Your Child Has A Neurodevelopmental Disorder - How To Process It & When To Tell Them
Parents are faced with many difficult decisions throughout the course of parenting. This is especially true for parents with children who struggle. If your child has been diagnosed with a neurodevelopmental disorder, including…
… this article is for you!
Receiving a diagnosis for a child results in mixed feelings for many parents. Reflect on the following stages of emotional processing to identify which one(s) you have moved through and which one(s) you are currently in as you continue to process your child's diagnosis.
Denial that your child meets criteria for the diagnosis - many parents seek out second and more opinions hoping to debunk the initial diagnosis.
Relief to be able to put a name to your child's symptoms - many parents find comfort that a diagnosis can account for their child’s challenges in a way that once felt unexplainable.
Anger that your child is burdened with a disorder that creates obstacles for their learning and success - a child’s diagnosis can result in big feelings of injustice and anger.
Fear and worry around what the diagnosis means for your child’s developmental outcomes and future outlook - many parents worry about the impact of their child's diagnosis on their friendships, capacity, learning, future, independence, and success.
Sadness for your child to have to navigate the world with additional challenges - many parents feel a heartfelt sense of empathy and sympathy for their child and their challenges.
Guilt and shame around feeling responsible for your child's diagnosis - neurodevelopmental disorders are genetic and this can result in parents feeling responsible for their child's struggles.
Grief for the child you thought you had - a diagnosis changes many things including when and whether children hit developmental milestones and their capacity to live a fully independent life as an adult. Many parents go through the stages of grief as they transition from raising the child they thought they had to raising the child they have.
Acceptance and acknowledgment of the child you do have - ultimately, as parents work through these (and other) reactions toward acceptance of their child’s diagnosis, they are more able to adapt as needed to support their child in ways that promote optimal outcomes.
Self-insight - when parents recognize that there is a genetic component to their child's diagnosis, they often reflect on their own challenges and may decide to seek out their own assessment. Parents who realize they too have lived with an undiagnosed disorder are faced with the challenge of emotionally processing their own disorder as well as their child's.
It is important for parents to find their bearings before talking to their child about their disorder. Counselling, while not necessary, can help you with the following:
Process your own emotions around what the disorder means to you as a parent, your child, and your family;
Gain accurate information around what the disorder is - what it means for your child's brain, how brain differences gives rise to the symptoms you see, what you can realistically expect from your child at their stage of development, and what intervention can support your child's developing capacities;
Gain support for yourself so that you can support your child the best way possible - it can be a lonely experience raising a child with a neurodevelopmental disorder (if you don’t already have friends or family who can relate). Developing a social and/or professional support network is important so that you have people to count on and connect with as you move forward in your parenting journey.
Once parents have processed their own thoughts and feelings around their child’s diagnosis, feel as if they have an understanding of what the diagnosis is all about, and have some form of social support in place - they often feel more grounded, clear, and confident in their role as a parent. When you get to the point of having knowledge of the diagnosis and curious compassion for your child and parenting journey - you are in the right mindset and heart space to have the talk with them. Here are some questions that many parents have when it comes to telling their child about their diagnosis:
How old does my child have to be to understand? The consensus is that when a child is old enough to be assessed for a diagnosis, they are old enough to learn about it in a developmentally appropriate way.
Will I make things worse by labelling them? Your child already knows they are struggling and likely feels different from their peers as it is. By giving them an explanation that accounts for their struggles, you can help absolve them of self-blame/ shame as they start developing an accurate understanding and view of themselves.
How will this conversation impact them? This conversation with your child may likely have a lasting impact on how they see themselves - so you want to be mindful, sensitive, and intentional in your delivery. If you notice your child beginning to shut down, become bored, or feel upset - it is time to gently end the conversation.
What do I need to cover with them? This is not a one-time conversation. It ought to be informal and there is no urgency to share everything on your mind. Find a place and time that is optimal for a heartfelt conversation and take it slowly. Keep in mind that there will be many moments that arise (when your child struggles) for you to build on this initial conversation with them.
How do I tell them? Your child can only understand so much - be sure you are acknowledging their strengths and challenges in a way that aligns with your child’s developmental age and maturity level. Demonstrate understanding, acceptance, and compassion for your child so they can learn to relate to themselves in the same way.
