Learning how to handle meltdowns

One major topic related to autism I have yet to discuss is meltdowns. I think I’ve shied away from this topic because I largely have not had any public meltdowns in the past couple decades of my life. They’re not something adults like to admit that they have. But they happen to everyone, including me, and they happen to autistic people with far more frequency than neurotypicals. Adults just do a better job at hiding them as they grow older.

I recently read The PDA Paradox by Harry Thompson Felicity Evans, and it had an excellently written passage about meltdowns. Meltdowns are a physiological response a person’s body has to stress. All adults are capable of having meltdowns when they get pushed to the brink; autistic adults just are able to have them more easily. Punishing meltdowns isn’t what makes them go away, and can sometimes make them worse. The only thing that can make meltdowns go away is removing the stressors that are present.

Too many parents, Thompson says, take meltdowns personally and don’t look for the source of their children’s discontent. A child is not always melting down because they want to rebel against you. They are melting down because they are overwhelmed. Being overwhelmed can take on many forms. Thompson describes a few in the book. He includes one time where he melted down after a series of very small stressors that accumulated throughout the day. Individually, none of these stressors would have come close to pushing Thompson towards a meltdown, but when combined altogether, they caused him to act out violently towards his parents. His parents did not know what was wrong, and in that situation, telling them was difficult. The other point Thompson makes is that autistic people do not want to have meltdowns, just as the rest of the world doesn’t want to deal with them. If an autistic person starts trying to remove themselves from a situation and seeking a nice quiet place to gather themselves away from people, they may be trying to prevent a meltdown.

Meltdowns have a stereotypical image presented by society of arms flapping, barely intelligible language, cursing, and violent behavior. We are all capable of reaching this point. But sometimes, adult meltdowns look different, and these are less socially accepted. When people become adults, we know that classic meltdown behavior is intolerable, and our body and brain are able to prevent us from exhibiting these behaviors. But, we still need to melt down, and so we show this behavior in other ways. When I was at Measurement Inc. helping lead a team of 10 people that put together standardized tests, the job was unquestionably the most stressful job I’ve ever had. There were times I went to the bathroom (always a safe option, if available) to allow myself to refocus before saying something I would regret. There were times early in the job where I got in trouble for speaking my mind about the job. We had to undergo a series of stringent edits on a test that was written poorly, and in my notes to myself, I cursed to describe how bad the test was. Someone saw how I had described the test, printed my notes out, and showed them to the boss. I luckily had a very understanding boss and did not get in my trouble, but it opened my eyes a bit. Yes, I may have thought I was melting down in a way that only I could see by writing notes to myself about a test. But another person saw the meltdown triggers, read what was on my computer screen, and decided to take action. From that experience, I learned what my limit was, and for the rest of that job, I would remove myself from stressful situations more quickly if I realized that meltdown triggers were about to occur.

As said above, no one likes having meltdowns. I dislike that my triggers seem to be shorter than other people’s. It causes me to take less chances socially and in life, because I am worried I will push myself to a meltdown and hurt somebody else’s feelings. The remorse we feel towards the other person is awful after meltdowns, as well. We know that no one wants to feel exposed to this behavior, and we feel doubly bad that we may have hurt someone we care about.

My main purposes of writing this piece today are to share that meltdowns are unavoidable and share that they may not always look the way you think they will look. Society recognizes and even accepts the classic meltdown, but they do not recognize when adults mask, send angry e-mails, and act out towards others in ways they might not ordinarily act. These are meltdowns too, and because they are more subtle, they are less socially accepted, because it is easy to think the person is just being a jerk. While sometimes people are just jerks to others, and they do deserve consequences for their actions, it is always important when somebody is acting out in a way they do not ordinarily act to consider the environment around them. Perhaps that person has a legitimate reason to be having a bad day. If they do come back to you later and show genuine remorse for their actions, you will know that perhaps they were pushed to the brink. In my case, I had a meltdown within the first month of working a new job, and was lucky enough to have a boss that understood that this was an aberration and I did not deserve to get fired for the first offense. While we all need to try to do what is socially accepted of us, everyone has bad days, and preventing the causes of these bad days can be even more important than preventing the unwanted behaviors themselves.

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Life update: Nervous musings about getting “back to normal”

So, it’s March now, and I haven’t checked in in a couple months, but it appears like the world is slowly inching closer to getting back to normal. I’ve thought a lot lately about what normal is. What do I want to get back to, and what needs to change? It’s almost weird to me to go back and read some of my old entries, where I talk about things like the importance of making good eye contact and using an appropriate tone of voice and how to build relationships with strangers. These are things that plainly haven’t been relevant in the past year. But clearly soon, we all want to get back to socializing at least a little bit. My pastor mentioned that one consideration of going back to church is that it will be awkward at first, because no one has used their “social muscles” in a while. We may forget how we interacted with each other in the first place and need to carve a new path. It may be harder work than we anticipate.

My own pandemic journey has been difficult. During the first few months, I felt like I was thriving. Suddenly with everything being on Zoom, it became much easier for me to join new organizations and groups of people, and I did my best to try everything, to see what worked and didn’t work. I got a chance to make new friends by talking to a few people one-on-one both online and in socially distant hangouts that I just had not had the chance to talk to before, because life was too busy, and the dynamics of normal group hangouts are harder for me to navigate. I don’t generally think of extra free quiet time as a burden, so I was able to take some of that time to write and read and try to better myself. But over the past few months, as the pandemic has dragged on, I’ve begun to run out of things to do. I’ve talked to every person I can possibly talk to out of my preexisting relationships, and going out and meeting complete strangers is just not something people are doing right now. I’ve run out of hobbies, of books to read and music to listen to. And I can feel those “social muscles” growing more stale with each passing day. It seems like others are burning out as well, because suddenly the “Zoom hangout” schedule is dying down. We’re all tired of it.

One thing that has been especially hard for me that I imagine is hard for some other people with autism is that it feels like my world has been flipped upside down for the second time. I’ve always worked so hard to conform to rules of the world and to fit in. It’s something that takes extra effort for me. Now suddenly, I am having to make an even more conscious effort to do the opposite things of what I have been trying to do my whole life. Suddenly, it’s not OK to reach out to too many new people. Suddenly, my facial expressions don’t matter in public because I am wearing a mask. Suddenly, even asking established friends to do a socially distanced hangout is a situation fraught with complications, and it becomes harder to read whether a person doesn’t want to spend time with you because COVID cases are spiking or if they just don’t want to spend time with you. On top of all this, I’ve had to put going to church, traveling, and going to concerts completely on pause for an entire year. Suddenly, my interests just don’t feel like they are valid interests anymore. I have to find alternate paths, and hope that when we do finally reach the end of this pandemic people will want to do these things again.

It’s no wonder that with all of this going on for an entire year I’ve noticed myself beginning to become bitter and tired. My sense of humor has always been acerbic, but I’m even beginning to lash out at people in ways I don’t ordinarily. My sense of optimism for the coming year is great, and I feel fortunate to be vaccinated and begin to make modest plans to have small gatherings of family and friends that I have not seen in awhile that are also vaccinated. But as my hope grows, my worry grows with it. I felt like this pandemic would be over in 2 weeks, and then it would be over in June, and then it might be over soon when cases started to drop here in September. How will it find a way to not be over this time? I don’t want to get burned again, so I swallow my hope and bite my tongue instead.

