Supporting your

intersex child
Created by IGLYO, OII Europe & EPA
Contents
Introduction: What is intersex? 2
Advice for parents 4
Common questions 6
Making decisions in relation to medical
interventions 14

Talking to your child about being intersex 18

Talking to others about your child being
intersex 22

Questions others may ask 24

Talking to teachers, doctors and other
professionals about your child being intersex 26
Glossary 30
Useful links and resources 34
IGLYO, OII Europe & EPA 36

1
 Introduction
What is intersex?

Is it a boy or a girl? This is the question that is asked

the world over when someone gives birth. Many
parents will answer that question without much
thought. But for a significant number the answer
will be more complex.
Intersex is an umbrella term used to describe a wide range of natural bodily
variations. Intersex individuals are born with sex characteristics (for definitions,
see Glossary, P30) that are either female and male at the same time, not quite
female nor male, or neither female nor male. Intersex people’s sex characteristics
and bodies are healthy variations of the human sexes.

For some intersex people, their intersex body becomes visible at birth, for some
during childhood and with others their body shows itself to be intersex during
adolescence or even adulthood. For some, the differences will be so small they
may never realise they are intersex at all.

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There are many ways in which variations of sex characteristics can appear.
A child may be born with a larger clitoris or smaller or differently shaped penis.
Sometimes a child is born looking typically female, but is discovered to have
internal testes, and sometimes a typically male looking child is found to have a
uterus or ovaries. In some cases, a girl will not start to menstruate or a boy will
start to menstruate. Other children may have a hormonal setup that is different
than what is expected for a “girl” or a “boy”.

These kinds of variations are natural and more common than you might think.
It is estimated that at least 1 in 200 people are intersex and some sources state
that up to 1.7% of people have some variation in their sex characteristics.

Sex characteristics can be divided into primary sex characteristics

and secondary sex characteristics.

Primary sex characteristics are all the characteristics that are

present at birth. These include the person’s chromosomes,
genitals, reproductive systems, gonads and hormone sensitivity
and production.

Secondary sex characteristics are all the sex characteristics

that become visible during puberty and include breast growth,
hair growth, menstruation, Adams apple, stature, muscle mass
and fat distribution.

This guide has been created by IGLYO, OII Europe and EPA. It aims to introduce
the topic, give advice on how to best support your intersex child, and where to
get further information. In the following text, we will use ‘they’ (rather than he
or she) as the neutral pronoun for everybody, fully acknowledging that a diversity
of genders exists.

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 Advice for Parents
Finding out that your child is intersex may come
as a surprise to you. You may feel and think many
things as a result of the news.
You might simply feel utter joy that your child is born or you may start worrying
about your child’s or adolescent’s wellbeing. You may be told that your child is
not healthy. As with male and female children and adolescents, intersex children
and adolescents may face health issues, but this does not define who they are.
They are, first of all, your child, who will need your love and attention, will laugh
with you and make you angry sometimes. When they grow older they will make
their own choices in life as who they are: another proof of nature’s diversity.

Here are some tips to help process the information and prepare you to provide
the support your child, like any other child, will need.

There is nothing wrong with your child

For the vast majority of intersex people, there is nothing physically wrong with
them and there is no need for any medical interventions. If your doctor tells you
that medical treatment is necessary, ask about the health implications and risks
both of carrying it out and of doing nothing. Then take time to make an informed
decision. Always get a second opinion and carry out your own research.

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It’s not your fault
When parents find out there is something different about their child, one of the
first thoughts is often, ‘Did I do something wrong?’ or ‘Could I have prevented
this?’ Having an intersex child is completely natural and is not the result of
anything you have done. There is nothing to feel ashamed of.

It’s ok to feel confused or upset

When we have certain expectations, especially around something as major as
having a baby, it is understandable that we experience many different emotions
when something unexpected happens. Finding out your child is intersex might
make you feel scared, angry, upset, worried, ashamed, guilty or a mixture of
some or all of the above. Many of these feelings are caused by the unknown and
will lessen as you learn more about intersex and talk to others about it. Try not
to suppress feelings, even if they are challenging. Find people you can talk to
and can provide you with the support you need. Ask the hospital or your medical
practitioner about the options to get psychological support. Reach out to
organisations to get more information and advice. Speak with family or friends,
if possible. You need to look after yourself, otherwise you won’t be in a good
position to look after your child.

You are not alone

It’s easy to feel like you are the only person in the world going through this and
that no-one else will understand. The truth is there are an increasing number of
intersex organisations that can provide information, signpost to support groups
(physical and online), connect you with intersex peer councillors and connect
you with other parents of intersex children. Talking to other people who have
intersex children can provide you with information, advice and support. Talking
to others is an important step in ‘coming out’ as an intersex parent. Don’t feel it’s
a secret you need to keep, as this is not good for you or your child. If you live in a
country where you feel coming out would not be safe for you and your child we
encourage you to connect with OII Europe, who can help you to find parents who
are in a similar situation with whom you can talk.

You don’t need to know all the answers

Over time, as you tell your child and others around you, you will be faced with
a lot of questions. This can be overwhelming and create a sense of having to
become an expert in the subject overnight. It’s ok not to know all the answers
straight away. At the same time don’t shy away from the subject. The more you
learn about it and discuss it with others, the better placed you’ll be to support
your child when they start asking questions too.

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 Common Questions
How will I find out if my child is intersex?
You might find out when your child is born, during puberty, or during
adolescence. There are different ways to find out, depending on the specific
variation. Sometimes a child is visibly intersex from birth. This however is not
always the case and your child may well be discovered to be intersex after birth
or later in life through various means, including:
• Blood tests shortly after birth
• Routine medical examinations such as sonograms on your child’s abdomen
• Routine operations in childhood such as hernia repair and appendectomy
• Puberty may be different than for the child´s peers.
• Occasionally a parent will know as early as pregnancy due to pre-natal
screening
• People find out they are intersex at all ages

My child is intersex. What now?

