After being asked by a friend about another friend's concern over poor nutrition during pregnancy possibly leading to autistic tendencies, this was my answer.
"I have been working up a personal history on myself that includes fetal information and a lot more detail at birth. I'm more likely to go with genetics than anything, but since I've raised a stepdaughter with fetal alcohol syndrome, we can't disregard the fetal impact at all. However, fetal impact, I think, results in lower brain function that can manifest in lower IQ, whereas autism seems to be a hard wiring problem which can manifest with a higher IQ (even though there are other obvious dysfunctions). So we have to be very careful not to lump it into a category where it might not belong. But I totally see where your friend's concerns make sense. I'll keep working on my own history and publish it this summer sometime."
Can an autistic child progress through the autism spectrum to a higher functioning level? Can a higher functioning autistic step over the line into ASD? Is the distinction more semantic than functionally diagnostic?
I once wrote out a prenatal and childhood timeline for my doctor, but the goal was an attempt to uncover possible root cause(s) of adult chronic illness. This can be seen at
Lyme, Lupus, and Asperger's, where we explore a combination of many things lending to chronic central nervous system problems, including positive tests for Lyme, Bartonella, Epstein-Barr, and more, plus a positive lupus test. However, the viral illnesses came later on during childhood and the lupus during adulthood.
But this history will be different. I have researched many questions I have about myself, and since I have so many years of experience, a valid timeline, and the value of hindsight, I think I can start answering some of those questions. Where does autism truly start? Can environmental factors intensify autistic problems? Or, conversely, do autistic problems intensify hypersensitivity issues in illness and other disease? Same question both way for medications. I believe that looking at my own history might help with these answers, since I have a somewhat unique family and childhood history that we can compare with younger children now.
Some people are worried that autism begins prenatally, and that perhaps it can be triggered by medications and other environmental influences. My family history is such that for 400 documented years on my dad's side, they are clearly culturally contained (Mennonite) without medical intervention, and oddly, many of them exhibit ASD behaviors to the point of it being considered normal. The culture itself deals with it very well, and trains its members to be self motivating problem-solving thinkers with a very different approach to socializing than what many Americans now think is normal. However, my mother is a sharp deviation from that culture. She came from 'city folk' with a clear family history of clinical depression going back at least 4 generations, and I know she was prescribed both darvocet and a tetracycline shot while I was in vitro, and that she craved sugary sweets during her pregnancy with me, naming fudgesicles and waffles with lots of syrup as favorite food cravings . The tetracycline stained my teeth, so that obviously had impact on me. As to the rest-- we don't know. These medications are no longer prescribed to pregnant women. I was around 6 pounds when I was born on my due date, but I had immediate problems. We'll never know if part of it might be from sedation during my birth, which was widely practiced at the time, and clear medical documentation on children on the autism spectrum wasn't around in the 60's.
The first thing documented upon my birth was fluid swelled up over the soft spot on top of my head, and it took days to go down. I have no further information on that, except that it has resulted in a condition called
Empty Sella Turcica Syndrome, which causes malformation of the pituitary gland, and can affect hormone regulation. Interestingly, I've been on thyroid medication since my 20's for Hashimoto's hypothyroidism, birth control since the same time to control endometriosis and other female problems associated with insulin hormone resistance, some of my current chronic illness could be in part from a cortisol malproduction, but I've had no problems with normal growth or breastfeeding my child. I did not find out about Empty Sella Syndrome until my 30's during a CT scan, which was one of many CTs and MRIs done over the years for very bad headaches that mimic everything from migraines to strokes and tumors, along with making sure I am not developing multiple sclerosis, of which I've also had some symptoms but no clear diagnosis. It might be interesting to note that diabetes runs rampant on my mother's side, and greatly affected her as well, but I have never had any sign of it, although tested many times.
