Autism and “masking” behaviors

I feel compelled today to write a bit about masking. Not protective face masks, no, not those. We’ve all heard quite enough about those. But the protective masking of their emotions and behaviors people with autism feel like they have to do every day to get by in life.

I have recently been reading a book entitled I Overcame My Autism And All I Got Was This Lousy Anxiety Disorder by Sarah Kurchak. In it, Sarah talks about her lifelong efforts to mask her emotions, feelings, and “stim”s. She got so “good” at this skill that people began to question whether she was actually autistic or not, but later in life, she struggled with confusion and finding out who she really was.

I acknowledge that the experiences of autistic women are much different than mine as an autistic male. Autistic women are conditioned in social graces at a very young age, and therefore sadly forced to mask more than their male counterparts, whose behaviors are often dismissed as “just boys being boys”. This also leads to them being underdiagnosed for autism because they are simply better at “hiding it.”  But as someone who has experienced what it feels like to go through life always and eternally masking, I wanted to offer my thoughts. I have reached a place where I no longer even make an effort to mask most of the time, and at times, I wonder how I got here.

I don’t really have much memory, thankfully, of my childhood and adolescent years through high school graduation being much more difficult than they are for the typical child. I learned that some of my behaviors, like the stimming, were really inappropriate when I did them excessively. But I never stopped them altogether; I simply learned to curb them to a place others deemed “reasonable”. College was the first place where I realized my behaviors were alienating people. In freshman year, I went through an unfortunate few months where I felt like I was successfully part of a social group for the first time in my life, and then felt completely ostracized from them just a few months later. I committed other social mistakes that were far worse than simply not masking that were the primary reason for me being “kicked out” of the group. But being kicked out of the group caused me to question everything. And I realized that, since I was a textbook case of all the typical autism behaviors, including not making eye contact and making loud, repetitive noises with my hands, if I ever truly wanted to feel the good feeling of being included in a group again but NOT get kicked out this time, I needed to start masking.

And so it began. I tried to sit up straighter in my chair and to make more contact with others. I kept constant watch of my hands to make sure I wasn’t waving them around or performing repetitive “stimming” motions. And while it worked sometimes and helped me make more friends, it also helped me realize that I have to expend a lot of mental energy to make eye contact, something that just comes naturally to most people. There were times I was not as mentally present as I could have been in conversations because I was making so much extra effort to control my physical actions. While it was largely working, I felt like I was going through life scared to be myself. For me, masking was an action that largely decreased my self-confidence, because it reminded me every time I did it that I had to hide part of my true identity in order to be “acceptable” to the larger public. And that’s something no one likes to think about.

I would relax my “masking” standards and be myself around family or close friends, simply for my own sanity and also because they knew who I was already and I knew I couldn’t hide it from them. Getting home from a stressful all-day public situation where I had to “mask” and being able to take my mask off caused the same sense of relief that taking my physical mask off after a long day out in public during the pandemic does.

I masked through pretty much the entirety of my 20’s, but I’m happy to report that things have started to change now that I’m in my 30’s. Things are perfect – I’ve still never attained a job in my life where an in-person interview was required. But I’m lucky enough to have attained a work-from-home job where I never have to have any face-to-face contact with anyone except via the rare Zoom meeting. Thus, I can be myself and focus on my work when I’m working, which is a welcome relief. I’ve found friends around me that like me for who I am and don’t mind if a little bit of repetitive tapping slips in from time to time. And through this lucky change of environment, I’ve found myself relaxing my own standards. It’s still unfortunately necessary sometimes to mask in short bursts, like at a job interview or a social event where I know I will be meeting new people. But it’s certainly not something I feel like I have to do all the time in public anymore. I felt very burned out through the majority of my 20’s, and I think a lot of the reason was because I felt obligated to mask in public situations, and it wore me out and made me think less of myself. There are times when everyone has to mask – to put forward their best selves in a situation for a short period of time, or simply because most people don’t act the same way around their parents that they do around their best friends. But it should not be a way of life and something we feel like we have to do all the time. For people feeling exhausted now because they feel like they’ve been hiding themselves their whole lives, it does get easier. And if you’re in a situation where it does feel like you have to hide your true identity every day, maybe that’s not the best fit for you. There are times and places to mask, but no one should ever feel like they have to hide their true selves all of the time.

Summer update (part 1): I have a driver’s license!

July turned out to be exactly as busy a month as advertised. As many of you have read, I finally received my driver’s license on Wednesday, August 4. I also attended the 5^th annual adult autism symposium in late July and saw a lot of great presentations there that I want to write about as well. Today I am going to focus on driving, and I will use a separate entry next week to talk about the autism conference. Both were jam-packed valuable experiences that have many details to discuss.

I resumed driving lessons in late June and ended up taking four lessons between the end of June and August 4. I ended up paying for them myself, because I thought that getting the training quickly before I forgot how to do things was important, as my spatial memory is quite poor. The first three lessons went well, though I have a few amusing stories to report. During one of the lessons, my instructor, Mr. Thompson, took me to his house because his wife needed help operating their new remote. This was fine, and I only sat in the car for two minutes or so, but the tricky part was getting out. Mr. Thompson’s driveway is at the top of a steep hill, a busy street is at the bottom of a same hill, and it was raining that day. Getting out of that driveway is one of the most typical maneuvers I have ever had to attempt at the helm of a vehicle, but I managed. We also have managed to drive on most of the hilly, steep roads in Chattanooga at this point. Some of you may recognize Hamill Road and Gadd Road. I am lucky that Chattanooga’s unique geographic layout provides a variety of roads to practice on, but it has not been easy maneuvering through narrow, twisty streets that require 90 or more degree turns just to stay completely on the roadway. I also gained experience dealing with rainy, wet roads during two of my lessons, which was valuable experience to have.

