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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, April 07, 2006

 

Week-End Thought that Could Change the World

Let’s end the week with a thought:

If we base our teaching methods on human deficit, whose intention are we serving?Conversely, if we teach based on a human’s ability, what is possible?

In recent ramblings about how to teach an autistic child, I’ve come to this conclusion. It is a shift in thinking, as it requires us to think about human difference and disability in the opposite direction.

Autism and other people with varying degrees of disability all have something. As human beings, we all have spirit. We all have inner lives. We all have desires. To assume that even the most disabled person does not have these feelings is to assume they are not human at all. And we all know this is false.

A doctor asked a clinician I know the other day, “do autistic people form attachments?” When she told me this, I gave my little laugh of disgust. It is alarming how pervasive these thoughts are about autistic children and adults.

I’ve been reading some research papers, which discredit Cohen’s mind-blindness theories that have done a lot more harm than good. Dr. Paul Mottron has discredited many notions about cognitive delays in autism, and deficits in face-processing ability. There is a lot to still discredit publicly. It is going to happen, I assure you.

In the meantime, as I prepare for school meetings and think constantly how best to teach my child the skills that he is good at, which he will be able to excel in, which will bridge the easier to the more difficult, I think about every human right to BE HUMAN which means, to dream, to express, to belong and to choose. Quality of life for people who are severely disabled means not just providing for daily physical care, it means coveting the human spirit and enabling it to express itself through whatever means possible.

I ask you: think about what is possible this weekend. Think about what is present in your child rather than what is missing. Think about struggle as a rite of passage in life itself.

Only good can come of it.

17 Comments:

Blogger Jannalou said...

Success breeds success, as Suzuki would say.

If you focus on the strengths, then those get built up and the deficits will also begin to build, as well.

I have trouble speaking out my emotions sometimes, but I can almost always explain myself in writing. I'm working on the talking thing... but in the meantime, I just tell people that if I can't say it, I can usually write it, and they need to be patient in the meantime.

Sometimes, of course, it's necessary to focus on a weakness.

I go to physiotherapy every two weeks because I have severe tendonitis in both arms. We are focusing on my weaknesses in this instance, but the bonus is... building up the strength of my muscles will help to protect my nerves, which is important. And in the end, I'll have the muscle strength to make up for my low muscle tone. (Last time we added core strengthening exercises to the arm/back strengthening exercises.)

1:03 PM  
Blogger Estee Klar-Wolfond said...

Work is a given in life for all of us.

2:17 PM  
Blogger Rachel_W said...

Hi Estee,
Rachel Walters is just checking out your fantastic site-my mom was raving about it and what a perfect time to check it out. First I must say, how incredibly frustrating that anonymous person is-you hit him/her hard just the way they should have been. Second, I commend you on your fantastic and raw outlook on the life of incredibly adorable Adam, your feelings on autism and just basic education for everyone who has the wool pulled over their eyes. sidenote: for others who are reading this, Ive only met Adam once but from personal experience, a)he is incredible and b)he has a girlfriend-thats me! Anyways, my real purpose for writting this is to inform you, Estee, that I am writting my final essay of university (FINALLY)and you are in it!! To make along story short, my essay documents how media depictions of students with learning disorders are incredibly distorted and we had to include the oppositional view points of that. When I read your site for the first time yesterday, I realized this was the best example to show how real and true everyday struggles of young children with disorders really are. You are contributing to truth, identification and the reality of living with someone with a disability really is. Forewarning, Im using disability as a blanketed term but Ive been using specific examples from literature ie. aphasia and memory disorders, handicapps as of course ADHD. So thank you Estee, your site will be cited in my essay, feel free to ask to read it when Im finished-it will be handed in tuesday at midnight.
-Rachel Walters

2:23 PM  
Blogger Kristina Chew said...

We teach Charlie in ways (ABA) particularly set up to address what he does not know by starting from his strengths and building in a love of learning not foreign to any teacher. While this teaching may look rather different from my Latin and Greek classrooms, the technique and the work are the same.

2:47 PM  
Blogger Estee Klar-Wolfond said...

Hey Rachel,

Good to hear from a familiar voice on my site!! Thanks for your kind words.

Apparently a Dalhousie University class reviewed my site as well. So it's good to know that there are others considering alternate points of view.

In terms of alternate views, I HIGHLY recommend, if you are interested, looking at Disability Studies. I've got one particularly good book cited on the right margin you can buy from amazon: Quality of Life and Human Difference.

I'm sure you'll find many others on your own and I would be interested in what you do find.

I'd love to read your paper. You know my number!! ;0)

2:51 PM  
Blogger Estee Klar-Wolfond said...

Kristina,

I would beg to differ about love of learning and teachers. I've unfortunately encountered many who do not foster a love of learning.

I'm glad ABA works for you and many others. It is not, however, the only teaching method, nor does it suit every person with autism.

2:53 PM  
Anonymous Camille said...

Estee,

Forgive my pedanticness... I am one of the WORST for forgetting people's names, and mixing them up...
but it's Laurent Mottron.

I love his work. He's such a nice man. If only the US had someone as deep into autism research and as brilliant and ethical and kind as Mottron. Gernsbacher is as ethical and kind, but she's not as deep into autism research as he is, or maybe not as well known in autism research...

6:31 PM  
Blogger Kristina Chew said...

I would welcome you to my classroom!

7:16 PM  
Blogger SquareGirl said...

