Tuesday, December 21, 2010

Suicidal tendencies...

I just read about a woman who killed herself after feeling she'd failed her autistic child for not preventing autism or finding useful treatments.

I'm not a suicidal person. In fact, I quite enjoy being here for the next challenge. Life may be hard, but it's always interesting. But I say that now, after the worst is already long behind us and Milli continues to improve.

Ask me how I was when Milli was enduring 18 months of crashing deterioration, couldn't eat and couldn't recognise people.

Ask me how I felt when doctors offered no more hope than that Early Intervention may help her learn to socialise, while our girl couldn't even eat or drink.

Ask me how I felt when paediatricians assessed her at a glance and spent more time warning us about cat droppings in schoolyard sandpits than taking detailed observations and measurements. And no-one ever suggested an ECG.

Ask me how I felt when our nights were a ragged sleepless nightmare and we were on our own. When grandparents took no interest because they simply had no idea what autism was, or why our child had it, or what they should do. When our girl went four days without eating or drinking. When my partner started treating me like a madwoman for researching on the internet. When I held this grey, limp, dying child in my arms and knew I had to do something drastic, but had no support to do so.

Ask me how I felt when doctors said it was genetic, but nobody in my family or my partner's family in any generation above this one had autism.

I felt responsible.

A woman I don't know took her life, perhaps for a similar reason. She seems to have felt responsible for the child, for letting the child down.

But autism isn't about parenting or even about individuals (including their genes). If it was, it wouldn't be global and escalating. If it was, the gene responsible (not a gamut of 'suspects' so varied that a recent expert suggested all families have their own genetic autism variant) would have been found.

Autism is about large-scale decisions, and how they affect the vulnerable.

And the only way to fight that is to make equally large-scale change. Which is why, sadly, I suspect the autism rate will continue to climb.

Something causes autism!

1 comment:

  1. heart wrenching post! Thankyou for expressing this. xo