Updated: Mar 18, 2022
Every single year conference season is in roughly the same period – it tends to begin around about April, and usually runs until late August. Every year I submit various abstracts up to six months beforehand, and every year April sneaks up on me to my (completely predictable) surprise. This year, I decided that I would write about my experiences of conference season for many reasons – firstly, there has been a radical shift in how conferences are done, and as a disabled academic I think it’s important to discuss what this has meant for me, and secondly, I did tell my very gracious funder (the ESRC & SGSSS) that I would. But I am not only writing out of obligation.
Truth be told, I have a love-hate relationship with academic conferences – it represents an opportunity each year to talk enthusiastically about my research (which I am abundantly passionate about), and to hear about what everyone else is doing. I love the friendship, the catching-up with people, meeting superstars of autism research, and the connections I walk away with. On the other hand - stale sandwiches (that I can’t eat anyway because of gluten), terrible coffee (that I drink anyways because caffeine), fluorescent lighting (ugh!), and more often than not a lot of the research I encounter is pathologizing at best and dehumanizing at worst. To borrow (and butcher) a quote from Forrest Gump – conferences are “like a box of chocolates… You never know what you’re gonna get”. Conference season 2021 has been like eating from a box of chocolates in the dark because we have thrown COVID-19 into the mix, and all the technology that comes with it, to be able to have conferences which are usually in slightly bleak hotels, or lifeless campuses, online.
While I have done many conferences, talks, and posters this season (with some still to come), I will focus on the two biggest that I attended this year. The first is a staple in autism research having recently celebrated its 20th anniversary – INSAR annual general meeting. It is the largest autism research conference in the world hosted by the International Society for Autism Research – sponsored by Autism Speaks, and SFARI (Simons Foundation Autism Research Initiative amongst others. Although a staple, this year was the first time I attended – it is usually a very costly flight away (it should have been Boston this year), and as a PhD student I could never afford to attend. My current Fellowship would have allowed me to do so this year (thank you ESRC), had circumstances been very different (no thank you, COVID). The second is the new kid on the scene, bursting into the conference calendar with a resounding vibrancy – the first ever Interdisciplinary Autism Research Festival (IARF). The IARF was organised by Dr Georgia Pavlopoulou (IOE and UCL’s Flock Unlocked Collective), Dr Anna Stenning (University of Leeds), and Dr Damian Milton (University of Kent and Participatory Autism Research Collective) and was funded by the Wellcome Trust and the John and Lorna Wing Foundation.
The INSAR meeting ran from May 3rd – 7th, and Dr Eilidh Cage and I had applied to co-chair a panel on autism and stigma. I had no particular hopes that we would be scheduled into the conference, despite putting together a frankly killer panel with ourselves, Desi Jones, Dr So Yoon Kim, and our discussant Dr Jac Den Houting. My reservations came from everything I knew about INSAR, a conference with a penchant for deficit, pathology, and an array of rat model research. Our research panel – affirmative, based on social change, and from a multitude of perspectives – seemed to jar with the bread and butter of the conference. But we were invited to give our panel, and we did, to what I would consider great success.
Aside from this, INSAR was predominantly lonely. It was multiple days of deficit narratives, from overwhelmingly non-autistic people, all focussed on early identification, remediations, the causes of autism, genetics, and very little social research. To be fair, my hopes were limited from the moment we submitted our abstracts given that the conference had a category for post-mortem studies, but nothing for stigma, discrimination, quality-of-life, or any real “social” angle. There were 40 “topics” – all of which aimed to put autistic people under the microscope in every way possible, and none that focused on the social context of autistic lives, the way we are treated, nor the role the non-autistic people have in the perpetuation our poor outcomes. We shoe-horned our abstracts into a topic on social cognition.
