Field of Science

Don't like labels? How inhuman of you

Just a few ingredients that might be on the label for the average human.
Via Wikimedia Commons.
Humans like to classify things so much that we've got entire disciplines and subdisciplines devoted to the practice. Labeling helps us in any number of ways, from communicating in shorthand--a term that itself is a label based in a now-lost art--to corralling ideas or people or things or regions in ways general (white people) to specific (Homo sapiens). We like to categorize, and we start doing it in infancy [PDF]. 

But our relationship with labels is one of love alloyed with hate. As much as we use labels--words themselves are labels--for everything around us, within us, and about us--we also despise them. One google search on the phrase "I don't like labels" in quotes tells you as much. It seems that most of us have a little of that maverick in us--speaking of maverick, that started out as a label for the unlabeled--to want to break free of whatever labels we bear. We also have some understanding that no matter how hard we try to pigeonhole (which once literally meant a hole for pigeons) people, places, and things, nature has a way of spreading beyond those confines and expressing the uniqueness of the whole, if not of the parts.

A label is, in essence, of a reflection of assumed properties. If I label myself as female, most people will automatically assume that I have a number of associated physical and chemical properties typically accompany that label. I could say I'm an "ovary-bearing, monthly cycling human being with breasts, a uterus, and a vagina," but really, "female" tends to encompass all that.

Except. As many people know, females don't all have ovaries. Many don't cycle monthly. Some never have breasts, some lose them in transit. Ditto the uterus, sometimes even the vagina. On occasion, a female acquires a vagina as part of becoming female. Does that mean that the label "female" no longer applies? No. But it does illustrate how the shorthand of the label can belie some aspects of its reality while still being generally accurate and useful. 

And sometimes, the meaning of a label changes. Only a couple of hundred years ago, telling someone they were "nice" meant labeling them as a bit overly fussy or precise in their needs. Today, it means they're kind or pleasant. Meanings and relevance change.

These changes and the malleability of labels and their boundaries can make us think that labels, in the end, are meaningless. Take the sum of an individual's parts, and you'll find that what emerges from those parts transcends the inherent properties of each part. A single neuron's just a neuron, but from a pack of them interacting with internal messages and the world outside emerges each unique individual. Can we deny, though, that that emergent individual traces back ultimately to those parts, the individual neurons? That's where it starts.

So a label is a starting point. It's the place to begin, from where we work outward, incorporating the variations that expand beyond the label to the individual. Yes, labels tend to dissolve on close examination, allowing us to see past them and into deeper relationships, but that doesn't negate their importance as beginnings or identifiers or shorthand in the wider world.

Think of groups or social circles of which you may be part. Why are you in them? If you're a mother, you may be in some kind of "mom" group. A scientist? In a scientific society related to your discipline. Someone who's battled addiction? You may participate in a group of others with that shared experience. You come together in these groups because of a label--mom, scientist, addicted--and even though each member of the group is an individual, these labels form a shared commonality and produce the emotional glue that built the group and keeps it together.

As a mother myself, I fall under a parental sublabel known as the "special needs parent." My children, because of their identifiable needs, have labels. My oldest son is autistic. That's his label. Is he exactly like all other autistic people? No. And they are not like him. But their commonalities are sufficient to warrant the label. The label itself implies a suite of shared sensory sensitivities, behaviors, and communication deficits. Whatever else my son is--smart, funny, tall, blond, male--he is also these things, and that label applies. 

That label is also useful. For him and for his brother--who has the Tourette's trifecta of ADHD, OCD, and tics, lucky kid--these labels serve any number of positive purposes. I can search them online and find other people whose experiences overlap. I can tweet a question with a hashtagged label and obtain insights from people who have been there, done that. I can find summer camps, therapies, social communication classes, homeschool groups, online groups, blogs, and news stories, all potentially related to my children, thanks to the existence of these labels.

These are only a few of the benefits. Because of the need for a starting point, to receive intervention services in school, a label is required. We no longer receive those because we homeschool, but our oldest son couldn't have received the in-school therapies and aide support he had without his "autism" label as a beginning. It also serves as a shorthand in the wider world, even if that world has yet to fully understand how much each individual expands uniquely beyond the label of "autism" or "ADHD."

Can labels carry negatives? Absolutely. First, there are the backlashes against them. For whatever reason, people who don't have these labels or have any relevance at all see fit to challenge them, sometimes with appalling ignorance (the stupid at that last link burns so hot, you may want to don protective goggles). When a label is particularly pervasive in popular culture, the tendency among the vox populi seems to be to denigrate it, dismiss it, demean it. Is that painful? Sure. Does it make the label any less valid that a few noisy, uninformed people don't "believe" in it? No.

