Social media shaping autism perception and identity

Abstract

The aim of this study was to explore how autistic adults experienced using social media to find information about autism, and how they experienced online autistic communities. There is little research on the rationale why autistic people look for information on autism via social media, and on how such information is perceived from an autistic viewpoint. Twelve Norwegian autistic adults (aged 18–49 years) completed semi-structured interviews where they discussed social media and content specifically about autism and online autistic communities. Using reflexive thematic analysis, three main themes were developed. The themes were (1) Representation and Identity: An Online Journey; (2) An Unreliable, but Necessary Tool; and (3) Tensions and Discord. The findings indicated that even though social media was looked upon as an unreliable information source, the participants found information that helped them to learn about their experiences which had not been fully captured by the majority of the current research literature and online health sites. Also, social media groups for autistic people did not necessarily create a sense of community, as participants reported feeling alienated by hostile discussions. This study highlights the importance of having a greater variation and availability of information about autism online through official health channels. Lay abstract This study suggested that social media can provide important information about autism to autistic people. We interviewed 12 autistic adults (aged 18–49 years) and talked to them about the use of social media to find both general information and content specifically about autism, autism identity and online autistic communities. There is little research exploring how autistic people find information about autism on social media and how that makes them feel. Therefore, it is important to ask autistic people about their experiences with using social media to obtain content about autism. The 12 participants explained that when they searched for information about autism on the official health pages, they often felt that the information they found was insufficient and could not answer their questions. In addition, they searched on social media platforms for information about autism despite that they perceived social media as an unreliable source. On the social media platforms, many found content that was positive in relation to their autistic identities. The participants also found comfort in some of the forums and social media groups and received helpful advice. Nevertheless, some of the discussions were aggressive and the participants felt alienated, which did not provide a sense of community online. The findings from the study may advice on what is missing in the official pages about autism, and highlight the need to involve the autistic community in writing the content on such platforms.