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 LC de Vries; Finn Gardiner; Laura Edwards-Leeper; Amélie Lune Minnaard; Niki Lou Eleveld; endever* Corbin; Yenn Purkis; Wenn Lawson; Da-Young Kim; Isa M van Wieringen; Victoria M Rodríguez-Roldán; Marvel C Harris; Madeline F Wilks; Gee Abraham; Anouk Balleur-van Rijn; Lydia XZ 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 IR van der Miesen

doi:10.1089/aut.2023.0002

. 2023 Jun 13;5(2):175–190. doi: 10.1089/aut.2023.0002

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 ^1,^2,^✉, Lucy S McClellan ¹, Daphne Raaijmakers ^3,⁴, Reid Caplan ⁵, Sascha E Klomp ⁶, Mindy Reutter ⁷, Meng-Chuan Lai ^8,^9,¹⁰, Minneh Song ¹, Finn V Gratton ¹¹, Laura K Dale ¹², Anouschka Schutte ¹³, Annelou LC de Vries ⁴, Finn Gardiner ¹⁴, Laura Edwards-Leeper ¹⁵, Amélie Lune Minnaard ¹⁶, Niki Lou Eleveld ¹⁷, endever* Corbin ¹⁸, Yenn Purkis ¹⁹, Wenn Lawson ^20,^21,²², Da-Young Kim ²³, Isa M van Wieringen ^3,^24,²⁵, Victoria M Rodríguez-Roldán ²⁶, Marvel C Harris ²⁷, Madeline F Wilks ²⁸, Gee Abraham ²⁹, Anouk Balleur-van Rijn ³⁰, Lydia XZ Brown ^31,³², Alexandra Forshaw ³³, Gary B Wilks ²⁸, April Dawn Griffin ³⁴, Elizabeth K Graham ³⁵, Sandy Krause ³⁶, Noor Pervez ³⁷, Inge A Bok ³⁸, Amber Song ¹, Abigail L Fischbach ¹, Anna IR van der Miesen ⁴

^¹Gender and Autism Program, Center for Neuroscience, Children's National Hospital, Washington, District of Columbia, USA.

^²Departments of Pediatrics, Psychiatry and Behavioral Sciences, George Washington University School of Medicine, Washington, District of Columbia, USA.

^³Department of Medical Psychology, Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, Location Vrije Universiteit, Amsterdam, The Netherlands.

^⁴Department of Child and Adolescent Psychiatry, Center of Expertise on Gender Dysphoria, Amsterdam University Medical Centers, Location Vrije Universiteit, Amsterdam, The Netherlands.

^⁵Brandeis University, Waltham, Massachusetts, USA.

^⁶Private Consultant, Utrecht, The Netherlands.

^⁷Department of Social and Behavioral Sciences, Yale School of Public Health, New Haven, Connecticut, USA.

^⁸Child 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.

^⁹Autism Research Centre, Department of Psychiatry, University of Cambridge, Cambridge, United Kingdom.

^¹⁰Department of Psychiatry, National Taiwan University Hospital and College of Medicine, Taipei, Taiwan.

^¹¹Private Consultant, Santa Cruz, California, USA.

^¹²Private Consultant, London, United Kingdom.

^¹³Linguistic Consultant, Eindhoven, The Netherlands.

^¹⁴Autistic People of Color Fund, Lincoln, Nebraska, USA.

^¹⁵School of Professional Psychology, Pacific University, Hillsboro, Oregon, USA.

^¹⁶Private Consultant, Leiden, The Netherlands.

^¹⁷Private Consultant, Nieuwegein, The Netherlands.

^¹⁸#AutChat, Portland, Oregon, USA.

^¹⁹Private Consultant, Canberra, Australia.

^²⁰Department of Disability, Inclusion and Special Needs, University of Birmingham, Edgbaston, Birmingham, United Kingdom.

^²¹Macquarie University, Sydney, Australia.

^²²Curtin Autism Research Group, Curtin University, Perth, Australia.

^²³Brown University, Providence, Rhode Island, USA.

^²⁴Department of Clinical Psychology, University of Amsterdam, Amsterdam, The Netherlands.

^²⁵Department of Developmental Psychology, University of Amsterdam, Amsterdam, The Netherlands.

^²⁶GLSEN, New York, New York, USA.

^²⁷Private Consultant, Hilversum, The Netherlands.

^²⁸Private Consultant, Bethesda, Maryland, USA.

^²⁹Private Consultant, Eugene, Oregon, USA.

^³⁰Parnassia Psychiatric Institute, The Hague, The Netherlands.

^³¹Disability Studies Program, Georgetown University, Washington, District of Columbia, USA.

^³²Autistic Women & Nonbinary Network, Lincoln, Nebraska, USA.

^³³Flow Observatorium, Portsmouth, United Kingdom.

^³⁴Private Consultant, Arborfield, Canada.

^³⁵The Arc of the United States National Council of Self Advocates, Washington, District of Columbia, USA.

^³⁶Wisconsin Autism Empowerment, Milwaukee, Wisconsin, USA.

^³⁷Autistic Self-Advocacy Network, Washington, District of Columbia, USA.

^³⁸Private Consultant, Amsterdam, The Netherlands.

^✉

Address correspondence to: John F. Strang, PsyD, Gender and Autism Program, Children's National Hospital, 15245 Shady Grove Road Suite 350, Rockville, MD 20850, USA jstrang@childrensnational.org

ⁱORCID ID (https://orcid.org/0000-0002-0950-6177).

PMCID: PMC10280183 PMID: 37346994

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.

Keywords: autism, autistic, adult, gender diverse, transgender, nonbinary

Community brief

Why is this an important issue?

Transgender and gender-diverse are words used to describe people whose gender varies from their assigned sex at birth. Many autistic people identify as being transgender/gender-diverse. Autistic gender-diverse/transgender young adults often describe difficulties getting the care they need, which can increase their chances of experiencing stress and mental health challenges. This study created a self-report questionnaire for autistic transgender/gender-diverse young adults to share about their health care, support needs, and broader experiences.

What were the results of the study?

A diverse group of experts in the autism and gender diversity co-occurrence, including autistic transgender people, worked together to develop the questionnaire. The researchers found experts by searching the internet and talking to people in the community and research field. The questionnaire is called the Gender-Diversity and Autism Questionnaire and has 85 questions that are grouped into 6 different 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 questionnaire has English and Dutch versions so it can be used for research in different countries.

What do the authors recommend for future research on this topic?

Researchers are currently using the new questionnaire to compare the experiences and needs of autistic transgender young adults in the Netherlands and the United States. The results may help explain why some outcomes are different between autistic transgender young people in the two countries and how culture and society play a role.

How will these findings help autistic adults now or in the future?

