As I mentioned briefly in my first post, most people would say I am extroverted, loud, confident, and most noticeably, I always smile. I can almost guarantee if you were to see me, I would be smiling. I smile when I am happy, excited or surprised. Appropriate I hear you say. But my smile gets wider when I am nervous, anxious, angry, frustrated, sad or scared. And only recently, since my diagnosis, have I fully understood the reasons behind this…
As a little girl, my direct approach in life was not appreciated. I was termed ‘bossy’ by peers and their parents alike. At the time I couldn’t understand why I was left out of playdates and friendship groups. In my head, standing up for a child who was taunted by another that the portrait of her mother she had drawn in Year 2 was ugly, seemed the right thing to do. I may not have been able to cuddle her, as I barely coped with hugging my parents, but to stand by and watch silently made me no better than the child hurling the cruel comments. So, at seven I felt it was my duty to firmly inform the child that her comments were hurtful and unnecessary! As you can imagine, this ended badly with a tearful child, to whom no one had ever stood up to before, and a complaint against me. I was pulled into the teacher’s room with no enquiry as to the chain of events, just a conclusion, that I ‘was obviously the rude and nasty one and showed no remorse due to the grin on my face’. This was ‘not the way to make friends’ the teacher had sternly scolded me as she marched me off to apologise. Understandably, she was further infuriated by my smile during the apology, assuming I was ‘insincere and did not care for the pain (I had) inflicted with my words’.
After multiple similar incidents, where I truly believed I was doing the right thing but reprimanded without being asked why I had embarked on my words and actions, I concluded that I didn’t understand people. I learnt that it was best to stay away from my peers if I wanted to avoid getting in trouble. I spent my breaks performing roles like library monitor or tidying up the music room, alone. I was warned to keep my nose out of other people’s business, which I interpreted as ‘step away from visible injustice’. This, I was not as successful with!
I tried my hardest to still do good but there were times when my frustrations got the better of me! Like the time I kicked another child, not hard though I’d like to add . To be fair I had asked her three times to leave me alone, but she kept poking at me and finally rubbed my doodle off the white board during break. This time I was sent to the headmaster. Oh no, I knew I was going to be in trouble at home, not only for kicking but also for smiling during my telling off!
That was when I started to question my smile…
As a young child, I realised that a smile could make other people feel comfortable, warm and welcomed which made me happy. I’m not sure when this epiphany came to me, but I do remember my parents constantly beaming at me when they stated that my smile would light up any room. Teachers commented on it in my reports. Every school parents-evening would not be complete without mention of it. As time went on, my smile became my trademark. It was the only facial expression I had truly practised and mastered. However, when the same smile started to add to my woes, I developed a strategy to stop the smile. Realising the impact my toothy grin had on adults under certain circumstances, I would pinch or scratch myself, causing pain. This meant I would just about manage to refrain from looking like a Cheshire cat, although I would be left with red marks along my hands, arms or neck (or wherever I decided to induce pain). As you can imagine, this definitely was not a healthy pattern and difficult to explain to my parents when they discovered the marks. Focusing on the pain in such situations only worked in part. An undesired side effect was that I apparently ‘appeared to be staring into space’ which equated to elders as ‘not listening’. I was honestly trying so hard to do the right thing but hadn’t yet stumbled on the correct formula.
Eventually, through the pain of not being understood, I observed others my age and copied their behaviours, communication and actions, in a hope to fit in whilst not compromising my own values. I learnt to ‘mask’ (mentioned in more detail in my previous post) and I would say I am pretty good at it - considering I was able to hide from numerous teachers, doctors, counsellors, a psychiatrist, an educational psychologist (previous to my recent diagnosis) as well as, my family and friends.
Since being given my diagnosis, I truly comprehend the origins of my smile. Learning and harnessing the ‘power’ of my smile allowed me to hide my feelings during social interactions when I felt overwhelmed and uncomfortable. My smile became my go-to, allowing me to avoid awkward conversations, fool those I was with and hide how I really felt. My smile was so much more than an expression of happiness. It was my armour and my default. Throughout my life to date, a smile was simply the camouflage I hid behind.
