“Alexithymia is a personality construct* characterized by the subclinical** inability to identify and describe emotions experienced by one’s self and others. The core characteristics of Alexithymia are marked dysfunction*** in emotional awareness, social attachment and interpersonal relating. Furthermore people with alexithymia have difficulty in distinguishing and appreciating the emotions of others, which is thought to lead to unempathetic**** and ineffective emotional responding.***** Alexithymia occurs in approximately 10% of the population and can occur with an number of psychiatric conditions. [wikipedia 13 june 2020] (italics mine).
*personality construct? oh, please!
**subclinical? nee, man! [no, man!] it can be significantly disabling, very confusing and distressing.
*** why is a “marked dysfunction” “subclinical” is what i want to know.
****oh dear! (this is a truly unempathic statement for us hyper-empathic aspies. we might seem unempathic from the outside, and respond awkwardly. but we are deeply empathic, some of us. “personality construct”. what a nice sounding construct. it is the inability to respond spontaneously and, it creates a lot of anxiety and is severely distressing. imagine being mis-read all the time, by people who think you don’t care, are cold and hard. and us misreading others! and feeling misunderstood, anxious, confused.
and if it does lead to unempathic emotional responding (as it can, of course), see ** (can be extremely distressing for partners, children, colleagues- is often experienced by others as verbal/ emotional abuse)
***** see **
According to Gillberg (gillbergcentre.gu.se) ESSENCE conditions also occur within approximately 10% of the population. I do wonder if there might be some clinically significant overlap? just asking. i would add alexithymia to the lot of ESSENCE conditions, and call it emotional processing disorder. because that is what it is. i think.
social communication, social interaction, and social imagination are at the core of autism. is alexithymia not core to all that? faulty, slow processing of emotions in unpredictable social situations. same with context context blindness. context blindness because of alexithymia. how can i read a context correct if i don’t know what i am feeling or if what i am feeling is someone else’s? i then i go into my memory bank, press the “neurotypical behaviour” knoppie, [button] and hope for the best. sometimes i am brilliant at acting as if i am fine and go home and wonder why i feel so overwhelmed by a “normal”, “nice”, “slightly uneasy, but no hard feelings” moment. (multiply slightly uneasy by at least 4 or 5 and let it last for years).
i did not know that i do not know how i feel most of the time. i understand other people well, i can sense how they feel, because i have figured it out, logically, and i can feel their emotions, often not knowing that i do. i am not context blind when others are concerned. i can read systems well, and can often predict other people’s behaviour, because that is logical. i am good at “seeing” and understanding human interactions and systems.
but when it is about me, or involves me in some significant or insignificant way, i often seem to get it all wrong, i realise only now. and that is a shock, every time it happens.
when people frown i think they are angry with me. if someone does not call back when they said they would, i think that they don’t take me seriously, or i have done something wrong and they are upset. if the telephone rings i am afraid to answer, because i don’t know what is coming. did i do something wrong? does anybody want something from me? will i be told that a friendship is over, that someone is finally gatvol [had too much] of me, and will they write me off?
none of my friends have ever fired me when they called me. they want to know how i am doing or they want to tell me something. but i cannot trust that knowledge. because surely one day they will get tired of all my issues and tell me it is over. subclinical, is it?
phones are dangerous. answering them puts me on the spot and i have to deal with it then and there. and i am not there, then.
it is a well-known fact in the aspie community that we struggle to understand and express how we feel in the moment. i have to think about how i feel. there are many feelings at the some time about every conceivable thing. when people ask me how i am, i wonder what they mean: do they want the “good, thank you, and you?” or do they really want to know? and if they want to know, what do they want to know and how much? i can keep them quite busy for a while! how do i feel generally? i don’t know, because generally i feel many things about many things. at the moment? about what- the lockdown? work? if my headache is better than it was yesterday? about my life compared to others who are worse off than me? the state of the world? so i search in my mind, think for a while, and usually i say, “oh, i think i am ok”. and that comes over as not so ok. as if i am never happy (i am seldom just happy). and then i think now they will think that i am ungrateful, and always have something to kla [complain] about. sy is n klakous. [she is a complain-sock]
but it is just that i don’t know how i feel, or which of my many feelings they want to know about exactly, and i need time to figure out an answer, that will be appropriate for the moment. and if it takes a but too long to respond, it is not a good omen. they want you to be happy and positive. i assume.
even the headache question throws me: is my headache bad enough to call it a headache? is it enough to lie on my bed and rest, or do i just take lots of pain meds and get on with the day? is it better than yesterday, or worse? i don’t know, because i cannot say with 100% certainty that it is better. but when i say i don’t know then i sound like a hypochondriac. because, clearly, if you cannot say if your headache is better or not, then surely it cannot be worse. (side note: it can.) when doctors and physios press somewhere and ask if it it hurts, i don’t know. yes, it does. but is it bad enough for a yes? and then something else is hurts more, does that mean that the other hurt was not so hurtful after all? “on a scale of 1-10 rate your pain.” no, no, no, don’t give me that one. i don’t know! it depends. in comparison with what? how other people rate it. i don’t know how other people rate it.
but when i had really, really bad pain for a couple of years, i told the doctors it is really sore. 9/10. but i said with my usual in control sounding voice, and my deadpan face, which did not match the 9. so nobody believed me. i needed to sit and cry in the one doctor’s office after after months of trying to convey to him how bad the pain was (it was a spontaneous crying). his response, “oh, i did not know that it was that bad.” but i told you so for months!!
