Years back (2007 to be exact) an autistic blogger wrote a piece “Moving Toward a New Consensus Prevalence of 1% or Higher“. In the late 1990’s, studies had come out showing a prevalence of about 1% in Sweden and, at the time Joseph wrote his piece, more studies had come out, this time in the UK, showing a prevalence of about 1% or higher. Since then we’ve seen multiple reports from the U.S. of 1% or higher, including a recent study claiming 2%. Also, a study in Korea claimed 2.6%, using a whole-population screen. Japan reports 1.8%. Back in the U.S., Puerto Rico is reporting 1.6%.
With all this, it comes as no surprise that a recent study out of Iceland would report a prevalence greater than 1%. In Prevalence of autism spectrum disorders in an Icelandic birth cohort, the authors report a prevalence of 1.2% of clinically confirmed autism. The data, discussed below, shows a clear indication that better identification has played a major role in this prevalence.
For ASD, many had intellectual disability, but the majority did not (click to enlarge). For childhood autism (autistic disorder) the opposite is true. The majority (72%) had ID.
Other health conditions were reported, with epilepsy being the most prevalent co-occuring condition (other than ID). Epilepsy was more common among those with autism+epilepsy compared to autism without epilepsy, as found in other studies.
The authors note that 1.2% is much higher than previously reported, and that the prevalence just for childhood autism is also higher:
In the present study, the diagnostic category of CA represented a relatively small proportion (28%) of the total number of cases, even if the prevalence is high (0.34%). This prevalence is 7.7 times higher than that reported in the first study on autism published in Iceland. [26] and almost four times that reported in a more recent study.[27]
citation [26] is: Magnússon GT. Athugun á geðveikum börnum á Íslandi: Börn fædd 1964–1973. (An investigation of psychotic children in Iceland: children born 1964–1973). Laeknabladid 1977;63:237–43.
Citation [27] is Prevalence of autism in Iceland, from 2001.
The prevalence numbers are climbing with time even within the cohort in this study. The authors note:
In a 4-year period, from the end of 2005 to the end of 2009, the prevalence of ASD in the cohort studied doubled, moving from 0.6% to 1.2%. This increase cannot be explained by immigration to Iceland, confirmed by the National Registry,22 and migration of people from one part of the country to another is irrelevant since the area studied and the whole country are the same. As expected, children diagnosed earlier (by 2005) were more likely to have CA than AS and were generally more impaired than those diagnosed later (2006–2009), although the groups did not differ regarding the frequency of ID and medical conditions. In order to examine symptom severity from another angle than diagnostic classification, we compared the earlier and later diagnosed groups on ADI-R total score. This comparison did not reveal differences between groups. High scores on ADI-R for those diagnosed later indicate serious autistic symptoms, possibly in association with co-occurring developmental and psychiatric disorders. Another point of interest is that the number of boys did not increase, contrary to what is suggested by some investigators.33 One interpretation of these results is simply that as the cohort studied grows older, more girls are identified with ASD,34 and because girls with ASD are more likely to be cognitively impaired, it would counteract the predicted trend for fewer children with co-occurring ID as the prevalence of ASD increases. Comparing the distribution of boys and girls in the group of children with ID (n=91) diagnosed earlier or later with ASD revealed some support for this hypothesis, as the gender ratio was 2.8 and 1.2, respectively, although this difference fell short of statistical significance.
The prevalence doubled from 2005 to 2009. Doubled. This for kids who were born between 1994 and 1998. In 2005, the kids in this study were 7-11 years old, and over the next few years the fraction of those kids identified as autistic doubled. For critics of the idea that better identification is a major factor in prevalence increases, I await your explanation of this. Actually, I don’t await your explanation as this is not that surprising a result. Better identification, worldwide, has (and still is) a driving force behind increases of autism prevalence.
Here is the abstract (the full paper is online as well):
OBJECTIVES: A steady increase in the prevalence of autism spectrum disorders (ASD) has been reported in studies based on different methods, requiring adjustment for participation and missing data. Recent studies with high ASD prevalence rates rarely report on co-occurring medical conditions. The aim of the study was to describe the prevalence of clinically confirmed cases of ASD in Iceland and medical conditions.
DESIGN: The cohort is based on a nationwide database on ASD among children born during 1994-1998.
PARTICIPANTS: A total of 267 children were diagnosed with ASD, 197 boys and 70 girls. Only clinically confirmed cases were included. All received physical and neurological examination, standardised diagnostic workup for ASD, as well as cognitive testing. ASD diagnosis was established by interdisciplinary teams. Information on medical conditions and chromosomal testing was obtained by record linkage with hospital registers.
SETTING: Two tertiary institutions in Iceland. The population registry recorded 22 229 children in the birth cohort.
RESULTS: Prevalence of all ASD was 120.1/10 000 (95% CI 106.6 to 135.3), for boys 172.4/10 000 (95% CI 150.1 to 198.0) and for girls 64.8/10 000 (95% CI 51.3 to 81.8). Prevalence of all medical conditions was 17.2% (95% CI 13.2 to 22.2), including epilepsy of 7.1% (95% CI 4.6 to 10.8). The proportion of ASD cases with cognitive impairment (intellectual quotient <70) was 45.3%, but only 34.1% were diagnosed with intellectual disability (ID). Children diagnosed earlier or later did not differ on mean total score on a standardised interview for autism.
CONCLUSIONS: The number of clinically verified cases is larger than in previous studies, yielding a prevalence of ASD on a similar level as found in recent non-clinical studies. The prevalence of co-occurring medical conditions was high, considering the low proportion of ASD cases that also had ID. Earlier detection is clearly desirable in order to provide counselling and treatment.
—
By Matt Carey
Left Brain Right Brain 
This new study effectively eviscerates the common anti-vaccine tropes. The prevalence of ASD in Iceland (1 in 83 children in 2009) is comparable to that in the US (1 in 88 children in 2008, suggesting
(1) Thimerosal is not responsible for an “epidemic” of autism: The children in the study were born years after thimerosal was removed from pediatric vaccines in Iceland, yet (as in Denmark, Sweden, Canada, and California) the prevalence of ASD was much higher following the removal of thimerosal than before thimerosal was removed years earlier, and the prevalence continued to climb throughout the study period. Note that influenza vaccines, a potential source of exposure to thimerosal, are not recommended for children in Iceland.
(2) The “too-many-too-soon” and “the ever-expanding vaccine schedule” memes are also discounted: children in Iceland receive about one-half the number of vaccines administered to children in the US (not even counting the influenza vaccines that are now recommended in the US for children and pregnant women) but have essentially the same rate of ASD—and, moreover, the vaccines that are administered in Iceland are generally given a bit later than in the US. http://www.euvac.net/graphics/euvac/vaccination/iceland.html
(3) It can’t be MMR that is responsible—MMR administration remained unchanged as the prevalence climbed.
(4) It can’t be the dreaded birth dose of HepB vaccine: children in Iceland are not vaccinated against hepatitis B, on day of birth or otherwise.
Of course, the anti-vaccine arguments have been thoroughly undermined by the work of many independent research groups, but this study neatly packages the evidence and ties it up with a bow.
All good points.
Add to that the “it’s aluminum” idea. The Iceland study prompted me to finally write a response to the U. British Columbia ‘study’ claiming that aluminum in vaccines is causing an autism epidemic. They used the old Iceland data. One of their many mistakes.
I don’t see this study doing anything to the declarations made in the US. This study is simply incorporating milder cases into the original cohort, based on additional diagnoses made after the children became teens. This is apples and oranges. “Autism,” by definition, must be diagnosed in CHILDHOOD. Too many other issues can come into play, when individuals have the opportunity to partake in the veritable buffet of drugs, poor diet, lack of sleep, etc; these can all yield individuals who appear to have the symptoms of “Autism.” One cannot look at the birth cohort from Iceland, from 1994 – 1998, with diagnoses of “Autism” in 2005 (aged 7 – 11) of 57/10,000 (with a
TOTAL birth cohort of just over 22,000 children), then look at the same group, as teens, and state the rate of Autism skyrocketed. Further, the “skyrocketing rate” of Autism, even including these teen diagnoses is only 1/100; in the USA, we are seeing rates, by age 8, of 1 in 50 — TWICE the worst rate reported in the cohort of TEENS in Iceland! If the US were to follow Iceland’s lead and incorporate those teens in the US with only Autistic tendencies – the result would likely be a rate in the range of 1/39 or greater!!!
Any scientist with the capability for independent, critical thought would recognize this study, of a populous who received far fewer vaccines, later in life, is indicative of the harm done by even just a few vaccines, rather than a cause for celebration which somehow vindicates what the US has done to decimate the health of an entire generation of children…
Good example of fitting facts to a preconceived idea.
So, Iceland included “milder” cases of autism, but the U.S. 1 in 50 number doesn’t? (I.e. here is one of those important facts you are ignoring)
Go ahead and cling to the vaccine hypothesis. It’s a massive waste of time and effort.
In the US, the milder cases are not counted. Because that 1 in 50 number is taken from the Department of Education…If you had a child with severe Autism enrolled at a US Public school, you would know that they do everything in their power NOT to identify kids with the label of “Autism…” Thus, many, many children, who probably do have “Autism” go un-labeled in an effort to save the Districts’ $$$$…
Diagnosing my kid based on the fact that I disagree with you? That happens a lot here. Suffice it to say you are wrong.
the 1 in 50 statistic comes from this paper. Apparently you didn’t read it.
First, it is from the National Children’s Health Survey, not education data. More direct to your point, 58% of parents responded that their child’s autism was “mild”. That fraction is up from previous surveys (figure 3 if you wish to click on the link above). “Severe” autism accounts for 6.9%, per parent report.
Does it bother you that the people who gave you the information you are basing your views upon are misleading you? Because they are. Your own statements make that clear.
By the way, if you believe that educational data do not include “milder” cases of autism you are very much mistaken. CDC reports which rely largely (but note solely) on educational data have shown a shift to what many would characterize as “milder” autism.
By the way, I reject the idea that the measure of challenge an autistic experiences is well measured by IQ as, apparently, you are suggesting.
It’s interesting that you’ve so completely discounted the predominant anti-vaccine arguments that, I suppose, “even just a few vaccines” are so harmful that the “thimerosal done it,” “too many too soon,” “MMR,” “HepB,” and “aluminum” arguments can be discarded.
Please let your fellow travelers know.
One characteristic of a certain kind of thinking is the ability to claim to believe contradictory things at once. This study http://www.livescience.com/18171-contradicting-conspiracy-theories-mistrust.html talks about people who believed both that Princess Diana was killed by the British government and that Princess Diana had faked her own death. Similarly, some people are able to claim that MMR is _the_ cause of autism, that thimerosal is, and that too many antigens is, without acknowledging the contradiction.
@Matt, nobody “gave” me information, I do my own research. The 1 in 50 number is not exclusive to the research you posted; which, by the way, considers Iceland’s TOTAL birth cohort, not some subsection, thereof…Rather, I was alluding to the research done by ADDM in New Jersey, http://www.cdc.gov/ncbddd/autism/states/addm-new-jersey-fact-sheet.pdf. And the 1 in 50 number, resulting from the phone survey you linked excludes all children under hospital or institutional care — therefore is also not a real number (just as the ADDM result is not a real number, as it is based on educational data, as discussed, above…
Further, I never stated anything, regarding intellect and Autism; I am mother to a child with Severe Autism, who was written-off as “retarded” and in-educable. Her trajectory is not defined, nor limited by the estimation of the psychology “professionals.”
I have no need to discount the “predominant” vaccine arguments, because they are not even close to valid “science.” One cannot select one shot (or two) and look for an outcome driven by the administration of 32 shots (with as many as 9 shots administered on the same day: http://www.cdc.gov/mmwr/preview/mmwrhtml/su6201a2.htm ) over the space of baby’s birth and 24 months. Until the seminal study of life/death and overall health outcomes of completely un-vaccinated children born between 1996 and 2004 versus those fully vaccinated is done, we have no idea of the true impact of the US vaccine program. Any “scientist” who states the “science” is in, is addled…
The concept that a study in a relatively homogeneous population, like Iceland, where fewer vaccines are administered (12, between 3 months and 24 months: http://www.euvac.net/graphics/euvac/vaccination/iceland.html ), and they are administered later in an individual’s development proves anything for a diverse population receiving 3X the number of shots, earlier in life is laughable, not “science.”
