My first “full-time” job: behind the curtain of the standardized testing industry

This is the latest entry in my biography series. Here I focus on my first full-time job, scoring standardized tests at Measurement, Inc. in North Carolina.

One activity I participated in during my early struggles in North Carolina was an autism support group. Unlike the autism support group that I attended later in Chattanooga, this was facilitated by a neurotypical person, so the focus was a little different. While some of the purpose of the group was simply to get people with autism out of the house socializing, another focus was on “improving” the life skills of group members and getting them hooked up with resources to find a job, an avenue to go to school, or some way to be productive in the next phase of their lives. As a result of these meetings, I also began giving talks and participating on panels of people with autism where I discussed my story. These were great opportunities for me because people who attended them were able to see that it was possible for people with autism to get college degrees and be at least semi-independent adults. While I only attended a few of these meetings before my graduate school schedule began to conflict with them, I did hold a note in the back of my mind that our counselor, Elizabeth, said. She mentioned that there was a standardized testing company in Durham who would hire people with college degrees who had no work experience, which matched my situation exactly.

For the first year after graduate school, I was at a bit of an impasse. I continued to live at my father’s house, be involved in church activities, and volunteer (mostly working from home) at the digital library. I also searched for jobs, and for the first year was mostly focused on library jobs. Eventually, however, I became desperate enough I was willing to try anything, and remembering what Elizabeth had said, some quick Google searching landed me on Measurement, Inc. I was pleased to see that the company was based in Durham, only about 15 minutes from my dad’s house, so I decided to apply. This was in late October.

After a quick interview and both writing and math skills tests, by the beginning of December, I was told I was hired and there would be work for me beginning the first full week of January. I was very excited. I knew job interviews had been barriers for me in the past, so I was thankful to find a job where the interview was not as important a part of the process as written tests. I was also excited to find a job where I would be out interacting in the community with other people again.

I still remember my first day of work well. After spending the first couple hours filling out preliminary paperwork and learning basic rules, we launched into the training for my first job. Measurement, Inc. standardized test scoring is project-based work. At the beginning of each project, everyone is given training to learn how to score the test they will be scoring for anywhere from the next 2 weeks-3 months. Projects I did while I was there included 1-state projects in Washington and New Jersey which took closer to 2-3 weeks to score, and multi-state projects like ACT and Smarter Balance which could take much longer. My first project, the ACT, was an essay scoring project. I was immediately overwhelmed by the volume of materials we were given. We would be required to score essays on a 1-6 scale on 4 different components, including the overall strength of the student’s argument itself, the way the student developed their argument, the way the student organized their argument, and conventions (grammar, spelling, etc.) The kicker was that we were given several dozen example essays looking at just what the ACT board felt a 1 essay in organization was or a 2 essay in conventions was. I left home after the first day with my brain completely fried. It was also somehow, at 27 years old, the first time I had ever worked a full 8-hour day!

Training was stressful because, after it was over, which generally took about 3 days, we had to take a qualification exam that we had to pass in order to be able to score the project. If you didn’t pass the qualification exam, you were sent home until the next project started, and would only be paid for the 3 days of training and not for the full month of scoring. So there was a lot on the line. In order to qualify to score the test, I had to score 10 “practice” papers that had already been given a “correct” set of scores, and score 80% accurately on at least one attempt out of three. Somehow, I got lucky and scored exactly 80% on my first attempt, so I was able to use the second and third attempts as less stressful practice tests knowing that I had already qualified to score the project and wouldn’t be sent home no matter how poorly I did on the last two tests. By the end, only about 70% of us had qualified. People who had been at Measurement for a long time told us that this was an unusually low percentage and these were especially difficult tests. I still just felt lucky to be there.

Then, the scoring started. I didn’t realize how repetitive a job this would be until we got going. At the beginning of each day, we would log onto the computer and a queue of tests would be waiting for us. We would start scoring, and do nothing but hit “next essay” for the entire rest of the day except for scheduled break times. Any questions we had were usually sent up by computer to our team leader and handled electronically. Because of the monotony of the work, over the course of the time I spent at Measurement I witnessed several people fall asleep on shifts or down 6 Diet Cokes in a shift in an effort to keep going. Just like training, my brain was fried at first. Even though I had passed the qualifying tests, live scoring was difficult to adjust to at first. My team leader was assigned to read behind my work and see if the scores I was giving were accurate, and she sent several papers back over the first few days in an effort to better calibrate my work. Eventually, I got the hang of it, but just when I did, Measurement, Inc. upped the ante. Because so few people had qualified, it was taking longer to score the essays than anticipated, so they began to offer optional Saturday and Sunday shifts as well as an optional 2-hour extension of Monday-Friday. Knowing that I needed money in order to move out on my own, I took as many weekday and Saturday opportunities as I could, though I did skip out on Sundays because church was quite important to me.

After about a month, we finished the ACT and moved immediately into the next project. There, I got to experience what not qualifying was like for the first time, as I failed to qualify for that exam even after three attempts and got sent home. It was a quite frustrating, stressful experience. I knew I had done well on the ACT project. But the Tennessee state writing test offered a completely new set of rules and essays to score, and because I wasn’t able to adequately learn those, suddenly, nothing I had done in the previous month mattered. Thankfully, I was e-mailed literally the night I failed to qualify with a separate opportunity that started in two days. I jumped at the chance. The catch: it was math.

Taking a chance on scoring a math test ended up on being one of the best decisions I ever made at the company, as I found I was quite good at it. The rubrics were simpler, so qualifying to score the tests wasn’t stressful as it was all but a foregone conclusion for me, and I was capable of reading and scoring test responses much faster than my peers, so there was always work for me. People reading this may be wondering how come math can’t be machine-scored. The truth is, these days math standardized tests have many essay questions on them also that do require humans to read them and assess their quality. I enjoyed the diversity of prompts I got to read. I discovered that you didn’t even necessarily have to know how to do the math question in order to score it; you just had to be able to follow the rubric. I scored plenty of responses to geometry and trigonometry questions that I would have been lost if I had actually attempted to do them myself. I continued to alternate between scoring math tests and regular written essay questions for the rest of my time at Measurement depending on what work was available, but I definitely preferred math, a thing I would never expected to say as an English major.

During this time, I felt happy to have found a job that seemed ideal for a person with autism. After all, no social interaction was really required except during training. I was able to be assessed on my sheer ability to read and evaluate essays and not have to worry about any office politics, and this suited me well. I was able to build a few modest friendships, too, because many people congregated in the same break room. After the occasional stress of the first month, it became a comfortable environment for me to get used to working 8-hour days and 40-hour weeks over the course of several months.

I was lucky enough to have fairly steady full-time work from January straight through July, with a brief week and a half in March being the longest stretch of time I had off. I soon discovered the problem with Measurement, however. It was seasonal work, and you were only paid for the time you actually worked on site. During the second half of the year, the company just didn’t have a lot of projects for the seasonal scorers to work on, so you just didn’t come in, which was great if you could afford it but not so great if you still needed money year-round like I did. Still, the 7 months worth of pay I received early in 2015 was 7 more months than I had received in all of 2014, so I was happy with that much. In fact, I had received enough money that I was able to move out on my own. Shortly after moving in October, I received another opportunity at Measurement, Inc. that would push my boundaries even more.

