{"id":2423,"date":"2021-09-15T12:57:41","date_gmt":"2021-09-15T17:57:41","guid":{"rendered":"https:\/\/www.tameri.com\/wordpress\/autisticme\/?p=2423"},"modified":"2023-11-26T16:27:08","modified_gmt":"2023-11-26T22:27:08","slug":"podcast-episode-070-life-on-edge","status":"publish","type":"post","link":"https:\/\/www.tameri.com\/autisticme\/2021\/09\/15\/podcast-episode-070-life-on-edge\/","title":{"rendered":"Podcast Episode 070 &#8211; Life on Edge"},"content":{"rendered":"<p><em>Podcast Episode 0070, Season 5, Episode 1; 15 September 2021<\/em><\/p>\n<h3>Living on Edge: Life\u2019s Little Disasters<\/h3>\n<p>Stop with the \u201cSpoon Theory\u201d 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\u2019s 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.<\/p>\n\n<!-- iframe plugin v.6.0 wordpress.org\/plugins\/iframe\/ -->\n<iframe loading=\"lazy\" style=\"border: none\" src=\"\/\/html5-player.libsyn.com\/embed\/episode\/id\/20527844\/height\/90\/theme\/custom\/thumbnail\/yes\/direction\/backward\/render-playlist\/no\/custom-color\/336699\/\" height=\"90\" width=\"100%\" scrolling=\"no\" 0=\"allowfullscreen\" 1=\"webkitallowfullscreen\" 2=\"mozallowfullscreen\" 3=\"oallowfullscreen\" 4=\"msallowfullscreen\" class=\"iframe-class\" frameborder=\"0\"><\/iframe>\n\n<h3>Transcript<\/h3>\n<p>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\u2019t care how close to the edge a cyclist might be. There\u2019s 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.<\/p>\n<p>We left California 15 years ago, so I haven\u2019t 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 \u2014 and there\u2019s no beautiful scenery to offset the risks.<\/p>\n<p>Hello. I\u2019m Christopher Scott Wyatt, speaking as <strong>The Autistic Me<\/strong>.<\/p>\n<p>In this podcast episode, I am using cycling as a metaphor for and reflection of my daily anxieties and frustrations. I\u2019ll 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.<\/p>\n<p>Every day feels like I\u2019m coasting downhill, living on the edge and waiting for one of life\u2019s \u201clittle disasters\u201d to cause a painful crash. I\u2019m right on the edge of disaster and only in control of myself, not the world around me.<\/p>\n<p>I\u2019m also reminded of hitting patches of ice while driving in Minnesota or Pennsylvania. You really can\u2019t 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?<\/p>\n<p>The best you can do is try to control yourself. Then again, with autism and other factors, I\u2019m only mostly in control of myself. I\u2019m uncertain anyone has complete control, though that\u2019s an admirable goal. I do make every effort I can to be as in much control of my mind and body as possible.<\/p>\n<p>Waiting for the frustrating moments to arrive, I try to prepare. I want to remain calm. I want to accept life isn\u2019t calm and predictable.<\/p>\n<p>I\u2019ve tried meditation, yoga, and all sorts of \u201ccognitive-behavioral\u201d techniques. Nothing really works. Fortune cookie philosophies, the wisdoms of self-help posters, only upset me more.<\/p>\n<p>The wind does not break the tree that bends.<\/p>\n<p>Don\u2019t fight the river\u2019s current; embrace the journey.<\/p>\n<p>Right up there with, \u201cDon\u2019t sweat the small stuff\u2026 and it\u2019s all small stuff.\u201d<\/p>\n<p>Except it isn\u2019t all small stuff.<\/p>\n<p>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.<\/p>\n<p>The more I reflect on it, the more I find the cycling example appropriate.<\/p>\n<p>The driver in a massive truck or SUV feels invulnerable to the world. It\u2019s 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.<\/p>\n<p>At work or school, I\u2019m the cyclist surrounded by trendy oversized SUVs who won\u2019t even notice they\u2019ve forced me off the road.<\/p>\n<p>Cycling is a choice. Being Neurodiverse is not. I don\u2019t choose to be vulnerable to overload. Nobody wants to live with constant anxiety and fear.<\/p>\n<p>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 \u201clife happens\u201d occurrence that I cannot control, but that will leave me feeling like I\u2019m falling down an infinite well.<\/p>\n<p>Under stress, I flee. I panic and feel like I\u2019m going to die. My heart races. I shake. I can\u2019t control my movements. It\u2019s horrible.