I’m a “highly functional” Autistic. It takes a lot of work.
On engineering a life that suits my neurotype.
On engineering a life that suits my neurotype.
I’m an Autistic person with a pretty put-together looking life. I always make rent. I have money socked away in savings and investments. I juggle several teaching jobs and do statistical and methodological consulting work. I sometimes find time to write. I have a social life. Except for the occasional noticeable chest crumbs, I present as clean and well-dressed. I manage my stress. I sleep. I eat.
I don’t think I strike the average person as disabled at all. I get work done on time. I show up to things I say I’ll show up to. I don’t show much distress in public. I rarely ask for help. Because psychological disorders are often viewed through a lens of impairment, people might call into question whether I am neuroatypical at all.
Viewing disabilities — and mental disorders — through a lens of impaired functioning is very flawed. The fact that I am functioning does not mean I’m not impaired, or that functioning is not hard. That I can survive, day by day, does not mean that I am thriving, or that my life is as easy as it is for a neurotypical person. And the aspects of my life that are impaired are rarely visible to an outside eye.
We often don’t see a person at their lowest moments — when they are crying and nonverbal, or engaging in self harm, or refusing to eat, or isolating from everyone they love. We can’t always tell if someone is struggling to make it through the work day, or if their sleep and exercise habits have been disrupted. And we don’t know, from the outside, what a person has been forced to sacrifice in order to live a seemingly “functional life”.
A lot of us “function” because we have to.
A lot of disabled or mentally ill people are able to work a job, pay rent, and get by through an elaborate system of compromise and sacrifice. We may have abandoned career paths that were too demanding of our mental energy, or lost relationships that were too socially or emotionally taxing. We may neglect exercise or beloved hobbies in order to find the time to get work done and make the money we need to survive. We may devote ourselves to rigid schedules that allow us to be professionally productive, but make other life tasks impossible. Or we may be forced to isolate more often than we’d truly like, in order to recharge from the daily efforts of getting by.
Like many neuroatypical people, I have determined a system that works for me — and it is a system that requires letting certain things go. If I want to be able to keep the income-and-getting-fed-and-getting-sleep-and-being-happy balls in the air, there are balls I have to let drop.
I love my life. It’s independent and comfortable, yet stimulating. I am my own boss, and I’m financially secure, with the free time to write, socialize, read books, and rest. This life suits my neurotype, and I’m lucky to have it. But it comes with limitations. Here are a few of them.
Food.
I don’t cook. I know the basic skills required— I can follow a recipe — but I have never found a way to incorporate regular cooking into my daily life. Making grocery lists, planning meals days in advance, and following recipes on a daily basis is extremely mentally taxing. Planning, shopping, preparing, and cooking is time-consuming and requires a lot of responsibility and forethought. I don’t want to budget for it. I’d much rather eat things that don’t take that effort.
I only have a few, precious hours of hyper-focus per day. I usually devote these hours to work — teaching classes, grading papers, sending emails, drafting reports, etc. Some days, I devote some of that focus to paying bills, or writing an essay like this. Regardless, the time is always accounted for. I can’t rework my cognitive budget, to incorporate shopping for fresh ingredients, preparing them, cooking them, and eating them — not without losing time I could spend working or getting other things done.
I am also terrible at bodily self-awareness, including knowledge of my own hunger cues. This is a really common Autistic trait. I am either utterly uninterested in food, or desperate and ravenous. This makes planning meals very difficult for me. I can’t anticipate when I’m going to need food, so I don’t know when to start preparing it. If I wait until I’m hungry to start cooking, I’m already so run-down that I can’t focus, and I end up binge-eating snacks while waiting for the thing I’m cooking to be done. It’s hard for me to even plan a dinner date with a friend — my ability to predict my own hunger is that bad.
I also have an eating disorder. I’m in recovery, but the temptation to not eat is always present. I have to make access to food as easy and immediate as possible, so I can’t thwart myself. Cooking can’t be my primary source of food.
