The Gender-Diversity and Autism Questionnaire: A Community-Developed Clinical, Research, and Self-Advocacy Tool for Autistic Transgender and Gender-Diverse Young Adults.

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.

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.

A Clinical Program for Transgender and Gender-Diverse Neurodiverse/Autistic Adolescents Developed through Community-Based Participatory Design.

Objective: A series of studies report elevated rates of autism and autistic characteristics among gender-diverse youth seeking gender services. Although youth with the co-occurrence present with complex care needs, existing studies have focused on co-occurrence rates. Further, clinical commentaries have emphasized provider-centered interpretations of clinical needs rather than key stakeholder-driven clinical approaches. This study aimed to employ community-based participatory research methodologies to develop a key stakeholder-driven clinical group program.Method: Autistic/neurodiverse gender-diverse (A/ND-GD) youth (N = 31), parents of A/ND-GD youth (N = 46), A/ND-GD self-advocates (N = 10), and expert clinical providers (N = 10) participated in a multi-stage community-based participatory procedure. Needs assessment data were collected repeatedly over time from A/ND-GD youth and their parents as the youth interacted with one another through ongoing clinical groups, the curriculum of which was developed progressively through the iterative needs assessments.Results: Separate adolescent and parent needs assessments revealed key priorities for youth (e.g., the importance of connecting with other A/ND-GD youth and the benefit of experiencing a range of gender-diverse role models to make gender exploration and/or gender affirmation more concrete) and parents (e.g., the need for A/ND-related supports for their children as well as provision of an A/ND-friendly environment that fosters exploration of a range of gender expressions/options). Integration and translation of youth and parent priorities resulted in 11 novel clinical techniques for this population.Conclusions: With generally high acceptability ratings for each component of the group program, this study presents a community-driven clinical model to support broad care needs and preferences of A/ND-GD adolescents.

"They Thought It Was an Obsession": Trajectories and Perspectives of Autistic Transgender and Gender-Diverse Adolescents.

Despite research exploring autism in gender-diverse adolescents, no studies have elicited these individuals' perspectives. In-depth interviews with 22 well-characterized autistic gender-diverse adolescents revealed critical themes, including: recollections of pre-pubertal gender nonconformity; vivid experiences of gender dysphoria; a fear of social gender expression due to perceived animosity toward transgender people; and specific challenges that result from the interplay of gender diversity and neurodiversity. During the ~ 22 month study social gender affirmation increased in six participants and gender dysphoria attenuated in four participants. Given the ethical imperative to understand and prioritize the voiced perspectives and needs of autistic gender minority adolescents as well as the discovery of shared themes and experiences in this population, results should inform clinical research approaches and priorities.