college, routine, the real world

Safe Foods and Eating Routines

Good morning. It’s Tuesday. I regret to inform you that I have yet to settle into a solid schedule with regard to when I write my blog post for this semester, so I’ve sort of been flying by the seat of my pants ever since I moved back in— i.e. just writing the blog whenever I get the time to do so. As such, this is going up a little later than I would have liked it to, but really, I can’t complain or beat myself up too much, because it’s still Tuesday. Tuesday morning, even. So let’s go ahead and get started, before I delay this any more than I already have.

As I promised you last week, this post is going to be the follow-up in a two-part series about notable changes that I have to adjust to as I enter the new school year. I did a lot of lamenting last week about how I had gotten used to a certain housing situation, and how since my housing has changed slightly, I’m adjusting to a new situation this semester. The overarching theme of this two-part series is, generally, to show you how much it can sometimes take for autism to adjust to even minor changes in predicted routine. In the cases of housing and food, the latter of which is what we’re going to talk about today, I’m adjusting to something new despite having been very used to what I had before. That can be a difficult process, and it’s my goal to show you that through these two posts.

So without further ado: food! I honestly haven’t written about food as much on this blog as there are things to say about it. Food is a huge part of my life, and not just for the obvious reason that you have to eat to life. Meals, particular foods, and eating habits are things that are ingrained extremely deeply into my routine. We talked about this once before, in this post, where I showed you what my food schedule looks like. Today, I want to talk about my diet as it specifically pertains to college, and some of the difficulties I’ve been having recently.

As was the case last week with my long tangent about housing and medical accommodations, I need to give you a little bit of background before I get into my regularly scheduled griping. The transition to college, with regard to food and my eating schedule, was a big one— in terms of the plain fact that I wouldn’t be able to eat my mom’s familiar cooking every night for dinner, and that I wouldn’t be regularly shopping at a grocery store to ensure I could secure safe foods. We’ll talk about what I mean when I say ‘safe food’ in a few paragraphs, but for now, I’ll tell you that the transition to college with regard to my diet and food schedule was a little tough, but not impossible. I realized relatively quickly once I got to campus my freshman year that the dining hall sold a lot of foods which would work within my food schedule, and it didn’t take terribly long for me to settle into a new, slightly altered, college-edition food schedule.

A ‘food schedule,’ by the way, refers to the extremely regimented and often repetitive nature of my diet. I would consider it a major part of my autistic routine-adherent nature that I insist on eating pretty much the same foods every day on a steady schedule. I might eat different types of the same food— for example, I always have a serving of fruit with my breakfast, and although there are some fruits that I enjoy more over others, I’ll consider that aspect of my food schedule for the day to be fulfilled as long as I get some kind of a fruit serving. The same goes for having cereal for breakfast. I have an unofficial list of ‘acceptable’ cereals, which includes pretty much any flavor of Cheerios or Chex, most bran-based cereals, and a few others, and as long as I get one of those, I consider it in line with my food schedule.

So I have some flexibility, but it’s important to me that I check off certain ‘genres’ of food in my diet. A violation of my food schedule would be to skip the morning fruit serving. This might be hard to understand if you aren’t autistic, but I feel a genuine physiological reaction to that kind of interruption to my diet; I physically don’t feel well until I fall back into a routine that’s familiar. I think there’s something to be said for the impact of routine on the physical well-being of autistic people, and the issues that can arise in the case of some kind of routine violation. But as I’ve told you many times, I’m not a doctor. I can only speak to my own experience.

The short version of what I’ve been trying to say for the past few paragraphs is this: I have a food schedule. It consists of square meals with categorized servings of types of food that I like to include, such as cereal and fruit for breakfast every day. Since coming to college, I’ve fallen into what I would say is almost a more regimented food schedule than the one I had at high school and in the years prior, because the nice thing about a college dining hall is that it’s always the same.

Except when it’s not. And that’s where the reason for my writing this post today comes in.

Over the summer, my college changed dining service providers. This has been the source of a lot of grief from the student body, for some honestly pretty valid reasons, since there are some issues in dining services right now that I won’t really get into aside from what pertains to my autistic food schedule issues directly. Which I will now tell you about. The changes being implemented to dining services on my college campus ever since I arrived in August are affecting my food schedule, to the point where I’m eating way less than I should be. The reason for this is the lack of availability of ‘safe foods.’ And yes, now I’ve reached the part of the post where I tell you what I mean by ‘safe foods.’

To begin, I’ll let you know that I didn’t know of the term ‘safe food’ until relatively recently, but it’s entered my vocabulary, and I’ve found it very useful. I saw it in the context of a video that came up in my suggested on Instagram, where the mom of an autistic child walked her viewers through steps for recovery after a meltdown that she and her daughter found helpful. The video included “eating safe foods” as a suggestion, and showed her daughter having a banana. I realized that I knew exactly what the mom meant by ‘safe foods’— she was referring to the list of foods which her daughter would always eat, and which therefore could be counted on as something to include in her diet. In essence, ‘safe foods’ are, yes, sort of just foods that a person likes, but in the specifically autistic case, they’re familiar foods which contribute to a sense of routine.

Some examples of safe foods for me are whole fruits like apples and oranges, certain brands of granola bars, Honey Nut Cheerios, avocados, and various meals that I’ve gotten used to like things my mom makes or things they used to serve in the dining hall. These are things I can always count on being able to eat, even if I’m feeling particularly stubborn in the food department. Eating is another aspect of my life that’s extremely regimented, and like I said earlier, I’ll feel genuinely thrown-off if I don’t know what foods I can count on to eat, if any foods are going to be safe, or if I don’t eat in my ‘correct schedule.’

In the past, my regimented food habits have gotten really bad. On my eighth grade trip to Washington, DC, I lived off of snacks my mom had packed me and random drinks like iced tea and lemonade, because our teachers took us to restaurants that didn’t serve any safe foods. A concerned teacher contacted my mom, because she thought I was struggling with an eating disorder. In reality, this stubbornness was just a part of autistic routine adherence showing itself.

I’m like that about food to this day, but as an adult with my own money, I’m more able to control whether or not there are going to be safe foods around. This change in dining services at my college, though, has been a huge difficulty. Whole fruits are pretty much the only safe foods that remain at my disposal. I’m living on hummus and random vegetables, whatever fruit I can get my hands on, garlic bread from the bakery, and Raisin Bran. Nothing else is safe, and it’s caused a major disruption to my predicted college routine. Going home for the weekend has been the only way I’m able to get my hands on what people would consider a balanced dinner.

Another way to read this, which would be completely and entirely accurate, is that I am an extremely picky eater. This is true, but it’s because I’m autistic, and I think my and other autistic people’s picky eating is a little more complicated to explain or understand than your average person’s picky eating. This is part of the way my brain is wired, and it’s making it really difficult to figure out what to eat at college right now. I thought I would be able to count on one more year of the familiar dining hall food I was used to, but as in the case of my dorm, I find myself having to adjust to something new all over again.

In a way, being forced to adjust to new things is good, because it builds my endurance for the real world. But I’m kind of getting sick of eating pre-packaged cucumber and hummus. And it’s only September 14th. In the food department, this might be a long year.

Here’s where else you can find me.

Next Time: On my skills as a leader, or lack thereof.

college, routine

Room 242

We’re going to try something between this post and the post coming next week, which I think I’ve only done maybe one other time before (here and here, if you’re curious). The post that you’re about to read is going to function as a two-part “series” on topics that are very similar to one another. The broad theme in question is my re-adjustment to school this year, which I know we’ve already touched upon, but there are some changes in my campus life that are taking me time to get used to. My disdain for change is something that I feel we don’t talk about on this blog as much as it affects my life, but I’m going to dedicate this post and the next one to doing so. Maybe that will make up for my lack of attention to it thus far.

