 |
| Thanks for visiting a KindTree Productions, Inc Page
|
Escape from self-injury, March 2011Last May, I finally broke my habit of self-injuring, a feat born of decades of introspection and many failed attempts to abort these episodes. In futile attempts to scale it down and eventually triumph over it, I went through many phases of self-injury.
Over time, self-injuring had replaced violent behavior. During kindergarten, I attempted to kill a little boy in my class. He had peed in his chair and I sat down on it accidentally. My memory is that I pinned him on the ground and went after him with a lead pencil. (I had been told that lead is poisonous.) Twenty years later, I saw my kindergarten teacher and she didn’t remember it, so it may not have been so dramatic. Still, even in kindergarten, I felt horrible remorse for attempted murder. I had a strong moral conscience, even as a little kid. My last murder attempt was in 3rd grade. I threw a dart at my brother during a fight. Fortunately, I missed him, though my memory has it that I missed by only a few inches. Again, I felt horrible remorse. I vowed never again to try to kill someone. I came up with a less violent and more sensually gratifying way to handle my frustration--banging my head. The physical pain distracted me from my anguish. I had complete control over the rhythm and force of my fist. It was an efficient way to punish myself for my incompetence, in theory. In actuality, however, my self-punishment did not forestall a spanking or, worse yet, the removal of a treasured privilege. The authority figure in command always managed to squeeze in a spanking, at least. It was a humiliating cycle. In elementary school, I found most academic subjects easy except for arithmetic. Adding made no sense to me, especially the carrying part. My columns were too crooked to add the right digits; furthermore, I simply could not trust the magical thinking behind carrying. It was too much of a leap for my literal brain. I shrieked and banged my head against my desk in frustration trying to follow all those illogical steps. There were 3 report card grades: O (outstanding), S (satisfactory), N (needs improvement). I got O’s in reading, spelling, science, art and music; and N’s in arithmetic, penmanship, neatness, sportsmanship, and following directions. The blank section of my report was filled in with a flawlessly penned but perplexed epistle from my teacher to my parents. Later on, geography, algebra I, lab science, survey history, wheel throwing, accounting, and other difficult classes replaced arithmetic as triggers. I freaked out at work, when I couldn’t figure out how to do something or when things got confusing and chaotic; on walks, when I stepped on dog manure; at home, when my computer seized up or I couldn’t find something. I lashed out at anybody who tried to comfort me. Mental health professionals often think self-injury is an attention-seeking behavior. It rarely is, actually. Mine was an attempt to punish myself for being so incompetent and to redirect myself from the agony of frustration to the respite of mere pain. The drama was embarrassing. People’s attempts to console me were humiliating. I walked a tightrope between the comfort that came from distracting myself with measured and predictable physical pain, and the very real possibility of disfiguring myself permanently. My freakouts transmogrified over time as danger chased the comfort of self-inflicted pain. I figured out that head banging could lead to brain injury so I switched to pressing my eyeballs with my thumbs. Then, having figured out that pressure could damage my eyeballs and jeopardize my vision, I switched to cutting below my left wrist with an Exacto knife. Since I was not attempting suicide—only wishing my life would somehow evaporate into a cloud of oblivion—I stayed away from razors. I switched to stapling the same area of my hand. The pain was soothing without being gory. I then figured out, though, that the skin is a great protector against an increasing multitude of drug-resistant bacteria, so I switched to shrieking as loud as I could. Screaming obliterated my voice and threatening my singing voice, so I switched to holding my breath really hard against the inside of my head. I then figured out that holding one’s breath so strenuously can cause a stroke. I was at a loss for harmless pain. In the meantime, I was starting to discern an infinitesimally short decision point in which I could execute the choice not to self-injure. This window of opportunity was perilously ephemeral, however. I strategized on how to take advantage of it, but my habit was too ingrained to do anything about it. I watched myself helplessly. I started developing memory problems that alarmed me. Valium and Ambien were the main culprits. I gave up Valium, which I had been using to come down from the freakouts. I experienced two weeks of heightened anxiety, but my memory problems subsided. Without this chemical buffer, however, I was left only with my inner resources. A friend of mine had, many years ago, given me a beautifully painted affirmation card, which I put on my bathroom mirror. I promptly forgot about it. I came up with three affirmations of my own: 1) No self-injury. 2) Be optimistic; trust the universe. 3) Don’t dwell on boring people or unavoidable things. The three were only tangentially related to each other. The last two had next to nothing to do with freakouts. But they were a start. I liked the idea of creating my own affirmation card, but writing something neat and pretty enough to look at when I brushed my teeth was too onerous. The project did not interest me artistically. Rather than dwelling on my lack of creative inspiration or, even worse, waiting until inspiration hit, I went ahead and drafted my affirmations on an index card in hasty all-caps and tangled, unwieldy scribbles. I ran out of space on the bottom of the card so I had to write the third affirmation in tiny, spidery handwriting. I pinned my sloppy affirmation card on a bookshelf. At about this time, an ex-friend of mine who had been harassing me for years passed away suddenly, leaving a peaceful void. In my heart, I had wished her well but wanted her out of my life. I had my first non-self-injurious freakout a couple of weeks later. This time, I was able to seize the very palpable and real decision point not to self-injure. Quoting Robert Frost, a favorite poet of mine: "I took the road less traveled by/And that has made all the difference." The "less traveled by" part was beside the point for me in this instance, except that most people don’t self-injure. My freakouts are still a thing of much whining, weeping, self-pitying, and self-loathing. The lack of instant cathartic release prolongs the misery. The reward, though, is that the recovery period of blank despair is shorter, and that I no longer put myself in physical danger. Mary-Minn Sirag
Mary-Minn's Stim Page, October 2010 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) Who am I? “Those of us who were so fortunate as to learn to talk and such were seen as “cured”, our autism somehow expunged. Having been “cured”, I was deeply embarrassed by my persistent difficulties with arithmetic, my social and physical clumsiness, my inability to overcome these challenges, as other kids seemed able to.” I was one of the 10,000 kids diagnosed with
autism in the 1950s. Back then, an autism diagnosis was a life
sentence in an institution. My parents lacked the resources to
raise me and my four siblings, so my grandparents adopted me from
the time I was 3-1/2 to 7 years old. My grandmother created an
early intervention program that presaged ABA and Floor Time, and,
doubtless, other intervention programs.
Mary-Minn's Stim Page, July 2010 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) The substance of my memories and dreams I have only two memories from the time before I learned to talk. My first one is looking down from a small airplane onto a flat green landscape punctuated by trees and houses. There’s an indication of having been air sick but no residual dizziness or feeling in my gut. There is a pleasant memory of the engine’s sound, rich in overtones and melody. I think the part about seeing out of the windshield must be a “memory extension” rather than a factual reality. That memory would have been from when I was flying with my father from Orlando to Cedar Rapids, Iowa. I was 3-1/2. My father and the pilot, even myself, were an invisible backdrop, a “natural flavor”, as it were, homeopathically diluted. There were no other people inhabiting this dream. My father tells me that I was running up and down the aisle, placing my ear on the floor to hear the engine better. It is hard to distinguish his recollection from my memory. “Though my dreams are not exactly pleasant or comforting, neither are my favorite movies or books. I like my consciousness to be shifted to new angles, my moods to new atmospheric flavors and abstract forms. ” My second memory is of my younger brother pooping little pellets on the floor. His trousers are off. I am looking down from the landing of the staircase going up to the bedroom. I must have been 4, when my parents and siblings were visiting me at my grandparents’ farm in Iowa. The memory is emotionally flat except for my incredulity. My early childhood memories are bald and factual.
On the other hand, my dreams from back then were terrifying. They
lingered after I awoke, ambushing me with fiends from the night.
The people inhabiting my memories, however, remained implied rather than explicit, a backdrop to the imagistic and atmospheric, the real substance. The emotions of my more distant memories are detached, observing. I remember a scene with white lace curtains against white sky and snow, dark wallpaper with a busy pattern, dark wood; heavy, ornate furniture; sitting still, almost so still that depth flattens; a smell of well-dusted old wood furniture. Perhaps I was bored of sitting there, but I can only surmise that, after the fact. Another memory is of bleeding hearts against snow and, again, white sky. Again, I may have been ready to go inside because it was so cold, but knowing my awareness of feeling and sensation, I probably wasn’t fully conscious of how my body felt or what my mood happened to be at the time. By far, the most memorable and substantial quality of my dreams and more distant memories are atmospheric--of weather, colors and spatial orientation. (When I was in third grade, I wanted to be a meteorologist.) My dreams contained an implicit map of routes--roads, canals, elevated trains. I remember the floor plan of every house I have lived in, but not so much the furniture, paintings or decorative features. Both my memories and dreams are filmed, as it were, in a specific coloristic style and architectonic structure. The “color specs” include palette and color scheme, reflective quality of the color, brilliance or diffuseness, whether the light is scintillating or flattened. My strong geographical and architectural dream sense stand in sharp contrast to my poor sense of direction in waking life. The space of my dreams can be visualized aerially as well as from the “camera angle” and can be easily mapped onto paper, even after I have awakened. My dreams are perceived from specific visual perspectives—looking down from a staircase landing, walking through a flat camo-brown colored, dank maze. People in the dream, including myself, are implied, taken for granted, devoid of individual personality. Over 30 years ago, the only visually distinct
dream character that has inhabited a dream of mine showed up.
She was wearing cherry-red reflective lipstick, a tight reflective
dress and red stiletto heels. She was leaning up against a shiny
enamel-red convertible. A creature more architectural than human,
she was no one from my waking life. The people inhabiting my dreams are either “We”, “They”, or “I”. Other than a few rare stand-ins for people I know in “real life”, the characters in my dreams are nobody in particular. Even the “I” in my dreams is an impersonal stand-in. Indeed, “I” would be a third-person except for the technical fact that the dream is seen through the camera of “my” eyes. Though “I” am a mere fingerprint of my wakeful self, I am never anybody else. The emotions in my dreams are minimal, residual, generally no deeper than anxiety or frustration--missing boats, getting on the wrong train. When I awaken, the residual feeling from the dream is affect more than emotion. Though my dreams are not exactly pleasant or comforting, I savor them as long as I can manage to stave off the cruel insult of waking consciousness. When I was little, especially, I had days of déja vu, when inchoate dream flashes leaked out from sleep into my wakeful state. At such times, the barrier between sleep and wakefulness was diaphanous. These shimmerings flitted through inter-dimensional worm holes, instantaneously popping open and sealing off the whisper-thin prisms separating dream from thought. This moment of permeability was but a gasp into somewhere that is normally unreachable, even through distant corridors of imagination. Though my dreams are not exactly pleasant or comforting, neither are my favorite movies or books. I like my consciousness to be shifted to new angles, my moods to new atmospheric flavors and abstract forms. I feel deprived when wakefulness shoves away all residue of the night, leaving in its wake a mundane barrenness. I would rather risk a fitful and shallow sleep that skims over the watery surface like a flat pebble than cloak the ambiguity of nocturnal awareness in the torpor of sleeping pills. Mary-Minn Sirag
Mary-Minn's Stim Page, March 2010 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) School Daze When I entered kindergarten in Iowa, I changed my name Mary-Minn to Mary. Mary reflected my new non-autistic identity. The common name allowed me not to stick out, not to be found out. In the ‘50s, autistic was an odious adjective, a euphemism for “schizoid personality” or emotional disturbance beyond mere neurosis--a little bit of this and a little bit of that, all of it shameful. Autism had not coalesced into a formal diagnosis. Even after it became a formal diagnosis, it took over 40 years for the diagnosis to be helpful. What treatments existed were draconian and inhumane. People with physical disabilities were sequestered into “special” programs, hidden from the public. Nobody told me that children with
mental illness and intellectual disabilities were locked up in
institutions but I knew it. The lucky kids who somehow escaped
being institutionalized were placed in isolated “schools”
for the “feeble-minded”, as “they” were
called back then. I probably remembered hearing the psychologists
advise my parents to cut their losses and get on with parenting
my four siblings, even though I was nonverbal and seemingly oblivious
at the time. That was back when people with intellectual challenges
were perceived to have no conscious awareness besides hunger,
