Needs Assessment for the Development of an Evidence Based Practice to Support Teens with Co-Occurring ASD and Gender Dysphoria

Thursday, May 11, 2017: 5:30 PM-7:00 PM
Golden Gate Ballroom (Marriott Marquis Hotel)
J. F. Strang1, M. Knauss1, L. Kenworthy2, L. Russell1, M. D. Powers1 and L. G. Anthony1, (1)Children's National Health System, Washington, DC, (2)Children's National Medical Center, Rockville, DC
Background: ASD and gender dysphoria (GD) often co-occur (de Vries et al., 2010; Strang et al., 2014), and the co-occurrence presents diagnostic/treatment challenges (Strang et al., 2016). Models for pediatric GD care programs exist (e.g., Menvielle et al., 2012), but there are no studies of clinical service models to address the needs of GD youth with ASD.

Objectives: Address two primary questions: What are the concerns/needs of youth with ASD and GD? How can a therapeutic group program best support youth with this co-occurrence and their families?

Methods: As part of a gender discernment/support group program for youth with GD and ASD, we conducted in-depth needs assessments with twenty-one participants (13 parents and 8 youth with ASD and GD) through written feedback following group sessions, and interviews (transcribed verbatim) at the completion of one year in the program. Framework Analyses (Ritchie et al., 2003) were conducted using Dedoose (SocioCultural Research Consultants, 2016) to identify and organize themes, with separate schema for youth and parents due to contrasts in themes between the groups. A consensus approach was employed to avoid relying on a single researcher’s perspective. As a final validity check, the frameworks were presented to the participants to ensure they reflected their experiences.

Results: Youth data organized into primary themes: the significance of finding connection with others who have GD and ASD; a wish to increase social connections with group members, though awareness that ASD interferes with social connections; and the importance of role models of gender outcomes (i.e., community adult visitors to group who reflect a range of gender outcomes). Youth data revealed little concern with real-world challenges of ASD or GD, excepting specific focus on gender-related medical treatments. The parent framework included: a strong parent need for education and resources (e.g., legal and medical aspects of gender transition); the centrality of challenges related to ASD (i.e., GD may be the most noticeable issue at first, but it is less impactful than the ASD); and a significant parent concern regarding real-world gender and ASD challenges (school, transition to adulthood, college, informing extended family regarding gender transition). A comparison between youth and parent data identified one common theme: the unique/meaningful quality of acceptance/community provided by a group specifically for GD and ASD. Contrasts between youth and parents included: youth tended to focus on the social nature of the group, whereas parents focused on the practical needs of their children; the overall tone of the youth was less worried and more hopeful than that of their parents; and the youth focused primarily on gender, whereas their parents focused initially on gender, and increasingly on the challenges/demands of ASD over time.

Conclusions: This is the first study to directly capture the voices, experiences and needs of individuals with ASD and GD and their families. Primary themes for developing an evidence-based group program include the importance of concrete exemplars of a range of gender outcomes, as well as blending of support group and ASD intervention group models for group treatment.