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View all- Koteyko NVan Driel MBillan SBarros Pena BVines J(2024)Stigma Management Strategies of Autistic Social Media UsersAutism in Adulthood10.1089/aut.2023.0095Online publication date: 9-Apr-2024
Understanding Autistic Adults' Use of Social Media
Article No.: 257, Pages 1 - 23
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.
References
[1]
Jannis Androutsopoulos. 2008. Potentials and Limitations of Discourse-Centred Online Ethnography. Language@Internet 5, 8 (2008). http://nbn-resolving.de/urn:nbn:de:0009--7--16100
[2]
Jannis Androutsopoulos. 2014. Moments of sharing: Entextualization and linguistic repertoires in social networking. Journal of Pragmatics 73 (2014), 4 https://doi.org/10.1016/j.pragma.2014.07.013
[3]
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.
[4]
Nancy Bagatell. 2007. Orchestrating voices: autism, identity and the power of discourse. Disability & Society 22, 4 (2007), 413--426. https://doi.org/10.1080/09687590701337967
[5]
Christopher Barber. 2017. Social media and autism spectrum conditions. Practice Nursing 28, 7 (2017), 292--298. https://doi.org/10.12968/pnur.2017.28.7.292
[6]
Simon Baron-Cohen. 2001. Theory of Mind in normal development and autism. Prisme 34 (2001), 174--183.
[7]
Belen Barros Pena, Nelya Koteyko, Martine Van Driel, Andrea Delgado, and John Vines. 2023. "My Perfect Platform Would Be Telepathy" - Reimagining the Design of Social Media with Autistic Adults. In Proceedings of the 2023 CHI Conference on Human Factors in Computing Systems (Hamburg, Germany) (CHI '23). ACM New York, NY, USA, Hamburg, Germany. https://doi.org/10.1145/3544548.3580673
[8]
Caroline Bell, Cara Fausset, Sarah Farmer, Julie Nguyen, Linda Harley, and W. Bradley Fain. 2023. Examining social media use among older adults. In Proceedings of the 24th ACM Conference on Hypertext and Social Media (HT '13). ACM New York, NY, USA, 158--163. https://doi.org/10.1145/2481492.2481509
[9]
Matteo Bianchin and Ann Heylighen. 2018. Just design. Design Studies 54 (2018). https://doi.org/10.1016/j.destud. 2017.10.001
[10]
Kristen Bottema-Beutel, Steven K. Kapp, Jessica Nina Lester, Noah J. Sasson, and Brittany N. Hand. 2021. Avoiding Ableist Language: Suggestions for Autism Researchers. Autism in Adulthood 3, 1 (2021), 18--29. https://doi.org/10. 1089/aut.2020.0014
[11]
LouAnne E. Boyd, Alejandro Rangel, Helen Tomimbang, Andrea Conejo-Toledo, Kanika Patel, Monica Tentori, and Gillian R. Hayes. 2016. SayWAT: Augmenting Face-to-Face Conversations for Adults with Autism. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (San Jose, California, USA) (CHI '16). Association for Computing Machinery, New York, NY, USA, 4872--488https://doi.org/10.1145/2858036.2858215
[12]
Virginia Braun and Victoria Clarke. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology 3, 2 (2006), 77--101. https://doi.org/10.1191/1478088706qp063oa
[13]
Charlotte Brownlow, Hanna Bertilsdotter Rosqvist, and 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 (2015), 188--193. https://doi.org/10.1080/15017419.2013.859174
[14]
Eleanor R. Burgess, Kathryn E. Ringland, Jennifer Nicholas, Ashley A. Knapp, Jordan Eschler, David C. Mohr, and Madhu C. Reddy. 2019. "I Think People Are Powerful": The Sociality of Individuals Managing Depression. Proc. ACM Hum.-Comput. Interact. 3, CSCW, Article 41 (nov 2019), 29 pages. https://doi.org/10.1145/3359143
[15]
Moira Burke, Robert Kraut, and Diane Williams. 2010. Social Use of Computer-Mediated Communication by Adults on the Autism Spectrum. In Proceedings of the 2010 ACM Conference on Computer Supported Cooperative Work (Savannah, Georgia, USA) (CSCW '10). Association for Computing Machinery, New York, NY, USA, 425--4https://doi.org/10. 1145/1718918.1718991