We created the questionnaire to be used in different settings, including clinics and in research. The questionnaire gives autistic transgender young adults a structured way to communicate their experiences, needs, challenges, and areas of strength. The answers that an autistic transgender young adult gives on the questionnaire could help other people understand the clinical and community supports that the young adult wants and needs. Future studies may use the questionnaire to understand obstacles that autistic transgender young adults may face.

Introduction

The intersection of autism and gender diversity^* is common (i.e., ∼11% of gender-diverse people are autistic²). Initial qualitative evidence suggests substantial overlap in the gender-related experiences and needs of autistic transgender and non-autistic transgender people (e.g., regarding social gender transition and gender-affirming medical care).³ However, studies of autistic transgender people have also described a subset of experiences, challenges, needs, and resilience factors that may be specific to the intersection of autism and gender diversity.^3–6 For example, some autistic transgender people describe experiences of their gender identities being questioned or denied due to being autistic.³ Notably, most studies involving autistic transgender people have been conducted with samples that are disproportionately White in their ethnoracial distributions.

Furthermore, the impact of executive function and related barriers to navigating gender care systems and gender affirmation processes (e.g., social and/or medical transition) is a primary challenge reported by autistic transgender people³ and is also highly predictive of increased mental health risks.^4,7 Characteristics of the intersection of autism and gender diversity have also been highlighted as resilience factors, such as in community accounts.⁸ For example, Martine Stonehouse, an autistic transgender woman and advocate, has described how her internationally recognized advocacy for transgender medical rights in Canada was aided by her autistic persistence.⁹ Furthermore, some autistic people have reported that traits related to autism have allowed them greater freedom in understanding and expressing their gender.¹⁰

Given the risks experienced by this intersectional population (e.g., difficulties accessing needed gender-affirming care; mental health risks),^11–13 the need for attuned resources and support systems to reduce these risks and promote optimal outcomes,¹⁴ and the yet to be well-characterized strengths and resilience intrinsic to this intersection, characterization of key experiences, challenges, needs, and resilience factors is imperative. Yet, autistic transgender people commonly report challenges in being heard and understood when expressing their gender- and autism-related needs.^3,5,8 Currently, no measures exist to support communication and self-advocacy among young adults at the intersection of gender diversity and autism. A structured self-report tool could enhance self-advocacy in a format attuned to common autistic thinking and communication styles.

Therefore, this study aimed to develop a self-assessment/self-advocacy tool (i.e., the Gender-Diversity and Autism Questionnaire) for autistic gender-diverse young adults to express their experiences, unmet needs, stressors, and resilience. We designed the questionnaire to have two primary applications: (1) as a self-assessment and self-advocacy tool for autistic transgender young adults in clinical and community settings and (2) as a multinational research tool (i.e., currently for English- and Dutch-speaking countries) to understand the varying needs and experiences of people at the intersection of autism and gender diversity across a range of settings (e.g., countries, regions, clinic vs. community). We developed the new assessment tool specifically for autistic gender-diverse young adults (ages 18–35 years), given the dearth of clinical research with this age group and the need for assessments specifically attuned to young adulthood.^2–4 Future research endeavors will be needed to develop measures responsive to the specific needs of individuals in middle and later adulthood.

This study developed and refined the Gender-Diversity and Autism Questionnaire (in Dutch, de Vragenlijst Genderdiversiteit en Autisme) through an iterative community-based approach. Community-based methodologies promote collaboration between researchers and community partners to produce desirable outcomes for the community.¹⁵ This study's community-based approach included the following sequence of research activities: (1) a novel, semi-structured iterative approach for identifying a broadly representative, multidisciplinary, blended community and academic expert panel to describe and categorize key experiences, unmet needs, stressors, and resilience factors among autistic transgender young adults; (2) a pilot itemset developed to capture the expert panel priority areas using a Delphi method; (3) itemset refinement by the expert panel and investigator team; and (4) simultaneous finalization of the itemset wording in Dutch and English, such that phrases problematic for Dutch translation could be reconciled through adjustments in the English version.

This community-based research initiative was novel in three ways:

1.
The study developed and refined the first self-report/self-advocacy tool for autistic gender-diverse young adults targeting the specific needs, risks, and resilience factors of this population.
2.
This study included as part of the team autistic transgender investigators, in line with recent calls to make research more attuned and pertinent to the community.⁸
3.
Finally, the study blended Delphi panel and community-based approaches for the development of the instrument. The Delphi process aims to achieve expert consensus in a specific area of inquiry.^16,17 Traditionally, researchers have staffed Delphi consensus studies with leading “academic” experts,^18–20 but recent initiatives have sought to define expertise more broadly (e.g., experts with lived and/or community-based experience).²¹ This proof-of-principle project takes the broader definition of “expertise” and employs a multipronged multi-input search process for identifying experts. The research team conducted systematic searches of various nonacademic internet platforms to avoid overreliance on the researchers' existing contacts and established networks. Our method was informed by cyclical iterative principles of community-based research, including a community-based emphasis on positive and ecological perspectives of health (e.g., highlighting resilience factors and understanding well-being holistically through a broad social, psychological, and physical framework).²² However, unlike typical community-based research and its use of synchronous face-to-face collaboration, this study's Delphi process employed asynchronous anonymous rounds of expert input.

Methods

Three multiple principal investigators (MPIs)—J.F.S., A.I.R.v.d.M., and M.-C.L.—who are, collectively, highly experienced in clinical and community research with autistic transgender individuals,^3,7,8,14 led this study. Two young adult autistic transgender coinvestigators—S.E.K. and R.C.—have made research and community-based contributions to the autistic transgender community and brought to the project their life experience of being autistic and gender-diverse.^7,8,14,23,24 The broader staff for the project included a research coordinator in the United States (A.So.) and a research coordinator in the Netherlands (D.R.), as well as a study cataloger (D.-Y.K.) who performed systematic web searches to identify candidate experts to colead the study.

The eight study personnel reported the following overlapping identities and life experiences: gender-diverse (n = 3); gender-exploring/-expansive/-queer (n = 2); cisgender (n = 3); woman (n = 4); man (n = 3); agender (n = 1); autistic (n = 2); neurodivergent, broadly (n = 3); Taiwanese (n = 1); Asian American (n = 1); Korean American (n = 1); Person of Color (n = 1); White (n = 4); young adult (n = 6). Note: each study member specified their own ethnoracial identities and self-descriptions (e.g., Person of Color). The countries of residence of the eight investigators are as follows: The Netherlands (n = 3); Canada (n = 1); United States (n = 4). Two of the MPIs (J.F.S., A.I.R.v.d.M.) initiated this study. Soon after this study was funded, the five primary investigators (J.F.S., A.I.R.v.d.M., M.-C.L., S.E.K., R.C.) worked together to plan the study protocol.

