The Socially Aware Autistic Child and Adult
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The Socially Aware Autistic Child and Adult


The Roots of Social Awareness
I will open this discussion by quoting the mother of one of the children I am going to talk about: “What use is it if they can play a Bach cantata, if they can’t integrate well with other people?” This is perhaps almost a cry of despair, and some of these children have come far enough in their awareness of their social predicament to echo that cry for themselves.

The title of this paper needs some clarification. Most autistic children are in one sense “socially aware” from a very early age. That is, they are aware of people as being a very different kettle of fish from things- and most at an early age seem in many ways to prefer things, when it comes to the choice. They know that people can make all sorts of demands on them to relate and to communicate, whereas things do not: given the autistic child’s particular problems, he will find that on the whole things are easier to get on with. One could say that autistic children generally seem to start off by being over-aware socially- over sensitive in the sense of having a sensitive skin, as it were: they have sensitive social skins in their dealings with people, they flinch from the social as if it were a painful contact.

In order to make sense of this, it is perhaps useful to present quite briefly my own view of the roots of autism- not simply what autism consists of, but something of the way in which autism appears to come about in terms of an order of events (Newson 1979). Most workers in autism nowadays seem more or less agreed that autism as such begins with some kind of brain dysfunction, which is present in the baby at birth. We do not yet understand just what this dysfunction is, but it may turn out to be a small malformation, or damage, or failure of connection, or perhaps imbalance between the different parts of the brain. This precise nature of the brain dysfunction need not concern us here: the important thing is its effect, which is that from birth is seems to interfere with the baby’s ability to “code” (or make sense of) messages. The messages that get scrambled are not just those which come to the child in spoken words (a problem which autistic children share with asphasic children). The difficulty in coding (or making, sense, or drawing out meaning) for autistic children is in terms of any kind of message that comes by any kind of body language. The brain dysfunction also interferes with the child’s use and understanding of timing- the way people’s actions fit in or “mesh with each other, both within one person and between people; and this is a very important point, because timing is absolutely essential to our use of messages: that is, to creating conversational flow. It is essential to communication of a turn-taking kind, whether we’re talking about a spoken conversation, or whether we’re thinking of preverbal communication- the kind of conversation without words which all of us are very used to having with normal babies, in which the baby coos and waits for a reply, we coo back and smile, and the baby smiles back in his turn.

People who have autistic babies, before they know the baby is autistic, begin to be aware of something not quite right in that early conversation without words. Now if we think of a baby who has a basic difficulty in making sense of human messages, however they’re coming in- and at this stage it will be facial expression and body language that are important- the immediate results of the failure to draw out meaning will be catastrophic. The mother bends over the baby’s crib and makes what seems to him to be meaningless grimaces; he tries to make sense of them but he can’t; the messages keep on coming (because mothers are very persistent in trying to get through to their babies); and something that persists but is meaningless becomes very unpleasant and indeed frightening. So the autistic baby’s earliest experiences of social interaction are likely to become more and more unpleasant to him, and this is why human relationships seem to go sour for him.

At this point he is likely to start to turn away his face from these attempts at contact that he can make nothing of. Perhaps to shut them out he will start filling his vision with repetitive movements- flicking, flapping, rocking, running and so on, all of which help him to ignore these confusing people. Soon, he finds that things feel safer than people, because activities with things can also be repetitive and unchanging: lining up little cars or just spinning their wheels, twiddling a spoon near the eyes, flapping a belt, or simply turning an object over and over in the hands. So the child goes for predictability, familiarity, things that don’t make demands on his understanding and his communication; and this defensive reaction develops into all the mannerisms, stereotypes, rigid ways of thinking, and ritualistic, obsessional behavior which we are so familiar with: a safe cage of rules, within which the child protects himself from the world- but in which he becomes prisoner.
 
Social empathy
Most autistic children, if their parents don’t give up trying, do eventually become more socially appreciative in that they begin to be rewarded by social contact and even body contact. They begin to take pleasure in the expression of affection and in the social approval of the people they know best. But the kind of social awareness I want to discuss here is the sort which can only happen when a child moves beyond simply taking pleasure in other people, and begins to understand their messages well enough to have some kind of inkling of what it is like to be the other person. At this point we are talking about social empathy with another person- the ability to see things from another’s point of view.

