It’s hard to describe an experience to somebody who has little to compare it against. What would it be like to sense magnetic fields, or see the polarisation of light? How would it feel to be a cat?
You might speculate but there is no way to know. All you can do is imagine, drawing parallels with things you’ve seen or felt yourself. And it’s the same when somebody neurotypical tries to understand the experience of being autistic.
The same applies going the other way, of course. An autistic person like myself can never experience being neurotypical either. There’s even a name for this: the Double Empathy problem.
The thing is, while most of us autistics are all too aware that we experience the world differently to neurotypicals and that neurotypical assumptions about us can sometimes be wildly inaccurate, few neurotypicals have the equivalent insight.
This leads to misinterpretation of autistic behaviour when it’s viewed through that neurotypical lens. When all you see of something is what’s on the outside, you have to guess what’s going on inside based on what you’re familiar with. In this case, assuming that the causes or triggers are the same for autistics as for NTs.
We autistics are a minority neurotype. The consequence of this is that while we encounter NTs frequently, they don’t meet us nearly as often and don’t have the same opportunity to become familiar with our differences. We aren’t well understood, and that can lead to fear.
Filling that gap in understanding is so important, but there’s a communication barrier. How can we describe our internal experience in a way that neurotypical people can relate to without making it seem like a minor variation? That’s how we end up with misunderstandings like, “We’re all a bit autistic.”
I don’t have the answer. I don’t even know if there is an answer but I keep searching. There certainly is such a thing as an autistic experience because so many of us can relate to each other in ways that don’t happen between us and neurotypical people.
I’m autistic: I know how that feels. I can describe how it feels in ways that other autistics can relate to, but there’s always a frustrating gap in understanding with a neurotypical audience. The shorthand that works fine with others who share my neurotype loses meaning with those who have a different neurology.
My belief is that science alone–psychology, neuroscience and so on–probably won’t arrive at an answer any time soon. It’s going to require fresh approaches that break down the traditional barriers between disciplines to approach it from new directions.
Because communication lies at the heart of the problem it will undoubtedly need to involve those who specialise in those fields. Not just linguistics but all manner of communication: the domain of artists.
An over-reliance on words and repetition of established patterns makes new directions and new shapes of thought much more difficult: a poet or painter can capture and convey the feeling of an experience in a transcendent way.
Think of a simple experience: perhaps eating a chocolate. While the mechanics are important–body heat melting it, the action of chewing and swallowing, the workings of the taste buds and digestive system–they don’t tell you how it feels. There’s a whole level of description missing.
Bridging the communication gap will take a combined effort, a multi-disciplinary effort. New thinking is needed to break out from the confining paradigms we find ourselves with right now.
6 thoughts on “Don’t Let Me Be Misunderstood – #Autistic December 6/31”
“New thinking is needed to break out from the confining paradigms we find ourselves with right now.”
That includes getting rid of behaviorist methods for both NTs and autistics alike. Behaviorist theory should be a thing of the past.
LikeLiked by 2 people
Also, this quote “a poet or painter can capture and convey the feeling of an experience in a transcendent way.” I could never figure out why it was something I shared with an NT struck him in such a hugely deep way, and it was because I wasn’t trying to communicate like an NT. I simply shared an art reference we both knew, and he instantly got what I meant.
LikeLiked by 1 person
The double empathy problem is also maddening sometimes. Ex, when I say “I look at everything” I mean everything – the details, the noises, the emotions, the individual letters, the words those letters make, the shapes that are formed, EVERYTHING. But an NT who’s only known his world doesn’t really grasp what I mean.
LikeLiked by 3 people
Another very articulate essay, Alex.
I met a new Doctor at the Veteran’s Administration today. I told her upfront that I was Dx’d as Asperger’s, in 1999, at the age of 53. I also told her that my previous Doctors had misunderstood what that meant, and that’s what had ruined my relationships with them. Some seemed afraid, others were condescending, treated me as though I were developmentally disabled. I tried to explain to her that Asperger’s was just a different wiring in the brain, as is being left-handed, or gay, or even the brain structure difference of gender. I don’t know if I really connected with my explanation though. Didn’t get a lot of feedback, but maybe because of time constraints. I’ll keep working on it.
I wish she could read this, it might help to explain.
LikeLiked by 3 people
What a great post. As an artist I do try to convey my experiences of being on the spectrum. For me it works and I can connect to it, but art has its own misconceptions and is open to interpretation so it can’t and perhaps shouldn’t be so literally interpreted. That said it can do a lot like you said. I completely agree though that art can be a great way to broaden people’s perspectives on certain issues. I also have clinical depression and struggled to describe exactly how it felt and then I heard a song by a band called Sonic Youth and it immediately felt like my depression. It felt like a direct musical interpretation of that feeling. It wasn’t the lyrics as such but the music itself.
LikeLiked by 4 people