When Is It the Right Time To Tell Someone About Their Disability?

By: Kerry Magro – Self-Advocate, National Speaker, and Author

“When should I tell my child my child about having an autism diagnosis?”

Oh, if I only had a nickel for every single time I’ve heard that question.

My conversation about my autism diagnosis came about when I was 11 and a half years old when I was playing celebrity disability bingo in one of my social skills classes. During the game, I learned about celebrities such as Michael Jordan had Attention Deficit Disorder and Magic Johnson had Attention Deficit Hyperactivity. After the game was over, our teacher said that each one of these individuals was “special” just like us. After the class period, I asked my teacher, “Why am I special?”

She looked like she was a deer in headlights. She then told me point blank that I should talk to my parents about it.

After school, I sat my parents down and for the first time they told me about my autism diagnosis but they told me about it in the best way possible. They said to me:

“Kerry, you have something called Pervasive Development Disorder, Not Otherwise Specified (PPD-NOS) that is a form of autism. This means you learn differently but that doesn’t make you any less of a person.”

Being 11, I was ok with that response and went along to watch Teenage Mutant Ninja Turtles without a care in the world. Years later, I would go to my parents along with researching online about autism, and that’s when I would for the first time become an autism advocate. I would later become a self-advocate and sit in on my IEP meetings to learn more about my strengths and weaknesses on the autism spectrum. I truly believe to this day this has helped me self-advocate for my younger mentees on the spectrum as a professional speaker and mentor.

When I go out to speak today, I often say that for those who are high-functioning, no matter if it’s autism or another learning disability, that they should learn about their diagnosis as early as 8 years old so they are able to self-advocate for themselves as they grow up. I often call it a “self-advocate early-intervention plan.” At the end of the day, it really comes down to that family’s guardians. The parents are the child’s greatest advocate; therefore, by establishing a rapport, they should be able to figure out the best time for this conversation to come up.

On the other side of the spectrum, I’ve often heard from parents who say things such as “I don’t want to tell my child about their diagnosis because I don’t want them to feel ‘different,’” and I get that. What I hope, though, is that as we focus more on inclusion and the acceptance of others so that those with a disability will be able to be accepted for exactly who they are and the conversations can come as early as possible as part of a child’s early intervention plan. That’s truly the goal for me.

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