Is it Alexithymia, or is it Dissociation Fueled by Trauma?

Emerging research suggests they’re one and the same.

Photo by mwangi gatheca on Unsplash

Since undergoing top surgery, I’ve become far more attuned to my body. I find it easy and natural to pull my chest upward toward the sky, expanding my upper torso and relieving the pressure on my back. With one heavy sigh I can drop my shoulders toward the floor, releasing all of the stiffness a desk job puts on my neck. I can tell when I’m tired, I can tell when I’m hungry. I was not like this before.

For years, feeling at ease was just something my body could not do, because I had so little access to it or awareness of its states. I couldn’t understand how I felt or how those sensations were communicated to others by my body and face. My external form was a mystery to me, and a stiff, inert husk to everybody else.

That’s all changed dramatically. From the moment my surgical binder came off, I could breathe away all the tension and stress in my body, as easily as blowing a loose hair from my face. The way my chest muscles connect to my arms and back suddenly made sense, and I could adjust each of them in relation to one another the moment I felt stiff.

After top surgery, I realized for the first time that when a person walks, their arms and shoulders are meant to move, fluidly, as their body passes through space. Before top surgery, I kept everything above my belly button rigidly soldered in place.

I’m more in touch with my emotions now, too, because physical reality has become comfortable to inhabit. Moods pass through me like morning rainstorms, I catch sight of them and then let them go, welcoming whatever is next on the horizon. I’m energized, and more attuned to others’ energies: I can walk into a crowded dance hall or a bustling street festival with an inviting grin blooming on my face, taking in other’s postures and facial expressions without fear. Being a living animal suddenly seems right.

I used to be so uncoordinated that I was forced into special ed gym. As a child, I could not skip without breaking each of the movements down in painstaking detail: Step. Hop. Step. Hop again. Exactly that slowly. School picture day was a torment because I had no understanding of where my body existed within space, or how to cram my lips into a believable smile.

As an adult I could walk for miles with an open gash on my ankle and not notice until my socks and shoes were soaked with blood. I could spend days fighting off a urinary tract infection and not realize until my urethra seeped pink. I lacked all awareness of my emotions, spewing fury or tears without knowledge of when I’d become bothered. When tragedy or trauma struck, I had no expectation of there being long-term consequences, and was waylaid when there were.

All of these numb detached moments can be described as alexithymia, an inability to recognize or name feelings that roughly 50% of Autistics experience. For a long time I assumed my unawareness of body states was a product of my Autism on a biological or neurological level. I assumed understanding my inner workings was not possible for me, and that I’d be guessing at my emotions and tripping over my feet the rest of my life.

Now I’m not so sure. Because as some emerging research suggests, alexithymia isn’t necessarily a neurological condition. It might just be a sensible reaction to trauma, abuse, and growing up disabled in a society that excludes you.

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A new article in the scientific journal Autism in Adulthood confirms that alexithymia is not unique to Autistics, and can be observed in other groups who, like us, are used to having their internal experiences questioned and doubted.

Brief Report: An Exploration of Alexithymia in Autistic and Nonaustitic Transgender Adults by Aimilia Kallitsounaki and David M. Williams

Study authors Aimilia Kallitsounaki and David M. Williams recruited a total of 78 non-Autistic transgender people and 56 Autistic transgender people into their study, as well as 106 non-Autistic cis people and 107 Autistic cisgender adults.

By having all four groups present in the study, with all possible intersections of Autistic and trans identities, the authors hoped to isolate the effects of both Autism and transgender identity on alexithymia symptoms. In other words, the authors wanted to determine whether Autism and transness each had independent relationships to alexithymia, as well as whether those relationships interacted.

All four groups were asked to complete two well-validated measures of alexithymia: The Toronto Alexithymia Scale-20, and the General Alexithymia Factor Score-8. If you’re curious, you can complete both of these measures by clicking the links.

Both the Toronto Alexithymia Scale and the General Alexithymia Factor scale ask respondents about their awareness of their emotions and their bodily states. Here are some example items:

Two items from the Toronto Alexithymia Scale.

