The intersex kids are all right? Diagnosis disclosure and the experiences of intersex youth

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Sociological Studies of Children and Youth



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Purpose: Historically, it has been common practice for doctors and parents to withhold the diagnosis from their minor intersex patients. This study seeks to integrate intersex youth experiences into the growing body of literature on diagnosis disclosure for intersex patients. Methodology/approach: Using gender structure theory as a model, 16 intersex youth were given in-depth surveys regarding their experiences with their intersex identity in individual, interactional, and institutional contexts. Findings: Participants more positively experience intersex than the earlier generations of intersex people. They were not deeply troubled by their diagnosis as doctors have historically feared, and they are open about their diagnosis with their non-intersex peers and teachers. They also find peer support valuable. Research limitations/implications: Data was collected from a single event and cannot represent all intersex youth. Future research must continue to engage with intersex youth experiences both inside of and beyond activist and support group networks. Practical implications: These findings are strong exploratory evidence for the importance of diagnosis disclosure for intersex youth. Policies of withholding intersex diagnoses in clinical and familial contexts should be reevaluated in light of the experiences of intersex youth. Social implications: Diagnosis disclosure for intersex youth creates the potential for increased medical decision-making participation and increased capacity for activism and community building around intersex issues. Originality/value: Our results encourage future studies that center the experiences of intersex youth, for we conclude that theorizing the lived experiences of intersex people is incomplete without their perspectives. © Copyright 2018 by Emerald Publishing Limited.



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