Q: I have a 15-year-old grandchild with complete androgen insensitivity syndrome. I want to be supportive in every way. I need more current information on how best to be that support person when called upon.
A: I applaud your desire to understand your grandchild’s condition so that you can be there when needed.
Androgen sensitivity syndrome (AIS) is a rare complex intersex condition affecting approximately two to five individuals out of every 100,000. There are two main forms, partial and complete.
Androgens are male hormones. Those diagnosed with AIS are genetically male but due to genetic mutations, the body’s tissues are unable to use these hormones. In partial AIS, some tissues are resistant while others are not. Children born with this condition may appear male, female or have ambiguous genitalia. In some instances, nothing appears abnormal until puberty is reached when the child fails to develop as expected.
Complete AIS means that the body is totally resistant to male hormones and the child is born appearing as a normal, healthy female. Often, it isn’t until puberty that a problem is noticed, although some may have a palpable hernia with lump that is discovered to be an undescended testicle leading to earlier diagnosis. These children will grow breasts as a female, but do not menstruate and have no uterus. Often there is little pubic and underarm hair as well.
It is important to note that children with complete AIS, while genetically male, have a female gender identity, meaning they feel as if they are females, display mannerisms and behavior associated with females and are most often attracted to males. Anyone can have a gender identity disorder (also known as transgender, meaning that although they are genetically one gender, they feel as though they are the other and are physically and emotionally uncomfortable that their bodies don’t match what they’re feeling. This isn’t the same as homosexuality in which individuals are emotionally and physically attracted to members of the same gender.
There are many complications that can occur with a diagnosis of AIS, most of which are emotional and social. Infertility is certain because the testes are undescended and there is no uterus. For some, the testes may become cancerous and require surgical removal. Preventive removal may be recommended once puberty is complete because of this risk. Emotional complications are common but I am sure you can see why. Imagine growing up as a female, feeling as if you are a female, and then one day, being told that you are in fact genetically a male. It is a lot to process. Social issues can arise when others become aware of the diagnosis.
There are several online sources available to help you understand the condition and what the affected individuals may be going through. Support groups are also available. You can learn more from Boston Children’s Hospital and information and support can be found through the Intersex Society of North America.
Allow me to finish with an aside. There are many people in the world today who are unwilling to accept the differences in others, such as race, gender or sexuality and will harass those not like themselves. In my opinion, this arises from ignorance and is just plan unacceptable. Children aren’t born hating those different from themselves, instead it is passed on from generation to generation through taught behaviors. In today’s society with all the modern technologies we have, the scientific understanding we have gained, it is truly beyond my scope of understanding how so many people can hate others for something they can’t control.
