Alexithymia & Autism: When you don’t know what emotion(s) you are feeling

By Dr. Fakhri Shafai, Chief Science Officer, AIDE Canada

SF Walker, Autistic advocate, Manager of Voices of Autism

1. What is alexithymia?

Tina is an Autistic woman in her 30’s who has had interpersonal, professional and romantic relationships but something she struggles with is understanding her feelings. This is evident in all of her relationships where she is considered logical and practical and not led by her emotions. While she is highly practical and logical, Tina is a very emotional person and without the ability to describe what she is feeling, this had led to misunderstanding and conflict in all of her relationships from her earliest interactions with peers.

Alexithymia is a term used to describe the difficulty some people have in understanding and describing the emotions they are feeling. Alexithymia was first described by the psychotherapist Peter Emanuel Sifneos in 1973. Translated from Latin, the term literally means a “lack of words for emotions”. Some other challenges related to alexithymia are difficulties recognizing bodily sensations, expressing emotions, and a thinking style that focuses on external experiences rather than inner experiences^1-2. Some early models of alexithymia also included challenges with imagination and daydreaming as part of the diagnosis, but research in the last decades has not supported these inclusions¹. Previous research has shown that roughly ten percent of the general population have high levels of alexithymia³. Alexithymia questionnaires are often included in research studies conducted with people who have diagnoses like depression, anxiety, and more recently, autism, as co-occurring alexithymia can influence other traits that are often measured in these studies.


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2. How is alexithymia related to autism?

When Tina was just being diagnosed, her doctor noted that she seemed to struggle with being able to describe what she was feeling. Her teachers also noted that Tina would often begin to cry during independent work and she could not identify why she was crying. Tina would often cry if there was a change in routine such as when there was a substitute teacher or the students had to stay inside for recess when it was raining. Tina didn’t like to be in the rain but she could not express why it made her stomach hurt and her chest so heavy that she had to stay inside.

Alexithymia has been assessed in studies of Autistic people since the 1990s, but the bulk of the research has been in the last ten years. One of the earliest studies looking at this connection relied on self-reported symptoms of alexithymia and estimated that 40-50% of all autistic people also met the criteria for alexithymia⁴. A more recent study of Autistic adolescents reported that 55% of the adolescents had high levels of alexithymia and also had challenges with anxiety, emotion recognition, social cognition, and sensory processing differences⁵. However, there are some questions as to whether these high levels of alexithymia are true of autistic people in general, as only those capable of filling out questionnaires were included in these samples (this means that the roughly 30% of autistic people with co-occurring intellectual disability were not represented in these studies).

Other traits associated with autism, like sensory processing disorders and restricted and repetitive behaviours, may be higher for Autistic people that also have high levels of alexithymia⁶. For autistic people that also have a co-occurring mood disorder like anxiety and/or depression, higher levels of alexithymia traits and emotion regulation challenges have been found to be associated with worse mood disorder symptoms⁷. Another study found that autistic adults with higher levels of social-communication challenges and anxiety and depression also had higher levels of alexithymia⁸. Alexithymia has also been shown to be related to social competence in Autistic children⁹. Taken together, these studies indicate that the more challenges an autistic person has with recognizing their own emotions or the emotions of others, the more likely they are to struggle with other aspects of behaviour, communication, and/or mental health conditions.


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3. How does alexithymia impact social interactions?

When she was in the third grade, Tina had trouble making friends; she often felt lonely and misunderstood, but she didn’t know why.When Tina was with her classmates, she felt excited and scared, happy and sad, hopeful and doubtful. She didn’t know what to expect from them as her emotional outbursts only received ridicule. Tina experienced a great deal of isolation because she did not know how to enter a group conversation or activity once it had begun. Tina spent her time observing her peers and trying to mimic their actions and reactions. This struggle was most evident in direct interactions between Tina and any of her peers; Tina could not recognize expressions of emotion when simply looking at a person. This often led to bullying and more misunderstanding as she would laugh or smile at socially inappropriate times.

