This fact sheet is for the parents of people born with intersex variations/innate variations of sex characteristics and is not intended to give legal advice.
When a child is born with innate variations of sex characteristics there can be a lot of pressure on parents to start making decisions for their child right away. In situations where parents weren’t expecting an intersex child, or haven’t come across information about intersex people before, the rush to make the right decisions can cause a lot of distress and confusion, and the intersex variation may be viewed as inherently negative or detrimental. Unfortunately, this is not helped by the fact that in many situations the birth of an intersex child can still be treated as a medical emergency, even when it is not. Doctors may also seek out a diagnosis and may push for treatment in a relatively short space of time. In reality, the majority of intersex births are not a medical emergency, and are not cause for concern. If an intersex variation is not detected until later in life, there may still be some situations where parents face these same pressures.
The health of your child has priority over all other things, and occasionally, a variation may present health concerns that must be addressed. Unless a medical intervention is intended to urgently preserve the life of an intersex child, all other decisions you make can either preserve the choices an intersex child may make for themselves one day, or take decisions away from them. Where possible, medical intervention should be deferred until the child is able to engage in the process and make meaningful, consensual, decisions for themselves.
When you are learning new information for the first time, processing what you have been told, or are feeling overwhelmed by a situation or circumstances you were not prepared for, you will probably not be well positioned to make informed and considered decisions. It is of course, completely normal to feel overwhelmed and uncertain, and it is important that you are supported to ask for more time, information and space to make important decisions, and to self advocate for the agency of yourself and your child. While parents make these decisions to the best of their ability, with the best information and intentions they have, this power dynamic unfortunately doesn’t always produce the best possible outcomes for intersex people.
Decisions that are made early in an intersex person’s life are often influenced by assumptions about how they’re going to grow up, how they’re going to understand and relate to their body, and that they would make the same decisions for themselves. While it can be the case, in most situations no urgent decisions need to be made. In situations where an intersex person grows up wishing different decisions had been made for them, it is not possible to undo what has happened. Often these ‘proxy decisions’ can take away options and decisions the individual would otherwise have had available to them. Where it is not possible to delay or defer these kinds of decisions it is best to focus on choices that preserve options for the individual.
You may be managing a whole range of emotions and concerns outside of the current medical sphere such as concerns for your child’s future happiness, friendships, career or relationships, concern over potential difficulties they may face or implications for their future health and wellbeing such as their growth and development, mental health or fertility. These are largely normal concerns for any parent, though not having enough information about intersex variations can exacerbate and influence these thoughts.
It is important to know and remember that intersex children have every potential to grow up happy, healthy, and to live full and rich lives without unnecessary hardship. This is especially true when their needs are addressed and rights understood and protected. There are many happy, successful, and flourishing intersex children, teenagers and adults. Connecting to peer support and Intersex human rights groups can put you in touch with other families and individuals, and be incredibly beneficial when managing these sorts of concerns or anxieties.
Extensive writing has been produced about the rights of the child internationally, and without laws to explicitly protect those rights in Australia, it becomes the responsibility of the parent to protect those rights. Most importantly to those with intersex variation, is recognised the right to bodily integrity, physical autonomy, and self-determination.
Bodily integrity maintains the right to be left whole and unharmed. In most cases, early intervention on an infant or child involving significant physical alterations, carries lifelong consequences for the individual. Genital surgeries are often cosmetic in nature. These surgeries can cause scarring and nerve damage that reduces sensation and impairs function. They can also result in complications requiring additional surgical revisions which also come with these same risks. Removal of the gonads is often urged to mitigate cancer risk despite limited and outdated evidence, necessitates a reliance hormone replacement therapy for the rest of a persons’ life, also resulting in sterility, where this may not have been the case prior to surgery. Alternatives such as routine monitoring of the gonads, allows the gonads to be left intact, and in situ if they are healthy, rather than preemptively removing healthy tissue. Each individual’s situation is unique, and as such all decisions should be thoroughly considered and made on a case-by-case basis. Making unnecessary choices on behalf of your child denies them the opportunity to have ownership over their body and choices later, especially in circumstances where they would have made different decisions. Unfortunately, even with the best intentions, parents/carers cannot know how their children may feel in the future. You should always ask for information about alternatives and options when considering decisions with such implications, consider deferring treatment until the individual can consent, or where decisions must be made, to opt for choices that preserve rather than limit future options.
