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The Somali Minnesotan Autism Epidemic

13 Apr

One of the most intriguing scenarios to pop up from the so-called autism epidemic happened in Minnesota in the US. It was noted that there were what seemed to be disproportionately high numbers of second generation Somali children in Minnesotan schoolrooms. Of course, this was immediately latched on to by the usual suspects, despite the caution issues by health authorities that until proper epidemiological studies had been done it would be impossible to say whether this really was a cluster worth investigation or just a coincidence.

On the 31st March, the Minnesota Dept Health released the study. Its a fairly substantial read. One thing immediately struck me about this:

Administrative prevalence of Somali children, ages 3 and 4, who participated in the MPS ECSE ASD programs was significantly higher than for children of other races or ethnic backgrounds

OK so this is what the families were saying. But there’s an extreme note of caution that should be noted here. This is basically CDDS all over again. Just like some believed that an increasing number of reports to CDDS meant that there was an autism epidemic and just as CDDS said there reports really shouldn’t be used to study these things, MDH are also saying:

Because of the study’s limitations, it is not proof that more Somali children have autism than other children…

This is a vital point. Back in 2005, James Laidler made the clear point that Department of Education data on autism are not reliable for tracking autism prevalence.

Sadly, the new Age of Autism editor, Abdulkadir Khalif, either misunderstood or elected to ignore this issue when he said:

It was obvious from the numbers that the issue of prevalence has finally been settled, and that there definitely is a cluster of autism in Minneapolis

It is clear from the report that Khalif has grossly overstated the case. Firstly, the issue of prevalence is far from settled. MDH seem to be solely using educational data which, as pointed out by Laidler, is not reliable for tracking autism prevalence. Indeed the phrase ‘administrative prevalence’ used by MDH reflects this. ‘Administrative prevalence’ refers solely to numbers of kids in educational programs. This is a clear distinction from ‘prevalence’ which is the proportion of individuals in a population who suffer from a defined disorder. Using only educational data gives a distorted picture.

As has been shown, the USDE data on autism are at odds with studies of autism prevalence, largely because the criteria used by the school districts (the source of the USDE data) to categorize children as autistic are neither rigorous nor consistent. They are inconsistent over time, as are the medical criteria, and are inconsistent from region to region. The USDE data are not reliable for tracking the prevalence of autism, and they in fact never were meant to fill this need.

Secondly Khalif uses the word ‘cluster’ whereas the MDH report does not use it at all. And it is not a word that should be used in such a throwaway fashion – it has a distinct epidemiological meaning.

So clearly, contrary to Khalif’s assertion that the issue of prevalence has been settled, it has not. Contrary to his statement that there is a cluster, there has been no such epidemiological assessment or statement.

Here are some more quotes from the MNH report that Abdulkadir Khalif either chose to ignore or never actually read:

The fact that a child is participating in an ASD early childhood program is an indicator of educational need, but that child may or may not have a medically diagnosed ASD.

Further, Minnesota’s public school open enrollment policy allows children to attend special education programs in school districts where they are not residents. This raised the question of whether participation rates for Somali children might appear higher than the participation rates for non-Somali children because of an influx of Somali children who are not residents of the Minneapolis school district attending MPS ECSE programs for ASD.

Data on variability of ASD prevalence by race, ethnicity, and SES is limited and inconclusive, and apparent differences between racial and ethnic populations may largely be due to differences in case finding and service provision.

Across all assumptions and ASD program types, administrative ASD prevalence estimates for Somali children were uniformly higher than the U.S. parental reported ASD prevalence, but most of the 95% confidence intervals corresponding to the administrative prevalence estimates for Somali children contained the value of the U.S. parental reported ASD prevalence estimate – suggesting that the 2005-2006 administrative ASD prevalence for Somali children might be no different from what would be expected in the U.S. population of children ages 3 and 4 based on parental report.

So what does this mean?

It means that there are no firm answers and that Khalif is simply wrong to assert that there are.

Its always been one of the great puzzles to me that a section of (mostly) parents who demand accurate answers fast cannot seem to understand that there _are_ no accurate answers until the science – proper science – has been done. And that takes time. What legacy do these parents want to leave the autism community? Fast inaccurate mistakes? Or well planned and rigorous science that helps build the growing knowledge we already have?

Omnibus Expert: Patricia Rodier

10 Apr

Autism just plain isn’t mercury poisoning. When can we move on?

Even some of the people who loudly promoted the mistaken idea that “autism is just a misdiagnosis for mercury poisoning” have backed off. But, the groups that promote autism as vaccine injury are packrats: once they’ve collected an idea, bad or not, they won’t ever let it completely go.

Some of you will be thinking, dang, another mercury post. I agree, there are a lot of good arguments against blogging about the mercury-autism connection any more. For one, it gives the idea press that it just doesn’t deserve.

I do think this is worth posting about, though. “This” is the expert report from Dr. Patricia Rodier, submitted to the Autism Omnibus Proceeding. In a single document, we now have an expert on both mercury toxicology and autism. Not faux experts, or worse, businesspeople and public relations people, but an actual, bone fide expert in both fields. I.e. we have a good document to give to people who are being snowed under by the misinformation campaign promoting autism as mercury poisoning.

When Patricia Rodier testified in the Autism Omnibus Proceeding, I was very impressed–and I blogged it right away. I remember at the time telling a friend that it was good to finally see someone officially debunking things like Sally Bernard et al.’s paper, Autism: a novel form of mercury poisoning. My friend pointed out that any college freshman in science (and most not in science) should be able to tear that “paper” apart.

Unfortunately, “should be able to tear the paper apart” isn’t enough. Many people don’t have the time and/or energy. So, many people still think that paper is valid. Let’s face it, that “paper” should have been retracted by the authors long ago, but they still soldier on with the “autism is mercury poisoning” message.

