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An Asperger's person, mother of an autistic son, tells the story of her life, that never made sense until it could be placed in the perspective of Asperger's Syndrome.
Topic: Important events in your life. Share them with members, who will then relate other experiences back to you.
Hillary Hays has Asperger's and is the mother of an autistic son. Here, she shares her memories in the hope that others may understand and recognize them, so that she will be less alone in the world.
Copyright © 1996 by Hillary Hays. Unauthorised distribution or reproduction forbidden.
11/24/96 HILLARY A. HAYS
(added to this page 3/31/97)
From toddlerhood, I recall my obsession with spinning in circles. Many children "spin", get dizzy, fall down, and then perhaps are done with the game. For me, it was a constant activity. My mother reports waking in the night, and in the morning to find me rapt in spinning at the foot of her bed. Usually I was oblivious to her voice in her attempts to interrupt or redirect me. I had what was for me an elaborate method by which to control the effect the spinning had on me: I knew that if I kept my head erect I would not get dizzy, and that if I tilted my head to the left, I would get dizzy. I only allowed myself to tilt my head to the left. The right was not allowed. This fascination of mine persisted well into elementary school, when I seem to recall being confronted during recess by teachers who said that they'd had quite enough of my spinning.
I also owned the three-dimensional version of a triangular prism which would keep me occupied for hours on end. It was almost as if I preferred to look at the world through my prism. It made beautiful rainbows, but more than that it made the world all topsy-turvy. I was engrossed by the way it made an ordinary floor look like the edge of the world, and that if I kept walking, I would fall off into the pit. Far from being frightened by this prospect, I was intrigued by it, and I seem to recall that my mother was not pleased with my perseveration on this activity.
From infancy, my hippie parents did a lot of camping and driving back and forth across the country. I developed an intense fear of pit toilets and insisted on going potty in the bushes. I was certain I would fall inside the great hole of the outdoor toilet. I also had a debilitating fear of kelp seaweed, which my father would chase me with, when we went to the ocean. I believed it was a living snake and nothing he could say would convince me otherwise. I would have very big tantrums when exposed to either of these things. Conversely, things I ought to have been afraid of were not fearsome to me. I was known for my preoccupation with brown bears at campgrounds and had to be prevented from reaching out the window of our VW bus to feed them animal crackers, or whatever sort of snack I had in my possession. I also had a game of finding caterpillars and placing them all over my body. My mother took a photograph of this endeavor once, but most of the time she found herself having to pluck the caterpillars off my screaming body. At least, I think she did. It's a dim memory.
My father tells me that my very first playmate was an autistic boy who lived down the road from us in rural West Virginia. I don't remember him, but my father tells me the boy would run away from home and come to my house. His name was Robbie. I'm told we seemed to have a special connection.
In kindergarten I recall being withdrawn and very afraid. It was painful to make eye contact. The playground was on the roof there, and I was afraid of it because I swore it didn't have a fence around it. I was sure I was going to fall off the edge. Of course there was a high fence, but I insisted there wasn't. I recall the other children joining together to play on various equipments, but I didn't understand how they could get together to play like that. It didn't make any sense. I do recall being praised for a seedling I grew in a Dixie cup. It was the first and last time I remember being praised in a school environment. I thought my seedling was very special and that no one else knew the secret of how to grow them. I felt like I was in a bubble and no one else could touch me or possibly have access to the same information that I did.
I did have one friend between the age of two and five named Melissa who seemed to take me as I was. She didn't like to spin or look through prisms, but she was content to observe me and follow my lead. One of my other favorite things to do was sit down with pen and paper and pretend I was writing a very long letter to myself. At that time. I did not really know how to write any of the alphabet. In fact, besides my love for make-believe language, I don't recall having any grasp of the concept of numbers or colors or of any of the other preschool concepts children usually attach themselves to. I just had very rigid rules about an assortment of things. By age five, I believed that monsters came out of mirrors and that the noises on television could really hurt me. One time I heard the theme song from "2001, A Space Odyssey", and every time I heard it thereafter I thought it meant that I was going to die. Sesame Street had a segment of crumbling pillars with "2001" playing in the background. I am still terrified when I hear that music today. I also remember having rules about what was okay to eat. I think I lived on round and red foods, (like spagettios and cheerios) and was scared of my mother's goulash because it had so many different colors and shapes in it. I started to excuse myself during meals and hide the scary foods underneath living room chairs or flush them down the toilet (before my mother caught on).