So today, I get to tell you a story about something that actually happened during the spring 2021 semester, but which pertains to the start of this semester pretty directly. The topic of the day is my housing assignment for senior year, and the stink I caused when I originally found out what said assignment was. And to give you context for me raising a stink about housing, I should fill you in on some other things.

Surprisingly, I haven’t written about dorm life on this blog as much as one might think I would. Communal living was something that, back when I started college, took a lot of adjusting to get used to. I think that’s the case for a lot of college freshmen, but it was definitely obvious for me right away. After all, before I moved into my freshman dorm, I had lived in the same room my whole life, with only my family members in the house. Going from that to living in a dorm with dozens of other girls my age in my hallway alone was a lot.

But you know all that, because you understand how college freshman dorms work. I think I’ve mentioned in passing a few times that I’ve had a single in the dorm all four years. This was only unusual my freshman year. My college had a bit of a housing crisis during the 2018-2019 academic year, and the dorms were way over capacity. A common thread of conversation among new college students is asking who your roommate is, so I ran into more than a few situations where I had to explain why I had a single during an over-capacity housing crisis.

The reason for my single in the dorm was, and still is, that it’s a medical accommodation. I wrote about accommodations once on this blog, in a broad post after I got offended because an airport desk attendant tried to tell me I couldn’t board the plane early. Interestingly enough, though, that’s pretty much the only time on this blog that I’ve dedicated an entire post to disability accommodations. The reason for that is likely that I just don’t ask for accommodations much in my daily life. My dorm has always been the biggest thing, and it was important to me when I started college that I advocate for an accommodation in that regard. Lucky for me, the school accepted autism and its accompanying social difficulties as a legitimate reason not to have a roommate, and so I got my single.

What resulted, once I started school, was that I would always have to decide in conversations about my dorm whether to disclose that my having a single was for medical reasons. I was never exactly embarrassed to tell people that I had a medical accommodation, although I would get some dubious reactions when I shared that the ‘medical condition’ in question was autism. (“Wait, really? But you don’t seem autistic!”)

None of this is actually the main point of what I want to talk about today, but it is an important background. The whole “having to explain my reasons for having a single” thing sort of died off after freshman year, because as long as your housing lottery number is good, singles are readily available as a housing option for non-freshmen. As a side note, living in a single has, at times, been a slightly isolating experience, even though I know there’s no question that living with a roommate could ever work for me. I had the opportunity to do an apartment with one of my closest friends here at one point, but I opted out at the last second, because I knew that I wouldn’t be able to handle a roommate dynamic. This has been a part of the autistic college experience that’s slightly limiting, on a social level, but I’m most comfortable living on my own.

I chose to go through the medical housing process for my housing selection all four times, because it gave me peace of mind to know that I would always be guaranteed a single, and wouldn’t have to depend on a lottery number. If you try for a single but don’t have a good lottery number, you can get stuck in a double with a random roommate who also didn’t have a good lottery number, and I wanted to avoid that. The one thing about the medical housing process that differs from the normal housing lottery here is that you don’t get to pick your actual room; you only get to pick your accommodation, and they place you somewhere based on that information. This will become relevant later.

Sophomore year, for reasons discussed above, I landed in a single— but in a new building. This building, for what it’s worth, was a lot nicer than my freshman dorm, and is actually the same building that I’m living in this year. All in all, I’ve lived in the building in question for three out of my four years, with the fourth year being the one I spent in freshman housing.

How, you might ask? Well… I’ll tell you how. You see, I loved my housing sophomore year. I was in a much newer and cleaner dorm, in a room that faced the street and the mountains in the distance (yay New Hampshire!), and the sunrise came through my window. Life was good. Life was so good, in fact, that when I submitted my medical housing application for a single for my junior year, I asked the director of res life if it was possible for me to request a building to live in. When he said yes, I wrote on my application that I would love to be in the same building again, if possible… and a few weeks later, the most peculiar thing happened. I got an email from the medical housing committee with my assignment for the following year… in the exact same room, number 242.

So I lived in the exact same room for two years in a row. The thing you should know is that this made me get extremely comfortable in my dorm surroundings. I adjusted to an incredibly meticulous routine while living in that room. I used the same shower stall in the same bathroom for two years. I didn’t even take my Command hooks down when I left abruptly sophomore year, and they were still there when I got back for junior move-in. I set up my furniture and decorations the exact same way both times. I knew the schedule of when the sun would start coming in through my window. All in all, I just got way too comfortable in room 242.

The thing you should know about autism and routines is that once I get comfortable in a routine, I really, really don’t want that routine to change. So now we reach the point at which I start telling you the actual story that this blog post is about: namely, my housing placement for senior year.

Last spring, I filled out my housing application and mentioned that I’d been in room 242 for two years in a row, and would love to be in it again. In hindsight, I really don’t know why I expected this to work. I guess I just assumed that since they had already given me the same room once, they could do it again for my senior year. Spoiler alert: I am not living in room 242 this year. I had to tearfully part with it at the end of my junior year. But I’m still in the same building, and let me tell you how I got here.

When I got my housing assignment for a new room— number 143, one floor below where I had lived previously— I was thrown off. This was because, as I mentioned above, I had been presumptuous in planning on being placed in the same room three years in a row. Because the housing committee didn’t put me there, I realized that my entire sense of routine in my dorm room was going to be thrown off the following year. Sure, I was going to be in the same building, but the view out my window, the timing of the sun in my room, the bathroom I’d use, and my position in the hallway would all be different. You may think that these things are insignificant, but for an autistic brain that has gotten used to them, realizing that these things were going to change basically put me into crisis mode.

So what did I do? I did what any college student who’s upset about their housing does: I emailed res life. In hindsight, this was my first mistake. I asked them if there was any way I could be placed in 242 again, or if not there, at least on the other side of the building— my rationale was that if the orientation of my room and my window were the same as they had been in 242, I would have an easier time adjusting to the fact that it wasn’t the exact same room. They emailed me back and said no. Because I was in autism crisis mode, this just made me more upset. I tried to come up with numbers of other rooms in the building that would have similar orientations to 242. This, too, was a fruitless effort.

In all, I probably exchanged about four emails with this one poor guy who was just trying to tell me that there was nothing they could do to change the medical placement. What finally made me stop was an email from his end that can be summed up like this: “Room 143. Take it or leave it. Are you sure that your medical documentation covers a single?”

And, look, I get it— I was totally out of line. I should have quit the first time they said no, or, really, I never should have started drama about my room, since the housing people have a lot of other things to worry about besides that a student is having an autism attack over not facing the street and not getting to use the same shower 3 years in a row. They had already given me a room in the same building, which, given it’s the newest dorm on campus, should have been more than enough for me to be happy with. But because I was upset about the specific mechanics of my room’s placement in the building, and the fact that it would be a new hallway, new bathroom, and whole new routine, I raised a stink. I got what was coming to me, and I backed down. I’m writing this blog post from room 143, and I have, in fact, lived to tell the tale.

The reason I’m telling this story in such a lengthy blog post is that I want to give you an idea of what happens for me when my routine gets disrupted or threatened. As you can see, the more settled into a routine or expectation for daily life that I am, the worse I react when something about it gets thrown off. This is true not only for changes to my day-to-day schedule but for big cases of change, like having to adjust to a new dorm room. My email battle with the one poor, unsuspecting housing guy serves as evidence of what can happen when I try to resist that change. The reality, as my housing placement this year has taught me, is that some change is inevitable, no matter how hard I try to protest it. This is something helpful for me to keep in mind as I freak out about what comes after college, but even now, while I’m still a senior.

We’ll talk more about change next week, but I hope you’ve been entertained by this story. I know that certain individuals in my life have been, including an RA in my building who asked to be shouted out in this post. There, are you happy? 🙂

Here’s where else you can find me.

