Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Alexithymia: I Don’t Know How I Feel

exeter flowers

[image description: some white flowers, species unknown, in a graveyard in Exeter, Rhode Island. Image copyright Sparrow R. Jones]


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.”

 

The other blog entry is: Can you name all those emotions?
And the emotion blindness questionnaire is: Online Alexithymia Questionnaire

16 Comments

  1. I was at a writing conference with Angela Ackerman, the author of the Emotion Thesaurus. She was set up at the table beside me and on one of the same panels as me. I think you should contact her about putting the emotions on cards!

  2. I think this article has been amazingly helpful! You’ve described my son better than I could have done!! I’ve learnt a lot.
    I’m autistic too, but I don’t think I have alexithymia. Still, it’s hard to know after spending a lifetime monitoring myself. I’m getting that dictionary too.
    And. I’m 53. My 50s certainly have been the best time of my life so far. They will be for you too, I’m certain.

  3. I almost cried reading this. As a self-diagnosed autistic adult, I’ve really had my fair share of that moment of relief and solidarity the realization that other people feel it too brings. But this one really was the most intense. I didn’t think it was such a problem actually until I read this, and with every word you said it hit me how hard I’d been white-knuckling it my entire life, because, guess what, the exact thing that’s causing the problem in the first place.
    I notice I have a really hard time remembering to eat, which gets worse when my dysthymic episodes hit and I’ve gone days before without eating simply because I wasn’t paying attention. I’ve slowly gained little ways to keep myself in check, such as meal planning and routines help maintain the habit. I keep a gallon jug in my room that I know to finish by the end of the day, and being able to look at it in corellation to the time works really well in keeping me in check with my water intake (I have to put it somewhere really easy to see though, or I’ll forget to check). Phone timers and alarms are godsends.
    So I’ve kind of gotten the physical problems figured out (I’m still the worst at being sick and recognizing I’m injured), I find my mental illness has made it a lot easier to remember to check in with myself, but I still catch myself becoming angry at small statements or close to tears suddenly at seemingly random instances. My body knows my emotions so much more than my brain does. I’ve been able to pick up certain patterns. For instance, I know that if my shoulders are coming up around my ears suddenly that means I’m really anxious, but I don’t always notice I’m doing that. I can feel my stomach get tight at something, or my chest get really hot, or maybe my fingers are tingling, but I’ve only learned so much from trial-and-error what those reactions mean.
    This definitely gave me a lot to think about. I need to buy that book, both checklists were such helpful starting points, and kudos on the Star Trek reference. I’ll definitely be forwarding this along 🙂

    • unstrangemind

      February 13, 2017 at 11:17 am

      Nothing explains my life so well as Star Trek.

      I sometimes wonder what life is like for those unlike us, those who “just know” and don’t have to piece it all together through trial and error.

      Thank you for responding. It is good to hear from you.

  4. Thank you. I’ve read a lot about autism, and a lot of blogs by autistics but I’ve never read anything that so accurately describes my own experience of alexithymia. I identify so much with the checklists! I remember recently being swept by a wave of huge, dark emotion (in a pet shop, choosing cat food, hilariously enough) and having to stop dead and checklist myself. I’m in my 40s now and getting to grips with things a lot better than I have before. I still identify with the ‘I don’t know!’ Now I am at least better at slowing down a little and *looking* at what might be wrong. And I also find meditation helps immensely.

    Sorry, this is a bit splurge, but I did so want to thank you. I am so enormously appreciative that you took the time and effort to articulate this post.

    • unstrangemind

      February 13, 2017 at 11:14 am

      Thank you so much for your kind feedback. When I share my struggles, I never know if they will resonate with others or not. I’m so grateful that you took the time to respond and share.

  5. *waves from Georgia*

    Finally delurking to comment on a post.

    I don’t *think* that I have alexithymia on top of my autism. I don’t recall ever having any difficulty naming the emotion I was currently feeling.

    Nevertheless, a checklist of some sort would be of assistance with some body-unawareness issues I’ve been noticing lately.

    Some reading and thinking will be in order. Thanks!

    • unstrangemind

      February 14, 2017 at 9:09 am

      Glad to be helpful! Yes, low body awareness is a separate issue and I have both going on in my particular mix. I have talked with someone about collaborating on a book about low body awareness, but we are both so busy all the time that it never went beyond the discussion stage. I hope they get that book out, either with or without me, because it’s such an important topic.

  6. To paraphrase Jack Sparrow. I love emotions. I like to wave at them as they pass by.

    By this point (age 26, one year into having an Official Autism Diagnosis and finally having words to explain things) I’m kind of resigned to “I am feeling an emotion. What emotion that is, I’m not sure.”

    At least they tend to be slightly more pleasant than the random intrusive thoughts.

    But it’s great to hear that things do in fact improve past the shitshow that is teenage years and early twenties undiagosed and spiralling.

  7. Kelly Mahler has written a great book on the eighth sense, Interoception, which is missing those body signals like needing to go to the bathroom. If you have Sensory Processing Disorder along with alexithymia, type the terms Interoception and Alexithymia together and you’ll find some recent research.

  8. Jessica Sager

    May 7, 2017 at 7:51 pm

    “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.)”

    /\ /\ this is very helpful! I think my six and a half year old son is this way, too. He loathes being asked if he needs to go potty, although it must bring awareness to the situation b/c he almost always goes after I ask. I’ll try being more discreet and asking him to focus on his different sensations and see if they need addressing. He will probably feel less handled that way.

    I really enjoy your blog. It’s helping me find ways of wording things that my son may relate to, better than my perspective. (If that makes sense. I have ADHD and have a terrible time organizing my thoughts. Add in the noise of two kids – my daughter is three – and it’s a wonder I can string two sentences together!)

  9. This is such a useful article. I have this down to the last detail, and I’ve been using the same checklists for years now. I never knew it had a name! Thank you so much for this.

  10. Interesting post! Can’t remember whether I responded to the original version of this post or not….

    When I did the alexithymia questionnaire, I scored “High Alexithymic Traits” on everything but the imagination portion (my imagination tends to be balanced between spontaneous and controlled, to reference another earlier post of yours). I honestly don’t know if emotional trauma was involved or not (there are some bullying episodes I underwent as a 6 year old that I’ve repressed quite thoroughly), but yeah, there’s some difficulty there. I don’t have as much crossover with the physical as you and Cynthia (Musings) have, but there is some there – generally what lets me know that I’m upset is tension in my shoulders, for example.

    Oh, and my resting face seems to be like yours, in that my mouth turns down, quite naturally, when my face is in “neutral” mode. Which has made it difficult for others to help me identify my emotions unless they are obvious enough that even I can tell what they are.

    And I was very lucky with the psychologist I had for a few years before I moved to Newfoundland, where I am now. Once of the things he did with me was help me to analyze my emotions when something came up, to try to get down to the core of them. It wasn’t easy, but it helped me start to be able to label certain more emotions with more than just “upset” “anger” “sadness” “happiness” (aka the general terms).

    Anyway. Another good post – thank you!

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