The diversity and demographic characteristics of intersex people are not widely understood. An independent 2015 survey of 272 people born with atypical sex characteristics has provided us with good statistical information for the first time. The survey was led by Dr Tiffany Jones of the University of New England, and it was published in February 2016. It shows very diverse understandings of intersex bodies, sexes and genders.
On other pages:
Sex assignments and gender identities
This data demonstrate the complexity of assigning (and reporting) a legal sex at birth for people born with atypical sex characteristics. Initially, 52% of respondents were legally assigned female, 41% were assigned male, and 10% of respondents selected other options. The “Sex now” data show personal identification at the time of the survey: 52% of respondents indicated that they were female, 23% indicated that they were male, and 25% selected a variety of other options. Multiple choices were possible.
It is clear that one single legal sex classification is not appropriate for all intersex people. It is also clear that we are more likely to reject the sex of rearing or be gender fluid than the general population. One quarter of respondents had sex markers or gender identities other than female or male. Conversely, 75% are female or male, and these classifications or identifications also need respect.
48% of respondents stated that they were heterosexual, while 22% selected bisexual, 15% queer. 10% of individuals stated asexual, while the same percentage “prefer no label” and 4% prefer “another label”. Multiple choices were possible.
The data shows that people born with atypical sex characteristics are more likely to be non-heterosexual than the general population, and we may also be more likely to be asexual.
Additionally, there is a clear need to recognise that many intersex people are heterosexual. As with transgender populations, this means that many “LGBTI” people are heterosexual.
Respondents had more than 35 different variations, including 5-alpha-reductase deficiency, complete and partial androgen insensitivity syndrome (AIS), bladder exstrophy, clitoromegaly, congenital adrenal hyperplasia (CAH), cryptorchidism, De la Chapelle (XX Male) syndrome, epispadias, Fraser syndrome, gonadal dysgenesis, hyperandrogenism, hypospadias, Kallmann syndrome, Klinefelter syndrome/XXY, leydig cell hypoplasia, Mayer- Rokitansky-Küster-Hauser syndrome (MRKH, mullerian agenesis, vaginal agenesis), micropenis, mosaicism involving sex chromosomes, mullerian (duct) aplasia, ovo-testes, progestin induced virilisation, Swyer syndrome, Turner’s syndrome/X0 (TS), Triple-X syndrome (XXX).
The words people use to describe our bodies and sex characteristics vary significantly. Overall, 60% of respondents use words including the term intersex; a proportion describe as “having an intersex variation” or “having an intersex condition”. The use of diagnostic labels and sex chromosomes is also common.
As is the case for all stigmatised minority populations, language choices vary from person to person, and depending on where used. It is particularly notable that only 3% of respondents use the clinical term “disorders of sex development” to describe themselves, while 21% use that term when accessing medical services. From our perspective, this shows a perceived need to disorder ourselves to obtain appropriate medical care.
While 2% of the Australian population fail to complete secondary school, that was true of 18% of the survey population. This appears to be due to bullying on the basis of physical characteristics, and the impact of coercive “normalising” medical interventions during puberty. Conversely, those respondents that completed secondary school are better qualified than the general population, particularly at postgraduate level.
41% of respondents were in the lowest income bracket, earning less than $20,000 per year, and 63% earn under $41,000 per year. For comparison purposes, the ABS report that the median full time income at the time of the survey was $80,000 and the figure for “All employees average income” was just under 60,000 ($59,576).
Medical interventions and health
The study researcher found “strong evidence suggesting a pattern of institutionalised shaming and coercive treatment”.
60% received treatments on basis of sex characteristics, half at under 18 years of age.
The majority experienced at least one negative impact from treatment.
44% reported institutional pressure to ensure correctly gendered behaviour; 43% reported this from parents.
60% had thought about suicide, 19% had attempted it (the Australian average is less than 3%).
Respondents broadly rejected standard medical practices on children with intersex variations.
65% of respondents who answered a question on marriage and relationships had never legally or formally married. 12% of respondents are legally recognised as married in Australia. 8% of people had married overseas (6%) or in Australia (2%) but their marriage is not recognised here. 1% were widowed, and 14% are separated or divorced.
Overall, 62% of respondents were in a relationship or dating. 65% of participants in the survey said that “their variation (or related treatments) impacted on their sexual activities”.
Aboriginal and Torres Strait Islander descent
4% of participants in the survey were of Aboriginal and Torres Strait Islander descent. There were no distinct trends differentiating these respondents from other survey respondents.
More summary information is available on this site.
The following papers outline many of the statistics on this page:
Jones T. The needs of students with intersex variations. Sex Education. 2016 Mar 11;16(6):602–18. Available from: http://www.tandfonline.com/doi/full/10.1080/14681811.2016.1149808
Jones T. Intersex and Families: Supporting Family Members With Intersex Variations. Journal of Family Strengths. 2017 Sep 7;17(2). Available from: http://digitalcommons.library.tmc.edu/jfs/vol17/iss2/8
The full data comes from a 2015 survey, licensed by Creative Commons. The license for the survey states: This work is licensed under a Creative Commons Attribution 4.0 International license (CC BY 4.0). This license allows you to share, copy, distribute and transmit the text; to adapt the text and to make commercial use of the text providing attribution is made to the authors (but not in any way that suggests that they endorse you or your use of the work). Attribution should include the following information:
Tiffany Jones, Bonnie Hart, Morgan Carpenter, Gavi Ansara, William Leonard, and Jayne Lucke, Intersex: Stories and Statistics from Australia. Cambridge, UK: Open Book Publishers, 2016. http://dx.doi.org/10.11647/OBP.0089
The full report is currently unavailable, but we hope it will become available again very soon.