Autistic discussion forums: insights into the topics that clinicians don’t know about

Abstract

BackgroundUser-led autism discussion forums provide a wealth of information about autistic lived experiences, albeit oriented toward those who regularly use computers. We contend that healthcare professionals should read autism discussion forums to gain insight, be informed, and in some cases, to correct assumptions about autistic persons’ lives and possibilities. But experts may be dismissive of user-led forums, believing forums to be filled with myths, misinformation, and combative postings. The questions motivating our research were: Do online forums raise issues that are educational for clinicians and other stakeholders? Are forums useful for those who do empirical research?MethodContent analysis was conducted on 300 posts (62,000 words) from Reddit, Quora, and Wrong Planet. Forums were sampled to reflect broad topics; posts were selected sequentially from the identified forums. The authors read through posts in the Excel sheet, highlighting statements that were the main ideas of the post, to discern both broad categories of topics and more specific topics. We coded content pertinent to classic autism myths and analyzed attitudes towards myths such as ‘lack emotion’ and ‘cannot form relationships.’ To document whether forum posts discuss topics that are not widely known outside of elite experts, we compared discussion content to new material about autism contained in the March 2022 DSM 5 Text revision.ResultsClassic autism myths were discussed with examples of when elements of myths may be valid. Posters described cases where parents or therapists believed myths. Experts may believe autism myths due to rapid changes in diagnostic practices and due to their lack of knowledge regarding the characteristics of autistic people who have typical intellectual abilities. We conclude that forums contain high-value information for clinicians because all concepts in the DSM 5 text revision were discussed by posters in the years before the text revision appeared. Ideas that are only slowly becoming part of the research literature are discussed at length in forums. Reading and analyzing forums is useful for both clinicians and scientists. In addition, the relative ease of forum analysis lowers the bar for entry into the research process.