Understanding Autistic Adults' Use of Social Media

Authors

Abstract

Autism is a developmental condition that impacts 1 in 100 people \citeNationalAutisticSociety2021. It affects autistic people's interactional and sensory preferences and behaviours. Autistic people can find interactions difficult in part due to sensory overwhelm. Interacting online can provide a positive alternative that allows for interactions on their own terms. However, most social media platforms are designed by neurotypical standards and can therefore inhibit full participation by autistic users. We demonstrate through the analysis of 34 semi-structured interviews with autistic adults that current social media design is not sufficient for creating an inclusive environment and enabling participation from autistic adults. We identified six themes across the interviews: (1) 'Social Media compared to In-Person Interactions', (2) 'Social Media as Enabling/Overwhelming', (3) 'Perceived Social Norms', (4) 'Keeping Connected and Finding New Communities', (5) 'Keeping Control through Systematic Practices', and (6) 'Being Authentic'. The themes demonstrate the attention that autistic adults give to online interaction, suggesting that online interactions may be just as fraught as in-person interactions have been shown to be. In order to become more inclusive of autistic adults, we recommend that social media platforms expand low-effort participation features, provide increased control over algorithmic content, support expression of intent and tone, aid discovery of interactional norms, and reinforce interest-based sociality.

1. Simon Baron-Cohen (2001). Theory of mind in normal development and autism . Prisme, 34, 174.

   Type: Article OpenAlex: https://openalex.org/W18445372

   Crossref OpenAlex
2. Androutsopoulos Jannis (2008). Potentials and Limitations of Discourse-Centred Online Ethnography. Language@Internet 5, 8 . Potentials and Limitations of Discourse-Centred Online Ethnography. Language@Internet 5, 8.

   Type: Other

   Crossref
3. Belén Barros Pena , Nelya Koteyko , Martine van Driel *Autistic author. Learn more… , Andrea Delgado , John Vines (2023). "My Perfect Platform Would Be Telepathy" - Reimagining the Design of Social Media with Autistic Adults . Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems, 1-16. ACM.

   Type: Article DOI: 10.1145/3544548.3580673 OpenAlex: https://openalex.org/W4366550195

   AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
4. Nicole B. Ellison , Jessica Vitak (2015). Social Network Site Affordances and Their Relationship to Social Capital Processes . In The Handbook of the Psychology of Communication Technology (pp. 203-227). Wiley.

   Type: Book chapter DOI: 10.1002/9781118426456.ch9 OpenAlex: https://openalex.org/W1487170152

   Crossref OpenAlex OpenCitations
5. Jannis Androutsopoulos (2014). Moments of sharing: Entextualization and linguistic repertoires in social networking . Journal of Pragmatics, 73, 4-18. Elsevier BV.

   Type: Article DOI: 10.1016/j.pragma.2014.07.013 OpenAlex: https://openalex.org/W1970858827

   Crossref OpenAlex OpenCitations
6. Sirpa Leppanen (2016). Social Media Discourse, (Dis)identifications and Diversities . Routledge.

   Type: Book DOI: 10.4324/9781315624822 OpenAlex: https://openalex.org/W3008165435

   Crossref OpenAlex OpenCitations
7. 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 Scholars Crossref OpenAlex OpenCitations
8. (n.d.). M. E. Anzalone and G. G. Williamson. 2000. Sensory processing and motor perfromance in autism spectrum disorders. In Autism spectrum disorders: A transactional developmental perspective B. Prizant and A. Wetherby (Eds.). Paul H. Brooks Publishing Company Baltimore 143--166.

   Type: Other

   Crossref
9. Shaun Gallagher (2004). Understanding Interpersonal Problems in Autism: Interaction Theory as An Alternative to Theory of Mind . Philosophy, Psychiatry, & Psychology, 11(3), 199-217. Project MUSE.

   Type: Article DOI: 10.1353/ppp.2004.0063 OpenAlex: https://openalex.org/W2115438263

   Crossref OpenAlex OpenCitations
10. Nancy Bagatell (2007). Orchestrating voices: autism, identity and the power of discourse . Disability & Society, 22(4), 413-426. Informa UK Limited.

