Tag Archives: autism

The Girl And Her Autism

Once upon a time, there was a girl with autism who lived in a building with houseness in an area with citydom. The girl and her autism lived with her person with motherness and person with brotherness, plus two animals with ferretness. Often, the girl with autism called the person with motherness “Mother,” but we will not do that, because we know that a person with motherness is far more than just her motherness, and she must not let her motherness define her. In fact, a person with motherness may have daughterness in addition to motherness. She may even have sisterness, auntness, grandmotherness, granddaughterness, friendness, occasional-visitor-to-the-local-farmer’s-marketness, and owner-of-a-large-collection-of-keychains-from-various-places-around-the-world-ness. But above all, she is a person, and we will refer to her as such.

The girl and her autism spent her days at an institution that had schoolness but was not defined by its schoolness, accompanied by people who had teacherdom and those on the student spectrum, but who were most certainly not teachers or students – remember, people come first. As is often said, if you’ve met one person with teacherdom, you’ve met one person with teacherdom, and the girl with autism had found this to be the case. Certain people with teacherdom appeared to be interested in subjects with scientificity, while other people with teacherdom preferred topics with languages-that-are-foreign-ism. Of course, this is only further evidence that there is no single kind of teacherdom, which is why we must recognize that a person with teacherdom is far more than just their teacherdom. It is unfortunate that they have teacherdom, but people with scientistness are working on a treatment for teacherdom so that soon, teacherdom will no longer exist, and in the meantime, we will forcefully acknowledge that even though many might say that having teacherdom makes a person less of a person, we don’t think that, which is why we put the teacherdom after the person and never, ever call them a teacher.

At the institution with schoolness, during periods of time with recessdom, the people with studentness entered the area with playgroundhood to play activities with gameness. The girl with autism frequently played with a boy who had a name (but of course, he was far more than just that name). Once, the girl with autism had learned the name of the boy with a name, but she promptly forgot it, telling him that she didn’t see him as a name, but rather, as a person. The boy had a personality with extrovertedness, and he could be said to be on the extroverted spectrum. He enjoyed doing things with playfulness with other people with studentness, and frequently asked other people with studentness to do things with playfulness with him. Fortunately, the people with studentness recognized that the boy on the extroverted spectrum was not defined by his extrovertedness and ought to be treated as a person first, and they reminded themselves that his extrovertedness was not who he was as a person, and therefore refused to tdo hings with playfulness with him. This gave the boy sadness, but it did not make him sad, because even though he had sadness, he was still a person, and we must always remember that.

During those periods of time with recessdom, as the many people with studentness acknowledged that the boy on the extroverted spectrum with sadness was more “person” than “extroverted” or “sad,” the girl with autism enjoyed playing in the area with plants with flowerness. When she was a girl with youngerness, the girl with autism enjoyed pointing to the many plants with flowerness and identifying their colors, but the people with teacherdom quickly taught her that the plants with flowerness are not defined by their shapes, colors, or sizes, and that we can never forget the fact that they are plants, above all. Now, all of the plants with flowerness looked the same to the girl with autism, and she had almost forgotten what that sound with wordness–“color-”meant at all. Sometimes, she gave liquid with waterness to the plants with flowerness, making sure to give amounts with equality to every plant with flowerness, for after all, they were all plants, and they all had to be treated as such. Following this, some of the plants with flowerness received too much liquid with waterness, and others received too little liquid with waterness, and many died. But the girl with autism had contentness, because she knew that even if they had deadness, the plants with flowerness were still plants, first and foremost.

After the time with recessdom and the periods of time with classness, spent in rooms with classroomness at seats with chairness learning about things with educational-value-ness, it was time for the girl with autism to return to the building with houseness in the area with citydom. Many of the periods of times with dayness, it almost seemed to her as though the building with houseness to which she returned was not quite the same as the building with houseness to which she had returned the previous period of time with dayness, but it was still a building first, so she did not mind, and occasionally, she wondered if the person with motherness whom she saw in the building with houseness was the same as the person with motherness she had seen during previous times with dayness, as the person with motherness had hair of a different color and a face of a different shape and a height of a different amount, but the girl with autism quickly put such ideas with thoughtness out of her body part with headness, remembering that all persons with motherness are primarily persons, and that even if the animals to which she returned did not quite resemble animals with ferretness, they were still animals, above all, and even if the person with brotherness did not appear to be the person with the same brotherness or with any sort of brotherness at all, he was still a person, and sometimes the girl with autism even wondered if she herself was the same girl, or rather, the person with girlness, but all persons are persons first and all persons are fundamentally the same and in fact, they are not so much persons as creatures with personness, or rather, organisms with creatureness, or rather, particles with organismness, or perhaps they should just be called particles, because after all, we must never forget that they are particles and that their particleness comes first and if you find this conclusion to be utterly outrageous then please, please, please just call me “autistic.”

My Anorexia Stories

Usually, it goes like this. The videos are set to “Skinny Love” – the Birdy version, never Jon Iver. First come the childhood photographs, and wistful memories of normalcy (“I was a happy kid”). Then, around age 12, plus or minus two years, the slideshow takes on a more somber tone, as the subject inches closer towards illness. This might be prompted by physical changes brought on by puberty – acne, breasts, a formerly lithe body turned plump and curvy. Or maybe it’s the stress of middle school, or the death of a loved one, or cyberbullying. Shortly thereafter, the subject begins to eat less and less. At first, it feels good. The photos no longer feature friends or family members, just images of a person standing in front of mirror after mirror, growing thinner by the second. Sometimes, weights are listed for good measure. Then there’s rock bottom, in the hospital, perhaps with a feeding tube and IVs in both arms, and finally, the recovery, finding friends or spirituality or veganism. And all of these videos have the same title: “My anorexia story.”

