Background: This study sought to obtain an in-depth understanding of autistic transgender and/or non-binary adults' experiences in accessing, or trying to access, gender identity health care (GIH). To our knowledge, no prior study researched this topic.
Methods: Through semi-structured interviews, we obtained the first-hand experiences of 17 participants. H.B. (cisgender, non-autistic) conducted a reflexive thematic analysis using an inductive approach, in collaboration with K.M., an autistic transgender disability community researcher, and under the supervision of S.K.K., a cisgender autistic autism researcher.
Results: Thematic analysis determined that poor knowledge of professionals, accessibility issues, and bureaucratic and economic barriers impacted participants' experiences when accessing GIH. Participants experienced a perceived lack of professional knowledge around autism and gender diverse health care needs, limited communication methods and accommodations, and misdiagnosis of mental health difficulties. Accessibility issues included unmet sensory needs, disruption to routine, and a lack of local provision. Further, participants shared that they struggled with unclear processes, standardization of care, long waiting lists, and confusing or inaccessible insurance coverage. Recommendations for improvements highlighted the need to listen to service users to positively impact their experiences in accessing GIH.
Conclusion: This study suggests that more training needs to be given to health care providers and professionals around autistic experience to help improve providers' competence in communication and providing person-centered accommodations. More training around gender diverse identities is needed, as well as increased knowledge on the co-occurrence of autism and transgender/non-binary identities, to positively impact patient experiences and help improve access to care.
Keywords: autistic adults; gender identity healthcare; gender-diverse; lived experience; non-binary; thematic analysis; transgender.
Why is this an important issue?: Many gender-diverse adults are also autistic. Gender Identity Health care (GIH) provides care to transgender people (those whose gender does not correspond with their assigned sex at birth), and non-binary individuals, who identify with a gender outside of the gender binary (female or male). Treatments can include hormone replacement therapy, voice coaching, talking therapies, and surgery. Past research has shown how both the gender diverse community and autistic people face similar difficulties when accessing health care. It is, therefore, important that autistic people can access this care without worry and fear of rejection.
What was the purpose of this study?: We wanted to understand the experiences of autistic adults in accessing, or trying to access, GIH. We wanted to know what worked well and what might need improvement.
What did the researchers do?: The lead researcher's (H.B.’s) experiences supporting a transgender autistic person who was denied GIH inspired this study. For her master's thesis H.B. (cisgender, non-autistic) worked with Katie Munday, an autistic transgender and non-binary researcher and also a master's student at the time. H.B. was supervised by S.K.K., a cisgender autistic autism researcher.H.B. interviewed 17 transgender autistic adults about their experiences in accessing or trying to access GIH, and their recommendations for improvements. The researchers looked at the similarities across the participants' experiences.
What were the results of the study?: We found that many different things impacted participants' experience when accessing GIH. Participants felt that many professionals had little knowledge on autism or the health care needs of gender diverse people. They had difficulty in accessing clinics they needed for their health care, because of the lights or sounds in the clinic, the disruptions to their routine, or the distance to the clinic. Broader issues affected access to the GIH that participants needed, such as long wait lists and poor or confusing health insurance coverage. Further, participants gave recommendations for improvements, which highlighted the need to listen to service users to positively impact their experiences in accessing GIH.
What do these findings add to what was already known?: Work around gender diverse autistic adults' experiences is growing and this work adds to that knowledge around GIH specifically. These findings highlight the issues that gender-diverse autistic adults have when trying to access GIH, allowing professionals to reflect on their practice and the place in which they work.
What are potential weaknesses in the study?: Participants consisted mostly of white English-speaking individuals, recruited online.
How will these findings help autistic adults now or in the future?: Participants' experiences and recommendations for GIH services could help improve the experiences of autistic adults, and other individuals who access GIH.This work, and the methods used within it, highlight the importance of centering the lived experiences of gender-diverse autistic adults as experts on their own experiences.
Copyright 2023, Mary Ann Liebert, Inc., publishers.