Thanks for visiting a KindTree Productions, Inc Page

 

Mary-Minn's Stim Pages, 2000 - 2011

 

A collection of Mary-Minn Sirag's essays as they appear in KindTree - Autism Rocks' newsletter,
Reaching Out - Reaching In

 
KindTree President, Mary-Minn Sirag
 Escape from self injury
March 2011
 
July 2011
 
October 2011
 School Daze
March 2010
 The substance of my memories and dreams
July 2010
 Who am I?
October 2010
 Blissed out with no place to go
March 2009
 Show Off
June 2009
 Why I'm not autistic
October 2009
  On poignancy
March, 2008
 A Voyage to Bend
June, 2008
 Adolescence: It May Come Late,
But You Can't Escape
October, 2008
 Hard-Knocks Social Stories
March, 2007
Behind the Wheel
October 2007
 On the Illusion of Leadership
March, 2006

 The Anatomy of a Freakout
June, 2006

 Workin' for a livin'
October, 2006

 Autism is a Special Interest Now
March, 2005

 Autistic Pride Day
June, 2005

 The nonverbal “language” of obsessions
September, 2005

 coming to terms with autism
March, 2004
 Developing a cultural understanding
of autism.
June, 2004

 Cognitive Work-Arounds
March, 2003

 Autism Forum Summary
June, 2003
 A weird autistic sensorium
September, 2003

 These are a few of my favorite stims
March, 2002

  What Kind Tree means to one autist
June, 2001
 On Living With Autism
October 2000
 Autism Research Report
December 2000

 

Escape from self-injury, March 2011

Last 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.
She was able to get me into kindergarten. The teacher was interested in working with students who had special needs; otherwise, I most likely wouldn’t have been admitted. I think my academic success had a lot to do with the small size of the classes, from the time I was in elementary school through college. When I was a kid, I got individualized attention, even though IEPs did not exist back then. However, I was not singled out as disabled, as I probably would be if I were in school now. Instead I was treated by the same standards as my neuronormal peers. I resented my well-intentioned and probably kind-hearted third-grade teacher who bribed me with pom-pom birds whenever I had gone through a week or so without having “fits”, as they were called back then. I preferred being spanked for misbehaving to being singled out for more lenient treatment because of my disability. I so wanted to be seen and treated as “normal”, not marginalized.
There existed no records of autistic children having recovered from their autism enough to learn to talk and play with other kids. Perhaps this was because the diagnosis was so new that there was no history of prognosis. 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. In my deepest heart, I knew these troubles stemmed from my autism; I just had to keep on making sure no one else saw this.
To the precious few in whom I confided about my autism, I referred to it in the past tense; it was always “I was autistic,” rather than “I am autistic”. My confidants either thought that I was making it all up, that had I been truly autistic, I wouldn’t be talking to them about it; that my autism explained my every character flaw and annoying trait; in the worst case of all, that I was using my autism as an excuse.
From the time I was in 7th grade, I devoured every book about abnormal psychology that I could lay hands on. To no avail, I sought descriptions of myself in Freud, Jung and, later, even B.F. Skinner and the Behaviorists. Schizophrenia was the closest I could come to my condition, and that was no cigar. I romanticized mental illness because I felt more mentally ill than neuronormal.
School was difficult for me but I worked so hard at it, and my vocabulary and grammar were good enough to pass for smarter than I was, that I was reasonably successful, graduating from college with a 3.45 GPA. Having graduated, I visited my elementary school teacher to thank her for being so helpful and patient with me. I asked my grandmother what I could do to repay her for devoting 3-1/2 years of difficult work getting me to walk up stairs, to talk, and to ask for things rather than snatching them or grunting She replied that I could help someone else struggling with autism. I didn’t know how to go about doing this except by telling my story. Much as I wanted to help fellow “sufferers” in a more direct way, I lacked the perspective on my own condition, let alone how to go about helping them with theirs.
Having graduated from college and needing to work full-time for longer than a few summer months, I thrashed around from one career to another, quitting or getting fired, finding my every job meaningless and unspeakably difficult.
In 1987, my future husband and I visited the University of Iowa. We were able to meet with Dr. Jennings, one of the younger psychiatrists working on the early autism study. He mailed me some of my records, which made things clearer for me.
In 1989, I read an article by Oliver Sacks about Temple Grandin, the first verbal autistic person I’d ever read about. In her struggles and coping techniques, I saw parallels to my own life. I read Donna Williams’ Nobody Nowhere, and felt vindicated that I was autistic, not just lazy and self-indulgent. I thought my own story was, in its own way, as triumphant and interesting as theirs, so I submitted a story about my life to Redbook magazine. It was rejected. I think they turned it down because it was boringly written and conceited in tone. At least, the rejection letter was not generically written. I was disappointed but also relieved. I was not ready yet to go public. Back then, I wanted to be famous, but I didn’t want to be famous just for being disabled.
The autistic literature became more plentiful in the ‘90s. I read books that were self-promoting, such as Barry Kauffman’s Son Rise; inspiring stories such as Dibs in Search of Self by Virginia Axline; neurological articles in Science News about atrophied cerebella and bad coordination, amygdala differences that exaggerated flight-or-fight responses. I still kept mum about my condition, though.
In 1996, I heard that the son of one of my co-workers had just been diagnosed with autism. I didn’t know her very well but was conceited enough to think that telling her that I am autistic would reassure her that perhaps her son might grow up to live a normal life--that he might live on his own, get married, and whatnot. Her mouth became o-shaped, she took a deep breath, her head pulled back, and she did a double take. Everything contradictory about me came together for her. She had always thought I was “different”; now she knew why. Though I swore her to secrecy, I am pretty sure the secrecy was too much for her to contain. Shortly after that, my supervisor, whom I didn’t get along with, asked me why I was reading Temple Grandin’s Thinking In Pictures. I told her, probably less than convincingly, that I was interested in consciousness and the mind. I got fired a few months later. I think that divulging my autism did not help me hold on to that job.
I gradually became more open about my autism. I started out by telling alternative practitioners such as massage therapists about it. Besides my husband and my grandparents, these practitioners were the first sympathetic people. My vanity felt gratified when they showed amazement that I was, in so many words, so high-functioning. I told my best friends about it; some thought I was exaggerating, even making excuses for having such a hard time on the job. That ended one friendship for me.
In 2000, a massage therapist introduced me to KindTree. I was not willing to reach out by myself. What if they thought I wasn’t autistic enough? I still thought that autism comes in degrees, that it is possible to be less autistic or more autistic. I hit it off immediately with the KindTree folks. I was surprised that they didn’t question my autism. I didn’t realize back then how blatantly autistic my mannerisms really are or how accepting and non-labeling they are.
The board of KindTree invited me to talk at their upcoming Autism Retreat at Cedar Hill Retreat Center in Deadwood. I was terrified of talking to a group but thought that I could perhaps be a positive example for people on the spectrum and people with kids on the spectrum. Even though my presentation was halting, hesitant and stuttering, people were interested in my story. I met fellow autistics across the autism spectrum and saw traits and mannerisms in common. People on the spectrum are as different from each other as people across the neuronormal spectrum or across racial and cultural lines. There is a cultural similarity, an autistic “vibe” that makes us recognizable to each other, even if it’s not recognizable to people unfamiliar with autism.
I came out as autistic with the moral support from KindTree people and my husband. Otherwise, I would have felt too vulnerable and exposed. I started out in my self-discovery and disclosure by comparing my high level of functioning with others’. Though I was terrified of public speaking, I loved the opportunity to “inspire” others with my story. I didn’t understand yet how every autistic person is high functioning in some areas and low functioning in others. This is true with everyone to some extent but a defining characteristic of autism. Just because someone speaks in a singsong doesn’t mean that they can’t drive a car or program computers. Someone can be socially adroit but unable to ask someone to do something. Someone can have a hard time processing oral information but be an excellent writer.
I knew that autism is a lifelong condition but, all the same, wanted to make sure I wasn’t using it as excuse, as a friend of mine had accused me of doing. I became obsessed with the diagnosis and how I fit into it. I read up on it. My talks, with all their bullet points of diagnostic traits, facile jargon and recommended interventions, must have been boring.
In this period, I found myself identifying almost solely with my diagnosis, inadvertently acting it out almost self-indulgently. I talked about little else but my autism. My life had gone from ignoring and denying an important part of myself to ignoring and denying just about everything else about me.
Meantime, I saw in other people’s generalizations about autism traits that I didn’t see in myself: the nerdy and computer-savvy stereotype, the inveterate loner who doesn’t socialize well, the person who thinks in pictures and not in words.
I started to compare myself to the others. I felt like a dilettante, rather than the single-minded genius that others associate with being autistic. I felt a bit lost with respect to my identity. At this point, I didn’t want to return to being a defective neuronormal person.
Meantime, my career had evolved to working with people with disabilities as a teacher and service provider rather than working around people only as colleague and customer service provider. True, a few of my co-workers became lifelong friends of mine, but there were as many co-workers who found me annoying. I had always known that, like most people, I worked best with the people I was serving and had the hardest time with co-workers and, especially, supervisors. I thought I was unique in finding supervisors and co-workers more difficult than customers.
Working with people with disabilities gave me a perspective onto my own disabilities and abilities. Seeing guests arrive at our retreats looking anxious and autistic and then seeing them having fun at our retreat, I noticed that the line between autistic and non-autistic started to blur. Perhaps this is partly because parents are often somewhere on the spectrum, but I think it’s mostly because a person’s diagnosis fades away as one gets to know and become fond of that person.
I never got into much of an “us” and “them” mentality, between autistic and neuronormals. I think this is because I still spend most of my time with non-autistic people, on the KindTree board and in my various joblets.
For the past few years, I have been fully convinced that I am autistic, so I don’t need to castigate myself for making autistic faux pas. I don’t feel like an autism expert but rather an autistic individual. Mary-Minn Sirag


