Thursday, August 28, 2008

Metaphor at the Expense of Characterization: Autism in Margaret Atwood's "Oryx and Crake"

Full disclosure: I love Margaret Atwood's books. I have ten or eleven of them (of which two are being loaned out to a friend in Tennessee), which may give me a slightly different perspective for this review, as Atwood is the only author I've reviewed so far with whose body of work I am extensively familiar. I'll try to stick to just Oryx and Crake, but I'm not completely ruling out comparisons from elsewhere in the Atwood canon, either.

Like Atwood's other dystopia, Oryx and Crake creates a bizarre near-future society by extrapolating certain trends in contemporary society. While The Handmaid's Tale focused on the backlash against feminism and the growing influence of Dominionist Christianity over US politics, Oryx and Crake explores the catastrophic potential of runaway biotechnology, social fragmentation and class stratification. The world in which her protagonist, Jimmy, and his friend Glenn (who later names himself "Crake") grow up is a starkly divided one in which wealthy technocrats and their families live and work in bubble-like gated communities (called Compounds) run by their employers and everyone else lives in the urban no-man's land Jimmy and Crake know only from rumor ("the pleeblands"). Government seems to have withered away entirely, with corporations running the Compounds as their own miniature fiefdoms.

Against this background, Crake emerges as a star inventor/researcher within his Compound, entrusted with projects of progressively greater importance and secrecy. Always a detached, cynical character, Crake is not shocked when he discovers that the pharmaceutical company that employs him also produces genetically-engineered diseases (to which it then markets the cure). If anything, he is impressed with the elegance of their solution to the problem of avoiding obsolescence. This marks a turning point in the Crake-Jimmy relationship, as it begins to dawn on Jimmy how little he really knows Crake, and as Crake, inspired and emboldened by his discoveries about the extent of his company's research, begins to concoct an apocalyptic plan to kill off most of humanity with an artificial plague and start over with a fast-growing humanoid species designed to his specifications.

About midway through the book, Jimmy visits Crake at the latter's elite technical university. This episode, besides being the one place in the book where Crake is identified as autistic, also serves to place Crake in context. At "Asperger's U," Crake is not unique; he's only the brightest specimen of a type.
Watson-Crick was known to the students there as Asperger's U. because of the high percentage of brilliant weirdos that strolled and hopped and lurched through its corridors. Demi-autistic, genetically speaking, single-track tunnel-vision minds, a marked degree of social ineptitude --- these were not your sharp dressers --- and luckily for everyone there, a high tolerance for mildly deviant public behavior.
"Compared to this place, HelthWyzer [the Compound where Jimmy and Crake grew up; also the name of its parent company] was a pleebland," Crake replied. "It was wall-to-wall NTs."
"Minus the genius gene."

There are several things worth pointing out about the portrayal of autism and Asperger syndrome in that passage, but first I'd like to look at a similar scenario in another book. In Elizabeth Moon's The Speed of Dark, the protagonist is part of a small group of autistic coders employed in a supportive environment by an IT company in exchange for their unique gift for pattern recognition. With the advances in gene therapy that have taken place in Moon's not-too-distant future, these autistic adults represent the last of their kind. Before their autism could simply be cured, they had been assimilated into society by means of a mixture of workplace accommodations and intensive skills training. In Moon's world, these autistic coders are somewhat embattled within their company: their role is not widely understood, and managers looking to cut costs eye their supportive work environment with suspicion.

By contrast, in Atwood's near-future technocracy, autism is almost a status symbol. The leading university is named for the variant of autism its students all possess, and those students' obsessive singlemindedness and lack of the normal human need for social interaction or R&R makes them immensely valuable to the biotech corporations queuing up to hire them fresh out of college. Just typing that really brings home to me how profoundly unrealistic a scenario it is, not only in terms of the kind of worker employers tend to value, but also in its crude understanding of autism itself. Atwood seems to conceive of us as emotionless automata, uninterested in anything except solving puzzles and designing widgets.

I believe Atwood concocted this version of "autism" to stand as a personification of everything she is trying to criticize about biotechnology, agribusiness and consumer culture. The "tunnel vision" she locates in the unusual wiring of her elite bioengineering students' brains is endemic to our profit-driven society. I also see in her writing here a devoted fan of the liberal arts railing against the ascendancy of the job-training model of university education, with Crake obviously representing the kind of person such an education is meant to produce. (He's one of what C.S. Lewis called the "men without chests" in his The Abolition of Man --- people whose intellects have been educated far beyond their moral development. There is a long literary tradition of bemoaning this type of pedagogical asymmetry).

