From anonymous subject to engaged stakeholder: Enriching participant experience in autistic-language-use research

Authors

Abstract

The Talking Together community-engagement pilot project brought together pairs of autistic and non-autistic strangers to: (1) talk about their experiences of loneliness in their local city; and (2) think about potential, co-produced responses to the problem. The project had evolved as a secondary aim, from an initial need to acquire naturalistic conversation data for my linguistic PhD research investigating a theoretical reframing of autistic language use as ‘different’ rather than ‘deficient’. The desire to make the data collection a meaningful experience for the participants in its own right was central to the research design, and so the Talking Together loneliness project was devised as a way to achieve this. However, it was not until the research was under way that the potential for valuable, immediate impact became apparent. This article reflects on the successes and challenges of the Talking Together pilot as a piece of autistic-led participatory research, and explores how the principles of engaged, participatory research can be applied so as to maximize impact, even where engagement may not be a primary aim. It also explores the ‘participatory’ nature of participatory research where the researcher belongs to the marginalized stakeholder group.

1. Damian Milton *Autistic author. Learn more… (2012). On the ontological status of autism: the ‘double empathy problem’ . Disability & Society, 27(6), 883-887. Informa UK Limited.

   Type: Article DOI: 10.1080/09687599.2012.710008 OpenAlex: https://openalex.org/W1968949608

   AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
2. Nancy Bagatell (2010). From cure to community: Transforming notions of autism . Ethos, 38(1), 33. Wiley.

   Type: Article DOI: 10.1111/j.1548-1352.2009.01080.x OpenAlex: https://openalex.org/W2085448344

   Crossref OpenAlex OpenCitations
3. Sue Fletcher-Watson , Francesca Happé (2019). Autism . Routledge.

   Type: Book DOI: 10.4324/9781315101699 OpenAlex: https://openalex.org/W4237621835

   Crossref OpenAlex OpenCitations
4. Francesca Happé (1993). Communicative competence and theory of mind in autism: A test of relevance theory . Cognition, 48(2), 101-119. Elsevier BV.

   Type: Article DOI: 10.1016/0010-0277(93)90026-r OpenAlex: https://openalex.org/W1976589030

   Crossref OpenAlex OpenCitations
5. C Barnham , Nicola Martin (2017). Considering employment of young people with intellectual impairment and autism leaving school and college . Autism and Intellectual Disability in Adults, 2(1), 53.

   Type: Article OpenAlex: https://openalex.org/W2906692942

   Crossref OpenAlex
6. Kirsten Stalker , Katherine McArthur (2012). Child abuse, child protection and disabled children: a review of recent research . Child Abuse Review, 21(1), 24-40. Wiley.

   Type: Article DOI: 10.1002/car.1154 OpenAlex: https://openalex.org/W2169843543

   Crossref OpenAlex OpenCitations
7. Soile Loukusa , Eeva Leinonen , Sanna Kuusikko , Katja Jussila , Marja-Leena Mattila , Nuala Ryder et al. (2007). Use of Context in Pragmatic Language Comprehension by Children with Asperger Syndrome or High-Functioning Autism . Journal of Autism and Developmental Disorders, 37(6), 1049-1059. Springer Science and Business Media LLC.

   Type: Article DOI: 10.1007/s10803-006-0247-2 OpenAlex: https://openalex.org/W1992908066

   Crossref OpenAlex OpenCitations
8. Simon Baron-Cohen , Alan M. Leslie , Uta Frith (1985). Does the autistic child have a “theory of mind”? Cognition, 21(1), 37-46. Elsevier BV.

   Type: Article DOI: 10.1016/0010-0277(85)90022-8 OpenAlex: https://openalex.org/W2093410327

   Crossref OpenAlex OpenCitations
9. Elizabeth Sheppard , Dhanya Pillai , Genevieve Tze-Lynn Wong , Danielle Ropar , Peter Mitchell (2016). How Easy is it to Read the Minds of People with Autism Spectrum Disorder? Journal of Autism and Developmental Disorders, 46(4), 1247-1254. Springer Science and Business Media LLC.

   Type: Article DOI: 10.1007/s10803-015-2662-8 OpenAlex: https://openalex.org/W2175842555

   Crossref OpenAlex OpenCitations
10. Julie Causton-Theoharis , Christine Ashby , Meghan Cosier (2009). Islands of Loneliness: Exploring Social Interaction Through the Autobiographies of Individuals With Autism . Intellectual and Developmental Disabilities, 47(2), 84-96. Informa UK Limited.