Dr. Rodier’s qualifications are quite good. Her summary is quite good:

As a research scientist who has studied both the toxic effects of methylmercury in animals and autism in children and animal models, I believe I am qualified to evaluate the scientific merit of the allegation.

She may be the only person in the world who has studied both mercury toxicity and autism.

What does she think? In a nutshell:

My conclusion is that the allegation has no scientific support and is highly improbable

Dr. Rodier notes that the comparison that autism and mercury poisoning appear similar isn’t even close.

In othcr words, because the symptoms of methylmercury poisoning
are not similar to those of autism, the authors have tried to construct a new, hypothetical kind of mercury poisoning from symptoms of toxicity of other mercury species and symptoms never reported for any kind of mercury exposure. The hypothesis is not based of facts; instead, the facts are being selected, manipulated, and shaped to fit the hypothesis. The hypothesis is then offered as evidence. But hypotheses are not evidence.

Ouch. Ouch, that is, if you are someone promoting autism-as-mercury-posinong.

Dr. Rodier can back up her words, as we discussed in the previous blog post. But, let’s say that again, Dr. Rodier uses research based facts, not manipulated hypotheses, to come to her conclusion.

I need to get a clean copy of that document, one that looks as good as the information it contains. That document needs to get into the hands of people being lured by the pseudo scientists promoting autism as mercury poisoning.

Thank you, Dr. Rodier for putting yourself on the line to testify. Thanks also to the HHS for allowing these reports to be made public.

The vaccine debate has a real cost

31 Mar

Of course, this isn’t news. But usually the cost is characterized in the danger to public health.

What about the cost to people with autism? Here’s a blog post from the Simons Foundation. (as an aside–there is a real autism organization). They are quoting Cathy Lord and Paul Shattuck.

Given the diversity of the panel’s members, the strategic plan was, unsurprisingly enough, hotly debated, and continues to be scrutinized.

Most of the debate centers around the plan’s emphasis on environmental risk factors. Lord says this came at the cost of research on more worthwhile topics, such as how to expand treatment services to low-income families — a project for which she was hoping to be funded.

“It’s gone, just gone. I was pretty astonished to see that that had disappeared,” she says.

The report also doesn’t emphasize studying autism’s course beyond childhood, notes Shattuck. “The amount of money that goes into understanding services and aging and supporting people in their daily lives seems disproportionately small,” he says.

One of the problems with the vaccines-cause-autism groups is that they really don’t advocate for people with autism. They have abandoned entirely people of low income and minorities (except where they can be used for political gain).

It isn’t just that groups like SafeMinds, Generation Rescue and the rest can’t be bothered to spend the time worrying about minorities or adults. It’s the fact that the data those groups use to support the “epidemic” makes ZERO sense when you consider minorities.

Consider this: the “rate” of autism is 0.3 per 1,000 for Hispanics in Wisconsin, but 10.6 for Whites in New Jersey.

Why isn’t Generation Rescue calling for an investigating the Hispanics of Wisconsin? Shouldn’t they want to know what is “protecting” that subgroup from autism?

They don’t care, they don’t want to bring attention to the Hispanics in Wisconsin (or the under represented minorities across the nation), because it blows a big hole in the “epidemic”. Obviously we still aren’t counting all the people with autism in our prevalence estimates. How can we rely on the historical data that shows an “epidemic” if we aren’t doing a good job even now?

We’ve covered this many times in the past. It is one thing when the damage caused is more abstract. But when it become very real, when minorities are being left out in the cold, it is an outrage.

Hours and hours were spent in the IACC meetings wordsmithing the vaccine language. To groups like SafeMinds and people like Lyn Redwood, the Strategic Plan was a political document. It was a statement by the government, and it was critical to get as much “admission” of autism being caused by vaccines as was possible. So what if another generation of minorities gets mislabeled with Intellectual Disability or some other Special Education category when SafeMinds was able to get the IACC to admit that many parents think vaccines cause autism?

This is what happens when psuedo “Vaccine-injury” advocates pretend to be Autism advocates and take seats at the table. Lyn Redwood put her own interests and those of her organizations ahead of the well being of people with autism.

That’s just plain wrong.

Is there an autism epidemic – the latest science

25 Mar

A new paper from Eric Fombonne is in electronic print at the journal Pediatric Research. It will apparently be published in the paper version of the journal some time after April.

The title is ‘Epidemiology of pervasive developmental disorders’ and as the name suggests, Fombonne looks at all the available quality epidemiology he can find relating to PDD’s.

This article reviews the results of 43 studies published since 1966 that provided estimates for the prevalence of Pervasive Developmental Disorders, including Autistic Disorder, Asperger Disorder, Pervasive Developmental Disorder Not Otherwise Specified, and Childhood Disintegrative Disorder.

Combining all these categories together Fombonne presents a prevalence of 60-70/10,000.

For autistic disorder, Fombonne says:

The correlation between prevalence and year of publication was statistically significant and studies with prevalence
over 7/10,000 were all published since 1987. These findings point towards an increase in prevalence estimates in the last 15-20 years.

For PDD-NOS, Fombonne explains that it is next to impossible to get accurate prevalence rates as:

This group has been much less studied in previous epidemiological studies…

Again, for Aspergers, Fombonne says that AS specific epidemiological studies are sparse but, in something of a surprise:

By contrast, other recent autism surveys have consistently identified smaller numbers of children with AS than those with autism within the same survey. In 9 out of 10 such surveys, the ratio of autism to AS prevalence in each survey was above unity, suggesting that the prevalence of AS was consistently lower than that for autism. How much lower is difficult to establish from existing data, but a ratio of 3 or 4 to 1 would appear an acceptable, albeit conservative, conclusion based on this limited available evidence. This translates into a prevalence proportion for AS which would be ? to ¼ that of autism. We therefore used for subsequent calculations an estimate of 6/10,000 for AS, recognizing the strong limitations of available data on AS.

