It’s been a wee while since I had a good autism-related rant on here, but my usual trip to the annual conference of the International Society for Autism Research (INSAR – formerly this meeting was called IMFAR) provides an opportunity.
Don’t get me wrong, there was lots to love at this year’s INSAR. Work which directly responds to the priorities of the community was much in evidence. As one commentator pointed out, at IMFAR 2014 there was a single poster reporting on suicidality in autism – this year there was a panel session, special interest group and multiple posters. While much remains to be done, there were also signs that the conference is waking up to the need to accommodate autistic people – including autistic academics of course – for example by introducing the deaf clap (or “flapplause”) in place of the sensory assault of a traditional round of applause.
But this wouldn’t be a ‘rant’ if there wasn’t something to complain about, and a bit of anger always produces the best one liners…
This year, my frustration was directed towards the sense of operating in a conference of two distinct halves. I could go to sessions that focused on topics prioritised by the autism community, that acknowledged neurodiversity and often had adopted an element of participatory methodology. Or I could attend talks pioneering excellence in scientific methodology, collecting data at a scale and level of sophistication^ that has a chance to drive major changes in policy and practice.
There were exceptions to this rule of course – I’m writing about a general impression more than a hard-and-fast categorical distinction. Moreover, I don’t mean to suggest that the participatory work being presented was not excellent and pioneering in its methodological field. But I’m a scientist interested in cognitive and neuro-biological phenotyping, rigorous evaluation of supports, and technical innovation. I don’t want to have to make a choice between seeing talks on the type of science that excites me, and talks espousing the attitudes that inspire me.
So lets consider some reasons why this situation might occur. I certainly don’t think it’s because people doing community-engaged work lack the chops to deliver excellent science – far from it. But it’s certainly true that participatory methods are not tending to attract the big bucks – partly because the larger funders tend not to be autism-specific. They want to see work that tells us something bigger about the nature of neurodevelopment or neurodegeneration, that pushes scientific innovation forward by keeping cells alive in dishes for longer than ever before, that might have applications to dementia, psychosis or artificial intelligence. It’s hard to prioritise community participation while maintaining translational and transdiagnostic impact.
The main factor though could be to do with the infrastructure of research and the rate of adoption of new concepts in the academy. The scientists who lead the sort of massive studies I’m talking about – large longitudinal cohorts; complex phenotyping across multiple levels of explanation (biology, cognition, behaviour, environment) – are likely to have formed their understanding of autism in the 80s and 90s when autism was bounded by fundamentally different diagnostic criteria. The definition of autism was far narrower and clinicians were only just starting to recognise the existence of clever, articular autistic people with very different kinds of support needs. At that time, using person-first language was a marker of an enlightened attitude, you might have published in the International Journal of Mental Retardation, and parents were crying out for “cures” for their struggling children.
One solution is to wait for a new generation of scientists to come of age – ready to win massive grants, to co-ordinate big international research teams and facilitate community involvement. But if we don’t want to sit around waiting for that change, we need to bring established leaders in the field up to speed with a progressive agenda and associated methodology – much easier said than done. First, they may not feel much motivation to change. As we saw in the keynote by Geraldine Dawson that opened the INSAR meeting this year, it’s possible for an established scientist to look back over her career and present an entirely coherent narrative in which all findings align with a straightforward theoretical account. If this is how a scientist perceives the field – and especially if they can convincingly present that account to funders – they may find it relatively easy to secure further funding for projects which fit that narrative. What motivation would they have to change up at this stage, inviting autistic people and their allies to mess with their neat account of what autism is and what society might want to do about it?
However even when you find a senior scientist who is keen to develop their participatory practice, or to turn their attention to new questions raised by autistic people, this may be hard to achieve. Participatory research, like any methodological framework, is difficult. And it is no trivial thing to learn new research skills at a career stage when your working week is jam packed with administrative responsibilities and strategic initiatives on top of the usual business of research, student supervision and teaching. Even disentangling the associated jargon – knowledge exchange, public engagement, citizen science – is tricky. As a result, many people simply equate “participatory research” (i.e. research that involves the active and meaningful participation of members of a stakeholder community) with “qualitative methods”. The two often overlap, but they are not the same thing.