Variations occur everywhere in nature. Being intersex is one of them and it is
nothing to be afraid of. One of the most important things is to be open with your
child (in an age appropriate manner) and to listen to what your child tells you
about their needs. There will be some challenges on the way, of course. One will
be that most people still don’t know a lot about the existence of intersex people,
so you might need to find ways to introduce the subject and educate people on
the specific needs and situation of your child. For example, to support/advise
school staff in preventing your child from being teased at nursery or school.

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Parents who are open about their child being intersex report that, most often,
the people they tell are interested to learn more and willing to support the child.
As parents, you basically set the tone for how others will treat your child. For you
(and your partner), it may take some time to get used to the idea and to learn
what having an intersex child means. Give yourself this time. In the process,
you might be asked to take some difficult decisions, such as being asked to give
consent to irreversible surgeries or other medical procedures, but remember
that unless your child needs medical attention as a matter of urgency (which is
rarely the case), you should get advice from more than one source and take time
before reaching any definite course of action.

Do I need to consent to surgery before registering my child

as male or female?
Before, when, or after you register the sex of your child, you might be advised
by medical professionals, family or friends to consent to medical treatment that
changes your child’s body towards a more female or male appearance. These
‘normalising’ surgeries, however, can be highly traumatic for those involved and
often lead to ongoing medical problems throughout their lives. Some common
arguments in support of such interventions include:
• Not operating will increase the risk of cancer
• It is better to operate on the child at a very early age,
so that the child will not remember the interventions
• Early intervention is less risky/more successful
• Interventions will reduce social pressures and help the child ‘fit in’ better

Before you consent to any surgeries or medical interventions, it is important

to know that no scientific evidence to support these arguments currently exist.
This means that no one has carried out research to prove that such surgeries
have had a positive impact on the children and young people who have
undergone them compared to intersex people who did not.

Ask yourself: would you have wanted your parents to make a decision in
regard to your body that is irreversible, that could have been deferred and
that you might not be happy with as an adult, or would you rather they waited
to seek help and allow you to grow up and take your time to understand how
you feel about your body?

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 My new born is intersex. What is likely to happen at the hospital?
If your child is discovered to be intersex at birth, your post-delivery experience
is likely to be different than most parents:
• Your child may possibly be removed from you immediately or shortly
after birth for varying lengths of time. Always ask where your child is being
taken, why they are being removed, and when they will be returned to you.
Ask to go with them if possible.
• Instead of routine check-ups by doctors, and interactions with nurses
or midwives, you will likely meet some specialists. These can include
for example a paediatric endocrinologist, a paediatric surgeon or other
specialists. You may meet them one at a time, or you may meet them
as a group. There will likely also be nurses and other hospital
staff present.
• It is likely that you will either receive a lot of new information that is hard
to understand or receive requests for allowing your child to have various
tests. Much of the information you receive will be in complex medical
language. If there is anything you don’t understand, ask for clearer
explanations and ask if any tests are necessary before consenting.
• The medical team at your hospital may suggest a variety of medical
treatments, surgical and other means. These include gonadectomies
(the removal of ovarian or testicular tissue) and various genital surgeries.
Postpone all surgeries that are not life-saving and seek secondary advice.

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There are many experimental treatments taking place at different hospitals.
Some of these have already been found to have worrying long-term side effects
on mental health and cognition. These include pre-natal drug administration as
well as hormone manipulation of young children through hormone treatments
administered via injections or gels.

• If your baby has for some reason been removed from you ask that they be
returned immediately.

• Ask for any testing to take place in your presence and ask about the reasons
for the tests before giving consent. (If, for some reason, a blood test is
needed, it will be much easier for your baby for this to take place with you
present, ready to soothe them).

• If possible, call a loved one or a trusted person and ask them to join you. This is
a strenuous time for all new parents and you will have more to keep track of than
most. Having someone to help by taking notes and giving a helping hand can be
very beneficial. Ask if discussions can be postponed until this person arrives.

• Write down or record as much information as you can. Recording your

conversations means you don’t have to worry so much about taking
notes and most phones today come with built-in voice recorders or have
applications you can download. In the case you are alone after the birth of
your child, recordings can provide a valuable alternative to a second person
when later recalling information.

• Ask questions, ask for explanations, and ask for clarifications. Take your time.
You cannot make decisions without understanding. It sometimes takes us a
longer time to grasp new concepts and terminology and you have an absolute
right to understand what is going on.

•  sk about when you can go home. A home environment is a much better

A
environment than a hospital ward for bonding with your new-born. In most cases,
you should be able to go home in a similar time frame as other parents. If for
some reason, this is not the case, ask why. If the reason is that they are waiting
for test results to come in, then ask if you can still go home and come in for a visit
when they come in. Press for an answer as to why you cannot go home.

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 Doctors are pushing me to make a very fast decision.
What should we do?
Immediately after birth you (and your partner) are likely to be filled with
conflicting emotions. Furthermore, childbirth itself causes significant changes
in hormone levels, affecting how we feel. These two factors alone mean it’s
not an ideal time to be taking big decisions, let alone decisions that can greatly
affect your child’s future. In some cases, however, doctors will offer immediate
treatment or surgery. Occasionally there is a need for immediate treatment,
these will be discussed further in the next chapter. While some medical
treatments are necessary for your child to maintain health (See Making decisions
in relation to medical interventions p14), the majority of treatments cannot be
rationalised solely based on medical need but are rather based on social and
cosmetic factors.These include surgeries to change the appearance of your
child’s outer genitals because they do not look like most people’s genitals, or so
your child can perform a gendered social function, like standing up to urinate if
they have been assigned male. These also include surgeries to create vaginas
in infants assigned female so that they can fulfil certain social roles. These are
elective treatments and your child has a right to choose these for themselves
when they are old enough to make that decision. In the meantime, seek support
and reach out to intersex organisations, as they may be able to connect you
with other parents that have similar experiences. Remember, your child is an
autonomous being relying on you for protection, support and most of all love.
Shower your child with affection and enjoy getting to know them.