Lastly, for CDD:

Eight studies provided data on childhood disintegrative disorder (CDD). Prevalence estimates ranged from 0 to 9.2/100,000. The pooled estimate based on eight identified cases and a total surveyed population of 406,660 children, was 2.0/100,000. The upper-bound limit of the associated confidence interval (4.0/100,000) indicates that CDD is a very rare condition, with about 1 case to occur for every 103 cases of autistic disorder.

Fombonne then tackles the question everyone wants an answer to – is there an autism epidemic?

In order to answer this accurately, he explains that there has to be tight control over incidence estimates (the number of new cases occurring in a population over a period of time) and prevalence (the proportion of individuals in a population who suffer from a defined disorder). Failure to control these gives false results. Bearing this in mind, Fombonne goes through the five approaches taken so far to try and determine if theres an autism epidemic or not.

1) Referral Statistics.
Trends in time for referral statistics are not reliable. They fail to control for things such as referral patterns, availability of services, heightened public awareness, decreasing age at diagnosis and changes over time in diagnostic concepts and practices. An example of the issues from referral statistics is:

Strong evidence of “diagnostic switching” was produced in California and in all US states indicating that a relatively high proportion of children previously diagnosed as having mental retardation were now identified as having a PDD diagnosis. Decreased age at diagnosis has also been shown to contribute to the rising numbers of children diagnosed with PDD. In the UK, Jick and Kaye (62) have shown that the incidence of specific developmental disorders (including language disorders) decreased by about the same amount that the incidence of diagnoses of autism increased in boys born from 1990-1997. A more recent UK study has shown that up to 66% of adults previously diagnosed with developmental language disorders would meet diagnostic criteria for a broad definition of PDD.

2) Comparison of cross-sectional epidemiological surveys
If I’m understanding his point here (and please correct me if I’m not) Fombonne is saying that too many epidemiological studies are uniquely designed – not enough attempt to replicate a previous study – and hence:

The most convincing evidence that method factors could account for most of the variability in published prevalence estimates comes from a direct comparison of 8 recent surveys conducted in the UK and the USA. In each country, 4 surveys were conducted around the same year and with similar age groups. As there is no reason to expect huge between-area differences in prevalence, prevalence estimates should therefore be comparable within each country. However, there was a six-fold variation in prevalence for UK surveys, and a fourteen-fold variation in US figures. In each set of studies, high estimates derived from surveys where intensive population-based screening techniques were employed whereas lower prevalence proportions were obtained from studies relying on passive administrative methods for case finding. Since no passage of time was involved, the magnitude of these gradients in prevalence can only be attributed to differences in case identification methods across surveys.

3) Repeat surveys in defined geographical areas
So this is the opposite of the above – these are studies where they are being replicated as closely as is possible. However, the issue here is that there are simply not _enough_ of these studies to form a definite conclusion. However, it may be worth noting that in the two studies Fombonne highlighted as being carried out in exactly the same way in exactly the same place to exactly the same age cohort – but just at two different times one showed no increase in prevalence whilst the other showed no increase at 4 sites and an increase at 2 sites.

4) Successive birth cohorts
This means in very large surveys with a wide age range, if the proportion of people who have autism rises this _could_ be a rise in incidence and therefore a good hint that there is an epidemic. I say _could_ as other possible causes need to be ruled out first.

…two large French surveys [used this method]. The surveys included birth cohorts from 1972 to 1985…, and, pooling the data of both surveys, age-specific prevalence showed no upward trend.

A US survey _did_ show an upward trend but:

…the increase was not specific to autism. These analyses also showed a marked period effect that identified the early 1990s as the period where the prevalence estimates started to go up in all ages and birth cohorts, coinciding closely with the inclusion of PDDs in the federal Individual with Disabilities Educational Act (IDEA) funding and reporting mechanism in the US.

5) Incidence studies
The few incidence studies did show incidence trends rising over short periods of time. As noted in point 4) above, this _could_ be attributed to an autism epidemic. However –

…none of these studies investigations could determine the impact of changes over time in diagnostic criteria, improved awareness and service availability on the upward trend.

Contrary to what people who _want_ there to be an autism epidemic, these are non trivial reasons. It stands to reason that if (for example) Birmingham, UK – the countrys second city, goes from having zero service availability and no means of diagnosis in 1960 to having numerous types of service availability both publicly and privately funded and a _lot_ of means of diagnosis in 2000 there will be a _lot_ more autistic people in Birmingham. A hell of a lot. When we then consider that the diagnosis criteria has widened massively than we go from a hell of a lot more autistic people to a _whole hell_ of a lot. If we _also_ consider that people who used to carry one kind of diagnosis are now being swapped to autism then we go from a whole hell of a lot to a descriptive term beyond my ability. This isn’t even science – its basic common sense. The only issue is – ‘a whole hell of a lot’ is not a very accurate measurement.

Fombonne closes by saying that – based on the available data – we still cannot really say one way or the other if there has been an autism epidemic. Remember when you read the quote below that its _incidence_ that gives us an epidemic.

Current evidence does not strongly support the hypothesis of a secular increase in the incidence of autism but power to
detect time trends is seriously limited in existing datasets. Whilst it is clear that prevalence estimates have gone up over time, this increase most likely represents changes in the concepts, definitions, service availability and awareness of autistic-spectrum disorders in both the lay and professional public. To assess whether or not the incidence has increased, method factors that account for an important proportion of the variability in prevalence must be tightly controlled. The possibility that a true change in the underlying incidence has contributed to higher prevalence figures remains, however, to be adequately tested.

Poling turns his back on genetics

13 Mar

It’s been a year since the concession in the Hannah Poling case was made public. I’ve been thinking that we would likely see some discussion on it again–especially since the Bailey Banks case didn’t turn into the media event that the autism-is-caused-by-vaccines groups would have liked.

