Most people know when they are feeling a certain way. They can identify that certain feelings in their bodies indicate certain emotions. They would recognise if they had butterflies in their stomach and would understand that this meant they were feeling nervous. But what if you didn’t know what you were feeling and why? Imagine the confusion you would feel.
The concept of alexithymia was introduced by Sifneos in 1973. The term itself literally translates to “no words for emotion” in Greek. In today’s language, this means that someone has difficulty identifying and describing the emotions that they are experiencing. Although some non-autistic people have alexithymia, it is much more common amongst autistic people. In-fact, recent research by Kinnaird, Stewart and Tchanturia (2019) found that only 4.89% of the non-autistic people in their sample had alexithymia, compared to 49.93% of autistic people. This makes sense when we consider the difficulties many autistic people have with understanding emotions, processing what is going on in their bodies and identifying different bodily needs.
Alexithymia is closely linked with interoception, the ability to identify, understand and respond to the state of the inside of our body. For whatever reason, many autistic people struggle with this. It’s this interoceptive awareness which allows us to feel things like hunger and thirst, and identify whether we are hot or cold, if we need the toilet and if we are in pain. Difficulty recognising these needs can make our daily lives much harder to navigate.
Everyone who experiences alexithymia will have varied experiences. Some can feel specific emotions, but struggle with certain ones. For example, they may find anger or sadness very easy to identify, but may be unable to feel or recognise what happiness feels like. Some understand that they are feeling something, and may even be able to tell whether it is a positive or negative emotion, but are unable to pinpoint the emotion itself. Additionally, emotions can get confused with each other. For example, in the past I have felt anxious, and only later realised it wasn’t anxiety I was feeling, but excitement. As you can imagine, struggling to identify these emotions can be really frustrating.
If you think about it, an emotion often produces a need. If I am sad, what I need to feel better is to curl up under my duvet and have a bit of a cry, then move on. If I am happy, what I need is to stay in that situation and enjoy whatever it is that is making me feel happy. But, if I did this when I was angry, without me realising it, the emotions could build up and I could have an outburst. What I need when I’m angry is to leave the situation temporarily. As you can see, not recognising or understanding the emotion being experienced, means we can’t deal with it effectively, and over time this can cause problems with emotional regulation, interpersonal effectiveness skills and relationships.
Alexithymia isn’t only about recognising emotions though. It can also be about how we experience the emotion. It can be hard for us to match our body language or facial expressions with the emotion in the way we are expected to. We may have to intentionally act out our response, remembering that if we are happy, we have to show it through our face. You know the myth that autistic people don’t have emotions? That’s why it exists. Because some of us don’t portray emotions the way we are expected to. But, this doesn’t mean we aren’t feeling anything. Many of us often get asked why we look angry or sad, when in-fact we are happy. Or we may be asked why we look happy when we are observing something sad. Ensuring that our outward self reflects our internal emotions, even when we struggle to know what these are, takes a lot of work, and it can leave us exhausted.
It can also be hard to interpret other people’s emotions, which can cause difficulties in our relationships. I have a tendency to look at someone’s face and think they are angry, even if they’re just concentrating. I look at a facial expression and I just see a face. The emotion doesn’t come with it. A study by Geoff Bird found that usually people with alexithymia can tell that there is a difference between photos of someone smiling and someone frowning, but they can’t tell which photo is of them smiling and which one is of them frowning.
Whilst alexithymia can cause a lot of difficulties, I have also found it to make me less judgemental. Because I struggle recognising facial expressions, I always ask how someone is feeling, rather than assuming. This tends to open up a more honest conversation. However, alexithymia also means I struggle knowing what my needs are, which makes it much harder for me to get my needs met. This is where I may need some support!
Emily is a Trustee of Autistic Girls Network and, as a young autistic woman is a passionate mental health activist and autism advocate. You can find her blog here or join her 29k strong Twitter following.