Tag: autism

bookmark_border“If you plan to make content that isn’t the exact same content that I would make…. just don’t”

Posted on by Marissa

I recently came across a social media post that said the following:

“If you plan to make content on the distinctions between ODD and PDA* but gloss over the racial disparities and intersectional factors, just don’t.”

My response: Excuse me? Who the heck are you to tell me what type of content I can and cannot make?

The author of the post describes themselves as black, “moderate support needs,” and “agender and queer.” Perhaps belonging to demographic categories that qualify them as more “oppressed” than others gives this person a sense of moral superiority. Perhaps their membership in these socially favored demographic categories makes this person feel that they are in a position to determine what others are and are not allowed to do.

Guess what? If someone wishes to make content about the distinctions between ODD and PDA without going into the alleged racial disparities and intersectional factors, they have every right to do so. As a white, high-functioning, asexual autistic person, I have the right to voice my opinion just as much as you do. You have no right to tell other people what type of content they can and cannot make.

* ODD is the abbreviation for “oppositional defiant disorder,” and PDA is the abbreviation for “pathological demand avoidance,” two mental health conditions that share some similarities.

bookmark_borderTwo types of tiredness

Posted on by Marissa

There are two kinds of tiredness.

The good kind of tiredness is what you feel after working hard. The work can be physical or mental. For example, I might feel physically tired after spending hours moving heavy boxes and putting the contents onto shelves at the grocery store where I work. Doing this work requires effort and uses up energy, but the work is meaningful to me because I am accomplishing something concrete that needs to be done. I might feel mentally tired after watching a big horse race, a figure skating competition, or even a movie or show that I find interesting. For me, processing and remembering what I am watching requires a lot of mental effort. But if it’s a sport or a show that I care about, then the effort is worth it. The good kind of tiredness is the tiredness of a job well done. It’s the tiredness that you feel after working hard on projects that you welcome, projects that you feel engaged with, projects that you chose.

Then there’s the bad kind of tiredness. It’s an angry, nasty, irritable kind of tiredness. It’s the tiredness that comes not from working hard, but from chaos, overstimulation, and frustration. It’s the tiredness that comes from things not going as planned, routines being disrupted, unexpected problems arising, people doing things they’re not supposed to do. It comes from being blocked, due to circumstances outside of your control, from doing things according to your usual steps and routines. Your plan A gets messed up, so you have to scramble to come up with a plan B, and sometimes, if that gets messed up too, a plan C.

For example, I’m trying to explain something, but I keep getting interrupted, the listener inserting their own thoughts before I’ve had a chance to fully voice mine. Or the language-learning app that I am using to learn Italian keeps marking my answers wrong for reasons I don’t understand, causing my lesson to be abruptly terminated because I’ve run out of “hearts” for the day. Or maybe my dad asks me to help fold laundry, but before I have a chance to do so, my mom has already done it. Or perhaps I’m looking forward to eating the small pieces of chips that are left at the bottom of the bag, but before I can do so, someone has thrown the bag into the trash. Or I need to get something out of my locker, but someone else is using the locker directly above mine, and I have to wait for them to move, causing me to be late for my next assignment. Or I need to use the bathroom, but someone is in the bathroom, so I decide to go to the sink to fill up my water bottle while I wait, but someone is using the sink so I can’t do that either (and then, if I’m really unlucky, someone beats me to the bathroom while I’m waiting at the sink!). Or I am stocking the meat department, take a box of steaks off of my cart, and am forced to wait idle as customers stand in front of the steak section examining the various options and talking among themselves for what seems like hours on end.

None of these things is a big deal in itself, and it might even seem silly for me to complain about them. But these are the types of things that, for someone on the autism spectrum like me, can quickly add up into a mountain of stress and mental exhaustion. In other words: the bad type of tiredness.

With this type of tiredness, there’s no satisfaction, no pride, no sense of a job well done. Only frustration. It’s a feeling of tightness in my chest, tense muscles, a lump in my throat, and heaviness throughout my entire body, which no amount of huge, exasperated sighs can shake. It’s the type of tiredness that causes me to go to bed without brushing and flossing my teeth, because I simply do not have the energy to do so (sorry if that is TMI). Or worse, to stay up until 2:00 or 3:00 in the morning because I don’t even have the energy to get up from the couch and go to bed. Pardon my French, but the bad kind of tiredness is, in short, when one feels like crap.

Unfortunately, I’ve been having a lot of the bad kind of tiredness lately. It started around mid-December and continues into 2025. As a result, I haven’t had the energy to blog as much as I’d like. (I’m sure I sound like a broken record when it comes to this subject.) However, the holiday season wasn’t entirely negative. I hope to soon have the energy to make a post with more details and photos of my holiday season.

bookmark_borderOne of the most despicable social media posts I’ve ever seen

Posted on by Marissa

I had a terrible day at work yesterday.

Some of it was caused by people messing up the displays that I am in charge of, requiring me to change the displays back to the correct products and put the correct signs back, which was more difficult than it sounds due to the fact that the sign storage area was completely disorganized, making it nearly impossible to find the signs that I needed. Some of it was caused by the fact that there were free chips and guac in the break room, causing the break room to be constantly packed with loudly talking people, which made it impossible for me to sit down and flip through the sign folders, made my break chaotic and overstimulating rather than relaxing, and prevented me from even getting any chips and guac, because too many people were standing around them.

But some of it was caused by the following Instagram post, which I had the misfortune of coming across before work and which made me feel so hurt and angry that I couldn’t get it out of my head:

“Hi, Lara Beitz. If you are autistic, you are handicapped/disabled. LSN* autistics are disabled, even if they “low support gets.” If autism does not disable you, you are not autistic (by definition). But there are MSN and HSN autistics, and if they “low support gets,” they “psych ward gets” or “death gets” because they cannot survive with your level of support. Do better.”

(link here)

* Instead of referring to autistic people as high-functioning or low-functioning, it has become politically correct to categorize autistic people based on the amount of support that they need. LSN is an abbreviation for “low support needs;” MSN for “medium support needs,” and HSN for “high support needs.” 

Let’s go over all the problems with this post one by one:

First of all, the creator of this post, whom I’ll refer to by his initials of AA, is attacking the autistic comedian Lara Beitz. This is the quote from Beitz that provoked AA’s attack:

“You’re not supposed to say high functioning anymore though. I like the term high functioning because it makes it sound like I’m high functioning, like that’s really positive, so what you’re supposed to call it now is ‘low support needs’ which I’m like that sounds so much more handicapped than ‘high functioning.’ Also I’m not ‘low support needs,’ I’m ‘low support gets.’ I’ve needed help my entire f***ing life, I just haven’t received any.”