Identification of expert Delphi panel

The method of identifying community-based experts is not well established in clinical research fields.^25,26 This is particularly true for experts in the intersection of autism and gender diversity. Research related to autistic transgender young adults is just beginning to emerge, and experts in this common intersection may experience barriers to recognition due to the lack of clinical, community-, and research-related infrastructures for autistic transgender young adults. In an effort to move beyond traditional invitation approaches for community-based collaborators and Delphi panels (e.g., invitations based on who is “known” in the field or known to the investigator team), this study took a multifaceted approach to identifying experts.

The study team sought experts based on the following criteria: (1) individuals who produced original and relevant thought products and/or content on the autism/gender diversity intersection and/or (2) individuals who possessed substantial personal, community, and/or professional expertise in supporting autistic gender-diverse people. Importantly, the search for Delphi experts was limited to those who could work in English, given its widespread use in the United States and the Netherlands. Figure 1 depicts the multimodal, three-phase expert identification process, described in the text that follows.

FIG. 1. — Expert identification process.

Phase 1: initial list of candidate experts identified

In Phase 1, the study cataloger (D.-Y.K.) conducted extensive online searches of existing public information using the following search terms: autistic trans, autism trans, autistic transgender, autism transgender, autistic nonbinary, and autism nonbinary. The team considered and explored additional search terms (i.e., enby, NB), which were not ultimately implemented—most of the hits using these terms were unrelated to gender and would have produced few appropriate results for the amount of time dedicated to those searches.

To identify a wide range of community-based contributors, the cataloger searched the terms described above on each of the four internet platforms: Twitter, Facebook Pages, Web pages (DuckDuckGo), and Web video (DuckDuckGo). We selected DuckDuckGo as the primary internet search engine because it orders search results by the total number of hits across all users without employing a local user's personal information.²⁷ Therefore, using DuckDuckGo mitigates the risk that individual users' personalized search settings might order and bias the search results (also known as the “filter bubble”).

The search was not exhaustive but instead consisted of a total search time of 28 hours evenly distributed across the four platforms (i.e., seven hours per platform). The internet cataloger reviewed each finding for up to five minutes, allowing an additional five minutes for relevant sublinks within the web page or posting. The cataloger also noted key details from each public posting/page, including: the candidate expert's name, primary themes of any relevant thought contributions (e.g., blog post content), and publicly shared demographics (e.g., gender, autistic identity), whenever available.

In addition to the online searches, two of the MPIs (J.F.S., A.I.R.v.d.M.) generated lists of potential experts based on existing knowledge and networks. Finally, the two autistic transgender coinvestigators—one of whom has served at a national advocacy level (R.C.) and the other at a community level (S.E.K.)—also generated lists of potential experts known to them through their professional and personal networks.

Candidate experts identified from online searches (n = 78), from the two MPI experts in the co-occurrence (A.I.R.v.d.M., J.F.S.; n = 26), and from the autistic transgender coinvestigators (R.C., S.E.K.; n = 29) were organized according to three groupings: candidate experts who are autistic transgender/gender-diverse (n = 66), candidate experts who serve autistic transgender/gender-diverse communities professionally or through advocacy (i.e., “contributor/provider experts”; n = 49), and candidate experts who are autistic transgender and serve the autistic transgender/gender-diverse communities professionally or through advocacy (n = 8). The cataloger identified and removed ten duplicate candidate experts, leading to a total list of 123 potential experts.

Phase 2: initial reduction of candidate experts list

In Phase 2, to reduce the list of candidate experts to a reasonable number for ranking by the larger team per the request of the autistic transgender coinvestigators, the cataloger assigned an initial rating to each candidate expert's contributions: 0 = minimal contribution to understanding the needs of autistic transgender/gender-diverse adults; 1 = moderate contribution to understanding the needs of autistic transgender/gender-diverse adults; 2 = exceptional contribution to understanding the needs of autistic transgender/gender-diverse adults. This rating system was developed by the MPIs and adjusted based on coinvestigator input.

One of the MPIs (J.F.S.) then assigned ratings in the same manner, independently, and differences of ratings between the cataloger and MPI were discussed until consensus was achieved. Candidate experts who identify as autistic transgender/gender-diverse (including those who serve the autistic transgender community professionally or through advocacy) were maintained if they achieved a score of 1 or 2. The other potential experts were maintained if they achieved a score of 2. We set this lower threshold for autistic transgender/gender-diverse experts, given our commitment to prioritizing the perspectives of autistic transgender/gender-diverse experts themselves. From the original list of 123 potential experts, we retained 48, and 75 were excluded based on this ranking.

Phase 3: ranking of autistic transgender and contributor/provider candidate experts

Phase 3 of the expert identification process consisted of two separate ranking procedures. First, the two autistic transgender coinvestigators and an MPI (A.I.R.v.d.M.) uninvolved in the initial ratings of the 123 experts rated the top 30 of the 48 total autistic transgender candidate expert finalists; the MPIs and autistic transgender coinvestigators codeveloped the rating system. The two autistic transgender coinvestigators (R.C., S.E.K.) also reviewed the initial lists they provided to the cataloger and selected any experts not included in the final list of 30 who they felt would be important expert contributors. The team did this, understanding that thought contributions might not be available online or published in other ways and that the lived experience of interacting with autistic transgender expert contributors should be valued equally to public or published contributions.

After the reintroduction of two autistic transgender/gender-diverse candidate experts by the autistic transgender coinvestigators, the final list included 32 experts who are autistic and transgender. The two candidate experts were excluded originally because little information was available about them and their contributions from the online searches. The autistic transgender coinvestigators knew of their contributions from community-based experiences that were not available online.

The cataloger then presented a brief summary of relevant thought contributions of each candidate expert. The rating system for each potential expert was as follows: “How much can this person help us understand the lived experience of autistic trans young adults?” with rating options of: 1 = less helpful; 2 = helpful; 3 = extremely helpful. To establish anchors for the ratings and understand the system, the three raters (R.C., S.E.K., A.I.R.v.d.M.) practiced rating five candidate experts selected to represent a range of experiences and identities. Then, the three raters provided ratings for all 32 autistic transgender candidate experts and summed these scores to identify the ranking for invitations to the expert team: The highest rating sums were prioritized for invitations.

Finally, the two MPIs (A.I.R.v.d.M., M-C.L.) uninvolved in the initial ratings of the 123 candidate experts employed a parallel process for the experts who serve autistic transgender/gender-diverse communities professionally or through advocacy, but who are not autistic and transgender themselves; a total of 18 individuals made it to this point in the rating process. Again, the study team summed the rating scores to identify the rankings for invitations to the expert team.

