when things go wrong in my life, the most common phrase i hear is “it’ll be ok”. i suspect the same is true in yours. comfort often comes with the certainty, often misplaced but just as often correct, that the future will be better than the present. the other piece that usually accompanies this is the other side of the temporal coin – “you’ve had this happen over and over and it’s always been ok”. the past is a predictor of the future. in other words, dice have memory. that what happened in the past will continue to happen. post hoc ergo procter hoc. after therefore because.
and those things, i am told, are extremely comforting to non-autistics. and, perhaps, to some autistics, too. the story i am telling here is not universal. like all things in autism, there are general rules, things that apply to the majority but not everyone. there is nothing in autism that functions as a catch-all except this – autistics live in worlds of extremes. for us there is no “little painful” or “gentle sensation”. there’s sensation and it feels like nothing or everything. there is no moderate, no middle, no between two points. there’s extreme. for some, that extreme is that you feel nothing. this is what leads to the common autistic presentation of disinterest, social disconnection and separation from the world. it’s often read as lack of emotion. that’s not what it is but it can certainly appear that way. lack of emotion is something else, though that’s common, too.
the other extreme is feeling everything. feeling it so much it hurts. every movement, breath of air moving, fabric, word spoken or read, touch against objects, textures, tastes, smells. they’re all excruciating, extreme, painful to the point of torture. the intent doesn’t matter. even pleasant scents trigger extreme sensory reactions, often flashbacks and obsessive memories, too. tastes and smells are often the strongest triggers but this certainly varies from person to person.
the one constant, however, is that autistics only feel things in extremes. too much or too little. we don’t understand the concept of enough. it doesn’t exist in our lives.
the other thing that almost functions as a constant in autism is the lack of decision-making ability. that’s not quite as universal, though. autistics generally only make decisions in two ways — we let things happen and the decision is made by default or we wait until the decision has to be made out of pure desperation and the decision is then made without thought or consideration, even if there’s been a huge amount of time spent obsessing over it. whether it’s the right choice is irrelevant. it’s just whatever choice comes to mind when there’s absolutely no time left to make it. then it’s over. which brings me to the issue of time, the real idea of interest today. and that’s not a universal, either. but it’s common enough to talk about and be relevant to some, if not most, autistics.
i should probably qualify that. i mean it’s relevant and common among what i tend to refer to as “connected autistics”. there was once a notion of “high-functioning autism” that was based on the idea that some autistics lead normal daily lives while others can’t. that’s an odd distinction because it doesn’t describe the pain that accompanies autistic life every second of the day. but autism is really two completely different disorders with very different impacts on daily life but with the same trigger – extreme sensory perception. that’s the linking factor.
those who are “connected” to the world are those who can communicate and participate in daily life in a way those who are “disconnected” can’t. this is usually a question of what is seen as “intelligence”. that’s not actually what it is. it’s got a lot more to do with communicative language but that, too, is a subject for another day. the simple result is that some autistics function in human society by speaking and listening, having conversations, usually conversations they don’t want to have with those who are irrelevant to them simply because of the need of society to constantly impose itself on their lives. then there are those who can’t have conversations, usually because they don’t speak and often don’t seem to understand what they hear, either. these are “disconnected autistics” and what i write generally has little to do with that group, though the underlying cause is much the same and, i expect, what i have to say about time likely applies to them, too. but it’s hard to tell for obvious reasons.
time, though, is difficult for the subgroup of connected autistics i refer to as “present autistics” or “presents”. in disclosure, i am a member of this group and nearly all autistics i have communicated with are similarly but it’s not universal.
presents live, as the name implies, in the present. of course, all humans live in the present. that seems like a truly useless statement. but it means something different for us. if you are a non-autistic, you live in a world constructed of expectations based on the past but most of what you are doing in your life is about constructing a future. that future is extremely important to you. you are prepared to suffer now for a better future. actually, that’s the entire basis for most common world religions — present suffering and self-denial in exchange for an eternity of (in christianity) blissful coexistence with deities or (in islam) the reward of physical pleasure or (in hinduism) escape from a world of pain, etc. autistics tend not to be very religious. religions are built for non-autistics who have a future-and-past understanding of time. let’s explore that.
time is a (potentially-infinite) continuum. we live in the present but we are the aftereffect of our past decisions and what we do now creates the future. that’s not a belief system. it’s simply how the physics of time works.
but if you’re a present, only one of those periods matters at all. the past has disappeared. people who talk about the past are speaking of something that has only theoretical importance. talking about what happened yesterday or last year is only as relevant to us as what happened in antiquity or the middle ages. it might be absolutely fascinating from an academic, detached perspective. but it has no emotional content or functional relevance to us. we are conceptually confused by things like prison. what a person did yesterday is causing them to be locked in a room today. but what they did yesterday is over. it happened yesterday. why is that relevant to their current physical state?
