I Do Not Exist — On Being Female with Asperger’s Through the Movements
I do not exist. Or I am only starting to exist? I feel much of our self exists in the memories we have, and the memories we have left with others. In that regard, I have lived both a rich life and a poor life.
For the first thirteen years of my life, Asperger’s Syndrome Disorder (ASD) had not yet made it into the Diagnostics and Statistician’s Manual (DSM), the guide that provides definitive criteria for mental disorders within the United States. According to my mother, during the first grade, I would go under my desk and lie down. I said one perfectly formed word at two, “Ernie,” the name of my oldest brother. Then I did not speak again until I was four. I think those problem behaviors were quickly snuffed, however. There were other indications of something not entirely normal; strangers, family, were all the same to me. I gregariously talked at all of them.
My parents sent me to a therapist when I was in second grade because I was not forming relationships at a “peer normative” level, in addition to being diagnosed as having learning disabilities. I was not informed of why I was seeing this therapist, or why I was being given a pill every morning and afternoon. This pattern became pretty routine in my life: get taken out of school at some point during the day, once a week, for a few hours, go talk to some person, get taken back to school. I can’t say I was complaining about these arrangements. The person often had board games, and the social situation at school was unpleasant so I was happy enough to go without question. Such visits became a normal fixture in my life.
All of these things are common indicators for a future diagnosis of Asperger’s disorder. The disorder is marked by an inability to form relationships with people their own age, or anyone, really. Adults have been known to enjoy the educated monologues given by these “little professors,” the results of intense and narrow fixations uncharacteristic to their peers.
There are any number of traits found in Asperger’s diagnosed individuals that seem to be responsible for this situation. They include but are not limited to an inability to hold eye contact, or tendency to stare intensely, laughing and smiling at times deemed “inappropriate,” reciprocal dialog does not come naturally, difficulty filtering environmental stimuli from other (IE human) stimuli, not being well steeped in non verbal communications like body language, and unwritten understandings exchanged between those on the spectrum like suggesting it is getting late when the individual wants to get going. I know when I was little I could talk and talk about Greek mythology, which adults seemed to find charming. My peers? Clearly they were not interested in my one-sided repetition of stories, and 8 pm didn’t seem all that late to me.
When I was 14, the fourth edition of the Diagnostics and Statistician’s Manual was published, included with it was a new entreant; Aspeger’s Syndrome Disorder It was also around this time that I started becoming aware of just how isolated I was from my peers, perhaps because they HAD become crueler. I would start to cry when I would arrive home; it was becoming clear to me that peers were going out of their way to bother me. Methods deployed often involved a variety of objects being thrown at my head from behind, including but not limited to crumpled paper, pens, backpacks, basketballs, and the occasional chair. Prior to middle school I didn’t seem to have too much regard for my social isolation. I sat on the curb during recess, read books, sat at my desk, read books, went home, read books. Come seventh grade, one girl somehow fell from grace, socially. I saw where she had been, and where she now was; my position. She transferred to a different school within two weeks. If I ever was in Eden’s oblivion, my innocence had since faded.
It was at 17 that I was informally diagnosed with Asperger’s, by a psychiatrist I was seeing as an out-patient requirement from a psychiatric hospital discharge. The Doctor had just returned from a conference on the disorder, and saw many of the criteria in me. I was not informed of this diagnosis by my parents. At this point I existed in a depressed fog, and struggled with life. I was a barely functional entity. What is the purpose of school when you exist in a social vacuum? I had no friends. There was no imprint of myself left on others in a way meaningful to me. I could not get any traction with anyone to build off of, to get feedback on what I doing wrong. It wasn’t until I was twenty that I was given my first major foot hold; being told explicitly by someone how trying it could be to interact with me. It was the first time in my life someone had ever given me something so blunt, so constructive that I could recognize it. I internalized the tangible feedback immediately, rolled it around, and treasured this criticism that let me know I could be a difficult individual to get along with.
When I was 22, TIME magazine ran a piece on Autism, with a side column focusing on the lesser-known Asperger’s Syndrome Disorder. I read the panel, and started to see the familiar. Before I could address my parents about it, my mother asked me if I had seen that issue of TIME. I informed her that I had, and she told me of the diagnosis made five years before.
Since that day, learning to try to function in society, socially and professionally, has been the only full time job I have been able to hold down. Yet I am now more of a non-entity than ever.
In the brief history of ASD women accounted for 1 out 4 new diagnoses. Asperger’s was defined, in part, as being more prominent in men than it was in women. Some called it a disorder of extreme “male-ness.” Yet there are increasing numbers of articles popping up in the news that women are under-diagnosed. Speculatively, the belief seems to be this is because the manifestations are not entirely the same. It is unclear if this is because of a core difference between men and women; women being more ‘social creatures,’ or the self-fulfilling expectation that women are more social creatures. It could also be a dance between the two, but the research on the matter is scant.
