The great mystery of empathy

“You don’t have empathy,” a friend told me during college. “You just don’t get it.”

I wasn’t sure exactly what I was supposed to be getting at the time, but I also knew my friend was wrong. But at the same time, I didn’t know what to tell her.

To me, empathy is still one of the more difficult to understand aspects of autism and life. Many people have heard the stereotype that people with autism don’t have empathy. I think that this is true, in that they don’t experience empathy in the same way neurotypicals experience empathy. And that can be frustrating, because empathy is often a foundational aspect of friendship. It’s definitely one of many obstacles to making friends for the typical person with autism.

But I do think I experience empathy in my own way. It’s rarely a healthy way though. When my friend tells me something bad is going on in their life, I do care about them and I’ve learned how to express those feelings. Fundamentally that is what empathy is: learning to put yourself in somebody else’s shoes. Inside though, I’m conflicted and torn. “How can I possibly be sorry in a true and adequate way for this person’s child being sick when I don’t have kids? That is a feeling I literally can’t relate to, so how do I show this person that I care?” That is where things begin to not compute for me.

There are also times when I get so overwhelmed with empathy for a certain situation I just withdraw. I think funerals are the best example of this. As a churchgoing person, I respect funerals as a celebration of a person’s life through a ceremonial process. But actually going to them is rough for me. Crying loudly and publicly in front of other people does nothing to help my grief, so I don’t understand how it helps other people’s grief. It feels like funerals in a way are designed for people who are grieving to at least feel like they are not grieving alone. But that is something that is just different for me. My black-and-white brain accepts death as a black-and-white thing. It is nice to have comfort from friends during hard times, because losing a person is still a very difficult thing to wrap my brain around. But it’s not something I need to accept their death. One thing I still know was a bit unusual was in 2010 when I accepted my mom’s death very quickly after her cancer diagnosis and spent the last two months of her life detaching from the rest of my family and her because I couldn’t understand their feelings, their anger, or their sadness and that was difficult for me. I know this detachment upset family members at times. It was something, however, that I did not know how to change.

Another way in which I have a difficult time showing empathy is with facial expressions. I literally am incapable of making my face show an expression I am not currently feeling at the time, other than maybe a small smile for pictures. But I certainly can’t make it frown or look upset, and those “pose and make a funny face for the camera” pictures are always lost on me. I feel like sometimes that is another way in which I struggle to relate to others, and that sometimes my face is supposed to be showing something that it just isn’t. It’s another part of language that is foreign to me.

A lot of what I write is designed to help people with autism find their way in the world and relate to people who are different from them. But there are some fundamental blocks that are pretty large, where it feels like we are speaking a different language, and this is one for me. I hope as the number of diagnoses for people with autism continues to increase, we develop an understanding of how to deal with this. Not being able to understand and see people in the way they want to be seen when they are upset is something that is very difficult for me. I love the feeling of friendship, of building something special that makes me feel good based on common interests and feelings, and it is hard when there is a point where that back-and-forth transfer of feelings becomes blocked.

In a sense, empathy is like another language to me. It is kind of like touching is another language, although that is mostly easier for me to deal with.

I don’t understand how to touch people in a way that makes them feel comfortable, or when it’s appropriate to offer a hug or when it’s not, so I just don’t do it. In a sense, COVID has been a relief because I’ve found that, even in 2022, while people have finally begun to touch each other again, they still are touching each other way less than they were before, so it’s one other way communication is easier for me now than it was then. But as you might imagine, it has left me wanting in relationships, because it’s one area that I just choose not to engage in. Empathy is kind of like that, except I can’t choose not to engage in empathy. I just have to accept that my way of feeling empathy is different, be confident that my feelings are valid, and learn how to show those feelings in the correct way, even though it is something that doesn’t come naturally to me and feels like another language. However, making an effort to show empathy is very important because it can be very upsetting when you don’t.

I hope this has helped shine a light on how difficult relating to others truly can be. There are so many things as an autistic person where it’s easy to go, “Wow, I need to learn how to do this, let me just do x, y, and z, and then I can at least do a reasonable job of getting by.” This isn’t really one of those things. The next time you’re wondering why a neurodivergent person in your life isn’t feeling the emotions you want yourself to feel, ask yourself why you’re trying to control their emotions, and remember, some things are just like speaking a different language.

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Introversion and extroversion: Knowing your communication style (part 2)

Introversion and extroversion is a complicated picture that I tried to simplify as much as I could last week. But a comment from a friend inspired me to dive into one question further this week: Are autistic people more likely to be introverted because they are more uncertain of whether or not they will be accepted by others?

My answer to that question is, unfortunately, absolutely yes. I have definitely had a personal journey with this exact phenomenon, and I want to share my story.

I think one of the hardest parts about my time at college in Elon was that it completely shattered my confidence. When I was growing up, I was just used to acting like myself and it being good enough. Occasionally, I would get a minor correction, but life would continue on as normal, and I wouldn’t lose friends because of it. When I was in college, everything changed. I felt like I was on a very short leash at all times. As an example, I went once to a trivia quiz at a local bar with friends, and everything went well and we had a great time. I went a second time to exactly the same bar with mostly exactly the same people, and it went awkwardly on my part, and I wasn’t invited back because it went awkwardly. Experiences like that would cause me to believe that I needed to behave perfectly at all times, or I wouldn’t be invited back to things. As you might imagine, that did me no favors. I started hiding some of the more interesting, quirky parts of my personality in favor of being “boring” enough to be accepted, but it started hiding me in the process, which also makes it more difficult to make friends because people can’t see who you really are in that case. It also caused me to become more drained by social events. Because I believed I wasn’t good enough, I was more introverted. I talked less, and I got drained.