I think, for those reasons, that Crake is better read as an allegorical figure than a flesh-and-blood character. His portrayal in the story lends itself to that interpretation, too: though we meet Crake as a child, he does not change or mature at all over the course of the story, and his parents seem to have been written into the narrative as an afterthought, and then promptly dispensed with. Crake's role in his relationship with Jimmy is also decidedly one-dimensional: Crake is the critic, always making fun of Jimmy's stupidity and exhorting him to "use [his] neurons," and dismissing or belittling any effort of Jimmy's to argue with him on anything but purely practical terms. Crake's death is also fitting for a character who is little more than a dramatic device: once Crake has loosed his apocalyptic plague upon the world, he promptly commits suicide. He's fulfilled his purpose in the story, now he can go away and stop bothering Margaret Atwood and her editor.

Indeed, as a purely allegorical creation, Crake would not require any flimsy psychiatric diagnosis to explain his inhuman nature. He would already be inhuman, no slandering of large groups of people required.

A postscript: this is a fairly dramatic reassessment of Crake. The first time I read the book, I liked him and identified with him, seeing both myself and my boyfriend in him. (Crake demonstrated my rationality and intellectualism, my boyfriend's misanthropy and our shared tendency to ask a lot of "why" questions about human misery and try to come up with inventive, radical solutions).

And Now, A Frivolous Literary Post

I've always considered it a huge help when getting to know a person to read the books that are important to them, and to try to unearth traces of their philosophy, ethics, personality or mode of expression in the characters. Maybe it's the English major in me, but I've always had the greatest success understanding people by analogy with fictional characters.

I don't know if any of you are like that, but here (in no particular order) is a list of characters with whom I identify deeply:

Alia Atreides, Dune
Laertes, "Hamlet"
Stephen Dedalus, A Portrait of the Artist as a Young Man
Atalanta, Greek mythology
Tullus Aufidius, "Coriolanus"
Sansfoy, Book I of The Faerie Queene
Britomart, Books III and V of The Faerie Queene
Tybalt, "Romeo and Juliet"
Mr. Lawrence, The Tenant of Wildfell Hall
Brienne of Tarth, A Song of Ice and Fire
Therem Harth rem ir Estraven, The Left Hand of Darkness
Cassius, "Julius Caesar"
Rogue, "X-men" comics
Valentine Michael Smith, Stranger in a Strange Land
Storm, "X-Men" comics
Tyrion Lannister, A Song of Ice and Fire
Nightcrawler, "X-Men" comics
Two, Delia Daella and Raquel, Tales of MU

None of these characters is explicitly autistic. Many of them have something going on that approximates an aspect of my experience of autism (say, Rogue's inability to be touched, Alia's unique mental abilities, Atalanta's feralness, Stephen Dedalus's powerful imagination, fierce creativity and intellectual isolation, Two's literalness), but obviously the analogy is always going to be imperfect.

I have only encountered four autistic characters in novels: Lou Arrendale in The Speed of Dark, Crake in Oryx and Crake, Blackwolf in Soon I Will Be Invincible and Christopher Boone in The Curious Incident of the Dog in the Night-Time. Of those, Blackwolf and Crake both struck me as ciphers. They weren't autistic characters so much as they were opportunities for their authors to use autism for their own metaphorical purposes.

On Language

ABFH at Whose Planet Is It Anyway? has two thought-provoking posts up about the language autistic people use to describe their experiences. She is adamantly opposed to using shorthand words like "meltdown" and "shutdown" to describe our reactions to overloading or stressful situations; she feels that these words overdramatize and pathologize our emotional outbursts, which do not differ fundamentally from everyone else's. Feeling stressed, and occasionally reacting badly to stress, is not an autistic-only phenomenon, and ABFH feels that using specialized jargon terms for when we do those things only contributes to the already-widespread impression that we are not quite human.

Rather than attempt to paraphrase further, I will let ABFH speak for herself:
Here's a brief scenario to illustrate the point: Let's say a mother takes her two young children, one of whom is autistic, with her when she does the grocery shopping. The autistic child starts crying because he is overwhelmed by the bright lights and the busy, crowded, noisy environment. The mom grabs a few groceries and hurries to the checkout. Then the non-autistic child starts whining and crying because the mom wouldn't buy her a toy. The mom pays for the groceries and angrily marches the kids out to the minivan. When she gets home, she's still fuming, and after sending the kids to their rooms to take a nap, she goes to an Internet support forum and vents about her son's "autistic meltdown" for the next half-hour or so.

All three people in this scenario lost their temper because they had trouble handling a stressful situation. The autistic kid hadn't yet developed the coping skills needed to deal with the sensory difficulties of the supermarket; his sister didn't know how to manage her frustration when she was not given the toy she wanted; and the mom got upset because of the noise the children were making and, perhaps, because of the embarrassment of being in a public place with two noisy children. But only the autistic kid was described as having a "meltdown."

