4/30/2010

Aggghhh. Template changes: Work in Progress

Ok, I like the look of the previous two templates much better. The only thing this has going for it is purple, but I don't want people having to wait for ever to read the content, so I'll be tweaking default templates until I get something I can live with and readers find loads fast enough. So, bear with the changes. Cuz, if ya'll remember the last time, I tweak it and tweak it.
***Updated and tweaked thanks to Socrates' help. Vote in the poll. Shall I leave it be?***

OMG: People Who Make McCarthy Look Well-Informed

I'll be updating as I run across folks who write such incredibly ill informed or conspiracy-mongering things, it simply has to be noted.


Note, we're now up to "hundreds of thousands":
"I found it interesting how the medical community poo-poos the hundreds of thousands of parents of autistic children who watched their children regress post-vaccine. They are not insignificant. They are CASE STUDIES. Personally I have a friend who waited to vaccinate her son until he was age six. Once he received his vaccines he developed autism. No one is going to convince me that was just a fluke or a coincidence." Main Discussion Frontline

Sure, the diseases were already gone:
"The facts show (and you won't hear the vaccine manufacturers say this) that most childhood diseases were either on a significant decline or completely gone from the united states prior to the introduction of many of these vaccines." Main Discussion Frontline


Even better, it's a conspiracy to hide that we're damaging more and more kids; if we do it early, no one will know:
"I honestly believe that the real reason that they stack so many shots in the first year of life is to prevent there from being a baseline. In other words, if they waited until a child is older than three, the child has developed enough to see a personality and have inelligence levels that you can actually measure. Then there would be more definitive proof of a regression or neurological harm, and the vaccine advocates definitely don't want that!" Main Discussion Frontline

All You Needed to Read from McCarthy to Stop Listening

"My concern is not so much about any viruses, honestly, Evan will acquire. My major concern is the fevers that he might get from the regular flu. That is much more common and scary to me, because Evan still has his seizure disorder. The last one was over six hours. We had to put him in a phenobarbital coma for three days in order to make him brain-dead so he wouldn't go into cardiac arrest. To me, the common fever scares me.
I'm not so much concerned about taking him overseas and flying him to certain places. My concern is as scary as a sneeze from someone else. That's due to his injury. So my concern lies elsewhere other than diseases."
-- Frontline interview

On the plus side, we know why AoAers love her; she makes as little sense as they do. Oh, and listening to her answers and comparing her written pieces, well, you know, there's a distinct difference, isn't there? I mean, the written pieces are still wrong, but not nearly as, ummm, wrong (kind wording here) as this interview. Wow. On so many levels, just really, wow.

4/29/2010

Because: flowers I'll share in abundance

Being on the Wrong End of Science Must Really Suck

Age of Autism writers really didn't like the Frontline piece, if you hadn't noticed. I mean, they really hate it when reporters, journalists, people in general listen to their histrionics, take a dispassionate look at the epidemiological studies and follow the science.

You know,  this doesn't lend credibility: "A growing number of parents say that vaccines can cause autism and that more studies need to be done." So what?  They also believe homeopathy is real, the moon landing was fake, that aliens abduct people and probe them, that psychic hotlines are genuine, that 9/11 was a government conspiracy, that a tanning bed is safe (or, if they've been buying what Mercola says, that it's an ideal way to get Vitamin D), that Deepak Chopra is worth over 80 grand a speaking engagement. You getting my point? Sheer numbers of people saying something is real ought to be wholly inadequate for making reasonable people aware of how the brain works believe that proves anything other than how easily people can be made to believe anything at all.

Dachel, unwittingly, does state something, though, that I think we should cherrypick and run with as proof that even hardline AoAers admit the truth: "There’s no need for more research because multiple, large-scale studies from around the world have looked at the question and the answer is no."

They just don't like the truth. It ruins their comfortable narrative that explains the autism and gives them a bad guy to fight against.

Dachel pits her tens of thousands of parents against a few scientists: "Paul Offit, MD, Anthony Fauci, MD and Eric Fombonne, MD declared that regression following vaccinations is mere coincidence."

These scientists aren't declaring this out of nowhere. Remember the sentence just two paragraphs above where Dachel explicitly states that there's no more need for research? Unlike the parents who put together disparate events, declining to link the watching of television, the playing of video games, the happy meals, the bologna sandwich, the being read to, or any of the thousands of other events that occurred between birth and diagnosis to their child's autism (or frak, looking around at themselves, their traits, behaviors, etc), these scientists reviewed the existing literature, looked at the conclusions and followed the science. They did far more than declare it.

It's simply not reasonable for people to ignore the conclusions of scientists. It's not reasonable for people to resort to the threat of violence or violence itself when science disagrees with their belief system. Reasonable people, when it's pointed out with overwhelming science, pull their heads out their backsides, and decide that, geez, the mind, and memory are incredibly malleable, that our biases, heuristics, and need to self justify can all work to really kick us in the ass, and that the best way to avoid getting blindsided by these potential ass-kickers is to look to the science. It saves us from looking like complete dumbasses.

Dachel continues her piece: "I think a better name for the show would have been, 'The Anti-vaccine Movement: Misguided and Dangerous.'”  I'm so glad she agrees. It is. It is both misguided and dangerous. And it is based on an overwhelming ignorance of basic anatomy and physiology of the immune system. You don't get taken seriously by scientists and doctors not trying to cash in on you for a reason.

Age of Autism rarely gets anything right and it fosters a climate of hate and fear-mongering. It is not about finding the facts, getting to the truth, helping any one (well, other than themselves and their sponsors. Buy my MB12 pop please).

Dachel would like to deny this idea that there's crap on the internet (and especially, I am sure, the idea that AoA is part of the problem): "Maybe the answer is that despite the best efforts of health officials and their willing followers in the media, the public isn’t buying it.  Parents are scared.  Autistic children are everywhere in our schools and no one can reasonably explain where they’re all coming from."

Parents are scared because they read the garbage that AoA, TACA, GenRes, and all your followers put out. They're scared because they have woefully inadequate science educations, poor critical thinking skills, and are unaware of basic psychological principles that would help them avoid falling into the traps that the internet helps set. When any fool with internet access can write anything he likes and profit off it, and the masses aren't equipped to recognize woo when they see it, we've got a potent tool for the woo to spread and fear to grow.

I find it really interesting just how many times Dachel writes sentences (total sentences, I'm not cutting them like some would to make it say something else) that are straight out what the science shows: "Parents continue to hang on to the false belief that vaccines can harm children."

Yes, they do and you're helping them. Maybe AoA should stop doing that?

Oh, I see. It's because she really doesn't get it: "Where were the experts on our side?  Why did PBS make it seem that only parents are concerned about vaccine safety?  Did they make any effort to find any of the well-credentialed scientists and doctors who disagree with the main-stream medical community?"

Sears and Gordon are most emphatically not experts. They're doctors with a vested interest in promoting your perspective because they directly profit from promoting that perspective. They get their mug on tv and they sell books. They aren't scientists in addition to being doctors. Oh, and pulling Gordon's little blurb off his Huff page and not putting it in quotes, especially when you're the media editor, for goodness sake. And just because Gordon thinks he's "nationally renowned" doesn't mean he's all that, you know? I mean, look at Lanza's bio on himself over at Huff. So easy to puff one's bio up and it's completely meaningless.