fear and other basic discomforts. They had no real personality. “P.E. became torture in eighth grade. I didn’t reach puberty until 9th grade, a year or two after my classmates. I was skinny and flat chested. In the shower room, my classmates ridiculed my skinny and underdeveloped figure, unenhanced by a padded training bra. I tore them to shreds verbally until they ignored me entirely. I don’t know what was worse: being ridiculed or ostracized.” In kindergarten, one of my classmates, who was “not quite right”, peed in his chair. The puddle and the odor made me nauseous. Next thing I knew I was watching myself attacking this kid with a pencil, having heard that lead is poisonous and fully intending to kill him. The last scene of “Looking For Mr. Goodbar” recapitulates my memory of the incident. It was a wake-up call for me. I was horrified by what I had just done. More than that, though, I was terrified that were I ever to attempt to murder someone else, my mental defects would be discovered and I’d be locked up forever. Nobody had to threaten me with that consequence to scare the beejabbers out of me. After that, I learned to sublimate my freakouts into self-injury and disruptive but not violent behavior. I was infatuated with a classmate, Roxanne. I so badly wanted to be blonde and blue-eyed like her. During recess one day, Roxanne pulled down my underpants and pushed me into a thorny bush. My scratched butt hurt less than the humiliation. I don’t remember if that ended our friendship or not. I was matter of fact about such things, chalking them up to my inferiority. The summer before second grade, I moved to Lebanon with my parents and siblings. I was so excited about having someone to play with at home, at last. My siblings were never told why I was “different”, probably because my condition was blamed on cold and withholding “Refrigerator Mothers”, and my mother felt to blame. The fact that I not only talked but also performed academically at grade level was proof that I had been cured. Still I was an annoying embarrassment to my family, what with my rocking, humming, grabbing utensils with a fist and stabbing them into food, my difficulty putting together a coherent outfit and dressing myself. During lunch hour in second-grade, I had my first brush with organized sports. The people on the opposing team became my enemies. I did not understand the concept of friendly competition. Balls made no sense to me. I hated these spherical projectiles that I was supposed to catch and throw but couldn’t. Another game we played was “Boys Against the Girls”. I had no use for boys and the whole cutesy girl and boy thing and wanted to kill the lot of them. I liked fighting but physical contact with anybody besides the person whom I was trying to annihilate made me feel like a deflating balloon skrinkling up when touched. I was in love-hate with one boy. When he kicked the ball, it made a beautiful arc that mesmerized me. The only athletic pursuits I enjoyed were running, jumping from high places, fighting the neighborhood boys with my brothers. I enjoyed fighting. The rules were simple: don’t hit below the belt, don’t hit the head. The idea was to hurt, not injure. At home, I invented a game called “Brown Eyes Versus the Blue Eyes”, modeled after “The Boys Against the Girls”. I pretended that Patty, my blonde and blue-eyed best--and only--friend, had brown eyes and brown hair so that she could be on my side. I don’t know who played on the blue-eyed side, as none of my sibs were blonde or blue-eyed. I played to kill. Fortunately, I wasn’t any good. I was a wretched sport, furious and devastated when I lost, gloating when I won. During the summer before third grade, I learned how to swim. I was terrified of putting my head under water. I had no faith that a flimsy rubber inner tube could somehow protect me from drowning. My father held me up on the surface of the water and gently let go of me. To my surprise, I was floating; I didn’t sink to the bottom of the sea and drown. That summer, I learned to dog paddle; many years later I learned the breast stroke with correct breathing. (I never learned free-style, or what we called “the crawl”. Paddling the legs without being frog-legged and breathing properly contradicted each other like patting your head and simultaneously making a circular motion over your stomach.) I put on plays for myself ritualizing adult social behavior that made no sense and seemed artificial. I put together simple sets. Sometimes I was able to scrounge up an audience. In 4th grade, I was given puppets and a puppet stage for Christmas, so I moved on to puppet shows. On dreaded sunny days during the winter, my sister Noonie, my best friend Patty and I roller-skated. There were no large flat surfaces so we skated on the narrow sidewalk flanking our neighbor’s summer villa. The sidewalk was a foot up from the garden. My balance was precarious and I was scared of falling. I skated timidly, looking down at the sidewalk, my knees locked, both skates on the terra firma at all times. My only way of stopping--and the only thing I enjoyed about skating--was to twirl around, my arms hyper-extended horizontally to the ground, my fingers twinkling fiercely in an effort to further slow myself down. I was able never able to spirit Patty away from roller-skating but indoctrinated her that team sports were a stupid waste of time. We whiled away our lunch hour in the shade, plotting the course of our next weekend together, while our benighted classmates played ball and, if they were girls, jumped rope, both of which were impossible for me. Seventh grade P.E. was a blessed respite from the unseemly combination of balls and teams. We spent the year learning gymnastics. I was skinny and supple, so I could sit on the top of a human pyramid without crushing the people standing below me on the pyramid. I learned how to do headsprings, necksprings and a gracefully slow back walkover, but never mastered cartwheels, handsprings or backsprings. I refused to get on the treacherous balance beam or parallel bars. The teacher, Mrs. Turmelle, spent more time with me than with anybody else. At the time, I thought that I was her favorite student. In retrospect, though, Mrs. Turmelle, like my kindergarten and first grade teacher, probably found working with me an interesting challenge. The following year she became a guidance counselor and abandoned coaching. After that, teams and balls took over P.E. There was a short track season, which was a relief because there were no teammates to disappoint with my bad performance. Though I wasn’t athletic, I took long walks and biked a lot at home, so I possessed stamina, agility and strength. I came in second in the 50-yard dash and was strong on my relay team. The one week we did archery, I did surprisingly well. These lacunae of athletic competence served only to infuriate my teammates. P.E. became torture in eighth grade. I didn’t reach puberty until 9th grade, a year or two after my classmates. I was skinny and flat chested. In the shower room, my classmates ridiculed my skinny and underdeveloped figure, unenhanced by a padded training bra. I tore them to shreds verbally until they ignored me entirely. I don’t know what was worse: being ridiculed or ostracized. In 1969, when I was in the 10th grade, P.E. was becoming another uncool thing to disdain. One day during track, the P.E. teacher required a girl who was sick to run the mile and she passed out. A bunch of us rebelled by running backwards, skipping, walking—everything but running forward. Now, that was my kind of team sports! In the middle of 10th grade, our family moved from Lebanon to a small town in western Maryland. The school was in Brunswick, a scrappy railroad town near the foothills of the Appalachians. When we moved there, my brothers and I were the first students at Brunswick High who had lived outside Maryland, let alone abroad. We were teased for being camel-riding Ay-rabs. My brothers were beaten up. The boys followed me in the halls like the rats of Hamlin, ridiculing my gait, rocking and ticcy speech mannerisms. P.E., beehive hairdos, cat’s eye glasses and “natural” colored wigs were still cool in Brunswick. The team captains chose me after the fat girl with the glandular condition. At least she planted herself in one place and could be played around. I, on the other hand, dashed around the volleyball court, trying to hit the ball but blocking my teammates instead. They placed me in the nether reaches of the field, far removed from where the ball was supposed to go. I spent that time autopsying in my mind what I should have said to Dixie when she tripped me in the shower. The girls on my team threatened to beat me up after class. All the while, our teacher was yelling at us between hollow cheeked inhalations of Camel Filters to run faster, catch the ball this time. I envied the girl who was sidelined with a heart condition. Chronic illness was the mark of a 19th century Russian heroine, brave in her pallor, tragic in her evanescence. How badly I wanted to be mourned! How guilty my tormentors would feel after my untimely death! My intellect and acts of courage, unappreciated during my brief life, would shine on--a shooting star, rich with promise. Are things better now? Mary-Minn Sirag
Mary-Minn's Stim Page, March 2009 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) Blissed out with no place to go When I was three, I was sent to live with my grandparents on their farm in Iowa, as my parents didn’t have the resources to care for a nonverbal and behavioral autistic child, in addition to three other children. My grandmother couldn’t leave me with a babysitter so she took me with her wherever she went—to visit her friends and in-laws, play Royal Rummy, catch up on gossip and Iowa weather talk. I kept myself fully occupied exploring the intimate
bowels of her friends’ purses, where lipstick and perfume
scents mingled with face powder, handkerchiefs and battered half-tubes
of Life Saver Pep-O-Mints. I asked them to lend me their diamond
rings, and become entranced by the coruscations of prismic light.
If I got caught doing any of these things, my grandmother grounded
me, a good incentive to be more restrained in my curiosity and
fondness of scent. I loved going visiting, although my role as
a small child was to sit quietly–and space out into my world
of heightened senses that blended into what were to become my
favorite memories. My earliest memories are not so much of people but rather of white lace curtains against white overcast and snow, ice crystals twinkling from the turquoise-ultramarine infinity of sky, spring pansies brought home from Sunday school juxtaposed against a backdrop of the deepest purple of approaching storm, the happy duet of firefly Morse code and my first bowl of blackberry ice cream on my grandparents’ picnic table at night, and Vanishing Cream–a boudoir baby-pink foray into the invisible! I loved storms, above all, and the Iowa ones were among the best and the brightest. The muggy heat buzzed and the sky vibrated at inaudible frequencies I could only feel. As I got older, my terror of climbing stairs evolved into an equally intense fascination with heights that has never since left me. My two neighbor friends and I would climb the hay escalator into the hay mow in the barn, where we feasted on Tootsie Rolls, marshmallow circus peanuts, Cheetos and cherry Kool Aid, and shared dark secrets as we monitored the approaching storm. The grownups describe the west sky as black, but I knew that it was a brilliant-deep Prussian purple. The leaves before a storm turned inside out, exposing the subtler inner side where the veins protrude. Gusts combed the corn like invisible hands brushing corduroy ever so gently. The lightning pranced and, as the storm approached, cracked open the sky. The thunder purred periwinkle chords of gentle softitude from the distance and sharpened as it approached. We climbed down to terra firma when the ozone quickened the air, followed by giant splashy drops. I jumped up and down as sound, color, light and smell blended into cresting ecstasies outside of time, space and personal safety. When I was 7, I moved to Lebanon to live with
my parents and siblings. We crossed the Atlantic and the Mediterranean
on a small Dutch freighter while being chased by a hurricane.
Furniture was bolted to the floor and the tablecloths were wetted
so as to prevent the food and table settings from flying off into
the air. The waves and wind ripped apart the ladder up to the
bridge of the ship. For about a week, we were forbidden to go
outside. We charged around inside the pitching ship, holding onto
the railing of the stairs, leaping into the air as the waves buffeting
the ship crested and landing nimbly as the ship plunged into the
depths, the movement soft, gentle and yielding. The rocking at
night calmed and soothed me; after we disembarked at the port
of Beirut, I savored my dwindling sea legs, ever more nostalgic
for the comforting movement. My grandparents listened to very little music but, knowing that I loved to sing, had bought me a small red and white plastic record player and a 45 rpm record, “The Lollipop Tree” by Hoagy Carmichael, to which I rocked myself into an oceanic oblivion of Kelly green and cobalt-yellow scintillations. My rocking shook the cares of the world out of my body tight from the day’s tensions and cares. They discharged toxic build-up that led to freakouts. Our house was built of heavy hand-hewn limestone, inside walls of whitewash, high ceilings, floors of loosened smooth ceramic tiles that chimed different notes as I sneaked across them in the night to go to the bathroom. My father listened to classical music from the time he came home from teaching to the time he went to bed. The acoustics in that house were grand. My father had rigged up from metal cookie boxes a sound system that broadcast music brilliantly through the large house: Vivaldi’s Four Seasons (the tawny yellow-orange of late afternoon sun on limestone), Bach’s Brandenburg Concertos (royal-sky blue of encroaching night), Mozart’s Eine Kleine Nachtmusik (cherry-pie red), Albinoni’s Adagio (the dark blue of mid-Atlantic waves), Corelli’s Christmas Concerto (august lacquer red). His choice of pieces, which he had recorded onto reel-to-reel tapes, evolved over time through different musical periods. I played the music in my head as my father drove us to school, teasing apart key changes and chord progressions, though I knew absolutely nothing about music and could play nothing beyond the harmonica. Over time, I was graced with melodic visitations that fit themselves conveniently into whatever span of quiet solitude opened up for me. I rocked myself against the back seat as I hummed these personal symphonies to myself. At home, I rocked in bed for hours on end, becoming more and more blissed out and liberated from my daily grind of embarrassment, frustration and bewilderment. Whenever I had a bad day or, even worse, a freakout, I salved it by rocking on my bed, my right arm over my mouth and nose, partaking of the golden-brown scent of the crook right under my elbow, which provided a portable comfort zone. In fourth grade, I played the role of Josephine in a medley we sang from The H.M.S. Pinafore. Throughout elementary school, I was given leading roles because I was fearless on stage and an inveterate show off. I had a favorite few stanzas of a long aria that I played over and over again from an album that I got for Christmas. In this particular song (which was not in our medley), Josephine, the supposed captain’s daughter, is bemoaning her sad fate (See Page 4) of being in love with a lowly sailor and facing a less privileged lifestyle than the one she had grown up in. My heart would sink in anticipation of the passage when the soprano Elsie Morrison’s voice changes from bright and luxuriant to dark and claustrophobic: “…On the one hand, papa’s luxurious home/Hung with ancestral armor and old brasses/Carved oak and tapestry from distant Rome/Rare “blue and white” Venetian finger glasses/Rich oriental rugs, luxurious sofa pillows/And everything that isn’t old, from Gillow’s/And on the other, a dark and dingy room/In some back street with stuffy children crying/Where organs yell and clacking housewives fume/And clothes are hanging out all day a-drying/With one cracked looking-glass to see your face in/And dinner served up in a pudding basin!…” On the last word, her voice choked up in a suppressed sob of unspeakable desolation. I also regaled myself with this passage during the climax of storms, which were especially dramatic on the mountain where we lived. The following year, I discovered the Beatles and, when they broke up, other groups, and serious classical music. My favorite pieces and songs have always been earnest and serious because these had more emotional depth and provide better escape for me than light tongue-in-cheek fare. I reserve my sense of humor for everything but music. My addiction to rocking made college dorm life difficult. My roommates would barge into the room with their boyfriends, and I’d be caught rocking to a song that had a particularly poignant key progression, spaced out and embarrassed. (Finally, in my junior year, I was assigned to what I called a “psychiatric double-single”.) At the edge of the college campus was a small bridge under which a freight train would pass at a little past noon. The hairs on my entire body would stand up straight and my body would thrill to the richness of sound coming at me. Sometimes, but not often, I could survive the blast of overtones without plugging my ears. Regardless, the climax was almost unbearably-deliciously intense. About ten years ago, neck pain and motion sickness forced me to give up the emotional and energetic release of rocking. At the same time, as I had burned through more music, it became more difficult for me to find music to fall head over heels in love with. My taste has become more jaded despite my best efforts to practice moderation and conserve my musical balm. I am on the constant prowl for new genres. This withdrawal has been a mixed blessing and curse for me. On the one hand, rocking used to provide a release that helped to keep freakouts at bay. On the other hand, it was an insatiable addiction. The more I rocked, the hungrier I got for the oblivion it afforded me and the more time I spent doing it instead of attending to more practical endeavors. I think that my freakouts and meltdowns have become more frequent and intense as my escape of rocking to music has become more elusive. I am finding myself compelled to seek out and create more neuronormal ways to tame my freakouts. Maybe this urgent need for a replacement stim will get me to paint and draw more. This is a prospect that pleases. Mary-Minn's Stim Page, June 2009 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) Show Off In second grade, I was given my first starring role, as Lisa, the Queen of Litterbugs. Lisa was the ringleader of a gang of litterbugs wreaking havoc at a picnic. I got to sing the title song, which went like this: “We’re litterbugs, we’re litterbugs. My name is Lisa and I’ll always be the Queen of Litterbugs.” The title song was a taunt with a similar singsong cadence to the timeless favorite, “Look at the Little Baby”. This role fit my less than regal personality. I was not one of those girlie-girls who fancied herself a princess. Neither was I one to squander entire afternoons dressing up their Barbies or rocking my Baby Dear. (My best and only friend, Patty, owned a Barbie and a Ken doll. I owned a Baby Dear doll only because Patty did.) I equated girls who dressed up as little princesses with prissy tattle-tales. The only baby doll I enjoyed
playing with was Ehre Der Voyjsh Der Vinn, a peeing savant. My
role as mother was to feed her water from a tiny baby bottle and
watch her pee. Even back then, I had no trace of maternal instinct.
