This paper presents an overview of how social media is used by Brazilian autism communities, aiming at including the perspectives of the Global South into discussions surrounding the topic, which are mostly focusing on English speaking groups. The results are based on a digital ethnography conducted in three Facebook groups about autism. We observed that groups composed by parents looking for information and social support are predominant in Brazilian social media. Autistic people also engage in information gathering and the exchange of personal experiences, mainly the ones with Asperger Syndrome. Additionally, we saw that Facebook offers enough affordances to allow the participation of people with different levels of digital literacy. However, there is still a lack of representation from autistic people who have more challenges, such as non-verbal individuals, which may be a consequence of the digital divide, not only in terms of economical means, but also education and inclusion.
This paper reflects on the three main ethical challenges we faced when conducting digital ethnography in three autism Brazilian communities on Facebook: how to position oneself as a researcher, how to deal with the identity of participants, and how to manage data when anonymity is not enforced. After careful consideration of these issues and taking into consideration questions of authorship and vulnerability, we concluded that, firstly, as researchers, we wanted to be more than mere observers of our participants so we aimed for a mutual sharing and involvement between participants and researchers. Secondly, we believe that voice and authorship matter, so we gave our interviewees the choice of being anonymised or not. Finally, we had in mind that our participants may not be fully aware of the consequences of academic publishing, therefore sensitive topics as well as data gathered in the communities were always anonymised.
I hereby declare having conducted this academic work with integrity. I confirm that I have not used plagiarism or any form of undue use of information or falsification of results along the process leading to its elaboration. I further declare that I have fully acknowledged the Code of Ethical Conduct of the University of Minho.
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