As you’ve all noticed, no doubt, I’m hardly shy about the fact that the Monster has Autism.
The biggest obstacle I’ve seen is really the fact that Autism is invisible – it’s not like a lot of disabilities where the matter is visible to anyone who can see the affected person. Because the Monster (usually) looks like a happy, healthy boy, folks just assume he’s normal until he does something that’s “not normal”.
And as you can imagine, I’m also not exactly subtle about it at work. My immediate coworkers have gotten accustomed to the fact that there are days where I have to jog off for an IEP meeting, or leave early to cover childcare so he can go to therapy, or things like that. It’s part of my every-day life. (I even have one of those silly puzzle-piece ribbons on the back of my car.)
I do somewhat take it for granted, therefore, that most of the people in my life are aware that the Monster has Autism… so much so that it’s weird when I suddenly realize that someone in my circle doesn’t know.
In the last few weeks at work, my team was transitioned from one division to another, the idea being to properly align us with other units of the company that do similar functions. As such, I suddenly have a new manager who I see infrequently (he’s not local), and while we’ve spoken on a regular basis on the telephone, there’s something about talking in person… and while we were conversing, and I was mentioning about issues at home due to an upcoming business trip, I realized suddenly that he didn’t know. I’d not told him. So of course, I had to back up five steps and actually explain about the situation at home, and why it’s more complicated when I travel, since it’s leaving my wife at home with a NT two year old and a six year old with Autism.
That’s the part I’m not quite used to – watching the wheels spin when I mention it, when I talk about where the Monster is in his development, things like that. People still do have this very skewed view of Autism from what they’ve seen in the media, and it’s still uncomfortable to try to figure out what way to attack the matter to move away from those rather impersonal impressions of the disorder, while also emphasizing that it’s not some major, horrible running disaster at home.
I do feel like I should get some kind of spiel put together for when I have to explain the matter. Something that talks about where his strengths are – his academics, the fact that he’s increasingly interested in socializing with at least selected people – coupled with how he differs from most children, and where his weaknesses lie – fans of any kind, increasing swaths of noise, his food-choosiness. Something so that I can make sure that I cover the same bases as a background without omitting anything. I just need to find a method that ends up at the middle ground so they don’t think I live with Rain Man, and they also don’t think I live with some nightmare.
I don’t know that I explained it well, to be honest, but we’ll see. I hope that at least I got him to where the rest of my coworkers are, that they feel comfortable asking me when they have questions…
I’m in a current state of flux at work now with many new faces. I find exaggerating the illness tends to make people shy away from the topic.
This suits me fine. To be honest I simply find it tiresome even discussing it anymore.
My son is 6. He had a terrible seizure at 1 month old and caused some significant scarring in some brain regions. Of course no one can link this directly to his autism. Ultimately it’s irrelevant. So when people ask me about my son, I tell the he has a brain injury and is autistic. They usually go silent and change the subject which works for me just fine.
I’m spending weeks away from my son right now on business. Watched him have a seizure on FaceTime 2 days ago. How useless that makes me feel.
I do agree that there are days where that feels like the route to go too, at my job.
On the other hand, the major reason I’m up-front about the whole thing, and that I put myself out there, is that my job has been very flexible with me as long as I’ve been honest and open. I also just find that it actually – at my workplace – eliminates the looks I ordinarily get when I bring him to family events. 🙂
That said, though… I can’t even imagine what that must be like, having to interact with all of it at a distance. I’m sorry. 🙁