I hear different opinions about what I should do with my child.

How do I know what’s best?
Every situation is different. You always need to put the wellbeing and the health
of your child first. Also, don’t forget the wellbeing of yourself and your family.
Talk with experienced people, including intersex adults, and explore options.
Be critical of advice which focusses only on changing your child physically.
Don’t let people push you into a quick decision. Most decisions can be deferred
until your child is mature enough to be included in the in decision making
processes. Take time to research, reach out to intersex advocates for support
and concentrate on getting to know your beautiful new child.

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Wouldn’t it be easier for everyone to operate while my child
is still a baby?
Whilst having surgery or other medical procedures when your child is still a baby
might be presented to you as the best option, it’s important to know what the
longer-term consequences could be. First, it’s important to be aware that any
full anaesthetic surgery is a life-threatening action. Especially, but not limited to,
surgeries that are performed on infants and young children. Second, there is the
possibility that your perfectly healthy intersex child will lose the functionality of
the operated body part, such as their urethra during a non-life saving normalising
surgery. No long-term studies exist yet on the actual preservation of everyday
and future erotic function of genitals that have been operated on at an early age.
To the contrary, many intersex people that have been subjected to surgeries
in childhood have reported numbness and pain (due to scar-tissue) and a lack
of or limited erotic sensation as adults. Third, medical interventions often
lead to further interventions being necessary and sometimes result in lifelong
dependency on doctors. Furthermore, psychological research has shown that
the pain memory is already developed in infants, and intersex people who were
operated on as babies often report that they felt that something had been
done to them even though they could not point to it until much later. Finally,
normalising interventions do not change an intersex body to become a ‘male’
or ‘female’ body, they simply alter the appearance to make them look/function
as such to varying degrees of success.

If we decide not to allow any medical interventions or surgery, will my

child’s body be fully functional?
Many intersex people who have not had any surgery or medical interventions
have perfectly healthy bodies. According to the few studies that exist, most
intersex people who have undergone normalising surgery have a whole range of
health issues related to these treatments. Unless there are serious health risks, it
is highly recommended to wait until your child is old enough to be involved in the
decision-making process.

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 How should I register my child’s gender on their birth certificate?
The fact that we live in a society that, for the most part, still does not legally
acknowledge the diversity of human sexes will put you under pressure to register
the child as either male or female in most countries. Different countries have
different regulations regarding if and when a sex marker must be entered into
official registries and this can vary from a few days to weeks or even months.
You should not feel pressured to enter a marker before this period ends. In
countries where only male or female options are available, intersex organisations
recommend that parents assign the sex which feels most appropriate, but
understand as the child grows up this may need to be changed to fit with their
gender identity.

In which gender should I raise my child?

Intersex organisations recommend that you raise your child as male or female,
as currently this is how our societies are structured. At the same time, you
should keep in mind that your child might develop a gender that is not in
accordance with the sex and gender you chose. There is nothing wrong with
this - it is simply your child telling you who they are when they are old enough
to express their individual personality.

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Is it a disability?
Being intersex is a form of body diversity. Being intersex is neither a disability nor
a long-term physical impairment. Intersex people who have been subjected to
surgery and other medical interventions, however, often do have health issues
because of these interventions that qualify as disabilities.

Should I tell my child that they are intersex?

Yes. Intersex individuals who are now adults and were raised in shame and
secrecy have spoken very clearly about how these experiences negatively
impacted their personal life, their family life, and their relationships with their
parent(s) or carer(s). On the other hand, families who have established a culture
of speaking openly with their children about their bodily diversity report how
positively this openness has impacted on their family life and the self-confidence
of their child and adolescent. You can choose age-appropriate explanations.
The most important thing is to let your child know that you love them exactly
the way they are.

Should I tell others?

The decision to tell others is a personal choice, but you should also think about
how it could affect your child later in life. Keeping it a secret from everyone and
not talking about it at all, however, is unlikely to be good for you or your child.
Like any other personal information, think about who you trust and who it
might be beneficial to tell. In fact, when it comes to your child going to nursery,
kindergarten or school you will need to disclose this information up to a certain
degree to make sure that your child can be open about being intersex with
others. This can be challenging, so we encourage you to seek support to take
care of your own wellbeing. Many parents that have chosen to disclose this
information, however, have reported a significant positive impact, which helped
them to raise their child in a safe and empowering environment. Remember,
you don’t have to answer all questions, especially those which are too private.

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 Making decisions in relation
to medical interventions
The first question you should ask yourself is: Why do
I think that my child needs medical interventions?
Is it because my child is suffering from a physical condition that actually
threatens their life? Below are some examples of conditions where immediate
treatment or surgery may be necessary, followed by conditions where
immediate intervention is not proven to be necessary.

1. When immediate intervention may be necessary

Salt Wasting
Salt wasting can occur with a bodily variation that is called Congenital Adrenal
Hyperplasia (CAH) by medical professionals. Both children who are assigned as
girls and boys can suffer from salt wasting. Immediate medical intervention is
needed to substitute the lacking minerals within the child, but afterwards they
will usually be out of danger within 24 hours. Monitoring and medication to
prevent future incidents may also be necessary.

