not syncing

We took Jaiden to the hospital this morning for his scheduled 6:30am procedure. He was put under full (general) anesthesia so that he could have dental work done and have his ears checked (he stuck something in his ear a few months ago and we hadn't been able to get it out).

Turns out he had around 15 little plastic beads from inside a ripped stuffed animal in *both* of his ears. Combined with some ear wax this resulted in both of his ears being plugged and sealed off, preventing air exposure.

He also had 8 baby teeth (top/bottom left/right molars) capped with stainless steel and one white filling put on/in a permanent molar.

From start to finish it went better than we expected and he's now at home in bed, resting comfortably... until his meds wear off, at least.

Jaiden's 8th birthday is today. It's hard to believe he's 8. Parents always say that sort of thing as their kids get older, but this is especially hard to believe. I have an eight year old son I've never had a conversation with. I don't know his fears, his hopes... I don't know what he knows and what he doesn't. And this is the bright side. On the dark side I have to wonder... will he still be living at home in 8 more years? Or will he be 200lbs and violent and, therefore, medicated and institutionalized? Or... will he learn to sort out and organize his perception of the world around him and learn to communicate fluently - if not verbally, then via keyboard?

But - right now, at this moment, he is happy. He likes his new chair and his new flip-flops. The sun is out, the hose is endlessly fascinating... his life is good. Today. At this moment.

A 6-year-old girl died Sunday after she went missing and wandered through fences and closed gates to a nearby pool, in which she drowned.

[...]

"They did everything they could," Hagan said. "It was a horrible tragedy. The fences were locked, the gates were shut. It was just a tragedy."

She was autistic.

(And yes, I'm fully aware that typical 6 year-olds drown in pools too.)

Story.

It's been a while since I've commented on the whole autism/vaccine issue. The position I've long held is one of skepticism toward the popular arguments on both sides of the debate. And lets face it, there are some real wacko conspiracy theorists among parents of those with Autism. That's generally not conducive to being taken seriously.

The issue of autism and vaccinations is one of the most politicized scientific and medical issues around. Consistent with politics is the tendency to only hear from the extremists while the truth is likely somewhere in the middle. Also, as is often the case in politics, the various interested parties tend to talk past each other and/or from completely different perspectives without acknowledging the underlying conflicting presuppositions. It's hard to tote the party line *and* engage your idealogical opponents at the same time. Conciliatory exchanges are few and far between.

Anyway... a recent event gives me the opportunity to comment on this further. Following is an article about the event authored by Associated Press Medical Writer, Mike Stobbe. My commentary is interspersed.

ATLANTA -- The parents of a girl who won a government settlement described how their hearts were broken as they watched their healthy, red-haired toddler transformed into an irritable, odd-behaving child after she got several childhood shots.

For what it's worth, we can't point to anything like this with Jaiden. There is no single correlative incident we can point to as a marker for the beginning of his regression. There are several things we're suspicious of - ranging from his mom having the flu while pregnant with him, to a weird virus he had at ~3 months, to vaccines. The underlying common thread here is the immune system, where genetics surely play a leading role.

"Suddenly my daughter was no longer there," said Terry Poling, the girl's mother, in a news conference Thursday. She and her husband Jon said their daughter Hannah, now 9, has been diagnosed with autism.

Again, there was no "suddenly" for Jaiden.

The government has agreed to pay the Polings from a federal fund that compensates people injured by vaccines. The amount of the settlement hasn't been set yet. U.S. officials reject the idea that vaccines cause autism, but they say that in this case the shots worsened an underlying disorder that led to autism-like symptoms.

This is hilarious. What is the difference between "autism-like symptoms" and "autism"? This is a disingenuous statement at best. If it fits the DSM-IV criteria for autism, guess what... it's autism.

The Polings said five simultaneous vaccinations in July 2000 led to Hannah's autistic behavior. She was about 18 months at the time.

U.S. health officials have consistently maintained that vaccines are safe, and the head of the Centers for Disease Control and Prevention said Thursday that there was no change in that position.

OK, fine. Define "safe". There is a federal vaccine-injury fund for a reason. To simply say "they're safe" does not tell the whole story.

"Nothing in any of this is going to change any of our recommendations" about the importance of vaccines for children, said Dr. Julie Gerberding. "Our message to parents is that immunization is lifesaving."

Which is completely reasonable, in my opinion. The federally-defined and mandated mass vaccination program is the cornerstone of health care in the US (and similarly throughout the world). However, what is not often stated is that mass vaccination is an attempt to achieve heard immunity. It is completely understood and expected that there will be some adverse reactions to vaccines. Mass vaccination has the best interest of the heard in mind, not the individual. The extremely small percentage of people damaged by vaccines are considered collateral damage in the war against population-extinguishing disease. Or at least, that is ideally the case. Without getting into a whole other discussion, I'm of the opinion that we over-confident about the efficacy of vaccinations. We vaccinate for too many things, we don't fully understand the inner workings of the immune system, we don't fully understand the extent to which we're creating a bigger problem over time with vaccine-resistant diseases, we don't pay much attention to the immunology of the individual before vaccinating, we vaccinate when it's inadvisable (e.g. kid already has a fever), etc. etc. etc.