Plan for proportional representation within the expert panel

The Delphi method is an iterative consensus-building approach that facilitates experts in a field working together without the limitations of in vivo work group meetings (e.g., deference to certain personalities, over-adherence to specific ideas).²⁸ The Delphi method employed within this study included two rounds, each of which was completed asynchronously and anonymously by each of the expert panelists. The target size of the Delphi panel was N = 24, given established sample size recommendations for Delphi studies^29–31 and our team's experience with a Delphi-based measure-development initiative with autistic Delphi experts.³²

In response to members of autistic communities advocating for attuned accommodations to support autistic people's participation in research,³³ our previous work has demonstrated that autistic panelists felt sufficiently comfortable to participate as part of an expert Delphi panel of this size.¹⁴ Although a larger panel would have been possible based on the number of identified potential expert candidates, we focused on 24 expert invitations, repeating our previously successful approach while meeting recommended sample size requirements for Delphi studies.^29–31

We developed a purposive plan for inviting experts to maximize representation across type of expertise, gender, and relationship to the autistic transgender community (Fig. 2). An initial parameter for the purposive invitations was that two-thirds of the experts be both autistic and transgender/gender-diverse to center this research on lived experiences. The autistic transgender category was not exclusive, as many of the contributors and/or clinical or community providers were also autistic and transgender. Within the group of autistic transgender experts, an additional parameter was that genders would be diversified, and transfeminine identities would be proportionally overrecruited to counterbalance the lack of autistic transfeminine investigators on the study team. Two of the MPIs (J.F.S., A.I.R.v.d.M.) made the decision to include diverse family members of autistic transgender people (including partners and parents); this decision was made in the early stages of the study.

FIG. 2. — Purposive plan for representation within the Delphi panel.

The sequence of total score ratings by the two autistic transgender coinvestigators and one MPI (A.I.R.v.d.M.) determined the final parameter for panel invitations. Whenever there were ties in scores, the order of ranking prioritized the scores of Black, Indigenous, and People of Color (BIPOC) experts to promote more equitable representation within the panel. Finally, the research leadership team made personal invitations (n = 4) to family members of autistic transgender young adults (ages 18–35 years), who possessed a range of expert knowledge on the experiences of this community. These personal invitations were made as it was assumed that it would be difficult to identify family members of autistic transgender young adults through their online presence.

Overall, this purposive invitation approach supported an invitation order to weight the lived experience of being autistic and transgender and to maximize BIPOC perspectives. An additional consideration emerged during the invitations: Although the measure was developed within the United States and the Netherlands contexts in particular, a broader representation of English-speaking experts from other countries with English as a primary language (i.e., Canada, United Kingdom, Australia) was also included, allowing for perspectives beyond the United States and the Netherlands.

Of the initial 24 invitations, 20 experts agreed to serve as collaborators, whereas four did not. Following the ranking of experts and the purposive invitation algorithm, four additional experts were invited and agreed to collaborate. Table 1 presents the characteristics of the 24 collaborators. Twenty-five individuals are listed within the table, as one set of parents worked together on the Delphi responses as a single response “unit.”

Table 1.

Characteristics of Experts: Nationality, Age, Race/Ethnicity, Gender, and Relationship to the Autistic Transgender Community

	Country of residence			Expert grouping
	United States (n = 14)	Australia, United Kingdom, Canada (n = 5)	The Netherlands (n = 6)	Autistic transgender experts (n = 16)	Other experts (n = 9)	Total (N = 25)
Age, years
Mean	41.5	47	38	36.94	50.33	35.58
SD	13.11	13.87	15.21	13.15	9.72	13.51
Range	25–60	29–68	21–58	21–68	30–58	21–68
Race/ethnicity^a
Asian/East Asian	3	0	0	3	0	3
Black	1	0	0	1	0	1
Biracial/multiracial	1	1	1	3	0	3
White	8^b	4	5	8	9	17
Latina/o/e	1	0	0	1	0	1
Primary reported gender
Nonbinary^c	5	1	1	7	0	7
Genderqueer	0	0	1	1	0	1
Transgender female/transfeminine	3	2	0	5	0	5
Transgender male/transmasculine	1	1	0	2	0	2
Formerly transgender male, currently “tomboy female”	0	1	0	1	0	1
Femme nonconforming	0	0	1	0	1	1
Cisgender female	4	0	3	0	7	7
Cisgender male	1	0	0	0	1	1
Relationship(s) to autistic gender-diverse community
Autistic transgender experts	6	3	2	11	0	11
Contributor/provider experts	1	0	2	0	3	3
Autistic transgender contributor/provider experts	3	2	0	5	0	5
Family members of autistic transgender people^d	4	0	2	0	6	6

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A married couple (two parents) worked together to provide their collective perspectives as a single respondent. For this table, they are reported on separately.

^{^a}

Although distinctions between race and ethnicity are common in the United States, not all respondents conceptualize their ethnoracial identities according to separate race and ethnicity. Furthermore, race versus ethnicity distinctions are uncommon in the Netherlands. Therefore, the ethnoracial self-descriptions are presented as a single list within this table.

^{^b}

Two of the White-identified panelists (the aforementioned married couple) worked together as a single reporting unit.

^{^c}

Some experts reported identifying as nonbinary as an umbrella term along with a more specific gender identity. More specific gender identities among these experts included agender, trans, gender punk, contrabinary, jogappa, and nonbinary transmasculine.

^{^d}

None of the family members of autistic transgender people were themselves autistic.

Iterative Delphi measure development process

Round 1 of the Delphi presented the expert panel with a prompt asking for the key topics, challenges, strengths, and risks for autistic transgender young adults. We invited the experts to provide five to ten open-ended responses, which were then organized into primary themes and converted into draft questions for the questionnaire. Round 2 of the Delphi had experts rate each question as “necessary” or “not necessary” for the questionnaire. Experts were also provided opportunities to offer additional qualitative feedback to guide the revision of the questionnaire. Consensus analytics were as follows.

We retained an item if there was 90% expert agreement for the inclusion of the item. So as not to lose the experiences and perspectives of BIPOC panelists in the diffuseness of the larger panel, we also applied the 90% consensus algorithm to the BIPOC panelist ratings alone. We included any items not retained by the larger group but retained by the BIPOC expert ratings. Finally, to center the experiences and perspectives of autistic transgender panelists, the autistic transgender panelist ratings alone also underwent the 90% consensus algorithm. We included any items not retained by the larger panel but retained by the autistic transgender expert ratings.

