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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, April 05, 2007


Sensitivity Begins At Home

Just like in The Music Man, March came in like a lion. April approaches with trepidation, as snow has fallen on what should be the early days of tulips and daffodils.

The year has begun with challenges. Mother’s health, my knee surgery, anxiety and I wonder how it all effects my little guy, who is so attune to the environment and moods around him. I can’t say that my own immune system isn’t effected when the house in under duress. I too, like Adam, am very much effected by moods, and environment. I consider at times that the best remedy is to go escape to the country and get the heck out of the punitive demands of the city. There is something of a pulse here in Toronto – programs to run to, schedules to adhere to, and obligations to attend to. It is endemic to the way we are supposed to live here in the city, I suppose. I don’t always like the way we are forced to live, and I don’t think it’s all that healthy for Adam who is so touched by all the stress. The world stops for no one, as they say.

The other factor is our doom and gloom society – be it through terror and “war on whatever” campaigns – it is exhausting. There is very little happiness in society these days, which makes it all the more important that we focus on creating it. Forget about the doom and gloom campaigns that are intended to scare you and get you to act and throw money. Create a world that you want to live in by starting at home. When I become overwhelmed, I just try to remember what is important and focus on that. I wonder how important these primary years are – those milestones as it were – to Adam’s life. I wonder about just learning, being happy, experiencing and living life.

I have four step-children in addition to Adam. Two are out of town at university now. One of my step-sons came to me yesterday and asked for my advice. He rarely does this, so I took it very seriously. He said at Kings College in Halifax, his psychology professor told them of various therapies for autistic people and that ABA was “necessary.” Joe, my step-son, asked why Adam wasn’t “better yet,” with all the programs he has at home. I would like to meet that professor who gave Joe the idea that Adam should “get better,” as opposed to simply learning the best way he can. So I went into my spiel about helping Adam to learn and be the best he can be. I don’t know if Joe understood this yet – he was the one son that went to an all boys school that demands that you “be someone,” – that successful doctor, lawyer or business man. Joe went on to describe how he had an Aspergers boy at his camp where Joe was his counselor. The boy had “behavioural” problems, Joe said, and “was not allowed to return to camp.” “We judged him as we would have anyone without a disability,” he said, but he said it as if he were questioning himself, and trying to understand.

It is here that I find that people have the wrong idea about inclusion – as if it takes no extra effort or training, and that the onus is on the person with the disability to “fit in,” as was clearly the case at this camp. It is clear that no matter how “nice” people are, that if they don’t understand autism and don’t have the toolbox, so to speak, they can do little for the autistic individual. Inclusion isn’t just including, it is learning HOW to include, to listen, to accommodate and to understand. An autistic person cannot be included without such understanding and provision, whatever that provision may be because it may be different for each autistic individual.

So now the camp loses, the Asperger’s teen loses. He is not allowed to come back on the basis that he does not fit in among the group of “nice” people. I asked Joe to consider when that may happen to our dear little Adam.


Blogger mcewen said...

I sympathise with the 'young adult' perspective, not black and white exactly, more optimistic if not simplistic.
I was going to suggest some 'liquid vitamins' to give you a bit of zip and zing, but I think that escaping from the city is probably a much better option.

11:49 AM  
Blogger Mom Embracing Autism said...

You're right, our society is one of "doom and gloom". I get so frustrated watching and listening to "mainstream" news because the underlying theme in just about everything is that we are all a bunch of victims and the only one who can save us is the government. Ha! Tell that to the people who live down in New Orleans (and amazingly, some of them are still waiting for the government to fix things for them!) This theme has been all too present in the two shows I have seen about autism on television recently as well. It drives me crazy! I think everyone could benefit from remembering that THE FAMILY is the cornerstone of civilization.

7:17 AM  
Blogger Aspiegirl44 said...

Thank you for sharing Estee. Why is it so hard for peole to just try and learn about us with autism a little bit. I try hard to learn too. I just wish they would spend a little time to try to understand us better. Nobody wants to take the time I guess. I usually do ok but the last few weeks I have been super depressed. I fight so hard to get them to understand but they dont even want to try. I feel bad for that boy too. How can you fight to raise awareness for the right kind of inclusion, etc if nobody cares about it. Now I am bawling my eyes out. Do you ever get just tired of it all?

I am the one with a disability and I have to try to be like a mom too and fight and I have autism and I am not that strong all the time. Seriously, how can the person with autism do all this. I am doing it alone too and its hard. Ok sorry for dumping.



10:09 AM  

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