Balancing the World; thoughts on leadership and autism

My entire life, like many on the autism spectrum, I have oftentimes been misjudged, misinterpreted, and misunderstood. When I finally, after over four decades on this earth, located individuals with like minds, I was overcome with mixed emotions. I’d finally found “my people” and at the same time lost a piece of myself that I thought was extremely different. Lost in the sense that I came to realize, after conversing with other autistics, that I wasn’t so different and “unique” after all. However, this was okay—extremely okay. Finding a home base community in which I was at last understood, accepted, and supported far out weighed any sense of loss of elements of self.

Four-plus years later, after an outpour of online writing, and I am navigating another aspect of my journey. I am entering another unfamiliar zone—a place of no predictability. I am facing a wide-open space of new people and new encounters. In addition, I am trying my best to maneuver in rarely frequented territory: that of an autistic leader.

Autism, in my case Asperger’s Syndrome, comes in all shapes and sizes, multiple colors of the rainbow. It is truly a spectrum. With autism, there are the typical “gifts” and tribulations. For me, the beneficial attributes of my ASD are profound empathy and insight, prolific writing, poetry, and the ability to put into words my suffering in a way others can understand. In this way, I am able to make the loneliness of some less of a burden, and I have been able to serve as a sort of gateway into a supportive community of other autistics. A community in which we find ourselves in one another. I don’t say this lightly. There have been streams of individuals filtering through the pages of my blogs and social media pages to essentially say that they now have at last found hope—and some a reason to not end their life. I don’t say this to brag, either. Those that have known me, know my heart, and it is for them I speak.

The trouble today is not so much my tribulations related to ASD, such as peak moments of heightened anxiety, bombardments of feelings that at first look are hard to decipher, the jarring reminders every hour of my waking day that I am somehow not built like most others, the intense heartache and lack of breath from searing pangs of empathy, and the worries brought on by my minds ability to steer off into complex, multi-level corridors of discovery. No, it’s not so much in that—though “that” still consumes me. More over, it is this new place I find myself, in where I am exposed.

I am a natural born leader; I always have been, despite my own qualms and misgivings. Despite my protest. Despite my quirks and challenges. Overall, I tend to end up as a voice of some sort–usually for the downcast or underdog. And it’s not amongst my favorite of tasks—this speaking up for myself and others. Indeed, it would be fair to say, I dread many moments beyond the comfort of my home. Still, there are mornings of great hope and gratitude for my ability to reach out, and with this comes waves of great peace; but there, on the other end of the pendulum, is the bareness of naked vulnerability, the removal of shield, the entranceway for stinging spears. There, in the darker zone, lives my fear and weakness, and the very brittle fight to survive exposure. For I’m not the average person, I’m not made the way of the masses. I am very much, despite where I stand, still autistic.

I am hurt daily, by my own accord, by the acceptance of others’ truths as mine. By the energy it takes to abstract and remove everything that doesn’t ring true to me. And to then wade through the muck of others’ ideas, input, feelings, insights—and on an on—to hopefully decipher what is valid and necessary at this time. I am not only balancing myself, which those on the spectrum readily know is a gallant effort, I am also balancing everyone within my reach. In this way, it is hard to be outside exposed in the “real” world.

It is especially challenging when outsiders (who do not know me and often see a reflection of their own self) try to pin their tail of identity onto me. I feel smothered, unrecognized, and brought back to the bastardized halls of my high school years. Brought back to the pettiness, the name-calling, the finger pointing, and relive the nightmares over again. It is equally difficult when another, particularly in the autistic community, starts proclaiming how I should tailor my words to suit their needs—the current societal trends—the current “right way.” To see this conglomeration of “do-gooders” with supposed good intention in mind, attempt to steer me into what is the most well accepted approach of the day is excruciatingly exhausting.

I can only be so much. I can only do so much. And I don’t understand why my own tribe would not see this. They forget that I am autistic. They forget how dreadfully scary this is. How frightening to attempt to build a bridge from the autistic world to the non-autistic world, and to appear “normal” enough in the typical arena to be heard and listened to, and “autistic” enough to be trusted in my own community. It is a fine balancing act in which I am continually on a high wire with a long heavy pole. Constantly pushed off balance while attempting to get to the other side to the unknown. I am walking step-by-step toward something that is neither a goal nor destiny, but rather a calling. I am serving, I am giving, I am loving, I am supporting, I am being my all. Yet no matter how I struggle, no matter where I step, to some, as is this world—it is never enough.