Next Time: Senior year campus changes, part two— the dining edition.

mental health

Autistic Meltdowns

Friends, we’ve arrived at another one of those blog posts where I’m writing about something that happened to me awhile ago, and I’m only just getting around to talking about it on the blog. As is usually the case, the reason for this is that I already had a solid schedule of the posts I was going to write, and the thing that happened to prompt this post occurred in the middle of my posting schedule. This post, therefore, kind of sets off the entire posting schedule by a week, but none of that is even important for you to know, and I don’t know why I’m going on about it in the first place. The point is that what I’m writing about today actually happened two weeks ago, to the day.

But like I said, none of that is really important for you to know. Except for the fact that we’re decently far removed from the incident now, on the day we’re talking about it on the blog. I say ‘incident’ deliberately, because as you’ll soon see, what I’m about to write about was in fact an incident; there isn’t really another way to describe it.

So what did happen? Well, the title of this post kind of gives it away. A meltdown may have occurred. And in recognizing the fact that a meltdown has recently occurred in my life, I realize that I’ve never dedicated an entire blog post to meltdowns in the first place. I think the closest I got to it was this post, which was dedicated to raising awareness for the fact that ‘difficult’ children might actually be disabled, and so we shouldn’t judge them for being ‘difficult.’ The nod I gave to the idea of autistic meltdowns in that post was more or less that you shouldn’t get frustrated with or judgey about, for example, a child crying in a store, since that child might be disabled and having a meltdown or a difficult day.

But not only was that post not really about meltdowns as a concept, that post was also about children. As someone who read that post discussed with me in the comment section of it, it’s not just autistic children who experience meltdowns— all autistic people can experience them. So when we talk about meltdowns, we should be careful not to assume they’re something that only autistic young people experience, and that autistic people grow out of meltdowns as they approach adulthood. The reality is that meltdowns can happen for an autistic person of any age. And that’s the short version of the qualifying information for why we’ve landed on this topic on my blog today.

So in a more direct way, without skirting around it in the passive voice, I’ll share with you that I had a meltdown recently. It was the first time in a long time that I’ve been able to recognize a state of extreme distress as a meltdown specifically, rather than just a bad mood or bad day. And because I run this blog in a state of full transparency, I’m going to use the recent example of what happened to me to talk about the way I experience meltdowns.

Before we go further, though, we need to define what an autistic meltdown is. I would say that meltdowns are some of the most recognizable autistic traits, simply because in the stereotypes put forth about autism by the media and the general public, meltdowns are something that are made out to be commonplace. They’re one of the major difficulties cited by parents who take to the internet to express the difficulties of raising a child with autism. They’re also one of the most difficult parts of living with autism, as the autistic person.

A meltdown is what happens when stimulation, sensory input, and emotional distress all come to a boiling point at once in an autistic brain. This is not a clinical definition, because as we’ve discussed on this blog many a time, I am not a medical professional; I’m just a person with lived experience of being autistic. For autistic people on the end of the spectrum whose need for support in the neurotypical world is higher (problematically known as ‘low functioning’ autistic people), meltdowns tend to be a lot more common. They can take many, many forms, for people on all parts of the spectrum: sometimes it’s just crying, and other times it’ll involve incomprehensible speech or shouting, and other times it can manifest in entirely different ways like selective mutism or violent outbursts (such as hitting a caretaker). It’s the peak of autistic discomfort, both for us and for the people around us.

A meltdown is not the same thing as sensory overload or an anxiety attack, although both of those factors can play into the buildup for a meltdown. What I think is unique about an autistic meltdown that you won’t find in many other neurodivergent conditions is that an autistic meltdown can be triggered by something that seems, to an outsider, to be extremely irrational or insignificant. Because autistic people often cling to routines and patterns that wouldn’t be significant or make sense to an outsider, it would seem strange to be crying and in shambles over something like someone moving one of your things into the wrong spot on your desk— but that’s a reality for many autistic people, and I think it’s something that would be extremely difficult for a neurotypical person to grasp, understandably so.

But I’ve danced around this idea with abstract explanations long enough, so the best way I can continue to lay this out for you is to explain what happened to me two Tuesdays ago. Maybe the worst part about meltdowns is that you sometimes don’t know why they’re happening at all; they just come out of the blue, or as the result of other things piling up until you’ve become overwhelmed without realizing it. That was what happened to me two weeks ago, and I’ll do my best to give you the big picture so you can understand.

I had a stressful week before I moved into school. I think it was a combination of suddenly realizing that the summer was over, and a lot of my growing pains about adulthood approaching, and procrastinating my packing, and overthinking a number of random things, which is something I’m extremely prone to. I didn’t realize just how emotionally distressed I was feeling until my meltdown was already happening. To give you an idea of how bad it was, I was crying myself through the day for a solid two or three days in a row. It got to the point where my parents got frustrated and didn’t know how to help me, and I don’t blame them for getting frustrated, since I, too, would become frustrated if my child was crying nonstop for days on end with no apparent trigger aside from having too much on her mind.

So I had a meltdown. I only knew it was a meltdown after the fact. Aside from crying and not being able to breathe properly, I took one of my school textbooks and smacked my shins repeatedly, to the point where I got bruises that just faded a couple of days ago. I’ve struggled with hitting myself when I’m melting down or otherwise overwhelmed for many years, and I know it’s a practice that harms me and helps nobody, but it’s a reflex reaction that comes with distress, and I felt that it was important to include that in this post to give you a better idea of what meltdowns are really like for me.

This is what I would consider to be one of the ugliest parts of my autistic experience. I’m twenty-one years old, and I beat myself up with a textbook because I was having an autistic meltdown. But I recognize that this is a pattern of unhealthy behavior, and I truly know that I need to come up with better coping mechanisms for those difficult moments. I think the point of this post is not necessarily to present solutions, but to show you a part of my life that is really hard to live with. I wish I didn’t get so overwhelmed so easily, and I wish I knew what to do when I do get overwhelmed.

What I will say is that meltdowns as bad as the one I had two weeks ago are relatively rare. I do get overwhelmed pretty easily, especially when my mental health is on the low, but a true, full-scale meltdown like that is something that only happens to me when things have really come to a breaking point. I cope pretty well with feeling overwhelmed in my day-to-day life, but there are other autistic people who aren’t as lucky as I am on that front. Some autistic people feel so overwhelmed by the world around them that meltdowns are a regular part of their routine, and we need to work on making the world a better place for those people.

But as for this post, I hope I’ve given you a little bit of perspective. I feel like a lot of what I do on this blog is ‘give perspective.’ Then again, that was sort of the entire point of the blog in the first place. Thank you for taking the time to read this post, which has been even more vulnerable than usual (and that’s saying something, since I tend to expose myself a lot on here). I hope you might have learned something. And to ease your mind, if you’re worried, I do feel better than I did at the time of the incident two weeks ago.

Here’s where else you can find me.

Next Time: A new dorm room means I can tell you a story about a nasty email I sent this one time.

college, routine

Back to school: senior year

Oh, boy. This one is going to be a doozy.

Hello, and welcome. It’s occurring to me as I write this blog post that, in a way, I’ve jumped the gun on the post timeline for August. It’s not that I haven’t written what I planned on writing, but I’m pretty sure that I’m breaking blog tradition. I’m 90% positive that it’s become a habit of mine to write the summer-in-review post on the first Tuesday of the school year, and then to do the school year re-entry post the Tuesday after that. I guess I did this in the past to give the re-entry time to “marinate,” or whatever, but as you can tell based on the fact that I did the summer in review last week and we’re here for this post now, I’m breaking tradition this time. I’m not sure why. I think I just accidentally planned it in the wrong way.

