Are you wondering when and how to talk to your daughter about her Fragile X syndrome (FXS) diagnosis? If so, you are not alone. Many families struggle with deciding when the “right” time is and what to say. Here are some strategies to help in talking about your daughter’s FXS diagnosis with her.

What does it mean to have Fragile X?

Every family has something which makes them unique. In your family, that is having a daughter (and maybe other family members) with FXS. Fragile X is something people are born with, and there is nothing they or their family did to cause it. Having FXS means that your daughter may face additional challenges during school, in areas such as reading and math, and may feel uncomfortable in social settings. But this does not mean that she cannot achieve what she sets her mind to: she just may need extra help and support. Additionally, FXS is not something that she will “grow out” of but it does make up a part of who she is. Kids with Fragile X are still kids. They like to run around, play, and laugh. Having Fragile X does not affect the ability to have a long, happy, and healthy life full of possibilities. Every person faces different challenges in their lives. While Fragile X may make life a little more challenging, it also makes life much more special.

When is the right time?

There is no “right” or “wrong” time to talk with your daughter about her diagnosis. Consider starting the conversation earlier rather than later so she may continually learn more about Fragile X as she gets older, rather than try to absorb a lot of new information all at once. As a parent, you may feel an instinct to protect your child from harm, stigma, and stress by delaying talking about her diagnosis. However, research shows that children wish to discuss this information as soon as possible. This reduces anxiety and increases trust in their caregivers. Children would also rather hear this information from someone they know and trust.

Children are more observant than you think. Often as children get older, they begin to compare themselves to their peers. The time may be right when your daughter starts to question why it takes her longer to learn topics in school compared to her classmates or if she questions why she sees the doctor so often. She may bring up the conversation before you are ready or had time to fully prepare. Consider thinking about this conversation before you even plan to open the dialogue, just in case. It is okay to be nervous about how your daughter will react. Learning about her diagnosis may allow her to understand why she struggles with certain things and why she may need extra help and support in school.

An ongoing conversation

Knowing exactly what to say is difficult, so ask yourself: what does my child need to know now and how much can my child handle? Consider starting a natural conversation in a relaxed, open, and familiar environment such as the dinner table or on a walk. Scheduling a specific time or event with your child to talk to them could increase their anxiety. Allow your child to direct you in how much information they wish to know. This is not a one-sided lecture, encourage them to ask questions and allow ample time for discussion.

This is not a discussion that should happen in a single sitting. Over time, peel back the layers of FXS by incorporating bits and pieces of information into everyday discussion.  A young child cannot understand all of the information about their diagnosis at once, so deciding what they need to know at each stage of their life is crucial.

The initial conversation should focus on what Fragile X is and how FXS may impact her life. Keep your conversation simple and matter of fact. Children are curious and your daughter will ask you if she wants to know more. Try not to focus on the “negatives” of Fragile X. It is important for your daughter to know why she may struggle with reading, math, or when talking to strangers, but let her know that her family, teachers, and doctors are there to support her in succeeding and reaching her goals. It is also important to emphasize that everyone has strengths and weaknesses regardless of FXS. While certain aspects of school may be challenging, make a point to emphasize what she excels at.

Over time and at the appropriate developmental or life stages, gradually add more to the conversation and let her know what her life may look like going forward. Let her know that she is supported, and that you will work hard with your daughter so that she can gain the skills she will need throughout her life. It is important to be open and honest. Also, allow for open conversations and invite her to ask questions. If you are not sure of the answer, take the time to sit down together to learn the answer. This can be a great bonding experience and demonstrates that you are willing to learn alongside her.

Your daughter is not alone. There are other girls out there with FXS. Consider going to a conference or other event so your daughter can meet other girls with FXS. Remember, you are not alone either. Other families have been in the same position as you. Seek out advice from parent and family support groups or forums to gain perspectives on how this conversation went with their own daughters. Ask for suggestions and explore what challenges they faced.

Key take-away points:

  • This conversation does not have to be one-time; it is an ongoing discussion targeted towards the appropriate developmental stage of your daughter. Studies have shown that children prefer to learn about their condition gradually throughout childhood and adolescence.
  • Allow for open and honest communication and encourage questions.
  • Remind your daughter that she is unique, supported, and loved.
  • The way that each girl experiences Fragile X is different. Ultimately, you are the expert on your daughter and know the right amount of information to provide at a given time.
Jasmine Shen

Lauren Walker, BS
Lauren Walker is a student in Thomas Jefferson University’s Human Genetics & Genetic Counseling Program Class of 2022. Following graduation, she plans to enter the field of genetic counseling and work within clinical pediatric genetics.