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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Wednesday, January 25, 2006


Decoding Perception

In my previous post, Body and Mind, I try to decode Adam's perceptions and experiences through the eyes of Tito Mukhopadhyay, autistic author of several books including The Mind Tree.

This is all about understanding autism and decoding perception -- someone else's. In Adam's early years I watch him curiously, learning from others how he might be experiencing his environment. But even these clues from Tito are not necessarily Adam's experiences.

Autism as "mystery" is at the heart of our fascination. Science thinks it can solve the "mysteries" of the brain. In 1977, Noam Chomsky was not optimistic about the future of brain research. He said: "It may very well be that, among the theories we are unable to attain by our biological endowment, there is included the theory of will appear that human beings have mystical, unintelligible properties because we, as biological organisms, will not have within our range the theory that would, in fact, explain it."

Each scientific community -- neurology, psychology and so on have so many of their own theories about the brain, and yet even today, all of it still remains pretty much a mystery. Autism can be viewed as the embodiment of this metaphor. We are fascinated by autism for what it shows us we can be (ability) for as much as what is different. The idiosyncratic language, the sensory issues (which seem to be an oversensitivity and heightened awareness of the environment), to non-verbal intelligence...our society is curious to know how we tick -- and autism is a part of this search. We are similarly interested in a stroke victim's ability to adapt -- using different parts of the brain to relearn speech is a good example. A real mystery is also that -- human adaptability. Perception is elusive. Yet, it is all we have -- seeing how an artist views the world can shed light on how we view it -- it can make our world, our perceptions more three-dimensional.

What is perception? Is it a visual world? Is it something that happens to us? Is it tactile? Certainly, perception is different for all of us... the blind perceive and experience the world differently from those who are not. The way they describe their perceptions is not at all the way I might describe the same experience. Perception is the biological as well as the psychological, and as much as biology takes a part in autistic perception, the psychological and enivironmental factors also take a role. In addition, there seems to be some universal perceptual consensus -- for example, we all agree what "red" looks like so we,for the most part, have a universal perceptual language. Do we feel red the same way? The experience, and language is different for a blind person who has never seen red, but who may interpret red. That said, a colour-blind person also has no concept of that visual language. A full understanding of the mind is intangible. We may be able to plot physical and chemical events that an object triggers in the retina and in the perceptual centre of the brain, but will detailed knowledge of which nerves fire and the patterns of nerve activity ever adequately describe the experience of seeing the object?"

I consider Autism and human evolution -- a language distilled, that is, a different language, non-verbal, visual, musical, mathematical -- a language without words. I've heard of speculations that human language will evolve from verbal language to a sort-of computer movement language -- highly visual. How have computers even altered the way we think and the way we communicate today? Perhaps that language is easier to comprehend for those with autism?

Adam went to the dentist a couple of days ago. It was not pretty. He's been pretty good so far, but for whatever reason, the dentist, before showing his face to Adam, went right into his mouth from behind, holding his head down with his arm while his purple-gloved hands pried Adam's mouth open. Adam was terrified, I think, because of this. It is like when Henry approaches him from the rear to put on a shirt with a narrow hole and Adam can't see for a couple of moments...not only could he not see Henry coming from behind, but all of a sudden, he is blinded and confined by the hole -- and again, he is terrified. Trying to put the pieces together, I am presuming that Adam is highly visual and anything that impairs this skill that he has come to over-rely on, is exceptionally scarry. If all of a sudden I lost my sight, I would be afraid. If I lost the feeling of my legs, I would be terrified. We come to rely on our strenghs. Adam's strength is his sight -- but what of his perception? This is what I'm always wondering about -- what does Adam see that I cannot understand? Is this sense like looking through a thick lense -- blurred and images melded together? Or his his sense so sharp and lucid -- that the sharpness of colour and line can be painful? I would like to look through this lense one day. The closest I've come is through art. For me, it is the unviersal non-verbal language. Or music. Right now, Adam does not verbally offer many clues, so what I do is decode his behaviour. Like the curator of art that I once was, I decode perception.


Blogger Kristina Chew said...

Hope the dentist visit does not have a long-term effect on Adam.

Reading, decoding, Charlie has become the study of my life, very joyously.

12:05 PM  
Blogger Estee Klar-Wolfond said...

Normally, he hasn't had such difficulty at the dentist. I think it was approaching him from behind that was offensive.

Bad news is, he has very sticky bacteria on his teeth (like his dad) which needs constant dental maintenance -- he has to go through his second general anaesthesia in order to get a number of fillings in. Last year, he had tubes put in his ears. I am mortified that this is becoming a yearly thing (G.A.).

1:08 PM  
Anonymous Bonnie Ventura said...

I'm not sure that any of us, no matter what our neurological type, can ever fully understand another person's perception of the world. Not only do we have differences in our physical senses and our brains, we also process words differently when we try to understand the language that others use to describe their experiences, or when we try to describe our experiences to others. When you wrote the word "red," it produced different images in your mind than in the minds of your readers.

I expect that differences in human perception will always remain a mystery to some extent.

8:09 PM  
Blogger Estee Klar-Wolfond said...

And yet...the fascination and urge to decode, or interpret someone else's perceptions, especially in autism or as in art, is irresistible.

Thanks for comments and insights!


8:23 AM  
Blogger Mary P. said...

You're from Toronto, you have a son with autism, and you've read some of Donna Williams, so I'm assuming you must have heard the CBC Peter Gzowski did with her some years back. Gee - is it as many as twenty years already? It could be so long ago, so maybe you haven't heard it.

It was a fascinating interview, for many reasons. One thing I remember that has relevance to this post: she commenting that to most people, grass is green, but she sees every blade a different shade, texture, hue; she gets lost in the myriad of sensation of the grass.

Gzowski did a follow-up comment on how they set up the interview so that she could be as comfortable as possible. It was fascinating, and he was so kind and respectful. (Lord, I miss that man!)

8:22 PM  

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