Perfect: a poem

I’ve been doing so much writing lately for work I haven’t had a ton of time to write anything else, but I did write this poem the other day, so I thought I’d share it. It’s pretty bleak, but it helped me get out some feelings I was having at the time. Also, without spoiling the entire meaning, I will say that it is very on topic for an autism blog. Hope you enjoy this – and rest assured, I am doing much better today than I was Monday when I wrote this.

Perfect

On day 274 of my ascent
Up the steep cliff I could previously never see at all
I stop to rest for a fleeting moment
And suddenly
Unceremoniously
I lose my perch
For who could account for
The jagged pile of rocks someone had placed there
To assail me near the top
“It is not enough to climb,” he said
“You must dedicate yourself for longer than you thought possible”
And at any moment
You could find yourself
At the foot yet again

For no one had told me
The curve at the top would be this steep
And no one would deign to wish that I reach it
But myself
And no one was there to hear the sound
Of the avalanche as it hit the snow
And if no one heard it
Did it ever happen?
Or was I a figment of someone’s imagination
A fleeting vision of something or someone that could have been
If I had been just a bit more-
Just a bit more-
Perfect-
Too late.
Yet still I climb.

On day 275 of my ascent
The bottom terrain seems strangely easy
As I scale up what I have scaled so many times before.
But I have no other mountain to roam in.
No hill to call my own
And I will keep climbing
Until someone or something
Or someplace or some divine being tells me
That I can stop.
Because, I am just a bit more-
Perfect.
Then the trumpet will sound
The flute and harp will ring out their choruses of praise
But if no one heard it
Did it ever happen?
Then silently
Another cliff will appear as if shot out of thin air
And at any moment
You could find yourself
At the foot yet again.

Leave a comment

Filed under Uncategorized

Tips for how to live alone successfully

If I had to tell people one thing about living alone, I would tell them, “You have to really enjoy your own company.”

Thankfully, this is not a problem for me. Since an early age, and especially since high school or so, I’ve been able to get lost in a book or movie or listening to a concert online for hours. But as I have spent increased time working with the autism support group, I’ve noticed that a lot of the people in my group do live alone, just like me. I’ve written other entries about finding relationships, but the simple reality of autism is that since we find it more difficult to interact socially and make friends, we are less likely to be able to engage in a successful romantic relationship, and due to the ways the American model of living works, that means we are more likely to live alone.

I’ve lived alone for two separate periods of time in my life: October 2015-September 2017 (two one-year leases) and August 2020-present. My first attempt wasn’t successful because I didn’t have all the supports I needed. While the 2 years ultimately ended because I lost my job due to no fault of my own, I can admit things weren’t going well before then.

The three years since August 2020 have been a bit different. For one thing, my niece is now paid to come here twice a week and do whatever I need, whether that is cleaning or taking me on errands or even talking to me about life situations and figuring out a plan for how to deal with them. I am very grateful to my niece for that. Because of that alone, the day-to-day stress of living alone is much lower.

However, I wanted to also talk about the social aspects of living alone. For me, in addition to living alone, I also work from home at a job that never meets in person. While I love my job, this makes it very important for me to do things to add variety to my day and use my social muscles so that they don’t dry up. Some of the things I am going to talk about below may seem like common sense, but I really feel the impact when I don’t do them.

1: Try to get outside for a few minutes a day, whenever possible. Thankfully, I live in Tennessee, a state that is warm enough to go outside for at least a couple hours most days year-round. Sometimes I go for a walk around the neighborhood. Sometimes I simply sit on my porch with my deck chair. And of course, some days I have social plans and go to wherever those may be happening. It’s important, however, to do something almost every day. I find I can sometimes start to get inside my own head a bit if I let even one day go by without having left the apartment. For people who live in colder climates, I would still suggest going outside, for as long as you feel safe and comfortable, or driving somewhere if you must. Doing something to change up your scenery a bit each day is quite important.

2: Set clear boundaries and schedules: For me, I wake up with some sort of mental plan for almost every day. Even if it is the rare day where I don’t have any volunteer meetings and have some free time, I will plan what music I’m going to listen to or what books I’m going to read and when. I don’t write down a minute-for-minute schedule anymore, but I try and make sure my brain is engaged and always knows what it is doing next. An example of clear boundaries also is doing certain things in different spaces. I never do any work for my job in my bedroom. I try to never sit at the computer screen for more than 2 ½ hours at a time without a small break, even during the course of a busy workday.

3: Embrace every opportunity to reach out to friends: Moving in mid-2020 and suddenly living alone was a bit weird. For the first year of my living in this apartment, people were generally discouraged from interacting with anyone outside their immediate household. For me, my household was only me, and while I was thankful to be able to check in with family from time to time as well as some friends that lived a mile from my new place that suddenly entered my COVID bubble, I did get a lot of time to reflect. Yet, in many ways, living alone during a time where people can get out is almost harder. During 2020, I felt blessed that I was able to shut myself down because socialization wasn’t an option, keep my job, and otherwise dig into some projects that I had been working on. But even then, I constantly stayed connected online with friends, and I try to do the same now. Because of the Internet, I was able to lay the groundwork for some friendships in 2020 that became in-person friendships when it was safe to be together again. Because of the Internet in 2022 and 2023, I’m able to stay connected and grounded. Rather than get inside my own head about an issue, I’ve learned how to talk about it to people in a short, effective way that can make me feel better and sometimes even build a stronger connection with friends.