My children are more than their labels. Of course. They each exist as the unique emergent property of the sum of a seemingly infinite number of parts, like every human being does. That doesn't mean, however, that they don't have sufficient basic components in common with some others to duck a label--or make a label irrelevant to them. In the aggregate of groups or communities bound by these commonalities, these labels are deeply meaningful, even as the disparate individuals that emerge from them remain unique. And for that reason alone--that deep meaning, the emotional glue that a label can be, the starting point that takes us in many a useful direction--you'll never find me saying, "I don't like labels." After all, I used 1100+ of them writing this post.

Why does Rush Limbaugh think sex frequency and cost positively correlate?



"She's having so much sex, she can't afford the contraception."

Right there, we learn so much about Rush Limbaugh. Clearly, he thinks that when you have a lot of sex, you must pay for it, so the more you have, the less of other things you can afford. What he doesn't seem to understand is, if you're on the Pill or other hormonal forms of birth control, how much sex you have or don't have doesn't actually affect the cost. In fact, a day after uttering that pronouncement, he is sticking to his strange argument, saying rhetorically about birth control costs: "Well, did you ever think about maybe backing off the amount of sex you have?" See, in Limbaugh's world, sex frequency is linearly associated with money spent. 

Rush Limbaugh is a gasbag who once was detained for having a bottle of prescription Viagra that wasn't prescribed to him. He is a crass misogynist whose day of relevance has faded into a dragging, dusty sunset. He still babbles on the radio, though. You may recall Sandra Fluke, the law student who was not allowed to speak at U.S. House Oversight Committee Chairman Darrell Issa's testes-only party about birth control. She finally got a chance to have her public say, which has led the good Rush Hudson Limbaugh III to go on the radio and request that Fluke provide a sex video in exchange for payment for her birth control. 

Meh. It's Rush Limbaugh, blowhard, loser, Viagra user. You can't have high expectations from that quarter much beyond ineffectual efforts to degrade a woman who is half his age and twice as smart. 

Rush seems to be struggling to make himself relevant after a series of debacles, so he has plumped himself into the middle of our nation's most furious reproductive health struggle in years, demonstrating his ever-weakening grasp of the issues and always limited interest in our nation's women and children by calling Fluke a "slut" and a "prostitute" for arguing for affordable birth control. The problem here isn't, however, our little Babbling Bloviator III. No. It's the political climate that made him think that it was OK to call her a slut and a prostitute and call for a sex video from her in exchange for affordable birth control. In Rush's mind, you see, all things sex related involve exchange of money for services. 

But the climate is disturbing. Obama has stepped in with a call to Fluke showing support. Even Orange Boehner managed a tepid rebuke, calling the remark "inappropriate" but taking that moment to assert that calling a woman a slut and prostitute for lobbying on behalf of affordable reproductive health access equates to fundraising on the fact that Rush Limbaugh called her a slut and a prostitute. I am just positive that the Republicans have never... oh... never mind. Don't hurt yourself there, Speaker Boehner.

See, it's OK to be sensitive about how one obtains one's money. That's acceptable. So, to ensure that we're on the same acceptable level of discourse here, let's examine what exactly the words "slut" and "prostitute" mean.

Slut: "Careless, dirty, slovenly woman" is the first definition I find. Here is Sandra Fluke, finally being allowed to speak after being removed from the infamous Issa hearings:

She looks pretty clean to me. 

What about the second definition of "slut." "A sexually promiscuous woman." See, Limbaugh assumes that Fluke needs birth control because she is having sex with someone, presumably male. She may well be. A woman could be having sex with six someones at once if she wants, and she ought to be able to do that (a) while using appropriate birth control and (b) and not be considered a slut for expressing her sexuality as she sees fit. These issues aside, Rush appears to be unclear about the fact that some forms of birth control serve purposes other than controlling reproduction, including regulating dysregulated cycles, addressing hormonal imbalances and painful periods, or dealing with acne. 

The Great Bloviator seems also to overlook the fact that many many women in monogamous relationships with men--some of these men are their spouses, even--use birth control to avoid having more children. Rush himself has been married four times but has no children. How did he accomplish that? Indeed, when he was busted for having Viagra not prescribed to him, he appears to have been dating the woman who eventually became his fourth wife. Gosh, Rush. What was that Viagra for, you slut?

Moving on to "prostitute." Rush seems to have a bit of an obsession about the exchange of money or value for sex. First definition: "To sell the services of oneself or another for purposes of sexual intercourse or one who does so." While Rush seems to know quite a bit about the workings of the sex service industry, I find nothing hinting that Fluke sells herself for sex. So let's look at the second definition of "prostitute." "To sell oneself, one's artistic or moral integrity, etc. for low or unworthy purposes or a person who does so."  

