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Chapter 6 summarizes the changes to medical care in recent years. There is now a greater recognition that the projected social and psychological challenges of genital variations cannot be fixed by surgery. The first international consensus statement on intersex was published in 2006. The statement makes a number of recommendations to improve care. Controversially however, a new term disorders of sex development (and, later, differences in sex development, or DSD) was introduced to replace intersex and hermaphroditism. Biotechnological developments have been advancing rapidly. More has been learned about “normal” and “abnormal” sex development. However, parents still struggle to talk to children about their bodily variations, young people still worry about getting into relationships, childhood genital surgery is still considered the only way out of stigmatization, psychological expertise is still a low priority in specialist services and the huge potential of peer support is not fully realized.
Chapter 8 begins by pointing out the current lack of collective clarity about the role of psychological care providers (PCPs) and suggests that researchers and practitioners make collective effort to develop the role of PCPs in sex development in future. Meanwhile it outlines the psychological consultation process that is generic and familiar to most PCPs. The author provides an initial assessment template and summarizes the popular psychotherapeutic interventions. The template is visible in several of the practice vignettes in the ensuing chapters of the book. The author ends the chapter by arguing that the tertiary environment is set up for diagnostic workup and treatment and unsuitable for the kind of ongoing psychosocial input that is needed by individuals and families living in their communities. The author makes a case for PCPs in DSD centers to collaborate with peer support workers to enable nonspecialist providers in the community to contribute to ongoing support for individuals and families.
Chapter 2 begins with a brief summary of typical embryonic development of the urogenital and reproductive systems. Where the sex chromosomes, reproductive organs and the genitalia in combination do not fit the social categories of female and male, doctors and scientists used to call these physical outcomes hermaphroditism and intersex. They debated for a long time on the “true sex” of the individuals but could not agree on which of the biological sex characteristics should count as their true sex – should it be the sex chromosomes, the gonads or the genitals? Although in the age of genetics, much more is known about how the atypical features have developed. At the same time, people who are impacted by the variations are increasingly disputing medical framing of their differences. The twenty-first century was to seed a new and ongoing debate between the new medical term, differences in sex development (DSD) and intersex, which is now reclaimed by many impacted adults.
Not all sex variations are apparent at birth. Sometimes they are internal and therefore not visible, that is, children are born looking like a typical boy or girl. The child may be brought to medical attention much later, for example when puberty does not follow the expected path. Many of these care users were not told the truth about their biological variation because adults believed that the information would harm them. At the same time, the care users also noticed that they were fascinating to health professionals, who may examine them in droves. Some of them did not discover the truth about their diagnosis and the treatment until mid-life.
For children whose external genitalia look different, when surgical safety and techniques improved, it became routine to align the urogenital anatomy of newborns and young children to the assigned gender. The gender-genitalia alignment was believed to be important psychologically for child and family. Because surgeons found it easier to feminize than masculinize the genitalia, most babies with genital variations were assigned female. From the 1990s, some of these adults have spoken out, talking of too many operations, been too often examined by too many and not understanding what was happening.
Biological variations in sex development, also known as intersex, are greatly misunderstood by the wider public. This unique book discusses psychological practice in healthcare for people and families impacted by a range of 'intersex' variations. It highlights the dilemmas facing individuals and their loved ones in the social context and discusses the physical and psychological complexities of irrevocable medical interventions to approximate social norms for bodily appearance and function. It exposes the contradictions in medical management and suggests valuable theoretical and practice tools for psychosocial care providers to navigate them. Uniquely featuring theory and research informed practice vignettes, the book explores interpersonal work on the most salient psychosocial themes, ranging from grief work with impacted caretakers to sex therapy with impacted adults. An indispensable resource for working ethically, pragmatically and creatively for a variety of healthcare specialists and those affected by variations in sex development and their families and communities.
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