Righti-oh, here we go with Part Two of my blog responding to some of the themes from the 2019 meeting of the International Society for Autism Research. Part One was all about Inclusion at the conference – specifically about the inclusion of autistic people – and this one is going to be about Interdisciplinarity. In fact, both blogs are kind of about the same thing, because what I’m talking about in each case is bringing people together, who have different kinds of expertise, and different perspectives on the application of that expertise, to help define and achieve a shared vision – more on that later.
But first, let’s start with my question to the INSAR Board at their 2019 Business Meeting.
This meeting takes place at the conference every year and I’ll be honest that I’ve never attended before, basically because despite my occasional snarky comments from the sidelines, I’ve mostly been OK with what the Board have been doing. At the meeting, the different board members present information about the INSAR finances, membership, the society’s journal, Autism Research, the society’s cultural diversity efforts and so on. All very jolly this year – healthy financial position, strong membership numbers, good journal stats, plenty of effective diversity initiatives, and so on.
However, one item troubled me and that was an opening statement from the INSAR President (Simon Baron-Cohen – hereafter SBC) that they had “restored the balance” of the conference this year, to include more biological sciences. This wasn’t only stated at the business meeting – SBC made the same point in his opening address right before the first day’s keynote. It was also obvious from the programme which included three heavily biomedical keynotes (against one at the more clinical / practical end of the research spectrum) and a plethora of panels and oral sessions on biomarkers, genetics, and neuroimaging.
This brings me to my question – which I was so nervous about asking I wrote it down on my phone, meaning I can replicate it fairly precisely here:
Has there ever been a time previously when the board felt it necessary to actively “restore balance”, and can we hear about what precisely motivated that decision in this case – was it based on any data or particular evidence? Also how was the decision delivered, for example at the level of abstract review and panel selections?
At the end I ad-libbed something about how I felt the integrity of INSAR was under threat because of the lack of transparency around these decisions.
What was the answer?
I want to be really clear here that I did not take notes on the answer, so please don’t treat what I’m about to write as accurate quotes, or a statement of fact. But I will share a few details from the response, which was provided by SBC.
In answer to the first part of my question, SBC noted that in the early years of the Society active efforts were made by the board to shape the content of the conference programme, intially working to include more cognitive and implementation sciences.
In answer to the second part, the decision was motivated by comments from lots of people.
And in answer to the third part, the decision was delivered in part by the appointment of Joseph Buxbaum, a geneticist, as chair of the programme committee.
So, what do we think of those replies?
Honestly, I’m not super-impressed nor reassured by the answers. Yes it might have been necessary to “shape” the conference programme in the early days of the Society, but in my opinion that’s quite different to intervening at this stage, when the annual INSAR conference is well established.
Importantly, SBC wasn’t able to invoke anything concrete as a foundation for the decision – it seems like a policy change has been made based on anecdotal evidence. The INSAR Board should know better. Also importantly, the delivery method was not well explained. How did appointing a programme chair who is a geneticist shape the content of the conference programme? Are we meant to construe from this that whoever is in that role gets to pick and choose which panels and oral presentations* are selected? If so, that seems quite a profound violation of the principles of peer review.
The process by which the “balance was restored” gets even more unclear when we notice that the number of people involved in the final programme selection process has been massively reduced for 2019 compared with 2018. The screenshots on the right show the relevant page from the 2018 programme (above) and the 2019 programme (below). In 2018 the meeting committee had 8 members and the scientific programme committee & topic co-chairs combined included 44 people. In 2019 this was refined to a 3 person meeting committee and just 19 people on the scientific programme committee. (And for the record, I admit I noticed this because I was dropped as a topic co-chair, but I’m not making a fuss for that reason!).
Why does it matter?
My concern over this unexpected twist in the INSAR story isn’t really about how much biomedical research gets featured at the conference – more on that below.
Instead it’s about the fact that an influential organisation that plays a significant role in shaping autism research around the globe seems to be making important policy decisions that are not evidence-based, nor transparently delivered. INSAR may not hand out research funding, but attending and presenting at the meeting is an important marker of status in the autism research community, that will contribute to professional success including winning grants. And moreover, INSAR’s global leadership and influence depends on its ethics and integrity, both now under threat. It’s a non-trivial matter.
So what next?
I’ve got a few reocmmendations on where we go from here. First, if you attended INSAR 2019 please complete the post-conference survey when it is circulated – as it will be within the next few weeks. Second, join me in asking the INSAR board to published the aggregate survey data so we can see for ourselves what the membership want from the meeting.
Third – and this is the hard one – we need collectively to work towards a scenario where autism researchers from all disciplines want to attend the INSAR annual meeting because they care about autism more than they care about science. I firmly believe that all disciplines are welcome to the autism research table – each has some unique tool to bring, helping to build knowledge that can support autistic people and their alllies, now and in the future. I understand the passion that drives scientists to develop new techniques and measures, and I love going to academic meetings where I can hear about the latest cognitive assessment techniques or community trial methologies. I also think it is marvellous if some of the autism-focused research our community does fans out and shapes the way other human experiences are explored and understood. For example, I’ve been involved in building a longitudinal cohort study of infants born preterm that was heavily influenced by the autism-sibling literature. In another case, I’ve started applying participatory research expertise, developed by working with autistic people, to a project focused on data science and mental health. This kind of thing places autism at the centre of funder and researcher priorities. Our status as a pioneering community of interdisciplinary and participatory research draws in the brightest and best, and helps to disseminate the insights we create together.
BUT none of these things – passion for science, excitement in discovery, the chance to break new ground – is more important than the bottom line which is, how does this help autistic people now, or in the future? If we all keep our eyes on that prize, we should be excited to attend a conference about autism research (especially one that is also inclusive of autistic people, natch!) regardless of the disciplinary “balance”.
If our shared values outweigh our disciplinary differences, that’s what makes for a brilliant conference.
* a quick note here. When researchers submit their work to INSAR they normally do in one of two different ways. One, a network of researchers can get together and submit a panel – this is a group of project abstracts that they want to present in a session all together, as a series of talks. Either the panel gets accepted as a whole, or it might be that individual abstracts from the group get accepted – either as oral presentations (talks) or poster presentations. Two, an individual researcher / team can submit a single abstract. That will either get picked as a talk, or as a poster, or rejected from the conference. Basically, having the chance to present orally – in a panel or as an individual talk – is considered more prestigious.