I would have responded to with “Strongly Agree” to both of these items, for much of my life. For a very long time, I was unable to articulate my feelings without journaling about them for hours first. Simple mood words like “jealous” or “sad” did not feel readily accessible to me, and instead I had to express my emotions using elaborate fictional stories or detailed descriptions of the situation I was in.

Mental health providers often found this tendency frustrating, and corrected me by saying that my thoughts are not feelings, which sure didn’t help.

“Thoughts are Not Feelings” is Shitty Psychological Advice

It’s time to stop spreading unscientific, unhelpful mind-body dualism.

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Throughout my life, I’ve routinely struggled to name what my body is feeling or doing in any way others can understand. As a child I had debilitating allergies that I could only communicate by wailing “My nose is warm! My nose is warm!” repeatedly until my mother placed a fan by my face. I’d eat loose bits of paper at my school desk rather than bother anyone by telling them I was hungry. Instead of going to the bathroom, I’d cope with the uneasy need-to-pee feeling by pressing a hand on my groin.

No one knew that I was Autistic back then. Rather than extending sympathy, many adults looked to me as an unsettling, inappropriate kid. By the time I was a grown person, I didn’t trust anyone who held authority over me, so I didn’t bother sharing with doctors or therapists how I truly felt. Even when I was withering away from malnutrition and verging on suicidal, I did not seek help. Complaining about my pain was unthinkable, and so even I could barely recognize that I was unwell.

Gender dysphoria only made matters worse. My body didn’t just confuse me; it was also a burden I didn’t want to understand. My detachment stacked on top of disgust.

This is an all-too-common transgender experience: many of us live with persistent dissociation from our bodies and surroundings. So it makes complete sense that researchers Kallitsounaki and Williams wanted to examine whether alexithymia was an experience common across Autistic and transgender populations, and not just among those of us who are both.

Kallitsounaki and Williams found that transgender participants did in fact report alexithymia symptoms at an elevated rate, compared to their cisgender peers. This effect also held strong when eliminating all Autistic participants from analyses, which indicates that even non-Autistic transgender people are worse at naming and recognizing their feelings than non-Autistic cisgender people are.

The study’s authors concluded from these findings that non-Autistic transgender people appear to exhibit “subclinical” Autistic traits.

“Future studies mighty usefully examine whether alexithymia is a potential “marker” of autistic traits in transgender people who do not meet full criteria for autism,” they write.

To put it another way, they believe the alexithymia that non-Autistic trans people report is still caused by (mild) Autism.

But this conclusion carries with it a faulty and as-yet untested assumption: that alexithymia must be caused by Autism directly, when in reality it could just be a natural consequence of living in a marginalized and othered body. Just because a transgender person struggles to name and recognize their emotions doesn’t necessarily mean they’re Autistic. It could very well be the case that both Autistic people and transgender people struggle to understand our feelings, because we have experienced a lifetime of questioning and invalidation.

And if we look to the broader research literature on alexithymia, we see even more evidence that this might be the case.

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It’s not just Autistic people who have been found by researchers to experience alexithymia. Sufferers of trichotillomania, or compulsive hair-pulling, have repeatedly been found to be alexithymic too.

It seems sensible that people who are not in tune with their emotions might deal with unpleasant feelings by picking at themselves. If they can’t recognize that they’re unhappy, they can’t intentionally reach for other coping methods. The alexithymia doesn’t necessarily cause the hair-pulling in this case; detachment and repetitive self-stimulation are both excellent ways of offload excess stress, as any Autistic person who stims can tell you.

Trichotillomania and emotion regulation: Is symptom severity related to alexithymia?

Previous research on trichotillomania (TTM) has demonstrated an emotion regulation function of hair pulling behavior…

www.sciencedirect.com

Some research also links alexithymia with early exposures to trauma and abuse. People who do not know they are pregnant (also known in the literature as pregnancy-deniers) tend to be alexithymic, for instance. They also tend to be victims of childhood sexual assault. These two things are not unrelated.