Contrary to Dachel's contention that "these people have everything at stake in this debate," referring to the scientists and medical professionals, there is no reason to create a global conspiracy to hide the cause of autism. Stay off of whale.to and other conspiracy sites, and maybe you'll be able to think more rationally.

Dachel continues to conflate autism and vaccination schedules and insists "The real problem is, AUTISM ISN’T GOING AWAY." Okay, but that has nothing, nothing, nothing, nothing to do with vaccinations. And all the histrionics and all the puffing and conflations in the world aren't going to make them.

And if you're really concerned with helping families and autistic individuals, you get your facts together, you calm yourself down, and you start looking at ways to help the folks here and now have better quality lives.

Age of Autism doesn't do that. No, they scream into their pillows because people don't buy into their disproven ideas on what's responsible for their children's autism.

Dachel doesn't get it. And neither do the other editors of AoA. And unfortunately, today, like every other day, will prove that their intent is to stir up people's emotions, let them post over the top comments, and draw more hits to their sponsors. They continue to prove that they have nothing to do with being a daily newspaper, unless they meant those tabloids you can buy at the checkout counters.

And proving my points, here's the second comment up over there: "The people responsible for funding and producing Vaccine Wars, as well as all of the people who appeared in it making excuses for the current vaccine program, are complicit in genocide." Really? Do you people even know how to define words? Really? I can't imagine why you are scorned or ridiculed.

4/28/2010

Proving Once Again that AoA is the Bastion of Anti-Feminine Screed as Well As Anti-Vaccination Screed

"What's especially funny is that Wallace is "excited" about it. Yes, Virginia, when you deliver the handjob, you get paid. That's how the oldest profession works." --classy commentator at AoA

(work in progress, cuz, they're in rare form today)

Only at AoA, where irony isn't a concept they apparently have even heard of, could people spend so much time attacking female reporters, lambasting them for having been food-related reporters or entertainment reporters (for example) all while promoting a Spanish teacher and Handley as qualified to dissect epidemiological studies or Blaxill as qualified to write on mercury poisoning. Even worse, though, is suggesting or flat out saying that these women are whores for writing pieces supportive of science. It's not just the men who do it, either. Stagliano was mighty darn quick in November with the whole Snyderman under the table providing Offit with well-wishes (although Stagliano was far more crude).

Stagliano, who watched and tweeted through the Frontline piece last night from her bed where, she wrote, she would be able to scream into her pillow while not waking her children (though that piece appears to have gone poof), might avoid all these rages if she'd breathe for a minute and ask herself which is more likely: a global conspiracy against her and other parents who think it's vaccines (even though her youngest isn't vaccinated and she has three on the spectrum) or that there really is no connection, other than the one she and her posse/supporters have concocted. If the only docs you have on your side are woo-nuts trying to sell you products or colonoscopies, you might have yourself a problem. And if you have to sell your point by calling female reporters and doctors whores or relate to them as sex objects, you're acknowledging you've already lost, that you have no facts to back you up. Using a young man with Asperger's to spread the hate speech against women around, that just makes you extra classy.

Here's a tweet from AoA: "And if you believe them, when you child regresses into autism, we will still welcome you, hold your hand and support you. It's what we do."


I guess they mean the vaccine thing. Yeah, here's a tip for you. No, they won't hold your hand. No, they won't support you. Not unless you buy into the skewed and incorrect idea that vaccines did it. Not unless you think that mining chelator is good. Not unless you buy into it all hook, line, and sinker.


Here's another for you: "The Frontline Episode was public health porn. As one sided as we expected. No mention of Bailey Banks, no MDs 4 vax safety."

Lovely. Just lovely.

Umm, Not a Strong Selling Point....



I've driven by this sign for awhile now and it never ceases to amaze me at how some denominations of Christianity think that bringing someone to a belief and a faith in Christ is best done by scaring the shit out of them and telling them that if they don't comply, they're going to fry.

It's not the way to convince folks that Jesus loves them, is what I'm saying. In fact, it rather smacks of an abuser who threatens all hell breaking loose if you don't do his bidding and right the frak now.

Now, certainly people are free to see their creator of the universe as a really pissy old man who has nothing better to do than fry nonbelievers, rather like some kids do with a magnifying glass, a sunny day, and an endless supply of ants.

I, for one, if I were going to believe, and if I were trying to sell a faith, would remind people that you get more flies with honey, and a loving God whose intent is to help mankind get through all the bad shit,  well, that might bring in more customers, you know?

Now, the really funny way to have concluded that sign would not have been with the church's name and address, but with removing the "at" and writing...

When you kick the bucket....or not.

4/27/2010

Increasing Conformity for Positive Social Change: Making Yuppies Follow the Rules

Yeah, so contrary to some folks' ideas that some of us do nothing but blog, it's a busy time for me, at the end of a semester, so I thought I'd bring you a piece written a couple years ago for my graduate social psychology course. Here was the assignment's requirements: provide a "brief description of a situation in which either conformity or obedience can be increased or decreased in order to promote positive social change. Provide at least three specific ways of addressing conformity or obedience in the situation and describe the intended results."

Here you go: how I would make yuppies obey the rules of pick ups and drop offs at their children's schools (please note, that even two years before I began blogging I was happily working to piss people off):

So many different situations relating to increasing conformity occurred to me that choosing one to focus on was challenging. Flippantly, I have to say that one situation where conformity needs to be increased is at my middle child’s elementary school for pickup in the afternoon. Today specifically, on the 99th day of the school year three parents decided to defy the rules and thumb their noses at the fifty parents of kindergarteners (pick-up times vary by ten minutes for each three grades, as do the areas for pick-up, so as to minimize traffic jams) and park in the middle of the driveway blocking the 25 cars each to the left and the right who were either in the drive-up and pick-up lane or in the park-and-walk-across lane. This is not particularly new; many do this as the pick-ups are underway, but to do this 10 minutes before the pick-ups began was quite unusual.

Baron, Byrne, and Branscombe (2006) describe ingratiation as a way to increase conformity and compliance. According to this tactic, if I could somehow manage to plaster a sincere, friendly, oh-wouldn’t-it-be-wonderful smile on my face and casually stroll over to the car of the nose-thumbers and engage them in a conversation that somehow credibly describes my admiration for their eagerness to reclaim their child while appealing to their charity to allow the rest of us to grab our sweet little things and be quickly on our way to maximize our enjoyment of interaction with the little darlings from the comfort of our own homes, perhaps I could successfully appeal to them to park and walk to get their child or to line up like everyone else. The problem would be in conveying an insincere emotion of admiration so that they believed I liked them, I truly liked them. Of course, after today, when I walked by the three cars and made eye contact with each of the cell-phone conversing, multitasking parents as I walked over to get my own child, they might not buy my professed admiration after visually displaying my appreciation of their thoughtful compliance of the rules.

