Monday, December 10, 2007
Here are the posts:
Two from Kristina Chew of Autism Vox, dealing with Cure Autism Now founder Portia Iverson's book Strange Son: Two Mothers, Two Sons, and a Quest to Unlock the Hidden World of Autism.
There's also this post from Ballastexistenz, with links to three posts on an older blog of hers, all dealing with rhetoric used by non-autistic autism advocates, including Cure Autism Now. Unfortunately, those links appear to be dead. The posts can be found here, here and here, though.
She also has an entire category for examples of changeling stereotypes on her old blog; she cites The Siege, which my mom actually used to own, but which I never read, and Let Me Hear Your Voice as employing changeling rhetoric. So now I guess I need to track those books down.
Thursday, December 6, 2007
The study compared 30 children on the autism spectrum (12 with autism, 11 with PDD-NOS, two with Asperger syndromeand five with some other ASD) with 30 other autistic children who matched them in age, gender, and language skills. When one member of the pair got sick (with any illness that caused a fever of at least 100.4 degrees), the parents of both children would answer the questions on the Aberrant Behavior Checklist, which asks about five categories of odd behavior: irritability, lethargy, hyperactivity, stereotypy (repetitive movements, rituals ... common autistic ones are hand-flapping or rocking; a common neurotypical one is pacing the floor), and inappropriate speech. There were three points in time when these data were collected: during the fever, while the fever was going down, and when the child had gotten well again.
The study found that on four of the five subscales (irritability, hyperactivity, stereotypy, and inappropriate language), the feverish children scored significantly lower (i.e., more normal) than the nonfeverish ones. They scored higher on the lethargy subscale (which, along with the lower levels of hyperactivity, should surprise no one; they're sick!). The researchers did some fairly exhaustive statistical analysis to determine the extent to which the lessening of "aberrant" behaviors could be ascribed to the children's lower overall level of activity due to the sickness, and finding that lower scores on the four subscales were unrelated to either the severity of the fever or higher scores on the lethargy subscale. So, while general tiredness and malaise probably accounts for some of the change, it can't be the only factor at work, or else the kids with the highest fevers, or highest lethargy scores, would consistently be the ones to show the most improvement, which they're not.
There are a lot of limitations on this study, though: for one, the study population is really small (only 30 kids, plus the 30 controls) and represents a mind-boggling variety of ages, abilities, medications and other confoundings factors; second, the kids did not all have the same sickness. The only criterion for inclusion in the experimental group was that they have a fever. That could be any number of different infectious agents.
The researchers themselves have a list of methodological weaknesses, too:
Although subgroup comparisons suggest some specificity of the fever effect, the study did not include a comparison group of children with nonfebrile illnesses. Our measures of behavior were based solely on parent reports; these data are subject to information biases. Because symptom data were collected prospectively, however, recall bias, a major source of information bias, was likely limited. Future studies may benefit from including independent raters (eg, teachers) or using videos to limit subjective misclassification of changes in behavior. Selection bias is also possible because a small fraction of eligible families from recruitment sources participated. Just more than half of families in the final analysis sample reported a priori that they thought that fever affected their children's behaviors, and this proportion may be higher than that of the general population of parents of children with ASDs...
So, in the final reckoning, what we have here is a slightly more systematic recording of what had previously existed only as anecdote. The sample size is too small and the number of confounding variables is too large to say they've definitively isolated a trend. If anything, the study points as much to our ignorance of fever, and what happens to the body during a fever, as it does to our ignorance of autism. Both topics certainly merit further study.
It wasn't really my intention to be so long about the technical aspects of this article; I'll try to be brief and just mention in passing its metaphorical subtext. The old wives' tale the researchers were investigating has it that during a fever, autistic symptoms will diminish, sometimes dramatically. It's as if a veil has been lifted, goes the metaphor, and parents can see their *real* child before he slips behind the haze of autism once more.
