A Tale of Two Epidemics

If you were a Martian who had just landed on Earth, somewhere in the United States, and you opened a newspaper or got on a mainstream news website, you would get the impression that two things were happening to the human race:

1. Our children were all being stricken with a mysterious and terrible disease called "autism," which eradicates the personality and prevents the child from ever having any sort of life of his or her own, and


2. Large numbers of us were suddenly blowing up like balloons, growing larger and larger with no sign of stopping, and falling prey in record numbers (and at ever-decreasing ages) to such maladies as hypertension, Type II diabetes, heart disease and atherosclerosis.

In case the sarcasm doesn't come across, I don't believe either of those things are happening. I believe humanity looks much as it always has, with a wide range of mental and physical types.
I also believe that those types are determined largely by genetics, which would make it difficult to have an "epidemic" of obesity or autism --- you might as well entertain the idea of a tallness epidemic.

"Now, wait a minute, Lindsay," I hear you saying. "You can't be telling us you don't believe the way we're living as a culture has no effect on our health! In fact, we're pretty sure we've caught you implying the opposite on multiple occasions! What's up with that?"

You're right. I do believe a person's lifestyle has an effect on their health, their body composition and where their weight falls within a genetically determined set-point range. I'm as ready as any crusading zealot to condemn our culture's habits of driving everywhere, working long hours at sedentary jobs, goofing off by sitting in front of the TV or computer instead of playing in the yard, and eating greasy, calorie-dense but nutrient-poor fast food. I'm not willing to extend this condemnation into a personal condemnation of every person whose body does not pass aesthetic muster with me, however. Doing that assumes that poor health habits inevitably lead to fatness, and that fatness is a reliable marker of poor health habits, both of which are just not true.

What does any of this have to do with autism? Well, as I've said previously, I think our culture fixates on a One Right Way to Be, whether it's physical, intellectual or spiritual. Like the ancient Greeks, we lazily equate (what we perceive as) physical beauty with health and goodness. Since the current ideal of beauty is ridiculously thin, is it any wonder people criticize themselves and their neighbors for being morbidly obese? By comparison with the ideal, we are. But because few people are willing to disregard the ideal, we end up thinking it's our bodies that are falling short. Similarly, since psychiatry has long focused on the many forms of mental dysfunction, we have come to think of mental health as the narrow strip of territory not claimed by any of the lurking horde of psychoses and neuroses.

There is also a common motif in the history of diagnosis of autism and obesity that contributes to the widespread belief that the prevalence of both conditions is rising rapidly: they both underwent a revision in the diagnostic criteria within the past decade or so that made them both much more common. With the switch to the DSM-IV, more subtypes of autism were made available (and, obviously, when there are more categories, more people find one that fits them!), and Autistic Disorder itself became a more flexible diagnosis (of sixteen suggested traits, you only had to meet six to qualify). Likewise, in the late 1980s the cutoff point for the "overweight" category of Body Mass Index moved from 27.3 (women)/27.8 (men) to 25, shunting millions of Americans into the overweight category overnight. Did those people get any fatter, or less healthy? No. Think about that the next time you hear the statistic that two-thirds of American adults are overweight or obese.

A Flash-Flood of Feminist Fiction

Within the past two weeks or so, I read both Marilyn French's The Women's Room and Charlotte Perkins Gilman's Herland (Herland I finished in a day; it's very short and an easy read). Though they are about as different as two books could be --- Herland is a utopia, told from the point of view of the male explorers who discover the titular all-female enclave, while The Women's Room is realistic and quotidian, reflecting the everyday lives of a shifting constellation of women --- I still find that they cover a lot of the same ground.

Specifically, the ground they cover is the tissue of unquestioned assumptions dividing human life into discrete, barely-overlapping male and female spheres. In Herland, of course, the women do everything because there are no men, and have not been for generations (they reproduce by parthenogenesis), while in The Women's Room the life story of Mira, its protagonist, is periodically interrupted and subjected to feminist criticism by the group of women hearing it. Mira herself also realizes the injustice of some of the things in her pre-feminist life, though she does not analyze them deeply or fight them. The Herlanders are entirely innocent of conventional notions about men and women, and ask their male guests to explain them, which they can never do to the women's satisfaction.

