One of the things everyone agrees on when it comes to ASD, is that we all have a lot of difficulties understanding and being a part of any social interaction. We have all seen the stereotypes on TV and in movies, or maybe we’ve read books where a character is on the spectrum. Often, in these cases, the character with ASD is used as a comic relief, someone who does odd things and then we can laugh about it. It is rare to see the struggle within that character, and even more rare to see that character both battling their own inner issues as well as being the main character with strengths and weaknesses alike. I think, perhaps, that people don’t understand the pain someone on the spectrum can feel.
Our struggle is often ridiculed and treated like people like me have no feelings at all.
I don’t mind making fun of myself and my mistakes, I don’t mind looking at this challenge in humorous way. I mind when people forget it’s not only a joke – when they forget it is real. I mind when we are treated as beings who cannot feel.
We feel, we all do. We may not express our feelings in a way so that others, even others like us on the spectrum, can relate to or understand, but we feel none the less.
My emotions can seem childlike in their expression, because when I feel I either feel very strongly or I barely feel at all. It’s like my world is neutral with bursts of intense feeling. Imagine everything is black and white, but some things or people are in full and intense colour. It’s not a perfect way of describing it, but my point is that everything is not necessarily black and white for people like me.
My world can fall apart because there’s no coffee in the vending machine where I always get my coffee, but it doesn’t always. It’s like a cup you keep filling up – at some point it’s going to spill.
I don’t understand why neurotypical people always talk about putting people in boxes and how it helps with living life. In my mind’s eye I see people literally putting other people in cardboard boxes, and I know it’s not what they mean when say it, but to me it is just as silly. You can’t put people in boxes, because they won’t fit.
Interaction is difficult for all of us. We all cope in our own way. Most of the stereotypes center on aggression and people who act out. That’s not all of us. The rest of us you don’t see or hear. We hide in plain sight, suffering in silence and on some level, many of us are begging someone will notice and help us. The world we see is confusing and strange, and fight with every fibre of our being not to be noticed.
They hardly ever do, because we learn from early childhood how to mimic what we see around us. I say we learn, but it’s more of a conscious choice to survive. And just because you don’t see us, it doesn’t mean our suffering is less than those who act out. We are all just human and we all need acceptance and understanding.
Many times, when I tell people about my Asperger’s they don’t believe me. Like many others before me, I played my part too well. Those moments are amongst the most painful of my life.
Feelings are so very difficult for me to understand and describe. Maybe that’s the reason so many people over the years have called me cold-hearted. They expect me to be able to describe my own feelings as clearly as they obviously feel they do. But when I can hardly understand my own feelings enough to describe them in a meaningful and simple way that others can understand, how can I convince you that I feel at all?
I think people might not understand just how difficult communication is to me. People communicate and interact with each other almost as effortlessly as they breathe. I don’t. I mimic them.
I have always been like this. I can’t remember not doing this, and I know it might be difficult to understand, but this I how I process social interaction – both before and after.
Before meeting someone, and it doesn’t matter who, I practice conversations mainly in my head. Sometimes, and by sometimes mean daily, I practice conversations out loud to myself as well. The other people I imagine talking too are people who are known to me in one form or another, and I never speak their sentences out loud. Only my own, because I am practising my lines, not theirs. I go through many, many topics in my head every day. I have to do this, because when I meet someone else, I say things I’ve been practising. I don’t make things up in conversations.
I read, listen to audiobooks, watch movies and TV shows and play RPGs to expand my knowledge on social interaction. I remember both sentences, words and phrases and context. Context is very important, because I often make mistakes and use sentences in the wrong context. When that happens, I simply apologise and apologise, until the other person forgets. I learned quickly that as long as you apologise, people don’t care. In fact, I have probably apologised too often many times, because if I’m unsure if I made a social faux pas, I apologise. When people seem to expect something from me and I don’t understand what it is, I apologise.
Not only that, I also observe people. Whenever I’m out, whether it is alone or with someone else, I am constantly hyper-aware of the people around me. I listen, I analyse, I watch body language and note the context of the situation. I group together sentences with a positive response with other sentences that had a similar positive responses in the past, negative with other negatives and so on. I have huge internal register of sentences and previously witnessed social interactions, both from the world of fiction and the real world, that I draw upon when preparing for any social interaction.