This kind of revelatory moment exists also in the changeling myth, which I attempted in the last post to argue is the lens through which most people still see autism. If you have a changeling, legends say (as per Wikipedia) that you can cause it to reveal its true nature, usually by doing something odd like brewing beer in an acorn shell. The changeling will then say something highly ritualized that no human child would say, like "I've seen (a lot of things, indicative of the fairy child's great age), but I've never seen beer brewed in an acorn shell," and then either disappear, leaving the human child, or stay there, revealed, and the parent would have to think of a way to drive it away and regain his or her actual offspring. I think the belief that autism will abate during a fever calls back to this scenario: a specific set of circumstances reveals the enigmatic, frustrating child as he really is, and gives the parent hope that he or she won't always be stuck with a cipher. It externalizes the child's autism, makes it something that has happened to the child rather than part of who the child happens to be. And it might well give the parents hope to think of their child this way, but I think it's a false hope, or at least a severely conditional one. It predicates happiness on the child's finding its way to socially acceptable normalcy, whereas when one accepts autism as not being inherently bad, just different, one is able to love and take joy in the child regardless of outcome.
Wednesday, November 28, 2007
A bitch was pleased to read that Senator Clinton would increase funding into autism research and education…
…but I’d like to see some of that money go to adult autistics too.
Oh, I know that the press is in love with autism right now because the revised spectrum has resulted in a better understanding of just how common an autism diagnosis is.
But the press has failed…horribly…to point out that autism is not a childhood illness just because symptoms appear when a person is a child.
Autistics grow up.
I left a comment at Feministe that tried to express what I think underlies this failure of the news media, or public policy, to acknowledge the existence of autistic adults and the fact that children with autism do develop, even if it is at a different rate and in a different way. I'm not sure it comes across in the comment, but I think the popular image of autism has a lot in common with the old story of the changeling --- a human child stolen by fairies and replaced with a strange, inhuman substitute. A lot of the terminology people use when they're describing autistic children --- in their own world, cut off from other people, walled off behind the autism --- has an undertone of otherworldliness or abduction. My child doesn't live in the world, or alternately, my child used to be fine and healthy, but now he's different and I don't understand it at all.
I have a vague idea that there might be a book written on this subject, but darned if I can remember the title, or find it on Amazon.
Wednesday, November 14, 2007
On one level, I'm intrigued by this decision, since Blackwolf counters a lot of the most common sterotypes about autistic people. He's described as attractive, physically graceful, and charismatic, and he functions as a love interest for both Fatale and Damsel (his ex-wife). He's also not shown as having any particular difficulty understanding social dynamics; indeed, in one scene where Damsel's parents are taking her to task for her handling of the Doctor Impossible situation, Blackwolf rises spontaneously to her defense. Without even being prompted, he knows that she's feeling distressed and needs him to stand up for her. It may just be that he'd had enough practice mediating between her and her parents in their marriage, but even that sounds like an improbably diplomatic role for an autistic person to take. While it's awesome to have a character clearly labeled "autistic" who does all these things we don't often see autistic characters doing, problems arise when the character has so little in common with the category "autistic" that, rather than broaden the category, we question his inclusion in it.
There are a couple passages where we see hints of his autistic nature. The first describes a fight between Doctor Impossible and the Champions, in which Doctor Impossible (he of the "Malign Hypercognition Disorder") expresses a sort of mystified admiration of Blackwolf's unusual thought processes:
He's got that twitchy autistic look he gets in a fight, his odd neurology hyperaccelerating, problem solving in real time.
Bearing in mind how "hyperaccelerated" Impossible's own cognition is supposed to be, this is high praise indeed, possibly indicating a tactical savantism on Blackwolf's part. Later in the fight, Blackwolf slips away and surprises Impossible, indicating that he did plan out his actions ahead of time, while the evil genius was busy holding off the other Champions. And since everywhere else in the book, it is Blackwolf who is in awe of Impossible's intelligence and who despairs of ever anticipating his plan, his ability to outthink Impossible must apply only in very narrow circumstances, i.e. during a physical fight. Having narrow, hyper-specific areas of genius that rise far above one's general intelligence level is the defining characteristic of savantism, and autistic cognition in general, even among non-savants, is very uneven. It would make perfect sense from that standpoint for Blackwolf to be smarter than Doctor Impossible in some contexts and hopelessly outclassed by him in others.
In the other passage, Fatale tries to act on her feelings for Blackwolf, only to have him push her away:
Our lips touch, and for a second it's everything I thought it would be. The metal in my jaw is awkward but somehow exciting, and he kisses back. ... Then I make a mistake. I reach for the mask, and he catches my arm, ready to break it. His jaw sets, and I'm dealing with Blackwolf again. It's like watching a different personality take hold, and I get a glimpse of what he's been holding back, a terrible, unappeasable mourning. Something really god-awful must have happened to him at some point.
