So, for those of you who aren't living on planet autism, April is Autism Awareness month. And apparently, April 2nd was Autism Awareness Day. Don't get me wrong. I'm all for awareness. The more people who know about the challenges that Oliver faces and who are willing to look on with understanding, the better. But I kind of feel like every day is autism awareness day around here. Every time I go someplace with Oliver, every time we meet someone new, it falls to us to help make that awareness happen. April is no different from May, June or July.
But it just so happened that on April 2nd, I was sitting down for lunch at our kitchen table with a man and a woman whom we had hired to do some carpentry work for us. I knew them both well enough to greet them whenever we saw them at local community spots around town, but I'd never had more than a superficial conversation with either of them. So as they ate their sandwiches, Oliver and I kept them company and chatted. During a brief lull in the conversation, I noticed that the man was looking at Oliver, who was intently laying out a design with a large stash of toothpicks. "So," he said, "Oliver has autism, right? I mean, I know he does, but what does that mean, exactly. I don't know much about autism."
Wow, I thought, how great that he wanted to know more about my son so that he could understand my remarkable little guy. I always find it refreshing when someone asks a question like that head on. But oddly, I found myself at a loss for words. I mean, how do you sum up autism over lunch? Also, Oliver was sitting right there so I knew I had to choose my words carefully. I told him how, for Oliver, autism meant that he struggled to communicate with other people. That he understood just about everything that was being said but that it took him a long time to be able to process his own language in a meaningful way. At that point, the woman described her own struggles as a child with stuttering and how frustrating it was to want to communicate and not be able to get the words out. I also described how Oliver's sensory system receives input in a sometimes extreme way. Both of our guests could describe sounds and textures that really bothered them from time to time or at different periods in their lives.
Since that day I've been thinking about what I want people to know about living with autism. Because it isn't that easy to just say: "I want people to be aware of autism." Autism means different things for different people. What I want people to know depends so very much on the person and the context: stranger, family member, teacher, doctor, policeman. It is fluid. Its complicated. Sometimes I want people to understand his behavior. Sometimes I want people to understand that his behavior is very specifically a response to something that can only be understood in terms of his thought process. And sometimes I want people to understand that despite whatever they are observing, Oliver is not so very different from anyone else.
I'm not so sure I did a stellar job of raising anyone's awareness on Autism Awareness Day. But I was glad to have the conversation. And I was glad to have it with Oliver sitting there at the table. Autism is a word that gets used in our household but I'm not sure yet what Oliver understands about it. The best part of our conversation was that each person at the table related to Oliver's challenges and shared their own stories. This is the kind of awareness that I want to think more about fostering -- in both my own home and my community.
Christine, this is a lovely post. Yes, I like to think of all the ways we are more alike than all the ways in which we are unique. I can relate to your question of "how to sum it up" because I find that to be very hard at times, too.
ReplyDeleteLots of baby steps, right? Changing one mind (or enlightening one mind) at a time.
I think awareness-raising comes in degrees. You certainly did a fine job with the couple in your home. I'm impressed that they not only wanted to know more but were able to find ways they could directly relate to Oliver's challenges; that says a lot about increased awareness! Wish others would follow suit.
ReplyDeleteReally neat post !
ReplyDeleteI am so glad you started posting again !
It's nice to read such a thoughtful, calm piece about Autism Awareness. I thing some of the best awareness activities are the ones that happen on such a small scale.
ReplyDeleteI have been dreaming of writting a peice on autism, keeping some copies in my bag and handing them out if needed. Sadly I too get asked around Egg and it just seems rude!! But that page will never get written, as I have no idea what I want it to say...
ReplyDeleteI agree that everyday is Autism Awareness Day for us too.
ReplyDeleteBeautifully written. Thank you.