Let's see. Fluke, it appears, is a third-year law student at Georgetown University. Unless they've changed the way people generally fund their graduate education since I last was involved in that, it's unlikely she's selling her "artistic or moral integrity for low or unworthy purposes," unless you, like Shakespeare, feel negatively about lawyers in general on moral grounds.

How does Rush stand up to that second definition? I think this headline--"Peddling pure hatred has made Rush Limbaugh a rich man"--pretty much sums it up. Rush has some talents--talking for three hours straight ain't easy, you know--and he uses his native cynicism to package it all up for sale to the bidders he knows pay most: the rich people. Apparently, he'll also do it for vacuum cleaners, insurance, flowers, pizza, real estate, and pharmaceuticals. Rush, you busy little prostitute, you. He'd better start saving up though, because it seems that his charms are fading for some of his deep-pocketed sponsors. 

In his infamous commentary conflating birth control, paid sex, and pornography, Rush closes with an offer to buy all the "women at Georgetown University as much aspirin to put between their knees as they want." I've got a better idea. He should buy that aspirin for himself, instead. Cheaper than Viagra, and it doesn't require a prescription. Women, you see, aren't the only people who have an orifice amenable to birth control interventions, although using aspirin does fit better with Rush's perception that the more sex you have, the more you have to pay for it.

Offense taken: autism, emotion, and packs of neurons

Cupcakes are grand, but they are unlikely to drive significant social change.
Via Wikimedia Commons.
I edit scientific papers for a living, some of which overlap with the social sciences and the humanities. Occasionally, I come across quotes that strike at the beating heart of an embodied issue in my life: Autism. I call it "embodied" because in our family, autism isn't something separate from the person who has it. That's not just a whacky, "neurotypical" philosophical stance. It's scientific. Autism isn't an overlay on an individual. If we are a pack of neurons, as Francis Crick so famously described it, then for autistic people, their packet weaves for them behaviors that add up to what we call autism. They are Autism, and Autism is who they are.

At this intersection of philosophy--What am I? Who am I?--and science--I am a pack of neurons that takes in stimuli, processes and integrates them, and issues responses that characterize my entire individuality--sits the nebulous human construct we call "emotion." As much as we consider ourselves to be "rational," the fact is that the influence of hormones and other chemical messengers on our pack of neurons modifies and modulates their intakes and outputs in ways that layer over any basic rational framework we may have.

Sure, we can compute. That computes. But those signals that modify inputs have undergone millennia of evolutionary shaping to facilitate survival. And you know what? Evolution doesn't give a rap whether or not what keeps you alive makes "rational" sense or not. If imagining that unicorns exist keeps someone getting out of bed every morning, and--more important from an evolutionary perspective--perky enough to get back into bed and have sex and reproduce--then evolution doesn't care whether or not unicorns actually exist.

So emotions, with their hazy and vaguely threatening chemical underpinnings and expressions, have a purpose for us. They are a response, a communication, the walloping limbic core in all of us around which we try to wrap the rational bits we're so proud of. Of course, emotion overwhelms almost everything we do, and it's frankly irrational to think that somehow, being rational is going to get the upper hand.

We communicate and respond with emotions, and thanks to FOXP2 and possibly some other genes, we also designate these feelings using spoken and written symbols called "words." Words, of course, are not only symbols for emotion. They evoke things tangible--like trees or rocks or platypi--and intangible--like love, hate, and offense. Because they carry the heavy load of that walloping limbic core that rules us all, whether we admit it or not, words--words, words, words--can land with a crushing force when we don't use them carefully, especially when they evoke or target emotions. Interesting, is it not, that these symbols, concocted themselves from subsymbols on the page, can land with the softest brush of a feather or the hard blow of a hammer and either way, elicit powerful responses that well up through every human physiological pathway into the inchoate manifestations we call "emotions."

Their purpose, these emotions and these words that symbolize them, is multifold. One of those purposes, as I gleaned recently from a paper I was editing, one that intersected philosophy and neuroscience, is that in human society, emotion is a glue. We group together not because of rational processes and agreements but because of shared, deep emotions. How many times have you watched a conflict online only to find that One Voice that expresses an emotion just like your own, a mutual feeling that sometimes even leads to friendship and continued association? How many first dates end just because one party says, "Oh, I love XYZ" and the other party feels exactly the opposite?

But really, how rational is it to end a potential relationship or start a new one simply because you have the same or opposite reaction--that we call emotion--to the same stimuli? But, of course, that's how it works. When you feel a strong emotion and find others who share it with you, the result is a bond, like a couple of shared electrons filling the same need for one another. When others don't share that emotion with you or purposely make clear that they think it's foolish, the outcome is a strong negative response, one we call "offense." The result is decreasing overlaps in the emotional Venn diagrams of our commonalities and differences. Eventually, the overlap may disappear completely so that we become isolated groups, or factions.

