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Key points
- The majority of autistic people have alexithymia.
- Alexithymia is an inability to interpret your own internal emotional and physical states.
- Living with alexithymia can be debilitating in numerous ways.
Alexithymia is one of the more common features of autism spectrum disorder (ASD). Not all autistic people have alexithymia, but many do (Kinnaird, Stewart, Tchanturia, 2019).
Alexithymia is difficulty processing and understanding your own emotional states. It is difficult recognizing your own emotions and your own bodily states.
Current research is driven toward understanding what causes alexithymia. Neuroimaging studies comparing different types of autism and physiological studies looking at skin conductance are making progress in explaining why many people with autism can’t understand their own internal states. I have read many clinical articles by researchers and people with doctorates that describe how debilitating alexithymia can be.
One of the more pivotal things I have heard researchers say is that emotional regulation becomes more challenging if you can’t identify your emotions at the moment. Also, meltdowns are more common for people with high alexithymia. This is good information, but somehow it fails to explain how difficult it is to live with alexithymia.
Diagnosed as an Adult
I was in my 40s when I was diagnosed with autism, and I didn’t realize how entirely disconnected I was from myself until I was diagnosed. I have anxiety in many situations, and this anxiety has led to burnout, meltdowns, and shutdowns throughout my life.
However, if you had asked me prior to my diagnosis if I was an anxious person, I would have said, “No.” At every doctor’s appointment I have been to I describe my pain levels as 5 because I don’t understand the difference between a stubbed toe and a broken bone. I struggle to identify when I am sad unless I am bottoming out.
The emotions are there and when they become intense enough, they can shut me down. Other people can sometimes tell me I am anxious, but I can’t identify the emotion without extensive time and analysis. All emotions feel the same. They feel like overwhelming blobs of yuck inside me, and it isn’t until I have been given time do I realize that I was in agony or heartbroken or having a panic attack.
What is worse is that I often respond incorrectly with my face to emotional situations because I don't know what to feel.
Coping Skills Needed
This has led to a coping skill that many of my autistic clients engage in. Since we often can’t interpret our feelings at the moment, we try to reason through things. I can’t understand fear at the moment, so I try to look around and see things in my environment that should be scary and analyze their risk based on several reasonable constructs.
I can’t interpret pain properly, so I try to be logical in my way through, whether or not it is reasonable to be distressed by the severity of the situation. This is time-consuming and exhausting, and I am often very wrong. I will end up in the ER for a stubbed toe and will ignore a broken bone.
I will run happily into dangerous situations and avoid safe ones. Gut instincts are critical in decision making and I have none. Intuition is the backbone of life, and it is an enigma to me. People say follow your heart, but I can’t even imagine what following my heart might feel like.
The Challenges of Relationships
This impacts every human relationship I have. I have feelings and they impact me profoundly, but I can’t identify them until far after the point I need to. I often end up in relationships, friendships, and workplace situations in which I won’t realize someone is upsetting me until I have snapped at them. Even after I have snapped, it will take me a while to do a deep analysis of the behavioral interactions to connect with the emotions that lead to that moment.
Alternatively, I will try to look at what I believe other people are thinking or feeling and try to alleviate their discomfort. It is easier for me to comprehend when other people are uncomfortable than for me to perceive my own discomfort. Neurotypical humans also just clearly state and show their feelings and wants and this is something that is easy for me to respond to and help with.
This leads to me fixating on what others need and preventing other's suffering and fixating on tasks related to helping others. I can help them. I have no idea what to do with my feelings.
In my pair-bonded relationships, alexithymia can be devastating. I watch and try to respond to the needs of my partner, but when I become overwhelmed by my inability to express my needs in any rational way, I melt down. I tend to approach social relationships like I approach chess. I can memorize the Adelaide gambit or the Baltic defense. I can memorize the theory.
Somehow this makes things worse. If a player responds in any way that differs from what I planned or what I thought they should do based on computers and books, I react erratically. I can’t respond to any move in chess that requires intuition or gut instinct. I can only memorize patterns and replay them. I lose every game.
To me, this is life with Alexithymia. I am always planning everything in life 80 moves in advance. I hope that all this planning will compensate for my lack of intuition and gut instinct and that it will protect me from the hurt that I feel deeply and profoundly when all the emotions I didn’t feel at the moment hit me days later or when I finally meltdown. I overcompensate by being a compulsive caretaker in relationships but have no idea how to let people into my inner world or explain it.
It is difficult to explain what it is like to think like I think. I have tried to explain to neurotypical people what it is like to have to constantly analyze every variable to try to predict outcomes. People tell me not to overthink things, but what is the alternative? Without overthinking I would become nonfunctional.
How can I act or live without constant thought and planning? Sometimes I forget basic things like going to the bathroom or eating because I don’t notice the bodily cues that tell me to do these things. I must constantly do body checks to make sure I have done basic survival tasks.
I end up with bruises and cuts all over me because I don’t notice injuries and I can’t remember how I was injured. I must think constantly, and if I stop what then?
References
Graeme J. Taylor; R. Michael Bagby Psychotherapy and Psychosomatics; Mar/Apr 2004; 73, 2; ProQuest Psychology Journals. p 68
Hogeveen, Jeremy & Grafman, Jordan. (2021). Alexithymia. 10.1016/B978-0-12-822290-4.00004-9
