This is the second in a series of posts in which I cover the basics of a particular intersex trait. For the purposes of this blog an intersex trait is defined as a bodily characteristic or set of bodily characteristic that have been determined to not be standard for male or female. This determination can be primarily chromosomal, hormonal, gonadal, and/or genital. Some examples include Turner syndrome, Congenital Androgen Hyperplasia, and cliormegaly. In this post I will focus on Androgen Insensitivity Syndrome (AIS).
AIS is an inherited intersex condition (expect for the occasional spontaneous mutation) that occurs in approximately 1 in 20,000 live births and results in partial to complete inability of the body’s cells to respond to androgens, which are the hormones commonly associated with male physiological development. Depending on the extent of the insensitivity, AIS can present in a variety of ways. Complete Androgen Insensitivity Syndrome (CAIS) in most cases results in a 46XY karyotype, undescended or partially descended testes, a short vagina without a cervix and no uterus or fallopian tubes. In some cases infants born with CAIS do not show obvious signs of the condition until puberty and are assigned female at birth without any question. In other cases the signs of the condition are obvious from birth. During puberty those with complete CAIS develop breasts as the body converts some testosterone into estrogen. However, they do not start a menstrual cycle without a uterus. Also, due to their insensitivity to testosterone, they grow little to no armpit and pubic and do not have any acne. Partial Androgen Insensitivity (PAIS) often results in an individual with a 46XY karyotype and ambiguous genitalia that can either be described as a large clitoris or a small penis. Here it is also important to note PAIS may actually be quite common and has been suggested to be the cause of infertility in many men whose genitals are typical in appearance.
Some of the most common medical responses to AIS involve medically unnecessary surgical interventions. These procedures involve removing internal testes and/or modifying genitals to appear more male or female. Along with these surgical interventions, there is also a history of parents and medical professionals refusing to disclose an AIS diagnosis to affected individuals. As well-intentioned as these responses may be they are actually problematic for many reasons, the most obvious being the fact these surgical interventions are mostly performed on infants and children who cannot consent. While it is true removal of internal testes is advisable in some instances due to cancer risks, cases of testicular cancer before puberty are extremely rare and there is no reason why such surgeries cannot be delayed until the individual is an adult with the ability to make an informed decision. As for genital surgeries, being born with genitals deemed to be ambiguous does not pose any physical dangers in and of itself. Unless the genitals in question have formed in such a way that bodily functions like urination are disrupted and the child’s life is threatened there is no medical reason to modify an infant’s genitals. Thus the reasons behind the surgeries performed on infants and children with AIS and other intersex conditions are purely cosmetic and often rooted in cisheteropartriarchy. A good example of this is the practice of lengthening the vaginas of infants and children with CAIS. The most commonly cited reason for vaginoplasty in these cases is to enable the female-assigned infant to one day have cis/heteronormative, penetrative sex as an adult. Under this line of reasoning there is absolutely no consideration of the various ways the individual’s gender and sexuality may develop over time let alone any concern for their future sexual pleasure should the procedure fail. After all she’s going to grow up to be a married woman and it’s all about her future husband’s pleasure, right? Once again such surgeries should not be imposed on anyone. Instead they should be offered later when the person is able to make an informed decision.
Beyond the physical and mental repercussions of nonconsensual surgeries there are the psychological consequences of secrecy regarding a diagnosis of AIS. While nondisclosure is done in the interest of sparing the individual unnecessary upset and confusion the actual lived experiences of those in the AIS community indicate such secrecy is actually harmful. Most people diagnosed with AIS who were not told of their condition have reported feelings of shame and confusion upon discovering they have AIS and advise full and complete disclosure from the beginning. A prominent example of this can be found in the narrative of Georgiann Davis, who tells of her experiences with AIS, nonconsensual childhood surgeries, and nondisclosure in Contesting Intersex: The Dubious Diagnosis as part of her investigation into intersexuality, intersex rights movements, and current diagnostic nomenclature. Along with her own story Davis also includes insights from interviews she conducted with intersex people on their experiences with medical terminology and practices.
Rather than approach AIS with secrecy and nonconsensual, medically unnecessary surgeries medical professionals, families, and individuals with AIS should work together for the well-being of those diagnosed with AIS in ways that respect their bodily autonomy and humanity. This means ending the imposition of medically unnecessary surgeries on infants and children and creating supportive environments free of shame, stigma, and secrecy. Above all individuals with AIS should take the lead in these efforts, challenging abuses of medical authority as necessary and supporting one another.
Access to support groups has also proven to be helpful for many individuals with AIS and their families, especially when first adjusting to a new diagnosis. An excellent example of such a group working today is the DSD-AIS Support Group. In this case DSD stands for Differences in Sex Development as opposed to the highly medicalized Disorders of Sex Development terminology that has been highly debated within the intersex community over the past decade. The group started out as a support group for women with AIS, but recent decades has branched out into a larger support group with a mission of, “Promoting support, education, and outreach to foster healthy outcomes for adults, youth, children, and families affected by Intersex/Differences of Sex Development.” This includes not only intersex women with AIS, but also intersex men, transgender, and nonbinary people with AIS and anyone else with an intersex trait and their families. Such support groups help individuals and families realize they are not alone, find resources, and exchange information. They can also be valuable educational spaces for medical professionals and others who wish to be allies to the intersex community.
Sources and Further Reading
- Contesting Intersex: The Dubious Diagnosis Georgiann Davis