Here we are in early May and it’s time again for my annual blog responding to some of the themes I saw at the International Meeting for Autism Research, which this year took place in Montréal, Canada.
Shortly before the meeting, the autism-specific news outlet Spectrum (funded by the Simons Foundation Autism Research Initiative) published a couple of pieces highlighting debates within the broad autism community – a group that includes autistic people, their families, researchers and practitioners. One was focused on the impact of neurodiversity on autism research, and another was outlining debates about the content and delivery of the INSAR conference programme. The general response to these pieces among the folk I was talking to before this year’s meeting, was disappointment at the unnecessarily divisive tone and content.
As a result, I had planned to write something at the end of the conference that would be focused on working together and finding common ground… but I have to admit that my principal emotion during INSAR2019 was one of righteous anger. This was based around two issues and I find I have so much ranting built up that I am going to have to cover each one in a separate blog post! This first one addresses Inclusion and soon I’ll share another one talking about Interdisciplinarity – that second one will include some more information about the question I asked at the INSAR2019 Business Meeting.
But let me say here, before the rant really starts, how passionately I believe that delivering the evidence-based understanding and support that autistic people deserve means working together – across disciplinary boundaries, beyond ivory towers, throughout the whole constellation of autistic experiences. But for now, I hope you’ll forgive me if I spend a moment exploring what made me feel so angry….
(lack of) inclusion at INSAR 2019
INSAR2018 took place in Rotterdam and for the first time that I recall, a conference-wide inclusion measure was introduced in the form of “flapplause”. Inspired by deaf clapping, this initiative is designed to eliminate the overwhelming auditory experience of a round of applause, and the term “flapplause” gives it a uniquely-autistic label. I first came across the use of the deaf clap at autism events about five years ago, but reliable sources inform me it’s been used at autistic-led events for much longer. As far as I could tell, the innovation (in INSAR terms!) went well in 2018 and I had assumed it would become a stable part of the conference. In 2019 the INSAR board also initiated a reduced conference fee for autistic people attending the meeting, and so this sort of simple accessibiity feature seemed even more important. Yet despite this, the conference organisers for 2019 announced that flapplause would not be mandated at the conference and instead people could show their appreciation as they wished. In practice this meant that the vast majority of people clapped, not helped by the INSAR President Simon Baron-Cohen specifically asking for “a round of applause” a couple of times during his opening address. In one session I waved my hands from the back row as the rest of the room clapped, and was immediately targeted by the speaker: “Oh yes! a question already at the back there?”. Me: “No no. I was just flapping.”
So, why was flapplause not mandated at INSAR2019?
Two kinds of objections were raised. First, there were – remarkably – people who seemed to think that it is unneccessary for INSAR to prioritise the needs of autistic people at all, including one staggeringly narrow-minded and ignorant writer who stated that “our method for accommodation is inside out when we all flap so a very few don’t have to worry about clapping“. I can hardly bear to refute this point of view, it is so out of sync with everything I believe… but for anyone struggling to keep up. First, disabled people are in a minority and so yes, disability accommodations do benefit a minority of people. This is part of why such measures have to be government mandated a lot of the time, because otherwise the non-disabled majority wouldn’t bother. If inclusion measures were designed for the majority, they wouldn’t be inclusion measures, they’d just be what everyone did already. A world built around the majority (or around the powerful) isn’t a world we should want to live in. Inclusion matters. There should be no public space on earth that isn’t welcoming to autistic people, and a conference about autism should be especially welcoming.
Second, staggeringly, a couple of spurious objections were raised to the specific use of flapplause as an inclusion measure, and these are easily dismantled. One was that people were unable to judge the audience’s reaction without audible clapping. This is utter nonsense. I have literally never heard of an academic referencing the volume or quantity of applause as a marker of how their presentation was received. Applause at academic events tends to be utterly consistent – I regularly clap along while whispering to my neighbour that I have doubts about the chosen analysis, or whatever, and I’m certainly not alone in this. Plus, provided you are able to see ok, it is just as easy to guage reaction from deaf clapping as from audible clapping. In fact I really appreciate the fact that when presenting to autistic people, they will often give me a little flap part way through the talk if I say something they agree with. In this sense, flapplause presents a much better way than audible clapping to show appreciation for specific points being made without interrupting the flow of the talk.
