Sunday, December 27, 2009

whose genes do you blame?

We watch each other slyly, hubby and I. We note the family issues. Got a history in the cupboard of depression? Is that aunt acting weird? When you're told it's genetic, you spend a lot of time filing all the partner's misdemeanours away in the 'autism' box.

Especially males, poor creatures -- autism parents love to trot out the 'extreme male' theory, and laugh at hubby's probable autism. Oh gee, does your husband do that? Yes, mine does too! Autism! (Like an ugly baby, everyone chucking its chin, its faults making them even fonder.) At parent get-togethers everyone seems okay with the idea that males are on the spectrum. I wonder if this is just a female bonding kind of thing? Or are the males doing the same sort of slander elsewhere? You know, I kind of hope so, because the world would be a thoroughly depressing place if the 'extreme male' theory were true.

But even if I don't engage in 'my husband is autistic' feminine bonding, I can admit to having done worse. I've secretly blamed my partner for our girl's predicament. In fact, it was so secret, I didn't even consciously admit it to myself; I just resented him quietly, without thinking it through. If we hadn't bought that pesticide ridden house (he does love the old fashioned country charm). If only he'd bothered to find out he had a nephew with autism. If only he'd been better at eye contact (not sure what that would've got me, but the unconscious mind doesn't worry about logic). If only I'd known the symptoms of mild aspergers before I'd decided to have kids.

Of course, in the light of day I saw that it made no sense to single my partner out; practically everyone we knew displayed some signs of autism, to some degree. (Though this doesn't necessarily point to genes: everyone I know is vaccinated; most people use or accept pesticides.) Trouble is, if you have a child with autism, the difference is you collate these signs. They count toward the picture of its being genetic. Because of this weight of apparent evidence, it takes a pretty rational mind to spot the conundrum that, if autism is genetic, offspring shouldn't display far worse symptoms than the parents, and numbers shouldn't be escalating (a fact you have to go to the Department of Education to find out, since the Health bureaucrats are studiously not counting).

Fortunately it's fairly easy to step off the guilt bandwagon. Even if a syndrome is largely genetic, it makes no sense to blame the ancestors. More likely, their genes worked in certain environments that no longer apply now. Unfortunately the modern western environment is a neochemical cocktail, so we'd never know to what degree these 'genetic' syndromes might never have existed.

So even if the hubby of the piece is slightly aspergersy, don't blame him (even unconsciously) for what's probably in your genes too. It may be that our environments are simply too ubiquitously affected for most of us to cope without some degree of damage.

Genes or toxins, something causes autism.

Thursday, December 3, 2009

playground antics

Ha! Victory!
Of sorts...
We've been having a major tussle with a school whose special class accepted Milli. Actually they didn't accept her at all.
An hour a day was all the teacher wanted with Milli in her class. Weeks later, after pressure from us, she put it up to three and a half hours, but there was no plan to increase this to a full day.
The trouble is, this teacher's class is very 'normal' (or normalised). What a pretty little classroom! Six children sit in a neat line and watch the teacher diligently for cues. They can read and write. They can speak. Not only does Milli not speak or seem to understand language (that is, conventionally seem — there is a lot of evidence that she understands a lot but can't indicate so), she enjoys ripping up paper and destroying ornaments.
But still, it's the job of these classes to cater for all degrees of disability... Or so the policy statements pretend.
This teacher made it abundantly clear how annoyed she was by Milli's presence. Everything was phrased as being 'for Milli's benefit', but the only accommodations made for Milli were quite grudging ones, accompanied by a clicked tongue.
I kept being asked if I was thinking of toilet training her at all? On the second or third day a form was thrust in front of me to sign applying for a different school — 'Don't worry about the details,' the teacher said hastily, 'I'll fill them in for you.' It was very much 'Here's your hat — what's your hurry?'
The teacher was occasionally quite frank about her view of things. She told me that if she extended extra support to Milli, her other children would lose out. While true, it wasn't until I got home that I realised the subtext: it's right to apply more care to less disabled children, because being closer to normal means that the extra effort will be rewarded.
It's hardly fair that the entry of my child should result in a net loss for others — I appreciate how other parents might feel. Yet at the same time this attitude seemed to leave Milli at the very bottom of a ladder that she couldn't possibly climb. How could she ever gain entry to this privileged realm?
At this point, a letter came in the mail responding to our application to the disability-dedicated school, refusing Milli a place.
At this point, I cracked.
I rang DADHC (aging, health and disability are melted together in the same fiscal pot) in tears. As usual, Milli's case worker was away and unlikely to return my call, so I ignored the request to leave a message and demanded to speak to a duty officer. I debated with her and myself whether it was time to give Milli up to DOCS (community services), in the hope that she might receive better care and tuition through some fostered arrangement (foster carers are quite well supported, as I understand it). I rang the education department letter-signer (the one who had notified us of the failure of our application to the disability school) and explained the situation — amazingly, he not only understood Milli's plight at once, but guessed the name of the teacher involved. He said he would follow it up. The DADHC worker had also said that she wouldn't let the matter drop. I'd heard that before, but it turned out both she and the education department fellow were the most effective people I could have approached.
All this took place on a Friday. By Monday morning the following had happened:
- the dedicated disability school offered her a place starting next year; and
- the local school agreed to take Milli's education seriously, and allow her in for a full day until the end of term.
So here we are... Two feet up on the ladder, and climbing.
Incidentally, while all the above was going on, Milli's eardrum burst, revealing a nasty underlying middle ear infection, which has now been treated. Heaven only knows how long she's been in pain, because she couldn't give us any indication of what was wrong.
For the moment, at least, things are not only stable but looking up. And now, at least, I have a schedule I might be able to work by — after all, families in our situation usually have mortgages and bills as well. But the overall degree of difficulty in our lives has just got a little bit less.
Something causes autism.