Afterword: Real Look Autism

From Chicken Soup for the Soul: Raising Kids on the Spectrum

Afterword
Real Look Autism

If we are to achieve a richer culture, we must weave one in which each diverse human gift will find a fitting place.

~Margaret Meade

For more than twenty years, I was a local TV news anchor in Baltimore. Here are some of the facts as I would have read them on the six o’clock news:

Good evening, I’m Mary Beth Marsden and I’m married with three children. Our youngest and only girl was diagnosed with autism spectrum disorder at age three and a half. She’s now a fifth grader in a public school, included in regular classes with support. She is strong-willed, innocent, and wildly creative. She’s slow at processing information, struggles with social dynamics, and sometimes her emotions get the better of her. Those are the facts . . . but here’s my story.

When I left the small screen I wanted to do “something” in the world of autism. After talking it over with some friends, I developed an idea for a reality show. I called it On The Spec. For months, I pitched the idea to production houses and a few well-known cable networks until I finally got a nibble, from a channel you probably know well. The On The Spec concept, along with some episode ideas, made it to a producers meeting where they were looking at possibilities for new programming. It didn’t take long to get an e-mail that read “Thanks but no thanks.” What? I didn’t get it. In my mind, autism was everywhere. The mainstream media couldn’t get enough. Autism stories were frequently in the news and each year it seemed the CDC was raising the prevalence numbers. Why wouldn’t a show about autism be popular?

I called the producer and he was kind enough to call me back. He gave me some standard line about how this wasn’t their focus and they were moving in another direction . . . blah blah. I finally said, “Look, off the record, can you give me a little more than that?”

He said, “Fine. Off the record, we find the whole subject matter too depressing.”

For a second I didn’t say anything except maybe a very low and soft “wow.” I then thanked him and told him very sincerely, “On the record, I just want you to know that the people I know touched by autism are some of the warmest, most empathetic, funny, loving people I know, and they would never want you to look at them and feel depressed.” He said he understood. Then I said, “What if I found an autistic hoarder?” I couldn’t help myself.

Now I make my own videos. They are videos of children on the spectrum who are making progress with the help of certain therapies or strategies. The videos are not seen by millions of people, but many thousands. They are not appearing on cable, but on YouTube. They have a purpose and they are filled with hope.

I wasn’t always so optimistic about autism . . . in fact I think while I made sure my daughter was getting help, I never fully accepted the diagnosis. Maybe I was afraid if I acknowledged it by name it would be permanent. There were times I didn’t know what to call it or how to talk about it. (We still don’t spend time with labels when we are talking with our daughter and for now she is fine with that.) But, as time passed, something changed. I began embracing this huge and dynamic autism spectrum. I started owning it and I’ll tell you — it freed me. I feel empowered now when I talk with others about autism. I feel eager to share my story if it will help someone else and I am always open to another person’s point of view. This is an amazing community of people who have different approaches and circumstances. We have, in some cases, wide-ranging viewpoints about research and treatment. But I believe if we listen and respect each other we are “one” and as “one” we have a huge voice.

Awareness is not a slogan, but a necessity if we are to help create communities that will welcome and include our children. If others see us as “depressing” we need to fix that, and I believe education, understanding and acceptance is the key.

And I still think autism would make for a great reality show.

~Mary Beth Marsden

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