the story of the grasshopper and the ant has always struck me as an odd moral lesson. i’m sure you know the story. the ant arduously struggles to build a storage area and fill it with food for the coming winter while the grasshopper plays all day and relaxes. you know what’s coming. the winter hits and the ant is happy and ends up taking pity on the regretful grasshopper who has learned their lesson. this is often given as a morality tale to tell people they have to think about the future. and that’s fine. but the real lesson is that you have to learn from history and make detailed plans. and that’s not a problem for autistics. even presents. we do ritual. we do preparation and anticipation. we do expectations. what we don’t do is function in a way where they matter.
i know. that’s confusing. so let’s imagine i’m the grasshopper. the ant tells me i have to prepare for the winter and i don’t listen. so i am starving in the winter and i learn my lesson. i should have listened to the ant. thanks, ant. i’ll do it better next time. so the next summer is full of preparation for the winter. why am i doing it? because now it’s the programmed ritual for summer. am i particularly interested in the winter? no. thinking about having enough to eat? no. it’s because this is what i do in the summer. this is my present task. it’s what i do every day not because of the future, simply because it’s what i’ve been assigned to do. why i’m doing it makes no difference.
i once had a conversation with my father. he wanted me to change a particular behavior. no problem. he had done a huge amount of research, it seemed, into the dangers of what i was currently doing and it could cause problems. and he shared his reasons for asking me. that’s fine but i was confused by it. i was disposing of something in the toilet and he wanted me to dispose of it differently. why was i confused? because i didn’t understand plumbing? well, i don’t. but that’s got nothing to do with it. i was confused because he was explaining to me a potential future scenario that was disastrous. and he was explaining his reason for asking me like the justification was relevant. and that seems to be how non-autistics or even autistic non-presents think about things. but all he needed to do was say “can you do this for me?” and that was enough. not just that it was enough, though, which is perhaps even more confusing. all those reasons were irrelevant to me. i don’t care about the future. it doesn’t matter. prevent disaster in the future? not something i ever think about. for me, the future is an unimaginable nightmare. yes, unimaginable. i imagine future nightmare scenarios constantly. they are my constant obsession. i am, however, absolutely certain the future will be some nightmare i haven’t imagined. literally unimaginable.
what does this really mean in practice, though? it means the past doesn’t matter and the future is irrelevant until it happens.
let’s look at an example. i am in constant and extreme physical pain particularly in my stomach. it constantly feels like i am going to be sick. i hope this can be fixed but i have been fighting with the medical world for literal decades about this and it has only gotten worse so i have no expectation of it being corrected. i will likely someday die with this having gotten so bad it physically kills me my triggering a stroke. but that’s not the point for the moment. i feel sick all the time. especially after i eat or drink. drink in particular. water is my arch-nemesis. yes, water. the source of all life. you see my problem, i’m sure. necessary but excruciating.
anyway, i drink water and feel overwhelming nauseated. which is predictable, though the degree of pain is hard to quantify before it happens as it’s not always the same.
so i am sitting in bed literally writhing in pain and i am told “you’ll be ok”. i’m not sure why that matters. i am in pain now. i am unable to sit still, rocking back and forth because the pain is so severe i can’t breathe. the sensations are incredible. what difference does how i will feel in an hour or tomorrow or next week make? for others, i am told it is comforting. to me it is irrelevant. it simply doesn’t matter whether i will be ok. i have no doubt i will be. but that’s not comforting in the slightest. it’s like having a broken arm and being told by the doctor i’ll be able to catch a ball next year. ok, doctor, that’s great but i wasn’t curious and it hurts now. i can’t move it now. that matters. next year hasn’t happened yet and the ball is of no relevance to the situation. yet they always say things like that when you break your arm, don’t they?
when this is obviously not comforting, the next line of attack on the problem is usually “you’ve drunk water before and it’s never made you sick so it won’t this time”. yes, i know this is an attempt at rationalization and logic as a way out. “you’ll be ok” is a belief. it’s a hope for the future based on an opinion and it’s probably sensible but it’s an emotional projection. and that’s usually what people need to feel better. “it’s been ok before and this time is no different” is a stronger statement to reinforce it. that there’s not just a belief of things being ok but a guarantee based on past performance and logical progressions.
but this is no more significant for me. dice have no memory, remember. it’s what every gambler is supposed to learn, few do and more forget every time they think about making bets. usually stupid bets. the cards i got today don’t determine what i’ll get tomorrow. the number i rolled last don’t decide the next ones. and life is far more like dice than physics or chemistry. what happened last time i had a glass of water doesn’t determine what happens next time. sadly. it might make it likely or not. but that’s statistics. it doesn’t guarantee. and the only thing that really matters in these cases of logic is a guarantee.
but even a guarantee doesn’t much matter to us presents. because the whole point is that tomorrow is irrelevant. actually, ten minutes from now is irrelevant. what i need is for things to be better now. because better later doesn’t take away the pain, sensations, obsessions, thoughts, dreams, whatever i’m experiencing.
anyway, this isn’t about how to fix a problem. it’s just a description of a huge difference between presents and non-presents and, to a large extent, autistics and non-autistics. i hope it’s been enlightening. or useful. or simply interesting. thanks for reading. you’ve spent your present with me and, as that’s all that matters, i am grateful for your eyes.
