I originally intended to make this post short-for-your-convenience, but I have so much to say, and that’s kinda why I made this blog in the first place: To allow myself to go long. So I came up with a cunning solution: I’ve synthesized the short and long versions into one. The short version is the text highlighted in bold – and the long version is the bold + everything else. So just read the bold if you’re pressed for time / can’t be bothered with my long-winded rambling. ^^
My main reason for self-diagnosing was that I always felt misunderstood when I tried to do the simplest of social things, or when I tried to define my boundaries to others. When you meet new people (or even when you’re around people you know quite well), you instinctively base the way you treat them on what most of the people you’ve met in the past have expressed that they wanted. It’s very pragmatic statistics – if you do what normally works, it’ll work in most cases, and that saves a lot of time you would otherwise be wasting on discussing with the other person how they like things, or holding back on any interaction until you’ve observed the other person for a long time. So it’s practical; But it can cause a lot of problems for those of us who differ from the norm, because we consistently get treated like someone we’re not.
Indeed, I think a lot of people make the mistake of confusing the majority with the universal – thinking that if most people are like this, it literally means that people are like this, so anyone who seems to deviate is either playing some fake-ass role to seem interesting, or their deviation should be explained by putting oneself in their shoes – “if I did this, why would I be doing it?”.
Very often, in the case of someone autistic, if an NT explains our behavior in terms of why they would do the same, it comes out seeming like rudeness, laziness, selfishness or a whole slew of other negative things. Most often, though, when someone autistic seems to be treating others carelessly or rudely, it’s not for malicious reasons – it’s because they don’t know how to do something normal people know how to do, or because they’re expressing an unusual need.
Before diagnosis, when I tried to explain my differences, it would almost always be seen as trying to get other people to go out of their way to give me special treatment. In reality, I was trying the exact opposite: to help make it easier for others to be around me. Even after diagnosis, I still have difficulty finding the perfect formula in each situation for explaining things in just the way that will make the other person’s face light up with understanding and relief, instead of making them angry and/or confused. Especially right at first, when I only had the psychiatric definitions to go by, it was hard to synthesize those characteristics into what people around me needed to know. But here’s the most useful explanation I’ve cooked up so far, for those friends who want to really understand the practicalities:
Most importantly, Asperger’s Syndrome means that I can’t read social cues. I take the things said to me literally, with little understanding of subtext, context, and how body language influences the meaning of the words. In short, I can’t take a hint – I hear what you say, not what you mean. To an aspie, the point of conversation is to share information, not to be sociable or make a connection on some other level. We can’t use words indirectly.
So take an everyday situation like two strangers standing at a bus stop. One person says to the other, “What lovely weather we have today!”
If the other person is NT, what they’ll hear that person say is “I would like to make contact with you to pass the time and to feel connected with someone (anyone) else. I am starting the conversation with a harmless statement of fact that nobody would disagree with, to avoid accidentally ostracizing you. If you answer very briefly without a smile, I’ll take the hint that you don’t feel like talking, and go back to minding my own business. If you turn to me and give a longer answer with a smile, I’ll know you feel like talking to someone too and carry on with the conversation.” It’s a social code that doesn’t have to be explained, so the other person has their choice between these two kinds of answers and can indirectly tell the other “I don’t feel like talking” or “I do feel like talking” by choosing one.
If the person being addressed is an aspie, they won’t have access to all that subtext, because aspies don’t instinctively grasp social codes – we just hear literal meaning. So if a stranger at the bus stop says to them, “What lovely weather we have today!”, what they’ll hear is “What lovely weather we have today!”
This is really confusing.
There’s no logical reason why some stranger should suddenly approach me and inform me that the weather is lovely. Doesn’t she realize I know? Does she think I’m blind and have no sense of temperature? Does she think I may disagree, so she’s trying to start a discussion about what constitutes lovely weather? If so, is she trying to piss me off? Why? What have I done to offend her? Why would she need my opinion on the weather? Do I know her and have just forgotten? Or does she have so much ego she just needs some random person to confirm that she’s right about something obvious? Should I just say “Yes”?