Living alone in 2022 is harder than in 2020 because I feel like if I don’t really make an effort to stay connected, I can fall out of the loop quickly, and as most humans do, I need a certain amount of socialization to feel fulfilled, and I don’t like to miss out on events and parties. I’ve had other people from the autism support group share similar feelings with me. A friend has come to me, for example, wondering if he’s in jeopardy of losing a friend because they haven’t responded yet to the message he sent 12 hours ago. My response to that is that it’s hard, but if you live alone, most people have busier lives than you. People come home to roommates and boyfriends and spouses and sometimes even whole families, they frequently have to compromise with these people to maintain happiness, and they simply don’t have as much time. But they will get back to you; you just have to give them time. The really nice thing about living alone is that we don’t have to compromise, and as long as we keep up with general cleanliness, we end up having a lot more free time. That’s an awesome upside, as long as we work hard enough to maintain our social lives. I have some close friends that have even expressed jealousy at my arrangement and being able to do whatever I want all the time. It can be a real blessing. I just need to remember to set clear boundaries, get outside, and interact with friends to be completely fulfilled.

2 Comments

Filed under Uncategorized

Unmasking autism: Reflections on why my 30’s have been easier than my 20’s

I’ve been reading a fascinating book called Unmasking Autism by Devon Price which is probably my 2nd favorite autism-related book of all time, and I’ve read a few. (I would still say Everyday Aspergers by Samantha Craft is my #1 favorite, but in terms of how useful and helpful it would be for non-autistic people to read, this book probably even exceeds that one.) The primary subject of the book is people with autism who mask. The author talks about his own experiences with autism and how people with autism learn from an early age that their behavior may not always be acceptable in public, so they find ways to cover it up. Ways to make sure that other people are pleased all times and no drama is started. Ways to get by without causing a disturbance. But unfortunately, sometimes, ways to cover up their own personality and special gifts.

I’ve told friends that I am reading this book more slowly than I usually read books because it’s like looking into a mirror and seeing why I am motivated to do things the way I do. Last week in particular, I came home from a night out regretting one thing I had done, and then opened the book and the section of the book I happened to be on discussed exactly why I did it. That can be pretty unnerving, but it’s important. However, I also read about a couple of studies that really blew me away. To excerpt the book:

“One study, conducted by Bastiaansen and colleagues (2011), observed that though young autistic people experienced far less activity than allistics in the inferior frontal gyrus (an area of the frontal lobe involved in interpreting facial expressions), by age thirty no differences between non-Autistics and Autistic people were evident. In other words, Autistic brains eventually “caught up” to neurotypical brains, in terms of how actively they processed and interpreted facial expressions as social data.”

This is huge! I’ve always heard that autistic brains took longer to mature than neurotypical brains, which meant that they stopped maturing later, but now this (and a few other studies that the book mentions) are being done that verify that exact thing. Assuming all these things are true, suddenly a few things from my own life came into focus.

2022 is probably the most social year I had in my life, and 2023 is shaping up to be even more so. As I try and take advantage of all the opportunities I have now that the pandemic is over and I am well established in Chattanooga, I have noticed that I often still question my own judgment. When I was in college, I went through a number of difficult experiences that caused me to lose friends, have to move out of my freshman dorm in the middle of the year, and other difficult events. After I graduated, I simply didn’t have a lot of opportunities to socialize with adults my own age for a few years, for a variety of reasons, including social anxiety. However, every time I did it came down to the same questions. “Now remember, even if you think it’s going well, it might not be.” “Remember, you can’t take subtle hints at all, so to be sure to overanalyze everyone’s reactions to everything just right until you’re absolutely sure they dislike you.” It could be quite difficult. However, I’ve found as time has gone by, my judgment has been correct more and more. And now I have a literal biological explanation for that. My brain simply wasn’t fully developed yet at age eighteen, simple as that. But it “caught up”, or at least it “caught up” enough to where I could function in society without serious problems, so no wonder things are going better for me now. Mind blown, as you might imagine.

Obviously, my autism hasn’t gone completely away, nor will it ever. But in hindsight, it might have been encouraging to 18-year-old me that all I had to do was be patient. My 30’s have been the finest time of my life, and I’m getting to make up for a lot of time I lost in my 20’s. It’s been great. 18-year-old me who thought these problems he had would linger on forever could have used that.