We know that when vulnerable people (particularly children) are sexually assaulted, their minds tend to dissociate from that upsetting reality. Their consciousness “floats away” to a point elsewhere in the room, or they pretend the abuse isn’t happening to them or that the world around them is not real. Additional research has also found that alexithymia is associated with early childhood abuse, especially emotional and physical neglect.

It makes sense that a mind that’s well practiced in the art of detachment might stop checking on its internal states entirely. A body that has often been the site of your abuse is one you can’t dwell in comfortably. If you can’t count on your caregiver to provide you with regular nourishment, there’s little reason to make note of your own feelings of hunger. How you feel and what you lack doesn’t matter to anyone else, so why should it matter to you? And if your cries for help or comfort are never heard with sympathy, you may quickly learn not to even recognize sadness within yourself at all.

These findings also dovetail with an observation that Kallitsounaki and Williams make in their paper, but don’t take much time to dwell on: they found that the cisgender men in their sample were significantly more alexithymic than cisgender women. This finding also suggests that there are environmental and social factors that contribute to a person’s awareness of their own emotions — and populations that are discouraged from sharing how they feel are far worse at understanding their feelings as a result.

Growing up, girls are encouraged to understand and communicate about feelings to a far higher degree than boys are. They’re exposed to a larger volume of emotions-focused language than boys from a very young age. Their emotions are more strictly policed as well, so they have to learn to recognize them and cope with them privately. Much of the play girls are encouraged to engage in as children involves tending to pretend babies, customers, patients, or family members. Young girls also show a keen awareness of social expectations regarding gender and emotionality from a very young age.

In countries where such expressions of feeling are normalized, women share eye contact and cry in front of one another more than men do. Women and girls are more likely to seek the help of a therapist — and they’re more actively encouraged to do so. They’re also expected to carry the responsibility of looking after mens’ feelings, and to make sure that their own emotions don’t intrude into a man’s life.

Women aren’t innately more attuned to emotions than men are. They’re simply expected to be more emotionally aware, and given more tools to make emotional recognition and expression possible. Men, on the flip side, are denied the freedom to be openly emotional, and also relieved of the responsibility to look after their own or others’ feelings. This results in them understanding emotions a whole lot less.

If we can’t assume that the alexithymia of men is innate, then we shouldn’t assume it’s innate in Autistics or transgender people either. For just as men are discouraged from openly crying, asking for help, or showing other signs of supposed “weakness,” both transgender people and Autistics are actively discouraged from expressing discomfort or seeking emotional aid for ourselves.

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Photo by Tamanna Rumee on Unsplash

“We are used to ignoring our own bodies,” writes Autistic poet Kate. “ ‘These carrots are too spicy,’ we complained as a child, only to be told ‘no, they were sweet, that the music wasn’t too loud, nobody can hear lights, what
you are experiencing is invalid.’ ”

Kate’s poem, “Scarred” perfectly evokes the emotional and physical policing that so many of us undergo. As Autistic children, we see things that other people do not see: haloes of pain radiating from bright fluorescents, frightening shadows lurking behind closet doors, patterns in our parents’ fights that make us seem at once prescient and paranoid.

Yet we also fail to see what everybody else can easily recognize: the expectation hiding in an innocent question, the leakage of sadness in a simple smile, the lurid inappropriateness of how we are sitting. When we complain about being too hot in a 75° room or choose to starve rather than choke down mushy peas, trusted adults react like we’re crazy. Soon we start believing we’re crazy — and that our bodies and feelings are the reason why we’re in trouble.

Kate writes, “You learn to ignore the ever-present pain
because nothing can be done about it, but then you have a kidney
infection and others get mad at you for not noticing sooner. But why
should you trust your body when it is always wrong?”

I had a terrible pain behind my knee for months before I figured out it was caused by using a standing desk too often. I didn’t know one of my legs was shorter than the other until my mid-twenties, when a negging boyfriend brought it up. I’ve had to self-diagnose all manner of conditions, from anemia to yeast infections to bacterial vaginosis to UTIs to herpes to Autism because my doctors were unable to figure me out. I still struggle to communicate my feelings effectively.

