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This chapter is a fictional account of several people talking about aspects of their lives that are impacted by variations in sex development at a support group meeting. In their exchanges about past, present and future medical encounters, the author draws out both the opportunities and the dilemmas presented by medicine. Through the characterizations, the author also teases out some of the most pertinent psychological themes in the field, such as how to decide about “normalizing” surgery for a child and how to talk about bodily differences in relationships. These themes are centralized in Chapters 9–14 and explored in the literature summaries and practice vignettes therein.
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.
How to talk about variations in sex development is a major theme for impacted individuals and families. This is the topic of Chapter 12. The author summarizes the research literature with caretakers and with adults about the difficulties of disclosure. Considerable criticism has been levied at health professionals for failing to role model affirming communication. For sure there are gaps in health professionals’ talk, but the biggest contributor to the difficulties is to do with the widespread misunderstanding about the biological variations. Psychological care providers are not there to put a cheerful gloss over clients’ negative expressions. However, they can be part of the favorable social condition in which a wider range of meanings about bodily differences are negotiated. In the practice vignette, the author highlights how tentative and uncertain the enabling process is, where a negative view of sex variations is still widely endorsed in the social context.
Chapter 11 of the book reviews potential psychological contributions in the highly charged process of assigning legal gender to a newborn with genital variations. Although a number of psychological theories exist for understanding gender development, it is the brain gender framework that has been singularly privileged in intersex and DSD medicine. However, the decades of research cannot contribute to the certainty professionals and caretakers seek. Psychological care providers (PCPs) have other frameworks to draw from in order to work ethically and pragmatically with families. In the practice vignette, the author envisions how a highly skilled PCP in a high-functioning DSD team could work substantially to help caretakers to cope with uncertainty and minimize the need for psychosocially motivated medical interventions. In the vignette, the psychological care path is in position before medical investigations begin. It remains highly active long after the medical and legal processes are completed. Although the vignette is built around a child diagnosed with 17β-hydroxysteroid dehydrogenase-3 deficiency, the care principles are relevant to legal binary gender assignment for children born with a range of sex development variations.
Difficulties with communication about bodily differences are strongly linked to sexual experiences. In Chapter 13, the author critiques the dominant ways of talking about sexuality in the wider society. These oppressive ideas can give rise to insecurities, self-objectification and body shame for people in general. Adults who have been medically managed are particularly vulnerable to the effects of objectification and shame. The author outlines typical components of sex therapy programs. However, rather than fix sexual problems, which can perpetuate people’s sense of inadequacy, the author suggests that psychological care providers support clients to process any trauma and develop a more relaxed and appreciative relationship with the body. This work, which requires generic therapy knowledge and skills, can be integrated with a range of specific sex therapy techniques and resources to reimagine a sexual future that focuses on bodily pleasure rather than gender performance. Although the practice vignette is built around a female couple, one of whom has partial androgen insensitivity syndrome, the care principles have wide applications for people with variations more generally.
Inconsolable distress is neither a universal nor inevitable response to inability to have biological children. In Chapter 14, the author criticizes research with clinic samples that has produced a problem-saturated account of childlessness that obscures a wide range of alternative responses. The author examines the influence of pronatalist ideology on people who are impacted by infertility including many people with sex variations. Away from the treatment context, psychological input can guide individuals, couples and groups to explore personal meaning of nonparenthood. It can facilitate service users to grieve for what is not possible, challenge feelings of deviance and shame, reengage with a range of life goals and, perhaps most important of all, recast adult identities. Through the practice vignette built around a heterosexual couple, one of whom has a late diagnosis of Klinefelter syndrome, the author teases out the difficulties of working psychologically in a treatment context, where complex existential issues and relational dynamics are compressed into the frame of pressurized treatment decisions.
Chapter 9 tackles the theme of choosing “normalizing” interventions, which applies to children and adults with variations. It explores the limits of choice regarding invasive and irrevocable “normalizing” interventions in the field of sex development. It considers the role of emotion in decision-making and the complexities of obtaining informed consent. In the practice vignette, demand for surgery by a young person (with CAH) is a foregone conclusion – a familiar scenario in DSD services and one that places the psychological care provider (PCP) in an ambiguous position. The service user also has clear psychosocial care needs. She brings a unique suite of intersecting social circumstances that place demand on the PCP to be fluid and responsive to the dynamic and challenging referral context. The PCP in the vignette does not have the answers, but it is hoped that the story opens up conversations on the theme.
Psychological care is endorsed in DSD medicine. Psychosocial research has been on the increase. But these positive moves have not given psychological practice the kind of collective focus that is enjoyed by the biomedical disciplines. However, psychological care providers have a wide variety of thinking tools and practice techniques to draw on, if to work in an ad hoc way at times. These tools and techniques do not change, but some are more useful and relevant than others for this service context. In Chapter 7, the author discusses the strengths and weaknesses of key theoretical frameworks in healthcare psychology. A major weakness of the individualistic models is their lack of capacity to address structural inequalities in psychological wellness and distress. The author introduces aspects of the Power Threat Meaning Framework and describes how to draw from its theoretical richness to think systemically about what sex variations pose to individuals and families in the social context and how they are responded to. The Framework provides the theoretical backbone for some of the practice vignettes in the final section of the book (Chapters 9–14).
In Chapter 10, the author suggests immense possibilities for psychological care providers (PCPs) to contribute to compassionate care following the birth of a child with variations (and in the antenatal period). Psychosocial research and first-person accounts inform us of caretakers’ brokenness, which is often responded to by “normalizing” the child. Here, the author suggests that PCPs work with caretakers in a grief-informed way. Grief is a language that everyone understands and compels services to privilege psychological safety as a first care principle. The practice vignette is built around an expectant mother in difficult circumstances with an unborn child with TS. However, the concept of grief is also relevant for older children and adolescents who are newly diagnosed. Indeed processing loss is integral to adjustment, whereby taken-for-granted ideas of selfhood give way to new identities.
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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