Suffering from alexithymia

This article is in response to the question, “Is it possible to suffer from alexithymia but not suffer from autism?”

Although about 40–65% of autistic people have alexithymia,^[1]The validity of using self-reports to assess emotion regulation abilities in adults with autism spectrum disorder (Berthoz & Hill, 2005)^[2]Brief report: cognitive processing of own emotions in individuals with autistic spectrum disorder and in their relatives (Hill et al., 2004) you don’t have to be autistic to have alexithymia.^[3]Prevalence of alexithymia and its association with sociodemographic variables in the general population of finland Author links open overlay panel (Salminen et al., 1999) I will explain who tends to have alexithymia, as well as the why and how.

But before I get there, let me say a bit about suffering and the significance of subjective experience. Because, although alexithymia is indeed correlated with negative feelings, I’m not sure ‘suffering’ is necessarily an appropriate way to describe the experience of it.

And ‘suffering from autism’ is not how I would characterize my own experience of being autistic, but I will put that aside for now.

What is alexithymia?

To understand why I object to describing alexithymia as suffering, yet at the same time it does lead to negative emotions, I have to explain a bit about what alexithymia is and what it does.

Broadly speaking, alexithymia is defined by the following seven factors:

1. Difficulty identifying feelings.
2. Difficulty distinguishing between feelings and the bodily sensations of emotional arousal.
3. Difficulty describing feelings to other people.
4. Difficulty identifying facial expressions.
5. Difficulty identifying/remembering faces.
6. Constricted imaginal processes, as evidenced by a scarcity of fantasies.
7. A stimulus-bound, externally oriented cognitive style.

Number 1–5 are the cognitive aspects of alexithymia, while the latter two are the affective aspects. Alexithymia in autistic people generally only affects the cognitive domain. What these cognitive aspects have in common is the diminished accessibility of emotions and feelings.

So what might cause our emotions to become inaccessible to ourselves?

Protection mechanism

The simple answer is trauma or emotional distress. When you experience a lot of negative emotions, your brain has a tendency to rewire so that the subjective experience of those emotions is diminished. In other words, you seemingly feel less.

Because, if you don’t experience emotions as intensely, you will be less fazed by negative experiences. So in a sense, alexithymia is a protection mechanism. Research shows it’s a defense to highly emotional events.^[4]Towards a classification of alexithymia: primary, secondary and organic (Messina et al., 2014) So it’s the brain’s way of alleviating your suffering by disrupting your awareness of it.

This is why—in a sense—it’s curious to describe someone as ‘suffering’ from alexithymia, because it’s exactly what protects them from experiencing that suffering. The very core of the condition is a lesser ability to access such negative emotions.

Emotional input, unemotional output

Having said that though, I must say a bit about what it means to have less access to our emotional experiences. It does not mean that the person with alexithymia has no emotions. What tends to happen is that the emotions play out in the subconscious and don’t reach consciousness, or at least not fully. The person with alexithymia is generally not aware of this. Or, not fully, in any case.

When my alexithymia was at its highest during my teens and my early 20s, if you were to ask me how I’m doing or feeling, my response would generally be “I’m fine.” Even though I experienced plenty of stress, I truly had no clue what emotions were running underneath. And that’s exactly the point of the condition. Because if I WOULD have had full access to my emotions, I would probably have ended my life. I say that because I came close to doing it twice. That’s pretty intense for someone who is perpetually “fine”, isn’t it?

Even still, I was truly surprised when in the last years I learned that my mother feared for my life a lot, and tried to shield me from things she felt would not have been good to know at the time. Truly surprised. Because from my perspective, I really was sort of fine. I mean, I knew I wasn’t necessarily feeling awesome. I went to various therapists because I acknowledged I needed help. But at the same time, I couldn’t even make up my mind about whether I was even depressed or not.

Subjective experience

But as I implied, just because I reported I was fine didn’t mean I was not suffering. But the subjective experience of that suffering was at odds with what other people were probably seeing. It was only in hindsight that I could understand and appreciate just how much I suffered.

Actually, that’s not even entirely true. I mean, it’s certainly true that I gained insights into my prior experiences, and in hindsight could make better sense of my behaviors. But let’s not forget that while my alexithymia has diminished, I still am definitely alexithymic. And what this means with respect to contextualizing prior experiences is that I am not always successful at it. Because remember, that protection mechanism is still active. It makes me less able to explore the emotional foundations of past experiences. Or maybe less willing to do it. With proper guidance, I CAN access those emotions. Somatic therapy and EMDR can be powerful tools.