OK, I’m not that good at predicting events, but I was thinking after a year it is time to write a couple of posts about some issues from the Hannah Poling case for a couple of weeks. So, I wasn’t totally surprised when Dr. Jon Poling came out with an op-ed piece in the Atlanta Journal Constitution, “Blinders won’t reduce autism”.

When I read this last night, I thought “why blog this?” But, one line in there bugged me–it’s a common misconception but one that a doctor, heck a neurologist, should never make: the idea that genetic conditions aren’t treatable.

Here’s the quote:

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention

Wow. I guess we should tell Dr. Randi Hagerman at the UC Davis MIND Institute and everyone else working on fragile-X (a genetic condition that is on the verge of demonstrating valuable interventions) to stop their work?

And, why is it that people who claim to support “gene-environment” interactions seem to have disdain for the “gene” part? How are we supposed to separate the various autism subgroups without identifying the genes? And, if we identify genes, won’t their function give us some idea of what environmental causes might be worth studying?

OK… I’ve got that out of my system….

As long as we are here, we might as well look at some other fallacies. A good place to start is the Autism Street blog, who covered the poling op-ed. It’s well worth the read, as he covers some things I won’t.

One thing we do both cover–this statement by Dr. Poling:

Public school systems are drowning in the red ink of educating increasing numbers of special-needs students.

Autism Street has a nice graph (again, I encourage you to take a look), but here I’ll just point out that this assertion by Dr. Poling about the increasing numbers of special education students is just plain false. The percentage of the student population in Special Education has remained remarkably constant over the past 10 years or so. The cost of some of the autism therapies (ABA in particular) has likely driven costs up, but that isn’t what Dr. Poling said.

The main reason I was going to avoid discussing Dr. Poling’s Op-Ed is the fact that is is rather poorly disguised attempt to air his ongoing battle with Dr. Paul Offit.

Dr. Poling writes discusses how Dr. Andrew Zimmerman is a hero to the cause because of a recent book he edited. He then makes Dr. Offit the villain for Autism’s False Prophets:

On the other hand, Dr. Paul Offit, the vaccine inventor whose Rotateq royalty interests recently sold for a reported $182 million, has written a novel of perceived good and evil called “Autism’s False Prophets.”

Frankly, I think Dr. Poling should have listened to that little voice in his head (which I hope was there) saying, “Don’t take the cheap shots”. By which, I think that describing Dr. Offit’s book as a novel was rather silly and just points out that this is a personal attack by Dr. Poling. It doesn’t add, it just detracts.

If you think calling that a personal attack is a stretch, here’s a bit of telling imagery:

In the story, Offit takes no prisoners, smearing characters in the vaccine-autism controversy as effortlessly as a rich cream cheese.

Actually, I thought that Dr. Offit gave people like Andrew Wakefield a lot of respect, considering the low quality of their research and their public actions.

I was struck by the “cream cheese” allusion. Anyone recall this?

Paul Offit is the Philadelphia cream cheese of the autism debate — he smears so effortlessly

–Dan Olmsted, September 13, 2008

It stuck in my mind because it was so bad. Seriously, I had some people outside of the autism world read that bit by Dan Olmsted and asked them what they thought Dan Olmsted was trying to say. The readers didn’t come away with Mr. Olmsted’s message (that Dr. Offit smears others easily). Instead, they came away thinking Dan Olmsted was saying that it was easy to smear Paul Offit! S

My guess is that Mr. Olmsted wasn’t writing for anyone other than the Age of Autism regulars who would overlook his clumsy writing for a chance to poke fun at Dr. Offit, so he probably isn’t bothered.

I guess Dr. Poling thought it was a good analogy.

But, back to my own clumsy writing. Dr, Poling makes this statement:

As both parent and doctor, I cannot fathom turning my back on a child nor science, in order to avoid inconvenient questions about vaccine safety or any other reasonable environmental factor.

For my part, I wonder how a neurologist can turn his back on considering genetic conditions worthy of intervention. I wonder how a scientist who supports the idea of gene-environment interactions can turn his back on genetics.

Dr. Poling closes with this statement:

In the end, logic and reason will prevail over politics and profits.

God, I hope so. Unfortunately, Dr. Poling seems to have allied himself with groups who have abandoned logic. Generation Rescue and David Kirby come readily to mind.

Another misinterpreted study. This time they are misusing Israel data

22 Feb

Kent Heckenlively from the Age of Autism blog has recent post up on a study out of Israel on autism. In it, he notes that the “incidence” of autism in Israel actually dropped for a few years

What’s curious, though, is how this population of medical professionals who were supposedly good at identifying and diagnosing autism in 1999, then had a drop of more than 40% by 2002. Did they lose their newly-acquired skills in a sophomore slump? If I’m not mistaken, those were also the years of the vaccine-autism “panic” which began shortly after the publication of Dr. Andrew Wakefield’s article in the Lancet, linking the MMR shot and autism. Was there a drop in vaccination rates in Israel after the Wakefield publication? Did vaccination rates then subsequently go up in later years?

Here’s the figure.

Figure 1 from Israel Autism Paper

Figure 1 from Israel Autism Paper

Let’s do this quickly. The interpretation is nonsense. Start from the fact that Google Ph.D.’s seem to rarely check simple facts using google.

Enter “Israel Vaccine Schedule” into google. The top link is a WHO site.

Take a look at how the MCV (Measles Containing Vaccine) coverage has varied with time.

MCV uptake was increasing steadily up until 2003, when it dropped for two years.

Year MCV Uptake Measles cases
1998 97% 8 (Year of Wakefield paper)
1999 97% 14
2000 97% 36 (year “incidence” starts to drop in Israel
2001 96% 19
2002 98% 2
2003 95% 124
2004 84% 116 (year MCV uptake drops)
2005 96% 2
2006 96% 9
2007 96% 539 (measles spike)

Obviously the drop in autism “incidence” in Israel isn’t related to measles vaccines–the drop in uptake happened after the drop in autism “incidence”. Note that I put “incidence” in quotes. The paper isn’t measuring incidence. I’ll get to that later.

