Saturday, May 23, 2009

The Language of Therapy

Therapy is a pathway from our world to the world. People need to understand it is a dangerous hike, one that threatens our sense of personhood. Entering the world
required a death of the physical self for me. Being in the world overloaded my senses to the point that I did not feel myself as a person – physically I had no sense of self. I took a dive into the world only to find I did not exist in it. Mine was a mind only existence. I could not feel to know form. I could not feel to identify self. I was a quadriplegic who moved.

Therapy is designed with movement as response. It is conceived and practiced from the standpoint of normal function. Ours is not normal function. We are dolphins in a gilled world. To treat us as fish denies us the air we need to breath. Like the blind and deaf communication with us requires the use of different language, one that is specific to the individual .

Autism is a communicative sense disorder; not just communication with the outside world, but our bodies as to ourselves. Our senses are what produce our world of meaningful experiences. If you do not see it, you are blind to it. If see or hear it differently, that is your reality. My senses constantly miscommunicate to me. To fail to process, to process too much or too little, to process wrong, it is all communication error.

For me, my physical reality told me I did not exist. For others is may be their emotional reality that differs. For still others their reality may actually surpass yours, via hypersensitivities you do not have. Which senses are involved? How they are distorted – it is an individual thing. Sensory processing dictates a child’s reality. The child’s reality dictates which direction treatment must take, the language you need to use to translate your world to the child.

Too hard you say? It is not too hard. Experts know the functions of the senses. They can read the symptomology of reaction. Just no one has tried to put it all together yet. Instead skills are dissected into task components absent their sensory pieces.

I will give you an example. My eyes can only process the whole, or pieces of the whole at once. Seeing parts within the context of the whole is lost on me. Size is a relative measure. I know big. I know small. But relative size has always escaped me. I am blind to it. Am I stupid for it? I do not think so. To understand something and to do it is often an entirely different thing. I have a damaged body, not a damaged mind. Yet I will test retarded every time. Some times the failure is as much in how we test knowledge as in how we teach it.

If you test for something other than what you want to test for, the test is invalid. Would you give a visual test of size to a blind man? No. Yet I am tested this way all the time.
Similarly, you teach for other than what you want learned all the time. If you looked and tested for what was actually learned, rather than for whether we learned what was wanted, the child’s actual learning process would reveal itself. You could teach a child how he learns; you could teach him how to learn; you could work around his individual sensory deficits so he could learn.

As a child it was known that I had a poor sense of body awareness. Yet no one paid attention to this. I was constantly asked to do what proved an impossibility for me. You could have taught me differently. You could have tested me differently. You did neither. Neither did you try to understand the “why?” of me. Consequently you tortured me with your teaching methods. To not understand my own movement was bad enough. To not understand others made me want to escape the world altogether.

Your teaching games look very different when seen through my eyes. It was not about learning for me.

My experience – “kick chair,” you say. I hear a sound.
“Touch nose,” you say. What? I see a blur of movement.
You move me now to touch my nose. Where is it? I feel the touch, but don’t know where I am being touched.
I can see to find your nose. “No,” you say.
On and on it goes. I start having nightmares of being touched, where I don’t know.

You police me to do and fail again and again. My anxiety is screaming. Each doing asks me to say no to being. Each exercise deadens me more and more to wanting to be part of the world. You bully us into conformance, creating puppets where fragile souls exist.

How do we lose our identity to you? It happens in different ways. We fight our own sensory systems; we give up our right to feel in order to respond to your commands. The rules become our prison – not just our rules, but your rules too. Policing us, you destroy our individuality. Policing us you train helplessness. Our protests go ignored or punished.
To respond becomes a “yes” only exercise, where doing the action asked denies self.

Doing pitted me against the world. I had close calls of subordinating myself, but the anger at the injustice of it always brought me back to fight. Polite teachers were really dictators in disguise. Where I lacked a physical identity, another identity formed – anger and anxiety became my identity and definition of self in the world. It filled the gap, however poorly, until my physical form could be felt, a better identity and purpose could be found.

Even now to think on it floods me with anger. To teach a typical child like this – you would consider it torture or abuse. Am I any less a child? But anger is not the answer. Teaching others awareness is the healing action. Teaching others that autists are people first is the responsible response. It is not the teaching systems that need to be addressed; it is the people operating them. They need to be applied in appropriate cases only. You need to understand why you are applying them and when they fail, why they did not work.

You need
to recognize which teaching system speaks to whom and which doesn’t. TEEACH, a system that employs visual cues as information supplement is of tremendous value to the single modal visual child, but of more limited use to the auditory or tactile learner. My Mom says TEEACH’s greatest value is as an assessment tool. She learned much about how I processed my environment using TEEACH.

The Picture Exchange Communication System (PECS) , which uses pictures and objects in place of words to communicate, is good but often fraught with error in its application. How many stick it on a board and thereby undermine its entire purpose as “initiative” communication? How often is a child’s lack of visual processing misinterpreted as a lack of understanding of communicative intent? I knew to ask, but my vision blinded me to what I was asking for. For others it may be their lack of understanding of symbolism that blinds them. Therapies fail for many different reasons, but the reasons are determinable.

Multiple-cue remediation training helped me to succeed. It developed my sensory processing, taught me to look to the previously ignored piece of information; to attend to multiple things at once. I may be taken by the beauty of the colors – where your focus is on the form. Mom says it is like Escher’s pictures. From Mom I know two pictures exist simultaneously in one, but the ability to distinguish them is still lacking for me. And so conceptualization expands, at least in theory recognition. Where our systems may be limited, our minds are not.

ABA/ Lovaas just provides content for the conceptual autist, but it is sheer torture for the single modal child that I was.

It is not the content but how it is conveyed that forms the problem. Bombardment with meaningless stimuli teaches other lessons best not learned. Anger and anxiety are just two. Robbing a child of their personhood, creating a puppet as replacement for the fragile soul is the worst. How ironic that you do not see the failure within your success. I would far prefer to see brief moments shared than functional absence on the part of a child.

Initiating is difficult for all autists, regardless the underlying reason. It is these failures to initiate that you label as our “disconnectedness”. But to ask us to perform in the absence of soul, makes us no more connected to your world. It actually teaches the alternative of your end goal, where progress leaves our true personhood behind.

Understand, I am not against behavior therapy. You can do behavior therapy with out robbing the child of their soul. It is the difference between communication and control.
Treatment always needs to be aimed at communication and that requires speaking the same language as the child.

Application of treatment without differentiation is unethical. Autists are entitled to respectful teaching. What is respectful is a product of the autist’s limitations of processing, not a teacher’s sense of ethics. Therapy is a pathway from our world to the world, but unless you hike with proper gear there will be casualties.

4 comments:

  1. What a nice profound blog post!

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  2. I like what you say! It is hard for those who are not autistic to understand the sensory problems of us who are. Also, some of what you say is in Donna Willilams books. She talks about being mono-channel. And since I know Donna personally, we've talked about these things at length.

    Xenia Grant

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  3. Princess ClaudiaMay 12, 2010 at 9:16 AM

    Hi

    I teach college, and am interested in learning styles. I am also on the spectrum, and have memories that go back to well before I could speak (details later). In non-technical terms, how do you learn the best?

    I remember hearing about Lovaas' work as a girl, and thinking it was horrible. I agree with you completely that this is torture- and that nobody should teach any child in this manner. The idea of administering any kind of teaching-by-punishment seems barbaric to me, when children really want to learn, as long as they can understand the instructions.

    I am so glad that you have written this, and hope I will see you on more websites.

    Claudia

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  4. Bravo! This is very much a breath of fresh air. :-)

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