Wednesday, June 15, 2011

Back among the gene pool...

We're back in my home town this week for a short break, and it's lovely.

It's lovely to see that Billy is able to be nice to his Nana. It's lovely to see an 83 year old woman open to understanding autism (when her every instinct is to say, 'why are these kids so rude?') and a 7 year old sound sensitive boy understanding why he has to talk louder sometimes. It's lovely to catch up with old friends, even if I'm carrying around a bunch of guilt for all the old friends I am not finding the time to catch up with...

As always, though, there's an autism theme to the trip.

There's an arm of the autism community, and a headless torso of the wider community that will insist the only reason there are more autistic kids is because there are more autistic kids being diagnosed. That doctors are cleverer (ooooohkay), and teachers are cleverer (yeeeeeaaaah) and that these kids have existed forever, they just flew under the radar.


I'm a small sample, I'll admit. Though we are a big Irish Catholic family, so technically, I'm not really as small as all that. I'm not a study, and there's no control and no-one's documenting systematically. I'm not repeatable (thankfully), and I can't even claim reliability since the senior brain kicked in.

But here's what I've learned in my hometown induced analysis of autism statistics.

There are many, many more autistic kids than there were thirty years ago.

There are three in my immediate family. There are a few in my extended family. Of my school friends, there are five with stunningly beautiful fully diagnosed ASD kids. Of my siblings' school-friends, there are four ASD kids. Of the kids I grew up with, there are three offspring with ASD diagnoses.

Back in my hometown, I do not believe there was an environmental insult of grave Chernobyl-type proportions. I do not remember an outbreak of some debilitating disease that could have impacted so heavily on our kids biology, neurology or any other -ology. I do not recall a generation of distant mothering or obsessive kids influencing each other to be odder than normal.

I grew up in a fairly standard city, in a fairly standard state, in a fairly standard country. Whatever that means.

In case I haven't said it clearly before, I believe there is more autism around. Full stop. Period (which really means something else, reproductively, in Australia... maybe everywhere else too). End of story.

There are no autistic people older than me in my family, although there are quite a few geniuses, socially inept folk and vast collections of obscure objects. These things appear in different, discrete individuals. These individuals have definitely bred with slightly quirky individuals, and compressed the quirk, and therein lies part of the genetic ASD quotient, for sure.

However, from zero in one generation to fifteen in the next... that's a hell of a leap.

For the uninitiated, it's worth making something clear about autistic 'traits'.

We are not talking about something that makes you a little odd - not pen clicking or cheek chewing. We are not talking about liking sci-fi or video games to the exclusion of other (more physical) pursuits. We are not talking about being a bit shy, or wary of crowds... though all of these things can, indeed form a part of the picture of an autistic person's life.

We are talking about challenges that frame and often debilitate, how someone sees themselves and how they are capable of interacting with the world. We are talking about skills and abilities that are missing, disordered or un-masterable.  We are talking about a totally unique way of operating. Not something you will 'get over', not something you will 'get used to' and be able to change behaviour, not something you are 'making up' for convenience or type A style dominance.

Therapy (in my mind at least) is there to open the paths of self awareness and raising the possibilities of self regulation. It's not about normalising. It's not about changing. It's about managing, understanding, being actively willing and practically able. Not about aiming for same, but working on happy.

I was never a social butterfly. I was prone to a bit of encyclopaedia reading. I was able to recite long volumes of meaningless prose. Am I autistic? No. Am I a part of the make up of my son's autism? Absolutely. Does that deny the validity of his diagnosis or the multitude of diagnoses around him? No way.

It's popular language right now, but for what it's worth I believe my child is one of many canaries in the coalmine-of-now. I do not know what kicked us into this state, but I do believe we are in a 'state' (and I say that with all my emergent old lady passion). As a generation, we are having a 'turn'. We are in trouble.

I love my boy more than anything on this planet, don't get me wrong. He is awesome, and is (thankfully) able in many ways. He is (thankfully) fortunate in many ways. However, if he was pushing me down a hill in my wheelchair in 30 years time, and a baby cried or a dog barked, I would be a goner. It's a sobering thought, really.

If that is the ending to my story, I guess it's an interesting way to go. It's a story Billy can tell his grandchildren. If, indeed he ever reaches the point where he can have children. Or a partner. Or a relationship.

I guess for now, it would be sensible for us to make sure Billy's not in control of Nana's perambulation, no matter how much they understand each other.

Unless I want another interesting story to tell.


Di said...

Yes, the numbers have risen! When Nick was a little boy I was very alone.... (no access to internet then!!!).

Now, I know many parents (who live in the same city as me) who have children with asd under the age of 8! As for the wee tots of 3 and 4... I hear of more and more every week!


Ro said...

The numbers are growing in large leaps and bounds.
It's a puzzle and I'm wondering about my future wheelchair wanderings, too!

K- floortime lite mama said...

This is so very very true
I am still amazed by all the people who keep saying its all better diagnosis