Do you have difficulty identifying or verbalizing your feelings? If so, reading this may change your life.
Alexithymia is characterized by being unable to effectively verbalize feelings, but it’s not because the person doesn’t want to, it’s because they don’t know how to.
I was one of those people who didn’t know how to verbalize my feelings and emotions but it wasn’t because I couldn’t, it’s because I was never taught how. Some just need to be taught how to identify and verbalize their internal experiences in a way that makes sense to them. Sure, that’s much easier said than done, but it may just be the most important internal work needed for neurodivergent folks, in general, and it seems to be the least talked about. Before we dive deeper into the spectrum that is Alexithymia, let me elaborate on why I think learning to identify our feelings and emotions and develop the skills needed to verbalize our internal experiences is possibly the most important part of human development and for some of you reading this, it may even save your life.
I was diagnosed with Autism Spectrum Disorder at the age of 34 and to this day I lovingly describe it as ‘the bomb that was dropped on me’. Processing my late-diagnosis was complex and at times dark, but over time I felt like my life had finally come into focus. It felt like I had freedom and my own internal prison at the same time. I had (and still have) a lot of internal work to do but the game-changer for me was being able to make sense of all of the questions I had pondered after countless experiences that I couldn’t make sense of. I was now able to identify and process the many strange, unusual, odd, and bizarre events that had occurred, and were essentially the result of me not quite “getting” what was going on around me. Sure, that realization sucks, but that is exactly how you begin to “get it”. You embrace and accept your reality. (… and if you were wondering, yes, I had many sleepless nights tossing and turning while not being able to stop thinking about a random conversation that happened 10–20 years ago.) I found that as I continued to resolve the pain from past experiences and why things so often “went wrong” for me, it wasn’t long before I realized that if I had developed the skills to identify and verbalize my internal experiences and struggles at a much earlier age, I may not have had the harmfully turbulent years that lead up to my late-diagnosis, but how exactly would learning those skills earlier have kept me from harm? Let me elaborate.
As most do, I reached that existential moment in my late-diagnosis journey where I wondered, “Where exactly does my personality end and my neurotype begin?” You see, when you are late-diagnosed your life starts in the middle, or for some who have had more trauma while getting to the root of who they are, it can feel like starting at the end and working your way backward in your growth. Basically, we are internal “Benjamin Buttons” and trust me, that is CONFUSING. Even at very young ages it feels like you are an outsider swimming against the raging currents of “normalcy” and I hate to break it to you, but that never goes away. We always know we’re different, trust me no one lets that fact go, but the hard part is knowing exactly why we’re different. I can’t even tell you how many times I’ve heard “What’s wrong with you?” and after hearing that or that I’m crazy or dramatic I began to see myself as the problem, too, but who wouldn’t? Once you’ve been established as “the problem”, if you open up or ask for help you are commonly given detrimental advice like, “Just try harder!”, “This is how life works, deal with it!” or, “You just need to apply yourself better.” We think to ourselves, “I am trying! Why is it not good enough? Why am I never good enough?”
The real game-changer when misunderstood is the ability to verbalize and communicate our internal experiences. Yes, we live in a world where the people born with social and communication challenges are left to their own devices to verbalize and communicate the exact and specific help they need or… well, they don’t get it! That is messed up! Whether we like it or not, it matters how we communicate our struggles and we even need to know when to communicate! The real question that should be asked is how exactly can we be expected to properly communicate and verbalize what we don’t understand in ourselves? Keeping all of that in mind, it is not surprising that 50–70% of neurodivergent adults suffer from serious depression, anxiety, and even PTSD, but what is talked about even less in neurodivergent circles and in the medical community, is that it may be Alexithymia behind a lot of our struggles to communicate and all we need to do is learn how. The ability to learn these skills are there for most of us, we just never even knew we had to learn these skills to ask for help, maintain relationships, be successful, get accommodations at work or school.
If you let only one point from this read sink in, let it be this one:
All children (not just neurodivergent or disabled children) greatly benefit from understanding how they operate internally, identifying feelings and emotions, and developing foundational skills for verbalizing their internal experiences far more than learning how to be a “productive” member of society alone… and the same goes for adults who were missed.