Here are two passages, the first from The Women's Room and the second from Herland, that illustrate the way these two books handle the same themes:

Mira and Val left. Almost everyone was gone except for the inner circle and a few young women who were cleaning up.
"I really hate that Anton," Mira said.
"Yeah. You wouldn't be too happy at his being Dictator of the World."
"I wouldn't be happy at anyone's being Dictator of the World, but I'd rather have that guy Ben, or any bumbling idealist."
"I don't agree --- quite apart from Ben. Bumbling idealists invariably get overthrown by nonbumbling fascists. What I keep wondering is why we always have to choose between obnoxious alternatives. I mean, we live in moral schizophrenia: there are certain ways to behave at home, in town, in the nation, and entirely different ways of behaving politically. I mean, if the president of General Motors got treated at home the way he treats the world, he'd collapse. It's all because of the man-woman split, I'm convinced of it. They get women to act
humane and decent so they can sleep at night even though all day they're out screwing the world. If Anton were a little humane --- he really is bright, you know --- if he were female, say . . ."
"Impossible!"
"Right! It's his socialization that makes him so impossible."
"Oh, Val, that's just too fanatic. There are women who aren't humane, and I guess somewhere there are men who are. Hypothetically, at least."
"Sure. The point is that the roles are split on the male-female model. I'll bet you if you ever meet a humane guy, ten to one he'll be gay."

"We want so much to know --- you have the whole world to tell us of, and we have only our little land! And there are two of you --- the two sexes --- to love and help one another. It must be a rich and wonderful world. Tell us --- what is the work of the world, that men do --- which we have not here?"
"Oh, everything," Terry said grandly. "The men do everything, with us." He squared his broad shoulders and lifted his chest. "We do not allow our women to work. Women are loved --- idolized --- honored --- kept in the home to care for the children."
"What is 'the home'?" asked Somel a little wistfully.
But Zava begged: "Tell me first, do no women work, really?"
"Why, yes," Terry admitted. "Some have to, of the poorer sort."
"About how many --- in your country?"
"About seven or eight million," said Jeff, as mischievous as ever.

The same thing is happening in both of these passages --- the normal, "natural" state of affairs is being called into question by female characters --- but in the first passage the characters begin by discussing specific details of their personal lives (say, the odiousness of another character, Anton) and move gradually into wider social issues (Val relating Anton's odiousness to the public-private, male-female polarities), while in the second passage the female characters are asking how a society segregated by sex can work. What The Women's Room tries to uncover by excavating the countless frustrations, compromises, grievances and injustices shaping its characters' lives is the same thing Herland tries to expose as absurd in logical terms by having its male characters who act as spokesmen for Western civilization continually fail to answer the female characters' questions. The Women's Room seems to be operating more on the principle that the personal is political --- that systemic inequalities inevitably distort relations between members of different groups (races, sexes, classes etc.), while Herland focuses more on showing, via an imaginary alternative, the extent to which femininity is an artificial state. (It is a recurring complaint from Terry, the most overtly sexist of the three male characters in Herland, that the women of Herland are "unfeminine," even though they are physically beautiful).

Another difference between the two books is the structure (or lack thereof) of the narrative: Herland is meant to be the report of the three explorers (the two who return, that is), and as such spends a lot of time describing the workings of the women's society (though, as the narrator reminds us, leaving out concrete details of its location so that it may remain undisturbed). Much is left out for the explicit reason that it deviates too far from the story's intended purpose. There's a clearly defined story arc: the first chapter describes the men's involvement in an unrelated expedition, where they hear stories of a hidden country of women, and their decision to take a side trip to look for it. When they reach Herland's borders, they are taken captive and taught the country's language and history, that they might in turn teach the Herlanders about the other countries of the world. Most of the book is spent chronicling this cultural exchange, though sometimes the focus shifts to developing relationships between the three men and the three native girls they encountered on their initial foray into Herland. It ends when Terry is expelled from Herland for violence against a woman, and the narrator and his new wife choose to go with him. A sequel, With Her in Ourland (which I have not read) details Vandyck and Ellador's adventures in the wider world.

By contrast, The Women's Room has no structure at all, and its narrator frequently tells us the formlessness is deliberate:

One thing that makes art different from life is that in art things have a shape; they have beginnings, middles, and endings. Whereas in life, things just drift along. In life, somebody has a cold, and you treat it as insignificant, and they die. Or they have a heart attack, and you are sodden with grief until they recover to live for thirty petulant years, demanding you wait on them. ... In other words, in life one almost never has an emotion appropriate to an event. Either you don't know the event is occurring, or you don't know its significance. ... [Art] allows us to fix our emotions on events at the moment they occur, it permits a union of heart and mind and tongue and tear.

