Part One: An Eating Disorder?
When I was seventeen, I stopped eating.
It had been a long time coming. I wasn’t picky, exactly — I prided myself on my willingness to try spicy or pickled foods. But I was particular about what I ate (and about a lot of things) and sometime in high school it came together in a dangerous way.
Because I was a teenage girl in America, everyone reacted as if it was an eating disorder. And, strictly speaking, it was: my eating was definitely disordered. But no one could convince me that I didn’t need to starve myself to look better because I didn’t think I needed to starve myself to look better because it wasn’t at all about how I looked.
The thing with anorexia is that it’s defined by behaviors, not motivations, and the clinical definition is triggered by a low body weight. The initial weight loss happened when I was fourteen and was due to a physical problem with my digestion. It took me years to escape it, complete with feeding tubes and massively high-calorie diets that made me think about food all the time and focus purely on what it could do for me calorically. I felt too full all the time, and I hated it.
So, when I was old enough, I just stopped.
People often don’t know what I mean when I say that I can feel my body digesting. People tell me that everyone feels that way, that you just have to ignore it, that it’s normal. But while I cannot speak to any else’s interiority, I highly doubt most people feel the way I do about food, because if they did, they would not eat the way they do.
I cried to a nutritionist and psychologist for months trying to get them to understand.
The only thing that helped was walking. I had always been a pacer, but at this time in my life it became routinized, excessive. It was the only way that I didn’t feel awful. My family, afraid I was trying to burn off calories that I couldn’t afford, desperately tried to get me to stop, and that only made me feel worse.
After I tried an elimination diet, it turned out there were about a half-dozen things that I couldn’t digest properly. I finally convinced my parents to let me completely eliminate meat from my diet as well, which they had resisted because they feared I wouldn’t get enough protein without it.
And suddenly, eating wasn’t a problem anymore.
People with anorexia nervosa often develop safe foods the same way I did, but they panic about weight gain in a way I did not. I was not troubled by the thirty pounds I gained to get back to a healthy weight, because they were never the problem.
I went away to college. I’ve never struggled with eating again.
Part Two: OCD?
The psychologist I saw when I was underweight agreed that I didn’t match a classic eating disorder presentation. I was diagnosed with OCD, and it kind of explained things. The pacing was a compulsion. The fact that I needed to know every ingredient in the food I was eating was an obsession.
But it didn’t quite fit. The therapies they suggested felt somehow both foreign and obvious. The psychologist didn’t hear me when I explained what was happening in my mind and instead told me what they knew to be going on, even though I knew they were wrong.
I told myself they had to be right: OCD fit better than anything else did.
I need to tap on things. I choose to complete my rituals over normal social engagements.
But it didn’t explain everything.
Was I also the most intense introvert anyone had ever seen? Did I have social anxiety?
It became a joke: “We were having such a good time, and then you just disappeared!”
College was freeing and fun, because for the first time I was surrounded by kids who hadn’t seen me for years as the girl with the feeding tube in her nose. I threw myself into socializing and academics in equal measure, and succeeded in one of them (I’ll let you guess which one it was).
I enjoyed getting ready for frat parties, but had to flee by the time they started getting crowded. It was just too hot, too loud, too much. Instead, I’d go outside into the chill night air and call my best friend back home, walking in slow circles around campus in my ridiculous frat party outfits, talking about everything and nothing.
It became a joke with my new college friends: “Kelsey, we were having such a good time, and then you just disappeared!”
It was a little cruel of me, honestly. I was determined to seem interested in the hookup scene everyone else enjoyed – every teenage girl knows the only thing worse than being judged a slut is being judged a prude – so multiple times I brought a boy back to my dorm. Each time, I literally fled. I’d leave him standing in the hallway confused as I made an excuse and locked myself in the bathroom or dashed out into the night to breathe.
It wasn’t that I was afraid of sex. It was everything else I feared.
How do you explain to some guy you just met that before you sleep you have to eat a specific snack while listening to a specific playlist? That you cannot get into bed without performing certain stretches? That if it’s between midnight and 2am — which, of course, it was — you must either be asleep or walking, and anything else is simply Not Allowed?
You don’t, that’s the answer. You don’t. Instead, you run away.
Part Three: Anxiety
My dorm friends all got into “top tier” sororities, and I couldn’t figure out why none of the sororities that wanted them wanted me. Looking back at the way I dressed, the horrendously dyed hair I had and my amateurish makeup, it’s no mystery to me now. The only way I knew to style myself was to match my clothes way too much, because I knew clashing was bad. I internalized rules about how to perform femininity, but it took me so long to figure each one out that they’d changed by the time I caught up. As a consequence, I aimed for timeless. I ended up with ugly.
At this time, I was also starting to take engineering classes, realizing that I wanted to be what we at my university called a techie in the School of Engineering rather than a fuzzy in the School of Arts and Sciences. Technical coursework was novel to me, exciting. I had no idea how to succeed in these math-heavy classes, but I wanted to.
I dropped out of the sorority that did accept me because I couldn’t stand the fakeness. I already was faking my emotions every single day, but the levels of artistry those girls exhibited was just too much for me. I didn’t know how they became best friends — no, sisters — the moment they met. If I tried, I would crash.
Instead, I leaned into academics and did fine, but I’d never had to work at learning before. Sophomore year hit me like a runaway train, bowling me over and destroying my coping mechanisms.
Periodically, I had what I termed “panic attacks”, because I had no other word for them. I melted down, crying over nothing, sure I was about to fail, sure that I had already failed and just hadn’t found out yet. There was no AC in my dorm that year, and the oppressive warmth of my third-floor room pushed me over the edge more than once. I couldn’t escape or explain why I felt so terrible. I looked at my life and was sure I was supposed to be handling it better than I was, but I had no idea how. I sat beneath my raised bed with my head on my knees and my hands clenched, sobbing over nothing at all.
But by this time, I had met my now-partner. He was the first person — and to this day, the only person — who has never made me feel judged.
I want to be clear about something here.
I don’t mean that everyone I thought was judging me actually was. Many people were not, either because they’re my friends and family and love me or they’re strangers and don’t care. But nevertheless, I felt it constantly.
People stared when I walked around while reading a book. People were bothered when I tapped my fingers incessantly on the pages of an exam. My freshman year roommate hated me, I later learned, because of my weird habits with pacing and the rigidity with which I approached bedtime routines. I never once noticed that she was bothered, because she never said anything directly. Somehow, I was just supposed to have known.
But my partner shrugged when I told him at midnight while studying that I needed to walk in circles if I was going to keep working. When I tapped on the pages of a practice exam, he didn’t blink.
For some reason, he never assumed I knew what I was supposed to be doing, and didn’t make me feel shame when I did something wrong.
We started going everywhere together. For some reason, he never assumed I knew what I was supposed to be doing in a given situation, and didn’t make me feel shame when I did something wrong. When he told me that I was standing in the wrong place or being too intense or talking too loudly or not enough, he said it in a way that made it seem like an understandable mistake that anyone could have made.
It was no wonder I fell in love with him.
But the “panic attacks” and the stress got to me. I couldn’t sleep, couldn’t function, felt so far behind. My social life suffered, because there was no way I would let my academics falter.
More times than I can count, my partner had to patiently wait for me to work out whatever stress I was feeling. He joined me in leaving a party early, helping me hide that I just couldn’t be there anymore. He gave up some of his own social life because I couldn’t handle so much time with people.
Unlike the psychologists who didn’t help, he gave me coping mechanisms that actually worked. He reminded me that my panic was irrational, that I wasn’t a failure now and wouldn’t be in the future, that the overwhelm I felt was going to end, that the people looking at me askance didn’t matter, that we could go somewhere cooler or quieter and it would all feel better. He let me tap on things and walk in circles as much as I wanted. He saw that these were signs I was stressed in that I did them more when I was stressed, but they lessened it, rather than making it worse. Stopping only made me want to explode.
Basically, he is a genius and has patience I’ve never seen anywhere else.
I sobbed the day I got into grad school because I had no idea how I could do it. I cried even more when I got funding and knew I could actually go. Two years later, when I received my first job offer, I broke down because I would have to explain to someone in an office all about my pacing and tapping. Though I’d had internships, I hadn’t cared much about them — I stepped away to soothe myself with weird behaviors whenever I had to. At one such internship, I was yelled at by a coworker for walking because “some of us are trying to work here!”. I spent the rest of that summer working in the big loading bay down in shipping and receiving, hiding where I couldn’t bother anyone.
Part Four: The Truth
My entry into the corporate world was much less bad than I had thought it would be. By some miracle, I found a company that was willing to work with my quirks. When we rearranged the office a few months into my time there, I had a special pacing area near my desk. I felt frenetic and exhausted, but I was happy: I liked my coworkers, I liked my job, I felt like such an adult going into the office every day.
Meanwhile, my partner was struggling. He’d managed to coast through high school and made it through college, but finally in grad school his difficulties focusing and staying on task caught up with him. Grad school is hard for anyone, but it’s especially hard for people who need artificial urgency and lots of structure in order to succeed, because most of the difference between undergrad and master’s level classes is how much guidance you get.
It came as a surprise to no one when he found out he has ADHD.
Getting that diagnosis didn’t fix the depression that had been building, though. He felt aimless and didn’t know if his degree was the right one, but he was in too deep to change it now. He cycled through medications that didn’t help, and struggled toward graduation.
I tried to be there for him like he had always been there for me. Together, we dove into researching the ways brains work and vary, trying to understand not just the clinical presentation of ADHD but the actual processes and experiences that underlie it.
For my part, I was happy but also exhausted. I joked that my immune system sucked, because I got sick all the time, and the cure was always to take a day or two off work to just sleep. It was funny, though — no one else was ever sick when this happened. And as time went on, these crashes came more and more frequently, predicated by intense work projects or busy weekends with equal frequency.
Later, I’d find a word for what was happening: autistic burnout.
Because there you have it, that’s the big reveal — it’s not anorexia. It’s not OCD. It’s not generalized anxiety disorder. It’s autism!
It needs sparkle emojis: ✨ autism ✨
It took the pandemic for me to figure this out. As everyone else descended into fear and despondency, I came alive. I hadn’t even noticed how much energy I spent during conversations trying to track eye contact until I didn’t have to do it anymore when everything switched to Zoom. I didn’t realize how exhausting it was to restrain how I sat or wonder what I should say next or decide whether to smile or all of the other things I did for ten hours a day in an office when suddenly I didn’t have to do them anymore. The only other person I saw was my partner, and I could be as awkward and twitchy as I wanted around him.
And, actually, I wasn’t nearly as awkward or twitchy. Tapping felt more rote and comfortable when there wasn’t so much added stress. I didn’t have too-hot reactions that sent me into a spiral if I was safe in my apartment. I didn’t get overwhelmed by music if I was the only one playing it.
I completely stopped having “panic attacks” and realized they were never panic attacks at all. I slept just as much as before without crashing from exhaustion. I worked shorter hours and got way more done.
I finished writing the novels I’d been playing with for years and got two of them published. I finally stuck to a workout routine for the first time in my life.
On one level, the world was falling apart. I was terrified, just like everyone else.
But on another level, I’d never been so happy.
I joked that I was a misanthrope, but that’s not true. I don’t hate people. I just don’t understand them. They exhaust me. I want them to like me and I have no idea how to make that happen. I feel like I’m performing all the time, miming for a role that has no script, no matter how much I try to write one.
And so when I read a novel with an autistic protagonist, it became very obvious very quickly what the truth was.
Part Five: Autism
Social struggles. Exhaustion with people. Repetitive actions that you just have to do. Getting overwhelmed by sounds or other sensations. Trouble with eye contact. Gullibility. Intense interests. Rigid schedules and routines. Meltdowns and burnouts.
It took me a week to work up the will to tell my partner what I suspected. He hadn’t considered it, but once he looked into it he agreed that it fit. When I told my childhood best friend, she said, “I assumed you knew.”
And then came all of the research.
I took every online quiz about autism that exists. I read dozens of scholarly and popular press articles. I spent hours on forums, reading and contributing. By the time I managed to get an appointment to look into diagnosis, I was absolutely sure.
It explained so much about me. It became a running joke in our apartment that anything I did was actually an autism trait. Rather than bothering me, this delighted me. Preferring twinkle lights over lightbulbs? Disliking the color yellow? You can find a study that says these are autism things (whether they actually are or not is another story, of course).
Some studies suggest that most girls with anorexia nervosa have autistic traits. I was born early, and the earlier you’re born the greater the chances of an autism diagnosis (particularly the kind of autism that used to be called Asperger’s Syndrome). Eczema, which I have, is far more common in autistic people than the general population. Autistic people are more likely to be face blind and synesthetic, both of which I am.
The list goes on and on.
The night before the appointment, I cried. Confirming this aspect of myself would be so freeing, and I was so excited to know for sure why I was so different from everyone I knew. I had found an explanation for why so many things that came so easily to other people felt so hard, and why I struggled with such basic things as knowing whether a conversation was an argument.
But I was also terrified. Did this mean I was doomed to never be more successful than I was now? My pacing bothers other people, but it bothers me way more, I assure you. I need it, I crave it, but it cuts into my day, restricts me from doing things I would love to do. No one is as frustrated as I am when I need to follow a schedule or freak out about an upcoming vacation because I won’t have a routine. I have heard “This is supposed to be fun!” more times than I can count, and it breaks my heart to have people who love me do nice things for me that I can’t enjoy.
I have spent my entire adult life trying to overcome this, trying to have fun when and how everyone else does. Getting an autism diagnosis seemed like giving up.
And it also felt fake. Surely if I’d made it this far without one, I didn’t really need it? It felt like a vanity diagnosis, and in some ways, it is — I have already massaged my life into giving me all of the accommodations I need. I work at home, listening to exactly what I want, with earplugs handy and the lights dim. I eat exactly what I want when I want, in the cold and dark, with my meals planned days in advance. If I were still in an office maybe I would have had requests to make my work situation feel better, but I don’t need them now.
Maybe I was making it all up, maybe this was just the latest explanation… Maybe I was just bad at being normal, and wanted an excuse!
My partner looked at me, smiled, and said, “You’ve never been normal.”
And so I got the diagnosis. I have a piece of paper attesting to what I already knew. The psychologist thought it was a little funny, I think, how worried I was that she wouldn’t confirm my self-diagnosis, and then offered to suggest any accommodations I might need. But I can’t think of any.
If I were still in college, I could’ve requested accommodations to make things less awful, to make me less of a bother to other people.
Because that’s still how autism is discussed. Our behaviors are addressed only in terms of how they make the people around us feel, and I think that’s why my partner’s reaction to me, both before and after we knew why I behave the way I do, is so empowering. He doesn’t think about how what I am doing impacts him. He thinks about how what I am doing impacts me.
This externalization, behavior-first approach to autism is a massive problem. It’s why little white boys are diagnosed with autism, and little white girls are diagnosed with anorexia, and little black kids are arrested for the same behavior.
Autism means you don’t understand social cues. You know the rules, sometimes, but you don’t know how to follow them, and you don’t know what you’re doing wrong when you inevitably fail. You get overwhelmed by things that other people find stimulating or only mildly annoying. You need to know how things are going to go and why, and you have rules that you must follow to feel okay. Sometimes these align with the rest of the world’s ideas of typical behavior, but sometimes they don’t. Autism means being unable to dress according to the latest fashions — not unwilling. Unable. It means needing to be given time to warm up to an idea that other people find fun and spontaneous. It means a lot of social activities — like bars and clubs and sports games — are the opposite of a good time.
This is why little white boys are diagnosed with autism and little white girls are diagnosed with anorexia and little black kids are arrested for the same behavior.
Part 6: Onward
I would love to be able to introduce myself with this detail. It would help so much to have people immediately understand what it means. But I’ve been afraid to share the truth because there are a lot of harmful stereotypes about autism.