My life, over the course of the past eight years, could easily fit into this sort of narrative. My experience hasn’t followed the exact trajectory described above, but really, no one’s has. This is a prototype, a combination of real and perceived stereotypes, distorted by what we choose to see (or not see) in ourselves, warped by our desire to stand out in a way that will also make us fit in. By telling our anorexia stories, we collaboratively form a collective narrative, to which we all contribute, from which we all take. I’ve thought about this a lot lately, as I’ve been writing this blog and describing my experience of autism and severe mental illness in fairly public ways. But every time I’ve sat down to write or tell my anorexia story, I find myself drawing a blank, because the truth is that I don’t have just one story. In fact, I don’t think any of us do. Instead, we have dozens, maybe hundreds. Some are boring (“I went to the grocery store. They didn’t have celery. Went to another grocery store. They had celery.”), while others never get old (“Remember when we all had to evacuate Malibu because of the fires and we ended up in an air BNB for two weeks?”). Some are sad and some are happy and most don’t fit into that kind of binary, but the point here is that realizing this is what enabled me to sit down and write this post, because I have lots of stories, and I don’t actually need to weave them together in the form of an all-encompassing saga. I’ll probably blog about this again. Or maybe I won’t. Either way, pressure’s off.

I got sick when I was 12. In retrospect, it made a lot of sense. I have a stereotypically anorexia-prone personality: obsessive-compulsive, controlling, harm-avoidant, perfectionistic, highly anxious. Then you add in a rare pain syndrome and a weird orthopedics problem, plus a couple depressive episodes, and there’s your perfect storm. Unlike most people I’ve met, I didn’t gradually “descend” into anorexia. (Interesting how we use these spatial metaphors.) I really did wake up one day and decide to stop eating. Incidentally, while this had to do with something I’d read, I don’t believe that books or online forums or movie or “the media” cause eating disorders. “Genetics load the gun, environment pulls the trigger.” Cliches are cliches for a reason.

Restriction, compulsive exercise, a lot of rules about food, medications, hospitals. Constantly fighting the doctors, losing weight, being forced to gain it back, losing it again, cheating the scales, rinse and repeat. Lots of psych labels thrown at me. I was being irrational, obsessive, perseverative, delusional. “You’re in denial,” one of the doctors told me, to which I responded, “No, I’m not.” I missed quite a bit of school, somehow managed to graduate on time, planned out my gap year only to have everything fall through because I was back in the hospital, yet again. Then more hospitals after that, medications that didn’t work, therapists wondering why I never made eye contact, why I was always covering my ears and rocking back and forth and muttering to myself.

That, by the way, is foreshadowing. (No one’s ever accused me of being subtle.) My autism diagnosis wasn’t the magical key that solved all my problems and I lived happily ever after the end, but it did make an enormous difference, enormous enough for me to eventually leave the hospital(s) and start college, which was something of a miracle. And now, a year later, I wouldn’t call myself the poster child for recovery, but my heart is beating an appropriate number of times per minute and I am officially not malnourished or dead. All in all, not too shabby.

I don’t want recovery to be a big part of my identity. To be clear, this is just my personal preference. For some, recovery is a fundamental part of who they are, and I have a great deal of respect for that. I know lots of recovered people who do amazing advocacy work to support individuals and increase access to treatment and go on walks to fundraise (which I’ve always found a little bit ironic), and I’m incredibly grateful for them. Right now, though, I’m not interested in being very involved with these kinds of initiatives. I am, however, very interested in the intersection of autism and eating disorders, because despite the fact that the two conditions frequently co-occur, there’s astonishingly little research on the subject.

Part of why my eating disorder was so hard to treat was because researchers have yet to develop clinical protocols specific to autism. The usual therapeutic modalities and systems weren’t designed for autistic people, but because so many clinicians didn’t realize I was autistic, they simply assumed that I wasn’t trying hard enough, or that I was untreatable. Doctors and therapists would tell me things like “your recovery is up to you” and “we can’t help you if you can’t help yourself.” In addition to being profoundly unhelpful, these statements made me feel awful, as I was essentially being blamed for having an illness, and they reinforced the very beliefs that were contributing to all my problems: that I was worthless, incompetent, a failure, and so on. This is why I’m now such a firm believer in the notion that patients don’t fail treatment; treatment fails patients. And although I don’t have the data to prove it, I have a strong suspicion that treatment fails many autistic patients, which is why I’m writing this post.

I have a lot of opinions. At any given point, there are at least 30 ideas swimming around in my head about what to write here or post on Tumblr or turn into an op-ed. There’s definitely an element of triage going on, as there simply aren’t enough hours in the day to get even a seventh of my words down on paper. But I hold onto the list and it comes in handy, so I always have something to write about. Thus, further posts about autism and anorexia might cover, in no particular order, the challenges of being autistic in group therapy, the difficulty of distinguishing eating disorder behaviors from autistic rituals, the role of autism acceptance in recovery, how residential treatment can be adapted to better serve autistic patients, some of my better treatment humor (a dietitian once told me I should do stand-up eating disorder comedy), reflections on what group therapy has taught me about other humans, and a ranked list of my favorite coping skills.

Oh, and that bit about evacuating Malibu during the LA fires? That really did happen. Early November of 2018. Hills burn in California… The 16-mile car ride to Santa Monica took eight hours, and everyone was happy we couldn’t stop for lunch. More on that later, if anyone’s interested…

Calling all autistics: let the Organization for Autism Research know what language you prefer!

The Organization for Autism Research is a big organization with lots of money and influence.

(According to their 2019 financials, their assets = $2 billion.)

They are reevaluating their use of person-first language based on input from autistic people.

You can fill out this quick survey to let them know if you prefer being called “autistic” or “person with autism.”

They are not an autistic-led organization, but the fact that they are soliciting input from #actuallyautistic people is promising…

All About Interoception

In the autism community, we talk a lot about exteroception, a word that describes sensory input outside the body (noise, light, smells, tastes, textures, etc.). But we don’t talk nearly as much about interoception, which is the perception of sensory input from inside the body. It involves perceiving hunger, thirst, fatigue, pain, when you have to go to the bathroom, body temperature, and more. Impaired interoception is a very disabling element of  autism for me, so I figured I’d write a post about it, and maybe it will resonate with and help others. If any of these apply to you, you may have poor interoception:

  • You have difficulty knowing when you’re hungry. Maybe you forget to eat.
  • You can’t tell when you’re full. You eat past the point of being satiated.
  • You often find bruises and scratches on your skin, but you’re not sure where they came from.
  • You find it hard to identify your own emotions.
  • You have trouble knowing when you do/don’t need to go to the bathroom.
  • When you don’t feel well, you’re not sure exactly what’s wrong or what type of pain you’re experiencing.

