top of page
Search

Lost for words: What is Alexithymia?

Please note: In all blog posts client material is fully anonymised.


In my role as an advocate I often join families in attending multidisciplinary team meetings. One such example was a clinical team meeting for long standing client John, an autistic/ADHD 16 year old, and his parents.


The general feeling of the team was that John was making good progress in many ways, however, he had a continued issue with self-regulation that seemed incongruent with other areas of his development. John seemed to struggle disproportionately with emotional expression despite his capacity for intellectual self-awareness. With this in mind, I asked the team, “Could it be alexithymia?”. The clinicians in attendance agreed, given the situation, this was something to explore.


After our meeting John’s mum said to me “What you said to the team summed up what happens with John when he gets overwhelmed and how our conversations break down, even with all the strategies we have learned.”


ree

John’s parents had been clear, their neurodivergent son could be so articulate about so many things, eloquently acknowledging his frustrations as well as his passions. However, when it came to John's emotions there was often a feeling of disconnect they could not understand. To John’s parents this was not about a lack of language per-se, but it was as if John genuinely could not identify what he was feeling. They recognised this dated back to early childhood; somehow there were always parts of his inner world John simply could not express. For everything from anger to happiness, fatigue or hunger, this articulate young man could be at a complete loss for words, making constructive discussion around navigating emotions incredibly difficult.


John became increasingly confused over time as this inexplicable difference became apparent to him. Having been quite out-going when he was younger, John started worrying that his difference between himself and others might rear its head in the outside world. This left him anxious as his responses to emotional situations seemed so often misunderstood.

Whilst John was able to sustain his connection with friends through online gaming where he felt safe from judgement, he was still lonely. Although the social communication needs of his neurodivergence had long been understood, John and his parents felt instinctively that there was something else at play. They could see this was not about the anticipated neurodivergent issues of missing social cues or misinterpreting metaphorical language. John’s difficulty seemed to lie in understanding his own emotional state.


So what resonated with John's parents?


I suggested that given the ongoing levels of compassionate and caring support I knew this young person had received from his family and clinicians over the years, maybe it was not simply that John found it hard to access the words he wanted to express his emotions. Maybe we could consider that he genuinely did not know how he was feeling at a given moment which, in turn, would make navigating conversations around emotion nigh on impossible for him. Perhaps it wasn't that John was holding out or shutting down but that he could not identify and distinguish between the different sensations in his body which are the construct upon which our understanding of our internal worlds are built.


So, what is Alexithymia?

ree

The word alexithymia comes from the Greek:

'a' meaning lack

'lexis' meaning word 

'thymos' meaning emotion



When used in a clinical context, it refers to an individual who has difficulty identifying and individuating bodily sensation which, therefore, makes it extremely difficult to recognise or express an emotional state. This difference of brain - body connection makes it extremely difficult to develop the language needed to communicate 'feeling states' such as:


ree

  • happy

  • sad

  • angry

  • frustrated

  • embarrassed

  • frightened


It is also important to understand this does not just effect emotional expression but also makes it very hard to tune into one’s body generally. If you have a hard time identifying bodily sensations, this will also make it hard to differentiate practical physical states such as:


  • hunger

  • feeling hot or cold

  • feeling tired


This capacity to tune into and understanding our body sensations is called ‘interoception’ and it is here that the issue for those with alexithymia lies.



So what happens then if we are unable to develop a clear association between physical sensations and what they mean in terms of what is happening to us physically or emotionally? Without this link that most of us take for granted, it is very difficult to develop a working model of some aspects of one's internal self. Further, there is then the issue in how one deploys feelings of empathy even if the capacity for this is present and strong. In essence:


If I have a hard time knowing I am hungry, it will be nearly impossible for me to recognise intuitively when someone else is hungry.


If I have a hard time recognising when I am sad, it is extremely difficult to identify intuitively when someone else is sad.


It is not that I do not care, it is that I do not know!


While, of course, the process of matching a sensation in the body with the language of emotions is a linguistic developmental step for us all, for those born with alexithymia this struggle persists throughout life. 

It is extremely important to understand this is NOT to be confused with a lack of capacity for emotion or feeling. Not at all. This is more akin to trying to empathise when someone is speaking in a foreign language and you cannot decipher the words or extrapolate any meaning even though the wish to understand is there.

Although there is a fair bit of debate around the causal origins of alexithymia, there appear to be some broad points of consensus:


It is generally accepted that there is 'primary alexithymia', meaning you are born with this difference, and 'secondary alexithymia' meaning something has impacted life to an extent where the brain has responded by closing off the connection between body and mind.


