Welcome

Perhaps you are a parent of an XXY child seeking answers to puzzling questions, or maybe the child is having a difficult time with Testosterone, and you are trying to understand why. From the experiences of XXY’s who contribute here, we hope you will gain greater insight into the impact Testosterone can have on an XXY body and, in the process, realise hormones are not the be-all and end-all. More positive outcomes are possible when the child is better informed of the effect. Additionally, we hope your overall experience will be positive, and you will share this with others.

Perhaps you are an XXY adult who has been using Testosterone for many years, and you like its impact on your overall self. You might describe it as the missing piece of the jigsaw and wish you had been able to access Testosterone when you were much younger. Early access might have offset your identity and social isolation issues to the point of diagnosis and subsequent access to it.

Perhaps you are an XXY adult who found Testosterone unsettling, and your doctor didn’t understand why. Testosterone might have exposed you to Gender Dysphoria, and the support networks you had in place were inadequate in terms of understanding and support. Perhaps you could seek out newer networks, and things are better now, or maybe you didn’t, and life is not what you would like it to be.

Perhaps you are an XXY adult who had administered Testosterone and came to reject a male identity but do not see yourself as female. Maybe Gender Queer or Non-Binary might be more appropriate, or perhaps you are still searching.

Or perhaps you are simply curious about XXY or might know of someone who is, and you would like to support that person better. Maybe you might believe yourself to be XXY.

Whatever the reason that brought you here, we hope the experience will be enlightening, and you will realise the broad spectrum of life XXY entails. How every person is worthy of their existence, and all we can and should do is live that life to the best of our abilities wherever it should lead us.

The XXY Project is kindly supported by My XXY – ChromoDiversity Foundation, an effective and trusted charitable foundation supporting neurodiversity, improving lives and creating opportunities for those with differences related to X & Y chromosome variations.


Thinking About Your Child’s Sex Development: Support Information for Parents

Melissa Gardner, Emilia Floody, & David E. Sandberg
March 2022

We have created an information resource guide for parents and family members to explore. This guide provides basic information about conditions that affect how your baby’s body looks or works and continues with more specifics about their condition and its management. Some specific topics include how you can share information with other people (including family, friends, and your child as he or she grows up) and whether you and your medical team may consider further testing (including genetic tests). Depending on your child’s specific condition and the healthcare team who takes care of your child, parents can be asked to help make treatment decisions. When that happens, we want you to know you are not alone. Your child’s medical team is there to help, and we are here to help by giving you information and helping you think carefully through different options. There are different sets of questions throughout this guide to help you.

Your child was born with a body that looks and works differently from other babies. This is because their sex development has been affected by one of many conditions known as Differences of Sex Development (DSD). There are a lot of different words people use to describe these conditions. Some people will say “Disorder” of Sex Development. Others may say “Variation in Sex Characteristics (VSC)” or “Intersex.” Words like these are “umbrella terms” that can mean many different conditions. You may choose to use one term or another based on what you hear your child’s doctors use, or based on which you feel most comfortable with. Once you know the name of your child’s specific condition, you and your doctor will probably prefer to use that instead.

Babies can follow different sex development paths in the womb. Some paths are taken more often than others. All sex development paths lead to a combination of sex characteristics. These sex characteristics include, for example, sex chromosomes (X and Y) and how the genitals look. When sex development takes a less common path, a person can have a different combination of sex characteristics.


Variations of development


Sex development is a complex process and many combinations or variations are possible. Each of these variations can change the way your baby’s body looks or works. To clarify, sex development refers to the biological or physical sex characteristics of a person. These include the sex chromosomes, hormones, gonads (ovaries or testes), and genitals. These do not include gender or sexual orientation.

Why did my child take a different path?
There are many reasons why babies take different pathways in development. Sometimes, they involve genes. Genes are pieces of information in every cell of the body that serve as the instruction manual for how bodies develop. Changes in genes may sometimes cause unexpected combinations of sex characteristics to develop. They can also affect the way babies produce or respond to hormones. Sometimes, changes in genes are inherited from the biological parents. Other times, they occur randomly.

How common are these different paths?
Some paths are relatively rare. Others are quite common. Although the changes these paths cause in a body are already present before birth, they can go unnoticed for months or years. Not all of these changes lead to visible differences in how a body looks.

Are these paths life-threatening?
Most changes in a baby’s sex development do not affect general health, but some do. Children with one type of change may require different care than those who are affected by another type. That is why it is important to understand which condition (or “diagnosis”) your child has.

Why are there so many different names for these conditions?
Terms like DSD or Intersex are general terms covering lots of different conditions. Some of these conditions have very different effects on health, and doctors use different words to describe this. Some doctors use the word “disorders” instead of “differences” of sex development. This is because differences that cause a change in the way a body works are often referred to as disorders.

Some people don’t like the term “disorders” because it sounds like something is “wrong” with their child. Because of this, many people prefer the term Differences of Sex Development or use the name of their child’s specific condition instead.


Mental Health of a Large Group of Adults With Variations of Sex Development in Six European Countries.

Individuals with KS in our study seem to be the most vulnerable group. Not only were their autistic and attention difficulties high compared to the other variations but also their levels of depression and anxiety. Their self-reported anxiety, depression, ADHD and autism symptom levels were also higher when compared to the French reference population or population prevalence rates. Another paper on the general health status in the same dsd-LIFE cohort already showed that the participants with KS reported the highest percentages of physical problems, psychiatric health problems (45%), and a lifetime psychiatric diagnosis (59%). Clearly, the stresses and strains of this most prevalent chromosomal aberration are extremely high.

Since the dsd-LIFE project aimed at improving the quality of life and care for people with VSD, we tried to identify possible factors associated with mental health. Shame and stigma around XY-VSD and XX-VSD conditions have been found by some to negatively influence wellbeing. In line with these studies, we found much discomfort and a reluctance to talk about the diagnosis to other people (55-70%). This shows that a VSD diagnosis that may influence appearance, gender role, fertility, and sexuality is often perceived as a taboo that is better kept to oneself.

Particularly in persons with the chromosomal VSD conditions TS and KS, shame was significantly associated with depressive symptoms, showing the relevance of addressing shame in clinical care. Clinicians in multidisciplinary VSD teams should, therefore, give medical advice and support the care seekers to find a satisfying coping style with the condition. Through open and proactive communication, affected individuals may gain a sense of control and become empowered about their conditions. For that reason, it is important that mental health providers are part of the VSD team. Another form of support can be through peer counselling, which connects care seekers with persons with similar conditions and their families. Finally, educational level was correlated with autistic symptoms in participants with TS, KS and CAH. Indeed, individuals with TS and KS can have specific learning difficulties that deserve special attention to promote their psychological well-being.

Disclaimer

This site is for educational purposes and is not meant to serve as medical advice. We would caution anyone against using this website, or any other, in place of seeking medical or mental health care. The information should not be considered complete or exhaustive. It should not be used in place of a visit or consultation with a Medical Practitioner or other healthcare provider. Do not use the information to diagnose or treat any medical condition. We encourage you to take the information presented here and discuss it with your treatment providers. If you are unsatisfied with their responses, we encourage you to seek out alternative opinions until you find the answers you need.