I’m tired of being autistic

Posted on December 18, 2025 by C. M. Condo
Photo by Wesley Tingey on Unsplash

I know this won’t increase my popularity in the autism community, but I’ve been thinking it for a while now, so I might as well come out and say it: I am tired of being autistic.

Being autistic in our painfully neurotypical world is exhausting. Every aspect requires an extra investment of energy, emotional, physical, or both. I can never just be. I can never just think. I can never just act. This may seem like an exaggeration to a non-autistic person, but as other autistics will tell you, it’s really not.

I’m not talking about the kind of autism that is profound, often developmentally delayed, and a much greater drain on parents and caretakers. I’m talking about the high-masking (erroneously referred to as “high-functioning”) version, the one who appears normal under social scrutiny. That’s me. I’ve been masking for almost three decades.

When I first started, I was flailing, not knowing what was wrong with me other than the fact that something was certainly wrong with me, and my best efforts at hiding that involved mimicking other people with limited success. Thirty years later, my disguise extends to the physical as well, with facial expressions, eye contact, body language, and tone of voice, all the things that neurotypicals do automatically and naturally and automatically and naturally expect of other people. (To say they are neither automatic nor natural to me probably belabors the point.)

I can even perform the necessary indicators of empathy, as neurotypicals can’t see my real version. I’ve become, for all intents and purposes, a whole other person, a projected, opaque disguise that almost completely hides the autistic person inside it.

Autistic emotions are deep and encompassing, and we keep them beneath the surface so we aren’t immobilized by them. When I feel empathy for someone else, I have to perform it, or the other person won’t see it. Performing empathy is a two-pronged exercise: the first is calibrating the performance to the situation, and the second is protecting ourselves from being overwhelmed by the emotions we’re surfacing. It’s tiring, and all the more so because it feels so unnecessary to me, on the inside.

It’s all a performance, for me and autistics like me. The amount of neurotypical acting I have to do around other people burns me out. The simplest interactions with service people have to be carefully managed, so I don’t put them off and disincline them to help me. I can’t even do it when I’m actually angry. At that point, disguising is out of reach because I’m already exhausted and can’t put the mask back on until I’ve recharged.

I went to donate clothes the other day, and the worker at the donation site was one of those over-the-top, happy-to-be-alive, pushy kind of friendly people to whom a less enthusiastic response would have seemed rude. I spent a huge chunk of energy on that interaction even though it lasted less than a minute. I don’t think these individuals realize how much they’re demanding from the people around them to reflect their joie de vivre. I think it’s more rude than just being rude.

After a while, it feels like my entire existence is more effortful than it should be. I worry about my fatigue while wondering how much better I might feel if I didn’t have to put on this whole neurotypical facade every time I have an interaction with a non-autistic person. It’s a persistent drain on my energy and well-being that ought to be unnecessary but realistically isn’t.

Definitely going to lose more popularity here, but while I’m being brutally honest, neurotypical people are a pain in my ass. They tend to be hypersensitive, overemotional, and thin-skinned. Their feelings get bruised so easily that it seems impossible not to bruise them, like fruit, like an apple I accidentally dropped on the floor. I didn’t mean to drop your apple, I just had too many things in my hands. Like worrying about whether I’m fitting in to the narrow confines of acceptable behavior imposed by all these snowflakes who take everything personally, even if—often when—it has nothing to do with them at all.

Despite this oversensitivity, these same neurotypicals don’t take responsibility when they hurt my feelings, the autistic person’s feelings. Because they can’t see them, they think autistics don’t have the same emotions they do, even while they claim to “get it.” And that does hurt my feelings, even if I’m not making a performance out of it.

Why do I still bother to mask if it’s so thankless, you might be thinking? Because the cost of not masking is steep. Not only am I expending all of this extra effort to tiptoe around these neurotypical land mines, but I’m also responsible for repairing the damage from setting one off, even though I didn’t mean to and didn’t put it there and was surprised that place had one when I thought it didn’t.

This whole autism business is wearing me out. I try to come up with a bright side sometimes, but right now, I’m just tired of all of it and wish I could have a day or two where I could be myself and non-autistic people had to bend around me, instead of the other way around. Let someone else be tired for a change.

Posted in Setting 4 | Tagged , , , , , , | Leave a comment

the trouble with [autistic] tone

Posted on November 10, 2025 by C. M. Condo

As adept we get at hiding our autism, tone of voice is the only thing we can’t control

Photo by Milada Vigerova on Unsplash

Tone of voice is the one piece of neurotypical communication that autistics can’t reliably duplicate. We overact trying to mimic it, but we only know if it worked based on someone’s reaction. We can barely hear it in others, and never in ourselves. For me, an autistic woman, it is the most difficult and costly component of my disguise.

