Autism and alexithymia are two things you might see discussed in tandem quite regularly. In fact, Vaiouli and Panayiotou (2021) found a strong postive correlation beween Autistic experience and alexithymia with Kinnaird et al (2019) finding a prevalence rate of nearly 50% among Autistic people. Considering the very high rates of alexithymia among Autistic people, it is necessary to think about how this might contribute to issues in healthcare settings where professionals are largely trained in non-autistic expressions of emotion.
Alexithymia (according to the Merriam-Webster dictionary) is the inability to identify and express or describe one’s emotions. In other words, an alexithymic person experiences emotions in a way that means they struggle to attribute the internal sensations to descriptive language. It is subset of interoceptive differences which is discussed by Adkin (2023) in relation to their concept of “Meerkat Mode”.
This obviously presents issues with accessing support for our mental health. How can we explain our struggle if we can’t put it into words? Professionals often take us less seriously because if it was “that bad” we would be able to voice our suffering. Unfortunately it is not as simple as this. Even in my own experience, I often struggle to feel the difference between emotions like anxiety and excitement. Happiness and sadness also feel similar to me, and exhaustion is something I often can’t recognise until I am at the point of crisis.
This is a significant enough issue to face as an Autistic adult, but it happens to Autistic children as well. We regularly see Autistic people turned away from services such as CAMHS because they are in no way equipped to help us. Children are naturally less adept at describing emotions, especially the big emotions, and when you throw alexithymia in on top of that it leads to a breakdown in communication that can have life threatening consequences.
I have found myself at multiple points in my life being administered medication that I did not need because the ways I have learned to articulate my very abstract feeling emotions have been misunderstood (accidentally and willfully) by psychiatrists. We live in a world that pathologises our suffering, meaning that we can face horrific side effects to treatments that we might not have needed had professionals been culturally competent with regards to mental health in Autistic people. Tanya Adkin and I have written about the importance of competence previously (Gray-Hammond & Adkin, 2023).
I often ponder on the relationship between my early experiences of not being able to communicate my emotions effectively to professionals and my subsequent years of a drug and alcohol addiction. Honkalampi et al (2022) found a positive correlation between alexithymia and substance use, which in my opinion may indicate a mechanism behind the findings of Weir et al (2021) showing significantly higher rates of self-medicating with recreational drugs among Autistic adolescents and adults. In fact, one of the primary drivers behind my drug use was having control over my emotional experience. I would hazard a guess that drug use is so common in the Autistic community because it allows us to feel a familiar and more easily described feeling.
It is clear that alexithymia is a significant issue for not just Autistic people, but also for professionals working in healthcare and wellbeing practices. The links between alexithymia, poor access to mental health support, and risk taking behaviour are clear. It’s necessary for professionals working with Autistic people to find ways to help Autistic people articulate their emotions rather than to just ignore us or belittle our struggles.
Our lives depend on it.
Adkin, T. (2023). What is meerkat mode and how does it relate to AuDHD? https://emergentdivergence.com/2023/06/06/what-is-meerkat-mode-and-how-does-it-relate-to-audhd/
Gray-Hammond, D., & Adkin, T. (2023). Creating Autistic Suffering: Autistic safety and neurodivergence competency. https://emergentdivergence.com/2023/04/11/creating-autistic-suffering-autistic-safety-and-neurodivergence-competency/
Honkalampi, K., Jokela, M., Lehto, S. M., Kivimäki, M., & Virtanen, M. (2022). Association between alexithymia and substance use: A systematic review and meta‐analysis. Scandinavian Journal of Psychology, 63(5), 427-438.
Kinnaird, E., Stewart, C., & Tchanturia, K. (2019). Investigating alexithymia in autism: A systematic review and meta-analysis. European Psychiatry, 55, 80-89.
Vaiouli, P., & Panayiotou, G. (2021). Alexithymia and autistic traits: associations with social and emotional challenges among college students. Frontiers in Neuroscience, 15, 733775.
Weir, E., Allison, C., & Baron-Cohen, S. (2021). Understanding the substance use of autistic adolescents and adults: a mixed-methods approach. The Lancet Psychiatry, 8(8), 673-685.