"My Perfect Platform Would Be Telepathy" - Reimagining the Design of Social Media with Autistic Adults

Pena, B. B., Koteyko, N., van Driel, M., Delgado, A., & Vines, J. (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. https://doi.org/10.1145/3544548.3580673

Publication date: 19 Apr 2023 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
5
Publication authors identified as autistic
1 / 5 (20.0%)

Abstract

In this paper, we critically examine the design of mainstream social media platforms from the point of view of autistic experiences and perspectives, drawing inspiration from the neurodiversity movement, the notion of autism as neurodivergence, and the concept of autistic sociality. We conducted 12 participatory design sessions with 20 autistic adult collaborators. Through thematic analysis of qualitative data, we identify seven challenges our participants experienced when using social media, and a set of imagined features that represent their vision of how design could better support their social media use. We discuss how mainstream social media platforms are primarily designed to address neurotypical sensitivities, and fail autistic adults through lack of user control, inadequate mechanisms for expressing tone and intention, and an orientation towards phatic interactions. To close, we outline how autistic sociality can inspire the design of kinder and more considerate social media platforms.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
59
Total cited references integrated for this publication.
Cited references with an identified autistic author
10 / 59 (16.9%)
Cited author occurrences identified as autistic
10 / 189 (5.3%)
Among occurrences linked to AutiHub author records: 10 / 56 (17.9%). Distinct cited authors identified as autistic: 6 / 167 (3.6%).
Cited author occurrences linked to AutiHub author records
56 / 189 (29.6%)
Distinct linked cited authors: 45 / 167 (26.9%)
Linked cited-author occurrences not identified as autistic
46 / 56 (82.1%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 46 / 189 (24.3%). Distinct linked cited authors not identified as autistic: 39 / 45 (86.7%).
1 cited bibliography entry could not be fully enriched from DOI metadata.
Crossref: not found (1)
  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.
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  2. RTD Conference , Suhaib Aslam , Jelle Van Dijk , Edwin Dertien (2019). CoCoCo: Co-Designing a Co-design toolkit for Co-bots to empower autistic adults . Figshare. figshare.
    Type: Article DOI: 10.6084/m9.figshare.7855904.v1 OpenAlex: https://openalex.org/W6958372903 Crossref: not found
    Crossref OpenAlex OpenCitations
  3. Rachael Maun , Marc Fabri , Pip Trevorrow (2021). Adapting Participatory Design Activities for Autistic Adults: A Review . Lecture Notes in Computer Science, 300-314. Springer International Publishing.
    Crossref OpenAlex OpenCitations
  4. Pier Jaarsma , Stellan Welin (2012). Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement . Health Care Analysis, 20(1), 20-30. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  5. (2022). n.d. What is autism?Retrieved . n.d. What is autism?Retrieved.
    Type: Other
    Crossref
  6. Deborah M. Ward , Karen E. Dill-Shackleford , Micah Mazurek (2018). Social Media Use and Happiness in Adults with Autism Spectrum Disorder . Cyberpsychology, Behavior, and Social Networking, 21(3), 205-209. SAGE Publications.
    Crossref OpenAlex OpenCitations
  7. 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.
    Crossref OpenAlex OpenCitations
  8. Christopher Barber (2017). Social media and autism spectrum conditions . Practice Nursing, 28(7), 292-298. Mark Allen Group.
    Crossref OpenAlex OpenCitations
  9. Ulrik Lyngs , Kai Lukoff , Petr Slovak , William Seymour , Helena Webb , Marina Jirotka et al. (2020). 'I Just Want to Hack Myself to Not Get Distracted' . Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems, 1-15. ACM.
    Crossref OpenAlex OpenCitations
  10. Micah Mazurek (2013). Social media use among adults with autism spectrum disorders . Computers in Human Behavior, 29(4), 1709-1714. Elsevier BV.
    Crossref OpenAlex OpenCitations
  11. Ben Belek (2018). Autism and the Proficiency of Social Ineptitude: Probing the Rules of “Appropriate” Behavior . Ethos, 46(2), 161-179. Wiley.
    Crossref OpenAlex OpenCitations
  12. Hanna Bertilsdotter Rosqvist *Autistic author. Learn more… (2019). Doing things together . Alter, 13-3, 168-178. OpenEdition.
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  13. Hanne De Jaegher (2013). Embodiment and sense-making in autism . Frontiers in Integrative Neuroscience, 7, 15. Frontiers Media SA.
    Crossref OpenAlex OpenCitations
  14. Bogoan Kim , Daehyoung Lee , Aehong Min , Seungwon Paik , Georgia Frey , Scott Bellini et al. (2020). PuzzleWalk: A theory-driven iterative design inquiry of a mobile game for promoting physical activity in adults with autism spectrum disorder . PLOS ONE, 15(9), e0237966. Public Library of Science (PLoS).