After college, I also had several years of life that just didn’t offer many opportunities to interact with people. I wasn’t really in the mood to take the initiative to create opportunities myself, because I was depressed. So I stayed at home and got really good at entertaining myself and spending hundreds of hours reading books, listening deeply to music, and other solo activity. I got good at chatting with people online because that was the only way I could interact with people. Even though my life was starting to get better by that point, 2020 was easier for me than most people because it was very easy for me to revert to that headspace where talking with other people in-person just wasn’t an option. I knew what to do to entertain myself, I knew how to interact online, and suddenly I had the opportunity to interact via text with people who I knew in-person in hopes that, someday when this pandemic passed, things would be easier. I tried to take advantage of that opportunity the best I could.

Fast-forward to 2022, and my life over the past couple months especially does not seem real. I’ve been given all the opportunities I could dream of now. But I’m beginning to question my own introversion. I know there is a part of me that still needs solo recovery time alone to do my best in life, which is why I wrote about needing that night alone to clean my house last week in the midst of a busy week. That part of me is still an introvert. But, now that I’m not hiding myself anymore, I’m finding that I can be quite chatty in certain situations. I’ve noticed that I’m sometimes the one who is making sure that people who don’t know each other get introduced, and trying to ask questions to get people to share about their lives. I’m no longer afraid. The tricky part is this: there wasn’t one lightbulb moment where I was like “oh, I’m not afraid anymore, I can be me again.” I just had to have enough positive interactions, and dip my toes out a little further into the pool each time, and one day I was ready. I could stop hiding myself. I’m definitely still an introvert, but it’s different now. I also still have my moments where I’m like “one of these days I’m going to just show up and people aren’t going to like me anymore, and I’m not going to be invited back again” but I try not to let it affect me as much now. These moments, though, are why I tell people: please give me (and other autistic people) feedback if something we do is annoying you. We often are oblivious about small issues, and sometimes they can become big issues if not tended to. I definitely prefer taking care of things up front when possible.

I am incredibly empathetic when I notice someone that is only introverted because they are hiding themselves. It is something I notice a lot in people with autism, and it breaks my heart; because we are more likely to not know social norms, we are more likely to have the kind of poor experiences that make this self-hiding necessary. But I know also that, if I give that person enough positive experiences, perhaps they can begin coming out of their shell a little bit. I’m also definitely not here to say that introverts are only introverts because they’ve had negative experiences that make them hide themselves. But, that certainly can be a cause, and if you notice that in a person, sometimes only you yourself giving them a positive experience, which could be as small as a wave and a smile or a 30 second conversation, can get them on the road to increased confidence. But be careful! If it doesn’t work, that also is your cue to move on. Also, start small, which brings us back to my entry from last week a bit. I may not necessarily want to be invited to a loud 4th of July party with fireworks, but sometimes a few minutes of real connection one-on-one or in a small group is all I need.

Humans are inherently social. The world is also a big place, and some of us just talk more than others. Some people are introverted because they need more recharge time, and some people are introverted as a defense mechanism to keep from getting hurt too much. The trick for some people is to keep putting themselves out there, slowly dipping their foot further into the pool each time, and the trick for others is to just watch and listen.

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Introversion and extroversion: Knowing your communication style

Sometimes my blog entry writing process is as simple as going about my week normally, encountering an experience, and thinking “Oh, that’s a hard thing. I should write about that so that people don’t feel alone and have a way to process what they’re going through.” That is what happened this week.

I have not written much about introversion and extroversion in this blog, because as time has gone by, I’ve learned that the majority of autistic adults, though certainly not all, are introverts. That being said, sometimes the issues we may be having on a given day can be attributed more to simple introversion/extroversion than anything else. If I have a couple days where I am doing heavily social things, I need time to recharge. It doesn’t even matter if I was having the time of my life at those social events, as I’m discovering. When I get home I’m still ready to be done, and I will eventually get in a bad mood quickly if I don’t give myself breaks at the appropriate time, even when everything appears to be going great on the surface.

This past week in particular, I’ve discovered that that can be tricky. I’ve been lucky enough to have a number of opportunities to socialize with people I enjoy this week, and they have left me with not as much downtime as usual. It was only on a night when I was finally home alone (ironically only because something I planned to do got canceled) that I realized: Wow, my house is a mess, and my life is kind of a mess too. There are all these tasks I would have ordinarily gotten done by now that I need to get done by next week, and I simply haven’t done them because I’ve been too busy going out enjoying myself. I need to take control of my life, or this situation will get worse. So I ended up spending most of my night cleaning and taking care of random small tasks that needed to get done, and I feel a lot better the next morning as I write this. I am really not sure how people who spend all their time socializing keep a clean house every day. I think part of learning and growing is recognizing that that is not me. If I have a week where I’m out and busy a lot, when I come home I’m going to crash. That’s just how I am. I need to build in time not only for myself to heal, but also for me to be sure I’m taking care of my basic needs. And that’s not a character flaw. That’s just a personality trait I need to be aware of.

I saw a Facebook post this week on the difference between introverted and extroverted personalities. There’s a meme going around there that every introvert out there is just looking for an extrovert to adopt them as their pet, and introverts were talking about how that is actually false. I know that because I’ve learned that. A few years ago, I thought my lack of social skills was something that needed fixing, and I ended up having an extrovert adopt me for quite a few months. While it is always good to improve on socializing, the end result was that it drained me and drained him without me realizing it. I didn’t want to be at events as much as I was going, and they didn’t even want me there all the time, but I thought they did. While I was getting better at socializing on a surface level, my life was also beginning to spin out of control in a bit in the background and, in hindsight, I do think the two things were related.

So if introverts don’t get adopted by extroverts, how do they socialize then? Well, my answer to that is simple: Parallel play, generally with other introverts. Develop a special interest, find someone else with that interest, talk. Then maybe eventually, if the relationship goes deep enough, develop other interests together. Also, for me, one-on-one environments (or even groups of three) are much better than parties or large group settings. They also leave me much less drained when I’m done, which means when I get home I’m more inclined to actually keep my house clean than crash and let the mess pile up another day. Also, don’t be afraid to embrace online chatting. One thing I’ve learned recently is that extroverts tend to actually find online chatting and text messaging to be more draining, as they prefer their interactions to be on the phone or face-to-face. Introverts are the opposite – we much prefer online chatting and texting to phone calls and in person. Online chatting isn’t a weakness, it’s just a reflection of who you are. As long as the other person is on board with it and not giving signs you’re chatting too much, online messages or texts to build a relationship, even a real-life one where you regularly see the person, are completely fine. Just communicate with the other person about their preferences so you aren’t unduly annoying them.

