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A Call for New Studies on Autism

shadron

Philosopher
Joined
Sep 2, 2005
Messages
5,918
Scientific American publishes this article on a statistical study of autism; it finds that increased diagnosis and screening is not the major cause of the increase in disease frequency found in California, and calls for more basic research.

http://www.sciam.com/article.cfm?id=autism-rise-driven-by-environment&sc=WR_20090113

Several environmental possibilities are mentioned; vaccines only get a short paragraph of negative comment. The responses, however, are something else - they blame everything from "viral vaccines" (whatever they are) to Lyme disease to acetaminophen to ultrasound, and the parents appear to be absolutely certain about their findings. Their biochemical jargon is getting thick as well.
 
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1. It is likely a combination of many factors.

(A) Increase in diagnosis
(B) a Broadening of the definition of what is "Autism".
(C) In utero exposures and/or events
(D) Environmental Exposures.

2. I would love to see the ACTUAL STUDY, as opposed to a commentary/Report from SCIAM.

TAM:)
 
The whole movement from "autism" to "autism spectrum disorders" has got to be a major factor. A lot of children that formerly were considered to have learning disabilities, otherwise unspecified, are now considered to have an ASD. Further, high-achieving autistic people that previously were classified as "normal" but considered odd, are now diagnosed and labelled. (I personally believe that, had the push to diagnose been present in the '60's as it is today, odds are decent that at least one of us (me and my husband) would have been considered "borderline Asperger's" for not liking our classmates much. What we then called "bookish" or "nerdy" kids are now categorized as disabled.)

Add in that there are programs that will pay for assistance for your child if they are diagnosed with an ASD, but not if they have a less politically-adept disorder, and the incentives for both parents and providers to seek that diagnosis are high. I recognize that anecdotes do not equal evidence; but I have personally witnessed a desperate parent "diagnosis shopping" until her son qualified for support at school.

Autism (and its relatives) is a complex disorder, and seems to have a strong hereditary component. It may well have environmental triggers as well; but that still needs to be demonstrated. It would interest me to see if the gentleman quoted from the Autism organization would like to see money spent funding environmental studies for autism triggers that focussed on parental behaviors, such as hours of TV exposure during infancy, amount of focussed interaction with parents (as opposed to them talking on the cellphone, typing on the PC, jogging, etc).

It saddens me that these powerful interest groups are not supporting good science, only science that meets their preconceived notions. There is no way a reasonably educated person could look at the copious amount of evidence to the contrary and conclude that thimersol is implicated in autism. The removal of thimersol from vaccines has not lowered the autism diagnosis rate; the rates of diagnosis in countries that never used thimersol continue to rise. (apologies if I spelled that wrong)

There is a real medical issue in ASDs, and a lot of children who can be helped to become better adapted; to be happy, healthy, productive people in some cases, and happier, healthier, more fulfilled people in others. The human tragedy is not helped by the dysfunctional focus on a "cause" that has been discredited by numerous studies. How much faster could the actual cause(s) and treatments(s) for Autism Spectrum Disorders were targetted with all that PR and grassroots political power, instead of wasting it on "facilitated communication" and blaming vaccines?

Just terribly, terribly sad. Shaking my head, Miss Kitt
 
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1. It is likely a combination of many factors.

(A) Increase in diagnosis
(B) a Broadening of the definition of what is "Autism".
(C) In utero exposures and/or events
(D) Environmental Exposures.

Uh-huh. To quote from he article:

Hertz-Picciotto and Lora Delwiche of the UC Davis Department of Public Health Sciences analyzed 17 years of state data that tracks developmental disabilities, and used birth records and Census Bureau data to calculate the rate of autism and age of diagnosis.
The results: Migration to the state had no effect. And changes in how and when doctors diagnose the disorder and when state officials report it can explain less than half of the increase.
Dr. Bernard Weiss, a professor of environmental medicine and pediatrics at the University of Rochester Medical Center who was not involved in the new research, said the autism rate reported in the study "seems astonishing." He agreed that environmental causes should be getting more attention.
The California researchers concluded that doctors are diagnosing autism at a younger age because of increased awareness. But that change is responsible for only about a 24 percent increase in children reported to be autistic by the age
"A shift toward younger age at diagnosis was clear but not huge," the report says.
Also, a shift in doctors diagnosing milder cases explains another 56 percent increase. And changes in state reporting of the disorder could account for around a 120 percent increase.
Combined, Hertz-Picciotto said those factors "don't get us close" to the 600 to 700 percent increase in diagnosed cases.
That covers A;