    Type: Article DOI: 10.1352/1934-9556-47.2.84 OpenAlex: https://openalex.org/W1995863584

    Crossref OpenAlex OpenCitations
11. L. Beardon (2017). Autism and Asperger Syndrome in Adults . Autism and Asperger Syndrome in Adults.

    Type: Other

    Crossref
12. Anna Wong , Anson K. C. Chau , Yang Fang , Jean Woo (2017). Illuminating the Psychological Experience of Elderly Loneliness from a Societal Perspective: A Qualitative Study of Alienation between Older People and Society . International Journal of Environmental Research and Public Health, 14(7), 824. MDPI AG.

    Type: Article DOI: 10.3390/ijerph14070824 OpenAlex: https://openalex.org/W2736373979

    Crossref OpenAlex OpenCitations
13. Julianne Holt-Lunstad , Timothy B. Smith , J. Bradley Layton (2010). Social Relationships and Mortality Risk: A Meta-analytic Review . PLoS Medicine, 7(7), e1000316. Public Library of Science (PLoS).

    Type: Article DOI: 10.1371/journal.pmed.1000316 OpenAlex: https://openalex.org/W2003490123

    Crossref OpenAlex OpenCitations
14. Hannah Bertilsdotter Rosqvist *Autistic author. Learn more… , Marianthi Kourti *Autistic author. Learn more… , David Jackson‐Perry , Charlotte Brownlow , Kirsty Fletcher , Daniel Bendelman *Autistic author. Learn more… et al. (2019). Doing it differently: emancipatory autism studies within a neurodiverse academic space . Disability & Society, 34(7-8), 1082-1101. Informa UK Limited.

    Type: Article DOI: 10.1080/09687599.2019.1603102 OpenAlex: https://openalex.org/W2946818498

    AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
15. John G. McGraw (1995). Loneliness, its nature and forms: an existential perspective . Man and World, 28(1), 43-64. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/bf01278458 OpenAlex: https://openalex.org/W2017738620

    Crossref OpenAlex OpenCitations
16. Georgina Binnie (2019). Loneliness and the letter: Co-developing cross-generational letter writing with higher education students and older people . Research for All, 3(1), 59. UCL Press.

    Type: Article DOI: 10.18546/rfa.03.1.06 OpenAlex: https://openalex.org/W2911748209

    Crossref OpenAlex OpenCitations
17. Elinor Ochs , Olga Solomon (2010). Autistic Sociality . Ethos, 38(1), 69-92. Wiley.

    Type: Article DOI: 10.1111/j.1548-1352.2009.01082.x OpenAlex: https://openalex.org/W4243094908

    Crossref OpenAlex OpenCitations
18. H. H. Stonnington (1998). Nothing About Us Without Us: Disability Oppression and Empowerment . JAMA: The Journal of the American Medical Association, 280(16), 1456-a-1457. American Medical Association (AMA).

    Type: Article DOI: 10.1001/jama.280.16.1456-a OpenAlex: https://openalex.org/W2064359986

    OpenAlex
19. Rebecca Brewer , Federica Biotti , Caroline Catmur , Clare Press , Francesca Happé , Richard Cook et al. (2016). Can Neurotypical Individuals Read Autistic Facial Expressions? Atypical Production of Emotional Facial Expressions in Autism Spectrum Disorders . Autism Research, 9(2), 262-271. Wiley.

    Type: Article DOI: 10.1002/aur.1508 OpenAlex: https://openalex.org/W2159450620

    Crossref OpenAlex OpenCitations
20. Noah Sasson , Daniel J. Faso , Jack Nugent , Sarah Lovell , Daniel P. Kennedy , Ruth B. Grossman (2017). Neurotypical Peers are Less Willing to Interact with Those with Autism based on Thin Slice Judgments . Scientific Reports, 7(1), 40700. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1038/srep40700 OpenAlex: https://openalex.org/W2585989266

    Crossref OpenAlex OpenCitations
21. Laura Sterponi , Kenton de Kirby (2016). A Multidimensional Reappraisal of Language in Autism: Insights from a Discourse Analytic Study . Journal of Autism and Developmental Disorders, 46(2), 394-405. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-015-2679-z OpenAlex: https://openalex.org/W2299102888

    Crossref OpenAlex OpenCitations
22. Coralie Chevallier , Gregor Kohls , Vanessa Troiani , Edward S. Brodkin , Robert T. Schultz (2012). The social motivation theory of autism . Trends in Cognitive Sciences, 16(4), 231-239. Elsevier BV.