The final lesson, however, thankfully took place on a bright, sunny morning. I was still almost late because a construction vehicle completely blocked the roadway en route, but I made it just in time. The way I thought things were going to work was that Mr. Thompson and I would practice for an hour or so, and then if he thought I was ready, he would give me a driver’s test in similar fashion to the test that ended up at the DMV. What ended up happening was a bit different. Over the previous three lessons, I’d become increasingly more confident with a number of skills, including parking, lane changes, and merging onto crowded interstates, but this particular morning my driving was a bit shaky, and I knew it. knew I was probably just letting nervousness get to me, so I tried to focus and eventually got slightly better at driving. I noticed that Mr. Thompson was gradually giving me less instructions as the lesson went on, but I also thought my driving in the first 30 minutes had been so bad that I wouldn’t blame him at all if he decided not to test me. If he decided not to test me, I would end up having to go to the DMV and take the test there normally, and I was confident I could pass that. Still, I knew it would be nice to get out of the way that day. Around 1 hour 20 minutes into the lesson, Mr. Thompson said to me, “Give me your best”, and stopped giving me any instruction or guidance whatsoever except when to turn. I thought this was a last-minute preparation for the test, so I did my best, and my driving improved somewhat from the beginning of the lesson. Around 15 minutes later, he had me pull the car back into the parking lot. At that time, I thought the test was about to begin, but instead Mr. Thompson told me I had passed. It seemed he had given me the test without telling me he was testing me. I was probably better off that way. Shell-shocked, I spent the last 20 minutes of the allotted lesson time completing the required paperwork.

So, I have my license now! While that is a big accomplishment, I know that I still have lots of work left to do. I certainly will need to fine-tune the driving for awhile before I feel comfortable making extended trips by myself. I also need to, of course, get myself a car. I have been saving money for this situation and I am ready, but the process may still take a bit, especially since I didn’t even allow myself to really start looking until after I knew I had passed the test.

In wrapping up my discussion of learning to drive for now, I want to share a few insights I have taken away about my own driving that may help other people with autism trying to do the same thing. For me, the initial struggle was just with not panicking. People with autism tend to get overstimulated easily, and I am no exception. There is a lot to keep track of when driving a car, between your hands, your feet, and what is happening on the road, and at the beginning it was too much to manage. I am confident that if I had not gotten lessons with a trained instructor, I probably would not have overcome this part. I’ve now reached the point where certain activities and actions are becoming unconscious, so I have at least SOME mental headspace left over when driving, which is important when causing me not to panic.

Once I learned how to not panic while driving, spatial memory was the biggest obstacle. My memory for dates, names, and music is great, but where things are located? Not so much. I needed to adjust my mirrors at the start of every lesson, and it took me about seven lessons before I actually remembered how the controls worked and didn’t have to ask Mr. Thompson for help. This transferred to the road as well, especially with turning. I knew the hand-over-hand motions I needed to make to make successful turns. By early July, I’d gotten to the point I could successfully turn in a parking lot or in a low-traffic environment the vast majority of the time. But, if you put me on a busy street where there was more going on, and I had less space to process how to turn, I struggled. I just needed a lot of practice to fine-tune this skill, probably more than the average person does. Because my memory is poor, I needed to compensate by making this skill as ingrained in me as possible, so I don’t have to remember how to do it.

However, I’m amazed things got this far. I’m incredibly thankful to Mr. Thompson for his patience. When I got in the car for the first lesson, I was terrified and not entirely sure if I would be able to do it. Considering how poor my spatial skills are in other areas of life, I was lucky that keeping proper distance from other cars and staying on the right side of the road gave me much less trouble than I thought they were going to. I also am thankful to my sister for all her many hours of hard work, including the lessons during winter that gradually introduced one skill at a time (the gas, the brake, turning, etc.) in a way that didn’t overwhelm me. I want to emphasize that, as you may have heard, if you’ve met a person with autism, you’ve met a person with autism. Some others with autism have vastly different strengths and weaknesses than I do, and these strengths and weaknesses should be accounted for appropriately. But I hope this gives good guidance on how to start from scratch in teaching someone with autism how to drive. I am amazed this has completely come together this year, and I am greatly looking forward to the freedom I’m going to have once I get my own vehicle.

Life update: Everything’s happening at once, but it’s a good thing

This has been the busiest month of my life, but in a really good way. I figured I’d take a moment over this long 4^th of July weekend, which is definitely my longest break of the month, to reflect and be grateful for all the good things that are happening and also update you all about them before retreating again likely until the end of July or beginning of August.

First and foremost, I got a new job! Some of you may have seen me post this on Facebook a week or so ago, but now I am a week into everything and can tell you more about it. The company I worked at gave me the opportunity to interview for a different, seemingly better position, I went through the interview process, and now I’m a content writer instead of a data entry specialist. So far the work has been challenging, but I can tell it is a good fit for me. Instead of writing job descriptions, which max out at 250 characters, I now write company descriptions that are 200-250 words each. While there is some information I am required to include in each description, and I am required to follow a style guide, I am given much more latitude in how I approach these, and it truly feels like I’m using my writing degree for my job for the first time, which is an exciting development. I also am occasionally updating some of the old job descriptions on the website and editing them to make them better, which I enjoy even more. The level of detail required is intense, and I receive much more feedback than my previous job, but I’m excited to learn and grow.

Speaking of things requiring writing energy, I have also joined a Skype creative writing group for adults with autism. The timing of this group has turned out not to be ideal with everything else going on in my life, but I’m enjoying the chance to flex my creative chops and receive real feedback on them. We write one 500-3000 word prompt each week, which is a busy pace. Once I’ve edited them enough, I may post one or two of them on here. For some reason, all my stories so far fit squarely into the horror genre, and most of them do not have happy endings either, but I’m enjoying diving into characters and writing in ways that are completely out of my comfort zone.

My driving lessons continue. At the moment, I am paying for them myself and hoping to get reimbursed by the CHOICES program later. I have three more scheduled in the next few weeks, with the goal to get my license at the last one on August 4. Mr. Thompson, my instructor, did say I had improved considerably at turning during our last lesson a couple weeks ago, so I hope to continue to grow so I can get my license. Ironically, one of my primary motivations behind getting a driver’s license was to open up new job opportunities for me, and now I’ve just gotten a new job anyway, but I’m still excited to finish this task, as it will offer me many other opportunities to grow as well.

