In the 1970s, roughly 1 in 5000 children had an autism diagnosis. At that time, children like me really were rare. They were also often treated poorly in the school system or, if their autism was severe, institutionalized and deprived of basic freedoms.
Today?
One in 50 children has an autism diagnosis.
Now I will agree some of the increase in diagnoses comes from greater awareness of ASD and a parental desire to access the services available to children with this diagnosis. This does not mean, however, that a physician can conjure a diagnosis of ASD where none exists just so a child can get extra time to complete tests and receive a few sessions of speech and occupational therapy each week. Despite the belief that being mildly quirky will qualify a child for a diagnosis of ASD, there actually are specific, extensive criteria in the DSM that must be met. If the child doesn't meet them, the diagnosis will not happen.
I do believe children with ASD were missed in the 1970s. But honestly? I think many children that meet criteria *now* are still being missed. As much as people may believe parents want to maximize the special services their children receive, parents also have a nearly pathological need to believe that their children are preciously perfect darlings who outshine all the other children in every possible way. Unless a child's ASD is fairly severe, parents will avoid the stigma of a diagnosis for themselves and for the child.
I don't know if that's good or bad, by the way. I really hate labels. And dropping the Aspie label on someone tends to eclipse everything else about that unique, beautiful, living being. While understanding why, precisely, you are so different from others might bring some solace, it won't actually change the fact that you are that different. It might, however, let you know that you'll have much better success connecting in friendship with other people who share your own traits.
That's a topic for another post.
Today I'm hitting prevalence. And it really, truly resembles a speeding train at this point. I'll say it again: I do love my Aspie brain.
But then I have to say this: being autistic hurts. It doesn't just hurt me--although it really, profoundly does--it hurts my family. It hurts my friends. I do not act the way that even I, myself, would wish sometimes. I am often shut down by my fears so completely that I can barely function. Until I gave up gluten and began supplementing with vitamin D, I was so terrified of spiders that the sight of them made me cry and left me unable to re-enter the room where the arachnid had been spotted for HOURS. My fear of damage inflicted by UV light kept me wary of venturing too often outside during sunny days. Crowds of people filled me with a dread that only a stumbling horde of zombies would justify.
This hurts. It makes me run away from crowds--I mean that literally. I have done it more than once. I have abandoned friends and family at gatherings and retreated to the bathroom to escape the mob. This is cowardly behavior and it lets friends and family down. I also sometimes take directions literally and thus mistake a person's intentions. I use too many words when trying to explain things to others. I am defensively controlling when people's actions threaten a part of my daily routine that feels fundamentally important. (For instance, I always sit in the back corner of a room. I don't feel safe if there are people behind me. I try to arrive early to secure this spot. In classes, I assume that people will respect my tendency to inhabit a certain seat. When, on rare occasion, I arrive a bit late and someone has taken "my" seat, I am unsettled for the rest of the day. And even if I don't say anything to the person--and, honestly I never do--I'm still angry about it in a way that's wholly unjustified.)
And if someone eats crunchy food around me? Oh, my heavens, the world could crack from the intensity of my agony. I have no doubt that my misery is transmitted from my face and posture. If I cannot escape the room, then I make people feel bad about doing things that are in NO WAY bad. This is unfair. I know it. It's completely my fault. I own it. I still cannot control the fact that I want to kill either myself or the chewing person if that person is chewing crunchy nuts. It's just the way it is.
I also cannot sleep most of the night. Every night. For my entire, hopeless life. Yes, that's right, Buttercup. Autism isn't all deliriously happy interest in dinosaurs and an encyclopedic knowledge of train departures and arrivals. It's also insomnia, anxiety, phobias, sensory sensitivities, loneliness, and hurt, hurt, hurt, hurt, hurt, hurt, HURT.
Still not saying I'd trade my brain. No. Just saying that this epidemic of ASD isn't just flushing the halls of computer science, physics, and engineering with gifted students, it's hurting people.
Parents worry about their children. Siblings resent and worry about their sibs with ASD. And while we might be good employees in some ways, in others we are certainly sub-par. I *still* take people's words too literally. I have a BA in English. I certainly understand idioms and irony and sarcasm. Sometimes, when I'm tired and feeling ill, however, my Aspie brain overwhelms my finer understanding of human communication, and I just plain FAIL at grasping the true meaning of people's sentences.
Having Aspies in the population is probably a good and necessary thing. Without us, computer science and physics and engineering would suffer noticeably. At present, however, our numbers are stupidly, painfully out of balance with the neurotypical population. As high-maintenance and neurotic as most of us are--and I'm owning that and apologizing right here--we will just plain decimate the happiness of the human populace if our numbers don't decrease with the passing years. We are TERRIBLE romantic partners for neurotypical people. I doubt we're excellent romantic partners even for other Aspies, but at least we understand and respect the quirks that make us difficult. Yes, Microsoft and Intel would be shades of what they are today without us. Frankly, I suspect that animal rights' movement would also be miniscule if not for us.
Nevertheless, our numbers are too great. Right now, we are bringing society down. We don't *need* this many people writing code, fathoming quarks, and designing better inline skating tires. We need more laid-back, happy, non-thinky people who can sleep at night and not get into car accidents during the day.
I love us, darnit, but it's still true.
