Ari Ne'eman Interviewed at Wired.com

Ari Ne'eman, founding president of the Autistic Self-Advocacy Network and now a member of the National Council on Disability, spoke to Wired.com back in July, and they have now posted the interview on their Wired Science blog.

Here are some excerpts from the interview that I thought were particularly awesome:

Wired.com: Many Wired readers work in the tech and software industries. How could they help improve the lives of autistic people?

Ne'eman: If we put one-tenth of the money currently spent on looking for causes and cures into developing technologies that enable autistic people with speech challenges to communicate more easily --- so-called augmentative and alternative communication [AAC] --- we'd have a vast improvement in the quality of life for autistic people and their family members.

We've already seen some very promising tools for AAC and other assistive technologies start proliferating on the iPad and the iPhone. But Medicaid won't pay for such dual-use devices, despite the fact that having an AAC app running on an iPad may be much cheaper and more functional than carrying around a dedicated AAC device. That should change, because AAC devices are currently too expensive and often not versatile enough to be used in a diverse set of circumstances.

Second, I'd love to see research into ways of using social media to improve access for disabled people. If there was some kind of web-based tool or mobile app that enables people to flag buildings with "very good" or "very bad" access, it could spur a lot of positive social change.

Finally, there should be websites or apps that enable disabled people to rate their service providers and record their experiences, like the websites that already exist for college students to rate their professors. The internet has proven to be very important for autistic people, because it's given us a chance to connect with each other and start to form a culture of our own. We've barely begun to tap the potential of handheld networked devices to assist with the kinds of deficits in executive functioning and life skills that many of us on the spectrum face. Mobile devices and apps could be very helpful in improving prospects for employment and education across the whole life span of autistic people --- not just when we're kids.

I love Ari's ideas about assistive technologies --- I would never have thought of using an iPad or iPhone as an AAC device*, but now that he suggests it, I can imagine it working well for that. I'm also enthusiastic about the web-based accessibility- and caregiver-rating. The accessibility-rating for places could speed up the currently-very-slow process of getting city governments to respond to people's complaints about poor accessibility through the Internet's ability to gather a critical mass of people calling for a given thing much more quickly than traditional, localized grassroots organizing. (Darned if I know how mobile devices and apps could help with education and employment, though, apart from their utility as AAC devices that he already mentioned).

(I can pretty easily imagine why Medicaid officials --- assuming they know about AAC apps for iPad/iPhone, which maybe they don't --- would be loath to use Medicaid funds to cover those things, even if they are cheaper and more practical: can you imagine the scandal if some deficit hawk in Congress were to discover Medicaid funds being used to provide iPhones to poor people with disabilities? The horror!)

More Ari:

Wired.com: Some of your critics suggest that as a "high-functioning" person with Asperger's syndrome, you present an overly rosy picture of life on the spectrum. You work in D.C., do a lot of public speaking and networking, and are obviously capable of things that someone who lives in a wheelchair or can't speak cannot do.

Ne'eman: I know quite a few people in D.C. who use wheelchairs, and I know people who use AAC devices and work in public policy. Some of my mentors fall into those categories. So while I'd agree that there are many things I do that some other autistic people can't, I wouldn't say that it's the fact that I'm not a wheelchair user or an AAC user that makes that the case.

I recognize that I'm fortunate in many respects and am able to do things that some other autistic people can't do. But I would also point out that these things didn't --- and don't now --- come easily to me. I've been fortunate to be able to count on the inclusive culture of the broader disability-rights movement to help support me.

There's a strange idea out there that neurodiversity advocates think that autistic life is all flowers and rainbows, but I don't know anyone who thinks that way. Most of us have had deeply personal experiences with social isolation, bullying and abuse, lack of support, discrimination, and plenty of other problems. But it's much more productive for us to focus on how we can improve people's lives than to keep presenting people as pitiable burdens.

No more pity. It doesn't help anybody.

Many of the bad things that autistic people struggle with are things that happen to us, rather than things that are bad about being autistic. Why is that an important distinction? I remember reading a blog post from a parent who pointed to two news stories. One was about a mother who had murdered her autistic child because she couldn't deal with the fact that he wasn't normal, and the other was about a school aide who had abused a child. And the blogger said, "This is what autism is like. That's why we need to find a cure."

I find that kind of thinking despicable: One would think the fault there isn't with autism, but with abusers and murderers! As long as we confuse bad things that happen to autistic people with what it means to be autistic, we're not going to be solving the problems that autistic people face in any meaningful way.
...
Wired.com: Though you criticize groups like Autism Speaks for focusing on a cure, if someone offered you a pill to wake up tomorrow without autism, would you take it?

Ne'eman: That's an intensely silly question. How can I draw a line around one part of my brain and say this is the autistic part, and the rest of me is something else? That way of looking at autism is predicated on the strange idea that there was or is a normal person somewhere inside me, hidden by autism, and struggling to get out. That's not reality.

As a society, our approach to autism is still primarily: "How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?" The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need.

Lovaas also experimented with trying to make what he called effeminate boys normal. It was a silly idea around homosexuality, and it's a silly idea around autism. What if we asked instead, "How can we increase the quality of life for autistic people?" We wouldn't lose anything by that paradigm shift. We'd still be searching for ways to help autistic people communicate, stop dangerous and self-injurious behaviors, and make it easier for autistic people to have friends.

But the current bias in treatment --- which measures progress by how non-autistic a person looks --- would be taken away. Instead of trying to make autistic people normal, society should be asking us what we need to be happy.

*Partly because I can speak, and thus don't need to spend a lot of time pondering AAC, but mostly because I am kind of a technophobe and don't use a mobile computer; I don't always grasp everything they're capable of doing.

These Are Not the Eternal Verities of Biology - Part II

I wrote this post almost a year ago, but it's always been my plan to add to it. And now Echidne (who is, among other things, a tireless debunker of gender-essentialist pop evolutionary psychology) has inspired me to come back to this topic.

She describes a recent study in Evolution and Human Behavior (full text here) by Jaime C. Confer, Carin Perilloux and David Buss that tried to characterize how men and women choose short-term or long-term sexual partners.

Briefly, what the study did was sit 192 straight male and 183 straight female (the six --- only six?! --- would-be participants who said they were gay were screened out) college students down and show them a (clothed) picture of a member of the opposite sex, whom they were supposed to evaluate as a potential sex partner. (Half of them were told to consider the person as a short-term partner; the other half were told to think long-term). The picture was initially covered up, with one box covering the face* and another covering the body; study participants were given a choice which box to remove.

When evaluating the pictured person as a potential long-term sexual partner, the sexes behaved almost identically: sixty-eight of the men (75%) and sixty of the women (73%) chose to look at the person's face. The sexes also showed a similar change in strategy between long- and short-term conditions: both looked at the face more when they were asked to evaluate a potential long-term partner, and both looked at the body more when asked to evaluate a potential short-term partner. For the men, though, the change in strategy was much more dramatic: they went from three-quarters of them choosing the face in one set of circumstances to half and half in the other (roughly speaking); for the women, it was a much smaller decline, from (a little less than) three-quarters to two-thirds. The men's change, but not the women's, was considered statistically significant.

