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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 24, 2006


My Visits with Larry Bissonnette and Jonathan Lerman

1 a : the quality or state of being able; esp : physical, mental, or legal power to perform
b : competence in doing : SKILL
2 : natural aptitude or acquired proficiency
©1997, 1996 Zane Publishing, Inc. All rights reserved.

It is this notion of ability versus disability that has come to mind after meeting with Larry Bissonnette and Jonathan Lerman yesterday in Burlington, Vermont and then Vestal, New York.

I entered Larry’s studio where he was waiting for me – his head cocked a little to one side, as if he was watching me and my camera crew from a better eye. I was so happy to meet him in person, finally, an admirer of his awesome insight and poetic way to describe things. After reading about a person for so long, they become a kind of celebrity – I feel so familiar in his presence, yet am a complete stranger to him. It is an invasion of sorts, being here, meeting him, looking through the hundreds of paintings so neatly organized in his studio. This is Larry’s private space, both his inner and outer worlds.

I climb the narrow stairs of a barn-like structure housing other workshops. It is hot and sticky; the air is thick with dust. As he watched me approach me, I smiled with delight – he leaned in with his forearm, and returned the smile -- his version of a handshake.

I am tentative and try to be delicate and gracious within his space. There is a cameraman with me – Larry likes to be on camera, but we are all quiet, introducing ourselves, meeting Larry’s assistants, letting the minutes determine what is to be said, and how much.

I receive some direction on how the works of art are stored and I ask permission to go through them, Larry standing near the door, drawing arcane lines with his finger through the air, almost like the conductor of an orchestra. “Baby blue door,” he says pointing to the door next to him. “Baby blue door.”

“Does that have a meaning?” I ask Pascal Crevedi-Cheng, Larry’s Facilitated Communication assistant since 1991.

“They are repetitious phrases, a breakdown in communication. They don’t have any specific meaning,” he tells me. I think about the times when my own Adam is scripting, when he puts a phrase into a space or a moment, how it can make sense and then repetitive, like he is enraptured with the sound and the melody of words.

I ask Larry “What is happening for you when you loop your language – when you say Baby Blue Door, for instance. Does it have meaning for you?”

Larry looks at me, and I can tell he acknowledges every word. “Ah!” he says and promptly begins typing, Pascal's index finger and thumb squeezing his shoulder to remind him to keep typing.

“Pale imitation of real feelings,” he writes.

At the studio, and after the introductions, I begin to feel comfortable enough to look through Larry’s work. He is watching me. I ask him if it’s okay to look here and there. Craig, the cameraman turns the camera on watching me, watching Larry, the dialogues that happen at this first meeting among the artifacts of Larry’s mind.

I pick the work for the show, we grab lunch and return to the office where the interview continues. Larry is listening to us talk while we eat, and I ask him what his favorite food is.

“Macdonald’s cheese burgers,” he says, and I chuckle. He shines a big smile and Ryley, my assistant grabs two coupons she happens to have with her for Macdonald’s burgers. Larry reaches for them with delight.

“Do you have a girlfriend?” I ask him.

Larry cowers and blushes. I joke around. “Ah!” I say. “I made you blush!”

He grins.

The laptop computer comes out, the camera is ready. Larry is using a computer program called Write Out Loud, which says the words and sentences he writes. I have not yet asked him a question and he begins to type:

“Least little force of my typing isn’t making sense. Estée ask me your awesome questions.” He is a gracious man.

I have seen many symbols in his work – houses, cars, and crosses. So I ask “What do cars mean for you?”

“Problem knowledge of goings on with interpreting images as symbols is Larry doesn’t paint ever vesting deliberate symbols. It’s all intuition.”

I leave the art. I understand intuition.

Larry is what you call classic autistic. So I ask him outright, “Do you want to be cured of your autism?”

“People who think your disability is a sickness need to be cured of their ignorant attitudes.”

I smile, he smiles, we high-five. We have a moment of understanding and his sense of humor becomes so apparent.

“What do you want people to know about you?” I ask.

“Larry loves McDonalds like people once they stop dieting and only when work that I spend my time on is seen as personally motivated and not derived from autism will I be satisfied.”

I tell him that people will be interested in his art as it is and because of his autism. I am clear and he acknowledges this. “Yes,” he says.

“What do you want parents to know about their autistic children?”

“I am in life until the total realization about the power of communication happens so parent occupied with over-coming problems of disability needs to focus on abilities that are not easily seen.”

So on the note of ability, I have to ask, “What is your greatest strength?”

“Am slacker by nature. Am the personification of practice makes perfect.”

Perfect. Indeed he is.

“You are a wonderful writer, I tell him.” He smiles. “Would you ever write a book?”