To tie everything back to autism, I think one trap it is easy for autistic adults to fall into is assuming they are just bad at socializing and need to improve. While room for improvement is good, everyone needs to also make sure they are socializing in the way that is best for them. Text and online messages are valid forms of socialization; use them when necessary. Knowing when you need a break so you have enough mental energy to clean your house and maintain control of your life is important as well. Humans are social creatures; none of us really want to be alone, but we all have different ways of finding togetherness with other people. Embrace the styles of communication that work for you, and don’t think of them as flaws. I’m not saying we should avoid going out of our comfort zones altogether. I’ve had some great experiences socializing in larger groups. But be aware of what is working and what isn’t. If you’d rather meet someone for coffee at a quiet coffee shop than drinks at a loud bar, tell them that. If you’d rather watch a movie/TV show and text each other about it than watch it together in person, do that. Find what fits best for you, and don’t be ashamed to take a break when you need it. Your life will be waiting for you when you get back, and you will be a healthier, more balanced person for showing the patience.

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Where do we adults with autism fit in society?

I think if I were a multimillionaire business tycoon with endless drive and initiative, the idea I would spend my money and effort on would be building an apartment complex for neurodivergent people.

Every apartment would be a single. There would be set quiet hours and rules about outdoor noise. And yet, there would be regular social events too, for those that wanted to join them. At those social events, no one would feel judged and everyone would have a place. Also, the social events would avoid sudden loud noises, too.

To be honest, I feel lucky that my current apartment pretty much fits this vision, except it doesn’t have the social events. But I at least feel comfortable here. It is always quiet. It is always well-kept. And yet, in some ways the social events, the one missing piece, are also the most important piece.

I write all of this to make a larger point about the place of autistic adults in society. Which, for a lot of us, is: we don’t have a place. So many autistic adults end up living with their parents through adulthood. For most of them, it is no fault of their own. Some of us, like me, are lucky enough to get out on our own and find a living situation that works for us. But for me, even finding that took a lot of time and effort. As shown in my previous entries, during my adult life I moved from living with my dad to living with my sister to living with my dad again to living alone unsuccessfully for 2 years to living with my brother to living with my sister again to finally living alone in a situation that seems like it will work for me long-term. It was exhausting, draining, and felt hopeless at times. But I still feel lucky that I got here.

After all, where else was I going to end up? I’ve moved so many times that there weren’t going to be a lot of realistic roommate options for me to live with once I finally got to this point. And I need only to look around me to see how difficult being in a relationship or having kids would be. That is simply not something very many people with autism do. A relationship is something I would like to have, though I’m not sure about the kids part. But it’s going to take a very patient, special person.

So for adults like me that are in their 30s, living in this apartment is where we are going to end up. Unfortunately these days, you have to be pretty rich to own a house, and that is something I’m very far off from. From my experience in the autism group, and also in the online game show community, which features a large number of autistic people, I’ve found that many of us are either going through a similar experience as me or they live with their families. This is definite progress from the era where many neurodivergent people were institutionalized. But, as autism diagnosis becomes more popular and these diagnosed kids turn into adults, it’s a question we’re going to have to grapple with: where exactly do people with autism fit in society?

Because the fact is: I’ve reached a point where I’m happier with my life accomplishments than I’ve ever been. We’re finally as far past the pandemic as we’re ever going to be, and my life feels like a good balance of working at a job I feel fulfilled doing writing and editing job descriptions, volunteering at the autism center, and staying socially involved at church. But I still spend an awful lot of time alone, probably more than is healthy. I think one thing COVID may have taught society about isolation is that it does things to the human brain. A lot of kids feel very behind socially after spending all this time alone, and they’re having a hard time reintegrating into society, which is causing a huge burden on the school system right now. I’m not quite at that point, because I was thankfully able to get through school pandemic-free and learn the basics of what I need to be a productive member of society, but it still often feels like something is missing.

Which brings us back to my utopian apartment complex. There are many times I wish a place like that existed for people like me. The more society turns inward, the more we work remotely, and the more we stay in our own social media bubble of hearing people with similar beliefs parrot those beliefs back to us, the more difficult it is to get out of. In my early 20’s, I was definitely not ready for following a more “normal” life path. My mom passed away right after I graduated college, and I spent so much of my college life just trying to avoid getting into trouble that I never really got an opportunity to make deep relationships there. And for people who just spend their life living with their parents into adulthood, that is another way of being trapped. No one is meant to be trapped in their own little bubble. Yes, for many of us with autism, it is the easiest way, the safest way, and the most practical way. But the longer you stay in, the tougher it is to get out.

I usually like to end these blog entries with a nice tidy paragraph that offers solutions, but I don’t really have that today. But what I do have is examples. I see these situations playing out in society over and over again because I work with an autism group. People just do whatever is convenient, and whatever it takes to get by, and they end up staying in that position for years and years until it is hard to get out. Some people may be happy living with their families indefinitely, or living alone indefinitely. But it does take a toll. And, as society continues to turn more inward each year, it is no wonder things seem to be coming apart at the edges with increased shootings and mental illnesses and everything else. My main word of advice today is simply this: when it is possible to do so, go out and see and experience as much of the world as you can.

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Where are you from, Kevin? The places I’ve lived in review (part 2)

Picking back up right where I left off – moving from my dad’s house to my sister’s house in 2010.