I realize that this is not the most hopeful entry I’ve ever written, but I thought it might be helpful to put into words what I am feeling in case others are feeling the same. I am ready to go out and see other people and try to put my life back together the second it is safe to do so, but it is going to be hard work. We are all tired. We are all ornery. We are all paranoid and ready for things to change for the worse at any moment. But right now, all of that is OK. We are all doing well just to be surviving all of this. The more we can understand all these things about each other when we begin to make those first awkward steps back into normalcy, the better off we all will be.

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And now for something completely different.. (part 2)

Here is the second part of my science fiction story “Stairs Only, Please”. I would recommend reading the first part before this one (posted yesterday) if you have not already done so. I hope everyone has enjoyed this diversion from my usual entries this week.

CHAPTER 7

“Wow, my neighbor today is awfully noisy, yet again,” Rowlfelier thought to himself. At first, it had been a momentary amusement. Rowlfelier never ever heard a peep from Bauve for the first several months they had lived next door to each other. He wouldn’t have even known he had a neighbor if he hadn’t seen Bauve struggling home with bags full of ham, Brie cheese, and Alka Seltzer in quantities no one human could ever need for themselves. But now, something was different. The banging was loud. It was constant. And it was angry.

It had already been a very bizarre and not very fun week for Rowlfelier. For one, he discovered the elevator was missing. Rowlfelier hated the elevator, and was glad to see it was gone, but it still was disarming to come home from work one day and see that it had disappeared during that time.

While the elevator never haunted Rowlfelier to quite the same extent as Bauve, it had always haunted him. Rowlfelier had gotten nasty electric shocks from trying to go in the entrance before. He had noticed that no matter where he left the elevator in the house, it always seemed to turn up in a different place. And on days when Rowlfelier had to use the elevator at work, his elevator at home would make occasional banging noises in the background, almost as if it were jealous of Rowlfelier seeing other elevators. Still, elevators are hard to dispose of, and it is not exactly like the elevator had ever openly tried to harm Rowlfelier, so he let all these things go.

As for Rowlfelier’s job, things were getting very weird there too. Rowlfelier loved his job working in-person at a government office, but for a week now, he had been working from home. Something about a virus going round, people said. Could kill you, they said. Rowlfelier had even seen people out wearing masks when he took his usual walk around the block. He really didn’t like working from home. He liked to dress up and feel like a Very Important Person and go out to lunch with his friends. But now, Bauve wondered if Chili’s would even stay in business from losing so much money from his friend group’s weekly three-margarita lunches. And most importantly and unfortunately, Bauve was stuck alone. Just like Bauve.

Bauve’s lifestyle had seemed so odd to him for so long, but now Rowlfelier was going to be forced to live it himself. They were saying on the news though that the President had said it would only take 30 days to stop the spread, so he hoped he would be back to work next month. Still, that seemed like a long time away.

But, as bad as sitting in silence was, being able to hear this banging constantly was worse. After a week, Rowlfelier had had enough. He was going to have to call the police and tell them about it. He was worried Bauve was going crazy in there. But before he resorted to that, he decided it would be worthwhile to try to go over and talk to Bauve himself. After all, he’d never disliked the guy. Just found him a little strange. And he would bring his gun, concealed just to be safe. What could go wrong? Rowlfelier was beginning to be genuinely worried.

CHAPTER 8

Sure enough, the banging got louder as Rowlfelier approached the house. He did not know what to expect, but felt confident his gun would protect him. Bracing himself for whatever horrors may await inside, Rowlfelier sheepishly knocked on the door.

Knock knock knock. BANGBANGBANGBANGBANG….Knock. Knock….Knock….BANGBANGBANGBANG…Knock….Knock….BANG. BANG. BANG. BANG…..Knock knock knock….DING.

Rowlfelier continued to hear bangs, but didn’t hear anybody attempting to answer the door. He was about to brace himself when suddenly, he heard it…DING. It was his elevator!

Rowlfelier always knew the elevator had been up to no good, and this proved it. Suddenly, thoughts of calling the police raced from Rowfelier’s mind. He had to save Bauve. And fast. Rowlfelier opened the door and ran in the house.

CHAPTER 9

Piles of papers and clothes were stacked all over the living room, and Rowlfelier even gagged a bit as he smelled what appeared to be rotting food in the refrigerator, but he pressed on. Rowlfelier wasn’t leaving until he found either Bauve or the elevator. Bauve lived in a tiny house, so he knew it wouldn’t take too long. And sure enough, there the elevator was.

Rowlfelier waited to go in the elevator, but he decided once for old times’ sake to shoot at it and see if anything happened. Nothing happened except wasted ammunition, so Rowlfelier stepped inside and instantly knew that he had been right all along. For this was a bad bad elevator, and Bauve was in a world of hurt.

There appeared to be hundreds upon hundreds of unmarked buttons. A few had been marked with sticky notes with what appeared to be human writing on them, and he realized Bauve had been living with this situation for quite a while. Since Rowlfelier knew Bauve wasn’t on the main floor, curiosity got the better of him and he decided to hit one of the buttons, and he figured hitting the button sticky marked “food” seemed like a harmless place to start. It took him a second to gather the courage, but Rowlfelier hit the button. He heard the doors close and a ding, but suddenly the walls began to spin around Rowlfelier, and they kept spinning, spinning, faster and faster, and Bauve’s BANGBANGBANGS grew louder, and spinning, and circling some more, and suddenly Bauve’s BANGBANGBANGS weren’t the only BANGBANGBANGS anymore, and then everything went dark and silent.

CHAPTER 10

“Hello? Are you alive? Are you alive?”

When Rowlfelier came to, he heard a quiet voice steadily growing louder and more intense, and he realized slowly that he was in Bauve’s living room, so hopefully this man talking to him was Bauve. Bauve grunted a few times and then said “Yes, I’m here.”

Suddenly, Rowlfelier heard a low, guttural moan that startled him and made him think about getting up and fleeing from the house.

“I’m sorry,” Bauve said afterward. “I didn’t mean to startle you”. “It’s just that” and then he started speaking so fast Rowlfelier could barely understand him at times, about being trapped in the house for weeks, about the mysterious elevator, about meeting some guy named Bilo, and it all seemed to be very frightening and intense to him.

“We have to get out of here,” Bauve said. “I don’t know where we would go, but we have to get out of here.”

And suddenly, the two men noticed the elevator was gone. They were perplexed and both started walking around the house, wondering to see where it might be, wondering if this experience they had just gone through was somehow a figment of their imagination, but both confused and unable to find the elevator.

Rowlfelier said, “It must be my fault because I tried to get on the thing and save you and as soon as I did, I don’t remember anything else.”

And Bauve said, “Wait a second. That might be it.”

“What do you mean?”

“The elevator might break as soon as a second person gets on it. I was just on it myself getting food, and then I got bumped back to my living room too.”

“Wow, that’s brilliant if it’s true. Well, to be honest, I never liked you much, Bauve, but if we managed to get rid of that elevator, I’m happy. I always knew there was something wrong with that thing.”

“I’ve always…loved being alone,” Bauve continued. “But these past few weeks have been another level that I have had a really hard time with. Thank you for saving me.”

“You’re welcome, but I don’t even know how I did it,” Rowlfelier said.

The two men spent the rest of the day cleaning up Bauve’s apartment, getting rid of the rotten food and stacks of papers. For it was Sunday, and Bauve did have to return to his job submitting pointless government documents to Mitch the next day.

By the time Rowlfelier headed home for the day, Bauve appeared to be less angry and agitated, and almost seemed like a normal person to Rowlfelier. Rowlfelier thought, “I’ve thought I’ve had it hard feeling like I’m shut in my house because of the virus, but this man literally has been shut in his house.”