And something way worse is also true. The ASD population? Our brain-damaged selves? We are a marker for something far more sinister. I was actually intending to make that the subject of this blog, but I tangented. Sorry. That's another lousy thing people with ASD do. Our tongues just ride the rails of our thoughts and lead all the heck over the entire mental landscape before they finally get to their intended destination.
From L.A. to San Francisco by way of New York, Miami, Kiev, and Dresden. Sorry.
~This blog post was brought to you by the letter A.
Tuesday, March 11, 2014
Monday, March 10, 2014
Autism Becomes Me
Once upon a time, I was just me: just some girl a bit afraid of the sun and spiders, but with a stunning recall for Harry Potter minutiae and a rather impressive ability to comprehend scientific concepts. I blended into the human soup of my little town with an ease born of years of practice. When I was still in grade school, I had wondered why the children around me seemed so dim and dull. Most of them lacked curiosity utterly. By the time I reached high school, however, I'd chalked the situation up to the universe's whimsy. It gave some of us an unquenchable desire to understand; it gave others a burning need to throw more orange balls through netted hoops than other people did. Still others loved burrowing into warm sand and watching sunsets while sipping ethanol-infused beverages.
To each his own.
It was all good, so I shrugged and did my own thing.
As my own things contrasted ever more wildly with the things of my fellow human beings, however, I began to lament the silliness of my lot in life. And, after taking several online quizzes designed to reveal personality quirks, I did begin to wonder if I might, in fact, have a wee touch of autism.
Nothing huge, of course. Nothing actually diagnosable or disabling! Not at all... but maybe just a little trace of Aspergers. I did ask the counselor I was seeing--for suicidal depression--after several online quizzes suggested I could have Aspergers. At the time I'd been contemplating going to graduate school to become an occupational therapist. If I truly had Aspergers, I reasoned, it would be foolish for me to pursue OT. Everything I'd heard and read about autism disorders described them as characterized first and foremost by a lack of empathy. Such a character flaw would preclude being a reasonable occupational therapist, thus if I did indeed suffer even a bit from this disorder, it would behoove me to rethink my future.
The counselor told me she couldn't diagnose me as she lacked the expertise, but she did say she found nothing wrong with me that would make me a poor OT. She didn't seem to think I had autism.
My mother--with her MSW degree and years of social work--also told me I didn't have autism. She had, she stated, met people with autism and they were not at all like me. I was reassured. I pressed forward into OT grad school.
Hahahaha... Yes, that was two and quarter years of torture and giggles. It turned out that the OT professors at this particular school--and this could be true of many OT schools--had a serious preoccupation with autism. From the first quarter on, they referred to it in many examples of clinical treatments, assigned us to do special reports about it, and even made it one of the six research areas the school focused on for its two-year graduate projects. Of course the universe gave a chuckle and dropped me into the autism research group. Apparently, it wasn't enough that I'd already begun to suspect the truth about myself, I was going to have to scrutinize it microscopically for TWO YEARS.
Heh heh.
No, really, if you have autism, you'll understand the hilarity of being assigned to study something that was already becoming one of your main areas of 'special interest'. For the majority of people with an autism spectrum disorder (ASD), one of the main symptoms of the condition is a tendency toward a consuming preoccupation with a topic or hobby. It can be Star Wars, Muppets, dinosaurs, trains, jellyfish, sharks, coconut palms, or Harry Potter. It doesn't really matter what it is, what matters is that the thing rises up and forcefully inhabits nearly every waking thought. This is why we Aspie folk can be such tiresome bores to the non-Aspies among us.
For us, everything in the universe genuinely does relate in some way to our present obsession because, alas, our brains have ruminated upon the topic so long that they actually have found the 29 degrees of separation between laundry detergent and, for instance, the different woods used in the wands in the Potterverse. I agree this is tiresome. And I apologize for the times I have inadvertently wrenched the focus of a conversation onto Draco Malfoy, The X-Files, Star Trek, economic theory, The Beatles, nutrition, and Smallville. I was wrong to do this.
In my defense, in my silly brain, your topic and mine really were connected. I also couldn't really understand why you wanted to talk about laundry detergent (or whatever), but I was giving the conversation my best effort. Sigh...
I know I'm the pits at neurotypical (not autistic) chit-chat. I have learned to fake it through years of tortured effort, but it will never slip naturally and happily off my tongue. It requires me to look out at the universe and human existence as if it were, well, as deep as a dinner plate and about as complex. Rather than acknowledging the myriad fascinating areas of mystery and study and philosophy that exist and beg to be engaged, a neurotypical conversation pretends that there truly is nothing of great value to be shared verbally. It has a great deal in common with the watermelon-watermelon patter that forms the background conversation in movies and television. It just mystifies and frustrates me.
And please forgive me. I tangented wildly off topic. What I meant to get to is this:
People with autism typically have at least one major obsession at any given moment. And they will cling and study and eat and breathe and sleep and *live* that obsession. If the person with ASD has a relatively decent IQ and enough resources and time to devote to the topic, he or she may in fact end up with an understanding of that subject that could match that of people who have studied it at grad school level. It's the nature of the ASD brain.