My old therapist would sometimes tilt his head with concern and say that I looked tired, which invariably would make me fume and cry. When I was a child, being told I looked tired wasn’t an expression of concern. It was a command to perk up and screw a happy look onto my face. Any time I got caught sincerely being emotional I knew I was about to be upbraided for it. My dad used to scream at me for crying.

Today, well-meaning allies say they can tell how much happier I am now that I’ve transitioned, because in photos I look so joyful and free. I often hold back from telling them that I deliberately trained myself to smile more convincingly in photos a few years ago. I learned to mimic neurotypical happiness because my real expressions make non-Autistics so uncomfortable. Relating to other people is always a translation, always a performance.

Anti-Autistic bias is not the only reason I’m dissociated from my emotions though. It comes from gender dysphoria too. As a kid I was also corrected for sitting with my legs splayed too far apart, and for crouching and scratching myself in “unladylike” ways. After puberty, I was stuffed into uncomfortable dresses for orchestra performances and job interviews, and makeup was slathered all over my face.

My body became alien to me, but all my life I’d been told the way I was piloting was all wrong. How could I care for my aches and pains when all I’d ever known was that my body wasn’t mine? Why would I ever consider that my feelings mattered, when everybody indicated they were annoying and made no sense?

It’s unbelievable to me that any researcher working today could believe that alexithymia must be inherent to Autism. There are so many external causes of the dissociation that we have yet to rule out. We can’t possibly claim a lack of emotional & bodily awareness as a “symptom” of Autism until Autistic people have been permitted to live free from physical and emotional invalidation for a long while.

We can’t safely assume that alexithymia has biological roots for transgender people, trichotillomania sufferers, or abuse survivors either. It’s just so much more elegant and scientifically sensible to conclude that a variety of types of people cope with trauma and neglect by checking out and ignoring the needs of their bodies.

Like so many other elements of the disabled experience, alexithymia is not caused by a brokenness within the disabled person. Rather, it’s a learned reaction to a lifetime of abuse.

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If alexithymia is learned, that means it can also be unlearned. And experience has taught me that even those of us who are very detached from our feelings can regain and grow our awareness of them.

Here’s what has worked for me so far:

Mindfulness. I know it’s a cliché to recommend mindfulness to disabled people, and I really resisted trying it for a long time. But I have found that carefully and intentionally taking in my surroundings helps me feel that life is lush and abundant, and that I am a meaningful part of nature with instincts I can follow.

To practice mindfulness, I like to visit nature and focus in on tiny details and textures, rubbing bits of bark between my fingers or tossing around stones at the beach. I also like going on long walks with a curious, nonjudgmental mind, or parking on a bench and doing some people-watching. My neighborhood still dazzles me with fresh discoveries on a regular basis.

Journaling & Expressive Writing. My last therapist recommended I try writing about my feelings for a half hour per week, because I struggled to communicate about emotions during our sessions. I resisted, but when I eventually caved in, a wellspring of feeling emerged. I particularly recommend following James Pennebaker’s Writing to Heal method.

Many abused and marginalized people struggle to believe our emotions deserve to exist if they do not make “sense.” By writing about my feelings, I can begin explaining my reactions to myself. Even if a feeling doesn’t doesn’t seem fair, I can at least get it out on the page and acknowledge that it’s happening without facing judgement or hurting anyone with it.

Emotions are morally neutral, there is not one single way to feel that is evil or damaging in the entire world. Writing about my worst or most tormented feelings helps me to identify them and allow them to be.

Describing How Large Emotions Feel, Then Working Backward. When my alexithymia was at its worst, I seldom could identify any emotions at all. I’d insist that I was “fine” for days and then explode into tears that would last hours. I couldn’t address any small upsets in my life, so literally every problem went past my breaking point.

One way that I slowly got a handle on this was by sitting down and articulating to myself exactly how each recognizable big emotion felt. Anxiety was a churning in my belly and a desire to self-harm, anger was a heat coming out of my arms and face, sadness was a seeping, endless gloom.

