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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, February 04, 2006

 

The Colour Autism

Will the real Autism please stand up? I'm not sure what colour Autism we're talking about. Often, I hear that the goal for people with Autism, goals prepared by people without Autism is to render the person with Autism "indistinguishable from their peers" -- in other words, to make people with Autism appear more "normal."

I suppose it's an easy trap because we live (as parents, educators and the like) in the colour typical (well, this too is debateable). At cocktail parties, social dinners, if I get an audience interested in Autism, I usually get hit with the same array of questions:

1. How's Adam doing? (Like he's got a cold -- just when will he get better?)
2. Will Adam go to a normal school?
3. Will he go to university?
4. Will he get married?

These are honest questions coming from people who want a picture of Autism. They are the questions that we parents think about every day, maybe even aspire to -- we want our kids to be fulfilled and that may include these milestones. I know that I hold pretty much the same expectation for my son as I did before he was diagnosed with Autism except the frame has changed. I hold this expectation because I can also see that, with support, he can achieve these goals. The framing of expectations means that I don't change them, I just change how I view the journey.

If we are not paying attention, however, we can fall into the trap of making Autism appear more acceptable by making it look the same as the rest of us. In other words, these are the benchmarks of success in the colour typical. If people with Autism talk, that is more acceptable. If they can go to a "regular" school, that is even more accepatable. If they go to university or we call all Autistics "geniuses" we do so at the peril of those with Autism who cannot or who are not so. We have to be careful what colour we are painting Autism and not be afraid to use a different hue.

I experienced this directly by visiting the MukiBaum Centre this week (see post titled "Smack Dab in the Middle") and by going to the Snoezelen Pool today. Watching other kids with Autism, teenagers, some kids with Cerebral Palsy, yelping with their teenage and toddler voices layered in glee, and my little Adam bouncing on Grandpa's lap, I saw the colour Autism...and it was beautiful.

7 Comments:

Blogger Zilari said...

Wow. You've expressed here one of the concepts I am trying to express with my own blog...that "success" and "autism" are not mutually exclusive, and that having a fulfilling life does not mean being able to check off a particular list of items that indicate typicality. I am considered to be "high functioning" because I have a college degree and a job, but these two accomplishments do not define my entire existence. They are only parts of the picture...and depending on what people know about me, they could conclude that either I'm (a) perfectly normal or (b) living some sort of miserable, limited life.

If all someone knew about me was that I struggle greatly with phone calls, need to do things in a set order every day, cannot function without a checklist, melt down at changes in plans, twist my fingers and hand-flap, do not have a driver's license at age 27, did not date in high school, did not attend the prom, spend 99% of weekend evenings at home engaged in solitary activities, fixate on parts of things constantly, struggle to interpret people's intentions and have extreme difficulty identifying sarcasm...well, then, they might get a very different impression than they might if they knew I am actually a very happy individual who is constantly finding ways to work WITH my neurology, rather than against it.

I have been very impressed so far with reading your blog...I think it is wonderful that you respect your son as an individual. That definitely comes through in your writing.

5:43 PM  
Blogger Kev said...

"I saw the colour Autism...and it was beautiful."

Perfect. Just....perfect.

5:51 AM  
Anonymous shawn said...

"not be afraid to use a different hue"

Also perfect!

10:12 AM  
Blogger Kristina Chew said...

Thus do we, they, all of us speak of a "spectrum." And colors don't look the same to all viewers----

4:32 PM  
Anonymous Anonymous said...

There are probably as many colours of autism as there are people with autism. As for the questions people ask and the goals you hold for your child, consider whether any parent of any child who is not quite 4 can reasonably answer whether their child will marry or go to university.These are our own goals, the goals society has drilled into heads as being important.Go into any "normal" school and you will see a tremendous range of abilities and interests and talents.Most "normal" schools do very little in the way of nurturing any of these even if they say that they do.
When people ask you questions about your child feel free to turn the question around and ask them which university their toddlers will be attending.
As you have written in previous posts people with autism can and have achieved much in life. You are ensuring that your son gets the best possible start in life.
Back to your request for the real autism to stand up I can only add "will the real normal please stand up."

1:56 PM  
Blogger Estee Klar-Wolfond said...

Great response!

Thank you!

Estee

5:25 PM  
Anonymous Diane Larsen said...

LOVE THIS!! There is no way an intelligent person can categorize these children. I can tell you this...whatever the goal, whatever the dream, it has to be what is RIGHT for the child. I know all children have magnificent abilities. I am striving to change things where I live to grant hope to my son for wherever our journey may lead. As parents we can do this. It may not be common, but it is about time!

11:09 AM  

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