“And the 1 in 50 number, resulting from the phone survey you linked excludes all children under hospital or institutional care”
No, it doesn’t. I happen to have the dataset open right now. For your information, there is not a large population of children in the U.S. in institutional care.
“(just as the ADDM result is not a real number, as it is based on educational data, as discussed, above…”
New Jersey uses both educational and medical information.
Click to access ss6103.pdf
If you wish to use ADDM data, pLease compare New Jersey to Alabama and explain why a states with the same vaccine schedule and roughly the same uptake have a 4x difference in reported prevalence.
Iceland. Fewer vaccines, no birth dose HepB. Removed thimerosal earlier. Basically the same prevalence as elsewhere. It’s only one nail in the coffin of the vaccine hypothesis. Find a time in the U.S. when our schedule roughly matched that of Iceland. Tell us what the prevalence in the U.S. was then. It was lower than 1.2%.
Go ahead and believe in the vaccine hypothesis. By your own argument, you don’t have the science to support your belief. It’s a belief. One not supported by the existing science and one that is quite damaging. I argue that there is sufficient data to discount the vaccine-epidemic notion. The ADDM. Data from countries like Iceland.
It’s long past the time to look elsewhere for answers.
I would love to know where you have the data, regarding the number of disabled US children partaking of State/ institutional care? I would argue there is zero data available…And, yes, this data set is estimated, “based on these weights,including all national estimates produced for this report, are representative of the
noninstitutionalized population of U.S.children”
Regarding why NJ data indicates a higher rate of Autism than Alabama; NJ has a Law requiring Autism to be reported
( http://www.nj.gov/health/fhs/sch/documents/autism_registry_law.pdf ). Regarding the bizarre report from Alabama, that Autism is on the decline in their fine, impoverished State; Alabama only reports on 1.0% of their population of 8 year old children, and only considers the health records (excluding access to the educational records, does make a difference – point to you, Matt) – for comparison, So, in one state, reporting is required, in another, less is more…Underascertainment of the number of children with ASD in Alabama has been ESTIMATED to be 16%. The question you should ask, is using appropriate statistical methodology, and discarding the outliers, why is the rate of Autism so high?
Regarding Iceland, the frequency of Autism 1%, compared with the rate of 2% in the US is statistically VERY significant – we have 3X the number of vaccines and at least 2x the amount of Autism!!! There was never a time when Iceland shared the exact same vaccine schedule (between different timing and different manufacturers, it will always be apples and oranges). However, there was a time, in the US, when Autism ascertainment indicated a similar rate of 1/110. This rate was reported, in the US, in 2006, for children born in 1998; these children received, gasp, 12 vaccines before 24 months of age! http://www.cdc.gov/mmwr/preview/mmwrhtml/00053300.htm . Hmmmm…
The thing is, as I pointed-out, above, there is NO SCIENCE, so neither of us, technically has a leg to stand on, regarding this issue. Hence the need for MEANINGFUL research to be commissioned and performed INDEPENDENTLY…
Let’s start with data. From the study which gives the 2% you are citing. Here is the number of kids identified as autistic as a function of age.
https://leftbrainrightbrain.co.uk/?attachment_id=12859
The prevalence for 17 year olds is about the same as that for 5 year olds. The survey was taken in 2011 and 2012. So 17 year olds were born as early as 1994. 5 year olds as late as 2007. Did the vaccine schedule change in that period of time? If so (and the answer is yes, you provided the link), why didn’t the prevalence change?
Why is the prevalence for kids born in the mid 1990’s about 2% in this survey, but about 1 in 110 in the previous study (which you cited)?
The reason is simple–autistics are still being identified even older autistics. The NSCH study makes that point clearly when they compare the prevalence for those identified before a given year (2007, was it?) and the total. So if you want to compare a study from 2007 to one in 2012, you are going to run into problems.
“I would love to know where you have the data…”
I have the survey used for the study–the National Children’s Health Survey. I have it on my hard drive after downloading it from the public use dataset website. There aren’t a lot of parents reporting that their children are in the hospital or institution.
What fraction of the population (especially children) in the U.S. is institutionalized, by the way? My state has shut down most of the developmental centers. If you are thinking there’s some big reservoir of autistics hidden from epidemiological studies by being hospitalized or institutionalized, I believe you are incorrect.
“Regarding Iceland, the frequency of Autism 1%, compared with the rate of 2% in the US is statistically VERY significant ”
Yes, it is. If they used the same methodology. Which they didn’t. You are the one claiming “Apples and Oranges” when it suits your conclusion, but not here?
“Regarding why NJ data indicates a higher rate of Autism than Alabama; NJ has a Law requiring Autism to be reported”
So? ADDM doesn’t rely on data reported to a central registration. They review individual records. They find that many individuals are autistic who were not previously identified. Is there an undercount in Alabama? I’m willing to bet on it. Sort of the point of me bringing them up. If you want to compare prevalence numbers from one place to another, make sure that you have an accurate number for each. Is there an under count in Iceland? Good chance of that since they are relying on reported cases and are not reviewing the entire population (note that ADDM doesn’t review the entire population either).
By the way, don’t hand-wave away the prevalence in Alabama by income. Sure, the median income in Alabama is lower than the national average. The median income in Colorado is higher than the national average, but the prevalence is low and not much different from Alabama.
If under ascertainment in Alabama is only 16%, that wouldn’t account for the 400% higher prevelance in New Jersey, would it?
No–there is a lot of science. You are discounting all that goes against your belief. If Iceland has a prevalence comparable to the U.S. and less vaccines, it makes a very strong argument that vaccines are not a primary driver of prevalence. If the prevalence is varying dramatically within the U.S., it is clear that the primary cause of the reported prevalence numbers in the U.S. is not driven by vaccines. There is no biologically sound mechanism by which vaccines cause autism proposed. There’s a lot of meaningful research. Why you aren’t accepting it is beyond me.
You are invited to take a look at the age distribution for the National Children Health Surveys above. Why, for data within the same survey, does the prevalence not change that much for kids given different vaccine schedules? The same flat distribution can be seen in the previous NSCH autism data as well as other surveys.
note–I edited this comment to fix the link for the graph
Here’s prevalence–number whose parents said the kid was autistic (k2Q35b) vs age
https://leftbrainrightbrain.co.uk/?attachment_id=12860
Pretty much 2% plus or minus for ages 5 to 17. I.e. birth years 1994–2007. Was the vaccine schedule the same for that time period? No.
http://www.chop.edu/service/vaccine-education-center/vaccine-schedule/history-of-vaccine-schedule.html
You might want to review the data for New Jersey. You would notice that only 19% of the children in that study were classified with autistic disorder. In other words, the majority of that population is what many would call “milder” ASD (PDD and Asperger syndrome).
New Jersey also has one of the smallest percentage with intellectual disability. If you look at Figure 4, you will see that for the most part the prevalence of autism+ID is about the same between states. New Jersey has a much higher prevalence of those with autism and no ID or autism and borderline ID.
So, if you want to make claims that Iceland is including so called “milder” cases of autism and somehow that makes the number less valid, using New Jersey as your benchmark for the U.S. is not a good idea.
I make no claims, regarding severity of Autism, other than to say severity does not necessarily dictate life outcome… My point was simply that the most mild cases make it to adulthood without being identified…Also that, as in my family’s case, Intellectual Disability is in the eyes of the evaluator; hence my daughter’s outcome despite being severely intellectually impaired (IQ supposedly below 65)…Further, Iceland’s rate, including THEIR ENTIRE BIRTH COHORT is still only 1%. Our rate, looking at less than 10% of any birth cohort, with only partial case history in a number of States, is at 2%. You can nitpick all you wish, you can point to any number of telephone surveys and parent reports, but the simple fact is that an entire generation of US children are sicker than ever and many thousands will never be able to leave home and live independent lives. Also, the rate of Autism in US is seen in CHILDREN, not adults – for instance, the State of California estimates that 85% of their citizens with Autism are UNDER 22. If the rate of Autism is and always has been 2% – please explain to the readers, where are the nearly 5M adults with Autism, in the USA, hiding?
I’ll let you know when I’m nitpicking. Hasn’t happened yet. It’s easy to try to downplay serious arguments as “nitpicking”. It’s harder to answer it directly. Can you point to where any of the vaccine-autism groups have called for a prevalence study to be performed on the adult population? I haven’t. I’ve asked their representatives in online discussions repeatedly for this and they always ignore the question. I’ve asked for it. ASAN has asked for it. Funny that those who claim an epidemic won’t ask for or support the very study which will answer their question–AND provide valuable information on the status of the adult population (what is working, what isn’t as far as supports).
So, Iceland has a national register and we have surveys. Just means different types of possible errors. The US number could be higher–or lower–since it is a survey. You understand that, right? I ask because the way you present your statement it implies you don’t. Or perhaps I misunderstood why you PUT A STATEMENT IN ALL CAPS like that. The number in Iceland could be lower…it could be higher.
How many full population studies have been performed in autism? Studies where they take a given group and screen everyone and determine the prevalence rate? One.
“State of California estimates that 85% of their citizens with Autism are UNDER 2”
The state of California makes no such estimate. Sorry. There is a HUGE difference between the number identified and the actual number. That’s the point of this whole discussion, isn’t it? Ever contact people at California DDS and ask these questions directly? I have.
“Autism is and always has been 2% – please explain to the readers, where are the nearly 5M adults with Autism, in the USA, hiding?”
Autistics aren’t hiding. Every time someone takes a closer look, they find that autistics were missed. Take a look at the UCLA/Utah autism project from the 1980’s. They missed a lot of autistics. Guess what, they had lower IQ’s than the ones who were identified. So the idea that “autism is obvious” and we’ve always had accurate counts is bunk. You even have admitted that today we aren’t identifying all autistics. Or have you forgotten the discussion of Alabama. Take a read about the adult prevalence studies that haven’t been performed. The first one in the US is under way right now. You are aware of the UK study where they found 1%, most of whom were never previously identified, aren’t you?
The whole “sicker than ever” point is a nice sound byte, but try to back it up with data. Tell me, how many kids die today of infectious diseases? Compare that to the number from, say, 1800.
“(dataset unavailable to those plebeians unable to afford SAS)”
One can make Excel work. I know, I’ve done it. Also, SAS makes a reader free. The combination of the free reader and excel works well. However, since you recognized an SAS graph, I assume you are no plebian.
“I find this (unavailable) dataset suspect; ”
Unavailable? Point. Click. Download. Or, one can look at the frequency table. Right there on the website. SAS reader. Excel.
In other words, you are throwing up a weak smokescreen. Address the serious problem with your hypothesis: how can you fit a flat autism prevalence with the idea that the expanding vaccine schedule is causing more autism?
” couching a question in a vague manner will (and likely does) ”
How vague is this: “What is the prevalence of autism by age in this dataset?” Not vague at all. What is the answer? “Roughly 2% over a 12 year span”. Again, smokescreen.
Flat prevalence over a time frame when the US vaccine schedule was changing dramatically. Sorry, the whole epidemic argument is that the prevalence has increased over time coincident with the changes in the vaccine schedule. The fact that the prevalence isn’t changing points away from the epidemic notion. Not vague. Simple. Just not what many want to hear. Or have been told.
“” The question did not ask if the parent was told that the child had a diagnosis or was diagnosed with ASD. Also, what is meant by “health care provider?””
Yep. And Kogen et al. tried to improve on that in the 2011-12 survey. They asked a lot of follow up questions. Like, what health care provider identified the kid. That’s my article for Monday, by the way. There’s a big question (in my opinion) that they unearthed. Apparently you are unaware of the changes made to the survey, so I would agree that Scheinkopf has addressed this better than you. Download the frequency tables. Take a look at the large number of follow up questions.
“Autism is and always has been 2% – please explain to the readers, where are the nearly 5M adults with Autism, in the USA, hiding?”
Do me a favor. Drop a comment to the IACC telling them of your support for an adult autism prevalence study. Surely you want to know the answer, right?
