Community-based participatory design for research that impacts the lives of transgender and/or gender-diverse autistic and/or neurodiverse people

John F. Strang, Sascha E. Klomp, Reid Caplan, April D. Griffin, Laura G. Anthony, Marvel C. Harris, Elizabeth K. Graham, Megan Knauss, Anna I. R. van der Miesen

Research output: Contribution to journalComment/Letter to the editorAcademic

Abstract

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.
Original languageEnglish
Pages (from-to)396-404
JournalClinical Practice in Pediatric Psychology
Volume7
Issue number4
DOIs
Publication statusPublished - 2019

Cite this