When you are ready to have that conversation with your child, here are some points to keep in mind:
Take it slow, pace yourself, and take your child’s lead on whether to pause the conversation for another time or keep going - make it about their needs before your own. If your child shuts down, validate their need for time and space to reflect and process it all - take a step back, give them space, and respect their boundaries.
Use creative metaphors that your child can understand to help them make sense of their diagnosis. For example - for ADHD, the brain is like a race car with bicycle breaks; for ADHD, we can imagine symptoms as the tip of an iceberg; for emotional dysregulation, their feelings are too big for their little bodies handle; for cognitive inflexibility, it’s like they stepped in glue and can’t get unstuck from it; for executive functioning challenges, it’s like there is a huge pile of papers and not enough filing cabinets or folders to organize them all; for communication challenges, it’s like visiting a foreign country where it’s difficult to understand and express oneself.
Normalize that everyone has strengths and challenges - help them recognize that there is nothing inherently “wrong” or “bad” about them.
The diagnosis is just one part of them - help your child see this through the use of visuals or drawings. For example, you can draw many circles that represent their many qualities, capacities, traits, strengths, interests, limitations, and challenges so they can recognize that the disorder does not define who they are.
Allow your child to have their own reaction to the news - be prepared to validate and support them through their emotional journey and answer any questions they may have in a calm and compassionate manner.
Let the diagnosis empower you both to understand your child's struggle better and explore intervention strategies that can help them.
Identify role models to help your child be able to relate to positive influences - when children hear about other people’s success stories, they are reminded that they are capable of success.
Remind your child that they are capable and you are on their side - reassure them that you will offer and find them the support they need to do well and that you are always here for them. Encourage them to speak up and listen when they do. Give them space to make mistakes and learn without repercussions. Know that your child is doing the best they can and they need your help when they are struggling.
Take responsibility and apologize to your child if you parented them in a way that made things harder for them, without knowing the nature of their struggle - some parents realize that they had unrealistic expectations for their child and punished them for things that they simply could not do.
Make time to check-in with your child after this conversation because it is not a one-time conversation to be had.
Now that you and your child know about their diagnosis, there are many ways to proceed:
Register your child for recreational activities with other kids they can relate to. A sense of belonging is valuable for all children and help to remove any shame or stigma they may otherwise feel among children who don’t share their struggles.
Give your child a sense of agency in their journey to give them a sense of control in their life. This means talking to them about who gets to know about their diagnosis - when and where and how that person gets to know - and inviting your child to be an active participant in problem-solving their struggles with your help.
Support your child to advocate/ speak up for themselves - to notice their challenges and what they need, to ask for help, to craft emails to their teachers to bridge connections, and to participate in school meetings to determine their learning goals and strategies for success.
Hear and see your child for their strengths and their struggles. Sign your child up for activities that they do well in and praise them for their successes. Challenge them appropriately to learn and grow. Be their soft landing place when they feel discouraged.
Cultivate a secure attachment with your child so they can confide in you - this will help shield them from the vulnerabilities that come along with a diagnosis, including shame, low self-esteem, isolation, anxiety, and depression.
Do not allow the diagnosis to be an excuse for inappropriate behavior or for giving up - be your child's role model and collaborator to help them calmly problem-solve and troubleshoot toward success.
When you notice your child struggling, reach out for support. There are many counsellors, psychologists, and other mental health professionals trained to work with children, parents, and families who struggle with neurodevelopmental disorders.
To end, it is critical that you process your emotions around what your child’s diagnosis means to you and gain accurate information before speaking with your child. When speaking with your child, be sure that you convey the message that they are loved, accepted, and capable - just as they are. Support your child to gain an accurate understanding of their diagnosis, strengths, challenges/ areas for growth, and needs. Support them to problem-solve, advocate for their needs, and implement effective strategies as they continue to face their struggles, persist, learn, and grow. Lastly, parents of children with additional challenges and needs have additional challenges and needs themselves. Be sure to develop a support network for yourself in your parenting journey to uphold you when the times are tough and celebrate with you when things go well. You are not alone.
- Written by Cynthia Yoo, Registered Psychologist -