Improving Autistic Access to "Culture"

Through GRASP's e-newsletter, I got a questionnaire about "cultural institutions" (theaters, museums, art galleries etc.) and what they can do to make themselves more accessible to autistic patrons. The questionnaire was sent by GRASP ally Michelle Marigliano, to help her prepare for a panel discussion at this conference.

I thought it was such a useful discussion-starter that I'm reproducing it here, for any of my readers to answer in the comments:

1. The person answering these questions
a) is on the autism spectrum
b) is a family member or close friend of someone on the autism spectrum
c) other

2. What cultural insitutions do you visit?
a) museum
b) gallery
c) theater
d) garden
e) park
f) other

3. What is helpful before or during your visit?
a) maps
b) website information
c) audio tour
d) information in print
e) other

4. What is unhelpful during your visit?

5. What would you change about cultural institutions that would make them more inviting to attend?

6. Name some cultural institutions that you think offer a pleasant experience.

For me, the biggest issue with museums, galleries and the like is crowding. If a room is too crowded, I can't pay as much attention to the exhibit because I also have to pay attention to all the sound and movement around me, and, when I'm paranoid (which is not all the time; the need to attend to all sensory stimuli equally is constant), I also have to devote mental space to positioning myself strategically so I am farthest from any knots of people. This can be a pretty demanding activity if those knots of people are constantly moving, as they usually are in a museum or gallery.

That happened when I visited the Smithsonian Institution's National Museum of Natural History in Washington; the noise and crowds had been pretty overwhelming the whole time I was there (I made it through one exhibit and part of a second one), but when I left the huge room the first exhibit had been in for the narrow hall the second one was in, the press of people got a lot worse, and I noticed I was losing the ability to speak or think. My entire consciousness was being absorbed by noise and movement, and everything took on a really scary appearance. I stopped looking at the displays, not having the available brain space to understand them, and started keeping to corners and walls, taking temporary refuge until I was able to muster the strength to find my companion and tell him I needed to leave.

What that incident tells me is that the severity of my reaction has as much to do with the available space as it does with the absolute number of people present. I could handle the same number of people in the mammal exhibit, since that was a huge room in which they could all spread out (and in which the open spaces helped me not to feel trapped). I also tend to do fine at outdoor events, like zoos or Renaissance Faires. Movement is also a big deal; I have no trouble going to the theater, even though there are often huge crowds, because they tend to stay put and are quiet most of the time. (I stay put at intermission, though, to avoid that crush). I also go to the Heart of America Shakespeare Festival whenever I can; really, my main barrier to theatergoing is convincing my family members to take me out to plays.

One indoor event that handled the problem of crowding well was an exhibit of preserved human bodies (I can't remember if it was Body Worlds or Bodies Revealed) in Washington DC. What they did was just to pulse the flow of people through the exhibit; one or two parties started the tour at a time, so that the other people would always be a few rooms away. It worked really well, as far as my ability to enjoy the exhibit without the crowds getting to me, and it wouldn't cost anything to implement, as a staff person already has to be there to take tickets. He or she could just perform the additional duty of regulating traffic.

Those are my experiences; what about y'all?

From the "Really Bad Ideas" Vault

From this article in the Kansas City Star, I learned that the National Institute of Mental Health is considering a clinical trial of chelating agents as a potential treatment for autism. (When I searched NIMH's website, the only page I could find for such a study was from 2006. Since the newspaper article mentioned the proposed study was "on hold," and the basic plan sounds similar to that described in the article, and I could find no more recent announcement of a study like this, I suspect that the 2006 plan is being reactivated).

The NIH is also doing a parallel investigation of Na₂EDTA chelation as a potential treatment for coronary artery disease, which has been denounced in Medscape and on the blog Health Care Renewal, to which one of the authors of the Medscape article contributes. There are some differences between the coronary-artery study (titled the Trial to Assess Chelation Therapy, or TACT) and the autism study: TACT is a Phase III clinical trial, while the autism study is a Phase II, and the chelating agent in the autism study is DMSA rather than Na₂EDTA, but I think many of the problems Atwood et al found with TACT are still at work in the autism study, if not aggravated.

The main problem I see as being aggravated in the autism study is the problem of informed consent. Atwood et al claim that the TACT consent form omits crucial information on the risks of Na₂EDTA chelation therapy, and makes no distinction between CaEDTA (which the FDA has approved to treat lead poisoning) and Na₂EDTA (which the FDA has only approved for treating excessive calcium in the blood, and which is to be used with caution in patients with severe heart disease --- this latter would seem to make it an unwise choice for treating coronary artery disease, even if there were any reason to believe it worked).

