Respectful Insolence

I don’t always blog about stories or studies that interest me right away. Part of the reason is something I’ve learned over the last eight years of blogging, namely that, while it’s great to be the firstest with the mostest, I’d rather be the blogger with the mostest than the firstest. I’ve learned this from occasionally painful experience, although I’d be lying if I didn’t admit that in part this is a rationalization for the fact that I have a demanding day job that keeps me from jumping all over stories and studies of interest in the way that some bloggers can. There’s also the simple fact that blogging is a global phenomenon, and even if blogging were my full time activity there would always be bloggers in time zones many hours ahead of me who can pounce all over science and skepticism stories that I want to pontificate about. (I’m talking about mainly you, U.K. bloggers. Damn you for being awake while I’m snoozing the night away.)

It’s also sometimes good to let a story percolate a day or two, anyway. It can let me put it into context and, just as importantly for purposes of entertainment value, survey the reaction of the quacks, cranks, and pseudoscientists when appropriate, not to mention give me time to look up the actual study. So it was that I didn’t leap all over the stories that began peppering the media yesterday about how the prevalence of autism is now estimated to be 1 in 50 among U.S. children between the ages of 6 and 17, as reported by the AP and elsewhere. Not surprisingly, the antivaccine cranks at the antivaccine propaganda blog Age of Autism are all over it, with Anne Dachel laying down her usual burning stupid, while others demand that Thomas Insel be fired and Teresa Conrick engages in her usual scientific incompetence born of the arrogance of ignorance and tries to link various observations in science by trying to link the recent report that 1 in 3 adults will die with dementia with the report that 1 in 50 children have autism or autism spectrum disorder. (Yes, vaccine are to blame for both, in adults the influenza vaccine and in children childhood vaccines.)

To understand the importance of the issue of the prevalence of autism and autism spectrum disorders (ASDs) to the antivaccine movement (as opposed to the rational, science- and reality-based community), you have to understand the central dogma of the antivaccine movement. That dogma is that the reason for the massive increase in autism prevalence over the last two or three decades must be something in the environment. Of course, antivaccine cranks being antivaccine cranks, to them there is only one thing that could be causing it, and that’s vaccines. The reason is that the beginning of the increase in autism prevalence just happened to correlate with an expansion of the vaccine schedule. In a massive case of confusing correlation with causation, antivaccine activists, against all existing reliable scientific evidence from well-designed epidemiological studies, insisted (and continue to insist against that evidence) that it must be vaccines that are causing or contributing to what they like to refer to as the “autism epidemic” or, when they’re in a cruder mood, the “autism tsunami.”

The retort to such an obvious logical and scientific fallacy is to point out other things whose rise corresponds to the increase in autism diagnoses. One example I like to use is Internet use. It exploded beginning in the early 1990s and continues to rise today. Then there’s the example of the humble CD. Introduced in 1985 in the U.S., its use skyrocketed for 20 years, although admittedly CD sales are plummeting now as CDs are being supplanted by downloaded MP3 files, as CDs supplanted LPs; so maybe that’s not the best example anymore. However, perhaps the best correlation I’ve found thus far is between organic food sales and autism. Obviously, organic food must cause autism!

In any case, the heart of the antivaccine religion is the dogma that autism prevalence is rising and that the rise is caused by vaccines. Never mind that there are many other factors that cast doubt on the idea that the true prevalence of autism is actually rising, including diagnostic substitution, increased awareness, increased screening, and increased services. The example that I like to use to illustrate this point is worth bringing up again. There is a form of breast cancer known as ductal carcinoma in situ (DCIS). Well, actually, whether it’s really cancer or not is debatable, but it is clearly a precursor to cancer, although the percentage of DCIS lesions that progress to cancer isn’t precisely known. Be that as it may, before 1975 DCIS was a very uncommon diagnosis. Now it is very common, its incident has risen by 16-fold. No one believes that the actual incidence of DCIS has risen by that much. In fact, it’s unlikely that it’s actually risen much at all, but we are detecting much more of it because of the advent of mammography screening programs in the late 1970s and early 1980s. Yes, I know I’m mixing incidence and prevalence, but the example still illustrates a general principle that if you look for a disease or condition intensively, you will always find more of it, often a lot more of it. Always. And if the principle works for something that is diagnosed by an objective test, namely a biopsy, how much more so is it for a condition that has no unequivocal biochemical or tissue test to nail down the diagnosis, like autism, particularly for something whose diagnostic criteria changed considerably 20 years ago to widen the diagnostic criteria?

I hope that puts this report into context. Yes, the apparent prevalence of autism has been reported to be 1 in 50, which is in line with a South Korean study that found it to be 1 in 38. At this point, it is useful to bring up another principle. If you screen intensively for a condition, after an initial rise in incidence and prevalence, you will eventually see a leveling off at something near the “true prevalence” of the condition, and this is what could well be happening. After all, contrary to the ridiculous claim of Julian Whitaker, autism prevalence can’t keep increasing forever until it reaches 100%. It could be that the baseline prevalence of autism and ASDs is somewhere around 1 in 50. Only time will tell whether this is true or not, but it seems reasonable based on what we know now.

So what about the report? Basically, the authors mined newly released data from the 2011–2012 National Survey of Children’s Health (NSCH). This is a telephone survey of 95,677 families. One problem with the study, as has been noted in multiple news stories, is that the response rate was low (23%). While the authors describe going to great lengths to determine whether this biased the results through a phenomenon known as nonresponse bias, I must admit that I’m not entirely convinced. It’s quite possible that parents with children with ASD would be more interested in responding to this survey than parents with neurotypical children. On the other hand, this is not a survey about autism; it’s designed to look many health conditions.

If we accept the reliability of the survey instrument and the authors’ methods, the conclusion of this study was that autism prevalence has increased from 1.16% (1 in 86) in the 2007-2008 survey to 2% in the 2011-2012 survey in children aged 6 to 17. The authors noted that this increase in prevalence was observed across all of the age ranges studied. Moreover, they noted that much of the increase in prevalence was driven by diagnoses made post-2008 of milder cases of ASD, indicating a trend towards less severe presentations since 2008. Also noted, probably not surprisingly, is that the greatest increases occurred in boys, for which prevalence nearly doubled (2007 prevalence: 1.8%; 2011-2012 prevalence: 3.23%) while in girls the increase was less dramatic (2007 prevalence: 0.49%; 2011-2012 prevalence: 0.70%). All of this, the further increase in prevalence coupled with the shift towards less severe presentations, is reminiscent of the story of DCIS and suggests to me, more than anything else, a probable screening effect responsible for the increase rather than a true increased prevalence. Or, as described in the AP story:

“I don’t see any evidence that there’s a true increase in the prevalence of autism,” said Roy Richard Grinker, a professor of anthropology at George Washington University, Washington, D.C.

Grinker said he’s been anticipating a higher count in the United States since he published a 2011 study that found an autism rate of 1 in 38 in South Korean children. “I don’t look at that and say ‘that’s so much higher than the U.S.’ I look at that as ‘the U.S. will catch up.'”

The new study found the biggest jump among older children with milder symptoms, suggesting that their autism wasn’t caught until later in childhood. By definition, symptoms of autism must be present by age 3, affect a child’s communication and social skills, and lead to restricted or repetitive behaviors such as rocking or hand-flapping.

Michael Rosanoff, associate director of research for the advocacy group Autism Speaks, said he thinks the new numbers reflect improved awareness of the condition over the past decade, leading to more diagnoses. Because these children weren’t counted in earlier studies looking at school district support, it also suggests that many children who need help with their symptoms aren’t getting it, Rosanoff said.

It is the children with milder symptoms who are most likely to be affected by a change in the definition of autism that will take place this spring. Rosanoff said this study adds urgency to the need to protect those children.

While the AP quotes actual experts, one can’t help but note the marked contrast with the antivaccine crank blog Age of Autism, which cites not experts but one of the “Thinking Moms” Alison MacNeil, who is the coauthor of a an upcoming book The Thinking Moms’ Revolution: Autism Beyond The Spectrum. MacNeil, not surprisingly is bristling with the arrogance of ignorance. Responding to the CDC’s assessment that the reason for the increase is better diagnosis and screening, MacNeil is having none of it:

I don’t think the public is buying that anymore. They might have a while back, especially when the criteria shifted in the Diagnostic and Statistical Manual, but I think now, what we’re seeing everywhere we go, we’re seeing autistic children.”

“Why do we have so many children descending into autism? What is going on? One in every 50 children is losing the ability to speak, becoming incredibly sick, detaching. There’s something behind this.

Gee, I wonder what MacNeil is referring to when she says there’s “something” behind this. Could it be…Satan vaccines?

Then there’s the AoA crew demanding Thomas Insel’s head because he doesn’t accept their belief that vaccines cause autism. True, it’s in antivaccine code. To understand the code, you have to realize that whenever an antivaccinationist says “take the autism epidemic seriously and do something” they mean to start believing that vaccines and dubious environmental causes must be the cause of the “autism epidemic.” Anything short of that, particularly accepting the science showing that there is no detectable epidemiological link between vaccines or mercury in vaccines and an increased risk of autism, is heresy.

Meanwhile Teresa Conrick does what she does best and demonstrates her ability to make irrelevant connections between conditions that do not share pathophysiology, obtained mainly by cherry picking studies. In this case, she tries to liken Alzheimer’s disease to autism:

Coincidentally, about 30-40 percent (one out of three) adults receives an influenza vaccine. Is that a coincidence or is it a clue? Since both Autism and Alzheimers are each frequently quoted as being ” A MYSTERY,” is there a pattern to their well kept secrets? Alarmingly, there is much evidence that mercury, and Thimerosal, the kind of mercury in most flu shots, can cause immune and autoimmune issues . Is there a connection to immune issues and Alzheimers? We know Autism has numerous connections to the immune system, with many children and young adults also receiving an autoimmune diagnosis.

Because autism is just like Alzheimer’s and, of course, the evil vaccines cause them both! That reminds me. Perhaps I should take on a previous post of hers to which she links as “evidence” fot the connection. It’s a perfect example of how not to make inferences based on the scientific literature.

In the meantime, I can’t resist concluding with a little tweak to an old “friend” of mine. Two weeks ago, I gave a talk at the National Capital Area Skeptics (NCAS). The talk went well (at least as far as I can tell), and a good time was had by all, including, of course, myself. Some of you were even there, and I thank you for coming! Even though the talk wasn’t about vaccines, that didn’t stop our old buddy Jake Crosby from doing what Jake does and showing up at my talk, no doubt to try to goad me into saying or doing something embarrassing or, failing that, to get himself ejected and then paint himself as some sort of free speech martyr exposing the evil pharma conspiracy. I spotted him right away, lurking in the back of the room. At the end of the talk, not surprisingly he had to ask a question, and his question was apparently based on a post of his from a couple of months ago that I completely missed in which he tried to paint me as a liar because several years ago I said I’d reconsider my rejection of the hypothesis that the mercury containing thimerosal preservative in vaccines causes autism if autism prevalence started plummeting. That was back in the early years after the removal of thimerosal from childhood vaccines, and I proposed this:

I propose as quite a reasonable measure that, if autism rates fall by 50% or more in 2010 or even 2015, I will happily admit that I was incorrect in my assessment and rejoice that such a blow has been struck against this condition. If rates fall by less than 50% but still inarguably statistically significant, I will concede that this would be pretty good epidemiological evidence that there might be a connection, although in that case the connecton would clearly not be nearly as strong as the link claimed by some activists, like J.B. Handley, founder of Generation Rescue, whose website states quite bluntly that “childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning

In retrospect, I think I was way too generous, but there it is. Now, Jake seems to think that I am a liar because he found numbers showing a 40% decline in ASDs among African-American children in Alabama that is almost certainly due to problems in case ascertainment rather than a true decrease. Based on that, he thought I should retract what I said nearly eight years ago. I, of course, do not. Indeed, I repeatedly asked Jake what’s happening to autism prevalence everywhere else, which produced the amusing spectacle of him trying (and failing) to handwave and Gish gallup. I also note that a month before my talk, Jake’s fellow AoA blogger Anne Dachel lamenting that Autism is overwhelming Alabama.

Then this study shows up, suggesting that autism/ASD prevalence is still going up 11 or 12 years after thimerosal was removed from childhood vaccines and may be as high as 1 in 50. I am amused. Too bad this study wasn’t reported two weeks ago. It would have been so much fun to rub Jake’s face in it publicly. I’ll just have to settle for doing so now.

I know it might have been excessively snarky given the circumstances, but later on while trying to question me more after my talk, Jake asked me if I knew who he was. My response was along the lines of, “Of course, I know who you are. That’s how I know you don’t know what you’re talking about.” His only response to that was to tell me I was lying, after which I was done with him. The same can be said of all the antivaccinationists trying to use the increasing prevalence of autism as evidence that it must be those horrible vaccines that have caused it. The problem is, their message is so dangerous that I can’t just disengage, as I did that day, by saying, “We’re done,” and walking away.

Comments

  1. #1 Julian Frost
    March 22, 2013

    Orac:

    Then there’s this study showing that autism/ASD prevalence is still going up

    The link appears to be broken.
    Excellent deconstruction of this nonsense, btw.

  2. #2 Narad
    March 22, 2013

    Because autism is just like Alzheimer’s and, of course, the evil vaccines cause them both!

    One naturally would expect an aluminum connection here, but Conrick goes about it in the most roundabout way possible, quite possibly lifting from a comment to one of her previous entries, taking the fluoridation route.

  3. #3 lilady
    March 22, 2013

    Yes Orac, we all know that you have two day jobs. That’s why you delay posting on the latest research papers. It also gives some of the “RI Regulars” the opportunity to post on other sciences blogs …and the Ho-Po. :-) So I donned my hip waders to post on the Ho-Po to see if I could engage (snare), a few of the cranks from AoA.

    Narad Conrick’s *credentials* are that she is the daughter of a doctor and the mother of an autistic child who reacted to every childhood vaccine. Her child really plunged into autism immediately after she received the MMR vaccine.

  4. #4 lilady
    March 22, 2013

    @ Julian Frost: I found the link in Orac’s second paragraph:

    http://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf

  5. #5 Heliantus
    March 22, 2013

    Since both Autism and Alzheimers are each frequently quoted as being ” A MYSTERY,”

    Crop circles and the Loch Ness monsters are also ” A MYSTERY”.
    I guess we will find out one day that Nessie was a gray seal who became supersized after being vaccinated.

    It must be nice to live in a world in which one has all the answers, with no room left for doubt and uncertainty. Both as a scientist and on a personal level, I am rather envious.

  6. #6 Harold L Doherty
    http://autisminnb.blogspot.ca/
    March 22, 2013

    ORAC thank you so much for sharing your autism expertise once again. Where would autistic children and adults and their families be without the good Doctor Orac eh?

  7. #7 Julian Frost
    NOYDB
    March 22, 2013

    @Harold L Doherty:

    Where would autistic children and adults and their families be without the good Doctor Orac eh?

    Probably still chasing the now disproven vaccine-autism link; seeing more children subjected to quack treatments like stem-cell treatments, chelation, and sodium chlorite enemas etc. etc…

  8. #8 Orac
    March 22, 2013

    The link appears to be broken.

    There is no link. It’s all about the same study.

  9. #9 Orac
    March 22, 2013

    @Julian Frost:;

    Sadly, even with Orac, there are all too many families of autistic children subjecting their children to quack treatments like stem-cell treatments, chelation, and sodium chlorite enemas etc. etc…

    I’d love to change that, but some parents will never be swayed by science, alas.

  10. #10 Ren
    http://epidemiological.net
    March 22, 2013

    “Where would autistic children and adults and their families be without the good Doctor Orac eh?”

    In a worse place than they are now. In a place ruled by quackery and unnecessary medical interventions. In a place where fear and anger are the order of the day, where parents point their fingers at everything and anything that moves instead of accepting the children they have and moving on.

    If only one child has been saved from bleach enemas, chelation agents in their cereal, or chemical castration because of what Orac has written, then we are all as a society in a better place.

  11. #11 Darwy
    Røde grøde med fløde
    March 22, 2013

    What Ren and Julian said, absolutely.

    If we can keep one quack from subjecting children to worthless and DANGEROUS alt-med-bullshiettery, then it’s a job well done.

  12. #12 herr doktor bimler
    March 22, 2013

    Jake asked me if I knew who he was
    Perhaps someone should pin a name-tag to his clothes, to remind him.

  13. #13 rork
    March 22, 2013

    Less morbidity and mortality for the kids, and everybody else, thanks to being vaccinated, is also a job well done.

  14. #14 passionlessDrone
    The Corner of Dude And Catastrophe
    March 22, 2013

    Hello friends –

    I think we can all agree that the Daschle-bots, Jake-bots, and Connick-bots are going to spout the same message no matter what study comes out, with great vigor and many flaws in their logic. They are pretty fun to beat up on, but it does seem increasingly boilerplate simple.

    Even still, doesn’t this finding implicate a sort of ‘epidemic lite’, a rough doubling of autism in children versus adults?

    A few years ago, there was a very robust, large scale prospective attempt to measure ASDs in adults in England. They gave a whole bunch of people a screening tool, the ‘ASSQ’, then based on high scores of that screen, interviewed adults and gave formal diagnostic testing. What they found was a 1% prevalance in the adult age group. The study was so powerfully designed and implemented, Stephen Novella remarked on its strengths at Science Based Medicine:

    http://www.sciencebasedmedicine.org/index.php/autism-prevalence/

    Further, since I wrote my last summary, there has been more data to support the conclusion that autism rates are really flat. The National Health Service also has recently published a survey of autism prevalence. While the US studies looked at children from 3 to 17, the NHS study looked at all age groups. Their question was this is the prevalence of ASD the same or different among various age groups? If the incidence of ASD is truly increasing, then younger age groups should have more ASD than older age groups.

    They found a consistent prevalence of 1% in all age groups they surveyed. This is remarkable for two reasons first, they found the exact same 1% figure as the CDC US survey (assuming the CDC data is more accurate than the phone survey published in Pediatrics). This supports the conclusion that the 1% figure may be close to the true prevalence of ASD in the population.

    Second, the NHS study found that the prevalence of autism was the same in all age groups, strongly suggesting that true ASD incidence has not been increasing over recent decades and supporting the increased surveillance and definition hypothesis.

    If the England study was sound, if the ASSQ is a good way to measure autistic traits, and if, indeed, the England study was robust enough to find a 1% in ‘all age groups'; doesn’t this tell us that the children in the US are having a diagnosis of autism twice that that was found *prospectively* in UK adults? The screening tool used as a first probe, the ASSQ, asked questions like ‘Do you prefer fiction or non fiction’, so we know that it was designed to capture ‘high functioning’ autism.

    Are our methodologies so unsound that after all this time, nearly twenty damn years after DSM-IV, we can see a one hundred percent difference in adults versus children and simply chaulk it up to another, yet to be specified, imaginary artifact?

    Or is the argument now that the England study was so flawed, so awful, that even prospetively targetting thousands of adults, they missed one person with ASD for every one they found? But if this was the case, how come these flaws weren’t apparent when we were in such a hurry to use this study as ‘proof’ that autism rates were stable at 1%?

    Another option would be that the latest data is wrong on the order of nearly doubling the *real* rate. Phone surveys aren’t really that good a way to get data.

    Our common sense comes with a ton of biases, but anyone looking at a timeline of autism prevalence studies is going to be hard pressed not to see a ton of bias in there as well. I don’t know if autism rates are going up, down, nowhere or sideways; but it does seem like these studies are used as an accordion depending on which argument the poster would like to offer.

    Anyone who thinks we should put an ounce of faith into any of our analytics should look to see how quickly the ‘remarkable’ strengths of the England adults study wither away in the face of new data.

    – pD

  15. #15 Dennis
    http://fastsciaticapainrelief.com
    March 22, 2013

    Whether mercury is a cause for autism or not will continue to be debated as long as there are people that don’t trust doctors and lawyers and such.
    My sister has a son that was diagnosed with autism. Being a Mother, she took every precaution she could to protect him, including checking for mercury in vaccines. However, when he was getting one of his vaccinations, she asked the doctor whether the vaccine contained mercury. He repeatedly assured her that it did not, but did not show her the bottle. She demanded to see the bottle and wouldn’t you know it, the vaccine did contain mercury.
    It is times like this, that trust is lost and the anti-vaccine movement becomes stronger.

  16. #16 LAB
    March 22, 2013

    I was there in Arlington, but my parking meter was expiring and I had to run out as the talk ended to keep from getting a ticket. Didn’t get a chance to shake your hand and say hi.

    You treated Jake with respect and this warmed my heart. I thought Jake was cute as a button. If I was a college kid, I’d totally hit on him. Try to bring him toward the light.

  17. #17 Dangerous Bacon
    March 22, 2013

    Dunno, pD, but it seems like you’re expending a lot of verbiage to 1) dismiss autism/ASD prevalence studies in general as unreliable, 2) especially dismiss a British study that shows true autism rates probably haven’t been rising, and 3) support a telephone survey that has conclusions you like (i.e, serves as fuel for the “autism epidemic” shouters).

    How’s that “cytokines haven’t been studied in relation to vaccines” line working out for you?

  18. #18 brian
    March 22, 2013

    pD, it’s worth noting that the UK study you cited surveiled adults in the community; thus more severely affected adults might have been missed because, as was not uncommon when many of today’s adults were children, they were institutionalized rather than in the community.

