Love, hate, whatever: How I feel about Alexithymia

Who says autistic people can't do sarcasm eh?! Seriously though, as with many aspects of neurodivergence and difference, alexithymia is a misunderstood if not unknown concept that can be fairly common in Autistic people, including me. For this blog, I consider how alexithymia has both helped and hindered me as a person and also as a social worker and how it can be supported when working with trauma.

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What is Alexithymia

Alexithymia (Alex) and I have had a relationship all my life. So let me introduce them. They are a part of my processing which means I can't always identify and explain how I feel. This can include emotions but also aspects such as pain. How I experience it is that I am aware of something happening to me in a physiological sense but then a large barrier shuts down in my processing chain and I can't translate that experience into contextual language, internally or externally. So I default to my easy-to-access files to try and define and explain what is happening to me. It's like a flow chart of process options is activated and at times takes a very interesting path. What then happens it can either be I get some very puzzled looks when I try and explain to someone else what I am feeling, or my brain just shuts down and communication needs a reboot. But the feeling, emotion, and experience carry on.

So, basically, I can feel ( and can feel a LOT) but I can't share that with you in a way that you may understand the nature, intensity or locus of that feeling.

Alexithymia is not a fixed thing, experienced in the same way for everyone. However, like autism, it has variations so some people may have more anomia (lack of words to express emotion) than agnosia (difficulty identifying their own emotions) or vice versa. Alexithymia has been associated with complex trauma, depression, Parkinson’s and Dementia as well as autism so there’s probably a lot of us who experience Alex to some extent.

There are quite a few studies on Alexithymia, many relating to health issues and psychoanalysis but none have pinned down the cause and helpful approaches appear devoid in the research. Though there are many accounts, insights and guidance relating to Alex within the Autistic community and I will now add mine!

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Things I think I hate about Alex

I know I experience emotions. I feel them intensely. I just can't categorise them beyond strong feelings if you ask me what they are. I feel incompetent, inferior, and, given my profession, an imposter of the highest kind. How on earth can a social worker not understand feelings?

Except I think I do. I know when someone is experiencing trauma or crisis for example. I know when someone is engulfed by the hardest grief for whatever reason. Their pain, their anguish, their joy is channelled through to my receptors like an unspoken energy and it hits me hard, painfully, unapologetically. I feel the physical impact and it assimilates through my very being. Psychoanalysts may call it transference and attachment therapists may suggest attunement. Ironic given alexithymia has been suggested to be a deficit in both.

Music has a similar effect, as does art. I can really connect with a melody, a chord sequence or a monochrome photo. It evokes what can be immense and intense feelings resulting in tears, movements and responses that may not make sense to you.

But just don’t ask me to explain. That’s the bit I really struggle with if it's spoken. A fog of uncertainty descends whenever I am asked “How do you feel?”. It's there but just out of reach, out of sight, out of clarity. But not out of feeling.

I can present as stoic, I can't always respond in a way that tells you that I understand how you feel; or how I feel. And that can get misinterpreted either that nothing is wrong with me (feeling OK) something is wrong with me (devoid of feeling) or that I don’t care. More often than not, none of these are accurate. I don’t always know how to respond when you say you are upset but believe me, I feel your pain. My face may not tell you. I might not offer sympathetic platitudes and I will most probably not hug you. But your pain is my pain. Your joy is my joy. And all that nondetermined stuff in between.

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And what do I sort of, maybe love about Alex?

So I try and explain in other ways. I may share music with you that encapsulates a sense of what is going on for me. I may point you in the direction of some other creative thing that I think might bridge that communication and Double empathy gap. I use analogy. The beauty of words is that they can be shaped and re-defined in so many ways that offer an insight into my internal world if you take the time to look. I can identify the possible responses of others even if the exact emotion is not found but describing my own is incredibly distressing (I know that one, unfortunately).

