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Autism prevalence: Now estimated to be one in 68, and the antivaccine movement goes wild

There used to be a time when I dreaded Autism Awareness Month, which begins tomorrow. The reason was simple. Several years ago to perhaps as recently as three years ago, I could always count on a flurry of stories about autism towards the end of March and the beginning of April about autism. That in and of itself isn’t bad. Sometimes the stories were actually informative and useful. However, in variably there would be a flurry of truly aggravating stories in which the reporter, either through laziness, lack of ideas, or the desire to add some spice and controversy to his story, would cover the “vaccine angle.” Invariably, the reporter would either fall for the “false balance” fallacy, in which advocates of antivaccine pseudoscience like Barbara Loe Fisher, Jenny McCarthy, J. B. Handley, Dr. Jay Gordon, and others would be interviewed in the same story as though they expressed a viewpoint that was equally valid as that of real scientists like Paul Offit, representatives of the CDC, and the like. Even if the view that there is no good evidence that vaccines are associated with an increased risk of autism were forcefully expressed, the impression left behind would be that there was actually a scientific debate when there is not. Sometimes, antivaccine-sympathetic reporters would simply write antivaccine stories.

I could also count on the antivaccine movement to go out of its way to try to implicate vaccines as a cause of the “autism” epidemic, taking advantage of the increased media interest that exists every year around this time. Examples abound, such as five years ago when Generation Rescue issued its misinformation-laden “Fourteen Studies” website, to be followed by a propaganda tour by Jenny McCarthy and her then-boyfriend Jim Carrey visiting various media outlets to promote the antivaccine message.

Fortunately, over the last three or four years, the media have become noticeably—and appropriately—much more dismissive of antivaccine pseudoscience. This seems to have occurred in the wake of Andrew Wakefield’s humiliation at being struck off (i.e., had his medical license revoked) in the U.K. and then having his infamous 1998 case series that started the fear mongering over a nonexistent link between the MMR vaccine and autism retracted by The Lancet based on evidence that he committed scientific fraud.

The antivaccine movement aside, there remains a temptation among scientists and government agencies to release the results of new studies having anything to do with autism either during the last week of March or the first week of April, all, of course, to take advantage of the publicity of Autism Awareness Month. So it was last week, when beginning on Thursday I sensed a disturbance in the antivaccine crankosphere force, with the antivaccine blog Age of Autism rerunning various posts by Mark “Not A Doctor, Not A Scientist” Blaxill and other AoA denizens from 2009. The reasons were obvious. The CDC was going to release the latest autism prevalence data on Thursday. The antivaccine crankosphere has been busily spinning those numbers since Thursday, which means it’s time to address those numbers here.

Autism prevalence in the United States, 2014

The CDC’s latest autism prevalence numbers was published in the Centers for Disease Control and Prevention Morbidity and Mortality Weekly Report (MMWR) in a report entitled Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010. This is the sixth survey reported from data gathered from the Autism and Developmental Disabilities Monitoring (ADDM) Network. The ADDM is an active surveillance system in the US designed to provide estimates of the prevalence of autism and autism spectrum disorders (ASDs), as well as other characteristics, of children aged eight years whose parents live in eleven ADDM sites.

The goals of the ADDM are:

  1. To obtain as complete a count as possible of the number of children with ASD in multiple surveillance areas.
  2. To report comparable population-based ASD prevalence estimates from different sites every 2 years and to evaluate how these estimates are changing over time. To study whether autism is more common among some groups of children than among others.
  3. To provide descriptive data on the population of children with ASD.

The concept is simple; unfortunately the implementation is not. The report describes how surveillance is conducted at ADDM sites:

ADDM surveillance is conducted in two phases. The first phase consists of screening and abstracting comprehensive evaluations performed by professional providers in the community. Multiple data sources for these evaluations include general pediatric health clinics and specialized programs for children with developmental disabilities. In addition, most ADDM Network sites also review and abstract records of children receiving special education services in public schools. The second phase involves review of all abstracted evaluations by trained clinicians to determine ASD surveillance case status. A child meets the surveillance case definition for ASD if a comprehensive evaluation of that child completed by a qualified professional describes behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder–not otherwise specified (including atypical autism), or Asperger disorder. This report provides updated prevalence estimates for ASD from the 2010 surveillance year. In addition to prevalence estimates, characteristics of the population of children with ASD are described.

Why did the investigators choose age 8 as the benchmark, the age at which they would examine prevalence? As is explained later in the report, it’s because the baseline ASD prevalence study conducted by the CDC’s Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) in 2003 demonstrated that this is the age of peak prevalence. How can that be? The authors of that study speculated that it was possible at the time that the lower rates in 9- and 10-year olds might have reflected the use of narrower diagnostic criteria for autism before the DSM-IV and the increased availability of educational and health services for children with autism in the 1990s. More specifically, prevalence rates in that study between the ages of 5 and 8 didn’t significantly vary from each other; so the investigators chose the oldest age in that range, in order to capture the highest prevalence rate. To that, I also wonder whether, as I pointed out multiple times before, the observation that some children lose their ASD diagnosis as they grow and develop had anything to do with it. Be that as it may, this is the system, and that’s how the estimates come about.

Last time the CDC reported these numbers, which was in 2012, they found that autism prevalence was 1 in 88. The antivaccine movement went wild. This time, in 2014, the CDC estimates that 14.7 per 1,000 eight year olds (1 in 68) have a diagnosis of an ASD. As Autism-News-Beat points out, this new estimate is 30% higher than the estimate from 2012. (It should be noted that this prevalence number comes from 2010 data.) It’s hard not to mention at this point that it’s very hard to blame this increase on vaccines given the stability of vaccination rates overall in the US. Let’s just put it this way: The increase in prevalence numbers is not a compelling piece of evidence that vaccines are the cause of an “autism epidemic,” no matter how much antivaccinationists try to convince you otherwise.

So what could be going on?

Making sense of the numbers becomes easier if you start looking at more than just the overall number of 1 in 68, or even the estimate that 1 in 42 boys and one in 189 girls living in ADDM Network communities were identified as having ASD in 2010. After all, we’ve known for a long time that boys are considerably more likely to be diagnosed with an ASD than are girls, and these numbers confirm that. So let’s look at more of the details:

Non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children. Among the seven sites with sufficient data on intellectual ability, 31% of children with ASD were classified as having IQ scores in the range of intellectual disability (IQ ≤70), 23% in the borderline range (IQ = 71–85), and 46% in the average or above average range of intellectual ability (IQ >85). The proportion of children classified in the range of intellectual disability differed by race/ethnicity. Approximately 48% of non-Hispanic black children with ASD were classified in the range of intellectual disability compared with 38% of Hispanic children and 25% of non-Hispanic white children. The median age of earliest known ASD diagnosis was 53 months and did not differ significantly by sex or race/ethnicity.

Next, if you look at Table 2 in the CDC report, you’ll find a huge variation in the prevalence reported, ranging from 5.7 per 1,000 in Alabama (1 in 175) to 21.9 per 1,000 in New Jersey (1 in 46). Here are the data summarized in a graph:

ASDFig1

I noticed something about this graph immediately. Look at the colors of the data points. either dark or light. The dark-colored points represent sites that relied primarily on data from healthcare sources, while the light-colored points represent sources that had access to educational records throughout all or most of their surveillance area? Why is that important? Simple: Notice how all the sites that only relied on data from healthcare sources (Alabama, Wisconsin, Colorado, and Missouri) report prevalence rates below the prevalence rate for all the sites combined. Only one (Missouri) had error bars that encompassed the overall prevalence rate for the entire ADDM Network. Now notice that the sites that had access to educational records (Georgia, Arkansas, Arizona, Maryland, North Carolina, Utah, and New Jersey) all reported prevalence rates that were either at or above the overall prevalence for the network. To me this is a red flag that at least some of the variability in the autism prevalence numbers has to do with the intensity of surveillance and the intensity of screening in various states. Frequently, this is mischaracterized dismissively by antivaccinationists as a huge straw man they like to call “increased awareness,” but in reality it’s a lot more than that, as I’ll discuss later. In the meantime, let’s move on.

Another red flag indicating that much of what is driving the changes in autism prevalence numbers is likely to be something other than biology is the wide disparity between autism prevalence as diagnosed in non-Hispanic Caucasians and in African-Americans as apposed to the much lower prevalence as diagnosed in Hispanics. Indeed, non-Hispanic white children were approximately 30% more likely to be identified with ASD than non-Hispanic black children and were almost 50% more likely to be identified with ASD than Hispanic children. This sort of disparity is far more likely to be due to differences in screening and diagnoses than to biology. Now couple this with observations in the report regarding ASD diagnoses as related to diagnoses of intellectual disability. The authors noted that in previous reports, from 2002 to 2008, the greatest increases in ASD prevalence were noted in Hispanic children, non-Hispanic black children, and children without co-occurring intellectual disability. The first two suggest that Hispanic and non-Hispanic black children are likely to be “catching up” with Caucasian children in terms of access to diagnostic services, while the increases in children without intellectual disability is interpreted thusly:

The much higher prevalence of ASD without co-occurring intellectual disability among white children appears to explain much of the variation in ASD prevalence estimates between different racial/ethnic groups. Among white children, the prevalence of ASD without intellectual disability was nearly double the prevalence among either black children or Hispanic children (OR = 1.8, p<0.01 for both comparisons). Conversely, the prevalence of ASD with co-occurring intellectual disability was similar among white children and Hispanic children but significantly higher among black children than among both of these groups. This suggests that in these seven sites, the significant white-to-black and white-to-Hispanic prevalence ratios were primarily driven by higher prevalence of ASD without intellectual disability among white children, and the significant black-to-Hispanic prevalence ratio was primarily driven by higher prevalence of ASD with co-occurring intellectual disability among black children.

In other words, more children without intellectual disability are being diagnosed with ASD. In the past, these children likely would not have been diagnosed with ASD—or with anything at all. Now they are being diagnosed. As Emily Willingham put it:

From the data, it looks like a lot of sociocultural factors enter into the values. Given the huge variability from site to site and the ethnic differences, recognition and service availability are probably factors. Dr. Boyle referred repeatedly to the evolution of our understanding of autism and used the large percentage of children included in these values who have average to above-average intelligence as an example of that. Unlike numbers from a decade ago, these values include children who previously might not have been recognized as autistic.

And Rachel Dornhelm:

For one thing, the prevalence seems to vary in different communities and among children of different races. The CDC found white children are far more likely to be identified with autism, even though scientists don’t believe the rates are truly different between whites, Hispanics or blacks.

That means that the discrepancy lies in the diagnosis and services available in different communities.

This is very likely true. As was pointed out in the analysis posted at the Thinking Person’s Guide to Autism, Richard Grinker studied ASD prevalence rates in South Korea and estimated that 1 in 38 children had ASDs there. In a news report about the study, Grinker pointed out that the reason the rates he found were so high was likely because in-person evaluations were performed for any child suspected of having an ASD and two-thirds of the cases of ASD identified in the study were “in mainstream schools, unrecognized, untreated.” If the estimates in the South Korean study are more accurate, prevalence rates for ASDs, which are clearly still underdiagnosed, can be expected to continue to increase for some time, until they finally level off at somewhere approximating the “true” prevalence rate. The study’s message, according to autism researcher Bennett Leventhal, is that “if you really go look carefully among all children everywhere, you find that things are far more common than you previously expected.” This is true not just of ASDs, but of pretty much every medical condition that has ever been screened for. If you don’t look for it, you won’t find it. If you do, you will, often at a much higher rate than you would ever have guessed.

I like to go back to an example I use time and time again. I use it time and time again because it’s about as good an example as I can find. Antivaccinationists like to use the argument that increased diagnosis and screening alone can’t explain such a large increase in a “genetic” disease. Thus, to them, autism can’t possibly be due to a genetic condition. Rather, it must be due to “environment”—cough, cough, vaccines, cough cough. However, as I believe to be worth repeating, they are quite wrong in the premise behind their argument.

If there’s a single rule I’ve learned over the last few years of looking into topics such as mammography, PSA screening for prostate cancer, or ultrasound screening for thyroid cancer, it’s that whenever a mass screening program for a medical condition—any medical condition—is undertaken, more people will acquire that diagnosis—sometimes many, many more. For example, let’s look at cancer, specifically breast cancer, since that’s what I know best in medicine.