One of my cousins, a licensed therapist, was the first person I told about my autism diagnosis, back in 2015. Her prompt acceptance and understanding were a relief, and I’d come to lean on them in the years since. But last night, when I tentatively told her she’d been difficult to be around at a family vacation earlier this year, she disagreed, saying I was the one who had been difficult to be around all this time, and that she’d decided to set some boundaries.

To literal me, this was an odd definition of boundaries, but past telling her I didn’t get it, I didn’t make it a point of contention.

Or did I? Did she take me saying I didn’t understand as an insult? Like I was belittling her for doing it? It wasn’t intentional, of course, but once I factored my tone of voice into the equation, it went a long way in explaining why her version of our interactions was so different. To her, I was rude, cocky, and always had to have the last word, and had been for a long time.

As a kid, my family had been my only safe haven. Around them, I could express my real thoughts, words and actions without judgment. It was the only time I never had to hide my true self. It wasn’t until well into adulthood that I started masking around my folks, figuring they’d done their time dealing with me and deserved better moving forward. I masked for my other relatives, though I saw them infrequently.

The only person I didn’t mask around was this cousin. I had assumed I didn’t need to.

Last night, I found out just how wrong I’d been. She’d been taking my comments and behavior at face value. She had put up with my evident thoughtlessness, for shutting down argument, for casually dropping insulting comments, for years. That it wasn’t my intention meant nothing. I had cut her so often that, by now, everything I did was perceived through that lens.

As awful to me as previous run-ins about my tone with others were, this was much, much worse. I’m kicking myself for not realizing what was going on sooner. How could I have not known this was happening? How could I have been so careless, so unthinking? Why hadn’t I extended her the same service of masking that I did around the rest of the family? While it seems unlikely that every single comment I made to her came off as rude, even intermittent occurrences, built up over years, would be more than enough for anyone to reach their breaking point.

And why hadn’t she confronted me sooner? Now I wonder if she had tried to and I hadn’t understood what she meant. How long had she buried her pain for my sake, for our family’s sake, only to have finally had enough and start pushing back?

All this time I had been hurting her? Making her feel less than? Oh no. No no no. I went back and interrogated every interaction with her I could think of since I was diagnosed and many of them included offhand remarks by me that I had given little weight to. I suddenly realized they had accumulated a ton of it after leaving my mouth and entering my cousin’s ears.

Now that I understand what’s been happening, the enormity of what’s already been done is paralyzing. How I could even begin to make up for it all? One or two inappropriate comments I could apologize for and smooth over, but this? My explanation, that I didn’t know, hadn’t meant to be mean, hadn’t realized I was coming off that way, seemed impossibly thin in the face of what must have been years of harsh treatment.

Telling her I’m sorry now—and I am, more than I can express—is almost certainly too little, too late. Even if I carefully govern my tone from this moment forward, I can’t imagine it will be enough to allay the pain I’ve already inflicted. I can only pray that maybe, some time in the future, she might get to a place where she can forgive me.

And forgiving myself? That’s even farther away.

Posted in Book Two - Mind, Setting 4 | Tagged , , , , , , | 1 Comment

Is it autism fatigue… or something else?

Posted on June 14, 2025 by C. M. Condo

I’ve been making space for my fatigue for over a decade–only to discover it’s a disease with a medical solution.

For the last several years, there’s always been a convenient excuse for my omnipresent fatigue. An illness. An injury. Autistic burnout. Age-related attrition, perimenopause, vitamin deficiency, the list goes on. But last year I finally realized that I had run out of things to pin it on. My fatigue was persistent, unimproved by sleep and made drastically worse by the lack of it. I had tried every possible solution and nothing had moved the needle. I finally realized it could be–had to be–something medical.

Fatigue affects autistics differently. Autism is both a source and an exacerbater. Dealing with the neurotypical environment outside our front doors requires a considerable energy investment that non-autistics don’t have to make and rarely understand. Not having that extra energy makes everything worse: sounds, smells, colors, lights, feelings, every environment is louder and more intrusive, demanding energy to block it out. A trip to the grocery store, or the doctor’s office, or even getting out of the car to pump gas is a cacaphonous and exhausting ordeal.

I would get home from any one of these and literally be too tired to talk. I’d go through periods where I was so blasted I could barely stand to be touched. And though I would try to recharge by taking days, or sometimes weeks off, with minimal sensory input, I never improved above barely functional.

Precious few believed me when I said my body wasn’t right, that I wasn’t supposed to be like this. Doctors blamed it on my medications (largely unchanged over the last decade), my hormones or lack thereof (can it really be both?), vitamins, diet, my pillow, exercising, not exercising, all couched with the suspicion that I was exaggerating or making it up entirely, that it wasn’t real, or wasn’t as bad as I was making it sound.

