Friday, January 30, 2009

The Sound and the Furry

(Hey, I warned y'all about me and puns).

My sister took this video of one of our cats:

He does this semi-routinely.

Charities: Good. Ads Depicting Said Charities' Main Clients as Monsters or Nonpersons? Bad, Very Bad.

By now, probably a lot of you have seen this:

It's an ad (created by this company) for a U.K.-based children's charity, Action for Children. It shows a tiny human figure (meant to represent the boy narrating, whose name is Dan) trapped inside a rampaging monster wreaking havoc across a vaguely dystopian urban landscape. Near the end of the spot (which is 53 seconds long), a red string wraps itself around the monster and dissolves it, freeing the child inside.* As the monster disappears, the backdrop shifts to a brightly-colored rural landscape, with hills and little birds and everything. The monster tries to get up and swallow Dan again, but Dan crushes it beneath his feet.

The monster is supposed to represent Dan's autism**.

Think about that for a moment. Imagine what it would be like, if you were a child of Dan's age --- preteen to young teen --- and you were told that something about you, some quirk of your personality --- maybe you like Transformers, say, and are always going on about Transformers to your family, friends and classmates --- was absolutely intolerable to other people. That you were so annoying it only made sense that people would snap at you, bully you, or threaten you with violence, and when you acted to defend yourself you were, of course, the violent one. As you are now, you'd probably recognize this as an abusive, victim-blaming crock of shite, right? But think about how you were at a much younger, more vulnerable age, when you might not have known how people are supposed to act, or might not yet have gotten that you, too --- with all your strangeness and awkwardness --- were entitled to fair treatment and freedom from harrassment; you might have found it easy to agree with them. "Gee," you might have said to yourself, "maybe they're right. I don't see people treating anybody else this badly, so maybe there is something about me that's making them do it."

While it's understandable for a confused, frightened autistic youth (or, heck, anybody --- all sorts of people fall for this stuff) to fall into this trap himself, it's an entirely different matter for powerful adults to coach him into accepting this explanation. Adults (and other authority figures --- police, governments, etc.) have a responsibility to protect children (all people, with the strength of the imperative increasing with the decreasing social power of the person in question) from abusers, bullies and manipulators. This is why I'm angry at Action for Children --- because they didn't step in for Dan. They let Dan carry the whole weight of what happened on his own shoulders, believing that his autism puts him in the wrong. That's inexcusable.

You can send angry emails to:

Gary Day, Action For Children -
The Action For Children Fundraising and Public Relations Department -
The Action For Children Media Team -

Laurence Sassoon, Managing Partner at Baby Creative -

(The autism blog has a template up for such letters to Mr. Day, the British Fundraising Standards Board, and Member of Parliament Hilary Armstrong).

I'd also recommend checking out blog posts on this topic by Mike Stanton, Sharon, Bev, Socrates, ABFH, Shiva, Andrea, Ettina and AnneC.

EDIT: According to Shiva, Action for Children has another horrible ad, this one about an adult with multiple sclerosis whose child had been her main caregiver. Shiva goes into great detail about what makes this horrible, so I won't say all that much, other than that it reduces the mother to a dead weight who is only a burden on her daughter.

*Autism is not a personal characteristic in this formulation, but a thing, an alien and malign force, that "has" your child and must be induced to give him up. The parents and/or caregivers are like dragon-slaying knights, while the child is merely the object of the heroic quest.
**Ah, I recognize this. This is the changeling myth! The autistic child is no longer your child, but has become (overnight!) a monstrous stranger. Again, the child is depersonalized and the parents must fight his autism, which means fighting him.

Monday, January 26, 2009

Autism, Epilepsy and Religious Experience

I had one other thought regarding Daniel Tammet's book Born on a Blue Day that I didn't bother working into my other post on that book because it didn't have anything to do with any of the other topics I raised there.

I knew before opening the book, somehow, that Tammet was a practicing Christian. What I hadn't known, and what triggered a cascade of associations and questions in my mind when I read it, was that he also had temporal-lobe epilepsy.

Seizures triggered in the temporal lobes, as this website spells out in exhaustive detail, are not the kind of seizures we typically imagine when we hear that word --- the kind where the person falls on the ground convulsing uncontrollably --- no, these seizures are often profound emotional experiences:
Within the temporal lobes of the brain is an evolutionarily ancient region called the limbic system. The main function of this system is to produce and control emotions. In particular, one important task which the limbic system performs is to "tag" sensory input with emotional significance, enabling us to determine the meaning that a person or object holds for us. When this function is disabled by brain damage, the result is Capgras' syndrome, described in Part 2 of this essay.

As with many brain structures, we know the function of the limbic system mostly by observing what happens to people in whom it is defective. Specifically, we have observed the symptoms of temporal lobe epilepsy, a condition characterized by erratic storms of random neural firing that occur in this part of the brain. When such seizures occur in areas dedicated to motor control, the result is the most well-known symptoms of epilepsy, the physical fits and powerful involuntary muscular contractions typical of so-called grand mal seizures. But when seizures occur predominantly in the temporal lobes and thus the limbic system, the predominant effects are not physical, but emotional. Patients say that their "feelings are on fire" (Ramachandran 1998, p. 179), fluctuating wildly from soaring heights of ecstasy to paralyzing depths of terror and fury.

In addition, there is another symptom frequently associated with temporal lobe epilepsy. Sufferers of the condition are often hyperreligious: they claim to have profound spiritual and mystical experiences during their seizures; they are obsessively preoccupied with theological issues, churning out meticulously detailed, elaborate and usually incomprehensible text explaining their beliefs (a condition called hypergraphia); they see cosmic significance in trivial everyday events; and they may believe they were visited by God or in God's presence, or that they have been "chosen" (Ramachandran 1998, p. 179-180). Distortions of time and space, including out-of-body experiences, often also occur (Persinger 1987, p. 123; Newberg and D'Aquili 2001, p. 110). The novelist Fyodor Dostoevsky, who is believed to have been a temporal lobe epileptic, wrote that he "touched God" during his seizures (Holmes 2001, p. 27). (all emphases mine)
Naturally, I wondered if this might not also characterize Daniel Tammet's religious experiences.