Cialdini and Goldstein (2004) talk about the need for social norms to be “salient” in order for people to attend and conform to the norms (p. 597). Obviously these parents who routinely ignore the rules do not find waiting their turn particularly relevant to them. I get it, I do, they’re busy people who’ve made the time to pick their children up, and they’ve got places to be. Waiting in line is too much of a burden to bear. And I do get it, even though there is, I admit, some facetiousness to my tone. So, in order to get compliance from the parents who park or stop where they have been asked not to, increasing the salience of conforming to the social norms, would seem to be a goal. This school does not seem to hold the same kinds of or frequency of parent nights, and the children are at the beginning of their school career, so sports, band, and drama are not activities being conducted that would lead to parental interaction. In addition, the district is quite large, about 70 square miles, much of it rural, farm country, with suburban developments popping up fairly rapidly, so that there has been rapid growth in the school district over the last five years. As a result, while there are some interconnections between some families due to neighborhood commonality or church membership, for the vast majority of the students, the only common interest held is their child/children attending the same school. It is often not enough to foster as sense of connection or relatedness, and the tendency of most to remain in their vehicle, conversing on a cellphone does not lead to developing relationships with other students’ parents. If I were a school administrator, I would attempt to foster some form of relatedness. Having seen the ineffectiveness of repeated letters home requesting compliance with drop-off and pick-up routines, I would hold a series of meetings for each grade, so that the size of meetings was not overly unwieldy (there are over 700 K through 2nd graders in the school), and I would work at creating a sense of investment by the families in the school, so as to increase the salience of the social norms that are important to the school leadership.

Cialdini (1999) writes of “six psychological principles that can be considered the most powerful influences” on the social influence process: reciprocation, commitment/consistency, authority, social validation, scarcity, and liking (p. 92). If I were the administrator holding the meeting described above, I would try to appeal to the parents’ desire to be good models (appeal to the commitment they have already made to their children to teach them and raise them so that they will be well-adjusted, contributing adults). I would, while showing that I liked the parents and their punctuality and desire to reclaim their children, point out that ignoring the rules in place, of which the children were aware, was counterproductive to their commitment to be good and effective parents. I would invoke my authority role as principal of the school to add weight to my request for compliance, and I would praise those parents publicly who follow the rules set out for the safe and speedy transfer of children from school to family, noting that in today’s often uncivil world (Scarcity), those who are willing to show kindness and consideration are a sight for sore eyes.
References:

Baron, R., Byrne, D., & Branscombe, N. (2006). Social psychology (11th ed.). Boston, MA: Pearson Education, Inc.

Cialdini, R. (1999). Of tricks and tumors: Some little-recognized costs of dishonest use of effective social influence. Psychology & Marketing, 16(2), 91-98. Retrieved January 29, 2008, from PsycINFO database.

Cialdini, R., & Goldstein, N. (2004). Social influence: Compliance and conformity. Annual Review of Psychology, 55, 591-621. Retrieved January 29, 2008, from PsycINFO database

4/26/2010

Random Quotes, Thoughts, Profanities, and Flowers

Michael Shermer writes in Scientific American: "So what? The fact that we cannot fully explain a mystery with natural means does not mean it requires a supernatural explanation. It just means that we don't know everything. Such uncertainty is at the very heart of science and what makes it such a challenging enterprise."

I liked that, thought it was an excellent encapsulation of being evidence-based. It's okay to admit we don't know something. It's stupid to invent an explanation so that we can have a false sense of security.

Random thought and interesting tidbit: people get to Countering by googling pharma whores. Countering is the number three hit. Fascinating.

People who don't like the content of certain evidence-based pieces, rather than answering the criticisms or direct questions, go on the attack and write nonsense like this, proving certain points for themselves:

   " Conducting a quick Kim-style internet investigation, here's the evidence:

--She's blasted RPM as FC, yet she has Facebook friends who are FC proponents.

--She is not listed on the faculty page for Cisco College.

--She posted more pictures of her cats and flowers than of the 3 children with autism she claims to own.

One can either follow Kim's lead, and draw sweeping generalizations and conclusions about Kim's identity and validity. Or, responsible blogging adults can avoid stooping to the level of Kim and Kim's faceless cohorts in hurling profanities and ignorance as a means to "counter the age of autism"."



I responded on the thread in question, but some of it bears a repeat and an expansion:

If you actually read the RPM post, I nowhere blasted RPM as facilitated communication. And yes, of course, I have friends on facebook who are FC proponents. I also have friends who think vaccines gave their kids autism. I have friends who believe in reiki, too. I try to focus on the areas of common interest and working together to make the world a better place. If they're willing to accept that I write this blog, then I ought to be willing to accept that we believe differently on some things.

The commenter really can't google: here I am, with my syllabi available on the Cisco College website (each link takes you to a different division). To whit, I really have to add, with all due respect: dumbass (hey, she said we dealt out profanities here, so I'm just aiming to please). And again, it seems to be one of the favorite things folks who don't like what I have to say lead with: they question my credentials. Adjuncts typically don't appear on college and university webpages under faculty. I'm on the course schedules, though, and I have years of syllabi available as well as my college email listed on my website. It would be a really stupid thing to fake and then to go to the trouble to create syllabi not just for one discipline, but for two, semester after semester.

But, hey, throwing out aspersions rather than rebutting the arguments is a much easier task, isn't it? It's what AoA spends the lion's share of its time doing: smearing Offit and others rather than actually countering with any evidence for their assertions. It's easier to cry victim and blame big pharma conspiracies than it is to look for evidence, question one's own conclusions, own one's mistakes. I'm going to take it that these parents who've leapt to the attack on RPM's behalf to be no more evidence-driven than the AoAers. They certainly aren't any better at answering direct questions.

My girls' pictures don't appear here for good reason. And anyone who questions the reason for that when my name, my work, and all the information any one needs to find me is out there easily accessible, is using a really stupid argument and completely failing to prove her point. Since this is an evidence-based blog specifically meant to counter woo, I don't write often about my children. They have a right to be protected. Since I don't hide who I am, they aren't hidden either. It's a bs excuse and a subterfuge to note that I post more pictures of cats and flowers. The general public doesn't have the right to access to my children. Why not answer the questions directly posed regarding RPM instead? Must be because they have no good answers. I could insert a profanity here. Instead, I'm thinking of a quote from Paul Lazzaro in chapter nine of Vonnegut's Slaughterhouse Five that would work well here.

And I really don't want regular readers to miss the gem "than of the 3 children with autism she claims to own." Yeah, I'm thinking not having pictures of my children (other than my adult son whose permission I have) is a really wise decision, you know? It would explain why some of these folks go to woo, though, wouldn't it, once you realize they think they own their children?

As to the rest, the commenter failed to respond to any questions, and then when I rebutted each of her points, ended with this bit: "Kim can obviously dish out criticism, yet not take any herself. You've validated my point, though, which was that just about anybody can do a few internet searches, draw warped conclusions, and then spread misinformation like wild fire. If Kim wanted to know the facts and all sides of the issue, then she might dig beyond finding a few websites to help build a lop-sided argument for her personal theories. I do wish I'd noticed the "unsubscribe" button sooner, as it's painful to have an inbox filled with lunacy, the content of which rivals that of shock jocks or hate mongers like Rush Limbaugh."

Ain't that pretty? Rather than responding to point-by-point rebuttals, the commenter preferred to equate evidence-based blogging and matter-of-fact rebuttals with a charge that it was lunacy, rivaling Rush. Right. Well, I think we can all agree that we're happy she figured out the unsubscribe button. It's worth noting, though, that my piece isn't really lopsided, unless you mean it in the way the AoAers do when they complain about media portrayals. I note, in my piece about RPM: According to HALO, “RPM is an empirical and rational teaching method, based upon how the brain works. Academic lessons are intended to stimulate left-brain learning, leading towards communication. "Behaviors" or stims are used to help determine the student's open learning channels.” Despite the claim of empiricism and rationalism, there are only two mentions of RPM in the scientific literature: Van Ackers and a brief mention in a case study by Gernsbacher in 2004 (thanks to Dr James Todd for pointing this out in a comment left in the Facilitated Communication article). It seems pretty balanced, to me, though. Here's what HALO says it is; here's what the scientific literature has to show. Silly me, thinking evidence for efficacy matters. Silly me, thinking that our children deserve to be treated with respect and not experimented on. Silly me, for thinking we ought to make sure that the therapies and supports don't harm them and really reflect their abilities.

