But my helpful meddling had delayed her singing, not destroyed it. After six weeks she sang it again all through, I not being so foolish a second time. A new readiness was on its way. By March of that year she was singing five distinct songs, including one tune she had invented, and she had reactivated ‘Row, row.’ She sang them well. Even her first ‘Row, row’ six months before had been as good as the best of her siblings at her age; now, as she sang more freely, her intervals grew exact, her rhythm perfect. And as a year earlier she had begun to acknowledge the simple desire for food, now she found a way to acknowledge a more subtle one. Not by speaking, of course, or by singing herself — instead she would put a gentle hand on my lips to indicate she wanted me to sing. Which was progress as thrilling as the song itself.
We had kept in touch with Dr Blank. That spring he suggested we get Elly a record-player, a 45-r.p.m. with a thick spindle a small child could handle easily. Of course that was not necessary: the first day we got the machine, a conventional one, Elly changed the records alone and meticulously returned each record to its proper album, keeping track of them, I suppose, by the colours of the labels and the configurations of printing they bore. I had intended to wait until next day to show her how to switch the machine off and on. After all, Elly had mastered the light-switch only recently, and one could not expect her to learn much at a time. But while I was still downstairs I heard the record-player going up in Elly’s room and found she had needed no teaching. As often, it seemed a question of values - what thought important, she was able to learn as fast as any normal child.
That year, music was important. In part her experience of it was discouraging; it had that same obsessive character that we had observed take over all her new skills. She played The Threepenny Opera every day for two solid months; I was thankful she had picked music that could wear well. But the obsessiveness was not everything. We soon realized that her new ability to sing was not one more repetitive and closed autistic activity. It was providing an unexpected avenue to communication.
We had laid the groundwork for this a year before, quite without knowing it. My husband and I both sing readily. We have always sung to our children. We sang to Elly — more, perhaps, because we talked less. We have always made up little songs to fit recurring situations; like many parents, we had a good-night song, and others of which we were scarcely conscious. One of these was a car song; to the simplest of tunes, we sang.
Riding in the car
Riding in the. car
Elly and her mama
Go riding in the car.
In this little verse, we could substitute for ‘mama’ the name of any member of the family who happened to be along, and we imagined that this might help Elly learn them, although she gave no sign that this hope was anything but empty. But one never knows what buildings will rise on one’s foundations. Elly was nearly five before she learned anyone’s name, but ‘Riding in the car’ was one of her first songs. Surprisingly, she sang it first not when riding in the car, but one day after I had merely spoken the words. This was the beginning of a curious and encouraging development; what we came to call Elly’s leitmotifs. We became aware that this strange child who could not take in the simplest word could absorb a tune and make it do duty for an idea.
Tunes became words for Elly. ‘Ring around a rosy’ was the first. She was three and three quarters that spring, and she had been playing the game for many months. Now her new musical alertness picked up the tune. As soon as it did, she extended it spontaneously to a picture of children in a ring, then to a garland of flowers, and finally to the unadorned figure of a circle. The song — shortened to its first few notes — for more than a year remained her word for ‘circle’ and the cluster of ideas around it, functioning far more reliably than any of her actual words.
Other leitmotifs followed. ‘Happy birthday’ equalled cake and, by extension, candles and fire. ‘Rockabye baby’ went for any rocking motion. The ascending and descending notes of the scale indicated stairs. We found we could increase our communication with her by ourselves suggesting new leitmotifs. She could pick these up easily, as she had never been able to pick up words, and she retained them. ‘London Bridge’ became a bridge motif; the dwarfs’ song from Snow White did duty for ‘dig’. We noticed that though she now sang many songs freely, she never sang her leitmotifs at random or for their own sake as songs. Nor did she sing them musically, like the others, but rapidly, schematically, functionally — only just well enough for them to do their job of communication. Music was serving as her avenue to words, for of course inside each leitmotif was a germ that was wholly verbal. She had first responded with the car tune when I had spoken, not sung, the words. The one musical motif whose verbal content seemed totally to lack connection with its characteristic situation turned out, when at last we understood it, to illustrate the verbal content of Elly’s music more strikingly than any of the others. For years we did not guess why Elly, at four, had sung ‘Alouette’ when we combed her hair after washing. It was not until she was over six, and speaking much more freely, that we discovered the connection: ‘Alouette’ equalled ‘all wet’ — words which at four she had neither said nor appeared to understand. Clearly, however, she had registered the sounds, and made through music a connection which she was unable or unwilling to make verbally.
And through music I could sometimes gain an insight into her mind that I could not as yet get through words. I transcribe one remarkable event as I recorded it in my diary at the time. It breaks the chronology a little, but not much: Elly was four and a half.
Today I heard Elly thinking. It was exactly as Wagner uses his leitmotifs; Brunnhilde is singing, and beneath her voice can be heard in the orchestra the Valhalla motif and we know she is thinking of Valhalla though she is singing of something quite different.