Here are some strategies to improve interoception/manage impairment:

  • I have found yoga really useful in this domain. Especially when you have a good teacher, much of yoga is focused on directing your attention to specific parts of the body, and you end up engaging tiny muscles you never knew existed. Instructors also explain some anatomical information, like how body parts are connected, which is both interesting and valuable to know. And yoga has helped with other autistic challenges I experience, too–like knowing where my body is space, distinguishing right from left, performing coordinated movements, and breathing. There are lots of great free classes on YouTube.
  • Mindfulness/meditation can be good for similar reasons. They teach you to observe the sensations in  your body, and if you practice regularly over time, you can start to notice patterns and develop associations between sensations and physical states (e.g., “when my head hurts and my lips are dry, I am thirsty and I should drink water”). I especially like body scans, where you focus on one body part at a time.
  • Calming sensory input, like deep pressure (weighted blanket!), swinging, rocking, spinning, jumping on a trampoline, and so on.
  • Changing positions frequently. I’m writing this on my laptop. I’ve been sitting like this for about an hour and a half, and I just now realized that my shoulders sort of hurt and I think I might be thirsty? Maybe? Changing positions at regular intervals forces you to pay attention to your body, if only a bit.
  • I set an alarm on my phone to remind me to drink water throughout the day. I have two bright pink water bottles, each with a capacity of 25 ounces. If I finish one before noon and one after noon, then I’ve had enough water for the day. And the bright pink part makes them hard to lose.
  • Stretching for a few minutes a few times a day can be good.
  • Poor interoception is strongly correlated to alexithymia (not recognizing/understanding your own emotions). Presumably, techniques to deal with alexithymia may also improve interoception.

Falling Anvils, College Dorms, and the Importance of Accessibility

What’s the difference between an anvil and a college dorm?

There are probably a lot of clever answers to this question that I haven’t thought of (yet?), but here’s my response: both of them can make me 12 times more disabled in less than a second.

The anvil scenario is easy to envision (and highly improbable, statistically speaking…thank goodness). Anvil falls on my leg, head, arm, whatever. Cue injury, rush to the ER, doctors are super confused because like where do you even find an anvil these days…actually, I don’t think I’ve ever seen a real-life anvil; I just remember them from Club Penguin…but we’re getting off track. Anvil leads to injury leads to disability.

The college dorm scenario is a bit more nuanced, although I suppose that if a dorm building were to literally collapse on top of me, that might result in some injuries, as well. But I’m not talking about physiological damage or any sort of damage, actually. Remember, there are two critical components of disability: impairment and social context. Disability emerges as the result of impairment in social context. Change the impairment (anvil accident), and you change the disability. Change the impairment (walking into a college dorm), and you change the disability, especially when that disability is autism. We have this term in the autistic community to describe the worst sensory experience, or combination of sensory experiences, imaginable: sensory hell. Amusingly–at least, I find it amusing–one autistic’s sensory hell can be another’s sensory heaven, but I digress. My college dorm freshman year was maybe the fourth or fifth circle of Dante’s inferno, if Dante were autistic. People screaming. Automatic flushing toilets (horrible sound, too loud, have to cover my ears, automatic ones don’t give me time to cover my ears, they’re startling, I sort of worry they might just swallow me whole one of these days, that kind of thing). Those hand dryer things that blow air onto your hands and that, in addition to being way too loud, seem like a terrible idea given the pandemic. More people screaming. People responding to other people’s screams–by screaming. Someone’s rap music. Someone else’s rap music. A third person’s classical music. A veritable cacophony. And those are just the sounds–don’t get me started on the visual stuff, or the smells. So that’s part one of why I’m more disabled in the dorm: sensory hell.

Part two is the humans. To be clear, I actually really like most of the people in my dorm. As for the ones I don’t like, I just haven’t really met or talked to them, so it’s hard to form an opinion, but I’m sure they’re great. The issue isn’t quality, but rather, quantity. I have a very limited capacity to socialize. Interactions that might seem minute and insignificant to most people, like just saying hi to someone in the hall, are draining to me. If I have to say hi to one person I don’t know once a day, that’s not a big deal, but when I’m living with 79 other kids and I’m going to and from my room at least five or six times a day and running into at least five or six people each one-way trip, I’m expending maybe 25% or even 30% of my social capacity – without even doing what most people would consider socializing. When I max out my social capacity, the result is a shutdown or a meltdown. I lose the ability to talk, get very confused and disoriented, have anxiety attacks, forget how to breathe…all sorts of delightful stuff. The disability arising from the humans in the dorm is thus twofold. The socializing itself is hard and confusing in the moment, but then cumulatively, it takes an enormous toll on my ability to function. I might not “look autistic” as I pass you in the hall, make eye contact briefly, smile, and say “hi,” but fast forward eight hours later, mid-meltdown, and I am undeniably autistic.

Actually, maybe undeniably isn’t the right word to use, because sometimes, I do deny it. When I’m thinking clearly, I recognize that there’s no such thing as “looking autistic,” that the majority of people barely understand autism at all, and that my autism is particularly hard for people to understand because it doesn’t fit into the usual stereotypes. At the same time, though, I’ve internalized plenty of harmful beliefs about autism, as well as the tendency to question the validity of a person’s impairments (“Well, you look fine to me”) and to frame disability as an obstacle that can be overcome through willpower alone (“The only disability in life is a bad attitude!” “Nothing is impossible! The word itself says ‘I’m possible!’”). When I’m outside of the dorm studying in a quiet space and I’m not having a shutdown and I’m not wildly anxious and my thinking is organized and my mind is clear, I don’t feel that disabled. And if I let myself, I start to fall down the rabbit-hole: “Wait, am I really autistic? Am I disabled? I mean, look at me now. I’m fine, aren’t I? I’m totally fine! So why do I have these accommodations? I don’t need them. Do I even need meds? I’m faking it, aren’t I? If I push myself hard enough, I’ll be fine…”

The irony, of course, is that the further I pursue this thinking, the more distressed and distraught and therefore disabled I’ve become. And then, in this distressed state, I enter the dorm and for all the reasons stated above, it’s going to be one hell of an evening. This is why I’m so adamant about disabled as a verb. This is why we need to interrogate the concept of disability; why we need to move past superficial assumptions; why we need to examine not just whether someone is disabled, but where and when and how and by what. The false dichotomy of disability/ability is an extremely poor reflection of life. Disability isn’t static. It’s not a characteristic inherent to a specific human, but rather, an emergent property of circumstances, many of which are beyond an individual’s control. The fluctuating nature of disability is baffling and frustrating to disabled people (and to abled people, too), and it prevents us from fully understanding and articulating our own needs.