And because this post wouldn't be complete without a ubiquitous flower photo, here's another painting my father did (although Rick and I did help out):

Whirlwinds of Thought, Deadlines, and Demands

"I am now unable to stand here any longer. I am forgetting myself, and my mind is reeling."


I've got one week left of regular classes for the two I'm taking, and two more weeks for the ones I'm teaching, and then finals weeks. I am sure there are hundreds of thousands of students feeling this way around the country. I'm certain that about twenty of them are feeling that way about the rough draft of the paper due tomorrow night in the class I teach. As I write this now, I imagine that most of them are working on it right now, having waited, inexplicably, to the last minute to write a six page analysis of Slaughterhouse Five. I bet they're really feeling the way Arjuna was.

Okay, I know these are plums, and the quote that follows is about pears, but Eddie Izzard is one of my favorite comedians, and if you missed the latest in the RPM thread here, you should go look, and you'll get why I think this is hysterical.

Pears can just fuck off too. 'Cause they're gorgeous little beasts, but they're ripe for half an hour, and you're never there. They're like a rock or they're mush. In the supermarket, people banging in nails. "I'll just put these shelves up, mate, then you can have the pear." … So you think, "I'll take them home and they'll ripen up." But you put them in the bowl at home, and they sit there, going, "No! No! Don't ripen yet, don't ripen yet. Wait til he goes out the room! Ripen! Now now now!" -- Eddie Izzard, Definite Article

Here's wishing all my readers, friends and adversaries alike, a beautiful week. It's the last week of April, and it's smashing gorgeous here. And there's a light at the end of the tunnel, even if my mind is reeling. :-)

4/25/2010

A Swan and Roses


Blessings be.

The Cross Cultural study of Religiosity and Life Satisfaction Scores (and tying it to autism-related studies)



One of my areas of interest (although not readily apparent from a blog devoted primarily to countering woo sites and providing science-based information regarding autism and therapies to help autistic children) is the function of religious and spiritual beliefs on helping people cope more adaptively and, as a result, experience greater satisfaction with life.

I believe one of the reasons parents/people turn to quack treatments is because they are maladaptively coping. Now, they are certainly using problem-focused coping in the sense that they are trying to solve a problem, but they are doing so in a maladaptive way, while using emotion-focused coping that places them in forums and boards where rather than getting support that would help them cope adaptively, they end up going deeper into woo, pushing each other into a feeding frenzy of increasingly risky treatments. Part of it may be a need to outdo the Joneses, as well, and I've said before that it's likely that a small percentage of these parents have Münchhausen Syndrome by Proxy.

First, some operationalized definitions for you: 

Satisfaction with Life: An internally imposed cognitive judgmental process providing a cumulative score of one’s subjective satisfaction with one’s life (Diener, Emmons, Larson, & Griffin, 1985).

Religious and/or Spiritual Belief Systems: Any metaphysical or life-guiding principles which an individual practices or believes which forms meaning and allows for coping with the difficulties one faces in life. From this vantage, an atheist, an agnostic, an adherent to a traditional religion, or an individual who defines himself as spiritual may all be said to have a religious and/or spiritual belief system. Most studies dealing with this construct may not measure agnosticism or atheism (and indeed may restrict their examination to mainstream religions).



On to the main course, a study that attempts to look at how religiosity and life satisfaction varies across university students from four different cultures:

Dorahy, Lewis, Schumaker, Akuamoah-Boateng, Duze, and Sibiya (1998) compare religiosity scores and life satisfaction scores in four different cultural samples of university students: Ghanaian, Nigerian, Northern Irish, and Swaziland and found that there was not a significant relationship between religiosity and life satisfaction in women in any of the four cultural samples, but a significant relationship between religiosity and men in three of the four groups.

Dorahy et al. (1998) note the number of measurement tools to measure religious beliefs and the variety in potential religious constructs. Part of the difficulty in choosing a measurement tool is reflected in the fact that the psychology of religion remains a fairly contentious and fractured field with little overarching theory to guide it (Paloutzian & Park, 2005), in the difficulty in operationalizing definitions of both religion and spirituality (Miller & Thoreson, 2003), and in the lack of “consistency in the measurement” of religious and spiritual constructs (Rippentrop, 2005, p. 282). Despite the obstacles, a growing body of research points to the importance that religious and spiritual beliefs play in multiple domains (Paloutzian & Park, Miller &Thoreson). For the study, Dorahy et al. chose to use the Theism Sub-Scale of the Religious Attitudes Scale (Maranell, 1974, as cited in Dorahy et al.) to measure their construct of religiosity. This choice was made “in an attempt to provide an alternative measure that would complement those employed by previous studies” (p. 38). The Religious Attitudes Scale does not appear to be a widely used scale in religious and spiritual measurement; no mention is made of it in Hill’s (2005) extensive coverage of available measurement tools which offer good reliability and validity.

The choice to measure life satisfaction was the Satisfaction with Life Scale (SWLS; Diener, Emmons, Larsen, & Griffen, 1985). The SWLS is considered to have moderate concurrent validity, having been compared with nearly a dozen other measures of subjective well-being (Perrone, Webb, Wright, Jackson, & Ksiazak, 2006). Pavot and Diener (1993) found that the SWLS “assesses an individual's conscious evaluative judgment of his or her life by using the person's own criteria” (p. 164).

There appear to be several areas in this study that are open to criticism. Perhaps one of the main issues is the use of only university students for each of the four cultures and the extrapolation that these students, whose mean ages ranged from 22 to 26, represent their culture. Religious affiliations among the four samples varied from 69% to 99% Christian, and no mention is made if the breakdown of religious affiliation corresponds to the population at large. No specific mention is made in the journal article regarding any limitations or potential weaknesses in the study. In addition, Dorahy et al. (1998) used these two scales in the original English, noting that it was “the teaching language at each university” (p. 39). No attempt was made to determine equivalence between the cultures nor was any mention made of a concern regarding equivalence.

While the above criticisms are directed towards cross-cultural issues, a larger problem with the Dorahy et al. (1998) study is that nowhere in the study is religiosity defined, nor how the Theism Sub-Scale in particular is supposed to measure the construct of religiosity.

If I were conducting a similar study today, I would make several adjustments. If I were restricting my sample to university students in four “cultures” I would make it clear that my study was not looking for commonalities among four cultures, but be specific that I was looking at commonalities in university students from four different cultures (I’d also provide some rational as to why the four specific cultures were chosen). I would define clearly the terminology I used; I would pick an assessment tool that was more widely used and would therefore serve as a source of comparison. I would make it clear what the assessment tool was measuring and how (which was not well done for the Theism Sub-Scale; why only that portion, why not the whole scale?). I would look at issues of equivalence and not make a blanket assumption that because English is spoken by all that the terms in the scale are all understood in the same way.

