More bloviating by discredited Dr Wakefield

Outbreaks of  fully-preventable diseases are increasing

As reported on Thursday, April 11th in the UK paper The Independent, Swansea measles outbreak: Confirmed cases rise to nearly 700″, which is worse than than last year’s outbreak in Merseyside, England.

Over 2,600 MMR vaccines were given last week, but are still insufficient to counteract the number of unvaccinated people, or those who lack the full number of necessary dosages. Public health officials explained that the outbreak will continue to grow. (This is what is meant by “herd immunity”: there needs to be a sufficient percentage of people who are immune to prevent the spread of infection.)

And as the article reminds us,

Before the introduction of the MMR jab in 1988, about half a million children caught measles each year in the UK. Approximately 100 of those died.

But for reasons I don’t understand, Andrew Wakefield (who apparently suffers from ‘Center of Attention Deficit Disorder’*), was not just mentioned as a historical reference, due to being a pivotal figure in the paranoia that led to the drastic drop in immunisations. The front page of The Independent’s online edition for Saturday, 13 April 2013, has in its top, featured article a large photograph of him, Struck off MMR scare doctor: Welsh measles outbreak proves I was right. What in the world for?!

Why the concern over Wakefield’s opinions being published, with a newspaper’s front-page lead?

Andrew Wakefield should not be a featured person of interest for opinions. He is no longer a licensed doctor in either the UK or the US. In 2011, Medscape designated him “Worst Physician of the Year” and in 2012, Time listed him in, “Great Science Frauds”.  There is also a good editorial in the same edition of The Independent“Andrew Wakefield’s baleful legacy”.

Wakefield’s unprofessional behavior as a researcher and false assertions that MMR vaccines can lead to autism (in a 1998 article in The Lancet, later withdrawn by the journal) are  a bunch of frass (insect dung). Plus, his ongoing media attention and involvement with what initially were fringe groups, inflated such ‘antivax’ sentiments to mainstream popularity.

Vaccination rates dropped drastically, from 92% to as low as 50% in some areas. Measles outbreaks began occurring across Britain, and in 2006 for the first time in 14 years, someone died of this preventable disease.

(Similar outbreaks happened in the US as well, including mumps. In 2006 got an MMR vaccine then because I had never had mumps, nor been vaccinated for it. Even if I had, the old killed-virus mumps vaccine used when I was a child was found to be ineffective.)

Included in The Independent’s series of articles is the useful, “Timeline: How the MMR scare story spread”  by Jeremy Laurance.

The feature article: the good, the bad, and the problematic

The front-page feature by Jeremy Laurance is titled, “Struck off MMR scare doctor: Welsh measles outbreak proves I was right”. Which of course, is not true; Wakefield is just bloviating again**. As the front-page subhead reads, “Experts condemn discredited doctor’s outburst pinning the blame for the outbreak of measles in Wales on the Government as cases in the Swansea area rises”.

The linked article posted in the Health News section has a different title, “MMR scare doctor Andrew Wakefield breaks his silence: Measles outbreak in Wales proves I was right” (subhead: “As measles cases rise, experts condemn Wakefield’s outburst”), which begins with with six paragraphs of current events, then describes Wakefield’s assertions in the next eight paragraphs.

BUT, the factual counterpoints to the nonsense, clearly stated by, Adam Finn, paediatrics professor at University of Bristol, and childhood vaccines expert, are not given until afterwords, in the next nine paragraphs of the article.

Unfortunately, not everyone is going to read that far, nor stop to digest the complete refutation of all the idiocy that Wakefield said.

I think Finn’s factual material would have been more useful if presented earlier, such as a point-by-point dismissal of nonsense, e.g. ‘Wakefield claims … but Professor Flinn refutes …’

Alas, perhaps due to following the common news formula of, So-where’s-he-working-now, included this last paragraph, which unfortunately lends him what some might perceive as professional credibility:

“Dr Wakefield moved to Texas, US, in 2001 where he is director of Medical Interventions for Autism and in January was promoting a reality TV series on autism.”

Remember, Andrew Wakefield uses the title “Doctor” because he earned a degree in medicine; he is not licensed to practice medicine in either the UK or the US.

As I said, Wakefield should remain a historical warning, rather than a featured person of interest for opinions. Adding on the reasons why his comments are harmful nonsense at the end of an article are not enough to detract from the fact that all this frass is featured for free!

_____

* I didn’t make up the (fictional) COADD — ‘Center of Attention Deficit Disorder’, but I sure see a lot of it in our problem students (as opposed to the students with problems, who generally want to avoid being in class).

** Bloviating: a lesser-known, but useful addition to one’s vocabulary: to speak boastingly, pompously, aimlessly; as the OED says, “talk at length, especially in an inflated or empty way”

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The Silver (Smoke-) Screen

O.M.G. Last night at the grocery I was stocking non-prescription meds, and a couple came in asking for … colloidal silver! (Meaning, microfine silver dust suspended in water or another carrier.)

I was baffled; she explained that “Dr Oz” suggested it for sore throats.
“I don’t think we carry that,” I answered, somewhat stunned. “I’ve only used it in a research lab.” (In the teensiest of microdabs, to glue ultra-fine gold wire electrodes to insects.)

“Oh, it’s all-natural!” she asserted cheerfully.

Giant mental sigh and cringe on my end; lots of “all-natural” stuff can be all-naturally poisonous.

The guy with her added something to the effect of, “I bet you all don’t like Dr Oz.”

Er, I’m wary and alarmed by media personalities who promote misleading, useless and/or dangerous medical information. (Last year this celebrity was the recipient of the James Randi Educational Foundation’s Media Pigasus Award.)

But I’m guessing the customer was assuming that if people use bizarre “all-natural” remedies, then stores would not sell as many manufactured remedies. Hey, if I want salicylic acid (the stuff in willow bark and spirea that acts as a pain-reliever, fever-reducer and anti-inflammatory), then I will buy it as acetylsalicylic acid, AKA aspirin, because that formulation is less harsh on the digestive system, and you know how much active ingredient you’re getting.

