Field of Science

Hey, moms. Got science?

In a classic manifestation of the distaff, I was vacuuming my hopelessly entropy-overwhelmed home the other day, venting my lack of control over certain aspects of my life. Somehow, venting through vacuuming also happened to clear my mind sufficiently to allow space for a new idea. Since last weekend's post about the sad state of science over at HuffPo, I'd been pondering the sad state of science around the interwebz in general, wondering why it's so godawful. Like many an American before me, I practically shook my fist at the air and railed, mentally, through the vacuum noise, "What is wrong with education in this country?!?"

And that bewailment led to the idea, based on three observations somewhat derived from my distaff-related occupation of house cleaning while trying to wrangle three unruly boys having a day off from school. First, women are largely the guiding hands behind their children's education level, especially as a "transmission mechanism" to their daughters (PDF of paper here). Second, educational empowerment of women in general can lift a society, a nation. Even Laura Bush agrees. A woman's education can be contagious, and her educational outcomes are linked to those of her children (abstract only; paywall). Finally, women are the healthcare consumers for their families, the primary decision makers about health and the primary caregivers. If they're part of the family, they're usually the family brain trust.

So, what's the big idea, based on these three observations? I hypothesize that one avenue to increasing scientific literacy in our country is the mothers. There is much justified bemoaning about the lack of women in science, specifically the "hard" sciences and more specifically tenured women, but...what about the lack of science available to women who aren't in science but who are into science?

Oh, you might say, dismissively, especially if you're, say, one of the many magazines targeting women: Women don't care about science. They care about women stuff, pink things. I say they can care about both, but are you offering both? I turned to those magazines and examined their websites. Here's what I found. Sex. Love. Beauty. Health. Bride. Family. Career. Money.

No science. So, thinking that perhaps the science might lie hidden within those headings, I searched the sites using only the term "science." Limited, I know, but I'm a work-from-home mother of three children, two of whom I homeschool. Give me a break.

The search at the Redbook site yielded hits like "Surprising sex-planations. The science behind sex. The surprising scientific explanations behind sexy truths," and "Why walking does your body good." A search at Cosmopolitan--because what self-respecting cosmopolitan gal wouldn't have at least a passing interest in the Hadron collider?--got me to "The A-cup revolution" (viva las tetones petites?) and "5 things you do that stress him out." Jesus.

Thinking that perhaps a more sober publication such as Self might have more sober or at least less offensive offerings, I searched science at Self. Lots of health hits, slightly more sober, but all with that "girl" vibe, such as "Superfood diets for glowing skin" and "News flash! Organic foods may have more nutrients." Sigh. Finally, I turned to Women's Health. It has a grown-up name, right? I didn't even do the search. One of the tabs a gal can click on this site, in addition to the standard Sex&Love, Food, Beauty, and Style is, "Look Better Naked." No.

But soft, you may say. What about the men? Are they any better? The answer is, Slightly. I searched Esquire, GQ, and Mens Journal. There's science in there, some real science, even among the most frivolous of masculine froufrou. There's also a whole lot at one of them about men and orgasms. Shocking, I know. But the point of this post isn't what men find out there among the offerings targeting them. It's about what women find...or don't find...because it's the women who bring it to the children when it comes to education.

So, is the message here, "Science, women just aren't that into you?"

I'd give to that in except for one thing: Every time I post something about science on Facebook, women--some women I've not seen for 25 years--will read it. They'll read it, they'll "Like" it, they'll comment about how interesting it is, how glad they are that I write things they can understand, how cool it is. These are non-scientists. They're moms, they're all over the country. I can honestly say that I've not ever had one single man do that on a Facebook post.

My Facebook experience clearly cannot serve as the sole rationale for proposing that scientists--and their vast army of PR folk--start targeting mothers as the conduit for growing a generation of the scientifically oriented. It's simply anecdotal. I'll add to it that every moms' night out I've ever been a part of has involved the women at the table literally asking me, "Tell me something really cool and weird that's science!" Add it to my three observations of a mother's role in a child' education and society, and draw your own conclusions. I point to my Facebook wall, and I see there an interest among female non-scientists and mothers in science. If the Baroness can do it, so can I.

So then, I pointed at BlogHer, the behemoth blog network and blogging gateway targeting women. Once upon a time, a few years ago, I queried the Powers That Be at BlogHer about why they didn't have a Science section. If I'm extracting the appropriate memory from the recesses of my child-addled brain, the response was something along the lines of, "That's covered in health and just not otherwise attractive enough for our demographic."

Here's the BlogHer demographic as of a few years ago. I can only imagine that it's solidified in the intervening years as BlogHer has grown. Almost all of the readers there are female (natch). Almost all have an education level beyond high school. At least half have children living at home. HALF. They receive 27 million visits a month. Yet, there is no science tab on the site.

Their tag line is "Life well said." I think that you can't speak well about life if you lack an understanding about how it works, if you aren't exposed to the wonder that emerges every day through new discoveries in science, whether the study of life or of the processes that yielded it. Python blood grows hearts. Everything causes autism. Barnacles are extraordinarily well hung. Einstein might have been wrong...or not. Robotic Venus flytraps will trap bugs and eat them for fuel. Come on, people!

BlogHer could do the world a favor and add a science portal to their offerings. It's one step in the right direction of presenting science to women in unexpected places, in venues that typically--because of their "women-centric" focus--have not included real, wondrous, fascinating science because, hey--women aren't interested in that, right? Well, they are. I've got the Facebook wall to prove it. Or at least to anecdote it.

Maybe it seems like I'm treating science a little bit the way we treat children who won't eat their peas: offer it enough without making a big deal about it, and suddenly, peas are their favorite foods. But that's not really the case. All it takes is one presentation of "Parasite causes zombie grasshoppers to commit suicide," and the clicks will come. These stories aren't bitter green vegetables to choke down. They're the most delectable of morsels, but many women won't know about these morsels if they aren't included in the menu. Literally. BlogHer, I'm talking to you.

Humans are born scientists. We examine cause and effect, come up with ideas about the links, test them, in a perfect world discard the ideas that fail the test, lather, rinse, repeat, draw conclusions. Children emerge as little scientists, testing and re-testing their worlds when given a bit of a mystery to solve. Children are born scientists. How do we make sure they continue to grow that way?

You don't have to be a scientist like I am to grow little scientists. Einstein's mother was a pianist, not a scientist. You simply have to be engaged. And if you're a mother, your role--as research indicates--is inextricably linked to your child's education. So what can you do while you wait for BlogHer or Glamour or Ladies' Home Journal to sketch in a "Real Cool Science because It Is Science not because It Is about Orgasms or Sex" department?