An additional concern I have is the unstated assumption that a person who abstains from belief in god would have less life satisfaction. I would want to look at that specifically. Are atheists really less satisfied? Are agnostics? Are these studies restricted to only believers or are non-believers so off-put by the measurement tool assessing religiosity or religious and spiritual beliefs that they react with hostility? Any study that involves religious and spiritual variables needs to at least consider this, as it may reflect an undetected bias by the researcher. The only scale I have found that measures some component of spirituality which removes “god” from the equation as therefore allows for agnostics and atheists a scale which reduces the chance of a negative reaction is the Spirituality Index of Well-Being (Daaleman & Frey, 2004). I would, if recruiting a sample not restricted to believers, choose this scale.

And now to bring it around to autism and Wakefield (good, ain't I?):

The evidence we gain from studies is only as good as the study design (and subsequent statistical analysis) allows. Flawed study designs leave us no better informed than we were before the study was conducted. Although this particular study doesn't deal with autism, the fact that it is flawed and having demonstrated how it is allows the comparison that many studies related to autism have inherent design flaws within them, which leave us no better informed. The media doesn't look for design flaws or statistical significance, doesn't look at sample size, doesn't look for flaws in analysis, and apparently neither do some of the journals that publish the studies, or Wakefield's mess would have never been published in 1998.

References:

Daaleman, T. P., & Frey, B. B. (2004). The spirituality index of well-being: A new instrument for health-related quality-of-life research. American Family  Medicine 2, 499-503.

Diener, E., Emmons, R., Larsen, R., & Griffin, S. (1985). The Satisfaction With      Life Scale. Journal of Personality Assessment, 49(1), 71-75. Retrieved  January 19, 2008, from Academic Search Premier database.

Dorahy, M., Lewis, C., Schumaker, J., Akuamoah-Boateng, R., Duze, M., &  Sibiya, T. (1998). A cross-cultural analysis of religion and life satisfaction.  Mental Health, Religion & Culture, 1(1), 37. Retrieved December 28, 2007, from Academic Search Premier database.

Hill, P. C. (2005). Measurement in the psychology of religion and spirituality. In R. E. Paloutzian & C. L. Park (Eds.), Handbook of the Psychology of Religion and Spirituality. (pp. 43-61). NY: The Guilford Press.

Miller, W., & Thoresen, C. (2003). Spirituality, religion, and health: An emerging research field. American Psychologist, 58(1), 24-35. Retrieved April 04, 2007, from the PsycARTICLES database.

Paloutzian, R. E., & Park, C. L. (2005). Integrative themes. In R. E. Paloutzian &   C. L. Park (Eds.), Handbook of the Psychology of Religion and Spirituality.  (pp. 3-20). NY: The Guilford Press.

Pavot, W., & Diener, E. (1993). Review of the Satisfaction With Life Scale.             Psychological Assessment, 5(2), 164-172. Retrieved March 15, 2008,  from the PsycARTICLES database.

Perrone, K., Webb, L., Wright, S., Jackson, Z., & Ksiazak, T. (2006). Relationship of spirituality to work and family roles and life satisfaction among gifted adults. Journal of Mental Health Counseling, 28(3), 253-268. Retrieved   December 8, 2007, from Academic Search Premier database.

Rippentrop, A. (2005). A review of the role of religion and spirituality in  chronic pain populations. Rehabilitation Psychology, 50(3), 278-284. Retrieved September 14, 2007, from PsycARTICLES database.

4/24/2010

Sexual Attitudes and Behavior: A Literature Review

A couple years ago, I wrote a rather lengthy paper contrasting dominant American culture and the disability culture, with a focus on autism and Asperger's. With Nightstorm's recent posts on sexuality and autistics, I thought I'd post this; it looks at the existing research literature and the need for caregivers to provide sexual education for those with autism. I haven't touched it up, just pulled the relevant section from the paper, and I'm not including the works cited below for those referenced, as I'm crunched for time and would need to weed through the references for the entire paper. If anyone wants more information on a particular citation, let me know, and I'll post that reference for you. This is a review of the literature current through 2008.

Sexual Attitudes and Behavior

In a national cultural values survey, Fitzpatrick (2007) interviewed 2,000 Americans about their religious and cultural values. Americans overall, according to Fitzpatrick, can be divided according to their beliefs in the “role of religion in everyday life” into three “value groups—Orthodox, Progressive, and Independent” (p. 3). The majority of Americans are independents (nearly half) and 91% of them believe in god, and agree with the orthodox in matters of sexual morals. About a third are orthodox, “fundamentally religious in outlook” while one sixth of Americans are progressive and are “fundamentally secular” (Fitzpatrick, p. 3). What an American believes about sexual attitudes and behaviors depends to a large extend on one’s religious identification. While 83% of all Americans find adultery to always be wrong, when broken down by group, only 61% of progressives believe that, while 95% of orthodox Americans hold that belief. Two thirds of orthodox Americans think that premarital sex is wrong, but only 3% of progressives do. Only 15% of progressives think that homosexuality is wrong, while 83% of orthodox and 39% of independents feel that way. If one was to separate Americans based on age, socioeconomic status, ethnic identity, regional affiliation, etc., one might find even more drastic differences between people who adhere to the idea (at least) of a common American cultural identity. Since this survey was a representative sample, and since it found that about half of Americans identified as independent, the assumptions of this assignment will be based on this broad sample of Americans. Independent Americans tend to agree that adultery is wrong, but premarital sex is okay, that sex between high schoolers is wrong (68% of independents), that couples should be faithful, and that divorce is acceptable. While most independents are accepting of homosexuality, most are also against same-sex marriage. Gardiner and Kosmitzki (2008) note that where cultural norms are accepting of premarital sex, it is “an expression of love and affection” (p. 181). While this cultural values survey didn’t ask for the reason or meaning of premarital sex, an argument could be made that who is answering the question as well as whether the question is referring to an ideal state or the actual state of affairs, determines the answer. While most independent Americans’ attitude towards premarital sex might hold ideally that sexual relations should be because of and in order to share love and affection, many would also admit that often this is not the case regarding actual premarital sexual behaviors.

Issues concerning sexuality, sexual attitudes, and sexual behaviors in individuals with autism and Asperger’s are complex, both from the perspective of the caregivers and from within the autistic/Asperger’s community. Much depends on the intellectual capacity of the individual, and his or her particular environment. Studies have examined the sexual behaviors of individuals on the spectrum who live in group homes and institutions. Koller (2000) notes that there is limited research regarding sexuality in individuals on the spectrum when compared to research regarding sexuality in individuals with intellectual disabilities without autism. However, from what is known, Koller points out that educating both the caregivers of individuals with autism concerning sexuality and the individuals with autism is necessary in order to prevent adolescents with autism from forming “unhealthy opinions and views about sexuality which affect their self-esteem and interactions with others” (p. 126).

Sexual behavior has been reported to be a large concern of caregivers of individuals with autism, and studies concerning sexual behavior of individuals with autism have shown masturbation to be the most commonly engaged-in sexual behavior, with a significant minority engaging in masturbation in public or at otherwise inappropriate times or places (Hellemans, Colson, Verbraeken, Vermeiren, & Deboutte, 2007; Koller; Van Bourgondien, Reichle, & Palmer, 1997). Sexual interest appears to be almost universal in high functioning male adolescents with autism, according to the study conducted by Hellemans et al., and masturbation was known to be engaged in by nearly half of the participants, and nearly half engaged in sexual behavior with another person, predominantly kissing and cuddling. Van Bourgondien et al., in a sample that included femailes as well as males, with a broad range of ages and functional levels, found that 68% engaged in masturbation, with75% of the male respondents and 24% of the female respondents engaging in the behavior. Over three quarters of the sample engaged in one or more sexual behaviors, with 34% of the respondents engaging in person-oriented sexual behaviors. The most significant finding of these studies has been the relatively rare known attempts at sexual intercourse with others. These studies do have significant limitations in that the samples are small and may not reflect the sexual behaviors of individuals with autism and Asperger’s who do not live in group homes or institutions.

