I just got back form Melbourne where I attended a research academy organised by the Autism Cooperative Research Centre (‘CRC’). I am on a reference group with the CRC and spoke at their participant day in 2014. They have always struck me as an inclusive and respectful organisation which takes cooperation very seriously. Their work involves funding research projects on autism and they also co-produce research with autistic and non-autistic peer researchers.
A couple of weeks before the event I started getting anxious. No matter how much I try to deny it or ignore it, I have a significant profile in the Autism community in Australia. What if I started name-dropping or butting in with pointless stories about giving a talk for TEDx or writing books or some other braggy thing? Would I need to somehow prove myself with a room full of Autistic people? What were others’ expectations of the event? Was there any point me doing the academy when I already work the equivalent of two full-time jobs? Was I taking a place someone else should have had?
In fact I didn’t need to worry. When I arrived I was met at the airport by two of the CRC staff and two academy participants who had just flown in too. We talked and got a taxi and my anxiety lessened as I realised it was OK to just be myself.
The interesting thing about this event was that it was Autistic space – meaning that most people were Autistic and that the ‘norms’ were set by us. I have only been in Autistic space like this at three events, including this one, and it has always been sort of hard to describe. The best I can do is to ask you to imagine you are an expatriate living in a country where you had to learn the language and you aren’t very good at languages. The country you live in also has customs which seem odd and even offensive to you but if you question them you are shouted down and judged. Then one day you find a club for expatriates like you. When you go in you feel immediately more relaxed and comfortable. You can speak your first language and practise your customs with no fear of blame. Of course the difficult thing in that analogy – and the real situation of Autistic space – is that you still live in the other country so once you leave the expatriate club you are an uncomfortable minority once more. Autistic space is where nobody judges and in all three experiences of it I have had, has been almost entirely kind and supportive and not interested in hierarchies or status. It is basically pretty amazing and makes me feel as if I have come home after a long and difficult journey.
I had a couple of helpful epiphanies at the event. One was around the medical model of disability. If you don’t know about his already, there is a medical model of disability and a social model of disability. The medical model is based on diagnosis and deficits and basically ‘fixing’ people. The social model is more based in the concept that what disables people a lot of the time is from a social basis and disability is beyond just medicalisation. Autistic people are often faced with the very deficits-based notion that we are broken and need a fix or cure. I always knew this in terms of external parties reinforcing that thinking and that in turn impacting on autistic people’s self-worth and identity but I never understood that some Autistic people actually internalised that about themselves. Even when I rejected my diagnosis it was because I thought it validated bullying and prejudice. I have never seen myself as broken on in need of fixing. This understanding helped me to not only understand my own advocacy and how I am happy to talk about my Autism to anyone willing to listen, but also the difficulty those who have internalised that medical model must go through.
In the workshops and sessions at the academy, I felt an overwhelming sense of respect for our opinions from the non-autistic members of the project team (which was 50/50 Autistic / non-autistic). It was not tokenistic but based in the view that our Autistic perspectives were essential to the work of research on topics related to Autism. At one point we formed groups with researchers and looked at a research question and unpacked it, sharing our perspectives in a very helpful dialogue. I think everyone involved made connections which will continue beyond the event. On Sunday we had dinner with CRC Board members and then had a wonderfully enjoyable trivia night with everyone – including the Board.
I made new friends and consolidated existing friendships. The event was so valuable for that reason alone, but there was also some more professional networking done – which I find often overlaps with friendship in my life.
I will recount an anecdote which I think quite neatly sums up how I experienced the event and Autistic space. For the dinner with the Board members I decided to dress up. I don’t do cosplay in the usual sense – inventing a character or avatar and putting together a costume to express that. Instead I sort of cosplay myself. On Sunday I was happy and wanted to make an impression….I wore an orange patterned caftan with different coloured rhinestones on the front, my gold sequin Converse sneakers, lots of shiny jewellery and my orange ringlet wig (think Little Orphan Annie meets Janet Frame in Jane Campion’s ‘An Angel at my Table’). I walked to the dining hall – we were staying on campus at a university. I walked past a couple of students. I’m not good on facial expressions but I could tell the two young women thought I was a little strange. I didn’t care at all what they thought and embraced my difference. I walked into the dining hall and the CEO from a major organisation greeted me warmly and remarked that I was wearing a new wig which he hadn’t seen before. We discussed a talk I am doing for his organisation and had a good laugh together. I had dinner at a communal table with academy participants, program staff, researchers and a couple of Board members – including an Autistic friend I don’t see often but love catching up with. I sat there among my peers, colleagues and friends and knew that I am one among many. We have a strong community and incredible potential. I never do ‘us and them’ – instead I try to do ‘bringing along with’. This event was very much in the camp of working together and bringing along with. And while it is probably unlikely that I shall ever spend my whole life in Autistic space, the research academy showed me that we don’t have to always speak the non-autistic language. We can also teach non-autistic people to speak our language, with all the depth and wisdom which comes with it.