    Type: Article DOI: 10.1080/09687590701337967 OpenAlex: https://openalex.org/W2035465080

    Crossref OpenAlex OpenCitations
11. Eleanor R. Burgess , Kathryn E. Ringland , Jennifer Nicholas , Ashley A. Knapp , Jordan Eschler , David C. Mohr et al. (2019). "I think people are powerful" . Proceedings of the ACM on Human-Computer Interaction, 3(CSCW), 1-29. Association for Computing Machinery (ACM).

    Type: Article DOI: 10.1145/3359143 OpenAlex: https://openalex.org/W2985195296

    Crossref OpenAlex OpenCitations
12. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.

    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264

    Crossref OpenAlex OpenCitations
13. Christopher Barber (2017). Social media and autism spectrum conditions . Practice Nursing, 28(7), 292-298. Mark Allen Group.

    Type: Article DOI: 10.12968/pnur.2017.28.7.292 OpenAlex: https://openalex.org/W2734851637

    Crossref OpenAlex OpenCitations
14. Clodagh Murphy , C. Ellie Wilson , Dene M. Robertson , Christine Ecker , Eileen M. Daly , Neil Hammond et al. (2016). Autism spectrum disorder in adults: diagnosis, management, and health services development . Neuropsychiatric Disease and Treatment, Volume 12, 1669-1686. Informa UK Limited.

    Type: Article DOI: 10.2147/ndt.s65455 OpenAlex: https://openalex.org/W2464444303

    Crossref OpenAlex OpenCitations
15. P. John Clarkson , Roger Coleman (2015). History of Inclusive Design in the UK . Applied Ergonomics, 46, 235-247. Elsevier BV.

    Type: Article DOI: 10.1016/j.apergo.2013.03.002 OpenAlex: https://openalex.org/W1988577447

    Crossref OpenAlex OpenCitations
16. Louanne Boyd , Alejandro Rangel , Helen Tomimbang , Andrea Conejo-Toledo , Kanika Patel , Monica Tentori et al. (2016). SayWAT . Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, 4872-4883. ACM.

    Type: Article DOI: 10.1145/2858036.2858215 OpenAlex: https://openalex.org/W2402825495

    Crossref OpenAlex OpenCitations
17. Moira Burke , Robert Kraut , Diane Williams (2010). Social use of computer-mediated communication by adults on the autism spectrum . Proceedings of the 2010 ACM conference on Computer supported cooperative work, 425-434. ACM.

    Type: Article DOI: 10.1145/1718918.1718991 OpenAlex: https://openalex.org/W2033224063

    Crossref OpenAlex OpenCitations
18. Luka Kille-Speckter , Farnaz Nickpour (2022). The evolution of inclusive design: A first timeline review of narratives and milestones of design for disability . Proceedings of DRS. Design Research Society.

    Type: Article DOI: 10.21606/drs.2022.690 OpenAlex: https://openalex.org/W4283028223

    Crossref OpenAlex OpenCitations
19. Caroline Bell , Cara Fausset , Sarah Farmer , Julie Nguyen , Linda Harley , W. Bradley Fain (2013). Examining social media use among older adults . Proceedings of the 24th ACM Conference on Hypertext and Social Media, 158-163. ACM.

    Type: Article DOI: 10.1145/2481492.2481509 OpenAlex: https://openalex.org/W2034569006

    Crossref OpenAlex OpenCitations
20. Kristen Bottema‐Beutel , Steven K. Kapp *Autistic author. Learn more… , Jessica Nina Lester , Noah J. Sasson , Brittany N. Hand (2021). Avoiding Ableist Language: Suggestions for Autism Researchers . Autism in Adulthood, 3(1), 18-29. SAGE Publications.

