It is not uncommon for autistic children to be diagnosed initially as deaf. Surrounded by mystery, one is always trying out hypotheses. Retardation? The child seems sharp when it wants to be. Deafness would explain almost everything — Elly’s failure of speech, her failure of comprehension, even her withdrawal, which would be natural if she lived in a silent world. She not only did not respond to speech; more often than not, she did not respond to sound either. I remember her sitting on the law none day, her back to the driveway. An astonishing thing was happening; one would think any small child would notice it. Our neighbours had a chimney fire. Up our small court came a genuine red fire engine, making the usual amount of fire-engine noise. I remember that Elly did not even look up. So cautious in everything involving direct bodily danger, for years she paid no attention to the sound of the car motors which could bring her the greatest danger of all. The signals came from outside herself, they did not impinge directly on her body, so she ignored them as if they did not exist.
Yet, like all the other hypotheses, deafness did not seem to fit all the facts. For those few signals that she had invested with significance, her hearing could be preternaturally acute. For some reason she disliked the dishwasher; if it was in operation she would not even remain on the same floor. Naturally we avoided turning it on in her presence, but that was not enough. Elly could hear the sound of the switch through a closed door. A little click, and she would already be on her way upstairs.
Once — Elly was not yet three — as we all sat at table, talking, eating, a dog barked outside. No one registered it, of course; the general noise level was high. Five minutes later, when our quiet Elly suddenly barked, we remembered it in our laughter.
But things like that did not happen often. Written down, they take on significance we dared not give them as we lived through a tangle of events, many of which pointed in the opposite direction. As we looked for evidence that Elly could hear, far more significant than such rare occurrences was the fact that Elly did, on occasion, speak. Now and then — sometimes three or four times in a day — Elly did say a word. The words indicated her imperviousness was not absolute. They had to come from somewhere. Deaf children have no way of acquiring words.
We had not even had to wait particularly long for Elly’s first word. She had said ‘teddy’ at fourteen months, as normal as you please. A month or so and she said ‘mama’. The next month, ‘dada’. Another month, another word. It takes sometime to realize that the new word is not added to the old words but substituted for them; that at any given time she has a one-word vocabulary. It takes time, too, to realize how strange it is that though she may say ‘teddy’, and right in her bear's presence so you know it is no accident, she shows no sign of comprehension if you say ‘teddy’ to her. A normal child’s passive or recognition vocabulary is larger — even much larger — than the vocabulary it can itself make use of. One is unprepared for the phenomenon of a child whose active vocabulary is pitifully small, but whose passive vocabulary is smaller still.
Elly was twenty-two months old, fresh from her first hospital examination, when I began to keep the record of her speech which forms the basis of this chapter. My rule was to enter a word only after Elly had used it at least three times in a convincing context; the single exception I made was for that strange, unmistakable, one-shot ‘scissors’. It was not hard to be accurate, there was so little to record. By the time she was two years old, Elly had spoken six different words — those mentioned above, ‘walk-walk’, ‘no-no’, and her own name. Of these, however, she gave signs of understanding only two. She would turn in response to ‘Elly’, and she would stop what she was doing if you said ‘no-no’. She intermittently responded to ‘come’, though she did not say it. That was all. A six-month puppy can do as much.
Not that she was silent. The house was full of her cheerful sounds, the musical ba-bas and ah-ah-ahs of a normal baby. Lying in bed in the leisurely mornings the summer she was two, I listened to her pronounce her name. ‘El-ly,’ she said, ‘El-ly’ – Iaughing, chuckling, over and over again. The sounds, even the consonants, were exquisitely clear. I’m glad I got the chance to hear her. For a month or so she said it. Then she ceased completely. It was two years at least until she spoke her name again. When she did, it was so indistinct as to be virtually unintelligible. Even today she does not say it as clearly as she did those summer mornings six years ago.
