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What is in a number?

25 Sep

As just about any parent in the US (and probably a lot elsewhere), “what is the prevalence of autism and you will get a nearly instant response, “1 in 150”.  They may know that this is also 6.6 per 1,000.  They will probably know that it was reported as 1 in 166 before that, and so the numbers are climbing.

Ask the same parents, “Where is the prevalence highest?” and you will probably hear, “New Jersey”.  They will probably know that it is 10.6 per 1,000 there, or more that 1 in 100.

Ask the parents, “What group had the lowest prevalence?”  My guess is that few will answer.  Some might recall that Alabama reported 3.3 per 1,000. 

Even that is pretty staggering:  Alabama has less that 1/3 the prevalence of New Jersey? Why aren’t people from New Jersey flocking to Alabama to avoid autism? Why isn’t moving to Alabama high on the Generation Rescue protocol for avoiding autism? Why isn’t anyone asking Congress to study “Autism amongst the Alabamans”?

Take a closer look, though.  Include subgroups.  Include ethnicity.  Who then has the lowest reported prevalence?  Almost no one knows.  Take a look at page 18 of the MMWR report by the CDC on autism. Who has the lowest prevalence?  Hispanics in pretty much everywhere checked.  More to the point, Hispanics in Wisconsin have 0.3 per 1,000 as the reported prevalence.

No, that isn’t a typo.  0.3 per 1,000 lowest compared to 10.6 per 1,000 as the highest:  a factor of 35 different.  It’s a factor of 22 lower than the national average.

Drop the Amish!  (well, since no one has ever bothered to ask their permission, don’t start with the Amish!) Let’s do a study on the Hispanics of Wisconsin!  Demand that your congressman/woman support a bill to study Autism in the Wisconsin Hispanics!

Maybe we will find out they don’t vaccinate!  Maybe we can spend $200,000 on a phone survey!

Maybe the numbers aren’t accurate.

The thing is, it is so obvious that no one commented on this.  For those invested in the epidemic, the reasons are fairly likely the obvious.  You can’t claim an epidemic with innacurate numbers.  You really can’t if we are still in catch-up mode to identify subgroups.

If we do a better job identifying people with autism, the numbers go up. Simple.  It could be hiding an increase in real prevalence.  Heck, it could be hiding a drop, for all we know.  You don’t need enough scientific background to even understand an “r” value to get that.

This isn’t news to the real front line.  Take a look at page 19 of the 2003 report on Autism by the CDDS.  Between 1987 and 2002 the total number of people served under autism by the CDDS increased by 733%.  That supports the epidemic, right?  But, at the same time, the numbers of Hispanics went up by 1,743%! 

How could this happen?  Were Hispanics more susceptible to the vaccines in the 1990’s, causing their numbers to skyrocket?  If so, why is the fraction of Hispanics served in the Regional Centers lower than the White fraction?

You don’t have to speculate, the CDDS tells us:

Increased efforts on the part of regional centers over the past 15 year to reach specific ethnic groups may have contributed in part to the proportional increase in Asians and Hispanics with autism entering the system.

Increased efforts results in higher numbers identified.  Not a tough one to figure out.  Just like increased awareness results in higher numbers identified.

Sorry all you epidemic believers.  If you really believed your own story you would have made a big deal out of the low numbers amongst Hispanics in Wisconsin and called for a study to understand their “resistance” to autism.  But, then you would have to admit that part of the reason the numbers in California went up was better identification amongst minorities. 

The thing is, we need to make a big deal out of these numbers.  It is shameful that we are allowing a large amount of our people to go unidentified.

That’s one big problem with the epidemic party line.  It allows, heck it requires, that we neglect the fact that we are undercounting and underserving people.

That is just plain wrong.

What if you could prevent autism?

21 Sep

What if you could prevent autism?  What if there were a way that people could dramatically reduce the number of people born with autism? What if it took a concerted effort on the part of everyone to make it happen?  Should we do it?  Would people complain?

Would we respect the lessons of  the past if it had already happened?

Well, it may have already happened.  “May” as in it requires correlating one set of trends with California DDS numbers on Autism.  We all know how dangerous that can be.  CDDS data are not epidemological.  They don’t tell you how many people in California have autism, they tell you how many people in California are getting services under autism.  People who forgot the importance of that distinction have found themselves promoting an epidemic that didn’t happen. 

With that lesson in mind, let’s look at some CDDS data.  Let’s look at the number of clients with autism by birth year.  Further, let’s look at these data as they looked in 1986.  That is pre “epidemic”.  Pre DSM-IV.  That is before schools added autism as a separate category. 

  CDDS autism clients by birth year as recorded in 1986The data show something I didn’t expect: a drop in the number of autism clients.  Not just the noise that gets those promoting the epidemic to say, “look from one quarter to the next we see a drop”.  Nope, this looks like it could be the real deal, that elusive goal of those claiming an epidemic.  It happened in the 1970’s. 

Keep in mind that these data are from 1986.  So the drop in numbers in the 1980’s is because those people hadn’t been identified yet.  It isn’t “real”.

Also, keep in mind that these are raw numbers.  No attempt to normalize into a rate (individuals with autism per 1,000, say) has been made.  California went through a notable population increase over this time.  So, any drop in rate estimated (from these non-epidemological data) would be even greater.

Given this great amount of limitations, take a look at this graph.  These are the autism clients by birth year as reported in 1986.  The data are noisy, but I see a big plateau for kids born in the 1960s with about 100 clients per birth year followed by a second plateau in the 1970’s at about 75 clients per birth year.