But the thing is, I generally don’t do it. My motivation is that emotions bore me, but I think that is just an intellectualization of my fears. By calling emotions boring, I have an excuse not to explore them. I want to focus on more interesting things instead. And the more restraint I show in trying to access my emotions, the more likely I am to sustain my alexithymia.

Alexithymia is what protects me emotionally, but it’s also what keeps me emotionally stuck.

Suffering from alexithymia

And this is probably the real suffering of alexithymia. It’s not necessarily that your subjective experience of things is too much to endure, or even that there is a very conscious experience of suffering. The real issue of alexithymia in my experience is that you have trouble orienting yourself emotionally; you don’t know where you are in your emotional and spiritual journey, or what to do to make progress. And you probably don’t want to, either. Yes, you want to do better, but you can’t emotionally grasp what you actually need. I would often devalue the very things that could have helped me make progress.

For example, for the longest time, I profoundly misunderstood concepts such as mindfulness and meditation, and deemed them either unworthy to explore or they “didn’t work for me”. I genuinely believed that, but as it turns out, they did work for me, after I tried them more seriously and with proper guidance. But I had to be willing and emotionally ready to start exploring and understanding the very tools that have proven useful in identifying and processing our emotions.

And to give another example, I grew up believing that emotions necessarily lead to hysteria and irrational behavior, and are best avoided. I believed that emotions are in opposition to logic. I failed to understand that when emotions are used optimally, they actually inform our very logic, rather than undermining it. These kinds of beliefs alone were enough to lock me in place for more than a decade.

And think about what that does to your life, to not make much emotional progress for an extended period of time. Even if I did not suffer subjectively, my resistance to emotions probably made me emotionally underdeveloped and underequipped to properly deal with life. It caused me to say I’m totally fine being on my own forever. Why even explore relationships, find a partner, and build a life together? And being cut off from my own emotions also meant being cut off from other people’s emotions. It’s not that I did not care about others, but at the same time, my empathy was not always consistently operational.

Mind you, alexithymia also had its benefits. It made me hardened—able to endure things others could not. Research also shows highly alexithymic people show less distress when seeing others in pain.^[5]Alexithymia decreases altruism in real social decisions (FeldmannHall, Dalgleish & Mobbs, 2012) I saw others respond emotionally to each other in ways that just left me confused as to why emotions seemed so infectious to others. I saw other people cry for each other about things that left me unfazed.

But you know, sometimes it’s good to cry for or with others. It can help you process your own feelings, and/or foster connections with others. I experienced little of that.

I was just confused that most people seemed to keep me at a distance. Not because I wasn’t nice, but because people found me hard to approach. They found me intellectually intimidating, and emotionally shielded. I think the latter mediated the former. Because, if I were emotionally more available and expressive, I suspect my intellect would be perceived as a charm rather than something intimidating.

But to be honest, I keep most people at a distance myself. I can get overwhelmed by the emotions involved in a deep relationship, and I get scared of the idea of connecting with others. I want a connection, but my fear also prevents me from pursuing it.

All of this is what causes suffering in alexithymia. So to summarize and bring up a few additional points:

• It makes your emotions inaccessible, so you don’t get properly informed about yourself and how you relate to the world.
• Prolonged inaccessibility of emotions can lead to emotional underdevelopment, which means you will have to catch up later in life.
• Being cut off from your emotions can cause fluctuations in your empathy, which can be confusing to yourself and others. That in turn can result in inadvertently hurting others, or cause problems with your sense of self. Research shows that alexithymia leads to both lower cognitive and affective empathy.^[6]The Feeling of Me Feeling for You: Interoception, Alexithymia and Empathy in Autism (Mul et al., 2018) And low empathy in turn has been correlated with a sense of loneliness.^[7]Trait empathy as a predictor of individual differences in perceived loneliness (Beadle et al., 2012)
• Low sociability makes you less likely to connect with others and foster relationships. This in turn can lead to loneliness, or—considering you may be cut off from that experience—simply being alone. Research shows that alexithymia leads to fewer social interactions, and thus more social isolation.^[8]Alexithymia decreases altruism in real social decisions (FeldmannHall, Dalgleish & Mobbs, 2012)
• Not being able to access your own emotions means the experience of negative emotions can be less intense, but the flip side is also that positive emotions are more shallow and more short-lived.
• In my experience, because negative emotions could endure while the positive ones are short-lived, this can bring an emotional imbalance in your life. So even if negative emotions aren’t experienced deeply and fully, it can seem like the predominant experience, while positive emotions are fleeting.
• When you don’t access, identify, and process your feelings, they tend to get stored in the body in a process called somatization. This can have real physical effects, such as bodily pain and inflammation. I’ve had temporary states of severe somatization where I felt like I aged 40 years, and was suddenly walking like an old man due to pain in my back and exhaustion.
• When you are not aware of your emotions and your trauma, they tend to come out in your interactions with others, and are often expressed in ways that are not conducive to others, yourself, and your relationships with people. Knowledge is power. And although we are not necessarily ready to be aware of some of our traumas—knowledge here should not be forced or it can be destructive rather than empowering—in recent years I have come to realize that awareness is the key to start dealing with your challenges. If you are not aware, you cannot exert much control over your life, and everything will seemingly come out of nowhere. Like Carl Jung said:^[9]Quote by C.G. Jung | Goodreads