The narrator of The Women's Room is female, and a member of the group of friends the novel centers around, although she never plays a role in the story. She is very concerned with portraying all the characters fairly and completely; she apologizes to us for her sketchy rendering of Mira's husband Norm, telling us she never understood him, however hard she tried. Vandyck Jennings (narrator and protagonist of Herland) is not equally anguished over his own failure to render female characters in sufficient detail; for the most part he does not even attempt the task. "Descriptions aren't any good when it comes to women, and I was never good at descriptions anyhow," he tells us.

There were two books that Herland called to mind for me: Ursula LeGuin's The Dispossessed and The Left Hand of Darkness. Both of those sprang to my mind every time Terry harped on how "unfeminine" the Herlanders were, because both of those books (one a quasi-utopia, the other a thought-experiment with a story tacked on as an afterthought) involve worlds without gender polarities as we know them. In The Dispossessed, the protagonist comes from a moon colony that had gained independence from its terrestrial mother country several decades before the main action of the story. The colony is firmly anarcho-socialist, and roles are distributed as uniformly as they can be while still respecting individual strengths and weaknesses. Women do everything that men do, and dress in sturdy, functional clothes that do not differ from men's. Children are reared collectively, and sexual association is entirely voluntary, with no equivalent of marriage. Names are randomly generated by a computer, eliminating even that basis for gender distinction. So when the protagonist travels to the planet to collaborate with some of its physicists, he is confused and appalled when he first encounters a traditionally feminine woman. He suspects her of being a prostitute.

This passage in Herland details that sort of disorientation from the other end, when a man used to exaggerated polarization of the sexes tries to interact with women who are not:

I could see, just in snatches, of course, how [Terry's] suave and masterful approach seemed to irritate [the girls]; his too-intimate glances were vaguely resented, his compliments puzzled and annoyed. Sometimes a girl would flush, not with drooped eyelids and inviting timidity, but with anger and a quick lift of the head. Girl after girl turned on her heel and left him, till he had but a small ring of questioners, and they, visibly, were the least "girlish" of the lot.

The girls of Herland find Terry's performance of masculinity annoying because they aren't used to it, and have no corresponding scripts of their own to follow. It's clear to them that he's playing a role, and it annoys them that he can't just tell them what they want to know without all the rigmarole. Indeed, the quality of Herland's women that most impresses the narrator is their absolute, unflinching forthrightness. Much of his astonishment probably comes from the fact that femininity is designed to flatter, so a man accustomed to gender roles would find a direct, outspoken woman somewhat jarring, but I think he found them more direct in their speech even than the men of his own culture. The above passage explains how that might be: even though masculinity allows for a lot more "brutal honesty" and brusqueness than femininity does (the tending of other people's feelings being women's work), there is still a lot of social kabuki involved in upholding masculinity. You have to disguise your own ignorance, incompetence, uncertainty or fear, and you have to be mindful of your own position in relation to the other men in the room, and you have to maintain the right tone in your interactions with women. Open up to them too much, and you're gay or a sissy, but shun them entirely and you're not a real man, because one measure of manhood is one's ability to impress women. Interactions between a masculine man and a feminine woman are more like an elaborate ballet dance (albeit inverted; the woman supports the man in conversation and allows him to rise up and wax eloquent on whatever subject while she keeps the conversation going) in which the complementary roles play off one another than an exchange of information. Terry tries to give his customary virtuoso performance only to find that none of his would-be pupils are willing to cooperate.

To go back to The Women's Room briefly (because this post passed epic length a few paragraphs ago; I think this next idea is going to become its own post shortly), I was reminded forcefully throughout that novel of Virginia Woolf's idea in A Room of One's Own of what a "woman's sentence" would look like. In her imaginary future author's book, she places the sentence "Chloe liked Olivia," and singles this out as indicative of women's literature coming into its own. I took this to mean that a literature in which relationships between women are primary, and in which the development of those relationships is the focus of the book, is what women's literature will be once it is no longer primarily used for spotlighting the distortions of patriarchy. While The Women's Room spends a lot of time detailing those distortions, it is primarily about friendship between women. Chloe likes Olivia in The Women's Room, but she doesn't see her all that often because Chloe's husband got a promotion and decided to move them to a different suburb, and Chloe and Olivia both have small children and only one car, and gradually Olivia fades from Chloe's life altogether, eclipsed by Chloe's husband and kids' daily stream of wants and needs. The story is about Chloe and Olivia, but Chloe's and Olivia's lives, and most of the factors determining whether they see each other, are determined still by Mr. Chloe and Mr. Olivia.

