Is autistic behavior always communication?

Senior editor of Thinking Person's Guide to Autism and mother of an autistic teenaged son, Shannon Des Roches Rosa, questions the mantra "behavior is communication". When are autistic behaviors communication, and when are they not?

“Behavior is communication” is a well-worn mantra in autism and assisted communication communities. I’ve argued for the concept myself, as have many other people I respect. But I’m no longer convinced this statement is always true, especially for autistic people who require support with sensory, motor, or processing challenges in addition to communication. People like my teenaged son, Leo.

My conceptual shift came about through listening to autistic writers and advocates who urge human-centric autism approaches. Since we are all humans, and since the way non-autistic people behave is not always social or about communication, it follows that autistic behavior can also have non-social origins.

Since non-autistic behavior isn't always about communication, autistic behavior isn't always either.

Shannon Des Roches Rosa

There are still specific aspects of autistic behavior that non-autistic parents and professionals struggle to understand. This may be why some professionals cling so tightly to interpreting what every autistic action is “saying” to us. When we non-autistics ascribe communication intent to every autistic behavior, then we have a framework, which can make things simpler – for us. But it doesn’t always make things easier for the autistic people in our lives, not if they need understanding rather than two-way engagement.

When are autistic behaviors specifically not communication?

To quote Dr. Clarissa Kripke, who both supports patients with developmental disabilities, and is the parent of an autistic teen, “I’ve learned from autistic people that all behavior isn’t necessarily communication — it can be a problem with impulsivity or motor control, and also sometimes people might be doing something because they have an obsessive/compulsive need to do it - they know it’s wrong, but they can’t stop themselves. Or they don’t have the body control, as in ‘I know you want me to go over there, and I’m trying to go over there, but I can’t get my body to initiate the movement - I’m not being defiant.’”

Sometimes behavior isn’t communication because sparing the energy to consider others is simply not possible at the time. Autistic meltdowns (explosive or implosive) or shutdowns are not about other people (unless they triggered the meltdown), and not about communication. Meltdowns and shutdowns happen when an autistic person is overwhelmed to the point of dysregulation, and very much needs NOT to communicate or interact, until they are able to reestablish equilibrium. There is not much a bystander can do during such episodes, except be patient and wait the episode out, or - in the case of explosive meltdowns - do what they can to ensure the autistic person and any bystanders don’t get hurt.

Other self-contained autistic “behaviors,” like stimming, are not usually about communication. They are typically about self-regulation, sensory seeking, or self-expression (unless the other person is holding, wearing, or blocking the way to a stim-worthy object). Autistic writers and YouTubers talk about stimming frequently, about it being a manifestation of pure happiness, or joy. And sometimes of distress, or dysregulation. But stimming is about pleasing or processing on one’s own, and not generally about communication – not with non-autistic people anyhow.

When can behaviors be attempts to communicate?

On the flip side, it’s important to be careful about recognizing when autistic people’s actions truly are communication. Sometimes legitimate attempts to connect with others are misinterpreted as purely problematic “behaviors” and people focus on stopping them rather than understanding what the person is trying to say. The “oh, it’s just them being autistic,” can be a worrisome take, especially if the autistic person in question is sick, in pain, or frustrated. This is something my own son has experienced.

Young boy with mother
Shannon with her son

I wasn’t considering a medical explanation when Leo’s sleep cycle recently became irregular, as autistic people are prone to sleep dysregulation. It would have been easy enough to write off Leo’s insomnia and resulting demonstrations to us of his distress as an “autistic thing.” But due to a family history, we determined what was really happening: poor Leo had a bad case of acid reflux and was not sleeping well because every time he tried to lie down, the considerable pain from his heartburn became even worse. Instead of sleep hygiene, we gave him over-the-counter antacids, on his pediatrician’s advice. And he started sleeping again.

So if it’s not always reasonable to expect behavior to be communication, what is reasonable?

In my opinion, while it’s important for those who parent or work with autistic people to do their best to understand why autistic people do what they do, parents and professionals need to focus less on trying to interpret every autistic behavior as an attempt to reach other people, and more on ensuring those same autistic people have the tools they need to communicate in the way that makes the most sense for them.

While communication methods can vary dramatically from autistic person to autistic person, there are some factors to keep in mind:

  • Have faith that everyone – everyone! – is able to communicate if they have access to appropriate communication supports. But be careful; having this very necessary mindset is not the same thing as saying every autistic person with a communication difference is some sort of hidden genius. Some are, some aren’t. Others have an intellectual disability - and all of those scenarios are OK.
  • Make sure supported autistic communicators have all the words they need – for their culture, for their age - including curse words, slang, flirting terms, all body parts, and more. You can’t use words you can’t access, and that can really suck in social scenarios - especially with peers.
  • Ensure all autistic people who need supported, or augmentative and alternative communication (AAC) have access to AAC that suits them. These options don't have to be high tech, though such options (iPads and other tablet-based systems) are more available than they ever have been. This is one of the biggest areas of need, honestly. Far too many schools have neither the equipment or even the basic materials, not to mention the professionals with the necessary expertise, to support atypical communicators. This needs to change. We need to push for this to change.

And here’s where to start: By reminding ourselves that while behavior is not always communication, everyone can communicate. Have faith in your autistic loved one or client, and proceed from there.