[16]
Julia Cook, Laura Crane, Laura Bourne, Laura Hull, and William Mandy. 2021. Camouflaging in an everyday social context: An interpersonal recall study. Autism 25, 5 (2021), 1444--1456. https://doi.org/10.1177/1362361321992641
[17]
Rafael F. Cordeiro, Williby S. Ferreira, Yuska P. C. Aguiar, Juliana A. G. Saraiva, Carole Tardif, and Edith Galy. 2018. The Brazilian Challenge to Accessibility and Digital Inclusion for People With Autistic Spectrum Disorders. In Proceedings of the 17th Brazilian Symposium on Human Factors in Computing Systems (Belém, Brazil) (IHC 2018). Association for Computing Machinery, New York, NY, USA, Article 37, 9 pages.https://doi.org/10.1145/3274192.3274229
[18]
Catherine J Crompton, Sonny Hallett, Danielle Ropar, Emma Flynn, and 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 (2020), 1438--1448. https://doi.org/10.1177/1362361320908976
[19]
Nicole B Ellison and danah boyd. 2013. Sociality through social network sites. In The Oxford Handbook of Internet Studies, William H. Dutton (Ed.). Oxford University Press, Oxford, 151--172. https://doi.org/10.1093/oxfordhb/9780199589074. 013.0008
[20]
Nicole B. Ellison and Jessica Vitak. 2015. Social network site affordances and their relationship to social capital processes. In The Handbook of the Psychology of Communication Technology, S. Shyam Sundar (Ed.). John Wiley & Sons, Ltd, Chapter 9, 203--227. https://doi.org/10.1002/9781118426456.ch9
[21]
Sue Fletcher-Watson, Jon Adams, Kabie Brook, Tony Charman, Laura Crane, James Cusack, Susan Leekam, Damian Milton, Jeremy R Parr, and Elizabeth Pellicano. 2019. Making the future together: Shaping autism research through meaningful participation. Autism 23, 4 (2019), 943--953. https://doi.org/10.1177/1362361318786721
[22]
Elliot Fox, Shane Baden, Justin Greene, Nick Ziegler, and Moushumi Sharmin. 2019. Connection: Assisting Neurodiverse Individuals in Forming Lasting Relationships Through a Digital Medium. In Proceedings of the 21st International ACM SIGACCESS Conference on Computers and Accessibility (Pittsburgh, PA, USA) (ASSETS '19). Association for Computing Machinery, New York, NY, USA, 633--635. https://doi.org/10.1145/3308561.3354641
[23]
Shaun Gallagher. 2004. Understanding interpersonal problems in autism: Interaction theory as an alternative to theory of mind. Philosophy, Psychiatry, & Psychology 11, 3 (2004), 199--217. https://doi.org/10.1353/ppp.2004.0063
[24]
Alexandra Georgakopoulou. 2016. ?Friendly'comments: Interactional displays of alignment on Facebook and YouTube. In Social Media Discourse, (Dis)identifications and Diversities, Elina Westinen Sirpa Leppanen and Samu Kytola (Eds.). Routledge, New York, 189--2https://doi.org/10.4324/9781315624822
[25]
Kristen Gillespie-Lynch, Steven K. Kapp, Christina Shane-Simpson, David Shane Smith, and Ted Hutman. 2014. Intersections Between the Autism Spectrum and the Internet: Perceived Benefits and Preferred Functions of ComputerMediated Communication. Intellectual and Developmental Disabilities 52, 6 (12 2014), 456--469. https://doi.org/10. 1352/1934--9556--52.6.456
[26]
Brett Heasman and Alex Gillespie. 2019. Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding. Autism 23, 4 (2019), 910--921. https://doi.org/10.1177/1362361318785172
[27]
Cara Ryan Idriss. 2021. Invisible Autistic Infrastructure: Ethnographic Reflections on an Autistic Community. Medical Anthropology 40, 2 (2021), 129--140. https://doi.org/10.1080/01459740.2020.1849185
[28]
Alicja Jedrzejewska and 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 (2022), 630--646. https://doi.org/10.1007/ s10803-021-04953--6
[29]
P. John Clarkson and Roger Coleman. 2015. History of Inclusive Design in the UK. Applied Ergonomics 46 (2015), 235--247. https://doi.org/10.1016/j.apergo.2013.03.002