Here is his description of his first seizure:
I was sitting on the living room floor when it happened. I was four years old and sat with my brother Lee while my father was making dinner in the kitchen. It was not exceptional at that age for me to feel moments of complete disconnection, periods of total self-absorption --- studying closely the lines on the palms of my hands or watching my shifting shadow as I leaned myself back and forth in slow and rhythmic movements. But this was something else, an experience unlike any other, as though the room around me was pulling away from me on all sides and the light inside it leaking out and the flow of time itself coagulated and stretched out into a single lingering moment. I did not and could not have known it then, but I was having a massive epileptic seizure.
And here, for completeness's sake, are his thoughts on religion:
Many people are surprised to learn that I am a Christian. They imagine that being autistic makes it difficult or impossible to believe in God or explore spiritual issues. It is certainly true that my Asperger's makes it harder for me to have empathy or think abstractly, but it hasn't prevented me from thinking about deeper questions concerning such things as life and death, love and relationships. In fact, many people with autism do find benefits in religious belief or spirituality. Religion's emphasis on ritual, for example, is helpful for individuals with autistic spectrum disorders, who benefit greatly from stability and consistency. In a chapter of her autobiography entitled "Stairway to Heaven: Religion and Belief," Temple Grandin, an autistic writer and professor of animal science, describes her view of God as an ordering force in the universe. Her religious beliefs stem from her experience of working in the slaughter industry and the feeling she had that there must be something sacred about dying.

Like many people with autism, my religious activity is primarily intellectual rather than social or emotional. When I was at secondary school, I had no interest in religious education and was dismissive of the possibility of a god or that religion could be beneficial in people's lives. This was because God was not something that I could see or hear or feel, and because the religious arguments that I read or heard did not make any sense to me. The turning point came with my discovery of the writings of G. K. Chesterton, an English journalist who wrote extensively about his Christian beliefs in the early part of the twentieth century.
My autism can sometimes make it difficult for me to understand how other people might think or feel in any given situation. For this reason, my moral values are based more on ideas that are logical, make sense to me and that I have thought through carefully, than on the ability to "walk in another person's shoes." I know to treat each person I meet with kindness and respect, because I believe that each person is unique and created in God's image.

I do not often attend church, because I can become uncomfortable with having lots of people sitting and standing around me. However, on the few occasions when I have been inside a church I have found the experience very interesting and affecting. The architecture is often complex and beautiful and I really like having lots of space above my head as I look up at the high ceilings. As in childhood, I enjoy listening to hymns being sung. Music definitely helps me to experience feelings that can be described as religious, such as of unity and transcendence. My favorite song is "Ave Maria." When I hear it, I feel completely wrapped up inside the flow of the music.
So it's fairly clear from these passages that Tammet does not experience the Dostoyevskian bouts of religious ecstasy in his seizures --- the religiosity he describes is much lower-key than that kind of frenzied mysticism. If anything, Tammet's religious experiences are somewhat less mystical and ecstatic than most people's, since he says most of it is intellectual, more like a seventeenth-century philosopher's certainty that a Prime Mover exists than an ongoing personal interaction with said deity. (It is clear from his description of the hymns that he does regularly experience these profound feelings; but he also experiences them in secular contexts, i.e. with numbers. They do not form the basis of his religiosity, and are not confined to the explicitly "spiritual" dimension of his life).

I did find his comments on religion and autism in general fairly interesting. I had assumed that autistic people would not differ significantly in religious affiliation from everyone else, since the factor exerting the single greatest influence over any person's religious affiliation is the religion in which they were brought up.

I still think that's probably the case, although now that I've read his book I am somewhat curious as to the ways in which (most) autistics' religious experiences differ from those of (most) NTs, if they do at all.

Saturday, January 24, 2009

Synesthesia, savantism and Asperger's, oh my!

I just finished reading Daniel Tammet's autobiography Born on a Blue Day, which details his experiences growing up with synesthesia, savantism and undiagnosed Asperger syndrome. (He is also the eldest of ten children, and comes from a poor but very close-knit family, and has temporal-lobe epilepsy, and is gay and a Christian, but these aren't examined in the same degree of detail as those first three things are).

Though it was apparent from early infancy that Tammet was different from most children, his parents always hoped he'd go on to live a "normal" life, and did not want to burden him with a label:

Autism as a complex developmental disorder was little known among the general public at this time [when he was two and a half years old, in 1981] and my behavior was not what many assumed then to be typically autistic: I didn't rock my body continuously, I could talk and showed at least some ability to interact with the environment around me. It would be another decade before high-functioning autism, including Asperger's, would start to become recognized within the medical community and gradually better known among the public at large.

There was something else, too. My parents did not want to label me, to feel that they were holding me back in any way. More than anything else, they wanted me to be happy, healthy and able to lead a "normal" life. When friends, family and neighbors invariably asked about me, my parents told them I was very "shy" and "sensitive." I think my parents must also have been afraid of the possible stigma attached to having a child with developmental problems.
I hear this a lot from people I meet who've been diagnosed with Asperger syndrome as adults; their parents knew they weren't exactly normal, even very young, but they either didn't think it was anything significant (I know someone who says his parents just thought he was "weird"), or thought the risks of being pigeonholed as "learning-disabled" outweighed whatever possible benefits might come from having a diagnosis. (See this post by ABFH for an example of the latter possibility).

Several features stick out to me about Tammet's description of his experience of autism: first, because he wasn't diagnosed until later in life (at age 25 --- probably after he became famous for reciting pi), he grew into an understanding of himself and his peculiarities, rather than knowing from the start that he was different in certain internally-consistent ways, and represented a distinct type of person (as I have known for most of my life). However, his story does not have the sense you see in a lot of autobiographical writings by long-undiagnosed autistics of a mystery finally being solved when the diagnosis is gained --- indeed, he doesn't dramatize it at all. He also doesn't separate his autism from his synesthesia or his savant abilities. If anything, he gives the impression that the latter two, at least, are inextricably linked: He can work out complex math problems in his head because of the special way he sees numbers:
Numbers are my friends, and they are always around me. Each one is unique and has its own personality. The number 11 is friendly and 5 is loud, whereas 4 is both shy and quiet --- it's my favorite number, perhaps because it reminds me of myself. Some are big --- 23, 667, 1,179 --- while others are small: 6, 13, 581. Some are beautiful, like 333, and some are ugly, like 289. To me, every number is special.
I never write anything down when I'm calculating, because I've always been able to do the sums in my head, and it's much easier for me to visualize the answer using my synesthetic shapes than to try to follow the "carry the one" techniques taught in the textbooks we are given at school. When multiplying, I see the two numbers as distinct shapes. The image changes and a third shape emerges --- the correct answer. The process takes a matter of seconds and happens spontaneously. It's like doing math without having to think.
(Though I am not a savant, and do not have synesthesia, I can relate to what he says about not having to think. My thought processes seem, even to me, to be strangely passive, more like I am watching them unfold than creating them.)

Back to Tammet:
Different tasks involve different shapes, and I also have various sensations or emotions for certain numbers. Whenever I multiply with 11 I always experience a feeling of digits tumbling downwards in my head. I find 6s hardest to remember of all the numbers, because I experience them as tiny black dots, without any distinctive shape or texture. I would describe them as like little gaps or holes. I have visual and sometimes emotional responses to every number up to 10,000, like having my own visual, numerical vocabulary. And just like a poet's choice of words, I find some combinations of numbers more beautiful than others: ones go well with darker numbers like 8s and 9s, but not so well with 6s. A telephone number with the sequence 189 is much more beautiful to me than one with a sequence like 116.

