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Autism: A Job on Its Own

Hello! An unnamed person once wondered why I didn’t “just get a job.” At the time of the incident, it seemed such as I was a professional student. It turns out that I have autism. Being on the spectrum makes getting through most days a job of its own. The only problem? It doesn’t pay! The same holds true with the job of worrying. I’d like to take you on a tour of common events that happen every day that make it hard to “get everything right” in the same day. It can be exhausting to get “one thing” entirely correct during a day. For most people, it’s natural.

So, it’s morning and I get up. There are many things to think about. It can be taxing when the mind has so many things competing for attention. The unpleasant dreams the night before that I don’t want to think about are one item. Other items, including things that should be habits such as combing my hair, taking my medications, etc. get done, but I have to consciously think about them.

Speaking of medication, having a divided medicine container makes managing my medicine easier, with everything I have to take. Of course, stuff like my hair might be easy to do the first time, but it’s easy not to think about re-combing it when I get up from a nap. It would seem to me once I fix up for a day, that I should be fixed up for that day, though it doesn’t prove true. If I do actually think about it, there may be something else I should be attending to that I’m not thinking about.

Most people have appointments. With the way my mind works, looming appointments of any kind easily will take over my mind. This is true whether it’s a neutral appointment for me later in the day like a Nucala appointment (a kind of shot for asthma) in Carlisle, a routine Focus appointment, or an appointment for someone else like our dog, Jenna. Her appointments are mostly in Lancaster. The appointment can be later in the day or simply later in the week but it is on my mind, and distracts me. I don’t get much done when a Lancaster Specialty Vet appointment is in the near future.

For those who don’t know, Jenna is our cute little Mal-shi (a designer dog that is part Maltese and part Shih Tzu). She unfortunately has two chronic health problems: type one diabetes and a stomach mass that can’t be removed. With the way my mind works, I’m always afraid of what the doctors will say. The appointments are in Lancaster which are about an hour and a half away each direction. This does not take into account the appointment time and any waiting time. Even when I do hear the results, I’m afraid that there’s more to it that I will find out about later when my parents come home. It makes for a long and stressful day. Plus, our other dog is distressed at home while she’s gone. I also seem not to be able to get things done that day because of the appointment.

Many people seem to be good with fitting in activities a little here and a little there in between appointments or whatever. If I know I only have ten or fifteen minutes before I need to do something, that is all I can focus on, thus getting nothing accomplished. The reason is because I need to focus on the time that I need to be ready to do such task, and I need to keep checking the time so that I don’t start it late or forget about it. Even something like a 10:45AM FOCUS appointment can distract me when I get up, since I do have to get fixed up for it, and I don’t have a sense of time. Time is a spatial concept. Spatial concepts are a challenge for me. For longer periods of time like on Thursday mornings before FOCUS, or before it’s time to help put the dogs to bed, I can get stuff accomplished, but there’s the nagging feeling in the back of my mind which can distract me. I don’t want to be late, but I also don’t want to wait fifteen extra minutes ahead of time either, simply to make sure I am there on time.

As mentioned in another blog, the appearance of my clothes can be a problem. Twisted waist bands, socks put on wrong, or messed up collars. Some things such as the waist bands can be correct initially, but messed up later in the day. It is hard to focus on everything that can possibly need my attention when it comes to my appearance, at all times during the day. Especially when social skills aren’t my thing anyway!

It’s important to have friends. I do like talking to people that I am comfortable with, like family. Sometimes it seems such as I don’t have enough time to talk to certain people. My brother living in Taiwan is especially hard, as I’m really close to him, and since the stupid pandemic started, Taiwan has had its borders shut. Well, it might be possible to get in right now, but not without “jumping through a lot of hoops” which makes it basically impossible anyway. Seeing him in person is the best, and none of us have seen him since February 2020.

Anyway, meeting new people, or talking to unfamiliar people is a different story. I really don’t enjoy this. It’s hard and taxing the times that I do it. The small talk that people do in stores tires me out when I choose to do it. Sometimes I’ll do it since it’s a social goal, but other times I’m too burned out for one reason or another. I’m not in to social hubs such as bars where many people meet. When I was around a lot of people like in college, I simply didn’t meet them. It was hard when I needed to speak and work with classmates. Any friend outside the family that I have really is a miracle in the framework of my comfort level socially. I have a social goal at FOCUS that I work on, but I don’t feel like my comfort level has changed much. I just have made more of an effort. Also, people and friends move on, and go their separate ways at times. It happens to everyone; I’m not exempt, and it’s nobody’s cup of tea. It can also leave the concern that I could have periods of time with no friends, since social situations are difficult. Luckily, I have always had at least one friend.

Social situations at family gatherings aren’t any easier. I keep to myself. Interestingly, I actually do dramatically better one on one with relatives.

At one time I was on the party kick. I wanted a birthday party every year, which wasn’t really appropriate. It wasn’t the party that was important, but the concept of a party that was important: including birthday cake, and most importantly lots of blown-up balloons!

Certain times of day cause anxiety. For me it’s supper time and late evening after the dogs go to bed. For the former, it’s because of the news, and the latter, it’s because it will be soon time to go to bed which is laden in rituals.