[30]
Luka Kille-Speckter and Farnaz Nickpour. 2022. The evolution of inclusive design: A first timeline review of narratives and milestones of design for disability. In DRS Biennial Conference Series. Bilbao. https://doi.org/10.21606/drs.2022.690
[31]
Nelya Koteyko, Martine van Driel, and John Vines. 2022. Autistic sociality on Twitter: Enacted affordances and affiliation strategies. Discourse & Communication 16, 4 (2022), 385--402. https://doi.org/10.1177/17504813211070655
[32]
Micah O. Mazurek. 2013. Social media use among adults with autism spectrum disorders. Computers in Human Behavior 29, 4 (2013), 1709--1714. https://doi.org/10.1016/j.chb.2013.02.004
[33]
Danielle Miller, Jon Rees, and Amy Pearson. 2021. "Masking Is Life": Experiences of Masking in Autistic and Nonautistic Adults. Autism in Adulthood 3, 4 (2021), 330--338. https://doi.org/10.1089/aut.2020.0083
[34]
Damian E.M. Milton. 2012. On the ontological status of autism: the ?double empathy problem'. Disability & Society 27, 6 (2012), 883--887. https://doi.org/10.1080/09687599.2012.710008
[35]
Clodagh M Murphy, C Ellie Wilson, Dene M Robertson, Christine Ecker, Eileen M Daly, Neil Hammond, Anastasios Galanopoulos, Iulia Dud, Declan G Murphy, and Grainne M McAlonan. 2016. Autism spectrum disorder in adults: diagnosis, management, and health services development. Neuropsychiatric Disease and Treatment 12 (2016), 1669--1686. https://doi.org/10.2147/NDT.S65455
[36]
Elinor Ochs and Olga Solomon. 2004. Introduction: Discourse and Autism. Discourse Studies 6, 2 (2004), 139--146. https://doi.org/10.1177/1461445604041763
[37]
Michelle O'Reilly, Jessica Nina Lester, and Tom Muskett. 2016. Discourse/Conversation Analysis and Autism Spectrum Disorder. Journal of Autism and Developmental Disorders 46, 2 (2016), 355--359. https://doi.org/10.1007/s10803-0152665--5
[38]
Xinru Page, Andrew Capener, Spring Cullen, Tao Wang, Monica Garfield, and Pamela J. Wisniewski. 2022. Perceiving Affordances Differently: The Unintended Consequences When Young Autistic Adults Engage with Social Media. In Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems (New Orleans, LA, USA) (CHI '22). Association for Computing Machinery, New York, NY, USA, Article 144, 21 pages.https://doi.org/10.1145/3491102. 3517596
[39]
Graham Pullin and Alan Newell. 2007. Focussing on Extra-Ordinary Users. In Universal Acess in Human Computer Interaction. Coping with Diversity (Lecture Notes in Computer Science), Constantine Stephanidis (Ed.). Springer, Berlin, Heidelberg, 253--262. https://doi.org/10.1007/978--3--540--73279--2_29
[40]
Amon Rapp, Federica Cena, Romina Castaldo, Roberto Keller, and Maurizio Tirassa. 2018. Designing technology for spatial needs: Routines, control and social competences of people with autism. International Journal of Human-Computer Studies 120 (2018), 49--65. https://doi.org/10.1016/j.ijhcs.2018.07.005
[41]
Kathryn E. Ringland, Christine T. Wolf, Heather Faucett, Lynn Dombrowski, and Gillian R. Hayes. 2016. "Will I Always Be Not Social?": Re-Conceptualizing Sociality in the Context of a Minecraft Community for Autism. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (San Jose, California, USA) (CHI '16). Association for Computing Machinery, New York, NY, USA, 1256--126https://doi.org/10.1145/2858036.2858038
[42]
Emanuel A. Schegloff. 1987. Analyzing Single Episodes of Interaction: An Exercise in Conversation Analysis. Social Psychology Quarterly 50, 2 (1987), 101--1https://doi.org/10.2307/2786745
[43]
Emanuel A. Schegloff. 1990. On the organization of sequences as a source of "coherence" in talk-in-interaction. In Conversational Organization and its Development, Bruce Dorval (Ed.). Ablex, Norwood, NJ, 51--77.
