- Diseases, Disorders & Conditions
For a New Autism Vocabulary
It’s a strange experience hearing others talk about autism spectrum. The language used to describe the experience of autism comes almost entirely from people who don’t know what it’s like to be autistic. The most obvious example is the common medical designation for autism, ASD, or Autism Spectrum Disorder. I’ve heard serious medical professionals, dedicated workshop and therapy leaders, and committed parents all use the term “disorder” to talk about something that is as intimate to my life as the air I breathe. The problem for people on the spectrum is that autism is not a disease, something we can identify apart from ourselves. It’s not like having a chronic illness, or a cancer that you can “fight”; it pervades our perceptions and actions, and there are just as many good things about it as there are problems resulting from life on the spectrum.
Autism doesn’t shorten a person’s life, or even necessarily make that life unpleasant. But the language we use in our culture to describe AS illustrates a deep bias we have about the importance of normalcy and our native dislike of things foreign. Technically, autism is a cognitive “disability.” The term “disability” isn’t strictly a negative term from a medical perspective. Rather, it’s meant to designate abilities outside what are designated the normal range of functions. The problem is that disability is an extremely relative term: almost no one fits into the normal range on every category. The majority of people in this country are overweight; most men have higher than “normal” blood pressure by the age of forty five; almost everyone will experience a disabling illness or physical injury before they die. We all live with disability, but it is a specific choice to name whole populations like the AS community as “disabled.” It’s a designation that separates us from the population at large in a negative way.
Having AS in our culture today means being named by others. There is a vocabulary out there that describes you that you never agreed to and which largely doesn’t fit. “Disorder” and “disability” automatically discount all the things that I can do that normal people can’t do as easily. I like being able to concentrate on a complicated essay on philosophy in a crowded subway; I like being aware of all the electronic devices that are on in a room when I walk in; I like being able to think logically about an emotionally fraught question; I like being orderly, tidy, and systematic in my approach to life. I think that most people would benefit from these skills which come naturally to me, and I think the world would generally be a better place without so much of the emotion that normal people value so deeply. This is all to say that I don’t think of myself as “disabled”; instead, I see myself as differently abled.
We need a new vocabulary that can start to map out the differences of AS without judgment and without normative expectations. These terms should come from within the AS community, rather from people who can only hypothesize about what it’s like to live on the spectrum. Autism is a kind of special intelligence, and like the queer community and feminism and the civil rights movement before that, we have the opportunity to reclaim what we are called and what those terms mean. For me, “disorder” and “disability” are off the table, but that means figuring out a way to describe what it means to be differently abled.
This is the beginning of a series of blogs I’m going to write about words that describe AS. Some of these words are everyday terms that have a special meaning for me; others are reclaimed terms that normative culture uses in ways that I don’t relate to; still others are terms I, or others like me have made up because we haven’t found anything that describes a particular aspect of our experience.
- Autism: Who Needs It?
What it does it mean to live in a “Neuro-Typical” world? In this post, I define NT and talk about it in relation to an autism spectrum perspective.
Probably the most important term for beginning to understand AS from the inside is “Neuro-Typical.” It can be written in any number of ways: neurotypical, neuro-typical, etc. I didn’t invent the term; it’s a part of the general discussions about cognitive “disability,” used by many people for many diverse explorations into different ways of understanding the world. I capitalize it because for me it names a philosophy of life, a pervasive attitude that takes certain standards of behavior, thought and action as the norm without necessarily considering the range of possibilities outside of these norms. It’s a way of naming an attitude that is so normalized that we often don’t think of it as an attitude at all: it’s just the way things are (and the way things ought to be). I often abbreviate the term as NT, putting it on the same footing as AS, so that it’s another way of seeing things rather than the automatically accepted norm. (For more on NT, check out my blog on the topic.)
- The Advantages of Autism, A Fable
Imagine a world in which autism was the norm...
New Language, New Thought
In the coming months, I’m going to introduce and unpack more terms: Normate, schiz, routine, pod, intelligibility, passing or masquerading, ethology and others. I’ve introduced most of these terms in my fictional story about a world dominated by an AS perspective, which you can find in the above link.
