E Price’s essay, “I’m a ‘highly functional’ Autistic. It takes a lot of work,” at Medium, offers a rare glimpse into the day-to-day struggles of someone with a deeply invisible disability. Autism, Asperger’s and “the spectrum” are pretty close to household words these days, and most people seem to have some idea (not always a correct one) of what autism is, and what it’s like. But when someone with autism, or any other disability for that matter, takes the time and energy to spell out what their lives are like for the rest of us, that’s invaluable.
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.
Sounds pretty good, doesn’t it? You might be asking “at what cost?” If so, you’re the audience for this essay.
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 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.
Price then lays out several areas of their life which they have basically had to cordon off so the rest of it works: food, transportation, exercise, noise, hygiene and appearance, organization, and career. Clearly, these are not small pieces of a life. Here is part of what they say about food:
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 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.
There’s more in the food section, and the others are equally clear, honest, and detailed (as one might expect from a high-functioning Autistic who sets out to describe something for those of us who don’t understand).
The specifics are compelling, but Price’s underlying message is really the point. At the end of the essay, they go to some length to identify their own privileges, and then close with this:
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.
The only thing I wish Price had acknowledged is that the line between “non-disabled” and “disabled” isn’t that clear. Price has a disability that is always with them. Other disabilities come and go, sometimes over the course of years and sometimes over the course of hours. Intermittent disabilities can be extremely challenging when they are present (and having them sometimes go away is another privilege).
Price’s underlying messages about limitations, privilege, compassion, and self-care are all valid. I’m grateful to them for sharing their life and their struggle.