Psychological Aspects of the Treatment of Patients With Disorders of Sex Development

David E. Sandberg, Ph.D.; Melissa Gardner, M.A.; Peggy T. Cohen-Kettenis, Ph.D.

Disclosures

Semin Reprod Med. 2012;30(5):443-452. 

In This Article

Childhood

Major psychosocial and social-environmental aspects of DSD and its management, identified in earlier developmental stages, can re-emerge during childhood. Gender assignment and possible early reassignment will have taken place previously; however, parental questions and uncertainties may emerge if they observe their child engaging in gender-atypical play (e.g., boys playing with baby dolls or girls rough-housing). If there is a need to perform urogenital surgery beyond infancy, children require adequate preparation. The specialties of pediatric psychology[59] and child life[60] are highly useful in this context. Guidance from these members of the interdisciplinary team should be sought regarding preparation of the child and parents for genital examinations during childhood. In general, genital examinations should be kept to a minimum because of the risk that the child will recall these experiences as traumatic or contributing to a negative body image.[61–63]

Gender Reassignment

The age that healthcare provider/parent-imposed gender reassignment can take place without harming the child's gender and general psychological development remains an open question. Although it is clear from developmental psychology studies in normative samples[28] that the person's ability to cognitively identify one's gender occurs around 30 months of age, it is not precisely known when affective aspects of gender identity develop and until what age do they remain flexible. As already noted, the process of gender development in children with DSD may follow a different pathway than in children without a DSD. Accordingly, the often mentioned age limit of 18 months is still much debated.[3]

From previously described studies, it is evident that atypical gender-role behavior is not a sign of gender identity problems. Yet, parents and healthcare providers may regard gender-role behavior that is inconsistent with the gender of rearing as an indication of gender dysphoria, causing them to question whether the gender assignment decision at birth might have been incorrect. An assessment by experienced mental health providers is indicated only if there are persistent and strong indications that gender dysphoria is present. Gender reassignment should not occur without such an assessment. The Standards of Care of the World Professional Association of Transgender Health (WPATH), a professional organization in the field of gender dysphoria, is potentially useful in guiding the assessment and treatment process.[64,65]

In the case of experienced gender dysphoria, the clinical approach includes an assessment of the gender dysphoria itself as well as an assessment of the general functioning of the child and the family. As gender-atypical behavior may be more disturbing to the social environment than to the child, the clinician needs to understand what factors (in the past or at the time of referral) may have influenced the gender-variant behavior and preferences of the child. Several standardized instruments, such as cognitive tests, parent and child questionnaires, child interviews, play observations, and projective methods are available to assess understanding of the child's gender, behavior, and feelings.[66] Nearly all diagnostic tools and procedures, as well as the psychological interventions used in the management of gender identity disorder in physically typical children[67,68] are modifiable, with some caveats,[69] to gender-dysphoric children with DSD.

Information Management

Children will require explanations for multiple aspects of the DSD and associated clinical management. For instance, they may wonder why they need medication in childhood or hormone replacement at the beginning of puberty; why they have scars in their genital area; or why they have to visit the clinic and receive physical examinations more frequently than peers. If the child has not been adequately and timely informed, atypical gender-role behavior or sexual feelings (e.g., sexual attraction to same-gender peers) may create anxieties. They may incorrectly make inferences about their "true" sex. In circumstances in which clinical management of the DSD is associated with strong emotional responses, cognitive processing by the child of factual information provided is often less than optimal. The information is complex and not every child or parent is able to understand and recall what had been presented. Also, children's understanding of the DSD and its personal meaning will change with each developmental stage. This suggests that the affected child (and parents) will benefit from repeated review of the facts and their implications as the child matures. By the time they reach adulthood the children should be fully informed about their condition. Unfortunately, too often patients transition to adult care without a complete understanding of their medical condition.

Developing a plan early in the course of treatment for staged, but ultimately complete sharing of information with the child is a key aspect of optimal care.[58] The plan takes into account the developmental stage of the child and opportunities which naturally present themselves in preparation for clinic visits and the questions which children inevitably ask if they perceive openness on the part of parents. Informing the child sometimes meets with resistance from parents who mistakenly believe that concealment of details will protect the children from knowledge they consider harmful. In some cultures, disclosure may be even harder to address, as conceptualizations and values regarding gender and sexuality vary greatly between cultures (e.g.,).[23,70] Yet, from other areas in medicine, it is known that being informed about one's medical condition is associated with psychological adjustment.[54,64,70]

In comparison to children who remain uninformed, or misinformed about their condition, children who are educated in a timely manner will have better opportunities to develop adaptive coping skills, including development of a positive self-image and expectations for a fulfilling adult life despite somatic limitations (such as infertility). The requirement for older children to fully understand relevant aspects of their condition and give proper informed consent is especially important when they are required to provide assent for medical interventions.

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