Alexithymia and Autism - A neurotypical’s attempts to understand the neurodivergent world

Scenario 1

I am so embarrassed and horrified said J’s mother of her autistic teenager. Last night, we were celebrating Dandiya in my colony. Unfortunately, one of my neighbors had a heart attack and passed away. All of us were sad and remorseful. But my daughter-her focus was so different. I couldn’t believe it; she was angry that the Dandiya party was disrupted.

What is wrong with her? I don’t get it, the mom continued. My daughter is the school topper, she is the class monitor, her delayed language development and restlessness is a thing of the past. You should see the beautiful essays she can write. But this behavior- I don’t get it.

Scenario 2

A young mother of a 4-year-old child telling the therapist, Mere bacche ko bilkul dar nahin lagta…my child has no fear.

Scenario 3

I did not cry at Andy’s funeral. He was my best friend; infact he was my only friend. I cannot grieve my best friend…the only one who understood me. I feel no sadness; I must be bad.

Cut to ten years later, at Andy’s death anniversary; the Autistic protagonist of the novel The Bride Test …talks about attending the event…...feeling the entire time as if he is missing something. I walked around thinking I had forgotten something. There was an emptiness inside me. It was MUCH later, that it hit me – I was missing Andy.

(Paraphrased from the novel by Helen Hoang, an Autistic best- selling author)

Alexithymia – an Introduction

If you are a professional working with Autistic or a caregiver; it is important to understand Alexithymia. (40-60) % of Autistic are Alexithymic.? Many of us would have come across the scenarios; described above. My attempts to understand them led me to Alexithymia. Alexithymia, originating from Greek words; literally means…. having no words for emotions. It is not a disorder. It is a personality trait characterized by a difficulty in recognizing, identifying and describing one’s own emotions. 10% of the general population is Alexithymic.

Difficulty in recognizing the bodily sensations that emotions evoke

What does it mean – an inability to recognize their own emotions? There is a physiological response within the body, but they are unable to label it for what it is. Think of the challenge some neurotypicals have in understanding hunger. Many catch themselves saying- make sure the boss is not hungry.…he gets into a foul mood then. Children take a while to understand their own physiological needs for food and water. Until they can articulate their needs, they often get cranky because of their unmet needs. What is happening in these scenarios? The body sends out a physiological response- perhaps a growling stomach or a feeling of low energy- which one does not recognize for what it is- and does not take the necessary action to correct it- resulting in an anger response. The reverse is also true- if one does not appreciate the body’s signals of satiety or fullness, one would overeat.

Experiencing emotions differently from Neurotypicals

Some Alexithymics may experience emotions differently from neurotypicals (NT). For example, the physiological responses that are evoked within NTs when they are angry, may not be the same in Alexythymia. I see red when angry, this could be the actual experience of some Alexithymics. They could have a colour and not a response such as heart beating faster or sweaty palms when they are angry.

Shutting down due to overwhelming emotions

Another example, most NTs would smile/ laugh when happy…in some Alexithymics… emotions (irrespective of whether they are positive or negative emotions) could result in internal chaos…a feeling of being totally overwhelmed by the emotion- almost as if being swamped by a giant wave. This may result in a shutting down, to cope with this overwhelming emotion.

Delayed recognition of the bodily sensation

While some Alexithymics find it difficult to label the feeling that they are experiencing, others can do so- much later…. they report of finding it difficult to process the emotion in real time, as was in the case of Andy.

Alexithymia and Autism – Lived Experience?

To try and appreciate this personality to the best of my ability; I read a lot of theory, literature on the topic and spoke to a late diagnosed Autistic adult A about her lived experiences. A is a designer, married, pet parent and runs her own business. This is what she had to say about her emotional life.

Sadness – I do not feel sadness like neurotypicals. I realized this quite early, as a child. I would see others being sad, tears would roll down their eyes. I experienced none of that. Instead, what I felt was numbness and anger.

To fit in, I started masking. I would watch others around me and try to copy them. Then, people will know I am sad, I thought

I am not someone who cries... I recollect the first time I cried was when I was 28 years old, and we lost someone close to us. When I saw the dead body, I felt extremely dizzy; my BP shot up to dangerously high levels. This triggered anxiety and I started crying non- stop. Not because there was sadness but because I was anxious. There was no sound of my crying – just tears rolling down my eyes. The hospital wanted to start me off on heavy dosage of BP medication, but my mother- knowing of my Autism- decided not to start the medicines and helped me to bring my BP down.