I have used "meltdown" and "shutdown" both to attempt to describe emotional states that I do not believe many NTs have; specifically, I use "shutdown" (or, since my boyfriend started using it, "implosion") to refer to the semi-catatonic state I enter when depressed, depressed AND overloaded, or overloaded to the point of exhaustion. I use "meltdown" to refer to the acute stage of overload in which I become hypervigilant and agitated, when I still have sufficient mental and volitional wherewithal to try to escape the overloading situation. (More often, I simply use "overloaded" to refer to both stages, but I have used both of the words ABFH denounces as counterproductive).

Her posts have led me to reconsider that policy. At least on this blog, where one of my aims is to describe, precisely, vividly and coherently, my experiences with autism for use as a lens for critiquing others' writing about autism, I have decided that those words, by virtue of being jargon, obscure more than they illuminate. They're a shortcut. You might, in conversation with one who already knows you well, mention having a "meltdown" and expect them to know what that entails, but on the Internet everyone brings their own definition to the table. To counter this, I choose to be detailed and explicit. That's got as much to do with my conception of what this blog is as it has with any overarching political idea (Ballastexistenz in the comments on those posts made a good case for the use of those terms as a feature of online autistic culture, and as a genuine effort by autistics to define and characterize their own experiences).

Wednesday, August 27, 2008

Autism and Intentional Communities

These two posts at And Stimming With Rainbows of Every Design struck a chord with me. I actually panicked a bit reading the first one, since I am on the record praising rural intentional communities for their autistic-friendliness (or, rather, praising one particular community, The Farm, for its friendliness to one particular autist, me). I had to go and reread that particular post to make sure I had not inadvertently implied that rural community living as The One Answer for all autistic people, because that was not my intent.

Danechi raises an important question in the second post that I link, dealing with Bittersweet Farms. BSF, along with the community Danechi's parents are involved in planning, and along with these two other autism-centered communities I found here, appears to be less an intentional community of, by and for primarily autistic people and more a group home set in a rural environment. Danechi worries, rightly, that these communities simply represent the kinder, gentler face of institutionalization.

Of the three fully-established communities I listed above, it is Bittersweet Farms that looks most institution-like to me. It is overseen by the Ohio Department of Mental Retardation and Developmental Disabilities, with its membership coming from caseworker referrals. So, people do not come to BSF; they are placed there. The arrangement of government at BSF is also quite hierarchical: there is a Board of Directors, there are staff members and then there are the actual residents. There are treatment regimes, lots of structured activities, and training geared toward "develop[ing] skills of independent living."

Of the other two communities, I was not able to find much detail about The Brookwood Community, except that it is Christian-based and its citizens work at flower gardening and handicrafts, the products of which are sold online or at three stores. The other place, Farmsteads of New England, describes itself as "a human services agency that has developed an intentional farming community that caters to the needs of people who have autism or other developmental disabilities." It was founded by a special educator who wanted to create a good work environment for her son, whom she believed could not succeed in a conventional workplace, and whom she did not want to put in a sheltered workshop, where she believed the work would be repetitive and meaningless. Its website emphasizes principles of "least restrictive environment," "innate value and dignity" and "self-determination." Like BSF, FNE is essentially a cluster of rural group homes, with a high staff-to-resident ratio and various day programs in basic self-care, life skills and farm work.

I'm not knocking the educational or assisted-living services these places offer. People need those things, and many autistics have additional medical problems that require specialist oversight. Learning to take care of yourself is also one of the most empowering things you can do, and something many autistic people struggle to master. No, what bothers me about these communities is the apparent lack of participation by the autistic residents in the governance of their own communities and the shapes of their own lives. From reading the mission statements of BSF and FNE, it seems that the intentional community is formed of the parents and staff, with the autistic residents existing as the focus of the community but not having any say in that community, or even being members in their own right.

I did find one apparently self-governing, egalitarian community of autistics here, though.

Monday, August 18, 2008

Appignanesi's Pendulum: A Historical Perspective on Mental Illness

Lisa Appignanesi's Mad, Bad and Sad: Women and the Mind Doctors attempts to chronicle two hundred years of women's experience of mental illness, and of medical science's attempts to understand and treat their changing symptoms. These two threads run mostly in parallel, with each chapter showcasing a handful of case histories and biographies of notable theorists, all the while embedding them within the cultural and social context of their time.

For the sections dealing with the neurologists, psychiatrists, psychoanalysts and "alienists" who populate psychiatric history, providing context primarily means showing each school's ideas and methods growing out of, or in reaction to, those ideas that came before. What this means, as Appignanesi makes clear, is that the history of psychology and psychiatry is somewhat cyclical, oscillating back and forth between opposite poles of thinking. The particular dichotomy with which Appignanesi most concerns herself is that between psychodynamic and biological psychiatry. Both camps are represented in every time period, but their respective popularity and standing wax and wane.