Autism as Metaphor
In Susan Sontag’s important book Illness as Metaphor, she explores the way that language about illness is loaded with cultural connotations. Sometimes these connotations are even positive, like the erotic implications of tuberculosis at the turn of the nineteenth century (think of Puccini’s opera, La Bohème, later adapted as the Broadway musical Rent). For the most part, illness is something we hide from in American culture. We put the elderly away in homes, and we vigorously treat children with learning disabilities to get them “up to speed.” But illness is unavoidably ubiquitous; it surrounds us and makes up a central part of our life whether we like it or not.
Our dislike of illness, Sontag suggests, is part of our incapacity to accept the difference that is inherent in our own bodies. Perfection and normalcy are oddly equated in the US, even though they are in many ways opposites. Having AS in a Neuro-Typical world means accepting all the things you can’t do from a very early age. We are imperfect by social standards, and that is naturally equated with some kind of mental illness that requires a small army of medical specialists, orderlies, nurses, support groups, psychologists, psychiatrists and counselors who are specially trained to deal with the problem of autism. There is a massive institutional apparatus that reminds you every day that you need lots of special help.
The curious thing about being human, though, is that we all need lots of help. We don’t think of an automobile or an elevator as a special apparatus that exposes our disability, but of course that’s just what they are. We never think of computers or books as admissions of our inability to remember all our obligations and ideas, but nonetheless we value these technologies because that’s what they allow us to do. When I was in college, I would frequently get on the bad side of my professors because I would sit in class without taking notes or opening the books they were referencing. As the teachers would get to know me, they realized that this was because I could remember everything they said and everything I read. It was a special ability outside the cultural norms that gave me a particular advantage in the rarified atmosphere of the university campus. I don’t need this ability nearly as much today, but it made getting my PhD relatively easy. What was hard for me was the social politics that go along with entering the academic world, and to this day I feel challenged by simple things like chatting in the hallway before or after I teach a class, or developing friendships with colleagues that would further my career.
Naming what I can and can’t do in my own language is the first step to identifying my needs. In the Neuro-Typical world, there are already names for all the things that people require, names that help to shape the world in a NT image. I also want names for things that can then become a reality for me and others. For example, many people on the spectrum need a fair amount of quiet, alone time without the stress and chaos of the NT world. Most of us have spaces that provide this for us, little rooms or tranquil spaces in the house that give us a respite. I call these “pods.” In an AS world, these pods would be all over the place: at home, at work; there would even be public pods that you could use in a pinch. Naming this need as an object helps me to locate these kinds of spaces when I need them. When I come to a new place or enter a new context, one of the first things I do is identify possible pods, and more than once that has kept me going when I felt overwhelmed and unhappy amidst the noise and disorder of the NT world I inhabit.
Ritual: The Underlying Logic of Our Neuro-Typical World
Ritual: The Underlying Logic of Our Neuro-Typical World
Ritual is an important part of our culture. The religious or spiritual aspects of ritual are part of this, of course, but ritual is also much more than what we do when we worship. From a certain perspective, you could say that ritual pervades every part of daily life. If you make a special gesture to ward off bad luck, or wear a special piece of jewelry, or a lucky article of clothing, then you participate in ritual. In fact, I would even argue that ritualized behavior is a dimension of any action or thought that is automatic and routinized, a set of motions that a person goes through each day simply because that’s how things are done.
Cleaning Under the Couch
A hundred years ago, the Russian writer Tolstoy described ritual in the following manner: He was cleaning his room, going through the familiar motions of moving the couch and sweeping, when he suddenly realized that he had no recollection of what he had been doing. Had he already cleaned under the couch or not? There was no way of knowing unless he checked, because his movements around the room had habituated into a routine that required no reflection at all.
Tolstoy was clearly getting at something essential about daily life that many of us have given some consideration: Day-to-day life requires some kind of routine in order to function smoothly, but at a certain point that routine seems to take over in a deadening monotony rather than simply helping us get through the day.
Now imagine that you found it very difficult to get into Tolstoy’s predicament with the cleaning. Imagine that you had to be mostly conscious of your actions most of the time, and that you even had an aversion to any kind of repeated action that you didn’t have a specific reason for committing. That’s what it’s like for me as an adult on the autism spectrum.
