When I Say, 'My Child Is Autistic,' and You Say, 'I'm Sorry'

It took me a while to be able to say the words “My daughter is autistic.” For a while, even when I said them to myself, they sat like lead on my tongue. When they did come out, it sounded like a stranger’s voice or an awkward attempt at speaking a foreign language.

It took even longer for me to be able to use those words in everyday conversation. Piper had a diagnosis for months before I even hinted at it on social media. Beyond a small group of friends and immediate family, the information was on a need-to-know basis. This wasn’t because I was ashamed or sad; it was more of a motherly attempt to protect her. What I feared the most was that once those words were out there, people wouldn’t see “Piper” anymore. They’d see a preconceived notion of autism first.

After a while, I realized saying those words wouldn’t change how my friends looked at Piper. I realized if they did, then perhaps friendships would be reevaluated and the circle would get a little smaller. When I finally decided to share, I did so casually and received a warm, genuinely supportive response –the kind you would expect to receive from true friends.

What you can’t predict, however, is the response you’ll get from strangers or acquaintances. The worst of which is simply, “I’m sorry.”

“I’m sorry” is something you say to someone when they’ve experienced a loss. Nothing about my child being autistic is a loss to me. The day she was given her diagnosis, we didn’t lose a “normal” child. To the contrary, we gained so much! We gained affirmation that there was a solid reason for her delays. We gained a therapy plan. We gained an incredible support system in the autism community, and most of all, we gained insight and perspective into our child’s beautiful mind.

I won’t be angry with you if you respond with “I’m sorry” because I realize the intention is not a negative one. Most of the time, it’s just a knee-jerk reaction. Perhaps what you were trying to say is that you are sorry we’re dealing with so much, right now. Please, don’t feel that way. It may be overwhelming at times, but I’m not sorry.

When I say the words, “My daughter has autism” and you respond by saying “I’m sorry,” please know it does make me sad. It hurts me that you might think I view my daughter’s diagnosis as a burden. It is not. To the contrary, the countless appointments and therapy sessions over the past several months have been a blessing. They have given me extra time to bond with a pretty amazing person!

Don’t be sorry for me, for there is no reason. In this situation, I am sorry for you. I’m sorry you don’t know her like I do.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.