Next, it’s July, and that means the 5^th annual Southeast Adult Autism Symposium that I am involved in is coming up. We are doing it virtually again this year, and it is honestly much less stressful because we are largely repeating the format we did things in last year, so there are less things to figure out and questions to answer. It still will require a lot of planning and time though as we get close to the conference dates of July 23 and 24. We have a lot of good presentations this year, including one on legal issues with autism such as how to start an ABLE account and how to get out of a conservatorship (quite relevant lately), autism and suicide prevention, and how to navigate the mental health system. You can go to gcaspies.org if you want to register or learn more about this event. While the symposium is virtual, we also re-opened the center and had our first in-person support group meeting last week. It was wonderful to meet a handful of people that I had only previously met on Zoom. We plan to continue weekly Zoom meetings but also offer monthly in-person meetings.

Finally, since the pandemic is ending, I’ve been doing a lot more visiting with family and friends. It’s nice also to have an apartment that I love and feel confident entertaining others in. My brother and his wife came to visit two years ago, and it was the first time I had seen them in 2 years. Those who know me well know I was anxious about this visit, as the chapter of my life where I lived with them in Maryland was a great one, but it ended up turning out really well. We had a great family cookout with them at my sister’s house, and it was a good chance for everyone to catch up in a relaxed environment. My friends Sarah, Robert, Cindy, Andy and little 4-year-old Bethany all also came to my apartment on Friday, and it was good to catch up and spend a fun day at the zoo.

I’ve certainly been making up for 2020 lost time this month, haven’t I? I’m trying to really take it easy at night and do relaxing activities to center myself because the days have been so busy, but I really am enjoying it all. By the end of July, the conference will be over, driving will be almost over, and I’ll be almost a month into my new job, so things will begin to feel slower. But for now, I’m just trying to enjoy all the blessings of the season. I look forward to updating more about how the conference went and how the job is going at the end of the month.

Adulting with autism: Learning to make it up as you go

If I had to pick one seismic moment that shaped the way the rest of my life would be for the next eleven years (through today), it would be my mother passing away on August 11, 2010.

It is said that you may not be an adult before you lose your parent, but after you lose your parent, you become more of one. That was certainly the case for me. My biological father passed away when I was two long before I could develop an attachment to him, so that was different, although I’ve built a relationship with my stepfather that is so strong it will feel like losing a parent when he eventually passes away. But losing my mom happened at a key time where it shaped the course of my life.

I had just graduated from college at Elon after four difficult years. I honestly had spent too much time at Elon just surviving to even begin to think about planning for the future, and it was beginning to show as I had no idea where to begin to even start the job search. And when I came home, it was obvious something was very wrong and Mom was sick, and I felt I needed to spend as much time with her as possible until things were better.

After she passed away, I felt like a rudderless ship. I was already careening through life in one aspect: the structure of school and just passing this class to get to the next one had shaped my entire life from kindergarten through age 22, and now that structure was about to go away completely as I began to hunt for a job. But my mom passing away removed structure as well. She was the person I always went to. If I had a problem, I would call her and she would solve it, or at least give me good advice on how to solve it that made me feel more validated in my decisions. When my mom was still alive in my early twenties, I had yet to discover how touch-and-go adulting really is. Suddenly, you must make all the important decisions, and often it is not clear what path is the best path. It can feel almost improvisational in nature. Sometimes you make what is clearly an objectively good decision, only to run into an obstacle you didn’t expect. It becomes quite easy to beat yourself up over that, when you did nothing wrong. And sometimes you make what is objectively a stupid decision and somehow get rewarded for it, which may encourage you incorrectly to do it again. I had just passed through an almost contrived difficult college situation where a lot of the bad things that happened to me were my fault, so it was easy to believe that would continue to be the case in adulthood. My mom was never there to guide me through those situations. I had to figure it out on my own. My sister did her best to step in, but she was grieving. We all were. She gave me a place to stay rent free and gave me significant help in the short term, but having deep life discussions was simply nothing either of us was up for at the time. And can you really blame us for that?

To this day, there are times I still feel like a rudderless ship. My job searches have evolved over the years from “let’s get a writing and editing job” to “let’s get a library science degree to make myself more marketable” to “oops, there are no library science jobs and the ones I’m applying for aren’t hiring” to “hey, let me get a test scoring job at Measurement, they hire anyone” to “hey, this is pretty fun, let’s stay here a few years” to “crap, I don’t get paid in the summer, so then I run out of money and I really need to find something year-round” which has led me to the wonderful job I have now. I still don’t feel like my career defines me though. If you had to ask me what I am and what I do for a living, I couldn’t give you a one-word or one-sentence answer. I work as a data entry specialist and help write job descriptions, but I also spend a lot of time volunteering at the Chattanooga Autism Center. I play and sing music. I write blog entries like this one. It took me awhile to be OK with not letting one thing define who I was, but I think I’m at that point now. Meeting other friends who don’t let their career define them has helped.

This entry feels quite rambly, but what I’m here to tell you is this: If you’ve lost a parent, or if you’re just becoming an adult and trying to find your place in the world, it gets easier. The world is crazy and we have to fumble our way through the dark as we go along, but eventually we do find the answer. For people with autism like me, this can be especially disorienting. We’ve spent our whole lives in a very structured school environment. Some of us thrive with that structure and some don’t, but none of us are equipped to deal with the touch-and-go nature of the “real world” once we get out. It’s the type of thing that makes me feel constantly on edge sometimes even when there is nothing to be stressed about. I just don’t know how all these things I’m working on are going to go. For example, I’m doing my best to get better at driving, but I’m running into a lot of obstacles. I need to do my best to deal with the obstacles and not let them phase me; if I am continuously making progress, I’m doing well.  The more I go through life, the more I have figured this out, and the less stressed I have become. And of course, sometimes “making progress” can be defined as “deciding something truly isn’t for you and letting it go”. You can do that too. It’s all up to you. Adulting is truly a scary amount of power.