Research indicates that all it might take is a little bit of mystery to solve. You don't have to be a scientist to encourage critical and scientific thinking. When a child asks a question, instead of (a) blowing it off with an "I don't know" or (b) answering it with what you do know, consider the following:
  • Ask instead, "What do you think?" This worked for Socrates until that whole poison cup thing.
  • Say, "Let's look it up." Then, look it up...or better, yet, have the child look it up with you.
  • Do your own musings out loud: "Hmm, I wonder why?" Show your own intellectual curiosity. It's contagious.
  • When you read something interesting from science (BlogHer, I'm talking to you), share it, show enthusiasm for new knowledge.
  • The Web has many excellent science videos/series on offer...options are almost endless, and children love them. Be sure to vet it yourself first. PBS is a place to start. My children are also very much enjoying their daily BrainPop videos.
  • Look in your community for scientific opportunities in museums, at local universities, at the library. If none exist, look into building your own, such as Science on the Town nights with the help of a local high school, community college, or university.
If you build it, they will come. BlogHer...I'm talking to you. Moms...I'm talking to you, too.

This just in: Being alive linked to autism

This last week or so, every day seemed to bring a new finding about something linked to autism. I blogged one of them--diabetes--but who really would have the wherewithal to follow the growing list of factors linked to autism? I guess I would because below, I give you that very list, including current pop hits and some blasts from the past, with some brief commentary. Without further ado--The ever-changing face of autism--or, as some have wisely suggested we call it--the autisms:

Refrigerator mothers. Sooo coooold.
Parents just making shit up. Because we have nothing better to do with our time.
Vaccines. SHUT. UP.
Mercury. Sigh.
The Interwebz. Someone pointed to them. Then there was autism.
Older mothers. We can only be so old, you know.
Depressed or stressed mothers. Wouldn't everyone have autism, then?
Sib with autism. Autism, family style.
Low birthweight. OK, but what about...
High birthweight. Confusing, isn't it?
Growing a big head. My son has the biggest head I've ever seen...except for my own.
Growing a big baby. My oldest son is huge. He also has an uncle who is 6'6".
Being a twin. Concordance confuses people.
Smoking during pregnancy. Is there anything smoking during pregnancy can't fuck up?
Diabetes during pregnancy. Didn't have it, so don't know.
Any complication at birth. And I mean...ANY complication.
Being born in summer. Yep. Seasonal autism.
Being a second born. First borns, only borns...sorry.
Being a later born. As if it weren't hard enough.
Being in a womb. When will we ever have extra utero development!
IVF. But we do have in vitro fertilization.
Lungs with symmetrical bronchiole bifurcations. For once, someone blames symmetry.
Genes AND the immune system gone awry--in the mother. I'm sure that's what made us cold.
Genes. Lots and lots of genes. If I listed them all, this would be an epic post.
Neanderthals (not really; just more genes)
Hyperinuslinemia and diabetes. Hypothesis, not study.
Impaired brain connections. Ya think?
Impaired sugar metabolism. This goes on the assumption that GI problems in autistic people differ from those in non-autistic people.
Biomarkers. Lots and lots of biomarkers. This one's the Jackson Pollock of studies.
Clomid. Mom's fault for wanting you.
Terbutaline. This is related to prematurity.
Glycine, something about glycine. You know the modern art that you stare at, trying to figure out why it's supposed to be art? This is the science version of that.
Regulation above the gene (epigenetics). Because no gene is an island or an unsullied, perfectly used code.
Living near a freeway. There goes the nation.
Specific facial features. Elves.
Specific finger features. My fingers tell me I'm male or a lesbian. I am neither.
Special brain differences. Ya think?
Too little oxytocin. Oh, oxytocin. You weird little hormone, you.
Too much androgen. Viva la...el...hormone!
Too much androgen...or too little estrogen? OK, so this one's my own contribution. A gal's gotta contribute.
Too much money. We wish.
Lyme disease. Tick, tock, not.
Antidepressants. See "stress, depression" above. If you're an autism parent and this list didn't do you in, congratulations on how well those anti-depressants are working.
Image, via Flickr.

Women know something you don't

Three of my four grandparents were only children. Born early in the 20th century, in the period betwixt the great wars, coming of age in the Great Depression. Only children, in spite of having parents married for decades. Three of them. In all likelihood, their own parents, my great-grandparents--and I knew all of my great-grandmothers--consciously chose not to have more children because, well--it was the Great Depression.

The Great Depression was a hallmark of sorts in American history beyond the economics of the era. It also marked the first time in U.S. history that the population failed to achieve replacement levels of reproduction--the level required to replace existing people. Indeed, the birth rate fell by 15% during that period. It's true that many people delayed marriage--they couldn't afford it. But it's also true that divorce rates dropped, too, as couples couldn't afford either another child or maintaining separate households. How did my great-grandparents and the others who contributed to this 15% drop in population do it, especially in an age without 99% effective birth control?

I can't speak for my great-grandparents, but the realistic explanation for having one child over decades of marriage is either contraceptives or abortifacents. Make no mistake about it: In spite of efforts to quash women's right to control what happens with their bodies, women have always known about and used both for millennia. Outside the purview of men were the feminine oral histories of how to prevent pregnancy or induce abortion, either chemically or mechanically, and it's something women did. It wasn't considered an issue for discussion with anyone but the women. It was just something women knew, something they did, to maintain control over what happened with their bodies and their families.

One reason they did it, in addition to economics, was fear. Pregnancy has always been a killer of women. Since serious record keeping began in the Western world, in England and Wales, for example, maternal mortality peaked in the late 19th century at almost 700 women per 100,000 births. In the United States, the peak occurred in the early 20th century--in fact, about the time some of my grandparents were born--at over 900 women per 100,000 births. Nature, in the absence of cultural and technological assistance, is an indifferent actor, you see, but a great mathematician: As long as births are at replacement, all those deaths don't matter. But we're more emotional about our math: If something were killing 900 women per 100,000 births today in the United States, we'd consider it a plague. Is it any wonder that women, facing both a life-threatening event and economic straits, might turn to age-old contraceptives or abortifacents to ward off both?

Of course, some of this mortality had to do with medicine itself, the waves of childbed fever passing from childbirth attendant to mothers, sometimes like the plague itself killing 70 to 80% of infected women. If a woman didn't die from the pregnancy or birth--pre-eclampsia, pre- or post-partum bleeding, pelvic disproportion--the infections that followed could easily carry her off, a threat that lingered in Western society well into the 20th century.

In the midst of all this pain and death, all related to reproduction, women had their own remedies and felt no shame in that knowledge or its application among other women. After Charlotte Bronte died from hyperemesis of early pregnancy, her friend and biographer, Mrs. Elizabeth Gaskell, wrote that had she known, she could have given her friend something that would have cured the problem--in other words, an abortifacent.

The pharmacoepia of abortifacents stretches back into the ancient literature. Hippocrates (he of the oath) documented them. Soranus, ancient gynecologist, did, as well. Even in the absence of a clear understanding of physiology, they knew that there were ways to prevent pregnancy--contraceptives--and ways to end one--abortifacents. Sometimes, they arose from the same preventative.