Blackwolf's obsession with avenging his lost siblings rules his life. Obsessions and compulsions are indeed a part of autism, but I see a more powerful authorial motive than mere verisimilitude at work here, one that explains the overall lack of depth to Blackwolf's exposition. The two things I've singled out as most autistic in Blackwolf, his inscrutable mind and his rigid obsession with vengeance, are also the things that alienate him most from the other characters, that make him most clearly "Other." Doctor Impossible and Fatale both marvel at him, wondering what could possibly lurk in that brain of his:
I wonder what makes him this way, what primal, originary scene branded him with an obsession that makes him dress like an animal, and helps him fight. Who does he see when he looks at me?
...I get a glimpse of what he's been holding back, a terrible, unappeasable mourning.
The other members of the Champions, as I detailed in the last post, are all isolated by their powers. Their powers, and whatever price their bodies pay for those powers, dictate every aspect of their lives. They are utterly alone, Grossman tries to emphasize. Because Blackwolf lacks a power, he had to be given something that would make him as alone as Fatale, with her amnesia and her metal body, or Damsel, with her alien parentage and force field. His autism, therefore, is a metaphor for what Grossman feels the real price of superhuman ability would be. As such, it is not and probably was never meant to be accurately portrayed, which is lame insofar as it fails to invest a character with sufficient depth to be truly alive to the reader. Ideally, a metaphor should succeed both on the literal level, as an accurate depiction of the object or idea being used in the metaphor, and on the allegorical level in which it stands in for something else. Blackwolf never rises above the level of a cipher, which not only fails to endear him to us but also leaves us with a superficial idea of autism. Autism, as embodied in Blackwolf, is just isolation, just a state of arrested development. We get no insight as to what it's like to inhabit his strange, unevenly brilliant mind, no concept of him as an individual. So, as much as I love Soon I Will Be Invincible for its clever plays on the comic-book idiom, I'm disappointed by its lazy use of its one autistic character.
Sunday, November 11, 2007
An ongoing theme of the novel, voiced at different times by its heroine, Fatale, and its villain, Doctor Impossible, is that superheroes (and -villains) pay a physical price for their power:
[Doctor Impossible] learned ... to spot the telltales of power: the stutter-step of a bad nerve operation, and the alien hybrids, Altairian eyes and Enderri hands. How to look at the way superheroes walk ... and see what happened to their bodies, once upon a time. Most of them had paid a price for their power, and for most of them it was too high.That holds true not only for the bottom-tier freaks and strongmen that Doctor Impossible meets during his early career, but also for elite superheroes like Fatale's group, the Champions. Fatale herself is a cyborg, having had her body rebuilt after a car accident that destroyed half of her real body. She has no memory of her former life, she needs to be constantly on immune-suppressing drugs to tolerate her implanted circuitry, her added height and weight make her somewhat awkward and graceless, and she is infertile. The leader of the Champions, Damsel, is an invulnerable flying powerhouse whose bizarre alien-hybrid metabolism has her constantly throwing up (Fatale initially believes she has bulimia), and a teenage sidekick, Rainbow Triumph, is on an extensive drug regimen, both to keep her, too, from rejecting her cyborg implants and to hold off the degenerative bone disease that's slowly killing her. The level of sheer physical dysfunction that the Champions have to deal with every day is brought home when Fatale describes her teammates' nightly routines, spying on them with her x-ray vision:
[Rainbow Triumph] opens a metal briefcase and begins opening pill bottles and boxes, until fourteen pills, capsules, and dietary chews are lined up on the edge of the marble sink in front of her. She does it every twelve hours. She's probably been doing it since she was seven; maybe it's to fix whatever was wrong with her in the first place. ...
Underneath my feet, Blackwolf [a Batmanlike martial artist/detective]washes his hands for a full five minutes before popping three or four painkillers, which explains a lot. Then he pushes the little room's furniture to the side and puts himself through a series of calisthenic exercises ...
Feral [a huge cat-person, super-strong and a fierce fighter] drops to all fours when he's alone, and sleeps curled in a ball. I think he has back problems from trying to stand on two legs all the time.