I think that most humans probably understand this relationship between offense and expressing disdain or scorning a deeply held emotional belief. It's one reason that so often, when we know we're about to offend, we precede our offense by saying, "No offense." Why say it unless you're aware that you're about to disparage or dismiss a deeply held emotion that the other person feels?

A way around committing this offense is, of course, to try to respect the other person's viewpoint or emotion. To engage in a little perspective taking, putting yourself in their shoes, imagine being them, with their ears, eyes, and pack of neurons. To try to absorb what their lives have been like--what words they've heard that have crushed them, what looks they've received that have suffocated them, what abuse they've experienced for not being "normal," what others have done to them to tap their very spirit dry. If you've done that, then you don't need to predicate anything you have to say with "no offense" because you will know that saying it will offend or not. And if it will, then do not say it.

Why am I writing this? Because our packs of neurons in our family don't translate into what society considers the "typical" packets. We've all struggled. There have been bullies who have--generally, at least, without the intellectually dishonest prelude of "no offense"--left scars both literal and figurative. There is society, the one that thinks my son's Asperger's is a copout for us, his parents, because he was always "picked last for dodgeball" (in our case, presumably, when he was three). There are the very able people out there who don't understand what it means to go through life without daily, incessant, offensive messages from almost every human being they encounter that they suck or can suck it for who they are, for how they are, for what they are.

Because autism, you see, isn't a costume. It isn't a tumor growing inside a person or a malformation that threatens a life. Science says it's a certain kind of pack or packs of neurons, the very core of a human being.

If you have not lived a life like that, one that has been bereft of an emotional glue that groups you with others who feel as you do--then you are privileged indeed. If you are privileged, your humanity demands that you listen to those who are not. When they tell you that words offend or that actions offend--that these things cause them pain--as someone who had the privilege of not living their lives, your humanity obligates you to harken to what they are saying. It obliges you not to demand that they not be offended. I am obligated to listen, to understand, and to act because if I do not, my son will grow into a society that thinks it's OK to belittle him for who he is. Into a world that thinks his autism is somehow a separate skin from his pack of neurons, and that this conception of it makes it OK to mock and deride autism. Him.

Some people don't like conflict. It makes them want to duck away somewhere, out of the volley of words because, yes, words injure and wound and mar. But as I tweeted the other day, big social change doesn't happen over tea and cupcakes and a bit of civil conversation. It's messy, it's emotional, it's painful, and it requires both calm-headed people and fanatics to shift the Overton window of what's within the bounds of social acceptance, of being human.

As much as my emotions overwhelm me, as much as I do take offense that is often intended, I will not shun the conflict. I engage with it, fully. I will always try to put myself in the other person's shoes, taking their perspective and working as hard as I can to be respectful, to not deride, to not use my own emotions against them. Even as I stand by what I think is right, I will work not to offend. If I'm doing my job right as a human being, I've incorporated the other person's perspective sufficiently to understand whether or not I'd offend them. Having done so, I can avoid saying something that deliberately will.

If I do offend, I will apologize. Emotions bind us together, and perhaps one of the strongest emotional glues available for any group is the feeling of resolution. Sincere apologies are the Super Glue of community building. If you bemoan the absence of a community, you might consider starting with saying, "I am sorry." Ali McGraw had it wrong: Love actually means saying "I am sorry" pretty often, and unless you're vying for the title of Oldest Three-Year-Old, you ought to consider it.

This ability to take a perspective on someone else's life, to feel their feelings, to listen to the pain they're expressing--it's called empathy. Can other animals feel empathy? Maybe. But of all the things we, as humans, think highly about ourselves--like our pride in our "rational" minds--the one thing that may distinguish our collective pack of neurons from that of most other animals is that we can articulate that understanding. The question is, Can we also be human enough not to ignore it?
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Happy to share this upshot of a recent contretemps online over attitudes about autism: Evolution of an apology. See the power of "I am sorry"?

So special: Visionary scientist or quack visionary?

Via WikiMedia Commons
I'm a "special needs" parent. What that means is that I've got children who fall into the category, "special needs," needs that extend beyond what people would consider typical for children. In all honesty, I've yet to meet a child or adult who doesn't have some kind of special need, but I suppose that in the aggregate, my children's needs may be more than typically special.

The word "special" is an odd one because it can mean something rather wonderful--"You're so special to me," or something rather snarky-- "Well, isn't that special," or something rather equivocal-- "special needs child." The original meaning of the word in English, it seems, was "better than ordinary," and indeed, to me, my children are better than ordinary and have led me into my life less ordinary. In the 13th century, it came into being to mean "marked off from others with some distinguishing quality." Like I said, I've yet to meet any human being who wasn't, based on that definition, special in some way.

