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How and When to Tell Your Child
Many parents and caregivers wonder how and when to tell their child about a diagnosis. Even when there are no obvious outward signs of genetic difference, having information from an early age can help your child accept themselves.
Your child should hear the diagnosis from you or from a support professional with you there to allow them to ask questions. Secrecy or reluctance to talk about it may make your child feel shameful, leading them to seek information from unreliable or unsafe sources or to learn about the diagnosis incidentally and feel betrayed.
While sooner may be better than later, it’s important to remember that there might not be a perfect time to introduce the diagnosis, and that many conversations may take place as your child grows up.
“You’re enough… just as you are.”
Starting the Conversation
Keep the discussion light and simple; most children need minimal information at the start.
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Genes can be explained as "instructions" or "messages" that guide the body, similar to "pages in an instruction book." Chromosomes can be described as "books in a library" that hold these instructions. Differences can be likened to "different instructions," "extra pages," or "an extra book on the shelf."
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Emphasize that while “instructions” are important, they are only part of who you are. For example, eye color is determined by your genes, but the language you speak is not.
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You do not need to talk about everything at once. The topics you discuss and the words that you use will depend on your child's age and experiences.
1. Keep it Simple
General Tips on Talking to Your Child¹
It’s important to emphasize that a genetic difference is something that “just happens”, and no one caused your child to have it.
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Avoid using the words “mistake” or “accident”. If the word “mutation” comes up, explain that it’s simply a scientific term for natural variations in genes and doesn’t mean anything is wrong—everyone has unique variations in their DNA.
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Identify and promote your child’s strengths, as this helps boost their confidence and sense of self-worth. Acknowledge positive aspects of the diagnosis, such as how being well-informed means they are better prepared to face any challenges ahead.
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Don’t hesitate to reassure your child that “whatever the challenges, we’ll get through them together”.
2. Use Positive Language
Be honest about potential challenges.
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Inform your child that there are many other children who share the same kind of genetic difference as them.
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Explain that many children, with or without a genetic diagnosis, may encounter physical, social, emotional, or learning difficulties at different stages of life.
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Be comfortable answering “I don’t know, but we can find out together”.
3. Be Honest
Relate your child’s differences to other people’s differences and challenges, with examples relevant to your child and your family.
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For instance, hormonal therapy may be likened to a friend who requires insulin for diabetes, using an inhaler for asthma could be compared to taking medication to support health.
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Use pictures or visual aids when talking about complex topics.
4. Make it Relatable
Your child may have varied reactions to the information, and feelings can change over time. They may appear disinterested one day and distressed the next, feel sad, angry, confused, or even find it ‘cool’.
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Your child may want to know who else is aware of the diagnosis, when it was made, why this has happened to them, what it means for the future.
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They might act out or have a delayed reaction, feel anxious about potential treatments, or find relief in understanding why they struggle socially or in school.
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Let your child know that it’s always okay to ask about anything they see, hear, or wonder about.
5. Give it Time
Discuss with your child who is appropriate to tell and who might not need to know.
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Emphasize that sharing the diagnosis is a personal decision to be made by them and their parents.
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Explain that most people will not immediately understand what it means to have a genetic difference and that some may have unexpected reactions.
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In many countries, physicians are restricted from disclosing a diagnosis to schools or employers. A letter mentioning the existence of an underlying condition and the resulting need for accommodations may be enough.
6. Respect Privacy
There may not be a ‘perfect moment’ to introduce a diagnosis for the first time, but starting early and addressing questions naturally can ease the process.
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Even if your child is young, it can be helpful to discuss it a little at a time, considering their age and any symptoms they might be experiencing.
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Rather than making it a formal event, try to find a casual time for the disclosure conversation or take advantage of a moment of opportunity to bring it up.
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Every child is different, and while sooner might be better, there is no “right age” to start.
7. Start Early
Consider seeking help for talking with your child from their physician and/or an association of parents with children who have the same genetic variation.
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Pay attention to your feelings while discussing the topic with your child.
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You may wish to consider working through your feelings with a therapist first.
8. Get Support
“You’re going to be ok. It’s going to be tough. But at the end of this, you’re going to come out a much stronger and wiser person.”
While sooner is usually better than later, there might not be a perfect time to introduce the diagnosis. If your child has something they have to do, such as a therapy or treatment, it is often helpful to first tell them why it needs to be done. This can be a good time to start the conversation.
Tips for Conversations at Different Ages¹
Explain that your child’s body and brain are made a little differently than other children. This means they might have certain strengths that are greater than for other children, for instance kindness, love of learning, thinking up and making things, or not giving up. This also means they might need more help in certain areas or that some things might be harder than for other children.
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For instance, learning how to ride a bike, write, read, connect with peers, or handle difficult situations.
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They may need therapies or treatments for physical challenges that not all children face, such as daily injections or mobility accommodations.
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Tell your child you love them just as they are and promote their strengths.
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All living beings are made differently: the reason male Calico cats have a beautiful pattern of orange, white and black fur is because of an extra X chromosome.
5 Years and Under
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Tell your child they are enough just as they are, and remind them of their unique strengths, talents, and qualities that make them special and valued, both within your family and in the world around them.
Begin talking about DNA and cells providing more details as your child learns about these topics in school. For example, DNA helps tell cells how to grow over time, and people have different DNA with different effects.
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Remind them that some information learned at school may be outdated and to talk to you if your child has any questions.
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Introduce the most common potential future challenges, and accommodations. For instance, if fertility might be an issue, begin explaining that not all parents have children with their own DNA; some seek medical help and/or use donor DNA, while others choose to adopt.
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If your child needs any new types of support, treatments or accommodations, explain why.
6 to 12 Years
Talk about your child’s feelings and about sharing their diagnosis with friends and/or romantic partners. Provide more information about genes and chromosomes according to what is being learned at school.
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Discuss ways for your child to become proactive and involved in their health care. Encourage them to ask questions during doctor visits and to express their needs without hesitation.
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Let them know that information on social media or the internet regarding the genetic difference may not always be accurate, and often focuses on ‘worst case scenarios' instead of acceptance and strengths.
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Remind your child that everyone is different, and they are enough just as they are. Different people have different needs: some have two eyes of different color because of their DNA. This can be beautiful, but also means they may need more frequent check ups with the eye doctor.
12 Years and Over
Takeaway
Talking about the diagnosis is not a one-time event. It is a process that will happen over time, and your child’s feelings may change. Every child has unique needs, levels of understanding, and ways of coping. You, as a parent, know your child best.
Consider sharing this resource with your child's healthcare professional or school if you feel it could be helpful.
Further Reading
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eXtraordinarY Kids Clinic, Children's Hospital Colorado. (2013). Talking with your child about his diagnosis of XXY (Klinefelter) syndrome. Retrieved from https://genetic.org/wp-content/uploads/2016/08/XXY_handout-v4_Jan-2014.pdf
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Dennis, A., Howell, S., Cordeiro, L., & Tartaglia, N. (2015). "How should I tell my child?" Disclosing the diagnosis of sex chromosome aneuploidies. Journal of genetic counseling, 24(1), 88–103. https://doi.org/10.1007/s10897-014-9741-4
© 2025 My XXY | Chromodiversity™ Foundation. All Rights Reserved. Please note this content is not medical advice and is for informational purposes only. For further resources, visit chromodiversity.org.