Understanding Intersex Variations
According to the Australian Bureau of Statistics, approximately 63,300 Australians aged over 16 – representing 0.3% of the adult population – are aware they were born with variations of sex characteristics. This means their bodies do not conform to medical norms of typical female or male anatomy or function. However, experts believe the actual number is significantly higher, as many individuals are unaware of their physical differences or medical history, or never receive a clinical diagnosis.
Some people learn about their condition later in life, while others never do. Even those unaware of their trait can experience health and social impacts from having a body that differs from the norm. Although 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, and any one or more of these may vary during embryonic development. Some traits have no genetic origin. The terms intersex, “differences of sex development,” and “innate variations of sex characteristics” describe a diverse range of traits. These variations can affect chromosome number, reproductive organ development, or the body’s production or response to sex hormones.
Some variations, particularly chromosomal ones, are diagnosed before birth. Many, especially those involving genital differences, are noticed at birth. Other traits may become apparent if puberty does not occur as expected. Many are associated with infertility.
Medicalisation and Health Impacts
Each trait carries its own health and human rights issues, with typical ages of diagnosis, treatment protocols, and sex registration as female or male. Sex registration is based on physical appearance. When sex is uncertain, doctors apply rules based on expected outcomes from surgeries to masculinize genitals, often leading to female registration and feminizing surgeries, on the rationale 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 affecting adrenal hormone production, leading to salt regulation issues and potential genital differences in babies. Girls with this condition and boys with hypospadias frequently undergo early surgeries to conform to gender stereotypes. Children with XY chromosome-associated traits may have variable genital appearance at birth, with surgeries performed in line with sex registration. Infant girls are thought to need a vagina, while boys undergo surgeries to enable standing urination. Early surgeries often require revisions later in life.
Women and others with Turner syndrome (45,X0) have fewer than the typical number of sex chromosomes and face higher risks of heart conditions. Boys and other children with Klinefelter syndrome (XXY) – having three sex chromosomes – may experience developmental delays and benefit from learning supports and decisions about hormonal replacement and fertility from puberty. The Australian Capital Territory and Victoria have enacted laws to regulate many of these medical practices.
Language Has Changed Over Time
The term intersex originated in medicine in the 1920s. In the 1990s, people with lived experience adopted it as they organized advocacy groups. Many individuals start with the medicalized language given by doctors and parents. Those who know their diagnosis use various terms, and it is up to each person to decide what feels right – whether referring to 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 belonging. However, shame, stigma, and not being told their own medical history often prevent people from speaking about their variations at all.
Clinical terms also evolve, and even clinicians disagree on what constitutes “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 the female or male sex registered at birth. However, intersex is often conflated with being transgender, sometimes due to simplistic media reporting or institutional policies. For example, many women and girls with a Y chromosome, registered female at birth and subjected to feminizing surgeries in childhood without consent, are now told they are “biological males” and do not belong in women’s spaces. This conflation also stems from longstanding errors in Australian federal guidelines that wrongly define intersex as people who “identify as neither male nor female,” impacting passports, health records, and other government documents.
In 2020, the Australian Bureau of Statistics established better practices for government data, detaching variations of sex characteristics from classifications of sex and gender. However, federal and some state governments have been slow to implement this change.
Harmful medical experiences, stigma, misinformation, and lack of transparency have made it difficult to talk about being intersex, access safe and informed services, and collect data on the experiences and needs of adults with innate variations. This needs to change. Researchers are inviting people with innate variations of sex characteristics to participate in interviews. For support and community connection, individuals can reach out to InterLink, Intersex Peer Support Australia, MRKH Australia, Turner Syndrome Association, BEECHAC, or AXYS.