For the first half of first grade, I attended a one-room school house in Meredith, N.H. We were living in an apartment above my grandmother's gift shop and I was able to walk myself to school after a while. I did not like first grade at all. I remember at first my desk was right next to the large windows and looked out on pretty willow trees and beautiful birds. I seem to recall that my teacher changed the location of my desk because she said I spent too much time staring out the windows, and not enough time paying attention to her. I have distinct memories of "tuning out" during these first months of school, so much so that I would have no recollection of what had been said or done. I recall great frustration with learning how to read. I hated the storybooks we were given to read. I didn't care what "Spot" or "Dick" did, and I hated being made to sit at the small rectangular table with the other children during reading times. The other children were too close to me. I was terrified. It may be that the letters were mysterious to me, like hieroglyphics, and that I couldn't keep track of them on the page. If I did have an idea of what the letters were, the words and sentences didn't make any sense. Likewise, the teacher's oral instructions were baffling to me. She was always telling me not to leave my sweaters at school, and every day I would forget my sweater. And there is the infamous example of the time she told the class to bring in cans of ravioli to school to send to the starving children in Cambodia...I went home that night, requesting ravioli for dinner. Mom made it, without question. I remember washing out the can and being so proud of myself for remembering to do what the teacher said, and carried my empty can to school the next day as if it were a real prize...When I handed it over, to the teacher, I just remember her laughing meanly, and holding it up for the rest of the children to see. I remember nightmarish ridicule. And I was so confused! I had brought the can she had asked me to bring--what had I done wrong?! Sometime after that, the teacher indicated to my mother that I had hyperactivity or learning problems. I don't think they used the term ADD back then. And I wasn't "hyperactive" either, just very withdrawn and afraid. The teacher told my mother to put me on Ritalin, and my mother tried it for about 48 hours. She said that I "went off the wall" while on the medication, and discontinued it without another word. Around that time, the teacher hit me too. I remember my mother storming into school in my defense. Yet in terms of addressing any possible learning, behavior or socialization problems in me, my parents, in my opinion, fell short. No more mention was ever made of Hillary having any such problems. I was just said to be a "daydreamer" and nothing else was done.
In the latter part of first grade, we moved to Brattleboro, VT, and I was in a new school. I remember little of this school, except I do recall bringing my Christmas present, a Charlie McCarthy ventriloquist doll, to school. Unfortunately, a boy at school broke the rubber band in the doll's throat, rendering his mouth immobile. I was immediately terrified and believed that the doll was angry with me and would punish me if he got the chance. Throughout high school and into adulthood this belief persisted, and every time I would lay eyes on the dummy laying atop some storage box in the basement, I would become terrified. Sometimes I even refused to go into a basement if I knew I would see the doll. I also tried to be in a play at a local theatre during that year. I think it was Jack and the Beanstalk. I had a very small part (one line) which I practiced over and over. But when it came time for the performance, I froze. The lights and the voices and the crowded room was terrifying to me.
My father and mother split up when I was in second grade and I would go to visit him on the weekends. He lived in one very old house and I believed I could see ghosts there. I also became fascinated with eggs and was certain I could hatch one if I left it overnight wrapped in my sweater. It always had to be on one particular chair if it was going to hatch. Dad would sometimes take me to a bar in the evenings that also had a restaurant attached to it. One time a neighbor took me and her daughter to the restaurant portion of the establishment, and I blurted out, "But why aren't we in the bar?" The mother was shocked and scolded me and I didn't know why. In that same bar I also had a rule that I had to play one certain song on the jukebox as many times as I could get away with before anyone told me to stop. Funny enough, that song was Helen Reddy's "I am Woman", which needless to say, was very irritating to the predominantly old geezer clientele.