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Life update and a brief word on anxiety

It’s been awhile since I’ve talked to you all, but I’ve been – surprise! – pretty busy again. Thankfully, I’ve been writing this whole time, so I have quite a few biography chapters that I can also post on this blog soon for you all to look forward to. Today, however, I want to catch everyone up with what is going on in my life in 2020.

On August 1, I finally moved into the new apartment, and it has been everything I hoped it could be and more. The neighborhood is quiet, the maintenance team is responsive and friendly, and there are plenty of beautiful, safe areas to walk in the neighborhood. I even have a friend living within walking distance that I did not know about until after I signed the lease, which has been exciting for me, because having a friend you can visit safely during these weird COVID times is something to definitely be thankful for. I also have plenty of family living within a couple of miles of me, and they visit and help out often. Since I moved in, I’ve been so busy though, and things are finally, just now, beginning to settle down 6 weeks later (I hope, anyway?)

I got asked to help facilitate another conference, the Chattanooga Autism Conference, which took place this past Friday and Saturday. It felt more comfortable this time, because I had done it before, but it was still a lot of work. I really enjoy getting to help the community learn valuable information about autism through these talks, and I am thankful that we have Zoom which makes it easier to facilitate these discussions. I’ve also been asked to serve on the Chattanooga mayor’s council on disabilities, because they were looking for an autistic representative, and I am excited to be an advocate and hear a bit more about what goes on in Chattanooga policymaking decisions. Additionally, I’ve been investing a lot of time enrolling into something called the Tennessee CHOICES program. The CHOICES program is designed for people that need help with daily living skills. I am applying so that my niece can come by 10 hours a week to help me with daily living skills, and the CHOICES program will pay her for it at no cost to me. This has required many phone interviews about the exact circumstances of my disability and what I want out of the CHOICES program, but I am finally nearing the end of the process now. I do appreciate that the CHOICES representatives have been incredibly well-prepared and thorough throughout this whole process, and I think having the CHOICES program in place will be exactly what I need to successfully live alone for this next phase of my life. It is definitely something I would recommend to anyone with autism in Tennessee who is preparing to make steps to live independently. In addition to all these things, I’ve still been working my normal hours and attending and occasionally facilitating weekly Zoom autism support group meetings. I’ve even found time to write an article freelance for my friend’s real estate website, which you can read here if you’re looking for a little bonus writing from me today.  

Today though, I do want to spend a little bit of time talking about living alone. As I discovered in North Carolina, living alone can be difficult because it causes you to spend more time having to live with your own thoughts. This is only exacerbated by the pandemic this year. I am someone that usually deals with anxiety through a change of scenery, be it getting out of the house for a few hours or going out of state for a few days, and not being able to do these things as readily this year hurts. I am also an anxious person by nature, but I think that this year I’m beginning to discover a way to talk myself down. I especially get nervous in social situations, even via text message. The other night I texted my friend what felt like a pretty bold question, and when my friend answered the text but ignored that question, part of me wondered if I had been too bold, so I was anxious about it. But then I realized that I would have also been anxious if I hadn’t asked the question. If I’m going to be anxious either way, regardless of whether I ask the question or not, then clearly either decision is fine, so I shouldn’t be anxious at all. This is how I “tricked” myself out of being anxious the other night. Sometimes, logic works! I also am a big fan of sending difficult texts and e-mails right before I am going to be busy for a few hours, so I don’t spend the whole time staring at my phone or computer waiting for a response, and maybe while I’m being productive, the person will answer. It is so easy to get consumed by anxiety at this time, and having autism makes people even more inclined to be consumed with anxiety. But we really do have to take everything day by day.

I feel incredibly blessed that so many things are happening right now, and I am excited to see what the next chapter holds, though I am also scared about what the next chapter holds for our country. I hope these words about taking life and anxiety day by day will be helpful for others out there. This COVID situation has turned from two weeks to two or more years; it is a marathon, not a sprint. All we can do is commit to making each day the best that it can be.


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The importance of music throughout my adult life

Anyone who knows me will tell you that music is and has always been an important part of my life, both listening to and performing it. My mother and I discovered I had perfect pitch when I was 4 when, one Sunday, I came home from church and played on the piano a complete song I had heard in the service that morning. While I was in choirs periodically from elementary through high school, however, music didn’t truly become important in my life until after I graduated college. Music to me is not just a measure of what one person can perform by themselves, but it is also an important way of building community.

As I’ve discussed in another chapter, the summer after college was especially hard for me because I came home from college and watched my mother pass away from cancer during the ensuing two months in a time when I was already struggling to transition and figure out what I wanted to do with my professional life. One thing I did that summer was sing in the choir at Bethany United Methodist Church. My mother had encouraged me to sing in choir during the summers that I was home from college both because she knew it was a place I’d naturally fit in but also just to give me something to do. While I didn’t properly read music, I was able to use my perfect pitch and good musical memory to first match what people around me were singing in rehearsal and then later remember what I had sung before and be able to sing it more confidently. Thus, going to choir in the summer after I graduated was merely a force of habit, something I knew I’d be doing but didn’t put much thought into. And then everything changed the day after my mother died.

I was sitting at home waiting for our pastor, Jimmy, to come meet the family later that morning and discuss funeral arrangements when I suddenly became overcome with a need to do something during the funeral. I knew people would get opportunities to talk about how wonderful a person my mom was during the funeral, but I realized I wouldn’t feel as comfortable doing that as I would be singing. I thumbed through the United Methodist Hymnal, and after a few minutes I landed on On Eagle’s Wings. The song is a common choice at funerals, as those who attend the church regularly would know, but also one of my mother’s favorite hymns. I let both Jimmy and Sam, our music director, know that I would like to sing this as a solo. On Friday, we rehearsed it in church just to make sure I was ready to go, and then Saturday, at the funeral, I performed it.

As you might imagine, I have blacked out many details of the day of my mother’s funeral, including that performance. I’ve reluctantly sung On Eagle’s Wings many times since because the group I was with happened to be performing it, but the song will always hold its place in my heart as my memorial song to my mother, and nothing else. People seemed to like it, however, as they came up and complimented me afterward, but I was self-aware enough to realize that everyone was just trying to be kind to my family in the moment. However, as unlike previous years I continued to sing in choir into the fall and winter months, a funny thing kept happening. Sam kept asking me to do more solos, so he must have liked the first one also. I repeatedly accepted, with my rationale at the time being that nothing Sam asked me to do could possibly be as difficult as singing at my mother’s funeral, so I was up to the task.

Singing in the Bethany choir throughout the next seven straight years, even as I moved several times and went through graduate school and my first couple jobs, was an anchoring point in my life, a place I could come every Wednesday night and just be myself, even as the storms of life raged around me. Sam is a tremendous music director. I am lucky that the first two music directors I worked with in my life, Rick (who worked with me in the Mary Taylor church choir while I was in high school) and Sam, are as good as they are. Sam was a great director to learn how to truly be musical from. He always knew how to hone in on whatever the song we were working on needed to be successful. Whether it was a creative warm-up to start the rehearsal, a focus on consonants and vowels, or a focus on a tricky rhythm in a song, he knew what it took to make the choir live up to its potential. He also knew how to best serve each song musically, inviting guest drummers, flutists, and soloists at just the right moments but not overusing them. And through all of this, he was tremendously grateful and kind. He really cared for each of his choir members, was a nurturing presence in each of our lives, and devoted the last 15 minutes of rehearsal time each week to devotion and prayers for spiritual enrichment and just because he wanted to create a caring community. Throughout that hour and a half each week, I really grew not just as a musician as a person, and it was exactly what I needed in my life at the time.

