Coming Out as Autistic

I’ve been considering writing about high-functioning autism for months now. I’m not used to sharing much about my life here, but I think what I have to say about autism can do a lot of good. Maybe it can help others be more understanding and empathetic towards autistic people.

So for starters, I’m autistic. I’m 23 years old and have never had a formal diagnosis, but I am seeking one out. Several doctors have told me I’m probably autistic. I’ve suspected it for a few years now. If you read about my life experiences I’m about to share and you’re familiar with the symptoms of high-functioning autism, I think you’ll agree that it’s the only explanation.

Generally I would advise people not to assume they have specific mental conditions they haven’t been formally diagnosed with, but in my case, there’s just nothing else it could be. I may have comorbidities I don’t know about, but autism is surely present.

How I Know I’m Autistic

In this entry, I’ll explain how I know I’m autistic. Keep in mind that some of these stories aren’t indicative of autism by themselves. A neurotypical could plausibly have the same single experience, but never all of them.

Let’s start off with my intense interests, deficits, sensory issues, hyperfocus, atypical sleep pattern, and alexithymia. It’s going to be easier to understand the social difficulties and employment struggles if you first understand those things.

Intense And Unusual Interests Starting at an Early Age

As a child, I wanted a friend with whom I could learn higher math and philosophy. Tag, truth or dare, video games, and hide and seek weren’t interesting for me. They were too simple.

I coped with this by making simple things other children enjoyed more complex. I subconsciously steered mind-numbing small talk into discussions about philosophy. My peers mostly weren’t interested and when they were, they weren’t on the same level.

By the time I was an adolescent, I spoke on some topics like a professor. I had an age inappropriate level of knowledge about philosophy given my socioeconomic background. I liked to sit at home studying for fun. In my advanced classes, I purposely stumped teachers for amusement. I preferred to teach myself and I noticed when teachers explained things poorly. Sometimes my math homework wasn’t challenging enough, so I wrote computer programs to do it for an added challenge.

I remember two instances in my high school career where the flow of conversation naturally landed on my special interests. Both times, I dominated the conversation. In Precalculus, my extensive knowledge of philosophy left my peers dumbstruck. After a few moments, only one of them understood what I was saying even though I thought I was speaking plainly.

At bowling, me and my then-girlfriend’s friend were debating about religion. She was very religious. I was and still am an atheist. I’d memorized every argument and refutation. For every incorrect statement she made, I could’ve launched into a half an hour lecture detailing every level of her fractal wrongness. I could’ve made her points better than she did in my sleep. I didn’t understand why my peers were so bad at basic reasoning skills and understanding certain concepts when I understood them so easily the first time.

Deficits

Along with intellectual gifts, I also have deficits. The most obvious is my poor working memory.

Poor Working Memory

My earliest memory of this deficit comes from middle school. My class was sent to the hall outside the English classroom. All us students got in a circle. We were trying to learn each other’s names. I knew I wasn’t good at things like that, so before the exercise even started, I asked the teacher to skip it. She told me to try anyways.

So one person began by stating their own name. Then the person to their left stated their own name and the name of those who stated their name before them. So on and so forth until one person stated everyone’s names.

Things were going smoothly until it was my turn. Despite paying full attention, I could only remember the names of a couple students directly to my right. When I couldn’t recall more names, the other students laughed at me.

When I got a bit older and started working at the SIUe help desk, I remember asking for a student’s ID card. He placed it on my desk. I picked it up and checked it. Then I asked for his ID card again. He furrowed his brow and frowned. The ID card was still on my desk. Even though it had only been a few seconds, I’d forgotten he already gave it to me. I realized how it must’ve looked and quickly finished up.

All throughout my life there were times I was quickly given a set of verbal instructions and failed to follow them because I couldn’t remember them and I was too embarrassed to keep asking. At work, I didn’t want to annoy my boss. At school, I didn’t want to appear incompetent to teachers and classmates.

Abstracting

I also want to explain the trouble I have with abstraction. I’ll explain how this difference makes it hard for me to keep a job. Let’s start with an analogy.

A kitchen is an abstract idea composed of a stove, usually some chairs arranged around a table, a refrigerator, cabinets, and other things. For neurotypicals, when the kitchen chair is moved, that’s just the kitchen with the chair moved. Low-functioning autistics have trouble putting objects into larger, abstract contexts. For low-functioning autistics, a moved kitchen chair can be very distressing because to them, it’s not the kitchen any more.