So, yeah. The more I began to suspect I, myself had autism, the more ASD became my primary fascination. So when the professor who was leading our research project issued this directive: "learn everything about autism--become an expert on it" I threw my silly self into life-swallowing research in a way that I had never done before. In my silly mind, her instructions implied I needed to do *more* than I otherwise would have. More than life-consuming obsession is, well, a whole heckuva lot. It was great luck that I'd taken a vow in 2008 never to engage deeply in fiction again. The final Potter books had been disappointing enough that I didn't want to risk similar pain with other series. Further, I'd begun to view my fiction obsessions as unhealthy escapes from real life. I was too gifted in science and math to spend my days ruminating on the philosophical ramifications of the unforgivable curses. I needed to apply my brain to something productive. I chose health science.
Happily, physiology delighted and fascinated me. Clumsy though I was in lab, I got good marks on tests and seemed to grasp complex facts readily enough. I began to study the health effects of nutrition as a hobby. Since this branched out into neurology, endocrinology, and general health, my interest prepared me well to delve into some of the more intricate aspects of ASD.
And I so, so, soooo did. Really. I just look back at it now and laugh. I think if my professor had realized that, with her casual words, she'd unleashed the full force of an autism spectrum special interest tsunami, she would probably have chosen different words. I conclude this because, when we returned to classes after our break, she seemed puzzled by my desire to include such aspects of ASD as biological differences and risk factors within our literature review. As was perfectly appropriate, she was more focused on ASD as it related to OT interventions. These interested me very little because the literature suggested that OT interventions needed a great deal of fine tuning in order to be of strong benefit to people with ASD. Indeed, the literature even suggested that some interventions might be useless or even harmful. Some, however, such as letter-writing support, seemed potentially helpful and, at worst, harmless. This ended up being the area of our study.
But my brain was already busy on its track trying--and utterly failing--to figure out what autism was at a neurological level, what was causing it--if anything beyond simple genes--and why it appeared to be increasing in our population. Mind you, I didn't find this increase to be necessarily alarming. I was rather fond of my silly brain. And--especially as I began to grasp the truth, that my autism allowed me to appreciate Star Wars and Star Trek and Potter and Sandman on a level that neurotypical people would never experience; and that this same quirk allowed me to grasp the biology of muscle cells and memorize the ridges and tunnels of a human skull 3x as fast as my classmates--well, I couldn't exactly lament my fate.
I kind of love my Aspie brain.
Except that, my Aspie brain often despises me. My heavens, does it loathe me. And it is unfiltered in its criticisms. It's funny, I suppose, because I really did wonder for months when I realized I had autism, whether I lacked empathy.
I agonized over the possibility that my concern for others was just something I'd feigned to myself and to others in order to attain a morality that, intellectually, I believed to be correct. I was suspicious that I might, at some core level, really *not* care about my fellow creatures. This was, of course, sheer nonsense. I was the girl who had embarrassed herself by being one of the very few who cried during E.T. at a viewing classmates attended. I worried about the feelings of newcomers to our small town school. I didn't understand why some of the students were so crushingly cruel to others. I wanted to protect and console--and tried to do so when I could. Frankly, I not only had empathy, I just plain gushed with it. One of my classmates expressed the truth of it rather perfectly: I felt worse for her troubles than she, herself did. It was true. I could read it in her voice and face.
(Do you want to know a secret, neurotypical folk? It isn't a clinical, scientific measurement, but it is a conclusion I've made based on my own observations of the Aspies I've met and of the facts their parents relay about them. People with autism care *more* about the feelings and well-being of their fellow living creatures than neurotypical people do. This is a generalization. There are autistic people who lack empathy. As far as I can tell, however, the percentage of neurotypical people who lack empathy dwarfs the percentage of people with ASD who have this problem. Now people with ASD won't always correctly read facial expressions or be able to see automatically that someone else is suffering. But if they *do* become aware that another creature is suffering, they will almost always feel very sad about it and even try to do something about it. Some neurotypicals care this deeply, but not a whole lot of them do. Kind of ironic. Or, frankly, kind of outrageously unfair. I am SO DESPERATELY TEMPTED TO WRITE A BLOG ABOUT THE PRIMARY CHARACTERISTIC OF NEUROTYPICAL PEOPLE BEING AN EMOTIONALLY-STUNTING LACK OF EMPATHY... But I will calm myself, drink some tea, remind myself there are wonderfully sensitive neurotypical people in this universe, and get back to business here.)
My heart breaks for others' problems. And, for the most part, I view them as deeply lovable and trudging through lives of great challenge and limited resource. I know they can triumph, but I can certainly understand when they feel overwhelmed.
Yes, I do, in fact, have a bleeding heart. Except when it comes to myself. When I make a mistake?
Oh the fury, the unrelenting, shame-suffused fury that I direct at myself is the pure reciprocal of the understanding and support I give others when they falter. I just hate on myself without end. Or, I should say, my brain heaps hate upon me. I don't know why, but I do know that it's been this way for pretty much as long as I can remember. Further, it does appear to be more common among people with ASD. When we err, we're as likely as not to actually hit or punch ourselves. Neurotypical people wisely do not tend to do this. (Good for you, neurotypicals! Keep it up.) I cannot explain why it's perfectly forgivable and okay when others make mistakes, yet somehow unforgivable and proof that I should either die or suffer extensively when I, myself, make a mistake. Of course I recognize that this situation lacks logic. Emotions often do. I find myself at a loss to change them.