    Crossref OpenAlex OpenCitations
  15. Will Simm , Maria Angela Ferrario , Adrian Gradinar , Jon Whittle (2014). Prototyping 'clasp' . Proceedings of the 2014 conference on Designing interactive systems, 345-354. ACM.
    Crossref OpenAlex OpenCitations
  16. Nomy Bitman (2022). “Authentic” digital inclusion? Dis/ability performances on social media by users with concealable communicative disabilities . New Media & Society, 24(2), 401-419. SAGE Publications.
    Crossref OpenAlex OpenCitations
  17. Elinor Ochs , Olga Solomon (2010). Autistic Sociality . Ethos, 38(1), 69-92. Wiley.
    Crossref OpenAlex OpenCitations
  18. John Vines , Mark Blythe , Stephen Lindsay , Paul Dunphy , Andrew Monk , Patrick Olivier (2012). Questionable concepts . Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, 1169-1178. ACM.
    Crossref OpenAlex OpenCitations
  19. Janet Borgerson , Daniel Miller (2016). Scalable sociality and “How the world changed social media”: conversation with Daniel Miller . Consumption Markets & Culture, 19(6), 520-533. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  20. Xinru Page , Andrew Capener , Spring Cullen , Tao Wang , Monica Garfield , Pamela J. Wisniewski (2022). Perceiving Affordances Differently: The Unintended Consequences When Young Autistic Adults Engage with Social Media . CHI Conference on Human Factors in Computing Systems, 1-21. ACM.
    Crossref OpenAlex OpenCitations
  21. Vincent Miller (2008). New Media, Networking and Phatic Culture . Convergence: The International Journal of Research into New Media Technologies, 14(4), 387-400. SAGE Publications.
    Crossref OpenAlex OpenCitations
  22. Miriam Madsen , Rana el Kaliouby , Micah Eckhardt , Mohammed E. Hoque , Matthew S. Goodwin , Rosalind Picard (2009). Lessons from participatory design with adolescents on the autism spectrum . CHI '09 Extended Abstracts on Human Factors in Computing Systems, 3835-3840. ACM.
    Crossref OpenAlex OpenCitations
  23. Virginia Braun , Victoria Clarke (2019). Reflecting on reflexive thematic analysis . Qualitative Research in Sport, Exercise and Health, 11(4), 589-597. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  24. Kim Halskov , Peter Dalsgård (2006). Inspiration card workshops . Proceedings of the 6th conference on Designing Interactive systems, 2-11. ACM.
    Crossref OpenAlex OpenCitations
  25. Joyce Davidson (2008). Autistic culture online: virtual communication and cultural expression on the spectrum . Social & Cultural Geography, 9(7), 791-806. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  26. Virginia Braun , Victoria Clarke (2021). Can I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern‐based qualitative analytic approaches . Counselling and Psychotherapy Research, 21(1), 37-47. Wiley.
    Crossref OpenAlex OpenCitations
  27. Ulrik Lyngs , Kai Lukoff , Petr Slovak , Reuben Binns , Adam Slack , Michael Inzlicht et al. (2019). Self-Control in Cyberspace . Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems, 1-18. ACM.
    Crossref OpenAlex OpenCitations
  28. Virginia Braun , Victoria Clarke (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328-352. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  29. Melissa Brough , Ioana Literat , Amanda Ikin (2020). “Good Social Media?”: Underrepresented Youth Perspectives on the Ethical and Equitable Design of Social Media Platforms . Social Media + Society, 6(2). SAGE Publications.
    Crossref OpenAlex OpenCitations
  30. Nicholas Sheep Dalton (2013). Neurodiversity & HCI . CHI '13 Extended Abstracts on Human Factors in Computing Systems, 2295-2304. ACM.
    Crossref OpenAlex OpenCitations
  31. Katie Gaudion , Ashley Hall , Jeremy Myerson , Elizabeth Pellicano (2015). A designer's approach: how can autistic adults with learning disabilities be involved in the design process? CoDesign, 11(1), 49-69. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  32. Alexander Cho (2018). Default publicness: Queer youth of color, social media, and being outed by the machine . New Media & Society, 20(9), 3183-3200. SAGE Publications.
    Crossref OpenAlex OpenCitations
  33. Florian Grond , M. Ariel Cascio , Rossio Motta-Ochoa , Tamar Tembeck , Dan Ten Veen , Stefanie Blain-Moraes (2019). Participatory design of biomusic with users on the autism spectrum . 2019 8th International Conference on Affective Computing and Intelligent Interaction (ACII), 1-7. IEEE.
    Crossref OpenAlex OpenCitations
  34. Jinan Zeidan , Éric Fombonne , Julie Scorah , Alaa T. Ibrahim , Maureen S. Durkin , Shekhar Saxena et al. (2022). Global prevalence of autism: A systematic review update . Autism Research, 15(5), 778-790. Wiley.
