AIS is an intersex variation found in males who are resistant to the effects of male sex hormones. Sometimes symptoms may not manifest until puberty, and they may not always need treatment.
Humans are diverse in many ways, especially when it comes to traits and characteristics like sex, gender, and sexual orientation. Not only are there plenty of variations in human gender and sexuality, but there are also natural variations in human sex development — like intersex traits, for example.
Androgen insensitivity syndrome, or AIS, is a variation of sex development that causes intersex traits in males. AIS can cause changes in the way a person’s external genitals appear, as well as changes to one’s internal reproductive organs.
AIS, formerly referred to as testicular feminization syndrome, is a developmental condition that causes variations in a person’s sexual or reproductive anatomy.
In AIS, people who are genetically male — meaning they have one X chromosome and one Y chromosome — are resistant to the effects of androgens, or male sex hormones.
Because their bodies do not respond to these sex hormones, they do not have the typical development of external male genitalia. Instead, they may develop either female external genitalia, underdeveloped male external genitalia, or infertility. As a result, they may be assigned a variety of genders at birth.
Complete androgen insensitivity syndrome (CAIS) and partial androgen insensitivity syndrome (PAIS) are the two primary forms of AIS. According to the
Complete androgen insensitivity syndrome (CAIS)
CAIS causes the development of typical female external genitalia, which includes what we refer to as the vulva. However, in CAIS, there’s no development of female internal genitalia, such as the ovaries, fallopian tubes, and uterus.
Partial androgen insensitivity syndrome (PAIS)
PAIS often causes the development of ambiguous external genitalia, meaning the genitalia is not distinguishable as either female or male. Some people with PAIS may have genitals that appear predominantly female, while others might have genitalia that appears primarily male.
A third type of AIS, called mild androgen insensitivity syndrome (MAIS), can cause a person to have typical male external genitalia. However, the primary symptom of MAIS is infertility.
CAIS often remains undiagnosed until puberty. This is when symptoms typically appear as the result of absent or underdeveloped reproductive organs.
Symptoms of CAIS may include:
- no menstrual periods
- lack of pubic hair
- lack of armpit hair
- taller height than usual
PAIS is often more easily distinguishable because of differences in the appearance of the external genitals at birth. Symptoms of PAIS might include:
- abnormally large clitoris
- fused labia
- undescended testes
- underdeveloped penis
- changes in the location of the urethra
- enlarged breasts (gynecomastia) in puberty
- moderate pubic hair
- lack of facial or body hair
While the most common symptom of MAIS is infertility, other symptoms of the condition may include:
- enlarged breasts in puberty
- smaller penis
- lack of facial or body hair
Celebrities with AIS
You may feel isolated if you have AIS since it’s relatively rare. But you’re not alone — multiple public figures have this condition.
In 2017, supermodel Hanne Gaby Odiele spoke about having AIS in a YouTube video for interACT Advocates for Intersex Youth, an advocacy organization for children with intersex traits. “Hi, I’m Hanne, and I’m excited to let the world know I’m intersex,” she shared in the video.
Other public figures with AIS include:
- Sean Saifa Wall
- Caster Semanya
- Annet Negesa
- María José Martίnez-Patiño
- Eden Atwood
- Sarah Gronert
“Stigma” describes the negative attitude or discrimination toward people with specific characteristics. Stigma affects many members of society because of characteristics such as race, ethnicity, religion, sex, gender, and more.
People with AIS and other intersex conditions often face severe social stigma because of their conditions. Stigma against intersex people arises not only from of lack of knowledge about intersex conditions but also from harmful sexual and gender stereotypes.
According to researchers, factors such as social and healthcare stigma may have a large impact on these conditions in people who are intersex.
If you’re finding it difficult to access adequate healthcare as an intersex person, the organization InterConnect works to help intersex people network and access resources. InterACT is a similar group that works to advocate for intersex youth.
Generally, the consensus is that treatment for AIS should only begin after puberty. Waiting to treat AIS until puberty not only allows the body to undergo the physical effects of puberty but also allows the person to make their own informed decisions regarding their treatment.
Intersex people who do choose treatment for AIS may decide on any number of approaches to fit their own preferences, such as:
- hormone therapy with estrogen or testosterone
- surgery to remove undescended testicles (gonadectomy)
- surgery to remove extra breast tissue
- surgery to alter or remove male or female external genitalia
Although there are many treatments that someone with AIS may choose, ultimately, the decision to undergo treatment is always something a person should decide for themselves.
Living with AIS
Human sex and gender are diverse. For sexual and gender diverse populations, it’s important to uplift this diversity and break down the stigma that people in these populations face.
By breaking down the stigma, we can help ensure that everyone — no matter their sex or gender — can live the life they want to live.
If you have AIS or another intersex condition and are looking for advocacy and support from others in the intersex community, there are resources to support you:
- InterACT has a great resource for finding intersex support and advocacy groups near you.
- The Intersex Justice Project works to empower intersex People of Color to make institutional changes that will ensure better healthcare standards.
- InterConnect hosts an educational network to help intersex people connect online and in person.
If you still have questions about what AIS is or just want to know more about the condition, here are a few things to keep in mind.
Is AIS the same as intersex?
“Intersex” is an umbrella term for a number of conditions that can cause a person to have nontypical sexual or reproductive anatomy.
Androgen insensitivity syndrome (AIS) is an intersex condition in which people who are genetically male experience variations in their sexual and reproductive organs.
So, while all people with AIS are intersex, not all intersex people have AIS.
What is the main cause of AIS?
AIS is an inherited condition that results from androgen receptor gene mutations. These genetic mutations prevent the body from using androgen hormones the way it typically would, which causes sexual or reproductive changes.
Are people with AIS infertile?
It’s extremely common for people with AIS to experience fertility concerns.
However, these concerns can result from different causes, depending on the type of AIS. For example, people with CAIS experience infertility because they lack the reproductive organs to facilitate pregnancy. People with MAIS usually experience fertility issues because of impaired sperm production.
Can a male be born with female hormones and vice versa?
Sex hormones play an important role in the human body, both reproductively and nonreproductively. As a result, all humans naturally produce both androgens (male sex hormones) and estrogens (female sex hormones), regardless of their sex.
Some intersex people (and non-intersex people) may have an atypical range of these sex hormones naturally occurring in their bodies.
How do I know if I am intersex?
“Intersex” is a term used to describe a person who is born with variations in their reproductive or sexual anatomy. Sometimes, this can look like changes in a person’s genitalia. Other times, it may appear as changes in someone’s fertility.
Physical examinations and genetic testing are two of the primary ways to determine whether a person is intersex.
If you feel that you may be having some symptoms of being intersex and don’t feel comfortable discussing it with your doctor, click here to learn more about finding a supportive healthcare professional.
Androgen insensitivity syndrome (AIS) only affects a small amount of the population. However, for people with the condition, the impact can be significant.
Not only does AIS affect a person physically, but the social and medical stigma surrounding the condition can also have a huge impact as well.
While this condition can result in infertility, AIS is not a life threatening condition. You can manage AIS with hormone therapy and other treatment options.
One of the most important steps we can take to help break down the stigma of conditions like AIS is to educate ourselves on the diversity of human sex, gender, and sexuality.
By listening to the stories of people with AIS and other intersex conditions, we can continue to improve the lives of people in sexual and gender-diverse populations.