The more I paid attention to these awful feelings, the better I got at noticing smaller versions of them. I went from being able to notice only white-hot rage to being able to recognize mild annoyance. Now I can tell when I need to leave a situation or change the subject of conversation, and do so long before I explode.

Asking Other People About My Emotions. The people closest to me could always tell I was sad or pissed off long before I could. My body was giving off emotional signals all the time, I was just ignoring them because I viewed them as a threat.

To get better at understanding my feelings, I had to ask my loved ones how emotions and bodily sensations looked on me. My voice gets super serious when I am irritated beyond belief. My shoulders tense when a noise in the room is too loud. And when I am depressed, I really do look more tired, as much as I hate to hear it. But my happiness and love are equally obvious too! Learning how I came across to others helped me to appreciate myself.

I have also practiced expressing my emotions more openly to people. I used to wait until I was at my limit and couldn’t suppress a feeling any longer. Now I challenge myself to state a feeling neutrally as soon as I notice it. “I need to use the restroom.” “This movie is making me sad.” “I don’t want to listen to this triggering story anymore,” are now very easy and natural statements for me to make.

Meditation or Hypnosis. I find conventional meditation to be boring, but thankfully fate has gifted me with a hypnosis fetish. I used to regularly listen to hypnosis files that were designed to stifle my emotions and turn me into an unfeeling robot, for kinky purposes. But once I realized that this was only contributing to my dissociation, I replaced my weird robotification hypnosis files with ones encouraging me to take on a receptive, open, peaceful mindset.

Entering a trance truly does quiet my hyper-analytic, constantly nattering mind. It allows me to access feelings that transcend words or names. My conscious self is so insistent upon always being a strong communicator, on always making sense. Entranced me can just feel and exist. And like most people’s, my entranced self is more open to reframing and change.

Prayer, hypnosis, meditation, and mindfulness are all essentially the same thing, and any of them can be done either while lying still or while walking. So if one of these modalities doesn’t appeal to you, you can always explore another.

Body Scans and Exercise. Simple body scanning exercises help me check in on various body parts and relieve the tension within them (this combines well with hypnosis). Simple exercises such as stretching or isolated muscle work also help me to understand my body and how it feels and moves. When I’m experiencing a noticeable emotion, I also try and check in and identify where that emotion is expressing itself in my body, so I can get better at noticing it and addressing it in the future.

Asking Autistic People About Emotions. Autistic people process differently from other people, and some tools that help neurotypicals understand their emotions won’t really make sense to us. Some of us cackle when we’re anguished, and become stony-faced when we feel at ease. When we’re stressed, we may lose the ability to swallow without even knowing that anything is wrong, and to us, depression may feel like simple blankness.

I’ve learned so much about the diversity of inner experience by asking Autistics how their emotions feel. Where are the feelings located? Which body parts are activated? Which physical symptoms emerge? What behaviors do they engage in when they’re feeling a particular emotion? How does their thinking change when they experience an emotion? What changes to their environment can alter how they feel?

A few weeks ago, I sat down with neurodivergent designer Marta Rose, and shared that I didn’t used to understand that surrounding myself with postcards and photos from friends could make me happy. I truly believed that any act of home decorating was a frivolous practice that only created mess. All last winter, I hated spending time in my bright white office space — then finally I realized installing bright curtains in my favorite shade of teal would bring some life to the room.

For her part, Marta hates minimalism and finds it depressing, so if she’s spending time with a friend who has a minimalist house, she’ll go as far as asking if they can meet up somewhere cozier. A person’s environment can have a massive impact on how they feel. I have learned so much about honoring my feelings and others’ by having conversations like these.

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I am still downright bad at understanding the feelings inside my body sometimes. A lifetime of being questioned and doubted will do that to someone. But now at last I recognize that this was never my fault — and it’s not an innate quality of my disability that I’m doomed to carry with me forever either.

I have trouble listening to a body that was silenced for a very long time. But that’s all begun to change. I am listening to my feelings. I am appreciating how other people feel. And at last, I feel comfortable enough in my post-top-surgery body to want to notice and listen to every beautiful, uncomfortable, informative sensation dwelling inside.