Until you make the unconscious conscious,
it will direct your life and you will call it fate.

Who gets alexithymia?

Now that I’ve shared more about what alexithymia is and what it does, you may also have an inkling of what it correlates with, and the kind of demographics that alexithymia is applicable to.

• Men tend to score higher in alexithymia (12.8%) than women (8.2%).^[10]Depression is strongly associated with alexithymia in the general population (Honkalampi et al., 2000)
• Alexithymia has a close relationship with depression in the general population.^[11]Depression is strongly associated with alexithymia in the general population (Honkalampi et al., 2000)
• Elevated levels of alexithymia are seen in a number of disorders such as anorexia nervosa, substance abuse, and PTSD.^[12]Alexithymia from the Social Neuroscience Perspective (Berthoz, Pouga & Wessa, 2011)
• Alexithymia among prisoners (in China) was found to be 30%. The high prevalence of alexithymia among prisoners is linked with their level of education, the experience of childhood trauma, and symptoms of negative emotions.^[13]Prevalence and associated factors of alexithymia among adult prisoners in China: a cross-sectional study
• Alexithymia is also associated with heavy drinking,^[14]Coping with Inner Feelings and Stress: Heavy Alcohol Use in the Context of Alexithymia and the prevalence of alexithymia among alcoholics is very high (45–67%).^[15]Alexithymia and alcohol use disorders: A critical review^[16]Alexithymia and temperament and character model of personality in alcohol‐dependent Turkish men^[17]Criterion validity of Bermond-vorst Alexithymia Questionnaire-20 Form B: A study of 63 alcoholic subjects
• People who are at high risk of developing psychosis were found to be higher in cognitive alexithymia, but significantly low in affective alexithymia.^[18]Cognitive Alexithymia Is Associated with the Degree of Risk for Psychosis (Van der Velde et al., 2015)
• The prevalence of alexithymia among autistic people was found to be 40–65%,^[19]The validity of using self-reports to assess emotion regulation abilities in adults with autism spectrum disorder^[20]Brief report: cognitive processing of own emotions in individuals with autistic spectrum disorder and in their relatives with some studies indicating a prevalence as high as 70%.^[21]Measuring the effects of alexithymia on perception of emotional vocalizations in autistic spectrum disorder and typical development

The prevalence of alexithymia among the general population is 4.89–13%.^[22]Prevalence of alexithymia and its association with sociodemographic variables in the general population of Finland (Salminen et al., 1999)^[23]Age is strongly associated with alexithymia in the general population (Matilla et al., 2006)^[24]Investigating alexithymia in autism: A systematic review and meta-analysis (Kinnaird, Stewart & Tchanturia, 2019) Virtually anyone with emotional sensitivities and trauma can develop alexithymia. The only personality or neurotype that common sense would say cannot develop alexithymia is (primary) psychopathy. But even then, there is research that suggests that sociopathy is BPD with alexithymia (but do distinguish it from primary psychopathy),^[25]Emotional Dysregulation and Borderline Personality Disorder: Explaining the Link Between Secondary Psychopathy and Alexithymia (Ridings, 2011) which suggests alexithymia may play a role in at least some parts of the psychopathic spectrum as well.

But while alexithymia is present in the general, non-autistic population, as you can see from the statistics above, it’s highly prevalent among autistics and a few other minority groups. But what I do find quite interesting is that most of the conditions listed above are correlated with each other. Depression, trauma, PTSD, eating disorders, substance abuse, and stress-induced psychosis are all quite common among autistics. You can read more about the connection with PTSD here:

The link between autism & PTSD

I might explore those relationships more deeply and comprehensively in a future post. For now, I think it suffices to say that since alexithymia acts as a protection mechanism, it should be no surprise that it’s a common feature among those that have endured trauma and hardship—irrespective of whether or not they are autistic.

Minority groups may be inherently more vulnerable, and certain neurological conditions such as autism are likely also predisposed. But it seems that alexithymia is a coping mechanism that develops in many that have a need for it in order to survive.