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.
By the time I was attending kindergarten, I had mastered speech and my memories become more frequent. Though I didn’t learn to talk until I was almost 5, my consciousness after then must have been verbal, for my memories became more frequent and clearer, probably because they had more context to latch onto.

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.
My dreams come in series. Each episode is plopped, as it were, into existing architectural and situational templates, the color schemes and atmospherics evolving over time, gradually mutating into new series.

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.

“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”

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.
I don’t remember whether I discovered the comfort of rocking during this trip across the Atlantic, which was to be a high point in my life, or whether I had discovered it before our transatlantic voyage.

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.

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. ”


I had just moved to Lebanon and, for the first time, was exposed to a large assortment of foreign languages. The elaborate fake-German name I had given Ehre Der Voyjsh Der Vinn was testimony to my devotion to her.

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.
When I could find no one with whom to discuss “philosophy” in my fake-German (my father was a philosophy professor and I loved the grandiose vocabulary), I contented myself with my own nonsense polemics. The longer these two- or one-way conversations lasted, the more intoxicated I became. My siblings and I spoke English in a Lebanese accent with our Lebanese friends, which, doubtless, did their English no favors. Unlike the French, we reveled in English scented by foreign-accents, grammatical flips and roundabout locutions.

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.


During the summer leading up to 7th grade, Mellie’s family moved to Athens, abandoning me to the onset of other kids’ puberty and the confusing psychedelic 60’s. My acting ability lay fallow.
I resumed my short acting career in 11th grade, but it was never quite the same. I found myself typecast as the crazy old hag or the neurotic middle-aged woman, roles that matched my personality too closely to be challenging for me. At least, my hours in front of the mirror weren’t for naught.

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 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.”


My neighbor revs up his Harley. My central nervous system does not bristle up from the inside from the shattering low overtones, which pleasantly surprises me. I can’t believe it!

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.)

“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 ”

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.



“She mistook my weirdness for experience with psychedelics. Once she discovered I was just weird, she dropped me. ”


I owned a large and eclectic collection of Olofs: a miniature psychedelic-hued pencil-top model with typewriter-eraser hair, a set of twins conjoined at the ear, a horse, a Dodo bird, an elephant, as well as the standard Olof with bright-colored hair shooting out of its head. I was especially fascinated by my twins, one sporting salt-and-pepper hair and the other, a cool crimson mane. I gave all my Olofs “Scandinavian-sounding” names. Living in Lebanon, I was exposed to the sound of many foreign languages, so I invented fake-foreign languages, in which I conversed fluently with unsuspecting victims for half-hours at a time.

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.
My two younger brothers and I got off to a rocky start. That first year, they were beaten up a lot. Though I never got beaten up physically, some of my teammates in P.E. threatened to “whip my ass” in the parking lot because I was such a liability to the team. Meantime, the sinewy P.E. teacher chain-smoked from the sidelines, occasionally admonishing us, “Come on, 10th grade, let’s go.” The harder I tried to volley, the more enticing a victim I became. The jock team captains chose their teams, and I was always the very last chosen, even after Esther, who was about 300 lb and a “little slow”. I took full advantage of my hemorrhagic periods and whatever minor infirmities presented themselves to skunk out of P.E. I secretly envied the girl with heart trouble who had to sit out P.E.!

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.
When I was 16, I got my first job, at an old-fashioned general store across the street from our house. My questionable work ethic was spurred by a desperate desire to get out of the house. I hung out with my friend Cathi, who entertained me with yarns about her recent sexploits. She and I would head down to the river on a hot day to skinny dip, in hopes of enticing some cute neighborhood boys who went down there to get smashed on Colt 45 and Boone’s Farm Strawberry Hill. We all got drunk competing for the distinction of being able to outdrink each other without passing out or throwing up. Cathi and I reigned triumphant and were rewarded with the opportunity to play Florence Nightingale to these vomitorious drunks. That was before hangovers kept me honest.

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. ”


When I was 11, my family and I sailed on The Bawean, a Dutch freighter from Suez to Montreal–up the Suez Canal, along the coast of North Africa, through the Strait of Gibraltar, across the Atlantic, and up the St. Laurence River to Montreal. On that trusty vessel, we watched The Counterfeit Traitor, about the French Resistance smuggling Jews into Switzerland during WWII.


