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Parent FAQs - AIS- DSD Support Group

FAQs

After reading over the site, you may still have many concerns. Here are some of the most frequently asked questions.

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Is my child a boy or a girl? Your child will tell you. So much depends on the diagnosis and how your child feels. It is important to remember that there are three areas that often get confused, phenotype (physical appearance), gender (how a child feels), and sexual orientation (who a child will be attracted to). They are not always related. Someone with complete androgen insensitivity might typically identify as a female, where someone with more androgen receptors might identify as a girl, a boy, or somewhere in between. The world’s gender spectrum is broad, full of tom boys, sporty girls, princesses, rough and tumble boys, sensitive boys, and many others. What is important is to do your best to make a decision for your baby, and be there to listen as they grow.

Will my child have a normal life? Normal is almost impossible to define, but if you mean as healthy, happy, and full of potential as children who do not have a DSD, then YES. Absolutely.

Why I have I never heard of DSD before? Because of social stigma surrounding sex and genitalia, disorders of sex development are not usually topics of discussion or education. As they are rare conditions, very little educational information is passed even to doctors who may have these patients in the future. One of our goals as a group is to educate others and change the way that education is being given to a more positive and open approach. Hopefully, someday, this will change. One of our goals as a group is to educate others and change the way that education is being given to a more positive and open approach. Check out the handbooks and brochures for your child’s doctor, and consider using our customizable letter to (which can be used anonymously) to educate your child’s school teachers for topics of science, health and reproduction.

Does my child need surgery? Depending on your child’s diagnosis, surgery may or may not be needed. It is important to remember “normalizing” cosmetic surgery can cause more harm than good, and non-life threatening surgeries can wait as well. Surgery is irreversible and can cause scar tissue that can make things more difficult in the long run. Waiting to get your child’s consent for any permanent changes to their own body can feel difficult for a parent who wants to protect a child who may have a genital difference, but it is often the right thing to do. While AIS-DSD Support Group does not provide medical advice, take time to research options and outcomes before making any decisions.

What should I tell my child about his or her condition? The answer to this question is simple. The truth. Be honest with your child, open, and loving. They are more resilient than you think.

What age is he or she ready to hear this information? This can vary depending on the child. Some children are more mature than others, but generally, the age they are ready to understand the reproductive system might be the best time to share. Start by giving small amounts of information at age appropriate levels to keep an open an honest approach. Children start asking about babies typically around ages two to three years of age. Take these opportunities to teach about adoption, how families are made, and how everyone is unique and special just the way they are.

Why is it important to give this news? It was once thought by well-meaning physicians, that secrecy was the best approach to the knowledge of DSD. It is now known that secrecy can be one of the most damaging issues surrounding a diagnosis. As many of the adults who have lived these experiences can expand upon, secrecy leads to shame, and shame is never good. Keeping an open and honest approach is the key to your child accepting themselves for the amazing and unique individual they are and will grow to be. Many of the adult members of our group share the importance of being truthful and open with our children in the Member Stories section on this website.

What questions can I anticipate my child asking? There just too many to count. Questions will vary on diagnosis and the individual child. By joining the email and/or Facebook group, you can have access to all the shared stories and questions of children growing up from around the world. There are medical professionals in this group as well, and often they can lead to you to resources that might benefit you as a parent and your child. Though we do not provide medical advice, we do provide support and educational resources to understanding your child’s diagnosis.

Will my child ever be happy and accept his or herself? Yes! Having a DSD is just another way to be human. We have many helpful resources to help you raise your children with understanding and acceptance. Though there is not one perfect way to raise your child, hopefully you will be able to gain some ideas and develop your own plan as you go.

Where can I go for support? Medical questions? Counseling? Contact us. Join the AIS-DSD Support Group, and you will be so glad you did!

 

 

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