I’m increasingly encountering the phrase, “if you’ve met one Aspie…you’ve met one Aspie.” This means that there’s just as much variation among individuals on the spectrum (even within the same level) as there is among allistics (those not on the spectrum).
This also means that I can only speak for myself.
That being said, I’ve lost count of how many blogs and discussion forums I’ve come across that have awakened, comforted, and validated me, and now I want to give back in a way in which I know how: I’ll share, too.
I’m also painfully aware of–and annoyed with–the amount of misinformation and misunderstanding that I can’t help but notice regarding Asperger Syndrome and the autism spectrum in general. I’m astounded by the level of ignorance of the vast majority of the “official” and “professional” authorities out there, who have made egregiously erroneous and potentially harmful assumptions about this condition. I’ll save the “Myths vs Facts” (as I see them) for another post, but suffice it to say…
…No one asked us.
It’s almost like the authorities/experts don’t seem to care. There doesn’t seem to be a lot of interest in hearing the firsthand story.
In frustration, many of us, like myself, turn to the internet in search of blogs and firsthand accounts. What I’m about to do is contribute to that supply of information, which for me has been a reassuring lifeline.
What’s Life Like for someone on the spectrum? Again, I can speak only for myself, and I’ll do my best. Here’s a snapshot of a Day in the Life…
I wake up with no trouble, in front of my laptop, the TV, and the shining living room lamp, where I’d fallen asleep the night before. The lamp, of course, is only one, and it sits in the corner on an end table, putting out 100 watts of light through an earthtone-colored shade. The actual wake-up time may vary; earlier this week it was 3:30am; this morning was 8:30am.
I position the laptop and pick up where I had left off when I drifted off the night before, combing through research articles on various subjects of interest. I have been doing this since December 2013 or January 2014. I find it oddly stimulating (intellectually and emotionally) and relaxing at the same time.
Up until recently, my partner (blessed with a consistent sleep rhythm) would emerge from the bedroom at the last minute (don’t do this). If I was already awake, then suddenly, I was faced with the burdensome task of finding a Stopping Point. If I was still sleeping, my partner’s strategy would be to shake me awake–not violently or aggressively, but annoying just the same (don’t do this, either).
Gather everything up, go through my Mental Checklist (phone, wallet, laptop, hard drive, supplements, water, and anything I was working on the night before). Drop water and keys. Get mad at self.
I’m the driver for both of us (my partner is legally blind), and I cannot express how much I loathe driving. It’s like being cooped up in a cage in the midst of chaos run by animalistic lizard-brains protected by laws written by and for the lowest common denominator. It’s only a 12-to-15-minute commute, but on a particularly electric morning (such as near a Full Moon), I can end up mildly irritated before I even make my way out of the apartment complex grounds.
We arrive at work, as close to our opening time of 9am as possible. Usually, on my way down the hall, I misjudge the distance between the door frames and the rollerbag I drag behind me. Feel the unexpected jolt backward and the prevention of forward movement. Dammit, what is it this time? Bag caught on the corner. Ugh. I’m so clumsy.
The socially-obligatory hellos are almost always awkward; the only variable that fluctuates is the degree of awkwardness. I like who I work with; my workplace consists of my partner, one employee, and one part-time contractor. The employee is new but very nice and comfortable to be around. The part-time contractor is also very mild-mannered and gentle, and has been working with us for more than four years. These are great people with warm and calming personalities. Why the hellos can be so tough had been, up until recently, beyond me. I want to say more, but I know from a long history of empirical data that the more I say, the more awkward I feel. So I try to make up for it with a smile.
Because I’m self-employed, this makes my work week slightly easier. I have quite a bit of say in what I do, and how and when I do it. There’s one aspect that is central to my career that is a major stressor that I can’t change: I have to meet personally with clientele. I don’t have to do this every day, so I have designated specific days in which to do this. Mondays are generally out; anxiety levels tend to run high for me on Mondays anyway, and I also need to “install” myself into the office, get my bearings, check my schedule for the week, and begin to plan my day and the coming week.
I also tend not to meet with clientele on Fridays; the nature of my job is chronic-condition-based healthcare, and I’ve had plenty of emotionally painful and mentally fatiguing experiences with difficult or cases or non-compliant clientele on Fridays in the past, and the associated emotional unsettlement that lingered throughout the entire weekend.
On days in which I do meet with clientele, given its anxiety-producing capability, I strongly prefer to do so as early in the day as possible. I’ve known for years now, that thinking on my feet is not one of my strong points, but if I’m going to do it, I’m best in the morning. Once all meetings have been fulfilled, I can comfortably settle in for the rest of the day and work alone, exploring biological-science-related information in great detail, in an attempt to solve a clinical puzzle. The gamut of emotions is eventually experienced in a typical day, ranging from mild frustration (scientific information doesn’t always have helpful pictures/diagrams or kinesthetically-graspable concepts) to elation when I “crack the case”, meaning to solve said clinical puzzle.
I can “dive in” to this study for hours, forgetting to eat or drink, seemingly “lost” in deep concentration. To be interrupted by anyone in any way elicits intense irritation, because the “task-switching” required in order to attend to the interruption is an overwhelming jolt.