“Nice to meet you,” Rowlfelier said. “Hope to see you again soon. I’m glad this elevator is out of both our lives now.”

“It was great to meet you too,” Bauve said. And suddenly there was hope again, for Bauve began to feel like he had maybe even made another friend, and a friend who had not yet perished from the mysterious virus, at that.

As for the elevator, no one ever saw it again in the state of Vermont for two years, until it mysteriously turned up in Senator Bernie Sanders’ Vermont office shortly after he lost the Presidential election for the second time. Bernie must use his designer mittens to open the elevator to prevent himself from getting electric shocked, as that could kill him at such an old age. But no one could ever really want to harm Bernie, and thus the elevator has settled into old age, though it is wearying of “Medicare for All” stickers being placed in the old crevices where Bauve’s sticky notes used to reside.

Bauve went to bed and, exhausted, prepared himself for work the next day. Bauve thought that after he finished completing seven hours of pointless tasks for Mitch, he might even watch the sunset and enjoy being outside his house for a bit. But Bauve never would made it into work.

CHAPTER 11

Monday dawned, and Bauve did not feel well. He knew that technically anyone could work from home no matter how sick they were, but he didn’t feel like he was well enough to do even that. He fired off an e-mail to his boss, and CC’ed a couple of upper management bosses, including Mitch, that he wouldn’t be there. He figured Mitch wouldn’t mind because he was busy at a trial that afternoon anyway. An obstruction of progress would not be a setback today.

Bauve called an Uber to take him to the hospital, for he did not own a car. Bauve felt feverish, and he noticed that when he started coughing in the car, the Uber driver looked at him funny and seemed quite eager to drop him off. When he got to the hospital, things got even worse.

Everyone was wearing masks and seemed to want to spend as little time around everyone else, including Bauve, as possible. Bauve eventually got checked in and immediately admitted to stay in a bed overnight. People looked at Bauve as a freak of nature, and he didn’t realize what was wrong. Bauve had always grown up being looked at as a freak of nature. He never knew how to make friends, except for Pace, and always seemed just a little bit off to everyone else, but didn’t know why. This bothered him in elementary school, but later, Bauve just accepted it. He’d learned to be happy with being himself.

But this was different. The past few weeks in the elevator not being able to get out of his house had been terrifying. And now this hospital was terrifying too. Bauve wondered if this all had something to do with the voicemail message he had heard when he called Bilo. Some virus going around. Could he have it?

Bauve had had an interesting few weeks. He indeed had had a more interesting few weeks than he ever had in his life, and it was quite too much for him. He literally couldn’t get out of his house for over a month, but eventually he learned to adapt to that. But when Bauve finally did make it out, the world seemed to have changed more in the previous month than in his thirty-three previous years on the planet. Suddenly, everyone wanted to be alone, and people were acting really bizarrely about it. Even our Bauve who had just spent a month in his house dealing with the effects of a bewitched elevator was a little weirded out by 2020.

All at once, Bauve had had enough. He jumped out of bed and ran out of the hospital. Any time he heard someone scream after him, he just ran faster. He did not realize what other people might be thinking; he just needed to get out of there. Any physical discomfort he might have been feeling just didn’t matter anymore. One day, he’ll appreciate that there is a reason the world is choosing to stay home just like he always has. But for now, he just needed to go. He needed to see the blue sky, needed to feel the earth around him and bask in its embrace and see sunrises and sunsets and spontaneous adventures and weddings and funerals and just about anything. In fact, if you glimpse hard enough, you may still see him running today. The only place you are guaranteed never to find Bauve is an elevator. Stairs only, please.

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And now for something completely different… (part 1)

It’s been a busy time in my life these past couple months. I’ve been working on a couple of big personal projects, and unlike some other projects, I would rather not blog about these until they’re finished. I’ve actually been writing some fiction though, and in the absence of other interesting things to share right now, I thought I would share a short story I’ve been working on recently. It appears to start off as just a simple, whimsical science fiction story (and parts of the beginning are based on a piece I wrote when I was in 4th grade!) but later on, the piece becomes more topical and related to world events from the past year. The story is a little over 5000 words so I am posting it in two parts, chapters 1-6 and chapters 7-11; come back for part 2 tomorrow! It is called “Stairs Only, Please”.

Stairs Only, Please

CHAPTER 1

Once there was a man. He was a bachelor, unwilling to marry, although his mother said he had to. They lived in America, so he ran away to the outskirts of Canada and hoped the mother wouldn’t find him. After she died, he felt it safe to leave upon his own account, so he decided to move into a house in Vermont just below the Canadian border. He had just enough money to buy it. So, he moved in and found that it was just like the house in his dreams. It was a one-floor and just suitable for him to live in. It had a small chimney in the corner, and it had a bedroom, a bathroom, and an Everything-Else-Room. And you must understand that this man loved living in cramped quarters (it was no more than 600 square feet in total). For he was a DaBuveMcOir, which means “person who strongly enjoys living in tight quarters” when translated from French originality into English. We will call him “Bauve”. He was a solitary man, as I told you previously, never wishing for company. And he never got any. For the house was windowless.

He only left the house to go to the grocery store once every two weeks. His job could be done entirely from home, as he worked for a government website and never had to see or communicate with another person except via e-mail. His job was to write meaningless documents and save them into meaningless files in meaningless folders and submit them to the meaningless void, where his boss would read them, approve them, and pass them on to his boss’s boss, who would pass them on to his boss’s boss’ boss, who would pass them on ad nauseam until, 2 months later, his boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss, Mitch, would take action on them.

But despite the pointlessness of his job and meaninglessness of his life, he was happy. Happy to stay comfortable in his tiny space, happy to work his way slowly through the 1000 greatest movies of all time on Netflix after work, happy to eat his crockpot meals and munch upon his snack of Triscuit crackers and sharp Brie cheese.

CHAPTER 2

One day, as usual, our Bauve had to go to the grocery store. It was a warm May day, and Bauve decided to walk to the store, as his doctor had told him he was lacking in vitamin D. About 20 minutes into his walk though, Bauve crossed the street a little too fast and heard a voice call him “Hey! Hey! Slow down!” Startled, Bauve tried to shrink his face inside his hoodie, but was unsuccessful.

“Hey friend, how are you doing?” Suddenly, the male voice changed tone sharply and was much gentler.

Bauve decided to be brave. “I’m doing well on this nice day. You?” His voice was almost a whisper.

“I’m great! It’s good to see you out here. My name is Bilo, it’s nice to meet you. I live across the street from you. What brings you outside today?”

“I’m going to get myself groceries”.

“Well, that’s certainly a good occasion to go out. Tell you what, what kind of foods do you like? Would you like it if I dropped off a meal at your house sometime?”

Bauve would love that, he told Bilo, and from there they had a quite relaxing conversation. Abruptly, in that distinct way that socially anxious people know all too well, Bauve had had enough and decided he needed to wrap things up.

“Well, it was great to see you today. I hope to see you around soon!”

“It was great to see you too. If you give me your number, I’ll try and bring that ham and Brie cheese by next week!”

They shook hands and departed, and Bauve left feeling, for only the second time in his life, like he had a friend. When he was 10, he met a boy on the playground, Pace. Pace was the only boy he met who was just a little quieter than the rest, and he seemed to always have time for Bauve. Pace had suddenly moved away to North Dakota without warning when Bauve was 13. Since then, Bauve focused all his efforts on succeeding at school and watching movies. Bauve had watched over 5000 movies in his life, and had had great relationships with many of the main characters.