Physical autonomy is the right to make decisions about your own body. This isn’t just about the right to agree or disagree to treatment, but also tests and physical examinations. Intersex people are often treated as a curiosity. Some of the most traumatic memories that intersex people live with are to do with feeling that they were put on display or touched in ways they didn’t or couldn’t consent to. It is vital to create space to say no, and then uphold that in a medical setting, understanding that children may not feel confident to speak out against the authority of a doctor.
Self Determination recognises that any decision made now on behalf of a child may not be one that child would have made for themselves. Doctors may suggest a sex of rearing that may be recorded on a birth certificate, but there is no guarantee that a child will grow up to understand themselves in the same way, even if all reasonable measures were taken to determine the best option at the time. Decisions that are made to reinforce that sex of rearing can often take opportunities away from the child later in life when they seek to present themselves differently.
Protecting these fundamental human rights does not in any way compromise your rights as a parent, but instead recognises the needs of your child in a way that produces the best possible opportunities for them.
There may be situations where you have to make a decision in the interest of protecting the rights of your child. Sometimes medical intervention is necessitated to help preserve future decision-making possibilities. Other choices may be about the day-to-day practicalities of raising a child. The decisions you make now as a parent will eventually impact the decisions a child feels able to make later. Keeping information, medical records, details of treatment and doctors visits can all help provide important information to someone who grows up with intersex variation.
At some point your child will be expected to transition from paediatric services to adult services and this information becomes vital to understanding their healthcare needs as an adult. It can also provide transparency and accountability that can help build understanding around the experiences that they’ve had. Keeping information all in one place can save an immense amount of research and personal cost later. It can also be helpful to answer any questions they have in the future.
When to disclose or hand over this information comes down to when a child may be ready to receive that information. If they’re asking questions about medical experiences or differences in their body. If they’re able to understand and process information about intersex already. Bear in mind that, much like how you may have found yourself without much context or information about intersex when your child was born, that without some disclosure or guidance your child is unlikely to learn about intersex on their own.
A significant number of challenges that intersex people face don’t come from living with an intersex variation, but come from the way that intersex is understood and treated socially. How you choose to understand intersex and approach conversations about bodily diversity will have a significant impact on the mental health and wellbeing of your child.
Medical intervention is often justified on psychosocial grounds, the assertion that difference is punished by society, and it is better to make these differences disappear rather than embrace them. How this looks when talking to doctors include arguments about school bullying, parental attachment, even ideas around being able to stand up to urinate as crucial to male development. These arguments instead reinforce outdated ideas about intersex can be something to be ashamed of and should be kept secret.
Psychosocial support should instead focus on acceptance and resilience, personal boundaries, and challenging the ideas that support typical traits over diverse traits. How you talk about intersex can be internalised by children and young people. That is to say, intersex can be viewed as a disorder if you talk about it like a disorder and intersex may be considered abnormal if you talk about it like it’s abnormal. Similarly, if all your child hears when intersex is discussed, is the need for surgery, surgery becomes the default way to manage being intersex. These are ideas that can be inherently harmful and lead to decision-making that is later regretted. Individual healthcare needs, desires and values will vary. As such individuals should be supported to make their own choices and decisions that account for this.
Mental health support and peer support can also help round out the support of doctors, especially where bullying and discrimination is experienced. A psychologist can help with family dynamics and disclosure, or navigating some of the tricky feelings that can come up as an intersex person. Peer support offers an affirmative environment where other people may not have the same intersex variation as your child, but many of the same experiences and empathy that comes from living in similar circumstances. With a rich source of common knowledge and collective wisdom, peer support should be considered vital to psychosocial development.
