Accepting a medical diagnosis can be difficult — especially when it comes to your child. However, explaining the condition to your child or children around them can also be difficult. I spoke to Jami Dumler — a licensed clinical social worker with Thriveworks, who specializes in family conflict and relationship stressors, pediatric and adolescent trauma, various mood and anxiety disorders and life transitions — about how to open the conversation with your child.
Here’s what she said.
How does a parent or adult prepare to explain a diagnosis to their child?
Before explaining a diagnosis to your child, caregivers should make sure they have a full, accurate understanding of the diagnosis itself and how it manifests for their child since everyone experiences their diagnosis differently and on a spectrum. If working with a professional in receiving this diagnosis, caregivers should make sure they ask all of their own questions to the provider prior to stepping into a conversation with their child so that they can feel more confident in their own understanding.
Secondly, it is important for caregivers to have an accurate depiction of their child’s current developmental age, emotional maturity, and their child’s baseline knowledge in order to present accurate, appropriate information around their diagnosis.
Finally, caregivers may benefit from taking time to conceptualize and practice how they may step into this conversation in order to feel confident, calm, and collected walking into the discussion. Caregivers could consider talking it through with a co-parent, trusted support person, or the professional working with their child.
At what age should you explain a diagnosis to your child? What are the signs that they are ready to know?
The specific age to start explaining to a child their diagnosis will depend on the type of diagnosis and the child’s developmental age. Children can start to understand more about emotions and behavior starting in preschool but with limited understanding. Signs that a child may be ready to know would include them asking questions about mental health, their own behavior, and others’ behavior in comparison to theirs.
Other signs that it may be time to discuss diagnosis are when children or teens begin sharing thoughts that something is wrong with them, such as expressing thoughts that they are “defective” or “different” as well as verbalizing unrealistic expectations of themselves. If your child is sharing misinformation they are getting elsewhere or using symptoms of their diagnosis as a barrier for working to establish growth, change, or responsibility taking then it may also be time to step into this conversation.
Can you give me examples of how you would explain a certain diagnosis to a child? For example, how would you explain to a child on the spectrum that they have autism? What about ADHD? What about a deadly illness?
Explanations would depend heavily on age and presentation. It’s important to keep the information age appropriate in content and language, clear and direct, and involve the child’s own presentation in the conversation and explanation. For example, I may explain autism to a school-age child who struggles with sensory overload by saying “It actually makes a lot of sense that you’re sharing that you have a hard time in math when your classmates get really loud and talkative. When the other kids start talking loudly, it makes it hard for your brain to stay calm and focus on what’s important like the teacher talking. This is because you were born with something called Autism Spectrum Disorder, which leads to your brain working a little differently than some of your classmate’s brains in that situation.”
An example of how to explain ADHD to a child may sound like, “We found out some pretty cool things about your brain! You have something called ADHD. That means your brain sometimes works like a super fast race car! But sometimes it also has a hard time slowing down then. Like when you have a hard time paying attention or focusing, your brain is just zipping all over the place with lots of new ideas. So just like a great race car, we just need to add the right oil, tools, and wheels to help it run its best and to be able to put on the brakes when needed.”
Sharing information about a deadly illness with a child will also need consideration for age and developmental level especially. Keep in mind that preschool-aged children are not able to fully understand the concept of death, especially the permanence of death. School-aged children have a better understanding of the permanence of death but it is still a newer concept. If your child is a teenager, they usually have a more adult understanding of death but struggle with this information due to developmentally being in an “indestructible” type of feeling stage. It is best to look for signs your child is ready to talk about this terminal diagnosis such as them asking questions about the next steps in their treatment, why treatment has stopped, or what will happen in the future.
A specific example, perhaps in response to a terminally ill teen asking a parent’s thoughts about what happens after someone dies for a family that believes in heaven, may sound like, “That’s a great question! When someone dies they go to heaven where they get to see their other loved ones who died and all their pain goes away.” Then feel out your teen’s response based on their words as well as their body language. If they’re open to continuing the discussion, it may be helpful to ask them what made them think to ask you that.
We know siblings are also affected when their brother or sister is diagnosed. How would you explain it to the siblings?
Explaining a diagnosis to a sibling would involve the same main components as explaining to the child with the diagnosis. Caregivers want to keep explanations developmentally appropriate, clear and approach the discussion at the sibling’s pace. It is important for caregivers to allow the sibling to ask questions, have a safe space to express their feelings, thoughts, or worries, and help clarify misinformation or wrong assumptions the sibling may have. It is also important to help the sibling understand a diagnosis using the symptoms or behaviors they see in their sibling and by relating it to something in their own world.
What are some red flags parents should look out for during the discussion?
Parents should stay aware of misinformation and help clarify and educate in a supportive, loving way. Parents will also benefit in these sometimes difficult discussions by paying attention to the child’s body language to gauge understanding, tolerance, and reactions to the information in order to shift their approach or take a break as needed. If children are verbalizing a lot of misinformation, I would encourage parents to ask their child with curiosity in their voice (rather than anger, anxiety, or fear) where they are getting this information from. If children are getting this information from the internet or a non-reputable source, I encourage parents to validate their curiosity and complement their resourcefulness while setting a boundary that children will benefit from coming to their parents to talk about any questions they have along the way. As parents approach these discussions calmly and with loving support, they are setting up that safe space their children will be more likely to turn to with their questions now that they know it is ok to talk about and that their parents will be honest with them.
Is there anything else parents should know about explaining a diagnosis to a child?
Parents should strongly consider age, diagnosis, and their reason or desire for sharing with their children. Keeping a diagnosis secret from a child or giving them false information can often lead to strong emotions if they find out from others or later in life. Children’s brains are also developmentally egocentric meaning they can only see the world from their perspective and the information they already have in their world. This means that if children don’t have information, they will often make up an answer that will be misinformed and often ends up more extreme or more anxiety-producing than the truth. That is why telling children their diagnosis can be very important. However, I would encourage caregivers to focus on the behaviors, strengths, and ways that a child can seek help, improve and live their best life. If parents focus on the medical side, send messages that a child is their diagnosis, or send messages lacking hope, children can often take on a victim mindset such as “well why bother trying, it’s my ADHD, I just shouldn’t have to do this.” This is where we see learning about their diagnosis turn into a negative or disadvantage.
When should parents seek professional help?
Parents should seek professional help if they lack understanding of the diagnosis themselves, or have strong anxiety or intense fear about approaching these conversations with their child. Parents may also want to seek professional help if they have their own trauma or struggles that may be triggered in such moments, especially if this could lead to impacting how they handle the discussion with their child. Many professionals that work with children are willing to coach parents through these conversations, have the conversation with the child first to help the parent bridge the gap, or can provide family sessions where they can be there to help facilitate this conversation between caregiver and child.
Finally, Dumler said the best thing parents can do for their children is to “create a safe, open, calm space for your child to talk to you about anything. If you are doing this, you are already one great step into the journey.”
San Diego Moms is published every Saturday. Have a story idea? Email [email protected] and follow her on Instagram at @hoawritessd.