    Type: Article DOI: 10.1089/aut.2020.0014 OpenAlex: https://openalex.org/W3083347663

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
21. (n.d.). e_1_2_1_9_1

    Type: Other DOI: 10.1016/j.destud Crossref: not found DataCite: not found

    Crossref
22. Danielle Miller , Jon Rees , Amy Pearson *Autistic author. Learn more… (2021). “Masking Is Life”: Experiences of Masking in Autistic and Nonautistic Adults . Autism in Adulthood, 3(4), 330-338. SAGE Publications.

    Type: Article DOI: 10.1089/aut.2020.0083 OpenAlex: https://openalex.org/W3162613655

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
23. Micah Mazurek (2013). Social media use among adults with autism spectrum disorders . Computers in Human Behavior, 29(4), 1709-1714. Elsevier BV.

    Type: Article DOI: 10.1016/j.chb.2013.02.004 OpenAlex: https://openalex.org/W2040955219

    Crossref OpenAlex OpenCitations
24. Charlotte Brownlow , Hanna Bertilsdotter Rosqvist *Autistic author. Learn more… , Lindsay O’Dell (2015). Exploring the potential for social networking among people with autism: challenging dominant ideas of ‘friendship’ . Scandinavian Journal of Disability Research, 17(2), 188-193. Stockholm University Press.

    Type: Article DOI: 10.1080/15017419.2013.859174 OpenAlex: https://openalex.org/W2045490287

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
25. Elinor Ochs , Olga Solomon (2004). Introduction: Discourse and Autism . Discourse Studies, 6(2), 139-146. SAGE Publications.

    Type: Article DOI: 10.1177/1461445604041763 OpenAlex: https://openalex.org/W2054812399

    Crossref OpenAlex OpenCitations
26. Amon Rapp , Federica Cena , Romina Castaldo , Roberto Keller , Maurizio Tirassa (2018). Designing technology for spatial needs: Routines, control and social competences of people with autism . International Journal of Human-Computer Studies, 120, 49-65. Elsevier BV.

    Type: Article DOI: 10.1016/j.ijhcs.2018.07.005 OpenAlex: https://openalex.org/W2885705362

    Crossref OpenAlex OpenCitations
27. Will Simm , Maria Angela Ferrario , Adrian Gradinar , Jon Whittle (2014). Prototyping 'clasp' . Proceedings of the 2014 conference on Designing interactive systems, 345-354. ACM.

    Type: Article DOI: 10.1145/2598510.2600880 OpenAlex: https://openalex.org/W2070784554

    Crossref OpenAlex OpenCitations
28. 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 Scholars AutiHub · Documentation center Crossref OpenAlex OpenCitations
29. Michele Zappavigna (2011). Ambient affiliation: A linguistic perspective on Twitter . New Media & Society, 13(5), 788-806. SAGE Publications.

    Type: Article DOI: 10.1177/1461444810385097 OpenAlex: https://openalex.org/W2106141635

    Crossref OpenAlex OpenCitations
30. Michele Zappavigna , J.R. Martin (2018). #Communing affiliation: Social tagging as a resource for aligning around values in social media . Discourse, Context & Media, 22, 4-12. Elsevier BV.

    Type: Article DOI: 10.1016/j.dcm.2017.08.001 OpenAlex: https://openalex.org/W2755133276

    Crossref OpenAlex OpenCitations
31. Olga Solomon (2004). Narrative introductions: discourse competence of children with autistic spectrum disorders . Discourse Studies, 6(2), 253-276. SAGE Publications.

    Type: Article DOI: 10.1177/1461445604041770 OpenAlex: https://openalex.org/W2151549663

    Crossref OpenAlex OpenCitations
32. Julia Cook , Laura Crane , Laura Bourne , Laura Hull , Will Mandy (2021). Camouflaging in an everyday social context: An interpersonal recall study . Autism, 25(5), 1444-1456. SAGE Publications.

    Type: Article DOI: 10.1177/1362361321992641 OpenAlex: https://openalex.org/W3129900907

    Crossref OpenAlex OpenCitations
33. Kathryn E. Ringland , Christine T. Wolf , Heather Faucett , Lynn Dombrowski , Gillian R. Hayes (2016). "Will I always be not social?" . Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, 1256-1269. ACM.