It’s the same thing for me, except with tasks and goals instead of a chair and a kitchen. When I worked manual labor packing shipping containers, it took a while to understand where the container was headed. It took me a while to figure out that the reason I was cutting the cardboard boxes was so they fit in the commercial recycling unit. I know it’s normal not to understand the purpose behind every subtask related to one’s job immediately, but it takes me so long that I get fired before it makes sense to me.

The scope of most jobs is too broad to be performed by following rule-based instructions. You have to understand the end goal of the job and how the subtasks get you closer to the end goal. I’m very slow to learn that context and most trainers don’t have the patience to verbally explain it several times. The basic problem is it takes me too long to abstract simple subtasks into larger goals. Without that understanding, it’s very hard to do the job.

To put it in oversimplified terms, a layperson watching me work would say I’m “not getting it”, it being what I’m supposed to do. My first boss used that one on me right when I got fired.

Sensory Issues

Loud Noises

In high school I considered hiding in the school bathroom to avoid the loud assembly. I asked a teacher if I could skip it because it was too loud. He was skeptical. Another teacher asked what was going on. He repeated “He says it hurts his ears” in a mocking tone. I was told that without a medical reason I’d face detention for skipping.

So I entered the auditorium, sat down, and shielded my ears with my hands the entire time. I guess no adult noticed or cared. Nobody asked if I was okay, what was wrong, or if I needed to step out. I sat there trying to block the noise as best I could while every other student behaved normally.

On many occasions when I found myself sitting in someone else’s car, I had to ask them to lower the volume on the radio because I couldn’t handle it. I didn’t like being the uncool guy, but I couldn’t help it. If I didn’t ask them to lower it, I would’ve been so overwhelmed by the time we arrived that I couldn’t function socially.

I went to exactly one homecoming, prom, and football game because I had a girlfriend who insisted on it. Otherwise I never would’ve went. Homecoming, prom, and the football game were overwhelmingly loud. I suffered a lot on the inside, but I pretended to enjoy it for the sake of fitting in. I couldn’t imagine how others found watching football interesting. I wanted to do calculus or code instead.

Children have always made me anxious because they scream unpredictably in high-pitched voices. Lower-pitched sounds are less overwhelming. If I know a loud noise is coming, it bothers me less. Loud noises are jarring if I don’t expect them. If I socialize a lot in a day, I have a lower tolerance for noise and lights.

I also avoid automatic flushing toilets because of their loud and sudden flushing.

Bright Lights

At the dentist’s office, I have to close my eyes or wear sunglasses for the bright overhead lights. If it’s sunny outside, I have to wear sunglasses. If the sun is low, it can still be very overwhelming even with sunglasses.

At one point I started wearing sunglasses inside too. I liked that they made light dimmer and assuaged the expectation of making eye contact. I quickly found out that wearing sunglasses indoors makes people think you’re either blind, stoned, or an asshole. I’ve also heard it can increase light sensitivity, so I only wear them outside now.

Come to think of it, the black background of the Web mirror of this journal is probably a symptom of my autism. I think I subconsciously chose it because of my dislike of bright lights. I prefer dark mode, so naturally my website is dark.

My sensitivity to light doesn’t interfere with my daily life as much as my sensitivity to sound though. I think that’s because I can shut my eyes instantly and no light gets through but I can’t plug my ears so that no sound get through.

Clothing & Etiquette

In terms of clothing, I’m not sure whether it’s an autism sensitivity or I just don’t care what people think, but these days I refuse to wear clothes that are even mildly uncomfortable. I also don’t wear clothes that restrict my range of motion. Sometimes I don’t even bother to check if my clothes match. I’ve just never cared much about that.

The fact that people judge others negatively for how they dress boggles my mind. It makes me feel like I never left high school. I couldn’t care less if everyone walked around nude. I’ll probably show up to court and to my own wedding in comfortable casual wear.

I wear my clothes until they fall apart. I don’t care if some have small holes or stains. I practice good hygiene, but I don’t put much effort into my appearance. It helps me filter out people I don’t wanna talk to anyways. Case in point: Me, my then-girlfriend, and her friends went to take prom photos. Her friend told me the top button of my shirt was undone. I said I didn’t mind, but she kept pestering me. Later that day, we went to a classy restaurant and she badgered me about holding the utensils wrong.

A lot of people like to play dress up and pretend following all these arbitrary high society social norms makes them more sophisticated or important or decent than others. I prefer not to encourage that petty one-upmanship through my involvement. I think the need to be seen as better than others is driven by insecurity and a failure of compassion.