Closed Urethra
If your child is born with a closed urethra, urine cannot leave the body. In such
cases, immediate surgery might be needed to prevent your child’s body from
poisoning.

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2. When immediate intervention is unlikely to be necessary

Removal of Gonadal Tissue

Sometimes doctors tell parents that gonadal tissue (the tissue of which the
testis and ovaries are made). should be removed to prevent potential cancer.
The percentage of intersex people, however, who have developed gonadal cancer
has never been properly verified, as gonadal surgery for intersex people has
been performed as standard for decades. In other words, there are not enough
intersex people who have not had gonadal surgery to prove such a risk. To make
a comparison, the risk of developing breast cancer does not mean that doctors
recommend all women to undergo mastectomies as standard, but rather that
routine screenings take place to monitor for any signs of cancer. Removing your
child’s ovarian or testicular tissue will also remove their ability to go through a
natural puberty. Furthermore, if a child’s gonads are removed they will have to
undergo hormone replacement therapy to induce puberty. This means regular
visits to a doctor all through your child’s adolescence. For various reasons, some
young people do not adhere to their hormone treatments, which can cause further
complications. Hormones are vital to bone health and not taking hormones after a
gonadectomy has a high risk of leading to osteopenia or osteoporosis – conditions
where a person’s bones become brittle. Many intersex adults, including some
adolescents, report cases of osteopenia and osteoporosis.

Genital Surgeries
We all have certain expectations of how female or male genitals look, but rarely
have opportunities to see the wide range of variations that exist. In most of our
societies, we are taught that genitals should be hidden, so our impressions are
limited to what we seen in biology textbooks or in different media. The genitals
of intersex babies and children are operated on and cosmetically altered in a high
number of cases. Reasons given for such surgeries include the desire to enable
the future adult to:
• Fit better with society and grow up as male or female
• Have a healthy sexual life by having genitals that function more
in line with societal expectations
• Reproduce and have a family

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 Some intersex people are subjected to surgical and other medical interventions that
aim to guarantee them the possibility of becoming pregnant or to procreate. Many
who were subjected to these measures as children grow up to report that, mentally
and physically, they felt like violations of their body, even up to the degree of being
comparable with sexual abuse. They also report that this treatment destroyed any
wish to have sexual relations in adulthood. Some medical practitioners have raised
their voice against early intervention from a purely medical perspective arguing that
the physical results will be much better when the body is grown up more and when
the patient is pursuing the treatment by their own will.

Conclusions
In a very small number of cases surgeries may be essential and non-deferrable,
but many non-essential surgeries may be presented to you as otherwise.
Make sure you have as much information as possible and some time to reach
a decision before agreeing to any medical procedure. Most intersex activists
and organisations strongly recommend that no non-essential or normalising
surgeries or interventions are carried out before the individual is old enough to
make an informed decision themselves. Once your child is old enough, they
may decide to go ahead with some medical procedures, but this is very different
to learning that interventions were carried out on you as a baby or young child
without your consent.

Doctors have often told parents that not performing normalising surgeries or not
strictly defining their child’s gender will lead to psychological problems. There
is virtually no evidence, however, that this is the case. An increasing number
of intersex people who have not had medical interventions are speaking out to
show that surgery is not necessary and that they are living healthy and happy
lives. Sadly, the psychological damage of having intrusive and often painful
interventions at a young age is also widely documented from intersex people
who have undergone such interventions.

If a doctor tells you that surgery or another type of medical intervention is

necessary, ask them to:
• Explain in detail what needs to happen and why
• Outline the risks of both taking action and of doing nothing at this stage
• Tell you where you can get more information

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After an appointment with a doctor who recommends medical interventions:
• Reach out to an intersex organisation or a parent´s group for advice,
information and support.
• Get help finding a doctor who can give a second opinion.
• Do your own research, review your notes, and make sure you fully understand
everything that was said during the appointment.

If your child or you decide that medical intervention is necessary:

• Ask the doctor to explain what will happen in detail
• Ask the doctor to tell you if further interventions will be needed and the
risks associated with them
• Ask the doctor what psychological or other support is available for your
child (and you) if necessary
• Seek advice, information and support from an intersex organisation

A family, who had migrated to Europe from Latin America, reported

the following situation. When their child was born, their child’s
penis was not as long as usually expected for a boy. The medical
practitioner took the father aside and delivered the – in his opinion
– bad news. He also told the father that his child might suffer from
a disorder of sex development and that a more detailed diagnose
would follow. Assuming that the father would be most desperate
about the manhood part of the issue, he also tried to provide a
comforting solution by telling the father that if they wished the
genital could be reduced further and the child could be raised as a
girl. The reaction of the father was quite different than expected
though. He started yelling at the doctor, forbidding him to go
any further and pointing out that all men in his family have had
this penis size for generations and all had grown up to live happy
married lives.

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 Talking to your child about
being intersex
Although it’s important to not make your child feel
different in a negative way or for them to worry
about being intersex, not talking about it at all can
be equally problematic.

How and when to talk with your child

Although it might seem ‘safer’ to not mention it until they are older, hiding things
from your child as they grow up may lead to a bigger shock when they eventually
do find out.
• Try to answer all questions that arise in an age-appropriate manner, so that
your child will be prepared for everything new that they’ll learn.
• You don’t have to explain biological terms to your child from a very young
age, but you can start gradually introducing ideas of difference by telling
them things like not all girls are the same
• Prepare your child for challenges and difficulties along the way, but assure
them that you will be there for them and that you’re in this together
• Also remind them during difficult times, that everyone faces challenges
and upsets when growing up
• Keep in mind that your child will grow up to be completely autonomous
one day, and they need to know all the facts from early on, to be able to
make their own decisions later in life.
• Also, keep in mind that honesty will help you to have a healthy relationship
even throughout and after the most challenging teenage years. Your child
realising that you were dishonest with them may damage your relationship
and cause serious difficulties within your family. For many intersex young
people, finding out that those closest to them lied is a traumatic experience
and can lead to longer term issue with trust. Children have a right to and
deserve to know the truth about themselves.