This aesthetic dimension to my synesthesia is something that has its ups and downs. If I see a number I experience as particularly beautiful on a shop sign or a car license plate, there's a shiver of excitement and pleasure. On the other hand, if the numbers don't match my experience of them --- if, for example, a shop sign's price has "99 pence" in red or green (instead of blue) --- then I find that uncomfortable and irritating.
It's like he has an extra sense in which to experience the beauty, pain and immanence of hypersensitivity.

This visuo-numeric synesthesia also gives rise to one of the few instances of figurative language in the book: describing his record-breaking recitation of pi to 22,514 digits, he says, "It felt as though I had run a marathon in my head." For most of the book, his language is really straightforward and artless, and I suspect that this, too, is not so much a decorative flourish as a literal description. He describes the digits of pi coming together to form a landscape in his head, which he moves through as he thinks of all the numbers:
When I look at a series of numbers, my head begins to fill with colors, shapes and textures that knit together spontaneously to form a visual landscape. These are always very beautiful to me; as a child I often spent hours at a time exploring numerical landscapes in my mind. To recall each digit, I simply retrace the different shapes and textures in my head and read the numbers out of them.
At the end of each segment of numbers, the landscape changes and new shapes, colors and textures appear. This process continues on and on, for as long as the sequence of digits that I am recalling.

The most famous sequence of numbers in pi is the Feynman point, which comprises the 762nd through the 767th decimal places of pi: ...999999... It is named after the physicist Richard Feynman for his remark that he would like to memorize the digits of pi as far as that point so that when reciting them, he would be able to finish with: "... nine, nine, nine, nine, nine, nine, and so on." The Feynman point is visually very beautiful to me; I see it as a deep, thick rim of dark blue light.

There is a similarly beautiful sequence of digits comprising the 19,437th through 19,453rd decimal places of pi: "...99992128599999399 ...," where the digit 9 repeats first four times in a row, then very shortly afterwards five times over and then twice more again; eleven times altogether in this space of 17 decimal places. It is my favorite sequence of pi's digits in all the more than 22,500 that I learned.

(Earlier in the book, he describes nines as evoking particular feelings of awe and reverence for him --- they are dark blue, huge and at once beautiful and terrifying. Who says autistics can't experience complex emotions?)

There are three aspects of his experience with autism that I found strikingly like my own: first, he had a large, boisterous family with whom he was very close, and who gave him a lot of love and support; second, he had a long period of near-complete solipsism; and, third, he had a very active imagination. He wrote long, involved stories throughout his childhood, and once he started to develop social awareness and feelings of loneliness and exclusion, he conjured up an imaginary friend: an ancient, wise woman named Anne who was as alone as he (her husband being long-dead) and who understood and accepted young Daniel when no one else could. Looking back, he considers her a personification of his feelings of aloneness, and her eventual disappearance a consequence of his decision to concentrate on finding friends in the real world. He had relatively few friends in childhood --- the two boys he does mention making friends with are both foreign-born, and thus shared some of his outsiderdom --- but as he matured, he found it easier and easier to make friends. When he turns eighteen, he joins a volunteer organization and goes to Lithuania for a year to teach English. In Lithuania, he makes friends readily with both native Lithuanians and fellow volunteers.
My experiences abroad had undoubtedly changed me. For one thing, I had learned a great deal about myself. I could see more clearly than ever before how my "differences" affected my day-to-day life, especially my interactions with other people. I had eventually come to understand that friendship was a delicate, gradual process that mustn't be rushed or seized upon but allowed and encouraged to take its course over time. I pictured it as a butterfly, simultaneously beautiful and fragile, that once afloat belonged to the air and any attempt to grab at it would only destroy it. I recalled how in the past at school I had lost potential friendships because, lacking social instinct, I had tried too hard and made completely the wrong impression.

Lithuania had also allowed me to step back from myself and come to terms with my "differentness" by illustrating the fact that it needn't be a negative thing. As a foreigner I had been able to teach English to my Lithuanian students and tell them all about life in Britain. Not being the same as everyone else had been a positive advantage to me in Kaunas, and an opportunity to help others.
One last thing he mentions that I found interesting was his deep empathy with animals. He doesn't spend a lot of time on this subject, but there is one incredibly moving passage about meeting his boyfriend's cat:
I have always loved animals, from my childhood fascination with ladybirds to avidly watching wildlife programs on television. I think one reason is that animals are often more patient and accepting than many people. After I first moved in with Neil, I spent a lot of time with his cat, Jay. She was then a little less than two years old and very aloof, preferring to spend all her time out alone wandering around the neighborhood gardens and growling whenever Neil tried to pat or hold her. ... At first I kept my distance, knowing that she was unused to having someone around regularly. Instead, I waited for her natural curiosity to start to work and indeed it wasn't long before she would walk up to me as I was sitting in the living room, and sniff at my feet and hands if I lowered them for her to rub with her nose. Over time, Jay started to spend more and more time indoors. Whenever she came in, I would kneel down until my face was level with hers and slowly extend my hand around her head and stroke her in the same way that I had watched her stroke the fur on her back with her tongue. Then she would purr and open and close her eyes sleepily and I knew that I had won her affection.

Jay was a smart and sensitive cat. Sometimes I lay down on the floor for her to sit on my chest or tummy and snooze. ... Once Jay was sitting on me, I would close my eyes and slow down my breathing so that she thought I was dozing too. She would then feel reassured, because she knew that I would not be making any sudden movements, and relax and stay close to me. Often I wore one of my thick, coarse sweaters, even in warm weather, because I knew that Jay preferred their texture to smooth T-shirts or other clothes.

For all her affection, at various times Jay could still be remote and indifferent towards us and especially towards Neil, something that I knew upset him very much. I suggested to him that what she needed was a companion, another cat to interact regularly with. I hoped she would learn social skills in the process and become more approachable.
Look at the sensitivity he's showing there, the keen attunement to the cat's feelings, needs and desires. He knows not to overwhelm her, to wait for her to initiate the relationship on her terms, and he knows her tactile preferences. (Impressive enough, he knows that tactile sensation is important to her, and knows that she has certain preferred textures). Temple Grandin has written extensively about her own strong feelings of empathy for some animals --- for her it's livestock, particularly cattle, with which she feels a deep connection. If I'm remembering rightly, she had some trouble getting cats to like her; she was too rough in her handling of them, squeezing instead of stroking, since deep pressure was the kind of touch she craved, and could not stand lighter touches.