Empathy. For everyone--animals in every kingdom, including my own--I feel it. I just don't feel it for me. Bummer.
But in the summer of My Autism Project? This didn't really come into play. I was reading. I was going to libraries. I was doing online science journal searches until 3:00 AM. I was letting my health--that thing I'd fought hard to gain in the last several years--slide back into a pit so that I could do my typical Aspie up-all-night studying of THE OBSESSION until my eyes refused to stay open a second longer.
Yes, I was becoming ever-more an expert upon this topic. The problem was: I was getting absolutely no closer to understanding what autism was and why in the world it seemed to be happening more often. I'd read so many theories--none of which seemed to hold once I investigated further. And as for the what--the very *what* of myself--well, the science journals and texts had descriptions of characteristics and a few brain markers, but they still couldn't say what it was beyond a collection of various traits that would manifest to different degrees in different individuals.
Oh, it was frustratingly unclear, but did that stop me?
If you think that it did, you probably don't have ASD. For people with ASD, a mystery that involves THE OBSESSION is one that simply must be solved even if it takes 3000 sleepless nights, 1000 liters of Dr. Pepper, and enough Fritos to shave 29 years off your life span.
I'm deeply grateful that my particular flavor of ASD grants me the weird ability to perceive patterns and connections--odd trails of complicated causation--when other people see a mess of muck. I'm not entirely certain why my brain does this. I do know, however, that it's done it for a rather long while. Very early in my study of computer science, the compiler our class was using stopped processing our end-of-semester projects. I recognized--by some silly intuitive leap--exactly what portion of the code the compiler was balking at and I figured a workaround and shared it with the T.A. so he could let everyone know. He seemed very impressed. This puzzled me. I figured anyone could have figured it out if they'd thought about it a bit. Over the years several things have subsequently occurred to me about this situation: 1) I was in a group of people that almost certainly included an unusually large number of fellow Aspies, 2) our end-of-semester project should have been as compellingly important to everyone else as it was to me, and 3) my T.A. who had tons of experience in this area did not, himself, figure out why the compiler was failing.
Conclusion: even for an Aspie, I probably have above-average ability to find unexpected causes and patterns. My casual explanation for this is that I have been reading everything I can get my hands on since I could decipher sentences--even my brother's Ranger Rick magazine if it was the only reading material at hand. This combined synergistically with my compulsive need to understand how things work to grant my brain a tendency to work out the "how" and "why" mysteries of unusual situations when others just give up and accept that it cannot be understood. I suspect most people are content that things *do* work and don't feel a need to fathom why. That's probably an easier way to go about life, at least until a glitch occurs and someone's got to fix it.
Does my need to understand make me happy? Oh, boy howdy does it ever *not*. Nope. The only worlds in which endless inquisitiveness yields rewards are the ones devised by clever authors. The real world where humans run amok? I think the only question I can devise at this point that has a happy answer is this one: do I love people? Yes, deeply. I do.
And that just brings on a full galley of woe.
Cause and effect. Patterns. Understanding. My brain will go at it night and day--even without my willing it. I'll be taking a shower or simmering soup or hanging up my laundry when my brain will suddenly pipe up with two dozen urgent questions about THE OBSESSION that must be researched and answered THIS VERY SECOND.
If you knew how many perfectly innocent eggs I have scorched because hunger and breakfast were wholly forgotten in the urgency of understanding some tiny little aspect of THE OBSESSION, you would roll your eyes at me. And I'd deserve it.
The thing is, however, my brain is a more stubborn creature than the rest of me. My heart and childish whims would probably leave me content to read Harry Potter and argue the merits of Star Trek versus Star Wars. My brain? It is a ravenous beast whose maw ever seeks greater and greater gulps of understanding. The only time it feels satisfaction is when it has consumed enough and digested enough to make a sudden, wild connection of understanding. Then, friends, my brain is simply *giddy* with triumph.
This has been universally true until this obsession. This time, those wild connections that brought sudden clarity out of a haze of useless fog? They made my heart fall, my breath catch in my throat. They made me nauseous. They made me cry.
See, for the vast majority of the time I was obsessing and studying autism, I optimistically assumed that the end truth would be something lovely like a genetic hold-over from the Neanderthals or an increasingly expressed recessive gene that granted extra focus to people who possessed two copies. I romanticized Einstein's brain and liked to imagine that I had a few traces of his humanitarian qualities. I was proud to be a part of a group that so overwhelming embraced Star Trek and science. I've never been a conformist or someone who wished to belong to a collective, but it still felt nice to know I had this connection to other people out there who shared so much of my life experience.
And then, there it was upon me.
I was not ready.
When I saw it, when the clarity emerged from the fog, I very nearly collapsed.
I kind of like my brain, you know. It's a bittersweet regard, but it's there. That's probably a bit evident here. Despite the hard time that I give the silly thing, I am immeasurably fond of it. I wouldn't trade it for any other--yes, even Einstein's or Tesla's. My brain may not love me, but I do love it.
And here's the thing, folks: autism is brain damage
The brain that is me, the brain that I love, the brain that did me proud during calculus and chemistry and physics and Shakespeare: that brain is harshly damaged goods. And the things I love about it? They are artifacts of the damage.
If you knew how much energy and time I'd devoted to avoiding anything and everything that could negatively affect my brain--including cold medicines and artificial sweeteners--you might begin to imagine how I took this news. In case you can't imagine: not very darned well.