There was another peculiarity of her language that went far beyond its sparseness. Elly spoke words, though not often. But she did not use them to communicate. She had no idea of language as a tool that could cause things to happen. By the time she was two and a half, there were several more words to add to the record. A few were simple nouns like ‘book’, ‘pin’, and ‘milk’. Others were sounds referring to activities, like the ‘there she is!’ intonation with which she responded to the peekaboo game in which I had finally succeeded in interesting her. But not one of these words was ever used, as distinguished from merely spoken. If Elly saw me, she might or might not say ‘mama’. She would never use the name to call me. She might possibly say ‘teddy’ if he appeared. She would never ask for him by name.
This was of course related to the fact that there was so little she wanted to ask for. If it’s all one to you whether mama comes or not, you aren’t likely to call her. If you don’t want teddy enough to reach for him with your own hand, you will hardly ask for him with a word. But even when she did begin to acknowledge desires — she was reaching two and a half — she did not communicate them by speech. She had other methods. If the object was near, she would take your hand and use it as a tool. If it was more remote, she would push or lead you to it. There were some foods she liked better than others, but she was no more likely to learn the words for them than for objects that had no interest for her. In fact, though food was one of the few things she might want, she had no word for any food but milk, which she had no particular desire for. Language, for Elly, was so nonfunctional that I often felt that what was inexplicable was not why she didn’t have more words but why she had as many as she did.
For where could these words have come from? If you said words, she did not appear to hear them. She never repeated any sound after you said it — the easiest way of acquiring new words. If you said one of her own words to her, she did not understand it. Yet if she had not at some time heard it with understanding, she would not have acquired it at all. Each of Elly’s words started in the public domain. Yet it was as if as soon as she acquired it, it became her own and nobody else’s.
Words are channels of communication, but Elly’s words were things-in-themselves that led to nowhere and nobody.
So there she was. Two, two and a half, three. Every couple of months she’d say a word she’d never said before. By the time she was three my list was up to twenty. But of those twenty in the entire month before her third birthday she spoke only five. Most of them were out of use for months at a time and several, like the clear and frequent ‘Elly’, had been abandoned altogether.
Where did they go? Some simply disappeared. Elly learned ‘milk’ and ‘pin’ at two and lost them by two and a half. She was five before she said them again and when she did they seemed entirely fresh acquisitions. Some seemed rather to go underground. ‘Ball’ had a strange and suggestive history. Acquired around two, the word went into almost immediate retirement. It emerged once, six months later. Two months after that she said it three times in a single week. Another six months and she said it again. It was never triggered by our familiar household balls. Elly said it once when she saw a small, entirely deflated white rubber football — an object it took real perspicuity for a two-year-old to identify as a ball at all. (Ten minutes later shown an ordinary ball, she said nothing. ) She said it once when I tossed a perforated plastic golf-ball into her bath. The word existed deep inside, apparently. But only an unusual stimulus could call it out.
Other children’s vocabularies build and proliferate, like their bodily skills. They add o
ne word to another, then begin to combine them. Elly did not. For years every expansion of her vocabulary was matched by a contraction. Most often the old word would simply be gone. But sometimes it was possible actually to observe the process. I was present when Elly acquired the word ‘eye’, and I watched it degenerate and disappear.
She was three when she acquired it. Although bodily sensations were her main avenue to the world, it was her only word for a part of the body. (She was over four before she acquired another.) She learned it in what were for her unusual circumstances — not from me but from a friend, and not from a real eye, but from a large and striking stylized eye on a bathing cap. She repeated it next day in a new and correct context and kept it current for some time, saying it for approval several times a day. (By three she had progressed enough to be able to enjoy approval.) I tried to keep meaning in the word by showing eyes on dolls, pictures, and people, and Elly enjoyed this. She had an ‘eye’ game; she would take off my glasses, say ‘eye’, and laugh. I could even ask ‘Where’s doggy’s eye?’ and get an answer, though previously all ‘where’ questions had been answered like ‘Where’s your belly button?’ — by a delighted revelation of that intrinsically comic spot. But repetition has its dangers, as I had already seen in Elly’s block play. Within a month the word was already losing meaning; it was becoming an approval-winning trick. Two months later it was entirely out of use and Elly showed no signs of comprehending it when spoken.
