The S Word (and Why I Hate It)


by Jane Meyerding (September 2002)



"Many troubled with Asperger's are really quite bright, especially in terms of their verbal skills. ... What is harder for people to appreciate is how impaired they are in other areas."
Professor of Psychiatry (Yale University) Dr. Fred Volkmar, "Asperger's Syndrome and Why It's Hard to Diagnose," CBS News, Oct. 18, 1999.

"Rather than conceiving of autism as a deficiency, autism might be better characterised as a different cognitive style."
Is Asperger's syndrome/High-Functioning Autism necessarily a disability? (http://www.geocities.com/CapitolHill/7138/lobby/disability.htm) Simon Baron-Cohen (Departments of Experimental Psychology and Psychiatry, University of Cambridge)



Well-intentioned NTs (neurotypicals) often use the term "shy" to explain some of the oddities they observe in me. I recognize the value (as well as the limitations) of good intentions, and I have been reminded by autistics more tolerant of this term than I am that "shy" can be a useful excuse in situations where "coming out" as autistic might bring unwelcome consequences. Some autistics are shy, moreover, and I don't mean to imply that shyness is a quality of which I disapprove in any way.

And yet, I hate it when a would-be friend describes me as "shy," and several other autistic adults have told me that they feel the same. I know I am not generally a good choice as a friend. Not in person, anyway. (For the why behind this unhappy fact, see Why Are We So Unfriendly?) Cyber friendship is much easier, fortunately for me. Being so inept with friendship puts me in a lousy position from which to criticize people (NT or not) who happen to violate one of my preferences as they reach out to me with friendly intention. I am not trying, in other words, to set myself up as an arbiter of good-friendship practices. All Iím trying to do is tell you why I hate to hear anyone describe me as "shy."

The reasons for my negative reaction are both personal and "political," I think.

Personally, being told I am shy feels like I am being told: "I will accept you, I will engage in the process of trying to be friends with you, on the condition that I am allowed to continue perceiving you as a slightly modified version of myself." This applies only to people who know that I am autistic, of course, and to whom I have given an opportunity to understand some of the ways in which my individual experience of autism affects my daily life. When they nevertheless persist in applying NT-based analyses to me and my behavior, I feel like I am being standardized into non-existence. My reality is being denied/rejected.

The fact that autistics arenít all the same (far from it!), combined with the ability many of us "high-functioning" autistics have to "pass" as "normal" in some circumstances, makes autism the kind of "invisible disability" it can be easy to "excuse" as a mere personality quirk/characteristic/defect or two. Although it might be better if I could relax and let that happen (allow my autism to be "overlooked"), I find myself continually irritated by and uneasy about this casual erasure of who I am. It's rude, at the very least, despite the good intentions behind it.

Analogies are dangerous (because they rely on simplification and can never be exact), but I am going to risk trying two of them here, in an effort to clarify how I feel about being misread as "shy."

The first analogy that comes to mind is with other invisible (or almost invisible) disabilities. Many years ago, I took a series of classes with (among others) a young Deaf woman. She was not totally/"profoundly" deaf, but her hearing deficit was substantial. Even with two hearing aids and skill in lip-reading, she needed an ASL interpreter in order to participate in the classes -- which were, of course, designed for and geared towards the non-Deaf majority population. This woman tended not to "hang out" with groups of other students before classes and during breaks. And it wasn't because she was "shy." She simply didn't get anything (other than frustration) out of those social gatherings; and what's more, she would have had to put up with being seen to be getting nothing out of them, with being seen as deficient (in that setting). How do I know she wasn't shy? Because I got to know her a bit. I wasn't hanging out with groups either, of course (and not because I was shy!), which made me and the friend I tended to lean on (metaphorically speaking) available for the kind of interaction she enjoyed. Like my helper-friend, the Deaf woman in the class was a lively, gregarious person, eager to connect, the very opposite of shy.

It is easy to accept that a "normal looking" person who, you eventually notice, has a hearing deficit might seek to avoid certain situations and gravitate towards others. You might not assume she is "shy" simply because she avoids spending time surrounded by people who are not willing or able to accommodate her different communication style, especially if you could see that she had her own milieus where she participated as eagerly as any other non-shy person.

Similarly, autistics have what Simon Baron-Cohen has called "a different cognitive style." There are settings and activities that are aversive for me, and others that simply do not support my cognitive style (the way one computer operating system may not support software designed for a different system).

The second analogy that that may be pertinent here is with so-called "color blindness" on the part of "white" (Euro-American) people in the United States. It used to be considered the height of tolerance for a "white" person to declare that a person's skin color meant nothing to him/her. For example, I remember a "colorblind" Euro-American who, two decades ago, claimed that an African-American woman had been part of her friendship circle years before (which would put it back to the 1960s) and that "race never came up." The one African-American woman in the group "was just like us," so there was never any reason for any of them to "notice" this difference. I didn't believe it then and I don't believe it now.

Each society has categories of "difference" that do make a difference, and in U.S. society, "race" (ethnicity perceived by societally-created and historically ratified rules) is one such category. Every person is unique, and every person's growing up is experienced individually. But it can't be denied that one's ethnicity (as perceived by others) has a very significant effect on one's experience of life-in-the-social-world, from the family on out. When an African-American is accepted as "just like us" by well-intentioned Euro-Americans of the "color blind" school, her acceptance is based on her willingness not to disturb the majoritarian status quo of the group. She may be allowed (even encouraged) to display some characteristics that the others consider safely (or amusingly) indicative of her "other" status, but she is not allowed to bring with her into their society any unsettling reminders that "we" are not all alike in the eyes of the wider world. She must be a slightly modified version of their normality, and nothing more.