But some of us burn to be more special than others. I yearn, for example, to be a good writer and recognized as such and to teach well. Those are, perhaps, fairly humdrum and common ambitions. Most people have some desire to be special in some way. Even Neurotribes blogger Steve Silberman, one of the best writers alive, has admitted to feeling less than special when writing about synesthesia, the crosslinking of sensory inputs in the brain that gives color to numbers or taste to sound. As Steve writes, "for a drearily mono-sensory person like me, it's tough to read these accounts without feeling a (sour-apple green) twinge of envy." The greats among us still want to feel "special," you see.

And then there are those among us who desire another form of special, the kind that approaches what Freud might have called a "complex." Within this complex may be a genuine desire to do good in the world, but that desire lies wrapped within layers of self-investment and self-perception as a crusader or seer. One of the most common expressions of that specialness I've seen is the belief that the special person has powers of insight that others do not.

People express this specialness of insight as physicians, as parents, as teachers, as therapists, as polemicists, as politicians, as religious leaders and martyrs. And when someone expresses that specialness of insight, takes it on crusade and self-identifies as a Special One, a seer, some of us have a similar response. Because of our tendency to want that sort of magical ability in others if not in ourselves--perhaps with a twinge of that "green-apple envy"--many of us will follow that crusader and ascribe to what the Seer sees, even if it's really a whole lot of nothing.

Hanging onto a crusader, to someone who claims specific insight that others don't have, can by association make the hangers-on themselves feel special, to feel like visionaries who see what's better than ordinary in the Special One before anyone else does. That fervent needs drives these pockets of devotees, and their need to be special--to see what others do not--feeds the growing ego of the focus of their crusade. It's a playground taunt of "I know something you don't know" writ larger and with greater effect.

This need to be special--to have insight into the intangible, to predict the future based on the present's flotsam--this need drives both the followers and the followed. Some of us are happy with what our eyes tell us, with what evidence shows, with waiting until data or verdicts are in. For others, though, that desire to be special in that visionary way brings a feeling of "better than ordinary" that satiates that very human urge.

When we face a mystery, a mystery like autism, for example, that craving to be the Special One, the one who puts a finger on the core of the mystery and exposes it, has led to some of the most wasteful, anti-science crusades in modern medical history. The movement has its visionary martyrs, its visionary followers, the people who are convinced that they see what no one else--not the legions of scientists, doctors, therapists, autistic people, or parents--have seen. If a Special One uses the slightest trace of a clue to construct a signpost, those who yearn to stand out for their special insights will march dutifully down the path it indicates. That road, unfortunately, leads to wasted dollars on a cottage industry of quackery, public health nightmares, deaths from preventable illnesses, erosion of public trust in science and medicine, and divisions within communities that, by all other measures, ought to be united.

A few weeks ago, I devised a checklist of 10 questions to ask when assessing whether or not something passes the "real science" test. I should have included in that checklist that it's important to watch out for anyone who makes unusual claims to insights that others don't have, to knowledge that only they've been able to access, to a pattern that only they've visualized because of their special powers and ways of seeing. These people are not relying on shining light on their evidence or exposing their ideas to the critical and often clarifying insights of others. They're relying on their alleged power as seers--as someone special--to sell you something.

Do real visionaries in science and medicine exist? Yes, they do. But they don't invest their vision with an infusion of how special they themselves are. They turn to the not-so-special but ever-important mechanisms for demonstrating the legitimacy of their vision, to add tangibility and weight to what their insights tell them, to open their ideas to critique instead of making fantastic, unsupported claims.

In doing that, they themselves are special. Why? Because the difference between a visionary scientist and a quack visionary is taking the focus to the evidence instead of to yourself. And that, my friends, is something special.

Men should just shove aspirin up their urethras

Aspirin goes here. 
Can I just say "thank you" to the GOP for reminding me in the last few weeks how very, very little some men think of women? I'd gotten pretty comfortable there, walking here and there with my ovaries and uterus, brazenly exposing my ankles and even sometimes my knees to the light, boldly driving around alone, my head uncovered and my torso uncorseted. Thinking, like a fool, that I am, here in 2012, a fully 100% citizen and human being in this great nation of ours, someone on par with people who have penises and testes, perhaps some hair on their chests. You know, someone whose full control over her body and her mind is never in question, whose choices about when to have sex and with whom are her own, whose choices about when to bear children and when not to are her own, whose right to have a violation of her body considered a criminal offense is a right retained.

Instead, here we are. When I look around at what's happening today, I feel that so little time has passed since I was born more than 40 years ago or, hell, since my great-grandmother was born in 1898. I could enumerate here the way assaults on the person of women, on their wombs and their vaginas and their rights and their personhood, feel here in 2012. But that's being done all over the Web as each little GOP mole pops up, says something straight out of 1850, and then steps aside for the next little mole.