New Concept: "Context Disorders"

I don't normally bother reading articles on MSN, as most of them are pretty vapid, but this one caught my eye.

It's titled "The Upside of ADHD," and while it only spends a little while discussing those advantages (it's a very short article, and, this being MSN, most of that text is spent introducing the One Famous Guy who serves as the illustrative anecdote), the trend it describes among ADHD researchers --- thinking of ADHD more holistically, as a different cognitive style with both strengths and weaknesses, and not inherently pathological --- sounds an awful lot like neurodiversity. I hope this trend is for real, and isn't just being extrapolated from a few books that happen to come out all at once; psychotherapy would be a lot more useful if it moved away from trying to shoehorn everyone into the same mold of "normalcy" and instead tried to help people make the best use of the minds they do have.

I have to say, though, my conversations with mental-health professionals give me reason for optimism. Although the media coverage of autism continues to be deplorable, every one of the four psychologists/psychiatrists I've spoken to about this (the psychiatrist I'm seeing now, the psychologist I saw in college, and my college abnormal- and general-psych professors) has agreed enthusiastically that autism should be seen not as a disorder but as a difference. Here's hoping the public discourse catches up with what autistic people and (most) mental-health professionals already know!

Still, as awesome as that whiff of neurodiversity-promoting from MSN was, the thing I really wanted to post about was this quote from author and radio personality Thom Hartmann:

If a left-handed person has a job cutting origami with right-handed scissors, that doesn’t mean they have a disability; they have a context disorder ... Short people trying to play basketball have a context disorder.

I really like the idea of the "context disorder." The operative principle seems to be that there's nothing inherently wrong with people who have such "disorders;" they just happen to be in circumstances that do not favor their particular idiosyncratic mix of traits. As I demonstrated in my previous series of posts on "Employment Issues in Autism," autism is a context disorder in that so much of life depends on social interactions, which are both unintelligible and irrelevant to us. Similarly, a person with ADHD will find it hard to succeed in an academic system geared toward rote learning, seatwork and passive receptivity. This doesn't mean the person with autism or ADHD is stupid or pigheaded; it means they're as out of their depth as you would be if you were to find yourself whisked into a milieu dominated by a different type of mind.

Employment Issues in Autism: Executive Summary

My own frustrating experiences looking for jobs (discussed in Part I of the series) has prompted me to do an informal literature review (Parts II and III) on the topic of autistic adult employment.

I wanted to know: Are we unemployed at higher levels than the general population? If so, how bad is it? When we are employed, do we experience any special problems in the workplace? What factors contribute to our higher levels of un- and underemployment (if we have it, which I soon found we do)? Are any of these factors changing? What can employers do to make workplaces more autistic-friendly (Part IV)?

To answer those questions, I consulted the following sources: Karen Hurlbutt and Lynn Chalmers' (2004) interviews with six highly educated adults with diagnoses of Asperger syndrome about their difficulties finding jobs, their having to settle for very menial jobs well below what they're qualified to do, and their difficulty holding onto even those jobs for very long; Gena Barnhill's (2007) and Patricia Howlin's (2000) literature reviews on adult outcomes in Asperger syndrome/high-functioning autism; Leo Kanner's (1972) and Hans Asperger's adult-outcome data on the children they originally studied who led them to define "autism"; Eva Billstedt, Carina Gillberg and Christopher Gillberg's (2005) follow-up study of 120 adults who were diagnosed with autism in childhood during the 1960s, '70s and '80s; and André Venter, Catherine Lord and Eric Schopler's (1992) eight-year follow-up study of 58 "high-functioning" autistic children.

The predominant impression I got from the literature was that most autistic people were either completely unable to get work in the competitive job market (they are either unemployed or working in sheltered environments just for people with disabilities) or they tended to work strings of low-paying, menial jobs far below their skill level. They also tend not to hold onto jobs for very long, due to difficulties stemming from interactions with coworkers, and also from not being very good at the kind of fast-paced, multitasking-heavy service jobs that are often the only jobs they can get.

Several posts from Joseph at Natural Variation cast doubt on the high unemployment rates that are commonly cited for autistic adults, though; he raises the point that so many of the studies of employment outcomes among autistic adults rely on study populations derived from state disability services. This population is probably much more likely to be unemployed than the general autistic population. So that's an important caveat --- the studies I found probably overstate the degree to which most autistic adults fail to find jobs and integrate into society, but the problems they describe are still real.