Professionals on Asperger’s, as well as those in the Asperger’s community (family, diagnosed individuals, et al) are debating the nature of the condition’s definition. The definition is certainly an outside-looking-at, not outside-looking-in sort. Diagnostic criteria include, but are not limited to, “lack of desire to interact with peers,” “detached from feelings of others,” and “lack of social or emotional reciprocity.” These descriptions equate lacking the tools for “acceptable” social interactions with lack of desire, and ignore the many anecdotal reports of ASD individuals relating a painful sense of isolation and confusion regarding people’s negative reactions toward them (just as neurotypicals report confusion in interacting with them).
“So, you wanna go to prom with me?”
I think it was Ryan Fox who chose to approach me. That, or he was the puller of the short straw among his cohorts, who were standing 8 feet away. It was definitely him, that is the only name that comes to mind. Perhaps Zack W(hatever) was standing a couple feet, or Ryan H(who?), or both. The Mormon men at my school were handsome pricks. I wonder if they were as asexual as I was at that age, at least in practice.
I was confused. Distrusting of things that break pattern. My nature has me taking everything as truth, but here I am at school. People don’t talk to me at school. I do not detect sincerity (as if I could detect any non-verbal gesture at that age). Anyone talking to me is a deviation. I am called things. I forget what, besides ‘ogre’. But even then I understood being talked at vs. being talked to… sometimes. I challenge everything without knowing that is what I am doing. So, why is this person talking to me? What are his motivations? I want to understand this deviation from the norm.
“Why do you ask?” I slowly say…
“Well… I like you.”
I won’t pretend to remember if his friends could keep straight faces or not, or if Ryan did. I wouldn’t have noticed something like that. Regardless of my lack of social intelligence, I didn’t trust this deviation. It was not intuition, it never is. It is just cognition. I don’t look at people when I talk to them now. Back then I used to look out a window at birds, rain sliding down the glass, construction workers… or just anything beside the person I was interacting with. Currently I manage to keep my face turned less than 180 degrees away from the conversation partner, usually.
Eventually Fox appeared to tire of my guarded questioning; answering my need for things to make sense was probably too much effort. He said he had to go, and that he really wanted to go with me.
“Uh… huh.” was all I could utter.
I am sincere by reflex, not virtue. I have learned I can only be transparent and sincere, then hope for the best. Indeed, I am sincere to a fault. I gave Fox the benefit of the doubt. I was not surprised when I was not asked again.
I read over my old internet blogs, from when I was what some call a “camwhore;” an individual with a web journal and a webcam that broadcast implied nudity. Looking through my old webcam images I see now how crudely I imitated what I thought it was to be human, to be attractive. Really I just wanted a response, and I attempted to be provocative in pathetically ham-fisted manner. My picture is the bait I chose, to get anyone to interact with me virtually. I am young, attractive, skinnier than I thought I was at the time. I had no real reinforcement to make me think my self attractive in my “real life,” and a lot of enforcement to let me know that my lack of attractiveness was the least of my problems.
I don’t know the rules of the social game: A connection, a ball. I sit at a table in the mess hall tent on the last day of Burning Man; a one-week gathering of 50,000 alternative life livers in the Mojave desert. I see the exchanges of business cards. I see arms grabbed as someone walks by. “Wait, I really need to get you my info!” I just watch, wondering when I dropped the ball. Did I drop it? I believe more and more that the ball was never actually handled. Did I even see it handed to me? Did I throw it at someone when they were looking away, and take that as disinterest? I probably threw it too hard, and strangers don’t like playing hard ball.
It was at 28 that I got wind of another person from the wrong planet… I was back and forth exchanging with a professor of mine who I am confiding in, it seemed like the Master’s program I was in was going to eject me due to the manifestations of my disorder. Suddenly the importance that is the collapse of my life fades and I feel like I have found something that is too intriguing to not grab for, after all these years there is another person who may be a little bit ‘like me,’ whatever that means.
“That was very insightful of you, it really was.” He says, deploying a technique called active listening.
“Compliments aren’t what I need to hear. I know what I am good at.”
“She doesn’t like compliments either.”
“No, not particularly….”
“What does she say about them?”
“She says that they grate on her.”
She is a freelance technical writer, a mother of two children, married, six foot two. She values criticism over compliments. I want to know everything about her. I want to meet her. I want to see me. She is a client of my professor’s, who also offers counseling services. Again, I want to meet her. I cannot meet her. That would be unethical.