That's not to suggest that autistics are some kind of naturally-occurring Dog Whisperers; no, the furthest I would go with this particular anecdatum would be to propose that people (autistic or not) empathize most readily with minds most like their own. Tammet is shy, easily overwhelmed and mindful of sensory stimuli; accordingly he found a skittish cat fairly easy to befriend. Similarly, Grandin is highly visual, prone to anxiety attacks and easily startled by things in her peripheral vision; accordingly, she is able to anticipate what might spook a cow, and eliminate such things from her slaughterhouses. This is why autistics often cannot decipher the motivations of NTs --- not because we are fundamentally incapable of empathy, but because our minds work quite differently from theirs, and it requires quite a bit of imagination to predict an unfamiliar NT person's reaction successfully. (It's also worth pointing out that NTs are just as blind to our motivations, feelings and mental states as we are to theirs --- consider all the descriptions of "meaningless" behaviors and routines, "inappropriate" emotional responses, "meltdowns" and whatever else. Because they can't imagine what might be upsetting --- or otherwise motivating --- us when we do these things, they assume there is no motivation).

Wednesday, January 14, 2009

How Dare You Be Unhappy?

(alternate title: In Defense of Bitching)

I don't normally bitch about advice columnists, but today's Dear Abby really bugged me. And since the reasons it bugged me are likely to be obscure to most people, I might as well lay them out here.

DEAR ABBY: I don't know what to do anymore. It seems like I hate everything, but I don't think I'm depressed.

I hate working, but love my salary. I hate my co-workers, but realize they're probably no worse than any other workplace. Nothing excites me, nothing motivates me. I don't like anything in particular and have never known what I wanted to do with my life. I don't want to be married or have children. I often wonder what the point of living is. I feel like I'm living every day just to get to the end of life.

I'm sure I'm not alone. Please help me and others out there who seem to have lost hope. -- NOT HAPPY IN CANADA

DEAR NOT HAPPY: Whether you recognize it or not, you may be depressed. As anyone who has read this column knows, there is medical and psychiatric help for depression, which sometimes has a physical cause.

However, as I have read and re-read your letter, I am struck by the listlessness and boredom it conveys. Perhaps you would be happier if you dwelt less on yourself and the emptiness you feel, and spent some time helping people who are less fortunate than you. Leo Rosten once wrote that the purpose of life is to matter, to be productive, to have it make a difference that you lived at all -- using the talents that God has given you for the betterment of others.

Please consider what I have said because you are spending far too much time thinking about what you're missing, and frankly may need a verbal kick in the fanny.

See, on the surface it doesn't look so bad. Ze's dissatisfied with life, and she's telling hir to try something new, broaden hir horizons and otherwise break out of hir rut.

But that's not all that's going on here.

Look at the words she uses to characterize our letter writer's mental state --- and remember that this person is already in quite a bit of pain, and has probably already worried the question of "what's wrong with me?" to death several zillion times before even writing her --- the letter writer is being selfish! Ze's dwelling on hirself, thinking too much about what ze is missing (and, by extension, what ze wants out of life and what's standing in hir way).

The always-enlightening Arthur Silber has a very old essay dealing with the suicide taboo in American (and possibly all of Western) culture. It is worth revisiting in light of the column I quoted, and the strange reaction all of American culture seems to have when a person unashamedly expresses unhappiness.
No subject is more misunderstood, even today, than suicide. ... Almost every time I discussed my suicidal thoughts with friends, it turned out to be a disastrous mistake.

It is a measure of the deep misunderstandings and unthinking moral commandments so prevalent today that a number of people have said to me over the years something like the following: "Oh, don't even think about it. It's wrong. It's selfish. Think about the pain you would cause all of those who love you, including me. Don't you see how cruel it would be? Besides, it's so weak. How could you give in to such feelings?"

...Several things should be noted about such remarks. The easy part is what we might term a general ethical point. It is more than a little absurd to say --- to someone who may be seriously contemplating wiping himself out of existence for all time --- that he's being "selfish". ...

...Here's the hard part: note what is missing in those comments. What is missing is simply this: any acknowledgement of the inexpressible anguish and pain experienced by the person who seriously considers suicide. Do you have any idea how intense and unbearable such pain must be for a person to view suicide as a viable option for more than a moment? If you don't, I suggest you think about it for a long, long time. And then think about it some more.

The truly significant part is the following: this [i.e., denial of the pain people contemplating suicide are in] is exactly the mechanism that [psychologist Alice] Miller describes. People who make comments like those (and most people have similar views) are cut off from their own pain, and they are therefore unable to empathize [with], or even recognize, pain felt by others, even when such pain is agonizingly extreme. When you make real to yourself the degree of pain someone must be feeling to think about suicide, it is simply astonishing that anyone would believe for one moment that pointing out the pain of others would be a compelling argument. In addition, there is another truly destructive element that such an approach introduces: that the person thinking of suicide should feel guilt for even considering it, much less doing it. Implying that anyone in enormous psychological pain should feel guilty about having such feelings in the first place is not precisely a useful therapeutic approach. But people often accuse those experiencing deep depression of being "cruel," "weak" and "selfish" --- and they apparently have no appreciation at all for how deeply wounding such accusations are --- particularly at a time when the person hearing them is at his most vulnerable, and possibly in grave danger. This issue cannot be overemphasized: to the extent that a person hearing such accusations views them as valid, he will feel guilt, and he will experience even greater pain --- and the possibility that he may actually kill himself thereby increases. While they delude themselves into believing they are "helping," many people thus commit great harm. (italics his, boldface mine)
To Arthur's (and Alice Miller's --- he goes on to quote from her discussion of Sylvia Plath's suicide) excellent analysis, I am going to add a bit of feminist interpretation. Blaming an unhappy person for the unhappiness they are feeling is a way to convert whatever is making them unhappy into a personal failing. Once their unhappiness has been safely relegated to the realm of characterological defects, the person has to keep their analytical, critical gaze firmly focused inward. They do not --- as they might if they were left alone --- go on to blame the patriarchy, or criticize capitalism, or the wage economy in general, or any other aspect of a global culture that does, indeed, tend to breed unhappiness in most people.

The "other people have it so much worse than you!" gambit will also be instantly recognizable to most feminists: a common antifeminist retort to criticism of Western patriarchy is to bring up Islamic or third-world patriarchy. Since the feminist who is speaking has the freedom to speak at all, the argument goes, she has nothing to complain about, and is indeed a selfish, spoiled princess for wanting more rights when other women have so few.

Shut up, be happy in your place, and be grateful you aren't one of them down there, is what the message boils down to.

