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Alexithymia & autism guide

Alexithymia is very common among autistic people. Research indi­cates 40–65%[1][2] of us have alexithymia—or even as high as 70%[3]—compared to 4.89% in the general popu­la­tion.[4]

It’s so common that some symp­toms gener­ally attrib­uted to autism (to the point of being part of the diag­nostic criteria for autism) actu­ally stem from alex­ithymia instead! More about that later in this post.

So what is alex­ithymia, and how does it develop?


An illustration of a butterfly, used as a symbol for alexithymia.

Alexithymia

Alexithymia is a condi­tion where you have chal­lenges iden­ti­fying and describing emotions in the self. Essentially, alex­ithymia is a differ­ence in emotion processing. The term was intro­duced by Peter Emanuel Sifneos in 1972, from the Greek a for lack, lexis for word, and thymos for emotion, meaning lack of words for emotions or simply no words for emotions.[5]

More compre­hen­sively though, alex­ithymia is defined by:

  1. Difficulty iden­ti­fying feel­ings.
  2. Difficulty distin­guishing between feel­ings and the bodily sensa­tions (inte­ro­cep­tion) of emotional arousal
  3. Difficulty describing feel­ings to other people.
  4. Difficulty iden­ti­fying facial expres­sions.
  5. Difficulty identifying/remembering faces. (an extreme form of the latter is prosopag­nosia/face blind­ness)
  6. Difficulty fanta­sizing.
  7. A thinking style focused on external events (often avoiding inner expe­ri­ences).

You don’t need to expe­ri­ence all or most of these to qualify for alex­ithymia, however. I will explain later in this post which of the 7 points above we tend to see in autistic people.

When it comes to diffi­culty iden­ti­fying and describing feel­ings, expe­ri­ences prob­ably vary, but mine goes like this. When I am asked about an emotional expe­ri­ence or what I think another person’s emotional expe­ri­ence is like, my initial response tends to be “I don’t know”. But Natalie has learned to not accept this for an answer. After she asks me a second time, I can usually access my emotions better. So the iden­ti­fi­ca­tion of feel­ings often comes with a delay when pressed.

When I got diag­nosed with autism at 25, my diag­nos­ti­cian said I “have a lack of internal dynamics”. It took me quite a while to figure out what he meant, but I now think what he was alluding to was alex­ithymia. I used to express my emotions with vague approx­i­ma­tions (I feel good, or I feel content, or I feel bad) if at all; and I still do to a degree, but I have gotten a lot better at exploring my inner emotional world and giving it a more nuanced expres­sion when someone asks me about my feel­ings. Learning about alex­ithymia has been profoundly useful for me. I hope it is as illu­mi­nating for you as well.

For more infor­ma­tion on the expe­ri­ence of alex­ithymia, I highly recom­mend reading
the post below, which I wrote when my alex­ithymia was partic­u­larly high:

The experience of alexithymia

An illustration of a butterfly with different colors for both wings, representing two different types of alexithymia.

Types of alexithymia

Alexithymia can be divided into two types:

  • Cognitive alex­ithymia — The cogni­tive dimen­sion of alex­ithymia has to do with diffi­cul­ties in iden­ti­fying, verbal­izing, and analyzing emotions. Basically, this is #1–4 from the list above.
  • Affective alex­ithymia — The affec­tive dimen­sion of alex­ithymia has to do with differ­ences in imag­i­na­tion and emotional arousal (height­ened emotional activity as a result of a stim­ulus). This refers to #6 and #7 from the list above.

There are also a few more types of alex­ithymia based on etiology (meaning different causes), which I will discuss below.


An illustration of three butterflies in rotational symmetry, each representing a different etiological type of alexithymia.

Causes

Alexithymia can develop in three different ways:

Primary alexithymia

  • Cause: genetics & family rela­tions
  • Description: Primary alex­ithymia is a life­long condi­tion, caused by child­hood trauma[6] or nega­tive primary care­givers inter­ac­tions.[7] So primary alex­ithymia develops early, and becomes molded during child­hood and early adult years as person­ality traits.[8] Hence primary alex­ithymia is also called trait alex­ithymia.

Secondary alexithymia

  • Cause: psycho­log­ical distress
  • Description: Secondary alex­ithymia refers to alex­ithymic char­ac­ter­is­tics resulting from psycho­log­ical stress, chronic disease, or organic processes (such as brain trauma or a stroke) that occur after child­hood.[9] Secondary alex­ithymia is less ingrained, as it’s based on (tempo­rary) states rather than person­ality traits. As such, it’s also referred to as state alex­ithymia.

