Autism is a condition about which many have written, but little is understood. Caroline is teaching us, but the principles are hard to follow, when all our expectations are rooted in a developmental culture which is not hers. Was it always different? Our earliest memories differ from those of her parents, and it is hard to tease out what is later perceived from what was really happening. What, for example, do babies do first, to be sociable? Why, they look at the beaming features looming down from above, and after about six weeks in the world, they make eye contact and smile back. Babies, it seems, have an in-built preference for the complex configuration of light and shadow which is provided by the human face. Not Caroline. Her gaze was firmly averted from us from the earliest fuzzy moments of focus, in search of other, more absorbing shapes and patterns.
What else do babies do? They enjoy companionable contact, and so even when not hungry, thirsty, wet or otherwise distressed, they will cry until they are picked up, and then stop. They like to be held and talked to. So did Caroline - with some people but not us.
Caroline always cried when we walked in, and screamed if handed to one of us to hold. What could have been the reason? The angle of the light in the room was making us appear dark and menacing? Maybe the shape of the room, the position of the door, made our entrance a surprise to her and frightened her. Maybe she was teething and it was nothing to do with us. But the wailing and increasingly angry reaction to any overture made by either of us became harder to explain in any other way than that she didn't want us to be there.
At the age of 13 months, it was discovered that Caroline had a severe heart condition, and at 15 months she was operated on successfully. We assumed that this was the answer to all the early worries, and that our relationship with Caroline would now achieve the closeness we experienced with her sisters. Her behaviour continued to be different, though, and her communication skills were clearly severely delayed. She also had conductive hearing impairment (or "glue ear") which was cured at age two with grommets. Autism was finally diagnosed six months later.
What is its impact on everyday activities? Taking Caroline out for a walk, once she was able to move independently at around 18 months, was an impossibility. Her routes were complex and seldom, if ever, coincided with ours. Even if we succeeded in following familiar pathways, there would be small rituals to observe which could not be varied. Crossing the road had to be done on this corner, not that, and no stopping was permitted, even for the briefest exchange of greetings. Shopping was out of the question except for one baker's shop, where the price of entrance and lingering was a gingerbread man. We phoned ahead to ensure that they had not sold out. The penalty for deviating from Caroline's rigid routine map was earsplitting screams, a plunge to the floor and the impending threat of a citizen's arrest for child abduction.
Fortunately for us, Caroline still loves to travel in her pushchair. And here different rules apply. Once propelled on four wheels, the route can be much more negotiable. The pushchair was a blessing above all other as it has provided us with the opportunity to introduce her to new places, and see what she made of the changing experience. Hedges, fences, walls and nettles provided her trailing hand with a rich texture; mud, puddles, gravel and sand were explored with relish and frequently also eaten. We quickly discovered that certain nodes in this mental map were pivotal and once reached, dictated absolutely the next direction to walk in. But if you released her at a new place, then the way forward was open to negotiation. And when you wanted to return home, the trick was to pick up a familiar "home" route marker and she would lead us to her house. Our explorations together became richer and she loved them.
Baby-sitting was a potential nightmare. Would she waken? And if she did, what in the world would we do? The problem was solved for us when she did wake up one night, and screamed until I appeared. Our instructions from her parents were to take her downstairs, give her a drink and let her do as she chose, after which she would take herself back up to bed. And this was exactly what happened - once the familiar routine was open to her to follow, she followed it and, provided we imposed no new element, she was content. No change was allowed, until she varied the pattern herself. All we had to do was learn these rules and conform.
Playing with Caroline is a one-sided event. Objects take on strange new properties, once they fall into her hands. Anything small - pebbles, dry pasta, stacking bricks - is pourable, and is therefore poured endlessly into any available container. Joining in this activity was not allowed, and any intrusion would be dealt with by strategic withdrawal behind the curtain - sharing is not part of her plan. However, it became possible to bend this unwritten rule by capitalising on another element of her personal organisation, which was that we were available to meet her needs when she could not serve herself.
Water is her great delight, and has become ours too, for while water in small quantities could be poured in solitude; water in larger quantities needs help. In order to get the paddling pool in the garden filled, get to the swimming pool or walk down the beach to the sea, she needs assistance. We were allowed into her watery routines and began to learn Caroline's rule of turn-taking. This was, that you were a handy tool and had a use at specific times which were determined by her. When the bowl of water required refilling, it was your turn. When the pouring container fell out of the paddling pool and out of reach, it was your turn. When her clothes needed to come off, and a swimming costume put on, it was your turn. We have to be content with a robotic existence serving Caroline and learning daily from her about the composition of her world. Occasionally, after she had been training us all for some months, we were able to obtain that fleeting, magical contact with her focused gaze and believe that we were real. Just once or twice, chilly arms enveloped in a towel would seem to cling, to hug - was it possible?
Yes, it seemed that it was possible. Suddenly there was a new development - Caroline began to laugh at us at around the time of her fourth birthday. We had heard her laugh before, but this was different. This was not the giggling produced by tossing her up in the air, which was long familiar and which resembled the chuckles heard when she fell over in the bouncy castle or came down the slide. Whereas the laughter we had heard previously was for movement, physical sensation, this new amusement was in response to the actions and reactions of people - us. Suddenly, the game of "disappear and reappear ... boo!" came into her repertoire, and she found it hilarious. I still cannot really believe that we taught this to her. It just seemed to come "on line" at the appropriate stage in her own very individual development. Suddenly, our mutual activity became amusing and she was asking for more of it. And so we moved into an era of early turn-taking which bore a closer resemblance to the games we knew with her sisters.
