Obviously in our household, communication is important. I mean, that’s true for most households, though—right?
But, like so many other things around here, it’s a bit different for us. Unless you’re new here (and even if you are), that probably doesn’t surprise you.
Obviously, Nolan doesn’t use many words… When he does it’s typically something repeated or scripted.
For example, several years ago he started responding to me when I would thank him for something by saying, “You’re welcome.” It’s not always enunciated clearly, but that’s definitely what he’s saying… I’m sure that’s something he’s heard often enough in his lifetime that the response feels scripted or automatic… And maybe that’s the same sort of mechanism of our brains that has me automatically respond, “And also with you,” when the pastor at church says, “May the Lord be with you.” (And if I’m being honest, it’s so automatic that whenever a Star Wars character says, “May the Force be with you,” I have the same reaction…)
But real communication for us comes in many other forms. We use a communication app on his iPad of course, but we also do a lot of gesturing, guiding and other non-verbal methods.
A few years ago, a teacher of Nolan’s (who he had worked with for a year and a half at this point) let us know that she was surprised by how much he communicated. The only thing keeping my mama bear instincts from blurting, “Bitch, WHAT?” was my overwhelming need to not be kicked out of his annual IEP meeting. I’m sure if anyone was paying attention at that point, they would have seen my face fall… It felt like she’d been working with him for too long at that point to just now be having a realization that communication was happening or that he was trying to initiate it.
That’s kind of been stuck in my craw ever since.
Then a few weeks ago, I posted a question on Reddit in an autism-related forum asking for help with what kinds of language is or isn’t acceptable—especially here. One thing I try to be really conscious of is how our words and actions on this little blog represent and are perceived by folks who live with Autism Spectrum Disorder (ASD).
I had mentioned in the discussion that I often refer to Nolan’s autism as “severe autism” because it saves a lot of time and emotional labor with people who may not be as familiar with ASD… I know it’s not preferred language, though, so I wanted to get some feedback. (I’ll write more about the language we use for talking about autism another time—it’s a subject for its own post…)
Often, when it comes up that Nolan is autistic, the response is something along the lines of, “Oh—my brother’s wife’s cousin’s high school hockey teammate has a brother with autism… He can tell you everything there is to know about NASCAR and the drivers and cars. He’s quirky, but SO SMART!” Heck, sometimes the response is still, “You mean like Rain Man?”
So I explained that I like to use something more descriptive than just the word autism in order to paint a clearer picture from the start—especially with folks who may not be close to someone with autism. One person in the conversation said something along the lines of, “It doesn’t matter to them if you use that kind of terminology or not because they have to want to understand what you’re saying… and most people just don’t care enough about autism to want to understand that there is a difference.”
While I didn’t like that response, I completely understood what they were saying. And that’s been rolling around in my head ever since.
So this weekend, Nolan and I were having one of our nice little moments (which usually happen several times a week) where we just kind of connect with each other… For the two of us, it usually starts with him looking into my eyes. Then he blinks.
And I blink back.
And he blinks again.
And I blink back again.
Then he blinks twice quickly, and I repeat it back at him. Maybe he’ll click his tongue and I’ll click back… But regardless of the sequence of events he does something, and I repeat it back to him. Eventually it morphs into me leading for a while and then back to him leading… It’s exactly like a conversation except there are no words. It’s two people having an exchange of ideas and being present in each other’s lives for a while. And it’s perfect.
Seriously, who could resist those eyes?
But it occurred to me as I was double-blinking back at him that these only happen when I realize he’s staring me down looking for such an exchange. If I wasn’t paying attention, we wouldn’t be having that communication between us.
It reminded me that communication is a two-way street. Unless the statistics have changed since I was in college 20 years ago, 90% of our daily communication is information we are taking in. Only 10% is what we’re putting out into the world. (If I remember the professor correctly, it broke down to roughly 45% listening, 45% reading, 5% writing and 5% speaking.)
It was like an epiphany to me. Like the person on Reddit told me—you have to WANT to listen.
You can talk to me all day, but if I have headphones on to drown you out, we’re not communicating. If I have my glasses off, you can use sign language in my direction all day and I’m not going to know what you’re telling me (plus honestly I know very little sign language… if you’re not telling me to stop or that we’re done, I probably wouldn’t know what you were trying to tell me anyway…) You can fill book after book with writing, but if you lock it away in a drawer and don’t share it, it’s not communication.
Suddenly Nolan’s former teacher made sense.
The communication between Nolan and Teacher wasn’t two-way for a long time—it was 100% Teacher putting information out and 100% Nolan taking information in. Teacher either didn’t know that she was supposed to be listening or didn’t expect there to be anything to listen to… Either way, she thought she was on a one-way street while Nolan was waiting for her to figure out that she was also facing oncoming traffic.
I think a lot of us might find ourselves with oncoming traffic that we didn’t expect if we slow down a bit and pay attention. And especially for people living with ASD (whether they use verbal language or not), it can be a bigger challenge to get their information out into the world in the first place. If we’re not paying attention, we’re not likely to understand it when they do (if we don’t miss it all together…)
I like to think that Nolan taught that teacher almost as much as she taught him during their time together… And I like to think that this is the biggest lesson he had for her. If he had bigger things to teach her, I only hope she was listening.