Conception participative communautaire pour une recherche ayant un impact sur la vie des personnes autistes et/ou neurodiverses transgenres et/ou de genre divers

Titre original en anglais : Community-Based Participatory Design for Research That Impacts the Lives of Transgender and/or Gender-Diverse Autistic and/or Neurodiverse People

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Strang, J. F., Klomp, S. E., Caplan, R., Griffin, A. D., Anthony, L. G., Harris, M. C., Graham, E. K., Knauss, M., & Miesen, A. I. R. v. d. (2019). Community-Based Participatory Design for Research That Impacts the Lives of Transgender and/or Gender-Diverse Autistic and/or Neurodiverse People. Clinical Practice in Pediatric Psychology, 7(4), 396-404. https://doi.org/10.1037/cpp0000310

Date de publication: 01/12/2019 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
9
Auteur·ices de la publication identifié·es comme autistes
1 / 9 (11,1 %)
  1. John F. Strang
  2. Sascha E. Klomp
  3. Reid Caplan *
  4. April Dawn Griffin
  5. Laura G. Anthony
  1. Marvel C. Harris
  2. Elizabeth K. Graham
  3. Megan Knauss
  4. Anna I. R. van der Miesen

Résumé

Objectif : Les recherches portant sur la cooccurrence de l’autisme (et/ou de la neurodiversité) et de la diversité de genre (A/ND-GD) ont été menées en grande partie sans les perspectives et les voix de la communauté A/ND-GD. L’inclusion de défenseurs communautaires A/ND-GD en tant que partenaires de recherche pourrait constituer une étape suivante essentielle pour faire progresser les initiatives de recherche sur cette cooccurrence, compte tenu de la complexité et de l’altérité apparentes de l’expérience A/ND-GD. Méthode : Conformément au modèle de recherche participative communautaire (CBPR) que nous proposons ici, notre équipe d’auteurs comprend un partenariat entre des chercheurs cliniciens et divers collaborateurs communautaires A/ND-GD. De multiples facettes de l’expérience vécue A/ND-GD sont examinées, notamment au moyen de récits fournis par nos partenaires communautaires A/ND-GD. Résultats : Sur la base de notre expérience de la conduite de recherches liées à A/ND-GD et de notre expérience vécue en tant qu’autoreprésentants A/ND-GD, nous mettons en évidence les difficultés de ce domaine de recherche, y compris les risques liés à la conduite d’études sans la participation de la communauté A/ND-GD. Étant donné que de nombreux jeunes A/ND-GD présentent une urgence liée au genre durant l’adolescence, nous fournissons un cadre développemental expliquant comment les méthodes éclairées par la CBPR peuvent enrichir notre compréhension des besoins de soins de ces jeunes et contextualiser l’hétérogénéité apparente de leurs besoins et trajectoires de genre au fil du temps. Conclusions : L’intégration de méthodologies CBPR dans les initiatives de recherche A/ND-GD peut optimiser la pertinence des questions de recherche posées ainsi que l’interprétation et la contextualisation des résultats des études. Implications pour l’énoncé d’impact : Les perspectives et les priorités de la communauté autiste et/ou neurodiverse transgenre et/ou de genre divers doivent être prises en compte lors de la conduite de recherches ayant un impact sur les personnes autistes/neurodiverses transgenres/de genre divers. Le recours à des conceptions participatives communautaires pour les études sur cette cooccurrence contribuera à aligner les programmes de recherche sur les besoins de la communauté et à contextualiser de manière appropriée les résultats de recherche.

Objective: Research addressing the co-occurrence of autism (and/or neurodiversity) and gender-diversity (A/ND-GD) has been conducted largely without the perspectives and voices of the A/ND-GD community. Including A/ND-GD community advocates as research partners may be a critical next step for advancing research initiatives on the co-occurrence given the apparent complexity and alterity of the A/ND-GD experience. Method: Consistent with the community-based participatory research (CBPR) model we propose herein, our authorship team includes a partnership between clinician researchers and diverse A/ND-GD community collaborators. Multiple facets of the A/ND-GD lived experience are examined, including through narratives provided by our A/ND-GD community partners. Results: Based on our experience conducting A/ND-GD-related research and our lived experience as A/ND-GD self-advocates, we highlight challenges in this line of research, including risks of conducting studies without the involvement of the A/ND-GD community. And given that many A/ND-GD youth present with gender-related urgency during the teen years, we provide a developmental framework for how CBPR-informed methods may enrich our understanding of the care needs of these young people and provide context for the apparent heterogeneity in their gender needs and trajectories over time. Conclusions: Integrating CBPR methodologies in A/ND-GD research initiatives has the potential to optimize the relevance of the research questions asked and the interpretation and contextualization of study findings. Implications for Impact Statement The perspectives and priorities of the autistic and/or neurodiverse transgender and/or gender-diverse community need to be considered when conducting research that impacts autistic/neurodiverse transgender/gender-diverse individuals. Employing community-based participatory designs for studies of this co-occurrence will help to align research agendas with community needs and appropriately contextualize research findings.

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 11:30.

Références citées
39
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
6 / 39 (15,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
11 / 208 (5,3 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 11 / 129 (8,5 %). Auteurices cité·es distinct·es identifié·es comme autistes : 9 / 147 (6,1 %).
Occurrences citées rattachées à la base AutiHub
129 / 208 (62,0 %)
Auteurices cité·es distinct·es rattaché·es : 73 / 147 (49,7 %)
Occurrences rattachées, non identifiées comme autistes
118 / 129 (91,5 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 118 / 208 (56,7 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 64 / 73 (87,7 %).
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