My brain was compromised, even mangled. And, as high as I score on the autism scale, the level of broken-ness isn't small. Honestly, I almost vomited. I wanted--absurdly enough--to *get away from* my brain for a few minutes, to physically make a distance between myself and this broken thing. And it was weird for me to realize that I couldn't. I was stuck, broken. I couldn't get it out of me and fix it. I *was* it.
Yes, brain damage. For people with the more severe forms of autism--or for their family members--this is probably no surprise. For those of us Aspies who are accustomed to getting the highest marks in every class and using our brains to whirl around impressive thoughts like Michael Jordan maneuvers a basketball? Not an easy thought. The Neanderthal and focus-gene theories had a lot more appeal.
That is what autism is at its simplest: it is brain damage that occurs during the earliest part of human development. That is why the saying "if you've met one person with autism, you've met one person with autism" exists. Brain tissue damage will affect development differently in each individual based on the sites most attacked and based on that individual's capacity to grow replacement tissue appropriately.
But that's it, the nut unearthed from the shell: autism spectrum disorders are different manifestations of brain damage that occurs (for reasons I'm not going to explore here) during gestation or during the first few years of life when the brain is still rapidly growing and developing. Based on the timing, duration, and severity of the attack and the individual child's capacity to repair it properly, the vast spectrum of autism unfolds.
And I know there's been a lot of arguing about whether diagnostic criteria and awareness of ASD have artificially increased the count of people with ASD in the human population. Oh, that it were so, my fine friends. I so wish it were.
Hahahaha... so here I am, no longer just me. I've lost the capacity to be just that weird girl who meowed and pledged allegiance to England during her long phase of Beatlemania. I'm now bound to a label in a way that makes me chafe. I am Autistic Me. Darnit, apparently in the eyes of people who like categories and labels, I'm *autistic* more than I am *me*. Quite a bummer.
But I'm in the process of trying to love my brain with as much glee as I did when I was little. I'm beginning to appreciate its quirks and even to forgive its harsh rages against me. It's nice to know, I suppose. Well, really, it isn't. But I cannot un-see what became crystal clear.
Like it or not, ready or not, well into adulthood, I became "autistic". It's in my medical record and even appears in a chart in the graduate school I attended. It's more official than my love for Draco Malfoy, Loki, and Picard. It overshadows my GPA, GRE, and even my INFP. In the eyes of the world, I'm not a writer and a sister and a chocophilic pacifist. I am ASD.
That's okay. Really, I get it. And I do it to myself as much as anyone else does it. In retrospect, I have to consider it an act of outright sexist stupidity that my teachers and counselors in my youngest years did not--despite expressing alarm at my social problems and odd behavior--recognize my autism. I was a Star-Wars-babbling, easily-tripped, myopic, little-professing cliché of ASD. The only thing I lacked--that thing that *everyone* associates with autism--was a penis. This lack of a simple reproductive organ blinded everyone to the otherwise glaringly obvious truth. It kind of makes me laugh when I think about it now.
Sigh... autism. My brain. You are me. I am you. I am autistically me. I don't regret it, but I still sometimes wish I didn't know. It was so much easier just being me.
To each his own.
It was all good, so I shrugged and did my own thing.
As my own things contrasted ever more wildly with the things of my fellow human beings, however, I began to lament the silliness of my lot in life. And, after taking several online quizzes designed to reveal personality quirks, I did begin to wonder if I might, in fact, have a wee touch of autism.
Nothing huge, of course. Nothing actually diagnosable or disabling! Not at all... but maybe just a little trace of Aspergers. I did ask the counselor I was seeing--for suicidal depression--after several online quizzes suggested I could have Aspergers. At the time I'd been contemplating going to graduate school to become an occupational therapist. If I truly had Aspergers, I reasoned, it would be foolish for me to pursue OT. Everything I'd heard and read about autism disorders described them as characterized first and foremost by a lack of empathy. Such a character flaw would preclude being a reasonable occupational therapist, thus if I did indeed suffer even a bit from this disorder, it would behoove me to rethink my future.
The counselor told me she couldn't diagnose me as she lacked the expertise, but she did say she found nothing wrong with me that would make me a poor OT. She didn't seem to think I had autism.
My mother--with her MSW degree and years of social work--also told me I didn't have autism. She had, she stated, met people with autism and they were not at all like me. I was reassured. I pressed forward into OT grad school.
Hahahaha... Yes, that was two and quarter years of torture and giggles. It turned out that the OT professors at this particular school--and this could be true of many OT schools--had a serious preoccupation with autism. From the first quarter on, they referred to it in many examples of clinical treatments, assigned us to do special reports about it, and even made it one of the six research areas the school focused on for its two-year graduate projects. Of course the universe gave a chuckle and dropped me into the autism research group. Apparently, it wasn't enough that I'd already begun to suspect the truth about myself, I was going to have to scrutinize it microscopically for TWO YEARS.
Heh heh.
No, really, if you have autism, you'll understand the hilarity of being assigned to study something that was already becoming one of your main areas of 'special interest'. For the majority of people with an autism spectrum disorder (ASD), one of the main symptoms of the condition is a tendency toward a consuming preoccupation with a topic or hobby. It can be Star Wars, Muppets, dinosaurs, trains, jellyfish, sharks, coconut palms, or Harry Potter. It doesn't really matter what it is, what matters is that the thing rises up and forcefully inhabits nearly every waking thought. This is why we Aspie folk can be such tiresome bores to the non-Aspies among us.