    The authors noted both that their sample apparently did not include the most intellectually impaired adults and that one in thirteen intellectually disabled adults were found by other authors to have ASD. Accordingly, Brugha’s paper provides what seems likely to be an underestimate of the prevalence of ASD in the total adult population.

  19. #19 Denice Walter
    March 22, 2013

    Yesterday @ AoA, our friend Barry – who has money to burn- suggested renting billboards that announced that autism rates have skyrocketed from 1 in 10,000 in 1980 to 1 in 50 now. And then say, “What gives?” or suchlike.

    The UK study showed that using today’s definitions on people who *were8 children an earlier era – including 1980- were affected at a rate similar to today’s, not the oft-cited 1 in 10,000 or even 1 in 25,000 (Geiers).

    When folks like Barry, Alison, Teresa, Jake or even Andy were in primary school, they probably had un-diagnosed ‘autistics’ in their classrooms or living in close proximity to them because as the study shows, although institutionalisation was prevalent, many also lived in the community. We just didn’t call them autistic.

  20. #20 jane
    March 22, 2013

    If prevalence of serious, low-functioning autism is not increasing in South Korea, then it appears that they are just about to the point of declaring the kid who gets the fewest party invitations in every class is “autistic” and we are well on the way to the same. Frightening that Britain is giving people a defect label based on such factors as whether they prefer nonfiction to fiction, as passionlessDrone reports. Maybe instead of presuming that expert-administered labels are reliable but trying to convince us that people should not be concerned if prevalence seems to be increasing, you would do better to acknowledge that some of the increase in labeling reflects an increasing intolerance of any degree of social awkwardness, introversion, or, sometimes, above-average intelligence.

  21. #21 Science Mom
    http://justthevax.blogspot.com/
    March 22, 2013

    If the England study was sound, if the ASSQ is a good way to measure autistic traits, and if, indeed, the England study was robust enough to find a 1% in ‘all age groups’; doesn’t this tell us that the children in the US are having a diagnosis of autism twice that that was found *prospectively* in UK adults? The screening tool used as a first probe, the ASSQ, asked questions like ‘Do you prefer fiction or non fiction’, so we know that it was designed to capture ‘high functioning’ autism.

    It doesn’t necessarily follow that the autism prevalence in U.S. children is twice that in UK adults for a couple of reasons off the top of my head. For all we know a phone survey could capture a 2% ASD prevalence in the UK amongst children. An adult prevalence survey also does not account for remitted autists.

    Are our methodologies so unsound that after all this time, nearly twenty damn years after DSM-IV, we can see a one hundred percent difference in adults versus children and simply chaulk it up to another, yet to be specified, imaginary artifact?

    Unsound? Not necessarily. Fluid and subject to criteria changes, observer bias, social changes and collection methods? Absolutely. If all of these factors had been static over the last two (or more) decades, then we would be closer to a “true” prevalence and able to identify a “true” increase if there is one.

    Or is the argument now that the England study was so flawed, so awful, that even prospetively targetting thousands of adults, they missed one person with ASD for every one they found? But if this was the case, how come these flaws weren’t apparent when we were in such a hurry to use this study as ‘proof’ that autism rates were stable at 1%?

    Why would different prevalences in different age strata with different survey methodologies at different times be mutually exclusive?

  22. #22 Adam
    March 22, 2013

    It’s hardly surprising that as early diagnosis techniques are developed that more cases are going to be discovered. Autism is after all a spectrum disorder.

  23. #23 Ruth
    March 22, 2013

    Our local paper is again advertising the Geier’s autism clinic, only now without the Geier’s names. Actually, no physicians names, just assurances that they are top people. Still selling hormone treatment, chelation, the whole bit. Check out their website http://www.AutismTreatmentClinics.com, in St. Peters, MO.

  24. #24 lilady
    March 22, 2013

    @ Harold Doherty: There you go again…every time I view your blog, to check on Colin’s progress and your advocacy activities…which by the way, I concur with, mostly, you always have to add a post or two, that lashes out at people in the science community.

    You were recently hospitalized for five days. Scary time, eh? I was hospitalized in the cardiac ICU 30 years ago and it was scary as hell…not knowing when or if I would leave the hospital and what would become of my son who required around-the-clock intensive care.

    Your latest post only reinforces my belief that you still cling to the crap science of an “autism epidemic” caused by *something* (vaccines), that caused your Colin’s developmental disabilities (severe/profound mental retardation, autism…and now, a grand mal seizure).

    I confess I was not overly impressed with a telephone survey…or the piss poor manner it was presented by the CDC, but after ready Emily Willingham’s blog and Matt Carey’s blog and Orac’s blog who analyzed the new 1 in 50 report, I have afar better grasp of the statistics. You, OTH, went right to your source of autism information to read how your pals at AoA, who know diddly squat about science, statistics and analysis, for your latest post on your blog.

    Once again, with your latest drive-by attack on Orac, only reinforces in my mind that you still blame something in the environment (vaccines), “damaged” Colin.

  25. #25 Beamup
    March 22, 2013

    @ jane:

    It’s certainly quite legitimate to question where the line should be drawn. As so many things, there are degrees – it’s not like there’s a single bright line one can draw to say “everybody on this side clearly should be labelled as ASD and everybody on that side should not.” There’s a continuum, and one person’s eccentricity can well be another’s pathology. I doubt anyone in the field would deny that the discussion of refining the criteria for what constitutes pathology needs to continue, and I expect most would entertain the proposition that they could be made stricter.

    That said, your rhetoric seems quite overblown.

  26. #26 Denice Walter
    March 22, 2013

    Again, Jake demonstrates that he has difficulties comprehending simple English:
    Orac clearly stated that he would re-evaluate his position if rates fell 50% by 2010 or 2015 ( or something close).
    Rates rose- thus, all the hubbub these past years @ AoA- somehow Jake weasels an isolated, suspect figure ( assessment of a minority in a place historically associated with prejudice ) that he imagines represents what Orac was originally discussing.
    Hint, Jake: some is not equal to all. You can’t simultaneously shriek about the devastating rise in rates while you maintain that they have fallen precipitously to prove another point.

    At any rate, I am waiting ( and waiting) for Jake’s stultiloquent expose of Orac in which describes the ‘Arlington Encounter’ in mind-numbing detail and then goes on to provide data that illustrate his many accusations:
    I’m sure that he has recordings, bank slips, photos, tapes of phone conversations, letters and e-mail records that show how Orac was paid by Pharma.
    Also I’m confident Jake has precise documented evidence that shows how Orac, the sceptics and the minions are a tightly intertwined coterie of evil ON THE TAKE. Obviously there are photos of all of us boozing it up in pubs and living the high life in tropical resorts.

    People who are journalists provide information that documents what they write so that anyone can see and read it at leisure. If you label someone as being paid by someone to say something, you had better be able to prove- in print or via tape- that there is a connection between the individuals, message and pay. With documents. Not speculation, rumour and gossip.

    I am also wondering where Jake’s article will appear: AoA? Bolen’s place? Barry’s Blog? Gary Null’s? NaturalNews?

  27. #27 Beamup
    March 22, 2013

    It will be particularly interesting to see how he tries to spin the fact that, in order to claim Orac as a liar, he would have to argue that autism rates have in fact dropped substantially… completely contradicting all the usual rhetoric.

  28. #28 Denice Walter
    March 22, 2013

    To play Devil’s Advocate ( why not?) :

    let’s just suppose that ASD rates DID increase dramatically from 1 in 10,000 to 1 in 50 – if it was not labelling-
    what could cause that?
    how would that happen – e.g. physiologically?
    why would a neurodevelopmental condition increase like that?

    Actually I can only think of one condition off-hand where a ‘new disease’s rate increased from virtually zero to 1 or 2 %.
    It was caused by a virus.

  29. #29 Sirhcton
    March 22, 2013

    Of course, a recent paper (http://archpsyc.jamanetwork.com/article.aspx?articleid=1666655) indicating childhood abuse of the mother puts her at higher risk of having an autistic child, will not affect the anti-vax position. They will probably address this as blaming the mother and distracting from the “One True Cause.” Maybe vaccines cause childhood abuse, as well as being abuse in their eyes. See, it is simple when they already have the answer to any question.

  30. #30 I. Rony Meter
    March 22, 2013

    “although admittedly CD sales are plummeting now due to the rise of digital music”

    CD’s are digitally recorded music.

  31. #31 Todd W.
    http://www.harpocratesspeaks.com
    March 22, 2013

    @Denice Walter

    It was caused by a virus.

    You’re starting to sound like Mark Crislip. Personally, like Dr. Crislip, I wouldn’t be surprised if it turned out that the majority of physical maladies have an infectious origin.

    But to pile on your devilish advocacy, if you are correct and a virus is to blame, then clearly (by anti-vaccine logic) the viruses in vaccines, which, recall, have been altered in the lab are behind the increase. See? Autism is a man-made disease. Just ignore that autism has been recorded (if by different monikers) well before the advent of vaccination.

  32. #32 Orac
    March 22, 2013

    @I. Rony Meter:

    I will assume you are provoking me on purpose, as you should know how much I hate pedantic comments.

  33. #33 Denice Walter
    March 22, 2013

    @ Todd W.:

    I was hinting about hiv. And being facetious.
    The rise in autism was probably caused by psychologists.

    But, devilish advocacy I certainly has.
    Be careful of what you speak, a certain journalist might quote you as admitting that SBM created a virus in a vaccine that led to autism and the cause of all our woes.

  34. #34 skeptiquette
    March 22, 2013

    Actually I can only think of one condition off-hand where a ‘new disease’s rate increased from virtually zero to 1 or 2 %.
    It was caused by a virus.

    Interesting thought in light of the immunological findings associated with autism that have been emerging!

    And how could a virus do this? altering the underlying immunology of the host at developmentally critical time periods…

    Or, there could be many other environmental factor other than virus that can fundamentally disrupt immune/cns development. One that is in the forefront of my thoughts is the microflora, but the question is how much has this changed in the recent past?

    Anybody have any interesting papers that look at this question?

  35. #35 T.
    March 22, 2013

    I beg to differ: Autism COULD rise to near100% if we expand the definition of Autism to include, well, being human I guess.

    Currently, they are expanding the definition of ASD so much that I am doubtful that it has any meaning whatsoever.

  36. #36 Johnny
    127.0.0.1
    March 22, 2013

    …Jake asked me if I knew who he was. My response was along the lines of, “Of course, I know who you are. That’s how I know you don’t know what you’re talking about.”

    Trust me, the look on Jake’s face was priceless.

    Does anyone who was there know who the ‘GMO guy’ was? He and Jake spent a while in the hall ,like long lost friends.

  37. #37 Sigivald
    March 22, 2013

    Reminds me of the hysteria (variously) over “Poison/Alleged Poison X detected in Food!!!”

    Without any mention of the relatively novel ability to detect parts-per-trillion of things that we have no reason to believe are harmful in anything less than, oh, a few parts per million, just as a hypothetical example.

    (What’s six orders of magnitude between paranoids?)

    Even bracketing the issue of the “spectrum” and broadening definitions, you are always going to find more of something after you start really looking for it, than before you were looking… even if the incidence was, say, going down.

  38. #38 carl
    March 22, 2013

    Statements which are often code for “accept my unsupported claim as fact”:

    “We need to take this seriously”
    “Keep an open mind”
    “Let’s have an unbiased discussion”

  39. #39 passionlessDrone
    The Corner of Dude And Catastrophe
    March 22, 2013

    @Denice Walker –

    Let’s just suppose that ASD rates DID increase dramatically from 1 in 10,000 to 1 in 50 – if it was not labelling-
    what could cause that?
    how would that happen – e.g. physiologically?
    why would a neurodevelopmental condition increase like that?

    Well, I won’t try to defend 1/10,000, or a lack of effect of labeling, but you do raise an interesting question.

    In fact, when I’ve thought about this, I’ve found myself coming back to a comment (that I think you wrote!), here, on RI, a while ago (a year or more?). Essentially, the idea was, ‘we have replaced infection with inflammation'; i.e,. vaccines, antibiotics, water treatment plants, sanitation have reduced our incidence of infection, but at the same time, we seem to have moved toward lifestyles characterized by increased inflammation.

    By way of example, incidence of diabetes, metabolic syndrome, and obesity are all up, up, up compared to generations past, and all of these are associated with increased levels of inflammation.

    Moving on to autism, did you see the maternal CRP study that came out a while ago?

    http://www.ncbi.nlm.nih.gov/pubmed/23337946

    Elevated maternal C-reactive protein and autism in a national birth cohort.

    Inflammation during pregnancy may represent a common pathway by which infections and other insults increase risk for the disorder. Hence, we investigated the association between early gestational C-reactive protein (CRP), an established inflammatory biomarker, prospectively assayed in maternal sera, and childhood autism in a large national birth cohort with an extensive serum biobank. Other strengths of the cohort included nearly complete ascertainment of pregnancies in Finland (N=1.2 million) over the study period and national psychiatric registries consisting of virtually all treated autism cases in the population. Increasing maternal CRP levels, classified as a continuous variable, were significantly associated with autism in offspring. For maternal CRP levels in the highest quintile, compared with the lowest quintile, there was a significant, 43% elevated risk.

    [This goes nicely with the findings of elevated risk for things like obesity, or asthma during pregnancy]

    Now, this wouldn’t, of course, try to explain away the 1/10,000 to 1/50, or whatever; I tend not to trust any of those numbers. But, if we wanted to search for population level changes that could alter the developmental trajectory of fetuses towards autism, ‘replacing infection with inflammation’ looks to be a good candidate; unfortunately, we’ve been doing that with reckless abandon, as of late. How much, if any, of the 1/50 values are caused by this change I wouldn’t hazard to guess.

    Food for thought.

    – pD

  40. #40 Ren
    http://epidemiological.net
    March 22, 2013

    Uh-oh… Is someone trying to determine the presence of an epidemic using solely prevalence data?

    Tsk. Tsk. Tsk.

    Hint: Prevalence rises as the population has more and more cases and said cases don’t heal or otherwise exit the population. So, as more people with autism live to be old and don’t get “cured” (because how do you cure such a thing?), the prevalence will ___________ (rise or drop?).

  41. #41 Liz Ditz
    March 22, 2013

    How about the sudden and dramatic change in incidence of high blood pressure a few years ago? You know, when the range of what was considered “normal” was lowered quite a bit? (I can’t find

  42. #42 lilady
    March 22, 2013

    You’re all wrong about the prevalence of autism…everyone *knows* that the prevalence of autism is associated with the dramatic uptick of *male pattern baldness*.

  43. #43 lilady
    March 22, 2013

    Good news. Reuben Gaines’ The Poxes blog is up and running. (What would he have ever done without my superb computer technology skills to assist him?):

    http://thepoxesblog.wordpress.com/

  44. #44 Michelle
    March 22, 2013

    @Ruth: Groan. I’ll pass that tidbit on to my health reporter friend at the Post-Dispatch–would make a good follow-up to the stories she’s written on the Geiers in the last 6 months.

  45. #45 passionlessDrone
    March 22, 2013

    @Science Mom –

    For all we know a phone survey could capture a 2% ASD prevalence in the UK amongst children

    Exactly my point; if it did, would this indicate to you that there was a difference between adults and children in the UK? Or would we simply say, ‘it can’t be understood due to [factor X]‘?

    Or put another way, if tomorrow a study of French children came out and showed a 10% rate, would you find that improbable? How would you argue against the idea that these numbers were just a result of observer bias, different criteria, or some other social construct, or us getting really great at detecting autism? Is there a value at which you might think to yourself; this data is suspect?

    We’ve been getting reports like this, ever increasing, for almost twenty years from the soft scientists; I think maybe it is getting to be time that we consider the possibility that they aren’t very good at this.

    Fluid and subject to criteria changes, observer bias, social changes and collection methods? Absolutely. If all of these factors had been static over the last two (or more) decades, then we would be closer to a “true” prevalence and able to identify a “true” increase if there is one.

    The entire point of the NHS study is that it was supposed to be pro-active and actually perform diagnostic testing; it was supposed to be quality compared to passive and phone call answering specific, ‘does anyone in your household have a diagnosis of ASD?’ If it missed autistics not living at home, that’s fine, but this increase was *supposedly* largely comprised in the ‘higher functioning’ group; the same group the NHS study was more likely to find. Regarding fluidity and ‘two decades’, these numbers and the NHS numbers are separated by three years, with well over a decade since DSM-IV; if things can change that much in three years, again I think maybe we should exercise caution in interpreting results.

    I’m not saying that these two studies *should* match up; I’m saying that two years ago, when it was expedient to point to the NHS study as ‘evidence’ of stable rates, the problems with this conclusion should have been visible to anyone who cared about paying attention more than scoring Internet points. We can dance all day long around the semantics of *why* these findings might differ by a factor of 100%, but they do, and that acknowledgement should lend itself to us wondering about how little we know, as opposed to high-fiving each other about being more clever than Jake Crosby.

    Finally, I worry about the ultimate social ramifications of the whitewashing of the autism label; my son is severely affected. He will never live independently. Sooner or later, as the spectrum includes everyone’s quirky uncle, and half of the boys who haven’t kissed a girl; at that time we will be able to dance on the grave of the thimerosal theory with great vigor, but the decision makers who decide whether services are available may eventually decide that having autism isn’t that big a deal; after all, we’ve been living with 3% of boys having it, for forever, and it wasn’t ever, really a problem, society wise.

    The more that an autism label means ‘kind of weird’, or ‘able to serve on a national committee regarding autism research’, but not ‘functionally disabled without being able to live independently’, the closer we get to a calculus where services for autism are not a necessary part of the social contract. I don’t know if that matters in ways more than the abstract to you, but it matters to me in a very real, non abstract way.

    @DB –

    support a telephone survey that has conclusions you like (i.e, serves as fuel for the “autism epidemic” shouters).

    In a completely unsurprising turn of events, you again fail to get it. I think the US numbers are a joke, the NHS numbers are a joke, and the Korea numbers are a total joke. As for the rest, you are simply too boring to entertain.

    @brian –

    The authors noted both that their sample apparently did not include the most intellectually impaired adults and that one in thirteen intellectually disabled adults were found by other authors to have ASD. Accordingly, Brugha’s paper provides what seems likely to be an underestimate of the prevalence of ASD in the total adult population..

    Indeed, but to get anywhere close to 2%, much less the stratospheric 3% from Korea, we need an army of institutionalized autistic adults, one the order of one to two hundred percent of what was found. If 1 in 13 intellectually disabled adults has autism, how many intellectually disabled adults do we need to comprise one full percentage point of the population?

    I put no faith in any of these studies. What I am trying to expose is that neither should you or anyone else.

    – pD

  46. #46 Peebs
    March 22, 2013

    Liz Ditz #41.
    I’ve never replied to your posts before. But the last time I visited my GP (actually a twenty something locum), She told me my BP was shockingly raised. So I asked for the reading.
    140/90 she said (sorry can’t be arsed with correct grammar).
    I told her that was within normal limits.
    Apparently it isn’t and it was the only.time I’ve really,really felt old.
    To my shame I told her she was talking rubbish and I’d been taking BP’s before she was born.
    She then asked about my social habits. So I told her,
    I drink too much, I smoke too much and I eat too much crap.
    I then pointed out that I quite enjoy my life, because I can afford it and have no other responsibilities.

  47. #47 Denice Walter
    March 22, 2013

    @ lilady:

    You know autism woo may actually vaguely resemble your jest-
    the Geier method to block male hormones / anti-androgen meds/ topicals for hair loss.

    Wait a minute… androgens can have some useful effects… like, well, use your imagination. We shouldn’t block them too much.

  48. #48 Indigo
    March 22, 2013

    Stop the press!

    The 2008 study was done with eight year olds. So it’sbasically saying that kids born right around the year 2000 have an autism rate of 1.16.

    Meanwhile, this new study says that in the 14-17 age range, who would have been born over a few years prior to 2000, have an autism rate of 1.8

    1.8 for kids born in the few years preceding 2000 and 1.16 for kids born right about 2000.

    We know that while some kids may not be diagnosed with autism until they are older,they did already have it, kids don’t suddenly get autism as teens. We also know, thanks to the anti-vax folks, that the changing rates are absolutely not a result of better counting/expanded diagnosis/fewer cases remaining undiagnosed.

    So clearly the only possible reason for this is that autism rates have gone down.

    LET US ALL REJOICE! AUTISM IS ON A DECLINE!

  49. #49 lilady
    March 23, 2013

    Liz Ditz and peebs: Heh, heh if you think 140/90 is high, you should come visit me. I’ve just finished titrating off a calcium channel blocker and am now on a beta blocker. Oh joy, my THS (Thyroid Stimulating Hormone) is elevated and I just started taking thyroid medication. I’m hoping that my BP does not elevate with the thyroid medication…but I wouldn’t mind if my heart rate speeds up. Heart rate of “50” is a real bummer, but a consequence of the beta blocker. So, I’m tied to BP/HR monitoring machine because of my “usual” erratic BP numbers and that very low heart rate.

    I think consistent/consecutive BP readings over 135/85 is considered hypertensive.

    @Denice Walter: Every time I think about those two b*st*rds who castrated kids, and then Dr. Mark who wrote scripts for Viagra…I become enraged.

  50. #50 Alain
    March 23, 2013

    @ pD,

    My oldest brother has 6 adult psychiatric dxs, 3 of them agree on neurodevelopmental disorders consistent with asperger syndrome with the other 3 being a mixed bag and not that important for the moment (and I disagree with some of them).

    If it weren’t for his asperger dx (or my autism dx for that matter), we’d not get picked up by a replication of the CDC studies here but in the case of Brugha’s study, we’d likely to be picked up.

