Posts tagged autismandsociety
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
Autistic people and autistic and non-autistic academics working together
Image: courtesy of Robyn Steward
We need to understand how can we value, strengthen and celebrate areas of difference that have a meaningful and positive impact on their lives (and on others)
The Autism and Society seminars will focus upon questions such as: How can we ensure the inclusion of autistic people in society? What place should the autism community have in shaping the research agenda? How should we understand what ‘well-being’ means to autistic people and their families? What are the most effective ways to promote the self-advocacy and advocacy skills of autism community members?
The seminars in this Priority Area are led by Liz Pellicano and Damian Milton.
Social well-being seminar
Traditional medical models of well-being focused on the individual have not always served autistic people’s interests. Recent research and new community initiatives are beginning to highlight the important role social interactions and social structures play in the well-being of autistic people. These range from providing autistic-led spaces to new research on the importance of relationships in shaping the quality of life for autistic people.
The objective of this seminar is to examine the nature of autistic children, young people and adults’ social relationships, the way advantage and disadvantage is bestowed by society’s understandings of autism, and the ways in which autism research should be restructured to take account of our new appreciation of the limitations of an overly individualised approach to autism.
More details to follow soon …
Advocacy seminar
It is increasingly accepted that one of the most important ways to improve both autism research and the well-being of autistic people and their families is to expand opportunities for autistic people to become their own advocates and to be able to access good quality independent advocacy services.
‘Advocacy’ itself comes in many forms. The objective of the discussion in this seminar is to examine what autistic advocacy entails, how self-advocacy and community advocacy can be nurtured.
The discussion will be led by autistic activists andscholars, alongside parents of children on the spectrum, practitioners and advocacy organisations, and researchers in the fields of autism and advocacy.
More details to follow soon …