The implications are wider reaching for society as well. Too often, autism can be treated like a terminal illness or death sentence by parents when their child is diagnosed with it. It’s definitely a difficult road. But if we keep doing these studies, and determine that it’s a delay, and a slower road, but still a road that reaches the destination, and if people keep working at things eventually they’ll get where they want to go, that’s what’s really important. I definitely know I function better when I have something to hope for. While obviously knowing “oh, you’ll be socially mature enough to handle this  in a few years” still wouldn’t have solved a lot of my college problems, it would have at least calmed me down into the mindset of taking my life one year at a time rather than assuming things would be difficult forever. I hope the same can be true for other people with autism as we continue to do these studies and learn more about the way our brains work. And the more hopeful and knowledgeable we are about the future, the more successful we can be.

Leave a comment

Filed under Uncategorized

Life update: A 2022 year in review

In November, a friend and I were discussing a question: “If you could relive one year of your life, which one would it be and why?” (We discussed this question from both the context of “which year would you redo because it wasn’t great and you want to fix it” and “which year would you want to redo because it was so awesome and you want to repeat it again”?)

Without hesitation, I said that 2022 was the year I wanted to repeat.

That does not mean this year did not have many downs to go along with the ups. While November, when I said that, was probably my best month of this year, December definitely had some tests in store for me right after that. But it does mean that this year is the year I’ve felt most like myself. It was the year I felt most accepted and loved. And I feel truly grateful for all of that.

In order to reach this point, two things had to happen early in the year. The first thing was getting through the Omicron portion of the pandemic and gradually resuming something approaching “normal life.” January definitely had me wondering if things would ever end, but being patient was key. The second was, oddly, selling my car. 2021 for me was all about driving, learning to drive, and getting a car. It was more social than 2020, but there was still plenty of downtime for me to focus on those things. But eventually I had to admit it wasn’t working for me where I was right now, and I was lucky enough to have the opportunity to sell my car and still make money on it. Once I sold it, a bit of a burden was lifted off my shoulders, but I also wondered where my life was going to go next and hoped I wasn’t giving up on something big. I’m happy to report life still went very good places.

The biggest messages for me coming out of this year are: I can do this, and people do like me and want me to succeed. 2023 is already looking to be a continuation of the gradual buildup that 2022 has been, and I am very excited about it. My political worldview, like many people, has grown increasingly cynical since 2020, and that has been difficult to deal with at times. But my personal attitude is that I strive to do what good I can, make other people’s lives better as best I can, and make my own life as enjoyable as it can be, even while the world is burning, and try to ignore the things I can’t change. And I’m grateful I’ve had the opportunity to put that into practice this year.

I am thankful for my family who have provided regular support, house cleanings, lunch, and phone calls that have enabled me to focus my time and energy on my work and the people I care about most. You are always there to catch me when I fall, and on my bleakest days when I am full of self-doubt.

I am thankful for friends who have supported me but also challenged me, who have helped me break out of my comfort zone time and again, who have asked me to do things with them when I have been too timid to ask them myself, and who have been there to listen as I processed all the transitions happening this year. I am also thankful for simply having the opportunity to meet people and do things with friends in public spaces again!

I am thankful to be part of a church community that is on fire with love and doing good for both the people in its own community and the local and world communities at large. I am also thankful for being able to sing in a choir for the first time since early 2020!

I am thankful for my insanely flexible job and supportive bosses which allows me to have flexible hours, have many opportunities I wouldn’t have with a more restrictive schedule, and do work I enjoy and am good at.

I am thankful for the opportunity to volunteer at the autism center, be a vocal part of the autism community, and the opportunity to individually reach people and touch their lives in the same way mine has been touched. The opportunity to take difficult experiences from my past and be able to help people going through the same things has been truly rewarding.

I am thankful for the Internet, which makes it easier than ever for me to meet people both online and in-person, and the new friends I’ve made this year just by being willing to try new events.

I am thankful for every friend and family member who has allowed me to ride in their car this year and driven me all the places I need to and want to go.

I am thankful for the great community and apartment I live in that gives me a pleasant place to spend most of my time. I also am thankful for the endless beauty of Chattanooga that can randomly surprise me on any given day. Some of you who have lived here all your life don’t know how good you have it!

And lastly, I am thankful for the chance to write and put my feelings on a page as I experience these things, and the opportunity to reach and help other people.

I truly have high hopes for 2023, but all I need to do is think about the bleakness of January 2022 to realize just how much can happen in a year. News headlines continue to blare, and the world can sometimes be a very dark place, so I hope light finds everyone that reads this in 2023, one way or another.

Leave a comment

Filed under Uncategorized

Tips for managing holiday stress

It’s something I seem to be hearing from just about everyone this year. “Why is December so depressing?” “I’m having a hard time getting in the Christmas spirit. What about you?”

It’s definitely been a different sort of December for me, too. On one hand, the weather here in Chattanooga for seemingly 10 out of the last 11 days has been nonstop clouds and rain, which has added a certain dreariness to the proceedings. But on another, my life just seems to be full of people going through really hard things. People losing loved ones, losing friends, losing jobs, getting really sick with COVID. Everyone seems to be struggling.