But anyway. The point is that I am officially back at college. I’ve moved into college for the last time. I’m writing this post on Monday, to be put up on Tuesday, and Monday is the first day of classes for the year. With that in mind, I got a text this morning/Monday morning/yesterday morning once you read this, from my best friend on campus, that said “Happy last first day!” and I’ve been filled with college senior angst ever since. Actually, my college senior angst started long before this day, but today makes it a lot more real. And so, because this is a blog about my experiences in college, we are going to talk about it.

As always, though, I do have to give you the promised connection of how these things have to do with being autistic. Lucky for you, there are plenty of things about re-entering college for my senior year that have to do with that. You may have noticed my overarching theme on this blog of so many more things having to do with being autistic than I ever realized. That’s no less the case today.

So without further ado… I’ve arrived. I’m sitting in my dorm room, typing this, at the end of the day on the first day of classes. I’ll post this on the second day of classes. I have a lot of feelings about the start of this school year, but one thing is for sure: I never could have conceptualized myself as a senior in college back when I was an angsty high school student who was scared of even thinking about college. Not because I didn’t think I’d ever be a senior in college or anything like that— I knew that this time would come; I just had such a paralyzing fear of thinking that far into the future that I didn’t even know how to begin to imagine what it would be like. (I try to keep this in mind when I get that same paralyzing fear about my future after college, but we’re not going to talk about my future after college today. At least not in depth.)

It’s tradition that I use the first blog post of the school year to fill you in on how the transition from summer at home to campus life has been going. I’ve done this re-entry post twice now: for sophomore and junior year, and you can kind of count this post from way back when I started this blog as the original freshman year “starting college” post. Since this is the last of my four years here, I’ll make it four for four.

So I’m in my dorm. What I’m about to say may appear obvious if you read back far enough on this blog, but I’ll tell you anyway that this is historically a difficult transition for me to make. After all, I really enjoy being at home, and have even more so ever since I came to college. I got a little better about not rushing home every weekend to avoid having a social life towards the end of junior year, but the fact remains that especially after a whole summer spent at home, leaving the comfort of the at-home routine for a new routine is tough. The junior year transition was difficult for COVID reasons, but I think it would have been a little easier on me had it not been for COVID. In other words, I was getting really comfortable with my college existence right when COVID hit, and junior year sort of set back the clock in that regard— but now that I find myself a senior, at what I can only pray is the end of COVID, I’m sort of back in the spot I was during sophomore year when everything was going good for me at school.

Because what you should know is this: I’m really branching out, at least when you look at me now and compare me to myself from freshman year. I’m holding a few small-time campus leader positions in my extracurriculars, and I’ve really focused in on my academic interests. On top of that, which I maybe should consider even more of an accomplishment, is that I don’t just sit in my room anymore. I’ve only been back at college for a few days, but I can already say that I’ve spent more time outside my room than in it. I do like my room, but not enough to spend every free moment and weekend sitting in it being bored and antisocial.

In a way, coming back to school this time has just been a matter of adjusting to a new room and a new class schedule— and both of those things will, yes, take some adjusting, because I don’t like changes to my routine, especially when they make me busy or alter my surroundings. But once I make those things into my new routine, a senior year routine, I can honestly say that it’ll pretty much feel like I never left. Even having been back at school for a couple of days, I already feel that I’m in a very familiar space— because I am. The added bonus of campus looking essentially normal (this normal campus brought to you by the COVID vaccine…) is helping the adjustment process along.

Even as I say this, though, I know that I’m still having a tough time adjusting. I think part of it is because the summer felt so criminally short this year. I talked about that a little in my blog post last week, but I think that the fact that I honestly feel like summer shouldn’t be over already is making the adjustment to school a little weirder. Once I’ve been in classes for a few days, and I’ve accepted the new reality of my schedule, I think the weirdness of that particular feeling will wear off. A new school year has started, and I need to accept that rather than mourn the free time of summer, since the latter will get me nowhere.

I think the best way I can sum up the way I feel about the start of this year is… weird. Not bad, by any means. I have a lot to look forward to this year, and I don’t intend to let my senior year angst ruin the fact that I have a whole year ahead of me. There wouldn’t be any use despairing about the fact that it’s my last year, and that after that, everything is going to change for me again, just when I’ve finally gotten used to a college life that took a lot of getting used to. That may be a really tough pill to swallow, but I can’t waste away my senior year worrying about changes that haven’t happened to me yet.

So I’m going to enjoy this year instead. Like I said, I have so much to look forward to, and I’m trying to take things one day at a time. I do feel the creeping sensation of knowing that some things— like move-in and the first day of classes— are happening for the last time, but I think the fact that endings are making me sad is a good testament to how far I’ve come as a college student. I spent my entire freshman year wishing I could go home. I spent sophomore year finally getting used to things, and then the entire world got thrown off-balance. I spent junior year in a terrible mental health rut. Lately, I’ve been anxious and not in my best state of mind, but I also haven’t been in my worst state of mind, either. And I do think that I’m going to feel better as the days and weeks go along.

I’ll have a lot of posts for you in the future about senior year angst. I started on that train of thought just a little bit in my post from earlier this month about being an autistic adult. The prospect of senior year ending is much, much more scary to me than senior year itself, and I think I should be grateful that I’m not afraid of college anymore. In fact, I’m going to be sad when it’s over. So I’m trying to enter this new year with that in mind. I’ve reached a point where my life at this college is very much part of my routine, which I think is why my transition has been relatively quick and painless. Do I still miss home? Yeah, of course I do. But at least I’ve learned to be here without just wishing I were home all the time. I’ll count that as a win for me in my ongoing adventure of going to college.

So that’s that… and I’ll have more to say about all of this in the future. As I am writing this on Monday night, I’m very wiped from the first day of school, so I’m going to put this to bed and post it in the morning. Until next week, here’s where else you can find me.

Next Time: What do my meltdowns look like?

mental health, routine

Summer 2021: in review

So I’ll have to be totally honest here… as I sat down to write this post, I had to take a second and refresh my own memory as to whether summer-in-review posts are even part of my blogging routine. I think that deep down, I knew that they were, but I feel like I write so many “period of time in review” posts on this blog that sometimes I wind up forgetting what I do and do not review. As evidence that I am not, in fact, losing my mind, I found that I did indeed write a summer 2020 in review post. So here we are. It may be pretty easy to guess what’s coming based on this opening paragraph.

“But Madison,” you ask, in a state of confusion, “how can your summer be over already? Didn’t it just start?” Well, at the risk of sounding like a grown adult reminiscing about the good old days, things go by quicker than you think they will, as it turns out. (I should probably get grief for referring to “grown adults” as a separate concept from myself, especially given that I spent all of last week’s post lamenting about the fact that adulthood is a high-speed train I have no choice but to board… but I think not feeling like an adult was the whole point of last week’s post to begin with, so maybe I’m just proving my own point all over again.) To get back to the actual point I was trying to make, yes. The summer is coming to a close. By this time next week, it’ll be the second day of classes for my senior year. And though I’m not writing this post from my dorm, I do move into my dorm today, the 17th.

So… here we are. At the end of another summer. And as is custom, I want to wrap it up with a blog post. So before we launch into too much more senior year despair, it’s time for a bit of honesty, as I do my best to make a general summary of the summer of 2021.

As I already said, this one went by really quickly. I mean, blink and you’ll almost miss it. I get that that sounds extremely cliché, but whatever; it feels true. I think the downside, or maybe one of multiple downsides, of feeling like the summer passed me by so quickly is the illusion that I didn’t “do” anything, which is absolutely not true, because I had a really busy summer in which I did a lot of fun things. I think to talk about my own evaluation of self-productivity, I need to take a step back and explain a few things.

