社交媒体塑造自闭症感知和身份

Ingjerd Skafle , Elia Gabarron and Anders Nordahl-Hansen

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.

本研究旨在探索自闭症成年人如何使用社交媒体查找有关自闭症的信息，以及他们如何体验在线自闭症社区。关于自闭症患者通过社交媒体查找有关自闭症的信息的原理，以及如何从自闭症患者的角度看待这些信息的研究很少。12名挪威自闭症成年人（18-49岁）完成了半结构化访谈，他们讨论了社交媒体和关于自闭症和在线自闭症社区的内容。使用反思性主题分析，提出了三个主要主题。主题是（1）代表性和身份：在线旅程；（2）不可靠但必要的工具；和（3）紧张和不和谐。研究结果表明，尽管社交媒体被视为不可靠的信息来源，但参与者发现了帮助他们了解其经历的信息，而这些信息尚未被当前大多数研究文献和在线健康网站充分捕捉到。此外，自闭症患者的社交媒体团体不一定能创造社区感，因为参与者报告说他们被敌对讨论疏远了。本研究强调了通过官方健康渠道在网上获取更多有关自闭症的信息的重要性。