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, Gender and Autism Program, Center for Neuroscience, Children's National Hospital, Washington, District of Columbia, USA.
Lucy S. McClellan, Gender and Autism Program, Center for Neuroscience, Children's National Hospital, Washington, District of Columbia, USA.
Daphne Raaijmakers, Department of Medical Psychology, Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, Location Vrije Universiteit, Amsterdam, The Netherlands.
Reid Caplan, Brandeis University, Waltham, Massachusetts, USA.
Sascha E. Klomp, Private Consultant, Utrecht, The Netherlands.
Mindy Reutter, Department of Social and Behavioral Sciences, Yale School of Public Health, New Haven, Connecticut, USA.
Meng-Chuan Lai, Child and Youth Mental Health Collaborative at the Centre for Addiction and Mental Health, The Hospital for Sick Children, and Department of Psychiatry, Temerty Faculty of Medicine, University of Toronto, Toronto, Canada.
Minneh Song, Gender and Autism Program, Center for Neuroscience, Children's National Hospital, Washington, District of Columbia, USA.
Finn V. Gratton, Private Consultant, Santa Cruz, California, USA.
Laura K. Dale, Private Consultant, London, United Kingdom.
Anouschka Schutte, Linguistic Consultant, Eindhoven, The Netherlands.
Annelou L. de Vries, Department of Child and Adolescent Psychiatry, Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, Location Vrije Universiteit, Amsterdam, The Netherlands.
Finn Gardiner, Autistic People of Color Fund, Lincoln, Nebraska, USA.
Laura Edwards-Leeper, School of Professional Psychology, Pacific University, Hillsboro, Oregon, USA.
Amélie Lune Minnaard, Private Consultant, Leiden, The Netherlands.
Niki Lou Eleveld, Private Consultant, Nieuwegein, The Netherlands.
Endever Corbin, #AutChat, Portland, Oregon, USA.
Yenn Purkis, Private Consultant, Canberra, Australia.
Wenn Lawson, Department of Disability, Inclusion and Special Needs, University of Birmingham, Edgbaston, Birmingham, United Kingdom.
Da-Young Kim, Brown University, Providence, Rhode Island, USA.
Isa M. van Wieringen, Department of Medical Psychology, Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, Location Vrije Universiteit, Amsterdam, The Netherlands.
Victoria M. Rodríguez-Roldán, GLSEN, New York, New York, USA.
Marvel C. Harris, Private Consultant, Hilversum, The Netherlands.
Madeline F. Wilks, Private Consultant, Bethesda, Maryland, USA.
Gee Abraham, Private Consultant, Eugene, Oregon, USA.
Anouk Balleur-van Rijn, Parnassia Psychiatric Institute, The Hague, The Netherlands.
Lydia X. Brown, Disability Studies Program, Georgetown University, Washington, District of Columbia, USA.
Alexandra Forshaw, Flow Observatorium, Portsmouth, United Kingdom.
Gary B. Wilks, Private Consultant, Bethesda, Maryland, USA.
April Dawn Griffin, Private Consultant, Arborfield, Canada.
Elizabeth K. Graham, The Arc of the United States National Council of Self Advocates, Washington, District of Columbia, USA.
Sandy Krause, Wisconsin Autism Empowerment, Milwaukee, Wisconsin, USA.

Document Type

Journal Article

Publication Date

6-1-2023

Journal

Autism in adulthood : challenges and management

Volume

5

Issue

2

DOI

10.1089/aut.2023.0002

Keywords

adult; autism; autistic; gender diverse; nonbinary; transgender

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 ( = 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: and 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.

Department

Psychiatry and Behavioral Sciences

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