Valerie Foley

In lieu of absolutely nothing…

In Action on February 4, 2013 at 11:31 am

It saddens me beyond almost anything that autism could easily become an un-solveable issue.

For some in the autism community, the resounding response to that statement would be, hooray. It’s not an issue that needs solving, it’s just something that needs accepting. Open your minds and move on.

For many others, it’s a huge issue and it’s getting huger.

Every day, in my life, there are a series of discussion about school and health and hospitals and doctors and teachers and therapy and medication and side effects and… and… and…

Rest assured, for every study that says (or actually doesn’t say but that was a post last week) kids grow out of autism, there’s scores of children NOT growing out of it, and many many more growing into it.

And we are not doing a damned thing about changing it.

Sure there are parents doing a brilliant job – supporting their kids, fighting for change, provoking thought in a brilliant way. Sure there are professionals doing the best they can with limited resources. Sure, there are autistic folk living the best lives they can some achieving incredible things publicly, some moving mountains that other people don’t even see as they get through their day.

But…

Where are the governments? Where are the policy makers? Where are the industry leaders?

Who is asking why and what and then signing off on following up their answer?

Who is acknowledging that we are not doing enough and committing to do better?

Who is actually actively listening?

Autism is not a choice. It’s not something that anyone assumes. It’s something that is. There’s no flexibility around that. We can’t just stop dealing with it, no matter how much we accept it.

As people who live lives with this disability, we don’t have the choice to disengage financially, practically or emotionally. Whether as a carer or as a person with autism, life IS about the issues. We cannot (and will not) stop dealing with the issues because we can’t. We have to maintain health, try to learn, to get around our cities, try to provide for the future… to live.

So, when pressure comes either from within the factions of the autism community (‘stop talking about autism as a disease, I don’t have a disease‘ or ‘autism is just a natural variant of normal and not something that needs fixing‘) or from outside (‘stop asking why and just accept that it is‘, or ‘you are just angry and want to blame someone‘, or ‘there’s no evidence of what you claim, end of story‘) I sigh… because it changes nothing.

Worse, that pressure is designed to change nothing.

And most families I know, living with autism would say, if we change nothing, we are in a very grave situation indeed.

In Australia right now, we have children being denied medical supplies, being under-educated, being under diagnosed and under serviced. We have people in varying stages of crisis, with no safety net. And there’s lots of them. More and more every day.

Yet, people try to say autism not a problem, that it’s an inflated construct.

Look around you. Go to a school. Talk to a doctor or a nurse. Open your eyes at a zoo or a theme park. Autism is a huge, present, obvious, increasing issue.

If the present is challenging, imagine what the future is going to be like.

The more we normalize this game, the less we support it, financially and politically. It may solve the storm in a tea cup now, but in 40 years time, when my ‘just-slightly-left-of-centre-calm-down-mum’ child has a fatal seizure because his autism means he can’t manage his own epilepsy medication, and there’s zero social service provision for him because autism is NOT an issue… we’ll have a whole new storm on our hands. Or will we…? Do we even care enough?

It seems to me, trudging forward wearing puzzle pieces and lighting things up blue is a colourful diversion from the reality. Sure, some days we need diversions. Why not?

But most days, we need so so so much more.

One in 62.5 school aged children in Australia. From one in 150 not very long ago.

It’s not getting any easier.

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