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Minimising and dealing with shame
• Although you might want to plan how you and your child tell other people
about them being intersex (see Talking to others about your child being
intersex, p22), be careful not to turn it into a secret. If your child thinks it’s
something that needs to be hidden from others, it can lead to them feeling
that there is something wrong or shameful about them.

• Let your child know all the facts about their bodies in a positive way,
explaining that everybody is different, and that people can be healthy
and happy without having to fit into strict categories.

• Try not to emphasise that being intersex is rare or uncommon, as this

can lead to feelings of isolation.

• Think about experiences or situations which may be different for your

child and think about how to discuss them in a supporting way.

• If your child decides to be open about being intersex, support them. If they
do not feel like it, let them know that you support this decision too.

• Don’t assume your child’s identity or tell them what it will be. Like all
children, their gender identity and or sexual orientation may be different
to what you expect.

• Many people are not aware of the diversity that exists within our societies,
let alone the existence of intersex people. You might want to prepare your
child for that situation and there are many tools available to help. The most
important thing is to build self-confidence and make your child feel comfortable
with- and even be somewhat proud of- their body. It is also important that your
child knows they have parents who love them exactly the way there are and
who will always support them.

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 Decision-making
•  lthough it might feel like making decisions and taking action early on will be
A
better for your child in the long run, the experience of many intersex people
shows that the opposite is true. Waiting until your child is at an age that they can
make their own decisions or be involved in the process is more likely to have a
positive outcome. Children start to express their own opinions around two years,
so you should involve your child in decision making as soon as they are able.

• Make sure that doctors do not overwhelm you or your child. This might
simply happen due to medical terminology they use, a sense that they are the
experts in this situation, or not knowing enough information. Where possible,
bring a friend or family member with you that you and your child trust to help
you discuss the possibilities and reach decisions.

• Discuss all the possibilities with your child, leaving surgery as the last option
(unless there are immediate health implications).

• Share all the information about risks and possible outcomes in an age
appropriate manner.

• Give them access to their own medical records/history. They have the
right to know.

• Answer all their questions. Research the subject and empower them to do
their own research too. Teach yourself and them how to do good research –
how to identify valid information and avoid being misinformed.

• Reassure your child that they’re the one who knows best how they feel
about their lives and their bodies, but that there is help and support available
if they need it.

• Involve your child in conversations with the doctors. Encourage them to

ask questions and to critically review advice and information.

• Empower your child to be in control of any medical examinations or

interventions, and that their consent needs to be given at every stage.
Research and teach them their patient rights.

• When it comes to medical examinations make sure the medical professionals

involved know that your child is intersex.

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• Unless your child is older and requests otherwise, you should always
be present during all medical examinations your child may need.
• Give your child time and space to prepare for and deal with things
like medical examinations that can be daunting.
• Overall, trust your child – they are more capable of responsible
decision-making than you might think.

Support
• Remember that you are not alone and that you and your child may need
some additional support from others at various stages.
• Let your child know that there are various support options available to them,
including intersex groups, counselling and therapy, and that getting help when
you need it is not a sign of weakness, but a positive step in looking after yourself.
• Encourage your child to find and join support groups, if they want to. Let
them know that sharing experiences and life stories with other intersex
people is one of the best ways to help them realise the possible outcomes of
their decisions, and find a safe place to explore what being intersex means.
Young people who use social media can be directed to online support groups.
Before your child joins a support group, however, do your research to ensure
that they are approved by an intersex organisation.
• As a parent or carer, there will be times when you need additional support too.
Although there might not be a specific group for parents of intersex children in
your area, look for other relevant parents’ groups or join an online group.

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 Talking to others about your
child being intersex
Consent
Children start to express their own opinions around two years, so you should
involve your child in decision making as soon as they are able. Ask them how
they feel about talking to other people about them being intersex. Remind
them that there is nothing to be ashamed of, but you want to make sure that,
when they feel ready to tell others, they understand what kind of reactions
they might get and how they will deal with them. It’s also important to agree
who else can tell people, who they can tell and how this is done. Any personal
information about a child or young person should be managed carefully, with
them always feeling in control of who knows and when. It’s also useful to discuss
terms and language to agree on what words are used and how it is explained to
others. Please keep also in mind that your child might think differently about the
subject during different stages of their life and that this conversation should be
revisited at all significant milestones (starting a new school, moving to a new
neighbourhood/city, joining a new group/club).

Be proud
When talking to others about your intersex child, don’t talk about it as if it’s a
secret or something to be ashamed of. Although you might receive negative
or awkward reactions from others, the more you are able to show that there
is nothing wrong, the more people will realise that the only problem is their
preconceptions or lack of knowledge on the subject.

The more that parents of intersex children are open and proud,
the more awareness and understanding there is within our
societies, which is beneficial for all.

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Be patient
For other people, the topic of intersex might be new and they might not
understand at first. Take your time to explain what it means to be intersex.
Explain that is it common and completely natural. Be prepared for awkward or
inappropriate reactions and questions and try to respond calmly and positively.
Most people will not mean any harm, but are just unsure how to respond due to
lack of awareness. Use simple terms and language that’s easy to understand.
At the same time, it is not your sole responsibility to educate others. If someone
is asking too many questions, tell them that you too are still learning, but can
signpost them to resources if they are still interested.