“Yes,” he says enthusiastically and begins to type, “not pictured in People magazine yet maybe publishing a book would put in on People’s reporter’s plain but cool list.”

Larry is tired. We’ve been with him for four hours, looking through work, talking on film which is being made into a video for The Autism Acceptance Project. He shakes his tired hand from typing – a long and deliberate task. And we have a plane to catch. Larry will come to Toronto in October and speak to others at the gallery on October 5th. It’s a conversation I would love to continue with this delightful, warm man.


We fly to Vestal, New York. It is raining again like the last time I was here. This time, Jonathan will be with Alan, his father. I haven’t seen him since last December. They greet us, Jonathan looks as excited as he did when I picked them up for the opening of his exhibition at Lonsdale, and he is almost breathless.

I bring him a book from the gallery – illustrations by an artist – a book-long comic strip. Jonathan seems to enjoy it as he reads it in the car on the way to his studio – a building attached to a church which is owned by Joe, his art-teacher/mentor who has known Jonathan since he was seven years old. It is an old musty building and we are lead to the basement where a series of studios, including a clay one, are housed. Jonathan has his own studio way around the corner of the long narrow hall, at the very end.

“I want to start a sculpture,” he declares. Joe was hoping he would draw or finish the one in front of him. Jonathan’s room and the clay studio are filled with political figures. Today, he wants to do George Bush. Again, the camera gets set up and I enter the adjacent room flipping through hundreds of Jonathan’s incredible drawings. I pick drawings from Jonathan’s various stages of interest while talking with Joe and Alan, intermittently.

“How often does Jonathan come here?” I ask Joe.

“He’s here almost every day.”

“No wonder the prolific work,” I comment.

Joe works with other students in his after-school arts program. He has been helping Jonathan for over ten years, making suggestions, exposing Jonathan to different media. I am impressed how Jonathan’s sculpture is becoming more sophisticated, and the speed at which he works. There is a head of Bin Laden sitting on the table, scatterings of other heads throughout the building.

“One day I finally got Jon to do a self-portrait in clay,” Joe says to me while I’m flipping through artwork. “He has done so many heads, and there hasn’t been a problem with any of them when they’ve been fired. But the day he does his own head, it blows up in the kiln.”

I pause. There is irony in this story, but Joe says it, not I.

“Isn’t that bizarre? Not one other head blows apart except for Jonathan’s.”

Later, I see that head as it is proudly sitting on the window ledge of his basement studio. It is not blown apart as much as it is fractured. The outer skull on the left side has fallen off but sits askew next to the remaining head. The inner clay is still round and clean, like looking through the skull to the brain-intact. It reminds me of not so much an incomplete or fractured brain as much as an invasion of one – man’s curiousity to find out the basic functioning – the neurology of mankind.

It is getting late – nearly eight o’clock in the evening and we’ve been going non-stop since nine in the morning. We’ve been with Jon for about three hours. He is getting hungry and tired, the bright camera light is becoming too much for him to bear. He is showing signs of agitation and begins to cry.

“I’m tired. I want to go home.” Alan goes in to soothe him. Father and son are bonded. Jonathan wants to hug his father and there is a sweetness that surrounds them like a cocoon. We all watch. This is not the first time I’ve witnessed the tenderness between them, Alan’s complete devotion to his son. I can tell Alan is a little sad to see his son upset. I can tell, I think, because I understand the sensitivity of a parent towards their child.

I want to tie this up. I want Jonathan to be with his father and go eat.

While wrapping up, Joe goes to calm Jonathan while Alan takes photos of the works I’ve picked for exhibition. I show Joe the picture I’ve used in the Joy of Autism ads and ask him where the piece is. Nobody knows. There are still so many works still to be exhibited, catalogued. Jonathan’s work is his artifact and must never be lost.

To distract Jonathan for a few more minutes, Joe asks if he can replicate that drawing. Jonathan does. He is calmer.

We head to the car to return to the airport. We are returning to Toronto.

“What do you want to eat?” asks Alan to Jon.


We are all salivating in the back at the talk of food. It’s been a long day and we too are hungry.

“I want Fettuccine Alfredo,” says Jon.

Alan holds Jonathan’s hand to keep him calm. Jonathan is indeed experiencing some anxiety issues. It is clear that Alan is a steady source of calm.

“Jonathan has been talking of going to college,” Alan says earlier. I am thinking it’s entirely possible, if not probable. Jonathan is surrounded by the love of his parents, and after meeting Larry, will likely manage his anxiety at some point. Jonathan has a girlfriend, just went to his high-school prom in a limo, and I’ve noticed a language burst since I last saw him.

We say a quick goodbye; Jonathan shakes everyone’s hands and runs back to the car.

“Go feed him!” I laugh and Alan runs after him.