For a long time, this is the conclusion I would draw: That I was supposed to say yes and shut up. Because I didn’t understand what we were doing (or what the other person thought we were doing), I would say it very matter-of-factly, inadvertently making it seem like I was being unfriendly (also because I was puzzled and so probably said it more like “Uh, yes?”, sounding sarcastic). People would then get visibly offended, and I would understand I had done it wrong. I tried a lot of different tactics until finally, I just got instantly pissed whenever someone tried to make chit-chat with me, because I got frustrated at being subjected to some pop quiz I didn’t know the right answer to. Cue endless anger escalation between me and any person innocently trying to chat with me.
By now, I’ve cracked the code and understand that people making meaningless chit-chat are trying to do a little social dance with me, for fun. I know they’re being friendly and (on a good day) don’t get pissed off about it. But I still have to painstakingly decode every piece of chit-chat in order to dance along – even if I’m only going along with it long enough to decline the conversation. Social codes are like a picture puzzle, but with words – but NTs play it so effortlessly that most of the time, they don’t even think about the indirectness of language. They think about it as speaking directly to each other. Being AS is being retarded at social picture puzzles. I can understand why they’re fun to do together (I like doing actual picture puzzles), but playing with NTs is a beginner playing with the pros – the skill level is just too different for it to be anything but frustrating.
Infact, the skill level is so different that social cues are fundamentally different things to NTs and aspies.
To NTs, interacting with others gives them energy, because it’s fun and makes them feel ‘plugged in’ to a community. To aspies, interacting with others is hard work. This difference seems to have to do with how we access the information in our brains. Like I mentioned, NTs access social cues so effortlessly that it feels direct and instinctive – they don’t have to translate “What lovely weather we have today” into “I would like to make contact with you to pass the time and to feel connected with someone etc. etc. etc.” You could say that social cues are a first language for NTs. For aspies, literal meaning is our only first language, so all social cues (body language, intonation, context etc.) must be translated before we can understand them. Scroll up and look at how long the ‘translation’ is. A six-word sentence turns into 95(!) words when the full literal meaning is made explicit. This means that for aspies, any social interaction requires huge amounts of mental energy. It’s about as much fun as taking the final exam for a class you never attended. The fun factor is completely gobbled up by the need to be thinking really hard 100% of the time to understand the situation and what people are saying – and by all the misunderstandings and negative consequences when even thinking really hard won’t get you the right answer, because you have to learn through trial-and-error. (Also, you often have to make the same mistakes several times, because a) other people don’t make sense to you and b) all social gatherings are high-stress environments, and stress decreases learning speed.) When you’re an undiagnosed aspie (and in many cases, even if you have the diagnosis), people will expect you to be able to process what they’re saying and doing at the same rate as NTs. If you buy into this notion, you may find yourself constantly working at 120% of your capacity in a desperate – and futile – attempt to keep up. I did this for many years and was still constantly scolded for not trying hard enough, because I was going at maybe 60% of the average NT’s capacity. This easily results in overload, and that’s the second most important thing the NTs around an aspie need to know:
We shut down sometimes. We get overstimulated and, as a consequence, simply have to leave or become vacant and unresponsive. An aspie friend of mine very aptly compared it to that beach ball that starts spinning in place of the cursor on a mac when the computer is ‘thinking’. Like in that situation, it doesn’t feel like thinking – not to ourselves, and not to our surroundings. It just feels like being put on hold because you’ve asked too much of the system and it needs some rest before it can start back up and complete your request. If people keep asking an aspie to respond or act when he or she has shut down, the reaction can be anything from an anxiety attack over depression-like apathy to fury. Whatever the reaction, you can bet your ass that asking an aspie to come back from that vacancy they’ve gone into ain’t healthy. Not for the aspie and not for their surroundings. In the best of cases, it’s like continuing to ride a bike after the tires have been worn off.
