Making the future together: shaping autism research through meaningful participation

Added on 15/08/2024

Type de contenu

Journal article of the type Report ( ; english)

Sue Fletcher-Watson , Jon Adams * , Kabie Brook * , Tony Charman , Laura Crane , James Cusack * , Susan Leekam , Damian Milton * , Jeremy Parr , Elizabeth Pellicano
Making the future together: shaping autism research through meaningful participation published in the journal "Autism" n°23, vol.4, 11 pages , doi: 10.1177/1362361318786721

*Four co-authors had publicly identified as autistic. [Learn more about this mention]

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Summary/Presentation

Participatory research methods connect researchers with relevant communities to achieve shared goals. These methods can deliver results that are relevant to people’s lives and thus likely to have a positive impact. In the context of a large and growing body of autism research, with continued poor implementation, and some evidence of community dissatisfaction, there is a powerful case for participatory autism research. In order to develop a framework for such collaborative working, a UK seminar series was organised and co-produced by autistic and non-autistic people with academic, practitioner and lived expertise. This article reports on the outcomes from the series, identifying five topics relevant to building a community of practice in participatory research: Respect, Authenticity, Assumptions, Infrastructure and Empathy. Each topic is connected to a specific example from within and beyond research, to inspire new practices in the field. We call for the development of participatory research skills among the autism research community and the facilitation of greater autistic leadership of, and partnership in, research. Such work, if delivered to a high standard, is likely to lead to better translation into practice and improved outcomes for autistic people and those who support them.

For your information:

(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

  • Luigi Alleva (2006). "Taking time to savour the rewards of slow science". Nature, 443(7109), doi:10.1038/443271a

  • Lucy Arnold* (2012). "Introduction to Autonomy: The Critical Journal of Interdisciplinary Autism Studies". Autonomy: The Critical Journal of Interdisciplinary Autism Studies, 1(1).

  • Sherry Arnstein (1969). "A ladder of citizen participation". Journal of the American Institute of Planners, 35(4), doi:10.1080/01944366908977225

  • Luke Beardon (2017). Autism and Asperger Syndrome in Adults. London: Sheldon Press.

  • Joanna Brett, Sandy Staniszewska, Carol Mockford, et al. (2014). "Mapping the impact of patient and public involvement on health and social care research: a systematic review". Health Expectations, 17(5), doi:10.1111/j.1369-7625.2012.00795.x

  • Sarah Carrington, Marcella Uljarević, Ashley Roberts, et al. (2016). "Knowledge acquisition and research evidence in autism: researcher and practitioner perspectives and engagement". Research in Developmental Disabilities, 51, doi:10.1016/j.ridd.2015.07.010

  • Harry Collins, Robert Evans (2002). "The third wave of science studies: studies of expertise and experience". Social Studies of Science, 32(2), doi:10.1177/0306312702032002003

  • Andrea Cornwall, Rachel Jewkes (1995). "What is participatory research?" Social Science & Medicine, 41(12), doi:10.1016/0277-9536(95)00127-s

  • Lizzie Crane, Felicity Adams, Gemma Harper, et al. (2018). "‘Something needs to change’: Mental health experiences of young autistic adults in England". Autism, doi:10.1177/1362361318757048

  • James Cusack*, Rose Sterry (2016). Your Questions: Shaping Future Autism Research. London: Autistica.

  • Michelle Dawson*, Laurent Mottron (2011). "Do autistics have cognitive strengths? Should ASC be defined as disorders?" In: Sven Bölte, Joachim Hallmayer (eds) Autism Spectrum Conditions: FAQs on Autism, Asperger Syndrome and Atypical Autism Answered by International Experts. Gottingen: Hogrefe.

