Intersex for Parents

Whilst the majority of babies born appear to have characteristics which can be clearly  grouped into categories we call ‘male’ or ‘female’, for some babies it is not so clear. The word intersex is simply a descriptor for a person who has natural variation in their sex characteristics (hormones, chromosomes, gonads, or genitals). For some parents it can be confusing and perhaps even frightening to find out their child is intersex. Our society is preoccupied with biological sex and gender and this is particularly true when it comes to having a child. Often before a baby is born, people ask if it is a boy or a girl. Parents often talk about their children in terms of their sex, yet very few people talk about what it is like to have an intersex child.

Discovering that your child is intersex can be a distressing experience for many parents. However, there are support services, such as AGA available to parents and families of intersex people, as well as crises services that offer help and support. Support services can be more limited to families of intersex people, but they are out there, including at AGA.

Parents  of an intersex child  may experience a lot of pressure to make life-changing decisions about their child. It is important for parents to seek appropriate support and resources and to be able to slow processes down, despite this pressure. Decisions made on behalf of the child can have permanent ramifications that may impact their physical and mental wellbeing in the future. While some decisions are necessary to preserve the life of a child with an intersex variation, most surgical interventions are made purely for cosmetic reasons (to surgically alter the appearance of the genitals so that they visually conform to expectations of ‘male’ and ‘female’).

Sometimes these surgeries are recommended for reasons such as ensuring ‘quality of life’. It is very important to ascertain whether clinicians, doctors and surgeons are framing interventions as being necessary for the physical health and wellbeing of a child, as opposed to what they deem will make a child’s life easier from a social perspective. If there is no clear health benefit and the only motivation for offering this intervention is to ‘correct’ a perceived ‘abnormality’; parents have every right to question cosmetic surgical interventions.

Nevertheless, it can be really difficult to make  decisions when  health professionals may be telling parents that their child will benefit from a medical intervention. The best thing parents can to do in this situation is to seek as much information and resources to help inform their own decision making. An important question parents can ask is to establish what would be the outcome if an intervention did not go ahead.

Where possible it is best to ensure children are able to make their own decisions later in life. While the promise of a “normal” life can feel reassuring, without being able to know what choices  a child might make for themselves, it cannot be guaranteed that parents/professionals will make the right decision for them either. Many intersex adults report that having these decisions made for them without their consent was a deeply traumatic experience, which often caused irreparable damage.

When there is a realisation that a perfectly healthy child’s quality of life might be seriously altered because they do not fit into the binary sex categories of ‘male’ and ‘female’, then this should motivate society to change, as opposed to changing the child to fit in.

Silence can lead to a huge amount of shame and confusion and can disempower intersex children from being able to make consensual decisions about their body. Having open discussions, in age appropriate ways, can support intersex children to work through their issues and feel confident about their bodies.

It is unlikely that intersex children will be able to ask questions about their experience without the language or knowledge to do so. Starting a dialogue early, and normalising  the topics of body and gender, can be helpful for them in this process.

It can be important for children in understanding that all people are physically varied and unique, and that gender can be complicated and experiences of gender can change over time. It is also important to recognise that gender does not necessarily have to correlate with peoples’ physiological sex characteristics. It is good for parents to keep visiting the conversations as children grow and develop so they continually receive age appropriate information as they mature.

Key Points

• It is normal for parents of intersex children t to experience a range of different emotions. It is important to seek out support and have access to appropriate resources.
• It is crucial to seek out information in order to make the best possible decision about surgical intervention.
• Care should be taken to ensure that an intersex child is able to make informed decisions about their own body. This may include deferring medically unnecessary surgery for fear of “abnormality”.
• Start conversations with children early so they feel supported to articulate their needs and talk through their experiences.
• Keep the conversation ongoing, open and age appropriate.