It’s a lot of work.
I will always have prepared more conversation topics than it is possible to go through in one encounter, because that way I can adjust my part of the conversation without being too limited.
The more I know someone, the more difficult it becomes. You probably thought it would become easier, didn’t you? Well, no, quite the opposite.
When I meet people I barely know, I can prepare a variety of different topics that can apply to several different people. I don’t have to be too specific in my preparations and I can often even rely on conversations I have not only practised before alone, but on conversations I’ve had with people in the past. That way I can adjust my part of the conversation even more, because I will have practised it over and over again since I was a teenager.
The problem with long term friendships is that people remember what you’ve said before. Well, sometimes. Not always. I have successfully used the same practised conversation several times with the same person – I just have to wait for them to forget. And they do, even if I don’t.
Another issue is that the more you know people, the more specific the topics of conversation have to be. They have to express a certain level of intimacy, which is really difficult to produce in advance. I try, I work very hard on practising conversations that express that special level of intimacy between people, but that means the topics sentences I prepare are less varied and often much more limited in their flexibility. It’s difficult to adjust that kind of previously studied conversations when the situation demands it.
That’s probably the reason why I am often likeable at first but seem incapably of remaining friends with a person over a long period of time. I have struggled so hard, not to make friends, but to keep them. I don’t know how to do that.
If there’s a lot of people, it is even harder. I have to keep track on all conversations I personally participate in at the same time. I need to know who might have heard me say something, and make sure I don’t say it again near them. That way, people don’t discover how much I repeat myself. I need to analyse all conversations, not just the one’s I am a part of, but also the ones I might be asked to participate in. I need to prepare my sentences in my head, not just for one conversation, but for all the conversation I might or might not become a part of.
Before, I would be very social and, in that way, cut my conversations down to a bare minimum, moving around at a party continuously and always have a quick way out. When people get drunk, they don’t remember or think logically. I used that to my advantage. I drank just enough to stay aware and be able to analyse the situations around me, but enough to numb my intense social anxiety. I could gradually relax more as people became more drunk, but I could never fully relax. I was always in a state of suffering. Always playing the part I thought they wanted.
It can be no surprise that I am extremely tired after any social event. I am often in bed the next day, sleeping and relaxing – recharging my brain for the next battle.
Oh, did you think my hard work stopped after the social interaction and that I’d just be able to start preparing for the next conversation? In that case, I am sorry disappoint. I work very, very hard especially after any social interaction, but in a different way.
My memory when it comes to conversations is quite good. It has to be for me to survive.
After any social interaction, I replay conversations in my head. I use the conversations I’ve had as templates for future conversations. I can replay conversations in my head innumerable times over the course of a single hour, a day, weeks, months or even years. That’s right. I still replay and practice conversations that I’ve had years ago in my head today. I evaluate my use of body language, words, phrases and most importantly my understanding of context.
Context is truly the most difficult thing to get right, and when it goes wrong, it goes horribly wrong.
I used to create different variations of myself, depending on the place and the people who were there. I would adjust myself, my words, my clothes, my makeup, my general appearance and the conversations and even my interests to fit into the environment in question.
You have to understand, neurotypicals can interact intuitively with each other. I can’t. I analyse a given situation and come up with a coherent response, just like you solve a maths question.
My behaviour was a practised character, a mask to hide my true self. It was as much an act, as any actor who performs on a stage act their character.
It doesn’t mean that I don’t care, or that don’t feel, not at all. It means I am desperate to connect with other beings. It means I feel isolated even surrounded by people. It means my heart is breaking when I finally take off my mask, and people refuse to look at me, but continue to recognise only the mask. I feel like they are trying to pretend I only was my mask and that the real me doesn’t have a right to exist.
When people call ASD a disease, it feels like they are saying my personality and who I am has no right to be. That they would rather have someone else wear my skin, speak with my voice and live my life.
I think if people knew just how much work goes in to any social interaction for me, and for people like me, perhaps they could treat it not only as a joke, or as someone with a disease, but also as a human being. A human being, who is different, but not less.
