I Have What?: Telling Children About Their Diagnoses

If you've been watching the NBC series Parenting, you know that one of the show's story lines is about Max, an 8-year-old boy with Asperger's. In the last two weeks' episodes, Max's story takes an intense and unexpected turn as he overhears his father talking about his diagnosis, leaving him and Max's mother scrambling to explain the disorder in a way that he can understand it. After blowing the talk once and consulting with their therapist, they finally get it right on the second try (see the clip below; for the full episode, click here—the botched first conversation is at the start of the episode).

 Dr. Harold Koplewicz, president of the Child Mind Institute writes that the ordeal that Max's parents faced:

demonstrates why we urge parents to rehearse in advance how they will talk to a child or a teen about a psychiatric disorder, so they'll be able to do it in a developmentally appropriate manner and frame it in a way he understands. This is true whether you are speaking to a 6-year-old about severe anxiety, a teen about depression—or an 8-year-old about Asperger's. And these kids need to hear about their disorders, in order to understand and accept the reality of their condition. If they don't understand, they can't be partners in their own treatment; they can't advocate for themselves; they can fall into even more problematic behaviors.

When a diagnosis is treated as a secret, children are often left painfully aware that they're different, without knowing why. They may go to a special school or see therapists. They may be teased or bullied. They often lack friends, don't get invited to parties and feel lonely. They probably know that they have a harder time sitting still, or reading, or remaining calm. All of this puts them at risk for anxiety and depression. Talking about disorders—not just naming them, but identifying what the feelings and behaviors are that are challenging for them, helps them make sense of their lives. You are likely offering relief: "This is why I behave the way I do, this is why things are challenging for me. This has a name and other kids have it, too." 

What you're telling kids is that they are not "bad" or "damaged." Rather, it's that their brains work differently, so they may need to work harder, but there are therapies and strategies that can help them cope and succeed. You can also stress that they have strengths and weaknesses, just like everyone else. A child with ADHD can be extremely creative, while someone with a high-functioning autism spectrum disorder can apply their focus to excel in an area that interests them.

RESOURCES

• Great article from the Interactive Autism Network on telling kids about their autism spectrum disorder (ASD) diagnosis
• National Autistic Society website (U.K.): section about discussing the ASD diagnosis with a child
• Autism Society of America website: section on explaining ASD to siblings