Intersexuality – it’s a complex term with many facets and variations. To fully understand the full nature of intersex traits, taking in this article is a must.

Intersex can be simply defined as referring to humans who possess sex characteristics that differ from the standard male and female binary. There are many variations of these differences that can be reflected in genitalia, hormones, sex chromosomes, and reproductive anatomy. While these traits are often observed and discovered at birth, they may not present until puberty.

Terminology

The full spectrum of intersex variations is broad. But it is estimated that about 1.7% of humans are born intersex.. That’s between 1 and 2 per hundred people. And there are at least 40 distinct varieties within this spectrum of intersex anatomy. Some may have both male and female traits in their sexual anatomy; some may have more predominant male or female traits; some may have a genital appearance that falls somewhere in between or a genital appearance that falls into neither.

It’s also important to note here that intersex people may have a variety of gender identities – male, female, non-binary. But intersex is not related to sexual orientation – that is who a person is attracted to. So, an intersex person can be straight, gay, bisexual, or any other orientation on the LGBTQIA+ spectrum.

Obviously, coming up with terminology to fit all of the varieties is tough, but there is some terminology that does stand. Much of it is in the form of acronyms. Let’s take a look.

Hermaphrodite

The term “hermaphrodite” refers to an animal that has both male and female reproductive anatomy. In some species, this is common because a single organism has both sets of reproductive organs. In other animals, though, it is a genetic condition in an otherwise binary species.

The origin of the word is from Greek mythology – the gods Hermes and Aphrodite had a child named Hermaphroditus who had intersex characteristics.

It is an older term used to describe intersex people, and today it is considered a slur. Please don’t use it to describe intersex people.

Klinefelter and Turner Syndromes

These both relate to chromosomal abnormalities that impact reproductive anatomy. Klinefelter syndrome is the result of men who have an extra X chromosome affecting their reproductive organs. They may also lack facial hair and have enlarged breasts, as well as be sterile.

Turner Syndrome impacts women – missing an X chromosome or having an underdeveloped one. Among other health problems, their reproductive organs may be missing or undeveloped.

It’s important to note that chromosomal abnormalities are only one cause affecting the reproductive or sexual anatomy of intersex people.

DSD

This acronym has three meanings and is used primarily in the medical community. While most intersex people are comfortable with the words differences and diverse, they take offense at the word disorders. They do not want their intersex identity to be considered a “disorder.” A study showed that 69% of people experienced negative emotions around the term, and that use of this term would cause them (81%) to pursue other healthcare options.

The word disorder pathologizes intersex people and their bodies. This attitude directly ties back to the brutal and nonconsensual practice of performing so-called corrective surgeries on the bodies of intersex folks to “fix” them – often for the comfort of others.

• Differences of sex development
• Disorders of sex development
• Diverse sex development

The Assignment Acronyms

A lot of countries don’t recognize intersex as a valid gender for birth records, driver’s licenses, passports, and any other forms of official identification. Still, some do, and the list is growing. Australia, for example, allows its intersex adults to change their gender or to remove gender designation completely. In Germany, since 2013, parents have been allowed to assign an “indeterminate sex” option on birth certificates. In various other places, individual parents in other countries have managed to opt for intersex or undetermined gender identities. And intersex advocates continue to press for change in gender assignment of what they consider outdated laws and regulations.

Now, on to the acronyms, and there are a number. Each represents the assigned gender at birth

AMAB

Assigned male at birth. External sex characteristics are identified as primarily male.

AFAB

Assigned female at birth. The external sex characteristics are identified as primarily female.

CAMAB and CAFAB

Coercive assignment as male or as female at birth. This coercion has involved intersex surgery, based upon a decision made by parents and doctors when these intersex babies were born. It was believed that intersex children would have far fewer mental health issues than if they had to grow up with ambiguous genitalia.

AIAB

Assigned intersex at birth. Rather than assigning the binary gender, identifying intersex children as just that seems to be the best way to avoid human rights violations and prevent harmful practices. Does intersex surgery still occur today? Yes. And that includes medically unnecessary surgery to force an assigned sex. But most intersex surgeries today are performed if there are medical issues that require pediatric urology intervention (e.g., a small penis with no urethra).