Konstantareas and Lunsky (1997) compared individuals with autism and individuals with developmental delays in their relative sexual attitudes, interests, and experiences and found that individuals with autism “endorsed more sexual activities” than those with developmental delays, but there were no significant differences in sexual experiences in the two groups (p. 397). In addition, the higher the cognitive levels in the individuals with autism, the better able to define a sexual activity. Konstantareas and Lunsky also found that the females with autism reported more sexual experiences than did the females with developmental delays; a potential reason for this is, according to Konstantareas and Lunsky, is the tendency for individuals with autism to be bluntly honest and uncensored in their conversations. As a parent to an adolescent male with autism, I can attest to the lack of awareness of potentially socially awkward or inappropriate conversational topics.

Because of the typical rigidity with which views and beliefs are held by individuals with autism, what their caregivers provide in sexual education is likely to have a dramatic effect on what they believe is right behavior and wrong, so that in a family where traditional religious values are upheld, the individual with autism may take the traditional beliefs regarding sexual behavior to be literally true, and hence have rather strong negative reactions towards any sexual behavior outside of those dictums. How the individual with autism is treated concerning matters of sexuality will play a pivotal role in the attitudes and behaviors the individual adopts and engages in. These attitudes and behaviors will be as singularly individual as they are in persons without autism. In the end, culture cannot account for the individual’s private, unseen behavior, although it may reflect the publicly endorsed attitudes. What is important for individuals with autism is careful, compassionate education regarding appropriate social behavior, sexual or otherwise. Koller advocates for thorough, continuous, competent, nonjudgmental sexual education for individuals with autism, so as to “protect the individual from sexual exploitation, teach healthy sex habits, and increase self-esteem through systematic, individualized approaches” (p. 131). This education falls to the caregivers and will play a large role in how the individual with autism comes to view his or her own sexuality.

4/23/2010

Now This, This is a Rant

Sometimes, I get the most interesting of discussions going on posts I least expect it from. My facilitated communication post got lots of attention and now my rapid prompting method post has attracted the determined attention of a former volunteer at HALO and satisfied customer (well, actually, two at this point).

I've been told that my position on RPM is because I'm too scared to know better (see Lynne's response down around the sixtieth response or so): "I am aware that with ignorance comes fear, but do not be afraid. Learn about RPM and maybe then you won't strike out in fear." I admit I was somewhat sarcastic in response to that.

My conclusion about RPM stands:


Rapid Prompting Method has been around about a decade. There are no studies whatsoever on this method. There are testimonials. That’s it. There is no way to assess whether autistic individuals who are the recipients of RPM really benefit and gain skills from this method. There is no way to assess whether responses are a result of the prompter’s co-opting. I’m fairly sure of one thing. If it were me, and I had an adult doing RPM on me, and I could learn to type, respond, communicate, I sure as all get out would do it as fast as I could just to make the noise and the personal space crowding stop. And I’d have a fair bit of trauma as a result of the experience. But that’s just me. Maybe she really has helped hundreds upon hundreds of autistic kids. We’ll never really know, though. I mean, if RPM hasn’t undergone testing in a decade, is it really ever likely to? Especially as long as she can make a good living from it?

Rapid Prompt Method doesn’t pass the evidence test because it has never been subjected to the rigor of a scientific study. It’s unlikely that it would, either. 

...

To this, we can add that those who have psychologically, emotionally, and financially invested into HALO really hate it if you note there is no scientific evidence for its efficacy. 

Here's my real bone of contention. There are a lot of treatments out there for autism that make the practitioners big bucks. ABA costs 50 grand a year (we've never used ABA, by the way, at least not paying someone else to do it. I got the textbooks for the master's program in it, read them, modified it for my kids and did it myself). Hey, buy into the Wakefield woo, and you can spend around 400 bucks an hour with the docs at Thoughtful House, which insurance doesn't cover. And then there's the DAN! docs, and chelation. What about HBOT? So many choices for parents and lots of message boards out there to help you figure out how to hide the nicotine patch you're slapping on your kid from any prying eyes.

So, folks come along, and they come up with an idea on how to help autistic kids and they open up clinics. Geiers, anyone? And parents take that the treatments are safe, legitimate, etc., and off they go to spend their money because helping their kids matters. And it does, I'm arguing strenuously that helping our kids achieve their potential absolutely matters, is of primary importance. But we do that while keeping them safe, respecting their personhood and not using them as guinea pigs. Period. Because some things are too important to give our kids mining chelators on their breakfast foods, you know?

Alright, then, you've got a plan to help autistic kids and you want to share it. What do you do? You could put it out there for parents for free, since it's a teaching method, a one-on-one interaction with the autistic child to help explore his intellectual potential. Right? That's the moral thing to do, isn't it? Share it around so that you can help the most people possible? 

Or, you could steep it in a fair amount of mystery, create a series of hoops to pass through to get to the method proper and make your living off of helping the kids you could physically come into contact with. Which one serves the greater good?

I understand full well that there are educational interventions that are not backed by scientific evidence. I know, having taking both undergraduate and graduate education courses in the field, just how soft education is, science-wise. Plus, teaching experience that spans back to the mid-90s; that comes in handy, too. I'm not and have never suggested sitting on our hands while waiting for science to catch up. We make darn certain, though, that what we do doesn't put the child at risk.

Where there is no risk of harm, where the child is respected, a close teacher-student relationship is sure to make a difference, even if we don't have it scientifically quantified. I also know how much harm can be done when the teacher is woo-based or has an educational philosophy that doesn't put the child's well-being first. 

I'll repeat again, I don't know if RPM works. What we have are testimonials and anecdote. We have two sample videos that show a student being physically crowded, strips of paper being ripped, endless chatter and no space to think, with forced choices. We can't see what's on the paper, we can't really hear well enough, we don't know. I do know, though, as someone who has taught both high school and college, and who spent ten years teaching my oldest (and then later my youngest two), that if this is how RPM proceeds all the time, it is intrusive and invasive of a child's space. I am sure parents would be more likely to modify it to fit their children, like I did after reading the ABA textbooks and employing what I know about cognitive-behavioral techniques, and so that once again, we may have parents using a terminology that does not reflect what the website provides examples of.

HALO isn't based on sound scientific theory; it's one woman's speculations, and it's lead to a good way of life for her. Does it work? I don't know. I do know that folks who are thinking clearly might wonder why something like that has to be bought instead of having the information on how to implement it provided for free. Why all them hoops are necessary and why it costs at least $725 dollars to get the training (after you've paid for the video and sent the kid to Soma's camp).

And the argument that people have to make a living and deserve to have their time compensated won't hold any sway with me. Do you see any advertisers here? Any sponsors? A donation button? Why, no, you sure as shoot don't. And if you're a regular here, you know that a fair amount of my fairly limited free time is spent reading journal articles or, gads, the frikking woo, trying hard to provide evidence-based articles for parents so that they'll have access to stuff they might not otherwise have come across. And I don't charge a dime. I don't go tell you to buy books, either, to put back into a nonprofit that doesn't seem to work the way nonprofits ideally should. 

