Un problème de 'passing': évaluer les préjudices et bénéfices dans la recherche sur l'autisme

Ajouté le 19/10/2024

Type de contenu

Article de revue du type Perspective (novembre 2023 ; anglais)

Ari Ne’eman * , Kenneth Richman , Allison McCarthy , Daniel Wilkenfeld *

A Passing problem: Evaluating harm and benefit in autism research publié dans la revue "Ethics & human research" n°45, vol.6, 16 pages , doi: 10.1002/eahr.500188

*Deux co-auteur·rices se sont publiquement identifié·es comme autistess. [En savoir plus sur cette mention]

=> Accès restreint et payant

Résumé/Présentation

La recherche sur l'autisme cherche souvent à évaluer des interventions ou à informer leur développement. Malheureusement, les chercheurs supposent souvent que l'intervention pour l'autisme doit réduire les traits autistiques, fixant ainsi comme objectif du traitement que les personnes autistes tentent de « passer » pour non autistes. Un nombre croissant de preuves souligne les graves préjudices potentiels des exigences de passing. Nous expliquons pourquoi il est important que les comités d'éthique de la recherche (IRB) examinent attentivement les recherches sur l'autisme en ce qui concerne les exigences cliniques de passing, et nous documentons l'existence de telles exigences dans les mesures de résultats couramment utilisées dans la recherche sur l'autisme. Nous proposons un cadre éthique pour les IRB et autres parties prenantes afin d'évaluer la pertinence éthique des objectifs de traitement dans les interventions pour l'autisme ou les recherches connexes, en soulignant que les objectifs de traitement doivent viser un but bénéfique non basé sur le passing et utiliser les moyens les moins contraignants pour atteindre un tel objectif. Nous mettons également en avant des pratiques prometteuses potentielles pour les IRB, les chercheurs et autres parties prenantes cherchant à aborder ces questions dans la recherche sur l'autisme.

Pour information:

(1) Les références en bleu sont des ressources référencées sur notre site.

(2) Les auteur·rices repris dans cette bibliographie dont le nom est en couleur ont publié d'autres ressources référencées sur le site. Cliquer sur le nom permet de voir la liste des ressources publiées et partagées sur le site.

(3) Les auteur·rices dont le nom est suivi d'une astérisque ont publiquement divulgué être autistes.

ASAN (2013). "ASAN Statement on Fein Study on Autism and “Recovery". January 23 2013 (Source)

N. Akhtar, M. Ann Gernsbacher (2008). "On Privileging the Role of Gaze in Infant Social Cognition". Child Dev Perspectives, 2(2). doi:10.1111/j.1750-8606.2008.00044.x

S. Baron-Cohen (2019) "The Concept of Neurodiversity Is Dividing the Autism Community". Scientific American(blog) April 30 2019 (Source)

B. Bierer, A. Ne’eman*, W. DeCormier Plosky, D. Strauss, B. Silverman, M. Ashley Stein (2021). "Integrating Supported Decision-Making into the Clinical Research Process". The American Journal of Bioethics, 21(11). doi:10.1080/15265161.2021.1980141

A. Binik (2014). "On the Minimal Risk Threshold in Research With Children". The American Journal of Bioethics, 14(9). doi:10.1080/15265161.2014.935879

K. Bottema-Beutel, H. Park, S. Yoon Kim (2018). "Commentary on Social Skills Training Curricula for Individuals with ASD: Social Interaction, Authenticity, and Stigma". J Autism Dev Disord, 48(3). doi:10.1007/s10803-017-3400-1

K. Bottema-Beutel, S. Crowley, M. Sandbank, T. Woynaroski (2021). "Adverse event reporting in intervention research for young autistic children". Autism, 25(2). doi:10.1177/1362361320965331

K. Bottema-Beutel, S. Crowley (2021). "Pervasive Undisclosed Conflicts of Interest in Applied Behavior Analysis Autism Literature". Front. Psychol., 12. doi:10.3389/fpsyg.2021.676303

S. Camarata (2022). "Balancing Respect for Individuals, Human Rights, Neurodiversity, and Positive Behavioral Support in Intervention Research for a Spectrum of Autistic People". J Speech Lang Hear Res, 65(4). doi:10.1044/2022_jslhr-21-00660

S. Carruthers, T. Charman, N. El Hawi, Y. Ah Kim, R. Randle, C. Lord, A. Pickles, I. (2021). "Utility of the Autism Diagnostic Observation Schedule and the Brief Observation of Social and Communication Change for Measuring Outcomes for a Parent‐Mediated Early Autism Intervention". Autism Research, 14(2). doi:10.1002/aur.2449