That's not the narrative Confer, Perilloux and Buss use to describe their findings, though: rather predictably, they see a marked sexual dimorphism in mate-choosing strategies, reflecting deeply ingrained male preferences for fertile mates (i.e., younger women with neotenous, "hyperfeminine" facial features as long-term partners, but also obviously sexually mature, fertile women with low waist-to-hip ratios as short-term partners) and an equally ingrained lack of female preferences for youth or bodily beauty in her partners.

The study, its findings, and the way its authors chose to present those findings are not what I really want to look at in this entry, though. (Echidne has already covered those angles really well). No, what I want to look at is the imaginary scenario the study's authors set up for its participants: what they were asked to do, essentially, is evaluate a third (absent) person's suitability as a sexual partner based on one quick look.

It came up in the comments at Echidne's blog, and I agreed wholeheartedly, that this scenario resembles today's anonymous, superficial meat-market dating scene a lot more than it does the likely pattern of courting and mating behaviors that early humans would've shown. Early humans, like other primates and modern-day humans still living a hunting-and-gathering lifestyle, lived in small, close-knit bands, where you would probably have known the people you ended up having sex with for quite a long time before you had sex with them. Accordingly, things like waist-hip ratio, facial symmetry and whatnot would've been less important than, say, each partner's social and family ties (i.e., does she have sisters, aunts or a mother who would help out with childcare? Do these aforementioned relatives *like* the prospective mate? What about his relatives? How does he get along with the other men in the tribe? Is he a social asset or liability?) or lack thereof.

This is another of the weird things I've noticed about much of evolutionary psychology --- it seems to be less a historical science (like paleontology or archaeology) and more an extended thought-experiment in What Human Nature Would Be Like If It Weren't for All This Pesky Civilization Crap. The ev-psych model for heterosexual relationships seems to assume that the man and the woman are both relatively isolated: the woman depends solely on the man for support, for herself and her children; the man, while he is not correspondingly dependent on the woman, and is thought to be impregnating --- or trying to impregnate --- other women whenever the opportunity arises, his relations to other men resemble the Hobbesian state of "war of all against all." (Similarly, other women are invisible unless and until the man in the thought-experiment has sex with them).

This highly individualized, atomistic way of thinking about people is actually very new in the history of ideas, and notably it does not compute to modern-day people who actually live in extended-family communities.

*This experimental setup apparently poses a temptation for commentators to make "butterface" jokes. I am trying to resist this.

Andrea Dworkin on Female Rebellion

In her book Intercourse, Andrea Dworkin includes a chapter on female virginity, citing Joan of Arc and the two female saints who inspired her as examples of celibate women refusing to live the narrow, cramped lives to which their societies consigned them. For these women, their virgin state was both a practical strategy (since it's easier to risk your life when you have no children who depend on you, and no husband whose property you legally are) and a defiant gesture in itself:

The Church that killed [Joan of Arc] may now identify her as a martyr; but for women inspired by her legend, she is a martial hero luminous with genius and courage, an emblem of possibility and potentiality consistently forbidden, obliterated, or denied by the rigid tyranny of sex-role imperatives or the outright humiliation of second-class citizenship. Women have many martyrs, many valiant pacifists, sung and unsung; few heroes who made war. We know how to die, also how not to kill; Joan inexplicably knew how to make war. At her trial, Joan insisted that she had never killed on the battlefield, improbable since the combat was hand-to-hand; but she was known among her own men for standing against the commonplace practices of sadism on the battlefield. It is hard to believe that she did not kill; but whether she did or did not, she was an exemplary martial liberator -- nearly unique in the iconography and history of the European female, that tamed and incomprehensibly peaceful creature. Joan's story is not female until the end, when she died, like nine million other women, in flames, condemned by the Inquisition for witchcraft, heresy, and sorcery. Precisely because she was a hero whose biography brazenly and without precedent violates the constraints of being female until the terrible suffering of her death, her story, valorous and tragic, is political, not magical; mythic because she existed, was real, not because her persona has been enlarged over the centuries. Her virginity was not an expression of some aspect of her femininity or her preciousness as a woman, despite the existence of a cultish worship of virginity as a feminine ideal. She was known as Joan the Maid or, simply, The Maid ("La Pucelle"). Her reputation, her declaration, preceded her, established her intention and her terms; not in the context of being a holy or ideal female but in the context of waging war. Her virginity was a self-conscious and militant repudiation of the common lot of the female with its intrinsic low status, which, then as now, appeared to have something to do with being fucked. Joan wanted to be virtuous in the old sense, before the Christians got hold of it: virtuous meant brave, valiant. She incarnated virtue in its original meaning: strength or manliness. Her virginity was an essential element of her virility, her autonomy, her rebellious and intransigent self-definition. Virginity was freedom from the real meaning of being female; it was not just another style of being female. Being female meant tiny boundaries and degraded possibilities; social inferiority and sexual subordination; surrender to male force or violence; sexual accessibility to men or withdrawal from the world; and civil insignificance. Unlike the feminine virgins who accepted the social subordination while exempting themselves from the sex on which it was premised, Joan rejected the status and the sex as one thing -- empirical synonyms: low civil status and being fucked as indistinguishable one from the other. She refused to be fucked and she refused civil insignificance: and it was one refusal; a rejection of the social meaning of being female in its entirety, no part of the feminine exempted and saved. Her virginity was a radical renunciation of a civil worthlessness rooted in real sexual practice. She refused to be female. As she put it at her trial [a full transcript of which is available online here - Lindsay], not nicely: "And as for womanly duties. She said there were enough other women to do them."

...

We have role models; Joan had voices. Her voices were always accompanied by a radiance, illumination, an expanse of light. She saw angels and was visited by saints. Her two special voices, guides and consolation, were St. Catherine of Alexandria and St. Margaret of Antioch. While many of the elaborations on their legends show the iconoclastic individuality of the two saints, the main outlines of their lives -- the substance of their heroism -- were virtually identical. Both were desired by powerful men (heads of state), turned them down, were tortured and decapitated. Both were in mortal combat with male power, were militant in their opposition to it, did not capitulate, and were killed for resisting. Both were virgins.

St. Catherine was the patron saint of unmarried girls and also of philosophers and students. She was famous for her erudition, one of the rare and great women of learning. Her father, a king, wanted her to be married but she kept turning down suitors. One night she dreamed that Mary, holding Jesus, asked her if she wanted to be his bride. She said yes, but Jesus turned her down because she was not a Christian. She got baptized; that night Jesus, surrounded by angels and saints, put a wedding ring on her hand. When the Emperor Maxentius ordered all the Christians in Alexandria killed, Catherine went to him to argue for her faith. The Emperor made her debate fifty learned men, skilled orators; she won each debate and the fifty men were burned. The Emperor wanted Catherine for his mistress and promised that her image would be worshipped everywhere if only she would make a sacrifice to the gods. She refused, for Jesus and her faith. The Emperor threw her into prison and she was terribly tortured. The Catherine wheel, an instrument of torture, was invented for the purpose of eviscerating and killing her; but an angel destroyed the wheel. Catherine was killed by decapitation.