Having a diagnosis has helped my family, friends and teachers understand me better. A smile does not mean I am fine- in fact, it can mean quite the opposite. For myself, this knowledge is helping me learn how to express myself. I am having to explore my emotions more closely. Previously, a shift in emotional state felt like a non-specific uneasiness. I perceived this ‘uneasy feeling’ in the same way, whether I was experiencing something funny, embarrassing or sad. I am learning now to recognise this as an aura to an underlying emotion and so proceed further in analysing what the actual feeling beneath is. I haven’t yet lost the smile-for-all-occasions but am a step closer to deciphering when I need a different facial expression that is recognisable by others and understood by them as congruent with my emotional state. This will be essential for sustaining my current relationships and in building new ones, and even more crucial with my desire to pursue a career as a doctor.
The inability of individuals to fully comprehend feeling is known as alexithymia. This term was first introduced to psychiatry in 1972 by Peter Sifneos, literally meaning a = lack, lexis = word, thymos = emotions, hence the translation as having no words for emotions [Psychiatric Times, 2000]. The lack of understanding about what was going on within would previously overwhelm me. As I became older, when the sensations came over me, I started to have physical symptoms; my heart would race, my stomach would churn, a wave of nausea would pass over me and I would feel hot and cold at the same time. Having read and discussed this with others I can now attribute these signs and symptoms to the anxiety. Pre-diagnosis, my parents would ask me questions to help both them and me. They wanted to understand so they could ‘support me’ they would say but, in all honesty, I didn’t have any answers. I couldn’t understand anything past a sensation that something bad was about to happen. My parents would try to reassure me. It started to happen so often that my mum could pick up on it before I had even opened my mouth. She told me that she could see it happening in my face and body language.
We tried meditation, yoga, a counsellor, psychologist and even a psychiatrist until I had enough – literally me screaming “ENOUGH!” in the middle of the clinic. I remember the car journey home from the last appointment. My mum says that for her, that was when the penny dropped. She realised that she just needed to accept me as I was, when I shouted that I didn’t have the problem she did. To be fair, my parents never tried anything but to understand. It was just that everyone believed I was stressed, anxious maybe even depressed, when all I felt was misunderstood, but once again I didn’t know how to express that. The solution? I have been advised to learn emotional literacy so I can express myself more easily and to minimise miscommunications.
I am now working on understanding my ‘feelings’ when the wave comes. I try and decipher what emotions they may represent using the collateral information on what happened just before, who was involved, what was said, etc. Although it is harder to demonstrate and explain how I feel due to being autistic, this does not mean that I cannot empathise with others. In actual fact, I would say I am more aware of feelings than most other people I know (from watching, copying and masking).
A common stereotype is that autistic individuals are unable to empathise. Poor social and emotional development can result in a lesser ability to understand and comfort others, miscommunication and misreading situations leading to inappropriate responses. However, this is not always the case. I disagree with this myth. I think I read others well, whether they are happy or sad, I seem to know. When I reflect on the past, I think I’ve always been aware of emotions in other people. If a child was hurt, I would escort them to the nurse. If someone was distressed, I would alert an adult. If my siblings were frustrated with me, I knew, although I didn’t always agree! The point is, I could recognise emotions in the people around me despite not being able to recognise my own feelings so promptly. Initially, I tackled situations in my own direct way until I realised that my way didn’t always resolve and comfort the distressed. I may not have been equipped to deal with what I saw but I knew that I needed to alert someone who could manage the situation.
Just like the saying, don’t judge a book by its cover. Don’t judge a person solely on the expression on their face, regardless of whether they are neurodivergent or neurotypical, there is almost always more to the story.
Thanks for reading,
nidhi :)
References
Cinyee Chiu, 2017. The social ties between Autism and Schizophrenia. Spectrum News. Available at https://www.spectrumnews.org/features/deep-dive/social-ties-autism-schizophrenia/ [Accessed July 26, 2020]. (source of cover image)
Psychiatric Times, 2000. When a patient has no story to tell: Alexithymia. Available at: https://www.psychiatrictimes.com/view/when-patient-has-no-story-tell-alexithymia [Accessed July 26, 2020].
Cover image: Aad Goudappel. Available at: https://aadgoudappel.com/sort/work/
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