Your child: intersex for parents

Identification documents
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”.

Bodily diversity is natural

It’s ok to feel uncertainty and concern for the future; these are feelings that all parents share. With your love and support, your child is as capable as any other of growing up to be happy, healthy and successful.

Like any child, intersex kids may grow up to identify in ways that are not expected. What matters most is that you love and accept your child.

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.

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. They are known to have damaging consequences for intimacy and sexual function in later life.

Surgeries are also unlikely to create physical normality. Gonadectomies create a need for lifelong hormone treatment; genital and other surgeries always damage nerve tissue. 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.

We believe that children should grow up free to make their own choices about irreversible changes to their bodies.

Shame and secrecy create unhealthy outcomes for your child and your entire family. Acceptance is healthy. Honesty and openness are the best gifts that your family can share. If your child’s characteristics are presented in a simple, matter-of-fact manner, then your child will understand them in this way.

Announcing a birth

Often, the first thing people might ask is if your child is a boy or a girl, and this can feel scary 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 defer any more detailed questions with a simple statement like: “our beautiful baby arrived at 6.20 this morning”, “welcome to our new family member [name]” and “we’re proud to welcome [name] to our family!”

Some possible scenarios could involve disclosing a diagnosis or testing, but bear in mind that these ‘out’ your child: “we’re naming our baby [name] and they have [diagnosis]”, “my healthy child has an intersex trait”, or “my baby is healthy and happy but we need to find out more to decide which sex to raise them.”

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.

More about this video at United Nations for Intersex Awareness

Choosing a sex

In the society we live in, assigning your child male or female is appropriate. Choose whichever seems predominant, based on the information available to you. Sex assignment does not actually require surgical or hormonal treatment.

Recognise that, like any child, this assignment might change in future. Most importantly, don’t feel pressured to make decisions fast. 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. This can include interventions based on presumed gender identity. Research published in 2016 has shown high rates of early school leaving due, in part, to the impact of medical interventions during puberty.

We believe that surgical and hormonal interventions need to be evidenced, and carefully justified, based on the long-term interests of the recipient. 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. The support that we offer is constrained because we depend on volunteers, but we’re happy to do our best to help – without judgement – 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 syndrome (AIS), 5-alpha-reductase deficiency, mosaicism, hypospadias, Turner syndrome (X0), Mayer-Rokitansky-Küster-Hauser syndrome (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 Turners 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. Contact with other people with similar diagnoses 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 male or female, and more accepting of people who understand ourselves in different ways. There are challenges for all of us, but the future looks welcoming.

Resources

A parent talks: this piece for television, broadcast by SBS in March 2015, includes an interview with a parent.

Read about this story here, and read a follow-up article here.

We also recommend the UN site United Nations for Intersex Awareness

More information

Related resources

Intersex for allies introduces intersex issues to a broad audience. Available to read online, or download as a PDF and print.

Employers’ guide to intersex inclusion developed in collaboration between OII Australia and Pride in Diversity in 2014. Written by Morgan Carpenter and Dawn Hough, the guide was kindly sponsored by IBM and is a world-first.

Making your service intersex-friendly is a short guide to help services build intersex-inclusive practice. It helps organisations and businesses to better understand intersex, and respond to community needs. Businesses and institutions will find ways of making services inclusive and respectful, including in data collection.