St. Margaret was the patron saint of peasants and women in childbirth, the latter not because she had children but because she was swallowed by the devil in the form of a dragon, and her purity and resistance were so great that he had to spew her up again whole and unhurt. Viewed as someone miraculously reborn uninjured, she became a symbol of hope in the life-and-death agony of childbirth. Margaret's father was a pagan priest, but she was secretly baptized. She tended animals in the fields. The governor, Olybrius, saw her, wanted her, and had her brought to him. She refused him and declared her faith. She was imprisoned, flogged, and terribly tortured. In prison she was swallowed by the dragon; and when she triumphed over the dragon, the devil confronted her again, this time in the form of a sympathetic man who told her that she had suffered too much:

But she seized his hair, hurled him to the ground, and placing her foot on his head, exclaimed:
"Tremble, great enemy. You now lie under the foot of a woman."

She was burned, torches applied to various parts of her body, but she acted as though she felt no pain. She was killed by decapitation.

The legends of both saints were well known in Joan's time and environment, common stories for everyone, not arcane anecdotes for the educated. The narrative details were so familiar that an evil and stupid person was even referred to, in the common parlance, as an "Olybrius." Women were named after these saints and celebrated name days. These saints were figures of mass adoration in stories of adventure, romance, and heroism. There was an elaborate and epic imagery in the churches to communicate visually the drama and scale of their bravery and martyrdom. The artifacts and paintings in the churches told the stories of the saints and their heroism and suffering in dramatic, graphic pictures; a bold, articulate, mesmerizing iconography not rivaled for effect until the invention of the wide screen in cinema. St. Catherine was pictured with the wheel named for her, St. Margaret with a dragon, both with swords. They were shown with swords because they had been decapitated, but the abridgement of the narrative into a martial image conveyed militance, not just martyrdom. Each faced what amounted to a state-waged war against her person: the whole power of the state -- military, physical, sadistic -- arrayed against her will and her resistance and the limits of a body fragile because human. This goes beyond the timorous ambition of today: a woman fights off a rapist. Each of these women fought off a rapist who used the apparatus of the state -- prison and torture -- to destroy her as if she were an enemy nation. Each refused the male appropriation of her body for sex, the right to which is a basic premise of male domination; each refused a man in whom male power and state power were united, a prototype for male power over women; and each viewed the integrity of her physical body as synonymous with the purity of her faith, her purpose, her self-determination, her honor. This was not a puerile virginity defined by fear or effeminacy. This was a rebel virginity harmonious with the deepest values of resistance to any political despotism.

Joan identified deeply with these women ... [s]he learned from them the way a genius learns: she did not repeat them in form or in content; she invented new form, new content, a revolutionary resistance. Joan did not die because men desired her; but because she refused the status, including the outward trappings (female clothing), of one who could be so desired at all. Virginity was one dimension of her overall strategy, one aspect of her rebellion; and, interestingly, her refusal to have sex with a man was not a dogmatic or ideological one. As Marina Warner points out in her book on Joan, the name Joan called herself and by which she was widely known, La Pucelle, "denotes a time of passage, not a permanent condition." Her own testimony at her trial seems to confirm this nuance:

Asked whether it had been revealed to her that if she lost her virginity she would lose her good fortune, and that her voices would come no more to her.
She said: That has not been revealed to me.
Asked whether she believes that if she were married the voices would come to her,
She answered: I do not know, and I wait upon Our Lord.

Had Joan simply learned a Church precept by rote or had she wanted to conform to a theological code of sexual purity, she would have held virginity to be a sacred state of being, one that would ennoble her for the duration of her life, a passive state intrinsically holy and magical with God's blessings. In her society, virginity was "an ideal wreathed in the finest poetry and exalted in beautiful Latin hymns and conventual chants." It was a common belief cited as fact by Church authorities with whom she came into contact that "God had revealed to virgins ... that which He had kept hidden from men." Instead for Joan -- and Catherine and Margaret -- virginity was an active element of self-determined integrity, an existential independence, affirmed in choice and faith from minute to minute; not a retreat from life but an active engagement with it; dangerous and confrontational because it repudiated rather than endorsed male power over women. For all three women, virginity was "a passage, not a permanent condition," the precondition for a precocious, tragic passage to death. As rebellion, virginity amounted to a capital crime. No woman, however, had ever rebelled the way Joan of Arc, virgin, rebelled.

Later in the chapter, Dworkin contrasts Joan's rebellion with the rebellion of a much later --- and fictional --- French heroine, this one created by a male novelist:

[Gustave Flaubert] wrote what a current paperback edition of his masterwork hails as "the greatest portrait ever written of a woman's soul in revolt against conventional society." The book is not about Joan of Arc. It is, instead and on the contrary, about Emma Bovary, a petite bourgeois whose great act of rebellion is to commit adultery. With this woman, called "my little lady" by her creator, the modern era begins: the era of the petite bourgeoisie seeking freedom. Female freedom is defined strictly in terms of committing forbidden sexual acts. Female heroism is in getting fucked and wanting it. Female equality means that one experiences real sexual passion -- driven to it, not faking. There is an equation between appetite and freedom, especially promiscuity (as one form of appetite) and freedom. A romantic distinctly not in the traveling, lyric tradition of Shelley or Byron, indeed, a female romantic with lightness in the head and fragmented fantasies feverish on the brain, "she had a cult for Mary Stuart and enthusiastic veneration for illustrious or unhappy women ... who stood out to her like comets in the dark immensity of heaven ..." For Emma, Joan was such a comet, a figure of fantasy, in the ether, not ever having lived on earth in the framework of real human possibility. Emma's mind, murky with religious and romantic fantasy, wanted "the rare ideal of pale lives, never attained by mediocre hearts." In her sentimentality, "she loved the sick lamb, the sacred heart pierced with sharp arrows, or the poor Jesus sinking beneath the cross he carries"; and in her effete impotence, "[s]he tried, by way of mortification, to eat nothing for a whole day. She puzzled her head to find some vow to fulfill." Alternately agitated and bored, having a mind filled with fantasies rather than ideas or possibilities, having no purpose or commitment, having no action, no vocation, only the boring chores and obligations of domesticity; too self-involved to find either passion or emotion in commonplace human relations, including motherhood, she is incapable -- to use the language of Iris Murdoch -- of moral or artistic excellence, defeated because she is immersed in personal fantasy, "the chief enemy of excellence," "the tissue of self-aggrandizing and consoling wishes and dreams which prevents one from seeing what is outside one." ...

