Forums de discussion autistiques : aperçu des sujets que les cliniciens ne connaissent pas

Titre original en anglais : Autistic discussion forums: insights into the topics that clinicians don’t know about

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Caldwell‐Harris, C. L., McGlowan, T., & Beitia, K. (2023). Autistic discussion forums: insights into the topics that clinicians don’t know about. Frontiers in Psychiatry, 14, 1271841-1271841. https://doi.org/10.3389/fpsyt.2023.1271841

Date de publication: 19/12/2023 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
1 / 3 (33,3 %)
  1. Catherine L. Caldwell‐Harris *
  2. Tiffany McGlowan
  3. Katherine Beitia

Résumé

Contexte : Les forums de discussion sur l’autisme dirigés par les utilisateurs fournissent une mine d’informations sur les expériences vécues autistiques, bien qu’ils soient orientés vers les personnes qui utilisent régulièrement des ordinateurs. Nous soutenons que les professionnels de santé devraient lire les forums de discussion sur l’autisme afin d’acquérir des connaissances, d’être informés et, dans certains cas, de corriger leurs hypothèses concernant la vie et les possibilités des personnes autistiques. Mais les experts peuvent être méprisants à l’égard des forums dirigés par les utilisateurs, estimant que les forums sont remplis de mythes, de désinformation et de publications conflictuelles. Les questions qui ont motivé notre recherche étaient les suivantes : Les forums en ligne soulèvent-ils des questions qui sont instructives pour les cliniciens et les autres parties prenantes ? Les forums sont-ils utiles à ceux qui mènent des recherches empiriques ? Méthode : Une analyse de contenu a été menée sur 300 publications (62 000 mots) provenant de Reddit, Quora et Wrong Planet. Les forums ont été échantillonnés afin de refléter des sujets généraux ; les publications ont été sélectionnées séquentiellement à partir des forums identifiés. Les auteurs ont lu les publications dans la feuille Excel, en mettant en évidence les énoncés qui constituaient les idées principales de la publication, afin de discerner à la fois de grandes catégories de sujets et des sujets plus spécifiques. Nous avons codé le contenu relatif aux mythes classiques sur l’autisme et analysé les attitudes envers des mythes tels que « absence d’émotion » et « incapacité à former des relations ». Afin de documenter si les publications des forums abordent des sujets qui ne sont pas largement connus en dehors des experts d’élite, nous avons comparé le contenu des discussions au nouveau matériel sur l’autisme contenu dans la révision textuelle de mars 2022 du DSM 5. Résultats : Les mythes classiques sur l’autisme ont été discutés avec des exemples de situations dans lesquelles des éléments des mythes peuvent être valides. Les auteurs des publications ont décrit des cas où des parents ou des thérapeutes croyaient aux mythes. Les experts peuvent croire aux mythes sur l’autisme en raison des changements rapides dans les pratiques diagnostiques et de leur manque de connaissances concernant les caractéristiques des personnes autistiques ayant des capacités intellectuelles typiques. Nous concluons que les forums contiennent des informations de grande valeur pour les cliniciens, car tous les concepts de la révision textuelle du DSM 5 ont été discutés par les auteurs des publications dans les années précédant la parution de la révision textuelle. Des idées qui ne deviennent que lentement partie intégrante de la littérature de recherche sont discutées en détail dans les forums. Lire et analyser les forums est utile tant pour les cliniciens que pour les scientifiques. En outre, la facilité relative de l’analyse des forums abaisse le seuil d’entrée dans le processus de recherche.

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.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
61
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
10 / 61 (16,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
12 / 155 (7,7 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 12 / 53 (22,6 %). Auteurices cité·es distinct·es identifié·es comme autistes : 9 / 147 (6,1 %).
Occurrences citées rattachées à la base AutiHub
53 / 155 (34,2 %)
Auteurices cité·es distinct·es rattaché·es : 45 / 147 (30,6 %)
Occurrences rattachées, non identifiées comme autistes
41 / 53 (77,4 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 41 / 155 (26,5 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 36 / 45 (80,0 %).
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