I also recall beginning to bite my fingernails and cuticles obsessively, until they bled. I had a very hard time refraining from picking my nose in public, and often felt the compulsion to "rock" although I knew that rocking was undesirable behavior.
I don't remember much of second or third grade, except that I was mystified by the games the other children played. I didn't understand "tag" or "girls chase the boys"--I didn't know what the point of these games were. One time I overcame my fear and tried to participate, but it still didn't make any sense. I remember still being clueless when it came to numbers, but did somehow learn to read. Nevertheless, I always had difficulty understanding what I read. Road signs were particularly troubling for me. I remember once I saw a road sign that read: Danger. Hidden School Bus Stop. And I spent a good half hour looking out the car window for the hidden school bus. My mother just chuckled when I told her what I was doing. I thought the sign was lying to me, because I never saw any hidden school bus on that trip. Near the end of third grade, my mother remarried. I didn't like the man who was now my stepfather. My horrible temper reemerged and I would fly into rages when he told me to do certain things. Once I said something very mean to one of his high school students, and when he asked me to apologize, I flew into a blank-out rage and I think I bit him. All I knew was that I wasn't going to say I was sorry. I also discovered my mother's book, "The Joy of Sex" at around that time. I was so disturbed by the illustrations that I found a large black magic marker and scribbled out all the pictures. It was the beginning of a series of destructive behaviors that would follow.
I also remember an awareness of my sensitivity to certain select noises that emerged around that time. I grew to hate the sounds pets made when they groomed themselves, and always wanted to kick them to make the noise stop. That preoccupation persists until the present. I also developed a hatred for any sound which I assumed to be associated with kissing or other sexual activity. This began when my stepfather moved in to our apartment, prior to his marrying my mother. We had a small apartment, and even though I had my own room with a door, I was always certain I could hear them even when there wasn't anything to hear. I also became aware of my refusal to allow my mother to clip my toe-nails, because the sound and the sensation both was painful, and I don't think I like hand-lotions very much. I also continued to hide my food beneath the furniture when ever I could get away with it.
When I was due to start fourth grade, we moved to a small town called Lyme, N.H. This house was ideal for me because it bordered on dozens of acres of fields and wooded areas. By this time, my fantasy life was well developed. I believed that at the entrance to the forest there was an invisible gate that only I could see. When I walked under the bough of trees, I had slipped inside another world. I swore I could see faeries and trolls and elves, and had again the distinct impression that I was special and was being allowed to see and do things that other people couldn't. The creatures in the forest told me I was welcome, that I was like them, and I stole away there as often as I could. There was also a small barn on the property where many bats lived. I would spend a lot of time watching the bats sleep. I also developed a fascination with newts and salamanders, and unfortunately for them, spent long hours catching them, and trying to get them to mate. I never injured them exactly, but I knew if I watched them long enough, I'd figure out how to make them mate.
I also developed a strong attachment to a 3 foot tall stuffed toy bear, and insisted on sleeping with it. One day I arbitrarily decided that it was up to me to find out what this thing called "sex" was, and that it was best I find out about it on my own. Now, I was never sexually abused, so I have not explanation as to why I perseverated on this matter. I then spent weeks on the project of fashioning something that might resemble a penis, using many different materials before I arrived at what seemed to be the most suitable materials. Fortunately, after all that work, I realized that my project had been in vain, that it would never serve the purposes I intended, and so I abandoned it as abruptly as I had begun it.
Around that time, during the winter, I began to engage in cutting out whole families from department store catalogues. I would sit by the fireplace, and one by one, each family member would be cast into the flames. I recall "blanking out" as I engaged in this activity, staring at the fire. My mother saw what I was doing once and made me stop and I was very angry at her. The rule was that the whole family of cut-outs had to get burned up or else I couldn't do anything else I liked for the rest of the day. That winter my stepfather was also trying to teach me to learn how to ski. He wanted me to learn how to snowplow first, but each and every time I got off the lift, I would tuck, and barrel down the hill as fast as I could, exhilarated by the speed.