    Type: Article DOI: 10.1016/j.tics.2012.02.007 OpenAlex: https://openalex.org/W2091028497

    Crossref OpenAlex OpenCitations
23. Charlton (1998). Nothing about Us Without Us: Disability Oppression and Empowerment . Nothing about Us without Us: Disability oppression and empowerment.

    Type: Other

    Crossref
24. Francesca Happé , Uta Frith (2020). Annual Research Review: Looking back to look forward – changes in the concept of autism and implications for future research . Journal of Child Psychology and Psychiatry, 61(3), 218-232. Wiley.

    Type: Article DOI: 10.1111/jcpp.13176 OpenAlex: https://openalex.org/W3003423347

    Crossref OpenAlex OpenCitations
25. Kerrianne E Morrison , Kilee M. DeBrabander , Daniel J Faso , Noah Sasson (2019). Variability in first impressions of autistic adults made by neurotypical raters is driven more by characteristics of the rater than by characteristics of autistic adults . Autism, 23(7), 1817-1829. SAGE Publications.

    Type: Article DOI: 10.1177/1362361318824104 OpenAlex: https://openalex.org/W2922100205

    Crossref OpenAlex OpenCitations
26. Christina Nicolaidis , Dora M. Raymaker *Autistic author. Learn more… , Katherine McDonald , Sebastian Dern *Autistic author. Learn more… , Elesia Ashkenazy *Autistic author. Learn more… , W. Cody Boisclair *Autistic author. Learn more… et al. (2011). Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates . Progress in Community Health Partnerships: Research, Education, and Action, 5(2), 143-150. Project MUSE.

    Type: Article DOI: 10.1353/cpr.2011.0022 OpenAlex: https://openalex.org/W2112020878

    AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
27. Nicholas Chown *Autistic author. Learn more… , Luke Beardon , Nicola Martin , Susanne D. Ellis (2016). Examining intellectual prowess, not social difference: Removing barriers from the doctoral viva for autistic candidates . Journal of Inclusive Practice in Further and Higher Education, 6(1), 22.

    Type: Article OpenAlex: https://openalex.org/W2713994475

    Crossref OpenAlex
28. Meng-Chuan Lai , Simon Baron-Cohen (2015). Identifying the lost generation of adults with autism spectrum conditions . The Lancet Psychiatry, 2(11), 1013. Elsevier BV.

    Type: Article DOI: 10.1016/s2215-0366(15)00277-1 OpenAlex: https://openalex.org/W2128937542

    Crossref OpenAlex OpenCitations
29. Nicholas Chown *Autistic author. Learn more… , Jackie Robinson , Luke Beardon , Jillian Downing , Elizabeth Hughes *Autistic author. Learn more… , Julia Leatherland *Autistic author. Learn more… et al. (2017). Improving research about us, with us: a draft framework for inclusive autism research . Disability & Society, 32(5), 720-734. Informa UK Limited.

    Type: Article DOI: 10.1080/09687599.2017.1320273 OpenAlex: https://openalex.org/W2610206486

    AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
30. Kris Southby (2017). Reflecting on (the challenge of) conducting participatory research as a research-degree student . Research for All, 1(1), 128. UCL Press.

    Type: Article DOI: 10.18546/rfa.01.1.10 OpenAlex: https://openalex.org/W2580088322

    Crossref OpenAlex OpenCitations
31. Karen Gainer Sirota (2010). Narratives of Distinction: Personal Life Narrative as a Technology of the Self in the Everyday Lives and Relational Worlds of Children with Autism . Ethos, 38(1), 93-115. Wiley.

    Type: Article DOI: 10.1111/j.1548-1352.2009.01083.x OpenAlex: https://openalex.org/W2131383628

    Crossref OpenAlex OpenCitations
32. Sue Fletcher-Watson , Jonathan Adams *Autistic author. Learn more… , Kabie Brook *Autistic author. Learn more… , Tony Charman , Laura Crane , James Cusack *Autistic author. Learn more… et al. (2019). Making the future together: Shaping autism research through meaningful participation . Autism, 23(4), 943-953. SAGE Publications.

    Type: Article DOI: 10.1177/1362361318786721 OpenAlex: https://openalex.org/W2807975560

    AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
33. Brett Heasman *Autistic author. Learn more… , Alex Gillespie (2018). Perspective-taking is two-sided: Misunderstandings between people with Asperger’s syndrome and their family members . Autism, 22(6), 740-750. SAGE Publications.