But today, somehow, felt different. Bauve was a little uncomfortable about it, but happy all the same. He skipped along to the store to buy the same things he did every two weeks.

ChAPTER 3

Everyone has a time in their lives where they are content for some short period of time and then something goes wrong. Bauve walked home from the store ready to retreat into his house and enjoy the quiet again but feeling a strange, tingling sense of optimism he had never felt before. He was in a hurry because he had been gone 30 minutes longer than usual, and, because of that, he might be forced to watch one less movie today on his day off. But other than that, he was fine.

He knew as soon as he came up the street that something was different, but he didn’t know what. He entered his house same as he always did, brought his groceries in the same way he always did, put them away in the same places he always did, and lay down on the couch to watch a movie and snack on his crackers and Brie cheese. It was not until when he went to take the trash out that night, six hours and three movies later, that he noticed something was terribly amiss.

CHAPTER 4

The elevator waited patiently for 17 days for Bauve to leave his house. It was about to give up when suddenly a glorious sunny day came, and the elevator knew that Bauve’s weakness for Brie cheese would get the best of him. Then, the elevator took matters into its own hands and made Bauve’s house its own.

The elevator, much like Bauve, was in hiding itself. It was in a hurry to get away from the terrible Rowlfelier, Bauve’s next door neighbor, and knew that Rowlfelier wanted nothing more to do than get rid of it. So, while Bauve was gone and couldn’t notice, the elevator made the move.

The elevator had in fact been in hiding its entire life. You might be wondering what a giant elevator would be doing in Vermont. The simple answer is that it felt unwanted and attacked in Manhattan after people became less desirous of tall buildings, so it went on the run until it reached an abandoned house that it thought was safe. But when Rowlfelier moved in, it knew it was in trouble. Rowlfelier even came back from a Vermont hunting trip once with his friends and attempted to shoot, unsuccessfully at it. All the elevator wanted was a house it could hide in, and since he knew Bauve almost never left his dwelling, it would interfere least with Bauve’s life if he spent time in his house.

This wasn’t the worst of it, however.  To ensure it would never be found, the elevator had to stretch itself out and make Bauve extremely uncomfortable. The bewitched elevator took Bauve’s tiny 600 square foot apartment and stretched it so that it was seven hundred thirty floors long! It hoped that by stretching it could escape Rowlfelier, even for a few days, because Rowlfelier would never know to come looking for the elevator in that state. It also knew that it couldn’t operate correctly if there were no floors to go up or down to. So, 730 floors it was.

The elevator, amazingly, also did something worse than stretching the house to seven hundred thirty floors. He made Bauve’s “cramped quarters” floor number 456, so that when Bauve came in the house, he would see strange sights. Poor Bauve would have to go through an awful maze to get to his familiar “cramped quarters” floor. Only it wouldn’t be “cramped quarters” anymore.

Let me give you a quick tour of the new house. The first floor was the subfloor. The second floor was the floor. The third floor was the lower basement. The fourth floor was the middle basement. The fifth floor was the higher basement. The sixth floor was the story. Not our kind of story, mind you, not this one, but the story being the layer of elevation just below the understory.

These were all strange, peculiar floors with peculiar gadgets, and they were all musty, musty, musty. The elevator used an optical illusion, so that the seventh-through-two-hundred-seventy-seventh floors all looked the same, but something quite different happened every time you stepped into each of them. This made it easier for the elevator to hide on any of these floors, and run its Secret Dangerous Experiments. The two-hundred-seventy-eighth through three-hundred-fifty-eighth floors were all exceptionally large, and they all held the required rooms for palaces (15 bedrooms, 6 chambers, 15 business rooms, 4 dungeons, 1 kitchen (an excessively big kitchen), 35 rooms holding servants, and 5 rooms holding valuables. These were even better for hiding, in a different way. The three-hundred-fifty ninth-through-four-hundred-fifty-fifth floors held many, many, many things to eat and then the four-hundred-fifty-sixth floor was Bauve’s. As far as floors 457 through 730 were concerned, half of them were wardrobes with endless closets to get lost in and the other half were endless landfill mazes where the elevator spilled its garbage out.

Speaking of garbage, you may recall that Bauve was taking his garbage out when he noticed that something was very wrong. He tried to leave the house but could not find the door, which was odd to him because it was a small house. Bauve tried and tried but he couldn’t find the door, even as he went in a circle around his whole apartment. And then finally, Bauve did not find the door, but he did find the entrance to the elevator.

CHAPTER 5

Bauve woke up sore but pleased. For a man who liked cramped quarters after all, sleeping in a tiny elevator was not that unappealing. He had managed to find the button that closed the door because it was in the usual spot, and now he was ready to go exploring and finally get rid of his trash. But first, he needed to find something to eat.

After hitting six buttons, he finally found one of the floors that was full of food. He gorged himself on fresh ham, Brie cheese, and even a piece of coconut pie that appeared to be cooked fresh from the bakery. He looked around to see if he could find anyone that had possibly cooked the food, but found no one. Ordinarily, Bauve was not a Risk Taker and would not eat food that had come out of nowhere like this, but since he couldn’t even leave his house anymore, he figured he had nothing to lose.

Bauve’s next step was to try to find the door, or at least a place to get rid of his trash. Eventually, he settled on a floor that appeared to be completely empty and just have four empty rooms on it. He still hadn’t found the door, but it was better than nothing.

It was Sunday, and Bauve had to work the next day, but he found himself quite beginning to enjoy his day off, although he knew his boss Mitch would not be happy if he could not find his way to a computer before the beginning of the next day. He also began to really miss Bilo. He wondered if somehow this was all his fault. Bilo had been a rare moment of weakness for him. He talked to his new friend the way he had talked to no one else, and he really seemed to just want to be genuinely nice to him, which was unlike anyone Bauve had previously met in his life.

But because he had been gone so long, perhaps that is why his house had changed forever. He didn’t know, but he didn’t like it.

Eventually, he found a floor that was one of the palaces described above. After exploring the 20 richly furnished rooms on this floor, he found one with an antique rotary phone. He had Bilo’s number in his pocket still, and decided to try it on the rotary phone to see if it would work. However, when he started to slowly input numbers into the rotary phone, he got nothing but a nasty electric shock.

Daunted and a little sad, Bauve began to explore. Eventually, he would find his way out of this place. He would have to. About 2 in the afternoon, Bauve was finally greeted by a familiar sight…his old house! He finally found the floor where he originally lived. At least he could go to work, and Mitch would not be upset now. But he still could not leave. That being said, Bauve decided that safety was better than nothing, and if he went back on the elevator, he might not be able to find his way back. Exhausted, Bauve climbed into his bed, slept until morning, and logged on in time to complete very important government documents for his boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss’s boss, Mitch.

CHAPTER 6

The next few weeks passed without incident. Bauve is almost offensively boring to write about sometimes. But bear with me here. Bauve settled into a routine somewhat similar to his previous one, with the one big exception that he could not leave his house. He worked his meaningless government job Monday to Friday. Anytime he needed to dispose of his trash, he went on the elevator until he found the abandoned floor again. Occasionally, when he wanted an unusual snack, he would go on the elevator and explore the food floors. He would put sticky notes on the buttons of the elevator to denote which floor was which, and they seemed to work, as he always was able to find his way back to the floors he wanted to use. There still were several hundred buttons Bauve had yet to push, but given how terrified Bauve was of the whole endeavor, he decided maybe that was better anyway. Maybe, he was just meant to live like this.

