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., & van der Miesen, A. I. (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
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
9
Publication authors identified as autistic
3 / 9 (33.3%)
  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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 17:07.

Cited references
39
With a DOI
25
Without a DOI, from raw bibliography text
13
6 / 39 (15.4%) cited references include at least one author identified as autistic.
References with data to complete
11 / 39 (28.2%)
References with detected author names
28 / 39 (71.8%)
Without detected author names
11
Without a structured title
11
Without a stable identifier
12
References with raw author names still to review
11
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
208
From DOI or external metadata
208
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
23
134 / 208 (64.4%) names are linked to an author already present in AutiHub. 74 / 208 (35.6%) names are not yet linked.
Names linked to a person identified as autistic
17 / 208 (8.2%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 17 / 134 (12.7%). Distinct people identified as autistic: 13 / 150 (8.7%).
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