The culprits, Hertz-Picciotto said, could be "in the microbial world and in the chemical world."
"I don't think there's going to be one smoking gun in this autism problem," she said. "It's such a big world out there and we know so little at this point."
But she added, scientists expect to develop "quite a few leads in a year or so."
The UC Davis researchers have been studying autistic children's exposure to flame retardants and pesticides to see if there is a connection. The results have not yet been published.
"If we're going to stop the rise in autism in California, we need to keep these studies going and expand them to the extent possible," Hertz-Picciotto said.
Funding for studying genetic causes of autism is 10 to 20 times higher than funding for environmental causes, she said. "It's very off-balance," she said.
...and that covers (or expresses a wish to cover) C and D. Leaving B, I suppose, and also genetics, which is also mentioned in the article.

2. I would love to see the ACTUAL STUDY, as opposed to a commentary/Report from SCIAM.
Yup. Wouldn't we all, provided we can handle the vocabulary and common understandings. Meanwhile, we have an indicator that such is probably available out here in the literature. Layman summaries do have their place.
 
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The whole movement from "autism" to "autism spectrum disorders" has got to be a major factor. A lot of children that formerly were considered to have learning disabilities, otherwise unspecified, are now considered to have an ASD. Further, high-achieving autistic people that previously were classified as "normal" but considered odd, are now diagnosed and labelled. (I personally believe that, had the push to diagnose been present in the '60's as it is today, odds are decent that at least one of us (me and my husband) would have been considered "borderline Asperger's" for not liking our classmates much. What we then called "bookish" or "nerdy" kids are now categorized as disabled.)

Add in that there are programs that will pay for assistance for your child if they are diagnosed with an ASD, but not if they have a less politically-adept disorder, and the incentives for both parents and providers to seek that diagnosis are high. I recognize that anecdotes do not equal evidence; but I have personally witnessed a desperate parent "diagnosis shopping" until her son qualified for support at school.
.

It saddens me that these powerful interest groups are not supporting good science, only science that meets their preconceived notions. There is no way a reasonably educated person could look at the copious amount of evidence to the contrary and conclude that thimersol is implicated in autism. The removal of thimersol from vaccines has not lowered the autism diagnosis rate; the rates of diagnosis in countries that never used thimersol continue to rise. (apologies if I spelled that wrong)

Thank you for such a thoughtful post. I realize that even here in the JREF, autism is a sacred cow to many, and ANY diagnoses of it must be correct, no matter how wide the net casts

It seems important to me, that we, as skeptics, step back from the PC rail a bit and have a real look at just how far of a net we want this thing to cover. As I was scolded for pointing out, I can't think of a single professional musician or name producer I have ever worked with that didnt fit "A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):"
from this page

http://www.autism-world.com/index.php/2007/08/14/the-dsm-iv-criteria-for-the-autism/
 
The, quoted, press release overstates the evidence http://www.theness.com/neurologicablog/?p=454

OK, let's summarize (if I may):

- The article says that while misdiagnosis may be a factor (120% is what they say) of the increase, it cannot cover the 6-700% increase in the past 15 years.
- The main axe to grind in the study appears to be an appeal to increase funding for study of environmental causes, perhaps at the cost of some current genetic studies. This contention is bolstered by the fact that the study is done by academic public health scientists.
- Steven Novella disagrees, but cites no material (at least on his blog) backing the contention that it is all in the misdiagnosis and changing definition; rather, he simply challenges others to prove that it isn't.
- Neither agrees with the vaccine hypothesis, rather vehemently, though since it would be classed as an environmental effect, that perhaps allows the anti-vaxers to cherry-pick and adopt some scientific wording from the study.

Question - autism is definitely a problem that the medical community seems to not be making much headway against. If there is a possibility that environmental causes may be a factor, should not some additional effort be made to study them? Or am I wrong about the medical science?

Question - It seems something of a non-sequitor to be arguing about whether an increase witnessed in he last fifteen years is real or not. No one is arguing that the disease is real. While it may be of epidemiological importance to trace the history, why is that such a big deal? This last would really stoke me if I had a child afflicted with autism.

