Tuesday, December 29, 2009

basic overview

by popular demand.... a simplistic and quick overview of autism (according to the abifae)...

this is all based on living with me, an autistic, talking to other autistics, and reading dozens of books, hundreds of articles on everything related to autism: childhood development, amygdala research, social development, mirror neurons, play, speech, endocrinology, synesthesia, ecology, psychology, sociology, diet and nutrition....

most important: each autistic child is as different as each non autistic child. this is a very basic concept of autism and particularly higher functioning autistics. people like labels. a label makes you belong. being different makes you special. and thinking someone else is different makes you superior. don't mistake my sweeping statements as "all autistics". i'm just too lazy to write "some" or "many" before every sentence.

what is autism? autism is a lack of ability to intuitively grasp the social world. when you take all the signs and symptoms and why is autism bad and how does it effect our lives... that's all it comes down to.

the more important question is: what causes a person to lack such a vital, basic intuitiveness?

the cause is up for debate. whether the mother didn't get enough vitamin d while pregnant so the brain never developed, or whether it is almost entirely genetic, whether it's diet and vitamin absorption or anything else... the RESULTS are the same. my guess is all the reasons have a grain of truth and it is a cumulative cause. genetics set the stage and environment knocks over the dominos.

the results are that the amygdala doesn't process right, the brain doesn't set up it's architecture correctly, and the brain never learns to see itself as separate from others. autism is a developmental disorder. everything is just set up a bit wrong and development therefore delays.

the amygdala controls arousal, autonomic reactions to fear, emotional responses, and hormonal secretions. all, coincidentally, things autistics have extreme under or overreactions to. why do autistics do it wrong? studies show that autistics have larger, more active, or smaller than normal amygdalas. is there confusion on the scientists' part? it doesn't appear so: studies say that smaller amygdalas lead to less eye contact and studies say that the abnormally large growth causes autistic symptoms. once again, maybe they are both right. if the amygdala is undersized, you are lacking in reactions. if it is too large, you get overwhelmed by your reactions and close yourself off. both will result in a lack of contact with the outside world.

if you watch this video, at 19:26, VS Ramachandran discusses synesthesia. autistics very much show signs of not having very strong architecture. we confuse and combine senses. and if we are lacking in filters for our senses, why might this not be because we're lacking filters between parts of the brain?

this lack of filter is vital in understanding autistics and over stimulation. let's say you are in a quiet room. you hear the air move through vents in the walls, you hear the foundation settle, you hear people walking or talking outside. murmurs and whispers all around you. the world is never quiet. it is susurrations and sighs, murmurs and mutters, whispy sounds and sharp sounds. add to this actual noise and the mind cannot hold it all. but we can't block any of it so we get anxious and "over stimulated". so we flap and pace and mutter and tap walls and pull tighter into ourselves for safety. we do this with ALL of our senses. and yet, sometimes, we can narrow down to one sense entirely and focus to the point of blocking out the rest of the world. without natural filters we find artificial ones and that is what "stimming" is all about.

theory of mind is getting a lot of attention in the autistic world. theory of mind is the ability to "attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires and intentions that are different from one's own". i personally believe that autistics never develop a strong sense of object permanence, so they are a couple steps behind theory of mind. we attribute mental states, eventually, to ourselves, and then assume those states onto everything around us. like a small child who buys someone else what they want for a present and assumes the gift will be well received. we never quite grow past that. i'm a rather grown child and the best i do is to know by rote that others are not like me. this is a surprise every time a new situation comes up (read below about categorization) and i have to learn that new situation by rote, as well.

this is why we put things down and if someone moves it, we don't know it still exists. we panic. "where is it? could it be elsewhere" is not a concept we naturally have. so we obsessively put things either in the same place all the time, or out in the open so we can see it all. if someone leaves, they drop from our conscious, they return strangers to us. in a world that changes so drastically and nothing is real or permanent, we therefore cling to the things that we can to force stability into our worlds. if you think about it, a great deal of autistic obsessive behaviors come down to this lack. so do the emotional distances and the need for constant attention to focus. we are like babies in many ways. mentally, we just are not going to understand that things have their own permanence. we create permanence for the sake of our sanities through strict routine. this book is not permanent. i put permanence on the book by almost watching it. this parent is not permanent. i put permanence on this parent by my actions.

One article states: You know you're in a dream world when the physical laws of the universe appear to have changed. When gravity has been turned off at the socket, objects seem to have no inertia and vanish when they are out of view. Dreams can be surprising and unsettling precisely because we're so used to how the waking world works.

but what if you don't have a separate waking world? what if things are just kinda always unsettling because things never stay put? what if you are permanently clumsy because you can't figure out the basic way things are? or you can never quite relax because things sometimes stop existing? what if things are so unstable that you never learn to not hallucinate? you never learn to focus in on what is "real". you never learn that there is an inside world and an outside world.

without understanding that things come and go you also can't understand what things are you and what things are separate. you need a sense of separateness to understand another person and therefore to get by socially. "walk in their shoes" doesn't make sense to someone who isn't sure where this other person really exists. if i am me, then you are me, then my shoes are your shoes, and i'm already in them. we aren't too good with idioms anyway.