Even as someone who has been lucky enough to avoid major struggles, this month seems like a lot. As I grow older, every year I question a little bit more why we do things this way. Yes, Christmas is a really exciting religious holiday (for some) and secular holiday, something to be celebrated, and something that can be really fun and full of joy. But a lot of times it seems it just doesn’t quite turn out that way. Too many gifts to get. Too many Christmas parties to attend. And any time anything sad or bad happens in December, it somehow feels 10 times worse than at any other time of the year. (As a side note about Christmas parties, why is December literally the only time that groups get together to just hang out and socialize? We work-work-work for 11 months, and then December is forced socialization central. I would love a good casual get-together with people I work with in April. It’d be a lot more enjoyable than having to do five in December. It just adds to the dread of the month, I feel.)

For people with autism like me who are very reliant on routine, this month can be especially rattling. There’s all kinds of being busy at unusual times. There’s lots of socializing with people we don’t usually engage in social settings with, or worse, people or family members we strongly dislike engaging in social settings with. And for people with an intense fear of missing out (FOMO) like me, there is so much to do that inevitably we will miss out on something. Going to this party means missing out on that concert.

Worst of all, there is something I never realized until this year was a big factor: The days are getting shorter. Most other animals immediately start to sleep more and expend less energy the second winter comes. While sometimes we humans do this in January, December is literally the month with some of the shortest days in the year. Why do we work so aggressively against these trends by going to more parties and stimulating ourselves more, when we already have less energy to begin with? It’s a vicious cycle.

I was asked to write a blog entry about ways that people with autism work against holiday stress, and I have already spent almost 500 words venting without offering any solutions. However, I wanted to make a point of illustrating just how vexing and complicated this month can be.  But to me, this period of time, as great and happy as it can be, can at times feel so unnatural and illogical that to me there are only two pieces of advice I can offer. They are, however, very important.

-Take care of yourself: Whatever things you do to stay grounded and focused, they’re 10 times more important now. Read that devotion in the morning, just like you do the rest of the year. Go to the gym after work, just like you do the rest of the year. Pick one or two important things that keep you grounded in reality, and make those things very important. Even if an unusual event tries to encroach on that time, saying “no” to that event is sometimes saying “yes” to improved mental health. And most importantly, don’t be too hard on yourself. Most other people are just trying to get through this time. We all want to feel like we are accomplishing something and like we are understood and loved by others. Do whatever it takes to make you feel grounded. Also, try to do things you enjoy as much as possible. Sometimes, Christmas shopping this afternoon can wait until tomorrow afternoon if taking a nap is more important to you getting through the rest of the day. This brings me to my next point…

-Take care of others: As I’ve discovered this month, just about everyone else is going through this weird sense of disorientation just like you. And many people feel very lonely during this month. People with strained family relationships feel lonely. Single people feel lonely. People without jobs feel frustrated and lonely because unfortunately, almost no company hires for new jobs that start in December. What that all means: This is the month to not be shy about sending that text or Christmas card. Check in with each other. See how everybody is doing. Think of people in your life that you can make happier, and do it! This also has the pleasant side effect of making you happier as well  Now, don’t check in with each other in a confrontational way. Sometimes people need space and don’t have time to reply to you right away. But do it in a way that suggests openness. That is the true Christmas spirit, after all – having kind hearts and being generous to each other when we can. It’s not necessarily going to 9 stores tomorrow to find the perfect Christmas gift.

In closing, I hope everyone reading this has a great holiday season. But I actually mean that. Do what makes you you. Show kindness to others. Give yourself space to do whatever makes Christmas Christmas to you. And above all, remember that this stress is temporary and a lot of it will be forgotten once the month is over. A new year is just around the corner.

Leave a comment

Filed under Uncategorized

Biblical short story #2 (based on the miracle of turning water into wine)

Today’s short story is based on the miracle of Jesus turning water into wine that appears in the Gospel of John. The connection from this story to that miracle is a little looser than in my Good Samaritan story, but there is still certainly a different kind of miracle that takes place. Hope you enjoy it!

It was the day of her best friend’s wedding, and she wouldn’t miss it for the world.

Victoria had been best friends with the bride, Angelina, for more than twenty years. The two of them met in middle school and had a sort of “wherever I go, you will go” friendship for all of that time. And yet they had lived such different lives. It was hard for Victoria not to get jealous of Angelina. She always had good grades at the University of Connecticut, the college they both attended, and always seemed to know the next step in life, going through a series of business careers right after college and eventually starting her own marketing company. Victoria’s life was….often bumpier and less certain, and frequently she did not feel up to keeping up with Angelina’s circle of friends. But Angelina always made time for her, and the two of them would go to movies, shopping trips, retreat weekends at Angelina’s dad’s cabin – they were always inseparable.