What’s worse is on some level, I believed them. It wasn’t until it was so bad that I was exhausted all the time beyond all reason, that I began to suspect a medical cause. Helpfully, other symptoms also showed up: the hair on my legs stopped growing, my toes turned white when my feet were cold, my mouth and eyes were dry and sticky, I was thirsty all the time no matter how much a drank, and I had to urinate something like ten times a day. This was lucky, because I’ve learned that physical symptoms are the only thing doctors believe when it comes to women’s health (and sometimes not even then).

The doctor that finally discovered I had low thyroid had also not believed my tiredness wasn’t associated with my anti-anxiety meds. Luckily, my history of severe chronic pain meant I was past over being treated differently because I’m a woman. I refused to give ground and pushed hard for the blood tests “anyway.” When they [barely] showed low thyroid function, I had to push again, because the basically non-existent dose the doctor started me on only moved the needle enough to tip me into the lowest you can possibly be while still being in the normal range.

“That’s not good enough,” I remember telling him. “I don’t feel any different.” I insisted on a higher dose, which he reluctantly granted, and here I am, feeling better than I have in over a decade. (Not in less pain though–thyroid treatment doesn’t fix everything.) It felt like it happened overnight. One day, I was the same as I’d been. The next day, it was like a second engine kicked in. Suddenly I had energy. Compared to what I’d had before, it felt like lots and lots and lots of energy.

I didn’t realize the sheer volume of consequences that crippling fatigue creates until they went away. The most noticeable improvement, oddly enough, is that I can sit in a waiting room with other people. Before, even sitting next to the quietest stranger felt like my skin was peeling off. It was worse if the room was crowded, and impossible there was other noise, too, like TV, phones on speaker, talking, laughing, coughing. Breathing.

And while I’m well within my rights to be angry about all this, I’m mostly sad. And demoralized. Here I thought I would benefit from recent cultural breakthroughs on women’s health, on disabilities like autism, on chronic pain, even perimenopause, only to discover everything is still the same as it’s always been.

Nothing has changed. The ignorance about autism, the still-very-real sexism of doctors (yes, even the nice ones), the amount of settling for less and less I’d reluctantly adjusted to because I thought it was just part of who I am… nothing. I am not the weak, nonresilient person I thought I was. I just have a thyroid disorder, rare but not that rare. But if not for my decade-plus experience with the train wreck that is our health care system, I might never have found out.

A thyroid disorder, an autoimmune and very real syndrome had probably had been going on for some time, buried amidst the myriad of other health issues that cascaded from my acute onset nerve entrapment back in 2013. For 12 goddamn years, the gaping abyss between how I felt before 2013 and how I felt after had barely narrowed. And then one and a half of these itty-bitty tablets per day came along and literally changed my life.

I’ve learned one thing, though. Trust your gut. If something in your body feels wrong, push hard until you get an answer. Screw the people telling you it’s all in your head. It isn’t.

Don’t give up.

Posted in Book Two - Mind, Setting 4 | Tagged , , , , , , , , , , | Leave a comment

autism? doesn’t matter. again.

Posted on March 13, 2025 by C. M. Condo

Some people just don’t get it, and autistics are forced to accommodate them–instead of the other way around

I’ve been transferred to a different veterinary facility while waiting for the new doctor’s hiring to be completed at my home clinic. At this different place, the receptionist and the other tech are delightful.

The doctor is not. Although I’ve expressed that I’m autistic, she doesn’t know what that means, and, I suspect, wouldn’t care if she did.

I’m filling in for a tech on maternity leave. I originally felt lucky that they needed me. Otherwise, I wouldn’t be working at all right now. But I’m not feeling lucky anymore. The doctor is dry, emotionless. She asks deadpan rhetorical questions that read as insults. (Even I can read them, which should tell you something right there.) She never seems satisfied with what I’m doing, and it keeps throwing me off. Each of those little remarks cuts into my fragile self-esteem like a surgical blade, leaving me at a loss as to whether or not it was me that said or did the wrong thing.

The first couple of weeks I tried so hard to please her that I grew nervous and flustered and started making mistakes that I never make normally. I knew I wasn’t doing what she wanted, and kept asking and asking for her to tell me what that was, but she wouldn’t give me anything.

Then, after my third week, I received an email from our boss. It listed every single mistake I had made in detail over the last three weeks and threatened that if I didn’t fix them all, I wouldn’t be able to continue work at that facility.

My stomach dropped and my eyes filled with tears. I hadn’t been told. I didn’t know. Again. Again. All the times I asked her to help me help her she never said anything. I had no way of figuring out what was wrong. That is, until she revealed that she had been taking detailed notes in her head this whole time and unloaded them all on our boss, who had no choice but to relay them to me.

I felt defeated. No, more that that. Really, really upset and really, really, really angry. Once again, my autism had placed my employment in doubt. Once again, all the work I was doing to hide said autism and figure out what someone needed was unnoticed or ignored.

I am extremely good at being a vet tech, but performance anxiety shreds my concentration. None of these mistakes would have happened if she had just told me what was wrong and how to fix it. But she kept me in the dark while I fell apart, committing more and more mistakes as I tried in vain to please her. Then she laid them out at my boss’s feet as though I was the problem and it had nothing to do with her.

I, on the other hand, had been running myself ragged trying to figure out what was going on. Then this email dropped and in one swipe, all of my feelings of insecurity and self-doubt flooded to the surface, eventually leading to a full-blown meltdown, my first in months. I screamed and sobbed and despite my husband’s herculean efforts, I remain upset even now, a full night’s sleep later.

Even though I’m the one with disability, once again I’m the one who has to make special accommodations, not the other way around.

I appreciated the feedback and said so, and thanked my boss and the doctor with a smile on my face, all while struggling with a heavy resentment for them perceiving me as sloppy even though I am the opposite of sloppy; I’m a perfectionist. I just happen to be an easily-flustered autistic one. Clearly, the doctor has some lurking emotional and self-esteem issues of her own. But, as always, I have to be the smiling receptacle thereof just to keep from getting fired.

I can count the number of jobs where this wasn’t the case on one hand. One of them was my home facility, where I never had any of these problems. I would ask what I was doing wrong and they would tell me and tell me how to fix it. No accusations. No threats about being fired. In fact, my receptiveness to feedback was appreciated and we got along wonderfully. I was lulled into the idea that I could be open about my autism anywhere and still be considered a valued employee.

But, no, I guess not. And I’m furious that this is all happening over email, because I wish I could convey how hard I’ve been working and how difficult this has been for me without seeming petty and oversensitive. But because the doctor struck first, I know anything other than total acquiescence would come across as defensive.

Ironically, I’m really good with people. I’ve talked countless clients out of their displeasure by using techniques I’ve perfected over years of careful observance and memorization. I’ve carefully watched how people defuse challenging situations and absorbed their methods. But I can only do this if I know why someone is upset and what they need. If they won’t tell me and I can’t figure it out, I’m useless.

So it really pisses me off when someone who is bad with people but not autistic is allowed to keep being a passive aggressive jerk while I have to just accept it. Even though I’m the one with disability, once again, I’m the one who has to make special accommodations, not the other way around. I wish I was the kind of person who could tell her off, explain that I had been doing this since she was in high school and that my talent and experience should be respected, not picked apart by someone behind my back when they never gave me a chance to do what they wanted in the first place.

But that’s not me. I never do that. I can never be sure if it’s the right time or place, so I err on the side of not at all. But it still stings. And I’m still angry. And while I love everything else about this clinic, it will be a relief when I get to go back to my original quirky workplace and leave this horrible person and all her crap behind me.

Because I do deserve better, even though she doesn’t acknowledge it. I could make her job easier, but she prefers to think of me as the problem and not the solution. And nothing I do or say will change it, and she will get to keep acting like offended party for as long as she likes.

Again.

Posted in Aspect IV | Tagged , , , , , , , , | 2 Comments

My new book is now available on Amazon!

Posted on March 2, 2025 by C. M. Condo

this great ape – essays on autism by a late-diagnosed autistic woman

Click here to see on Amazon.com (USA)

Posted in Aspect IV | Tagged , , , , , , | Leave a comment

laziness, autism version

Posted on February 12, 2025 by C. M. Condo
Photo by Austin Lowman on Unsplash

A popular news magazine just published an article on child psychopathy and what is being done to treat it. Studies had revealed differences in these children’s brain development as young as three or four years old. As I was a child with autism, a similar brain-related disability with similar societal consequences for atypical behavior, I was curious to see how their therapy worked.

While my behavior was not violent, I faced the same difficulties as children with callousness and lack of empathy. I couldn’t keep friends. I didn’t know how not to say upsetting things. Most important, I just didn’t understand how a cooperative society worked. Antisocial children struggle with these things, as well.

Although, perhaps struggle isn’t the right word. It isn’t a struggle for them. They don’t feel pressured to change. By the time they hit puberty, they know what they should do; they just don’t see any reason for doing it. People who follow the rules are beneath them. They like nothing better than to insult and assault others. It gives them a perverse satisfaction. They are taught to mimic and perform empathy through a reward system that involves games, candy, outings, and time with family.

The motivations of autistic and psychopathic behavior may be different, but the solution is the same. Autistic children must also learn how to exhibit empathy for those around them. Not because they don’t want to, but because they don’t know how to. In autistic children, rewards for performing this behavior correctly are as much external as they are internal. Furthermore, autistic behavioral conditioning is fraught with issues as to how much is compensation strategy and how much is conversion therapy, and consensus among experts and autistics alike has been elusive.

Regardless, using a reward system was how I trained myself to act non-autistically. I had to develop the same library of appropriate thoughts, phrases and reactions. I had to, and still have to, suppress my natural instincts. It takes constant work, even if that work is well-practiced and occurs almost automatically when a given situation emerges. My reaction times are quick, so quick that the uninformed wouldn’t notice the minuscule delay.

But I still have to force myself. I had a stressful day at work yesterday, and it was all over my face. My coworkers could tell and took turns trying to reassure me. I had to paste a “real” smile on my face to express my gratitude, as words with my usual expression would have seemed insincere. It was a costly additional exertion on a day that was already too energetically expensive. (To give you an idea, I have to work so hard to not be myself that I can only work around 20 hours a week.)

One person who had “graduated” from a retraining program for psychopathic children classified the work he had to do to suppress his natural instincts as an “8” on a scale of 1 to 10. And I thought, that’s me! That’s how hard I have to work.

The realization cut deep. Before I knew I was autistic, I had latched on to the idea that I might be one of those antisocial individuals. I had so much difficulty understanding why people got upset with me and didn’t want to be around me that it seemed the only logical explanation. It was hard to acknowledge that the solution I’d come up with, learning behavior instead of knowing it, was pretty much the same as it would have been either way.

There is but one difference between the two. Empathy.

I was distraught when I found out I’d insulted someone. It hurt when people pulled away from me, when no one wanted to be my friend and no social group could stand me. Because unlike the kids in the article, I wanted those things desperately; I just didn’t know how to get them. When I was teaching myself, each mistake was all the more painful because it was the exact opposite of what I wanted—and not for lack of trying.

Rather than being happy when I hurt someone, as those kids were, I was traumatized. Slip-ups were inspected and revisited often, as I sifted through each detail trying to figure out where I went wrong. If I let something slip, or, more likely, allowed my frustration and anger to seep out and affect those around me, I would berate myself at length for having been so sloppy, so lazy, so uncaring.

Lazy was a frequent accusation in my inner monologue. I imagined everyone else was working, too, but with much better execution and results. I felt like was forcing myself to excel at a sport for which I had zero aptitude. But since that was the price for relationships and a social life, I paid it every day without complaint. (Well, minimal complaint).

My rewards were intangible, but invaluable nonetheless. Instead of the prizes they use on low empathy children, I received respect and friendship from those around me and as full a social life as I wanted. But even with half a lifetime of experience it’s still hard. I can’t imagine how much harder it would be if I didn’t care about those things.

A cohort of autistics don’t care about those things. Do they have antisocial traits? Atypical development in the same areas of the brain? I hadn’t thought so, but now I’m wondering if psychopathy is an extreme end of “high”-functioning autistic behavior. They’re both neurological entities, and both as much nature as nurture.

The only difference is whether the difference bothers you or not. Which seems an all too thin and frangible line of distinction.

Posted in Aspect IV | Tagged , , , , , , , , , | 1 Comment

Aspergers-like

Posted on January 4, 2025 by C. M. Condo

Photo by Julian Gentile on Unsplash

I found a new word today! It’s “Aspergers-like.” What does “Aspergers-like” mean? As someone with Asperger’s, I feel like I should know. It was used in an article about programmers preferring to code in dark rooms on black screens. The writer explains the use of this made-up word by asserting that people with Asperger’s are light-sensitive and could be suited to coding work.

I can’t choose among the many sarcastic repartees that came to mind, so feel free to insert your own.

While it is true that all of my senses are more likely to distract me than non-autistic people’s, some more likely to do so than others, namely hearing, smell, and taste. Light isn’t usually an issue for me unless I’m truly and well depleted, by which point everything hurts, light, sound, odor, even touch. In short, I don’t need darkness to work.

About ten years ago, back when I thought I might be a scientist, I took a programming course. It was a spectacular failure. Some autistics probably write and edit amazing code. I am not one of them. It took me four days to laboriously work and rework a few lines to spit out a simple graph. Even though I’m Aspergers-actual, not Aspergers-like, I am decidedly not better suited to programming than normal people who enjoy and excel at it.

This is not far off from those ridiculous lists of jobs that people on the spectrum should be good at, based on supposed stereotypical tendencies. Such tendencies are the mere trimmings of our autism and do not give any idea what an autistic’s life is really [sic] like. Inevitably, the people who make these lists are not autistic, don’t have any autistics in their family, don’t know anything about being autistic, and wouldn’t know an autistic if they bumped into me on the street.

Case in point: I do part-time work as a vet tech. I love working with animals. I’ve worked in lots of different clinics and hospitals in lots of different settings and you know what they all have in common? Noise and odor, two of my big three. Dogs barking, cats meowing, goats bleating, pigs squealing, you get the idea. They also smell, and not always pleasantly.

So someone who knows nothing about autism might look at the content of this post so far and think Hmmmm, maybe this is something that someone who was Aspergers-like, with hearing and scent sensitivities, wouldn’t be suited for.

They’d be wrong. For autistics, it’s not just any sound or smell (or light, taste or touch). It depends on the type, level and circumstances. For me, really loud stuff is bad. Really quiet, but still audible, stuff is worse. Dogs and cats barking and wailing? I tune it out. Scent-wise, I have trouble with dirty clothes, or too much perfume, or when a bathroom smells bad, but animals? Meh.

Not only that, but… …not everyone with sensory sensitivities is autistic.

[pause for effect]

I mean… Asperger’s-like? That’s like saying ambidextrous people are lefthanded-like. Pardon me while I puke in my cupholder.

The article itself had nothing–and I mean NOTHING–to do with being neurodivergent. I’m not even sure why this obviously unresearched factoid was even included. People make up terms to suit their purposes (see: factoid), and I get that, but not even the flimisiest of excuses justifies the waste of couple dozen words of copy on something they know little about and have even less business mentioning. Why couldn’t they just say “people with light sensitivities?” It’s more accurate, and requires less explanation.

I’m probably fighting a losing battle. I gave up on the verb form of “impact,” which, not long ago, was a medical condition of the colon that meant you were very, very sick. Despite being resigned that this one isn’t coming back, anytime someone says “impacted,” I still think of poop.

Why did the writer have to include Asperger’s at all? It completely took me out of the story. I can barely remember anything from the rest of the article.

Who knows? Maybe their brain has become impacted-like.

Posted in Book Two - Mind, Setting 4 | Tagged , , , , , , , , , | Leave a comment

doctors, autism, anxiety & assumptions

Posted on December 26, 2024 by C. M. Condo

Photo by J A Uppendahl on Unsplash

I’m sitting in yet another new doctor’s office. This time, it’s because my mental and physical fatigue have taken a sharp turn for the worse in the last few months, and after trying a few different herbal supplements to no avail, I decided to see if there might be a physical cause.

However, after going over my medical history and medications list, which includes a phalanx of anti-anxiety and anti-insomnia medications, this new doctor claimed that one is only supposed to take psychoactive drugs temporarily and is “expected” to eventually wean off of them completely. (This is not actually true, by the way.) He went on to assert that my medications were at the root of my fatigue problems.

I’ve never had a poker face, so I’m sure that the incredulity I felt at this audacity was obvious. Using my words, I responded that because I was autistic, I had had intractable anxiety and insomnia for over half of my life, and that medication was the only way to manage these issues. I was careful to point out that I’d been taking these meds for years while my fatigue was recent. I allowed that I was on a lot of [what should be] sedative medication, with the caveat that even so, my autism-associated anxiety and insomnia sometimes broke through anyway.

I knew he would suspect the meds, so I was prepared with this rebuttal. We went back and forth, while I tried to maintain my gentle but firm insistence that my meds could only be reduced to a point, a point at which I was very close to already. Ultimately, the doctor agreed to do lab tests for all fatigue markers, so I suppose we reached a sort of detante. Or at the least, he agreed to kick the can of that argument down the road.

But something was niggling at me for the rest of the day, and it wasn’t just his assumption about my medications. What was it about the interaction that was digging into my psyche like a splinter under a fingernail? It wasn’t until after dinner that I got it, and then I got angry, and not just about the medication impasse.

He never, not once, asked about my autism.

He didn’t ask when I was diagnosed, how my medications affected it, or even why I was non-functional, as I assured him I was unless medicated for the issues that stemmed from it. In fact, the word “autism” never crossed his lips. He didn’t even argue about it; he just acted as if it didn’t exist, or if it did, it was too minor to make an issue of.

Yes, I know, not everything is about my autism. Except that everything is about my autism. It affects every single thing in my life. Medicines affect me differently. Food tastes and feels different. My senses of hearing, seeing, smelling, and tasting are hyper-sensitive. My visual processing is abominable, to the point that I am face-blind, which on top of frustrating is also embarrassing.

These are things that no medication will fix. Only the symptoms of them can be dealt with, with therapy and medication, and I’ve had plenty of both, to the point where I need quite a bit less of them. But less is not none, because medication can’t make me not autistic.

The word “autism” never crossed his lips. He didn’t even argue about it; he just acted as if it didn’t exist.

Beyond the reach of medication is how much harder I work to sound, think, feel and act normal around other people. I’ve heard “you don’t look autistic” enough to know I’ve gotten good at hiding my autism. The problem is the better you get at it, the less seriously people take you when you tell them about it, and I’m pretty sure that’s what happened here. The doctor assumed that someone who looks as “normal” as I do couldn’t possibly be as affected by their autism as I claimed to be.

I thought I was past the point of doctors implying that my issues were all in my head, but I have a sneaking suspicion that this is exactly what the new doctor thought. He likely assumed that I had diagnosed myself with all sorts of trendy internet things, of which autism was but one. That is definitely not me, but I was already on thin ice with the meds thing and I decided not to bring it up.