There are three possibilities to explain the increase in the reported rate
1) the true incidence is increasing
2) we are identifying more who would have been missed before
3) both (1) and (2)
As they are both open questions, the only responsible tactic is to assume both could be at play. We are doing a lot of work on causation, but very little on identifying adult autistics who have been missed. What does that buy us? The questions remain unanswered, the adults don’t get the services and supports they need and we don’t learn what we can from them about what services and supports we do need. We push that off until our kids are adults. That sounds like a very poor idea to me.
@Matt, regarding the telephone survey, performed to provide data to the 2007 National Survey of Children’s Health (dataset unavailable to those plebeians unable to afford SAS); I find this (unavailable) dataset suspect; couching a question in a vague manner will (and likely does) yield all manner of false positive responses, and these responses are not validated in any way with case or record review; I find Stephen J. Sheinkopf, PhD has already responded to this point far more eloquently than I can in the limited time available (original here: http://pediatrics.aappublications.org/content/124/5/1395/reply#pediatrics_el_46180 ):
Limits of Survey Methodology to Assess the Prevalence of Autism Spectrum Disorders
Stephen J. Sheinkopf, PhD, Assistant Professor of Psychiatry & Pediatrics
Brown Alpert Medical School
To the editor,
Kogan et al. [1] reported prevalence rates of autism spectrum disorders (ASD’s) to be approximately 110 per 10,000 overall (173 per 10,000 for boys) using parent responses to a telephone survey as part of the 2007 National Survey of Children’s Health (NSCH). These findings are quite provocative and underscore observations that ASD’s are diagnosed at a far higher rate than in the past. However, the field should be very cautious in using such findings to estimate the prevalence of ASD because of the form of the survey question and the lack of case confirmation.
The NSCH asked parents whether “a doctor or other health care provider ever told you that [your child] had the condition, even if he/she does not have the condition now…” The question did not ask if the parent was told that the child had a diagnosis or was diagnosed with ASD. Also, what is meant by “health care provider?” Thus, a comment by anyone that the parent sees as a health care provider such as, “Your child may have autism,” even in the context of a recommendation for an evaluation, could be interpreted as “yes” to this question. The vagueness of this question makes it impossible to estimate the accuracy of the results. The estimated point prevalence of children described as having “Mild” ASD in the survey suggests that a large proportion of children identified would at some point have received a diagnosis of PDD-NOS or, more generally, “autism spectrum disorder”. Because DSM-IV offers little specific guidance on appropriate symptomatic thresholds for PDD-NOS, this increases the subjective nature of the diagnosis and results in wide variation in diagnostic practice. There has clearly been a significant surge in awareness of and interest in ASDs in recent years. And for good reason, as these disorders are clearly far more common than was once thought, and thus represent a very significant public health challenge. However, it is precisely because of this high interest, and the highly charged nature of debate about the changing estimates of prevalence, that care must be taken to base estimates of prevalence on rigorous methodology.
The authors, while noting the limitations inherent in their method, nonetheless imply that the impact of these limitations is lessened because 1) their prevalence estimates are similar to previous surveys, 2) the demographic distributions are similar to findings from other CDC surveillance efforts, and 3) a past finding showing good sensitivity of parental report of various diagnoses in special education children. However, the observation that studies with similar methods (and thus similar weaknesses) show comparable results does not lessen the impact of these limitations. Further, other CDC surveillance reports have not yet used direct case confirmation, instead extracting information from medical and educational records. Finally, the observation that parental report is sensitive to diagnosis does not fully address the limitations of this study, which are as likely to result in problems of specificity.
Future research may very well indicate prevalence rates of ASD’s in the range of 1%, although, as with disorders such as schizophrenia [2], estimates will depend on the broadness of case definitions as well as the methods of ascertainment and case confirmation (see Baird et al. [3] for an example of methodological effects on prevalence estimation in autism). The methods reported by Kogan et al. make it impossible to adequately judge the accuracy of their findings. The authors do not provide evidence for the validity of the questions used from the NSCH, and it is therefore not clear that parental responses accurately reflect actual diagnoses. While large-scale direct case confirmation would not have been practical, it may have been feasible to assess the accuracy of surveys by conducting a relatively small-scale validity study to test the correspondence of survey results with formal diagnostic evaluation. The authors do acknowledge that “Data on the validity of parental report of developmental conditions are limited.” This is a critical limitation. It would seem prudent to directly test the accuracy of parental report prior to publication of such a high impact paper. Going forward, firm estimates of the prevalence of ASD’s should await findings from studies with direct case confirmation, and/or those that assess the reliability and validity of more indirect methods of ascertainment.
References:
1. Kogan, M.D., et al., Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007. Pediatrics, 2009.
2. van Os, J. and S. Kapur, Schizophrenia. Lancet, 2009. 374(9690): p. 635- 45.
3. Baird, G., et al., Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 2006. 368(9531): p. 210-5.
Conflict of Interest:
None declared
You are intimating that those identified before age 8 are less severe than those not identified until they are teens? Really?!
no. I am not intimating such a thing. Clearly.
‘Earlier detection is clearly desirable’…and so is adquate support for those who missed out on any form of early detection…
I wonder if LizP would be so kind as to expound upon this and provide some support for this claim. Also, why do you rely so heavily upon an inherently flawed collection method to tout a 2% prevalence?
“”Autism,” by definition, must be diagnosed in CHILDHOOD”
Autism (no scare quotes) must present by age 3. It can be diagnosed later. The average age of diagnosis has been falling but it is still about 4 years old. I.e. most autistics are diagnosed after the cutoff. There is nothing in the definition of autism stating that it must be diagnosed in childhood.
Were I to collect data, it certainly wouldn’t be via the hodge-podge methodologies embraced by the USA today. Science dictates a far more careful and well-thought-out methodology; sadly, all that is available is the random collection done by organizations with agendas which have disparate and sometimes sinister goals…The data I have available, today, in my own community puts the percentage of moderate to severe cases of Autism at a much higher rate, close to 3% – both horrific and tragic for the children, their families, and the world at-large…
And by moderate to severe, I do not mean individuals who can easily express themselves verbally or in writing; I mean individuals who need 24x7x365 supervision because they cannot adequately provide self-care and are incapable of being safe if left alone. There is a whole movement of fully capable adults who might have Spectrum challenges, who might struggle a little socially, but can observe and conform to social norms – these individuals, while facing challenges, can and do live independently, work for minimum wage or higher, and establish some form of meaningful relationship with the world-at-large…
Regarding Autism, by definition, it is a disorder which is identified prior to age 3. See the National Institute for Health’s National Institute of Neurological Disorders and Stroke, http://www.ninds.nih.gov/disorders/autism/detail_autism.htm . In the event there is a sudden onset, after age 3, but before age 10 you are diagnosed with Childhood Disintegrative Disorder. If you develop the symptoms after age 10, you would receive yet another label…
Yes, Matt, the SYMPTOMS of Autism must be present prior to age 3…
Yes, a point which you got wrong multiple times in this discussion.
You may want to read your comments before hitting send. “Sinister goals”? Wow.
And, making up data doesn’t help any discussion.
“Regarding Autism, by definition, it is a disorder which is identified prior to age 3. See the National Institute for Health’s National Institute of Neurological Disorders and Stroke,”
your link doesn’t say that autism needs to be identified prior to age 3. It doesn’t say that because your statement is incorrect.
“; I mean individuals who need 24x7x365 supervision because they cannot adequately provide self-care and are incapable of being safe if left alone. ”
That would be autism with moderate, severe or profound intellectual disability. Which is a sizable minority of autism, but not a majority.
I reject the attitudes where people diminish the challenges of others in our community. Statements such as “struggle a little socially”
I also reject the notion that an individual with autism and ID can not “form a meaningful relationship with the world-at-large”. I reject this notion from direct experience.
I reject both of these attitudes as not only inaccurate, but as divisive.
I’d recommend you take a bit of a break from this conversation. You were better at hiding your attitudes yesterday.
Matt, regarding the study of incidence, I agree. Research should be done. It should also carefully evaluate severity and, for adults, outcomes. In Florida, the Developmental Disabilities wait-list is nearly 12,000 individuals-long; the adults take precedence, leaving the kids waiting indefinitely for services (which causes many parents not to bother to apply). To qualify, one must be severely impaired – maybe a study of the Developmental Disabilities client-base and wait-list participants would identify some percentage of adults and children with moderate to severe Autism in a given State? Of course, like properly studying the effectiveness and outcomes of the vaccine schedule versus a vaccine-free control group; this research is unlikely to be undertaken because it only goes to prove how poorly we are doing in helping our citizenry, and does not offer a PhRMA target or excuse for cutting budgets.. Soooo, we are left with the inadequate data that is available..
” maybe a study of the Developmental Disabilities client-base and wait-list participants would identify some percentage of adults and children with moderate to severe Autism in a given State? ”
You just suggested that database is biased because many families with children don’t bother to sign up. Also, it would be biased in that one must be “severely impaired”.
“like properly studying the effectiveness and outcomes of the vaccine schedule versus a vaccine-free control group;”
Leaving a control group unvaccinated would be unethical. Vaccines work and the diseases can be quite severe. Working with those who reject vaccines is likely to introduce biases as well. It is not an easy study to put together. One must also justify such a study. At least where autism is concerned, there is a great deal of data pointing away from vaccines as a primary cause.
Matt, “Unethical,” from the point of view of tens of thousands of families is injecting into pregnant women, newborns, infants, and children, at needle-tip, a combination of known poisons, carcinogens, teratogens, mutagens, and neurotoxins. Therefore, there are tens of thousands of families who choose to opt-out – according to the AAP, 17,000 children a year http://pediatrics.aappublications.org/content/114/1/187 ! So, since they are already identified, there is the ready-made study cohort; for that matter, look at the Autism community, many parents with a child they perceive to have been vaccine-injured do not vaccinate their follow-on children (whom, based on the Autism is genetic crowd, should be at higher risk for similar health outcomes to their vaccinated siblings). I repeat, until the seminal study of life/death and overall health outcomes of completely un-vaccinated children born between 1996 and 2004 versus those fully vaccinated is done, we have no idea of the true impact of the US vaccine program. And BTW, if you wish to push for research into the number of, previously, unidentified adults with Autism in the USA, I say go for it! In the 70’s and 80’s, across the capitol city community in which I was raised, there were 4 people identified to have Autism and receiving services in our local institution (which also provided day-services); I know this, because my mother worked with those individuals on a weekly basis… So, for this city, with a population of 30,000, and the opportunity for free assistance, where were the other 596 souls with Autism?! In my class of 300 kids, there was 1 young man who might have qualified for an Aspergers label, though he never received any therapies and went on to college and has a career like the rest…
“Matt, “Unethical,” from the point of view of tens of thousands of families is injecting into pregnant women, newborns, infants, and children, at needle-tip, a combination of known poisons, carcinogens, teratogens, mutagens, and neurotoxins”
If you want to put words into my mouth, do it on another website. Seriously, you are pulling that cheap debate trick in two comments here. I guess we have moved past the discussion of facts. Sad, and predictable.
Liz, you say:
” “Unethical,” from the point of view of tens of thousands of families is injecting into pregnant women, newborns, infants, and children, at needle-tip, a combination of known poisons, carcinogens, teratogens, mutagens, and neurotoxins.”
Now you are putting your biases on show. You no doubt are aware that the concept of a “poison” or a “toxin” (or “toxicant” to be more precise” depends upon the cirumstances and the dosages? And that there is no evidence that what is in vaccines at the doses given is toxic?
And that vaccines may have constituents whose carcinogenic or mutagenic potential may not have been fully studied yet (which may be a problem, but is felt not to be one considering the tiny doses involved), but that describing them as you do as “known” carcinogens, teratogens and mutagens is therefore quite inaccurate and emotive, right? And remember that if vaccines were mutagenic and teratogenic then observational studies on infants born with congenital anomalies would have revealed links to vaccination in pregnancy, which has never been demonstrated, right?