This leads to another possible reason for the disconnect between excellence in scientific methodology and participatory research – the fact that many people believe they are fundamentally incompatible. Objectivity and the elimination of bias are fundamental pillars of the experimental methods used to probe cognitive profiles, diagnostic features and developmental changes in autism. Many scientists, I suspect, consider that working alongside members of the community will “pollute” their science with subjective perspectives, introducing bias and “woolly thinking”. What such an opinion fails to recognise is that while we might try to design objective methods which reduce bias, scientists themselves are far from objective. We are invested in specific theories of autism and focused on topics that interest us, in exactly the same way as autistic people themselves. Ask any scientist for their opinion of the field and they will tell you about their perceptions and feelings, their subjective interpretations – we are not walking meta-analyses (that’s why we need to do meta-analysis!). Working with the community is utterly compatible with robust science – as in the case of my neurodiverse intelligence project with Catherine Crompton. This study was inspired by a theory and research observations published by autistic academics. The grant was written with input from my autistic mentor and the novel experimental methods have been co-designed with two, paid autistic consultants as well as academic experts in related techniques. The work is currently pre-registered on the Open Science Framework (a great way to reduce risk of bias) and recruitment is underway.
Likewise I am now involved in a new multi-site trial of the MRB parent-group support.* This approach was co-developed with parents of children with autism, there are two parents on the trial steering committee, one of whom is also autistic herself, and the control condition intervention is being delivered by community groups. In a separate initiative at the Patrick Wild Centre we worked with a family to review the measures commonly used in clinical trials – the exercise gave us a much better understanding of how these measures make participants and their parents feel, and what we can do to make clinical trial participation a bit more positive. Now, none of these examples represents the highest level of participation to which I aspire in my work – and you could also make a critique of the scientific methods in each case. But I think they do show that good rigorous science – even very traditional methods like a randomised controlled trial – can be merged with participatory work.
What other options do we have for bringing cutting edge neuro-psychological science in alignment with community engagement? One is to use post-hoc consultation to help us interpret and disseminate results from existing studies. We took a step in this direction (though it was not really participatory research) when we surveyed autistic people and the wider community on their attitudes to early autism research. The survey was designed following focus groups to generate topics, and it showed us – among other things – that we should be thinking about moving away from the term “at-risk” to describe infants who are likely to get an autism diagnosis. In other cases, a ground-swell of opinion has had the capacity to shift the focus of major research initiatives. I’ve heard on the grapevine, for example, that the EU-AIMS consortium is re-focusing on treatments for conditions that co-occur with autism (e.g. epilepsy, learning disability) rather than on medications that moderate ‘core symptoms’.
There are many other examples which merge participation with high-level science, like a project at Newcastle addressing physical health in autistic adults, or Noah Sasson’s clever development of psychological methods to test predictions of the double empathy model. Here’s hoping that at INSAR 2019 and beyond we might hear from a few more scientists whose methods inspire the community as much as they dazzle their fellow scientists.
^ let’s be clear here – a big sample doesn’t mean a better project. We mustn’t allow ourselves to succumb to the tyranny of sample size, and the value of a project does not rest on it’s p-value. I’m a huge fan of small studies – qualitative and quantitative – to test new ideas, collect “deep dive” rich data, and systematically capture lived experiences of process rather than outcome. But there are some important questions that can only be resolved by big samples and comprehensive methods spanning biological, neurological, cognitive and behavioural data.
* MRB is Managing Repetitive Behaviours. I don’t want you to think that this is a variant of “quiet hands” however. The approach uses group sessions to help parents understand and interpret those restricted and repetitive behaviours that both cause family difficulties and are often an outward sign of inner distress. An example might be getting up every night to rip open packets of food in the kitchen and scatter food across the floor. End results of the experience might include removing environmental triggers that lead to anxiety and consequent repetitive behaviour; providing support and reassurance to enable autistic people to become less restricted in their choices; and simply learning to accept and embrace the repetitive actions of the child. I’ll be writing a page about this soon so you can learn more about MRB.