Trendy or no, though, my autism isn’t going away, which means my anxiety isn’t going away, which means I can’t stop taking my medications. But in order to believe that, you have to believe that my autism affects me enough to cause this much anxiety. Expecting doubt from the anxiety side, I was unprepared to be disbelieved about my autism, and didn’t realize it had happened until much later.

Much handwringing has been done in the media about how we are all less resilient than we used to be and are all over-therapeutized and over-medicated. Whether or not that’s the case has nothing to do with me. I am autistic, I am less resilient because of it, and my medicine is not just a salve for the dispirit of modern existence, but an absolute necessity.

I don’t know if I’ll be able to convince this doctor of that. I’m hoping something will show up on the blood tests and render arguments about medications moot. But if it doesn’t, me and this smug, self-satisfied jerk doctor are not going to work out.

Am I prepared for another trip through the find-a-new-doctor-who-takes-seriously gauntlet? It seems like it never ends. First my pain, then my anxiety, and now this. What does a person have to do to find a doctor who just listens?

Posted in Book Two - Mind, Setting 4 | Tagged , , , , , , , , , , | 3 Comments

restraint

Posted on May 23, 2024 by C. M. Condo
Photo by Jovica Smileski on Unsplash

Autistic people are experts on what is good for them personally. What’s needed, however, isn’t necessarily what non-autistics would expect. Often, neurotypical people think they’re being kind and solicitous, but they’re actually making things worse. And trying to explain it to them is nearly impossible–especially when you’re already in distress.

Case in point (with certain details changed): I [used to] do a weekly luncheon with what had grown into a large and noisy group of women. A few of us take on certain responsibilities for a few months at a time, like getting a rough count that morning and calling ahead to the restaurant, or maintaining a phone list, or what had been my task, collecting the money from everyone (usually via app) and paying the bill.

You probably know where this is going. You may be thinking, an autistic woman has no business getting involved in something like this. Well, you’d be right. In my defense, when I first started going to this luncheon, it was a pretty small and cozy–and quiet–group. It has since grown into a monolith that includes 20 people or more. As such, I have been going less and less often, because in my lately spoon-deprived state, I don’t have anywhere near enough juice to shield myself from the cacophony, the requisite hugs, the smells of the women and the food, and the difficulty in properly directing my focus among a group of a couple dozen chatty women.

I let everyone know last month that I needed to turn over the check duties because of my autistic challenges, giving the group time to find a volunteer to take over for me. There were a few logistical details I needed to pass on, so after a four-week hiatus, I went back to do the handoff to the new volunteer.

As soon as I walked into the restaurant, I knew it was a huge mistake. I knew it was going to be very, very, very bad. And it was.

The women descended upon me like the butterfly gauntlet of yore, and each one wanted a long hug and a conversation about how I was “really” doing. I lost count after being subject to this by 7 or 8 women. It was all I could do not to run out of there screaming.

Worse, the woman who was taking over check duties for me couldn’t make it and I had to stay to pay the check one last time, so I was forced to sit there picking at a pastry I didn’t want and sipping coffee I didn’t need until everyone was done eating and talking. I sat at the very end of the table, put ear plugs in, and pretended to be watching videos on my phone until it was finally time to pay the check. Then I had to go around and make sure of the totals and tip and such. Once I paid the bill, I bolted before anyone could say good-bye.

The pain and anguish I suffered during this experience exceeds description. It was like having thousands of tiny shards of glass bouncing around inside my body. I felt like a too tightly coiled spring in a too small box, pressing painfully against the inside walls. I couldn’t talk. I could barely even look at anyone. I found myself counting minutes and even seconds through this torture until I was finally released.

But how do you tell someone who genuinely likes you and is worried about you and wants to comfort you that the best thing they can do is not touch you, speak to you, or even look at you? I can’t imagine having that conversation with most of these women. (Thankfully, there were two women that know better, recognized my distress, and just leaned in for a whisper of encouragement before withdrawing.) Even an entry point to a conversation like that completely eludes me.

Yes, yes, I should just approach each one and explain that as a depleted autistic woman, I am too easily overwhelmed by touch and conversation, even hugs and expressions of concern, and that I need to be left to my own devices in this situation. And I would have to say it as kindly and sincerely as possible, so I would have to mask the whole time I was doing it, performing my elaborate performance of posture, facial expression, gestures, tone of voice, and ambiguous words that neurotypicals need to not get their feelings hurt. All of which would be so taxing as to completely negate the point of the exercise.

In short, when I do not have enough spoons to deal with another human, I am far past the point of having enough to explain why.

At the luncheon, it was all I could do not to cringe when the women hugged me, to whisper “okay” when they asked how I was doing, not to push away their scrutinizing faces as they scanned mine for how I was actually feeling. I wanted to collapse into myself like a black hole and vanish.

I shouldn’t have gone; I knew I was in a bad space before I went, but I just wanted my commitment to be over and done with so I could stop going and quite possibly never return. And now that it’s over I’m so relieved I could cry, and did, in fact, cry in my car after I left. I didn’t realize how hard it had been on me until I was free of it.