I am delighted to see Jonathan too, but indeed saddened by his sadness, hoping that food and going home will ease his stress. I think of what Larry might have been like at Jonathan’s age. I think of Barbara Moran, the autistic woman, age fifty-five from Topeka, Kansas, who wrote to me of how her sensitivity to noise has made it virtually impossible for her to be around people, and how she says that being on medications and being institutionalized made “her autism worse.” I think about ability, about the title Joy of Autism, about sadness and struggle, but how every autistic person I’ve met and spoken with enjoys being as they are despite their challenges, which even to me some days, is difficult to comprehend. I think about the responsibility of talking about the provocative title Joy of Autism amidst all of these challenges – how some parents might call their children a joy, but “not the autism.” Yet, I hope that the positive messages from autistic people who face these many challenges, will reign. I think about how we define ability and how we must search for it in every individual – and how we must find our little ounces of joy in the many moments of our lives.

Thursday, June 22, 2006



The Autism Acceptance Project is accepting submissions from autistic people from all over the world. A mechanism will be set up on AutSpoken within The Autism Acceptance Project website (under construction).

This project was inspired by an autistic woman, from Topeka, Kansas, Barbara Moran, who sent in her life story and some photographs which will be exhibited at Lonsdale Gallery. She submitted photographs and tiny drawings that give meaning to her story.

Submissions can be of poems, or short stories, or your personal story about autism in mailable or email-able format. Please do not send any artwork, unless they are your drawings or photos fitting an 8 1/2 X 11 inch page, and are specific to your writing.

"Winning" entries (simply meaning we only have so much room to print and/or exhibit your work) will be rewarded a token fee of $50.00 (CDN) and will be displayed at The Lonsdale Gallery in Toronto during the month of October 2006. All entries will remain the property of The Autism Acceptance Project unless you specify that you want the work returned to you. The Autism Acceptance Project will keep your work on it's website in the AutSpoken section. It may also reproduce your writing in gallery materials.

Please include a return address and telephone number in your package.

Mail to:

The Autism Acceptance Project
P.O. Box 23030
Toronto, Ontario
M5N 3A8

or email at

Sunday, June 18, 2006


Happy Autistic Pride Day

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?

Monday, June 12, 2006


Living Library

Harpers recently wrote a little snippet about a Living Library to destigmatize people. Here's a short hotlist of people who are often stereotyped. It's a good exercise to think what comes to mind when you read this list:

African American

Would you like to add to the list in the comments section?

The Living Library is a concept by which members of these groups come in to talk about themselves. I was thinking that The Autism Acceptance Project is very much like a Living Library -- with autistic people coming to talk about themselves and the issues that surround autism. I love the concept and hope others will consider doing something similar in their own towns.

The Autism Acceptance Project -- Exhibition is Free. Tickets for lectures on sale now.

Tuesday, June 06, 2006


Bear With Us

Tickets have gone on sale for the Joy of Autism: Redefining Ability and Quality of Life lectures today (click on side). Thanks for your patience on the website which we are still fixing and loading.

I hope many of you will attend this forum for critical thinking about autism.

Saturday, June 03, 2006


The Purpose of Life

"Cultivate more joy by arranging your life so that more joy will be likely."
--Georgia Witkin, American Professor of Psychiatry

What causes us to be human? Genes? Spirit? The ability to ask “why?” Human beings tend to define themselves in social, spiritual and biological terms. So no, it ain’t all in the genes.

There are many who are intent on finding the cause and cure for autism. They don’t need my energy, money or help. A cause may be found, even if only because man’s ego is at stake if he doesn’t. He will find an answer, even if it is wrong. It is the desire to ask, and to answer the “why?” A desire for order, mechanisms, understanding, and control, even if the mind itself is to forever remain, in all its complexities, an eternal puzzle, perhaps rigged to remain elusive to man. So, a cure may one day be purported, even though the many autistic adults I talk to say they don’t care about the cure for autism – that they wouldn’t take that little “pill.” Like life, this is their challenge. They also say that it is their strength, even those who would be classified as more “severe.”

If people with autism can speak for themselves, if they say they don’t want to be cured, we have to listen. If they are denied the right to speak for themselves or advocate or direct research by big organizations that fund research, then they are denied their basic human rights. For those who can’t advocate for themselves, we still have to listen to the autistic community to guide us in our actions and decisions that effect the well-being and quality of life which extends way beyond mere physical care.

Goethe said
“Der Zweck des lebens ist das lebens selbst.” (The purpose of life is life itself). Life is in the living, the challenge, and the choices we make. So in keeping,

Autism is not
A tragedy
An illness
An epidemic

Autism is
A way of being
A different perspective
A sensory difference
With strengths, abilities, intelligence and something to offer society.

I say that “something” is humanity. What is our responsibility to humanity, and in this context, to those who are autistic?