The point here is that the medical community and the federal health institutions don't respond lightly to the charge that 1 in 150 kids are having an adverse reaction (autism) to vaccines. And I think they're right to respond this way. It's not that simple. Autism isn't that simple. It's not monolithic and likely has several different causes. Unfortunately, due to the political nature of this debate and the far-reaching consequences, there has been a reluctance to admit that vaccines *might* play *any* role in *any* autism cases. Ever.

In the Polings' first appearance since their case became public this week, the Athens, Ga., couple acknowledged their legal case never got to the point where evidence was argued.

They called on the government to remove thimerosal - a mercury-based vaccine preservative - from all flu shots. Thimerosal has already been removed from other vaccinations given to children.

I totally agree here. This is just dumb - and worse, it's unnecessary. There are other preservatives and other ways to distribute the vaccine. Of course, this would cost more money...

"Why take a chance?" asked Jon Poling, a 37-year-old neurologist.

$$

Not merely "a neurologist", this guy has an M.D. and a Ph.D. He's in the Department of Neurology and Neurosurgery at Johns Hopkins Hospital. In 2006 he published a study about his daughter and her condition in the Journal of Child Neurology. Conveniently, his wife is an attorney. It would seem these folks are not lacking in brain power.

The Polings, accompanied by Hannah, said that as a toddler, their daughter was a bright child who could whistle on command. But almost immediately after the vaccinations nearly eight years ago, she became feverish and irritable. Then, her behavior gradually changed so she would stare at fans and lights and run in circles.

"It wasn't like a switch being turned off. It was more like a dimmer switch being turned down," Jon Poling said.

Government health officials conceded that the vaccines exacerbated an underlying condition and that she should be paid from the federal vaccine-injury fund.

Autism advocates called Hannah's case a "landmark decision," although the Polings' own attorney disputes that.

I'm with the attorney's on that one, though I do think it's important.

"This was not a court decision," said Clifford Shoemaker, who is based in Vienna, Va. The U.S. Department of Health and Human Services conceded the case before the court was asked to make a determination, he added.

Government officials wouldn't discuss why they conceded this particular case, but said people with pre-existing disorders can obtain compensation under the program if they establish that their underlying condition was "significantly aggravated" by a vaccine.

Medical and legal experts say the narrow wording and circumstances probably make the case an exception - not a precedent for thousands of other pending claims. "This does not represent anything other than a very special situation," said the CDC's Gerberding.

Hannah has a disorder involving her mitochondria, the energy factories of cells. The disorder - which can be present at birth from an inherited gene or acquired later in life - impairs cells' ability to use nutrients. It often causes problems in brain functioning and can lead to delays in walking and talking.

Experts argued over how common the disorder is, and by implication, how many other vaccine cases might be affected.

"Most children with autism do not seem to have a mitochondrial problem, so this association ... is probably relatively rare," said Dr. Edwin Trevathan, a pediatric neurologist who heads the CDC's birth defects center.

Yeah... "seem" and "probably" don't cut it, though. Let's figure it out definitively, shall we?

The United Mitochondrial Disease Foundation, a Pittsburgh-based group that raises money for research, says there are more than 100 types of mitochondrial disease, and genetic tests can find only a couple dozen.

The Polings were exploring two theories about what happened to Hannah. One is that she was born with the mitochondria disorder and the vaccines caused a stress to the body that worsened the condition. The other was that the ingredient thimerosal caused the mitochondrial dysfunction, Jon Poling said.

The former strikes me as more likely, but who knows...

Since 2002, the preservative thimerosal has been removed from shots recommended for young children, except for some flu shots.

The flu shot... one of the most over-hyped vaccines...

What bugs me the most about this issues is the authoritarian and condescending arrogance of the scientific and medical community - or perhaps more accurately, doctors who don't know the difference between medicine and science and erroneously fashion themselves scientists. The "scientists" know everything and the parents are ignorant and desperate fools.

If only more well-respected neurologists would have kids with autism... maybe we'd get to the bottom of this. (For the humor-impaired readers, this is hyperbole... I wouldn't sincerely wish that on anyone.)

See also this statement from Autism Speaks.

For those who don't know, there are a large number of people with autism or aspergers who think that, rather than a case or broken biological development in need of fixing, autism is simply a particular manifestation of neuro-diversity. In other words, they say, "quit trying to tell me there's something wrong with my brain because it's not like yours - I like mine the way it is, and There's Nothing Wrong With That." There's an inherent problem here... they're called Autism Spectrum Disorders for a reason. I posit that if you can maintain a functional place in society and communicate to me your opinion on this matter, you don't have the type of biological issue people are trying to "fix". You may have an ASD, but you're still close to being within the norm.