Writing this I think of all the dark fantasy pulp I used to read when I was younger; vampires, immortals, were-folk, and other quasi-glamorous outsiders and ronin, the rejected and desired, beings. These are beings with a secret that skirt the edges of society, passing for normal but will never really be accepted. On the peripherals of the non-conscious, people in society detect that these creatures are different, and not like their selves. From the vantage point of a reader, we empathize with their outsider status and want to join them. We want be like them, save them from their curse of solitude without changing their nature. We want to be the ones who are above ‘normal’ people; we want to be the special individual who recognizes the outsider, is accepted by them, and runs away with them.
ASD individuals do not have anywhere near as good a PR agent as these fantastical outsiders do. We are outsiders, me and this woman that my professor tells me he knows. To even hear about another person with ASD, another woman, no less, is new to me. This is the closest access I’ve ever had to another one of ‘my people,’ access to an individual well versed in someone ‘like me.’
I wrestle with the categorization. What does it even mean ‘like me’? The sensitivities and manifestations of ASD vary wildly. ASD should not have any meaningful salience as an identity; certainly when it comes to wanting to interact with other people with ASD. I wish I could just say “I fail at life,” I wish I could say that I don’t look people in the eyes because I’m uncomfortable around them. I wish I didn’t have this excuse that blurs the line between a flawed human being and a neuro-atypical. I wish people thought more like me. Actually, I wish people didn’t take for granted the degree to which they think like everyone else, and thus can coast by not having to learn the degree to which others are different, as well.
More than anything else, she wishes people realized that every human deserves to be ‘learned.’ They are compilations of experience, actions, reactions, chemistry, environment, factors beyond and within their power. Wishes are easy… and useless sentiments, when not being backed by action. So she decided to learn more about how ASD manifests in others.
I walk into the Asperger’s Association of New England meeting, as recommended by the psychologist I was seeing about the disorder. I won’t pretend that I am not curious to finally meet people “like me.” Walking in is… troubling. They do not look anything like me. There are eight people. Six are wearing sweaters, including the organizer. Two of the sweaters are cabled. One has a striking resemblance to a badly dressed Carrot Top, and is focused on his cell phone. It is interesting to see how separate they are from both their company and the environment in. Something just doesn’t feel right. You can still see the lines from where they are cut out of whatever environment they were transported from, before being copy and pasted into this room.
I couldn’t even begin to really assess my feelings. No, I’m not like those people. I don’t stand out like they do. I exist, integrated, on this plane of reality. Those are the first feelings, y’know “denial.” At that point I felt bad because I saw them exactly for who they were, they were people like me: Individuals who don’t quite fit in this world, and don’t know how to interact, who want to have the ability to express their selves, to fit in and function in society, to manifest the basic human want to give and receive affection and attention in an acceptable way.
As the meeting goes on it is clear that one of the individuals has particularly significant issues. Issues symptomatic of a lonely life spent untethered to society he was born into, or to other individuals. He continually brings the conversation to his life issues. Finally he blurts out “I only have my mother to trust, and now she isn’t there anymore!” He is shaking, weeping as gently as a man of his size can. Everyone is quiet. No one is looking at him, yet they are not avoiding him, either. Had you looked at a photo of the room five minutes ago, and the photo now, these people appear to be in the same exact place they are now. This man’s agony does not appear to affect them in the slightest. As for me? I am busy observing everyone else’s non-reactions. Yeah, I am home.
Leaving this group a woman asks me if I am coming back. I have learned that I should not give answers that I do not know, and that I have yet to process my feelings on the event. I answer that I do not know, she nods, we part ways. I do hope to see her again, and talk, and learn. I will be back.
Later that night I was relating the experience to a friend, what I felt, what I saw. As I was relating this my heart started beating harder and harder. Breathing became difficult, regardless of how much breath I took in it felt like I was pushing against a fist closing tightly around my lungs. Suddenly I stopped and said “I think I’m having a panic attack.” A later look up of the indicators of one, indeed… for the first time in my life I was experiencing a panic attack, seemingly triggered by my first up close encounter with people “like me.” It was my first and only panic attack. During the attack I tried to calm my self down, taking deep breaths, closing my eyes, leaning back into the arms of my friend. Breathing did not come any easier, my heart still seemed to be labouring through each pump. It wasn’t working. I asked my friend if I could rub his scalp, as focusing on others has always been very centering for me. I closed my eyes and let my fingers explore the subtle shape of his sutures. I lost my self, leading my body and mind to a more peaceful place.
I am not integrated in society, yet I am not swimming around in my own head either. I wanted to just exist within my self, as when I was in elementary school through high school. I cannot divine whether this was because the world appeared to be an incredibly horrible place with creatures that would go out of their way to bother me, or because books and art and gods and tarot cards were so much more pleasing. The cards did not give me the answer to that question; maybe that was because I didn’t ask them to. Regardless, maybe it was having four siblings, maybe it was the refusal of people to leave me alone… Maybe it was the fact that people also put out sensory stimuli, as the wind rustled leaves or crossing signs ticked. People talked, people moved, people stimulated. I cannot live within myself, even if I want to.
