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

Publication date: 1 Dec 2019 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
9
Publication authors identified as autistic
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

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. 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.

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Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
39
Total cited references integrated for this publication.
Cited references with an identified autistic author
6 / 39 (15.4%)
Cited author occurrences identified as autistic
11 / 208 (5.3%)
Among occurrences linked to AutiHub author records: 11 / 129 (8.5%). Distinct cited authors identified as autistic: 9 / 147 (6.1%).
Cited author occurrences linked to AutiHub author records
129 / 208 (62.0%)
Distinct linked cited authors: 73 / 147 (49.7%)
Linked cited-author occurrences not identified as autistic
118 / 129 (91.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 118 / 208 (56.7%). Distinct linked cited authors not identified as autistic: 64 / 73 (87.7%).
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