For all these reasons, I subsist mostly on food that is very easy to quickly prepare — crackers and cheese, hummus and chips, apples and peanut butter, milk and cereal, yogurt, scrambled eggs, ramen, granola bars. This way of eating is flawed. I consume a lot of carbs. I’m always pushing myself to incorporate more veggies and protein into my quick, easy meals. And I sometimes feel a bit embarrassed at how infantile my eating habits are. But by giving myself permission to not cook, I free up a ton of mental energy, and ensure I remain fed. And that’s good enough.
Transportation.
I don’t travel well. Like many Autistic people, I have a poor sense of body position, and poor balance, and get nauseated very, very easily. This has influenced and limited my life in tons of ways.
If I don’t sit in the front seat of a car, I’ll get nauseated. I get painfully sick on the Chicago Red Line between Wilson and Sheridan every single time — the curve the train follows makes me so dizzy and sick I often have to get off and walk the remaining mile and a half home. Inside the train car, the bright lights and crowding bodies can leave me agitated and over-stimulated, giving me a headache. If a bus, train, or car accelerates too forcefully, pumps the breaks, jerks, or swerves, I will get sick.
At its worst, my motion sickness can last for hours and leave me exhausted for the rest of the day. Riding public transit multiple days in a row really eats away at me. I have to plan my weeks out to minimize my travel. Most days, I avoid public transit entirely and walk everywhere.
I have had to organize my life around my nausea. I prefer online or blended classes to on-ground ones, because then I don’t have a commute. I do a ton of freelance work because I don’t have to travel to do it. I have turned down jobs that required riding the El into the Chicago Loop, or taking a Metra train out to the suburbs. I miss shows, activist events, and social events that I genuinely want to attend, because I know that taking a train or bus will leave me too sick to actually enjoy them.
I have tried motion sickness drugs, focusing on the horizon, closing my eyes, eating before travelling, not eating before travelling, taking deep breaths, facing forward, wearing sunglasses at night, wearing nausea wrist bands, and every other conceivable strategy. It doesn’t help. My brain is not suited for travel.
Most of the time, I get along just fine using my feet as my primary mode of transportation. I feel incredibly grateful that I am able to live in a city where everything I need is a couple-miles walk away. I don’t know how I’d get by otherwise. Few disabled people have such a luxury.
Exercise.
Just as I’m bad at planning out meals, I am bad at scheduling exercise. I find putting a regular workout schedule into my calendar immensely stressful. I like to keep my options open, and I don’t like feeling obligated to complete something that isn’t profitable or necessary. I also cannot travel long distances to a gym, because of my motion sickness.
I also have physical limitations that are very common in people with Autism. I have a very slow reaction time, and poor coordination, so most team sports are out of the question. I have under-developed muscles and poor posture, also common Autistic traits, so many strength-training activities are very challenging for me. I also have trouble mirroring other people’s activities or sequencing complex physical tasks, so dance, martial arts, and some group fitness classes are not a good fit for me. My poor physical ability has also left me with a lot of discomfort in fitness spaces — I have been condescended to by gym teachers, fitness instructors, and athletic people my whole life.
I do, however, love moving my body. And I need regular physical activity to stay happy and healthy. My solution is taking long, long walks. I listen to podcasts and wander through Chicago’s many parks, side streets, and cemeteries. Walking is my primary mode of transportation — I walk to my weekly Genderqueer discussion group meetings, to the Universities where I teach, to the store, to doctor’s appointments, to shows, to parties, and everywhere else. On days where I don’t have to travel, I’ll take long walks to nowhere at all.
Walking is a very gentle and easy form of exercise, which frankly is what my limited physical abilities require. I don’t have to be strong or coordinated to do it. It doesn’t require planning, and it’s available at any time. It soothes me when I’m stressed or over-stimulated by bright lights, noise, or people. And when I pair a long walk with some relaxing, synthy music or an interesting podcast, it allows me to zone out and self-stimulate in a very helpful way.
Noise.