Question - why in the world is the vaccine controversy being brought up in this? Everyone in the study and in its criticism has given it short shrift, for good reason. Why is it more than simply mentioned, and then plowed under? OK, perhaps political pressure has to be nodded to, but it's not scietifically fallow ground.

Judging from the responses to the article, science isn't being very responsive to the needs of the sufferers. I appreciate Mattus' webpage, but no one seems to be making the current science accessible to the sufferers, leaving an information vacuum that the crazies are only too willing to fill.
 
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I'm skeptical that anyone can say definitively that the increased autism rates cannot be "solely" explained by several factors that they acknowledge at least partially account for it. I hear this, but I don't ever see the numbers actually being crunched. It just seems to be someone's opinion about the degree to which the several factors are, well, a factor.

So I went looking for some numbers. I wish I had saved the links, but I got sidetracked and forgot to bookmark them. Anyway, what I found was that in absolute numbers the diagnosis for mental retardation went down almost exactly as much as autism diagnoses went up over a several year period immediately following the 1) the change in definition and 2) the addition of government funded support services. I did not find this data in an article discussing any correlation. It was just some basic data being reported along with other statistics - there was no "point" being made with the data.

Yeh, it's anecdotal on my part. Sorry. I plan on researching this again in the future. If and when I do, I'll post my results here.
 
Yes,

there exists a corrosive disconnect between the "medical establishment" and autism research. This, likely stems from arrogance, ignorance and bias. In the past few years neurological/autism research has practically flipped the long entrenched notion that autism is a "static encephalopathy" aqcuired prenatally, on its head (no pun intended). Current progressive medical hypothoses explore a much broader range of possibilities, including that kinda important thing called environment. From what I have gleaned from reading many journal articles and hypotheses in the field of autism, detoxification, nutrition, immunogenetics/immunology, vaccinomics, metabalomics, virology, etc. is that clearly the propensity for acquiring ASD postnatally is extant, and that ASD precipitates from a multitude of factors. i.e. no singular cause.

I think that the key to understanding Autism spectrum disorders is understanding the important concept of inter-individual variation, a concept often lost in the currently established paradigm of disease diagnosis and subsequent treatment. How the individuals genes interact with the environment makes all the difference in the world, and I assure you, if you are reading current med literature you may well be aware of this, but this will be the future (paradigm shift) of medicine. To qoute a prominent MD in the progressive movement of ASD, children with ASD are the "canaries in our environmental coal mine"

Patterns have emerged from ASD research that actually relate this disorder to many other chronic degenerative diseases, these patterns are: genetic polymorphisms(predispostition not determinant), nutritional deficiency, gut dysbiosis and permeability, toxic environment, increased oxidative stress, and impaired detoxification . Specifically, polymorphisms in the GSTP1(glutathione-S-transferase P1), MTHFR (methylenetetrahydrofolate reductase), and catechol-O-methyltransferase (COMT). Nutritional deficiencies can vary, but a common theme in Autistic children is gut problems which can clearly have pervasive (whole body) implications. Related to gut dysbiosis and permeability would be allergy food sensitivity and inflammation, which are more prominent in children with autism. ASD patients also have been shown to have a decreased ability to clear heavy metals and toxins including mercury. I will address the idea of vaccines causing autism in a later post, but for now I will say that there is medical evidence and some interesting hypotheses implicating vaccines and thimerosal in the regression to autism. To categorically dismiss a vaccine-autism link is just as preposterous (IMO) as categorically insisting that all Autism regressions are solely caused by vaccine administration, and to put it quite simply, these two contentions hinge on a level of ignorance which do not and will not facilitate any meaningful discussion into the topic. Anybody who is incredulous of the last point I made, do a quick bit of research into the Hannah Poling case, in which the government has awarded funds (to Poling's family) for ongoing medical care of an autistic child who was found to have mitochondrial dysfunction exacerbated by vaccines that left her with autistic behavior and seizures.


Patriot
 
Has anyone read the study yet? I'd have to chase it down in my university's library, and while I'm going to do that anyway, I'm definitely going to run into points too far beyond my education to comprehend.