I also have a disdain for social etiquette without obvious benefits. I respect the rule of not chewing with one’s mouth open. That’s so you don’t gross others out. But why does it matter the way someone holds their utensils? Shaming people for not following useless social rules seems stupid.

I’m sure there are neurotypicals out there who have reached these same conclusions, but they’re probably easier to arrive at if you’re autistic. Us autistic people are already accustomed to not fitting in. So, in a way, I feel like we’re more free to call out society’s games as games because we have less stake in them to begin with.

Temperature

I also have sensory insensitivities. I’m insensitive to temperature, which causes me to dress inappropriately for the weather. Sometimes I wear shorts when it’s cold and hoodies when it’s hot. One time I was standing outside in the breezy cold during winter. I wasn’t thinking much about it until someone who was violently shivering said “Aren’t you cold?”.

I can sweat without wanting to change clothes. I can shiver without wanting a coat. It has to get pretty uncomfortable before the temperature even registers in my mind. I do feel cold and heat. It just doesn’t always bother me the way it does others.

Food

I’m both sensitive and insensitive to food. On the sensitive side, I’m an extremely picky eater. I don’t like most new foods I try. I used to hate all vegetables, but as a vegetarian, they’re a must. By repeatedly eating vegetables I didn’t like, they became more tolerable and even started to taste good.

With most foods, that hasn’t been the case. Many times I’ve found myself at some gathering and didn’t like any of the food. I don’t like to be rude, so I try to do the polite thing and force it down, but I usually can’t without vomiting.

There’s also food insensitivity. If I’m given a plate of food I like, I can eat all the carrots, then all the potatoes, then all the salad, one by one. I can also go round-robin. Eat some carrots, some potatoes, some salad, then repeat. I have no preference. I don’t know if that’s common or not.

I also have no sense of what food “goes together”. I was getting a plate of food once and a guy gave me an odd look and said “That doesn’t go together”. I said “Why not? What food goes together?”. There are certain foods even I won’t eat together, but I’m less strict about it than most people. With few exceptions, I can eat any food I like with any other food I like.

In addition, it doesn’t make sense to me why people talk about food. I enjoy food, but not as a subject of conversation. It doesn’t rise to that level for me. When someone asks me “How does that taste?”, it’s like me asking them “How was it the last time you wiped your ass?”. It’s not a conversation I care to have.

Thanks to my disinterest in food, I never get cravings. Sometimes I get so wrapped up in my special interests that I forget to eat or drink. One can go a very long time without eating, but forgetting to drink can cause headaches, so I have to be watchful of that.

Hyperfocus

I’ve always had a very strong ability to hyperfocus on some task. If I’m very interested in something, I can focus exclusively on it and nothing else for days at a time. That’s when I’m likely to forget to eat or drink. Everything that’s not the current task just takes a back seat. It’s very good for productivity, but it does have ugly downsides.

Slow Context Switching

One of the drawbacks of being able to focus so intensely on one thing for extended periods of time is that I’m slow at context switching. I struggle to keep up with real-time group conversations. By the time I understand what’s been said, the topic has changed. This limits my ability to participate, so I prefer talking to one person at a time.

I also quickly become frustrated by the way other people have conversations. People barely scratch the surface on every topic and never dive in. They never stick to a subject. I don’t know how people can stand to have boring shallow conversations about nothing all the time.

I met an autistic person at a hackathon once. I let him ramble on endlessly about his special interest. His interest wasn’t even remotely related to programming, but I enjoyed listening anyways. Even though it wasn’t my special interest, he was so passionate that it became interesting.

He was more enjoyable to converse with than neurotypicals because I didn’t have to worry about him judging my social skills and he didn’t often change subject. It was like we were on the same wavelength.

Perseveration

Another behavior related to my hyperfocus is perseveration. It’s very easy for me to continue thinking about the same thing without getting bored or tired. It comes in handy when I have a problem that can be solved with more thinking. But when I have a problem that’s being caused by thinking like a bad mood, it gets worse.

A combination of self-acceptance, mindfulness, and compassion has helped me make peace with negative repetitive thoughts, but it also helps when others don’t provoke negative thinking. It’s good to be mindful of what you say to others in any situation because you never know the internal state in someone else’s mind.

