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

527: Once More

Once more
Some happenstance
Of circumstance
Everything circumvents
Transparent facades
Of turbulence

Familiar and foreign
Anomaly of contrasts
Birthed in barren land
Where the seed of now
Searches for rooting-ground

Bedding down she finds no relief
Disappointed she flutters
As butterfly, to higher lands
Where chance planting might arise
Left
Shattered by the nonexistence

Myself here
Transpired
Greatest works
Long past expired
A lathering of doubt
Pulling up from the foundation
Taking in what are last reserves

Core-dripping real
Wavering self-confidence
Finite point
Of seeming happiness
Drowned out
By the bottom realm
Once more

518: The Barbs

I can sense fear, well enough. It doesn’t come in needle form. It isn’t injected by an outside source. There is no fluid that enters through a prick or an invasive probing. Fear bypasses exterior layers, rooting from within, expanding and growing as seedlings do. And I am but host to the cyclic process.

For most of my days, I wasn’t aware of the fear inside. Even as I was always anxious and scared, I couldn’t readily identify my emotions of fright, basically because I was fright. Even as new fear entered, there was no obvious change inside of me. There was no alarm system in place. Fear was my normal. If there were trespasses against me, there was no way to tell, because I was already overcrowded inside; one more pair of prodding footsteps made no difference to a well-established colony of thousands. Ironically, in a state of fear-equilibrium, I felt perpetually balanced.

In regards to the fear I housed inside, I don’t know when I started to shift. It was sometime between the start of my public writings and the times I had delved deeply into spiritual studies. I’d been searching for answers. And something had clicked. Something inside of me. And in those moments the fear became recognizable. Wherein it had been invisible before, this fear now had a voice and had taken form. It arrived aware of itself, pushing up and growing in a making-room-for-more manner.

The fear was real then. It always had been, but now it was set outside the shadows and staring down at me. I could feel it everywhere, a monstrosity. I knew of it, too, as if an old familiar friend had reappeared for fellowship. Foe, he was, true, but more so a companion, in the way he meandered and made himself at home, opening and closing whatever compartment he fancied.

Seeing him move this way, amongst the others, amongst the piles of pain, in the conglomeration of fear, baffled me. A visibility granted where once there had been utter blindness, seemed miracle. In this way, fear itself, in manifestation, became an element of transformation. In this way, fear was part of my breaking and making.
With my new awareness my body was liken to a musical organ, each key being pounded in by some unknown trigger, and in response piping out this obnoxious vibration, the sounds penetrating my interior and leaching out of the exterior: a lost song let out into the open.

Wherein before I might have survived in a state of saturated fear, my stagnation birthed through a tangible blindness, here, in this new awareness of continual pounding, I could not live. In response to the discomfort my instinctual nature took over. And at a subconscious level I began the process of sorting through and categorizing the discomfort. Later, again, quite instinctually, I established a way to eradicate the unwanted tenants. I’d rely on my own body. Recognizing that I was contaminated by fear, I would remove each and every cause for pain, my body an informant, verbalizing through careful unspoken word.

It whispered its tellings,
listen, stomach would say, I am tight,
listen, heart would say, I am pounding,
listen, hands would say, I am clenched.

And from here, the whys came forth. Stomach was sad from the way the stranger had frowned. Heart was upset in the way the word ‘stupid’ reminded him of the past. Hands were scared by the loud boom of the car. And I listened. Day after day, I listened. Until, with much patience and practice, I began to hear less and less. Now, new spaces opened where none had existed before. Now when a stranger appeared, when he rooted himself in me, the fear was no longer cloaked by the masses. Now when the fear came, it came with a loud blow into an empty room. Now when fear arrived I knew immediately.

The tables had turned. Instead of housing the fears that had used me for room and board for decades, now I removed the newbies, the ones that had hitchhiked in hopes of permanent residency. Now I gathered the barbs and released them—their freedom, my freedom.

509: There Needs to be A Name

There needs to be a name
There needs to be a name for what happens
Because always with happiness
Comes this shadow
Some dark figure behind closed doors

When happy rings
I open
I envelop
I take in the colors, the smells, and desires
I become that which is: calm, giddy, and hope-filled
The world mine, for a moment
Free
Anxiety lifted
Somewhat ‘normal’
And yet…
And yet…
And yet…

The Shadow
There—waiting, watching, wanting
To devour

I am these two: Split
Yes, split
I am momentarily happy, and I am perpetually sad
Half sees the other as weak, dismal, and pathetic
Half sees the other as over-bearing, tiring and exhaustive
Melancholic one, concurs
Happy sweeps up the messes and sets things straight

Some other piece, long forgotten
Wants nothing more
Than to crawl into a space of no halves
No me’s
Where there is emptiness
Tranquility
And the absence of extremes

Somewhere between
Over-exertion
And under-confidence
I wobble, this lonelier non-version
Frightened by the chime of happiness

~ Everyday Aspergers

507: Removing Warts… The Nasty Aspie Triggers

I am triggered by a lot. You name it, and it can feasibly trigger me.

The weather: Thoughts of the past associated with specific temperature, events and schedule changed because of weather or pending weather, fatigue/pain triggered, ramifications of our treatment of global environment and climatic events as a result, and on and on and on.