When one of the pharmacists was no longer directly busy with [other] customers, I went up and told him about the customer enquiry. His eyebrows danced a bit at this latest oddity.

“The only thing I’ve heard about taking colloidal silver,” I began, and then the pharmacy intern nearby then chorused with me, “Was about the guy who turned blue!”

“It bio-accumulates, doesn’t it?” I asked, and the pharmacist nodded. That of course, was why I was careful to not let any dots of the lab stuff stick to me. Plus, any clean crumbs re-deposited could be re-used, especially if I held the bottle to the vibrating vortex mixer.

Note: there are antibacterial uses for various ionic silver (Ag+) compounds, such as silver nitrate (AgNO3), but the colloidal stuff is non-ionized metallic form, which has a different biological effect. Of course, poison is always in the dosage — too much silver nitrate can be equally bad. You can read about the hazards of argyria here at the Quackwatch site.

Oh by the way — if you want an “all-natural” remedy for the ordinary sore throat, may I recommend some strong mint tea with honey?

With a price tag like that, you know it’s what’s best

Would you pay more for name-brand headache medicine than the generic or store brand?  If your budget is like mine, probably not; after all, the tablets are the same, it’s just the packaging that’s different.

But on the flip side, what if your favorite practitioner recommends an expensive treatment that will help you or your loved one recover from a chronic condition? Not surprisingly, treatments with higher price tags make patients feel better, even when there are not any differences in the treatments, nor even when the treatments are just placebos!  Per research by Waber et al., (“Commercial Features of Placebo and Therapeutic Efficacy”)

These results are consistent with described phenomena of commercial variables affecting quality expectations and expectations influencing therapeutic efficacy. Placebo responses to commercial features have many potential clinical implications. For example, they may help explain the popularity of high-cost medical therapies (eg, cyclooxygenase 2 inhibitors) over inexpensive, widely available alternatives (eg, over-the-counter nonsteroidal anti-inflammatory drugs) and why patients switching from branded medications may report that their generic equivalents are less effective.

In other words, patients perceive more expensive treatment as being more effective.  This is in many parts “research as confirmation of what we already know”, also known as “A Duh! Study”.  (Which is why it was in the 2008 Ig Nobel Awards.)  However, this preference for expensive treatments can also be a post-purchase rationalization, where we have the unconscious tendency to rationalize why the things we have paid for were such good choices.

Human beings are subject to a large number of cognitive fallacies and biases of judgment.  We unconsciously deceive ourselves in a number of ways, which is why scientists must use randomized, double-blinded, and repeatable studies with falsifiable hypotheses. (The word “falsifiable” is somewhat confusing or misleading; it simply means that the hypotheses can be proven wrong, which is statistically safer than trying to prove them correct.)

Our brains love to find patterns — that’s how we make sense of all the sensory input we’re bombarded with — but we will also see patterns even when they don’t exist.  Even the most earnestly objective researcher can misinterpret incomplete data, or give more attention to data that supports their hypothesis than that which doesn’t.  This is why double-blinded studies are important, so neither the study subjects nor the data gatherers know who is in the treatment or the control groups.

Naturally, shysters will take advantage of people by Read the rest of this entry »

The sum of good intentions

Feel free to insert the more familiar or acceptable word of your choice.  But regardless of your word choice, the equation stands:

Good Intentions plus Bullshit still equals Bullshit

It doesn’t matter if you are a parent earnestly trying to help your child improve lagging developmental skills — if the information you are disseminating to newbies or news agencies is based upon bogus treatments and world-wide conspiracy theories, then the information you are giving others is still bullshit. (Example: vaccines cause autism and/or dozens of unproven “cures” for all sorts of developmental/educational difficulties.)

It doesn’t matter if you are an elected official trying to get funding for projects that could potentially improve the local economy — if your cherry-picked “experts” assert that there are no ecological problems, but the overwhelming majority of experts from agencies around the world say there will be serious consequences, then your assertions are still bullshit.  (Example: Sarah Palin on global warming, oil pipelines, and polar bears.)

It doesn’t matter if you are a news reporter trying to ensure “balanced coverage” of a story by quoting from “both sides” — when one of those “sides” lacks credibility and just presents distraught protagonists ranting over perceived injustices because fact-based reality keeps intruding upon belief systems based upon magical thinking and millenia-old folk tales, then your editorial judgment is weak and the news is full of bullshit.  Respecting others’ feelings and beliefs does not mean that those should usurp sound legislative, educational or economic practices, or be allowed to trump everyone’s civil rights.  (Example, Creationism/Intelligent Design being taught in science classes.)

Nope; the earnestness and good intentions part cannot gloss over the huge piles of bullshit.  Crap is still crap, and the best thing we can do with crap is to put it with the rest of the dead stuff and compost it, until the bacteria and worms and arthropods have broken it down into something useful.

The 3-pound Exemption (disembodied woo)

You gotta feel sorry for Topeka, Kansas. The state’s capital city is not only home to the infamous Fred Phelps and his Westboro Baptist Church, and has recently been the battleground for Intelligent Design vs Evolution counter-counter-legislation by the school board (currently with the majority ruling pro-science), but now the capitol is host to the paranoid propaganda by the CCHR. CCHR is the Citizens Commision on Human Rights, which despite the generic name is really just a front for Scientology. Their exhibit is titled, “Psychiatry: An Industry of Death” (well, no hidden biases there). Correspondent for the Kansas City Star newspaper, David Klepper, writes that the “the Capitol sees its share of traveling displays and wandering weirdness”. He notes that any group that can pay the fee is allowed to put up a display as long as it is not obscene, and describes the content thusly: Read the rest of this entry »

My Own Dream

Here in the States, today is Martin Luther King Jr Day, a “bank holiday” honoring the civil rights leader. This means that as a school employee, I get the day off, which in turn means that I have the opportunity to not only contemplate civil rights, but also run errands to places I can’t go because my work hours are the same as their business hours. The exceptions of course are my bank where I need to visit my safe box, and a couple of colleges where I need to visit with people about getting teaching certification. Holy conundrums, Batman!

Anyway, reading through the news brought several things to my attention, and helped clarify some of my own dream for humanity, especially with regards to both diversity in academia and the rest of the work world, the academic responsibility for preparing our students, and the social and political valuation of real science.

