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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

Sunday, January 22, 2006


Body and Mind

I think about the times when I live just in my head -- I can sit for days and read, and write -- making unconscious trips to the kitchen for yet another coffee with too much sugar. A month or two of this can pass until I decide it might be a good idea to reconnect with my body in a yoga class or two. While goading my limbs to "enter a pose" just a little further between grunts I realize my body is trying to connect with my mind -- trying to just let go in blissful symbiosis. I am shocked at the huge disconnect between my body and mind and wonder where I've been.

I try to give this feeble analogy in an attempt to understand what it might feel like for those with autism -- where body awareness is not altogether intact. I struggle to understand a lack of body awareness that otherwise comes so naturally to me.

Tito Mukhopadhyay states that no one autistic person can follow a command if they are not aware that they have a body. In autism, this disconnect seems to be magnified -- of "not knowing where my knee is, if I even have a knee, when my instructor demands `touch your knee.'" I considered his responses to Biklen's questions and reflected upon Adam's life:

"Am I made of thoughts or am I made of my body? I usually experience either, one at a time. I had to shut my eyes on the road because the whole road seemed to become so alive, although my logic told me that it could not be so. Only when my mother took me to some other lane, could I open my eyes...I had to learn about my body, because I could not feel the pain, or realize it, till I was taught. So without knowing anything about the body, how could I apply parts to do different activities, which people do? So when someone asks you to do something manually, I get clumsy. You have to map yourself, map the part of the body you are going to use and time it up, because someone is waiting for you to complete the task. You know that your intelligence or stupidity would get measured by that performance of yours." (p.122 Biklen)

I think of all the times Adam squints his eyes. I have always called him a "visual" child, he can read, decode, and his primary stims (self-stimulatory behaviour) are visual ones. But now I consider that he is also shutting his eyes to feel the world, for to see it is just too much information, thereby making the world too overwhelming to feel and comprehend. I also consider all those standarized testing situations that have evaluated Adam's performance without considering the difficulty of body awareness.

"Games can get awfully puzzling. Exercising can work better because you are sure what you are supposed to do. Limited boundaries of movement can save a lot of strain."

I think of all the activities that should be close-ended and structured so that Adam can learn to become competent, and later, more fluid in other settings. The speed of play in a children's playground is still too much for Adam. He observes, I feel he is trying to join, but he doesn't know HOW to join or what to do. If the game was close-ended and more structured, we could teach Adam how to join in play and he could feel more competent and happy with himself, thus enjoying the experience.

On the association of Mental Retardation and Autism:

"It is the most disgraceful label which the term Autism is associated with. Yes, some areas remain less developed because of a lack of associating the mind with the body and environment. I had been labeled as mentally retarded when I had my first encounter with the psychologist. I was three years old then. I was not able to apply my knowledge although I could understand perfectly what was being asked....I do not blame the psychologist. Seeing is believing [bold mine]. They should begin with the attitude that the client is understanding him and not wonder where to start or what to start. Start with anything. And grow around that anything. Talk with an easy tone because the client is not hearing impaired. Trust that the client is capable of understanding. And then `Carry on.'"

I think of all the myths about autism as a parent I try to diffuse -- the myth that 2/3 of the autistic population is mentally retarded, the myth of low functioning autism and high functioning autism -- the view that LFA renders that person "less" human or intelligent or for that matter, capable. It really just is about the amount of obstacles we have to learning -- some have more, some have less.

"It took me many years to realize that I have a body. I think that is not becuase of my preoccupation with other thoughts. I was totally aware of sounds and colours, which my senses picked up for me...Even this day sometimes I feel that I am walking without legs...Many Autistic people need to be helped because of this reason. How can they perform a task using hands if they just cannot feel them? And without any feeling how should they have control over them? I grew up and started my mirror gazing, I became more aware of my looks and size. I had a favourite bed sheet which I loved to wrap around my body so that I could enjoy it....When I learnt that a swing was not anything which could kill you, I started using it a great deal. Half my school hours are spent on the swing. I enjoy climbing up a staircase also becuase the gravity acts on my body as I apply myself against it. Escalators are wonderful as I can be sure of getting the feeling of my body gradually. At home a little rocking and spinning also helps. Thank god mother doesn't stop me." (p.138)

This tells me the importance of Occupational Therapy in Adam's life -- his need to experience and feel his body as an essential component to completing the simplest tasks to problem solving. It tells us that spinning isn't a "behaviour" that needs to be "extinguished," but an essential need for the person autistic to KNOW themselves, to feel alive. Providing for this makes the world easier to understand and easier to join. The goal for Adam is...SELF AWARENESS.