Soon, that hour and a half became two and a half hours. The church bell choir that met immediately afterward on Wednesday nights had a vacancy open in the fall of 2011, about a year after I started in the choir full time, and I attempted to join. My first rehearsal was, honestly, a disaster. I knew I had the musical ability needed to follow along with the bells, but despite the bell director, Pat, stressing that you didn’t need to know how to read music to play the bells, I discovered that people did need to know how to read music at a level that was more advanced than where I was at the time. Also, my poor hand-eye coordination made it difficult for me to play bells at first. I wasn’t aware of just how much picking up and putting down bells and switching hands needed to take place to polish off a bell piece. Thankfully, after my first rehearsal, Pat saw some potential in me and worked with me one-on-one for an hour the next week to try to home in on where I needed help. By the end of the hour, I was playing the two pieces that we had been working on with few problems, and from then on, I felt right at home in the bell choir. We discovered that the best way to ensure my success was to highlight when I had notes to play in the written sheet music of each page, so that way I only had to focus on the picking up and putting down and didn’t have to worry about reading music. Again, for seven years, this added to my musical journey, as I discovered all the creative ways you can ring bells to glorify God. As if singing and bells weren’t enough, I also started playing keyboard in the dubiously named “Junk in the Trunk” band that periodically played praise and worship music in our church and also played at garage sales and other outdoor festivals in the area, where people would frequently sell junk out of their trunk.

The especially amazing thing is that all my musical experiences existed against the backdrop of other difficult things I have mentioned that were going on in my life. Of course, things really got off the ground right after my mom passed away, which is unquestionably the most difficult thing that has happened. But even throughout that year after her death where I didn’t do much else but grieve, at least there was music. Even when I was struggling through graduate school, at least there was music. Even when I was working 50 hours a week at Measurement, Inc., there was music. And then even when I moved away, there was still music. In Maryland, while I struggled to find my footing professionally and socially and generally had a miserable time at home, I did find a church, Ark and Dove Presbyterian, with a great message and choir, and got the opportunity to sing with them for 6 months. This included singing Faure’s Requiem, unquestionably the most difficult music I’ve sung to date but also some of the most beautiful. Given the background of everything else that was going on at my brother’s house at the time, I was happy to throw myself into that piece of music. When I arrived in Tennessee, the first thing I did after deciding what church I wanted to attend permanently, Northminster Presbyterian Church, was join the choir. Joining the choir helped me find some of my first friends in Tennessee also, and our wonderful director Lonnie continued to help me grow musically. Northminster’s choir has pushed me in that we generally only rehearse pieces of music for one or two weeks before we sing them live in church, so this has forced me to read and learn music more quickly, which has also made a better musician.

Indeed, music has formed the backdrop of everything in my life. Music has helped me feel socially confident. Even when I have felt lost in my social interactions with others, which has happened repeatedly throughout the last ten years, I have known that music is a language I do know how to speak that makes it easier to connect. Music helped me gain friends at Bethany that did tremendous things like throw a housewarming party for me when it was time to move into my apartment and a goodbye party when it was finally time to leave. I truly feel like I grew up in that church. Music helped me find people to talk to when I had none in Maryland. It helped me build quick friendships and social circles in Tennessee. It has always been there.

I do wonder, as I close this piece, what the future of live collaborative music will look like. Thankfully, even during this time of COVID-19, I have gotten the opportunity to both record music from my bedroom and living room that is used in Northminster’s services and attend the occasional virtual choir rehearsal at Bethany via Zoom, which I can now do from hundreds of miles away. But something is lost. If someone like me were looking to find their footing in the community, they would have to look at different avenues than live music right now, because it is simply not safe to perform together. I hope once we do get past this virus, these opportunities will continue, because music truly did help me grow as a person during times in my life where not much else was going my way. And I want that to continue to happen for others, too.

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Netflix series review: Love on the Spectrum

Netflix recently released a series called Love on the Spectrum. It highlights several adults with autism from Australia at various phases of dating and talks about the issues behind relationships. At 5 episodes that are around 45 minutes each, it can be binge watched in an afternoon if you so choose. I decided it would be a useful blog entry to go ahead and offer my thoughts about this series, which are mixed.

We’ll start with the good. The series really makes it a point to show that autism is a spectrum. Some people in the series have different levels of social abilities, and that is clearly highlighted – Mark, for example, is clearly a bit more adept than Kelvin though he still has his own issues, yet they are both shown going on dates with some level of success, even though the dates are more tailored to them. Mark is more suited for exploring a zoo and Kelvin is more suited for a sit-down date; these are highlighted. It also shows varying levels of success. While many people in the series are engaging in their first relationship ever, some are experienced daters, and a pair of couples that have been successfully together for many years are even highlighted, Thomas and Ruth and Jimmy and Sharnae. These couples are conveniently shown in the first and last episodes respectively, to both give the viewer a sense of hope in the beginning and remind them what the end goal is in the end. A proposal, naturally, ends the series on a happy note. Another strength of the series is that it introduces you to the characters’ families and tells you their story, which makes the viewer care about the outcome of these dates. It usually highlights both dates’ interests ahead of time, so the viewer generally knows where the conversation is going to head and can often tell if the date is going to be a match or bust before the participants even can, but the dramatic irony that brings makes for good viewing.

The second through fourth episodes are a bit grittier than the bookends, which brings me to another thing I liked; the series does not hesitate to show the awkwardness of dating and interactions. Even though a lot of the scenes and scenarios are clearly scripted to some degree, the scripts make room for awkward pauses and uncomfortable reactions to people saying awkward things. It even makes room for drawing the fine line between parts of conversations that are uncomfortable, but don’t completely derail the date to more serious infractions that end up making the couple decide they aren’t compatible. Conversations are actually quite awkward. One of the parents makes the point in the series that, up to the point he went on his first date, her son had derived all his social cues from TV. This is problematic because conversations tend to flow seamlessly in movies, TV and radio. There’s no time for awkward pauses, because either the news is only 30 minutes long, the radio station is desperately trying to avoid dead air that will make people change the station, or the conversation mostly serves as a means to an end to further the movie plot, so there is no point in adding awkward pauses to it. Love on the Spectrum lives comfortably in these awkward silences. It also showcases how sometimes circumstances are out of our control sometimes. Andrew goes on a speed dating event and is excited to find that he received a match, Evie, only to find after he further contacts her that she is no longer interested because she “needs to work on her own life”. In the most uncomfortable scene of the series, a date disintegrates halfway through because the young woman has an anxiety attack. The scene ends cordially on the part of both parties, and it makes clear that the woman really wanted to engage in the date, she just became overwhelmed by her anxiety midway through due to no fault of anyone’s.