Atypical Sleep Pattern

Somewhat related to my hyperfocus is my atypical sleep pattern. Atypical sleep is apparently common in people with autism. I’ve had it for as long as I can remember. I went through my whole formal education and every job I had sleep deprived. In high school, my friends thought I was high every day because my eyes were always red. I was just sleep deprived. I had to rely on family members to wake me because no alarm would. In university, my career advisor kept telling me that I needed more rest.

The only times in my life when I’ve felt adequately rested were when nothing was required of me. When I don’t have a defined sleep schedule and I can sleep whenever I need, that’s when I’m mentally operating at 100%. If I go to to school or a job every day, I can’t catch enough sleep. When I’m sleepy, my working memory gets drastically worse too. Sometimes I’m late for appointments because I can’t schedule my sleep.

Alexithymia

The last autism-related thing I wanna mention before the social difficulties is alexithymia. Alexithymia is a difficulty in identifying and describing one’s emotions.

The most difficult question I’m asked on a routine basis is “How are you?”. It’s a meaningless question to me. I never know how to respond, so I use a conversation script I have memorized: I say “I’m fine” and then I ask the other person how they are.

I know sometimes people say “How are you?” to mean “Hi”, but sometimes they want a real answer. I can’t query my emotional state and give a meaningful answer within the brief window a real-time conversation allows, or for that matter within any window of time. I can’t query my emotional state at all. So the honest answer is “I don’t know”.

Difficulty Socializing

There’s a lot to say about my social difficulties. I want to share my past experiences, but I don’t want readers to get the idea that my social life has just been a disaster through and through. The stories I’m sharing here aren’t representative of my entire social history. They’re meant to demonstrate difficulties I’ve had that are symptoms of autism.

These experiences of mine are in no particular order. Take the ones that happened a long time ago with a grain of salt because I don’t remember them perfectly. I’m not going to share every autism-related social experience of mine. I have my dirty laundry just like everyone else.

Elementary School

In elementary school, I looked for kids who played sports on the playground. I didn’t care about sports, but they beat being all alone. I asked a kid if I could join the soccer game, but he just insulted me and told me go away. I slowly walked away as my eyes teared up. Seeing how upset I was and probably wanting to stay out of trouble, he told me I could play. I tried to play, but the ball was never passed to me.

At lunch, I sat with the friend group of the same kid I asked if I could play soccer, but no one would talk to me. When I spoke to them, they ignored me like I wasn’t even there.

Another time, I found a friend. I’ll call him friend A. When we weren’t at school, we played online computer games together. We spent hours chatting and leveling up. At school, we were inseparable. We did everything together. Eventually we formed a friend group with two new friends who liked to play Xbox. I’ll call them friends B and C.

We all played army together, with friend B in charge. We leveled up by climbing the ropes and doing work outs during gym. If we leveled up too high, we prestiged and started all over again, like in Call of Duty.

One day, we were all playing Halo together chatting in an Xbox live party. A party is Xbox slang for voice chat. Friend B was the admin of the party. He kept calling me weird over and over in different tones, sort of playing with the word in his mouth. I just thought he was joking around. Then he said “What do you do with a soccer ball? You kick it”. Then he banned me from the party and the game.

Friend B invited me to his house to punch a punching bag and wrestle on his trampoline. I didn’t know it at the time, but he was sizing me up. When we returned to school, he shoved me up against the wall of the school bathroom when we were both alone. With his fist clutching my shirt, he told me that I better not steal friend A from him. He let me go and walked away. I had no idea where this was coming from.

Later, I was walking on the playground with friend A as usual. Then I saw friend B from across the playground. He and friend C were together, both looking in my direction. Friend B pointed right at me and suddenly, friend C charged. As he ran into me, I caught him in a headlock. I choked him until he started to lose consciousness, then I quickly let him go and speed walked away with friend A. I don’t recall what transpired after that.

I once took part in a school spelling bee. The problem with the spelling bee was the instructions. The teacher overseeing the bee gave us all the instructions at once. My working memory couldn’t fit them all. One of the instructions was to say the word, spell it, then say it again. I messed that up by starting out spelling the word.

The teacher tried to correct me, but I was so busy remembering the other rules that I made the same mistake again. The teacher gave up and allowed me to continue anyways. After the second or third word, I caught on. None of the other students seemed to have the same difficulty though.

Middle School

Fast forward to middle school. At one point I had an alright friend group. I still struggled socially and wasn’t sure how to interact with others though. Even though my friends didn’t share my special interests, having them around was better than being alone. Maintaining my friends was hard work though. I’ll give an example.

