There is now broad acceptance amongst health professionals that children and young people should be informed about their diagnosis and treatment progressively, and in age-appropriate ways. However, it is not clear to what extent this is being provided methodically and consistently. Furthermore, young people and adults still report not having been given information, despite this being noted in records by health care professionals. What we are learning is the psychological complexity of information acquisition in areas of emotional salience. PSI International sees this as a vital issue to tackle.

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In talking with children and young people about their own bodies and potential clinical interventions, it is also important to address the dilemma of self-disclosure in social settings. Many people with a variation in sex development choose not to discuss this with others. Sometimes family members with the same hereditary condition may not know about one another, and sometimes intimate partners may know little, if anything. Intimate relationships are sometimes avoided for fear of being compelled to give explanations about the diagnosis or treatment.

 

Disclosure, shame, and secrecy are central issues in the psychosocial landscape of intersex/dsd. PSI International is committed to a reduction in stigmatisation of intersex/dsd by exploring ways to broaden public understanding, so that more choices about self-disclosure may become available to children, adults and families.