Explaining Multiple Diagnoses To Kids
Finding developmentally appropriate, positive, non-overwhelming language to explain one diagnosis to a child is hard enough…
But what about when the child has multiple diagnoses?
Recently, Dr. Claudia Rutherford, Licensed Psychologist, emailed me about the following profile:
“I have a child I’m working with now who is Autistic, ADHD, has a writing disability, anxiety, and depression. I’m thinking through using some of your [feedback] ideas with him and also don’t want to overwhelm him with terms. At the same time, he is 15 and needs to know the terms at this point.”
This profile is not uncommon. Many autistic children are also identified as ADHD, struggle with writing, and – by their teen years – are feeling the emotional impacts of being a different kind of brain.
So, how do we decide what to share with this kind of complex profile?
How to Decide What to Share
It’s tricky to balance not overwhelming the child with making sure they have enough information to understand themselves. This is especially true for teens, who are fast approaching a time when they will have to advocate for themselves in the world.
To help me decide what to share with a child with a complex profile, there are 4 key questions I ask myself:
- What does the child already know?
- What questions are they asking?
- What interventions are we offering?
- Where is the overlap between their various diagnoses?
What does the child already know?
During the assessment, I typically ask kids what they already know about their learning or developmental profiles.
For example, a child may already know the term ADHD and be comfortable with this term. If the testing results concur, this is the most helpful place to start.
It’s worth noting that while a child may already know a part of their diagnosis, this does not necessarily mean they understand that part of their diagnosis. Often, I find that we need to redefine what we mean by something like ADHD, to make sure the child knows about the strengths included, as well as the challenges
What questions are they asking?
I find it helpful to think about bringing the child one more step on their journey to understanding themselves.*
To figure out what that step is, I typically go back to their assessment questions.
If the child has asked about it, they are more likely to be ready to hear the answer.
(You can learn more about helping kids ask assessment questions in this webinar.)
For example, if a child asks about attention and focus, it opens the door to talk about ADHD. If a child says they struggle with sensory overload, it may be helpful to talk about Autism.
If the child has not identified it as a problem, I don’t tend to share that piece at the feedback session. They are more likely to reject it, and it will not likely help them take that next step on their journey.
In these cases, I make sure the adults in the child’s life have the language they need to explain that piece if/when it does become relevant for the child.
*See Tharinger, et al. (2008). Assessment Feedback With Parents and Preadolescent Children: A Collaborative Approach; Professional Psychology: Research and Practice; Vol. 39, No. 6, 600–609
What interventions are we offering?
Children are likely to benefit most from an intervention when they know why they are receiving it. For this reason, I’ve found it helpful to prioritize information that will help the child understand why they will be getting a certain type of support.
For example, if a child will start seeing an Occupational Therapist, I make sure we talk about the piece of their diagnosis that relates to that support.
For a child with multiple diagnoses, there are often multiple benefits to any given service. For example, people work with Occupational Therapists to help with focus (ADHD), sensory overwhelm (Autism), and writing (Dysgraphia).
Using the child’s words is particularly important here, to help them make a connection between the support they receive and a problem they want to solve.
Where is the overlap?
Many diagnoses are overlapping. We might not need to explain every diagnosis to help the child understand the key point of their profile.
For example, sometimes it can be helpful to include challenges with pragmatics under ADHD, or difficulties with attention under dyslexia, as these are common components of each diagnosis in and of themselves.
This way, I can address the main challenges a child is facing, without overwhelming them with a bunch of diagnostic terms.
Here is how Dr. Rutherford approached feedback with her teen client with multiple diagnoses:
First, I focused a lot on the concept of neurodiversity. Based on this child’s history, I thought it was important to start by giving the message that he is “different” from the majority culture but not “wrong.” I am not sure he has ever gotten this message.
From there I mostly focused on autism, which is a diagnosis he already knows he has. However, I don’t know if anyone ever talked about the “highways” of autism, only the construction zones.
I saw him over Zoom, so I took out the Assessment Summary sheet and showed it to him blank and then told him I would fill it in during our session and send it when we were done.
Under Helpful Words, I put “neurodiversity” at the top and then Autism and ADHD/Executive Functioning under that header. I included writing difficulties here as well.
Then I made a separate header under Helpful Words called “side effects” that can wax and wane. I put anxiety and depression there.
I wanted to convey that anxiety and depression are conditions that often arise when you are neurodivergent and trying to live in a majority culture that is not geared towards you. He does not recognize that he is anxious and depressed so I figured I should start by putting on the table that maybe these feel okay now but they can go up and down depending on many factors in his life.
This is what her explanation looked like on the Assessment summary sheet:
During our conversation, I mostly focused on the highways and construction zones of autism. I showed him some lists and had him tell me which ones resonated for him, then had him add any others he thought of. I then added some from the testing and had his father chime in.
Finally, I put up a comic from ADHD Comics that lists all the positive attributes of ADHD. Again, I had him list the positives, so it wasn’t all about the executive functioning challenges which he already knows and acknowledges.
Dr. Rutherford reported back that this approach helped this young person start to develop a vocabulary for talking about his unique brain. Even more importantly, the family left with a way to keep the conversation going and support their child as he continues to develop a positive and empowered sense of self.
I hope this was helpful for thinking about feedback with kids with multiple diagnoses. If you have another question about feedback with kids, please feel free to reach out!
Tools for Talking to Teens and Tweens
Talking with adolescents about their testing results can be particularly tricky, especially if there are multiple pieces to their diagnosis.
Research tells us that assessment feedback works best when it is done in small pieces and in collaboration with the client. But what does that look like in practice?
I’ve developed a workbook to help guide me and my client through a collaborative assessment process, so that the child leaves the assessment feeling empowered and knowledgeable about their brain.
This book has been a game-changer for my practice and I hope it will be helpful to you, too!
Thank you for all you do to help children understand their amazing brains! If this post could be useful to others you know, please share!