Similarly, although sometimes (especially for the "high-functioning") much more subtly, being autistic in a society geared for and based on the assumptions of the neurotypical permeates the individual's experience of life too thoroughly to leave any aspect of the self unmodified. It's not something that one "has" in childhood and "gets over." Even if I have learned to control my reaction s to sensory overloads to some extent, that doesn't mean I don't have to experience them anymore. Even if I have learned to hide (to some extent) my inability to participate normally in NT social interactions, that doesn't mean I am immune to the confusion and exhaustion those interactions impose on me. Years, decades, of work may have enabled me to "work around" many aspects of my executive dysfunction, but that doesn't mean the dys has disappeared.

I try to ask for (or to need, for that matter) as little accommodation as possible. For the most part, I suspect I get no more accommodation than NT people routinely grant to one another (e.g., allowing each other to forget things, misplace things, opt out of a social event). I don't care if most people think I'm weird or unfriendly or inept (rather than autistic). With acquaintances (who won't know I'm autistic unless they are familiar with "high-functioning" autism from some other source), a friendly cheerfulness on both sides will suffice. Most people won't care enough to wonder about any oddness they note in me. But I'd like my friends to acknowledge the fact that autism is part of who I am. Not as a reason to excuse me from living up to whatever standards their friendship entails, but simply as the expression of their willingness to know me. This won't happen often, because I simply don't have time or energy for more than a few friends at a time. But I want my friends to include my real self in the relationship, not the pretend-NT self to whom acquaintances relate, and I know I must do my best to offer the same expansiveness of perception to them.

And that brings me to the "political" reason for hating to be called shy. As someone committed to advocacy on my own behalf and as part of a community (of autistics, other "developmental disabled" people, and the disabled in general), I feel the need to create a space between "friend" and "acquaintance." My friends (who are and always will be few) will grow to know more about autism through knowing me and because their interest in me makes them interested in autism and what it's like to live autistic in NT-oriented society, just as I am interested in their identities and experiences. My acquaintances, most of them, won't know or care about autism, won't have the interest or the time required to learn. In between these groups of people -- between my friends and the regular checkers at the grocery store, for instance -- I fantasize about helping a third cohort come into existence.

What if I could figure out how to "present" autism, how to make it interesting and important enough, to warrant the attention of people who already think they know me? People where I work. Next door neighbors. My doctors and their staff. People like that.

I have been impressed by the work done by many parents of children diagnosed with autism of the "high-functioning" or Asperger's Syndrome variety. Whereas legislators and many media outlets seem to hear most from the kind of parents who focus on "curing autism" and/or "eliminating autism" (e.g., through genetic research), these other parents patiently educate their children's teachers, school administrators, doctors, dentists, neighbors, and baby-sitters about the existence, challenges, and abilities of individual autistics in particular communities.

It's always about children, though. Even the parents who are autistic themselves usually have to appear as NT as possible when they are advocating on behalf of their children, which is entirely understandable. A parent's first responsibility is for the child.

That leaves us adults to advocate for ourselves. Many of us have created web sites that provide information about autism and our experiences of it. But for the most part, only people who already have a reason to be interested in autism will make their way to those sites. We need some way to bring our advocacy out into the real world. One way we might be able to do that (I might be able to do that) is to "come out" as autistic where we are. When someone at work says, kindly, "I explained to him that you're shy," I can say, "I'm not shy, I'm autistic."

The point is not to make people feel sorry for me. I certainly don't feel sorry for myself. Nor do I want to be tiresome about it, though no doubt any amount of self advocacy will seem tiresome to somebody. For that matter, I find it tiresome when other people's ignorance about the existence of cognitive and sensory differences puts me in the position of apologizing for things that aren't my fault (e.g., not recognizing someone I am "supposed to," needing to leave a noisy room, not being able to switch focus as swiftly as expected, and so on). The point is to create the space where difference can be expressed -- can be lived -- so that, in a particular place (a workplace, a school, a neighborhood), the knowledge gradually accumulates that not everybody is the same. That everybody doesn't have to be the same. That it's okay, it's no big deal. But it is real. It does matter, the same way it matters whenever people feel they have to hide from one another the aspects of themselves (and of the lives created by the interaction of those selves and the world) that don't match the expected norm.

Perhaps the most often quoted short-hand description of what it feels like to be autistic in a mainly non-autistic world is Temple Grandin's phrase, "I feel like an anthropologist on Mars." Sometimes I want to reverse the image and say to people who think they know me: "Pretend I am a Martian. Forget what you think you know about me. Let's start over."

I wonder how often I would happen upon someone, some secret Atypical, who would rejoice at the chance to do that for me if I would do it for her.



Footnotes:

Neurotypicals -- a term autistics often use to describe the non-autistic. It is a kind of shorthand and is meant neither as a slur nor as a way to deny that not all non-autistic people are "neurotypical" in other respects.

Almost invisible-- it seems to me that almost no form of disability is really invisible to someone who is willing to see a person whole. Some disabilities, however, certainly are much more easily overlooked than others.


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