    Type: Article DOI: 10.1177/1362361317708287 OpenAlex: https://openalex.org/W2727105378

    Crossref OpenAlex OpenCitations
34. Helen Tager‐Flusberg (1999). A psychological approach to understanding the social and language impairments in autism . International Review of Psychiatry, 11(4), 325-334. Informa UK Limited.

    Type: Article DOI: 10.1080/09540269974203 OpenAlex: https://openalex.org/W2136699583

    Crossref OpenAlex OpenCitations
35. Elizabeth Pellicano , Will Mandy , Sven Bölte , Aubyn C. Stahmer , Julie Lounds Taylor , DAVID S. MANDELL (2018). A new era for autism research, and for our journal . Autism, 22(2), 82-83. SAGE Publications.

    Type: Article DOI: 10.1177/1362361317748556 OpenAlex: https://openalex.org/W2786011392

    Crossref OpenAlex OpenCitations
36. Laura Sterponi , Alessandra Fasulo (2010). “How to Go On”: Intersubjectivity and Progressivity in the Communication of a Child with Autism . Ethos, 38(1), 116-142. Wiley.

    Type: Article DOI: 10.1111/j.1548-1352.2009.01084.x OpenAlex: https://openalex.org/W2143363654

    Crossref OpenAlex OpenCitations
37. C. Hammond (2020). ‘Who feels lonely? The results of the world’s largest loneliness study’ .

    Type: Other

    Crossref
38. Patricia M Sullivan , John F Knutson (2000). Maltreatment and disabilities: a population-based epidemiological study . Child Abuse & Neglect, 24(10), 1257-1273. Elsevier BV.

    Type: Article DOI: 10.1016/s0145-2134(00)00190-3 OpenAlex: https://openalex.org/W2166651240

    Crossref OpenAlex OpenCitations
39. Wendy Rickard , Rachel Purtell (2011). Finding a way to pay in the UK: methods and mechanisms for paying service users involved in research . Disability & Society, 26(1), 33-48. Informa UK Limited.

    Type: Article DOI: 10.1080/09687599.2011.529665 OpenAlex: https://openalex.org/W2161245737

    Crossref OpenAlex OpenCitations
40. Nirit Haruvi-Lamdan , Danny Horesh , Shani Zohar , Meital Kraus , Ofer Golan (2020). Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions . Autism, 24(4), 884-898. SAGE Publications.

    Type: Article DOI: 10.1177/1362361320912143 OpenAlex: https://openalex.org/W3015082203

    Crossref OpenAlex OpenCitations
41. Damian Milton *Autistic author. Learn more… , Brett Heasman *Autistic author. Learn more… , Elizabeth Sheppard (2018). Double Empathy . In Encyclopedia of Autism Spectrum Disorders (pp. 1-8). Springer New York.

    Type: Book chapter DOI: 10.1007/978-1-4614-6435-8_102273-1 OpenAlex: https://openalex.org/W4234897114

    Crossref OpenAlex OpenCitations
42. Léo Kanner (1943). Autistic disturbances of affective contact . The Nervous Child, 2(3), 217.

    Type: Article OpenAlex: https://openalex.org/W2255119171

    Crossref OpenAlex
43. Nicole K Valtorta , Mona Kanaan , Simon Gilbody , Sara Ronzi , Barbara Hanratty (2016). Loneliness and social isolation as risk factors for coronary heart disease and stroke: systematic review and meta-analysis of longitudinal observational studies . Heart, 102(13), 1009-1016. BMJ.

    Type: Article DOI: 10.1136/heartjnl-2015-308790 OpenAlex: https://openalex.org/W2336497595

    Crossref OpenAlex OpenCitations
44. Laura Hull , K.V. Petrides , Carrie T. Allison , P. Smith , Simon Baron-Cohen , Meng-Chuan Lai et al. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions . Journal of Autism and Developmental Disorders, 47(8), 2519-2534. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-017-3166-5 OpenAlex: https://openalex.org/W2616560149

    Crossref OpenAlex OpenCitations
45. (2010). Payment for Involvement: A guide for making payments to members of the public actively involved in NHS, public health and social care research . Payment for Involvement: A guide for making payments to members of the public actively involved in NHS, public health and social care research.

    Type: Other

    Crossref
46. Mark S. Reed , Sophie Duncan , Paul Manners , Diana Pound , Lucy Armitage , Lynn Frewer et al. (2018). A common standard for the evaluation of public engagement with research . Research for All, 2(1), 143. UCL Press.