Here's the FDA's own website on the two EDTAs, and the necessity of clearly distinguishing them:

There are two drugs approved by the FDA that have similar names are easily confused. To add to the confusion, both drugs are commonly referred to only as the abbreviation, "EDTA."

One drug is named "Calcium Disodium Versenate" and is also known by the chemical name of edetate calcium disodium. This drug is approved by the FDA to lower blood lead levels among patients with lead poisoning.

The other drug is marketed as "Endrate" and is also known by the chemical name of edetate disodium. This drug is approved by the FDA for use in selected patients with high blood calcium levels (hypercalcemia) as well as for use among patients with heart rhythm problems due to intoxication with the drug, digitalis.
...

The two EDTA drugs have different approved uses and significantly different effects. For example, edetate disodium is more likely to cause severe decreases in blood calcium levels. A severe decrease in blood calcium levels due to the erroneous administration of edetate disodium has resulted in death, predominantly among pediatric patients, who were to be treated for lead poisoning with edetate calcium disodium. As noted below, FDA has special concerns regarding the use of edetate disodium and is reconsidering the overall risks and benefits of the drug.

The consent form, however, did not mention any of this, referring to the reagent to be tested simply as "EDTA." The special risks of Na₂EDTA, particularly those relevant to people with compromised heart health, were not brought to the attention of potential subjects.

Older patients with heart problems are not the only category of patient to have problems with Na₂EDTA, either. These two articles give three case studies (both articles deal with the same three people) of patients (a 2-year-old girl with lead poisoning, a 5-year-old boy with autism, and a 53-year-old woman with no salient medical problems who was nevertheless being chelated by a naturopath) who died while undergoing chelation therapy. Hypocalcemia played a role in all of their deaths; the little girl suffered cardiac arrest, the woman had a fatal arrhythmia, and the boy's heart was found to be necrotic. (Calcium ions are used to regulate the pumping of the heart; if all the calcium in your blood is being bound up by chelators, it can't perform its regulatory function).

While DMSA is not as dangerous as Na₂EDTA, it is also far from harmless. According to the FDA, there's a risk of neutropenia associated with DMSA and similar compounds:

Mild to moderate neutropenia has been observed in some patients receiving [DMSA]. While a causal relationship to [DMSA] has not been definitely established, neutropenia has been reported with other drugs in the same chemical class. A complete blood count with white blood cell differential and direct platelet counts should be obtained prior to and weekly during treatment with [DMSA].

The FDA also advises that people with impaired kidney function not take DMSA. So the risks here are that it's hard on the kidneys and may make you more prone to infection. It can also leach essential minerals (particularly zinc) from the body, although this effect is moderate in DMSA compared with other chelating agents.

Back to informed consent, this time with an eye to the specifics of the autism study. These patients are a lot more vulnerable than the patients in the TACT, as they are unable to advocate for themselves. The people who do advocate for them, their parents, are often so terrified by the prospect of raising a child with autism that they might think anything would be better than having their child remain autistic. This kind of desperation hardly makes for cool, rational risk-benefit analysis, the faculty for which is a critical part of giving informed consent.

The desperation factor would have to be heightened even above the baseline for autism among the parents of this study's participants, because DMSA and other chelating agents are supposed to remove toxic heavy metals that studies keep showing just aren't there. Chelation is also a pretty radical procedure: you're flooding your body with an all-purpose atom grabber that grabs and flushes from your system all metals, good and bad. At best, you've committed yourself to a regime of supplements and monitoring, and at worst, your bones, heart and immune system will suffer. Children are probably at special risk for growth or developmental problems caused by a lack of minerals. So this is a risky procedure that we have good reason to believe has no effect on the condition it's supposed to be treating in this study.

A Few Words on Autistic Identity and Activism

Shiva at Biodiverse Resistance has a post up about his impending presentation at Autscape 2008, asking commenters for input on the proposed topic: "Autism Rights Activism and Disability Activism."

From the blog entry:

Do you think [the topic is] a valid one for discussion? Do you think that "autistic rights" is just naturally a subcategory of "disability rights", and therefore that the autistic rights movement is simply one part of a wider disability rights movement, or do you think that they are separate - and, if so, why? What about the autistic rights advocates who express the view (for example, ABFH's post here) that autism "isn't a disability"?

