Why Community Engagement Is Needed in Gender/Autism Research
May 10, 2022
Community-based participatory research (CBPR) is driven by the communities for which the research is ultimately intended. The Gender and Autism Program at Children’s National Hospital in Washington, D.C., focuses on the intersection of gender identity diversity and autism. This is a field of research that requires deep community engagement in the design and execution of studies to reduce the risk that research will further marginalize people who already face marginalization for being both autistic and transgender.
There are more gender-diverse and transgender people who are autistic than most realize. The largest study to date reported that in almost 650,000 individuals, the odds of being autistic among transgender/gender-diverse people was more than six times that for cisgender people. Similarly, gender identity diversity appears to occur more often than chance among autistic people. Given how common this intersection is and the demand for clinical supports and care in this community, there is an urgency for research to inform appropriate care. But given the controversies and complexities of this field, this research must be co-envisioned and conducted by people with lived experience.
Autism specialists and researchers rarely have training in gender diversity, so they may have difficulty understanding the gender-related experiences and needs of autistic people. Likewise, gender specialists and researchers often do not have training in autism, so they may struggle to understand the experiences and communication styles of neurodivergent individuals. Additionally, the intersection of autism and gender diversity presents some clinical care challenges that are different from those faced by autistic and transgender communities independently.
The risk of assumptions about the nature of the autism and gender diversity co-occurrence are profound. For example, decisions regarding gender-affirming medical care may be impacted by the care team’s assumptions about autism. As of quite recently, it has been proposed that gender diversity experiences in autistic people are driven by strong interests common in autism. Others have suggested that autistic transgender people may not, in fact, be truly autistic. Such perspectives could impact the civil rights of autistic transgender people — and these perspectives have been asserted without the engagement of the autistic transgender community.
In the research field of intersecting autism and gender diversity, failure to integrate the lived experience, priorities, and perspectives of autistic transgender people may result in study interpretations that are not only off base in terms of community needs, but could also be harmful to the community. As clinical researchers serving this population, our team has seen firsthand how research interpretations can impact the day-to-day clinical care and civil rights of autistic transgender individuals, including access to supports and care for both autism and gender-related needs.
OAR has funded our international study of autistic transgender young adults in the United States and The Netherlands. The study aims to better understand the experiences, needs, risks, and resilience factors of autistic transgender people in each country. CBPR approaches are woven into the study design in multiple ways. First, the study team is led by five investigators, two of whom are themselves autistic transgender. The research questions have been co-developed by a team of 24 community-based co-researchers, more than half of whom are autistic transgender/gender-diverse. These co-researchers are not research participants, but instead co-investigators invited to share in decision-making regarding the focus and execution of the study. In the last phase of the study, these co-researchers will lead the interpretation of the study findings to maximize the relevance of the findings for autistic transgender communities.
A special feature of the study design is the intentionally diverse make-up of the community co-researcher team. The co-researchers were identified and invited to join the project based on a complex array of factors, including the nature of their lived experience, intersectional identities, and their service to the autistic transgender community. Identification involved an intensive community search employing structured searches across social media platforms, social support organizations, advocacy initiatives, and healthcare organizations. Ultimately, the co-researcher team was invited based on an algorithm that optimized diversification across identities, professional experiences, and lived experience.
We are currently in the midst of our study, and have several initial observations for researchers seeking to conduct CBPR with this population:
Our international team is excited about the study’s progress thus far. In the final phase, we are looking forward to our large community co-researcher team contextualizing the study findings. We expect that there will be a range of perspectives, and for the dissemination of findings, we will work to represent both majority and minority interpretations and perspectives where consensus is not possible or appropriate. Ultimately, our hope is that this study will lay the groundwork for improved supports and care for those at the intersection of autism and gender diversity.
John F. Strang, Psy.D., is a neuropsychologist and the founder and director of the Gender and Autism Program at Children’s National Hospital in Washington D.C. Through his research, he first identified an over-representation of gender identity diversity among autistic youth and then went on to lead the development of international care guidelines for the many young people who are both autistic and transgender. In founding the Gender and Autism Program in 2017, Dr. Strang established the first clinical and research initiative dedicated specifically to transgender neurodivergent youth. Dr. Strang’s research includes national and international funded projects focused on autism, gender diversity, and their intersection.