[estimated reading time 10 minutes]

there is a well-known case study from the 80s telling the story of an autistic child. its details are vague and it has been told in at least six different forms. the original report was actually redacted and it’s not even clear what actually happened but it is a similar enough thing to what many adult autistics experience in their daily lives that it is a useful starting point. the child who, in most versions, is named lucia, giving this trigger-response pair the often-repeated name “the lucia effect”, was about seven and was diagnosed several years earlier with severe autism. she was partially-verbal but socially disconnected and exhibited typical childhood autistic traits. she was, however, integrated in a regular school but with a classroom helper. this particular day, she went to school as expected, after cleaning her room, which she did every morning, disposing of everything in her pale blue garbage can and leaving her mother a note of sorts that said “cleaned my room”, which her mother appreciated. knowing lucia was autistic, her parents had painted her room in muted blue tones and pale pink trim to avoid overstimulation and lucia seemed to feel happy and safe there, especially compared to the bright colors typical in primary classrooms.

returning from school that afternoon, lucia went up to her bedroom to change out of her school clothes into soft, light pajamas that would put less pressure on her sensitive skin and, walking through the door, immediately began screaming in panic. her father immediately jumped up from his chair but her mother told him to sit back down, that she had made a change in lucia’s room and that this was just autistic resistance to change, that it would pass in a matter of minutes. lucia had walked into her room to be confronted by a new garbage can, pale pink to match the trim in her room. why her mother had changed it is unclear from any of the story’s many versions but that is irrelevant. she was probably trying to be nice, as far as i can tell. perhaps a reward for all the daily cleaning lucia had been doing and she definitely loved pink. that is likely what her mother thought, that a “treat” or “reward” was justified and desired. the screaming continued for five or six minutes then everything was mostly quiet, punctuated by occasional sobs that dissipated over the next few minutes. her parents returned to what they were doing before. when her mother went up to bring her a snack twenty minutes later, she opened the door and immediately dropped the tray of food, running to the end of lucia’s bed where she was hanging unconscious from one end of her school tie, something her mother always thought was somewhat strange to make young children wear. she had managed to loop it over the top shelf support of her bookcase while standing on her bed, put her head through a loop, thankfully not an actual noose, and step off the bed without screaming out. while lucia was unconscious, she was still alive and her mother lifted her onto the bed where her breathing became stronger. she called a neighbor who happened to be a retired pediatrician and said they would come right over. lucia opened her eyes a few times to see her mother crying and just repeating the same word over and over – “why?”. eventually she answered with three words. “surprises scare me.”

the “lucia effect” is well-documented in autistic studies but almost never discussed without it becoming confused with an only-vaguely-related issue that appears to have dominated all information provided about adult autism – resistance to change.

of course, it’s important to remember that all autistics are resistant to change. actually, all humans are. we are creatures of habit. mammals, especially the great apes, are behaviorally-programmed to function based on a set of expectations and habits and it is this ability to function within an expected framework that doesn’t change significantly that has led to the development of ape cultural structure and, eventually, human language and society, urbanization and the complexity of modern human interaction. in psychology, this is called the “cultural expectation matrix” but it simply means people predict how others will respond and it allows for short-form communication and “normalcy” in interpersonal relationships that avoids the necessity of explaining things over and over. in other words, it allows cultural norms to exist. but that is only part of the story of change-resistance in autism and change-resistance is only tangentially related to the lucia effect.

for non-autistics, change is a spectrum. this is ironic because autism is often talked about a spectrum, which it isn’t. it’s actually a series of disparate binary conditions mostly linked to sensory malfunction and inherent behavioral programming errors. autism is actually a collection of “yes/no” questions about behavior. “is skin sensitivity normal?”, “is this person over/understimulated?”, “is temperature homeostasis functioning properly?”, etc. it isn’t a spectrum where some are more severe than others. it’s a series of potential traits where having enough of them generally classifies you as autistic and some have a particular group while others have a different set. the sets usually overlap considerably but there is significant variation. that aside, change-resistance, like sensory perception problems, is one of the most common traits in autistics because it works differently in autistics than non-autistics.