This brings me to the negatives. It frustrates me a bit that every single relationship highlighted in this series is between two disabled people. The implication in doing that is that people with autism are not able to have relationships with neurotypical, “normal” people, which is clearly not true. While obviously it is more likely that people with autism will be more compatible with each other, at least one different relationship should have been highlighted, especially since this series did such a great job otherwise in highlighting a variety of situations and characters. I also will admit that this series, because it is scripted, has a few contrived situations and scenes, and not everything should be taken at face value. One scene in particular stands out – when Mark goes to a bowling alley for a hangout with a group of his disabled friends and two “new girls” are conveniently there to talk to Mark; those conversations are highlighted and then you never see the young women again. I also wish there were this many speed dating events and dating boot camps for people with autism and disabilities in America. It probably would make things easier for everyone. I do think that it’s likely a couple of those situations were contrived for the purpose of the film. The conversations though, especially in the one-on-one dating situations, feel very real.

Overall, I would highly recommend this series to anyone who either has autism and is interested in dating or anyone who is interested in learning more about people with autism. This series shows that it is possible for people with autism to be in healthy, successful relationships, which is a wonderful thing. It also is not afraid to show some of the hard moments, missteps, and dates that went badly alongside the inspirational moments. I learned some things about simple conversational dynamics and relationships that I didn’t even really know before watching this series. It is definitely worth an afternoon of your time.



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Life update: Helping run a virtual autism conference….and moving again!

For once I have a life update that is intrinsically also about autism, because a lot of it will be describing what it was like to work behind the scenes at the autism symposium that just finished. I must say, it took a ton of work and planning meetings to put a Zoom conference together, but I am happy at how it turned out. The 4th Annual Southeast Adult Autism Symposium took place last week on Zoom on Friday, July 24 and Saturday, July 25 for about 4 hours each day, because we determined as a committee that people would likely not want to spend an entire 8-hour day at their computer. We lined up 6 speakers, 3 for each day. We did record the conference and the videos will be released publicly in a week or so.

The topics included, in order of how they ended up being scheduled throughout the weekend: 1) Autism and aging (how the autistic brain and perspective changes as a person ages); 2) Safe and healthy relationships for all (a presentation about boundaries and healthy relationships, especially as they relate to people with autism); 3) A panel of young autistic entrepreneurs who were self-employed or who had started their own business; 4) Mental health resources and information for people with autism; 5) Dating, relationships, and sex from the autistic perspective (presentation #2 was more from the clinical perspective) and 6) Tips for people with autism hoping to get a job. As you can see, it was truly a wealth of great information that is relevant to all adults with autism, and that is part of why we hope to share these presentations soon.

While I attended last year’s autism symposium, which took place in Chattanooga, I did no behind the scenes work, and of course I didn’t live in Chattanooga yet for the previous two (though I just missed 2018’s edition by about a week). I really appreciated the networking opportunities the 2019 conference provided, however, as those networking opportunities are sorely lacking for people with autism in other areas of the country. As my friendship with Nathan, the Chattanooga program director, grew in late 2019 he invited me to planning committee meetings. For the first several meetings I attended, I simply sat back, listened, and observed, but I gradually grew more involved as the conference began to take shape. We were all disappointed when it became obvious that the conference would have to be virtual rather than in person this year due to the COVID-19 pandemic. However, we were happy that a virtual conference was even an option for us. Georgia held a virtual autism conference in May that we attended and took notes for which established the template of how we wanted to carry out our conference. Then, it was just a matter of not only learning how to use the Zoom virtual webinar platform. We had to learn it well enough not just to use it ourselves, but to teach our speakers, a few of whom were technology-averse, how to use this new technology.

There were many bumps in the road along the way. To start off with, the reason why we needed a planning committee in the first place was because Scott Kramer, the former program director of the autism center, had passed away. No single person among the group was in a position to completely step in for Scott by themselves, because Scott essentially put in 40+ hour weeks every week and took the Center on as his full-time job. Consequently, we had to delegate tasks, which was messy at times but ended up working out. The fact this conference ended up being on Zoom played to my strengths because I’m fast at learning new technology and at reading and responding to e-mail, all of which needed to be done for this conference. An in-person conference would require more networking and doing things like reaching out to local vendors to see if they have items available for silent auction, which is an aspect that would take me a little bit more out of my comfort zone. We’ll see if that happens next year! Transitioning from an in-person conference to Zoom required a shift in mindset, but we were thankfully able to keep most of the speakers that had committed to speak at the original conference.

In the meantime though, I probably averaged around 10 hours/week through the last 2 months between committee meetings, speaker planning, and website and e-mail work, and I know quite a few others that put in the same amount of work.  I was truly honored at this conference to receive the Scott Kramer Volunteer of the Year Award. It truly was a team effort. I think the primary thing that motivated me while doing this was knowing that not all areas of the country have anything close to these kind of autism resources, but, thanks to Scott, we do, and it is important. I know how valuable it has been to me. Even though we weren’t able to network in quite the same way at the 2020 Zoom conference as we were in past years, the information offered at this conference was truly invaluable.

As the COVID-19 pandemic stretches on and it becomes apparent that we are going to be social distancing for many months and perhaps years to come, the importance of creating a virtual substitute for everything in our life is being heavily questioned. It is true; not all conferences need to be virtually rescheduled right now. Some just need to be canceled. But life goes on too. Everyone has their “yes, and…” problem; “not only am I dealing with COVID-19, but I’m also dealing with this”. People with autism still need chances to network just like everyone else. I am really grateful we were able to put on a Zoom substitute for our conference that impacted many people over the course of the weekend. A Zoom conference did require a lot of behind-the-scenes work on our part, though it probably still required less work than an in-person conference. Yet, it still was able to have an impact, and perhaps most importantly, it got people to think about something besides COVID-19 for a few hours (though COVID’s impact was briefly discussed in a few of the conversations). Hopefully, whether next year’s conference is in-person or virtual, this first conference without Scott laid the foundation for many great years of conferences to come.

As a footnote to this entry, since it is a life update, I would like to add: In addition to having the conference this past month, I’ve also…found an apartment and I plan to move Saturday! I look forward to discussing that more in upcoming posts. My sister and I were originally supposed to live in our current place until September. However, circumstances changed. The apartment complex we are living in is not renewing anybody’s leases because they are doing renovations to the property. This would be alright, except that they have started doing these renovations to the property even before people have moved out. We have had a construction crew right outside our house every Monday-Friday 8-5 since June 8, doing things like tearing siding off the house and hammering in new siding, and it has been incredibly loud and distracting, especially for someone who is working from home. I will be quite happy to get out of here and into new surroundings soon.


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How the “culture of niceness” is not so nice for people with autism

I recently finished the book Waking Up White: And Finding Myself in the Story of Race by Debby Irving. Irving writes about her own experiences growing up in white culture and then learning about racism as an adult, learning which began at one college class she took. One of the primary purposes of Irving’s book is to illustrate the ways in which white culture is so fundamentally different from black culture that many white people are racist without realizing it. There is racism built into the way houses and schools are laid out in every town, and even racism in the different ways that white people and people of color interact with one another. As someone who grew up in a very white upbringing, I found this book quite helpful, as my upbringing was quite similar to Debby’s, and this showed me some of the injustices and difficulties that people of color face every day that I had no idea about. In this time where we are trying harder than ever to fight racism, the first step is for white people simply to understand what people of color are going through, and this book is a good foundational work to do that.

