Tricky question 7181# : You’ve just talked to a parent who has a child who has just been diagnosed with a physical, mental health, emotional or learning disability and he/she says to you: what should I say about this to my child?
Or perhaps you work with small groups or classes of children in which some have a mental health/learning/health diagnosis (known about and observed by others in the group) – and one of them asks you: “Why is Jodie like that?”
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).
Late last year I wrote about how we support parents/caregivers of these children - but in this article I'd like to address how we talk with children and young people themselves about this topic.
There is a lack of research in this field (there is some related to the disclosure of medical diagnoses like cancer on children, and some which looks at the effects of discussing psychological diagnosis with parents) – but what is available, along with my anecdotal experience in working in this area - suggests to me that how we talk to children about challenges may have a significant effect on their functioning - both positively and negatively.
For example, when we talk helpfully to children and young people about challenges and disorders we can potentially assist them to better understand challenges in themselves and others, feel less blame and isolation, help them understand the need for adherence to treatment (when applicable), help them act in kind and compassionate ways towards others, reduce bullying/unkind behaviour and empower children to ask them for what they need.
In contrast, when talking about challenges or diagnoses is done unhelpfully, children may experience more distress(both in the short and longer term) about their diagnosis, experience stigmatism and discrimination, feel isolated/alone or developing a “learned helplessness” response in which they avoid helpful situations or behaviours.
So what are some ways in which we can discuss challenges and diagnoses with children in a helpful way?
I’ve listed some ideas below which I have found helpful in managing this situation. I should first state of course, that it is vital to seek parental/caregiver input and permission (especially with younger children) about how to and whether to have these conversations, how they might be involved and how we can present information which is consistent with how they are also talking with their young person.
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 many 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 group of challenges a disorder or a disability.
For example: Child/X’s/Your body/brain is very good at (list a child’s potential strengths) However the parts of Child Y’s/your body/brain which help you (list some of the symptoms/key challenge the child has) don’t work as well as some people’s. This is a challenge for them/you and has been for a while now. Some people/sometimes we call these challenges a word called “Condition Z” (list a diagnosis if appropriate).
2. Explain to children that diagnoses and disorders are not their fault
Particularly in the early days of a diagnosis, or when explaining this to a new group of children, it is usually a good idea to remind young people that they/the child in question hasn’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/Child X has 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 negative feelings about a diagnosis or challenge and to help them feel supported or to support others.
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. If you /see child X have/ing them, would you please tell me? I’d like to be there for you/them. (If in a group – As a group/class how can we care for each other when we see people feeling like this?
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 this risk, 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.
As a side note, my experience is that if we provide this information to children/young people, it is often helpful to let parents know these potential benefits so they have the rationale for this part of the conversation in advance.
It’s important to know there are lots of kids/young people who have disorders/challenges and you/child X is not alone. For example in every school of 100 kids, there will be X who have (state diagnosis if appropriate or say “your/Child X’s challenge with XX). And for those kids who don’t have those particular challenges, there will be lots of others who have other kinds of 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. I’m saying this because I want you to know you are not alone in having to manage this.
5. Let them know there are things they (or others) can do to either manage, work around or even improve their challenges
We know that a sense of hope for the future is essential for good mental and physical health – in both adults and children/young people. While we shouldn’t make promises to children/young people about the future, we should still provide them with optimism and hope. There are many ways in which we can provide this. For example
You should know that just because you/Child X have/has these challenges right now and they make life different for you/them in some way, doesn’t mean life will always be exactly the same for you/them in the future as it is at the moment. Life often changes in ways we can’t predict. Your/Child X’s body or brain systems may change as you/they get older, there may be different ways to manage your challenges or you might find they bother you less when you are older.
6. Let them know there are positive things about having challenges
It is helpful for some children /young people to notice that challenges and disorders have the potential to help them learn, develop new relationships, have strengths in other areas, develop empathy for others – and prompt other positive life events. Again, of course it’s important for us to tell them this in a way which is empathic rather than in a way which suggests they are “not allowed” to experience struggle. But provided we do it carefully and empathically (and ensuring we have a relationship with them first) – telling children about the potential for meaning in struggle has the potential to reduce distress and increase optimism in children with challenges.
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 of sentences which are useful in talking with young people about disorders and challenges.
Hopefully it also goes without saying that there are no hard and fast “rules”. What we say will depend a great deal on the age of the child/young people, what they already know, their situation and their own strengths and challenges.
All the best with this often thought-provoking but usually meaningful conversation.
PS, if you would like to show primary aged children a short video about this topic, we have a 3 minute animation on Calm Kid Central called “Different Bodies, Different Challenges” and it is designed to help explain these points above. It comes with an activity sheet, discussion guide and poster. Click below for more information.
PSS, I have an equivalent article for parents on this topic, about how to talk to their child about challenges and diagnoses – if you’d like to provide it to any parents/caregivers please feel free.