 

(I normally post at my blog Everyday Aspie, but my WordPress options were not working accurately there today.)

 

Sam’s book Everyday Aspergers is now available internationally on Amazon.

More information can be found at her company: myspectrumsuite.com

298: The Weight of Me

I don’t understand my body, what it looks like, what others see me as, how I am supposed to look, what is expected, what is healthy, what is normal, what is standard, what is right.

There is a layering of problems associated with my body image.

1) No Norm Exists

No norms exist related to body image except what society, or more so the media and advertisement companies and other corporations want me to buy into. There is a belief system that varies from year to year, dangled in front of me. I don’t want to be a fish: a hungry guppy rising up to take hold of some enticing treat that will likely gorge me, stab me, break me, or result in me being sliced open, gutted, and fried to a crisp. Nor do I want to see the bait. But everywhere this bait floats about, the hook hidden and waiting to damage.

2) I Have a Degree of Body Blindness

It is hard for me to see myself as a whole, and to see others as a whole. I can see when someone has some extra padding, a few extra pounds beyond this societal standard of ideal weight, but I can’t hold the whole of someone’s image in my mind. If I was asked to sketch a body, I could not. Everything would be out of proportion, including the length of the arms and legs, the scale of the neck, and the angles of the face. Everything I take in is somehow mutated and rearranged, so that what I recall in my mind’s eye could likely be a Vincent Van Gogh painting. I cannot see my own body, clearly, as well. I rely too heavily on the eye of a camera, only to have discovered as of late that the camera is not an adequate portrayal of my weight, as the aspects of my clothing, the way I am standing, the angle of the camera, the type of camera, the lighting, and even my mood, posture, and expression, affect the end result (the photo image).

I’ve studied myself in photos for months, and still am baffled by what I look like; and how I look to myself, changes each and every time I glance at my reflection. And even the reflections are deceiving; how I appear in the rearview mirror, the glass of a window, or from one bathroom mirror to the next, always shifts, and I find a new person staring back at me, reversed and bewildered. I am left to wonder where the real me exists. In front of the full length mirror I stand, turning and processing, in awe of the stranger standing there. Photos will generally depress me, as they do not seem to represent who I see myself as. And worse, I can’t really see myself at all in form. I am like an unformed mass, shifting as the flowers and plants vary with the seasons. I cannot find myself, as hard as I seek, at least my outside self; for I seem as mysterious as the birth of the universe, as infinite, and as ever-changing.

3) I latch on to rules and examples of beauty even though the societal norm of perfection is unattainable

I have been brainwashed. I have been bombarded with images of what I should look like. I have been told, in the form of photos, movies, sitcoms, commercials, advertisements, magazine covers, billboards, department store displays, peers’ behavior, and various fix-yourself-now articles, that I am somehow wrong and in need of repair. In addition, I have been informed that if I go through various steps, I will then be adequate, and once adequate I shall be accepted, loved, and adored. I have seen this “beauty” scenario unfold and be reinforced when I was a teenager; seen how the people around me responded and took note of me if I was dressed the “right” way, if my hair was “good,” if my makeup enhancing, my body shapely. I have seen the attention that the socially accepted “beauty” brings. I have also seen and felt how empty the experience of acceptance based on exterior beauty alone can be, seen how fickle and cruel the shallow admiration is. I have felt like a tree adorned for the holidays, sparkly and the center of attention, only to be later tossed to the side of the road waiting my fate. But still, I have this brain, some type of organizational system working inside of me that searches for the “rules” the standards, the way to exist on this planet and in this society. I think, deep within, that if I can find the right path, I will fit in. Yet, I am faced with an unhealthy path; one that leads to imperfection after imperfection, and demands my money, and worse my soul.

4) I exist at one extreme or another

The place of middle ground in all areas of my existence is foreign to me; as hard as I study and try to get there, I cannot. My mind works in extremes. I am generally high or low, calm or hyper, still or moving, cautious or daring, charming or a pain in the butt, loving or stand-offish. The in between space baffles me, and analysis of the concept of middle ground leaves me stranded in thought, wondering why I cannot be “that way,” the way of the masses, the way of the easy life.