I am left feeling like a shade who exists between two realities, not immersed or corporeally existing fully in either. In the normal world I have never been integrated in normal society; I survived, barely. My high school GPA was a 1.43, and that was with a fair amount of assistance and exceptions. In 1997 I was hospitalized for self-harm and depression. I barely graduated, and would not have if my father had not joined the PTA in no small part to better hustle resources to help me graduate. I first attended community college in Spring, 2000; two transfers and six years later I finished university. My college GPA was a 3.24 upon graduation.
After college, at nearly 26, I went off to Taiwan to get a job teaching English. I had spent my previous summer in the jungles of northern Taiwan, working at a fledgling summer camp. I was left with the impression that it was pretty easy to strut right into the city and get a job teaching English, being a bairen (white person). It was not so easy, and I never got regular employment Thankfully I was paying about 60 dollars a month for a couch in an apartment, so I was not hemorrhaging money. Still, it was untenable.
While there I did apply to graduate school for Mental Health Counseling, and got in. So I left Asia after several months, and decided to try to find a real job back in the states… something with numbers and minimal human interaction. Ideally I would get a job, then decide if graduate school was for me or not. I got some interviews. I got no job. I pulled the cord and jumped to Boston to start grad school. One year later I was informed by my advisor that my program was not “the best fit” for me. I was left 30k in debt and no closer to having a career path. In the wake of this failure, I got some interviews. I got no job. The assumption that the parachute would land me not just safely but somewhere safe was not correct.
If there is one thing I am good at, it is failing. I fail gracefully. I am failing at life, with a fantastic attitude. It has been the most delightful failing and period of growth and introverted exploration as well as global exploration. I have spanned the width of the globe, got into the graduate program (and yes, strongly encouraged to drop out). In the program we had to do journals where we were supposed to record our “unhealthy thoughts,” like “Fuck you for cutting me off!” Then we were supposed to post a “healthy thought,” we should have had that fit within the framework of the current counseling theory. Like “I am glad I am not in such a hurry,” or “I am not responsible for the actions of others.” Unfortunately, I already thought those latter things. I got Ds on these journals because apparently I put the healthy thought, under the “initial reaction thought” category. Another professor told me I sounded arrogant. I was told that I spoke as if my word were absolute truth. That got me kicked off the research team. Really it is the fact that I don’t think I know shit. If I know it, everyone must know it, right? “Really? You don’t know about the horrible details of the floral industry, from inefficient use of resources to worker exposure to unsafe levels of pesticides? Huh… weird.” So much information is gathered through social osmosis, which individuals with Asperger’s cannot take in. While others felt like they may be on the wrong page, I often feel like I am on a different book entirely.
I am a supporting character in a Chuck Palahniuk novel, and it pains me to say that. Chuck loves failures. There are those that are rejected by everyone and repress it by pretending to believe in religion, thereby being superior to their rejectors. There are well intentioned mouth-breathers who keep a stiff upper lip no matter how much humiliation they endure. And then there is me. Most people just don’t like me. The reasons I am privy to are always vague. Life has mercy; I know am very good at failing, and secure in this. I survive, surprisingly comfortably, from the the work my parents give me and, unhindered by societal concepts of normalcy, freely navigating the tricks one can perform that teeter on the edge prostitution. Still, ultimately I am “financially insolvent,” in no small part because I talk like a Chuck Palahniuk narrator. I have not found my place in the world, and graceful failure is getting trying. Were this a Palahniuk novel, I would launch off into some crazy adventure right about now… which I did for a while, last year. A summer of midnight skinny dipping at Walden Pond, dodging cops, throwing underground eating club nights, dumpster diving, trick turning, getting cut and burned in kitchens as I made food for the food-insecure. It wrapped up fantastically, living among fire spinners and alternative life-livers for a week in the Black Rock desert.
But this isn’t a novel… This is “real world.” And summers don’t last forever.
“So, what happens to most of them?”
I ask my psychologist, who specializes in autistic-spectrum individuals, on their fates.
“Ooh, it varies. Some, some can never conquer their inabilities and remain ‘lost.’ Unable to ever be both organized, and find a job that they can maintain. A few manage to get and maintain employment, and even find a woman that will be patient enough…”
I interrupt her. “You say ‘a woman’, which strongly implies that…” It is clear what her speech implied.
“Well, yes. It is true that it really is made up of men…”
The novel that never was has ended. The fate of the protagonist is undecided. I am supposed to grow up now. At least, I’ll try.