I was jogging around the gym side-by-side with a friend from that group. He was into dubstep at the time, so I told him I’d been listening to it and flailed my arms around trying to imitate the genre. He quickened his pace so he was far ahead of me. I realized I’d embarrassed him. He slowed down so we were side-by-side again and told me “use your words” in a tone indicating I was mentally retarded for expressing myself in a socially non-conforming way.

I was once taking a test on the computer with a friend of his. We weren’t supposed to talk, but we did anyways. The teacher thought we were cheating, but we were just bored because the test was too easy. So she called us up, one at a time, to investigate what happened. We both told her the same true story and she bought it, so she only scolded us.

When she was scolding me, she told me to look at her while she was talking. That made me very uncomfortable. I found it impossible to listen to what she was saying because I had to focus all my energy on eye contact. It took a lot of effort. I faked an expression of remorse so she would think I was already punishing myself and go easy on us.

You might ask “Isn’t it manipulative to fake remorse?”. It is if you don’t actually feel remorse. Is it manipulative if you never know how you feel though? Is all autistic masking a subconscious form of manipulation? These are tough questions and I don’t have all the answers. Maybe I’ll try to answer them in a future entry, but not right now.

High School

Fast forward to high school. I very rarely spent time with people my age outside school, so my friendships depended on us sitting together in class or sharing lunch hour. None of my friends from middle school shared lunch hour with me, so we drifted apart.

I found someone who also didn’t fit in. We sat together at lunch every day. He got judged by others, but seemed fine to me. He was caring, open-minded, and intelligent, but he had social anxiety. He was also into computers, so he invited me to his place after school and for the first time ever, I got to talk with someone about my special interests. He sat and listened intently, letting me talk as much as I wanted and occasionally asking questions.

I later learned from a friend of his that he thought I was a genius because of my encyclopedic knowledge on certain topics. Up until that point in my life, no peer ever took the time to sit and listen to me brain dump about something I cared about. It brought me tremendous relief knowing there was at least one person who wanted to be around me outside school.

I listened to him about his ambitions to drop out of high school and become a self-taught computer programmer. He felt that school was useless for him. He hated the environment and refused to do any homework. Although I wasn’t so rebellious, I understood where he was coming from. The traditional education system wasn’t working for him. We spent the rest of the night talking, messing around on Ubuntu, gaming, and watching South Park.

I don’t remember how it happened, but we lost touch. I later learned from his friend that he dropped out of high school exactly like he said he would. So I went on the search for friends again.

I joined a lunch table of all guys. I sat at the very end, trying to participate in the conversation. They started calling me names. The closest one pushed my lunch tray away. I slid it back and he pushed it away harder. He was going to make a mess, so I picked up my tray and sat by myself instead.

I got teased a lot in high school and it wasn’t always by my enemies. I kept toxic friends because it seemed better than being alone. Even with friends who normally treated me well, I sometimes accidentally angered them.

I found a good friend group at lunch once. In one way or another, we were all outsiders who didn’t quite fit in, so naturally we all sat together. One day, one of my lunch friends started making passive aggressive comments towards me and I didn’t know why. I asked the others in our group why he was doing this. They said they didn’t know. I thought about it for a long time and then I remembered something.

We were sitting in English class together, him sitting in the seat directly in front of me. He was lamenting how his peers were so bad at critical thinking. I laughed in his face. He thought I was laughing at him, so he turned around and didn’t talk to me the rest of class. I was actually laughing because it was funny how much I related to what he was saying. Sometimes I laugh at things other people don’t. It took me days to realize that miscommunication was what prompted his passive aggressiveness.

After moving away to a new high school, I had a Spanish class where the desks were arranged in groups of four. After the first few days of school, the other three students in my group started picking on me. I didn’t know why I was being treated the way I was. Thanks to them, I dreaded going to Spanish class every day until we were reassigned seats.

As far as high school goes, that’s all I recall. I spent my last year of high school in community college instead because high school had become so intolerable. I didn’t care about starting college early. I just knew I couldn’t go another year in high school.

Community College

In community college, I had no problems with bullying or teasing any more. The environment was different. People were more mature. Everyone there was paying to be there. It was an adult environment, not a hormone-driven teenage popularity contest. I enjoyed it much better than high school.

In community college, I sat next to a girl in English class. We started talking and became friends. We went places outside class. I asked her on what I now know was a date. She accepted, so I went to pick her up. Before we left, her dad told me not to get her in trouble, not to get her pregnant, and that he would use his shotgun if necessary. I respected his candor.