Organic alexithymia

  • Cause: trauma (vascular or other brain damage)
  • Description: A sub-category of secondary alex­ithymia, organic alex­ithymia is caused by damage to brain struc­tures involved in emotional processing.[10]

An illustration of a shield with a butterfly design, representing the defensive aspect of alexithymia.

Defense mechanism

In our initial post on alex­ithymia (enti­tled Alexithymia), I argued how alex­ithymia is likely a protec­tion mechanism—not just a nuisance. I argued that in an envi­ron­ment where your emotions just get you into trouble or makes things too hard to bear, alex­ithymia can increase and conse­quence reduce your emotional expe­ri­ence so you are less burdened by your emotions. As it turns out, I was correct!

Research shows that alex­ithymia is a defense or protec­tion against highly emotional events.[11] This view is also supported by the higher levels of alex­ithymia found in holo­caust survivors[12] and sexual assault victims.[13]

Research from 2012 by Oriel FeldmanHall , Tim Dalgleish, and Dean Mobbs also shows that people who are high on the alex­ithymia spec­trum report less distress at seeing others in pain.[14] That may sound good for the alex­ithymic indi­vidual (although personal distress in alex­ithymics is high[15]), but as a conse­quence, they also behave less altru­is­ti­cally.[16]

I can person­ally attest to that. For example, when I was 27 or so, as I was walking to the grocery store, a few meters away from me a woman in her early 30s fell off her bike. I chuckled as I continued walking, and to my surprise, a man and a woman (who had no connec­tion with each other as far as I saw) came running to help her get back on her bike. I thought it was all a bit dramatic, like you might see in the movies. I thought to myself, “If it was a guy falling you would likely not have come to the rescue.” The reason I could laugh about what happened was that I saw she was fine anyway. Had it been serious, I would have helped out if no one else did. But I also figured I had a lesser incli­na­tion to help because I fell off my bike many times. Yes, it hurts. And then I get up. People “helping me out” has always embar­rassed me; it was much better if everyone just pretended they hadn’t seen anything.

That was the old alex­ithymic me. Today I am a new alex­ithymic me. While I think I would likely respond the same way to that situ­a­tion as I did then if it were to happen today, I also recog­nize that not helping out because I didn’t want to be helped when I fell off my bike is projec­tion; how I want others to respond to me is not neces­sarily how others want people to respond. Being autistic and alex­ithymic, I’m not neces­sarily in tune with how people want me to respond.

Let’s look at how alex­ithymia presents itself in autism specif­i­cally. It’s actu­ally really fasci­nating!


An illustration of a butterfly, used as a symbol for alexithymia.

Alexithymia in autism

Although I have not been able to substan­tiate this with research, I believe autistic people tend to have primary alex­ithymia, though secondary alex­ithymia could also occur in autistic people.[17] Organic alex­ithymia likely has the same occur­rence in both autis­tics and non-autistics. As it happens, when I was 13 I was cata­pulted out of a tree (long story) and cracked my skull. Although my expe­ri­ence is different, according to my mother I changed person­ality since then, so I might have organic alex­ithymia on top of primary alex­ithymia. Over the years I managed to reduce it consid­er­ably, however.

In any case, research from 2005 by Sylvie Berthoz and Elisabeth Hill shows that autistic people have cogni­tive alex­ithymia specif­i­cally.[18] So that means chal­lenges with iden­ti­fying and describing feel­ings, chal­lenges with distin­guishing between feel­ings and bodily sensa­tions (called inte­ro­cep­tion), diffi­cul­ties with iden­ti­fying facial expres­sions, and diffi­cul­ties with iden­ti­fying and remem­bering faces.

So, issues with theory of mind often attrib­uted to autism? Research shows that’s alex­ithymia[19][20] (although research by Bethany Oakley, Rebecca Brewer, Geoff Bird and Caroline Catmur shows it’s not chal­lenges with theory of mind but with emotion recog­ni­tion that relates to alex­ithymia[21]) Do you tend to forget people’s faces? That’s alex­ithymia. Do you not recog­nize that you are hungry until hours later, at which point your sugar levels have dropped and you feel sick? Yep, that’s alex­ithymia. Specifically, that’s dimin­ished inte­ro­cep­tion due to alex­ithymia. So we may be less aware of our breathing, hunger, thirst, or our heart rate.