IAMAB/IAFAB

Incorrectly assigned as male or female at birth. Children born intersex may appear to be more male or female based on the sex anatomy that presents itself. And the sex assigned is a result of that observation. But intersexuality is a tricky thing. While external male or female sex characteristics are observable, internal intersex traits (e.g. ovarian or testicular tissue) are not.

Fortunately, today there are scans, and doctors are able to see internal reproductive anatomy to help determine dominant intersex traits, as well as hormonal and chromosomal testing. The benefit of this is not to give an assigned female or male sex on a birth certificate. The benefit is so that parents and the intersex person can plan for future medical interventions based upon the child’s wishes once they reach the age of informed consent.

For example, an intersex person may decide that they wish to identify as a man. At the onset of puberty, though, they begin to develop breasts. With adequate hormone replacement therapy, this can be controlled, preventing gender dysphoria and accompanying mental health issues.

Androgen Insensitivity Syndrome

Now suppose this child who wishes to identify as a man is in a body that does not respond to male sex hormones (androgens) that are naturally absorbed by cells and tissues before birth and throughout childhood development and puberty. He has external characteristics that are either female or a combination of male and female.

There are levels of androgen insensitivity syndrome, and that will impact his adult life, especially in terms of having regular reproductive activity and life.

Sex Chromosomes

For those of you who have forgotten the genetics part of past biology courses, here’s a recap.

There are two sex chromosomes, X and Y. When an egg is fertilized by a sperm, two chromosomes are attached. If they are XX, then the baby will be female; If they are XY chromosomes, then the baby will be male.

Sometimes, chromosome variations occur.

A would-be male child may have an extra X chromosome (XXY). In this case, female genitalia may be present. Testicles may be smaller or testicular tissue may be located inside the body. There will be lower testosterone levels and muscle mass, and enlarged breast tissue that will present at puberty.

A would-be female child may be born with a missing or at least partially missing X chromosome. This will become a medical issue, as these intersex people can have heart defects, slowed growth, and infertility. And intersex surgery or hormonal treatments to correct these conditions do come with physical health risks, including cancer.

Congenital Adrenal Hyperplasia

Today, infants are screened for congenital adrenal hyperplasia (CAH). But those who have it will present with enlarged genitals, dark skin and rugae (wrinkles) over female genitals, and even ambiguous genitalia. Congenital adrenal hyperplasia can probably be classified as a hormonal cause of intersex traits.

For children and adults, symptoms may include rapid growth and early pubic hair appearance. In the case of females, it can include no menstruation, abnormal amounts of facial and body hair, and acne.

Other complications include low levels of hormones in the adrenal glands that help regulate bodily functions and infertility.

Of course, there is plenty more terminology that is associated with intersex traits, intersex people, sexual orientation of an intersex person, and accompanying sexual function. But these terms cover the most common that are associated with the term intersex and will help non-intersex people have a much greater understanding of the general intersex traits and the individual intersex differences.

History

How far back shall we go?

We’ve already mentioned the intersex product of the union of Hermes and Aphrodite in Greek mythology – Hermaphroditus. But early Greek physicians recognized a “third sex” as existent. St. Augustine, an early Catholic theologian also acknowledged that, though God created two sexes, man and woman, there was an occasional “androgyni” within the human race. (Andro is Greek for man; Gyni is Greek for woman).

Middle Ages and Renaissance

Intersex people in history – Wikipedia

The Middle Ages and the Renaissance saw acknowledgement of intersex people but not a lot of understanding. They were referred to as hermaphrodites of congenital eunuchs (eunuchs were actually castrated males for specific purposes). Medieval medical books spoke to the condition of intersex people but little more.

During the Renaissance, there was increased interest and work in science and medicine, and there was greater interest in the biological aspects of intersex traits.

Nothing during this time translated to greater societal acceptance.

17-19th Century

Both medical and legal strides were made for intersex people during this time.

Edward Coke, an English judge recognized the right of intersex people to be theirs and to determine their assigned sex by the dominant intersex traits.