Preoccupied with fantasy, Emma does not see or experience the world outside herself except as a deprivation of attention from her inner fog, and so she remains essentially untouched -- by the husband who fucks her and by human possibility in the wider world of real events. Virginity is redefined through her, given a modern meaning: a woman untouched is a woman who has not yet felt sexual desire enough to be made sick by it, experienced sexual passion enough to crave it, and broken rules in order to be carnal; a woman fucked by her husband but feeling nothing, or not enough, no lust, no romance, no brilliance of sensation, is still a woman untouched. This new virginity of body and soul survives marriage, and marriage itself generates new, incoherent fantasies of romantic or sexual grandeur: "Domestic mediocrity drove her to lewd fancies, marriage tenderness to adulterous desires." There is no freedom, no heroism, no ambition, no equality, outside the domain of sex experienced as carnal passion and also as the breaking of a rule. Danger is in the extremity of feeling and the risk of flouting convention; and the danger verifies the authenticity of the event, hidden from history yet having the significance of a male act of freedom inside history. The large, brave world of Joan becomes the tiny, suffocating world of Emma: and in it we still live. The old virginity -- with its real potential for freedom and self-determination -- is transformed into the new virginity -- listless, dissatisfied ennui until awakened by the adventure of male sexual domination: combat on the world's tiniest battlefield. It took Freud to call the refusal to fight on that little battlefield "repression" and to name the ambition to fight on the large one "penis envy." The cell door closed behind us, and the key turned in the lock.

Wow, A Blog Award!

Clay and Corina have both decided to give me the Versatile Blogger Award. Thank you, to both of you. You are both good writers, and you both handle such a broad range of subjects so well, it's an honor to be chosen by you.

Anyway, this award, like so many others, comes with a meme: now that I have it, I have to share seven things about myself and then pass the award on to seven other bloggers I like (and, presumably, think are versatile).

Seven weird, random fun facts about me:

1. If you follow pop psychology at all (and I do --- we all need something to snicker at), you'll have heard something about digit ratio; if the ring finger is longer than the index finger, it means you're more masculine. Simon Baron-Cohen has also tried to tie digit ratios to autism, as per his theory that autism = hypermasculinity.

Being a big, butch, queer autistic woman, I naturally wanted to see if I displayed the expected masculine pattern of finger lengths, so I measured mine --- all the while taking it about as seriously as a newspaper horoscope or a fortune cookie, mind --- and found that each of my hands has a different digit ratio. On the left hand, the ring finger is longer than the index finger; on the right, they're the same length.

2. I have enormous trouble telling right from left. At *best*, I have to hold up my hands in an "L" shape and see which one makes the "L" point the right direction to determine right from left; at worst, I forget which way an "L" is supposed to point so I just pick one at random.

This runs in my family; my grandmother and sister are like that too. (My grandmother would always get teased at work about "Polish lefts").

3. I've flown an airplane! A Cessna 172. It was one of those introductory flying lessons, where the instructor helps you do the pre-flight checks and sits next to you while you take off and fly around, then takes over when it's time to land.

4. I love M&Ms, but have "rules" for eating them. I eat them in groups of 3, 5 or 6, either all the same color or one of each color. (If its groups of three different-colored ones, lately I've been only eating primary colors. Other colors I just eat in single-color handfuls).

5. When I was a kid, I was terrified of bees and wasps. Like, if I saw one I would freeze up and have to go inside RIGHT AWAY. I am still jumpy around wasps, as they seem to be less predictable than bees.

6. All Gatorade tastes green to me.

7. My oldest T-shirt, which has a design of a cow skull on the front, a bald eagle carrying off a diamondback rattlesnake on the back, with red, blue and black tie-dye on the sleeves and sides, dates from when I was 8 years old. This is impressive when you consider how large I am now --- I bought begged my mom to buy the shirt not in the size I wore then, but in a bigger size I could grow into. That bigger size was a men's large; as a kid I had the notion I would grow up to be as big as my father. (Yes, I knew I was a girl, and knew I would not grow up to be a man. I still thought I would grow up to be just like my father, only female).

So, now, seven people I think are versatile bloggers!

Urocyon
Amanda Baggs (probably a bit hubristic for me to name her, since her writing helped make up the foundation of online neurodiversity, but she practically defines "versatile blogger," so I'd feel weird not naming her)
Clarissa
Astrid
Daisy

... and two more who don't seem to be writing for the general public anymore, but who are both terrific writers who tackle a broad array of topics with aplomb: Anemone Cerridwen and Kowalski.

Post #200!

Right now, this is the 200th post on this blog, though that will probably change once I finish up some very old posts in the draft queue --- some of which I'll want to keep backdated so that they will appear in chronological order as part of a series.

There's also another milestone I passed recently: this blog is now a little over three years old.

Two hundred posts over three years means I average about a post a week, with two every third week. Given how long it's taken me to write posts lately, that sounds incredible.

Through a (Brain) Scanner, Darkly

EXECUTIVE SUMMARY: In the August 11 issue of the Journal of Neuroscience, Christine Ecker and her colleagues at the Institute of Psychiatry at King's College in London describe a new tool they've developed for finding differences between autistic and non-autistic brains that go beyond "x brain structure is bigger/smaller in autistic people"; their method takes into account overall patterns of gray matter structure and organization. Their tool not only identifies these subtle, pervasive differences, it also "learns" them, using them to classify individual (computer models of) brains as autistic or not-autistic. The tool works quite well for that kind of classification, doing significantly better than chance on almost all its individual components, and reaching 65 to 85 percent accuracy as a whole. It can also distinguish between autistic brains and some other kind of non-neurotypical brain, in this case ADHD.
___________________________________

(Still image from the TV show "Dollhouse")

Apart from this brief mention on Amanda's blog, I hadn't read anything at the time about the new multidimensional brain scan described last month in the Journal of Neuroscience. I was intrigued, because one thing that's been awfully elusive to autism researchers is a consistent, reproducible biological marker that's specific to autism.

There've been some hints of neuroanatomical differences between autistic and non-autistic people in previous studies, but those differences --- in, say, the size and activity of the amygdala, the size and shape of the hippocampus, the size of the cerebellar vermis, the distribution of gray matter and white matter, the density of certain cell types within the cerebellum, the thickness of the cerebral cortex, or even in the overall size of the brain --- don't always show up when researchers look for them, nor do they always show up in every member of the (very small, carefully selected and usually quite homogeneous) group of autistic people being studied.

The authors of the recent study --- Christine Ecker, Andre Marquand, Janaina Mourão-Miranda, Patrick Johnston, Eileen M. Daly, Michael J. Brammer, Stefanos Maltezos, Clodagh M. Murphy, Dene Robertson, Steven C. Williams and Declan G. M. Murphy --- suspect that there might be a broader, more pervasive pattern of altered brain structure that underlies all the different, highly variable, changes to individual structures within the brain that are sometimes seen in autism:

[R]eports of region-specific differences in ASD are highly variable [for review, see Toal et al. (2005) and Amaral et al. (2008)]. Such variable findings may simply be explained by confounds such as clinical heterogeneity between studies, or analytical techniques. Alternatively, variability in findings may indicate that differences in brain anatomy in ASD are relatively subtle and spatially distributed, and are difficult to detect using mass-univariate (i.e., voxelwise) approaches. Last, given the multiple etiology of ASD, it is likely that its neuroanatomy is not confined to a single morphological parameter but affects multiple cortical features.

