When I was a child, my mother would angrily ask me why I had done or said something and I would respond, honestly, “I don’t know.” This response did nothing to relieve her anger because she couldn’t conceive of someone not knowing why they behaved the way they did, so she assumed I was lying and just didn’t want to incriminate myself by revealing my true motivations.
Sometimes now, from a distance of decades, I can explain my behavior. Time, experience, and an increased vocabulary have helped me to understand my younger self better and be more well-equipped to communicate my childhood thoughts than I was at the time.
But just as often, I still have no idea why I did or said the things I did because I still have so little connection with or understanding of my emotional life, both in childhood and today.
I have a condition called alexithymia. The name comes from Greek roots: a-, meaning ‘without’, lexi, meaning ‘words’, and thymia, meaning ’emotions.’ Without words for emotions.
That’s a pretty good name for it, because that’s pretty much what it is. I do have emotions — quite strong emotions, in fact. Much stronger than I wish they were. But when I try to understand what I’m feelign or why I’m feeling it, I am at a loss. I can generally tell you (sometimes after pausing to do an internal assessment first) if I’m generally feeling “good” or “bad.” I can usually put words to the emotions that are painted in very broad strokes: happy, sad, angry. But that’s about the limit of my emotional vocabulary.
To me, emotions are like storms at sea. They are mysterious and unpredictable. I feel like I can go from zero to furious in 0.4 seconds because I am unable to see all the intermediate shades of emotion along the route to furious, so when I finally arrive at that destination, it feels to me as if it came out of nowhere. I think it often seems that way to onlookers as well, because my Autistic style of emoting is not always very easy for people to understand.
I regularly get feedback from others who have interpreted my “contented” as “distraught” (it’s called “resting face,” people. Mine apparently has a sad/angry tone to it, so I have learned that I have to intentionally add artificial smiles to my face if I don’t want others to accidentally mis-read me as dangerous and unapproachable.) I’ve also gotten feedback from people who see “nervous” or ” anxious” when I am actually “energetic and happy.” It’s called stimming, folks…..it’s not always a sign of anxiety in people with my neurology. Ironically, I have been riddled with anxiety but when I discuss it with someone who doesn’t know me extremely well, they think I’m exaggerating because they can’t see the external signs of anxiety they are accustomed to reading from non-autistic people’s body language.
I try my best to live in the deep waters beneath that stormy surface. Meditation helps a lot. My role model is Mr. Spock from Star Trek. Vulcans have emotions but practice meditation and other rituals from an early age to learn to control their emotions rather than allowing their emotions to control them. I work hard to replicate fictional Vulcan emotional training as best I can in my frustratingly non-fiction human life. Sometimes it even works. I get better at it as time goes on. But I still “lose it” on a regular basis. It’s a work in progress.
A 2016 article in Scientific American says that 10% of the general population has alexithymia while 50% of Autistics have alexithymia. I have seen other sources estimate higher numbers, but 50% is a good, conservative estimate. My reading indicates that alexithymia in the non-autistic population is very oftne the result of an emotional trauma. No one (to my knowledge. If you know of a case, please share it in the comments) has studied whether Autistic alexithymia is the result of emotional trauma (which wouldn’t surprise me, since growing up Autistic in a non-autistic society can be intensely traumatizing) or whether it’s part of how many of us are wired.
The difference — autism with or without alexithymia — could explain many of the differences among Autistics, for example, it might be part of the explanation for why some of us (like me) avoid eye contact while I’ve met lots of other Autistics who report having no trouble at all with making eye contact with others.
Having alexithymia (and some states-of-being that seem closely connected for me, such as a very low level of body-awareness) means that when I figure out that I am feeling bad, I have to play detective to try to understand why I am feelign bad and what, if anything, I should do about it.
I have developed a sort of check-list to help me navigate the experience of being embodied.