As you can see, Beitz did not say or do anything wrong to merit this attack. There’s nothing wrong with the above quote from Beitz; I actually agree with and relate to it. Therefore, AA is viciously and nastily attacking someone for no reason. This is intrinsically immoral and bad for obvious reasons.

“If autism does not disable you, you are not autistic (by definition).” Wrong. Autism is a type of neurology, a type of brain wiring. Autistic people tend to have harder lives than neurotypical ones, because we are the minority, and therefore society is set up in a way that generally does not work well for us. Some autistic people consider themselves to be disabled, and some don’t. Of the autistic people who consider themselves disabled, many do not consider their autism itself to be disabling, but rather the fact that society is set up in a way that does not accommodate our needs. (This is the school of thought that I personally subscribe to.) Regardless of which of these categories one falls into, being disabled is not part of the definition of autism. So this statement is false.

This statement is also breathtakingly hurtful. According to AA’s definition, I would not qualify as autistic. As someone who began researching autism at age 16, received a formal diagnosis from a neuropsychologist at age 26 (I am now 35), has participated for years in social groups and activities for autistic people, worked in a coffee shop dedicated to providing employment opportunities for people with disabilities, and got a job at a grocery store through a state agency that helps people with disabilities find jobs, I’m pretty sure that I’m autistic. But yeah, it totally makes sense that a random person on the internet would be a better judge than a neuropsychologist with a PhD, my boss, my co-workers, a state agency, and myself, of whether or not I’m autistic.

“But there are MSN and HSN autistics, and if they ‘low support gets,’ they ‘psych ward gets’ or ‘death gets’ because they cannot survive with your level of support.” AA is seemingly trying to be clever with this wording, but the only thing he succeeds at is being juvenile and idiotic. More significantly, the point that AA is trying to make with this statement fails to hold up to even the most cursory logical scrutiny. According to Beitz’s account, she needs some level of support, and isn’t getting any. This is something that I really relate to, because it’s what I’ve experienced my entire life as well. Whereas AA, on the other hand, needs a medium level of support and is getting exactly that. It doesn’t take advanced math abilities to see that a person who needs a small amount of support but is getting zero, is actually in a more difficult position than a person who both needs and is getting a medium amount of support.

Even more significantly, AA’s statement completely invalidates, denies, and dismisses the experiences of high-functioning, LSN, late-diagnosed, and/or high-masking autistic people. It is, therefore, an unjust and completely unprovoked attack not only on Lara Beitz, but also on myself. The experience of being an autistic person who is held to the same standards as a neurotypical person is very real. And it’s something that AA knows nothing about, because he’s never had that experience. He’s been thought of as autistic for his entire life, and treated accordingly. The standards that he’s been held to are attainable for him, and he’s gotten the supports that he needs. Being unable to reveal your real self to others, being trapped in situations and relationships that don’t work for you but that you can see no way out of, being crushed under the weight of other people’s expectations… these experiences have caused me decades of very real pain and suffering. But AA doesn’t care about this. He doesn’t care about my viewpoint or my perspective, because they’re not the same as his. I have so much to say about my experiences as an autistic person forced to navigate a neurotypical world with no accommodations and no recognition, that I could easily write an entire book on this topic. But with one short, thoughtless post, AA dismisses my reality. He dismisses my struggles, my joy, my pain, my defeats, my triumphs, my life story in its entirety. Rather than having empathy for those who are different from him, AA has chosen to invalidate and deny our perspectives, viewpoints, experiences, and feelings.

AA might be interested to know that I spent several years with a level of pain so severe that it would not be an exaggeration to say that I was suicidal. It’s something of a miracle, in fact, that I am alive to tell about it. Therefore, I have two responses to AA’s claim that people like him “cannot survive with your level of support.” The first is that, well, I nearly didn’t. How dare you imply that my existence is a cakewalk when I’ve experienced anguish so severe that I nearly lost my life? The second is that, well, you don’t need to. So why are you complaining? AA does not need, and has never needed, to survive with my level of support (i.e. none), because he is in fact receiving a much higher level. What is the point of complaining that you could not survive with my level of support, when you are lucky enough – privileged enough, to use a term that AA and his ilk frequently throw around – not to need to? AA is getting the support that he needs; he has nothing to complain about.

And honestly, for AA to “psych ward get” or “death get” (as he so eloquently puts it) wouldn’t be the worst possible outcomes. Perhaps the former outcome would enable him to get the help that he clearly needs for the issues that have caused him to demonstrate such an abject lack of empathy for other people. And the latter outcome would at least improve the lives of others by relieving us of the possibility of being subjected to his vicious, callous, and heartless attacks in the future.

When I showed AA’s post to my dad, he was puzzled and asked what the point of making such a post could possibly be. What goal was AA trying to accomplish? I thought about it for a second, and responded that people like AA probably wish to obtain more funding for services and supports. They probably feel that there isn’t enough assistance available for autistic people and resent the fact that any of this assistance at all goes to LSN people, believing instead that all of it should go to MSN and HSN people like themselves.

But then I thought about it some more and arrived at a deeper answer. More than just funding, what people like AA want is for everyone who is not like them to either grovel at their feet, or be obliterated from the earth. They want everyone who has different perspectives, viewpoints, life experiences, and feelings than they do, to shut up. They want others to give up their own perspectives, silence themselves, and dedicate themselves solely to amplifying their voices, giving them a platform, lifting them up. They want their perspectives, viewpoints, life experiences, and feelings to be the only ones voiced, the only ones expressed, the only ones acknowledged. In AA’s eyes, my perspective, my viewpoint, my experiences, and my feelings do not matter. In AA’s eyes, my pain, my suffering, my struggles, and the obstacles that I’ve had to overcome, are nothing. In the eyes of people like AA, the only perspectives, viewpoints, life experiences, and feelings that matter are their own.

And then I thought about it even more and came to an even deeper conclusion. What people like AA want is to hurt other people. Specifically, to hurt other autistic people as badly as possible by insulting us, shaming us, attacking us, dismissing our experiences, and denying the validity of our pain. If you think that sounds messed up, that’s because it is.

This post hurt me. AA’s actions have inflicted real harm and real pain on another human being, namely myself. (But of course, that doesn’t matter, because the only feelings that matter are those of AA and people like him.) This is not something to be proud of, it is not an instance of something that is “uncomfortable to hear” but “needs to be said,” and it is not acceptable. This post demonstrates a lack of logic and a lack of empathy. And there is nothing positive about that. Causing harm and pain to other people who have done nothing wrong is immoral. What is the point of having an online autistic community if its members dedicate themselves to actively and aggressively hurting other autistic people? The autistic community should be a place where autistic people can come for acceptance. support, and, well, community. Members of this community should embrace all of the varied ways that autism can present, and should try to learn from others’ experiences, rather than viciously attacking others whose experience of autism differs from their own.