"To think about it, I recall that I learnt every skill through touch method. I have a problem imitating any movement by looking at people performing or mapping my body accordingly to the instructions given to me...I am stressing on how to do and not what to do because no one should have the impression that I did not know what to do. Different skills need different time to practise depending on the feeling of awareness of that part of the body. Sometimes I feel my legs better than the hands. But I needed my mother's help to learn the tricycle. She had to manually push my legs because I could not do the movement. It needed some practise before I could ride it independently." (p.138)

I am always doing this with Adam. I am pushing and squeezing his legs so he can FEEL them -- in hopes that he will eventually correlate the feeling to the action in his own mind. He has peddeled independently a few times now...but I expect it to be a few more months because it's not something we practise intensively. I also believe that we should teach in the easiest possible manner for the learner -- we want learning to be as fluid as possible. Adam is a kinesthetic learner -- learning by doing. If he needs me to nudge him from behind, some hand over hand -- whatever it takes to get him started and eventually independent, is the right way to teach.

"Life can become very boring for an Autistic person if he does not learn how to play -- touch is always a big help when an activity is new for me. Only through practise and gradual fading of the touch the activity can be done independently."

It's what I always tell people...Autism is not NOT KNOWING, it is not knowing HOW. We teach Adam HOW to do everything. A lot of times, he can generalize himself afterwards. He is lucky in this regard.

"I could not point at objects for many reasons. The most important reason is that I had very little sensation of my body.So the technique of moving my right handed needed control over the ball and socket joint of the shoulder and then hinge joint of my elbow and finally fold the other fingers and keep the point finger out...It is an essential skill because I can go to a shop [now] and point out exactly what I want. I can point to my forehead and show the doctor exactly where I had got the knock because he should not end up treating my nose." (p.133)

Although Adam is verbal, this is still an important skills for intention. "Show me" skills are important -- even if he can't find the word. He is okay at pointing to concrete objects close up. We have to work on those things that are further away. I like how Tito describes all the steps that one simple point requires. It illuminates the laborious steps to be learned for an Autistic person.

"Exposure to variations be it clothes or food, place or timetable, help us to, if not love, but to tolerate and understand our role in situations better." (p. 141)

I've mentioned it before in this blog. If this is one thing we learned early if even by default, is to expose Adam to EVERYTHING. His life, aside from his special training at home, is no different than any other child's. He goes to regular school, he has a playgroup, he goes to the Ice Capades, children's performances, the art gallery, and travels on planes. He is flexible and enjoys the novelty.

"Many Autistic people try to cut away the various inputs of sounds by producing their own convenient sounds so that the other sounds get to the background and the sound which he is making gets all the attention and concentration. He should not get away with that because it would lead him to nowhere other than get entangled in its own intoxicating effect leading him to get deeper trapped in the obesessive nature of that sound....That can make his life miserable."

Adam babbles a lot. I use Tito's suggestion intuitively -- of turning on the radio, or changing the environment to bring Adam back to the world. I have to be careful, though. His articulation is sometimes off, and I try to recognize when he's actually trying to say a full sentence. If it's repetitive, I can usually tell that its self-preservation.

"Mother asked me what I would like to do next, or what I shall like to have for dinner...Later in life I had faced similar questions about my likes and preferences. I kept myself prepared by finding a more honest answer before telling somebody that I liked something. I have seen people asking other Autistic people, showing two objects and inquiring whether they would have this or that. And the Autistic person randomly replies this or that. Nobody answers "both," although some may not mind having both. When the prospect of an answer is so narrow and the tendency to escape is more, how could the person grow and organize his reasons? So although it is difficult to face an open question, it should be introduced. Escapism is the doom for any development."

Here I think of the perils of Verbal Behaviour methods. We have stumbled into the same roadblocks with Adam, trying to introduce "choice" questions. Instructors (thankfully not mine -- Adam has a great therapist named Laura) can get so lost and wrapped up in their goal for the lesson (child to make a clear choice from two objects), that they can forget that the child may want neither or both and the lesson hasn't been set up for that possibility. It might be better to enable Adam by using textual and pictoral choice boards, so that he understands that he is free to express himself, rather than just meet an "expectation." We also have to be open to his own responses, the ones we don't expect.

"There are many approaches to a question. `What is this?' is a very rudiemntary approach to communication. When my speech therapist asked me `What is this?' and tried to get an answer out of me by telling me more than half the answer that `this is a _____' he forgot that I had already authored more than a hundred poems by then and two of them were already published. Naturally, I did not like this two-year-old treatment just because he had the advantage of speech. I could have started my answer when he was showing me a picture of the cat like this ---

Call me a cat
Or call me a feline
Call me any name
I shall haunt
Your doors at night
Now, then and again.

That would be an open-ended response to any question rather than restricting the wonderful prospect of answering with a sentence like `this is a ___.' My ego is always important matter to me." (p.136)

Self-awareness, ego, self-mastery, competence. These are the ultimate goals for helping our children. This is the GRAIL. And it is attainable.


Blogger Kristina Chew said...

Indeed, the best teachers/therapsits area always able to vary their goals to where a child is---Mukhopadhyay's writings do give us all a sense of the disconnect between mind and boyd in ASD persons. I have noted this in Charlie's attempts to catch a ball; his eyes see the ball but his brain sends the signal to raise his hands a bit slowly.

And yes, we've been "exposing" him to everything since he was a baby, in particular the busy chaos of the city.

12:52 PM  

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