Tag Archives | pride

Stage Fright

My 13-year-old son Alex stands in the orange stage lights of his school’s spring talent show. He’s helping his physical therapist hold up a big sign that says either CHA CHA or DANCE. I don’t have a chance to tell which the spinning signs says before Alex vanishes stage left in the Speedy Gonzalas whirl.

“Maybe he’ll be part of your road crew next year,” I’ll tell his teacher later, after the PT escorts him back to his seat.

“He was cocooning himself in the curtain,” the PT tells me, “and we figured, ‘Not today.’” She sounds likes she’s trying to comfort me about this, and I’m trying to decide if I need to be comforted.

Alex’s school holds a talent show every year – at least they have since he got old enough to attend 6th grade. Before that, every spring they’d have a carnival of games and music and face painting and stuff like that. Alex used to run away there, too. Last year in the talent show, he drummed. Bongos. I sat there watching his face and its Matt Dillon brows and downturned W of a mouth as his para sat too close to him for it to be normal and he drummed and looked out at the lights.

What does anyone see when they look out at the lights in an audience, their stomach a knot? What did Alex, with autism, see?

The bongos came up again last summer, when Alex and I were walking home from Target where we’d bought milk and we passed a bodega store at E. 108th Street and Lexington Avenue, where a man was pounding a bongo with skill. As if waiting for Alex, a bongo sat empty next to the man, and Alex sat down. To this day, I’m not sure if anyone in the crowd cheering the man or Alex and the bongos or both understood that Alex has a problem. They cheered and told me there was no problem. And there wasn’t.

But the show this year. It started a half an hour late, which seemed like a long time to ask kids with special needs to sit, considering that some had filed in early. I kept craning for Alex’s orange hoody. When I spotted it, I assumed that under the hoody Alex was wearing the tie-dyed white T that a few weeks ago, in the “communication book” home, we were told was the uniform of his performance.

Alex’s was one of the last classes to file in. He saw me in my seat. I asked his teacher if she thought it’d be better for him if I moved. She didn’t say one way or the other. I moved anyway, and Alex kept looking for me until he found me, and I waved. “You’re on first,” I heard someone say to Alex’s class, and they went out a door. When Alex appeared in the orange lights a moment later, he was still wearing the hoody. Where was the tie-dyed T, with all the preparation behind it?

I watched him on stage; I wasn’t proud but I wasn’t ashamed, either, as I saw him bend down and bolt.


Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such asAutism-Asperger’s DigestAutism Spectrum News, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

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Do you Love Autism or Hate Autism?

I have talked to quite a few people with Autism (usually more specifically Aspergers) that really love having Autism and the benefits that come with it. Although, I’ve also talked to others who absolutely detest Autism in all shapes and forms. These are usually people that do not have Autism but do have a loved one with very severe Autism, more times than not, it’s their child.

I don’t want to generalize too much, it’s just an observation. However, love and hate are two pretty intense emotions and when focused on a single subject, this can usually lead to animosity or hostility.

The more I got to thinking about it, the more I started to get hostile myself, not at either group of people but at the need to push their love or hate onto each other.

It ultimately resulted in me tweeting this: “Autism is not your sword to wield as a weapon nor for you to fall on. Love it or hate it, don’t tell others how to feel.”

I feel it’s important to share our accomplishments and our disappointments, our pride and our sorrow… but it’s very hard for someone that hates everything to do with Autism to watch someone with Autism themselves go on and on about how much they love it and how wonderful it is. Conversely, it’s very hard for someone who is very proud of their Autism to go on speaking very harshly about how life destroying it is.

I would like to suggest that you either accept their stance as their circumstances are very different from yours or politely ignore/unfollow/unfriend/leave that person and continue on with what you’re doing and let them continue on with what they’re doing.

In a perfect world, we all support each other. But sometimes we just can’t… and that’s ok. But we really don’t need to replace support with fighting. Love it or hate it, we’re all on the same side, I think.

I invite you to share, but not fight…  do you love Autism or do you hate Autism?

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