In conclusion, this post is disgraceful, shameful, and despicable. Both this post and its creator are mean, nasty, vicious, and cruel. AA needs to look in the mirror and really reflect on why he chooses to be part of the online autistic community when his only goal in doing so is, seemingly, to inflict harm and pain on other autistic people. Other autistic people who – I’m going to come right out and say it, because it’s the truth – lead harder lives than he does.

AA, and not Lara, is the one who truly needs to “do better.”

bookmark_borderMy heart hurts…

Posted on by Marissa

Today, my heart hurts. I feel exhausted, drained, and demoralized. I feel weak and tired, my brain feels dull, foggy, and slow, and my body feels heavy.

I have not been blogging as much as I would like. For the entire month of September, I did not blog at all, and so far in October, I have done so only sporadically. This is beyond frustrating, because there are so many thoughts in my brain that I want and need to express. But I can’t. I simply do not have the time, or the energy. Things have not been going well for me. I have been experiencing autistic burnout for four and a half years, and for the past two and a half months it has been particularly severe. 

The Olympics marked the beginning of this bad stretch of time. Sports have traditionally been one of my biggest special interests, so this was something that I had been eagerly anticipating. But NBC’s coverage decisions meant that I was unable to watch all of the coverage that I needed to. There was simply too much of it. And so what I thought would be both a challenging and exciting experience turned into a nightmare of overstimulation, information overload, mental exhaustion, and sleep deprivation. I managed to alter my goals and mindset regarding the Olympics, allowing me to endure the experience. This was extremely difficult for me as an autistic person, and is something that I am proud of myself for doing. But being proud of oneself for accomplishing something is not the same as having a positive experience. The Olympics turned out to be something that I needed to endure, rather than something enjoyable and rewarding. And that is not great, to put it mildly. Not only was I subjected to an inordinate amount of stress and exhaustion, but I was denied the rewarding experience that I was picturing and expecting. 

Also starting around this time, I began to feel vaguely physically unwell, which continues to this day. I have been suffering from a runny and stuffy nose, sore and scratchy throat, cough, itchy and watery eyes, headaches, earaches, and low-grade fevers. These symptoms come and go, waning and giving me hope that they will finally be gone, only come roaring back the following day. These symptoms haven’t reached a level of severity that would cause me to miss work or cancel any activities that I had committed to, but they have caused me to be constantly miserable. It has really taken a toll on my mental health and quality of life. 

Throughout August and September, I also had an inordinate amount of difficult interpersonal situations put onto my plate to deal with. Texts and messages that I didn’t know how to respond to, uncomfortable phone calls that I had to make, requests for social get-togethers that I knew I wouldn’t be able to do but that were excruciatingly painful to say no to. I have made the decision to quit socializing, because friendships simply don’t work for me given my autism and history of trauma involving interpersonal situations. But people continue to ask me to socialize with them, and every time they do, the wound is ripped open and I essentially am forced to make the painful decision to quit socializing anew. These situations have been emotionally exhausting and have used up a lot of mental resources.

Because of my overall level of exhaustion, I have been sleeping very late, even when I go to bed relatively early. As a result, I essentially don’t have time to do anything other than getting ready for work, and working. I don’t have time to take walks, I don’t have time to run errands, and I don’t have time for writing. Such an enormous amount of time is spent sleeping, that there is no time for anything else. Despite this, I wake up exhausted, and it is painful to wrench myself out of bed. In other words, even this enormous amount of time spent sleeping is not enough. Most likely, no amount of sleep would be enough to make me feel refreshed and well-rested. Normally, I enjoy walking around the pond near my house, in the woods, and in the center of town, looking at the beautiful fall foliage and photographing it. But I haven’t really had time to do this. The fall season is passing me by, and I’m not able to enjoy or experience it in any meaningful sense. This is a depressing way to live. In fact, I would argue that it does not quality as truly living, but merely as existing. 

I’ve also had numerous workdays get screwed up. My work is usually a source of stability and routine. I can focus on something concrete, such as ringing up customers’ groceries at the cash register, bagging the groceries, collecting shopping carts in the parking lot, or stocking groceries in a section of the store. But I’ve been subjected to various instances that have turned my job into a source of dysregulation and chaos. On multiple occasions, I’ve been trapped with slow-walking and talkative co-workers during the commute home, causing me to miss the train and preventing me from doing Italian lessons on my phone. One night, the staff was asked to stay an hour late (not a problem in itself) and a co-worker pressured me into getting a ride home with another co-worker rather than taking the train as I usually do (apparently thinking, for some reason, that the fact that it was an hour later made it unsafe to take the train). Another night, the manager didn’t give clear instructions, so I didn’t know what section of the store I was supposed to work on or when I was supposed to stop. And another night, too much frozen food was ordered, so I ended my shift by pushing boxes of food with all my might in a (futile) attempt to force them into the completely packed walk-in freezer.

Worst of all, when my manager was explaining how the Columbus Day holiday would affect projected sales, one of my co-workers interrupted to “correct” the holiday name to “Indigenous Peoples’ Day.” When my manager responded that people could call the holiday whatever they wanted to, another co-worker interjected, “As long as you don’t call it Columbus Day! Anything but Columbus Day!” If you know anything of my feelings about Christopher Columbus, you won’t be surprised to learn that this caused me to be flooded with excruciating, agonizing pain. And it brings me to the next cause of this recent exacerbation of autistic burnout: Columbus Day.

Given that I love Christopher Columbus more than anything in the world, Columbus Day should be the best day of the year for me, or at least a better than average one. But this year at least, it was horrible. I attended and sold my artwork at an Italian festival, which should have been fun and exciting. However, I had to stay up late the night before in order to get my work ready, it was cold, rainy, and windy (all things that severely bother my sensory sensitivities), and a friend came by to sit at my table and help break it down at the end of the event (despite the fact that I had previously told her, as nicely as possible, that I did not need or want her help). This all amounted to an uncomfortable, angering, and draining experience. Instead of celebrating and honoring the man I love, I spent the day coping with an experience that was exhausting, out of control, and chaotic. 