Now when this begins to happen with an autistic child, it can be very difficult to be sure whether in fact it is happening or not. I want to give two examples of this. One adolescent boy, we’ll call him James, has a tremendous skill: he can split hairs. I’m being literal now (like autistic people). James can indeed split hairs, and when he has split them- he does it with his finger nails- he sticks them together again with sellotape. And that is his major skill, and his room is full of these beautiful little hairs, which have been split and have been stuck together again. I was staying with his family a while ago and in the morning James and I were waiting for his parents to get ready to go out and suddenly I realized he was doing this. I said to him “What are you doing, James?”- being well aware of what he was doing, but wanting to know how he saw what he was doing. And he put his head down and looked very embarrassed and he said in a low mutter, “It’s embarrassing.”

This I think is a very interesting little episode. I don’t know whether James knows what “embarrassing” means, except that it was clear he was embarrassed. But did he feel that it was embarrassing to me? Certainly the way he had learned about “it’s embarrassing” was that it was embarrassing to his parents, and they had said that to him. And they hadn’t meant that “it’s embarrassing to you,” they had meant “it’s embarrassing to us”- to them in public. But James certainly looked embarrassed when he told me this. And so we come to this gray area where you can’t be sure precisely how far the child really gets at the other person’s point of view.

The second example is one of my favorite stories because it illustrates so many things about this kind of child. A parent wrote in “Communication” of something that happened one day with her adolescent son. She called out to him from another room, “While you’re out, buy me some cloves, I haven’t got any; take the money from my drawer.” When he hadn’t returned after three hours, she looked in the drawer to find he had taken 30 pounds. He finally returned home with smart boutique carrier bags from which he produced the “clothes” he thought his mother asked for, in teenage styles quite unlike the clothes she normally wore, and including bra and pants.

Now this is a story which beautifully illustrates the persistent lack of social empathy in an able and clearly much recovered person. Here is somebody who can be trusted to go to town and buy things; his mother expects things of him. But having once misheard her, he doesn’t have the empathy for what she would be likely to ask him to get, in order to correct his mishearing by saying “You can’t have said clothes?” So he accepts the request; not only that, but any clothes that he finds attractive will do very well. He doesn’t feel any need to ask himself “Will she like this? Is this the kind of thing she usually wears?” And I think we can also assume that he doesn’t feel any embarrassment in buying women’s clothes in a boutique, because he doesn’t have the empathy to realize that the sales girl may think it’s all rather strange…

There are in fact autistic children- and this boy is one of them on other occasions- who do begin to think of other people’s feelings rather than being totally immersed in their own, and begin to see things from another’s point of view. Achieving this empathy is, we have to say, the most difficult attainment for an autistic child. But the implication of it is that the child begins to build up a self-image, an idea of what kind of person he is, and he may or may not be happy with what he sees; and that can result both in enormous problems and also enormous progress.

Now because the achievement of social empathy is so very difficult for the autistic child, it is extremely unlikely to happen unless the child has a relatively normal intellectual level. At Nottingham, Mary Dawson and I, in collaboration with Peggie Everard, are halfway through a DHSS funded study of young autistic people of more-or-less normal intelligence. We hope to have nearly a hundred children in our sample by the time we complete the project.

We’ve chosen this particular group in the hope of learning more about the factor of autism as such, by taking out, so to speak, the additional complicating factor of mental retardation. The autistic people we are seeing are mostly in their late teens or twenties because we thought it important to get a very full account from their parents of the whole course of their childhood and early adulthood. Most of the information does in fact come from their long-suffering parents; and I’m now talking about how long-suffering they are of us, because Mary interviews them for two days. There turns out to be ten boys to every girl in autism overall. In the rest of this paper I want to discuss some of the preliminary impressions which are coming out of the study, based on our first 60 cases.

I have to say right at the start that none of these young people have quite normal social awareness. At the very least we are finding repetitive conversation, repetitive arguments, people who don’t understand that they might be getting boring. Well, there are lots of people like you that might say: but autistic adults in particular are likely to go on and on without realizing that the listener’s eyes are glazing over, and because they are obsessional, their obsessions fuel this kind of endlessly recurring conversation. Their repetitive information-giving or repetitive arguments may even become quite bizarre without their noticing, despite their normal intelligence. As one mother describes it, “He sometimes really wants to talk and talk. He’s changed completely now- he now almost talks too much…He takes very little notice of your responses in a conversation. He converses more to satisfy himself than to communicate to you.” Some will converse normally for a brief space of time and then suddenly switch off without warning; or they may forget to say goodbye; or they fail to give feedback to people- the nodding and the “yes, yes” which we unconsciously do when someone is talking, to show we’re listening.

