Commentaire : lutter contre la stigmatisation par la conception relationnelle de la recherche

Titre original en anglais : Commentary: Addressing stigma through relational research design

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Heyworth, M. (2024). Commentary: Addressing stigma through relational research design. Neurodiversity, 2. https://doi.org/10.1177/27546330241230428

Date de publication: 01/02/2024 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
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1 / 1 (100,0 %)
  1. Melanie Heyworth *

Résumé

L’histoire de la recherche sur l’éducation d’enfants autistes est compliquée par l’héritage de la « culpabilisation des mères », qui continue de se produire, bien qu’indirectement ou implicitement. Les parents d’enfants autistes vivent souvent la stigmatisation et l’intériorisent, celle-ci découlant des messages selon lesquels une parentalité sous-optimale peut exacerber les traits autistiques d’un enfant. Cette stigmatisation est reprise par les parents d’autres groupes neurodivergents, y compris le TDAH. Pour les parents neurodivergents d’enfants neurodivergents, cette stigmatisation peut être cumulée, puisque la stigmatisation est vécue à la fois en tant qu’individu neurodivergent et en tant que parent d’un individu neurodivergent. Les chercheurs ont le devoir éthique d’être attentifs aux expériences de stigmatisation lorsque nous étudions tout groupe vulnérable, afin que la stigmatisation ne devienne pas un obstacle à la participation. Dans ce commentaire, je réfléchis de manière critique à une étude que j’ai conçue, qui n’abordait pas adéquatement la stigmatisation potentielle des parents et n’anticipait pas suffisamment l’impact des expériences de stigmatisation sur la participation. J’expose ensuite les étapes que j’ai suivies pour modifier la conception, dans le cadre d’une éthique relationnelle du soin, afin de reconnaître et de prendre en compte la stigmatisation qui aurait autrement pu exclure les parents d’enfants autistes — en particulier les parents eux-mêmes autistes ou autrement neurodivergents — de la participation.

The history of research on parenting autistic children is complicated by the inheritance of “mother-blaming,” which continues to occur, albeit indirectly or implicitly. Parents of autistic children often experience and internalize stigma, which arises from the messaging that suboptimal parenting can exacerbate a child's autistic traits. This stigmatization is echoed by parents of other neurodivergent groups, including ADHD. For neurodivergent parents of neurodivergent children, this stigma may be compounded, since stigma is experienced both as a neurodivergent individual, and as the parent of a neurodivergent individual. Researchers have an ethical duty to pay attention to experiences of stigma when we study any vulnerable group so that stigma does not become a barrier to participation. In this commentary, I critically reflect on a study I designed, which did not adequately address parents’ potential stigma or sufficiently anticipate the impact of experiences of stigma on participation. I then outline the steps I took to modify the design, framed within a relational ethics of care, to acknowledge and account for the stigma that might have otherwise excluded parents of autistic children—especially parents who are autistic and otherwise neurodivergent themselves—from participating.

Bibliographie citée par cette référence

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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
60
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
4 / 60 (6,7 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
10 / 194 (5,2 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 10 / 65 (15,4 %). Auteurices cité·es distinct·es identifié·es comme autistes : 6 / 171 (3,5 %).
Occurrences citées rattachées à la base AutiHub
65 / 194 (33,5 %)
Auteurices cité·es distinct·es rattaché·es : 44 / 171 (25,7 %)
Occurrences rattachées, non identifiées comme autistes
55 / 65 (84,6 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 55 / 194 (28,4 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 38 / 44 (86,4 %).
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