Source: The Conversation (Au and NZ)
Members of InterAction for Health and Human Rights celebrate at the 2026 Sydney Mardi Gras. Morgan Carpenter According to the Australian Bureau of Statistics, around 63,300 Australians aged over 16 – 0.3% of the overall population – know they were born with variations of sex characteristics.
This means their bodies don’t fit medical norms about how female or male bodies should look or function. But the actual number is thought to be much higher, as many people don’t know about their physical difference or medical history, or don’t receive a clinical diagnosis.
Some people learn their medical history later in life. Some never do. People who have a trait but don’t know about it can still experience health and social impacts from having a body that is a bit different.
And while people with intersex variations are included as the “I” in the umbrella term LGBTQI+, they are often overlooked or misunderstood. Having innate variations of sex characteristics is not a sexuality and is not about gender or identity.
What does ‘intersex’ mean? Around 100 genes can influence sex development. Any one or more of these can vary from what is expected when an embryo is developing. Some traits don’t have a genetic origin.
So the terms intersex, “differences of sex development” and “innate variations of sex characteristics” describe a diverse range of traits. These variations can impact the number of chromosomes someone has, how their reproductive organs develop, or the way their body produces or responds to sex hormones.
Some variations – especially chromosomal variations – are diagnosed before birth. Many variations, especially those involving genital difference, are first noticed at birth. Other traits can be identified if puberty doesn’t happen in a way that was expected.
Many are associated with infertility. Medicalisation and health impacts Each trait can come with health and human rights issues. Each trait has a typical age of diagnosis, typical treatment and typical sex registration as female or male.
Sex registration is based on physical appearance. If sex is uncertain, doctors apply a set of rules to make a decision, including expected outcomes from surgeries to make genitals more masculine. This often leads to female registration and feminising surgeries, on the basis that it is easier to “make a hole but you can’t build a pole”.
Early surgery may not align with the child’s future wishes. People with congenital adrenal hyperplasia have a trait that affects how their adrenal glands produce certain hormones. They may have trouble regulating salt levels, and babies may have genital differences.
Girls with congenital adrenal hyperplasia and boys with “hypospadias” frequently undergo early surgeries to make their genitals fit gender stereotypes. Children with traits associated with XY chromosomes may have variable genital appearance at birth, and surgery in line with sex registration.
Infant girls are thought to need a vagina, while boys undergo surgeries to fit a “functional” requirement of standing to urinate. Early surgeries frequently require revisions later in life. Women and others with Turner (45,X0) syndrome have fewer than the typical number of sex chromosomes.
People with this trait have a higher risk of heart conditions. Boys and other children with Klinefelter (XXY) syndrome – where someone has three sex chromosomes, compared to the usual two – can experience developmental delays. They may benefit from access to learning supports, as well as support to make decisions about hormonal replacement and fertility from the age of puberty.
The Australian Capital Territory and Victoria have acted to regulate many of these medical practices. Read more: ACT releases Australian-first draft law to protect intersex children from irreversible medical harm Language has changed over time The term intersex has its origins in medicine in the 1920s.
In the 1990s, people with lived experience of intersex traits adopted the term as they organised their own advocacy groups. Many people start with the medicalised language we’re given by doctors and parents. People who know their diagnosis use many different terms.
It’s up to individuals to decide what feels right, whether that means talking about having an intersex variation, a difference in sex development, or a medical condition. Sometimes, people use different terms in different situations, to avoid misconceptions or build a sense of belonging with others.
But often, shame, stigma and people not being told their own medical history mean they don’t speak about variations at all. Clinical terms also change and shift. Even clinicians disagree on what should be included in the clinical concept of “differences of sex development”.
It’s different to being transgender People with innate variations of sex characteristics may identify as lesbian, gay, bisexual trans or non-binary, or may be heterosexual and identify with female or male sex registered at birth.
But intersex is often conflated with being transgender. Sometimes this is a product of simplistic and unhelpful media reporting. Sometimes this is the product of institutional policies.
For example, many women and girls with a Y chromosome, registered female at birth and subjected to feminising surgeries in childhood in public hospitals without their consent, are now being told they are “biological males” and don’t belong in women’s spaces.
Sometimes this is a product of longstanding errors in Australian federal guidelines, which have wrongly defined intersex as people who “identify as neither male nor female”. This impacts passports, health records and other government documents.
In 2020, the Australian Bureau of Statistics set out better practices for government data. Its standard detaches variations of sex characteristics from classifications of sex and gender. But federal and some state governments have been slow to implement this change.
Harmful medical experiences, stigma, misinformation and lack of transparency have all made it hard to talk about being intersex, difficult to access safe, informed and accessible services, and hard to collect data on the experiences and needs of adults with innate variations.
This needs to change. We are inviting with people who have innate variations of sex characteristics to participate in research interviews. Visit our website for more information.
For support and community connection, people with lived experience can reach out to InterLink, Intersex Peer Support Australia, MRKH Australia, Turner Syndrome Association, BEECHAC or AXYS.
Morgan Carpenter leads the Interconnect Health Research project at the University of Sydney, and is also a lived experience lead.
The project is funded by the Medical Research Future Fund. He also works part time as the Executive Director of InterAction for Health and Human Rights.
He is a member of the Australian Capital Territory’s Restricted Medical Treatment Assessment Board and has been contracted to the UN Office of the High Commissioner for Human Rights, the ACT government, and the Australian Institute of Health and Welfare.
He is a member of advisory groups for the New South Wales government.
Bonnie Hart is founding service manager of the intersex psychosocial support service InterLink, the Deputy Executive Director of InterAction for Health and Human Rights.
Her role of Research Fellow (Intersex Psychosocial Models of Care) at University of Southern Queensland incorporates the work of being a Chief Investigator and a Lived Experience Lead with the Interconnect Health Research Project which is funded by the Medical Research Futures Fund.
She has a long-time affiliation with Intersex Peer Support Australia and has provided expertise to a number of Queensland and federal government, and NGO advisory groups.
Ingrid Rowlands is a Senior Research Fellow in the Population Health Program at QIMR Berghofer and an Honorary Research Fellow in the School of Public Health at the University of Queensland.
She is an investigator and a lived experience lead on the Interconnect Health Research Project, which is funded by the Medical Research Future Fund.
Original source: https://analysis1.mil-osi.com/2026/06/24/what-people-with-intersex-traits-want-you-to-know/