General Medical Information

Family Issues in Sexual Differentiation Disorders

Sarah E. Herbert

Our culture’s discomfort regarding sexual matters makes it likely that the family of a child born with ambiguous genitalia will be anxious about disclosure of this information. The anomaly often becomes a family secret, and parents may have difficulty sharing information with the child, close relatives, or others. Individuals born with ambiguous genitals have recently begun to speak out about their experiences with these issues during childhood and adolescence. Many have described feelings of betrayal and alienation from their family because of not being told, or because they found out in unexpected or unsupportive ways. The secrecy surrounding their status at birth and the difficulty obtaining this information from parents or physicians has been most troublesome to adults who attempt to gain information about their earliest years.

Families have been placed in a bind regarding their child’s genital anomaly. Professionals tell parents that they must consistently reinforce a particular gender identity so their child will feel no ambiguity about their assigned male or female gender. In trying to carry out the physicians’ advice regarding consistent reinforcement of gender, parents may not be as open as they might otherwise have been about the circumstances surrounding their child’s genital abnormality. Parents and physicians alike have often thought they were acting in the child or adolescent’s best interest in not disclosing information, not realizing the detrimental impact this secrecy eventually might have.