Lived in Carrboro, North Carolina with my sister and her family from 2010-2012: I graduated from Elon in May 2010, and came home ready to look for a job and settle in living in the same space for awhile. I didn’t quite know what was next, and I was a little bowled over by that uncertainty. But soon, a different feeling began to take over: dread of what was going on over at the house. I could tell something was very wrong with my mom, but I didn’t know what. In late June, my worst fears were confirmed: my mom’s cancer was back in a big way, and she only had 6-12 months to live. Those 6-12 months ended up barely being 1 ½ months. And after those 1 ½ months were up, it was time to move, immediately, in with my sister, because that was what my mom had asked for before she passed away. So suddenly, in August 2010, I packed up my bags and moved to a new place. It was a terrifying, tough adjustment. My sister was grieving just as much as I was, and I don’t think either of us was quite up for a sudden change in surroundings. But we also wanted to follow my mom’s instructions to the letter, so here we were. On top of this, living with a family full of young children for the first time would have definitely been an adjustment for me at any time, and was even more so right now. These were hard years. But we did the best we could. One of my biggest regrets about this time was I got to live in Carrboro and Chapel Hill as a young 20-something and didn’t take advantage of the social opportunities that provided. But I was simply too tired and shell-shocked.

Lived in Chapel Hill, North Carolina with my sister and her family from 2012-2014: This was largely a continuation of Carrboro, to the point I forget why my sister even had to move. There was one key change though: we moved to Chapel Hill, and not long after I decided to attend grad school at UNC, which I was conveniently right on the bus line for. So Chapel Hill became my identity for the next two years.

Lived in Durham, North Carolina with my father from 2014-2015: Until another change of circumstances happened. My sister’s partner got a promotion that caused her whole family to have to move to Atlanta. Unfortunately, I could not realistically move with them, because I still had one semester to go at UNC. So I needed to find another plan. I couldn’t afford to live by myself yet, so the only logical place for me to go was back to my dad’s in Durham. Thankfully, I only was taking two courses during my final semester at UNC, and both were independent studies, so I designed a schedule with my advisors where I only had to be on campus one day a week, and could do the rest of my work remotely, as I still wasn’t driving yet. The commute was a grind, but I was able to finish my degree. After that, it was time to finish out next steps, and I ended up working at the test scoring job at Measurement, Inc. I saved up what I thought was enough money, and then finally reached the goal of being able to look for and find my own place to live in Durham in 2015.

Living by myself in Durham, 2015-2017: I wasn’t ready to live by myself. This wasn’t something that was immediately apparent. I could keep the bills paid and the lights on, and I knew who to contact in case of an emergency. But I couldn’t keep the house clean adequately, and the quarterly apartment inspections were always a source of panic for me, even though I knew they were mostly inspecting the apartment to make sure nothing dangerous was going on. There was also the matter of my job. I was lucky enough to find what appeared to be a year-round test scoring job literally within a week of moving in. It felt like things were working positively in that direction. However, after moving and starting the job in October, in May my contract abruptly ended due to no fault of my own. We just were not able to get the work done to our client’s satisfaction. This meant I would need another job. I wasn’t ENTIRELY unemployed; I still had solid steady work from January-June. But it would take steady, year-round work to be able to afford to live by myself in that apartment. The next year saw a parade of job applications and interviews, including 4 interviews with the same company, but no new jobs. Eventually, in summer 2017, I just had to give up and realize that this wasn’t working. I would have to move. Thankfully, my brother had offered to take me in if I had ever needed it the year before, so I had an easy and obvious place to go. We made arrangements and I prepared to finally change states again, moving to my brother’s place in Maryland on Labor Day weekend 2017. Essentially, one problem solved the other here. I was not ready to live on my own, and my dad helped me clean up the mess to the point where I even got my security deposit back and would not have to worry about dealing with it again.

Living with my brother in Maryland, 2017-2018: However, then this was the most difficult year of my life. My brother and I just did not have compatible personalities. I felt like I was walking on eggshells all the time. Additionally, despite more than 100 job applications, I still wasn’t able to find any permanent employment in Maryland. Those in-person interviews are really rough for people with autism. It’s a hurdle I still haven’t been able to get past. So, after much thought and consternation, my sister, who now lived in Chattanooga, Tennessee, offered to have me move in with her again. At this point, it really, really felt like I was going around in circles, and I really felt desperate. But I knew I had to get out of Maryland, so out I went.

Living with my sister and her ex in Chattanooga, 2018-2020: This was great, in that I figured out quickly that Chattanooga was where I would want to be for a long time. The goal was always still to be able to move out on my own, and so the frustrating job search continued on, until finally in November 2019, over a year after moving to Chattanooga, I was able to find a remote job that seemed promising and actually offered real, year-round employment, so it would just be a matter of saving up enough money to feel like moving out on my own was a stable option. I made friendships at church and at the autism center that laid the groundwork for what my social life is today. I finally traveled a ton, something I’ve always loved to do. Being close to Nashville and Atlanta, and still relatively close to my dad in North Carolina, was great. I really took advantage. In early 2020, it became obvious that my sister was going to split up with her ex and need to move soon. Which led us to…

Living with just my sister in Chattanooga, 2020: My sister and I had a 5-month interlude where we lived together, just the two of us, in Chattanooga. I moved with her because I knew I wasn’t quite ready to move by myself yet  and I had the opportunity to sign a 6-month lease to buy myself just a little bit more time without needing to commit to a full year. Unfortunately, my move-in date was March 15, 2020. And we all know what happened after that. The pandemic sure made things challenging. The tornado knocked the power out at my sister’s kids’ house, and they came to live with us for a week, and that was challenging. The apartment complex started knocking down the siding on the front of our house and building new housing, a months-long project that made things very loud from 9 am-6 pm every day. That was perhaps the worst challenge of all. Every time I hear my new apartment manager hammering at something for 10 minutes, I still make plans of what I would do if that just didn’t stop for 4 months. Until finally, due to all the commotion, we were able to get out of my lease early. I only looked at one place, and it was the perfect one, which brings me back to…

Living by myself in Chattanooga, 2020-2023: And so we come full circle. I’m happy to report that those six trying months in 2020 were a prelude to something much better for my sister as well.

