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INTERSEX VARIATION

Source: https://www.healthdirect.gov.au/intersex-variation

Key facts

  • People born with ‘intersex variations’ have characteristics that don’t fit the typical definition of a female or male body.
  • Intersex variation can be physical, hormonal or chromosome-related.
  • Intersex variation occurs in an estimated 1 in every 100 births.
  • Surgery for intersex variation is not recommended until a child is old enough to make an informed decision for themselves.

What does ‘intersex’ mean?

People born with intersex variations have physical characteristics that don’t fit the usual definition of a female or male body.

The term ‘intersex’ refers to a wide spectrum of variations to genitals, hormones, chromosomes and/or reproductive organs.

Some people with intersex variations may, for example, have typical sexual characteristics of a female on the outside, but mostly male-typical anatomy on the inside. A person might be born without a uterus, or with a micropenis. A person’s genitals might be ambiguous (‘in between’ the typical features of a male and female). These are just a few examples.

Intersex variation can also include ‘mosaic genetics’, which means a person has cells that have XX (female) chromosomes as well as XY (male) chromosomes. Or, they might have an atypical combination of chromosomes, such as XXY.

Some genetic conditions involve intersex anatomy, including Klinefelter syndrome and Turner syndrome.

See more intersex conditions in medical terms.

How common is intersex variation?

It’s difficult to say how prevalent intersex variations are since medical professionals don’t always agree on what counts as intersex. Also, many people are born with variations that don’t show up until puberty or adulthood.

However, intersex variation is a natural biological event that has been estimated to occur in about 1 in every 100 births.

What causes intersex variation?

In the first few weeks after conception, genitals in a fetus develop in the same way, regardless of whether the baby is a male or female. At week 7, the genitals start to develop in line with the sex of the fetus, under the influence of hormones.

An imbalance of hormones, or an inability of the fetus to respond to the hormones, can result in an intersex variation.

How is gender assigned in people with intersex variation?

It is recommended that a child be assigned a gender soon after birth, based on the gender they are most likely to identify with as they grow up. This does not involve surgery and is not to be confused with gender confirmation surgery (previously known as ‘gender reassignment’ ).

If you’re a parent of an intersex child, it’s OK to delay announcing the gender and name of your child until you are ready. For more information and support, visit Intersex Human Rights Australia.

Does intersex variation need treatment?

Being intersex is not a health issue in itself and is considered a normal biological event.

Unless a person needs urgent medical attention after birth or treatment for specific health concerns related to intersex variation, such as infertility, medical intervention is not normally necessary.

Surgery for intersex variation is not recommended (or even necessary) until a child is old enough to make an informed decision for themselves.

Children and adults with intersex variation, and their parents, may benefit from counselling and support.

Are people with intersex variation transgender?

Intersex variation is not the same as transgender, which is where a person identifies as a gender that is different from the biological sex they were assigned at birth.

An intersex person may identify as female, male or neither, straight, gay, lesbian, bisexual or asexual.

However, Australian research shows that people with intersex variation are more likely to be non-heterosexual than people in the general population. About half of people with intersex variation are heterosexual (straight).

Resources, Support & Sources

Resources and support

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Learn more here about the development and quality assurance of healthdirect content.

Last reviewed: December 2019

FAQ: WHAT IS INTERSEX?

Source: https://interactadvocates.org/faq/

What is the definition of intersex?

The I in LGBTQIA+ stands for “intersex.”

The intersex flag, created in 2013 by Morgan Carpenter of Intersex Human Rights Australia.

Intersex is an umbrella term for differences in sex traits or reproductive anatomy. Intersex people are born with these differences or develop them in childhood. There are many possible differences in genitalia, hormones, internal anatomy, or chromosomes, compared to the usual two ways that human bodies develop.

Some intersex traits are noticed at birth. Others don’t show up until puberty or later in life. Intersex people often face shame—or are forced or coerced into changing their bodies, usually at a very young age. Most surgeries to change intersex traits happen in infancy.

The word intersex also invokes a community. Intersex people are diverse, coming from all socioeconomic backgrounds, races, ethnicities, genders and orientations, faiths, and political ideologies. We are united by

  1. our experiences living with variations in our sex traits,
  2. the belief that these differences are a natural part of human diversity,
  3. the idea that people deserve their own choices about their own bodies.
Is intersex the same thing as being a “hermaphrodite?”

No. “Hermaphrodite” should never be used to describe an intersex person. Some intersex people have reclaimed this word for themselves, but it is usually considered a slur. There are many ways to have an intersex body, but it is not possible for one person to have both a fully developed penis and vagina.

The “h word” comes from mythology. It might suggest that intersex people are monsters, or not of this world. Many intersex people still see this slur used in their medical records.

Is intersex the same thing as “Disorder of Sex Development?”

“Disorder” or “difference of sex development” (DSD) is still a common medical term for intersex traits. Many intersex people reject the term “DSD” because it supports the idea that their bodies are wrong, or up to doctors to “fix.” Advocates in the United States often bring up the fact that until 1973, being gay was considered a mental disorder. Many natural human differences have been framed as medical problems, until communities fought for acceptance.

interACT generally does not use the term DSD. See interACT’s statement on DSD terminology. Intersex Greece accordingly, generally avoids the use of the term DSD, or use it as “Divergence of sex development”. Most preferably we use “Variations of Sex Development (VSD)” or “Variations of Sex Characteristics”.

How common is intersex?

How many intersex people are born each year? What are the statistics? Even in countries where most births happen in hospitals, these are hard questions to answer. This is largely because no one is required to track this information. But we do know that being intersex is very common.

About 1.7% of people are born intersex. (Compare that to a ~0.3% chance of having identical twins!) 1 in 2,000 babies (0.05% of humans) are born with genital differences that a doctor might suggest changing with unnecessary surgery.

These estimates are based on work by Dr. Anne Fausto-Sterling, who reviewed medical literature from 1955-1998. (Sexing the Body: Gender Politics and the Construction of Sexuality, 2000)

What causes intersex?

Most intersex traits are random, although some do run in families. To be technically specific, some reasons why intersex traits might develop include:

  • translocation or deletion of the SRY (“Sex-determining Region Y”) gene,
  • variations in the AR (“Androgen Receptor”) gene, an enzyme deficiency leading to increased androgen production, and
  • exogenous hormone use during pregnancy.

There’s a long history of abuse in attempts to prevent or “cure” intersex differences. “Why” is a very common question when it comes to human difference. Science is always looking for something to explain natural variation: a gay gene, transgender brain difference, cause of autism, etc. But as intersex people know, “why” can be a very dangerous question. When differences can be seen or measured on bodies, they can be changed. Surgeries to change intersex traits often happen at a young age, without a person’s knowledge or consent.

What is intersex surgery?

interACT Youth member Banti’s graphic from the #MyIntersexBody campaign, educating the public about infant intersex surgery.

Intersex surgeries are non-lifesaving procedures to change natural variations in genital appearance or reproductive anatomy. This is connected to ideas about gender and sexuality, and what “normal” looks like.

Intersex surgeries include

  • “reducing” or “repositioning” a clitoris (sometimes called clitoroplasty, or clitoral reduction or recession),
  • creating or altering a vagina (vaginoplasty),
  • moving a urethra that already works (hypospadias repair), and
  • removing the organs that would make sex hormones (gonadectomy).

Infant intersex surgeries often come with serious lifelong emotional and physical consequences, high complication rates, and reduced sexual function. When done without the individual’s informed consent, the United Nations considers these surgeries as human rights violations.

Most intersex surgeries are done when a child is under 2 years old. Surgeries to change intersex traits are often offered to parents, and considered acceptable by some doctors, when a child is very young. This means that people are being denied important choices about their own bodies—choices that can affect fertility, sexual function, and emotional well-being forever.

Some kids may grow up and want to change their bodies, or be glad that their bodies were changed. Many other kids and adults live with incredible pain and trauma because these choices were made for them. When we act early, we never know who will feel which way. Waiting is the best way to avoid irreversible harm.

All parents love their children, and only want what is best for them. Surgeries to change genital appearance may also be wrongly framed by a doctor as an emergency or necessity. Many parents are never told about the high risks of these surgeries, never connected to other families or affected adults, and never told that simply waiting is an option.

interACT is dedicated to supporting all parents and all intersex people without judgement. Intersex Greece is also dedicated to supporting all parents and all intersex people without judgement.

How many intersex surgeries happen each year? Are there statistics on intersex surgery?

One intersex surgery without an individual’s consent is one too many.

As of 2021, no U.S. hospitals besides Lurie Children’s of Chicago and Boston Children’s have said that they don’t perform infant genital surgeries. Statistics are difficult to track, because U.S. hospitals are not required to report this information. However, as Kyle Knight, a Human Rights Watch researcher, told BuzzFeed in a 2020 article, “evidence of the rate of [infant intersex] surgeries and the hospitals performing them is hiding in plain sight.”

[Knight] cited a 2016 report published in the Journal of Pediatric Urology that found that 35 out of 37 parents of intersex children had “opted for cosmetic surgery on their children.” A 2017 paper in the Journal of Urology reported nearly identical rates of operations.