That's alright, I've been looking into nonprofits, and what I'm noticing is that they seem to be a way to take in money without offering a product and all while not paying taxes. NVIC anyone? Barbara Loe Fisher doesn't get a whole lot of salary from it, but it's more than I make in a year. Nothing to sneeze at, is what I'm saying, to borrow a Thelma.

Parents may be grown ups and have to live with their decisions, to paraphrase the nurse who seems to think I'm operating out of fear, but it's the kids who really live with those decisions. And the parents who self-justify themselves right on into the biggest corners you ever saw. 

See, there ya go. That was a rant. 

Our Confirmation Biases: When Individuals with Autism Go Missing

It's heartrending to read a report of an autistic child gone missing. Heartbreaking to read when that child dies. As parents to children on the spectrum, we feel it keenly, deeply. It is one of our biggest fears, so our ears perk up when we hear yet another story of an autistic child gone missing.

We pray, we ask the universe to be kind, whatever our belief system allows. We wish, we hope, we wait. We grieve for the child when the outcome is the worst possible. We grieve for the families. We redouble our efforts to make sure that we have plans in place, a foolproof way to prevent ourselves from facing this.

If we're looking at the bigger picture, if we're balancing not just our narrow world view, but also checking our gut with our head (not letting affect or availability heuristics have their terrifying way with us), instead of magnifying the threat, or even worse, using the situation to exploit and further scare people, we take a gander at just how many children go missing, just how many families deal with this. The worst thing we could do is to overmagnify the likelihood that autism alone is to blame and if only autism weren't involved, this would never happen. We certainly don't lay the death at autism's door, as if it were an entity (confirming along the way that the horrendous I Am Autism video from AS really represents how we see our children and autism).

We breathe, as our heart aches, and we go look at just how many parents have to deal with this, in the US alone, each year; parents whose children have no diagnosis, and we take a minute to reflect that this is not just the greatest fear of a parent to a child with a disability. It is a parent's greatest fear, period.

According to the National Center for Missing & Exploited Children: "797,500 children (younger than 18) were reported missing in a one-year period of time studied resulting in an average of 2,185 children being reported missing each day."

So, while we focus our attention, our fear, our concerns, on the autistic children who go missing, let us not forget that each day over 2000 kids under the age of 18 go missing each day, most of whom we obviously never hear about.  It's likely, what with the 1 in 6 statistic relating to learning disabilities, that over 300 of these kids have a learning disability, while about 20 are on the spectrum. Two to three percent of children have ADHD, so 40 to 60 of these kids who go missing each day might have ADHD. The CDC reports that  "12 of every 1,000 10-year-old children" have some form of intellectual impairment, but that in about a third of other disabilities, this cognitive impairment was comorbid. So, at least two dozen of the children who go missing each day are likely to have a cognitive impairment.

My point, in case it isn't crystal clear: children, both those with some neurological condition or disorder and those who have no diagnoses, go missing in numbers that should and do strike fear into our hearts as parents. Having an autistic child, or two, or three, or more, doesn't mean you have the exclusive rights to this fear. It is a global fear. And it is obscene when someone uses the death of a child to further one's agenda. It is no longer about grieving for that child, that family, but about advancing one's own agenda.

Reporting about a specific individual should be designed to raise awareness for that individual, to offer support to that family, but not to advance your particular agenda. To go around tweeting the kinds of things one site chose to, well, that's a reason to be morally outraged. I can only assume it came from the very real fear that we all, whether we have children on the spectrum or not, share.

When we choose to deal with this fear in ways that are exploitive, excessive, histrionic, or strident, perhaps, just perhaps, when we've calmed down, thought it out, we ought to own we've made a mistake rather than continuing to compound it. Unfortunately, these individuals who keep making this same set of mistakes have never acknowledged them or owned them. Failing to own mistakes says a lot about a person, about an organization.

We can, however, agree, that our children, yes, our sweet, precious children, will aways be our babies, as long as we're living. And it is that recognition, that awareness, that despite our differences, we all love our children passionately, deeply, and forever, that allows us (should, anyway) to realize that we are united in ways we seldom choose to notice.

4/22/2010

Louise Visits: Pinky Kelleher-LOST SOUL train dancer

Well hey now folks. Hells bells it's been a while since Miss Louise sat down with y'all. Lord I been a busy woman..between tha shriners convention, and the Stink Creek spring festival..Things have gotten a little out a sorts for good ol Miss Louise. The old money makers were a swinging low sweet chariot! And there wadn't no one a comin forth ta carry me home! OOEE! I needed me a bit of a revival. Some rest and relaxation. Boy Howdy thats for damn true!

Now I was gonna ask my gal Thelma ta accompany me on a week long visit to the Stink Creek Mud Spa and Genuine Barbeque pit. "Where tha mud is for you an tha pigs are too!" But she was tied up doin some nursing. Seems that Mama H got ahold a some a that body wax and tried ta give herself one a them Brazillians. Didn't work out with all a them wrinkles an folds an whatnot. Leavin her all kinds a irritated YEE HA! I'ma guessin her lips are sealed for the time being!!..iffen ya ken me? Too bad her jaws still a flappin! What between Mama H's feminine parts an the Raisins viagra overload..My gal Thelma's got her hands full. I'm just hopin she finds the blindfold and ear plugs I left for her.

Since my gal Thelma was unavailable I thought about givin one a my old dancing friends a holler. A gal by tha name a Pinky Kelleher. I reckined we could get together share a few laughs about the good 'ol days..an at the same time beautify an rejuvinate. Now Pinky was a bit of a celebrity an such back in the '70's. She is one a the original "SOUL TRAIN" dancers. Do y'all remember that show? A fella by tha name a Don Cornelious was tha host. Pinky jived and grooved and shook her big blonde afro like nobody's business. WOO EEE! There wadn't no one could do the electric slide like Pinky could! It were a sight ta see! Pinky shaking an twirlin under tha strobe lights..her hair a weavin and a bobbin along ta Sly an tha family Stone an other Motown legends. She was a star!

Sad thing about Pinky was, once she got famous, it kind a went to her head. She started seein herself as tha voice a tha people! she started losin tha sense a who she was. Identifyin with groups an people she din't have no right ta be identifyin with in tha first place. One day she'd be fightin for tha rights a hair restoration and porn star fluffers in Missouri and the next week for unemployed pregnant funeral home beauticians in Utah. Didn't matter that she was none a those things. She thought that somehow she could relate. Sad thing about it was it cost her her job. She was so dang busy fighting this and opposin that..she lost sight of who she was. A fine dancer an a joy to behold. Lots a folks missed Pinky. I know Soul Train aint never was ever tha same.

I never did get around ta callin Pinky. Ta tell tha truth I wadn't to sure she all would be interested in hearin from me. Oh sure I get the occasional email or letter from her tellin me about her causes an such..but she don't never bother respondin when I write her. Guess I just aint in her league anymore. Damn shame aint it?

No sir! I just spent a week in my trailer with tha phone turned off catchin up on my beauty sleep and my womanly excercises. Now I'm back and I'm rarin ta go! Boy Howdy! Not only can I pick that banana up off a tha table, but I can peel it with both hands tied round my back! Feet too! I'm a feelin so good that I'm startin a new seminar down at the senior center next week called " The neccesity a squats an thrusts-cause tha behind is a terrible thing to waste! That's for damn true! As always y'all are welcome ta join me!