To try to find out what kinds of subtle, structural differences might characterize the brains of autistic adults, the researchers scanned the brains of twenty autistic men*, twenty men without any psychiatric, neurological or developmental disorders, and nineteen men without autism but with ADHD (to provide a non-autism, but also non-neurotypical, control group to try and isolate neuroanatomical variations particular to the autism group), used the MRI data to create three-dimensional computer maps of each subject's brain, and then fed the values of five different measurements taken at each vertex of the computer model (which is made of tiny triangular facets meant to approximate the brain's curved surfaces) into a statistical-analysis algorithm called a Support Vector Machine, which Neuroskeptic describes much better than I could in this post.

The five things they measured at each vertex of their virtual mock-brains are as follows: average convexity/concavity of the cortical surface (i.e., the distance between the cortical surface at a given vertex and where the cortical surface would be if the brain were smooth); cortical thickness; mean (radial) curvature (i.e., the radius of the circle that could be drawn underneath the curve of the cortical surface); metric distortion or Jacobian, which is the ratio of the areas of the triangular facets making up the cortical surface and the gray/white matter interface; and the pial area, which is the average area of the triangular facets touching each vertex.

Since some of these things are very hard to visualize, here's a diagram:

Figure 1, in Ecker et al. (2010)

Overall, this five-parameter model works pretty well at predicting who is autistic** and who isn't, though I was surprised to see how much its accuracy differed from one side of the brain to the other. On all measures, there's a huge gap --- a gap of 20 percentage points or more, in all but one instance --- between the two brain hemispheres in terms of a given measure's accuracy (i.e., its ability to sort all subjects into the correct category), sensitivity (ability to correctly identify autistic subjects --- i.e., having a high number of true positives and a low number of false negatives) and specificity (ability to correctly identify non-autistic subjects --- i.e., having a high number of true negatives and a low number of false positives).

For whatever reason, the left hemisphere much more than the right showed consistent neuroanatomical differences between autistic and non-autistic subjects.

Here's a classification plot showing the two categories as determined by applying the five-variable classifier to the left hemisphere:
Here, all but two autistic subjects are placed into the positive (i.e., autistic) category, and all but four control subjects are correctly placed into the negative category.

Contrast that with the right-brain results ---

--- where you see a lot more crossover between categories, plus several subjects straddling the border line. It is also only in the left hemisphere that any correlation is observed between how far to the right of the dividing line a person is and their ADI scores in the social and communication domains.

Some parameters also performed better than others: cortical thickness had the highest accuracy levels of any parameter (90% in the left hemisphere!), followed by metric distortion.

Finally, in the left hemisphere the model also succeeded in distinguishing ADHD subjects from autistic ones. (In the right hemisphere, it placed about equal numbers of ADHD subjects in each category). That's important because it shows that the model is actually picking up on characteristics of autistic brains, instead of just registering all deviance from "normal."

So, what *ARE* these characteristics of autistic brains? Well, they vary by region --- not only in terms of which parameter is relevant, but also in terms of how autistic people differ from neurotypicals on a given parameter.

For instance, if you look at this map of how the autistic subjects' brains differed from the controls in terms of cortical thickness, you can see that some parts of the brain (mostly on the temporal lobe) tend to have a thicker layer of gray matter in autistic people, while in other areas (mostly on the frontal and parietal lobes), the cortex tends to be thinner in autistic people.

Figure 4 (A), in Ecker et al. (2010); red areas represent more gray matter in relation to average non-autistic brain, blue areas represent less gray matter.

Some of the areas that showed up as having an "excess" of gray matter surprised me, as differential activity in those areas (fusiform gyrus, superior temporal sulcus) had previously been theorized to underlie autistic "deficits" in making sense of faces.

Besides these differences in amount of gray matter, there were also some strong differences in gray matter geometry: first, the autistic subjects showed greater sulcal depth in two regions --- the intraparietal sulcus and the superior frontal cortex --- and second, the inferior parietal lobes and certain regions in the right frontal lobe --- the right supramarginal gyrus, postcentral gyrus, and orbitofrontal cortex --- along with the precuneus, showed different patterns of cortical folding.

For example, here's the right intraparietal sulcus:

From Figure 5 (B), in Ecker et al. (2010)

The blue line represents the cortical surface for the average control subject; the red line represents the average autistic subject's cortex. You can see that the sulcus goes down deeper in the autistic subjects, and also that the gyri on either side are a bit steeper.

I would like to point out, again, that it's not necessarily any single variation at any one region of the brain that this statistical analysis has tied to autism, though --- it's a pattern of gray-matter distribution. It's also a pattern that's so far only been observed in a tiny, rather homogeneous sample of autistic men --- much larger, broader-based studies of this classifier need to be done to see if the same patterns hold up for all of the people currently lumped together under the category "autistic," or whether separate neuroanatomical phenotypes will define autistic subtypes.

I would also like to see future studies done using different diagnostic tools to define the autistic group --- if the goal of this research is to establish a biomarker for autism diagnosis so that we can finally be done with frustratingly ambiguous diagnosing-from-behavior, it will hardly do to have the biomarker be dependent on one of the older behavioral diagnostic tools for its template!

*According to this table showing demographic data on the autistic and control (but not the ADHD) subjects, the autistic subjects were mostly young, and some middle-aged, men (the average age (33) was much closer to the age of the youngest person (20) than it was to that of the oldest person (69)) and had a very wide range of IQ scores as measured by the Weschler Abbreviated Scale of Intelligence. The standard deviation, for full-scale IQ and for verbal and performance IQ, was around 20 points for the autistic group, and scores ranged from 76 (just one point over the cutoff point the authors chose to designate intellectual disability, which is a full-scale IQ of 75) to 141, with verbal IQs ranging from 78 to 133 and performance IQs from 77 to 138. These subjects, I'd like to point out in the spirit of adding to Michelle Dawson's recent post on functioning levels, were all defined as having Asperger's or high-functioning autism.

**Autistic subjects were determined to be such using either the ADI-R (for fifteen subjects), the ADOS (for five) or both (two).

Ecker C, Marquand A, Mourão-Miranda J, Johnston P, Daly EM, Brammer MJ, Maltezos S, Murphy CM, Robertson D, Williams SC, & Murphy DG (2010). Describing the brain in autism in five dimensions--magnetic resonance imaging-assisted diagnosis of autism spectrum disorder using a multiparameter classification approach. The Journal of neuroscience : the official journal of the Society for Neuroscience, 30 (32), 10612-23 PMID: 20702694

Link Roundup: Fat Is a Feminist Issue Edition

Within the last week or so, there's been a spate of really good feminist blogging about intersections between feminism and fat acceptance.

From Feministe, three guest posts: one by Atheling, who blogs at This Wicked Day, about similarities between slut-shaming and fat-shaming; one by zuzu, who used to be a Feministe contributor and now writes mostly at her own blog, Kindly Póg Mo Thóin, that deals with how fat-shaming health alarmism actually harms fat people's health, both by keeping them out of doctors' offices and by leading doctors to look no further than their patients' BMIs to explain their various health problems; and one by Spilt Milk (who writes an eponymous blog) about how body-shaming permeates mother-daughter relationships and how fat acceptance is radical because it's based on kindness and, well, acceptance, first of yourself and then of others.

