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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

Thursday, January 19, 2006


The Importance of Presuming Competence

Biklen, from who I borrowed the title for this post, sums it up in that sentence -- how important it is for us to assume that ALL autistic people are competent and intelligent. I've written it before and I will keep writing it.

I believe that to coin autism in any negative sense is not our perogative -- it is the right of those with autism to tell us like it is, not for us to interpret their behaviour ("behavioural deficits") or presume that typical responses are the only or right responses. I believe that the decisions to be made on what should be done in the research and therapeutic fields should be determined by those with autism. Reading the stories of Richard Attfield, Sue Rubin, Donna Williams, Temple Grandin, Stephen Shore, Lucy Blackthorn and many others for the exhibit I put together of Jonathan Lerman (I prepared an exhibit upstairs titled "The Voices of Autism" with floating quotes from those labelled with autism), has only made my opinions more resolute.

As organizations, teachers, fundraisers and parents, we MUST make way for these accounts. We must provide supports (determined by those with autism who decide what supports they need) to enable people with autism live successful lives. As I presented in previous posts, the success of the person classified autistic lies in our supports, our school systems. If our organizations for autism only present in terms that make autism sound TERMINAL (cures should be sought for cancer, not necssarily for autism), this will effect the way people think about the people labeled with it -- without hope. I believe that the act of advocating the rights of our children is a priority in this "journey."

"In its simplest articulation, presuming competence means that the outsider regards the person labeld autistic as a thinking, feeling person. This is precisely the stance that every educator must take -- failing to adopt this posture, the teacher would forever doubt whether to try to educate at all, and would likely be quick to give up the effort. Aside from the optimisim it implies, another benefit of presuming competence framework over a deficit orientation -- where particular levels of incompetence (e.g., belief that the person is incapable of learning to read or lacks the ability to appreciate other people's perspectives) are presumed -- is that when a student does not reveal the competence a teacher expects, the teacher is required to turn inward and ask, "What other approach can I try?" (Biklen, p. 73)

Of all the stories I've read, it is interesting to note that so-called "behavioural deficits" have been often identified as the result of anger and frustration on the part of the person labeled autistic -- sometimes also being misunderstood by others who have preconceived notions of what it means to be normal, thereby silently, or perhaps not so silently, passing judgement on them. Richard Attfield notes that he cannot perform for such people. I know that Adam will not perform for such people.

The people with autism who feel "successful" labled "low-functioning" in their childhoods, were the ones whose parents believed in them and worked with them. Biklen was asked "What percentage of people with autism can be expected to achieve the communication abilities of Albert Frugone or Richard Attfield or Lucy Blackman has achieved?" He suggests "that the percentage is likely to be a reflection of context. How many have parents -- in the main this has been mothers -- who can contribute huge amounts of time and energy to their education? How many have access to academic school cirricula? How many enjoy access to communication training and hundreds of hours or practise? It is likely not insignificant that [the aformentioned -- Frugone and so on], all had mothers who devoted themselves to providing intense instruction and who interceded with schools to see that they received academic content even when social policy and prevailing professional and social doctrine and attitudes discouraged it." (p.67)

This is not a profitable stance nor does it relieve parental guilt of never feeling like we're doing enough for our children. But it seems to be true. I know many mothers who sacrafice their time and their work in order to study and teach for the sake of helping our kids. I'm not taking a Bettleheim stance here, but intensive practise and advocacy and working with curriculae is an everyday job of the parent with a child labeled autistic.

P.S. Will the scientific community ever buy the "nurture" argument?


Anonymous Bonnie Ventura said...

"The percentage is likely to be a reflection of context."

This is very true indeed! Any child will do better if he or she is seen as likely to succeed and is given plenty of opportunity and encouragement.

"I know many mothers who sacrafice their time and their work in order to study and teach for the sake of helping our kids. I'm not taking a Bettleheim stance here, but intensive practise and advocacy and working with curriculae is an everyday job of the parent with a child labeled autistic."

It strikes me as rather sad that, in today's society, spending a significant amount of time with one's child is so widely viewed as a sacrifice. I don't intend this as a criticism of mothers who work outside the home, but when my children were small, I spent most of my day reading picture books to them, drawing and labeling pictures much as you described in your magnadoodle post (we did a lot with magnadoodles too), and encouraging them to invent make-believe games.

I didn't know anything about autism then, and I looked at it from the point of view that we were all playing together! I didn't create lesson plans or schedule "intensive practise" sessions. When my children had questions, I did my best to answer them, and if there was something they didn't understand, I tried to find a hands-on activity to illustrate the point. I just thought that was what parents did...

I understand now that my view of parenting was highly unusual because of all the time that my parents spent with me when I was a hyperlexic child, but it leaves me wondering: Was my perspective skewed, or is society's?

5:55 PM  
Blogger Kristina Chew said...

The notion of "presuming competence" ought to be taught as Autism Teacher and Therapist 101. Our kids know when no one expects anything of them and become angry, frustrated, enraged, cheated. People talk so much about fostering self-esteem in children and that must include ASD kids absolutely.

6:10 PM  
Blogger SquareGirl said...

I echo what Kristina said. Again Estee, thank you for this wonderful post.

10:57 PM  
Blogger indexreal1 said...

Hi. I searched for autism blogs and found your blog.

I developed this autism website...

Please let me know your opinion.

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Dave Lewis
Las Vegas, NV.

6:18 AM  
Anonymous Anonymous said...

hi iam am nicole and i have been searching for info on autism for my speech.i came across here and it helped alot thanks much :)

5:16 PM  
Anonymous Anonymous said...

I have been trying to help my niece who by using FC that her life is horrible and asks everyday if I can help her. Her Mainstream teachers in a special school use child care level education to her, it distressses her every day. These few words just read made it clear to what now needs ro be done. home school her.
Aunty Queensland

5:58 AM  

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