This article was written and reviewed by people with intersex variations.
Raising or supporting a teen with an intersex variation can present new challenges as they begin to make their own choices and to define who they are. This article provides some background to help you understand what your teen may be experiencing, information on health and medical care, and links to services that can provide support and guidance.
What does it mean to be intersex?
Intersex people are born with physical features, such as genitals, chromosomes or genetic features, that don’t fit what doctors expect for either female or male bodies. Many people think of ‘intersex’ as a word for a particular kind of body or identity. This isn’t the case – intersex people have many different variations and all kinds of bodies and identities.
Like everyone else, intersex people are determined to be female or male at birth based on their appearance. This is known as sex assignment. If doctors are unsure which sex to assign, they perform tests. Intersex traits aren’t always obvious at birth; they can become apparent during childhood or puberty, or even later in life.
Intersex people learn and choose many different words to describe themselves. These include diagnostic terms, and umbrella terms such as ‘variations of sex characteristics’, ‘disorders’ or ‘differences of sex development’ (DSD). Choosing affirmative words can help you to accept your child and their body. Whatever someone’s variation, it’s only a part of who they are.
What challenges do families of intersex people face?
Even though there are many intersex variations, intersex people and their families have many experiences in common. It can be difficult for your child to look or develop differently from their siblings and friends. It can be a challenge to navigate medical services, and to find the right words to use when talking to your child and others.
Parents have reported being told to hide information about intersex variations from their children and service providers. This can be harmful to your child: it tells them that their body is shameful. Contacting support groups, and getting in touch with other people with similar experiences, can help you make good choices about age-appropriate disclosure and medical treatment.
Parents and doctors of people who look different often fear that their children will be bullied or harmed. Some doctors believe that children need surgery in order to grow up to be ‘normal’, or to prevent others from bullying them. Intersex children who are healthy may undergo physical examinations, surgeries and hormone treatments to make their bodies look more like those of typical girls or boys. Unfortunately, many people have been harmed by these treatments, especially when they weren’t given the choice to have them.
There is no evidence that surgical intervention prevents bullying. People can live happily with all kinds of bodies when treated with compassion and understanding. Most of us just need the love and support of our families and friends. When it comes to surgery, the person with intersex variations should be able to make their own decision about their body and their identity.
Health and medical care
Some treatments may be necessary for the health of an intersex person, but you shouldn’t be asked to consent to treatments intended to make your child’s body appear more typically female or male. Many medical professionals may lack the training and understanding to support the needs of intersex teenagers. It can be a good idea to get a second or third opinion, and to seek support from a counsellor and peer support group.
Many surgeries, especially those involving the genitals, will need follow-up procedures over time, or ongoing care. The experience of repeated genital examinations can itself be distressing. All surgeries can lead to scarring, and to a loss of feeling in and around the affected body parts. As your teen becomes older and sexually active, these issues may become evident.
If you are asked by a doctor to agree to medical treatment of your child, you can choose not to. Before making a decision:
- ask about the treatment’s purpose, necessity, risks and long-term outcomes
- ask about and research alternative treatments, including no treatment
- ask about follow-up treatments, including genital examinations and repeat surgeries
- ask about and research its possible effects on your child’s future sexual function and sensation, and try not to make any assumptions about their future identity and behaviour
- research what human rights organisations and intersex-led groups say about the proposed treatments
- ask to be put in touch with other people with similar experiences
- request detailed, written material on all these issues.
Help your child to assert themselves about their own bodies. Let them know they have the right to say no to treatments if they’re unsure or don’t want them. Let them wait until they are confident and understand their body and its needs, and their identity, before deciding on cosmetic procedures.
Some intersex people have health issues that aren’t about their appearance and identities, including infertility, psychosocial issues, or physical health issues associated with their variations. Sometimes these can feel neglected. It’s important that you and your teen get the support you need. Peer support groups and experienced counsellors can help.
Are intersex people LGBT?
Statistically, most intersex people grow up to be heterosexual and identify with the female or male sex they were assigned at birth. However, just like other people, your child may ‘come out’ as LGBT. This is something to be understood and supported on its own terms. They may be welcomed in LGBT spaces where intersex people are understood and supported. It is important to remember that LGBT identities are neither promoted nor prevented by medical treatment for intersex variations.
Navigating social and family situations
If your teen struggles at school, regardless of whether or not this seems linked to their body, take these issues seriously and seek support. It may sometimes be necessary to disclose some information about your child’s variation to their school. Talk about this with your child. Choose your words together, to avoid misconceptions. If this feels difficult, consider sending information to the school anonymously, or ask an intersex organisation to contact the school.
If past decisions have caused harm to your child, remember that it takes time and understanding to heal. Intersex groups are familiar with these issues and may be able to help.
If your child has siblings, remember that they need care, too. They may resent the attention paid to their intersex sibling, the time taken to deal with their medical appointments, or the existence of ‘family secrets’. Make time for them so that they’re not left out. Check with your intersex child about what you say to their siblings. Have conversations with all your children about privacy and boundaries.
An intersex community is growing in Australia, with regular meetings in most capital cities. Meetings enable people to share their experiences and support each other. These organisations can help you to find out more:
- Intersex Human Rights Australia is a national not-for-profit organisation by and for people born with variations of sex characteristics. They promote the human rights and health of intersex people.
- Intersex Peer Support Australia (also called AIS Support Group Australia) provides peer support and information for people with androgen insensitivity syndrome and other intersex variations, and their families.
- A Gender Agenda in the ACT offers support for people with intersex variations and transgender people.
- Internationally, interACT (US) and OII Europe have great resources available.
- The Darlington Statement sets out the priorities and calls of the intersex movement in Australia and New Zealand.
- For good fiction, read Golden Boy by Abigail Tarttelin and None of the Above by I. W. Gregorio. You can also watch Orchids: My Intersex Adventure.