In general, though, I tend to agree with the "critics of the difference model" as cited in a recent WIRED article:

But critics of the difference model reject the whole idea that autism is merely another example of neuro-diversity. After all, being able to plan your meals for the week or ask for directions bespeak important forms of intelligence. "If you pretend the areas that are troubled aren't there, you miss important aspects of the person," says Fred Volkmar, director of Yale's Child Study Center.

In the vast majority of journal articles, autism is referred to as a disorder, and the majority of neuro-psychiatric experts will tell you that the description fits — something is wrong with the autistic brain. UCSF's Merzenich, who agrees that conventional intelligence-testing tools are misleading, still doesn't think the difference model makes sense. Many autistics are probably smarter than we think, he says. But there's little question that more severe autism is characterized by what Merzenich terms "grossly abnormal" brain development that can lead to a "catastrophic end state." Denying this reality, he says, is misguided. Yale's Volkmar likens it to telling a physically disabled person: "You don't need a wheelchair. Walk!"

Meanwhile parents, educators, and autism advocates worry that focusing on the latent abilities and intelligence of autistic people may eventually lead to cuts in funding both for research into a cure and services provided by government. As one mother of an autistic boy told me, "There's no question that my son needs treatment and a cure."

What the neuro-diversity crowd seems to not appreciate is that social norms are just that... norms. Whether you are outside them or not is not a matter of opinion or neurological philosophy. To the extent that your biological development renders you unable to function within the societal norm you are, by conversion, abnormal. That makes your biological condition a "disorder" and it should be "fixed" if possible. (Presupposing that being a functional member of society is a "good" thing.)

Another thing that bothers me about the neuro-diversity crowd is that they seem to deny the existence of the truly tragic and severe cases of the disorder. They tend to not blame such cases on the biological condition, but instead on the failure of those around the person to appreciate, understand and adapt to the "unique qualities" of the "affected" person.

Note: If you read the full article, and you're not already familiar with her, I recommend taking anything related to Amanda Baggs (most of the article) with a large dose of salt. I'm not willing to call her a fraud, but her developmental and psychological history is far from the autistic norm, to put it mildly.

ScienceDaily (Feb. 12, 2008) — New research from the UC Davis M.I.N.D. Institute shows that an interaction between fetal brain cells and maternal antibodies could be linked with the repetitive behavior — also called stereotypies — that is characteristic of autism. While additional studies are needed to confirm the outcome, this result leads investigators to suspect that brain-directed antibodies during the prenatal period could be a causal factor for the disorder. The study appears online now and will be published in a future issue of Brain, Behavior and Immunity.

I'm glad some autism research continues to focus on the immune system. There are two reasons for my glee. One is that I think it will be a fruitful path to understanding autism (the gene pool my autistic son drew from contains some severe immune issues and it would not surprise me if the key to autism lies there). The other reason stems from the fact that the the immune system is one of the least understood systems in the human body. A great side effect of this line of investigation into autism is a better understanding of and appreciation for the intricate complexities of the human immune system in general.

Yep. We've seen this. And it can't be completely explained away by lethargy. We mentioned this to our pediatrician several years ago. He thought we were nuts. We have a different pediatrician now.

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.

Children with Autism Architect Their Ideas Using 3D Design Software

NEW YORK (CNN) -- Michelle Hammond and Jeremiah Holland were intrigued when a friend at the Oakland Tribune asked them and their two young children to take part in a cutting-edge study to measure the industrial chemicals in their bodies.

"In the beginning, I wasn't worried at all; I was fascinated," Hammond, 37, recalled.

But that fascination soon changed to fear, as tests revealed that their children -- Rowan, then 18 months, and Mikaela, then 5 -- had chemical exposure levels up to seven times those of their parents.

"[Rowan's] been on this planet for 18 months, and he's loaded with a chemical I've never heard of," Holland, 37, said. "He had two to three times the level of flame retardants in his body that's been known to cause thyroid dysfunction in lab rats."

The technology to test for these flame retardants -- known as polybrominated diphenyl ethers (PBDEs) -- and other industrial chemicals is less than 10 years old. Environmentalists call it "body burden" testing, an allusion to the chemical "burden," or legacy of toxins, running through our bloodstream. Scientists refer to this testing as "biomonitoring."

Most Americans haven't heard of body burden testing, but it's a hot topic among environmentalists and public health experts who warn that the industrial chemicals we come into contact with every day are accumulating in our bodies and endangering our health in ways we have yet to understand.

"We are the humans in a dangerous and unnatural experiment in the United States, and I think it's unconscionable," said Dr. Leo Trasande, assistant director of the Center for Children's Health and the Environment at the Mount Sinai Medical Center in New York City.