so, basically, we now have a child without the development to comprehend others. we have a child who either does not have enough stimulation through the amygdala to interact, or has so much stimulation that interaction is literally painful. we have a child who gets their senses confused and at the same time cannot filter the incoming information enough to narrow down the input into anything really comprehensible. this child is, obviously, going to be difficult to control and will likely be frightened often. it is very easy to picture the child more like a wild animal than a human.

the amygdala that doesn't function for us controls emotions. we tend to overreact. something kinda scary is terrifying. something funny has us running around in glee, laughing. something sad has us hysterical in tears. we don't learn how to react by watching the adults around us. we just get tossed around by everything flying through us. and all of this pumps more and more adrenaline and endorphins and cortisol into the system (causing or at least worsening all of those odd ailments we tend towards).

hand in hand with our lack of mental filters, we are lacking in physical ones. remember the amygdala regulates hormones? without good regulators, our bodies throw out too much of whatever chemicals they aim for. we don't create just a bit of insulin, we flood insulin. we don't get scared and make a bit of adrenaline, we flood the system. when we eat preservatives, we don't inflame a touch and flush it out, we flood the entire body with inflammatories and don't digest anything. or we go the other direction and don't bother making any of a chemical. then, too, we are so sensitive in our internal reactions that the chemicals around us effect us more severely, leading more quickly to the ailments that non autistic humans require years of accumulation to achieve. autistics tend towards early arthritis, blood sugar issues, thyroid issues, and digestive issues.

autistics don't do middle ground.

just in general. the world is black and white. we are opinionated, stubborn, and habit-bound. anything else leads to chaos because we have nothing to naturally ground us except for our rituals.

we don't create mirror neurons correctly (also due to amygdala issues) and so don't have the monkey see monkey do mentality of a healthy child and so we don't even realize we should mimic those around us. so we have no natural drive to try and learn the culture we are in. we can't watch children and understand how to interact with them. we will try to draw them, instead, into our world, which they cannot understand.

in our effort to create a structure that stays put and make sense of the topsy turvy world we find ourselves in, we lock ourselves in a separate world. we reach out to people and they don't know how to reach back. they don't always even realize we have reached out. an autistic child's life is full of rejections because of this. and they don't catch on to others' reaching out to them. so we are labeled unemotional, or unreachable.

we certainly connect emotionally. we just don't express it in ways others understand and/or are comfortable with. we don't get socially trained easily so we are more feral than our civilized counterparts. we connect to people and feel affection. it's just kind of bewildering since people don't respond right and they go away so much. we express emotions all the time but we're told they're all meltdowns or acting out or acting up. we don't know to lie and so we are mean or rude or harsh. we don't know to read social cues so we are shy or awkward or socially inept. however, we do tend to read the "lower levels" of body language civilized humans miss out on because we know we are animals.

other fun facts about autistics: we don't tend to label and box things by category. rather each things has attributes. this makes communication that much more difficult but it makes us much more precise thinkers. this is the same trait that has us memorize every breed of dog with fascination, or train schedules, or study every facet of autism.

we connect more easily to the simpler (ie non socialized) animals and are great with cats and dogs and most species that aren't humans. non human animals give us an outlet for our compassion and affection without fear of rejection.

we are exceedingly literal. i know i show examples constantly but i shall rely on people who know me to point them out with much giggling at some point. in any case, idioms and slang are difficult to easily understand and we take things at face value.

we create concrete metaphors. while we are very literal, we do make comparisons and they are often accurate and beautiful and poetic. many people say that autistics do not use metaphors because it is a creativity we are not capable of. this isn't true. normal metaphors just aren't logically sound.

so what things help autistics?

forced changes: if you let us settle into a routine, we will. and we'll never learn to cope with change. coping mechanisms only develop if you have to cope. mix it up. so what if there's a meltdown. that's just how we express ourselves. (i do realize if you are a full time caretaker of an autistic you are going to get burned out on the damned constant meltdowns) take the opportunity to slowly hammer into our heads that change isn't going to kill us (because that really IS the fear). pick and choose your times so that you have the time to help us through the inevitable meltdown, but don't be scared of it for the meltdown's sake. there is nothing wrong with panic. there is only something wrong with never learning your emotions and reactions so that you can take control of yourself. it will take us forfreakingever. we're developmentally delayed. delay is a huge frustrating infuriating aggrivating part of what we are. which leads to...

understand that the development is delayed. we aren't stuck or stopped. we are just really really slow. how "functional" an autistic is is much more a reflection of the rate of growth than anything else. i am 32 and mentally i'm about ten. i happen to have the education and life experience for my three decades but emotionally i'm still a child. the way i see things is very much through a child's eyes. i'm high functioning. if at 32 i'd only made it to four or five, i'd be low functioning. with enough time, all autistics will "outgrow" the worse of the "symptoms". some of us just have to live to be 300.