The dual weapons against unwanted pregnancy even made their way into ancient Western mythology in the form of Myrrha. Myrrha was raped by her father (or tricked him into sex with her, depending on your source), the king. To escape her father's attacks (or her lust for her father, again depending on the source), she submitted to being transformed into the myrrh tree, which has long been used as a contraceptive and abortifacent. From this first myrrh tree, Myrrha's son, Adonis, was born. Her reputation is as a rescuer of female victims of incest.

Incest, rape, the repeated and intense pain of childbirth, death from birth or childbed fever...these have been the realities for women since women existed. Sex and reproduction were often necessary but sometimes deadly. There is no absence among women of an ability to grasp these realities and do what is necessary to deal with the potential consequences, even if addressing the reality was sometimes fatal, too.

A recent highly publicized report tried to link abortion and mental health issues with women. It is a review/meta-analysis that suffers accusations of having ignored literature finding no link. It also ignores the fact that abortion isn't a new phenomenon, that women have managed contraception, abortion, and pregnancy for thousands of years, on their own, among themselves. If deprived of safe, modern mechanisms for doing so, they will continue with the dangerous versions with benefits that, for women who turn to them, don't outweigh their risks. Make no mistake about it.

The headlines arising from that study, "Abortion increases mental health problems" and "Women who have abortions face double the risk of mental health problems," leave out the fact that the review in question failed to address whether or not mental health problems (and known risk factors for such, including abuse and addiction) instead are linked to increases in abortion. Actual population-based studies have found no link between induced first-trimester abortion and mental health. Having a baby, on the other hand, is a huge stress inducer and can adversely affect mental health. I know that all those politicians and others out there who are so concerned about women's mental health will take these findings to heart and act accordingly.

Snark aside, contrary to popular and persistent belief, women as a population can handle and have always handled stress with resilience, often thanks to the same network that was the female reproductive brain trust: other women. In the light of that, it's time to trash the canard that women are mental weaklings who can't decide things for themselves or deal with the consequences of their decisions. Having sex may be an outcome of a moment's heat for both men and women, but women don't make reproductive choices with the same shallowness of decisionmaking they might use to order at a fast-food drive through. Shockingly, they think about it deeply and are capable of managing the consequences. In fact, most women who have abortions in the U.S. already have children, so they are fully aware of that outcome.

Before women could read, before books were printed, women had among them their own version of Our Bodies, Ourselves, a real book that just passed its 40th birthday. Like the centuries-old oral version, Our Bodies, Ourselves was the product of a group of women, the Boston Women's Health Collective. By the time of its birth, it had become necessary as the collective of women's knowledge had become separated and isolated, as women's bodies had become not their own but political tools.

Women's bodies--you know, their very own bodies--continue to be under political and religious assault today both on the contraception and the abortifacent front. GOP candidate Mitt Romney has expressed support for a constitutional amendment stating that life begins at conception (does he think sperm are dead? Eggs?). Such amendments are receiving support in some states in a horrific and terrifying effort to erode any control women have over their own reproduction. By the way, when women have control over their reproductive health, the benefits to society are immeasurable. When the Taliban--or politicians--have control over women's reproductive health, the negative effects are bottomless.

Romney received a question from a woman a few days ago, asking if the former governor realized that because some forms of hormonal birth control act to prevent either implantation or conception, that such an amendment would, in effect, outlaw hormonal birth control, the most effective form of contraception available. His response showed a clear lack of understanding about how women's bodies function and about how birth control functions, compelling Rachel Maddow to invent a female anatomy and physiology chart just for the Man Cave.

In the days when men had nothing to do with reproduction but the sex act, men were, of course, generally ignorant about these things, and women did what they felt was necessary, using woman-disseminated (ha) knowledge. Now that men have a little knowledge, it's become a dangerous thing for women. But make no mistake: try as they might, they can't know everything because, try as they might, they cannot make individual women's bodies their own.

What Romney didn't grasp is that while most hormonal birth control prevents conception, sometimes hormonal birth control may also prevent implantation if fertilization occurs. So like the myrrh itself, it can act both as a contraceptive--causing a woman to cease ovulating so that no egg is present for fertilization--or as an abortifacent, hormonally preventing implantation of a fertilized egg in the uterine wall. Pardon me for a moment while I clarify that: In a woman's uterine wall. A person's uterine wall. The uterine wall of an individual woman, inside of her body.

Were there to be a constitutional amendment stating that human life begins at conception, all hormonal forms of birth control--with their either primary or secondary function of preventing implantation of a ball of dividing cells into a tissue called the uterine lining--could be illegal. Miscarriage could be considered criminal, ranging from homicide or involuntary manslaughter, and open to investigation for everything the woman has done that might have been related to it.

Any woman who's ever undergone the pain of a spontaneous abortion or miscarriage of a wanted pregnancy may be able to imagine how invasive, shaming, and horrific such an investigation into her privacy, her body, might be. Any woman who's ever had an abortion--for medical reasons or from choice--can imagine how invasive, shaming, and horrific such an investigation into her privacy, her body, might be. A married woman with only one child--like three of my great-grandmothers--would be an object of suspicion. How is she doing it? She'll never tell. But make no mistake about it: Those top-secret girl things that you suspect women know and you don't? We do. Sorry. Our bodies, our selves.

Ironically, according to Gawker, back when Romney was pro-choice and allowed inclusion of abortion coverage in the MA health care law, abortion rates actually fell. But the real key here is that this effort to prevent abortions by saying that life begins at conception would, in fact, result in increases in unwanted pregnancies. Unwanted pregnancies will lead, as they have for millennia, to women's turning to surgical abortion or abortifacents, safe or dangerous, whispered through the womanhood grapevine. Abortions will continue, but women will have become criminals for having them or suspected criminals for losing a pregnancy. Or, as is happening in Kenya, they will die.

Reduced access to contraception, the hijacking of a woman's tissues and organs as an incubator for the state, will lead to greater reliance on these ancient abortifacents and backstreet abortions, as has happened in Kenya, in the absence of access to the most effective form of contraception, hormonal interventions. Anti-abortion efforts and news media scare headlines that present women as vulnerable to mental illness, incapable of making serious, informed decisions about reproductive choices, or unable to have abortions without legal sanction are wrong on all counts. Women know this. They know a lot. Make no mistake about it.

Photo via Flickr.

Huffington Post: Irresponsible mouthpiece for the World of Woo

Huffington Post is notorious for publishing anti-science garbage. But I don't think anything they've vomited into the Webosphere is as egregiously misleading and anti-scientific as this piece by one Robert A. Kornfeld in which he purports to let us all know exactly why your physician's belief in the efficacy of modern medicine is a myth and in which he exposes an ignorance about genetics so profound that I may lose hope in humanity.

Before I take each of his "myths" one at a time, let me give some background on the good doctor himself. Dr. Kornfeld, you see, is a podiatrist. He is a foot doctor who, by the way, has a "holistic" (oh, that word. That woo-ey, woo-ey word) practice in which he promises to treat everything from eczema to neuropathy.

The "myths" themselves, as you will see, are not myths at all but instead are argued against the backdrop of the mythology of the World of Woo. This mythology is a dangerous one because it assumes power of the individual over physiological processes and implies that only the strong who can exert that power truly have a right to health.