Firstly there is the need Read the rest of this entry »

“Superstition ain’t the way”

Very superstitious, writing’s on the wall.
Very superstitious, ladder’s ’bout to fall.
Thirteen-month-old baby broke the looking glass.
Seven years of bad luck, the good things in your past.
When you believe in things that you don’t understand, then you suffer.
Superstition ain’t the way.

(Part of the lyrics to “Superstition” by Stevie Wonder)

I recently heard on BBC Radio 4 news a story about an effort by the AfriKids organisation located in Ghana. From the AfriKids Web site, they explain:

… a child born with deformities or defining characteristics in the area was considered a ‘spirit child‘ who must therefore not be allowed to live with humans, for fear they will bring bad luck into the lives of the family. Such children, the paper gathered, were subjected to various forms of inhumane treatment aimed at terminating their lives.

To prove their innocence, the deformed infants are given deadly locally prepared concoctions, which the people believe can only kill ‘spirit children’.The practice has been with the people for ages. Until the interventions of some NGOs including Afrikids, the people in the area generally accepted the practice as a traditional norm, which should be conserved and continued.

There are a number of reasons why a child may be born with various deformities, including random genetic chance, maternal malnutrition, and diseases such as polio or rubella. Of course, polio and rubella can be prevented by vaccination. Other news in recent years included Nigeria, where polio vaccines were strongly resisted by local authorities (this article from New Scientist, 18 November 2003):

Laboratory tests by Nigerian scientists have dismissed accusations that the polio vaccine given in a mass immunisation campaign in the country is contaminated with anti-fertility hormones and HIV.

The World Health Organization (WHO) drive to rid the world of polio hit a major obstacle in October when immunisations were suspended in three regions in northern Nigeria due to rumours that the vaccine was laced with the HIV virus and hormones to render women infertile.

Some Islamic clerics suggested the vaccine is part of a Western plot to depopulate Africa. However, test results from experts recruited by the Supreme Council for Sharia in Nigeria gave the all-clear on Tuesday.

“The vaccine is free of any anti-fertility agents or dangerous disease like HIV,” said Abdulmumini Rafindadi, at the Ahmadu Bello University Teaching Hospital in Zaria, according to the Nigerian newspaper The Guardian.

But before you start getting cocky from your ethnocentric place in some Westernised, “first-world” country, stop and remember: superstition isn’t just for the illiterate third-world masses. Cloaked in modern pseudo-science or religious devotion, it’s enabling our neighbors to abuse and kill children.

Consider Amy Burney, a five-year old girl from the Bronx (New York City) who was poisoned in April 1997:

Convinced that the child was possessed by demons, Angelee Burney and Ms. Downing forced her to drink a toxic brew of ammonia, pepper, vinegar and olive oil, the police said. The women wrapped her body in a floral sheet and tossed it in the garbage bin outside their apartment building in the Kingsbridge section, the police said.

Consider Terrance Cottrell, an eight-year old autistic boy from Milwaukee who was suffocated during an exorcism.

When Junior arrived at the Faith Temple Church he was asked by the minister to lie on the floor. The boy’s trainers were removed to lesson the blows of his kicks. Sheets were also wrapped around him to stop him scratching. During the “prayer” service, Hemphill reportedly used one hand to hold Junior’s head to the floor and one knee to press down on to the boy’s chest. Cooper, meanwhile, held one of Junior’s feet while Tolefree held the other. Another woman, Monica Carver, was lying across the boy’s chest. All the while, Hemphill whispered into Junior’s ear, ordering the demons to leave him. Junior apparently struggled throughout, with Cooper and Tolefree occasionally losing grip of the boy’s feet and the 157lb Hemphill having to bring Junior forcefully under control.

It was only after two hours, however, that the adults noticed Junior was blue in the face, soaked in his own urine and not breathing. When Hemphill heaved himself up, both he and the boy were drenched with sweat. But the boy’s body was lifeless.

Or an un-named 14-year old autistic boy who was severely beaten during an eleven-hour exorcism during August of this year.

Police say the exorcism turned violent and that Uyesugi, under the guise of ‘God’s work’, battered and beat the boy.

“Sticking fingers into the boy’s mouth while he was restrained on the bed, causing him to vomit. And this happened several times. Family said that Mr. Uyesugi told them this was to cast the demons out,” said Detective Swain.

Police say Uyesugi also punched the autistic teen in the face during the ritualistic beating that lasted for eleven hours.

And of course, there are plenty of well-intentioned but misguided parents in the US and UK who refuse to get their children vaccinated for fear they might “catch autistic”, thus allowing the recent outbreaks of measles and mumps, and the resulting disabilities and deaths as described in this previous post.

Oh sure, we’re all intelligent, well-educated peoples. No one does horrible things here like they do in other parts of the world.

Don’t you believe it.

When you believe in things that you don’t understand, then you suffer.
Superstition ain’t the way.

Epidemiology Bass-Ackwards

Again.

A short news item caught my attention today. Unfortunately, it looks like a fabulous example of bad science, with lousy sampling methods, correllation trying to equal causality, and a heavy dose of confirmation bias. Add in a big dose of well-connected media personalities, and it’s absolute chum-bucket for indiscriminate news sharks.

Dr Lawrence Rosen thinks there is probably some kind of “environmental problem” causing an “autism cluster around St. Anthony’s school in Northvale”, New Jersey. Why is that? “The initial study included interviews with 24 current or former school employees who had children after working at the school. Their 42 offspring included 24 with developmental disorders — and 10 of them have autism.”

Oh, and “The school serves children with autism and other learning disabilities.” Are we not surprised. ( /dry humor )

Saying that something around the school “causes” large numbers of autistics (et cetera) is like saying that swimming pools “cause” large numbers of bikinis. Read the rest of this entry »

Oh no, here we go again …

A recent report claims that autistic children improve when they have a fever:

Fevers could actually improve autistic behavior in children, new research suggests, hinting at the possibility of a biological cause behind the disorder that has proved so difficult for experts to understand.