Reflections on COVID-19 as we begin to get “back to normal”

In March 2020, I just couldn’t anymore.

I don’t mean that in the sense that you should have been worried about me. But I was struggling. I had just finally gotten a full-time, year-round job where I worked from home (even better!) and I was beginning to get comfortable in the role. But socially, things were complicated and not really progressing the way I wanted them to. It was stressful to just get up every day and go about my daily business. It wasn’t really anyone’s fault; my social anxiety was just beginning to take over my life. Combine that with a difficult living situation and I was under a constant state of stress.

But then came the pandemic. Suddenly social anxiety didn’t matter because there weren’t social activities to go to. Combine that with a sudden positive change in the living situation, and I began to breathe fresh air.

I don’t mean this entry to minimize the impact of COVID-19 on millions of people’s lives. There has been death and suffering all over the world. But as hopefully the last entry I have to write about COVID-19 for awhile (fingers crossed for no winter – or late summer – surge!), I wanted to take a moment to talk about its impact on my life overall. While for some it caused misery, for me it was a reset button. And sometimes in life, when you get dealt a lucky hand, you just have to embrace that luck.

I have written for several years about how online communication is simply easier for me than in-person communication. Suddenly, all communication I was doing was online. I thrived in this setting. As someone who has been participating in hourlong Skype and Discord calls for many years of his life, I was more equipped for “the Zoom revolution” than most. There were times it was frustrating, because even my introverted self acknowledged that it was not a substitute for in-person communication. And yet it also made things easier for me. If the autism conference were in-person with in-person planning meetings last year, I don’t think I would have taken nearly as big a role in it. But sending e-mails and teaching people how to use the computer in the way I’ve used it for the last few years was just easier. There was also less expectation and emphasis on professional appearance, which is something that I struggle with more than most. Suddenly, whatever shirt you showed up with in the Zoom meeting was good enough.

I even was able to refresh some of those social situations I was anxious about. I was able to talk one-on-one and have small socially distanced gatherings with the people I wanted to talk to, and disregard the rest. Now that in-person interaction is beginning to happen again, my in-person interactions with friends I have been mostly talking to online for the last year have strengthened, just because it’s been easier to communicate with them.

There has been hard times for me in the past year, too. Winter was particularly difficult. I had a family COVID scare in December, and even when that was over, case numbers were so frightening I cut my social bubble down from 5 to 2 and spent a lot of time, too much time, alone. I’m a strong introvert but even I can only take so much. I started finding myself incessantly texting friends just out of boredom and loneliness, and hoping they didn’t grow annoyed with me. But for the most part, I recognized that I was incredibly lucky and blessed, and tried to focus on the positive things. I did not get sick, and my life circumstances changed in a way that made things much easier for me to navigate.

The past few weeks have been an at-times disorienting return to “normalcy”. Friday night, June 4, was particularly startling. I went to Nightfall, an outdoor concert, and then an indoor concert at a bar afterwards and was around thousands of people not wearing a mask. It was a beautiful, not-too-hot summer evening and I ran into many friends that I got the chance to say hi to, as it felt like the entire city of Chattanooga was out and about that night.

And yet, I felt strangely sad at the same time. “Normal” life in March 2020 wasn’t so great for me. I feel I have improved my relationships in some ways, but I’m still a little tentative about going back to the way things were (and of course I’m tentative about vaccination rates and masks and all that good stuff too, but this is more than that). In March 2020, the rules of our society changed, and they fit me much better. It is unfortunate that they had to change because of a deadly pandemic, but that is what happened. And now that we are going back to the way things were, I have a few words of advice to offer.

Many people with autism like myself are either introverted, shy, or both. In my case, my social anxiety stems from repeated negative social experiences in college that got me off on the wrong foot. But it doesn’t mean I don’t want to contribute. It just means the rules of society weren’t always fit for me to flourish. Between my anxiety and the fact that I am less than great at small talk and joining and participating in large conversations and circles at a social gathering, it seemed I was playing life on hard mode. The past twelve months, by contrast, were easy mode for me. I know many people that have talked about how Zoom interactions can be fake and stilted and make them feel uncomfortable and incredibly unfulfilled. Suddenly, communication felt difficult.

This feeling of disorientation is how I and how many other neurodiverse and socially anxious people feel all the time, outside of March 2020-May 2021. It’s not that we don’t want to talk to you. It’s not that we’re standoffish. It is just that we struggle a little at getting things going. In this age when acceptance of neurodiversity is increasing, acknowledgement of these differences is a crucial next step. I’m as excited as everyone else to be able to see people again, because living in my own little bubble was hard for me, too. It’s just going to take me longer to adapt, in the same way it took me less time to adapt than many last year. And these differences should be accepted and embraced.

Learning to drive (part 3)

Since I wrote about driving last, I have completed two more driving lessons, #4 and #5 with Mr. Thompson. Unfortunately, I did not ultimately end up getting my license at the end of the 5^th lesson with Mr. Thompson. However, during this entry I will talk about what transpired in those two lessons, and what will come next for me.

After the lesson where my sister came along, I was ready for another 2 hours alone with Mr. Thompson. In the fourth lesson, I think I generally improved. We spent a lot of time driving in especially heavy traffic, driving on Gunbarrel Road and even Highway 153. There were many traffic lights and sudden adjustments I needed to make on these crowded streets that are packed with stores and businesses. While my nerves were frayed and I was more worn out than usual at the end of this lesson, there were no major mishaps like the second lesson, and I think I acquitted myself well. One incident I particularly learned a lot from was in one of the few sections of the lesson that was supposed to be calmer driving. We were driving on a wide 45 mph road where it is honestly difficult to go below 35, but I had a truck below me barely doing 30 mph for several miles. I got to learn how to keep a safe following distance and adapt to this situation. It really is a lot more touch-and-go than I realized. I just had to constantly adapt to what the truck was doing. Sometimes the truck would speed up to 35-40 mph and get me hopeful, and I would speed up too only to be forced to take my foot off the gas or even put it on the brake a few hundred later. But when the truck and I finally parted ways, I asked Mr. Thompson how I did at this and he said I did well, which built my conference at this skill.