The autistic transgender coinvestigators reviewed and revised the resulting 85 items (along with eight demographic items) for comprehensibility and appropriateness for autistic respondents. Following this revision, a health care-specialized English–Dutch translator with experience translating instruments for autistic people (coauthor A.Sc.) then translated the English version of the questionnaire into Dutch. This translation process was iterative: The team reviewed phrases and concepts problematic in Dutch and subsequently adjusted the English version, so that neither version (Dutch or English) was encumbered by problematic phrases or expressions in either language. For example, the word “needs” in English, such as in the phrase “unmet needs,” does not translate easily to Dutch. Therefore, the English version was changed to “I need help/support for this,” which allowed the Dutch version to better convey the same idea (i.e., “Ik heb hierbij hulp of ondersteuning nodig”).

Development of the study article

We invited each of the expert panelists to serve as a coauthor of the article by providing feedback for its development and revision. Of the 24 experts (with one married couple reporting as a single unit), 22 wished to serve as coauthors and helped to develop and finalize the study article.

Results

Delphi expert panel consensus

All experts (100%) completed both rounds of the Delphi. Round 1 resulted in 210 total comments regarding priority areas for the questionnaire. The iterative item development process resulted in 157 questions to cover the Delphi panel expert priorities. An additional eight demographic questions were developed (e.g., age, gender identity, autism diagnosis, race/ethnicity), but not subjected to Delphi review (although they were reviewed by the full investigator team, including the autistic transgender coinvestigators). In the second round, 76 items achieved consensus inclusion by the full Delphi panel.

Three items not included by the larger panel were retained based on the ratings by the BIPOC panelists. These items related to the management of finances (two items) and the level of general interaction one had with LGBTQ+ people (one item). One additional item, not retained by the larger panel or the BIPOC panelists, specifically, was retained based on the ratings by the autistic transgender experts. This item asked about whether a lack of autism-friendly care by specialized autism providers was a barrier to accessing autism support services. In total, the iterative measure development process retained 80 items. Five additional questions were generated based on the expert panelist responses of critical missing item coverage, for a total of 85 questions.

Primary topic areas of the gender-diversity and autism questionnaire

Table 2 displays the six primary topic areas of the items retained in the final questionnaire.

Table 2.

Topic Areas of the Gender-Diversity and Autism Questionnaire

Topic area	No. of items (% of total items)	Items (see study's technical website for questionnaire)
Experience of identities	8 (9.4)	1, 2, 3a, 3b, 5a, 5b, 35, 36
Impact of experienced or anticipated discrimination, bias, and violence toward autistic people and transgender people	20 (23.5)	4a, 4b, 13a, 13b, 14a, 14b, 15a, 15b, 16a, 16b, 26c, 26d, 26e, 28d, 28e, 28f, 28g, 29a, 29b, 29c
Tasks and experiences of everyday life	26 (30.6)	6a, 6b, 7a, 7b, 8a, 8b, 9a, 9b, 10a, 10b, 11a, 11b, 12, 17, 18, 19, 20, 21, 22, 23, 24, 26b, 26f, 28b, 28c, 28h
Gender diversity- or autism-related care needs and history	10 (11.8)	25a, 25b, 26a, 27a, 27b, 28a, 33a, 33b, 34a, 34b
Others doubting gender identity or autism	6 (7.1)	30a, 30b, 31a, 31b, 32a, 32b
Experience of community and connectedness	15 (17.6)	37, 38, 39, 40, 41, 42, 43, 44, 45, 46, 47, 48, 49, 50, 51

Open in a new tab

The questionnaire, designed for online administration, is available on the study's technical website (https://osf.io/g63hq/?view_only=3b167a8ed2aa449c859b05a4824aa95f). The questions from the questionnaire, organized under each of the six primary topic areas, are also available on the study's technical website.

Experience of identities

Eight items tap into experiences of gender- and autism-related identities, including: self-reactions to identities, gender identity discernment, and experiences of incongruence between body and identity. Questions also address any self-perceived linkages between gender diversity and autism, as well as whether the individual feels their gender identity will change over time.

Impact of experienced or anticipated discrimination, bias, and violence toward autistic people and transgender people

Almost one-fourth of the items (n = 20) addressed experienced or anticipated discrimination, bias, and violence toward autistic people and transgender people, as well as the perceived impact of these factors on the individual. Half of these items centered specifically on the experience of barriers to accessing needed care or supports (e.g., reduced care access due to worries about providers or the people a person lives with being discriminatory, biased, and violent toward autistic people and transgender people).

Tasks and experiences of everyday life

Questions related to tasks and experiences of everyday living represent the largest subset of items in the questionnaire (more than 30% of the items). The questionnaire assesses a range of everyday living-related topics, including career, finances, dating and romance, and autism-related impacts on accessing care. For many of the topics, the questionnaire presents the respondent with two questions: first, whether this area is a challenge/difficulty that currently affects their life, and second, whether they need help or support in this area.

Gender diversity- or autism-related care needs and history

Ten items focus specifically on gender diversity- or autism-related care, including current care needs (four items) and care history (six items). Questions regarding self-advocacy around gender-related needs and experiences of having gender diversity-related care denied, including during the teen years, are included. The questionnaire also asks respondents about their experience of and need for, as well as the availability of, autism-related support services for adults.

Others doubting gender identity or autism

Four items capture the experience of others (i.e., family members, doctors/therapists) doubting that an individual is indeed transgender/gender-diverse. Two items address the experience of others doubting an individual's autistic identity or diagnosis.

Experience of community and connectedness

Fifteen questions capture social interactions with various others (i.e., LGBTQ+ people, gender-diverse people, autistic people, autistic gender-diverse people, and people in general) and in communities. Items target how much interaction the respondent is experiencing, whether this is the right amount of interaction for them, and any barriers the respondent may face in experiencing wanted connections with others. Questions cover potential barriers to participation in LGBTQ+ and autistic communities, such as discomfort in groups, feeling unwelcome, lack of access to information about these communities/events, and unmet transportation needs.

Item content eliminated by the Delphi panel

Among the 77 items dropped (i.e., those that did not attain Delphi consensus), many were minor variations or detailed extensions of retained items, resulting in a general reduction in the number of items related to specific topics (e.g., retaining two items about career/job, instead of six). Interestingly, none of the items related to general medical care were retained. There are well-established health care disparities in general medical care for autistic adults^34–36 as well as transgender adults,^37–39 but given the need to produce a final instrument that was feasible for autistic transgender/gender-diverse young adults to complete, these items were not considered of the highest priority for this specialized measure.

The item reduction also decreased specificity regarding gender-related goals: The final itemset includes content that focuses primarily on broader gender-related needs, such as accessing medical gender care, instead of obtaining a detailed gender-related profile of an individual (e.g., their wish to be perceived as “male,” specifically). Whereas some questions about the intersection of gender identity experience and autism remained in the final questionnaire, content about whether autism made it harder for an individual to know their gender identity did not achieve Delphi consensus.