Morever, failing to acknowledge these nuances is often a cop-out for others. If you believe that someone either is or isn’t disabled, and that that disability stays more or less the same over time, then you end up inadvertently or deliberately deflecting responsibility. You don’t see the ways in which you could make a certain environment more accessible. You minimize your own agency, and then the onus of managing disability falls entirely on the disabled person, which is of course deeply unfair. This is where the individual model comes in, the notion of disability being a single person’s problem. I recently read a post on social media written by someone in a wheelchair. They described going to a movie theater that had ramps and elevators, but where the seats were too close together for a wheelchair to actually fit in any of the rooms. Whoever designed that theater chose not to invest in accommodating disabled people. They did accommodate abled people, because that’s the whole point of a movie theater. In doing so, they sent the very clear message that abled people’s needs matter more. That disability isn’t their problem to deal with.

Would embracing a social model of disability have solved this particular movie theater issue? I’m not sure. The world is complicated. Most solutions aren’t that simple. But the more we, as a society, are able to understand how and when and why and where someone is disabled, the more we can do to actively include everyone and work towards universal accessbility. The more we recognize that disability really does affect everyone, because even if you, the person reading this, are not disabled, I’m guessing you know someone who is, and as you grow older, you might become disabled in ways you’re not thinking about now. I’m not trying to be morbid here–that’s the whole point. Disability doesn’t have to be this huge scary daunting thing that it is to many folks at the moment. If we can accept and recognize and work with the fact that disability is a natural part of the human experience, everyone benefits from this work. Whether it’s reconsidering dorm environments or dodging falling anvils, everyone has a role to play in disability rights and justice.

Neurodiverging

A three-panel Calvin and Hobbes comic. Calvin and Hobbes are walking in the snowy woods. In the first panel, Calvin says, "I like to verb words." Hobbes says, "What?" In the next panel, Calvin says, "I take nouns and adjectives and use them as verbs. Remember when 'access' was a thing? Now it's something you do. It got verbed."

In the third panel, Calvin says, "Verbing weirds language." Hobbes says, "Maybe we can eventually make language a complete impediment to understanding."

This post starts the way a lot of things in my life start these days: on etymonline.com, which has kindly informed me that the verb “[to] diverge” took on its current meaning in the 1660s as the opposite of “converge,” originating from the Modern Latin divergere, “go in different directions,” from the verb vergere, “to bend, turn, tend toward,” which in turn comes from the Proto-Indo-European root *wer-. (*wer– is also the root of words like controversy, worry, prose, wrinkle, and vermin.) Merriam-Webster adds that “diverge” is an intransitive verb meaning “to move or extend in different directions from a common point; draw apart.” Add on the prefix neuro-, and a new verb is formed.

Neurodiverge, verb. To differ markedly from neurotypical standards, consciously or unconsciously, visibly or invisibly, occasionally or perpetually.

I neurodiverge. I don’t make friends the way you make friends. Actually, I don’t make friends at all; friendships just sort of happen, and I’m usually a little unsure as to how or when or why, but when someone is my friend, then we aren’t BFFs, because I consider the ranking of friends to be almost antithetical to the concept of friendship, but we are FFs, if you insist on acronym, because I am hard to get rid of. (Actually, let’s just scratch that acronym, because I have a feeling that, like a lot of emojis, it probably has some R-rated meaning that I don’t know about and don’t particularly want to learn.) Anyway, my friendship with you will involve a lot of random text messages regarding my latest sudden-onset special interest, and then there will be stretches of time – days, weeks, even months – where we don’t talk at all, and don’t worry, we’re still friends, it’s just that the number of people I want to stay in touch with far exceeds the number of people my brain can keep track of at once. There will be gifts, because gifts are a good way for me to be your friend while still conserving my limited social energy, and there will not be much subtlety, because no one has ever accused me of being subtle. But it’s gonna be alright, because I’m a loyal friend, and even when I’m not able to interact with you in the typical way, I’ll make you Spotify playlists. I neurodiverge.

Neurodiverge, verb. To develop neurologically in a different direction.

You neurodiverge. I haven’t really met you, but you’ve probably walked by my house at some point, and I’ve probably driven past yours. Maybe you went to, the same elementary school as me, or your brother or sister did, or my mom knows your mom, or my mom knows someone who knows your mom, or my mom knows someone who’s your neighbor, or my mom knows some other person who is, by a few degrees of removal, relevant to you. (My mom knows a lot of people.) Anyway, we’ve never been introduced, but I can imagine bits of you. You probably hate small talk, like me. You’re not really sure why everyone speaks so much and says so little about the weather. Maybe you don’t like talking, or you don’t talk at all. It might be that you hate loud sounds, the way that I do. Or you can stand the itchiness of that tag at the back of your shirt, or the hideous buzz of fluorescent lights, or the texture of chicken nuggets. You might not have a lot of friends, and you might not want a lot of friends. I’m guessing a lot of people don’t understand you, because unfortunately, that’s often how it goes. The adults in your life probably have a lot to say about you. What’s different about you. What’s “wrong” with you. Maybe they say you don’t look at their eyes enough, you walk on your toes all funny, your voice is too loud, your smile’s too quiet, you feel too little, you worry too much…But here’s the thing: those people are so wrapped up in their own ignorance that they forget the simple fact that you are who you are, how you are. You are autistic, you exist autistically, and that is wonderful. You neurodiverge.

Neurodiverge, verb. To separate from a neurotypical route.

She/they/he/it neurodiverge(s). I love the way Emma Zurcher-Long neurodiverges. Her writing is so vivid and hypersensorial and beautiful, and she’s such an incredible advocate. So unapologetically herself. What an amazing human.

And Lydia X.Z. Brown? I wanna be a seventh as brilliant and fearless as they are when I grow up. They neurodiverge in the best directions possible. Honest, I think their blog is the best thing ever to have graced the Internet.

A lesser known but no less wonderful autistic: Jack! He was 11 in 2014, when he was interviewed in a piece on Thinking Person’s Guide to Autism, which I guess makes him 17-ish now, but that was one of my favorite interviews ever:

“Q: What are some things you avoid whenever possible?

