Tag Archives: autism

“High Functioning” Doesn’t Mean All Your Problems Are Solved

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Debbie says:

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.

Who Is at Risk? Neurodiversity and Free Speech

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Laurie and Debbie say:

Geoffrey Miller, writing at Quillette, offers “The Neurodiversity Case for Free Speech,” which is perhaps better characterized as the Oversimplified Neurodiversity Case for Protecting White Men.

Neurodiversity is an extremely important issue. Miller is writing primarily about universities, places where conditions such as autism, ADHD, bipolar disorder, schizophrenia syndrome disorders and other conditions mentioned by Miller are insufficiently addressed.

Neurodiversity is a major issue, and very under-examined and under-respected. Universities, like most other institutions, have extraordinary work to improve conditions in classrooms, in grading structures, in application and acceptance processes, in graduation standards, and many other places.

Miller, however, is focused on none of these things. He doesn’t want universities to be a place where people he is calling neurodiverse learn better, or are more welcome, or have accommodations made for their specific needs. He only wants his group of neurodiverse people to have what he blithely calls “free speech,” which means the right to insult anyone at any time and get a pass because they are neurodiverse. Real free speech also considers who is being silenced, not just who is allowed to say everything they want to say. It’s no accident that nowhere in Miller’s long article does he even consider the possibility that a person could be neurodiverse and dark-skinned, or neurodiverse and physically disabled. In his list of important and famous people whom he chooses to label as neurodiverse, he mentions four women out of about thirty people (two of them long dead), and no people of color.

Once he tips the scales so that neurodiversity is a problem that belongs to people who are all white and mostly male, he then skews things further by claiming that campus speech codes cause harm, while never acknowledging for an instant that they also prevent harm. He offers a long list of conditions that might make people insensitive, rude, or even hostile, while never acknowledging that the very same conditions can make other people timid, fearful, and easily hurt. If one person’s difficulty in avoiding insensitive speech tramples on that person’s freedom, why doesn’t another person’s strong reaction to hearing insensitive speech also deserve concern?

Our friend Guy Thomas, long-time disabled activist, says “Some people need service dogs; some people are allergic to dogs.” So you can’t make a space where everyone is comfortable and safe all the time. Instead, the intention behind the creation of formal speech codes is the search for compromises, middle grounds, ways to encourage discourse among all of us with our gloriously diverse styles, abilities, and limitations: yes, campus speech codes may make some people with some brain styles uncomfortable, while they are also making others comfortable for the first time in their lives.

Of course, white men are the people who are most accustomed to comfort, to having things their way, to having the world made for them. Miller makes the dubious claim that “formal speech codes at American universities were also written by and for the [allegedly] ‘neurotypical,'” especially dubious because he continually claims that universities attract neurodiverse people in high numbers.

What’s wrong with this formulation?  Formal speech codes were written by a newly diverse university leadership, with more women, more people of color, probably more neurodiverse people, and more people from other marginalized groups than universities have historically seen. Thus, they are among the first such codes written with attention to other factors than the comfort and safety of white men. Also, universities do not attract neurodiverse people in higher numbers than anywhere else; neurodiverse people are everywhere, doing everything. Universities, rather, have in the fairly recent past been a place where eccentric white men, neurodiverse or not, could get more of a pass than they could in other places.

We can get much more specific.

  • Isaac Newton, to whom Miller devotes his first few paragraphs, was known to be rude and condescending, but his ideas which Miller describes as “eccentric” were not uncommon for his time and place. He hid and obscured those ideas because otherwise he would have been burned as a heretic; universities at that time were not sanctuaries for eccentric ideas.
  • Post-traumatic stress disorder is something that happens to people as they live their lives, and does not fit well under the label of neurodiversity, unless (as Miller does) you just want a laundry list of reasons people might not be good at obeying formal speech codes.
  • Miller says:

“Censorship kills creativity, truth, and progress in obvious ways. Without the free exchange of ideas, people can’t share risky new ideas (creativity), test them against other people’s logic and facts (truth), or compile them into civilizational advances (progress). But censorship also kills rational culture in a less obvious way: it silences the eccentric.”

In Newton’s day they didn’t silence you, they killed you. Perhaps more to the point, believing that you will be called names, patronized, and/or attacked every time you open your mouth also  “kills rational culture.”

The article is bursting with similar errors, poking out through Miller’s more generalized inaccuracies and indefensible claims.

He left one out, though. He doesn’t talk at all about ISWMS: Insecure White Male Syndrome, a condition which formal speech codes at universities and elsewhere does threaten. Too bad.

Thanks to Lizzy Lynn for pointing out the article, and to Rich Dutcher for advice and input while we were writing.