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

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.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

232 replies on “Autism prevalence is reported to be 1 in 50, and the antivaccine movement goes wild…again”

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.

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.

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.

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.

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?

@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…

@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.

“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.

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.

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

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

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

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.

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.

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?

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.

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.

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.

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?

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.

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.

@ 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.

@ 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.

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?

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.

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.

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.

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

CD’s are digitally recorded music.

@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.

@I. Rony Meter:

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

@ 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.

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?

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.

…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.

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.

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”

@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

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?).

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

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*.

@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.

@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

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.

@ 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.

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!

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.

@ 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

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

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.

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.

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.

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.

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.

@ 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

@ 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.

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

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.

“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.

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.

@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.

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.

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

Think about it….

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.

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.

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! 😀

Shay– I KNEW IT! MUPPETS CAUSE AUTISM!!!! 😀

#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.

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/ .

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.

@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.

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