<\/p>\n<p>Fleeing a situation looks like anger, a tantrum, an unreasonable response. I\u2019ve walked out of meetings. I\u2019ve abruptly left social events. I\u2019ve run away from conflicts as a student in classes, rushing from a classroom in panic.<\/p>\n<p>These were already high-anxiety situations, with demanding social interactions. And then, something triggered the panic and fear I was already anticipating.<\/p>\n<p>It might have been someone\u2019s tone of voice. A person stepped too close to me. I made a mistake trying to take notes. It doesn\u2019t matter. Some tiny thing felt like a nudge towards the edge.<\/p>\n<p>The smallest thing can become a major disaster, especially when I\u2019m already on high alert.<\/p>\n<p>It\u2019s one thing to be hyper-vigilant riding a lightweight carbon-fiber bike down a mountain. It\u2019s quite another to be tossed into complete panic by a torn page of paper, an ink smear, or a minor kitchen mishap.<\/p>\n<p>Technology has failed me often enough that I\u2019m always anticipating losing my work. And, yet, there are times when technology is beyond my control\u2026 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\u2019ll have to do the process more than once.<\/p>\n<p>When the data vanish, I am emotionally and physically devastated. It\u2019s overwhelming, even though I anticipate the problems.<\/p>\n<p>Our local school district just deleted our online accounts. It\u2019s all gone. I\u2019m angry, frustrated, and unable to just let it go. My wife couldn\u2019t access the system and asked for help resetting her account. Somehow, this request led to Susan and I both losing access to the system\u2026 and our daughters\u2019 data were erased. I\u2019m now worried the girls will need new student ID numbers, new email addresses, and new codes to access the virtual learning resources.<\/p>\n<p>Realistically? Not a disaster of life-threatening proportions. However, I\u2019d be lost if I had to get a new student ID. I get attached to things\u2026 including virtual identities.<\/p>\n<p>A few nights ago, I noticed a flaw in the book I\u2019m reading. I saw what seemed like a piece of dust. Brushing it off the page, the top of a lowercase \u201cd\u201d was removed. It will now bother me every time I read the book. It\u2019s broken. It\u2019s 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?<\/p>\n<p>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.<\/p>\n<p>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.<\/p>\n<p>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\u2019re riding along, trying to be careful, and some self-absorbed jerk moves as close to you as possible. I\u2019ve had drivers honk at me and speed up, which is absolutely a stupid thing to do.<\/p>\n<p>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\u2019s bullying, and it causes a meltdown. The bully then revels in telling others how unstable you are.<\/p>\n<p>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\u2019ve had to use a cane during interviews, so I\u2019m not exactly hiding that I need accommodations.<\/p>\n<p>Disclosing you are autistic and explaining your needs seems to encourage the bullies, especially if they are supervisors.<\/p>\n<p>There are exceptions. Rare exceptions.<\/p>\n<p>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.<\/p>\n<p>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.<\/p>\n<p>Every colleague was supportive. Every administrator with whom I dealt was responsive to questions and concerns.<\/p>\n<p>Sadly, that\u2019s not representative of my experiences elsewhere.<\/p>\n<p>At most workplaces and schools, the Neurodiverse are met with hostility. Disabilities are viewed as inconveniences and burdens on the \u201cnormal\u201d people. Our requests, usually made timidly and phrased as apologies, are described as demands and impositions.<\/p>\n<p>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\u2019t sound happy or cheerful, much less diplomatic.<\/p>\n<p>Either autistics sound like we\u2019re not really making a request, or we sound like we\u2019re making a demand. The requests for accommodations go something like this:<\/p>\n<p>\u201cIt would be nice if I could possibly have a desk near the window.\u201d<\/p>\n<p>\u201cDesks are assigned by seniority.\u201d<\/p>\n<p>\u201cThe fluorescent lights are really painful.\u201d<\/p>\n<p>\u201cEveryone complains about the lights. You\u2019ll get used to them.\u201d<\/p>\n<p>\u201cI need a desk with natural light.\u201d<\/p>\n<p>\u201cYou do not get to make demands.