In fourth grade, I remember feeling lost and in a fog most of the time. I couldn't figure out how to "tell time" which my teacher seemed to think was a problem. Mathematics were profoundly confusing to me. I think I gave up trying to understand math around then. I remember trying to follow the other kids' activities on the playground, but was scared to jump off the high swings like they did. A boy also teased me throughout the year by sending me love letters at school. Every time I would think that he meant he liked me, and then he would announce to everyone that it was a big joke, because I was the ugliest girl in the world. I couldn't seem to connect one incident to the other, so every time I was hurt by his teasing. I remember being called into the guidance office because my teacher said she thought I needed speech therapy. I remember going to the speech therapist at school and being completely confused by what she wanted me to do, and why I was there. I didn't think there was anything wrong with the way I talked, and I'm still not sure what she suspected, but apparently they thought there was something wrong with my speech.
During that year, there were a couple of girls who tried to initiate friendships with me. I remember going over to their houses, and being really scared, and not knowing what was expected of me or what would come next. One girl I knew lived in a trailer, and I was more fascinated with the structure of the trailer and how everyone fit into such a tiny place, than I was interested in her company. I would go through each and every room trying to figure out how it all fit together and where everyone slept. I also knew a girl whose family was so poor they lived in the basement of a house that no longer stood. I would go over there just to try and figure out how people lived in a basement with no house over it, how they kept warm in the winter, why there were sheets hung up where walls should have been. At the end of fourth grade, I had my first real birthday party. I remember being very nervous, and not wanting to go through with it. A handful of girls came, but I really didn't want to sit down with them or play with them. I just wanted it all to be over so they could go home.
I remember these girls complaining that I didn't seem to take any interest in them. They also said that when they asked me how I was, for example, I would talk about myself only, and always forgot to ask them how they were. This absence of reciprocity continued to present a big problem in relationships of all kinds until the present day.
At age 10, I began to write my own stories. My mother had given me a child's typewriter that only typed in capitals and I thought it was the greatest thing in the world. My grandmother had died of alcoholism recently, and an old tom cat of ours had died somewhere off in "my" woods, so I was naturally thinking a lot about death. I had read a long novel by an Englishman whose 20 year old Siamese cat had died. I recall that book being very long and complicated, yet this time I seemed to understand what I was reading. I learned I could memorize the poetry he wrote for his cat and recite it out loud. I also determined to write my own novel about dying things. I think my book got to be 13 pages before I lost interest in it. I took it to school to show my teacher, and she called my mother, indicating that she thought I was seriously disturbed and obsessed with the idea of death. I may well have been, in a certain sense, but my mother took great offense at that, and stormed into school to tell my teacher "where she could go." Again, mother believed there was nothing unusual about Hillary. I also took to keeping diaries and made up new characters to write to in each successive diary. I decided these "friends" would be my only friends and that I didn't really need to talk to anyone else anymore. I also had a hard time understanding why our cat didn't like to be swung high in the sky in the laundry basket. Mother told me the cat didn't like airplane rides, but I always got so excited when I engaged in this activity, and I never wanted to stop. I further began to write fantasy stories around age 10, and developed elaborate worlds containing mythological creatures and angry Gods. I still have copies of these stories and it seems unusual that I wrote them at that young age. The worlds I created were highly structured and women were always in charge of making the rules.
In Sixth Grade, my mother and stepfather must have felt that on some level I was being failed by the public school system. We had moved to Norwich, VT, and they had enrolled me in an alternative school in the hills. This school was modeled after an approach developed by an Englishman named Summerhill in the earlier 1900's. The school believed that children should be encouraged to grow at their own pace, that their unique and individual talents should be cultivated and appreciated, and that they should be encouraged to set rules and solve problems independent of adult interference.
