Social media shaping autism perception and identity

Autism. 2024 Feb 22:13623613241230454. doi: 10.1177/13623613241230454. Online ahead of print.

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.

Keywords: autistic adults; autistic communities; autistic identity; information-seeking behaviour; reflexive thematic analysis; social media.