Appignanesi herself seems to favor the psychodynamic view; she thinks the current mania for brain imaging and tinkering with neurotransmitters loses sight of the fact that physical indicators (like unusual patterns of electrical activity or an excess or shortage of a particular neurotransmitter) can as easily be effects as causes.

To assume that sadness, even in its malignant form, is caused by a chemical imbalance may not be an altogether useful hypothesis or a particularly true one. I feel sad when my dog dies. That causes a change in my brain. The emotion isn't caused by the brain. Everything animate beings do or feel --- from watching a football match, to kissing, to eating --- causes complicated chemical change. But no amount of serotonin will bring Mr. Darcy to the door, make England win the World Cup, bring peace to warring neighbours or end global warming.

She thinks a mental-health system that focuses primarily (or only) on medication overlooks the beneficial elements of talk therapy, like personal growth, time away from unhealthy circumstances or relationships, having an outlet for problematic thoughts or feelings, and just plain human interaction.

She also draws a curious parallel between what she calls a culture of "cosmetic psychopharmacology" and the world of illicit street drugs. Both, she says, reduce human experience to a series of chemical reactions that can be adjusted for maximum enjoyment. She gives examples where the line between recreational and therapeutic drug use becomes blurred: high-achieving professionals (or students) using stimulants to boost performance, or research into adapting club drugs, like ketamine or MDMA to clinical use. She also points out that the same needs could drive a person to seek out either option for relief.

Apart from those few provocative arguments, which she confines mostly to the Introduction and Epilogue (though she does have a chapter on "Drugs," into which a lot of her criticisms of psychopharmacology diffuse), the rest of the book is primarily a series of biographical vignettes framed in neutral exposition. The most colorful scenes are taken from the lives of the literary and historical personalities who sought help from the mental-health professionals of their time, with Zelda Fitzgerald, Virginia Woolf, Sylvia Plath, Marilyn Monroe, Alice James, Sabina Spielrein and Théroigne de Méricourt among the most famous.

She uses the details from these case studies to make her second major point, which is that the nature of mental illness changes along with the cultural milieu from which it arises. For me, probably the most persuasive form of this argument is that the life experiences that can catalyze a psychiatric breakdown tend to be those that are most culturally fraught. In the uptight Victorian Age, when Freud was working, the sex life was inherently problematic, especially for women. Consequently, Freud found himself swamped with young women (and men) complaining of disturbing sexual fantasies. Today, it's not sex so much as food and the body that come with cultural baggage. Accordingly, we see a lot of eating disorders in young women, and less extreme forms of eating-disordered behavior (obsessive calorie counting, making categories of "good" and "bad" foods, guilt over eating "badly") in almost every woman.
Even if you vehemently disagree with these premises (indeed, I am not willing to go as far as she does in her agnosticism toward biological psychiatry), I would still recommend reading this book. It offers a wealth of detail about each era's reigning psychiatric theory and practice, and the case histories make for compelling reading. One of the things I liked most about her selection of biographical sketches was the wide diversity of outcomes: regardless of when they were treated, and under which orthodoxy, some patients got better, some were completely cured, some learned to cope sufficiently that they went on to live full and happy lives, while others killed themselves or remained in institutions their whole lives.

Sunday, August 17, 2008


Browsing through Michelle Dawson's blog yesterday, I happened onto this entry, which yielded a surprising quote from O. Ivar Lovaas:

Terms such as high-functioning versus low-functioning children are derogatory and should be avoided.

Reference: Lovaas, O.I. (1996). The UCLA young autism model of service delivery. In C. Maurice, G. Green, & S. Luce (Eds.), Behavioral intervention for young children with autism: A manual for parents and professionals. (pp. 241-248). Austin TX: Pro-Ed.

This was unexpected for a whole lot of reasons, the main one being that Lovaas's style of behavioral treatment for autism is fairly notorious for ignoring the autistic child's inner life entirely, concerning itself only with getting the child to engage in socially-acceptable speech and play, while "extinguishing" whatever behaviors they deem aberrant. Indeed, concern for the child's feelings and well-being are entirely absent from this 1985 paper, in which he advocates ignoring or punishing all behaviors that aren't the desired behavior.

I also found this entry on the Lovaas Institute Blog dealing with language: the blogger is aware of the dehumanizing connotations of the language used to describe behavioral treatment, but rather than do anything to put the focus on the autistic child, and his or her actual needs, he just says (paraphrased): "Well, since I feel love for the kids I work with, and get all teary when they learn something, what I'm doing can't be dehumanizing!" His feelings define the interaction, it seems. Lovely.