Though my memory for movies is usually so flittery that I can watch the same movie several times from completely different perspectives in a single year, scenes from The Counterfeit Traitor etched themselves indelibly in my memory: A pallid but beautiful young woman is coughing sepulchrally from tuberculosis. A large hand shoves a napkin into her mouth to muffle the noise. She is packed into a burlap bag, which is shoved onto a small motorboat, headed for Switzerland.…An ancient–in retrospect, middle-aged–woman confesses to a priest behind a confessional. The woman’s head, swaddled in a scarf, is seen from the back. The priest’s face is unrecognizable, for the dim lighting. The very next frame shows the vaulted ceiling crashing down to a bomb blast. Dust is flying; worshippers are collapsing on the floor, moaning and shrieking in mortal terror. By implication, many are killed instantly by the blast, though the viewer is spared the graphic carnage. The bomb’s din bores a hole into my brain, bypassing my overly sensitive ears.

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.
In Beit Meri was a seedy cinema called Le Capitole, which reeked of stale garlic and urine, but was my sibs’ and my mainstay of structured entertainment during those languid summers. I just daubed my nose with perfume whenever I took in a movie. (My sibs and I avoided “the facilities”.)

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.


"I see my driving experiences as a parable about living with autism.. ”


My family had just moved to Maryland from Lebanon, where my brothers and I attended an American prep school that prided itself in being international, though it was in actuality xenophobically American. Though moving back to the States was a culture shock for my brothers and me, I found Brunswick High more laid-back, especially socially.

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 driving part of drivers ed provided him with a stellar opportunity to wreak vengeance on me. Most of the driving took place in the school parking lot. Physical obstacles were replaced by Day-Glo red cones. Whereas most of my fellow students had been driving their parents’ car with their parents or driving tractors, I had driven nothing but bicycles.

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!! /
Or print the sign up form HERE

Or Donate to support...


 

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
standing amid the wet new varnish with sticky footprints marking my path. That was the last time she would let me talk to her.”


In my freshman year of college, I obliviously carried no money on my person, unconsciously expecting by default for someone else to pay my way. I was up late one night enjoying the company of my theater buddies when we all decided to drive to Chicago for some deep-dish pizza in Old town. The college was in eastern Iowa. My friend Ron drove his car, paid for the gas and even my large portion of pizza. I jabbered pretentious improvisational poetry all the way to and fro, three or so hours each way. We got back to school at 7 a.m., just in time for breakfast and our 8-o’clock classes.

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 Sirag


 

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.)

Workin' for a Livin'

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.

The pinnacle of my career that year was waiting tables at the Veracruz Spanish and Mexican restaurant, down the street from the U.N. It was a mighty soft gig for the maladroit waitress that I was. I’d show up at a leisurely 10:30 a.m., when I and my counterpart, a chivalrous Mexican man, would set to work scouring the bathrooms and setting up our stations before getting to the paid work of waiting tables. Our choice clientele of U.N. diplomats were pleasant, interesting to talk to, easy to wait on, and generous with their tips.

"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. "


At the end of our shift, we employees would be treated to a substantial and delicious Spanish and/or Mexican dinner, com-plete with potent and flavorful margaritas. No matter that I was paid a mingey $3 a day, for which I signed the back of a check; no matter that I was forbidden to look at the front of the check, which probably was written for a significantly larger amount. Wages were merely a maraschino cherry perched precariously atop the proverbial ice-cream sundae, as I made as much in tips during those three hours as I would have been paid as a full-time filing clerk in the dingy recesses of Wall Street or a proofreader for an uptight fashion magazine in midtown.

About three weeks into my employment, my fellow waiter mysteriously failed to show up for work, but I managed to get my friend hired in his stead. She was an elegant Iranian woman with patrician manners, in stark contrast to scrawny, tweaky, fash-ion-dork me. My boss was clearly impressed by her. She refused to clean toilets; my boss reassured her that I could take up her slack, no problem. I objected strenuously. I was not above cleaning toilets, but it was the “principle” of having to show up a half-hour early to do a junior co-worker’s “dirty work.”

The following Monday, our entire kitchen staff had vanished from the face of the kitchen. The I.N.S. had deported the lot of them, as had probably befallen the waiter. That Monday turned out to be the busiest day I had ever experienced at that establishment. The line was 20 or so people long. Food was a long time coming, as my boss was ill-equipped to keep up with such a barrage of orders by himself. I reassured my patient cus-tomers that there was a slight problem in the kitchen, that I hadn’t forgotten their order. As usual, they were patient and kind with me.
When the food was finally ready, my supervisor brought it to them with a magnanimous flourish and yelled at me in front of the whole dining room for being so slow on the uptake. I shrieked back at him, again in full view and earshot of the entire din-ing room, that the food had been delayed because we were without a kitchen staff, and not due to any slowness of mine. I added that he should consider hiring people with legal visas next time, even if he had to pay them minimum wage. I was fired the next day for insubordination.

It wasn’t the first or the last job from which I was fired, for one reason or other. Back then, employment was easy-come-easy-go. I canvassed door-to-door for work rather than bothering with the voluminous classifieds and employment agencies, with their nitpicking requirements for shorthand, which I had never studied, and for fast and accurate typing, which I wasn’t to master until the corrasable IBM Selectric II erased my terror of typos and Liquid Paper.

Within a week, I was working retail at a small “chocolatier” deceptively named “The Chocolate Factory” on Canal Street, back then a sleazy no-zone between the Bowery and Wall Street. The boss was a questionable fellow named Alan Silver, whom I renamed “Alan Silverfish.”
We employees shared a delirious, delicious and well-deserved contempt for the Silverfish, but I was the only one with the “guts” to call him that to his face, as though my vocal disapproval could reform him, thereby making the world a friendlier and safer microcosm. Self-righteous “honesty”, above all, was a guiding principle for me back then.

The Silverfish pretended to be a chocolatier, rather than the mere purveyor of low-grade chocolate he was. To prove his nonexistent culinary expertise, he had placed a small saucepan with some somewhat dusty melted Hersheys atop a hot plate in a small closet at the back of the store. In reality, the chocolate he sold was imported, from across the Hudson River–Brooklyn, to be exact. We were instructed to tear down the chocolate boxes so that nobody could see their origin. Whenever we needed something that our Brooklyn supplier didn’t carry, the Silverfish would send Claire, the prettiest and calmest among us, to trade shows under an independent guise, as none of the other chocolate suppliers would have any financial dealings with Mr. Silver. Claire must have been one smooth talker to get into those trade shows without a wholesalers’ license.

I took great pride in my ability to estimate weight precisely to the ounce. Seeing this, my boss ordered me to overweigh by a quarter pound, so as to sell more chocolate than the customer had ordered. Sure enough, most customers didn’t notice the slightly larger quantity I had “misweighed,” but it chafed at my autistic love of precision.

New York City was still recovering from a long garbage strike. “No spitting” signs adorned the streets and subway stations, and for good reason. When chocolate fell on the floor, we were instructed to dust it off and put it back in the case. 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.

The store had a basement and sub-basement out of an early Stephen King novel, inhabited by tomcat-sized rats with sharp incisors and eyes that flashed red when the lighting was just dingy enough. Claire and I were charged with penetrating these sub-terranean reaches to retrieve the second-hand heart-shaped boxes festooned with battle-fatigued ribbons. Those hastily assembled, ratty boxes were just another of love’s cruelties.