    How many adults have other psychiatric dxs who are not picked up by a phone study (CDC). Perhaps we should ask how many psychiatrist there is to diagnose autism in the adult population. Most of them don’t go to school and my actual psychiatrist is not sure I am autistic.

    The more I think about it, the more I want to study in epidemiology.

    Alain

  51. #51 Alain
    March 23, 2013

    Speaking about the network of psychiatrists able to diagnose autism here in the Quebec province, there is a single point of failure, namely Dr. Laurent Mottron MD/PhD who has the requisite training in ADI-R and ADOS to diagnose the adult population but his wait list is 2 years. A requirement of the ADI-R and ADOS is that there is an interrater agreement of 0.90/1 between the psychiatrists doing the scoring of a patient.

    There is other psychiatrists able to deliver a diagnose of autism (I’ve met one in 1995) and they can use the ADI-R and ADOS but they haven’t been trained to use it. Some of them may use the DSM-IV too which may not make a diagnostic as reliable as the ADI-R and the ADOS.

    When a GP here encounter a possible case of adult autism, he get a referral to Dr. Mottron as his hospital & his clinic is the designated tertiary center by the ministry of health to diagnose case of adult autism.

    On the english side, there used to be Dr. Fombonne at McGill and his affiliated hospital but Dr. Fombonne is a child psychiatrist and thus, doesn’t diagnose adult. McGill’s affiliated hospital are the designated centers by the ministry of health to diagnose autism in the english population (and thus, another point of failure). Dr. Fombonne is now in the USA and I don’t know which psychiatrist replaced him to diagnose autism in the pediatric population; I also don’t who’s the psychiatrist for adult autism.

    Someone here can tell me if there a similar state of affair in the US (say, for a state or 2). Is it possible to have a psychiatrist trained in ADI-R and ADOS who deserve the adult population? And how many there is?

    Regarding Brugha, I think he undercounted the sample of autistic in his study but what I’d like to know is which diagnostic tools were used in the case of the subject involved in the CDC study. I’d also have to revisit the korean data too.

    Alain

  52. #52 Alain
    March 23, 2013

    Last post for tonight, a quote I want to stress:

    Diagnosis of autism and Asperger’s Disorder in adults can be a daunting task. First, they share many symptoms with other DSM-IV-TR disorders, such as social anxiety disorder, obsessive–compulsive disorder, and schizoaffective disorder.

    Source: A Scale to Assist the Diagnosis of Autism and Asperger’s Disorder in Adults (RAADS): A Pilot Study
    Riva Ariella Ritvo, Edward R. Ritvo, Donald Guthrie, Arthur Yuwiler, Max Joseph Ritvo, Leo Weisbender.

  53. #53 elburto
    March 23, 2013

    Jane (and pD)

    Frightening that Britain is giving people a defect label based on such factors as whether they prefer nonfiction to fiction, as passionlessDrone reports.

    And pD’s “blah blah diagnosing weird boys who’ve never been kissed blah blah” lead me to ask:

    Is there a significant reading problem that you’ve been diagnosed with, or are you deliberately misrepresenting the content of the ASSQ because it doesn’t fuel your “OMG AUTISM EPIDEMIC!” hypothesis?

    I’ll have to assume the former if you honestly think that the British (sorry pD but an “England study” is either a study written by someone called England, or a study about the England football team) health service is diagnosing ASDs based on whether the respondents like non-fiction books. The only other possible angle could be that you’re being incredibly disingenuous and deliberately trying to cast doubt on figures that show ASD rates as stable.

    Sorry, but the NHS and CDC now show the same incidence, using well-designed tests. You cannot compare national level data like that, with a study mining data from a phone survey that only had a 23% response rate in the first place, and will have been skewed badly by the fact that caregivers with personal investment in “Child health” (ie. those whose child is not healthy) would have been more likely to engage with the survey taker.

    That’s like mining VAERS for trends, and using the results to declare an ‘epidemic’ .

    That would be ludicrous, and lead to a scientific statement that’s equivalent to “Chew toy watermelon, 33:1 efharisto”. Not that it’s stopped the autism boogeymen from doing that in the past.

  54. #54 bluegirl
    March 23, 2013

    Autism is heavily overdiagnosed in the US. The same traits that in my childhood (and in another country) would label the child “a gifted eccentric”, land the child in the gifted kids programme and teach her carefully how not to be bullied and how to get on with other gifted peers, in the US are considered a disorder. Of course there is a lot of true Aspergers out there, but more often, we get kids with a few isolated symptoms, that would never mean a diagnosis ten years ago, and that lessen or dissolve entirely near adulthood.

  55. #55 Roger Kulp
    March 23, 2013

    Re Passionless Drone @ #14

    I posted here in “thinking mom’s” thread a few days ago,that I had an autism diagnosis that was severe enough to be picked up in a school setting in the early 70s,and that I was rediagnosed as an adult,to be in between Asperger,and classic autism.

    I also said that I now have a diagnosis of cerebral folate deficiency snyndrome.I have has more tests since,that are pointing towards another diagnosis of mitochondrial disease,I certainly have enough medical issues for it.

    I belong to a number of Yahoo! groups for autism.These groups are a real mixed bag of antivaccine woo,hard science,and everything in between.I have learned to ignore what I don’t agree with,and focus on the rare stuff that is important to me.

    I have gotten access to some very important genetic and metabolic tests,that are still experimental,I could not have otherwise,from connections to people in these groups.

    I once brought up a topic about how odd it was,that almost all the adults over the age of say,thirty,you see are either higher functioning,or have none of these serious diseases you are finding in autistic children.I heard back from two older women.One was a therapist who worked in group homes,and residential treatment centers,the other a mother of a severely autistic 48 year old daughter,who rescued the daughter from one of the latter places,in a state of advanced malnutrition.

    Between the two,I got a real earful about the lack of treatment in these places,and the underreporting of diagnoses like autism.Most of the autistics out there,who were born before 1990,and are not very high functioning are locked away in these places where no one will ever see them.

    I was lucky that I escaped this,because I had a mother who cared enough to keep me out of such places,and was willing to go to court on my behalf,once to do it.I lived with my mother until she died almost a year ago.The hospital where she died tried to do it again.My landlord helped a lot at first,but I was far enough along in my treatment for cerebral folate deficiency,that I was able to demonstrate I could live on my own,but I was only able to do this,because I had lived with my mother,and found the right doctors,in two different states other than where I live.

    One thing you hear from the Teresa Conricks of this world is how the autism of the last two decades is different than what is gone before.It isn’t,of course,it;s just that there was a generational shift among parents in the 1990s away from locking their severely disabled children up in these homes and “treatment” centers.

  56. #56 Denice Walter
    March 23, 2013

    It appears that the ‘1 in 50′ number has inspired Dan Olmsted (AoA) towards new high marks in his eternal, frenetic scramble for relevance:

    ” Aaron Swartz looks like a ‘canary kid’ to me” because of his ” intensity and depression, keen intellect and chronic ill health”; he was on a combination of meds and had “sensory issues, food sensitivities, gut problems”- just like many children in “this Age of Autism”.

    Dan also discusses “murder suicide” because suicide isn’t purely psychiatric but a “biomedical crisis.. triggered by environmental factors”. Alarmingly, young men seem to be over-represented. Just like you-know-what.

    Olmsted, like many alt med proselytisers and woo-meisters, wants to proclaim every medical and societal problem he encounters as evidence for his own pet theory of causation.

    It’s not an “age of autism”, you ninny!
    It’s an age of amateurs- flailing about in waters deeper than their shallow understanding allows.

  57. #57 Edith Prickly
    March 23, 2013

    cookie please.

  58. #58 Alain
    March 23, 2013

    @ bluegirl,

    Your post is hard to understand given my context. You are essentially saying that eccentric boys and girls would receive a diagnose of autism? With which diagnostic tools? DSM-IV or a combination of ADI-R and ADOS?

    Perhaps you’ll need to revisit my post from tonight in which (I will repeat for your comprehension) the ADI-R and ADOS require trainees to be within 0.90/1 in their scoring of a particular case.

    If there are 10 psychiatrist using the ADI-R and ADOS on a single case and scoring an average of 25 (say, in ADI-R), each psychiatrist must not deviate further than a range of 23.75 and 26.25 in score if my math is correct.

    the DSM-IV doesn’t need scoring so it is possible that there is an overdiagnosis but if we figure out that the majority of diagnoses are done with the ADI-R and ADOS, there cannot be overdiagnosis; the tools are gold standard and were conceived to fix the DSM-IV’s problem WRT autism diagnoses.

    Alain

  59. #59 lilady
    March 23, 2013

    @ Roger Kulp: Now you have hit a raw nerve with me.

    If you have been following my posts with any regularity, You would realize that I have been into State “developmental centers” and State psychiatric centers. I have worked tirelessly toward development of group homes “right at home,right in the community”.

    For your information I worked tirelessly and unrelentingly with NY State to develop the only ICF/MR large group home for children and young adults with extreme medical needs, staffed aound-the-clock with two RNs at all times, when the only out of home placement at the time was a facility in Pennsylvania.

    My close friend whose son is just as physically and intellectually profoundly disabled…and just as medically fragile as my son, have known each other, since the boys were infants…in fact we met at an “infant stimulation” program. in 1977. Both of us were trained to implement a behavior modification program (the forerunner of ABA), to ameliorate their self-stimming/self abusing behaviors. Yes, they displayed autistic-like behaviors…it comes with the territory of being severely or profoundly mentally retarded.

    I’ve also written about the differences between the DSM II, DSM III and DSM IV diagnostic disorders. This article is written by Roy Grinker (the anthropology professor at GWU, that Jake Crosby slimed a few days ago on a post at AoA).

    http://www.unstrange.com/dsm1.html

    I respect your mother for the care she provided to you, but I guarantee you she didn’t provide the intensive 24/7 care that my son required to survive.

    You follow the internet boards and found some instances of poor care in group homes, and now have the colossal gall to make a generalized statement about all group homes and kids and adults being dumped/abandoned in these group homes by uncaring parents. How dare you.

  60. #60 Politicalguineapig
    March 23, 2013

    Sirchaton: You called it. AOA’s denizens are frantically posting on an article that Daschel linked to regarding the studies.

  61. #61 Melissa G
    March 23, 2013

    Could someone please tell me what the “Cookie please” comments mean? I am coming up with some delightful imaginary meanings, but I thought maybe I’d just ask.

  62. #62 lilady
    March 23, 2013

    Dr. Jay has returned to the Ho-Po after several years hiatus.

    He’s promoting his new book and also discussing the 1 in 50 autism prevalence report. All the usual suspects are posting there and I have a number of comments “in moderation”. Come and join me there:

    http://www.huffingtonpost.com/jay-gordon/cdc-one-of-every-fifty-ch_b_2921256.html

  63. #63 Roger
    March 23, 2013

    “Could it be…Satan vaccines?”

    I actually laughed out loud.

    I’m a big fan of Autism Speaks. At any autism awareness event, cranks come out, but as an organization, Autism Speaks seems very well grounded, and officially rejects the anti-vax movement.

  64. #64 Krebiozen
    March 23, 2013

    Melissa G,

    Could someone please tell me what the “Cookie please” comments mean?

    There’s a bug in the ‘Recent Insolence returned’ part of this page, so if you clear your cookies and cache, it reverts back to showing you comments from weeks ago, which isn’t very helpful. Posting a comment seems to temporarily fix this, presumably by downloading a new cookie. I also have recurring random problems with ‘Recent Insolence delivered’ for some reason.

  65. #65 Fishchick
    March 23, 2013

    @Alain I’ve been in the special ed field for 11 years and have an 8 year old on the spectrum. In my area, most autism diagnosis are given without use of the ADOS or ADI-R. They were rrally actually unheard of until about 3 years ago. When the ADOS is used, it’s most often used as a stand alone test and the quotient used in isolation to say yes or no to autism, which is not ideal either, and it’s now being administered by a wide variety of teachers, psychologists, therapists and counselors. (I actually have been trained to administer it, although I have not done so in real practice.)

    In my experience, this means that the label is pretty subjective, and over the time I have worked with students with autism, I have seen more and more children with mild symptoms labeled ASD. (This impacts my job as then parents come to the school for services. It’s very hard to navigate a situation where a parent has been told their child has ASD and needs school services when in fact they do not meet the educational criteria to be eligible. I was told last week by a parent that they will contact a lawyer if we do not find their child eligible. Good times!)

    Anyhow, it may be different in other places, but in this state the best measures of diagnosis are not being used and there may be other resonders who are experiencing this as well, while it sounds like your area may be different.

  66. #66 Passing Thru
    March 23, 2013

    Poor old Dr Jay. He writes an entirely reasonable and almost unanswerable blog item at HufPo and is swarmed by cranks. There seems to be a real realignment in progress as vaccines have dropped out of the frame of credibility as an explanation for autism.

  67. #67 Shay
    March 23, 2013

    Melissa, you never noticed that the autism epidemic began shortly after “Sesame Street” hit the airwaves?

    Think about it….

  68. #68 Hyperion
    March 23, 2013

    Back when the estimates of 1-in-88 for autism prevalence were published, I pointed out that there were a number of studies that had shown roughly a 30% comorbidity between autism and ADHD. As these are both neurodevelopmental disorders characterized by sterotypical delays in the development of various neurological functions at or around specific ages, this comorbidity should not be surprising.

    The reason I mention this comorbidity is because the general consensus among researchers is that the prevalence of ADHD is 5-8%, or between 1-in-20 and 1-in-12, and these estimates have a much higher degree of confidence than the estimates for autism, and these estimates have generally remained steady.

    So a back of the envelope estimate would be that finding autism prevalence rates of anywhere from 1-in-32 to 1-in-60 would be relatively “expected” based on known comorbidity with a related neurodevelopmental disorder whose prevalence is better known.

    Obviously a quick and dirty estimate like this is prone to all sorts of errors, and should not substitute for actual high-quality studies, but I think that it can serve as a basic example that there are other lines of evidence to suggest that findings of 1-in-38 or 1-in-50 are consistent with other lines of evidence.

  69. #69 Bob G
    Los Angeles
    March 23, 2013

    Bluegirl: Are you the BGRS aka Tammy?

    Re: Study correlating childhood abuse of the mother with autism in the children: Looking at the variables the study looks at, I wonder if we are looking at an overall pattern of risk taking and failure to postpone gratification, much as we associate with rebellious teens. That pattern could involve genetic factors — probably a complicated sum of multiple factors, as humans tend to show — and therefore correlate to multigenerational patterns that manifest themselves as everything from normal to slightly eccentric to heavily disabled.

    The parents of disabled children want to ask why, and some of them want to have some tangible thing to blame. It might be more correct (to speculate) that the fully developed human brain is the consequence of many genes, developmental effects, and even prenatal nutrition, and that every fertilized egg (except identical twins) is a random mixture of genes from both parents. Thus we should expect that most of the time (say nine out of ten), the offspring is essentially normal in brain development and anatomy, but when enough unlucky alleles are present, say one time out of ten, the combination results in some degree of abnormality due to the interaction of this unidentified set of unlucky genes.

    This seems offhand to be a very high level of disability, when we think about standard models of Darwinian selection. But the answer is actually fairly simple: Human intelligence is the most important selective advantage on the planet at the moment, and this selective advantage for the whole species can tolerate a fairly high level of damaged people. The correlate speculative hypothesis goes something along these lines: Since the development of the human brain is so complicated and requires so many gene actions, most required in a developmentally regulated fashion (ie: they have to come on and go off at the right time), there is simply no way to breed the damage out of the species in a limited number of generations. Partly this is because a gene activity that results in abnormality in some genetic background may be positively selected under some other genetic background.

  70. #70 Melissa G
    March 24, 2013

    BobG, I wish you wouldn’t refer to the autistic brain as “damaged.” Many of us get along fine, thank you.

    Krebiozen–thanks for explaining the cookies! I thought maybe were requesting a reward every time we suppressed the urge to shout at some commenter or other! :D

    Shay– I KNEW IT! MUPPETS CAUSE AUTISM!!!! :D

  71. #71 Khani
    March 24, 2013

    #70 It’s weird, isn’t it, different people’s feelings about identical terms?

    People seem to deny that depression is real or think it can be cured with happy thoughts, so much so that I would be much happier being called brain-damaged than to have one more person tell me to pull myself up by my bootstraps or the like.

    I can only imagine how it feels to be told you just need to be chelated to be “cured” or whatever. If it’s half as enraging as “Just think happier thoughts” it’s a marvel there aren’t a lot more people getting punched in the face. Grrr.

  72. #72 elburto
    March 24, 2013

    Roger – Autism Speaks may reject anti-vax nonsense, but that’s about all they get right.

    They promote the idea that children with autism are broken, damaged, stolen away.
    They’ve produced some truly offensive materials depicting autism almost as if it were a monster, who stealthily attacks neurotypical children and leaves an empty shell in their place, entirely omitting the reality of ASDs as developmental disorders.

    They speak not for people with ASDs, but for their caregivers. They seem to entirely reject any self-advocacy or Neurodiversity-related activity

    I’ll leave you with this article:

    http://tigerbeatdown.com/2012/04/09/autism-speaks-but-you-dont-have-to-listen/ .

  73. #73 Passing Thru
    March 24, 2013

    Looks like the anti-vaxxers are stuck. Is their story that autism is caused by mercury in vaccines, or is it that the prevalance of autism is increasing. It can’t be both, can it?

    I see they are also having trouble over another vaccine now. A researcher who had trouble being heard has condemned Wakefield and the anti-vaxxers for undermining safety research.

    http://www.reuters.com/article/2013/03/21/us-vaccines-narcolepsy-specialreport-idUSBRE92K06620130321

    No wonder the anti-vaxxers are at each other’s throats.

  74. #74 Alain
    March 24, 2013

    cookie please :)

    Alain

  75. #75 Bob G
    Los Angeles
    March 24, 2013

    @70: My point was that there are lots of behavioral eccentricities that have lots of different names, ranging from schizophrenia to depression to autism. I don’t pretend to have the inside track on which, if any, is due to developmental delays or abnormalities in brain anatomy, but I suggest that it is likely that at least some of the disorders that end up in a psychology or psychiatric clinic are due to structural issues in the developing brain.

    My argument is that there are a whole lot of genes involved in CNS development, and that as they are mixed randomly through the reproductive process, combinations may end up in a result which is unfortunate for the individual, and those results might include traits such as schizophrenia, depression, autism, or even psychopathy. This would be consistent with a modest familial correlation for all of the above.

    Recent findings discussed here at RI suggest that some cases of autism at least begin with abnormalities in part of the brain. It’s obvious that some extreme cases don’t entirely recover. This logic is not a lot different in concept from the development of Parkinson’s disease, which (the last I heard) is understood to be due to the gradual loss of neurons in a particular part of the brain. In the case of Parkinson’s, the problem is physical and obvious. In the case of people whose thinking appears to the rest of us to be strange, it’s not entirely obvious. In the case of people who seem to suffer sensory overload and engage in repetitive movement, it’s sort of in-between.

    I would also argue that humans show a wide range of attributes such as empathy, intelligence, motor coordination, impatience, etc, and that people who are viewed as a little eccentric or unsocial may often just be over on one edge of that spectrum. These folks are not damaged or diseased, but simply examples of genetic variability that helps to confer long term species survival.

    The use of the word “damaged” to refer to many possible outcomes in early CNS development was shorthand for all of the above.

  76. #76 Julian Frost
    NOYDB
    March 24, 2013

    @Bob G:

    Recent findings discussed here at RI suggest that some cases of autism at least begin with abnormalities in part of the brain. It’s obvious that some extreme cases don’t entirely recover.

    Recover? That’s just the type of language for which Melissa G called you out in the first place. Our brains are wired up differently. We are NOT damaged goods and we don’t appreciate language that suggests we are.

    The use of the word “damaged” to refer to many possible outcomes in early CNS development was shorthand for all of the above.

    I accept that you intended no malice, but please pick a different word next time.

  77. [...] and the (not so) Thinking Moms’ Revolution are both throwing their toys out of the cot. Orac and Matt have both covered this. I’m not linking to AoA or TMR. I’m not sure how to use [...]

  78. #78 Melissa G
    March 24, 2013

    Yeah, I prefer “brain-different” to “brain-damaged,” thanks, and for the record I have both ASD and bipolar disorder (a common comorbid condition in women with ASD).

    I have learned over the decades to *compensate* for those social markers and learning issues that arise from having an ASD brain, and I think I compensate very well for the most part, but it is hard work all the time, and to call me “recovered” is just insulting.

    Again, I appreciate that you intend no offense– I am just letting you know *why* your choice of words comes off as denigrating.

  79. #79 Narad
    March 24, 2013

    My point was that there are lots of behavioral eccentricities that have lots of different names, ranging from schizophrenia to depression to autism.

    You think schizophrenia, with plain heritability, is a “behavioral eccentricity”?

  80. #80 Narad
    March 24, 2013

    I also have recurring random problems with ‘Recent Insolence delivered’ for some reason.

    Hmph, yes. This bit of dysfunctionality is new for me. It was showing a January entry as newest, and after clicking on that and reloading, it moved all the way up to March 7. It was working OK just a week or two ago, so I imagine the crack IT staff has been upgrading things again.

  81. #81 Khani
    March 25, 2013

    #79

    I seem to have more problems with the “Recent Insolence returned” column. On my cellphone, it simply doesn’t work. It’s still showing things from something like a month ago.

  82. #82 Politicalguineapig
    March 25, 2013

    My cookies aren’t working since my computer’s in the workshop.