Ehre Der Voyjsh Der Vinn made me laugh until I was a helpless
blob of protoplasm squirming helplessly on the floor, my sides
hurting, almost wetting my pants, as if in deference of her special
talent.
I loved the sound of foreign languages, especially
those I made up. I reveled in impossible Slavic heapings of consonants,
the scolding cadence of German, and the angry sound of guttural
Arabic vowels. R was my favorite consonant because it could be
mispronounced in so many exotic ways. Back to the stuff from which great theater is made: Our third-grade class put on a puppet show of Cinderella. We built puppets with paper maché faces and hand-sewn bodies. My evil step-sister’s face was all nose and colored in sinister dark-colored streaks that added up to a globby gray-brown. The precarious connection between her oversized head and messily sewn body resembled my own tenuous brain-and-body connection and poor coordination, when I look back on it. I must have done a competent job in acting and singing because, for the rest of my elementary school career, I was cast in the starring roles of our school productions, which covered the gamut from cookie-cutter Christmas Pageants to medleys of Gilbert and Sullivan operettas. (“The H.M.S. Pinafore” was the first album to which I rocked out blissfully. I acquired it even before the Beatles’ “Hard Day’s Night”.) I was fearless on stage. I had an excellent memory for lines and a strong voice. I was confident that I could improvise myself out of any slip-up. Acting and singing to an audience were a consolation for me. I was the third child in a rapid succession of five births, and was, by no means, the funniest of my siblings. My older sister and youngest brother were the mimics with rubber faces and quick wit. My oldest brother and I, on the other hand, inherited our father’s virtuosic whistling and instant knowledge of the harmonica. I was able to sing tongue-in-cheek renditions of songs from the ‘20s that my grandfather had sung, such as “Tiptoe Through the Tulips” as well as in a style loosely approximating comic operetta. I took the responsibility of my starring roles seriously. My enthusiasm and diligence far surpassed my genius in acting. Between school productions, I practiced my dubious craft. I put on plays and puppet shows of my own, replete with precarious sets and backdrops, thrown together costumes, and a loose improvisational story line that functioned as a script. I practiced my shrieks and facial contortions in front of the mirror to the accompaniment of thunderstorms, with which I’ve always been obsessed. The acoustics of the mountains, where we lived, were particularly bombastic. Sixth grade was a bittersweet time for me. It heralded the beginning of junior high, a temporary hiatus of theater, as I knew it. On the other hand, I became friends with an Armenian girl called Mellie. She was wilder and more imaginative than Patty; almost as important, she did not roller-skate and had as little use for organized fun as I did. Her family lived on the 6th floor of an apartment in Ras Beirut, the Europeanized section of Beirut. Her apartment had all the modern conveniences lacking in our big stone house in the mountain village of Beit Meri: hot running water, central heat, a drain beneath the kitchen sink, a bathroom devoid of tarantulas. The only amenity I truly envied, though, was the built-in audience. Across from her balcony with Danish Modern glass and metal railings were other balconies with Danish Modern railings. At nine o’clock in the evening, we figured that people were getting ready for bed and needed some bedtime entertainment. Mellie and I regaled them with Ricky Nelson and Dave Clark Five songs (anything more recent, except for the Beatles, was too rough for my overly refined taste); maudlin soap operas, which were contraband; belly dancing, a mainstay of Lebanese television; and TV commercials, which were a hybrid of such Lebanese classics as the Chiclet commercial (in which little kids are showered with Chiclets, an ironic twist on the relentlessly pursuing Chiclet boys in Beirut) and American commercials depicting frustrated middle-aged women in house coats bemoaning their hubby’s ring around the collar; a reassuring doctor with a creamy voice and coiffed Grecian Formula hair representing the precisely-98% of physicians who recommend Anacin for headaches; a cross-section of the face of a man afflicted by post-nasal drip, replete with upwellings of mucous; a nauseous-pink animation of a stomach pulsating “blpb blpb” from heartburn. TV was forbidden fruit. What little we did get to see on the sly went a long way in our productions. Mellie’s mother, who was dedicated to her daughter’s academic success, did not approve of me because I distracted Mellie from her true destiny as scholar. Mellie, on the other hand, was smart enough to get A’s barely cracking a book, and did not squander this talent of hers. I emulated her study habits, with less brilliant results.
Mary-Minn Sirag Mary-Minn's Stim Page, October, 2009 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) Why I Am Not Autistic I wonder whether I’m really autistic. I feel normal. It’s 8-ish in the morning, not 10:00, and I’m fully awake. I was able to get up as soon as I first awoke. I made it to bed at what my husband would call a “decent” hour because I was able to get through my bedtime rituals in less than a half hour last night; I even had 45 minutes to read. This morning, I didn’t have to go back to bed for another 15 or 20 minutes before giving it yet another college try. My brain feels crystal clear. I woke up cheerful and optimistic this morning. My husband and I meditated for a half hour, and I was able to focus for about 3 breaths. I feel invigorated and calm. I take a leisurely shower. I look at my various scents and am able to resist slathering myself with one of them. I work with someone who’s chemically sensitive. This morning, I am perfectly fine with no scent to protect me from the little stenches that usually chip away at my well-being. I have time to read the paper
this morning. I read the front page rather than cutting to the
chase and reading the horoscope and the weather first. I turn
on The Marriage of Figaro while I make myself breakfast. We forgot
to pick up eggs, so I make myself a bowl of oatmeal instead. I
actually have time to listen to the first CD. It’s wonderful
waking up to my favorite opera.
I am well rested and centered inside my body. I look at the clock and it’s earlier than I thought, even taking into account that my husband set it 5 minutes later than it is. Usually it takes me twice as long to keep on moving forward to the climactic moment of leaving the house. The phone rings and the ringing does not irritate or disappoint me. My friend wants to just check in with me. Even though we spent over three hours just yesterday on our weekly walk down to and back from the Rose Garden then a longer than estimated foray to Costco and the World Market, I am in the mood to connect with her this morning. Nothing much has happened since yesterday but I have plenty of time to chat this morning. It’s still early. In the meantime, my tea has gotten lukewarm but so what. I don’t have to pop it into the microwave to return it to its original scalding temperature and then be disappointed by the slightly altered taste. The caffeine content is the important thing, after all. I bask in a glow of self-righteousness. Usually, I’m not even out of bed by now. I can’t believe how easy it was this morning and how hard I usually make it. The secret to getting up at a reasonable hour is to get to bed at a respectable time. All I need to do is to turn off the computer by 10:00 and move forward through my nighttime ablutions, making it to bed by 10:15. Last night, I didn’t need to stay up perseverating to husband about the future of my jewelry class; I stopped at the end of the chapter of my book rather than sneaking in another chapter. I’m so glad I’ve finally figured this sleep thing out and am looking forward with great eagerness to having more time every morning. I’ve figured this out many times before, but this time I’ve really got it. What’s so hard about just getting out of bed when I first awake? I can’t believe that it usually takes 3 or 4 dry runs out of my muzzy morass. All I really had to do all along was to sit up, step off the bed, go to the bathroom and take my shower. What’s so hard about that? I don’t have to savor the fading ghost of my fascinating dream, regaling my husband with its every nuance and then plopping back onto my pillow, just trying to figure out what it was really about. My dreams come in series of set and settings. Why do we have dreams? Why do we sleep? I see fatigue as a balloon filled with bad breath. Dreams are infinitesimal holes punctured by sleep that ever so slowly fizzes out the foul-breathed fog. I have just started a new dream cycle, set in a Manhattan that’s recognizable only from inside the actual dream. Inside this cycle is a mental map of the train‘s pathway. It’s an elevated subway on a roller coaster track, except that it’s going around horizontal curves rather than up and down. I can take my sense of direction for granted during this dream cycle. I write the dream down and am done with it without falling back into it. This morning, my dream is then, now is now. I get up with no regrets. My husband doesn’t have to prod me to keep moving forward. Before I know it, I’m ready to leave the house. My launching pad is ready. My purse is on the couch and my lunch is in the insulated zippered box with a cold pack. I go through my checklist again to make sure I have everything. I walk out of the house. I kiss my husband and don’t have to ask him to rush back and bring out my day planner or something else I forgot and can’t live without. I got that all together last night. I am already looking forward to my teriyaki chicken and brown rice, with cucumbers and gomasio, and plum tomatoes picked this morning. My mouth waters in anticipation. I even have some Santa Rosa plums to munch on. For the past week or so, I have been successfully avoiding refined sugar so I am not craving sweets. In fact, they don’t even sound good to me. I decide to take a different route today just for the heck of it. I think I’ll branch out from my usual lockstep and take a new side street today. I turn on the radio and they just happen to be playing a song that I’d completely forgotten about but that fills a nostalgic hole. The nostalgia washes over me like a puddle of warmth. Usually I’m not very nostalgic about my past. I know all the words so I can sing along with it in full voice without la-la-la-ing it. Although I burned out this song back in 9th grade by rocking to it over and over again until I was good and sick of it, hearing it brings back all kinds of good memories I never even realized I had from that wretched period of my life. The usual negativity is overpowered by the soothing image of palm trees swaying against a stormy Mediterranean sky. In my memory, I’m drawing the palm trees as the dramatic sky as our French teacher Monsieur Schoucair scolds each of us in turn for our various vices. He shakes his index finger at me. “Laziness is my worst enemy. Je deteste la paresse.” He accents the silent “e” in “deteste”. Somebody behind me snickers and my heart feels caught up. But that’s just the way 9th graders are. I let it go, using my image of the palm trees as my personal safe place of repose. That was over 40 years ago, after all. I am driving well today. It’s already warm out but I have the AC at a perfect temperature. I don’t have to keep on fiddling with the dial to get it just right. I merge effortlessly, anticipating the SUV trying to crowd me out. This time, I was tracking my right, rear-view and left mirrors, as well as in front of me. I feel slightly superior to it all rather than reeling from a near death experience and wishing I never had to get behind the wheel again. I notice that my mouth is parched, a sign of impending stress. As Bob Dylan sang, “Something is happening, and you don’t know what it is. Do you, Mr. Jones?” As soon as I get to the stoplight, I reach for my blue Aqua Vista bottle. I take a swig of water and then another. I pause a second to mentally recite an affirmation, in an attempt to switch my brain back. As one of my students puts it, “I’m calm and in a peaceful mood. I’m. Figuring. It. All. Out.” I feel a crawly tightness on the surface of my cranium. I try futilely to crack my neck. I realize that I’ve mistaken a 2-way stop for a 4-way one, and the other car had the right-of-way. Fortunately, he was paying attention. I should have taken my old lockstep, where there are protected lefts and no 2-way stops. I forgot that there is a bicycle-only sign that I have to go around it in order to get to Jefferson Street. My brain is not ready for figuring this out efficiently. I curse myself for having such a slow brain. I roll down the windows and shriek in frustration. I feel electric and taste the electric reverberating through my body. My face, especially behind the eyes, is hot. I feel as if my outer skin has been peeled off, but the pain is not physical. I am autistic, after all. What was I thinking? Oh, well. Mary-Minn Sirag Mary-Minn's Stim Page, June 2008 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) A Voyage to Bend Michelle, Tim and I just got back from the MegaConference
in Bend, where we did a presentation about KindTree. We met a
lot of interesting and inspiring people, and made some good contacts—including
prospective volunteers for our retreat this summer. The Wild West
theme of the conference greatly enhanced our presentation as we
accessorized our Autism Rocks T-shirts with the cowboy hats, bandannas
and sheriffs’ badges with which the tables were adorned
on our first night there. (We were surprised that nobody we saw
had availed themselves of these excellent accessories. This made
KindTree stand out all the more.) Our presentation was fun, and we had a blast bringing our brand of fun to an otherwise serious conference. Our silliness culminated in an a-cappella sing-along of “The Lion Sleeps Tonight” during the awards banquet, right before the awards ceremony. It started out harmlessly enough, as four-part harmony by Tim, Michelle, me and Andy, the Vice President of the Arc of Multnomah and Clackamas Counties. Thence, the sing-along spread like an epidemic to incredulous folks at our table, and spilled onto other tables. As boisterously fun as it is to stay in a swanky resort with two of my favorite people, traveling inevitably brings out my autism. A trip away from home is all I need for a not-necessarily-gentle reminder that…yes, I really am autistic, and, at that, not necessarily high-functioning. It can be hard to see myself from the outside, but traveling affords me ample opportunity to make eye contact with myself and take a good, hard look at my contents–and discontents. To leave the house for anything more than a stroll along the river, I need an action plan to launch me into my subsequent realm as uneventfully as possible. Such a departure is especially perilous when my husband, Saul-Paul, stays behind. He is my rudder, stabilizer and seeing-eye brain. On Friday morning, I was to teach my painting class at Washington Park, thence to venture directly to pick up Michelle and head off to Bend. As simple and logical as this multi-stepped transition sounds, it required much breaking down of processes and procedures into miniscule steps. Even so, there was much of the final process that required thinking on my feet later— the outcome I strive my utmost to avoid by front-loading. Most of the physical logistics started out on Thursday, when I started packing, as if for a polar expedition on the Endurance. The three of us had rehearsed our talk and had drafted what each of us was going to say and when, so our presentation played a relatively minor part in my planning that night. My packing started out casually enough, with me throwing a few items hither and thither into my suitcase early Thursday evening and feeling smug about my newfound resolve to travel light. Saul-Paul went to the store more than once to pick up indispensable things, such as two-sided tape for our display board and various toiletries. He helped me locate other elusive objects, despite my embarrassed beseeching to let me figure it out. I strive so hard to be independent. Saul-Paul mapped out a seemingly foolproof trajectory from Eugene to Bend, using a succession of increasingly detailed maps, culminating in a final map of the resort itself. He explained it to me patiently, highlighted the most detailed one for me. He then printed out my final version of my part of the talk and made up a MegaConference file for me that included the maps, our talk, the conference schedule and MegaConference details. Meantime, I kept on steadily throwing things into the suitcase with ever deadening seriousness as evening waned into darkest night. I typed up an elaborate, fully formatted and bulleted list, which I triple-checked. After all, how was I going to survive away from my mother ship without my various forms of life support? I put medications and toiletries I was going to use on Friday morning in a shallow cardboard box, so as not to leave them behind. I wrote up a list of other items I had to remember Friday morning. Meantime, I had to stage everything for my class, which is a whole other sub-routine. At the urgings of my husband a while back, I have written an exhaustive checklist of things I need to bring to class. The list is too long and detailed to go into here. Upon retiring late Thursday night, I placed the unzipped suitcase in front of the door, knowing full well that shutting it that night is an act of wanton naïveté. It is hard to sleep on the night before any departure, however seemingly small. Without sturdy sleep aids, I find myself leaping