This article has been republished with permission from the National Fragile X Foundation.
When parents first learn about Fragile X, their primary focus is on the meaning of the diagnosis for their child with the syndrome. Once the dust settles though, they begin to think about the genetic implications for other family members, and in particular, for typically developing siblings who may or may not carry a Fragile X mutation.
It seems an unfair second blow to now realize that there could be long-term reproductive and health concerns for their other children who they thought were “off the hook”, developmentally speaking. Parents are sometimes tempted to avoid discussing Fragile X at home in an effort to spare their unaffected children from worry. They may respond to questions with vague answers, relying on general terms, such as “special needs,” to describe a brother’s or sister’s disability. Whispered conversations between parents and white lies about the cause of a brother’s or sister’s difficulties end up creating unnecessary misunderstandings and anxiety.
The discussion of how and when to tell unaffected siblings about Fragile X has many parallels to the worries parents feel about discussing “the birds and the bees” with their children. Fortunately, many of the same strategies for the “sex talk” apply equally to the “Fragile X talk.”
Make it an Ongoing Dialogue
From an early age, look for opportunities to incorporate information about Fragile X into everyday conversations with siblings. Relevant observations, both positive and negative (e.g., “Fragile X makes our family special,” “Sometimes it’s hard having Fragile X,” etc.), and even humor (“It’s gonna be one of those Fragile X days!”) set a tone of normalcy for future discussions.
Look for teachable moments to point out that every family has its own challenges, and your family just happens to have Fragile X. A discussion about the downsides of growing up with Fragile X should be balanced by pointing out the positives: the uniquely sweet and funny personalities of brothers and sisters with fragile X syndrome; the opportunity for siblings to develop an open and tolerant attitude toward people with differences; and the valuable lessons families learn about what’s really important in life.
Be Truthful and Accurate
Answer questions as simply and honestly as possible, using language appropriate to the situation and to a child’s age. For young children, Fragile X can be described as “a kind of medical problem that makes someone behave and learn differently from other kids.”
Older children should be exposed to the concept that Fragile X “gets passed down in families.” In some families, this may be obvious because several relatives are affected; the discussion should also include the idea that people can “carry” Fragile X without knowing it. Teenagers can learn terms such as premutation, full mutation, FXPOI, and FXTAS, and they should be encouraged to read understandable resources such as the NFXF’s website.
Hiding information in order to protect a curious teen is unrealistic, as information about Fragile X is readily available on the internet and social media. Open communication between parents and children from an early age can ensure that siblings have an accurate understanding of the meaning of Fragile X for them and for their family.
When a child or teen asks a question about Fragile X, parents should not feel the need to provide a comprehensive explanation about all the disorders or the complex genetics of Fragile X. Try to find out what is really being asked.
A young child who asks about Fragile X may have heard that it “runs in families” and might be worried that he or she will “catch” behavior problems from a sibling. A teenage girl might be convinced that she’s a carrier and worried about having children in the future. Asking direct questions, such as “What do you think the chance is that you carry Fragile X?” and “Can you tell me what you’ve heard about FXTAS?” help to focus the conversation. Provide a simple answer to the specific question, but leave the door open for more discussion on other topics.
Help Siblings Build a Buddy System
By the time they reach school age, siblings often worry about what their friends think of their brother or sister with fragile X syndrome. They may be embarrassed and avoid bringing friends home from school. They may not know how to explain their sibling’s condition to friends. When appropriate, a parent can provide child-friendly information about Fragile X to a school class or community group.
A parent can initiate a simple discussion about Fragile X with a sibling and his/her best friend; this can be an ice breaker that gets communication flowing. Above all, siblings need to know that there is nothing shameful about having Fragile X in a family. In fact, they are often relieved and surprised to find out that their friends are very sympathetic and may be dealing with family worries of their own.
Keep Things in Perspective
Knowledge about Fragile X-associated Disorders has expanded greatly over the past ten years, and in the next decades, still more advances will be made. The conversation with a 13-year-old girl today about future childbearing will likely include many different options by the time she’s actually ready to consider having children. Testing and treatments for Fragile X disorders will continue to evolve over time, and it’s important to emphasize this when talking about Fragile X and its future implications for siblings.
To Test or Not to Test
Organizations for genetics professionals, such as the National Society of Genetic Counselors, recommend against genetic testing for unaffected minors. When the point of testing is solely to find out whether or not an asymptomatic child is a carrier of a specific condition, testing should be deferred until the child is old enough to participate in making the decision whether or not to be tested. If a child has symptoms, such as learning disabilities or psychiatric problems, then testing should be considered as a diagnostic test, not a carrier test.
It is important to recognize that some people feel empowered by knowing their genetic test results, even if it means finding out they are carriers; other people feel burdened by such knowledge and prefer not to know. Either way, once the results are known, there is no way to “undo” the knowledge, so testing decisions should not be taken lightly. Even though a parent may be curious as to whether an unaffected sibling carries a Fragile X mutation, testing should be postponed until the sibling is old enough to independently make an informed decision. In some cases, it may be appropriate for mature teens to participate in decision-making about their own carrier testing. Every situation is different, and decisions about testing will depend on the maturity of the teenager, his/her ability to make an informed decision, and the perceived benefits of testing versus waiting.
Call in a Professional
Everyday conversations about Fragile X can and should be incorporated into the day-to-day routine of a family’s life. Some parents become very emotional at the thought of talking about carrier issues with their children, and this can make important discussions awkward for all involved. Sometimes, teens are more receptive to hearing the information from an unrelated, “neutral” person, such as a genetic counselor or other knowledgeable professional.
A core skill of genetic counselors is to explain complex genetic information in a way that is understandable to families. This is particularly important when a teen may be considering carrier testing and needs to understand and discuss key pros and cons in order to make an informed decision. To locate a genetic counselor in your area, go to Find a Genetic Counselor at www.nsgc.org. Parents should realize that they are not alone in these situations and can reach out to the NFXF and to professionals in the Fragile X community for help.
Remember that family discussions about the many aspects of Fragile X cannot be boiled down to a single talk. Every family’s Fragile X journey changes over time, and siblings’ questions and adaptation to Fragile X evolve too as they grow and develop. Families do best when there is open and honest communication about Fragile X, a recognition that all families have challenges, and a willingness to ask for help when needed from Fragile X professionals.