At the end of the fourth lesson, I talked to Mr. Thompson for several minutes about what I needed to do to be able to get my license the next lesson. I asked him directly if I would be taking the driver’s test next time, and he said he would “decide after an hour of driving”. He said that my sister and I particularly needed to work on turns and not turning my whole body but only turning my hands across the wheel when I turned. I left with that advice in mind and prepared to come back two weeks later.

In the two weeks between the fourth and fifth lessons, my sister and I went driving several times. We focused a lot on turning, and I felt confident I had developed an ability to turn without turning my whole body. But during my fifth lesson with Mr. Thompson, I knew about twenty minutes into the lesson that he wasn’t going to test me that day when he had me pull into a church parking lot. He said I still was turning with my whole body. I decided that since Mr. Thompson and I were again driving in some higher-stress situations, the more different things I had to focus on in the driving situation, the more likely I was to regress to driving with my whole body. It is worth noting that turning with my whole body is an autism trait I have a difficult time controlling, and I mentioned that to Mr. Thompson as well, but it still is something I need to limit to be safe on the road. I still tried to make the best of the remaining two hours we had together. A lot of it was spent on very winding rural roads where I could practice my steering, and I thought I gradually grew better at this as the lesson went on.

At the end of the lesson, we talked about next steps. In the car, Mr. Thompson said he felt I needed at least two more lessons before I was ready to possibly take the driver’s test. I told him that the Choices program had been paying for my lessons, and he said the first step would be to call them and ask for two more lessons. The next morning, I did this, but my Choices representative suggested on the phone that I try to schedule more lessons with the driving school up front, as it could take a long time to process the invoice for two more lessons. I called the driving school representative, Terry, and she indicated that I should be able to do this. She was going to ask Mr. Thompson how many more lessons I needed, and after that she would send the Choices program an invoice and get back to me.

Three days later, she got in contact with Mr. Thompson, and as it turned out, Mr. Thompson said I needed four more lessons. She sent the invoice to Choices and my Choices representative called me back and said that they had begun processing it, so now I could call Terry back and begin scheduling my lessons. When I called Terry back, however, I found that she had changed her mind and I would not be able to schedule any lessons after all. The driving school had decided it would be too much paperwork.

Consequently, now I am in a frustrating bit of limbo. I do have four more lessons with Mr. Thompson to look forward to, but it will likely be at least another month before the next one. Typically, Choices takes about two to three weeks to process invoices. After two to three weeks, I will be able to schedule the lessons, but then Mr. Thompson is typically booked two to three weeks in advance. So, in total, I’m looking at a 4-6 week wait here. While this is a bit frustrating, I am determined to keep going. Since I still work from home, I’m not in a terrible rush to get my license, and I know I will learn best if I get 4 more lessons with a trained professional. In the meantime, my sister and I will keep driving so that I do not grow rusty. It is frustrating however because I could have simply paid for the lessons myself and bypassed Choices, and if I had known I was going to be forced to wait this long, I probably would have done it. However, I’m going to embrace the wait for now. Hopefully, I will be able to resume this series in another couple months with some more exciting news, after my lessons with Mr. Thompson resume.

Life update: Learning the new rules in an age of no rules

Much has been made on social media lately of 2021 fashion trends. People are talking about blazing their own paths. After all, since many people have been stuck in their pajamas for an entire year, nothing’s technically “in” anymore. We all must follow our own rules for what’s in and what’s out.

In fact, all of life is kind of like that right now: we’re just making up our own rules as we go along.

Living in a world that seemingly has no rules is terrifying for an autistic person like myself. While I’m grateful that things certainly are trending in a better direction than they were during this past incredibly bleak winter, I’m full of doubt and questions right now. I just moved last year, and I feel like I’m finally getting to explore my surroundings for the first time after spending most of a year limiting myself to going to the same places and seeing the same people over and over again. I’m engaging with the community for the first time again. Suddenly, the CDC says it’s OK for vaccinated people not to wear masks, but at the same time, a lot of businesses are still requiring people wear one because it’s easier than checking people’s vaccination records, so you always have to have one with you just in case. But since I must have it with me, when do I want to wear it and when do I not? (It stayed on in Walmart last weekend, for the record). On a personal level, I am getting ready to have a driver’s license, and all the doors that will open in my life. But of course, I have a bit of trepidation about how quickly I will feel up to driving cross-town on a regular basis, or going away on trips that require multiple hours of driving. (As a side note, while I was told there was a chance I would take my driver’s test on May 24, it ended up not happening. My instructor said I need two more lessons. I’m not in any hurry and I’m definitely up for some more practice, so I’m trusting the process).

All of this is to say – it’s OK to not feel normal right now. Maybe when we naively thought last year that this weird time would only last a couple weeks or months, it was easier to think about what lie ahead. But things like pandemics don’t have clean endpoints. We must figure out for ourselves what we want to do. And we also must worry about public perception. Believe me, I don’t enjoy wearing masks, and I would love to take it off. I have faith that the vaccine is working, so I believe that the mask carries little nonceremonial purpose for me at this point. However, I don’t quite trust the world situation yet, and I also don’t want to look like I’m someone that doesn’t care for my neighbor. After a year, we have a right to feel traumatized and tentative. But right now, no one really has a right to feel judgmental. We all are figuring out when and where we feel comfortable to do things. If someone judges you for your decisions, don’t take much stock in it. We are all reacting to this situation in a different way, and anyone who is overly harsh to others about it probably feels insecure themselves.

There are many small celebrations of this time as well. I hopped on a plane and was able to see my dad in North Carolina for the first time in 10 months, which was great. I also was able to gather with a few friends who I had not seen in over a year. Some of us remarked that it felt weird, but nice, to even hang out with friends or have the option of going to someone’s house that wasn’t their own again. I’ve been able to attend in-person church, and it felt incredible to be around that many friends at the same time, and even hear 50 voices read or pray in unison. I have been gradually going to restaurants more, and that is something to celebrate too, just because it was a part of normal life for me that essentially disappeared for a year. We are getting there. And yet there is a tentativeness, a hesitation, because every time we took one step forward in 2020, it seemed like we immediately took four steps back. And so, we don’t want to do that again. And there’s nothing wrong with that.