Discussion

This study develops and refines the Gender-Diversity and Autism Questionnaire, a self-report tool to capture the needs, experiences, challenges, and resilience of autistic transgender/gender-diverse young adults. The final questionnaire consists of 85 items, clustered across six primary topic areas (Table 2).

The largest number of items retained by the Delphi expert/community panel relates to tasks and experience of daily life (∼31% of the total items), including questions about career, finances, dating and romance, and autism-related impacts on accessing care. The specific challenges autistic transgender people face in the realization of their daily life needs were considered foundational for the self-report tool, with acknowledgement that there may be internal and external factors contributing to these challenges. This primary focus of the questionnaire accords with findings from the larger autism literature that autistic adults often face impediments achieving their daily living-related needs.⁴⁰ Importantly, the hearty inclusion of items related to these topics was also driven by the potential intersectional adaptive disparities faced by autistic transgender/gender-diverse young adults, beyond the experience of being autistic alone.

A young adult's responses to other topic areas within the questionnaire may contextualize the endorsed challenges with daily living, such as those related to challenges and disparities commonly faced by people with this intersectional identity. For example, the second largest subset of questions relates to the impacts of discrimination, bias, and violence toward autistic people and transgender people (∼24% of the total items). This section includes items capturing the real-world impact of these experiences, such as difficulties moving forward with needed autism- or gender-related supports and care due to worries about provider acceptance or understanding.

A subset of questions asks about experiences of others doubting whether an individual is in fact transgender/gender-diverse (i.e., denying their gender diversity). Respondents with these experiences then indicate why they think others have doubted their gender, including whether being autistic seemed to influence others' judgments. Such assumptions about autism leading others to doubt an autistic individual's asserted gender diversity have been previously described in qualitative work with this population.³ In a parallel manner, the questionnaire includes items about others doubting that an individual is autistic. Experiences of autism being missed or doubted have been highlighted in the emerging literature on late/missed autism diagnosis,^41–43 including as related to compensation, masking,^44,45 and/or expressions of autism that differ from common cisgender male autistic expressions.^7,46,47

A subset of questions pertains to current gender-related needs, as well as an individual's history of gender care. Delphi panelists emphasized the importance of questions regarding gender care histories (e.g., reporting retrospectively on the teen years) given the time urgency of obtaining medical gender care interventions during development (i.e., to interrupt the progression of a puberty that does not accord with gender identity), as well as the complexity of advocating for and navigating gender care systems, the effects of which have implications for adult outcomes. The retrospective content in the questionnaire asks whether the young adult requested gender care in the past and whether it was denied.

These experiences are poorly understood and often ignored in the autism and gender diversity literature; yet, the topic of medical decision-making for transgender/gender-diverse youth remains highly politicized, with moves toward banning such care in some countries/communities (e.g., restrictions on gender care in the United States [eight states as of March 2023]⁴⁸ and in Sweden⁴⁹). There is a current fervor over these topics in the lay press and community,^50–52 including as they pertain to the intersection of autism and gender diversity.^53–56 However, evidence indicates that timely gender-affirming medical care during the teen years may be predictive of positive mental health outcomes in young adulthood.⁵⁷ Interestingly, none of the general medical care needs items were retained, which may reflect the relative importance of gender- and autism-related medical needs specifically.

The panel also emphasized the importance of queries regarding social interactions and connectedness with others, including LGBTQ+ people, gender-diverse people, autistic people, autistic gender-diverse people, and people in general. Of note, these questions aimed to capture the respondent's wishes regarding such interactions, asking whether they wanted more, the same, or less connection with these communities. This approach moves beyond traditional queries of autistic people regarding socialization, queries which are often stigmatizing in their assumption that an autistic person is lacking in social connection or motivation.⁵⁸ Also emphasized in the questionnaire is the preferred mode of interaction and any barriers the young adult has experienced in accessing these social connections and communities. Autistic people's experience of barriers to accessing LGBTQ+ communities and events has been slow to be acknowledged or addressed by the larger LGBTQ+ community. A few exceptions are noted, such as neurodivergent- and/or sensory-friendly areas designated within Pride parades.⁵⁹

Although the study team made substantial efforts for equitable representation across ethnoracial identities within the invited Delphi panel, only the U.S. portion of the panel approached proportional representation of BIPOC identities for the country. For this reason, and to capture priorities of BIPOC experts in the autism gender diversity intersection, we employed a second consensus analysis of the BIPOC experts alone to “rescue” items that would have been lost by the larger panel's consensus ratings. Perhaps reflecting the particular intersectional disparities facing autistic transgender BIPOC young adults, the BIPOC experts' ratings saved three items: two addressing everyday financial challenges and one querying the level of connectedness an individual feels with the LGBTQ+ community.

These “rescued” items might relate to the additional systemic financial burdens faced by BIPOC individuals, such as in the United States,⁶⁰ and the nuanced intersections of race, ethnicity, culture, and queerness.^61–63 Additionally, to capture the priorities of the autistic transgender experts, a consensus analysis was repeated for the autistic transgender experts, and one item was rescued: The item asks whether a lack of autism-friendly care by specialized autism providers is a barrier for an individual accessing needed autism supports. The larger panel had agreed, through consensus, on the importance of asking about gender care barriers, but the autistic panelists equally focused on autism-related supports that may be experienced as non-affirming by autistic people.

This study was innovative in its systematic approach to identifying experts in the common intersection of autism and gender diversity. Although attention for community-based initiatives has increased in both autism and gender diversity research, our multi-input multipronged approach utilizing diversified methods, including broad web-based searches, to identify potential experts is innovative in its efforts to move beyond traditional identification and invitation approaches for expert panels. This study aimed to employ the broadest conceptualization of “expertise,” transcending traditional Delphi expert panels, which reflect primarily academic and/or “well-recognized” expertise.⁶⁴ The 100% expert response rate for each round of the Delphi process speaks to the importance and relevance of this initiative held by the expert community and academic collaborators.

The study was also innovative in its focus on codeveloping the questionnaire in two countries/cultural contexts simultaneously. The codevelopment of the questionnaire in two different languages allowed for adjustments from English to Dutch and from Dutch to English. For example, easily comprehensible phrases in English were not always translatable to Dutch and vice versa. With the opportunity to change phrases in both languages simultaneously (given the codevelopment in both languages), we were able to achieve solutions in phrasing where simplicity of expression was not compromised in either version/language.

