The digital as prosthesis
The role of social media in autistic people's lives
Keywords:
Autism in Brazil, Social Media, Cognitive Prosthesis, Disability StudiesAbstract
Autistic people usually experience difficulties in communication and social interaction and, as social relations are marked by rules that privilege those with mainstream brains, social media play an important role in mediating communication for autistic people. To investigate these processes and observe how digital media can be seen as a cognitive prosthesis, we carried out a digital ethnographic study involving Brazilian online communities about autism and for autistic people, triangulating data via participant observation and online interviews. By doing so, we observed how social media provide a more controllable environment in which autistic people can better communicate and interact with similar others as well as with “neurotypical” people. While for many people digital media may augment interaction and expand the capabilities of the human brain, for autistic people it offers the chance of being part of a society that often excludes them, although it also comes with risks.
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Sutcliffe, A. G., Gonzalez, V., Binder, J., & Nevarez, G. (2011). Social Mediating Technologies: Social Affordances and Functionalities. International Journal of Human–Computer Interaction, 27(11), 1037–1065. https://doi.org/10.1080/10447318.2011.555318
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van der Aa, C., Pollmann, M. M. H., Plaat, A., & van der Gaag, R. J. (2016). Computer-mediated communication in adults with high-functioning autism spectrum disorders and controls. Research in Autism Spectrum Disorders, 23, 15–27. https://doi.org/10.1016/j.rasd.2015.11.007
Whiteman, N. (2012). Undoing Ethics: Rethinking Practice in Online Research. Springer.
Benford, P, & Standen, P. (2009). The internet: A comfortable communication medium for people with Asperger syndrome (AS) and high functioning autism (HFA)? Journal of Assistive Technologies, 3(2), 44–53. https://doi.org/10.1108/17549450200900015
Boellstorff, T. (Ed.). (2012). Ethnography and Virtual Worlds: A Handbook of Method. Princeton University Press.
boyd, danah m., & Ellison, N. B. (2007). Social Network Sites: Definition, History, and Scholarship. Journal of Computer-Mediated Communication, 13(1), 210–230. https://doi.org/10.1111/j.1083-6101.2007.00393.x
Brown, L. (2011, August 4). Autistic Hoya—A blog by Lydia X. Z. Brown: The Significance of Semantics: Person-First Language: Why It Matters. https://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html
Carr, N. G. (2011). The Shallows: What the Internet Is Doing to Our Brains. W.W. Norton.
Chayko, M. (2017). Superconnected: The Internet, Digital Media, and Techno-Social Life. SAGE.
Coeckelbergh, M. (2013). Human Being @ Risk: Enhancement, Technology, and the Evaluation of Vulnerability Transformations. Springer.
Davidson, J. (2008). Autistic Culture Online: Virtual Communication and Cultural Expression on the Spectrum. Social & Cultural Geography, 9(7), 791–806. https://doi.org/10.1080/14649360802382586
Davidson, J., Edwards, S., & Hemsworth, K. (2012). Autism Online—The Role of the Internet in the Daily Lives of People on the Autism Spectrum. Queen’s University.
Dekker, M. (2006, November 11). On Our Own Terms: Emerging Autistic Culture. http://web.archive.org/web/20061111053135/http://trainland.tripod.com/martijn.htm
Floridi, L. (2015). The Onlife Manifesto Being Human in a Hyperconnected Era. Springer.
Fox, J., & Moreland, J. J. (2015). The Dark Side of Social Networking Sites: An Exploration of the Relational and Psychological Stressors Associated with Facebook Use and Affordances. Computers in Human Behavior, 45, 168–176. https://doi.org/10.1016/j.chb.2014.11.083
Funk, T. (2012). The Prosthetic Aesthetic: An Art of Anxious Extensions. Mid-America College Art Association Conference 2012 Digital Publications. https://digitalcommons.wayne.edu/macaa2012scholarship/1
Ganz, J. B. (2015). AAC Interventions for Individuals with Autism Spectrum Disorders: State of the Science and Future Research Directions. Augmentative and Alternative Communication, 31(3), 203–214. https://doi.org/10.3109/07434618.2015.1047532
Hair, N., & Clark, M. (2007). The Ethical Dilemmas and Challenges of Ethnographic Research in Electronic Communitieis. International Journal of Market Research, 49(6), 781–800. https://doi.org/10.1177/147078530704900609
Haraway, D. (2000). A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century. In D. Bell & B. M. Kennedy (Eds.), The Cybercultures Reader (pp. 149–181). Routledge.
Hayles, K. (1999). How We Became Posthuman: Virtual Bodies in Cybernetics, Literature, and Informatics. University of Chicago Press.