Elly and I were walking on the college grounds. We arrived on the bicycle and left it parked against a shed. We walked some way and started to return. As we passed a branch-off in the path that would have led back to the bicycle, I decided to prolong the walk by going a different, slightly longer way. As we passed the branch-off, Elly murmured (to herself, not me) a bar or so of ‘Riding on the bike’. She was, I feel sure, wondering about how we’d get back to the bike by this new path. I told her we’d find the bike in a minute and she continued cheerfully on, seeming to have understood. A few minutes later she asked the first question in her four and a half years: as we walked and made a turning, she said (not sang) an unformed series of sounds clearly in the rhythm of ‘Riding on the bike’, and ending in a pronounced rising intonation such as I had never heard her use. It was as if she had asked me when we would arrive at the bike. I told her again we’d soon be at the bike and she remained cheerful until we were.
Only those who have lived with a walled personality can realize the impact of such an expansion of the possibilities of communication, rudimentary as it may seem (and rudimentary as it remained, month after month). It was as if the barrier that Elly maintained against words had been lowered for music. This mattered. For what had we to work with but the faith (like many faiths, it was at first no more than a hope) that the lowering of any barrier must help with all the others?
It was little enough. Of all Elly’s inabilities, the hardest to affect was the inability to speak and comprehend. We could progress slowly towards bodily adequacy and specific skills. We could work to expand visual perception. But auditory communication was more important than these. Speech is an open gate. The personality who cannot speak is in prison, the personality who will not lives in a walled fortress. Who knows which is which, or if there is really any difference — at two, at three, at four years old?
We could work on other things, but speech was crucial. It was, in the current state of knowledge, the only indicator of the future. Kanner had written that if autistic children did not develop useful speech by the age of five the prognosis for them was very bad. We did not have to be told what ‘very bad’ was; we knew that a signif
icant proportion of Kanner’s cases had been institutionalized as functional idiots. Obviously we must not think statistically when the number of recorded cases was so few. Obviously — even more obviously — it could do no good to think in terms of deadlines. It could do harm. Yet deep in our minds, as far back as we could push it, remained the number five.
7. Willed Isolation
As I describe, I articulate. I divide into parts, I imply relationships, I put one thing first and not another. I cannot avoid doing this; I must articulate to write things down at all. I must analyse, and as I analyse I falsify. Experience as analysed is no longer experience as lived. Weakness, blindness, deafness, isolation: I have divided one thing four ways, but it is still one thing. This chapter will deal explicitly with Elly’s remoteness and the methods we devised for affecting it, but it is a new chapter, not a new subject. Elly’s inability to relate — to use the psychological jargon I have had to learn the knack of — has been implicit in all the phenomena I have described so far. If I say Elly was reluctant to use her hands, or if I say she used other people’s hands as tools without regard to their existence as human beings, I am giving two alternative descriptions, but of a reality that was not divided but single. Elly did not see, but most of what she did not see was people. She did not hear, but most of what she did not hear was people’s voices, most of what she did not under-stand was their words and their concerns. She did not speak; it would have been extraordinary if she had. A child reluctant to use even her hands as a tool is hardly likely to trouble to acquire the master tool of speech, which has its inception in an acknowledgement of other people — of need, of contact, of interdependence.
Of all Elly’s inabilities, which should be taken as primary? Should we do what seems natural and emphasize the most striking symptom, the isolation-in-self which gives the autistic condition its very name? Or do the phenomena call for deeper scrutiny? Should we posit some defect profounder than all these which would explain them all — some inability of the brain, perhaps, to decode its perceptions or render them usable? Might the new individual, faced with a world in which an unreadable welter of impressions obscures even the distinction between objects and human beings, wall itself up as a defence against the anarchy outside? Psychologists formulate the question in their own language: which is primary, disorder of affect — roughly, feeling or emotion — or dysfunction of cognition? But even for psychologists the answer is years away.
It is fortunate, then, that one needs no answer in order to go to work. Which is primary? It is an analytical question. In the living whole, nothing comes first. Work done on any one of Elly s inabilities affected the others. Every game we played, every exercise we devised to extend Elly’s use of her body, her eyes, her ears, her voice, her mind, worked in addition to breach that jealously guarded isolation which for those who lived with her remained the most obvious and the most terrible aspect of her condition.
Other children are paralysed, deaf, dumb — not in effect merely, but in very truth. But these children feel, react, relate. Whatever their disabilities, some force within them drives them outside the wall raised by their handicap to make contact with the world. If blind, they explore with their fingers, if dumb, they grab for what they want or push out some inarticulate cry. What is one to think, feel, and do when confronted by a two- year-old — one’s own — who makes no exploration or approach, who expresses neither hostility nor anger, and who wants nothing?
The autistic child is complete in itself. Its every action — or inaction — functions to keep it that way. Elly’s consciousness seemed empty, her responses simple or nonexistent, her activities rudimentary. Yet as we lived with her at that time of her most extreme withdrawal, what impressed us was not, as one might expect, the inadequacy of this child, but rather the extraordinary degree to which her environment was within her control. Having found ways to keep her world one that she could cope with, she was the most undisturbed of ‘disturbed children’.