In 2007, something else happened. Measles cases spiked. Yep, 3 years after vaccination rates dropped, there’s a big spike in measles. Are they connected? Possibly. I would want to see information like how many of the 539 measles cases were children 4-5 years old, for example.

Other issues with the paper.

1) they don’t give “incidence” or “prevalence”, really. They are giving the number of people who are getting services for autism. Sorta like the California DDS data. Why is this important? We don’t know how easy it is to qualify for services. We also don’t know how hard they are looking for people with autism. It isn’t the same thing as a measure of all the people with autism.

2) Note that 97.5% of the people with autism are Jewish. About 25% of the population in Israel is non Jewish (if Wikipedia is accurate). So, is being Jewish a “risk factor”, or is there an issue with access to services.

3) According to Mr. Heckenlively, the prevalence of Autism in Israel is 1 in 2,400. I guess low prevalence numbers invalidate studies when they are in Denmark, but not when they are in Israel?

By the way, consider that low “incidence” value for Israel. Now look at their vaccine schedule (I am only listing those for very young children)

DTaPHibIPV: 2,4,6,12 months
HepA: 18, 24 months
HepB: Birth, 1, 6 months
MMR: 1 year, 6 years

Hmmm. Remember how Israel has a low autism “incidence”?

Look at that first big combo vaccine–5 vaccines at once. I guess combo vaccines don’t cause autism, eh?

HepB is given at birth. I guess that isn’t a risk factor either, eh?

Separating out the combo vaccines, I count 28 different vaccines given by 24 months in that vaccine schedule. So much for “too much, too soon”, eh?

Of course, this is stretching the Israel data waaaay too far. Of course we can’t say that the Israel data prove that HepB, combo vaccines and too-many-too-soon are not risk factors. Just like we can’t use these data to support Dr. Wakefield’s hypotheses.

I’m glad to see autism studies come out of new countries. Let’s not use data with big limitations to support our preconceived ideas, shall we?

(note, I made corrections shortly after publishing. These did not change the content substantially. I did change the title to clarify that it is not the Israeli researchers who are misinterpreting the data)

Bad Spin, bad interpretations, bad for the community

20 Feb

I was hoping to move on from the Omnibus decisions. Let’s face it, it’s hard on that fraction of our community that believes in vaccine causation. Also. let’s face it, the decision is so clear and decisive that it is hard to add anything to it or complain about any parts.

But then Barbara Fisher Fischkin chimed in. Her spin is just plain amazing. The comments she makes are exactly (and I do mean exactly) the sort of thing bloggers like David Kirby would tear apart if he were even close to impartial.

You know from the fist sentence that her piece, “Bad Justice, Bad Journalism, A Maligned Doctor And A Dead Mother” is going to be bad:

As an Autism Mom, I spent last week with my head spinning.

You left out some important descriptive words, Ms. Fisher. “As an Autism Mom who believes in vaccine causation…”

Just because you are an autism mom doesn’t mean your head is spinning. I know lots of autism moms whose heads aren’t spinning. In fact, I’ve been watching my local yahoo groups and, guess what, people aren’t talking about the Omnibus decisions.

In America last week, our Vaccine Court very curiously threw a hearty dose of cold water over the widely reported connection between autism and vaccines.

Very curiously? Nice way to diminish what they did. They very carefully and thoroughly splashed an entire swimming pool of cold water on the widely reported belief that there is a connection between autism and vaccines.

She then spends some time on the fact that it is “widely reported”. Sorry, just because you can pull people like David Kirby, Dan Olmsted and that journalism student Ashley Reynolds to tell your story doesn’t make the story true.

I also appreciate the vague nature of “reported”. Reported where? Local newspapers in Hawaii that will accept just about anything and get it on to the news wire? How about reported in the medical literature?

There’s more cold water that can be thrown, but let’s move on.

Now, here’s the comment that got me to blog this:

The Vaccine Court’s decision, like so many complicated matters can be obscured by too much information and, alternately, clarified with a dose of simplicity. So here goes: This year the Vaccine Court, in looking at three specific cases, ruled that, in effect, vaccines and/or their ancillary, toxic ingredients do not cause autism. But last year – with evidence produced by a neurologist father and a mother who is a nurse and an attorney – the court ruled that, in effect vaccines could cause autism. Thousands more cases are pending which it why I believe this matter is far from settled. Ask any bookie: Second guessing an outcome with as many variables as this one is risky business.

After the Hannah Poling story broke, David Kirby and I used to take turns pointing out the misstatements made about the court. Mr. Kirby made a LOT of misstatements. And now, here we have a big one from Ms. Fisher. Care to blog it Mr. Kirby? I know you see it.

The court did not rule on the Hannah Poling case. HHS conceded the case. BIG difference. The Court did not consider the evidence, the court did not make a decision based on the evidence, nothing like what Ms. Fisher is presenting.

Mr. Kirby, if Paul Offit said that, you’d already have a scathing blog post up.

Also, she is misrepresenting the whole point of the Omnibus. “Thousands more cases are pending….”.

Does she have no idea of what is going on with the Omnibus? Here’s a definition of “Omnibus”

pertaining to, including, or dealing with numerous objects or items at once

The whole point of using an Omnibus Proceeding and test cases was so that a few cases could be heard with very detailed evidence and general causation could be applied to the thousands of other cases waiting.

Or, to put it another way, any of the thousands of other cases waiting which are contending MMR caused autism are basically over.

And, guess what, the Petitioner’s lawyers only presented two “theories of causation”. It isn’t like there are that many “variables” as she would like to assert. Each of the thousands of cases is not an individual variable.