The codevelopment of the measure for two countries and languages will allow for cross-cultural research on intersectional autism and gender diversity. Cross-cultural investigations between the Netherlands and the United States are particularly relevant for the field of transgender research, given findings that gender-diverse individuals in the Netherlands have mental health outcomes broadly equivalent to—or better than—their cisgender peers,^57,65 which is often not observed in other countries.^66–68 The gender minority stressors that are so often reported in the United States^69–71 may be significantly reduced in the Netherlands.^72–74

Conversely, research has shown that health care providers in the Netherlands may possess more stigmatizing attitudes toward autism when compared with other European countries and the United States, which may suggest that mental health outcomes for autistic individuals might be more positive in the United States than in the Netherlands.⁷⁵ Therefore, comparing the experiences from these countries may provide a window into intersectional autism and gender diversity with and without intersectional gender minority stress and/or autism minority stress. Through future international studies between the United States, the Netherlands, and other countries/regions, the use of this instrument may help to advance understanding of the mechanisms intrinsic to the intersection of autism and gender diversity, as well as those extrinsic (i.e., related to contexts such as culture and health care systems).

Of note, there is a study currently in progress in the United States and the Netherlands employing the questionnaire along with broader mental health- and gender-related measures, the results of which will be reported as they become available.⁷⁶ One of the aims of this ongoing study is to identify potential protective factors for autistic transgender young adults as well as sources of harm, with the ultimate goal of developing recommendations to promote autistic transgender well-being, including through the reduction of oppressive systems and practices.

Approaches for using the questionnaire

Although there is a significant proportional intersection of autism and gender diversity, this is still a relatively small population. Therefore, recruitment of sample sizes sufficient for traditional psychometric development (e.g., greater than 300 respondents for exploratory factor analyses⁷⁷ and greater than 500 respondents [cells of 250] for differential item functioning analytics⁷⁸) may be challenging to accomplish in the near term. However, as a structured questionnaire that captures the key identified experiences of autistic transgender young adults, a range of statistical/analytical approaches can be applied without domain-level factor analytics in place. In fact, some of the most well-used and studied instruments rely on analytic and tabulation approaches instead of factor analytic domain scores.^79,80

In addition to such research applications, the questionnaire may have relevance as a structured aid for clinical interviews to capture the needs and resilience factors of an autistic transgender young adult. Traditional clinical interviews with autistic individuals may present challenges, as clinical interviews tend to rely on open-ended questions, requiring language formulation and broad conceptualization that may be relatively more difficult for autistic people.⁸¹ In fact, in our previous research,³ autistic transgender youth and young adults reported primary difficulties communicating and self-advocating for their gender-related needs due to communication and thinking differences. Therefore, the questionnaire, which presents primarily closed-ended structured questions, may provide clinicians and clinics with a more autism-friendly information-gathering approach, covering a broad range of topics relevant for the well-being and resilience of autistic transgender young adults. However, future research will be needed to understand how the measure may best be integrated into clinical practice and to evaluate its utility in clinical settings.

The questionnaire may also have broad community uses and serve as a structured self-advocacy tool for young adults seeking to express their unmet needs, stressors, and resilience to helpful others (e.g., their doctor, therapist, other support provider). However, it must be noted that the questionnaire may not be appropriate in all settings, particularly if a young adult's responses could be misused to restrict needed care, such as with transphobic providers and/or parents. Furthermore, we developed the items of the questionnaire in the United States and the Netherlands contexts and therefore may need revisions for applications in other settings.

Limitations

This study had several limitations. Although significant efforts were made to maximize representation across race and ethnicity, the racial and ethnic backgrounds of the expert panel skewed toward White not Latina/o/e. Among the experts who are autistic transgender, the ethnoracial distribution skewed toward White not Latina/o/e (50% of the experts). Of note, all the experts who are not autistic transgender were White not Latina/o/e. The proportion of ethnoracial identities within the U.S. portion of the panel approached the overall proportion of BIPOC individuals in the United States⁸² (when calculating proportions based on response units because the parent couple worked together to create a single response).

However, simply paralleling the general proportions of ethnoracial identities in a country is insufficient for truly equitable research, as the voices of majority representatives are statistically weighted just by their proportional representation on the expert panel. Furthermore, proportional representations across ethnoracial identities in the non-U.S., primarily English-speaking countries (i.e., Australia, United Kingdom, and Canada), were unbalanced, with four of five expert panelists being White.^83–85 Of the six panelists from the Netherlands, five were White as well. We attempted to counterbalance—to some degree—these challenges by conducting separate consensus calculations for the BIPOC experts, but clearly, future studies will need to engage even greater efforts to identify and include BIPOC experts in the intersection of autism and gender diversity.

One factor that might have driven underrepresentation of BIPOC experts in the web-based search is that social media platforms may float content by White contributors to the top of web searches, related potentially to internally biased algorithms^86,87 and the discrimination and reduced attention that BIPOC individuals' content may receive.^88,89 Furthermore, although half of the eight study personnel have BIPOC identities, none of the study staff were Black, Latina/o/e, or Indigenous. There is evidence that a lack of representation in study staff across ethnoracial identities can reduce the likelihood of engagement from those unrepresented ethnoracial identities.⁹⁰

The underrepresentation of BIPOC experts may also relate to the complexity of intersecting marginalized identities. Given that racial identity is so often interlocked with systems of oppression, compounding the various identities that come with being autistic and transgender may make coming out and participating in these types of expert panels more challenging. Discrimination, bias, and violence toward autistic and transgender people also affect BIPOC autistic and/or transgender people disproportionately,^91,92 making safety an important issue to consider when recruiting and reaching out to BIPOC autistic transgender advocates.

Although the study sought to identify experts in a more equitable manner, the online search approach identified candidate experts with web presences related to the intersection of autism and gender diversity. Members of the expert panel observed that many potential experts would not have been identified through this process, as not everyone has a web presence related to this topic, and there are some autistic transgender people who are hesitant to talk about the intersection out of concern that the intersection is being weaponized by anti-trans political efforts that seek to diminish transgender rights.⁹³

Cross-national differences are a primary focus for our ongoing study, which is administering the questionnaire to autistic transgender young adults in the United States and the Netherlands. However, we did not analyze potential differences in priorities between the Netherlands and the United States experts within this study because: (1) the expertise represented on the panel from each country was not equal (i.e., more autistic transgender individuals in the U.S. panel subgroup compared with the Netherlands) and (2) there were different numbers of experts from each country, with insufficient representation within the Netherlands to analyze for differences (i.e., 14 from the United States, six from the Netherlands, and five from other countries). Uneven numbers between the United States and the Netherlands related largely to the extreme difference in population size between the two countries.

Another limitation is the challenge this line of research will face in achieving sufficient sample sizes within future measure development studies of the questionnaire to perform factor analytics to identify domain-level factors/scores. As noted above, tally-based analytics, as well as item-level comparisons of critical items, provide a path forward for analyses with the questionnaire in the near future.

