- By this age you will need to show the utmost respect for the way your young person wants to be supported in relation to their health and wellbeing. What language do they want you to use for their variations of sex characteristics or condition / diagnosis? If they don’t want to talk about it all, you will probably still need to carefully negotiate some language for the things you’re not talking about – just so that you are ready for the time that they want to talk or need to talk. They might just listen to you, and not respond, but they will have heard it, and make up their own mind about what it means to them.
- There can be a lot to talk about at this age, not only about the changes in doctors (transition) but about the checks of adult development that might be suggested by their health team. Discuss who should go in the room for transition appointments and prompt them to ask questions eg about medical follow-up and possible tests (hormones, bones etc).
- All parents and young people need to work out how to talk about relationships and quality of life, but with a dsd there can be an extra angle such as learning how to discuss fertility, different body development or evident medical treatment. Sometimes a young person will have to let their friends know how to help them in an emergency (e.g. a girl with CAH).
- Sexual pleasure can be a difficult thing to discuss with a young person – it will have been made so much easier if you have established a strong grounding during the earlier age-stages. You need to be ready for questions, and perhaps to say – I’ll have a little look, if you’d like me to – or I could ask the doctor for an appointment.
- Feeling good in one’s skin or body confidence is something we all strive for and it is difficult for many people. This is an age when confidence can be knocked by one’s own thoughts and fears or by other people. You might have the chance to discuss this with your young person – or you might need to monologue around them and point out to them how other people have met these challenges. Remember that non-verbal phase in babyhood – your young adult child may have gone back to that and you will find yourself talking ‘into thin air’ again.
- Knowing about fertility options might be a focus for some doctors during appointments at this age. You can prepare your young person for this and point out that this is an aspect that doctors need to discuss now but it can be re-visited at different points in a person’s life.