For us, everything in the universe genuinely does relate in some way to our present obsession because, alas, our brains have ruminated upon the topic so long that they actually have found the 29 degrees of separation between laundry detergent and, for instance, the different woods used in the wands in the Potterverse. I agree this is tiresome. And I apologize for the times I have inadvertently wrenched the focus of a conversation onto Draco Malfoy, The X-Files, Star Trek, economic theory, The Beatles, nutrition, and Smallville. I was wrong to do this.
In my defense, in my silly brain, your topic and mine really were connected. I also couldn't really understand why you wanted to talk about laundry detergent (or whatever), but I was giving the conversation my best effort. Sigh...
I know I'm the pits at neurotypical (not autistic) chit-chat. I have learned to fake it through years of tortured effort, but it will never slip naturally and happily off my tongue. It requires me to look out at the universe and human existence as if it were, well, as deep as a dinner plate and about as complex. Rather than acknowledging the myriad fascinating areas of mystery and study and philosophy that exist and beg to be engaged, a neurotypical conversation pretends that there truly is nothing of great value to be shared verbally. It has a great deal in common with the watermelon-watermelon patter that forms the background conversation in movies and television. It just mystifies and frustrates me.
And please forgive me. I tangented wildly off topic. What I meant to get to is this:
People with autism typically have at least one major obsession at any given moment. And they will cling and study and eat and breathe and sleep and *live* that obsession. If the person with ASD has a relatively decent IQ and enough resources and time to devote to the topic, he or she may in fact end up with an understanding of that subject that could match that of people who have studied it at grad school level. It's the nature of the ASD brain.
So, yeah. The more I began to suspect I, myself had autism, the more ASD became my primary fascination. So when the professor who was leading our research project issued this directive: "learn everything about autism--become an expert on it" I threw my silly self into life-swallowing research in a way that I had never done before. In my silly mind, her instructions implied I needed to do *more* than I otherwise would have. More than life-consuming obsession is, well, a whole heckuva lot. It was great luck that I'd taken a vow in 2008 never to engage deeply in fiction again. The final Potter books had been disappointing enough that I didn't want to risk similar pain with other series. Further, I'd begun to view my fiction obsessions as unhealthy escapes from real life. I was too gifted in science and math to spend my days ruminating on the philosophical ramifications of the unforgivable curses. I needed to apply my brain to something productive. I chose health science.
Happily, physiology delighted and fascinated me. Clumsy though I was in lab, I got good marks on tests and seemed to grasp complex facts readily enough. I began to study the health effects of nutrition as a hobby. Since this branched out into neurology, endocrinology, and general health, my interest prepared me well to delve into some of the more intricate aspects of ASD.
And I so, so, soooo did. Really. I just look back at it now and laugh. I think if my professor had realized that, with her casual words, she'd unleashed the full force of an autism spectrum special interest tsunami, she would probably have chosen different words. I conclude this because, when we returned to classes after our break, she seemed puzzled by my desire to include such aspects of ASD as biological differences and risk factors within our literature review. As was perfectly appropriate, she was more focused on ASD as it related to OT interventions. These interested me very little because the literature suggested that OT interventions needed a great deal of fine tuning in order to be of strong benefit to people with ASD. Indeed, the literature even suggested that some interventions might be useless or even harmful. Some, however, such as letter-writing support, seemed potentially helpful and, at worst, harmless. This ended up being the area of our study.
But my brain was already busy on its track trying--and utterly failing--to figure out what autism was at a neurological level, what was causing it--if anything beyond simple genes--and why it appeared to be increasing in our population. Mind you, I didn't find this increase to be necessarily alarming. I was rather fond of my silly brain. And--especially as I began to grasp the truth, that my autism allowed me to appreciate Star Wars and Star Trek and Potter and Sandman on a level that neurotypical people would never experience; and that this same quirk allowed me to grasp the biology of muscle cells and memorize the ridges and tunnels of a human skull 3x as fast as my classmates--well, I couldn't exactly lament my fate.
I kind of love my Aspie brain.
Except that, my Aspie brain often despises me. My heavens, does it loathe me. And it is unfiltered in its criticisms. It's funny, I suppose, because I really did wonder for months when I realized I had autism, whether I lacked empathy.
I agonized over the possibility that my concern for others was just something I'd feigned to myself and to others in order to attain a morality that, intellectually, I believed to be correct. I was suspicious that I might, at some core level, really *not* care about my fellow creatures. This was, of course, sheer nonsense. I was the girl who had embarrassed herself by being one of the very few who cried during E.T. at a viewing classmates attended. I worried about the feelings of newcomers to our small town school. I didn't understand why some of the students were so crushingly cruel to others. I wanted to protect and console--and tried to do so when I could. Frankly, I not only had empathy, I just plain gushed with it. One of my classmates expressed the truth of it rather perfectly: I felt worse for her troubles than she, herself did. It was true. I could read it in her voice and face.
