By official standards, I’m considered an Aspie (internationally) or “high-functioning” autistic (in the US and other places that use the DSM)…
….and my life is anything but “mild”.
Sometimes, it takes me forever to get dressed because I may not like the feeling of certain shirts or jeans or the way they fit me on that particular day. I might find them constraining in the wrong places or they might not “look right”. Every day, I’m self-conscious of my personal appearance. It doesn’t help that I “lack ‘theory of mind'”, which introduces the possibility that despite giving an honest effort, I probably don’t perceive how I look accurately, and I’ll probably leave the house with a different impression of my appearance than other people will form.
My self-concept is always in jeopardy.
I will usually forget something when leaving the house for work. If what I’ve forgotten is important enough, I’ll have to turn around and go back home to get it; if not, or if I can’t (because I’m running late or too close to the edge as it is), then I have to do without.
My sanity is always temporarily at risk.
Any meetings must be scheduled as close to the beginning of the day as possible. No matter who I’m meeting with, the very idea of interacting with them causes anxiety. I feel the pressure of having to live up to their expectations. I feel thrust into a persona that isn’t really me. I feel awkward and unsure of myself. But the meetings are an absolute necessity; our very livelihood–and thus, our survival–depends on them.
My livelihood and survival are always at risk.
When meetings are finished, I’m relieved to finally be able to settle in and do what I do best, which is to work alone, on “nerdy” tasks and projects that require intense concentration. Any interruption completely derails my train of thought and instantly ignites ire and irritability. As much I’d like to be able to, I can’t hide or censor this; it projects to the other person beyond my ability to modify or soften it. Working relationships and employee morale are at stake, and I risk doing serious damage to them. After losing this train of thought, I also lose precious time, trying to dive back down, pick back up, and regain that concentration. I risk forgetting important details and making vital mistakes.
My relationships at work are always at risk.
Even interacting with people close to me is challenging; all of them (at least, the ones in “real life”) are allistic (non-autistic). This means that no one, no matter how long they’ve known me, can truly understand what goes on in my head, what I’m thinking or the full gist of what I’m saying. I never can quite get 100% of my point across.
My self-expression is always compromised.
Driving is an incredibly stressful ordeal. The good news is, we live fairly close to where we work, so large distances and freeways need not be involved. The bad news is, there’s a weekly drive to the next big city, which always involves heavy traffic and a lot of jerks on the road. Childish brains shrouded in adult bodies, with drivers licenses make my 90-minute trip (each way) a living hell. I feel like I’m stuck in a metal cage, a pacing tiger, attempting to anticipate the “thoughts” and actions of the surrounding idiocracy. My damp hands clutch the steering wheel, as I pray that we simply make it to our destination alive and unharmed.
Our survival is always at risk. (That’s true for everyone; I seem to be the only one on the road who is hyper-aware of that fact, and I hear the same from other people on the spectrum.)
The cumulative anxiety that has gathered throughout the day also demands its price; sleep and I are much like estranged lovers. Sleep may come early, late, later yet, or not at all. I never know how much I’ll get or whether or not it’ll be enough or how I’ll feel or function the next day if I don’t.
My health is always at risk.
I have friends, but rarely see them because even those few who live in our area require that we drive to meet them. I call a few others (a small handful) on the phone, and we talk for a while before I realize I’ve dominated the conversation once again and get embarrassed, wondering what they must think about me now.
My friendships are always at risk.
I don’t go out to many places. When I do, I time my ventures to avoid the rush hour or peak traffic times. I’m limited in what I can do. My partner does all the shopping, especially in places where I sense hurried or negative vibes and toxic, pretentious people. I can’t handle malls or yuppie shopping areas; people are just too full of themselves and it grinds on me, making me irritable. My schedule must be manipulated and altered around the whims of the rest of the world in order to preserve my sanity.
My energy is compromised. My ability to live independently should something happen to my partner, is compromised.
My partner also makes all the phone calls, takes care of all the everyday issues that arise, handles all of the business/household administrative tasks. I might direct him or come up with the ideas, but he’s the one who puts them into action and makes them become reality.
My ability to live independently or run the business on my own if I had to, is compromised once again.
My apartment is a mess because even though I despise clutter, I’m usually too worn-out to take a day and clean. When I can, I do, but it’s not as often as I would like it to be.
My well-being is compromised.
Moving around is challenging because although I’m mobile, I’m also hopelessly clumsy. This draws unwanted attention to myself. Every time I run into something, knock something over, or trip over something, it serves as a reminder that I’m relatively inept…or at least, I shouldn’t exactly try out for Cirque de Soleil any time soon. Maybe in my next lifetime. But definitely not this one.
My mobility (ability to move about without accidental self-injury) is compromised.
I’m verbal, but that’s not always what it’s cracked up to be; what’s the point of talking when most people won’t understand you? I do anyway, but I don’t feel fully understood. I find it easier to write or play music instead. I find it easier to think in pictures and concepts, but the speed at which I can do that is much faster than anything I can put into words.
My self-expression is compromised.
I try my best and work my hardest, and I give everything I can, but it isn’t always enough.
So when anyone tries to say that Asperger’s or high-functioning autism is “mild”, I get a little irritated sometimes. I know that everyone has a certain amount of stress in their lives, but people on the spectrum have many of those same stresses and more. The world is built for “everyone else”; it is foreign and nonsensical to us. Everything we do still has to be done, but only as we also try to make adjustments, striking a balance between what the world wants, what works for everyone, and also what we have the ability to do and what works for us. There’s an extra layer of effort embedded in everything we say and do, a permanent culture clash and translation or conversion of one “operating system” to the other.
Again, my world (and I imagine the world of others on the spectrum) is anything but “mild”.
This is one of my more popular posts!
(Image Credit: Minjae Lee)