IAR Festival 2021 (Interdisciplinary Autism Research Festival)
Our idea was to put together an event that would foreground what autistic people know about autism and which would provide tools and resources to researchers and the community to ‘make sense’ of new understandings of the condition that could support mental health and flourishing for autistic people and their families. This is designed as a direct intervention in ‘deficits’ -based models that focus exclusively on autism as a problem to be solved rather than as embodied difference and the source of new understandings of what it means to be human.
After much deliberation in 2020, we decided to hold the event online in May this year, rather than in person as it had originally been proposed or to wait until the lockdown situation had passed. We had more than 600 people attending over three days (19-21 May), and they were able to freely access 12 panels, four workshops, and two film screenings and take part in 12 Q&A sessions. We were lucky enough to have more than 30 speakers, many of whom identify as autistic or otherwise neurodivergent/disabled. Our organising and support teams were predominantly autistic. My research was funded by the Wellcome Trust. It would not have been possible to host this event without the support of Georgia Pavlopoulou and Damian Milton, who gave me access to their contacts and understanding of how to support people. While I identify as autistic, since I work in a humanities field, I have not had any previous experience of organising events of this kind or supporting autistic community members.
The events were designed to be accessible to autistic and multiply disabled audience members, and we had BSL and closed-captions throughout. We had 15,000 people interacting on social media for 3 days during the festival period in posts to @Iarfestival.
Funding for the BSL and technical support was also kindly provided by The John and Lorna Wing Foundation, via the Flow Unlocked project (with is run by Georgia Pavlopoulou). One of our BSL interpreters and our Zoom support adviser was also autistic. Many autistic people who took part said they felt that for the first time they felt that being autistic was actually an advantage. I include some of the other most noteworthy feedback we have received so far. For me personally, the event showed the potential for online events to create new communities; it demonstrated the creativity and knowledge of autistic people and it demonstrated the need for broader change away from a deficit-based model, away from the idea that autism is a tragedy or a life wasted.
Professor Sue Fletcher-Watson from the University of Edinburgh said it set a new standard that future autism research events should follow.
A small sample of feedback from the audience:
J (autistic educational psychologist)
What a fantastic day!! So much of what was said resonated with me personally and professionally. Especially Amy, I think I had a similar journey to her but in practice not research, but it was getting sucked into the deficit narrative early on, not being comfortable with it, and seeing the light with the ND model.
Usually, at these conferences, I sit there thinking "ouch, that hurt!" all the way through as I'm sure you do too. Thinking about Cos' workshop on ableist language, there are some days when I went home from work feeling like I'd been a punchbag all day, not just the comments but as Cos said, there's no understanding that it's offensive and upsetting. Today it was all inspiring and it felt so positive.
E (parent of autistic daughter)
I had to sort out some animal-related thing yesterday and I went leaving my laptop open and conference on. It was the talk with the guy who did the animation. When I came back [daughter] was crying - not in a bad way but in a ‘being seen’ way, I think. She couldn’t explain but I asked her if she was crying because she knew what the film was trying to say and what it felt like to not have speech sometimes. And she said yes.
I also told her that there were so many people like her who had experiences like her and that they will always try to help and that she could meet them. And she said she wasn’t ready yet, but I could see her figuring out that it was an option. So that’s a very pleasant but unexpected consequence of having it on all day in the background.
Dr Anna Stenning – University of Leeds, 25 May 2021
See here for an illustrated guide to the festival.
You can access IAR Festival talks here.