As I understand it, many aspie children have meltdowns rather than shutdowns, meaning they just go apeshit until they’ve used up all their energy. My impression is that many switch to shutdowns as they get older either as a form of socialization (learning not to take your overstimulation out on others), or because they become better at defining their boundaries to themselves and others so they won’t go too far into overdrive. I figure meltdowns are a step further into desperation than shutdowns.
Another thing that comes from being AS is that I need lots of predictability and stability in everyday life. Any last-minute thing, like a cancelled appointment, something I suddenly have to do here and now, friends coming over uninvited etc. is hard to deal with and provokes anxiety. It’s also hard to change habits, like finding a new hairdresser because the old one is retiring, or having to buy my groceries in a new store. This also goes for things like where to sit in a room – think Sheldon Cooper from The Big Bang Theory – ‘his spot’ isn’t just his spot because it has optimal conditions like temperature etc., but because then he always gets to sit in the same place.
This need for stability may come from an inability to shut irrelevant factors out. It’s believed that autistics don’t have the filter for ‘tunnel vision’ that NTs have, where, for instance, if you’re going for a specific fruit at the grocery store, you only ‘see’ that fruit and mainly ignore everything else around you. So supposedly aspies see everything equally clearly and can’t distinguish between important and unimportant details (again, resulting in an easily overloaded brain).
I have my doubts about this theory. It’s neat for explaining why many autistics are also diagnosed with ADHD (which is mainly about the inability to concentrate on one thing at a oh look, a butterfly!), and for explaining why we crave predictability, which doesn’t demand so much of the brain, because we learn certain patterns and can just mindlessly habit our way through them. But fact is, autistics are also known for having extremely effective tunnel vision when we’re interested in something, rendering us able to concentrate on a task well beyond the boredom threshold of most NTs. (This is why many aspies are extremely well suited for a number of jobs, from factory work over music to scientific research – as long as the factor of socializing with coworkers is left out of the equation.)
Honestly, I think the need for predictability is something secondary to Asperger’s Syndrome, stemming mainly from being generally overloaded and stressed out because of interaction with NTs and the world they’ve constructed around us all. In my own life, I find that my tolerance threshold for last-minute changes and excessive newness goes up when I’m happy and relaxed, and down when I’m stressed and tense (much as I imagine is the case in the rest of the population). I’ll bet if an NT was surrounded by aspies, they’d have a really hard time dealing with last-minute changes too, because those changes wouldn’t make sense. When the world around you is built by humans, as our world is, and most of those humans are fundamentally different from you, the world is a chaotic place to live, seemingly without any inner logic or malleability for your needs. The natural reaction to constant chaos is to crave order, to try to restore balance.
I’m currently living with an unusually understanding roommate. One of the things he does to help me out is ‘warn’ me before he brings friends over, so I’ll be mentally prepared for more people than usual. At my request he also (most of the time) tells me when he’s leaving the apartment and coming home, and what plans he has for the coming week, so I’ll know when I’m alone and when he’s there. Even though he may just be sitting in his own room and not interacting with me at all, for some reason it’s very important for me to know if he’s in the apartment or not. I’m blessed and thankful that he gets that and keeps me updated – even when he has to repeat his plans several times because I have a terrible memory. Because of this, for the first time in my life I’m actually really enjoying having a roommate. I’m not constantly overloaded by another person’s presence (though I probably still would be if we lived in the same room). Which brings me to another characteristic:
I need lots of alone time. For aspies, it’s hard to switch quickly between different ‘modes’ – for example, we can’t just go from ‘reading mode’ to ‘social mode’ in an instance, like NTs do if someone interrupts their reading with a hello at a café. Whenever I’m around other people, my energy is being slowly and subtly drained like the battery of an unplugged laptop – because I feel the need to be constantly vigilant, in constant paying-close-attention-to-others mode, around even my closest friends. Not because I necessarily expect them to hurt or shock me (although I normally expect strangers to do that, just in case) – but because I know that once I ‘tune out’ and go into alone mode, it takes time and effort to get back into social mode. My body language, facial expression, tone of voice and choice of words aren’t more-or-less automated like in NTs, but have to be consciously controlled – so if I’m in alone mode and someone suddenly addresses me, I might respond with no facial expression and in the wrong tone of voice, and that could be hurtful to them. Being an aspie is for me a bit like being a robot, and I’ve always responded emotionally to characters like Gigolo Joe or Bicentinnial Man, because I feel like a ghost in a machine, like my body is heavy machinery that I’m clumsily operating with levers from someplace deep inside my brain.
