Abstract
Children with disorders of sex development (DSD) manifest at birth with malformed genitalia or later with atypical pubertal development. Those born with malformed genitalia are often diagnosed at birth. However, in resource-poor countries like India, where not all births are supervised by healthcare workers, some of these children remain undiagnosed until puberty or even later. The aim of this study was to assess the gender issues and psychosocial problems of children with DSD. Participants included 205 children with DSD (103 with 46,XX DSD and 102 with 46,XY DSD). Both the children with DSD and their parents underwent semistructured interviews by a clinical psychologist. The birth of a child with DSD was perceived as a major medical and social problem by parents from all socioeconomic strata. Mothers were distressed as many believed the DSD condition was transmitted through the mother. Children who were not diagnosed and treated during infancy or early childhood experienced considerable social discrimination not only from relatives and friends but also from medical and paramedical staff in hospitals. Several patients had been operated during infancy without an etiological diagnosis and without provision of adequate information to the parents. Some children had problems related to complications of surgery. Most teenage patients with 5α-reductase-2 deficiency reared as females presented with gender dysphoria, while children with androgen insensitivity (except for one) or with gonadal dysgenesis developed a gender identity concordant with their gender of rearing. Parents of children with DSD preferred a male gender assignment for their children (if that was possible) because of the social advantages of growing up male in a patriarchal society.
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Ammini, A. C., Gupta, R., Kapoor, A., Karak, A., Kriplani, A., Gupta, D. K., & Kucheria, K. (2002). Etiology, clinical profile, gender identity and long-term follow up of patients with ambiguous genitalia in India. Journal of Pediatric Endocrinology and Metabolism, 15, 423–430.
Coopersmith, S. (1981). Self-esteem inventories. Palo Alto, CA: Consulting Psychologists Press Inc.
Derogatis, L. R. (2000). Symptom Checklist-90-Revised. In A. J. Rush (Ed.), Handbook of psychiatric measures (pp. 81–84). Washington, DC: American Psychiatric Press.
Goodman, R., Ford, T., Simmons, H., Gatward, R., & Meltzer, H. (2003). Using the Strengths and Difficulties Questionnaire (SDQ) to screen for child psychiatric disorders in a community sample. International Review of Psychiatry, 15, 166–172. doi:10.1080/0954026021000046128.
Johnson, L. L., Bradley, S. J., Birkenfeld-Adams, A. S., Kuksis, M. A., Maing, D. M., Mitchell, J. N., & Zucker, K. J. (2004). A parent-report Gender Identity Questionnaire for Children. Archives of Sexual Behavior, 33, 105–116.
Joseph, A. A., Kulshreshtha, B., Mehta, M., & Ammini, A. C. (2011). Sex of rearing seems to exert a powerful influence on gender identity in the absence of strong hormonal influence: Report of two siblings with PAIS assigned different sex of rearing. Journal of Pediatric Endocrinology and Metabolism, 24, 1071–1075. doi:10.1515/JPEM.2011.287.
Joseph, A. A., Shabir, I., Marumadi, E., Dada, R., Ammini, A. C., & Mehta, M. (2013). Psychosexual outcomes in three siblings with partial androgen insensitivity syndrome [Letter to the Editor]: Impact of nature versus nurture. Journal of Pediatric Endocrinology and Metabolism, 26, 915–920. doi:10.1515/jpem-2013-0154.
Kucheria, K., Ammini, A. C., & Taneja, N. (1988). Cytogenetic and hormonal aspects of eunuchs (hijras). Journal of the Anatomical Society of India, 37, 105–109.
Kulshreshtha, B., Eunice, M., & Ammini, A. C. (2012). Pubertal development among girls with classical congenital adrenal hyperplasia initiated on treatment at different ages. Indian Journal of Endocrinology and Metabolism, 16, 599–603. doi:10.4103/2230-8210.98018.
Kulshreshtha, B., Marumudi, E., Khurana, M. L., Kriplani, A., Kinra, G., Gupta, D. K., … Ammini, A. C. (2008). Fertility among women with classical congenital adrenal hyperplasia: report of seven cases where treatment was started after 9 years of age. Gynecological Endocrinology, 24, 267–272. doi:10.1080/09513590801945230.
Kulshreshtha, B., Philibert, P., Eunice, M., Audran, F., Paris, F., Khurana, M. L., … Charles, S. (2009a). Phenotype, hormonal profile and genotype of subjects with partial androgen insensitivity syndrome: report of a family with four adult males and one child with disorder of sexual differentiation. Andrologia, 41, 257–263. doi:10.1111/j.1439-0272.2009.00921.x.
Kulshreshtha, B., Philibert, P., Eunice, M., Khandelwal, S. K., Mehta, M., Audran, F., … Ammini, A. C. (2009b). Apparent male gender identity in a patient with complete androgen insensitivity syndrome [Letter to the Editor]. Archives of Sexual Behavior, 38, 873–875. doi:10.1007/s10508-009-9526-2.
Lecrubier, Y., Sheehan, D. V., Weiller, E., Amorim, P., Bonora, I., Harnett Sheehan, K., … Dunbar, G. C. (1997). The Mini International Neuropsychiatric Interview (MINI): A short diagnostic structured interview: Reliability and validity according to the CIDI. European Psychiatry, 12, 224–231.
Malin, A. J. (1969). Malin’s Intelligence Scale for Indian Children (MISIC). Indian Journal of Mental Retardation, 4, 15–25.
Nanda, S. (1998). Neither man nor woman: The hijras of India (2nd ed.). Belmont, CA: Wadsworth Publishing.
Prasad, D., & Verma, S. K. (1985). PGI battery of brain dysfunctions. Agra, India: National Psychological Corporation.
Rehan, N. (2011). Genital examination of hijras. Journal of the Pakistan Medical Association, 61, 695–696.
Sheehan, D. V., Lecrubier, Y., Harnett Sheehan, K., Janavs, J., Weiller, E., Keskiner, A., … Dunbar, G. C. (1997). The validity of the Mini International Neuropsychiatric Interview (MINI) according to the SCID-P and its Reliability. European Psychiatry, 12, 232–241.
Singh, D., Deogracias, J. J., Johnson, L. L, Bradley, S. J., Kibblewhite, S. J., Owen-Anderson, A., … Zucker, K. J. (2010). The Gender Identity/Gender Dysphoria Questionnaire for Adolescents and Adults: Further validity evidence. Journal of Sex Research, 47, 49–58. doi:10.1080/00224490902898728.
Urban, W. H. (1967). The Draw-a-Person catalogue for interpretive analysis (2nd ed.). Los Angeles, CA: Western Psychological Services.
WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28, 551–558.
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Dr. Ammini passed away before this article went to press. We would like to dedicate it to her memory.
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Joseph, A.A., Kulshreshtha, B., Shabir, I. et al. Gender Issues and Related Social Stigma Affecting Patients with a Disorder of Sex Development in India. Arch Sex Behav 46, 361–367 (2017). https://doi.org/10.1007/s10508-016-0841-0
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DOI: https://doi.org/10.1007/s10508-016-0841-0