Alleged Myth 1: Technology has improved healthcare.
The World of Woo has a long history of disdaining and distrusting "technology" while relying on technology. Hyperbaric oxygen chambers are an example. In this screed against technology, the good podiatrist asserts, without any sense of irony, that somehow, in spite of all this technology, "there has been an onslaught of increasing pathology." I wonder if it ever occurred to him that the "onslaught" is in large part attributable to better diagnosis through technology? Whatever his vague term "technology" means, which is unclear, he himself doesn't seem indisposed to bragging about using it himself. On his Website, he lists sonography and fluoroscopy as part of his arsenal of health-care weaponry. What does he think those are, trepanning tools?

Given the lack of specificity in his discussion of "technology," it's difficult to know exactly what aspects of technological advancement in healthcare he laments. Is it the ability to ease pain? To diagnose diseases such as multiple sclerosis earlier and earlier so that disease-modifying therapies can be employed and ward off significant disability? To operate in utero to cure otherwise fatal congenital disorders? To identify colon polyps with a disposition to become cancerous before they actually do? Oh, the humanity!

Alleged Myth 2: Inflammation is bad.
Here, the good podiatrist defends inflammation as a natural process of repair, as "actually a good thing," and argues against using anti-inflammatories. Never mind that suppressing inflammation in diseases like multiple sclerosis or rheumatoid arthritis is efficacious and produces significant relief and even cessation of the disease process. Never mind that chronic inflammation is responsible for atherosclerosis and a host of other significant disorders. The good podiatrist argues for inflammation as beneficial, but what he ignores is the distinction between acute and chronic inflammation. What he gives us here is the classic World of Woo argument that "nature does it, so it's OK." Nature is responsible for diseases from cancer to autoimmune disorders to atherosclerosis to osteoporosis. Just because Nature does it doesn't somehow make it good. Nature doesn't give a shit.

Alleged Myth 3: Genetically coded diseases are unavoidable.
This particular section provides an excellent example of two issues that we should really work harder to overcome. Issue 1 is science education in this country. If Kornfeld is an example of what someone trained in some kind of medicine thinks about genetics, then perhaps it's a losing battle. Issue 2 is writing about science. Don't do it if you simply have no idea what you're talking about. In the World of Woo, neither of these matters. There are facts and data, and then there is the magical intuition that trumps them.

I can't take this part by part or this post would become an epic. I'll just take a couple of examples.
Let's take a closer look at this issue. If having a gene for any illness condemns you to having that disease, then why are you not born with the disease you are coded to have? Why isn't every person who carries a gene for disease suffering at all times from that disease? The answer is that all genes do not express themselves at all times and many never do. There must be a reason why the body would call upon a gene to express itself. Otherwise, none of us would be able to survive the onslaught of genetic expression. So what is it that causes a gene to express itself? If you consider for a moment that diseases are just a complex of symptoms being incorporated by the body in an attempt to protect itself from tissue destruction and/or imminent death, you may begin to get a clearer understanding of what I am trying to say. Once we begin to pay attention to the reasons that a gene might express itself, we may be able to prevent that gene from releasing its code for illness.
First of all, the good podiatrist assumes that having a gene mutation that confers risk for a disease is the same thing as have a genetically conferred disease. He talks about gene mapping, by which I think he means association studies, in which the presence of specific sequences is correlated with the presence of specific disease states. These correlations are expressed as risk. For example, I have about four times the risk of specific autoimmune diseases because I have a few mutations associated with increased risk. Do I have all of these autoimmune diseases? No.

Kornfeld takes this information--sort of--and uses it to argue that having the "gene" as he calls it (what he really means is "allele" or "mutation") doesn't mean you'll get the disease. Unless we're talking about Mendelian inheritance here, he's right. But he asks a question that I'd find hilarious if it weren't so wall-eyed nutty: "Why are you not born with the disease you are coded to have?" In other words, if you're carrying around BRCA1, which is strongly associated with breast cancer, why aren't you born with breast cancer?! I guess the first reason would be that you're not born with breasts. ETA: Timing of development, timing of gene interactions with hormones and other signaling molecules, timing of growth, time itself...they are all factors in the disease process.

He then, in the above, describes the body as "calling upon a gene to express itself." As it happens, many genes involved in cancer are genes the body expresses at some point in every cell. They're expressed because they're necessary to growth and life. Kornfeld tries to argue above that something you do as a person in your life "calls upon the gene to express itself." This is a classic World of Woo tactic of "blame the individual for the disease." It's YOUR FAULT YOU GOT BREAST CANCER, not the fault of the GENE YOU FORCED TO EXPRESS ITSELF!

He then goes on to say that if we could only understand the reasons a "gene might express itself, we may be able to prevent that gene from releasing its code for illness (italics mine)." Genes don't release a code. Genes are the code. They are not a code for "illness." They are a code for proteins. Alterations in the code can lead to proteins that don't do their jobs correctly, which can lead to illness. That, by the way, is a natural process, so in Kornfeld's lexicon, it oughta be just fine. But it isn't, and You, according to Kornfeld, are the one at fault.

He keeps calling disease the "body's way of protecting itself from rapid destruction of tissues or imminent death." I think that generally, the medical profession, biologists, and other people who actually study the mechanisms of disease would describe disease itself as involving a destruction of tissues or imminent death.

At the end of this section, Kornfeld asks a series of what appear to be rhetorical questions. "Are we treating cancer by cutting it out?" Um, yes, unless we treat it with radiation or chemotherapy. He asks about suppressing chronic inflammation in arthritis and using coronary artery bypass grafts for heart disease, asserting that these techniques don't "cure" disease and that what we really oughta do is prevent "genetically coded" diseases, presumably by force of sheer willpower, in keeping with the powerful World of Woo belief that all it really takes to be healthy is to want it badly enough.

Alleged Myth 4: Medications improve health.
Kornfeld starts by asserting that USians are the most heavily medicated people on the planet. I assume from this that he means "Western pharmaceuticals" and would completely discount any World of Woo medication that someone called "natural" or "Chinese" or "alternative." 'Cause if you include all of those, I'd hazard that the most accurate thing to say is that humans are the most heavily medicated species on the planet. Anyone ever heard of betel nuts?

He refers here to drugs as "roadblocks" that physiology will eventually simply drive around, and that this driving around the roadblock leads to side effects. Horrible metaphor aside, he continues with the Woo Word of the Century, "toxic." Whenever your metaphor gets entangled upon itself, you can always cut your way through in the world of Woo if you simply toss in the word "toxic." An exclamation point or two is also useful. !!

Hilariously, he states that "if a patient has high blood pressure and is taking medication to control it, and then they cease taking it, they will see their blood pressure rise again." Ya think? He thinks this is a real coup d'grace by closing with, "Empirically, we see that the medication has not at all improved their health, just their symptoms." How can someone who claims to be a "holistic" healthcare practitioner not see the irony in trying to separate "symptoms" from "health"?