Researchers from the Kennedy Krieger Institute in Baltimore report that autistic children who are sick are less likely to make repetitive movements, use less inappropriate speech and are not as hyperactive as they normally behave.

Shocking news, that — feverish children are less hyperactive. Feverish children are just less active in most ways, because they feel crappy!

You can just see it coming on the horizon — more junk “biomedical treatments” to “cure” autism. Snake-oil salesmen will be sticking kids in saunas and trying to induce fevers or whatnot. Nevermind the disclaimer way near the bottom of the article:

In the meantime, however, experts warn that parents should not induce fever in their children or withhold medical treatment to replicate the reported improvements in behavior.

:: sigh ::

Centenary Retrospective

“This process of the good life is not, I am convinced, a life for the faint-hearted. It involves the stretching and growing of becoming more and more of one’s potentialities. It involves the courage to be. It means launching oneself fully into the stream of life.”
~ Carl Rogers

Wow. The other day I was looking at my blog stats, and it said that I had 22,000 hits. I have also recently written my 100th post since June; that’s close to thrice a week, for the mathematically disinclined. So I thought I would take a step back and review what has gone by, to see what kinds of topical trends emerge, and pull up some of what I think are the better posts, for those of you who are newer visitors.

Bloggers are usually loquacious and opinionated, a description I do not fail to meet. But why do I blog? Some bloggers just natter about their lives, others blog as an outlet for kvetching, some are pushing a specific agenda, and still others like to analyse what they see. I do a little of all the above, but mostly I like to analyse. I am less concerned about persuading you than I am about giving you something to think about. After all, if we all believed the same things, the dialogues would get pretty dull!

Now that there is data from which to draw a pattern, what kinds of things do I blog about? In a way it is hard to sort posts into single categories, because topically there is an n-dimensional hypervolume of intersecting sets. But as an approach, I like to explore themes from personal experience or news events, and also from philosophical perspectives. I feel that philosophy loses some of its significance without grounding it in the phenomenal fields of people’s lives. And telling stories of lives without examining the what and wherefore of those events falls short of the ultimate value of storytelling: revealing the patterns in human relations, and learning from them.

Some of the greater categories revolve around education, from both student and instructor perspectives, and they revolve around the politics of disability and advocacy. In contrast, there are some themes that connect those categories. One of the most important themes is taking the traditional understandings of how social systems work, and taking those apart to reveal very different perspectives on what is happening.

These systems include how we communicate, such as when the language of “choice” is really just a distractor, or doublespeak meant to transfer the apparent (symbolic) power to the one person who in actuality has little power over the situation. These systems also include power paradigms, including how we “help” people, how people miss the mark when trying to create “inclusiveness”, and why pity is such a evil force because it creates distance between people. (There is no need to congratulate me for having “bravely overcome” the insults and artificial obstacles that people put in my way.)

I also look at how the assumptions we make determine how we define groups of people, from the way that we create diagnostic labels, to the sometimes-absurdities of “person-first language”, and concepts of “tolerance”.

In the end, we don’t need better ways of “beating” the system, because we are all part of the system, and the beatings must stop. (They haven’t improved morale yet.) What we need are ways of overhauling the system by sidestepping these terrible games and introducing different ways of working together.

Our perceptions of the world influence how we act, including how we view and understand others. Sometimes people mistake better identification or newer kinds of identification with “epidemics” of autism, AD/HD et cetera. But I bet if we’d had these kinds of identifiers decades ago, a lot more of us would have been better understood. Hyperactive kids are kind of hard to miss, even those who otherwise do not misbehave. (You wouldn’t believe how many ways there are to sit inappropriately!) More boys than girls are diagnosed, but I have to wonder if that isn’t due more to diagnostic criteria than actual prevalence rate. Why didn’t we see kids with these kinds of “needs” in previous decades? Partly because some of those kids didn’t even go to regular schools — they were kept at home or in institutions. Those who did go to regular schools just had to struggle along. They rarely had IEPs and such because their parents didn’t – couldn’t – ask for services that simply did not exist.

When we make these changes in understanding systems and in our perceptions, they can be outwardly expressed by seeking to become a better advocates. Being able to create a new rôle for one’s self includes being able to learn about the various rôles that others have played. (But just try to find sources on disability studies at the local bookstore!) Advocacy requires overcoming inertia and moving into commitment, and moving into commitment and inclusiveness. We also have to be able to recognise our own sources of ability and power, especially if we’ve been convinced otherwise.

Advocacy is complex, and the concerns of parents for the futures of their disabled children is an important part of that. Unfortunately, people whine about how hard it is to have an autistic child, or any kind of exceptional child. All too often there are terrible news reports about parents who have killed their handicapped or autistic children because they were such a horrid burden. Even more horrifying is when the press perspective or quotes are full of sympathy for the murderer because killing your own child is “understandable” because a person can’t help but be insanely stressed from dealing with the child’s abnormality.

It’s hardly not a new trend. But this millennia-old attitude does a terrible disservice to disabled people everywhere to be cast as either devils or angels. It is dehumanizing, and removes us from our humanity, and thus our basic human rights. In light of the fact that many things have a genetic basis, then hating disabilities in our children involves a curious kind of denial and self-loathing.

Distraught parents also need to understand that there is a difference between getting cured and being healed. The unresolved grief leaves parents susceptible to errors of judgment, and these well-intended but scientifically ignorant people who buy into these things are being duped by charlatans, sometimes with loss of life as well as with great monetary expense. Then the problem is propagated because those well-intended but scientifically ignorant people become meme agents, earnestly spreading the false gospel. Meanwhile, the rest of us are left to weed out the “Astroturf” of faux grass-roots efforts.

Advocacy efforts include those in our schools, and involve administrators, educators, parents, and the students themselves. Sometimes teachers and parents worry about school accommodations because they fear it will leave the students unready for when they have to venture into the “real world”. Or, by misunderstanding the differences between equity, equality and need, teachers fear that giving accommodations “wouldn’t be fair” to the other students.