Many parents talk about an immense pressure to make urgent decisions based on very little given information when intersex traits are first noticed in their child. Infants may in some cases be taken away from a family for assessment and diagnosis, or while a treatment pathway is put forward. When this is the first time that a parent has heard about intersex, there can be a tendency to take the presented information at face value and to not question if other relevant information may be missing from the conversation. This can lead to understanding intersex as a problem and medical intervention as the solution. While it may feel like you have been thrust into an emergency situation there are a few important things to bear in mind, which are explored below.
Emergency procedures that are vital to immediately preserving the life of a child will largely be taken out of your control. Anything else is not a decision you need to make immediately.
For perspective, any truly urgent or necessary decisions won’t be decisions that you need to make. The decisions put to you are ones that can wait, and that you can request time and information to make. This creates space to understand your child’s needs and their rights, as well as giving you the opportunity to do your own research and understand what is being asked of you. This includes exploring all alternatives, including opting out of medical treatments that are cosmetic or deferrable in the interests of preserving your child’s ability to make decisions for themselves later.
You may have or come across a lot of different ideas about what is deferrable or not.
There are many different justifications presented with medical intervention.
Arguments about quality of life need to be considered carefully against arguments about preserving future decision-making. Meanwhile, arguments that surgery done sooner produces better results should be carefully considered against available evidence. The fewer unnecessary decisions you make, and the more decisions you can defer, the better their opportunity for bodily integrity, physical autonomy, and self-determination will be. Where decision-making is unavoidable, the preservation of future options and choice for your child is critical in protecting these opportunities.
Keeping records of any information you access at this time will not only help your child understand the decisions that were made for them, but also creates better opportunities to look after their own health later. Detailed and organised records help you and your child maintain control over your details, and information in ways that can eliminate or greatly limit difficulties accessing medical records (especially paediatric records) down the track when your child may be seeking out information. It can also be used to build transparency and trust with your child who may be navigating complex emotions about their medical history, decisions made on their behalf, their body or variation/diagnosis.
Try asking:
If you find doctors resistant or hostile to considering anything other than medical intervention, it is worth understanding the experiences of intersex people who are living with the experiences and impacts of having/not having these procedures.
If you have difficulties with a doctor or need to make a complaint, see our “Parent’s Guide to Navigating Difficulties with Doctors”
InterLink psychosocial support service – https://ilink.net.au
InterAction for Health and Human Rights (formerly IHRA Intersex Human Rights Australia) – https://interaction.org.au/
IPSA Intersex Peer Support Australia (formerly AISSGA) – https://isupport.org.au/
These are some of the supports that are available to intersex people in Australia. While not a complete list, contacting these organisations may help you find other intersex-supportive services.
Intersex led organisations –
IPSA Intersex Peer Support Australia (formerly AISSGA) – https://isupport.org.au/
IHRA Intersex Human Rights Australia (formerly OII Australia) – https://ihra.org.au/
Diagnosis specific groups –
The XXY Project https://thexxyproject.org/
Congenital Adrenal Hyperplasia Support Group Australia http://www.cah.org.au/
Turner Syndrome Association of Australia https://www.turnersyndrome.org.au/
Australian X and Y Spectrum Support https://axys.org.au/
The Beech Australian Community (Bladder Exstrophy, Epispadias, Cloacal Exstrophy, Hypospadias and related) https://www.beechac.org/
Mental Health Services –
IF YOUR LIFE IS IN ANY IMMEDIATE DANGER PLEASE CALL 000
General –
Lifeline Crisis Support – https://www.lifeline.org.au/ – 13 11 14
Kids Helpline (Ages 5-25) – https://kidshelpline.com.au/ – 1800 55 1800
Headspace (Youth mental services) – https://headspace.org.au/
LGBTIQA+ Specific-
Switchboard Victoria https://www.switchboard.org.au/
Minus18 https://www.minus18.org.au/
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