Well, that was quite a long story, was it? I’m happy you stuck around for the whole thing. I think all of this proves: life can be really difficult sometimes, both in general and for people with autism. I had so many moves that were just dictated by life circumstances and had to happen immediately, and some of them really stunk. But I stuck with it because I knew what had to happen for me to achieve some stability, and I feel like I’ve finally gotten as close to that as possible You may be stuck in one of those difficult times right now, like I was at my brother’s or with my sister in March 2020, where it feels like it’s always raining, and there is never going to be a sunny day again. Well, it will. The story isn’t over, and the next chapter starts soon.

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Where are you from, Kevin? The places I’ve lived in review (part 1)

It is June 2022 as I write this, and a couple weeks ago, I renewed my lease to stay in my apartment for a third year. Assuming nothing crazy happens that causes me to break my lease, this will be the first time I’ve lived in the same place for three consecutive years since 2004.

When I realized this, I was instantly stunned. Moving is such a stressful thing. Picking up my stuff and moving on to the next place has become something that I’m good at. Objects aren’t permanent; people are. But as I meet more adults my age, I realize that my experience of moving is pretty unique. Staying in the same space year to year is a gift. There have been times that my life has felt unstable enough, it has been difficult for me to even focus on higher-order needs like getting a job or making friends because I’m always concerned about the roof over my head and whether I need to change it. Not having that question anymore has been such a relief. I know I want to stay in Chattanooga, because of my ties to the autism center. And as for my apartment in Red Bank, it’s perfect. It’s near friends and family (within walking distance of a couple), they don’t raise the rent more than 5% (even In 2022 – hallelujah!), and the people who work there generally respond promptly when I need things fixed and are wonderful to work with. It is a true blessing.

 I wanted to take some time today, however, to quickly review each place I have lived in my life. The list is long, so unless I want this entry to turn into novella status I will only be able to write a little bit about each one today (though I may focus in more deeply on a few coming up.) For me, living in so many places has shaped me in much the same way that living in the same town for their entire life might shape somebody else. I leave little bits of my identity stitched into each one, and at times, it has been hard to get the complete picture. But maybe writing about everything together will cause that complete picture to present itself more fully. I hope everyone who is reading this can take away that change is hard, but sometimes surprises wait for us beyond our wildest dreams when we embrace change. Also, I hope people understand that sometimes we just get dealt lots of strange hands in life that cause our goals and accomplishments to change, and that is OK. Sometimes, life just dictates where we need to go next, and we don’t have much of a say in the process.

Born in Torrington, Connecticut, in June 1988

Moved to Massachusetts sometime between 1988-1990: My memories of my early life before age 5 are extremely hazy, but I’ve been told this move happened. Since it pads the “states I have lived in” count, I will include it here.

Lived at 91 Finch Street in Rochester, New York from 1990-1998: This is actually the longest duration I’ve lived anywhere in my life, and where many of my early life memories originally stem from. For most of this time, it was just my mom and me living here by ourselves, though my Aunt Laura and Mom’s long-term boyfriend Mike lived here at various times. I was introduced to the idea of winter as a pretty cruel season, as it started snowing in Rochester sometime around Halloween each year and never really stopped until April, largely due to being so close to Lake Ontario. It was also where the churchgoing part of my identity was formed. My mom did not own a car, so for most of my young life, I remember walking the 10-15 minutes to church every week, both on Sundays and on Tuesday nights so my mom could run her family support group. It didn’t matter how cold it was or how much snow there was on the ground, this was Rochester, so we walked. It taught to me the importance of commitment to things, and I began to see how important faith was in my mom’s life and adopt it to my own.

Lived in Willow Springs, North Carolina from 1998-2000: This was a change. My mom decided to move in with my sister in North Carolina because she wanted to be closer to her family, and she took me with her. I was in 5th grade at the time, and spent all of 5th grade and half of 6th grade in North Carolina. These were somewhat difficult years for me. Suddenly having more than two people around in the house was hard for my autistic self to grasp. My niece lived with us and had friends over all the time, and I began to realize I’d never really bothered to make friends and grew resentful of that. One high point was that I met my 5th grade teacher Ms. Brown, one of my mentors and role models in my early years who I’ve been grateful to reconnect with in adulthood.

Lived in Milford, Connecticut, at 7 Lee Court, from 2000-2004: This was the most recent time I have lived anywhere longer than 3 years. My mom’s high school sweetheart, Terry, who I know as my dad now, sent her a card for her birthday in 1999 and it caused them to reconnect. Not long after, he moved to North Carolina to join us. Quickly though, his dad became ill and it became necessary for him to move back to take care of him. So we all moved back. I remember being very conflicted about this move at the time. We had JUST moved, and now we had to move to a strange place again, and when we got there the house was a mess and we had to spend time cleaning it up, and lots of hard things. But I tried to be patient, and in the end, my time in Connecticut was a blessing. I got to grow up in an excellent school system, that recognized that I needed to be challenged academically while also working one-on-one in a special education classroom to develop my social and fine motor skills. I got to grow up and be confirmed in an excellent Methodist church and shape my religious identity even more. And I got to grow up on the beach! In the end, all the hard moments were worth it…

Lived in Milford, Connecticut, at 100 Plains Road, from 2004-2006: …and this was one of my hard moments. After my dad’s father passed away, his sister wanted to sell the house, even though we were still living in it, and this caused us to need to move again. This was definitely tough, and the first time I realized how cruel families can be. Thankfully, the rest of my excellent Connecticut upbringing was unaffected by this move.