But still, the outside world beckoned. For one, Bauve was running out of his normal food supply, although his house now seemed to have an endless supply of food anyway, so this wouldn’t be a problem. But a far more striking problem was Bilo. Bauve now couldn’t even leave his house to say hello. As far as having Bilo come over to drop food off at his house, Bauve was embarrassed about his situation. He wondered what a fine friend such as Bilo would say if he could come and find Bauve’s house in such disarray. So, Bauve did not call Bilo.

To be honest, Bauve began to wonder what his life would be like if he had never been able to get away from his mother and buy this house. What seemed like such an ideal situation had turned into such a nightmare. All Bauve ever wanted to enjoy was peace, solitude, Brie cheese, and Netflix’s 1000 greatest movies of all time. In particular, Bauve had tried to watch The Shining and Inception since everything had started to go haywire in his life, but couldn’t quite take the tension. Sisterhood of the Traveling Pants was more his speed, even though it was not on the 1000 greatest films list. He just was too angry and agitated all the time to take anything else, and he wondered if his brain would erode in this way over the course of several years. Maybe this is how the elevator planned to win victory over him. At first, Bauve thought he had won by managing to find a way to work around the prison the elevator had set for him. After all, as we all know, there is no need to see each other in person for work projects when Zoom meetings can do all the work for you. And yet at some point, even Bauve became sad, lonely, and paranoid, and had a difficult time dealing with the new 24/7 weirdness that his life had become.

And then one Friday night, he was suddenly fed up and his nerves got the better of him. While it had been an adjustment at first, it was nice to have this house with all this space and an endless supply of food. And yet, at his core, Bauve was lonely. While he had always wanted to spend his life alone, not even having the option of going outside was quite a different thought altogether. And so, one Friday night, he nervously dialed Bilo’s number on his cell phone.

Bauve waited and waited through 12 agonizing rings, and then he finally heard a voice mail message from a stern female voice:

“Bilo passed away on Monday, March 23, 2020 due to lingering symptoms from the Ibolwitzer virus. Donations in his honor may be made to Smithfield Funeral Home. Please everyone, stay inside your home as much as possible. This virus killed Bilo, and it could kill you next.”

Bauve’s first reaction was, oddly, to laugh, because he couldn’t go outside even if he wanted to, so it seemed like it would be easy enough to follow these instructions. But then, Bauve wept bitterly.

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Life update: Dealing with isolation, 10 months in

I was going to write a 2020 year in review post, but between the entry just feeling in bad taste and me being really sick during the last two weeks of the year and lacking the motivation to finish it, it never happened. Suffice to say, I survived 2020. I feel incredibly blessed and fortunate that I did not lose my job, I actually improved my living situation and managed to finally get my own place again, and I was able to continue connecting with friends and have a reasonable virtual approximation of my “normal” life.

It’s 2021 now though, and man, if I’m struggling, I don’t know how the rest of you are dealing with this. As I alluded to in some of my entries back in March and April, back when we still thought this would be over in a couple months, having autism makes me set up to do better than most in a situation where people can’t socialize in many ways. While I value the friends I have and community I have built, it simply takes way more effort for me than the average person to live a “normal” life. It both takes longer to do things like “get ready” to go out of the house, and it drains me more sometimes to interact with people. It’s nothing anybody in my current life is doing, and a lot of it is me still dealing with some negative past experiences that cause me to have social anxiety now. But suddenly Zoom removed those barriers. As long as I was wearing a semi-presentable shirt, I was good to go, and nonverbal cues that I struggled with were suddenly largely removed from communication because they’re just difficult to pull off on Zoom. I really tried to take advantage of the opportunity and go to as many meetings in the community that I was interested in that I could, both because I no longer had the barrier of transportation and because it suddenly felt like a wall had been torn down in my interactions with people. It really felt great to the point where there were times I overwhelmed myself because I simply committed to too many things. But overall, it felt great.

As people start to get vaccinated, though, there begins to feel a sense of hope that things will change soon, and we will be able to see each other again. But at the same time, the actual numbers of people that the virus is affecting is higher than ever, it’s more important than ever to stay home, and, by the way, it’s January, a traditionally bleak month for many people even in normal times. Back in January and February of last year, I started attempting to interact with people more, and had many conversations with one of my best friends where she tried to clarify any questions I had about certain interactions. Then, suddenly in March, none of that “progress” I had made mattered. I’ve attempted to blaze my own path since, but it is simply hard. I saw my two best friends in the world in person (both of whom live in different states) for exactly 8 hours (all in the same day in June) and 0 hours in 2020. I’m 32 now, finally have a stable job for the first time in my life, and I’d like to start building relationships and a path of my own. But I can’t really do that just sitting at a computer all day.

I also feel regretful now because, in 2015-2017 when I lived alone for the first time, I now realize and accept that I was not ready to do that, yet which is part of why it didn’t go well. I built up walls around myself and didn’t let anybody in the house, and a large part of that was due to my anxiety. Now I’m at a point where I would be happy to have people over, but I can’t. It is a tough irony to swallow. I am a person that needs his alone time, and that is set up to thrive in Zoom. But after 10 months of this, even I wouldn’t mind a week where I could safely go to a different party all 7 nights.

So how are the rest of you doing? I hope you all are holding up well. I’ve come to some level of acceptance of this situation, and I think 10 months in we all have had to adapt to survive. This entry feels like pure complaining, but I write it because I know from my autism group that even other people with autism are feeling the same way. It used to be you could solve any problem and at least make yourself feel better for the day by saying “just go outside and try to meet people to fix that”. But now you can’t do that. We’re all boxed into our preexisting lives, and if your preexisting pre-COVID life was terrible, that is another hurdle to climb as well. I also wrote this because I know for me it can be comforting to read experiences of other people going through the same thing I am, and I imagine this is especially true for people in this isolating time. I don’t really fault anybody for how they are handling themselves during this time. You don’t have to be productive and write 6 books during quarantine; just be a decent human being and do whatever it takes to make yourself stay mentally and physically healthy. Even the basics are something to be proud of right now, so good job to anyone who is doing their best to pull themselves out of the chaos.

 I promise that when this pandemic is over and we begin to be able to travel and go to concerts and do all the things we used to do again, I will embrace that opportunity with open arms, and I imagine a lot of other people with autism will as well. While I hope Zoom sticks around at least in some capacity because it increases the accessibility and availability of communication for people, after 10 months, it’s not the same. I promise to continue to stay home and keep others safe for as long as I need to do that. But, when it’s safe, I’ve got a life to live. We’ve all got lives to live. And I hope none of us take them for granted.

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Sometimes taking the plunge is the best decision

At the beginning of July 2018, I had had enough.

I knew that living in Maryland with my brother, as I had for the previous year, just wasn’t working. After having an apartment of my own for two years in North Carolina, I lost my job and ended up in a situation where I needed to move immediately. My brother had offered a few months earlier to take me in with the promise that he would help me learn certain life skills I needed to be more independent. With truly nothing to lose at the time, I decided to take him up on the offer.

It was a hard year. It ultimately strained my brother’s and my relationship, as he was too annoyed by some of my shortcomings to really be helpful, and I was terrified of his frequent fits of anger and attacks on my self-esteem. Despite my perception of increased job opportunities living close to Washington DC, one reason I had taken my brother up on the offer, over 200 job applications had led to just 2 jobs, both of which were short-term. And socially, due largely to my low self-esteem, I was afraid to go out. Other than frequent visits with my college friend Sarah who lived in the area, I barely did anything socially.

