I was a little nervous ahead of my presentation to the Autism New Zealand conference on Saturday. I wasn't sure who the audience would be or what they'd want, and it took me a couple of days to nut out a speech based around video clips, including some from an interview with my son that we shot the week before.
In the end, it went pretty, and I think people appreciated seeing and hearing something different and direct. Ironically, where it nearly went off the rails was when I talked about Finn Higgins and rendered myself gulping and speechless with emotion.
Like most of us who enjoyed his writing here, I never met Finn in person, but on the basis of our short correspondence, I saw him as an example of what my own son could become; much as Finn recognised parallels between his own life and what I'd written about our struggle with the education system on Leo's behalf. The sadness of what happened to Finn, and the way he was let down by the system, hit me hard as I stood up there, because it felt personal.
I had been drawing the audience's attention to a small stack of A4 sheets in an adjacent room, entitled 'Finn's Story'. It is the work of Finn's mother, Dianne Standen, and it is important.
With Dianne's permission, I've published a slightly edited version of Finn's Story on the Humans blog. I'll follow that with Dianne's own story in a couple of days.
The conference was attended by specialists, educators, carers, parents, and of course people on the spectrum themselves (including the lovely Matt Frost of CSS Disability Action, who can come back and post on Humans any time he likes). I sensed that some people were carrying a heavy load. On the other hand, there was often humour: part of talking about autism is the in-joke.
I met Rachel Eady, whose battle to provide loving care for her brother Jonathan was covered in a fine story by Chris Barton in the Herald earlier this year. She had set up a small display with pictures and information about her brother, as the same table where Finn's Story was placed. It looks like she's not far off being officially granted care of her brother, but it remains a scandal that it's been too hard.
Our understanding of ASD conditions has advanced hugely in the past 15 years; unfortunately, the system is still catching up. It's by telling these stories that we make that happen.
PS: I finally worked out what do to with the Wordpress Visual Editor, which has seemed to make posting to Humans inordinately difficult -- turn the bloody thing off. Couldn’t someone have told me that sooner?