But I’m writing a blog entry today because one concept Irving introduces in this book stood out as something that could be helpful to people in the autism world as well: the concept of the white “culture of niceness”. Irving discusses how when she grew up, one struggle she faced was being forced to go to her room when she was angry or sad rather than being able to discuss the confrontation, even into her teen years. She says, “My parents didn’t silence me because they didn’t care about my ideas. They silenced me because their own childhood socializations engrained in them a subconscious habit of steering away from conflict and authenticity and toward the more socially accepted culture of niceness.” The “culture of niceness” is the culture where we are expected to always answer “fine” when asked “how are you?” even when our body language definitively suggests we are not “fine”. The “culture of niceness” is the culture where the weather is a more common conversation topic than personal lives, even when talking with people we hold closely. And, as I didn’t entirely realize until reading this book, the “culture of niceness” is largely a white phenomenon. Irving details how she went to a predominantly black conference about racism and learned that people of color were often not shy about discussing topics such as job uncertainty and problems with raising their children into casual conversation. It was part of their culture in a way that it just isn’t part of white culture, especially European white culture.

I’ll cut to the chase here: the “culture of niceness” can also be devastating to people with autism. This is the part we don’t get. We don’t understand why masking our emotions has become thoroughly normalized. And in a sense, that is what this is: another form of masking. Just as we learn to mask our “stimming” repetitive hand and leg movements because they distract people, now we must learn to distract being genuine because it distracts other people too. In a sense, the “culture of niceness” makes it harder for me to evaluate the strength of my relationships too. How can I know if I’m close friends with someone if all we ever talk about is the weather? When do I know when it is the appropriate time to start talking with someone about deeper subjects? There are some subjects that are just never OK to talk about because they are conversationally taboo, and other subjects that are OK to talk about only if you’ve known someone for a while. How do you separate all of that in your head? A lot of that is purely instinctual knowledge, a gap that people with autism struggle to fill.

As Irving points out, “Whom exactly does the culture of niceness serve? I suppose it serves the people for whom life is going well, the people in power. But where does this leave less empowered individuals and populations with legitimate complaints?” Of course, Irving is referring to the population of people with color here. But it doesn’t do people with autism any favors, either. To be able to understand the world and communicate on the same level, we need to be able to talk directly about our issues and not just talk about the weather. That is why I tell people over and over, “If I am doing something that annoys you, it is OK to tell me.” I don’t mind having the heavy conversations, because I need those heavy conversations more than most to work towards being a good person that has healthy relationships with people. I realize there is a time and place for heavy conversations, and there is a time when certain things can become too much. But teaching people to not express their emotions at all when growing up, as the writer’s parents did, is just unhealthy. Our first step towards understanding each other is to allow ourselves to truly know one another, and we can only do that when we go beyond the surface level in our conversations. So, the next time someone indicates that they want to talk about something deeper than what they did this past weekend, be willing to open your heart to them. While the culture of niceness can be a buffer that makes it easier to greet acquaintances for the first time, it can also be a crutch that stifles many budding relationships before they ever get started.

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Elon experiences: Ancient camcorders, college radio stations, and road trips

This is the latest entry in my series of biographical entries. Here, I talk about a few different experiences I had while at college at Elon.

Now that the hurdle of my social difficulties in the freshman year of college was behind me, it was time to start focusing on what I actually wanted to do with my life. One thing college did, repeatedly, was take me out of my comfort zone. In this piece I will talk about three experiences in particular that caused me to have to come to terms with my autistic identity and do something new.

Digital Media Convergence

I didn’t really know what I wanted to do with my life when I went to Elon, but I had settled on journalism. I had excelled in my journalism class in high school, my journalism teacher wrote me a glowing letter of recommendation that helped me get into college in the first place, and it just seemed like something I wanted to do. During my freshman year, I mostly focused on general ed, only taking two journalism classes, both of which were enjoyable, especially since one of them focused on writing. In my fall semester sophomore year, however, I hit a significant hurdle when I had to take digital media convergence, a class that was required in order for me to take many upper-level classes in the major. It was a class that focused specifically on shooting videos with a camera and then recording and editing them. I met my professor before the semester even started, to discuss my disability (something which I was now more comfortable with) and acknowledge that I might have difficulties. We discussed some possible plans for modifying assignments, including partnering up with a friend.

The hardest part of class for me was actually in the first few weeks, where we were expected to manually operate a tripod on our own outside of class with only one class period’s worth of practice time. I knew this wasn’t going to work well for me, so I ended up proactively e-mailing the professor and we made a modified version of the assignment.

My friend Matt was thankfully in the same section as me, and he was willing to supervise my video shooting to make sure that I did it successfully without breaking any equipment. We also were required to show our videos in class in front of everyone, an awkward experience because I realized the quality of my video was inferior to most of what my other classmates were putting out even though I knew the design principles I should be using, but I went through with it anyway. The story I told in my 3-minute video based upon a dream I had sometime in sophomore year. I was staying at a rundown hotel with some friends while on a road trip from Texas to Colorado, and we were greeted by some strange men who agreed to let us stay at the hotel for a reduced rate if we found 4 decks of playing cars and helped stack them in order by suit (a very autistic story). It took us forever to find the cards, and apparently it took long for the men who ended up pointing guns at our heads just as we were finishing! The story certainly had drama, intrigue, and potential for special effects to be added, so it was good enough for me. Once we got into editing with Final Cut Pro, things were at least confined to the computer, but still difficult for me as my lack of spatial reasoning sometimes caused me to make incorrect editing decisions. I had no perspective of what a good “shot” was, and sometimes I would awkwardly cut my friend’s head out of a shot and not realize it, among other issues. Despite all this, however, I persevered and ended up with a B+ in the class. I have never been the type to back out of something once I start it.

Despite this, however, when I looked ahead in the course catalog, I realized that there were more required classes that often had video components that would be even more difficult than this one was. I also took an English class in that same semester that I really enjoyed. While I was skeptical that an English major would be able to get me a job, I realized that writing and editing were really what I enjoyed doing, more than actually reporting news and more than shooting video. Thus, even though I made it through the entire class, I changed my major to avoid taking any further similar classes. I did end up minoring in journalism, since I had already taken 3 classes and only needed to take 3 more in my remaining time at Elon to complete the minor, but I purposely avoided classes that I knew had intensive video production, largely because I had enough challenges going on in my day-to-day social life that I avoided challenges where possible in my academic life.

College Radio Station

One activity I did that met with considerably more success was working for the college radio station. I started doing this in freshman year, when my friend Paul who was also really interested in music got involved. However, I decided to host a show by myself. At the time, the college radio station at Elon was a hybrid between an automated computer system and CDs. Applying for the radio station was not a difficult process, which I was thankful for. There were no interviews required; we simply had to complete a day of training before we were thrown on air. We were required to burn CDs of our shows and give them to a staff member to review, so any problems could be addressed after we had already started recording shows, and not before. This gave us the opportunity to learn on the job and make our own mistakes, something important but also stressful at first. Like all freshmen, I started off playing a “format” show, where we were primarily obligated to play the preferred format of the show, alternative rock. However, we were allowed to play 4 songs an hour from our own collection, as long as we didn’t stray too far off the beaten path of the station’s format. I enjoyed this opportunity to share my music with the world very much, even though I was never sure how many people were listening at any given time.  Artists I remember playing include System of a Down, Muse, Porcupine Tree, and naturally a show where all 8 of my personal songs were by Pearl Jam, my favorite band at the time. The gig also introduced me to a lot of good new music.

