Written by Professor Garry L Warne 

Illustrations by Jocelyn Bell

Updated by the RCH Endocrinology, Gynaecology and Urology teams. 

Introduction

Some medical diagnoses are easy to talk about and some are more challenging. A diagnosis of Androgen Insensitivity Syndrome (AIS), which involves the development of the genital and reproductive system can potentially raise some challenges related to gender. How is it that a woman can be born without a womb and with testes?

For generations, people with AIS , and their parents, have struggled to understand this apparent contradiction. Many would have had no idea that there were others with the same type of body, unless the condition was in the family. Even then, discussion about a subject relating to genital development and sexual feelings may have been taboo. We are now in an age when sexuality and gender identity are openly discussed in the community.

This freedom is presenting opportunities for the community at large to be given some  information about the existence and nature of AIS. Increased understanding and acceptance of diversity / variations in sex characteristics are likely when society is better informed about them. It is important that people with AIS have access to both good information about it and adequate opportunities to discuss the complex feelings that are bound to arise as this information is being absorbed.

This book has been prepared to provide individuals with complete AIS,  and their families, with accurate medical information about this condition and guidance on how to find help. We acknowledge that AIS is a spectrum, and working on developing more resources!

Peer support is an essential part of care for individuals and their families. If you would like to connect or learn more about peer support for AIS, you can follow the below link to "IPSA" who provide intersex peer support, information and advocacy group for people born with variations in sex characteristics and their families.

  IPSA - Intersex Peer Support Australia