I think I am one of the people who don't think autism is a disability --- I typically describe it in conversation as "an alternative way of being human" or "a different cognitive phenotype." In my experience, autism is as much a boon as a bane: my hyperacute senses and inability to distance myself from them make me a great observer, and my observational skill helps make me pretty good at drawing; my need to "translate" everything I read or hear into my own, pictorial language pretty much guarantees good reading comprehension; my childhood spent almost completely insulated from other people and their opinions got me into the habit of thinking independently and amusing myself (I'm never bored); and my tendency to perseverate means I finish most of my thoughts. It might take me a few days, but I do tend to resolve thorny philosophical, ethical or semantic questions when they come up. I could probably come up with a much longer list of my personal Gifts of Autism, but I think you get the point.

The problem is, even if autism were to be accepted by everybody as Not a Disability, Just a Difference, we would still be at a noticeable disadvantage in the NT world, merely because we do differ from NTs is fairly basic ways, and the world is set up on the assumption that everyone is NT. When we are not being actively discriminated against in hiring (or wherever else) because it's just easier when everyone's the same, just navigating the NT world can be a logistical nightmare (how many of us can't drive?) and draining as all hell. If one of the aims of autism-rights activism is, as I believe it to be, improving the quality of life available to autistic people and allowing them access to as much of independent, public life as they want to pursue, then it would seem that activists should work toward redesigning public spaces to make them more accessible to autistics. That, of course, involves taking a leaf out of the broader disability movement's playbook.

To sum up, I think the quibbles over whether autism is or is not a disability are largely irrelevant. We experience barriers that NTs do not, because our society privileges NTs over non-NTs, so we need a movement (or constellation of movements) to overcome them and even things out.

Barack Obama Sez Mental Health Isn't Health

Feministe, Pandagon and Shakesville have already reported on this, so I will restrict my comments on it to pointing out the somewhat retrograde attitude Sen. Obama seems to have towards mental illness:

Now, I don’t think that “mental distress” qualifies as the health of the mother. I think it has to be a serious physical issue that arises in pregnancy, where there are real, significant problems to the mother carrying that child to term.

Jill at Feministe already pointed out how problematic it is for any male politician to start talking about what he thinks is a justifiable abortion, but I am struck by the fact that he waves aside all potential mental-health problems as trivial.

Depressed? Suicidal? Hallucinating? Just suck it up and deal with it, ya big whiner.

Seriously, one of the biggest things to come out of psychology in the past few decades is the extent to which mental problems are physical problems, with corresponding changes in the brain's physiology. For Obama to dismiss psychiatric symptoms as all in the mind is about as scientifically literate as saying human activities have no effect on climate.

I expect more from the Democratic Party, for Pete's sake.

The Kansas City Star Letters Page: Your Source for Misogyny, Misandry and Victim-Blaming

This past week the Star hit a twofer on the sexism front: first, they published this article by Kathleen Parker insisting that women are equally culpable for domestic violence and then, the next day, they ran this letter from a guy in Liberty, MO that's so densely packed with casual woman-hating I may have to go through it line by line.

The most important thing that I ever learned about relationships is that, given a problem, a man wants to do something about it and a woman wants to talk about it. If I had known this fact of life years ago, I probably would not be divorced.

Much violence could be avoided if women would follow the teachings of Dr. Laura Schlessinger in her book The Proper Care and Feeding of Husbands. It shows women how they can have much more control over their lives and happiness.

Men are simple creatures who don’t understand the complex female, but respond well to a beer and some affection.

The thing I find most noteworthy here is that our letter writer (when talking about domestic violence, which, while there are male victims and female perpetrators, is overwhelmingly male-on-female) sees fit only to provide advice to women. Not "Hey, men, don't hit your wives or girlfriends," but "Hey, women, try not to annoy your husbands, or they might hit you."

There are several layers of "ick" at work in that sentiment, the foremost being that male violence is accepted as a fact of life (and, by extension, men's right to hit women is unquestioned). The second is that women are made the keepers of men's emotions: men don't have enough self-control to stop themselves from hitting women when they are angry, so it's up to women to police their own behavior so as not to make men angry. The third follows somewhat from the first two: women are assigned all the blame for the violent relationships from which they suffer, because they failed in their attempt to render every aspect of their behavior inoffensive to their husbands, who of course could not be expected to control their anger.

