To tell or not? And what to say? 6 things to say to young people about disorders and diagnoses
/You’ve just finished talking to your child’s doctor, paediatrician or psychologist and they have told you your child meets the criteria for a mental health, educational/learning or long term physical health diagnosis. What do you say to your child/young person?
10% of young people are diagnosed with a physical disability and up to 20% with a mental health diagnosis during their childhood and adolescence. Many more young people don’t have a formal diagnosis per se but have tough struggles in a particular area (learning, social, mental health, physical health).
It’s not surprising therefore that many parents have to grapple with these questions to “What should I say? And How should I say it?”.
Working out how to talk to children about their challenges and diagnoses can be tough. But doing this as well as we can is really important.
When we talk helpfully to children and young people about their challenges we can potentially support them to better understand their challenges, feel less blame and isolation, help them understand the need for treatment/appointments/home activities (when this applies) and also empower them to ask them for what they need when we are not with them.
Unfortunately, in contrast, when children hear unhelpful messages about their challenges it can lead to them feeling more distressed (in the short and longer term) about their diagnosis, feeling stigmatized (and sometimes leading them to talk to others about their diagnosis in a way with others which leads to further stigmatizing), feel uncared for, or developing a “I can’t do it” reaction to some situations in which they avoid helpful situations or behaviours because of their diagnosis or challenge – which then makes things worse for them.
So talking about this carefully does matter. How should we do this in a way which helps kids rather than hinders?
I should first say there are no hard and fast “rules”. What we say will depend a great deal on the age of the young person, what they already know, their situation and their own strengths and challenges.
Having said that, here are a few ideas which might help you either disclose a diagnosis or talk in an ongoing way to them about it.
1. Consider explaining diagnoses or disorders by explaining differences, strengths and challenges
It can be helpful to explain to some children/young people that people have different brains and bodies (even though we can’t always see this) in many ways. For example, we might say something like:
We are all different. Everyone has parts or systems in their brains and bodies which work well (sometimes we might call these “strengths”). We all have parts or systems in our brains and bodies which don’t work so well, and most people have some parts of systems of their brain and body which don’t work very well at all. Sometimes we call these challenges. When people have the same kind of challenges for a long time, sometimes we call this a disorder or a disability.
For example: your body/brain is very good at (list your child’s strengths) However the parts of your body/brain which help you (list some of the symptoms/key challenge your child has) don’t work as well as some people’s. This is a challenge for you and has been for a while now.
Some people call these challenges “Condition X” (list a diagnosis if you would like to. Please note – it’s okay to choose not to include the name of the disorder if you don’t think this is appropriate for your child – sometimes keeping the label as “adult information” is a reasonable decision).
2. Explain to children that diagnoses and disorders are not their fault
Particularly in the early days of a diagnosis, it is usually a good idea to remind young people that they haven’t done anything wrong and the diagnosis is not their fault. For example, we might say something like::
Sometimes parts and systems of our brains and bodies don’t’ work well from the time we are born – and some break down or stop working because of something which happens to us. Either way, it is no-one’s fault. There is nothing you’ve done which has made this happen.
3. Let young people know it’s normal to feel sad, tired, angry, jealous and worried sometimes when dealing with challenges (and that we will listen)
It’s important to remind children/young people that it’s okay to sometimes struggle with a diagnosis or challenge and to help them feel supported.
For example, we might say something like:
People who have challenges will sometimes feel sad or angry about the fact they have to manage them. Sometimes they feel worried about how they will cope in the future. Sometimes they feel jealous that other people don’t have to manage their challenges. Sometimes they feel embarrassed to have different challenges than other people. It’s normal to have these feelings. It’s normal to have these feelings. If you have them, would you please tell me? I’d like to be there for you.
4. Reassure them they are not alone in their challenges
We also want young people to know that there are many people (adults and kids) who are dealing with many different types of challenges and they are not alone in having challenge in their life. The risk with providing this information is that young people may feel as though we are minimizing their struggles - obviously this is something we want to avoid.
However, despite the risk it brings, I think empathically providing information that there are many others who have challenges to manage is helpful for two reasons. First, it helps young people to feel less isolated, and second it reminds them to show compassion, help and be aware of others even though they have their own challenges to manage. In the long run, this will help our children/young people feel more positive about themselves.
We might say something like this:
It’s important to know there are lots of kids/young people who have disorders/challenges. For example in every school of 100 kids, there will be X who have (state diagnosis or say “your challenge with XX). And for those kids who don’t have those challenges, there will be lots of others who have other challenges - like not being able to understand people very well, having a hard time seeing, hearing, understanding ideas, running, using their body and managing pain.
5. Let them know there are things they (or others) can do to either manage, work around or even improve their challenges
Research tells us that having hope for the future is essential for good mental and physical health. While we shouldn’t make promises to children/young people about the future, we can still provide them with optimism and hope. For example
You should know that just because you have these challenges right now and they make life different for you in some way, doesn’t mean life will always be exactly the same for you in the future as it is at the moment. Life often changes in ways we can’t predict. Your body or brain systems may change as you get older, we may find different ways to manage your challenges or you might find they bother you less when you are an adult.
6. Let them know there are positive things about having challenges
It is helpful for some children /young people to notice that their challenges and disorders – as well as being hard work – also may lead to something positive. For example, we know that challenges sometimes help children learn other skills, develop new relationships, have strengths in other areas, develop empathy for others – and cause other good things to happen in their lives.
Again, of course it’s important for us to tell children and young people about this in a way which is empathic rather than in a way which suggests they should be “happy” about the challenges they do have. But provided we do it carefully and empathically (and ensuring we have a relationship with them first) – telling children about the potential for good stuff to happen in the midst of struggle has the potential to make kids feel better. For example, we might say something like:
It can be helpful to remember that even when challenges seem mostly like hard work, there are sometimes some good things about having challenges. Can you think of anything you’ve learnt, any way you have changed or anything good which has happened for you because of the challenges you have?
I hope this gives you some ideas for how you might talk with your child/young person about this topic. As I said at the beginning, it is important to know that all children and situations are different so you may do this in a very different way for your child – and it’s likely that this is perfectly fine.
All the best with these sometimes tough, but often meaningful conversations.
Kirrilie
P.S. I have a 3 minute animation for children on Calm Kid Central called “Different Bodies, Different Challenges” and it is designed to help explain these points above. If you are interested in showing this video to your child and using the accompanying activity sheets then visit Calm Kid Central by clicking the link below.
