USA Bobsled and Skeleton
Autism Awareness Month
By Darrin Steele, USBSF CEO
San Diego, 2007. My youngest of three, Darrin Khan, was holding something breakable, although I can’t remember what. He wasn’t quite two yet, so I instructed him to put it down and redirected him to one of his toys. He ran right back to it, so I repeated the steps. Since he had two older sisters, I knew the drill – or so I thought. After the third time redirecting him, I saw something different. He went back a fourth time, but this time I didn’t see defiance, I saw panic. I saw fear. It was so obvious to me that he was genuinely frightened that I let him go.
I realize now that it was the first evidence I can remember of his autism. I learned later that his behavior was consistent for some with the disorder. Given the ramifications of the disorder, it’s understandable that a fair bit of denial is common. When a friend of ours with a background in speech therapy encouraged us to get him checked out due to his speech delay, we thought she was being dramatic. When his first speech therapist told us that he had autism, we found a new therapist. But by the time Children’s Hospital in Denver made the diagnosis official in 2009; it was just a formality. In many ways it was a relief. Not much happens in that world without the label and we were anxious to move forward. The diagnosis gave us a place to start and it was the beginning of a journey that won’t end.
It’s easy to focus on the challenges and paint a picture worthy of sympathy, but that wouldn’t be honest. Yes, it can be hard, but anything worthwhile in life is. This boy is a character and he’s the brightest light in our family. He has made me a better dad and he honestly touches the lives of those around him in ways I could never imagine. The world looks at him and sees limitations, but he looks at the world and sees possibilities.
He decided to be a bird a few months ago, so he made a bed on top of the refrigerator because he didn’t have a tree for his nest. We discovered he could do a standing backflip because he was acting out a movie scene and that’s what the actor did. When I couldn’t take him to the museum, he made a sign that said ‘Darrin’s Museum’ and taped it to the front of our house. Then he made museum displays in the living room window. This boy, who shows perseverance, humor, creativity, joy, and compassion, can melt the hearts of those around him, but struggles to find his place in the world. And that’s the irony in which we, and families like ours, live.
I think it’s time to change that.
April is Autism Awareness month. Awareness campaigns are only effective if they lead to action. It’s in that spirit that I offer three simple actions people can take when they are ready to move beyond awareness.
1. Embrace an attitude of acceptance for who they are rather than who we would like them to be. Kids with autism get reminded everyday of their weaknesses. We are starting to see some terrific programs emerging, but they are few and far between. All too often these kids are sent the message that they don’t belong. They don’t belong in their school, they don’t belong in the store, they don’t belong in the restaurant – and if they want to belong they need to be different. Everyone wants to be accepted for who they are and these kids are no different. If you get the chance to spend time with any of these great kids, let them be themselves. They will feel it even if you don’t say it and it will mean more than you can imagine. You’ll be glad you did.
The second part of this is patience. When you see that screaming kid with the bad mother, take a breath and make sure it is what you think it is. It might be a kid with autism who has taken in so much stimulation that he’s lost control and is probably scared to death. That mom knows it would be easier to leave him at home, but she goes out anyway. She endures the embarrassment, the anxiety, the looks of disapproval, and the occasional comments because she loves her child, and this is just part of the deal.
2. Give up the R word. I know – it’s just an expression. But every time we hear someone say “retard” or “retarded” we are reminded of how the world sees our children. The reality is that the term ‘mental retardation’ is still used and is often a required classification for badly needed resource eligibility. It doesn’t matter that you would never say it directly to kids with developmental disabilities; the word will still find them. If adults say it, kids will say it. It’s so common that most people separate the intent from the people the word is associated with. But let’s call it what it is; a comparison to people like my son. There has not been a time during the past five years when I’ve heard that word and not seen the face of my boy. I imagine him asking me, “What is retarded?” and wonder how I’ll handle it. I worry that it has already happened but he doesn’t have the language skills to tell me. I accept that families like ours are overly sensitive about this issue. If you knew how much time we spend thinking about how to protect these sweet, vulnerable kids, you would understand why. I can protect him from a lot of things at this age, but I can’t protect him from that word.
3. Light it up Blue. This is an easy one. The month of April is Autism Awareness Month. A blue porch light at your house does a couple things. It helps spread awareness, which really is the first step to educating people about the fastest growing developmental disability in the nation. Maybe people will see the blue light and ask some questions or do some research. The second thing it does is it sends a really cool message of solidarity. It’s very common for families to eventually give up the fight and isolate themselves from the world. The blue light reminds them that they aren’t alone and there are people out there who understand.
An awareness campaign isn’t going to change the world. But it can make a difference in the life of a person with autism and for that person; the world just got better.
Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid. - Albert Einstein