Talking About the Diagnosis

How and when should you tell your child about his diagnosis? Situations vary for child, and family. Some children have a temperament and intellect, so you’re talking about it early and often. Some children have no interest, may not be old enough to understand, or with lower intellect, may not understand and benefit from detailed explanations. Whatever your situation, there is probably some benefit from telling your child about his diagnosis.

Our son got an Aspergers diagnosis when he was in the 4th grade, and since it took 6 years of searching to diagnose him, he was well aware of the process. These were the 13 different diagnoses that were suggested over the years:
Anger management
Sensory Integration Disorder
Pragmatic Language Disorder
Obsessive Compulsive Disorder
Reactive Attachment Disorder
Emotional Disturbance
Gifted but bored
Asperger Syndrome

We talked openly about his difficulties all along, starting at age 4 in preschool. We also talked about his strengths (he taught himself how to read, he built amazing Lego creations, completed jigsaw puzzles quickly, and memorized all the states and capitals.) In kindergarten, one doctor diagnosed ADHD and suggested medicine, and we talked about how it was hard for him to pay attention in school, and the medicine could help with that. (BTW the medicine was not too helpful for him.) He went to a social skills group in 1st grade, and we talked about the reason for going (to learn skills to get along with classmates). He went to an OT after he got a Sensory Integration Disorder diagnosis. We talked about how the OT would teach him how to keep his body calm (he was dis-regulated often due to his sensory sensitivities), and to help him build strength in his hand and arms, and improve crossing midline (helping him improve in karate, which he loved.)

Your child has strengths and weaknesses, just like everyone else. If my son needed eyeglasses I would talk about the diagnosis (“The doctor thinks you have nearsightedness”) and explain how the eyeglasses help. Frankly, every time we got more information, my son was relieved. He wanted to understand himself! The diagnosis explained a lot about him. And we thought this one was the best diagnosis for our child. We read books and talked to other families with kids like this.

I think a diagnosis, when correct, is helpful. Here is one helpful thing to remember: absolutely nothing changed in your son or daughter! When we got our diagnosis, nothing was any different about our son. He was still the same wonderful, smart, quirky kid as before we had a name to call it. But it provided relief for him and for us, and we got to follow the treatments and the therapies recommended for this diagnosis. It assisted his public school in creating an appropriate Individual Educational Plan (IEP) for him. It opened up a world of acceptance in his classroom and school. Now he was finally more than just that troubled kid! He had a diagnosis and it was helpful.

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