up out of bed to search and toss critical items into my ballast-laden life raft. On Friday morning, I was rewarded for my intricate efforts by being able to unlock the car door only once, though I did arrive at Washington Park 5 minutes late. Indeed, I had spent the entire week before my departure running 10 to 20 minutes late. Leaving the class was easy, thanks to helpful coworkers who closed up the building for me. Michelle was ready to hit the road. The trip up the McKenzie was beautiful and relaxing, and we had plenty of snacks to tide us over, in the unspeakable event that we missed dinner. Ready access to food at all times looms ever large for me. The landing in Bend was a little rough. The turn from Hwy 20 onto 97 did not resemble the one on the map. The actual Hwy 20 fed into the real 97 deceptively seamlessly rather than turning off to the right as its counterpart on the map implied. I have a horror of getting lost or confused. Getting lost triggers an all-too-familiar feeling of incompetence, which hearkens back to before I understood the enormity of my autism’s impact on my daily life—back when I thought I could overcome my freakouts if only I could just somehow get it right, for once. Getting lost triggers a terror of losing my mind. A mind, even more than a mere body, is a horrifying thing to lose. The layout of the resort complex was as labyrinthine as my most intricate nightmares. I felt led by invisible demons over and down nose-dive overpasses; through cavernous tunnels, heavy, weight-bearing and cement-gray; up rickety staircases into dark, musty and purposelessly empty rooms draped with spent and snarled spider webs that have lost all regularity of pattern. I wept with frustration and self-hatred as Michelle and I followed one maze-like path after another, like gophers tunneling under dark and damp earth. I asked one of the hotel workers where Room 515 was, only to be informed that there was no Room 515, a fact whose existential steeliness mocked me. It turned out that the room number was 151, and that I had transposed the numbers in my dyslexic number-numbness, which made me feel stupid. Michelle finally triumphed and located our room, which turned out to be a dark smoking room. Though my sense of smell is ridiculously keen and susceptible to nausea, the darkness was even harder for me to take than the stale smokiness. I sobbed as I stumbled blindly in the futile darkness in a vain attempt to locate the things I had packed so fastidiously and to put them in real places, where I could find them. I didn’t have my Saul-Paul to navigate my world of things that flitter maddeningly in and out of my tortured existence. I felt embarrassed that my friends have to see me in that freaked out condition, and deeply sorry for being so autistic. For the rest of the weekend, I stayed close to Michelle, for fear of getting lost between the classrooms, the banquet room, and our room. Having her as a patient guide made me feel more relaxed as the weekend progressed. I was able to enjoy giving our presentations and meeting all the interesting new people. When we headed back home, we missed Sahalie Falls, where we had wanted to stop. As we entered Sweet Home, we figured out that we had taken Hwy 20 all the way from Bend. We had wanted very much to stop at the falls, but were both amused to find ourselves in the deceptively homey country rather than the towering forest. I knew then that I had finally relaxed. Mary-Minn's Stim Page, October, 2008 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) Adolescence: It May Come Late, But You Can’t Escape I hit puberty in 1969 at the age of 14; however, I didn’t hit early adolescence until I was 17, a year after I started dating. All the while, I was more interested in getting out of the house than making out. Before puberty hit, a part of me lived in a lavish world of childhood make-believe. Though I had stopped actually playing with my troll dolls (which I called Olofs), I continued to be solicitous of their welfare. I made settings for them to live their independent lives in a halcyon era that ran parallel to my own lonely and depressed existence. I built dream houses out of found materials—bathroom tiles filched from construction sites, dead plant pods, odd sticks that presented themselves on long solitary walks, and other found objects. These days, I might be regarded as somewhat of a kleptomaniac and trespasser, though the construction sites and vacant apartments I frequented appeared to be abandoned. Though I had never actually camped, it intrigued me. I created camping gear for my Olofs: pup tents, sleeping bags, duffel bags, flashlights, matches, Swiss Army knives and so forth. I tried to photograph my Olofs in their new outfits and gear close-up so as to get life-size-looking snapshots of them in full camping regalia. Unfortunately, I could not get my Instamatic to photograph from up-close, so the most prominent feature in my photographs was the towering grass where the campsite was situated.
Meantime, back in the schoolyard during recess and lunch, the late ‘60s was a confusing time to be a teenager. The family of my best and only school friend had moved away that summer. The Summer of Love trickled down to my 7th grade existence in strange ways. While my classmates were busy making out, experimenting with drugs and being elitist snobs, I was trying to make friends. One girl from one of the “groovier” druggy cliques took a brief interest in me. She mistook my weirdness for experience with psychedelics. Once she discovered I was just weird, she dropped me. My only friend was 8 years old and went to the British school. At home we did craft projects, put on silly plays, went on picnics with her family, and, when we were bored, tormented each other: I, by dangling giant rubber spiders in front of her and she by “forcing” me to walk barefoot. My technique was enhanced by my downstairs bedroom, a dank lair for tarantulas and centipedes. In my school life, I careened from one false and incompatible friend to another. One of these friends collected outcasts like me and played us against each other by switching alliances almost weekly. Right before 9th grade, she and I simultaneously and tacitly ended our friendship after a 3-day overnight at her house. One afternoon, she and her other friends locked me in her bedroom. During that same overnight, she facilitated a “Beach Club”. Each of us took turns in the “hot seat” while the rest of the group spoke their minds frankly against the victim on the hot seat. Being “frank” consisted of bitching out the victim, hence the “beach” double-entendre. Normally loquacious, I was rendered mute. When my turn came, I fled the room and left the lot of them to malign me in my absence. When I was in the middle of 10th grade, my family
moved to Frederick County in Maryland. I was almost 16. The public
school was a vocational high school. I was looking forward to
a clean new start in a school where nobody remembered my freak-outs
during arithmetic class and my disruptive clowning. Because I
planned to go to college, I was placed in the small academic track.
By way of infuriating contrast to my ineptitude in team sports I was okay at sports that required mere agility and stamina. I was a better swimmer and runner than most; in fact, I was the second fastest sprinter in P.E. During that first year, boys followed me down the hall, mimicking my clumsy stride and rocking, and singing “Tennessee Birdwalk”, a silly C&W song about the Dodo bird. One day, the football star graced me with an invitation to sit in the middle of the cafeteria with him and his jock friends. Though I was attracted to none of them, I was pleasantly surprised that popular boys would invite an outcast like me to have lunch with them. The flattered feeling turned to humiliation as each took his turn to up and leave the table, abandoning me to a sea of surround-sound jeering and clapping. Over time, my tormentors’ lack of subtlety
honed my sense of identity and survival instinct. My sarcasm blossomed,
making me a less enticing target. My tormentors turned out to
be from the commercial and stenographic classes, especially the
hardscrabble future secretaries. Their torture continued in typing
class, from which I was finally expelled due to too many frustrated
freakouts. I wanted to take auto mechanics and shorthand but was
afraid of being bullied. That summer, I enjoyed a light Platonic fling with one of my general store customers, who was attracted by my ditziness. Rick was a geology graduate student from Johns Hopkins doing his fieldwork in western Maryland. He took me to stock car races and demolition derbies, which I saw as offbeat and exotic. One night he cooked up a romantic dinner at his remote cabin. The candlelit dinner turned quickly into a hairy adventure when a heavy storm hit and the bucolic creek separating his house from the road swelled to a roiling river we had to ford to reach the road. I caught bloody murder when I got home. After he returned to North Carolina, I never heard from him again. I felt hurt but recovered after about a week of dramatic droopiness. In 11th grade, my academic facility manifested. It helped that I was accustomed to higher academic standards from my days at the “prep” school in Lebanon. My fellow students warmed up to me when I tutored them in various subjects. On the day before physics exams, I became downright popular with the jocks. I went out with a motley assortment of unlikely “suitors”, feeling obligated to go out with whatever protoplasm happened to ask me out. I went out with them mostly to get out and have some fun. I lived out in the country and didn’t learn to drive until decades later. I even spent a couple of evenings attempting to roller skate around and around the rink with one dull and pimply redhead from the commercial class who pursued me relentlessly and, when I refused to put on his school ring, got his sadistic friends to resume their P.E. torture. By then, I was more impervious to their taunts: for one thing, the more athletic girls in my class stood up for me; for the other, P.E. was becoming less cool. That spring, we declared a Junior Hook Day. My friends and I headed down to the Potomac to get stoned. The jock girls went somewhere else. My most sadistic tormentor ended up in the emergency room with a coke bottle in her crotch. Alas, I never got to hear the upshot of that mishap. I enjoyed dating but couldn’t seem to fall in love, hard though I tried. I remembered my 9th grade English teacher remarking that anybody who doesn’t cry during the movie “Romeo and Juliet” has a heart of stone. In my senior year, my best friend asked me whether I was a lesbian because I kept staring at her breasts; whereas, in actuality, I was parking my restless eyes on her mouth and chin to avoid making painful eye contact with her. I hoped fervently that I wasn’t a lesbian. It was hard enough being “straight”! In 12th grade, one of my boyfriends took me to Gapland State Park in the Appalachian foothills, where we made out in his ’67 Mustang to the melodious strains of Blood, Sweat and Tears on his 8-track. He gave me his engagement ring, which had been his mother’s. I enjoyed the idea of being engaged, but had no real intention to marry him. He took me home and his mother regaled me with a litany of horror about his stinky socks and overall slovenliness. I was mystified by her need to tell me all this. I went off to college and he got another girlfriend shortly thereafter. I mailed him back the ring. Meantime, the psychedelic Free Love culture of the late ’60s had degenerated further into jaded promiscuity and recreational drug use. Many boys were in college to escape Vietnam; others wanted to avoid having to get a job during the Recession, so academics were a low priority. Though I was an undisciplined student, I craved academic challenge. Meantime, on the romantic front, Women’s Lib provided an opportunity for males not to open doors or offer their seat on the bus to pregnant women. The Summer of Love had percolated down to a sense of entitlement for males, a cutting to the chase when it came to courtship. Boys who had failed to get me into the sack on the first date told me that they “respected” me and then moved onto their next quarry. Sex back then was a game of chicken. Women’s Lib and the Summer of Love provided males an excuse to expect sex on the first date with as little chivalry as they could get away with. Meantime, my objective was to extract as much fun and adventure out of them without getting pregnant or contracting VD, as STDs were called back then. Boys saw my romantic indifference as prudery; others pursued me all the more, mistaking it for playing hard–rather than merely impossible–to get. Looking back on all of this, I was more of a romantic before puberty than throughout my adolescence, which lasted through my mid 20s, well after I started making a living for myself. Mary-Minn's Stim Page, March, 2008 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) On poignancy When I was young, I had a narrow range of feelings I could handle, especially in books and movies. Scary movies and sad books terrified me and left me bereft. I am mystified by how elementary-school children can handle the violence in current movies and TV shows, even Disney movies. When I was 8, I couldn’t finish Charlotte’s Web because Charlotte’s death was unbearably painful and unfair, especially for a spider. (I loved spiders.) That same year, I tried to read The Orphans of Sumatra, but had to put it down when the parents are taken away from the children. I think I was 12 or 13 before I could take up this book again and make it through to the happy end, when the children are reunited with their parents in Switzerland. “These vivid scenes flashed in front of me for over a year, ambushing me when my guard was down, terrifying me out of my wits, and punctuating erratic sleep. ”
This movie was one in four in my life that I have walked out of on my own accord. (The other two were A Touch of Class, The Pianist, and Hostel, the last two of which I ventured into, stupidly mistaking the title for a silly European caper.) I couldn’t sleep for the next few weeks, at least. These vivid scenes flashed in front of me for over a year, ambushing me when my guard was down, terrifying me out of my wits, and punctuating erratic sleep. To this day, I avoid movies about war. Our freighter tanked up at Tripoli, Libya. We disembarked for a leisurely afternoon of sightseeing. The scene from the harbor blazed white and blue: the whitewashed luxury hotel, an expanse of cerulean blue sky and white sand, regal palms lining the impressive boulevard, donkeys and taxicabs. We walked through the city to the souk (the city bazaar-market) which comprised blocks of cozy-dark tunnels snaking through a vast continuity of tents, punctuated by tiny booths, demarcated by sumptuous Persian carpets; merchants pressuring us to buy their wares of sheepskins, 24-karat filigreed jewelry, carpets, hookahs, what-have-you. On the way to the souk, I saws a middle-aged man sitting, wan and apathetic, on a stoop in front of a door, which opened into an empty room with a dirt floor and nothing besides a narrow bed. Every school day in Lebanon, I had ridden, jaded and indifferent, past Palestinian refugee camps on the way to school, but this understated vignette of loneliness and desolation somehow insinuated itself into my burgeoning catalog of horrifying images–first of war, now of poverty. By way of human contradiction, I do enjoy a “good” horror movie now and again. I can tolerate some gore, just as long as the plot is far-fetched but logical, and the movie is well made. Horror movies leave no lasting mark on my sleep. Indeed, when I leave the theater afterwards, I feel relieved–as when I awaken from a particularly colorful nightmare–that “reality” isn’t quite so bad, after all. For this guilty pleasure, I use the pretext that these movies are an opportunity for my cowardly self to vicariously bone up for any real-life horror that comes my way. At the other extremity beyond my spectrum of acceptable emotions was sentimentality and nostalgia, both of which I still am a little leery. Nostalgia throws me back to youthful foolishness. Sentimental movies exposed my emotional vulnerabilities. When I was growing up, my family and I were
living in a Greek Orthodox Lebanese mountain village called Beit
Meri, which translates into Mary’s House, as in the Virgin