She got in my car and I asked her where she wanted to go. It didn’t occur to me that I was supposed to have a plan or that it was a date. So I drove around aimlessly for a while, stopped at a park for a few minutes, then took her back home.

What was weird about that situation was that I had a string of girlfriends in high school. It wasn’t like I’d never dated before. I think a neurotypical person would’ve known what was expected of them in that situation. For some reason though, I didn’t.

Meanwhile in speech class, the first time I gave a speech, the professor said I “looked at the floor the entire time”. My speech was a story, so I was picturing it in my head as I told it to the class and I guess I forgot about eye contact. I lost points, so I started looking at the back wall while speaking to make it seem like I was addressing the audience. That strategy worked for me and I lost no more points over it.

University

After community college, I transferred to SIUe. I recall a few instances of me having social difficulties there.

Right after class I saw a team made up of some students I knew and some I didn’t. They were discussing their idea for the class project, so I asked about it. I found several problems with the idea, so I told them exactly what I thought: that it was an awful idea. One group member kindly told me that I needed to go because the one who came up with the idea was fuming and ready to hit me. So I left.

If you had asked me before I did that “Is it socially acceptable to interrupt a team outside class and denigrate their project?” I would’ve said no. Over the years I’ve developed an intuition for social norms. They just don’t always occur to me when I need them to. It’s like remembering a million arbitrary rules I have no innate sense for. My goal was not to make other students dislike me. I thought I was just criticizing a bad idea.

There was also a time when I volunteered to teach my class The Lambda Calculus. I presented in front of the class and thought it went pretty well. I got handwritten anonymous feedback from every person in class. Many of the feedback cards said I was monotone. I could’ve tried to give my voice variety, but I think that would’ve been even more distracting than being monotone.

Being in Public

I’ve also had some awkward interactions outside of school. One time at the post office, the clerk asked me if I was waiting on someone. I was waiting on a clerk to service me, so I said yes. She asked me if I was lost. I explained to her I was waiting to be serviced as a customer. Finally she understood and I finished my business there. She initially thought I was literally lost and just wandered into a post office.

So let me break down why I think she thought I was lost. At first, there was one person ahead of me in line. When that person left, I stepped forward, but I didn’t step directly in front of a register. I was just sort of standing in the space between the person behind me and the counter with all the registers. I believe the clerk told me I looked confused. I wasn’t confused. I just wasn’t looking at any particular thing.

I’m not always consciously aware of what I’m looking at. Someone once asked me why I was staring out the same window so much. The view wasn’t great. I wasn’t looking out the window. I just needed a socially acceptable place to idle. I can stand in front of a bare wall with my eyes open just the same, but then people look at me funny. This different way of using one’s eyes is called “the autistic gaze”. I believe that’s what confused the clerk.

The way I was standing probably threw her off as well. Unless I make a special effort, I stand like a statue. I don’t cross my arms. I don’t sway my hips. I don’t tap my feet. I don’t move my head. I just stand. I’ve been told that’s weird. I don’t understand why just standing without moving around uselessly is weird, but it apparently is.

I once had a neurotypical person try to explain to me how to stand normally. They explained I should cross my arms or put my weight on one foot, anything to make my stance less static.

One time I went to see a jazz band with this girl I was into. I had to wear noise canceling headphones as I often do when I go places where there might be loud sounds. Her friends were there. One of them asked why I was wearing headphones. Instead of just telling her friends that I’m sensitive to loud noise or that I’m autistic, she lied and told them “it makes the music sound better”. That relationship didn’t work out.

Employment Struggles

Now I’d like to talk about my employment struggles.

Fast Food

My first job was at a local fast food joint as a line cook. My high school friend helped me get it. I took a picture of the menu and spent time outside of work memorizing which ingredients went with which meals. It was impossible though. No matter how much I studied, I couldn’t remember the ingredients, so I couldn’t make anything. All I could do was bag the food.

When things got moderately busy, it was overwhelming. Too much was happening too fast. There was too much beeping, too many orders, and too much socializing with customers. I burned myself twice right through my cheap gloves while I was hurrying. I showed up late after going back home for my work shoes. The boss scolded me.

A separate time, I got a phone call from work. It was the junior manager asking me how I was enjoying my day off. I didn’t realize he was being sarcastic and that I missed my shift. Looking back, it’s obvious to me now that he wouldn’t just call for no reason. I didn’t realize that at the time though.

