To Tell or Not to Tell:  Does My Child Need to Know About Their Disability?

A friend of mine has a son who was diagnosed with high-functioning autism/Asperger Syndrome many years ago. Her husband didn’t believe the diagnosis. She didn’t tell her son. It made me wonder if it’s best to tell or not tell your child about their disability.

When Brendan was diagnosed with high-functioning autism/Asperger’s Syndrome, my husband and I agreed that he needed to know about his disability. I found a book titled, All Cats Have Asperger Syndrome. It had cute photos of cats with captions listing distinct characteristics.

We read the book together. Brendan immediately got the association of symptoms and the challenges he faced. He asked me if he had Asperger Syndrome and I said yes. The book opened a great dialogue. Brendan talked about how the cats had cool abilities (like climbing trees and purring). He related to some characteristics but not others.

It also left the door open for future conversations.

While the book provided an opening to discuss his disability, it made me aware of Brendan’s need to understand high-functioning autism. He already knew he was different from his classmates. The label, at least for Brendan, was a relief. Facts made sense to him. Knowing his diagnosis helped him deal with issues as they came up.

Knowing about his disability did not come with a pass. Brendan needed to know his challenges, but we did not want him to use those challenges as an excuse. Knowing that stress might bring negative behaviors, he learned how to let his teachers know when he needed a break. Organizing schoolwork or home activities was hard, so he had to follow a written schedule (he didn’t like using a picture schedule) to get through a day.

The diagnosis helped him understand the need for the structure in his life.

As parents, we have the right to decide when or whether to tell our child about their disability. My friend chose not to tell. For our son, the decision to tell was the right decision. Brendan was aware of his challenges and used the tools given to him to better navigate his life.

Connecting with other parents is one way to share your thoughts and get information from others who have experienced.