adelaidemedblog

After Med 1’s lecture “Living With Disability” I found my enthusiasm for working with my not-so-small autistic kid increase a few notches. It had been flagging over the past few months, in part due to my lack of time to work, which meant I lost an important sense of progress with him.

Working with him, in general, is a challenging exercise in being a compassionate human being. G had worked with him first (we both continue now), and she introduced me to him, and his parents, one day in the final quarter of 2006. I refer to it so ‘financial-like’ when it is not accurate at all - the best I can do. I had had no previous contact with autistic children, and it was interesting to see a little boy who, as I stared at his face, appeared as though he could not see me. My thinking has since changed considerably.

I stared at him, into his eyes, almost constantly. Watching G do her work was not very stimulating, the circumstance was boring, but when I looked, I stared at him. If I were to go back to that time and catch myself by the arm, I would say, “What are you staring at? Don’t you know it’s rude to stare?” Staring at someone, particularly in their eyes, is avoided by most normal human beings. It is an embarrassing act of exposing oneself to another. Don’t ask me why the eyes are the most emotive piece of our expressive machinery. And if they were to look my way… In his case, I was not afraid of his gaze. His eyes were distracted and devoid of expression. I realised later that the latter description was an error of my own observation. The way he moved his head and drooled onto his chin and his shirt was both disgusting and fascinating. A head too big for its body. Large front teeth. A morbid fascination with his genitals. The inarticulate movements of his fingers. Occasional disruptive and violent tendencies. A soft spot for Milo and Woody. I looked at the small creature before me, observing the way it moved, and avoiding its scratches and its reaches out with the hands, which were dirty from genital contact.

I started coming regularly, and on each occasion I would mimick what I had seen G do, I would produce the same reaction from him, else I felt I had failed. This was, more or less, a machine - a certain input would give an output, determined entirely by the input, and this would be applicable in a reversible fashion. “What colour is the sky?” “Blue” “What is your mother’s name?” “A” “Where can you go to play on the swings?” “Park”, and so on and so forth. Part of it was the simplicity of the questions. But even then I might have discovered something else if only I had thought differently. In that small room, with the door closed but the parents frequently in the next door living area, I was shouting loudly, frustrated and anxious that I was failing. What did they think, hearing this racket? If they thought anything, they did not mention it. I stayed a half an hour overtime, trying and failing to make him repeat the correct answers. The parents believed I had the right intentions, but I think now I did not.

One of the first things that influenced me was when I met a person who had worked with him for a long time in the past. She asked him to thread beads on a string, something I could not imagine his uncoordinated fingers performing in any dimension, let alone this one. He was unable to do it, and I expected this. Then, A brought in chocolate. I watched his eyes. They darted up and fixed on the chocolate. The beads flew onto the string as jewels on a necklace. And I was amazed. A living, thinking human being was somewhere there. There were suddenly four people in the room, not three.

A, his mother, has been able to relate some of her experience for me to understand him better. This, along with many other things, has given me some knowledge that I am fascinated by. We see the world in all its wonderful glory. The colours are clear to see, shapes and forms that make up the world are recognized and processed. Sounds are heard and filtered, tastes are identified, touch is felt, with its varying pressures or pleasure or displeasure, and smells enter our noses. The sensorium of the human experience is free in our enormous world, and all the senses are inextricably connected. At the same time, our experience is absolutely limited. Our brains have a certain capacity, and we exhibit this by auto-compartmentalisation. Everything we experience is filtered down to its simplest form, to what our body and mind believes it needs to know. This is my understanding. Autistic children are different in that their worlds are made up of everything in the same sensorium, but jumbled. Sounds, mixed with tastes, on top of smells and sights, within touch. They have an inability to process information that the brain receives in the same way as a normal person does.

Living in such a world, would you know what to focus on, if your brain did none of the work for you? Without a clear view of the world around them, autistic kids can be lost in their own worlds, with only one aim: to achieve that which provides them with pleasure. Savants, a group of autistic people who have genius-level abilities in various things (of whom many of you will have heard about), are simply those autistic people who have found their pleasure in doing something - and as a result of focusing every ounce of their energy onto it, they excel. It is amazing to see what the human brain can do when it puts itself to the task. Yet it takes someone with autism to reach such a high level. Normal humans have too much to distract them from the task at hand.

The lecturer today made a point of saying that stereotypes were harmful things. It takes a long time to overcome them. To forget what you learnt, true or false. I haven’t lost my thinking, but I need to. Looking at him now, at least I can see the human inside him. I don’t feel awkward saying hello or goodbye. I don’t feel strange talking to him in conversation. I don’t feel as sorry for his parents anymore. I do feel something when I am under his gaze. I do feel pressure to make the lesson interesting. I do feel like I am making a fool of myself when I try to make him excited about playing the “cooking set” game and say each ‘ingredient’ as I place the lego pieces into the pot. He is someone who will become more real to me as time goes by. He has planted his feet inside my realm of “violent autistic non-savant person”. Now if only I could run fast enough to catch him before he jumps into the neighbour’s swimming pool during summer…