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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

Saturday, June 17, 2006


In Search of a Democratic Education

How often do we hear that teachers or principals of schools cannot make changes in the classroom “just for one student?” Education has been on my mind a lot lately. As I struggle to find a school, not an “autism school,” but just a great school for Adam, I am floored by the static, undemocratic set up of schools today. Endemic to this autism trend: autism as a disruptive behaviour instead of a perceptual and cognitive difference that effects behaviour – much like the deaf community and their perceived “aberrant” behaviour thirty and more years ago, Adam and other autistic kids like him are getting unjustifiably turned away.

If a school is interested in him, it seems to be with trepidation – Adam must fit into the school’s culture, completely forgetting that at least of Canadian culture, it is one of purported tolerance and multiculturalism. Adapting programs seems to be rather difficult – some schools try to define “adaptive” within an already rigid curricula and format. Of course, other than nursery school and soon Junior Kindergarten at the lovely inclusive Play and Learn in Toronto run by Nancy Searle and Karen Ward of Bloorview MacMillan, I find little truly inclusive philosophy or practice akin to Nancy’s. Nancy will speak about the system currently set up where parents can advocate and get the needs met for their children in Canada in October in Toronto. I urge parents to mark in on their calendars.

I am studying successful models in education for autistic people. Both inclusive and autism-specific models. I’m trying to be very selective in what we choose for the Resource Page in The Autism Acceptance Project website, but when I find interesting school models, like the Creative Growth Project in Nottingham – where even mathematics is taught through art and sensory explorations – believe me I’ll find out more and put it on this blog.

Michelle Dawson has made an important point with me as well: “how can you know how to educate,” she said to me in a phone conversation, “if you don’t understand the cognitive ability in autism?” It is a rhetorical question that we all better think about. This is why this research by people such as Michelle, Laurent Mottron and Morton Ann Gernsbacher are vitally important in this process.

As we learn about ability in autism, we are learning how to teach. Of course, I hope I need not have to re-mention that if we look at autism as deficit, we won’t be teaching successfully. Just in case, I said it again.

Paula Kluth mentions democracy in the classroom and that has got me thinking just how little it exists in all of our schools and teaching methodologies today. Democracy means turning the teaching, the curriculum design over to the students. It means using students as teachers, and teachers as guides. It also means that students can teach teachers. Kluth begins to define the rigorous exercise of inclusive education:

“In a study conducted by Udvari-Solner and Keyes, administrators who were identified as leaders of inclusive education claimed that they needed to have courage to “relentlessly pose the difficult, the contrary, the controversial, and the seemingly unanswerable questions.” (p. 24 Kluth). “In addition, these principals and central office administrators stressed the importance of expressing their own personal values.” (ibid).

Kluth quotes principal Sue Abplanalp about openness and honesty in forming an inclusive school community:

“I guess the most important thing I can do is to be an advocate by voicing my opinion, modeling, and letting teachers know about best practices, by continuing to ask the same question when I’m not sure about what to do: is this in the best interest of the child.” I have a desire to be an advocate, for equality, regardless of age, disability, race, religion, sexual orientation, ability, gender and anything else I forgot. It’s part of my vision for justice.” (Kluth, p. 25)

Dawson, however, states that opinion in autism is not enough. Her quest, because of this fractionalized autism community of autism “interpreters” [my word] – parents, educators, politicians, is to unveil cognitive ability in autism through accurate science. Accuracy, in terms of semantic representation of this community, by people who have defined themselves, as well as in science – much of which out there is inaccurate, supported by special interests, and not peer-reviewed – is of utmost importance when understanding autistic people.

In terms of education, as a mother, I believe that the democratic process is the missing link. Democracy means accepting everyone. It means adapting curricula. It also means, that when all children stay together when they’re young, they will understand and support one another in adulthood. Fostering a tolerant society begins early.

Also, the term “therapy” is dangerous. It implies remediation and is a popular psychological and clinical term. It does not necessarily honour the different perceptual learning that autistic people not only view often as a challenge, but more often than not, their strength. And what our we doing? Quashing the very strength that defines our autistic children? I do one-to-one instruction with Adam. I call it instruction, tutoring, education. I no longer refer to him as an “inappropriate behavior” and do not spend the hours teaching him how to “behave appropriately.” I used to be uncomfortable with that idea, torn between old-world ABA thinking and my current practices. I am so comfortable with this today as Adam continues to learn and grow.