For a few years, my partner and I lived on a busy corner where traffic fed into the highway. Loud honking, yelling voices, and ambulances would annoy me all day and night. It left me constantly on edge. I’d yell out my window, at no one in particular, to drain off some of my frustration and rage. I’d stomp around the house, pissed off, wanting to smack myself with a hair brush to calm myself down. I’d close myself away in the closet and turn all the lights off, but it didn’t help much.
Currently, we live on a quieter side street, and I’m much more calm. I’m still easily perturbed, however, by the rumbling of our upstair neighbors’ bass or the random yelling of men in the courtyard. In public, I’m regularly over-stimulated by crying and laughing kids, loud conversations, blaring car alarms, and overly noisy jukeboxes. When I do work at coffee shops, I need over-ear headphones and soothing beats. I have trouble filtering sounds at parties and in busy spaces.
Living in a city, I crave a silence that is impossible to find. Cemeteries and late-night walks give me some solitude, but otherwise it’s hard to come by. People are packed in so close to one another, and every single one of them is making noise. The noise level, I guess, is appropriate by neurotypical standards. I often want to yell at my neighbors for playing music that I believe is too loud, only to discover my partner finds the volume absolutely normal and tolerable.
I am able to function, yet again, because I have the privilege of being able to work from home on my own terms. I select my coffee shops very carefully — only relatively peaceful ones become my go-to’s. I am very careful about keeping my headphones charged. If I have a busy social calendar, I have to schedule alone time into my week, to ensure I’ll get the silence I need. When I’m too agitated at a bar or a party, I know that I need to take breaks or leave.
Hygiene and Appearance.
My boyfriend once asked me how I managed to keep all my clothes looking so new. I told him that I almost never washed them. Washing clothing makes the fabric pill and the colors fade. But if all you do is hit your pile of clothes with a spray of Febreeze every couple of days, they’ll stay looking new for years.
That’s not why I avoid doing laundry, of course. I avoid it because I have better things to devote my energy to.
I take a very low-maintenance approach to personal grooming and hygiene. I don’t do something unless it’s necessary, or actually enjoyable. Thankfully, I’m able to pull this off. I wash my underwear and socks, after each use, and my t-shirts after about two uses, because I have to, but I rarely wash pants, sweaters, or button-up shirts. I only clean my floors when the grit and dust sticks to my feet. I throw things out when the apartment looks cluttered. I let a whole lot of other things slide.
I’ve never liked spending time on appearances, like many Autistic people. I never saw the appeal of being especially image-conscious, and I never had the mental energy or organization to engage in elaborate grooming rituals. It feels irrational and annoying, and makes me self-conscious.
I never enjoyed wearing makeup or styling my hair in complicated ways. I never, in my life, have gotten a manicure, plucked my eyebrows, had a facial, worn an up-do, or taken more than five minutes to get ready for an event.
A lot of my grooming and style habits reflect my sensory needs. Many types of clothing cause me such sensory discomfort that I can’t even consider wearing them — bras are uncomfortable, waist belts are confining, binders are so tight I can’t think or breathe, and structured garments make my head staticky and frustrated. Having long hair was frequently painful and distracting — each strand felt heavy, like it was dragging on my folicles all day long. Brushing out tangles was painful and unpleasant. When I did wear make-up, I hated how it felt on my skin.
I do care about presenting in gender-affirming ways, and I like wearing clothing that is cute and comfortable. I wear clothing in cute patterns and colors because looking at them cheers me up. I shave most of my head because I like how it looks and feels, and because I’m soothed by the feeling of the razor against my scalp — it’s a therapeutic activity, rather than a nuisance. I wear jewelry that I can fidget with.
I don’t primp, pluck, or otherwise modify my appearance much at all. I don’t have a face care regime. I don’t see a hair stylist. My morning routine takes less than two minutes — I brush my teeth, moisturize my face, throw on clothing, and go. I worry about very little else. The less time I spend looking in the mirror, the more happy I am.