Besides the physical (and, often, psychological) complications of the kind of altered physiology a superhero would have, Grossman's characters also have to deal with a larger society that marginalizes them. The personality quirks that lead characters to choose heroism or villainy over civilian existence are labeled disordered on both sides: Doctor Impossible is said to have "Malign Hypercognition Disorder," literally evil genius syndrome, while Fatale, quitting her job as a mercenary to fight crime, is accused of having "an adjustment disorder." Fatale is regarded with extreme suspicion by her landlord, who requires her to put in a thick carpet at her own expense, and to sign a series of waivers before he will rent to her. Doctor Impossible and another villain, Laserator, are both brilliant scientists who nevertheless are unable to succeed in academia; Laserator languishes in an obscure professorship while Doctor Impossible quits "legitimate" science as a postdoc, after watching himself grow older and older than his classmates while failing to do any serious work.
In the passage containing the description of the Champions' pill-popping bedtime rituals, Fatale articulates what might well be the novel's guiding thesis on what it's like to live as a superhero:
For everyone else, it's a momentary fantasy. They don't have to take them into the kitchen, the bathroom, and the bedroom. Or wake up in the night in flames, or sweep up shattered glass in their apartment, or show up late for work with a black eye. No one else knows where they itch or bruise you, or has tried the things you've tried with them when you were bored or desperate. No one else falls asleep with them and finds them still there in the morning, a dream that won't disperse upon waking.
This litany of domestic details strikes me as particularly relevant from a disability-rights perspective: no one but us knows what it's really like to live with whatever it is we live with. No one but us knows our real "quality of life," the constellation of small, intimate details that define our condition. The passage was meant to de-romanticize the superpowered life, as experienced by our ambivalent and somewhat cynical narrator, but just as she wants to dispel the "momentary fantasy" of how wonderful it is to be a superpowered crimefighter, a similar passage would also work to dispel the equally one-dimensional vision of horror most nondisabled people imagine when contemplating disability.
Monday, October 15, 2007
Something I noticed when I first read about Ashley X on feminist blogs, and that I see now reading about Katie Thorpe, is that the feminist community seems to be conflicted over these cases. Some bloggers thought the girls' rights had been violated, others thought the caregivers should have the freedom to do whatever they think is in their charges' best interest, and still others were not comfortable enough to make a judgment one way or another. The extent of this diversity, and the intensity of the disagreements, surprised me, as I had thought this was a fairly straightforward instance of these girls' rights being ignored because it was convenient to ignore them and their disabilities made it impossible for them to advocate for themselves --- in other words, sexism and ablism. Case closed, right?
What I have come to find, though, is that several feminist narratives are at work in these stories, and it's along those pre-existing lines that the feminist commentary fractures. Yes, there is the paternalistic medical system, with its history of pathologizing the female body, particularly the reproductive organs. There's also the traditional role of women as unpaid caregivers, both of children and of infirm adult relatives. Indeed, caregiving is still primarily women's work, and is almost always either unpaid or underpaid. And finally, there's the sterilization divide: white women who want sterilization can't get it, while women of color find it pushed on them. (It's worth noticing that one of the blogs to come out aggressively opposed to the Ashley Treatment was the Women of Color Blog, which does go into the fear of forced sterilization).
Another thing that goes into it is the fact that nothing about gender is neutral in our culture. Ashley's parents specifically mentioned a fear of rape as one of the reasons they didn't want her to mature --- they thought (probably mistakenly) that she would be less likely to be raped if she didn't look like a woman, and they also wanted to make sure she couldn't be impregnated by a rapist. Just being a woman in our culture makes you prey to a wide range of Very Bad Things, from institutionalized, bureaucratic sexism to individual, personal types of victimization like stalking, domestic abuse or rape. Maybe her parents thought they could fool society, or nature, or whomever, by disguising their daughter as not-a-woman. Not that that excuses it, but if that is part of the rationale, what a sad commentary on our society.