In a few years’ time, a lot of us will look on this transition time as a blur, as a time when things started to happen so fast, we don’t even realize how we got from point A to point B. But in reality, we are incredibly lucky. Things are beginning to look up. We are right to be careful, and we are right to even be a little scared. After all, it can be very unsettling when there are no rules. But on the other hand, it’s liberating for some of us not to feel forced to follow rules as well.

Learning to drive (part 2)

Note: As of today, May 20, I still do not have a license,, but I will be taking the driver’s test on Monday and talking about it in part 3. In the meantime, this entry talks about my first few in-car driving lessons at Haman’s driving school.

I always can recognize my driving instructor, Mr. Thompson, by his cowboy hat.

In this day and age of mask-wearing, sometimes it is hard to recognize people by their pair of eyes, especially people who might be new to you. But Mr. Thompson’s cowboy hat lets me know that it is time to get ready, get over my fears, get behind the wheel, and just drive for two hours.

I really was not mentally prepared for just how thorough my first driving lesson would be. In the classroom, my previous teacher Mr. Scott had described the driving lessons to us to get us ready. “They will put you through your paces”. “You will be exhausted and want to take a nap afterwards”. But I really couldn’t understand the true extent of what he meant by these things until I showed up to drive myself.

In fact, Mr. Thompson and I were scheduled for five two-hour driving lessons. One nice feature of Haman’s driving school is that I could schedule these driving lessons whenever I wanted to. I am a night owl who tends to not always think clearly in the morning, so I scheduled afternoon lessons and tried to schedule them on days where I didn’t have a lot of other things going on, because I knew I would need the mental headspace to fully devote myself to driving.

Mr. Thompson greeted me and from almost the first minute was all business. He wanted to know how much driving experience I had had before. While I had driven around parking lots with my sister plenty of times, we had only ever driven on a road once, and I made that clear. I was very upfront about my autism, telling Mr. Thompson about it in the first five minutes of the first meeting we had. I also told him that, despite the fact I’m almost 33, this was my first attempt to drive. He seemed to take it in stride. I did not know specifically what challenges the autism would cause, but I figured between my generally poor hand-eye coordination and spatial awareness, something would happen that Mr. Thompson should be aware of.

Our first lesson seemed generally designed to build my confidence. We spent the first 30 minutes just driving around parking lots, practicing turning, slow-speed driving, and other basic maneuvers. Haman’s driving school is located just off a busy road here in Chattanooga called Hixson Pike, and to go anywhere, we must drive on that road first. Eventually, we inevitably pulled out of the driveway. I was tentative to say the least, but something about Mr. Thompson’s instructions just gave me complete confidence. He gave clear instructions using words that even I could understand, and always gave me plenty of notice about things coming up in the road that I should know about. During the first lesson, I felt like I was under a kind of “driving hypnosis”, and no matter what he told me to do, I was going to be able to do it. Compared to our later lessons, we didn’t do much, mostly staying in the Hixson Pike area but I was able to navigate and follow most of his instructions.

One thing that affected my confidence somewhat was that while I always kept my hands at 9 and 3 on the steering wheel, Mr. Thompson would keep his hands at 4 and seemed to guide my hands along at times into doing the right thing. He also had a brake on his side of the car that he was able to use when necessary. Because of these two things, and because I did feel hypnotized, I wasn’t entirely sure how much of the actual “driving” Mr. Thompson was doing and how much I was doing. But during the first lesson, I was okay with this. The most important thing to me after that lesson was that I felt like I could do this. I was worried I would have difficulty with directions, with spacing myself out appropriately from other cars, and with staying in the correct position on the road, and this lesson helped assure me that all three of these things would be just fine. I did indeed come home, crawl into my bed, and take a nap afterwards, but I felt confident things would work out.

The second lesson did not prove as successful. Two things I can say about Mr. Thompson are that he is a serious guy and that he does not waste a second of time in our two-hour sessions. While the first session Mr. Thompson had taken plenty of time to make sure I got acclimated to the car and how it drove before unleashing me onto a high-traffic road, I feel the second lesson started a little too fast. We were already turning out of the parking lot onto Hixson Pike within 10 minutes, and I was struggling the whole way. Even today, 3 months after I have started to drive, the first 10 minutes of driving are always the most harrowing part for me. It takes my brain a few minutes to recognize that it is doing something quite different than it is used to, and respond appropriately. This time, however, Mr. Thompson was clearly unhappy and even deservedly yelled at me one time when I almost caused an accident pulling up to a stop light. It took me a long time to mentally recover from this. In all honesty, I should have probably asked Mr. Thompson if I could pull over and compose myself for a few minutes, but I kept going and making more small mistakes. It was probably an hour into the lesson before I felt myself again, 45 minutes after the near miss happened. The second hour of the lesson was a little better and I began to gain some confidence back. The main thing for me during the second lesson though was just how hard Mr. Thompson pushed me. I got to drive on a 55-mph highway for the first time, got to drive through some very twisty and turny rural streets, and got to drive on a crowded area near where I attend church where there are constantly people pulling out of parking lots to watch out for. I mentioned how overwhelming this all was to Mr. Thompson after the lesson, and he said he wouldn’t be able to sleep at night unless he put his students through every possible driving situation there was. His devotion to his job impressed me.