Ms. Fisher then moves into the Wakefield/Brian Deer story with

As this was happening in the United States, in England a journalist reported that a certain gastroenterologist who treats children with autism – and whose license over there is under intense judicial scrutiny — fabricated his data. There are, not surprisingly, counter allegations that the journalist strategically created some of the controversy himself so that his story would get more play. This does not surprise me.

It doesn’t surprise me either. Instead, it saddens me that a fraction of my community has acted so harshly towards Mr. Deer in what appears to this reader be an attempt at a smokescreen–an attempt to divert attention away from the possibly very damaging findings Mr. Deer has uncovered about Dr. Wakefield’s work.

Notice that Ms. Fisher avoids entirely the crux of the entire story by Mr. Deer: if the information Mr. Deer has presented is true, is there anything left of Dr. Wakefield’s study to support his idea that MMR causes autism?

Take away even the question of whether Dr. Wakefield knew or should have known the details Mr. Deer presented. If those details are true, even the very weak evidence that Dr. Wakefield presented on MMR causing autism is worthless.

The spin will continue. I believe strongly that fewer and fewer real journalists are going to listen and report it.

[note, I modified this post slightly shortly after publishing it. Substance was not changed]

Parental age is a 'risk factor' for autism

15 Dec

A story today talks about how parental age _may_ be a ‘risk factor’ (loaded phrase much?) for autism. According to the studies lead author (Dr. Maureen Durkin of the University of Wisconsin School of Medicine and Public Health):

What we found was that actually it’s both parents age, and when you control for one parent’s age you still see the effect of the other parent’s age, and vice versa,

….

After the researchers accounted for factors that might influence the results, they found that children born to mothers aged 35 and older were 30 percent more likely than those whose mothers were 25 to 29 years old to have been diagnosed with autism. Having a father who was 40 or older boosted risk by 40 percent.

The study didn’t really look at why this might be but they did do a bit of educated blueskying:

Older parents have had a longer time to sustain genetic damage to their sperm or egg cells, as well as to store up environmental contaminants in their bodies.

They are also more likely to have used assisted reproduction technologies, which have been tied to poor pregnancy outcomes. And there could be something about the behavioral traits or psychological makeup of people who wait to have children that boosts autism risk in their offspring.

Which is all a fancy way of saying: I got nuthin’ so here’s an answer that covers everything. Which is fair enough, it falls totally outside the remit of the paper to answer those questions.

So now you can expect a whole bunch of people to cast aspersions on this study, relating how really they were only 19 when they had an autistic kid and that its all a big conspiracy to detract from the evil vaccines. Whatever.

Its quite an interesting study, the most recent of many that look at (and find a connection) between parental age and autism. Does it move us forward in terms of causation? Nope. Does that really matter? Nope. Its still nice though to see science being done that is just that most important of work – the hog work that starts to fill in the blanks of the most basic facts surrounding an issue. Thanks to this study and those preceding it I think its fair to say now that raised parental age is a factor in autism causation. Not always but sometimes.

Another interesting bit of blueskying:

The findings could also help explain why autism appears to be on the rise in the United States, the researchers added, since the percentage of children who are born to mothers 35 and older and fathers 40 and older has risen steadily since 1980.

I think this is a very interesting hypothesis to follow up on and I hope someone does. But first of all of course we need to establish _if_ autism is ‘on the rise’. Many people will tell you there’s an epidemic of autism but there is in fact no valid evidence to support this supposition. I hope some evidence can be forthcoming. We need it.

David Kirby on mitochondral autism

1 Dec

Over the last few months David Kirby has been talking about a new paper that would be forthcoming that would postulate a link between autism and vaccines via Mitochondrial disease. He claimed to have some inside knowledge of this due to interviewing one of the co-authors.

That co-author was Richard Kelley and that paper has indeed been published prompting another excited flurry of posts from David on the Huffington Post. I know it was Richard Kelley as I’ve also been conversing with Dr Kelley via email. Following David’s initial post on the subject several months ago, amongst many other things Dr Kelley expressed:

…furor and frustration that we all feel right now is due to the very poor way in which this has been handled by several people each trying to claim an undeserved 15 minutes of fame.

It was easy to tell that here was a man who was immensely angry but was determined not to discuss any results – possible or actual – until they had gone through the rigour of peer review.

A day or so ago David published a post about this new study but I have to say that in my lowly opinion it left quite a lot unsaid and inflated the significance of what it did say.

David made much of key sentences of this paper (Cherry picking) and really the overall importance of it was a bit sidelined. For example, David says:

[This paper tackles]..The widespread misconception that Hannah’s case was “unique,” and without any bearing on other autism cases…

Whereas, the actual paper states:

Recently, there has been increased concern regarding a possible causative role of vaccinations in autistic children with an underlying mitochondrial cytopathy. For one of our 25 patients, the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.

That one patient was, of course, Hannah Poling. Now, if there was ever ‘widespread misconception’ that mitochondrial autism was real (which I don’t believe there was) then this paper certainly adds weight to the argument that it exists. However, if David is trying to claim that this paper indicates that autism caused by vaccine fuelled mitochondrial disease is not unique to Hannah Poling then I think he has misunderstood or misread it. One out of twenty-five is pretty much the definition of uniqueness.

David then goes on to claim that this study gives weight to the claim that regressive autism is real. As it happens I agree with that. However, it should be placed in its proper context. David states:

Nearly all of the children in my book regressed into autism – a process that often began almost immediately after receiving multiple vaccinations.

Perhaps that is why the very idea of regressive autism has been cause for derision among many scientists, who insist that the parents were simply too ignorant to “notice” autism symptoms in their children earlier on.