I did a talk a while back in which I addressed this very issue; so I had to look up the data. Specifically, I looked at ductal carcinoma in situ (DCIS), which is a premalignant precursor of breast cancer. Basically, it’s cancerous cells that haven’t broken out of the breast ducts yet. What percentage of DCIS lesions progress to full-blown invasive cancer is not fully known, but it’s clear that some can and that some remain indolent, never endangering the life of the patient. Back in the early 1900s, DCIS was a rare diagnosis because by the time such lesions grew large enough to be a palpable mass, they almost always had become invasive cancers. (We can argue about whether only the lesions that progressed to cancer would grow large enough to produce a palpable mass or not; it’s quite possible that that’s largely the case.) Enter mammography. Now, thirty years or so after mass mammographic screening programs proliferated, DCIS is a very common diagnosis. Indeed, approximately 40% of breast cancer diagnoses are in fact DCIS. A recent study found that DCIS incidence rose from 1.87 per 100,000 in the mid-1970s to 32.5 in 2004. That’s a more than 16-fold increase over 30 years. Does anyone think that the “true” incidence of DCIS rose by 16-fold? Certainly I don’t. We have no evidence that would suggest that it increased by even two-fold. No, the increase in incidence of DCIS is nearly all due to intensive screening for cancer through the use of mammographic screening.

Think of something like hypercholesterolemia. Fifty years ago, it was an uncommon diagnosis. Changes in diagnostic criteria and screening have lead to an explosion in diagnoses, with large proportions of the population being on statins. Heck, before the 1920s doctors didn’t routinely measure systolic/diastolic blood pressure ratios; so there were few, if any, cases of hypertension because doctors weren’t looking for it. Even over the last decade, prevalence of hypertension has increased (for instance, in Canada). Perhaps a better marker for hypertension diagnoses is the percentage of adults who have been prescribed antihypertensive medications, which has skyrocketed since 1950. Of course, over that time, the definition of what constituted “hypertension” has changed markedly, to lower and lower diastolic and systolic pressures. Amusingly, various denialists lambaste such broadening of diagnostic criteria to claim that hypertension is an “engineered” epidemic, while denialists of another stripe (antivaccinationists) take advantage of the broadening of the diagnostic criteria for autism/ASDs in the 1990s to link the entirely predictable increase in ASD prevalence to their favorite bogeyman, vaccines.

Once again, definitions of medical conditions matter. They can have a huge influence on prevalence rates observed. Moreover, if you don’t look for something, you won’t find it, and if you do look for something, you will find a lot more of it than you expected. It is quite possible that that is what’s happening with autism, but such a narrative doesn’t fit into the vaccine-autism idea. The antivaccine movement needs an increasing apparent autism prevalence.

The antivaccine movement reacts

Predictably, based on the intense “preparation” by blogs like AoA, I wasn’t surprised to see that the antivaccine movement was ready to pull out the same sorts of histrionic reactions to this CDC report as it did to the CDC report two years ago. Predictably, SafeMinds denied that, well, I’ll let SafeMinds say it:

Katie Weisman of SafeMinds stated, “Broader criteria and awareness cannot account for this magnitude of increase. The federal government continues to spend millions of dollars ineffectively and ‘potentially duplicatively’ according to a recent GAO report. We need to identify environmental triggers for autism, prevent them, and develop effective treatments.”

Never forget that in anti-vaccine-speak, “environmental triggers” is a code word for vaccines. Weisman is also attacking a straw man, which is the straw man I alluded to earlier. The issue goes far beyond “broader criteria and awareness.” It involves both broader criteria and intensity of screening for developmental disorders, including ASDs. “Awareness” is too vague a term. Specifically, what likely accounts for the increased prevalence of ASDs includes a combination of broader diagnostic criteria, diagnostic substitution (i.e., conditions that formerly weren’t diagnosed as ASDs now fall under the the diagnosis of an ASD), and increased screening and concomitant availability of services.

If you don’t believe me when I say that “environmental triggers” is a code term for “vaccines,” just take a look at SafeMinds’ followup, Top Ten Things to Know about the CDC Report on Autism Prevalence. It’s a mix of self-reported weaknesses of the CDC report, such as the point that the ADDM sites were not selected to be representative of the US population and that ADDM sites change over time, making direct comparisons over time problematic. Of course, one can’t help but note that SafeMinds has no trouble assuming that the comparison between 2012 and 2014 (or 2010 and 2014) is perfectly valid, that autism prevalence really has increased 30% over two years, and that the difference couldn’t possibly be influenced by differences in ADDM sites. In any case, here come the antivaccine points:

Inaccurate Information Regarding Thimerosal Exposure: Thimerosal was not completely removed from vaccines in 2002. The concerns regarding the use of mercury (thimerosal) in infant vaccines surfaced in July of 1999 and it took several years for manufactures to alter their production process to remove or reduce thimerosal content. Vaccines that were being made during these transition years that contained thimerosal continued to be released with 2 year expiration dates, which means children in this report were still receiving thimerosal containing vaccines. Infants in high risk categories were also recommended to receive flu vaccines with mercury starting at 6 months of age and annually thereafter. In addition, the CDC Advisory Committee for Immunization Practices recommends that all pregnant women receive flu vaccines during pregnancy of which the vast majority contained mercury. The fetus accumulates mercury at higher levels than the mother and exposure to mercury during pregnancy is documented to cause neurological harm. Therefore it is impossible to report that there is no association between mercury in vaccines and autism prevalence.

The problem, of course, is that this study never said anything at all about thimerosal and autism. That’s not what it was designed to do. We have plenty of other studies that did look at that question to tell us that thimerosal in vaccines is not associated with autism. Nice straw man, though.

Of course, if it’s not thimerosal in vaccines, it must be the vaccines themselves, right? At least, so sayeth SafeMinds:

Given that the ADDM researchers had access to medical records, a valuable opportunity to evaluate immunizations, adverse reactions, and the development of autism has been ignored. We have had two decades of lost opportunities, which shows no sign of changing. The paper states,” Other topics of interest focus on socioeconomic indicators as well as perinatal risk factors such as timing of conception, weight gain during pregnancy, parental age, and interpregnancy interval.” The CDC failed to mention the many other factors which studies are showing increases autism risk, including air pollution, pesticides, proximity to toxic release sites, and medications such as acetaminophen and anti-depressants. While the CDC/HHS continue to tell the public that there is no link between vaccine injury (and exposure to mercury) and the onset of autism, a study conducted by EBCALA[3] and published in the peer-reviewed Pace Law Review confirmed that the government has compensated at least 83 families in the Vaccine Injury Compensation Program whose child suffered a vaccine induced brain injury resulting in the onset of autism.

In other words, SafeMinds is criticizing the CDC for not examining the hypothesis that they want the CDC to examine, a hypothesis that has been thoroughly discredited, citing a highly dubious “study” by a lawyer about legal claims whose conclusions were easily refuted and which was unethically carried out without institutional review board approval.

Meanwhile, AoA ramped up the nonsense with a series of truly silly Facebook memes. Perhaps the silliest of them all is this one:

stupidantivaxmeme

To this, I reply, using my own specialty as an example: How could doctors in the 1970s have missed so many cases of DCIS? How could doctors in the 1950s have thought that the best treatment for breast cancer was a radical mastectomy? How could doctors in the 1960s not have realized how useful chemotherapy was for certain cancers? Medical science advances. The way I treat breast cancer now is actually significantly different than what I did 15 years ago, and how I treat it as my career is near to winding up in 15 years will likely be significantly different from how I do it now. The same is increasingly true of how it is diagnosed and characterized, given the rapid development of molecular medicine techniques being used to characterize tumors. Compared to 15 years ago when they did, today most women don’t have all the lymph nodes under their arms removed. Lots of them have chemotherapy first instead of after surgery. We do fewer mastectomies. There are new, targeted therapies. We can predict better who does and doesn’t need chemotherapy. For instance, as recently as ten years ago, a lot of women with node-negative estrogen receptor-positive cancers got chemotherapy based solely on the size of their tumors. Now, thanks to a 21-gene assay, we can much more accurately separate the women with such tumors not likely to benefit from chemotherapy from those who are and treat each accordingly.

My god, man! Those oncologists ten years ago must have been a bunch of idiots to have subjected so many women so unlikely to benefit to such toxic chemotherapy!

See what I’m getting at?

Of course, I love that scene from Star Trek IV: The Voyage Home, but, even as amusing as it is, it still annoys me to some extent, and that’s the assumption that doctors practicing in the past were somehow less intelligent, more ignorant, or even somehow “barbaric,” simply because they used techniques that we now know today to be inferior to what we have now. Doctors do the best they can with the medical and scientific knowledge of the times. The reason we still use chemotherapy, for instance, is because we haven’t (yet) found something that works better with lower toxicity.

The way we diagnose autism now and how we screen for it is different than it was 20 or 30 years ago, and arguably our understanding of it has greatly improved. That the autism prevalence rate from 10 or 20 years ago was much lower than it is now has nothing to do with pediatricians from 20 years ago being “a bunch of idiots” who “missed” so many autism diagnoses. It’s just that our understanding of autism and ASDs has evolved, as is the case with many medical conditions. Lots of what I learned in medical school 26 years ago is now obsolete. Lots of what I learned in residency 18 years ago is obsolete. Lots of what I learned in fellowship 15 years ago is now obsolete. Medical science advances and evolves, and physicians have to be continually learning to evolve with it. People who make arguments like this assume that all autism is the most serious kind, with obvious flapping, stimming, and other behaviors that define the most severe cases of the condition. Diagnostic criteria have broadened markedly since then.

Contrary to the hysteria over the numbers coming from the antivaccine crowd and, I should add, the rather clueless reporting that I’ve seen that stops at mentioning the 30% increase in ASD prevalence over two years and doesn’t delve into the nuances, these numbers do not represent a crisis. They do not represent evidence in support of a link between vaccines in autism. They don’t even really suggest a link between environment and autism. That’s not what this study was intended to do. What they do mean is that medicine is getting better at defining what autism is and diagnosing it and that there is still a ways to go, particularly in underserved communities and among underserved minorities. That’s why I agree with Shannon Des Roches Rosa. It’s time to keep calm and think critically, something antivaccinationists are unable or unwilling to do.

Now I just wonder if in 2016, I’ll have to do another post entitled Autism prevalence: Now estimated to be one in [insert next CDC report's number here], and the antivaccine movement goes wild.

Posted in: Diagnostic tests & procedures, Epidemiology, Neuroscience/Mental Health, Science and the Media, Vaccines

Leave a Comment (128) ↓

128 thoughts on “Autism prevalence: Now estimated to be one in 68, and the antivaccine movement goes wild

  1. John McSorley says:

    Hello – my apologies for my ignorance so please bear with what must be a silly question.

    In your post you state

    For one thing, the prevalence seems to vary in different communities and among children of different races. The CDC found white children are far more likely to be identified with autism, even though scientists don’t believe the rates are truly different between whites, Hispanics or blacks.

    That means that the discrepancy lies in the diagnosis and services available in different communities.

    Not expert with HTML tags either.
    My question is this – I am as a lay person hearing more articles and stories in the press pushing diagnosis back and suggesting earlier development of autism. A genetic rather than developmental cause is at least being mooted. If there is a genetic component why isn’t there a reasonable possibility of a racial link?

    You seem to suggest that this is all about availability of diagnostic facilities/resources/personnel in less advantaged communities. Would your assumption change if this could be compensated for (either statistically or by improved resources) with an effect still showing or is there some other basis for assuming its non-genetic?

    Thank you for your patience.

    1. Andrey Pavlov says:

      If there is a genetic component why isn’t there a reasonable possibility of a racial link?

      That is indeed possible. However, we don’t have any real evidence that it is so. That alone isn’t much, but we also have some prior probability to help us think that is unlikely. There are traits that different “races” (I put that in quotes for a reason I’ll get to in a minute) tend to have, like sickle cell disease or thalassemias. But most things are reasonably common. And neurodevelopment is going to be one of our older developed traits with a high fixative selection pressure. Meaning it was our one huge advantage that let us dominate the earth, so most people would be expected to have a reasonably similar complement of genes relevant to that. Also, there is no identified selective pressure that would select for the trait. And lastly, neurodevelopment is a very complex set of traits with large amounts of genes coding for it and a lot of epigenetic and environmental interplay. That means it is not likely to be some sort of single gene trait that could have developed in a geographic population and was spread along those lines in a standard sort of inheritance pattern. The “unit” of autism is comprised of many genetic components, so to speak.