Talking and understanding talk in the conventional way remains unavailable between Caroline and us. Autism has its own syntax, its own internal grammatical structure. For example, Caroline's language code revolved around the instrumental "do this, give me this", and never extended into the declarative "look at this - come and share this with me."
Then the tenses, beginning with "present concrete". This is demonstrated by Caroline grabbing and holding on ("I have"), or by others when offering something tangible ("do you want ... ?") Next came the "future present immediate", a tense which was transparently visible and signalled by Caroline by push- pull tactics, and by us with suitable props to talk, such as "drinks times!" (and here is your cup) or "time to go out in the car" (jingling the car keys). So far so good.
Gesture and mechanical propulsion served, and continue to serve, most of her needs. Children with autism are good at pro-ducing clear directives to obtain what they want - so long as that "want" is accessible. The procedure is simple. You take someone's hand and lead them towards the cupboard where the biscuits are kept, place their hand on the latch and wait. Easy. Videos are "requested" by positioning you below the shelf and waiting to be lifted up to make a selection. The choice of tape is then placed in your hand which is directed towards the video machine. Delay causes increased fussing, culminating in screaming, stamping and bouncing like a bunched wire. When dragged into the hall to have your hand placed on the door handle, a walk is desired. No problems, so long as what is required is actually physically accessible.
Caroline's communication problems start when the wished-for item or event is out of sight and reach. Most remote events are, literally and metaphorically, beyond our mutual grasp. How, for instance, could Caroline tell us that she would like to see someone not present, go somewhere specific outside the house, or obtain something that was not physically accessible? Where her sisters had rapidly acquired the ability to get their meanings across by means of powerful combinations of sound, word and gesture, this communicative avenue was not open to Caroline. Her strategies were limited to the one way street of direction, which requires the compliance of the other. The more complex two-way channel of communication requires negotiation and clarification, and Caroline does not have these skills beyond showing her distress and relying on our interpretation of what has gone wrong.
This complicates "messages inward": we are unable to let Caroline know about any new event about to happen. Visible tangible reference points are essential for Caroline to encode and decode meaning, and these have to be both consistent and discrete. Statements such as "we are going out to play" (and being led to the coatpegs) could all too easily be confused with "we are going home" (and being led to the coatpegs). Events in the "future remote" for this child are journeys into the unknown and therefore into fear. Consequently, every non-routine event is an assault on her senses. Explanations are of no use to Caroline.
Once communication enters the linguistic twilight zone of "future remote" you are in a world where meaning becomes impossible to grasp hold of and examine. These airborne signals of word and phrase held no meaning in themselves for Caroline; for all we know, they may have resembled the scrambled soundwaves of radio jamming. The only certainty was, that every piece of information had to be conveyed by observable associated evidence. Any unanticipated outcome in the early days produced a traumatic reaction, and so Caroline was in danger of restricting her own life and her family's to repetitive circling around a familiar maze, with no way out. Surprise events are still likely to produce a traumatic reaction, but now we can "tell" her about future routine events by using certain reference objects.
Communicating with Caroline has involved a steep learning curve for us all, but she is now teaching us very efficiently how to function in her world. Objects are the thing, and have a message to deliver. Some messages are clear - the cup thrown over the safety gate into the kitchen, or the booster seat carried over to the chair by the dining table. This gave us the clue about how to make our input messages to Caroline work. "Going home" is now signalled by giving her a large plastic key on a brightly coloured curly keyring. "Going to playgroup" is understood, when she is given a red bag with a photo of her special helper on it. "Going out to play" is recognised, when she is given a soft ball to put in her coat pocket. This use of objects to reference her wishes and support her understanding is a most welcome stage in her very individual development.
We believe these routines will underpin Caroline's use of spoken communication, and have encouraging evidence to support that belief. Caroline now waves and says "goodbye" when we leave. Even more importantly, she has clearly discovered the power and flexibility of language. "Goodbye" has also become a signal to play her favourite game of "disappear, reappear ... boo!" or "goodbye" with a push enables her to reject activities, food and people she has had enough of. Words have become useful tools, at last.
Language has primitive origins. The drive to communicate is born of the basic survival instinct and the need we have to be sociable. For Caroline, possibly only the first element is a real need. We have been witness both to Caroline's attempts to survive in a culture alien to her own, and to her developing communicative strategies. We observe as she explores this strange environment and identifies what it has to offer. Caroline is developing her own world view. Our hope is that these observations may help us to learn more about the colour, shape, texture and organisation of Caroline's world and to share it with her, on her terms.
"If you would help me, don't try to change me to fit your world. Don't try to confine me to some tiny part of the world that you can change to fit me. Grant me the dignity of meeting me on my own terms - recognise that we are all equally alien to each other, and that my ways of being are not merely damaged versions of yours. Question your assumptions. Define your terms. Work with me to build more bridges between us." (Sinclair J, 1992 from Autism - The Invisible Children; The National Autistic Society, London) !Reuse content