A Brief Experiment in Communal Living

As you can probably imagine, I was a little worried about whether I'd be able to adapt to life at The Farm's Ecovillage Training Center. Classes were all day long, from 6:30 AM to 6 PM, meals were shared, and we all lived together in the Eco-Hostel, sleeping in dorm-style rooms with a bunch of bunk beds and sharing one or two bathrooms. From what I've experienced previously, in high school and college, just the human contact I had from going to classes was enough to tire me out. I could not imagine being constantly around people for ten days straight.

With this kind of background, I was accordingly skeptical of my ability to stay sane in a communal setting. It turns out I needn't have worried; oddly enough, I was probably the most at peace that I'd ever been while I was at The Farm. I never experienced sensory overload, even though we were constantly doing things, and often outside, and even though I retained my hypersensitivity to visual and auditory stimuli and my inability to tune anything out. I also did not find interacting with any of the people there to be a draining experience; normally, I have to withdraw from company periodically to regain the energy I lose just being around other people. I did not have to do that there. I also did not experience paranoia or panic attacks, both of which I've been having for about five years now whenever I enter a crowded space. Finally, I did not have depressive episodes while I was there, which may not be significant given the short duration of my stay and the cyclical nature of my depression, but I arrived deep into an unusually severe "down" phase. So either the depression suddenly lifted of its own accord and did not return (not out of the question since episodes often begin out of the blue), or whatever environmental factors negated my sensory and anxiety issues also alleviated the depression.

I don't yet know why I felt so much better overall there than I ever had anywhere else, although I have a couple hypotheses. About the sensory stuff, the rural environment may be enough to explain it. Obviously, while there's as much stuff to perceive in a rural or wild environment as there is on a busy city street or in a crowded room, the stimuli are of different types and aren't as densely packed together. You don't get a huge, oppressive wave of sights and sounds breaking over you all at once, like you do entering a crowded room; you get a steady ebb and flow. The other stuff might well have lessened just because the sensory environment was more tolerable; a lot of times I find if I am at or near overload, the slightest stressor can cause me to melt down, just because I have no energy left to deal with it. I also might have fared better with the social interactions there than elsewhere because they were unusually direct: as total strangers sharing an immersive experience, we confided in each other without any of the usual preliminaries, which tend to trip me up.

I took advantage of my unusually sociable mood to answer everyone's questions about my life with autism and autism in general; it turns out there were quite a few people there who knew someone with it. There was an older man in my class who had a nephew with Asperger syndrome, who was brilliant in physics but had underperformed at his old private school because he tested poorly (mostly due to poor fine-motor skills*; he could not get the thoughts out of his head and onto paper in time). This man was accordingly very interested in how I thought and how I perceived the world, about which I told him as much as I was able to get out. There was also a man who had taught autistic children in a special-ed class, and a woman who did not mention any specific experience with autism, but who is a retired schoolteacher and also expressed a lot of interest in how I thought and how I differed from most people. (She asked me once, "Can you lie?" to which I responded after much thought, "I probably can, but it would be really hard.")

One exercise we did as a class that I found instructive was the consensus circle. I have always been a lot more successful at one-on-one interactions than any kind of group discussion (except for class discussions, where you can raise your hand). I cannot judge conversational timing, or tell the difference between a pause and the end of someone's turn to speak, and I turn my thoughts into words so slowly that I'm usually running several jumps behind the conversation in terms of what I'm ready to express. Not surprisingly, group conversations almost always leave me behind. I expected this to happen during the consensus circle, so I proposed that we discuss that: how can people with poor communication skills gain access to full participation in a group discussion? We never got around to addressing that question explicitly, but there are several methods the consensus circle uses that help lower the barriers to participation.

They include:

• explicit, agreed-upon nonverbal signals, such as "twinkling" your agreement (spreading your hands and wiggling the fingers) or steepling your fingers if you want to speak next
• use of a "talking stick" or other formal way of recognizing who is speaking
• having officers, the Facilitator and Vibes Watcher, whose duty it is to keep the discussion on track, make sure no one person dominates, make sure everyone has a say who wants one, and monitor the emotional undercurrents of the discussion and defuse any overly intense situation

Again, the dynamic at this particular session was so laid-back and welcoming that I was able to participate in group discussions without all that rigmarole, but those are ideas I could use elsewhere, if I think I am being shut out. In particular, the rule that explicit signals be used looks like a good one, and a great equalizer for autistics, who lack the body-language-reading ability that NTs take for granted.