Every so often, Mr. Silver exhibited great generosity by sending me out to an excellent little Chinese deli to fetch low-mein for his crew. Those evenings, my till would come out $20 or so short, which was a prodigious shortfall, considering that the average purchase was $3.
A few days after a hectic Valentines Day, I gave notice to my boss. Shocked that I not only had shown up for work that day but had given him notice, Silverfish gave me a severance bonus, plus a bag of chocolates. The bonus added up to the amounts he had deducted from my pay for “over rings.” And so, it was my turn to be shocked.

Mary-Minn Sirag

 


The anatomy of a freakout

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. "


My brain receptors had become immune to the antidepressant I was taking, rendering it useless. I felt too delicate to embark on yet another series of biochemical experiments before hitting on another antidepressant that would hold me until the next crash. Putting this off was my first big mistake.

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.
My first serious obstacle was that relaxation is a state of being that is every bit as elusive to me as spiritual enlightenment. My second obstacle was my extreme defensiveness about opening my being to my traumas. Though I can ruminate about them endlessly, voluntarily re-experiencing them in a therapeutic context is a whole other matter. My third obstacle was my innate suspicion of professionals, even when I’m giving it my college best to be open-minded.
During the sessions, however hard I tried to revisit these traumas of mine, my attention settled instead on comforting stimuli–the reassuring tock of a mechanical clock, the bells at St. Mary’s Episcopal Church that reminded me of church bells in the village of my childhood, the warming click of the baseboard heater, even a bus changing gears, so reminiscent of cross-country Greyhound bus trips I took during college. My therapist was astonished at how many mechanical sounds I took refuge in. She clearly wasn’t the John Cage fan that I am. Meanwhile, the trauma I was trying so hard to reframe evaded my conscious grasp.

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?

True, I had freakouts, but only when things got out of control. Granted, I have always been burdened by a stratospheric standard of “control.” Nonetheless, all I needed to do was to front-load complex tasks so as not to set my “team” up to fail by piling on too much at the last moment. It was a matter of logistics.

"My frequent brushes with failure in group activities had been due almost invariably to others’ unenlightened leadership,
or so I thought."


I had written procedure and training manuals, and designed elaborate work-flow systems as a paranoid precaution against the chaos and error rate that led to so much blame and dissension within those harried ranks I was inhabiting.
In the meantime, I had avoided positions of genuine leadership. Resisting a painfully intense reproductive urge, I had chosen to forgo starting a family, for fear of finding myself unable to provide for them financially or to survive the poverty that my unremark-able wage-earning ability might impose on my hapless offspring. I had felt righteously responsible in my decision rather than fearful, as I truly was.
I had turned down one or two opportunities for minor promotions on the job–out of modesty, I told myself. I had avoided com-mittees for supposedly esthetic reasons. The word “committee” was not euphonious to me.
My frequent brushes with failure in group activities had been due almost invariably to others’ unenlightened leadership, or so I thought. Back then, I could have written books on leadership, because I felt omniscient about what bad leadership looked like from my enlightened perspective.
It is a cliché that the hardest lessons come from having one’s own deepest wishes fulfilled. I have learned that if I want some-thing badly enough, it will come to pass eventually. Applied effort coupled with intense desire will bring about just any desired out-come, I have found. Like just about everything, this is a double-edged sword.
Ever since college, I wanted to repay a debt to my grandmother for her brilliantly intuitive early intervention, which had saved me from The Institution, where they put autistic children like myself back in the ‘50’s. I knew not how I was going to repay this debt, but serving the autism community remained an inchoate ambition of mine, even as I was posing as neuronormal.
Meantime, my deluded bubble of thought and action started to crumble in my late 40’s, as I started to look my age, and my matu-rity lagged behind my fading youthfulness and alleged promise. I had less and less use for anger and hard feelings, as both had stopped fueling me back in my 20’s. My chutzpah started to give way to an uneasy surrender to uncertainty and responsibility for what had gone wrong.
Meantime, more and more had been written about autism, which gave me new courage to embark on the long process of coming to terms with its profound implications. Light bulbs blew out and then were replaced and screwed back into luminescence as I found names for what had hampered me in my many aborted leadership attempts. I started to recognize my critical lack of “joint attention” in group situations: my flouncing out of a meeting during my senior year of high school because the teacher leading our group had wanted the play our committee was writing to be more serious and less “satirical”; my inability to keep focused and calm during meet-ings without sketching frantically.
My “brilliance” with imposing work flow on my co-workers became manifestly a desire to keep things autistically regulated. I had been dogmatic about my methodology, as it was the only way I could navigate complex projects. After a while, I would drive my supervisors nuts, which would crescendo us into snarly beak clashings. Eventually, they got the better of me–alas and not alas!–and off with my head in that particular context.
Back to square one, the want ads, and my subsequent agonies finding work conventional enough to pay my keep.
Meantime, a local eclectic and intuitive massage therapist threw me into KindTree. Leadership opportunities opened up, for the first time ever and quite by surprise. I suddenly felt unworthy as any kind of leader. At the same time, I acquired minor leadership po-sitions in my various joblets, and found myself daunted by the responsibility and the terror of making critical mistakes.
Starting to recognize how one-dimensional and slow my brain processing really is, I started to ask for help with my sudden over-loads, internal shutdowns and jarring panic attacks that continue to stalk me. Leadership now is more like being buoyed by my com-rades than marching ahead of the troops fearlessly.
Trying to lead with my gaping holes in executive function deficits suggests a big question: is it even possible?
I function much better as a task-oriented work horse. As in: Detail oriented. Friendly and sociable. Strong sense of fairness. Col-laborative. Honest. (Not to be confused with: Thinks well on nimble cat feet. Shrewd. Independent. Big-picture person. Ambitious but cautious. Quick study. The strong, silent type.)
What expertise I have is strictly preventive, for mitigating and minimizing real-time problem-solving situations, during which I freeze or explode.
After being expelled by the job market, I took refuge in KindTree, which became my role model as well as safe haven and an im-mense “skill set” from which to draw. I observe and work alongside experienced and talented leaders, hoping to absorb some of their wisdom in action. It has taken me a while to catch on to how much kinder this field is than were the mercenary trades where I spent too many years. Had I only known this, I would have come out much sooner with my autism.

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
Obsessive-compulsive disorder often accompanies autism. The benign OCD that I “suffer from” has taken on different forms, most of them downright soothing, except for my almost unslakable need to process certain inter-personal things to death.

I don’t remember having any disabling repetitive rituals, just strange obsessions and compulsions, which have evolved over the years. As I all-too-slowly matured, I learned to talk myself out of some of the more self-de-feating ones by labeling them out of existence.

When I was five or six, I became obsessed with infinity. I lay awake trying to bisect the–infinite, I had been told–universe. Perhaps this infinity of mine was inspired by the immense Iowa sky. I remember trying in vain to render the bisecting blade long or wide enough to touch the edges, of the edgeless infinity in my imagination. I hadn’t read Poe’s “The Pit and the Pendulum,” but my own blade presaged my later reading about his. Both blades cut chilling figures in my imagination, like the razor blade cutting the eyeball in the opening scene of Dali and Buñuel’s film, The Andalusian Dog (which image was to obsess me in college).

"My compulsions slowly evolved into strange mental obsessions."