Talking to other family members

If you have other children, it’s important to talk to them about what it means
to be intersex. Through general conversations around difference and diversity
you can gradually introduce what it means to be intersex. As well as teaching
your intersex child how to positively respond to bullying or teasing it is also
important to teach siblings to do the same, as they might also experience it
through association. When it comes to older family members don’t assume
that they will be necessarily more difficult to talk to. For example, values such
as treating everyone with respect or accepting what life presents us with can be
used to appeal to individuals with more traditional beliefs. Even if you experience
reluctance from a family member to accept or discuss your intersex child, give
the person time and ask other family members who have been accepting to
help you speak with them. Encourage them to learn more about being intersex
through articles, documentaries or personal accounts. The more they know
about the subject, the more likely they are to become accepting and supportive.

Be an ally
If your child is comfortable with you doing so, try to raise awareness about
intersex people wherever you can. Find opportunities to bring up the topic of
intersex with different groups of people or post relevant articles or personal
accounts on your social media channels. If people say something inaccurate
or offensive about intersex people, try to correct them in a polite and friendly,
but firm way. Another possibility is to join or support an intersex organisation
to help increase visibility in society and progress intersex rights.

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 Questions others may ask
Is your baby/child a boy or a girl?
How you answer this will depend on how you are raising your child. If you are
raising them as a girl or a boy, you can simply say so. If you know the person
well or feel comfortable doing so, you can answer that they are intersex and
you are raising them as a boy or a girl. If you are raising them without defining
their gender at this point, you can say that you are raising them in a gender-
neutral way.

Did something go wrong?

No, it is perfectly natural. It happens to at least 1 in 200 children with some
sources stating that up to 1.7% of children can have some variation of sex
characteristics. It is just not widely spoken about in society.

Does that mean your baby is a hermaphrodite?

No. Hermaphrodites have full sets of both male and female organs, and that’s
impossible in humans. They just have variations in their sex characteristics
which do not meet medical norms of male and female bodies.

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Is it a type of disability/disorder?
Intersex is just another diversity found in humans, no different to variations in
hair colour or height. It only becomes a disability if you treat intersex people
differently and don’t give them the same chances as you would with
non-intersex people.

What does your baby/child’s genitals look like?

Suggestion for strangers: Don’t you think this is a strange question? It is not
so common to ask how someone’s genitalia look. Even the youngest children
have the right to privacy.
Suggestion for family members: They look absolutely fine.

How will it affect them growing up?

Many intersex children will grow up without needing any medical interventions
or any specialist support as long as they are surrounded by people who love and
accept them for who they are. Being different in any way tends to lead to higher
incidences of bullying or discrimination, so the main issue is ensuring that there
is greater understanding and acceptance of intersex people in all areas of your
child’s life.

Will it affect who they are attracted to?

There’s no link between sex characteristics and sexual orientation, so intersex
people can be lesbian, gay, straight, bisexual or any other sexual orientation.

Intersex people and gender identity

Many intersex people identify as women or men and often also agree with the
gender marker they were assigned at birth. Sometimes intersex people who
have been assigned a gender at birth, may realise that this is wrong for them as
they grow up. This means they will probably want to change their name and how
they present themselves to fit better with their gender identity. Others may not
identify as a woman or a man (non-binary gender) and express both or neither
aspect of what is considered traditionally masculine and feminine. Two intersex
people who share the same sex characteristics may have different gender
identities.

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 Talking to teachers, doctors
and other professionals about
your child being intersex
At various points in your child’s life, you will have to
make decisions about which professionals will need
to know that your child is intersex and how you
approach this with them.
It is important to involve your child in the decision-making process as soon as
possible. Very young children can voice preferences and opinions, if they are
asked in the right way. While your child will not be able to a handle all aspects
of decision making at a very young age, it is important that they start handling
the aspects they can as soon as they are able. This will empower them and give
them a stronger feeling of control over their own life. In this chapter, you will find
some pointers for planning and having discussions with teachers, doctors and
other professionals/adults who will come into contact with your child.

1. Doctors and medical staff

The first professionals you and your child will be involved with are most likely to
be doctors and medical staff. Making decisions about medical interventions has
already been covered (see p14), so the following will focus on regular check-ups
and other appointments.
• When choosing a doctor for your child, check if they are informed about
intersex people or at least open to learning. Make sure you feel comfortable
with them before taking your child to register with and meet them. If your
child is older, encourage them to be part of the screening/selection process,
letting them decide if it’s the right doctor for them
• Make a list of questions in advance of the meeting and take notes during
the meeting as a reminder. You might also want to record the conversation,
with the permission of your doctor, so you can come back and listen to the
conversation again for clarification of points you did not quite catch during
the appointment. If this is not possible then ask the doctor to write down
any words, terms or phrases you do not fully understand

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• Always consult your child if they want you to be with them in the doctor’s
office or not. Generally, parents are present unless asked explicitly by the
child not to be. Make it clear that this is the child’s choice.
• Ask the doctors where you can find more information about your child’s
particular biology. Provide the doctor with resources you have already found.
• Make sure to make copies of your child’s medical records: documents and
results of medical tests.
• Be there with your child and do your best to prevent any unnecessary tests
or visitations from doctors who don’t really need to examine your child.

If a medical professional recommends any type of surgery, then ask them to

explain if it is important for the child’s physical health or if it is ‘cosmetic’ in
nature. Do not settle for vague answers such as “it´s going to be better this way”,
always ask for clear information. Record the information or take notes. Always
seek a second opinion, try to reach out to intersex organisations or parents of
intersex children.

