Transgender/gender-diverse people experience gender dysphoria, a mismatch between their gender identity and sex assumed at birth. Gender dysphoria occurs frequently with autism. In fact, studies report that as many as 22.5 percent of transgender individuals have existing ASD diagnoses and as many as 15 percent of autistic adults report a transgender identity.
Depsite those statistics, little clinical research has been done focusing on autistic gender-diverse/dysphoric individuals and the few that have been done have focused primarily on youth. An OAR-funded study, Autistic Transgender and Gender-Diverse Adults, aims to fill that gap. Principal investigators Anna van der Miesen, M.D., John Strang, Psy.D., and Meng-Chuan Lai, M.D., Ph.D. will identify primary needs, risks, and resilience factors in autistic gender-diverse/dysphoric adults and translate these findings into an ASD-friendly information and support guide. Two of the co-investigators are autistic and transgender themselves, which affords an authenticity of lived experience.
Anna van der Miesen, M.D., is a consultant medical doctor in child and adolescent psychiatry at the Center of Expertise on Gender Dysphoria, Department of Child and Adolescent Psychiatry, VU University Medical Center in Amsterdam, The Netherlands. John Strang, Psy.D., is the director of the Gender and Autism Program at Children’s National Medical Center in Washington, D.C. Meng-Chuan Lai, M.D., Ph.D. is a clinician scientist and assistant professor in the Department of Psychiatry at University of Toronto in Toronto, Ontario, Canada.
The Center of Expertise on Gender Dysphoria serves the gender care needs for The Netherlands’ entire population and first observed and published on the co-occurrence of autism and gender-diversity/dysphoria in 2010. The Gender and Autism Program at Children’s National Medical Center was the first founded specialty program for autistic gender-diverse/dysphoric youth and led the development of the international clinical care guidelines for autistic gender-diverse/dysphoric adolescents.
The primary aim of the study is to identify primary needs, risks, and resilience factors in autistic gender-diverse/dysphoric adults and to translate these findings into an ASD- and community-friendly format. There is no current resource for that population to use to know what supports, treatments, and outcomes, etc. have worked for others with the co-occurrence or for identifying and avoiding common pitfalls. Parents, healthcare providers, policymakers, autism specialists, and gender specialists also do not have a resource to inform them about the co-occurrence in adulthood, such as practical strategies or approaches that have worked for others.
A panel of 24 self-advocates and key stakeholder experts will identify priority topics and questions for a qualitative interview questionnaire. That questionnaire will be administered to 60 autistic gender-diverse/dysphoric adults (age 18-35) from both the United States and Europe. Thirty participants with autism spectrum disorder (ASD) will be recruited through the researcher’s clinical programs. The other 30 will be recruited through autistic and gender-based community organizations and an autism diagnosis confirmed through diagnostic tools.
The questionnaire will include a gender identity-related inclusion/exclusion question: “Are you transgender, transgender binary, transgender nonbinary, gender nonbinary, agender, or gender diverse?” In addition to that questionnaire, participants will also answer standardized questionnaires, including a demographics and background questionnaire, ASD and social functioning characterization, gender-related characterization, and a mental health and quality of life characterization.
The study will follow best practice guidelines for including autistic adults in research, accommodating various communication styles. Study participants will be able to complete the qualitative interview in person, on the phone, online, or via video conference. The standardized questionnaires will be available to be completed online, mailed, or in person.
A qualitative analysis done by the three researchers and the two co-investigators will:
- Characterize gender identities, gender-related needs, gender histories, and gender trajectories
- Characterize participant feelings about the gender care they have or have not received, both currently and in the past
- Identify stressors, risks, and the supports participants wish to have
- Identify strengths, resilience factors, successful current supports, and common solutions to challenges
The researchers will present the findings from the interviews and questionnaires in a presentation to the expert panel. Panel members will provide the researchers with feedback about how to interpret the findings and put them in context with a focus on the practical needs of the autistic gender-diverse/dysphoric community.
With that information, the researchers will create:
- A community-friendly information and support guide: The guide will include information about common needs, risks, strengths, and solutions identified in the study for immediate use by individuals, their families, and support/provider teams. To reach the most people, the guide will be disseminated through several international websites.
- An academic publication: The report will describe the qualitative interview instrument, the results of the qualitative analysis, and information on the feasibility of this type of study.
By categorizing the range of risks and needs, the study will provide individuals, clinicians/providers, and families with a framework of critical topics for assessment and support. In addition to a focus on challenges, this study will also ask participants to share practical solutions (i.e., what has worked in their lives). By identifying what has been helpful in participants’ lives and their identified areas of strength, adaptation, and resilience, the study aims to produce a number of potential solutions for individuals and their providers and families.