From my first day there, I was in absolute heaven! There were no structured classes, per say: in the mornings, we were read stories about relevant historical events, and later on, I would receive individual lessons to help me try to understand fractions and how to tell time. The remainder of the afternoons were spent involved with one partner on independent projects. Myself and another girl elected to write a story about "Starbabies" aka cherubs. I did all the writing, which I was good at, and she did all the illustrations, which she was good at. Our school-wide project involved the production of a weekly newsletter for our parents. The rest of our days were spent outside creating whatever reality we decided to create. We built a whole village from woodblocks, and with only matchbox cars and planes to fuel our imagination, we developed a prosperous metropolis, leaving room for town parks and a neighboring vacation village. I could relate to this team-oriented endeavor, because there was no wrong action to take. When I made the town park in the center of the city, the other children were just as pleased as when I built the town's first skyscraper. For the first time in my life, my imagination and creativity were really valued by adults and other children. And when I did get overwhelmed, there was biofeedback equipment on the premises to help me to relax. Unfortunately, the school closed for funding problems at the end of that year, and I was thrust back into public school once more.
It was decided that I would enter a middle school which was organized in terms of individual "teams". There were five such teams or groups of students, each suited to a particular student's abilities and skills. I was placed in Team One, which was designed for students who had presented learning or behavior difficulties of specific or unknown origins. The classroom setting was less structured, as were the lessons. It was far more structured than The Learning School, however, and I was not happy. I took to retreating into the most remote stacks in the library whenever possible, and dreaded walking through the long hallways. Around that time, eye contact took a newer and more painful meaning for me: my eyes would start to water any time I attempted to look at any of my peers, especially in those long, frightening hallways. I also continued to reject any and all organized sports activities, because it was said I was clumsy, and I was afraid of being in the close locker room quarters. I did begin again to take ballet classes. I had tried to take ballet when I was six, but the teacher complained I had profound right/left confusion and there was nothing she could do to help me. At age 11 or 12, ballet became my life, so to speak. While I remained afraid of my peers, and of criticism or exposure in general, I found that ballet provided me with the ability to tune out everyone else, and simply focus on myself to the exclusion of others. Because I had always felt so clumsy in sports activities, gaining in grace through ballet was very important to me. The summer I turned 13, I went off to my first ballet camp. This was a very frightening experience for me. I remember being constantly on edge and in a state of panic. The following summer, I attended a different ballet camp, and it brought to me one of the most severe "blank-out" episodes I've ever experienced. Some of girls read my diary one afternoon, and when I discovered them in the act, I flew into the room, leapt atop the top bunk, screamed at them in a blinding rage, then leapt back down, running out of the house and into the large field beyond. There I settled comfortably into a comforting state of warm nothingness. I could vaguely hear voices some time after, searching for me, calling out to me, but I would not or could not respond. It was at least an hour before I came out of it enough to begin the walk back. The next day the only acknowledgement I received for my "reaction" was from my modern dance teacher who told me that he used to do the same thing as a child when he was hurt by someone. My parents didn't even mention the episode. It was just forgotten like everything else.
Also during these years I exhibited many risky, fearless behaviors. Rock climbing without ropes, skateboarding down steep roads with no protective gear, and engaging in dangerous tricks (standing up on the rear of my five-speed while a neighbor kid sped me around.) My pattern of debilitating fear vs. no fear at all continued to spiral. I was never injured in any of these exploits, but always seemed to look for activities that would bring about possible injury. My ballet teachers advised me to stop these activities to ensure the safety of my body for ballet, but the only risk-taking behavior I was willing to give up was skiing. What I really liked about ballet was the constant pain it caused me---bleeding feet from toe shoes were a daily affair for me. I liked the way I was able to block out the pain during classes and how I would refrain from letting on how much pain I was in until I was safely out of the sight of my peers in dance class.
My interaction with my peers continued to be troubled throughout eighth grade. I had one friend, Sara, who was a neighbor. She was a lot like me. Sometimes she would get so mad she would smash her fist through the windows in her house. She also liked to do the same risky things I did. I liked her and she liked me because we seemed so much alike. Otherwise, I avoided eye contact at all costs and kept to my fantasy world. At the age of 12, I began writing my as-yet-to-be-lived autobiography, which was filled with lots of horror and tragedy. I worked on this story over the next 5 years, and it was my constant escape from the realities of the world.