So, first: summer work. I had an interesting situation this summer with regard to a job, and you heard about it a little when I did my post on the difficulties juggling executive dysfunction and a job where you’re working on your own time. I’ve mentioned since then that I did get my summer work done, so I should feel like a functional human being at least in that regard. I think my summer job is actually a good testament to personal academic progress and working on stuff that pertains to what I study during the school years, so I’ll take this opportunity, since this is the summer in review post, to tell you about it.

This summer, I wrote a paper this summer through a school-funded research grant, with the goal of kickstarting the research for my senior thesis in history. I don’t really write about my research on this blog, mostly because it hasn’t come up, but I can tell you a little about it now. I’ve had a high academic interest over the past two and a half school years in a pilgrimage route in Western Europe, which started in the medieval period and continues to exist, known in English as the Way of Saint James. It’s historically been a religious pilgrimage, but with globalization and the more secular nature of the modern world, both religious and non-religious travelers make the journey today. The destination is a shrine in northern Spain said to be built over the burial site of Saint James, one of Jesus’ Twelve Disciples. None of this has to do with autism, obviously, but it does have to do with me, since it’s been a big study focus for me on my own time these past few academic years. I’m a double major in history and theology, and my research has been a big thing for me because I think it helps me talk myself out of the idea that I’m an impostor and that I’m not good enough to do high-level academic work.

So I did my summer research project, and I actually just talked to my professor/research advisor today about new ideas for new research papers in the same subject area. All in all, I’m doing a lot with this— more than I ever thought I could, to be honest. I have a tendency to think myself into a hole when it comes to executive dysfunction, and it can sometimes get so bad that it cripples me into a complete lack of productivity. This summer job has been an exercise in pushing myself out of those ruts, and while I did have a lot of struggles and uncover a lot of fears about functionality for the future, I also accomplished my task at hand. I’ll consider that a win, at least for the summer.

So that was summer work. I can also tell you that I was on the move a lot more this summer than I pretty much ever have been any other summer, all for good reasons. On top of the vacations with my family that we do every summer, I was making a pretty regular trip back and forth to visit someone who we’ll talk about in a post a few weeks down the line… so more on that later, but the reason I bring it up now is that traveling more was a big part of my summer. This may also have been a big reason why summer went by so quickly— because I was more active, and on the whole, I did less sitting around. All of this was very good, and I write it here with the purpose of informing you that traveling was a big part of how I spent my summer.

But because I’m in the interest of writing on this blog with full honesty, I have to share something else with you, too, something that doesn’t have to do with personal work accomplishments or fun vacations and trips I took. For a reason that I still don’t know how to explain, I’ve created a lot of anxiety for myself this summer. You might have been able to gather a little of this based on the anxiety post from awhile back, but I can tell you now that things haven’t exactly gotten better for me in that department in the time since I wrote the post. I wish I could tell you why my anxiety has seen such a spike this summer, but I think I just have such a tendency to get in my own head during idle time that I’ll find something to spiral about no matter what it is. In other words, I make problems for myself; they don’t come from other people or circumstances in my life. I find incredibly senseless things to be anxious about. I always have.

And to add another piece to the puzzle: I haven’t been writing, either. It’s been a very long time since I mentioned on this blog that I do creative writing as a hobby, but I do, and I’ve been struggling with a ton of writer’s block that goes hand-in-hand with the anxiety. As I’ve written about, anxiety can take the place of a special interest in my head, and since I usually find my special interests in creative writing projects, I’ve been too anxious and in my own head to write. I’m conscious that this is a huge part of why I’ve felt like the summer got away from me so fast. Because it’s time away from school, I usually use the summer to work on writing a lot more than I would during the school year. And because I’ve been stuck in a rut in that regard, I’ve been very hard on myself over it. In terms of writing, this summer was a total bust. Which is a huge bummer, since I did have the time to write if I were motivated to do so, but there’s nothing I can do to change that now. I’d love to do a post in the future on the relationship between autism and creative work, so stay tuned for that at some point.

The reason I bring that up is because I just can’t think of summer without thinking of writing. It was weird not to write this summer— aside from a few small things here and there, plus writing this blog, which I don’t really count— but I know that it’ll eventually get better in that regard. I wish that I had not been as anxious this summer in my idle time as I was, but I was, and I think that’s why I felt like everything went by so quickly. If I wasn’t actively traveling and focusing on that, or working on my research project… then I was pretty much at home and anxious.

I think that as someone who struggles so much with executive dysfunction and mental health, I place this huge emphasis on what I do with my free time. I even measure my self-worth based on how productive I am with my precious time to myself. When I fail to deliver in that regard, my mental health suffers as a result. I get into a cycle when this happens, and you might be able to imagine that it’s not the most productive mindset. But I’ve never been easy on myself, so really, what’s new.

I know that I’ve presented my review of this summer in a weird sort of format, by dedicating paragraphs to different topics. But I hope that I’ve given you an overview, if a slightly disorganized one, of what has been a quick and eventful season, with some struggles but a lot of good things in it. I think explaining the good parts of my summer— which did outweigh the hard parts— will be a little easier in a few weeks, because I’ll get a post out that will explain something happening in my life that I haven’t yet blogged about. But for now, I can tell you that while I do regret festering in my own anxiety so much this summer, I’m coming out of it ready for senior year. And I never thought I’d say that, so this is going to be interesting.

Until the start of classes… that’ll be all from me for now. I can’t believe that I’m about to be a senior in college. Look how far we’ve come! Here’s where else you can find me.

Next Time: Moving into college… for the last time.

college, the real world

An Autistic Adult

It feels like it’s been a lot longer than a week since I last wrote on this blog, but I think I can chalk that up more as being a side effect of me completely losing all conception of time during this part of the summer than anything else. I’ve reached the “I forget what day of the week it is” stage of summer vacation, which should be a surefire sign that the start of school is approaching. And it is, by the way. For better or for worse.

I have a sort of interesting post topic for you today. I just went in and scheduled the topics for my blog posts for the whole rest of the month of August, which, first of all, is more planning ahead than I usually do, and second, allows me to comment right now on what’s in store for you, the reader, in the coming weeks. You’re going to get a lot of weird, reflective stuff on this blog during August, mostly because of what’s coming more and more quickly every day: the start of my senior year of college. Trust me, I don’t want to think about it either. But it is coming, so we have to write about it.

I don’t want to talk directly about going back to school today. We’ll have opportunities to do that in future posts. I’ve said a few times to my family that I’m not so much apprehensive about actually going back to school as I am about this summer ending, because at present, this summer is the only thing standing between me and my last year of college. Which makes me realize that said year of college is the only thing standing between me and the real world. And that’s what I actually want to talk about today.

The “real world” is a nebulous concept, which I sometimes write about on this blog. I guess it’s been long enough since I introduced the general concept that I should probably give it a definition. It’s one of the category sorting topics, but I pretty much only tag a post with “the real world” when I’m talking about some unpleasant experience in public or some unavoidable conflict involved with being a functional human being. In other words, it doesn’t come up a terrible amount— at least not in comparison with more major topics like sensory and social issues.

So what is the real world? And why is it a source of anxiety for me lately?

It might be a slight consolation, at least for myself, to acknowledge that my definition of the “real world” keeps changing. When I was in middle school, I thought of high school as the “real world.” When I was in high school, and had become adjusted to that environment, I thought that the transition to college would represent entering the “real world.” Now that I’m in college, I think of it as even further still into the future. I guess if I keep shifting the goalposts, maybe I’ll realize eventually that I’m already in the real world, and that’s just how it is. But for now, I still don’t feel like I’ve gotten there.

The reason I’m thinking about this now is for two reasons: first, the aforementioned onset of senior year, and second, I turned 21 this past weekend. All signs are pointing toward the very real and unavoidable outcome of my future: that I am going to have to eventually become a functioning adult. As I approach being a senior in college, and doing college things for the last time, I’m thinking about this more than ever.

