I got home to Whimsy Manor about twenty minutes ago. I hastily unpacked one case and left the bigger one for later. I checked that there had been no burglaries, floods or other house-related disasters and poured myself a glass of Chardonnay. Home is wonderful – my space with my pictures and taste, my chaos, my presence and my cat (when I pick him up from cat boarding tomorrow). .I love to come home. But thinking about my home here got me thinking about the concept if home more broadly and I was left thinking that I have come home from another kind of home – the Autism community.
I just spent a week in Melbourne firstly attending an Autism Expo and then the Aspect Autism in Education conference, where I delivered plenary speech on my education journey. I have been advocating around Autism for eleven years. I never really felt all that connected to my community back in 2005. Firstly there were not as many people advocating from the ‘lived experience’ perspective. There were a few Autistic authors but many of them lived overseas and there were only a couple of prominent Autistic people in Australia who I liked but found their success and wisdom a little daunting and intimidating. I spoke at about one conference a year if I was lucky. I had my autobiography which had come out in 2006 but it was definitely a niche market book. What parent wanted to read the story of an Autistic criminal and communist?
Time went on. I didn’t think much about Autism advocacy – firstly because I was busy in my new life of being a public servant and then because I was busy managing my unpleasant mental illness – some kind of schizophrenia which really doesn’t like me and seemed determined to destroy all I was trying to build.
I came out of the worst of the illness after about three years. I had an ally in a beautiful black cat with the official name of Mr Hieronymous Bosch Kitty Purkis the Second (‘Mr Kitty’ to his friends). I met a young man who changed my life. I don’t think he intended to. He was 21 and had a diagnosis of Asperger Syndrome since he was six years old. He was very sheltered and had finished school at the age of fifteen but nobody had ever tried to reengage him with learning. When I told him i was an Autistic author and public servant he didn’t believe me. He actually thought I was lying because apparently Autistic people couldn’t do those things. After meeting this young man I decided I did not want other Autistic people to have a life of giving up on education and employment at the age of 21 and spending the rest of their life playing video games. I could;t think that this was much of a life for people I wanted to help them achieve goals and fill their potential – whatever that might be. I addressed this concern by writing a book on employment for Autistic teens to introduce them to what employment is like and build their confidence to work. When I was writing the book, I was asked to audition for a TEDx talk – I gave the talk in September 2013 on the day of a federal election which ushered in anew Government for Australia and ushered in a new phase of life for me.
Before doing TEDx I often had the experience of calling or emailing Autism organisations and having to go through a long description of who I was, what I did and how I could assist their organisation. Almost invariably I heard nothing back. I can actually pinpoint the moment at which this changed and I have my good friends at the Autism Cooperative Research Centre to thank. A few weeks after my employment book was released in 2014 somebody told me about a new Autism research body that was looking at employment. I quickly Googled the organisation and emailed them, desperately hoping they would want to consult with me around employment but being fairly certain I would hear nothing back. Two hours later one of their Executive, and now a good friend, contacted me and said how excited they would be to have my involvement in their reference group. ‘Wow’ I thought. And in fact two years later and I am a great friend of the Autism CRC and have worked with them on many projects and events.
Since then my Autism world career got a little bit excited. Which leaves me to this week. I do love a good Autism conference and the event today and yesterday was so filled with interesting and educational encounters that I can’t list them all but here are a few highlights:
- I caught up with many, many Autistic and ally friends and colleagues. I have a number of friends now and when I was younger I didn’t really have that many. I used to think people were doing me a big favour by being my friend but now I have a better understanding that it is reciprocal and my friends and I benefit from our friendship. There is an ever-expanding group of us who see each other at these events and I always have a great time.
- I feel comfortable being myself at Autism events. People seem to like and value me too. I am always a bit quirky anyway but when I am in settings with a lot of non-autistic people I can feel self-conscious and try to squash my Autieness and quirks. But now when I am at Autism events I get to be myself and people don’t get upset – actually quite the opposite happens and I think my foibles even endear me to some people.
- Like it or not, I am now a well-respected person in the Autism community. This still surprises me and I wonder when everyone will work out that I’m just an egotistical idiot and tell me to go away but it hasn’t happened yet!
- I loved seeing some of my friends who are in a different place on their journey speak to an audience and add their important voice and experience to the discussion. In my mind the more advocates there are the better. I don’t ever want to be the ‘only Aspie in the village’ and will always try to support others to build their confidence to advocate in whatever capacity that may be. I always say that I am not speaking on behalf of anyone except myself but that if others find some value in what I say that’s great. So the more people sharing their unique voice can only make things better.
Thank you to everyone doing the valuable work of advocacy and support and empowerment. It certainly is a fine way to spend one’s time.
Me doing my thing today