Are there any laws about intersex surgery? Is intersex surgery legal?

Infant intersex surgeries violate principles of informed consent, bodily autonomy, and self-determination. They may also be prohibited by female genital cutting laws and regulations against forced sterilization. Even still, some doctors claim parental consent is enough to change the appearance or function of an intersex infant’s genitalia, including cosmetic alterations to the clitoris.

Some countries are taking steps to end infant intersex surgery. For example, the country of Malta and the Indian state of Tamil Nadu explicitly prohibit intersex surgeries without the individual’s informed consent. In 2019, the European Parliament passed a resolution calling on all member states to end surgeries. Portugal, France, and Uruguay have each passed laws to protect intersex people, but which may still stop short of pausing non-consensual surgeries.

Many medical organizations agree that intersex people must be able to make decisions about their bodies, including the American Academy of Family Physicians, GLMA: Health Professional Advancing LGBTQ Equality, the American Counseling Association, and two state-level medical societies (Massachusetts and Michigan).

In the United States, at least 5 states have seen bills to prohibit infant intersex surgery. None have passed yet. In 2018 California passed a non-binding resolution, SCR-110, which was the first successful piece of U.S. legislation to acknowledge intersex human rights violations and harm. Most legislation that interACT sponsors would delay unnecessary medical intervention, including surgeries, to give people choices about their own bodies. If you’d like to help and receive updates, you can sign up for email alerts.

Intersex Greece, since 2018, is demanding from the Greek State to adapt bills to prohibit infant intersex surgery. None have passed yet.

What does intersex look like?

There is no way to “look” intersex. Every person is different. There are over 40 medical terms for the different ways sex anatomy might develop. Here are a few examples, and their common traits:

Medical Term Chromosomes External Internal Puberty
Complete Androgen Insensitivity XY Vulva, clitoris Testes, no uterus, sometimes partial vagina, or complete vagina If testes are left alone, body goes through puberty via converting testosterone into estrogen
Partial Androgen Insensitivity XY Vulva and visibly large clitoris, or other  differences Testes, no uterus, varies If testes are left alone, body has varying levels of response to testosterone
Congenital Adrenal Hyperplasia XX Vulva (labia may be fused), often visibly large clitoris Ovaries, uterus, sometimes partial vagina or complete vagina May be early, higher testosterone can lead to features such as facial hair, changed fat distribution
Swyer’s XY Vulva, clitoris Streak gonads, uterus, sometimes partial vagina or complete vagina No puberty because streak gonads do not produce any hormones
Klinefelter’s XXY Penis, small testicles May have low sperm count Low T may cause breast development or other atypical features, may be very tall
Hypospadias Varies by cause (often XY) Penis (with urethral opening somewhere other than tip) and testicles; or small penis (with urethra near base or perineum) and open labioscrotal folds; or other differences Varies by cause (often typical testosterone puberty)


If you’re asking about intersex genitalia—and please don’t ask real people invasive personal questions—there is no standard answer.

Like all human body parts, genitals come in all shapes and sizes. All genital tissues are homologous, meaning that two things share the same origin. For example, the clitoris and penis are homologous parts when a baby develops. With certain cues, the tissue will grow larger to become a penis. Without them, it will remain the smaller clitoris. Some intersex people will have a size that is naturally inbetween. What some people refer to as a “micropenis” is also related to this spectrum.

No human can develop both a complete penis and vagina. For more information on intersex bodies, see our definitions page.

See more intersex conditions in medical terms.

What medical conditions are considered intersex?

As the Intersex Society of North America wrote over 20 years ago:

Nature doesn’t decide where the category of “male” ends and the category of “intersex” begins, or where the category of “intersex” ends and the category of “female” begins. Humans decide.

Intersex traits show that trying to sort all human bodies into two categories is not simple. When is a difference big enough to “count” as intersex? Who gets to decide? Historically, doctors were given authority—but their decisions were biased toward surgery.

Consider the case of a baby born with a visibly large clitoris. Currently, identifying a particular intersex trait might be a cue for doctors to offer clitoral reduction surgery to the child’s family. Public attitudes are quickly shifting. Regardless of how the underlying cause of an intersex difference is labeled, many in medicine agree that intersex surgeries must be chosen by the individual.

In response, some doctors are now arguing that some of the most common causes of differences like a large clitoris are “not intersex,” in order to continue offering surgeries. Terminology and classification may shift, but individuals’ rights to make choices about their own bodies still apply.

Is an intersex baby healthy?

Raising Rosie, by Eric and Stephani Lohman, is a memoir and parenting guide. The Lohmans felt pressured to agree to unnecessary clitoral and vaginal surgery for their child.

The short answer: yes! Intersex differences in and of themselves (for example, differences in genital appearance) are perfectly healthy and natural. Surgery is generally only urgently necessary if an infant can’t pee, and that is very rare! Everything else can wait.

Intersex traits are natural human variations, not disorders. The intersex movement wants this understanding. This is similar to the way that LGB and T people have fought against being seen as mentally “disordered.” While intersex traits are nothing to be ashamed of, there are sometimes other accompanying issues to keep in mind.

Some intersex variations come with issues making or regulating hormones. Infants born with Congenital Adrenal Hyperplasia (CAH) often have a visibly larger clitoris. CAH also causes life-threatening issues related to how the body makes and responds to stress hormones. Surgery to reduce a clitoris or create a vagina will never address the separate life-threatening hormone issues. While genital surgery must be an individual’s choice, the hormone management issues associated with CAH must be taken very seriously.

In some cases, intersex gonads may carry real cancer risk. The actual risk level varies by medical diagnosis. Cancer risk in intersex gonads is generally not as high as some doctors used to think. For example, streak gonads (tissue that did not develop into ovaries or testes) have a relatively higher risk of malignancy and may need to be removed. By contrast, we now know that internal testes in individuals with Androgen Insensitivity are much lower risk, and can be watched and kept in the body.

If a person’s ovaries or testes are removed, or if they are born without organs that make sex hormones, they will not go through puberty on their own. A lack of sex hormones affects many functions of the body. It is especially important to think about bone health. Intersex people without gonads who don’t get adequate hormone replacement therapy may be at risk for osteopoenia as early as in their 20’s.

Above all, many health problems are the direct result of unnecessary intersex surgeries. Surgery creates scar tissue. Scar tissue affects appearance, sexual function, and even fertility, as it can impact being able to have penetrative sex. Removing ovaries or testes prevents a natural puberty. It also makes a person permanently dependent on external hormones. Infant clitoral surgeries are proven to reduce sexual sensation. Surgeries to create a vagina or move a hypospadic urethra are similarly invasive, with very high complication rates.

Some infant intersex surgeries increase the lifelong risk of UTIs. Many people require multiple surgeries to feel relief from issues caused by their first infant surgery. These are highly personal decisions best left up to the individual.

How do I know if I’m intersex?

Intersex advocates Sean Saifa Wall, Pidgeon Pagonis, Emily Quinn, and Alice Alvarez created an iconic Buzzfeed video about their experiences.

Could a person be intersex without knowing it? Without a medical diagnosis? Maybe. It has certainly happened before. These are the most common ways for a person to notice that their body is different:

  1. At birth, when another person sees genital differences;
  2. At puberty, when changes happen too early, in unexpected ways, or not at all;
  3. In adulthood, when infertility or other problems reveal internal differences;
  4. In adulthood, when learning that adults covered up childhood medical interventions.

Most intersex people can point to recognizable patterns in their bodies and social experiences. These patterns generally hold up across different groups of intersex people, and across medical terms for different intersex variations.

Most intersex people have been shamed because their genitals or reproductive anatomy are different.Many, but not all, experience medical pressure to change their bodies. Often this pressure starts with doctors offering parents surgeries or hormone treatments for their children.

Not all intersex people have genital differences. Not all intersex people have medical diagnoses or records. (And suggesting that they should ignores the fact that intersex people have been around much longer than the medical industry we know today!)

A person will generally know if they have intersex traits. The clues are in bodies and past experiences, whether or not those experiences are medical. However, many people who do have differences in their sex traits may never hear the word intersex, or may not know how broad the word can be. Some people reject the word or use other terms.

Can intersex people have children or get pregnant?

The short answer is: maybe. Like any person, it depends on body parts. (And sometimes, help from technology.)

Making an embryo requires sperm from testes to meet an egg from an ovary. After that, the fetus needs a place to grow—usually that’s a uterus. These days, there are many ways for all of that to happen, even for non-intersex people. It is not possible for any human to reproduce without another person, including with donation and medical technology!

Can intersex people reproduce?

If an intersex person has a penis and testes that make sperm, they may be able to cause a pregnancy. Some intersex people have a vulva, vagina, and internal testes. Those testes might contain tissue that could be used to reproduce, with technology’s help in the future.

If an intersex person has a uterus, they may be able to carry a pregnancy. If they have ovaries or ovotestes, that tissue could be used for reproduction in some cases. Some intersex people do have ovaries, a uterus, and a vagina, and could get pregnant by contact with sperm.

