Living With Alexithymia: I Don’t Know What I’m Feeling, But There’s a Lot of It

“Wow, you’re so self-aware,” said the neuropsychologist during the interview portion of my autism assessment.

“I’m really not,” I replied, and went on to clumsily explain that I was only applying my current understandings to previous periods in my life retroactively, much like adults do when describing their own childhoods. You’d think some people were child savants the way they recount experiences from their early lives, when in reality, they are just revisiting these memories and imbuing them with a maturity and awareness they wouldn’t gain until much later in life.

Much of my life has been lived in reverse. Sure, I am strapped in to the same linear timeline of events as all living creatures, but I generally only grasp the full meaning of events when they are seen in my rear view mirror rather than through my windshield.

It takes a while for me to process and suss out how I have felt in a certain situation, or to understand the ways that others were experiencing events and their own emotions in relation to them. I can have a pretty epic lag time between an event and the realization that I am angry about it, or happy about it, or ambivalent about it.

While I am progressing through a situation in real time, I feel like I’m unwittingly walking right into a giant spiderweb of emotions. Instead of being at a comfortable distance from the spiderweb, where my eyes can focus on it and see it in its full and intact context, I walk headlong into the web and am enveloped in silky strands that are far too close for comfort or inspection. I don’t know what’s all over me, only that something is all over me, until I have the time to peel off each thread, hold it at a comfortable distance and realize, “ah, it’s a spiderweb.”

This is my experience with Alexithymia.

Alexithymia is defined as: “… a personality trait characterized by the subclinical inability to identify and describe emotions experienced by one’s self.” It is common in autistic and otherwise neurodivergent individuals.

This can be, and has been (for me and many others with Alexithymia) quite dangerous. I have been in situations where the correct emotional response would have been something like fear or suspicion, which would have alerted me to actual danger and the need to protect or remove myself.

I failed, on several occasions, to sense danger, and subsequently failed to take appropriate actions to remove myself or protect myself. I learned the hard way. Frankly, I am lucky that I only walked away with trauma rather than being wheeled out in a body bag.

It may be understandable why, then, I became so invested in trying to understand the emotions I have felt in the past to better recognize them moving forward in the future. My apparent “self-awareness” has never been an inherent, well-developed awareness – it has been an overcompensation for a glaring blind spot which was making me vulnerable to actual trauma.

Over the years, I have put a lot of hard work into learning how my own emotions manifest, but I don’t always get it right, even now. I’ve put a lot of hard work into learning how emotions in others manifest and this still can be exceptionally difficult for me. Ask those close to me, who have to explain to me a thousand times a day what certain facial expressions or tones of voice mean.

This is actually a large part of what makes face to face social interactions exceptionally difficult for me.

Not only do I struggle with alexithymia, I also struggle with aphasia (difficulty finding words), selective mutism, and Auditory Processing Disorder.

And not only is the conversation moving too fast for me to understand how it is making me feel (or to figure out how the other person is feeling) it is also moving too fast for me to even be able to process the spoken words.

Taken altogether, having a face to face verbal conversation feels like being caught in a crossfire in a war zone. I literally go into “fight or flight” mode in order to survive the firefight, except there’s more to the “fight or flight” than just “fight” or “flight.”

The full panorama of trauma responses includes fight, flight, fawn or freeze.

Here’s the thing: I am human. Just like any human, I am an interdependent being. This is heresy in the individualistic society we currently inhabit, but it’s true.

I don’t care how independent you think you are, if you’re not a hermit living an entirely self-sufficient existence without the company or help of other human beings, you’re actually interdependent. And that’s not a bad thing! Our interdependence as a species is part of what has made us the most successful hominid ever to walk the Earth. It’s a successful survival strategy.

It’s hard-wired into all of us to seek out relationships to ensure our survival. Is it any wonder that my fight-flight-fawn-freeze response kicks into high gear when I find myself in a social interaction which is well above my ability to perform in it, yet I still am hardwired to establish human connections to better ensure my survival?

Fight isn’t a smart survival strategy if connection is the goal. Nor is flight, which would be running in the opposite direction of human connection, as the hermit does. Freeze isn’t too advantageous, either. What’s left? Fawn.

Have you ever heard of “masking”? It is essentially any time that someone suppresses their natural emotions or traits and emulates more acceptable emotions or traits. It is common in several populations of individuals, such as physicians, and, notably, the autistic community. And what is masking at its most basic? It is fawning.

Per this Healthline article: “… “fawning,” offers an alternate path to safety. You escape harm, in short, by learning to please the person threatening you and keep them happy.”