Anyway, back to the question of using "high-" or "low-functioning" to describe autistics. As I've mentioned before on this blog, I do not use such terminology because I don't find it terribly descriptive or useful. Autism is characterized by wildly uneven levels of competence in different areas, or even in different parts of one area. Like, you might be amazingly fast with mental math, but unable to grasp the simplest kinds of mathematical reasoning. Or you might have an astonishing vocabulary but struggle with constructing sentences or arranging a paragraph. Or, for a more dramatic example, you might be completely unable to speak, but be able to write or type with great eloquence. The whole concept of "general intelligence," around which IQ is based (and, guess what, in many studies the boundary between high- and low-functioning autism is an IQ score), takes for granted an NT style of cognition. Apart from that, a given person can also vary wildly in ability within a single area over time. Day to day, I range from hyperlexic and able to carry on intellectual conversation to completely mute. With this kind of unpredictability, the same person might be high-functioning in x, y and z domains and also low-functioning in a, b and c domains, or high-functioning in x domain on Tuesday but low-functioning in x on Wednesday. Maybe it's just the Aspie in me, but I need a bit more precision in a classification scheme before I'll agree to use it.

Tuesday, August 12, 2008

Gender Variance in Autism: How Much of It Is Just Sensory?

Gender variance in autism is a huge topic*, so I'm going to restrict this post to the ways in which autistic sensory fascinations can affect gender presentation. I do not think this is an idea that very commonly occurs to NTs, since dress for them is usually about projecting an image of themselves into the world, but for us, our decisions about what to wear are more often based on how particular textures feel than what the overall visual impression will be.

(Also, I think that when we do consider the visual effect of an outfit or accessory, the intended audience is more likely to be ourselves than any observers --- I do not think it commonly occurs to us that we will be observed**).

I don't think there are very many articles on this --- research on gender and autism tends to concentrate more on differences between male and female autistics and on the incidence of co-occurring autism and gender identity disorder than on simply describing what gender expression in autistic people looks like --- so I will stick to anecdote, and restrict this post to more of a "Please be aware that unusual gender presentation by an autistic person might actually reflect that person's sensory preoccupations, with the gendered aspects of dress or accessories being entirely incidental" public-service announcement, rather than make any attempt at definitive statements.

This 1996 article by Patricia Williams, AnnaMary Allard and Lonnie Sears describes two preschool-age boys with autism who like to dress up in feminine clothing and wear towels or T-shirts on their heads to simulate long hair. The authors did not see fit to categorize them as having gender-identity disorder, preferring to explain the dress-up games as arising just from those boys' particular autism:
Perhaps even more likely [than the boys' having gender-identity problems] is that the described cross-dressing represents an unusual preoccupation in these children with autism. ... This preoccupation may relate to a need for sensory input that happens to be predominantly feminine in nature (silky objects, bright and shiny substances, movement of long hair, etc.).

From the opposite end of the gender spectrum, we have Dawn Prince-Hughes in Songs of the Gorilla Nation, describing how she looked dancing in clubs in 1980s Seattle:

...I had noticed during my first years on my own that my aloofness converged with the times --- the "me" generation 1980s --- to forge an illusion that I was very cool indeed. Another component of my "mystique" was my appearance: I wore leather jackets because their weight and thickness calmed me; dark glasses, sometimes even at night, because they cut out some of the stimulation to my nervous system; and heavy boots that made me feel secure and grounded as I clomped around in them. I must have looked like a perfect practiced stud with all the trimmings, but in reality I was withdrawn and armored primarily out of anxiety and confusion.

Prince-Hughes's wardrobe performs a dual function: it wraps her in textures and sensations she finds pleasing (the feel of leather, the weight of the boots) and also shields her from unwanted sensory inputs that might overwhelm her. This is an elegant solution that allows her to go out to clubs, dance and enjoy herself rather than sink into overload (a problem I frequently have on dance floors); how other people perceive her hardly enters her mind.

For me, dress and adornment provide outlets for multiple sensory fixations: I wear mostly long pants, preferring soft textures like velveteen or corduroy or, for shirts, soft knits or smooth, silky materials; I tend to cover up extensively to protect my skin from unwanted sensation; and I accessorize like a mad magpie. I've got a particular fascination with shiny objects, so when I wear lots and lots of gaudy jewelry, especially rings (which I often do), I often hypnotize myself looking at them as my hands move through the air. I also like to wear long, trailing skirts, the movement of which I find soothing. The femininity of these clothes is somewhat at odds with my persona and self-concept, which are both quite masculine.

(I thought a description as detailed as the one above cried out for a picture, so here it is. This is me about four years ago --- you can see the mad-magpie principle at work in that wicked claw. The colorful cord cutting across my chest is the strap of a purse that I made myself: it's red, with a yellow-and-blue star embroidered on the side and a strap made from twelve strands of yellow, blue and red yarn braided together. The outfit I'm wearing is a black knit shirt, very old --- it's starting to pill --- and very, very soft, with black corduroy pants. Not exactly fashion-forward, but very comfortable.)