\u201d<\/p>\n<p>Similar conversations might occur regarding headphones, earplugs, sunglasses, and a variety of other accommodations that help autistics reduce their sensory and physical discomfort.<\/p>\n<p>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.<\/p>\n<p>Mentioning this to my supervisor didn\u2019t go well.<\/p>\n<p>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.<\/p>\n<p>Even coworkers with slightly higher ranks find it tempting to bully the autistic. It seems to me that when I\u2019m already on edge is when people are most likely to bump and nudge me psychologically.<\/p>\n<p>There\u2019s no question the bully knows what might happen. Other people, however, might not know I\u2019m 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.<\/p>\n<p>At one job, I made the mistake of stating that I needed some assistance figuring out what was expected of me.<\/p>\n<p>How could I not understand the workplace norms? Wasn\u2019t it obvious what everyone else was doing?<\/p>\n<p>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 \u2013 or at least survive \u2013 in the workplace.<\/p>\n<p>Several years ago, one of the classrooms in which I taught had new carpeting installed during the semester, on a weekend. It wasn\u2019t worn carpet. It was scheduled maintenance.<\/p>\n<p>I started to get horrible migraines. I was on edge from the pain and exhaustion.<\/p>\n<p>\u201cCan we use one of the other available rooms for a week or two?\u201d<\/p>\n<p>\u201cYou are scheduled for that room.\u201d<\/p>\n<p>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.<\/p>\n<p>Walking away, fleeing the stress, led to yet more accusations of being prone to \u201crage\u201d even though leaving was a wise choice. Rage? I don\u2019t unleash a torrent of profanities or smash things against walls. I walk out, frustrated.<\/p>\n<p>When I consider how dismissive people have been of my needs, then I do get angry.<\/p>\n<p>The Neurodiverse community is told that we have \u201chidden\u201d disabilities. That\u2019s a nice way of saying people know we\u2019re different, but cannot really see or accept that our disabilities are as real and serious and any other disabilities.<\/p>\n<p>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\u2019t want to deal with it. You want us out of the way.<\/p>\n<p>My voice and my body movements are already perceived as \u201cthreatening\u201d 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\u2019m the edge of sanity.<\/p>\n<p>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.<\/p>\n<p>I\u2019m 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\u2019s a passing lane, a turnout, a bit of paved shoulder, or a safe apron on the side of the road.<\/p>\n<p>Sometimes, I just need to get out of the traffic for a few minutes.<\/p>\n<p>When I have spoken on this sense of being on edge, someone inevitably responds, \u201cYou\u2019re out of spoons!\u201d The audience nods.<\/p>\n<p>No. I\u2019m not out of spoons. Christine Miserandino\u2019s 2003 essay \u201cThe Spoon Theory\u201d doesn\u2019t work for my experiences. It does not reflect my life. I do not have a set number of spoons of energy. I don\u2019t get it. I\u2019m never going to get it.<\/p>\n<p>Please, no matter what the metaphor is, if I don\u2019t 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\u2019ve said. Stop talking about the spoons and listen to my words.<\/p>\n<p>I own my experiences. I get to use the comparative metaphor I can understand.<\/p>\n<p>A highly credentialed autism expert told me I just didn\u2019t realize I was running out of spoons. Surely there were days when I had more tolerance for the minor annoyances.<\/p>\n<p>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.<\/p>\n<p>It\u2019s not a fuel tank, a spoon, or some other measure of tolerance for suffering.<\/p>\n<p>One thing, one event, one disruption might and often does cause me to collapse.<\/p>\n<p>It isn\u2019t like, \u201cOh, well, two minor things happened but I have enough energy for two more mishaps or inconveniences today.\u201d<\/p>\n<p>That\u2019s why the cycling comparison works for me.<\/p>\n<p>You\u2019re riding along. Everything is great. You\u2019re looking at the trees, listening to the birds, cruising carefully along the edge of the road, pedaling with a steady rhythm.