“But Madison, you’re already a functioning adult!” I would beg to differ. Let me try to explain. Yes, I am a college student, and yes, I do functionally live away from home for nine months out of the year, despite the difficulty of that task. Yes, the transition to college was a really, really difficult one— by far the most difficult transition of my life thus far. Yes, I have long since adjusted to college life, and have accepted it as part of my life’s routine. I’m home sometimes, and other times I’m at school. This is how it is. One could argue that my routine and life habits at present constitute those of a functioning adult. I think of it a little differently.

The thing is, I’m in an interesting stage of my life right now. I’ve spent the past few years in the nebulous age category of “young adult,” where I’m aging out of being a teenager but don’t quite feel like a real adult yet. I think this is a common weird feeling about age among college students, and it’s bolstered by the fact that the majority of college students still aren’t completely independent adults yet. Most of them, myself included, go home for school breaks, and are still financially dependent on their parents/families in some capacity. It’s true that we’re less dependent than we were in high school, but college is a weird phase of life where we’re not quite fully independent yet. I get that there are exceptions, but I fall into the majority category here.

So the result of all of that for me is this: I don’t feel like I’ve entered the “real world,” because I’m still in college. And nearing the end of college is making me realize that, despite the fact that I’ve finally adjusted to and learned to enjoy my existence at college, everything is about to change for me within a year’s time. In essence, I’ll be back where I was in the summer of 2018 at this time next year: awaiting a major life change, with no idea of what is going to happen. The difference between the summer of 2022 and the summer of 2018, though, will be that next summer, I’m going to have nothing standing between me and having to be completely independent. And that’s what I mean by the “real world.”

I haven’t extensively shared my plans for the post-college future on this blog, mostly because I didn’t think about them for the first half or so of college, and then I spent junior year in blissful ignorance, like, noooo, I don’t have to think about that yet, I have plenty of school left. Now that I’m a senior, I don’t have much of a choice. I do want to go to graduate school, and you could argue that entering more school might mean that I’m going to prolong my entrance into adult life and the real world— but even graduate school is a lot different than undergrad, and so I’m still going to have to be an adult in new ways.

What does any of this have to do with being autistic? Well, first of all, I hate change. The knowledge that such major life changes are unavoidable in my future doesn’t sit well with me, especially not as I get closer to the start of the school year. But secondly, and maybe more significantly: I’m making the slow transition between being an autistic teenager/young person and being an autistic adult.

I don’t know what autistic adulthood is like. There are a lot of resources by and for autistic adults that might help me learn a little about what it could be like, but the bottom line is that I’m not going to know how my own experience will go until I’m living in it. And I’m well aware that the transition into independent, adult life is going to bring me many new challenges, none of which are going to be easy. College may have been a huge adjustment, but at least it was still school. And at the end of the day, I did choose to attend the closest-to-home college I’d applied to, and I have been traveling home pretty much every other weekend for three years. Graduate school and the working world are going to present me with significantly less comfortable options. It’s a transition I can’t even begin to think about, and I think autistic adulthood comes with plenty of its own challenges, making it just as difficult as autistic childhood.

And so it gets me wondering: will I even be able to handle the real world? And look, I know that I will, at least on paper. I’ll adjust to whatever new life I’m starting after college, and I’ll be fine. But I think that there’s a difference between “fine” and “actually functioning,” and I don’t know how it’ll go for me, exactly. I can see a lot of possible future scenarios where my mental health really suffers because of how new and different everything is. I can also see myself melting down more often. There’s no way to avoid the most difficult transition thus far of my life, and all I can do right now is be anxious about it.

So there you have it— these have been some of my thoughts as the end of the summer approaches and the school year looms. I’m experiencing a lot of growing pains right now, and it’s a lot to handle, especially with the way my brain tends to latch onto things. But for now, I do have a whole year of school ahead of me, so I’ll try to focus more on that and less on all the doom and gloom future stuff. We’ll see what happens.

Here’s where else you can find me.

Next Time: The summer in review.

social

Being A Bad Friend

Here we are again on a Tuesday— and would you look at that, this time I’m actually writing and posting on a Tuesday! For those of you who are confused by that sentence, I direct you to last week’s blog, which went up a day late thanks to my poor planning. I told you I wasn’t going to make a habit of dropping the ball, and this is me following through. But funnily enough, the topic for today’s post kind of centers around me dropping the ball on other things, so I guess you’ll have to deal with that.

We’re returning to that funny corner of my blog today where I just completely roast myself for annoying, mildly problematic, or generally bad habits or behavior. I’ve done this before plenty of times in the past— like that time I roasted my high school self for thinking friendship was a myth, threw an immature fit about being perceived as weird, or even when I did an entire post on finding myself cringeworthy. Really, I deserve to be roasted for all of the previously linked blog posts. There are times when this blog gets really stupid in terms of me trying to explain away my own behavior. Yes, it’s because I’m autistic. But being autistic doesn’t mean I’m absolved of all blame for my mistakes and problems. That’s something I’ve learned more and more as I’ve gotten older and more mature, and as time has passed since my diagnosis in high school.

Anyway. All of that is a precursor to what I’m going to talk about today, which is actually something I’ve written about before, albeit not exactly in the same way I’m going to talk about it today. I want to talk about the fact that I’m a really, really bad friend.

I get it: we’ve been here before. Social difficulties are such a major part of my autistic experience that they’re a sorting category for posts on this blog, and especially during tough times at school, we tend to dwell on social topics a lot here. I’ve circled the topic of being a bad friend before, but it’s always been in a way where I try to write a post explaining away why I’m being a bad friend. I did it first two summers ago, with a post about not texting people back, and then again earlier this past school year, when I discussed going off the map during school breaks.

Today, I want to converge all those topics and say something broader about myself. The posts I linked to above are very much instances of me trying to use my autism as an excuse for what I do to my friends far too often, which, to be frank, is to completely ignore them and shut them out at random times. The thing that I’ve come to accept is that being autistic isn’t an excuse for being a bad friend. But I am a pretty bad friend anyway, so let’s talk about that.

I can’t say that I don’t have friends. I used to think that it was a necessary part of my autism not to have friends, and honestly leaned into that like a crutch. I thought that since autism comes with social difficulties, that there was no way I was going to have friends, so might as well not put any effort into social relationships at all, because it wasn’t worth it. I wrote that extremely whiny blog post during November of my freshman year at college about how my high school friends had gotten together without me. Looking back, I say to myself, yeah, of course they got together without you! You were a bad friend! You were never around, you never texted anybody back, you caused unnecessary social friction, and you never said yes to plans because you couldn’t bring yourself to leave the house.

So of course the people I was “school friends” with in high school don’t bother with me anymore. They shouldn’t! I wouldn’t bother with me, either. I’ve always used autism as an excuse for being the friend who never shows up and never says yes.

Once I became aware of this issue with myself, I tried to force the bad-friend habits out of me. And in some aspects of my life, that did work. I made some good and close friendships with people at college, some of which resulted in me being genuinely upset about my junior year ending and writing emotional blogs about being invited to small get-togethers. Make no mistake: at this time in my life, I have friends. My friends are both at college and outside of college; although my active friendships outside of school are maybe four in number at most, they do exist. There are people who consider me their friend.

But here’s the problem. I am not a good friend. And I know, I know; I’ve said that, like, five times already in this post. But this is something I’ve genuinely accepted to be true, and here’s why. I’ve matured with terrible habits when it comes to friendship and communication, most notably being almost impossible to reach via text, the subject of one of my earlier friendship blog posts. I also have a seriously bad habit of letting my lack of a social battery get in the way of making plans. I’ll say no for the most absolutely stupid reasons, and then I’ll feel bad that I didn’t go, despite knowing I can relax easier at home.