    Type: Article DOI: 10.1145/2858036.2858038 OpenAlex: https://openalex.org/W2404128142

    Crossref OpenAlex OpenCitations
34. Emanuel A. Schegloff (1987). Analyzing Single Episodes of Interaction: An Exercise in Conversation Analysis . Social Psychology Quarterly, 50(2), 101. SAGE Publications.

    Type: Article DOI: 10.2307/2786745 OpenAlex: https://openalex.org/W2331515936

    Crossref OpenAlex OpenCitations
35. Rafael F. Cordeiro , Williby S. Ferreira , Yuska P. C. Aguiar , Juliana A. G. Saraiva , Carole Tardif , Edith Galy (2018). The Brazilian Challenge to Accessibility and Digital Inclusion for People With Autistic Spectrum Disorders . Proceedings of the 17th Brazilian Symposium on Human Factors in Computing Systems, 1-9. ACM.

    Type: Article DOI: 10.1145/3274192.3274229 OpenAlex: https://openalex.org/W2896035451

    Crossref OpenAlex OpenCitations
36. Cara Ryan Idriss (2021). Invisible Autistic Infrastructure: Ethnographic Reflections on an Autistic Community . Medical Anthropology, 40(2), 129-140. Informa UK Limited.

    Type: Article DOI: 10.1080/01459740.2020.1849185 OpenAlex: https://openalex.org/W3099841821

    Crossref OpenAlex OpenCitations
37. Will Simm , Maria Angela Ferrario , Adrian Gradinar , Marcia Tavares Smith , Stephen Forshaw , Ian Smith et al. (2016). Anxiety and Autism . Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, 1270-1281. ACM.

    Type: Article DOI: 10.1145/2858036.2858259 OpenAlex: https://openalex.org/W2394610192

    Crossref OpenAlex OpenCitations
38. Catherine J. Crompton , Sonny Hallett *Autistic author. Learn more… , Danielle Ropar , Emma G. Flynn , Sue Fletcher‐Watson (2020). ‘I never realised everybody felt as happy as I do when I am around autistic people’: A thematic analysis of autistic adults’ relationships with autistic and neurotypical friends and family . Autism, 24(6), 1438-1448. SAGE Publications.

    Type: Article DOI: 10.1177/1362361320908976 OpenAlex: https://openalex.org/W3009630179

    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
39. Elliot Fox , Shane Baden , Justin Greene , Nick Ziegler , Moushumi Sharmin (2019). Connection: Assisting Neurodiverse Individuals in Forming Lasting Relationships Through a Digital Medium . Proceedings of the 21st International ACM SIGACCESS Conference on Computers and Accessibility, 633-635. ACM.

    Type: Article DOI: 10.1145/3308561.3354641 OpenAlex: https://openalex.org/W2981903714

    Crossref OpenAlex OpenCitations
40. (n.d.). e_1_2_1_19_1

    Type: Other DOI: 10.1093/oxfordhb/9780199589074 Crossref: not found DataCite: not found

    Crossref
41. Brett Heasman , Alex Gillespie (2019). Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding . Autism, 23(4), 910-921. SAGE Publications.

    Type: Article DOI: 10.1177/1362361318785172 OpenAlex: https://openalex.org/W2886786591

    Crossref OpenAlex OpenCitations
42. Kristen Gillespie-Lynch (2014). David Shane Smith, and Ted Hutman . David Shane Smith, and Ted Hutman.

    Type: Other

    Crossref
43. Nelya Koteyko , Martine van Driel *Autistic author. Learn more… , John Vines (2022). Autistic sociality on Twitter: Enacted affordances and affiliation strategies . Discourse & Communication, 16(4), 385-402. SAGE Publications.

    Type: Article DOI: 10.1177/17504813211070655 OpenAlex: https://openalex.org/W3207626830

    AutiHub · Autistic Scholars Crossref OpenCitations
44. Katta Spiel , Christopher Frauenberger , Os Keyes , Geraldine Fitzpatrick (2019). Agency of Autistic Children in Technology Research—A Critical Literature Review . ACM Transactions on Computer-Human Interaction, 26(6), 1-40. Association for Computing Machinery (ACM).