I attended a multitude of talks, and very few it seemed, started with the premise that autistic people are humans, with agency, rights, or voices. A lot of the talks (though presenting what might be interesting science), objectified autistic people, as literal objects that all of these processes were happening to. The word density of the words “disorder”, “disease”, “dysfunction”, “suffering”, “unnatural”, and “problem-behaviour” per hour of my day experienced a very sudden, blood pressure inducing spike. Some keynote talks (which sparked fierce debates on academic Twitter) boasted about the glory of maintaining the status-quo, the unimportance of language preferred by autistic people, and a frankly odd ode to the puzzle piece. My only saving grace from INSAR was the kindness of my academic networks. On Twitter I had engaging conversations with academics who broke up the monotony of loneliness with jokes, the perfect amount of sarcasm, and much needed friendliness. Though I attended INSAR virtually, and it was lonely, I can safely say that I did not attend INSAR alone, and I cannot wait to one day attend in person to just say thank you to the people who made this less terrible. The only other upside of virtual INSAR was that I could drink my own coffee made at home. Good coffee is a godsend.
The IARF, taking place just two weeks later, from the 19th-21st of May, could not have been any more radically different. From the outset, the organisers aimed to make a conference by and for autistic people, one which put centre on stage, the agency, creativity, and humanness of autistic people. My talk for IARF was a critical reflection on my PhD, and how ideas of objectivity have fuelled the dehumanisation of autistic people in research, and further, how damaging it has been for me to engage with such dehumanising accounts of autism. I have never been more nervous than when recording my talk. I re-recorded it 4 or 5 times. I cried in between takes. Talking about this with my spouse, I reflected on how all my other conferences had been a masterclass in masking. Any creativity, autisticness, and sense of self had been left on the doorstep of normative conferences, with normative standards, and I really wanted to put all of myself into this talk. This conference was like coming home, and I wanted to come home as authentically myself as possible – but years of sanding down my autistic edges for such a normative world also meant that I had very little idea of what is actually me. I’d record my talk and delete it. Record my talk, again, and again, and the realised and no recording would really be enough. I submitted my talk eventually, with my voice hoarse from talking, because it would just have to do. As an autistic academic I feel like I have waited so long for the IARF, and not even half the time of the longer standing veterans of autism research.
The IARF did not disappoint. No, in fact, there is no praise high enough for me to give the IARF in the way it burst onto the scene with such vibrancy, power, and joy. The majority of presentations were made by, with, and for autistic people – it was a love letter to what it means to be autistic in a neuro-normative world and encapsulated not only the trauma of our existence in this world which marginalises us, but also our capacity for connection, joy, resistance, and a hope for the future which does not celebrate our potential absence but embraces our presence as a gift. Speakers at the IARF did not erase the idea of disability from autism – not even close. Instead, the idea of disability, difference, and divergence was centre stage in a way that did not value autistic people by normative ideas of what it means to function. Speakers started from the beginning position of autistic people being fundamentally human, and of value, and who would have thought that this idea was so radical. I happy-flapped and stimmed my way through thought-provoking, challenging, and joyful talks which stressed the agency of autistic people, through talks which celebrated the familial love which surrounds autistic children, and artistic, creative, and genuinely moving talks which bridged autism over into the arts, literature, and music. The IARF was more than a breath of fresh air, it was like coming up for air when underwater – I needed it more than I ever realised I would or could. Having spent years listening to sound of neurotypical researchers trying to fix me, and all autistic people, hearing a celebration of our complexity, our limitations, our strengths, and our value was a piece of astounding academic and personal history.
Institutions like INSAR persevere because of their enormity, but despite the IARF’s (I imagine) much smaller budget, its honesty, heart, and warmth will come to hopefully challenge the way that things are done because now we know what is actually possible. We know what it is like for autistic voices to be front and centre, for autistic people to be granted the most basic dignities of our preferred language, for talks to centre on our priorities, skills, and narratives. And importantly, no one rushed to the defence of a puzzle piece, which seems like a somewhat easy win. All in all, to me, it seemed like INSAR was the darkness of a tunnel, and the IARF the light at the end. I am filled with hope that each year, the darkness of a research agenda which dehumanises us will become like a shorter and shorter winter, and waiting for all of us will be the sunshine of an autistic-led, autistic embodied, and utterly autistic celebration of the complexity of our lives in the form of the IARF.