*There is one theory, advanced by Morton Ann Gernsbacher, that the deficits in communication observed in autism are not deficits of social attachment, attention or "theory of mind," but rather arise from "executive" problems --- i.e., trouble verbalizing or acting on thoughts. The paper I link to establishes a correlation between autistic toddlers' motor skills and later speech fluency, which would support the hypothesis she put forth in a lecture at KU, that this lack of executive control explains the communication difficulties that characterize autism.

Addendum

There were a few things to come out of my experiences at The Farm that are germane to the purposes of this blog, but before I get to that I'd like to explain a few things about how my autism affects my ability to travel.

I hate traveling. About the only means of transportation that doesn't do terrible things to me physically is walking, which I can do fine in pedestrian-friendly Lawrence, KS but which is impracticable in suburban Kansas City, where many huge, busy intersections don't even have crosswalks. I have never learned to drive, due to a combination of really awful motion sickness making it unpleasant to practice driving and my slow reflexes and inability to multitask* making me a slow learner. Eventually, my ability to tolerate the constant nausea would give out before I got good enough to take the driving test, and my learner's permit would just lapse. (This happened three times).

I had never flown before 2007, when I flew out to Washington DC for ten days to visit my boyfriend. Since then I've done it once more, to get home from The Farm, and am of the opinion that, even though flying is a lot easier on me physically than driving, the mental and emotional strain of navigating airports is about all I can handle --- if something goes wrong, I'm helpless. I am so panic-stricken just from being in the danged airport that the only thought, the only possible course of action I can entertain is to leave immediately. When going home from Washington last year, I was routed through Atlanta, where I missed my actual going-home flight due to a delay. I was already so overloaded that I could not handle standing in line for a new boarding pass; I only wanted to curl up and shiver somewhere. I was able to tell a flight attendant what was happening, and get her to go get a boarding pass for me, and have a guy escort me to my gate. But if she had been less understanding, well, I might still be in the Atlanta airport right now.

(Because of this, I believe the TSA's policy of monitoring the behavior and body language of air travelers is going to net them a whole slew of autistic --- and otherwise invisibly disabled --- "terrorists". Seriously, some of the things they look for --- signs of stress, walking too fast, not making eye contact --- are things I exhibit every time I go out in public.)

Apart from a radical redesign of airports** such that human traffic is directed along lots of smaller corridors to minimize crowding, and getting rid of the cacophany of audible announcements in favor of issuing everybody headsets or a tiny monitor that keeps them posted with information relevant to their flight, I can't think of a lot of recommendations for how to make air travel more autistic-friendly. One quick and easy fix would be more precise training for security personnel about what kind of person (besides a terrorist) is likely to show the cues they're looking for. A few quick questions when they find a potential suspect would then sort out whether the person belongs to one of those categories.

Sadly, since the airlines appear to be hemorrhaging money this year, and high fuel prices are probably here to stay, I think we can rule out any measures that would require any significant investment in improving airports.

*The motion sickness is not related to my being autistic; that, as near as I can tell, comes from my having a series of really bad ear infections in toddlerhood that messed up my inner-ear apparatus, giving me poor balance, tinnitus, high-frequency hearing loss, and the motion sickness and dizziness. The processing difficulties (slower reaction times, lack of multitasking), however, do come from autism.

**The Kansas City airport actually has a decent layout for crowd-minimizing. They have three separate terminals, with security checkpoints at each one, so you only have to deal with a third as many people as would be in an airport of its size. It's not perfect --- that's still more people than I feel comfortable around, and it's still pretty loud --- but it's a step in the right direction.

Blog Hiatus

You've probably noticed I haven't been blogging on here lately. I probably won't start up again anytime soon, either: I am taking the two-part permaculture course at The Farm in Summertown, TN. That's been taking up so much of my time and mental energy that I hardly have enough left over to blog.

I should be back by August.

Article in the Guardian about Women with Autism

A British newspaper, the Guardian, ran an article today that echoes much of what I've been saying on this blog. It's about women and autism, and despite being filed in the "Life & Style" section (where apparently all news about women lives), it's quite insightful and well-researched. I'll post some choice quotes here, but I also definitely recommend going over there and reading the whole thing.

