The Alien Life – A Life With Aspergers’ Syndrome
Inspirational tune: Carl Espen “Silent Storm” – link to official video on Youtube
The morning is in it’s first hours. The first hesitant light of day has reached my place on the planet and the birds are beginning their wake up calls to the neighbourhood. After a day of – to me and in Denmark – a staggering 28 degrees celcius, my naked skin is soothed by a soft cooling breeze of the night that comes through my open window. Just before bedtime, I went for an ice cold shower, although I’m hesitant to do so, because I absolutely hate it when my pillow gets wet. In these early hours, I am glad I did. It makes me feel clean. Cleaner than I have for a long time. This summer has been extraordinary, going on more than 2 months with barely any rain. It does wonders for my urban garden in the city – as long as I remember to water it myself – but for me, it is exhausting my energy. I like the sun. But I really don’t care for the heat it sometimes accompanies. My skin sweast and I deeply resent that oily encased feeling it gives. It’s like my body is covered in moisturizer or sun lotion – and I don’t like that feel either, which is why I almost never use those products. But at these degrees there’s just no way escaping that sensation of greasy, sticky cocoon. But right now, I feel clean. The slight breeze soothes me, not only because it’s cool, but also because I can feel it move across my skin like a gentle, comforting hand.
I need a comforting hand right now!
You see, for the last couple of weeks, I have been escaping. The world in which you live, have become too much for me. May and June were hard months to get through and took a huge toll on me. Much bigger toll, than I will admit to my loved ones. So I escape. Currently on long term sick leave, I have the day time to myself and rationally, I know I should be getting some chores done, but I can’t. The second, my significant other leaves for work, my mind drifts, taking me to see places and meet people, letting me have long, interesting conversations with equally interesting individuals. So why not have them in real life, you might ask? Well, while some of these imaginary tours does take me to people actually in my real life, most of them don’t. A few of them don’t even exist IRL. And quite honestly, I prefer to be alone and in solitude. I often find that a lot easier and less stressful, than dealing with humans in real life – you folks are really hard to grasp sometimes!
When I was growing up, the teachers called me a daydreamer. One of them even told me that I lived too much inside my head, and too little in the actual world. He told me that my grades would get higher, if I became more present. My verbal classroom grades were always so low, that only judged by them, I would’ve been on the verge of flunking everything – but my grades on essays, or any written material, usually went through the roof, leaving my teachers puzzled as to why I did not participate more in the classroom, not even when asked. My verbal response would normally be “I don’t know”. A few teachers got a bit cross with me even, accusing me of wasting my good intelligence. That upset me quite a lot. Not only because of the conflict (at which I really suck), but also because I genuinely didn’t believe I was intelligent. I knew somehow my mind seemed to work in a different way than those of my peers, but rather than feeling like I had something to offer, it left me feeling estranged, detached – alienated. Therefore it may come as no surprice, that a lot of my childhood imaginary tours was about me, coming from a different planet and figuring out how the fuck to live life on Earth. The Alien Life! I even wrote a free style essay on that. I guess this is the long awaited follow-up!
It was a living dichotomy; trying hard as fuck to hide and yet leaving clues all over the place, probably subconsciously desperate to be “found out”. It took them about 30 years to do that: “You have Aspergers Syndrome!”.
And that, them and me figuring out, I think, was only due to the fact that I chose to tell the different psychiatrists and doctors everything – even all the things I had hidden, because I felt too embarressed. Like the imaginary tours. Like, what turned out to be what they call stimming, rocking back an forth, but only when being alone. It was full disclosure, because I was sick of depressions, anxiety, mental break downs and I needed answers.
I got them!
Oh fuck, I got so many answers, I’m still, almost a year later, trying to figure out how this and that affects me. Recollecting broken pieces of dark childhood memories and piece by piece fitting them into this huge mental jigsaw puzzle of trauma, diagnosis and personality. And it’s becoming all too clear to me that the alienated feeling throughout my life was in fact highly rational. I was and am an alien! Not literally, obviously, but metaphorically. There is a huge difference between “blending in” and “belonging”.