Plus, as has been the case every year starting in 2020, various people, companies, and organizations used the occasion to attack Columbus, and therefore myself. I am too mentally exhausted and in pain to describe these things in detail, but the culprits include various cities and towns, American Gril (yes, the doll company), and every museum and park in Boston. Every time I see the words, “Indigenous Peoples’ Day,” I am filled with agonizing pain. There are no words that can adequately express the hurt of seeing other people’s perspectives validated, suffering acknowledged, cultures celebrated, and voices heard, while my perspective is dismissed, my suffering ignored, my culture shamed and condemned, and my words ridiculed. No matter how hard I try, I cannot force others to listen to my ideas, understand my point of view, or empathize with my pain. When you combine this with all the other things that I’ve described in this blog post, I feel beaten down. My spirit is crushed. So many things that used to give me pleasure have been taken away, contaminated, ruined. There is almost nothing that I can direct my time, energy, or attention towards that does not cause excruciating pain. It is difficult for me to see a path forward.

I am trying to keep the faith. I am trying to remind myself that I have felt this way before and have survived, and have returned to a state of happiness again. I am trying to remind myself that at some point in the future, my body will have more energy, and my brain will once again feel sharp. But right now, that isn’t the case. Right now, everything feels heavy, dark, and hopeless. Right now, everything hurts.

bookmark_borderThe agony and the ecstasy of the Olympics for me as an autistic person

Posted on by Marissa

For me as an autistic person, the Olympics is one of the most exciting things in the world, and also one of the most torturous. Sports are one of my special interests, so one would think that the Olympics would be heaven for me, with two and a half weeks of non-stop coverage of gymnastics, swimming, diving, track and field, equestrian, fencing, shooting, and more. But this is the exact reason why the Olympics have the potential to become my own personal hell. A hell filled with overwhelm, stress, chaos, mental exhaustion, and information overload.

I will start by explaining why I love Olympic sports so much. I think what I like most about watching sports is that they have clear procedures, rules, and processes for determining the winner. Every sport has a system, whether that consists of judges giving scores for each competitor’s routine, a horse and rider receiving faults for each rail they knock down, or simply a clock determining who crosses the finish line first. No one knows in advance who the winner is going to be, but one can expect that the competition will unfold according to a familiar and predictable process. For me, watching a sports competition means watching it in its entirety, from beginning to end. It means watching all the coverage that is available. I love to watch the entire process unfold, from the opening video montage, to the heats with dozens of competitors that no one has ever heard of, to the semifinals, to the finals, to the post-race interviews of the winner(s).

As anyone who has glimpsed the Olympics broadcast schedule knows, the sheer amount of coverage is so huge that it is impossible for one person to watch it all. And this makes my brain go crazy. I have a perfectionistic, completionist mindset, to put it mildly. I am a very all-or-nothing person. If I am into something, I tend to become really obsessed with it. If I like something, I am not content merely to have a little bit of it; I want all of it. I find it preferable not to do something at all, than to do it in a way that falls short of my standards of completeness. So when the Olympics come around every two years, I don’t want to miss any of the coverage. I want to watch it all. But because of the enormous amount of coverage, missing some of it is unavoidable. The result is having to make excruciating, nearly impossible decisions about which events to watch and which to miss.

Leading up to this Olympics, I knew that it was going to be a challenge. I knew that difficult decisions would need to be made. I knew that I would likely need to set my alarm in the morning, that I might need to record certain events to watch later, and that I would have to minimize (and carefully time) outings outside of my house. But I was up for a challenge. I was mentally prepared, and I was excited. I had spent hours upon hours catching up on all of the Olympic trials coverage that I had missed over the past couple of months due to my work schedule. I had worked hard to put myself in a position that would give me the best possible chance at success.

Watching the hour-long intro show that aired before the very first events of the Games – preliminary soccer matches that took place two days before the opening ceremony – I was happy and optimistic. The video montages were exciting and the commentary interesting. Everything was elegant and appealing, from the NBC studio in Paris, to the pictograms that represent each sport, to the fonts and graphics used during the broadcast. It was particularly cool to see images of the statues, monuments, and famous buildings in Paris, and I was hopeful that watching the Games unfold among these iconic landmarks would be somewhat healing after the traumatic events involving statues that I’ve detailed at length in previous blog posts. 

But then, shortly before the opening ceremony on Friday, June 26, I checked the TV listings for the following day (Saturday) in preparation for planning a watching strategy. And what I saw made me sick to my stomach. Watching these Olympics was not going to be a challenge; it was going to be impossible.

The competitions started as early as 3:30 in the morning and continued throughout the entire morning and afternoon, usually on 3 or even 4 networks at once. The idea of waking up at 3:30 seemed ridiculous, but recording these events would not work either, because there was no window of sports-free time later in the day in which to watch them. And missing out on these events would be completely unacceptable. The sports taking place at ungodly hours weren’t limited to the ones that I (comparatively) don’t care much about, such as soccer, handball, rugby, cycling, table tennis, badminton, and wrestling. Nor were they merely “borderline” sports like rowing, kayaking, and archery. The ridiculously early sports included my favorites, such as equestrian, diving, swimming, and gymnastics. Missing those would defeat the entire purpose of watching the Olympics.

In other words, even after narrowing down the sports as much as I possibly could, even after eliminating all but the absolute must-watch events… the amount was still not even close to being manageable. 

So my brain exploded. I screamed at the top of my lungs, again and again and again. I pounded my feet on the floor. I punched the walls and the couch. I threw various objects. 

After this explosion of rage, I made the decision to boycott the Olympics. Given that NBC’s coverage choices made it impossible for me to watch in a way that was acceptable to me, I preferred not to watch at all. I was so angry that the mere thought of the Olympics filled me with disgust. 

The following day, I woke up feeling like someone was hammering an ice pick into my forehead. It was the worst pain I have ever experienced. Not only was I completely unable to function, but merely existing was agony. The pain made it impossible to sleep, and neither Tylenol nor aspirin did anything to relieve it. The only activity that was possible for me to do was lying in bed in excruciating pain. The entire day was essentially lost. Watching the Olympics, even if I had changed my mind and decided to do so after all, was impossible. 

But as night fell, the agony finally abated. I realized that the Olympics primetime show was starting soon. And I decided to put it on. Watching the abridged versions of the day’s competitions, knowing that I had missed out on the full, live versions, was a foreign and bizarre experience for me. It was simultaneously torturous and interesting and enjoyable at the same time.

When the broadcast ended, I pulled up the TV listings for the following day. The feelings of overwhelm and frustration started to return. Gymnastics and equestrian were again slated for 4:00 in the morning, followed shortly thereafter by swimming and then archery and then more swimming. I could set my alarm for 6:00 and miss only one session of gymnastics qualifying, I thought to myself. I could set it for 8:00 and miss two sessions but at least catch archery. Or I could set it for 10:15 to ensure that I at least woke up in time for the second session of swimming. I went to bed feeling unsettled, but not nearly as out-of-control as I had felt the night before. 