When you’re the friend who says no all the time, eventually you stop getting invited. That’s what I learned with my high school friends, and I absolutely deserved to learn that lesson the hard way. The issue is that autism can place such a crippling block on your social energy that you’ll trick yourself into thinking you’re okay being alone, and then you feel really sad when your friends finally get tired of you never texting back and never saying yes to hanging out. My social issues are best described as a balancing act between forcing myself through communication that feels hard for the sake of preserving a friendship I genuinely care about, and icing everybody out because I’m being socially lazy.

And yes, I get it— the way I write about this makes me sound like I don’t care about communicating with my friends at all, but I cannot emphasize how incorrect that would be to say. I care about maintaining my friendships so much, because I’ve worked really hard to get to this social point in my life, and I’m doing so much better with it than I once was. I’ve learned that sometimes you just go out even if your autistic brain is telling you you aren’t up for it, because you’ll have put in the work to maintain a friendship, and that’ll be worth it in the end. What I’m still awful about is texting. Everybody gets stressed out when they look at my phone home screen, because they see I have upwards of thirty unread messages. I’ll legitimately see a text come in and then just not respond. It’s an awful habit, and I know I should break it. I’ve just let myself become so used to being a bad communicator that my autistic brain tells me there’s no way I’ll ever be a good one.

I’ve lost friends because of this. There are people out there who have put in way more effort with me than I deserve, and I feel guilty every single day that I haven’t worked as hard as I should on those friendships. I always feel weird reaching out when it’s been a long time, because I’m fully aware of how crappy it is to do what I do, and this is how I’ve fallen completely out of touch with some people. I hate that I do this, but I’m conscious of the fact that I do.

This post isn’t really something I consider to be up for debate. I know that I’m a bad friend, or at least a pretty mediocre one. I know that my communication skills are awful. I know all of this, but it’s way too often that I let myself get stuck in the social rut of not wanting to do anything about it. I don’t know if this reflects more on autistic social issues or on the mental health issues caused by autism, or maybe a little of both, but what I do know is that it’s not a sustainable practice for life. I’m already worried about what will happen once I graduate (in less than a year’s time, mind you) and don’t have the structure of college that lets me see my friends on a regular basis. The effects are already taking shape, given that some of my friends graduated this past May.

I’ve always wondered what my social life will look like as a post-college adult, and I’m more than a little apprehensive to find out. I know that the natural solution is just to work on it, but dealing with social issues so often feels like fighting a war with my brain. It’s autistic tendency versus the fear of losing friendships that I value. It’s knowing I can’t just be stubborn and ice everyone out, despite my tendency to do so. Maybe I’ll get better— after all, I’m better than I used to be. But this is definitely something that I’ve thought about a lot lately, in the peak of a pretty self-isolating summer. I hope it gives you something to think about today.

Here’s where else you can find me. I’ll be 21 the next time we meet, so just prepare yourself for introspection…

Next Time: On being a year older.

discussion, identity

Is Autism Genetic?

Okay, friends— it’s Wednesday, and I’m here. I’ll admit that it is not, as I promised to you in my little fragment of an announcement post last night, “first thing in the morning,” seeing as it’s midmorning when I’m getting started on this, and I’ll probably wind up posting it closer to lunchtime than breakfast. I’m playing catch-up on a number of things today, this blog included, since I’ve been traveling, and this marks my first morning at home since before I went on vacation last week. This is a good thing, at least for me, because I got to travel— but maybe not for you, as the reader, since you’ve had to wait an extra day for my blog post. This marks the first time in a good long while that I haven’t written on a Tuesday, and for that, I apologize.

But anyway, enough yammering. I’ve already made you wait this long to read a delayed post, so I might as well write this post to make up for my delay. I still stand by the fact that I think that this is going to turn out better today than it would have had I attempted to write it in the small hours of the night yesterday, given the fact that I was pretty tired and unmotivated.

So let’s finally get to my topic for the week. It feels like it’s been a really long time since I wrote on this blog, but in actuality, it’s been eight days. I guess maybe I feel that way in part because of the fact that last week’s post was more of a PSA than it was a personal post. I’m glad that I wrote about the #StopTheShock cause, and I’ll keep you updated on this blog if I hear more about social efforts on that front.

Now we’re getting back to personal, so come with me on this journey. A disclaimer before I begin today: I am not a scientist. I’m not even a science student. What I’m going to write about today is purely conjecture based on my own personal experience, and I’m not attempting to draw any official, scientific, technical conclusions based on observation alone. Think of this post as me hypothesizing based on extremely limited evidence. I realize that this disclaimer is slightly confusing out of context, but the reason for it will become very clear in a moment.

Because what I want to write about today is the following: is autism something that can be passed on genetically?

And to address that question, I have to, as usual, turn to my own experience. After all, my own experience is the whole reason I’m asking this question to begin with. This is another one of those cases where I’ve begun to notice something I never noticed before based on a growing understanding of my own experience with autism and the ways in which autism presents itself in other people.

So what leads me to ask this question in the first place? Well, the first thing is my mom. While my mom has never gone for an autism diagnosis, she and I have had a good handful of conversations over the past few years where we agree that she very likely falls somewhere on the autism spectrum. I know I’m not a doctor, but I consider myself generally good at being able to observe autistic behaviors in other people based on a lot of a.) reflecting on myself, and b.) learning about the many different ways in which autism presents. My non-scientific term for this is the “autism radar,” which, if you want, you can think of as something like the idea of “gaydar” in the LGBT community.

I get it— it’s not the most efficient or accurate method. When I guess that someone else is autistic, I’m not going to be right every single time. But given the fact that in this particular situation, I’m talking about my own mom, and that she and I have talked about it a lot, and that we both agree that she probably is some degree of ‘high-functioning’ autistic, I think that this is a reasonable judgement for me to be making.

And so, there you go: based on several years of observation and a shared understanding of the many facets of autism between the two of us, we’ve drawn the conclusion that my mom is probably autistic. And because of, well, everything about my life, we know that I am also autistic.

So there’s that part. On its own, I think the observation of two generations of autism in one family maybe wouldn’t be enough, but it’s definitely enough to get you thinking. The other piece of the puzzle, though, and what leads me to write this blog post in the first place, is that my mom and I have also talked about observing autistic behaviors in my grandfather.

It’s different in this case, because despite the fact that she and I have picked up on a lot of things my grandfather does over the years, and concluded that yes, he would probably be diagnosed autistic if he sought it out, we haven’t talked about it with him directly. The fact is that my grandfather grew up during a time when there was a severe misunderstanding of mental health across the board, and autism was very much included in the list of misunderstood things— so pretty much the only people being diagnosed when that generation was growing up were the autistic people with extremely high support needs, and those people were mistreated, misunderstood, and often committed to inhumane mental health institutions.

As we’ve discussed, though, autism is a spectrum. And for those who aren’t on the far end of the spectrum, where autism becomes ‘obvious’ and when a person needs a lot of support, autism can go undetected, or even be incorrectly identified as different things. That happened to me when I was a small child, when a specialist mislabeled my obsessive and anxious tendencies as OCD, when in reality they were a piece of evidence of the bigger and broader struggle of autism.

Anyway. I’m saying all of this to tell you that, if my grandfather is in fact autistic, him being undiagnosed wouldn’t be unusual, given the lack of understanding about autism and lack of general regard at all for developmental disabilities and mental health during pretty much all of human history but the past forty or so years. I also mentioned that we haven’t talked about it with him, and this isn’t because we’re actively avoiding the topic but because bringing up autism wouldn’t exactly be relevant to him or impact his life at all. As a man in his late sixties who has owned the same business for his entire working life, lived in the same town since he got married, and generally established a pretty predictable and comfortable life routine, the realization that he is autistic wouldn’t be groundbreaking. Maybe it would explain some things about the way he experiences the world, but this just isn’t the kind of conversation you start with a relative out of the blue. Because my grandmother on my mom’s side reads my blog, he might find out about this post, but this wouldn’t be some kind of earth-shattering information, which is why I feel comfortable writing on my blog about it.