To you, I look like anyone else, you would pass on the street. Maybe you will see me on one of those days, where I wear one of my 50’ies/60’ies inspired dresses and in that case, I might stand out from the crowd a little bit. But in most cases, especially in Denmark, where the weather only on good summers are worth talking about (although people tend to talk about it all time anyway), you will probably not even notice the worn out jeans, the statement/Star Wars t-shirt and the well used Asics shoes (unless it Adidas or Nike). Should you glance in my direction anyway, you would only see brown and grey hair and a lowered gaze, avoiding eye contact with strangers, which eventually means that I will not notice you at all – maybe your shoes, if they are cool – or they make a lot of noise or you’re dragging your feet, in which case you will already have triggered my auditory stress levels. And if you pass too close to me, you might even for a second think I am a rude bitch, because I will pull away from you in a rather obvious manner. It’s not that you smell or I think you’re a terrorist or anything. In fact, it hasn’t got anything to do with you at all. It’s just that I need my private space and people inevitably and unintentionally overstepping it hurts. It sort of feels like you are passing through my physical body and not in a cool, ghostly manner. That is, if you pass me on the street. There, my system is on High Alert, I’m in the Red Zone, trying hard as hell to cope with the noises, the impressions and the smells. That usually means my private space expands. Sometimes to a degree, where I isolate myself and avoid any unnecessary contact with the world outside. Like these days, where I escape into music and on imaginary tours. But if you meet me at a Safe Place, in the Green Zone, you will get an entirely different impression of me. My Green Zone is at home, or a well known place, with very few people, that I equally know and trust. Like the time my mentor and I had one of our meetings in my urban garden in the city; “You are a completely different person here. You seem so focused and grounded – and happy!”.
But in most cases – you wont even know that I’m there. I take no offense. That is how I prefer it.
I have been watching you since I was a little girl. I have been reading psychology books at the local library since I was about 8 or 9, trying to figure out, how humans interact and why they do what they do. I have studied numerous tv-shows, not for the plots or the jokes, but for the interaction and the behaviours. I have listened to my family when they discuss the different fictional characters, to understand the finer details of what I’d seen. All of that, to make sure that no one would find out that I was wrong. You see, all the social skills that you would gain from just growing up, being a kid – those things, I had to learn, just like you learned about Math or Geography. Often I find that most of the social interaction you engage in, to me is like a math equation that just doesn’t make sence. But sometimes you have to accept that equation and stop asking why. Just like I a long time ago stopped asking why people talk about the weather, when everyone knows it’s raining – again! And just like school, when you don’t want the teacher to know, that you don’t know the answer, and you don’t raise your hand and hope you go unnoticed and wont be called out – I was the quiet one in any social situation, hoping that no one would start a conversation, that would hang me out to dry. And that is probably how I got through almost half my life without being “found out”. Sure, I was a bit odd as a kid, not profoundly odd, but odd enough to get bullied a lot. So I guess you could say that in my experience, being noticed equals unpleasant situations. And to this day, I can’t take a compliment without wondering when I’ll feel the knife in my back. The scars of life.
All the things I have told you so far is me, looking back and understanding life backwards – when I was a little girl and a teenager, I just felt off, like I didn’t belong and I actually didn’t consider that the way I learned social skills would be any different from how you did it. I just thought I was really crappy at learning, thinking I was dumb, since I obviously didn’t understand something that to everyone else seemed so easy and straight forward. I didn’t get the Barbiedoll fascination. But I played along, because apparantly “that’s what girls do”. And don’t even get me started on reaching the preteen and teen years, when those same girls started to wear make up and changing their way of laughter to impress the boys. Their talking about boys. About fashion. The sleep overs where you had to undergo some teenversion of a fucking makeover and that was – apparantly – “soooo fun, tihi”.
I’ll be straight with you – as straight as I can be, if you get a little queer one! – in those years, I stopped trying to copy people so hard. And most of the time, I actually found my peers to be utterly ridiculous. The pride that they took in getting drunk those first experimental years… what the fuck was happening?! I had just realized how to fit in, and then they’d change – and they changed styles, attitudes and fashion trends faster, than I could possibly keep up. By the time, I got the hang of the accepted way to “be”, they changed again.
I had no clue what was going on. So I started skipping school – or to be fair and accurate, I started skipping school to a degree, where I needed to fake either one of my parent’s signature (because just faking the flu or a stomach ache every once in a while just didn’t cut it), to avoid getting caught. It took about a year and a half before anyone noticed or asked any questions. Most of that sparetime was spent at the library – or exploring my big brother’s computer games. Well, until one day he almost caught me, because he chose to come home during a lunch break – after that, it was either the library or my alternative world. Either way, it was silent and there were basically no people to relate to.
At that point, I hated people.
And I hated the world.