      And “race” is actually a very crude delineator of population. In terms of human genotyping and how inheritance patterns really matter it is simply too blunt and crude a metric to truly be meaningful. “Black” encompasses “African-American” but that could include many disparate peoples from Nigerians to Aboriginals to Kenyan. And if you draw out the relations via genetics those are very, very different groups.

  2. What science based? says:

    What a pile of bullshit propaganda is this article.

    1. Windriven says:

      Your assertion makes it so?

      Do you have some evidence to refute the post or are you just a loud-mouthed moron shrieking against the injustice of information that doesn’t conform to your narrow world view?

    2. Sullivanthepoop says:

      Aww … didn’t it say what you wanted to hear?

  3. Bruce says:

    Subtleties are always lost on those with agenda. The diagnosis prevalence and the actual numbers are extremely hard to match up. Where I work there is an active campaign to get INCREASED diagnosis of dementia and obesity as it is well recognised that the numbers reported are far lower than the reality. This does not mean that when the prevalence increases it implies the actual numbers have increased, it just means we are recognising it more. I suspect as such with autism.

    I have also seen a lot of noise recently on the early development of autism:

    http://www.nejm.org/doi/full/10.1056/NEJMoa1307491

    I suppose anti-vaccers will say something like that is propaganda.

  4. Zoe says:

    I certainly think it’s possible there is an environmental component:

    http://www.sciencebasedmedicine.org/autism-and-induced-labor/

    However, the underlying issue Dr. Gorski speaks of reminds me of the Jon Stewart clip that made the rounds a few years ago:

    http://thedailyshow.cc.com/videos/x1h7ku/weathering-fights—science–what-s-it-up-to-

    1. WilliamLawrenceUtridge says:

      As Dr. Novella states however, how do you know that the induction is causing autism? How do you know the autism isn’t causing a need for induction – say, because an autistic child’s head, a limiting factor in birth, is larger than their peers (on average)?

      Science is complicated because reality is complicated.

  5. Kira says:

    My oldest (fully-vaccinated according to CDC guidelines) daughter has ASD. I *hate* Autism Awareness Month/Day. No only do I have to read the nonsense about vaccines and GMOs and food-dyes and toxins, but I get to read righteous rants about how it’s better for a child to die of a vaccine-preventable disease than to live like my child.

    1. lilady says:

      Kira, my child who died nine years ago at age 28, was born with a rare genetic disorder which caused multiple and profound intellectual, physical and health impairments. He also had “autistic-like behaviors” (diagnosed using the DSM II Diagnostic Criteria).

      I have been an advocate for 37 years and have seen firsthand how conspiracists and anti-vaccine groups use Autism Awareness Days/Months to disseminate their pseudoscience about vaccines…and how they label their own children as “vaccine-damaged”.

      I’ve also seen a wave of thousands of parents of children diagnosed with ASDs who are making a stand on behalf of their children and on behalf of science.

      The crank anti-vaccine groups (Age of Autism, the curiously named National Vaccine Information Center and SafeMinds), take advantage of Autism Awareness. There are a slew of Science bloggers, who, like Dr. Gorski, post articles which analyze the CDC ASD prevalence report and other scientific studies that refute what crank “journalists” publish. We really are making great progress to dispel the blatant misinformation about ASDs.

      1. Kira says:

        I’m very sorry for your loss and I very much appreciate the decades of advocacy (longer than I’ve been alive!). I know how easy I have it, compared to what you must have gone through. I have also seen, in the few years since my daughter has been diagnosed, that the voices of autism acceptance and science-based viewpoints are getting much more attention. It gives me a lot of hope for my children’s future.

    2. Young CC Prof says:

      That is, in my opinion, one of the ugliest parts of the antivaxxer/autism “cure” movements. The idea that autism is the worst thing that could possibly happen to a child, including death. Many (almost all?) of these folks have autistic children of their own!

      1. Kira says:

        It’s sickening.

        BTW, CC wouldn’t stand for Contemporary Civilization by any chance?

    3. Birdy says:

      My oldest (age 7) has autism as well and I get so, so frustrated when April rolls around.

      For one, I despise Autism Speaks, who heavily promote this and it makes me intensely frustrated to see well-meaning friends trying to raise money for that organization. They ignore the voices of adult autistics and continue to use language that is incredibly insulting and contributes to the attitude that children are better dead than autistic.

      The ‘real child is stolen’ thing. I hate that. My REAL child is autistic. He wasn’t stolen by anything. He is not a disease to be cured, he is not a walking tragedy, he’s a quirky little nerd just like me and with years of appropriate therapies, which are ongoing, has gotten to the point he operates reasonably well in a normal, bilingual classroom. He is a Mac in a world of Windows – not worse, just different, and needed some help learning to work with a different OS.

      Bit of a rant there, sorry. The whole thing just gets to me because this whole month is about people seeing my really amazing kid as some damaged victim who needs to be fixed.

      1. Kira says:

        That is exactly how I feel about it – rant away!

      2. mary says:

        Mom of a twice-exceptional kid here… I concur. Rant away, my friend. Preaching to the neurodiversity choir.

  6. Jay Gordon says:

    David, you make some good points.

    Your hyperbole about “idiots” does not contribute to the discussion.

    I agree: We have broadened diagnostic criteria and have gotten better at recognizing autism.

    But there is much more autism than there was 10, 20 or 30 years ago.

    You have barely addressed that in your thousand of words above. Why is that?

    Autism and many other medical conditions have a genetic predisposition and environmental triggers. We must keep investigating both and ignore none of the possibilities.

    Best,

    Jay

    1. Harriet Hall says:

      Yes, autism is almost certainly genetic and may well be influenced by environmental factors. But since autopsy findings have shown abnormal brain architecture that could only have developed prenatally as the brain was being formed, isn’t it time to stop looking at post-natal and peri-natal factors? And isn’t it time to acknowledge that there is no rationale for delayed vaccine schedules?

    2. lilady says:

      Dr. Jay Gordon, the letter that you sent to the parents of your young patients about MMR vaccine and the measles outbreaks in California, does not contribute to public health initiatives to protect all children from measles.

      http://shotofprevention.com/2014/03/31/say-nowaydrjay-dont-bring-measles-back/

    3. Bruce says:

      Given that you say this:

      “I agree: We have broadened diagnostic criteria and have gotten better at recognizing autism.”

      How can you be sure of this:

      “But there is much more autism than there was 10, 20 or 30 years ago”?

      Do you have access to a study that shows absolute autism levels 10, 20 and 30 years ago? I would be very interested in seeing this.

    4. WilliamLawrenceUtridge says:

      But there is much more autism than there was 10, 20 or 30 years ago.

      How do you know? Because you saw less of them? How do you feel about the fact that families used to warehouse such children in institutions in the past, or the considerable stigma of having such children, and how might these factors influence diagnosis rates?

      What environmental triggers exist, beyond those well-recognized as part of the etiology of autism? Are you willing to admit that even though the risk cannot be reduced to an absolute of zero, that at minimum the likelihood of vaccines causing autism is extremely low and that time and resources are better-spent elsewhere than further investigating this alleged connections?

      1. David Gorski says:

        How do you know? Because you saw less of them?

        That’s exactly what Dr. Jay means. To him, personal anecdotal clinical experience trumps science. We’ve been over this before many times over at my not-so-super-secret other blog. No matter how many times we get him to admit that there’s no convincing science that vaccines cause autism, he clings to his belief that they can. Ditto with the “autism epidemic.” No matter how much we explain how things like diagnostic substitution, broadening of the diagnostic criteria, and increased screening and availability of services have led to such a massive apparent increase in autism prevalence, he clings to his personal observations tinged with obvious confirmation bias that he never almost never saw autistic children 20 years ago as evidence that the increase in autism prevalence couldn’t possibly be due to those factors.

        1. WilliamLawrenceUtridge says:

          Does he ever consider the fact that part of the reason he sees such an increase is because all those vaccine-avoiding, granola-eating, black-walnut-dosing, anti-gluten, caesin-free, lupron-giving parents seek him out, thus driving up the number of cases of autism in his practice? ‘Cause that’s a pretty obvious confound right there.

    5. windriven says:

      “Your hyperbole about “idiots” does not contribute to the discussion.”

      Really? I thought he made the point quite well that hindsight has a remarkable ability to make those who practiced the best science known in their time appear stupid.

      “I agree: We have broadened diagnostic criteria and have gotten better at recognizing autism. … But there is much more autism than there was 10, 20 or 30 years ago.”

      ? That borders on an inanity. We have broadened the definition of what constitutes a ‘bright’ star. There are many more ‘bright’ stars than there were 10, 20, or 30 years ago. What does that even mean?

    6. David Gorski says:

      Your hyperbole about “idiots” does not contribute to the discussion.

      Uh, Jay, I wasn’t the first person to say anything about “idiots,” and the only hyperbole about “idiots” came from the antivaccine activists spreading the meme I mentioned. Indeed, I was ridiculing those who are spreading a meme that claims that the increased prevalence of autism is equivalent to calling pediatricians from 20+ years ago “idiots” who “missed all those diagnoses”! Seriously. The point was that physicians of those days were no more “idiotic” than physicians of today because physicians practice based upon what is known and understood at the time.

      I agree: We have broadened diagnostic criteria and have gotten better at recognizing autism.

      But there is much more autism than there was 10, 20 or 30 years ago.

      And how, specifically, do you know that there is “much more autism than there was 10, 20, 30 years ago”? There is much more DCIS than 30 years ago now—16-fold more—but DCIS incidence has almost certainly not increased by 16-fold, or even by 2-fold. In fact, its “true” incidence probably hasn’t changed much at all. See the parallel? It’s quite likely that the “true” incidence of autism hasn’t changed much at all. We just screen for it more intensively and earlier, and the diagnostic criteria have broadened.

      You have barely addressed that in your thousand of words above. Why is that?

      Except that I did address it quite explicitly. You just didn’t like how I addressed it. So you accuse me of not addressing it.

      Autism and many other medical conditions have a genetic predisposition and environmental triggers. We must keep investigating both and ignore none of the possibilities.

      No one is denying that there might be an environmental influence on autism. However, it is quite clear that that environmental “trigger,” whatever it is, if it even exists, is not vaccines or mercury. That’s been demonstrated quite conclusively.

    7. Chris Hickie says:

      Prevented any autism yet, Jay?

      1. Lytrigian says:

        Well, HE certainly doesn’t see autism in anything like 1 in 68 of his own patients, I’ll bet. And as we all know for Dr. Jay here, what he sees in his own practice must be conclusive for everyone, everywhere.

    8. sullivanthepoop says:

      Dr. Jay, Isn’t what you are really saying is that you still want them to look at vaccines even though everything points to a brain development problem during pregnancy? I mean if it is just be honest.

  7. wanda says:

    I’m a little worried about all these ASD children who don’t have intellectual disability and who probably wouldn’t have been diagnosed with anything a decade ago. Is there anything really wrong with them? If not, why are we diagnosing them with anything today? Is a diagnosis for that kind of person empowering or limiting?

    Some context: I recognize some autism-like traits in myself (which were stronger in childhood), and I went to an engineering-focused college where maybe a third to a half of my friends had some. We certainly joked all the time about everyone having Asperger’s. None of us had a diagnosis, though, and a decade out, we’re all functional, mostly happy human beings.

    1. Columbina says:

      Each individual with an ASD diagnosis would probably give an individual and unique answer to your questions.
      From my personal experience, I think the changes in modern working practices have made adults with ASDs more visible, certainly in many career areas.
      Blackberries, Iphones etc blur the boundaries between work and not work and increase the expectation you will be contactable 24/7. An increase in ‘Management Techniques’ and the concept of being judged on your softskills rather than the results. An expectation that each individual will win their own work and clients, rather than the concept of ‘rainmakers’ and work being passed down from senior to junior. The concept of selling yourself across multiple platforms.
      With communication and empathy so key in a connected, ever-changing, meme driven society, I, as an individual with an ASD feel more unconnected than ever in a workplace enviroment.
      Having a diagnosis at a young age, for children without intellectual disabilities, may enable them to better focus on a career pathway which will fit with their abilities.

    2. scribblingTiresias says:

      Hi there, I’m a long-time lurker. I also am an autistic person without any intellectual disabilities.

      The thing is that autism isn’t just a social deficit. If it were, you’d be right: it’d be hard to tell the difference between a high-functioning autistic kid and a shy, awkward nerd.