Dingo – Since we have already, clearly, established that the research is significantly lacking, methinks you’re missing said point…Further, the old “dose makes the poison” argument kind of goes out the window, when we have absolutely no clue about the synergistic toxicity of administering nine shots containing varied and sundry ingredients into an infant on a single day…This is why research needs to be done, regarding the vaccine schedule as it is administered; not single (or even two) vaccines, in isolation. Regarding the ingredients, many have high ratings on their MSDS: You cannot argue that the ingredients are safe if they have never been investigated for their potential to be carcinogenic, mutagenic, teratogenic, neurotoxic, or poisonous; as is the case for many of the vaccine ingredients! Here is some, limited, information..
Compiled by vaclib, you can also visit http://www.scorecard.org to investigate chemical profiles;Information is found at EDF (Environmental Defense Fund) & MME (Mosby’s Medical Encyclopdia)
Ammonium Sulfate: EDF Suspected – gastrointestinal or liver toxicant
neurotoxicant
respiratory toxicant
Amphotericin B: MME definintion – “a drug used to treat fungus
infections. Known allergy to this drug prohibits use. Side effects
include blood clots, blood defects, kidney problems, nausea and
fever. When used on the skin, allergic reactions can occur.”
Aluminum: EDF Suspected – cardiovascular or blood toxicant
neurotoxicant
respiratory toxicant
More hazardous than most chemicals in 2 out of 6 ranking systems
On at least 2 federal regulatory lists
Beta-Propiolactone: EDF Recognized – carcinogen
EDF Suspected – gastrointestinal or liver toxicant
respiratory toxicant
skin or sense organ toxicant
More hazardous than most chemicals in 3 out of 3 ranking systems
On at least 5 federal regulatory lists
Ranked as one of the most hazardous compounds (worst 10%) to humans
Formaldehyde: EDF Recognized – carcinogen
Suspected – gastrointestinal or liver toxicant
immunotoxicant
neurotoxicant
reproductive toxicant
respiratory toxicant
skin or sense organ toxicant
More hazardous than most chemicals in 5 out of 12 ranking systems
On at least 8 federal regulatory lists
Ranked as one of the most hazardous compounds (worst 10%) to ecosystems and human health
Phenol: aka Carbolic Acid
EDF Suspected – cardiovascular or blood toxicant
developmental toxicant
gastrointestinal or liver toxicant
kidney toxicant
neurotoxicant
respiratory toxicant
skin or sense organ toxicant
More hazardous than most chemicals in 3 out of 10 ranking systems
On at least 8 federal regulatory lists
Phenoxyethanol:
EDF Suspected – developmental toxicant
reproductive toxicant
Less hazardous than most chemicals in 3 ranking systems
Polysorbate: EDF Suspected – skin or sense organ toxicant
Sucrose: refined sugar (when administered with Polysorbate/Tween/Triton X, found to cause the BBB junctions to open, allowing entry into the brain for poisons, virus’, bacteria, etc)
Thimerosal: ethyl mercury
EDF Recognized – development toxicant
Suspected – skin or sense organ toxicant
Tri(n)butylphosphate: EDF Suspected – kidney toxicant
neurotoxicant
More hazardous than most chemicals in 2 out of 3 ranking systems
On at least 1 federal regulatory list
“Since we have already, clearly, established that the research is significantly lacking”
Different conversation than the one I am in. Just because the research to support your position is lacking doesn’t mean that there is no research on topic at all. Quite the opposite. A lot of research has taken on the question of vaccine causation.
And here you’ve been arguing that you did all your own research, and now you site “vaclib”. You’ve been had.
And now we go into the toxin gambit. It’s a nice distraction, try to argue whether in the small amounts in vaccines, these chemicals are toxic. Toxic does not equate to causal agent for autism. It does make for good fodder for spreading fear and doubt about vaccines. I.e. it is a great tool for those who are against vaccination.
BTW, Matt, I hope you find a way to sway the IACC to perform your study AND mine. The Autism community could use both…
Matt – I understand you are firmly entrenched in the “Autism is genetic camp.” And in your life, this may well be the case. In my life, I have two children who share no genetic link, who suffered vaccine injury. Since my eldest was vaccine injured at 3.5 months, suffered every event on the Vaccine Information Statement, and finally ended up at the hospital, there is no doubt the vaccines resulted in the harm she suffers; this said, maybe if somebody had bothered to ascertain her metabolic status (possibly genetic) prior to administering those vaccines, maybe they would have learned that vaccines posed a serious risk for her, and that she needed certain amino acids and particular B vitamins to be stable enough to vaccinate; so, but for the administration of the vaccines in the absence of critical metabolic support, she might not have spent her entire infancy, childhood, and now adolescence struggling to learn and cope. As for my other child, she received vaccines at 6 months and stopped breathing on the table before I could even get her dressed! The doctor resuscitated her and she was sent to the hospital, where they spent hours working to get her breathing properly; she checked-out with severe asthma (requiring round-the-clock, hourly treatment) and covered in eczema; she was also left with a learning/attention deficit. Since this date we have learned that the autoimmunity, which is rampant in my genetic pool put her at greater risk for an adverse event. While you wish to paint vaccines in the rosy glow of medical miracle, in our lives, they have been medical marauders. There is plenty of research out there, which you will undoubtedly ridicule (what is it about physicists confusing themselves with deities?), that indicates the need for thorough analysis (not reviews of studies done half-way). As mother to two children who live, daily, with the struggles placed into their lives by people with the cavalier view that what they don’t know is unimportant (and ignorant of the concept that they don’t even fully know what they don’t know), and what they think they might know is “science,” I can say with authority you need to get the heck off the pedestal you’ve commandeered and open your eyes to the on-going harm you are inflicting by casting a blind eye toward any view which differs from your own; particularly as you are tasked to participate on a team (the IACC) which has failed to slow, let alone halt the epidemic of Autism over the 9 years it has been in existence! The harm done to my children and tens of thousands of others is clearly spelled-out in the MSDS for vaccine ingredients and excipients, and in the prescribing inserts to which families are not generally privy. Vaccines can and do cause harm; otherwise their manufacturers would have no need for blanket immunity from responsibility for the harm they cause. As an educated individual, you should have the capacity for cogent thought and rational logic, but you consistently fall back on ridicule and finger-pointing – let me know how well that works for your child; as for the children of our Nation, the IACC continues to fail in their mission…
Matt, I have no desire to “hide” my views. And, frankly, my views are entirely reasonable and have yet to be dis-proven; when well constructed studies, using valid and appropriate study and control groups are undertaken, by an independent organization have been completed, we can debate the study structure and outcome – not before…In the meantime, don’t point to research from other countries, with different vaccines and a different vaccine administration schedule and try to tell me this research has any real bearing on the situation in the US. And don’t point to research looking at a single ingredient in a vaccine concocted of myriad ingredients and attempt to call this valid “science.” And don’t point to any other contrived study to try and make generalized points. When real research is finally done, maybe this entire debate with be moot; and God-willing, maybe we can stop inflicting a lifetime of struggle on our innocent newborns and infants…After all, while I understand you lovingly embrace your brand of “Autism,” but my daughter (who can finally talk after years of struggling to get words to form in her mouth) has told me she would prefer to be free of the 35 hours of therapy each week (which helps her to learn to be safe, take care of herself, learn new concepts, and develop all of the needed life skills; which is needed because the brain damage she suffered includes hippocampal sclerosis, which makes learning nearly impossible), able to make and keep friends (because it hurts to be included out of pity or because she is a fun target), and that she would really like to be able to play on the playground with her classmates without feeling nauseated, and having her muscles burn, and she wishes she didn’t have such a difficult time simply trying to not stim in socially inappropriate ways that make people look at her funny …So, not everybody values their Autism as their identity, rather many see it as a very high hurdle to overcome. While I am all for accommodation, community choice, and workplace inclusion – this should be the future of last resort for any child. For my children, I do not dream of limited futures dictated by DISability, reduced expectation, and forced acceptance; I dream of my children meeting their future ABLE to conceive their own dream and make it a reality – you?
You may see your views as reasonable. I don’t see the viewpoint that there are “sinister” people at work and that vaccines are “mauraders” (just to name two views) as reasonable. When there is good evidence to refute your ideas and poor evidence (or non-evidence dressed up as evidence), it isn’t a reasonable view.
One can reasonably adhere to an incorrect belief. That doesn’t make the beliefs correct.
“After all, while I understand you lovingly embrace your brand of “Autism,””
I don’t have autism. I don’t have a brand of autism. I have a child whom I adore. Autism is not my kid’s identity.
I hope for the same thing most parents hope for. That my child will be happy. I reject the assertion made by many that one who is disabled is by definition unhappy. Happiness is not a “reduced expectation”. It’s a pretty high expectation. Few really attain it. And when people who should be my kid’s ally paint my kid as something less due to disability, it is even harder.
Real research has been done. A lot of it, repeatedly answering the questions you pose.
You’ve asked me to support your cause…to support research by an “independent” group. Aren’t people funded by the CDC, NIH or other government agency not independent in your view?
LizP,
You’ve probably encountered “the arrogance of ignorance” as a derisive term to denote the propensity of some individuals to assume that expertise in some field somehow suggests that ability is transferable to other fields.
I mention this because, although I devoted decades to training in medicine, toxicology, and genetics, it happens that I was profoundly ignorant of a subject that once became important to me: when I had a chance—my only chance—to make a positive first impression, I confused the similar sounding Mandarin terms for “thank you” and “urinate.”
I’m not really a toxicologist, although I devoted years to performing, analyzing, and directing toxicology studies, but it seems to me that you’ve done something rather analogous here: in toxicological terms, you can’t tell the difference between “thank you” and “urinate.”
The difference between us is this: I have never, ever posted to correct experts in Mandarin, but you, in your profound ignorance, seem content to post or repost drivel related to the toxicology of vaccines.
Why is that?
” I understand you are firmly entrenched in the “Autism is genetic camp.””
Based on what, exactly?
You’ve jumped to an incorrect conclusion. You “understand” something that is incorrect. Read this blog and you will find that your “understanding” is wrong.
Here’s a comment where I addressed this same “understanding” before
https://leftbrainrightbrain.co.uk/2012/03/22/why-the-next-cdc-autism-rates-spells-bad-news-for-the-mercury-hypothesis/comment-page-1/#comment-56078
By the way, even if I were in the “autism is genetic camp”, that wouldn’t negate the fact that your arguments have been faulty and you have ignored clear evidence that is contrary to your beliefs. That’s not a discussion of science.
“There is plenty of research out there, which you will undoubtedly ridicule”
Ah, dismissing the other person’s viewpoints, yet again. You do that a lot. You build straw man arguments which are not on topic. Were I to do the same to you, you would rightly complain. Instead I meet your points with facts. Multiple facts. Which you ignore. Point to the evidence that I ridicule science. I am certainly critical of poor, biased and misleading work that is out there. But, ridicule? Not so much.
I wish you well.
Matt voting to fund poorly constructed environmental studies no more makes you a believer in environmental causes of Autism, than voting to fund the genetic studies makes you a believer in genetic causes of Autism. However, if it walks like a duck…You stand happily on the sidelines jeering at other’s efforts, while participating in experimental treatment (simply because it is called “clinical research” does not make it less experimental), for your child, yourself. You clearly wish the same as any parent for your child, and I applaud your desire for your child to be happy. It is my wish as well, but I add safe, and independent to my list; because I will not live forever, and she will have to carry-on is this heinous world without my protection, I seek to arm her with as many tools as possible to assure she can seek her happiness without such high risk of abuse as those left who are left in the care of the State. Further, it is my wish for parents of her peers, and those coming along after her, that they don’t even need to pause to ponder such risks for their children’s safety because we are going to prevent them having to overcome the many hurdles presented by the symptoms of this diagnosis!
I imagine the pro-tobacco lobby presented much the same resistance to the tobacco-is-causing-cancer crowd; you and your friends can condescend and quarrel ad nauseum, but until quality studies, answering the right questions, with proper controls have been undertaken it is simply so much noise. Sadly for you, the vaccines-are-doing-far-more-harm-than-good crowd is not going away; further, with more and more children suffering vaccine-injury with each passing day, our crowd grows larger and more vociferous. We are sick and tired of our children being sick and tired, and we vote. So, regardless of your estimation of our education, or our worth, you will be contending with our ilk for the rest of your Public career. Cheers 🙂
“I imagine the pro-tobacco lobby presented much the same resistance to the tobacco-is-causing-cancer crowd; you and your friends can condescend and quarrel ad nauseum, but until quality studies, answering the right questions, with proper controls have been undertaken it is simply so much noise.”