Alleged Myth 5: Childhood immunizations protect us from serious disease.
After picking up the pieces from my exploded head, I forced myself to read this one in its entirety. Once again, given this tsunami of Woo bullshit, I'm forced to home in on just a few examples.

In years gone by, many children were afflicted with polio, measles, mumps, Rubella, influenza, small pox, diphtheria, whooping cough and others. Of course, the majority of these children recovered without incident (other than polio, which caused permanent nerve damage most of the time), but there were some children who had serious sequelae and even some who died from these diseases. Modern science discovered a way to confer immunity on these children so that they would never become afflicted with these diseases, and for the most part, it has been successful. The question is, at what price?

I am so sick of this tired anti-vax trope that these diseases somehow aren't bad just because a few children die because LOOK AT ALL THE ADD, ADHD, AND AUTISM THERE IS NOW!! To use a Greenfieldism, they say, "I point to vaccines. I point to ADHD and autism. That's all."

What's the price of vaccination? Oh, lives? Millions and millions of saved lives? I won't expend the energy to rehash here what I've written elsewhere about the importance of vaccines. You can read about their importance here, here, here (from CDC), here, and here.

The "price" of vaccines, Kornfeld alleges, is a laundry list of unreferenced increases in ADHD, autism, autoimmune diseases, and cancer. He provides not one iota of evidence to back up increases in any of these disorders. In many cases, any increase that does exist is attributable to better diagnosis or changes in diagnostic parameters. Modern medicine has cleared up many a mystery that way. Regarding childhood cancers, some increased in prevalence in the '80s but then stabilized, some have decreased, and some have shown a modest increase. The real news about childhood cancer is that survival rates have increased dramatically, probably thanks to all that useless and dangerous technology and medication (see myths 1 and 4, above).

He then turns to the bizarre concept that we are "interfering with the natural course of genetic mutation," something he bewailed (possibly without realizing it) in myth #3. His argument here also sounds strangely eugenicist, with his references to allowing a "weakening." Just as he began this "myth" with a hand wave at the millions of children who die every year from vaccine-preventable disease, he wraps up with a hint of "let them die so that human immunity can remain strong," an argument both fallacious and scary in its insouciance. He actually says, "How did mankind survive and thrive through thousands and thousands of years without being immunized?" Yep, he went there. In other words, 50% childhood mortality is OK, people, as long as it means we're being "natural." The World of Woo is strangely nonchalant about all that death even as it decries a perceived, Greenfieldian association between neurological differences and vaccination.

Kornfeld closes up this alleged myth by exhorting epidemiologists to look for links between vaccines and childhood "morbidity." Because no one's ever thought of that before.

Alleged Myth 6: The double blind-placebo controlled study guarantees safety and efficacy in drug therapy.
He starts this out with, "At this point in the history of mankind...". Hey, Mr. Holistic, womenkind are people, too. Again, he argues for letting pain and suffering rule over "reaching for medicines," and asserts that somehow, the hundreds of thousands of scientists all over the world researching human disease are not "looking into the mechanisms that may be causing these symptoms." Does the good podiatrist not know about PubMed?

He then goes into an ill-informed screed against double-blind, placebo-controlled trials, which are the gold standard for testing therapies. Are they perfect? No. But they're the best we have. It beats tossing in a little eye of newt and incanting about unicorns around an open fire, I'd say. This woo-filled diatribe against modern medicine, one that kindly included all the anti-vax tropes in one place, wallows in its own irony. Woo types an excoriation of such trials with one hand even as the World of Woo wrings the other hand in horror at the absence of just such studies from vaccine trials (they do exist, of course) and from investigations of autism-vaccine links. World of Woo, you can't reasonably deride the efficacy of these trials and demand them at the same time. Actually, maybe you can.

Kornfeld struggles here to make the scientific process of drug testing look like a failure. But his very example demonstrates the practice of science and how it works. The results of clinical trials are not the be-all and end-all of drug testing. The gold standard in the short term may be such trials, but the real gold standard is simply the common practice of science: Changing conclusions as new data come in.

Non-scientists, however, or anti-science polemicists, rely instead on no data whatsoever. This entire Huffington Post piece is an exercise in ignorance and Greenfieldisms. In Kornfeld's world, it's, "I point to something, I point to something else. That's all." And that, my friends, is the real exercise in mythology, the dangerous mythology of the World of Woo.

[Photo via Flickr.]

Autism and type 2 diabetes linked because "both are increasing"?

The news release, posted at ScienceDaily, starts like this:
A review of the genetic and biochemical abnormalities associated with autism reveals a possible link between the widely diagnosed neurological disorder and Type 2 diabetes, another medical disorder on the rise in recent decades.
I hopehopehope that this particular foray into the world of autism research doesn't catch fire in the news media (although I know it will with the two irresistible hot-button health issues involved). Why? Reasons below, with the best saved for last.

This story is about a hypothesis
It's a news release about a hypothesis, one published in the journal Frontiers in Cellular Endocrinology. That's it. It's a hypothesis. No data. No study. I'm not faulting the scientist who proposed it, Michael Stern, but...the news release (see above) opens with words that make it seem as though a link were already a strong possibility.

There are no data
The paper is open access and brief, albeit mind-bendingly complex as, in a Glenn-Beckian way, it unfolds a this-might-be-linked-to-that-if-this-were-the-case map of a hypothesized association between a very common gene-regulatory pathway and autism. There are many issues with this proposed association, which seems to be a haystack in search of a needle.

This pathway is ubiquitous
The pathway, Pi3K/Tor (phosphoinositide-3-kinase/target of rapamycin) and its buddy PTEN are involved in myriad processes from embryonic development to cancer. One of those pathways is insulin signaling, which Stern lays out in a figure in the paper. The problem is, it also is a pathway involved in all kinds of other signaling, one that many growth factors activate. Indeed, it is a high-profile cancer target because of its involvement in cell cycle signaling and growth factor activation. This pathway is present in plants.

The assumed increase correlation is not equivalent
From the news release, quoting Stern:
When I read that the incidence of autism was increasing, and combined that with the fact that the incidence of Type 2 diabetes is also increasing, it seemed reasonable that each increase could have the same ultimate cause -- the increase in hyperinsulinemia in the general population
The apparent genesis of this hypothesis was the coincident rise in type 2 diabetes and rise in autism diagnoses. I'm always wary of taking correlations such as coincident increases in anything and trying to link them. The increase in autism diagnoses has its own explanations, which aren't linked to the explanations for the increase in type 2 diabetes.

The rise in autism diagnoses has been largely (but not completely) attributed to changes in diagnostic parameters and shifts in diagnosis from intellectually disability and other differences to autism. The increase in type 2 diabetes, however, is a different story. According to the CDC, the only statistically significant increase in Type 2 diabetes prevalence among children has occurred among American Indian populations (yes, that surprises me, too, and if anyone's got other data, let me know). What's genuinely on the rise is childhood obesity, which is strongly associated with type 2 diabetes in children, again according to the CDC. In addition, there is an ethnic component to type 2 diabetes prevalences in children (highest among American Indians), but there is not such a component among autism prevalences, although there are disparities in autism diagnosis among ethnic groups.

