The curse (and bliss) of misunderstanding and being misunderstood
Do you find some fictional characters, like Sheldon in BBT or Lisbeth from Girl with the Dragon Tattoo ‘peculiar’?
Have you ever heard of Asperger’s syndrome?
Do you think you know what it is?
Well, here you can cross-check your beliefs with the reality.
Disclaimer: This story is based on a single subjective perception of the reality and it is not representative of the diverse community of people on the autism spectrum.
Like a mascarade
Try to imagine a situation where you would walk around people wearing masks on their faces. You would not be able to see if they smile, laugh or cry and distinguish between these emotions. In a very simplified analogy, this is what I experience every day. You might think: ‘it must be obvious when someone cries’. Yes, it is, but instead of jumping to the conclusion that the person is upset, I would make a sequential analysis of why it might be so. I would conclude that there are so many possibilities, from pain to possible life crisis, that I cannot make this conclusion myself. What distinguishes me from you is that I would then go and ask that person why they are crying. Even after receiving a reason for being upset, I would be clueless about what to do to console them. I would stare in hesitation for a few minutes until remembering that in movies people stroke each other. I tried it the other day, tapping my friend’s shoulder. It didn’t work, and the friend sent me away. I have to work on further optimisation.
A second side to this is that the very same people cannot read me. I tend not to express emotions or make them obvious. I am not sure if it is because it seems like a waste of energy to me, or it is because I was encouraged to hide my emotions when I was a child, because they were considered inappropriate. I get upset easily and a simple small talk about weather might stick in my mind for an entire day. I would be thinking ‘why the hell did you come to talk to me — is there anything you were trying to imply by this that I am not getting? what do you want from me? and why would you tell me meaningless information that I already know?’ constantly, not being able to let go because I don’t understand the reason behind these interactions. Fortunately, I discovered noise-cancelling headphones that I wear nonstop during the day, filtering out unnecessary information that my brain would be processing for an entire week.
Thanks to this inability to read other people, my journey is a life-long story of constant misunderstanding. From daily misunderstandings with cashiers in a supermarket (thank god for self-service machines!), to more serious misunderstandings with officials and academics. I had a policeman, porters in my College and different people in the position of power yelling at me for reasons I still do not understand. On one of the best occasions, a girl asked me in rage ‘So you say I am a bully?’. I, naively, thought that she wanted to confirm that she got right what I said. I nodded ‘Yes’ with zero emotional expression on my face. You can imagine what blast followed…
Simply put, I cannot read people and they cannot read me.
The painful finding that I am ‘different’
You might think it must have been obvious to me or people around me that I was different the entire time. The truth is that, I spent 23 years mastering the art of camouflaging. I would rationally observe groups of people, trying to identify the patterns of what they say and when they smile, I would study non-verbal communication. The whole irony of this is that my mother, who teaches non-verbal communication, has a daughter utterly unable to comprehend intuitively any of it. I realised that when I used to correct teachers in class at school (with my best intentions, because they were teaching something incorrect to the rest of the class), they would lash out at me. Then, I observed that another classmate also used to correct teachers, but these were always kind to her. I mimicked whatever she did, this is how much I wanted to survive a day without someone being nasty to me.
This camouflaging comes at extreme costs to any girl with Asperger’s syndrome. It is the constant feeling ‘on watch’: how should I appear and how should I say things in order not to get spotted again, bullied again. It is also very painful not to be allowed to be myself. You might say ‘well no one forces you to’ — but this is implied by the society. It unconsciously punishes people who lie outside of the ‘normal’ range, whose behaviour is slightly ‘odd’. You all must have heard people, maybe did it yourself, thinking ‘ah that person is a little weird. I better avoid interacting with them’. This means constant social exclusion that is not my choice. I love being around people and even though I don’t understand them and often get tired by having to decipher what they mean, I really enjoy people’s company. Not always the same people will want to have me around.
Society tends to accept more those who behave according to the pre-agreed conventions. Being different is a threat to the established social structures.
All this time trying to fit in, mimicking ‘normal behaviour’, I felt I SHOULD be happy and actually, I really wasn’t. This was until two years ago, when I was diagnosed with Asperger’s syndrome. A counsellor at one point asked me bluntly ‘do you think you might have Asperger’s syndrome?’. I laughed and said ‘fair enough that you suggest that, but I don’t think so. These people don’t have empathy’. She said: ‘not girls, Asperger’s in girls is different’.
That day, on the way home, my whole world collapsed. 23 years of the painful and constant trying to fit in and trying to nail behaving as a ‘normal’ person have just turned on me. I was told that I will never fit in, I will never be normal. I felt like a failure. Thanks to my best and only friend at the time, he helped me to see that as a relief, finally knowing why I felt different the entire time. He worked with me trying to focus my attention on the positives rather than what I perceived as countless negatives of being autistic. I am eternally grateful and loyal to him for being there for me in that very moment.
It hurts me to even write this, because everything people ever tried to convince me about the way I behave, still resonates with me. ‘You will never find friends’, ‘no one will ever like you like that’, ‘you are mean’.
Now, I would go and tell them ‘it is very mean to say something like that to someone. You are the mean one’.
Who decides what is ‘normal’ and what is ‘different’?
