Vers la mesure de l’épuisement autistique

Titre original en anglais : Towards the measurement of autistic burnout

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Arnold, S. R. C., Higgins, J. M., Weise, J., Desai, A., Pellicano, E., & Trollor, J. N. (2023). Towards the measurement of autistic burnout. Autism, 27(7), 1933-1948. https://doi.org/10.1177/13623613221147401

Date de publication: 13/01/2023 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
1 / 6 (16,7 %)
  1. Samuel R. C. Arnold
  2. Julianne M. Higgins *
  3. Janelle Weise
  1. Aishani Desai
  2. Elizabeth Pellicano
  3. Julian N Trollor

Résumé

Des études émergent, documentant l’expérience de fatigue, d’épuisement et de perte de fonctionnement que les adultes autistes décrivent depuis longtemps comme un épuisement autistique. De nouveaux outils d’évaluation sont nécessaires pour permettre l’identification et le diagnostic. Ici, nous avons cherché à identifier les facteurs associés à la sévérité, à développer une évaluation de l’épuisement autistique et à tester l’outil AASPIRE Autistic Burnout Measure avant publication. Une enquête coproduite auprès de 141 adultes autistes ayant vécu un épuisement autistique (98 % au-dessus du seuil pour la dépression) a été soumise à une analyse factorielle exploratoire et à une réduction d’échelle afin d’identifier un regroupement d’Autistic Burnout Severity Items. Les Autistic Burnout Severity Items ont montré une forte cohérence interne globale et une cohérence interne acceptable pour les quatre facteurs. Le camouflage et la dépression étaient associés aux Autistic Burnout Severity Items, après ajustement pour la variation de l’alexithymie, de l’intéroception, des comportements répétitifs, des sensibilités sensorielles et de la sévérité de l’autisme. Certains éléments suggèrent que l’Autistic Burnout Measure pourrait ne pas être aussi robuste que les Autistic Burnout Severity Items, en particulier parce qu’il a montré une relation significative avec la dépression mais non avec le camouflage. Nos résultats, ainsi que la littérature récente, mettent en évidence un phénomène central, comprenant l’épuisement, le retrait et la surcharge cognitive, associé à des facteurs de stress potentiellement propres aux personnes autistes. Une distinction plus poussée avec le shutdown autistique et d’autres affections est nécessaire dans les travaux visant à mesurer l’épuisement autistique. Résumé grand public L’épuisement autistique est évoqué depuis un certain temps par des adultes autistes sur des blogs et les réseaux sociaux. Désormais, la recherche décrit la fatigue, l’épuisement et d’autres symptômes connexes vécus par les personnes autistes. Nous avons besoin de nouvelles façons d’aider à identifier l’épuisement autistique. Dans cette étude, nous avons testé un nouveau questionnaire appelé AASPIRE Autistic Burnout Measure, et nous avons étudié les éléments liés à un épuisement autistique plus sévère. Nous avons également essayé un groupe d’Autistic Burnout Severity Items que nous avons créés. En travaillant avec un chercheur autiste, nous avons élaboré les Autistic Burnout Severity Items sur la base de définitions publiées de l’épuisement autistique. Des adultes autistes (n = 141) ayant vécu un épuisement autistique ont rempli une enquête en ligne. Nous avons constaté que l’épuisement autistique était lié au camouflage et à la dépression. L’outil Autistic Burnout Measure était associé à la dépression, mais non au camouflage. Il n’était pas très précis pour distinguer les participants qui vivaient alors un épuisement de ceux qui rapportaient leur expérience passée. Les Autistic Burnout Severity Items pourraient présenter des problèmes liés à l’addition des sous-échelles pour mesurer l’épuisement autistique. Des travaux supplémentaires sont nécessaires sur la manière de mesurer l’épuisement autistique. Notre recherche et d’autres études récentes montrent que les personnes autistes vivent une combinaison d’épuisement, de retrait et de problèmes de concentration et de pensée. L’épuisement semble être lié au stress vécu par les personnes autistes dans leur vie quotidienne. Nous avons besoin de davantage de recherches pour comprendre la différence entre l’épuisement autistique et d’autres affections et expériences. Nous devons développer des outils d’évaluation pouvant aider à identifier cet épuisement.

Studies are emerging documenting the experience of fatigue, exhaustion and loss of functioning that has long been described by autistic adults as autistic burnout. New assessment tools are needed to enable identification and diagnosis. Here, we sought to identify factors associated with severity, develop an autistic burnout assessment and test the prepublication AASPIRE Autistic Burnout Measure tool. A co-produced survey of 141 autistic adults with experience of autistic burnout (98% above cut-off for depression) was subjected to exploratory factor analysis and scale reduction to identify a grouping of Autistic Burnout Severity Items. Autistic Burnout Severity Items showed strong overall internal consistency and acceptable internal consistency across four factors. Masking and depression were associated with the Autistic Burnout Severity Items, once variation in alexithymia, interoception, repetitive behaviours, sensory sensitivities and autism severity had been adjusted for. There is some suggestion that the Autistic Burnout Measure may not be as robust as the Autistic Burnout Severity Items, particularly as it showed a significant relationship with depression but not masking. Our findings alongside recent literature highlight a core phenomenon, comprising exhaustion, withdrawal and cognitive overload, associated with stressors potentially unique to autistic people. Further disambiguation from autistic shutdown and other conditions is needed in work towards the measurement of autistic burnout. Lay abstract Autistic burnout has been talked about by autistic adults for some time on blogs and in social media. Now, research describes fatigue, exhaustion and other related symptoms experienced by autistic people. We need new ways to help identify autistic burnout. In this study, we tested a new questionnaire called the AASPIRE Autistic Burnout Measure, and we investigated things that are linked to worse autistic burnout. We also trialled a group of Autistic Burnout Severity Items that we made. Working with an autistic researcher, we made the Autistic Burnout Severity Items based on published definitions of autistic burnout. Autistic adults ( n = 141) who had experienced autistic burnout completed an online survey. We found that autistic burnout was connected to masking and depression. The Autistic Burnout Measure tool was associated with depression but not with masking. It was not very accurate in telling apart participants who were currently experiencing burnout versus those who were reporting on their past experience. The Autistic Burnout Severity Items might have problems with subscales adding together to measure autistic burnout. More work is needed on how to measure autistic burnout. Our research and other recent studies show autistic people experience a combination of exhaustion, withdrawal and problems with their concentration and thinking. Burnout seems to be linked to the stress experienced by autistic people in their daily lives. We need more research to understand the difference between autistic burnout and other conditions and experiences. We need to develop assessment tools that can help identify this burnout.

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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
57
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
7 / 57 (12,3 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
10 / 224 (4,5 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 10 / 85 (11,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 9 / 174 (5,2 %).
Occurrences citées rattachées à la base AutiHub
85 / 224 (37,9 %)
Auteurices cité·es distinct·es rattaché·es : 61 / 174 (35,1 %)
Occurrences rattachées, non identifiées comme autistes
75 / 85 (88,2 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 75 / 224 (33,5 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 52 / 61 (85,2 %).
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