Unfortunately at that time, even after the second lesson ended, the panic continued. I realized I needed to practice more to really make the best out of these lessons and get my license at the end of the process. I rescheduled my third lesson so it was a week later than originally planned, and asked my sister for more practice with additional things. In particular, I wanted to practice backing up and parking. I would always need to back out of my parking lot to go anywhere. In addition, I knew that backing out was always the first thing we did at each driving lesson. If I could learn how to do that, I could set a good tone for myself and prevent some of the panic attacks that had set in the previous time. My sister also decided to come with me to my third lesson. She wanted to see Mr. Thompson in action herself to learn how he taught me, see what worked and didn’t work, and possibly use this to inform some of her own teaching. I also spent some time driving with friends who had offered to help me. Previously, I had not been confident enough of my driving abilities to allow myself in others’ cars, but I began to realize that just getting drive time was important, and I was a conservative enough driver that if we stayed in a safe area, I wasn’t going to cause any issues.

The third lesson went much better. Mr. Thompson did not push me as much as he did during the second lesson. While we did a couple short stretches of highway driving, the majority of the lesson took place either downtown or in a windy country area of Chattanooga near Soddy Daisy. Both areas were easier for me. The third lesson was when I finally began to gain a sense of speed control and the movement of my foot between the gas pedal and the brake began to feel more instinctual. An interesting turning point happened during my third lesson when Mr. Thompson began to make small talk with my sister, and I realized that I didn’t know anything about his life because we had barely made any small talk before. Part of this was because it had taken 100% of my energy to focus on the road, and part of this was, of course, because my autism causes me to tend not to make any small talk unless I am really pushed to make small talk. I realized, however, that if I were to truly be a successful driver, I would need to be able to talk to people while I’m driving and deal with minor distractions while still having control over the wheel. While the conversation was an annoyance at the beginning of the lesson, by the end of the lesson I had become used to it. During the fourth lesson with Mr. Thompson, my sister wasn’t there again, but I made a point of trying to talk to him some during the lesson during some of the slower points, because I realized how much he enjoyed that.

I talked to my sister after the lesson, and she said that she had gotten a lot out of it. She had learned how Mr. Thompson worded things in a way that I understood them. She also said, “I know Mr. Thompson’s hand is always on the wheel, but you are doing most of the driving. He isn’t actually helping you often at all”. That helped build my confidence back before the next lesson.

While getting my license is, of course, the goal, I felt proud of how far I had pushed myself to this point. I’d done over 15 hours of driving total between lessons and driving with others. I had driven on all manner of streets possible, and knew this was something I could do. Now it became just a matter of putting the finishing touches on with my last two lessons, and hopefully getting my license.

Learning to drive (part 1)

Note: This is an entry where part 2 will definitely NOT immediately follow part 1, as it is still in progress! Look for an update on this topic in late May or early June. I have been taking things slow, but I will almost certainly attempt the driving test before the end of May.

When I was 16, learning to drive was never even a thought. I asked my father about this topic and he said that it was never a conversation that came up, even privately between my mother and him. It was never something I thought about seriously, either. It was just a known assumption: I couldn’t do it and there was no need for me to do it. I took the bus to school and back, my parents were fine with giving me rides to work and back two days a week, and I went to church with my family. Meanwhile, I figured I couldn’t do it because driving seemed to combine a skillset of everything I was bad at: directions, hand-eye coordination, spatial relationships…it could be a nightmare. While I felt like I had a good handle on my life when in high school, the thought never came up. I even chose to attend Elon University for college largely because it had a small, walkable campus. Part of this was so I wouldn’t get lost but part of this was because I knew driving was a nonstarter.

As college progressed and my mom passed away shortly after I graduated, I went through a few years where I definitely did NOT feel like I had a good handle on my life. Certainly, adding driving to the mix at that time seemed out of the question. So, as I progressed through my twenties, it just became a fact about me: Kevin doesn’t drive. Just like, “Kevin has autism” or “Kevin likes peanut butter ice cream”. And I was fine with that. I had to work around that fact in many respects, because being a “normal” functional adult living in the United States often depends on driving, but I made do. I Ubered to work and back. I got rides to concerts. I took Greyhound buses and planes out of town.

But suddenly, in 2020 of all years, an opportunity came. I joined the Tennessee Choices program, a program designed to give resources to people with disabilities. I had a few lengthy phone interviews right after I was first accepted to discuss what things I was going to do in the program. During one of these interviews, my case manager, Juliet, really pushed me. “What programs would you like? Is there anything you would like to improve in your life? Is there anything you would like to learn how to do?” After a couple minutes, I came back with, “Uh, maybe learning to drive?”

I’m not sure where that voice came from. And even after I said it, I was not sure how seriously this request would be taken. I did know that my coordination had been growing subtly better throughout my life, and I was certainly in a lot better of a place mentally to take on this endeavor than I was when I was 16. I knew that Juliet was writing up a large report about our interviews, during which we discussed many aspects of my life, and driving was a small part of those interviews. Imagine my surprise when only about a month after the interview, Juliet called me and said, “Please call Haman’s Driving School in Hixson to get enrolled in a class when you get a minute free. Choices has sent them a check, and they have confirmed they received it.” I was stunned but called them, excited but also very anxious about the coming endeavor. It was October and I was a bit relieved when Haman’s said the next available class was in February. This would give me time to mentally prepare and potentially spend some time on the basics of driving with a family member. But I accepted. I figured this would be my one shot. Finally, I could learn to drive, and even if I failed, I would still always know I had tried. Succeed or fail, this would make a huge difference in my life.

In late November, my sister and I started driving together. My sister knew this would be a tall order, so we took small steps, working only 1-2 hours a week and adding small bits of information at a time, because that is how I learned best. It took several weeks before I even made a turn in the car. In that time though, I learned how to adjust the mirrors, how to put the car from park to reverse and drive, and how to use the gas and brake pedal. It surprised me just how gentle you have to be on both those pedals to make the car go, and it took a long time for me to make the adjustment. Then we added turning, and then I started turning around the parking lot. This again was a bit disorienting at first. I had to learn the difference between sharp turns and wide turns. It was particularly hard for me to figure out how to realign the car in a straight position once I had completed the turn, but we practiced, and I got better at it. After this, we figured I had a good base of knowledge to at least start in the class. I mostly started these sessions with my sister just to prove to myself I could at least handle the basics. I didn’t want to be wasting anybody’s time, including my own, at the driving school, and I wanted to build my own confidence a little bit.

