Intersex Human Rights Australia

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“.

Gold Coast photographer Minna Burgess shared Baby M’s story in 2015. M’s mother Jane says:
“We hope to give M enough support and guidance that he will always feel comfortable and never ashamed of himself. My biggest wish for M is happiness and acceptance. I just want him to be happy.”
Photograph kindly shared with permission from Minna Burgess.

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.

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.

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.

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.

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.

Resources

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

• Baby M’s Story by Minna Burgess, photo documentary, Queensland
• Raising Rosie: Our Story of Parenting an Intersex Child by Eric and Stephani Lohman. 2018. London: Jessica Kingsley Publishers.
• Raising an intersex child: ‘This is your body. … There’s nothing to be ashamed of’ – Stephani and Eric Lohman talk with CNN
• ‘You can’t undo surgery’: More parents of intersex babies are rejecting operations – Ori and Kristina Turneer talk with NBC News
• ‘I am Not Brave, I am Just a Mother’: What is it like to be a Single Parent of an Intersex Child​ the story of Koushumi Chaktraborti and her adopted child, Shanaya, reported by News18.com, India.

Resources about parenting intersex children:

• Supporting an intersex teenager, a resource by ReachOut Parents published in October 2019
• United Nations for Intersex Awareness
• Supporting your intersex child, a toolkit by OII Europe
• What we wish our parents knew a guide by interACT Youth (USA)
• Letter to parents of children with congenital adrenal hyperplasia and “ambiguous genitalia” in English by Brújula Intersexual (Intersex Compass)
• Come and talk with folks at Intersex Human Rights Australia.
• And also talk with folks at Intersex Peer Support Australia, a peer support group for people with all kinds of intersex variation, and parents

Documentaries, art and stories by intersex people:

• The YOUth&I intersex youth anthology, with stories, poems and art by intersex youth published in 2019 and 2021
• Orchids: My Intersex Adventure, film, Australia, 2010
• Intersexion, film, NZ, 2012

Fiction:

• Golden Boy by Abigail Tarttelin, young adult fiction
• None of the Above by I W Gregorio, young adult fiction

 
We also recommend the UN site United Nations for Intersex Awareness

More information

• YOUth&I stories, poems and art by intersex youth, edited by Steph Lum
• 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.