Hayles, K. (2012). How We Think Digital Media and Contemporary Technogenesis. The University of Chicago Press.
Hine, C. (2000). Virtual Ethnography. SAGE.
Kozinets, R. V. (2010). Netnography: Ethnographic Research in the Age of the Internet (1st ed). Sage Publications Ltd.
Levy, P. (2004). As Tecnologias Da Inteligência: O Futuro Do Pensamento Na Era Da Informática. Editora 34.
Liu, L. H. (2010). The Freudian Robot: Digital Media and the Future of the Unconscious. University of Chicago Press.
McLuhan, M. (2010). Understanding Media: The Extensions of Man (Repr). Routledge.
Mohd Roffeei, S. H., Abdullah, N., & Basar, S. K. R. (2015). Seeking social support on Facebook for children with Autism Spectrum Disorders (ASDs). International Journal of Medical Informatics, 84(5), 375–385. https://doi.org/10.1016/j.ijmedinf.2015.01.015
Moraes, Í. A. P., Massetti, T., Crocetta, T. B., da Silva, T. D., de Menezes, L. D. C., Monteiro, C. B. de M., & Magalhães, F. H. (2017). Motor Learning Characterization in People with Autism Spectrum Disorder: A Systematic Review. Dementia & Neuropsychologia, 11(3), 276–286. https://doi.org/10.1590/1980-57642016dn11-030010
Murphy, C. M., Wilson, C. E., Robertson, D. M., Ecker, C., Daly, E. M., Hammond, N., Galanopoulos, A., Dud, I., Murphy, D. G., & McAlonan, G. M. (2016). Autism Spectrum Disorder in Adults: Diagnosis, Management, and Health Services Development. Neuropsychiatric Disease and Treatment, 12, 1669–1686. https://doi.org/10.2147/NDT.S65455
Nelson, A. (2004). Declaration From the Autism Community That They are a Minority Group. PRWeb. http://www.prweb.com/releases/2004/11/prweb179444.htm
Newton, A. T., Kramer, A. D. I., & McIntosh, D. N. (2009). Autism Online: A Comparison of Word Usage in Bloggers with and Without Autism Spectrum Disorders. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, 463–466. https://doi.org/10.1145/1518701.1518775
Ortega, F. (2009). The Cerebral Subject and the Challenge of Neurodiversity. BioSocieties, 4(4), 425–445. https://doi.org/10.1017/S1745855209990287
Papacharissi, Z. (2009). The Virtual Geographies of Social Networks: A Comparative Analysis of Facebook, Linkedin and Asmallworld. New Media & Society, 11(1–2), 199–220. https://doi.org/10.1177/1461444808099577
Robertson, S. M. (2009). Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges. Disability Studies Quarterly, 30(1). http://dsq-sds.org/article/view/1069
Romano, M., Truzoli, R., Osborne, L. A., & Reed, P. (2014). The Relationship Between Autism Quotient, Anxiety, and Internet Addiction. Research in Autism Spectrum Disorders, 8(11), 1521–1526. https://doi.org/10.1016/j.rasd.2014.08.002
Silberman, S. (2015). Neurotribes: The Legacy of Autism and the Future of Neurodiversity. Avery, a member of Penguin Group USA.
Singer, J. (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 M. Corker & S. French (Eds.), Disability discourse (pp. 59–67). Open University Press.
Stein-Sparvieri, E. (2012). Creencias Y Actitudes En Torno Al Problema De La Discapacidad En Distintos Países De América Y Europa. Subjetividad y Procesos Cognitivos, 16(1), 218–244. http://dspace.uces.edu.ar:8180/xmlui/handle/123456789/1826
Sutcliffe, A. G., Gonzalez, V., Binder, J., & Nevarez, G. (2011). Social Mediating Technologies: Social Affordances and Functionalities. International Journal of Human–Computer Interaction, 27(11), 1037–1065. https://doi.org/10.1080/10447318.2011.555318
Thompson, R. (2016, March 7). Keyboarding or Handwriting. Speech & OT. https://www.speechandot.com/keyboarding-or-handwriting/
Tufekci, Z. (2013). We Were Always Human. In N. L. Whitehead & M. Wesch (Eds.), Human No More: Digital Subjectivities, Unhuman Subjects, and the End of Anthropology (pp. 33–47). University Press of Colorado.
van der Aa, C., Pollmann, M. M. H., Plaat, A., & van der Gaag, R. J. (2016). Computer-mediated communication in adults with high-functioning autism spectrum disorders and controls. Research in Autism Spectrum Disorders, 23, 15–27. https://doi.org/10.1016/j.rasd.2015.11.007
Whiteman, N. (2012). Undoing Ethics: Rethinking Practice in Online Research. Springer.
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