  83. #83 Bob G
    Los Angeles
    March 25, 2013

    Narad: Thanks for the link. Interesting reading, and to the best of my knowledge, pretty consistent with a lot of other reports, data, and anatomical studies over the past 15 or 20 years.

    The point that I was making — to beat this slightly to death, but perhaps it’s necessary — is that when it comes to our genetics, we really are all different. Perhaps we are only a little different, but maybe those little differences are enough to account for a lot of observable differences in personality, irritability, paranoia, curiousity, rebelliousness, and lots of other human characteristics.

    A few days ago, a local television station here in L.A. ran an expose about a care facility that had been housing a 31 year old man who was described as autistic. The reports and descriptions came from his mother, who suspected problems with the facility when she noticed bruising on her son. One problem for this family is that although the man is 31 years old, he is essentially without speech, and does not seem to communicate much at all. So the mother installed hidden cameras in his room, which showed that 3 members of the staff were beating the man, terrorizing him with a weapon, and flailing at him with a towel. The 3 staffers have been arrested, and the man is no longer in that facility.

    What television viewers saw is a man who was also described as having the mental ability of a 3 year old (I hate this kind of description, as it really is an apples to oranges comparison). On the hidden camera footage, he is observed to rub his arm with one hand in a repetitive way, and to react to threats essentially by covering himself and looking fearful.

    So I think it’s fair to ask whether this man is really just “brain different” or is profoundly hurt in some way. If he could understand (which at some level he may be able to do), then would he prefer to be more neurotypical — that is to say, able to fend for himself, live a normal life, and not be subject to being terrorized by strangers? From a biological standpoint, we might consider that at some point in his early development, his central nervous system may have been right on track, but somewhere along the line it took an abnormal turn compared to the rest of us here, who can develop whole sentences and type them out. If you don’t like the term “damaged” to refer to this poor soul, then feel free to use some other word, but the reality is severe, and I think the term works well enough in his case. In his case, the damage occurred at the point that his brain failed to develop capabilities that would allow him to live the way the rest of us do.

    As I was saying, we are really all a little different, and perhaps we are most different in that most recent evolutionary gain, our huge and complex brains. I think it’s fair to refer to some of our differences as eccentricities, others as damage, and still others as within the most common part of the spectrum.

    As for the rest of the argument, as to whether people “recover” from early anatomical developmental abnormalities, that was an attempt at a paraphrase of what the owner of this site has remarked — namely that some developmental delays are just that — delays — and that children who were diagnosed with the term autistic sometimes grow up to where they are no longer diagnosable with that label.

    It’s curious in the extreme that schizophrenia often shows up in late adolescence, as compared to other disorders that are obvious at birth. Is this due to anatomical changes that occur at that stage in life? Not being in this field of study, I leave it to the rest of you, but if my television viewing is any kind of guide, I’m now learning that brain development is not complete until some time in the twenties, which accounts for the way teenagers drive (and sometimes talk back to their parents). Perhaps it is still possible for the developing human brain to take a wrong turn even as late as the teens. I wonder if we will eventually be able to see differences between schizophrenics and normals using some kind of advanced brain imaging.

  84. #84 Narad
    March 25, 2013

    I wonder if we will eventually be able to see differences between schizophrenics and normals using some kind of advanced brain imaging.

    Well, you can see that already, although it’s certainly not a diagnostic tool yet.

    In any event, I shouldn’t have jumped on that bit, and I apologize; there have been in the past few months some Szasz/Laing types around, and it was frankly a kneejerk reaction on my part. A more straightforward statement would have been an objection to the construction of a “metaspectrum.”

  85. #85 lilady
    March 25, 2013

    @ Bob G: I don’t believe that any of us think you chose your words to inflict hurt. Many of the posters on this site have been diagnosed with ASDs and many of the posters on this site have friends and family members who are “on the Spectrum”.

    Melissa G and other posters *obviously* are not severely impacted as the young man diagnosed with autism, who was abused in a group home. They prefer to think of themselves as being part of a huge group of people who have “neurodiversities”. After all, we all have some neurodiversities as part of our genetic make-up.

    I don’t think that autistic man who was brutally abused feels frustrated that he does not have normal intelligence, because his intellectual impairment is all he has ever known, since birth. It is a human trait for us who have the ability to communicate to superimpose what are frustration and anger would be, if we lost the ability to communicate.

    It is interesting that his developmental age is estimated at age 3, yet he does not communicate in any manner. IMO, he was “born too early” to have received the beneficial therapies that younger autistic children are provided…such as ABA, intensive speech/language therapies, teaching him some sign language, the use of word boards and perhaps a communication device that speaks words/short phrases for him.

    While I definitely “for” video surveillance in group homes and nursing homes (anywhere where vulnerable people reside and dependent on caregivers), there is a problem with protecting the privacy of people in their bedrooms or bathrooms. Perhaps the only real protection is to encourage the good and loving caregivers to police their own colleagues and immediately report any verbal or physical abuse/suspicion of abuse.

    Orac and others often state that autism is a developmental delay…which is true for most children. There are children diagnosed with autism who are also severely and profoundly intellectually impaired, who still make progress…but not the spectacular progress seen in other autistic children, who eventually lose the ASD diagnosis.

    Then there are children who were misdiagnosed as having an ASD….but that’s another long topic…that we could discuss for days on end.

  86. #86 Narad
    March 25, 2013

    OT: Brian Deer has been making some appearances over at Retraction Watch. I’m not so sure about the proposal as phrased, but the exchange might be of interest.

  87. #87 Infinity
    Canada
    March 25, 2013

    So, how much is big pharma endorsing you and your rambling blog? The Autism epidemic is real. Anti-vaccine activists need to sing loud and clear, as it is ONE of the causal factors towards the severity of ASD. For families who want to make informed choices, check out VRAN. Vaccine injuries are re-labelled to downplay their correlation (eg encephalopathy). As a side note, your flippant tone is very disrespectful to families of children with ASD.

  88. #88 Julian Frost
    NOYDB
    March 25, 2013

    @Infinity: YAAAAAWWWWWWNNNNN.
    The Pharma Shill Gambit is old. try something original.

  89. #89 Lawrence
    March 25, 2013

    @Infinity – really? Because encephalopathy is extremely well-understood…and it isn’t autism.

  90. #90 Roger Kulp
    March 25, 2013

    Re elburto @ 72

    See this about Autism Speaks
    http://web.archive.org/web/20120709192143/http://focusautisminc.org/LettersFromBarry.asp

    I pretty much say a plague on both their houses.I don’t buy into either the antivax argument about autistic children being born normal,and then being damaged,and I don’t find much to agree with about neurodiversity,especially how they treat those with autism,and more severe disabilities,be it intellectual disability,metabolic disease,or other diseases like cerebral palsy.I don’t follow what groups like ASAN do that much,but I don’t think I have ever seen anything from them,about helping those with more severe disabilities lead more independent lives.ASAN and neurodiversity as a whole often implies they for all autistics.I have much more respect for a group like ARCA,than I do ASAN.

    Those of us who have serious,inherited diseases that can present as autism,are pretty much caught between the two.Neurodiversity pretends we don’t exist,as do a few of the mainstream autism groups.The antivaxers who do,get the rest all wrong,and often make up the most fantastic stories about causes,because they are in denial about their children being born damaged.

    Yes liliady I have been following your posts a few years,but I don’t think any of us can make broad statements about treatment around the country or around the world,based on what we alone have done or heard.

  91. #91 JGC
    March 25, 2013

    Infinity @ 87

    Anti-vaccine activists need to sing loud and clear, as it is ONE of the causal factors towards the severity of ASD

    Citations needed.: What evidence demonstrates that routine childhood vaccinations are a causal factor in the development of autism spectrum disorders?

    Be specific.

  92. #92 lilady
    March 25, 2013

    @ Roger Kulp: Your link to “Barry’s” comment is a dead end. Could you provide that link.

    There are several “Barry(s)” who have posted on AoA and a Barry Segal who is a (very) wealthy benefactor who funds a lot of dodgy autism organizations. IMHO, Mr. Segal is involved in the power play to position himself and his charitable foundation as major players in the anti-vaccine organizations’ schism that Orac has blogged about recently.

    http://leftbrainrightbrain.co.uk/2013/03/01/was-mark-roithmayr-pushed-out-of-autism-speaks-over-vaccines/

    I disagree with your opinion of ASAN and suggest you peruse their website to see all the activities they are involved with on behalf of all developmentally disabled/autistic people:

    http://autisticadvocacy.org/

    How could ASAN “ignore” the estimated 50 % (or more) who have co morbid developmental disabilities?

    Aren’t you the perfect example of a person with autism, who is able to communicate and able to advocate for yourself…and wouldn’t you be rightfully indignant if your opinion is not valued?

    Another observation is that ASAN advocates for the opportunity to have people who are able to, be given the chance for higher education and be given the opportunities for gainful employment, thus removing them from Medicare, Medicaid and SSI rolls. Isn’t this a good thing?

  93. #93 lilady
    March 25, 2013

    @ Roger Kulp: Your last remark, directed at me is a nonpology.

    Let me remind you of your statements at # 55 above…

    “…I once brought up a topic about how odd it was,that almost all the adults over the age of say,thirty,you see are either higher functioning,or have none of these serious diseases you are finding in autistic children.I heard back from two older women.One was a therapist who worked in group homes,and residential treatment centers,the other a mother of a severely autistic 48 year old daughter,who rescued the daughter from one of the latter places,in a state of advanced malnutrition.

    Between the two,I got a real earful about the lack of treatment in these places,and the underreporting of diagnoses like autism.Most of the autistics out there,who were born before 1990,and are not very high functioning are locked away in these places where no one will ever see them.

    I was lucky that I escaped this,because I had a mother who cared enough to keep me out of such places,and was willing to go to court on my behalf,once to do it.I lived with my mother until she died almost a year ago.The hospital where she died tried to do it again.My landlord helped a lot at first,but I was far enough along in my treatment for cerebral folate deficiency,that I was able to demonstrate I could live on my own,but I was only able to do this,because I had lived with my mother,and found the right doctors,in two different states other than where I live…”

    Words have meaning Roger. When you make broad generalizations about the care provided in group homes, based on remarks from two strangers that you met on the internet, and when you slime parents of children who reside in group home “that are locked away where no one ever sees them”, you display a particular lack of sensitivity to loving parents whose children require 24/7 intense care.

    You could of course, find a group home in your neighborhood and plan a visit there. Administrators/staff at group homes, encourage visits from their neighbors…”Right at home, right in the neighborhood”.

    BTW Roger, if you are traveling to an out-of-state doctor who is using experimental tests to test for cerebral folate deficiency and mitochondrial disorder, done at “specialty laboratories”…I would be leery of the doctor and those “experimental tests” done at “specialty laboratories”.

  94. #94 Infinity
    Canada
    March 25, 2013

    @ Julian Frost ~ what’s boring is the “it’s because of better diagnosis” rhetoric.

    @ Lawrence & @ JGC ~ go to the VRAN website

  95. #95 AdamG
    March 25, 2013

    go to the VRAN website

    You’re kidding, right? Here’s some choice bits of pseudoscience from VRAN’s site:

    New research suggests that human foetal tissue, a culture medium which has replaced the contaminated monkey tissue, may induce DNA mutations which may subsequently contribute to children’s autism spectrum disorders.

    Many parents have found that nursing a child through pertussis can be greatly enhanced by using homeopathic and/or herbal remedies.

    Historical trends show that deaths caused by illnesses targeted by vaccines had already declined by as much as 98% before mass vaccination programs for them began. Statistical tampering and incomplete and selective reporting over the last sixty years has made vaccination appear more effective than it truly is.

    Shall I go on?

  96. #96 novalox
    March 25, 2013

    @infinity

    [citation needed]

  97. #97 passionlessDrone
    The Corner of Dude And Catastrophe
    March 25, 2013

    @Elburto –

    In some populations that tend to frequent autism discussions, it is considered poor taste to accuse others of having learning deficiencies. Even worse, personal attacks are frequently associated with someone for whom the underlying strength of argument is insufficient.

    Here is a link to the “modified ASQ” 20 questionS given during the NHS study on adults.

    https://catalogue.ic.nhs.uk/publications/mental-health/surveys/aut-sp-dis-adu-liv-ho-a-p-m-sur-eng-2007/aut-sp-dis-adu-liv-ho-apm-sur-eng-2007-rep-v2.pdf

    For the lazy, here are the questions they gave. For each option, you were given a ‘strongly agree/agree/slightly disagree/disagree’ choice.

    1) I prefer to do things the same way over and over again.
    2) I often notice small sounds when others do not. [is sound sensitivity on the DSM-IV?]
    3) Other people frequently tell me that what I’ve said is impolite, even though I think it is polite. [how is this different than being a jerk?]
    4) I am fascinated by dates. [idiotic. We have a massively heterogeneous condition that manifests as a communication disorder , but 'fascination with dates' comprises 5% of your ASQ score!]
    5) I find social situations easy [compared to what?]
    6) I tend to notice the details that others do not. [Is this on the DSM-IV?]
    7) I would rather go to a party than a library. [Yes. All autistics are book nerds.]
    8) I find myself drawn more strongly to people than to things. [what if you like both?]
    9) When I talk, it isn’t always easy for others to get a word in edgeways. [how are you supposed to know this, if you can't tell if people are bored when you are talking?]
    10) When I’m reading a story, I find it difficult to work out the characters intentions.
    11) I particularly enjoy reading fiction. [Which answer means you have autism?]
    12) I find it easy to make new friends.
    13) I know how to tell if someone listening to me is getting bored. [Assuming you aren't nonverbal.]
    14) I find it easy to do more than one thing at once. [people with autism can't multitask?]
    15) When I talk on the phone, I’m not sure when it’s my turn to speak. [Assuming you aren't non verbal.]
    16) I find it easy to work out what someone is thinking or feeling just by looking at their face.
    17) I like to collect information about categories of things (e.g. types of car, types of bird, types of train, types of plant, etc)
    18) I like to plan any activities I participate in carefully. [Anyone with any spontaneity? No autism!]
    19) I enjoy social occasions. [You heard it here first, if you have autism, you don't like parties.]
    20) I am not very good at remembering people’s date of birth. [Again with the dates!?]

    Maybe you should have paid attention to the actual study before accusing me of having a learning disability of ‘deliberately misrepresenting the content of the ASSQ’. A full ten percent of your score involves how you feel about dates. How could I make it any bigger of a joke than what was copy/pasted above?

    Let us be absolutely clear here; These were the questions used to determine who should be given detailed ADOS; 7403 people got this test, and based on these results, ADOS-4 interviews were performed. [going from 7403 original participants, to less than 600]. Based on that, 60 got ADIR+DISCO. After all of that, a grand total of 19 adults actually got a diagnosis of autism with ADI-R and DISCO. Nineteen.

    These data are not shown in a table because the base number for people with ASD was too small to make meaningful statistical comparisons (19 cases were identified in the 2007 Adult Psychiatric Morbidity Survey sample)

    Hey, did you know that for all of that work, starting with over 7000 people, they still couldn’t find almost any females i.,e a staggering 9:1 male to female ratio?

    The ASD prevalence rate was higher in men (1.8 per cent) than women (0.2 per cent). This fits with the gender profile found in childhood population studies. [LOL!]

    If you think that the test was so well defined, where are the adult females with autism? Are they disproportinally institutionalized? Try to find me a study in children that approaches a 9:1 male/female ratio. Have fun on that mission and let me know what you find.

    Usually you’ll hear that females are under-counted even in children studies; but if you get up to a 3:1/4:1 ratio of males to females in adults, you’ve shot way past 1%, haven’t you?

    If the NHS study is as well defined as you like to claim, that means that there is a sizeable difference in male to female ratios between children and adults.

    I don’t know if there is an epidemic or not, but pretending that this study tells us anything is the the exact opposite of shouting epidemic based on horrible data, shouting ‘no epidemic’ using horrible data.

    I happen to think that the ramifications of being wrong on this question means that we shouldn’t gloss over problems in the data like this. We may have different opinions on this.

    @Roger Kulp –

    I’m not saying that autism didn’t exist before, but we need to be careful about extrapolating out what two people on the Internet told you about how things *used* to be. I grew up in the 70s, I knew dozens of kids, I had dinner in their homes and slept over in their basements. Many had one or more siblings. Yet none of my friends, or their friends, had a brother or sister that was institutionalized like this; they *may* have had older siblings that they never met, I suppose, but none of us had younger siblings that met this fate. The fact that it did happen, sometimes, doesn’t mean that it was happening a lot.

    But as with my response to elburto, the question is, how much of a margin of error do we allow as being acceptable? Is a ten percent real rise in autism no big deal? What about a fifty percent true increase? Those numbers could *easily* hide within the studies we are discussing here, and we’d never know it. The problem is, in our zeal to demonstrate the scientific illiteracy of the 1/10,000 crowd, we seem to have lost a sense of importance that it is entirely possible a non-trivial, real increase is hiding in our incredibly shaky survey data.

    When pressed, everyone can be shown enough data to accept that:

    1) Advanced parental age is a risk factor for autism in the offspring.
    2) As a population, we have been waiting longer to have children than parents in previous generations.

    or

    1) Surviving an early birth is a risk factor for autism.
    2) Pre-term infants are surviving at a much greater rate than generations past.

    So, we have good reason to believe that *some* amount of the increase is real. How much? Who knows? I assume that the standard answer would be something along the lines of ‘well, the rest is diagnostically driven'; this might be true, but it also might not be. The nice part of this argument is that it doesn’t matter what prevalence numbers come out, you can just keep saying ‘the rest’.

    I’ve seen you post re: cerebral folate deficiency several times; the first paper I read on that and folinic acid was a big eye opener for me; it spoke of nothing less than a *cure* for the children reached earliest. You also seem to get that the medical comorbidities associated with autism aren’t necessarily detached; i.e., you got treatment, and now you function in a space where you can live independently. I am happy for you. I guess that’s my way of saying that I am in agreement with a lot of your positions.

    That being said, take a look at the maternal CRP study that I mentioned above; it was big, 1.2M pregnant women, and observed a dose relationship; i.e., if you were in the top quintile of CRP, risk increased ~ 40%, if you were in the top decile of CRP, risk increased by ~ 80%. [compared to botton quintile/decile]

    If a state of increased inflammation is a risk factor for autism, as indicated by this study, and as is consistent with human and animal studies of *acute* inflammatory events during pregnancy, think about our population changes over the past thirty or forty years:

    1) Fatter. Way fatter.
    2) More diabetes.
    3) More asthma.
    4) More metabolic syndrome.

    There isn’t any fuzzy diagnostic handwaving that can make the incidence of these conditions greater in the past than they are today. But all of these conditions are associated with *increased* inflammation, and if lifestyle changes toward a state of greater inflammation is a risk factor for autism, and we have relentlessly pursued lifestyles associated with increased inflammation, what insight does this give us on the incidence question?

    After your experiences with *finally* getting a correct *medical* diagnosis in a way that has had a meaningful impact on your life, are communiques from two Internet grandmas and the wild variances of our prevalence data really enough to convince you of a stable rate of autism? You don’t have to embrace a stratospheric 1/10,000 to 1/50 jump to still find cause for great concern about how comprehensive our understanding is. The only consistent finding in the epidemiology of autism is that last times data was low because of how good we are at finding autism this time; that shouldn’t be a ringing endorsement of competence. If there is a real increase (up and above advanced parental age), how would we know it if our default mindset is that everything is the result of better diagnostics?

    – pD

  98. #98 Alain
    March 25, 2013

    @pD,

    I’m curious and I am being sincere, how would you redo the Brugha study?

    Alain

  99. #99 Alain
    March 25, 2013

    BTW, I’m late to answer Fishchip but your post is enlightening. Thanks you very much.

    Alain

  100. #100 elburto
    March 25, 2013

    @pD – I did not accuse you of having a learning disorder. I asked if you had a reading impairment, or were deliberately and disingenuously trying to imply that a phone survey with a. 23% response rate was more rigorous than two large studies by the CDC and NHS.

    Now I know!

    BTW, as someone who does have a learning disability and is non-NT, I find that hanging from the “I’m conspired against and there’s an epidemic and a plot to hide it!” cross really made my arms hurt.

    Also, your jab at women who’ve actually fought at the frontlines of disability reform, writing them off as “internet grannies”, is misogynist and ignorant of history. Without people like that there-d be no DDA/EA, no ADA, and the physically and intellectually disabled would still be labelled as “freaks” and would be warehoused in sh¡tholes like Bedlam or Willowbrook.

  101. #101 Infinity
    March 25, 2013

    @ Adam G ~ you continue along your close-minded, merry way and I will go along knowing the truth. Peace out, debaters!

  102. #102 Lawrence
    March 25, 2013

    @Infinity – you would say that it has become easier to diagnose those with bio-polar disorder, schizophrenia, and other serious mental disabilities, right? Why? because we understand them better – whereas in the past, all of those individuals would have been given a single diagnosis of “crazy” and locked away in institutions…..over the past several decades, decisions were made to put together an “autism spectrum” made up of various attributes that individuals possessed as part of the autism “diagnosis.”

    If anything, any increase can be completely laid at the feet of the people who put together the DSM – without which, we wouldn’t have an “autism spectrum” to begin with.

  103. #103 Alain
    March 25, 2013

    @Infinity, read that:

    http://corticalchauvinism.wordpress.com/2013/03/25/key-players-in-autism-iv-the-brainstem/

    and tell me you still believe in vaccines as the cause of autism :)

    Alain

  104. #104 novalox
    March 25, 2013

    @infinity

    Have any actual scientific evidence to back up your “truth”?