let us express our way. this counts for friends of adults as much as with children. yes, i'm sure it's lovely to teach your child to not throw a fit in the grocery store. i don't wanna hear some kid throwing a fit in public either. but if the behavior won't get you all arrested, let the kid emote however he really needs to. it's not like you have a neurologically healthy child and are just not disciplining him. let him find his own ways to self-calm or self-stimulate, let him learn how to get things out and therefore how to identify feelings. let him do weird stupid shit even though you can't see the point of it. the more we know about what all these crazy feeling things are, the less they will rock our worlds. autistics are quite capable of achieving a very zen like approach to their emotions and to life. i know change will happen. when it happens and i panic i simultaneously can laugh at myself and my reaction and therefore get past it. someday i might not even panic.

treat our bodies like endangered ecosystems. all bodies are ecosystems. we are a collection of flora and fauna living in symbiosis to keep our little universe well. some bodies are robust and can weather some pretty good storms and they'll get by. autistics are more fragile. our ecosystems are too out of whack to take the casual approach. we need organics (more likely to not introduce things like growth hormones to confuse our hormones, or pesticides to interfere with our chemicals). we need low carbohydrates (to keep our insulin levels low and therefore our cortisol, serotonin, and adrenaline more in line). we need no processed foods, no dyes, no artificial preservatives (i do great with salt and vinegar). we need a lack of medication (healthy bodies don't get a yeast infection on a single round of antibiotics; nor do they lose liver function on a week of tylenol). we need a minimum of chemicals (vinegar also cleans just about everything!). we need to keep our flora and fauna healthy (eating fermented foods and not antibacterial cleaning things). with our ecosystems stable, we are more stable. seriously: fewer meltdowns.

work with our logic. people want to train autistics to think like humans. it's a very cute idea that we can learn to work with your utter lack of logic. seriously, just work with us. we are concrete, serious, intense, logical creatures. if you pay attention, we can introduce you to a world of wonder where everything is awe inspiring and things fit together until everything is Right. i have been told the seriousness and intensity of an autistic is rather infant like. perhaps this is true, i haven't been around many babies. but we are definitely lacking a sense of "play". we can be light hearted and enjoy ourselves. we can create games. but there is definitely something not there that i see in others when they are "relaxing".

let us be us. most of us function enough to go out sector and act like productive humans. we don't understand it or enjoy it but neither do any of you. however, our concrete crazy brains are pretty spiffy. since love is simply affection and acceptance, autistics tend to be very good at a rather pure and simple love of everything around them. we can do the feral unconditional love very easily if people would quit interfering with it: friendship is easy on some levels for us and very difficult on the social levels. we can learn all the basics we need to get by at least as well as civilized humans. most of our "suffering" is because civilized humans are scared of us, not because there is anything wrong with us.

love us. we're a neurodiverse species. deal with it. it's you who are putting the labels and concepts of incapability on us. before you were calling us autistic, we were the crazy relatives in attics, the quiet neighbors with oddball collections, the obnoxious IT techs, the shy kids at school, the artists and musicians and poets and child prodigies. we all got by except those very few who you labeled as incureable and tucked into institutions. the same percentage of kids are still that disabled, but most of us are just folk. now you have spread that label in an effort to "help" those shy kids and now we are all told we are incapable and unacceptable. but we understand that the help was not to teach those shy kids to accept themselves and use their talents, but to help those shy kids make you more comfortable. we used to have a chance to really make it in the world. now we are crippled by your kindness until we learn to take drugs to fix our quirks and hate what we are because we are different and not what you really wanted. the label of autism has become a demeaning term, used as a blanket term for all those children who are anything "too". too hyper, too focused, too slow, too fast, too introverted, too quirky. you use the term to push us aside, instead of using it to draw us in. we call ourselves aliens because you alienate us.

those amazing people who are able to simply accept another as people don't have as many difficulties with autistics. we need not be handled with kid-gloves. enjoy the diversity.


Anonymous said...

Awesome job! <3

Jon A.S. said...

Hey Abi,

I love the whole essay....so true, so true..."obnoxious IT techies"...hehehe....at least I'm not...:-))

Jonas *cracks up*

Kristin The Greatful said...

oh abi... do you know how much frustration and researching and just plain "kill myself" problems you have just addressed and led me in the direction to fix? Researching autism itself is ridiculously hard and you just summed it all up in a nutshell .. an UNDERSTANDABLE, usable nutshell :) Maybe i have a starting off point now... Maybe i can start helping and understanding more than hindering now... cant tell you how much relief i feel Thanks so much.

Captain Capitalist said...

It took me years to realize why Max was watching Disney movie scenes over and over again. He was "learning by rote" as you say, how to react to different types of situations. When he found himself in a similar situation he would recite the lines from the movie, voice inflection and all. He was doing his best to express his emotions in a way we nuero-typicals can understand.

He's getting the hang of dealing with others though, slowly but surely. He's 20 now and still making progress. The fact that I know it must take conscious effort and concentration tells me he's very intelligent and working very hard to find work-arounds.

Abifae said...

thank you all :)

jonas, you are TOO an obnoxious IT tech lol.

kristin, make bethany read it too ;) i have TONS of links. i just put a few here and there but i have hundreds of sites about this stuff.

captain, max is definitely one smart cookie. with everything in the way he STILL manages to successfully communicate :) last time i was there his speech was getting SO much more clear!