Expériences bouleversantes dans la vie de jeunes neurodivergents : une analyse qualitative des récits d'adolescents diagnostiqués avec un trouble du déficit de l'attention avec hyperactivité et/ou un autisme

Titre original en anglais : Upsetting experiences in the lives of neurodivergent young people: A qualitative analysis of accounts of adolescents diagnosed with attention‐deficit/hyperactivity disorder and/or autism

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». un auteur·ice de cette publication est identifié·e comme autiste dans le projet.

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Pavlopoulou, G., Chandler, S., Lukito, S., Kakoulidou, M., Jackson, I., Ly, E., Matejko, M., Balwani, B., Boyens, T., Poulton, D., Harvey-Nguyen, L., Baker, S., Sonuga-Barke, E. J., & team, t. R. (2025). Upsetting experiences in the lives of neurodivergent young people: A qualitative analysis of accounts of adolescents diagnosed with attention‐deficit/hyperactivity disorder and/or autism. JCPP Advances, 6(2), Article e70038. https://doi.org/10.1002/jcv2.70038

Date de publication: 19/08/2025 Ajout dans AutiHub: 16/10/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
14
Auteur·ices de la publication identifié·es comme autistes
1 / 14 (7,1 %)
  1. Georgia Pavlopoulou
  2. Susie Chandler
  3. Steve Lukito
  4. Myrofora Kakoulidou
  5. Isabel Jackson
  1. Elisa Ly
  2. Maciej Matejko *
  3. Beta Balwani
  4. Tiegan Boyens
  5. Dorian Poulton
  1. Luke Harvey-Nguyen
  2. Sylvan Baker
  3. Edmund J.S. Sonuga-Barke
  4. the RE‐STAR team

Résumé

Résumé Contexte Les récits de dysrégulation émotionnelle dans l'autisme et le trouble du déficit de l'attention avec hyperactivité (ADHD) reposent généralement sur des observations externes d'adultes ancrées dans des conceptions neurotypiques des réponses émotionnelles. Ces récits ne parviennent souvent pas à situer les réponses émotionnelles des personnes neurodivergentes dans le contexte des expériences bouleversantes auxquelles elles sont confrontées ; des informations que les jeunes eux-mêmes sont les mieux à même de fournir. Méthodes Nous avons interrogé 57 adolescents (11-15 ans ; 19 filles) diagnostiqués avec un ADHD (n = 24), un autisme (n = 21) ou les deux (n = 12), au sujet de leur expérience d'événements bouleversants, à l'aide d'un guide d'entretien semi-structuré co-conçu. Une analyse thématique réflexive a généré des thèmes communs avec des nuances spécifiques au diagnostic. Résultats Quatre thèmes ont été dégagés : désaffiliation sociale, aliénation et conflit ; besoin de masquage ; doute de soi, dégoût de soi, embarras ; et surstimulation/inadéquation sensorielle. Les expériences bouleversantes, pour les participants avec ADHD, étaient généralement perçues comme étant déclenchées par des agents externes cherchant à imposer un contrôle, et/ou par un sentiment d'injustice ; pour les participants autistes, elles étaient souvent liées à des sentiments de « ne pas appartenir » et d'aliénation. Le masquage, chez les participants autistes, incluait le fait de « cacher » les émotions négatives afin de protéger les autres de leur intensité ; tandis que dans l'ADHD, le masquage impliquait habituellement de réprimer le bouleversement émotionnel afin de se protéger des conflits ou des conséquences. Les personnes ayant un diagnostic conjoint ont rapporté une combinaison de ces expériences, souvent ressenties plus intensément. Conclusions Les récits à la première personne des réponses émotionnelles pourraient apporter de nouvelles perspectives susceptibles d'affiner les récits actuels fondés sur la dysrégulation concernant l'ADHD ou l'autisme.

Abstract Background Accounts of emotional dysregulation in autism and attention‐deficit/hyperactivity disorder (ADHD) are typically based on external adult observations anchored in neurotypical notions of emotional responding. These often fail to place neurodivergent people's emotional responses in the context of the upsetting experiences they face; information best provided by the young people themselves. Methods We interviewed 57 adolescents (11–15 years; 19 females) with diagnoses of ADHD (n = 24), autism (n = 21) or both (n = 12), about their experience of upsetting events using a co‐designed semi‐structured interview schedule. Reflexive thematic analysis generated shared themes with diagnosis‐specific nuances. Results Four themes were extracted: social dislocation, alienation and conflict; need to mask; self‐doubt, loathing, embarrassment; and over stimulation/sensory mismatch. Upsetting experiences, for ADHD participants, were typically perceived as instigated by external agents trying to impose control, and/or a sense of injustice; for autistic participants they often related to feelings of ‘not belonging’ and alienation. Masking, for autistic participants, included ‘hiding’ negative emotions to protect others from their intensity; whereas in ADHD, masking usually involved supressing emotional upset to protect oneself from conflict or consequences. Those with a joint diagnosis reported a combination of these experiences, often felt more intensely. Conclusions First‐person accounts of emotional responding could provide new insights with potential to refine current dysregulation‐based accounts of ADHD or autism.

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Références citées
63
Avec un DOI
61
Sans DOI, à partir du texte brut de la bibliographie
2
6 / 63 (9,5 %) références citées comprennent au moins une personne identifiée comme autiste.
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0 / 63 (0,0 %)
Références avec noms d’auteurices détectés
63 / 63 (100,0 %)
Sans nom d’auteurice détecté
0
Sans titre structuré
0
Sans identifiant stable
2
Références avec noms bruts d’auteurices restant à vérifier
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Noms d’auteurices détectés dans la bibliographie citée
307
À partir du DOI ou de métadonnées externes
307
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
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0
139 / 307 (45,3 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 168 / 307 (54,7 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
12 / 307 (3,9 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 12 / 139 (8,6 %). Personnes distinctes identifiées comme autistes : 10 / 246 (4,1 %).
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