  • Sue Fletcher-Watson, Kate Larsen, Enza Salomone, et al. (2017b). "What do parents of children with autism expect from participation in research? A community survey about early autism studies". Autism, doi:10.1177/1362361317742506

  • Christoph Frauenberger, Judith Good, Andrew Alcorn, et al. (2013). "Conversing through and about technologies: design critique as an opportunity to engage children with autism and broaden research(er) perspectives". International Journal of Child-Computer Interaction, 1(2), doi:10.1016/j.ijcci.2013.02.002

  • Kathy Gaudion, Ann Hall, Jeremy Myerson, et al. (2014). "Design and wellbeing: bridging the empathy gap between neurotypical designers and autistic adults". Design for Sustainable Wellbeing and Empowerment, doi:10.13140/2.1.1934.7200

  • Morton Ann Gernsbacher (2017). "Editorial perspective: the use of person-first language in scholarly writing may accentuate stigma". Journal of Child Psychology and Psychiatry, 58(7), doi:10.1111/jcpp.12706

  • Roy Richard Grinker, Nicky Chambers, Ncyla Njongwe, et al. (2012). "‘Communities’ in community engagement: lessons learned from autism research in South Korea and South Africa". Autism Research, 5(3), doi:10.1002/aur.1229

  • Angie Hart, Catherine Davies, Karin Aumann, et al. (2013). "Mobilising knowledge in community-university partnerships: what does a community of practice approach contribute?" Contemporary Social Science, 8(3), doi:10.1080/21582041.2013.767470

  • Interagency Autism Coordinating Committee (2012). IACC/OARC autism spectrum disorder publications analysis: the global landscape of autism research. Washington, DC: US Department of Health and Human Services.

  • Barbara Israel, Edith Parker, Zachary Rowe, et al. (2005). "Community-based participatory research: lessons learned from the Centres for Children’s Environmental Health and Disease Prevention Research". Environmental Health Perspectives, 113(10), doi:10.1289/ehp.7675

  • Wendy Lawson*, Tanya Turner, Alyssa Wilkinson, et al. (2017). Love, Partnership, or Singleton on the Autism Spectrum. London: Jessica Kingsley Publishers.

  • Jeremy Long, Anna Clarkson (2017). "Towards meaningful participation in research and support practice: effecting change in autism services". In: Damian Milton, Nicola Martin (eds) Autism and Intellectual Disability in Adults, vol. 2. Hove: Pavilion Publishing.

  • Jeremy Long, Jim Panese, Jennifer Ferguson, et al. (2017). "Enabling voice and participation in autism services: using practitioner research to develop inclusive practice". Good Autism Practice, 18(2).

  • Thomas Lorenz, Carsten Frischling, Roland Cuadros, et al. (2016). "Autism and overcoming job barriers: comparing job-related barriers and possible solutions in and outside of autism-specific employment". PLoS ONE, 11(1), doi:10.1371/journal.pone.0147040

  • Katherine McDonald, Erin Stack (2016). "You say you want a revolution: an empirical study of community-based participatory research with people with developmental disabilities". Disability and Health Journal, 9(2), doi:10.1016/j.dhjo.2015.12.006

  • Nicola Martin (2010). "Minimising the stress of the PhD viva for students with Asperger syndrome". Good Autism Practice, 11(1).

  • Dawn Mason, Helen McConachie, David Garland, et al. (2018). "Predictors of quality of life for autistic adults". Autism Research, doi:10.1002/aur.1954

  • Helen McConachie, Dawn Mason, Jeremy Parr, et al. (2018). "Enhancing the validity of a quality of life measure for autistic people". Journal of Autism and Developmental Disorders, 48(5), doi:10.1007/s10803-017-3447-z

  • Damian Milton*, Maureen Bracher (2013). "Autistics speak but are they heard?" Journal of the BSA Medsoc Group, 7.

  • Damian Milton* (2016). Educational Discourse and the Autistic Student: A Study Using Q-sort Methodology. PhD Dissertation, University of Birmingham, Birmingham.

  • David Murray* (ed.) (2005). Coming Out Asperger. London: Jessica Kingsley Publishers.

  • Nicola Nelson, Sue Wright (1995). Power and Participatory Development: Theory and Practice. London: ITDG Publishing.