Now that Justin, the groom, had finally come into Angelina’s life, Victoria knew that changes might be coming. Yet Justin was absolutely the right man for Angelina, she thought. Rugged, handsome, smart, and always so understanding and willing to be a compassionate listener to Angelina. If Angelina had any flaws, Victoria thought, chief among them was that she simply didn’t take enough time to be with herself – she was always moving on to the next endeavor in life, always solving her friends’ next crisis. And all too frequently, that friend having the crisis had been Victoria herself. From keeping Victoria’s dad from kicking her out of the house when she got into his vodka stash in high school, to making sure she got home safely, to visiting her in the hospital, Angelina had always been there for Victoria.

At the wedding, Victoria found herself suddenly disarmed to be seated at the head table as Angelina’s maid of honor, surrounded by a bunch of friends who all knew each other but that she did not know nearly as well. Still, they were having a Good Time™.

The ceremony had been beautiful, the first kiss heartfelt, the post-wedding pictures appropriately lovely on this surprisingly brisk May day in the countryside. But now it was time for the dancing, the eating, the drinking, the celebrating. And for Victoria, that was often the hardest part.

“Excuse me,” Victoria said during a quiet moment while the friends were waiting for dinner to be served. “I need to use the restroom.”

Upon reentering the room, Victoria noticed a man dressed in all black like the venue staff that she had not noticed at the ceremony. Something in her head told her that she needed to go up and talk to this man. So bravely, she did.

“Fancy seeing you here,” Victoria said, touching the man on the shoulder. “It’s a beautiful day, isn’t it?”

“It sure is,” he replied. “I’m in charge of getting the drinks ready. We’ll be going around to all the tables soon.”

“That’s great,” Victoria replied. “Could you do me a favor?”

The two of them continued talking for a couple minutes longer, long enough for Victoria’s wedding table to notice. When she got back to her seat, one of Angelina’s friends asked, “What was that about? Are you trying to have a wedding soon yourself?”

“No, no,” Victoria blushed and shrugged it off. “We were just talking about the menu. He wanted to make sure I will enjoy it.”

And indeed, soon enough, a flurry of activity began to start in the venue, and attendees began to be directed to pick up their dinner. The man in black came by the head table and asked for drink orders. After the rest of the wedding party had ordered various types of wine and mixed drinks, the man dressed in black came to Victoria and she said, “Uhh, I’ll have…..what she’s having,” pointing to Angelina’s friend Natalie sitting next to her, who had just ordered a glass of strong white wine.

“You got it,” the man in black winked at her, as the table erupted. “Wow, that’s terrific! Victoria is joining us today! This could truly be a memorable one.”

“No, no,” Victoria shrugged it off. “I just want to celebrate my friend. I’d like to be able to dance, you know.”

When the drinks finally arrived at the table, Victoria grew nervous for a second as she realized her drink looked identical to Natalie’s, but she didn’t say anything.

When the table offered a toast for the bride, Victoria raised her glass and put it to her lips.

It tasted….like the most magical water she had ever tasted. And suddenly in that moment, Victoria felt free. And safe. Jesus turned water into wine, didn’t he? Could this be the reverse? Water had never tasted so good.

While the other wedding attendants circled the building, the man in black who had talked to Victoria exclusively served the bride’s head table throughout the course of the dinner. Every time he came back, Victoria ordered the same thing….and every time she got more water.

After dinner and before dancing, it came time for toasts, and as the maid of honor, Victoria had to offer a speech celebrating Angelina. She had agonized for many weeks about what to say, and mostly stuck to the script, but towards the end added a couple heartfelt words: “Angelina is the most selfless person I know. I want to thank her for always being there for everyone she meets every day of her life, even on her own wedding day. I wish her and Justin nothing but the best.”

Angelina smiled and tears began to fall down as everyone raised their glass.

Leave a comment

Filed under Uncategorized

Biblical short story #1 (based on the parable of the Good Samaritan)

Recently, I’ve been writing a series of short stories that are meant to be modern-day versions and/or retellings of Biblical events. Since I haven’t posted much here lately, I thought I would post some of my favorites here this week (I’ve written 7 to date). As you might gather, this one is based on the Parable of the Good Samaritan. Of my stories, it is the one that most closely follows the original, so it is probably a good place to start. Hope you enjoy! I will get back to my usual autism-related blogging soon.

A man sprawled in the grass with large bloody gashes extending out of his legs. While the gashes had stopped bleeding a while ago, the man, clearly in pain, kept screaming for attention. But no one heard him.

For this was Addoloro Avenue, the most desolate road in all of North Carolina. Few people even knew of its existence, but those that did loved to use it as a back way to save time getting where they were going. The road was usually quiet, but when it did fill with activity, people were always in a hurry. They drove fast, because they knew no policemen patrolled the road. And there was rarely anything to look at.

But today there was. The man had gone out on a walk through his neighborhood, got lost, and fallen to the side of the road to avoid a car all too commonly barreling down it at 90 mph.

