Last updated on November 26, 2023
Podcast Episode 0070, Season 5, Episode 1; 15 September 2021
Living on Edge: Life’s Little Disasters
Stop with the “Spoon Theory” metaphor. Allow me to choose my own metaphor for my lived experiences as an autistic with other disabilities. In this episode of The Autistic Me, I explain why cycling reminds me of life in general. Sharing the road with other people contributes to every cyclist’s anxiety. You never know what the cars and trucks around you might do. Too often, I feel like a cyclist surrounded by SUVs that are driven by people talking on their cellphones while reaching for cups of coffee.
Transcript
When we lived in California, I would go cycling in the foothills and mountains of Central California. A few times, I ended up going downhill, with traffic, on Highway 180 near Kings Canyon National Park. Many drivers don’t care how close to the edge a cyclist might be. There’s a sense of panic and dread, knowing you cannot control the cars around you. Cyclists are at the mercy of cars everywhere, yet the sense of impending doom is much greater doing 30 to 40 miles an hour downhill on a curving road.
We left California 15 years ago, so I haven’t done much cycling along mountain roads. Cycling anywhere turns out to be a test of nerves. Cycling in the country, I always tried to take routes that were well-known and had either wide shoulders or dotted center lines so traffic could swing wide of riders. City streets might be more dangerous — and there’s no beautiful scenery to offset the risks.
Hello. I’m Christopher Scott Wyatt, speaking as The Autistic Me.
In this podcast episode, I am using cycling as a metaphor for and reflection of my daily anxieties and frustrations. I’ll also discuss why autistic anxieties, fears, and frustrations are sometimes interpreted as anger or even rage by some people, especially those people unfamiliar with the Neurodiverse need for control and predictability.
Every day feels like I’m coasting downhill, living on the edge and waiting for one of life’s “little disasters” to cause a painful crash. I’m right on the edge of disaster and only in control of myself, not the world around me.
I’m also reminded of hitting patches of ice while driving in Minnesota or Pennsylvania. You really can’t do much except hope to remember which way to steer. Is it into or opposite the slide? Will you get it right? Can you correct the mistake?
The best you can do is try to control yourself. Then again, with autism and other factors, I’m only mostly in control of myself. I’m uncertain anyone has complete control, though that’s an admirable goal. I do make every effort I can to be as in much control of my mind and body as possible.
Waiting for the frustrating moments to arrive, I try to prepare. I want to remain calm. I want to accept life isn’t calm and predictable.
I’ve tried meditation, yoga, and all sorts of “cognitive-behavioral” techniques. Nothing really works. Fortune cookie philosophies, the wisdoms of self-help posters, only upset me more.
The wind does not break the tree that bends.
Don’t fight the river’s current; embrace the journey.
Right up there with, “Don’t sweat the small stuff… and it’s all small stuff.”
Except it isn’t all small stuff.
Sometimes, resistance to sensory, physical, and emotional overload becomes an act of self-preservation. Frustration and, yes, sometimes anger, is a way to resist being pushed off the road by the self-absorbed drivers.
The more I reflect on it, the more I find the cycling example appropriate.
The driver in a massive truck or SUV feels invulnerable to the world. It’s their 7,500 pounds of Super Duty truck versus the 200 pounds of a fully equipped cyclist protected by a tiny helmet. The cyclist is vulnerable to everything, especially other people on the road.
At work or school, I’m the cyclist surrounded by trendy oversized SUVs who won’t even notice they’ve forced me off the road.
Cycling is a choice. Being Neurodiverse is not. I don’t choose to be vulnerable to overload. Nobody wants to live with constant anxiety and fear.
No matter how illogical or how unreasonable it might seem to other people, I am always right on the edge of a meltdown caused by something not working properly, someone not completing a task competently, some “life happens” occurrence that I cannot control, but that will leave me feeling like I’m falling down an infinite well.
Under stress, I flee. I panic and feel like I’m going to die. My heart races. I shake. I can’t control my movements. It’s horrible.
Fleeing a situation looks like anger, a tantrum, an unreasonable response. I’ve walked out of meetings. I’ve abruptly left social events. I’ve run away from conflicts as a student in classes, rushing from a classroom in panic.
These were already high-anxiety situations, with demanding social interactions. And then, something triggered the panic and fear I was already anticipating.
It might have been someone’s tone of voice. A person stepped too close to me. I made a mistake trying to take notes. It doesn’t matter. Some tiny thing felt like a nudge towards the edge.
The smallest thing can become a major disaster, especially when I’m already on high alert.
It’s one thing to be hyper-vigilant riding a lightweight carbon-fiber bike down a mountain. It’s quite another to be tossed into complete panic by a torn page of paper, an ink smear, or a minor kitchen mishap.
Technology has failed me often enough that I’m always anticipating losing my work. And, yet, there are times when technology is beyond my control… and it inevitably fails. Online HR systems have lost my employment information too many times to count. Applying for jobs via online portals causes anxiety because I know I’ll have to do the process more than once.