Nearly three years now and I’ve finally learned, with the help of many autistic adults who I continue to interview and befriend, that teaching Adam, like many autistic kids, has been a paradox for ME. It is a daily quest to strike a balance between boundary making, and following his obsessions and passions. It is a quest to put myself in check, to be his parent, to teach him, but to also learn about him, respect his learning style and to find the ways in which he learns. It is a quest to not just turn his unique way of accessing language to “make it functional,” but to find a way that is functional for him. In a way, it is a meeting of his world and my world, the world-at-large, and to live together within it.

Through this autism paradox, I have learned the delight of life itself – the delight of having to think, to find, to never accept the black and the white, and to never accept the status quo. It is an effort for sure, but it is one that is expansive and most definitely worthwhile.

Congratulations!! You’ve given birth to an awesome autistic child. Do you know how lucky you are?


Blogger Joseph said...

You’ve given birth to an awesome autistic child. Do you know how lucky you are?

My wife did, but thanks :)

I do try to tell my son this every chance I get.

10:24 AM  
Blogger Kristina Chew said...

It's our (parents') task to look and listen at our children, to discern what they need based on where they are, not so much on what we might believe in. Children change us, indeed.

11:00 AM  
Anonymous Anonymous said...

Liz here from I Speak of Dreams. Estee, I've sent on your post to John Wills Lloyd, who writes on Special Education at several blogs

I think that even though he's American and you're Canadian, this is a fruitful area for discussion.

12:46 PM  
Blogger Sam I Am said...

I agree with what you are trying to say, and I will reply only from the perspective of the American Public Education (I don't always understand the Canadian system, sorry)system of which I have been an educator the last 15 years.

In America, because we have local, state and national teaching standards/benchmarks that we must meet with every child, as well as state tests that we must have our students pass, or face our schools being closed, no matter where they are located (No Child Left Behind), good teachers teach from a model of theoretically having an IEP (Individual Education Plan) for each child. Good teachers here are trained to teach to all children's learning modes and multiple intelligences.

But, in a democracy, comes the problem of measuring whether all children are learning what they deserve to learn and are entitled to learn. And hence we have lovely things like standardized testing that teaches to only one mode of performance. Teachers in America are scrutinized and measured on the performance their students achieve on these tests. Democracy can help and hurt.

I can't tell you how many good teachers out there are finding themselves teaching to a test, instead of a student. That perhaps the authentic assessments we can measure their learning on should be trusted by what the teacher reports about the student, not what the districts, states report of tests to a national level. I hope Canada does not face these problems.

So, in support of educators in America, they want to individualize EVERY childs learning, not just those who require IEP's because of their disability......but how, with ever increasing requirements?

EVERY CHILD, no matter who they are, or what they have been diagnosed with, where they live, what ethnicity, what their financial means, or what sexual orientation deserves the right to an education that meets their own individual needs. do we do that? In America, I say to parents to become active politically whether you hate politics or not. It is our right, it is our voice that needs to be heard for ALL children. Thanks for making us think with your post today!

1:43 PM  
Blogger Fore Sam said...

It doesn't matter how good teachers are. You can not teach a child with mercury in his brain anything until you remove the mercury.
Teachers should demand that doctors do their jobs instead of pawning this problem off on teachers who are helpless in this situation. All teachers accomplish is to waste lots of money for a problem they have no chance of solving.

7:01 PM  
Blogger r.b. said...


I call it the curse of the almighty gradebook, in my case..."We" hated Ben going to school for years because it was so much work for both of us. (He called it torture!) We never touched a book in the summer.

Love this subject, and look forward to THE Project. Thanks for putting joy and autism together in a title, too.

8:55 PM  
Anonymous Fanny said...

My friend's beautiful son is 13 and has autism.
He cannot read, write or talk. He bites himself and flops around , running naked most days.He is a much loved boy.His parents see the best in him. He smears his feces, poops in swimming pools, & shrieks all day. This family is "broke" and "broken" from all the "needs" of their adored son.