Miraculously, I woke up, without having set an alarm, at 7:30. Turning on the TV mid-competition, and therefore missing the beginning, is completely at odds with the way that my brain works, but that is exactly what I did. With the early morning sun casting beams of light across my living room, I watched the heats of the men’s individual medley and heard the crowd’s chanting for Leon Marchand reverberate through the stadium. Over the next few hours, I flipped back and forth between channels, catching portions of swimming, gymnastics, archery, equestrian, shooting, basketball, canoe slalom, and skateboarding.

It was painful to watch the third subdivision of women’s gymnastics qualifications, knowing that I had missed the first two, and it was similarly torturous to watch the cross-country equestrian competition, knowing that I had missed the dressage round in which a competitor had set a record for the best-ever score. But I enjoyed getting to experience a variety of different sports, and getting to watch them live, at the time that they were actually unfolding. I enjoyed switching from channel to channel to check out what was happening. I enjoyed watching gymnasts of all different countries, some of whom I’m not familiar with, and some of whom I recognized because they competed in the NCAA. I liked the introductory video to the equestrian competition, which explained the scoring system. I enjoyed the fencing competition, held in the magnificent, theater-like venue called the Grand Palais. And I even enjoyed catching a few minutes of skateboarding and basketball, even though these are not sports that I’m usually super interested in. 

It turns out that losing an entire day, although excruciating in terms of both the physical pain and the sports missed, was necessary. The way that I had been approaching things was not working, and my body and brain forced me to stop. Losing an entire day allowed me to reset, to approach the Olympics with a completely different attitude, and to rediscover what had made sports my special interest in the first place.

Because in addition to the fact that they have systems and rules, I love sports because they make me feel connected to the world around me. I love to watch competitions unfold in real time, knowing that others all over the world are watching them as well. I love that no one knows what the outcome is going to be, and that everyone simultaneously finds out the result in real time. It makes me happy to know that I am watching sports together with millions of people, even though I don’t know them and am not interacting with them

With previous Olympics, I watched as many live sports as humanly possible, and I recorded the rest. Inevitably, the recordings would pile up to a point where I felt that I had no choice but to stay up late trying to get them watched. Inevitably, the second round of a competition would come on before I had a chance to watch the recording of the first round, and I would have to either watch the rounds out of order, or record the second round too. Inevitably, I would begin to cram in a few minutes of recordings here and there whenever I had a spare moment, causing me to miss the beginnings of live competitions when they invariably started earlier than I expected, and also causing me to miss out on the experience of watching Olympic sports that I wouldn’t necessarily have sought out. In general, this way of watching the Olympics created a jumbled, chaotic sports mess that was no longer enjoyable. The sports had gradually transformed over the years, from something fun into something that needed to get watched, a task that had to get done, an item on my to-do list that I aimed to get rid of as quickly as possible. Paradoxically, as I became more and more into sports, the thing that made me enjoy sports in the first place, had been lost.

Over the past couple of weeks, I have been getting up at a reasonable hour and simply watching whichever sports I can, while forcing myself to be okay with missing the rest. Watching the Olympics with this new philosophy has been simultaneously agonizing and exhilarating. Doing anything in a way that falls short of perfection is completely at odds with the way that my brain works. It is a situation in which no option feels right, but I feel that this one is better than the alternatives of either missing out on the Games entirely, or completely destroying both my sleep schedule and my brain in a futile attempt to catch everything. I am proud of myself for being able to adopt this new approach, because I know that the past version of me wouldn’t be able to do so. I am not an Olympic athlete, but in a way, I am doing the impossible every day of these Olympics, and I think that is pretty impressive.

bookmark_borderRevere Beach Sand Sculpting Festival 2024

Posted on by Marissa

Last week, I visited and took photos of the sand sculptures at Revere Beach. A sand sculpting festival and competition takes place there every year in July. Due to my job which requires working on weekends, I wasn’t able to attend the festival itself, which took place Friday through Sunday. But I do enjoy looking at the sand sculptures, so I decided to visit them on Wednesday morning.

I was concerned that the sculptures would have deteriorated by that point, three days after they were built. I was also concerned that the beach would be windy, as it often is. As a person on the autism spectrum, I have sensory sensitivities to wind, which have become more severe in recent years, and can cause spending time outside to become excruciating. The wind was quite painful during the walk from my house to the train station, which boded ill. Plus, people began getting on my nerves during the commute by doing various annoying things such as invading my personal space, blocking my way, and getting onto the train before I had a chance to step off. I was starting to regret making the journey.

But as I crossed the bridge from the train station to the beach, I was pleasantly surprised to find that there was almost zero wind. The day was cloudy, cool, muggy, and still. I was equally pleased to find that the sand sculptures were in pristine condition. They had not deteriorated at all, and were magnificent to behold, as they are every year. They were located conveniently between the Wonderland and Revere Beach MBTA stations, making for an easy walk. Despite it being three days after the festival, there were lots of people milling about and admiring the sculptures, but not so many that it was impossible to move about freely or get good photos (as is often the case during the festival). Overall, it was a successful and pleasant experience, and I am glad that I went.

Among my favorites were the cat and mice, and the chameleon. Hopefully you enjoy the photos below:

You can view more photos on my photography website here.

bookmark_borderUnjustified and baseless belligerence

Posted on by Marissa

I recently saw a social media post that said: 

“I hate when people say autism doesn’t have a look. Cause for many of us, we look autistic… Stop trying to erase visibly autistic people.”

The post listed things such as flapping hands, stomping feet, screaming loudly, and vocal stimming as attributes that make a person allegedly look autistic.

There is a problem with this logic. The things listed in the post, although characteristic of autism, don’t have anything to do with a person’s look. The things listed are behaviors and mannerisms, not attributes of a person’s appearance. 

A person’s look refers to attributes such as hair color, hair length, hair texture, eye color, skin color, height, build, etc. A person’s behaviors and mannerisms, such as flapping hands, stomping feet, screaming loudly, and vocal stimming, are not part of their look, per se. 

So yes, it’s absolutely true that there are behaviors and mannerisms associated with autistic people. Autism, by definition, is a collection of traits, and some of these traits have external manifestations. It’s also true that autistic people vary in their ability and willingness to hide (“mask”) their traits by refraining from the associated behaviors and mannerisms.

But this is an entirely separate thing from a person’s “look.” 