    Type: Article DOI: 10.1002/aur.2696 OpenAlex: https://openalex.org/W4214849391
    Crossref OpenAlex OpenCitations
  35. Sarah Parsons , Nicola Yuill , Judith Good , Mark Brosnan , Lisa Austin , Clarence Singleton et al. (2016). What Technology for Autism Needs to be Invented? Idea Generation from the Autism Community via the ASCmeI.T. App . In Lecture Notes in Computer Science (pp. 343-350). Springer International Publishing.
    Crossref OpenAlex OpenCitations
  36. Andrés Lucero , Peter Dalsgaard , Kim Halskov , Jacob Buur (2016). Designing with Cards . In Collaboration in Creative Design (pp. 75-95). Springer International Publishing.
    Crossref OpenAlex OpenCitations
  37. Linguistics Department, University of the Western Cape , Felix Banda (2015). Review of Semiotic Landscapes: Language, Image, Space by Adam Jaworski and Crispin Thurlow . Multilingual Margins: A journal of multilingualism from the periphery, 2(1). University of the Western Cape Library Service.
    Crossref OpenAlex OpenCitations
  38. Drew Cat (2016). Retrieved . Retrieved.
    Type: Other
    Crossref
  39. National Institute for Health , Care Research (NIHR). 2018. (2022). Reward and recognition for public contributors - a guide to the payment of fees and expenses. Retrieved . Reward and recognition for public contributors - a guide to the payment of fees and expenses. Retrieved.
    Type: Other
    Crossref
  40. Brett Heasman , Alex Gillespie (2019). Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding . Autism, 23(4), 910-921. SAGE Publications.
    Crossref OpenAlex OpenCitations
  41. Good Judith (2016). App. In Autism and Technology: Beyond Assistance & Interventions - A workshop at #CHI2016 . App. In Autism and Technology: Beyond Assistance & Interventions - A workshop at #CHI2016.
    Type: Other
    Crossref
  42. Amon Rapp , Federica Cena , Claudio Mattutino , Guido Boella , Claudio Schifanella , Roberto Keller et al. (2019). Designing an Urban Support for Autism . Proceedings of the 21st International Conference on Human-Computer Interaction with Mobile Devices and Services, 1-6. ACM.
    Crossref OpenAlex OpenCitations
  43. Emma Kinnaird , Catherine Stewart , Kate Tchanturia (2019). Investigating alexithymia in autism: A systematic review and meta-analysis . European Psychiatry, 55, 80-89. Cambridge University Press (CUP).
    Crossref OpenAlex OpenCitations
  44. Deborah Sturm , Michael Kholodovsky , Rayan Arab , David Shane Smith , Pavel Asanov , Kristen Gillespie-Lynch (2019). Participatory Design of a Hybrid Kinect Game to Promote Collaboration between Autistic Players and Their Peers . International Journal of Human–Computer Interaction, 35(8), 706-723. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  45. Paraskevi Triantafyllopoulou , Charlotte Clark-Hughes , Peter E. Langdon (2022). Social Media and Cyber-Bullying in Autistic Adults . Journal of Autism and Developmental Disorders, 52(11), 4966-4974. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  46. 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
  47. Annuska Zolyomi , Jaime Snyder (2021). Social-Emotional-Sensory Design Map for Affective Computing Informed by Neurodivergent Experiences . Proceedings of the ACM on Human-Computer Interaction, 5(CSCW1), 1-37. Association for Computing Machinery (ACM).
    Type: Article DOI: 10.1145/3449151 OpenAlex: https://openalex.org/W3159203425
    Crossref OpenAlex OpenCitations
  48. Tao Wang , Monica Garfield , Pamela Wisniewski , Xinru Page (2020). Benefits and Challenges for Social Media Users on the Autism Spectrum . Companion Publication of the 2020 Conference on Computer Supported Cooperative Work and Social Computing, 419-424. ACM.
    Crossref OpenAlex OpenCitations
  49. Nelya Koteyko , Martine van Driel *Autistic author. Learn more… , John Vines (n.d.). Edinburgh Research Explorer.
    Type: Article OpenAlex: https://openalex.org/W4220701058
    OpenAlex
  50. Singer Judy (n.d.). From a ’problem with no name . From a ’problem with no name.
    Type: Other
    Crossref
  51. (n.d.). Judy Singer. 2017. NeuroDiversity: The Birth of an Idea. Judy Singer.
    Type: Other
    Crossref
  52. Spaa Anne Fleur (n.d.). Understanding the role of design in supporting reflective practice in evidence-based policymaking. Ph . Understanding the role of design in supporting reflective practice in evidence-based policymaking. Ph.
    Type: Other
    Crossref