Though I try hard to find balance, I continually find myself swinging on the spectrum of intensity, the volume of my every minute, high or low; the intensity affected by the tides, the planets, the food I take in, the music surrounding, the sounds, the energy of other people, the thoughts roaming within, the expectations placed on myself, the voice that rises and interrupts my doing, the inconsistency of trying to be, and the varying degrees of living in the moment.

I am unsettled. Every inch of me unsettled. And like the shifting of my body image in my mind’s eye, my state of being shifts. My efforts are circumvented by the infectious factors all about me. In being this way, I take on tasks with a high degree of interest or I give a task no regard whatsoever. This, this taking on of tasks, applies to the way I manage the weight of my physical body. I can be extreme for months with a diet, avoiding certain fattening and bloating foods, avoiding sugar, avoiding all junk food, avoiding grains, etc. But I can only exist in the state of extreme for so long, and then I break, and where I had felt to be in a constant state of fathom, I now emerge into a state of feast, starving and deprived. My weight fluctuates depending upon where my pendulum of intensity exists. I am at the mercy of my passion or lack of interest.

5) I feel better at my ideal weight, but the definition of my ideal weight varies depending on source.

I would like to say that I am comfortable in my own skin, but I am not. I have latched onto an ideal number for my weight based on how my clothes fit and how I appear in some photos. Not all photos, because even my ideal weight looks odd in most images. To me, when observing myself, I can appear obese and bloated, even though I am told I am skinny. Ideal weight is listed and available on medical charts. But this weight standard is obsolete. I have always been much heavier in scale number than I appear in form. I was stick-skinny in high school, skinnier than most everyone, but I was heavier on the scale. I am 5’ 4” and in the last several months average about 139 pounds. This is a high weight for some people, but for me I can fit into size 4 or size 6 pants. For me this is thin. At 137 I start to appear gaunt and unhealthy. I know that I appear best at 139 pounds even though this amount weight is repeatedly reinforced in movies, magazine articles, and charts as “heavy.”

I am confused by contradictory data, and contradictory data is everywhere. There are sources that say it is good to go into menopause with weight around the belly, and some fat on the bones, as this decreases your chances of bone loss. I have read it is natural and healthy to have some excess body weight as one approaches their fifties; yet so many studies warn of various diseases and fatalities if the weight is not monitored and controlled. I look back at paintings from the centuries before, and think the voluptuous women look lovely. I look at the stick-skinny, starving-themselves women, and think they look stern and unhappy, rigid and angry. I look at myself and don’t know what I think, beyond a woman struggling to find the “norm” and what is “right,” in a world with variables and contradictions.

I latch onto numbers. So I latch onto 139 pounds as my standard, as my ideal, as my place to be. But I have a slow metabolism. I can eat one meal a day and gain weight. Is my esteem wrapped up in my weight? I don’t think so. I think my esteem is wrapped up in the unattainable image I think I am supposed to attain: an image I cannot see in my mind’s eye, an image that is deceptive, contradictory, and unachievable. I am not wrapped up in looking skinny or attractive enough, I am wrapped up in trying to figure out what I look like to begin with, how to keep a number on the scale from fluctuating so I feel stable in a very non-stagnant world.

I just want to fit in, or more so blend in. I don’t want to stand out for a perceived “negative” attribute; I don’t want to be unhealthy; I don’t what to exhibit gluttony; I don’t want to appear “wrong.” All these “norms” and expectations I set upon myself. And I don’t know how to turn the voice of expectation off. How to just be with me. How to just love me. How to see I am not this vessel that ages daily, slowly deteriorating towards death.

6) I set different standards on myself than other people.

I logically can tell myself that I do not care what others look like, and this is the truth. My dearest friends can be any weight, and they are just as lovely and beautiful to me. I don’t take notice of people’s weight as much as their eyes or their kindness. I love all shapes and sizes, and find attributes that are unique and different to be interesting and attractive. I like a woman with a little fat on her, personally. And if I were a man, or a person attracted to women in a physical way, I would choose someone for their inner beauty and character, not for their weight. Weight would not be a factor at all. And as a female attracted to men, I am not attracted to the weight or fitness-level of a man. At this point in my life, I could be in a romantic relationship (if I wasn’t married, of course) with any shape or size, any ethnicity, and any age (within reason).