Intelligence Is Racialized

In my last post, I started talking about Anna Stubblefield's talk at last September's Cognitive Disability: A Challenge to Moral Philosophy conference about the entanglement of race and intellect. Today, I'd like to post a few more excepts from that talk, which I thought were hugely eye-opening about the "double dose of oppression" disabled Americans of color receive.
[B]lack students are both more likely than white students to be labeled as special-needs students and more likely, once labeled, to be relegated to special-education ghettos rather than receiving the least restrictive, inclusive education mandated by federal law. Black adults with Down syndrome and with severe mental retardation are less likely to get the healthcare and support they need to live the longest and most independent lives possible. This is the unsurprising outcome of a social system that embraces a concept of measurable intellect that was originally designed specifically to justify the segregation and exclusion of nonwhite people, along with white people who, through poverty, ethnicity or perceived defect, were deemed undesirable.
Stubblefield argues that this kind of stratification follows perfectly from the Western way of thinking about cognitive disability:
The attribution of cognitive disability through intelligence testing is not, and has never been, a means of providing people who struggle to learn and to engage in life activities with the assistance they require. ... We can assess what people need by observing what they learn easily, and in which areas they struggle, without slapping a label on them. We can provide people with the help they need without marginalizing them in our society, whether in school or in adult life. As long as we persist with the us-them move of intellect assessment, entangled as it is with the history of oppression against nonwhite people, and as long as services exist in a social context where race and social class are salient, then nonwhite people with developmental challenges are going to receive poorer-quality services than white people with developmental challenges.
Indeed, I have read elsewhere that the original intended use of the IQ test --- as developed by Alfred Binet --- was not to rank individuals or groups, but to alert teachers to particular students who might need help in particular areas. The website I just linked to has this to say about Binet's idea of intelligence, and his intentions relating to intelligence testing:
Binet was upfront about the limitations of his scale [i.e., the concept of "mental age" on which IQ is based]. He stressed the remarkable diversity of intelligence and the subsequent need to study it using qualitative as opposed to quantitative measures. Binet also stressed that intellectual development progressed at variable rates, could be impacted by the environment and was therefore not based solely on genetics, was malleable rather than fixed, and could only be used on children with comparable backgrounds (Siegler, 1992). Given Binet's stance that intelligence testing was subject to variability and was not generalizable, it is important to look at the metamorphosis that mental testing took on as it made its way to the U.S. (emphases mine)
Imagine that, a developmental psychologist acknowledging that people don't all develop at the same rate or in the same way!

Anyway, back to Stubblefield. As she says above, we don't need to categorize people or make sweeping judgments about their overall intelligence, sentience or worth as persons to identify areas in which they may need special help. One function that intelligence testing, and the creation of a seemingly neutral arbiter of value (for, in a highly technological, industrialized culture like ours, literacy, reasoning and mathematical skill are highly valued) that often serves, in many people's minds, to validate certain other hierarchies, like those of race, class or sex.
We are still using intellect assessment as a way to categorize people on the basis of race, class and gender. It seems that we believe that doing so on the basis of a supposedly neutral notion of intelligence is more politically correct than being up-front about how categorizing people along these lines advantages those who already have social power. But even if we were to, or could, separate out this web of constructions so that we were no longer in any way drawing race, class or gender distinctions, the question would remain: “Why is it important to us to classify people on the basis of intellect?” And the answer is that doing so has no justification other than the us-them move.
(The meaning of her phrase "the us-them move" is somewhat obscure to me, though I suspect it means designating a privileged group --- an in-group --- and an out-group. As the groupings get called into question, as by various social-justice movements, the in-group needs to concoct other, fallback rationales for their privileged position. Intelligence serves as a good fallback rationale because it does tend to be found more in the already-privileged classes, so it reinforces existing hierarchies*, and it seems like an unassailable criterion of worth. Philosophers since Plato have been extolling the virtues of rule by the smartest).

Here in the US, the "existing hierarchy" that intelligence testing is supposed to uphold has a lot to do with race. Stubblefield traces the history of intelligence research in the 18th, 19th and early 20th centuries in Europe and America, and finds it can be divided into two stages:
  1. Use whatever means (typically skull volume or morphology) to show that the white race is intellectually superior.
  2. Find the "best" method of testing intelligence, taking it as given that a good measure of intelligence will give you a certain set of results --- i.e., consistently reproducing the already-decided-upon racial hierarchy.
Since, from the beginning, "intelligence" was equated with whiteness, nonwhiteness and intellectual disability were similarly conflated.
Throughout this period of research, white intellectual superiority was taken for granted, while intellectual deficiency was equated with nonwhiteness. In 1844, for example, Robert Chambers proposed a recapitulation theory of human development, arguing, “Our brain goes through the various stages of a fish’s, a reptile’s, and a mammifer’s brain, and finally becomes human. There is more than this, for after completing the animal transformation, it passes through the characters in which it appears in the Negro, Malay, American and Mongolian nations, and finally is Caucasian.” J. Langdon Down, whose name is still invoked in the classification of Down syndrome, based his understanding of intellectual deficiency on theories like Chambers’s. Expounding upon his original 1866 publication, “Ethnic Classification of Idiots,” Down wrote, “I was struck by the remarkable resemblance of feeble-minded children to the various ethnic types of the human family.” He proceeded to discuss white feeble-minded children who, in his words, “from some deteriorating influence” had been, again in his words, “removed into another ethnic type, and therefore resembled so-called Negro, Malay, North American Indian, or Mongolian people”. What is striking here is that the initial identification of white children with Down syndrome, a cause of so-called “real cognitive impairment,” was understood in terms of racial deteriorization. It is worth keeping in mind, when I discuss ways in which black Americans with developmental challenges experience discrimination in provision of support services, that Down syndrome in black children was not of interest to J. Langdon Down. His concern was with white children who had experienced racial deteriorization. Given his definition, it was not possible for a black child to have Down syndrome, since it was not possible for a black child to racially deteriorate; there was no lower rung on the racial ladder.
Robert Chambers's original paper can be read here**.

That historical context goes a long way toward explaining the findings quoted above, of poorer outcomes for black adults with Down syndrome, mostly because they do not have access to the kind of healthcare and supports that white adults with Down syndrome have.

While Down syndrome is now diagnosed via karyotyping, rather than some white doctor's subjective evaluation of how much you resemble other members of your race, even that objective, not inherently racialized diagnostic procedure is probably a lot more routine for white mothers than for black ones. Black women fare much worse than their white counterparts in terms of access to prenatal care in this country. So, even though it is no longer definitionally impossible for a black person to have Down syndrome, there is still a fair amount of diagnostic invisibility going on. And, even when there is parity in diagnosis (as in the people with Down syndrome recruited for the study described above), disparity persists in insurance coverage, ability to pay for medical tests, treatments and nonmedical support services, access to specialty clinics, housing options, and just about every other quality-of-life indicator you care to name.

You can find video of her talk here; it's very interesting, for those whose computers can handle such a big download.

*Not only because it really does occur more in those classes, because, as Binet noted, having a nurturing, stimulating environment in which to grow up improves one's chances to reach one's full intellectual potential, but also because the tests tend to assay skills that children of the privileged classes are more likely to have practiced.
**Funny-sad tidbit, courtesy of Wikipedia: Chambers's theories about human evolution and development, which were published anonymously, were considered so scientifically sloppy that many critics were convinced their author must be a woman!