I'd like to play a little game with you, instead. In the spirit of adventure, let's pretend that all of the shit people are doing against women in just the last week alone instead is being done against men. Here we go.

1. If a man joins the army and is raped, he should just expect that. I mean, damn. He's got an asshole, doesn't he?

2. If a man contributes to the formation of a zygote and then determines for myriad very personal reasons that having a child is not a rational decision at this time and chooses to terminate a pregnancy, he must have a six-inch wand shoved up his ass before the termination for no medically indicated reason. Oh, and then be told that this decision is a "lifestyle choice," because bringing a new human being into the world is a "lifestyle."

3. If a man wants to have birth control so that he doesn't find himself in the above situation, if he works for any entity that has anything whatsoever to do with a Catholic god, he must pay for that birth control himself because religious freedom, not personal freedom, takes precedence here and whatever a religion wants to do, it can. Given the prohibitions against all forms of sodomy, I guess that prostate exams also are out.

4. If a bullying congresswoman uses her power to discuss "religious freedom" in the context of birth control provision, in particular regarding condom use and vasectomies, she will have only women at the congressional hearing to discuss it and force out any man on the docket to speak. Some of the women who are allowed to speak will be nuns.

5. If a man wants to avoid contributing to the formation of a zygote, all he has to do is shove an aspirin up his urethra. That keeps things from coming out of it, you see.

There. Wasn't that fun? That's how it feels to be a woman, here, today, in 2012 in the United States of America. Great, isn't it?

Writing about disability: No science, no disabled point of view? No good


Image via WikiMedia Commons. Originally posted to Flickr.

A flurry of articles has emerged in the last few weeks in which mental health professionals voice opinions about developmental disorders without providing scientific evidence to support them. Opinion is fine, except that these articles deliver it as gospel straight from the expert's mouth while not providing an iota of scientific findings as a basis. Because the opinions relate to a developmental disorder in children, these writings carry not only the great weight of being vague and unsupported, but they also carry the even greater weight of damaging real people with real developmental disorders. 

In these articles--one in the New York Times and authored by a psychiatrist and the other at the Daily Beast and quoting a handful of mental health practitioners--the tone is that people with an Asperger’s diagnosis are just quirky folk who don’t have anything sufficiently disabling to be considered to have a disorder. The misunderstanding of diagnostic criteria or even of what Asperger’s actually is makes both of these pieces worthless in terms of information. The fact that neither of them quotes a person with Asperger’s or the parent of a child with Asperger’s means that all the reader gets from them is the bias of the writer. 

Each piece works hard, using generalizations and misinterpretations, to make sure that the public will perceive any human being walking around right now with an Asperger’s diagnosis as a diagnostic fraud who is undeserving of supports of any kind, who is simply odd or quirky and taking advantage of a "diagnosis du jour." In other words, these articles with their clear bias and their lack of factual information do very real harm to real people who really have a developmental disorder. And that pisses me off because one of those people is my son.

In the Daily Beast article, writer Casey Schwartz provides us with a master class in using generalizations without specifics to back them up. The article opens by saying about Asperger's that "no one has been able to agree on what it is." That's odd because there's this book, a manual really, called The Diagnostic and Statistical Manual of Mental Disorders IV-Text Revision (DSM-IV-TR), that explicitly lays out what Asperger's Disorder is. It lists the criteria that a person must meet for the diagnosis. Why the profession whose manual this is can't agree on it escapes me, but then I don't see any evidence in this article supporting the assertion that "no one has been able to agree on what it is," although it seems to contain evidence that at least two diagnosticians can't agree on what it isn't. 

The writer quotes Lorna Wing as saying that Asperger's kids are "active but odd." I can't tell why that quote is in there. What does it tell you about Asperger's, its alleged overdiagnosis, the diagnostic confusion around it? Nothing.

Then this kicker: "They don't have the language or cognitive impairments seen in autistic disorder." See, this is when doing a little research can help a lot. That statement is simply untrue. The diagnostic criteria for Asperger's are that there should be no language delay. Children with Asperger's have been identified as having problems with receptive language, the form of language that you hear and then process so that you understand the meaning of the words the other person is saying. You can see, yes, how that deficit might be important in social interaction, how it's not just "quirky" to have a processing problem in the context of interpreting spoken language. 

Schwartz then goes on to say that people with Asperger's have a "social handicap." Here, I refer the writer to the National Center on Disability and Journalism's Website, which parses the use of appropriate and inappropriate terms when writing about disability, including the word "handicap." Pro-tip: If you're going to write about disability, don't use the word "handicap." I can't stop there because in the next phrase, she writes, "the inability to relate normally to others." 'Nother pro-tip: Don't talk about normal. There is no such thing as "normal." "Typical" is the appropriate term here if one must be used.

