One of the major conundrums facing special needs parents is whether to tell your child about their diagnosis. This is especially tricky in the early years when they are younger and less aware of what their diagnosis means. It can also be contentious as they get a little older, especially if there is concern this knowledge could be used in negative ways by the child and/or their peers.
We’ve been on both sides of the fence. We were very open with our eldest son yet we held back this knowledge with our eldest daughter, as their situations were very different.
For Gilbert, we’ve been open from the very start about his many diagnoses. Since he received his first one, aged 11 weeks old, we’ve always been aware of his additional needs and we’ve raised him to be aware of them himself, so he can ask for help when needed. This knowledge was an advantage for him, as it allowed him to access assistance and get help from others.
For Matilda, we didn’t share her diagnosis immediately, with her or with many others. Initially, we didn’t want a label to influence others’ perceptions of her ability. We also didn’t want to give her an easy way out of difficult situations by using her diagnosis as an excuse.
Over time, however, we realised we made a mistake in not being honest about her diagnosis from the start. When Matilda came home in tears one day because she felt left out and so different to her peers, we realised we needed to share her diagnosis with her, despite our fears.
Her need to understand herself, her diagnosis and her needs was far more important than our fears that a label could impact negatively on her.
So, we told her. She’s never looked back.
There are many reasons we should be honest about a diagnosis with our kids. In my experience, these reasons trump every reason NOT to tell them. We need to remember it’s THEIR diagnosis, not ours. We need to understand we are not helping them or protecting them by not disclosing this information.
I believe it’s vital we share a diagnosis with our kids from an early age, to promote self-advocacy, de-stigmatise their condition, build their self-esteem and give them the chance to embrace their differences on their own terms.
Here are 5 reasons you should tell your child about their diagnosis
Sharing the diagnosis gives them a better understanding of their needs
From experience, I know this is true. If you’re open about a diagnosis and what that means for your child, they will eventually understand why they feel and behave the way they do. This was a big game changer for Matilda. Before she dicovered she was autistic, she felt out of place, inadequate and alone. She struggled with so many aspects of her life and she didn’t know why. She thought she was clumsy, stupid, uncoordinated and unworthy. When she realised there was a reason for how she felt, she was able to accept her differences and understand why she needed help in certain areas. This knowledge gave her the power to better understand her needs and seek help in meeting them.
Being honest about a diagnosis provides an answer to why they feel different
Not disclosing a diagnosis is not going to make your child feel better. Chances are, they already feel different. Like Matilda felt prior to being told about her diagnosis, they may feel out of place, inadequate, isolated, confused, unworthy and different to their peers. Protecting them from a diagnosis withholds information that can help them make sense of why they feel different. It can be the lightbulb moment they need to understand themselves and why they are who they are. Giving them this knowledge gives them understanding and belief – it gives them a reason for why they feel different and a way forward to live their life with the best supports possible.
Telling them about their diagnosis allows them to take ownership of their condition
Knowledge is power. When you live in denial or live in ignorance, you can’t be proactive. You can’t move forward because you don’t know how. You might think your child is too young or they won’t understand, but being open from the start gives you the chance to positively discuss their diagnosis and set the tone for their future. Your child might surprise you and take in more than you expect. Even if they don’t seem to fully grasp what you’re telling them, it’s a step forward for everyone. Remember, this information should come from you and shouldn’t be something they hear from classmates, teachers or others. Talk to them in positive terms about their diagnosis from the start so they hear it from you first.
Being open about a diagnosis removes stigma and fear
Often, we perpetutate stigma and fear by hiding a diagnosis from our kids and those around them. By being open and honest, we can normalise diagnoses and help others in the community become more aware of our child’s needs. Many people are not familiar with disability or special needs because they don’t have lived experience of their own. They only have assumptions and popular references to use and these are often incorrect. It makes sense to counter these assumptions and misconceptions by getting out there and living a life in the open. The more open and honest we are, the less stigma, fear and misunderstanding will remain. It all starts with us sharing the diagnosis with our child.
Providing this information helps them feel less alone and find their tribe
I’m seeing these benefits as my kids grow older. Now they’re in high school, they are beginning to find their tribe – kids like them who prefer to socialise in structured ways, share their special interests and accept them, quirks and all. Just as a diagnosis and a label helps us find support as parents, the same goes for our kids. Giving them a name for their condition will help them find others like them and will help them find their place in a world that’s not made for those who are different. Understanding their diagnosis will help them find support, better understand their condition, seek help and improve their self-advocacy skills as they grow up and become more independent.
After taking different approaches with both my older kids, my experience has shown that it makes sense to tell your child about their diagnosis. I feel it’s the best way to move forward, for you and for your child, for all the reasons above. If you’ve had a different experience, I’d love to hear from you too, so I can understand all aspects of this issue.
Do you agree you should tell your child about their diagnosis?
This post is part of our new series “5 Things Special Needs Parents Should Know”. If you’d like to submit a guest post, or if you have a topic you’d like covered as part of this weekly series, send your idea to firstname.lastname@example.org
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I used to avoid using the word “dyslexia” with our son because I didn’t want to label him. But then an adult told me of the relief they felt when there was a word to describe their challenge and that they weren’t alone. So now I use it frequently.
Everything you say above makes sense.
Makes so much sense – especially your comment about how it’s their diagnosis, not yours.
Another wonderful, helpful post. I’ve always identified as being different, and assumed it was because I was difficult or in some way at fault. In my early 20’s I was diagnosed with Bipolar. It gave me some answers for my default reactions to things. I felt like things just clicked and I could totally ‘get’ myself in a way I never had.
This was a really informative read. Thank you for sharing your own experiences too.
Thank you for sharing this post and your personal experience. It can seem like you’re protecting them by leaving the labels out but then it’s harder to understand themselves when they don’t know all the pieces. Great post.
It must be a challenge to do this in an age appropriate way!
You are so wise and this wisdom gleaned from your real life experience is what I am sure will continue to help others and open conversations. Labels per se can be a challenge for some, but in this case it is about educating the child to understand aspects of his or her behaviour/appearance etc which must be for the better. Of course, only a parent knows whether this is what is needed for a child. I would be pretty cross if others decided to apply the words of conditions etc without parental permission or knowledge.
Thank you for linking up for #lifethisweek. Next week’s optional prompt is “My Home Country” 28/52. Denyse x
This is such a great post. So considered. Thank you for sharing it. I like how you’ve included all the reasons you considered for not telling them as well.
Very well written, thank you! Just came across the site today.