Fertility is different for each intersex person. Many, but not all, intersex variations do result in infertility. Plenty of other intersex people have had their fertility taken away by non-consensual surgeries to make their bodies appear “normal.” Examples include when internal testes are removed, or when other genital surgeries create scar tissue that makes penetrative sex painful or impossible. This is a sensitive topic. Let intersex people share at their own pace, if they choose.

I’m an intersex person. How can I connect with others?

Welcome to the community! You are not alone. There are many intersex support groups, often on Facebook, where intersex people come together to connect. There is also InterConnect, who hosts a yearly in-person conference in the United States. See our intersex organizations page for known intersex groups in other countries.

Publicly searchable intersex support groups on Facebook:

Many other groups are private or require a referral. There are also some groups that offer spaces that are specific to medical diagnosis, e.g. Androgen Insensitivity, Hypospadias, MRKH, etc. To find information about other groups, we recommend joining a public group first.

If you live in Greece or speak Greek, you can join our Facebook group, our Facebook page or our Intersex Forum.

What is interACT’s advice for parents and doctors caring for intersex children?

Families need emotional and psychological support, not pressure to make decisions about surgery. It is essential to be open and honest about bodily differences with your child and family. Anything else teaches children that their bodies are shameful. The more support you can find, the better. Look for understanding providers. Ask to be connected to other families, as well as adults who share traits with your child.

Like any child, an intersex infant can be raised socially as a boy or a girl without unnecessary surgery. Decisions around surgery that is not life-saving should be delayed. See interACT’s intersex brochures and resources by topic.

Intersex Greece’s advice for parents and doctors caring for intersex children is exactly all the above.

What should I know about surgery on my child’s clitoris, vagina, urethra, or testicles?

Know Your Rights brochure for parents of intersex children

As long as your baby has an opening to pee from, there is no rush to make a decision. If your doctor is recommending a surgery (like a hypospadias repair, vaginoplasty, clitoroplasty, or gonadectomy) that is not immediately life-saving, always ask:

  1. Why at this age?
  2. What are the benefits?
  3. What are the risks?
  4. What happens if we wait and see?

Our Know Your Rights brochure for parents can help. Also see our resource explaining why the most common medical arguments for early surgery are misinformed. Surgery comes with high risks, and can seriously affect sexual function, fertility, and emotional health. Intersex adults have asked for decades: please, let us decide.

We recommend asking to speak with other parents, as well as adults who have and have not had the surgery in question. If your doctor cannot offer those contacts, you can always ask more questions. If you feel your doctor is not respecting your requests, you should seek another provider.

Some kids may grow up and want to change their bodies, but still be glad the decision was theirs to make. Many other kids and adults live with serious pain and trauma because these choices were made for them. When we act early, we never know who will feel which way. Waiting is the best way to avoid irreversible harm.

INTERSEX YOUTH

Source: https://ihra.org.au/youth/

Intersex young people

Finding out you have an intersex variation can come as a big surprise! It’s not something most of us have heard about growing up, but that doesn’t mean you’re alone. There are heaps of us out there with different intersex variations.

A great place to start making sense of it all is to find out more information and meet other people like you. You can learn a bit more about intersex here and what to do in some situations, like at school and when you’re visiting the doctor. There are also some links to great resources and intersex groups you can connect in with.

Not sure if you’re intersex?

Sometimes it’s hard to know if you’re intersex or not. If you’ve seen a doctor, there are lots of medical words to describe different intersex traits, and your doctor may not have used the word intersex either. People also use intersex to mean different things and so this can make it really confusing as to whether your body has intersex traits or not.

We talk about intersex broadly in line with other intersex groups and individuals in Australia and Aotearoa/New Zealand. Basically, intersex includes anyone who is born with sex characteristics that are different from what is considered typical. Sex characteristics include the private areas of your body which often change during puberty and other parts of your body you can’t see, like your chromosomes and hormones. Lots of people have very set ideas about what male and female bodies look like but in reality, intersex people exist and we have bodies that can be a bit different.

There are lots of ways to discover you are intersex. You might realise yourself that your body looks or is developing differently, you might have come across stories by intersex people that sound a lot like your experiences, or your parents/guardian or your doctor might tell you. You don’t need a medical diagnosis to ‘prove’ you are intersex – lots of intersex people don’t get medical diagnoses. If you’re not really sure and you want to know, it’s a good idea to hear from other intersex people about their experiences and see if some of them sound like experience you have had. Whether you are or are not intersex, a lot of the information here can still help you in getting through different situations growing up.

 

What will happen to my body?

Growing up means there will be lots of changes to your body for intersex and endosex (not intersex) people. It can be a confusing time for everyone, and especially if your body develops in a way that seems different to your friends, siblings and peers. Not all intersex traits are visible (they might just be differences inside you) so you might not notice anything different about your body at all!

There are lots of intersex variations and how your body will change will depend on what variation you have. Even then, people with the same intersex variation can develop a bit differently from each other too! We are all unique and how you develop may be entirely normal for you and your body. If you’re unsure about any changes to your body or if things about your body are worrying you, it’s a good idea to see a doctor to make sure you’re okay.

Around puberty, people often talk about reaching certain milestones like getting your period or your voice breaking. Puberty looks different for all of us and it’s okay to not meet particular milestones or reach them at earlier or later times. You might feel different to your friends and peers, but it doesn’t mean anything is wrong with you. While you might feel pressure to change your body to fit in with everyone else, make sure you take the time to learn about your variation and the different options available to you. It’s also really helpful to meet other intersex people who have made those choices or chosen not to make those choices and see what their experiences have been like.

It’s important to keep clear, open communication with your parents and doctors to learn about what changes to expect for your body during this time and what choices are open to you. At the end of the day, it’s important that you feel in control and that you feel comfortable with any decisions that are made about your body.

What does having an intersex variation mean for my identity?

Having an intersex variation doesn’t have to change anything about who you are. You don’t have to ‘identify’ as intersex or as anything in particular. Intersex traits are part of how your body is and doesn’t have to define who you are. Some people choose to call themselves intersex and some people don’t. For people who talk about themselves as intersex, some might choose to say they have an intersex variation, or that they are an intersex man, an intersex woman or an intersex non-binary person. The language we use can often depend on what we are taught by our doctors, by our parents or how we come to know about our variations. Because people often don’t understand what intersex is either, it might feel like it’s just easier to explain your variation in particular ways that feel more understandable by others. There’s lots of ways to be, and it’s really up to you as to how you identify and what language you use to talk about yourself and your body. How you feel about yourself and the language you use can change over time as well.

Being intersex doesn’t mean you are LGBT either, though you might be! LGBT refers to who you are attracted to or your experience of gender, rather than what body you are born with. Many people still confuse intersex with trans, and while some intersex people are also trans, this does not mean they are the same thing.

Searching for information online

There are lots of resources out there on different intersex variations, but a lot of them are very medical and may make assumptions about who you are, what you want and the choices you should take. There is also so much information online that it can be overwhelming and it can be really hard to know what is accurate or not!

Be aware that there are risks with searching information about your variation online. It can be easy to think that what you read online might apply to you, when in reality a lot is still unknown about many intersex variations and you might experience things differently. The safest way to learn accurate information is to connect in with other intersex people and organisations. There is a lot of knowledge within these groups about the best sources for information and which medical professionals are good to go and see. It is also a good idea to talk to an adult who you trust and feel comfortable talking to about this and get them to help you reach others and find reliable information.

Talking with your family

Your family may know a lot about your intersex variation from your doctor and their own research. They might have strong ideas about what kind of treatment you should or should not be taking. They may have made some big decisions about your treatment in the past.

Whatever the case, it’s important to try and have open conversations with your family about your intersex variation and what it means for you and how they might be able to best support you. It’s also important to have conversations with them about any current or future medical treatments.

Sometimes it can be hard to initiate these conversations. For some families, learning about intersex can be quite a surprise, and they may be unsure what to do. Some parents face a lot of uncertainty because they might worry about what being intersex might mean for you. Often, these fears can be due to families not having much information themselves and not meeting other intersex people and their families.

It might feel like your parents or guardians want you to be a certain way, but it might just be a lack of knowledge and they just want to follow what the doctors have told them. It’s important to remember this is probably all new for your parents too, and they are likely to also need some extra support and information to help them understand what is going on.

Your parents or guardians may have already told your siblings and other people about your intersex variation. Ask your parents and family members who knows about it and talk to them about how comfortable you are about other people knowing. Your parents may have told other people because they need support during this time too, but it’s also really important you have a say in who knows and how much they know since it is your body.

Talking with your friends and using social media

Talking with your friends about being intersex or different changes to your body can be an exciting thing! Remember though that you are the one in control, and you don’t have to share anything about yourself that you don’t want to. Your privacy is important and establishing boundaries with your friends about what you share with them and what they can share with other people is really important. Intersex is often misunderstood by people, so it can be helpful if you do share with friends to also give them links to some videos and other information that help explain what you mean.

You might also want to share information about intersex or about yourself online or on social media. This can be a really empowering experience for many of us, but it’s also important to make sure you are aware of the risks of posting information about yourself. Once you’ve shared something about yourself publicly, it’s likely not possible to take it back. Make sure you’re comfortable with certain information being out there and possibly being known by people you may not expect to come across it before you share anything.