The outside exterior of another, male or female, friend or stranger, no longer affects me like it did in previous years. I see the collective person: their soul, energy, purpose, drive, love, heart, etc. all interwoven to produce a beauty. Yet, I cannot do this with my own self. Make myself see my collective beauty.

I know I am lovely inside. I know I have a huge heart, massive amounts of sensitivity, compassion, integrity, honor, and love, but yet, when I evaluate my own beauty I go back to this fictitious number on the scale.

7) I don’t know where to turn for help.

If I let go of my rigid goal of maintaining a certain weight, I would gain weight. While I might be able to learn to feel comfortable in my own skin when I am heavier than now, I face other complications as I gain weight. When I add on pounds my chronic fatigue and chronic pain increases, exercise becomes harder, and just moving in general is burdensome. When I gain weight I do not recognize myself, or rather I recognize myself even less, and I am confused when I see my image.

However, while striving to maintain my weight, I put unyielding pressure on myself of what to eat and what not to eat. I punish myself for cheating. And for me cheating is having organic cheese puffs instead of organic red peppers with my humus. I tell myself terrible messages, such as I don’t have willpower, I am going to gain weight and no one will love me if I am not attractive, I will forever be alone, and on and on.

In addition, food affects me drastically. I cannot eat anything, beyond pure protein, without having instant pain and fatigue. So, I often go most of the day without eating, because as soon as I eat I have a reaction, in that extreme fatigue sets in coupled with pain in my muscles and joints. I have tried many different diets, food combinations, etc. for many years, to no avail. I have come to the conclusion that I am allergic to earth food, and that’s just the way it goes. For me eating fruits, nuts, and vegetables all day is the best, but I crave more.

There aren’t any answers out there. I’ve searched and searched; I’ve waited. I’ve dug deep inside. I’ve meditated, medicated, supplemented, detoxed, etc. I finally reached the point where I believe the best thing for me to do is to stop analyzing my diet and being so extreme. But that’s what scares me; for when I let go, the weight comes back, and so does the resulting painful effects. I’m searching for that state of limbo, where I can just exist without effort, without constantly trying to rebalance, where I can just be. But even the searching hurts.

8) I find my security in the number on the scale.

You could tell me I’m lovely. For a short while I would bask in your compliment. But then, the words you gave to me would fade away, and within a day, or sometimes hours, I would no longer feel your compliment. Instead I would wonder once again if I was truly too ugly for this world. I know this sounds absurd, but this is the untruth that plays out in my mind. I do not understand what I look like, and thusly do not understand how you perceive me. And everyone perceives me differently based on their own life experience and developed tastes and biases. Everywhere I go, I know if someone takes note of me, I am being evaluated. And I dislike that invasion and aspect of being in society.

I want to be seen as the interior me, but am forced to be first presented dressed in this physical essence. In some ways my weight is the only thing that I can control about my appearance, the only thing I can keep the same when all about me is shifting. The rest of me, beyond the finite number on a scale, I cannot see or determine. I cannot find the truth of what I am on the exterior, and so the only security and constant I can return to is the number on a scale. I have a lot of dependence on the number.

It’s not that I want to control my weight; it’s that I want to control some semblance of my existence. I want to understand my physical being, even if it’s only one small aspect, one three digit number.

Everything changes so much in my world from moment to moment, from thought to thought, and event to event, that numbers have been my security blanket for years. So, yes, the number on the scale is my enemy or friend. As it climbs I fear the future, and as it decreases towards the “ideal” I know I am moving forward towards a part of who I was or am. The further I am away from the number on the scale that I have decided is “the number,” the further I am away from my own sense of self.

I long to find my security for my physical self somewhere beyond a number and beyond an image. But I often wonder, if I cannot view this illusion of self, then how can I be secure. Rather it is acceptance I seek. Acceptance of the unknown and the release of my dependence on outsiders to quantify who I am. An acceptance in the knowing that although I am invisible in regards to my appearance to physical self, I am solid in my understanding of spirit.