Monday, January 12, 2009

Theories of Mind: Assumptions about Intelligence in Others

There's an interesting video clip posted on What Sorts of People, showing part of a talk that was given at the Cognitive Disability Conference in September.

The talk was by Dr. Anna Stubblefield, an associate professor of philosophy at Rutgers University, and it was titled "The Entanglement of Race and Cognitive Disability."

Anna Stubblefield, Associate Professor of Philosophy; Affiliate, Afro-American Studies Department and American Studies, Rutgers University, Newark. The Entanglement of Race and Cognitive Disability
ABSTRACT: Americans with developmental disabilities who are not white receive significantly lower quality educational and health care service and adult living support than do white people with developmental disabilities. This "double dose" of oppression is not coincidental, however. It results from the intertwined development of the conception of race and the conception of intelligence in the United States, a legacy that we must confront in order to achieve a just society.
The whole thing is available as a podcast here, though if your computer is at all finicky, the download will probably either take forever or cause your computer to crash. (It took forever on my computer). I have transcribed the whole thing, and emailed it to the conference's organizer, so hopefully she will post that sometime soon.

The part of the lecture posted on What Sorts of People does not deal explicitly with race; it occurs early in the talk, and lays the groundwork for an exploration of racial disparities in outcomes for people with cognitive disabilities by showing some of the assumptions that underlie conceptions of intelligence that we use today.

Here's an excerpt that resonates particularly with my own experiences:
[T]he construction of intellect is bound up with the construction of what counts as communication. People who consider themselves to possess intelligence attribute intellect to others based on how they communicate. When a person cannot understand another easily or follow his thought processes, or the latter does not give the former the answers she expects to certain kinds of questions, she concludes from that that he has cognitive deficits. Yet if she recognized the ways in which she is failing to communicate with him, by not adapting herself to his mode of communication, his language use and his pace, or by failing to appreciate his behaviours, gestures and glances as communication, she might find that he is not so unable to communicate after all. She might realize that what she took as his lack of communicative skill, and hence evidence for his cognitive deficit, is really her lack of communicative skill.

I've been defined as a lot of things throughout my academic career, and those labels (or, sometimes, the lack of a label) have definitely affected the choices that were made available to me. In elementary school, when I lived in Iowa, I was designated both gifted and special-needs, and had special accommodations made for both of those: gifted classes, speech therapy, teachers who knew my particular strengths and weaknesses, and took steps to help me get better at the things I was bad at. Now, when I moved to Kansas, I was tested for giftedness and failed; my mom blames the teacher who tested me for being massively ignorant of autism. (I have no memory whatsoever of this event, though I would have been ten when it happened; as it was told to me, there was a written IQ test and an interview, and I apparently did really well on the former and bombed the latter --- by refusing to speak. I can imagine very well my state of mind at this age, being afraid of the strange adult and knowing I should not speak to strangers because they are dangerous). At this time I also took a math test that qualified me for taking math classes two grade levels above my own, though I ended up only doing them one grade level ahead, because to take pre-algebra in sixth grade I would have had to go to another school an hour before the regular day started. I have always needed a lot of sleep, so I could tell that wouldn't work. In middle school I was generally angry, defiant, paranoid and indifferent to school, so I was not put on track for hardly any honors classes in high school. By my freshman year, this meant I was in a lot of classes that were way below where I should be, difficulty-wise, so the following three years consisted of me adding more and more classes, until my senior year I was taking three AP classes (AP American Government, AP Biology II, AP Calc I & II) and two science classes (AP Biology II and Chemistry). I also had an IEP (the special-ed kind, not the gifted kind) until my senior year, when it was formally determined I didn't need it. (As recently as sophomore year, my poor organizational skills had led to me turning major assignments in late). It was this experience of being held back that led me to keep my disability (mostly) under wraps when I went to college. I sought no assistance from the Office for Students with Disabilities, because the whole time I'd been in Kansas, being a student with a disability meant I had extra trouble accessing the classes I most belonged in. In Iowa, I had been given both the more-challenging curriculum I needed to engage my mind, while simultaneously getting the special help I needed on peripheral skills, like organization, following a schedule and switching tasks. In Kansas, there was no support available that would have been useful to me. Indeed, by high school I was pretty much beyond needing help, and instead needed challenges. Being labeled disabled, and not being labeled gifted, kept me from these.

Saturday, January 10, 2009

This should be on the list for this year's Ig Nobels

Is there an Annals of Just Plain Silly Research?

From the What Sorts of People blog, here's a lovely article from the Daily Mail (complete with file photo of a temperamental toddler --- 'cause that's what autism is, y'know, all autistics are children and we are always throwing tantrums) describing a study comparing the waist-to-hip ratios of women judged attractive by fathers of autistic children and by other men.

Waist-to-hip ratio (WHR) has come into vogue in evolutionary-psychology circles as some kind of numerical proxy for Ideal Womanhood, being an indicator of higher estrogen levels and (the theory goes) higher fertility and greater ease of childbirth. (And, of course, everything men find attractive in women is firmly rooted in reproductive biology *snort*). Preference for low WHR is also claimed, by these same evolutionary psychologists, to persist across cultures, though Echidne casts some doubt on that:
[T]he 0.7 waist-to-hips ratio was initially established in a study done in the U.S. Its supposed international applicability was based on the fact that some of the students used in the study had roots in various other countries. It's possible that later studies have been done to prove this one, but but Anne Innis Dagg (in "Love of Shopping" Is Not a Gene) reports on several studies on nomadic and semi-nomadic tribes in Tanzania and Peru which found that the men in those tribes preferred women shaped big and tubular, not like an hour-glass, because the former shape was associated with a fatter woman and hence a better worker. Once some of these men got into contact with Western lifestyles their preferences changed. --- This suggests that it is very difficult to disentangle "evolutionary" explanations from the cultural hegemony the Western nations currently have.
Why would anybody expect that to have anything to do with autism? Well, if you recall Simon Baron-Cohen's theory that autism is an extreme case of normal male brain wiring, and thus related to higher levels of testosterone exposure in utero, you might go on to suppose (as Baron-Cohen has done) that autism's persistence in the gene pool results from assortative mating of strongly "systematizing" --- though not necessarily themselves autistic --- types of people. Since he has equated that cognitive style with high testosterone levels, it would make sense in the context of his theory that the women fathers of autistic children are attracted to would show signs of having high testosterone levels (i.e., higher waist-to-hip ratio).

In this study, researchers the men's (52 fathers of autistic children and 65 fathers of NT children) preferences by showing them photographs of five women, each woman's image shown both as is and digitally altered to have a noticeably lower or higher WHR. The men were shown images in pairs and asked which was more attractive. Pairings could include either two different women or two versions of the same woman, differing only in WHR. There was no difference between the two groups of men in which of the five women they rated most attractive, but when comparing the Photoshopped images of any given woman, the fathers of autistic children tended to prefer versions of her with a higher waist-to-hip ratio than did the men in the control group.