Digesting the food on my plate: Poor suffering milk, a byproduct of suffering cow, and the pain-hormones involved. Body affected by poisons, chemicals, over abundance or lack of nutrients, allergic reactions, digestive system triggered. Fight or flight biological response uncontrolled by the implementation of Cognitive Behavior techniques. Thanks but no thanks.

An actor’s line in a movie: Brings back a particular emotional event in life…and ain’t all things emotional for me??? Rhetorical question, followed by giddy applause of distaste in my own reactions.

A particular change in bodily appearance, function, ability, sensation, weight, signs of age: Note to self… avoid mirror and stop examining skin with magnifying glass. I am not vain, at least I hope not, just overly-aware of everything. I am so sensitive, I have gotten to the point I can tell what mineral or nutrient I am low on, e.g., numb toe equals low on magnesium, twitchy eye equals needing potassium, heart rate up equals time for some more sodium, etc. etc. etc. And don’t get me started on hormone fluctuations. Mostly, I am disturbed by warts (I have one tiny one), new moles, age spots, blubber and sags, and those weird, icky-lined wrinkles below my neck on my chest.

An offhand, unremarkable (to most) comment aimed kind of at me, at least I assume so: I can spend hours wondering what one word I picked out of a conversation could possibly mean, and from there wonder why I spend so much of my time picking apart conversations, and then psychoanalyze Aspergers in general, and then compare my communication skills to anyone in my circle of humans I have ever encountered; not a fun way to whittle away the hours, but nonetheless HAPPENING, regardless. Thank you meaningful professionals, but if you ain’t Aspie, you ain’t Aspie and you have NO possible way of understanding the makings of my mind. No matter how much you study a gorilla, you won’t understand how a gorilla thinks. And, yes, indeed, I think myself a different species. Have you met my people?

A joke, a poster, a political comment, a personal comment, a slogan, a lyric, a quote, a song: I can pick apart anything and make connections. Sometimes the connections and contradictory in nature, often really, and they leave me baffled, confused, and feeling entirely alone on this planet. Sometimes I am certain this is hell.

A missed connection, missed meetings, cancellations, no shows, last-minute changes, and the like: These leave me wallowing in self-pity, and then more self-pity piled on for allowing myself to have self-pity, and so on. You get the mirrored-picture. And then, to make it worse, I try to be mad, to understand the concept of mad, and then in turn blame myself for not being able to hold a grudge or stay angry. I then visualize people when they are angry, friends, acquaintances, loved ones, various movie actors, strangers, and the like, and I try to emulate the emotion. Then I feel guilty for trying, in other words ‘faking,’ because faking is lying, and I want to be truthful. And I feel guilty for trying to be mad?? Who does that? I get trapped in a whirlwind of how I should react to disappointment, and then punish myself for allowing myself to feel disappointed, because isn’t disappointment ego-based? From here I wonder where to go for help because I have tried it all, from Priest to Psychiatrist, and no one, absolutely no one, comes close to understanding me, beyond me, and even my understanding is warped, at high-speed, to boot!

Broken promises: This being the most painful. The world is filled with uncertainties, another major trigger, and they are everywhere, but the hurt is intolerable when someone doesn’t follow through with their word, I don’t feel bad as a result of judging the person, or of even having had housed expectation, and I am not mad, I am just reminded of the terrible uncertainty and unknowns of the world I live in; and that I basically can count on no one but myself, but then I can’t count on messy-me either; and this reminder (trigger) terrifies me and makes me immobile, couch-bound, and affects my pain condition, depression, and sometimes thoughts of leaving the world; not that I could leave, I don’t think, because I wouldn’t want to hurt anyone; and then the chain of thoughts begin that I am selfish to think of leaving anyone behind in this place, then thoughts of how the human condition is a suffering condition… yes, seemingly bleak pessimism, I recognize this, but it’s not, it’s TRIGGERS.

Being critiqued, criticized, put in my place, hearing unsolicited advice, being scolded, scorned, etc.: You get the picture. We both know I am not perfect. But did you know that I see all my flaws at multiple deep levels all fricken day long. I am likely the most self-aware crackerjack you will ever, ever meet, (unless you happen to be Aspie, too, then it’s a two-way tie), and I have tattooed my imperfections on my soul, and greet them minute-by-minute everyday. Generally, I don’t particularly like being human; I can’t tolerate the lurching selfishness, the ways in which people possess and take and haunt. It all confuses and compels me, and at the same time I recognize I am human, and that sucks. Critique me and I think I am more alone than ever. How could someone not know I was hyper-sensitive already, and keen on my own flaws? And then, to top that, I start to think that perhaps I am over-sensitive to mask a submerged and buried dark-shadow rage and that I have an innate inbred fear of anger. Until I sit it out and re-realize that NOPE, I just don’t get anger, more than a passing defense mechanism or emotional response. I don’t know it, more than a passerby. He waves, he punches me in the gut, and he leaves. That’s about it.

Setting myself up: There are certain triggers I know will get me bad, keep me bedridden, or at the very least cause me to be lost in thought for hours, and yet I repeat certain behaviors that set me up for certain triggers. As if I don’t learn. I am taking inventory. I know what hurts. I know what creates chaos in my mind, but at the same time I carry this everlasting hope that this time it will be different. I have this blind eye to people. I think they will change. I think things have to change. I think everyone must transition at the high-speed, everyone must have similar depth, heart, and soul. But they don’t. I just can’t seem to wrap my brain around that concept.