  105. #105 Beware
    March 25, 2013

    “@ Adam G ~ you continue along your close-minded, merry way and I will go along knowing the truth. Peace out, debaters!”

    Run along. If you stick around here, you’ll eventually have to learn something, which will be very uncomfortable for you. I’m sure you can find a nice safe prodisease blog that censors all facts. You’ll be happier there – you can pretend to be a rebel, bravely sticking it to the man.

  106. #106 Alain
    March 25, 2013

    I can hear cricket :)

    Alain

  107. #107 Narad
    March 25, 2013

    you continue along your close-minded, merry way and I will go along knowing the truth. Peace out, debaters!

    At least “Infinity” had the decency to come back and formally demonstrate that there’s nothing going on between its ears.

  108. #108 ken
    March 26, 2013

    Comments anyone? The Systemic Toxicity of Aluminium Adjuvants
    http://www.vaccine-tlc.org/exley-video.html

  109. #109 Narad
    March 26, 2013

    Comments anyone?

    Well, I’m not going to sit through 51 minutes of that, but I imagine there are worse things that one could recommend than certain brands of bottled water.

  110. #110 Alain
    March 26, 2013

    @Ken, Why don’t you look for your barbie tonight?

    Regarding Chris Exley, I could not be bored to listen to a 51 minutes video so I went instead on pubmed and reviewed a few select abstract (as if I haven’t reviewed enough today…) and he seem to have a beef regarding aluminum? well, sure enough, to rant about aluminum in vaccine and also, in infant formula.

    You see, there is a very minor discrepancy regarding aluminum adjuvant in vaccine and aluminum in infant formula; the later containing at least a hundred (yes, 100) times as much aluminum as compared to the former. You’d think a chemist would understand the dose-response curve but alas, it seem to be lost on him.

    Oh by the way, where did Chris get his training in neuropathology? (Exley C, House E, Polwart A, Esiri MM. Brain burdens of aluminum, iron, and copper and their relationships with amyloid-β pathology in 60 human brains.)

    Alain

  111. #111 novalox
    March 26, 2013

    @ken

    Have you ever heard “the does is the poison?”

  112. #112 Narad
    March 26, 2013

    Ah, yes, a classic (PDF) of Medical Hypotheses prompt peer review. He seems to be really into the silicon.

  113. #113 Narad
    March 26, 2013

    Oh, and do note the acknowledgment in the Medical Hypotheses entry, if nothing else.

  114. #114 ken
    March 26, 2013

    You haven’t seen the video therefore your comments are irrelevant.

  115. #115 Julian Frost
    NOYDB
    March 26, 2013

    Ken, we don’t need to see “Expelled! No intelligence allowed” to know it’s hogwash. We don’t need to go to a lecture by a flat-earther to know it’s a waste of time. As Alain and Narad have poitned out, Chris Exley has a bee in his bonnet. We don’t have to watch the video to know it’s a load of stercus tauri.

  116. #116 ken
    March 26, 2013

    Since you are all too lazy to see the video he states that Some people may have a body burden of aluminum among other facts.
    Aluminum toxicity
    emedicine.medscape.com/article/165315-overview

  117. #118 Stewartt1982
    March 26, 2013

    Ken:
    Scientific knowledge does not increase via the production of videos. If you want people to seriously evaluate Chris Exley ideas, post links to his papers. If Alain can dig up abstracts on pubmed, so can you.

  118. #119 ken
    March 26, 2013

    @narad -The Journal of Alzheimer’s Disease published an article about Silicon-rich mineral water-
    www,iospress.metapress.com/content/92280q5860p8543m/?p=108c9e34d76544f5b4a334cc7dd07858&pi=13

  119. #121 ken
    March 26, 2013

    iospress.metapress.com/content/92280q5860p8543m/?p=108c9e34d76544f5b4a334cc7dd07858&pi=13
    Since I’m 70 yrs old it may help me.

  120. #122 Narad
    March 26, 2013

    Since I’m 70 yrs old it may help me.

    So go drink Volvic; nobody’s stopping you. And posting a broken link three times doesn’t make it work.

    Don’t expect people to sit through random hour-long videos, though.

  121. #123 herr doktor bimler
    March 26, 2013

    He seems to be really into the silicon.

    So one of the commonest elements in the earth’s crust is incredibly toxic and we have no natural protection against it, while another is wonderfully protective and we are practically dependent upon it?
    OK, evolution at work.

  122. #124 herr doktor bimler
    March 26, 2013

    So, how much is big pharma endorsing you and your rambling blog?

    Rather than asking rhetorical questions, I would prefer Infinity to come out and make an actual claim about the going rate for Big Pharma endorsements.
    Asking for a friend.

  123. #125 Narad
    March 26, 2013

    So one of the commonest elements in the earth’s crust is incredibly toxic

    Well, he doesn’t go that far. It’s just “inimical to life.”

  124. #126 Narad
    March 26, 2013

    (This line appears to actually go back at least to Johann Bjorksten, although Exley certainly recycles it.)

  125. #127 Narad
    March 26, 2013

    ^ “Johan.”

  126. #128 Narad
    March 26, 2013

    Oh, man, that Ward Dean entry is way better than I expected.

  127. #129 herr doktor bimler
    March 26, 2013

    Oh, man, that Ward Dean entry is way better than I expected.

    I got as far as the author’s conviction that calcium atoms naturally polymerise into chains, and that aluminium atoms cross-link those chains. At that point the eye-rolling was too strong for continued perusal.

  128. #130 Narad
    March 26, 2013

    At that point the eye-rolling was too strong for continued perusal.

    No, really, ride it to the baseballs and the Emilio Lizardo–style self-experimentation.

  129. #131 herr doktor bimler
    March 26, 2013

    So if calcium atoms in the body polymerise into calcium monofilaments because of valence=2, and aluminium cross-links those monofilaments because valence=3, I shudder to think how much damage carbon could cause.

  130. #132 Narad
    March 26, 2013

    I shudder to think how much damage carbon could cause.

    This has already been dealt with by Fenwicke L. Holmes.

  131. #133 Krebiozen
    March 26, 2013

    ken,

    Since you are all too lazy to see the video he states that Some people may have a body burden of aluminum among other facts.

    It’s a strange disjointed talk, and I gave up about 6 minutes in, after he explained that one day, when his brilliant insights about the toxicity of aluminum are recognized, there will be a plaque on the wall of his local registry office commemorating the fact that he was married there, next to the one commemorating Darwin’s marriage there. Such hubris turns me off, I’m afraid.

    I did also look at his study in Medical Hypotheses which states:

    We have described for the first time a case of vaccine-associated MMF and CFS which was coincident with an aluminium overload.

    The problem I immediately have with that is that there is no evidence that this patient had aluminum overload. The highest urine aluminum he had before he was given silicon-rich water was 1421 nmol/day or 38.3 µg/day, which is barely above the reference range quoted by most labs, and within the reference range quoted by one lab. If anything this shows that this patient had no trouble excreting aluminum, and at that rate he could have excreted all the aluminum he had been injected with in vaccines ((hepatitis A 250 µg + hepatitis B 250 µg + polio none + tetanus/diphtheria up to 625 µg = 1,250 µg) 4 years previously in little over a month.

    A biopsy of the patient’s injection site found elevated amounts of aluminum salts still present 3 years after vaccination, which suggests that much of the aluminum from the vaccines remained in his muscles, rather than having rushed straight to his brain as Dr. Exley seems to suggest.

    Serum aluminum concentrations are not mentioned, which I find odd, and that makes me wonder if they were measured but were normal.

    After he was given silicon-rich water to wash out the aluminum in his body, his urine excretion of aluminum fell but:

    While this result suggested that the patient’s body burden of aluminium was reduced during this period there was no noticeable concomitant improvement in his condition.

    I don’t see any reason at all to link the patient’s symptoms with aluminum. Aluminum can be a problem in people with renal failure exposed to large amounts, or people with normal renal function exposed to enormous amounts. Since vaccines contain tiny amounts of insoluble aluminum salts that slowly leach into the bloodstream in quantities very similar to those absorbed from our diet, and that even people with poor renal function could excrete easily, it seems extremely unlikely that they could cause the kinds of problems Dr. Exley suggests they do.

  132. #134 ken
    March 26, 2013

    Thank you all for your thoughtful comments. Just trying to protect what brain I have left at 70- the memory does go-
    I’m a democrat but I remember the slow decline of reagan.

  133. #135 JGC
    March 26, 2013

    Infinitiy, I didn’t ask you to direct me to an anti-vaccine website: I asked you to provide citations to studies demonstratinf routine childhood vaccinations are a causal factor in the development of autism spectrum disorders.

    Surely you are aware there’s a difference?

  134. #136 herr doktor bimler
    March 26, 2013

    After he was given silicon-rich water to wash out the aluminum in his body, his urine excretion of aluminum

    So silicon-rich water *blocks* the renal excretion of aluminium? And this is supposed to be a good thing?

  135. #137 herr doktor bimler
    March 26, 2013

    No, really, ride it to the baseballs
    OK, the treatment of aluminium-impregnated baseball leather with lithium — simultaneously curing the baseballs of depression *and* Alzheimers — was interesting; and Bjorksten’s electrified skull-cap approach has potential.

    Bjorksten and colleagues extracted a substantial part of the aluminum present in human cadaver brains with DMSO. (18)

    Before trying this at home I should probably read Ref. 18 to see whether a blender was required.

  136. #138 Lawrence
    March 26, 2013

    Okay, this guy was just posting over at ShotofPrevention – you have to check this out….perhaps Orac could do his take???

    http://gardasilsyndrome.com/

  137. #139 Infinity
    Canada
    March 26, 2013

    It looks like it’s feeding time for the narcissistic trolls who call themselves “scientists.”. Damn ~ I just stooped to their level. Time to move on :-)
    http://www.ageofautism.com/science/

  138. #140 Narad
    March 26, 2013

    Okay, this guy was just posting over at ShotofPrevention – you have to check this out….

    He appears to have more than a few screws loose, including not understanding citizen’s arrest. He’s also tvtower-dot-com (including section on “microwave mind control”), verizonfraud-dot-com, tmobilefraud-dot-com, courtroomfraud-dot-com, deathbyvaccination-dot-com, pathologyofautism-dot-com, autismapocalypse-dot-com, and on and on.

  139. #141 Science Mom
    http://justthevax.blogspot.com/
    March 26, 2013

    Time to move on

    Yea you’re right; AoA is more your speed.

  140. #142 Narad
    March 26, 2013

    Oh, and he appears to have lost the defamation suit that underlies courtroomfraud-dot-com to the tune of $15,000 in punitive damages: Bagwell v. Phillips, No. 97-13631, 1998 WL 1656174 (Fla. Cir. Ct. Nov. 23, 1998).

  141. #143 Lawrence
    March 26, 2013

    @Narad – wow, that’s a bit of crazy there.

  142. #144 Lawrence
    March 26, 2013

    @Narad – I also noticed he doesn’t like the “Rabbis” vaccine very much……

  143. #145 novalox
    March 26, 2013

    @infinity

    Describe yourself much?

  144. #146 Alain
    March 26, 2013

    ummm…..classic tactic #183 of antivaxers: when the science doesn’t go along with your beliefs, project your personality disorder on the messengers.

    Stay classy Infinity.

  145. #147 Narad
    March 26, 2013

    wow, that’s a bit of crazy there.

    I tried to make a measured post at Shot of Prevention, but it hasn’t shown up. Anyway, no, he’s not a lawyer, and he has no biological training whatever, making his BLAST comment all the more puzzling.

  146. #148 Chris
    March 26, 2013

    Narad, there has been a problem. If you get returned to the top of the page and there is no message, submit it again but shorter. It is not in moderation, it has completely disappeared.

  147. #149 Narad
    March 26, 2013

    If you get returned to the top of the page and there is no message, submit it again but shorter.

    No soap. It’s of no particular consequence. He runs “Phillips Microtechnology” of Florida and has previously tried to get into the hospice racket and been an “officer” of a law firm. (He likes to tout being an ABA Associate Member.) In short, a complete poseur.

  148. #150 ChrisB
    Australia
    March 26, 2013

    The problem with changing estimates of the population of people with autism is that readers then attribute to the later population the same characteristics as the earlier population. For example, in the 70s the estimates were that 60% of the autistic population was mentally retarded and a quarter were nonverbal. It certainly isn’t the case that intellectual disability rates have soared – thought it is true that quite a slice of the population previously diagnosed as MR is now diagnosed as autistic and MR – and it isn’t true that the rates of communication handicap have gone up by 200%. Any productive discussion of incidence needs to proceed at the symptoms level rather than the diagnosis level.

  149. #151 Alain
    March 27, 2013

    offtopic: is there someone who can get me a paper?

    https://www.ncbi.nlm.nih.gov/pubmed/22878131

    alain . toussaint at securivm . ca

    Thanks
    Al

  150. #152 Alain
    March 27, 2013

    offtopic: got the paper. Thanks

    Alain

  151. #153 Krebiozen
    March 27, 2013

    HDB #136

    So silicon-rich water *blocks* the renal excretion of aluminium? And this is supposed to be a good thing?

    He seems to think that silicon-rich water chelates aluminum so it is excreted, thus reducing the body load and hence, eventually, urinary excretion. Since we are constantly ingesting, absorbing and excreting aluminum, and only small amounts are retained, mostly in our bones, assuming good renal function urinary excretion is a measure of how much we are ingesting and absorbing, not of our total body load, so this doesn’t make a great deal of sense. It looks to me like another manifestation of the “body as a bucket slowly filling with toxins” metaphor that underpins a lot of woo.

  152. #154 passionlessDrone
    The Corner of Dude And Catastrophe
    March 27, 2013

    @Elburto –

    So, was my assessment of the questions used on the ‘modified ASQ’ valid? Did they, in fact, ask people if they preferred to read fiction? Do you see anything about fascination with dates in the DSM?

    I am making no implication of the phone survey’s validity, in fact, I think it is largely a joke. If you think the NHS study is so great, why not explain to me why they couldn’t find nearly any females with autism? Do you really believe that a 9:1 male/female ratio is valid? As someone with such a keen understanding of the ASSQ you were so worried about me misinterpreting, I’m sure you have some ideas on this. Or is your idea of analyzing the data just to keep saying that it is ‘rigorous’, but failing to back it up with anything more substantial?

    I have made no conjecture regarding a conspiracy or a plot.

    The fact that I used the phrase ‘internet grannies’ has no effect on whether or not we should attempt to utilize annectodal evidence when trying to understand a condition as mysterious as autism incidence. Replace it with whatever term you’d like, but at the end of the day, all you have are two people that gave Roger Kulp their stories. I’m not doubting their stories, just doubting the wisdom of applying them to a global scale on the assumption that it explains all our observations.

    @Alain –

    A bioinformatic approach is going to answer this question someday. We are slowly accumulating a series of data that will give us insight into whether today’s children face a different risk of autism than generations past. I’m not arguing that we are clever enough to undertake this yet, but we are, incrementally gaining on it. There have been several studies on perinatal blood spot / cord blood in the past few years that showed associations with growth factors/cytokines/other blood borne substances that seemed to confer risk (or protection) from autism. In some places (California / other states?), authorities have been saving blood samples from a percentage of newbornds for the several decades. I suspect we will eventually accrue enough information to be able to see if the biomarkers of risk have changed over the decades; a limitation may be how much we can really extract from the stored blood samples from forty years ago. (?) I don’t pretend that this would give us fine grained predictive powers, but any empirical values will be superior to the ‘trust us, we really just missed half of the people with autism last time’ we’ve been getting from the psychologists.

    If the NHS study was ‘as good as we can do’ in the adult population, that’s fine, but we cannot admit this, and simultaneously use it as ‘evidence’ of a lack of a true increase. Do you think that the male/female ratio of autism is truly 9:1, as shown by Bhuga? Do you really think that a fascination with dates should comprise 10% of a pre-screening score to determine if someone has a pervasive developmental disorder? If the answer to those questions is ‘no’ (or ‘hell no’), then it shouldn’t be the holy grail of epidemiology, but rather, a set of data to be evaluated with great caution and many caveats.

    Look at it this way, another *prospective* prevalence study using an ASSQ screen, followed by targeted diagnostics of every child in a school district in Brazil is here, ‘Brief Report: Prevalence of Pervasive Developmental Disorder In Brazil: A Pilot Study’, it reported a microscopic .3% prevalence. It even lists Fombonne as an author. It followed the same methodological structure as Bhuga, and the Korea study that reported 3% (!). Perhaps there actually is a lot less autism in Brazilian children than UK adults, and a microscopic amount compared to Korean children? I don’t know, but I certainly *could* use this study to jump up and down that something is protecting Brazillian children from autism, and hold it up next to Korea to “prove” that autism is ten times more prevalant in Korea than Brazil. Was Korea really ten times more sound than the Brazil study? Should we really believe that a targeted study missed 9 children with ASD for everyone that it found so that we can reach the stratospheric Korean numbers?

    My take home message is to trust none of these studies; the other tact I see being taken are to trust the ones that are expedient to reaching a preferred conclusion. If you want to pretend that autism rates are stable, then Bhuga and US CDC numbers are ‘rigorous’ and pretend that a 9:1 male/female ratio isn’t a meaningful artiface. If you want to pretend there is an epidemic, keep shouting 1/10,000 and 1/50 and pretend that there has been no diagnostic participation. Want to pretend that 2% is a low value, then the Korea study was ‘really rigorous’ and insist that other, population wide, pre-screen studies don’t exist. I don’t necessarily need a better solution to be able to point out that the data is wildly inconsistent between studies, and as such, we should exercise extreme caution in gleefully claiming mission accomplished with a very particular slice of the data.

    – pD

  153. #155 Ren
    March 27, 2013

    Why, I do believe we have ourselves someone who is “just asking questions”… in 865 words. Wow.

  154. #156 skeptiquette
    March 27, 2013

    Um… no Ren, we have someone logically explaining why we should use extreme caution interpreting and using the current suite of epidemiological studies pertaining to autism prevalence.

    Did you read his post?

  155. #157 skeptiquette
    March 27, 2013

    I would argue that as far as people actually commenting, Pd is far and away the most informative, well read person that frequents this blog when it comes to a discussion about autism.

    As someone who has been reading this blog for over 4 years and has learned a lot from many different people that post here, this is my honest opinion.

  156. #158 skeptiquette
    March 27, 2013

    So, thank you pD for being logical, and taking the time to understand the literature and relating to the rest of us what your thoughts are, you are a gifted person.

  157. #159 Alain
    March 27, 2013

    Do you think that the male/female ratio of autism is truly 9:1, as shown by Bhuga? Do you really think that a fascination with dates should comprise 10% of a pre-screening score to determine if someone has a pervasive developmental disorder?

    No and no. I don’t have fascination with date and I have the DX.

    As far as diagnosis goes, I’d trust an approach with fMRI+DTI and a good classifier and finally, clinical judgement to diagnose autism but that cost big bucks for an epidemiology study. Which diagnostic tools we could use for epidemiology purpose over the phone?

    Alain

  158. #160 Mu
    March 27, 2013

    People who understand the literature don’t go around and claim “don’t trust it”. They show where the error lies. In this specific case, if an article proclaiming itself as a “pilot study” does not give results similar to much larger studies, the first course of action should be to look at the methodology and sample size and find out if the results of the pilot study are actually statistically significant and methodologically sound. Not claiming “that can’t be right” after reading abstracts.

  159. #161 lilady
    March 27, 2013

    (Watch for the anecdote)

    When I first got involved in advocacy more than 30 years ago, I met a number of parents and their children who were diagnosed with (regressive) “classic” autism. The parents all spoke about the ratio of males/females (8:1) who had the clinical diagnosis of autism…so that ratio that they spoke of, has been *around* for more than 30 years.

    I found this article that offers up some history about the sex difference ratios and opinions about that ratio…

    http://questioning-answers.blogspot.com/2011/03/sex-ratio-and-autism.html

  160. #162 Ren
    March 27, 2013

    “Did you read his post?”

    Of course I didn’t. I come here to read Orac’s posts and maybe some of the comments. I mean, Jesus Christ, that’s a lot of words.

    Then again, I’m running on an hour’s sleep and I have twelve more to go before I can sleep again. So I’m a bad mood, and I’m in no mood to read more than I have to.

    Have you ever been sleep deprived? Do you feel all warm and fuzzy inside, or do little things like 800+-word comments on blogs annoy the hell out of you? I’m in the second group. I know I shouldn’t. I know I should show some decorum and read and analyze everything that is being written/posted/regurgitated from other sites and then answer accordingly. But, sometimes, very few times, I just don’t have the patience.

    Then I make some remark trying to be funny and someone has to ask the obvious question of whether or not I read the goddamn post/comment/treatise. Does that make me a bad person, a troll? I don’t know.

    I really don’t know. Stop asking!

    Now, some of you who know me will state that this behavior is totally unlike me, and you may even question our host as to whether or not someone has hacked my account with WordPress. “Is that really Ren?” you’ll ask.

    It’s me. I’m just tired. The world has been spinning so fast for me lately that I’m nowhere near being caught up, and it continues to speed up some more. I’ve been up since three in the morning after going to bed at one. For what?

    Because someone decided not to get a vaccine?

    Because someone decided not to wash their hands when they cooked a meal for a large group of people?

    Because Legionnaries Disease is a hell of a thing?

