Skip to main content

Adapting Participatory Design Activities for Autistic Adults: A Review

  • Conference paper
  • First Online:

Part of the book series: Lecture Notes in Computer Science ((LNISA,volume 12780))

Abstract

This paper presents a literature review investigating the suitability of participatory design when conducted with autistic adults. Six relevant papers were discovered, with key information extracted prior to analysis. A thematic analysis revealed six core themes of adaptations and considerations to be made when working with autistic adults: (1) appropriate approaches and methodology, (2) individual differences, (3) flexibility, (4) communication, (5) environment and sensory issues and (6) challenge assumptions. Overall, it was found that participatory design is a suitable method for use with autistic adults, providing careful adjustments are made to some or all of the design activities to ensure their accessibility and effectiveness. It is important that researchers and practitioners have sufficient autism understanding to make these adjustments, and that they invest time to get to know the autistic people involved in their study.

This is a preview of subscription content, log in via an institution.

Buying options

Chapter
USD   29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD   84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD   109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Learn about institutional subscriptions

References

  • Abdullah, M.H.L., Brereton, M.: MyCalendar: supporting children on the autism spectrum to learn language and appropriate behaviour. In: Proceedings of the 29th Australian Conference on Computer-Human Interaction, pp. 201–209 (2017). https://doi.org/10.1145/3152771.3152793

  • Anderson, A., Carter, M., Stephenson, J.: Perspectives of university students with autism spectrum disorder. J. Autism Dev. Disord. 48(3), 651–665 (2018). https://doi.org/10.1007/s10803-017-3257-3

    Article  Google Scholar 

  • Anderson, K.A., Shattuck, P.T., Cooper, B.P., Roux, A.M., Wagner, M.: Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism 18(5), 562 (2014)

    Google Scholar 

  • Anthony, L., Prasad, S., Hurst, A., Kuber, R.: A participatory design workshop on accessible apps and games with students with learning differences. In: Proceedings of the 14th International ACM SIGACCESS Conference on Computers and Accessibility, pp. 253–254 (2012). https://doi.org/10.1145/2384916.2384979

  • APA: Diagnostic and Statistical Manual of Mental Disorders: DSM-IV-TR, 5th edn. American Psychaitric Association (2013)

    Google Scholar 

  • Aresti-Bartolome, N., Garcia-Zapirain, B.: Technologies as support tools for persons with autistic spectrum disorder: a systematic review. Int. J. Environ. Res. Public Health 11(8), 7767–7802 (2014)

    Article  Google Scholar 

  • Aslam, S., van Dijk, J., Dertien, E.: CoCoCo: co-designing a co-design toolkit for co-bots to empower autistic adults. In: 4th RTD Conference: Design United, Issue 4, pp. 1–16 (2019). https://doi.org/10.6084/m9.figshare.7855904.v2

  • Baird, G., et al.: Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet 368(9531), 210–215 (2006)

    Article  Google Scholar 

  • Benton, L., Johnson, H., Brosnan, M., Ashwin, E., Grawemeyer, B.: IDEAS: an interface design experience for the autistic spectrum. In: CHI 2011 Extended Abstracts on Human Factors in Computing Systems, pp. 1759–1764 (2011). https://doi.org/10.1145/1979742.1979841

  • Benton, L., Vasalou, A., Khaled, R., Johnson, H., Gooch, D.: Diversity for design: a framework for involving neurodiverse children in the technology design process. In: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, pp. 3747–3756 (2014). https://doi.org/10.1145/2556288.2557244

  • Bordin, S., De Angeli, A.: Inoculating an agile company with user-centred design: an empirical study. In: Baumeister, H., Lichter, H., Riebisch, M. (eds.) XP 2017. LNBIP, vol. 283, pp. 235–242. Springer, Cham (2017). https://doi.org/10.1007/978-3-319-57633-6_15

    Chapter  Google Scholar 

  • Börjesson, P., Barendregt, W., Eriksson, E., Torgersson, O.: Designing technology for and with developmentally diverse children: a systematic literature review. In: Proceedings of the 14th International Conference on Interaction Design and Children, pp. 79–88 (2015). https://doi.org/10.1145/2771839.2771848

  • Bossavit, B., Parsons, S.: Designing an educational game for and with teenagers with high functioning autism. In: Proceedings of the 14th Participatory Design Conference: Full Papers, vol. 1, pp. 11–20 (2016a). https://doi.org/10.1145/2940299.2940313

  • Bossavit, B., Parsons, S.: “This is how i want to learn”: high functioning autistic teens co-designing a serious game. In: Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, pp. 1294–1299 (2016b). https://doi.org/10.1145/2858036.2858322