Mary. It was a Greek Orthodox village. Movies were subtitled in two of three of the languages spoken in Lebanon: Arabic, French and English. I couldn’t read Arabic, but I could compare French subtitles to the English I was hearing and vice-versa, or what little spoken Arabic I knew to the French and English subtitles. I still enjoy trying to figure out what’s being said in foreign movies or, at least, comparing what scant dialog I do understand to the subtitles. Musicals were “all the rage” back then. The movies I remember seeing at Le Capitole were Ben Hur, Around the World in 80 Days, an assortment of John Wayne movies, French romantic capers set in the Riviera accompanied by jaunty French pop tunes (or the movies accompanying the pop tunes. I couldn’t tell which), and Julie Andrews’ musicals, especially The Sound of Music, which we saw at least a dozen times, for lack of anything better to do on a summer day. Not that we were wild about The Sound of Music, especially after the dozenth time. Proud of our supercilious discernment, we found it goopy and sentimental and utterly predictable. Mary Poppins we found just as silly and unsophisticated. Watching The Sound of Music gave me a binged-out sugar blah. When I watched The Sound of Music a few months ago, however, I experienced a completely different movie, though the scenes were true to my memory. I found myself rejoicing when the captain allowed his musical children sing again, though this outcome came as no surprise to me. I cried when Lisl’s old boyfriend, who had since joined the SS, sneaked into the garden to give her a heads-up about the Nazis’ plans for her Jewish family. That the Von Trapps were Jewish had escaped me as a cynically naïve child, who knew even less history than I do now. In the third-to-last scene, when the door out of the amphitheater remains empty after the audience’s encore, my heart swelled with emotion and suspenseful anticipation in the knowledge that they were making their escape to Switzerland. The Sound of Music I saw recently was, if anything, curiously understated. In college, I refused to cry in Love Story, the tearjerker of my college years. It seemed so maudlin back then. I haven’t seen it since. The young woman died of cancer, is all I remember. Cancer is not maudlin stuff, when I look back on it. I now allow myself to cry in poignant movies. I also cry from deep nostalgia, such as watching George Harrison’s Concert for Bangladesh, which reminded me of youthful foolishness and a yearning for the idealism of the post-Vietnam ‘70s. (You know you’re getting old when you start bemoaning lost eras of halcyon youth.) Perhaps my youthful cynicism about things poignant had everything to do with my early inability to finish sad books, because the sadness was too much for me to bear. For me, crying provided no catharsis, but rather plunged me into a weepy abyss of ever-deepening melancholy. Now artistic tragedy provides me a finite opportunity to cry without the open-ended weepiness from personal grief. Tragedy in art creates a cathartic closure. Personal tragedy just goes on. Mary-Minn's Stim Page, October, 2007 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) Behind the Wheel My biggest adult milestone was learning to drive at the tender age of 35. It was an uphill battle–both up steep hills in San Francisco and on mountain roads, and up against self-doubt, which was pounded into me further from the time I took drivers ed in high school until I took it upon myself to hire what I called a “special ed” driving instructor. My life journey in driving has been a multi-faceted case history of living with autism, before autism became a trendy topic of tear-jerking feature articles in People Magazine. My driving history started in rural western Maryland with Drivers Ed in 11th grade. Brunswick, where I spent the last 2-1/2 years of high school, was a moribund railroad town near the foothills of the Appalachian Mountains, across the Potomac from Virginia and Harpers Ferry. Most students had lived nowhere else. Many of them had grown up in poverty.
The Drivers Ed instructor Mr. Horine, was a
mean old (read, probably 55-year-old or so) sourpuss who prided
himself in his superiority in spelling. One day, he bet us a dollar
that none of us could spell Fahrenheit. I was enraged by his presumptions
that we were all “idiots”, especially since so many
of my fellow students came from impoverished and disadvantaged
families, and had heard little else. I figuratively stuck my tongue
out at him, marched up to the black board, and spelled Fahrenheit,
sticking my palm in his face to get paid now. He was not amused,
though my fellow students were. In his eyes, this petty act of
defiance transformed me from a skinny know-it-all to a force to
be contended with through the rest of his tenure with me. The cars we drove were spanking new (1971) pastel yellow Catalina Pontiacs, with 8-cylinder engines. Mr. Horine would stand on the sidewalk as he barked commands over a megaphone at the cars. In retrospect, I find it strange that the cars were so luxurious; whereas, we had only one instructor for 20 students. Two students were assigned to each car. He barely explained the controls before asking us to back up and then drive around the range. After shifting jerkily from reverse into drive, I stepped on the accelerator, and found my partner and me sailing through a cornfield. She was shrieking in terror; I was frozen by my confusion with this huge boat I was trying to maneuver. From then on, she would slam on the brakes whenever I depressed the accelerator. One of my many problems was that I was too short to see over the looming hood, which made it harder for me to see the cones and judge my distance from them. Worse yet was my difficulty making the conceptual leap from cones to physical obstacles, so I was constantly denting and running over cones. I was hopeless on the last two days, as well, when we actually “hit the road,” an all-too-apt description of my nascent driving style. Mr. Horine held onto his grudge against me. He gave me the lowest passing grade because he didn’t want to be required to teach me all over again at no charge. He made this explicitly clear to me. I passed the written part of my driving test and got my drivers permit, but my parents were too scared of my curb-hugging driving style to travel with me behind the wheel, so the rigors of drivers ed were all but wasted on me. People disparaged my ability to drive ever. I spent the remaining 20 years dealing with not being able to drive. When I was 24, I moved to New York City, partly to be able to get around easily without a car. I lived in big cities (Washington D.C., New York, and the San Francisco Bay Area) for the next 11 years, and missed being able to drive when I wanted to “get out of Dodge.” When I was 31, I decided to actually learn to drive. I looked in the Yellow Pages, and happened upon an ideal instructor. I told him that I needed a special-ed driving instructor. He told me that he taught many older adults such as myself. He was a gentle and patient man, a former accountant from England who shared my love of 19th century English literature. It took me 17 lessons to drive sufficiently well to aim the car in the right direction while keeping inside my lane. I passed the driving test by a razor-thin margin. The man who was testing me just so happened to be traumatized by a serious injury incurred during a previous driving test, so he directed me gingerly to make safe decisions. Over the following four years, I went out driving twice to Muir Woods and Mt. Tamalpais in a rental car. It wasn’t until 1989, at the tender age of 35, that I bought my first car, a 1978 Toyota Corona station wagon, and started driving in earnest. My future husband and I were moving to the Sonoma coast range for our brief back-to-the-land stint. The property we were trying to buy was in a somewhat remote location on privately maintained gravel roads, off the electrical grid. Driving was essential. For that first year, I aimed the car carefully, relying heavily on my hair-trigger reflexes. My brakes failed during our second day there, as I was driving down the mountain on a lane-and-a-half hairpin turn overlooking a cavernous precipice, with no any guard rails. Fortunately, time slowed down for me, giving my brain time to aim the car into the upward part of the vertical cliff, while avoiding hitting the fuel tank. I emerged physically unscathed, my car needing no more than a transfusion of brake fluid and a plastering of duct tape around the tail light on the passenger’s side. Though my driving record so far is clear of accidents, driving smoothly has been an ongoing challenge for me–and even more problematic for my hapless passengers. I think this has something to do with Theory of Mind: whereas I am at one with the movements of a car with myself at the controls, I am not at one with what it feels like to be a passenger behind my wheel. In short, I lack kinesthetic empathy. On the good flip side, I seem to have inherited trigger-fast reflexes from my daredevil maternal grandfather, who was a race car driver, a barnstorming pilot, a record-breaking parachuter, and Army-Air Force pilot between the wars. (He died in his 20s, testing an Army Air Force plane.) My genetically endowed reflexes are offset by a bad sense of direction, a poor recognition of many things including places I have been, total reliance on rote memory, and fear of having to think on my feet. If there is an unforeseen fork in the road, it is almost a certainty that I will pick the wrong road, even if I’ve encountered that fork befor e. I have yet to figure out some way to second-guess my decision making with reverse psychology, by calling on my iffy intuition and then going against it. I have lived in Eugene for 16 years, and have memorized various lock-step routes to and from my various destinations. From these lock-step routes, I radiate to new destinations, usually opting for rote easiness rather than directness or efficiency. I avoid left turns without lights. I try to go with the dominant traffic flow, with rather than against the right-of-way. I scrupulously avoid new routes, where I risk having to figure out too quickly whether it’s a four- or two-way stop or how to merge into a dominant lane fraught with unyielding drivers. When I am at a four-way stop is the only time I overcome my discomfort with eye contact; I rely on it to read the intentions of the other drivers. (I also think that driving requires some ESP, as there often is insufficient information to make informed and safe decisions.) I use my good rote memory to avoid lane changes–or, even better, to stay in the same lane. Despite having memorized these routes, I often find myself lock-stepping to the wrong destination. Keeping all these things straight keeps my mind at attention. I am quite terrified in parking lots because right-of-way is so ambiguous. When reversing, I encounter many nasty human and motorized surprises. The larger and more amorphous the parking lot, the more avoidant I become. I would sooner have to walk across the parking lot than park in a packed no-zone closer to my destination. Same goes for prepaid parking garages, whose rules mystify me. On the other hand, I have always been good at parallel parking, as it’s only a matter of figuring out a formula for when to start turning the wheel; even if I don’t make it the first time, I can turn in and out until I get it right. I have heard that many drivers space out whole portions of their journeys because driving is so mindlessly easy. Not so for me. Even after 18 years of driving under different conditions, I haven’t lost the white-knuckled immediacy of driving or the gratitude of surviving almost daily brushes with the grim reaper. I see my driving experiences as a parable about living with autism. Driving provides a constant reminder of my rigidity toward sudden changes in plan; my difficulty multitasking, changing direction or focus; my reliance on rote memory; my poor navigation skills. As if these limitations aren’t hobbling enough, I find myself up against a deficient Theory of Mind especially toward my passengers. The rich irony is that I simulate a Theory of Mind toward my road mates by making eye contact with them, as it is essential to understand their intentions at a glance. Driving has forced me to develop a level of awareness that I otherwise would not have. Mary-Minn Sirag VISIT
eSCRIP and
Help Us OUT!! /
Mary-Minn's Stim Page, March 2007 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) Hard-Knocks Social Stories Every difficult thing I’ve ever learned, I’ve learned from the school of hard knocks. The experiences I am writing about go back a good 30 years. I wince as I write this, but at least I now have a longer perspective on this subject. Manners are my concern here. Until recently, I found etiquette books unfathomable and incomprehensible, so I stumbled through etiquette reinventing the wheel for myself. Now I find etiquette books a pleasantly irrelevant distraction, comparable with people’s fascination with Sudoku or crossword puzzles. Thirty years ago, I loved visiting other people. Partly, I was fascinated by the juxtaposition between the inside and outside of houses, and what went on inside these houses. I was fearless and adventuresome about the now-chilling prospect of living with someone or having someone live with me. I inadvertently made both circumstances either extremely easy on myself or onerous on my counterpart’s–usually a trying combination of both. “I
found myself
It took my being on the other side of this interpersonal dynamic to wise up to my insouciant cheapness. Once this started to dawn on me, I was so ashamed that I developed some shyness about inviting or visiting or accompanying other people on their car trips or such, for fear that I’d mess up again. In the summer of 1975, a newly widowed family friend invited me to live with her and her family in Washington, D.C., over the summer. She gave me a seemingly straightforward set of rules. She told me to help myself to anything in her house, provided I replace it or put it back where it came from. It turned out that the rule sheet wasn’t as straightforward as simply leaving no trace–that hidden rules lurked. I lullabied my confused troubles away by rocking back and forth to monumental orchestral recordings or psychedelic pre-metal rock on my host’s 16-year-old daughter’s bed in the basement, the only cool room in the house. I soon learned that my host’s record collection was off-limits, as she didn’t want me to wear out her albums by playing them “too often.” The youngest daughter was very kind and never complained about retreats to her basement bedroom. From 8 p.m. to 4 a.m., I worked as a cocktail waitress at a bikers’ bar north of Georgetown in Washington, D.C. The bar was renowned for having the most tiltable pinball machines in D.C. During the day, I hung out at the National Gallery and Smithsonian, as much for the solitude as for the inspirational art. My host told me that I could come and go as I pleased, that she was not responsible for anything I did since I was not her child. (I was 21 years old.) I came home one night at 6:30 a.m., after a leisurely breakfast with some friends of mine from work. My host was waiting up for me, despite a debilitating chronic health condition. She invited me to her family dinner parties, which I came to dread. During the cocktail hour, their older daughter, who was 21 and utterly despised me, would ask me to shut up in front of their friends. Dinner would be a round-robin talk show, after which my host would critique my social and intellectual contribution. The topics would be liberal politics as covered in Newsweek or the Washington Post. My intellectual density on history spilled over into politics. The only way I can understand politics is to cover, on assignment, news stories about individual issues; thence I can branch out cautiously into a larger connected picture. I need to be on the scene, feeling the issue on my skin and being paid to recount it accurately. Anyway, that fall I left for college without thanking my hosts for enduring my maladroit presence that entire summer. It took me 15 years to understand my unwitting role in the Lemony Snicket-esque series of unfortunate events that summer. By then, my erstwhile friend had long since died. In 1977, while taking an intensive Latin course at the Summer Latin Institute in New York, I made a brief visit to a close childhood friend of mine who was living in Boston with her boyfriend. I wanted to treat them to dinner but hadn’t brought enough money with me. They had just moved into a lovely old flat with hardwood floors. They still had boxes and clutter to put away. The only empty room was the front room, which they had freshly varnished. The front room breathed freedom to my unconscious claustrophobia. On the morning of my departure, I found myself standing amid the wet new varnish with sticky footprints marking my path. That was the last time she would let me talk to her. There was no apology possible. I was appalled by my behavior, and started working hard to address these deficiencies of mine. I learned the importance of paying my own way, though some hosts would insist on accepting nothing from me, which put me in an awkward pickle as to whether they were being coy or were genuinely did not want me to pay, for some reason or other. I still find it exceedingly difficult to read people’s intentions about sharing, so I try to avoid visiting people unless we’ve discussed these logistical agreements, such as when/if I can take a shower, how will we do food and chores, what degree of quietness or interaction my host wants, and other subtle vagaries of sharing a domicile and daily routine that are otherwise so easily taken for granted. One of my friends from the Summer Latin Institute invited me to stay at her family’s apartment in Brooklyn after I moved out of the NYU dorm and was looking for my own apartment. She insisted on giving me her bed and sleeping on the living room couch. Though she complained vociferously about back pain and poor sleep, and I had no back problems, she forbade me to sleep on the couch. The family wouldn’t let me pay for my own laundry, let alone my share of food, lodging or chores, with which I wanted desperately to help out. One dark and stormy night, my friend alluded to my lack of pride in mooching off her family, though it had been at her insistence. I stalked out into her unsafe neighborhood that blustery night, but her mother insisted that I stay and apologized for her daughter. (to page 3) The following day, I bought my friend an oversized monogram of Leonardo Ad Vinci’s drawings as an apology for a pointless argument we’d had as to whether Michelangelo or Da Vinci was the superior artist. I left her house that day and thanked them as graciously as I knew how. More times than not, however, people have forgiven
me my social transgressions, knowing somehow that though I have
major lacunae in the social arena, I am not intentionally exploitative
or dishonest. Some friends have been so kind as to point out my
errors at the time, providing me with an actual “teachable
moment” to which I initially react defensively, though I
am learning to appreciate their honesty and courage in helping
me navigate these things more graciously.