Employment Issues in Autism: Recommendations

So what can an employer do to maximize the chances for success by autistic workers and job candidates? Well, if you asked that, you're in luck, because I have a list of recommendations courtesy of Hurlbutt and Chalmers's interview subjects:

• job coaching/mentoring
• write job descriptions more clearly and with more detail
• make expectations more explicit
• support personnel helping autistics find jobs need to check with them to find out whether to disclose their autism
• consider the advantages of autism when hiring
• educate co-workers about autism to minimize friction

I would also add one very important one of my own to this list: in technical jobs, especially entry-level ones, consider waiving the interview in favor of a trial workday. We have the skills, we're observant, conscientious and thorough --- we just can't convey it in words! Why not let us show you instead?

EDIT: Galling Galla has two awesome posts that go into much greater detail about this stuff. The first is a list of recommendations for employers, and the second is for friends and romantic partners. The series is called "I'm an Aspie. Here's What You Can Do to Make My Life a Bit Easier." Catchy, isn't it? Go read.

Employment Issues in Autism: Trends

There are two conflicting trends at work in the effort by autistic people to enter the workplace: the status quo (which is still ascendant) is what Mark Romoser calls malemployment --- working a job you're both bad at and overqualified for --- while the countertrend is the rising level of general awareness about autism, and a proliferation of support systems geared toward helping autistic people adapt.

I don't think that part of the trend has yet had any significant effect on autistic adults; almost all of the publicity about autism concerns children, and most of the new supports available are educational in nature. Most of the supports available to people with disabilities seeking employment are also ill-suited to the needs of people with a lot of education and technical skills who just can't handle the social aspects of a job. But I think the tide is probably close to turning on this one. My generation of autistic people has grown up with autism being fairly well-known and (in some places more than others) a lot of support programs available. We are going to college in greater numbers than autistic people ever have before. That means more of us than before will try to enter the highly-skilled work force, and since the fields we're likeliest to choose (engineering, math, science, IT) are the same ones that graduate fewer students than the market needs (or so I keep reading), it's quite likely that if we ask for accommodations, potential employers will listen. No, I don't think it will happen by itself, but I do think the times are on our side.

There's also another trend I wonder about: do autistic women have a worse time of it finding skilled employment than autistic men? I found precious little in the literature about this, which doesn't surprise me, as autistic women and autistics with demonstrably high intelligence are both relatively neglected in research. I imagine the set containing both of those qualities is practically invisible in the journals.

There was one small indication of a trend in this direction in Venter et al's 1992 study of fifty-eight "high-functioning" autistic children who were followed up into adulthood: of the fourteen who had managed to secure employment on the regular job market, all were male, and of the three who had absolutely nothing to do with their time (no job, no supported work environment, no school or other training, no organized group activities), two were female. I can't find the full text of that article, so I cannot see how many girls were in the experimental group, but based on what I see in every other study of autism, it was probably a very small number. I do not consider this to be much in the way of empirical validation of my thesis; Venter doesn't report any sex differences in the abstract, and Howlin (in whose review this study is summarized) likewise doesn't infer anything from it. Only one study I encountered was large enough to have anything to say about sex differences, and that was Billstedt, Gillberg and Gillberg's 2005 prospective follow-up study of 120 autistic children diagnosed in the 1960s, '70s or '80s. They were specifically looking for, among other things, evidence to support the hypothesis that female autistics had worse outcomes than male autistics, which they didn't find. The people in their study population had such profound difficulties (only 10% of them had IQs near normal, most had aggressive or self-injurious behaviors and 78% had outcomes dubbed "poor" or "very poor") that the authors caution against applying their results to people with "high-functioning autism" or Asperger syndrome. Skeptical as I am of a meaningful distinction (beyond the definitional ones of IQ and language ability) between low- and high-functioning autism, or between autism and Asperger syndrome, it is mostly the latter two groups who will seek employment in the science and technology fields (at least, as long as working in those fields remains dependent on having the verbal skills necessary to pass an interview. That could change).

I would like to see a study done that compares female and male autistics of similar ability and education in their quest for suitable employment, though. I have a very strong suspicion that the women would fare poorly because the professions autistics tend to enter --- those that are detail-oriented, technical, involve problem-solving and working with things more than people --- are also heavily male-dominated. I would predict autistic women would be doubly shut out by their social ineptitude and by their femaleness, which in an all-male environment is another social disadvantage.

Employment Issues in Autism: A Look at the Literature

The anecdotes I shared in my last post give the impression that unemployment and underemployment are rampant in autism, even affecting autistics at the highest educational and skill levels. But how true is that across the board? My story, and the stories of six autism-conference attendees, can hardly be taken as representative. After all, it might be that our unusually bad experiences led us to become, respectively, an autism blogger and active members of the autism community!