Most seem to find it extremely difficult to predict other people’s reactions to them. To give an example: Richard, aged 17, at the beginning of a very bad period of misery and self-disgust, in the middle of a tirade against his mother came out with: “There’s nothing left for me, I’m going to kill myself.” And his mother burst into tears; and suddenly seeing her tears, he was very concerned and said “What’s up?” There was no prediction, indeed no understanding that what he had said might really get to her and make her cry.

Many of these children, as I’ve said, are classic club bores about the things that interest or obsess them. But at the same time, they find it very difficult to remember to ask the ordinary questions of sociable living; for instance, if they know their parents have been out, they are unlikely to say “Did you have a nice time?” when they come in again. Or the other way around when their parents say “Did you have a nice time? What happened?” they find it extremely difficult to answer in a chattily informative way, and parents may often find they have to pry out every bit of information, even during a conversation where in fact the information is necessary for the conversation to proceed. 
 
Changing Horizons
One of the immediate benefits of some degree of social awareness in a child is that because he has some kind of idea of what kind of person to ask for help, or where to look for information if he’s in an unfamiliar place, it becomes much more possible for his parents to allow him to take risks. Jean Poitevin made the provocative point in his paper (to be published in the International Newsletter) that autistic children need to be allowed to take risks. In this particular group, parents are constantly doing this, and some of the histories of these children are indeed histories of risk-taking parents- always, I think, with their hearts in their mouths, but very often with pleasant surprises. To illustrate this, 4 out of 5 of our sample can in fact travel from one town to another, with a certain amount of organization by their parents; that is to say, the parents find out in advance where they should go, what they should do, and there’s a fair amount of pre-planning. But 2 out of 3 can organize the whole thing themselves; and for some of them, traveling hopefully is indeed better than to arrive: traveling is hopefully their thing because timetables are their thing! Now it’s obvious that to be able to travel as far as between towns immediately, literally, opens up horizons, and that is of enormous benefits for this particular group.

Another kind of risk that happens for some, but not perhaps for many, is that parents may be able to take the risk of allowing their autistic child to compete with normal people on normal terms without preparing the way too much. We have one or two who are going to, perhaps, places of further education without any preparation being done, so that in a sense they sink or swim. Often, of course, problems arise, sometimes too great to be coped with without help. But if they can manage to swim, there are great benefits in the sense of achievement, and also in not acquiring in a new social group the stigma of handicap. Let’s be honest about this. None of us wishes to be called handicapped. We wish to compete on normal terms and not to have allowances made for us, and most of us would prefer to be thought of as eccentric rather than autistic. At this point we have to have some empathy for the point of view of the handicapped person and ask ourselves just what are the spin-offs of not actually being labeled as handicapped. For a few autistic people this is a real possibility; not for very many.

The wider horizons give more opportunity to make normal friends, and some want very much to do so. They will take enormous risks, in order to join a peer group. When I say enormous risks, I mean just that. Several of them who have gone to clubs or pubs on their won have suffered for it by being physically assaulted or verbally assaulted. Let me quote one mother: He went to our local youth club- they were first of all thrilled, because Donald is tall, he makes a nice goalie, and all these little boys hero-worshipped him. But they soon found out- it doesn’t take them an evening you know to find out that something somewhere isn’t O.K. and he would come back from the club, the first one- he must have tried about ten clubs all around here- he’d come back beaten up, spat at, his jumpers all torn. They emptied their noses all over him- the number of pullovers I’ve had to throw away. I mean I just could not wash them, they were so disgusting…They threw burning matches at him. They beat him up. I used to see sometimes because behind our garden we had this large playground and the boys were there. And he saw the boys playing there, kicking a ball or something, he would go and play with them, and it wouldn’t take half an hour before he would be beaten up. And I would watch this and I said to him one day, “Donald, why do you allow this?” and he said, “Well, it’s better than nothing, I don’t mind.” And I think he was so desperate for some contact that to be beaten up was better than being alone. And that was a nightmare and that went on for year after year, one club after another.