Now, (after years of therapy) I have begun to experience sadness. When I learnt to recognize anger and say I am angry…. I feel my brain made the space for me to feel sad. I try to recognize the signals my body sends when I am sad. It is a sensation I feel in my chest and my throat. I feel pain in my throat and behind my ears. I also feel like sleeping a lot. Today, I know that this is how I experience sadness. I still don’t cry easily. I have taught myself to put on some sad music so that it can trigger the crying. I understand now that it is important to release my sadness and not have it bottled inside me.

Anger-My response to anger is sadness. I go quiet and tears roll down my cheeks. My face is flushed, I clench my jaw, and I feel numb. I hear a beating/ throbbing sound in my ears. There is pain behind my ears. For the longest time I felt weird talking about it because I knew most people do not experience anger the way I do. It was very confusing for me until I got into therapy.

Happiness- When I am happy, I talk a lot. I over share, I speak much faster than I ordinarily would. The corner of the eyes, where most people get crow’s feet from smiling, hurts a lot. I get anxious when I am happy. There are physical symptoms like palpitations, an actual feeling of discomfort. I could get a stress headache- my cheek bones and temples ache. The situation could get so overwhelming for me that I shut down- visually and auditorily….so that I can cope.

Fear – I do not feel fear even today. When confronted by a situation that might be fearful- I act out of impulsivity. I get into action mode. When faced with a toxic work situation, for example…. I did not have any fear of the repercussions of quitting my job. While most NTs would have thought it through, perhaps continued until they had a safety net/ a fall back option – I just quit.

Growing up- as a Neurodivergent

I realize, now that my anxiety is related to growing up without being understood. As a child, I would get hyperactive when I was happy. I would want to move around and run a lot. However, I was taught to suppress my restlessness. I was not allowed to express my feeling openly- the way I experienced them. Over time- the fear of the pain, the suppression of my natural emotions resulted in build of anxiety. The constant masking, try to be the person that I am not- also took a heavy toll on me, emotionally.

Fear of rejection, wanting to conform

I was always fearful that my parents would reject me, not accept me for what I truly am. This is why I was masking all the time. I was 18 years old when it dawned on me that I was different from the others around me. I had no way of knowing why, at the time.?

?How Therapy Helped

Therapy has increased my awareness of my body. I am vigilant about my body’s responses. For example, when I am trying to calm down…. I hold my breath…. forgetting to breathe…so much so that I begin to choke. My hand starts paining. Now that I am aware, I remember to breathe. I recognize today that I unwind differently from other people. When I lie down to sleep, I force my shoulders to relax, I move my legs constantly against the bedsheet and that is relaxing for me.

The author’s reflections as a Speech and Language Therapist –

It is important to delve into the nuances of neurodivergent profiles-to help us appreciate the depth and range of diversity.

It is important to help families to start thinking of neurodiversity and work together to create safe spaces for ND individuals. Validation of differences is critical, so they feel more confident about opening up.

In the early years, we need to be mindful when we talk to children about emotions. We cannot assume they are experiencing emotions in the same manner as we are.

We need to give them the appropriate vocabulary to understand themselves, remaining open ended and curious about the child’s experience. ?

All individuals do not relax in the same manner. Each body functions differently and it is up to me as a therapist, to help children figure out what works for them.

?Even though I have been (almost obsessively reading and learning for several months now) educating myself-implementation will require unlearning and learning afresh. This is only the tip of the iceberg as far as neurodiversity is concerned. The spectrum is so vast and varied and Alexithymia is just one such. Really listening to what the individuals are telling us through their action, behavior and words will be the guide to helping them, understanding their world a little more.

Advocacy is critical. Those who understand, or work with it or live with it- we need to talk more about it.

Final thoughts

1990s was the period when Dyslexia was better appreciated and we started to understand that no child is lazy or dumb, this is the period when we are beginning to understand that weird, vague and such labels need to be dropped completely. There are many different worlds within worlds. Listening to the voices of Neurodivergent is one way to start appreciating another world better. Acceptance, Validation, Advocacy, Safe spaces are powerful words with potential for great impact.

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Useful Resource-

https://www.kelly-mahler.com/what-is-interoception/interoception-and-alexithymia/

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