how a non-autistic person treats change is actually quite complex. they encounter a change and typically ask three questions – these are asked subconsciously but if they were asked directly the answers would likely be much the same. “how unexpected was the change?”, “how large is the change?”, “how important is the change?” – usually in this order. we can call these “surprise”, “severity” and “impact”. the surprise factor is actually minimal even if it is large. for example, seeing a pink garbage can instead of a blue one that was there only hours before is a significant surprise but that surprise fades quickly. severity, however, is much more important. that’s a measure of how different something is. for example, having to change from living in one city to another or to shift from one job to something completely different. these are changes with high severity. impact is the long-term aspect of the change. is the new job only for six weeks or is it a permanent shift? is the move to the new city temporary? has your family come with you or are you now alone? in other words, how much impact does this have on your daily life and for how long? severity and impact play huge roles in how non-autistics deal with change and resist it. for some, severity is the larger trigger while for most impact is the one that causes the most problems. it depends on how much the person is concerned with living in the moment compared to looking at the future. this, however, is not at all how change is seen through autistic eyes.

let’s think about it in terms of a scale. moving to a new city alone may for a non-autistic have a severity level of 9/10 while moving with family may be seen as 6/10. if this is a permanent move, it could have an impact level of 9/10 while a three-week assignment may be closer to 4/10. for an autistic, however, these numbers are mostly irrelevant. autistics think in binary terms. was there a change? yes. how extreme is the change? 1/1. how severe, therefore? 10/10. how much impact? 10/10. it’s all or nothing. either there was a change or there was not. what the change was is irrelevant. new socks or a new job or a new country, it’s really all much the same. that’s a bit simplistic and there are other factors to consider in terms of how difficult life is after the change. but the emotional impact of all changes is approximately equal. the problem is often that one change leads to another. but that is a whole other question.

that’s not the story of the lucie effect, though. lucie didn’t try to kill herself because the change was severe or high in impact. she hung herself from her bookcase because she was shocked. it wasn’t resistance to change. it was panicked mania resulting from surprise. and that’s what’s not talked about in autistic research literature. it’s not that it’s not talked about enough. it’s that it’s not talked about at all. it’s as if change-resistance encompasses surprise and failed expectations when they are completely separate issues.

autistics mentally rehearse their lives. when something is going to be difficult like going to a class in school or eating a meal, they prepare, often tens or hundreds of times, visualizing and practicing being calm, breathing, etc. this can take minutes or, in many cases, hours of rehearsal but the result is often that non-autistics are surprised by how “normal” they are. it’s not about desensitization. it’s really just an application of “practice-makes-perfect” acted out within the mind. the more difficult something is, the more potentially-traumatic, the more frightening, the more time it takes to mentally prepare for it. in my case, the event that causes me vastly more fear than any other is dealing with meals. so i rehearse them endlessly, all day, all night, so they don’t trigger mania and panic when they happen outside my head. which events are problematic varies wildly and tends not to be common between autistics but the reactions are similar regardless.

what this means, though, is that, like watching reruns, you have a specific expectation for how something will go. if you turn on the television and start watching a hockey game you already saw the score and play-by-play for, you know what will happen. if you know your home-team won, you won’t be surprised when they start scoring goals and, at the end of the final period, when they start jumping around screaming excitedly because they won. if, however, they suddenly get beaten, you will be shocked. even more shocked if you actually watched the game live the night before and are now seeing it a second time. you had an expectation and it didn’t come true but you are confused why it didn’t.

this is what mental preparation is like for autistics. it isn’t just a rehearsal. it’s like programming a collection of reruns so the actual event is less traumatizing. the problem is that non-autistics tend to welcome “surprise” or unexpected small changes in their lives. and they see the size of the change or circumstances, motivations and causes of the changes as mitigating or relevant factors. adding “treats” or “rewards”, for example is meant as a positive thing but, when unexpected, is extremely traumatic and shocking for autistics because it changes the preprogrammed event from what was the first time – and often the last hundred or thousand times. if you want to experience what this is like, though quite difficult to simulate, imagine this situation. you take a walk in front of your house, down your street, every morning. you never vary the route. just to the end of the block and back to stretch your legs. the sidewalk is the same. it’s always empty early in the morning. you live in a nice, clean neighborhood with little crime. it is completely calm. this morning, you do the same thing. as you get to the end of the block, an earthquake suddenly begins to shake the ground and the sidewalk cracks under your feet. you drop into a hole and are holding the edges trying to pull yourself out as the world shakes around you and splinters of glass from the windows of the houses rain down on your head. you may be thinking two things – “what is happening?” and, quite possibly, “this isn’t how i expected this to go”. of course, you probably wouldn’t ask those questions consciously but your subconscious would be reacting with shock to the sudden change. that is the result of surprise in autism.