One boy who has great difficulties with his timing and gestures and walks in a rather odd way, had been perceived as homosexual in the pubs that he goes to with his friends, and this has been a massive practical problem for him which also didn’t help his self-image and self-confidence. Eventually in fact he solved this particular difficulty by improving his body timing.

Two of the boys have friendships with normal boys which have lasted and which exist outside of work; with both these boys the friends are university friends. Quite a lot have acquaintances whom they regard as friends but their parents don’t think they’re “real” friends. Four of five have had friendships at school, which didn’t in fact last once they’d left school. Six of the boys occasionally take girls out or have girl/boy friendships. A third have an interest in girls, but many are described as not being interested or never having been interested, not apparently sexually aware. It is interesting that only a third appear to have heterosexual interests because, in the smaller group of girls, half of them (three out of our six girls) have boyfriends or have had boyfriends to the extent that there has been one engagement: one engagement the girl broke off, one engagement ended sadly in the death of the man, and in one case the girl has married. I think this difference emphasizes the difficulties for boys in that on the whole, in our culture pattern, even if they have a girlfriend and want to get married, they have enormous difficulties in the preliminaries, especially in flirtation and courtship behavior. One particular boy is very aware of this. He said at the age of 18, “People send each other messages with their eyes and I don’t understand those messages.” And this is an example of his social awareness that the messages exist but he can’t tune in on them. This boy in his twenties goes to discos with his normal friends and watches them picking up girls, and he is very aware of their flirtatious glances and other body language and he is very conscious that, as he says, “Girls’ eyes go cold when they look at me. They give me these glances which say ‘not for you, not for you.’” Self-loathing despite a very high academic achievement can result and that particular boy has been intermittently suicidal for eight years.

This boy and one are two more are looking at themselves and hating what they see; others seek information about themselves, which show that they are conscious that they appear different. One nineteen year old often asks, “Is that a normal thing to do or is it abnormal” Another one loved the Osmonds because of what he considered “their lovely smile” and would ask “Have I got a smile like theirs?” Motivated by his realization that they were perhaps better at smiling than he was, he tried to emulate their smile, with quite helpful results.

Another boy in his twenties expressed one way in which he was different at his grandfather’s death: his mother asked him, “don’t you feel sorry for Grandpa?” and he replied, “No, I feel it difficult to feel sorry for anybody.” One boy was aware at eight of having serious problems: in a game of “What do you most want to do in life?” he replied, “I would like somebody to cut my head open and change my brain for another,” this boy became deeply depressed around eleven or twelve.

Many of these young people go through periods of being depressed and moody between 16 and 24; and these findings parallel those referred to by Lorna Wing and Derek Ricks (1980) among the less able group, who often seem to come to a full stop in learning and even regress at about that age. A number of things seem to trigger this unstable period. In terms of life events clearly this is likely to be a period of uncertainty when school placement is coming to an end and further education makes possibly too great but inevitably very difficult demands; while some young people may find themselves trying to cope with jobs, suitable or unsuitable for their needs or abilities, or faced with very little occupation at all. The developmental and growth spurt is disturbing to some, especially if they see it as a sign of adult maturity which they do not feel ready for: one boy was horrified by the fact that although he now was bigger than his father, he did not feel capable of leaving home. Unless they are totally sheltered from the world (and it must be remembered that most are getting about both within and between towns), they are going to witness adolescent relationships going on all around them; and this may well act as a spur to their own social awareness, while also giving them evidence of how complicated the social skills of adolescence are and how difficult for them to compete with.

Five of our sixty have suffered a clinical state of depression in adolescence and as one mother put it, “to have someone who’s handicapped is one thing, to have someone who is also sad is very trying.” However, the majority in fact come through into calmer waters after a period of moodiness and less engulfing feelings of depression. We can estimate that about two-thirds of the group are currently on an even keel. Of the rest, seventeen are very easily upset. These are on a knife-edge of balance, ten being easily cast down, six easily becoming angry or aggressive, and one or two being aggressive or cast down according to the mood of the moment.

Although many of these young people are more independent in their daily living than they have ever been before, they are all in some way more dependent upon their families for support than a normal person of similar age would be, although some are financially self-supporting. In particular, most require a great deal of emotional support and reassurance, and it is perhaps a measure of how far they have come in social appreciation that they look to people, especially their own family, for this. For some, the major feature of their sociability is also an indication of their lack of confidence: a rather desperate need for approval, a hunger for reassurance that they are doing the right thing, which perhaps evidences a persistence of the deep egocentricity which seems to be one step up from total autism.