People need to know what is happening. The trouble is the events lately are so bad out there, and there seem to be many of them. It’s hard to tune them out. Also, the shows that my parents enjoy are aired between 5:00PM to 6:59PM, which is during the standard time to cook and eat. My Mom enjoys a show at 7:00PM, as well. With the ongoing pandemic as well as the war in Ukraine, anything on the news can be difficult to hear.

COVID-19 information and the protocol itself is exhausting. I want to be safe, but have it the “old way” (pre-pandemic way.) I saved up money to go to Disney World. I saved the money for a long period of time, and was planning on going this year with my brother, but it didn’t work thanks to that virus. Another thing that I would like to do is visit my brother, but then again, it’s a no go! Why? Simple! The virus. The virus could easily make a third attack this year, as well. My family is planning on going on a cruise, and taking Dave (my brother) along. Well, it seems likely that this won’t happen due to the Covid policy in Taiwan.

This brings up another good point. When I think about everything going on this year, everything I hear on the news, and the on-going problem with the dog, it’s easy for me to retrogress into my strong dislike for the number twenty-two since the year is 2022. I have never liked the number, but I had for a period of time accepted it. Though the issue hasn’t come back yet, I have to be vigilant, since I have a tendency to put the blame of things, on numbers. On the other hand, numbers like twenty-six make me happy, and feel good. It does work both ways.

Going places tell a story. The story is usually of some event in the past. If the association is a good association, then naturally I like the area. Less positive associations will make an area a place I’d rather not go. Houses changing their siding or shutter colors, new developments getting built, and barns being torn down are challenges that I face that can take enjoyment out of going some places. The destination of a trip can play an important factor. Some important “trips” (road combinations) have no meaningful place that they lead to anymore. Hanover is a classic example. They used to have Kiddie City, the toy store, that closed in 1993, and the mall there used to be filled with normal stores with bright colorful lights. Now the mall is empty with a few strange stores, and new shopping complexes are on the rise. Covid also didn’t help any shopping mall.

Loomers! This my name for nasty events that are in the future, but haunt the present that include such nasty items as health problems, and storm warnings. These can certainly impact my focus, and keep me from doing stuff that day.

OCD is an activity of its own. I don’t want it, and I can’t control it. If I happen to have an OCD attack during the day, it can actually keep me from accomplishing anything for the rest of the day. This is even true if the trigger happened in the morning. I perseverate on the OCD event.

People can criticize me for thinking so much about the past. The trouble is that the present (where they think I should stay) doesn’t really exist. It becomes the most recent part of the past in a second, and merges with the future. The future is chalked with scary things. Also, the current landscape of events isn’t always something rosy either. I would rather think about my childhood where I generally was happy, than think about the pandemic, and all the other garbage going on in the current time.

Driving is a hobby of mine. There can still be issues. Tractor-trailers can frighten me if they come barreling in my direction as they’re large, and unpredictable. I’m not sure how to handle them, and it’s hard to get a person to explain to me how to handle the situation after it happens. People who honk their horns at me can startle me. Also, other unfamiliar situations that happen every here and there, on the road, can be stressful. And flagmen can’t be forgotten. The ones making hand signals with their hands or using a flag to make the signals are hard to understand. A flag person of this type yelled at me once for messing him up, when I didn’t understand what he wanted me to do. Flag people with stop signs are easy to understand, thus not a problem.

My dad and I have started to write children’s books which actually is sort of a job for me. I enjoy it. One issue I do have is with illustrations. It’s hard to get everybody on the same page about what to put in the pictures, and whether the picture is illustrated well enough. Sometimes a person has to pick their battles, and it can be hard to determine which battles to pick. It can be quite stressful for me. Sometimes we need to resubmit pictures several times until the artist’s work is acceptable to us.

Other issues include having early appointments. Though I now get up early in the morning, being required to get up at a certain time is enough to make it hard to sleep the night before, thus making me tired and sleepy the next day. Then I’m afraid to drive because I might get sleepy.

Stopping projects in the middle is a challenge as I’m afraid I’ll forget where I was in that project. Sometimes I’ll have to start a project over again for this very reason.

“That time of night” as I call it, is a major problem. This is the time between when the dogs go to bed and I go to bed. Though there is some time in between the two events, my stress will usually go in high alert after the dogs are in bed. It’s hard to relax. It would be easier to sleep if I could relax. There are many rituals I have to do every night as described in a previous blog.

Night time is a time of the unknown. Thus, various sounds, “flashes of light”, and other things can put me on high alert. One doesn’t know what is going on while they sleep, and at night everyone sleeps except thieves, robbers, and a few people who work third shift. When everybody is sleeping, nobody is attending to the various electronics including lamps, the electric candles in the windows, heat registers, water faucets, etc. Items can take on a “life” of their own once it gets dark in the house.

Another issue while I’m trying to sleep are strange noises. I have “heard” many strange noises on and off over the last months in the middle of the night. They can wake me up, other times they keep me awake. Sometimes the next day, I ask what the noise was that I heard in the middle of the night. Other times I hear strange noises while getting ready for bed. I need to ask about them too, but no one else knows or heard what I heard.

Writing this blog was exhausting. It took a lot out of me just thinking about everything that could happen during a day, so that I could write it down, and share it with you the reader. One final and important note is that the next day the cycle repeats! This basically means that it’s hard to get rest from this pattern. With all this stress, and worry, it’s no wonder I don’t have a job. Each day is a job!

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