When my son was eight years old, he started asking me several times a day if I was mad at him. Now technically, he meant “angry” rather than “mad,” but I never corrected him. We’re going with mad. Merriam-Webster said it was okay.
He thought I was mad when I was trying to urgently usher him out the car door to go into school because people were lining up behind us in the drop-off line (I was definitely not mad). He thought I was mad when I frustratingly asked him several times to do something, and he hadn’t done it yet (I wasn’t mad — yet).
He thought I was mad when I was mildly irritated that we were about to run out of his medicine and now had to rearrange my day to get it done urgently (I was definitely not mad at him, just frustrated with myself). “Mad” was often not the emotion I was feeling, but in his mind, he spent the entire day, every day, thinking people were “mad” at him.
At the time he was only able to decode two emotions. He knew when he was either happy or mad – and that was all he was able to detect in others as well. It broke my heart that he spent much of every day thinking people were mad at him, and I’m sure it was the root of a lot of anxiety.
What I didn’t know back then is that he was struggling with something called alexithymia. In Greek, the word literally means “without words for emotions.” It’s a term coined by Peter Sifneos in 1973 to describe an inability to understand, process, or describe emotions.
In recent years, researchers have observed a possible connection between autism and alexithymia, a personality trait characterized by difficulties in identifying and describing emotions.
In this blog post, I will delve into the link between autism and alexithymia and explore the overlapping and distinct aspects of these conditions and how it can impact an autistic person’s life.
What is Alexithymia?
Alexithymia is a personality construct that was first described by psychotherapist Peter Sifneos in 1973. It refers to difficulties in identifying, describing, and expressing emotions. People with alexithymia often have trouble distinguishing between emotions and bodily sensations, and they may struggle to understand the emotions of others. It's not classified as a mental disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), but it is often seen in conjunction with other psychological conditions.
Although alexithymia is common among the general population, it's particularly common in autistic individuals. Depending on which of the limited number of small studies available on the topic you look at, anywhere from half to as many as 85% of autistic people struggle with this, compared to 10% of the general population. This has led researchers to investigate the relationship between autism and alexithymia further.
The Autism-Alexithymia Connection
The high co-occurrence of autism and alexithymia has sparked interest among scientists. Some researchers suggest that the difficulties with social communication often seen in autism may be partly due to alexithymia. For instance, a person with alexithymia might struggle to understand why someone is crying because they have difficulty recognizing and interpreting emotional states.
Research also shows that alexithymia, not autism, predicts difficulties in emotion recognition. This suggests that some emotional difficulties attributed to autism may be more accurately ascribed to co-occurring alexithymia.
However, it's important to note that not all individuals with autism have alexithymia and vice versa. This suggests that while the two may be linked, they are distinct conditions.
How Alexithymia Affects Individuals with Autism
Alexithymia can influence the lives of autistic individuals in a number of ways, creating unique challenges but also opportunities for growth and understanding. Here are some ways alexithymia may affect those with autism.
Alexithymia often involves difficulty identifying and describing one's own emotions. For autistic individuals, this can compound the communication and social interaction challenges they already experience. They might have a hard time understanding why they feel a certain way or struggle to put their feelings into words. When someone with autism is unable to tell you how they feel, they may literally be unable to find words for their emotions!
Empathy and Social Interaction
Alexithymia can also affect the ability to understand and consequently empathize with others' emotions. This might make social interactions more challenging, as recognizing and responding to the emotions of others is a key part of social communication.
It might be harder for them to understand why someone is upset or happy, for example, and respond in ways that others expect. T hey might focus on physical cues like someone clenching their fists without linking these to the associated emotion of anger.
The struggles associated with understanding and communicating emotions can lead to challenges in forming and maintaining social connections. Emotional sharing is a key aspect of human bonding, and difficulties in this area can make it harder to connect with others.
Alexithymia can also impact others’ ability to understand what the autistic person is feeling. Researchers use a term called expressive incoherence to describe the disconnect that can occur between an individual's internal emotional experience and their outward emotional expression.
In other words, what an individual is feeling on the inside may not match what they show on the outside. For example, a person might laugh when they are feeling sad or appear expressionless when they are feeling excited.
This discrepancy can make it challenging for others to accurately perceive and respond to the individual's emotional state, which can in turn lead to misunderstandings and difficulties in social interactions.
