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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

Wednesday, February 21, 2007


Good Practice in Representing Autism

I just gave my presentation in Montreal at Giant Steps. It was called "The Selling of Autism: how the marketing of fear manipulates the way we treat autistic people." It came on the heels of the 60 minutes piece and of course, the piece in The Globe and Mail, with the advent of prenatal screening not that far off.

I couldn't do too much this week, as my mother went for urgent surgery yesterday. With two rounds of cancer already, and now this surgery, I can tell everyone with certainty that autism is certainly NOT like cancer. Autism is another patch on the quilt of humanity. It is not always easy, but nothing in life is easy.

When I visited Thomas Henderson at Giant Steps in Montreal, a beautiful school for autistic children up to age eighteen and met the kids, I felt at home. The kids were wonderful, all very happy, smiling at me or working. I had the pleasure of meeting another Adam there -- who presented at the ASD Perspectives Lecture Series, autistic and nine years of age. NINE! He presented for one hour. How many other nine year olds would be able to make an hour-long presentation? Adam came up to me and told me he was on CTV. He was quite excited about that. He asked if I had a website, as he so desperately wants one. I said I did. He kept begging his mother: "I want a website too!" and I felt I got the mom into a bit of trouble. Adam, apparently, has found his way into university chat rooms, and like any parent of a young child, she is very concerned about the potential danger. I then met Hugo who also made a presentation, who told me how he enjoyed letters and numbers -- certainly like my Adam -- and how he likes the number six, but not the five becuase the five looks like it could eat you. I heard kids whooping like my Adam does, and for a moment, I thought it was him. There was artwork everywhere, Smart Boards (very cool white boards that kids can use wireless keyboards to do classes, but that you can also write on), pecs, kids doing sign language, and OT room and mroe. But what struck me, as how at home I felt there among the children and teenagers. I felt like I wanted to stay there. I realized, that this was a real telling -- that despite what we write about something, ideals do not always reflect the way we truly feel when we are immersed with dis-abled people -- that we know when we are no longer prejudiced, in this case towards autistic people, until we are swathed within a community of autistics. In my case, I felt warm. I felt I belonged. I wished that my Adam was there with me.

There really is so much to say in how the piece in the Globe was written, how it showed no other balanced side to those who really love their dis-abled children as they are, who find the joy that is inherent in their children mixed in with all those challenges. It doesn't reflect how those with dis-abled children, like the Downs Community of the Canadian Downs Syndrome Society, feel about those wanting to prevent autistic or Downs babies from being born (notice how they celebrate Downs). It doesn't reflect how wonderful my Adam is, who is like the many of the other autistic kids and that the "remediation advocates" use to complain about autism, despite the fact that they like to diagnose Adam without meeting him in order to state that their plight is worse.

When Brenda Deskin announced on CFRB Radio: "Autism is a living nightmare: my son Michael hit me today," I felt really bad for Michael, as autistic people are criminalized all the time, and that is inherently wrong. We need not unfairly represent in order to receive accomodations for our children, or support as parents. One does not need to advocate this way at the expense of a person's dignity. It calls into question about whose life is at stake here, whose career, whose reputation, whose pocketbook, as it seems people are more concerned about all of this rather than really seeking to assist and educate people with autism.
Further, considering how the dis-abled were referenced in history (Nazi Germany), we might need to call into question the legality of making references to the costs of being human. Deskin's fact sheet, co-written with Andrew Kavchak and written in 2005, suggests that not only should special education classes be delivering ABA therapy (ergo you have no choice in how you wish your autistic child to be educated), it also states: that "autism is a lifelong affliction [bold mine] that will result in 90% of afflicted individuals being placed in institutions and residential facilities." The "fact sheet" says it just like the Nazi's did.

It calls into question, when a reporter suggests that all special needs kids should be screened (Boston Globe Editorial: A Clash of Rights in Education) before being allowed to enter schools and programs because someone has over-generalized and criminalized autism,
what prejudice is and why the same screening does not exist for non autistic people who can be more agressive and violent. Prejudice IS a different set of standards that we apply to one set of people over another, noted Professor Emeritus, Bernard Lewis from Princeton, and it is alive an well in autism. All children can be a challenge for their parents. Parents and society still have a responsibility to protect their children from a world that will apply prejudical standards. Therefore, the way we talk about our children and represent autism, is so important here. In our society, representation matters.