The challenge, however, was changing CDs out, keeping a log, and maintaining entertaining “talking” breaks where I introduced the songs. It was always a balancing act where I was barely keeping up, especially at first. The studio had a 3 CD changer, so I was only able to plan ahead 3 songs at a time. I eventually started planning in advance, burning all of my 8 songs from my personal library onto a CD each week and bringing that CD into the studio, to decrease the number of times I would have to change CDs. My old CD collection has survived all of my moves, and I continue to periodically discover these radio station CDs to this day.  I do think, however, that it made my poor executive functioning skills, better, because suddenly I had to concentrate on several things at one time: making sure the song playing right now was playing correctly, making sure I had the CDs I wanted to play next lined up and ready to go, making sure I had the ads lined up and ready to go, and making sure I talked at the right time and in the proper fashion, turning the mics up to the proper volume. While I dreaded this process at first, it was something I grew to love by sophomore year, and it was ultimately a staple of my life during my first three years at Elon.

Highway 64

A third experience I had in college was when I got to spend a weekend traveling highway 64 for travel writing class. We split up into groups of 2-3 for this assignment, and whoever grouped up with me would have the misfortune of having to do all the driving because I couldn’t, but thankfully my friend Dan was up to the task. We left on a Friday evening and didn’t get back until Sunday afternoon, staying overnight at a relative of Dan’s for the two nights. This was truly my first experience of western North Carolina culture or really any culture at all. We went out to eat at a famous hot dog place in Statesville. There, we saw a sign for a lawnmower racing tournament, but unfortunately the tournament was not occurring the same weekend we were there. It was also my first experience traveling down a rural highway. While I spent much of high school in the car traveling between Connecticut and North Carolina, we traveled mostly down I-95, getting used to intense city driving. Highway 64 was something else entirely. The highway seemed to veer left and right at will. There were times when signs disappeared altogether for 10 miles, and Dan and I became suddenly certain that we were on the wrong road, only to then have signs re-emerge. There were times when we got stuck behind a slow car traveling 30 mph for 20 minutes, and there was absolutely nothing we could do about it, which was very unlike I-95 or fast-paced, Connecticut driving. We also traveled in fall 2008 right before the election, and it was interesting to notice the number of McCain/Palin signs sharply increase as we traveled westward in comparison to the number of Obama signs.

Visiting the town of Bat Cave was also an interesting experience. It has a gift shop full of bat memorabilia that we visited where we talked to locals around the town. However, getting in and out of Bat Cave was an even bigger adventure. When we left the gift shop, we were oblivious to the fact that the proper turn for Highway 64 was ¼ mile before our stop. We proceeded for 20 miles along the windiest roads imaginable and eventually reached Asheville before determining that we missed a turn. Unhappily, we turned around and traveled back along the same windy roads. However, Dan spotted an oddity – a road diverging off the highway that seemed to travel straight uphill. He decided to turn up it to see where it led. We got to the top only to discover that it led nowhere – and, in fact, the only way down it was to back all the way up in reverse. Over the next five minutes, I put my life in Dan’s hands as we slowly backed up down the entire length of the huge hill, laughing the whole time. It was an experience I’ll never forget, as I’d never seen a road like that before.

To this day, I still have a travel bug, and I blame this trip for starting it. It was the first chance I’d really gotten to explore the culture of a new place by myself, and I greatly enjoyed the experience. Even though I am still not able to drive, I discovered later on that, thanks to buses and Uber rides, I still have the ability to do my own exploration.


Overall, these three experiences are just three of many examples of how I had growing experiences at Elon. In the case of the digital media convergence project, I took a class that required a skillset which happened to include areas where I knew I was lacking due to my autism, but I managed to overcome those flaws, working around them as needed, to complete the class and finish my own video, something I’d never dreamed of doing before. In the case of the college radio station, I combined something I loved (music) with areas outside of my comfort zone (talking to people live on air and juggling many tasks at once) to develop another task I enjoyed. Finally, in the case of the highway 64 project, I took a trip with a new friend for an entire weekend and learned more about Western North Carolinian culture. While I discussed in previous chapters how college, especially freshman year, was especially hard for me, it also provided me many fun growing experiences. Sometimes, all a person who has stayed in the comfort of doing the same things for their whole lives with their family needs to grow is new adventures and experiences, and Elon provided me with that.

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Life update: Getting used to “staying at home” as a way of life

So it has been a long time, almost three full months in fact, since I wrote a blog entry that was set in the present day. I feel like most people’s lives have not changed very much in the last three months, other than losing jobs and events being canceled. Nothing new is happening. I am lucky to still have my job and still be involved in the autism center which is now having its major July conference online. I’ve also been privileged enough to have some extra free time, which I’ve taken advantage of by doing some writing and reading that I wouldn’t have otherwise been able to do. I want to be a better person when people do start seeing each other again, and I think the best way for me to go about that is to educate myself. I did manage to take a quick trip to North Carolina a couple weeks ago, and it was great to see family and a couple friends. It was also great to just be in a different space for a few days. I would encourage people that have an opportunity to be in a different space for a few days to make that happen this summer. It is important for mental health.

What I’m about to write about below is something that is petty and insignificant compared to the struggles we have seen all over the news in the last couple months. I haven’t lost my job or any family members or friends due to the coronavirus. And I’m lucky that when I go out in public, I don’t have to deal with police officers that always seem to be working against me. I have not seen the ideas I’m going to discuss today written about, however, and I want to give them a voice.

My question today is: How do you deal with it when a “two week” shutdown for the pandemic turns into months and maybe years? I think we all knew when this started that it probably wasn’t going to be two weeks. But, over three full months into it now, the way everyone is dealing with this reminds me of a conversation I had with a new friend once. At first, I was going to talk to this friend one-on-one for only 5-10 minutes while a mutual friend of ours took care of some business before socializing with us. But that 5-10 minutes soon turned into 2 hours. I felt like I was improvising the entire conversation, because you mentally prepare for a 5-10 minute conversation and a 2-hour conversation differently. I kept generating conversation topics based on the assumption that the conversation would end soon, and it never did. At some point, I had to make the transition, however, to longer-term conversation topics. I did gain a great friend out of this conversation, but it was quite an intense, unpredictable start. And that is what we are dealing with right now as a country: A 5-10 minute conversation that has been unexpectedly stretched to hours long.

At first, the majority of people that were able to sheltered in place. No one went out to interact with anyone else publicly, and Zoom business skyrocketed as people became accustomed to that as their sole source of communication. But then, as we realized that we were in for the long haul, slow, subtle changes started to happen. The thing is, no one wanted to admit they were making them. We still shared those 10 “stay at home” posts per day on social media, but friend meetups started to happen. Some of them were outside, using social distancing and wearing masks, and some weren’t. But regardless of the circumstances, no one wanted to admit they were doing anything.

