To the People Who Call Me Brave for Sharing My Asperger’s Diagnosis


At the beginning of every class, there’s always a bit of an icebreaker. Sometimes it’s a specific question like, “What’s your favorite movie?” (“The Cabin in the Woods,” incidentally) or “Who’s your favorite band?” (This can get awkward when you only listen to musical cast albums.) Or it can just be an open-ended “introduce yourself” type of thing.

Whatever the case, I usually mention the fact that I have Asperger’s syndromeMost people just smile and nod and file it away in the back of their mind. Some people, though, will ask questions or mention a relative or friend they have with the same diagnosis.

One reaction I hadn’t received until fairly recently is one that initially baffled me, and it still continues to throw me off. Some people, when I share my diagnosis, step in and congratulate me on being brave enough to disclose that information.

So for those of you who say that to me, I want you to know it’s not wrong to think or say that. I’m not saying you’re misguided or offending me in any way. Sadly, we do live in a world where there’s still a serious stigma surrounding mental illnesses and disabilities. That being said, it’s never crossed my mind to keep my diagnosis a secret. I mean, there’s always the chance someone will judge me for it or try to argue with me or give me a lecture about how Asperger’s is a completely made-up diagnosis. But one thing I’ve learned over the years is those people simply aren’t worth my time. I’d rather identify them right away, so I don’t have to waste precious energy trying to argue with a brick wall.

There’s also the fact that, for years, I wasn’t diagnosed. I was about 16 when I finally received my diagnosis, and up until that point, I’d simply been labeled as a bad kid. I spoke over teachers, I talked back, I threw “tantrums,” which were actually meltdowns.

For years teachers had called me a bad kid, and it came to the point that I thought I was a bad kid. Those teachers were smarter than me, after all. If talking back made me a bad kid, even though I had no concept of what it was or how I was doing it, then I was a bad kid.

For years I believed this, and it wasn’t until my diagnosis that I finally had something to say back to those teachers. Even if the worst years were behind me, it comforted me to know I really wasn’t a bad kid, and hopefully, no one would see me as that again. I was just a kid who was confused. I didn’t understand the concept of talking back, and I didn’t know why teachers got mad when I questioned them. My tantrums, which were always scarier for me than anyone else, weren’t a result of me being spoiled or being a brat. It was the result of my being overwhelmed. It’s something I could’ve told people if I could’ve formed the proper words at the time.

I never had a chance to tell my teachers or former classmates about my diagnosis. I never had the chance to explain myself in an articulate way. Now I finally have that ability. I can tell people, right off the bat, that I have Asperger’s.

Sarah smiling

When I first started writing this, I thought I’d describe it as a disclaimer. But now, I realize that’s not right. “Disclaimer” has a bit of a negative connotation. It’s more of a prologue than anything else. It’s the part of my story that needs to be understood before you can understand the rest of it. Because even though my disability doesn’t define me, I help define it.

The true definition of Asperger’s comes from the people who have it. Their lives, their stories and their personalities all shape what we know about Asperger’s. So, yes, I will share my diagnosis, but it’s not because I’m brave. I share because even if you know what Asperger’s is, know someone with it or even have the diagnosis yourself, you don’t have the complete picture. I don’t have the complete picture. No one does. But we can slowly piece it together, and if I can add one more piece to someone’s picture, then it’s worth sharing it, even if they judge me for it.

I don’t see it as being brave; I see it as being me. I’m doing a service for you by expanding your definitions and understanding, if only a little.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

To the Woman Who Taught Me About Being a Special Needs Mom

Dear Mom, I tell you all the time how much I appreciate you. I do what I can to show you that gratitude as often as possible, yet I always wish I could do more.  You are the one whose guidance and love taught me to love myself the way I so comfortably do, and [...]

When My Son Told Me Why He Threw Up During Speech Therapy

My son and I have the best talks while driving around town. His first sentence came out in this car. I don’t know why he can carry on a conversation so much better on four wheels, but maybe the car has nothing to do with it. Maybe it’s the fact that he’s back there and I’m up [...]

17 Tips to Make Thanksgiving More Comfortable for Kids With Autism

Thanksgiving is a holiday that involves a lot of planning, but for many families, it goes far beyond turkey and hosting. For children on the autism spectrum, Turkey Day can be a chaotic and overwhelming day, so we asked parents in our community if they have any special tricks to make it more comfortable for their kids. Here’s what they had [...]

To People on the Autism Spectrum Who Struggle With Holiday Gatherings

I love sports. I grew up playing soccer, basketball, football, and for a brief moment, I even ran track. Some of the greatest lessons I learned didn’t happen on the basketball court or the football field — they happened on the track. A few months ago, in an effort to explain to someone how autism spectrum [...]