Kinderhanden houden gefiguurzaagde triplex afbeelding van een vader en met een moeder met links en rechts een kind. De vier figuurtjes houden elkaars hand vast.

Image: iStockPhoto Vera Sikha


If you are a parent or caregiver of an intersex child, you will find information here that is important to you and your child. If you just found out that your child is intersex, you’re bound to have questions about what you’ve heard from health professionals. And as your intersex kid is growing up, you may be looking for information that will help you better understand and support them.

Intersex? DSD?

The broad and diverse spectrum that is biological sex includes many natural variations of sex characteristics. For the medical aspects, the umbrella term DSD is often used, while for the social aspects the word intersex is used. But often the names of diagnoses are also used, for example, adrenogenital syndrome, Turner’s syndrome, Klinefelter’s syndrome, and so on 1Other terms that health professionals sometimes use for instance are 46,XY DSD, 46,XX DSD, ovotesticular DSD, 46,XX adrenal cortex hyperplasia, 21-hydroxylase deficiency, Prader scale, mosaic chromosome pattern, hypospadia, Mayer-Rokitansky-Küster-Hauser syndrome, Swyer’s syndrome, ovotestis, androgen insensitivity syndrome, Quigley scale, gonadal dysgenesis, 17β-hydroxysteroid dehydrogenase 3, 5α-reductase deficiency, and cryptorchidism. This is only a small fraction of the words used for/by the approximately 40 diagnoses that fall under the DSD umbrella term.

There are a few points that are important to remember:

  1. Intersex and DSD are collective names and do not have the same meaning (even though they mostly involve the same group of people).
  2. People with different diagnoses can have completely different medical and social experiences; socially for example, an intersex person could come out and only receive support, while another may become the victim of (more) bullying. Medically, for instance, a woman with complete androgen insensitivity syndrome can use testosterone without masculinizing, while a woman with Swyer’s Syndrome would masculinize. This may be positive or negative depending on their personal desires.
  3. It is important to get the right diagnosis, because some diagnoses can be associated with serious health risks. Remarkably, those health risks usually have nothing to do with the sex characteristics from which both DSD and intersex derive their names.

If your child has just been born

Here you will find information for parents who have just heard that their newborn child is intersex and want to learn more about it.

If you have just heard that your child is intersex or has a specific diagnosis that relates to intersex, you may be concerned or shocked and have a myriad of questions. Maybe it is new to you too, that sex is much more diverse than what most people mean by male and female. You wouldn’t be the only one – we’ll talk about that later.

If you are just finding out and have never heard of sex diversity, intersex or DSD before this, many of your questions will be answered in the publication Support your intersex child, a guide for parents which was developed by OII Europe, IGLYO, EPA, and NNID based on the experiences of adult intersex people.

If your child is older

Some children are not told they have a form of sex diversity until puberty, but the information below may also be of interest to parents who have known since birth that their child is intersex. 

If you remain silent about intersex you will not be discriminated against. But being silent won’t make you happy either – rather the opposite. Many scientists have already published about this. What to do then is described in the Declaration of Malta. In it, thirty international intersex organizations tell what problems they see for the acceptance of the diverse spectrum that is biological sex in society. An important message in the Malta Declaration is that, as a parent, you cannot decide for your child what to do. This is especially true when it comes to decisions that cannot be reversed. Ethicists, but also the United Nations, the Council of Europe, and the European Parliament believe that such decisions should be postponed until your child can decide for himself. You are best equipped to support your child by knowing exactly what intersex is, and that biological sex is a diverse spectrum, rather than the binary male or female.

For yourself, it may help to know that sex is not determined by chromosomes. You will then understand that biology textbooks need to be changed: XY chromosomes is usually a boy, XX chromosomes is usually a girl, but it is definitely not a given.

Learning to cope with sex diversity fortunately does not have to be done alone. There are intersex organizations worldwide and patient groups where you can meet parents in a similar situation. And if you are looking for medical or psychosocial support you can go to the national DSD centers or to other care providers.

Becoming active yourself in an organization that advocates for your child’s rights may be the best way to help your child.

Separator: start positie

Read more…

Want to read more? Check out the articles below! They might be interesting for you as parent(s) of an intersex child.

This is a ‘collection page’ where information for a specific topic or audience is brought together. There may be other collection pages that may also be of interest to you. Currently, separate pages are available for the following target groups: