Dr. Harriet Cameron (University of ºù«Ӱҵ) and Dr. Luke Beardon (ºù«Ӱҵ Hallam University) have been awarded a small British Academy grant to work on a project with autistic co-researchers exploring meanings and experiences around autism.
This collaborative project centres the autistic co-researchers’ stories in connection to autism, to explore and name some of the shared experiences as well as to recognise individual journeys, joys and challenges. One of the aims of the work is to create a space where autistic adults work with Luke and Harriet to make sense of the themes across experiences shared in discussion. The thirteen autistic co-researchers bring their expertise, experience and subject knowledge; Luke and Harriet bring methodological tools, theoretical approaches and long experience working with autistic adults, and so far we have had a bunch of exciting, funny, insightful, sometimes sad, often joyful group and individual discussions centred around the question – what does it mean, from your perspective, to be autistic?
The next stage involves the co-researchers sitting down with transcripts and audios and making sense of the conversations, and for this we are using inspiration from Interpretative Phenomenological Analysis (IPA) which leads us each to ask questions like – what does this feel like? How are the speakers in the discussion making sense of this experience and these feelings? We are also taking a look at the language we use in our conversations – ‘how do we talk about autism and human experience around autism?’ and ‘what does this talk do?’
Working via zoom, via email, and google, we will be pulling together our collective analyses to co-produce a digital resource which will be specifically aimed at helping other autistic adults to reflect upon their own journey and experiences. In particular, we would like the resource to help adults think through the value of a formal autism assessment, to ponder self-identification outside formal assessment, and to think about how language can be used both to support and (by others) often to exclude or marginalise.
We don’t yet know what this resource will be! And this is exciting. The enthusiasm and expertise in the researcher group has already generated plenty of ideas – and we will be spending the next year or so honing these, and making collective decisions about how themes from our conversations can be communicated accessibly to others in the autistic community with depth, honesty and kindness.
We expect to be offering an update towards the end of 2021, and shortly after that to be sharing our final resource with everyone!
A few words from Luke:
The last year has been pretty tumultuous, I’d suggest. Not particularly insightful, I know! Plenty of lows for plenty of people I am sure. However, one of the highlights for me was the opportunity I was gifted to being a part of a research project that sang to me from the very first time I was involved. And what a highlight it turned out to be!
So much so-called ‘autism research’ doesn’t appear to me to have much relevance to autistic people. Why this is the case is beyond me, but the fact remains that there is still a dearth of autistic-involved co-researched projects that explore the lived autistic experience. When I got the chance to be a part of pretty much exactly that, suffice to say I was all aquiver – and still am!
Ever since I first engaged with autobiographical accounts of autistic adults around thirty years ago I have been hooked on reading and exploring those accounts; and when I get the opportunity to chat to autistic individuals themselves, it is such an honour. Learning from and alongside autistic individuals who are willing to share is such a privilege and one which I do not take lightly for one moment.
Dr Harriet Cameron from ºù«Ӱҵ University did all the hard work and secured a grant, while typically enough I sat back and waited for the fun stuff. The fun stuff in this case took the form of essentially having incredible conversations (remotely, for obvious reasons) both on a one-on-one basis and also as part of a group around being autistic. I got to ask questions ranging from ‘what does it mean to you to be autistic?’ - which is a question that is not asked anywhere nearly enough in autism research so far as I can tell (which tells its own story, perhaps?) through to ‘what research do you think should be being researched in the autism field?’. I mean, how utterly lucky am I? The conversations ranged from an hour to over two hours, and each and every co-researcher was as absorbing as expected. Some of the best moments of 2020 for me, that’s for sure.
What happens next, I hear you ask? Well, Harriet and I will now revisit those narratives and attempt to understand their meaning via a detailed process of analysis. We will then go back to our co-researchers, basically to ask them if we have got it anywhere near right. Our aim is to ensure that we have captured autistic authenticity from the start of the project to the end. We will take our time – those precious words deserve it.
This is a small scale project – nonetheless it is as important a project as any other I have been lucky enough to be involved in, and our hope is that it will lead to more of the same, but on a wider scale. The more autistic voices that are heard within the academic world of autism and beyond, the better.