Today, with Canada's Fetal Alert Network, the stats show that in Southern Toronto, almost all women who have a confirmed amnio for a genetic defect will terminate -- even late term abortions for children with a cleft lip.

There is some urgency here. We have a huge lack of information and education about living with a disability from those who are disabled and the families who love them. Instead, the media prefer to write about disagreements, challenges, and drama and prejudice is rampant. I was so sad that the article with Szatmari did not contain a balanced view, or a view from an autistic person. Autistics from The Autism Acceptance Project board wrote in after the article, but their letters were not published. We do not get to hear that often from autistic people in the media in order to have ethical discussions about what screening means for autistic people. I wrote in a letter that also went unpublished and of course, only a letter supporting the prenatal screening steamroller was published. I find it continually astonishing that reporters call parents first regarding opinions (including me) and never autistic individuals. Science is big drama these days -- big breakthroughs into understanding our genetic makeup. But we are more than our genes. We are a composite of genes and spirit -- an ineffable makeup of the mystery of the imagination and human spirit. In light of what we know and can do with human life, how much must we now begin to discuss our responsibilities to protect life, to protect that part of being human that we do not know, and perhaps must not "know," for it is what makes us who we are.

On the advice of Margaret Somerville, where I derived this idea of protecting human spirit from her books: The Ethical Canary and The Ethical Imagination, and who is an ethicist and professor of law at McGill University, I suggest we begin by finding what we share as parents and autistic people -- what we value. If I can send out an idea for others to blog about, is not always what divides us (but it is necessary in order to identify bias and prejudice), but also, what unites us. I ask that people expand this list of what it means to implement a "Good Practice in Representing Autism". I have begun a list:

1. Inclusion of autistic people and their voices in fairly talking about autism, at all levels of policy making regarding autism;
2. Reflect autism as a diverse condition that has strengths and challenges;
3.Autism not as defeat in relation to “norm,” but a different way of thinking and learning;
4. Inclusive language instead of exclusive
5. Humanitarian references (not dehumanizing ones)
6. Ethical discussions at all levels: media, autism organizations and societies;
7. Discuss how we protect the “mystery” of being human: What is LIFE?


Blogger mcewen said...

The issue of eugenics in light of recent research has me on edge. I did not know that 'defects' resulted in abortion. [how narrow minded / naive I am!]
Being an older mum, I had tests. Tests revealed an x% chance of one of them being 'hearing impaired.'
I spent the rest of the pregnancy learning as much as I could about the subject and attempting to learn sign language. I wanted to turn into an elephant so that I could have an 18 month pregnancy so that I could be more prepared.
I had assumed that anyone learning from a test, that they child had x% chance of being autistic, would also be in the library, but in a different aisle.
I love tests - he isn't deaf.
Excellent post.
Cheers dears

12:05 PM  
Blogger Jennifer said...

Thank you for this post, Estee. I especially like the idea of involving ethicists into this debate. And I appreciate you linking to the Deskin/Kavckak "fact" sheet. This document, which is almost fact-free, has been extensively used to argue for ABA. It needs to be clearly refuted.

1:46 PM  
Blogger Sharon said...

As usual, you have something important to say and you say it well. Thanks.
I've just written about a questionnaire I received today, asking about the impact of autism on my family. It is a very negative and skewed document. It's an example, I think, of bad practise in representing autism.

4:51 PM  
Anonymous mike stanton said...

Thank you Estee. This is a much needed post.

7:18 PM  
Blogger laurentius rex said...

Well although I will likely not be able to see it from the trailer that has been posted I don't think Amandas appearance on CNN will do much for us either

WHY? has she consented to be on a medical model based programme, the whole idea goes right against the grain of establishing that autism has nothing whatever to do with medicine and is only diagnosed that way by historical accident and cultural practice.

Own goal Amanda,

7:48 PM  
Blogger elmindreda said...

"3.Autism not as defeat in relation to “norm,” but a different way of thinking and learning;"

Not as defeat?

2:08 PM  

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