Intersex people are born with physical, hormonal or genetic features that are neither wholly female nor wholly male; or a combination of female and male; or neither female nor male.. Intersex variations are not abnormal and should not be seen as ‘birth defects’; they are natural biological variations and occur in up to 1.7 per cent of births.
Common intersex variations and their frequency are provided below:
- Klinefelter syndrome (47,XXY) - (1 in 448 births)
- Triple X syndrome (47,XXX) - (1/947 births)
- Turner syndrome (45,X) - (1/1893 births)
- Complex hypospadias – (1/2000 births)
- Vaginal agenesis (MRKH syndrome) – (1/6000 births)
- Complete androgen insensitivity syndrome (CAIS) - (1/13,000 births)
- Congenital adrenal hyperplasia (CAH) – (1/16,000 births)
- Complete gonadal Dysgenesis – (1/30,000 births)
- Partial androgen insensitivity syndrome (PAIS) – (1/130,000 births)
- 5α-reductase deficiency – (N/A)
Most intersex people are not born with atypical genitalia; however this is common for certain intersex variations. In these cases a decision is made about what sex the child should be raised as shortly after birth. Intersex advocacy groups believe intersex children should be raised as either male or female, but that surgeries to remove physical ambiguities should not occur until the child can provide informed consent.
Intersex is not about sexual orientation, gender identity or being gender diverse. Intersex people have the same range of sexual orientations and gender identities as non-intersex people. Many intersex people identify with the sex they were raised and are heterosexual. Others identify with the sex they were raised and are attracted to people of the same sex or are bisexual. Some intersex people reject the sex they were assigned at birth and identify as the opposite sex, as gender diverse or as neither male nor female.
People with intersex variations experience a range of issues. In childhood, issues range from access to medical treatment, disclosure of clinical treatments made in infancy, lack of counselling and support for parents, and genetic counselling. Issues for adult intersex people relate to living with earlier non-consensual medical treatment, being infertile, disclosing their intersex status to partners, having relationships, and physical conditions connected with their specific intersex variation.
The term intersex is widely used in some contexts however, some people with intersex variations do not describe themselves as being intersex and object to the term, preferring instead to use the name of the medical condition relating to their sex characteristic variation. It is important to respect each individual’s choice of descriptor.
Discrimination on the basis of someone’s intersex status is prohibited by federal anti-discrimination legislation.
Key issues for services
Health services should consider the following issues:
- adverse, potentially lifelong health impacts of conducting surgeries on intersex children and/or giving them hormones to ‘normalise’ their genitals and remove gonads
- understanding what intersex is and the difference between intersex and sexual orientation, intersex and trans, and intersex and gender diversity.
- not assuming all health issues are related to a person’s intersex status; services should understand which potential health issues and questions are clinically important given a person's particular intersex variation.
Frader, J., Alderson, P., Asch, A., Aspinall, C., Davis, D., Dreger, A., Edwards, J., Feder, E. K., Frank, A., Hedley, L. A., Kittay, E., Marsh, J., Miller, P. S., Mouradian, W., Nelson, H., and Parens, E., 2004, Health care professionals and intersex conditions, Archives of Pediatrics & Adolescent 158(5):426-428.
Rosenstreich, G., Comfort, J., and Martin, P., 2011, Primary health care and equity: the case of lesbian, gay, bisexual, trans and intersex Australians, Australian Journal of Primary 17(4):302-308.
Jones, T., Hart, B., Carpenter, M., Ansara, G., Leonard, W. and Lucke, J. (Feb. 2016) Intersex: Sorties & Statistics from Australia. Cambridge, UK: Open Book Publishers DOI: 10.1164/OBP.0089