Not understanding our own internal experiences and being unable to verbalize them (but having the ability to) for doctors, our families, for maintaining relationships, and when asking for help and accommodations causes us to be left behind. If you have found it difficult to identify or describe your feelings and emotions on a regular basis, you may be experiencing Alexithymia.
The word ‘Alexithymia’ translates directly to ‘no words for feelings’. Clinically, Alexithymia refers to a person’s inability to identify or verbally describe their feelings, and just like I briefly mentioned above, yes, it is most prevalent within but is not exclusive to the Autistic and/or ADHD neurotypes. Just like with the spectrums of Autism and ADHD, Alexithymia is a spectrum and it is experienced quite differently from person to person and even experienced differently for individuals depending on their current environments. Other groups who experience Alexithymia are those struggling with elevated stress levels and/or psychosomatic issues, substance abuse, past trauma, and/or abuse and anxiety disorders.
Some have described Alexithymia as an atypical way of “feeling” rather than how emotions and feelings are typically presented. They say they experience their emotions and feelings as sensations in different parts of the body, much like synesthesia, rather than just something that is occurring as a response to what’s going on internally or externally. Others, like myself, have described Alexithymia as feeling quite similar to low emotional empathy but turned inward. For me, Alexithymia can be a toss-up between feeling strong sensations in my body and not know why or feeling completely disconnected from feeling at all.
Here are other examples of how Alexithymia can be experienced:
- Difficulty identifying different types of feelings
- Limited understanding of what causes feelings
- Difficulty expressing feelings
- Difficulty recognizing facial cues in others
- Limited or rigid imagination
- Constricted style of thinking
- Hypersensitive to physical sensations
- Detached or tentative connection to others
The list above shows that there is significant overlap within atypical neurotypes like Autism and ADHD and Alexithymia, but researchers have observed that there is no one neurotype or diagnosis that definitively explains or encompasses Alexithymia.
More recent studies now show that Alexithymia is more commonly what causes impaired interoception (perceiving the internal state of one’s body) rather than autism as previously thought, which may explain why this can vary so greatly with individuals. Currently data shows that up to 85% of autistic people and 40–50% of those with ADHD experience traits of alexithymia, which means if you’re either of those neurotypes, or you have a child that is, you should know more about it and how it may affect you and those you love.
Not understanding how or being unable to verbalize what is happening internally can make getting help feel impossible and I truly believe Alexithymia and the encompassing traits therein have directly contributed to why I was not diagnosed as autistic until I was in my mid-thirties, despite my numerous efforts seeking help for my “challenges” since I was a teenager.
Traits of Alexithymia and poor interoception also makes traditional therapy extremely difficult to navigate. You would be hardpressed to find a therapist who doesn’t open a therapy session or visit by asking common prompts like, “How are you feeling today?”, “How do you feel about that situation?”, “What did you feel inside when that happened?”, “On a scale of 1–10 how much pain are you in?” or “How does that make you feel?”. If you have Alexithymia, you may not be able to answer those questions, and this is directly related to our outcomes if they are not answered or communicated accurately. I can’t tell you how many times I would be sitting with a therapist and thought that sinking feeling that we aren’t “clicking”. In the past, I would assume that the wall between me and my past therapists was them not “getting” or understanding me, but after now understand more about my internal experiences, I have learned how to communicate more effectively and self-advocate in more successful ways for the outcomes I am looking for.
One of the most recommended and positive treatments for those looking to improve impaired interoception or those hoping to better understand their internal experiences is CBT or Cognitive Behavioral Therapy. It’s also important to note that the best results will be achieved by working with a doctor or therapist that is knowledgable of the specific approaches required for specific challenges that come with impaired interoception and Alexithymia.
If you are unsure whether you struggle with Alexithymia (or maybe you’re not sure how you feel about it? :D), take the online test here and talk to your doctor or therapist about your results.
Sources:
https://lesley.edu/article/the-psychology-of-emotional-and-cognitive-empathy
https://www.sciencedirect.com/science/article/pii/S0010945216300594
https://blogs.scientificamerican.com/mind-guest-blog/the-emotional-blindness-of-alexithymia/
https://www.sciencedirect.com/topics/neuroscience/alexithymia