Sharing about yourself with friends can be really helpful and supportive, but it can also be scary, especially if you don’t know how they will respond or if they respond in unexpected ways. While most people experience positive support from friends, it can be unpredictable. Remember that there are intersex organisations and other supports at your school that can help you through this if things get tough.

At school

Being at school can have its own set of challenges for everyone. As an intersex person though, you might face some extra things you need to manage, but you don’t have to do it all on your own.

You may need to take a lot of time off for medical things. Maybe you need to take medications which throw you off for a while or maybe you need to have surgeries which require you to take some time out of school. It can be hard to explain to your friends and your teachers why you need extra time off. Some of us also need extra supports in school, sometimes because of our intersex variation or because of the medical treatments we are taking. It is important that you and/or your parents have an open discussion with your teachers and/or the principal to ensure you can keep up with your studies, and that they can support you to take extra time off or provide any extra supports or adjustments that you might need. During these conversations, you don’t have to tell them that you are intersex or what your intersex variation is, but it is important you are clear about what support you need at school.

You will probably also take classes on sex education at different points in your schooling. This can feel pretty uncomfortable and isolating if your body develops differently to what is being talked about or if intersex is raised but not in an accurate way. Often language used to describe these experiences can be really binary and assumptions are often made about how bodies will develop, but puberty can look different for everyone. Intersex might sometimes also be mentioned in biology and other classes at school. While it is not your responsibility to educate others if you don’t want to, if you feel comfortable this is also an opportunity for you to share some information with your teachers about what intersex is and ask them to include intersex-affirming content in some of their classes. Afterall, it’s likely there are other intersex people at your school too!

Schools often use binary (male/female) language to talk about students and may require gendered uniforms and bathrooms and divide students by gender for sports and school camps. While many intersex people are happy with their gender, for some of us we may feel unsure or uncomfortable about it, especially if we feel that we have been forced into a particular category. You might also have a particular sex recorded on your school file that is different to how you present and see yourself. It can be frustrating when you feel like you have to fit into a particular category. Depending on your school, there might be other arrangements that can be made in relation to some of these issues.

It’s possible that some people at school might bully you and give you a hard time if you look a bit different or if they find out about your intersex variation. Unfortunately, there is still a lot of misunderstanding about what it means to be intersex. For some of us, school can be a challenging time. It’s important if you are having a hard time that you have people around you who can support you – whether that’s some friends, family, teachers, a counsellor, youth worker, and/or other intersex people that you can meet through intersex peer groups.

School sports can also be difficult for some of us and for many people who are not intersex! If your school has shared changing rooms and you don’t feel comfortable getting changed in front of your peers, talk to a teacher or principal about what other accommodations can be made. If you don’t feel comfortable having that conversation, your parents or a counsellor might be able to instead. It doesn’t just have to be about singling out you either – arrangements might be able to be made where everyone is able to change separately. It’s important to talk with your parents and the school about what can be done to help you feel comfortable.

You can expect certain things from your teachers and your school. You should have a safe place where you can learn. Some aspects of school might be hard at times, but there are some things that schools have to do for their students, like provide reasonable supports and not treat students unfairly compared to other students. You have a right to ask for more from your teachers and school if you feel you are not being treated right or not getting what you need. It’s a good idea to raise concerns you have with your parents/guardian or someone else you trust and talk to the school about what they can do to ensure you are properly supported.

At your job

You might have a part time job while at school or maybe you’ve finished school now and you’ve started work. Whether you share with your employer or colleagues that you have an intersex variation is up to you! Sometimes it might be helpful to tell your employer certain things if you need particular adjustments made in the workplace, or maybe you need extra time off for medical leave. Most workplaces are supportive, but if you feel like you are not being respected, supported, or you’re getting bullied or harassed, that’s not okay. Talk to your boss or someone higher up who you trust or your workplace might have a Human Resources department you can talk to.

At the doctor

Going to the doctor can be scary and uncomfortable, even for regular appointments. Remember that the doctor is there for you and your health, so you are the one who should be in control. You can ask as many questions as you need to find out information about your body or what tests or medicines your doctor or parents might want you to take. If your doctor and parents talk with each other without you, you can ask to be present and involved in the conversation and ask that they talk to you directly.

If there is anything you are unsure or uncomfortable about, you should raise it with your doctor or a parent/guardian. This might include things like medical examinations or photography. You can also tell your doctor if you don’t want some people in the room with you like other medical staff, and you can also ask to talk to your doctor alone. Remember, you can say no to anything that makes you uncomfortable.

It can be hard to speak up about what you want in medical settings. It’s important that you feel like you know what is happening and that you feel comfortable and involved with decisions that are made. If you like, you can bring someone along to your appointments – this might be your parents/guardian or a trusted friend. Talk to your trusted person before your appointment and tell them what you are and are not comfortable with. They can support you and speak for you during the appointment.

Going to the doctors is sometimes quite overwhelming. There can be a lot of information given to you which doesn’t make much sense and you might feel like you need to agree to things you’re not really sure about. It’s important that you take the time to learn about what all this means for you and your body and, if you’re unsure, take more time. Ask your doctor for more information or where you can go to learn more, and connect in with other intersex people to learn from them. Remember that you’re not alone. Sometimes you might have to make big decisions, or be involved in decisions being made – but there are other people like you and you can get help to makes these decisions.

You might not know much about what has happened to you when you were younger. Some intersex people find it hard to access medical records later in life. It’s important that you know or are able to have access to your medical history. Talk to your parents about it and/or ask your doctor for your medical records. This can be really helpful for you to make current and future decisions about your medical care.

Sometimes when you go to a new doctor, they may not have heard about your intersex variation before or know very little about it. Some of us feel like we have to do a lot of work educating our doctors. If you’re seeing a new doctor, you might want to come prepared to talk briefly about what your intersex variation is, what it means for you and what it is you want.

Connect with others

While there might seem like there’s lots you need to know now, and you might be unsure about what things will be like in the future for you, the good thing is that there are heaps of amazing intersex people out there who have been through similar experiences before! You’re not alone and you don’t need to know everything at once. Take the time to learn and work out what feels right for you. This is a process and many intersex people find it really helpful to meet other intersex people to help them work out what all this means for them.

There are different variation-specific groups out there as well as broader intersex groups.

The main peer and family support group in Australia is Intersex Peer Support Australia. You can connect with them online and they also hold meet-ups in person from time to time in different cities in Australia, as well as an annual weekend retreat.

If you are in Canberra, A Gender Agenda has an intersex peer worker who you can chat with and they run events for intersex people in the area.

You can also follow YOUth&I, an Australian intersex youth zine. Find YOuth&I on Twitter, Instagramand Facebook. You can have a look at what other young people have written or created about their experiences and you can also contribute to a future issue if you’re interested!

  • Intersex Youth Aotearoa is an intersex youth group in Aotearoa/New Zealand.
  • InterACT is an intersex youth and advocacy group in the US.
  • OII Europe is a European intersex organisation that hold events from time to time for intersex youth. Check out this video made by intersex youth in Europe: ‘Come Join Us: Intersex Youth in Europe’.

  • IGLYO (International Lesbian, Gay, Bisexual, Transgender, Queer & Intersex Youth and Student Organisation) is an international LGBTI youth organisation. Check out this video by some of their members: ‘We Are Here: Intersex Youth’.

If you live in Greece or speak Greek, you can join our Facebook group, our Facebook page or our Intersex Forum.

Other resources

ReachOut.com – ‘Understanding What It Means To Be Intersex’: https://au.reachout.com/articles/understanding-what-it-means-to-be-intersex

Kids Helpline – ‘Understanding people with intersex variations’ (for teens): https://kidshelpline.com.au/teens/issues/understanding-people-intersex-variations

TOOLKITS & GUIDES

INTERSEX FOR PARENTS

Source: https://4intersex.org/parents/
Content last reviewed 24 February 2021

We hope that this page will be helpful to you if you have a new baby, or if you’re planning a pregnancy, or you’ve recently discovered that your child has an intersex variation, sometimes called a “DSD” or “disorder of sex development“.

Bodily diversity is natural

With your love and support, your child is as capable as any other of growing up to be happy, healthy and fulfilled. It’s ok to feel uncertainty and concern for the future. These are feelings that all parents share. What matters most is that you love and accept your child.

Shame, secrecy and stigma cause unhealthy outcomes for your child and your entire family. We exist to help address those issues at a societal level, and we work with partners like Intersex Peer Support Australia to help families and individuals. We believe that acceptance is healthy, and that honesty and openness are the best gifts that your family can share. If your child’s characteristics are presented in a simple, straightforward way, then your child will understand them in that way.

Bodily diversity is normal and natural. All sorts of people live happily with different kinds of bodies and genitals. We don’t recommend making decisions based on demands for quick action, or relieving your own anxiety. We believe that children should grow up free to make their own choices about irreversible changes to their bodies. Increasingly, some families are choosing this approach.