“A: I. Avoid. Any. Means. Of. Losing. My. Cat.”

This kid neurodiverges like a boss. (Like a boss? Like a badass? Is that what they say? Slang is confusing.)

Neurodiverge, verb. To differ markedly in ways of thinking.

We neurodiverge. My favorite conjugation. In high school, my friend Anna and I co-founded and ran the Kindness Club. Over the course of those four years, we neurodiverged constantly, chaotically, gloriously. We are, in certain ways, polar oppposites. Anna is spontaneous, wildly creative, highly distractible. Woodworker, rider, avid collector of puppets. I am obsessive, neurotic, word-hungry, laser-focused (though I struggle with the laser-cutter). Aspiring polyglot, toucan fan, not to be trusted with any sports that require hand-eye coordination. There is nothing typical about either one of us, and together, we neurodiverge in the most hilarious and unexpected ways possible. The Kindness Club was Anna’s idea, and really, it deserves an entire post, if not several posts, of its own, but over the course of high school, we did everything from writing a computer program to automatically send get-well-soon emails to students who were home sick to “kindness-flooding” the desks of various teachers and administrators to sticking lollipops in every backpack on campus. Anna was the person who introduced me to the notion of kindness as a way of life, and to an excellent Aesop quote: “No act of kindness, however small, is ever wasted.” This stuck with me (as did Anna, by the way – we’re still good friends!), and honestly, I think kindness is more important than anything. This summer, Anna’s recreating an Incan method of telling time and perhaps something to do with a quipu, while I’m going to attempt to write a poetry collection based on patterns in psychotic speech. We neurodiverge.

The point of all this? Well, first, I have cool friends. But the main thing is that I’m not just neurodivergent, I’m neurodiverging. Sometimes it’s graceful. Often, it’s not. I don’t neurodiverge in a single direction, but rather, many. Sometimes, I neurodiverge without direction. Remember, the verb is intransitive. The act of neurodiverging lies solely in the agent. Neurodiverging cannot be done by, for, or to me. It is unaccusative, imperfective, continuous, progressive. I am its only argument. It can be conjugated, but it can’t be made passive. Even when it’s unconscious, I embody neurodivergence in everything I do.

Postscript: A rewrite of Divergent as Neurodivergent sounds amazing…I might have to do that one of these days.

Zoom University, Autistic Edition

THIS MEETING IS BEING RECORDED.

A sticker reading, "zoom university, est. 2020" in blue-outlined block letters meant to mimic the logo of a real university.
[Image: A sticker reading, “zoom university, est. 2020″ in blue-outlined block letters meant to mimic the logo of a real university.”

I have been doing school online for approximately five weeks now. My school runs on the quarter system (one quarter = 10 weeks = many-a-headache), and fortuitously, everyone’s having to leave the dorms coincided with the week before finals. I use the term fortuitous with the obvious caveat that nothing about this pandemic is fortuitous, but in my opinion, it was better to have this happen towards the end of the academic quarter than, say, right in the middle. Professors were much more lenient about grading policies, final exams were made optional (or maybe canceled, I can’t remember), and although I doubt anyone had a good spring break, we at least got some time off to…I don’t know…try not to think about the catastrophe at hand. Then, of course, spring break was over, and now we are in spring quarter, and I have some thoughts about doing school – and life – online as an autistic.

Accommodations aren’t accommodations when everyone needs them.

Many other disabled people, particularly those with chronic illness, have written about this elsewhere on the internet: accommodations that are essential for people with disabilities to be able to participate in academic settings were often difficult to obtain or (supposedly) impossible to arrange…until covid hit, and suddenly, attending classes via videoconference and recording lectures and using assistive technology are options for everyone. There’s a lot to unpack here in terms of what this tells us about how our society treats disabled people (spoiler: poorly) and what this might mean going forward, but I’m going to focus on my own experience. I’m really lucky to go to a school where my needs and accommodations have been taken very seriously, and I have experienced much respect and compassion from administrators, professors, and various staff, for which I am extremely grateful. Thus far, my professors’ attitudes have always been, “You want to learn and I want you to learn, so let’s figure out the best way to make that happen given your abilities and limitations,” which is amazing. Professors have also been very respectful of my privacy; I’ve disclosed more details of my being autistic to some professors, and I did just write an entire op-ed about it, so it’s not exactly a secret, but I’ve never felt pressured to explain or justify my need for accommodations. Again: I’m extremely grateful. Given all that, classes on Zoom are, in many ways, a lot better for me than the in-person format. Here’s why:

  • Volume control. I think we’ve all wished, from time to time, that the world (or certain people) came with a mute button, but my sensitivity to noise is disabling as well as annoying, and overexposure to certain types or amounts of noise can leave me feeling physically ill. Thus, being able to turn down the volume on classes and lectures has been immensely helpful in managing sensory input.
  • Typing and speaking. With the exception of my language classes (Russian and Spanish), all of my instructors allow students to participate in conversation through the chat function on Zoom instead of by speaking, if we so choose. This is essentially the standardization of what was an accommodation for me. In person, I would use a text-to-speech app on my iPad to participate in class during nonverbal episodes. Via Zoom, I can type in the chat, which is just as accessible, but less conspicuous. Using my text-to-speech app in class was especially hard for me the first few times. I have definitely internalized a lot of the ableist notions about what kinds of communication are supposedly valid, and there’s also the prevailing assumption that if you can speak some of the time, you can and should speak all of the time, which isn’t the case for many people (including, but not limited to, autistics). Long story short: I’m still trying to get comfortable with using text-to-speech technology, but in Zoom classes, where it’s the norm, I have much less anxiety around it.
  • Recording. Every single Zoom meeting I enter begins with a threatening digital voice informing me that the meeting “IS BEING RECORDED.” (Hence the opening zinger of this post.) Pre-covid, I had an accommodation that allowed me to make audio recordings of classes using a personal device. I typically did this when I wasn’t able to focus on what was going on and needed to be able to review said recording later, when I could think straight. And to be clear, accommodations are for disabilities. This isn’t an “oh I feel kind of distracted today and I’m tired because I didn’t get much sleep over the weekend” thing. This is a matter of “I have documented disabilities that lead to significant functional impairments.” Now, all meetings ARE BEING RECORDED – I’m not sure what the administration does with them – but students with this particular accommodation are allowed access to the recordings for reasons already stated.
  • Flexible attendance. Again, an accommodation that certainly existed prior to Zoom, but was a lot more difficult to negotiate, especially since certain disabilities are episodic conditions, and one might be expecting to go to class and then have an episode occur at the last minute. Now that students are dispersed across the globe and in many time zones, there’s technically no requirement to attend lecture classes at all – videos are posted online for us to watch, or not watch, at our leisure – and several of my discussion section leaders allow students to post written responses on a forum rather than attending live.

