You may have heard the term “intersex” when talking about gender or the LGBTQIA+ community. But what does being intersex mean and how can you support intersex people? Here’s what you should know.
What Does Intersex Mean?
Intersex is one of the general terms for individuals born with external genital anatomy that doesn’t fit the typical patterns of “boy” or “girl.” An enlarged clitoris is one example. They also may have a discrepancy between the external genitals (a penis or clitoris) and their internal genitals (testes or ovaries).
Although many think of intersex as an inborn condition, some people with intersex conditions are not immediately obvious at birth. Sometimes a person discovers their intersex condition at puberty or later into adulthood. Although rare, some people live their entire lives without knowing they have an intersex variation.
Though it’s hard to know exactly how many people are intersex, estimates suggest about 1 to 2 in 4,000 people born in the U.S. are intersex.
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What Does Intersex Condition Look Like?
There are multiple ways of being intersex or having an intersex condition. Some intersex people have characteristics of both ovarian and testicular tissue in their gonads. Some intersex people have external genitals that don’t resemble typical “boy” or “girl” sex organs.
Another intersex person may have been born appearing female based on their external genitals’ appearance but have mostly male-typical anatomy internally. Some individuals have an atypical genital appearance with normal internal gonadal (ovary or testis) development. A person also may have been born with mosaic genetics — meaning they have two or more genetically different sets of cells in their body. Some of their cells may have XX chromosomes, and some may have XY chromosomes, combining both male and female chromosomes in one person.
The symptoms associated with intersex conditions may include:
- Atypical genital appearance at birth.
- Micropenis.
- Hypospadias.
- Labial fusion.
- An enlarged clitoris.
- Delayed or absent puberty.
- Unexpected changes at puberty, such as typical male puberty in a girl.
- Undescended testes.
- Groin masses (that are possibly testes).
Intersex at Birth
For infants with atypical genitalia, their parents and a team of doctors including a pediatric endocrinologist, pediatric urologist, geneticist, and behavioral health professionals review the infant’s physical findings and laboratory results. Through shared decision-making, parents and the physicians choose a legal sex or “sex of rearing” for the infant. Usually, the child’s gender identity matches the “sex of rearing.” However, just as with non-intersex people, gender identity may differ from “sex of rearing.”
In some instances, people who are intersex benefit from hormone treatment for pubertal development when they achieve a pubertal age.
But being intersex is not a medical problem — it is a naturally occurring variation in humans.
Activism for and by intersex people has led to changes in cultural attitudes toward how to treat intersex conditions. Today, more and more people believe young children who are born intersex should avoid some medical interventions and surgery. Instead, intersex people should decide for themselves when they are older if they want surgery and the specific details of their treatment.
Treatment for Intersex Conditions
Ideally, a team of health care providers with expertise in intersex conditions works to understand and treat someone who is intersex. It is important to consider the many factors that affect the shared decision-making process to choose the most appropriate “sex of rearing.”
Chromosomal, neural, hormonal, psychological, and behavioral factors can influence gender identity and, thereby, influence an intersex person’s preferred gender. Many experts now urge delaying definitive surgery as long as the intersex person is healthy and including the person in their own sex and gender decision-making.
Supporting Someone Who Is Intersex
If you know someone who is intersex, the best thing you can do is love and accept them for who they are. It’s important to show support and advocate for your loved ones who may feel that they do not fit in with the conventional binary sexes and genders in today’s society. If you notice that your child has atypical genitalia or differences in sexual development and could be intersex, talk with your health care provider.
Another helpful tool is support groups, such as InterConnect, dsdfamilies, InterACT, and the Association for X and Y Chromosome Variations (AXYS).