It is also broadly agreed that, regardless of cause, there is a neurological profile associated with the condition . “A meta-analysis of neuroimaging studies suggests that alexithymia may be associated with reduced activation in a number of brain areas associated with emotion processing, specifically the amygdala, mirror neuron system related brain regions, the dorsomedial prefrontal cortex, and the right insula and precuneus". Research also suggests that there is much higher prevalence of alexithymia in the general population then one may think. It is estimated that up to 1 in 10 people may struggle to some extent with alexithymia.


A further point of consensus, which is particularly relevant in my work is, given the sensory processing difference associated with autism, it may not be surprising to hear that prevalence in the autistic population is significantly higher. Some researchers stating this occurs for 1 in 5 (20%) autistic people, whilst other sources put the rate significantly higher at 50 - 60%. In either case, it is clear to me that the presence of alexithymia is significant and, as such, whilst it is often acknowledged by professionals in clinical conversations, over time I have become increasingly aware of how infrequently this important area of discussion makes its way into the wider care system around children and young people.


A final point, which despite the agreed likelihood that this issue is not as uncommon as one might think, "alexithymia is not an official mental health disorder listed in the DSM-5" which means "there are no set guidelines or criteria that must be met to diagnose the trait." As this leaves a level of subjectivity that can be extremely problematic when looking for clinical certainties to guide treatment, I am inclined to think it is for this reason that professionals may shy away from raising this issue more often .


So, although this topic is clearly vast, what can we do to help our neurodivergent kids?

Speak to a professional:


In the UK, alexithymia is typically identified by mental health professionals such as psychologists, psychiatrists, or clinical therapists who specialise in emotional and psychological assessment. These professionals have the training and expertise to conduct comprehensive evaluations.


The evaluation process for alexithymia may involve:


  • A clinical Interview: The clinician will conduct a thorough interview to gather information about emotional experiences, including perceiving and expressing emotions.

  • Psychological Assessment: Standardised questionnaires and psychological tests may be used to assess emotional awareness, expression, and related factors. One commonly used measure for alexithymia assessment is the Toronto Alexithymia Scale (TAS-20).

  • Medical Evaluation: A medical evaluation may be conducted to rule out any underlying physical causes or comorbidities that could contribute to emotional difficulties.

  • Observation and Behavioural Analysis: The clinician may observe behaviour and interactions to assess emotional responses and expressions in various situations.

  • 'Collateral' Information: Information from family members, caregivers, or other individuals may be helpful in providing additional insights.

  • Multidisciplinary thinking: Speech and language therapists and occupational therapists typically play important roles as part of a multidisciplinary assessment team.


Once identified, individuals with alexithymia can receive appropriate support and interventions to help them understand and manage their emotional experiences more effectively.


There are some wonderful resources designed to help those managing alexithymia better understand the nature of their difficulty and what they can do to manage it.

Some find an emotion map can be a beneficial tool as it offers:


ree

  • Visual representations: An emotion map provides a visual representation of various emotions to offer more concrete conceptualisation.

  • Reference Points: An emotion map serves as a reference point for individuals with alexithymia to identify and label emotions. When one experiences an emotion but struggles to recognise or articulate it, one can refer to the emotion map to help label the feeling.




This brilliant video from 'Mom on the Spectrum' Taylor Heaton, shares how the use of an emotion map was a transformative experience for her.




An emotion wheel can be an effective tool for individuals with alexithymia as it:


ree

  • Categorises representations of emotions: The emotion wheel provides a visual representation of different emotions, categorising them into primary and secondary categories. This visual format can make it easier for individuals with alexithymia to conceptualise and understand emotions, which may otherwise feel abstract or confusing.


  • Shows relationship between emotions: The structured layout of the emotion wheel organises emotions into distinct categories, making it easier for individuals with alexithymia to navigate and identify their feelings. The wheel provides a framework that can help them make sense of their emotional experiences.


In his poignant article 'How to Use ‘Wheel of Emotions’ to Express Better Emotions', Faraaz Dhuk shares his personal childhood story about how his therapist helped him learn to understand alexithymia and navigate his emotional world.


Dr. Megan Anna Neff 's website, Neurodivergent Insights, is also a great source of practical information on a wide range of topics including alexithymia. For more information on alexithymia find her blog post and the workbook she created to support alexithymics.


As is so often the case when working with young people, curiosity is key. Whatever the underlying issues may be, when children and young people are lost for words, it is important to consider and make sense of this in the very best way we can.



REFERENCES:












 
 
bottom of page