The very next problem I had as a newborn was severe projectile vomiting. I was told I could hit a target 3 feet away with great precision. It was so bad that they did tests to rule out cancer of the stomach and the pyloric opening at the top of the stomach. I lived on an antispasmodic called
Donnatal (two anti-cholergenics combines with phenobarbital) the first 8 years of my life just to be able to eat. (Read more about these drugs at
Treatment of Irritable Bowel Syndrome.) I had a barium enema at 6 years old confirming I had ulcerative colitis. I've spent most of my adult life on Librax (anticholergenic combined with a drug in the benzodiazepine family), and am now dealing with protracted withdrawal trying to get off it. An endocrinologist has lately discussed the possibility with me that being a CF (cystic fibrosis) carrier might have been manifesting all these years in the form of a digestive disorder, since I make mucousy stools and bloat so easily. I have all the same digestive complaints as a person with cystic fibrosis, and I take enzymes and use specially formulated protein that is more easily digestible. But I'm also finding out that people on the autism spectrum tend to have digestive problems, as well. Probably another thing we'll never know the real cause of. However, I know that I do not have celiac disease or lactose intolerance. Some have suggested a possible sensitivity to high salicylate foods, and I seem to be salt sensitive as well, but still, the only thing that holds true under all circumstances is the typical IBS list of food intolerances.
So far I am a really complicated person... It gets way more complicated.
I never crawled- I dragged myself with my arms. When I finally started walking, I refused to walk any time people were looking at me and clapping, and this in itself was noted by my mother every time we looked at baby pictures, so it was a persistent behavior. I refused to do anything with people looking at me, which was already very notable by the age of one. I was very difficult to potty train, and had screaming fits over any kind of bathing and hair washing until I was nearly in kindergarten. By 3 years old my mom had friends over to peek at me through a doorway, whispering about the way I played with dominoes for hours. By 4 I had crawled up onto a bathroom sink and OD'd on Liquiprin, which back then was aspirin (now it is acetaminophen), and had to be taken to a hospital, so I suspect even back then I had bad headaches. I remember doing that, but I never told anyone when I hurt, unless I was screaming after doing something very klutzy and unexpected, like getting a finger caught in a folding chair, or racing to a door that someone was opening and having my toenail ripped off under the door, or jumping off furniture or something outside and impaling myself on sharp objects. I got hurt so often that my mother introduced me as The Screamer (to polite laughs). I look back and see that I was very clearly deficit in any understanding of cause and effect, and didn't learn from my mistakes for several years. It also seemed I was constantly vomiting during birthday parties and car sickness to the point where I was a real drag to take anywhere. These experiences, in turn, made me irritable because I never felt well, but I don't recall ever saying aloud to anyone what exactly I didn't like or felt bad about. I think it was left up to everyone around me to guess.
During this time my mom took me to several doctors with concerns of me being 'barely autistic', and not only was she laughed out of the office, but also told she was a bad mother. Back then there was no autism spectrum, simply just nonverbal unresponsive autism. I was verbal when prompted, I could look in someone's eyes when told (I hated it and didn't smile), and I could follow basic commands. I was "fine", and my mother was clearly seeking negative attention, according to the doctors. She went home crying from some of those visits. Sadly, she dumped her anger out on me, because at home I had no problem sassing her back and questioning everything I was told, a demanding and highly judgmental Elephant's Child with insatiable curiosity.
Kindergarten was a bit of a nightmare. I was in so much trouble all the time that I was moved to a different classroom, and after that I got worse because that was such a surprise to me and I didn't understand it. I did spontaneous things without thought about consequences, like cutting a little girl's hair off in the back close to her scalp (I wasn't allowed scissors after that), or dumping glue on another kid's project (the glue was taken away), and never coming in from recess (which I talk about in the post
self stim). I cried a LOT. I think the teachers were at their wits' end. My mom told me over and over I was supposed to learn to keep my hands to myself, but I had to touch everything everywhere we went. She slapped my hands a lot, and I remember being dragged around by my arm sometimes. I was a terrible embarrassment to her in department stores.
First grade was only slightly better. My teacher got after me constantly for not following directions. I understood them, yes, but changed them to suit my whims. On one paper, we were supposed to underline 'g' words. I put the lines through the pictures, so that 'goat' looked like it was standing in water. I didn't get credit for knowing my 'g' words since I didn't underline properly (it looked like I was marking the goat out as a wrong answer), so things like that got me bad grades. The teacher never asked why I did that, and I never thought to tell her, even though I was angry because I knew the answers and still got red checkmarks. I wouldn't come out of the coat closet on bad days, wouldn't come in from recess, finally had my desk moved up to the front right next to the teacher's desk (which made everything worse because the entire classroom was looking at me, which made me a nervous wreck and I couldn't stop stimming, which aggravated my teacher all the more). Finally during a parent-teacher consultation, the teacher suggested my parents get me to a psychiatrist. They were deeply offended, mostly because my dad thinks psychiatrists are charlatans and there is no such thing as 'psychology' except as a method to control people and do experiments on them. So I never went. This complete misunderstanding between me and the teacher continued all year long and culminated in many bad memories of other children teasing and taunting me at every chance, of being fussed at continually for not doing things right, and of always being confused. I never thought to question why any of it happened to me, and I never thought to get angry and fight back. To me there simply was no meaning in the exchange of communication. It was random and made me miserable, and I only wanted it to stop and didn't realize that *I* could make it stop.