Lived in Durham, North Carolina and Elon, North Carolina from 2006-2010: While I technically maintained the same Durham address for 4 years, I don’t count it because this was also the time I attended Elon, and so I had to move in and out of Elon twice per year and never really stayed in the same place longer than a few months at a time. This was a definite growing period in my life. Essentially, my parents were waiting for me to graduate to high school to move to North Carolina, and I’m thankful they did, so I could have that entire same experience with the same great group of colleagues in the same great school system. But it turned out there was no time to adjust at all. I graduated on a Thursday, and the next Wednesday, I was riding shotgun alongside my dad in the front seat of his truck, with my dad’s son driving a U-Haul truck in front of us. I was given plenty of warning that the transition would happen this quickly, but it was still hard. I remember going to a graduation party on that last weekend and saying some hard goodbyes. I remember planning my entire college search around colleges in North Carolina, because I knew that while I wanted to live on campus if possible, I also would need to have my parents close by. This was challenging to do from Connecticut, but we figured it out. Elon appeared on our radar because of its excellent journalism program, small campus size, and small class sizes. I’ve written a lot about Elon, so I don’t want to rehash it all here, but while I did graduate successfully, it ended up becoming more of a struggle than any of us could have ever dreamed. I remember getting my first real glimpses of what unfiltered adult life was like in North Carolina during this time. And I am grateful for them. Because adulthood would sure end up hitting me fast and furious with the next move.

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The autistic struggle: Why showing emotion can sometimes be difficult

(Trigger warning: I do talk pretty plainly about my reaction to my mom’s death in this entry, so for people suffering from loss, it could be a difficult read.)

I’ve never been great about showing emotion in public.

Part of that may be because I’m a guy, and the traditional male expectation is that boys don’t cry. Thankfully, that’s not an expectation that was particularly welded into me growing up,  but it still is one I feel the need to follow. However, I think part of it may be due to my autism, and that is what I am here to talk about today.

Despite my lack of public emotion, I show emotion in private all the time. Like most people who are in their 30’s, I’ve certainly had plenty of things to cry about before in my life. My mom passing away is the biggest one that comes to mind. But then there’s other more day-to-day ones like the stress of having to move out in the middle of the year during college, the stress of living in Maryland, and sometimes just hitting a breaking point when a bunch of small things stack up during the day.

Recently, I visited my dad, we discussed this, and he pointed out that I never cried in front of him during the month surrounding my mom’s death. I told him that that was interesting, because I certainly cried other times that month, but maybe I just felt I had to hold it together for the family. We found out about my mom’s death shortly before a scheduled trip to Connecticut that I still ended up taking, just with my aunt instead of my mom, and I cried there. At the time, we were told my mom had 6 to 12 months to live (it ended up being not even 2), but there I came to terms with it the first time, and how hard the next year might be, but how important it was that we make it as good a year for my mom as possible. Then, when the hell of that hot North Carolina summer filled with hospital rooms and hospice rooms was finally over, I cried in front of my best friend privately away from my family the day before the funeral as I prepared to pay my respects.

But why didn’t I cry in front of my family? Certainly, many of them cried in front of me. It was a shocking, difficult time for all of us. My mom was the lynchpin that held our family together, and many of us were not only sad about her loss, we were also sad and stressed about an uncertain future. But the more I think about it, the more I realize that I didn’t cry because that’s just the way it’s always been. As an autistic adult, I have just always felt the pressure and expectation to hold everything together, and I did here, too.

One trait of being autistic for me, I’ve found, is that, to put it bluntly, I’m always fighting the urge to sit in a dark room by myself and just dissociate from the world for two weeks. I’m motivated, of course, to do a job that uses my skill set and has a positive impact on society. I’m motivated to have friends, because I’ve met some really cool people in my life and being lonely is just as difficult for me as it is for anyone else. I’m motivated to volunteer for the autism center because I realize it’s something that helps a lot of people, even though it is something that often pushes me out of my comfort zone to the point of exhaustion. (Sitting at an exhibitor table at a crowded conference and doing a television interview are two things from the past month alone that felt crazy, and required plenty of recovery time, but are also things I did because I felt they were important and I COULD do them.) But, even beyond all of these motivations, I’m constantly in search of alone time with minimal stimulation. That is just the way my brain works.

This urge to dissociate is an incredibly difficult one to fight. And it doesn’t mean I’m sick, and it doesn’t mean there’s anything wrong with me, it just means I have autism and this is the way my brain is made. I saw a Facebook post from a friend on the autism group recently that resonated incredibly with me. It said, paraphrased, “Most people recognize when they are hitting the point of burning out, and they take steps to stop it. But, for autistic people, it is different. We are always hitting the point of burnout, but we push on anyway, because that is what society expects of us. And sometimes we end up pushing so far past our breaking point that that is when the burnouts occur. I don’t just ‘burn out’ when I run out of energy, I go until the gas tank has negative space” This is exactly it. My brain is constantly telling me to chill out and stop doing so much. Even on days where I am not doing very much at all, it still always finds the one little thing I am doing, and stresses about it. I genuinely want to fight it, and I genuinely do feel motivated to do all the things I am doing in my life, but that doesn’t mean it isn’t a fight. And working on a committee where most people are autistic is also interesting, because we ALL hit these points of burnout, but the hope is that we can hit them at different times and the work gets done. And we do that, and for the most part we completely understand why it has to be that way.

I will close with going back to the weeks surrounding my mom’s death. One of the reasons my mom’s death was so hard for me was that she was one of the only non-autistic people I met that truly understood this about me. Just because I graduated from college two months before she passed away didn’t mean I was “normal.” I still had to fight every step of the way to get that college degree; I just did it anyway because my motivation was that strong. But my mom also protected me and sheltered me from a lot of the things that would have been difficult for me in life. Since she died, I have had to face those things on my own, and there are times when they’ve really done a number on me. There are times I’ve gotten frustrated with myself, and felt like I was spinning my wheels and not going anywhere in life, but I need to remind myself that I’ve been fighting an invisible beast every step of the way. And that it is OKAY to struggle, and I’m doing the best I can. We all are doing the best we can, and everyone has their own demons. Displaying emotion in public is still not something I do well, though. But maybe as I become more comfortable with this aspect of my character, that is the next step.

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What does the autistic community need?

What does the autistic community need?

After more than two years working behind the scenes as part of an autism support group, it is important to ask that question. Sometimes I get so caught up in the planning and the making sure that person has the Zoom link this week and that that speaker has their PowerPoint ready for the conference that I lose sight of the bigger picture. But it is an important question.

