Autism has become a popular word. In Brazil, it is estimated that there are around 2 hundred thousand autistic people (Apae Brasil, 2017). Autistic people, as well as their supporters, have been using social media, despite the drawbacks, to communicate with each other and create social capital. Although there is a limited amount of research talking about autism and social media, either focusing on support or autistic usage of digital tools, Brazil is still barely represented in these studies and it is also underrepresented in research about disability in general (Meekosha, 2011). Hence, understanding the challenges and drawbacks that social media brings to the autism community in Brazil can induce better ways to approach it and take the best out of it.
This dissertation presents the results of a digital ethnographic study, based on participant observation, carried out in three Brazilian Facebook groups: ‘Sou Autista… conheça o meu mundo’, ‘Lagarta vira Pupa’, and ‘Grupo Asperger – Brasil’. By the end of this empirical study, it was possible to observe some key aspects related to the communities which are discussed in the four papers in Part 2; the first paper, ‘We are people and so are they: Shared intimacies and the ethics of digital ethnography in autism communities’, deals with the ethical aspects faced while conducting the research. It first explores the fact I, the conductor of data collection, decided to present myself as a supporter of the cause, not as a researcher only, as I was already a member of the communities and do not believe disability research can be done without personal participation; then it reflects on how to deal with the identity of participants, as I gave them the choice of being named or not, since I believed their choices matter; and finally it discusses the cases in which anonymity was necessary as participants would not be fully aware of publishing’s consequences. The second paper ‘Autism and social media: The case of Brazil’, provides an overview of all the communities studied, leading to the conclusion that Facebook affords the participation of people with different levels of instruction or challenges, even though autistic people who face more severe challenges are underrepresented. We also saw that most of the usage revolves around social support and the sharing of personal experiences, and the groups give individuals a sense of belonging. In ‘Online collective identities for autism: The perspective of Brazilian Parents’, we discuss the collective identities of autism that circulate in the communities of parents. There, we observed that these identity models, which can overlap, fit in Castells' (2010) categories of legitimising identities, re-affirming traditional institutions and the medical view of autism; resistant identities, formed by those who are looking for social support; and project identities, promoting new views of autism based on the concept of neurodiversity. The last paper, ‘The digital as prosthesis: The role of social media in autistic people’s live’, discusses how social media, in this case Facebook, can operate as a sort of cognitive prosthesis mediating the challenges that autistic people have in communication and social interaction.
With these four papers, we expect to have advanced some of the concepts that relate to social media usage by the autism community, acknowledging that many other aspects are still in need of observation and we hope these findings can be used as a departure point for future research.
Date: Tuesday the 15th of January 2019, 4 PM
Place: Stadscampus, Hof van Liere, Willem Elsschotzaal (Prinstraat 13b, 2000 Antwerpen)
The defense is followed by a reception.
Please confirm your attendance at Debora.Antunes@uantwerpen.be