A Passing Problem: Evaluating Harm and Benefit in Autism Research

Ari Ne'eman; Kenneth A. Richman; Allison M. McCarthy; Daniel A. Wilkenfeld

doi:10.1002/eahr.500188

Un probleme de passing : evaluation des prejudices et des benefices dans la recherche sur l'autisme

Titre original en anglais : A Passing Problem: Evaluating Harm and Benefit in Autism Research

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Ne'eman, A., Richman, K. A., McCarthy, A. M., & Wilkenfeld, D. A. (2023). A Passing Problem: Evaluating Harm and Benefit in Autism Research. Ethics & Human Research, 45(6), 2-18. https://doi.org/10.1002/eahr.500188

Date de publication: 01/11/2023 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais

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Projet Chercheur·euses autistes

Auteurs

Auteur·ices des publications

4

Auteur·ices de la publication identifié·es comme autistes

2 / 4 (50,0 %)

Résumé

La recherche sur l'autisme cherche frequemment a evaluer des interventions ou a eclairer leur developpement. Malheureusement, les chercheurs supposent souvent que l'intervention en autisme devrait reduire les traits autistiques, fixant ainsi effectivement comme objectif du traitement que les personnes autistes tentent de « passer » pour non autistes. Un ensemble croissant de donnees probantes met en evidence de graves prejudices potentiels lies aux exigences de passing. Nous examinons pourquoi il est important que les comites d'examen institutionnel (IRB) examinent attentivement la recherche sur l'autisme afin d'y reperer les exigences de passing clinique, et nous documentons l'existence de telles exigences dans les mesures de resultats couramment employees dans la recherche sur l'autisme. Nous proposons un cadre ethique que les IRB et d'autres peuvent utiliser pour evaluer la pertinence ethique d'objectifs de traitement particuliers dans la recherche sur les interventions en autisme ou la recherche adjacente aux interventions, en soulignant que les objectifs de traitement devraient viser une finalite benefique de non-passing et constituer le moyen le moins contraignant d'atteindre une telle finalite. Nous mettons egalement en lumiere des pratiques potentiellement prometteuses pour les IRB, les chercheurs et les autres parties prenantes cherchant a aborder ces questions dans la recherche sur l'autisme.

Autism research frequently seeks to evaluate interventions or inform their development. Unfortunately, researchers often assume that autism intervention should reduce autistic traits, effectively setting as a goal of treatment that autistic people attempt to "pass" as nonautistic. A growing body of evidence highlights serious potential harms from passing demands. We discuss why it is important for institutional review boards (IRBs) to scrutinize autism research for clinical passing demands, and we document the existence of such demands in outcome measures commonly employed in autism research. We propose an ethical framework for IRBs and others to make use of in evaluating the ethical appropriateness of particular treatment goals in autism intervention or intervention-adjacent research, emphasizing that treatment goals should be in pursuit of a beneficial nonpassing purpose and be the least burdensome means of accomplishing such a purpose. We also highlight potential promising practices for IRBs, investigators, and other stakeholders seeking to address these issues in autism research.

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 11:31.

Références citées

66

Nombre total de références citées intégrées pour cette publication.

Références citées avec un·e auteur·ice identifié·e comme autiste

18 / 66 (27,3 %)

Occurrences d’auteur·ices cité·es identifié·es comme autistes

25 / 189 (13,2 %)

Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 25 / 90 (27,8 %). Auteurices cité·es distinct·es identifié·es comme autistes : 15 / 163 (9,2 %).

Occurrences citées rattachées à la base AutiHub

90 / 189 (47,6 %)

Auteurices cité·es distinct·es rattaché·es : 66 / 163 (40,5 %)

Occurrences rattachées, non identifiées comme autistes

65 / 90 (72,2 %)

Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 65 / 189 (34,4 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 51 / 66 (77,3 %).

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