Schweizer K, Brunner F, Schonbucher V, Richter-Appelt H. J Couns Psychol. 2009; 56:189-201
Abstract
Individuals living with an intersex condition have not received much attention in counseling psychology, although a high need for psychosocial care is obvious. Using a mixed-methods multiple case study with qualitative and quantitative data, the authors explore coping and gender experiences in seven 46, XY intersexual persons with deficiencies of androgen biosynthesis. These were assigned female at birth. At puberty, the participants experienced unexpected physical virilization due to 5alpha-reductase-2 (n = 3) and 17beta-hydroxysteroid dehydrogenase-3 deficiency (n = 4). All 7 received medical treatment (e.g., gonadal removal, genital surgery) to stop virilization and maintain the primarily assigned female sex and gender. The cases illustrate high adjustment challenges caused by the condition itself and the medical treatment experienced. None changed to male during adolescence as reported in previous studies. Highly variable patterns of gender identification become visible with subjectivities that do not only represent a binary gender model. Adult gender identity outcome of the participants is characterized by an increased uncertainty of gender identity, high male and low female gender identity. Implications for clinical management, particularly psychological counseling, are drawn.
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Summary
Disorders of sex development (DSD) are defined as “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical” {1}. Of all DSD associated with ambiguous genitalia occurring in 46,XY persons, those attributable to an androgen biosynthesis deficiency (e.g. 5-alpha-reductase-2 [5alphaRD-2] or 17-beta-hydroxysteroid dehydrogenase-3 [17beta-HSD-3]) precipitate great challenges regarding newborn gender assignment. Reports that a significant proportion of those affected and assigned female self-reassign their gender post-pubertally have been interpreted by some as evidence of an influence of sex hormone exposure on those aspects of the brain contributing to psychosexual differentiation, i.e. gender identity, gender role, and sexual orientation {1,2}. Estimates of the rates of gender transition range from 56-63% of cases in 5alphaRD-2 and 39-64% in 17beta-HSD-3 {2}. This study’s choice of research methodology and findings is notable. Standardized questionnaires used alongside open-ended items provided participants the opportunity to describe their experiences in their own words and added complexity and nuance to gender outcomes analyses. The finding that all participants remained in their assigned female gender as adults, despite experiencing a masculinizing puberty stemming from normal activation of testicular function, diverges from many other reports. Even though all participants self-labelled as women, the study’s effective use of qualitative and quantitative (i.e. mixed) methods demonstrated that they struggled with their gender identity. Converging evidence across methods showed that feelings of being different from both men and women were universally experienced. Accordingly, expression of “gender dysphoria” with an associated wish to change gender is likely too crude a criterion for determining a person’s satisfaction with their gender assignment. Information regarding genital appearance at birth was not provided, although it is to be expected that a subset were born with an atypical genital appearance. The masculinizing puberty experienced by all was described as threatening to self-identity and caused substantial emotional distress. Accordingly, this report vividly illustrates the psychological risks associated with experiencing a contra-sexual puberty. As one index of participants’ gender identity in adolescence and young adulthood, 5 of 7 opted for clitoral reduction and/or vaginoplasty.
This report provides considerable detail regarding negative, even traumatic, recollections of this period; in part due to unfulfilled hopes that surgical procedures would resolve internal identity conflicts and unrealized expectations that enhanced romantic/sexual relations would follow. To the reader unfamiliar with the theoretical frameworks that rely on qualitative methods for data collection {3}, some features of this report may be interpreted as weaknesses: the small number of participants, the sampling strategy for recruitment, and the variable time interval between treatment experiences and participation in the study. These limitations notwithstanding, the report is successful in illustrating that stability of gender self-labeling (i.e. man or woman) can co-exist with ambivalence or uncertainty over one’s identity. Readers of this paper will not find easy solutions to the dilemma of gender assignment in patients with 46,XY DSD; however, these subjective accounts offer important insights to the evolving psychoeducational, social and emotional needs of these patients across developmental stages. The recent Consensus Statement on Management of Intersex {1} recommends a model of care for all patients with DSD that is delivered by an integrated interdisciplinary team that includes a behavioral health expert. A key role of the team is to ensure that, initially, parents and, later, patients, have a full understanding of the condition and its implications and that indicated psychosocial services, delivered by a member of the team, is available across developmental stages including smooth transition to adult care. The targeted study underscores the multiple potential benefits of introducing such a team approach.
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