That is an indication that there may have been  a roughly 25% drop from one decade to the next in the number of people with autism.   What happened?

Rubella prevalence in the USWell, since I recently posted about the dangers of only digging deep enough to support your own pet theory (and that is good advice), I’ll put this forward as a “Medical Hypothesis”.  Consider this: the Rubella vaccine was licensed in the U.S.  in 1969.  What happened before that?  There was a Rubella epidemic in the 60’s.  Lot’s of kids were born with CRS, Congentital Rubella Syndrome: a known cause of autism.

What if the Rubella vaccine is reducing the number of kids born with autism?  Wouldn’t that be a good thing that should catch the attention of the “autism community”?  It is a little strange that one would have to use this route. Keeping Rubella at bay results in a lot fewer deaths, including the unborn.  Also, fewer would become deaf, fewer would have congenital heart defects.

From the CDC:

The greatest danger from rubella is to unborn babies. If a woman gets rubella in the early months of her pregnancy, there is an 80% chance that her baby will be born deaf or blind, with a damaged heart or small brain, or mentally retarded. This is called Congenital Rubella Syndrome, or CRS. Miscarriages are also common among women who get rubella while they are pregnant.

I would have thought that would be enough to get the point across: Rubella is something to prevent.  Perhaps the vaccine is a good thing?  Perhaps it is working?  I don’t think there is any “perhaphs” about it.  Overall, preventing Rubella is a great thing.  But some people seem to want to deny that vaccines even work.

Take a very rough estimate.  Assume from these data that 25 people a year in California alone have had autism prevented by the Rubella vaccine.  From 1970 to 2007, that works out to 675 people.  And that is just a secondary benefit.

Maybe by calling the Rubella vaccine “preventing autism” it will catch the eye of those who have somehow forgotton how bad this disease is.

The Wizard Of Oprah

21 Sep

Hey, it’s Thursday evening. Why don’t we stop by and see what the cat dragged in over at Rescue Host. Holy Vaccinations Batman! It’s more autism epidemic gibberish! The current installment comes to us from Kelli Ann Davis, who writes:

I knew the day was coming. With numbers like 1 in 150 children and 1 in 94 boys, “it” was bound to happen.

Her “it” apparently refers to the recent appearances of some fellow believers on daytime television. Davis goes on to share some apparent feelings of vindication:

I must of recited “the-numbers-are-getting-larger-and-our-voices-are-getting-louder” mantra at least a bazillion times over the last 5 years, cuz that’s how many meetings it feels like I’ve been in. but it never seemed to resonate.

There’s a good reason it probably didn’t seem to, for Kelli Ann, and doesn’t resonate in general. It’s because there isn’t any data that shows that “the-numbers” are actually getting larger. There is no question that there are indeed many more people being diagnosed as “on the autism spectrum”. But the thing is, the very definition of what professionals say autism is, changed dramatically in the not too distant past – even the conceptualization of autism as a spectrum of disorders is relatively recent development.

I think there’s a reasonable explanation for many of the “vaccines dunnit” voices getting louder. I’ve noticed a similar phenomenon in my own household, and I’m even guilty of it myself from time to time. Sometimes people craving attention (or just needing to be listened to) get louder and louder. Do four or five little children always calmly discuss who should get to go first in a game? Do they always rationally reason with each other about who should have the biggest piece of cake? What about children competing for the attention of a parent? Do they always stop, raise their hands, and quietly wait their turn? My opinion is that it’s often natural to shout. Shouting doesn’t automatically make one incorrect in their assertions, but it doesn’t make one correct either. It’s just shouting.

The difference here is that while shouting like children may garner attention, it does not change scientific reality. It just doesn’t matter if there are a million voices reciting the mantras of a flat earth, an autism ‘epidemic’, or flying saucers. No quantity of repetitive nonsense will construct any assertion’s truth. Without evidence that it is true, a failed hypothesis is doomed to the clutches of a handful of village idiots – and probably inevitably, a few celebrities too.

What does Kelli Ann have for us to demonstrate that “the-numbers-are-getting- larger”? Will it be daytime TV demagoguery?

Okay. So now “it” has arrived….in full Oprah force…..and I’m anxious to see if the “powers that be” FINALLY get “it.”

Ah, the “Appeal to Oprah”. Extremely similar to a simple appeal to popularity, but garnished with a household name that’s guaranteed to stir emotion and draw both media, and popular attention.

Kelli Ann might as well just write:

“Cuz everyone knows, “if you seen ’em on Oprah, they must be right”.

Should the “powers that be” Kelli Ann refers to, whomever or whatever that means, be worried if they don’t “FINALLY get it”? Only if they pay attention to that TV personality behind the curtain. Let’s hope they aren’t fooled into asking for a brain, heart, courage, or a trip home, and instead, ask to see everyone’s data.

Is it Kirby Season Again?

21 Sep

Well, it’s September, nearly time for the California DDS to put out the latest quarterly reports.  That means it’s nearly Kirby “spin the numbers” season.  What spin, you may ask?  Last time, David Kirby announced that the numbers may be going down.  At the same time, Rick Rollens noted that they were going up.  Even though they were proposing  exactly opposite interpretations, both were claiming it as evidence of an epidemic.

Even though Kirby’s post was last July, some of his comments still stick in my mind.  Why?  In his reach for crutches to support the fake epidemic, he has started pointing fingers at immigrants.

Legal and illegal immigration continues to rise from countries that still use the full amount of mercury in childhood vaccines.

