Wednesday, March 21, 2012

The numbers game...

When I was Billy's age, I got the impression all adults were a bit... unfair. It seemed like they had the keys to the kingdom and I was on the wrong side of the gate.

It was the 70s, and adults seemed to rule the world. I may be remembering an episode of The Rockford Files and not my actual life, but there seemed to be a bunch of good natured socialisation going on wherever I looked. People's parents in synthetic walk shorts and nylon kaftans smoking and drinking and talking about stuff that seemed important but inaccessible.

They made me want to be a grown up. Not because of their smoking and drinking, or their kaftans, but because they seemed to be onto something life-wise that I was denied, while I wrote stories and wore a school uniform. They seemed in control, to me. In a slightly unhealthy, unsanitary, petrochemically kind of way.

So, it has surprised me slightly to learn that they must also have been complete arseholes.


Well, if the autism skeptics (like climate change skeptics, but even better at ignoring the bleeding obvious)  are correct, then grown ups in the 70s were really good at ignoring their kids obvious struggles and choosing to keep on smoking.

The rapid acceleration in autism diagnoses, which will be 'refreshed' by the CDC any day now, proves that my friends' parents (and maybe even mine) were monsters. 

The skeptics will tell you that autistic people have been around forever. That there is no actual increase in kids diagnosed, we just live in a more aware age. Thanks to cleverer doctors, eagle eyed and sensitive teachers and overly anxious helicopter Gen X parents, we are finding autism and naming it such, much more easily these days. 

We should feel lucky to have these clever folk around us, to feed our ever growing obsession with Google Doctoring, and guide us to the safe arms of the medical community. After all, they didn't exist for our poor parents. All they had was cigarettes and pool parties.

We should feel bad for our poor deluded parents generation, and perhaps for the parents before them too. They didn't have people outside of their own homes and hearts to TELL them there was a problem with their children. After all, it's not like they could work it out for themselves, they were too busy getting bombed and driving home afterwards. Probably not wearing seat belts (just another reason to believe they were all monsters).

I am going to go back to my home town, and drive around to all my friends parents and tell them they should be ashamed of themselves. I'm going to tell them it's reprehensible to ignore your child when they can't communicate effectively, when they can't handle the world, when they are clearly sick. I'm going to give them back all the soft drinks and games of Twister and bonfires they provided for me. I don't want their stinking good memories. I want them to stand up, like I've had to and face their kids issues. Cos, they had them. They must have, because so many of my friends kids do. So many of my family's kids do. 

I know those parents, even my parents didn't have the benefit of today's highly evolved medical and educational professionals, but seriously, if 1 in 100 (give or take) kids have always had autism then someone was ignoring someone's needs. Too many martinis, not enough attention to detail. Too many Sobranies and Silk Cuts, not enough good responsible well trained teachers and doctors. 

Parents in the past were all idiots. Right?

Wrong. So completely wrong, I want to go back and delete all that nonsense (except I like the party scenes, a lot).

I'm sure there were crap parents in the past, and I am sure there will be crap parents in the future. I'm sure there are crap parents among the autism community right now. I have way too many truly crap moments, when all I want is to be one of the characters in Reality Bites, and smoke cigarettes on funky looking rooftops.

The roots of autism are not principally in parenting styles. They are not in a teacher's vigilance. They are not in doctors' offices.

The insidious tendrils of autism lie in the perceptual space between the skin of a mother and her non-sleeping baby. They wrap themselves around the sobs of a dysregulated toddler and the father trying to make a graceful exit from the scrutiny of the playground. They reach out and stop a tiny hand from waving at grandma, a tiny finger from pointing at the airplane, a tiny mouth from forming words.

As the spidery autism webs take hold, I believe there are very few parents who do not sense their stricture. Whether the tightening has been there since birth, or it grew sometime soon after, it is impossible to ignore. You can see it, you can feel it, and though you may confer with doctors and teachers, you are told (more often than not) that you are overly anxious or that you should 'wait and see'.