When the data vanish, I am emotionally and physically devastated. It’s overwhelming, even though I anticipate the problems.
Our local school district just deleted our online accounts. It’s all gone. I’m angry, frustrated, and unable to just let it go. My wife couldn’t access the system and asked for help resetting her account. Somehow, this request led to Susan and I both losing access to the system… and our daughters’ data were erased. I’m now worried the girls will need new student ID numbers, new email addresses, and new codes to access the virtual learning resources.
Realistically? Not a disaster of life-threatening proportions. However, I’d be lost if I had to get a new student ID. I get attached to things… including virtual identities.
A few nights ago, I noticed a flaw in the book I’m reading. I saw what seemed like a piece of dust. Brushing it off the page, the top of a lowercase “d” was removed. It will now bother me every time I read the book. It’s broken. It’s damaged. The book now causes me pain. Was it my fault? Did I destroy the book? What kind of horrible person am I to be so careless?
Panic causes me to raise my voice. I yell my answers to questions. I shake and can barely stand. To control myself, I clench my fists and try to bounce them off my legs instead of striking another surface.
People already make assumptions and embrace stereotypes about explosive, volatile autistics. An autistic in sensory overload and social overload is primed to snap. Any surprise, any shock to the system will be overwhelming.
When a jerk driving a truck drives you into gravel, is it so unusual to curse the driver and scream at the pain of road burn? You’re riding along, trying to be careful, and some self-absorbed jerk moves as close to you as possible. I’ve had drivers honk at me and speed up, which is absolutely a stupid thing to do.
Now, compare that to telling everyone you have sensory issues and need a room kept quiet and dim. Someone inevitably finds it entertaining to make a sudden noise, play with the lights, or otherwise trigger discomfort. It’s bullying, and it causes a meltdown. The bully then revels in telling others how unstable you are.
With The Autistic Me blog and podcast; an extensive list of conference appearances; non-profit board memberships, and other obvious indicators, supervisors and colleagues know I am autistic before I have interviewed for a post. I’ve had to use a cane during interviews, so I’m not exactly hiding that I need accommodations.
Disclosing you are autistic and explaining your needs seems to encourage the bullies, especially if they are supervisors.
There are exceptions. Rare exceptions.
During my last on-campus university teaching post, the dean and department made every effort to address barriers I encountered. Slippery Rock University of Pennsylvania was an example of how to treat people with respect and dignity.
When I slipped and stumbled on a crumbling concrete ramp, the dean made sure that ramp was promptly replaced with new concrete. When I reported the elevator I needed to use was being used to store cleaning supplies, the dean quickly had that issue resolved. He was a diplomat and a fantastic leader.
Every colleague was supportive. Every administrator with whom I dealt was responsive to questions and concerns.
Sadly, that’s not representative of my experiences elsewhere.
At most workplaces and schools, the Neurodiverse are met with hostility. Disabilities are viewed as inconveniences and burdens on the “normal” people. Our requests, usually made timidly and phrased as apologies, are described as demands and impositions.
My oldest daughter and I have been told we sound serious and argumentative. Other autistics tell me that people have the same reaction to them. Apparently, autistics just don’t sound happy or cheerful, much less diplomatic.
Either autistics sound like we’re not really making a request, or we sound like we’re making a demand. The requests for accommodations go something like this:
“It would be nice if I could possibly have a desk near the window.”
“Desks are assigned by seniority.”
“The fluorescent lights are really painful.”
“Everyone complains about the lights. You’ll get used to them.”
“I need a desk with natural light.”
“You do not get to make demands.”
Similar conversations might occur regarding headphones, earplugs, sunglasses, and a variety of other accommodations that help autistics reduce their sensory and physical discomfort.
So, of course at one campus I ended up with a basement office, next to the HVAC system. The lights flickered, the air system roared, and you could hear every step on the floor above. I could hear lectures and presentations from all around me, too.
Mentioning this to my supervisor didn’t go well.
Sharing the road with us? The bullies are the drivers with lifted four-wheel-drive trucks, seeing that the road curves ahead and wondering if they can spook the cyclist for fun.
Even coworkers with slightly higher ranks find it tempting to bully the autistic. It seems to me that when I’m already on edge is when people are most likely to bump and nudge me psychologically.
There’s no question the bully knows what might happen. Other people, however, might not know I’m autistic, that I have sensory processing issues, that I have a palsy, and so on. What the other observers see is the threatening autistic, the shaking, screaming, angry man who pushes his way out of the room.
At one job, I made the mistake of stating that I needed some assistance figuring out what was expected of me.
How could I not understand the workplace norms? Wasn’t it obvious what everyone else was doing?
We enter the workplace or classroom anticipating the worst. Autistics are conditioned by experience to expect confusion, conflict, stress, and failure. After enough negative evaluations, jobs lost, and jobs quit in panic, we stop believing we can succeed – or at least survive – in the workplace.
Several years ago, one of the classrooms in which I taught had new carpeting installed during the semester, on a weekend. It wasn’t worn carpet. It was scheduled maintenance.
I started to get horrible migraines. I was on edge from the pain and exhaustion.