Some people act, and behave, autistically. Some people have behaviors and mannerisms that make them obviously autistic. But that’s not the same thing as looking autistic. Autistic people can have any hair color, hair length, hair texture, eye color, skin color, height, or build. Therefore, contrary to what is claimed in the post, autism does not, in fact, have a look. 

Honestly, posts like this make me angry and exemplify what is wrong with the online autistic community. This post is problematic not just because it is completely false and based on an incorrect understanding of what words mean, but also because of its belligerence and nastiness.

The person who made this post is literally expressing hate towards people who use the word “look” correctly by claiming, correctly, that autism does not have a look. The person who made this post is accusing others of “trying to erase visibly autistic people,” when all we are doing is using words correctly.

Using words correctly, as opposed to incorrectly, does not constitute erasing anyone’s existence, and it does not make a person deserving of hate. The belligerence and nastiness expressed in this post have no justification, because they are aimed at people who have done nothing wrong whatsoever. 

Posts like this are not harmless, not merely illogical and wrong. They inflict pain on innocent people. Even though this post was not addressed to me specifically, it hurts to be subjected to hate and false accusations merely for using words correctly. It hurts that the autistic community is filled with so much unjustified and baseless belligerence, directed towards people who have done nothing to deserve it.

bookmark_borderA meltdown caused by blogging time being cut short…

Posted on by Marissa

Today, I feel horrible. I woke up to find little pieces of paper – the remnants of the envelopes and advertising that had come in the mail – still scattered all over the floor. My throat is horse and my head achy from screaming, again and again, at the top of my lungs. My hand is bloody and swollen from punching the granite kitchen counter. My feet and ankles are sore from stomping again and again on the floor. I am concerned that the foundation of my house might be damaged from all the stomping, and that my hands might become permanently damaged from these repeated injuries, if they are not already. This is a particularly disturbing possibility given that my job centers on picking up, lifting, and handling objects with my hands. I feel guilty and demoralized. I’m angry – angry at others, angry at myself, angry that instances like these keep happening. My body feels heavy and tired. My chest is tight, my arms and legs leaden, my stomach twisted in knots.

Yesterday, I had a meltdown because my blogging time was abruptly cut short.

I was at my parents’ house, and the plan was to watch Survivor, as well as the Bruins game. Survivor was on from 8:00 to 9:30, and the Bruins game started at 7:30. So, in addition to being able to watch a half hour of the game before Survivor, we would also be able to watch the end of the game, because it would almost certainly still be going when Survivor ended. Then, after the game ended, I would go home. My parents and I all agreed to this plan, and I was looking forward to the night of TV watching.

Personally, I never just sit and watch TV. It doesn’t work for me to sit and passively watch without anything to occupy my hands. Plus, I live with a constant backlog of topics that I want to blog about, making it foolish not to take advantage of every potential chunk of blogging time that I get. So whenever I am watching a TV show or sports game, I blog at the same time. Usually, it works well.

The thing about blogging is that it is highly momentum-dependent. It’s not the type of task that you can do a little bit of whenever you have some time. Blogging works much better when you have large, uninterrupted chunks of time, because it is mentally laborious and requires focus and concentration. Usually, once I sit down to work on a blog post, it takes me some time to get momentum going, to get into a state of flow. Once I am into this flow state, I am very productive. The writing flows effortlessly. I can keep writing and writing and not get tired at all. Because I work full time and own a home, I don’t get a lot of opportunities to get into this flow state. And when my momentum is interrupted, it’s difficult to get it back.

Yesterday, when Survivor ended and my dad changed the channel to the game, the third period was just beginning, and the Bruins were losing 3-1. My dad asked me what I wanted to do. I was surprised, because I thought everyone had agreed to the plan of watching the rest of the Bruins game after Survivor. Why would he be asking me what we should do, when the answer to that question had already been decided upon? *

Plus, for the preceding two hours, my blogging hadn’t been going smoothly. I was getting bogged down. What I thought would be a quick, easy blog post turned out to be more complicated and difficult than I had anticipated. But as Survivor was ending, I was finally making great progress. I was finally getting into a flow state, and finally starting to feel good about how the writing was going. My dad’s suggestion to leave came at the worst possible time.

My dad indicated that he was okay with staying for the rest of the game, unless the Panthers scored another goal, making the score even more lopsided. Naturally, about 30 seconds later, the Panthers scored. And so my blogging time was abruptly cut short. The momentum that had just started to get going, came to a screeching halt. **

There was something about having my blogging time cut short, without warning, that made my brain explode. It’s not just the fact that I had to leave at 9:30 as opposed to approximately 10:00. It’s the fact that I was expecting to have until 10:00, only to find out, without advance notice, hat I only had until 9:30. It’s the fact that I was counting on having until 10:00, only to find out at 9:30 that I was expected to leave immediately. I hadn’t gotten my belongings together or put my socks or shoes on, and I had been planning on getting another helping of ice cream and another helping of water. I wasn’t prepared to leave, because that’s not what I was planning on. I thought that I had an additional half hour of time left. It was another instance of the type that I’ve written about before – an instance in which things did not unfold according to the picture I had in my head. ***

And so I exploded.

I simultaneously knew that my anger was irrational, and lacked any ability whatsoever to stop it.

The rational part of my mind was fully aware that it did not make sense to be that angry at something so relatively unimportant. The rational part of my mind was even aware that if I hadn’t gotten so angry, I would have been able to open up my computer upon arriving home, resume working on the blog post, and possibly finish it, all while watching the end of the Bruins game on my own TV. In other words, if I hadn’t gotten so angry, I would have been able to avoid the very outcome (the premature end to my blogging time) that I was so angry about.

But none of this knowledge had any power to make me any less angry. Rage coursed like molten lava through my veins, overtaking my mind and body and soul. The anger was so strong that nothing could stand in its way. It took over my entire consciousness. Logic was feeble and powerless in the face of the overwhelming, uncontrollable fury. Like an erupting volcano, or an exploding bomb, once the anger started, there was no stopping it.

So I was completely consumed by anger, while simultaneously knowing that it was irrational. I feel guilty, because my dad didn’t really do anything wrong. One day my parents will be gone, and I don’t want incidents like this to be the main thing that I remember from my time with them. I feel frustrated and demoralized, because I’ve tried so hard to prevent these types of incidents from happening, yet they still keep happening. I feel conflicted, because I truly believe that autism is a gift and a superpower. I’m proud that I have it, I don’t consider it a disorder, and I don’t wish to be neurotypical. But these beliefs seem to be incompatible with the fact that my autism causes me to feel and behave in ways that I know – at the exact same time that I am feeling in behaving in these ways – are irrational.