Moral of the story: I’m lucky not to face this issue as much as most disabled people do, but when disabled people need accommodations, they’re very hard to get. When non-disabled people need them, suddenly, they are magically available for all.

I heart social distancing.

I’m thinking of doing a separate post on this term I came up with, “microinteractions” – the tiny tiny social interactions that probably have little effect on most, but that add up and exhaust me over the course of a day. Let’s say most neurotypicals, on the average, start the day with 100 units of social currency. I have, maybe, 50. Each social interaction costs a certain amount, even the small ones. So a typical morning living in the dorms for me might look like this – and bear in mind that my baseline expenditure is already way lower than most people’s because I don’t text many people, I eat meals alone, I walk to class alone, I do homework alone, I do most things alone:

  • 5:00 – 7:30. I wake up. (Yes, I know this is super early and I’m weird.) I study for a couple hours. Total units consumed = 0.
  • 7:30 – 8:00. I walk over to the dining hall to get breakfast. I say hi to the staff in the dining hall (1 unit). I walk by someone I know and sort of smile vaguely in their direction (1 unit). I finish breakfast and leave the dining hall. Total units consumed = 2.
  • 7:45 – 10:00. Back to the dorm and to my room. On the way, I pass two of my fellow dorm-mates in the halls. More smiling, waving (1 unit). I study for a few hours. Have to answer some emails and figure out what I’m saying sounds appropriate, not too direct, but not too vague, and the right level of formality (2 units). I respond to texts (I am so bad at responding to texts on time), which, even though I love my friends, is draining and nerve racking (3 units). Total units consumed = 8.
  • 10:00 – 10:30. I take a shower. As I’m going into the bathroom, I open the door, but then at the same time, someone else is opening the door from the inside. Cue brief, awkward, innocuous moment that still heightens my blood pressure somewhat (1 unit). Total units consumed = 9.
  • 10:30 – 1:30. I walk to class, skirting bikers, skateboarders, and various people I know and like but am still too anxious to converse with (1 unit). I participate in my Russian class for two hours, and somehow, socializing in Russian is easier than in English, but I have to figure out when it’s my turn to speak in the conversation (1 unit/hour x 2 hours = 2 units) and do my best to filter out background noise when our class splits up in pairs and I do exercises with a partner (3 units). Another awkward door-holding moment on the way out of the building (1 unit). I get two texts from a friend (1 unit) and someone says something on our dorm’s group chat and I decide to respond, but I’m never sure if what I’m saying will be interpreted as really funny or really weird/confusing (3 units). The pharmacy calls me and I freeze, feel my heart rate rise, and consider hiding under a table because phone calls are scary (2 units). (Ironically, the pharmacy is calling because they have my anxiety meds which are the exact thing that will make everything less scary.) Total units consumed = 22.
  • 1:30 – 3:00. I walk back to the dining hall to eat lunch, and now that everyone else is awake and alert, there is even more bicycle-dodging (2 units), awkward door-holding (2 units), waving and saying hi to people whose names I can’t really remember (3 units), and anxiously anticipating people’s response to my message on the chat (2 units). Walk to my next class at 3:00. Total units consumed = 31.
  • 3:00 – 4:20. Lecture. Waving/door-holding/small talk (3 units). Trying to raise my hand and then getting nervous when I talk and wondering if I am asking too many questions (2 units). Asking the professor a question about my essay and trying not to infodump, since this is a psych class and it’s about schizophrenia, my special interest (3 units). Total units consumed = 39.
  • 4:30 – 5:20. Discussion section. Desperately trying not to infodump (4 units), not being sure when I’m supposed to talk in the conversation (3 units), and trying to read people’s faces to see if I’m talking too much (2 units). Total units consumed = 48.

Notice how by 5:30 or so, I’m almost at my max, and by most people’s standards, I haven’t even socialized. I haven’t had lunch with a friend (7-8 units) or a group of friends (9-12 units) or, heaven forbid, a group of friends and people I don’t know (15? 16?). I haven’t talked to someone on the phone (3-4 units) or gone to office hours (2 units) or FaceTimed someone (5 units). So even at my very solitary, mega-introverted baseline, I am almost out of social currency by 6 pm. And when I do run out completely, it’s not pretty. Nonverbal episodes, insane anxiety (yes, I know what the word insane means; yes, I’m using it deliberately), shutdowns/meltdowns, disorganized thinking, etc. But when I think about a typical day doing school from home, aside from my classes and interactions with other people digitally, I expend, maybe 15 units a day. (Interacting with my family doesn’t cost anything, just because I’ve known them my entire life and they are used to my Lucyness.) As a result, I have so much more energy to put into writing, blogging, learning languages, putting markers in jars of water and seeing what happens, and so on. I don’t know that being isolated has done wonders for my mood, and I think at the end of the day, the units I expend living in the dorm are worth it. Nevertheless, I have a lot more energy lately, and I’m trying to capitalize on that.

Sometimes, obsession = motivation.

I read a fascinating post on the blog EmbraceASD a few weeks ago about autistic work ethic. The post referenced scientific data that confirmed things I already knew about myself: I am very, very persistent at tasks that matter to me; I would often rather work than socialize; I have a high tolerance for repetition; and I’m willing to keep working to achieve a goal even if it’s not immediately rewarding. These traits are some of my favorite parts about being me/being autistics. They’ve enabled me to learn languages, write stories and novels (bad novels, but novels nonetheless), amass a huge knowledge of the transdiagnostic dimensions of psychosis, and doggedly pursue various other interests over the course of my life. Now that school occurs entirely in the cybersphere, being this motivated is a huge advantage. Grades are pass/fail, lecture attendance isn’t technically required, you can be muted in terms of both audio and video in many classes…there are myriad reasons for students to be more distracted from and put less effort into schoolwork. But because pretty much all of my classes are related to my interests, I am persistent to the point of obsessive when it comes to assignments and participation. My hyper-focused, very rigid, deep-interest tendencies are an advantage in this setting. However, there’s a catch, as there always is…

Grades are stressful, even when they don’t exist.