Interestingly, research by Punit Shah, Caroline Catmur & Geoff Bird from 2016 shows that emotional and inte­ro­cep­tive signals don’t influ­ence the decision-making process in autistic people with alex­ithymia, unlike in neurotyp­ical people with alex­ithymia.[22] But essen­tially, it seems all emotion processing differ­ences thought to be part of autism are actu­ally due to alex­ithymia![23] In a paper from 2013, Geoff Bird and Richard Cook refer to this as the alex­ithymia hypoth­esis.[24]

What we don’t tend to expe­ri­ence is affec­tive alex­ithymia; so we do not gener­ally have a limited imag­i­na­tion or a lack of fantasies. I think our imag­i­na­tion is often quite rich (as a kid I was always described as a dreamer, and would write imag­i­na­tive stories), and a lot of us have creative abil­i­ties and inter­ests. However, I have heard some accounts of autistic people who only dream about prac­tical and mundane things, which suggests that some autistic people have affec­tive alex­ithymia as well.

So now let’s talk about the aspects we thought were part of autism, but are actu­ally due to alex­ithymia.


An illustration of a butterfly in a box with other butterflies flying outside of it, as a representation of alexithymia-induced social isolation.

Social isolation

The first aspect we perhaps mistak­enly thought was part of autism for the longest time is low socia­bility. Research from 2019 by Matthew D. Lerner et al. shows that:[25]

  • Autistic adults had a similar amount and pattern of social inter­ac­tions with others, compared to non-autistic adults.
  • Difficulties with iden­ti­fying emotions in both the self and others were asso­ci­ated with fewer social inter­ac­tions.
  • The severity of alex­ithymia symp­toms predicts fewer social inter­ac­tions regard­less of autism status.

This seems to suggest that when you have a lower aware­ness of emotions in the self and others, you are less likely to be socially moti­vated, or maybe more likely to be put off by the social chal­lenges. I can imagine that if you don’t have good aware­ness or a signif­i­cant under­standing of the emotions of your­self and others, you will not be inter­ested in emotions and inter­acting, and are more likely focused on activ­i­ties and exploring concepts. That is certainly true for me. I am a lot more object-oriented than people-oriented. Talking a lot about feel­ings and rela­tions bore me, unless there are inter­esting psycho­log­ical or philo­soph­ical layers to be explored.

Research from 2010 by Jamileh Zareia and Mohammad ali Besharatb also shows a range of inter­per­sonal prob­lems related to alex­ithymia, including:[26]

  • Assertiveness
  • Sociability
  • Submissiveness
  • Intimacy
  • Responsibility
  • Controlling

Research from 2015 by Lucy Foulkes et al. also showed that:[27]

  • Both autistic traits and alex­ithymia reduce admi­ra­tion (the enjoy­ment of being flat­tered).
  • Both autistic traits and alex­ithymia increase nega­tive social potency (the enjoy­ment of being cruel, callous and using others for personal gains), but more so due to alex­ithymia.
  • Both autistic traits and alex­ithymia increase passivity (the enjoy­ment of giving others control and allowing them to make deci­sions).
  • Both autistic traits and alex­ithymia decrease proso­cial inter­ac­tion (the enjoy­ment of having kind, reci­p­rocal rela­tion­ships), but alex­ithymia more so.
  • Both autistic traits and alex­ithymia decrease sexual rela­tion­ships (the enjoy­ment of having frequent sexual expe­ri­ences), but autism more so.
  • Both autistic traits and alex­ithymia decrease socia­bility (the enjoy­ment of engaging in group inter­ac­tions), but autism much more so.

In the table below, you can see an overview of the asso­ci­a­tions of different factors of social reward with autistic traits and alex­ithymia.

Correlations between autistic traits, alex­ithymia and social reward.

So if you isolate your­self a lot, or expe­ri­ence other inter­per­sonal chal­lenges, it may be due to your (co-occurring) alex­ithymia rather than your autism specif­i­cally, although both factors seem to influ­ence social reward in different ways.


An illustration of two intersecting people representing (mutual) empathy, and a butterfly that obscures that intersection.

Lower empathy

According to the simu­la­tion theory of empathy, people simu­late the feel­ings they observe in others in their mind, so that they can better under­stand and predict the feel­ings of others. So having chal­lenges with inter­preting and describing your own emotions and internal processes will result in diffi­cul­ties empathizing with others’ feel­ings.

So that myth about autistic people not showing empathy? Well, it IS a myth, but for different reasons than you might think; autistic people indeed some­times fail to respond empa­thet­i­cally, but it’s not due to their autism, but because of their alex­ithymia! The higher the alex­ithymia, the more poten­tial prob­lems with empathy.