As I like to say: Feed it (thoughts, ideas, love, etc.) and it grows. I remind myself when I am looking at deficits, that what I focus on will grow...I ask all the parents I work with to create a gratitude journal in which they are only allowed to write all of the good things their child does...only positive impressions are allowed in the journal...it is amazing to see the effects on the parents and the child!

And Kristina, I would take you up on that offer!

10:32 PM  
Anonymous Bonnie Ventura said...

Estee, have you seen the web page Special Education and the Concept of Neurodiversity?

It makes a similar point about the need to get away from "deficit" language.

7:22 AM  
Blogger Estee Klar-Wolfond said...

Kristina,

Me too (on Squaregirl's comment). I remember how all too often, I had many "bad" teachers. What I remember more, are the good ones. The one's who nurtured me and inspired me.

11:17 AM  
Anonymous zilari said...

I would wager that a teacher is not a teacher unless they are actually teaching. No matter what they are called. I've had teachers that taught, and people called teachers that did nothing of the sort.

One of the points I came to think about last night, as I was writing my own blog entry on the massive confusion surrounding ABA (which most certainly includes my own confusion!), was that the education of autistic people should perhaps be re-emphasized as education, not "treatment" or "interventions" or referred to by clinical acronyms. It is difficult to really teach someone, I think, when one starts from the premise that there is something wrong with the student.

I think it's perfectly possible to acknowledge differences, accept that autism is a real phenomenon, and still teach without medicalization of a student's learning style, whatever that may be.

12:03 PM  
Blogger Jannalou said...

I think it's perfectly possible to acknowledge differences, accept that autism is a real phenomenon, and still teach without medicalization of a student's learning style, whatever that may be.

That is part of why I don't tell people that "I have a respite shift tomorrow"... I say that "I get to hang out with one of my kids tomorrow".

My friends all know what that means.

As for teachers... I've had a few excellent ones. My favourites were the ones who made me think, who didn't just accept the things I did as they were but challenged me to dig deeper.

In grade five, that was my homeroom teacher. He encouraged my creativity and gave my parents information about a summer camp for creative kids. My first time at a summer camp was that year, and it was wonderful. I think I appreciated being encouraged to develop my creative talents more than anything else.

In high school, I had the same English teacher in grades 9, 10, and 11. He didn't just take what I wrote and say how wonderful it was, like all my past teachers had done. He actually pointed out logical fallacies, noted the bits that were good, and gave suggestions on how to improve other parts.

And when I was doing my music degree, I had an amazing second year theory teacher. He also taught me orchestration, counterpoint, and was my prof for third year composition. Counterpoint was the first class of the day, and he would come in and tell us we could ask him ten questions. Anything we wanted to know, didn't have to be related to the class; the only question that was off-limits was "what's the meaning of life?" He punned constantly - the sense of humour there was definitely at least as warped (and sarcastic) as my own. The kind of man you learned from in the course of everyday conversation, not just in the classroom.

*pondering writing own blog entry about teaching*

5:33 PM  
Blogger Estee Klar-Wolfond said...

Zilari and Jannalou,

YES YES YES YES YES!!! You got it! Zilari you just said it sooo well: we should say teach, not treat kids with autism.

There is a huge difference from where one starts with these basic premise.

I went to the MukiBaum gala last night and it was amazing. Dr. Baum sits on my CAAN board. I was thinking about this all night -- she uses no behavioural approaches in her schools at all. Kids with severe and complex disabilities come to her -- aggressive, unable to speak. Everyone of them becomes verbal by the time they leave. They calm down, they are happy and they learn to be productive.

That says it all in terms of disproof of "ABA is the only scientifically proven therapy..." It certainly is not. Muki Baum is a model for us all to look to, as I get many a parent with a child with more "severe" autism quite confused about these notions of acceptance, ability and teaching.

We can't fail if we look at humans, all beings, as whole beings. We begin to service them properly, we begin to build success instead of failure for the person. And that means everything.

9:06 AM  
Blogger so much for mercury said...

Great entry, Estee. I just finished my own blog entry, which was a more personal summation of my son's progress this past month, and then came over here and said "doh!" That's what I meant to say! I'm about 1/3 the way into Greenspan's Floortime book, and am at the point where he instructs how to figure out your child's strengths and weaknesses, and I realized the same thing you have hit on so elequently here. My son's best progresss so far occurred only when we gave him methods that worked with his visual strengths - namely PECS and video - and stopped the unproductive methods we were using that were aimed simply at his weaknesses.

10:37 PM  
Blogger Estee Klar-Wolfond said...

Adam has also done some things that surprised me this weekend, which is why you can't broach everything with "behavioural" intervention. The last two weeks, his tantrumming went way up. All of a sudden, with patience and understanding that a large part of this was frustration, it has gone way down. Further, Adam is talking again. I can ask him where we are going, and he can answer me. He is letting me know that he is AWARE. I always knew that Adam was "with it," but it is rather affirming that he can use his words (without prompts), to tell me where we're off to.

This seems to be congruent with his use of my blackberry and computer ....he is typing all kinds of words on it. All I do for now, is to put his words into a story, in a context.

Anyway, it's been a weekend on the upswing.

7:04 AM  
Blogger Anne said...

Estee, I've enjoyed reading your excellent blog.

Zilari, thanks for making the point about education, as opposed to treatment/intervention, so clearly. This is a point that I find myself wanting to make over and over again.

4:20 PM  

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