I’m taking a heavy course load this quarter. I had a reduced course load in the fall, which I don’t regret – transitioning to life on campus was stressful enough – but that means that if I want to graduate within four years, I have to make up for that during other quarters. When I learned that grades would be pass/fail, I decided to sign up for the max number of units allowed (academic units, not social units). I ended up dropping a class, but I’m still just one unit under the limit. I thought that because there wouldn’t be grades, I’d spend less time freaking out about the quality of my work, and I might be a little more flexible in terms of letting myself turn in not-perfect-but-good-enough assignments. Not so. I can get myself worked up over anything, and because I care so much about school, it seems that the lack of grades has in no way curbed my obsessionality (this is a real word, even if autocorrect disagrees). This is why I am going to end this post here to go and study. Eye roll, long sigh…

This is the difference between respectful and disrespectful autism therapy

Disrespectful

Therapist: Why are you flapping your hands like that? That’s weird. Stop it.

Me: [Says nothing, stops flapping hands, thus losing a valuable tool for coping with overwhelming emotions and sensory stimuli. Spends I-don’t-even-know-how-many years using other, extremely unhealthy coping mechanisms that take an enormous toll on my physical and psychological health. Finally gets diagnosed with autism at age 18, rediscovers stimming, still has to grapple with internalized ableism before embracing autistic self.]

Respectful

Therapist: You’re flapping your hands a lot today. Are you feeling more anxious?

Me (very alexithymic): No. I don’t have feelings. Do you like dogs?

Therapist: Yes, everyone likes dogs, but I do want to talk about the hand-flapping. I know it feels good to you and it helps you handle your anxiety.

Me: Damn straight.

Therapist: Yeah, so I’m not telling you that hand-flapping is bad. I’m just curious about what’s making you anxious, because maybe there are other things you could do in addition to stimming to cope with the anxiety effectively.

Me: I like dogs.

Therapist: Yes. We have established this.

Me: Why are you telling me to stop flapping my hands.

Therapist: That’s not what I said. [repeats above. Sometimes it takes me a few rounds to fully process what therapists are telling me…]

Me: I am anxious because I have seventeen million assignments to do and my dorm is too loud and in my discussion section today someone said autism is an illness and autism is not an illness.

Therapist: Agreed. So let’s talk about those things. There’s nothing wrong with stimming, but most people don’t understand autism, so they might misinterpret your hand-flapping. It’s totally up to you when and how you stim. My job is to help you understand how they might perceive it and think about other forms of stimming and ways to cope with anxiety, so you have all the information to make those decisions for yourself.

Me: I like dogs.

Therapist: Yes, Lucy. You like dogs.

Notice that…

  • The goal here isn’t to make me act less autistic. The goal is for my therapist to understand my experience and perspective and then work with me to manage my anxiety. The anxiety is the issue here, not the stimming.
  • Therapist recognizes that I get to decide how I want to act. They ask questions and offer ideas rather than telling me what to do. It’s a conversation, not a command.
  • Therapist explains a bit about the way other people might perceive my stimming. This is helpful to me because I usually don’t have a good grasp on how other people perceive me (Theory of Mind!). Now that I have that information, I’m better prepared to figure out when, where, and how I want to stim. For example, flapping my hands in a job interview might get misinterpreted, and that could be a problem. Flapping my hands in a coffee shop might get misinterpreted, and I don’t see that as a problem. If I can spend 99% of every minute of every day stumbling through neurotypical-world, other people can deal with the aspects of autism-verse that might make them uncomfortable. They will be just fine, I promise.
  • Therapist understands my atypical ways of communicating (e.g., asking questions without much intonation, not understanding what they’re saying the first time, dog echolalia/fixation). Because they understand how I communicate, they adjust their own communication style so that our conversation is useful for both of us.
  • Therapist supports and accepts me as I am. They don’t see autism as a bad thing. They respect and honor my identity. They want me to be myself. Ultimately, this is the most important thing, because given the number of psych professionals I’ve seen who haven’t respected my identity, I’m very wary and weary of such professionals. I need to know that someone will accept me for who I am before I even start to open up to them about anything except for me liking dogs. (And even that isn’t a guarantee…)
  • Therapist acknowledges that I like dogs.

If I’m Your Friend

If I’m your friend, I might not respond to your text messages within a few days or even a few weeks. I might not do a good job of taking turns talking in a conversation, and I might talk so much about my interests that sometimes, I forget to ask you about yours. I might not go to any parties you host and I might not answer the phone when you call and I might not have all the right words when we talk and I might not have the bandwidth to spend as much time with you as I like, but I will…

…send you gifs, memes, and random links to websites I think you might enjoy.

…make you entire playlists based on your personality, my Spotify recommendations, and whatever single Phoebe Bridgers just released.

…put time and thought and sustained effort into understanding what you’re experiencing, whether or not I relate to it.

…create super elaborate handmade gifts with stickers and glitter and bows and ribbons and almost an entire bottle of Mod Podge.

…be a million percent honest when I talk to you, so you know you can trust me.

…never say anything mean about you behind your back, or in front of it, and stand up for you if anyone else ever does.

…remember your birthday and forget to put it in my calendar and then ask you a few more times and finally write it down and then send you a happy birthday text and a gorgeous gift (see above).

…give you my undivided attention when we spend time together and look away from your eyes so I can fully process what you’re saying.

…tell other people about you, in really enthusiastic and positive ways, so that humans you have never met and may never meet will still be informed of how wonderful you are.

…remember your favorite TV shows and animals and books and colors and foods and Harry Potter characters and think of you every single time I see any item related to these.

…accept you for you, by which I mean all of you, 100% including the parts that are different or weird, because I know that weird is awesome.

…be loyal to you when life is good and when life is hard and when life is both because once we are friends you are stuck with me pretty much forever ❤

The Autist’s Guide to Staying Organized in College

Pick one system. At one point, someone told me to put things in my calendar to remember them. So I did. Then I downloaded an app to tell me to drink water (I often forget to drink water). That was good. Then Canvas sent me reminders every time I had an assignment due. I decided to buy a planner. Another person suggested a certain to-do list app. And then there was another on the app store that looked good, so I got both. And some post-its to write reminders down. And yet another app. Unsurprisingly, none of these helped me become more organized. Simpler is better.