And lo, another generalization: "Many doctors feel that the introduction of Asperger's syndrome enriched clinical thinking..." How many? What is the source for this statement? I don't disagree but isn't it journalism 101 not to generalize, generally?

Following that introductory natter intended to set the stage for how flotsammy and jetsammy an Asperger's diagnosis is, we then move on to...Nazis. Several grafs devoted to hearsay from one person--hearsay that according to the article itself could not be confirmed--about the possibility that Hans Asperger was a Nazi. What that has to do with diagnosing people with a developmental disorder, I'm not clear. 

The fact is that there is no support whatsoever for the rumor and that Asperger in fact may have been just the opposite. A colleague of his, according to the source linked in the previous sentence, stated that Asperger "had a very clear standpoint against the Nazis." Indeed, in his paper, he argued fervently for the social importance of these "little professors" he'd identified, taking a very strong anti-eugenics stance. This information was not hard to find. Why the hinting at "Asperger was a Nazi"? What does that even have to do with the developmental disorder itself? 

At this point, we are near the end of this article, and what do we have so far? An incorrect characterization of Asperger's, some unsupported generalizations, and the introduction of Nazis for no apparent reason. Has this last invoked Godwin's law? Should we stop there? 

But hark. More generalizations remain. "Many doctors believe Asperger's is significantly overdiagnosed...." In this statement, the writer links to this post at the New York Times, authored by psychiatrist Paul Steinberg. Does he have multiple personality disorder? How is this one guy "many doctors?" Steinberg, in his post, does the same disservice that these "j'accuse diagnosis du jour" screeds always do: They rely on vague accusations, no data, and tar everyone who has that diagnosis as frauds in the public mind. Thanks for that, man.

In his article--which was extraordinarily controversial in the already controversial world of the autism community--Steinberg and his presumed many doctor selves write that, "Social disabilities are not at all trivial, but they become cheapened by the ubiquity of the Asperger diagnosis, and they become miscast when put in the autism spectrum." Ah, er, hem. Isn't a key deficit of autism--any form of autism--the social deficit? Social deficits take up the vast majority of criteria related to diagnosing autistic disorder. How are they miscast when included on the autism spectrum?

Steinberg and his many doctor selves continue on, saying, "These men (with Asperger's) are able to compensate more completely than a truly autistic child or adult whose language deficiencies and cognitive deficits can often put him at a level of functioning in the mentally retarded range." I guess the good doctor (a) hasn't gotten the memo that the phrase is now "intellectually disabled" or that (b) intellectual disability isn't required for an autism diagnosis. According to the CDC, an average of 41% of people with autism also have an intellectual disability, and that value [ETA: meaning the value of 41%] doesn't include people with Asperger's, as intellectual disability excludes that diagnosis. That means the majority of people with autism do not have intellectual disability, whether they have inclusive of people with autistic disorder or Asperger's. In addition, new data are showing that people with autism may test as intellectually disabled on some tests but not on others and that the mode of testing matters

In other words, Steinberg, in addition to insulting specific autistic people he names in his article, also seems to lack an understanding of autistic people in general. 

But let's return to the Daily Beast article. That piece closes with what turns into a puff profile of Bryna Siegel, a child development PhD at my postdoc alma mater, the University of California, San Francisco. Siegel has a...reputation in the autism community. In this piece, she's quoted as saying that she undiagnoses 9 out of 10 of the people who come to her clinic with an Asperger's diagnosis. Really? While studies suggest that the overlap between what has been called high-functioning autism and Asperger's has confused the diagnostic issue, they don't show that people are wrongly diagnosed as being on the spectrum. How is it that 9 of 10 people who show up in Siegel's office aren't misdiagnosed in terms of placement on the spectrum but instead just...aren't on it at all? 

If you went to a doctor and found that this doctor overturned 90% of diagnoses of other practitioners in the field...what would your reaction be? Mine is that this rate of undiagnosis implies a crusade or that practitioners in that area really really suck at what they do and that Dr. Overturn is some kind of medical savior, an oasis in a howling wilderness of local misdiagnosis. Oh, thank God she's there to save us. 

Actually, Siegel lists her specialty as "differential diagnosis of autistic spectrum disorders and linking diagnostic assessment and treatment planning." Not autism spectrum disorder, but differential (as in alternative) diagnosis of autism spectrum disorder. Now that's specialized. No wonder her rates of undiagnosis are 9 out of 10. That's her clientele. Using her experience as an example for poor diagnosis is like using cats as an example of the growing preference for catnip.

It's odd that Siegel has this power, especially in light of recent studies showing that people diagnosed with Asperger's may have distinct structural differences and white and grey matter distributional differences. This diagnosis isn't an exercise in Freudian theory. It's not something that any doctor can giveth and then taketh away. It's a developmental difference that you have or you don't, and I'd argue that given that, there's no good reason (a) for mental health professionals to be involved in its diagnosis at all and that (b) the best diagnosticians for it are developmental pediatricians specialized in addressing developmental disorders.  