*My own hypothesis about why there seems to be a lot of unusual gender expression in autistic people is fairly simple: gender is essentially a continuous improvised performance of a role whose nature is never explicitly communicated to you, and whose script you have to pick up from subtle social cues, starting in childhood. It's probably the single most intensively-socialized thing humans do, and the one whose "rules" are the least explicit. Since autistic people are notoriously resistant to socialization, it just makes sense that we wouldn't pick up as much of the gender programming as NTs do.

** This is tricky to explain to NTs, because it seems to imply that we (however many autistics share this thought) believe we cannot be seen. No, it's just that we fail to realize that anyone is looking. In my experience, people around me blend seamlessly into the rest of the environment, melting into a sort of amorphous soup of shape, color, noise and movement rather than standing out as conscious beings. Some autism theorists point to this, and things like this, as evidence that autistics lack a "theory of mind," which I think misses the point somewhat. Of course I know people have beliefs, thoughts, feelings and whatever, and I possess sufficient imagination to come up with what they might be. It's just that my perception does not separate human-made stimuli from other, environmental stimuli. If you're talking to me, I cannot pay any more attention to you than I pay to other conversations, traffic noise, the wind, the patterns of light and shadow, birdsong or insect buzzing. This is not because I do not realize you're a conscious being trying to interact with me, but rather because my mental processing lacks the power to filter its input.

Monday, August 11, 2008

From Darkness Into Beauty: Dawn Prince-Hughes's Autistic Odyssey (Autyessy*?)

Dawn Prince-Hughes's memoir Songs of the Gorilla Nation is a very short book (my copy has 224 pages, with wide margins and 1.5 line spacing), but it's densely packed with ideas. There are three of those ideas that I intend to tackle in this post (a fourth will get a post all its own): first, the effect of having or not having a diagnosis on an autistic's emotional well-being; second, the usefulness (and increasing availability!) of alternative methods of getting training in one's field for people who might not be able to handle a traditional college experience; and third, the astonishing degree of empathy Prince-Hughes demonstrates in her writing about gorillas and other apes. That empathy calls to mind Temple Grandin's gift of understanding domestic animals' emotions, behaviors and thought processes, and casts doubt on the common belief that autistic people do not empathize.

Prince-Hughes describes the course of her life as an emergence "from the darkness (of autism) into the beauty of it." Notice that she does not stop at emerging from the darkness; there's a place (a beautiful place) that she is emerging to, and that place is also contained within autism. She matures, she develops, she finds success, purpose, love and family, and she remains autistic.

Here is Prince-Hughes in her Introduction:

When I speak of emerging from the darkness of autism, I do not mean that I offer a success story neatly wrapped and finished with a "cure." I and others who are autistic do not want to be cured. What I mean when I say "emergence" is that my soul was lifted from the context of my earlier autism and became autistic in another context, one filled with wonder and discovery and full of the feelings that so poetically inform each human life. When I emerged, I learned --- from the gorillas --- far better how I could achieve these things.

Later in the book she speaks of a pattern of unhappiness and alienation that she sees over and over in the childhood memories of other autistics who were diagnosed in adulthood: they (and she) experienced childhood and young adulthood as long stretches of "isolation, confusion and depression" occasionally interrupted by "islands of happiness." The undiagnosed autistic child, Prince-Hughes thinks, is utterly alone in the world, knowing he or she is very different but not knowing there is anyone else like him or her.

I can assure you that not only does the autistic person always know they are different, but they suffer deeply from not knowing why. While they try to come to understand themselves without having a name for their condition, other people definitely are labeling them --- and usually without the compassion that real education would bring.

As someone who got a diagnosis fairly early (I was five, and have no memory of it), I experienced the opposite of this kind of what's-wrong-with-me angst. I knew, from early on, that I represented a very rare and special kind of person, and that I was a rarity among rarities because of my uninhibited capacity for speech. I remember in third or fourth grade I took part in a TEACCH program for autistic children and their teachers, and being really proud of the fact that I had been a necessary part of these teachers' learning about autism. While there have been times, especially in middle and high school, when I felt stigmatized (in high school I mostly felt like I was unfairly enrolled in special ed --- I was an honor student, took a lot of hard classes and felt like having an IEP diminished that), my experience of myself as autistic is overwhelmingly one of pride. I think that's a direct result of my having known, all my life that I remember, what I was. I had the luxury of reading books about people like me, participating in special programs for people like me, and identifying the particular ways in which I fitted (or didn't fit) the diagnostic criteria.