If I were to work a conventional job, I might be expected to dress more professionally, in clothing that causes me sensory discomfort or that doesn’t affirm my gender. I might be expected to hide my under-eye circles and acne using cover-up. People might see me as “unprofessional” for wearing comfortable, practical shoes and stretchy fabrics. I’d be forced to choose between my own comfort and other people’s expectations, and probably end up having to sacrifice a lot of time and happiness failing to meet a meaningless ideal.
I’d much rather be a bit sloppier and a lot more comfortable in my own skin.
Organization.
A lot of neuroatypical people thrive on organizational systems. Folders, notebooks, lists, and apps like Todoist help many of us function. I find, however, that setting up an organizational system, and maintaining it, is very draining in and of itself. So I mostly stick to organizational systems that are intuitive and supremely easy.
For example, I have maintained Inbox Zero for the past six or seven years. I teach at four different universities, and have, on average, 3 or 4 active consulting clients at a time, yet I manage to end every work day with an empty inbox. I’m ridiculously proud of that fact. When I see Gmail’s encouraging, sunny inbox zero message at tend of a long day, I feel peace.
I use my inbox as my professional to-do list, and I tackle every item on it as quickly and efficiently as possible. If a student asks, via email, for a Letter of Rec, I sit down and write it, and then submit it, almost immediately. If a client or a student has a question, I address it as soon as I see it. All incoming emails are either dealt with, or deleted, in a flurry of activity at the beginning of the day.
For me, maintaining an empty inbox keeps me motivated and effective. I don’t put off work — I get it done, right away, so I don’t have to worry about it. This feels immensely rewarding, and keeps me from having to prioritize and schedule small tasks. For me, it simply makes more sense to just sit down and write a Letter of Rec immediately than it does to look at the due date, decide when I want to complete the letter by, and put “Write Letter of Rec” on a to-do list.
I am a very fast worker. I only have a few hours of hyper-focus available to me each day, but I use those hours very, very well. I grade papers as soon as they come in. I respond to client concerns within 24 hours in almost all cases. If I have a large project to complete, I schedule two or three hours of “chipping away” time every single day, until the task is done.
I always get things done before they are due. One of my personal mantras is that if something is not early, it’s late. This approach would cause a lot of people undue stress, but for me it means I don’t have to worry too much about scheduling deadlines or planning out my days. My time is accounted for, and I’m always ahead of schedule.
The only organizational tool I use, really, is Google Calendar. I use it to keep track of social events, planned phone conferences with students, vacations, birthdays, meetings, and other obligations. The calendar syncs to my phone and I receive email reminders a day or two in advance. Because I am devoted to keeping my inbox sparkling clean, I always notice these reminders and address them.
Career.
I have a PhD in social psychology and several high-tier publications, including a first-author publication in the Journal of Experimental and Social Psychology. I had a successful post-doc straight out of graduate school, and I have always received glowing teaching evaluations. Despite all this, I do not have a standard academic career. When I graduated, I applied to exactly two tenture-track jobs, and I didn’t take those applications super seriously. I knew the tenure-track job gauntlet was not suited to my neurotype.
Getting a tenure-track academic job requires applying to dozens, even hundreds of positions, engaging in multiple rounds of phone and video chat interviews, visiting campuses, giving job talks, meeting with professors and administrators, and hanging out with staff, faculty, and students over the course of a day-long trip. An applicant must seem affable and normal throughout the entire process. Once a professor gets a tenure-track job, they must remain affable, productive, and normal-seeming for several years, publishing articles and engaging in service throughout the department and then completing a lengthy and intimidating tenure application.
I am not good at any of these things. Like a lot of Autistic people, I’m not good at putting effort into something I don’t see the point of. I have trouble doing work that doesn’t give me either pleasure or money. And publishing articles, applying to jobs, doing phone interviews, and visiting campuses is neither fun nor lucrative. It’s hard to imagine applying to upwards of 100 jobs — as one colleague of mine did — and only getting 2 interviews in response. The hit rate is irrational. I can’t bear it.
I’m also very, very bad at being affable and seeming normal. Academic jobs require much more than a standard job interview — typically, the prospective hire must spend hours and hours socializing with people in the department, including multiple lunches and dinners. The prospective hire must be likable, appropriate, and professional the entire time.