That is, with due respect to David, simplistic and not representative of either data, or testimony. During the Autism Omnibus hearings, Professor Sander Greenland gave testimony (for the petitioners it should be noted) that clearly demonstrated that such scientists as Eric Fombonne clearly accept that regression exists and can possibly account for 28% of autism cases. Thats not exactly science being derisive of parents ideas about regression. However, it must be evaluated on a scientific case-by-case basis. As also testified to during the Autism Omnibus proceedings, parents who thought their child (Michelle Cedillo) had regressed were clearly shown to be in error when video evidence demonstrated obvious indicators of autism prior to vaccination.

However, David suggests that ‘nearly all’ the children in his book were regressive following vaccination. As Greenland showed during testimony. At most, this group of ‘clearly regressive autistics’ (autistic people who allegedly regressed following vaccines) could – at most – account for 6% of all ASD cases. If we take the numbers down to the sort of ‘low functioning only’ cases that I have heard many autism/vaccine believers in then we are down to 2% of all autism cases. This translates to approx 11,200 0 – 21 year olds in America. How this number constitutes an autism epidemic I have no idea.

David goes on:

Most of the children in my book – and Hannah Poling as well – had rather severe physical, biomedical problems associated with their regression. Again, this claim has been met with scorn by many in the medical and science communities, who say that autism is much more of a behavioral/neurological than biomedical condition. Parents and doctors who do try to treat these physical symptoms – with conventional and alternative therapies alike – are singled out for particular damnation by many of these so-called experts.

Firstly, I very much doubt that any parent who is treating a childs illness with conventional therapy has been scorned by anyone. There is however, no epidemiology that associates autism per se with the mainly toxicological and/or gastric issues most biomed parents talk about. The paper states:

Twenty-one patients (84%) had histories of major non-neurological medical problems, most commonly of the gastrointestinal system, with gastroesophageal reflux affecting nine and constipation affecting eight subjects.

The other ‘major non-neurological’ were things already associated with autism or other developmental disorders such as Prader Wili.

Lets also note that none of the symptoms listed by David would be treatable by chelation for example.

This study found 64% had GI dysfunction. This is very high and warrants further study, no doubt about that but…what relation has this to vaccines?

The claim that vaccines cause GI dysfunction revolves around the MMR hypothesis – a hypothesis that has taken an absolute battering of late. It has been established in clinical science that the findings of Wakefield et al cannot be replicated and the original findings that indicated a link were based on corrupt data. Of all the various vaccine hypotheses this is by _far_ the weakest.

There is also the fact that the GI Symptoms listed in the study are common amongst a whole range of Mitochondrial diseases and thus its hard to see what particular significance they have to mitochondrial autism.

David goes on:

VACCINES MAY PLAY A ROLE IN AUTISTIC REGRESSION IN SOME CHILDREN WITH MITOCHONDRIAL DYSFUNCTION

“Recently, there has been increased concern regarding a possible causative role of vaccinations in autistic children with an underlying mitochondrial cytopathy (cellular disorder),” the authors wrote. “For one of our 25 patients [Hannah, who DOES have autism, contrary to claims by Gerberding, Offit et al, who erroneously insisted, without ever meeting the child, that she only had “features” of autism], the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.”

Maybe not – but one must wonder, then, why medical personnel at HHS’s Vaccine Injury Compensation Program conceded that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine induced fever and immune stimulation that exceeded metabolic reserves.”

Inserts are David’s.

Lots of things to cover here. Firstly, David says “VACCINES MAY PLAY A ROLE” whereas the study authors say: “..the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.”

I think its pretty clear that the study authors are – at best – dubious that vaccines played a role. They are simply saying what the rest of us have always said: correlation does not equal causation.

David once again insists that HHS medical personnel “conceded that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine induced fever and immune stimulation that exceeded metabolic reserves.””

Where?

I asked twice in the comment thread that followed where this HHS document was and if we, the general public, could read for ourselves – and in context – these words. I am not suggesting David is lying at all. However, by his own admission David has been wrong more than once on what were previously firmly held opinions. This is nothing that should be being speculated about. We need to see this document.

Lastly, Gerberding, Offit et al were quite right to use the phrase ‘features of autism’. That is the phrase that both the HHS report and the case study (co-authored Jon Poling) used. Some say it is hair splitting but I don’t believe that saying someone has autism is the same as saying someone has features of autism. I’ve expounded on this before for those interested but suffice it to say I have a similar eye colour to Clive Owen. This doesn’t make me Clive Owen (much to my wife’s disappointment).

David goes on:

When I first reported this story, the researcher I spoke to told me there had been 30 children in the study, and two of them (8%) showed signs of brain injury from vaccines. Of the five children since excluded from the final published review, one must have been the second vaccine-related regression.

I very much think David might have been incorrect about that. I’m reasonably sure that Dr Kelley would not have referred to ‘brain injury from vaccines’. Given that the study he has just put his name to has cast doubt on that idea I don’t think its a valid idea.

There follows a series of what can only be called strawmen- this study didn’t do this, didn’t do that etc. For example:

….we now find out that nine of the children (36%) had so-called “multiple regressions,” and nothing in this review indicates that any attempt was made to determine if vaccines, febrile infections, or some other factors acted as triggers in the subsequent regressive episodes.

But in the sentence immediately before that David says:

Most of the children had regressed following illness-induced fever, the doctor told me.

The answer to the ‘question’ is right there. One regression, two regressions, twelve regressions – the Doctor states that regression followed illness-induced fever. In other words, given that these doctors know what caused the regressions why would it be necessary to look for something else? Something else that the authors have stated fairly clearly they don’t see any evidence for. However, as befits scientists discussing something both fairly new and of large public interest, they are careful:

Large, population-based studies will be needed to identify a possible relationship of vaccination with autistic regression in persons with mitochondrial cytopathies.

