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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, January 13, 2006


Autism and Paradox

Everytime I have a resolute opinion about autism, a moment later, I feel I must offer an antithesis. The feelings conflict because autism is itself a paradox. Of knowing and unknowing, of ability and inability, of what is present and what is missing. Perhaps only as an outsider do I view it this way.

First, there is Donna William's description in her book Exposure Anxiety: "Can't do it for myself; Can't do it by myself; Can't do it as myself." And yet, a person with the diagnosis of autism, let's use my son as an example, does many things by himself, albiet not always under scrutiny or on demand. What appears like a missing piece or to a layperson, a cognitive delay or inability, is in fact ability obscured. Autism is indeed not what it appears, and the way we treat it is ultimately paradoxical -- trying to teach someone who knows inherently, like teaching emotion to an autistic person highly tuned in to it -- perhaps it's knowing and perceiving without knowing how to translate it into another language -- the langauge the rest of us understand? But then this is not so with writers and artists who are autistic, who have found a common ground with which to communicate. Going back to face recognition seems almost ridculous when we begin to understand the complexity of perception and thought beneath the surface of autism's appearance. But in order to translate it to operating in our world, the common language, simply put, must be used?

The way I deal with autism in the way we teach Adam is in constant flux as a result of him -- it is trying to find a way to teach that challenges him while at the same time bringing him to respond at any time. I am trying some behavioural approaches without wanting to subscribe to behaviourism, solely because learning is in large part based on pride, and marathons are won with ribbons. I like what Donna Williams says about work on behaviour: "for with Exposure Anxiety, more than any other condition I can imagine, compliance is not a long-term sustainable answer if our goal is independence in capable people who cannot handle awareness of the self." Or consider this quote about social-emotional development:

"The only things that could actually lend support rather than add to incapacity were things like objects, nature, reflection or the sense of myself in the third person as a form of company. Essentially, these "autistic" self-reassurances made it more possible to dare communication, expression, or involvement or a true self-expressive kind (as opposed to avoidant, diversion, and retaliation responses). It's important to realize here that what I was probably trying to get around was not an emotional development issue, but the interference of my own chemistry mechanisms which were triggered too easily. Many people think that getting through to people is the answer. When you are looking at underlying physiological problems and their impact, there may be very little the outside world can to to reassure. It maybe more a matter of doing what one can to to help people chemically and understand how the behvaioural approach may interact with that chemistry to the benefit or detriment of the person's cognitive, communication and socio-emotional development." Exposure Anxiety, p.41

Ok, I'll have to work out these raw thoughts. What I'm trying to allude to is the utter confusion between our way of looking at things, at how we should view the world, interact and communicate and all the nitty gritty in between that makes autism difficult for the rest of us to perceive and understand. We do everything in our power to change the autistic person. We do it under the premise of helping them "cope" and "adapt" (my own goals -- I still grapple with them), without actually knowing what it is a person with autism wants. It is so difficult when they cannot tell us themselves, or when children are so young, we try as parents interpret and make choices in their best interests.

I believe that this ethical grappling as a parent must be crucial -- always trying to understand and figure out the best we can do while honouring our children and who they are with autism.

I received a disturbing link today on Dr. Joseph Buxbaum's research on MSNBC -- NAAR supported:

"Dr. Joseph Buxbaum heads up the Autism Genome Project at the Mount Sinai School of Medicine. Buxbaum says he expects major progress in identifying the genes associated with autism in the next decade.

“I think within ten years we'll have found the genes of major affect and most of the genes of minor affect,” said Buxbaum. “That will then lead to reasonable targets for drug interventions. It will lead to much better diagnosis and certainly earlier diagnosis.”

Buxbaum says there could be a prenatal test within 10 years.

“If we get to the point where we have 10 genes that predict risk to some significant degree, then there is a prenatal test,” he said.

Once genes are identified, there will be targets for drug intervention.

What does this imply? Why do we have prenatal testing - to what end? I think the likelihood that abortion will be offered if an autistic fetus is identified. Does anyone think of the reprecussions of all this research? Abortion of so-called "disabled" fetus' is akin to ethnic cleansing in my opinion. We are not ready to make these decisions, we have not had enough time to debate these important bioethical issues, these researchers and the organizations that support them are like bulldozers trying to pushing this along before we really talk about what's at stake. Whether you believe the following people are Aspergers or not(I acknowledge that there is uncertainty, but let's use as examples for the sake of this argument), "would the world consider aborting the next Bill Gates or Albert Einstein?" asks Arthur Kaplan at the Centre for Bioethics at the University of Pennsylvania. He states that the future of society depends on how we answer these questions, and I believe he is right.

I have HUGE problems with prenatal testing for autism and I urge all of you reading this to join me in this dialogue and raise your objections everywhere. If any of you are lobbyists, come aboard. This is a very disturbing trend that needs a whole lot of dialogue.


Anonymous Joseph Buxbaum said...

The first thing to remember is that unlike some other disorders, there is evidence that behavioral interventions work in autism, at least in some cases. In addition, although it has certainly not been proven, the general thought is that early and more intensive intervention will be more effective than later and less intensive intervention. So, in complete contrast to what you suggest, I am of the thought that prenatal, perinatal and postnatal testing will allow for appropriate behavioral interventions for children at risk.

Note that the question of testing and of recurrence risk is the question that I most often receive from parents. I think this reflects the deep concern of parents with one seriously affected child that desire to have another child. I think we can be sure that none of the parents who ask me about these issues are the parents of a Bill Gates or an Albert Einstein.

With best regards,
Joseph Buxbaum

5:34 PM  
Blogger Ettina said...

What evidence?
I have looked and haven't found any well-controlled studies showing ABA actually reduces autism. Especially if you refuse to ignore internal states.
Regarding your comment about Bill Gates and Albert Einstein, I don't think not being as high functioning as them makes you less valuable. I think all people are of equal worth.
Besides the fact that autism varies quite a lot even within families, so a highly gifted verbal autistic with mild to no self-care issues could be born to parents who also have a nonverbal autistic kid with severe self-care issues.

5:14 PM  

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