      Autism also involves problems with executive function (planning, making decisions, and such), and sensory issues. Loud noises and spicy foods are physically painful to me. I couldn’t go to a rock concert because the noise would just be too intense. I work in a call center, and even just being in the middle of the call floor is kind of painful.

      Knowing that I have autism, and the sensory issues that go along with autism, is a godsend. I can give myself a little more time to plan things, I can avoid situations that set off my sensory issues (and stim when they are set off), and I can know that I’ve got trouble communicating with people, so if people aren’t understanding me, I can reword what I have to say in a different way. Basically, it’s good to have a word for what I am, so I can play to my strengths and work around my weaknesses.

      @Doctor Gorski- Thank you so much for this site. I was subjected to a lot of alternative autism “cures” growing up, and when I came to do my own research on it, I found this site. You’ve gotten rid of a good deal of the guilt and fear I was living in.

  8. Jay Gordon says:

    Wanda–

    Really excellent post.

    I know some children, teens and families whose lives are much harder because of autism and others (fewer . . . ) who absolutely revel in their differences and have used them to great advantage in successful lives. It is about the former that I obviously worry the most.

    Bruce, I believe those data are available from the CDC. I would question their reliability in light of different criteria for diagnosis in 2014.

    Jay

    1. qetzal says:

      Wait. You’re saying that the data Bruce asked for to support your claim, data that shows lower absolute autism levels in the past, are available from the CDC. But you question the validity of that data.

      So let me get this straight. You know that there’s much more autism today, because CDC has data showing lower absolute autism levels in the past, which data you don’t trust, so that’s how you know that there’s much more autism today. Have I gotten that right?

    2. Bruce says:

      Jay,

      You can’t run an argument on circular use of the data like that and hope to get away with it.

      You do not have the absolute data, no one does because of all the many reasons that have been given. As much as you want there to be a simple answer to all of this, I am afraid that working in or near any credible medical practice population you will know that diagnosis and prevalence are very difficult things to attach reliable numbers regarding the overall population.

  9. Jay Gordon says:

    There are a lot more children with autism right now. The CDC’s old data are most likely based on different criteria than we have now.

    But the fact remains, something has caused a rise in autism not just the diagnosis of autism.

    Jay

    1. Windriven says:

      We understand your assertion, just not the evidence on which you make it.

      1. David Gorski says:

        Exactly. Please, Dr. Jay, elaborate and back up your assertion with evidence.

    2. WilliamLawrenceUtridge says:

      But the fact my unjustified, unsubstantiated, confirmation-bias informed opinion unbacked by any scientific evidence remains, something has caused a rise in autism not just the diagnosis of autism.

      Fixed it for you. Unless you’ve got something aside from your opinion with which to back your statement.

      We’re all waiting.

  10. bisi says:

    Dear Dr. cancer surgeon,
    What does a vaccine really contain? do they teach you that in medical school ?
    Why so many conventional medicine doctors refuse to take conventional treatment ?
    Because they KNOW the truth about side effects and adverse reactions…
    Think about your patients-they are real people with real lives, and not just a source for increasing your already huge income.
    It is a call for your conscience … Just think, pray ,meditate or whatever

    1. Harriet Hall says:

      I bet any cancer surgeon knows far more about what is really in vaccines than you do.
      I don’t know of any conventional doctors who reject conventional treatments. Where did you dig that myth up?
      What makes you think recommending vaccines would increase a cancer surgeon’s income?
      Would you care to guess Dr. Gorski’s income? I predict your estimate will exceed the reality.
      I agree with everything he says and I get no income from patients at all. I am retired.
      Instead of recommending that others pray or meditate, why don’t you try learning some science and replacing your misconceptions with some actual facts?

    2. WilliamLawrenceUtridge says:

      Vaccine contents are found in their information sheets. Individual ingredients are selected for reasons of storage, antigen or efficacy. Expert pediatric disease specialists, toxicologists, epidemiologists and more evaluate the individual vaccines and their ingredients for safety and efficacy.

      They’re not just blindly thrown together you know, it takes time, effort and planning to maximize benefits, minimize discomfort and generally deliver a safe product that prevents millions of babies from dying of pretty horrible diseases.

      Dr. Gorski’s a cancer surgeon, he doesn’t make money from vaccines. In fact, few pediatricians do, for many it’s a loss of income because reimbursement is low but they still take the time to deliver them.

    3. sullivanthepoop says:

      Doctors, especially pediatricians vaccinate at a higher rate than the general public. How does that jive with your statement?

    4. Calli Arcale says:

      The only example I can think of of a doctor refusing conventional treatment was my grandfather. Awesome man. He was a general surgeon for many years, even served in a MASH unit in WWII and Korea. Lots of great stories. When he developed symptoms consistent with pancreatic cancer, he declined conventional treatment. He even declined the biopsy that would be required to prove it *was* pancreatic cancer. This is because he was 91, satisfied with his life, and really not interested in undergoing surgery at that point in his life. He just didn’t see any point in treating the condition. But I rather think that’s not what you meant, bisi. ;-)

  11. Lawrence says:

    Hmmmmm…..let’s see what are more likely culprits:

    1) Diagnostic Substitution – we don’t see nearly as many children labeled as “mentally deficient” nowadays, do we? So, where did all of those kids go?

    2) Both men & women are having children later in life – which has already shown to have an impact on the genetic health of the baby (i.e. increased rate of Downs for instance)

    3) Idiosyncratic behaviors that are now classified as “mild autism” were once viewed as just “quirky or strange” in the past.

    Those are three hypotheses that are more credible than trying to link vaccines to autism….just based on common sense alone.

    Dr. Jay – your letter to your patients was one of the most irresponsible screeds I’ve ever read. How dare you call yourself a Doctor.

  12. Lawrence says:

    I do admire that the Anti-Vax Militia can, on one hand, hold the CDC in complete contempt and accuse them of covering up the vaccine-autism connection, while at the same time holding up Autism Prevalence numbers from the CDC as some sort of gospel….

    1. David Gorski says:

      Heheheh.

      Yes, indeed. The CDC is reliable when it says autism prevalence is skyrocketing, but when it says vaccines don’t cause autism it’s a conspiracy, I tell ya! A conspiracy!

  13. Jay Gordon says:

    Plus ça change, plus c’est la même chose

    The incidence of autism and the incidence of diagnosing ASD have both increased.

    Lawrence, read more. My screed could be in your top ten, but you still need to look around.

    David, the evidence? The CDC’s own report and the accompanying charts and diagrams. That is just too easy.

    1. Windriven says:

      “The CDC’s own report and the accompanying charts and diagrams. That is just too easy.”

      Well Dr. Gordon, Maybe you can help those of us who aren’t as brilliant as you on this. I’ve run through the CDC report looking for some detailed information – some actual evidence – supporting significant increases in the actual, real rates of ASD versus increases ascribable to changes in diagnostic criteria and coding over time. And I found squat.

      You seem to be really good at breezily fluttering your hands and making broad pronouncements. How ’bout manning up with some real evidence from the CDC report? The evidence that you claim is there. Copy and paste. Easy peasy.

    2. David Gorski says:

      David, the evidence? The CDC’s own report and the accompanying charts and diagrams. That is just too easy.,

      Humor me. Explain how the CDC report shows a real increase in ASDs and not one due to broadening of the diagnostic criteria and more intensive screening, coupled with diagnostic substitution. (Hint: It doesn’t, but maybe you can convince me if you make a cogent, science-based argument.)

    3. qetzal says:

      David, the evidence? The CDC’s own report and the accompanying charts and diagrams.

      But at 2:02 PM, you said you “question[ed] the reliability of that data!” So your evidence is data that you yourself consider unreliable?!!!

      I feel so sorry for your patients. “Here. Take this. I know it will help because there’s unreliable data that it’s safe and effective!”

  14. RobRN says:

    @#11 bisi sez: “…so many conventional medicine doctors refuse to take conventional treatment ”

    It’s likely that he/she has heard the urban legend/meme that “76% of doctors would refuse chemotherapy!” The real story behind this gross misrepresentation is that in 1985, almost 30 years ago, a survey was done asking a small number of oncologists if they would accept a specific type of experimental chemotherapy (cisplatin) with many side effects for a very specific cancer – for non-small cell lung cancer. In 1985, this cancer was statistically considered incurable. Since 1985, great strides have been taken in the treatment of non-small-cell lung cancer. There were two follow-ups surveys related to this exact same cancer and MDs willingness to accept chemotherapy. One is from the British Journal of Cancer (1991), 64, 391-395, “Oncologists vary in their willingness to undertake anti-cancer therapies” where the surveyed oncologists were 72% “Probably or definitely yes” accepting of chemotherapy for non-small cell lung cancer. The other, a survey done at the National Comprehensive Cancer Network meetings in March 1997, showed 64.5% of 126 oncologists would accept chemotherapy. Modern medicine is always analyzing , learning, accepting and adopting what is effective!

    1. David Gorski says:

      Yup. I blogged about this very myth before. I just don’t have time right now to find the link.

  15. lilady says:

    “There are a lot more children with autism right now. The CDC’s old data are most likely based on different criteria than we have now.

    But the fact remains, something has caused a rise in autism not just the diagnosis of autism.”

    Spot on Dr. Jay. Are the changing DSM Diagnostic Criteria implicated in the increased prevalence of ASDS?

    http://www.unstrange.com/pdd.html

    Now about that dreadful letter that you sent to the parents of your young patients?

    “Greetings!

    Our office has received a large number of phone calls and emails about measles. There are 21 reported cases in Orange County. I’m not aware of the number of cases in our immediate area. In July, 2014, we celebrate the 30th year at 901 Montana and we have never had a child in our office contract measles. As many of you know, I use the MMR vaccine more sparingly than most pediatricians so I’m a bit surprised that the number is zero, but it is.

    The media, as they often do, are covering this story quite heavily and the headlines make it appear that there is imminent great danger. In fact, the last fatality from measles in the USA was eleven years ago in 2003. Headlines speak of “ten times more measles in 2014.” The newspaper articles often don’t mention that California had very few cases of measles in the past five years so the 35 cases reported among 38,000,000 Californians is not a frighteningly large numerical jump. There have been about 80 cases of measles in the United States this year. All of these cases began with importation by travelers and then spread to close contacts. Measles is unlikely to be spread by a brief encounter or sharing a BART train.

    If you would like the MMR vaccine, please feel free to get it. My personal reservations have nothing to do with Dr. Wakefield’s “Lancet” article and are not supported by published medical research. These reservations are supported by observation and anecdotal evidence only.

    The CDC defines outbreak as two cases spread from the same source. The measles outbreak of 2014 does not pose a risk to your healthy child. Best, Jay”

    Good grief Dr. Jay. How does it feel to be a pariah amongst your peers at the AAP?

    1. S says:

      So, for the record, Dr. Jay, you’re telling me that measles will not pose any risk to my healthy newborn?

      1. Bruce says:

        What he is saying is that it poses no risk to your healthy newborn until your healthy newborn is not healthy anymore.

        Just like my son was born in Scotland, but if he does not wear a kilt, eat haggis and guzzle IRN BRU then he is not a real Scot.

    2. Andy says:

      So the death of a previously healthy 20 something year old in the recent outbreak in Wales in the UK… How precisely does that fit into the equation that measles won’t damage a “healthy” person? Oh that’s right, it doesn’t.

  16. Windriven says:

    @lilady

    “The measles outbreak of 2014 does not pose a risk to your healthy child.”

    He didn’t really say that, did he? Serious complications for healthy children are rare (but NOT non-existent). But measles is highly contagious and the disease is dangerous for adults and extremely dangerous for the immunocompromised. I guess Dr. Jay’s attitude is, ‘as long as your healthy kid is OK, f*ck everybody else.’

    There are, so far as I know, no non-human animal reservoirs for measles. Measels would go the way of smallpox if only for the political will and the absence of slack-jawed jabbering idiots, some of whom managed to earn an MD degree.

  17. lilady says:

    Windriven, I’m giving props to Dr. Jay for stating that “My personal reservations have nothing to do with Dr. Wakefield’s “Lancet” article and are not supported by published medical research. These reservations are supported by observation and anecdotal evidence only.”