  • Cascio, M., Grond, F., Motta Ochoa, R., Tembeck, T., Veen, D., Blain-Moraes, S.: Working together: ethnographic observations on participatory design involving adults with autism. Hum. Organ. 79, 1–12 (2020). https://doi.org/10.17730/0018-7259.79.1.1

  • Chapman, R.: The reality of autism: on the metaphysics of disorder and diversity. Philos. Psychol. 33(6), 799–819 (2020). https://doi.org/10.1080/09515089.2020.1751103

    Article  Google Scholar 

  • Chevalier, P., Martin, J.-C., Isableu, B., Bazile, C., Tapus, A.: Impact of sensory preferences of individuals with autism on the recognition of emotions expressed by two robots, an avatar, and a human. Auton. Robots 41(3), 613–635 (2017)

    Article  Google Scholar 

  • Constantin, A., et al.: Expecting the Unexpected in Participatory Design. Extended Abstracts of the 2019 CHI Conference on Human Factors in Computing Systems, (2019). https://doi.org/10.1145/3290607.3311758

  • Continuum: The Future. Made Real.TM (2019). https://www.continuuminnovation.com/en/

  • Dell’Era, C., Landoni, P.: Living lab: a methodology between user-centred design and participatory design. Creat. Innov. Manage. 23(2), 137–154 (2014). http://10.0.4.87/caim.12061

  • Dillenburger, K., Jordan, J.-A., McKerr, L., Keenan, M.: The Millennium child with autism: Early childhood trajectories for health, education and economic wellbeing. Dev. Neurorehabil. 18(1), 37–46 (2015). https://doi.org/10.3109/17518423.2014.964378

    Article  Google Scholar 

  • Fabri, M., Andrews, P.C.S.: Human-centered design with autistic university students: interface, interaction and information preferences. In: Marcus, A. (ed.) DUXU 2016. LNCS, vol. 9747, pp. 157–166. Springer, Cham (2016). https://doi.org/10.1007/978-3-319-40355-7_15

    Chapter  Google Scholar 

  • Fabri, M., Andrews, P.C.S.S., Pukki, H.K.: Using design thinking to engage autistic students in participatory design of an online toolkit to help with transition into higher education. J. Assistive Technol. 10(2), 102–114 (2016)

    Article  Google Scholar 

  • Fletcher-Watson, S., et al.: Making the future together: shaping autism research through meaningful participation. Autism 23(4), 943–953 (2018). https://doi.org/10.1177/1362361318786721

    Article  Google Scholar 

  • Francis, P., Balbo, S., Firth, L.: Towards co-design with users who have autism spectrum disorders. Univ. Access Inf. Soc. 8(3), 123–135 (2009). https://doi.org/10.1007/s10209-008-0143-y

  • Francis, P., Mellor, D., Firth, L.: Techniques and recommendations for the inclusion of users with autism in the design of assistive technologies. Assistive Technol. 21(2), 57–68 (2009)

    Google Scholar 

  • Frauenberger, C., Good, J., Alcorn, A., Pain, H.: Supporting the design contributions of children with autism spectrum conditions. In: Proceedings of the 11th International Conference on Interaction Design and Children, pp. 134–143 (2012). https://doi.org/10.1145/2307096.2307112

  • Frauenberger, C., Good, J., Keay-Bright, W.: Designing technology for children with special needs: bridging perspectives through participatory design. CoDesign 7(1), 1–28 (2011). https://doi.org/10.1080/15710882.2011.587013

  • Glennon, T.J.: The stress of the university experience for students with Asperger syndrome. Work 17(3), 183–190 (2001)

    Google Scholar 

  • Guldberg, K., Parsons, S., Porayska-Pomsta, K., Keay-Bright, W.: Challenging the knowledge-transfer orthodoxy: knowledge co-construction in technology-enhanced learning for children with autism. Br. Educ. Res. J. 43(2), 394–413 (2017). https://doi.org/10.1002/berj.3275

    Article  Google Scholar 

  • Harrold, N., Tan, C.T., Rosser, D., Leong, T.W.: CopyMe: an emotional development game for children. In: CHI 2014 Extended Abstracts on Human Factors in Computing Systems, pp. 503–506 (2014). https://doi.org/10.1145/2559206.2574785

  • IDEO: IDEO | ideo.com (2019). https://www.ideo.com/eu

  • Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., Pellicano, E.: Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 20(4), 442–462 (2016)

    Article  Google Scholar 

  • Kim, B., et al.: 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 (2020). https://doi.org/10.1371/journal.pone.0237966