S. Cassidy (2018). "Risk Markers for Suicidality in Autis- tic Adults". Molecular Autism 9, no. 42

M. Dawson*, S. Fletcher-Watson (2022). "When autism researchers disregard harms: A commentary". Autism, 26(2). doi:10.1177/13623613211031403 [Consulter la référence]

P. Durbin-Westby (2016). "'Public Law 109-416 Is Not Just about Scientific Research': Speaking Truth to Power at Interagency Autism Coordinating Committee Meetings". DSQ, 30(1). doi:10.18061/dsq.v30i1.1070

P. Dwyer* (2022). "The Neurodiversity Approach(es): What Are They and What Do They Mean for Researchers?". Human Development, 66(2). doi:10.1159/000523723 [Consulter la référence]

D. Fein, M. Barton, I. Eigsti, E. Kelley, L. Naigles, R. Schultz, M. Stevens, M. Helt, A. Orinstein, M. Rosenthal, E. Troyb, K. Tyson (2013). "Optimal outcome in individuals with a history of autism". Child Psychology Psychiatry, 54(2). doi:10.1111/jcpp.12037

S. Fletcher-Watson, H. McConachie (2017). "The Search for an Early Intervention Outcome Measurement Tool in Autism". Focus Autism Other Dev Disabl, 32(1). doi:10.1177/1088357615583468

K. Gillespie-Lynch, P. Dwyer*, C. Constantino, S. Kapp*, E. Hotez, A. Riccio, D. DeNigris, B. Kofner, E. Endlich (2020). "Can We Broaden the Neurodiversity Movement without Weakening It? Participatory Approaches as a Framework for Cross-disability Alliance Building". Research in Social Science and Disability. doi:10.1108/s1479-354720200000012013

E. Goffman (2009). "Stigma: Notes on the Management of Spoiled Identity".

A. Graber, J. Graber (2023). "Applied Behavior Analysis and the Abolitionist Neurodiversity Critique: An Ethical Analysis". Behav Analysis Practice, 16(4). doi:10.1007/s40617-023-00780-6

J. Higgins*, S. RC Arnold, J. Weise, E. Pellicano, J. Trollor (2021). "Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout". Autism, 25(8). doi:10.1177/13623613211019858

J. Higgins*, S. RC Arnold, J. Weise, E. Pellicano, J. Trollor (2021). "Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout". Autism, 25(8). doi:10.1177/13623613211019858

S. Kapp*, K. Gillespie-Lynch, L. Sherman, T. Hutman (2012). "Deficit, difference, or both? Autism and neurodiversity.". Developmental Psychology, 49(1). doi:10.1037/a0028353

C. Kassari (2019). "How Much Behavioral Therapy Does an Autistic Child Need?". Spectrum Autism Research News. August 27 2019 (Source)

K. Leadbitter, K. Leneh Buckle*, C. Ellis, M. Dekker* (2021). "Autistic Self-Advocacy and the Neurodiversity Movement: Implications for Autism Early Intervention Research and Practice". Front. Psychol., 12. doi:10.3389/fpsyg.2021.635690 [Consulter la référence]

E. Libsack, E. Gavin Keenan, C. Freden, J. Mirmina, N. Iskhakov, D. Krishnathasan, M. Lerner (2021). "A Systematic Review of Passing as Non-autistic in Autism Spectrum Disorder". Clin Child Fam Psychol Rev, 24(4). doi:10.1007/s10567-021-00365-1

L. Anne Livingston, P. Shah, F. Happé (2019). "Compensatory strategies below the behavioural surface in autism: a qualitative study". The Lancet Psychiatry, 6(9). doi:10.1016/s2215-0366(19)30224-x

E. Loth, L. Garrido, J. Ahmad, E. Watson, A. Duff, B. Duchaine (2018). "Facial expression recognition as a candidate marker for autism spectrum disorder: how frequent and severe are deficits?". Molecular Autism, 9(1). doi:10.1186/s13229-018-0187-7

O. Ivar Lovaas (2005). "Behavioral treatment and normal educational and intellectual functioning in young autistic children.". Journal of Consulting and Clinical Psychology, 55(1). doi:10.1037/0022-006x.55.1.3

S. Macari, A. Vernetti, K. Chawarska (2021). "Attend Less, Fear More: Elevated Distress to Social Threat in Toddlers With Autism Spectrum Disorder". Autism Research, 14(5). doi:10.1002/aur.2448

H. McConachie, J. Parr, M. Glod, J. Hanratty, N. Livingstone, I. Oono, S. Robalino, G. Baird, B. Beresford, T. Charman, D. Garland, J. Green/, P. Gringras, G. Jones, J. Law, A. Le Couteur, G. Macdonald, E. McColl, C. Morris, J. Rodgers, E. Simonoff, C. Terwee, K. Williams* (2015). "Systematic review of tools to measure outcomes for young children with autism spectrum disorder". Health Technology Assessment, 19(41). doi:10.3310/hta19410