    You are correct. Human beings are the only reservoir for the measles virus, and, but for political unrest and the anti-vaccine movement, we would have a chance to eradicate measles from the face of the earth, as we did with Smallpox and Rinderpest:

    http://jid.oxfordjournals.org/content/204/suppl_1/S98.full

  18. Lytrigian says:

    It’s an interesting question for me: Looking back on my own elementary school days, and how totally clueless I was about the social activity going on around me and what it all meant, and how unable I was to relate in ways that appeared to be effortless to other kids, I have to feel that if I were growing up today I’d very likely have a diagnosis myself.

    It wasn’t until college that I was able to engage with a circle of friends, with whom I felt myself to be on equal footing, so perhaps this is also the sort of thing you can grow out of.

    So yes, Dr. Jay. Broadened diagnostic criteria do indeed account for much of the apparent increased prevalence.

    And then, I do have an autistic child, and his mother is, if anything, even more clueless than me. (I’m still socially awkward and know it. She’s socially awkward and doesn’t seem to be aware of it. But then, her coping mechanisms are diametrically opposed to mine.) That autism probably has a strong genetic component is probably the least surprising result possible for me.

  19. Jay Gordon says:

    David, just as there are certain things that you know from your extensive experience as a surgeon, there are things I know from my experience as a pediatrician.

    There are more children with autism now.

    Better and broader diagnosis? Perhaps. But there really are more children with autism.

    Denying that is just plain unscientific.

    1. Chris Hickie says:

      So, Jay, where did you get the “experience” to write a book titled “Preventing Autism: What You Can Do to Protect Your Children Before and After Birth”?

      Are you using the same “experience” in everything you do?

    2. Harriet Hall says:

      Dr. Gorski is a scientist. He knows that he can’t “know” things just from his own extensive experience. He knows that experience can be misleading and beliefs must be tested scientifically before they can be assumed to be true: a lesson that you apparently have not learned.

    3. Bruce says:

      “There are more children with autism now.

      Better and broader diagnosis? Perhaps. But there really are more children with autism.”

      Oh, repeating something without evidence does not make it suddenly true.

    4. Lawrence says:

      @Dr. Jay – once again, you appeal to your own “authority” in making that statement? Seems like you have a hard time seeing anything outside of your own clinic’s doors – given that you feel that a Measles Outbreak “isn’t” a reason to advocate for vaccinations, especially for vulnerable populations, like your own patients.

      Again, how dare you even begin to call yourself a Doctor.

    5. David Gorski says:

      David, just as there are certain things that you know from your extensive experience as a surgeon, there are things I know from my experience as a pediatrician.

      There are more children with autism now.

      Better and broader diagnosis? Perhaps. But there really are more children with autism.

      Denying that is just plain unscientific.

      No one, least of all myself, is denying that there are more children carrying a diagnosis of autism or ASD. That’s a major point of this post. Whether that means there actually is more autism is nowhere near as clear as you seem to think it is. I again cite the example of DCIS, which you obviously ignored or didn’t understand. When we started looking for it with mammography, we started finding lots of subclinical cases that were going undiagnosed—16-fold more, to be exact. And this is a condition where there is a definite, pretty clear-cut, pathological diagnosis based on tissue.

      I’ll be blunt. Your citing your experience as a pediatrician does not impress me in the least, nor would I expect other surgeons to be particularly impressed with me if I were to invoke experience. True, surgery is a little different in that it is so highly technique-driven that personal experience with the mechanics of doing specific procedures can be useful, much as one carpenter’s experience with certain materials and building techniques can be useful to another carpenter. However, personal experience in diagnosing and treating conditions can be just as misleading for surgeons as it can be for pediatricians.

      Sadly, you are the living embodiment of the old adage that the three most dangerous words in medicine are, “In my experience.” As I’ve described to you so many times before, “personal clinical experience” can be profoundly misleading. It’s a major reason why homeopaths think that their quackery works and why the history of medicine is littered with treatments that were once thought to be effective but disappointed when rigorously tested in randomized clinical trials. Confirmation bias is powerful. I would go into my usual excruciating detail again, but why bother? I’ve done it many times before over the last nine years, and it never sinks in.

    6. Andrey Pavlov says:

      I’m sorry Jay (I honestly can’t even bring myself to call you “doctor”) but this is the biggest load of tripe I’ve seen short of the True Crank Manifestos we see around these parts from time to time.

      Dr. Gorski – like all physicians – rely on experience when there is a lack of better evidence. You do not get to equivocate and say that Dr. Gorski’s use of experience in concordance with or absence of evidence is the same as your use of “experience” directly contra the evidence.

      And your letter to your patients’ families is a disgrace to our profession. You should have your license revoked and the AAP should remove you from their ranks.

  20. Windriven says:

    “Denying that is just plain unscientific.”

    Fraud. You made the claim and when called on it you fluttered like a sparrow in a birdbath and said the evidence was in the CDC paper. Now you claim it is clinical experience and that to deny it is somehow unscientific.

    Bullsh!t. You have uncloaked yourself and revealed a self-important bullsh!t artist. And that, Dr. Gordon, is about as unscientific as it gets.

  21. Marion says:

    Man, I love putting down those with no formal training in formal logic.

    They have to learn the Principle of Explosion in Logic the hard way.

    Jay Gordon, you don’t even have a real medical degree, and you never worked as a pediatrician. You just lied on your college applications, and then you changed your grade with a computer in order to graduate.

    See how easy that is?

  22. The CDC survey clearly shows autism rates are on the rise.
    From 1 in 150 in 2000
    to 1 in 70 today.

    This cannot be dismissed as change in definitions – in fact the latest changes to the definition of the disorder have been in the opposite direction – LESS inclusive than the previous set.

    Rather than admit the facts in front of him, Gorski dives into the racist argument that communities of white children have gotten better at diagnosing autism than communities of hispanic and black children! I dont even know why CDC bothered separating the children by race in their report. That just gave sinking autism deniers a racist straw to grasp onto.

    Integrative medical community has identified the autism epidemic as a direct consequence in rising drug consumption by pregnant mothers. This includes recreational drugs like alcohol and methamthetamines as well as prescription drugs including Xanex and Vicodin.

    The conventional medical establishment financed by pharmaceutical industry cashflows is very slowly catching up to this, as they say better late than never.

    1. lilady says:

      FBA: Thanks for the link to the DSM 5 Diagnostic Criteria.

      Did you happen to read the CDC report which states

      “…..A child meets the surveillance case definition for ASD if a comprehensive evaluation of that child completed by a qualified professional describes behaviors consistent with the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) diagnostic criteria for any of the following conditions: autistic disorder, pervasive developmental disorder–not otherwise specified (including atypical autism), or Asperger disorder. This report provides updated prevalence estimates for ASD from the 2010 surveillance year. In addition to prevalence estimates, characteristics of the population of children with ASD are described.”?

      You, with your colossal ignorance, stated:

      “Rather than admit the facts in front of him, Gorski dives into the racist argument that communities of white children have gotten better at diagnosing autism than communities of hispanic and black children! I dont even know why CDC bothered separating the children by race in their report. That just gave sinking autism deniers a racist straw to grasp onto.”

      Apparently you have a reading comprehension problem because you obviously did not read (or did not comprehend), the CDC Autism Prevalence Report.

      Get out an English language dictionary and a grammar book to figure out and to see the reason why the CDC provided statistics broken down into white, black and Hispanic children.

      (hint) The communities where white, black and HIspanic children reside are NOT better or NOT worse at diagnosing ASD children.

      You also made these statements:

      “Integrative medical community has identified the autism epidemic as a direct consequence in rising drug consumption by pregnant mothers. This includes recreational drugs like alcohol and methamthetamines as well as prescription drugs including Xanex and Vicodin.

      The conventional medical establishment financed by pharmaceutical industry cashflows is very slowly catching up to this, as they say better late than never.

      Huh? That link to a study of cortical tissue mentioned nothing about maternal prescribed or recreational drug use, as a factor for the prenatal brain malformations.

      Here are the conclusions:

      “Conclusions

      In this small, explorative study, we found focal disruption of cortical laminar architecture in the cortexes of a majority of young children with autism. Our data support a probable dysregulation of layer formation and layer-specific neuronal differentiation at prenatal developmental stages. (Funded by the Simons Foundation and others.)”

      Time for you to start reading that English language dictionary and grammar book, FBA.

    2. Bruce says:

      “Integrative medical community has identified the autism epidemic as a direct consequence in rising drug consumption by pregnant mothers. This includes recreational drugs like alcohol and methamthetamines as well as prescription drugs including Xanex and Vicodin.”

      Interesting,

      Do you have any figures that show that pregnant mothers are drinking and taking more drugs than previously? Are you able to show a statistical link between these mothers and a raised incidence of autistic children?

      1. It’s not a secret that pharmaceutical industry is prescribing record amounts of medication to pregnant women, as many as 50% of pregnant women today are on medication a 3-fold increase since the days when I was studying medicine.

        Antidepressants for example are routinely given out by MDs for pregnant women who come in with ANY kind of mental health complaint. Antidepressant use was less than 1% in 1980′s and is close to 10% today.

        Many of these medications have teratogenic effects, causing heart defects, mental health issues including autism, much of it has been documented.

        There is extensive evidence of harm to the fetus from recreational drugs as well, alcohol being first on that list, this has been known for thousands of years, in the roman empire if a young woman drank wine she was considered spoiled goods and unfit for marriage. There is plenty of more modern studies on the topic, just look them up.

      2. It’s not a secret that pharmaceutical industry is prescribing record amounts of medication to pregnant women, as many as 50% of pregnant women today are on medication a 3-fold increase since the days when I was studying medicine.

        Antidepressants for example are routinely given out by MDs for pregnant women who come in with ANY kind of mental health complaint. Antidepressant use in pregnancy was less than 1% in 1980′s and is close to 10% today.

        Many of these medications have teratogenic effects, causing heart defects, mental health issues including autism, much of it has been documented.

        There is extensive evidence of harm to the fetus from recreational drugs as well, alcohol being first on that list, this has been known for thousands of years, in the roman empire if a young woman drank wine she was considered spoiled goods and unfit for marriage. There are plenty of more modern studies on the topic, just look them up.

        1. Bruce says:

          Recreational drugs is a given, those should not be taken when pregnant. This is something all doctors tell expectant mothers and has been standard advice for years. What I was expecting from you was evidence that expectant mothers are taking more recreational drugs and are drinking more now.

          As for those links, one is a discussion of the evidence and it mostly says tha evidence is really patchy and you are probably better off not taking too many drugs. This is advice I know medical doctors are giving.

          The second link is from 2011 and is a small study that might link autism to SSRIs, but there was a larger study done more recently that:

          http://www.autismspeaks.org/science/science-news/reassuring-news-autism-and-ssri-use-during-pregnancy

          Even the studies I found that say there might be a link cannot rule out the fact that mothers with depression might be more liable to have children with mental health problems, and even if they do point to SSRIs being a weak factor they certainly don’t point to them being the only factor.

        2. Windriven says:

          ” There are plenty of more modern studies on the topic, just look them up.”

          No. How about citing the one that links maternal use of prescription drugs with autism. And please Fast Buck, a real study not the febrile imaginings of a fellow crackpot.

          “It’s not a secret that pharmaceutical industry is prescribing record amounts of medication to pregnant women”

          Someone should really explain to you how this works. The pharmaceutical industry can’t prescribe jack – only a duly licensed MD or DO can do that.

          “Antidepressants for example are routinely given out by MDs for pregnant women ”

          Citation?

        3. MadisonMD says:

          @FBA
          There is no doubt about the risks of alcohol on fetal development, although the link to autism is doubtful. Indeed, if there is a link it is not a strong one since most individuals with FAS are not autistic.

          The link to the 2011 CNN article to support your claims is interesting. I find it interesting that you cite CNN and not the original study. Also, you seem to have ignored this quote from the primary author:

          The lead author of the study, Lisa Croen, Ph.D., the director of autism research at Kaiser Permanente Northern California, a large nonprofit health plan based in Oakland, emphasizes the preliminary nature of her team’s findings. “This is the first study of its kind to look at the association, and the findings have to be interpreted with a lot of caution,” she says. “We can’t detect causality from one study.”

          So you are making broad conclusions based on preliminary data.

          Also telling is that your proposed causes lack specificity. You claim that any medicine in pregnancy is teratogenic, support this claim by pointing out effects on heart development and mental disease, and then autism. Yet, it is ridiculous to presuppose that they all cause autism. Perhaps one or two do– and it would be enlightening to determine the specific mechanism.