<br \/>\nAnd around the corner comes one of those trucks. You\u2019re forced towards the edge, where gravel causes the rear tire to slide. You think about how far down you\u2019d tumble, feet stuck in the clips. Panic, frustration\u2026 anger.<\/p>\n<p>For me, life is that cycling experience. It\u2019s 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\u2019s the car making a right hand turn into your path, without signaling or pausing.<\/p>\n<p>I need things to go smoothly. They usually do.<\/p>\n<p>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.<\/p>\n<p>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\u2019t like cycling or skating.<\/p>\n<p>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.<\/p>\n<p>The stressors aren\u2019t additive because I\u2019m already on edge. It\u2019s not like you add an itchy shirt tag to a crashing computer program to construction nearby and the result is a meltdown.<\/p>\n<p>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.<\/p>\n<p>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.<\/p>\n<p><em><strong>The Autistic Me Podcast<\/strong><\/em> is my attempt to explain what autistics experience. Now that I\u2019ve worn out the cycling metaphor and likely explained nothing well, it\u2019s time to call it an episode.<\/p>\n<p>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.<\/p>\n<p>I am Christopher Scott Wyatt. Thank you for listening to <em><strong>The Autistic Me<\/strong><\/em>.<\/p>\n<h3>The Autistic Me<\/h3>\n<ul>\n<li>Blog: <a href=\"https:\/\/www.tameri.com\/autisticme\/\">https:\/\/www.tameri.com\/autisticme\/<\/a><\/li>\n<li>Podcast: <a href=\"https:\/\/autisticme.libsyn.com\/\">https:\/\/autisticme.libsyn.com\/<\/a><\/li>\n<li>Facebook: <a href=\"https:\/\/www.facebook.com\/autisticme\/\">https:\/\/www.facebook.com\/autisticme\/<\/a><\/li>\n<li>Twitter: <a href=\"https:\/\/twitter.com\/autisticme\">https:\/\/twitter.com\/autisticme<\/a><\/li>\n<li>YouTube: <a href=\"https:\/\/www.youtube.com\/c\/CSWyatt\">https:\/\/www.youtube.com\/c\/CSWyatt<\/a><\/li>\n<li>LinkedIn: <a href=\"https:\/\/www.linkedin.com\/company\/autisticme\">https:\/\/www.linkedin.com\/company\/autisticme<\/a><\/li>\n<\/ul>\n","protected":false},"excerpt":{"rendered":"<p>Podcast Episode 0070, Season 5, Episode 1; 15 September 2021 Living on Edge: Life\u2019s Little Disasters Stop with the \u201cSpoon Theory\u201d 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&#8230;<\/p>\n<div class=\"more-link-wrapper\"><a class=\"more-link\" href=\"https:\/\/www.tameri.com\/autisticme\/2021\/09\/15\/podcast-episode-070-life-on-edge\/\">Continue Reading<span class=\"screen-reader-text\">Podcast Episode 070 &#8211; Life on Edge<\/span> <i class=\"fas fa-angle-right\"><\/i><\/a><\/div>\n","protected":false},"author":7,"featured_media":3458,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"advanced_seo_description":"","jetpack_seo_html_title":"","jetpack_seo_noindex":false,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"iawp_total_views":11,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[3,4,5,10,11,13],"tags":[76,81,97,118,186,554,616,698,779],"class_list":["post-2423","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-education","category-employment","category-podcast","category-relationships","category-writing","tag-autism","tag-autistic","tag-bicycling","tag-bullies","tag-coworkers","tag-podcast","tag-school","tag-teachers","tag-workplaces","entry"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tameri.com\/autisticme\/wp-content\/uploads\/sites\/5\/2023\/11\/Podcast_Banner_800x400.png?fit=711%2C400&ssl=1","jetpack-related-posts":[],"jetpack_sharing_enabled":true,"jetpack_likes_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/pfivLC-D5","_links":{"self":[{"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/posts\/2423","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/comments?post=2423"}],"version-history":[{"count":1,"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/posts\/2423\/revisions"}],"predecessor-version":[{"id":3525,"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/posts\/2423\/revisions\/3525"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/media\/3458"}],"wp:attachment":[{"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/media?parent=2423"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/categories?post=2423"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.tameri.com\/autisticme\/wp-json\/wp\/v2\/tags?post=2423"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}