It is our experience that surgical and hormonal “normalising” treatments reinforce stigma and shame, rather than addressing them. Cosmetic surgical interventions may be intended to fix immediate issues of appearance, but there’s no evidence of benefit from such medical interventions (Lee, et al. 2016). There is evidence of harm from such interventions (Public statement 2016, Office of the High Commissioner for Human Rights 2019). They are known to have damaging consequences for intimacy and sexual function in later life (Carpenter 2018). Like any child, intersex kids may grow up to identify in ways that are not expected.

Surgeries are also unlikely to make a body appear or function “normally”. Gonadectomies (removal of reproductive organs) create a need for lifelong hormone treatment. Genital and other surgeries always damage nerve tissue. Surgeries create scarring. Repeat surgeries may be necessary as children get older – this is a particular risk with hypospadias surgeries and vaginoplasties, but it is also the case with other genital surgeries. Bear in mind that all early exposure to general anaesthetic is now associated with developmental delays at school (FDA 2016, Schneuer et al. 2018).

We believe that surgical and hormonal interventions need to be evidenced, and carefully justified. It must be based on the long-term interests of the recipient, and not grounded in gender stereotypes. If surgery is proposed, ask for firm evidence of medical necessity and evidence of good outcomes from any doctor and hospital seeking to perform surgery on your child. Ask them what they mean by “good outcomes”, and whether or not this is limited to cosmetic appearance. Make sure this evidence is written down and properly documented, and make sure it is relevant to the specific circumstances of your child. Keep a record.

Get in touch with our partner organisation, Intersex Peer Support Australia, and access their network of peer support folks across the country. And make sure that your doctors prioritise giving you recommendations for psychological support.


This video has been published by United Nations for Intersex Awareness. Read the accompanying website

Medical interventions and human rights

Irreversible, invasive and deferrable surgeries to modify the sex characteristics of infants, children and adolescents have human rights implications. Some UN institutions have described some current clinical practices in Australia as “harmful practices”, comparable to forced marriage and female genital mutilation (Public statement 2016, Office of the High Commissioner for Human Rights 2019).

You should never be put into a position where you are asked by clinicians to consent to such practices on behalf of your child, but this may still happen. Get in contact with us if you feel any doubt.


Stephani and Eric Lohman, authors of the book Raising Rosie: Our Story of Parenting an Intersex Child talk about their child. The book was published in 2018.

Announcing a birth

Often, the first thing people might ask is if your child is a boy or a girl, and this can feel troubling if you don’t yet have clear information. It’s ok to delay an announcement until you’re ready.

One strategy you can use is to name your child with a gender-neutral name – a name used for boys and girls. There are many great gender-neutral names.

It is possible to disclose a more likely sex of rearing, based on early advice. In this scenario it isn’t necessary to disclose any more personal information unless the assigned sex changes.


A video by Human Rights Watch in the US, that accompanied a major report published in 2017.

Choosing a sex

In the societies we live in, assigning your child male or female is appropriate. Choose whichever seems predominant, based on the information available to you. Recognise that, like any child, they might grow up to understand themselves differently. Bear in mind that sex assignment does not actually require surgical or hormonal treatment.

Most importantly, don’t feel pressured to make fast decisions. Gather information, come talk with intersex-led support organisations.

Adolescence

Puberty means that bodies change, and diagnosis with an intersex variation can happen at puberty or during adolescence. The same issues that arise with infant genital surgeries can also happen with medical interventions during adolescence. These can include interventions based on presumed gender identity or sexual orientation. Research published in 2016 has shown high rates of early school leaving due, in part, to the impact of medical interventions during puberty (Jones 2016).

Adolescents need to be fully involved in decision-making, and access to peers is essential to enable good decision-making.

My kid has had surgery, but…

It’s often the case that parents come and find us when something unexpected happens: surgery didn’t work out as expected, or your child grows up to have a different gender identity to the one originally expected.

We know that it can be difficult making decisions, and there can be a lot of pressure to act quickly without good information on the long-term consequences. We and our partner organisations are happy to do our best to help — without judgment — regardless of your child’s history.


Ori and Kristina Turner in Raising the world and an intersex child, a 2018 video by NBC News. Read the related feature ‘You can’t undo surgery’: More parents of intersex babies are rejecting operations

What kinds of diagnoses are there?

There are many different kinds of intersex body and sex characteristics. We come across children and adults with XXY or Klinefelter syndrome, androgen insensitivity (AIS), 5α-reductase deficiency (5α‐RD2), 17ß-hydroxysteroid dehydrogenase 3 deficiency (17β‐HSD3), hypospadias, Turner syndrome (X0), Mayer-Rokitansky-Küster-Hauser (MRKH), micropenis, ambiguous genitalia, congenital adrenal hyperplasia (CAH), clitoromegaly, hyperandrogenism, and many more.

We share in common some experiences of growing up with bodies that don’t fit stereotypical norms for females or males, and we also have many differences from each other. We have many different ways of understanding our bodies, our sexes and genders; we might prefer many different words to describe our sex characteristics, and that’s ok.

Sometimes we might have specific needs associated with a diagnosis. CAH might need immediate medical attention to manage adrenal issues. Klinefelter and Turner syndromes can each be associated with some specific developmental issues that may need support. Sometimes these issues can seem overwhelming, at other times they may seem overstated. Some people can go through a lifetime without being diagnosed, but yet experience the same issues.

Contact with other people with similar diagnoses and lived experience can make a huge difference.

The future

Intersex people lead happy and fulfilling lives and are active in all walks of life in Australia. We exist, and so do our families.

Our society is changing, it is becoming more accepting of different ways of being female or male, and more accepting of people who understand themselves in different ways. There are challenges for all of us, but the future looks welcoming.

Meeting other people, and understanding your body, make a huge difference. This video is by Young Intersex, filmed in Brussels in 2017.

Resources

Here are some personal stories by parents on raising their child:

Resources about parenting intersex children:

Documentaries, art and stories by intersex people:

Fiction:


A parent talks: this piece for television, broadcast by SBS in March 2015, includes an interview with a parent. Read about this story here, and a follow-up article here.

More information

  • YOUth&I stories, poems and art by intersex youth, edited by Steph Lum, 2019
  • Intersex for allies introduces intersex issues to a broad audience. Available to read online, or download as a PDF and print.
  • Intersex in the workplace introduces information for employers and unions on intersex people and issues in the workplace. This also contains links to resources developed in collaboration with partners, and by UNISON in the UK.
  • Defining intersex: Australian and international definitions.
  • Read more on intersex intersectionalities including with women, disabled people and LGBT peoples.

References

While originally we wanted to make this page as simple and friendly as possible, from 2021 we are including key references to improve transparency and fact checking.

Carpenter, Morgan. 2018. ‘Intersex Variations, Human Rights, and the International Classification of Diseases’. Health and Human Rights 20 (2): 205–14. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6293350/

FDA. 2016. ‘FDA Drug Safety Communication: FDA Review Results in New Warnings about Using General Anesthetics and Sedation Drugs in Young Children and Pregnant Women’. Center for Drug Evaluation and Research and Food and Drug Administration. http://www.fda.gov/Drugs/DrugSafety/ucm532356.htm

interACT. 2015. ‘What We Wish Our Parents Knew’. http://interactadvocates.org/wp-content/uploads/2015/12/BROCHURE-interACT-Parents-final-web.pdf

Jones, Tiffany. 2016. ‘The Needs of Students with Intersex Variations’. Sex Education 16 (6): 602–18. doi:10.1080/14681811.2016.1149808.

Kids Helpline. 2020. ‘Understanding People with Intersex Variations’. Kids Helpline. https://kidshelpline.com.au/teens/issues/understanding-people-intersex-variations

Lee, Peter A., Anna Nordenström, Christopher P. Houk, S. Faisal Ahmed, Richard Auchus, Arlene Baratz, Katharine Baratz Dalke, et al. 2016. ‘Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care’. Hormone Research in Paediatrics 85 (3): 158–80. doi:10.1159/000442975.

Lum, Steph, ed. 2019. YOUth&I Issue 1. https://darlington.org.au/wp-content/uploads/2019/10/YOUthAndI-Layout-Final-Web.pdf

OII Europe, IGLYO, and European Parents’ Association. 2018. ‘Supporting Your Intersex Child – A Parents’ Toolkit’. https://oiieurope.org/supporting-your-intersex-child-a-parents-toolkit/

OII-USA, Hida Viloria, and Claudia Astorino. 2013. ‘Your Beautiful Child: Information for Parents’. OII-USA. https://www.intersexequality.com/wp-content/uploads/2014/07/One-sheet_Your-Beautiful-Child.pdf

Public statement of UN and regional human rights experts. 2016. ‘End Violence and Harmful Medical Practices on Intersex Children and Adults, UN and Regional Experts Urge’. http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=20739&LangID=E

ReachOut Parents. 2019. ‘Supporting an Intersex Teenager’. https://parents.au.reachout.com/skills-to-build/connecting-and-communicating/things-to-try-supportive-parenting/supporting-an-intersex-teenager

Schneuer, Francisco J, Jason P Bentley, Andrew J Davidson, Andrew JA Holland, Nadia Badawi, Andrew J Martin, Justin Skowno, Samantha J Lain, and Natasha Nassar. 2018. ‘The Impact of General Anesthesia on Child Development and School Performance: A Population-Based Study’. Pediatric Anesthesia, April. doi:10.1111/pan.13390.