Again I’m not sure if this is inborn in aspies, or if it’s a secondary characteristic, stemming from being so used to having to pretend to be normal. The instinctive body language that autistics do have is normally misinterpreted by NTs, and so if you just act natural as an aspie, this can get you into all kinds of unforeseen trouble – or, less gravely, it can make people give you something you don’t need, or do something for you that isn’t really a favor.
When I was younger, most of the time, my face had an expression that my parents dubbed the ‘stone face’ – a mask of nothingness that they interpreted as a surly way to blank them. I guess that’s what it was, too – I learned early on that expressing myself naturally got me nothing good, and so from late childhood onwards, I concealed every part of my body language like someone could come and steal it from me if it became visible. I always thought this was the result of a depression that kicked in at age 8, but in hindsight, it may well have been the other way around. Or maybe it’s a circular chicken-and-the-egg scenario. Either way, I have a feeling that both the alleged emotionlessness of autistics (casting us in the role of the purely rational intellectual) and our alleged lack of a natural body language could stem from our actual emotions and body language being ‘voted down’ and/or ignored by our surroundings from early childhood. If you’re showing emotion and nobody else aknowledges its existence, is it really there? Or: Will it continue to be there forever? (This question is why I’ve called my blog Schrödinger’s Aspie, after the Schrödinger’s Cat scenario: I wonder if emotions and personality can die away, stop existing, if they’re just ignored by others for long enough. A lot of aspies talk about having multiple personalities – masks – to satisfy the social needs of NTs around them, and to protect their own inner selves (their real selves?) from interaction. I know my personality has changed a lot as I’ve tried desperately to fit in – and some of those adaptations, although originally stemming from a feeling of not being good enough as myself, have eventually become myself, in a positive and integral way.)
My sensory system works differently than those of NTs. There are a lot of variations for different aspies here – some report having virtually no sense of touch and may engage in self-harm just to feel something, others report hypersensitivity to the point of touch being almost unbearable. The same goes for the other senses. So the main thing to know here is that you can’t expect to know how (and how intensely) the world looks, tastes, smells, sounds, and feels to an aspie, based on your own experience (not even if you’re an aspie). Mostly, though, we have a tendency to be more sensitive than NTs.
But I think most aspies have a problem with crowded rooms where everybody’s talking at once – even if they don’t have to be sociable with anyone. Sometimes when I’m stressed out, a normal conversation volume between people sitting across from me on a train can feel like they’re two inches from my face screaming at the top of their lungs. I’ve found earplugs to be an absolute neccessity and never leave home without them. I also easily go into a panic attack if I’m in a very densely packed room where you have to squeeze by people to get out. Trains, planes, buses etc. are always high-stress areas. Having a seat reservation helps, though – once I’m in my seat, my little island of purchased personal space, I’m safe. Like I’m alone in a room without walls. I always try to sit by the window so I’m not literally surrounded by people. The visual space next to me, on the other side of the window, helps me feel like the room is less cramped – and if there’s just wall next to me, it’s still a safe area, because I know it won’t move or demand anything of me.
So I think that’s the basics. Knowing these things hopefully makes it easier both for NTs to be around aspies and for aspies to be around NTs. And it only took a ridiculously long explanation! (Seriously, I’m starting to grasp why it might take a lot of work to wrap one’s head around all our differences – I’m becoming glad I have 27 years of experience with misunderstandings to draw from.)