Potpourri

Updates on several stories:

In a post from almost a year ago (“That Kind“), I discussed three cases of discrimination against autistics. Cindy Earnshaw was an animal control officer and has Asperger’s, and is now filing a suit against her former employer, the city of Overland Park.

Another old post (the wheels of law grind v e r y slowly, indeed) was about “Waiting For GINA”, the Genetic Information Nondiscrimination Act.  The bill passed the House of Representatives last year, and has just been passed (unanimously!) by the Senate, and awaits signing by Dubya.  Keep your digits crossed or whatever …

More good news:  just in case you were flying ’round the dark side of the moon and somehow missed the news, Kathleen Seidel has won her Motion to Quash the absurd SLAPP-type subpoena against her, which also required information related to dozens of bloggers from her of the Neurodiversity.com Weblob blogroll, including myself. w00t!

An update to a recent post, “A shot in the arm, A slight kick in the butt” about vaccine hysteria and rising rates of highly-infectious and dangerous diseases.  A couple years ago we had mumps breaking out in several states, and now there is largest outbreak of measles since 2001, with at least 72 people in 10 different states around the country reported as having been infected (mind you, that’s just the rate of officially diagnosed and reported, which may be less than the actual prevalence), and of those people, 14 are so ill they had to be hospitalized.  The article states,

Before a vaccine was introduced in 1963, more than half a million people got measles in the United States and 500 died annually. Thanks to the vaccination program, measles is no longer endemic in the United States, and ongoing transmission of the virus was declared eliminated in 2000.

Of all the infectious diseases that can be prevented by vaccine, measles was and still is the most deadly, and is the cause of half of the one million deaths that could be prevented. The World Health Organization says that,

Children usually do not die directly of measles, but from its complications. Complications are more common in children under the age of five or adults over the age of 20.

The most serious complications include blindness, encephalitis (a dangerous infection of the brain causing inflammation), severe diarrhoea (possibly leading to dehydration), ear infections and severe respiratory infections such as pneumonia, which is the most common cause of death associated with measles. Encephalitis is estimated to occur in one out of 1000 cases, while otitis media (middle ear infection) is reported in 5-15% of cases and pneumonia in 5-10% of cases. The case fatality rate in developing countries is generally in the range of 1 to 5%, but may be as high as 25% in populations with high levels of malnutrition and poor access to health care.

I’ve also previously described the various fallacies around the conspiracy theories related to vaccines in my post, “Epidemics of bad science, vs Epidemics and bad science”. There have been studies done in four countries showing no causality between vaccines and increased rates of diagnoses of autism spectrum disorders.

Well, off to deal with the crisis du jour … more later.

“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 »

Update

Woah, the timing of this AP news article was incredible, “Parents avoid vaccinations by claiming false religious exemptions”. It’s an excellent follow-up to my previous post on “My student is missing”. (My student came back the next day.)

Many states are seeing increases in the numbers of parents who do this.

“Do I think that religious exemptions have become the default? Absolutely,” said Paul Offit, head of infectious diseases at Children’s Hospital in Philadelphia, one of the harshest critics of the anti-vaccine movement. He said the resistance to vaccines is “an irrational, fear-based decision.”

Of course, the problem with highly infectious diseases is that no one is an island. You’re not just making a decision about your own health.

But public health officials say it takes only a few people to cause an outbreak that can put large numbers of lives at risk.

“When you choose not to get a vaccine, you’re not just making a choice for yourself, you’re making a choice for the person sitting next to you,” said Lance Rodewald, director of the CDC’s Immunization Services Division.

My student is missing

Just one of my students. I heard that he didn’t come to school today because he’s not up on all of his vaccinations. I don’t know if that is something intentional by his family, but I kinda doubt it — he’s in high school, which means he’s had years of previous vaccinations accounted for. Probably people got busy and forgot to take him in to the doctor or the county clinic to get whatever’s due at his age.

Like other school districts in the state, this one requires that the students be fully vaccinated per the list issued by the state health department. There’s a 60-day period after the beginning of the school year for students to get caught up, and after that date, students don’t get to attend until they’ve done so. (There is also an exception clause allowed by the state, requiring that abstaining parents or guardians to provide a medical exemption signed by a MD/DO every year, and they sign a religious exemption. Note that the doctor has to be an actual physician, and that the child is getting regular medical attention, to help insure some baseline of health monitoring. Note also that the parent also has to claim exemption for religious reasons, not just because they think that vaccines might be more dangerous than the long list of highly infectious and sometimes debilitating or deadly diseases.)

So naturally, my children have had their various vaccinations over the years. In recent years I’ve also had the MMR, at the tender age of 45. Why? Read the rest of this entry »

Epidemics of Bad Science vs Epidemics and Bad Science

Here’s a hot topic constantly resurfacing in the news, especially with the Omnibus currently proceeding at the US Court of Federal Claims, to wit: Is autism caused by vaccines? I won’t pretend that I’m going to capture everything in this controversy; there are too many players in the drama. (Autism Diva is keeping track of the daily news on the hearing.) However, this does make for an excellent case study in the scientific method. We get to look at concepts like incidence & prevalence, correlation vs causality, testimonials vs evidence-based medicine, and some general concepts in epidemiology. Could we possibly have any more fun?! (tongue-in-cheek joke)

When you read about autism, something noted most everywhere is the increasing numbers of children diagnosed. Surely, people say, there has to be something causing that to happen!

The whole vaccines-causes-autism story starts back in 1998, Read the rest of this entry »

Greed Speaks: Fundraising for Nonprofits, Megachurch-Style

While reading Ginger’s rundown of the Autism Speaks annual IRS (US federal tax) Form 990, it occurred to me that this organisation conducts its financial operations in many of the same ways as do some of the less-savoury megachurches. (I’m not against religion in general or any particular religion, but recognise that churches are run by humans with typically human failings, and that big-scale churches and big egos can result in big-scale failings.) That probably seems like a really odd analogy, but there are a number of parallels, all of which are disquieting. (As another parallel, in the US both churches and nonprofit organisations are exempt from paying federal income taxes.)

Here’s the pathological model of the megachurch fundraising style: Read the rest of this entry »

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