Intro: On Twitter, realsocialskills posted a tweet that led to a conversation about issues with the phrase “behavior is communication,” which is very popular among the autism acceptance movement. Quickly, I found myself frustrated by Twitter’s limited length format which makes it difficult to discuss nuanced issues, so I decided to try to turn the thoughts into a blog post. Please understand that I don’t intend this as a unilateral condemnation of the phrase “behavior is communication” – many autistic advocates use it themselves to good purpose and I genuinely do support the sentiment behind it – but rather I’m trying to explain why the phrase has made me increasingly uncomfortable as time goes on.
I’ve had issues with the phrase “behavior is communication” for a while, and I give realsocialskills (who also has a website/Tumblr, which you should check out, by the way!) credit for inspiring me to look at why this phrase has increasingly given me pause recently.
My view is kind of complex and nuanced as reality often is, so I will do my best to explain where I’m coming from. I’m not against the sentiment expressed by “behavior is communication,” but I find the phrase itself a little troublesome, and I’m going to try to explain why. I’ll start with the positives of the phrase: Why it’s useful and why it expresses something that should be held important. Then I’ll look into my issues with the phrase, and at the end maybe try to suggest something that would resolve it.
The idea behind “behavior is communication” is a powerful one: It is the idea that disabled people – even severely disabled people without the ability to reliably communicate through language – have perspectives, thoughts, and desires all their own and have the right to have those around them understand and respect it. The sentiment is that a person never does anything for “no reason” – an autistic kid who head-bangs doesn’t bang their head on things for no reason, there is a reason for that action and if you can find it and stop the cause, you might be able to make them comfortable enough that they don’t have to bang their head any more. The sentiment is also that there is almost no case where someone has “no way” of communicating distress, discomfort, etc – even if they cannot use language or AAC, they can emote and act in ways to try to get their message across. I want to be perfectly clear: I completely support this sentiment. I agree with it entirely.
Behavior genuinely does offer important insight into what’s going on in a person’s head, especially if that person is unable to express it to you (either due to not having sufficient emotional self-awareness, or due to language issues, or due to not having figured out what’s wrong themselves, or, or, or… there are lots of reasons why someone might be unable – or even unwilling! – to reveal what’s going on inside to others. And being unwilling isn’t necessarily a bad thing but that’s fodder for another post). If I am acting as I often do when I am anxious, odds are fairly good that if you respond in a way designed to reduce my anxiety, my mood will improve, even if I don’t know why or how or even that I am anxious (this happens to me sometimes – emotional self-awareness is not really my strong suit). As my mood improves, I will find it less necessary to do anxiety-relieving stims. This is the general idea behind “behavior is communication.”
And sometimes behavior is communication. Let’s go hypothetical mode that comes to mind because I’ve had it happen quite often in recent weeks: Let’s say I’m hit with a really severe coughing fit because I’m sick and have asthma. I can’t talk at all because I’m coughing so hard, and my face is turning colors and I am generally acting very distressed in my breathing (sitting up very straight, bracing myself against something so I can get a better posture for breathing and coughing, face screwing up in my I-can’t-breathe facial expression, etc). If I can tell this is just a normal illness coughing fit and not a dangerous asthma one, I might nod or give you a thumbs-up sign or wave at you with my hands or something until the fit passes to try to communicate with you that I am not in danger. I can’t talk or use AAC right now, but thumbs-up: I am okay, this will pass. I am uncomfortable and distressed, but not in danger. Please don’t worry.
But, and here is where my issues the phrase begin, sometimes behavior is not communication. Returning to the same coughing fit: I am not trying to communicate with you my distress at my breathing when I cough. I am, to be a bit crude, trying to clear the gunk from my lungs. The purpose of coughing is not communication, it’s to preserve breathing ability. Not all behavior is communication. Likewise, I flutter my hands when I am happy. Is that communication? No. It’s just something I do when I’m happy, it’s how my body emotes. Can you use it as input for your communication with me? Yes. But that doesn’t mean my natural body movements are, themselves, communication. I would flutter my hands just as much if I was alone in a room by myself. The hand flutter is not designed to share meaning or thoughts with you. Sometimes behavior is just behavior: a cough is a cough, a hand flutter is a hand flutter, a fidget is a fidget. It’s not intended to communicate anything with you. There is a reason for it, but that reason is not communication.