For me, life on the spectrum has the blessing and the curse of always being new. I have to think my way through each day, and I have very few automatic behaviors that I can rely on. This is especially challenging with all of the little social rituals that are expected in typical daily interaction. Knowing when to shake hands, look someone in the eye, say goodbye or thanks are all uncertainties for me that require concentration. This makes spending time with most people (anyone except my closest friends) very tiring, because I have to pay attention to everything in order avoid making false steps and outing myself.
The Phatic Dimension of Culture
I have found that Neuro-Typical people generally do not connect these important social rituals to the broader concept of religious and ceremonial patterns of behavior. However, if you stand outside of the repeated behaviors of social interaction -- as I often do – then you can easily recognize the ritualized hand gestures, facial expressions, and patterns of conversation that go into the automatic process of normative social intercourse. For example, when I was younger I didn’t understand that for NTs a conversation is supposed to end gradually; it wasn’t about the information that was shared so much as what linguists call the phatic element of speech, the non-informational component that conveys the sense of emotional correspondence. Because I don’t understand (or see the reason for) phatic speech, I would finish what I had to say, and rudely turn around and walk away.
This led to a number of situations that in retrospect were kind of comic: I must have seemed like some kind of alien in graduate school, abruptly coming into a room, saying something, and coming to what I thought was a reasonable conclusion to the matter at hand, and then just as abruptly leaving. But at the time, I really hurt the feelings of the people who were expecting me to go through the normalized rituals of phatic speech, in which I would say hi, ask them how they were doing, pretend to commiserate about something, and then work my way into the topic I really wanted to discuss; ending the conversation, I was supposed to say something nice, smile, and make insincere promises to hang out soon, or maybe complain about how busy I was. I wasn’t ever busy or overburdened with work, however, because I would leave all of these phatic elements out of the conversation, saving myself hours of time each day, even while I was unwittingly causing real damage to my relationships with colleagues and potential friends.
If I could go back in time and sit down with these people in order to ask them for reasons for this phatic speech, I doubt they would have responses that I could understand: phatic speech is precisely the communicative element that doesn’t need a reason. It is just what is done, and unfortunately for people on the spectrum, there are tangible punishments for not obeying these rituals. In contrast, I have always felt comfortable in a therapeutic setting, where participants are expected to be self-conscious about their communicative process. For me, this is daily life, because I can’t turn on that automatic behavior. In individual and group therapeutic contexts, I see others struggle against relinquishing this automatic attitude. There is palpable resentment toward this therapeutic scrutiny of ritualized comportment. I’m sympathetic to those struggles and frustrations: it is a mirror image of what I experience, but for me the therapy room or the group meeting is a small oasis in the midst of a world of phatic expectations.
Learning Curves and the Plateau
The phatic rituals of social interaction are just one of the aspects of this capacity for repeated, unreflective behavior in a Neuro-Typical world. The vast majority of jobs require a great deal of automated behavior. Part of the reason I completed my PhD was my deep discomfort with any job – even your average white-color profession – that requires unreflectively repeated behaviors. This may sound judgmental, but I certainly don’t mean it that way. When I describe what I mean to friends, I talk about it this way: Think of learning as an upward curve, and the point at which you stop learning as a straight line. In the US, we require most people to go through a fairly rigorous upward curve of learning and gathering new experiences when they are young, but we also measure the success of a career mainly by the flat line of repeated actions. This issue is so common in NT culture that we have names like the “Peter Principle” to describe the endemic problems that come about as a result.
Everything from our vast trucking industry to high-level corporate management faces the issue of the learning curve. The ability to cope with the shortcomings of the plateau is one of the defining traits of being “normal.” As far as I can tell, the NT person can automate enough behaviors to allow for continuous distractions, almost as though they leave their bodies to keep doing the necessary activity while they think about other things or amuse themselves with unrelated activities. For me, it’s all or nothing; I have to concentrate completely on each task, and my interest is completely absorbed in whatever I’m doing. This allows me to read a complex book in a noisy café, or follow thorny problems through to their conclusion, but it also means that I can’t multitask well, or repeat behaviors once I have climbed the learning curve to a plateau. One of the defining traits of a PhD is an expert who can endlessly new problems to him or herself; in other words, someone whose profession is described by an insistent refusal to plateau. That’s a more comfortable way for a high-functioning AS person to live, because it minimizes our exposure to this dicey world of ritual.
In my next entry, I’ll talk about what for me is the opposite of ritual: linearity.