By second grade I clicked into academia and soared, thanx to a patient teacher using phonetics and visual games that turned symbolic words into visual representations. Everything else in my life was horrible. I had no friends, didn't know how to even try having friends, and didn't even think about wanting friends. It wasn't long until some of the kids started torturing me, which is sad to look back on, as I remember being told I was the shortest child in the classroom after we were all measured. I never told on them. I never thought to. It made them angry when I didn't respond the way they thought I should. I discovered all I had to do was stare at people and not say or do anything, and it would creep them out enough to make them back off sometimes. Other times, however, just weren't pretty. I was shoved around and knocked down and laughed at. Even back then I puzzled over why they thought it was ok to be mean to me, but it wasn't ok for me to just stand there. On the other hand, I loved my pad of paper, my pencils, my crayons, my books. I loved the smells of the classroom. I wished I had my own chalkboard and chalk at home. I loved the work we did-- writing sentences, spelling, addition and subtraction, and especially loved all the rules that came with them. Looking back on that part, I can see now that symbolism itself was an entity I could be in love with, surround myself with, interact with. I still had no clue how to apply it to being with other people...
I eventually picked up on interaction in the 3rd and 4th grades, and gradually lessened my stimming in public. I found out that information sharing was useful and fun (at least for me). But the kids still didn't like that. I was a know-it-all, which I found surprising. Anyone could know anything if they paid attention. But they took it personally because I had no clue that it was nicer to begin a conversation with something about someone's dress being pretty, or noticing that they did something cool on the playground. It took me years to learn to compliment others, since I didn't understand anyone (usually strange adults) complimenting me for some unknown reason. I earned a compliment from a peer in the 5th grade when I very happily gave my first speech to the class about what life on Jupiter would be like, complete with a crude model of an alien I made from a toilet paper tube. A boy in class actually complimented me, and I had no idea how to react, so I simply didn't. I wrote my first essay in the 3rd grade on pig farming (we didn't have pigs on our farm, so I was curious about them) and got a good grade, and I wrote my second essay in the 6th grade on Communism, since I heard it so much on the evening news, and also got a good grade on it. They were very simple essays, but I managed to grasp introduction, body, and summary, and Thought was born to me. If this, then that... I began to ask deep questions (in my mind, never aloud) about how light works, and once did my own spontaneous experiment waving my hand in front of a projector, noticing the shadow of my hand got dim, but never failed to completely stop the light. In theory, moving my hand fast enough should have created a better shadow and stopped more light, but it seemed the opposite was happening, the shadow just grew dimmer until it was nearly gone. I was moved away from the projector... Years later I would drink in research on light experiments in books written by top physicists and wonder how come so few of us cared about these things.
During those years in grade school, my dad had me practice reading aloud out of encyclopedias at home. I did not realize I had a very monotone voice, and he worked with me on making it fun to read, pretending I was a reporter or narrator telling a story. I learned to interject inflection and tense, to bring emotion to content, even though neither one of us had any idea that's what it was. Later in life, one of my earlier jobs was making ads for a radio station, and I was always hailed as a good reader and public speaker, even as a child, and I enjoyed reading aloud in class when called on. Oddly, I never seemed to have stage fright, partly because I had no care in the world about how my audience might feel about me. I was entertaining myself, and that was all I cared about. When I received compliments, they very rarely went to my head since I was not trying to earn them in the first place. I knew I was good because I worked very hard at it, and I enjoyed being good at delivering a public monologue. I could have been a robot and been just fine with myself, as much as I seemed to lack the need for public support. I was never a classroom clown trying to elicit laughs, never a drama queen out to get sympathy or applause. My love of oration was simply that, thought streaming into words. One of my sisters coined the term "word construction" for her own daughter's unique writing skills, and that's exactly it. I love word construction. Several people have insisted I am savant with the printed word, and indeed, I can type out many pages very quickly with very little fixing. However, that also is my doom and major complaint from others, that I write 'books' in my emails, drowning the simplest of answers in 10,000 words. I'm working very hard on simplifying my text for easy and quick reading. It's not easy. I feel like Mr. Data sometimes.