Parenting our students with learning difficulties is not easy – the traditional methods do not work, which is often why the students end up in “special” education. In turn, the students also get frustrated, and attempts to deal with the unmotivated student can sometimes create further problems. We also have to be careful to distinguish between challenging our students, and just making things more difficult for them. Distinguishing between cause and effect in misbehaviour is important – we need to address the causes to resolve problems.

The teaching end of things can also be rife with issues, and college professors can sometimes fall prey to pedagogical myths. Equally absurd is how learning difficulties are often not recognized until the student has been failing or near-failing for a while, thus allowing the student to get further behind and more entrenched in negative mind-sets. On the flip side, we identify exceptionality by contrasting it to what’s common for the group, or by how well a person functions. But what if our sampling group is far from average, or if the environment is less disabling?

Tutoring and teaching is another means of engaging in advocacy, and one of the best means I have is to share with my students the tools for how they can solve new kinds of problems in the future, for themselves and by themselves. It also gives me the opportunity to constantly learn from my students. During this co-educational process, we often need to figure out where in the learning process they are getting stuck, then come up with different ways of helping them learn new information, and different methods for studying. Sometimes the educational changes we make can be as simple as the way a test is typed up, making it more accessible to all the students. The way the audio-visual equipment is set up also makes a significant difference, including the kinds of computer monitors and lighting used. As a tool for engaging your students’ attention, novelty can be a big help. It can also backfire in unexpected ways…

On the more personal scale, I’m always seeking better ways of dealing with my own challenges of “Executive Functioning”, like dealing with all the stuff, stuff, stuff that piles up, losing something in the Dreaded Safe Place, coping with the inertia of task paralysis, or just getting “stuck” when the Plan B falls apart or I unexpectedly get engrossed in something. In worse cases, this means pulling myself out of an awful case of the Betweens, which condition you won’t find listed in any manual, but one that any ADD or autistic person will surely recognise. Regardless, it still helps to remember that strategies for compensating are just that – and that when there’s too much load on the system, those strategies won’t all succeed. That makes it difficult for me, but sometimes others’ lack of understanding is the greater problem.

When I sat and contemplated my place in the grand scheme of things, I found myself wondering just how it was that I could be “doing things the wrong way” and yet still be producing the right results. Were the processes really as important as the results? Doing things “normally” is very important to the general public. People with a wide variety of differences go to extreme effort trying to “pass for normal”, but this can be perilous. Some parents spend great effort to ensure their autistic children learn how to do “good eye contact”, but this may be a poor goal for some unexpected reasons. People can get hung up on developmental timetables, or they worry and wonder why their child likes to spend lots of time lining things up (it’s a good thing, really).

Adults can come up with some pretty off-the-wall assumptions about what is, or is not, going on in a child’s head; we cannot always assign mental processes to the results we see. Then there’s the situations that an earnest-yet-clueless ADHD or Aspie kid can find themselves in, such as failing to cheat. The really scary part is how these children who have difficulties socialising with their peers will fall prey to bullying and abuse, and general depression. Then we grow up into adults, and there’s the whole sticky territory of trying to make Small Talk, and the repercussions of just having a different sense of humor.

On the lighter end, a few posts are just for fun; about once a month there’s a “Recess”. Recess means we take a break and play – it’s important to do that once in a while. During dinner our family discusses why “resistance is fruitile, and how to be “underly pedantic”. Meanwhile, I have fun with repeating words, and enjoy taking photographs of improbable things.

My thanks to you for stopping by, and please to leave comments!

andrea

Whining From Another Hysterical Female

Don’t get me wrong — I’ve actually had good results with most of the professionals whom I have seen. It would be rather a fallacy to broadwash a whole bunch of specialists on account of a few fools. But boy, when you run into an fool, it’s usually a doozy!

It’s been a long few years getting various difficulties sorted out and identified. Over a year ago I saw someone who was touted at being an expert on learning disabilities, to investigate ongoing scholastic difficulties and possible auditory processing difficulties.

Well, I saw Dr S. (a PhD, not physician) when I was otherwise free from the bulk of my work and school activities, as at the time I’d been having a number of health problems, including insomnia, migraines, worse tics and stuttering, hyperacusis & tinnitus et cetera.

I brought in with me documentation including previous test results, transcripts, and descriptions of my difficulties. This was because I can often get tangled up and forget stuff when trying to explain things, especially to doctors. (Hey, I’m an organism capable of learning — over time I’ve realised that remembering stuff is a problem, so now I take in a list or hand over a page of notes. My new primary physician does great with this, because in the couple of minutes it takes her to read a few paragraphs, we can fast-forward through a lot of rote questions, without omissions.)

Dr S. had me fill out a couple of online tests, and then had someone else administer some more tests to me. Oddly, one of the tests he gave me was for ADHD, for which a coöperating team of a psychologist and psychiatrist had already evaluated me. In fact, he said I had no ADHD and no real problems, except a little figure-ground discrimination hearing things in noisy environments. He had no recommendations, except that I needed to see a psychiatrist for psychosomative disorder.

Well, hell. Was I bordering on depression? Yes, and I knew that and was working actively against that — half a year of chronic sleep-deprivation and pain will do that to a person. Was I having difficulties with my husband? Yes, my health problems were requiring me to take a semester off school and work, and he was wanting to know “when I was going to be a productive member of society”. I already knew about these things, and had explained to Dr S. that I was working to deal with them. But that wasn’t why I was seeing Dr S. — I was trying to address learning and hearing comprehension problems. I even paid a few hundred dollars out of pocket for all that.

There’s a big problem here, and it’s not mine. Nor am I the only one with it.

The word “psychosomatic” has gotten warped or twisted. It literally acknowledges the interdependency and functionality of brain/mind and body, but now has come to mean that problems are “all in your head”, as in imaginary and/ or self-inflicted.

They used to call women “hysterical” and thought it due to having a uterus that “wandered around the body”. Holy cows. Obviously I’m not hysterical. (Hell, I don’t even have my uterus or ovaries any more, due to cysts and endometriosis.) So now they say that women who have problems have “psychosomative disorders”.

The issues with my husband were not seen as his difficulties in accepting my disabilities, but as evidence of my mental disorder.

The near-depression I was facing was not from months of chronic insomnia and pain, but rather caused by my mental illness.

