Friday, April 22, 2011

Thanks autism. Really...

I've been trying to avoid using this blog to flog the book (see right), because it just seems crass.

But this week, I had the privilege of spending time with some of the contributors, who live in the same city as me. We were gathered for an interview with one of Sydney's metro newspapers - The Daily Telegraph. While our kids, again, played together without incident of any kind (there's a whole thesis in why that works so well), we spoke to an extraordinary journalist about our lives, and how they got jammed into the pages of a book.

My point today (if I can come to it quickly) is all about the good stuff that I never, ever anticipated when the 'a' word was first thrown about in my presence.

Here goes.

1. The quality of people on this road.
It's a chicken or egg question, really. Does autism generally hit cool people, or does autism rip your skin off thus making you cool? I seriously have never met such funny, open hearted, focussed, motivated, generous, evolved, flexible, accepting, child centred people in my life. Mothers, fathers, grandparents... almost without exception, people I would quite happily chuck my coat in a muddy puddle for. I feel safe among these people. I feel understood. I feel brave. Most of all, I feel thankful.

2. The joy of the tiny step.
While we all chatted to the extraordinary journalist this week, each one of us had a moment or two where we were lifted by something we saw in our own or each other's children. The spontaneous 'thank you', the constant 'excuse me', the poo in the right place at the right time, the care and compassion of the older kids, the instant companionship the little ones provided for each other... all things that we've hoped for, battled for, wished for - just popping up and being celebrated by all in earshot.

3. The acceptance of quirky.
We've all had those moments where we've thought, 'Ooops, went too far... showed too much of my odd side.' We all have, right? The fun of an autistic gathering is seeing how little anyone cares about revealing your inner quirk. Things that, among NT kids, would elicit giggles (in a nice group) or taunts (in the rest of the world) barely rate a mention. The flapping arms, things spoken in American or English accents (thank you Pokemon and Charlie and Lola), things repeated and repeated and repeated, moments where a child would literally walk away mid-sentence for some processing time... no-one cared, no-one thought it was odd, no-one asked for a reason why, no-one raised a voice or an eyebrow.

4. The power of more than one.
It's no surprise to me I ended up in autism world. I've never been the centre of the social circle. I've always wondered what people who are in that circle know that I don't. This week, and on many other occasions lately, I find myself standing in a much more appealing, oddly shaped circle, listening to people I respect (OK, trying not to talk so much and often failing), feeling proud to be there.

I think the experience of putting this book together has been an extraordinary gift. I don't have all the answers, most of the time I'm struggling to come up with a single cogent one. But... I am immensely heartened by the fact that I am among a population of people who live with, observe, read, manage autism spectrum disorders every day.

We don't have reliable, repeatable data, we have experience. We don't write research papers, we write about our experience. We don't have clinical trials in our houses, we trial experience.

The book brings 60 of those sets of experience together, from across the globe and across socio economics. By standing the stories together, I hope we can see a picture emerging. An anecdotal, and still valid picture of how we came to be here, and how we perceive and handle the journey.

We do not all agree, all the time. We do not have the same story, by any stretch. But we do all share a hope that one day, we will understand much much more about why so many people are in the same position as us.

As much as I love and appreciate the world I am in, and adore my son, and see what incredible skills and perceptions autistic people bring to society at large... I want change. If not for us, then for children to come. If not for us, then for parents of the future. If I can do anything to help that happen, I will move heaven and earth to do it.

Books, songs, blogs... whatever. It's not for everyone, I know, but if I don't use my powers for good, the lapsed catholic in me wonders what evil will emerge.

In the meantime, I'm working on getting poo in the right place at the right time, and for the record, it's not my poo. Yet.

4 comments:

Nicole English said...

Beautifully written

carriemumof2withasd said...

Amazing post by an even more amazing lady :) thank you for giving us and our children a voice!

Zoe said...

LOVE that blogpost. Poo, lapsed catholic, revealing your inner quirk, ...the place that is autism world. Made me laugh and resonated with me even though I'm not catholic or lapsed (though I often feel like both).

Amen to wanting change. Gotta get myself a copy of that book.
Thank you

Dearna said...

I am thankfull to autism for some things but mostly for the people I have met because of it.