When expressing your authentic characteristics or emotions threatens the deeply ingrained need for human connection, when that connection and those relationships ensure the survival of the individual, the best coping strategy is to fawn, to mask, to appease people by presenting them with a more socially acceptable persona, to ensure that one is accepted.

As a trauma response, this isn’t a fully conscious decision anymore than flinching when someone throws a punch at you is a decision. It is not a premeditated, calculated charade or choice to be disingenuous. It is a subconscious coping strategy to overcome a perceived threat to survival.

I would love to stop masking, but that’s like trying to overcome the automatic reflex to flinch when a fist is flying towards your face. I would love to not switch into an actor playing a part in every interaction I ever have. I would love to stop reading from the script of socially acceptable neurotypical lines I have gleaned from careful study of others engaged in conversation both in real life and in cinema. I don’t know if that’s ever going to happen.

Because what would that look like? That would look like me not carefully curating my facial expressions and letting my face remain neutral, which many people find disconcerting and off-putting. That would mean answering someone perhaps several minutes after they’ve said something to me and I’ve had time to process their words, let them sink in, figure out how I feel about what they’ve said, compose an authentic reply, and be able to actually find and form the words in response.

I already know how this would go. I already know it would make others intensely uncomfortable, which, perhaps to the surprise (or chagrin) of people who think autistic people are robotic individuals incapable of basic human empathy or compassion, I don’t like doing and regularly offer myself up in place of others to shoulder the intense discomfort. All to preserve the social connections I’m hardwired to seek to ensure my continued survival.

When we talk about features of autism, we tend to talk about them like they’re in a vacuum. While it’s helpful to select each thread of a spiderweb out to inspect it and better understand it, it’s also useless to only inspect one thread outside of the context of the entire web of which it is a part. Alexithymia doesn’t exist in a vacuum; it is one thread of many making up the complex and interconnected web of traits and tendencies common to so many autistic people.

Alexithymia influences and is influenced by Auditory Processing Disorder. Alexithymia influences and is influenced by aphasia and selective mutism. Alexithymia influences and is influenced by masking. Alexithymia even plays into why I rewatch shows over and over, analyzing conversations and facial expressions and body language, like a person trying to learn Spanish watching shows in which only Spanish is spoken. Alexithymia is also at the root of why I thoroughly enjoy what I call “peripheral socializing” such as when I am at an outdoor music festival, people watching and observing others’ interactions. These things all interrelate perhaps a great deal more than clinicians and researchers may realize.

And I know all of this not because I’m naturally insightful when it comes to my inner workings or emotionally self-aware; I know this because I’ve had a vested interest in figuring out why the hell I wasn’t operating as expected, when the failure to do so was directly putting me in dangerous situations or, at the very least, threatening to endanger valuable connections with other people, also perceived as my brain as a threat to my survival. After all, who fights harder than an individual facing their own mortality?

You know what else Alexithymia influences? Me, writing this blog in the first place. I was just sitting here tonight feeling… God knows what. Whatever it is, it doesn’t feel good, but I have no idea which emotion (or emotions?) I am feeling. Writing helps me tease out all the strands enveloping me and reconstruct them in their context as an intact, interrelated web. As much as I write this blog for the benefit of others, I also write it as a way to process and learn about my own emotions.

While living with Alexithymia does present its challenges, it also provides me with the unique opportunity to not take emotions for granted, to come to know them perhaps more intimately than if I never had to put any effort into deciphering them. I am able to draw conclusions and realize things about myself and about others that I wouldn’t have learned any other way. I have become fairly emotionally literate after almost four decades of being a clueless but determined student of emotions.

I am not emotionless. In fact, if anything, I have come to believe that I experience emotions in a deeper and more intense way than most other people seem to. It’s like falling in love for the first time (and yes, I have fallen in love, and no, at first, I didn’t know what I was feeling was “love.” I was only able to describe the physical sensations it made me feel in my body, and the person I had fallen in love with had to tell me, “yeah, that’s love!”) When you’re not expecting to fall in love, it smacks you twenty times harder than if you were expecting it. When you have no time to put up your defenses, Cupid’s arrow can pierce you all the deeper.

Just because those with Alexithymia don’t always know and can’t always communicate the names of our emotions, that doesn’t mean that we don’t feel them, or that we are incapable of experiencing empathy (once we finally figure out that it is called for.) We are actually quite emotional people. We certainly are not robots. We are humans, experiencing the same world as you, in very distinct but equally valid ways, striving to acquire and maintain the same valuable human connections to ensure our survival.