People who have challenges knowing how they are feeling inside can find it difficult to understand and respond appropriately during social interactions. One challenge that comes from not being able to recognize your emotions is that it can be difficult to know when you are upset. Especially as many people with alexithymia struggle with an inability to perceive negative emotions¹⁰. If you do not know that you are angry, then that internal stress can build up until you have an emotional outburst.

Alexithymia impacts more than just your ability to recognize your own emotions. Recognizing other people’s facial expressions, especially negative expressions like fear and anger, can also be a challenge, which can also lead to difficulties when interacting with others¹¹. If you do not notice that a person is upset or annoyed during a conversation, then you may not be able to change the topic before the person lashes out at you.


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4. How is alexithymia related to attention?

The attention-appraisal model of alexithymia was proposed to explain why people with alexithymia have challenges with recognizing and expressing their internal emotional state. In this model, there is a four-stage sequence that a person goes through when presented with an emotionally charged stimulus: situation-attention-appraisal-response¹². When the situation is an internal emotional reaction, a typical person will pay attention to the internal situation, appraise it to decide what emotion it is and what it means, and then choose how to respond. People with high levels of alexithymia struggle with both the attention stage and the appraisal stage¹³, meaning they have challenges when focusing attention on their internal emotional state and are unable to accurately identify the emotion and what it means in the context of the situation.


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5. How is alexithymia related to interoception?

Recognizing internal emotions was not the only issue Tina had when she was growing up. Tina also struggled to recognize signs of hunger or thirst until she experienced nausea and vomiting. This also happened when Tina would overheat. Years into her adulthood Tina would wake up vomiting every morning before work. She loved her job and couldn’t understand why on workdays she would be physically ill.

Interoception is the sensory system that allows us to know what is happening inside our body. Recognizing internal signals like thirst, hunger, and the need to use the washroom are all part of the interoceptive sensory system. Interoception is also involved in allowing a person to recognize when they are becoming agitated or upset. For instance, when a person is nervous, a typical response will be for their heart rate to increase, their palms to begin sweating, and for their mouth to become dry. Previous research has shown that those who struggle with recognizing interoceptive signals of anxiety are more likely to have emotional outbursts, as they are unable to recognize the signs of being agitated before they build up and lose control¹⁴.

It is also possible that just like with alexithymia, people who have interoceptive challenges may have trouble with the attention and appraisal stages of responding to a situation¹⁵. These research findings suggest that the inability to recognize internal body signals of any type will also impact the ability to recognize internal emotional states. Some researchers suggest that if people want to improve their emotion recognition abilities, they should focus on interoceptive skill development (see ‘What treatments or supports can help with alexithymia?’ section below for specific resource suggestions).


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6. How is alexithymia related to mental health conditions?

Once Tina was a teenager, her mental health became a bigger issue for her. She was anxious in social situations to the point that she would avoid being around others and she spent all of her time outside of school alone in her room playing with her guitar. Her parents would plead with Tina to spend time with friends, but Tina couldn't tell them she didn’t like spending time with the people that were labelled her friends. To Tina, those were stressful interactions. Tina became socially withdrawn in high school and began to avoid social interactions at school by spending time photocopying and dusting for teachers. These were tasks that were easy to understand, and the result was always a “job well done”; this was easier for Tina to navigate.

Research has shown that several mental health conditions are associated with alexithymia traits:

Depression: One of the most studied connections between alexithymia and mental health conditions is major depressive disorder (MDD), where those who have the most challenges when describing their feelings also show more severe depressive symptoms¹⁶, including suicidal ideation¹⁷. This connection is especially strong for people who experienced aversive childhood experiences^18,19. One interpretation of this connection is that people who struggle with emotion recognition and regulation also have challenges feeling connected and supported by the people around them, which may feed into feelings of isolation and depression.