I hadn’t even learned how to work the line yet and my job got switched to packing the food into the small plastic bowls. Then it got switched again to doing the dishes. I was told to clean the dishes, so I did. This one dish had lots of crud on it built up over time. So I spent maybe ten minutes scraping it all off. My coworker made a joke about it taking me so long, hinting that I needed to move on already. I didn’t get the hint and had to have other employees help me finish up so everybody could leave on time.

My next shift I showed up late to work again. The boss wasn’t happy. She took me into the back office and said “I gotta fire you”. I was sad about getting fired so quickly, but also relieved that I wouldn’t have to be in that overwhelming environment any more. I realized there was no way I’d be able to work fast food. I was too slow.

Manual Labor

After fast food, I tried a job doing manual labor. My trainer walked to our work area, turned halfway around, and stared at me. I knew by the way he was looking at me that he was expecting me to do something, but I didn’t know what. So I stood there until he finally told me to come with him.

He started speaking to me as if I were stupid, repeating himself slower and louder. The manager of the next job I would get also did the same. Of course, that never helps. I heard him the first time. What I needed was more context for what I was doing.

And then there was the forklift. I was meant to operate it, but it made a very loud beeping sound that I couldn’t stand. I suffered through it. Every night I had to pack items into a shipping container. The only way to finish in time was to throw the items onto the pile. Sometimes this would cause a loud avalanche of junk. Sometimes I threw an item on the pile and it made lots of noise sliding back down. I couldn’t handle the noise.

One night, after a few days working there, the manager came and handed me a radio. It was too loud. I asked the manager if I could wear headphones to reduce the volume. She told me no, that I had to hear the radio. It was too much.

When I woke up the next morning, I was still in sensory overload. I hadn’t even recovered after a full night’s sleep. I lied in bed staring at the ceiling for a while, not wanting to get up. I realized that I couldn’t expose myself to that noise every day. It was unsustainable. If I forced myself to continue, I didn’t know what would happen. I just knew it would be very bad. So I dropped off my uniform and quit.

Southern Illinois University Edwardsville

Fast forward to university. I got a job at information technology services (ITS) working at the help desk. Since I also studied there, it was very convenient. My duties were to answer phone calls and assist students who showed up in person. Socializing with strangers all day isn’t my strong suit. It was very draining and I had to ask for help from coworkers often. I kept being told I would “get the hang of it”, but I’m not sure I ever did. So I switched to the ITS team responsible for fixing and maintaining equipment in the labs and classrooms.

If you’ve been following my journal for a while, you might think I was successful in this role. I quit because it was distracting from my studies and I didn’t want to troubleshoot proprietary software any more. In fact I wrote an entire entry about why I quit. I never got fired. But what I didn’t mention in that entry is that it’s basically impossible to get fired in that position. I knew a guy who refused to do any work during his shift and still didn’t get fired.

When I first started working there, it was obvious that my boss hated me. A coworker even said so. My boss sometimes got very impatient and shouted at me. We miscommunicated constantly. I decided to disclose my autism so he at least understood why we were miscommunicating so much and it turned out to be a wise decision.

Even after that, there were certain aspects of the job that I wasn’t asked to do. My boss just came out and said there were certain things the guy that came after me was better at, so he got those tasks instead of me.

In a normal competitive workplace where employees can be fired, the employees who refused to work probably would’ve been fired on the spot. Given that I was at least trying to do my job, they would’ve been fired before me. But I’m not sure I would’ve stayed employed for long to begin with given that my boss initially hated me. He didn’t have patience for somebody who takes extra time to understand instructions.

Nursing Home

Long after I stopped working for SIUe, I got hired at a nursing home as a janitor. Just like with the fast food and manual labor, I wasn’t learning fast enough. We were taught too many things in one day. The manager told me to write things down, but there was no time.

I had no prior experience as a janitor. I couldn’t remember what to do or when to do it. I asked my trainer for how long I’d be trained, because that was how long I expected to be able to keep the job. The moment I was left to my own devices, I’d be utterly lost and most likely fired.

I was very bothered by the way the elderly were treated there. I felt that the way I was taught to treat elderly people was unacceptable. As I cleaned their rooms, some of them asked for favors. I was instructed to nod and ignore them and they’d forget about it after I left. I was told it “wasn’t my job” to tend to them. Fair enough, but my trainer never even went for a care worker.

We had to work at such a rapid pace that there wasn’t time to spend even a few moments getting an elderly person a care worker. We didn’t even have time to clean everything we were supposed to clean. The nursing home was cutting corners to reduce costs, which resulted in uncleanliness and poor elderly care.