2. Teachers and school staff

Younger Children
There may be no need to discuss anything with school staff at all. This depends
on your child and your personal situation. If your child is open to talking about
being intersex and is likely to mention it in school, then it is best to speak with
their teacher and the head of the kindergarten, nursery or school in advance.
You should check what they know about being intersex (or more likely be ready
to signpost them to information about it), discuss the possible scenarios that are
likely to arise and agree on how they should be handled. If your child rarely gives
being intersex a second thought and therefore seldom or never mentions it,
there may be no need to inform school staff at this point.

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 If your child needs to take medication or needs any specific facilities for
changing/using the bathroom, then plans to deal with this should be agreed
with the necessary staff. Remind school staff that your child has a right to
privacy and that any information disclosed should be treated confidentially,
only being shared with those who need to know. Inform yourself on regulations
and guidelines that are in place in your area.

Older Children
Before starting high school or college, have a talk with your child about how they
would like the situation to be managed. Encourage them to think about the pros
and cons of different approaches and what some of the consequences may be,
so they can make an informed decision. If they decide that a meeting with the
school or institution before they start is the best plan, encourage them to be
involved in the meeting and support them to take a lead in the discussions by
planning what they want to say and preparing for any questions that are likely
to be asked.

It’s good to ask the school if they have a bullying policy and to discuss how
they deal with incidents. It’s also worth asking about pupil support and what
services or groups are available to learners that might be helpful.

If your child wants to be open about being intersex, discuss different ways
of raising the subject with staff and agree on how they can support your child
to do this in a way that feels positive and safe. Think about ways that you and
the staff can check in with your child in a non-intrusive way to ensure they
aren’t experiencing any negative consequences of being openly intersex.
If your child doesn’t want to disclose they are intersex or chooses only to do
so to a few trusted individuals, talk through how to manage this and how
they would deal with someone finding out accidentally.

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3. Other professionals
Other professionals who might be involved in your child’s life could include
social workers, youth workers, sports trainers, religious leaders or psychologists.
Disclosure of your child being intersex generally follows similar guidelines as
disclosure to teachers. Take into consideration how much time your child spends
with the person in question and in what context. There is generally no need to
discuss your child being intersex with many of the above professionals unless
your child is likely to instigate the discussion or wants to tell them. Apart from
this, the only other reason it may need to be discussed is if there are any specific
requirements for your child, such as a private changing facility.

If your child needs to see a psychologist or other mental health professional,

then it is advisable to discuss this with them and your child before their first
appointment. Not all mental health professionals will have knowledge on being
intersex, so may require some information or guidance around dealing with the
topic. When discussing it, watch the person’s reaction. Most professionals will be
happy to learn something new, but if the person reacts in a way that makes you
feel uncertain, you can either discuss this with them to get reassurance or seek
an alternative practitioner. Also, listen closely to your child’s feelings about all
professionals they come into contact with. Children are usually able to voice an
opinion on if they want to see someone or not from a very young age.

If your child attends a place of worship, you may want to discuss it with relevant
individuals. Again, this will depend on your personal situation and how you engage
with your faith. You may personally want to seek out support from a leader within
your congregation, or your child may have a trusted individual they want to inform.

4. Conclusions
Depending on the age and maturity of your child, you should aim to include your
child in all of these conversations. Very young children may not be at the stage
of participating fully in the conversations, but it is good to involve them from
the beginning to give them the choice as to how much they want to contribute.
If they are not interested in being part of the discussions or find it awkward or
embarrassing, let them know what you will say and check if they are happy with
how you plan to represent them. Also, don’t assume that because they didn’t want
to be involved in one discussion that this won’t change over time. Always give them
the option to participate without putting any pressure on them to do so.

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 Glossary
Chromosomes
A thread-like structure of nucleic acids and protein found in the nucleus of most
living cells, carrying genetic information in the form of genes.

Disclosure
To reveal something personal about yourself to another, such as being intersex

DSD – Disorders of Sex Development (or Differences of Sex Development)

The term DSD was introduced in 2006 and has since then been used by medical
professionals to refer to intersex bodies. Some intersex people use these terms
when referring to themselves. A growing number of intersex people consider
DSD terminology to be stigmatizing and prefer to use the term intersex.

Dyadic
Consisting of two parts or two elements, a binary.

Gender
Refers to a social construct which places cultural and social expectations on
individuals based on their assigned sex.

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Gender expression
Refers to people’s manifestation of their gender identity to others, by for instance,
dress, speech and mannerisms. People’s gender expression may or may not match
their gender identity/identities, or the gender they were assigned at birth.

Gender identity
Refers to each person’s deeply felt internal and individual experience of gender,
which may or may not correspond with the sex assigned at birth, including the
personal sense of the body (which may involve, if freely chosen, modification
of bodily appearance or function by medical, surgical or other means) and other
expressions of gender, including dress, speech and mannerisms.
Some people’s gender identity falls outside the gender binary, and related norms

Genitalia
A person’s sexual organs

Gonads
A testis, ovary or ovo-testes

Hermaphrodite
An out of date term often used to describe intersex people. Today it is generally
considered derogatory.

Intersex
A term that relates to a range of physical traits or variations that lie between
stereotypical ideals of male and female. Intersex people are born with physical,
hormonal or genetic features that are neither wholly female nor wholly male; or
a combination of female and male; or neither female nor male. Many forms of
intersex exist; it is a spectrum or umbrella term, rather than a single category.
That is why intersex activists frequently prefer to use the term sex characteristics
(for example, when talking about grounds that can be protected against
discrimination). There is not one static state called ‘intersex status’, so using the
term sex characteristics reflects the fact that being intersex is a bodily experience
and only one part of a person’s identity.

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 LGBTQI
An acronym for Lesbian, Gay, Bisexual, Transgender, Queer and Intersex.

Non-binary
A term used to describe people whose gender identity falls outside or in
between the traditional categories of male and female.