The first person to drive by him was a priest. This priest was on his way home from the hospital, where he had just visited 4 of his parishioners. One of them was likely to die of cancer soon. Another had taken a nasty fall today and lay in a coma. And two others were recovering from routine surgeries, but still needed his guidance. In one case, the priest knew that he was the only person not on the medical staff that Bartholomew got to talk to all day. The priest just wanted to get home and pass out. He took the back way because he heard there was a bit of a traffic jam on the main interstate, and he just wanted a nice easy drive. He saw what looked like a man squirming for help, but he thought, “I’ve already done my good deeds for the day. I need to get home.” And so he passed by.

The second person to drive by was a doctor on his way home from a 24-hour hospital shift. The latest variant of COVID-19 had been hitting the hospital hard and he had barely been time to think all day. 92 patients had been admitted, everyone needed fresh rounds of Paxlovid and breathing treatments, and the variant was even affecting his own staff, causing the cafeteria to have to close for lunch today due to lack of staffing. When the doctor drove by the bush where the man lay, he slowed down instinctively as though he knew something was wrong. But he was almost driving off the road himself, and he needed to be back at work in eight hours, so he drove onward.

The next pair of passengers was an unlikely duo: a pair of teenagers, Steve and Jim, that were taking a ride in Jim’s 2008 BMW. They were wanting to see how fast they could get it to go and were driving 100 mph along the backroads of North Carolina, enjoying the adrenaline. But, all at once, just as they turned onto Addoloro Avenue, it felt like their car was skidding out of control. Scared, Jim steered frantically and slammed on the brakes. The car appeared under control now, but perhaps they had pushed things just a bit too far. And then they saw him.

Without thinking, Steve and Jim pulled the car to the side of the road and got out. They knew their parents would not like them talking to a stranger, but it was clear this stranger was in need of help, and, besides, if they needed to get away, they had a very fast car sitting just a few hundred feet from them. When the man saw them stop, he said, almost with disgust, “Who sent you here?”

Jim replied, “I don’t know. We just stopped because we almost got in a crash and now it looks like you need some help. What do you need?”

The man replied, “I just need some stitches. Do you happen to have a cell phone on you?”

While they waited for the ambulance to arrive after calling 911, Steve and Jim got to know the man. They found out his name was Tom, and he had taught algebra at the school for 40 years. Nowadays, he walked just to get out of the house. They asked him for his number, vowed to keep in touch, and told Tom to regularly update them about how he was doing.

After Tom had left in the ambulance, Steve and Jim got back in their BMW. They drove the long way home, and drove exactly the speed limit, too. For they didn’t want to miss anything.

Leave a comment

Filed under Uncategorized

Letting go of “good girl” conditioning: Why learning to trust your friends socially is important

I read an extraordinary social media post about “good girl conditioning” this week on a friend’s social media timeline and noted that some of the things it talked about were so similar to my experience as an adult with autism I felt compelled to share. “Good girl conditioning” is essentially defined as the desire to not “rock the boat” or ever upset anyone, in order to be more well-liked.  For me, “good girl” (or boy) conditioning is, thankfully, not something I learned as a child. I lived in a good home with great parents who taught me self-discipline but also didn’t discourage me from asking questions or learning about the world around me as long as my behavior was generally good. If there were any problems with my upbringing, I think the only significant one was that I was a bit too sheltered. I spent a lot of my time alone in my room on my computer because my mom knew I was happy there, and all that time did not quite prepare me for my experience relating to others in the world that followed.

My freshman year of college was the hardest year of my life. Sure, it had high points. My entire hall of 20 people were all really close, and for the first several months of the year, I felt very included. There were many large and small group hangouts alike, and there was a sense of “we’re all in this together” that permeated the hall. Problems began when smaller groups and cliques started forming and I ended up not picking up on signals about which events might be better for me to sit out of than others. I had no sense of what appropriate boundaries with peers were. The thing is, no one ever expressed they were mad at me until it was too late. People started being irritated and perplexed by my behavior (which was also, naturally, autistic and a bit different from their own) as early as October, but no one ever talked to me about anything until January. When you are living in a space and sometimes spending entire days with people, that was entirely too late. For my part, I did not disclose my autism to these people because I wanted to be their friend and thought it would alienate me further. But, even though we ended up starting to try to work on these problems in January, ultimately things were irreconcilable and I had to move out of the hall in February, in the middle of the year, to a 2-person apartment that the university provided. It was isolating and I essentially had to start all over socially.

To this day, I have to fight the urge to guess what other people are thinking about me. My thought is to think that “yeah, it’s great nobody’s mad at me, but I’m missing something. Maybe I should overanalyze.” What I’ve found, however, in adulthood, is that the rare times I do go to a person and ask if they are mad at me, it rarely comes to pass. Adults tell each other they are mad at each other. They do not need to guess. 18-year-olds in a freshman residence hall are still learning how to be adults and might not quite have learned this skill yet, so I think it’s fair to give everyone a pass in my above situation. (Having to be around each other 24/7 as we did can also amplify many social situations.) But generally, I’ve found that I’m usually overreacting, and when someone legitimately does have something they want me to change, they will let me know about it.