Thats fair enough I think. However I also think its going to be difficult. Sander Greenland made it very clear that detecting the hypothetical ‘clear;y regressive autism’ (i.e. autism caused by vaccines) was going to be next to impossible in large population-based studies, stating the the case amount was so small it would be pretty much undetectable by epidemiology. How to perform the kind of studies necessary to prove/disprove a relationship in such a small amount I have no idea. We’re basically trying to prove that vaccines trigger a mitochondrial cytopathy that leads to autism in – no matter what David thinks – is a pretty small group of people:

28% of people have a regressive form of autism. In 2003 at a LADDERS conference in Boston, Kelley postulated that 20% of regressive autism is due to mitochondrial cytopathies. CDC says that approx 560,000 of autistic people in the US are between 0 – 21. Therefore 28% of 560,000 = 156,800. 20% of 156,000 = 31,360. That’s about 5.6% of autistic children.

Rare? Not sure. Common? Hardly.

I Object! (Part 2)

19 Nov

It’s amazing that a relatively short letter could be so objectionable as to take multiple blog posts to discuss.

And, yet, here I am, on my third post. You can read the other two, I Object (Part 1) and Why should the Strategic Plan include vaccines.

Continuing on with bullet points (b) and (c)…

Bullet point (b), or “you are leaving money on the table”

[Letter](b) The plan fails to allocate commensurate resources. The CAA authorized $645 million for NIH research over five years. The plan falls short by close to $200 million. Given the urgent situation, we consider the CAA allocation to be a minimum requirement for federal agencies and feel that even greater resources are needed.

Who is going to say no to “we should apply more resources to the situation”? Certainly not I. But I’m not an MBA. I count resources in terms of how many good research groups are doing quality research in relevant areas. Counting the money, that comes second.

This is similar to the method used by the IACC. People tend to think–and this letter helps perpetuate–the idea that the CAA appropriated money and that the IACC worked from that budget to create the Plan.

Both ideas are incorrect.

First, in admittedly confusing language, the CAA authorized the appropriations. The CAA states, “…there is authorized to be appropriated..”, not, “this amount is appropriated”. Another way to look at it is to see how often “subject to the availability of appropriations” is used in the text of the CAA. It isn’t as though there is a bank account with $645M waiting to be tapped into.

Second, the IACC did not work from a budget and then decide on a Plan. They didn’t say, “Well, we’ve got $645 million, how will we spend it?” What they did was say, “what needs to get done?”. Near the end of the process, they passed the Plan on to the implementation subcommittee to draft the budgets for the various projects.

This sounds like the much more defensible method. The IACC can go to congress and say, “this is what we need to get the job done.” Had they come up with a budget higher than the CAA allocated, they would have been in a good position to ask for more. They are (I hope) in a good position to get their budget fully funded–they can defend why they came to the total cost in their budget.

That said, of course I’d like to see more research funded. But, I’d like to stay on a friendly partnership with the NIH too. Presenting their actions inaccurately (as this letter appears to do) doesn’t accomplish that in my mind.

let’s look at what the CAA authorized to be “appropriated“:

[Combating Autism Act]`SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.
(a) Developmental Disabilities Surveillance and Research Program- To carry out section 399AA, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $15,000,000.
`(2) For fiscal year 2008, $16,500,000.
`(3) For fiscal year 2009, $18,000,000.
`(4) For fiscal year 2010, $19,500,000.
`(5) For fiscal year 2011, $21,000,000.

`(b) Autism Education, Early Detection, and Intervention- To carry out section 399BB, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $32,000,000.
`(2) For fiscal year 2008, $37,000,000.
`(3) For fiscal year 2009, $42,000,000.
`(4) For fiscal year 2010, $47,000,000.
`(5) For fiscal year 2011, $52,000,000.

`(c) Interagency Autism Coordinating Committee; Certain Other Programs- To carry out section 399CC, 409C, and section 404H, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $100,000,000.
`(2) For fiscal year 2008, $114,500,000.
`(3) For fiscal year 2009, $129,000,000.
`(4) For fiscal year 2010, $143,500,000.
`(5) For fiscal year 2011, $158,000,000.’.

So, the $645 million number comes from section c. Two things to notice. First, there are large sums in sections (a) and (b) as well. I hope they are getting appropriated. Second, notice that there is money budgeted for 2007 and 2008 in that number. Remember that the CAA hasn’t been funded yet? Has NIH been sitting on their hands, waiting for the budget before they do autism research? Hardly.

The NIH budget for autism in 2007 is estimated at $127 million ($27M more than the CAA called for all IACC sponsored research, which includes CDC and other agencies). Similarly, $128M is the estimated budget for 2008 ($14M above the IACC budget).

Perhaps I am missing something. It is quite possible. But it appears to me that the NIH is working in good faith here.

Again, given the urgent need–to identify and serve the underserved in this country–I would consider there to be a great reason to increase resources applied by the IACC. I just don’t think that is want the signators of that letter had in mind. Consider the next point they make:

Bullet point c, More environmental research, or, what happened to the “V” word?

[Letter]Research on the environment, gene-environment interaction, and treatment are underrepresented in the draft plan. The plan should apply additional resources to these areas.

As already discussed, I found this statement interesting for what it doesn’t say, far more than what it says. What it doesn’t say explicitly is “mercury” or “vaccines”. As noted in that previous blog post: if the signatories of that letter are OK with this wording, it should be OK in the Strategic Plan.

Sullivan’s take

The order of these two bullet points sends a clear message: The Plan doesn’t use all the money “appropriated” and, yet, the Plan should put additional resources into environment and treatment.

Or, “why don’t you take some of the $200 million and spend it on these areas?”

It would be a good question if that was the way the process worked. (A) the money wasn’t appropriated (so there isn’t $200M sitting unused) and (b) the Plan was built on a “what needs to be done” basis, not “how much do we have to spend” basis. The push for more environment/treatment really needs to be justified in terms of “what needs to be done”.

But, again, I’d agree that more resources would be welcome. And, again, I would suggest attempting to meet the great need of serving the underserved. Research into services like the Taft Transition to Independent Living program comes to mind.

more to follow…

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