So I’ve presented two pieces of evidence, both from the same side of the family, of relatives who aren’t me who might fall on the autism spectrum. I’m coming to the slow conclusion that, if autism really is genetic, I have a pretty obvious genetic line to trace it through. I can’t go any further back than my grandfather, since my great-grandparents have passed away, but I would be interested to know if there was any evidence of autistic behaviors in this same line that I can trace through to my maternal grandfather.

And if there is a further line back, then what does that mean for whether autism can be passed on genetically or not? I’ve always assumed, based on this observation, that if I were to have biological children, they would have a higher probability of being autistic than children born to neurotypical parents do. That brings me to the next obvious point that might come to mind during this discussion, namely: there are a lot of autistic people who have neurotypical parents, grandparents, and relatives, with no evidence of autism in their family at all. I feel like if it is true that autism is something that can be passed on genetically, it must not always be genetic, since of those cases of autism spontaneously appearing with no family history of it.

I’m not a geneticist, and I know that scientists have never been able to find an ‘autism gene.’ I think that it’s a good thing that we haven’t found an autism gene, since I think that we would see a decline in autism in general if that were to happen; we already have people searching for a cure, and I think that’s the opposite of what we need. But I would be interested to know if there are any other autistic people who can trace autistic behaviors back through their family. Maybe there is something genetic about it, or maybe there isn’t. It’s definitely something that I’ve thought about.

I’ve written a lot, and I think that I’ve at least given a good overview of my own curiosity on this topic. Again, I should reiterate that I’m not a scientist, and that I’m not trying to make any actual claim about genetics— this is more me wondering than anything else. As usual, this blog is based on my own experience, and I can’t claim to be an expert on anything but my own experience. I hope that I’ve given you something interesting to think about!

Here’s where else you can find me.

Next Time: I’m a really terrible friend, but at least I’m self-aware!

Uncategorized

Late post: coming tomorrow!

Friends, I write to you from a delayed state of existence. While it is still technically Tuesday, I’ve reached the conclusion that I am not going to be able to put a blog post up on this particular day, because it’s late at night and I don’t think anything I write at this hour will be of good quality enough to post on the blog. With that in mind, I wanted to update you all and say that I will have a post for you tomorrow instead. I really do like to stick to my Tuesday schedule, and I don’t like breaking routines, but it’s better for me to wait until tomorrow and write a good-quality post than to rush something just for the sake of getting it posted tonight. I’ve been traveling, which explains my delay.

Anyway. I’ll see you tomorrow with a proper post! And I’m sorry about my break in schedule.

discussion, the real world

Stop The Shock

Friends, I should be honest about two things right off the bat. The first is that I’m writing this post from vacation, on my mom’s computer, because, as a result of poor planning, I did not pre-write my blog post for vacation week. This was entirely my bad. My family goes away for this week every year, and you can even read about it in my post from last year at this time, where I went over some of the sensory difficulties involved with going on vacation. I had plenty of notice that this week was going to be the week when my family was on vacation and therefore not at home, and should have planned my blog post accordingly, but I kind of dropped the ball. In my defense, I did know that my mom was going to be bringing a laptop, so I fully intended to fulfill my every-Tuesday promise even while I was away. Consider this some writing on the fly. I’m even writing this on Monday night, so you can’t even say I’m late.

Anyway, the second thing I have to admit to is that I’m changing my post topic for the week. The note at the tail-end of last week’s post about a doctor telling me I’m cured of my autism said that I was going to write this week on whether or not autism is genetic, and I still intend to write that post (next week, in fact)— but today, I want to talk about something a little more immediate. I was not aware of the fact that today’s posting topic issue even existed until within the past week, which is why I’m only just writing a post about it now. The result of being out of the loop on social media is that you miss things. This time, it turns out I missed something pretty serious and important.

So without further ado: we need to talk about the #StopTheShock movement.

If you, like me this past week, are seeing this hashtag/phrase for the first time, I’ll explain it to you. Stop The Shock is an online movement by the Autistic Self-Advocacy Network, pushing for a stop to the use of a particular kind of behavioral therapy at a center for the neurodivergent and disabled in Massachusetts. To be a little more specific and blunt, the Judge Rotenberg Center uses a technology called GED, which administers electric shocks to its patients, in behavioral therapy. The FDA concluded in 2014 that there isn’t any way to use GED therapy without causing significant harm, and banned it outright earlier this year, but it’s largely understood that the center still uses this and other types of harmful therapy.

This is important to me for a number of reasons, many of which will probably be obvious. I think that it’s imperative that we show our support for this movement, because the Judge Rotenberg Center is causing direct and lasting harm to the disabled and neurodivergent by using an archaic kind of behavioral therapy. Electric shock therapy is inhumane and incredibly harmful, and in the small part of history where humanity has had a deeper understanding of mental health, it’s been one of the most severe methods by which to seek to adjust behavior.

You can read this article to get a slightly better understanding of GED therapy, how it works, and the harm it can cause, with an account by someone who the therapy was used on at a young age. I haven’t written extensively about behavioral adjustment therapy for autistic people on this blog, but the Stop The Shock movement falls firmly into that category. Behavioral adjustment therapy is any so-called “solution” to autistic behaviors, and it’s often more harmful and hurtful for the autistic person than it is helpful. The Judge Rotenberg Center is one example of many places in the US and in the world today that still treat autistic and other disabled people in inhumane ways for the sake of so-called “behavioral adjustment.”

If you go to the page linked here, you’ll be able to see that the Stop The Shock movement has been going on for quite some time, and that there was a particular amount of activity around April 24th of this year, which, obviously, has already passed. I wasn’t aware of the fact that this movement exists until a few days ago, when I saw something about it on a friend-of-a-friend’s Instagram story. I’m glad that I did see that when I did, because these kinds of issues are really important to me. I may have been lucky enough not to have to go through intensive therapy at the hands of people who didn’t understand my disability when I was younger, but there are many, many autistic and intellectually disabled people who are not as lucky as I have been in that category. The treatment that patients at the Judge Rotenberg Center are receiving is inhumane, and we can’t keep treating disabled people as if they’re less than human. The FDA has banned the GED treatment, but the article I linked to in the previous paragraph notes that the center is still enacting controversial operations.

So what can you do? Well, the ASAN page on the movement is a good place to start. Those in support of this movement have been encouraging their Congresspeople to pressure the FDA, collecting signatures on petitions, and most of all, spreading the word. I live in Massachusetts, so this issue hits particularly close to home for me. I know that reading this blog post might not lead you to all the solutions about the Judge Rotenberg Center, but at least I’ve done what the Instagram story earlier this week did for me: I’ve informed you of an issue, and now maybe you can spread the word.

The bottom line is that this kind of therapy is archaic, and no one should use it— but the reality is that autistic people all over the world still go through this kind of borderline torture simply for autistic behaviors. We’re not educated enough as a society on how best to help autistic and intellectually disabled individuals thrive in the world, and with every center like this one in Massachusetts that continues to operate with unethical principles and practices, we’re further from progress and justice for the disabled.

I know that this is mostly just a blog about autistic experiences in early adulthood, but sometimes, there are things that don’t really have to do with me personally that I need to draw attention to, and this is one of those times. I hope I’ve raised your awareness on this issue, and hopefully you’ll look up the Stop The Shock cause so that you can learn more. I would be grateful if any of you decided to spread the word or get involved. I’ll be there with you!

Until next week, here’s where else you can find me, and I’ll keep you updated on this blog if there are developments with this movement.

Next Time: Okay, now we can talk about autism being genetic.