I was longing to go HOME, but I had no clue as to what that meant. My self harm and suicidal thoughts and trying to realize them, had already been going on for a number of years at that point, although I didn’t have the knowledge to do it “right”. But those teen years took me to a very dark place. And I did what I basically do best – I studied for it! And in a day and age, where the internet didn’t exist, I turned to literature, to music and to – yeah, you guessed it – the library for information.
And the shitty fact about all of this was, I actually believed I was doing the world a huge favour. I considered myself to be a mistake, some experiment gone wrong, that no one had the heart to get rid of. I considered myself to be expendable. The fact that I left a lot of clues in essays and stuff without any response, really only proved my point: no one would give a shit!
Well, guess what, somebody actually gave a shit. Which only goes to show, how severely your own mind can turn on you. But I think that (suicidal thoughts and attempts) is a topic for another post on the blog.
This leads me to the description of Aspergers’ Syndrom that I sometimes come across: “a mild autism spectrum disorder”.
And I get why it is described as such. Just as I fully understand that there are other people with the exact same diagnosis, who struggle harder on a daily basis than I do. So I get where the “mild” comes from. But I still need to make a point here: having had several severe depressions, eating disorder, anxiety to a point where I was afraid to open my own front door, self harm, suicidal thoughts and attempts, lost two jobs and had to quit 3 educations due to stress and depression – or as in these days, isolating myself, going on imaginary tours, because I can’t deal with or process the world right now – tell me, how that is “mild”?!
Now, I don’t want pity. Never cared for that part. Pity is the most unproductive thing you can ever do to another person, and I don’t care how well your intentions are.
But I do need people to understand that what sometimes on the outside seems to be mild, can actually cause a tremendous amount of pain on the inside – which ultimately, if not dealt with properly, can lead to a very visible outbreak, such as melt downs, self harm, depression or even suicidal attempts – or worst case: actual suicide.
As said, you will most likely not notice me if you pass me on the street. If we meet, you will most likely see, what I refer to at a “polite and smiling mask”. I am practising letting the mask go, though. I have, since being diagnosed, realized that the mask may make the current situation easier – but it also takes a huge toll on my energy reserves. So I am practising not controlling the visibility so much. I have allowed myself to do minor stimming movements with my fingers and hands. I allow myself to cry, when I am overwhelmed. I no longer force myself to have eye contact, if it feels too painful. I have stopped feeling ashamed of my imaginary tours, because recently I realized that this is how I process information and emotions. This is how I prepare for upcoming events or very simply give my self esteem a little push. Or back when I had a job – that was how I achieved the results, that I did: I ran my “outside the box-thinking” through different imaginary scenarios, like a movie, rewinding, editing, fastforwarding, rewinding again… once I had a good idea, my low self esteem kicked in. Which would lead to another set of mind movies on how I would present the idea to my boss or my employees. Their imagined response would be enthusiastic, which would then give me just enough confidence to actually reveal the idea IRL.
Imaginary tours, or movies, if you like, is how I process, how I evaluate and how I regain my strength, when shit has hit the fan.
It is how I slowly, but surely, restore my willpower, when I feel like giving up.
This is how a cool breeze in the early morning from an open window can become a comforting hand, letting me know that I am still here and I am cared about. This is how I figured out that my diagnosis was an umbrella – a purple one! And from the umbrella hung the different comorbid diagnoses and difficulties on strings. And when the wind blew really hard, sometimes those strings got entangled and hard to seperate from each other again. In that wind, words came out of thin air. Words like “sudden changes”, “noise”, “sensory sensitivity”, “exhaustion” and “ignorance”.
It is also how I realized that maybe we were not so different, you and I. The neurotypical and the neurodiverse. That being said, please do bare in mind, that this is my experience and you will most likely find people on the autistic spectrum, who will feel very differently about that, due to the specific challenges and experiences they have. That doesn’t mean they are wrong. It doesn’t mean I’m wrong.
But let me clarify with an example:
When I say, I am sensitive to large crowds and noises, I sometimes hear the words “Yeah, I get that!”
Well maybe you do, maybe you don’t.
It all depends on how you and I define words like “large crowd” and “noise”. Your everyday shopping for groceries is my Black Friday. Your Black Friday is my bulletproof ticket to a melt down. A large crowd, to you, could be 100 people. To me, it’s about 12-15 people, and after that, I’m pretty much lost. Even in a group of 4, I feel the first touch of discomfort. Noise, to you, could be the construction site outside your office window. To me it’s the sound of my fingers on this keyboard right now – which is why I wear earplugs at the moment.