          Nevertheless, I would agree that avoidable risks in pregnancy should be avoided (including alcohol, drugs, raw seafood, etc.). Incidentally, the mother should be vaccinated for Rubella, of course to avoid another risk. Finally, if your claims are correct, then vaccines are not causative of autism and you agree with Dr. Gorski. Why don’t you say that?

          1. I wasnt claiming that every drug is teratogenic, but a lot of them are. Prescription drugs require prescription because they harm the patient. That usually includes the patient’s fetus. The latest pharmaceutical fashion is “medical marijuana” which is now a billion dollar industry causing a basket of psychiatric disorders and is a teratogen.

            The fact is, todays fetuses are bombarded with a cocktail of prescription and recreational drugs for the benefit of GlaxoSmithKline and Bayer shareholders and no benefit to the fetus.

            Yes, I agree with Gorski on the benefits of the measles vaccine. And polio, rabies, pertussis, hepatitis and HPV, The only vaccine I dont recommend is flu.

            1. Harriet Hall says:

              @FastBuck Artist,
              What a confused mishmash of a comment! The reason prescription drugs are not available without a prescription is not “because they harm the patient.” Every effective drug can also have adverse effects, and the risk/benefit ratio should always be considered. Some drugs are available over-the-counter because regulatory authorities think the average consumer can make a responsible decision about them. Marijuana is teratogenic in animals, but there is still doubt about whether it can cause birth defects in humans; there have been studies showing it doesn’t. Big Pharma does not produce either medical marijuana or recreational drugs, and neither GlaxoSmithKline nor Bayer have benefited from the legalization of medical marijuana (if anything, I would guess it has reduced their sales of some prescription drugs). And it’s interesting that you are concerned about a possible risk of teratogenicity in pregnant women but don’t recommend flu vaccine, which has been definitely shown to be of particular benefit in pregnancy. You have presented no evidence that fetuses are “bombarded with a cocktail of prescription and recreational drugs.” On the contrary, I think most pregnant women follow the conventional medical advice to avoid any drugs during pregnancy unless they are medically necessary.

            2. MadisonMD says:

              The latest pharmaceutical fashion is “medical marijuana” which is now a billion dollar industry causing a basket of psychiatric disorders and is a teratogen.

              Huh? This is not promoted by any pharmaceutical company, nor regulated by the FDA*. In fact, I’ve tried to get my local Integrative Medicine specialist to take “cannabis” off his publicly posted list of treatments for chemotherapy-induced nausea– to no avail. Maybe you would like to contact him since you are more friendly to these Integrative Med dudes?

              Anyway, I agree with you that pregnant people should not smoke, take cannabis, or any unnecessary pharmaceutical.

              All drugs regulated by the FDA must have a pregnancy class based on data available so at least risks can be stratified. It is not advisable to avoid all drugs as, for example, pre-eclampsia and bacterial infections can be life threatening. So, whether or not a pregnant mother receives a drug needs to involve a careful balance of stratified risks/benefits on the part of the patient and the physician who prescribes the medicines, no?

              ——-
              *I’m only aware of drabinol which isn’t really a ‘new pharmaceutical fashion’ because it’s been around for >30 years and, as a de facto specialist in nausea (all oncologists are), I can tell you its not used for the simple reason that it is ineffective.

    3. Julian Frost says:

      @FastBuckArtist: I’m going to assume that you’re a Poe, especially with a name like that.
      The alternative is just to ghastly to contemplate.

    4. David Gorski says:

      Rather than admit the facts in front of him, Gorski dives into the racist argument that communities of white children have gotten better at diagnosing autism than communities of hispanic and black children! I dont even know why CDC bothered separating the children by race in their report. That just gave sinking autism deniers a racist straw to grasp onto.

      Wow. Straw man much? It has to do with socioeconomics and access to services, not whether communities have gotten better at diagnosing autism. Moreover, note that the difference in autism prevalence between Caucasian and non-Hispanic black children is not that large. Great strides have been made in making sure these children have better access to services, but Hispanics seem to lag.

      Not that FBA would understand or even want to understand.

    5. scribblingTiresias says:

      Hey, FBA-
      It’s actually the other way around. It’s not that white communities are “better” at diagnosing autistic children, it’s that non-white kids with autism are more likely to get marked as “troublemakers”. Because a lot of people are, sadly, still racist.

      I have a blog friend who’s autistic and black, and they write pretty regularly about this stuff. You’d be surprised just how much crap happens to autistic kids, period.

      Put another way, if I was black, and still myself in every other respect, I would probably have spent some time in juvi, just because of some of the things I did in grade school.

  23. lilady says:

    FBA’s entire argument is based on his mistaken belief/his misinterpreting the CDC study that the children were diagnosed under the DSM-5 Diagnostic Criteria…not the DSM IV-TR Diagnostic Criteria.

    Here, his first sentence:

    “This cannot be dismissed as change in definitions – in fact the latest changes to the definition of the disorder have been in the opposite direction – LESS inclusive than the previous set.”

    Dr. Gorski, I was going to let him hang with his ridiculous statement about the differences in the abilities of communities where white, black and Hispanic children reside, to diagnose ASDs

  24. PMoran says:

    “Now, thanks to a 21-gene assay, we can much more accurately separate the women with such tumors not likely to benefit from chemotherapy from those who are and treat each accordingly.”

    David, have you written on this on these pages? It seems to me to be a crucial advance. I have always felt that simplifying the treatment of breast cancer would do much to reduce bad treatment choices.

    If we could then select out those who are likely to be cured by a simple excision —- .

    1. David Gorski says:

      It’s called OncoType DX, and it’s been validated for ER(+)/HER2(-) node negative breast cancer. I’ve mentioned it before, but I don’t know that I’ve ever done a whole post on it. Another such test is the MammaPrint test. It’s used more in Europe, as far as I recall, and I’m less familiar with it.

  25. Politicalguineapig says:

    Fastbuckartist: in the roman empire if a young woman drank wine she was considered spoiled goods and unfit for marriage.

    I’m pretty sure that’s wrong. If I recall right, pretty much everyone in the Roman empire drank wine. Mostly because the water, even after installing the sewer lines, stank.

  26. Politicalguineapig says:

    *Checks* Okay, I was wrong. But it wasn’t for a medical reason, just to kick women out of the public sphere.

  27. Zoe says:

    Couple more thoughts…

    Pseudoscience generally fills in where medical science has gaps in understanding, just like religion offers creation stories and miracles. People feel a tremendous need for solutions and answers to questions. Thus, one of the best things we can do to dispel myths is try to discover the cause of autism and scientific research into cures. I do understand Dr. Jay’s and others obsession with anecdotes, and I myself seem to know so many kids right now with autism in my circle of friends. Speech problems too. Problem is, you can’t argue with people who believe their personal experience is proof because they aren’t coming from the same paradigm.

    Would love to see a post on medical marijuana covered by science based medicine.

    And, is that really dr. Jay or just someone who uses the screen name?

    1. Windriven says:

      “Would love to see a post on medical marijuana covered by science based medicine.”

      Me too. The country is awash with medical marijuana outlets. In my state of WA – before we simply legalized marijuana use – there were medical marijuana storefronts even in tiny semi-rural towns – and flyers posted to light poles with numbers to call for your very own medical MJ prescription.

      There seems to still be considerable controversy regarding the safety of the drug and about its medicinal utility. It would be interesting to hear Dr. Gorski’s take (as a surgical oncologist) or Dr. Novella’s – as a neurologist. But for sheer fun I’d like Dr. Crislip’s take – not that MJ has anything much to do with infectious diseases. It is just that there would be so many opportunities for the rhetorical leaps and twirls at which he excels.

      1. David Gorski says:

        I’ve had a post on medical marijuana percolating for many moons now, but something always seems to pop up to push it aside. Also, there’s the knowledge that my view on it won’t be…popular, which leads me to wanting to get it right buy being highly rigorous about the evidence that’s delayed it. Suffice to say, the evidence base is pretty shaky for most of the claims made by its advocates.

        1. Windriven says:

          “Also, there’s the knowledge that my view on it won’t be…popular”

          All the more reason. The weight of science rubbing fur the wrong way may actually get a few people to think.

          There are two questions in my mind: does medical marijuana have the positive effects attributed to it for pain and nausea management? Does recreational use have demonstrable negative health effects?

          1. Andrey Pavlov says:

            I have yet to see Sanjay Gupta’s report on it. From my understanding he had a rather hard-line stance against marijuana (both medically and recreationally) which substantially softened after he delved deeply into the evidence. A friend of mine has seen it and said he was impressed. The take away is that it is, of course, still a drug, still harmful for all the same reasons as inhaling any smoke (those mitigated by other means of consumption, natch) and that there are copious ridiculous myths that proponents like to tout, but that overall it is much less harmful than he had previously believed. As for medical efficacy, I honestly don’t know.

            This is also different to the “medical marijuana” in California which rapidly became just a minor inconvenience to get marijuana for recreational consumption. A fact that a friend of mine capitalized on to the tune of roughly $30M by developing a website called WeedMaps as his MBA thesis project and then ultimately selling.

            My understanding of the actual literature is superficial at best, but essentially that usage is indeed correlated strongly with higher risk of schizophrenia but that this risk decreases with age, peaking in the teens and dropping to baseline sometime in the early 20′s (and is almost certainly not a cause but a trigger in susceptible individuals); that it does uncommonly cause acute psychosis in both naive and experienced users; that it has all the expected harms and risks of smoke inhalation and general intoxication; that it is likely, though not robustly demonstrated, to have some intrinsic toxicities and neurocognitive changes (though to my knowledge these are neither profound nor enduring, though can last longer than the acute period of intoxication); that it is likely less harmful to health than chronic alcohol consumption and that the LD50 is so high as to be effectively impossible to die from overdose; that it does have salubrious effects on nausea and appetite for patient undergoing chemotherapy (though I don’t know how robust these data are or what the effect size is) as well as joint, bone, and muscle pain; that is has salubrious effects on the taste of food and enjoyment of music; and that Carl Sagan was a huge fan and Ann Druyan still is.

            So yes, I too would be interested in a solid science based analysis. I think that anyone who tries to say it is healthful, somehow “good” for you, that the smoke is not harmful and does not increase your risk for cancer at all, etc is deluded. But the real question is, how harmful is it and what legitimate medical uses are there, with what sort of effect size and applicability to actual patient care. I would aver that it certainly can be helpful in certain cases, that it is less harmful than alcohol, and that while likely more harmful per “unit” than tobacco, pragmatically consumed much less such that total harm from cigarettes is higher. My understanding is that it is also not addictive though, just like anything, can indeed be habit forming.

            I would love to have some real science to further inform my understanding and opinion.

            1. Windriven says:

              “that is has salubrious effects on the taste of food and enjoyment of music”

              Funny, I grew up during a period of widespread experimentation with drugs and personally indulged in some of that. But I settled early on alcohol*; Scotch at that time. Really good marijuana made me sleepy and the rest didn’t do much for me. But I recognize myself as an outlier. Very many of my friends blew through copious quantities of the stuff.

              *Do you know the difference between an alcoholic and a drunk? Alcoholics go to meetings. ;-)

              1. Andrey Pavlov says:

                Really good marijuana made me sleepy and the rest didn’t do much for me. But I recognize myself as an outlier. Very many of my friends blew through copious quantities of the stuff.

                Indeed. I have a friend whom my fiance lovingly refers to as “John the Mythical Pot Smoking Monster.” He is a great person, wickedly intelligent, and in around 8 years I have never, ever, not once ever seen him not stoned. Yet if I have a serious question on law or philosophy (he holds advanced degrees in one and is working on the other) he is my go-to. One of the few people I know IRL that makes me work hard in an intellectual conversation.

                In my previous experiences (we have family friends who live in the Netherlands and my first joint ever was in Maastricht) I tend to be in the same camp as you. I simply do not understand how John TMPSM functions whilst under the influence. During my undergrad days (well, and post grad days too) I was much more in line with you and enjoyed the salubrious effects of ethanol. I still do, but the problem is that I got old at some point and now get brutal hangovers. I once projectile vomited on a kookaburra that had the misfortune of being on a tree limb outside my balcony. That was the turning point for me and I realized that the costs of alcohol consumption included the next day. I can enjoy a glass or two of wine or a beer or some small amount of alcohol, but anything that takes me beyond the slightest buzz leads to appreciable hangover the next day.