    Yes. Yes. Yes. And yes. The last “yes” being for the question in your mind about leaving me alone.

    I mean, maybe, if we were going to the woods together to sit down and hammer out a book about science, maybe I’d let you ask these silly questions of me. “Did you read his post?”
    “No,” I would answer. “I did not. Tell me, was it a good post?” I ask in return. You’d hold up your iPad or iPhone or what not and point to it.
    “You can read, can’t you, Ren, my boy?”
    “Yes, but I’m cooking us breakfast.” I’d be cooking us an awesome breakfast with bacon and eggs and maybe some pancakes with maple syrup. I’d make them at ten or eleven, or noon even, if that’s how late you get up.

    “Mmmmm… These are good pancakes,” you’d say.
    “I know. Anyway, tell me about PD’s rant.”
    “Rant?”
    “Okay. Tell me about his post?”
    “Well, he is trying to warn us not to hold on too hard to the available epidemiologic data on autism as it is subject to change and is at the whims of the researchers, the respondents, and the subjects under observation,” you’d say.

    “That’s news? That’s the case with all epidemiologic data. It’s always in flux, I find.”
    “What do you know, Ren?” you’d ask with some disdain.
    “Nothing,” I’d answer. “I’m just a humble servant in the garden of science.” (I stole that from someone.) “But what do you think PD means about a bioinformatic approach answering this question someday?” I ask you.
    “Well,” you respond, “he is correct about us collecting more and more bio data as time goes on. Data is the new oil… Or, if you’re into the space opera ‘Dune’, data is the spice. And you know what they say about he who controls the spice.”
    “It’s always about spice with you, isn’t Ren?”

    “It is,” I answer. “I am intrigued, though. PD writes with some level of disdain about the researchers, particularly in PD’s approach to the changes in screening methodologies. It’s almost as if PD didn’t take the intro to Epi course from CDC, whereby there is an excellent explanation on how changes in case definition really do change prevalence rates for the population under surveillance.”
    “Ah, yes, I see that,” you’d say. Maybe.
    “And I pointed out to PD in another thread on another blog under another rather lengthy reply of his (hers?) that we shall never, ever say that there is an epidemic of anything based solely on prevalence data. It’s not kosher. It can be embarrassing if, like a certain delegate from the state of Maryland, you claim that a rise in prevalence of HIV cases means that your HIV prevention strategies have failed. Incidence had dropped and more people were getting the treatment they needed. More were also being tested. So more were being identified and added to the pool and more were surviving long enough to be counted… All that raised the prevalence rate. But let’s get back to PD.”

    “Let’s,” you’d say in agreement.
    “PD doesn’t want to trust any of these studies. Why? That seems like a cop-out to me. Trust nothing and the truth will set you free? Why not trust but verify? Use these studies to form some opinion on which to build a rational approach to the issue? Let these studies, flawed as they may be, be good for something, even if it is to teach us how not to conduct these studies” I’d say.
    You nod your head in agreement like the good friend that you are.

    “I mean, PD prescribes several scenarios under which we are to pretend what we want and adapt the data accordingly. I don’t know about you…”
    “You don’t…”
    “Of course, I don’t… But I wouldn’t want to pretend something and then look for the data. Rather, I look for the data and look to interpret it. I think PD casts a wide net of indictment on all data and all research, asking us to trust no one, or anything… Bacon?”
    “Yes, please.”
    We can all agree on bacon. At least that’s how I think it would go if I had the time to thoroughly read PDs blog-posts-in-a-comment-section and discuss them with you after you make such a ridiculous question as “did you read his post?”

  161. #163 DT35
    March 27, 2013

    Someone needs a nap.

  162. #164 Martin
    March 27, 2013

    Ren,

    That was a glorious piece of writing, and I hope life lets you make up your lost sleep as quickly as possible.

    Thank you.

  163. #165 lilady
    March 27, 2013

    But Ren, apparently “skeptiquette” believes that pD’s Gish Gallop and habit of JAQing off, is every bit as qualified as Orac and the many posters on here who are researchers, scientists, physicians…and you.

    Here, from pD’s first post on his blog are his qualifications (degrees in English and MIS) and studying for “self-awarded degrees” in the hard sciences. Do you have his same qualifications? :-)

    http://passionlessdrone.wordpress.com/about/

    “So what is this all about?

    I am currently seeking self awarded degrees in immunology, neurobiology, gastroenterology, genetics, metabolism, epigenetics, and other areas to try to see how they all work together in the world of autism. Any commentators are welcomed to come along for the ride. Hopefully we can learn something from each other.”

  164. #166 Lawrence
    March 27, 2013

    @lilady – how does one seek “self-awarded” degrees? I guess when he feels like he’s learned enough?

  165. #167 lilady
    March 27, 2013

    @ Lawrence: I dunno. Perhaps the question should be “why one would seek self-awarded degrees”…instead of taking free online courses in epidemiology?

    http://diplomaguide.com/articles/Free_Online_Epidemiology_Courses_from_Top_Universities.html

  166. #168 Alain
    March 27, 2013

    Here I come, announcing a future post @ casa securivm chock full of science because I did a meta-analysis on my own using simple instruction and analysed the result and instead, I get schooled by lilady on autism sex ratio which correct my assumption of 4:1 and I’m very grateful for it because it remove a doubt I had about Brugha’s study and I get schooled by Ren on trust but verify epi studies (and I do appreciate it).

    Good night Ren.

    Regarding that post, I analysed sample data from an OCD meta-analysis which was coming with an application named Signed Differential Mapping and which is available here: http://www.sdmproject.com/

    I played with it last night (and yes, I have about an hour here or there of sleep) and today. Blog post tomorrow.

    Alain

  167. #169 skeptiquette
    March 27, 2013

    Jeez bud, you could’ve gotten some sleep instead of writing that screed… but if it helped reduce some of the stress that goes a long with not sleeping, then I am glad you did write it.

    I found it entertaining, especially envisioning talking this over a nice breakfast of pancakes, eggs, and my favorite, Bacon!

    It was a rhetorical ?. It was quite evident you didn’t read it.

    Thanks though.

  168. #170 skeptiquette
    March 27, 2013

    Lilady,

    I’m not a big fan of appeal to authority, or the inverse: that if you are not formally educated in a certain scientific discipline(s) you can’t inform yourself and form a logical opinion. Sorry, this is the age of information.

    I stand by my opinion, I would take pD in my corner any day of the week over Orac. It is obvious who has a more thorough understanding of Autism and the related literature. I don’t care what his background his is, or that he is seeking self-arwarded degrees, I base my opinion on the merit of his writing and how it lines up with the extant literature.

    I am in no way trying to diminish Orac’s abilities, just that he hasn’t spent much time digging into the actual science like pD has. Orac has focused more on the vanity affairs of autism science, which I find interesting to read and entertaining. If he did delve into the literature and wrote about it more often, we would all be smarter. Unfortunately, when it comes to autism science, these posts are few and far between.

    “who is wise? One who learns from everybody”

  169. #171 Politicalguineapig
    March 27, 2013

    PD:If you want to pretend that autism rates are stable, then Bhuga and US CDC numbers are ‘rigorous’ and pretend that a 9:1 male/female ratio isn’t a meaningful artiface.

    First of all, men are subject to more genetic disorders than women, since the Y is less stable than the X chromosome. Secondly, autism and other spectrum disorders tend to be underdiagnosed in women.Surveys aren’t going to pick up women who are undiagnosed or who have learned to fake neurotypicality. Also, PD, sockpuppets tend to be frowned upon here, so knock it off.

  170. #172 Science Mom
    http://justthevax.blogspot.com/
    March 27, 2013

    Also, PD, sockpuppets tend to be frowned upon here, so knock it off.

    PGP, if you think that skeptiquette is a pD sockie then I can say with considerable confidence that that isn’t the case; they are two entirely different people.

  171. #173 Melissa G
    March 27, 2013

    Ren, I freakin’ LOVE you, man. That post was awesome, and I really hope you can get well-rested soon.

    My grandmother died of Legionnaire’s, back before they screened pneumonia patients for it regularly. It is nasty and horrible, and I wouldn’t wish it on my worst enemy. I hope you’re through the worst of it, whether you’re suffering from it or helping to treat it.

  172. #174 Narad
    March 27, 2013

    Do you think that the male/female ratio of autism is truly 9:1, as shown by [Brugha]?

    You do realize the 95% CI on that 8.62 odds ratio is 2.2–34.5, right?

  173. #175 Ren
    About to fall asleep, finally
    March 27, 2013

    “I hope you’re through the worst of it, whether you’re suffering from it or helping to treat it.”

    I help figure out outbreaks of it. It’s like a puzzle, only, you know, more serious.

    “It was quite evident you didn’t read it.”

    Oh, geez, look what we have here, a fortuneteller, everybody. She can tell just from what I wrote that I didn’t read PD’s blog post. If I didn’t read it, why is it that I discussed several of his points with you in our theoretical breakfast back-and-forth? I guess because I’m as good a mind-reader as you are. Tell me, when will you go work for the FBI to decypher what criminals mean when they write things like “All your base are belong to us”?

    But let’s put that aside and talk about self-education. When I was a kid, I self-educated… uh… myself… about electricity by placing my fingers into a light socket. I clearly remember the moment. It was in the living room, on the wall facing south, and the pain and taste of copper in my mouth was tremendous. I remember the faint “pop! pop! pop!” of the circuit breakers going as I was unable to move my body until the electricity was cut.

    I never did that again, and certainly not with an aluminum foil cone around my naughty bits. (Google it, but discretion is advised.)

    My uncles, on the other hand, self-educated themselves on electricity by reading books that my grandfather bought them when he was in Texas during the Second World War. He tried volunteering for the Army, but he had some medical issue that prevented him from going. He never forgave himself after his brother ended up going and getting killed in Europe. So grandpa decided to give his kids the best education he could afford as a field worker (cotton picker). He bought a whole bunch of books on electrical work and radio repair and television repair and all that. Through the years, my two uncles became very adept at fixing anything that had electricity running through it.

    Dad was more into mechanical things. So he got books on how engines worked. Mom made Dad go to night school and then on to engineering school. But that’s a whole other story.

    Anyway, the uncles opened their own shops to fix TVs, radios, etc. The problem was that they had to learn by trial and error, and very much had the luxury to do so. It’s not like they were medically treating a person or giving health advice, or interpreting complex sets of data for others. They were just fixing TVs and radios, so get off their backs about it, okay?

    They were self-taught, but no one validated their learning. They had to learn on their own and break a lot of delicate electronics in doing so.

    Now, I’m not going to sit here and “appeal to authority” as you accuse Lilady of doing. That’s not how I roll. (I roll downhill.) But I will tell you that there is something to be said about a person who takes the time to learn (from others, even) and then has his learning validated by experts in the subject matter, i.e. professors. I know it costs a lot of money to go to college these days, and college isn’t for everyone. PD might not like the college setting, or he may not be able to afford it. He could be a hermit at the top of a mountain in Idaho with scarce internet access. (Though I doubt that. Have you seen the length and breadth of his writings? I mean, Jesus! [And I do mean Jesus.])

    Still, he needs to have that knowledge validated in some form. There are plenty of certificate programs out there that are outside a college setting. There is even a certificate in public health for which you just have to take a test. That’s all… Answer a few questions about public health, including epidemiology, and you get the certificate. I’m not going to say that it’s easy, but my (future) DrPH advisor and personal mentor was on the board of public health professionals who designed that certificate test. If you have that, you’re pretty much telling the world that you know your stuff.

    I don’t have that.

    What I do have is an MPH (Master of Public Health) degree and six years of experience as an infectious disease epidemiologist. I also have 17 years of experience as a medical technoloigst, a lab tech. And, starting in September, I’ll be in a Doctor of Public Health (DrPH) program at a top-notch school.

    It took A LOT for me to get into that school. Liz Ditz, Todd W., and even our esteemed host can tell you what I went through to get in and how much I had to prove that I knew about public health and was capable of applying it. See, while I may not be self-taught, I still learned, and I have the academic validation to prove that I know what I know and I know how to apply it.

    So when you and PD come in here swinging your knowledge, it does irk me a bit. It irks me even more when I am accused of not reading something. I read it, and it’s the same stuff that he has been writing in other places… Basically, in my opinion (and not that of my employers, wink, wink), he’s trying to play the skeptic while manipulating the data.

    Heck, he’s not manipulating them (the data, it’s plural), he’s giving them the Guantanamo Bay treatment. He’s beating them into submission until they tell him what he thinks he wants to hear. Absent that, he wants us to ignore it.

    I can’t ignore it. A lot of those data are meaningful and meant to tell us something.

    “If he did delve into the literature and wrote about it more often, we would all be smarter. Unfortunately, when it comes to autism science, these posts are few and far between.”

    Then it is you, “bud”, who hasn’t read the posts.

    That reminds me. I am not your “bud”. I am not your friend. I am not here to chum it up with you and be on a first-name basis. (Though, I can see where we have to be on first name bases [plural of basis, of the pedantic readers among you] given that I only give my first name as an identifier.)

    You haven’t been reading when Orac deconstructs the latest, greatest study, or paper, or case series, or survey on autism, and how he does so with a scientific scalpel… And some insolence, of course. But he can defend himself. Let’s go back to being “self-educated”…

    I guess the take home message, bud, is that a person can be self-educated all they want and tell you the things you want to hear in a way that you want to hear them, but, without some sort of third-party, objective validation, that self-education is in doubt. Now, I guess I could take apart his arguments one-by-one, strand-by-strand, but what’s the fun in that? (That, and some of the other readers are doing a bang up job at it… Even better than I ever could.)

    Because I’m all about fun right now. I’ve had a long day with a lot of work, and then I drove three hours to go meet friends that I hadn’t seen in years. Then I come home to you calling me “bud” and asserting that it was obvious to you that I didn’t read based on a goddamned joke I made?

    (Pardonnez mon français.)

    Where, exactly, do you get off? Why don’t you go rent an apartment off my back?

    Lastly,

    “You do realize the 95% CI on that 8.62 odds ratio is 2.2–34.5, right?”

    Although it doesn’t include 1.0, that’s a wide ass CI. We need more research into it. (Duh!)

  174. #176 Denice Walter
    March 27, 2013

    Whenever I hear someone cavalierly announce that a professional education and experience aren’t ‘all that’, I am immediately overwhelmed by the sirens, bells and whistles of my internal — detection system.
    Oh my! That sounds like what I hear @ PRN or didn’t I just read that at Natural News? Or AoA or TMR?

    Anyone can claim superiority over anyone else on any topic…
    doesn’t make it true.
    Although our critics may not like it, standard education and degrees reflect an external validation, not our own.

    And I know, in the world of woo, it immediately makes us suspect.
    Stamp of Approval by the Cult of the Professionals.
    Yes, the Powers-that-Be approve!
    But who- pray tell- approves of YOURS?
    Other than YOU.

  175. #177 Chris
    In total awe...
    March 27, 2013

    … Ren, for his sleep deprived take down. Sir, I raise my glass of wine to you. Bravo!

  176. #178 passionlessDrone
    The Corner of Dude And Catastrophe
    March 27, 2013

    @Lilady –

    Here, from pD’s first post on his blog are his qualifications (degrees in English and MIS) and studying for “self-awarded degrees” in the hard sciences. Do you have his same qualifications?

    I am flattered that you continue to take so much interest in my background and educational pursuits. Thank you.

    The interested reader will note that on the page you linked to, the primary author of Wild-type microglia arrest pathology in a mouse model of Rett syndrome, published in Nature last year, left a comment on my blog. The recent paper describes an immunological approach to rescuing a rett syndrome model in mice. The behavioral change was time sensitive, and only worked if the immune system in the developing brain was irradiated. He stopped by my blog and commented on my content, but his manner was much different than your own.

    Funny enough, on another one of my posts, Paul Patterson left a comment indicating that my coverage of the area of the connections of neuroimmunity and behavior was sound. If you don’t know, Paul Patterson has been performing a series of maternal immune activation autism models, including the first showing direct pro-inflammatory cytokines (IL-6) could cause behavioral abnormalities. But I’m sure you know that already. In any case, if you haven’t read this post, I think you might like it. Here is a link/

    Now, I may just be a little bit jaded after all of your kind posts in my direction, but even still, given a choice of a person to judge my understanding of the literature, I’m going to choose them, over you. Please don’t take that the wrong way.

    I do genuinely appreciate your advocacy.

    @Ren –

    I hope you get some sleep and bacon.

    Further, I hope that you have not gotten the idea that I think that studying the epidmiology of autism (or anything) to be an easy task, I don’t. It is about the ramifications of being ‘some’ wrong. The perfect example of the complacency is on display here. A professional epidemiologist, who doesn’t like me very much, has made the strong argument that the complicated analysis of this type of condition is, by nature in flux. I am not disagreeing with this argument. And yet, earlier on this thread, someone was saying how ‘rigorous’ the 1% numbers were. If Ren is right, elburto was wrong. If elburto was right, then ren was wrong. Of course, it could be that both are somewhat right, the studies were as rigorous as we have/i>, but our understanding is still largely in flux. This is what I believe our current state is.

    What I am disagreeing with is my perceived lack of alarm being taken in incidence question, that our default answer is always ‘better recognition’. Ren, what prevalence value would you question? If Canadian children were reported at 5%, or 10% tomorrow, would you question it, or would you assign it entirely to improved diagnostic capacities? Considering that the question is, ‘are our children different than they were in the past?’, I think we should be err more on the side of caution, than not. One manifestation of this thought process is, Bhuga isn’t cause for waving a ‘Mission Accomplished’ flag, it is a starting flag.

    As far as ‘trusting’ scientists, you do not earn my trust by reporting ever increasing values with the explanation being that the last time, you had misfired. If the papers I read and post about in my blog kept doubling their numbers ever couple of years, I would start to get a little skeptical of the specificity of the accepted conclusions, and thus, my concerns. We are casting a big net when the population is every child being born, a small change means a lot of individual people.

    Also, bioinformatics.

    @politicalguinepig

    First of all, men are subject to more genetic disorders than women, since the Y is less stable than the X chromosome

    Thank you for this information. You might be interested in a paper describing interesting hormonal interactions that might be responsbile for part of the altered male to female ratio in autism; Sex Hormones in Autism: Androgens and Estrogens Differentially and Reciprocally Regulate RORA, a Novel Candidate Gene for Autism. The paper discusses feedbacks loop wherein testosterone or estorgen would inversely affect production of another protein, RORA, which has roles in neural development and the immune response, and has previously been found depressed in autism. But perhaps you already knew this. I have a post about it on my blog if you are interested.

    Secondly, autism and other spectrum disorders tend to be underdiagnosed in women.Surveys aren’t going to pick up women who are undiagnosed or who have learned to fake neurotypicality.

    You seem to misunderstand the implementation of Bhuga. They performed a very thorough process to attempt to randomize UK citizens to participate. It was not a survey. Over fourteen thousand homes were contacted by mail (sorted through 250+ counties or UK county equivalents or something), seven thousand ‘modified ASQ’ tests (‘do you like dates?’) were given to people in homes, 600 ADOS tests were given, and 19 diagnosis were given. That’s the point. They went to *a ton* of trouble to find people, and for some reason, their ratio of females was crazy off.

    I’ll accept the argument that women are undiagnosed. but you should see that this study was designed to catch them, and it did not. How much this bothers you, if at all, depends on how you feel about trusting that all of the increase is imaginary and then being wrong.

    I am not skeptiquette.

    @Skeptiquette –

    You are too kind.

    – pD

  177. #179 Alain
    March 27, 2013

    @pD, I’m running short on sleep (and patience) and will crash soon after my analysis is done but 19/600 ain’t 1%; where do they get the rest?

    Alain

  178. #180 Narad
    March 27, 2013

    They went to *a ton* of trouble to find people, and for some reason, their ratio of females was crazy off.

    Allow me to clarify the previous comment: Do you understand what a confidence interval is, and that the canonical 4:1 ratio is comfortably within Burgha et al.’s range? I don’t know why you would want to hang your hat on this as being “crazy off.”

  179. #181 Narad
    March 27, 2013

    ^ Oh, great, now I’m misspelling it, too. “Brugha.”

  180. #182 I. Rony Meter
    March 28, 2013

    “I’m not arguing that we are clever enough to undertake this yet”

    Ah, confusing intelligence and training with knowledge.

    If we aren’t clever enough yet, we will have to wait a long time for evolution to help out. We don’t have the data yet to definitively make statements about autism risk. You made that argument yourself. People as clever as those of today will make the determinations when the data are in.

    I like how Brugha doesn’t match the recent data, which supposedly implies the new data are wrong, except that Burghs is wrong. There isn’t a consistent message there.

    Burghs had limitations. Much like your description of the study has limitations. You leave out key points, like calibrating the asq against a tested subpopulation. It isn’t like you were shy about using a lot of words, so why present it like you did?

  181. #183 Khani
    March 28, 2013

    #175 “So when you and PD come in here swinging your knowledge”

    Is that what they’re calling them these days?

  182. #184 Khani
    March 28, 2013

    #176 I understand what you mean.

    Everyone thinks they can do my job, too. I wonder how many people would tell their plumbers or accountants or electricians UR DOIN IT WRONG?

    Yet everyone thinks, for some reason, that they can write. Now everyone thinks they know how to do research, too, and yet it’s fairly clear that they can’t distinguish between good sources and bad ones.

  183. #185 Narad
    March 28, 2013

    I’m running short on sleep (and patience) and will crash soon after my analysis is done but 19/600 ain’t 1%; where do they get the rest?

