I share the same camp with a mind that goes out of control in its quest to search. It is like my mind goes bungy jumping without my permission. It sees an avenue of escape and jumps. Boing! And I am left somewhere in between the launch pad and the landing ground, midstream in the air, flailing, and screaming for rescue. My mind literally pours into multiple dimensions of jumping thoughts. The Energizer bunny overdosed on caffeine skydiving without a parachute.
And what does my mind pour? Everything. All the data I have collected from being. Everything I have taken note of during my waking and sleeping hours: each person, each face, each smell, each droplet taken in by the senses, and even the liquid data beyond the common senses. Everything I have ever learned, seen, contemplated, deduced—all brought to the same over-crowded table for dinner, and each wanting a turn at conversation. It’s loud. It’s annoying. And it’s uninvited company.
I am sensitive to my world like none can understand, unless born into the view I see; unless transmitted in completion into the suit I wear, and forced to walk as I walk.
Being on the spectrum which includes neurological differences leads to challenges that the typical person just doesn’t seem to grasp. And how could he? I mean for the most part we, as a collective, we look ‘normal.’ In fact, many of us are quite successful at one endeavor or another, high-achievers and/or proficient in a vocation or skill. In fact, many of us are quite charming despite our peculiarities. And most of us aren’t ‘handicapped’ on the outside at all. Most of our disabilities, if not all, beyond our clumsiness, are entirely invisible.
The typical person usually doesn’t understand how the multiple traits of Aspergers, sometimes reaching a hundred in totality, quickly add up. While it is true one singular trait taken out of the pool, such as dysgraphia or dyslexia, might be manageable with effort, when one takes into account the multiple traits all combined and compacting one person, one can more easily theorize how overwhelming the condition can be.
Still from an outsider’s view, we really ought not have too much to complain about. I mean everyone suffers. But that’s exactly the point! We suffer like all humans but the suffering is accentuated and multiplied at every level. We are experiencing life at hyper-speed in hyper-sensory overload. And we take in life to the tenth-degree compared to the average person. We also take in other people’s crap! We feel their pain and their suffering. In truth, sometimes we can’t tell if we are feeling our own stuff or someone else’s pain. And if that weren’t confusing enough, we feel profound empathy for the suffering all around us.
But not OUR OWN suffering. We beat ourselves up about our own suffering because we believe we should know better, be stronger, be wiser, and have control. We hate that we are sad. We hate that we are depressed. We hate that we are again in a place of discomfort.
But the most extreme confusion is not knowing when to stop the thoughts. We can’t tell which thoughts are actually doing us some degree of ‘good’ and which of our thoughts are merely a result of our minds dive-bombing off a bridge. And to top that, we can’t even tell what is ‘good’ and what is ‘bad.’ Everything seems to be able to prove its own point and hold its own ground. Except us of course. As we are in a constant free fall.
Yet, from an outsider’s view, we complain too often; we are self-focused; we pity ourselves; and let us not forget that we take life too seriously.
The key word in all this being: outsider.
If we wore our traits on the outside, things might look a bit different to the outsider. If all the challenges were dangling off our bodies, perhaps blinking words or metaphors. If all the pictures in our minds were on display, if all the thoughts trumpeting, if all the pain made concrete that was brought on from sensory overload, if all the mixed emotions could stampede in parade fashion, if all the questions could be bull-horned in an amphitheater, if each and every one of the close to one hundred traits could be corralled and put on display, maybe, just maybe, the outsider could grasp the enormity of what we experience in simply being.
For us life itself is a challenge. Forget the other stuff, e.g., Maslow’s hierarchy, relationships, health, and finances. For us the challenge is just being alive another day—just opening our eyes and getting out of bed. Give us an hour and we’ve lived a day. Give us a day and we’ve lived over a year. We are exhausted, and yet we carry on. We are terrified, yet we smile. We are confused, yet we forge through. We are lonely, yet we offer support.
We are—and some days that in and of itself is enough to make us not want to be.
I have a runaway brain. I have a machine inside of me that knows how to twist reality, so I never am quite certain of my own emotional state. I know fear. I know love. And the rest is a jumbled mess that seems illusion.
My mental and emotional state play teeter-totter all day long. I have no bearings. I have no idea how I will respond to the next over abundance of stimuli or the next trigger. I have no clue what pattern my brain will choose to latch onto next, what puzzle it will try to solve, or how it will manifest some data as proof of why I should be fearful. I am watching myself constantly, and knowing my brain is its own entity, and knowing I have a heightened awareness to everything and everyone I will come into contact with, and everything and everyone I will think about.
Having Aspergers is like jumping into a river and not only feeling the cold stinging water, but feeling everything that leads to the water’s arrival and knowing everything that might feasibly come after the arrival. It’s time travel in thought, all at once, why boggled down with emotions that make no sense. Life is complicated by the simple act of thought, and to not think seems mostly an impossibility, without the aid of extreme measures, strength, and endurance. Every ounce of energy might be used up on just controlling and stopping thoughts. And then depleted, every ounce of resistance is wiped clean, and we are left infantile.
Next the self-blame rolls in for not having had been enough—strong enough, normal enough, in control enough. We twist the thoughts into a labyrinth-mess. We pity ourselves for pitying ourselves. We become our enemy in hopes of becoming something other than self. We fake confidence or we hide out. We try to escape who we are. We try on different personas and personalities. We try on different skill sets and activities. We change interests. And all the while we watch ourselves in confusion.
And then someone says: Everyone suffers. Stop pitying yourself.
And I think, shit, I see his point. But how the hell do I stop wanting to not be in hell?
Samantha Craft, M.Ed. (aka Marcelle Ciampi) is the mother of three boys, one adult son who is on the autism spectrum. She is the lead job recruiter for ULTRA Testing, an autism educator, the author of the blog and book Everyday Aspergers, Selection Committee Chair at the ANCA World Autism Festival and is active in autism groups locally and globally. Samantha serves as a guest speaker, workshop presenter, curriculum developer, neurodiversity recruitment specialist, and more. She is working on her second book Autism in a Briefcase, written to provide insight to employers and agencies about the neurodiverse talent pool. A former schoolteacher and advocate for children with special needs, she appreciates the skills and talents of autistics. Diagnosed with Aspergers in 2012, she enjoys the arts, writing, movies, travel, and connecting with others. (More people know Sam by Sam because it’s her community pen name.)