When Anger Consumes, Reasonable Discourse is Impossible

There are some divisions that are not possible to be overcome, some people that cannot be worked with, despite a willingness to focus on things that should be common interests. When Age of Autism's editors put out the sorts of things they do, reasonable people recognize they are not dealing with individuals willing to engage in rational discourse, willing to work to overcome obstacles that our children face.

Plus, when they shift their stories, it's kind of hard to take them seriously. They've spent the last year badmouthing Ari Ne'eman, and now they want to pretend that it isn't that they are against Ari; it's that they are against him being the only autistic representative. BS: "We have published a number of posts explaining why we do not support Ari Ne'e,eman, a young adult with Asperger's Syndrome, as the sole representative for the autism spectrum on the National Council for Disabilities."

I am all for working with parents regardless of where they think autism comes from if their focus is on acceptance, appreciation, and accommodation. I'm not for sacrificing my principles to work with people like those running AoA. I see no evidence that these three things are things they are working for.

On a side note, to someone I consider a potential friend, I do not think, having been there, that calling a parent desperate is an offensive thing to do. What parent wouldn't be desperate to help his/her child? And I mean I really have been there, enough times, with my oldest two, when I had legitimate worry about whether they would survive or not to know desperation inside and out, to the depths of my soul. If anything, when I use desperation, I use it with an intimate awareness of what it means to know desperation and how important it is, in that darkness, in that depth of despair, to have accurate, legitimate information to rely on.

4/21/2010

David Brown: Confirmation of Statement from Aarhus University

By David Brown

It's now been about a week since I finally received an answer to the question of whether Aarhus University actually wrote thrust into circulation by Age of Autism and Generation Rescue early last month, incriminating autism researcher Poul Thorsen in the forgery of a grant supposedly from the US CDC. It has been a relief, after a fashion, even though it has meant admitting a major error on my part.  It has also given me reason for thought.
First off, here is the full text of the email:

Dear Mr. Brown,

I am sending you this on behalf of Mr. Anders Correll, senior press officer at Aarhus University.
First of all, we can confirm that we have sent out a statement to our partners in the research collaboration about this matter (the statement is enclosed).
Subsequently, we can confirm that the passage you cited is correct.
Due to this being an ongoing police investigation, Aarhus University cannot comment further on the matter, but you are welcome to enquire with Eastern Jutland Police Dept who are handling the case.

Phone No.: +45 8731 1448. E-mail: ojyl@politi.dk. Ref: Børge Frandsen
At this point, I suppose, a significant amount of reflection is in order.  Something I have had to admit to myself is that challenging this document's authenticity was a major departure from the scholarly methods which I support and prefer to follow.   My interests run from history to folklore to Forteana. When it comes to giving a source the benefit of a doubt, I'm a flaming liberal. My long-established “rule of thumb” is to allow, at least for purposes of discussion, that a source is  approximately true on points of fact (or at least perception), and see if I can proceed under that assumption to a scenario that is plausible and harmonious with known facts or other reports.  It normally takes a lot for me simply to throw up my hands and dismiss a source as completely false.  So, I have had to ask myself, why was I so skeptical of this document?

In hindsight, I think the main reason was probably that I was sidetracked by what I now recognize as a separate issue: whether Aarhus had or ever would have approved this document for public circulation.  The answer was obviously “no” on both points: There was no evidence of the document being circulated publicly before it appeared on “anti-vax” sites, and there were obvious reasons for Aarhus to avoid making such a statement public.  But that was an issue of the document's context and purpose, not its authenticity per se.  I was similarly mistaken in arguing against authenticity  based on typos and awkward structuring that to me suggested multiple authors.  I still consider it a strong possibility that the document had multiple authors.  But, in hindsight, that could easily be accounted for in a scenario of authenticity.  It is well-known that professionals routinely delegate the task of writing to secretaries and other subordinates, and it would not be at all surprising if a single document ended up written by two or more people.

I believe I made a further error in judgement by letting the obvious falsehoods that had been reported weigh against the document.  I was willing, in principle, to set these aside when evaluating the document.  But, I'm in no position to ignore how much I could have let the context in which the document was being cited color my evaluation of it's authenticity. I will also admit an even more fundamental issue:  By the time I started writing, the story posted by AoA and source sites had already been thoroughly discredited.  Thus, my usual, generous method of walking through a source while looking for elements of plausibility was not going to prove anything of great importance.  The path I took instead was the one which would truly break new ground, and as it turned out led directly to error.

Something I will add is that I am still not satisfied with the “facts” as reported in the document.  As I noted at the start, the accusations in the third paragraph were at odds with Thorsen's professional biography.  It was claimed (in a very roundabout way) that Thorsen was still presenting himself as a representative of Aarhus, but his biography indicates his employment ended in 2008, even earlier than the March 2009 timeframe indicated by the document.  Even more problematically, it was complained that Thorsen held simultaneous “double full-time employment” at Aarhus and Emory.  (The claim crossposted at AoA  from theflucase.com that “Aarhaus (sic!) University...  `expressly prohibited' Dr Poul Thorsen from working for a second university, Emory” was clearly a garbling of this allegation.)  But, Thorsen's biography describes his position as an “associate”, which would indicate less than “full-time” employment.  Now that the possibility of fabrication by a third party has been denied, these anomalies are in many ways more problematic, for Aarhus and Thorsen alike.  The only remaining explanation  is that one, or the other, or quite conceivably both parties have provided information that is less than fully accurate and complete.

Finally, I will say a few things about the case of Thorsen.  I remain skeptical whether Thorsen had a role in the forgery.  Based simply on analogy with other cases, I think it more likely that the forged grants were created by someone (or several people!) further down the organizational food chain.  On the other hand, it is hard to imagine a scenario where Thorsen could be held wholly blameless.  Even if he didn't participate directly in the forgery, he could have known about it, before or after the fact.  Even if he didn't know  about it, as a certainty, he could have contributed to it by inappropriate actions, ranging from “looking the other way” to making demands that subordinates could only meet through fraud.  Even if none of these is proved, the fact would remain that the fraud occurred in a project that he led and was supposed to supervise.  I suspect that that alone would be enough to end his career.

Whatever the facts, it can be taken as a given that Thorsen's actual actions and motives are at once more prosaic and more complex than the anti-vaxxers' formulaic charge of  bribes in exchange for faking research to discredit an autism-vaccine link.  But there is a “coverup” very much in evidence, and it has nothing to do with autism, vaccines, Big Pharma or even necessarily with greed.  It is notoriously well-known that hospitals are anything but forthcoming about employee misconduct.  Even in “angel of death” cases, there is a well-documented pattern of hospitals firing the employee quietly and without explanation rather than reporting him to law enforcement, medical boards or even his next employer.  The usual alibi, unfortunately with plenty of merit, is that if they did the ex-employee could turn around and sue. It was in light of this that I was absolutely incredulous that the “Aarhus document” could be an actual release from the university.

  From what can be known at this time, its circulation is in fact all too consistent with the pattern seen in hospitals. It would appear that this clumsy composition was originally intended only for the eyes of personnel at other institutions (note the phrase “partners in research” in the email text).  If it was ever seen by or reported to the mainstream media (as would seem plausible in light of articles at the Copenhagen Post and elsewhere), Thorsen's name was expurgated at some point before publication.  Then, when it somehow was obtained and posted by anti-vax websites, and used irresponsibly to advance false claims, the university waited more than a month to acknowledge that the document, as posted, was theirs.
Such are the realities of modern medicine, and they ought to be far more frightening than any anti-vaccine conspiracy theory.