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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.
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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.