The Gender Development Scale: Screening for Gender Dysphoria or Incongruence in Youth with ASD

Thursday, May 11, 2017: 5:30 PM-7:00 PM
Golden Gate Ballroom (Marriott Marquis Hotel)
S. Goldstein1, G. L. Wallace2, L. G. Anthony3, L. Kenworthy4, A. C. Armour5, M. Knauss3 and J. F. Strang3, (1)National Institute of Child Health and Human Development, Washington, DC, (2)Department of Speech and Hearing, George Washington University, Washington, DC, (3)Children's National Health System, Washington, DC, (4)Children's National Medical Center, Rockville, DC, (5)Children's National Medical Center, Washington, DC
Background: An overrepresentation of ASD among individuals with gender dysphoria (GD) has been reported, with rates of almost 1 in 10 youth diagnosed with GD meeting full diagnostic criteria for ASD, and many others presenting with the broader ASD phenotype (de Vries et al., 2010). There is also evidence that gender-related concerns are more common among youth with ASD (Strang et al., 2014; Janssen et al., 2016). Initial clinical guidelines for supporting individuals with co-occurring ASD and GD have been developed (Strang et al., 2016), but there are no established screening methods for assessing GD in individuals with ASD. The Gender Development Scale (GDS; Strang et al., 2016) includes not only a self- and parent-report measure assessing current presentation of gender identity and gender dysphoria, but also retrospective parent-report of children’s gender presentation prior to puberty (age 4-8) to assess pre-pubertal (historical) signs of GD.

Objectives: Evaluate critical items from the self-report and parent-report versions of the GDS in cis-gender neurotypical (NT) youth, cis-gender youth with ASD without intellectual disability (ID), and gender dysphoric youth with ASD without ID. In youth with GD and ASD, evaluate pre-pubertal history, as reported by the parent, for signs of GD or gender variance.

Methods: Fifty-two youth (age 7-19) and their parents completed items from the GDS (26 cis-gender NT, 16 cis-gender with ASD, 10 gender dysphoric with ASD). Parents completed additional GDS items assessing gender characteristics prior to puberty (age 4-8).

Results: Three critical items assessing gender congruence/dysphoria showed 96.4% accuracy in categorizing youth according to GD vs. cis-gender status, with 99.14% accuracy for the self-report version alone. Among individuals with ASD and GD, there were no endorsements of gender non-binary identity (i.e., being both male and female) or agender identity (i.e., being neither male nor female), though one GD individual wished for a body that was neither male nor female. Parent-report from pre-puberty among individuals with GD and ASD indicated few signs of GD or gender nonconformity prior to puberty. Nineteen percent of youth in this study endorsed a strong wish for their body to stay a child’s body and not become a grown-up body, with no differences in rates of endorsement between cis-gender NT, cis-gender ASD, and gender dysphoric ASD groups (χ2(2)=0.77, p=.69).

Conclusions: This study found that critical items from both the self- and parent-report of a gender questionnaire (The Gender Development Scale) accurately classified GD vs. cis-gender status in youth with ASD without ID, as well as among cis-gender NT. This establishes preliminary validity for this assessment method. Gender presentation as reported by parents prior to puberty was negative for signs of GD or gender nonconformity, adding support to clinical observations that GD youth with ASD tend to present gender concerns later in development. Future studies should explore why GD presents later in development in ASD.