(Do you want to know a secret, neurotypical folk? It isn't a clinical, scientific measurement, but it is a conclusion I've made based on my own observations of the Aspies I've met and of the facts their parents relay about them. People with autism care *more* about the feelings and well-being of their fellow living creatures than neurotypical people do. This is a generalization. There are autistic people who lack empathy. As far as I can tell, however, the percentage of neurotypical people who lack empathy dwarfs the percentage of people with ASD who have this problem. Now people with ASD won't always correctly read facial expressions or be able to see automatically that someone else is suffering. But if they *do* become aware that another creature is suffering, they will almost always feel very sad about it and even try to do something about it. Some neurotypicals care this deeply, but not a whole lot of them do. Kind of ironic. Or, frankly, kind of outrageously unfair. I am SO DESPERATELY TEMPTED TO WRITE A BLOG ABOUT THE PRIMARY CHARACTERISTIC OF NEUROTYPICAL PEOPLE BEING AN EMOTIONALLY-STUNTING LACK OF EMPATHY... But I will calm myself, drink some tea, remind myself there are wonderfully sensitive neurotypical people in this universe, and get back to business here.)
My heart breaks for others' problems. And, for the most part, I view them as deeply lovable and trudging through lives of great challenge and limited resource. I know they can triumph, but I can certainly understand when they feel overwhelmed.
Yes, I do, in fact, have a bleeding heart. Except when it comes to myself. When I make a mistake?
Oh the fury, the unrelenting, shame-suffused fury that I direct at myself is the pure reciprocal of the understanding and support I give others when they falter. I just hate on myself without end. Or, I should say, my brain heaps hate upon me. I don't know why, but I do know that it's been this way for pretty much as long as I can remember. Further, it does appear to be more common among people with ASD. When we err, we're as likely as not to actually hit or punch ourselves. Neurotypical people wisely do not tend to do this. (Good for you, neurotypicals! Keep it up.) I cannot explain why it's perfectly forgivable and okay when others make mistakes, yet somehow unforgivable and proof that I should either die or suffer extensively when I, myself, make a mistake. Of course I recognize that this situation lacks logic. Emotions often do. I find myself at a loss to change them.
Empathy. For everyone--animals in every kingdom, including my own--I feel it. I just don't feel it for me. Bummer.
But in the summer of My Autism Project? This didn't really come into play. I was reading. I was going to libraries. I was doing online science journal searches until 3:00 AM. I was letting my health--that thing I'd fought hard to gain in the last several years--slide back into a pit so that I could do my typical Aspie up-all-night studying of THE OBSESSION until my eyes refused to stay open a second longer.
Yes, I was becoming ever-more an expert upon this topic. The problem was: I was getting absolutely no closer to understanding what autism was and why in the world it seemed to be happening more often. I'd read so many theories--none of which seemed to hold once I investigated further. And as for the what--the very *what* of myself--well, the science journals and texts had descriptions of characteristics and a few brain markers, but they still couldn't say what it was beyond a collection of various traits that would manifest to different degrees in different individuals.
Oh, it was frustratingly unclear, but did that stop me?
If you think that it did, you probably don't have ASD. For people with ASD, a mystery that involves THE OBSESSION is one that simply must be solved even if it takes 3000 sleepless nights, 1000 liters of Dr. Pepper, and enough Fritos to shave 29 years off your life span.
I'm deeply grateful that my particular flavor of ASD grants me the weird ability to perceive patterns and connections--odd trails of complicated causation--when other people see a mess of muck. I'm not entirely certain why my brain does this. I do know, however, that it's done it for a rather long while. Very early in my study of computer science, the compiler our class was using stopped processing our end-of-semester projects. I recognized--by some silly intuitive leap--exactly what portion of the code the compiler was balking at and I figured a workaround and shared it with the T.A. so he could let everyone know. He seemed very impressed. This puzzled me. I figured anyone could have figured it out if they'd thought about it a bit. Over the years several things have subsequently occurred to me about this situation: 1) I was in a group of people that almost certainly included an unusually large number of fellow Aspies, 2) our end-of-semester project should have been as compellingly important to everyone else as it was to me, and 3) my T.A. who had tons of experience in this area did not, himself, figure out why the compiler was failing.
Conclusion: even for an Aspie, I probably have above-average ability to find unexpected causes and patterns. My casual explanation for this is that I have been reading everything I can get my hands on since I could decipher sentences--even my brother's Ranger Rick magazine if it was the only reading material at hand. This combined synergistically with my compulsive need to understand how things work to grant my brain a tendency to work out the "how" and "why" mysteries of unusual situations when others just give up and accept that it cannot be understood. I suspect most people are content that things *do* work and don't feel a need to fathom why. That's probably an easier way to go about life, at least until a glitch occurs and someone's got to fix it.
Does my need to understand make me happy? Oh, boy howdy does it ever *not*. Nope. The only worlds in which endless inquisitiveness yields rewards are the ones devised by clever authors. The real world where humans run amok? I think the only question I can devise at this point that has a happy answer is this one: do I love people? Yes, deeply. I do.
And that just brings on a full galley of woe.
Cause and effect. Patterns. Understanding. My brain will go at it night and day--even without my willing it. I'll be taking a shower or simmering soup or hanging up my laundry when my brain will suddenly pipe up with two dozen urgent questions about THE OBSESSION that must be researched and answered THIS VERY SECOND.
