Thanks Hilary for this profile of a real pioneer - much appreciated.
Thanks Jason. It is often easy to overlook the work of those who have helped ease the way for those who follow. In the disability world, they are usually quite self-effacing and not into self-promotion. We are also hopeless at recognising and recording our history.
World Autism Day webcast from the United Nations. We have come a long way since Marion's first battles in the 1960s.
Thanks Jason. It is often easy to overlook the work of those who have helped ease the way for those who follow.
As I've written before, our family owes a lot to Barb Kirby, who founded O.A.S.I.S, the first family-driven Asperger resource. She was only three or four years ahead of us, but what she did made a huge difference when we got our diagnosis. Everything else on the early web was cold and clinical – her site made sense.
It was International Autism Awareness day this week and this morning Autism NZ hosted a parliamentary breakfast to mark it. The Minister, Nicky Wagner, gave a standard speech about how much the government is doing via programmes like Enabling Good Lives (only two sites) and a disability employment programme in Christchurch. But the mother of two boys, followed by the chairperson of the Autism NZ board spoke about the realities including the lack of local statistics, services and the daily struggles, as well as rewards. The latest overseas estimated prevalence of 1 in 58 people on the spectrum shocked some (and we have hardly investigated the aging population at all).
But what was heartening was the large group of the people who attended, which was bigger than any previous years . Good to see Chai Chua from the MoH there, and senior representatives from many government departments including police, as well as numerous MPs from various parties. Lots of networking. But as the board chair says, we are better at autism awareness these days but celebration is still a way off.
Meanwhile a young man with autism, bored by the speeches, kept it real by quietly roaming around the hall.
Overall, taking an historical perspective informed by my numerous talks over the years with Marion Bruce, we are making some progress.