I know that my ability, and need, to hyperfocus are part of my autism. I know that it is part of my autism to have problems with transitioning from one activity to another, and with unexpected changes to my plans. It is due to autism that I need such copious amounts of blogging time, due to autism that it causes me such distress to have that time interrupted, and due to autism that once I get into a flow state it is difficult for me to stop.

Perhaps the reason why my anger exploded so severely yesterday is because I initially tried to suppress it. I reluctantly agreed to my dad’s request to leave after the Panthers’ 4th goal, pretending that it was okay with me, even though it wasn’t. I didn’t want to inconvenience him, I didn’t want to be high-maintenance, and I didn’t want to cause a conflict. It wasn’t until I got back to my house and shut the door behind me, that the anger exploded. Perhaps I should accept my needs as an autistic person, even if they seem unreasonable to others, rather than suppressing them. Using willpower and self-discipline, forcing myself to tolerate things that upset me, might work in the short term but are not long-term solutions. Acting as if you do not have the needs that you have, does not cause you to stop having those needs. It causes the needs to go chronically unmet. And that will eventually result in an explosion.

* When my dad and I discussed this today, he explained that for him, it’s not enjoyable to watch a game when his team has no chance of winning. He would rather watch a competitive game between two teams that he doesn’t care about. For me, although I prefer the Bruins to win, the score has no impact on whether or not I want to watch the game. The important part of watching the game, for me, is watching the athletes warm up, make their entrance, go out through the tunnel, etc. and watching the video montages and the interviews before and after the game. All of these things take place regardless of what the score of the game is. And all this is, of course, in addition to the blogging that I was counting on doing while watching the game.

** “Couldn’t you just finish the blog post at home?” you might be thinking. But unfortunately, the mere process of having to pack up my laptop, put my shoes and socks and jacket and hat on, get into the car, get out of the car, check my mail, unlock my door, and unpack my stuff again, is enough to shatter my concentration and ruin my blogging momentum. More often than not, once my momentum is brought to a screeching halt by the process of leaving, it is sufficiently late that it doesn’t make sense to start up again, and so my blogging time for the day is done. And also more often than not, the following morning is filled with various tasks, and then I have to go to work, and then I get home too late to start blogging, so I don’t end up having another opportunity to blog until my next day off.

*** There were also a couple of other things weighing on my mind that may have contributed to why I became so angry. Recently, I made the decision to completely quit socializing (as radical as that may sound) but was second-guessing that decision because I heard about an all-you-can-eat ice cream event that actually sounded like it could be fun to go to with a particular group of friends. Additionally, two people have asked me to do drawings, which is flattering and awesome, but cuts into blogging time, making the blogging time while watching TV even more crucial.

bookmark_borderEmbracing imperfection

Posted on by Marissa

As a person on the autism spectrum, I have a tendency to be a perfectionist. I tend to have a picture in my head of how the day is going to go, and tend to become very upset if things do not go according to how I pictured them. I struggle with being flexible, and tend to feel that if things do not go perfectly, then everything is a disaster and the day is ruined.

(Lately I had numerous instances of things getting messed up and not going according to plan, which I wrote about here.)

A couple days ago, however, I had some success with embracing imperfection. 

It was a warm and sunny morning, and I decided to take a walk around the pond near my house. The trees were still blooming with beautiful white and pink flowers. After my camera had inexplicably decided not to work, I had done some troubleshooting, and I thought that I had fixed the problem. So I brought it along to take photos. Imagine my shock and dismay when, again, the shutter button refused to work, in exactly the same way it had earlier! I angrily trudged home and sulked around. But then, a little while later, I decided to return to the pond and take pictures with my phone. 

Although I much prefer to use a “real” camera, it was better than nothing.

I enjoyed being outside in the beautiful weather and looking at the trees, flowers, ducks, geese, and trucks rumbling to and from the construction site at the top of the hill. 

Farther away from my house, there is a park with a World War I memorial, which is decorated with different flowers depending on the season. I knew from seeing the park in passing that there were currently bright yellow daffodils and beautiful tulips planted there, but I hadn’t had time to actually stop and get close-up to take photos. A sufficient amount of time had gone by that I figured the daffodils would be wilted and sad-looking. But after my walk around the pond, I had extra time, so I decided to make the walk to the park anyways. To my surprise, the flowers, even though they weren’t in absolutely pristine condition, still looked beautiful.

And even though I was stuck using my phone as opposed to my “real” camera, I still got some pretty good photos. 

The moral of the story: An imperfect day can still be a good one. “Plan B” is not as good as “Plan A,” but it is better than nothing, and it is certainly better than giving up on the day entirely. 

bookmark_borderA week with too many things going wrong

Posted on by Marissa

During the past week or so, too many things have been going wrong. Too many mistakes, fails, mishaps, fiascos. None of the things are particularly serious in themselves, but combined, they feel like an avalanche, a cascade, a tidal wave of badness.

It started with a UPS fiasco. I bought a retired American Girl doll named Caroline from an Amazon seller, but the UPS driver could not find my house. I received an email prompting me to go to the UPS website to either confirm or correct my address, and I confirmed that I had entered my address correctly. The same exact thing, however, happened again the following day. I emailed UPS to give them directions to my house, but the same thing happened yet again! So I called them (something that is very difficult for me due to my shyness). The driver was finally able to find my house, but not until I had already left for work (I work afternoons / evenings). This would be fine, except for the fact that a signature was required for the delivery. So UPS informed me that they were sending my package to a convenience store that doubles as a UPS access point. I figured, therefore, that I would be able pick up my package up the next day before work, but it didn’t actually get to the convenience store until late afternoon. So I had to wait until the day after that. On that day, as I was about to leave for the convenience store, my mom texted, much earlier than I was anticipating, to let me know that she was ready to meet for lunch before work. So I had to wait another day. Finally, I made it to the convenience store and excitedly told the cashier I was there to pick up a UPS package. She asked for my ID, which, to my dismay, I realized I did not have. (I had brought my credit card, debit card, and subway pass, just in case I might need them, but it didn’t occur to me to bring my license.) Because an ID was required to pick up my package, I returned home empty-handed, having made the 40-minute round trip walk for nothing.

(Wow, that paragraph turned out to be really long!)