First consider the fact that people like Kirby and others ignored immigration when they spun the supposed increrase seen in the 1990’s it would have been inconvenient for the “epidemic”.  But, what bugs me more is the jingoistic tone. Well, it’s the tone plus the fact that he could have spent the five minutes he should have spent to realize that it isn’t supported by the facts.

Let’s face it, when you are talking about immigration in California, especially illegal immigration, you are talking about Hispanics.  Hispanics make up about 49% of the legal immigrants, and probably most of the illegal immigrants.  Another big chunk of legal immigrants are Asian (about 40%).

Mr. Kirby notes:

But it turns out that a private citizen has paid the state each quarter to analyze the autism numbers according to year of birth, and not just by age group. State law requires that such privately funded analyses be made available to anyone else who asks for it.

That does sound like some interesting data!  I will post on that shortly.  In the meantime,  let’s take a look at the data by age-group, shall we?  Let’s look at the total number of people with autism who are White as a function of time:

Kirby Season Figure 1

Wow, it just goes up and up and up.  Doesn’t stop, doesn’t flatten out.  Doesn’t go down.  Where’s the drop that Mr. Kirby sees?  If immigration is pumping up the overall numbers, I’d have expected to see a drop in the numbers for Whites.  Take a closer look: the curve isn’t precisely straight. Let’s draw a line in through the data before 2006 (data points in red) and another through the data points after 2006 (in blue).  Oh, my, the slope for the 2005 data is 848+7 and the post 2006 data is 1058+25 (in units of individuals with autism per year).

Closeup of Figure 1

The total number of Whites is not only increasing, but the rate of increase is going up too!  I don’t see how one can spin immigration to explain that.

Now, do put any significance in the change in slope?  Yes and no.  Yes, something is going on, it’s small but there is something causing changes in slope from time to time.  The real question is why?  To just say, “Well the numbers are going up, therefore my pet idea is true” is irresponsible.  One should look closer at the numbers and decide why.

That is my basic problem with the Kirby/Geier approach to “research”.  Dig deep enough to support your theory and no farther.

So, let’s look at the Hispanic population and see what is happening.  Well, there is big increase in the number of Hispanic people served by the CDDS under autism in the time period here (mid 2000 to mid 2007) the number went from 2533 to 9212.  Or, in epidemic speak, that’s a 364% increase.  By comparison, the numbers for Whites went up by 234%.

Kirby Season Figure 3

You can easily see how that could be spun into blaming the rising numbers on immigration.  If you didn’t already know about the trends amongst Whites especially.  Still, take the five minutes to look at the data closer.  Take a look at the percentage of Hispanic clients served under autism.

An increase from about 19% to 27% in just 7 years?  The increase must be those immigrants a Kirby would say.  Or, is it?  Consider that Hispanics make up 35% of the California population.  Even with this big increase, they only account for 27% of the total number of CDDS clients under autism?  The problem, Mr. Kirby, is not whether Hispanics are driving up the numbers.  The problem is that the great State of California is probably under-serving one of its largest ethnic groups!

Anyone remember Jurassic Park?  Remember the problem with their computer program that did the census on the dinosaurs?  It counted until it reached the number it expected and then stopped.  Guess what, that’s what people who rely on the CDDS numbers have been doing.  They look until they find the data that supports their theory and they stop.

The extra steps taken here go further than a Kirby or Geier analysis, but they only scratch the surface.  And, yet, I will be bold and say that it is a crime that we are undercounting and underserving our own people.  By ignoring the fact that the CDDS could be undercounting some groups, those promoting the “epidemic” helped the undercounting continue.  This despite the fact that the CDDS is actively reaching out to minority groups.

Mr Kirby ends his post with the statement:

Regardless of one’s position on the mercury-autism contretemps, I hope everyone can agree that an actual drop in the numbers, no matter what the cause, would provide a welcome respite from the endless chorus of grim news we all seem to face these days.

Well, if we had an accurate count of the individuals with autism, we could debate that.  We don’t have an accurate count.  That’s sort of the point, Mr. Kirby.  Your “gold standard” of epedimiology, the CDDS dataset, is woefully inadequate.  Once we have an accurate count of everyone and are providing the appropriate supports for those who need them, we can start talking about whether it would be good if the numbers should go down.  Until then, identifying the uncounted is a good thing.

I would add, there are causes for a drop in autism numbers that would make me very unhappy.

I would welcome an end to the “grim news”.  Any time you want to tone down the rhetoric and start working on the real problems at hand is fine by me, Mr. Kirby.

Actos – The New Fad

14 Sep

In the world of autism quackery, I’m of the growing opinion that the ‘doctors’ who play about with the drugs they experiment with on autistic kids sometimes sit around in a big club somewhere one-upping each other:

Chelation? Pfft – thats nothing. I give all my kids IV Chelation…..Oh yeah, well, I give all _my_ kids IV Chelation of garlic and vinegar….[an impressed rumble goes around the table]….thats nothing – I give my kids HBOT…..Really? HBOT? Well, I give my macaques, I mean, kids _Lupron_….

And there it rested for awhile. That is until a new kid on the block came long. Actos. What the hell is Actos? Its a drug used to treat Type 2 Diabetes. Why’s it being used to experiment on autistic kids? Well, the DAN! party line is that autism is or causes or whatever neuroinflammation. Actos reduces inflammation.

In a Newsday story DAN! doctor, Marvin Boris tells how he uses Actos all the time and in fact has co-authored a paper on its use:

Discussion and evaluation: In a small cohort of autistic children, daily treatment with 30 or 60 mg p.o. pioglitazone for 3–4 months induced apparent clinical improvement without adverse events. There were no adverse effects noted and behavioral measurements revealed a significant decrease in 4 out of 5 subcategories (irritability, lethargy, stereotypy, and hyperactivity). Improved behaviors were inversely correlated with patient age, indicating stronger effects on the younger patients.

