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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

Monday, January 16, 2006


Intuition Precedes Science

Reading about autism can both help and hinder me. Two years ago, when Adam was initially diagnosed with autism, I began reading the typical stuff -- Catherine Maurice and then moved on to so-called "experts" -- scientists, academics. I have a Masters Degree in Fine Art History -- I am a wannabe to a certain extent. Yet, when it comes to Adam, and I'm sure many parents will relate to this, I just KNOW. It's not that I know what to know, but I feel and have always felt at odds with the many elusive theories out there about autism. And so, two years have gone by and I realize that it is not my son that wears me down on the days "the cup is half empty," but rather, all those "experts" out there whose egos come before our children, who must push their theories without ever having given birth to, or raised a so-called "autistic" child. Worse, autism as metaphor (Biklen) has permeated clinical and educational consciousness to such an extent, that our kids do not even have a fair start out the gates. They are doomed before they begin. Parents who are not inclined to trust themselves, to read, to question, who believe in clinicians and their assessments that set our kids up for failure at the get go, feel overwhelmed and depressed.

I've never had a great love of science. I believe science must be rigorous and I wish academic egos could go in the garbage where they belong. (Read The Behaviour Analyst journal for some of the most hilarious studies I've ever read like "How to introduce new foods to autistic children" -- gosh golly, ever asked a mother? And all of this gets funded, people!!). Foregoing the obvious fact that nothing is perfect and we still need science, then comes along a researcher or two that actually furthers our understanding about autism in a positive way. Please read Douglas Biklen's book (Autism and the Myth of the Person Alone). It is a wonderful read.

The problem with autism now, NAAR, Autism Society, many clinicians, teachers, some behaviour analysts and other therapists (even RDI and Floortime ones), is the absolute belief in autism as "inside the person" as Biklen puts it. In fact, in my earlier days at NAAR, I also held the same belief that autism somehow "masked" my true son before I realized that autism is simply a way of being. There was good reason I held that previous belief and they were the theories of Mind-Blindness, Central Coherence theory and the theory of impaired Executive Function.

As time went on and I tried to hold up these theories against my son, it felt like trying to squish him into other identities. I didn't see that he had any problems with memory, affection, wanting to be social, linking concepts, shifting attention, eye contact, joint attention...he's got all of that. What I did recognize that he needed to be shown how to do a lot of things -- how to play with a toy, how to join a group. His biggest challenges to date is "stereotypy" or "stims" and attention which is affected because of them. On the whole, Adam is a child who wants to learn and be independent and takes pride with his competence. Adam's language is delayed --he speaks but it may take him time to process, or it is still prompt-dependent. When he's not sure what the answer to a question is, he is echolalic. Yet, when I write the answers down for him, he reads them fluently. Written language seems to flow while processing verbal language is more difficult. But it is coming with lots of practise. Motivation is often identified as a challenge for him, and for many children with autism. But even "motivation" is too general a term when we learn from Biklen's synopsis of other science that what we thought as lack of motivation (again another small box that doesn't seem to fit my son), could be related to other factors:

"Bara, Bucciarelli and Colle hypothesize that a single rather narrow impairment such as attention difficulties could affect a range of other cognitive functions, thus causing a person to appear incompetent in higher-order thinking, when the problem is really more on performance (2001, p.219) under particular conditions." (p.42-3). In regards to theories on so-called impairment of Executive Function, Biklen states that the genetic view to autism is pessimisitic and does not consider the person who is classified autistic as elastic like the rest of us:

"The nature side of the argument holds that people are born smart or not, thus exonerating socially created inequities such as poverty and poor educational opportunity from culpability for stunting a person's development. Similarly, when a theory treats autism primarily or exclusively as an internal state or trait, it may, albeit possibly unintentionally, imply biological determinism. Save for the unlikely prospect that science could cure a person of the presumed internal flaw, such a theory is fundamentally a pessimistic stance. The theory defines the person as more or less bound in and made static by trait, with any chance of "improvement" (i.e., becoming more "normal") being modest or unlikely." (Biklen, p.45)

To say that an person classified as autistic is not at all influenced and nurtured by the environment is absurd. To hold the view that one's child will never develop and grow is not only bleak, but unfair and it is the fault of those scientists who push the deterministic views upon parents.

About a year ago, Adam, Henry and I took part in the baby sibs research project here in Toronto. Adam underwent a series of cognitive assessements by a former behaviourist student who was hired by this particular researcher. It was your typical assessment -- and she spoke what I call "dumbspeak" to Adam the whole time, you know, that deliberate higher pitched tone of voice. I swear to this day, here is a person who has no empathy and a set of presumptions about autism. She would look at me like I was in denial about Adam's abilities (no, disabilities in her view). She would peer at me from behind her black rimmed glasses. I am certain to this day that Adam could sense her lack of faith in him. I am certain that any child who has been given the diagnosis of autism knows who believes in them and who doesn't. To this day, I want to smack that girl. To this day, it baffles me when I hear parents say with such certainty that "my child will end up in an institution," or "my child will never do x,y or z." And it may just be so. Not because the child, or adult, cannot grow, but because they perhaps may not be growing in an environment that is nurturing. For all we do as parents, the one thing we must have is optimism and faith in ourselves and our children.

It is difficult to interpret the way Adam sees or experience the world. Interpretations of his behaviour are inherently dangerous, so thanks to all those people who have expressed themselves who are autistic. I think my family and I try to interpret Adam every day. It in fact bothers me when someone says he wants something as presumtion without any intentional or verbal communication from Adam. We are all learning to wait him out. If he needs time, it's okay to give it to him. Autism needs time, and yes, more research. But listening to instinct is an underrated skill in science and yet, science has nothing to argue without it.


Blogger SquareGirl said...

Intuition. you are right t o trust it. And I belive you will start to see how strong Adam's intuition is as well even more everyday.

12:55 AM  
Blogger Christine said...

Intuition is a hard thing to rely on when it comes to the well-being of our children. But, at the end of the day we have to go to sleep feeling that what we are doing is right for the individual needs of our child. For me, it is now six months into this new journey and I am only occassionally having days when I don't feel consumed by self-doubt and inadequecies. During this six months I have just desparately wanted someone -- anyone -- to show me the right path. Instead I find myself hacking my own way through the jungle! And along the way I have discovered that I am, indeed, the expert on Oliver; that I DO need to trust my intuition. But, Man! It isn't easy.

Also, I ordered a copy of Biklen's book on your recommendation. I can't wait till it arrives. I need a new paradigm.

9:46 AM  
Blogger Ken Fabian said...

Which of Bikler's many books are you quoting from? Also, my Asperger-like mind noticed that you wrote "stereodypy" and you probably meant "stereotypy." Your blog was clear and cogent. Thank you.

Ken Fabian

3:21 PM  
Anonymous Anonymous said...

Ken-you couldnt help yourself, you had to correct her.

12:10 AM  

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