At age seven, after I moved to Lebanon with my family, I acquired a “demon” who prompted me to do cer-tain phobic things, such as sniffing vomit, touching something disgusting or saying something obviously inoppor-tune, even cruel. This demon of mine was a phobic compulsion, not a religious apparition. I knew it was a silly figment, but it took me almost a decade to shake my compulsion to follow its tyrannical directives.

In 8th grade, my demon compelled me to tattle on my science class. (That was the only time that I can re-member tattling, ever.) Our class was having a party. I even enjoyed parties, if for no other reason than the treats and the reprieve from the academic grind. The principal stopped in and asked us what was going on. He seemed to want the reassurance of a white lie, not a confession of such a petty misdemeanor. Nonetheless, I felt compelled against my will to tell him. Regulations forced him to forbid it. He seemed pained to lower the boom. Though I already had become the outcast I was to remain through tenth grade, my tattling served no purpose whatsoever; perhaps it was a perverse pang of over-wrought autistic conscience.

Throughout my childhood, I was fixated on heights and flying. I jumped into gravel and sand pits, even off of small cliffs. I sprained my ankle once from jumping into a gravel pit, but was too embarrassed and afraid of get-ting in trouble to divulge my foolish accident to a soul. However, I did not enjoy jumping from one high place to another for fear of falling. I needed to time my freefall.
My compulsions slowly evolved into strange mental obsessions.

Through my teen years, images of animals or weird associations attached themselves to certain people I knew. I remember convulsing in uncontrollable and inappropriate laughter for hours over these private jokes of mine. Later on, I started to feel guilty about my cheap thrills at the expense of these people, so I trained my mind to stop amusing itself in this way. I think my moralism had everything to do with my autism.

In about ninth grade, I learned about the Law of Conservation. Living in dread of misfortune, I replaced mat-ter and energy with good luck and bad luck. In my interpretation of this Law, a run of good luck would be fol-lowed by an equal run of bad luck. Value could be quantified in intensity or duration, so one extremely propitious event–say–could be followed by a longer run of mediocre bad luck. The runs had to be equivalent in what I (mathematically inaccurately) dubbed “absolute value,” which was a Heisenberg-ish duality of duration and inten-sity. Life comprised a karmic succession of runs. I came to dread good luck, because it would be followed by an equally valued run of bad luck. Many years later, I explained this to the man who later became my husband. He compared my notion to gambler’s ruin, which very name emancipated me from the bond of this odious obsession. Names are potent talismans. I abhor euphemism partly because it emasculates the magic of language.

In college I treasured–and still do–a couple of nifty esthetic fixations: on desolate industrial areas, steam power-generating plants with immense colorful piping, engine rooms, commercial shipyards, trains going under bridges, and grain elevators, especially those that rise up out of nowhere on flat prairie. These fill me with the same kind of crown-tingling awe as do the Grand Canyon or the Parthenon.

I love to walk around in deserted warehouse districts, especially those ancient warehouses with long grids of windows on all sides. Seeing windows–or their light shadows–within windows gives me a joyful frisson.

One of the beauties of David Lynch’s black-and-white cult classic Eraserhead, which I have watched 12 times, is its Midwestern Rust Belt industrial atmosphere. My brother John shares my love of this particular esthet-ic, and coined the word “colodryl” for it.

From the time I was five, I was spooked by horizontal ovals, especially those in the arches of dingy stucco porches in Iowa. I think they reminded me of the stretched out grimace of the Goony Man, the peeping-tom villain in my scariest nightmare ever, when I was five. During college, over a decade later, I would walk by a certain “malignant” house at night to test my grip over this primordial fear of mine.
I am somewhat of a connoisseur of graphic logos. Ovals are so expressive, and can run the gamut between uplifting and mocking, depending on their angular proportions. On the other hand, I find myself wincing at those partial ellipses on drug and telecommunication logos, whose euphemistic triteness lend a totalitarian feel to mod-ern billboards and truck panels.

I have noticed that my various obsessions reach peaks of intensity and then wane gradually after awhile, which can be anywhere from years to decades. The pleasant ones fade from overexposure, much as the poignancy of a particular musical recording lessens after I “burn it out” by listening to it over and over again.

My more menacing obsessions require the antidote of verbal analysis.

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.”


Though I have never been a joiner, my bent for performing and artistic interaction has forced me into too many group situations. I am more collaborative than competitive or aloofly self-sufficient; besides, I have never been accomplished–or brazen–enough in my piano playing or singing to perform solo in front of a willing audience.
(Ed. Note - Mary-Minn did perform a solo harmonica piece at this year’s Shy Person’s Talent Show.)

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.
In July of 2000, I was working as an enumerator for the Census Bureau and writing for two agricultural journals. Meantime, my health was misbehaving, so I was seeing too many holistic practitioners. I was just starting to divulge to these well-meaning folks that I am autistic, in the off chance that one of them would have some simple and pleasant panacea for all that ailed me.

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.
But it was too late. Tim, Nel, Michelle, Melissa and Steve–KindTree’s board of directors–invited me over for dinner. Kindred spirits they were. I regaled them with my life story, and they not only didn’t flinch but seemed to find me entertaining and amusing, though doubtless a bit odd. They invited me to be their first autistic speaker at their upcoming autism retreat, two weeks hence.

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 newsletter has enriched our autism scene by attracting friends from northerly reaches. From these friendships has come a group of folks that calls itself the “Autism Movers and Shakers,” comprised of folks along the I-5 corridor who meet monthly at Kwan’s Chinese Restaurant in Salem to chew the visionary fat. PAGE 3 Anybody who wants to join us can email me at Sirag@mindspring.com or call me at (541) 689-2228.

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.
This past year, our various collaborative non-profits came together to form a Lane County Chapter of the Autism Society of Ore-gon, with a monthly adult autists’ activity group that meets to do anything from trout fishing to miniature golfing, and a professional development committee. The magic is in the air.

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.

This is quite a contrast to 1987, when I started to educate myself about my autism by paying a visit to the University of Iowa Psychiatric Hospital, where my grandparents had taken me 47 years prior for regular checkups to see if I was ready to return to my parents and siblings, who were living in Beirut.

After a short meeting with one of the psychiatrists who had seen me as a small nonverbal child, I asked the hospital to send me my psychiatric records from that time. I received a smattering of notes from various childhood visits. The psychiatrist, then retired and in his 80s, wrote that he saw no more evidence of my autism, though he noted my “quick, bird-like gestures” and nervousness.

 

“I held my Dirty Little Secret of being autistic
close to the vest”

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.

That summer, I scoured our nearest public library (in Santa Rosa, California) for more information about autism. During that period, I read Oliver Sacks’ Annals of Medicine about Temple Grandin in The New Yorker, to which I was subscribing. Back then, there were precious few books written on autism, at least in Santa Rosa’s small public library. Temple Grandin had not yet written Emergence: Labeled Autistic. Most of what I was able to glean was in Science News, the only science journal there, so I was relegated to short articles on atrophied amygdalae and cerebella.

I submitted an article to Redbook about my “triumph” over autism. I figured that if I was living independently, it was because I was no longer autistic. I felt simultaneously blessed and amazingly clever. Red-book expressed interest in my query, but, fortunately for me, rejected my stiffly written manuscript. I was not ready to go public with the fact that I had been autistic. Something told me that I still was, I guess, and I needed community support to deal with that. I continued to stick to my vow, from when I was five, that I would no longer be autistic. This resolution of mine turned out to be about as effective as my wishing away the mole on my neck in second grade, by rubbing it while intoning in Draculan tones, “I wish the mole would go away. I wish the mole would go away.”