As I’ve begun to work in the autism group, I’ve started having conversations with people who fall into the same overanalyzing trip that I fall into. For people with autism, we don’t fall into this trap necessarily because we are conditioned harshly not to upset anyone, but rather because we realize that we may not read nonverbal cues as well as others so we try to overcompensate by guessing, just because making friends can be such a difficult endeavor sometimes. The truth is, most of the time people are not thinking about you. Everyone has their own needs and issues, and only rarely can an awkward offhand comment made in passing or an awkward silence or a joke that went a little too far lead to complete disaster. I’ve begun to discover recently that I’ve led a very risk-averse life because I’m always trying to read other people’s minds, and it’s such a tiring game. Usually, your gut instinct is correct, and the older you get, the truer that becomes. If you want to become someone’s friend, there is no need to hold back or overanalyze or think of a list of reasons why that wouldn’t work out. Simply do whatever you think would work best, and if they really don’t think it will work out, they will tell you, and you can walk away and move on to the next thing.

The old cliché is true: Life is a contact sport. As someone who can find many social situations overstimulating, I think I’ve spent a lot of time in life holding myself back and potentially avoiding some social situations because it is just easier to live life with less stress. Of course, stress is something that I amplified for myself by doing things like trying to overanalyze people’s intentions or find some reason, however ridiculous, why they might dislike me. The danger of avoiding “contact” with people, however, is loneliness, and that can often be far harder to fix. Learning social norms and abiding by them is important, yes, but so is being able to be yourself and trust that others will tell you if you are slipping on the path toward annoying them. We human beings are all in this life together, after all.

Leave a comment

Filed under Uncategorized

Mental health and time management: On the importance of making sure you’re enjoying what you’re doing

To be honest, October has been a massive minefield of a month so far.

It’s been difficult for me because it just feels like there are so many things to be crammed into this month, and we need to do all of it. I was able to enjoy a very pleasant trip home to North Carolina in late September, where I got to visit my dad and celebrate his 79th birthday with it. But, due to Hurricane Ian, the trip ended two days early with me having to cancel my flight, take an 11-hour bus ride home two days earlier instead, and pray the two Umphrey’s McGee concerts I was planning to see would end up getting canceled so I would get my money back. (They did, but it’s still a bummer.) I am very fortunate not to have been in a place in Ian’s direct path, and also fortunate that home was the safest place to be. But ever since that 11-hour bus ride, it feels like I have been running headlong into thing after thing.

It wouldn’t be so difficult if I didn’t feel like everyone around me was also just as overwhelmed as I was. Constantly rescheduling the already-rescheduled thing on top of the rescheduled thing. I’ve even seen some rare moments of panic among typically composed people that have shaken me with worry. I was finally beginning to feel like things were starting to slow down and I was starting to regain control of my life again last weekend, until I had an embarrassing incident in church (that essentially boiled down to a wardrobe malfunction 2 minutes before the service started that I had no time to fix properly so I had to improvise – it was quite stressful.) The incident was no one’s fault, but it’s also reminded me exactly of how much I am doing. It reminded me that sometimes, I am closer to unraveling than I ever realize, which makes it all the more impressive that I do so much. I work, I hopefully do a lot of good in people’s lives with my work at the autism center, I go to church and sing, I talk to friends, I have lots of blessings. Even on the days when the things that are close to unraveling finally snap, it’s okay. I have family and friends that will support me, and lots of wonderful gifts in my life to move on to.

It’s hard not to mentally come back to this question after that: “What do I do in my life that makes ME happy?” Because, in a month where I am doing and doing and doing, sometimes it is easy to lose the purpose of all the doing. I think this is a question we all should ask ourselves. If I’m doing an activity that I should enjoy, and I am even doing it around people whose company I should enjoy, yet I am not enjoying it, what am I really doing? Mental awareness and space is so important in life. I know the years of 2020 and 2021 where often we couldn’t always do what we wanted to do were hard. But that doesn’t mean we need to exhaust ourselves to oblivion now.

As a person with autism, I recognize that I need more space than the average person in order to function in life. Even though I live alone, I would burn out really quickly if I went out every single night of the week to do activities with people. I turned down the chance to attend a Friday night bonfire I would ordinarily enjoy 90% of the time a couple weeks ago because I was just that burned out by that point in the week and knew I needed that time to myself. But, even if some people need more space than others, we all need some space. Finding that “no” button can be hard, but sometimes it’s not really a “no” button. Sometimes saying “no” to an activity or task is just saying “yes” to self-preservation.