The documentation I had brought with me to aid the man in his understanding of my problems was not data, but symptoms of my mental illness.

I was seen as “attention-seeking” rather than as solution-seeking.

Shit like that can drive a person nutz.

The good news from all that was that I got a referral to a CAPD specialist who said that Yes, I definitely do have such problems, and could even recommend some concrete ways of dealing with the problem and gave me documentation for such. But it makes me wonder, if Dr S. couldn’t really diagnose such, why did he put me through tests for APD, and tests I didn’t need for ADHD?

Has it ever occurred to clinicians that many of their clients don’t exhibit stress symptoms due to having psychosomative disorders, but rather than having various (unacknowledged) disabilities will make a person stressed?

It’s all ass-backwards. Shit like that can drive a person nutz.

Bibliomeme

Mum-is-thinking tagged me to answer a book survey. My answers are a motley collection, and I think that motley collections are always the most interesting. I’m guessing that people like to read these kinds of meme-tag surveys because they either want to hear how others have loved the same books they have, or else want to hear about books they had not yet (or possibly would not have) encountered, but would also enjoy.

One book that changed my life
I’ll have to take this is “one of many” rather than as “the one with the greatest impact” because surely different books have had done this at different stages in my life. There are a lot of contenders for books that were the first (if not always the best) to open up my knowledge-base to completely new fields of understanding, such as those on AD/HD or autism. Those are valuable in that regard, but more important are the books that give a different kind of insight, looking behind social paradigms to critically analyse the how and why of human interaction.

For the way that humans interact with their environments, Donald A. Norman’s The Design of Everyday Things looks at the problems that bad design causes people, and how people assume that their difficulties are considered to be their fault, rather than bad design. He touches but lightly on the issues of handicap accessibility, and I don’t think he mentions Universal Design at all, but the central message is still the same. My inner geek adores good, useful, imaginative and æsthetic design, and it drives me nutz when tools, machines or environments are badly designed.

For the way that humans interact with medical & emotional health care providers, Paula Kamen’s All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, And Only Slightly Enlightening Headache that describes some of the problems with the medical models of psychology, such as being a problem patient rather than a person with a problem, or the need to find “cures” for everything when instead one can be helped and be healed without being cured.

Strong messages from both of these books.

One book that you’ve read more than once
Who doesn’t have a comfily-tattered set of J.R.R. Tolkien’s four-volume Middle Earth trilogy? (Yes, trilogy means three books, but The Hobbit is part of the Lord of the Rings, and science fiction & fantasy is rife with trilogies composed of more than three volumes.) For my favorite re-read when stuck abed with a nasty virus, I really enjoy Anne McCaffrey & S.M. Stirling’s The City Who Fought. It’s a fun piece of adult science fiction with the well-drawn characters and nitty-gritty techy details and swashbuckling action that make for a engaging read.

One book you’d want on a desert island
Most people like to pack either something really long, or else an extensive practical reference book. But I don’t think that I’d want to be stuck with some interminably long piece of fiction, no matter how well-written, and I’ve probably read enough references over the years that I could eventually solve any manner of functional issues. What I want would be a huge book of blank pages, so I could keep a journal of thoughts about various things. It’s often difficult for me to work out mental explorations without a written medium. I’ll remember or figure out the right knots for lashing together poles, but being able to compose my thoughts is integral to my equalibrium.

One book that made you laugh
Terry Pratchett’s Mort was the first Discworld novel I ever read, and Death is still my favorite character, possibly because he’s so practical and the human world doesn’t always make sense to him. Plus, he talks in ALL CAPS. Soul Music is damn funny, too. I love the puns and unexpected turns in Pratchett’s books.

One book that made you cry
Ebbing & Gammon’s General Chemistry (sixth edition). The authors of this uninspired, heavy tome had an interminable number of equations to solve. I made it through four semesters of chemistry and sweated through this volume for half of them.

One book you wish you had written
Actually, I’m still compiling thoughts for my next book. I don’t tend to dwell on wish-I-had’s.

One book you’re currently reading
I never read just one book at a time, which explains why it takes me so long to finish anything! I just finished Joseph P. Shapiro’s No Pity. I’m furthest into Majia Nadesan’s most interesting Constructing Autism, which I will finish as soon as I remember where the hell I left the book laying about.

Currently my bedside pile contains: Thomas Skrtic’s Behind Special Education, Alfie Kohn’s What Does It Mean to Be Educated?, Kegan & Lahey’s How the Way We Talk Can Change the Way We Work, Marshall B. Rosenberg’s Nonviolent Communications, Fisher & Shapiro’s beyond reason, and Walter Kauffmann’s translation of Basic Writings of Nietzsche (maybe after finishing the book I’ll be able to spell N’s name without looking it up every time). I had just started on Richard Dawkin’s The Selfish Gene and then my daughter took it back with her to college; bad girl. By default I’m also reading Hardman, Drew & Egan’s Human Exceptionality: School, Community and Family because it’s my current textbook.

One book you’ve been meaning to read
The future pile-by-my-bed: Daniel C. Dennett’s freedom evolves, John H. Holland’s Hidden Order: How Adaptation Builds Complexity, Douglas R. Hofstadter’s Gödel, Escher, Bach: An Eternal Golden Braid (I think that one may take a study-buddy to gain the most benefit), the Routledge Critical Thinker’s series editions about Gilles Deleuze, Jaques Derrida, and Michel Foucault, Eli Maor’s e: the Story of a Number, and David Darling’s Universal Book of Mathematics. Doubtless there’s more, but that’s what’s on that section of my bookcase.

Tag five other book lovers
Anna, Catana, David, Liam, and Whomever wishes they’d been tagged but felt like they needed some kind of “official” sanction to simply write and post a list!

Cognitive Bias, Patterns & Pseudoscience

(It’s been a long, long day. So here’s an only-slightly-used, gently-recycled essay, but with an Brand New! hyperlink for your enjoyment. Bon appétit!)

