Thanks, Janna. I've used the Autism NSW site, especially for contacting other families for my campaign.
I was intrigued - they mention a quote by Shannon Noll - he was runner-up in the first "Australian Idol" a few years ago. I have a friend who was in the final 40 the same year, she got to know them all in that time. Shannon Noll has gone on to make a big name for himself here, I didn't know he had also surfaced above the radar in the US as well. he writes a lot of his stuff including a great song about his father "Now I Run" in which he describes how he was only a boy when his father died but now he sees him every time he looks in the mirror. "I am my father's son. He taught me to walk - now I run."
This means even more, because Shannon's own son is now the same age he was when his father was killed by an overturning tractor. Do hunt for the song lyrics if you can. Good stuff.
But I'm getting off topic here.
Australia is a spread-out country. If you live outside the capital cities you lose physical access to a lot of support networks. There is online support and support over the phone. Support in schools. But the personal touch is hard to come by. Even in Sydney - the place is too big, too spread out, to get the help we need. We have to do it ourselves. To drive across Sydney takes at least 3 hours at the best of times. If we include Wollongong and Newcastle, satellite cities to the south and north respectively, you can at least double it. Autism NSW (now called ASPECT) is a smaller organisation than people think. They do their best but they are located in a tiny cul-de-sac area on Sydney's Northern Beaches area. We're south. The population "centre of gravity" is west. The majority of Sydney-siders are just too far away geographically to be able to get to any real support. ASPECT will send their staff out to assess and advise ($100 a time - cheap, if you consider the mileage) but it takes time to get that far on the waiting list and they can't do much more. And yet EVERY expert we saw, said "It's good you now have a diagnosis - ASPECT will look after your child from here on."
No, they won't. They're a small charity, who should not be having to do the work of the health care system, the welfare system and the education system, all rolled into one.
We form local, informal support networks and occasionally get an expert from ASPECT to advise us, run a course, drop in or whatever. But we've learnt that we have to do a lot ourselves. Still, when you're in a group, even if it's one you run yourself, there is more support. A lot more.
This website looks like one such group. Looking good!