And that brings me to the constant judgment in the society. I am being judged every day based on the misperception of myself by others. When, they don’t know what’s going on in mind and why I do things the way I do. This is called Theory of Mind — we only act based on a projection of other people, not their real selves because they only share a portion of who they are with us. What I find a real shame is that the people who judge me don’t even try to understand where I am coming from. Instead of trying to understand what I mean by a blunt statement, I am considered rude. Instead of understanding that I am sensitive to sensory stimuli like loud and unexpected sounds and harsh lights, I am considered ‘abnormal’ and ‘unreasonable’. On numerous accounts, when I went to ask people to be quieter, I received a very angry response. When, on the other side stands a person from the autistic spectrum, extremely upset because of the sensory stimuli her brain cannot filter, and on top of that, stressed by the unavoidable social interaction in order to make the situation better. I am being judged without even being given a second chance for explanation. And when I give it, the people not just ignore it, they might even use it against me.
For some reason, there is a socially pre-agreed package of a ‘normal’ person. In my view, people are like a Gaussian distribution and no one is normal, just most people lie in the average range. I still don’t find it a sufficient reason for considering the outliers wrong.
Going from acceptance to finding people who like me for who I am
Since knowing the reason for being different and that there is nothing wrong about it, I re-built my life only to include people who accept me for who I am and who take me with all my perks. This had a drastic starting point, from talking to a single (already mentioned) friend, a Tutor, and a counsellor. I pretty much owe my current life to these three people. In two years, I am finding myself having multiple intense friendships with people I would have never hoped interacting with, who are on the opposite scale of being sociable to me. I found a workplace with a very accepting atmosphere and an employer who does everything to support me. Through dancing, I found extremely lovely people who for some reason don’t mind me hanging around. I fell in love with someone who I admire and respect hugely and I find Him great.
Nowadays, one of my most painful struggles is with the person I love. I realised that He can read my every emotion, when I feel happy, upset or anxious. Even though I display emotions in a different way (I might flap my hands when I am excited or hide my face into His clothes when I feel shy), by now He can read me better than I do myself. However, often I fear I have no way of reading Him. I wish I would be able to predict what might make Him happy, or upset, why that might be so and try to help Him. I think I am most worried of the scenario when He would stop being interested and I would not realise. However, I would like to stress here how amazing He is in that He communicates extremely clearly to me. There is nothing I cannot say to Him or that He would consider stupid or socially inappropriate. I cannot stress enough how much I value Him for that. Sometimes, we have brutal honesty going on between us, to the point that most other people would be offended. He is not just fine, He prefers making no assumptions. For the first time in my life, I feel appreciated and loved for who I really am instead of trying to pretend to be someone else.
Most of my life, I was led to believe that it is my social incompatibility that would prevent me from having friends and romantic relationships.
Now I just know I was looking in the wrong places.
I feel like I have only started living since I made this change. However, I still carry a lot of misperceptions of myself implied onto me by the society. This means I have to constantly face self-doubt and my worst fears. Because of my inability to read people, I used to wonder ‘Do they really mean it when being nice to me?’. I could list countless accounts of being disappointed and used by people. This is because I used to make a cardinal mistake, I assumed the best in people and that everyone would be as kind and well-meaning as me.
Now, I still believe in the best in people, but I accept that they might have a wrong perception of me leading to mistreatment. I end up feeling sorry for such people. Anyone who doesn’t bother checking with me why I do the things I do, doesn’t just behave stupidly in my perception. I think their life experience must be so much poorer if they are not willing to be open to diversity within the society.
Overall, I think it is a bliss to live like an aspie (having Asperger’s). I am not overloaded with the massive amounts of information floating in daily lives. Even though I spend most of my day trying to decipher the interactions that happened to me, 90% escapes my attention. Most of the life events that would have brought other people to their knees, either blissfully escaped my attention, or they had a minor effect compared to what other people would be able to handle. I have no clue when people are annoyed with me and frankly, by this point, I don’t care. I have learned that I haven’t done anything to upset anyone on purpose and whatever I do, I do with my best (and uttermost naive) intentions. I understand that most of the time, this will very likely annoy you.
Last note on how I would imagine my world
I live in a world that is very far from being optimised to my needs and to how I behave. Therefore, for fun, I thought I would include how I would imagine my world (and how I used to think other people work :) ).
In my world, people would be kind towards each other. Never selfish, never having bad intentions or hurting anyone. People would be honest, even at the threat of being politically incorrect. In my ideal world, people would only say something only if they have something valuable to contribute with. They would have extremely strong sense of moral right and wrong. They would be very loyal friends.
You might want to say (and righteously): ‘classic Sheldon’.
Please don’t judge people just because they are different
I cannot stress enough how much I advocate for not judging people based on pre-agreed social expectations. Just because someone is different, it doesn’t mean they are defective. Whether it is at a cognitive or physical level, their sexuality, political or religious beliefs. The very same people you judge today, might surprise you tomorrow.
If you see me waving a hand at you, that’s because I don’t know how to say hi and where to look, or I find it too much to look into your eyes. If I am crunching my clothes, I am very puzzled and don’t know what to say and how to react. When I wear a t-shirt saying ‘Go away’ and walk looking at the floor not saying anything, I am not rejecting you as a person. My brain’s capacity has been fulfilled and it is on a verge of a meltdown — which if why I try not to overload it with meaningless ‘Hi’ and looking at faces when it can wait. When I jump up and down, that is very obvious :)
Just because I behave differently, it doesn’t mean anything changes in my relationship to you. You can always ask (preferably via texts).
I live my life as a puppy trying to navigate blindly in a social landscape that I will never learn. And that is fine. I, as everyone else, have my own bubble. And sorry if I tell you something socially inappropriate. Frankly, I don’t care.
I would rather convey what I want to say in an inappropriate manner, than stay silent.
This story is meant to be a tribute to the outsiders of the society.