Alexithymia can lead to difficulties in managing emotions, which can contribute to increased stress and anxiety. An autistic person with alexithymia could become more easily overwhelmed in emotionally charged situations or struggle to calm down after experiencing strong emotions.
Without a clear understanding of their emotional state, individuals with alexithymia may struggle to manage and regulate their emotions. They might not know why they're feeling unsettled or distressed, which can make it harder to find and initiate appropriate coping strategies.
Research suggests that alexithymia is associated with increased emotional reactivity in autism. This means that individuals with both conditions may be more susceptible to emotional distress.
Individuals with alexithymia often have trouble distinguishing between physical sensations and emotions. For example, they might interpret the physical discomfort of hunger as a negative emotion, leading to confusion or distress. Similarly, the physical sensations related to an adrenaline rush due to excitement, like a fast heartbeat or sweating, might be misinterpreted as fear or panic.
If a person with alexithymia is asked how they're feeling, they might describe physical symptoms rather than emotions. For instance, instead of saying they're nervous, they might say their stomach is in knots. This can make it difficult for others to understand what they're experiencing emotionally.
For someone with both autism and alexithymia, expressing emotional needs to others can be challenging. They might struggle to articulate their feelings to loved ones, caregivers, or therapists, which could make it harder for them to get the support they need.
Implications for Interventions and Accommodation
Understanding the link between autism and alexithymia can have significant implications for treatment. If a person with autism also has alexithymia, therapies focused on improving emotion recognition and regulation could be beneficial.
Cognitive-behavioral therapy (CBT) and emotion-focused therapy (EFT) are among the therapeutic approaches that can be adapted by a neurodiversity-informed mental health therapist to help individuals with both conditions.
My son had a few different interventions. He worked with both an occupational therapist and the school psychologist on recognizing the broader spectrum of emotions, but he told me what actually helped him was something I describe to my life coaching clients as “filling their database with accurate examples.”
Learning how to recognize emotions in others requires lots of practice and can lead to a deeper understanding of one’s own emotions, but it’s something that is hard to generalize from a clinicians’ office. What helped my son was working on this in his real life in real time. Every time my son would ask me if I was mad, I would very calmly explain what I was feeling and why, including content and nuance.
For example, when we were in the drop-off lane at school, and I was trying to usher him out the door so I could get out of the way for other families, if he asked if I was mad, I would say, “No, I’m just feeling a sense of urgency because other parents are waiting behind us to drop off their kids, and they can’t do that until you get out of the car and I drive away.”
When I failed to plan ahead to refill a prescription that took multiple steps over a period of days to fill, he asked if I was mad (at him). I said, “No, I’m just frustrated with myself for not planning ahead, and now I need to rearrange my schedule in order to do all the steps needed to refill it before you run out.”
It was exhausting practice that went on for months, but it worked. He’s now able to recognize a much greater range of emotions in both himself and others.
If someone you’re interacting with struggles with alexithymia, understanding that it will take them longer to process and define how they are feeling can also help. In situations where tension is high, it’s especially helpful to give them a break away from the conversation to process what they are feeling. This can take anywhere from hours to even days, so regularly revisiting the topic over time can help tremendously in working through difficult situations.
Having families, care providers, and therapists understand the implications of alexithymia is a huge quality of life issue for autistic individuals. This knowledge can help them communicate more effectively with the autistic people in their lives, accommodate their needs, and provide appropriate emotional support.
The connection between autism and alexithymia is a burgeoning area of research that holds significant potential for enhancing our understanding of the emotional experiences of autistic individuals. It’s important to remember that every individual's experience with autism and alexithymia is unique. While both conditions may overlap in certain aspects, they are distinct and may or may not co-occur in autistic individuals.
Recognizing the presence of alexithymia in individuals with autism can open new pathways for interventions and improved relationships that address the unique challenges posed by this co-occurrence. In the end, a more nuanced understanding of the emotional world of people with autism can lead to better support and improved quality of life for these individuals.
Alexithymia and Autistic Traits: Associations With Social and Emotional Challenges Among College Students, Vaiouli and Panayiotou, 2021.
Mixed emotions: the contribution of alexithymia to the emotional symptoms of autism, Bird and Cook, 2013.