  • Kim, S.-I.I., et al.: Toward becoming a better self: understanding self-tracking experiences of adolescents with autism spectrum disorder using custom trackers. In: Proceedings of the 13th EAI International Conference on Pervasive Computing Technologies for Healthcare, pp. 169–178 (2019). https://doi.org/10.1145/3329189.3329209

  • Kojovic, N., Ben Hadid, L., Franchini, M., Schaer, M.: Sensory processing issues and their association with social difficulties in children with autism spectrum disorders. J. Clin. Med. 8(10), 1508 (2019)

    Article  Google Scholar 

  • Lowdermilk, T.: User-centered design: a developer's guide to building user-friendly applications. " O'Reilly Media, Inc." (2013)

    Google Scholar 

  • MacLeod, A.: ‘Welcome to my first rant!’ Report on a participatory pilot project to develop the ‘AS portal’, an online peer support network for higher education students on the autism spectrum. J. Assistive Technol. 4(1), 14–24 (2010). https://doi.org/10.5042/jat.2010.0041

    Article  Google Scholar 

  • McGowan, J., Leplâtre, G., McGregor, I.: CymaSense: a novel audio-visual therapeutic tool for people on the autism spectrum. In: Proceedings of the 19th International ACM SIGACCESS Conference on Computers and Accessibility, pp. 62–71 (2017). https://doi.org/10.1145/3132525.3132539

  • Mohd, C.K.N.C.K., Shahbodin, F., Jano, Z., Azni, A.H.: Visual perception games for autistic learners: design & development. In: Proceedings of the 2019 Asia Pacific Information Technology Conference, pp. 5–11 (2019). https://doi.org/10.1145/3314527.3314533

  • Nicolaidis, C., et al.: The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism 23(8), 2007–2019 (2019). https://doi.org/10.1177/1362361319830523

    Article  Google Scholar 

  • Piven, J., Rabins, P., Group, A. A. W: Autism spectrum disorders in older adults: Toward defining a research agenda. J. Am. Geriatr. Soc. 59(11), 2151–2155 (2011)

    Article  Google Scholar 

  • Plattner, H., Meinel, C., Leifer, L. (eds.): Design thinking research. Springer, Berlin, Germany (2012)

    Google Scholar 

  • Roberston, T., Simonsen, J.: Participatory design: an introduction. In: Routledge International Handbook of Participatory Design, pp. 21–38. Routledge (2012a)

    Google Scholar 

  • Robertson, T., Simonsen, J.: Challenges and opportunities in contemporary participatory design. Des. Issues 28(3), 3–9 (2012b)

    Google Scholar 

  • Rogers, Y., Sharp, H., Preece, J.: Interaction design: beyond human-computer interaction. John Wiley & Sons (2011).

    Google Scholar 

  • Ryu, M., Jo, E., Kim, S.-I.: COSMA: cooperative self-management tool for adolescents with autism. In: Proceedings of the 19th International ACM SIGACCESS Conference on Computers and Accessibility, pp. 409–410 (2017). https://doi.org/10.1145/3132525.3134825

  • Simm, W., Ferrario, et al.: Anxiety and autism: towards personalized digital health. In: Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, pp. 1270–1281 (2016). https://doi.org/10.1145/2858036.2858259

  • VanBergeijk, E., Kiln, A., Volkmar, F.: Supporting more able students on the autism spectrum: college and beyond. J. Autism Dev. Disord. 38(7), 1359–1370 (2008). https://doi.org/10.1007/s10803-007-0524-8

  • Warner, G., Parr, J.R., Cusack, J.: Workshop report: establishing priority research areas to improve the physical health and well-being of autistic adults and older people. Autism in Adulthood 1(1), 20–26 (2019)

    Article  Google Scholar 

  • Weisblatt, E.J., et al.: A tablet computer-assisted motor and language skills training program to promote communication development in children with autism: development and pilot study. International J. Hum. Comput. Interact. 35(8), 643–665 (2019). https://doi.org/10.1080/10447318.2018.1550176

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Marc Fabri .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2021 Springer Nature Switzerland AG

About this paper

Check for updates. Verify currency and authenticity via CrossMark

Cite this paper

Maun, R., Fabri, M., Trevorrow, P. (2021). Adapting Participatory Design Activities for Autistic Adults: A Review. In: Soares, M.M., Rosenzweig, E., Marcus, A. (eds) Design, User Experience, and Usability: Design for Diversity, Well-being, and Social Development. HCII 2021. Lecture Notes in Computer Science(), vol 12780. Springer, Cham. https://doi.org/10.1007/978-3-030-78224-5_21

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-78224-5_21

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-78223-8

  • Online ISBN: 978-3-030-78224-5

  • eBook Packages: Computer ScienceComputer Science (R0)

Publish with us

Policies and ethics