Mary-Minn's Stim Page, October 2006 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) 1978 was a banner year for me in
sheer quantity of jobs held. That year, I blew through 12 jobs
“like they were Kleenex,” as my older brother put
it. I was living in Manhattan, studying life sculpture during
evenings at the Art Students’ League on West 57th Street,
sharing an apartment on the Upper East Side with my parasitic
boyfriend and making ends meet catch-as-catch-can. "Health and safety standards were quite beside the point at the Chocolate Factory. Being germ phobic, I threw out the dropped chocolate when nobody was looking. "
Mary-Minn Sirag
The first day after being ill is wonderful, indeed. My senses are alert without being too sharp. My brain can follow a logical pattern again. The temperature outside not only is perfect, but feels perfect. Colors are bright, and spring smells sweet again. I am well rested, after 12 or so hours of sleep, and I could eat a house if only a realtor would give me one to chaw on. My body is clear of aches and pains. My illness was a four-month flood of high anxiety, depression and freakouts that crested just last night with a skin-crawling darkness of the soul. It started out insidiously as my customary winter depression. "I lost my ability to anticipate, recognize and ward off my Confusion Triggers. "
A friend of mine had successfully diminished a recent trauma of her own with a five-session course of EMDR rapid-eye movement cognitive therapy treatments, which heartened me. I determined that I too could weaken my own freakout triggers with a course of EMDR, since my triggers are specific: losing things, getting lost, and not knowing what I am supposed to do in any given moment. I had even figured out the specific experiences leading up to my triggers. Thinking that five sessions of EMDR would fix me was my second mistake. In a metaphoric and less than scientifically rigorous nutshell, the rapid eye movement, by stimulating both sides of the brain almost simultaneously, rearranges trauma-induced neural pathways that are activated by stimuli the patient associates with the trauma. The goal is to scramble these pathways sufficiently to disentangle the multitude of triggers from the initial trauma. Later on in the process, reintegration supposedly occurs after the brain has formed new pathways that are squeaky-clean of the trauma and its ramifying surrogates. The therapist provides the patient
with a safe venue to revisit these traumas as the patient’s
eyes track the therapist’s rapid back-and-forth hand movements.
After helping me to come up with comforting images to keep in
mind, my therapist told me to relax and follow my thoughts. Alas, the therapy was worse for me than merely ineffectual. As promised, my brain felt scrambled for a few weeks, which was initially reassuring, as something seemed to be happening. The awful part, though, was that it never unscrambled completely to reintegrate its moorings, so my triggers became more random and unpredictable than before. Perhaps the requisite five expensive treatments were insufficient for my slow processing of information; however, by then, I was done with throwing good money–and time–after bad. My mental health cascaded from there. My anxiety worsened from mere agitation and nervousness to a pervasive sense of im-pending doom and wrenched anguish. Daily, I awoke in a cold sweat of panic and foreboding, dreading the day’s unfolding. Premoni-tions of death loomed as I got behind the wheel, and my mind perseverated on near-accidents. My skin crawled as though trafficked by tiny vermin. My brain felt ready to pop out of its skull. My innards clenched. Things I had said reverberated back at me days later in a hollow mockery of my voice. My heart raced as though my veins were going to explode. I felt windswept from the inside. I developed a gripping and galloping-stampede social phobia. During the last week of my crisis, my anxiety culminated in a low-grade fever that kept me unpleasantly hot, though the ambient temperature was pleasantly cool. Toward the very end of my long episode, I craved solitude but couldn’t stand to be alone. I lost the ability to keep things properly organized for myself, which fed one of my two worst freakout triggers: losing things. I couldn’t remember where I had–or even should–put things. My visual processing and sense of direction deteriorated, as did my problem-solving and troubleshooting ability. For instance, I often neglected to check the phone book and my various street maps before venturing out into even slightly uncharted reaches, thinking that “everything is going to be alright.” I forgot to eat frequently enough, rendering me woozy, irrational and irascible. Though I continued to print out my checklists for leaving the house in the morning, I glossed over important checkpoints and neglected to close important loops I had opened, such as strapping my keys to my right-hand pocket in order to keep myself safely attached to them. During this four-month period, my freakouts increased in frequency and intensity as I lost my ability to anticipate, recognize and ward off my confusion triggers. Each freakout left me raw and vulnerable to even worse subsequent ones. They evolved from fits of obscene ranting and high-decibel shrieking at my frozen-up computer; to stapling my wrist, cross-hatching one arm with a serrated knife and bruising the other with the clenched fist of the first hand; to a stomping and shrieking rage of frustration and confusion-panic at a dear friend and her family due to an unreasoned assumption I had made in a state of hypoglycemic exhaustion. My friend and her family accepted my abject apology. I then dissected and analyzed my recent hell with her, other friends and family. In place, yet again, are my protocols of prevention: When my brain is slower than the world around it, I am to request a smokeless break to sort and map things out in my mind, to look up the address in the phone book and the exact coordinates on a map. Whenever I leave the house, I am to pack plenty of nourishing protein to fuel my brain. Whenever I feel that hazard bubble ascending from my gut to my brain, I am to stop and figure out what my spider sense is trying to tell me. As the egg man at the Marin County farmers’ market told my sister, “Don’t be too hard on yourself.” Mary-Minn Sirag
Mary-Minn's Stim Page March, 2006 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.)
Before I “came out”
with my autism by joining the autism community in late summer,
2000, I wanted nothing more than to be given a chance to be a
Leader. I wanted to spearhead everything from activities to movements,
though I had no specific mission at that point. All I needed was
the authority to lead–or so I thought. After all, I argued
with no one in particular, I was good at giving feed-back without
being judgmental or critical. The school of hard knocks had taught
me not to be a micro-manager. I had chutzpah. I was fearless about
taking responsibility for my mistakes and learning from them.
What more did a good leader need? "My frequent
brushes with failure in group activities had been due almost invariably
to others’ unenlightened leadership,
Mary-Minn Sirag Mary-Minn's Stim Page September, 2005 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) The
nonverbal “language” of obsessions "My compulsions slowly evolved into strange mental obsessions."
Mary-Minn Sirag Mary-Minn's Stim Page June, 2005 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) I write this on June 18, 2005, which is none other than Autistic Pride Day, a glorious day redolent with thunder, lightning, dou-ble rainbows with intercalaries, cloud formations and shadow play. Mark this day on your calendars next year, if you haven’t already. I’d be attending a choir party tonight or discussing philosophy in some dank church basement if my life were the same as it was before coming out with my autism almost five years ago. Contrary to the DSM stereotype, I, like so many autists I know, am extremely social. Being a social autist forces more personal growth than staying true to the asocial stereotype–so untrue to my very nature.
“I doubted my ability to contribute anything useful.”
Until five years ago, I earned my financial keep in conventional corporate settings, with all the competitive stress. Again, my bad employment choices reflected my lack of executive function to fashion a more suitable career, without pre-existing organizational un-derpinnings. Lacking the concept of executive function exemplified by this deficiency of mine, I was ashamed of the spectacularly au-tistic dichotomy between certain “splinter skills” of mine and my inability to cobble them together into anything useful. I wondered if I might be living down my “retarded” diagnosis from 1957, after all. Being labeled “retarded” at any age leaves its psychological resi-due. Group dynamics were torture for
me. Much of this was due to my faulty joint attention, my inability
to walk the conversational tightrope between listening and talking
that comprises turn taking. (Until this winter, I was mistaking
“joint attention” for a knuckle cracking obsession,
which fits me equally well.) This inability became all the more
poignant in conversation. My enthusiastic me toos with their verbose
rejoinders would alienate all too many of my interlocutors. Many
of those who chose to overlook these faux pas were put off by
my astringent defensiveness toward any patronizing or trite replies
to my. Being silent turned out to be my smartest option. Being
one to prefer private silence required me to quit these groups.
That was way before I gave myself permission to rein in my energy
and ground myself by drawing, but that is a whole other longwinded
story. On my Census rounds, I happened
on a massage therapist, who told me about KindTree, and promptly
foisted me on them. I was afraid of being rejected from yet another
group, this time for being insufficiently autistic. Furthermore,
I had lost all confidence in my group skills, so I doubted my
ability to contribute anything useful. I was clinically phobic of public speaking. By “clinical,” I am referring to out-of-body, profuse sweating and flushing, dizzy, nauseated and near-death panic. At the various philosophical discussion groups I had attended with my husband, I would dispatch my turns unceremoniously with speedily terse statements while other people would wax grandiloquent in their august profundities, or, like my husband, utter a few insightful, cogent and eagerly awaited gems. I also had gone to a couple of support groups for my various afflictions and problems, only to worry myself even sicker after-wards about my bad performance. My first talk at that retreat was atrociously bad, but mitigated for me by the indulgent kindness of my hosts and the other autists. My poignant embarrassment about my bad talk was palliated by my spiritual experience of that first retreat, where I met my first au-tists, also kindred spirits. I cried all the way home, from a joy born of liberation to come. Those who know me would probably agree that I’m averagely sentimental, not particularly lugubrious or weepy. When I do cry, it’s generally out of despair rather than tender emotions. From then on, I could not wrest myself from KindTree. I was hooked. There was no getting rid of me, by tactful or other means. And nobody even tried! The magic was everywhere; KindTree was atwitter with romance and friendship, starting with Michelle and Steve’s romance that had birthed KindTree’s first retreat, in 1996; out of this retreat, the rest of KindTree has flowed. Michelle and Melissa, who were to marry four years later, had met at the retreat the previous year. Tim and Nel, who married the same year as Mi-chelle and Melissa, had met at the Developmental Disability (DD) in-service, conceiving KindTree’s monthly autism support group, in response to an Aspy in the audience. Nel’s support group has bred
many autistic friendships, including many of my own. Two of my
friends met at a retreat planning committee last year, and have
been “peas in a pod” (their expression, not mine)
ever since. Our little nonprofit’s breeding
proclivities compensate handsomely for my own lack of breeding
or human progeny. It has helped spawn activities and organizations,
as well as individual relationships. Bridgeway House was born
in October of 2002, five months after the parent panel at KindTree’s
first Autism Forum. We also caught up with Nan Lester’s
Asperger Counseling Northwest, which not only has cracked open
Eugene’s 4J School District to Aspies, but, in the process,
has catalyzed many friendships among autists across generations,
family members and professionals. Nan Lester has started a monthly
Asperger issues discussion group for Aspies. Mary-Minn Sirag
Mary-Minn's Stim Page March, 2005 (Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) Autism
has become a pervasive topic lately, leading to increased
public awareness, both informative and misleading. The very topic
has evolved into a veritable “special interest” in
the media.