They also found, in the course of asking demographic questions to the study participants, that the fathers of autistic children had more sons (the ratio of male children: all children was 0.68 for that group and 0.47 for the control group). That's somewhat interesting, since it takes into account non-autistic children of the same parents, and does suggest there might be something more to the gender imbalance than mere diagnostic invisibility of female autistics. However, this was not an epidemiological study, and a sample of fifty-two families is hardly adequate material for one.

Monday, January 5, 2009

More about Jude the Obscure

Having finished Jude the Obscure not too long ago, I'd like to return to the subject of Sue Bridehead, and what an unusual, confusing character she is.

While she is easy to understand in crude functional terms --- like Arabella, she pulls at one extreme of Jude's mixed nature* --- there's a lot more to her personality than that, and it's this "more" that interests me.

(She seems to have interested Hardy, too: Elizabeth Langland, in her 1980 article in Studies in the Novel, cites a letter Hardy wrote in 1895, a year before Jude was first published, in which he says "Curiously enough, I am more interested in the Sue story than in any I have written.")

While the trait most critics (and, indeed, Sue and Jude themselves) single out is Sue's "inconsistency", I noticed a few other odd ones: asexuality, impulsivity, unconventionality, heightened emotional and aesthetic sensitivity, naivete, total frankness and a weird sense of not-quite-thereness with respect to time and place --- her thoughts, feelings and actions don't quite match her age or social position, and the books she's read seem more central to her identity than her family or place of origin. (Now that I lay them all out like this, they sound a bit familiar, except for the inconsistency and emotional lability).

The critical articles I read about Sue (which were Elizabeth Langland's "A Perspective of One's Own," cited above, and Mary Jacobus's 1975 "Sue the Obscure," published in Essays in Criticism) both explained her unusual qualities as a function of the novel's psychological realism, or lack thereof. (Langland argues that Sue's apparent inconsistency comes from her erratic characterization --- she infers from Hardy's own writings about his creative processes that Sue's role evolved somewhat faster than his ability to pin down her personality --- while Jacobus argues the opposite: that Sue's hypocrisy and vacillation make her appear more believably human as she struggles, and fails, to translate her high-minded principles into the tightly constrained sphere of action). Both invoke the distance between most of the narration (in which Jude's is the primary perspective) and Sue's thoughts and feelings. Jacobus observes that, while we get a little of Sue's perspective early in the novel, recurring infrequently up until the deaths of the children, after that point we hear nothing from her point of view. Her mental breakdown renders her mind inaccessible, both to Jude and to us.

Actually, for a character who's supposedly such a riddle to critics, Sue looked awfully familiar to me (and it wasn't just because I'd fairly recently read Jane Eyre, whose heroine is similarly bookish and unworldly). I found several passages in which I was able to identify with her completely, which you might guess rarely happens. Her emotional transports and childlike glee map fairly easily onto the immanence I experience as part of my sensory hypersensitivity, and her identification with the Venus Urania really speaks to me as a (mostly) asexual who sets a lot of store by intellectual romance. Also, as someone whose most significant (and longest-lasting) "perseveration" was Greek mythology, I was quite pleased when she smuggled the statues of Aphrodite and Apollo into her room at Miss Fontover's house.

Here, Sue relates to Jude how she came by her education:
"You called me a creature of civilization, or something, didn't you?" she said, breaking a silence. "It was very odd you should have done that."
"Well, because it is provokingly wrong. I am a sort of negation of it."
"You are very philosophical. 'A negation' is profound talking."
"Is it? Do I strike you as being learned?" she asked, with a touch of raillery.
"No --- not learned. Only you don't talk quite like a girl --- well, a girl who has had no advantages."
"I have had advantages. I don't know Latin and Greek, though I know the grammars of those tongues. But I know most of the Greek and Latin classics through translations, and other books too. I have read Lemprière, Catullus**, Martial, Juvenal, Lucian, Beaumont and Fletcher, Boccaccio, Scarron, De Brantôme, Sterne, De Foe, Smollett, Fielding, Shakespeare, the Bible, and other such; and found that all interest in the unwholesome parts of those books ended with its mystery."
"You have read more than I," he said with a sigh. "How came you to read some of those queerer ones?"
"Well," she said thoughtfully, "it was by accident. My life has been entirely shaped by what people call a peculiarity in me. I have no fear of men, as such, nor of their books. I have mixed with them --- one or two of them particularly --- almost as one of their own sex. ..." (emphases mine)
The above passage, with its reference to "unwholesome" parts in books that cease to interest Sue once she's able to decipher their innuendoes ("Oh, that's all they were talking about? Yuck!"), hints at Sue's asexuality.

Here are a few more such passages:
"[Other people's] views on the relations of man and woman are limited, as is proved by their expelling me from the school. Their philosophy only recognized relations based on animal desire. The wide field of strong attachment where desire plays, at least, only a secondary part, is ignored by them --- the part of --- who is it? --- Venus Urania."
Then the slim little wife of a husband whose person was disagreeable to her, the ethereal, fine-nerved, sensitive girl, quite unfitted by temperament or instinct to fulfil the conditions of the matrimonial relation with Phillotson, possibly with scarce any man, walked fitfully along, and panted, and brought weariness into her eyes by gazing and worrying hopelessly.
I also have an alternate reading for her inconsistency and vacillation: she doesn't self-censor. Rather than sequestering her decision-making process away in the privacy of her own mind she thinks aloud, particularly to those she deems her friends and intellectual soulmates, like Jude and Phillotson. So she speaks, and acts, on whatever impulse enters her head, and often as not she will decide later (sometimes immediately after the fact) that she did the wrong thing and must go and make amends immediately.

(I share the lack of self-censorship with her, but do not share the flightiness and impulsivity. I am a very slow thinker, and do not ping-pong between options as Sue seems to do so much as shape the choice I will make out of the amorphous goo that in my mind's eye represents what might be).

Sue's disavowal of her gender (which comes up fairly often, as in the first passage I quote where she claims to mix with men as one of them), and of gender itself, is also familiar to me, and comes up with some frequency in the writings of autistic women. For her, androgyny and asexuality are both linked to her intellectual nature --- not because, as D. H. Lawrence saw it, she is an unwomanly woman, a bundle of essentially masculine urges to philosophize, to name things, to interpret, to systematize; all at the expense of the passive, maternal Feminine --- but possibly because she correctly perceives the dangers independent-minded women of her time brave when they choose to be sexual. For most, sex and romance lead to marriage, which in her time still means becoming someone's property. Your movement and social interactions become greatly restricted, lest your morals be questioned. Even if Sue were not, as the novel makes it clear she is, a natural asexual, she would have some very compelling reasons to try to stay celibate anyway.