I think much of what Prince-Hughes calls "the darkness of autism" comes from growing up without a diagnosis: school was an unending nightmare for her because she was socially awkward, had no friends, hostile teachers (and, later, fellow students who beat her up for being lesbian) and a wildly uneven skill set that meant that while she read works of philosophy and literature at home, at school she struggled with basic math and got mostly Fs. Rather than get any special help for her problems (or advanced material for her strong suits), she was just written off by most of her teachers: her third-grade teacher took sadistic pleasure in announcing her failing grades to the class and yelling at her for not doing her multiplication tables. By seventh grade, she was drinking heavily, right on school grounds. Part of this might also reflect the time period in which she went to school: she was born in 1964, and so would have been in elementary school in the early seventies. (IDEA was only implemented in 1975. Today, a diagnosis of autism or Asperger syndrome, coupled with difficulty in certain subject areas, would lead to the child's teachers and parents drafting an IEP to help the child overcome his or her particular weaknesses, but I'm not sure what, if anything, elementary-school teachers in Carbondale, Illinois in 1972 or '73 could have done to help an autistic student).

It was this miserable school experience that convinced Prince-Hughes she could not possibly go to college. She dropped out of high school at age sixteen, roamed around the country for several years living on the streets, in abandoned buildings or with various friends and acquaintances until she ended up in Seattle working as an exotic dancer. From there, following an epiphany she had in the zoo, during her first encounter with a gorilla, she got involved with a local technical school's animal-science program, which allowed her to complete her degree as an independent study while working at the zoo taking care of the animals as part of her training. Later, she was able to earn a PhD in interdisciplinary anthropology from a Swiss university that also allowed her to continue her solitary studies, working one-on-one with a mentor rather than going to classes.

The thing that surprised her most as she was trying to set up this unusual educational pathway was other people's willingness to help her. While her memories of school make the prospect of getting a degree a scary one, she finds everyone she talks to is ready to accommodate her:

I was lucky. People helped me. I made many calls and followed many leads. I found an animal science program in a technical college that allowed me to work externally in mentoring situations. I learned that I could get involved in zoo programs and work with the people who ran them to expand my knowledge. People, to my amazement, assured me that all I had to do was ask, and they would help me learn and achieve my goals.
It was in her work at the zoo that Prince-Hughes began to see some of the gifts autism had given her: acute observational skills, diligence and exactitude in following directions, a tendency to record every detail of the gorillas' behavior, no matter how small --- all of these helped her become an expert on gorillas, which got the zoo's director of research to notice her and agree to help her design research projects that could get her bachelor's and master's degrees in anthropology. Seeing her potential, he volunteered to do the very work that most stymies an autistic person (i.e., navigating "the system") for her.

Her experiences at the zoo also predated her getting an official diagnosis of autism, which suggests to me another factor that probably contributes to the darkness of autism: lack of control over your circumstances. It's in the nature of autism to thrive and excel in really specific, narrowly defined areas, and in all other fields to be totally at sea. It's also in the nature of autism to be extremely susceptible to environmental stressors: you might be a great microbiologist, say, but the moment you try to work for a pharmaceutical company you find the fluorescent lights in the lab drive you crazy and make you unable to concentrate. When Prince-Hughes was going to school, she was being asked to do a lot of things, some of which she did well and most of which she did poorly. She was asked to do each of these things for the same amount of time every day, in an environment that was itself hugely taxing to her. At the zoo, she chose her environment (the zoo was her island of peace within the city, which she hated) and she chose what she'd be doing. She still had some difficulties (she has trouble processing spoken instructions, and often won't do what she is told to do; also, if she is interrupted she won't be able to get back on task), but because she loves the zoo and the work she does so much, she stays motivated to do the best she can. She has greater opportunity to shine at these self-chosen tasks than she did at her school assignments, most of which were inscrutable to her.

Despite all the help she received from humans, it is the gorillas Prince-Hughes credits with showing her her niche. Before she worked at the zoo, she went there just to hang around and watch the gorillas in her spare time. She was immediately drawn to them on the first day she went to the zoo; their slowness and quiet make them more accessible to her than humans, who move quickly and demand eye contact and verbal response. She also empathized with them when people would heckle them and try to get them to do tricks; she remembered people harassing her in the same way. Over time, she moves from just watching them to interacting with them, and forming bonds with them, and she comes to think of herself as having a moral obligation to help gorillas, which provides the impetus for her search for an individualized degree program. (Just getting on the phone and dealing with people is very scary for an autistic person, and it's worse when you're trying to talk to people you don't know about something you have no idea how to do. Prince-Hughes also had additional fears coming from her bad experiences in school. She might not have even gone through with it if she didn't feel an obligation to do so).