In the first two years, high school presented me with more of the same terror. Mathematics had gotten yet more challenging--I failed Algebra twice, and Geometry as well. I was afraid to take an art class because I was afraid of the gifted and talented kids who spent time in the Art Room. I did, however, do well in three foreign languages, including French, German and Latin. I consistently excelled in terms of grammar, but was plagued by poor pronunciation of these languages. I also excelled in English, winning prizes for historical essays and in general doing above grade-level writing. Conversely, I was involved in a local college film project and a college-level play as well. I liked both of these roles, especially the play, which was Ray Bradbury's "The Veldt", because the characters I played were so much like me: withdrawn, elusive, adrift in private worlds which no one could really penetrate. But I was terrified to try out for plays in high school, or participate in Public Speaking classes. I remember that my eyes watered constantly and that I spent even more time hiding in the stacks of the library, crying or just zoning out. I know I spent a fair amount of time in the remedial lab involved in various tasks, but I can't recall what sort of remedial activities I was being required to do.
My mother had sent me to an outside therapist around that time for undisclosed reasons, and although she never prescribed any medications, she continued to see me for quite some time, seemingly under the impression that something was wrong with Hillary. I was never let in on the secret.
In my Junior year, I was still of the impression that I was an alien and everyone hated me. I also felt very unattractive and learned from my female peers that to be attractive to boys was very important. Suddenly, I found myself sitting alone after school in the local college cafeteria quite frequently. I also discovered alcohol at this time, and as alcoholism runs in my family, it was not a good discovery for me. Alcohol enabled me to release the constant fear which had dogged me all of my life, and it also allowed me to "blank out" in a way which seemed to be more socially acceptable. Well, not for a 16 year old girl, but acceptable in general for adults. I got myself into many frightening predicaments between the ages of 16 and 18, and yet, I felt little about them, no matter what happened to me. The date-rape at age 17, during which I made myself blank-out rather than even yell for help, scarcely phased me. Or, when the memory of it did come back to haunt me, I knew how to blank it out. By this time, I'd decided that I was going to keep on drinking as much and as often as possible. I made plans for my future that had very little to do with anything but assuring that I could live my life as an out-of-body experience. I knew my plans would include alcohol and any other drugs I ran into. As my senior year wound up, I was drunk every weekend, missing curfew consistently, and exposing myself to promiscuous behavior. I didn't mind the physical sensation of sex, although I had many rules about what I would and would not do, but I did loathe the emotional connections men tried to form with me. The emotional connections were most offensive to me, and the minute I saw them forming, I severed the "relationship" as abruptly as the idea occurred to me. A panic would come over me, a stark terror, when I realized someone really wanted something emotional from me, and I would run. Sex, on my terms, was safe, as long as no emotional bonds existed. I also had a staunch rule that what ever orgasms were, I was not going to experience one. Although I didn't mind the general physical sensations experienced during sex, I kept a tight leash on my reaction to them. It was imperative that I only feel as much as I could tolerate, and without knowing whereof I spoke, I decided that orgasms occupied the "intolerable" category. This rule persisted throughout my twenties. I was only able to overcome it through, once again, and quite literally, "taking matters into my own hands."
I made two additional "friends" at high school during those last two years. Each of them were as odd as I felt I was, and were themselves well acquainted with ridicule and being deemed "eccentric". But I found it very difficult to maintain these friendships--the girl, Horatia, was always accusing me of looking blankly and smiling in a "fake" way at her. I remember being very confused and looking in the mirror to see what my smile looked like, because I had thought I was being sincere, not fake. The male friend was so withdrawn and socially "inept" he often found himself incapable of carrying on any kind of conversation. He would get very mad if I didn't give him specific details about what activity we should choose for our time together. Because I had a similar difficulty, Jon and I often seemed to be at odds. He had a crush on me for a while, but couldn't seem to speak about it. His favorite thing to do was for us to sit in silence at the local airport and watch the planes take off and land. I just understood that that was Jon and didn't ask him to act any differently. Jon was very gifted with music, drawing and as a playwright. I often look back on him and think he fell somewhere on the autistic spectrum himself. Today he has his own band (his third band, actually) called "Jon Spencer's Blues Explosion", which has its own cult following. He has several CD's out and prospers through doing what he loves. When you see him in concert, he never makes eye contact with anyone in his band or in the audience. He is the same when you speak with him in person. Although his stage performance is raucous and dynamic, off-stage he is carefully cloaked, awkward and finds it difficult to speak.