Medical professionals attempted to define intersex in biological terminology. Two terms were coined. Male pseudohermaphroditism was used to describe intersex people who had testicular tissue but either female or combined male and female intersex traits. Females who had ovarian tissue but either male or combination male and female intersex traits were termed pseudo-hermaphrodite.

Early 20th Century

In 1917 the term intersexuality was formally introduced to describe a person with intersex traits.

By the 1920s, surgeons were performing genital surgery on infants, having convinced their parents that it was best to transform those intersex bodies into male or female sex traits. This would avoid social stigma they were told. The problem was they did not take into consideration unisex traits that were internal and not known and that would present themselves upon puberty.

Mid-20th Century

During the 50s and 60s, genital surgery was still the norm. Sexual function later on was not a thought. Parents wanted their children to look “normal” and be one of the binary sex stereotypes. Atypical genitalia was just not acceptable. And if their sexual development posed problems later on, they’d deal with it. In many instances, this intersex surgery was kept secret from the child. As long as they were outwardly typically male or female, they were cool with it. Later sexual functioning was a secondary concern.

Obviously, there was no informed consent on the part of an infant. Outward sex traits were all that mattered. This, unfortunately, was horribly short-sighted.

Late 20th Century

By the 1990s, intersex support groups began to appear. Their primary purpose was to affirm that intersex rights are human rights. And no one’s human rights should be violated.

These organizations, such as the Intersex Society of North America (ISNA), began to shine a spotlight on the sex assignment surgeries performed on intersex infants, and the many issues that come with them, especially later in life. They see these actions as human rights abuses and insist that no one should face such surgery until they are they age of informed consent. Determining their sex is an individual thing for all intersex individuals, even when the choice is not to change their intersex traits. It’s time to celebrate intersex differences, and the number of supportive intersex groups continues to grow.

Today and in the Future

Intersex awareness will continue to grow. ISNA has closed its doors and has moved its work and archives to Accord Alliance to move forward.

Other resources for intersex people include:

• Human Rights Campaign (HRC): Here an intersex person will find a full guide on understanding intersex, a guide to resources, and resources for allies.
• interACT: This is an advocacy group for Intersex youth and focuses on support for them.
• LGBTQ Affairs Intersex Resource Guide: A comprehensive listing of organizations and groups that advocate for and support intersex people
• Medical News Today This website has a lot of medical literature on intersex and maintains an updated list of support groups and online forums for the intersex and those involved in the intersex movement.

Challenges for the Intersex Population Today

The fight for recognition, support, legal status, and health goes on. So, let’s take a look at these issues.

• Intersex Physical Health – health disparities abound

Health encompasses both physical and mental factors. Still, intersex surgeries to modify and alter intersex traits occur in infants, in order for parents to establish a binary gender identity for their children. While there are medical tools to determine internal intersex traits, this is still a procedure that violates the human rights of the child. And it often means that later treatment is required, something this infant never counted on. As well, some surgeries come with possible consequences – cancer risk, for example. The decision to change intersex traits belongs to those who have them and no one else.

Healthcare disparities are significant for the intersex. Many doctors do not have the expertise or experience in dealing with the specific issues of the intersex population. And many health insurance plans do not cover hormone treatments that can address intersex traits, sexual function and/or overall sexual health. And most do not cover optional intersex surgeries to change intersex traits or to correct reproductive anatomy.

All of these health disparities result in unequal healthcare for the intersex population.

• Intersex mental health issues

A nationally representative survey conducted at the University of Nevada, Las Vegas. In this study, lead researcher Dr. Jason Flatt, found some disturbing numbers.

53.6% of the survey respondents stated that their mental health was either “fair” or “poor.”

Younger intersex population members reported far more mental health issues than the older intersex population.

Over 60% stated they had depression and anxiety, and over 40% reported PTSD. And again, younger respondents reported these at a higher level than older respondents.

Close to one-third of those surveyed stated they had attempted suicide.

While this study is important, it is one of only a few conducted to date, and much more research is called for.

