The term “disorders/differences of sex development” (DSD) refers to a diverse set of congenital conditions “in which development of chromosomal, gonadal, or anatomic sex is atypical.” These conditions are often identified prenatally or in the newborn period when atypical reproductive/sex anatomy is observed, or through genetic testing. DSD also may be identified later, when pubertal development is delayed or infertility occurs. DSD are categorized according to karyotype: sex chromosome DSD (differences in the number of sex chromosomes or sex chromosome mosaicism, e.g., Klinefelter syndrome, Turner syndrome, mixed gonadal dysgenesis); 46, XY DSD (e.g., androgen insensitivity syndrome); and 46, XX DSD (e.g., congenital adrenal hyperplasia).
Pediatric psychologists can promote positive outcomes for patients with DSD by addressing issues commonly encountered in pediatric psychology, and others that are diagnosis specific, including:
- Distress related to diagnosis and medical interventions
- Stigma associated with having a DSD and/or atypical genital anatomy
- Considerations related to gender assignment
- Shared decision-making regarding surgeries (and their controversies)
- Sharing information and educating children in a developmentally-sensitive manner about their diagnosis and its implications
- Support for parents in considering sharing information with others, including extended family and close friends
- Counseling parents, adolescents and young adults about sexual function and fertility.
- Screening for co-occurring mental health concerns
The DSD SIG is interested in (a) promoting awareness of the needs of youth with DSD and their families, (b) developing expert and consensus-driven best practice models of pediatric interdisciplinary care, (c) integrating cultural competence into care models, (d) providing a venue for information-sharing regarding ethical issues and diagnosis-specific factors impacting care, and within the larger umbrella of DSD conditions (e) identifying high priority areas for research and supporting cross-site collaborations, and (f) developing pediatric psychology training opportunities to ensure access to competent psychological care for this population.
Jennifer Hansen-Moore, Ph.D., ABPP
Nationwide Children’s Hospital/The Ohio State University College of Medicine
Amy C. Tishelman, PhD
Boston Children’s Hospital/Harvard Medical School