I tried to hold down jobs in high school, but found being in the public eye very painful. Interacting with co-workers was doubly confusing for me. Sometimes I would not talk to them at all, and other times I would blurt out something inappropriate. I was repeatedly reprimanded for being cold to customers, for not smiling, for not making eye contact, and I grew to hate the idea of employment very quickly.
Despite poor SAT scores across the board, I was accepted at a small, prestigious college one half hour north of NYC. I was awarded scholarships for my writing and balletic abilities, otherwise it wouldn't have been affordable. My first day at college, I bought a large bottle of Johnny Walker scotch, and proceeded to get a crew-cut and dye what remained of my hair black. I spent the entire year drunk and high on other drugs, in NYC nightclubs, often riding the subways during the late night hours alone. I had no fear of being hurt, and followed every dark figure home for the asking. Rape situations happened often and ceased to phase me altogether. People kept telling me I should worry about diseases, but I didn't know why. Until I got one non-fatal virus which flung me into a week-long blank-out, more or less, during which I attended no college classes and refused to speak to anyone. I did refine my ability to write poetry during that year, but otherwise I was near failing in every class. I lost my interest in ballet. I identified more and more with anarchist and punk rock beliefs, and put on a very tough bravado to the world at large. I felt protected by my tough exterior, and spent lots of time in front of mirrors so I could practice my meanest faces. I also made a rule that the only way I could get across my dorm room to my bed was by laying out a plywood board path to my bed. I couldn't step off the path, so I also had a plywood path to my closet. Needless to say, this behavior was troubling to my poor roommate, and she moved out, leaving me thankfully alone in the room for the remainder of the year.
During the summer following my freshman year, I battled with my mother and stepfather daily, who were distressed over my partially shaved head and constant drinking behavior. In a rage, I packed what I could carry and headed for the highway, where I hitched from Vermont to NYC in a day's time. I managed to escape being raped by an allegedly Born-again Christian man on that journey by telling him a very nonplussed, monotone voice that Jesus would be very angry with him if he were to rape me. I slept on the streets of NYC for a week until college started again, and arrived at school with nothing but the clothes on my back. During this time, my difficulties and behaviors seemed mostly to stem from my alcoholism, although I now maintain that my alcoholism may have been as much a means of coping with my being on the autistic spectrum, as it was about being genetically predisposed to be an alcoholic.
My sophomore year was more of the same. The two actual relationships I had that year and the year before were troubled and were severed by me due to my dislike of emotional intimacy. I ran off from school shortly before the end of my sophomore year and to Boston for the summer, where I mostly lived on the street. The autumn brought me back to NYC, and after a short stint as a waitress, at the age of 20, I became involved in sadomasochistic prostitution, which I liked because it demonstrated to me that I had a high pain tolerance. I got to blank out, both by my own will, and with the help of alcohol and drugs, as often as there were jobs to do. I felt the same pride in this ability as I had when I was studying ballet. I had my own "nickname" in S&M, a whole other person to be, and she was tough as nails. Only a couple of times during the following 10 months did I actually experience any conscious fear or pain. And then, I just cracked up, and couldn't do it anymore. A broken ankle left me unable to carry on in the same capacity, and I went home, a shell, to my mother.
In March of 1987, at age 21, I made my first attempt at recovery from alcoholism. I moved to Illinois, where my mother and stepfather were then living, and began attending AA meetings. I tried very hard to believe everything I was taught by the people in AA, and soon concluded that my problems were solely the result of alcoholism, and that if I did what I was told within the context of AA, I would become a "responsible, productive member of society." That was my sole aim, excepting my persisting cat-and-mouse game with men. When I was 11 months sober, I met a man in the program and soon became pregnant. I quit smoking cigarettes immediately and David and I were married soon after. Our short marriage was troubled from the start. The fears I'd had of emotional intimacy were magnified from within the confines of marital life. Early on in my pregnancy, I shut David out, refusing to sleep with him or speak with him. He understandably grew frustrated, angry and distant. I withdrew into a world occupied solely by myself and the child inside of me. The birth of Oliver did not make matters any better between David and I. Our child was ill from his first week of life, and I was consumed with tending to his every need. I criticized David for not helping me with our baby, yet rejected his help whenever he did offer it. When Oliver was 3 months old, I left without notice to my parents' new place in Chicago, and shortly thereafter, initiated our divorce.