All the things that people say you should do to improve your quality of life, spending time with friends, exercising, even meditating, they all involve spoons. Spoons that an autistic in burnout simply doesn’t have. It’s only recently that I’ve been able to accept that, for me, self-care is total solitude and sensory deprivation. Some days, even texting is more than I can manage.

It’s hard to allow myself these things. And I want to extend to every other autistic experiencing burnout that being alone doing nothing isn’t laziness. It’s medicine. It’s life-changing, necessary medicine.

If only I could explain it to the butterflies.

Posted in Book Two - Mind, Setting 4 | Tagged , , , , , , , , , , , , , | 2 Comments

alternates

Posted on May 1, 2024 by C. M. Condo
Photo by Casey Horner on Unsplash

Physicists traffic in some pretty wild theories about the nature of our existence. I’ve expressed frustration about the idea of multiple universes as an easy out of inconvenient three-dimensional constraints. (After all, other planes of existence can explain away a lot of inconsistencies.) The reason I bring this up, however, is not to uphold or debunk such theories. Full disclosure, I have experienced occasional moments in my life where the way I remembered something was completely different from how someone else remembered it, and I’ve decided that, for lack of a better explanation thereof, I’m comfortable with the possibility of slip-streaming from one version of reality to another.

I bring it up because I was discussing with my therapist how angry I was having to lug around my past of being bullied, ostracized, assaulted, lied to, or taken advantage of, something that happened so often and for so long that my soul feels broken and damaged beyond repair. I live in a barely managed state of despair. I have no idea how to move past something that took up such a significant chunk of and made such a significant mark on my life. I am now middle-aged, and still struggle with loving myself or seeing myself as worthy of being treated with kindness and dignity.

But last night I was thinking that perhaps I needed to expand upon my limited thinking about the situation, my potentially unfounded assumption of a two-dimensional, linear timeline that only moves in one direction. It is at least possible, if not plausible, that there is a plane, or are multiple planes, of existence wherein I never experienced one or more of the handful of traumas that have since defined my reaction to triggers as a reopening of old wounds that bleed afresh as though brand new each time.

There might be a version, or maybe several versions, of me that had different experiences. That would be more mentally and emotionally resilient because she never went through the things that hold me under my pain like cement feet. (I’m not interested in hearing arguments about resilience being measured by the number of awful things that you’ve had to get through–I’m not convinced that’s how it works.) I don’t need to slide over onto (into?) one of those planes to access the possibility that I could be mentally healthier and happier than I am now.

It may be that the scars trauma leaves cannot be escaped by surfing different paths; they may imprint such indelible marks that there is no way to keep from dragging them along whichever turns you take. I may not be able to erase the emotional, if not spiritual wounds I carry by any amount of metaphysical drift. But the fact that it is at least possible (if rather unlikely) offers a new way of thinking about it.

The hardest thing about moving past trauma and, more important, those deeply ingrained trauma responses, is that I don’t know what I would move forward to. I don’t know who I would be without them. It’s so far removed from who I am, from how I feel when I allow myself to access that seemingly bottomless well of darkness, that I don’t even know where to start.

However, the idea that that well-adjusted person already exists somewhere (if where is the appropriate term) presents an opportunity to imagine what she might be like. Of course, I can’t ever completely erase the effects of trauma; the best outcome I can hope for is a disentangling of that trauma from my current way of feeling and thinking so that I can react more like a person who did not experience those events. But even that feels out of reach at the moment. And the idea that there is a version of me that does react that way gives me hope.

If I can envision a non-traumatized (or less traumatized) version of myself, I have a goal I can work toward. I can imagine her responses to different things, and how they are different from mine, especially what might be distorted about mine and how to un-distort them.

In my last job, it took months for me to convert my knowledge about how toxic the workplace was and how awful I was being treated into the action of quitting. But the non-traumatized me might have acted on that knowledge far sooner, under the realization that she did not deserve that sort of treatment, especially considering what she has to offer in terms of experience and knowledge about the work. She might have left after a few weeks in search of a better opportunity, and might have found one more quickly.

I want to be that woman. I want to be the woman who trusts her feelings about how she is being treated and acts upon them. Who trusts that other people should treat her with respect and to not accept those who don’t. Autistic people are discouraged from entrusting their instincts by a lifetime of negative feedback. Negative feedback is one thing, but I went through some truly horrible shit, so horrible that to this day I have never told anyone the whole story, although a couple of people know one thing or another. (And by a couple I mean literally two, and one is my therapist.)

But if I can act as if I were just a person that got that negative feedback, minus the horrible shit, and that now recognizes, as I do, that nearly all of it was due to misunderstanding my intentions, maybe I can get there after all.

No alternate existences required.

Posted in Setting 4 | Tagged , , , | Leave a comment