Autism is not rational. Autism is visceral. I do not know one autism parent who did not 'know' (in an oogedey boogedy way) that something was going on with their child. 

They did not need a heads up from a teacher. They did not need to be taken aside by a local doctor. They had their own concerns, and were (more likely than not) acting on those concerns and being brushed aside.

They looked into their kids eyes (and had them avoid looking back). They hugged their kids close (and had them either cling like a desperate koala or resist violently). They watched as their kids slept (or didn't sleep as the case may be). That's how we knew something was up.

That's how so many of us knew something was up.

I know I've said this before but I'm going to say it again.

I did most of my growing up in a pretty normal suburb, of a pretty normal city, in a pretty normal state of Australia. I do not have any older members of my family with an autism diagnosis, or impairments significant enough to be considered un-diagnosed ASD. I did not have any friends with autistic siblings/cousins/older relatives/friends. Billy is not the only autistic child among my mother's grandchildren. I have three friends (that I know of) from primary school with children on the spectrum. I have ten friends from high school (again, that I know of) with children on the spectrum. I have five friends from my professional life with kids on the spectrum.

It's anecdotal, but it's real. 

These are not the friends I have made in autism world. These are folk I knew before I knew what autism was. We did not live in some Erin Brokovich style environmental disaster zone (that we know of). We did not suffer a plague of DNA altering proportions. We were not poor, nor were we rich. We just were.

Almost everyone I have met since autism became our lives has a similar story. No autism, or minimal autism like characteristics in the family and them... whammo.

This is a generation of disability that defies the cleverness of doctors, teachers and most of us parents (see every single post in this blog for evidence of that). It is unprecedented. It is debilitating. It is life-changing. It is going to make for a hell of a next generation.

If one more person says, with a caring tone, 'Oh Billy I hate noise too. I know how you feel'... I will invite them to live with us. To see and feel what it is to switch from having a great day, to wanting your pet dog to die because he made a natural dog noise. I'll invite them to share a day with any one of my friends families - locked in to prevent escapes, bruised by their own children's' fears of haircuts and nail clippings, sleep deprived from seizure vigilance.

We are loving and devoted parents. We are not suffering from Munchausens by proxy, helicopter parenting syndrome, overly dramatic mummyness, or any other disorder invented to deflect from the tragedy that is unfolding around us all. And I don't say tragedy to make anyone feel sorry for us, or to say that anyone autistic is tragic... I say tragic because we are ignoring the seriousness of the numbers game.

There are more autistic kids than there were in the days of synthetic kaftans. There are probably fewer open-minded doctors and teachers. There are more, many many more desperate families drowning in a pool of lacking. Little proper care, little future planning, little medical acknowledgement,  little respite, little appropriate education, little political action.

And this is just my life. 

I know 100s, if not 1000s more in the same boat. Shall we all stand back and watch the ripples in the pool grow into a tsunami? It will, because the need isn't going away. It is growing, every day.

I worry for my child, and I worry for his autistic peers. I worry how they will live independently when they um... won't be able to. If the numbers stalled, today, we would still be looking at 1 in 100 people in supported community based care in 10 years time...? And that's just the autistic people... Now that's a prospect.

Yup, all these autistic folk have been around forever. 

Unless you believe a love of polyester is an autistic perseveration, that last sentence is a crock of french onion dip.

1 comment:

Dana Meijler said...

Great post Valerie, thank you.

I agree with you but I do think some proportion of the increased numbers is due to better recognition, evaluation and diagnosis. 20-30 years ago only the most severely autistic were diagnosed. My daughter would have been considered odd or weird even 20 years ago and never would have been evaluated, much less diagnosed. Most that were diagnosed were sent to live in institutions, immediately written off or misdiagnosed as mentally retarded and therefore not able to achieve anything. Thankfully now many of those kids get a lot of help.

I worry about the future too, how society will deal with our growing numbers and what is to become of our kids?