The highlight of the article, for me, was this lengthy quote from a middle-aged woman, Selina Postgate, who has just recently been diagnosed with Asperger syndrome, about how she thinks her life would have been different if she had been an autistic man:

At school I was bright, but eccentric. If I had been a boy, that would have been tolerated more. I'd have gone into science, I'm sure - I might have gone on to be a nuclear physicist. I'd have met some girl who would have become my supportive wife and she would have made up for my social shortcomings, in the eyes of the world, and I'd have been the rather odd but brilliant professor who couldn't really handle social occasions but who was always well looked-after by his lovely wife, and who did so many wonderful things at work that none of it mattered anyway. Instead of that, though, I have achieved practically nothing. Relationships, like jobs, have gone out of the window - I've not had the self-awareness to hold down either. Being an autistic woman has been pivotal to everything that's happened to me. If I'd been an autistic man, my story could have been very different.

In our culture, social and emotional work is women's work. All women are expected to do it --- to swoop into the conversation like graceful Valkyries and rescue (male) people who are in danger of embarrassing themselves, to soothe wounded egos, to pay adoring attention whenever someone (again, male) wishes to pontificate, to put aside their own worries, needs, fears and doubts to minister to everyone else's. Women are social gluons; their activity allows interactions between men to proceed smoothly.

Men, of course, are unaware that this work is even being done. That is also part of the job --- do your part so well that you make yourself invisible. (Autistic women are also unaware; we might know in theory that this happens, but we sure couldn't point it out if it were happening in front of us. This lack of awareness does not simply make us functionally men, however. Everyone else still expects us to act the part of a woman, and when we do not, it seems harsh and unnatural to them).

Here's the article's author, Joanna Moorhead, stating concretely what Ms. Postgate implies in her suspicion that her autism would have been less of a hindrance had she been male:

This means that women with autism often struggle at work because they lack what is often taken for granted in women - the intuitive ability to understand where people are coming from and how to manage situations. Because of subtle sex differences, we tend to "expect" more of women in the workplace in terms of smoothing things over, of saying the right thing; and whereas we would excuse a man who lacked these abilities, we are subliminally a lot less forgiving of a woman who has similar shortcomings.

I did not cover this in my series on employment issues in autism --- the only sex difference I had expected to find was discrimination against women for being women, which is particularly rampant in the technical professions autistics tend to choose. GallingGalla's comment on my second post in that series does point to this, as do the six interviews I quoted from in my first post: when autistic people do get hired, they tend not to last because it becomes clear that they don't fit in, or interpersonal conflicts arise which they are not equipped to negotiate. I hadn't thought of this in gendered terms, assuming it would affect male and female autistics equally, but now I see that given the disproportionate share of the burden women normally carry in social interactions, an autistic woman would have more problems navigating relationships with her coworkers than an autistic man of identical abilities.

There are two potential solutions I see: educating employers and coworkers about autism (ideally, the employer would provide training for the coworkers; not everyone wants to be the Walking Psychology Textbook, and doing that should not be required of them), and becoming a more truly gender-equal society. Gender equality, in actual material terms, will probably have to involve socialism, since the disproportionate burden on women to do unpaid work in the home and in relationships grows out of the alignment of male and female with the public and private spheres of activity. While that split is very old, much older than industrial capitalism, it was in industrial capitalist society in the Victorian Age that it was most heavily romanticized. In that time and since, Catharine MacKinnon argues in Toward a Feminist Theory of the State, it is women's unpaid work within the home that has allowed men to labor outside it for so much of their lives. Capitalists exploit men (and, now, women as well) by buying their time and labor from them at less than its true value, and men exploit women by "paying" them in room and board (or, in the case of a dual-income family, half of room and board) for housework, childcare, emotional support, managing the family's schedules and social life, maintaining extended family ties, and whatever other duties women perform for men free of charge. In both cases, the difference in value between the services rendered and the compensation awarded for them allows the party doing the exploiting to carry on. A company that paid its workers exactly what they were worth would go bankrupt, and a man who tried to work long hours at a demanding job without a wife or other companion to take care of him would not be very happy or healthy. He probably would not do as well professionally as his competitors who were married.

So, to lift the burden somewhat off of women's shoulders, governments and employers would have to offer public services roughly equivalent to what women currently do in private, and for free. That's where the socialism comes in. It is my hypothesis (but nothing more than a hypothesis) that if these supports were made available, the taboo that currently parcels out separate sets of social duties to the sexes would erode.

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 ...)