Conclusion: Pioglitazone should be considered for further testing of therapeutic potential in autistic patients.

Happy days right?

Well of _course_ not. Would I be blogging about it if it was?

First problem I thought of was the discrepancy between sample size (25) and conclusion. At _best_ I would think of this as a pilot study.

The second issue was the utter lack of clarification regarding Actos and what exact risks were spelled out to the patients or their guardians. Actos is pretty heavy stuff.

Last week Actos received a “black box warning” from the U.S. Food and Drug Administration, the agency’s strongest level of caution. Actos, and a similar diabetes drug, Avandia, can increase the risk of heart failure, the FDA warned.

A black box warning means that the drug in question has a large black box drawn the text of the warning just to make it perfectly clear what the issues are. The warning confirms the Newsday story:

ACTOS is not for everyone. Certain patients with heart failure should not start taking ACTOS. ACTOS can cause or worsen congestive heart failure.

And whilst the study _claims_ Actos has a good safety record, what it neglects to mention is that:

Its safety in….people under 18 is not established.

So here we have a situation wherein a heavy duty drug is being used in a very off-label way, on a population it has no safety record for and which carries a black box FDA warning regarding its side effects.

Now, maybe its just me but two things strike me almost immediately about all this.

Firstly, call me silly and old fashioned, but I would much rather have an autistic kid then take a chance on having a dead kid. But maybe thats just me.

Secondly, all these parents who scream blue murder about the evil Big Pharma and complain bitterly about the safety records of thiomersal are apparently more than happy to fall into the loving embrace of this medication, made by Big Pharma and with no safety record at all.

My guess? Dr Boris wins at the DAN! bragging contest this year.

Why Aren’t You “Scared To Death”?

13 Sep

Do you miss Dan Olmsted’s writing? He now apparently showcases his version of scientific brilliance over at Rescue Host.

Recently, he tried to pass off the Flu shots and Chinese mercury hypothesis (which I thought was David Kirby’s, but I guess I was wrong) without much more than unfounded speculation and belief.

California, of course, is ground zero as we watch autism rates keep rising — even after mercury was “removed” from childhood vaccines starting in 1999 (the situation is much more complicated than that, since more and more pregnant women and younger and younger kids are getting mercury-preserved flu shots). So if you believe as I do that autism is fundamentally an environmental illness that whacks a subgroup of susceptible kids, mercury from China — or anyplace else — is every bit as important as mercury from vaccines.

I asked him the following in the comments:

If you wouldn’t mind Mr. Olmsted, take a look at a graph of the 3-5 year-old autism caseload cohort for the past 5 years.

Such a graph would include children born at the starting point of the “removal” in 1999 you mentioned. What do you see? Does the trend look linear to you?

Do you really believe there is combined flu shot uptake and airborne mercury data that would exactly and inversely match (in dose and effect, if any) the reduction the use of thimerosal in childhood vaccines in order to produce a trendline with an R-squared value of .9954 for this time period?

You can view such a graph here.

To which he replied:

An “R-squared value of .9954” is way beyond my non-scientific expertise. All I can say is that thimerosal use has actually been increasing in by far the most vulnerable group — pregnant women — and that at least some studies suggest that greater pollution directly correlates with a greater risk of autism. If the CDC had recalled all thimerosal-containing vaccines in 1999, we’d have a genuine “natural experiment.” But we don’t. Nor will the government study autism rates in never-vaccinated kids; the survey by Generation Rescue found ominous correlations between vaccines and NDs including autism, but it’s been widely ignored.

The survey by Generation Rescue? Right. Did he just make up that part about thimerosal use increasing in pregnant women? It kind of looked like it to me, so I asked and commented as follows:

What evidence do you have that thimerosal use actually increased in pregnant women for the period immediately following the “removal” of thimerosal from childhood vaccinations? (required to make your hypothesis work)

The majority of childhood vaccines were thimerosal-free or contain only trace amounts by 2002 (more on that below). Here’s flu shot uptake estimates for pregnant women for the three years that follow:

2002 – 12.4±3.9 %
2003 – 12.8±4.4 %
2004 – 12.9±5.0 %

Source

Note: there is an increase in the estimate for 2005, but children born in 2005 and later are not old enough to be reflected in the 3-5 year-old California autism caseload cohort yet. Additionally, estimates for 2006 were back down to 12.9 percent.

Source

Mark Blaxill and JB Handley showed up in the comments following that, and Olmsted apparently did not reply further. So the question of where Dan Olmsted might have found any data to make his Flu shots and Chinese mercury hypothesis plausible, will have to remain unanswered for now. But, while we’re on the subject of data-free gibberish, have a look at a piece of something posted by Dan Olmsted at Rescue Host on September 11th.

At some point, common sense has to prevail. For instance, let’s stipulate that better diagnosis accounts for a gargantuan 36 times more cases of bipolar disorder among kids over the past 10 years. That still would mean that the condition quadrupled in a decade — suspiciously, the same decade that autism, asthma, ADD, ADHD etc. soared out of sight. The deniers have to explain away every digit of that 40-fold number, because even a “mere” fourfold increase in the real incidence would be deeply disturbing. How can anyone be certain that one-tenth of that 40-fold increase isn’t actually real? And if they can’t be certain, why aren’t they scared to death?

Emphasis mine.