I sometimes wonder if other languages could offer openings to my experiences. For example, if I was Japanese, would Yūgen (幽玄) be a way to communicate what I often feel (roughly "an awareness of the Universe that is too deep and powerful for words")? Perhaps. English, my main language, may have a large vocabulary but not always an emotionally expressive one.

And here’s the thing. Maybe it isn’t Alex that is getting in the way, but that age-old nemesis of the neurodifferent; indifference, apathy and bias of the normative. My communication of feeling is not spoken like you, it's not explained like you and may not even be felt like you. Because does anyone really ever feel the same way? How do we know what apprehension is in a concrete way for example? We rely on speech, on behaviour and guess what, neurotypical ones at that. We are back to the observable without seeking to understand the nuance.

And sometimes, I don’t want to know the exact feeling. Sometimes it's OK not to be able to pin down and extract to the conscious. Because that too would be painful. Sometimes the outward connection is unhelpful. Like your interpretation of my lack of “aww hun, that’s awful”, sideward head tilt, sympathetic tone of voice etc. as indifference, for instance.

In social work, my non-emotive behaviour has been interpreted as remaining calm when others are in distress. I am viewed as “level-headed” or “dependable” in that respect. I can be the stability when chaos is unbounded for a child or adult in a trauma-induced crisis. I present as the safe haven but I also connect as one too. So I am seen as contained by others in the room but I am also felt as contained by the person who needs it. A win-win. Except for me.

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Supporting Alex and me

How I am perceived depends on context, including who I am interacting with. It's all connected, related, systemic. Sounds like relational social work doesn’t it? I am modelling skills that present as boundaries and discipline. Not letting my feelings spill into the room and eclipse those of the people in crisis. I am perceived as respectful and professional in my role, getting on with what needs to be done.

It is assumed I am getting on with the day-to-day so the checking in becomes less. I can't tell you if it is starting to overwhelm so I start slipping out of the visible in terms of being cared about.

However, when I am in the office, when I am advocating for someone, when I am in a sensory crisis and my emotions spill out into the room, in my language and my responsive behaviour, I am suddenly unprofessional. I am not resilient. I am (ironically) emotional.

It is assumed I can't manage, that I require a “support plan” in a negative way i.e. if this doesn’t change, I will no longer be competent.

Now, you could argue that this is not solely an Alex thing. Our profession, social work, is not famed for recognising and responding to vicarious trauma, be it organisational or individual, so I suspect there are many social workers who will resonate with these points.

The difference here is that Autistic people who are alexithymic, often have no spaces in or out of work, where we can fully express how we feel without risk of being seen as at the “extreme” of emotional expression. It affects our relationships, our careers, perceptions of our parenting, and access to appropriate healthcare and support. It is across our lifespan and we don’t get respite.

When I can't tell you how I physically or emotionally feel, I will show you. When my response to “what’s wrong” is not speech but a flop, a flight, or a freeze, I am telling you my feelings are way too big to handle. Is it a trauma response? Maybe but maybe not. I could just simply be that I am beyond frustrated with trying to communicate what is going on inside.

So offer me ways to show you that go beyond the spoken word. Let me express in music, in imagery in our supervision. Understand the value of exploring different modes of communication. Maybe I can write you an analogy. Maybe you could offer one back. Try it – you may quite like it! It can certainly open the curiosity door in those reflective supervision spaces. You remember those, right?!

But most importantly, trust me that I feel. Understand that I am not devoid, detached or disinterested in my fellow humans, be they families who are involved in our services, colleagues or you. As with all aspects of Autistic communication, look beyond the surface, the observable and the spoken.

Assume I feel.

Believe I connect (with self and others).

Confirm curiosity in what that is like for me and means for me so you can support me in our work together.

Don’t expect me to miraculously find emotional words like it is a prize to be won or a measure of your success. That may never happen,

Ultimately remember that

Emotions and empathy are indeed a significant part of the Autistic lived experience.