                Not that cutting down overall consumption is a bad thing, mind you. But I miss the days when I never got a hangover, no matter how much I imbibed. Sadly, Scotch is almost entirely off the table for me because it gives me the worst hangovers with the least provocation. I still enjoy a glass from time to time, but it used to be my favorite hard liquor. Wine is fine, be beer is dear. Especially a really good IPA, with some extra hops to kick you in the mouth.

              2. Lytrigian says:

                I once projectile vomited on a kookaburra that had the misfortune of being on a tree limb outside my balcony. That was the turning point for me…

                I’m guessing it was also a significant event in the life of the kookaburra.

            2. MadisonMD says:

              that it does have salubrious effects on nausea and appetite for patient undergoing chemotherapy (though I don’t know how robust these data are or what the effect size is)

              I call bullsh*t. Show some evidence that it works, Andrey. You are perpetuating another myth that won’t die.

              1. Andrey Pavlov says:

                @MadisonMD:

                I am not perpetuating anything. I clearly stated that my understanding is incomplete and superficial and merely outlined what my understanding was. I even clearly stated in the quote you provided that I do not know how robust the data actually are, nor the effect sizes.

                I actually no longer have institutional access (I am in limbo between institutions at the moment) so I don’t have full access to the articles, but a quick lit review shows that there are data to support that fact that cannabis is effective in nausea and specifically CINV. There is animal data, human data, molecular data, and I found one systematic review. Since I don’t have access to the full articles (nor do I have the time at this moment to dissect them carefully) I still say that I do not know how robust the data are nor what the effect size is. Most say it is better than placebo, some say equivalent to standard anti-emetics, and some worse than standard. This is confounded by different cannabinoid compounds used.

                But I don’t think that my statement was out of line with the evidence, particularly since I clearly stated my limitations in knowing the details of the evidence.

                A 2001 study which was small and pilot at best showed improvement with induced nausea (via ipecac), but less than ondansetron.

                A 2002 rat study on both induced and conditioned nausea showing benefit of non-psychoactive cannabinoids.

                A 2001 rat study on anticipatory nausea showing benefit.

                A 1997 paper indicating that derivatives of marijuana may be useful but that crude marijuana may carry more risk and thus not be viable.

                And a 2009 systematic review indicating nausea control better than placebo and possibly comparable to prochlorperazine and ondansteron.

                Once again, the data seem thin to me. I can’t evaluate the quality of the data I provided, and I only spent about 10 minutes doing a quick review. I could be completely wrong. There may be a paucity of data to actually answer the question.

                But I don’t think that it can be said there is zero evidence that it works, nor a low prior probability that it would work (of note is that some people suffer from a hyperemesis syndrome caused by cannabis use, which could mean it has some effect modulating the CTZ or other aspects of nausea induction). I do not think it is fair to call it a myth, unless you have evidence that it really doesn’t work. Otherwise it would be at best something with thin evidence that could work or at worst not tested well enough to say one way or another.

            3. MadisonMD says:

              I have yet to see Sanjay Gupta’s report on it. From my understanding he had a rather hard-line stance against marijuana (both medically and recreationally) which substantially softened after he delved deeply into the evidence. A friend of mine has seen it and said he was impressed.

              OK, Andrey, you are spurring me to rethink. I looked up Gupta’s blog entry Why I changed my mind on weed

              The (sort-of) good: he provides some fairly decent evidence that cannabis may be useful for AIDS-neuropathy (authored by a guy who promotes a lot of quackery, yet can’t dismiss for this reason alone). Also he provides what seems a fairly compelling anecdote of a woman who had seizures quelled by cannabis (yet the details are strange since he compares current seizure rate of 2-3 per month with her 3-year old seizure rate of 300/week; not really a sensible before-after comparison, unless we are to believe she started cannabis at age 4?).

              The bad:
              His arguments are otherwise not based on efficacy, but instead about about cannabis not being harmful, being less addictive than tobacco, about US policy being misguided, about the failures of standard pharmaceuticals. The worst argument is perhaps this:

              Most frightening to me is that someone dies in the United States every 19 minutes from a prescription drug overdose, mostly accidental. Every 19 minutes. It is a horrifying statistic. As much as I searched, I could not find a documented case of death from marijuana overdose.

              The same could be said about homeopathy. Not very good evidence for efficacy.

              I look forward to Dr. Gorski’s analysis.

              1. Andrey Pavlov says:

                @Madison:

                Interesting. I hadn’t read that before. I agree with you about some of the way he gushes in it. However, I think he also makes valid points about the state of the research and why it is in that state. No, that doesn’t prove efficacy. But it does seem plausible.

                I think it seems quite reasonable for more rigorous pharmacognosy. I’d much rather prescribe more effective and less risky purified derivates. Particularly the non-psychoactive cannabidiols.

                As for the girl… the more complete story is is here and they did indeed start giving her cannabis oil at around 4 years old. They specifically sought out a strain that had a low THC and high CBD content to minimize the psychoactive effects. Apparently it seemed to work.

                As for “the bad” – yeah, I agree. That does not imply any sort of efficacy whatsoever. It is, however, good to note that it is reasonably safe. And as I said above, I think it is fair to say that policy has been at least partly responsible for the paucity of evidence. And that it seems silly for marijuana to be Schedule 1 whilst cocaine is Schedule 2. When’s the last time you prescribed cocaine? LOL. The ER I worked at for 3 years actually had it in the Pyxis but I never once saw or heard of it used.

                But it seems that the majority of his softening was not in recognizing good evidence for efficacy, but in recognizing it is safer than he’d thought and advocating for more research. Not unreasonable, but perhaps not on-message enough.

                (Though I fully agree that his rant about prescription drugs killing people was inane)

          2. Harriet Hall says:

            @windriven,

            I tried to research those questions and gave up because I despaired of finding unbiased evidence. Pain and nausea are particularly responsive to placebo and other subjective factors, and the recreational pleasures of marijuana are confounders that are impossible to eliminate. If people enjoy the “high,” that will inevitably influence their reports of pain and nausea.

            1. Windriven says:

              I’ve guessed as much. So then it comes down to safety – at least in my mind. If marijuana is generally safe and it makes, for instance, chemo patients feel better – even if it is only an illusion – I’m OK with it.

              1. Andrey Pavlov says:

                I agree windriven, as per my longer response to Dr. Hall.

            2. Andrey Pavlov says:

              An interesting point Dr. Hall. It is akin to the idea that opioids do not necessarily decrease pain sensation as much as they simply make you not care about the pain you are experiencing.

              The question is – does that really matter? Obviously academically we would be interested in sussing out the difference, put in terms of application in a therapeutic context I don’t know that it does.

              The same would go for marijuana in the context of N/V. We could look for objective measures (how many episodes of emesis) but once again, that could be confounded similarly to just not caring about your pain. Ultimately though, if it could be demonstrated that patients tolerate their nausea better (to avoid saying it actually diminishes nausea) and can keep down more calories as a result, that seems reason enough. Comparing it to standard anti-emetics (like ondansetron) would be interesting, but I think not necessarily particularly relevant. Cannabis is not only (supposedly) an anti-emetic but also an appetite stimulant (and that is robustly demonstrated, to my knowledge). In the limited clinical practice I have seen we don’t really have good appetite stimulant drugs (I’ve prescribed cyproheptadine but I think the evidence is thin at best). In a patient amenable to the idea (even if that is because they enjoy the high) it seems reasonable to use cannabis instead of ondansetron and cyproheptadine. In patients culturally averse to it, the difference is obvious.

              As it stands, from what I do know, given the opportunity I would be willing to prescribe or suggest cannabis to a cancer patient undergoing chemotherapy. Almost certainly not as a first line treatment, but also not as something I would feel forced to do as a last ditch effort.

              Of course, I am also of the belief that the safety profile is good which could be mistaken. And as a future pulmonologist I would recommend other means of ingestion besides smoking, but for short term use during chemo I don’t think it is the end of the world.

              And yes, I’d like to differentiate that sort of use from what is common in California to prescribe it for just about any condition under the sun. You can actually walk into a “clinic” and be given a paper with all the indications for a marijuana prescription, check a box, pay $200, and walk next door (literally) to get it filled, all in 15 minutes. It is a farce to enable recreational use. Not that I am opposed to decriminalization and responsible recreational use in well informed adults (just like alcohol), but that is a separate conversation.

              1. MadisonMD says:

                The question is – does that really matter? … The same would go for marijuana in the context of N/V.

                Hall is saying marijuana may operate as a placebo. If so, it is no different than acupuncture for N/V.

                As it stands, from what I do know, given the opportunity I would be willing to prescribe or suggest cannabis to a cancer patient undergoing chemotherapy.

                Oy, vey. Wow. Wouldn’t you like some evidence first? Do you think there is a reason why oncologists today don’t prescribe THC or cannabis? Maybe some very old studies like this and this? These cannaboids were inferior to the crappy antiemetics available in the late 1970′s. There are much better anti-emetics available today and frankly most people who are not marijuana users prefer to not be high all day.

              2. Harriet Hall says:

                I didn’t exactly mean it was a placebo effect. I was thinking more of the pleasurable effects overriding the pain-related considerations. Sort of “Iwant the high whether or not my pain or nausea is lessened.”

              3. Andrey Pavlov says:

                Hall is saying marijuana may operate as a placebo. If so, it is no different than acupuncture for N/V.

                I disagree. As per the idea of opioids. Unless you’d like to posit that opioids also work via placebo? She also made it clear that the question wasn’t answered, not that it was certainly a placebo. And yes, it would be different to acupuncture based on the mechanism. Acupuncture would do nothing but allow you to delude yourself into thinking it had done something when, in fact, it actually does nothing itself. I doubt you’d argue that cannabis has no intrinsic effect. That intrinsic effect may not be to directly affect nausea but the ancillary psychoactive effects are still there independent of whether you believe in cannabis or not.

                Or, put another way, acupuncture no longer does anything for me because I no longer believe it has any effect. You could choose to believe marijuana has no effects, but it still will. This is fundamentally different.

                It seems you have a particular issue with cannabis. You may actually be right, but so far you’ve presented no evidence to actually demonstrate that. Only evidence that it isn’t very good, rather than it doesn’t work or do anything. A far cry from comparing it to acupuncture.

                Do you think there is a reason why oncologists today don’t prescribe THC or cannabis?

                I have a comment with references in moderation, but one of the references I did not include was this discussion from 2012 about the legal issues and therapeutic uncertanties as being reasons for oncologists not prescribing or recommending it. I did also find much older studies (early 90′s) surveying oncologists showing that they did in fact prescribe it, but not very often (one study commented that it was 9th line for mild/mod and 6th for severe N/V).

                Undoubtedly the paucity of evidence, the lack of standardization, and the psychoactive effects are perfectly good reasons to not recommend or use it very often. But it would be naive to think that cultural stigma and legal issues don’t play into it as well.

                As I clearly stated, I would not recommend it first line nor to all patients. But I (still) don’t feel it is utterly worthless, placebo, or reserved only for the most dire of last ditch efforts.

                Maybe some very old studies like this and this? These cannaboids were inferior to the crappy antiemetics available in the late 1970′s.

                I haven’t read the full studies, so it may be spin, but the abstracts indicate that they were just as effective as those anti-emetics. In my other response there is other data which seems to indicate that they are as effective as modern AE’s (ondansetron specifically).

                There are much better anti-emetics available today

                Indeed. Which is why I would undoubtedly recommend them first and second and probably third line. But cannabis is not only an AE but an appetite stimulant as I discussed in my other comment as well. I would think there is benefit to that combined effect in certain patients.

                frankly most people who are not marijuana users prefer to not be high all day

                No doubt. Something I also touched on in my other comment. Obviously there would be people who – for myriad reasons – would find smoked cannabis to be objectionable. For those that don’t, I don’t see a compelling argument here.

                It is also an argument for better derivatives, as not all cannabinoids have psychoactive properties. One of the studies I linked in my other comment discusses the AE effects of one such compound and finds it at least somewhat effective.

                I am not saying I am certain on these topics – I never have and made that clear from the beginning. I am very open to being proven wrong. I also recognize that in most forms cannabis would not be a suitable therapeutic for many – perhaps most – patients. But you have yet to show me there is no evidence for its efficacy – just that it might not be particularly effective and that it carries additional unwanted side effects.

                If it has some efficacy (which the literature indicates), an additional effect of appetite stimulation, and I have a patient undergoing chemotherapy who is losing weight because she can’t eat from nausea and has diminished appetite even when ondansetron controls it, who is amenable to it, I don’t see why it is as egregious an idea as you seem to make it out the be. If it fits in with the patient’s lifestyle and helps her feel better, eat more, and gain weight (all fundamentally different to a pure placebo and unlike acupuncture) I don’t see the issue. Unless the complaint is some moralistic one that the patient shouldn’t enjoy the high as well, which I disagree with.