And it’s not just cogni­tive empathy that is dimin­ished by alex­ithymia! Research from 2018 by Cari-lène Mul et al. shows that autistic people with alex­ithymia have both lower cogni­tive and emotional empathy than autistic people without alex­ithymia.[28] The research also showed that autistic people have a reduced inte­ro­cep­tive sensi­tivity (they don’t feel internal bodily sensa­tions such as hunger as readily) which was not influ­enced by alex­ithymia, and a reduced inte­ro­cep­tive aware­ness (meaning we are less aware of the bodily signals we already feel less), which was found to be influ­enced by both alex­ithymia and empathy.

Research also shows that decreased empathy causes a sense of lone­li­ness, so that’s another reason why it’s in your best interest to focus on resolving your alex­ithymia.[29]

It’s impor­tant to note though that autism itself is not related to low emotional empathy. Quite the oppo­site, in fact. Research from 2017 by Adam Smith shows our emotional empathy is intact and even elevated[30] (which some call empa­thetic over­arousal,[31] though I don’t think this is really going to catch on with the ladies). No, it’s our cogni­tive empathy that tends to be lower than average.[32]

And this is a problem for us, because research from 2018 by Jason Boss and Mark A. Stokes showed that for autistic people only, cogni­tive empathy is required for emotional empathy to lead to personal well­being.[33] What does that mean? Well, what Natalie sees in her prac­tice is that when it comes to autistic people and trauma, they tend to be the easiest patients to help, because basi­cally you just have to explain things to them, and just by under­standing it now they tend to get better. So first cogni­tive empathy needs to be present, so you under­stand the emotions of your­self and others. It’s that under­standing you need to make sense of your own emotional expe­ri­ences. If you can’t make sense of them, it is diffi­cult to find happi­ness in that. But also, with high alex­ithymia and low cogni­tive empathy, a lot of emotions and feel­ings will fly under the radar of your own aware­ness, while still having an effect on your mood and behav­iors.

So only when cogni­tive empathy is high are autistic people able to expe­ri­ence the posi­tive rela­tion­ship between affec­tive empathy and personal well­being. When cogni­tive empathy is low, that rela­tion­ship becomes nega­tive, meaning when more feel­ings come up that you are unable to process and may not even be fully aware of, your well­being will go down.

For more infor­ma­tion on empathy and autism, have a look at:

Empathy & autism

An illustration of a person making two ambiguous faces, and a question mark surrounded by two butterflies.

Face-perception differences

It is often stated that autistic people have diffi­culty iden­ti­fying facial expres­sions, but research from 2013 by Richard Cook et al. shows that the face-perception differ­ences which we thought were due to autism are actu­ally the cause of alex­ithymia.[34] The research study consisted of two exper­i­ments:

Experiment 1 showed that alex­ithymia corre­lates strongly with the preci­sion of expres­sion attri­bu­tions, whereas autism severity was unre­lated to expression-recognition ability.

In other words, alex­ithymia lowered the preci­sion with which both the autistic group and the control group could iden­tify facial expres­sions.

Experiment 2 confirmed that alex­ithymia is not asso­ci­ated with impaired ability to detect expres­sion vari­a­tion; instead, results suggested that alex­ithymia is asso­ci­ated with diffi­cul­ties inter­preting intact sensory descrip­tions.

Experiment 2 was a matching task, where either features of different people or different facial expres­sions were merged to show 20% of another photo. The exper­i­ment showed that people with alex­ithymia (regard­less of whether they are autistic or not) had no prob­lems with detecting these phys­ical differ­ences, but never­the­less had diffi­culty iden­ti­fying facial expres­sions correctly. So it’s not that we see no phys­ical differ­ences, but we don’t neces­sarily know what those differ­ences mean. My expe­ri­ence is that facial expres­sions are some­times quite ambiguous to me, so rather than not knowing what different facial expres­sions mean, my chal­lenge is that some­times I can imagine different emotional moti­va­tions for making that partic­ular facial expres­sion. I don’t believe I have a lot of diffi­cul­ties iden­ti­fying or describing facial expres­sions in general though, even though my alex­ithymia is high.

In any case, the researchers of the study suggest that current diag­nostic criteria of autism may need to be revised, because some of the diag­nostic criteria for autism actu­ally refer to alex­ithymia instead.[35] But given that alex­ithymia occurs so often in the autistic popu­la­tion, I would argue it can still contribute signif­i­cantly to an autism diag­nosis.