So there is a difference. A difference in intensity. But it’s not like we are speaking two different languages from seperate branches of the world language tree.
What I find the most difficult to explain to neurotypical people, is the social difficulties. The structural difficulties. The executive functioning difficulties. Many on the austistic spectrum will probably recognize “Oh, why don’t you just do it, already?!”, “why are you stressing out, you know these people!”, “just start with the most important task and take it from there” or “Come on, can’t you take a joke?”…. I’m saying “probably”, because I have heard those sentences and there are people on the spectrum, who struggle harder with those issues, than I do. So, relying on probability, I am assuming that these are quite common things to hear as a person on the spectrum.
And to be honest, I can’t come up with an example to explain it. Not at the top of my head (which is a funny expression). But I will try nevertheless.
So here goes:
“Oh, why don’t you just do it already?”
Usually referring to a task that needs to be done. Like when I need to shop for groceries. It can take me about 2-3 hours just getting outside my door. Why? Because, in my case, my mind is working through an enormous amount of hypotheses on what might happen and how I should respond to that possible situation. Maybe I am having a bad day and noises are really getting to me, I’m exhausted and I’d rather not go, because I know that will put me at risk of a minor or major melt down, but knowing that I have to go, I need to make some strategies to make it work. And that takes time.
Or it could be a task at home, but I just don’t know how to start. Like doing the dishes. Do I start with the plates or the glasses? What if there is something in the sink? Do I set that aside and do the other stuff first or do I clean what’s in the sink and take it from there? Sometimes those very simple decisions can be confusing. But does that mean that being neurotypical means that you can always make a decision? No, it doesn’t. Again, we venture back to the concept of intensity perceived. You will, as a neurotypical, know what it feels like, not being able to make a decision. You will experience a situation, where you may overthink or worry too much. Your triggers may be different – but you do know the feeling.
“Why are you stressing out, you know these people?”
Yeah, but here’s the thing – whether I know people or not, doesn’t take away my sensory issues. It can be a comfort and reduce anxiety to know, that these people are aware that I can be overwhelmed and that they know why.
But these people have conversations with each other. Those conversations create noise. My brain can’t really automatically seperate relevant noise from irrelevant noise. And now they are talking to me… what should I say? How much should I say? When will I know the interaction is finished? To answer those questions, I’ll try to analyze body language, tone of voice, the amount of eye contact and the way they stress their words – sometimes that prevents me from listening to the actual words being said. It doesn’t matter who they are.
Ask my girlfriend how many times, she has told me “I already told you that, like two seconds ago” – It’s not that I don’t pay attention – but a conversation, especially in noisy environment, contains information and noise at so many levels, that sometimes I just drop the ball.
Think about this:
Maybe you like to play a car racing game and you’re pretty good at it – well, play the same car racing game, but on 3 different computers and tracks simultaniously. And let’s pretend for a second that you actually had enough arms and hands to do so.
Missing a turn on one screen would add an extra turn on one of the other screens. You think you can predict the track, but miss a turn and the track changes. So you shift your focus to deal with that change, and this makes you miss a turn on another screen, which then leads to another change on a different screen – and so forth…
Close your eyes and really try to imagine how you’d feel while playing the game on 3 different screens.
Now let me ask you: Why are you so stressed out? You know this game, you have played it a hundred times over!
Honestly, I don’t even know if that makes any fucking sense to a neurotypical mind, but hey – I gave it a shot!
“Just start with the most important task and take it from there!”
You think, you’re being precise, but you’re not!
This is about prioritizing, which gets pretty damn difficult, if everything seems important (which is kind of a common austistic trade).
Sure, give me a list with the tasks of a) buying an icecream, b) water the flowers, that are drying up and c) wake up your girlfriend, she’s running late – and I’ll get an A+ for job well done.
However – how often do you come across task lists, that are that obvious?
I am educated in retail, and let me make a typical task list for a day in a grocery store: a) order new groceries b) prepare tomorrows discounts c) remove overripened fruit and vegetables from the display.
Which is the lesser important task here? Which of them, if I can’t keep the deadline, is expendable? Now, let’s say that the ordering comes with a closer deadline, say in two hours. You would think that would put it on top of the list, right? But overripe products really don’t look good from a customer point of view. There may not be any overripe products – but there may be a lot – and wouldn’t you like to know that, before making an order? However, if the overripe products take too long, you might not make the fucking deadline for ordering the groceries, which means you wont get a new delivery tomorrow.