People think it implies mental retardation, when that’s not true — there are many people with both autism and mental retardation or learning disorders, but studies vary on the rate with which they co-occur. It’s possible there are no more autistic people with low IQs, as a percentage, than allistic people with low IQs (Allistic means people without autism. Neurotypical means people without any mental differences, including ADHD, learning disabilities, PTSD, and many more).
People think it’s similar to psychopathy, or that autistic people are robots. And while autistic people often do not show emotions the same way allistic people do — in particular, we are often bad at mirroring others’ emotions — we do feel emotions, and we do feel empathy, and we do feel love. Some studies suggest autistic people have more compassionate moral codes, leading us to be more likely to do good even when no one is looking, and have a more robust ability to empathize — perhaps because we have to imagine how it feels to exist in a very different brain, all day long, just to function. All people, autistic or not, vary in their abilities to feel cognitive and emotional empathy (understanding others’ emotions and feeling them, respectively).
People often think it’s a major disability or not a big deal at all. It’s both.
How disabled you are with autism depends on a lot of factors, not least of which is what society asks of you. If you have no other co-morbid health issues, high general intelligence, and have a strong support network, autism can be a boon: just look at all the billionaires who have self-identified as autistic. If you lack these privileges or the luck to grow up without trauma, it can render you unable to work, or land you on the wrong side of the criminal justice system. To the extent that autistic people are disabled, we are disabled by society, not ourselves. It was not built for us, and we should not be surprised to see that we cannot function in it easily.
Some classic diagnostic criteria focus on black and white thinking, when in all my time talking with autistic people I’ve found them no more or less open to nuance than allistic people. We see nuance in a different way, though, and I think a lot of our communication is missed. This might be best explained by example.
There’s a famous quote, attributed to multiple people: “If you’ve met one autistic person, you’ve met one autistic person.”
Autistic kids are often sticklers about recycling in their families. The nuance their parents see that they do not is that sometimes recycling is difficult or impractical. The kid doesn’t understand this: they know the rules, and do not see difficulty as a reason for a rule to be broken. If you truly want to change a typical autistic person’s mind, you need a real reason. In my experience, autistic people are perfectly willing to break rules when there’s cause for it (in this case, maybe explain that most recycling ends up in the landfill anyway, or that if you can’t get your plastic clean enough they can’t accept it). Of course, like all people, autistic people are not a monolith – it’s possible you just know a very stubborn autistic person. There’s a famous quote, which I’ve seen attributed to various people: “If you’ve met one autistic person, you’ve met one autistic person.” It’s true.
Some people frame autism as a tragedy. This is predatory and dangerous. I can’t say for sure whether I’d rather my brain be different, but I think I wouldn’t. It would be easier, and I look forward to a day when I’ve developed even more coping mechanisms to handle myself even better, but I don’t think eliminating autism is possible or good. Changing this aspect of myself would mean changing my entire personality. Should we design ways to eliminate introverts, just because extroverts succeed more easily? Or evening people, just because morning people run the world? Of course not.
I am happy with the way I see the world. I think the world would be better if more people saw it the way I do.
I am intentional and deliberate. I have been forced to view the entire world with a scientific mindset my whole life, seeking to understand why things happen the way they do, trying to find patterns, since I have to consciously determine associations and social patterns that neurotypical people make without trying. I almost automatically question things that many people take for granted. No two autistic experiences are the same, but this is true of all people. Not all autistic people will agree with me that they don’t wish to change. But for me, autism is integral to how my mind works, and I think it makes me a better person.
It’s 60F in my apartment right now and dark outside. The only lights are little tiny LEDs on a copper wire. I’m listening to the same playlist I have listened to, with very little variation, every night for the past year.
And you know what? This makes me happy. I can’t be overstimulated here, or startled, or confused. I have space to be creative and flexible because the things that I can control have been controlled. If you had a conversation with me right now, you never would guess that anything is different about my brain.
As my partner told me that night when I panicked about whether getting diagnosed meant giving up, or whether I was faking it all, I’ve always known I was different. Now I just know why.