I can’t claim to speak for everyone in the autistic community, of course. But after being lucky enough to meet dozens of people from the Chattanooga autistic community in person over the past few years, I feel my finger is more on the pulse than most.

We are all incredibly lucky to live in Chattanooga. The Chattanooga area has more resources for people with autism than anywhere I know. It has more resources for people with disabilities in general than most places I’ve known. And I’ve looked feverishly in the Washington DC area and in the North Carolina Triangle area, and even have a general awareness of what is available in the Atlanta area (outside of our group). We just have more than some of these huge cities. It is a great luxury.

But in that luxury comes responsibility. We need to make sure that we are meeting people where they are at and delivering what they want.

So what do they want? For me, what I wanted (and got) when I moved here was a support system. I started attending the weekly Tuesday support group meetings right away. I made friends and connections. I was quiet the first few meetings and listened as people shared stories that were quite similar to mine. Even that was helpful; just feeling that I had something in common with other people and was not alone. Then I began to share my own story. I ended up needing significant help with planning my life about a year after beginning to attend the meetings, and was able to get it from the person running the group. I was pointed towards programs like the ECF Choices program that have made it much easier for me to live independently. And most importantly, I felt understood. While some of this was just living in a better living situation, some of this was because I had a chance to go out and make connections on my own that felt natural.

I believe that the most important thing that a lot of people attending the group need is simply the opportunity to listen and be listened to. Even by listening, they feel heard because they hear other people speaking their language and realizing they are similar. And of course, the chance to reach out when they need it is so important. Chattanooga is different from other autism groups I have attended in one key way: It is completely run by autistic people. I attended a group of autistic people in North Carolina that was run by a neurotypical. While she did a good job, that group was clearly run with the focus of “how do I fix the problems that some of these people have?” In our group, we acknowledge that sometimes it is impossible to fix things entirely, so we need to learn how to live with things instead. It’s a completely different mindset.

When Scott Kramer founded GCA several years ago, he started with a weekly once-a-week meeting with light refreshments, water, and a place to chat in the hopes of providing just that. Later on, he added the big conferences that I now spend large portions of each year planning. The conferences are helpful too, in a different sense. As an academic I appreciate the chance to go and hear presentations that are on the cutting edge of autism research, but also presentations that treat us like human beings. There is no talk of cures, just talk of how to recognize and deal with obstacles in our daily lives. And I love that. The conferences also provide a place for many people to go and gain a bunch of information about resources simply by circling the tables around the room.

I’ve also been lucky enough to see people build friendships, including the casual trading of phone numbers after meetings and other avenues. When people have a place to listen and feel listened to and heard, and that need is met, suddenly they can move up on the hierarchy of needs and start building real relationships and bonds with people. And that is something incredible. After two years of regular Zoom meetings, sometimes it feels we are all so comfortable with each other it is difficult to mix in a new person, but it is also something that is substantially worth the effort. Watching people go through the same journey I went through (from barely talking when they first join to forming long-term friendships) is one of the most rewarding parts of this whole experience.

Of course, the majority of my leadership time has been spent on Zoom. I only really started becoming involved with leadership in November 2019, and shortly after that the world locked down and changed forever. A lot of this relationship-building has somehow taken place over Zoom, which is even more impressive. I hope as we move into a more hybrid model of meeting to learn more about what people need from an in-person setting. I never realized what was missing during a lot of my 20s until I found it here: the simple need to be heard.

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Strategies for maintaining healthy boundaries and relationships

So today we’re going to talk about a sore subject for me, and one I’ve never devoted a whole entry to: boundaries. Boundaries are something I find many people with autism struggle with, especially in this 24/7 news and social media instant gratification world. We are used to live up-to-the-minute updates on everything in life. But the reality is that relationships do not work that way. If two people are talking to each other 24/7, either they’re in a particularly torrid love affair or one of them is going to burn out. I used to make many mistakes with boundaries. I still make them now, but I like to think I make less. I’m going to talk in this entry about some potential tips for healthy relationships, and also talk about things that can potentially irritate people and how to avoid them.

First, I’ve noticed my own tendency to get over-invested in my friends as a person with autism, and I’ve known lots of other people with autism to have that tendency as well. It’s just the way our brains are wired to work. We develop a special interest, and instantly we want our entire life to revolve around the special interest. Couple that with the adrenaline rush of developing a friendship which sometimes may be difficult to obtain, and it’s easy for things to get carried away. So we start talking to them all the time. And when they don’t respond, sometimes for even just a few minutes, it feels like our world may end. So maybe we send another text. Or we call them. And now they’re annoyed and things can spiral from there. Worse, now that we know we have one friend, we may try too desperately to keep them, and end up alienating them instead. My suggestion for this is simple: take your usual autistic powers for organization and scheduling and use them. Also, communicate. If you notice a person seems to become more annoyed and withdrawn, ask them how often they would prefer to talk. Then try to plan to fit their needs. Maybe don’t tell them that you’re planning. But for me, I often plan in advance when I’m going to talk to people I care about. “Oh yeah I’ll talk to her this weekend. I’ll catch him this Tuesday after the meeting.” Then I have something to look forward to, I’ve scheduled it and compartmentalized it in my brain which settles my brain down, and I get a better response when I finally do communicate with them. It’s a win win all around. I also try to schedule around when I’m busy with things and when my friends are busy with things. If I’m already doing something that I know will be fun on Friday, but I’m doing nothing on Monday, Monday is maybe a better day to talk to my friend than Friday. Likewise, if my friend is busy Monday and I know that, maybe I should pick another day to text them.

Shifting gears a little bit, one thing that is difficult for me is when people text me or call me to tell me they’ve e-mailed me, especially if the email is only a couple hours old. I get a lot of emails, and sometimes I miss something. If it’s really THAT important, call and leave a voicemail saying why it’s important. THAT will get my attention. Communicate in a way that stands out. But repetitive communication just starts to get to me. If I’m not getting back to you right away and I usually do, maybe I’m just having a bad day, but communicating repetitively isn’t going to make that better. Again, we should use our autistic powers of rule following here. Different people will have different rules, but I’d say everyone should be allowed at least 12 hours at all times before they’re required to respond to communication that isn’t specifically about their job. I would maybe up this number to 24 hours if you aren’t close with them. Keep in mind how urgent the thing you are asking really is when determining this amount of time.

