Valerie Foley

I have no evidence

In Action, Perceptions, Research on April 8, 2013 at 2:07 am

One of the most insidious weapons in the war against medical and social respect for autism is the word ‘evidence’.

It has been very cleverly twisted to mean, ‘anything anyone but the most popular of scientists say is bunkum.’ It ignores the vast accumulating and changing breadth of knowledge that is science. It presumes that ‘truth’ is something that is and can never change.

It’s incredibly childish, and way too close to the energy behind religious zealotry for my mind. More than that, it is deeply unhelpful in the situation we are in now.

To be clear, the situation I am talking about is an epidemic of a behavioural diagnosis, that was previously rare but has somehow become genetic, and has spectacularly compounded in less than 25 years.

You know… ‘autism‘.

Instead of evidence being the thing that helps us solve it, evidence has become the thing that reinforces the idea that the situation is out of our control.

Are we that stupid/complacent/easy to placate?

It seems we are.

To compound the issue, rather than demanding pin point, ruthless, specific science, we are happy to be seduced by hope based narratives that gain their unquestioned credibility because they have been lived by well loved, and rightly respected adults with autism.

With all respect to those people (and I speak specifically of Temple Grandin and John Elder Robison here), who themselves demand science turn its beady eye on the epidemic, I firmly believe we as parents of autistic people are fools if we grasp the fronds of hope as an alternative to donning the uniform of action.

And here’s why.

Autism, in its rapid rise to epidemic status, continues to morph and change. There are more and more people, with more and varied manifestations of the condition. Children with autism now, are not the same as children with autism in 1960 (plucking a date out of the air) – not medically, not cognitively, not behaviourally, not in functioning level, not in prognosis. And there are a LOT more of them.

While the doctors and scientists argue about which evidence is the most reliable, and adults with autism insist that acceptance will do the trick, more and more children join the fold. A fold that has no mappable future – no infrastructure for housing, healthcare, employment, financial support.

We don’t even know what autism is, but we think it’s OK to just keep letting kids ‘get’ it.

We don’t know how to stop it, but we think it’s OK to tell parents there is nothing they can do.

We don’t have an explanation for the rise in numbers, but we think it’s OK to surge forward to a future where at least more than 2% of the population will need lifelong support (that doesn’t currently exist) without any social change to enact that support.

We take solace from the muddy water, because it stops us from accepting its murky depths.

Seriously, are we that stupid?

It feels much better to be told we should just believe in our kids and magic pixies of ability will carry them into middle age, I am sure. I don’t know about anyone else, but I do know my own throat constricts for a fair proportion of every day when I try to get a handle on what the hell will happen to my gorgeous son when we are no longer around.

Where will he live? How will he get money? Who will help him with the medication that controls his seizures and the nutrition that helps his body to function? How will anyone know if he is not OK?

His diagnosis is ‘high functioning autism’, a confection designed to convince parents that it’s not so bad after all. He cannot control his bowels, he needs daily medication, he is unable to plan for or accommodate change, if we asked him to walk five minutes around the corner, he would be lost as soon as he lost sight of his house or us… but he’s high functioning – AKA he can talk.

He qualifies for no adult support at this point, hell, he qualifies for no child support. But he’s fine, right? He should be talking about his science fair projects, not rightly acknowledging the profundity of his challenges.

He’s not, because the depth of his disability precludes that kind of talk. He is like many many other autistic kids, who are rapidly becoming adults. Not adults like Temple Grandin and John Elder Robison, brilliant as they are and as much as the rhetoric had me believe he would be. Adults like the ones NT kids avoid in the streets because they are freaking out about which way is home.

I have no evidence he will be OK, and hoping he will be is not enough.

We need real understanding, real action, real change – not more candy coated reasons to deny the seriousness of what’s going on.

We need evidence, and I for one don’t think I would be adequately and responsibly parenting if I didn’t start demanding it.

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