We are are doing the best we can, and the best we can is honestly incredible work. There are days when everything feels incredibly close to unraveling. But we get out of bed, and we do the tasks set out for the day, and sometimes we never appreciate just how much it is until there’s too much of it. The fact is, blessings are sometimes only blessings if we let them be. I definitely have some events coming up before the month of October closes that I’m looking forward to. But I’m also trying to allow myself enough space to recover between each one, to actually enjoy the people I am around and in community with, to have time for that short conversation with a friend after an event or the hourlong break in the middle of a long day of work or the chance to go for a walk outside while it’s still not freezing out. Sometimes, the to-do list can wait another day.

Leave a comment

Filed under Uncategorized

My experience with the ECF Choices independent living support program

When I moved to Chattanooga in 2018 on nothing more than a wing and a prayer, I really had no idea that I was moving into exactly the right place at the right time.

I knew that the Chattanooga Autism Center existed, which was certainly a great start, though I didn’t have any time to really look into exactly what resources it would provide. But I also didn’t know that Tennessee, shockingly, is one of the best places for a person with disabilities to live.

In my case, this is due to something called the ECF CHOICES program. I didn’t get started in this program right away. The years of 2018 and 2019 were mostly about getting my foot in the door while living at my sister’s, finding a year-round sustainable job, and saving up to have enough money to live on my own. But once I did have enough money to live on my own, the ECF CHOICES program became invaluable.

As with many governmental programs, the application process was long. But I did actually feel like I was being responded to the whole time. There were no excessively long periods of waiting. I heard back to schedule my first interview less than two weeks after the initial application, and heard back about beginning the orientation process to join the program less than three weeks after that. Everything lined up perfectly for me to be fully enrolled in the program by October 2020, which was only a couple of short months after I moved into my own apartment.

So what exactly do I get out of the CHOICES program? For me, it’s been completely about independent living support. I was able to hire my niece, Amber, to go through training and come work with me 5-10 hours a week. Due to her work, I essentially don’t have to worry about keeping my house clean, which is a big stress relief for me and something I struggled greatly with when I lived by myself the first time. I stay on top of daily stuff and making sure things get thrown in the garbage when they need to and the dishes get done, but my niece is there to help with things like scrubbing the floors and bathrooms which would be a huge time sink for me. My niece also helps me with cooking meals and is just a great help to have when unexpected stressful things come up, like needing to go to an unexpected doctor’s appointment or DMV appointment.

As I have written about before, the ECF CHOICES program also helped me with driving. During one of my initial calls to CHOICES, my case worker, Juliet, really pressed me for ways I might want to grow more independent in the community, and eventually, I felt the word “driving” coming out of my mouth. Driving wasn’t even something I had thought about being a possibility since I was 16, but I knew if I wanted to take one attempt at it, this supportive environment was exactly where and how to do it. Driving ended up in my support plan, and a month later, I was calling the driving school, scheduling free lessons that would be paid for by CHOICES. It was quite a surprise and, even though my driving career is on hold for now, it is something that I am very happy I participated in. Recently, I got the opportunity to attend a presentation about the ECF CHOICES program at an autism conference, and I learned that it was the only program of its kind in the country right now, but that other states were working with Tennessee frequently to find out how to create a program like this. It isn’t perfect, and sometimes there’s a lot of bureaucratic red tape to cut through, including about 20 annual surveys that I have to complete on the phone. But this program is truly the only reason I can live independently and feel comfortable about it. I tried living by myself in North Carolina, and it ended up being a disastrous situation where I was lucky enough to get my security deposit back. But here, I feel confident. Being able to live independently as an adult is a big deal. I have to work 25-30 hours a week, I volunteer for the autism center 5-10 hours a week give or take, and I would get overwhelmed pretty easily by having to keep the house in shape. But this arrangement makes it easy for me to gain the confidence of being able to have my own space and have people over whenever I want without feeling like I am a burden on someone else. I would have never thought that Tennessee, which many consider to be a backwards state in some respects, would be the best state for me to have a situation like this, but here we are.

As I have grown older, one thing I have come to realize is that when you’re a kid, you think adults have it all figured out, but then you become an adult and you find out that we’re just winging it, too. I never realized when I was growing up how difficult it would be to find a perfect situation to live independently. There are so many people like me out there too. Let’s face it, me finding someone to marry or live with long-term outside of my family is a longer shot than most. So, for someone like me with these challenges, the only options previously would have been to live with family members well into adulthood, since living alone would lead to bad situations like my previous apartment in North Carolina. While sometimes this works out, I’ve heard many tales just from working in the autism group about situations where these extra-large families just lead to additional conflict. This is where the CHOICES program comes in. CHOICES looks holistically at each person in the program and says, “what does this person do well and what might this person need help with to live independently?” and then it works to help that person in whatever way they need. For me, it’s cleaning support. For another person, it might be support finding a job. Thankfully the program is so large that it is usually able to find the resources to help that person thrive. For many parents of people with disabilities, just getting through the first 18 years of school is often such a challenge that there is little time to think about adulthood until it is suddenly here, which can be a really stifling, scary occasion. The more resources we can get that genuinely help people like me become independent, the more happy families there will be.

1 Comment

Filed under Uncategorized