Autistic Gender Dysphoric Youth: Community-Based Participatory Research Development of a Clinical Program

Oral Presentation
Friday, May 11, 2018: 10:30 AM
Willem Burger Hal (de Doelen ICC Rotterdam)
J. F. Strang1, M. Knauss2, L. Kenworthy1, D. Gohari1, M. D. Powers1 and L. Anthony3, (1)Children's National Health System, Washington, DC, (2)Alliance of Community Health Plans, Washington, DC, (3)University of Colorado, Denver, Aurora, CO
Background: The co-occurrence of ASD and Gender Dysphoria (GD) in adolescents is clinically complex, as autistic youth often have differences in self and social-awareness, future thinking/planning, and self-advocacy skills, skills critical for both gender identity discernment and, when appropriate, social and physical gender transition. Yet, there are no clinical programs/approaches developed for autistic gender dysphoric (ASD+GD) youth.

Objectives: This study assesses the clinical needs/priorities of ASD+GD youth and their parents, and through Community-based Participatory Research (CBPR) methodology, develops and assesses the acceptability/usefulness of a novel clinical group program for this co-occurrence.

Methods: Youth age 12-19 with concurrent DSM-V diagnoses of ASD and GD (Tanner stage II–V), and their parents (total individuals, N=57), participated in an ongoing clinical group program aimed at supporting autism-related and gender-related needs, coping, and positive outcomes for ASD+GD youth. Youth and parents provided individual written feedback to specific probes following each clinical session addressing what they desired/needed from the clinical service, perceived successful/unsuccessful components of the program, and individual clinical/support needs. Youth and parents also completed in-depth interviews at three-month intervals. Successive clinical group sessions applied participant recommendations from previous youth/parent feedback according to CBPR methodology. Independent Framework Analyses (FA) were conducted with youth and parent data, and compared for thematic convergence/divergence. A key-stakeholder group including autistic, transgender, transgender autistic, and transgender de-transitioned self-advocates, as well as clinical gender and autism specialists reviewed the FA thematic needs/priorities, and the clinical priorities were translated into specific clinical methods/techniques. Youth/parents rated each resulting clinical approach for its usefulness on a continuous 10cm slider scale.

Results: Clinical priorities (themes) shared by both youth and parents include the importance of a group program specifically for gender spectrum autistic youth and their parents (as opposed to separate autism or transgender groups), structured opportunities for gender-role exploration in the group context, and teaching of specific skills for gender presentation (e.g., makeup/styling skills and mannerisms). A youth priority not appearing in the parent thematic framework was the recommendation to create opportunities for youth to meet a range of community visitors at different points on the gender spectrum to serve as concrete role models for diverse gender paths/options. Parent-specific thematic priorities for their children included supports for safety awareness and safety skills and supports to explore whether youth experiences of gender might be impacted/driven by autism-related characteristics (e.g., less flexible thinking). Eighteen clinical techniques were derived from the thematic priorities of youth and their parents. Parent ratings of the usefulness of the clinical approaches were high (Mean for all approaches=87.27; SD=6.96, with a range 0-100, 50 as a midpoint, and higher scores reflecting greater perceived utility), as were youth ratings (M=70.00; SD=15.74).

Conclusions: CBPR methodology captures the clinical priorities of ASD+GD youth and their parents. Novel clinical components emerged including recommendations for introducing ASD+GD youth to a range of adult gender spectrum individuals (e.g., transgender individuals, cisgender formerly transgender individuals, gender expansive individuals who use no medical gender supports, etc.) to assist in gender discernment, and practical instruction in skills for gender expression/style.