Your Child Receives a Diagnosis: Do You Tell Them? And How?
Cross-posted: Bjorem Speech Blog
Coming across this image, I knew immediately that this blog post was incredibly necessary to share with families and other therapists. After completing an evaluation, I make it a practice to discuss my impressions with the parent(s) immediately so they can go home with the power of information, some questions answered, and terms to Google. This discussion almost always includes a preliminary diagnosis of dyslexia and/or a language impairment, as those are my areas of expertise. Often, a question I receive is: “Do I tell my child that they have XYZ disorder? And, if so, how?!”
You, as a parent or a therapist, may be hesitant to have this conversation with the child. But consider this...
Providing a parent with a child’s diagnosis of a learning difference*, I am often met with tears. When I ask “Are these happy or sad tears?", the response is usually "Both—I am sad that my child has this…but I’m so happy to know that I’m not crazy, I’m not imagining things or over-reacting, that this isn’t my fault for not doing enough as a parent, that there is now something we can do since we know what’s going on.”
Wow! Look at how powerful a diagnostic label can be for parents! Our parents spend weeks, months, even YEARS wondering if their child’s difficulties are their own fault and questioning if it will be this way forever. Now, stop and shift perspectives. Put yourself in your child’s shoes. [We’re talking school-aged children here…as young as kindergarten]
[*I use the term learning difference with my students and families; not learning disability. Hang tight for a blog post on that topic later]
Your child knows they are different…and that they’re struggling.
In my practice, I see the signs of children noticing this in 1st grade. The child may become the class clown, develop behaviors, withdraw socially, etc. to avoid challenging academic and social tasks. Overtime, this becomes much more serious. High school students come into our clinic with anxiety and depression, socially isolated from peers, lack motivation for academics, want to drop out, etc.
Providing your child early on with a diagnostic label allows them to separate the disability from the person. Consider the parent from above, who was crying with joy that their child’s difficulty was not their fault. Children feel the same way! Your child might feel like they are dumb or not trying hard enough when, really, they have a neurodevelopmental condition impacting their ability to learn, regardless of their IQ or effort level. There is freedom in knowing that school is hard for a very specific reason. Their reactions will likely be the same: "I’m not crazy. I’m not imagining things. This isn’t my fault. It’s not that I’m not trying hard enough. Maybe someone can help me to make school easier now.” I have heard these very reactions!! When explaining to an 18 year old student all about her learning profile and learning differences, she responded “I am smart! I just have to get through the language to show everyone how smart I am!” I teared up with joy to see my student so incredibly empowered.
A diagnosis also allows an individual to better understand what tasks/situations will be easy and which will be difficult; in what situations they will require support (either from other people or technology); to advocate for themselves in all situations from reading a menu to discussing coursework with a teacher. A diagnosis is the first step to understanding one’s learning profile.
So, when I’m presented with: Do I tell my child that they have XYZ disorder? And, if so, how?! I respond...
"You, as parents, know your child best and what your child can handle; however, my answer is always the same…If this was my child, I would not hesitate to talk with them about their learning difference and what it means for them.”
Now you’re likely wondering: How do I have this conversation with my child?
After sending home a client with a diagnosis of dyslexia a few years ago, they returned for their first treatment session to tell me that they both (a mother and her elementary-aged son) sat down at the computer together and Googled the term “Dyslexia”. His mom would read some information and they would stop and discuss it together. They both came to realize that this diagnosis explained so much. He came to realize that school was hard because there is so much reading in school, and that that isolated skill (i.e., reading) was difficult for him. Not because of his intelligence. Not because he wasn’t putting in enough effort.
Other parents have chosen to research the diagnosis themselves and speak with their child afterwards, explaining in a developmentally appropriate way. Now these knowledgable students ask me questions during sessions such as “Is this task hard for me because of my dyslexia?” or “Why is expressing myself so hard for me and not others?" I LOVE these questions. It allows an opportunity for me to educate my clients on the brain-based differences between them and their typically developing classmates, to help them separate the disability from their person, and to help them understand how to best navigate their unique learning differences.
For very young children:
You don’t need to use big technical terms like dyslexia to help them appreciate their learning differences. But you can and should acknowledge that some tasks are more difficult for them and might require more effort. Simple statements such as “I know reading (or finding words or telling stories) can be challenging” provides them with validation that this task is, in fact, challenging for them. They are not imagining it. Use the suggestions that I employ with all of my students below to help them separate the disability from their person and stay motivated during tough tasks.
For my high school students:
I ask their parents for permission and will speak one-on-one with their child. I go through their diagnostic report either before or after their parents have spoken with them, depending on parent wishes. We read the report page by page and discuss every standard score and what it means in reference to their academic and social functioning. Often, I will plot this information on a normal bell curve in order to help them see their areas of strengths and weaknesses. Occasionally, I will send my students home with adolescent-friendly reading material such as a book about dyslexia or executive function disorders. Hearing about their learning difference from multiple sources (e.g., me, parents, reading material) can help them connect the dots and appreciate the impact.
For all of my students:
When discussing anything related to their learning profile or learning differences, I refer to the brain rather than the person. I find that focusing on what is easy/challenging for the brain helps children and adolescents separate the disability from the person. For example, “Your brain sometimes has a difficult time finding words in your mental dictionary". Phrasing a learning difference in this way alleviates the child's feeling that they would be able to do this if only they tried harder. It helps them understand the origin of their learning differences.
Praise your child for the effort they put forth in these areas and discuss that effort trumps ability every time (e.g., “I like how hard you’re working” rather than “you’re so smart”; “Look how much more you can do when you work so hard!”).
Read this Social Thinking article on more ways to discuss strengths and weaknesses with elementary-aged children. Talk about how everyone’s brains are different and everyone has different strengths/challenges. Provide them examples of areas in your own life where something important is difficult for you and how you work extra hard to compensate for that. I often discuss with my students that I have a hard time with basic arithmetic and with spatial reasoning (perpendicular parking is a real challenge for me!!).
But won’t this give my child an excuse to blow off academic tasks and to not try?
I hear this fear from parents, therapists, and teachers all of the time. Here’s the thing…I do not see this happening in my practice. In fact, I see the opposite! When children and adolescents understand their learning differences, they regain confidence and motivation and know how to navigate them, I see increased engagement in academic tasks.
Now, it may take some time for children, especially those who have been living with an undiagnosed learning difference for a few years, to come to fully understand what is going on inside their brains. They may need to unlearn previous habits and rebuild new ones. These things take time. While the transition is happening, I continue discussions about my own challenges and how, even though I am horrible at parking my car, I still have to do it EVERY DAY. It just takes more work/time for me. Sometimes I have to park further away so I can find a spot I know I can navigate into. And, sometimes, I have to rely on technological support (back-up cameras) just as students may need to do for theirlearning differences.
If you have questions or are unsure about how to approach this topic with your child, give Children's Therapy Services a call! Our highly trained school-aged service providers (speech-language pathologists, licensed counselors, occupational therapists) can provide coaching every step of the way.