To give my tentative thesis the weight of a generalization, I went digging through the KU Libraries' PsycINFO database for adult-outcome studies of autistics and Aspies. I lucked out in that my first two hits were literature reviews: Gena Barnhill's 2007 "Outcomes in Adults with Asperger Syndrome" and Patricia Howlin's 2000 "Outcome in Adult Life of More Able Individuals with Autism or Asperger Syndrome." Both articles identified trends among autistic adults to be either unemployed or employed far below their expected skill level, and to have difficulty holding onto jobs. Most of the studied autistics who worked, worked in specially supported environments, rather than in the (competitive) job market. Few lived independently, with most living either with parents or in residential care. The studies that tracked variables correlating with greater success in getting and keeping a job tended to agree that higher IQ (one study narrowed that down to verbal IQ) and more extensive social-support networks were the two greatest predictors of such success.

Two Swedish studies showed higher rates than the other (American and UK) studies of independent living, which the authors of one of the studies (Engstrom et al., 2003) attribute to the greater social supports available in Sweden, where there is generous government-funded healthcare. Even in these studies, though, most of the subjects were unemployed.

Leo Kanner and Hans Asperger, the two simultaneous "discoverers" of autism, both tracked the outcomes of their former patients: Kanner found that, of 96 people, 11 were employed and one at college. Seven owned their own homes; all the others lived either with their parents or in institutions. Asperger's patients had a much wider range of outcomes; he remarked that their special interests often drove them to become experts in that field, which "eventually led to [their] social integration," most often in academia.

Barnhill and Howlin both tied the mostly-dismal job prospects (and maddening job-hunting process!) autistic people face to our elevated rates of anxiety and depression.

Barnhill:

Despite the potential to work, few persons with AS are in regular employment, and those who are employed find their employment levels disappointing and their occupational status low. Many times jobs end prematurely, often leading to low self-esteem and depression (Goode, Rutter and Howlin, 1994).

Howlin:

Although high-functioning people with autism or Asperger syndrome may succeed well as adults, such achievements rarely come easily. Few specialist support systems exist and most individuals have to rely heavily on the support of their families in finding jobs or accommodation. ... Above all, there may be constant pressure to 'fit in' with the demands of a society that fails to understand their needs or difficulties. Inability to meet these demands may lead to stress and anxiety and even psychiatric breakdown.

I will point out here that I do not entirely approve of the use of "high-functioning" and "low-functioning" to describe autistic people. I do not think those labels are terribly descriptive, as they refer just to IQ, and autistic people don't get the same kinds of results on IQ tests that NTs do. We do better on some tests than others, and vary wildly within a test (say, the Weschler), having peaks in one domain and valleys in another, when NTs taking the same test will have a constant score across domains. Also, many of us are completely nonverbal, which makes accurate intelligence testing difficult.

That aside, I think Howlin's point about autistics being effectively marooned within our families is a good one. I think it's a particular failing of American culture that we have eradicated all forms of social support except the nuclear family. Widespread mobility, suburbanization and car culture have broken up extended families and neighborhoods, and the fear of creeping communism has kept us from developing any kind of state-run social support systems!

Employment Issues in Autism: Finding and Holding a Job

I was going to do just one post on employment issues, but I found so many articles and so many different themes to explore that I should probably break it up into several posts. In these first two, I'm going to describe what the typical autistic or Aspie experiences when trying to work. This post will be anecdotal, interspersing my own story in with the stories of the six people interviewed in this 2004 article by Karen Hurlbutt and Lynne Chalmers.

Hurlbutt and Chalmers's subjects tended to be very well-educated (four of the six have college degrees, and one of those four has postgraduate degrees) and knowledgeable, but could not find employment at their own skill level. The jobs they could find they were not often able to keep for long, either.

I have a degree in political science and am trying to get a decent job with decent pay and benefits. I have cleaned cat cages, done janitorial work, office work at the VA, [been] a telemarketer, and I worked in a group home on the early morning shift.

I had to take whatever jobs I could get, whatever was offered --- usually menial jobs, like entry-level computer or fast food. I think the longest I ever held a job was 2 years ... I don't think I've worked longer than 3 months at any given place this past year.