If you knew how many perfectly innocent eggs I have scorched because hunger and breakfast were wholly forgotten in the urgency of understanding some tiny little aspect of THE OBSESSION, you would roll your eyes at me. And I'd deserve it.
The thing is, however, my brain is a more stubborn creature than the rest of me. My heart and childish whims would probably leave me content to read Harry Potter and argue the merits of Star Trek versus Star Wars. My brain? It is a ravenous beast whose maw ever seeks greater and greater gulps of understanding. The only time it feels satisfaction is when it has consumed enough and digested enough to make a sudden, wild connection of understanding. Then, friends, my brain is simply *giddy* with triumph.
This has been universally true until this obsession. This time, those wild connections that brought sudden clarity out of a haze of useless fog? They made my heart fall, my breath catch in my throat. They made me nauseous. They made me cry.
See, for the vast majority of the time I was obsessing and studying autism, I optimistically assumed that the end truth would be something lovely like a genetic hold-over from the Neanderthals or an increasingly expressed recessive gene that granted extra focus to people who possessed two copies. I romanticized Einstein's brain and liked to imagine that I had a few traces of his humanitarian qualities. I was proud to be a part of a group that so overwhelming embraced Star Trek and science. I've never been a conformist or someone who wished to belong to a collective, but it still felt nice to know I had this connection to other people out there who shared so much of my life experience.
And then, there it was upon me.
I was not ready.
When I saw it, when the clarity emerged from the fog, I very nearly collapsed.
I kind of like my brain, you know. It's a bittersweet regard, but it's there. That's probably a bit evident here. Despite the hard time that I give the silly thing, I am immeasurably fond of it. I wouldn't trade it for any other--yes, even Einstein's or Tesla's. My brain may not love me, but I do love it.
And here's the thing, folks: autism is brain damage
The brain that is me, the brain that I love, the brain that did me proud during calculus and chemistry and physics and Shakespeare: that brain is harshly damaged goods. And the things I love about it? They are artifacts of the damage.
If you knew how much energy and time I'd devoted to avoiding anything and everything that could negatively affect my brain--including cold medicines and artificial sweeteners--you might begin to imagine how I took this news. In case you can't imagine: not very darned well.
My brain was compromised, even mangled. And, as high as I score on the autism scale, the level of broken-ness isn't small. Honestly, I almost vomited. I wanted--absurdly enough--to *get away from* my brain for a few minutes, to physically make a distance between myself and this broken thing. And it was weird for me to realize that I couldn't. I was stuck, broken. I couldn't get it out of me and fix it. I *was* it.
Yes, brain damage. For people with the more severe forms of autism--or for their family members--this is probably no surprise. For those of us Aspies who are accustomed to getting the highest marks in every class and using our brains to whirl around impressive thoughts like Michael Jordan maneuvers a basketball? Not an easy thought. The Neanderthal and focus-gene theories had a lot more appeal.
That is what autism is at its simplest: it is brain damage that occurs during the earliest part of human development. That is why the saying "if you've met one person with autism, you've met one person with autism" exists. Brain tissue damage will affect development differently in each individual based on the sites most attacked and based on that individual's capacity to grow replacement tissue appropriately.
But that's it, the nut unearthed from the shell: autism spectrum disorders are different manifestations of brain damage that occurs (for reasons I'm not going to explore here) during gestation or during the first few years of life when the brain is still rapidly growing and developing. Based on the timing, duration, and severity of the attack and the individual child's capacity to repair it properly, the vast spectrum of autism unfolds.
And I know there's been a lot of arguing about whether diagnostic criteria and awareness of ASD have artificially increased the count of people with ASD in the human population. Oh, that it were so, my fine friends. I so wish it were.
Hahahaha... so here I am, no longer just me. I've lost the capacity to be just that weird girl who meowed and pledged allegiance to England during her long phase of Beatlemania. I'm now bound to a label in a way that makes me chafe. I am Autistic Me. Darnit, apparently in the eyes of people who like categories and labels, I'm *autistic* more than I am *me*. Quite a bummer.
But I'm in the process of trying to love my brain with as much glee as I did when I was little. I'm beginning to appreciate its quirks and even to forgive its harsh rages against me. It's nice to know, I suppose. Well, really, it isn't. But I cannot un-see what became crystal clear.
Like it or not, ready or not, well into adulthood, I became "autistic". It's in my medical record and even appears in a chart in the graduate school I attended. It's more official than my love for Draco Malfoy, Loki, and Picard. It overshadows my GPA, GRE, and even my INFP. In the eyes of the world, I'm not a writer and a sister and a chocophilic pacifist. I am ASD.
That's okay. Really, I get it. And I do it to myself as much as anyone else does it. In retrospect, I have to consider it an act of outright sexist stupidity that my teachers and counselors in my youngest years did not--despite expressing alarm at my social problems and odd behavior--recognize my autism. I was a Star-Wars-babbling, easily-tripped, myopic, little-professing cliché of ASD. The only thing I lacked--that thing that *everyone* associates with autism--was a penis. This lack of a simple reproductive organ blinded everyone to the otherwise glaringly obvious truth. It kind of makes me laugh when I think about it now.
Sigh... autism. My brain. You are me. I am you. I am autistically me. I don't regret it, but I still sometimes wish I didn't know. It was so much easier just being me.
Subscribe to:
Comments (Atom)