Why Awareness Matters

Tuesday, April 24, 2012 View Comments Autism Speaks

Phillip Hain is the West Region Director of Autism Speaks and the parent of a child with autism

April 2, 2012 marked the 5th annual World Autism Awareness Day..

I specifically said “marked” because past experience has shown that using the words “celebrated,” “commemorated,” or even “observed” would potentially stir up an entirely different set of issues. I’ve seen some parents write that autism should be celebrated because many of our kids have extraordinary gifts and talents. Then along comes another parent reminding everyone (as if we don’t already know) that other kids are non verbal, self-injurious, and medically sick so there is absolutely nothing to celebrate about autism.

And even something that seems benign about the basic need to continue raising awareness brings criticism. Parents lament that they are overwhelmed by autism and overloaded with awareness. The subtext is that we live it every day so we don’t need more awareness. I read somewhere that April should be renamed Autism Action Month, with the complaint that awareness wasn’t enough. I agree that awareness isn’t enough, but no one ever said that awareness is where we should stop. Quite the opposite—awareness is the beginning and leads to action. But if people don’t know or care about an issue, why would they do anything about it? Awareness is not reminding ourselves but carrying the message outside our sometimes protected circle and educating those not affected by autism.

For everyone who thinks that there’s enough awareness and an abundance of compassion, I ask you to read this letter. The cowardly author(s) addressed the envelope in crayon to avoid identifying themselves and sent it directly to one family’s home.

The parents have now had to involve school officials and the local police. Rather than backing down or being intimidated, the response was, “They picked the wrong mama bear to mess with.” This mom then decided to do something and run in one of Autism Speaks’ Team Up events to help raise money and awareness so that other families will not have to endure this type of bullying. Talk about awareness leading to action!

Earlier this year Autism Speaks awarded a Family Service Community Grant to an organization which helps children with autism who are bullied and harassed. Many people don’t realize that children affected with an autism spectrum disorder are the victims of abuse at a rate of up to 12 times higher than their peers without autism. I don’t think it’s a stretch to believe that some kids who bully other kids affected by autism might possibly learn this type of behavior from parents who are intolerant. One example is the letter you just read.

Last month I met a young man with Asperger Syndrome who goes around his community in Northern California and speaks to schools and other community groups about his experience living with autism. He doesn’t see autism as a negative but simply part of who he is. Of course it presents challenges but he deals with them in a manner that works for him.

I have an adult son with Asperger Syndrome so these issues are very real for me. In middle school he was the target of another student who took advantage of his kind disposition. Andrew is now enrolled in community college, takes public transportation and navigates himself around our town independently. But that does not mean I’m not worried that he might say the wrong thing or get himself inadvertently in a situation where someone doesn’t understand him. I don’t think that feeling will ever go away.

My personal method of raising awareness every day is wearing my blue puzzle piece pin. Well-meaning but unknowing strangers often playfully ask me do I like puzzles, if I am puzzled or have I found the other puzzle pieces. I smile and tell them it’s a symbol of autism awareness, and this generally results in a broad smile and favorable response. I see this as a small sign of progress. Years ago when you said “autism” it was necessary to explain what it is and even then people looked a bit confused. Now, even if people don’t completely understand autism, at least they have heard of it. And with the new statistic of 1 in 88 children being affected, often they have a personal experience with it through a friend or relative.

On a recent trip while boarding a plane, the flight attendant noticed my pin and said, “I have a son with Asperger Syndrome,” which led to a brief chat during which we exchanged parental experiences. When she later came through the aisle I gave her my pin and she promptly placed it on her service apron. Now many thousands of travelers will be more aware.

No one should feel reluctant or apologetic about raising awareness.