Document history

Our page for parents was originally created in 2013, but this material been entirely rewritten in the years since then. In February 2021, citations were added to this page.

UN High-Commissioner for intersex rights

Intersex: When binary notions simply don’t fit

For the scientific community, gender is usually associated with one’s sex and therefore the presence of X and Y chromosomes. However, XX and XY chromosomes are not that simple. There are cases where neither sex organs nor the presence of sex chromosomes dictate sex.

Tales Of An Intersex Soccer Mom

Being born with a condition referred to as androgen insensitivity syndrome also meant I would never menstruate or have biological children. Instead, I was fated to become the luckiest mom in the world and adopted my identical twin daughters…

INTERSEX FOR ALLIES

Sources: https://4intersex.org | https://interactadvocates.org | https://ihra.org.au/allies/

Being an ally

Source: 4intersex-Ally-Dos-and-Donts

Be clear in your language and frame of reference. Intersex is about sex characteristics. It is distinct from legal sex, sexual orientation and gender identity, and not contained within LGBT.

Affirm the 2017 Darlington Statement by Australian and Aotearoa/NZ intersex organisations and advocates. Also, affirm the Vienna Statement (2017, by OII Europe and European intersex organisations and advocates) by signing here.

*What does it mean to be an ally? Guide to Allyship is a fantastic starting point for understanding the concept. This document offers intersex-specific allyship tips.

Do’s and Dont’s

Tips #4intersex Allies:

Tips #4intersex Allies:

DO

Your own research.

You can set thegroundwork for your own understanding. After reading everything in the #4intersextoolkit, seek out even more media, books,and films created by intersex people. Here’s a small selection:

And dive deeper on the web:

Adjust your language.

Call things what they are instead of gendering them, e.g.“XX/XY chromosomes,” instead of “fe/male chromosomes.” Acknowledge sex and gender as diverse spectrums. Always ask individuals what they prefer. For more language tips, see our Talking About Intersex document.

Use your voice.

Promote intersex causes on social media. Ask your friends, family, doctors what they know. Call out that “hermaphrodite” joke.

Educate others.

Use #4intersex toolkit materials to spread the word about what you’ve learned. We encourage allies to include intersex information in their presentations!

DON’T

Suggest that intersex people aren’t “normal”.

Who defines “normal?” For us, that’s often surgeons. We have healthy bodies that may just happen to look or function a bit differently.

Share private information.

If an intersex friend confides in you, respect them. Ask what is okay to mention to others and what is not.

Expect to be educated.

Intersex is still not commonly heard of, so we spend a lot of our time explaining our basic existence, especially to doctors and caregivers.

Assume similarities about all intersex people.

We’re all different. Not all of us have had surgery, identify with a particular gender, or even view being intersex as an identity.

Assume similarities about your experience as a non-intersex person.

Many people, when first introduced to the topic, compare intersex surgeries to circumcision. While we support all movements for bodily autonomy, this common practice is quite different than the forced sterilizations, clitoral cutting, genital reconstructions, and other intensely invasive procedures that systematically erase intersex existence to create “normal,” heterosexual bodies.

Speak over us.

By doing this, you risk contributing to our invisibility. Recruit and compensate intersex people to tell intersex stories. If you are writing an intersex character, consult with intersex people from the beginning. Intersex representation, even from LGBTQ outlets, has been historically botched and medicalized. Nothing about us without us.

Tips #4intersex Allies in the Medical Profession:

Tips #4intersex Allies in the Medical Profession:

DO

Identify and reframe defensiveness.

The intersex community is not anti-medicine. We are traumatized by medicine. Trauma causes intense feelings. Try your best to identify and halt feelings of defensiveness. If you’re feeling defensive, try to slow down and listen to those who have been harmed. It’s about a system, not you personally. Channel discomfort into changing the system. True allies listen and push on when it gets harder.

Research support resources.

Only half of intersex people reported that their doctors connected them to resources such as support groups.[1] Many of us are told we’re the only ones. You can help stop the lie of loneliness.

Ask what matters to us.

For years, medicine assumed outcomes such as peeing standing up, looking “normal” for an assigned sex, or having penetrative intercourse mattered most. Reframe outcomes based on what patients say matters most to them. They’ll need to be old enough to speak in order to tell you.

Recognize medical trauma.

Young children may not know the difference between medical attention on their genitals and sexual assault. Many of us have been abused by providers, and thus avoid all care as adults. Know this. Take careful steps to center consent at all times.

Bother your colleagues.

Become that person at cocktail parties. Nothing will change until intersex knowledge becomes common knowledge.

Remember your authority.

You are the first touchpoint for someone who is learning potentially traumatic and life-altering information. Your sensitivity will make or break psychological outcomes.

Be open to challenging what you knew.

For example, some female-identified intersex people feel significantly more comfortable on testosterone. Not all of us want the same things.For example, some female-identified intersex people feel significantly more comfortable on testosterone. Not all of us want the same things.

Use your power within the system to help make positive change.

Share this with your colleagues. Join us in the fight to make sure every intersex person gets the bodily autonomy they deserve, just like everyone else.

DON’T

Center your own discomfort.

How would ​any person feel if their most intimate parts were stared at, or implied to be shameful and different?

Suggest that intersex people aren’t “normal.”

Normal is a function of how you are treated in the world. Model an authority figure treating us with respect, and we’ll grow up with self confidence. Rebrand intersex traits as natural variations, instead of problems to be fixed.

Use outdated terminology.

Only 3% of adult intersex people self-identify with the term “Disorder of Sex Development,” but 21% feel they have to use it,‘disordering’ themselves to access care.​[2]​ Avoid gendered language like “(fe)male chromosomes,”and always avoid the stigmatizing term“hermaphrodite,” even though it still appears in medical literature. Read all language tips ​here​.

Assume anything about our sexuality.

Remember that treatment models were often developed decades ago, inspired by strict ideas about gender roles. We may be LGBTQ and/or asexual. Don’t assume we all want penetrative sex. Ask what is important to us once we are old enough.

Think chromosomes mean anything about genderidentity.

Plenty of XY folks ID as female, plenty of XXID as male. It’s also possible to be XXY, XXXY, XO, etc.Chromosomes are not a reliable indicator of how a child will self identify. Research the history of medicine looking for a “marker” of true sex. Much like the quest for a “gay gene,” this ideology harms marginalized patients.

Wait for patients to educate.

How would you feel if you went to see a doctor for help and they told you they’d never heard of your reason for visiting?

Use us as a teachable moment.

Be aware that intersex patients often carry trauma related to exams and student observation without our consent. Be extremely careful when asking us if others can observe. Respect our right to say no.

Prioritize expertise over consent.

Treatment teams reflect careful thought, but ultimately cannot be patient-centered if informed consent is missing. If a procedure is to change appearance and/or future sexual function, it is cosmetic, and for an individual to choose.

download as pdf
Intersex panel participants at the Health in Difference conference, 2018

Intersex for researchers: Researching intersex populations

We need high quality research that addresses the needs and circumstances of people with innate variations of sex characteristics, and we favour community-based participatory research that recognises and responds to those distinct concerns. The following principles set out our policy and guidance on studying this population.

INTERSEX FOR RESEARCHERS

Source: https://ihra.org.au/allies/

Research priorities

Current research on intersex populations frequently suffers from framing effects. Clinical research predominantly focuses on infants, children and adolescents, with limited research on adults and a lack of long-term outcome data:

Available clinical data lacks adequate sample sizes, independence, and often lacks relevant control groups. It is often framed around clinical preoccupations with, for example, genital appearance, heterosexuality, and gender conformity. (Carpenter 2018)

At the same time, research on LGBTQ/LGBTIQ sexual and gender minorities frequently presumes particular experiences of sexuality and gender non-conformity, and focuses on their implications for adult populations.

These approaches have incommensurate, and sometimes contradictory, beliefs about the needs and characteristics of intersex people, with consequences for data quality and interpretation. Neither approach is firmly grounded in the needs of people with intersex variations.

Our research priorities are set out in a limited way in the 2017 Darlington Statement, a community consensus statement by organisations and individuals in Australia and Aotearoa New Zealand:

30. We call for more research, including clinical, sociological and psychological research, led by community input. Clinical research, including longitudinal research, requires true, non-medicalised controls (AIS Support Group Australia, et al. 2017)

Understand the population

It is helpful to do some background research before approaching Intersex Human Rights Australia. There is a large volume of research on intersex people, including more than 60 years worth of medical studies, and some smaller quantity of more recent LGBTQ/LGBTIQ research.

We need researchers to have familiarised themselves with the basic literature on intersex.

We strongly advise that researchers contact us early in the design process for any study that includes Australians with intersex traits. Without participation in study design we may choose not to participate at all.

Clinical research

Bad practice

In May 2019, we received an invitation for people with androgen resistance to participate in a study on “social experiences of individuals who have had genital reconstructive surgery to correct an intersex condition”. The terms “reconstructive” and “to correct” are loaded. They show bias and a flaw in reasoning, presupposing the validity of particular kinds of medical intervention.

