This post was originally posted on the Centre for Health, Technologies and Social Practice blog and can be read here: https://thesp.leeds.ac.uk/new-article-on-public-engagement-with-autism-science/
In October, Warren Pearce (of The University of Sheffield) and I published an article snappily titled Autism scientists’ reflections on the opportunities and challenges of public engagement: A qualitative analysis in the Journal of Autism and Developmental Disorders. As you might gather from the title, the article is concerned with the ways in which scientists (experimental psychologists and neuroscientists, in particular) understand their interactions with autistic individuals.
The article is available open access so you can click on the above link and have a read. If you don’t have time, though:
Our core finding is that researchers describe engagement activities as particularly difficult due to an interaction between substantive political differences within the autistic community and impairments specific to autism. While existing research has noted conflict and political difference within the autism community…, that impairments—most notably socio-communicative impairments—are perceived by some of our interviewees to significantly affect engagement is an important and novel finding which has consequences for determining the nature of future engagement activities. (Hollin & Pearce, online first, p.2)
As is hinted at in this quote, our hope is that this paper will encourage scientists to, first, dwell upon how they go about conducting public engagement activities; second, devote time to developing mechanisms and venues for engagement which allow fruitful dialogue; and third, accept that dissensus is an inevitable part of the politics of autism, something to be embraced rather than feared.
Publishing something new is always a bit scary – you never know if it will be well received, roundly bashed, or simply ignored – but publishing social science in a scientific outlet comes with extra dose of trepidation. JADD is a high-profile journal – Google Scholar ranks it the number 1 journal for both ‘child and adolescent psychology’ and ‘developmental disabilities’ – and overwhelmingly publishes quantitative work. Pieces like ours stick out like a sore thumb in this context and can receive kick-back from scholarly communities who aren’t used to reading sociological analyses and may, in some instances, doubt the value of qualitative research or even the motives of the researchers. The last time Warren and myself published a qualitative piece together in a scientific context (in Nature Climate Change) the paper received a mixed response and, despite a significant amount of debate, I don’t feel that we ever got very close to a satisfying conclusion or rapprochement.
It is early days, but it seems like the response to this paper is more positive. The article has been downloaded over 3,000 times; has been blogged about and discussed on a podcast by the Autism Science Foundation; and has received generally positive feedback on social media. Jack Cusack, director of science at Austistica, the UK’s autism research charity, described an ‘Interesting and important article on the importance of embracing dissensus (as well consensus) and productive dialogue with respect to public engagement in autism research.’
Not every response has been positive, of course. One criticism is that we should have been harsher on scientists who could be read as blaming autistic people for any failings in public engagement activities. We understand this criticism, and it would be churlish to quell dissensus when the paper encourages us to embrace it! Because I only spoke to scientists (this paper emerges from my PhD, which was concerned with autism science more broadly) we’re simply unable to a) say what ‘really’ happens during engagement or b) present counter-positions from autistic self-advocates. We do try to push back where appropriate – stating, for example, that any ‘assertion that the autistic individual is the ‘problem’ in engagement, in particular, can and probably should be problematized’ (p.8) – but there is much work left to be done in the area and it will need to improve on our piece.
For Warren and myself, it’s been great to have a positive experience publishing in an outlet such as JADD, which is so different to the places I’ve published other work from this project. We’re both now working on our own projects which consider other arenas where there is a significant degree of dissensus: Warren’s Making Climate Social considers climate science debate on social media, whereas my own recently launched Hard Knock Life (website forthcoming!) looks at head injury in sport.We’re hope to build on this experience in order to continue a productive dialogue between scientists, stakeholders, and sociologists.