In terms of which system you used, I don’t think there’s a one-size-fits-all solution. I use a lot of visual reminders, and then I have one place where I keep my to-do list. Then, on my to-do list, I have reminders to check email, check the websites where class announcements are posted, check syllabi, etcetera, but the key is that it’s still all on one list. I even have “look at calendar” on that one list because otherwise, I forget to look at the calendar and miss doctor’s appointments and other appointment things. So in a certain sense, you can’t escape the many systems, but you can centralize them, and that makes keeping track of life waaaaaay easier.

Geography. I’m pretty bad at navigating. Like, 20th percentile. I moved onto campus early (and I also live about two miles away from where I go to school, which definitely helped). I think this is an accommodation at other schools, so it’s worth asking about, because a) freshmen move-in day is incredibly chaotic and stressful even if you can deal with many humans and loud noises, and b) I had a solid five days to practice navigating. I biked most places, so I would just bike from my dorm to where I had my Russian class to the dining hall to the library, and then to my English class, and then back to the dorm, and so on. The first few times were hard. And so were the next 20 or so. But it would have been even more stressful to do this when classes were starting. If you’re not able to move in early, I would highly recommend using Google Maps to a) plot out your route from place to place and b) see if you can use the street view feature to get a sense of what the area will look like.

Never underestimate the power of writing things down. On your hand. In permanent marker.

Morning and evening routines. I have two lists on my wall for these. They go something like this:

MORNING

  • Take out retainer
  • Wash retainer
  • Brush teeth
  • Mouthwash
  • Shower (wash face, body; put conditioner in hair)
  • Put on clothes
  • Take meds
  • Pack backpack (food, water bottle, notebooks, phone charger essentials)

EVENING

  • Put on pajamas
  • Brush teeth
  • Floss teeth
  • Mouthwash
  • Wash face
  • Shower if did not shower in morning
  • Make sure all devices are charging
  • Take meds
  • Sleep

It helps a lot to have a physical list to look at. Essentials = keycard (for entering dorm building and swiping for meals), room key, cell phone, bike key, and med keychain. I have a list of these right next to my door so I never leave the room without them.

This brings me to KEYCHAINS. Keychains are good. Choose one that works for you. A more expensive one that last a long time might be worth the investment. The important thing is to have ONE keychain with your essential items. Also, your keychain shouldn’t break easily, or at all. And it should be hard to lose. Colorful, relatively big, etc. Bonus points if it has a cool texture and doubles as a stim toy. More bonus points if it has a carabiner and you wear jeans a lot. I often just hook my keychain with keys and whatnot to my belt loop because if said keychain is not physically attached to my body, I will lose it. Some people I know put Tiles on their keychains. I haven’t done that, but it’s not a bad idea, especially given how expensive dorm room keys are to replace ($150, at least for my dorm).

I have one keychain for my bike key, keycard, and room key, and then another one for my meds. My meds keychain is seriously the best. It looks like this:

A green keychain with a silver carabiner on one end and a metal circle on the other. The metal hook is attached to four smaller metal tube-shaped containers with caps that screw on and off. The containers are each decorated with washi tape: one is pink, the second is silver-and-white striped, the third is gold polka dots, and the fourth is a blue-and-white pattern
I love this thing.

And it is so great. I have not lost any of my meds since I started using this (talk about expensive). The design is way less conspicuous than normal pill bottles, and they don’t have your personal info on them. You can decorate them like I did with washi tape or Duct tape or probably other kinds of tapes. At this point, I’ve memorized which color equals which med, but I also carry a card in my wallet that says which is which. I was going to write the names straight on the containers, but then my therapist was like, “Yeah, maybe don’t walk around with the names of drugs that some people abuse and sell illegally around your neck?” Solid advice.

Get a lockbox for your meds when you go to college. Any meds, really, but especially if you take ones that can be abused (like benzodiazepines for anxiety, or stimulants for ADHD). And bring a decent supply of pain meds, allergy meds (if you have allergies), and definitely DayQuil, NyQuil, etc. Covid aside, everyone seemed to get sick in my dorm, and a good 8% of our group chat was just people asking other people if they had extra DayQuil or cough drops.

Weekly tasks. I allocated one day to do all my weekly tasks. Otherwise, it’s just too hard. This is what my list looked like:

  • Laundry
  • Carry clothes, sheets, detergent, and key to laundry room
  • Put clothes in washer
  • Put detergent in
  • Press start
  • Make sure both machines have started (look for water running)
  • Go back to room 
  • Clean shower caddy and soak retainer 
  • Vacuum (I hate vacuuming, but I’m also allergic to dust) 
  • Wipe down desk, window sills, and all other hard surfaces (see above about dust) 
  • Go switch laundry (remember to bring dryer sheets) 
  • Come back to room 
  • Put clean sheets on bed 
  • Wash mugs and water bottles (I soak them every week with warm, soapy water) 
  • Take out trash and recycling 
  • Go get laundry 
  • Fold laundry 
  • Put away laundry 
  • Fill up morning/night med containers (and then put bottles of meds back in lockbox)
  • This is also when I count the pills to make sure I’m not low on anything so that I can get refills before the last minute

This might seem like an excessive amount of detail, but it was really helpful for me, because this is a lot to keep track of. I should also note that it took me a good month and a half to get this routine going and to figure out how much time laundry took, how to know the machines were running, how often I should vacuum, stuff like that. I hope that this post helps other people develop college routines more quickly and painlessly, but it will still be rough in the beginning, hence my last recommendation…

Be patient with yourself. For the first two months of college, I felt incredibly disorganized and like I was constantly losing things and it was taking me an absurdly long time to figure out really basic things like how to open the blinds in my room and where a certain classroom was and how to lock my door and why the washing machine was never working, and then at some point, someone told me that transitioning to college is hard for everyone…which I guess is pretty intuitive, but I was convinced that I was just uniquely bad at life. Apparently this was not the case, and when I came back from winter break, everything was much, much easier, and I ended up taking more courses and doing all right with that because I didn’t have to expend much mental energy on all of the tasks described above. So be nice to yourself, breathe periodically (or constantly?), and don’t forget to drink water and eat food.