A second objection was about people being distracted by the political point of view apparently embodied by flapping. I don’t think the person quoted actually agrees with this perspective, but the point of view represented is both ignorant and pathetic. First, although getting accessibility measures through often involves political agitation, it’s wrong to label flapplause as politics. This is about making a simple adjustment to the environment to allow everyone to participate. If autism researechers don’t understand the neccessity of doing so, I question what they are doing in this field. In fact, what I suspect underpins this kind of objection is the fact that there are large groups of autism researchers who do not want to be reminded that there are autistic people listening to what they say. Again, they should be asking themselves what they’re doing in this field if they’re not prepared to speak about autism, and about their research, to autistic people, in a way that is respectful and kind.
Overall however, I’m disappointed to even have to write about this. Any and all objections, spurious or not, utterly disintegrate in the face of the absolute necessity of MAKING A CONFERENCE ABOUT AUTISM ACCESSIBLE TO AUTISTIC PEOPLE.
But does flapplause really work for all autistic people?
This is a much more interesting and valuable question and I don’t have a simple answer. While deaf claps have been used at lots of autism events with success, there are autistic people who have said that they find the visual stimulus overwhelming. This is just one example of how complex inclusion is, especially for a population as diverse in sensory profiles (and other facets) as autistic people. Others (but not autistic people, as far as I’ve seen…) have raised the concern that a whole bunch of non-autistic people deaf clapping at an autism event might look mocking, because of the hand-flapping that is a distinctive part of many autistic people’s repertoire. However I do know two things for certain.
One, I am not the person to resolve this debate and nor are any other non-autistic researchers, well-meaning or otherwise. We need evidence-based resources (co-)developed by autistic people to dictate what effective access and inclusion looks like. Thankfully there are already many of these. For example, on the Shaping Autism Research website you can download a starter pack on participatory research which includes some basic inclusion tips. In addition, this sample programme from one of the events in the series includes details of various inclusion measures and a helpful “terms of reference” page to help level the playing field when it comes to making sure people from outside academia feel comfortable and welcome at an academic event. In the literature, my colleagues and I have published on methods of participatory working, which can be applied to co-leadership of a conference as much as to collaboration on a research project. Meanwhile another Fletcher-Watson (CoI: he’s my husband) has described and evaluated measures to make events – in this case an arts festival – more accessible. Finally, there is now a long and healthy tradition of autistic-led events such as Autscape that are at the cutting edge of accessible and inclusive autism practice. The INSAR leadership should be drawing on these resources when they design their meeting, and doing so with local autistic co-chairs as well.
The second thing I know for sure is that is shameful for the International Society for Autism Research to be trailing along in the wake of such developments, confusedly playing catch up and wondering aloud what good autism inclusion looks like. INSAR is I think the only autism organisation that transcends international boundaries, and that doesn’t have a specific remit based around a particular section of the autism community. The research generated by INSAR members and their affiliates aims to support autistic people of all kinds, it wants to be relevant to their families, friends, colleagues and employers. It drives national policies around the world. It is laying down fundamental insights on which future innovations can be built. And the members have privileged access to the latest knowledge and thinking about autism. Given this, INSAR should be right at the forefront of discussions about inclusion of autistic people, rather than scrabbling about in others’ wake.
So, what next?
There is some hope for the future. John Robison, autistic INSAR board member, and Sarah Jane Webb, meeting chair for INSAR2020, have invited people to submit suggestions to make the 2020 meeting more inclusive. I hope lots of people will send suggestions but, more than that, I hope that INSAR will recognise that there is already a growing evidence base for good inclusive practice in autism, as well as a much wider and deeper foundation in Disability Studies more generally. INSAR prides itself on being the home of the best autism research worldwide – let’s hope it quickly becomes the home of the best autism inclusion as well.