Here's one issue right off the bat, posted here partly to catalyze conversation, and admittedly rhetorical to an extent because it's not possible to answer this definitively at the moment: I've read elsewhere that austim diagnosis rates are rising worldwide; the Autism Society's own web page features that factoid rather prominently. Since this study is restricted to numbers reported in California, how applicable do we think conclusions drawn from further research would be to the rest of the world? While it's not out of the realm of possibility, I think it's a stretch to say that environmental factors would also be the leading worldwide cause of rising rates. Again, this study only uses California reports. Furthermore, it's a reasonable presumption to say that environmental conditions differ across various locations. Yet, I feel that many people will indeed draw the conclusion that a leading cause of rising rates everywhere else is indeed an external, causative effect (environmental "toxins" or whatnot) from this study. And I'm trying to get thinking towards how applicable this study is, and what it indicates should be studied in other locations worldwide.

I'd love to see similar studies conducted in different countries, and then a meta-analysis applied. Sheesh... if only I were a billionare...

Anyway, question thrown out there as conversation bait: How do we think the tentative "suggestions" about causation might apply outside of California? Yes, there's no way to know for certain; I'm trying to jumpstart informed speculation here. It's still possible to learn from such, and many of you all are far more informed than I am on this subject.
 
Here is more on the topic by Steve Novella, who wrote the first article I linked. I haven't read this entry, I assume there is a lot of overlap.

http://www.sciencebasedmedicine.org/?p=340

That helped a lot! Thanks!

Couple of interesting paragraphs from that interpretive piece:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

My bolding. So the observed increases may not be an actual acceleration of the rate of autism occurring.

The key to putting this study into context is the phrase “other artifacts”. This study did not control for all possible artifacts resulting in higher diagnosis rates. Specifically, it did not address surveillance, which is likely the dominant factor. It also did not control for shifting diagnosis, diagnostic substitution, and dual-diagnosis. In other words, 20 years ago a child may have been diagnosed with a non-specific speech disorder, and today they would be diagnosed with autism. This specific form of diagnostic substitution was found by Bishop in 2008.

Another factor is that physicians, teachers, and parents have increased awareness not only of the symptoms but of the autistic label. How many parents who notice that their child is socially withdrawn are going to seek out services or medical attention?

This study did nothing to assess these potentially huge factors. So what this study really did was account for 10% of the increase in autism diagnosis. But it did not show anything about the other 90%, nor rule out the leading contenders for diagnostic artifact.

Granted, this analysis puts me one degree of separation from the original work (which I still need to read). But presuming it's correct - and upon this initial reading, it seems so to me - then it's even more interesting how this story will be spun.

As said before, I would really like to see similar studies done across different environments and countries. And I would very much hope to see what true trending emerges from meta analysis of groups of studies. It would be interesting to see what the remaining "90% increase" is really due to.
 
Here is more on the topic by Steve Novella, who wrote the first article I linked. I haven't read this entry, I assume there is a lot of overlap.

http://www.sciencebasedmedicine.org/?p=340

Ahhh, yup, about 100% of the original is in here. In fact, this appears to be the same article with a more elaborate introduction, and goes far to explain some of the problems I had with the original. He alludes to existing data concerning his position, which I don't doubt is there, and is compelling (about the best I can do as an engineer). He even explains this introduction as trying to overcome the willingness of antivaxers to dismiss too-simplistic explanations as the rubbish they are.

I still wonder why this seems to be some excuse to not study autism to some greater depth. Is it because the establishment has done some kind of return-on-investment calculaion that shows it's not worth it? Is it because he thinks research is running at full steam now, and further resources would be wasted? He's convinced that genetic research is the only valid viewpoint? Don't rock the boats?

Unfortunately, the question is not addressed.
 
To categorically dismiss a vaccine-autism link is just as preposterous (IMO) as categorically insisting that all Autism regressions are solely caused by vaccine administration, and to put it quite simply, these two contentions hinge on a level of ignorance which do not and will not facilitate any meaningful discussion into the topic. Anybody who is incredulous of the last point I made, do a quick bit of research into the Hannah Poling case, in which the government has awarded funds (to Poling's family) for ongoing medical care of an autistic child who was found to have mitochondrial dysfunction exacerbated by vaccines that left her with autistic behavior and seizures.
So the government decided to pay compensation to someone who had a known genetic defect that was already known could be set off by vaccination. Have I misunderstood? Mitochondrial dysfunction has symptoms similar to autism, yes? Is the argument that because the symptoms are similar, they must have similar causes?