There's also this terrific post by Meowser at Fat Fu, which contrasts the reasonable things fat-acceptance advocates are actually saying with the raving denialism everyone else seems to hear:

We say, "Weight is, for the most part, not a very good proxy for health, and there are much better ones, like socioeconomic status." They hear, "Being dozens of pounds over (or under) your baseline weight is just ginchy for you, and your doctor should never bring it up ever." ...

We say, "What causes people to weigh what they do is complex and multifactorial, and varies a lot from one person to another - and you can't tell what people's habits are from their pants size." They hear, "Weight is purely inherited and has nothing whatsoever to do with behavior." ...
...
We say, "Hounding kids about their weight is not likely to result in happier or healthier kids OR adults, for the most part." They hear, "We don't care if all the children lose their toes to dry gangrene by the time they're 12, as long as we can eat all the baby-flavored donuts we want."

Finally, there's this post by Aunt B at Tiny Cat Pants. She talks about two important things that often go unacknowledged in discussions about fat, public health and how U.S. society has changed: first, the class aspects of sitting around waxing oracular about why Those People are so fat and what they must be doing wrong ...

... [W]e talk about obese people having no self-control or being too stupid to know what to put in their bodies or lacking access to experts who could tell them what to do with themselves; the narrative is all about how obese people put all kinds of things in their bodies because they're too stupid (or uneducated to know better) and they thus have really negative life outcomes. Now, read that same sentence and swap out "obese" for "poor."

It works just the same.

I find that interesting. In both cases, it's about a group that has too many people in it, who need education and expertise and guidance, and who are deemed failures or troublemakers if they resist efforts from the outside to improve them.

The word "class" doesn't quite fit, but I think it has to do with demanding people want to strive to remove evidence of what has been deemed their shitty circumstances. Yes, of course, you will be punished for striving. But you will be punished worse for not striving.

It's almost as if the obese/the poor, by their very existence, insult their "betters" by not recognizing and properly responding to their "betters'" expertise on how best to live life.

... and, later, about implicit sexism in how most people --- even most feminists --- talk about fat:

Is it really not clear to feminists how the "obesity epidemic" is about reasserting the right to police women's bodies? Except now, we're doing it for your health!When people talk wistfully about how "nobody cooks at home anymore" who do you think that "nobody" used to be? When people talk about how kids don't get the same free rein of the neighborhoods they used to have, who is the unspoken monitor of all that free time?

Who has, supposedly, fallen down on the job causing us all to be fat?

Spilt Milk also addresses the mother-blaming aspect of obesity panic in her post --- she describes the double bind mothers find themselves in where, if a daughter develops an eating disorder, it's the mother's fault for being too uptight about food and teaching the daughter to hate her body, while, at the same time, if the children are fat, the mother is blamed for being too lazy to cook healthy food and make sure her children get enough exercise!

EDIT: Radical feminist blogger The Bearded Lady has also written two recent posts on fat acceptance: one --- like zuzu's that I linked earlier --- about fat women and doctors, and how doctors both miss underlying conditions that need treatment because they think fat people just need to lose weight, and also how doctors will see a fat woman's fatness as so dangerous, so unhealthy, that they will prescribe extremely aggressive measures to get them to lose weight. Her other entry is about her personal journey toward fat acceptance, and how for her, accepting her body came as part of her radical feminism, and her rejection of heterosexuality:

[A]lthough I had previously strenuously denied any connection between hating my body and wanting men to like me, when I stopped wanting men to like me, I stopped hating my body. Not immediately, in a flash of insight, but gradually, over time, I realised that I was looking at myself in the mirror and not thinking 'ugly' -- not thinking anything at all, really, just looking for toothpaste on my chin or whatever.

Hating my body/self was, for me, expressed not only in extreme dieting and thinking myself deeply ugly, inside and out. I also hated my body by allowing men to use it, by letting men fuck me, when I (the tiny little voice inside me that was barely allowed to speak) knew that I was being violated and used. It was a joyful moment when I realised I could just stop.

I especially liked that entry of hers, because it's probably the closest any other woman has come to describing a relationship to her body, and to the concept of "attractiveness" and whether one possesses it or not, that resembles mine. It's not a total match, and some things are actually very different between the two of us --- I never went through a period of intense dieting and *wanting* to be thin and conventionally attractive like she did, for instance --- the end state she describes is very close to what I have, and it entails a rejection of beauty and attractiveness rather than the reclamation of those things that seems to be a lot more common for large women who learn to love their bodies. I might write more about how that came about for me later, but for now I was just really happy to see someone else articulate these feelings that I also have, and have struggled to characterize accurately.

Neither This Blog Nor My Etsy Store Is Dead ...

... and what better way to demonstrate those two facts than by posting pictures of my latest offering?
One reason I haven't been posting, reading or commenting as much on blogs is because I've been having a glut of ideas for jewelry pieces, and thus have been spending a lot of time making them.

Most of them are sitting around in a half-finished state, as problems arise and have to be troubleshot, worked around or --- sometimes --- the piece in question needs to be started over altogether.

(Problems usually take the form of too many loose ends not staying hidden, too many unsightly knots or awkward bulges, or a bead unexpectedly shattering as I try to force too many strands of thread through it.)

But I have two new projects that *are* totally done, and here's one of them!

As I might have mentioned before, I love geometric shapes. I also love contrasting colors.
This panel bracelet manages to tie both of those things I think are awesome together, with its framed boxes in alternating canary yellow and ... whatever you call a light blue that has a (very slight) hint of teal or turquoise in it. Each of those panels is made of twelve rows of twelve seed beads, all woven together with peyote stitch. (The beads are wider than they are long, so a 12 x 12 matrix ends up being a rectangle, not a square).
Another thing I love --- on bracelets, at least; on necklaces they tend not to stay fastened --- is a button or toggle clasp. Much easier to open or close than those thumb-operated ones with the tiny levers that require you either to have long fingernails (nope) or to never, ever lose your grip (also nope) in order to open them one-handed. Lately, just about everything I make has a button clasp, but I did get a set of toggle clasps recently that I decided to use making these:

(That's my arm --- big, hairy, and stylish!)

I made three of these; two to sell/wear myself until they are sold, and one I gave as a gift.

I really like this motif of the rectangular panels with geometric designs on them strung together on a sort of cuff. I think it's one of the more original design templates I've come up with, and I'm definitely doing a lot more with it.

"I Had to Get Through School by Going Through the Back Door": Temple Grandin on Gatekeeping in Higher Education

Here's an excerpt from Temple Grandin's book Thinking in Pictures, about how educational institutions tend to keep bright but unconventional thinkers out of science, engineering and academia, rather than steering them toward these professions:

There are few Einsteins today. Maybe they all flunk the Graduate Record Exam or get poor grades. I had to get through school by going through the back door, because I failed the math part of the Graduate Record Exam. My grades in high school were poor until I became motivated in my senior year. In college I did well in biology and psychology but had great difficulty with French and math. Most of the great geniuses have had very uneven skills. They are usually terrible in one subject and brilliant in their special area. Richard Feynman had very low scores on the Graduate Record Exam in English and history. His physics score was perfect, but his art score was in the seventh percentile.

