On My Love Affair with Autism

Bet you weren't expecting that title huh? Tonight those are the words that came to my mind, sauntered in all on their own. And this time they came alone. They left their little friend "but", at home.

We bloggers are always and forever writing posts that celebrate autism's gifts, and then customarily acknowledge its challenges. That is a worthwhile approach, and it's what I've done for most of the past year and a half. But I've been struggling to decide what to write for Autism Awareness month, that I haven't already written before. And this is it.

Because tonight, I just dont feel like writing about our challenges. Tonight I feel like giving Autism a great big hug. Don't particularly know why, except maybe that it's been too long since we last embraced. I was thinking tonight about how it's taken me a long, long time to get to a point in my life where I really understand what I love, and conversely, to recognize all that which is superfluous to a rich, rewarding life.

What do I love? I love my disordered little family; I love our smaller-than-we-could-afford-but-not-moving-because-we-love-our-neighbours little house; I love vintage fabrics sewn into cushions on a window seat; I love fresh flowers in the house and opening windows in spring; I love spending my days with the two little people I created and brought into the world; and I love a glass of red wine on the front porch while Daddy puts our creations to bed.

And as I write this list of things I love, it occurrs to me that Autism belongs here. It belongs on my Love List. I'll tell you why:

I love Autism because it made my son one of the most charming, engaging, beguiling, enchanting little boys ever in the history of always. Strangers routinely stopped me to comment on how he seemed to almost... glow. I love his glow.

I love Autism because it opened my mind and challenged me on long-held stereotypes that I never ever would have confronted without it. For example, it turns out not every homeschooler is a sister wife. Go figure!

I love Autism because it forced me to reconsider my priorities, and it relentlessly hounded me until I got them straight.

I love Autism because it inspired me - enought to pull me back to my true love: writing.
 
I love Autism because it has brought me here, to meet you. To learn from and share with you, to forge deeply meaningful friendships and wide reaching connections that I will not only cherish for my entire life, but which I could not possibly imagine my life without.

I love Autism because it has brought me more patience, clarity of thought, confidence in advocacy, and passion for living a genuine life, than I ever could have achieved without it.

I love Autism because diversity and yes, even difficulty, make the world a richer place.

I love Austim because many believe that some of the greatest minds in history have been autistic, and I am one of those believers. While I'm no scientist, I do believe that Autism - and the way we respond to Autism's differences - makes our species stronger, not weaker. 

But most of all I love Autism because it, as much as I, created my son. And if you met him you would know that he is passion and compassion, beauty and wisdom, humour and fear, and darkness and light, all embodied. He is Autism, and I love them both.

April Archives: Why My Child Will Be A Mouseketeer When Pigs Fly

Oh how do I detest thee Disney, let me count the ways...


As a woman who’s grown up in North America during the second half of the Disney Dynasty, I have a love-hate relationship with this megalithic manufacturer of cultural expectations and disappointments. I could never relate to the Princess pack as a small child. But oh… how I longed to.

Everything is so simple in the Land of Disney. And my childhood could have used a dose of simple. But it never came… I never went to a prom (didn’t really have those in rural Canada), never wore a frilly dress, never got swept off my feet by a handsome prince. I’m less bitter than I am… perplexed. How is it that I actually have a sense of inadequacy because of this? Despite a University degree, a great career, loving husband, magical kids, comfortable lifestyle... How is it possible that I could still, as an intelligent woman, allow myself to feel this way, all on account of a company who’s mascot is a rather tiresome cartoon mouse?

When I think about Disney, I think about unattainable standards, narrowly defined roles, reinforced stereotypes, and generations destined for disappointment. I think about a boat that never rocks, an establishment never challenged. Sure, if you are in the 2% of the population who fits all the requirements to actually be a Disney Princess, I suppose they don't seem so evil. But as harmless as an entertainment company may seem, I believe Disney’s powerful reach extends right to the very heart of our culture. Moreover, I believe it is particularly devastating to a culture that seeks a wide circle of acceptance for neurodiversity.

So what does all this have to do with kids who are markedly different than the ‘norm’ you ask? Well, this thought process all began after I read a post on a discussion group a month or so ago. It was a mother desperately pleading for reasons why her life had gone so wrong, lamenting why she had been given an Autistic child instead of a ‘normal’ one. Her comments paraphrased: ‘I was supposed to be driving my kids to little league or Boy Scouts, instead I’m driving all over to therapy appointments. It wasn’t supposed to be this way.’

Now the problem for me as I read the post was two-fold. First, her child’s diagnosis was not new. It had been in place for several years, so it wasn't an initial raw reaction that was being shared. Second, her child was not far into the spectrum in terms of what is widely referred to as ‘severity’. So at first, I was internally quite indignant at her complaints that destiny had let her down. I wanted to give her a good shake and say this is your destiny! This child is a beautiful soul and you were meant to be his mother; this miracle we call life is about so much more than Little League or Boy Scouts!

And then I did that thing we moms sometimes get brave enough to do… I went to that sometimes dark corner of my spirit where I keep The Truth safely guarded. I opened my mind to how she was feeling, and while I cannot relate to her sentiments at this point in my journey… I allowed myself to understand the roots of her disappointment. And those roots are showing - in places like Disney Land. Now I’m no conspiracy theorist, and I’m not being literal in my blame of the Disney behemoth. But I am being real. Disney is the embodiment of a culture that promulgates standards of ‘normal’ and ‘perfect’ that are completely unattainable for that woman’s autistic child, a culture that so narrowly defined her role as “mother” based on Little League games and Boy Scout meetings, that set her up to envision a life that was based on someone else’s stereotype, and now – the inevitable result: lasting disappointment.

I emphasize lasting because I can’t really imagine any parent not feeling some measure of disappointment when they first receive news of a significant developmental diagnosis. It’s a very specific brand of ‘disappointment’, unique to parenthood. And if we are honest with ourselves, if I am brave enough to share a little of that Truth we all keep somewhere deep inside, I think we need to admit that it comes from expectations which have nothing to do with who our child is, and everything to do with who we envisioned they would be.

Despite our best intentions to love unconditionally from the moment of our child’s conception… we are products of a culture that values princesses and knights in shining armor, Mileys and Mouseketeers. And so, it becomes almost impossible to remain completely untouched by the Disney Effect. Disney, who takes the naturally sweet beauty of human diversity and, deeming it unpalatable, soaks it in artificial colours and flavours until everyone looks like the same brand of lollipop. I like Licorice Allsorts – where are all the Licorice Allsorts??? Would they hire an autistic Mouseketeer? Are stimming and perseverations welcome in the Mickey Mouse Clubhouse? Is Disney a cultural icon that I can imagine embracing and reflecting publicly my son’s neurodiversity? I think Porky Pigs will fly before we see that day.

And so having come to terms with my inner Truth about the cultural expectations I held for my son, and how they had everything to do with my own inadequacies as a mother, and nothing whatsoever to do with his as a child… I return to the mother who was drowning in a lake of lasting disappointments. Allowing that otherwise fleeting sense of disappointment to persevere, to persist, to fester? That’s not the kind of ride I want to spend my life on. That’s where I get off the perpetual merry-go-round of "what ifs" and "why me’s” and head straight for the roller coaster of acceptance, advocacy, passion, and peace.

And maybe, just maybe... if an obnoxious little cartoon rodent can net $35 Billion, then perhaps flying pigs are not such a lost cause after all.