A Clinical Program for Transgender and Gender-Diverse Neurodiverse/Autistic Adolescents Developed through Community-Based Participatory Design

John F. Strang, Childrens National Health System
Megan Knauss, Childrens National Health System
Anna van der Miesen, Amsterdam UMC - Vrije Universiteit Amsterdam
Jenifer K. McGuire, University of Minnesota Twin Cities
Lauren Kenworthy, The George Washington University School of Medicine and Health Sciences
Reid Caplan, Autistic Self Advocacy Network
Andrew Freeman, University of Nevada, Reno
Eleonora Sadikova, Childrens National Health System
Zosia Zaks, Towson University
Noor Pervez, Autistic Self Advocacy Network
Anouk Balleur, Parnassia Psychiatric Institute
D. W. Rowlands, University of Maryland, College Park
Ely Sibarium, Yale University
Laura Willing, Childrens National Health System
Marissa A. McCool, Augsburg University
Randall D. Ehrbar, Whitman-Walker Health
Shannon E. Wyss, Children’s National Medical Center
Harriette Wimms, FAMILY HEALTH CENTERS OF BALTIMORE
Joshua Tobing, National Women’s Law Center
John Thomas, Falls Church
Julie Austen, Carolina Converge Gender Affirming Services
Elyse Pine, LGBT Health Resource Center
April D. Griffin
Aron Janssen, NYU Grossman School of Medicine
Veronica Gomez-Lobo, Childrens National Health System
Abigail Brandt, Childrens National Health System
Colleen Morgan, Childrens National Health System
Haley Meagher, Childrens National Health System
Dena Gohari, Childrens National Health System
Laura Kirby, Childrens National Health System
Laura Russell, Childrens National Health System
Meredith D. Powers, Childrens National Health System
Laura G. Anthony, University of Colorado

Abstract

Objective: A series of studies report elevated rates of autism and autistic characteristics among gender-diverse youth seeking gender services. Although youth with the co-occurrence present with complex care needs, existing studies have focused on co-occurrence rates. Further, clinical commentaries have emphasized provider-centered interpretations of clinical needs rather than key stakeholder-driven clinical approaches. This study aimed to employ community-based participatory research methodologies to develop a key stakeholder-driven clinical group program. Method: Autistic/neurodiverse gender-diverse (A/ND-GD) youth (N = 31), parents of A/ND-GD youth (N = 46), A/ND-GD self-advocates (N = 10), and expert clinical providers (N = 10) participated in a multi-stage community-based participatory procedure. Needs assessment data were collected repeatedly over time from A/ND-GD youth and their parents as the youth interacted with one another through ongoing clinical groups, the curriculum of which was developed progressively through the iterative needs assessments. Results: Separate adolescent and parent needs assessments revealed key priorities for youth (e.g., the importance of connecting with other A/ND-GD youth and the benefit of experiencing a range of gender-diverse role models to make gender exploration and/or gender affirmation more concrete) and parents (e.g., the need for A/ND-related supports for their children as well as provision of an A/ND-friendly environment that fosters exploration of a range of gender expressions/options). Integration and translation of youth and parent priorities resulted in 11 novel clinical techniques for this population. Conclusions: With generally high acceptability ratings for each component of the group program, this study presents a community-driven clinical model to support broad care needs and preferences of A/ND-GD adolescents.