Patients and parents whose lives are affected by intersex conditions such as androgen insensitivity syndrome (AIS) have chances to influence decision making and management both in the clinical setting and in the family. The prime qualifications for this are a knowledge-base and confidence to articulate concerns and information to doctors, family, partners and friends. This chapter explores some of the psychology of being a patient or a parent under these circumstances so that clinicians can better understand their needs and idosyncrasies in relation to some medical conditions that have been subject to a great deal of ignorance, secrecy, shame and taboo.

We shall examine chronologically, from birth to adulthood, the issues that affect decision making, bringing in parental issues. The basic assumptions are (i) that the doctors have truthfully disclosed the full diagnosis, at least to the parents, (ii) that we are considering decisions made not only in the clinical setting but also in the outside life of the parents/adults concerned, (iii) that the observations relate mainly to AIS and similar conditions, and (iv) that we are considering patients at the female end of the male—female continuum since that is the main area of experience/expertise of the AIS Support Group (AISSG) and since this is a gynaecology textbook.