By middle school I was clearly lagging behind in emotional maturation. That is, even though I was beginning to develop interest in other people, I certainly didn't show it, and I was so out of the loop in the whole girlfriend-boyfriend thing and social activities that no one knew how to speak to me at all. Anyone that tried was immediately stumped and never came back for more. I don't recall being purposefully mean, but I guess I was pretty blunt. I stated the obvious, without inhibition. One of my teachers told my mom I was an "intellectual snob", and another teacher complained that I thought I was too smart for her class because I would finish my work quickly and then didn't hide that I was stultifyingly bored, although I thought I sat still and quiet. I never knowingly expressed these attitudes, but I guess they shone through like neon.
During all this puberty-aged school, I had developed a weird behavior. My mother was so appalled at my autistic stimming (what used to be called fidgeting, I think) as a child that she, bless her poor heart, used many punishments to make me stop. I never understood what she was telling me to stop doing, because it was handled with my arm being jerked along with a hissing "Stop that!". Or, if in private, she would spank me very hard with a paddle. I was dragged into the church bathroom many times, jerked hard in stores many times, spanked at home many times, and I finally (after years) learned to just simply stop moving at all. So by the time I was in middle school being an 'intellectual snob', I was also holding rock still for hours and hours a day, frozen in place in my desk, carefully monitoring every move I made walking and carrying things, trying not to breathe too noticeably sitting at my desk. I became uber aware of monitoring myself like an obsession. It didn't matter if I was on the school bus or at a football game, I just sat there and didn't move. This carried on well into my adult life, causing a neverending supply of tension at all times. I couldn't even begin to understand this problem until I learned about Asperger's syndrome a few years ago.
Fortunately, I was allowed to get away with some of my fidgeting at home when we weren't out in public embarrassing my mom to death. I was so unaware of my hand flapping that I didn't realize I do that until my 40's, when I read something funny that someone wrote about hand flapping when caught in a surprise or flustering moment, and I thought hmm, I think I do that... I asked my sister if I flap, and without a word she just smiled real big and mimicked me. All these years. Wow.
Ok, back to the whole autism thing. During grade school and middle school, there were a series of shots that were becoming standardized. I found out later that I was accidentally given the whole polio regimen twice as a young child, by two different doctors. That caused concern as later in my life there was rumor that polio vaccines may be causal for lupus and stuff. Personally, I don't think so. There was no immediate change in me at the time, and the lupus came years later. I remember measles shots were given at school when I was in 3rd grade or above. By then my parents were doing the no-doctor thing, so my mom wrote a note exempting me from the shot. I never had a measles shot, but got measles later in high school, so I can definitely say that had nothing to do with triggering my autism. Since I was like this from the start before I was ever inoculated (back then they didn't inoculate babies), and since my dad's family all seem to exhibit many signs of Asperger's without having had inoculations, I'm pretty sure in my mind that vaccines don't trigger autism. I also met a distant cousin who developed severe retardation from having the measles real bad, so I could never say it's safer not to be vaccinated. Likewise, since my communication and interaction skills have improved over the years, I also don't believe inoculations enhance autistic tendencies or symptoms, even in the short term. Allergies to something in the shots might do that to other people, perhaps (I have a sister who is allergic to eggs and can't have shots without becoming very ill). I've also been receiving flu shots for years with no cognizant after-effects, which, if they really could make autistic tendencies appear, should have been triggering noticeable worsening of my Asperger's all these years, at least even sporadically. They sure have been triggering trigeminal nerve response since my Bell's Palsy 5 years ago, so I can understand others having anxiety about vaccines, but again, I've never experienced actual damage of any kind from any vaccination.
