It’s here! A Starter Pack for Participatory Autism Research
Interested in making your research more meaningful to autistic people’s lives? Want to do research with autistic people, rather than on or about them? Intrigued but don’t know where to start?
Well, this Starter Pack is for you. In fact, it is for anyone involved in autism research - in any discipline, in any capacity and in any stage of their lives.
It describes how you can begin to genuinely involve autistic people in your research – in such a way that it promotes trusting relationships, is built on mutual respect, and involves listening to, and learning from, one another – that is, being empathetic researchers.
The Pack also provides some practical ideas about how autistic people and their allies can work together in research.
All of the content was inspired by discussions and debates held in Edinburgh, Newcastle, Cardiff and London as part of the ESRC-funded Shaping Autism Research seminar series. And it was made beautiful by the wonderful artists, Ben Connors and Jon Adams - Flow Observatorium, and amazing designer, Adele Jeffs.
“Advocacy may be given freely but there is always a hidden and forgotten cost”
Dr Larry Arnold reflects on the London ESRC seminar on participatory autism research and what people need in terms of support to be an effective researcher or participant.
I would like people to think about those things that make it personally difficult to be involved in academic processes, and research generally.
This is a call to both those who have support at home, and those who don’t as I really want to focus on those things apart from daily living, the extra on top that is required to be fully functional as a meaningful contributor to research.
To begin with a little anecdote from my supervisor about a well known and well publicised “ground breaking” piece of research and the participants, that there might be considerable problems with the validity of the findings when you consider some of the complaints from some of the individuals who took part at what discomforts they had to put up with in the hotel before.
I can personally echo some of that from my own experience of travel to take part in research and I can be fairly sure that we all have our stories, including about the recent seminar and how that might have increased our stress levels.
When we do all participate in these things, and people think they have been a success because we have managed to articulate things, I think of the analogy of the duck, who you might see gliding serenely across the pond unaware of how furiously it is paddling beneath the water.
Perhaps this could be more formalised in the form of a questionnaire but for now I am suggesting things to think about.
Begin:
Start with what you actually find difficult, don’t leave anything out, all the things that make the day more stressful, or require you to limit the number of times you are able to do this
Next.
What are the things in terms of personal assistance, technological assistance or otherwise that you think would make it easier, don’t worry about what it would cost in real life to provide it, all, we have to let them know.
FWIW these are the same things that were being discussed in the recent symposium on access for post graduate students and as that is a continuing process I am sure that there is likely to be a lot we can learn from that.
For example, some of us were able to gain support at our universities from DSA, for me that meant being able to have a “non medical helper” that is to say a personal assistant for internal events and courses, however the question was asked at the symposium if anyone had asked for that assistance to be made available at an external event, like the symposium we were attending. It seems that the universal answer was that no-one had ever been able to get that accepted.
If you cannot get that even within a support structure like DSA, then how much harder is it to get the necessary levels of support if you are not a student or post grad researcher. I am certainly not happy that it is supposedly available from access to work because knowing what I do of DWP bureacreacy we may be in chocolate teapot territory, and the brochure writers fantasy land.
In essence what we need is a research participants package, something guaranteed, something that should be part of every grant that is given for research.
Behind my own doctorate which I am so recently celebrating there is long back story. There are the things I was able to do because I could access support through DSA, but often a backstory of how hard you sometimes have to argue for them to be included as an academic need, which I could go into more another time.
There were costs, there were same costs that every student has, that is the fees and the transport and subsistence costs, but beyond that I paid over the years considerably more in fees, transport and subsistence costs to be an effective part of a wider community, to attend conferences for which you are expected to fund yourself even if you are presenting a paper and much else.
The only reason you ever see my name anywhere is because I have purchased a seat at the negotiating table as it were, and that cannot be right. Advocacy may be given freely but there is always a hidden and forgotten cost.
So you can see where this is leading, beyond the explicit identifying of those things that we individually need, there is the need to build in the cost of that and to say without it research is not anything like as valid as the results may serve to indicate.
We need funders to recognise this, and we need a drive to make this as fundamentally important as the funding of electricity bill for a physics lab.
On Day One of the seminar, Susy Ridout facilitated a workshop, designed to help attendees communicate and express their thoughts on ‘participation’ by using everyday materials. These are some of the things people came up with ...
What ONE thing do you now know about ‘participation’?
First thing on the second day of the seminar, attendees were asked to think about one thing that they had learnt about participation from the previous day and to write it on a postcard.
Later in the day, we briefly analysed attendees’ responses and identified the following themes:
Priorities of research – more funding towards the “things that autistic people care about” and valuing “different ways of knowing”
Representation – of autistic people on boards of funding bodies “balance of autistic and learning disability”, children and young people (not just adults)
Ways of working – authentic interactions, transparency, “recognising everyone’s expertise”, ”learning to appreciate and value our autistic input”, understanding, respect
Degrees/different forms of participation – “more than one way”, “means many things”, “different flavours”, a continuum, autistic-led/co-led research
Opportunities/impact of participation – empowerment, “giving previously-unheard people a voice”, putting “social justice and ethics at the heart of research”, “better work”, different perspective
Challenges to participation – getting away from “us versus them”, power imbalances, “researchers are enthusiastic but unsure how to make it work”, a “lot of goodwill” but “what about those not invited or not motivated to engage in these discussions”