“Can we use one of the other available rooms for a week or two?”
“You are scheduled for that room.”
Eventually, I ended up shaking and in tears, trying to explain the migraines. The room was not changed. During a follow-up meeting, I was told I was difficult to work with. I walked out of that meeting to avoid screaming. Yes, I was angry. That happens when nobody takes your needs seriously.
Walking away, fleeing the stress, led to yet more accusations of being prone to “rage” even though leaving was a wise choice. Rage? I don’t unleash a torrent of profanities or smash things against walls. I walk out, frustrated.
When I consider how dismissive people have been of my needs, then I do get angry.
The Neurodiverse community is told that we have “hidden” disabilities. That’s a nice way of saying people know we’re different, but cannot really see or accept that our disabilities are as real and serious and any other disabilities.
If we tell you that we are disabled, if we inform HR and obtain documentation as requested, then the disability is only hidden because you don’t want to deal with it. You want us out of the way.
My voice and my body movements are already perceived as “threatening” by too many people. Add any additional frustration and exasperation and I talk faster, louder, and with less eye contact. I fidget. I sweat. Apparently, I look like I’m the edge of sanity.
We ask to be accepted. Most autistics are desperate enough that tolerance will suffice. Tolerate us for a while so we can prove ourselves. Yet, we know that when someone acts tolerant, it often masks negative perceptions of us and our autistic traits.
I’m asking for space on the road, some basic consideration for my physical and emotional needs as a classmate, colleague, or employee. I want to know there’s a passing lane, a turnout, a bit of paved shoulder, or a safe apron on the side of the road.
Sometimes, I just need to get out of the traffic for a few minutes.
When I have spoken on this sense of being on edge, someone inevitably responds, “You’re out of spoons!” The audience nods.
No. I’m not out of spoons. Christine Miserandino’s 2003 essay “The Spoon Theory” doesn’t work for my experiences. It does not reflect my life. I do not have a set number of spoons of energy. I don’t get it. I’m never going to get it.
Please, no matter what the metaphor is, if I don’t get it, stop trying to force it onto me. Ironically, people pushing the spoons have continued to the point at which I walk away, ready to scream at them for not paying attention to what I’ve said. Stop talking about the spoons and listen to my words.
I own my experiences. I get to use the comparative metaphor I can understand.
A highly credentialed autism expert told me I just didn’t realize I was running out of spoons. Surely there were days when I had more tolerance for the minor annoyances.
No. There are not. Ask my wife. Ask my children. Ask my students, to whom I try to carefully explain my physical limitations and sensory challenges.
It’s not a fuel tank, a spoon, or some other measure of tolerance for suffering.
One thing, one event, one disruption might and often does cause me to collapse.
It isn’t like, “Oh, well, two minor things happened but I have enough energy for two more mishaps or inconveniences today.”
That’s why the cycling comparison works for me.
You’re riding along. Everything is great. You’re looking at the trees, listening to the birds, cruising carefully along the edge of the road, pedaling with a steady rhythm.
And around the corner comes one of those trucks. You’re forced towards the edge, where gravel causes the rear tire to slide. You think about how far down you’d tumble, feet stuck in the clips. Panic, frustration… anger.
For me, life is that cycling experience. It’s debris in the road. Nails or screws that cause random flat tires. It is people tossing trash from a car window right ahead of you. It is doors opening into the bike lane. It’s the car making a right hand turn into your path, without signaling or pausing.
I need things to go smoothly. They usually do.
Walking hurts my knees, hips, and back. Jogging or running is definitely out. My paralysis limits working out with weights. Cycling and skating provide exercise with minimal pain. Plus, I like the sense of motion.
However, every time I push off and start pedaling, I anticipate the worst happening. That anxiety, even doing something I enjoy, makes it seem like I don’t like cycling or skating.
I enjoy learning, teaching, writing, and programming. And every classroom and workplace has been a source of anxiety. I wait for the one difficult day that offsets all the good ones. It only takes one sensory input, one physical challenge, one mishap, or one miscommunication and everything seems to collapse. One shock to my system ruins the day, week, or more.
The stressors aren’t additive because I’m already on edge. It’s not like you add an itchy shirt tag to a crashing computer program to construction nearby and the result is a meltdown.
Unfortunately, one of the near-certain triggers is someone telling me I seem tense or anxious. Another is someone telling me I seem unhappy or angry and need to smile more. Telling me I need to relax and smile dismisses my autistic nature. Telling me I need to calm down and stop shaking only makes the tremors worse.
I want to use the same roads other people use. I dread sharing the roads, but I know there are only a few paths to my desired destinations.
The Autistic Me Podcast is my attempt to explain what autistics experience. Now that I’ve worn out the cycling metaphor and likely explained nothing well, it’s time to call it an episode.
If you find the podcast interesting, please leave a review or comment on your favorite podcast platform. Share the podcast and spread the word. Visit the blog and Facebook page, too.
I am Christopher Scott Wyatt. Thank you for listening to The Autistic Me.
The Autistic Me
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