The Gender-Diversity and Autism Questionnaire: a community-developed clinical, research, and self-advocacy tool for autistic transgender and gender-diverse young adults

John F. Strang, Lucy S. McClellan, Daphne Raaijmakers, Reid Caplan, Sascha E. Klomp, Mindy Reutter, Meng Chuan Lai, Minneh Song, Finn V. Gratton, Laura K. Dale, Anouschka Schutte, Annelou L. C. de Vries, Finn Gardiner, Laura Edwards-Leeper, Amélie Lune Minnaard, Niki Lou Eleveld, Endever Corbin, Yenn Purkis, Wenn Lawson, Da Young KimIsa M. van Wieringen, Victoria M. Rodríguez-Roldán, Marvel C. Harris, Madeline F. Wilks, Gee Abraham, Anouk Balleur-Van Rijn, Lydia X. Z. Brown, Alexandra Forshaw, Gary B. Wilks, April Dawn Griffin, Elizabeth K. Graham, Sandy Krause, Noor Pervez, Inge A. Bok, Amber Song, Abigail L. Fischbach, Anna I. R. van der Miesen

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)

Abstract

Background: Autistic transgender people face unique risks in society, including inequities in accessing needed care and related mental health disparities. Given the need for specific and culturally responsive accommodations/supports, the characterization of key experiences, challenges, needs, and resilience factors within this population is imperative. This study developed a structured self-report tool for autistic transgender young adults to communicate their experiences and needs in a report format attuned to common autistic thinking and communication styles. Methods: This cross-nation project developed and refined the Gender-Diversity and Autism Questionnaire through an iterative community-based approach using Delphi panel methodology. This proof-of-principle project defined ‘‘expertise’’ broadly, employing a multi-input expert search approach to balance academic-, community-, and lived experience-based expertise. Results: The expert collaborators (N = 24 respondents) completed a two-round Delphi study, which developed 85 mostly closed-ended items based on 90% consensus. Final item content falls within six topic areas: the experience of identities; the impact of experienced or anticipated discrimination, bias, and violence toward autistic people and transgender people; tasks and experiences of everyday life; gender diversity- or autism-related care needs and history; the experience of others doubting an individual’s gender identity and/or autism; and the experience of community and connectedness. The majority of retained items relate to tasks and experiences of everyday life or the impact of experienced or anticipated discrimination, bias, and violence. Conclusions: This study employed a multipronged multimodal search approach to maximize equity in representation of the expert measure development team. The resulting instrument, designed for clinical, research, and self-advocacy applications, has parallel Dutch and English versions and is available for immediate use. Future cross-cultural research with this instrument could help identify contextual risk and resilience factors to better understand and address inequities faced by this large intersectional population.

Original languageEnglish
Pages (from-to)175-190
Number of pages16
JournalAutism in Adulthood
Volume5
Issue number2
DOIs
Publication statusPublished - 13 Jun 2023

Bibliographical note

Funding Information:
This work was supported by an Organization for Autism Research Applied Research Award: “Autistic Transgender and Gender-Diverse Adults” (Multiple Principal Investigators: A.I.R.v.d.M.; J.F.S.; M.-C.L.). This research was also supported by the Clinical and Translational Science Institute, Children's National (UL1TR001876) and the National Institutes of Health Clinical and Translational Science Award (KL2TR001877, J.F.S.). *

Funding Information:
This work was supported by an Organization for Autism Research Applied Research Award: ‘‘Autistic Transgender and Gender-Diverse Adults’’ (Multiple Principal Investigators: A.I.R.v.d.M.; J.F.S.; M.-C.L.). This research was also supported by the Clinical and Translational Science Institute, Children’s National (UL1TR001876) and the National Institutes of Health Clinical and Translational Science Award (KL2TR001877, J.F.S.).

Publisher Copyright:
© Mary Ann Liebert, Inc.

Keywords

  • adult
  • autism
  • autistic
  • gender diverse
  • nonbinary
  • transgender

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