For the next 13 years, I held my dirty little secret of being autistic close to the vest. I limped along, holding it together until my weirdness started to catch up with me yet again, at which time I’d find myself yet again pulled into back offices at whatever job I was doing and chatted to about my disruptive outbursts under stress, my strange lack of eye contact, my inability to be casually friendly and businesslike at the same time, my strange slowness in learning seemingly simple procedures despite my aptitude for learning more conceptual information.

A young co-worker at my last corporate job (a printing and pub-lishing company) had a son who had just been diagnosed autistic. In an attempt to assure her that autism is not a death sentence (“Witness me, after all!”), I divulged to her that I am autistic. This reserved woman was visibly taken aback by my confession. She admitted to having noticed something “different” about me, and shuddered a little at the prospect of her precious son turning out like this maladroit copy editor on the swing shift. My intention had been to inspire hope, not strike terror in this young mother’s heart! Nor was this the last time I was to meet with such disappointment, even from fellow autists, who assured me–and themselves–that they aren’t so “severely affected” as I. I have finally learned to hold back on my sage advice!

For four years after this confession, I managed somehow to hold it together like the little Dutch boy at the dyke until my various weirdnesses would start rupturing my valiant attempts at quick-witted charm and high-energy mellowness. I’d start each job trying to impress my co-workers with how very together I “really” am, only to slide into despair when the battle fatigue of my efforts started to wear down my brittle defenses and scrape the scabs from my petty traumas.

In 2000, while enumerating for Census 2000, I told my massage therapist about my autism, as I had started doing with my alternative-medicine “providers,” in the oft chance that they might have some insight into it. She told me about KindTree Productions, a grass-roots autism nonprofit that she thought could use my skills. I had my serious doubts, about my usefulness in society and my ability to work in any kind of group, even the “autism community.” Above all, I was terrified of rejection by “people like me.” Just for starters, what if I wasn’t autistic enough?

Refusing to broach my many cop-outs, she foisted me on the board members, who not only tolerated me, but turned out to be kindred spirits. Michelle, Steve, Tim and Melissa invited me to speak at the retreat two weeks later. There I met my first fellow autists. It was a profound coming-home for me.
For the next year or two, as I got more involved with KindTree and then the larger autism community, I annoyed my pre-KindTree friends with my sudden “obsession” with autism, which bordered on messianic, I guess.

My connections in the autism community, meanwhile, brought me into contact with employers who saw my experience with being autistic as an asset in working with other autists and in the DD community. I accepted that I had a disability, and signed on with Voc. Rehab. My counselor helped me draft a self-employment plan for back-book indexing, and then connected me with some peer mentoring work. My various new employers worked with me in managing my freakouts, helped me work out subroutines to compensate for my difficulties with executive function and thinking on my feet, and salved my eroded self-esteem by helping me to discern and work with my sometimes elusive abilities. I discovered skills, in particular certain offbeat people skills, I had let myself be convinced were beyond me. I discovered new lines of work.

As I gained confidence and perspective into the many shades of autism, I became a little less strident in my “message,” so I was able to start “educating” not only people in the autism community, but those who had known me before I “was autistic.” For the first time ever, people valued my opinion and experience enough to ask me to give presentations. This helped me to overcome my worst phobia–besides dropping, spilling and losing things–that of public speaking.

I am finding a place in the autism community, just in time to escape from an increasingly lean-and-mean business arena that is being downsized and outsourced. I am hoping to help build a refuge for those of us who don’t speak the corporate dog-eat-dog lingo. Wish me luck on this one.

Mary-Minn Sirag

 


Mary-Minn's Stim Page

(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.


March 2004

(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.
Autism Forum Summary June, 2003

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
political action.

Margaret  Theisen, the director of Full Access Brokerage, explained how FAB was created  to provide services to adult clients whose wait-
listing  for up to a decade had  led to the Staley Lawsuit. She said that funding cuts have forced FAB not only to turn away new clients  but to
waitlist until 2007 all clients slated to receive services in July. She dubbed Governor Kulongoski and the House the best "advocacy pressure
points."

Lynn Greenwood, the director of Lane Developmental Disability Services, said that the  budget cuts have increased case manager’s  case
loads while providing  less money for training. She said that Lane D.D.S. may be losing the family support program. She reminded parents
and educators that IDEA is not just a good idea, it’s the law.

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-
es. She mentioned an equalization lawsuit that would even out tax-based differences in services.

Kitty Piercy, a former state representative, serves on the Lane County Commission of Children and Families, and chairs the Oregon Commis-
sion for Childcare. She also co-chaired Yes on 28, which passed in Lane County. Portland is trying to pass a similar tax measure. Piercy rec-
ommended the Family Advisory Committee for advocates.

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
said.

County Commissioner Peter Sorenson worked as a state senator with Kitty Piercy. In July, he said, 97 Lane County government workers will
be laid off; 47 of those are in public and mental health. This represents a bigger hit than other departments.

The second panel, entitled “New Developments in Brain Research, Interventions and Behavioral Management for Autism Spectrum
Disorder" explored non-pharmaceutical interventions for autists.

Dr. Bove is a Eugene naturopath who practices the DAN! protocol, allergy testing and chelation. He has been practicing naturopathic medi-
cine for the past 11 years, and the DAN! protocol for a few years. Dr. Bove tests for and then treats allergies, parasites, viruses, yeast over-
growth, and heavy metal accumulations. He chelates with DMPS, botanical agents and DMSA.

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-
agement, but  now treats PTSD, as well. She has an autistic child, so she has found herself working  increasingly  with autists and their fami-
lies. She teaches autists to decipher nonverbal games and cues. As she puts it, autists "need to become dopamine junkies and to bond with
emotional memories."

Carter is on the diagnostic team for the O.H.S.U.‘s secretin project. Her approach supplements biomedical techniques. She finds bio-feed-
back most useful for adolescents and adults.

She sees emotional dysregulation as a root of the phobias and horror of surprises  afflicting autists. She cited Steve Gutstein as a new pioneer
in behavioral interventions. His approach, called Relationship Development Intervention,  teaches nonverbal games to help autists learn flexi-
bility and to focus more on relationship than objects.

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-
id. He has found cranial sacral therapy helpful for people with neurological and behavioral problems, as well as those with skull abnormali-
ties such as flat heads and osseous lesions, 75 percent of which are below the ears, he said. He said that five minutes of pressure can shut off
a nerve.

Rhonda Way  teaches a weekly sign language (modified American Sign Language) class  at Bridgeway House to kids in the autism spectrum
and another one to adults and parents of autists who want to teach it to their kids. She said that babies on and off the spectrum start talking
months earlier if their parents start them off in sign language. Sign language is especially helpful for children with verbal communication
problems. Verbal and hearing students  too enjoy improved communication skills. Kids in all walks of the autism spectrum learn to make
more appropriate eye contact. Sign language enhances artistic expression, also.