Also during these younger years, I was exposed to several pretty hefty viral and bacterial infections that were never medically treated, and only confirmed years later as I carry the antibodies in my blood. The two biggest infections were Cat Scratch Disease (Bartonella) and Epstein-Barr. Some people are exposed and feel sick for a little while and get over it, other people get more ill and then have lingering chronic illness the rest of their lives. Bartonella (bacterial) attacks the nervous system and can trigger things like Bell's Palsy, but can be treated with antibiotic. Epstein-Barr is a virus and may continue to live in a semi-dormant state along nerve pathways, much like the herpes viruses connected to Shingles and Bell's Palsy do (which I've also had as an adult). I remember being fairly puny once in awhile during the child and preteen years, once to the point where my armpits swelled up like balls and I couldn't put my arms down. I hurt real bad all over (my lymph system must have been swelled up and inflamed head to toe), felt very tired, and had high fevers. Never saw a doctor for it, because my parents didn't believe in doctors then. I can't say this made the autism worse that I can see, but I have to wonder if the autism had an impact on how I handled being ill. I was considered to be a whiny child since birth, but since I was nonspecific and tended to not bother anyone much if they just left me alone, I suffered through illness that might have had other kids screaming and complaining much more than I did. My malaise from being ill was 'pumped up' with handfuls of vitamins, probably to the point of toxicity (which I discuss in previous posts). Much of my childhood in terms of illness are only very vague memories for me, blurry recollections of misery. I think I should add that I was so trained to 'be still' in public that I became an expert in hiding pain, and have gotten through debilitating chronic illness in my adult life simply by not realizing I had a right to complain and seek comfort until I felt I was nearly to the point of death. Even doctors have expressed surprise that I didn't attempt to seek out disability compensation many years ago.
Just as I was going into high school, we moved to another state. Night and day. From the desert to lush rocky Ozarks. From rattlesnakes and scorpions to copperheads and millions of bugs. And ticks. My next malady during high school was Lyme disease, which, again, was never treated, and also can live in the nervous system for the rest of a person's life, sometimes causing progressive problems later. I also got measles in high school, so by the time I was a senior, even though I'd been a very active child growing up on the farm, I lost some of my strength and endurance as my joints grew stiff and breathing became difficult and very painful, and also developed occasional tachycardia (SVT) around this time. I never told anyone. By this time I had learned it made no difference to complain to my mother. Just drawing a breath while sitting in class was so painful that I look back now and think pleurisy, an inflammation of the lining around the lungs. I was treated for that some years later with strong antibiotics and nsaids after I tested positive for lupus.
I don't know if feeling ill so much affected my autism in high school, but I definitely didn't feel like interacting with others more than I had to. I became more withdrawn and somewhat more 'arrogant', and when I did talk to anyone they usually found me fairly irritating (one girl slapped my glasses right off my face). So I simply rarely talked, excepting to a handful of students on the 'fringe'. I rode the bus until I graduated, resulting in severe motion sickness and bad headaches every day, but I never told my mother. I felt telling my parents anything by this time was useless. They were so calloused to me being whiny and having problems, and so deep in their own worlds that when I finally did beg my mother to let me drop out of high school or go see a psychiatrist, it fell on fairly deaf ears. I realize now that she felt helpless herself, as my dad was intensely consumed with a zealous 'end of the world' prophecy, and lapsed into waiting for the rapture and tribulation, which was all the rage with radio preachers in the late '70s.
I realized somewhere during 11th grade that I knew everyone in the hallways at school by their knees. I noticed that other kids were looking at each other's faces and smiling and talking. I noticed I didn't do these things. I made a point to try looking up more, to try to look at the faces around me. I still didn't realize I had no expression in my own face, or what probably looked more like a sort of Vulcan distaste than anything. (I expressed myself much more freely at home, but even then was probably far below normal in social expression, unless I was laughing.) I started listening to the chatter around me and couldn't believe how silly it was. I noticed some of the kids picked on others like it was a fun sport, and those same kids seemed to be buddies with the teachers. I noticed that the world around me was very unfair, and it made me angry. I started doing things... I locked a biology teacher's keys in his briefcase after he ignored me asking a question. When he panicked I simply picked the lock for him with ease, and he never knew I was the one who locked them up in the first place. A physics teacher picked on me incessantly for not doing my homework, so I beat him at his annual Pinewood Derby. No student had ever beaten him. My paper explaining how I beat him got a good grade, but he pulled me aside and told me to either drop his class or take a failing grade. I dropped the class and never told anyone on the faculty, not because of fear or anything, but because I simply didn't care beyond having a solid contempt for sitting in that man's class. A college prep grammar teacher pulled me aside and told me I had the potential to do better, so she was going to give me a C so it would look better for college. Did she expect me to thank her for cheating for me? I was falling through every crack and still ranked in top 3rd percentile on the aptitude test without even trying. I went out of my way to break into private files in the counselor's office and get addresses, and started having all kinds of things sent to teacher's houses. After that I started in on students who annoyed me. After that I started sneaking things into people's lockers. The more I could puzzle them, the more they wondered aloud in the hallways, the more I felt vindicated somehow for being so ignored. After that I simply became destructive. After a chemistry teacher announced a test the next day with no study period before hand, I broke into the empty classroom and taped up every piece of glass I could find, along with the desks, in a giant web of tape that took all period to remove. No test. No one ever found out who did it. No one ever suspected me. No one even talked to me. I graduated high school with two actual friends in my life, but I think it was more because I was quirky and useful than for any other reason. However, I never told either one of them the things I'd done, so I couldn't have been that into our friendships.