At three years and ten months, a year after Dr Blank had first seen her, I reported to him, ‘words still come and go; no real change from a year ago. About 5–6 in use in any one week.’ For her fourth birthday I made a complete vocabulary review, checking over my records of every word I had ever heard her speak, the date of its acquisition, and the frequency of its use. The total was 31. This is the summary I made then.
Of the 31 words she has used in context in her four years of life it would not cause me surprise if she today spoke any one of 12 or 13. Others would be cause for a special entry here. Among these would be #27,28, and 29 in order of acquisition, so recent use does not save from oblivion.
In her own speech, then, Elly, in four years, had made hardly any progress. The vocabulary pool she drew from was larger, but she used no more words, no more often, than she had a year before. About comprehension, however, we could be a little more cheerful. Elly regularly said words and abandoned them, but once she began to understand something we said to her she tended to hold on to it. There was a slow but steady increase in what she understood and would respond to. At two she would turn when we said ‘Elly’ and crawl when we said ‘come’. By two and a quarter she seemed to know the meaning of ‘Let’s walk-walk up’ — or ‘down’. At two and a half she responded correctly to ‘give me the [pins/book/brush]’. But in all these cases it seemed likely that, while appearing to respond to words, she was in fact responding to something else — to the nonverbal cues afforded by the situation. When I said ‘come’ I held out my arms. My hand outstretched accompanied ‘give me’. It was not until she was three years and two months old that I could record in my notebook: ‘Response to “come”, “let’s go walk- walk, ‘climb up in your chair” now perfectly sure even if I am out of sight while speaking (i.e. it is not a situational cue).’ By the time six more months had passed I could add ‘Shut the door,’ ‘Come get your diapers,’ ‘Let’s go outside,’ and ‘Let’s go riding in the car.’ The expansion continued; two months later I could report to Dr Blank that
she understands a perceptibly greater range of commands and suggestions of the ‘put your foot in’, ‘climb up in your chair’ variety. These are all quite long; she seems to respond to them as complete tone patterns rather than separate words. She will, for example, respond to ‘Come on, let’s go upstairs and have your bath,’ but shows no comprehension of much easier sentences made with words within her current vocabulary like, say, ‘Butter, Elly?’ These words she understands only when she says them.
What she understood was in fact a limited range of routine expected commands. I tried once — not then, but six months later — to make a game where the commands required a flexible response: ‘Put the bean in my pocket,’ ‘Put the marble in my hand.’ It was too soon. I got no comprehension at all.
Yet there was progress. We allowed ourselves a little encouragement. Comprehension — even routine comprehension — seemed to us, at this point, infinitely more significant- than actual speech, since comprehension was the strongest sign that Elly could give that she was in contact with other human beings. It is possible to speak without contact; the very word ‘autistic’ points to this, and speech can be autistic. But comprehension is contact itself. For the time being we could be comfortable with the slow increase in what Elly seemed to hear — if the word ‘comfortable’ could ever fit our underwater existence. For speech itself, we would have to wait.
And all this time, what were we doing? Not very much, in fact. Such techniques as we evolved were hardly worthy of the name. But few and obvious as they were, they were all that Elly was ready for, which was lucky for us. We too needed time to learn how to help Elly give meaning to sound.
Again and always, it helped that we had other children. More often, parents of autistic children are less lucky; the disorder seems, like many others, to pick out the first-born. But we had watched three different children learn to talk in their three differing ways, and we had learned how to talk to little children. Little normal children, that is — obviously it could not be the same for Elly, who heard almost nothing that we said. But it could not be so very different either — after all, the range of what one can reasonably say to very small children is not great. With Elly the range was all downward towards zero. Yet it was plain that it must never reach there. We must not chatter to Elly, for a constant background of noise is more easily ignored than single, occasional sounds — and to Elly, all speech was noise. But whether or not she seemed to hear us, we must talk.