Here’s why: when I “dive in” to my tasks, it’s like diving underwater. It’s tough to see or hear anything else. The rest of the world is muted. Descent is slow, gradually scaling through the depths of the water, properly acclimating to each level, as the world above gets further and further away.
A sudden interruption is like being yanked back to the surface. This is dangerous for an underwater diver; they call it “The Bends” and it can be fatal. When it happens to my concentration in the office, it feels like “The Mental Bends”, and it elicits the applicably intense response.
This is why each day, I pray that can work in peace, and a needy coworker may be a great source of irritation. Office communication by email works much better.
Predictably, time passes too quickly for me and before I know it, it’s time to leave the office. In years past, my partner would simply approach me and say, “time to go.” I felt irritation, halfway between resenting being treated like a child and resenting what appeared to me like a lack of regard for my wishes and needs in favor of his. In recent years, he would simply stand in the doorway of my office, not saying anything. This, too, was a mild irritation. It took me a few more seconds to realize he was there, so his presence didn’t pack the same jolting effect, but once I did realize he was there, I felt the obligation just the same: must find another Stopping Point.
The workday is book-ended with my least favorite activity: driving. Again. The effects of driving on me depend largely on the density of the traffic; I enjoy driving in the country on the open road; sitting in bumper-to-bumper traffic is a moderate form of torture. It appears that about 50-75% of drivers are idiots (my numbers are generous, by the way). I have finally convinced my partner to at least wait until after the peak of the rush hour was past, before even entertaining the idea of leaving the office. Despite my clumsiness, I am a surprisingly capable driver with unexpectedly quick, intact reflexes.
Once home, after I have chatted on the phone with any one of the three or four people in my inner circle with whom I had plans to talk that evening, the rest of the night is mine/ours. I change into my sleepwear (yoga pants or sweatpants and a long-sleeved shirt), unpack my laptop, position it in the same place, and grab my cell phone and dinner or snacks (always some form of dark chocolate and typically a fruit-and-vegetable smoothie) and flavored water.
With this in hand (after I’ve dropped a few things a few times or rounded a corner too tightly and hit the wall with my shoulder), I dive for the couch, curling up in my usual position, in the same spot, with the same blankets. Blankets are a must; I need their weight.
My partner assumes his usual spot, too. We exist together comfortably and contently, without any further outside obligation.
We usually decide on a movie or cable TV show (very select, of course). The laptop opens, the TV and cable box come to life, the cat comes up to lay next to me, and everything I had just rounded up is situated in their rightful places around me, within easy reach. It’s time to explore the scientific research world once again.
My partner will eventually make his way into the bedroom, kissing me goodnight beforehand. He knows I won’t be coming to bed. It’s nothing against him. I’m just not ready for bed yet and I don’t want to disturb his sleep. I miss him at night, but I don’t mind being alone. I wonder if he misses me.
PubMed.gov makes a great night-time companion for me. I have significantly less anxiety now that I collect individual research articles of interest and save them to my hard drive. (I did have to get a separate removal hard drive; my on-board hard drive is over 90% full.) I will fall asleep doing that. Often, I will fall asleep so suddenly that it happens while I’m in the process of saving an individual file. I may wake up anywhere from five minutes to eight hours afterward, staring at a “Save As” box.
I’m surprised when people ask, “doesn’t that keep you awake? Isn’t it interfering with your sleep?” This question is so common (OK, maybe five or six times; my circle is purposefully small) that it has almost gotten annoying. The answer is, “no”. Really…no. Why would it? It relaxes me. Relaxing activities facilitate sleep. I know they mean well. The mild annoyance is nothing personal.
Sleep, by the way, will hit very suddenly, as if someone flipped a switch on my back from “on” to “off”. Its timing is completely unpredictable, however; one night this week, it was 8pm; last “night” it was 4:15am. Often, if I fall asleep earlier (which for me is 9-11pm), I might wake up at 1-3am and be awake until about 6am.
So….do I go out to eat? Occasionally, and preferably during the quieter times between peak times.
Do I go shopping? Grocery shopping, yes, although my husband goes in. I drive, he shops. There’s one exception: if the parking lot is fairly empty, such as on a Saturday morning, I’ll go in myself.
Do I go to the mall? How emphatically can I say hardly ever? Yeah, forget it. Instant neurological buzz that quickly mounts to a level of overwhelming.
Do I go on road trips? Preferably only to rural or remote areas. I need to do this every so often, but the frequency varies.
Physical movement is sufficient and on some days, plentiful, but I dread it. I like the act itself of being physically active. However, every single movement must be consciously and carefully planned and slowly executed. I feel extremely top-heavy (although I’m not) and not in control of my body.
It’s not like I have tics or Tourette’s with sudden involuntary movements; it’s that my voluntary movements are usually wrong. I overshoot, undershoot, forget something is there, or otherwise fail to keep track of where my body parts are in time and space. It’s an extreme source of frustration, irritation, and fear (i.e., how bad is this going to get during my lifetime?).
I trip over things, drop things, bump into things, knock things over. All of these can and have happened several times in one hour.
Therefore, I must maintain keen awareness of every movement at all times, for fear of making noise, bothering others, looking stupid, drawing attention, breaking something, creating chaos, embarrassing myself, or even injuring myself. Please pardon the French, but Fuck Forks, by the way. Spoons aren’t fail-safe, but the food is much more likely to reach my lips.