Actually, the folks like SafeMinds, Generation Rescue, etc are acting just like the tobacco companies did. They sow doubt, and write things that have a veneer of science but are not (the “Autism: A Novel Form of Mercury Poisoning” is one case in point). They have been invited to consult on studies with their criteria, only to have a hissy fit when the results did not prove what they wanted.
And it looks like you are waiting for a certain kind of study (vax/unvax), So instead of voting for some kind of politician, go and design the study you want. Make sure it conforms to the Belmont Report, get it approved by an IRB and then write a grant for funding. Submit that grant to Safeminds, NVIC, Generation Rescue, Autism Trust, etc for funding. And then get it done.
Enough public money has been spent on the “vaccines cause autism” goose chase. If you don’t like the studies that have done over the last fifteen, then fund them yourself.
Yes, you are right, why not simply construct a bunch of crappy studies which have no value in answering relevant questions, using truckloads of Public money, so that we can declare the “science is done.” Oh, yes, never mind, it’s already been done…Why would any rational scientist want to actually research an extraordinarily relevant issue, affecting millions of children annually, using a qualified study group and a true control group? That would be a waste of Public money; for sure.
Sad ending to the conversation.
Which is exactly why I am suggesting that the groups that find fault with the vaccines fund the studies. SafeMinds has provided funds to scientists like Mady Hornig, so why should they stop?
If you truly believe that vaccines are a causative agent in autism, then you would support having these organizations fund a study that you prefer. It is something I learned when I was part of the school PTA, if you wanted something done you start by becoming a committee chair and then recruit members. You usually end up doing it all yourself, but you get the job done.
So, LizP, get to it! Design that study! Get it past an independent review board! Write that grant (one PTA job I avoided)! Submit it for funding! If you want that study, then you should go and do it!
“Actually, the folks like SafeMinds, Generation Rescue, etc are acting just like the tobacco companies did.”
Indeed. One doctor who sold out to the tobacco companies later found a happy home as an antivaccine promoter (one of JB Handley’s favorites in fact)
“You stand happily on the sidelines jeering at other’s efforts”
Point out where I have jeered other’s efforts. Provide links. Otherwise this is just a cheap attack.
“I imagine the pro-tobacco lobby presented much the same resistance to the tobacco-is-causing-cancer crowd”
The difference there was that good evidence existed linking tobacco with cancer. There isn’t good evidence linking autism with vaccines, per your statements.
“Sadly for you, the vaccines-are-doing-far-more-harm-than-good crowd is not going away”
Yes, it is sad for me. As the parent of a medically fragile child, I do worry about the number of unvaccinated children and the parents who refuse to accept responsibility for their actions.
If an unvaccinated child contracts a vaccine preventable disease and spreads that, what liability does the parent face for a decision and action which put others at risk? None. rights come with responsibility. Except in this case.
“So, regardless of your estimation of our education, or our worth, you will be contending with our ilk for the rest of your Public career.”
What is my estimation of your education or your worth? Please, provide links? It’s easy to take cheap shots. As you’ve just demonstrated.
@Brian, Oh, owie, you gave me a boo-boo, I’ll have to go and cry now, because you are such a brilliant man and I am, clearly an ignorant rube. Boo hoo…
One thing I learned as someone who has presented analytical studies during design reviews and graduate class oral exams: you need a back bone. Always have the data available, never let the insults get to you, and never ever fight back with name calling. Or sarcasm.
So if you are going to propose something make sure you have the data in hand, and if it is not available: make sure you have a plan to get that data.
Chris, I guess the one thing you haven’t learned it the definition of sarcasm. I post data, I know my subject, and inane, off-topic, side-ways and otherwise disingenuous posts from holier-than-thou individuals do nothing to re-butt; sleight-of-hand is a lovely trick for a magician, not so becoming of individuals who claim to be science-minded. Quite frankly, this behavior is sickening when one realizes that tax dollars support the individuals spouting it, and further, that such individuals would be permitted to hold the reigns the Nation’s program charged with seeking answers and resolving the root causes…
You give a noble account of yourself. I guess this wasn’t sarcasm, but was data, knowing your subject, etc.:
“Oh, owie, you gave me a boo-boo, I’ll have to go and cry now, because you are such a brilliant man and I am, clearly an ignorant rube. Boo hoo…”
Chris, When the Federal and state Governments stop mandating every child partake of the veritable buffet of vaccines, i will be happy to drum-up my own funding to study them. However, since they are mandated, they should be proven safe and effective as recommended and administered (up to 9 shots, containing up to 12 vaccines, administered concurrently), from 6 hours of age through 12 years (currently at least 46 shots). Particularly in light of the Federal Government choosing to, virtually, abrogate citizen’s right to sue the manufacturer in Civil court, when an “adverse event” like death or permanent disability occurs as a result of following the mandates, yes I believe the onus is on the Federal Government to verify their Program of Vaccination is not doing more harm than good. In the event I am requesting funds for new uniforms for the football team, I will be sure to join-up with my PTA cronies and host a bake sale; you see, new uniforms are not mandated by anybody, and therefore should not be the responsibility of anyone but the football boosters to fund. You lot really ought to get your venues straight…
Just in case you struggle to find it, here’s a link to the current vaccine schedule: http://www.cdc.gov/vaccines/schedules/downloads/child/0-18yrs-pocket-pr.pdf
And Brian, one should not “urinate” on another’s imagined background and education…Whether my PhD is Harvard or Stanford, Toxicology, Epidemiology, Physiology, Biochemistry, Neurology, has no bearing on the crux of this issue – well constructed, relevant research, to address the single most critical issue, has not been done. Until it is done, your Movement will fail to accomplish its goal of vaccinating 100% of US citizens for 300+ diseases. Even a five year old understands, “because I say so” is never a good reason…
“Even a five year old understands, “because I say so” is never a good reason…”
But most five year olds don’t understand the term “non sequitur”. Apparently, neither do you. This sentence does not follow from your statement. At all.
No movement here. Just people who understand that people who spread fear, uncertainty and doubt about effective public health measures are not doing a public service. People who cling to ideas which even they admit have no scientific evidence while downplaying proven science are a problem, not safety advocates.
What Federal mandate? There is no federal mandate. States have requirements. And in most instances you can simply say, “I don’t want to” and you don’t have to.
If income tax was “mandated” like vaccines, no one would pay. That’s not a mandate.
By the way, you misuse the term “buffet”. If you are claiming that vaccines are mandated, it’s not a buffet (where one can pick and chose what one wants). But, as already shown, there is no federal mandate and the state “mandates” are not true mandates.
Vaccines are proven safe and effective. Each new vaccine must be tested as part of the vaccine schedule. It is monitored as part of the vaccine schedule. This is a common straw man argument.
What vaccine mandate? In my state you are still free to send you unvaccinated child to a public school. All you have to do is have the form signed by some medical person, including a naturopath, that you understand the risks. Oh, and keep the child home if there is an outbreak.
Personally I just wish those who get those forms signed by naturopaths would send their kids to their own special schools away from our kids with actual genetic medical contradictions. They should have their own “Special Snowflake School.” Oh, wait they do. They just preface the school name with “Waldorf.”
Seriously, what is your problem? What evidence do you have that vaccines are more dangerous than the illnesses. My kid had seizures from a now vaccine preventable disease, so who am I supposed to sue? The drug company because they were too slow to produce the vaccine to prevent that particular disease?
Actually, I helped with the band uniforms fundraiser, those things cost more than can be made with any bake sale. Just this weekend I put up one of the many banners I made from the old uniforms. By the way, the band is part of the music department, not the football program. The band also plays for other sports and marches in several parades in the region. (and no I will not provide the link… there is an NPR audio link where they mention that during this particular school’s lack luster football games the video cameras are on the band, not the football team… because the band is award winning good, unlike the urban sports team, so good many members are awarded jazz accolades in New York City).
You seem to be new the PTA culture. Trust me, it is brutal. The high school Band Boosters was actually more civil than elementary PTA. Apparently Queen Bee Diva Moms, like the granddaughter of a former state governor, decide to only pay private school tuition in middle and high school. i live in a small state, give me a break. Still, these people are annoying.
By the way, your federal government has shown that the vaccines are much safer than the vaccines. All you have to do is look at the evidence with an open mind. You can start with Vaccine Safety: Examine the Evidence.
Again, if you disagree with the results of those studies, please design your old study, make sure it complies with the Belmont Report and write a funding grant. Submit that grant to the aforementioned organizations and go do it!
Sorry, it is too freaking hot here on the American West Coast. I have had less than four hours of sleep because we don’t have air conditioning. Our Pacific Ocean air conditioning failed us.
Sorry about the typos. Nighty night.
Chris, I’m very sorry you had to struggle in dealing with the PTA. And very, very sorry your child “had seizures” from an illness. My child has non-stop seizures from receiving her vaccines, along with permanent damage to he hippocampus, and myriad other health, neuro-, and metabolic challenges – fine at the visit, at the hospital, then handicapped for life. In 1999, it was not common knowledge that vaccination can and does cause harm; and in less educated circles, the opportunity to opt-out is not known. As a matter of fact, we regularly receive threats from our schools that our children cannot attend if they have not got every single vaccine “recommended” by the CDC. If you do not know there is a legal opt-out, than it is not an option to vaccinate…Further only some states offer a philosophical exemption. I have a great idea, since you find raising funds and being PTA so difficult, why not form your own private school, where only vaccinated children can attend? Instead of requiring others to bear the burden of your convictions, why not create your own insular, “safe” (from your point-of-view) world? While my tax dollars are paying for the harm done to those who are harmed by the vaccine mandates, I vote for the harm to end…There are better uses for our tax dollars, and the human cost of vaccine harm is in-calcuable…
At least you had recourse with the National Vaccine Injury Compensation Program, about which you get on the Vaccine Information Sheet that you must be given by federal law since 1989. It is only your fault if you don’t read it. Unfortunately children who get injured from the actual diseases do not have that option, and a child is much more likely to get injured from the disease than any vaccine.
I don’t need to start a private school, since vaccination are required for attendance to public school. Plus proof of measles vaccination is required to attend the local public university.
The legal opt-out is printed on the vaccination form for the school district. And actually you could just sign it right there as you registered your child for kindergarten. So there was no way one could not know about the vaccine exemption, all you had to do was fill that part out instead of listing the vaccines (which no one checked). That law has changed, and now you have to get a doctor’s signature.
If you are getting threats from the school district when you have an exemption and there is not a vaccine preventable outbreak, then you might have a legal issue with them. Otherwise, if there is a vaccine preventable disease outbreak like chicken pox, then you need to keep your children at home.
And since vaccine preventable outbreaks occur more frequently in private schools with lax vaccine requirements your statement ” bear the burden of your convictions” makes no sense. Though you can submit evidence that a vaccine on the current American pediatric schedule causes more seizures than the diseases, you would have a real argument. But since the NVICP has compensated less than 3500 claims in over twenty years when billions of vaccine doses have been given to American children, I don’t think that evidence is coming soon.
Chris,
Actually, the VIS is designed to scare parents into accepting the vaccines, while assuring them there is virtually no risk to their child (especially since they will only add those items ACIP has researched and found a link-to, and ACIP purposefully avoids damning research), the VIS fails to fulfill the mandate for any medical treatment – fully informed consent. Here is the mandatory Vaccine Information Statement I was given for the DTaP she received at 3.5 months (she also received the HepB, the Hib, and IPV), it is uninformative and designed to give a false sense of security to parents: http://web.archive.org/web/20000815094447/http://www.cdc.gov/nip/publications/VIS/vis-dtp.pdf
Whereas, had I received the Prescribing Information, I would have been much closer to “fully-informed.” Particularly of-concern, my child is allergic to latex, and this is a contra-indication for using the vaccines as-supplied (not to mention her allergies to some of the other excipients and ingredients…): Even with the Prescribing Information, there is no mention of the risk of administering vaccines to children with metabolic dysfunction (highly hazardous to insult the system, if it is not properly prepared and balanced):
Click to access ucm101580.pdf
Further, there is has NEVER been a simple philosophical opt-out on school paperwork in the states of NY, TX, FL, NH, WV, MS, NV, NJ, MD, RI, MA, nor in many other states, so your point was (before the law changed) only valid in a few states…And does not apply at all, for most states, now…
Regarding the propaganda sent home from the schools – again, if you are not educated, nobody is going to tell you about the opportunity to opt-out; the pediatricians kick families out of their practices for refusal, and tell parents there is no other choice if they want their kids at school/daycare (this abrogates the families’ rights, as fully informed consent cannot be obtained under duress) – and since the propaganda from the school districts reads the same, families are forced to comply or left without any place for their children to go. And, until the Federal Law regarding the right to a Fair and Appropriate Public Education change, this is still EVERY American family’s right…
So, again, no fully informed consent for families who do not know their rights under the law = mandate.