Despite this, I had a job lined up and ready to start at the beginning of July. And then it just didn’t happen. One anguished Monday morning “when is this going to start?” phone call to a recruiter on my part turned into the job not starting. And from there, I had a decision.

I could keep on with the job hunt, as I had done all that year. My brother, to his credit, seemed willing to let me live with him indefinitely. But now, with this impending job no longer looming over my head, I truly had no strings attaching me to Maryland. I did have a church family I had just joined and was getting comfortable with, but I had no upcoming commitments. What’s more, my sister had been offering me the chance all year along to come live with her in Chattanooga. And if I ever wanted to make the plunge, this was the time.

I carefully considered the move for most of the day, as I finished the phone call at 10 am and my brother wasn’t even due home from work until 5 or 6 pm. But a bit of careful consideration and a couple of phone calls later, it was time to go. I told my brother and thankfully my entire family helped me make the move happen fast, as I headed for Chattanooga just 5 days later, on Saturday. I did not even get a chance to say goodbye in-person to people I had met at my Maryland church. But it was just time to go.

Two and a half years later, I can honestly say this was the best life decision I have ever made. I got my own place a few months ago, which was the eventual goal, but I feel like I’m in a much more stable situation now than I ever was when I lived on my own in North Carolina. I have simply met the right people here. Tennessee has turned out to be a great state to live in to get resources for autism, between the Chattanooga Autism Center and the CHOICES program. I’ve found the right church and made friends there. And I even eventually found a job, although the job is remote so technically, I could work anywhere. I’d like to think that the lack of distraction I’ve had here enabled me to have a clear head to do well in the interviews to get it, however.

Sometimes making a sudden move and flipping your life script around immediately is the right thing to do. The discernment process is important. In my case, the discernment process only lasted a few hours, but during those few hours I talked to a couple of people in my life who I trust most to see if they thought this would be the right decision for me. However, sometimes the discernment process cannot go on forever and the best thing to do really is to move on as quickly as possible. I’d given Maryland a 10-month try, and saw that it was likely to be difficult indefinitely. I also knew the costs of living in Maryland were much higher than they were in Tennessee, so it would be much longer before I reached my eventual goal of living independently. And so, I took the plunge.

The idea of feeling compelled to make sudden decisions came up at my church’s Bible study yesterday. I felt encouraged to share this story because, while not ultimately as life changing as that, it was quite jarring for me at the time. There are many people I know who just seem stuck in difficult life situations that they cannot get out of. Sometimes, the right decision is to try to stick things out and hope they get better. But that is not the only option. If you are lucky enough to have another option present itself, sometimes that is the right option to take.

I see this especially in people with autism because I know we like our routine. Everything about living in Chattanooga for the first few days was different, right down to getting used to a new house and the differences of where things were located. It was disarming. But after even a few months of starting to blaze a new path, things became easier and it became clearer I had probably made the right decision.

In the last couple years more than ever, I have seen the isolation of COVID push people to make sudden, wholesale changes to their lives. It does feel easier to make these changes when you know you have nothing to lose. But I cannot stress enough: In life, it is always important to consider all your options and never feel too trapped in one situation. After having taken a big plunge once, this is something I will always personally keep in mind going forward.

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The importance of conversations and working together

(Disclaimer: This latest entry is not about autism at all, but in light of what’s happening in our country, I feel compelled to talk about a life experience I had 4 years ago and relate it to what’s going on now. Regularly scheduled autism entries will resume soon!)

Back in ancient times when traveling to see concerts was commonplace, I hopped a Megabus on January 20, 2017. The bus was headed from Durham, North Carolina to Richmond, Virginia and then on to Washington, DC. I was going to see my favorite band Umphrey’s McGee play a show in Richmond that night. The bus was running over an hour late and I remember being antsy as I ran to get on it. But then I remembered something different: the bus passengers were overwhelmingly (over 80%) women. Having been on many buses before, I knew this was unusual – most buses were over 70% men, and in general I would not advise women to travel alone on the bus. I put on my headphones and settled in for the short 2 1/2-hour trip. As the bus gradually worked its way northward, however, I soon realized that most of the women were on their way to Washington, DC to join in the women’s march scheduled to happen the next day after the inauguration of President Trump. As the trip wore on, instead of the usual every-person-for-themselves mentality I’m used to seeing in buses, the passengers on the bus looked out for each other, making sure they knew where we were going and when we would get there, and making sure everyone was on the bus before we took off to the next stop.

I honestly felt a bit ashamed of my destination at that time, but my trip, concert tickets, and accommodations were ultimately nonrefundable, so I departed in Richmond and enjoyed a very good show. However, I was struck by the uniqueness of this bus ride. These women likely didn’t have a lot of money, which is why they chose Megabus, a typical dirt-cheap method of getting up and down the East Coast that I had become quite familiar with because I also didn’t have a lot of money. However, they still wanted to be on what they felt was the right side of history, and exercise their 1st Amendment right to protest a difficult, painful election. Yet the atmosphere on that bus, and on that weekend when protests and women’s marches raged all over the country, was quite different. Most of these protests were nonviolent and peaceful despite the fact the people marching were quite angry and had everything to protest for. Additionally, the nation collectively knew that these protests would be peaceful and, at the end, for better or for worse, Donald Trump would be president, and there was nothing we could do about it except give him every chance to do a good job.

Flash forward to 2021. In November 2020, we collectively decided in our elections that we would rather have Joe Biden be president than have Donald Trump serve a second term. It was not close. There would have to be significant election regularities and corruption in at least 4 or 5 states to even give Donald Trump the slimmest chance of winning the election. And yet somehow, the narrative that the election was stolen has persisted for three months, and ultimately gave away to ugly chaos in the Capitol last Wednesday. What is different? First, I think back to the marches. That spirit of helping each other out that I saw on the bus seems nowhere to be found. While most people at the Capitol seemed to ultimately agree on one key thing, that being disagreeing about the results of the election, their way of sharing it was much different than in 2017.

Ultimately, suppression of political discussion is to blame for this change. While the election of Donald Trump was horrible and traumatic for many, as the last four years have stretched on, there has been an increasing moratorium on public political discussion. While there are certainly contexts where political discussion is not appropriate, this complete public cessation has been harmful. People who want to find politics will find a way to discuss politics; if they can’t do it in public with their friends, they will find a way to do it online, and there gain exposure to extremist opinions that are ultimately further from the truth. If you gain access to a steady stream of these opinions for four years, and you are not able to think critically about them and discuss them with people in your life, that is when you end up doing things like trying to break into the Capitol building. The coronavirus pandemic has also not helped matters. Lots of people (and you could argue, the more responsible people in our society) are staying home as much as possible right now to avoid getting sick and spreading the virus. That means, for people that are still spending time in public, it is easier for misinformation to spread.

So, while we may ultimately feel powerless right now, little conversations about politics do matter, and it is not too late to have them. If you see your friend from high school spouting misinformation on social media, try to tell them the truth in a civilized way. I have had people I know personally ask me questions about the election and Joe Biden that show they have a different understanding of the truth than I do, and I have done my best to have healthy discussions with them. (Honestly, the country will not descend into a Communist dystopia the second Joe Biden is inaugurated. Nothing even close to that is true. If we could all just calm down about that and give Joe Biden the same chance to do a good job that even the protesters gave Donald Trump in 2017, that would be a great start.) Words are important and powerful, and as hard as it may seem to believe right now, words may be the only thing that can get us out of this mess. One thing all American Republicans, Democrats and independents can agree on is that America is really struggling right now with the fallout of the coronavirus pandemic and resulting economic crisis. The only way we can truly work our way out of this is to work together even through our collective anger, in the same spirit as the women on the Megabus I rode four years ago.