“It has been said that man is a rational animal. All my life I have been searching for evidence which could support this.”
~ Bertrand Russell

Here’s our new word for the day: pareidolia. It comes from the Greek, para = almost and eidos = form. The word itself originates in psychology, and refers to that cognitive process that results in people seeing images (often faces) that aren’t really there: the man or rabbit in the moon, canals or face on Mars, faces of holy people in tortillas or stains in plaster … It also sometimes refers to hearing things that aren’t really there in random background noise (Electronic Voice Phenomena: EVP). Pareidolia is what makes Rorschach inkblot tests possible (attribution errors are what make Rorschach tests fairly unreliable).

The human brain is “wired” to see patterns, especially those of faces. Creating and perceiving patterns is what allows all animals to operate more efficiently in their environments. You need to be able to quickly find your food sources, your mates, your offspring, and the predators in the busy matrices of sensory inputs. Camouflage relies upon being able to become part of a pattern, and therefore less recognizable. Aposematic warning coloration, such as black and yellow wasps, does the reverse, by creating a specific kind of pattern that stands out.

Sometimes people subconsciously assign patterns and meanings to things, even though they don’t intend to do so. This is why we have double-blind studies, so the people who are collecting the data don’t unconsciously assign results to the treatment replications by increasing or suppressing or noticing effects in some trial subjects. Prometheus has a lovely blogpost about this: The Seven Most Common Thinking Errors of Highly Amusing Quacks and Pseudoscientists (Part 3). (This series of his just gets better and better!)

Seeing patterns can lead to weird cognitive biases and fallacies, like the clustering illusion, where meanings are falsely assigned to chunks of information. The fact is that clusters or strings or short repeats of things will naturally happen in random spatial or temporal collections of objects or events. A lot of people think that “random” means these won’t happen (which makes assigning correct answers for multiple choice tests an interesting process; students get suspicious if they notice too much of a pattern and then start out-guessing their correct answers to either fit or break the perceived pattern).

Sometimes the reverse can happen, where instead of seeing patterns in data, people put some of the data into patterns. This is known as the Texas Sharpshooter Fallacy: a cowboy randomly riddles the side of a barn with bullets, and then draws a target where there is a cluster of bullet holes. People will perceive a pattern of events, and then assume that there is a common causal factor to those, because of the perceived pattern. This is why statistics was invented – to suss out if there is a pattern, and how likely it is. Mathematics takes the cognitive kinks out of the data so the analysis is objective, rather than subjective.

Statistics also gives research rules about how best to proceed in experiments, to avoid various errors. One of those is deciding what kinds of analyses will be used for the type of data set that is produced by the experimental design. Note that this is decided beforehand! The reason for that is because people want to see patterns, and (even unconsciously) researchers want to see results. The purpose of testing for a null hypothesis is to try to disprove the given hypothesis, to avoid these kinds of issues.

It doesn’t matter how noble your intentions are – wrong results are still wrong results, no matter how they are achieved, or to what purpose.

To look at the data and then start picking through it for patterns, (“massaging the data” or “datamining”) is inappropriate for these very reasons. The greatest problem with doing analyses retroactively is that one can end up fitting the data to their pet theory, rather than testing the theory with the data. Mark Chu-Carroll’s post on the Geiers’ crappy and self-serving data “analysis” is an elegant dissection of how this kind of gross error is done. (Note that is MCC’s old blog address; his current blog is here at ScienceBlogs.)

Doing this intentionally is not only bad statistics, it’s bad science as well. The results come from anecdotes or data sets that are incomplete or obtained inaccurately. Correlations that may or may not exist are seen as having a common causality that also may or may not exist. It’s pick-and-choose and drawing erroneous, unsupported conclusions. People want to see patterns, and do. Even worse, they create patterns and results.

The seriously bad thing is that con artists and purveyors of various kinds of pseudoscience do this a lot. The intent is to deceive or mislead in order to sell something (ideas or objects or methods).

The people who then buy into these things then think they are seeing treatment results because they want to see them. Take this secret herbal cold medication, and your cold will be cured in just seven days! (Amazingly, one will get over a cold in a week anyway.) Give your child this treatment and they will be able to learn and develop normally! (Amazingly, children will learn and develop as they get older, for all not everyone follows the same timelines – developmental charts are population averages.)

Meanwhile, the well-intended but scientifically ignorant people who buy into these things are being duped by charlatans, sometimes with loss of life as well as with great monetary expense.

Economists will tell you that the cost of something is also what you did/could not buy, and when time and money is spent on false promises, it deprives everyone involved of the opportunity to pursue truly beneficial treatments.

Then the problem is propagated because those well-intended but scientifically ignorant people become meme agents, earnestly spreading the false gospel …

Is That Ringing Sound … the one in my ears, or cash registers?

Every now and then I will buzz around the Web to see what the latest absurdities come ducking out of the quack pond. There are the inevitable villains that “cause” AD/HD or autism: mercury, food colourings, French fries … I shit thee not! Maybe it’s that theoretical autistic lack of imagination, because I never, never would have associated the consumption of French fries with Asperger’s. <Blogger falls of rocking chair laughing> I won’t give these fools the page hits by linking to them; it’s at autismfries dot com.

Meanwhile, back at the ranch…

Then there are the oddities in my life that make life less-than-thrilling, such as the tinnitus, hyperacussis, tics, and migraines. The personal testimonial story at tinnituscure dot org is probably one of the longest I have yet to read. They have a homeopathic remedy that “heals damaged nerve endings in the inner ear” and another one that will “actively stimulate the hypothalamus”. Gee, if they can restore damaged nerves, maybe my hubby will no longer need his hearing aids, and then I won’t have to listen to the occasional feedback squeal, either.

Apparently an “integrated” facial massage at Integrative Manual Therapy (centerimt dot com) will resolve hyperacussis “The body is always speaking volumes of information that provide incredible diagnostic tools. Integrative Diagnostics focuses on listening to that information. As a simple example each system in the body has its own unique circadian rhythm–a more subtle version of the way in which the vascular system presents a distinct heartbeat for diagnosis. Integrative Manual Therapy practitioners utilize advanced yet gentle palpation techniques to “listen” with their hands to all of these rhythms. In doing so they determine whether each system is in optimum flow or suffers anomalies and impediments.” How sweet. They also have classes available: “Health professionals come to CenterIMT to learn Integrative Manual Therapy from a wide variety of career backgrounds. Physical Therapists. Occupational Therapists. Doctors. Speech Therapists. Massage Therapists. Chiropractors. Athletic Trainers. Naturopaths. Homeopaths. Nurses. Dentists.” Don’t forget the books, and oh, green tea for sale, too.

