It's Not a Perfect World, but I'll Take It by Jennifer Rose

Author:Jennifer Rose
Language: eng
Format: epub
Publisher: Skyhorse Publishing
Published: 2016-03-10T16:00:00+00:00

LESSON 24

Autism work isn’t always glamorous

IN OCTOBER 2012, THE MEDIA was very excited to share the story of Katy Perry singing with autistic musician Jodi DiPiazza. A lot of people, including Jon Stewart, were also thrilled. But not my mom. She pointed out that my sister is also an autistic singer, but she doesn’t get attention like that. I thought, “Well, Katy Perry’s music will draw people, and she’s helping this girl feel good about herself, what’s wrong with that?” The point is, very few autistic kids are as lucky as Jodi is. Most kids, let alone autistic kids, don’t get to be on TV with their favorite pop stars.

In April 2014, I published an article about this issue in the online newspaper Age of Autism. Even though it’s wonderful for autistic kids to shine with celebrities, I wrote, most of them will not be that lucky. Some can’t speak, and others wander from home. The comments I got for the article were overwhelmingly positive, from a man who said I did a wonderful job of highlighting everyday autism to a girl who said I spoke for so many autistic kids.

Later that year, my dad was reading a story online about how the more “real-life” autism work isn’t taken seriously. There was even a little box included with the story that said, “If you want stuff sugar-coated, I advise that you visit a bakery.” One of the commentators was a mom who was angry at the fact that only talented autistic kids got public attention.

I talked about it with Dad, and he explained, “Well, Jenny, if we only do photo ops with celebrities, we accomplish nothing.” While it’s great to celebrate the talents of autistic kids (more on that in the next lesson), you also have to deal with the hard issue of autism itself and its less pretty features.

That’s not to say autism work can’t be fun and glamorous. Just ask Alexis Wineman, Jenny McCarthy, or Jacqueline Laurita. It just can’t be like that all the time. It’s like chocolate—I like it, but I can’t eat it at every meal! And come to think of it, even unglamorous autism work can be fun and beautiful in its own little way. For example, I didn’t get very famous through the fantasy story I wrote with the boy from my school, but we had a good time writing it. And it meant so much to him.

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