I do not receive any “threats” from the School District, because my children are all MEDICALLY exempted because of the grievous harm they suffered post-vaccination (which is debilitating, lifelong, and as yet, incurable). Further, I find it humorous that un-vaccinated children are excluded from a school when there is an “outbreak” of a disease; I guess the brilliant policy-makers don’t understand that, by the time there is a full-blown case of any “vaccine-preventable” disease, every contact with said case has already been exposed; every disease has a period of incubation, where the body has yet to mount a full-blown response, the disease is multiplying, and the individual is actively and shedding the disease into his environment! This incubation period is at least a few days and up to months; so, excluding students, who were already exposed to the disease, after the symptoms arise is kind of illogical, don’t you think?!
As a real-life example: child 0, a student at our school, vaccinated against Chicken Pox, arrives at school on Thursday morning, by mid-day has developed a rash, he is sent home, he goes to the doctor’s office and is diagnosed with Chicken Pox. We are “notified” to stay home until the “outbreak” is over. By Monday, several students have been kept home by parents or sent home from school with Chicken Pox. On Wednesday, my fully vaccinated child had the Chicken Pox rash, by Friday, both of my un-vaccinated children had Chicken Pox, too. We scheduled a special “back door” visit with our pediatrician to record the disease on their medical record; she could not believe my un-vaccinated kids had Chicken Pox, because their rashes were widespread, but relatively mild and not oozing anywhere, and she was ready to tell me I was mistaken – then my fully vaccinated kiddo came in, and the doc said, “oh, yes, THAT’S Chicken Pox.” My un-vaccinated kids cleared their Chicken Pox in four days – my fully vaccinated child had the rash for two weeks! No trips to the ER were required, and the kids didn’t even complain about anything. And, a month after it all began (2 weeks after my kids were over their Chicken Pox), we were finally allowed to return to school. Where’s the logic? If the kids had and cleared the disease, why not let them back to school with the vaccinated kids who also had and cleared the disease?! And, why bother kicking them out, in the first place? They were no more a risk than the vaccinated kid who shared his Chicken Pox with the school; and apparently no more at-risk than the vaccinated kids at the school!!!
And, regarding the wonder of the NVICP – this is a program, established to ensure an adequate supply of vaccines, and to stabilize vaccine costs. It is supposed to also supposed to provide a no-fault alternative to the traditional tort system for resolving vaccine injury claims and provide compensation to people injured by vaccines. This program is under U.S. Department of Health and Human Services (HHS – the same organization which oversees the CDC, who recommends the vaccine schedule, the NIH, who support vaccine development, and the FDA, who approve vaccines for use, based upon studies of safety and effectiveness performed and presented by the manufacturer – no conflict here, NOT), and is run by the U. S. Court of Federal Claims, using their attorneys, as “Special Masters” to adjudicate claims, and more of their attorneys, and their own “Expert Witnesses” to “defend” the NVICP against the claims from those who are vaccine-injured. There is no jury, no discovery, and the DOJ attorney (Special Master) gets to decide whether your Expert Witness is an expert…Sure, THIS system is one engineered to assure the fewest awards possible; since 1988 just 13,571 claims have been filed, of these, 9,630 were dismissed by the Special Masters, odds are 3 in 4 that you will not be compensated for death or lifelong disability caused by the US Vaccine program…As a family that has waited 11 years for a hearing in this kangaroo court, I don’t hold out much hope for getting reimbursement for the nearly $1.5M our child’s vaccine injury has cost us, to-date, let alone recompense for what she and her family has lost…
“my child is allergic to latex, and this is a contra-indication for using the vaccines as-supplied (not to mention her allergies to some of the other excipients and ingredients…):”
That’s odd. You mentioned your child was OK in the short term after vaccine administration. Allergic reactions are short term.
“and the DOJ attorney (Special Master) gets to decide whether your Expert Witness is an expert”
DoJ attorneys are not Special Masters. Special Masters are judges in the court. DoJ attorneys represent the respondent (the Secretary of HHS). I.e. they are the “defense attorneys” in these proceedings.
Take a look at Mark Geier for an example of why some “expert” witnesses are deemed not credible. Then look at the “experts” used in the Omnibus Autism Proceeding. It’s sad. People deserve better.
Of course, the real problem is the hypotheses put forth, not the experts. The Omnibus showed that, clearly.
Chris, BTW, most private schools share the same requirements as Public schools. Also, the number of cases compensated by an attorney in the employ of HHS does not, in any way correlate to the number of people harmed by vaccines, all it takes is a quick visit to the DATA at VAERS, and I can show you 391 events where an infant, under age 3 died on the same day they got vaccinated (looking out 3 days, almost 1,600); and another 527 infants under 3 who were left permanently disabled (looking out 3 days, nearly 1,000), starting on the day they received their vaccines, as well. According to the CDC there is a problem with under-reporting of adverse events to the VAERS, so these are only some of the total adverse events that occurred, ON THE DAY THE INFANT WAS VACCINATED.
Just looking at the infants under 3 who were reported in the VAERS (which is thought to represent between 1% and 10% of all adverse events), I have already identified about 2,600 families who are, likely, eligible to claim; and I can identify another 3,300 by opening it up to add 3 – 100 year-olds, with disability or death within 3 days of vaccine administration; so, if these ~5,900 represent even 10% of immediate to within 72 hours injuries, we are looking at more like 59,000 who are out in the world (or buried) and unreported.- so your estimate of only 3,500 people with vaccine injury is sorely lacking and seriously mis-informed. Knowing the VAERS represents somewhere between 1% and 10% of all injuries, we are likely looking at between 150,000 – 1.5M Americans who are either dead or disabled courtesy of our vaccine program (derived from all claims of death and disability in the VAERS, 15,000).
“. Also, the number of cases compensated by an attorney in the employ of HHS does not”
Attorneys in the employ of HHS do not compensate people. Taxpayers of the US do. Those of us who vaccinate pay an excise tax on each dose, which is used to compensate people found by Special Masters (judges) to be more likely than not injured by a vaccine. In some cases, HHS, with advice from DoJ attorneys, decide this before going to hearing.
“According to the CDC there is a problem with under-reporting of adverse events to the VAERS, so these are only some of the total adverse events that occurred, ON THE DAY THE INFANT WAS VACCINATED.”
People often make this sort of misleading statement. Minor adverse events are much more likely to be under reported than possible serious injuries. But people like to imply that all under-reported events are serious enough to be permanent injury.
” I have already identified about 2,600 families who are, likely, eligible to claim;”
Offer yourself up as an expert to the petitioners. They sure could use better than they have now.
As to your estimate, it doesn’t make me believe that you would be better than the current crop of experts. You have done exactly what I described above–you assume that all unreported events are permanent injury or death. Bad assumption. Clearly a bad assumption. You then pull random numbers out and do some quick math to come up with a scary number. GIGO.
” Knowing the VAERS represents somewhere between 1% and 10% of all injuries”
How do you “know” this? Answer is, you don’t. It’s not a fact at all.
I do know, courtesy of the FDA, the 1% to 10% estimation is derived from the report on the Clinical Impact of Adverse Event Reporting…In particular, regarding VAERS, Rosenthal et al. found that, even for known disease symptoms, reporting is far from 100%: 22% (Rubella syndrome), 33% (Pertussis deaths), 40% (Tetanus deaths), with a high of 72% (for Poliomyelitis). And reporting rates, for symptoms, considered poorly defined clinical syndromes, or not generally recognized as symptoms of the disease, reporting was as low as 1% (e.g. Thrombocytopenic purpura); these “have significantly lower reporting sensitivities.”
Sorry, you didn’t supply a link. Are you referring to the Rosenthal paper discussed below
http://archpedi.jamanetwork.com/Mobile/article.aspx?articleid=517930
This “THE CLINICAL IMPACT OF ADVERSE EVENT REPORTING”?
Click to access UCM168505.pdf
That’s the version that Barbara Fisher cited in one of her articles.
It doesn’t cite Rosenthal nor make the statements (which have already been shown to not involve vaccines or VAERS) you quoted from Rosenthal. Rosenthal, however, is a separate citation used by Ms. Fisher. I thought you did your own research. It seems like you take that done by other people and, well, don’t report it accurately.
This is a link to the FDA site – why would Ms. Fisher have any bearing, whatsoever, on this publication?! My point was there are two sources for AE reporting, and both are relevant. I love your wild aspersions, but you are entirely off-base.
You presented the two papers as though one was a subset of the other.
“I do know, courtesy of the FDA, the 1% to 10% estimation is derived from the report on the Clinical Impact of Adverse Event Reporting…In particular, regarding VAERS, Rosenthal et al. found that, even for known disease symptoms, ”
Perhaps you were just not being precise in your presentation.
Matt, From a quick search of VAERS: “Found 674 events where Onset Interval is 0 days from vaccination and Patient Died.” And “Found 2107 events where Onset Interval is 0 days and Patient Disabled.” I do not need to fabricate anything; people get vaccinated, people become disabled or die on the same day; and many more over the next 14 days…The extrapolation, using both ends of the estimated scale are not wildly extrapolated, this is very simple math. With the disease-related reports for: Congenital Rubella Syndrome (3), Pertussis deaths (2), Tetanus deaths (1), and Poliomyelitis (2); I do not see how the disease symptoms could possibly skew this range…Please explain YOUR inflammatory statements.
before you searched VAERS you had to click on “I have read and understand the preceding statement”
You are right, I’ll bet is is VERY common for people who are on death’s door to seek vaccinations; that MUST be high on their list of priorities (and the doctors’ priorities, too). And dying (or becoming permanently disabled) that very day that they received the vaccines, entirely coincidence…
Goodness, with all your skill, you suddenly can’t find a simple research paper?!
Did you follow the link–it’s a criticism of a vaccine paper (often quoted by vaccine critics) by Rosenthal et al.
I figured I wouldn’t spend a lot of time figuring out which paper you were citing because in general, when in a discussion like this one, someone fails to actually cite their source it is for a good reason.
Pretty clearly that was the case here. When you cite under reporting for diseases, not for vaccine adverse events.
“osenthal et al. found that, even for known disease symptoms, reporting is far from 100%: 22% (Rubella syndrome), 33% (Pertussis deaths), 40% (Tetanus deaths), with a high of 72% (for Poliomyelitis).”
What does that have to do with your argument? The fact that congenital rubella syndrome (a cause of autism which is prevented by vaccines, by the way) is under reported has nothing to do with vaccine adverse events. As does pertussis deaths–deaths from the disease not the vaccine, deaths from tetanus (not the vaccine). The statistics you are quoting have nothing to do with VAERS.
If you are going to cut and paste out of a paper, pick a section that is relevant to your point.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1615747/?page=3
The paper you cite backs up what I said–the reporting rate is higher for more serious adverse events. Interestingly, you cite a paper from the very beginning years of VAERS.
So, something like seizures after MMR was reported at a rate between 1/3 and 1/2 the time, and you present that even worse adverse events are now (when VAERS is more well known) at 1-10%. Doesn’t sound like sound reasoning to me. It is scary for those who don’t check your math though, so I suspect on Facebook and yahoo groups it will work well to instill fear and doubt.
Good luck with that VAERS thing.