We are only able to support and promote research studies that respect the human rights of people with innate variations of sex characteristics, that use neutral language, and that enable respondents to freely express their own views about such interventions.

On the one hand, much of the medical research pathologises intersex people as subjects for treatment, focusing on our genitalia and other physical characteristics, including by framing intersex variations as “Disorders of Sex Development”. For many in our community, invasive questioning begins early in life, alongside regular genital and other medical examinations. This can contribute to a feeling of survey burn-out.

Clinical research is subject to implicit and explicit assumptions and methodological issues that adversely affect the quality of clinical evidence. These include a reliance on small and non-representative case studies, and forms of bias that include sampling bias, apprehension bias, and conflicts of interest. Too much clinical research relies on studies of patients by their own clinicians and it risks being based on a perceived need to legitimate early surgeries and hormonal treatments.

Please be aware of the histories of clinical practice and current practices, and also of human rights, bioethical and other critiques of clinical research.

 

Studying intersex people with LGBTQ populations?

On the other hand, we have been unable to usefully reference any LGBTQ/LGBTIQ research, frequently due to inaccurate assumptions about intersex people that affect participation rates and responses. These include assumptions that frame intersex people as homogeneous, as a gender identity (typically a non-binary gender identity), or assumptions that frame our experience as one of transition, or same-sex attraction.

Make sure you understand the population. Make sure you know who you are including in your research and why. Make sure you know who you are excluding from your research and why. Make sure that your exclusions do not form part of a systemic pattern of exclusion. It is a false dilemma to posit choices in research design between systematic exclusion or tokenism. Two resources on intersex inclusion and raising the bar published by Intersex Human Rights Australia, Intersex Peer Support Australia and the National LGBTI Health Alliance can help you to identify these issues (Intersex Human Rights Australia, et al. 2020).

Ensure that you can disaggregate your data by population. The Yogyakarta Principles plus 10 recognises that sex characteristics are distinct from other grounds, and so should research surveys and analysis:

RECOGNISING that the needs, characteristics and human rights situations of persons and populations of diverse sexual orientations, gender identities, gender expressions and sex characteristics are distinct from each other.

(Yogyakarta Principles 2017)

Similarly, the federal Sex Discrimination Act, as amended in 2013, distinguishes the attribute of “intersex status” from “sex”, “gender identity” and “sexual orientation”. This approach should guide thinking about intersex inclusion. Make sure you can disaggregate LGBTIQ populations throughout, recognising the circumstances and intersectionality of intersex and LGBTQ populations.

If your LGBTIQ+ data do not contain a representative or statistically significant number of intersex people then they are likely to be better described as “LGBTQ” data. Framing non-inclusive research as “LGBTI” research can have negative consequences for intersex populations, including misrepresentation. We strongly encourage specific research on intersex populations, and addressing community needs and demands.

The intersex movement and intersex studies

The intersex movement is growing, with effective (albeit poorly resourced) advocates in Australia and countries across the world. We understand our communities and populations because we are intersex-led. One of our demands is “nothing about us without us”, expressed in the Darlington Statement.

Intersex studies is an interdisciplinary and growing field, frequently involving collaboration with intersex-led organisations, and also involving academics with lived experience. This field promotes community-based participatory research. If the field is unfamiliar to you, then please ask us for a bibliography or consult the Oxford Bibliographies on intersex as a starting point for further research.

Accurately identify the population

Ask questions that reflect the diverse lived realities of the population, without making assumptions about sex classifications, gender identities, sexual orientation or other variables.

Asking questions on sex or gender

Do not add intersex in a survey question about sex or gender. Like everyone else, intersex people are assigned a sex, reflecting sex characteristics that are observed at birth. In some cases, clinicians will perform a range of tests to determine sex, typically presupposing that assignment to align with a future heterosexual, cisgender identity. Unless an individual determines otherwise for themselves, it is not ethical to disregard assigned sex.

When/if you ask about sex or gender, such a question should support non-binary options, such as “X” or “non-binary“. X is used in Commonwealth government guidelines on the recognition of sex and gender. This will offer recognition to anyone (regardless of intersex status) with a non-binary gender identity or legal sex.

We strongly recommend supporting multiple choice answers for questions on sex or gender. An open field for gender will be helpful for some respondents, irrespective of whether or not they have an innate variation of sex characteristics.

Add a separate question on sex characteristics

Some of us are intersex, while other people might have an intersex variation or prefer any of an array of other terms. The words we choose reflect our experiences of stigma and misconceptions, and what we are taught by our parents, clinicians and communities. Sometimes people choose different words in different situations.

Because of this diversity, questions on intersex should be separated from questions about sex or gender. Separating intersex from a question on sex and/or gender will avoid misgendering or mis-classifying people with intersex variations (describing our sex assignments, sex markers and gender identities inaccurately). It also avoids inadvertently includes false positives, people who mistake intersex for a non-binary gender identity.

Adding a specific question will help to prevent false negatives, that is a failure of someone who fits a criterion to tick a survey box that is intended for them. By helping to demonstrate an understanding of intersex variations, it will also help ensure commencement or completion of a survey. This approach also correctly can enable the management of a person’s intersex status as sensitive data, while this is not yet the case for sex or gender.

Suggested basic survey question

It is not possible to assume that survey respondents understand what is meant by the term “intersex”. We strongly recommend making the question descriptive:

“Were you born with a variation of sex characteristics (this is sometimes called intersex)?”

or:

“Intersex is a term for people born with atypical physical sex characteristics. There are many different intersex traits or variations. Do you have an intersex variation? Yes/No”

It may be appropriate to include the responses “Don’t know” or “Prefer not to say”.

IHRA has contributed to the improvement of data quality in many different settings, and so these questions are consistent with the federal Style Manual and the 2020 Australian Bureau of Statistics Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables.

Important note: if the language on being “born with” is removed, then the wording asks a different question because it thus includes people who have acquired variations in sex characteristics, for example, through medical gender transition, female genital mutilation or other trauma, or other health issues. Synonyms for “born with” include “innate” and, in medical contexts, “congenital”.

Studying the diversity and health needs of the intersex population

In healthcare settings, specific data is essential. To accurately study an intersex population, including the broad diversity of that population, it is appropriate to ask for any available diagnoses, or a description. This information is required in order to ensure a strong and more representative spread of diagnoses and lived experiences. In doing so, it is important to be aware that some people may lack an accurate diagnosis, and some people mistake intersex for other concepts. An appropriate question can state:

Please state your diagnosis (if any) or describe your variation

In some cases, providing a non-exhaustive list of common intersex variations may assist potential respondents.

Important note: Please recognise that this is sensitive data. Please also be aware that diagnostic data combined with just one or two demographic characteristics (such as age, gender, sex, location or occupation) can and has been sufficient to identify individuals. At least one survey has been removed from publication because of this serious failing. Consider how you can demonstrate your awareness of this concern to reassure respondents and your ethics oversight committee. These data also require interpretation, so you will need to consider involving an institution like IHRA or Intersex Peer Support Australia (IPSA).

You may find it helpful to ask how study respondents prefer to talk about their bodies and characteristics.

Inventories of sex characteristics

If you are researching health needs or healthcare, an inventory of sex characteristics (sometimes called an organ inventory) may be appropriate. The goal is to identify the specific reproductive organs and anatomy that an individual may have, taking account of diverse developmental variations and surgical histories. It is intended to make sure that patients have access to healthcare services they need, and are not repeatedly asked about body parts they don’t have.

Bear in mind that variable disclosure of health information to people with intersex variations (Office of the Privacy Commissioner, NZ 2018) mean that many people will lack full information about their body parts.

For more information see interACT (2020) and Deutsch et al. (2013).

Ensure the survey is relevant and meaningful

People with intersex traits can and will engage with relevant, respectful surveys, but properly including intersex status as a survey question is only one element in ensuring effective and meaningful inclusion.

If a survey is predicated only on issues of sexual orientation and/or gender identity then it is not being inclusive of intersex people. Typical failures to include people born with intersex traits include:

  • assuming an experience of identifying as queer, sexuality or gender diverse, LGBTQ or LGBTI
  • assuming that no LGBTI people are heterosexual
  • assuming an experience of gender transition, or an experience of having a gender identity different to legal sex assigned at birth; assuming that variations from typical embodiments signify some form of intended transition
  • assuming an experience of “coming out” to family, when most people with intersex variations first discover an intersex status from parents or doctors
  • assuming that medical interventions related to gender presentation or sex characteristics are/were voluntary; assuming that variations from typical embodiments signify choice or voluntariness in undergoing a procedure

In sum, many of these failures reflect a focus or interest in issues of identity and not embodiment, including assuming that people with particular embodiments have particular identities. Some of these assumptions may be true of some intersex people, but many of these assumptions will generally target only intersex people who are also LGB and/or transgender. These assumptions can be regarded as a form of tokenistic inclusion. They fail to consider the actual characteristics and needs of the intersex population, but they remain widespread and are likely to contribute to failures to participate in LGBTIQ research.