Do you want to know if you have alex­ithymia?
Take the Alexithymia Questionaire here:

Alexithymia questionnaire online test

References   [ + ]

1, 18.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)
3.Measuring the effects of alex­ithymia on percep­tion of emotional vocal­iza­tions in autistic spec­trum disorder and typical devel­op­ment (Heaton, 2012)
4.Investigating alex­ithymia in autism: A system­atic review and meta-analysis (Kinnaird, Stewart & Tchanturia, 2019)
5.Peter Emanuel Sifneos | The Harvard Gazette (2010)
6.
7.
8, 9, 10, 11.
12.Alexithymia in Holocaust survivors with and without PTSD (Yehuda et al., 1997)
13.Alexithymia in victims of sexual assault: an effect of repeated trauma­ti­za­tion? (Zeitlin et al., 1993)
14, 16.Alexithymia decreases altruism in real social deci­sions (FeldmannHall, Dalgleish & Mobbs, 2012)
15, 20.Correlation between theory of mind and empathy among alex­ithymia college students (Xue, Hongchen & Lei, 2017)
17.Response to “Features of Alexithymia or features of Asperger’s syndrome?” by M. Corcos in European Child and Adolescent Psychiatry 12, 2003 (Fitzgerald, 2004)
19.Impaired self-awareness and theory of mind: An fMRI study of mental­izing in alex­ithymia (Moriguchi et al., 2006)
21.No Evidence for an Opposite Pattern of Cognitive Performance in Autistic Individuals with and without Alexithymia: a response to Rødgaard et al.
22.Emotional decision-making in autism spec­trum disorder: the roles of inte­ro­cep­tion and alex­ithymia (Shah, Catmur & Bird, 2016)
23.The Multifaceted Nature of Alexithymia – A Neuroscientific Perspective (Goerlich, 2018)
24.Mixed emotions: the contri­bu­tion of alex­ithymia to the emotional symp­toms of autism (Bird & Cook, 2013)
25.Alexithymia – not autism – is asso­ci­ated with frequency of social inter­ac­tions in adults (Lerner et al., 2019)
26.Alexithymia and inter­per­sonal prob­lems (Zarei & Besharat, 2010)
27.Common and Distinct Impacts of Autistic Traits and Alexithymia on Social Reward, Foulkes et al., 2005
28.The Feeling of Me Feeling for You: Interoception, Alexithymia and Empathy in Autism (Mul et al., 2018)
29.Trait empathy as a predictor of indi­vidual differ­ences in perceived lone­li­ness (Beadle et al., 2012)
30, 31.The Empathy Imbalance Hypothesis of Autism: A Theoretical Approach to Cognitive and Emotional Empathy in Autistic Development (Smith, 2017)
32.Impairments in cogni­tive empathy and alex­ithymia occur inde­pen­dently of exec­u­tive func­tioning in college students with autism (Ziermans & de Bruijn et al., 2018)
33.Cognitive empathy moder­ates the rela­tion­ship between affec­tive empathy and well­being in adoles­cents with autism spec­trum disorder (Boss & Stokes, 2018)
34, 35.Alexithymia, Not Autism, Predicts Poor Recognition of Emotional Facial Expressions (Cook et al., 2013)

Admiration, Affect regulation, Affective alexithymia, Alexithymia, Alexithymia hypothesis, Antonino Messina, Autonomic nervous system, Autonomic regulation, Basal ganglia, Brain damage, Cari-lène Mul, Caroline Catmur, Cerebral hemispheres, Childhood trauma, Cognitive alexithymia, Cognitive empathy, Corpus callosum, Dean Mobbs, Decision-making, Elisabeth Hill, Emotional arousal, Emotional empathy, Empathetic overarousal, Etiology, Faces, Facial expressions, Geoff Bird, Imagination, Intensive short-term dynamic psychotherapy (ISTDP), Interoception, Interpersonal ambivalence, Jason Boss, Kate Tchanturia, Lucy Foulkes, Mark A. Stokes, Meta-analysis, Negative social potency, Organic alexithymia, Oriel FeldmanHall, Passivity, Peter Emanuel Sifneos, Prosocial interaction, Prosopagnosia, Punit Shah, Rebecca Brewer, Richard Cook, Sexual relationships, Simulation theory of empathy, Sociability, Social reward, Somatization, Stimulus, Sylvie Berthoz, Systematic review, Tim Dalgleish, Trauma

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