The hypothesis is not parsimonious
Nevertheless, struck by this coincidence, Stern linked the fact that insulin signals through the common Pi3K-Tor signaling pathway to both the increase in diabetes and the increase in autism. His hypothesis is that the increases may have this pathway in common, leading in both cases to a commonality of impaired glucose tolerance and hyperinsulinemia. His rationale is that some genetic disorders that are associated with higher risk of autism--tuberous sclerosis, neurofibromatosis--are linked to PTEN and a couple of other genes that are the code for proteins that inhibit the Pi3K-Tor pathway. He suggests in the news release that clinicians could test the idea by placing autistic children on low-carb diets to "minimize insulin secretion" and see if their symptoms improve. This has been done, although not for that reason. Perhaps someone should finally consult DAN! doctors for some data.

His rationale continues as follows:
One effect of PI3K/Tor activity is increased mRNA translation, which is mediated by activation of the translation initiation activator eIF-4E. This observation is of interest because a fourth disease gene that increases the frequency of autism, Fragile X, encodes a translational inhibitor that might oppose the effects of eIF-4E (Brown et al., 1982; see Figure 1). Thus, mutations in any of these four genes both increase mRNA translation and increase the incidence of autism.
Translated, that means that of the many pathways involving Pi3K/Tor, there is a handful of molecules that also are involved in these genetic disorders that are also associated with a greater risk of co-morbid autism. I'd quibble with the assertion that the genes themselves "increase the incidence of autism." This pathway, I'll just note again, is so ubiquitous that there has been an entire conference devoted to it. As much as I am a fan of mechanisms and even of this pathway, I'd hazard that there are more targeted, less general signaling molecules to go after. In other words, more obvious needles that this haystack doesn't obscure.

Stern notes in the paper that gestational diabetes (GD) has been linked to autism (in a meta-analysis although it also has now been linked in another study that found a slightly lower than 2x risk) but that no explanation is available to explain the link. However, GD often leads to high-birthweight babies, and the same meta-analysis found no association between higher birthweight and autism. GD is associated with many adverse outcomes, including birth defects involving the brain and heart, so there may be a general influence here that is not specific to autism.

Is it worth investigating further?
Stern's paper goes on to a carefully constructed mechanistic rationale that reminded me, as I read it, of a delicate house of cards. If then, then that, and then if that, then this. The one thing that seems to be missing is a discussion of the co-morbidity of autism and type 2 diabetes. I would infer that if one pathway and metabolic disturbance was the mechanistic explanation for both, then they would overlap considerably. In fact, nothing in the hypothesis is specific to autism itself but instead focuses on disorders that also carry a greater risk of co-occurring autism.

Is this hypothesis worth investigating further? Who can really answer that question? Autism remains a mystery of mysteries that pulls in people from all walks of life, science, and writing, and it may be that it takes some odd, left-field eureka moment to nail down some piece of the enigma. I'm skeptical that there will be a "eureka!" though, and think that it will continue to be the painstaking process of multiple discoveries involving several pathways that it already has been. The papers Stern references relative to the insulin-related pathway talk about "savant" skills and "cognitive impairment," neither of which is specific to autism or necessarily characteristic of autism. Throughout, the emphasis is on genes related to disorders that are often co-occurrent with autism, rather than autism itself.

The headline on the news release is misleading
But this blog isn't only about science. It's about science and the news media and the audience. And I don't fault the science or the Rube Goldbergian reasoning that got autism and diabetes linked nearly as much I fault this headline from the news release:

Common Link Suggested Between Autism and Diabetes: Study Implicates Hyperinsulinemia in Increased Incidence of Autism

This wasn't a study. Period. It was an "Opinion Article," which the journal describes as follows:
Opinion Articles allow researchers to publish an opinion on the interpretation of facts, value of methods used, weaknesses and strengths of any scientific theory or on any topic relevant to the field of research. Opinion Articles allow maximum freedom of expression for researchers and are peer-reviewed.
Yet, outlets have already picked up this news release wholesale and are echoing what the headline implies, that, to quote one of them, " A new study has revealed a possible link between autism and type 2 diabetes" or the lede of another (that then continues almost verbatim from the news release), "Emerging research suggests a possible link between autism and Type 2 diabetes." That, my friends, is a fault of science communication.

Update: Sullivan, over at Left Brain/Right Brain, has found a video release related to this news release related to this paper. In his words, the video "goes further into overplaying this story." I agree.

The meaning of words for scientists and the public: context matters

You may have seen the above table (Table 1) making the rounds. I saw it last week--someone sent it to me via email--and have been pondering it since. The underlying assumption seems to be that context for a reader is irrelevant, that words have different meanings for different populations, regardless of context. Some writers have taken the table to heart and used it as an example of how not to write about science. Other writers, like Alice Bell, have viewed it with more skepticism.

It's been described as representative of humanity's most tragic miscommunications. I think it might be an example of our lapse in educating the populace generally, rather than having to do with a tragic miscommunication about science. General education considerations aside, however, my hypothesis is that the table neglects the concept that context matters. The table itself is an example. When I wrote the previous sentence, was I speaking of a table on which one dines, or a table related to something scientific?

Context matters.

I hypothesized that people reading these terms might view them differently between encountering them in a general context and encountering them in a scientific context. One of the assumptions of my hypothesis is that people who are reading these words know the context, i.e., they know that they are reading something related to science.

Materials and Methods
To test my idea, I recruited participants into the study. The n is very small, for which I apologize, as I have only two children whom I homeschool. The average age of this population is 9.5 y (one is 10, one is 9). The sex distribution is horribly skewed, as they are both male. For that, you will have to blame the person with the Y chromosome, who I am not. The participants are physically healthy but do have some learning deficits and atypical neurology. In other words, they are my children.

As a first test in this carefully designed study, I simply went down the list of words in the far-left column of the table and asked my research group to tell me what they mean. They had no idea why I was asking and probably thought it was just another one of my weird vocabulary exercises.

As the second test, I considered then asking them each word but to give me the meaning as though they were reading the word in the context of science, but they were getting restless and in keeping with good ethical practices, I didn't want to be too invasive with my intervention. So, instead, I told them to imagine that they were reading each term in a news story about science and to choose which of the two definitions offered in columns 2 and 3 would be the likelier meaning in such a piece.

Below are their responses to the first question (Table 2):

Here are their responses to the second question (Table 3):

As tables 2 and 3 here demonstrate, the study group (n=2) initially applied what I would call a science-related definition to 5 of 13 of the terms, even without a scientific context (Table 2). When aware of the scientific context and given a choice of definitions, they selected the scientific interpretation 11 out of 13 times.

Discussion and Conclusions
The results indicate that this participant group adjusted their understanding of specific terminology based on the context. The limitations of the study are numerous, including the limited sample size and the fact that another test asking the terms in a scientific context without providing an option for definitions might have been illuminating, as well.