Anxiety: While there have been multiple studies that have looked at the relationship between alexithymia and anxiety, many of them have focused on different aspects of anxiety or different anxiety disorders. For instance, some studies have looked at the association between alexithymia and social anxiety disorder, while others have looked at generalized anxiety disorder^20,21. Regardless of the type of anxiety or specific anxiety diagnosis, the general trend in studies on this topic is that the more alexithymia traits that person has, the more likely they are to also have challenges with anxiety²². It is possible that having a history of negative social interactions due to challenges with recognizing emotions in others can lead a person to develop anxiety and avoidance of others.

Other Mental Health Conditions: Alexithymia has also been studied to see if there is a relationship with other mental health conditions. Studies have shown that people with obsessive compulsive disorder (OCD) have higher rates of alexithymia²³.

Other conditions that are associated with alexithymia include post-traumatic stress disorder (PTSD), various personality disorders, and schizophrenia/schizotypal disorders²⁴. While these conditions show a relationship with alexithymia, it is still unknown which begins first – the mental health condition or the alexithymia, or it may be possible that they feed into each other during development. More research is needed to determine exactly how alexithymia impacts, and is impacted by, co-occurring mental health conditions.


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7. How is alexithymia measured?

Before explaining the different alexithymia questionnaires available, it is important to discuss what makes a questionnaire ‘validated’. Validated questionnaires have been rigorously tested on many people and the researchers have performed statistical analysis to compare the findings of that questionnaire against other gold-standard questionnaires that already exist for a specific topic. This important step is done to identify and eliminate any bias that may be in the new questionnaire. The validation process may take years as it is usually done first with people in the general population so changes can be made before testing it with clinical populations. Most questionnaires are designed for a specific age group. Some questionnaires will be validated for one age group before being altered and validated for a different age group. Questionnaires that are not validated should be interpreted with caution as they may not produce accurate estimates of alexithymia traits.

Most measures of alexithymia used in scientific studies are self-report questionnaires, the most widely used one being the Toronto Alexithymia Scale (TAS-20)²⁵. This validated, gold-standard questionnaire includes 20 items and asks participants to rate their level of agreement from 1 (strongly disagree) to 5 (strongly agree). The TAS-20 has three subscales that measure Difficulty Identifying Feelings, Difficulty Describing Feelings, and Externally Oriented Thinking. The higher the score, the more alexithymia traits a person has, with a score of 61 or above being considered high levels of alexithymia. Despite being the most widely used alexithymia measure, there are some criticisms of the questionnaire. Researchers have raised questions as to how reliable the Externally Oriented Thinking subscale is and whether the total scores are consistent enough to be used as a clinical measure¹³. This is a paid, copywritten questionnaire meant to be used by researchers, which means we cannot provide a link to the questionnaire here.

The other most widely used questionnaire in research on alexithymia is the Bermond-Vorst Alexithymia Questionnaire²⁶. This is a 40-question self-report questionnaire that includes five subscales: Difficulty Identifying Feelings, Difficulty Describing Feelings, Externally Oriented Thinking, Difficulty Fantasizing, and Difficulty Emotionalising. As mentioned in the introduction, the ability to imagine or fantasize is no longer included as a common trait in most models of alexithymia¹, so many researchers do not include this subscale when analyzing results. Additional criticisms of this measure are that it does not include enough questions focusing on recognizing both positive and negative emotions and that the Externally Oriented Thinking subscale does not reach reliability standards for use in research ¹³. There is no online version of the test for you to download, however the questions and data structure have been archived on the National Institute of Health (NIH) website. If you click on this link and scroll down to the line that starts with “bvac1”, the 40 questions are listed below. You can keep track of your rating on a scale of 1 (“This definitely applies”) to 5 (“This not at all applies”). Total scores below 43 suggest the absence of alexithymia, while scores above 53 suggest the presence of alexithymia²⁷.