[44]
David Nathaniel Shope. 2021. Autism, Allocentrism and the Moral Significance of Manners. Ph. D. Dissertation. University of California, Riverside. https://www.proquest.com/docview/2597518171 Order No. 28717750.
[45]
Will Simm, Maria Angela Ferrario, Adrian Gradinar, Marcia Tavares Smith, Stephen Forshaw, Ian Smith, and Jon Whittle. 2016. Anxiety and Autism: Towards Personalized Digital Health (CHI '16). Association for Computing Machinery, New York, NY, USA, 1270--1281. https://doi.org/10.1145/2858036.2858259
[46]
Will Simm, Maria Angela Ferrario, Adrian Gradinar, and Jon Whittle. 2014. Prototyping 'clasp': implications for designing digital technology for and with adults with autism. In Proceedings of the 2014 conference on Designing interactive systems (DIS '14). Association for Computing Machinery, New York, NY, USA, 345--354. https://doi.org/10. 1145/2598510.2600880
[47]
Judy Singer. 1999. '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. In Disability Discourse, Mairian Corker and Sally French (Eds.). Open University Press, Buckingham - Philadelphia, 57--67.
[48]
National Autistic Society. 2021. What is autism.Retrieved January 27, 2021 from https://www.autism.org.uk/adviceand-guidance/what-is-autism
[49]
Olga Solomon. 2004. Narrative introductions: discourse competence of children with autistic spectrum disorders. Discourse Studies 6, 2 (2004), 253--276. https://doi.org/10.1177/1461445604041770
[50]
Katta Spiel, Christopher Frauenberger, Os Keyes, and Geraldine Fitzpatrick. 2019. Agency of Autistic Children in Technology Research-A Critical Literature Review. ACM Transactions on Computer-Human Interaction 26, 6 (2019). https://doi.org/10.1145/3344919
[51]
Peter Wikstrom. 2019. Acting out on Twitter: Affordances for animating reported speech in written computer-mediated communication. Text & Talk 39, 1 (2019), 121--145. https://doi.org/10.1515/text-2018--2021
[52]
Michele Zappavigna. 2011. Ambient affiliation: A linguistic perspective on Twitter. New Media & Society 13, 5 (2011), 788--806. https://doi.org/10.1177/1461444810385097
[53]
Michele Zappavigna. 2012. Discourse of Twitter and Social Media, How We Use Language to Create Affiliation on the Web. Bloomsbury Publishing.
[54]
Michele Zappavigna and J.R. Martin. 2018. #Communing affiliation: Social tagging as a resource for aligning around values in social media. Discourse, Context & Media 22 (2018), 4--12. https://doi.org/10.1016/j.dcm.2017.08.001 Discourse of Social Tagging.
[55]
Annuska Zolyomi, Andrew Begel, Jennifer Frances Waldern, John Tang, Michael Barnett, Edward Cutrell, Daniel McDuff, Sean Andrist, and Meredith Ringel Morris. 2019. Managing Stress: The Needs of Autistic Adults in Video Calling. Proc. ACM Hum.-Comput. Interact. 3, CSCW, Article 134 (nov 2019), 29 pages. https://doi.org/10.1145/3359236
[56]
Annuska Zolyomi, Ridley Jones, and Tomer Kaftan. 2020. #ActuallyAutistic Sense-Making on Twitter. In Proceedings of the 22nd International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '20). Association for Computing Machinery, New York, NY, USA.https://doi.org/10.1145/3373625.3418001
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View all- Koteyko NVan Driel MBillan SBarros Pena BVines J(2024)Stigma Management Strategies of Autistic Social Media UsersAutism in Adulthood10.1089/aut.2023.0095Online publication date: 9-Apr-2024
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