I'm going to stop here with observations about being autistic and functional in society.
Just because someone can respond verbally and ace all their tests doesn't mean that they can cognitively distinguish other people's problems and motives, much less question them. I saw conflicts in behaviors all around me that didn't make sense.
I've always had thoughts that I've struggled with, because the world is so fragmented when it comes to other people talking. It's like the reality around us dissolves in their heads and they become so obsessed with their own feelings that they can't see the world as it is any more. Maybe that's why I like Vulcans. I just know by the time I was 7, I was already arguing with God about Him throwing me down here and saying I'd go to hell if I didn't do it right, which are logic and abstract concepts that normally don't develop until around 12 years old. I just never thought to share any of what was in my head. Even at this point in my life (I'm 47), I have no context looking back on being young and divining where I was on the autism spectrum. I was capable of interaction, but incapable of executing it very well, if at all in some ways. I was capable of understanding concepts, but incapable of connecting dots that applied meaning to those concepts. I feel like I was more like a pinball being randomly shot around a pinball machine, with no idea I could change direction or avoid the flappers.
So this next bit where I skip to college is going to be a really big deal.
I won't go into the detail with college that I did in school, except to say that three different communications classes converged in my brain to connect a ~whole~ lotta dots in my little social deficit world. The main key opening the door for me was the chapter discussing communication as an irreversible function between two or more people, which I was immediately able to plug in as a math function f(x), which concept I completely understood. When one person (or variable) inputs (speaks), it affects another person, who then speaks, and as each person adds to what came before, the total of what has been said is no longer reversible. If someone says something that makes the other person feel good about themselves, and that person responds positively, for instance, the conversation becomes a directed function, with predictable results. I had never realized before that speaking to someone could actually be sifted down to interlocking parts, like when you diagram a sentence. A pleasantry, which I used to see as unnecessary and sometimes untrue, is a setup for a function to begin, or what people call an exchange.
In case you just missed that or glossed right over it, I think I discovered the key behind autistic communication deficits.
Part of my difficulty, even though I love the function framework idea, is that I still don't recognize that pieces of communication fit together well. I can be having a marvelous conversation with someone who seems to be enjoying the conversation as much as I am, and all it takes is a misinterpretation on my part to grind it all to a halt and a quick goodbye and the feeling that was it, I blew it. Usually it's an attempt at humor that kills it. I have a sense of humor, but I think it's different from 'standard', and if someone isn't familiar with the way I think, maybe they interpret what I said far too personally when I didn't mean it to be personal at all. I have spent years practicing conversations, and although I can get through lunch with someone as long as I stick to strict rules of shallow engagement, I cannot get through another hour of chitchat without killing the function completely out somehow. My longest friendships have survived in short snatches of conversation, but in the end, they all die. Not sure how, or why. I try to analyze it, but I've come to the conclusion that my angle on communicating is so skewed to begin with that I just can't see it on my own. My sisters and I get along fine, and they've also expressed a little difficulty with tolerance in friendships, even though they are much more aware and interactive with normal society than I am. I've lately been seeing a psychologist who has helped me see that I am so naive that people easily use me without my being aware of it. Maybe the other person needs affirmation or emotional sport, and when they get what they need, they are simply done with me, and I don't know why I'm left hanging. One friend of mine actually spelled out that she was toying with me to watch my reactions. It took several years for that to truly sink in.
But back to back then. While I was in college I decided to see a campus psychiatrist. What I wound up getting was a practicing student who asked me all about my mother and we wound up locked in a frustrating loop because she was too inexperienced to step out of the box with me. Of course I was frustrated with my mother, but I went for help with my whole head, and being neuro-atypical never entered the equation since I passed an MMPI with flying colors. So at least I knew I wasn't insane. But I quit going.