An appeal to “common sense” is a sure sign that what follows is probably not data that supports his hypothesis. Is common sense really the best way to arrive at correct answers about any subject for anyone, regardless of their background? What do statements like, “An ‘R-squared value of .9954’ is way beyond my non-scientific expertise”, tell us about the context to which Mr. Olmsted’s “common sense” might be reliably applied? Is autism epidemiology likely to be anywhere near Olmsted’s knowledge and expertise?

Sometimes common sense seems like a good way to operate, but the reality is that many things in science have quite complex answers. It’s also the case that science does not have all the answers (nor does it claim to). None of this will apparently stop Mr. Olmsted from forging ahead with assertion and anecdote in the rest of his post of course.

Did you catch this part of that paragraph above?

“…suspiciously, the same decade that autism, asthma, ADD, ADHD etc. soared out of sight.”

Did you see any real data or science whatsoever that actual autism prevalence “soared out of sight” in the past ten years? Me neither. So here you go any “Flu shot and Chinese mercury” proponents, now is your chance to post that real data or science in the comments – really, Mr. Olmsted needs your help if he’s to avoid the inevitable “You’ve got nothing!”. Either that, or get him a new hypothesis to work with (something with corroborative data preferred).

As for Mr. Olmsted’s final question in that paragraph, I’d like to answer it from one perspective.

We can’t be absolutely sure that there hasn’t been some real increase in autism prevalence, there might have been. To conclude that there has been a real increase in autism prevalence wouldn’t require much more than good data that shows it’s actually true. However, to conclude that there has been a real increase without supporting scientific evidence, but based on “stories”, is unscientific, if not a bit silly.

I can’t be absolutely 100% certain that an alien abduction has never occurred, but this lack of certainty does not translate to “therefore alien abductions are real”. I can’t be absolutely 100% certain that bigfoot doesn’t exist either, but again, that lack of certainty does not translate to “bigfoot is real”. I don’t live in fear of being abducted by aliens or encountering a hairy giant biped while on a hike with the kids, despite an abundance of “stories” about these things. I’m also not “scared to death” that there could indeed be an increase in the actual prevalence of autism. It is a possibility, but I have seen no evidence of it’s truth. I do see an increase in storytelling though.

JB Handley’s Emerging Hypothesis

9 Sep

The Handley’s are now proud parents to a third child. Many congratulations to them. I hope their daughter gives them as much pride and happiness as my two have given me over the years.

Of course, for JB, its all about the autism. And so, he details the steps the family took to ‘ensure’ this third child wasn’t autistic. Its, um, interesting reading.

First Brad reminisces about whats on the GR site:

It’s probably worth taking a quick step back. The Generation Rescue website spells out pretty accurately how we feel about the cause of
autism:

We believe these neurological disorders (“NDs”) are environmental illnesses caused by an overload of heavy metals, live viruses, and
bacteria. Proper treatment of our children, known as “biomedical intervention”, is leading to recovery for thousands.

Yeah, you do _now_ – it used to be:

It’s nothing more than mercury poisoning

And whilst Brad was happy to carry this simple message to the TV masses, he’s seemingly less happy to go back on and say, well no, I was wrong actually. Its in fact ‘overload of heavy metals, live viruses, and bacteria’. And as for ‘leading to recovery for thousands’…heh yeah, whatever.

But anyway, back to the Emerging Hypothesis of preventing autism. What has JB Handley come up with?

we began to develop a plan to prepare for life before and after birth that we believed would reduce the chances for another autistic child.

And what does this plan entail?

Early Preparation for Mom (prior to conception):

– Switching to a gluten/casein free diet
– Eating organic foods and avoiding all artificial colors, flavors, and preservatives
– Limiting sugar
– Focusing on gut health through a combination of anti-fungal treatment, beneficial bacteria re-population, and digestive enzymes
– Detoxifying the body through a combination of chelation and natural detoxification techniques like FIR sauna, NDF Plus, Zeolites, etc.
– Adding a pre-natal vitamin and B-12

During pregnancy:

– Maintaining all dietary approaches listed above
– Avoiding all vaccines
– Avoiding any environmental risks like lead paint, home construction, cleaners and solvents, chemicals, etc.
– Avoiding antibiotics except in life-or-death situations
– Avoiding x-rays and sonograms, unless high-risk birth issues exist
– Continuing supplementation of pre-natal vitamins, probiotics, digestive enzymes, and B-12
– Proper supplementation of mom’s methylation cycle based on genetics

After birth:

– Maintaining all dietary approaches and supplements listed above while breastfeeding
– Holding off on introducing solid-foods until at least 6 months
– Avoiding antibiotics for breastfeeding mom and baby except in life-or-death situations
– Avoiding any environmental risks like lead paint, home construction, cleaners and solvents, chemicals, etc.
– Supplementing baby with infant-safe probiotics
– Avoiding all vaccines for at least the first 2 years of life, and then taking extraordinary caution
– At the right time (typically 6 months or older), adding proper methylation cycle support
– At the right time, proper supplementation of Omega3-6-9
– Providing natural detoxification through things like Epsom salt baths

So mum has to go through an extremely rigorous program. What does dad have to do?

Nothing. Nada. Zip. Fuck all.

Children are, it seems, conceived solely by the female and thus the male’s biology plays no part. Or maybe JB just couldn’t stomach the thought that men’s sperm might play a role.

OK now, back on real street, lets look at a few things.