incidentally, when i go to dentists, gp’s, specialists, i usually cry as soon as i get in. even if it is just for a normal check-up. now i know: the anxiety and emotions are just overwhelming, and i don’t know that, but my body knows it and i cry. then people ask if i am depressed. yes, i have been depressed most of my life, but that’s not the issue why i am here. i am here because i have shingles, need an insurance-type of check-up/ because i have flu, or just because. because i am sitting in the vulnerable position in a doctor’s office. and then i think they think that i want to get sympathy, think i know better – that’s an offence, by the way. often i do know better, because i have some medical background, i have google and i live in my body. i also have family and friends who are doctors who i often ask about things. i will indulge in this topic in another blog. watch this space.
i always worry about the planet and what we do to it, and about how i am contributing myself by using single use plastic, and how many face masks and plastic gloves will now end up in the sea during and after this pandemic. billions. billions!!!!! it frightens me. but when someone asks how i am, that is perhaps not what they want to hear at that moment? for a long time (most of my life) i felt upset that i cannot spontaneously just say, “thanks, i feel wonderful!” i am still upset, because it would be so nice to be able to do that.
i experience ASD as a Disorder of Spontaneity. Capital Letters, because i am in my head all the time. i think about all my actions and feelings. can i say something now, or wait for a better moment? how will it come across? is it stupid? how do i look, is the way i am walking ladylike enough? how does one walk ladylike? i wish i were a bit more “ladylike”, except that i don’t even know what that is, exactly. i wish i had a naturally friendly face.
when i was in grade one there was a girl who was in grade three, who walked around with a naturally smiling face. for long time i practiced to have a smile like hers. it did not work. even when i thought i smiled mildly, i looked in the mirror and did not look like her. i could not even detect any smile at all. a visible smile felt fake and was too much of an effort. so i gave up trying to look like her.
when someone walks down the street should i ignore or greet them? if i greet, do i have to smile or can i just nod my head? when i look them in the eyes, at what distance do i do so, and for how long? when i don’t, is that rude? should i wait for them to greet and then only greet back then? should i cross the street and avoid them? can i just ignore them? can i greet them without making eye contact? or just making quick eye contact and then look away? if i smile, will they think i want something from them? (no, usually not, but you never know), and start a conversation? and then what? will i make them uncomfortable when i greet them? perhaps they want to be ignored.
at a food market i always got instinctively angry when people offered me an olive to taste. or a piece of cheese. i can see that i can taste because the things are there in a little dish with toothpicks. so don’t tell me! it feels as if they want me to like their product and buy it. of course that is exactly what they want. it is called marketing. but i feel manipulated: if i like the olive how can i then not buy some? i don’t want to get upset, but i do. i want to be able to take it as a friendly invitation to taste something, a free offering. (and yes, of course i taste things when they are for free 😉 but not if someone is pushy.
only now do i understand my strong reactions to these “harmless” interactions. for my system it feels intrusive, my affective empathy finds it difficult to say “no” to somebody who is desperate to sell their stuff. as the understanding of my own ASD-alexithymia penny drops, sloooooowly, i can now go to markets and test whatever is there to taste, say to the person selling their fudge that it tastes wonderful and walk on. sometimes, at least. i still feel angry, when someone is pushy, but now know, at least, why.
why can read context for others well, but not mine? i don’t understand why I don’t understand. i consider myself to be emotionally quite literate. it is a shock, and a revelation to learn about my alexithymia. it is one of many “aha” moments on this journey. and one of the most difficult to live with. this is the beast that is alexithymia: I feel something, but because I cannot identify and name it i cannot deal with it, not in the moment at least. because dealing with it means to be with the feeling, allow it to stay or pass or do whatever feelings do. when i don’t know what I feel it does not exist in my head and I blame myself for being lazy (when exhausted or overwhelmed), being “overly sensitive”, crying “without reason”, not crying with reason (at a funeral, for example), and so i could go on.
i have spent too many years in therapy trying to figure out what I am feeling, what i want, what I need. i have tried until very recently lying on my bed, for hours, trying to “get in touch with my feelings”. now i just lie on my bed, trying to allow myself to do that without feeling glisten to podcasts and so that my brain does not get stuck in endless loops of trying something that is not working.
i write about things to make sense of what it is i am or was experiencing, trying to figure out what is my feeling, and which one belongs to someone else. am i anxious or do i pick up someone else’s anxiety? am i tired because i experienced so many people’s emotions in my office, or because i did not sleep well?
i am upset with my many therapists who did not realise that i really did not know what i felt most of the time. when i said i think i am perhaps a bit sad”, they said, “i don’t want to know what you think, i want to know what you feel!” and i felt horrible and incompetent and non-compliant. and then i learned to say other things. things they liked more. i told them how i felt- except i did not, because i did not know, or did know and was ashamed of it, and worried what they would think if i told them that
i want to apologise to all my clients to whom i have responded like that over many years! it’s like asking a blind person (who masks so well that you don’t know that they are blind), what colour they are seeing at the moment. and when they answer, “i think i see red” and the response is, “i don’t know what you think, i want to know what you see!”
ja, ja. subclincial personality construct…
NOTES FROM THE EDGE 