I was lucky enough to spend two days last week helping with the Inside Out Autism conference at the University of Kent. This was a new university for me, on a verdant campus with trees and rabbits on a hillside overlooking Canterbury. The weather was beautiful, not that I saw much of it, as the main conference venues were two theatre spaces with no windows. No air-conditioning, either, so the conference was hot stuff in more ways than one.
The first day of the conference focused on autism and participatory research, the second on autism and gender. Around 50 people attended each day; some came for one day or the other, many for both. Most of those present were autistic, and the conference was wonderfully inclusive. Conference bags held fidget spinners, ear plugs, and stickers in green and red to indicate ‘I’m happy to chat but I might struggle to initiate conversation’ or ‘I probably don’t want to talk to anyone right now’, as well as more usual items such as notebooks, pens, Post-Its and copies of the conference programme. There were two seminar rooms upstairs for people who wanted time out, one designated as a quiet space and the other as a chat room. Hand dryers were turned off in the toilets and paper towels provided. People could, and did, dip in and out of sessions as they wished or needed to. There was a single stream of activity throughout, rather than multiple parallel strands, and most presentations were recorded which meant people could catch up later with anything they’d missed.
The quality of the presentations was excellent. None was longer than half an hour, and many were ten-minute ‘thunder and lightning’ sessions – either a thunderous provocation or a lightning report of relevant research. Presenters came from all levels of academia and beyond, including independent researchers and colleagues. I won’t give a blow-by-blow account of each presentation, because that would be boring, and anyway you can read the Wakelet – several of us were tweeting – and check out the presentations for yourself online. But, truly, all of them were interesting and engaging, and I find that is rare at academic conferences.
One session I enjoyed, that wasn’t recorded, was in fact one I facilitated. There was an exhibition of around a dozen thought-provoking posters and time dedicated for everyone to look at them. After that I asked people to write down any themes they perceived, or other responses they might have, from the exhibition as a whole on Post-It notes and stick them on a wall. Then at lunchtime I took all the Post-It notes and grouped them into categories on five pieces of flip chart paper. From memory, I think the categories were:
- autistic identity and experience
- difficulties and challenges
- questions remaining
- autistic community, and
- positive aspects of autism.
Each piece of flip chart paper was placed across a couple of chairs with a marker pen, and there was plenty of space between them to move around for an open space session of go-as-you-please discussion. There was a helper at each place to encourage people to write down their key thoughts. People were tentative at first, clustering in the doorway or sitting on one of the few seats around the edge. Someone said, ‘We’re not going to do some kind of group thing, are we?’ I reminded them that they could dip in and dip out, and slowly people began to engage with the flip charts, each other, and the whole experience. There were some really rich discussions and the helpers did a great job of encouraging people to record the important points made. At the end we had a feedback session which stimulated some more very useful discussion – and lo and behold, those of us who had chosen to be part of that stage of the process were indeed doing a group thing! I would estimate around 25 people stayed and made themselves comfortable in the space in a variety of ways: sitting or lying on the floor, sitting on chairs or standing or leaning on furniture, facing towards the centre or away.
These discussions, and indeed discussions throughout the conference, held a great deal of nuance. People who used categories such as ‘autistic’ and ‘neurotypical’ took care to acknowledge that this did not imply homogeneity within those categories. In the day on gender, while there was rather more ‘male and female’ type language than I would have ideally liked, there were also several mentions of trans and non-binary people. People talked about class, and race, and intersectionality, as well as autism and gender.
The conference wasn’t perfect. One session should have had a trigger warning, and didn’t; several people pointed this out to the lead organiser who made a thorough apology at the start of the next session. One speaker had a slide which upset some audience members, who raised their concerns in a question. The speaker gave their reasons, apologised for the upset, and asked what they should do differently another time; another audience member made a suggestion, which was accepted. And here’s one of the things I love about autistic people: they move on. They don’t seem to mess about with egos and judgement like some other kinds of people. I find it relaxing to hang out with autistic people because I know that if they have a problem with me, they’re likely to tell me, and help me figure out a solution if I can’t come up with one by myself. And then we all move on.
There was also an unexpected personal outcome. When I first introduced myself at the conference, I said “I think I’m neurotypical, although one of my autistic friends tells me that I’m neither neurotypical nor autistic, so probably I’m in a category that doesn’t yet have a label.” By the end of the first day some of my new autistic friends were questioning this assessment. One person, who I will call Chris, told me that someone else at the conference, who I will call Hardeep, has a form of synaesthesia that enables them to distinguish between neurotypical and autistic people. Apparently, for Hardeep, neurotypical people have a kind of spiky outline, perhaps with diffuse colours, whereas autistic people have definite shapes and colours. I was interested to find out how Hardeep would perceive me, so the next day Chris introduced me to them to find out. “You’re a lime green pencil,” Hardeep said, with no hesitation or uncertainty. “Yep, you’re definitely autistic.” Chris told me there was no doubt in either of their minds.
That was a bit of a shock and it took me a while to process. I’ve been content for a while now to think of myself as neurodiverse, and I wouldn’t have a problem with being autistic. But it seems that to be autistic you need a thing called a ‘diagnosis’. Right now I can’t see what purpose one of those would serve in my life. Also, given that I’ve just spent a lot of time hearing about how difficult it is for women and girls to get such a diagnosis, it doesn’t seem worth the bother to try to obtain one for myself. (Though if I find my disinclination is contributing to the misdiagnosis of other women and girls, that could change my mind.)
One of the presenters said they preferred the term ‘discovery’ to ‘diagnosis’, a viewpoint which seemed to resonate with many people present. So I’ll go with that for now. I’ve discovered I’m a lime green pencil, which makes as much sense to me as any other label I’ve ever been given. More importantly, I’ve discovered that I am welcome in a community of people I respect, and that is worth more to me than any diagnosis.
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I am 95% sure that I have what used to be called Aspergers. But like you, I haven’t decided whether I want to be diagnosed. When it comes to psychological diagnoses I’m often afraid that I won’t convince the psychologist that I have something worth looking at. Nevertheless, knowing that I am most likely on the spectrum has helped me accept my quirks and struggles. I am able to find resources online from people who research Autism and who are on the spectrum. In other words, the lack of an official diagnosis has not prevented me from learning about myself and working to address my challenges.
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Fariba, thank you so much for your supportive comment. Actually since I wrote the post I have decided to go for a diagnosis, paradoxically because I know it’s difficult for adult women to get diagnosed so I kinda feel like it’s an important thing to do for wider reasons than my own personal concerns. However, I too am a bit worried that the professionals may not be convinced… we’ll see. Either way, I too am finding that exploring this whole thing is helping me to learn about myself and work to address my challenges. Lovely to hear from someone in a similar situation, and I wish you luck on the road you’re taking.
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