So that bothered me a lot. It wasn’t just “Oh I dislike some aspect of this job”. No. These old people were not being treated right. And I couldn’t remember how to do anything without my trainer constantly helping me. So I quit.

Bus Company

After quitting the nursing home, I found a job at a bus company where I was responsible for watching over special needs students of all ages. Socializing with them wasn’t too draining since special needs people tend to be more tolerant of differences than neurotypicals. But after months of working there, I still couldn’t remember my bus route nor the order the students got on and off the bus nor where each student got dropped off. And the schedule kept changing, so every time I got a new bus driver who didn’t know the route, it was a mess.

At first I tried to write down the students’ names and the route on paper, but that didn’t help me. So I tried using GPS to help new drivers navigate my route, but I was told that being on my phone wasn’t allowed. I explained that I avoid using smartphones for things like texting anyways, but that didn’t seem to matter. I still wasn’t allowed to use it.

To top it all off, I was very tired every day because of my atypical sleep schedule. Some days I barely held my eyes open. I blame the extreme tiredness for the mistake which got me fired. I think if I’d been well rested, I wouldn’t have made that mistake.

I could’ve tried sleeping pills, but they’re not intended for long-term use. I’ve heard that medicinally induced sleep isn’t the same as natural sleep anyways.

Haketilo

A year ago, I made a journal entry thinking about what career I wanted. I imagined my dream career as one where I got paid to write free software. I was lucky enough to stumble upon a software project called Haketilo, which is a browser extension to take back the web. When I initially ran across it, it wasn’t funded. I was just interested in it.

When it got funded by NLnet, it became what I thought was the perfect career opportunity for me: an ethical, socially important, funded software project. Wojciech, lead developer of Haketilo and subject of one of my journal entries, was just as fanatical about free software as me. So I didn’t even have to worry about the project management tools being proprietary. What a great career opportunity, right? I gave a LibrePlanet presentation about Haketilo and contributed ideas, but I quickly lost motivation. I still don’t fully understand why.

For contrast, I somehow found the motivation to work for months at a bus company where I was sleep deprived, underemployed, anxious about the loud screaming children, and unable to perform basic job duties like road navigation. Yet I couldn’t find the motivation to even start on a remote free software job that would help my career and I could work whenever I want.

I thought maybe what I need is a more structured work setting. All the work I’ve done in life whether for a job or for school, I’ve done in a structured setting, with one exception: this journal. Thinking about things and sharing my thoughts like I am in this journal is a kind of special interest for me. Unfortunately nobody pays me to do this. Maybe I’ll consider becoming an author.

Can I Work?

So far, I have a history of struggling to stay employed. I struggle to maintain motivation for anything that isn’t a special interest. I may have to search for an employment program for people with autism. Or I might have to face the reality that I just can’t work. It’s not something I would’ve accepted years ago, but given my struggle keeping a job, I’m not sure I can find one where my autistic symptoms aren’t a problem.

I know a lot of people right now are probably thinking that I’m wrong and that I definitely can work. They’re thinking “Nick, you seem capable, competent, and smart. Surely you can find a job”. But I am not capable, competent, or smart in many critical job skills.

I can’t understand what others want a lot of the time. I have a hard time remembering verbal instructions. I have trouble abstracting tasks into larger goals. And because of the differences in my brain structure, I’m probably incapable of ever learning those skills to a satisfactory level.

Just because I’m introspective enough to know all this about myself and articulate enough to explain it doesn’t mean I have job skills. It took me many years to realize all this and I’m still learning things. There was a time when I didn’t even know I was different from others. Every person has different skills and abilities. Being good at one thing doesn’t mean you’re good at other things. Writing an online journal doesn’t mean you can keep a job.

At least I’m not alone in my struggle for employment. Only around one in five autistic adults are in any kind of employment. Autism makes it very challenging to get and keep a job. All I can do is try new directions, make more mistakes, and not beat myself up for failing.

Conclusion

I think what I wrote here is more than sufficient to give me credibility on the subject of autism. If after reading all this, you’re still not convinced I have autism, then nothing will convince you.

In the future, I plan to write more about autism. Since I don’t have a formal diagnosis yet, this entry can serve as my supporting evidence that I’m qualified to speak on autism. This is my longest entry yet by far. It took a lot of work, so I’d appreciate feedback and if you want to hear more from me, please subscribe to my Atom feed.

Thanks for reading.