By February, I was ready to begin the classes. I was surprised to learn that Haman’s requires everybody to complete 4 full days of classroom learning before getting in the car at all with an instructor. On the other hand, this was a relief because it gave me a bit more time to practice with my sister in the car. I knew the classroom portion of driving school would not be overly difficult for me, and indeed it wasn’t. There were two tests that each student was required to get an 80% on to pass the class, and I got a 100 and a 94 on them. The class itself was boring, but essential because I really didn’t know anything about national or Tennessee state driving laws yet. It lasted from 9 am to 4:45 pm on 4 consecutive Saturdays – even with a lunch break, that’s a long time to sit in a classroom. Due to COVID restrictions, they were not having guest speakers or doing activities they usually did either – we really did just sit there all day. But I learned about everything from what to do when your car is on fire to how right of way works at a 4-way traffic stop to Tennessee DUI laws. My instructor, Mr. Scott, made a lot of jokes and at least tried to keep the class interesting. The class mostly consisted of 15- and 16-year-olds who were newly eligible to get their license. There were a few people in their 20’s, but at age 32, I was the oldest person in the class. I was quiet and sat in the back but took several pages of written notes each day. My goal was not only to pass the class, but also to pass the Tennessee permit test.

I knew that the final test of the Haman’s classroom portion was designed to be similar to the Tennessee permit test. I also knew that I knew nothing whatsoever about Tennessee driving law on the day the class started, February 6, and I would need some time to assimilate the 100-page drivers’ manual. Thus, I scheduled my permit test for March 1, two days after the Haman’s classroom portion ended.

The day of my permit test dawned dreary and rainy, and my niece took me to the Red Bank DMV. Typical for the DMV, even though I had a 9:30 appointment I still had to wait until 10:30 to enter the testing room. Entering the testing room was a frazzling experience, much like driving itself would prove to be. I had difficulty giving myself the vision test, and due to COVID restrictions, no one could help me, so I just had to gut it out myself, which included asking for wipes because the lens they wanted me to read through was painfully dirty. Eventually, I got through that and made it into the testing room, where I am happy to report I got only two questions wrong and passed the test on my first try. Permit in hand, I was now ready to get out on the road. The classroom portion of learning how to drive was straightforward enough for me, but now I knew the hard work, actually learning how to do it, would really begin.

On the COVID shot and autism: Why you should just get it already

So today I discuss COVID vaccine hesitancy and its link to autism. It’s not a fun subject, but it’s one very relevant to this blog. If you’re looking for a way to convince your hesitant friends and family members to get their shots, hopefully this entry can help with that.

I usually try to avoid political posts, but despite what some people may say, the following post, in addition to being political, intrinsically and unavoidably has to do with autism. Those people looking for more normal biographical fare from me, however, might want to check back next time.

So it’s been a really long, brutal year. We’ve come a long way from the panic and empty store shelves of March 2020, but in some ways, we still haven’t come very far at all. While humans are adaptable and we have found many ways to be flexible this year, we are still unavoidably at the mercy of a pandemic. Every time we start being less vigilant in our behavior, coronavirus cases spike, and friends and family around us become at risk of losing their lives. While humans are inherently social creatures, and we have found ways to socialize, our socialization will be cripplingly limited until we get this virus under control. And since we’ve literally tried everything else this year, what’s the only way we get this virus under control? Vaccines.

Now it’s been nice to watch the vaccine numbers tick up fast and furiously over the past few months, but we’re reaching a point at which we’re beginning to have more vaccine available than we have people willing to take it. Why is that? Some people are afraid of the vaccine because they are afraid it has tracking microchips in it designed to follow our every move. This has demonstrably proven to be false, and these people should also immediately stop using their cell phone if they are afraid of being tracked. Some people are afraid of the side effects. If you are really concerned that the vaccine will cause a bad reaction in you due to a condition you have or medicine you are taking, you should consult your primary care physician. They would much rather do that than hospitalize you due to getting COVID. For everyone else, side effects in the vast majority of people are, at worst, over two days after you get your shots. Meanwhile, COVID has the potential to either kill you or be with you for life.

But I don’t think those two reasons are the entire reason for hesitancy. I think some people are afraid of getting the vaccine because they are afraid it will cause underlying conditions in them or their kids, namely autism. As a person with autism, this offends me greatly. First of all, vaccines causing autism has been proven, numerous times, to be false. But let’s assume just to humor people for a second that there was a grain of truth to it. While I have freely admitted in this blog many times that having autism isn’t the greatest, I can’t die from having autism. I am lucky enough to live a fulfilling life on my own as an adult. I have my struggles, but they pale in comparison to the breathing problems that long-haul COVIDers are already having every day. Meanwhile, if I get COVID, I might be fine, but I might die from it, or cause someone else to die from it by spreading it without knowing it. Seems to me like taking a vaccine that might cause me to have some challenges but won’t kill me is automatically the better option than not taking it and risking getting something that has a legitimate chance of killing me or harming others. Being alive but with side effects is better than having a significant chance of death. End story. I find it offensive that someone would rather roll the dice and risk dying than roll the dice and risk having my life, because honestly, my life is pretty good, thank you very much.

In closing, get your shots, please. In many states, you can simply walk in and get it right now without an appointment, and the side effects will be over in 1-2 days, if they happen at all. If you know someone who is on the fence about getting their shots, I would recommend trying to convince them in this way. We’ve learned over the past year that many Americans are quite selfish, but even a selfish person has every reason to take this vaccine. For pure selfish reasons, I should take any shot that lessens my risk of dying, end of story. Any side effects I have have little to no chance of killing me. Even the Johnson & Johnson blood clots are literally 1-in-a-million (much smaller odds than the 1-in-3000 odds of blood clots with most birth control pills), whereas my chance of dying of COVID if I get it is much more than that. So just do it. It’s really not fun, I know. But the last year has also not been fun, and if you don’t want this 1 year of staying at home to turn into 5, you need to do what is right to protect yourself and everyone else.