Firstly, this child is a third born female. Sibling risk of recurrence for autism with the previous birth of any child with autism is thought to be about 4.5% (the numbers are higher for families with a firstborn female with autism or more than one child with autism). That’s right, about 4.5%. That means that there is an approximately 95.5% chance, based on the available science, that a third child born into a family with one autistic child who is not a firstborn male, will not be autistic. Let’s say that again – a 95.5 % chance for non-autistic (maybe even higher if the child is female). From a purely statistical perspective, that’s a very high probability for a non-autistic child. (Source).

If this daughter _doesn’t_ end up being autistic, what do you think is more likely to be the reason? The +95% chance it wouldn’t have happened anyway? Or JB’s course of mummy purification?

The Myth of Recovery

1 Sep

Back in August of last year I wrote a blog entry about the Generation Rescue ‘recovery’ stories and how true recovery actually accounted for 5% of the stories on their website which I upgraded in May of this year when they redesigned their website. Their true recovery figure now stands at 7%. I even recounted how I sent my own daughters details to them under an assumed name using the exact truth about her state and condition which they duly published.

I was interested to come across some more fascinating dialogue between members of the Yahoo ABMD group – a group which believe mercury caused their kids autism and Biomed can help them. This is one of the oldest and most well regarded (amongst the mercury militia anyway) Yahoo groups.

The conversation began thusly:

From: Eva family
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 6:29 AM

the other thing that troubles me about all the “autism doctors” is that
no one seems to do any studies based on their patients. Some doctors
must have dozens of patients but there seems to be no published work
correlating their levels of minerals, reactions to diets, success of
treatments

…………

But in general J McC, Yasko etc, Buttar, the zeolite-people earn lots of
money and publish nothing except opinions………..followed by
anecdotal acclaim from those for whom they work and silent despair from
those for whom they don’t.

Being an experienced reader of the material on these groups, I silently commiserated with this poster as I waited for the inevitable flame fest. But it never happened. Here are some of th responses this post received from other ABMD members:

From: Laura K. Fischer
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 4:34 PM

Sally, this has always been a concern of mine also, I honestly don’t know whether some of these alternative doctors have any better of a percentage record in improvements then say some of the better mainstream neurologists prescribing meds or even in comparison to kids who only do therapy and educational intervention. Although I recognize that part of my skepticism probably stems from the fact that most of the kids I personally know who have done a lot of biomedical treatment (those in my local community) don’t seem to have improved any more rapidly than those who did not, there are a couple who are even worse off. There is no clear advantage that I have witnessed with my own eyes and it may be that it is because there is a tendency for many of these families to have used a couple of the same DAN doctors in this region, I recognize that this could be a contributor. But I do share your concern with this….Laura

From: Lawrence G. Leichtman, MD
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 6:40 PM

I have followed about 100 children with autism doing biomed. I have never seen a single “recovered” child if by recovered you mean normal though 8 of
the children were claimed to be recovered by their DAN doctors. I have wseen about 10-15% improved kids, some slightly and 10% of kids who were
actually worse from biomed. Of my patients using Yasko prescribed treatment alone I have seen 0 improvment out of 12 patients. I still don’t know what
works or why and this is after 10 years of doing this.

The response from Leichtman is a bombshell. If you do not recall the name, he is the doctor who was quoted in Dan Olmsted’s Age of Autism pieces as treating Amish kids (who never have autism – heh). According to his (anecdotal) opinion he has never seen a recovered child out of the 100 he has seen who have been doing biomed, even amongst those whose DAN! claimed they were recovered. Fascinating.

From: Gina Mouser
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 7:45 PM

We were seeing a very famous DAN dr. who told us that of all the 5000 plus
patients that the DAN doctor was treating, my son was the ONLY one that is
not improving.

Go figure..

Gina

This shed’s some light on the way DAN! quacks falsely inflate their patients parents with hope or a ‘convincing’ explanation. Except, judging by the tone of this email, this mum isn’t convinced.

One of the responders went on to question why Dr Leichtman was a member of the ABMD board if he didn’t believe in biomed. He reiterated his position and confirmed his belief that DAN! docs either lie or are mistaken:

I have seen positive results 10 to 15 percent is still better than 0. I just don’t believe in the total recovery claims as several of my patients were claimed to be recovered by their DAN doctors but they weren’t.

The original poster chimed back in later….

In the UK in education we have something called “value added” — this is the amount that a school has done for a child over and above what might have been expected by simple development. I would like to autistic children measured and placed at a point on a graph as they come into a
doctor (this is already done as I understand it) and then measured again after set periods. Over time that would set baselines and it would be
possible to see which doctors/treatments were giving “value added”.

I don’t understand why no one is doing this. Surely anyone genuinely “recovering” children would be all over us with data, analysis etc — so
that their achievements could be recognised, replicated and they (the doctor) could receive universal praise.

Quite. A point some of us have been making for quite some time.

Then of course, someone finally did play the PharmaShill card at Dr leichtman:

From: Marisha Taylor
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Tue, Aug 28, 2007 at 3:12 PM

I think the “confusion” is coming from you trying to turn the outcome of the study to what “you” want it to be. You & the pharmaceutical
guys would get along great -how much are they paying you on the side? Thank God you are having problems getting it published – there is no
more space for flawed studies.

The most fascinating thing about this post was the speed and weight of the responses telling her to shut up. Not what I would be expecting at all.

As part of the responses Dr Leichtman dropped his second bombshell:

I don’t even understand what you are asking. Neurotypical is average for a child their age not with sensory issues, not with hyperactivity, not with behavioral disorders. I do not include those that I really don’t believe nor does my neurodevelopmentalist believe has autism despite coming in with that diagnosis. *I see plenty of children who come in with the diagnosis who don’t have it in the first place* so improvement or not may not be valid for their issues.