    Alain, it’s census-weighted from 19/2828 to 72/7333 with ADOS-4 ≥ 10 to account for nonresponders.

  184. #186 Denice Walter
    March 28, 2013

    @ Khani:

    Sure. And I read their stuff everyday. Alt med fans are encouraged by the actiivities of their gurus- who also usually haven’t a standard education in science.

    But people who have been so educated can spot them a mile off!
    Although there are a lot of clues- too much to go into for now- their entire project have a cobbled-together appearance.
    Research findings are not a string of slightly-related data but a web or mesh of intricately-related parts that reach out into deeper foundations and point towards fture research. Also knowledge doesn’t stand or fall because of one study as tyros might fevently believe in their heart of hearts.

    Do I think a person who is not educated in science can take take things apart and re-arrange them and so arrive at a ground-breaking discovery?
    Mostly, no. Although it may be possible- after all anything’s possible- but the probability is extremely low. Maybe a century or two ago, it might happen occasionally.

    But alt med proselytisers rely upon this myth in order to convince their customers that they indeed are that one in a million.
    When you read blogs like AoA or TMR, you’ll see that the followers buy into this myth as they emulate their leaders.

  185. #187 lilady
    March 28, 2013

    @ pD: You flatter yourself. I do not regularly read your blog…preferring to look at it occasionally after you have posted an especially long rambling comment on this blog or other science blogs.

    I am not not impressed that two authors of articles that you posted on your blog, posted comments back at you. I am impressed with the number of anti-vaccine, anti-science doctors and authors of dodgy studies, who post at you, complimenting you on your *expertise* and knowledge.

    I stated in a post upthread that you tend to resort to Gish Gallops and JAQing off. (That 865 word comment that Ren stated was an instance of “just asking questions” contained 13 (rhetorical) questions.) And, IMO, most of your posts are Gish Gallops…a tactic that I see on the Ho-Po, used by the groupies from AoA.

    You state you appreciate my advocacy…but we are on different planes of advocacy. I do not have my own blog and make the mistake of assuming that I have the ability to analyze each and every paper that is published…and I don’t have a fixation on cytokines/inflammatory responses as an important factor in the onset of autism. The hundreds of studies, published in first-tier, peer reviewed science and medical journals and by the IOM, are proof enough for me that vaccines are not a factor in the onset of ASDs.

    My advocacy is a proactive type of advocacy, with far-reaching positive results for developmentally disabled children and adults living in New York State. I leave the analyses of complicated research studies to those who have the ability to dissect a study, such as Orac, Matt Carey, Science Mom, Catherina, Emily Wilkerson, Ren and so many others.

  186. #188 Alain
    Well rested...
    March 28, 2013

    Thanks Narad; considering the number of times I read that particular study, I tend to doubt myself if I failed to notice a thing or two and I had to admit I was confused about the 19/600 figure of pD.

    @pD, why did you post the figure 19/600 when it’s instead 19/2828? Did you intend to deceit? Also, you didn’t mention that the modified ASSQ had been validated with a large subsample of confirmed case; have you ever studied psychometrics?

    Alain

  187. #189 Ren
    March 28, 2013

    @PD

    I’ll sleep when I die, I guess. Maybe. That’s all up in the air.

    “The perfect example of the complacency is on display here.”

    Really? I disagree with you because we’re all debating this. I am not complacent. I don’t think anyone in disagreement with you is complacent. I hope our host is not complacent. It is because we question and probe and examine the evidence that I know we’re not complacent. Then again, my definition of complacent and your definition of complacent may be different, just like we disagree on the definition of a questionnaire (and it’s worth).

    ” A professional epidemiologist, who doesn’t like me very much…”

    I neither like you nor dislike you. It would be irrational for me to like or dislike a person I haven’t even met. I don’t even like or dislike Jake Crobsy. (Have you heard of him? He decided to go to school and get his knowledge of epidemiology validated.) What I do like or dislike is you approach to examining the evidence. You find some aspect, any aspect, of something that you don’t like and, in your view, the whole thing needs to be invalidated and thrown out. Ah, but you then find something that you like, and the whole thing is without fault. That is what I don’t like, not you personally.

    ” Ren, what prevalence value would you question?”

    I question any and all prevalence values, and my level of questioning is based on the approach to the obtainment of said prevalence value. Self-selected questionnaire whithout an objective or semi-objective measure of autism? Highly questionable. Coordinated surveillance using a standard case definition which requires objective measures by third-parties (i.e. healthcare providers and not parents)? Less questionable. Basically, until and unless we get a lab test with 95% accuracy for autism, I’m going to question everything… And maybe even after.

    ” If the papers I read and post about in my blog kept doubling their numbers ever couple of years, I would start to get a little skeptical of the specificity of the accepted conclusions, and thus, my concerns.”

    Then you don’t know how prevalence works. In fact, I may even wager that you are confusing it with incidence. If a bucket keeps filling with water, is it because water keeps falling into it? Or is it because the spigot at the bottom of the bucket was closed? Or is the bucket size changing? These are the questions I ask before I can say that there is more water with any degree of confidence. For me to just quickly state that there’s a deluge going on is somewhat irresponsible.

    “Also, bioinformatics”

    Whatevs.

    “They performed a very thorough process to attempt to randomize UK citizens to participate. It was not a survey. Over fourteen thousand homes were contacted by mail (sorted through 250+ counties or UK county equivalents or something), seven thousand ‘modified ASQ’ tests (‘do you like dates?’) were given to people in homes, 600 ADOS tests were given, and 19 diagnosis were given. That’s the point. They went to *a ton* of trouble to find people, and for some reason, their ratio of females was crazy off.”

    It wasn’t a survey? Let me tell you a story.

    We were out in the middle of the Chihuahuan desert, looking for hantavirus. Our task was simple. We had to pick houses at random in a village and ask the occupants if they had recently had flu-like illness, then we’d collect a sample of blood. Back at the lab, we tested their blood for anti-Hanta antivirus. Now, the randomization was performed for us by the statistics department of the university where I attended. They took a map of the town and said, “Go to this house, this house, and this house.”

    And so we went.

    Guess what? The layout of the town had changed. It was so small and out of the way that the map we had was outdated, and even a map we got together that day would be outdated in a matter of months. Not only that, but the population was in constant flux. (I like that word, flux.) The men in the village made a long trip to the United States to work every Spring and returned in the Fall. We were there in the summer, so the male-to-female ratio was crazy off.

    So the only thing that we were able to say about hantavirus in that village was that localized to the participants. That’s all. In your examples, and in any example where the subjects are asked to describe their signs and symptoms, and there is little to no objective measure of the condition being reviewed, we can only generalize so much.

    Even if they went through a ton of trouble to find households in England, we cannot say with any degree of confidence that the results would be extracted to, say, Iowa.

    Also, I’m done.

  188. #190 Alain
    March 28, 2013

    Something need to be said about psychometric. In the world of autism, psychometric makes the world go around; you can’t have genetics without psychometric; you can’t have fMRI or DTI without psychometric; you can’t even have a diagnosis without psychometric, even the DSM-IV is a form of psychometric and obviously, in an autism or asperger DX, there’s a battery of psychometric tests.

    Perhaps in year 3000, we will have genetic tests to diagnose autism but there will still be psychometric for all the cases that genetics can’t account for (mitochondrial form of autism for example) and to assess the learning capability of autistic patients.

    Repeat after me: psychometric makes the world go round in autism :)

    Alain

  189. #191 Narad
    March 28, 2013

    There were 630 participants who completed phase 2 assessments and 618 who received ADOS-4 assessments; this isn’t your baseline, though. Strictly speaking, there were multiple weightings applied, so it’s not entirely clear to me precisely where the N = 2828 comes from.

  190. #192 lilady
    March 28, 2013

    @ sketiquette, You directed a post at me, which is *deserving* of a reply:

    “I’m not a big fan of appeal to authority, or the inverse: that if you are not formally educated in a certain scientific discipline(s) you can’t inform yourself and form a logical opinion. Sorry, this is the age of information.”

    Yet, ‘skeptiquette’, you claim that you, who is not formally educated in any science discipline, has actually read the many analyses of autism studies posted by Orac, including this one, and find them unsatisfactory. (I’ve read the many comments that you made on RI since 2009, and find them to be devoid of any science content, but loaded with rhetorical questions, i.e,. JAQing off.)

    PGP, thought you are pD’s sock puppet, because of your past history of posting right after pD.

    I suspect that it is you that didn’t read Orac’s post which carefully dissected this latest survey of childrens’ health issues….yet you posted (again) immediately after pD’s jumbled Gish Galloping, JAQing off post, with unalloyed praise of him, while accusing Ren of not reading pD’s post.

    “I stand by my opinion, I would take pD in my corner any day of the week over Orac. It is obvious who has a more thorough understanding of Autism and the related literature. I don’t care what his background his is, or that he is seeking self-arwarded degrees, I base my opinion on the merit of his writing and how it lines up with the extant literature.”

    Nice pretense there, from an uneducated-in-any-science- discipline troll, that you can even comprehend pD’s walls of words posts, on his blog and on RI.

    “I am in no way trying to diminish Orac’s abilities, just that he hasn’t spent much time digging into the actual science like pD has. Orac has focused more on the vanity affairs of autism science, which I find interesting to read and entertaining. If he did delve into the literature and wrote about it more often, we would all be smarter. Unfortunately, when it comes to autism science, these posts are few and far between.”

    I submit to you that you are clueless when it comes to the ability to understand the difference between Orac’s succinct cogent posts-versus-pD’s gibberish.

    “who is wise? One who learns from everybody”

    I suggest you question pD about why he has failed to learn from science bloggers.

    I suspect that Ren is NOT an Old Testament scholar http://www.chabad.org/library/article_cdo/aid/2032/jewish/Chapter-Four.htm but he has addressed this issue about learning his science discipline from every one…

    “…But I will tell you that there is something to be said about a person who takes the time to learn (from others, even) and then has his learning validated by experts in the subject matter, i.e. professors…”

  191. #193 herr doktor bimler
    March 28, 2013

    Orac’s succinct cogent posts
    This is the first time I have seen ‘Orac’ and ‘succinct’ used in the same sentence.

  192. #194 Politicalguineapig
    March 28, 2013

    PD: Over fourteen thousand homes were contacted by mail (sorted through 250+ counties or UK county equivalents or something), seven thousand ‘modified ASQ’ tests (‘do you like dates?’) were given to people in homes, 600 ADOS tests were given, and 19 diagnosis were given. That’s the point. They went to *a ton* of trouble to find people, and for some reason, their ratio of females was crazy off.

    I’ll accept the argument that women are undiagnosed. but you should see that this study was designed to catch them, and it did not. How much this bothers you, if at all, depends on how you feel about trusting that all of the increase is imaginary and then being wrong.

    See, thing is, I know that if I took the survey, I would register as neurotypical, even though I’m not. My friend with Aspergers could easily skew the survey too. I think you’re taking it on faith that the people who took the Brugha questions didn’t attempt to game the system a little. Also, see my point about genetics-a survey attempting to find colorblind individuals would also have a very skewed gender ratio.

    Sciencemom: You may be right, and I may have been hasty in pronouncing skeptiquette a sockie. I still suspect that she and PD know each other off line.

  193. #195 lilady
    March 28, 2013

    Orac’s logorrheic cogent posts. :-)

    Where were you Doktor Bimler, when we were discussing the classic regressive autism male/female 8:1 ratio?

  194. #196 Alain
    March 29, 2013

    According to the ASSQ (original test, not the one by Brugha et al.), I’m neurotypical even when the threshold is set to 26 to screen in the general population because I scored significantly below the threshold.

    source: http://www.autismresearchcentre.com/arc_tests

    Alain

  195. [...] Autism prevalence is reported to be 1 in 50, and the antivaccine movement goes wild…again [...]

  196. #198 passionlessDrone
    March 29, 2013

    @politicalguineapig –

    What does the fact that both you, and alain can take the ASQ (or original, ASSQ), and score neurotypical range tell you about the specificity of the tool?

    Lets accept your hypothesis for the moment that people gamed the system when taking the ASQ. Does this have any effect on our confidence of the findings?

    @Lilady –

    Regarding a classic regressive autism ratio of 8/1, I am afraid you are rather clearly illustrating how much you have yet to learn about the subject matter. The ASQ/ASSQ is designed to capture high functioning autism, that is a much, much different condition that classic regressive autism.

    @Alain –

    Narad can’t figure out where the N=2828 comes from. Can you?

    Here is a link to the paper:

    http://archpsyc.jamanetwork.com/article.aspx?articleid=211276

    Take a look at figure 1.

    14532 addresses selected
    1371 eligible addresses
    7461 productive responses
    7403 phase 1 interviews (i.e., do you prefer reading fiction?)
    5102 eligible for phase 2 (they do / don’t prefer fiction)
    849 selected after ‘selection probabilities applied’
    618 ADOS-4
    60 phase 3 interviews.
    54 completed ADI-R + DISCO
    19 diagnosis made

    If you think the ‘valid’ values are 19/2828, maybe you could share with Narad where it comes from? [Note: that value isn't 1% either]

    Your guess is as good as mine is as good as Narad’s as to where 2828 comes from.

    As noted by Narad, there were, ahem, ‘multiple weightings’ applied, and some of those weightings were based on how you responded to the ASQ. Considering the fact that you and politicalguineapig have expressed that you completely fail to register on the test, how much confidence do you put in the results of these multiple weightings?

    The test given was not the ASSQ, but a ‘modified ASQ’, which is designed to detect high functioning autism.

    I have not studied psychometrics.

    Finally, you asked at one point, a better way to performing this type of test. How about, go give 2000 ADI-R + DISCOs, to a random population and see what you numbers look like without a series of weightings; without relying on something designed to capture high functioning individuals? It would be expensive and time consuming, but if you are a proponent of psychometrics, this would be a way to achieve much more solid values.

    @Ren –

    Take a look at the actual questions given by the ‘modified ASQ’ that I posted above. The answers on this test helped inform the ‘selection probabilities’ made. Yes the parent of this test, the ASSQ, has been tested in some populations for identifying high functioning autism, but this was a scaled down test. If the rest of your methodology is great, but your initial filter is poorly constructed, does this allow us any insight into the eventual conclusion?

    In fact, I may even wager that you are confusing it with incidence

    Replace prevalence with incidence, in that case.

    What has been reported, again and again, is that as a percentage of the population, the autism rate is increasing in children. I think you understood that this was the heart of my concern, but perhaps not.

    The question isn’t the size of the bucket, but how fast is water being poured into it?. Birth rates are largely stable, at least in the developed world, but the ratio of children without autism to children with autism keeps on changing and in the same way, upwards.

    To be sure, diagnostic shifting has played a part in this. How much? Who knows, but the default answer seems to be: ‘all of it’, or lately ‘all but a “small amount”‘, whatever that means. I think that is a dangerously comfortable road to tread.

    For me to just quickly state that there’s a deluge going on is somewhat irresponsible.

    If you can point to a place where I have stated that there is a deluge, or an epidemic, please point it out; I will either claify, or retract it. What I am saying is that the ramifications of a real increase should be making us question, very seriously the concept of a stable rate of autism.

    Your point regarding the problems with data aquisition in the hantavirus analysis are well taken; it reminds me a little bit of the wild variations in state by state autism numbers. They are a total mess. Mashing them all together we get 1% (or used to!), and Brugha gets 1%. But is this really sufficient to argue that autism rates are stable? Or is it a cow-pie / apple-pie mixture?

    Even if they went through a ton of trouble to find households in England, we cannot say with any degree of confidence that the results would be extracted to, say, Iowa.

    If we cannot say that the England households can be extracted to housholds in Iowa with any degree of confidence, then Brugha wouldn’t appear to provide a good basis for a declaration that autism rates are stable in American children. Yet, this is exactly what happened on SBM and here; Brugha is held up as ‘proof’ of stable rates of autism. There was no skepticism toward this preferred conclusion, no acknowledgement that these findings shouldn’t be translated to New Jersey children, but a lot of high fiving over another chance to illustrate how silly the AOA crowd is. If you have a problem with the way that I examine evidence (an assertion I would disagree with, but only with too much verbosity for this post), at least it would seem that I have plenty of company.

    – pD

  197. #199 I. Rony Meter
    March 29, 2013

    “The ASQ/ASSQ is designed to capture high functioning autism, that is a much, much different condition that classic regressive autism. ”

    Really, now? Perhaps you should review the life history of Stephen Shore. He underwent autistic regression and now has a Ph.D..

    If you want to claim that regressive autism = “low functioning” autism, especially decades later, present data which supports your claim.

  198. #200 I. Rony Meter
    March 29, 2013

    Is it possible there is a “true” increase in autism prevalence? Yes. Did the vaccine contingient send people looking in the wrong places for years? No. Is a lot of verbage claiming that it’s all inflammation pursuasive? No.

    Simple enough?

  199. #201 Ren
    March 29, 2013

    “an assertion I would disagree with, but only with too much verbosity for this post”

    Now you’re going to worry about verbosity? It’s kind of late for that, bud.

  200. #202 Alain
    March 29, 2013

    Direct from the paper:

    Nonresponse bias was investigated by comparing the proportion scoring 13 or greater on the AQ-20 in the 5 regions with the highest response rate and the 6 regions with the lowest response rate in phase 1: it was 1.1% and 1.2%, respectively; using weighted data, it was 1.1% and 1.3%. Refusal to take part by participants selected for a phase 2 interview was 24% overall: the proportion of those who refused and scored 13 or greater on the AQ-20 was 24.3% among individuals with an AQ-20 score of 0 to 12 and 23.3% among those with an AQ-20 score of 13 to 20.

    I can see where the statistical manipulation lowered the odds of having a diagnosis and furthermore, the modified ASSQ is published there:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3076581/

    And it doesn’t have the actual test.

    I stand by my conclusion that autism is underdiagnosed in the adult population.

    Alain

  201. #203 Alain
    March 29, 2013

    Finally, you asked at one point, a better way to performing this type of test. How about, go give 2000 ADI-R + DISCOs, to a random population and see what you numbers look like without a series of weightings; without relying on something designed to capture high functioning individuals? It would be expensive and time consuming, but if you are a proponent of psychometrics, this would be a way to achieve much more solid values.

    8 to 10 years. that’s what it would take if I handled this as the solo psychiatrist diagnosing autism but it can be shortened to 2 or 3 years if I had 4 psychiatrist (myself included) involved in the project.

    3 days to diagnose, 1 day for research work and 1 day for clinical work.

    Alain

  202. #204 lilady
    March 29, 2013

    pD posts back at me…

    “Regarding a classic regressive autism ratio of 8/1, I am afraid you are rather clearly illustrating how much you have yet to learn about the subject matter. The ASQ/ASSQ is designed to capture high functioning autism, that is a much, much different condition that classic regressive autism.”

    Sweet Jeez pD, you really have a serious reading comprehension problem. Here, my post at # 161 above…

    lilady
    March 27, 2013

    (Watch for the anecdote)

    When I first got involved in advocacy more than 30 years ago, I met a number of parents and their children who were diagnosed with (regressive) “classic” autism. The parents all spoke about the ratio of males/females (8:1) who had the clinical diagnosis of autism…so that ratio that they spoke of, has been *around* for more than 30 years.

    I found this article that offers up some history about the sex difference ratios and opinions about that ratio…

    http://questioning-answers.blogspot.com/2011/03/sex-ratio-and-autism.html

  203. #205 lilady
    March 29, 2013

    There’s a new study out today, in the AAP Journal, Pediatrics.

    Matt Carey, at LBRB, has a great post/analysis of the study “that should be” the final nail in coffin of the “Too Many Too Soon Vaccines” *theory*…

    http://leftbrainrightbrain.co.uk/2013/03/29/autism-risk-not-increased-by-too-many-too-soon/

  204. #206 Denice Walter
    March 29, 2013

    Oh lilady!
    If only nails and coffins could contain this unholy thing and be the death of it! But no…
    it will burst forth from its sealed casket like Uma Thurman in ‘Kill Bill’ and return to fight again,
    even if we put a stake through its evil, unbeating heart and it dissolves into a pool of quivering, undead flesh and tainted blood,
    it will arise from that pool of black blood-( as in ‘True Blood’)-to menace and drain us again,
    even if we put it on a ship and set it afire and set it out to sea as though it were a VIking burial,
    it’ll come back in conquering mode to pillage the gates of reason. Again. And again.

    That hypothesis is not dead. It is an immortal. It concerns the myth of eternal return. And the phoenix birthed from its own ashes. And Shiva dancing on the dwarf as the Universe dies and is recreated again and again.
    Resurrected like verdant Spring from the icy shards of dead Winter.

    And we’re stuck with it.

  205. #207 lilady
    March 29, 2013

    @ Denice Walter…I’m laughing my a$$ off with your post.

    http://eldriciv.blogspot.com/2009/11/dara-obriain-quotes.html?zx=ef0147290786c081

    Dara O’Briain Quotes…

    “I get a little p!ssed off when people say that crime is going up when the numbers are *definitely* going down. And then if you go “but the numbers are going down” they go “but the *fear* of crime is rising.” Well so what? Zombies are at an all time low level but the fear of zombies could be incredibly high. That doesn’t mean we need to have government policies to deal with the fear of zombies.”

  206. #208 MH
    March 30, 2013

    Contrary to what some may think, the “big pharma shill gambit” is not old and it’s very disconcerting.

    The Center for Disease Control and Prevention (CDC) is given the responsibility of analyzing vaccines created by pharmaceutical companies before being distributed and promoted to the public, setting the childhood immunization schedule, and tracking the possible side effects. However, having them evaluate the safety of their own recommendations is not only awkward for them, but also a conflict of interest.