I began my advanced degree in guidance and counseling, mostly because my college didn't offer anything advanced in the anthropology department at the time. Since I got my degree in sociology with an anthropology minor, and had taken so many extra classes in psychology, political science, and world religions, an advisor tried to be helpful and encouraged me to try the guidance and counseling department. I hated it because I could tell that most of the students who wound up pursuing that masters degree had spent their lives on the counselor's couch, and it seemed to me they weren't challenging themselves with anything more than becoming leader of the lingo, as it were. But I did learn things. One of my classes was about doing psychological evaluations, and we went through all kinds of testing before we learned to administer the tests on others. My teacher was a regional child care psychologist who tested children all the time, and he said in all his 20 years he'd never seen results like mine. In fact, he said if he hadn't met me in person and had only seen the tests, he'd have pegged me for schizophrenia, but I was obviously mentally and emotionally healthy by all other standards, with a slight tendency to aggression (on paper). Little did either of us know at the time that other people with Asperger's were being misdiagnosed as having schizophrenia... Less than five years after I took that class, the autism spectrum became medically valid, and Asperger's was listed with medical criteria for being on the spectrum.
I have a cousin with schizophrenia, and I've met several people with schizophrenia through different jobs I've had (mainly hotel desk clerk, when police bring wandering citizens in from the cold and rain). As I've said in a reply to a comment elsewhere, "The original defining difference between autism and schizophrenia is that schizophrenia has 'onset' and illness progression, and autism is an underlying preset condition without further progression. Autism is a hardware problem, schizophrenia is a software problem, if you will. If it's that easy to 'trigger' a brain malformation, then I would think we'd have mutant brains of all kinds running rampant. I'm all for looking for fetal development triggers, since alcohol has been shown to have deleterious affects on the fetal brain, but autism seems to be more a hardwiring problem than a miswiring problem."
The last couple of years I've been watching a media frenzy around autism, and people responding with so much fear, it's almost like watching a belief in voodoo and witches come back to life for the terrified masses. I mean no disrespect to anyone, but coming from a childhood where I was barely functional on a social level and now write reams of research with ease, I'm having a hard time accepting that this fear is valid. Personally, I can't understand why Fetal Alcohol Syndrome (FAS) isn't in the news, because THAT *is* totally preventable, just as devastating as any other childhood affliction, and a huge drain on families and the welfare system as well. According to the CDC, "...studies show FAS rates ranging from 0.2 to 1.5 per 1,000 live births in different areas of the United States. Other FASDs are believed to occur approximately three times as often as FAS." I would posit that it may be possible to misdiagnose FAS during this autism frenzy, just as autism used to be misdiagnosed as schizophrenia. Since I raised a full time step daughter with FAS, and since I was able to advocate for her with my own personal experience with autism and my sociology degree, I can see where frightened parents might be pushing doctors to diagnose their children at younger and younger ages, and where these misdiagnoses could skew the autism debates wildly off course. My step daughter was diagnosed in the second grade with severe ADHD, but that was only part of the problem in the long run. My long experience with doctors in every field between raising her and getting through my own central nervous system afflictions is that 1) every doctor focuses on their own interest and many fail to see outside their boxes, 2) many parents and patients are eager to 'treat' and 'fix' before they fully understand what might be going on with their child or themselves, which takes time to observe, and 3) many doctors blow off patient or parent observation and still confine patients to a standard diagnosis when the problem might actually just look like one thing and be another.
There is no harm in being patient when you're not dealing with a life and death situation. Observation is going to go much further over the years than other people seeing a child for a few minutes and telling you what's wrong. I'm sorry I sound pert and blunt and indifferent, but after having a niece grow up with cystic fibrosis, which is a terminal label from birth, and then die from it after 20 hard years, I might have a different perspective on whether autism is so terrible. Disappointing, yes, sad, yes, but perspectives can be adjusted. People buy pets all the time and deal with the problems that inherently come with odd breeds or wacky situations, so I really don't understand why there can't be more tolerance for people that come in more varieties. One father I met said of his autistic daughter that she was the easiest child on the planet to raise. This after two other normal children. Maybe he got lucky, or maybe it all worked out because he accepted her the way she was, I don't know. I was a screamer myself, and hard on my poor mother, but in the end, here I am. She was so disappointed in me most of my life that she never learned to appreciate my accomplishments. I can't tell parents often enough that your autistic child is probably recording everything you do and say and will someday fully appreciate the hurt and pain he or she caused in your lives, like I have. It was a terrible thing for me to realize in my 40's that I 'ruined' everyone's lives all around me because I were such a burden.
