Living with androgen insensitivity syndrome
Children with androgen insensitivity syndrome (AIS) and their parents will be supported by a team of specialists who can offer ongoing information and care.
Various treatment options are available to someone with AIS, including reconstructive surgery and hormone therapy.
However, psychological support and advice to help you deal with any issues that arise as a result of your child's condition is probably the most important aspect of care.
With appropriate care and support, most people with AIS are able to come to terms with their condition and lead normal lives.
Choosing your child's gender
As a parent of a child with AIS, one of the biggest decisions you'll have to make will be to choose which gender to raise your child as. You'll be given lots of information to help you make this decision.
Most parents of children with complete androgen insensitivity syndrome (CAIS) choose to raise their child as a girl, as they have female genitals and often ultimately end up identifying with being female.
The decision is more difficult if your child has partial androgen insensitivity syndrome (PAIS), as their genitals may have both male and female aspects. You're entitled to specialist advice about your child's future development and any gender identity issues that could arise later on.
Most children with PAIS stay with the gender they've been raised as. However, some people feel this doesn't represent who they are and decide to switch gender in later life.
Talking to your child about AIS
Parents often wonder when and what they should say to their child about their condition.
Many people feel it's best to explain the basic facts about AIS to the child as soon as possible. They can then be given more detailed information as they get older, as their ability to understand increases.
It's usually recommended that a child fully understands their condition before they reach puberty. This can be a stressful time anyway, but it could be very traumatic if your child starts puberty without knowing about the possible changes they may experience, or the differences between them and their friends.
The situation can be more difficult if a girl with CAIS isn't diagnosed until she has started puberty. The health professionals looking after your child can advise you on how to talk to your child and support you through this process.
Support for parents
If your child is diagnosed with AIS, you should be offered counselling to help you come to terms with your emotions.
A diagnosis of AIS can come as a shock to parents, and feelings of shame, guilt, anger and anxiety are common.
Talking to other parents who have a child with AIS may also help. There are organisations that can put you in touch with other families affected by the condition.
You can find contact details for the AIS Support Group (AISSG) on their website, or call the Contact a Family helpline on 0808 808 3555.
Support for children
Some young children with AIS don't need psychological support because their condition is completely natural to them.
However, as a child gets older, they may need support from a therapist with experience in AIS to help them understand and cope with their condition.
A long-term relationship between the child and therapist is ideal so any new issues can be discussed as the child matures.
Children with CAIS and PAIS will sometimes need surgery to help change their body and genitals to be more consistent with the gender they're raised as.
Some procedures may be best carried out while your child is still young, but others can be delayed until they're older.
Children with AIS sometimes develop a hernia (where an internal part of the body pushes through a weakness in the surrounding tissue) soon after birth. This is a result of their testicles failing to move from the tummy to the scrotum.
This can be repaired by closing and strengthening the gap created in the surrounding tissues. The testicles may also be removed during another operation.
Removing the testicles
Girls with CAIS will usually have their internal testicles removed, as there's a very small risk they could become cancerous if left in place.
This procedure is often delayed until after puberty because the testicles produce hormones that help girls with CAIS develop a normal female body shape without hormone treatment, and the risk of the testicles becoming cancerous before adulthood is extremely low.
If you decide you'd prefer for your child's testicles to be removed before puberty, hormone treatment will be needed to help them develop a more female body shape.
Moving the testicles and reconstructing the penis
Boys with PAIS may be born with fully or partially undescended testicles. If this happens, an operation can be carried out to move the testicles into the scrotum.
Read more about treating undescended testicles.
Surgery can also be carried out to straighten the penis and correct hypospadias, where the hole that carries urine out of the body is on the underside of the penis, rather than at the end.
Girls with AIS often have a shorter vagina than normal, which can make having sex difficult. Treatment for this is usually delayed until after puberty, so she can decide if she wants treatment for it and choose what treatment she prefers.
In many cases, surgery isn't necessary because the vagina can be lengthened using a method called dilation. This involves inserting small plastic rods that gradually widen and deepen the vagina.
Alternatively, a procedure to remove skin and tissue from the genital area and use it to reconstruct the vagina can be carried out.
Women with PAIS can also have surgery to reduce the size of their clitoris. This may make it less sensitive, but achieving an orgasm should still be possible.
Male breast reduction
Boys with PAIS will sometimes experience some breast development around puberty. If this occurs, an operation can be carried out to remove the breast tissue.
Read more about male breast reductions.
If the testicles are removed when a girl with CAIS is a child, treatment with the hormone oestrogen (the female sex hormone) is usually started at the age of 10 or 11, so female development begins at an age consistent with puberty.
This won't cause periods to start, as people with CAIS don't have a womb, but it will help them develop a more female body shape. It will also be continued after puberty to stop them developing menopausal symptoms and weak bones (osteoporosis).
Women with CAIS who had their testicles removed after puberty will also need to take oestrogen to prevent the menopause and osteoporosis.
Children with PAIS may also need to take hormone supplements. Girls with PAIS who have their testicles removed may need oestrogen to encourage puberty.
Boys with PAIS may need androgens (male sex hormones) to encourage certain male characteristics, such as the growth of facial hair, penis growth, or deepening of the voice.
Page last reviewed: 14/01/2016
Next review due: 14/01/2018