Mothers in particular frequently say that their relationship with their child is closer in the twenties than it has ever been; having come through the tribulations of adolescence, they and their child seem to discover new ways of relating to each other, perhaps of communicating with one another. Sometimes it seems that the young adult himself both recognizes and is reconciled to his dependence: sometimes his dependence is bearable because it is paralleled by areas of independence made possible and maintained by his parents. Perhaps for some parents there is an acceptance of limitations which partly comes out of their relief at having come through major traumatic crises in adolescence. Although so many describe their relationship as very much strengthened, they tend to do so in phrases such as “as close as it ever could be;” they would consider a normal close relationship is not in fact possible for this child.

A few of the very brightest of these young people have found niches in which they can make their intelligence work for them so that on a work level they are accepted as real contributors on equal terms, although the social side of their lives remains seriously depleted. However, others of the gifted group have rejected their talents or just allowed them to slip away. For parents this is hard to cope with, particularly as for years the child’s major talents and the chance that this may be accepted by the world as compensatory for what he lacks in other ways. The father of a boy who has given up his music:

“I find the waste hardest to bear- the waste of his life- that he could do certain things and it is not now his cognitive handicaps but his cognitive volition. He could have a marvelous life, but he just won’t…I think I’ve managed to accept it, and I know that this is the result of a handicap. It is a handicap which is the result of something beyond his control and everybody else’s as well, I think- and it’s no good raging or anything like that, it’s got to be accepted. I’ve tried to…I try to enjoy his company as he is…sometimes he’s lying on one bed and I will go in and just lie on the other bed and will say what he says- which is absolutely nothing- and, er, there is a certain peace in this.”
 
Implications for education and treatment
Much of the research on autism has centered upon the younger child: partly because these are the children who are most easily available to research workers, being found in schools and hospitals, but also because support for autistic children and their families has been so fragmented and sporadic (some would maintain that it still is) that the older children have almost been regarded as a lost generation which has no relevance to a properly diagnosed, properly educated generation. It is indeed very clear that our sample of children have stumbled their way through poorly mapped territory, their parents coping, sometimes battling, as best they might with services that were rarely adequate, sometimes destructive, and most of the time ad hoc or experimental in relation to the child’s needs. While we knew from the beginning that we wanted to look at adolescents in order to monitor the period of transition from school to whatever followed school, we quickly discovered that it was necessary to extend the age limit upwards rather than reduce it, in order to learn more about the movement towards greater stability that for so many children followed the miseries of adolescence.

Clearly, if we were not aware that social behavior can become strengthened and stabilized in the early and mid-twenties, we would be in grave danger of recommending withdrawal of educational and therapeutic services at sixteen or so, or the apparent justification that “these children regress in adolescence.’ The evidence of the work with this group at least is that this is not, may well be the result of the strength and determination of their hard-pressed families.

The main implication of this study for services for the autistic adolescent and adult is that those of normal or near-normal intelligence will in fact benefit from continued education suited to their individual needs. For some, existing services in further education are suitable for their cognitive abilities, but they still have a desperate need for advanced social skills training which builds upon the growing understanding of their own social predicament. Others will need a work experience training more closely to their special problems and again combined with relatively advanced education in social skills. Most specialist schools for autistic children are, of course, very conscious of their responsibility to include social skills prominently in the curriculum; but it does not appear from this study that the majority of autistic people will not be ready to tackle the more subtle sophisticated level necessary for something approaching normal social involvement, until they have begun to experience the complex demands of adolescence and early adulthood. At that point, ironically, they may find themselves abandoned by educational and therapeutic services, just when their need is greatest and when they themselves are becoming more receptive to such learning. There is every indication that this group and their families not only need crisis support during the adolescent years, but would benefit from provision of appropriate therapeutic educational facilities during that period and beyond it; indeed it is evident that many, at present thought to be fragmented and often unsupported efforts of their families, continue to make progress well into their twenties.
 
References
Newson, E. “Making sense of autism: an overview” NSAC, London 1979
Poitevin, J. French report to the international discussion, NSAC International Conference, Warwick, 1980.
Ricks, D., Wing, L. “The handicapped in hospital.” Ibid, 1980.
 

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