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Gender Development in Indonesian Children, Adolescents, and Adults with Disorders of Sex Development

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Abstract

In most Western countries, clinical management of disorders of sex development (DSD), including ambiguous genitalia, begins at diagnosis soon after birth. For many Indonesian patients born with ambiguous genitalia, limited medical treatment is available. Consequently, affected individuals are raised with ambiguous genitalia and atypical secondary sex characteristics. We investigated gender identity and gender role behavior in 118 Indonesian subjects (77 males, 41 females) with different types of DSD in comparison with 118 healthy controls matched for gender, age, and residential setting (rural, suburban, or urban). In Study 1, we report on methodological aspects of the investigation, including scale adaptation, pilot testing, and determining reliability and validity of measures. In Study 2, we report on gender development in 60 children (42 boys, 18 girls), 24 adolescents (15 boys, 9 girls), and 34 adults (19 men, 15 women) with DSD. The majority of participants with DSD never received any medical or surgical treatment prior to this study. We observed a gender change in all age groups, with the greatest incidence in adults. Among patients who changed, most changed from female to male, possessed a 46,XY karyotype, and had experienced significant masculinization during life. Gender identity confusion and cross-gender behavior was more frequently observed in children with DSD raised as girls compared to boys. Puberty and associated masculinization were related to gender problems in individuals with 46,XY DSD raised female. An integrated clinical and psychological follow-up on gender outcome is necessary prior to puberty and adulthood.

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Acknowledgments

This study was supported, in part, by Grants from the Directorate General of Higher Education, Ministry of National Education of Indonesia (DIKTI scholarship). The funding body did not play role in the study design, data analysis, or manuscript preparation and submission. We thank all participants in this study; Michael Smith (Erasmus University Rotterdam) for editing this manuscript; Dr. Saskia E. Wieringa (Department of Sociology and Anthropology, University of Amsterdam) for advice during preparation of the Indonesian version of measures utilized in this study; Nani Maharani, M.D., MSc., Muflihatul Muniroh, M.D., MSc. (CEBIOR, Faculty of Medicine, Diponegoro University), and Costrie Ganes Widayanti, MSc. (Faculty of Psychology, Diponegoro University) for arranging the interviews; Ir. Kris A. Sieradzan (Department of Medical Informatics, Erasmus MC) and Widadgo M.D., MSc. for their assistance with data entry. We gratefully acknowledge the critical linguistic review and constructive comments of Garry Warne, M.D. (Melbourne, Australia) and Amy B. Wisniewski, Ph.D. (University of Oklahoma Health Sciences Center) on an earlier version of this article.

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Authors and Affiliations

  1. Department of Clinical Psychology, Faculty of Psychology, Diponegoro University, Tembalang, Semarang, 50275, Indonesia

    Annastasia Ediati

  2. Center for Biomedical Research (CEBIOR), Faculty of Medicine, Diponegoro University, Semarang, Indonesia

    Annastasia Ediati, Achmad Zulfa Juniarto & Sultana M. H. Faradz

  3. Institute of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, The Netherlands

    Erwin Birnie

  4. Division of Endocrinology, Department of Paediatrics, Erasmus MC-University Medical Centre, Rotterdam, The Netherlands

    Stenvert L. S. Drop & Arianne B. Dessens

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  1. Annastasia Ediati
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  2. Achmad Zulfa Juniarto
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  3. Erwin Birnie
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  4. Stenvert L. S. Drop
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  5. Sultana M. H. Faradz
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  6. Arianne B. Dessens
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Correspondence to Annastasia Ediati.

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Ediati, A., Juniarto, A.Z., Birnie, E. et al. Gender Development in Indonesian Children, Adolescents, and Adults with Disorders of Sex Development. Arch Sex Behav 44, 1339–1361 (2015). https://doi.org/10.1007/s10508-015-0493-5

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