The fiascos continued from that point, with the following being a few examples:

  • When I went to Starbucks before work, they got my drink wrong, giving me a smaller size than what I had paid for. I brought it back (difficult for me due to my shyness) and they got it wrong again!
  • My neighbor called me, texted me, and then began banging on my door all while I was in the middle of a therapy appointment via zoom. I was having tree work done in my yard, and feared that something seriously bad had happened, such as a tree falling on my neighbor’s house and destroying it. I didn’t know whether to continue with the therapy appointment or to tell my therapist that an emergency was happening and that I had to go. I opted for the first option, but was so distracted that I wasn’t able to absorb anything my therapist was saying. It turned out that my neighbor’s issue was not urgent or time-sensitive at all.
  • I was asked to work an overnight shift, and my parents and I made plans to have dinner at a nearby restaurant before work, something that I really enjoy but don’t often get to do because I usually work at dinnertime. I packed a bag of the things that I would need for work and put it in the trunk of my mom’s car. Before dinner, I worked out on my parents’ exercise bike (which I use sometimes because I don’t own one myself). We got into my dad’s car, drove to the restaurant, and parked outside it. I opened the trunk and was appalled to find no bag inside. Neither my parents nor I put two and two together to realize that because the car that was used to drive from my house to my parents’ house was a different car than the one used to drive from my parents’ house to the restaurant, I would need to move my bag from one trunk to the other. I ended up in tears and feeling so sick that I was unable to eat anything, and my dad ended up having to drive back to the house to get the bag.
  • At work, I was assigned a block of time to collect shopping carts in the parking lot, but I didn’t, because I didn’t know I was supposed to do that during that block of time. (I really enjoy collecting shopping carts too; I just completely forgot that I was supposed to do it.)
  • I decided to walk around the pond near my house and take photos of the pretty trees, because the white and pink flowers were beginning to bloom and looked really beautiful. When I reached the beautiful trees, I took my camera out of my purse, turned it on, composed the shot, and pushed the shutter button. Nothing happened. I pressed the shutter again and again, but no matter how hard I tried, my camera was unable to take photos.
  • An extremely embarrassing incident happened at work, in which I got one customer confused with another and said something to him that made absolutely no sense, because I thought he was the other customer.

None of these things are the end of the world, exactly, but with so many of them happening within a relatively short amount of time, I am stressed, angry with myself, and filled with self-doubt. My life has been filled recently with one setback after another, and I haven’t been able to fully recover from each setback before the next one happens. I keep getting knocked off-balance, and there is no time to re-stabilize before I am knocked off balance again.

Some of these fiascos are just bad luck (e.g. Starbucks, my neighbor, my camera), while others (not bringing my license, failing to ensure that my bag was in the correct trunk, mixing up my work schedule, mixing up two customers) are arguably my fault.

The fact that I am on the autism spectrum relates to this string of fiascos in two ways: first because my brain is more likely to fail at certain types of tasks, and also because I tend to become more upset than the average person when a relatively minor fiasco happens.

I have a very high IQ, and my brain can do many things that the average person’s can’t. But I also have a disability, namely autism. Although I excel at math, reading comprehension, memorizing facts, and understanding complicated logical concepts, I struggle with things that most people consider to be “common sense.” I tend to forget / misplace / lose track of things; I tend to do badly with social interaction, which includes recognizing and remembering people; I tend in general to fail at things that others find simple.

I also tend to become completely unglued when an unexpected problem occurs.

As I exited the convenience store and walked, dazed, through the parking lot, I was overwhelmed with anger and frustration (at myself, not at the cashier, because the ID requirement logically makes sense). I could feel heat rushing through my body. It felt like the world was spinning around me and I was lost at sea without a paddle, buffeted about by the waves. Even though I knew logically that nothing disastrous had happened – there was nothing time-sensitive within the package, and I could go back and pick it up the following day – I was overwhelmed with emotional upset.

Similarly, the moment I discovered that my camera was inexplicably not working, I was filled with rage so strong that I wanted to kick the nearby wooden bench and smash it to pieces. As I repeatedly turned my camera off and back on again, scrolled through all the different menus trying to figure out what had caused the problem, and tried every possible combination of settings, a lump formed in my throat and tears came to my eyes. Despite knowing logically that I could take pictures with my phone instead, I was overwhelmed with emotional upset by the fact that I was expecting my camera to work the way that it usually does, and it didn’t do that.

The reason these types of things are so upsetting to me is because, as an autistic person, I start each day with a picture in my head of what is going to happen. I expect and need things to go according to this picture. When they fail to do so, my brain basically goes crazy.

In that moment outside the convenience store, all I could think about was that I had planned to pick up my package that day. Not the following day.

In that moment at the pond, all I could think about was that I had planned to walk around the pond and take pictures with my camera. Not with my phone.

I could not access logic in those moments, because I was so overwhelmed by the fact that things did not go according to the picture in my head. Knowing intellectually that the problem wasn’t a big deal didn’t make me feel any better. I couldn’t move on to alternative plans, such as picking up my package the next day or taking pictures with my phone, because my brain was stuck on the picture of how the day was supposed to go.

So over the past weeks I’ve been beating myself up, both about this series of fails and about my reaction to them. I know that I tend to lose track of simple things, so I use compensatory strategies such as setting reminders, using calendars and checklists, and double checking to make sure I haven’t forgotten anything. I know that I struggle with facial recognition, so I make a deliberate effort to remember people’s features, hats, and clothing items. I’ve been beating myself up about the fact that despite being aware of my weaknesses and taking measures to compensate for them, I still failed. And I know intellectually that picking up my package the next day and taking pictures with my phone are perfectly good options, so I’ve been beating myself up for emotionally falling to pieces over what are objectively minor setbacks.

I am generally perceived as being relatively “high-functioning” compared to other people on the spectrum, and other people with disabilities. I live by myself, I work full-time, I don’t go to a day program, and I don’t have a legal guardian or conservator. I take pride in these things and, quite frankly, want it to stay this way. It is important to me to live a life in which I move about freely and make my own decisions, as opposed to being supervised at all times and having my schedule and activities organized by someone else. I don’t want to be a burden, or a pain in the butt, to the people around me. I don’t want to be erupting in emotional outbursts, ruining dinner plans, requiring people to rescue me from crises, or disrupting people’s days with my needs. I want to be a competent person, both at my job and at the tasks that need to be done outside of work. I want to be a person who is calm, logical, and put-together. I want to be able to complete my activities of daily living independently. I don’t want to be dependent on others.

Weeks like this make me doubt myself – my own competence, my own capabilities, and my own ability to function in the world. Recently my new statues have arrived, something that I know intellectually is far more important than any of the fiascos that I’ve described. These past weeks should have been filled with joy and excitement, but instead they’ve been filled with emotional turmoil. Hopefully I will have a relatively fiasco-free stretch of days, and what I know intellectually to be true will also feel true emotionally.