    Type: Article DOI: 10.1145/3344919 OpenAlex: https://openalex.org/W2988620880

    Crossref OpenAlex OpenCitations
45. Sarah Whatley (2019). Transcending Boundaries: Improvisation and Disability in Dance . Journal of International Crisis and Risk Communication Research.

    Type: Article DOI: 10.1093/oxfordhb OpenAlex: https://openalex.org/W2945900074 Crossref: not found DataCite: not found

    OpenAlex
46. Alicja Jedrzejewska , Jessica Dewey (2022). Camouflaging in Autistic and Non-autistic Adolescents in the Modern Context of Social Media . Journal of Autism and Developmental Disorders, 52(2), 630-646. Springer Science and Business Media LLC.

    Type: Article DOI: 10.1007/s10803-021-04953-6 OpenAlex: https://openalex.org/W3136678529

    Crossref OpenAlex OpenCitations
47. Annuska Zolyomi , Andrew Begel , Jennifer Frances Waldern , John Tang , Michael Barnett , Edward Cutrell et al. (2019). Managing Stress . Proceedings of the ACM on Human-Computer Interaction, 3(CSCW), 1-29. Association for Computing Machinery (ACM).

    Type: Article DOI: 10.1145/3359236 OpenAlex: https://openalex.org/W2970436446

    Crossref OpenAlex OpenCitations
48. Barbosa, Simone , Lampe, Cliff , Appert, Caroline , Shamma, David A. , Drucker, Steven , Williamson, Julie et al. (2022). CHI Conference on Human Factors in Computing Systems . ACM.

    Type: Other DOI: 10.1145/3491102 OpenAlex: https://openalex.org/W4226210603

    Crossref OpenAlex OpenCitations
49. Annuska Zolyomi , Ridley Jones , Tomer Kaftan (2020). #ActuallyAutistic Sense-Making on Twitter . Proceedings of the 22nd International ACM SIGACCESS Conference on Computers and Accessibility, 1-4. ACM.

    Type: Article DOI: 10.1145/3373625.3418001 OpenAlex: https://openalex.org/W3094699547

    Crossref OpenAlex OpenCitations
50. (n.d.). e_1_2_1_37_1

    Type: Other DOI: 10.1007/s10803-0152665--5 Crossref: not found DataCite: not found

    Crossref
51. (n.d.). e_1_2_1_39_1

    Type: Other DOI: 10.1007/978--3--540--73279--2_29 Crossref: not found DataCite: not found

    Crossref
52. Nelya Koteyko , Martine van Driel *Autistic author. Learn more… , John Vines (n.d.). Edinburgh Research Explorer.

    Type: Article OpenAlex: https://openalex.org/W4220701058

    OpenAlex
53. Schegloff Emanuel A. (n.d.). On the organization of sequences as a source of "coherence" in talk-in-interaction . On the organization of sequences as a source of "coherence" in talk-in-interaction.

    Type: Other

    Crossref
54. Shope David Nathaniel (1817). Allocentrism and the Moral Significance of Manners. Ph. D. Dissertation . Allocentrism and the Moral Significance of Manners. Ph. D. Dissertation.

    Type: Other

    Crossref
55. Singer Judy (n.d.). Why can't you be normal for once in your life?' From a 'problem with no name' to the emergence of a new category of difference . Why can't you be normal for once in your life?' From a 'problem with no name' to the emergence of a new category of difference.

    Type: Other

    Crossref
56. National Autistic Society. 2021. (2021). What is autism.Retrieved . What is autism.Retrieved.

    Type: Other

    Crossref
57. (n.d.). e_1_2_1_51_1

    Type: Other DOI: 10.1515/text-2018--2021 Crossref: not found DataCite: not found

    Crossref
58. Zappavigna Michele (n.d.). How We Use Language to Create Affiliation on the Web . How We Use Language to Create Affiliation on the Web.

    Type: Other

    Crossref