I Have a Message for All My Son’s Labels

Dear Down syndrome and autism,

I love learning new things.

When I found out about you, I took on the challenge of learning everything I could about each of you.

We’ve been on this journey together for 21 years. First, I read everything I could find on Down syndrome. Some things didn’t seem to fit, but then the autism was uncovered. So I started learning about autism, but that didn’t quite fit, either. Then I found out Down syndrome and autism could exist together, and it became a whole new ball game.

Somewhere along the way while I was busy learning all these things, my younger son was calmly and steadily teaching me something much more important. I learned that you, Down syndrome and autism, are just labels. Now, labels are practical and helpful: hot, cold, danger, stop, walk, don’t walk. There’s nothing wrong with labels — for things. But when it comes to people, labels don’t fit.

That’s what my son was teaching me about you, Down syndrome and autism. You’re nice, helpful labels that point me toward research, advocacy and finding appropriate services for my son. But, no offense — you’re limited. You can’t describe my son. His name is Joe. He’s a unique person. Down syndrome and autism describe him in the same limited way blue eyes and 5’3” describe him. That description helps you pick him out in a crowd, but it can’t tell you who he is.


But I do want to say thank you for all I’ve learned about you both. Learning has made me a better advocate. When I talk to new parents meeting you for the first time, I always share what my nonverbal son told me: “Look beyond the label. See me.”

Sincerely yours,

Barbara Carson

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