Sex
The combination of a person’s bodily characteristics including: chromosomes,
hormones, internal and external reproductive organs, and secondary sex
characteristics. In most countries this is still limited to the binary of female and
male, which can exclude intersex people

Sex characteristics/Variations of sex characteristics

Sex Characteristics is a term that refers to a person’s primary sex characteristics
such as: chromosomes, anatomy, hormonal structure and reproductive organs
or a person’s secondary sex characteristics which become apparent at puberty
such as: breasts, facial and pubic hair, Adam’s apple, muscle mass, stature and
fat distribution.
The term ‘variations of sex characteristics’, therefore, is seen by many activists as
a more accurate term than ‘intersex status’, as it refers to a spectrum of possible
characteristics instead of a single homogenous status or experience of being
intersex.

Sexual orientation
Refers to each person’s capacity for profound affection, emotional and sexual
attraction to, and intimate and sexual relations with, individuals of a different
gender or the same gender or more than one gender.

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Trans
Is an inclusive umbrella term referring to people whose gender identity and/or
gender expression differ from the sex/gender they were assigned at birth.
It may include, but is not limited to: people who identify as transsexual,
transgender, transvestite/cross-dressing, androgyne, polygender, genderqueer,
agender, gender variant, gender non-conforming, or with any other gender
identity and/or expression which does not meet the societal and cultural
expectations placed on gender identity.
Intersex people may or may not identify as trans, when rejecting the sex
that was assigned to them at birth.

Many of the above definitions have been kindly supplied from ILGA Europe’s
online glossary.

33
 Useful links and resources
European Intersex Organisations

OII Europe
www.oiieurope.org
www.intervisibility.eu

Young & Intersex

www.facebook.com/Youngandintersex

European LGBTQI Organisations

IGLYO
www.iglyo.com

ILGA Europe
www.ilga-europe.org

Transgender Europe (TGEU)

www.tgeu.org

European Parents’ Organisations

EPA
www.euparents.eu

European Association for Children in Hospital

www.each-for-sick-children.org

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Useful Resources & Articles
Standing Up for the Human Rights of Intersex People
www.goo.gl/NQmPSa
www.goo.gl/fS3pXU

Promoting the human rights of an eliminating discrimination against intersex

people, resolution of the Parliamentary assembly of the Council of Europe
www.goo.gl/wZHFgW

Council of Europe report: Promoting the human rights of and eliminating

discrimination against intersex people
www.goo.gl/eHjPsx

Council of Europe Paper: Human Rights and Intersex People

www.goo.gl/gc6QdN

Council of Europe: Resolution on Children’s Rights to Physical Integrity

www.goo.gl/XDjjxs

United Nations Convention on the Rights of the Child

www.goo.gl/SAAouz

Universal Declaration of Human Rights

www.goo.gl/zwnieT

EACH Charter
www.goo.gl/QJ4SGe

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 About
IGLYO
www.iglyo.com
IGLYO – The International Lesbian, Gay, Bisexual, Transgender, Queer & Intersex
(LGBTQI) Youth & Student Organisation is the largest LGBTQI youth and student
network in the world with over 90 member organisations in 40+ European
countries.
IGLYO’s objectives are to:
• build young activists
• increase the visibility and highlight the diversity of LGBTQI youth identities
• make education safe and inclusive for all
• develop and sustain an engaged and connected network of member
organisations
IGLYO achieves these objectives through an extensive programme of international
trainings and events, online capacity building, youth representation and participation,
digital storytelling and campaigning, and our LGBTQI inclusive education project.
IGLYO aisbl is registered as a non-governmental organisation in Belgium
(No. d’entreprise: 808808665).

OII Europe
www.oiieurope.org
OII Europe (Organisation Intersex International Europe) is the umbrella
organisation of European human rights based intersex organisations with
member organisations in all Council of Europe regions. OII Europe was founded
on Human Rights Day, 10 December, during the Second Intersex Forum at
Stockholm in 2012.
OII Europe is an autonomous affiliate of OII (Organisation Internationale des
Intersexués), a decentralised global network of intersex organisations, which
was founded in 2003 and has operated since then through its national groups
in every region of the world.

36
OII Europe’s goals are:
• full implementation of human rights, bodily integrity & self-determination
for intersex people
• legal prohibition of non-consensual medical & psychological treatment;
medical practitioners or other professionals should not conduct any
treatment to the purpose of modifying sex characteristics which can be
deferred until the person to be treated can provide informed consent
• promotion of self-awareness, visibility and recognition of intersex people
• full protection against discrimination & the adoption of sex characteristics
as a protective ground
• education of society on intersex issues from a human rights perspective

EPA
www.euparents.eu
EPA gathers the parents associations in Europe which together represent more
than 150 million parents. EPA works in partnership both to represent and give to
parents a powerful voice in the development of education policies and decisions
at European level. In the field of education, EPA aims to promote the active
participation of parents and the recognition of their central place as the primary
responsible of the education of their children.
• EPA supports the participation and collaboration of parents in many
educational respects by:
• Gathering and disseminating information by means of EPA publications
including, newsletters, seminar reports, EPA website, discussion forums.
• Highlighting innovation in educational partnership and spreading information
about interesting and innovative educational practices.
• Promoting parents’ ongoing support and training.
• Supporting research in all fields relating to the participation of parents
in the educational environment.
• Collaboration with various partners in the broad field of education.

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Funded by This guide has been produced with the financial support of the Dutch
Ministry of Education Culture & Science and the Rights Equality and
Citizenship (REC) programme 2014-2020 of the European Union. The
contents of this publication are the responsibility of IGLYO, OII Europe
& EPA and can in no way be taken to reflect the views of the Dutch
Ministry or the European Commission.