I can be socially acceptable , to a point — but it’s exhausting. And it’s hard for me to be both appropriate and outgoing. Like many Autistic people, I’ve struggled with the cultural message that I’m supposed to “be myself”, when much of my natural self is seen as odd or awkward. In high-stress, high-context professional worlds, my attempts at being personable tend to fall flat. I once botched a job interview by casually mentioning, during lunch, that I had been in Special Ed Gym as a child. I could feel the hiring committee deciding I was too weird and too damaged to belong.
As a young adult, I was interested in academia because I thought it was a place where eccentric thinkers were welcome — but that is far from the case these days. For an academic to get one of a scant number of academic jobs, they must be well-dressed, gender conforming, appropriate, outgoing, neurotypical-seeming, and highly highly productive, to a self-sacrificing degree. I can’t do, or be, all of those things at once. Nor do I want to be.
I have instead embarked on a career path that is unconventional, comfortable, and freeing. My job allows me to set my own schedule, and devote myself to activities that earn me money rather than publication credits. I am able to dress how I like, and present as my genuine, genderqueer self. I can focus on the elements of academic work that fascinate me — prepping courses, discussing methodology — and ignore the tasks that are highly formalized and unrewarding (giving conference talks, networking). I don’t have to answer to anyone, or submit myself to the judgment of a tenure committee. While many of my peers do not understand my career path, and my former adviser thinks I have sabotaged my career, I am happy with my choice.
A Life this Easy is Hard to Get
I am an immensely privileged Autistic person. I was able to go to graduate school with full funding, which allowed me to develop marketable skills. While in school, I found opportunities to teach online classes and do consulting work, and developed those pursuits into a career that lets me work from home. Though I struggle with meetings and phone calls, I am able to communicate easily and quickly via text and email. I can hyper-focus on work tasks for hours at a time. I have clients who value my expertise, and pay me fairly.
I’m also a white person who was assigned female at birth, and who looks non-disabled to the untrained eye. All these factors make it much easier for me to occupy public space as an Autistic person. I can spend hours at a coffee shop without being harassed by the owners. I can walk around my neighborhood at any time of night and not be seen as “suspicious”. I can wear anything I want without being seen as predatory or perverted (a freedom trans feminine people do not have). I can engaging in soothing, self-stimulating activities (like fidgeting with jewelry or listening to music) without people staring at me. Disabled people who are not white, afab, and able-passing do not have such advantages.
I am able to afford life in a major city. I live in a small one-bedroom apartment with my boyfriend, and I am judicious in my spending, but I’m also really, really lucky. My ability to make and save money is influenced by all the privileges I do have.
Even with all the immense, unfair advantages that life has given me, life as a neuroatypical person is hard. There are many careers paths I could never successfully follow, and workplaces I could never inhabit. Frustratingly, this is not due to a lack of interest, motivation, or skill, but because I’m not good at existing in a milieu where small talk, meetings, ambient noise, and social politics are abundant.
Like many disabled people, I am alienated from certain aspects of life because my sensory, physical, social, and emotional needs are not accommodated. Unlike many disabled people, I have been able to craft a life that does accommodate those needs. I am a productive, happy, connected member of society because I have been able to tailor my life to my disability. But it has come at the expense of many things that neurotypical people take for granted.
A Note to Readers
To all the non-disabled people reading this, I hope my words make you aware of some of the unfair advantages you enjoy. If you are able to work, cook, clean, engage in hobbies, and travel to meetings, parties, and activist events, I hope you recognize how privileged that makes you. I encourage you to think about the sacrifices your “functional” disabled friends have had to make, in order to craft lives that are survivable. And I implore you to consider, respect, and empathize with the disabled people who do not have that option.
If you’re a disabled person reading this, you don’t have to do a thing. Give yourself a break. Order takeout. Cancel plans. Febreeze your clothes instead of washing them. You’re doing great. I’m proud of you.