I graduated from KU two years ago, with degrees in biochemistry and English lit. After graduating, I tried to find entry-level work in a lab somewhere in the Kansas City area. At first, I applied to an awful lot of places, and used two different job-placement companies, though I did not avail myself of any special services for people with disabilities. (At the time, I did not think I'd have to, since my grades were unusually high and I had a lot of lab classes and a good assortment of skills). In two years, I've had a grand total of four interviews. The vast majority of places won't even bother to call me. Of the four interviews, none has been successful. I consistently get good feedback about my educational background and skill level, and the one potential employer who did give me a reason for not hiring me said that they did not think I had the right kind of personality. I'm therefore convinced that interviews are my Achilles heel, which matches up with the experiences of Hurlbutt and Chalmers's subjects. They don't specifically mention interviews, but they do say it's the social, interactive aspects of jobs that tend to thwart them, and get them fired.

I have no trouble doing the work. I am always professional, correct, kind, etc. It doesn't help. They notice that I don't have the same emotions they do.

I think that jobs usually are 80% social (conversations, lunch, breaks, chit-chat) and 20% work. People with autism are the other way around!

A big problem I have with interviews (I have not yet had coworkers to interact with, so interviews are going to be the main windmill at which I tilt) is being able to answer the questions they ask me quickly. I often have to think long and hard about my answer, and some types of questions I never can answer at all. They often ask me to tell a story about a time I solved a problem or displayed initiative or something, and I always come up short. My memory isn't, as most people's is, I guess, The Continuing Story of Me so much as it is a disjointed collection of vivid snapshots, mostly of sensory impressions, like shapes and colors. I can have prodigious recall for details, but don't ask me to produce a narrative. This makes it hard, as you can probably imagine, to create any kind of "sell" for myself when I don't walk around with a self-concept stored in my head at all times. At any given moment, probably 90% of my processing power is devoted to noticing and remembering visual (and auditory) details; attempting to do something unrelated at the same time takes a lot of time and a huge effort. But because no job interviewer ever asks you to name, say, ten things in the room that tell you what time of day it is, or to dead-reckon how far it is in a straight line from where you're sitting to the door, no job interviewer ever sees how much my brain is able to do! They probably think I'm stoned, because all they see is my passive face as I'm trying to push back the tidal wave of irrelevant mental activity and answer their question.

"What's It Like to Be You?"

This blog kind of ranges all over the place in terms of topic --- it's a feminist blog one day, a book blog another day and an autism blog yet another day. Sometimes the different areas of emphasis are able to intersect, like when I focus on the portrayal of autism in literature, or on literary or folkloric tropes that characterize the media coverage of autism, or on the female experience of autism and media and professional neglect thereof. I think it's less successful when, as has happened recently, a single topic (say, feminism) starts to overshadow the others in terms of how often I post on it. So here's an attempt to steer the blog back toward a balance between its several themes.

I think one of the most important things to happen to the public discourse on autism has been the emergence of adult autistics who tell their own stories. When we come forward with our own experiences, it overrides the old conception of autism as the absence of meaningful experience. Ideas of "empty fortresses" or "children under glass" have less power when brought into competition with our own memories of the thoughts and feelings we had but failed to communicate to anyone else. Making our stories public humanizes us by replacing the old views of autism that denied our humanity.

I've been leaking small details of my personal life here and there on this blog, because that's how this stuff comes to me: in little epiphanies and fragments of memory. Today I'm not so much going to try to tell The Story of Me so much as just give a general impression of what it's like to walk around inside this skin, and to perceive with these senses. So, here goes:

Temple Grandin famously described her experiences navigating the NT social world as being like those of "an anthropologist on Mars." That rings true to me, as far as it goes, but there's another dimension that I don't think it touches. I think of myself more as being like Isaac Newton trapped in Faerie --- it captures the same sense of bewilderment and out-of-placeness as Grandin's anthropologist, but putting him in Faerie conveys better the vividness of sense-impressions that pervades my life. It's like the world is at once hyper-real and unreal, because while my heightened senses throw the immediate physical enviroment into sharp relief, I also feel like I never get past the surfaces of things. There are shapes, and colors, and sounds, but too often they come at me too fast for me to assign them any meaning. It's kind of like living in an Impressionist painting that way. Both of these analogies --- Faerie Land and Impressionist artwork --- connote great beauty as well as unreality, and that's deliberate. I don't know if Grandin meant to signify by her choice of Mars as the locale for her displaced anthropologist that her world is barren (I doubt she did, based on what she wrote in Animals in Translation), but that is one of the connotations Mars has, which is another reason her analogy isn't quite right for me. My world has always been full of life, and full of beauty, not so much inscrutable or inaccessible as much as just too plentiful for me ever to take it all in.