This was unbelievable stuff. Straight ‘from the horses mouth’ was the seconding of the opinions that a lot of us had held for years. That some ‘recovered’ kids were never really truly autistic to begin with. I would love to know if Leichtman ever saw the Berle’s.

Anyway, as I mentioned, when Leichtman was accused of being a Big Pharma shill, the entire group sprang to his defense, including Holly Bortfield, a well known mercury mom.

From: Holly Bortfeld
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Cc: *******@aol.com
Date: Tue, Aug 28, 2007 at 3:24 PM

Wow, time to back off Marisha. Dr. L is a valued member of this list and you are out of line.

Bortfeld is a fascinating case. Later on in this discussion she says:

I know people who did only a few things and their kid is recovered and I know people who did EVERYTHING and their kid is still severe. While I do know some, they are very few in comparison, kids that are recovered. That sucks.

…………

I am thrilled for them, but my kid isn’t one of them (recovered) despite having the best of the DAN docs, virtually unlimited therapies and the “best” of everything, regardless of money, he’s still screwed up at 12 years old.

‘Screwed up’? Nice. This post was in response to the owner of the ABMD group’s post when she said:

I believe (and I’ am very cynical at this point) that most stories of “recovery” are the result of a misdiagnosis, or a mispresentation of
the facts for some financial gain.

Wow. Just….wow. These are incredible things for a ‘mercury militia’ group to be saying. If you only heard Gen Rescue etc you’d believe Brad’s oft-repeated claim of thousands of recovered kids. Its amazing to know that people of the same essential belief differ so wildly.

But back to Bortfeld’s screwed up non-recovered son. Her stance is peculiar given that, back in 2001, she was part of a discussion on the ABMD list during which she said:

Each time we deal with one of his medical problems, the features that gave him the autism label reduce. So in my mind, if we heal enough of his body, the autism dx won’t apply anymore. He went from severe (62 on the CARS) to mild (29 on the CARS) with diet and secretin. The last CARS they ran on him was a 22 so that technically doesn’t even qualify him for the autism label anymore (CARS is from 30-60) but I keep the label for services.

So which is true? That her son is ‘still screwed up’ and isn’t recovered? Or, back in 2001, that he doesn’t qualify for the autism label anymore? Interesting confirmation that Rescue Angels falsely hang on to diagnosis just to receive services as well.

I talked recently about denial. Is this discussion evidence of the rift in the mercury militia between those who have moved past most of their denial and those who can’t? Is it evidence that DAN! doctors know exactly how to play on the hopes and fears of these parents? I think so.

Acceptance not denial

22 Aug

Acceptance. It is a word that some use to describe their relationship with the reality of their children, or their own, autism. We accept the fact our daughter is autistic.

For people who claim to ‘fight autism’ this acceptance is a weak passivity. An act of giving in.

This, of course, is rubbish. Those who have accepted the reality of their own or their children’s autism know that the work starts right there. We do not attempt to carry on deluding ourselves and using quack treatments such as chelation etc as shields against the reality of who our kids really are.

Parents like Brad Handley of Generation Rescue claim at one point in time that:

“autism is a misdiagnosis for mercury poisoning…..The whole notion of autism is mythical. It didn’t exist before thimerosal in vaccines”

Source

and then later say:

The argument is being spun by focusing exclusively on a single ingredient used in vaccines, Thimerosal (which is made from mercury), while forgetting to mention a number of key points about the differences between the vaccine schedule of 20 years ago and today….Thimerosal is only one of the possible ways that the vaccine schedule could be the primary trigger behind the autism epidemic…

Source

are simply in denial. When their first belief is established to be untrue, they simply move on to another belief.

From the videos I posted a link to above, Brad is asked:

Q: This therapy (chelation) is it something he (Jamie) will be on the rest of his life?

Brad’s answer is:

A: Absolutely not. Its at maximum a two year process. Probably less.

As of next month, Jamie Handley will have been undergoing various treatments for three years. His story is not, as far as I can tell, listed anywhere as a ‘recovery’ story. He is still autistic.

Brad has made no effort to go back onto TV and explain this inconsistency. This is because he cannot. It is not explainable. I will be honest. Brad and I regularly exchange verbal barbs but I often feel sorry for the Handley’s. Because of their inability to accept the reality of their sons autism they have been unable to move on. They have instead – as I think is the case with a lot of the autism/vaccine parents – sublimated their failure to ‘cure/recover’ their kids in a proxy-fight with the ND’s, the CDC, the FDA – whatever.

I read a lot of blogs from the likes of Wade, Ginger, Kim Stagliano etc and whilst I often read about their anger and I often read about their love for their kids, I never ever read about them being happy. Do they love their kids? Of course they do. Do they enjoy their time with their autistic kids? I don’t know. I don’t think so.

There is a curious emphasis in a lot of these blog posts. Take Kim Stagliano’s most infamous blog entry – The Crappy Life of the Autism Mom – in which she says:

Recovering your kids doesn’t mean denying their value as people. To the contrary, it means we are willing to devote our lives, our savings, our sanity to their improved health, development and well being.

The jarring difference between stating that she is not denying their value and describing her life as their mum as crappy never occurs to her. It is also sad beyond belief that Stagliano feels that the measure of a persons value is the suffering of their parents.

Of course, the truth is that any decent parent will devote their lives, savings and sanity to their kids well being. That is not a situation that is the sole province of autism or even disability. Just parenting. However, I think that as well as lives, money and sanity, a parent should also invest respect and reality. Sublimating a continued tilting at the windmill of your child’s condition into an increasingly dirty and violent fight against a giant conspiracy is sad. Not sad in a sneering way but genuinely sad. It must be so miserable to be simply unable to accept the reality of the nature of your child.