There's probably enough material in all those feminist archetypes for every woman to find some part of her own story echoed in Ashley and Katie's story, which is why we see such a clamor of voices. Women who've grown up fearing forced sterilization, women who are primary caregivers or work in healthcare, women with disabilities and women who have experienced some form of violation by a health professional (e.g. birthrape) can all identify with some element of the stories. So, I've come to believe, the problem isn't that feminists aren't identifying with this story, but that there is so much they can identify with. And there aren't a lot of easy answers there --- we demand humane care for people with disabilities, but we have to be aware that that's a burden that will fall disproportionately on women. We ask for sterilization on demand, without being second-guessed or told we'll change our minds, but we also need to remember to ask not to push sterilization on women who don't want it, regardless of what the doctor thinks is "best" for them or their potential children. This is not to say that any of these things is impossible, or that we shouldn't agitate for these things. We should agitate for them all, and for change in society such that would make them all go together, rather than seem contradictory.
Wednesday, October 10, 2007
While this analogy does indeed comprise the main premise of the book, Grandin does a variety of things to make it work, and to avoid either anthropomorphizing her animal subjects or objectifying her human ones. Of these, the most striking is the way she draws narrow, specifically-defined boundaries around her analogy, marking out a small number of areas of similarity between autistic and animal perception and processing. Those areas are:
- Hyperspecificity --- this term, she says, comes from autism research but it equally applicable to animals. It means the person, or animal, is so detail-oriented that even when they're dealing with categories of things, those categories are usually very specific and narrow, making generalization difficult.
- Sensory immediacy --- also related to the importance of detail in animals' and autistic people's lives; while most people filter what they perceive to get a general idea, autistics (and animals) have to experience what's around them in great detail. As Grandin puts it, animals and autistic people are dealing with the world in terms of "raw data," while normal people are actually seeing their own mental model of the world, which may be simpler and cleaner, but doesn't include everything there is. That's where the phenomenon of "inattentional blindness," or not seeing what's in right in front of you, comes in.
- Simple, intense emotion, coupled with a lack of "mixed emotions" or ambivalence.
- Visual thinking
The book keeps coming back to these traits to explain a wide variety of the animal behaviors that puzzle farmers, owners and trainers, and to Grandin's sharing those traits to explain her success in solving the problems that baffle so many others. While describing her work as a consultant in the meatpacking industry, she stresses the importance of putting herself in the animals' place, walking where they would walk, even ducking her head so she sees what they would see. While she does this, visual details that would spook the cattle jump out at her, so she can easily tell the plant's operators what the problem is. This brings us to another important constraint Grandin places on her analogy: she limits its scope to what she's been able to verify empirically. Her predictions of what an animal will need in its environment to be happy, and of what kinds of things scare them, or what types of training will succeed or fail, are almost always borne out, and she can draw on a lot of peer-reviewed animal research to support her ideas. She also tells us that her expertise in animal behavior is not purely instinctive; she's had to develop it over the years, fusing her awareness of how her own brain works with the theoretical and practical knowledge she's acquired over the course of her career. "I wasn't any horse-whispering autistic savant (as a girl)," she tells us in Chapter 1, "I just loved the horses."
Another thing she does that strengthens the central analogy between animals and autistic people is show how a normal human's thought patterns and cognitive biases can work against understanding animals. Normal humans are very abstract thinkers, quick to generalize, and very verbal, while animals and autistics are concrete, visual, hyperspecific thinkers. In a section on animal welfare, Grandin contrasts the clear, simple ten-point checklist she uses to audit meatpacking plants with the much longer checklists verbal thinkers tend to devise. Her checklist looks for outward signs of distress in the cattle or gross mishandling by the workers, while the verbal thinkers usually want to peek into every aspect of the plant's operation.
She also directly addresses the problem of anthropomorphism, which she says was a cardinal sin when she went to college, in behaviorism's heyday. She draws a distinction between blindly supposing an animal's mental states to be like a human's, as when people believe a dog feels "guilty" about messing on the floor, and being mindful of the animal's point of view, as she tries to be.
Overall, the book is a primer on animal handling, with a lot of side trips into the areas of animal intelligence, psychology and brain research. It's organized into seven chapters, each one dealing with a broad topic like "Animal Aggression" or "How Animals Think," and each chapter is divided into small sections devoted to a small aspect of that broad topic. Colorful anecdotes are her preferred method of demonstrating the general principles she lays out, featuring both human and animal characters. Her writing style is very direct and literal, with very few metaphors. If anything, her writing is more notable for its "unpacking" of popularly used metaphors --- particularly in the chapter on "Animal Feelings," she'll describe research on the biology of emotion in animals to show the literal truth of the sayings. In a section titled "Love Hurts," she details research on opioid receptors in the brain and their relation to social behavior, and in the last paragraphs of the preceding section she tries to tie research on the body's temperature-regulation system and its possible role in social behavior to metaphors of affective warmth or coldness. I am not well-informed enough to assess the soundness of those links, but I think her choice to include them shows a concrete, literal approach to metaphor that fits right in with what she describes as the core traits of the autistic mind.