“I
held my Dirty Little Secret of being autistic At the time, I had met no other
autists, let alone autistic adults. I had heard of my mother’s
autistic nephew, who died in an institution shortly thereafter.
My mother told me about a younger second-cousin (a nonverbal woman)
from the same branch of my family tree.
(Here are personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) Developing a cultural understanding of autism. June 6, 2004 In August of 2000 I met my first fellow autists, at KindTree’s autism retreat. My memory flashed on friends who probably had been struggling with autism their entire lives but didn’t know it. I say “struggling” because living with autism without an autism community is like living undercover in an alien culture. My first autism retreat, where I was invited to speak about my autism, was a spiritual awakening for me. I was phobic of public speaking. Being an exhibitionist and show-off did not make me a public speaker. Though I had acted and sung solos from second grade through college, I could not speak coherently in a group situation. My first talk is veiled by a merciful amnesia. I think I rambled and derailed a lot. Keeping on track while keeping going--and in real-time, no less--was next to impossible for me back then. Steve Brown, who was KindTree’s president back then, had the sagacity to facilitate it the following year, which made for a better talk. Even more profound than my debut into public speaking was meeting those first autists. I felt a telepathic kinship with all the autists there, except one little boy who was having difficulties. Like many “new” autists, I was nervous about being around “low functioning” autists. Though, unlike many “higher functioning” autists, I don’t remember being afraid of being lumped in with the “lower functioning” ones, I wondered if I’d know what to do with or say to them. I feared most being excluded for not being autistic enough! I was to learn later that I was not the only “new” autist to see myself as uniquely “higher-functioning” and to hold inordinate stock in my level of “functioning.” What struck me during that retreat was not how “high-functioning” I am in my hyper-verbosity, but how variously functioned each of us is, in our human complexity. (And that goes for normies as well as auties.) What matters more than such measurables as IQ and “skill set” are self-awareness and ability--and willingness--to advocate for oneself. I have become friends with other autists in KindTree’s autism support group, which I have been attending for the past four years. This support group is the first one I have ever been able to stand, let alone derive any nourishment from, both during and between meetings. It is crucial to have a good facilitator, to keep discussion flowing. I find the camaraderie of a good support group crucial to coming to terms with any predicament or condition. Before KindTree, I had always craved community but become too disgusted and disillusioned with group dynamics (“politics” I called it) to swing it. KindTree not only tolerated my tweakiness but embraced me through my freakouts and shut downs. This was the first group of people who could work through conflict in a spirit of kind-hearted adventurousness. Through my involvement with KindTree, I landed various human-service joblets -- teaching beading to adults with developmental disabilities, conducting workshops for Voc. Rehab. clients, and working with kids and adults on the spectrum. Through helping these folks learn to accommodate their disabilities and to advocate for themselves, I started to learn to adminster to myself, as well. I started to see some of my indelible “character flaws” as faulty solutions to my cognitive and sensory scrambling. I am learning to apply my logic to these difficulties of mine. I had always wanted to be useful without being exploited and taken for granted, but got precious few strokes for my efforts until I got involved with KindTree and then the autism community. Part of this is that prior to KindTree, much of my time was focused on things that were next to impossible for me--my disabilities, as it were--not on my talents. My self-esteem was so eclipsed by these seemingly insurmountable shortcomings that I was hard-pressed to see any talent in myself. Since becoming involved in KindTree and in other reaches of the autism community, I have been learning how to work around my limitations and better exploit what abilities I do have. I am developing a cultural understanding of autism. (Personal stories about autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) coming to terms with autism When I was five, I vowed no longer to be autistic. My momentous decision took place in kindergarten, during the Christmas pageant. Though I was nonverbal at age 3, when the pediatrician advised my mother to institutionalize me and cut her losses, I must have fully understood what he was telling her well enough to be ashamed of the dreaded "a" word two years later. For the next forty years, my autism was a dirty secret I divulged, almost as a passing afterthought, to only my closest friends and, much later, to parents of newly diagnosed kids. People they told either said I was making it up, since I am not only verbal, but loquacious; or they felt vindicated in their suspicions that I really am a little off. Whenever I alluded to my autism, it was always in the past tense. That is not to say that I didn’t secretly devour what little I could dig up about my "former" condition, as a part of me must have known that autism doesn’t just evaporate. My third grade teacher must have known I was autistic, though. She tried to control my disruptive behavior by having her teacher’s pet reward my rare instances of "good" behavior with gifts of pom-pom birds. I resented her condescending special treatment, though I liked the birds. Horrid though my "bad" behavior must have been, I was not being rebellious; I couldn’t help it. I preferred my parents’ approach of punishing me. At least, they weren’t singling me out as defective. I did not know how most of my problems were due to the insidious pervasiveness of my autism. I erected work-arounds, which enabled me to snow my way through secondary school and college. Even though I crashed on jobs when forced to multi-task or shift attention too much, I somehow managed to keep enough people fooled to stay afloat until my mid 40s, when health problems tipped the precarious balance. It was about then that a local massage therapist, to whom I had confided my condition, told me about KindTree, and foisted me upon them. My involvement with KindTree forced me to come to terms with being chronically autistic. The following years have been a dialectic of coming to terms with this condition. In my own personal development I see parallels to the civil rights movements that have been unfolding in my lifetime. I see my long period of denial as my "Uncle Tom phase." When I started to "come out," I was afraid I’d have as little in common with other autists as with every other group. Having researched what I had seen as my "former" condition, I had an intelligent lay person’s grasp of it. However, actually meeting other autists for the first time, at KindTree’s 2000 Retreat, inspired and taught me way more. It was a spiritual experience. After a period of personally identifying with my condition, I segued into an even more obnoxious period of wanting to prove how relatively "high-functioning" I was for having conned the world into taking me for no more than an eccentric neurotic person. During high-functioning interludes, I would wonder whether my autism was "serious" enough even to count, and felt guilty for making such a big deal out of such a trivial condition. As I met more fellow autists and found out more about "my" condition, I then went into a blessedly brief "Black Power" phase of identifying almost exclusively with other autists--and nobody else. It took an unpleasant interaction with one or two of my "own kind" to realize that I am no more a product of this "group" as any other one. Meantime, as I became more involved in the autism community , my autistic shortcomings started to re-emerge with a vengeance: my freakouts; difficulty with planning, organizing and changing focus; face-blindness. I then knew I am not an inadvertently fraudulent autist. I am starting to grieve my autistic limitations--the painful dichotomy between my intelligence and talents and my functional limitations. I sometimes find myself desperately seeking some ancillary mental illness to blame my problems on. In more positive moments, I try to figure out ways to outsmart it. Mary-Minn Sirag
(Written by autists about living with autism. If you would like to see your musings on this page, please email Mary-Minn at sirag@mindspring.com.) A weird autistic sensorium by Mary-Minn Sirag - September, 2003 Every so often, I find myself whiffing the underside of my elbow and the back of my hand, checking in with my nose to make sure I don’t smell too off. Sometimes, I exhale heavily onto my hand, to make sure my breath isn’t too rank. I try to have at least some sweet smelling lotion on hand. At age 24, I got fired from a Baskin Robbins for subtly (I thought) rubbing my fingers against my under arm and sniffing them on a steamy summer day to make sure my deodorant was still working. I don’t remember my conclusion, just that I was fired shortly thereafter, for that plus a medley of other autistic faux-pas. I am presently marooned "between" protective scents. Like the glamour girl who cannot leave home without a full mask of makeup, I¹m feeling mighty naked. Today, I spent a good hour squeezing and pouring testers at a local health food in a vain and desperate quest for a hand lotion I had recently discovered but whose name I can’t remember. My holy grail is the security blanket of the perfect scent. This almost Platonic olfactory ideal has always been a moving target for me, especially after a recent illness, when my sense of smell skewed nastily into the greener reaches of the color wheel, which, unlike its painterly counterpart, turns out to have its complement in the innocent periwinkle reaches. My predilections have shifted from Chinese red (amber paste, Guerlain’s Mitsuko and Jicky, an elusive Italian perfume called Cobra) back to the innocent periwinkles of my early childhood (Elizabeth Arden¹s Blue Grass, Nina Ricci¹s l¹Air du Temps, Fleurs du Rocaille, a dime-store Muguet des Bois). My synesthesia envelopes every sense of mine. I even thank it for my orthographic and alphabetic knack. I wonder how many other autists are synesthetes. I can identify scores of classic perfumes by smell, even recall them in my imagination, decades after having smelled them. The coloristic and instrumental accompaniment supplied by my synesthetic imagination no doubt helps. I just wish I could extend these synesthesiae to procedures and other sequential information, faces, locations in space and other visual things, for which I am downright aphasic. Though we autists tend to share a concrete processing style, the foci of our apocryphally Rainman-ian eidetic memories differs from autist to autist as radically as from one "neuro-typical" person to the next. Though I cannot recognize a face until I have met or--even better--seen a picture of someone six or so times, there are entire symphonies and piano concertos that I can whistle from start to finish; likewise with scents and flavors, which I not only can recognize but conjure up in my head decades later. I process a perfume much as I do a symphony. Much as I love a good rose, not all comes up roses for this persnickety Nose of mine. For one, the smell of franchise fast-food not only nauseates me, but hangs around in my olfactory bulb for a good 24 hours, often perseverating into a crescendo of caustic migraines. Probably the most phobic smell--besides a plague-infested battlefield, perhaps--is the acrid stench of "buttered" popcorn at chain cinemas. I know a young girl with autism who is phobic of ketchup breath! The Japanese describe Americans as "butakusai", which means "stinking of butter". When I first learned this word, while working at a Japanese trading company in San Francisco, I felt validated that I’m not the only olfactory paranoiac out there! I have found ketchup breath, among other things quintessentially American, to be very "butakusai". All my senses are at least somewhat tweaky. It took me until the age of 12 or 13 years, for instance, to know when I was sick. I usually had to collapse in a faint or throw up in the middle of class--or freak out or melt down for no apparent reason. I don¹t think that this was entirely because I was sick so much of the time, though that might have been a contributing factor. I think there was no little sensory processing confusion going on in whatever part of the brain is supposed to alert the rest of the body of such an event. I remember several instances of somebody’s finally having figured out that I was sick, and what an "aha" experience this imparted to my fever enfeebled intellect, in retrospect. My passion for playing "the sleeping game" and my uncharacteristic indifference to chocolate, my all-time drug of choice, suddenly made sense to me. My mother tells me that I rarely cried as an infant, even when I was hungry. I spent my early infancy staring at the ceiling, whimpering softly when, as one of my mother’s friends ascertained, my stomach was hurting. (Lest you mothers wax too envious of mine’s good fortune at having begotten such a little angel, rest assured that my 18th month of such enviable babyhood ushered in a new apocalypse of either shrieking and throwing things, and rocking back and forth in a catatonic stupor.) My early indifference to food evolved into exquisite pickiness. I gagged on cereal and rice. I abhorred all spices besides salt and pepper. I was forced to overcome my pickiness about food by embracing an ever widening variety of foods, simply because I grew up in the Middle East, where mashed potatoes and homemade dumplings were hard to come by, and grains, which I have never liked, were even more central than they are in the States. (I still haven’t embraced grains wholeheartedly, partly, it turns out, because I can digest so few of them.) I was 12 years old before I’d touch rice--and then only the Basmati variety--or garlic. I remember being so phobic of garlic that my mother threatened to rub it on my fingers to deter me from devouring my nails and some of my fingertips, for added zest. I remember being particularly phobic of cilantro and coriander, and of cinnamon in any non-sweets’ context. Since proudly overcoming these phobias, I made all these ingredients into cornerstones of subsequent cooking obsessions. The same love-hate thing applies to other kinds of fear I have managed to conquer, such as swimming. I wonder whether the same holds true for neuro-typical folks. Onto music: A teenage friend of mine, who has Aspergers, shrieks, winces and plugs his ears desperately whenever he hears any female voice singing. I doubt very much this is a sexist prejudice, as this young man harbors no other aversion toward girls and women. Furthermore, I remember the sound of any female vocalist having the same effect on me through my teens, until I trained myself consciously to appreciate a wider variety of music. My prejudice was especially galling, since I had been inflicting my female singing voice since age one. My early music taste was overly refined. I would positively shrivel whenever I heard any note sung or played off-key, or the wrong note or rhythm sung or played. It affected me much as sirens, jackhammers and motorcycles do, bypassing my ear and going right into my pain center. It mattered naught that I probably was missing my vocal and harmonica aim more than occasionally! Just like my young friend, I would plug my ears forcefully and wince whenever anybody else messed up. In elementary school, I liked only the Beatles and Gilbert and Sullivan operettas, the latter probably only because I got to sing Yum Yum, Little Buttercup and Josephine. My only salvation from my claustrophobic narrowness was that I would periodically "burn out" "my" composers by over bingeing, which left me utterly devoid of salve for my music-parched spirit. These burn-outs forced me to venture forth into new territory. My middle-aged taste is much more varied, which provides insurance against finding myself marooned between musical binges. I
still have singers and composers I cannot stand, though, as does
any autist worth his or her salt. Barbra Streisand, Benjamin Britten
and Gregorian chants come to mind, though I am confident that
I am suppressing my awareness of whole other genres that propel
my finger to the "off" button of my many radios. The closest I
have come to liking Barbra is my deep appreciation for Patti Smith,
which though no ceegar is a start. When I can tolerate a whole
side of Funny Girl, I’ll know the time has come for me to
start imparting my sensory integra tion wisdom to other music-fussy
autists.