Suffice it to say that a number of situations – intersex surgeries, gender identity issues/confusion, problems with reproductive anatomy, dysphoria about having male or female bodies chosen for them, trying to fit into gender norms that are uncomfortable, struggles with gender identity, and social stigma – can result in a mental disorder or more.

• Intersex Legal Issues

Anyone with XX or XY chromosomes has a privileged position. They are male or female, have the “right” physical and reproductive anatomy. They have birth certificates and other legal documents that classify their gender identity as one or the other. But what about people who choose to identify as intersex? In most countries, their intersex identity is not legally recognized, and this presents a legal problem. They must incorrectly identify themselves as male or female despite their intersex traits.

A small amount of progress has been made. In 2013, Australia became the first country to recognize intersex status as a legal gender identity, by way of the Sexual Orientation, Gender Identity, and Intersex Status Act. The legislature also launched an investigation of forced surgery on intersex children in order to modify or change their intersex traits.

In 2015, Malta passed and enacted a law making it a crime to have surgery or other treatment on a minor child who could not give informed consent. This law includes a non-discrimination provision.

Since that time, a number of countries in Europe, Asia, Latin America, and Africa have followed suit, along with a number of states within the US.

Activism Around Intersex Issues of the Day

• The continuing issue of non-consensual surgeries on intersex infants/children

Parents and medical professionals continue to justify these surgeries on the basis that intersex is a disability or a type of disorder and can cause medical problems down the road. While some of the intersex variations may cause issues in the future, this is not the case with most of them. Plenty of binary sex traits can also result in medical issues, but they are not considered disorders or disabilities and are not treated until they are present.

Activists insist that intersex traits should not be changed in any way unless such surgeries are medically necessary (e.g., absence of urinary tract). Thus, they claim, many of these surgeries are wholly unnecessary and performed for the sole purpose of pushing a gender on intersex children. That is not a medical intervention but one of convenience, without any consent on the part of the intersex child. And using the term disability or deformity to justify intersex surgeries is a piece of misinformation that itself is discriminatory.

• Social stigma and discrimination

There are many intersex variations (some say close to 80), and all of them present differently. Some intersex traits are physically obvious, and a single intersex trait like this can serve to “turn off” people who see an intersex person as just too different to move in their social circle. And this is part of the reason for the results of Dr. Flatt’s study on mental health issues faced by young intersex people especially.

• Discrimination in employment and, once employed, in the workplace

Intersex people do face such discrimination if their physical traits are visible and apparent to others. They are seen as people who are not as attractive to hire and as co-workers to avoid because they are a bit “freakish.”

• Discrimination in sports.

Given the whole controversy about transgender athletes, intersex individuals are rather caught in the middle. Now that there are drug and hormone tests being given to determine actual sex of athletes in many venues, such testing can effectively eliminate intersex athletes from participating in their chosen sports.

• Discrimination and bullying in school environments

This is most difficult for intersex kids in elementary and middle schools, especially in terms of which restroom to use. This has become even more difficult at all levels given local school districts’ new rules regarding bathroom use by transgender students. Beyond bathrooms, if an intersex student begins to look “different” as they move into puberty, the bullying can become worse, and not just at school.

• Discrimination on the part of some religious groups

In the US, the Mormon, Islamic, Catholic, and evangelical churches all have strict stands against nonbinary people. While this is specifically targeted against the transgender population, intersex people fall under the nonbinary umbrella for these faiths.

Flag and Symbols

Flag

The intersex flag was created by Australian Morgan Carpenter in 2013. She is a member of the Intersex Human Rights Australia. She chose yellow and purple because they are not colors generally associated with gender identities or sexual orientations and had some history with intersex people.

The circle has become a symbol of the “wholeness and “completeness” of this population no matter what their intersex traits.

There have been some variations on this main “theme” for specific communities under the intersex umbrella, such as those who are both transgender and intersex or autistic and intersex. But the main version is that which is exhibited at all Pride events.

Symbols

The Orchid

This is a symbol used by many intersex groups, especially those with androgen insensitivity. The word orchid is derived from the Greek word “orkhis” and stands for testicle or testis.