What inflammatory statements? You’ve been trying to provoke a reaction. That’s plain. I called you on it. Pointing out that you are trying be passive-aggressive isn’t inflammatory. It’s accurate. Over the years, I’ve seen much worse. I wouldn’t be at this if such things bothered me. But it is valuable to point out the methods you use.
Your calculation is just plain wrong. You made assumptions about under reporting that were exaggerated,
Matt, you are attempting to speak for me, now? I never said my child was” OK in the short term after vaccine administration.” She suffered virtually EVERY symptom on the VIS, starting with administration of the shot, and continuing over the next 72 hours, finally culminating in the need for the hospital; the PEDIATRICIAN’S office kept responding to my frantic calls by telling me the symptoms were not important, “just give her more Tylenol.”. Without a temporal link between the administration of her vaccines and onset of her symptoms, her case would have, long-since, been dismissed from “vaccine court.”
Speaking of the “vaccine court,” there are NO judges, only attorneys in the position of “Special Master,” do your research – I am intimately acquainted with this process; clearly, you are not. To enlighten you, since 1998, every special master in the NVICP has been an attorney, Congress originally felt that the no-fault vaccine compensation proceedings would raise fewer legal issues than issues of medicine; so the thought the Special Masters did not need to be trained lawyers. Congress did recommend the Special Masters be
“well-advised on matters of health, medicine and public health,” but the original Special Masters only attended two days of educational training; despite the need to become familiar with the myriad, complex medical questions presenting in these vaccine injury cases; further, the Special Masters who have come on-board since this time have not received any specialized training!
Also, while you make ridiculous assertions, like my representing NVICP petitioners as an Expert Witness, you seem to have no understanding of the role of the Expert Witness in “Vaccine Court.” Expert Witnesses, with impeccable credentials, from renowned institutions, with histories of long wait-lists (of cherry-picked referrals) – the kind of specialist you would pay out-of-network to see, because they know their subject and have proven this time and again by resolving seemingly impossible health situations for their patients – are harassed, threatened, and shouted-down in these proceedings, and worse, their fees are refused or reduced seemingly arbitrarily by the Special Masters. Under the Special Master’s purview, the DOJ attorneys attack with accusations of bias and ad hominem attacks (wow, where do I see that, all the time?), rather than challenging the medical testimony of these expert physicians. Because of these tactics, it is close to impossible to find an Expert Witness to testify on the Petitioner’s behalf. Who wants to testify, if their professional credibility visiously attacked, and their very livlihood threatened?! Without an Expert Witness and his/her report, the Petitioner is not even allowed into the “Vaccine Court” proceedings; so, the behavior of the Respondent (DOJ attornies, more or less representing the NVICP, has significantly limited Petitioners’ ability to even be heard in the NVICP.
Further, the Special Masters operate as if the vaccines, administered as recommended by the CDC Program, have been proven safe – despite the IOM’s admission that there are “many gaps and limitations in knowledge bearing directly and indirectly on the safety of vaccines,” including, “an inadequate understanding of the biological mechanisms underlying adverse events following natural infection or immunization.” Knowing there is medical uncertainty regarding the adverse eff ects resulting from the US vaccination schedule, the Petitioner’s Expert Witnesses should be given every opportunity to present sound medical testimony, without having to endure aspersions cast toward their professional credibility and threats toward their livlihood. Even wacky Geier comes from a a respected and innovative background; every idea in the world of medicine was seen as whack when it was first suggested, many of these ideas have become common practice decades later…
You are right, “take a look at the ‘experts’ used in the Omnibus Autism Proceeding. It’s sad. People deserve better.” Too bad their options have been eliminated by the behavior of the very organization that places this requirement upon them…Add to this the joy of taking on a case and not knowing how many years it will be until you are paid, or how much you will receive from the NVICP, and you can guess how many attorneys are even willing to consider a Petitioner’s case, let alone take it on…
Of course, the real problem is the idea that anyone can prove (or dis-prove) a vaccine injury when no proper research has been undertaken, the only data available is ignored, and Discovery (which might yield such critical information as dose, ingredients, size of lots, known risks, etc) is barred. The entire process is subjective (and worse, certain cases are foreclosed by a Special Master mis-applying research conclusions). And many, many petitioners are barred from even attempting to participate by short timeframes for filing a case and the need for documentation in the medical record; like our experience, with the pediatrician, where NOTHING was written into the record when I called with concerns (our trip to the hospital, and the hospital records helped us make it this far).
From the outside, the process looks simple and generous, but I can speak from experience and state, “This is not the case.” The ~9,000 uncompensated cases represent only a small percentage of the vaccine injured…
“Matt, you are attempting to speak for me, now? I never said my child was” OK in the short term after vaccine administration.””
No, you stated that your child was “fine at the visit”.
“Speaking of the “vaccine court,” there are NO judges, only attorneys in the position of “Special Master,” do your research”
I have. Quite a lot. Most judges are attorneys. You asserted that the DoJ attorneys were the special masters. That is incorrect.
” Expert Witnesses, with impeccable credentials, from renowned institutions, with histories of long wait-lists (of cherry-picked referrals) – the kind of specialist you would pay out-of-network to see, ”
Honestly, I would pay money to avoid them.
Mark Geier has been an expert since the beginning. Since the beginning his sloppiness and “intellectual dishonesty” has been called out by the special masters. Consider the famous case of Hannah Bruesewitz. In his “expert” report, Mark Geier discussed her death and autopsy. All well and good. Except that she was still alive.
That doesn’t even touch on his lack of ethics when it comes to treatment of patients, nor his nonsense theory about testosterone and the use of Lupron as a therapy.
“their fees are refused or reduced seemingly arbitrarily by the Special Masters”
I don’t see it as arbitrary that, for example, the special masters decided to not pay for the Geiers (both father and son) to travel to Europe. Twice. For conferences which had nothing to do with their “expert” testimony.
Nor the recent case where an expert asked for $500 per hour, when his website says he charges $350/hour as an expert witness. $350/hour is $700,000 per year. That’s a pretty good salary.
Impeccable credentials? Like the woman who claimed to be affiliated with UCSF. When questioned she admitted that she sometimes uses the library there and goes to parties. Or the man who had the “rock award” on his CV. An award for which there is no record.
“the Special Masters operate as if the vaccines, administered as recommended by the CDC Program, have been proven safe”
No, they don’t. I’ve read enough decisions to see that. Perhaps you could quote a decision where they assume vaccines are proven 100% safe. The fact that they award damages is pretty clear that they don’t make that assumption.
” you can guess how many attorneys are even willing to consider a Petitioner’s case, let alone take it o”
let’s see–a court where one gets paid no matter if their client wins?
“Of course, the real problem is the idea that anyone can prove (or dis-prove) a vaccine injury when no proper research has been undertaken, the only data available is ignored, and Discovery (which might yield such critical information as dose, ingredients, size of lots, known risks, etc) is barred”
One doesn’t have to prove vaccine injury. One has to demonstrate “more likely than not”. If one can present a
Known risks are barred from evidence? Really? Please give an example. How can one bar public knowledge? Size of lots is barred? Ingredients are barred? Dose is barred? One can’t say, “your honor, the child got one vaccine, 0.5ml”? I think not.
” The ~9,000 uncompensated cases represent only a small percentage of the vaccine injured…”
Anyone who files a case was a vaccine injury? Sounds like a clear bias on your part.
Good luck with your case. I hope you are not going pro se.
Here’s the link, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1615747/?page=3 The reports have EVERYTHING to do with it… As Rosenthal states, while reporting for these, particular, items is higher, the rest is “significantly lower.” This is why I clarified with the actual number of reports – they are EXTREMELY low in number, so they do not skew the rest…Sorry you could not find this paper, yourself.
“Sorry you could not find this paper, yourself”
Same link I gave above.
You cited under reporting of diseases as example of under reporting of vaccine adverse events. Clearly a mistake on your part.
No mistake, the paper reads, “Reporting sensitivities of the two systems for serious events are comparable to estimated reporting sensitivities of vaccine-preventable diseases in the United States…” And goes on to list the percentages as I did…
You listed the percentages as though they were related to vaccine adverse event under reporting. Clearly a mistake. Move on.
Matt, Yes, I brought a healthy, alert, strong 3.5 month old infant to the visit – until the administration of the vaccines, she was fine. After the vaccines, she began to scream, screamed for hours, lost tone, and fell apart, never to have strength and vitality, again.
You state, “Most judges are attorneys. You asserted that the DoJ attorneys were the special masters. That is incorrect”
Actually most are attorneys, pulled from DOJ:
Mr. Hastings was appointed Special Master in March 1989. Mr. Hastings served as Assistant Chief, Claims Court Section, Tax Division, U.S. Department of Justice 1985-1989.
Miss Millman was appointed Special Master on April 25, 1991. Miss Millman formerly served as a Trial Attorney under the Attorney General’s Honors Program in the United States Department of Justice, Civil Division, from 1976 to 1978 in New York, and in the Torts Branch from 1978 to 1988 in Washington, DC.
Mr. Moran was appointed as Special Master on December 8, 2005. He entered duty on January 17, 2006. Before his appointment, Mr. Moran worked for five years as a Trial Attorney in the Department of Justice, Civil Division, Commercial Litigation Branch.
Ms. Daria J. Zane was appointed as Special Master in February 2011 … Prior to the U.S. Attorney’s Office, Ms. Zane was a trial attorney for the United States Department of Justice, Environment and Natural Resources Division.
Denise Vowell IS an attorney and judge…
Ms. Campbell-Smith was appointed as Special Master on December 8, 2005. She entered duty on December 19, 2005. On April 7, 2011, she was appointed as Chief Special Master.
Ms. Campbell-Smith practiced law, for about 6 years, with the law firm of Liskow & Lewis in New Orleans, Louisiana. She was also a clerk for Judge Emily C. Hewitt of the United States Court of Federal Claims.
Lisa Hamilton-Fieldman was, recently, appointed Special Master of the United States Court of Federal Claims. She served as a Hearing Officer for the United States Department of Energy, Rocky Flats Facility; not DOJ, but still in defense of the Government.
Nora Beth Dorsey is also newly appointed this year. She was the Director of the civil litigation defense team of Hancock Daniel Johnson & Nagel, P.C. in Fairfax, Virginia; this practice is primarily directed to the representation of health care providers in the defense of professional liability litigation.
Congress intended that the Vaccine Program provide individuals a swift, flexible, and less adversarial alternative to the often costly and lengthy civil arena of traditional tort litigation; but the have loaded the field of adjudicators with individuals known to viciously defend the Government and Big Business…
Yes, “Expert Witnesses, with impeccable credentials, from renowned institutions, with histories of long wait-lists (of cherry-picked referrals) – the kind of specialist you would pay out-of-network to see, ” I do not pretend to know the particulars of the individual witnesses selected by a few cases, but what I do know is what is vilified one day in medicine is vindicated and often vaunted a number of years later; case in point, Dr. Bernard Fisher, who had the audacity to declare it was better to take only a small part of the breast in breast cancer and radiate, rather than the entire breast – common practice, now. Or how about Dr. Ignaz Philipp Semmelweis who dared to suggest doctors should wash their hands before assisting in Labor and Delivery; one generation later, this was common practice? Or Dr. James Lind, a British naval surgeon, who proposed fresh fruit would prevent sailors from dying of scurvy; 48 years later it is practiced, and sailors stopped dying needlessly. Or Dr. Carlos Findlay, a Cuban physician, who found mosquitos were the cause of yellow fever; 30 years later, this idea was finally embraced. Clearly, there is a long and torturous history in Medicine of attempting to maintain the “status quo” at all expense. One would expect a new idea to be investigated, with an open mind; but instead, this field (and most “scientific” communities) chooses to stigmatize those who dare to present their “heretical” ideas…In particular, I cannot endorse (and in the past have not) the use of Lupron on children – because I had a horrific, on-label experience personally, I still do not profess to know the biochemical implications of the drug, nor understand the scientific rationale or outcome from its use in the manner the Geiers applied it. However, I would, with an open mind take time for a very thorough review of the data and research construct to understand the application before I jumped on any bandwagon. “Science” is not a stagnant field, it should (and does) change daily; what we know today is not all there is to know, and shooting the messenger simply delays learning what they may already of discovered. While the Geiers do not fit my needs as “Expert Witnesses,” they have many years of valuable, valid, and applicable experience and training. Many, many experts across many fields of study have flaws, as do you and I; we are all human.