Even Einstein, after graduating from the Zurich Federal Institute of Technology, was not able to obtain an academic appointment. He annoyed big important professors when he told them that their theories were wrong. He had to take a job at the Swiss patent office. While he was a patent clerk, he wrote his famous theory of relativity and got it published in a physics journal. Today it would be extremely difficult for a patent clerk to get a paper published in a physics journal. If Einstein had lived today, his paper probably would have been rejected and he would have stayed in the patent office.

There are many examples of great scientists, artists, and writers who were poor students. Charles Darwin, the father of evolutionary theory, was not able to master a foreign language. When he left school, he was considered only an ordinary student. Darwin wrote in his autobiography, Life and Letters, which was edited by his son Francis, "I was considered by all my masters and by my father as a very ordinary boy, rather below the common standard of intellect." He found life at Cambridge University dull and did poorly in mathemathics. Darwin's saving grace was his passion for collecting. This provided the motivation to go on his famous voyage on the Beagle, where he first formulated the theory of evolution.

Gregor Mendel, the father of modern genetics, was unable to pass the exam to get a high school teaching license, according to Guinagh Kevin in his book Inspired Amateurs. He conducted his classic experiments in the corner of a monastery garden with pea plants. When he presented the results at his university thesis defense, he failed to get his degree. Nobody paid any attention to his wild theories, but fortunately 120 copies of his paper survived and were recognized as the works of genius that they are after his death. Today his principles are taught in every high school science class.

During my career, I have met many brilliant visual thinkers working in the maintenance departments of meat plants. Some of these people are great designers and invent all kinds of innovative equipment, but they were disillusioned and frustrated at school. Our educational system weeds these people out of the system instead of turning them into world-class scientists.

Anemone has also covered this issue in some depth: her essays about struggling to find a niche in both the academic and work worlds deal as much with the difficulties of gifted (but not necessarily autistic) people as with those of autistic people (who may or may not also be gifted).

Anemone also has some very similar thoughts about the generalist bias in education and how that puts autistic students at a particular disadvantage:

[Tyler Cowen, writing in the Chronicle of Higher Education] suggests that academia is a favourable environment to the autistic adult, because it allows for specialization in great detail. Personally I found that even an undergraduate education was too generalized for me, and while I did enjoy grad school much more, it was too little too late, and I lacked sufficient training to get into a PhD. Maybe it depends on which department you're in, or maybe it depends on what you look like. Or maybe you need to get into a field where you hit it off with your instructors, so you can tap into the informal half of your education, something I did not do.

I suspect that both science and the arts are favourable to autistic people, precisely because they do allow a person to focus on one thing to the point of excellence. I have pointed out before that this desire to focus on one thing in detail is characteristic of both gifted/successful people and autistic people. I suspect that it is also true of athletes, since a great deal of successful athleticism comes from the brain, too.

I wonder what would happen if all people with specialist brains were put on a different track by high school, on the basis of how their brains worked rather than their interests, with fewer, more concentrated courses each year, so that the generalists could continue to generalize, but the specialists could commit to excellence. As it is now, it's on the basis of whether you're interested or not (at least in North America), and some of us specialists are unable to get into specialized programs because we get elbowed out of the way, or don't know how to make the transition, or don't even know we're allowed to. I wanted to switch to a fine arts high school as a teenager, but I thought you could only switch at the beginning of grade 9, plus I thought you had to be some sort of super-genius, with a portfolio that would knock over God. All without any help from anyone.

I also think a generalist bias might prevent some children who are gifted in one area from being recognized as gifted at all --- with our educational system's focus on grade point averages and standardized test scores (which measure, and average, a person's ability across a wide range of cognitive skills --- sometimes with very different skills lumped together in the same category, like including geometry and algebra questions in a single math category, when geometry and algebra use different kinds of reasoning, and many people find they are good at one and poor at the other), a child who scores very high in some areas and very low in others averages out to be merely mediocre.

I also think it's important to point out that neither Anemone nor Temple Grandin is talking about only autistic people in their discussion of gifted people with wildly uneven abilities; both concede that this sort of cognitive profile is a common one in autistic people, but Anemone stresses that it is also very common among intellectually gifted folks, most of whom are not autistic. Grandin believes that a lot of the same cognitive traits underlie autism, certain mental illnesses and exceptional creativity, and that the balance between giftedness and disability depends on how extremely one manifests a particular trait. A little bit of hyperfocus can enable you to become an expert on something; too much, and you're stuck with unproductive, debilitating obsessions.

PLoS ONE: Children from Wealthier Families More Likely to Meet Criteria for an ASD

EXECUTIVE SUMMARY: A recent study shows that wealthier families are somewhat likelier than middle- and low-income families to have autistic children. The study compares surveillance data on a cohort of eight-year-old children in fourteen areas of the U.S. in 2002 and 2004 whom the CDC decided, based on school and medical records, met diagnostic criteria for ASDs with U.S. Census data from 2000 on eight-year-old children living in those same areas of the U.S. Statistical analyses were done on both groups' demographic data, which showed that the autistic children tended to come from somewhat better-off neighborhoods than the general population of eight-year-old children. Because of the study's use of public-school records, and its inclusion of a sizable group of never-before-diagnosed autistic children, its authors believe the association they found between higher socioeconomic status and higher rates of autism prevalence is not solely due to richer people's unfettered access to diagnostic services, but instead might also reflect some other factor that positively correlates with both autism and higher SES: the authors suggest both advanced parental age and excessive hygiene as potential candidates for this mystery factor.
___________________________________

This article in the Kansas City Star alerted me to a study published in PLoS ONE on July 12, giving the first indications I've seen that the conventional wisdom about autism and social class --- that autism is mainly a disorder of the upper classes --- might have more to it than just the simple fact that people with unfettered access to health care are a lot more likely than people without such access to get diagnosed with autism-spectrum conditions.

The way I had understood it, there was no big mystery there: people who can afford to see a doctor in non-emergency situations are going to get all sorts of things diagnosed at a higher rate than people who can't afford that kind of preventive care. In that framework, a higher rate of autism diagnoses among children from wealthy families says nothing about autism per se; it just serves as one more example of the huge inequality of access to health care here in the U.S.

The study I mentioned --- carried out by Dr. Maureen S. Durkin and her colleagues --- tries to address how much of the association between autism and higher socioeconomic status (which Durkin says shows up about half the time in the existing literature on the topic) is due to this gap in access to health care and how much may be due to other factors yet to be uncovered.

