Psychosocial Adjustment of Children with DSD

Purpose: Disorders of sex development, or DSD, are medical conditions in which affected individuals experience discordance between their genetic, gonadal, and/or phenotypic sex (Hughes et al., 2006).  Anecdotal reports from parents of children with DSD suggest that these children show increased aggression and behavior problems .  They may also be at risk for internalizing disorders, such as depression and anxiety, due to low self-esteem, shame, and inability to fit in with peers.  However, very few studies have examined the psychosocial adjustment of children with DSD empirically. The goal of the current study is to determine if children with DSD are, indeed, at risk of experiencing behavioral, emotional, and social concerns by having their parents complete standardized measures of child psychosocial functioning.   

Methods: Participants were caregivers (N = 12) of children (50% male sex of rearing) ages 2-18 (M = 7.30, SD = 3.99) with DSD.  Diagnoses included Congenital Adrenal Hyperplasia (CAH; 66%), Complete Adrenal Insensitivity Syndrome (CAIS; 16.7%) and 46,XY DSD of unknown cause (16.7%).  Most of the children (58.3%) had received genital surgery. With regard to race and ethnicity, the majority of participants self-identified as Caucasian (66.7%), 8.3% self-identified as African American, 16.7% as Native American, and 8.3% as Asian American.  Parent participants completed measures of child behavior, including the Behavioral Assessment System for Children Parent Report Scale (BASC-PRS) and Vanderbilt ADHD Diagnostic Parent Rating Scale (VADPRS). 

Results: Results of the VADPRS were examined for caseness using the clinical cutoff scores defined by the authors (Wolraich et al., 2003).  With regard to ADHD clinical cutoff scores, 36.4% of the sample met caseness for ADHD (9.1% inattentive type, 16.6% hyperactive type, 9.1% combined type), and 75% of those children were raised female.  The majority of the sample (54.5%) met clinical cutoff criteria for Oppositional Defiant Disorder (ODD).  Further, 66.7% of those children were raised female. Independent samples t-tests were conducted to compare children with male and female sex of rearing on externalizing and internalizing problems as well as overall behavior problems and adaptive functioning.  There was a trend for children reared female (M = 57.33, SD = 13.49) to exhibit greater externalizing symptoms than children reared male (M = 45.67, SD = 6.98), t (10) = -1.88, p = .089.  There was another trend for   children reared female (M = 57.83, SD = 13.01) to exhibit more behavior problems than children reared male (M = 45.17, SD = 9.60), t (10) = -1.92, p = .084.

Conclusion: This preliminary work suggests that children with DSD may be at risk for exhibiting significant inattentive, hyperactive, and oppositional behaviors.  Female children with DSD may be at a particular risk for exhibiting externalizing behaviors and other problem behaviors at greater rates than those who have been raised male.