Awareness is good, but we need action, too

Published 1:47 am Wednesday, April 3, 2019

Today is the day to wear blue. I am cold this morning and as I survey my closet, there is nothing blue that looks comfortably warm. Instead, I grab my favorite gray pants and oversized snuggly shirt.

As I stand at the mirror brushing my hair, I feel bad that there is no blue on my person. So, I find a pair of gray socks that have a blue stripe on top.

“There,” I say to myself, “I’m wearing something blue on my body.”

Oh, the reason for wearing blue is April 2 is World Autism Day, part of World Autism Month. I’m never sure what to call this designated day and month. Is it a celebration? That doesn’t feel quite right. Maybe a day and month for awareness is a better description.

Of course, autism awareness goes on daily at our house. My 27-year-old daughter has autism so it’s part of our world. She’s not dressing in blue today because she has enough awareness without blue clothing.

I have mixed emotions about this month. While I’m glad it brings attention to autism and its challenges, some parts of this “celebration” make me a little uncomfortable.

It’s the “success” stories that are hard to take sometimes. These are the stories shared a million times on social media. They are the ones spotlighted in the feel-good portion of the nightly news.

I’ve read a lot of them. In fact, when my daughter was younger, I devoured every one I could find. There is a whole collection of books in my house dedicated to moms who “cured” their kids, and to people with autism who accomplished genius things.

Don’t get me wrong, I’m happy for and celebrate every one of those successes — the people with autism who made it to college and the guy with autism who is now a public speaker and author. That is wonderful, and that is not my daughter’s story.

In fact, it’s not the story for many of the one in 68 children diagnosed with autism every year. Yes, some will get early intervention services and perhaps grow into adults who are able to live independently. Heck, some do so well you’d hardly know autism is part of their lives.

As I said, that is not my daughter’s story. No, she is one of the people with autism who will need daily assistance for the rest of her life, something that is stressful if I allow myself to think about it too much. Some day, it won’t be me around to give that daily assistance and that is a stressful thought.

There are times I hear or read one of these autism success stories and question whether or not I did enough for my child when she was younger. If we’d seen another doctor, gone to another speech therapist, tried another medicine, etc. would her story be different?

When I’m thinking rationally, I know we did and continue to do everything we can to help her and make the challenges she faces easier. When I’m not being quite so rational, I let the questions get the best of me.

So yes, I want autism awareness, but I also want acknowledgement that this spectrum disorder hits people in many different ways. It’s fine, great in fact, to celebrate the talents and successes of those more publicly visible folks with autism.

However, the world also needs awareness of the very real and intense challenges that come with an autism diagnosis. We need attention for not only those newly diagnosed with autism, but also for the thousands of people with autism who are adults and the thousands more who will become adults in the next few years.

I’m glad people wear blue today if it results in a hopeful future for my daughter and others like her. Sadly, if action doesn’t accompany awareness, it does about as much to make the future for people with autism better as does that blue stripe on my sock.

Nancy Blackmon is a former newspaper editor and a yoga teacher.