Throwing the baby out with the bathwater is a rookie mistake. Another excellent example is cherry-picking which statements from an expert are valid; when Zimmerman was defending HHS, everything he said was Godspell. However, same witness, on the side of the Petitioner, presents evidence contrary to the previous evidence; Petitioner.wins the case, but the “Expert” opinion is immediately discarded, and the “court” returns to the previous statements in follow-on cases…You can’t have it both ways, either the witness recognized valid new data, incorporated it in his expert report, and the “court” found it valid – or they didn’t.
And, I’ll bet you WOULD pay money to see Dr. Zimmerman (HHS must have though highly of him, to select him as one of their “Experts.”
Regarding the fees, you cherry-pick cases where reduction would be expected. “their fees are refused or reduced seemingly arbitrarily by the Special Masters;” my point is it is a pig in a poke – who knows what I will have to pay out-of-pocket, to retain my “Expert,” because the balance will fall on my shoulders – win or lose…Also, because every hour in a work-week is not bill-able, because of travel, uneven case-loads, and other lost time, most experts do not make $700K annually; most are practicing MDs, and the time away from their daily practice of medicine and the economic hardship this imposes should be compensated..
Maybe I should have stated, for off-Table claims (the majority of claims submitted, that face adversarial tactics), “the Special Masters operate as if the vaccines, administered as recommended by the CDC Program, have been proven safe.”
You say, “let’s see a court where one gets paid no matter if their client wins?” Sure they get paid SOMEtime – would you work for twelve years, unpaid, for a capped payment, sometime in the unspecified future?
You say, “One doesn’t have to prove vaccine injury. One has to demonstrate ‘more likely than not’. If one can present a .” I can only imagine you were going to finish this thought with, “if the injury appears on the Vaccine Table and occurred within the prescribed time-frame.” Because, otherwise, “if an injury or condition is not on the Table or if it did not occur within the time period on the Table, the petitioner must prove that the vaccine caused the injury or condition. Such proof must be based on medical records or opinion, which may include expert witness testimony.” (CDC)
Yes, discovery is barred by the Special Masters, using the Court of Federal Claims rules pursuant to section 2071 of title 28…(E) provide for limitations on discovery and allow the special masters to replace the usual rules of discovery in civil actions
in the United States Court of Federal Claims. I am not referring to the general, publicly available information – this is not a subject of discovery, as most laypeople would realize.
And, yes, the vast majority of cases that are filed in the NVICP, are filed by families who believe they have suffered an AE from vaccination, and attorneys who have received enough information to believe the cases will be accepted and heard by NVICP; meaning they were filed within 3 years of the vaccine injury.
Sadly, pro se is the only way some families are even able to attempt recompense (assuming they can find an “Expert Witness” willing to work with them); and families are not likely to be reimbursed for the hours they invest in preparing and presenting their case…
A long response when “I made a small error” would have sufficed.
You previously stated: ” and the DOJ attorney (Special Master) gets to decide ”
The DoJ attorney is not the Special Master and does not get to decide. Why you dig your heels in rather than just admitting and moving on is beyond me.
Good luck with your case.
Matt – I just demonstrated the “Special Masters,” in fact, came from positions, as attorneys for the DOJ – how did I make a mistake? Both the attorneys and the Special Masters (up until recently, apparently) come from the DOJ…Basically, this program is built to play hardball, defense, defense, defense…
@Liz – except that the burden for proving a case is much lower than in standard Civil Court & there are whole tables of “adverse reactions” that are automatically compensated…..if the Court was so “biased” then why would they have even ruled for anyone, at any time?
And you are moving the goalposts – first you said that the rulings were made by DOJ Attorney & that the Special Masters were “DOJ Attorneys” – and none of those individuals were “active” DOJ attorneys at the same time they were also Special Masters…
In fact, it is extremely common for Attorneys in general to have experience working for the government & private practice, working to gain experience on both sides of various casework (prosecution, defense, civil, etc).
You claim bias, but you offer no proof – perhaps you are enamored with Jake Crosby’s 666 degrees of separation, where anyone can be linked to anyone else, regardless of how many links in the chain you have to follow or the timeframe (like not being a DOJ attorney for years before getting appointed).
@Lawrence, With the opportunity for Discovery in Civil Court, I would have a slam-dunk case. So, let’s eliminate this PhRMA protection, and let them take the same risk I am more than willing to take…It will never happen, their products are known to cause harm and they fail to assure fully informed consent.Those “whole tables” are useless – tell me, how do you identify if a newborn has Guillian Barre? How about encephalopathy? What are the symptoms of a Partial Complex Seizure in an infant? How about we take a look at that table: http://www.hrsa.gov/vaccinecompensation/vaccinetable.html
Notice the timeframes? How about you go and get 4 – 9 shots on one day and let me know how you are feeling at 72 hours? Than at 2 weeks. If you write-off your symptoms as “normal” for three days, then end up so sick you seek hospital care at 10 days, you are excluded from the Table…Even better, there are 8 vaccines you can get with NO adverse events even listed on theTable – perfectly safe/ I think not. An attempt to assure people are unlikely to receive compensation? Undoubtedly.
And it does not matter if they are “active” DOJ, or former, they have the mindset that the Petitioner is not entitled to recover…I see bias in how Petitioners are treated, inconsistency in how evidence is considered, and serious discrepancies in which cases are compensated and which are not. Fact is, reliance on medical records (or lack thereof) is, in and of itself discriminatory – one cannot control what the doctor chooses to put into the record or leave out from the record…Further, since it takes so long to be heard off-table, certain records are not even available any longer…
Frankly, Lawrence, I think you protest too much. If the vaccines are so safe, then there should be no need for Vaccine Court. Since there is the need for Vaccine Court, it seems reasonable to compensate those who are permanently disabled, for the loss of their potential, freedom, and capability. This process should not require the Petitioner to prove how the injury was caused, but allow no access to the information which would prove the harm. This is like imprisoning somebody for shoplifting, even though the store has video footage showing the person stole nothing.
“With the opportunity for Discovery in Civil Court, I would have a slam-dunk case.”
By definition, you can’t say this. Discovery means finding things which are not yet known to you. You are welcome to your beliefs, but your arguments fall
short.
” they fail to assure fully informed consent.”
One can sue vaccine manufacturers for failure to inform. You are invited to open a civil case.
” How about you go and get 4 – 9 shots on one day and let me know how you are feeling at 72 hours? ‘
Mild fever. Resolved by 72 hours.
“And it does not matter if they are “active” DOJ, or former,”
As far as demonstrating that you appeared to not understand how the system works, it does matter. As far as demonstrating that you refuse to admit a clear mistake, it does matter.
“Frankly, Lawrence, I think you protest too much”
“. If the vaccines are so safe, then there should be no need for Vaccine Court. ‘
No. If vaccines were 100% free from any adverse events, there would be no need for vaccine court. Very safe and 100% free from adverse events are different things.
I, for one, have a sense of irony at this statement.
“This process should not require the Petitioner to prove how the injury was caused,”
The process does not require the petitioner to prove how an injury was caused. Again, perhaps you might want to do some research on the vaccine program. The petitioner need only present a plausible explanation. It is then on the government to prove that the argument presented is not correct.
“This is like imprisoning somebody for shoplifting, even though the store has video footage showing the person stole nothing.”
Since this follows from your incorrect statement about proving causation, it is nothing like this at all. Again, you are invited to educate yourself on the vaccine program before making incorrect statements.
“you are excluded from the Table”
So? Then you argue an off-table injury. The fact that any event within the specifications of the table are compensated speaks to the low bar of the program, not the high bar you are attempting to portray.
Matt,You state, ” I reject the attitudes where people diminish the challenges of others in our community. Statements such as “struggle a little socially”
That is all well and good, but your rejection means nothing in the grand scheme of the world – people, across all races, religions, creeds, genders, and colors each have struggles and crosses to bear – what makes those of an individual who processes her environment differently, or struggles to be pleasant in the face of ritual small talk or the need to control any outward sign of raging OCD, as examples, any more important or special than the struggles faced by someone on chemotherapy for years and still having to work each day, or someone who is parapalegic and wheelchair bound, or someone who has psoriasis, or someone who is hearing impaired? Yes, there are challenges facing those with Aspergers that are personally painful – it is very hard not to “fit in” and to be constantly criticized for being and thinking differently; but these challenges only control one’s life to the extent an individual allows them to control one’s life. A good example of this is, when a store is overwhelming, and you can make the choice and take the action to leave, this is the freedom to choose your relationship with the world.
What if you could not even communicate with anyone that the store is overwhelming, and you are strapped into a wheelchair-sized stroller? You are thrashing, humming, and banging your head on the frame of the stroller, trying to communicate you are feeling sick from the close aisles, but your “assistant” is busy shopping; and that behavior is “just Autism,” anyway…Your relationship with the world around you is one of pain and inability to communicate, as opposed to one you control – do you see the difference?
You say, “I also reject the notion that an individual with autism and ID can not “form a meaningful relationship with the world-at-large”. I reject this notion from direct experience.” First of all, I do not discriminate between Autism and Autism with ID – I feel this is inappropriate, as many diagnosed with ID simply were lacking an effective method of engaging and communicating at the time of receiving the ID label. I did not mean that people with moderate to severe Autism have no relationship with the world, only that they are not free to choose the overall terms of that relationship; this needs to change – they need to have the opportunity to be heard and the ability to communicate their wishes or needs with the world-at-large…
I understand that you see Autism as a personality trait that makes people with Autism who they are; I feel that people have Autism, and that, like having lower body paralysis, it is a challenge, but you can work with, and around it, in order to still be yourself, but also be able to drive a car, get a college education, have a career, have friendships, travel, or anything else you can conceive. Even in moderate to severe Autism (with or without your ID label), with the right opportunities, many of Autism’s perceived hurdles can be cleared and that individual might find greater individual freedom. This is happening, slowly, for my daughter; if things continue, odds are good she will obtain a college degree and go on to choose her own future, and meet it with the skills she needs to live whatever type of life she chooses. She will always have Autism, but it (nor the ID label) will not dictate her future.
As much as you reject my views and consider them divisive – I reject your desire to label people “ID.” I reject your belief that HFA/Aspergers is in any way comparable to being unable to speak, control your bodily functions, digest your food, meet your own personal care needs, stay safely out of traffic and waterways, and more. I, too, have experienced both ends of the Spectrum, and can say with authority, the challenges of HFA/Aspergers offer a welcome respite to those who are clawing their way past the manifestations of their own moderate to severe Autism. From my perspective, every person, infant, child, teen, or adult, should be given the opportunity to develop the skills needed to be heard and understood and the choice of how to live their life; if you see that as divisive, so be it.
Go ahead and reject the term ID (Intellectual Disability). It’s the common term and less
“I reject your belief that HFA/Aspergers is in any way comparable to being unable to speak, control your bodily functions, digest your food, meet your own personal care needs, ”
Odd, since I never stated these beliefs. Once again, perhaps you could work from facts rather than from predjudice.
“I understand that you see Autism as a personality trait that makes people with Autism who they are”
Again, you “understand” things which are not accurate. I have over 1200 articles written. If you can’t be bothered to read what I say, don’t build straw men around me.”
” First of all, I do not discriminate between Autism and Autism with ID
Odd statement from one who creates divisions between autism with ID and HFA/Aspergers (as noted above)
“What if you could not even communicate with anyone that the store is overwhelming, and you are strapped into a wheelchair-sized stroller? You are thrashing, humming, and banging your head on the frame of the stroller, trying to communicate you are feeling sick from the close aisles, ”
Those behaviors *are* communication. What you are describing is “what if you are communicating but the people around you are not receiving it?”
” I did not mean that people with moderate to severe Autism have no relationship with the world, only that they are not free to choose the overall terms of that relationship; this needs to change ‘
The closest you’ve come to admitting a mistake in this whole discussion. Sad that you can’t manage that.
Good luck with your case. Don’t show your contempt for the officers of the court. And if you think you are good at hiding your feelings, you may want to reconsider.