I have no idea if this will help anyone, or simply add to the debates I see all over the internet. But I myself have not only survived an autistic childhood under duress, but have learned to succeed in anything I try and make decisions about my own life. It took extra time, yes. It's hard, yes.
What is the autism like as an adult? I carried my idiosyncrasies from my childhood into adulthood. I was afraid for years of being myself in public or in front of my own children, so I continued to hold rock still in church, continued to uber self monitor on jobs, constantly picked on every little thing I did, measuring it against whether I was being offensive to anyone. What I didn't realize for many years is that I, by my very nature, am offensive in ways I still can't conceive because I don't naturally fit into normal crowds, don't make friends easily, have difficulty with empathy and patience. Over the years I've learned to compensate, but I still shine like neon when I think I'm invisible, and I'm easy to pick out as the weird one in any room, no matter how I act or talk. I had no idea for years I stick out like such a sore thumb.
I still have plenty of questions that will probably never be answered, but my life history stands as useful material for consideration. Autism may be a chicken and egg question, and perhaps, as one doctor has told me, maybe 20 years from now we'll know much more about the nervous system than we do now. Since the brain is the center of the nervous system, I've concluded that my hard wiring is too 'on'. I'm much too aware of sensory input, overwhelmed and overcome by it, and I believe THAT is the root of autism and its resulting behaviors and deficits. No doubt I am one of the lucky ones in that I am finally able to verbalize it well enough to communicate it. The debates that interruptions in the body (vaccinations, for example) can trigger something that significant seems ludicrous to me in the face of so many other kinds of accidents that don't. Autism and my illnesses both play on my central nervous system, but I have never discovered that one could cause the other. I think they can affect one another, but that would be more in my behavioral responses than in automated physical responses. My psychologist introduced me to the concept of
psychoneuroimmunology, which I think is very helpful. Autistic children stress out far more easily than neurotypical children, which expresses itself as physical harm to the body in the form of pain and illness. I have never known freedom from pain throughout my central nervous system since my birth. Perhaps not all people with varying degrees of autism experience life as pain, but I would posit here that awareness itself can be painful in many ways, and that maybe the biggest challenge for anyone with autism is learning to juggle and balance an onslaught of sensory input with social interaction, and if the brain is already overwhelmed, the capability to be a social person may be significantly decreased. And this may logically apply to all overwhelming situations, even for neurotypicals. I see autism as being overwhelmed. These are my conclusions based on my experiences as a higher functioning autistic person who has lived nearly 50 years.
This is a response to a comment elsewhere during an argument two other people were having on Autisable. "I think the humorous side to this is that the traits of the cognitive disorder are being argued with the person with the disorder. Isn't it deliciously ironic that a person with a cognitive disorder (I would call it more a neural and social deficit disorder) is cognizant enough of this disorder to be able to debate it? Possibly a point being missed here, and possibly exactly what the roots of the discussion rest on. And even more humorous is the neurotypical personality traits of the person with the disorder are what is inflaming the conversation, and the person without the disorder is expecting the person with the disorder to 'behave'... This is a blatantly obvious flaw in establishing criteria, and the root of the neurodiverse movement."
When I was born, Asperger's did not exist in the medical world. Thirty years later it did. Perhaps in another 20 years we'll understand that it's not so much 'caused' as is simply a genetic variation, like many genetic challenges in our world. Kids are born with cystic fibrosis, it is not caused by an outside agent. Kids get cancer, something causes it to trigger. If there is a 'cure' out there, it won't be the same as curing either cystic fibrosis or cancer. The cure would necessarily change the entire brain network. There is no cure for schizophrenia, which has onset. Perhaps there will be no cure for autism. Until someone can prove scientifically that autism can be triggered by outside agents, I have to believe, by my own experiences and lifetime medical history, that it is genetic. Many genetic problems are adaptations to environmental pressures.
Survival of the Sickest: A Medical Maverick Discovers Why We Need Disease Perhaps our society resting on the 'invention of the wheel' is a testimony to a rogue brain network with weird ideas and a social deficit...
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