Posts tagged participation
New Publication: Shaping Autism Research UK
Over the course of three years (2015-2017), the Shaping Autism Research seminar series (#ShapeARUK), funded by the ESRC: Economic and Social Research Council, was organised by autistic and non-autistic people and aimed at determining if/how we should make autism research more participatory.
In August 2018, a paper reporting on this seminar series was published in the journal Autism.
On Day Two of the London ESRC seminar, participants divided into groups to discuss how we can build capacity for (a) autistic people in developing skills in research and (b) early-career researchers* in developing skills in engaging the autistic community.
Below we briefly summarise the points raised by each of the groups with regard to potential opportunities and barriers, and ways we can work towards building capacity in both groups (which may not be mutually exclusive!).
“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.
Doing autism research well: Building a participatory framework for autism research
We were delighted to see so many people (around 70!) from a good mix of backgrounds and experiences come along to the 4th seminar in our ESRC Shaping Autism Research series. This particular seminar focused on autistic involvement in autism research, or participatory autism research.
Day One …
Next steps: beyond tokenism
The final discussion on Day Two focused on how we could move beyond tokenism, towards a participatory framework for autism research.
Attendees identified the following possible next steps to achieving this goal:
- Spread the word - on the Shaping Autism Research website, social media, possible publication, at national and international conferences (IMFAR)
- Developing guidance (e.g., Code of Practice)
- Developing cross-disciplinary networks (e.g., early-career, PARC)
- Linking to real world and other standards/policies/laws
- Creating partnerships with people outside academia
- Identifying ways to engage non-academic autistic people
- Deriving ways
to support autistic scholars in developing their academic careers
*Thanks to Damian Milton for reminding us of Token from South Park!
HUGE thank you!
- To all our attendees for taking part!
- To all the speakers, discussants and facilitators
- To ESRC (and MRC for turning up!) and UCL IOE
- To the Shaping Autism Research team: Liz Pellicano, Damian Milton, Sue Fletcher-Watson, Sue Leekam, Jeremy Parr and Peter Beresford
- To Mel Bovis, Lorcan Kenny, Dan Sinclair and the CRAE team for helping to put the seminar together
- To
the influence of the Autonomy journal, the Theorising
Autism Project, and Participatory Autism Research Collective (PARC)
What does ‘participation’ mean to you?
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”
Thank you for #ShapeARUK. It included enough #autistic & NT profs & non-academics to create a truly integrated event. More please
Participation slides - London seminars
You can download slides from most speakers at the London seminar here:
1. Damian Milton: Welcome
2. Liz Pellicano: A Future Made Together
3. Constantina Papoulias: Participatory methods in mental health research
4. Lisa Doughty & Katie Bogart: How can researchers build and sustain participatory partnerships? From the perspective of young people’s mental health
5. Sarah Lyall & Sandra Jacobs: Lessons in community research (also see report and podcast on mothers’ experiences of JobCentre Plus and report and creative outputs on in-work poverty)
6. Keynote: Christina Nicolaidis: Collaboration strategies in participatory research. AASPIRE and other examples
7. Damian Milton: Participatory autism research: Barriers and opportunities
8. Kathryn Adcock: Participatory research: A Medical Research Council perspective
9. James Cusack: How do - and can - funders support participatory autism research?
10. Chris Frauenberger: Outside the box: Rethinking assistive technologies for children with autism
11. Wendy Keay-Bright: Playful prototypes or … the art of non-verbal participation or … the joy of pointless
12. Larry Arnold: The myth of the lone researcher and notes
13. Leneh Buckle: From the committee to the laboratory: Autistic collaboration
14. Dinah Murray: Ethics, power, people, voice, autonomy
Participatory Autism Research - Fourth Seminar, London
We are delighted to announce the programme for our fourth Shaping Autism Research seminar, which is focused specifically on participatory autism research.
As you may well know, there has been a substantial increase in research activity on autism during the past decade. But little of this research has concentrated on the everyday needs of autistic people and even less has been shaped directly by autistic people and their families; read more here. Involving community members in research - from the very inception of an idea to research design to implementation and interpretation of findings - is one vital means of ensuring that more of the research that gets done has a direct and sustained impact on those who need it most.
The goals of this fourth seminar are therefore to:
1. Examine the different ways to conducting participatory research, drawing from such work both inside and outside the field of autism,
2. Discuss the opportunities and challenges to involving the autistic community in research, and
3. Determine ways to overcome any such challenges.
Please note that seminar places are extremely limited. The seminar will not be recorded but you can follow the discussions on Twitter @Autresearchuk, #shapeARUK
We look forward to seeing you there!