M. McCoy, E. Liu, A. Lutz, D. Sisti (2020). "Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation". The American Journal of Bioethics, 20(4). doi:10.1080/15265161.2020.1730482

K. McDonald, N. Conroy, R. Olick, I. (2016). "Is It Worth It? Benefits in Research With Adults With Intellectual Disability". Intellectual and Developmental Disabilities, 54(6). doi:10.1352/1934-9556-54.6.440

D. E.M. Milton* (2012). "On the ontological status of autism: the 'double empathy problem'". Disability & Society, 27(6). doi:10.1080/09687599.2012.710008 [Consulter la référence]

D. Milton*, E. Gurbuz, B. López (2022). "The 'double empathy problem': Ten years on". Autism, 26(8). doi:10.1177/13623613221129123 [Consulter la référence]

D. Moreno (1995). "Deciding Together: Bioethics and Moral Consensus".

C. Morris, J. Detrick, S. Peterson (2021). "Participant assent in behavior analytic research: Considerations for participants with autism and developmental disabilities". J of App Behav Analysis, 54(4). doi:10.1002/jaba.859

A. Ne'eman* (2016). "The Future (and the Past) of Autism Advocacy, Or Why the ASA's Magazine, The Advocate, Wouldn't Publish This Piece". DSQ, 30(1). doi:10.18061/dsq.v30i1.1059

A. Ne'eman* (2021). "When Disability Is Defined by Behavior, Outcome Measures Should Not Promote 'Passing'". AMA Journal of Ethics, 23(7). doi:10.1001/amajethics.2021.569 [Consulter la référence]

A. Ne’eman*, K. Albrecht, S. Kapp* (2020). "Obsessive-Compulsive Behaviors in Autism". JAMA, 323(8). doi:10.1001/jama.2019.21991

A. Ne’eman*, E. Pellicano (2022). "Neurodiversity as Politics". Human Development, 66(2). doi:10.1159/000524277

C. Nicolaidis, D. Raymaker*, K. McDonald, S. Dern, E. Ashkenazy*, C. Boisclair, S. Robertson, A. Baggs* (2011). "Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates". cpr, 5(2). doi:10.1353/cpr.2011.0022

U. Provenzani, L. Fusar-Poli, N. Brondino, S. Damiani, M. Vercesi, N. Meyer, M. Rocchetti, P. Politi (2020). "What are we targeting when we treat autism spectrum disorder? A systematic review of 406 clinical trials". Autism, 24(2). doi:10.1177/1362361319854641

D. Raymaker* (2020). "Shifting the System: AASPIRE and the Loom of Science and Activism". Autistic Community and the Neurodiversity Movement. doi:10.1007/978-981-13-8437-0_10

S. Michael Robertson (2016). "Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges". DSQ, 30(1). doi:10.18061/dsq.v30i1.1069

M. Sandbank, K. Bottema-Beutel, S. Crowley, M. Cassidy, J. Feldman, M. Canihuante, T. Woynaroski (2020). "Intervention Effects on Language in Children With Autism: A Project AIM Meta-Analysis". J Speech Lang Hear Res, 63(5). doi:10.1044/2020_jslhr-19-00167

M. Sandbank, K. Bottema-Beutel, T. Woynaroski (2021). "Intervention Recommendations for Children With Autism in Light of a Changing Evidence Base". JAMA Pediatr, 175(4). doi:10.1001/jamapediatrics.2020.4730

D. Trevisan, N. Roberts, C. Lin, E. Birmingham (2017). "How do adults and teens with self-declared Autism Spectrum Disorder experience eye contact? A qualitative analysis of first-hand accounts". PLoS ONE, 12(11). doi:10.1371/journal.pone.0188446

A. Vivian (2012). "Loud Hands: Autistic People Speaking".

D. Wilkenfeld*, A. McCarthy (2020). "Ethical Concerns with Applied Behavior Analysis for Autism Spectrum 'Disorder'". Kennedy Institute of Ethics Journal, 30(1). doi:10.1353/ken.2020.0000

K. Yoshino (2007). "Covering: The Hidden Assault on Our Civil Rights".

J. Yurkovic-Harding, G. Lisandrelli, R. Shaffer, K. Dominick, E. Pedapati, C. Erickson, C. Yu, D. Kennedy (2022). "Children with ASD establish joint attention during free-flowing toy play without face looks". Current Biology, 32(12). doi:10.1016/j.cub.2022.04.044

Synthésiter/Commenter/Traduire cette référence?