We tried to talk simply and directly, waiting, if possible, until Elly was already looking in our direction. We spoke as clearly as we could. We avoided long sentences. We used her own vocabulary as far as possible, little as she appeared to comprehend it. We tried not to use more than one term for the same thing. We were faithful in naming objects that Elly used or played with or merely focused on, at the moment of focus, although months turned into years and she acquired only a pathetic fraction of the hundreds we named. Deliberately, we introduced our games and activities by words; in fact, at four, the bulk of her thirty-one-word ‘vocabulary’ consisted not of simple object-words, but stock responses to familiar activities, like the noise she made for ‘there she is’ in peekaboo, or the ‘whee’ as she went down the slide. We experimented with varying loudness and softness - a loud sound, close by, was something more likely to attract her attention, and besides, there lingered in our minds some apprehension of deafness, partial if not complete. Later on, when she began to lower her defences, we were to find she could respond to a whisper, but in the early years we were careful to keep our speech direct and clearly audible,
But what is ‘really’? ‘You have to admit,’ I said, ‘that if she can do things like that, it's striking that she doesn’t understand anything you say.’ And of course she had shown no signs she knew Joann was in the room. She heard me rarely enough; she almost never seemed to hear a stranger.
But Joann was no ordinary stranger. She knew things I did not - the techniques she had had to find to break through to her sluggish, defective little son, who was apparently so different from our deft Elly. Joann was highly coloured, gay, vivid, aggressive, larger than life. She shouted at Elly — not words, but nonsense syllables: Ba-ba! La-la! And Elly heard her. Instead of shrinking, as perhaps should have been expected, she looked at her and laughed. Months after, she was still saying ‘La-la!’
But speech is not the only kind of meaningful sound. There is also music. One of the best arguments against genuine deafness in Elly was that early on s
he had shown signs that she could hear music. The ninth entry on her vocabulary list (age two) was a word only by courtesy. It was a sound, and it had a consistent referent, but it was in fact ah imitation of music. When I sat down at the piano, Elly would say ‘daddle-addle-addle’ and move my hand to C #. It was by that that I understood her; I would not otherwise have caught on to the idea that ‘daddle-addle-addle’ represented the two repeated notes in the left-hand part of Mozart’s C-major Sonata, the almost-trill that provides the background when the second theme comes in. But as so often with Elly, nothing came of this early response. She abandoned the word and lost interest in the music, to which she had in any case been attracted not by the pretty theme but by the repetitive notes. Nor did she take an interest in anything else I played. It was not until the summer she was three, a full year later, that I noticed any response to music again.
As with Joann’s syllables, this was something she did not learn from me. Though I sang to her regularly, and though some of her own sounds were not unmusical, she had never herself sung any tune I could recognize. But on a visit to friends-it lasted a week and was a distinct break in Elly’s usual routine — their teenage daughter sang to Elly ‘Row, row, row your boat.’ She made of it a rocking, pushing game that pleased Elly, who continued to sing it for a few weeks after her return home. She sang it all the way through — we could even recognize the word ‘row’. Then it joined Mozart in limbo. We still sang it, of course, and rocked and played the game, but as far as Elly was concerned it was gone.
We got a folk-song record that fall, simple, direct songs a child would enjoy, and Elly seemed to like it well enough. We played it often; it had about twelve songs on it. That January, when she was three and a half, I thought — I was almost sure — I heard her singing one of them, a Scottish folk song, ‘Three Craws Sat Upon a Wall.’ To reinforce and encourage, I began softly to sing along with her. I should have known better; I knew well enough from other experience how important it was not to seem to notice when Elly made a step forward. Elly stopped at once as I began to sing.
The Siege Page 8
