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Talking to Your Child About Their Disability Diagnosis

Medical experts and parents discuss the how and when of having the talk.

Special needs parenting is often grey, filled with uncertainties and questions with seemingly impossible answers. What will my child’s future look like? Am I doing everything I can to help them? Is anything I’m doing to hurt their progress? And one of the biggest questions of all: when and how do I tell them about their diagnosis?

Many parents of children with special needs wonder if there is a right age to have the discussion, or if there are certain things they should—or shouldn’t—say. But like so many other grey areas, there isn’t a one-size-fits all answer.

Still, there is a common thread among the advice from both medical experts and parents who have already navigated the question: it’s a process. This isn’t a one-and-done conversation, but rather a series of conversations that lead up to the talk, followed by ongoing discussions that evolve over time.

“It’s important for them to know that their diagnosis doesn’t define them. It’s just part of who they are.”

“First and foremost, whenever you decide to give your child the official name of their diagnosis, make sure it’s intentional and planned out,” says Michele Gortney, a licensed therapist at Rabjohn Behavioral Health Institute in Mansfield and Gortney Counseling in Burleson. “This isn’t something your child needs to overhear on a phone conversation or while trying to speak code in front of them during a doctor’s appointment.”

The “when” and “how” will be unique to your child, experts say, but as with everything in the world of special needs, the earlier you start educating your child about their diagnosis, the better. Just how early you start varies for each child.

Timing the Conversation

Laurie Williams George, of Fort Worth, will never forget her 8-year-old son Harrison’s reaction to finding out he had ADHD. “So, that’s why I’m so awesome!” he exclaimed.

For Harrison, learning about ADHD and his diagnosis gave him an explanation for why he was struggling to sit still and concentrate in school.

Harrison is also dyslexic and wasn’t reading like all of his classmates. So in the same series of conversations about ADHD, Williams George also began explaining dyslexia, without using the word at first. Later, when she felt he was ready and understood, she introduced the term dyslexia, which helped further validate his struggles.

But she’s taking a different approach with her two other children, 7-year-old Merritt, who has autism, and 6-year-old Madeline who has ADHD.

The process of telling Merritt about his autism has been drastically different, and much slower, than her experience with Harrison, their mother says. For one, Merritt doesn’t outwardly notice the differences between him and his peers.

“Since he wasn’t asking questions, I started using the question ‘Do you ever wonder…’ and then insert whatever it is I’m trying to point out,” says Williams George. “For Merritt, he doesn’t always respond when people are trying to talk to him, so I’ve asked, ‘Do you ever wonder why you don’t always respond to people?’ And then I’ll follow it up with an explanation, without using the word, that relates to that particular symptom of autism.”

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She’s learned to keep the explanation short—one sentence or less—and not to expect any kind of immediate reaction. It’s usually a week or so later that Merritt may come back and want to talk about what she’s said. And it’s been in these bits and pieces that she’s slowly introducing autism. Eventually, she’ll get to the word autism and have a conversation with Merritt explaining his diagnosis.

“He started complaining about ‘just wanting to do good in school but there was something going on in his brain.’ At that point, I knew it was time to tell him.”

Other moms have waited until their children were even older to talk about their disability. Sara Hawthorne, of Euless, for instance, waited for almost six years to tell her 13-year-old son Cedric about his ADHD diagnosis. Cedric was diagnosed at 15 months with spastic paraplegia, a progressive diagnosis that causes daily pain, weakness and stiffness in the leg muscles that will continue to worsen throughout his life. So, while Cedric was diagnosed with ADHD at age 7, Hawthorne waited until just recently to tell him.

“Cedric’s physical disability causes him a lot of stress so I waited until I thought he could emotionally handle the news of another diagnosis,” she explains. “I also waited until he was aware of the symptoms. He started complaining about ‘just wanting to do good in school but there was something going on in his brain.’ At that point, I knew it was time to tell him.”

While Harrison, Merritt and Cedric all learned about their diagnoses in different ways and at varying ages, experts agree their parents took the right approach—they waited until they felt their children were ready.

“Age, cognitive ability, awareness of their symptoms and the ability to understand and process what having a diagnosis means should all be considered,” says Gortney.

Making Words Matter

Williams George says there was a key in making conversations around her son Harrison’s ADHD and dyslexia positive interactions—she made sure that in each of those discussions, she pointed out Harrison’s positive qualities as well as his disabilities. And experts agree that focusing on your child’s strengths and challenges is important to this process.

“For example, I may tell a child, ‘you are really good at playing Minecraft but that’s a really hard game for me to play,’” says Suzanne Bonifert, rehabilitation services manager at Cook Children’s Health Care System. “Making sure they understand that everyone has things they’re good at and things they struggle with helps boost their confidence and make them feel better about the areas they may be having trouble with.”

As you get closer to telling your child about their diagnosis, Bonifert emphasizes, “It’s important for them to know that their diagnosis doesn’t define them. It’s just part of who they are.”

Before you have the talk with your child, think of what you want to say and how you want to phrase it.

“I’m also a big believer in scripting,” says Gortney. “Find the words you need and prepare ahead of time. It’s already a tough topic so better to plan out what you’re going to say rather than wing it when your anxiety may already be high.”

But the best thing you can do as you broach the topic, moms and professionals say, is to trust your instincts. When it comes to the perfect time, the right approach, and what to say, you, more than anyone else, know best.

“You know your child better than any doctor or therapist,” Gortney says, “so ultimately, it’s your choice as to when you talk to your child about their diagnosis.

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This article was originally published in December 2022.

Image: iStock