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Learning to be self-confident in your daily life

On Saturday night, my autism group did a Zoom movie night watching the PBS documentary Autism in Love. This entry is not a movie review (although as a whole, it did a particularly good job chronicling four separate people with autism and their experiences in relationships), but I wanted to focus on one specific aspect. Lenny is easily the person of the four profiled who struggles the most. It is mentioned early in the movie that he did have a successful relationship (before the time of the documentary) that ended abruptly due to his lack of understanding of how to be in a committed relationship. He spends most of the movie alone and struggling to come to grips with who he is as a person. Lenny, to me, is defined by his overwhelming desire to “be normal”. While it is good for people with autism to learn how to tone down their symptoms sometimes in certain social situations, Lenny takes things a bridge too far.

Two scenes in the movie particularly stuck out to me. The first scene occurred when Lenny was asked in an interview what his interests were and all he could say was “sports”. When pressed, the interviewer mentioned that he was interested in conventions and had attended ComicCon the previous year, Lenny dismissed it saying, “A girl wouldn’t be interested in that stuff”. Lenny was also asked in another part of the interview about his desire to get a job. He noted that he felt a strong pressure to get a job because “you need a job to have a relationship. Women hate broke men”. Lenny, who never graduated from college also added, “I can’t hang out with people who have graduated from college because they’re higher than me”. Lenny genuinely believed that just because other people had graduated college, that automatically made them a “better person” than he was because of that one trait.

There’s a lot to unpack from the above paragraph, but I find it easiest to do all at once, because it all relates to the same thing. I used to be a lot like Lenny, and I sympathized greatly with him when I saw him struggling with these issues. In college, I struggled to relate to people, and it felt like no one wanted to be my friend, even though the reality was that I was just having a hard time initiating the necessary interactions with people that would cause them to want to be my friend in the first place. Lenny has responded to this struggle to relate to people by assuming that he needs to be “normal”, above all else, for people to like him. However, his desire to be “normal” is crowding out other aspects of his personality. He doesn’t want to tell people about ComicCon because he assumes they won’t be interested, when in reality, there are many girls that are interested in attending conventions, and he would likely have better luck searching for relationships if he eyed girls with this common interest. He also is seemingly hung up with the idea that the male must be the primary breadwinner in the family, when there are plenty of modern relationships that this is not the case. Finally, he seems to be hung up too much on comparing himself to others. While it is generally true that college-educated people are more likely to be friends with other college-educated people due to a similarity of common experiences, it is not because some people are “better” than others but simply because life happens anyway. When making friends, Lenny would do better to focus simply on common interests rather than thinking, “oh, this person’s too good for me”.

It is easy enough for me to give this advice because, for a long time in my life, I was Lenny. I used to walk around completely anxious and unconfident every day. I knew I wasn’t “normal”, I knew I couldn’t fix it, and I knew that this would cause me to struggle to relate to others. I was very self-conscious about all my autistic stimming because I felt it was costing me friends and I had seen people judge me for it. I also had some negative college experiences that made it clear that it was harder for me to relate to people than others, and because of that I thought other people didn’t want to be my friend, which is a terrible, daunting thing to go around in life assuming about everyone you meet. However, at some point shortly after I moved to Chattanooga, I just stopped making these assumptions. I’m not exactly sure what caused the transformation, but I realized I would do better in life if I just stopped caring. Sure, it may be harder for me to relate to people, but it’s going to be even harder if I go through my life with my arms slouched and head down. I need to own who I am, and not just the weird stimming and occasional lack of social grace but also my gift with music and my weird obsessions with music and game shows and alphabetizing things. I need to not be afraid to show who I am to other people.

As a result of that, I feel I’ve made more friends in the last two years than ever before. I do think part of this is because people in their 30’s are less judgmental than people in their early 20’s, especially their early 20’s, so for people with autism who are in that tough age group, trust me: it does get better. But I think things have mostly gotten easier for me due to my increased confidence. I know that who I am, naturally, as a person, is good enough for some people, and because of that, I feel no compulsion to mask it most of the time. This frees up the space in my brain that would ordinarily be spent obsessing over every little thing I say to just be, and have fun, talk, and interact with people, volunteer to do things I’m good at, occasionally stretch myself, and also not be afraid to speak up and say why I would rather not do something. It is as if a weight has truly been lifted off my shoulders the last couple years. I feel more “normal” than ever even though I have not really changed any of my activities and special interests. I have just embraced who I am, and decided that is good enough. It’s been a lot of work, but that is truly the first step to getting to know others, and it is the most important step of all.

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High school part 2: Social life

I have already described my high school academic experience (see Tuesday’s entry), and today I want to talk about the social experience. In hindsight, my high school experience was incredibly different from the typical high schooler’s experience, but I was happy and did not realize or care at the time.

It’s not that I didn’t have friends, because I definitely did have a set group of people that I ate lunch with. It’s just that I didn’t do things outside of class with them. Our friendships revolved around being in Advanced Placement and honors classes together, and the necessary overload of work that came with that. My best friends that I talked to online on a regular basis included Vlad, Carolin, Kelly, and my best friend Pete. Pete seemed to understand and not let my autism faze him in a way few people did, and we had similar academic strengths, so we were able to bond over writing and our budding interest in politics. Even though he was starting to lean way more conservatively than I was, back in the halcyon days of 2004, we could actually have reasonable discussions about this that could help both of us learn things. Pete was absent from school sometimes because he had to attend conventions for JSA (the Junior State of America) and I would frequently sum up what happened that day for him in an e-mailed daily report.

The key for me was that as much as Pete and I talked during school and online every night on AOL Instant Messenger, we rarely if ever did anything outside of school, and the same was true of my other friends. I was aware enough to know other people were doing things (and especially knew that a lot of drinking was happening on the weekends, naturally) but at that point in my life I chose not to participate. I was never invited, either. I imagine if I had been invited, I would have probably found a way to go, but my not driving at the time would have probably put a damper on some of those activities. However, very unlike my life in college later on (as you will see), I did not want to be invited all the time. I needed lots of down time after school, and there were many nights when homework would take me upwards of 3 hours to complete. I also was involved in journalism and the honors society, periodically going to meetings and layout nights for the school newspaper, and in my junior and senior years I was working a few hours a week as well. I spent the rest of my time listening to music and spending time in online communities. I had just discovered progressive rock music, and I was that weirdo who spent his time discovering and listening to lots of 20-minute songs by Dream Theater, Neal Morse, Porcupine Tree, and Opeth over the course of my final two years of high school. I didn’t even go to school events – much. I skipped our sophomore ring dance, and for junior prom I elected only to go to the post-prom and not the prom. I decided not to go to the prom because I did ask one of my friends out and got turned down, people were generally arriving in limos and taking pictures beforehand, and I just didn’t feel like there was a way for me to get involved in all that pomp and circumstance. We also had a senior dance that was much more straightforward than the prom, and for that one I did decide to go by myself, and had a great time. I had to gradually become more comfortable with going to these things as my school journey progressed.

During the summer, I did go to a couple of camps, including two weeklong church camps where I spent more of my time hanging out with the adults than the other kids in camp, but I did manage to help fix some houses that needed work in our community. These camps were really the only sleepovers I had ever been on, though. Related to this, there is one other high school event that stands out that I want to talk about. In my senior year of high school, I was part of a Relay for Life team that included several of my high school friends. The Relay for Life is a 24-hour team walking/running event designed to raise money to fight cancer. I went with the goal of staying the entire 24 hours, something completely new for me. It also required me to spend time with some of these friends overnight for the first time. I was unable to get any sleep outdoors in a public event with music blasting, while most of my friends slept easily for at least a few hours, and this frustrated me. I also noticed that some people of opposite genders cuddled up together that I never knew were even in a relationship, and this surprised me. Getting close to girls was not something I was ready to explore in high school, but I do remember feeling puzzled and left out on that particular night.