It seems like the more I read, especially these old-but-not-too-old books, the more I run into these startlingly autistic-like characters. I think the Victorian novel in particular seems to produce a lot of them, if only out of a need for highly idiosyncratic characters to pit against a stifling social order.

*I did find it problematic that, while Jude gets to be fully, messily human, containing both fleshly appetites and spiritual aspirations, each of the female characters is given just one of these aspects of humanity. Madonna/whore dichotomy, anyone?
**A friend of mine who reads Latin tells me Catullus is pretty risqué. I wonder, given the history of later, especially 19th-century, translators of older texts altering, or leaving out entirely, those parts of the originals they found objectionable, whether Sue would have been able to get a reasonably faithful translation of Catullus at all.

Friday, January 2, 2009

Autism-Related News and Miscellany

I found out from ABFH that GRASP's Michael John Carley has been reaching out to Autism Speaks's Alison Tepper Singer. Well, actually I already knew that, being a subscriber to the GRASP newsletter: what was news to me was that the "understanding" promised seems to be only one-way.

Two years after Carley wrote these paragraphs,

It's probably very traumatic for the parent of the severely-affected child to be lectured on the immense potential inherent in the brain and ability of a person on the spectrum. If, when they ask for help, they were to be told no, because their child might have a [Nobel] prize in him, I can imagine fewer injustices that would be larger than that. Wouldn't that seem to insultingly invalidate (sic) all the hardship they were going through?

Wouldn't it also be equally scary for someone on the spectrum who is desperately seeking positive self-images to be lectured by the world that his life will be, or is, awful? (emphasis mine)
the founder of Autism Speaks, Suzanne Wright, wrote a short article for Parade magazine including these lines:
Some may view autism as the disease du jour, the cause of the moment. That trivializes what many are enduring. Families are literally going broke trying to provide their children with the services they deserve. Adults with autism are failing to meet their potential.
We're now playing catch-up as we try to stem the tide and ultimately eradicate autism for the sake of future generations. If we continue our current trajectory, we'll get there in my lifetime. (emphases mine)
Now, in theory I am all for outreach efforts; I think autistic adults are the very people parents of autistic children could most benefit from talking to. But a problem arises when the two sides (and it's to be pointed out that GRASP is hardly an all-inclusive autistic self-advocacy group; ASAN might have been a better choice), rather than meeting in the middle, meet far to one side because only one party is willing to compromise. We've seen how well that works in the past, oh, twelve years of US politics, with the Democrats' steady march to the rightward-creeping "center" while the Republicans stay planted on the far right. It's nasty. All sorts of groups --- women, gays, people of color, poor people, non-Christians, disabled people, transpeople, immigrants --- suffer from a political discourse that shunts them aside in favor of courting rich, white, married Christian men ad nauseam. I don't want that to happen to the autism community, with the interests of nonverbal or multiply disabled autistics thrown aside in favor of a civil accord between "passing" Aspies/HFAers and the cure-autism-now crowd.

In the comments on ABFH's post, I found this post by Socrates rounding up autism-related UK news stories. It wouldn't have been of much interest to me (except for the bit about a new autism prevalence study --- I am quite confused about the actual prevalence, having seen a post at Autism Crisis casting doubt on the more recent figures) if it weren't for the mention of Maxine Aston near the end of the post.

Finally a New Year Quiz:

Who said "Living with an autistic man can give you cancer", was it?

a) Tony Blair
b) Groucho Marx
c) Karl Marx
d) Maxine "would you like to buy a signed copy of my book" Aston.

Curious to see if she really said that, I headed over to her site, specifically the page on Cassandra Affective Deprivation Disorder. (Cassandra disorder is Aston's name for her notion that relationships with one autistic partner and one NT partner subject the NT partner to cruel emotional deprivation, putting the NT partner into a depressive state Aston compares to that of SAD sufferers in winter).

I found she does indeed say that: on the "Healing of Cassandra" page, she lists all the physical and psychological symptoms that she thinks can be blamed on the autistic partner's obtuseness and unintentional cruelty:
Physical Effects
  • Migraines
  • Loss or gain in weight
  • PMT/female related problems (I think PMT might be what we Yanks call PMS?)
  • ME (myalgic encephalomyelitis) (Might be the same as Chronic Fatigue syndrome)
  • Low immune system - colds to cancer
There was also

Mental Health
  • Anger turned to depression
  • Anxiety
  • Phobias - agoraphobia - flying - social
  • Asperger ways
  • Complete breakdown
  • Medication and therapy

The "Mental Health" list reminds me a lot of Edgar Allan Poe's poem "The Raven" --- disproportionate emotional response to random events. We don't read that poem and feel angry at that horrible, heartless Raven who drives the speaker into catatonia; we can see that the speaker is egging himself on, realizing that the bird can only say one word and deliberately asking it questions that stoke his emotional fires. We decide that the speaker must have already been in pretty bad shape before the Raven ever tapped on his door.

None of this, of course, should be taken to minimize anyone's experience of real emotional abuse, but I do not believe merely being autistic and having an NT romantic partner constitutes abuse. Indeed, Aston's own work (reported in her book --- yes, I bought it --- Aspergers in Love) indicates otherwise. She tracked a bunch of mixed autistic/NT couples and found many successful ones, and that the major predictor of success was awareness that the autistic partner was autistic. A clear understanding of one's own, and one's partner's, nature and limitations is always going to make for a healthier, more realistic outlook on the relationship.

When I mentioned this disparity before on ABFH's site, another commenter (Alyric) told me that Aston probably had an editor breathing down her neck when she wrote the book, preventing her from going off into "autism = abuse" territory. Seeing her site, I think that's a reasonable explanation. (I'm going to give my partner cancer? Really? And PMS too? --- That'll be quite a trick, since he's a guy).

That brings me to the other thing that's bugging me about her site: despite mentioning on the Cassandra homepage that both men and women can get the disorder, the entire rest of the site's content proceeds from the assumption that the "Cassandra" is female, and her callous autistic partner is male*. The whole thing frankly reeks of heteronormativity and "Men are from Mars, Women are from Venus"-type essentialism, with the male stereotype in this instance also being pathologized.

*In her book, Aston does talk about autistic women in relationships, though she says the women are much more likely to be in relationships with other autistics than the men. I should research that --- both to confirm it, since Aston is clearly not the most trustworthy, agenda-free source, and to see if I can't find out why --- it could be very interesting to explore that little difference, if it in fact exists, from a feminist perspective.

Thursday, January 1, 2009


In the spirit of taking a bit of a break from the intense turn my posting has taken of late, here's a picture of my cat, Magic: Like her human companion, Magic is quite a reader. That tome she's poring over is a Norton Anthology of English Literature, open to Act I, Scene I of John Webster's The Duchess of Malfi.

Those are her reading glasses, too.