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