Opening Up

Email from a friend:

Saw your post on Facebook linking out to your blog and spent the last 30+ minutes devouring the information and went on a roller coaster ride of emotions. In the last 5? 6? 7? years that I’ve known you, you’ve been such a private person when it comes to your family and I almost felt like I was spying …

And a text from a friend:

I saw that you are finally sharing intimacies about raising your son – wow, very proud of you

The matters I am sharing openly on this site are not those that I often talk about in social situations. There are a couple of reasons for this.

Firstly, so much about raising a kid with autism is out of the norm that it’s difficult to talk about any part of it without providing the full context, at a length (and emotional weight) ill-suited for casual chit-chat. When acquaintances discover that I have a nine-year-old son, for example, they often ask things like, “is he excited for the new Star Wars movies?”, and I don’t know where to begin in answering. Do I say that he’s never seen the Star Wars films and, were I to screen them, he would quickly lose interest because he doesn’t follow narratives? Do I say that, so far as I know, he doesn’t fully grasp the concept of “future things”? Do I say that, even if he were excited about the forthcoming films, he wouldn’t know how to express that to me? Maybe it’s just laziness on my part, but I find it easier to simply say something along the lines of, “he’s not really a fan” and leave it at that.

The second reason is harder for me to articulate. Autism is kind of the “concern du jour” right now, and much of the media coverage focuses on how hard it is on the parents. When I talk about my son is social setting, I worry that the listener will call to mind some 20/20 episode in which they emphasized the negative, and assume that is an accurate depiction of my life. There’s an element of machismo in this — I loathe the idea of people “feeling sorry” for me — but more than that, it’s simply incorrect. Raising a child with autism has many challenges, for sure, but so does raising a neurotypical child, and they are not lessened by their ubiquity.

This is really just another manifestation of the “lack of context” issue — lacking the full story, I worry that people will misinterpret my words. But while I don’t often talk about my son in casual situations, I won’t hesitate to bring him to social functions. For instance, this summer he and I met the author of the above email at the beach one Saturday afternoon. My son is an excellent swimmer, but I still need to keep an eye on him while he’s in the water to ensure that he doesn’t range too far. He’s also constantly in motion, which requires constant vigilance. It’s a fair amount of effort, and I’m sure that was obvious to my friend as we paced up and down the sand, making conversation as I kept on eye on my kiddo. But I’m sure it was equally obvious that he brings me so much joy that I feel like I am getting an enormous return on my investment. What would take me an hour to explain become immediately apparent to anyone who actually sees us together.

The purpose of this project is, in part, to address these two issues. But it’s also an acknowledgement that I don’t give people enough credit. My habit of reticence is not helping them or me, and it is something I am working to change.