess what was wrong, since she gave us no clue, but it was important to find out, for she would cry violently until we managed to get things right again, crying that seemed all the more remarkable in contrast with her usual serenity.
We had not thought of retardation, but after the hospital examination we thought of it constantly as we waited for the six months to pass. If a two-year-old is late walking, does not talk or understand, plays repetitively or not at all, what should she be but retarded? We thought and the doctors thought we saw alertness, but a child’s look of intelligence is an intangible, a construct of the imagination. What is tangible, what is operational, is what a child does, and from one day’s end to another, this child did almost nothing. Why should her look of self absorption be interpreted as focused or intent simply because it seemed so to us? Was not the simple truth that what we were seeing, in our inexperience, was the misted stare of the retardate, that her withdrawal was in fact the natural motion of the defective faced with a world he is powerless to comprehend? In an adolescent — even an older child — we are sickeningly familiar with the discrepancies between what a person can do and what he does in fact. But in a baby? Elly had been something over a year old when her progress had begun to slow. Nothing had happened to her — no illness, no absence, no change in the environment. At that age, surely, the organism should be spontaneous. What it can, it does. If Elly did not do things, the presumption must surely be that she could not.
Yet however we schooled ourselves to accept this hypothesis, we could not make it fit. I did not know much about the retarded, but I imagined they would try to do things, and fail. Elly didn’t try, but the few things she had learned to do she had done neatly and successfully the first time she got around to it. She was never sloppy, never hesitant. I pictured the movements of the retarded as fuzzy, clumsy, and uncertain. Elly’s touch was firm, her motions deliberate, eerily controlled. She did not stumble, did not fall, did not spill or drop things. How beautifully her chain moved up and down! Yet how reluctant she was to use her small, efficient fingers! As time went on, though she still needed little in comparison to an ordinary child, she began to acknowledge some rudimentary desires. She wanted something after all — a piece of cake, perhaps, as we sat at table. She did not ask for it verbally, of course, or by any sound, whether grunt or cry. But neither did she reach for it herself. Instead, she firmly picked up the human arm that happened to be nearest her and threw it towards the object desired. She used that other arm and hand as her tool — as if the human being it belonged to did not exist.
It was not possible to give her a meaningful intelligence test. She would have looked through any tester to the wall behind him. Every test assumes communication; without it, there would be no way of making her comprehend what she was expected to do — indeed the very idea that one human being could have expectations of another was foreign to her. We could not test her — but I could watch her. A friend, a trained psychologist, mentioned that a two-year-old should be able to build a four-block tower. Elly had blocks. Occasionally she used one to tap repetitively, on the pages of a book as she flipped them past. That was all.
One day, sitting on the floor beside her, I built a four-block tower. Neatly, block by block, she dismantled it — no free-sweeping destructiveness for her. I picked up her hand, used it as my tool to build the next tower. Then easily, neatly, she built the third. It was the same with pegs in holes, rings on a stick. Always the passivity, the apparent incapacity — yet when the initiative came from outside, she could grasp both principle and technique at once.
In those years, only once or twice did I ever know Elly to imitate as other children do — spontaneously repeating a word or an action after someone else. Elly did so little that anyone else did. And such words as she had, such actions as she performed,originated not in a social context, but seemingly out of nowhere. In search of contact, I did what she would not; if she would not or could not do what I did, I would do what she did. So with paper and pencil I lay low beside her — she crayoning on her paper with random scribbles, I doing the same. For a normal adult, scribbling soon palls; after a while I made circles, as well as a face or two and a couple of fish. Elly paid no attention and went on scribbling.
The next day, however, she did not scribble. She made her st closed figures. Three days after I had made a cross, she made one. Surely it took more intelligence to copy a figure from memory at a remove of three days than to imitate it immediately afterwards as a normal child would do? What credit would she get on an intelligence test for this?
But these were lights that flickered and went out. Like Elly’s words, they did not build into usable skills. Elly made block towers for a few months. More surprisingly, she spontaneously evolved her own block play, arranging eighty or one h
undred blocks in perfect parallel rows. She did this over and over again, as she had played with her chain. Again and again we saw it happen; the new accomplishment, instead of leading to more complex activity, became as sterile and repetitive as the old and was finally abandoned. After three weeks, she drew no more circles. After six months, she made no more block towers. So complete was her abandonment that I could hardly believe I had ever seen her do these things. Two years later, when for a year she had not touched crayon to paper, I looked at her sheaves of circles with helpless wonder.
And there were the things she did not repeat, but did once and once only. The day she came home from the hospital she saw a pair of scissors lying on the playroom floor, and suddenly, spontaneously, pronounced that difficult word with exemplary clarity. She repeated it, less clearly. She never said it again. One day she took the dustpan and brush and brushed the floor, just like any little girl who wants to be like her mother. One day she fed some cereal to a doll — once, and once only. Actions are past in a moment and time runs over them. One distrusts the senses, one distrusts memory. Had I seen these things? Had she done them at all?
How much did she take in of the world around her? Almost nothing, it appeared. Yet one day, several months before her third birthday, as we lay and scribbled, a pencil point broke. Elly got up in a businesslike manner, put the pencil into my hand, and propelled me towards the door. I hung back; I could not believe she knew where she was going. I wanted to test her. She pushed me through two rooms and into a third, straight to the pencil sharpener. I had not known she knew there was a pencil sharpener, let alone its location and its purpose. If she knew this, how much else did she know?
The doctor saw her again — the same intelligent G P who had delivered her, who had spotted her abnormality, who had supervised her first tests. Watching her precise and accurate lineup of the pegs in the holes of one of his office toys he could not, he said, think she was retarded. It could — he paused. It could be something else. If it were psychological — that he knew nothing about.
The Siege Page 1
