Saturday, October 27, 2007

Perspectives on Autism

Though all the reading for this week was interesting, I made an immediate connection between the novel “Banishing Verona”, and Dr. Sack’s chapter of “An Anthropologist on Mars” by the same name. There seemed to be a profound understanding in both pieces of how autism can fit into the broader life of an affected individual. And I was moved by the underlying story in both accounts of a person living with autism, in contrast to an account of how an autistic person is forced to live life.
Years ago I had an English teacher who insisted that everything human beings said and did was motivated by a desire to be emotionally close to one-another. Parties, sex, drugs, music, television; she insisted all of these were attempts to share something. In her opinion human sentience was such a lonely existence that part of our “drive” as a species was to achieve some kind of connection with another person.
I’ve always thought she was over-simplifying things. I know there are times in my life (perhaps most of the time) when I want to be close to others, to be on the same page and have a kind of mutual understanding. But there are also times (definitely less often, but equally as distinct) when I want the opposite. Sometimes I don’t feel the need, for whatever reason, to form an artificial connection with someone I really don’t like, or I find myself in one of those moods in which I’d much rather be by myself for a while then surrounded by lots of other people.
When Dr. Sacks asks Temple if, when she looks up at the stars, she does not “get a feeling of grandeur” I was moved by her simple response. “I intellectually understand its grandeur”, she tells him wisely. This struck me as an incredibly honest and perceptive thing to say. I know I occasionally have the experience of being moved intellectually, rather then emotionally, by a sight such as the night sky. It is rare for an individual to always see things in terms of grandeur and awe; we’d wear ourselves out if everything around us produced such wonder.
Though I can’t possibly know the kind of isolation and feeling of being inherently different that some people with autism describe, I can sympathize with the feeling of not always being entirely in touch with my own emotions or those of the people around me.
Thus, I was pleased to find a fair amount of optimism and empathy in both Dr. Sack’s case study involving Temple Grandin, and the pages of “Banishing Verona”.
When Oliver Sacks describes Temple Grandin he includes his own account of the way in which she goes about her life; her dedication to her work, her own opinions about the way in which her mind is different from other’s, and her level of compassion and almost supernatural ability to empathize with herd animals. But included in his account there is also a marked understanding of the role that human interaction and emotional understanding play in Temple’s life. Sacks seems to understand that Temple’s mind isn’t merely a hallow shell, filled pitifully by her work and her logical reasoning, but is instead the hopes and confusions of a complicated and evolving human being. As always, Sacks seems optimistic in his description, continuously emphasizing both the ways in Temple is unique, and the ways in which she is striving to understand her own different.
Like Sacks, Livesey is in many ways compassionate in her description of an individual affected by Aspergers. For what does Livesey emphasize if not the idea that we’re all a bit in the dark when it comes to relationships and human interaction? What does Zeke portray if not the sort of difficulties in communication understanding that we all have to lesser extent? At one point in the book Zeke points out that sometimes, when it is socially expected of him to offer a greeting, he just doesn’t feel like it. Can’t we all sympathize with this on some level? We smile at someone even though we’re not really fond of him or her, or we stop to make small talk even if we’re in a rush to get somewhere. I know there are moments when I follow social conventions not because I feel the desire to do so, but merely because I know they are expected.
Thus, I found both Sack’s and Livesey’s perceptions of autistic patients to be refreshingly open-minded. Both chose to see human life as something broader then merely the connections we form with others; chose not to define a person’s existence merely by the ease with which they connect emotionally. Rather then seeing a high-functioning autistic individual as someone who will never be able to function in certain ways, shouldn’t we view them instead as demonstrating just how difficult communication and understanding can be for all of us? If we choose to see autistic individuals as sharing somewhat accentuated aspects of our own personalities, rather then seeing their limitations and deficits, perhaps we can better understand the mindset of those affected.

Friday, October 26, 2007

Outside Perspective

I think there is great parallel play in both the New Yorker article under the same name and Livesey’s book Banishing Verona—actually I believe they are more perpendicular than parallel, if I am going to use this geometric metaphor.
Livesey does an interesting job of making the neurology of her characters the least of the characters' worries. I constantly have to smack myself when I get frustrated when I read, thinking ‘where is the psychology; where is the disorder,” when I am not really reading the story. I really have to get in the mindset of the story, not the disorder. It brings this to a larger point. These people are not their disease. They’re not “schizos” or “mentally disabled’ no more than I am a “man” or people are “gay” or “Asian.” I think as a society we tend to be seriously label conscious –look at the modern day prom or turn on MTVs super sweet sixteen if you don’t believe me—and Livesey does a great job of tearing away for that. I wonder if it is a seriously an American problem and doesn’t exist as much in the UK, but I find that hard to believe. When I’m reading her books he characters realities seem to be so secure that they almost don’t seem ill at all. That their way of thinking, like Zeke finding places to store food and water when working, makes perfect sense, or doesn’t seem too bizarre—and infact, our reality of “normal” life seem a bit strange. Take this section on page 135 in her book into advisement:

He had noticed that before, how people slammed a loose cupboard door, poked at a hole in her show, making sure that what was already fragile fell apart.

We all do those things, perhaps subconsciously and yet her characters, that may not get things like a simple social interaction on the street, pick up deep, subtle things like this passage noted above, how we tend to prode and poke our problems, making them worse. I'm guilty of such.

Perhaps I was rash in my judgments not to see any parallels in these pieces—I was never that good in geometry, infact I believe I passed mostly because my great colouring skills shows serious “effort” on my part.

Our New Yorker articles states “people with Asperger’s syndrome can tell us of their experiences, their inner feelings and states, whereas those with classical autism cannot. With classical autism there is no ‘window,’ and we can only infer.” So they offer this unique sense of view which they CAN explain to us. Asperger’s syndrome is so interesting to me. They are anthropologists in their own right. They have to study our (because they don’t seem to belong to it in their own minds) culture and find their way. With our customs and beliefs. Think of him reading Emily Post’s “Etiquette,” to learn everything about what was proper— I know my grandmother would have been happy and he would have been invited over any Sunday dinner. Because if you think about it, our beliefs must be strange to a complete objective party. For Religion, Christians attend church and drink the blood and eat the flesh or a man, or believe they do; in death, we drain the blood of the body, we embalm the corpse with chemicals so they last, like preserve in the kitchen cabinet. To us these activities seem so normal (mostly), but it would understanding how “outside the box’ these individuals would feel existing in a world where they wouldn’t understand the individuals!
Can you think of any other rituals that would appear “strange” to the outside individual?
Do you agree with this? Would you consider them outside or just another facet of humanity?
Are they missing our or are they more connected because they must learn, understand and then accept these rituals that we naturally associate into our lives?
Or should they celebrate what they call “neurodiversity?”
Is this part of our evolution or just a simple reordering of genes?
-- I know I’ve asked a lot here so just run with an idea or try to tie them together.

On a final note:
As quoted in the New Yorker, “My first and most powerful obsession was music—the same records played again and again while I watched them spin, astonished at their evocation of aural worlds that I not only instinctively understood even as a toddler but in which I actually felt comfortable.”—Again we see music as a cure or atleast a coping mechanism. Now unfortunately I missed Sacks’s talk (and we’ve seen that in his case studies like our ever famous Man who Mistook his Wife for a Hat) but did he give us any insight into the magic of music? Is there some about the implicit organization of chaos with notes on a sheet of music? Or is it simply soothing? What?

Hope you all had a good study break and I look forward to seeing you Monday,

Thursday, October 25, 2007

Low Flying Aircraft

A couple of weeks ago, I read a story called "Low Flying Aircraft" by J.G. Ballard. In the story, the population of humans on Earth had dwindled and it was generally accepted that the species was dying out. The cause of the sharp decrease in population was an alarming rise in a specific kind of birth defect; the majority of children were born blind, with incredibly deformed limbs and heads. Babies who were born like this were quickly euthanized to be put out of their misery.

In any case, by the end of the story it is made known that a number of these deformed children have been allowed to live into adulthood, and they have colonized abandoned parts of England. The twist at the end of Ballard's story is that these seemingly sickeningly malformed beings were not "defected" at all; they represented a new kind of species, a mutation of humans, that would inherit the Earth after the last of the humans died out.

Most importantly, these people were not blind per se - they could see and communicate with this special kind of silvery metal paint that they use to mark their surroundings. In this way they were actually superior to humans, because they could see things in the silver paint that their non-deformed predecessors couldn't.

Well, I thought about this story while I read "Prodigies," "Banishing Verona," and "Parallel Play" this week. The realization that a condition long considered a "deformity" or "disability" might actually represent a simple different way of being or experiencing the world is a common theme for all of these stories. It is in fact a common theme among bloggers who write about autism (I'm thinking specifically of a woman named Amanda Baggs whose website, Ballastexistenz, focuses on autism and disability rights).

We talked in class about the fact that homosexuality used to be considered a disease and in fact was listed in the DSM for many years. "Transgender disorder," someone pointed out, is still listed in the DSM. So is autism. Should they be? In some ways, yes, autistics are deficient. As Oliver Sacks explains, autism consists of "a consistent traid of impairments: impairment of social interaction with others, impairment of verbal and nonverbal communication, and impairment of play and imaginative activities" (246).

Well, there are some ways in which we are all "impaired," when we are compared with others. Compared to the way that my father (who is not autistic - just an example) can calculate sums in his head, I am impaired. I think that everyone comes to realize, sometime in childhood, that there are some things some people do better than others and some things some people do worse than others - that's non-debatable.

Autism isn't just about "impairment," then. It's about the impairment of a specific set of skills that we feel make us human: those that have to do with socializing. Impairment is acceptable only so long as you can make a joke about it: the fact that you can say, "Oh, I'm so bad at math," somehow makes it understandable. You can't say, "Oh, I'm so bad at relationships with other people." Somehow having a grasp of seemingly straightforward social niceties isn't something that you can laugh off. Somehow, while we don't presume that everyone is good at math or understanding literature, we do presume that all "normal" people are pretty decent at getting along with others.