I don't mean to imply that I live in some kind of sensory Eden, though. There's a lot I can't tolerate --- a lot of sounds are too jarring or sharp, and for most of my life you could just forget about touching me. The slightest contact would burn my skin like acid. So I guess the concept of beauty I'm aiming for isn't so much the Hallmark, rose-garden kind of tame beauty but the wild, terrible beauty that gives you a sense of the otherworldly. (This is how I imagine Faerie to look; I think Susanna Clarke describes it well in Jonathan Strange and Mr. Norrell).

On Joss Whedon's Feminist (and Not-So-Feminist) Discourse

I am a serious Joss Whedon fan. Just about anything that man does ("Buffy", "Angel", "Firefly", Serenity, Astonishing X-Men) ends up being something I watch (or read) over and over again. His characters continually amaze me with their depth, and the unpredictable turns their development takes. So when I came across these three posts by Allecto, I read them with great interest. I decided to list all the things I could think of in all of Whedon's oeuvre that stuck out as particularly feminist or antifeminist.

So, here goes:

The Good

• 
  a plethora of strong, distinctive female characters evenly distributed along the moral spectrum (Lilah, Faith, Buffy, Willow, Cordelia, Fred, Dawn, Zoe, Inara, Nandi, Patience, River, Kaylee, Tara, Gwen, Justine, Saffron, Agent Brand...)
  
• the ending of "Buffy," when the Potential Slayers are all made into Slayers and brought together. Sisterhood is powerful!
• Buffy confronting the three old men who created the First Slayer
• the existence of female Watchers
• the Faith/Angel mentoring relationship
• Xander: supportive (male) lieutenant/best friend of (female) Hero. How often does that happen?
• the mature Kitty Pryde

The Bad

• the tendency of characters in "Buffy" and "Angel" to suffer Horrible Consequences for having sex/falling in love (Angel becoming evil, Cordelia getting impaled after discovering Willow and Xander together, Tara getting killed, Willow turning into Warren)
• in both love triangles in "Angel" --- Connor/Cordelia/Angel and Gunn/Fred/Wesley --- the female is more of a love object/catalyst for dramatic male-male feuding than an agent in her own right; woman-as-prize seems to be rearing its ugly head here
• too many female characters in comas!
• Willow using mind-controlling magic on Tara
• glorification of prostitution in "Firefly"
• Cordelia is excessively punished in Season 1 of "Angel" for having been a bitch in "Buffy." Truly evil (male) characters were allowed to find redemption with a lot less Character-Building Hard Luck than she was put through just for being mildly irritating.
• Zoe doesn't seem to have a lot of solidarity for other women, with the exception of Kaylee. She's a strong woman, but entirely male-identified.
• Mal seems to have zero respect for Inara's boundaries, and he insults her all the time. He only comes to her defense when other men impinge on his sole right to insult her (see "Shindig")!
• whose idea was it for Cordelia to be mystically impregnated with some horrible demonspawn twice in the same series? Isn't once enough?
  

The Ugly

• 
  Darla.
• Spike's attempted rape of Buffy
• Saffron and Eve --- both strike me as archetypal woman-hating images. Woman the Deceiver, who uses her wiles to charm the men she's simultaneously trying to ruin. (Props to Allecto for helping me realize this about Saffron!)
• Angel's harrassment of Lilah in Season 1. Yeah, she's evil, she works for Wolfram & Hart, but his treatment of her is extremely creepy and reminiscent of the way male stalkers and abusers treat non-evil women all the time: choking her, lying in wait for her in parking lots, "visiting" her uninvited at work...
• Wesley keeping Justine in his closet. Yuck!
  

So, given this cursory roundup, we can see that Joss has a very divided record in terms of creating truly feminist works of art. I do not believe, as Allecto does, that Joss is a misogynist --- I think he is definitely not one, and I think he does try to be feminist. He could probably stand to do quite a bit more reading of feminist literature, as he seems genuinely not to get a bunch of stuff. And, ultimately, he has done the young feminists of the world a great service by giving them this wealth of female characters, even if many of them are subjected to some seriously retrograde bullshit from both the plot and the male characters around them. I'm not just saying that because I'm a fan. It's hugely important to have a wide range of available female characters so that (ideally) every girl can point to one like herself. Boys have always had a veritable smorgasbord of heroes to choose from; I'd like to see as vast an array of heroines as well.

(Also, for whatever reason I can't bullet the first bullet point on any of these lists. The gods of Blogger really don't want me to write this post, evidently ...)