Should I Tell My Child About Their Diagnosis?
A very common question I get during a feedback meeting with a family is, “should I tell my child about their diagnosis?” Now, I’ll give you a very psychologist-y answer: “it depends.” And it really does. Some factors to consider:
- What are your family’s thoughts and beliefs around medical diagnoses?
- How old is your child and how much do they understand?
- Do you agree with and understand the diagnosis?
Here’s a more direct answer – most of the time, yes! Humans are meaning makers and storytellers, even children. We are naturally constructing narratives around why things are happening to us or why things are harder for us. When we as parents, therapists, or teachers don’t help shape the narrative around why a child might be struggling, we can sometimes inadvertently reinforce unhelpful narratives.
Let’s take an example of a common narrative I hear. A child is not good at reading, so that child assumes that there is something wrong with them or that they are stupid because they are not good at reading. Fast forward a few years and the child hates school and reading, avoids schoolwork, and does not want to go to college because they feel like they are not good at school. They have also missed out on numerous learning opportunities throughout the course of their education.
Here is where a diagnosis, and knowledge of the diagnosis, can be so helpful! If that child has Dyslexia, we can help them understand their difficulty with reading within the context of a brain-based difference that makes language tasks like reading and writing more difficult (which is what Dyslexia is). There’s nothing wrong with them, and it certainly does not have anything to do with their intelligence. If we are instead quiet while our children struggle, we send a different message – that their struggles are too hard/painful/shameful to talk about, or in the worst case scenario, we can inadvertently reinforce the message that their struggles make them less worthy of a person.
When we can name things for our kids and help them put words to why they are struggling, we can empower them to advocate for themselves and use tools that would be helpful for them. When we stay silent, even if it’s from our own lack of knowledge and confidence about a topic, our children notice that, and often create their own unhelpful narrative.
But what about diagnoses of ADHD or Autism? Yep, I still think it can be helpful. When teenagers and young adults are given their diagnosis of Autism for instance, it can be one of the most validating, relieving, and powerful moments of their lives.
Telling your child about their diagnosis can be immensely validating and helpful for them. To do this well, there is work that you, as the adult, needs to put in on the front end.
- You need to feel knowledgeable about the diagnosis and how to talk about it with your child. Look up some of the resources your provider gave you, ask questions to your provider, read some books, or talk to friends whose children have the same diagnoses. Watch your sources – the internet can be very helpful in gathering information, but you should stick to reputable, research-based sources.
- Make the information understandable, with kid friendly and developmentally appropriate language. Again, our goal is to put language to our children’s struggles and help shape the narrative around why this is happening. It’s also equally important that we let our children know that they are capable, even if they learn, think, or behave differently.
- Keep the conversation going! This isn’t just one and done. Keep talking about what this diagnosis means for them, how they think and feel about themselves, and how they notice this diagnosis in everyday life. Encourage their curiosity about it. If we just tell them one time and move on, we again risk sending a message that this information is too hard or painful to continue discussing.
Ready to share with your child? If so, read on.
How Do I Tell My Child About Their Diagnosis?
The second most common question I get in a feedback meeting is, “how do I tell my child about their diagnosis?”
Start by going back to what you told them about the testing in the first place. The goal of the evaluation was to figure out what kinds of things their brain is really good at and what kinds of things might be harder for their brain. So a quick and easy debrief could be as simple as sharing with them what you found to be their strengths and areas of difficulty. It could look something like:
“Remember how we went to see Dr. Danielle to figure out if there was anything that we could be doing to help you learn better? Well, she helped us understand that you are really good at puzzles and patterns and at math. Reading quickly and answering questions about what you read is harder for you. We think that also might be why you’re feeling stressed about school and don’t want to go to school. So, we are going to work with the school to get you some more help in reading and we are going to try some things to make the school day better for you.”
If your family is okay using diagnostic labels, the feedback could go something like:
“Remember how we went to Dr. Danielle to figure out if there was anything we could be doing to help you learn better? Well, she helped us understand that you know what a lot of words mean, you love listening to things, and you have a really good memory for things that you hear. And, it is difficult for you to read some of the words on your own. This is called Dyslexia, and there are actually a lot of people in the world who have Dyslexia. People who have Dyslexia need to learn reading in a different way, so now we can help the school understand how to help you read better.”
So a basic template might be:
Remember how we went to see Dr. Danielle to figure out (reason for the evaluation)? Well, she helped us understand that you (strengths) and (difficulties). This is called (diagnosis), and it means that there are some things that we can do to help you (insert goal – learn, make friends, get organized) and to make school feel more fun for you. We also got some good ideas about how to help our family manage (schedules and homework, feelings, communication).
Let’s use this template to explore sharing about a diagnosis of Autism with your child.
“Remember how we went to see Dr. Danielle to figure out how to help you at school? Well, she helped us understand that you are extremely knowledgeable, enthusiastic, and passionate about areas that are interesting to you, which makes it harder for you to do schoolwork that you are not interested in. Your peers often want to talk about different things than you, and unexpected changes to your school day feel surprising and tricky. This is called Autism, and it means that there are some things that we can do to help you find peers who like what you like, talk with your teacher, and make class feel more fun and interesting. We also got some good ideas about how to help our family communicate and to make sure that you get to do the things that you really enjoy at home.”
This does not need to be very long in terms of what you share, but you do need to talk about this multiple times. Just telling them initially is an important first step and should serve as a framework as you start to identify and implement supports, and help your child understand why it is that you are doing what you are doing.
The narrative we want to build is that we now understand more about how their brain works, including things that they are good at and differences in thinking and learning. When we know what those differences in thinking and learning are, we can take steps to help their brain learn in the best way possible. Bonus points if you can add in something about how everyone in the family needs to change as a result of this diagnosis, not just the child.
For more information on how to talk with your child about Autism:
https://drlizangoff.com/2021/08/09/how-to-explain-autism-to-kids/
For more information on how to talk with your child about Dyslexia:
https://drlizangoff.com/2021/02/16/explaining-dyslexia/
For more information on how to talk with your child about ADHD:
https://www.understood.org/en/articles/our-community-weighs-in-explaining-adhd-to-your-child
https://www.understood.org/en/articles/how-to-explain-adhd
https://drlizangoff.com/2021/02/09/how-to-explain-adhd-to-kids/
Author
Dr. Danielle Mohr is a licensed psychologist at Wolff Child Psychology. She specializes in comprehensive evaluations for children, teens, and young adults, and she conducts regular individual and family sessions.