Though the whole book is filled with variations on the central analogy, I think the last two chapters, "How Animals Think" and "Animal Genius: Extreme Talents" make explicit what I think of as the essential message of the book. These chapters summarize research findings that animals can solve problems, use language, and even develop incredible talents that very few people could. Though "skeptics" who doubt those findings are periodically invoked, Grandin admits that not enough is known to determine how much animals' brains can do, or how sophisticated their communication systems are. She seems to invoke the Other Side not to much to debate them as to use them as foils, pitting her own optimism and empathy against their anthrocentrism.
If the history of animal research is anything to go on, we probably don't even know what we think we know, since every time researchers think they've proved animals can't do something along comes an animal who can.
I think autistic people are included in this assessment, too, since she refers to research on their abilities along with the animal research, and expresses regret that their talents are not put to more use by industry. This, to me, is the most powerful result of the analogy she's built her book around: this recognition of both animals and autistic people as having been overlooked. The analogy hasn't blurred any lines between the two groups, or simplified her portrayal of them; it's only an admission of how little is really known about either, and how much both have to offer a world that's historically only acknowledged one kind of intelligence.
Tuesday, September 4, 2007
- Narrative - some research indicates that autistic people tell and interpret stories differently than neurotypicals. How do autistic writers tend to structure the stories they write? Do neurotypical authors do anything unusual with narrative structure to try and capture the mental states of their autistic characters? What effect do these variations in narrative structure have on the reader?
- Metaphor - what metaphors are used in the book? How do they try to shape a reader's thoughts about autism or autistic people?
- Distance - how is the distance between the reader and the autistic character(s) used in the book? Is any attempt made to bridge it? If it is not bridged, is there a thematic reason for it?
- Empathy - autistic writers make some unusual connections in their work, often by the process of intuitive identification we call empathy. With whom or what does the author identify, and what does that identification tell readers about his/her experience of autism?
- First contact - many autism-related memoirs, whether written by autistics or by parents of autistics, focus on the issue of "overcoming" autism and beginning to engage with the wider world. How does the "first contact" episode inform the rest of the narrative? What does the way the narrative is structured say about the importance of this episode in the author's eyes?
- Gender and autism - girls with autism often experience conflict between autistic identity and the role they are expected to play as women. Autism itself is a highly gendered category, with 4 of 5 autistics being male and with the overall picture of autism based on a male template. How do autistic women and girls deal with pressure to be "feminine" in ways that don't come naturally to them? How do they establish an identity as "autistic" when the male model of autism might not wholly apply to them? What themes do female autistic authors deal with that male authors do not? Does "the autistic experience" seem to vary across the genders?
These are the Big Themes that we'll come to again and again on this blog; if I were teaching a class in this, these would be on the syllabus. These are also the likely topics of free-standing posts in the future.
I will take this opportunity to sketch, briefly, an outline of the shape I want this blog to take. The main content will be essays on the portrayal of autism, and the handling of autism-related issues, in the books I single out for discussion. There will also be the occasional essay on a single theme, in which many books are discussed in the context of one or two general points about autism writing, but mostly you'll see a near-constant 1:1 book-post ratio.
I intend to range all across genres in the books I write about here, from autiebiography (Thinking in Pictures, Emergence: Labeled Autistic, Nobody Nowhere, Somebody Somewhere and Songs of the Gorilla Nation) to science fiction (The Speed of Dark, Oryx and Crake) to mystery (The Curious Incident of the Dog in the Night-time) to other nonfiction (Diagnosing Jefferson, Animals in Translation, Unwritten Rules of Social Relationships, Women from Another Planet?). That's not a complete list of the books I intend to dissect here, but it's representative and will keep me busy for a while.
However, if any of you *are* reading, and anybody has a suggestion for a book that's not on the list, I'd be perfectly open to blogging about that, too.