I've got to coin a new law for what comes next. This accusation appears so much in these kinds of articles that there really needs to be a name for it. Siegel says:
“I think part of the proliferation of the Asperger’s diagnosis is that if you say that a kid has oppositional defiant disorder, and especially if you say that about a normally intelligent upper-middle-class kid, parents don’t like to use the word 'oppositional' and they don’t like to use the word 'defiant' and they don’t like to use the word 'disorder.' And ‘Asperger’s’ just sounds so much more neutral. It doesn’t have any connotations … It’s a name, it’s not a descriptive term.”
Wow. I'm going to call this Emily's Law. It's the law that if your child has a developmental disorder and you're middle class, eventually someone will accuse you of being in denial about the real nature of your child's problem, which boils down to either your bad parenting or oppositional defiant disorder (ODD). By the way, if you look at the diagnostic criteria for ODD, you'll wonder how any practitioner who can read would ever conflate it with autism of any kind. My son never showed any of these behaviors before being diagnosed with Asperger's at age 3...or after, for that matter.

Another mental heath professional quoted in the piece, Pete Szatmari, says he undiagnoses 50% of the people he sees. So he and Siegel are even separated from one another in their diagnostic (undiagnostic?) rates by 40%. 

In the Daily Beast beast, Siegel describes the flood of calls that came to her office after Wired magazine published an Asperger's questionnaire. She says that she told her intake coordinator, "If they leave you the number of their secretary to call back, do not call them back." Funny. I don't remember reading anything in the DMS-IV-TR criteria about "having a secretary" as being an exclusion criterion. Does she include these people she ignored as part of her "undiagnosis" rates?

And my take-home from that comment--were I to buy it--would be that any hope we have for our son to be successful is a false hope. After all, based on this comment, he either has Asperger’s and never would be successful enough to have an administrative assistant (never mind that people with executive function skills, like, you know, administrative assistants may be the perfect complement to people like my son) or he doesn’t have Asperger’s and deserves to be blackened with the same dismissive “you’re just quirky and whiny” brush that these pieces seek to tar all Aspies with.

Given that Siegel and Szatmari can't even agree on their undiagnosis rates, looks to me like these folks need to stop blaming people with a developmental difference for having the temerity to have it and look to their own profession for how badly and inconsistently it is practiced or unpracticed. If members of their profession can't apply criteria consistently, does the fault actually lie in the criteria--or in the profession? And if they're so hopeless at the entire process, at using that doorstop of a manual provided as guidance, why should we trust them to rewrite that manual, to write trustworthy articles about diagnosis, to serve as reliable sources in any way? 

But how bad is it in the profession, I ask? Where are the published data showing that 9 out of 10 or 5 out of 10 or any children are misdiagnosed with Asperger’s and shouldn't be diagnosed on the spectrum at all? Indeed, the literature I find points to people with Asperger's as being misdiagnosed with other, non-spectrum disorders when their real diagnosis is Asperger's or just being diagnosed as somewhere else on the spectrum. There also are tested scales that also help in refining and distinguishing the diagnosis--the DSM-IV criteria aren't the only tool.

Without those data demonstrating the claims, articles like these do only harm. How? Children like my son, who has the Asperger’s diagnosis--and who also has receptive language problems, learning differences, stereotyped behaviors, fixations on acorns, patterned grimaces, echolalia, motor delays, and flaps--gets packaged in the public mind with these vague accusations of fakery. He is not faking it. His autism has been with him since birth. A professional referred him. We did not “seek a diagnosis.” He was, appropriately I think, considering the disarray among people whose professional designations begin with “psych,” diagnosed by a developmental pediatrician, someone with medical training explicitly related to developmental orders.

Finally, I close with the observation that neither one of these pieces presuming that Asperger's is nonexistent fakery managed to include insight from people with Asperger's or parents of people with Asperger's. And here's some anecdata: I've met a lot--a lot--of people who are diagnosed with Asperger's. They aren't just "quirky." They have real deficits in motor function, social function, and receptive language function, they have learning disabilities, and they exhibit stereotyped behaviors and unusual fixations. They're clearly people on the spectrum, not just odd or quirky or lovably absent minded. The learning differences that come with Asperger's are very real. The receptive language problems are not just a quirk. The flapping and the echolalia are not just oddities. Just because there's confusion about placement on the spectrum doesn't mean that a person isn't on it.

Finally, you know what I think? (You probably do if you've read this far). I think that when you write an article about disability and diagnosis, it's ableist and inappropriate not to include whenever possible insight from the people who themselves have that disability. And I think that psychiatrists should look to their own house and the biases they bring to it before they start publicly vilifying by association someone who lives in mine.