(Oops, ADHD moment here – how long has this mug of Earl Grey been steeping?)

Moving right along, lessee… how about Tourette’s being caused by a “phlegm mist of the orifices”? (itmonline dot org) Ooh, this is treated with acupuncture and herbal mixtures, including scorpion. Fond as I am of arthropods, I’ll pass on that one. That reminds me, someone out there was researching Botox for tics – I could imagine someone taking that route for something like a cheek tic, but I’m not a neurologist, so I don’t understand the physiology of how it would help say, my shoulder-jerk tics or nose-tapping tics. (Then again, I don’t think that I’m dx’ed as full-fledge TS; the tics aren’t obnoxious enough. They can make singing along in the car more entertaining, though, especially after a long, tiring day at work.)

Speaking of music, apparently listening to a CD will cure migraines, “Like all our binaural beat recordings, simply slip on your stereo headphones and press the “Play” button on your CD player. The binaural beats will automatically begin affecting your brainwaves, and you’ll soon realize the benefit – no more headaches and a clear, fresh mind!” (binaural-beats dot com) Other CDs are available for balancing your chakra points, taking a power siesta, and more: “Brainwave entrainment is used in treatment of depression, low self-esteem, attention deficit disorder, drug and alcohol addiction and autism, to name a few.”

I’ll pass. When I want to sort out my brainwaves, I take a more traditional method: staring off into space and rocking. The tinnitus becomes less noticeable, the tics calm down, and sometimes I can damp the entrenched sort of migraine. Now there’s an approach to relaxation that merits some serious study.

Weeding Out The Astroturf

This seems like an especially apropos subject to blog about; I am after all, a horticulturalist and also work with children who have developmental disabilities, some of whom are autistic/Asperger’s. As a freelance writer with degrees in science, my goal is to provide useful information to the public that is unbiased, based on good research science, and is not created to promote commercial products. In the classes I teach, the articles I write and the conversations I have with others in my community, I am constantly working to correct the misinformation given by the likes of J. Baker, who flog books full of quackery, self-promotional videos and broadcast programming, and present pseudoscience as special, secret knowledge that only they have access to because the “experts” don’t want the public to know. More details deconstructing this kind of bunk are on this page.

I really, really don’t like inauthentic stuff. I like fields with real grass, and floors with real carpeting. Astroturf and indoor-outdoor carpeting rub me the wrong way, even when I have my shoes on. More inauthenticity includes advertising, propaganda and campaigning presented as vox populi. (Sorry, I guess the word “propaganda” in that list is a redundancy.) “Advertorials” and “astroturf” efforts exasperate me.

When used outside of sports arenas, the term “astroturf” refers to faux grass-roots efforts. These activities are meant to seem like they come from the general populace, when in fact they are really self-promotional campaigns sponsored and instigated by businesses. The purpose of astroturfing is to spread a commercial meme, sliding it under people’s advertising radar by presenting it as originating from other ordinary people, rather than from its true source.

Real grass-roots efforts (as organizers everywhere will attest) are nearly always blessed with thin wallets but loads of volunteers. In contrast, astroturf efforts frequently have plenty of funding to support a small but carefully-led group of workers. The whole “autism is vaccine induced / mercury poisoning and we need to cure our stricken children with X, Y and / or Z treatment” crowd is a prime example of small-time astroturfing by the various quacks who are selling purported “cures”. Some of the workers in this whole fiasco are journalists / media people and medical personnel, who end up adding their skills and patina of respectability.

In an effort to “get the word out”, the workers are advised how to get the attention of unwitting television reporters to and create the angst-ridden, “small person vs big bad government / organization” newsbites that will sell airtime for broadcasting companies; are given sample letters to send to the local newspaper editors; and are provided with Web boards that purport to be helpful consumer sites and support groups for concerned families sharing information, but are also fronts for promoting commercial enterprises, e.g. quack “cures” and dubious treatments.

The insidious problem with stealth astroturf is that the people involved don’t realize they’re being duped. Full of earnest, well-intended zeal for spreading the gospel, these followers are very convincing and energetic, in ways that ordinary paid employees wouldn’t be.

Now, those Web sites can contain a lot of useful advice and emotional support between ordinary people posting there. But some of those members will find the boards are also bastions of groupthink, enforced by a booster club of the vociferous few who create an atmosphere that is hostile to disagreement. The zealous may also go beyond the bounds of their own personal expertise and become self-appointment experts simply by dint of experience rather than by professional expertise.

It gets worse. Beyond promoting commercial products and services, astroturfing seeks to champion not just the social but also the legal necessity. This requires selling the whole system of ideas to the mass-market culture as the beneficial and inevitable solution to what is actually an artificial need for a non-solution to a nonexistent problem. Therefore we have “autism epidemics” resulting from “poisoned” children, or those who assert that ABA is a “medically necessary” treatment for “afflicted” children.

The ordinary citizen or government official doesn’t understand the scientific or educational issues, and doesn’t have the time to educate themselves to a level necessary to be able to critically analyse the claims. When faced with the inevitable scientific debunking of either the problem or the solutions being sold to address them, these quacks find that they must fend off potential legal actions by expanding into pre-emptive damage-control: (emphasis mine)

As WKA Communications stated in a brochure distributed at Key West, “We’d Rather Guard the Border Than Fight the War.”
“If you don’t keep an ear to the ground, or ignore what you hear, the results aren’t pretty,” the brochure states. “In terms of time, energy and cost, the difference between early-stage issues management and late-stage crisis management is the difference between guarding a border and fighting a war. It’s easier and less expensive to influence an outcome before the government has written the law or regulation.

In these cases, the question parents, educators, therapists and government officials must ask themselves is, “What is being sold here, and who ultimately benefits?”