He isn't in a group home and he's not on drugs because his parents will do what is necessary to care for him.They love him.

I am wondering how you will feel if your dear little boy turns out be like that much loved boy.A teenager still standing in a sandbox stimming next to toddlers at the park.Or a 200 pound teen who still screams in a store when he doesn't get what he wants.

Maybe the idea of "therapy" will look better then?
Whether you call it instruction or therapy , you still have a team of therapists working with your sweet boy, your blog mentions speech and OT too. Sounds like you aren't trying to keep him just the way he is. Lets be honest at least.


5:42 AM  
Blogger Estee said...


I've met many people who have "behaved" in the way you describe. For instance at Mukibaum, many "severely autistic" (adolescents especially) came with aggressive, were non-verbal...when their space was respected, they were approached slowly and they began to feel safe with their "therapists" or teachers -- whatever you want to call them -- their aggression desisted and began to use some words. I love one of Donna William's pieces of art called "The Therapists." It shows shadowy figures pulling and tugging at the autistic person.

I find therapy is this constant pull to change a behaviour of a child -- a behaviour that some parents and society-at-large fears because it doesn't understand. In this situation, when a person tries to change another, it is met with resistance.

There is a lesson in stories where in cases, it seems where autistic people are more "defensive," that this type of approach is important.

Fanny, Adam does a number of things that teach him many things, not just one thing.I have gone through the process of many other parents to this point of acceptance. Call it what you want, but I am very pleased with the person he is. Acceptance is not standing idle, and it's not changing an apple into an orange, either. Acceptance is accepting the person Adam is, and teaching him like any other child. Teaching him specifically is a paradox, a fine line between setting boundaries and letting him explore freely. It is an art, really. It can't be operationalized or put into writing. You just have to see it, feel it.

Every person has learning challenges. Some have sequencing difficulties. Some are dyslexic and have to learn to read a different way. Some are deaf and have to learn to sign and lip read. Some have multiple "disabilities" and have to learn to adapt -- like Stephen Hawking.

But disability has no bearing on the person, on spirit, on human value.

Autism, like the deaf and dyslexic communities, needs to be understood for its abilities and strengths, and autistic people need to be listened to. Then, we can understand behaviour. I often hear from people who get angry with me for writing the way I do, whose children are "self-injurous," so I've gone to autistic people to explain this behaviour. I do not speculate why they do it. I like to learn it from them. The Autism Acceptance Project gives all of us opportunities to listen and learn to autistic people.

I don't "treat" Adam's behaviours. My journey with Adam has taken me this far. I don't care about them in as much as they don't bother me -- they are part of him. I care more that he continues to learn, to adapt, and while I expect he will do many things with his life, I also don't expect him to be just like me. Paradox indeed. Ineffable perhaps.

9:06 AM  
Blogger Fore Sam said...

Why don't you want to learn anything from autistic people who are being helped by removing the poison that gave them autism?
It sounds to me like you're trying to justify your existence and obsolete notions about how to treat autism. When we cure all these kids of mercury poisoning, you'll be out of business. You are perpetuating the sadism that keeps kids autistic by ignoring the fact that we now have a cure. Teachers can be useful but they can't cure a child.

10:20 AM  
Blogger Lisa/Jedi said...

B's school, although not a "special ed" school, does a fabulous job of the democratic education you are talking about. It's a private alternative education school that truly combines the best of learning & teaching theory with tailoring the educational process to individual children- not just to their "needs" but to their interests. They juggle special ed services & providers from quite a few local school districts quite elegantly & do a great job assisting parents in their advocacy for their children. Here's the web site if you're interested:

2:05 PM  
Blogger Estee Klar-Wolfond said...

Hi fellow writers and readers --

Just realized how poorly written my last comment was...interrupted by Father's Day phone calls, a cold and a little one tugging on my leg. Sorry. Hope you get the gist of my bad grammar in that last comment!!

7:48 PM  
Blogger Estee Klar-Wolfond said...

Thanks all for those links!!

7:50 PM  

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