A normal two-year-old experiences in a day more of anxiety and frustration than came to Elly in a week.
Elly’s inabilities operated to tailor the environment to her needs. If you decide, at eighteen months, to spend the rest of your life sitting in the middle of the rug, who has problems?Certainly not you. When you take the risk of getting up, walking, wanting things, attaching yourself to people, exploring the world and acting in it — in short, assuming your humanity — then you have problems. As we all have. Perhaps we are naive to be surprised at Elly. Perhaps we should rather be surprised that the normal baby creature meets this tough world with such ready welcome.
But surely we are talking metaphor, not fact. At thirteen, fifteen, eighteen months, what could Elly have decided? To speak of a baby’s decision is preposterous. Yet as we lived with our baby, month after month, it seemed as if — as if — some such decision had been made.
Much later, when we began to know enough about our own situation to look beyond it, I found the exhaustive book we had needed so long. It hadn’t been written when our trouble came upon us. The field is as new as that. Elly was six when Bernard Rimland’s Infantile Autism[1] was published; we did not come upon it for several months. We read in it with wonder of child after child who could have been Elly herself. One of them, I remember, would eat ice cream with pleasure when placed in its mouth, but would make no effort to get it. It seemed to me that this could stand as the model of autism. It is this phenomenon that any explanation of the condition must elucidate, and this that any treatment must try to change.
Those who pay homage to an ideal of total self-sufficiency have never seen the thing itself. That secret smile may be the Buddha’s, but it is monstrous seen on a baby’s face. To conquer craving is indeed to conquer pain, but humanity goes with it. That Elly wanted nothing was worst of all. That was where we started.
It was bad, too, when she began — rarely at first, then more often — to want something, and to take your arm and throw it towards the object of desire. But it was better.
As weeks passed, the peremptory grab gave place to a touch of feather delicacy, a pressure exquisitely adjusted to attain no more and no less than the required response. This was easier to take. We could interpret this new gentleness as an emergent consciousness of people and their feelings. That was an encouraging way to look at it. But it was equally explainable as an application of a principle of which Elly had an intuitive grasp, the Principle of Least Effort. A mere touch, now, was enough to bring Elly what she wished. But that we were attuned to Elly did not necessarily mean that she was attuned to us. The rude touch and the gentle one were equally detached.
Another mother, writing of another such little girl,[2] has called her ‘the child in the glass ball’. What is the task of those who try to touch the untouchable, to reach those who have found reasons to keep themselves separate? How is one to render the world desirable to those who do not desire it? One holds out a flower, a soft doll, an orange candy. One points at a bird. All are ignored, this time and the next and the next. How does one convey that touch and sight and sound promise pleasure, that the world rewards those who interest themselves in its varied faces? How — most lacerating question of all — does one reach that walled entelechy with news that people exist, that they are warm and loving and have need of each other?
One is mounting an invasion. Invasion is not easy. There are scruples, especially for those who themselves appreciate the mechanisms of reserve, control, and self-defence. There are risks that one will press too hard and injure the creature one is trying to help, or that one will find oneself insufficiently armoured against the steady unresponsiveness which it is so natural to interpret as rejection. It is not easy to push one’s way in where there is every reason to believe one is neither needed nor wanted, or to remain confident that what one is offering is worth having.
It is fortunate, then, that the actuality of what one is doing is so very simple, simple enough so that one passes through the strictures of one’s hesitations to
remind oneself that there is no point in getting so elaborate about it, because all one is doing is playing with a baby.
All one is doing is lying down on the floor beside her as she sits absorbed in one of her inconsequential activities, so that one’s eyes will be on her level when she looks up, one’s hand ready to make some small change in the pattern, to which she may respond but probably will not. Or one is standing by her crib, that symbol of her withdrawal, at once a certain refuge and a delightful toy. Into the crib she can retreat. Once there it becomes an extension of her body; she can bounce in it, leap, sometimes a foot into the air, and as she tires, rock and rock and rock until she falls asleep. Inside the crib her guard relaxes; she is at home. The crib is a model of her citadel. The crib is a good place to play games, the simple games the other babies liked. One makes an animal of one’s hand, for instance. Thumb and three fingers walk along the crib side; the middle finger, extended in front, quivers, sniffing its way. Safe behind her fence, Elly looks on with interest. The animal runs, stops, runs again. As Elly’s attention fades it scampers, along a bridge made by one’s other arm, right to Elly’s shoulder to tickle her neck, and Elly laughs. She likes that game, which is her father’s speciality. Soon she is extending her own arm for the animal to walk up. She puts out her foot for ‘this little piggy’) her hands for ‘round and round the garden’. Each game ends with a tickle and a laughing squeal. Now walled Elly sounds like any other baby. But with any other baby the games grow, change, lead somewhere. These are good games and we enjoy them. While we play them, Elly seems to be in contact. But when we stop she moves into herself again. She accepts the stimulation, but when it is withdrawn she does not miss it. Where do we go from here? One cannot tickle all day long.
The Siege Page 9