自闭症讨论论坛：洞悉临床医生未知的话题。
Autistic discussion forums: insights into the topics that clinicians don't know about.
作者信息
Caldwell-Harris Catherine L, McGlowan Tiffany, Beitia Katherine
机构信息
Department of Psychological and Brain Sciences, Boston University, Boston, MA, United States.
出版信息
Front Psychiatry. 2023 Dec 19;14:1271841. doi: 10.3389/fpsyt.2023.1271841. eCollection 2023.
BACKGROUND
User-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?
METHOD
Content 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.
RESULTS
Classic 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.
背景
由用户主导的自闭症讨论论坛提供了大量关于自闭症生活经历的信息，尽管这些信息是面向经常使用电脑的人群。我们认为医疗保健专业人员应该阅读自闭症讨论论坛，以获得见解、了解情况，并且在某些情况下，纠正对自闭症患者生活及可能性的假设。但专家们可能会轻视由用户主导的论坛，认为论坛充斥着神话、错误信息和攻击性的帖子。促使我们进行这项研究的问题是：在线论坛提出的问题对临床医生和其他利益相关者有教育意义吗？论坛对进行实证研究的人有用吗？
方法
对来自Reddit、Quora和Wrong Planet的300个帖子（62000字）进行了内容分析。对论坛进行抽样以反映广泛的主题；从选定的论坛中依次选取帖子。作者在Excel表格中通读帖子，突出作为帖子主要观点的陈述，以辨别广泛的主题类别和更具体的主题。我们对与经典自闭症神话相关的内容进行编码，并分析对“缺乏情感”和“无法建立关系”等神话的态度。为了记录论坛帖子是否讨论了精英专家圈子之外鲜为人知的话题，我们将讨论内容与2022年3月《精神疾病诊断与统计手册》第5版文本修订版中关于自闭症的新材料进行了比较。
结果
讨论了经典自闭症神话，并举例说明了神话元素可能有效的情况。发帖者描述了父母或治疗师相信这些神话的案例。由于诊断实践的快速变化以及专家对具有典型智力水平的自闭症患者特征缺乏了解，他们可能会相信自闭症神话。我们得出结论，论坛为临床医生提供了高价值信息，因为在《精神疾病诊断与统计手册》第5版文本修订版出现前几年，发帖者就讨论了该修订版中的所有概念。论坛中详细讨论了那些只是逐渐成为研究文献一部分的观点。阅读和分析论坛对临床医生和科学家都有用。此外，论坛分析相对容易，降低了进入研究过程的门槛。
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