The third panel, on “Dignity, Self-Determination and Independence: How to Maintain During These Uncertain Times”, was a rally for
self-determination and empowerment of people in the autism spectrum, along with all people with developmental disabilities. Rick Newton
said, "there is no such thing as a behavior problem, just uneven self-advocacy." Pam Ring, the director of The Arc of Lane County, said that
she started out "advocating for people who [could] not speak for themselves, but found that they can speak for themselves."  Molly Elliott,
the program director for City of Eugene’s Specialized Recreation Division, described her programs at Hilyard Community Center, which in-
clude day trips to fun and scenic destinations, holiday parties, arts and crafts and cooking classes, parties, friendship groups, and yoga class-
es. The Center also hosts many of KindTree’s events.
The fourth panel covered “New Developments in the Autism Community: Alternative Supports, Support Groups and
Schools”. Susan Parks and Dawn Stahlberg from Autism Training and Support created an autism classroom at Hamlin Middle School in
Springfield. This sensory based program teaches the kids to self-regulate their nervous systems. The first and last periods eases the transition
from home to bus to school--and vice versa--and to fill out their check-off lists or do homework. It also is a refuge. The class works on so-
cialization skills, giving the students a an opportunity to  relax and have fun together.

Cheryl Nel Applegate, a case worker at Lane DDS, facilitates KindTree’s monthly autism support group. She talked about the friendships
and camaraderie that have blossomed in the three years since the group got together. The group came  up with a long list of topics, one of
which it discusses every month.

Nan Lester, who started the Asperger Counseling Northwest, talked about  how the Coalition has returned  to being a support group for parents
of kids with Asperger¹s. For a while, she said, the group was hosting a long series of guest speakers. AAC will be hosting a Temple Grandin
conference in October.

Pat Wigney, the director of Bridgeway House, talked about Bridgeway’s mission to house a "trauma team" for parents whose kids have just
been branded "autistic" and a host of professionals working with autists. These could include doctors and naturopaths; occupational, dance
and art therapy;  classes; an autism library; resource referral; support groups. Pat conceived her brainchild last summer; it was born in Octo-
ber in her living room.

Tim Mueller of KindTree offered to begin a discussion on how to create an autism network organization here in Lane County. People were
enthusiastic, and I expect we’ll hear more about this idea as time goes by.

It was a great Forum. Look for it again next year!  Mary-Minn

 


From the Inside Edge

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
in the distance; turn all the leaves inside out; paint the sky a brilliant purple-black; and smell electric right before the drama starts. I love the huge warm rain drops, and the crackle-claps of lightning and thunder

€ A sea squall on board ship. Going on deck and smelling the ocean, perhaps playing ping-
pong, or lying in my bunk and being rocked to sleep. Enjoying sea legs on dry land for days after-
wards.

€ Going out on the jetty during a storm. € Container ships being loaded at the dock. € Standing
on a bridge overlooking a train track and waiting for the train to pass under it, its horn dopplering as it passes under my bridge. € My cat gleaming sleepily from one of her high places. Also, her purr vibrating against my ear. Prrrrr..

 € Jumping off of high places. Operating a boom crane. € Cracking my knuckles and joints.€ A
shiny four-foot screw I saw at a machine shop last week. € Chameleons, salamanders, praying mantises, garter snakes.

€ 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,
I have been participating in a study on autism that I ran into while journeying forth from Tim's trusty Kind Tree site. The study is
being conducted by the Autism Research Centre, Departments of Experimental Psychology and Psychiatry, University of Cambridge, Downing Street, Cambridge CB2 3EB.
They responded to my e-mail with a series of questionnaires, which took me much less time to fill out than the test makers had
predicted. Even so, I have always found multiple-choice (I sometimes call them "multiple-guess") tests tricky, especially when my answers are supposed to describe myself - or my perceptions of myself. I would have answered many of these questions differently even ten years ago, let alone at my most severely autistic, as a small child. For instance, I still was a head-banger back as recently as six years ago. Every question seems to have its own extenuating circumstances, furthermore, which can make it difficult to make only one choice. Furthermore, it is difficult not to read into these tests the answer they want, rather than an honest answer. My tendency is to overcompensate in the other direction. Just another example of how autists ­ or at least I ­ tend to look at themselves from the outside as well as the inside.
Soon, I shall be receiving a DNA test, which requires me to swab my mouth ever so gently with a cotton swab and return the
(slobbery) swabette to them for DNA analysis. I have excerpted the following italicized information from their November, 2000, Cambridge Autism Research newsletter, which
they e-mailed to me. It covers some of the test results, plus some other items I found interesting:

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
Journal of Autism and Developmental Disorders (JADD) next year.

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
of this research will hopefully lead to useful training programs for people with Asperger¹s or High-Functioning Autism.

3. Cambridge University has recently opened a new clinic: the Cambridge Lifespan Asperger Syndrome Service (CLASS).
This clinic offers a diagnostic assessment for adults who may have Asperger Syndrome (AS) or high functioning autism (HFA). It is part of the local NHS Trust (Lifespan), and a charitable grant allows assessments to be made free of charge. Referrals are via GPs.

4. Folk physics and folk psychology
In our last newsletter, we reported that the obsessions of children with autism were more likely to relate to how things work and
less likely to be related to how people work. The Obsessions study was published last year in the British Journal of Psychiatry. We also told you about the 3 individuals with AS who were at or near the top of their engineering, computer or math-based professions, but still had problems with social communication. A paper on these findings was also published last year, in Neurocase. These two sets of results supported the idea that people with an autism spectrum condition have problems in folk
psychology (reasoning about the social world), but their folk physics skills (reasoning about the physical world) are as good if not
better than non-autistic people.
Recently, we have investigated this idea further by using new tests of folk physics and folk psychology with children who have
AS. As predicted, the children found the folk psychology test difficult. However, their performance on the folk physics test was superior to children who do not have AS. Finding an area of cognition where people with an autism spectrum condition have a real strength is just as important for long-term research as finding areas of weaknesses. The results of this research will appear in the
Journal of Developmental and Learning Disorders next year.

5. "Reading the Mind in the Eyes" Test
Many of you may be aware of the "Eyes Test," which asks people to judge what emotion someone is experiencing just by looking
at their eyes. This is an advanced test of (one aspect of) social intelligence. Women are generally better at this than men, and adults with autism spectrum conditions tend to find the task quite difficult. We have recently improved the test and made it even more challenging, so that it gives a more accurate indication of someone's social intelligence. This can be helpful in identifying people with quite subtle social difficulties. The results of this research will appear in the Journal of Child Psychology and
Psychiatry next year.

6. Newborn babies
In many of our experiments, we find that men tend to perform more similarly to people with an autism spectrum condition than
women do. In other words, males tend to be better at folk physics tasks and women tend to be better at folk psychology tests. Undoubtedly, the difference
between males and females is partly due to environmental influences, but we were interested in whether there was any evidence
of an innate difference between males and females.
We therefore studied 100 newborn babies in the Rosie Maternity Hospital, Cambridge, and found that boys showed a stronger
interest in a mechanical mobile, whilst girls showed a stronger interest in a face. Of course these are group averages: some boys preferred the face and some girls preferred the mechanical mobile. Nevertheless, the overall pattern of results suggest that these differences in folk physics and folk psychology are partly innate. Hormones or genes might contribute to the differences in males and females.