    Type: Article DOI: 10.18546/rfa.02.1.13 OpenAlex: https://openalex.org/W2791755946

    Crossref OpenAlex OpenCitations
47. Damian Milton *Autistic author. Learn more… , Michael Bracher (2013). Autistics speak but are they heard? Med Sociol online, 7(2), 61.

    Type: Article OpenAlex: https://openalex.org/W2337764906

    Crossref OpenAlex
48. Vikram K. Jaswal , Nameera Akhtar (2019). Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism . Behavioral and Brain Sciences, 42, e82. Cambridge University Press (CUP).

    Type: Article DOI: 10.1017/s0140525x18001826 OpenAlex: https://openalex.org/W2809138493

    Crossref OpenAlex OpenCitations
49. S. A. Hassani , M. Oemisch , M. Balcarras , S. Westendorff , S. Ardid , M. A. van der Meer et al. (2017). A computational psychiatry approach identifies how alpha-2A noradrenergic agonist Guanfacine affects feature-based reinforcement learning in the macaque . Scientific Reports, 7(1), 40606-40606. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1038/srep40606 OpenAlex: https://openalex.org/W2578577905

    OpenAlex
50. Dilip V. Jeste , Ellen E. Lee , Stephanie Cacioppo (2020). Battling the Modern Behavioral Epidemic of Loneliness . JAMA Psychiatry, 77(6), 553. American Medical Association (AMA).

    Type: Article DOI: 10.1001/jamapsychiatry.2020.0027 OpenAlex: https://openalex.org/W3009481811

    Crossref OpenAlex OpenCitations
51. Jill Stauffer (2015). Ethical Loneliness . Columbia University Press.

    Type: Book DOI: 10.7312/columbia/9780231171502.001.0001 OpenAlex: https://openalex.org/W4254331790

    Crossref OpenCitations
52. Nicola Martin (2017). Encouraging disabled leaders in higher education: recognising hidden talents . Research Open (London South Bank University).

    Type: Article OpenAlex: https://openalex.org/W2613450480

    Crossref OpenAlex
53. Christina Nicolaidis , Dora M. Raymaker *Autistic author. Learn more… , Steven K. Kapp *Autistic author. Learn more… , Mel Baggs *Autistic author. Learn more… , Elesia Ashkenazy *Autistic author. Learn more… , Katherine McDonald et al. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants . Autism, 23(8), 2007-2019. SAGE Publications.

    Type: Article DOI: 10.1177/1362361319830523 OpenAlex: https://openalex.org/W2926826419

    AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
54. David Jackson‐Perry (2017). Autism and Asperger syndrome in adults . Disability & Society, 32(8), 1280-1282. Informa UK Limited.

    Type: Article DOI: 10.1080/09687599.2017.1362181 OpenAlex: https://openalex.org/W2742673435

    OpenAlex
55. (2018). ‘Hidden crisis: Autistic people four times more likely to be lonely than general public’ .

    Type: Other

    Crossref
56. Richard Woods *Autistic author. Learn more… , Damian Milton *Autistic author. Learn more… , Larry R. Arnold *Autistic author. Learn more… , Steve Graby *Autistic author. Learn more… (2018). Redefining Critical Autism Studies: a more inclusive interpretation . Disability & Society, 33(6), 974-979. Informa UK Limited.

    Type: Article DOI: 10.1080/09687599.2018.1454380 OpenAlex: https://openalex.org/W2795182466

    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
57. Elizabeth Pellicano (2020). Commentary: Broadening the research remit of participatory methods in autism science – a commentary on Happé and Frith (2020) . Journal of Child Psychology and Psychiatry, 61(3), 233-235. Wiley.

    Type: Article DOI: 10.1111/jcpp.13212 OpenAlex: https://openalex.org/W3007890588

    AutiHub · Documentation center Crossref OpenAlex OpenCitations
58. Elizabeth Pellicano (2017). Participatory Autism Research: A starter pack . Participatory Autism Research: A starter pack.

    Type: Other

    Crossref
59. D. Perlman (1981). ‘Toward a social psychology of loneliness’ .

    Type: Other

    Crossref
60. Jill Stauffer (2015). Ethical Loneliness . Columbia University Press.

    Type: Book DOI: 10.7312/stau17150 OpenAlex: https://openalex.org/W4381326390

    OpenAlex
61. I. Taylor (2011). Access to Social Care for Adults with Autistic Spectrum Conditions . Access to Social Care for Adults with Autistic Spectrum Conditions.

    Type: Other

    Crossref
62. Winnicott (1971). Playing and Reality . Playing and Reality.

    Type: Other

    Crossref