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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

Friday, February 10, 2006


Sensing The World Into Existence

What if Adam can sense the world? What if this sense, his intuitive sense even, is more robust than his other senses? In my conversations with Donna Williams, this seems plausible. I have been so focused on visual-spatial skills, but not of Adam’s other sensing mechanisms. As I was disorganized and literally sick to my stomach at temporarily losing some of my vision at the eye-doctor (see yesterday's post "Unfathomable Mind"), I realized how I have come to over-rely on my vision and hearing, and under-rely on my other kinesthetic and other sensing mechanisms. In essence, those of us that share the same faculties have come to view the world through a very narrow tunnel of vision – where other worlds can be experienced through different avenues of perception.

This led me to think about Bruce Chatwin’s The Songlines, which I read years ago. The main character, Arkady, spends time with the Walbiri Aborigines of Alice Springs. The Walbiri sing the “world into existence.” Without having traversed the country, the world doesn’t exist.

“He liked Aboriginals. He liked their grit and tenacity and their artful ways of dealing with the white man. He had learnt, or half-learnt, a couple of their languages and had come away astonished by their intellectual vigour, their feats of memory and their capacity and will to survive. Arkady learned of the labyrinth of invisible pathways which meander all over Australia and are known by the Europeans as `Dreaming Tracks,’ or Songlines to the Aboriginals as `The Footprints of Ancestors’ or `The Way of the Law.’ Aboriginal Creation Myths tell of the legendary totemic beings who had wandered over the continent in the Dreamtime, singing out the name of everything that crossed their path – birds, animals, plants, rocks, waterholes – and so singing the world into existence.” (Bruce Chatwin, The Songlines, p.2).

Does what we perceive really exist? If it exists does it exist in the same way for others? As I consider that a blind person perceives the world entirely different from the way I do, I can easily suggest that we each perceive the world differently. If we believe this, then we must believe that the way people with Autism perceive is differently from us, and even among themselves as a group labeled Autistic. If perception is different, then we must completely rethink the way we evaluate and teach people with Autism. ABA leaves little room for creativity, discovery, and kinesthetic exploration. We are dealing with a group of people who are simply human with a set of different sensing and perceptual mechanisms – entirely valuable, completely fascinating. As I consider this along with my own biases, perceptions and the layers of belief systems that I have inherited through an inflexible world, I am coming to appreciate Adam and his wonderful complexities.

Like the Walbiri tribe, I suggest that Adam is sensing his way into existence. His visual and touch senses, his intuition, his ability to feel rhythm and pattern may be his strategies for making sense of this world and finding himself within it. While we both make the journey to cross each other’s paths, as his parent, I am obliged to SEE him, his world, as much as I hope that he will continue to join me in mine.


Anonymous Bonnie Ventura said...

A very common theme in fantasy novels is that naming people or objects allows an adept wielder of magic to shape and control their existence in the magical realm. Sorcerers carefully guard their true names, lest their enemies gain power over them by learning their names.

It's also fairly common for autistics to consider precision in words to be an important part of keeping the world in good order generally. If we're not sure of the right word to bring the described object "into existence," we may be more comfortable not speaking.

When I was a small child, it seemed very important to me that everything should have its correct name. I once got stung on my foot when I was running around without my shoes or eyeglasses. I pointed to the insect, which I couldn't see clearly, and said, "That stung me." The person I was talking to assumed that I didn't know the word "bee" and told me that it was a bee. But actually, I was wondering whether it was a bee, or a wasp, or a hornet, and because I wasn't sure, I didn't name it.

You probably would enjoy the novel "The Telling" by Ursula K. LeGuin. It's a wonderfully thought-provoking exploration of how language, perception, history, culture, and religion can all be interwoven to the point that it becomes very difficult to distinguish one from another.

5:33 PM  
Blogger Zilari said...

If perception is different, then we must completely rethink the way we evaluate and teach people with Autism.

Perception is different. It is wonderful that you realize this. I definitely think that any education / therapy for autistic individuals needs to take into account the fact that the sensory landscape inhabited by the individual in question probably differs drastically from that of a typically-developing person. Even among autistics, this landscape can vary, but there is a pervasive theme of extremes. Things are brighter and louder for some of us, but muted for others. In addition to sensory perspectives, there is also an accompanying cognitive perspective that is quite different when a person has an autistic brain. It affects what we notice, what stimulates us, and what calms us.

I do not know a lot about ABA, but my impression so far is that ABA practitioners should be wary of merely "training" a child not to react in his or her particular ways to things, and of using fear as a teaching tool. I know not all practitioners work on this principle, but it makes me very uneasy when I hear about simply "training" children out of certain behaviors without examining what causes the behaviors in the first place. I could presumably be trained not to cover my ears at noises that hurt me, but this would not mean the pain wasn't there.

10:05 PM  
Blogger Kristina Chew said...

Indeed, Charlie does see patterns in the world that I would never notice, and these have opened new ways of seeing things and of understanding. The trick is to see when he is so caught in his sense of things that the only way he gets out is to hit his head on the floor. That's when it becomes--if it is not too late--necessary to teach other skills, such as speech.

12:25 AM  
Blogger SquareGirl said...

Intuition is somthing that I find that many people diagnosed with autism have a lot of...

Zilari, I agree with you about ABA...I am an ABA consultant, yet think it needs to not be about "training"...I have trouble convincing some people of this, due to all that they have read...but I believe that ABA in it's truest sens can stifle many children...

12:28 AM  
Blogger Estee Klar-Wolfond said...

You sound like a good teacher. I wish we could avoid terms and boxes, and create an awareness that good teachers have knowledge of many modalities, but cull from a variety, and adapt, based on the needs of the child. Further, a good teacher is one who really understands the child and finds what drives and empassions them -- autistic or not.

9:12 AM  
Blogger SquareGirl said...

Estee, I agree...that is actual a personal agenda of mine, but convincing people it is about understanding each child as an individual and not box in a certain modality is a lot harder to do than teaching children with a diagnosis of autism...I haven't given up though!

4:48 PM  
Blogger Estee Klar-Wolfond said...

This is great, Squaregirl. I feel the "paradigm" is shifting...

I've been thinking a lot about little things like toilet training -- in terms of developmental "timelines" -- those ascribed and those that are real -- how important it is to recognize intelligence and how it can not be measured by the same milestones and how this affects schooling...

Old ways of thinking have no place in the world of autism.


8:35 AM  

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