                But I also think it is unfair to try and equate it with acupuncture I recognize the social and legal issues as imparting a potentially unfair negative bias.

              4. brewandferment says:

                Hey Andrey, regarding your other comment re John TMPSM: I once worked with a guy that I called “Tigger” because he really bounced around and acted like a human version of Tigger. We were drinking once at a port call and he still acted like Tigger and I asked him about it and he said that if he acted like that all the time, you couldn’t tell whether he was drunk or sober as easily. Wonder if any of that is the case with your friend? or does it just constantly metabolize out of his fat cells? ;->

              5. Andrey Pavlov says:

                @brewandferment:

                That is certainly an interesting fellow!

                However, with my friend, I am pretty certain it is neither scenario you present. Primarily because I have never spent more than an hour with him without him partaking. Now, when he works he usually does not, but obviously I don’t see him at those times. I have, on occasion, seen him very shortly after returning from work, but usually the first thing he does as he walks through the door is partake. So I suppose I could technically have seen him not under the influence, but it would have been for minutes only. He is an admittedly daily user, though he doesn’t smoke so much these days. When I see him I am always amazed at the new ways of ingesting cannabis that are thought up. I invariably have to ask him to explain to me what the heck it is he is using and how it works. The physics and chemistry involved is typically very clever.

                A mutual friend and I have occasionally wondered if he truly functions better under the influence, if he is merely acclimated and at “baseline,” or if cannabis is the only thing preventing him from taking over the world. We’ve advised him that it is unhealthful, and suggested he cuts back. At least we’ve gotten him to stop smoking it as much and use other methods less harmful to the lungs. But he is a grown man and fully understands the risks (as best as anyone can). It is his (informed) decision to make.

              6. MadisonMD says:

                But you have yet to show me there is no evidence for its efficacy – just that it might not be particularly effective and that it carries additional unwanted side effects.

                Yes, I should not say that THC is placebo. I showed you evidence that synthetic THC analog has effectiveness similar to low-dose metoclopramide (which is not a very good antiemetic). The THC had worse side effects. So I shouldn’t call it ineffective…. just rather crappy due to small benefit and large side effects (at least if you don’t like being high).

                I have a comment with references in moderation, but one of the references I did not include was this discussion from 2012 about the legal issues and therapeutic uncertanties as being reasons for oncologists not prescribing or recommending it. I did also find much older studies (early 90′s) surveying oncologists showing that they did in fact prescribe it, but not very often (one study commented that it was 9th line for mild/mod and 6th for severe N/V).

                You cite a review from an single RN in private practice, in a small journal and then cite surveys of oncologists from 20 years ago, when 5HT3 and NK1 antagonists weren’t available and it was 6-9th line then? So this isn’t really strong evidence of efficacy.

                How about the ASCO antiemetic guidelines which doesn’t even bother to mention THC agonists, given given availability of 5HT3 antagonists, NK1 antagonists, and dexamethasone.

                I have no problem with marijuana if that’s what someone likes to use. It probably has less harm than other recreational drugs. But I’m tired of hearing about how great it is for chemotherapy-induced nausea, when the literature, ASCO guidelines, and clinical practice experience all show it basically sucks. It’s the kind of crappy practice the local Integrative Med docs like to foist on patients who can easily avoid chemotherapy-induced nausea with effective medications. It does a disservice when someone tries to use it as a natural alternative to effective medications. And that’s why I’m annoyed by it.

                If it has some efficacy (which the literature indicates), an additional effect of appetite stimulation, and I have a patient undergoing chemotherapy who is losing weight because she can’t eat from nausea and has diminished appetite even when ondansetron controls it.

                Times have changed. Cancer cachexia is generally from disease, not from chemotherapy*. It is common for patients receiving adjuvant chemotherapy to gain weight.

                *exception chemo-radiation for head/neck or esophogeal cancer, but that is more from inability to swallow than chemotherapy-induced nausea.

              7. Andrey Pavlov says:

                @Madison:

                That seems much more reasonable to me. As I said – I really don’t know the literature very well. And yes, I should have been more clear that were I to actually contemplate recommending it, I would do a much more thorough lit review. The one I did was – once again, as I said – pretty minimal.

                I get that you are annoyed with it – and I can actually understand and appreciate it. I get similarly annoyed when pot-heads try to say it should be legalized because it is actually good for you, like it is some magic herb of life. I feel like there are plenty of reasons to argue for the legalization of it without bringing in stupid arguments like that.

                I was certainly leaning more towards the positive bias of it, no doubt. But the literature does seem to support that it works, and I clearly stated that I did not know how robust that literature is nor how big the effect size was. I admit… overzealousness, if you will, when I said I would be likely to recommend or prescribe it given the appropriate circumstance. I still think that is reasonable, but what I would consider the appropriate circumstance is less common than I previously would have thought. All this, mind you, because I’ve learned to value your thoughts and reasons rather than having done the requisite reading myself. If your take is that it really is crappy as an AE then that means something to me. I was just surprised at how vigorously you made it seem like it was complete crap and a pure placebo.

                In any event, I am genuinely curious as to what Dr. Gorski will say on the matter in his post. I still have no issue with any person, let alone a cancer patient, using it recreationally, medicinally, or some combination thereof. But I would like to know the actual data. And of course you should know by now that I take no stock in the idea that it is somehow a “natural” AE and thus must be better than zofran. It is a drug and an impure one at that, no doubt. I would certainly never recommend it in lieu of a tried and true AE. And to be clear, I never thought it would be as effective overall as a modern AE. Merely a reasonable option in certain cases with certain patients.

                Times have changed. Cancer cachexia is generally from disease, not from chemotherapy

                Interesting. I’ll admit that I did not know this (that it is now the disease rather than the chemo causing the cachexia). As I recall my med school lectures and the reading I did on the topic (not in depth, mind you) still made it seem like the CINV was the main, or at least large, component. In retrospect, perhaps I mistook the point and that CINV was the modifiable aspect of cachexia rather than a large or main cause of it.

          3. David Gorski says:

            All the more reason. The weight of science rubbing fur the wrong way may actually get a few people to think.

            Obviously, I don’t shy away from writing unpopular opinions. Indeed, over at my not-so-super-secret other blog, I’ve done a couple of doozies over the last month or so that managed to tick off some skeptics and fans of a prominent physician-blogger. Moreover, my position has been for some time that I don’t see why pot shouldn’t be legal for adults. It’s the medical claims that tend to be highly dubious, both positive and negative.

            Alright. I can’t do it this Monday because I’ll be in San Diego for the AACR meeting and won’t have time to make sure it’s bulletproof, but I clearly have to get this post done soon after I get back.

      2. Zoe says:

        There was one from 2009… Just not too up to date.

      3. Zoe says:

        Part of the problem, iirc, is that marijuana is classified as a “schedule I” drug so it has not been studied extensively in controlled trials. My guess, as a layperson, would be that there just isn’t sufficient evidence yet to form a solid conclusion. Scientific American, CNN (Sanjay Gupta is a strong proponent), and NYT science blogs have covered the issue, but I would love to see Dr. Gorski’s take as well. Seems like in my state of Michigan there are a lot of prescribing doctors these days though, and I wonder if there is informed consent.

    2. Sawyer says:

      Jay Gordon has left comments here before, so I’d put money on it really being him.

      1. Chris says:

        I fondly remember when he got stuck on an escalator when the power went out.

        1. lilady says:

          Maybe Dr. Jay is stuck on an elevator now, Chris.

          It looks as though Dr. Jay really stepped in it this time and doesn’t know how to extricate himself.

          He could send another letter to the parents to urge them to get their children vaccinated against measles. Somehow, I think that will never happen.

          1. Chris Hickie says:

            Jay’s dumb enough to get stuck on an escalator.

      2. David Gorski says:

        It’s Dr. Jay. He hasn’t been around in a while, but it appears to be him.

  28. Laurenak says:

    As a speech language pathologist I work with children everyday with ASD. Warning, this is purely anecdotal but I tend to agree that this ‘increase in Austism’ is really due to the broadening of criteria and increased understanding of ASD. I have several clients with high functioning ASD that probably wouldn’t have gotten diagnosed in the past as they present at first as chatty bright children but they have great difficulty with social communication such as taking turns in conversation and reading body language. We have been celebrating Autism Awareness Day at my clinic this week (I’m dressed in blue as I type) and it’s sad to see that this opportunity of reducing the stigma of ASD and educating the public being manipulated by anti vaccine groups to push their agenda.
    Thank you for this great article Dr. Gorski.

  29. Scubadoc says:

    To change the subject slightly. It was refreshing to see in the latest Time magazine, in the Health & Science section, a small article entitled “Rise of the Mumps”. In it, Alexandra Sifferlin supports the use of vaccines, and decries ‘the ongoing antivaccine noise made by celebrities like Jenny McCarthy who erroneously link vaccines to autism’.

  30. Dangerous Bacon says:

    Jay: “David, just as there are certain things that you know from your extensive experience as a surgeon, there are things I know from my experience as a pediatrician.”

    I have yet to see Dr. Gorski make illogical and poorly thought-out claims based on his “experience” that fly in the face of evidence-based medicine.

    That’s Jay’s specialty. Maybe there should be an alternative medical board to certify such practitioners – for instance, the College of Experienced But Clueless Pediatricians.*

    *this would allow Jay to sign off on all his online missives as Jay Gordon M.D., F.A.A.P and C.E.B.C.P.

  31. Anon says:

    Not sure this will help any with the marijuana discussion but here’s the FDA sheet on medical THC, aka dronabinol.

    http://www.drugs.com/pro/marinol.html

    One case isn’t much to go by but I’ve seen it assist a cancer/chemo patient in later stages.

  32. vince says:

    isnt it possible that vaccine coverage was higher a few years ago before the anti vaccine movement got going? If so then we have a “paradox” here. higher autism prevalence with lower vaccine coerage

  33. Jon Brewer says:

    While we’re talking about autism, I want to mention, what’s really dreadful about April is, first, let’s consider the groups typically profiled in the MSM. Autism Speaks (which is busy trying to find which fencepost fits their anus best on the vaccine non-issue, weaseling, neither hot nor cold but rather lukewarm) has videos of parents telling us point-blank that they wanted to murder their children for being autistic. NAA uses an ‘autism diet’ (which is exactly as insane as it sounds), specifically your choice of a gluten-free, casein-free diet (not necessarily deficient I suppose) or a special carbohydrate diet (lolwut, and most likely deficient in one way or another).

    And that’s before you consider the woo about supposed linkage of vaccines and autism. NAA links to NVIC, which claims shaken baby syndrome is actually an adverse reaction to vaccines. (Apparently there’s no problem with giving babies traumatic brain injuries?)

  34. JD says:

    Long time fan of SBM and Dr. Crislip’s fine work over at Rubor, Dolor, Color, Tumor.

    Just a general question, what do you see as the best way out of this horrendous situation we now find ourselves in? I understand that it is always the most ignorant who yell the loudest (especially in comment sections, it seems), but I can’t help but feel disheartened every single time I visit the comments on any article pertaining to vaccines, Lyme Disease, supplements etc. I get the impression that the number of Americans who wholeheartedly believe this nonsense, which you so eloquently rebut, has grown substantially.

    I view the most likely scenario for our collective future as somewhere between two seemingly ridiculous extremes:

    1) Someone with true medical or political authority buys into this nonsense and we enter a world where outbreaks of preventable illnesses are rampant, we have a “pro-vaccine” movement that rails against the majority and “Big Supplement”, children are secretly taken to underground clinics where vaccines are distributed against guidelines, and all evidence-based decisions in medicine stem from publications in the Journal of the American Naturopathic Association and the New England Journal of Naturopathic Medicine.

    2) We squash this quickly by assembling a kind of scientific literacy goon squad that runs around and enforces penalties against all woo practitioners. No discrimination, naive providers who have been sucked into this madness and charlatans alike serve time for administering treatments that have not met the basic tenets of evidence-based medicine or making dangerous recommendations.

    Obviously, in reality, I hope that we can do a better job of reclaiming the trust of patients who have been failed by the system and creating a science-literate population. But, I know which of these two extremes I would rather see come to fruition in a worst-case scenario.

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