Autism Backa**wards

Asperger Ninja recenly posted an update on her son's first day of school. After reading it, and Amy's tremendous sense of relief and pride that there were no phone calls, early pick ups, or sad faces at the end of the day, I proceeded to get on my soapbox (which, in case you haven't noticed, I never leave home without) and rant away in a comment on her blog. Because it suddenly struck me - why is this AMAZING mom, who is raising her AMAZING son as a single parent, who writes and advocates passionately and intelligently - why is it that she holds her breath and joins the "sweating panic-y club" over a single day at school? Who among us has not felt this way? Chronically?

It is this way because our mixed up world has got the whole autism thing backwards. That's why.

How is it we allowed ourselves, our strong warrior-parent selves - to be made jumpy by a phone ringing? I still get a sick feeling in my stomach - literally - when my phone rings during school hours. How have we allowed ourselves to lower our eyes slightly when we enter the school to pick up our child early because of a meltdown. Allowing an ever so faint shadow of shame to fall over us, even as we come to collect our most precious and perfect little people, as if they have somehow let people down?

Grrrrrrr. It makes me so mad.

I need to be clear here that Amy was not necessarily writing about any of this, nor does she necessarily share any of these experiences that I'm recounting. She was just writing about the feeling she had when her son had a great first day at school. What I was struck by was how I knew exactly how she felt and at the same time, I resented being put in a position to feel that way. Because in order to have this tremendous sense of relief, you have to be carrying around a whole lotta fear. I resent being afraid of what is going to happen when I send my son to school.

I think that it is a criminal shame that we 'autism parents' end up with this overwhelming sense that our kids are not doing enough/trying enough/meeting expectations enough, because we get inundated with phone calls and early pick ups and sad faces... which are all just an illusion of inadequacy.

I think often the reality is that our kids are working DAMN FRICKEN HARD to navigate this messed up neurotypical world, and they just need an environment that values and respects and recognizes their DAMN FRICKEN HARD work. I think the reality is that our kids go through days, weeks, years of school having beautiful and important ideas, sharing brilliant new ways of thinking and seeing, offering endless opportunities for diversifying our collective wisdom, and much of it goes completely unnoticed. Because there is a lack of recognition that often the problem is not with our kids meeting expectations, but rather that the expectations are profoundly neurocentric.

I continue to be amazed by how insightful and flexible my son is, considering the textbook (neurocentric) definition of his diagnosis would indicate he cannot be. His counsellors at summer camp (5 weeks of day camp) made a point of telling me that nearly all the problems they encountered that involved Simon, were not caused by him so much as they were caused by the unwillingness/unpreparedness of his peers to understand, accept or accommodate him.

The museum daycamp Simon went to this summer was a lot like school. Really, that's why we chose it. It had classrooms, group work, individual work, crafts and writing and reading, and a room full of 30 noisy kids, one 'teacher' and a couple of helpers. Normally I would shy away from this kind of trial by fire, but Simon is insisting on going back to public school to be with his friends this year, and I needed to get a sense of how much he could handle.

In 5 weeks of Grade 1 last year we received more phone calls from the school than I can count. In one, a teacher asked me if Simon was "always a naughty little boy who never does what he's told". Another was from a gym teacher who said he "sure doesn't know that Simon", when I said that my son was sweet and wonderful at home.

In 5 weeks of daycamp at our local museum this summer, I received 2 phone calls. One was to say that Simon had been attacked by a little boy with significant aggression issues, and we really needed to come get him, as he was quite shaken up (with marks on his neck from being choked, and deep scratches down his cheek). My reaction to that phone call was complete and unadulterated compassion. For my son obviously, but also for the other boy and his family, who had received a very different kind of phone call to come and pick up their child.

The second phone call on another day was from his group leader, who was just bursting with pride as she recounted the way Simon had tried to encourage a compromise in his group that day. The boys were forming a team and agreeing on a name. All the boys wanted "Hammerheads" but Simon wanted "Sharks". The debate went on until Simon offered: "Let's compromise and be the Hammerhead Sharks". A poetically literal take on compromise.

I know many of you are familiar with how significant this kind of thinking is for a 7 year old Aspie. And the impact he had on his leaders for those 5 weeks was remarkable. One of them even said she hadn't considered working with kids before (she was a University Science Student) but she was now considering volunteering with kids who have special needs. And I hope she does because she's damn good at it.

So what was different between the school experience and the daycamp experience? Were these really two different children: one a naughty and annoying little boy who was unmanageable and the cause of endless problems and phone calls, while the other child was generally cooperative, hard working and engaging - even inspiring?

Nope. Same kid. My kid.

One environment didn't work, the other one did. And this is where the world has got this whole autism thing all backwards.

The key concept here is meaningful inclusion. And this brings me to a truly MUST SEE film called Including Samuel. It's airing on PBS stations across the continent this fall, and I was fortunate to catch it the other night. It was a stunning inside account of a family's battle to have their special needs son meaningfully included in his mainstream class, and it includes discussion of autism in the classroom. You need to see this film. And I dare your heart not to grow a few sizes with one look at Samuel's smile.

There were so many gems of wisdom in this film that it's hard to narrow them down, but there are a few that I really wanted to share with you.

First, the filmaker (a photojournalist and the father of Samuel) interviews a teacher who is so overwhelmed by the demands of including a special needs child (Downs Syndrome - who has a full-time assistant) in her class, that she is literally giving off waves of stress through your tv screen and is reduced to tears. She says: "How am I supposed to teach this girl, and the valedictorian at the same time? I don't know how to do that."

This statement stopped me cold. Did you catch it? Did you catch the fundamental flaw in her logic? The underlying misconception that is surely informing the way she is teaching?

Here it is: why has she determined that this girl and the valedictorian cannot be one in the same? She has already decided this girl is at one end of the scale, and the valedictorian is at the other, and not only can this girl never be valedictorian, but between the two is neither common ground, shared educational needs, nor respective gifts waiting to be tapped. Instead, there is a chasm between the two that the teacher feels powerless to bridge.

Ultimately it is not this child who is causing this teacher such palpable stress. It is the lens through which she is seeing inclusion, the bias she holds against differently abled students. She cannot see the value this girl brings to the educational experience of all her students. Part of that is her own fault, part is the fault of her institution. Strikingly, interviews with the other students in the class revealed that they wanted the girl included more, not less.

The final point I want to make stems from one of the most profound wisdoms I've heard in a long time. An administrator interviewed in the film said something like this:

'If schools are looking to design meaningful inclusion, then we need to think about whether there is anywhere in society right now where that's already happening, because that is our model. Is there somewhere that full inclusion is already being implemented? The answer is yes - it's being implemented in the family.'

Which tells me that to start reversing all this backwardness, we need more phone calls to the school, and fewer from them.