First I have to figure out if I am in need of my checklist. Here are some of my warning signs that I’m not functioning optimally:
- I am screaming
- I am crying
- My body is shaking
- I am obsessively going over unpleasant past memories
- I am spontaneously (meaning I am doing it during my personal time, not as research for something I am writing) conducting Google searches on topics related to unpleasant human interactions and how to cope with them
- I am dizzy or experiencing some non-typical (for me) cognitive difficulties
- I have lost the ability to speak
- I find myself unwilling to go someplace or do something I either enjoy or know that I need to do in order to keep my world intact (like the tax office or the social Security office)
- I am not sleeping (or sleeping too much)
- I am not eating (or eating too much)
- I am constantly thinking bad thoughts about everything the people around me are doing
These are my main warning signs that I need to run a self-diagnostic check. If you have similar difficulties to the ones I discuss in this essay, you might want to write out your own list of warning signs.
My diagnostic checklist starts with medical emergencies and works its way down from there.
- Check my blood sugar
- Check my temperature
- Assess whether I need to use the bathroom (strange though it may sound to those who don’t experience this, I am often unaware of physical needs unless I specifically direct my attention to the body I live in and focus on the physical sensations it is experiencing.)
- When did I last sleep? Am I sleep deprived?
- When did I last hydrate?
- When did I last eat?
- Am I experiencing an emotion? Try to discern whether it is mostly anger or mostly sorrow. Continue to break it down from there, looking for physical clues.
A book I’ve found helpful in this last task is: The Emotion Thesaurus. It is a book for writers and it includes descriptions of the physical things that happen to the body when experiencing 75 different emotions. I would love to have the emotion body responses turned into a deck of cards I could carry in my pocket.
The only emotion cards I’ve ever seen are profoundly unhelpful for me because they just have things like photographs of human faces experiencing feelings (useless for me as I can’t read feelings from a photograph) or even worse, cartoon drawings of emotions. I need the body experience descriptions like in the Emotion Thesaurus to help me identify the emotions my body is having.
Usually by this point in my checklist I’ve found my trouble. If not, I just try to do what I can to mitigate the damage — isolate myself from others, be kind and nurturing to myself, try to dive beneath the surface if I can and if I can’t, I try to wait for the storm to blow over and the sea to become calm again.
I wish I had more to say about emotions and alexithymia, but I’ve pretty much hit the end of what I have on offer for this topic. If you’ve read my blog for very long, you’ll realize what a statement that is, because my standard blog essay is twice the length of this one. Struggling with emotional lability and alexithymia has been the battle of a lifetime for me and I sometimes wryly joke that I’ll finally get it figured out when I’m lying on my deathbed at 120 years old. Things do seem to be getting better, though. My 40s have been much better than my 30s. My teens and 20s were such horror shows I’m amazed I survived them. I predict my 50s will be my best decade yet.
If you’re a parent and you’re struggling with your child’s emotions, you might feel like life is punishing you, but I’m here to tell you that the real hell is the one your child is living through. I know it’s hard to be gentle and understanding with someone who yells and throws things, hits and bites. But I’ve been that person for a lot of my life and gentle understanding is exactly what we need most. Help your beloved person learn how to trouble shoot and do self-checks. Help them learn how to decipher and name emotions. Help them find emotional management techniques that work for them.
Don’t get upset if they reject meditation or breathing techniques. We’re all different and some Autistics get *MORE* anxious when they try to use these tools. Don’t be afraid to try medications but work to avoid “drugged zombie” as a chosen result. It might be easier for people around us when we’re doped out of our emotions, but it’s not good for us. Vow to only use medication that enhances an Autistic’s life and coping skills, and never use medication or dosage levels that operates as a “chemical straitjacket”. Our responses to medications are often non-standard so be prepared to experiment with much smaller (or much larger) doses than other people need. For example, Temple Grandin recommends using only a 1/3 dose of anti-anxiety medications when prescribing for Autistic people.
I hope something, anything, I’ve written here is helpful to you. I’d love to see a lot of discussion in the comments section. This is a topic I’ve struggled so hard with that I feel inadequate to even address it at all. But it needs to be said, so here I am saying it. Be well, gentle readers, and may your emotions ever serve you rather than the other way around.
edited to add:
A linkback from another blog that linked to this post included a link to an alexithymia questionnaire that quanitifes one’s level of Alexithymia. I scored 149, “high alexithymic traits.”