    Approving and promoting vaccines only to have them recalled for harmful implications and health concerns has occurred numerous times. Investigators have looked into why these vaccines were given the “ok” in the first place, discovering that there are financial ties between vaccine companies and what is supposed to be an unbiased agency.

    In 1998, the CDC had to withdraw its recommendation of the rotavirus vaccine, leading to a four month investigation that brought to light the financial investments CDC committee members had to pharmaceutical companies producing the vaccine. The investigation found that the relationship between CDC’s Vaccine Advisory Committee and pharma companies included sharing a vaccine patent, owning stock in a vaccine company, being paid for research, receiving money in order to monitor vaccine tests, and funding academic departments.

    For these companies, creating a vaccine can cost around half a billion dollars. If they want to make any profit, they need a guaranteed market once it’s finalized. A recommendation from the CDC gives them that considering there are some school boards won’t even let children attend unless they’ve had CDC-endorsed vaccines.

    In the case of the rotavirus vaccine, it was pulled from shelves after reports that the vaccine was causing “an excruciating contortion where a child’s large intestine folds over the small one.”

    The CDC panel that recommended the vaccination was ultimately reviewed, and it was found that “four out of eight CDC advisory committee members who voted to approve guidelines for the rotavirus vaccine had financial ties to pharmaceutical companies that were developing different versions of the vaccine.” In no way should they have been allowed to sit on that review panel.

    One of the committee members who approved the rotavirus vaccine, Paul Offit, even stated, “I am a co-holder of a patent for a (rotavirus) vaccine. If this vaccine were to become a routinely recommended vaccine, I would make money off of that…[But] when I review safety data, am I biased? That answer is really easy: absolutely not.”

    However, Offit has had his research funded by Merck (one of the largest pharmaceutical companies in the world) for thirteen years. Merck even buys and distributes Offit’s publications to American doctors. As well, the chairman of the CDC’s Vaccine Advisory Committee, Dartmouth Medical School professor Dr. John Modlin, owned $26,000 in Merck stock at the time of the decision.

    The rotavirus vaccine is one example of the CDC’s vaccine inquiries with a “conflict of interest.” One of which being the recalled LYMERIX vaccine (to prevent against lyme disease) where members of the CDC had financial investments in the companies creating variations of the medication. It was also found that the CDC and SmithKline Beecham (a multinational pharmaceutical company) worked together on a lyme vaccination project.

    Not to mention how most of the CDC-recommended vaccinations in the 1990s contained a mercury-based preservative called thimerosal. Manufacturers had used thimerosal, which contains ethyl-mercury, as a preservative in multi-dose vials of vaccine. The vials allow needles to be inserted repeatedly and the vaccine drawn out, making them cheaper than separate packaged doses of the vaccine. Depending on the type of vaccines a child received during the period, a visit to the doctor in the 1990s may have exposed children to 125 times the mercury limit set by the Environmental Protection Agency.

    A draft of Dr. Thomas Verstaeten’s study also appeared to show that thimerosal might cause brain problems, stating that “increasing risks of neurological developmental disorders with increasing cumulative exposure to thimerosal.” It’s been found that children with the autism genes don’t possess the mechanism to detoxify their body of mercury. “Autistic infants who experience comparable exposure to mercury were completely incapable of excreting mercury through hair levels that might have been predicted based on the excretion patterns of the control infants…autistic children will retain significantly higher levels of mercury in tissue, including the brain, than normal infants.” (International Journal of Toxicology, 22:227-85, 2003)

    The CDC’s whole prerogative is to act as an unbiased third party, but numerous facts point to financial investments and personal interests trumping the social and legal responsibility they have towards conducting research and truthfully informing the public. Considering the potential ramifications that any vaccine or medication can cause, this is an issue that needs to be monitored and individuals need to be informed upon. If the agency is unable to carry out its purpose or live up to the operating standards that’s required, then reform it, re-employ it, or start anew with one that isn’t conflicted with were it’s loyalty lies – to the public, not profit.

    Benjamin, Mark. “The Vaccine Conflict.” UPI. 20 June 2003: n.p. SIRS Issues Researcher. Web.
    Gale, Richard and Dr. Gary Null. “Vaccination: Federal Health Agencies Continue to Deceive Americans.” Global Research. 13 November 2009: n.p. Web.
    Goldman, Michael C., Dr. “Autism and Mercury Toxicity.” Web log post. September 2012: n.p. Web.
    Nash, J. Madeleine. “The Secrets of Autism.” Time. 6 May 2002: 46-56. SIRS Issues Researcher. Web.

  207. #209 Julian Frost
    NOYDB
    March 30, 2013

    @MH:

    One of the committee members who approved the rotavirus vaccine, Paul Offit, even stated, “I am a co-holder of a patent for a (rotavirus) vaccine. If this vaccine were to become a routinely recommended vaccine, I would make money off of that…[But] when I review safety data, am I biased? That answer is really easy: absolutely not.

    Offit voted to put a competing vaccine on the schedule, and recused himself when his vaccine was considered. His impartiality is proven.

    In the case of the rotavirus vaccine, it was pulled from shelves after reports that the vaccine was causing “an excruciating contortion where a child’s large intestine folds over the small one.”

    This turned out to be an exaggeration.

    Manufacturers had used thimerosal, which contains ethyl-mercury, as a preservative in multi-dose vials of vaccine.

    No, it is metabolised to ethylmercury, which is rapidly excreted by the body.

    The vials allow needles to be inserted repeatedly and the vaccine drawn out, making them cheaper than separate packaged doses of the vaccine. Depending on the type of vaccines a child received during the period, a visit to the doctor in the 1990s may have exposed children to 125 times the mercury limit set by the Environmental Protection Agency.

    The EPA regulations cover LARGE amounts of a substance and chronic exposures, not the miniscule amounts found in vaccines.

    A draft of Dr. Thomas Verstaeten’s study also appeared to show that thimerosal might cause brain problems, stating that “increasing risks of neurological developmental disorders with increasing cumulative exposure to thimerosal.” It’s been found that children with the autism genes don’t possess the mechanism to detoxify their body of mercury.

    Firstly, the miniscule amount of thimerosal in vaccines are not enough to cause problems. Secondly, the “poor excretor” theory is hogwash.
    Finally, I’ve had a look at your list of “sources”. Gary Null is a vitamin pedlar and quack who has been taken apart by Orac repeatedly. I’m not sure he’s even a doctor. One “reference” is over 10 years old; one is almost 10 years old.
    In short, we’ve seen your arguments numerous times before, we’ve deconstructed them numerous times before and we’re not impressed.

  208. #210 Krebiozen
    March 30, 2013

    MH,
    <blockquote.In the case of the rotavirus vaccine, it was pulled from shelves after reports that the vaccine was causing “an excruciating contortion where a child’s large intestine folds over the small one.”
    You mean intussusception? The current vaccine is not associated with an increased risk of intussusception, and the association between the withdrawn vaccine, Rotashield, and intussusception is by no means clear.

    Even if we accept the earlier and probably erroneous estimated adverse effects of Rotashield of 1 case of intusussception per 10,000 vaccinees, that would mean 430 extra cases if the entire US birth cohort of 4.3 million infants was vaccinated. Since vaccination would avert 14 rotavirus-associated deaths, 53,444 hospitalizations and 169,949 emergency department visits in the same cohort, the benefits of even the withdrawn vaccine greatly outweighed the risks.

  209. #211 Krebiozen
    March 30, 2013

    Oops. First paragraph should be blockquoted.

  210. #212 herr doktor bimler
    March 30, 2013

    It’s been found that children with the autism genes don’t possess the mechanism to detoxify their body of mercury.

    Citation: talking leprechauns.

  211. #213 Darwy
    Røde grøde med fløde
    March 30, 2013

    @MH

    Not to mention how most of the CDC-recommended vaccinations in the 1990s contained a mercury-based preservative called thimerosal. Manufacturers had used thimerosal, which contains ethyl-mercury, as a preservative in multi-dose vials of vaccine. The vials allow needles to be inserted repeatedly and the vaccine drawn out, making them cheaper than separate packaged doses of the vaccine. Depending on the type of vaccines a child received during the period, a visit to the doctor in the 1990s may have exposed children to 125 times the mercury limit set by the Environmental Protection Agency.

    Since the EPA has no set limit for mercury exposure via vaccines, I’d love to see your source for 125X the limit.

    If you’re trying to use the drinking water limit guideline, I’d remind you that you don’t drink 64 ounces of thimerosal daily, and that using that guideline is inappropriate.

  212. #214 Chris
    March 30, 2013

    MH, what is so funny about all the errors you made with the RotaShield versus the other two rotavirus vaccines is that the ACIP minutes are online. It takes two minutes to find them and show that the quote is off base, and Offit was not on the committee when RotaTeq was approved.

    It is bad those citations lie, but it is even worse when it easy to find the actual minutes. Like:
    http://www.cdc.gov/vaccines/acip/meetings/downloads/min-archive/min-oct06.pdf

  213. #215 Alain
    March 30, 2013

    I’d have to wonder where was MH when Sadie Burke said there’s no ghostwriting for vaccine because there’s no gain to be made and that vaccine are safe.

    Alain

  214. #216 Narad
    March 30, 2013

    Your guess is as good as mine is as good as Narad’s as to where 2828 comes from.

    I did at least take the straightforward step of dropping Dr. Brugha a polite note asking whether he might have the time to break out the calculation. He’s currently traveling (autoresponder), so it might be a while.

  215. #217 Krebiozen
    March 31, 2013

    I forgot to add this link to the source of the second set of numbers in my last comment. Also I’m not sure I made my point clear; the Rotashield manufacturer voluntarily withdrew its vaccine, and it looks now as if this did more harm than good. It took me a little while to get my head around this, but I find it quite interesting as another example of how the effects of vaccines can be unexpected.

    It is likely that rotaviruses increase the risk of intussusception (PMID: 23324817), and that Rotashield, a live attenuated vaccine, also increased the risk of intussusception within one week of vaccination. However, over a longer period, unvaccinated children would continue to be at a greatly increased risk of contracting a rotavirus and thus intussusception, as compared to vaccinated children, who had a slightly increased risk of intussusception immediately after vaccination, but a greatly reduced risk after that. Comparing the short-term effects of vaccines to the short-term results of not vaccinating can be very misleading – it is essential to look at the longer term to get a true picture of the balance risks and benefits.

    I also found it interesting that it was VAERS that alerted the CDC to the increased risk of intussusception:

    From September 1, 1998 to July 7, 1999, 15 cases of intussusception among infants who had received RRV-TV were reported to the Vaccine Adverse Event Reporting System (VAERS) (12). Of the 15 infants, 11 developed intussusception following the first of the three dose series and 12 developed the symptoms within one week of receiving any dose of RRV-TV. [...] Based on prevaccine data on the incidence of intussusception in the United States and based on vaccine distribution data, 14.7 cases of intussusception were to be expected within one week of receipt of rotavirus vaccine due to temporal association without causation. However, in light of under-reporting of vaccine-associated adverse effects, these data suggested an increased risk of intussusception following rotavirus vaccination.

    So contrary to the repeated claims we hear from antivaxxers that VAERS is ineffective as an early warning system because adverse events are under-reported, here’s an example of VAERS showing the expected background incidence of an adverse event, yet the vaccine’s safety was scrutinized precisely because this under-reporting was understood and expected.

    I think it would have been better (in terms of morbidity and mortality) for administration of Rotashield to continue until a safer vaccine was available. Instead, children were left unprotected for several years. This seems to me to be a case of over-cautiousness about vaccine safety putting children at risk, instead of protecting them.

  216. #218 Jen
    March 31, 2013

    Alain, here’s another “Sadie Burke” who suggests there are problems with vaccine ‘science.’ Perhaps the term pharma-shill describes some and then again there are those who are simply afraid to speak out.
    thinktwice.com/fraud2.htm
    I’m not so sure about ghostwriting having any gain or role to play with respect to vaccines either (there simply aren’t that many ‘brands’ of particular vaccines and the FDA approves them, they are mandated to the schedule and they are presumed safe (obviously narcolepsy and H1N1 was a recent problem).
    In any case if there is more pressure to report adverse events or true efficacy levels – such as the Canadian reports of flu shot efficacy not being too high, I think that’s a good thing for patients, I’m sure we can agree on that. Risk/benefit analysis is only as good as the data used.

  217. #219 Chemmomo
    Re 218
    March 31, 2013

    Jen, do you have anything that’s not just conspiracy theory?

  218. #220 Chris
    March 31, 2013

    Jen:

    the FDA approves them, they are mandated to the schedule and they are presumed safe (obviously narcolepsy and H1N1 was a recent problem).

    That was in Scandinavia. You do understand that the FDA only regulates in the USA, not in Canada or Europe. The FDA did not approve that vaccine because it was not used in the USA.

  219. #221 Alain
    March 31, 2013

    @ Jen,

    How come your source stay anonymous and invent political motives?

    Alain

  220. #222 Alain
    March 31, 2013

    Quote from that website:

    when you were once part of the Club. I know one or two people who were put under surveillance, who were harassed.

    I am part of a club, the club of autism researchers whose purpose is to create diversion among scientist so they don’t examine vaccine in all their details and the illness they causes instead looking for clues in neuroimaging and behavioral studies.

    I get paid about 60 000$ per years to do that, mostly by Astra-Zeneca who has a big presence in Montreal and I am glad for it.

    There will be autistic forever :D

    Alain Toussaint

  221. #223 Narad
    March 31, 2013

    Jon Rappoport with an anonymous source who claims that vaccine critics who “were once part of the Club” are harassed by the FBI? Way to go, Jen. You should go pick up a copy of his volume interviewing David Icke.

  222. #224 Alain
    March 31, 2013

    @ Jen,

    I’ll let you know if I am harassed by our canadian IRS and RCMP.

    Alain

  223. #225 skeptiquette
    April 1, 2013

    Ren,
    Sorry for assuming that you didn’t read pD’s post and “swatting at the hornet’s nest” a couple times. This was based simply on the one-liner you left him, not on the theoretical “breakfast chat” that we had. I fully respect the educational and professional achievements that you have made in public Health as an epidemiologist and I understand that it takes an enormous amount of diligence, time and money to earn a doctorate or master’s degree. Congrats on this accomplishment and best of luck.

  224. #226 skeptiquette
    April 1, 2013

    Lillady,
    I submit to you that you are wrong about me in many ways…

    For the record, I earned a degree in Medical Microbiology and Immunology from a top tier University. No master’s or doctorate, I don’t have the time now, but maybe in the future I will pursue a graduate degree. I’ve taken upper level courses in bio statistics and neurobiology, so you can take that assumption you made and you can probably figure out what to do with it…

    I did read Orac’s post, and I can see where he is coming from when he says that eventually the increased awareness and thus diagnoses will stabilize, which is when we will see the prevalence stabilize. This seems logical to me IF the increase in prevalence is only driven by something such as increased awareness or access to services etc. I also read that he was comfortable with the author’s reasoning as to why the prevalence increased.

    On the other hand, pD’s point that there may be an increase in prevalence that is getting masked and that consistently writing it off to increased awareness etc. could be detrimental to our children’s futures, because small percentages equate to a large amount of individuals—This also makes sense to me and this is what he was clearly arguing.

    In this epidemiological study they were able to capture info on when the diagnoses from the age subsets were made (in or after 2008 or in or Before 2007) and used the reasoning that since there were increases in the two older cohorts (10-13 and 14-17) that this was due to increase in awareness etc. I get it, since children are normally diagnosed between 3-6??(not sure of the high part of that range) then any diagnoses after this time frame, like 7 yrs old and greater, would mainly be attributable to increase in awareness etc. But if you take these people right out of the mix and add them back to the 2007 and before diagnosis of 2-13 yr olds, there is still a quarter percent increase which equates to about 10,000 children per year. Are all of these also due to better awareness?

    Ren, what do you think about the author’s reasoning? Is there a better way to correct or control for the confounding variable of increasing awareness etc.? thanks, if you answer.

    Again I would side with pD that: “What I am saying is that the ramifications of a real increase should be making us question, very seriously the concept of a stable rate of autism.”

    Lilady, the reason you may see pD’s posts as gibberish, is quite simply because you do not have the knowledge to understand them. To me they are quite clear and insightful and it comes across as pD clearly having a deeper understanding of the literature and science at hand and a special(above most people’s) ability to think critically. I mean seriously, we have had to explain some of the most fundamental concepts and you guys still argue against it! Remember when you guys argued that an immunization doesn’t cause an immune response because we are always exposed to antigens? This is a perfect example of the majority of you failing to understand basic science. How the hell would I expect you to figure out what pD is writing about? I absolutely wouldn’t!!

    But it is a bit irksome when you go swinging that rather large stick of arrogance of ignorance around and then on top of it pat each other on the back for a job well done. It is called a joke, and it’s on you, you just can’t recognize it precisely because you diligently pat each other’s backs and reinforce the nonsensical thinking.

    To be fair, I probably haven’t read all of Orac’s posts, the guy writes like a madman and I am busy, but I do read a fair majority.

    Lastly, my comment regarding appeal to authority was blown out of proportion and copious men of straw came a marchin’. Bottom line, appealing to authority and the inverse is called Fallacious reasoning, if your argument can’t hold its own, then forget it. And the inverse, if you can’t understand someone else’s argument then go educate yourself so you can or ask them nicely to explain what is not understood, don’t just go swinging in saying that he doesn’t have a degree and therefore said arguments are bunk.

    Note: above paragraph does not mean I think higher education is worthless (for those of you who like strawmen)

  225. #227 JGC
    April 1, 2013

    Not to mention how most of the CDC-recommended vaccinations in the 1990s contained a mercury-based preservative called thimerosal.

    My god, not the deadly mercury meme again…

    Manufacturers had used thimerosal, which contains ethyl-mercury, as a preservative in multi-dose vials of vaccine.

    Thimerosal does not contain ethyl mercury: following injection thimerosal instead <metabolizes and releases ethyl mercury, which is rapidly eliminated from the body (primarily by fecal excretion). In infants following vaccination ethyl mercury has a half-life of less than 4 days and blood mercury levels return to pre-vaccination levels by 30 days after vaccination. (see Mercury Levels in Newborns and Infants After Receipt of Thimerosal-Containing Vaccines, Pichichero et al, Pediatrics Vol. 121 No. 2 February 1, 2008 pp. e208 -e214).

    The vials allow needles to be inserted repeatedly and the vaccine drawn out, making them cheaper than separate packaged doses of the vaccine. Depending on the type of vaccines a child received during the period, a visit to the doctor in the 1990s may have exposed children to 125 times the mercury limit set by the Environmental Protection Agency.

    Those EPA guidelines, however, set limits of exposure for inorganic and methyl mercury, not ethyl mercury: because of its demonstrated low toxicity the EPA hasn’t found it necessary to set exposure limits for ethyl mercury.

  226. #228 Krebiozen
    April 1, 2013

    Skeptiquette,

    I mean seriously, we have had to explain some of the most fundamental concepts and you guys still argue against it! Remember when you guys argued that an immunization doesn’t cause an immune response because we are always exposed to antigens? This is a perfect example of the majority of you failing to understand basic science.

    Perhaps you can provide a link to this, “perfect example” of any of the regulars here making such an idiotic argument, or not understanding basic science or indeed a single example of you and pD having to explain “some of the most fundamental concepts” to anyone here. I don’t remember ever witnessing such a thing. Perhaps I missed it, but I somehow doubt it. However I do remember you misunderstanding some very basic science about the concentration of thimerosal that had to be explained to you repeatedly in increasingly simple terms before you managed to understand it, a few years ago. That was the same thread where pD came out with some rather convoluted arguments about the possible effects of a large number of vaccines (but not antigens per se, nor wild pathogens) on a child’s immune system.

    What if, instead, there are things we do not yet understand about a relationship between early life immune responses and long term, chronic neurologic dysfunction? What if, there are age dependent differences in how the immune system reacts to challenges, and the long term results mimic some of what see in autism? What if we found that the mechanism of action in these cases was dependent on components of the immune system that, it just so happens are highly increased in autism? What if, as I’ve been told, we don’t know what we don’t know?

    That’s a good example of the sort of “just asking questions” that Ren was complaining about above #155. My response to these questions is that if the answer to pD’s questions is affirmative, then contracting measles is far more likely to cause “long term, chronic neurologic dysfunction” than an an attenuated measles vaccine, and that one known cause of ASD is congenital rubella syndrome, which is prevented by MMR. We can also look at what happens to someone essentially without a functioning immune system, and see it is clear that even very young children with intact immmune systems are exposed to pathogens that their immune systems deal with quite effectively, and the great majority of them do so without developing “long term, chronic neurologic dysfunction”.

  227. #229 Calli Arcale
    April 1, 2013

    MH:

    One of the committee members who approved the rotavirus vaccine, Paul Offit, even stated, “I am a co-holder of a patent for a (rotavirus) vaccine.

    Rather notably, not the one under discussion. Which means that by your logic, he made a decision which was against his own interests by voting to approve a competing vaccine. I’m not really clear on how this supports your argument.

  228. #230 C.C.
    CA
    April 5, 2013

    in CA, it’s 1 in EIGHT Children & it is Not at Birth that it is discovered!

  229. #231 LW
    April 6, 2013

    1 in 8 children — what? What is not discovered at birth? Are you talking about autism? If so, citation required.

  230. #232 elburto
    April 6, 2013

    C.C. – [Citation Needed]

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