Sharing a New Diagnosis with a Child

A question that often comes up after learning a new diagnosis for a child is- Do I tell my child? Do I wait or tell them now? How do I tell them? This is very much your decision as the parent. You are the expert on your child, and may have a sense that they need just a little more time, or a chance to be in a different head space before you share. I’m about to share reasons to tell soon, but please keep in mind that I honor and respect the wisdom you as the expert parent bring to the decision.

Anecdotally, I do know of two different families where the child learned the diagnosis by accidentally overhearing a therapist or tutor say something. Sometimes when we wait an extended time to share information (for example- about something quite significant on the news, or puberty talks,) the kids may hear about it elsewhere first. I would rather get to bring intentionality into the introduction of new, important information. Also, if your child has a diagnosis, chances are that they are aware of some kind of difference. Telling them the explanation can be an affirming “aha!” experience. It may be an opportunity to shut down the growing narrative in the child’s mind that they are deficient in some way. Unbeknownst to me until much later, my brother grew up carrying the secret narrative that he was stupid. Throughout school and college he was compensating for unidentified learning differences. As an adult, when he finally learned that he was a bright guy with learning differences, it was healing and affirming to understand. He would have preferred to know sooner.

In a podcast interview, 12 yr old Asher encourages parents to share the information with their children. From a child’s perspective and having a learning profile that includes ADHD, autism and giftedness, he says if you don’t know the reason for your struggle, then you are more likely to feel self-blame and insecure.

Once you are ready to share with your child, here are some tips:

Let yourself process and understand the information. Confirming a diagnosis can absolutely be affirming, energizing and helpful. I’ve also experienced this as a time where I felt confused, sad, guilty, lost. You may go through a full range of emotions and thoughts. Give a little space and time to process and accept before telling your child. Your energy and attitude about the information will inform a child if they should feel worried or calm about this news.
Ideally you received a lot of information, next steps, and accommodation recommendations for your child’s diagnosis. (If not, then start there!) Now, find out all you can about the strengths of that kind of neurodiversity.
When you are ready to share, consider sharing in layers. This was psychologist Dr. Dan Peters’ suggestion, in a video blog for the Bright and Quirky Idea Lab. Layers might even start by you leaving out (strewing) books that your child could choose to read. See below for book ideas. You don’t have to share everything at once. Share the strengths that you see in your child, the strengths of the neurotype. Be detailed and specific about the strengths you see. Don’t be afraid to use a noun: You are a creative thinker. You are a faithful friend. You are an artist. You can ease into the diagnosis by also explaining that some of the child’s struggle with x can be explained by this new information. Now we know, which means we can recalibrate to make things better.
Make it special! Author and advocate Debbie Reber mentions in her podcast, Tilt Parenting, that she liked to take her son out for frozen yogurt for big conversations such as sharing a new diagnosis.
Identify other people in the world who share the same learning profile or attribute. Some may be in your family. Others might be scientists, authors, actors, architects, musicians. Your child is not alone, and they are in good company! When I shared with my son that he is dyslexic, I told him that Dav Pilkey, the author of the Dogman graphic novels is also dyslexic. “You are like Dav Pilkey!” The author has a blurb about his ADHD and dyslexia in the back of each of his books.
If you have a teen or tween who is not receptive or willing to hear the news from you, Pediatric Neuropsychologist Dr. Preetika Mukherjee suggests taking a backstage approach and bringing in another trusted adult to help. Sometimes during that stage where teens are pulling away from their parents, they are more receptive to hearing the information from someone else. Empower another trusted adult rather than try to force the conversations. If there has been a narrative around parents mistaking struggle for laziness, it is possible some repair work needs to be done.

Great podcasts/video all about sharing a new diagnosis with the child: