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. 2019 Dec;7(4):396-404.
doi: 10.1037/cpp0000310.

Community-Based Participatory Design for Research that Impacts the Lives of Transgender and/or Gender-Diverse Autistic and/or Neurodiverse People

John F Strang  1   2 , Sascha E Klomp  3 , Reid Caplan  4 , April D Griffin  5 , Laura G Anthony  6   7 , Marvel C Harris  8 , Elizabeth K Graham  9   10 , Megan Knauss  1   11 , Anna I R van der Miesen  12
Affiliations

Community-Based Participatory Design for Research that Impacts the Lives of Transgender and/or Gender-Diverse Autistic and/or Neurodiverse People

John F Strang et al. Clin Pract Pediatr Psychol. 2019 Dec.

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.

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Conflict of interest statement

Conflicts of Interest: The authors declare that they have no conflicts of interest.

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