Androgen insensitivity is a condition that affects males before they are born and also during puberty. They have one X and Y chromosome which is typical for determining sex and for genital development. But the condition means that their cells cannot respond to male hormones, known as androgens. The consequence is that they may develop external intersex traits of females or of both male and female. Determining sex, then, becomes an issue.

Chromosomes

Many intersex people have chromosomal abnormalities. Males, for example, may have XXY, an extra female chromosome. Females may also have a similar chromosomal makeup with two female chromosomes (XX) and an extra Y, or XXXY which result in a mix of genital appearances, and internal organs. Attempts to correct this in females come with possible consequences, including cancer risk and even permanent high blood pressure.

Because of chromosomal abnormalities, intersex activists and groups often use the symbols of these chromosomal differences. There are even a couple of movies titled in the names of chromosomal differences.

Am I Intersex?

Surprisingly, many intersex individuals are unaware of their status. If they have had surgeries as intersex infants, both external and sometimes internal, and/or been given a routine of hormonal treatments, they may never discover how they were born. Others don’t discover until they reach puberty when they do not develop “normal” adolescent physical characteristics or must have hormone treatments for that development.

There is no one quiz or “test” that you can take to help you determine. And because the causes and presentations are so very different, you may not have had the same experience that other intersex people have had.

Here are some common indicators:

Medical History

Obviously, if you have been told by your parents/guardians that, at birth, you had “ambiguous” genitalia (characteristics of both male and female in various combinations), then, no matter what those genitals look like today (i.e.. after surgery), you know you are intersex.

Physical Observation

If you have scarring in your genital or abdominal areas that were “explained away,” you may want to probe your parents/guardians further about the causes of these. If they are no longer around, you should consult a medical professional for some testing.

Medical Testing

If, as an adult, you are experiencing certain issues (e.g., infertility or hormonal imbalance), testing may reveal your intersex traits. There are a host of tests that can be performed:

• Chromosomal analysis that will identify genetic makeup
• Blood tests to determine levels of specific hormones
• Electrolyte tests
• Molecular testing
• MRI or ultrasound to identify which internal sex “equipment” may or may not be present

Find Advice and Support from Intersex People

If you have strong suspicions that you may be intersex, go to the “horse’s mouth.” There are so many LGBTQIA+ sites, forums, and groups now, and many intersex people are active members of these groups. Here, you can compare your experience to that of others and get some solid advice about how to live happily and successfully as intersex. Not only will you find acceptance and support in these places, but you will find it from members of all queer communities.

How to Support Intersex People

General Supportive Activities

According to HRC, there are some key things people can do to be supportive of the unisex community:

• Actively work on campaigns to destigmatize the concepts of intersex bodies. Being intersex is not a physical disorder. It is DSD (different sexual development)
• People must educate themselves on the terminology when speaking about and with intersex people. InterAct has a language guide.
• Become active in groups that speak out against discrimination and stigmatization of intersex people. This may mean being involved in politics at the local and state levels in your community as well as putting pressure on your federal representatives.
• Participate in Intersex Awareness Day on October 26 of every year.
• Do research on the intersex community and its complexity. Being better-informed means you can provide better support.

Providing Individual Support

If you have a friend, a family member, or a co-worker who is intersex, here is how to be individually supportive of them.

• If someone reveals that they are intersex, get yourself educated. Unless you understand the specifics of intersex varieties, you are in no position to talk with them about it.
• Do not ask probing questions. Let the intersex individual be in charge of these talks and reveal what they wish to.
• If you observe a fellow student or co-worker being bullied and/or discriminated against, make a point of taking the high road. Be a supportive friend by sitting with them, having lunch with them, and being as social as possible in “public” situations.
• Do not use binary language. Ask them which pronouns they prefer and use them.
• Think about joining intersex support groups – there are many online. You’ll get lots of advice about how to be an ally to the intersex person in your life.
• Honor and participate in Intersex Awareness Day with your intersex person
• If the intersex person in your life is a partner or spouse, consider getting some professional counseling help if you feel yourself struggling with it all.