Valerie Foley

All these canaries are so lovely…

In Environment, Medical, Perceptions, Research on August 1, 2013 at 5:41 am

Today we spent the morning with a geneticist at a major children’s hospital.

She was lovely, especially to Billy. She asked a lot of questions, wrote a lot of stuff down, listened very carefully, took a lot of photos and measurements and was intensely respectful.

She noted his hypermobility, his dysmorphic features, his medical diagnoses and reactions to medications and interventions. She heard it all, saw it all, acknowledged it all, even restrained herself from slagging off our dietary/lifestyle interventions.

All good.

The wrap up?

There’s no doubt in the world Billy is different from a typically developing child of his age. There’s no doubt he’s different to other kids with autism too. There’s no chance in 2013 that we can understand why.

She suggested a pencil grip (yeah, really), some core strength building activity (because seven years of OT has clearly been intensely useful) and a sense of gratitude that he’s not worse.

I made a few attempts to get her to understand that ‘hooray, he can talk’ isn’t going to help him get a job when he’s 18. I tried to light a little ‘this really isn’t right’ fire under her. She took it with more grace than most stethoscope wielders.

Does the last two hours mean anything? Change anything? Help anything?

Nope.

Don’t get me I’m exceptionally thrilled that there’s no obvious genetic syndrome screaming out for attention. I’m very grateful for that fact. It was unlikely that his ‘autism’ had a genetic cause, though the addition of hypermobility, auto-immune disease, GI issues and epilepsy makes a genetic cause slightly more likely. Hence the box ticking appointment.

The question remains, if we rule out genetics, WTF is going on? Chance? Bad luck? Or some deliberate choices we and others made on his behalf that kicked this game of Mousetrap into action?

The blank wall of ‘we don’t know’ is a way too familiar medical view in our lives.

We’re running out of ‘WEs’ to talk to, and there are two reasons why that’s both depressing and frightening.

The first is that the list of ailments in our kid grows, not shrinks, with time.
From hyperacusis, to hypermobility to GI issues to transverse myelitis to epilepsy. No-one medical knows why (bar the fact that some people who share an ‘autism’ dx have some of these things). No-one medical has non-pharmaceutical treatments or treatments that actually heal (rather than mask). No-one knows if anything else is coming. And yet, the impairment in him increases, against all spin- sorry, ‘odds’. The gap between him and his peers widens, and we see clearly he is not alone.

The second is that we live in a medical and political world that has been convinced autism is not a medical condition, with associated causations and solutions.
They have chosen to work on the notion that autism is either (a) severe or (b) magically overcomeable with behavioural training. The wave of autistic kids born in the 2000s kids are heading for adolescence and it’s not gone. The way smaller cohort of 90s births are aging out of school and guess what? It’s not gone. The later in life diagnoses, who managed to get through things that most kids with autism now have no chance of getting through are happily telling us all we should accept autism and leave our kids be. Which would be awesome, if leaving my kid be wouldn’t result in him walking in front of a car, ceasing all defecating activity and wondering what the hell happened to all the food.

Billy is currently a child with a serious disability. On paper, he is nothing of the kind.
‘High-functioning’ autism is not highly rated in the world of disability. He can talk. He is mobile. He has a level of emotional regulation. He’s not violent to himself or others.

He’ll grow up, dodging what ever medical conditions may be ‘lurking in there waiting to come out’ (the words of his neurologist), into a world that thinks he’s just fine thanks very much. He does not qualify for support, he does not have ‘high needs’, he’s just ‘different, not less’.

While we have a medical fraternity that thinks it’s OK to say ‘we don’t know why’, we have politicians who say ‘we don’t need to know why’ and we have a world that says ‘we don’t care why’.

It won’t (I fervently hope) surprise anyone that when it is your child this is happening to, you do not think it’s good enough.

He’s not bleeding from an artery. He doesn’t have cancer. He’s not strapped to a chair. We are incredibly fortunate we do not have to deal with these things currently, as many families do.

What he is, though, is one of almost 3% of our current child population in Australia (and climbing, and it’s no different anywhere else).

What he is, is mysteriously disabled (unlikely genetic, possibly environmentally, possibly preventably, possibly treatably).

What he is, is the canary in the coalmine.

And I adore the canary.

The coalmine… not so much.

The ones who dug the coalmine…? Who manage the coalmine…? Who spin shit about the state of the coalmine…?

They’re the ones I’d like ten minutes with.

They’re the ones who have a responsibility to care about the ‘why’, before there are so many canaries flapping their pretty feathers in their faces,  they’ll have no choice.

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