This inability manifests itself in some strange ways. There have been a spate of articles fairly recently which examine the possibility that older parents are more likely to have autistic kids, or that autism might be due to a ‘corrupted’ (in the medical sense) gene. The outbursts these research papers have generated on EoH are amazing:

You forgot to mention that we’re damn old TESTOSTERONE-laden refrigerator mutant moms……………Here’s more from Autism Speaks funded research. So now the theory is it’s you damn old moms with your refrigerator mutant genes that causes autism. You are such horrible people. Tsk-tsk. Clearly, you aren’t feeling guilty enough, no matter how misplaced.

Any hypothesis which mentions or refers to parents is given equally short shrift. It doesn’t take much to work out why. Even when there is no hint of ‘blame’ (as in dear old Bettlehiem) to parents, any intimation that the genetic/physical make up of parents might have something to do with causes is pounced on and denounced in increasingly hysterical overtones.

Personally I don’t see the issue. Does it matter? No, not to me. But it seems to these parents that the idea that they might carry some responsibility for the fact their kids are autistic fills them with an utter horror. Even to the point that they have to delude themselves.

Take the cases of Erik Nanstiel’s daughter and John Best’s son. Here are two fathers who regularly sing the praises of their children’s doctors (the Geier’s and Andy Cutler respectively) and yet…

When we look back at everything we pay out of pocket… and for everything we pay as a co-pay… it’s several THOUSAND a year.

Why are we still doing biomed after six long years? Because we’ve seen our daughter go from failing-to-thrive to a pretty healthy kid. From a kid who couldn’t balance her copper and zinc… who had lead and mercury through the roof, with very little glutathione… who had constant diarrhea and wouldn’t sleep at night… and terrible eyesight…

to a kid with darn-near normal mineral levels, whose heavy metals have been more than half depleted, is thriving on a good nutritional program… and whose glutathione levels are now higher than daddy’s… is sleeping wonderfully through the night and has seen a 60% improvement in her eyeglass prescription.

She’s also nearly lost her tactile-defensiveness, loves attention (much more than before), stims a LOT less… is beginning to potty train and needs less “prompting” from us for life skills that she’s learning (like using silverware at meal time and dressing/undressing, etc.)

She is still considered low-functioning…

Like Brad and I, Erik and I have also had our fair share of verbal jousts but when I read this I want to weep. How can a man who so obviously adores his daughter fail to see that which is right in front of his face? They’ve been doing biomed for six years and his daughter is still low functioning (Erik’s words). The improvements he describes have little to no bearing on autism.

I waste no pity on John Best but once again, his denial is as plain as the autistic son in front of him:

I’ve done 55 rounds of chelation safely following the advice of Andy Cutler. My son keeps improving. I advise everyone that contacts me through GR to read what Cutler has to say and consider his protocol over what some DAN doc’s say. He has answered all of my questions at no cost and this chelation for a severely autistic child is working.

Whereas today, John made a post on EoH that stated:

In the time it took me to type my last reply, my son smeared feces all over himself and his room again. I’ve long since lost track of how many hundreds of times this has happened.

By the standards of Kim Stagliano – smearing (A Crappy Life remember) equals not cured. How exactly is the chelation working for John’s son? Or is it merely a panacea for the denial that ails his dad?

Porphyrins and autism again

16 Aug

You may recall an fairly recent exchange I had with Dr Paul King (pictured below with the invention he utilises to type his many-fonted PDF’s – The Fabulous Fontographer 2000) wherein he wrote to various media people exhorting them to examine the final proof that mercury causes autism – the existence of certain Porphyrin’s in autistic kids – following on from the science (don’t laugh) of the Geier’s and Richard Lathe et al and my responses to clarify that there had been no such proof and that the authors of one of the two papers his proof rested on were the first to admit that.fontographer2000.gif

The autism and scientific world failed to fall adoringly at Dr King’s feet, possibly because either:

a) There is a vast conspiracy from the Illuminati lizard-people hiding ‘the truth’ or;
b) He’s wrong. Again.

The media world failed to fall breathlessly on Dr King’s ‘scoop’, possibly because either:

a) There is a second vast conspiracy from the press wing of the Illuminati lizard-people hiding ‘the truth’ or;
b) He’s wrong. Again.

In the meantime, parents carry on getting scammed by this latest ‘test’ for autism related mercury poisoning. If we want evidence of the sheer silliness of the whole damn thing we need only turn to the words of those that use it. The following post was forwarded to me from a member of the Autism Biomedical Europe Yahoo Group:

I’m confused by my son’s porphyrin levels and could do with help. Ran the French porphyrin tests in July 06, Feb 07 and July 07. Precoporphyrin was 30 a year ago = mecury toxic. This dropped to 18 in Feb as we chelated. We’re still chleating, but his last test showed the level was back up to 29.

His Copro levels (mercury and lead) have also gone nuts.
290 in July 06
330 in Feb 07
440 in July 07

We know that the chelators are working (urinary toxic metals show good pulls), so why are the porphyrin levels not dropping?

We live in a nice rural area with no major industry and no major source of toxic metals, so I doubt he’s picking up metals from the environment.

Weird huh? What possible explanation could there be for mercury and lead levels to not go down??? As far as I can tell, there are four:

a) Chelation doesn’t work
b) This child was never mercury poisoned
c) The Porphyrin test doesn’t work
d) Something else?

What do you think? What other explanations could there be?

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