These participants have an average grade level of about 7th grade in reading. The usual advice for writers is to keep terminology at about the 8th grade level, although when I run science-related MSM pieces through various reading-level calculators, I often find that they are more at the 10th-12th grade levels (personal observation).

Nevertheless, as Table 2 shows, this participant group had a reasonably scientific interpretation of 38.5% of the terms even without an understanding of a scientific context. With the added context of a scientific news article, their scientific interpretation of the terms increased to 84.6%.

I note that the two terms that the participants did not define scientifically were theory and error. Oddly enough, they defined "theory" scientifically outside of the scientific context but reversed it to a non-scientific interpretation within the scientific context. I speculate that this result is attributable to a failure on the part of their science instructor, who will be making amends for it as soon as this blog post is complete. Regarding "error," I suggest that this term and the term "manipulation" are the best candidates for confusion for a non-expert audience, and that the latter term should never appear anywhere, at any time, in relation to data.

In conclusion, as the tables (in a data presentation context) indicate, context matters and perhaps the science-interested audience isn't quite as dumb as some think.

Autism and low birthweight: study--and quote--limitations

Which headline would you choose?
The story's out there: autism and low birth weight linked. But the headlines and reportage vary considerably. The usual conflict of interest is at work here: If you're a science writer interested in accuracy about the research, your headline might look like this:

If you're a headline writer hoping to write eyeball magnets that unremittingly lead to mouse clicks, then the headline might look like this:

Or this, which takes it a step further

Which one would you click on, if you were (a) pregnant, (b) parent or relative of a low-birthweight baby, or (c) just generally curious? I think we all know the answer.

But the only headline--and indeed, the only story--that accurately reflects and presents the study's findings is the first one. The study itself, published in Pediatrics, is not open access, but you can find the abstract here.

Study background
The report in question is of a long-term (longitudinal in science lingo) study that followed low-birthweight infants from birth through age 21, all born between 1984 and 1989. The cohort was "periodically assessed" over the years. Screenings when the cohort members were 16 turned up almost 19% who screened positive for an autism spectrum disorder (ASD). Of these 117 teens, 40% were not available for assessment at age 21, the assessment used in the current study. The remaining 70 were assessed, and 16% (11 individuals) found to have ASD.

The researchers also had about 81% of their original cohort who did not screen positive for ASD at age 16. They "selected" 23.5% of them (119) for assessment at age 21. Three of these, who had not been identified as having an ASD at age 16, were identified as having one at age 21. The final total of individuals who screened positive for an ASD at age 21 was 14. From their data, the researchers extrapolated an ASD rate among the low-birthweight population of about 5%.

Is it five times or two times the general population?
First, I'll point out that the study doesn't focus on gestational period but on birthweight, targeting people who were born weighing 4.5 lbs or less. There is not an indication that prematurity was used as a parameter, and references to prematurity, while intuitive, are not an actual reflection of this study. Prematurity and autism have been linked already.

The Big Find of this study is supposed to be that the authors identified a rate of autism of 5%, about five times the 0.9% or so estimated for the general population regardless of birthweight. But the Big Issue with the study is that the authors assessed the targeted population of low-birthweight people using autism assessments that typically aren't administered willy-nilly to the general population. In other words, they took a number, 0.9%, derived from the general population of people who are not all specifically tested for autism and used that as a measure against a specific population of people all of whom were specifically tested for autism.

It's entirely possible--and a study from Korea bears this out--that estimates for the general population are low. The Korean study, which did involve directly testing a very large segment of the general population (about 55,000 children) identified an autism rate of 2.6%. In other words, based on that rate, autism among very low-birthweight children is about twice that of the general population. Instead of using this very recent Korean data, however, the authors use data from the Centers for Disease Control from 2006, presumably with the rationale that those data would best reflect the US-based cohort for their study.

The study's lead author has been quoted as saying that she thought the rate would be "about double," rather than five times. She may have been right about that.

Is it autism or ADHD or...?
A total of 14 people in this study screened positive for ASD, three of them who originally screened negative for it at age 21. What has gone largely unreported--and unheadlined and uncommented--is the fact that almost half of this group--six people--had "co-morbidities," other disorders such as ADHD or phobias. The symptom crossover among these diagnoses is significant.

A problem with quotes
The description of autism is always an issue in the news media. While we've certainly begun moving away from using words like "disease" or "tragic," descriptives still prevail that don't fit with the personal experiences of autistic people or family and friends of autistic people. It's hard in a news story to get across the nuance of a developmental difference. Indeed, it took longform writing for Amy Harmon to convey it in her excellent NYT piece about a man with mid-intensity autism. So, I understand when the news media resorts to shorthand to discuss ASDs. What I'm starting to wonder about is the researchers involved in ASD studies.

Conflict of interest statement: I am a non-neurotypical parent of non-neurotypical children, one of whom has a diagnosis of autism and another of whom has a diagnosis of "provisional" Asperger's. My personal experience with autism means that I take quotes like the following quite personally:
Those with mild autism spectrum disorders, such as people with Asperger's syndrome, "may only want to talk about one subject," Pinto-Martin said. "They're perfectly functional. They can go to college. They can hold a job."
Or this one:
Lower functioning people with autism spectrum disorders may have no social interactions at all. "You may see them sitting in a corner, rocking back and forth," Pinto-Martin said.
In autism communities, using phrases like "low-functioning" and "high-functioning" is very controversial, and they are considered to be loaded terms. High and low function depend entirely on context; for example, I'm probably pretty low functioning when it comes to communicating in Chinese, but my level of functioning in English is pretty high. How well I function with either form of communication depends entirely on who my interlocutor is.

People seem to have a perception about Asperger's that the news media--and shows like Glee--probably perpetuate. It comes across as almost quaint, a quirky little thing to have that's adorably absent-minded professory, reminiscent of the Leary family in The Accidental Tourist, perhaps with a soup├žon of genius mixed in. It's not.

Asperger's carries with it deficits in social communication that can lead and have led to emotional and physical torture of Aspies in childhood and, despite the assertion in the quote above about jobs, difficulties in later life both in higher education and in job seeking. Their cognition is about average, on average--Aspies are not all walking geniuses in mismatched socks--yet underlying that averageness in all social interaction contexts is a hidden, exhausting struggle for control of the senses and the hard work of trying to achieve some semblance of "norm" in the interaction. That perceived "function" for an Aspie represents the intensely difficult work of overcoming a disability to accommodate the expectations of society.

Regarding the quote about "lower-functioning" autistics, I say it again: Behavior is communication. Rocking back and forth is a communication. It self soothes, from which anyone should be able to infer that the rocker is feeling anxiety. But that quote, that vision of "lower-functioning" autistics sitting in a corner, never interacting socially? I invite people to the reality of the intensely autistic by visiting here and here, as a start. Intensely autistic people do communicate, sometimes even in ways that non-autistic people with no experience outside their own norm can understand.