More recently, the Perth Alexithymia Questionnaire was developed by a group of experts in Australia based on the attention-appraisal model of alexithymia described above¹³. This questionnaire has 24 questions that provide five different subscale scores: Negative-Difficulty identifying feelings, Positive-Difficulty identifying feelings, Negative-Difficulty describing feelings, Positive-Difficulty describing feelings, and General-Externally oriented thinking. All five subscales are combined to provide an alexithymia composite score, where higher scores indicate more alexithymia traits. This questionnaire has been validated for the general population but is still in the process of being validated for clinical populations. However, the authors suggest that the average score is 81.97 for adults in Australia, and they are currently considering a score above 112.88 as indicating “high alexithymia”¹. The full scientific article is open access (meaning anyone can download a copy) and includes links to the questionnaire and scoring guide in the appendix at the end.


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8. What interventions are available to help with alexithymia?

A number of possible interventions for alexithymia have been studied in recent years. Below we list the ones with the most evidence for improved emotion recognition:

Interoceptive Training: As mentioned above, alexithymia and interoception are closely linked. Some research has suggested that focusing on interoception skill development also improves the ability to recognize internal emotions²⁸. A group that was led by Autistic researchers in Australia created a curriculum for elementary school students to help develop interoceptive skills and found that there was an 80% reduction in the number of students sent home at the end of the year, indicating that students were better able to regulate their emotions and behaviour after practicing interoception skills in school²⁹. AIDE Canada worked with one of the lead researchers, Autistic author and advocate Dr. Wenn Lawson, to turn this curriculum into an Online Interoceptive Training Course for all ages.

Mindfulness Training: Mindfulness is the meditative practice of focusing your attention on what you are feeling and thinking without judgement. It often includes breathing exercises, guided meditation with imagery (e.g., being on a beach or in a cave), and progressive tightening and relaxing of muscles. Previous research has shown that mindfulness practices can help with alexithymia³⁰. Mindfulness and emotion regulation are also closely linked³¹. AIDE Canada’s Self-Regulation Toolkit was developed with researchers at Western University and includes several practices you can try at home.

Cognitive Behavioural Therapy (CBT): Cognitive Behavioural Therapy is a widely used intervention that has a great deal of scientific evidence to support its effectiveness for a variety of challenging conditions³². However, some studies suggest that CBT is less helpful than Dialectical Behavioural Therapy (DBT; see below) for some Autistic people (see below)³⁴. CBT treatment largely focuses on thinking patterns, such as recognizing unhelpful thoughts and behaviours and understanding the motivation behind them. Patients are encouraged to develop strategies to cope with difficult situations, face their fears, and learn how to prepare for stressful interactions with others. AIDE Canada’s Library has Taking Off the Mask: Practical Exercises to Help Understand and Minimise the Effects of Autistic Camouflaging by Autistic author Hanna Louise Belcher where she combines lived experience, scientific research, and practical advice for CBT and other approaches for improving mental health.

Dialectical Behavioural Therapy (DBT): Dialectical Behavioural Therapy is based on CBT but puts an emphasis on emotional regulation and social skills. DBT has shown promise for improving alexithymia traits³³. Originally developed as a treatment for borderline personality disorder, DBT has also been useful for Autistic people who do not respond well to CBT³⁴. DBT is usually done in a group setting with a trained mental health specialist. The AIDE Canada Library has The Neurodivergent Friendly Workbook of DBT Skills available to borrow, which was developed by Autistic author Sonny Jane Wise.


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9. Additional Resources:

Books:

While not the primary focus, alexithymia is discussed in specific sections in the following books (available to borrow from the AIDE Canada Library):

The Autism Couple’s Workbook by Maxine Aston

Working with Autistic Transgender and Non-Binary People edited by Marianthi Kourti

Toolkits:

AIDE Canada’s Treating Mental Health Conditions in Autistic Individuals: A Toolkit for Understanding Approaches to Mental Health Care

AIDE Canada’s Sensory Processing Differences Toolkit

Videos:

AIDE Canada’s Interpreting Social Situations Interactive Video Series

AIDE Canada’s Peer Advice Video Series

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10. References

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