The thing is this can be damaging in the long-term. I appreciated the inclusiveness that most of us in the world felt at home during this time. We’re all in this together, so everyone, stay at home, call your neighbors to see if they need anything, and join in this nice, inclusive Zoom call. But slowly, our old selves have started to creep up again. I want to hang out with John, but I don’t want to hang out with Tommy, so I’ll just tell Tommy that I’m not hanging out with anyone at all because of the coronavirus. Oops, John posted a picture on social media. Guess Tommy knows now. We’ve started using the virus as a way to be exclusionary in the ways we were before it started. And while sometimes even I will admit being exclusionary is necessary, I am having a difficult time right now. As it becomes apparent that we’re not getting out of this mess until there is a vaccine which could be years and years away, it becomes harder to deal with. It is incredibly hard to make new friends or meet new people right now. No groups are meeting in person, and many people are still putting up the public façade that they are doing nothing due to coronavirus. If I had known in January that the friends I had on March 15, 2020 were the only friends I was going to have for the next year or two, and that the life decisions I made up to that point were going to determine what my life was like for the next year or two, perhaps I would have acted differently then. But none of us knew that.

I feel lucky because there are still some people I have gotten to see in person, and yet even despite that I feel lonely. I can’t imagine how frustrated people on the margins who truly have no outside contact feel, or worse yet, how people stuck in abusive relationships or home situations feel. The virus is going to continue for a long time, and the item of foremost importance is that we all be safe. But as people have begun to make adaptations to have some minimal social interaction during this time, it is important that we keep in mind the people for which outside social interaction is not an option, which includes many autistic people. I wish there were an easy solution and an easy way to start groups and encourage new friends to be made during this time while still protecting everyone’s safety, but I don’t know what that solution is. Perhaps as this 2-hour pandemic “conversation” we’re having stretches into its third and fourth hour, we will figure that out. I am highly intrigued to see what our next phase of pandemic social interaction will look like.


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Reflections on winning the 2000 Connecticut state spelling bee in 6th grade

Author’s note: During this time of pandemic when most competitions, including spelling bees, have shut down, it is fun to look back on my old 6th grade memory of winning the Connecticut state spelling bee. I hope you enjoy this trip down memory lane. I missed the Spelling Bee’s annual appearance on ESPN on the Thursday after Memorial Day this year. I especially feel for the students who studied hard and may never get to experience this sort of outcome in the near future.

Changing school systems in the middle of the school year, especially when switching between states, can often be jarring. My move to Connecticut in the middle of the 1999-2000 school year was no different. At West Lake Middle School, in North Carolina, where I had started my 6th grade year, I was just another student. While I was smart and I got good grades, my academic ability didn’t really stand out. The school also didn’t really know how to help me compensate for my deficiencies in spatial skills, socialization, and other areas, or at least they didn’t show me that they knew how to do this in the short 5 months I spent there. In Connecticut, that changed. Suddenly I was instantly one of the smartest students in the entire class. And because the school recognized my gifts, they became more invested in helping me overcome my shortcomings.

This was heavily jumpstarted by winning the state spelling bee just four short months after arriving there.

I won my school and city spelling bee, and the week before the state spelling bee, Philip Smith, a writer from the Hartford Courant, had an idea for a story. He sat down with my mother and me at a restaurant and asked me several questions about Asperger’s syndrome and my experiences growing up. The interview was Wednesday, and the spelling bee was the Saturday after. In hindsight, he got lucky that I won, because it enabled him to make the entire thing into a good story.

Discussion of my musical talents was a large part of the story. My mom talked about a time where, after we came home from church, I began to play some of the hymns and music that we had heard that day without any sheet music in front of me. It was then we discovered I had perfect pitch. We also talked about some of the challenges I had, and we especially discussed how those challenges could be difficult from a parenting perspective. For example:

-My need to have dinner at the exact same time (5:30 p.m.) every single day.

-My difficulty putting on my own clothes, even in 6th grade, due to problems with coordination and interpreting spatial relationships.

-My social isolation, which Mark beautifully captured by describing how I was one of the only students not excitedly talking to other spellers while on stage waiting for the bee to begin.

The spelling bee experience itself was a blur then, and even blurrier today. I still watch national spelling bees every year (except for this year, of course, which I missed greatly due to the pandemic), and when I watch them, I root for every speller to get their word correct. When I was at my own spelling bee, I rooted for that as well, but I also realized that in order for me to win and not spend the entire weekend up on stage, other spellers eventually had to get their words wrong. I remember getting antsy because it was getting closer to my daily noon lunchtime and we weren’t done yet, but I knew I still had to keep spelling if I wanted to win, so I promised myself that this rare deviation from my daily schedule would only happen one time. Despite my inner discontent, however, my steady spelling continued. Spelling bees were a little easier in 2000 than in 2020, but I still was able to spell “freckles”, “quotient”, “liquidation”, “croquet”, and “specifications”. I won the bee by spelling “stalagmites” correctly after the 2nd place speller misspelled it.

Our bee was not linked to the national bee in Washington DC, so I did not get the thrill of attending that, but I did come painfully close in 8th grade, finishing 3rd place in a bee where the top two finishers did get the honor of advancing to the DC stage. That trip would have probably been a lot for me to deal with at the time, anyway, so it is just as well that I didn’t end up going.

By the time I graduated high school, I became aware of a “spelling bee effect” that followed me throughout the rest of my time in Connecticut. I noticed that I began to be treated like royalty at school by the teachers and even by some students after winning the spelling bee, and that effect never really faded even as I progressed through the rest of middle and high school. Teachers were keenly aware of my gifts because I had been featured in a front-page story in the Hartford newspaper, and that made them more inclined to help me. Students became more aware I was smart and that I could help them with their work, and in exchange for that help, they were nice to me. I made friends by gladly helping people with math and English homework especially. I was a people-pleaser and it didn’t take me that much time, so it was something I was happy to do. But notably, most of those friendships faded immediately after graduating high school.

I lacked the understanding to know that I was not building friendships in a normal way, and as a result I thought I had more social competence than I actually did. This caught up with me entering college. It also caught up with me because at times I would make a social gaffe, which ran the gamut from wearing my clothes inside-out to saying something slightly inappropriate, and it would be laughed off and sometimes ignored completely. My best guess is that teachers and other students realized that I had a lot of intelligence and gifts to offer, and they just didn’t want to stunt that.

Despite this, winning the spelling bee was an event that set up my immediate future for success in Connecticut. Six months after moving to Connecticut, I felt more comfortable and at home there than I ever felt during my brief stay in North Carolina. This was mostly due to the support I felt going to school every single day.


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How my love of music helped teach me how to travel

I hope you enjoy my latest biographical entry. This entry is twice as long as normal but that is because it features two topics, traveling and my love of concerts, that are very much intertwined for me.

At around 11:00 on a mid-January Friday morning, I looked out the window, noticed snow beginning to fall, and sighed as I knew my plans were about to be upended for the day.

I know snow should be expected in mid-January, but really, this was North Carolina. Snow only falls one or two days a year there. Why, on the one day that I had plans that snow could affect, did it have to choose THEN to fall?

My sister was going to take me later that night to see a band called Umphrey’s McGee live in concert. I had been listening to the band religiously for a whole year, and was really excited I was finally going to see them.

The concert was only 30 minutes away in Raleigh, and on an ordinary day, it would have been an easy drive. But this was not an ordinary day.

4 hours later, I was sure I was going to wind up not being able to go when I finally found a friend at the last second that was willing to take me. It was a treacherous trip, as ice had fallen along with the snow. But an hour of tough traffic later, we made it to the event.