That does not mean that non-communicative behaviors should be ignored – if I’m coughing so hard that my face turns purple and I can’t talk, please do check on me! Or if my hands are fluttering in my happy way, it certainly won’t harm anything for you to take that as a cue that I’m happy.
What it means is that not everything I do – or any other person with a disability does – centers around you and trying to impart information to you and trying to get you in particular to do something. And this one of my problems with the phrase “behavior is communication”: it is very self-centered. By re-framing someone’s actions as “trying to communicate something to me,” you are basically writing their entire existence to center on you – your actions, your thoughts, your feelings. And the fact is, someone else’s life does not center on you. It centers on them, and that’s okay, just like it’s okay that your life centers on you.
Another issue is that by assuming that someone is trying to communicate something to you with a behavior, you can blindfold yourself to what is actually going on. Say a person is very upset and crying and melting down and biting their hands. If you assume that biting their hands is attempted communication with you, you might think “maybe her teeth hurt, and that’s why she’s so upset!” or “maybe his hand is sore, and that’s why he’s biting it!” or any number of things centered around the person’s mouth and hands. By assuming it’s a purposeful behavior designed to communicate information, you’ve obscured what’s actually going on: Maybe the person bites their hands when they feel ashamed and is melting down because they accidentally broke something special in another room.
Or, lets say there is a person who has a particular hand fidget before they start working on something involving fine motor coordination. If you assume that the hand fidget is about communicating to you, you might think maybe they’re expressing eagerness for the activity, or maybe think that they’re bored and fidgeting because they don’t want to do it anymore. Or, maybe, you think their hand is uncomfortable and start wasting energy for more sensory-friendly stuff to work with when the current stuff is just fine. But maybe the person has sensory and fine-motor issues, and the hand-fidget lets them know where their fingers are (this one is pulled from me – I have a particular hand fidget that I do before I start fine motor work, and I need to do it so that I know where my fingers are). By assuming it’s all about you, you’ve again missed the point of the behavior.
A third example, one I think I’ve used another incident related to this in a blog post before: When I was a kid, I had a thing where having a sore throat was interpreted by my body as an itchy throat and the only way to make the itchy feeling go away was to do a sort of throat-clearing noise. It was a loud and very annoying noise. One day, I had a really bad throat (it was strep throat, turned out) and I was clearing my throat all the time. Literally, at the height I was probably making the throat clearing noise every ten seconds or so. Imagine that for like eight hours straight. My family was understandably aggravated. My parents got really annoyed – what is it, what do you want, stop making that noise, do you want my attention for something, go to your room if you’re not going to stop making that noise. By assuming it was about them, they missed the fact that I was sick. We spent the whole day fighting over the noise and why I couldn’t stop making it, as my throat got worse and worse and I made the noise more and more. Finally, my mom offered me a sore throat lozenge. I’m not really sure why she did – maybe she thought it would shut up the damn noise if I was sucking on something. Once the lozenge took effect, I realized what the problem had been and told her that my throat felt a lot better now. “Now?” – cue my throat getting looked at and oh, geez, we feel really bad now because your throat is covered in blisters, it must really hurt, no wonder you were acting funny all day!
My point with these examples is that by taking a self-centered assumption, you’re setting yourself up to misunderstand and misinterpret non-communicative behavior. If someone is doing something, it might not be about you.
My last issue with “behavior is communication” is that assuming that behavior is intended as communication neglects the disabled person’s agency, by assuming that everything they do centers on someone else. You are essentially assuming that the disabled person has no life outside of you, and there’s no reason why they would want to do something, unless it applies to you. I’m sure I don’t have to explain why I think that’s a problem, but I will just to belabor the point a bit: People with disabilities are people, with rich and varied lives, both internally and externally. The vast majority of what I – or anyone else in this world – does is things that do not center on one particular person.
My point is this: Behavior can be communication, but isn’t always, and to assume it is always communication is disrespectful to the person you’re dealing with, self-centered, and setting yourself up for misunderstandings. A better way to look at it, rather than the absolute “behavior is communication,” is to think “behavior always has a reason.” That’s an absolute I can get behind – because behavior does always have a reason, even if the reason is really quite simple, like me petting the fleecy blanket because I like the feeling of fleece.