Although the questionnaire was cocreated by autistic people with experience in plain language, the questionnaire is not in plain language. Research is needed to understand accessibility limitations of the current questionnaire, and additional revisions of the wording may be necessary. Additionally, we developed the questionnaire for 18- to 35-year-olds specifically, but much of the content may be appropriate for other age ranges (e.g., adolescence, middle adulthood, and later adulthood). Future studies will be needed to tailor itemsets for broader age ranges. Finally, future research would benefit from investigating additional intersectional experiences of autistic transgender people, such as belonging to marginalized groups based on ethnoracial identity, disability experience external to autism, and/or socioeconomic status.

Conclusions

This study developed and refined a self-report/self-advocacy questionnaire for autistic gender-diverse young adults: The Gender-Diversity and Autism Questionnaire. This instrument may help researchers, clinicians, and autistic gender-diverse individuals themselves to pinpoint key needs, risks, and resilience. The study was coled and codesigned by autistic transgender investigators and used a proof-of-principle approach, employing a broad definition of expertise and a multipronged multimodal search approach in an attempt to maximize the equity and representation of the expert development team.

Although the process used here recruited a diversified expert Delphi panel for a study on the experience of intersectional autism and gender diversity, this expert identification approach may be extrapolated to locate community-based experts within other clinical and health care-seeking populations. A multipronged iterative search approach may be helpful in identifying and diversifying community-based expert panels recruited for a range of research populations and research questions.

Authorship Confirmation Statement

J.F.S.: Conceptualization (lead), data curation (equal), formal analysis (lead), funding acquisition (lead), methodology (lead), project administration (lead), supervision (lead), writing—original draft (lead), writing—reviewing and editing (lead). L.S.M.: Conceptualization (equal), data curation (equal), formal analysis (equal), project administration (equal), supervision (equal), visualization (equal), writing—original draft (equal), writing—reviewing and editing (equal). D.R.: Data curation (equal), formal analysis (equal), project administration (equal), visualization (equal), writing—original draft (equal), writing—reviewing and editing (equal). R.C.: Conceptualization (equal), methodology (equal), writing—reviewing and editing (equal). S.E.K.: Conceptualization (equal), methodology (equal), writing—reviewing and editing (equal). M.R.: Formal analysis (equal), visualization (equal), writing—original draft (equal), writing—reviewing and editing (equal).

M.-C.L.: Conceptualization (equal), methodology (equal), writing—reviewing and editing (equal). M.S.: Visualization (supporting), writing—original draft (equal), writing—reviewing and editing (equal). F.V.G.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (equal). L.K.D.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (equal). A.Sc.: Conceptualization (equal), methodology (supporting), resources (equal), writing—reviewing and editing (supporting). A.L.C.d.V.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (equal). F.G.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). L.E.-L.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). A.L.M.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). N.L.E.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting).

e*C.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). Y.P.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). W.L.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). D.-Y.K.: Conceptualization (equal), data curation (equal), investigation (supporting), methodology (supporting), writing—reviewing and editing (supporting). I.M.v.W.: Visualization (equal), writing—original draft (equal), writing—reviewing and editing (equal). V.M.R.-R.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). M.C.H.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). M.F.W.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). G.A.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting).

A.B.-v.R.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). L.X.Z.B.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). A.F.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). G.B.W.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). A.D.G.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). E.K.G.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting).

S.K.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). N.P.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). I.A.B.: Conceptualization (equal), methodology (supporting), writing—reviewing and editing (supporting). A.So.: Data curation (equal), project administration (equal), writing—reviewing and editing (supporting). A.L.F.: Conceptualization (supporting), writing—reviewing and editing (supporting). A.I.R.v.d.M.: Conceptualization (lead), data curation (equal), formal analysis (lead), funding acquisition (lead), methodology (lead), project administration (lead), supervision (lead), writing—original draft (lead), writing—reviewing and editing (lead).

Author Disclosure Statement

No competing financial interests exist.

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.).

^{^*}

In this study, we employ the term “gender diversity” in accordance with the World Professional Association for Transgender Health¹ as an umbrella descriptor for gender identities that differ from the assigned sex at birth (e.g., transgender, nonbinary). However, it must be acknowledged that some of the coauthors of this study prefer the term “gender divergent,” and within the finalized questionnaire developed by this study, “The Gender-Diversity and Autism Questionnaire,” the hyphenated term “gender-diversity” was employed as the study team concluded that it was easier to read by respondents.

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PERMALINK

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, PsyD

Lucy S McClellan, BA

Daphne Raaijmakers, MSc

Reid Caplan, BA

Sascha E Klomp, BA

Mindy Reutter, AB

Meng-Chuan Lai, MD, PhD

Minneh Song, BA

Finn V Gratton, MA, LMFT, LPCC

Laura K Dale

Anouschka Schutte, BTr

Annelou LC de Vries, MD, PhD

Finn Gardiner, MPP

Laura Edwards-Leeper, PhD

Amélie Lune Minnaard

Niki Lou Eleveld, MA

endever* Corbin

Yenn Purkis, MFA

Wenn Lawson, PhD

Da-Young Kim

Isa M van Wieringen, BSc

Victoria M Rodríguez-Roldán, JD

Marvel C Harris

Madeline F Wilks, MD

Gee Abraham, BS

Anouk Balleur-van Rijn, MSc

Lydia XZ Brown, Esq

Alexandra Forshaw

Gary B Wilks, MD

April Dawn Griffin

Elizabeth K Graham, BA

Sandy Krause, BA

Noor Pervez, BA

Inge A Bok, PhD

Amber Song, BA

Abigail L Fischbach, BA

Anna IR van der Miesen, MD, PhD

Abstract

Background:

Methods:

Results:

Conclusions:

Community brief

Why is this an important issue?

What were the results of the study?

What do the authors recommend for future research on this topic?

How will these findings help autistic adults now or in the future?

Introduction

Methods

Identification of expert Delphi panel

FIG. 1.

Phase 1: initial list of candidate experts identified

Phase 2: initial reduction of candidate experts list

Phase 3: ranking of autistic transgender and contributor/provider candidate experts

Plan for proportional representation within the expert panel

FIG. 2.

Table 1.

Iterative Delphi measure development process

Development of the study article

Results

Delphi expert panel consensus

Primary topic areas of the gender-diversity and autism questionnaire

Table 2.

Experience of identities

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

Others doubting gender identity or autism

Experience of community and connectedness

Item content eliminated by the Delphi panel

Discussion

Approaches for using the questionnaire

Limitations

Conclusions

Authorship Confirmation Statement

Author Disclosure Statement

Funding Information

References