If you are constructing a study of LGBTIQ populations, make sure your study is understandable and meaningful throughout for heterosexual, cisgender intersex people who are unfamiliar with terms used by LGBTQ populations.

For example, framing a study as for “people identifying as LGBTIQ” is unlikely to attract many intersex respondents, and may only attract respondents who are LGBTQ, skewing research results accordingly. If all your intersex participants are LGBTQ then this is clear indication that your study has not been inclusive of intersex people.

We encourage consideration of the implications of intersex bodily diversity. A survey that is inclusive of people born with intersex variations may consider issues of discrimination and stigma due to physical characteristics. It may need to consider the health, social and personal consequences of forced or coercive medical interventions.

Consider how your research can be reframed to include effective consideration of health, human rights and other considerations affecting people with intersex variations.

If you are conducting face-to-face interviews with people and discussing issues relating to experiences of stigma, discrimination, and forced or coercive medical practices, your research must be trauma-informed and consider how to support your interviewees after the session.

Good practice

The first broad Australian community-based survey of people born with atypical sex characteristics received 272 valid responses. It was conducted in 2015 by the University of New England and developed with a reference group including people from Intersex Human Rights Australia, IPSA and the National LGBTI Health Alliance.

The research obtained information on demographics without presumptions about identities or preferred language, along with information on people’s experiences of diagnosis, medical interventions, health and social issues. It has provided invaluable insights.

Ensure the survey is accessible

Consider how a survey is imparted and distributed to potential participants. Using filter questions presuming identification with an acronym is a cause of ascertainment bias, narrowing the range of respondents with innate variations of sex characteristics.

It is essential to consider distribution channels other than the “LGBTI” media. For example, an independent study of people born with atypical sex characteristics used a variety of methods, including our own channels, advertising in the journal of the Genetic Support Network of Victoria, and tailored social media advertising.

Some people with intersex variations may prefer paper copies of surveys, or prefer to be interviewed in order to participate in your research. These preferences are not random and so a lack of attention to them risks introducing a form of bias; they may be linked to systemic issues affecting people with particular traits, such as sex chromosome variations.

Bad practice

Early in 2018, we responded to a request for comment on a survey that asked people born with intersex variations if work colleagues “refer to me using intersex pronouns that match those I use for myself.”

There was no evidence to support this line of inquiry. There are no intersex-specific pronouns, and intersex people have all sorts of legal sex classifications, gender identities and experiences. Even worse, the study included no lines of inquiry relating to actual, evidenced concerns about workplaces.

Disclosure, benefit and ethical oversight

The level of disclosure for such research is often high. Researchers should bear in mind that repeatedly disclosure of personal information can be an unreasonable impost on intersex individuals. Research – particularly research discussing medical histories – must be trauma-informed.

Many resources exist on this site, and other intersex-run sites, containing personal stories. Further information from Intersex Human Rights Australia members should only be sought if the research is significant and will contribute to the wellbeing and greater understanding of intersex people and issues.

The level of supervisory and ethical oversight for research projects must meet high standards for both researcher and participant, including ethics approval by university or other research institutions.

Checklist

This is a new short checklist for research teams that we are trialling in response to a common research situation, where intersex people are studied as part of a study of LGBTI populations.

  1. We have familiarised ourselves with the literature on intersex, and have researched the history, needs and situation of people with innate variations of sex characteristics in relation to the issues addressed by our study.
  2. We have engaged experienced and accountable intersex community members in designing our study, and we compensate them for their time and expertise.
  3. We demonstrate an understanding of the intersex population in our study design, materials and language.
  4. Our study recognises the human rights of people with innate variations of sex characteristics, including the right to bodily integrity.
  5. We demonstrate our respect for the confidentiality, health and wellbeing of research participants.
  6. We ask a specific question on innate variations of sex characteristics, in line with recommendations by IHRA, and the 2020 ABS Standard.
  7. We ask information on specific intersex variations and specific sex characteristics when relevant.
  8. Our survey does not presume identification with an acronym or LGBTQ experiences of sexual orientation or gender identity.
  9. The survey is accessible and meaningful throughout for heterosexual, cisgender intersex people who are unfamiliar with terms used by LGBTQ populations.
  10. We disaggregate LGBTIQ populations throughout, recognising the circumstances and intersectionality of intersex and LGBTQ populations.
  11. We have identified distribution methods outside of LGBTQ contexts.

 

Good practice

The 2014 study From Blues to Rainbowsinappropriately included and framed intersex within a study on trans and gender diverse people, leading to flawed results. The researchers at the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University discussed these data quality issues with us. As a result, the authors handled this problem effectively in their final report, detailing those framing and data quality concerns.

Next steps

If you wish us to participate in your advisory group or reference group, please contact us when designing your project. Typically, this will mean before you have obtained funding or ethics approval.

If you have created your survey instrument and you wish us to share your study or invite responses to your study, please:

  1. Send us a full Word or PDF copy of your survey instrument.
  2. Let us know how people with intersex variations were involved in developing the study goals and methods.
  3. Let us know how people with intersex variations will benefit from the study.
  4. Respond to the questions in the trial checklist, if the context applies to your survey.
  5. Contact us before your survey launches.

More information and resources

AIS Support Group Australia, Intersex Trust Aotearoa New Zealand, Organisation Intersex International Australia, Eve Black, Kylie Bond, Tony Briffa, Morgan Carpenter, et al. 2017. ‘Darlington Statement’. https://darlington.org.au/statement

Asia Pacific Forum of National Human Rights Institutions. 2016. Promoting and Protecting Human Rights in Relation to Sexual Orientation, Gender Identity and Sex Characteristics. Sydney, Australia: Asia Pacific Forum of National Human Rights Institutions. http://www.asiapacificforum.net/resources/manual-sogi-and-sex-charactersitics/

Australian Bureau of Statistics. 2021. ‘Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables, 2020’. https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex-characteristics-and-sexual-orientation-variables/latest-release

Australian Government. 2020. ‘Gender and Sexual Diversity | Style Manual’. https://www.stylemanual.gov.au/format-writing-and-structure/inclusive-language/gender-and-sexual-diversity

Carpenter, Morgan. ‘Intersex-Related Research Must Have Direct Input from Intersex Community’. Star Observer. 21 October 2015. http://www.starobserver.com.au/opinion/intersex-related-research-must-have-direct-input-from-intersex-community/141997

Carpenter, Morgan. ‘The “Normalization” of Intersex Bodies and “Othering” of Intersex Identities in Australia’. Journal of Bioethical Inquiry 15, no. 4 (December 2018): 487–95. doi:10.1007/s11673-018-9855-8.

Carpenter, Morgan. 2020. ‘Intersex’. In Oxford Bibliographies in Sociology, edited by Lynette Spillman. New York: Oxford University Press. doi:10.1093/OBO/9780199756384-0232.

Deutsch, Madeline B, Jamison Green, JoAnne Keatley, Gal Mayer, Jennifer Hastings, Alexandra M Hall, Madeline B Deutsch, et al. 2013. ‘Electronic Medical Records and the Transgender Patient: Recommendations from the World Professional Association for Transgender Health EMR Working Group’. Journal of the American Medical Informatics Association 20 (4): 700–703. doi:10.1136/amiajnl-2012-001472.

interACT. 2020. ‘Intersex Data Collection: Your Guide to Question Design’. interACT. https://interactadvocates.org/intersex-data-collection/

Intersex Human Rights Australia. 2009. ‘Media and Style Guide’. https://ihra.org.au/style/

Intersex Human Rights Australia. 2016. ‘Demographics’. https://ihra.org.au/demographics/

Intersex Human Rights Australia, Intersex Peer Support Australia, and National LGBTI Health Alliance. 2020. ‘Inclusion Guide to Respecting People with Intersex Variations’. https://darlington.org.au/inclusivepractice/

Intersex Human Rights Australia, Intersex Peer Support Australia, and National LGBTI Health Alliance. 2020. ‘Raising the Bar: How to Be an Intersex Ally’. https://darlington.org.au/inclusivepractice/

Office of the High Commissioner for Human Rights. 2019. ‘Background Note on Human Rights Violations against Intersex People’. https://www.ohchr.org/EN/Issues/Discrimination/Pages/BackgroundViolationsIntersexPeople.aspx

Office of the Privacy Commissioner, NZ. 2018. ‘Handling Health Information of Intersex Individuals’. Office of the Privacy Commissioner. https://www.privacy.org.nz/blog/handling-health-information-of-intersex-individuals/

Yogyakarta Principles. 2017. The Yogyakarta Principles Plus 10: Additional Principles and State Obligations on the Application of International Human Rights Law in Relation to Sexual Orientation, Gender Identity, Gender Expression and Sex Characteristics, to Complement the Yogyakarta Principles. http://www.yogyakartaprinciples.org/principles-en/yp10/

Summary

These issues can be summed up by considering two things. Firstly, how to respect the diverse ways in which people born with intersex variations understand ourselves and our bodies, sexes and genders. Secondly, how to respect our particular kinds of life experiences.

We appreciate thought going into these issues before contacting us, and some explanation of how these requirements may be achieved when you contact us.