Reconnaître les expériences passées et présentes : vers une approche de la recherche sur l'autisme centrée sur la personne et éclairée par les traumatismes

Titre original en anglais : Recognizing Past and Present Experiences: Toward a Person-Oriented and Trauma-Informed Approach to Autism Research

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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Brake, J., Cox, S., & Palmer, P. (2024). Recognizing Past and Present Experiences: Toward a Person-Oriented and Trauma-Informed Approach to Autism Research. Scandinavian Journal of Disability Research, 26(1), 477-491. https://doi.org/10.16993/sjdr.1102

Publication date: 01/01/2024 Ajout dans AutiHub: 17/09/2026 Type: Article Langue de l’article: Anglais
Source éditeur (DOI) Texte intégral Source OpenAlex

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Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
1 / 3 (33,3 %)
  1. Jad Brake
  2. Susan Cox
  3. Pamela Palmer *

Résumé

Cet article s'appuie sur un modèle d'éthique de la recherche centrée sur la personne, conjointement à une approche éclairée par les traumatismes, afin de proposer un cadre méthodologique et de fournir des recommandations pratiques pour orienter la recherche impliquant des personnes autistes. Les expériences défavorables et traumatiques sont fréquentes dans l'autisme, et elles accroissent la vulnérabilité des personnes autistes dans la recherche. La participation à la recherche peut entraîner des préjudices supplémentaires et une retraumatisation si des précautions appropriées ne sont pas prises pour atténuer cette possibilité. En conséquence, ce travail analyse les influences potentielles et les implications éthiques des expériences négatives et des antécédents traumatiques pour le processus de recherche sur l'autisme. Il démontre également l'importance d'ajouter une perspective éclairée par les traumatismes à un modèle d'éthique de la recherche centrée sur la personne dans la recherche impliquant des personnes autistes. Malgré la forte prévalence des traumatismes dans l'autisme, les recherches portant sur la mise en oeuvre d'une approche éclairée par les traumatismes ou soulignant l'importance d'appliquer des principes éclairés par les traumatismes à la recherche sur l'autisme restent particulièrement rares et négligées.

This paper draws on a Person-Oriented Research Ethics model in conjunction with a Trauma-Informed Approach to suggest a methodological framework and provide practical recommendations to guide research involving autistic people. Adverse and traumatic experiences are common in autism, and they add to autistic persons’ vulnerability in research. Participation in research can lead to further harm and re-traumatization if appropriate care is not taken to mitigate this possibility. Accordingly, this work analyzes the potential influences and ethical implications of negative experiences and traumatic histories for the autism research process. It also demonstrates the importance of adding a trauma-informed lens to a Person-Oriented Research Ethics model in research involving autistic individuals. Despite the high prevalence of trauma in autism, research addressing the implementation of a Trauma-Informed Approach or emphasizing the significance of applying trauma-informed principles to autism research remains notably scarce and overlooked.

Bibliographie citée par cette référence

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Vue d’ensemble de la bibliographie citée

Ces indicateurs décrivent la bibliographie citée par cette publication. Un nom d’auteurice est compté chaque fois qu’il apparaît dans une référence citée : une même personne peut donc être comptée plusieurs fois. Les noms qui ne sont pas encore associés à un·e auteurice déjà présent·e dans AutiHub sont traités comme inconnus, pas comme non autistes. Dernier calcul : 19/09/2026 23:31.

Références citées
71
Avec un DOI
63
Sans DOI, à partir du texte brut de la bibliographie
4
2 / 71 (2,8 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
6 / 71 (8,5 %)
Références avec noms d’auteurices détectés
66 / 71 (93,0 %)
Sans nom d’auteurice détecté
5
Sans titre structuré
4
Sans identifiant stable
6
Références avec noms bruts d’auteurices restant à vérifier
4
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
200
À partir du DOI ou de métadonnées externes
199
À partir du texte brut validé de la bibliographie
1
Noms bruts déjà validés
1
Noms bruts restant à vérifier
9
56 / 200 (28,0 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 144 / 200 (72,0 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
2 / 200 (1,0 %)
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 : 2 / 56 (3,6 %). Personnes distinctes identifiées comme autistes : 2 / 179 (1,1 %).
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