I had the time of my life, and never looked back.

Since January 25, 213 (which is a show I would gladly recommend you listen to if you are lucky enough to stumble upon a recording of it), I have seen Umphrey’s McGee 24 times. People look at me like I’m crazy when I mention seeing any band that many times. But every Umphrey’s McGee show is different. They have over 300 different songs that they regularly play, and play for 2 ½ hours-3 hours each night, of which anywhere from 30 minutes-an hour is completely new improvisation that varies with every show. Thus, there is always something new to see.

That night, I also met a friend named Nathan who has accompanied me on many shows since. I am part of an Umphrey’s McGee message board, and have met enough members in person that I can comfortably go to any Umphrey’s McGee show that takes place in the Southeast and be able to greet at least 5 people. I have seen them everywhere from Richmond to Nashville to Washington DC to Asheville.

And the crazy thing is, I’ve done this all without being able to drive. So how have I managed it?

Learning To Get Around Creatively

Not being able to drive can really be a drag sometimes.

It is an issue that many autistic people face. For me, it’s hand-eye coordination combined with poor sense of direction and poor reaction time. I can barely operate a shopping cart around a grocery store without running into people, so I’m probably not a good candidate to operate a $20,000 piece of machinery.

For the first 22 years of my life, this was honestly fine. My parents drove me everywhere in high school, and at college in Elon I could walk just about anywhere, with my parents coming to take me to the occasional off-campus grocery store trip. But after I moved back home after graduating college, this suddenly became a very real problem.

While I could use our town’s (thankfully good) bus infrastructure to get around town to my graduate school classes and functions, having a social life was tougher. And as we’ve all learned during this pandemic, having a life that is all work and no play really gets to be a drag after a while.

I needed rides to get to and from church, to get to and from the grocery store, and to get to and from concerts that I increasingly wanted to attend as my interest in music grew. Then one time, I wanted to attend a concert that I would not be able to get a ride to, and it was suggested I take a Greyhound bus. It actually seemed like a perfectly good idea, and it pained me that I had not considered it sooner. The concert was in Charlotte, and I lived in Durham, a scant 2 1/2 hours away. I could take a cab, stay overnight in a hotel after the conference, and then take a bus back the next day.

The first time I took a bus, I was incredibly nervous. I remember standing in line with my luggage, expecting to be scanned lie I was in the airport, and pleasantly surprised and a bit disarmed when they just let me right on the bus. I remember being confused when we stopped in Winston-Salem, about halfway between the two cities, and I was ordered to transfer; I did not understand based on my ticket that this was something I would need to be doing. But when I made it to Charlotte, I felt a new sense of empowerment. Suddenly, all my years of sitting at home feeling left out of society become silly, as I realized I could do this. I was able to go to a concert I wanted to, meet friends, spend a night away from family and generally feel like an adult, something I’d been missing for most of my post-college life.

Uber was another method of transportation I discovered as a result of concerts. For my first concert, I took a cab back to the hotel. However, sometime before my third concert, I heard about Uber and decided that would really be more convenient for me, so I went to the trouble the week of the concert of pre-loading the app and making sure it was ready to go. Uber wasn’t necessarily designed with autistic people in mind, but it sure feels that way for me. I don’t need to know any directions to get where I want to go (which is huge for me!) I just need to be able to type in two addresses. Then I know exactly which car is coming, what the driver looks like, what the license plate number looks like, and how long it will take to get there. It works perfectly with the information I know how to process while omitting the information I don’t know how to process. With knowledge of how this worked in mind, using an Uber to get back from a concert for the first time was a complete breeze. I suddenly realized I could be more mobile in daily life too. I didn’t always need a ride to church or to the store now if Uber was up and running, and it always was. Having the added mobility in my day-to-day life was huge; now I didn’t always have to rely on other people. Uber has become an important part of my life, as I’ve taken more than 1,000 rides since my first one in early 2015 (more on that in a later entry).

Umphrey’s McGee: Becoming A Superfan and Diversifying My Travel Routine at the Same Time

Being able to see Umphrey’s McGee has been a great outlet for me for 7 years now, even though I have spent entirely too much money arranging these trips. I have gained independence learning how to deal with difficult travel situations, including bus delays, finding my way around 30-story hotels, and learning the rules, regulations, and layouts of dozens of new concert venues. And I’ve found that loud concerts with blinding, flashing lights, something which you would think I would hate, have become a paradise of sorts for me. I’ve also spent time with Dan, who’s somehow seen this band 400 times, Nathan, who’s seen them over 150 times, and countless other friends along the way. I’ve learned the difference between Soul Food 1, Soul Food 2, and Soul Food 3 (though I still haven’t seen the 3rd one live), and I have seen everything from country music to techno music to metal music to covers of 9 different Pink Floyd songs (at separate shows).

Umphrey’s McGee aren’t the only band I see live. I’ve also seen a Christian artist Neal Morse several times and many other bands and artists in the Southeast including Dream Theater, Devin Townsend, and several local artists. Concerts are unique for me in that I can develop a subjective opinion of them that is separate from my enjoyment. Unless a concert is literally incredibly bad in every capacity, I will enjoy watching it on some level. I will enjoy seeing the behind-the-scenes work that goes into it and I will enjoy the shared community experience of seeing live music. For Umphrey’s McGee, in particular, even the worst show on a tour is still worth seeing because it offers significant elements of improvisation that are unique to that show and only that show on the tour, even if for whatever reason, on that particular night, they’re not very good ones. That being said, I can be very judgy in-the-moment, as I have experiences where I realize I am seeing “a great show” or “a below average show”.  For example, in 2019, I saw Umphrey’s McGee play two shows at the Ryman Auditorium in Nashville. The first one, I saw by myself, but for the second one, my friend Bryan joined me. I’ve discovered I have this weird ability to judge shows subjectively by how “good” they are yet enjoy even the “worst” show at the same time. The first night (March 29 if you’re out looking for bootlegs) was honestly my favorite show I’ve personally seen out of 24. The next night was my friend’s first show. He was completely blown away, but to me it was average and definitely a step down from the first night. I would have enjoyed the show even by myself, but after the show I had the weird cognitive dissonance of not trying to quash his feelings about the show with saying things like “oh, that was just another night for them; last night was way better”.

A Sense of Purpose

Concerts and traveling, however, have given me part of my sense of purpose, something which I’ve found has become really important in my post-college life. One example of my personal need to have a sense of purpose is how I have felt more comfortable this past year because I finally have steady employment. I finally feel like I’m serving a steady purpose in the world, a purpose that won’t go away anytime soon. The volunteering I am involved with at the autism center also makes me feel purposeful, as I am really helping the autism community grow and changing people’s lives for the better. But the traveling and seeing live music has given me purpose on a different level. I’ve found that without something fun to look forward to, I really struggle in life, and I am less motivated to do the things I have to do like work, look for jobs, and other household tasks. So being able to include these traveling adventures in my otherwise mundane life has helped me feel fulfilled. I floundered for a few years after college because I was so used to trying to make everyone else happy that I didn’t know what I wanted. I also had a low sense of self-worth. Discovering I had an interest in attending these concerts, and by extension discovering I had an interest in traveling, has given me an independent activity that is fulfilling and also has helped me build confidence in all areas of my life.


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