TY - JOUR
T1 - Community-based participatory design for research that impacts the lives of transgender and/or gender-diverse autistic and/or neurodiverse people
AU - Strang, John F.
AU - Klomp, Sascha E.
AU - Caplan, Reid
AU - Griffin, April D.
AU - Anthony, Laura G.
AU - Harris, Marvel C.
AU - Graham, Elizabeth K.
AU - Knauss, Megan
AU - van der Miesen, Anna I. R.
PY - 2019
Y1 - 2019
N2 - 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.
AB - 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.
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85076711624&origin=inward
U2 - https://doi.org/10.1037/cpp0000310
DO - https://doi.org/10.1037/cpp0000310
M3 - Comment/Letter to the editor
SN - 2169-4826
VL - 7
SP - 396
EP - 404
JO - Clinical Practice in Pediatric Psychology
JF - Clinical Practice in Pediatric Psychology
IS - 4
ER -