A Delphi-Procedure Study of Standards of Clinical Assessment and Treatment of Individuals with Co-Occurring Gender Dysphoria and Autism Spectrum Disorders

Thursday, May 14, 2015: 11:30 AM-1:30 PM
Imperial Ballroom (Grand America Hotel)
J. F. Strang1, H. Meagher2, L. Kenworthy3 and L. G. Anthony1, (1)Center for Autism Spectrum Disorders, Children's National Medical Center, Rockville, MD, (2)Catholic University of America, Washington, DC, (3)Children’s Research Institute, Children's National Medical Center, Washington, DC
Background:   An overrepresentation of autism spectrum disorders (ASD) among individuals with gender dysphoria (GD) has been reported, with rates of almost 1 in 10 gender referrals meeting full diagnostic criteria for ASD, and many others with the broader ASD phenotype (de Vries et al., 2010). There is also evidence that gender identity issues are more common among referrals for ASD (Strang et al., 2014). Nine published case studies highlight the diagnostic and clinical complexity of these individuals, but there are no clinical guidelines for their treatment/management. A gold-standard method for developing initial clinical practice standards in an emerging field is the Delphi research procedure, which facilitates the development of clinical consensus statements, as well as identifies where current experts differ (Linstore & Turoff, 2002).   

Objectives:  To obtain a set of clinical consensus statements from those clinicians and researchers experienced in working with individuals with co-occurring ASD and GD. 

Methods:  Experts in comorbid ASD and GD were identified through a four-step procedure: 1. comprehensive internet search for individuals involved in publications and clinical services related to the comorbidity, 2. comprehensive search for clinics serving individuals with gender dysphoria, 3. a “snowball” sampling procedure to allow identified expert participants to refer other experts in the field, and 4. an assessment for inclusion in the study that evaluated publication history related to the comorbidity, clinical experience with the comorbidity, and training. Twenty-eight experts in comorbid ASD and GD were identified internationally, and 22 completed the multi-step Delphi procedure. Participants each completed an initial round of questions about the clinical management of the comorbidity. Results were then coded for themes using the NVivo qualitative data analysis computer software (QSR International, 2012). 36 clinical statements emerged, which were then evaluated and shaped using a rating system by the 22 participants. 

Results:  Participants were 45% medical doctors (37% psychiatrist, 9% endocrinologist, 5% pediatrician), 45% clinical psychologists, and 10% other clinical specialty. 42% of participants had previously published on the comorbidity. The Delphi procedure produced 28 consensus statements; for 6 items the expert panel was unable to come to consensus. The resulting Delphi statements include general principles for assessment of individuals with the comorbidity, a three-step assessment protocol, a checklist for treatment approaches (including approaches for both psychotherapy and, when appropriate, sex reassignment treatment), and identified primary risk areas. Principal themes include the need for and nature of the multidisciplinary team for working with these individuals, the need for a more extended diagnostic period in which clinical decisions unfold more slowly, and the importance of autism treatment adapted to include concrete psycho-education about gender identity and gender outcomes.

Conclusions:  The expert international panel was able to achieve consensus for preliminary guidelines in the assessment and treatment of individuals with comorbid ASD and GD. The full guidelines will be presented at the meeting with opportunities for the INSAR membership to provide their input. Next steps for the project will include the perspective of individuals with ASD and GD.