Of course we know some things have different rules, like jobs that want to wait 2-3 weeks for you to follow up with them after an interview and then may not follow up with you at all. This can all be very frustrating and confusing. But one thing I’ve found that can be helpful is setting reminders.  I can send an e-mail to myself in Gmail that is scheduled to arrive next Thursday morning: “call this person today.” “call this person tomorrow.” Or if I’m feeling really advanced, I can even write an e-mail now and schedule it in 12 hours. It gets rid of the anxiety, but it delays the delivery until a more socially acceptable time where the person might be ready for it. It’s tricky, but it’s necessary. I do both of these things in my Gmail account by hitting the arrow to the right of the blue “Send” button. It allows me to schedule anything I need to schedule, including emails to myself. Also, delivery is important. Do not ask “did you get my text?”, because they always did, and that can be accusatory and irritating. Say something that is more neutral and reflective of the situation, like “I’m still planning on going out to eat at this restaurant tonight and I need to know if you want to go.”

I feel incredibly gifted to have the friends I have these days. I went through a period of time in my life during college and during the few years after where I felt lonely and felt like I had only a few friends. It was easy to push too hard, and it resulted in hard conversations and situations and even getting ghosted a couple times. But unless the matter is truly critical, I’ve found allowing space to always be the way to go. You can schedule a time in your head that seems reasonable and calm yourself down and focus on something else. But it’s very important, and I’ve seen too many friendships and relationships get sunk by one person smothering the other.

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Autism and police issues: A panel discussion

I was given the unique opportunity this past Tuesday to participate in a panel discussion with other autistic adults and some police officers going through mental health/CRT training at the Chattanooga Autism Center. This group of seven officers was selected specifically because they were in a program training them to respond to many different types of calls involving possible mental health issues, and I’m glad the autism center took this opportunity. I have written an entry previously about a few questionable encounters I’ve had with police. Thankfully, I’ve had no additional encounters since I wrote that entry in 2019, which is probably largely due to how much we’ve all stayed inside over the past couple years. That being said, now that we are all starting to go out more again, it is more important than ever to reinforce some of these points.

Present at the talk in addition to the seven police officers were two autistic adults, two parents of autistic adults, and one graduate student doing research about this exact topic, along with a moderator. The moderator gave each of us the floor for 10 minutes, where we presented information to the officers and then had the opportunity to have a dialogue about it. One topic that came up was meltdowns. When people with autism of any age are having a meltdown due to overstimulation, they have completely lost control of themselves. Therefore, one point we reinforced to the police officers is that trying to reason with them generally won’t work. However, usually they won’t hurt others in that situation unless provoked. This prompted some interesting discussion, because police officers’ first priority is keeping the community safe, and it is hard to know and decide in split seconds whether a person who is acting out violently is going to lash out at others or not. However, some strategies we talked about included focusing on securing the space rather than securing the person. Also, the more information autistic adults have about the situation, the less likely they are to lash out, so letting them know you called for backup help may be a good thing.

The main focus of my 10 minutes, as you might imagine, is my history of being stopped for questionable things. I discussed the time I was stopped in Chattanooga in 2019 while walking from church to the grocery store, which you can read about more here. The police told me they get these kinds of calls all the time, and they are obligated to investigate them. They realize going into it that someone “walking suspiciously” is very rarely going to be doing anything wrong, but on the off chance they are, it is up to them to keep the community safe. When I brought up that I balked when the officer asked me for my social security number, one of the officers said that that was a common tool that can be used to be helpful to the individual. I told them this may be true, but this also gives you access to my identity and makes it easier to charge me when I know I have done nothing wrong. The prevailing assumption when we are stopped by a police officer is, “I have done something wrong”, and people with autism who both tend to be rule followers and may completely miss that what they’re doing is offending people tend to be especially disturbed by this. However, if the officers give information first about why exactly we are being stopped, we will be less likely to be a problem, and the interaction will go more smoothly.

A few other important miscellaneous topics and tips came up. Stimming and lack of eye contact during a traffic stop does not necessarily mean that an autistic person is showing an intentional lack of respect toward a police officer. An autistic person may not know that rummaging around their bag could put a police officer on edge, so if the police officer communicates that information in as calm a way as possible, it may help. Many autistic people cannot pass the DUI “walk a straight line” test even while sober due to coordination issues, so it is a good idea for police officers to come up with other forms of assessment. Also, one of the adults told an unfortunate tale of being berated by an officer at the scene of a car accident because he wasn’t able to write a statement. The officer thought that, since the adult wasn’t able to write, they shouldn’t be able to drive a car. I’ve talked about this skills gap before in other blog entries, and it can be unsettling; my brother assumed that just because I couldn’t button buttons on a shirt also meant I couldn’t travel safely on my own, and that was not the case. One skill may seem more advanced than the other, but ultimately they are unrelated and a person’s ability to do one does not affect their ability to do others. In this case, the adult was given a driver’s license by the DMV; therefore, we should all assume they can drive. It is important for people everywhere, including police officers, to not be so quick to make these assumptions about unrelated skill sets.

In general, I thought this hour was very good because we actually got a chance to have a dialogue. The police officers communicated with us how their role is to keep the community safe, and they often have to make split-second decisions about potentially dangerous situations that don’t afford them the luxury of being wrong. Meanwhile, the autistic adults and parents of autistic adults in the room were able to tell the officers some things to look for during a stop and some tips to make the stop go more smoothly. Ultimately, this hour was just seven police officers and five autistic adults in one room in one city in the United States. This one hour by itself is not going to cure the systemic ills with the police system. But the more open dialogues we have about these situations, no matter how small they may seem, the better off the community will be as a whole.

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