7. The amygdala theory of autism and brain scanning
Functional magnetic resonance imaging (fMRI) is a brain scanning technique which allows us to look at which areas of the brain
are being used when volunteers are carrying out different tasks. We used fMRI to show that one particular area of the brain, the amygdala, was not activated by adults with autism when they were doing the Eyes Test (see above), but it was activated by adults without autism. Other evidence, such as abnormal size and structure, also suggests that the amygdala is one of the brain structures
which is abnormal in people with autism. This research was published last year in the European Journal of Neuroscience. We are
just starting some new fMRI studies which will test the amygdala theory of autism and are looking for volunteers to participate.
Further information is given in the New Research section below.

8. Autism and Tourette Syndrome
Tourette Syndrome (TS) is a neurological condition characterised by involuntary movements and vocalisations known as tics.
Following reports that some children with autism also had TS, we investigated the rate of TS in children with autism. Nearly 500 children with autism were checked for TS. About a third of the children had some sort of tic and 6.5% actually had TS, much higher than would be expected by chance. This study appeared in the Journal of Child Psychology and Psychiatry last year.
This result is important for two reasons. Firstly, finding that a child with autism also has TS allows the child's pharmacological
management to be reviewed. Alleviation of tics can help to improve quality of life. Even for children with mild TS, not needing medication, knowledge of the condition can help parents and teachers in their continuing support for the child.
The other important implication of the result is that it
suggests that autism and TS may have some causal factors in common. These causal factors could be genes, abnormal brain chemicals, structural abnormalities in the brain, or some combination of these factors.

9. Testosterone and social communication
A final study to tell you about was carried out with the babies of mothers who had had an amniocentesis (amnio) during
pregnancy. Amnios allow the doctor to analyse a range of chemicals from early in the pregnancy. We analysed the hormone testosterone produced by the baby. When these babies had their 1st birthday, they were invited to our lab and were videotaped during play with their parent. A surprising result, but in line with an old theory of brain development, was that the babies whose prenatal testosterone was highest made the least eye contact, and vice versa. This intriguing little clue about the role of a chemical in the development of sociability is something we are obviously following up for its possible relevance to autism.

10. New research
We currently have three major new projects, which are based in Cambridge, England.

1. An fMRI (brain scanning) study which will further investigate the amygdala theory of autism (see above). This study is based in
Cambridge and London. We are looking for right-handed males who have AS or HFA, who are either aged 10 to 14 years or are adults (18 years and over).
2. A study of the development of social intelligence in children. We are looking for children aged between 18 months and 3 years
who have a diagnosis of HFA or specific language impairment. We will make observations whilst the children try some simple tasks. This study is based in Cambridge.
3. A genetic study of AS and HFA. You can take part in this one from the comfort of your own home! If you are an adult with
AS or HFA or you are the parent of a child with one of these conditions, information about the genetic study should be enclosed.

 For more information, contact Sally Wheelwright, Research Coordinator. Email: s.wheelwright@iop.kcl.ac.uk
She can be reached at two addresses:  Depts of Experimental Psychology and Psychiatry, Autism Research Centre, Downing
Street, Cambridge CB2 3EB, UK. Tel: 01223 333550. Fax: 01223 333564
or  Neuroimaging Research, ASB Bldg., 4 Windsor Walk, Institute of Psychiatry, De Crespigny Park,

Denmark Hill, London SE5 8AF, UK. Tel: 020 7848

0424. Fax: 020 7848 0055


compiled by: Mary-Minn Sirag,

Kind Tree Board Member


On Living With Autism
 by Mary-Minn Sirag, October, 2000

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.
Through a series of difficult but fortunate circumstances, I was mainstreamed through school, college and work. I "swore off" off autism when I was about 5, and pretended to be "normal."

Until I was about 11, I was fairly oblivious to pain, and often could not tell the difference between being sick and well, let alone how to articulate it. I was sick a lot.

I developed social skills by imitating people I admired or envied; then, by studying behavior. This was analytic, not instinctual.

Throughout my life, I have been watching myself from several angles, including how others are perceiving me. I watch myself from outside, as well as inside.

As an autist, I have been preoccupied with the concept of "normality," as in "what is it?" I gave up being normal in my early teens but continued to be fascinated with the idea. I have developed a fair amount of empathy by trying to understand non-autistic being. I spent the greater part of my 20s checking out society's underbelly, testing and examining society's ideas of evil and flouting danger.

I started reading abnormal psychology books in 7th grade, starting with Freud's case studies on hysteria. I read these books, hoping for some kind of expiating insight into my condition. Eventually, more people were writing books on autism, which I devoured. Pop-psych books are my favorite junk reading.

I am more a conceptual than procedural learner. For instance, I found trig easier than long division and double-entry bookkeeping. I have an aptitude for foreign languages and alphabets, perhaps because they have no procedures, just fairly well-defined rules and patterns. I am flummoxed by dance steps and complicated game rules. I do better improvising.

I am terrified by suddenness. The sound of a siren or a jackhammer penetrates my central nervous system directly, almost bypassing my ears. I freak out when I fall, drop or spill something, am confronted with something illogical to me, am confused or overwhelmed. I think my razor sharp reflexes are partly a compensatory mechanism. I often catch things, and myself, in mid air.

I am synesthetic, blending smell and taste with color, and sound, to a lesser extent. I have a "photographic" memory for taste and smell, but am quite aphasic visually. I remember a conversation but not a face until I have met a person several times. I learn kinesthetically, from the inside rather than through observation.

It has taken me decades to learn to multitask, which I do, more or less, by dividing tasks into many small sequential ones. I do better with one final deadline I can maneuver around.

I need rules to be explicit, since many social cues often elude me. I read people poorly and can be slow to react, especially to something emotionally charged. I am more perceptive with the written page, and speak less cogently than I write.

I sometimes confuse small-talk and conversation, and can be obtuse about distinguishing between being helpful and meddlesome. Bemused by such subtle put-downs as "interesting," I am constantly parsing clichés for their real intentions and origins.

Although I have developed an excellent work ethic, it has come slowly and with difficulty, through assiduous philosophical and ethical analysis. I question rules and social constraints until I understand how I’ll benefit or affect the "common good." Being entirely self-motivated, I work better with loose boundaries than tight ones. I am leery of authority, including my own.

My freakouts feel more like seizures than temper outbursts. They frighten people until they learn that, left alone, I recover quite rapidly. SIBs help me release the electrical rage I feel without hurting anybody or anything. I recently weaned myself from head-banging, but I still bite, hit and cut my arm.

I try to avoid raising my voice, as the consequent rage erupts into blinding anger. I do not indulge in road rage, not even swearing under my breath. Although emotional, I try to avoid expressing heavy emotions. I try to forgive ­or rationalize­ whatever wrong I see but cannot change.

I have spent much of my life figuring out where I "come in," afraid of being "found out." Only after I discovered Kind Tree this summer have I started to "come out" with my autism.

I consider my life after 4 years old to have been a reincarnation back into an abandoned vessel; then, a reconstruction of all that was lost during that first failed attempt before I jumped ship.

Mary-Minn Sirag is a Kind Tree Board Member and free lance journalist.

 

 


P O Box 40847
Eugene, OR 97404
541-780-6950