The gorillas did more than make Prince-Hughes feel at home and give her a purpose in life: they also taught her much about emotions and social behavior. Because their interactions took place at a slower pace than humans', and did not involve so many stimuli, Prince-Hughes was better able to glean actual information from them. They taught her, among other things, the place of ritual in social life, the need to use body language to give your speech context, the function of humor, the reasons for anger, and the (sometimes) close relationship between anger and love. She learns how the silverback (dominant male and patriarch of a group) sets the emotional tone of a group of gorillas, and takes "silverback ethics" as her own: she vows to be mindful of her moods' effect on those around her, and take care not to cause pain or anxiety in those who love her. The gorillas give her what she had been missing all her previous life: a sense of belonging, both to a group (the gorillas) and to a role (the gorillas' spokeswoman in the human world).

*I have decided that a new genre-defining word is in order. There's already "autiebiography," for autobiographies of autistic people, but some autobiographies have more of a Bildungsroman quality to them, with an emphasis on the author's intellectual development and how they got to where they are now. I have made up the word "autyessy" for autiebiographies dealing specifically with how the author gets from point A (whether it's a physical, intellectual or spiritual Point A) to point B (same). Another criterion, I think, is that the author's experience of autism should change --- like Prince-Hughes's did when she moved out of the darkness of autism into its beauty.

Monday, August 4, 2008

The More Things Change ...

I'm about halfway through Lisa Appignanesi's Mad, Bad and Sad: Women and the Mind Doctors, and it's full of interesting stuff. One of the points she makes that I found most interesting was that the symptoms of each historical period's most-talked-about disorders tended to reflect the social concerns of their time and place, particularly questions of what it means to be a woman. Some disorders, like neurasthenia*, resulted in their female sufferers embodying an extreme version of their time's ideal of femininity --- the neurasthenic woman was so delicate she could not get up out of bed, or turn the lights on. Reading, writing or rigorous intellectual work were out of the question, as doctors prescribing the "rest cure" were wont to insist.

Neurasthenia could also be invoked as a bogeyman to threaten women who wanted to pursue independent, nontraditional lives: the literature of the time was full of claims that women's nerves were weaker than men's, and could not handle the strain of serious mental activity.

This is a matter of physiology, not a matter of sentiment; it is not a mere question of larger or smaller muscles, but of the ... nerve force which drives the intellectual and muscular machinery; not a question of two bodies and minds that are in equal physical condition, but of one body and mind capable of sustained and regular hard labour, and another body and mind which for one quarter of each month, during the best years of life, is more or less sick and unfit for hard work. (Henry Maudsley, "Sex in Mind and Education," quoted in Appignanesi)

[S]uffice it to say that multitudes of our young girls are merely pretty to look at, or not that; that their destiny is the shawl and the sofa, neuralgia, weak backs, and the varied forms of hysteria, that domestic demon which has produced untold discomfort in many a household, and, I am almost ready to say, as much unhappiness as the husband's dram.
During some of these [teenage] years they are undergoing such organic development as renders them remarkably sensitive. At seventeen I presume that healthy girls are as well able to study, with proper precautions, as men; but before this time overuse, or even a very steady use, of the brain is in many dangerous to health and to every probability of future womanly usefulness. (Silas Weir Mitchell, Wear and Tear, or, Hints for the Overworked)

The growth of this peculiar and marvellous [reproductive] apparatus, in the perfect development of which humanity has so large an interest, occurs during the few years of a girl's educational life. No such extraordinary task, calling for such rapid expenditure of force, building up such a delicate and extensive mechanism within the organism ... is imposed upon the male physique at the same epoch. The organization of the male grows steadily, gradually, and equally, from birth to maturity. The importance of having our methods of female education ... allow a sufficient opportunity for the healthy development of the ovaries and their accessory organs, and for the establishment of their periodical functions, cannot be overestimated. ...There have been instances, and I have seen such, of females in whom the special mechanism we are speaking of remained germinal, undeveloped. It seemed to have been aborted. They graduated from school or college excellent scholars, but with undeveloped ovaries. Later they married,and were sterile. (Edward H. Clarke, Sex in Education) (All emphases mine.)

These dire imaginings have a familiar ring for me, and not just because I've read some women's history books. No, these alarms are still being sounded. The controversy isn't about women's education anymore --- on that right, at least, almost everyone agrees --- but about women putting off marriage and children to start careers. Since the 1980s, women have been bombarded with messages about how our fertility and marriageability decline drastically throughout our late twenties and early thirties. Intellectual work is again set at odds with future marriage and parenthood, not because of some imagined physical rivalry between the brain and the uterus, but because women supposedly do not have enough time to "do it all." The same specter of the dried-up, childless thirtysomething spinster is still evoked as the ultimate fate of the too-bookish or ambitious woman, and it is still assumed that women, unlike men, have to choose between family life and meaningful work. The messages are the same; it's only the rationalizations that have changed.

*Neurasthenia could also be seen as a literal manifestation of the Victorians' ambivalence toward industrial modernity and urbanization, as Appignanesi says: "The times themselves, it seemed, were a shock to the nervous system, with their crowds and dirt, and the inevitable 'decadence' that followed."