And here’s the kicker: because you would think that preparing tomorrow’s discount could wait, since I did not mention it at first – but what if preparing for tomorrow’s discount makes you discover that the milk on sale, that was full stock in the morning, suddenly was sold out – that would be really bad, if you had already done the order and sent it off. This would mean that customers, coming in the next day to buy their groceries, would find an empty milk shelf. How good would that look at a customer service level?
So which one, if not making deadline, is the expendable task?
This scenario will eventually lead to the first category “Why dont you just get it done, already”.
Well, if you have an employee with Aspergers’ with difficulty in prioritizing, then prioritize for them. Give them an already prioritized list that shows how and in which order you want it done.
But have this in mind too: keen on doing a good job, we tend to go into details, so adding a deadline that is shorter than the official one, might come in handy. Or simply make sure there is extra time to begin with to reduce any stress or anxiety. And follow through. If you give a task 2 hours to be done, then check up on the progress after an hour – because as said: we can have a keen eye for detail, so if we spot rotten fruit, we might start sorting the fruit department to avoid further unpleasant views for the customer.
“Come on, can’t you take a joke?”
Most aspies are quite literal. On the “lighter” end of the spectrum, we might in time learn from experience.
My girlfriend is superskilled in the concept of jokes and irony. So I am getting my practise.
How can I tell if she is using one of the two?: either by her facial expression, the tone of her voice or it is so obvious, that if it was serious, I would be scared of her – or all three of them. The other way I deduce whether it’s irony or a joke, is knowing her:
She’s a kind hearted person with a lot of compassion. So I assume, that if I feel offended or hurt, then this was probably a joke. Because I am pretty sure, she wouldn’t cause me to feel that way intentionally. And this is only possible, because I know her and got to learn the exact tone of her voice and recognize some odd little spark in her eyes, when she makes a joke. Sometimes she is pretty good at covering it up. She has that poker face. And maybe I don’t get hurt, so that clue is out. And maybe it is not obvious, so that is out too. So sometimes I look at her – and I keep looking, to see if her face cracks up. Usually it does, but when it doesn’t, I sometimes have to ask her.
So NO!; sometimes we actually can’t take a joke.
Because what we actually hear, can be highly offensive and/or hurtful. Which is why I would say this: if you don’t know a person very well, you probably shouldn’t use irony or tell a joke, that could be misunderstood. Take the joke or the ironic comment through a “texting-test”: if you can write it, without the use of smileys and there is no way it can be misunderstood – then we will probably get it. Otherwise, you should make sure you transform the smileys you would use, very obviously into your facial expressions. If the reaction is not what you expected, then you probably need to explain that this was actually a joke and not a sincere comment.
And no matter how much a self-proclaimed stand up comedian you think you are, you should probably in the future restrain your wittiness in conversations with that person. Again, neurodiverse and aspies are very different, but personally I become very uncomfortable and insecure, if I constantly have doubts on what is actually being said and if you are even a good person.
And that is said from the “lighter” side of Aspergers’, that is a “milder” form of autisme.
Did these explanations make any sence? I hope so, but I don’t know for sure.
I’m looking up from my screen and the morning has lost the first crispness of the early hours. The first hesitant light of day has been replaced by the powerful sun from the cloudless sky. The soothing breeze on my skin has become warm and slightly uncomfortable. The weather forecast promises another day of full blown sunshine.
As the hours progress, I’m feeling my body being encased in warm sweat, that makes the loose hairs from our three cats stick to me and makes me feel imprisoned. My top is sticking to me. Everything itches and annoys and drains me mentally. At one point, I loose my temper. I hurt myself to push myself through the steamy fogs of heat and confinement. It makes me feel powerless and degraded. But I push through and I get a few of the small tasks for the day done; fetching the most necessary groceries and doing the dishes. Occasionally scribbling a few words or sentences in my notebook to keep my mind from drifting off completely.
I know, I need to get back out there.
I know that I have to get back into the world and blend in again.
Why do I do it, if it is so painful?
Because I have dreams just like you do.
I don’t dream about fancy cars and large mansions.
I don’t dream about having a hundred thousand followers on Twitter.
I do not give a shit about the brand, my jeans are made of.
I don’t care if my hair is more grey, than it should be at the age of 40.
But I want and dream about having people in my life that I truly trust and care about and that feels the same way about me.
I want to have the strength and the courage to cut out the ones that don’t!
I want to hold a steady job and be fucking good at it.
I want to pay taxes with my own salary.
I want my independence! And I crave your acceptance.
I want to feel at home.
That, my dear friends – makes me human.
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