I am talking about all these social experiences in so much detail to set up my difficult college experience, which is coming up in a couple chapters. As you will see, academically, high school in particular was a great success for me, and I am very thankful to the staff at Jonathan Law High School in Milford, CT for really embracing me and knowing how to work with me. However, socially, while I had friends, I definitely kept my distance.

Just because your child with autism isn’t socializing a lot in high school doesn’t mean they aren’t happy. While I certainly had my moments of unhappiness, I was quite content with my own company even back then. I still wish in hindsight that I had gotten out and explored a little more then so I would have been better prepared for the next part of my life, but the reality was that I was happy and I had no reason to make any changes.

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High school part 1: Academics

This is the first part of a two-part series I wrote about my high school years. During this part I focused on academics and during the second part I focused on my social life. I will post the second part on Thursday. Happy reading!


I graduated high school fourteen years ago in 2006, and the more distance I gain from it and the more I recognize what the experiences of others are like, the more I realize how blessed I was to have the experience I did.

The biggest compliments I can give Jonathan Law High School, a public school in Milford, CT where I grew up, can be summed up in just a couple phrases: The school didn’t hesitate to recognize my polarized abilities in certain areas, and they gave me everything I needed to be the most successful student I could be. One thing even some people that know me well may not know about me is that I actually had one resource planning period a day in high school, where I was put in a room with just a few other students and my wonderful teacher Mrs. Babina to work on things like organization, fine-tuning my motor skills, and even having occupational and physical therapy sessions once a week. I may not strike you as the typical resource student; I didn’t then either. I spent most of the rest of my day going to honors and Advanced Placement (AP) classes, and was able to start college off ahead of the game with 12 general education credits thanks to some of the courses I took in high school. Yet, despite the fact that I was able to succeed in AP classes, the school recognized that my autism still meant I had needs in other areas, and it was willing and able to serve those other needs. The school recognized that my ability to stand up for myself and ask for things I needed from teachers and my peers might be weaker than normal. Thus, if I ever had a problem with a teacher or a class (and occasionally I did), I would go to Mrs. Babina first, and we would figure out what I needed to do and what questions needed to be asked.

Students with autism, especially those on extreme ends of the spectrum like me, can sometimes be tricky for schools to figure out how to deal with. I would say there are two main reasons for this. The first is that the student is likely not affected in the same way other students that receive accommodations are. The student could be extremely intelligent and have no problem at all understanding the material, but just have a problem with the way the material is being presented or tested on. Even something seemingly insignificant, like having noises or distractions around that wouldn’t be distracting to most people, can greatly impair a student who has autism’s ability to complete the assignment. The second is that an autistic person can be extremely gifted in one area and extremely deficient in another. These deficiencies and gifts can even be in different areas for different students.

For example, I am gifted at writing and memorization but struggle extremely with spatial relations, to the point where geometry was an extreme challenge for me (or it should have been – but I’ll get to that later). My friend, Gavin, however, who currently works as a computer programmer who majored in physics and computer science at college is the complete other end of the spectrum – he has difficulty writing but is brilliant in math and science. My verbal IQ is 80 points higher than my performance IQ, a staggering amount but one not atypical of autistic adults. Thus, just because a student is doing greatly in one area does not necessarily mean they won’t need extreme amounts of help in another area, and vice versa.

The most helpful modifications I received in school were extended time on tests and being able to use a computer to take notes and to take essay tests. Extended time was helpful because I am prone to melting down if put under an extreme time limit doing a long test. I even, as sadistic as this sounds, received extended time on the AP tests and SAT – I had up to 6 hours to complete those tests. I didn’t use it all, but knowing it was there made it much easier for me to focus. Using a computer or a self-contained wireless keyboard (such as an AlphaSmart) to take notes and take tests was important because my handwriting, as with many students with autism, is incredibly sloppy, haphazard, and unreadable. At times when I’ve been writing fast, I have difficulty reading it myself, so I can certainly understand why teachers would. Having that modification allowed me to focus more in class also, because it took me less time to take notes. Another modification I’ll mention was that I was always graded on effort in PE, and I took it period 7, the last period of the day, every time I took it so I didn’t have to change before it, because that would be a stressful situation for me. Students who have autism generally don’t like PE, but if the students are willing to put effort in, PE teachers are generally willing to work with them.

Working with the resource teacher even helped land me my first job. Mrs. Babina’s paraprofessional knew a lawyer that was looking for someone to help him with typing documents to save into his computer on an extreme part-time basis. Since my 90 wpm typing speed was infamous throughout the school, I was given the opportunity to take a trip during the school day to get to know the lawyer, Ken, and see if we would make a good match. I instantly felt comfortable in his office, and he gave me the job. Ken was the most gracious first boss I could ask for, as my first high school job was quite a bit different from your average gig at McDonald’s or the local ice cream shop. I would work 2-3 afternoons a week for 3 hours, typing and occasionally helping to write letters. One long-term project I had was typing a 50-page lease into the computer – you couldn’t just scan a physical document into a PDF with your smartphone back then. While I did this, I got to know Ken and learned a bit about the law in a comfortable environment. He even allowed me a 15-minute break halfway through each short shift, where I would either talk with the office staff or walk around the neighborhood.

All of this sounds idyllic, and a lot of it was. However, I still definitely had bad teachers and bad classes, just like the average high school student does. I had an AP European History teacher that would spend the entire class period reading verbatim out of the textbook, essentially leaving his students the responsibility of teaching 500 years of European history to themselves. I had an English teacher that had an absurdly strict grading system where it was possible to get negative scores on homework assignments and tests, and whose way of distributing information about grades was by having the entire class pass a sheet of paper around the room, where everyone knew who was who. I had a class called “online communications” that essentially devolved into a study hall which I got credit for after the main project we were going to complete as a class ended up not panning out. All of these stories are typical. I had great teachers too. Mr. Kulenych, my journalism teacher in junior and senior years, especially stands out for encouraging my love of writing and editing and my desire to do those things in college and in my adult life. Dr. Barbiero, my AP US history teacher, Mrs. Bouchard, my biology teacher, and Mrs. Babina herself all also stand out.

I will close this discussion of my academic high school career with one particularly amusing story that highlights some of the unorthodox methods students with autism choose to learn. You would think, with my verbal and performance IQs, that my highest grade in a high school class would be in an history or English class. And you’d be wrong – it actually was in geometry. Here’s how. Even though I struggled greatly with the concepts due to my difficulty with spatial relations, the teachers gave practice tests for homework 2 nights before the test that were “exactly the same as the real test, but with different numbers”. Then we would go over the entire practice test, problem by problem, in class the day before the test. Keeping that in mind, I would then take the practice test home, and simply memorize what everything looked like, and how the numbers were related to each other, for the concepts I was struggling with. Then I would come in the next day and get 100 on the test not because I really understood what I was doing, but because of the memorization. Of course, when I later had to study geometry for the GRE exam to get into graduate school, it was difficult learning those concepts again, and that class would have been much more difficult without identical practice tests. However, the story is a good example of how sometimes high school challenged me and forced me to find ways to compensate for my weaknesses with my strengths.

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