The quotee in that article is the lead author of the study, Jennifer Pinto-Martin. She also references premature babies in the piece, although the paper's focus was low birthweight, not specifically prematurity (extreme prematurity has already been associated with autism). In the article, she speculates that the medical advances that keep premature infants alive may be "contributing to the increased prevalence of autism." Of course, it could also be a million other things, from the causative agent in an early birth to agents we've tried to use to prevent early birth. What is unclear is whether or not she refers to the prevalence reported in the study, or if she's referring to an overall increase, the explanations for which remain controversial.

Pinto-Martin says that the next step is to follow up on a hypothesis that brain injury at birth may play a role in an autism diagnosis. The MSNBC piece is a little confusing because it states that brain ultrasounds are "now common" in premature babies, but it's unclear if they were common for this particular birth cohort, born in the 1980s. According to Pinto-Martin, her group will now check records of brain hemorrhage or injury data in the cohort to look for associations.

I close with two quotes, the first from an outside expert, Craig Erickson of the Indiana School of Medicine, quoted in the MSNBC piece. Referencing the longitudinal nature of the study, he says, "By [21 years of age], you really know if people have autism or not." Most parents notice differences before a child is two years old. It is odd that three of the cohort were not identified as having an ASD at age 16 but were identified as having one at age 21.

The final quote is one from Dorothy Bishop, professor of developmental neuropsychology at Oxford University. The quote first appeared in the BBC News, but I found it here. Bishop notes:
The association looks real, but nevertheless, most low birthweight children don't have autism, and most children with autism don't have low birth weight.
[Image credit: U.S. Navy, via Flickr.]

Autistic people: insensitive to social reputation, sure, but what about empathy?

You may have witnessed the observer effect in action if you've ever attended a charity auction. People are watching as bidders compete, either on paper in a silent auction or loudly in a loud auction. The audience observes. The bidders compete. The bids climb, all in the name of charity. But if these folks were sitting alone in their living rooms, pondering how much to donate to the worthy organization, would they be considering an amount as high?

Probably not. Social pressures for donating can be powerful. Your name is there. People are watching. You care about that because you don't want to look bad. You care because you don't want to look stingy or, heaven forfend, poor. You care because you want people to think you care, possibly that you care more than you really do.

Unless you're autistic, according to a recent study. Authors collected 10 people they refer to as "high-functioning" autistic and 11 people considered to be "neurotypical" (NT) and put them head to head in a donation situation in which the recipient was the ever-worthy UNICEF. The authors had participants calculate their level of donation based on how much the participant would lose relative to how much the charity would gain. The participants made their decisions alone and then made decisions with an observer in the room.

With an observer in the room, the NT participants elected to donate significantly more than they did when they were alone. But donations from autistic participants did not change significantly when the observer was present. In fact, when another person was in the room, autistic participants elected to slightly but insignificantly decrease how much they donated to UNICEF.

The researchers ruled out social ignorance about the presence of another person by having all participants complete a continuous performance task with and without another human in the room. Both groups performed better on the task when someone else was observing, indicating that yes, autistic people were certainly aware of the other's presence.

The title of the paper, "Insensitivity to social reputation in autism" (sorry, not open access), speaks the authors' conclusions. They determined that autistic people perceive social reputation to be irrelevant and are immune to social pressures related to "best behaviors" when other people are present. Meanwhile, non-autistic people do seem to care about how others view their socially positive behaviors and want to put their best foot--or donations--forward if others are watching.

I find these conclusions fascinating on many levels. As a social species, we keep each other in line, performing for the good of the community, by keeping an eye on each other, Big Brother Primate style. The mere presence of another member of our species helps to ensure conforming and socially positive behaviors (usually). Of course, if members of our species decide en masse to engage in negative behaviors, that also seems to give the go-ahead for joining in, dropping individuality and having a riotous free-for-all. After all, everyone's doing it, right?

But autistic people--at least the ones in this study--are the nonconformists. They honestly donate what they think is appropriate to donate whether someone is watching or not. They were aware of the other person--even driven to perform better on a task when someone was present--but didn't feel the social pressure to show off their socially positive behaviors by enhancing their generosity for the benefit of the audience.

I was on board with how the authors described their findings and how they set up the study. The group was small, but the design seemed clean, including a questionnaire to ascertain whether the groups differed in their perceptions of the worthiness of UNICEF (they did not) or in their perceptions of the importance of donating (they did not). But then, I waded into the discussion of the paper and found myself face to face with the following question and statement:
Might people with ASD be immune to observer effects simply because they have less empathy for others (less intrinsic motivation to help others)?...It has been well established that ASD features reduced empathy...
Observations like these always make me wonder if investigators have ever lived with anyone with autism, ever spent enough time with them, day in and day out. The question of empathy and autism is extremely controversial to autistic people, who find it offensive that people say, offhandedly, that they lack empathy. Almost all of the work suggesting that autistic people lack empathy arises from the research of Simon Baron-Cohen (SBC) (yes, Sacha is a distant cousin). In fact, studies that aren't from the SBC research group typically rely, as the current study did, on the Simon Baron-Cohen Empathy Quotient value to determine whether or not an autistic person exhibits empathy. In other words, the only work reporting that autistic people lack empathy arises from a value for a scale developed by someone who's determined that autistic people lack empathy.

SBC has taken the time to engage on this subject with the autism community, but not to their satisfaction. I think he's wrong in the parameters he builds around empathy and his conclusion that autistic people lack it. My experience, and one that many others in the autism community voice, is that autistic people may lack the detection skills to read a face or body language and determine feelings and attitudes from them, but once they're aware of someone's feelings--happiness, anguish, anxiety, hope, fear--they feel them too much. Far more than the average "NT" person.

Thus, to see repeated again, in the current paper, that it is "well established that ASD features reduced empathy" sets me to headdesking so hard I may have suffered a subdural hematoma. And not only because I think researchers are wrong in their tautogically based insistence that autistic people lack empathy. It's also because a certain irony appears to have escaped them.

The irony is in asserting that autistic people lack empathy when--and stay with me here--the "NT" people in this study didn't rely on their own feelings for the "other" to determine their donations. Instead, they relied on whether or not someone was watching them. Their level of donation didn't come from how strongly they felt or sympathized with the "other" (in this case, UNICEF). Nope. Social pressure, the knowledge of being watched and judged, the desire for presenting as personally generous--those are the emotions that drove their level of donation. Whose empathy is the less self-involved here?

This "no empathy in autism" meme requires more critical evaluation. Is empathy specifically the power to detect via typical social cues how the "other" feels? Or is it being able to feel strongly on their behalf once you know what their feelings are? Could it be that autistic people are too little assailed by personal social attention to themselves--such as someone watching them engage in social behavior--to care whether or not that person is judging them, but still perfectly capable of engaging in shared feelings on behalf of and in support of another human being?

Photo credit: Silent auction boosts charity donation. Northwest Air Ambulance, via Flickr.

Reference: Izuma et al. PNAS. Insensitivity to social reputation in autism. 2011. doi:10.1073/pnas.1107038108