Why, then? Well, I mentioned before - it makes us human, supposedly. Human relationships are far more complicated than animal ones. We take their complexity for granted because we are programmed to understand them. Autistics, however, are not.

As always, what we take for granted are our implicit abilities. Take Zeke, for example, who has to go "through the steps he'd learned from the poster he'd been given at the clinic" to understand that Verona was smiling at him (4). What kind of person, you might think, has to do that? Recognizing a smile doesn't seem like something you have to think about, or even something that you learn. Babies can understand facial expressions. It's something "built in."

Even more interesting and baffling, I think, than the thought that someone might lack an ability that is "built in" to all of our "normal," neurotypical minds, is the thought that such a person might have abilities "built in" that we DON'T have. I get the feeling that the general opinion on intelligence, before a couple of decades ago, was an "all or nothing" thing. If someone was "retarded," they were "retarded." There were no "different types" of intelligence.

Yet we see this in people like Stephen who "could draw, with the greatest ease, any street he had seen; but he could not, unaided, cross one by himself" (203). This seems strange to us, but would it seem strange if I told you that I have always been excellent at reading but had troubles with arithmetic? You wouldn't, because the two are seemingly unconnected. I'm simply not a "math person."

But it does not always happen, however, that someone who is bad at arithmetic is automatically good at reading, or vice versa. The strange thing about autism is that it seems to come with a certain, fixed set of strengths and weaknesses, as if they were linked somehow. True, not all autistics are prodigies like Stephen, but a commonality among autistics seems to be the tendency to see parts, and not the whole - which aids in Stephen's drawings but keeps him from understanding and appreciating the "big picture." There are other commonalities: "it is typical of autistic people, sometimes in early childhood, that they acquire geometrical conepts and terms to a far greater degree than personal or social ones," says Sacks (229).

Autism doesn't seem as unpredictable and varied as, say, schizophrenia. Autistics, in my experience, don't represent entirely different expressions of the same illness - as in schizophrenia, there are different types of the disease: paranoid, catatonic, hebephrenic, etc. - but rather different points on a spectrum.

So, there are people like Zeke, who is labeled an "oddball," "gets freaked out by things most people wouldn't even notice," and has problems with recognizing facial expressions and knowing how to behave in social situations (90) - all common with autism - but does not have symptoms severe enough to keep him from going to college, having a job, having a relationship - he "passes," for the most part, as a "normal person." The symptoms of his Asperger's are more likely to be called "quirks" or "idiosyncrasies" by people who don't know him well.

And then there are people like Stephen, who can probably never live on his own; who has a very low verbal IQ of 52 (202); and who did not speak until the age of nine (201). In his emotional development and talent for art he is very similar to Jose, who lives in an institution.

I believe that Tim Page is somewhere between Stephen and Zeke on the autistic spectrum. He barely made it through school, but he is clearly independent and self-supporting. And then, I think, Asperger's syndrome is somewhere between autism and "normal." Are we all on the autistic scale?

Some tend to think so. Page writes that "there is even some question whether it [Asperger's] should be considered an affliction or merely a "difference" - one of many human variants" (5).

Sacks says,

"Stephen's development has been singular, qualitatively different, from the start. He constructs the universe i a different way - and his mode of cognition, his identity, his artistic gifts, go together. We do not know, finally, how Stephen thinks, how he constructs the world, how he is able to draw and sing. But we do know that though he may be lacking in the symbolic, the abstract, he has a sort of genius for concrete or mimetic representations ... a sort of genius for catching the formal features, the structural logic, the style, the 'thisness' (though not necessarily the 'meaning') of whatever he portrays" (241).

We all know someone who is a little awkward in social situations, although he or she does not have Apserger's or autism. We all know someone who is particularly adept at socializing. Autism represents the extreme of that "awkward" person's difficulties. It is possible to conceive of a scale where people are positioned according to their capability in math or writing. The problem is, math and writing - while unique to humans - are not typically considered the things that make us human.

But it is possible we only think that way because so many people are decent at socializing. Even if you don't consider yourself a social butterfly, it's likely you know how to respond to simple "polite" questions like, "How are you?" and "Nice weather, isn't it?" which have no real purpose beyond to engage another person socially. But is knowing the answers to these questions really what makes us people? Maybe, if you define "humanness" by a person's reactions to others. The idea that you might define a person as human by their interactions with other humans seems flawed, somehow. What, then, is a human when there are other people around?

Whatever autism is, I don't believe that it is something to be "cured," and neither do autistics. Unless the "cure" for autism cosists of a change in our understanding of autism, and not the autistics themselves. I'm sure some autistics may think that it would be nice to be able to interact more easily with other people, so that they don't have to suffer the kind of aggravation a person gets from being "different." I would like to be able to add and multiply things better. I would not, however, sacrifice my identity for it. If being bad at arithmetic is part of my identity, I wouldn't lose it. It's not always a deficit, you know. I've met many nice people from needing to ask some random person, "What's twelve times eight?" Stephen Wiltshire has built a career out of his savant talents. I'm sure that other autistic people, who may not have become famous from their autism, nonetheless experience benefits from their unique perception of the world.