  • Christina Nicolaidis, Dora Raymaker* (2015). "Community based participatory research with communities defined by race, ethnicity, and disability: translating theory to practice". In: Hilary Bradbury (ed.) The SAGE Handbook of Action Research. Thousand Oaks, CA: SAGE.

  • Jeremy Parr (2016). "How can we learn more about the lives of adults on the autism spectrum from across the age range, and their relatives?" In: Susan Wright (ed.) Autism Spectrum Disorder in Mid and Later Life. London: Jessica Kingsley Publishers.

  • Sarah Parsons, Sue Cobb (2013). Who Chooses What I Need? Child Voice and User-involvement in the Development of Learning Technologies for Children with Autism. Swindon: EPSRC Observatory for Responsible Innovation in ICT.

  • Sarah Parsons, Tony Charman, Rebecca Faulkner, et al. (2013). "Commentary – bridging the research and practice gap in autism: the importance of creating research partnerships with schools". Autism, 17(3), doi:10.1177/1362361312472068

  • Elizabeth Pellicano (2018). "Engaging ‘seldom heard’ individuals in participatory autism research". In: Damian Milton, Nicola Martin (eds) Autism and Learning Disability Annual, vol. 2. London: Pavilion Publishing.

  • Dora Raymaker*, Christina Nicolaidis (2013). "Participatory research with autistic communities: shifting the system". In: Joyce Davidson, Michael Orsini (eds) Worlds of Autism: Across the Spectrum of Neurological Difference. Minneapolis, MN: University of Minnesota Press.

  • Samuel Ridout (2014). "More than picture-making: reflecting on collage as a narrative tool for opening discourse on the involvement of autistics in autism research". Autonomy: The Critical Journal of Interdisciplinary Autism Studies, 1(3). Retrieved from (Source)

  • Samuel Ridout (2018). Autism and Mental Well-being in Higher Education: A Practical Resource for Students, Mentors and Study Skills Support Workers. Hove: Pavilion Publishing and Media.

  • Samuel Ridout, Mark Edmondson (2017). "Cygnet mentoring project: combined experiences from a mentor and a mentee". Autonomy: The Critical Journal of Interdisciplinary Autism Studies, 1(5). Retrieved from (Source)

  • David Rose (2003). "Collaborative research between users and professionals: peaks and pitfalls". The Psychiatrist, 27(11), doi:10.1192/pb.27.11.404

  • Joanne Scott-Barrett, Kirsty Cebula, Lani Florian (2018). "Listening to young people with autism: learning from researcher experiences". International Journal of Research & Method in Education, doi:10.1080/1743727x.2018.1462796

  • Elizabeth Sheppard, Diana Pillai, Gloria Wong, et al. (2016). "How easy is it to read the minds of people with autism spectrum disorder?" Journal of Autism and Developmental Disorders, 46(4), doi:10.1007/s10803-015-2655-8

  • Chloe Silverman, Jeffrey Brosco (2007). "Understanding autism: parents and paediatricians in historical perspective". Archives of Paediatrics & Adolescent Medicine, 161(4), doi:10.1001/archpedi.161.4.392

  • Jim Sinclair (2013). "Why I dislike ‘person first’ language". Autonomy: The Critical Journal of Interdisciplinary Autism Studies, 1(2). Retrieved from (Source)

  • Aubyn Stahmer, Alaitz Aranbarri, Alexandra Drahota, et al. (2017). "Towards a more collaborative research culture: extending translational science from research to community and back again". Autism, 21, doi:10.1177/1362361316680177

  • Jonathan Tritter, Ann McCallum (2006). "The snakes and ladders of user involvement: moving beyond Arnstein". Health Policy, 76(2), doi:10.1016/j.healthpol.2005.05.008

  • Connie Wright, Sharon Wright, Matthew Diener, et al. (2014). "Autism spectrum disorder and the applied collaborative approach: a review of community based participatory research and participatory action research". Journal of Autism, 1(1).

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