To try to include autistic children lacking formal diagnoses in their analysis, Durkin et al. relied on the CDC's Autism and Developmental Disabilities Monitoring Network, whose methodology is described here* on the CDC's website:

In 2000, CDC established the Autism and Developmental Disabilities Monitoring (ADDM) Network to track the prevalence and characteristics of ASDs in the United States. The ADDM Network is a multiple-source, active, population-based surveillance system that reviews developmental records at educational and health sources and employs a standardized case algorithm to identify ASD cases.

There is also a flowchart showing where they get their data from and how they decide which children are actually autistic; unfortunately, the flowchart is still pretty vague about which "educational and health sources" they use. It does mention that they use "multiple" of each, though.

So, in the years 2002 and 2004, the ADDM Network collected data on 407,578 (in 2002) and 172,335 (in 2004) eight-year-old children living in fourteen areas around the country: the northern half of Alabama; the central region of North Carolina; the Coastal and PeeDee regions of South Carolina; the entire states of Arkansas and West Virginia; parts of the cities of Denver, Colorado; Atlanta, Georgia; St. Louis, Missouri; and Salt Lake City, Utah; and the cities and surrounding areas of Phoenix, Arizona; Baltimore, Maryland; Newark, New Jersey; Philadelphia, Pennsylvania; and Milwaukee, Wisconsin**. Of these children, 2,685 met diagnostic criteria for an ASD in 2002; in 2004, the number was 1,376.

Durkin et al. took the data on all the children determined to be autistic --- minus the ones living in Utah and West Virginia, since those sites didn't provide enough information to determine socioeconomic status for the children living there --- and compared prevalence rates for ASDs across three socioeconomic "tertiles": high, middle and low socioeconomic status, as determined by three factors: 1) percentage of people in the area living above the poverty line, 2) percentage of adults 25 and over in the area who have at least a bachelor's degree, and 3) median household income for the area. They also compared those factors between the autistic children and the general population of eight-year-olds living in the same areas at the time of the 2000 census.

Compared with the general population of eight-year-olds living in the same areas, autistic eight-year-olds are somewhat less likely to live in "poverty areas," or areas defined in the 2000 census as having 20% or more of its families with children living on poverty-level incomes, with 16.8% of autistic children living in such areas and 25.8% of all children living in them.

Similar small-but-noticeable differences show up with respect to the other two factors, median household income and proportion of adults with college degrees. Among the general population, the median household income was $42,898; among families with autistic children, it was $50,114. Autistic children, on average, tended to live in census blocks where a larger proportion of adults 25 and older had bachelor's degrees; 30.3% had them compared with the general-population figure of 24.8%.

These differences kept showing up, even when the comparisons were set up differently: besides comparing autistic children with their (approximate) peers on measures of socioeconomic status, the researchers also compared autism prevalence rates across the three socioeconomic-status categories they'd created, and found that the richest group had the highest proportion of children meeting criteria for autism, the middle-income group had the second-highest, and the poorest group had the lowest. This pattern showed itself across all the racial categories included in the study, too.

Now, the question is, does the design of this study correct sufficiently for (well-established) class differences in access to specialized medical and educational services? Can its findings of autism prevalence increasing with socioeconomic status be taken at face value?

Part of the reasoning behind the authors' contention that at least part of the association between autism and wealth is real lies in their use of school-based, as well as clinic-based, documentation. Theoretically, all children in the U.S. going to public schools are going to be monitored by their teachers and screened for learning and developmental disabilities if they start to have problems with classwork, behavior or social interaction. But not all schools have the resources to make this sort of individualized attention a reality. It probably won't surprise you to hear that schools in districts where poor people live have less money than schools in districts where richer people live, and accordingly the poorer school districts are less likely to employ psychologists, paraprofessionals or even college-educated teachers. With less space and less staff, also, even very dedicated, insightful and observant teachers aren't able to give individual attention to every student they see struggling.

The U.S. educational system might be more equitable than its health-care system --- last I heard, public schools were still legally required to educate every student living in their districts --- but similar issues of accessibility plague both systems. Even if our educational system is technically socialized --- available for free to everyone, paid for with taxes --- there are still huge differences between the kind of education (including special education) you can get at a well-funded school in a primarily upper- or middle-class district and the kind of education you can get at a school in a poor district. The richer districts can levy additional taxes to give more money to their schools, and students going to those schools also pay student fees to cover equipment and activities.

All of this leads me to suspect that ascertainment bias can be just as big a factor in an educational setting as in a medical setting.

The study authors tackle this issue in their Discussion section:

An important limitation of this study was that the ADDM Network surveillance system relies on information for children who have access to diagnostic services for developmental disabilities. We could not rule out the possibility that the quantity and quality of evaluations and the information available for case ascertainment might have varied by SES. We looked for evidence of this by examining the number of evaluations per child with ASD recorded in the ADDM Network surveillance system, reasoning that if the higher prevalence of ASD among children of higher SES was due to increased access to diagnostic services, high SES might be associated with a higher number of diagnostic evaluations per child. However, we found no association between the number of evaluations per child and SES. We also examined the mean ages at diagnosis by SES and found that children of high SES received an ASD diagnosis at an average age of 58.0 months, 1.1 month earlier than those of middle SES (p = 0.2838) and 2.7 months earlier than those of low SES (p <>

The other important factor that somewhat mitigates the effect of differential access to the educational and medical professionals who can diagnose autism and provide autism-related services on this study's outcome is the inclusion of a subgroup within the group of autistic children they studied who had no prior diagnosis of autism; there were enough of these children (1,244) to do a separate statistical analysis of this group to determine whether the association between autism and socioeconomic status still holds up among children who had never been evaluated. The association did still stand: even among those children with no previous diagnoses of ASDs, the ratio of autism prevalence as determined by the CDC of low- to middle- to high-SES children was 0.78:1:1.09. (That is, the poorest children were somewhat less likely to be autistic than the middle-income children, who in turn were somewhat less likely to be autistic than the wealthiest children). It's worth pointing out that the ratio for children with previous ASD diagnoses is stronger in both directions, at 0.70:1:1.25.

While I'm not sure this study goes far enough to correct for huge systemic inequities in availability of services, those two findings --- that number of evaluations per child does not vary with SES, and that autism prevalence does vary with SES among never-diagnosed children --- introduces some doubt in my mind where there had been none before. Maybe there *is* more to this socioeconomic-status thing than just access to diagnostic services. I remain skeptical, but no longer absolutely convinced that ascertainment bias explains everything.

*A more complete description exists in this 2007 article in Pediatric and Perinatal Epidemiology, for which I cannot find the full text anywhere online for free.

**The list of fourteen areas applies to 2002; in 2004, only eight of those areas participated --- Alabama, Arizona, Georgia, Maryland, Missouri, North Carolina, South Carolina and Wisconsin. That's why the numbers are so much lower for 2004.

Durkin, M., Maenner, M., Meaney, F., Levy, S., DiGuiseppi, C., Nicholas, J., Kirby, R., Pinto-Martin, J., & Schieve, L. (2010). Socioeconomic Inequality in the Prevalence of Autism Spectrum Disorder: Evidence from a U.S. Cross-Sectional Study PLoS ONE, 5 (7) DOI: 10.1371/journal.pone.0011551