The history of Oliver is well-documented. Suffice it to say that at 5 months, tubes were placed in his ears for recurrent ear infections, he was diagnosed with failure to thrive, he began to have seizures, and I at the same time had gone back to college on a full-time basis while also attempting to hold down a part-time job. When he was two years old, he was diagnosed with autism. His father and I had discussed getting back together, but as I recall, David backed out. In May of 1991, I began drinking again, and Oliver was placed at my request in long-term foster care where he remains, with my ongoing involvement. I have continued to struggle with sobriety and the various other difficulties I've had as long as I can remember. I have stayed sober for 4 years and 2 years respectively, with more recent attempts at sobriety lasting no longer than nine months at a time. At present I am just over two months sober, and am now compelled to re-examine previous diagnoses, issued by counselors and in treatment facilities, which have ranged from bipolar to borderline personality disorder to post traumatic stress syndrome.
All areas of my life have been devastated. I have attempted suicide at least twice in the past ten years, and have had at least three periods of self-abusive behavior involving the use of knives and razor blades (the pain of which I scarcely felt.) I have lost a string of jobs, and each year seem more impaired than the last. I have left a string of unpaid bills, ranging from large-scale college loans to credit cards and electricity bills. I have tried and failed at college twice. I have entered and exited a series of profoundly disturbed relationships with men, which have taken me equally disturbing places. My impulsivity took me in a heart-beat to San Francisco in the summer of '95 with a man who was criminally insane. I recently was involved with a man who participated with me in the self-abusive behavior. I have also experienced continual "blank-outs" in sobriety, one time almost losing control of my car. These blank-outs or sensory overload episodes are very troubling to me at present, as they frequently happen at large indoor playgrounds (ie; McDonalds or Discovery Zones) where the level of noise and activity, as well as my own concern for Oliver's safety, tends to send me into them. I really have to fight to keep myself present during these overloads, so I can perform my duty as Oliver's parent and protector. The response I get from those in my immediate circle is most distressing also, in that I am told I am merely being "negative", "childish" and the like. I find this feedback very frustrating because I can't fully control my reaction to overloads. They just happen.
My relationship with my son is strong, but has been deeply wounded during times of my sudden disappearances and other absences. I have done much to research and advocate for effective alternative treatments for his autism, epilepsy, celiac disease and other related problems. Although I have not been able to actually contribute financially to his well-being in a long time, I have made my contributions through this research and advocacy. Recently, through speaking with various people on Internet Relay Chat (mIRC) who themselves have high-functioning autism/aspergers syndrome, and through researching a wide variety of materials on the subject, I have begun to suspect that the odd assortment of characteristics and experiences I have described here are actual evidence that I myself am on the same spectrum as my son. I have tried to describe these experiences from as untainted and objective a point of view as possible, but know that many in my immediate community will scoff and suggest that I am highly misguided. I have been frequently accused of engaging in self-diagnosis, but would say that had anyone had the wherewithal to investigate an Aspergers DX for me, I and others might have been spared a lot of pain. I do not have insurance, so any professional DX is not a possibility at this time. Therefore, I have written this history, in hopes that someone, somewhere, will read it, and, if appropriate, give me the kind of feedback which no one else in my life has ever been willing to give me. Thanks for your time and patience in reading over this history. My email address is: [deleted] (if you care to respond)...
Note: This short autobiography has since lead Hillary to InLv where she found other people like her and a lot of understanding, which gave her a prospect of improving her life. Since Hillary is not currently residing at a home of her own, please contact the InLv listowner, Martijn Dekker at email@example.com, if you wish to contact Hillary. I will forward your message.