Tuesday, November 29, 2011

Is it all real...?

We're back on Terra Australis, finally back in ship shape (jet lag is pretty impressive stuff, we have discovered), and I'm still dipping back into memories of our adventure wondering what was real and what was not.

It's bleeding over into all aspects of our lives.

On a completely fatuous level, I am constantly checking that our excellent, stylish and cheap-as-chips fashion purchases are still in the wardrobe. I'm afraid, having got them so cheaply and from such fabulous places, they will spontaneously combust leaving a pile of cool looking ashes. So far, thankfully, no such carbon has appeared.

On another, more complex, level... over the last week or so, there been a whole new curve to our fairytale ball.

It's a wily beast - the autism spectrum. It's a collective, interpretive diagnosis. To be diagnosed officially, one needs a bunch of folk to observe/document/agree/sign off. It's not an easy process for anyone. Given we are in an unprecedented era of diagnosis (a recent report stated a child is diagnosed with autism in Australia every 7 hours, though this is seen to be a gross underestimate by many locals), it's not just the diagnostic process that's a challenge.

A label of autism is hardly a golden ticket. It is, however, a public acknowledgement that the challenges present at diagnosis are unlikely to disappear completely (despite the carrot of EI funding that evaporates at age 7 in Australia). It's a statement to society at large, that this person will require support throughout their life. Some may need a little, some may need a lot. Some may need money, some may need logistics, some may need services, most will need a bit of everything.

Though there are occasional rumblings of diagnoses being 'handed out' to kids who do not 'have' autism, and allegations that autism is used as a catch all diagnosis for kids who have less specific conditions and yet require support in the education system, I have never seriously (ever) thought that people would genuinely, appropriate autism for their own nefarious ends.

Yet, for want of appropriate services, or want of attention, or want of a community (who knows) it seems like people will. One one level, good luck. It's in the news. It's an emergent field. There are a lot of support systems in place for autistic people and their families. If people truly cannot find their spot, or truly need interaction with therapeutic and social services, then... I guess... do what you have to do.

Here's the challenge, though.

The autism community is held together with chewing gum, string and trust. We look to each other for honesty, for guidance and for the odd drop of alcohol. We do not necessarily have a gigantic pool of reliable evidence and consistent professionals behind us. As much as we'd like to be able to look over our shoulder and find a musty library full of validated, repeatable research to back up our instincts and experience, it's not there (yet). What we have is each other - similar people on a similar journey with their hearts similarly open to the needs of our fellow travellers.

Maybe from the outside, this stuff looks attractive. There are a lot of smily faces, and LOLs and exclamations of preciousness in our kids. There are a lot of virtual places to be heard. There are a lots of cups of tea.

It is the secret bonus of living a life with autism - the generally stellar standard of the folk who share that life with you and your family. It's the wind beneath our wings, the carbs in our lunchbox, the air in our balloons.

Until, it proves to be stale, empty or smelling like poo.

It doesn't happen often, but when a toxic dust storm blows through a bonded group of folks in shared need, it leaves a nasty taste and a bunch of rattled personalities in its wake.

Sometimes it's a new parent in denial, lashing out at the possible identification of their child as actually autistic (insulting long diagnosed families with the revulsion in their voices). Other times it's an inflated ego, taking the 'moment' a little too seriously. Occasionally, it's a line of some kind that just shouldn't have been crossed. No matter what, it stinks.

I had forgotten how vulnerable we can be. I am rarely focussed on the challenges of the parents (we signed up when we threw out the birth control, in my mind, what you get is what you get). This week I realised that the grown ups in this game are betting on a house of cards we have built together. When the occasional dangerous wild card is revealed, it destabilises the whole structure - and we have to build it again.

We can, and we will, because we must. It is not possible to walk this path without compadres. Well, maybe it's possible, but not advisable. As I learned in Yosemite National Park AKA Heaven on Earth, if your friend knows the size and sole pattern of your shoes, someone can find you if you get lost.

OK, that's only vaguely relevant, but along with the video of the bear peeling car doors open, it was my favourite bit of Yosemite info.

Really, what I want to say is... the future will be full of genuinely autistic folk (more than now), and we are not really doing a bang-up job of caring for them in the present. Please don't randomly bugger it up now. It's already like catching falling jelly shots. It doesn't need to be any messier.

1 comment:

Lisa said...

Damn. There's an elephant between them there lines and metaphors.

On a lighter note, my word verification is silly - 'PSYLLY'