I'm by no means an expert on this, but I've hung out on a few autism blogs lately and I was under the impression that this case was a big red herring.
 
I'm by no means an expert on this, but I've hung out on a few autism blogs lately and I was under the impression that this case was a big red herring.
Right. The award in the Hanna Poling case was made under the National Vaccine Injury Compensation Program. The VICP was created as a means of protecting manufacturers (and hence vaccine supply) by providing an alternative to costly litigation: a no-fault system which placed a much lower burden of proof upon the claimant. Not surprisingly, members of the vax=>autism camp immediately began trumpeting the Poling ruling as a "government concession" that a causal link exists -- which, in a sense, is pretty close to the opposite of what it actually was.
 
So the government decided to pay compensation to someone who had a known genetic defect that was already known could be set off by vaccination. Have I misunderstood? Mitochondrial dysfunction has symptoms similar to autism, yes? Is the argument that because the symptoms are similar, they must have similar causes?

I'm by no means an expert on this, but I've hung out on a few autism blogs lately and I was under the impression that this case was a big red herring.

The big point on this is that the decision was made to pay out in this particular case, rather than spend a lot of time and effort splitting hairs in court. The court did NOT decide that vaccines were responsible for the girl's problem. It was sort of the equivalent of a...mental blank, starts with an "H", plea -- in which you say, "I'm not admitting guilt, but I think a jury might find me guilty," or of a plea-bargain.

The anti-vaccine crowd are anxious to spin the case as being "proof" that They (the conspiracy of CDC/big Pharma/the AMA) know they can't afford to let the evidence come up in court--which is bogus. The big anti-vax line has been disproved by innumerable studies. Mercury preservative and the vaccines themselves have not been the "cause" of autism. They have not been the trigger of autism.

Exactly because this child's medical condition is so rare, and has so few knowns, and produces autism-like symptoms, it would be difficult to disprove the idea that vaccines contributed to, or exacerbate, her symptoms. Given the the court was willing to hear it, it's prudent to go for a pay-out without a decision of cause, and argue the point on a clearer case.

My heart goes out to families going through this; and it's a horrible thing to face. But the American worldview seems to now include something akin to, "A bad thing has happened! Someone else now needs to pay for it!" That's simply invalid.

Speaking to another comment on whether or not research is going on, lots of research is going on. It's just going on in areas where there's some strong evidence suggesting that research will be fruitful.

Right now, we have such a bewildering array of things included in "autism spectrum disorders" that what really needs to happen is to have Autism defined, and delineated, to a particular set of neural processing issues. That condition seems to have a very strong genetic component. When you get into "pervasive developmental disability" and such, though, you're overlapping with a lot of prior work on other forms of learning disability, and we don't have a clear path to work on. Unfortunately, the publicity and indignation--as well as the sensational fear-mongering--of the Enraged Parents has pushed the clamor for research well ahead of the clear path for research.

It's not easy to screen for environmental factors when you don't even know, reliably, who is and is not affected by a "disease". Untangling the increase in diagnosis from any possible increase in occurance is the logical first step; as is, in parallel, looking at concurrent medical problems, as has been posited for gut issues.

Again, the challenge is separating anecdote from evidence, and the very organizations that one would expect would want to lead the charge are encouraging obfuscation. It makes me very sad. It made me stop giving money to my preferred Autism charity, which merged with Autism Speaks (which is on record saying it will "not accept" any study that the CDC is involved with).

Just my thoughts, MK
 
Forgive me if this is posted elsewhere, but i have heard/read mention of there being anywhere from sixteen to twenty or so well conducted peer-reviewed studies that have discredited the whole vaccination/autism idea. I've read about many of them in recent years, but as i dig i can only find a few now. I was wondering if anyone knew of a place where i can find links to all or many of these studies? Preferably with some contextual reference on the issue?
 
Forgive me if this is posted elsewhere, but i have heard/read mention of there being anywhere from sixteen to twenty or so well conducted peer-reviewed studies that have discredited the whole vaccination/autism idea. I've read about many of them in recent years, but as i dig i can only find a few now. I was wondering if anyone knew of a place where i can find links to all or many of these studies? Preferably with some contextual reference on the issue?

A place to start: http://www.paul-offit.com/

Interesting articles/information along the right-hand side of the home page. His new book covers such studies in some detail.
 
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