« La plupart des gens n'ont aucune idée de ce qu'est l'autisme » : analyse de la divulgation de l'autisme à l'aide de l'analyse des réseaux sociaux

Titre original en anglais : ‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis

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Edwards, C., Love, A. M., Thom-Jones, S., Cai, R. Y., Nguyen, B. T. H., & Gibbs, V. (2023). ‘Most people have no idea what autism is’: Unpacking autism disclosure using social media analysis. Autism, 28(5), 1107-1119. https://doi.org/10.1177/13623613231192133

Date de publication: 22/08/2023 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
6
Auteur·ices de la publication identifié·es comme autistes
2 / 6 (33,3 %)
  1. Chris Edwards *
  2. Abigail M.A. Love
  3. Sandra Thom-Jones *
  1. Ru Ying Cai
  2. Boyd Thai Hoang Nguyen
  3. Vicki Gibbs

Résumé

La divulgation de l'autisme peut être une décision compliquée que vivent les personnes autistes. Les issues positives peuvent inclure des sentiments d'acceptation et de soutien, mais les issues négatives peuvent inclure la stigmatisation et la discrimination. Bien qu'un essor de la recherche sur ce sujet ait permis de mieux comprendre la divulgation de l'autisme, les méthodologies utilisées peuvent avoir limité les personnes qui contribuaient à la conversation et aux données. Pour surmonter cela, nous avons analysé 3 ans (2020−2022) de données issues des réseaux sociaux (Reddit et Twitter), car il s'agissait d'informations publiques qui ne reposaient pas sur la collecte de données par les chercheurs. Une analyse thématique réflexive de 3121 publications a conduit à la production de quatre thèmes : les gens ne comprennent pas l'autisme (avec des expériences liées à l'emploi, aux rencontres amoureuses, aux soins de santé et à la santé mentale), les personnes autistes veulent simplement de la vie privée et du respect, les personnes autistes peuvent nous faire avancer et les personnes non autistes doivent assumer davantage de responsabilités. Nous examinons la manière dont les adultes autistes vivent au quotidien les répercussions du manque de compréhension de l'autisme par la société, qu'ils le divulguent ou non, et le fait qu'il incombe à tout le monde de remettre en question les stéréotypes négatifs et de promouvoir une société plus inclusive. Résumé vulgarisé La divulgation de l'autisme – c'est-à-dire le partage de leur diagnostic ou de leur identité autiste avec une ou plusieurs personnes – est une décision difficile pour de nombreuses personnes autistes. Bien que dire aux gens qu'elles sont autistes puisse être positif et utile, cela peut également créer de nombreux problèmes. Ce que nous avons appris, c'est que la divulgation est vraiment compliquée. Plutôt que de poser à des participants à la recherche des questions sur ce qui pourrait se produire, nous avons examiné ce que les gens disaient dans des publications publiques sur les réseaux sociaux (Reddit et Twitter) au sujet de ce qui s'était réellement produit. Nous avons utilisé trois années de publications liées à la divulgation de l'autisme provenant d'un large éventail d'adultes (autistes et non autistes). Quatre idées principales ont été dégagées de nos données, le résultat essentiel étant que la société ne comprend pas l'autisme. Ce manque de compréhension crée des problèmes pour les personnes autistes au travail, dans les rencontres amoureuses, dans les soins de santé et en matière de santé mentale. Les idées restantes étaient que les personnes autistes devraient avoir droit à la vie privée et être traitées avec respect, que la représentation des personnes autistes peut aider la société et que les personnes non autistes doivent faire davantage pour aider les personnes autistes. Nos résultats confirment que la société doit faire davantage par l'intermédiaire de la défense des droits des personnes autistes, d'une meilleure représentation dans les médias et d'un plus grand nombre de modèles publics. Accroître l'exactitude de la compréhension de l'autisme dans l'ensemble de la société permettra aux personnes autistes de se sentir plus en sécurité pour divulguer leur autisme si elles le souhaitent.

Autism disclosure can be a complicated decision that autistic people experience. Positive outcomes can include feelings of acceptance and support, but negative outcomes can include stigma and discrimination. Although a surge in research on this topic has led to more understanding around autism disclosure, the methodologies used may have limited who was contributing to the conversation and data. To overcome this, we analyzed 3 years (2020−2022) of social media data (Reddit and Twitter) as this was public information that did not rely on researcher data collection. Reflexive thematic analysis of 3121 posts led to the generation of four themes: People do not understand autism (with experiences related to employment, dating, healthcare and mental health), autistic people just want privacy and respect, autistic people can lead us forward and non-autistic people need to assume more responsibility. We discuss how autistic adults experience the impact of society’s lack of understanding of autism on a daily basis whether they disclose or not, and that it is everybody’s responsibility to challenge negative stereotypes and promote a more inclusive society. Lay abstract Autism disclosure – that is sharing their autism diagnosis or identity with a person or people – is a difficult decision for many autistic people. While telling people they are autistic can be positive and helpful, it can also create a lot of problems. What we have learnt is that disclosure is really complicated. Rather than asking research participants questions about what might happen, we looked at what people were saying on public social media posts (Reddit and Twitter) about what did happen. We used three years of posts that were related to autism disclosure from a wide range of adults (autistic and non-autistic). Four main ideas were created from our data, with the key finding being that society does not understand autism. This lack of understanding creates problems for autistic people in work, dating, healthcare and mental health. The remaining ideas were that autistic people should have privacy and be treated with respect, that autistic representation can help society and that non-autistic people need to do more to help autistic people. Our findings support that society needs to do more through autism advocacy, better media representation and more public role models. Increasing the accuracy of understanding of autism across society will mean that autistic people can feel safer to disclose if they want to.

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
55
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
8 / 55 (14,5 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
8 / 176 (4,5 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 8 / 79 (10,1 %). Auteurices cité·es distinct·es identifié·es comme autistes : 7 / 150 (4,7 %).
Occurrences citées rattachées à la base AutiHub
79 / 176 (44,9 %)
Auteurices cité·es distinct·es rattaché·es : 57 / 150 (38,0 %)
Occurrences rattachées, non identifiées comme autistes
71 / 79 (89,9 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 71 / 176 (40,3 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 50 / 57 (87,7 %).
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