Our second Autism Forum took up where our last year’s first Autism Forum left off. (Please see Autism Community resource list here) The first panel, entitled "Post-Measure-28
Budget Cuts and Revenue Projects: Affects on the Autism Community"
was a rally cry to Margaret Theisen, the director
of Full Access Brokerage, explained how FAB was created
to provide services to adult clients whose wait- Lynn Greenwood, the director of
Lane Developmental Disability Services, said that the budget
cuts have increased case manager’s case Of the General Fund, 9.5 percent
goes to Lane County government, which hasn’t grown in the
past 20 years, despite large population increas- Kitty Piercy, a former state representative,
serves on the Lane County Commission of Children and Families,
and chairs the Oregon Commis- She urged her audience to pressure
Rep. Pat Farr, who is part of the Lane County delegation. He needs
more than just to "feel deeply," she County Commissioner Peter Sorenson
worked as a state senator with Kitty Piercy. In July, he said,
97 Lane County government workers will The second panel, entitled “New
Developments in Brain Research, Interventions and Behavioral Management
for Autism Spectrum Dr. Bove is a Eugene naturopath
who practices the DAN! protocol, allergy testing and chelation.
He has been practicing naturopathic medi- Dr. Leslie Carter is a Tigard-based
therapist who has done a lot of work in rehabilitation and
neuropsychology. She started out in pain man- Carter is on the diagnostic team
for the O.H.S.U.‘s secretin project. Her approach supplements
biomedical techniques. She finds bio-feed- She sees emotional dysregulation
as a root of the phobias and horror of surprises afflicting
autists. She cited Steve Gutstein as a new pioneer Benjamin Bell, L.M.T., performs
cranial sacral therapy, which aligns the skull plates in order
to help regulate the flow of cerebral-spinal flu- Rhonda Way teaches a weekly
sign language (modified American Sign Language) class at
Bridgeway House to kids in the autism spectrum The third panel, on “Dignity,
Self-Determination and Independence: How to Maintain During These
Uncertain Times”, was a rally for Cheryl Nel Applegate, a case worker
at Lane DDS, facilitates KindTree’s monthly autism support
group. She talked about the friendships Nan Lester, who started the Asperger
Counseling Northwest, talked about how the Coalition has
returned to being a support group for parents Pat Wigney, the director of Bridgeway
House, talked about Bridgeway’s mission to house a "trauma
team" for parents whose kids have just Tim Mueller of KindTree offered
to begin a discussion on how to create an autism network organization
here in Lane County. People were It was a great Forum. Look for it again next year! Mary-Minn
This is part of an ongoing series of articles written by people with autism spectrum disorder about our condition. Please submit your articles to me at sirag@mindspring.com Cognitive Work-Arounds by Mary-Minn Sirag - March, 2003 Two months ago, I took a nasty fall and shattered the tip of the radius of my right (dominant) wrist. Hefting about this painfully inert limb has pushed my brain to a new limit, propelling me on an inner journey into the nether reaches of my cognitive dis/abilities. Fortunately, my injury came about during the second year of writing with my left hand. This was well into a tectonic shift going on in my brain. Even before I started writing with my recessive hand, I was more ambidexterous than most. I started writing seriously with my left hand as a freelance reporter. My right hand would cramp up, and my brain would stiffen. I discovered in my left-hand writing a plainer--and more legible--handwriting with fewer knots, a handwriting that better reflected how I wanted to see myself and be seen. I prefer typing, especially on a computer keyboard, because type comes out neat. In order for me to be able to understand or even grok anything, I need visual coherence and neatness, both of which defy my right hand. It is next to impossible for me to stay within a page when I am penning something. Forms drive me crazy; the blank spaces are almost always too small to write in, the font choice ugly, and the visual layout nauseating and vertiginous. I learned (quickly, I was told) through newspapering how to lay out and paste up attractive and coherent news pages, which goes to show that my innate sense of design and composition are fine. Another reason I prefer typing is that my fast and accurate typing speed accommodate the capricious and erratic hemorrhaging and clotting of my thought process. Writing with my right brain, first in tandem with my right hand and now in solo, feels profoundly different from being restricted to my right hand. It is as though I am using my entire brain area, in a warm soft focus; whereas, my brain work from my solitary right hand felt clustered and constricted, and icy-hot. Operating almost wholly from my right brain makes verbal things even more frustrating now, though. I lose speech more frequently than before. I wonder whether an aspect of autistic cognitive difficulties and frustration stem from such a constricting clustering of brain function. Since I have switched hands, my drawing has improved, even without the Etch-A-Sketch, which was my entreé into drawing realistically. I draw more fluently, and am better able to capture what I see in front of me. My likenesses and design sense have improved dramatically. I am living proof that not all autists think in pictures. I have never been visual, at least not in any conventional sense. Though I need visual clues to help me sequence, I am not a visualizer. Being a synesthete, I perceive a redolent continuum of colors, smells, flavors, textures, and musical timbres and notes. I suffer what is called "facial propagnosia", which means that it takes me half a dozen meetings with a person to recognize his or her face. Though I am facile with alphabets, codes, spelling, grammars, and classification schemes such as botany, I find other kinds of rules, such as game rules and protocol, to be esoterically mysterious. I am indebted to my mother for my ability to recognize anything visual. An artist, she had me and my four siblings drawing still lifes and portraits from the time we could hold a pencil. It wasn’t until much later that I started to enjoy drawing , though. In the meantime, drawing has trained me to look at things. which helped me to build at least the basic rudiments of visual memory. I thank her for this. It still takes me a good half a dozen times to recognize people out of context--without their name tags, so to speak. Drawing has forced me to look at faces, though, giving me the glimmerings of hope that I can learn to recognize them sooner. Contrary to the smug proclamations of uninsightful people who blame my propagnosia on my solipsistic nature, my better-than-average memory for their stories, even their names, is evidence that my inability is neurological, not just laziness. What is strange is that it takes me no more than once or twice to recognize a fellow autist. In fact, my ability to remember a fellow autist is a good indicator to me that s/he cohabits the autism spectrum with me. Perhaps this phenomenon is analogous to how people of a different race often seem indistinguishable until one becomes familiar with that new race and its culture. Like many autists, I find myself quite crucified by transitions, especially those demanding punctuality. My idea of heaven is to float aimlessly between ever-sharpening hyperfocus and an opalescent vagueness. I find myself in a constant death match against real time. I detest the telephone and oral media, preferring the plush time flexibility of the printed world. Until I broke my arm, I was content to do most of my communication by writing, whereby I could corral people in my--and their--time frame, risking no real-time disruptions. Now, typing hurts and frustrates me, so communication is a real drag. Transitions are fertile time for freakouts for me. I find it close to impossible to get out of the house in one try, which is extremely frustrating. It generally takes me and my saintly-patient husband a seeming eternity to round up such personal and business effects as I need to carry out my day separated from the mother ship. At least daily, my truly wretched spatial and short-term memory maroon me in a scavenger hunt. No matter how hard I work at putting things in "their" own places, I too often find myself hard-pressed to remember where these places are, even five minutes later. I have yet to figure out how to get--and keep--my house neat enough to remember where I can access those things I need. Out of sight, out of mind. I shuffle and reshuffle my stuff endlessly, in hopes of getting it right, for once. I am working on an inventory-control system, whereby I can neatly jot down whenever and wherever I put something crucial. I try to wear whatever I estimate I’ll be needing. I attach my various keys to myself with hooks and coils. I strap my wallet across my chest in a small purse so that it cannot slip off my shoulder, into my Houdini hands, and out into the inchoate infinities of the vast no-zone. I clip my key coil onto my seatbelt, so as not to leave it in the ignition when I lock my car. Anything of mine which is not color-coded and clearly labeled tends to wander off taking with it a small part of my personal sanity. I love cargo pants. I think an autist must have invented them. One of my fellow peer mentors recently clued me in to building a launching pad, a visually coherent place next to the exit where I now station my various crucial things At most of the many clerical jobs I have held, I have found myself nauseated and shaky, just looking at the forms I need to fill out, what with their blocky fonts, tiny procrustean blank spaces for filling in things, and incoherent layout. If I last at a job long enough, I generally end up redesigning the paperwork to my absurdly high standards of visual coherence. My crib sheets usually become training manuals for new employees. My eccentric prosthetics have quartered the raining time of new employees at various jobs. Though my sequencing difficulties make me initially slow to incorporate procedure from the capricious flickerings of short-term memory into the elephantine realms of long-term memory, the trial by fire generally affords me a deep understanding of whatever I manage to corral. My patience with and compassion about other people’s learning curves make me a superb trainer and instructor once I’ve achieved this mastery. Needing an almost infinite regress of baby steps in order to complete a sequential process, I can empathize with and anticipate the baby steps that are generally omitted by other more facile teachers possessing undamaged sequential memory.
These are a few of my favorite stims by Mary-Minn Thunderstorms, especially
those that roll in out of a brilliant hot haze, rumbling barely
palpably € A sea squall on
board ship. Going on deck and smelling the ocean, perhaps playing
ping- € Going out on the
jetty during a storm. € Container ships being loaded at
the dock. € Standing € Jumping
off of high places. Operating a boom crane. € Cracking my
knuckles and joints.€ A € Power stations, especially older ones with large windows into the machine room. The Weyerhaeuser plant on Highway 126. A solitary grain elevator. € Certain oblong-curved arches grinning at me from old porches. € Fog horns and train horns in the fog. € The crackle-pop-ping of vetch pods on a hot summer day. The moiré of cricket crescendo in the summer. Tree frogs. Bull-frogs twanging. Owls hooting.
What Kind Tree means to one autist by Mary-Minn Sirag June, 2001 I discovered Kind Tree last summer, having confessed to my trusty massage therapist, Sharon Shaffer, that I have autism, in addition to all the aches and pains which she was malexing out of my corrugated fascia. She swiveled around her big chair and scribbled out a prescription of Tim’s name and number. Kind Tree has worked magic on my life since then. Heretofore, I had tried to conceal my autism--a larger part of me than I cared to admit--from all but trusted friends. This admission has been a breakthrough in many ways. Just last week, for instance, I got my self-employment plan as a back-book indexer approved by Voc Rehab. This will enable me eventually to work at something solitary, bookish and suitable to my peculiar temperament. Without Kind Tree, I would never have felt deserving of any kind of career assistance. By celebrating people with autism, Kind Tree empowers us. Two weeks after I met Tim, Steve, Michelle, Melissa and Nel, I was invited to Kind Tree’s Autism Retreat at Cedar Hill Retreat Center in Deadwood. The day was devoted to autistic silliness and camaraderie. The highlights for me were Tim’s echolalia microphone and the echopraxia rug game. Nothing like collaborative self-stim. What a special kindship I felt with the other people there! Kind Tree welcomed autumn’s majesty with Nel’s monthly support group at the Hilyard Center. This is the best support group. We all speak deep from the heart, respecting and supporting each other through our frustrations with and confusions about the neuro-normal world--no war stories or power politics here. One excellent session was an art session led by Ericka, who teaches a marketable art class. The annual Haunted House fund-raiser was another highlight. I was echolalia emcee one night on Tim’s trusty mic, my Transylvanian persona cackling at Melissa’s blood curdling shrieks as her sadistic butcher decapitated her, all to Tim’s daughter Miranda’s chilling soundtrack. Roz De Roos organized an inspiring talent show at L.C.C. in January. Magical was the quality of the acts and the rapport between the performers and the audience. A few weeks later, we hung an autistic art show in the Unitarian Church's Inner Space gallery. Kind Tree honored the artists with an art opening. It is very special to see people admiring our art, and to mingle with non-autists and other autists. Many of my fellow Unitarians told me they were impressed with the talent and moved by Tim’s short bios accompanying the pieces. It was an easy way for me to "come out" as an autist and to show the neuro-normal world that we are not just head-bashing freaks. We at Kind Tree look toward the summer and even our future with some melancholy, though. Our cash box is depleted, which puts our programs in jeopardy. We haven't the cash to rent the Hilyard Center for our support group, though I and the other autists and aspergers want it to continue through the summer. An enthusiastic therapist, Jean-Marie Moore, has even volunteered to pinch-hit for Nel in June and August. Our lack of money compels us to meet on the lawn outside the Hilyard Center, which is not private or quiet enough for most of us to talk without reserve. We may have to start charging people in the support group, which may discourage less prosperous autists. We ask any of you who can afford to make a contribution to Kind Tree to do so. Any amount would be appreciated. Money has a way of attracting its own kin. A critical mass has been known even to sprout its own progeny of coins and notes for the worthiest purposes. It just asks some forward-thinking bank notes to stand up and be counted! Autism Research Report, December 2000 Dear Kind Tree folks,
1. The first multiple-choice
test was called the Autism Spectrum Quotient (AQ). This test,
which quantifies the autism spectrum, has
both clinical and research uses. Clinically, it helps to screen
adults with high-functioning autism or Asperger's Syndrome. For
research, it is useful for looking at how
people differ at different points along the autism spectrum. The
questionnaire has also added evidence
to the very notion that there is a continuum of autism conditions.
The results of the AQ study will appear in the 2. The second test, the
Cambridge Behavior Scale, measured Empathy Quotient (EQ). Autism
is often described as an empathy disorder.
And indeed, scores on the questionnaire indicated that people
with Asperger's or high-functioning autism appear to be
less empathic than people without these
conditions. We are currently investigating the very concept of
empathy further. The result 4. Folk physics and folk
psychology 5. "Reading the
Mind in the Eyes" Test 6. Newborn babies
7. The amygdala
theory of autism and brain scanning 8. Autism and
Tourette Syndrome 9. Testosterone and social
communication 10. New research
For more
information, contact Sally Wheelwright, Research Coordinator.
Email: s.wheelwright@iop.kcl.ac.uk
I am basically a textbook
autist. A stoical and aloof baby, I lost speech and regressed
at about 18 months. I was diagnosed when I was a little over 2.
When I was 3-1/2, my IQ was measured on several tests at 68. I
sat up when I was almost two, learned to walk when I was about
4, and started to sputter words at 4-1/2 years. Mary-Minn Sirag is a Kind Tree Board Member and free lance journalist.
|
2096 1/2 Arthur St, Eugene, OR 97405 |
541.521.7208 |