remember, of course, that the quantity of change and its longterm impact are irrelevant to the equation because autistic thought is binary. in much the same way, the level of change doesn’t impact the quantity of panic, mania and shock resulting from the surprise.

there are mitigating factors, of course. but these are often as forgotten as they are basic. the reason for the reaction isn’t that there is a change. yes, autistics are resistant to change for all the reasons we’ve already seen. but that’s not the issue here. the reason is that the change was unexpected, unprepared. it was a surprise. and the difference between knowing something is coming and not knowing is actually an interesting duality in autism. if a non-autistic walked out the door knowing there was going to be an earthquake, they would likely be far more panicked when it actually came than an autistic. once the event is expected, the autistic would have rehearsed it, expected it, practiced it emotionally and be likely to respond calmly as if they had experienced it a thousand times before without emotional reactions. because they have. this is why many autistics function far better than their non-autistic counterparts in fields like emergency medicine or as first-responders in fire or police services. others, of course, don’t work well in those situations for other reasons, some having to do with autism while others simply relate to personality type. i, for example, don’t do well in high-emotion environments because i am a hyper-empath. some autistics are hypo-empaths and the emotions of others are irrelevant so they make excellent trauma surgeons and firefighters.

while change-resistance is a significant factor in autism, it is distinctly secondary to the traumatic reaction to lack of expectation-fulfillment or, in simple terms, the shock of surprise resulting in panicked mania. while expectations may occasionally have to be shifted in a shocking, surprising way, this is rarely necessary. preparing in advance, even if only by a few hours, eliminates the shock and allows autistics to deal with the emotional preparation necessary for the event.

of course, there are many variations to how autistics respond to situations and some are even on the other side of this segmented-binary-division. most things in autism are bidirectional binaries. there’s the question of “is your smell sensitivity in the normal range?” and this is very much a yes/no question. but this may be hypersensitivity or hyposensitivity. in much the same way, some autistics are emotionally or mentally hypersensitive or spend their entire lives craving more sensation, more input. almost all things in autism work this way — the question of normalized range is yes/no but the direction tends to be extreme but in either direction. as such, some autistics crave constant shock and surprise while others, like me, seek predictability. this isn’t change-resistance. it’s shock-aversion. and it is perhaps the one thing about autism i wish more than any other people in the general public understood about the condition, more even than that it is a physical disorder or that it is not a spectrum but a collection of binary traits.

now, though, you know about the division between change-resistance and shock-aversion in autism. perhaps your understanding is better, if not of others, of yourself. how do you relate to surprise? can you watch a movie without knowing the ending in advance? i can’t. watch a sporting event without wishing you knew the final score and the play-by-play? i would much rather have read about it in advance. if i know what’s coming, i can prepare. if i don’t know what’s coming, it can lead to anything, even complete emotional collapse. surprise is terrifying to many autistics. terrifying in the sense of torture. even the smallest surprise – you can imagine birthdays and christmases, for example, are not quite the relaxing events many non-autistics believe they are. people assume it’s about a change in routine and that’s certainly part of it. but it’s the unknown that is the bigger driving factor. and if autistics seem normal when unwrapping presents it’s because they’ve likely fought this battle on the inside to seem socially-adjusted. they might not be quite on the edge of screaming in panic. but it might be good to remember just how close that line may be when surprise is in the air, especially if there are other things making the situation more tense to begin with. as i said, now you know. knowing doesn’t fix anything, of course. but, as with all things, knowing is better than being shocked later, isn’t it?

for me, it certainly is. a little knowledge is a good thing. and a lot of knowledge? even better.

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thank you for reading. your eyes have done me a great honor today.