PACE study confirms autism prevalence

11 May

The legal study published by anti-vaxxers and law students yesterday claims that 80 cases show definite autism. If we accept that as true (which I don’t, but there we go) this is an autism prevalence amongst the population of claimants of just over 3%. As we all know, a recent study puts the Korean prevalence as just under 3%. Close enough on behalf of the legal claims, when we allow for their dodgy definitions to be a match.

Or maybe we can be a little more exact. As Kim Wombles noted yesterday, 39 cases confirmed beyond parental anecdote equals a prevalence of 1.5%. Half a percentage over the UK official prevalence.

So what does this mean? It basically means that all things being equal, whichever prevalence figures you like to use (Korean or UK), this law study shows that amongst the population of claimants, there are no more autistic people than one would expect.

But surely, what we should be looking at is if vaccines caused autism in these cases?

OK, lets do that (thanks to Sullivan for spotting these):

From the paper:

[R]espondent’s report. . .suggests vaguely. . .that Kenny’s problems ‘can be attributed in part to other causes such as a family history of epilepsy, autism and tonsillar hypotrophy. . .Dr. Spiro did not even purport to know what did cause Kenny’s seizure disorder;? his basic point was that in his view the DTP did not cause it.”

From the case notes:

In this regard, respondent’s report (filed September 7, 1990) suggests vaguely (p. 5) that Kenny’s problems “can be attributed in part to other causes such as a family history [*18] of epilepsy, autism and tonsillar hypotrophy.” But in the attached expert report, upon which respondent based that assertion, Dr. Spiro candidly admitted (p. 2) that he can only “speculate” as to such possibilities. And certainly at the hearing, Dr. Spiro did not even purport to know what did cause Kenny’s seizure disorder; his basic point was that in his view the DTP did not cause it.

While Dr. Kaufhold notes Dr. Schmidt’s initial impression of infantile autism, she does not list autism among her impressions, but rather says Travis is significantly developmentally delayed to a degree not yet ascertained. Other medical personnel appear to use the term “autism” or “autistic” synonymously with “aphasia” or the absence of the ability
to speak. See, e.g., Pet. Ex. 7 at 148; Pet. Ex. 7 at 208; Pet. Ex. 7 at 393.

Here is an interesting statement:

While Dr. Schultz believes that Travis suffers from some autistic-like features, he does not now nor has he ever believed that Travis suffers from true autism.

In this case, Dr. Schultz is the doctor of the petitioner: Travis Underwood. Travis is child 7 in the PACE table. Here is how Holland et al. quoted that decision:

“In addition, respondent noted that Travis’ medical records indicate that he suffered from mental retardation and autism. These conditions, according to respondent, are not related to the residual seizure disorder.”

Dr. Schultz also said:

Moreover, Dr. Schultz testified that Travis is distinguishable from children with true autism because he (1) seeks affection; (2) makes eye contact; (3) doesn’t require sameness in routine as usually found with autistic children; and (4) doesn’t engage in twirling, flinging and other self-stimulatory behaviors to the same degree as autistic children.

So, next time someone tells you ‘autistic-like’ features or ‘features of autism’ are the same things as autism, tell them to look at the cases in question.

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31 Responses to “PACE study confirms autism prevalence”

  1. Navi May 11, 2011 at 13:09 #

    Ooooh. I’m sorry, but I have to take issue with the last excerpt. My son’s pediatrition used the same reasons to. Suggest the school system incorrectly diagnosed him. None of those are part of diagnostic criteria. Not to say this child does have it, just to say that’s a poor explanation as to why he does not have it, and it perpetuates stereotypes.

  2. Stuart Duncan May 11, 2011 at 14:15 #

    Yup, that’s pretty much the conclusion that I had drawn as well… if they find that 1 to 3 % of the vaccine injury cases include autism, does that prove that the vaccines caused the autism or does it prove that 1 to 3 % of children have autism?

    To use Seth Mnookin’s point, if it turned out that 1 to 3 % of them were left handed, does it prove that the vaccines caused them to be left handed or that 1 to 3 % of them are left handed?

  3. _Arthur May 11, 2011 at 14:18 #

    Of course the VICP claimants (or in this case, the VICP-compensated claimants) are far, far, far from a random sample of the general population. So it is impossible to assert that any statistic coming from this sample is meaningful respective to the general population.

    Furthermore we know that there’s a 5000-odd group of claimants that are generally in the VICP program _because_ they are autistic, and they blame vaccines due to the loose temporal association between the first autism symptoms, and vaccination.
    Because that group was purportedly and actively recruited into the program, their presence would be sufficient to preclude any statistical significance.

    That being said, at a first degree, the result of the “study” supports the idea that autistic children suffer from adverse effects from vaccines at the same rate than the general population, and that the VICP program works, those kids are getting compensated for the “table injuries”, the *known* occasional adverse effects from vaccines. Oh, and these proceedings are free, the lawyers for the parents are being paid by the “Court”, no matter if they win or lose the case.

    In the Autism Omnibus, the group of 5000 claimants attempted to present scientific (!) evidence that the autism of these kids was _caused_ by certain vaccines. We all know that they failed miserably to present valid or even plausible theories for that.

  4. passionlessDrone May 11, 2011 at 16:59 #

    Hello friends –

    I am saddened. There looks to be a lot of expediency to a desired conclusion, logic be damned, going on around here lately, and in this post in particular. To be sure, lots of other places have the same thing in the other direction, but that’s no reason to throw level headed analysis to the wind.

    The expert in question uses some awful measurements to give his version of ‘true autism’, including, the degree to which a child seeks affection. You heard it on LBRB first, kids that seek affection aren’t truly autistic! Also, children that seek eye contact, and don’t engage in ‘enough’ self stimulatory behaviors do not have ‘true autism’. Good to know. These are the types of myths that usually get debunked on this site.

    In most cases, ‘true autism’ is something that gets you beat up around here; i.e., ‘stop talking about the entire spectrum’. And if someone were to actually say, ‘my child with autism doesn’t seek affection’, they are immediately jumped on for ‘dehumanizing’ their child (and thus, everyone with autism); why is the fact that a child has received a vaccination award make this acceptable? Why?

    Even more alarming, however, is that no one seems bothered by the fact that in the Korea study posted a few days ago, the overwhelming majority of the ‘cases’ of ASD were in regular classrooms, without aides. I wonder, what has happened in a timeframe of a few days such that these children represent ‘true autism’, while a child awarded a vaccine compensation that displays autistic behaviors, do not. Does anyone, anyone really think that the mass of previously undiagnosed Korean children, unaided in mainstream classrooms, have less eye contact, seek affection less, or engage in more self-stimulatory behaviors than the child referenced here? If you don’t think that, if in fact, you think that is a bad, bad joke, and you come here for actual discussions about autism with a semblance of intellectual honesty, this attitude should have you apopleptic.

    We are witnessing the transformation of the spectrum into an accordion to be played as advantageous, expandable enough to easily accept a tripling of autism if you are a self sufficient Korean student, and compressible enough to eject a child who just happened to have a vaccine award, but because they seek affection, must not, therefore, be on the spectrum.

    Even worse, how have we come to a place where a fifty percent increase, must less a three hundred percent increase, is something to be sneezed at? The absolute value from 1 to 1.5, or 1 to 3 is small, but in terms of relative change, these are explosive changes! Imagine if interest rates ‘just’ went up half a percent, or two full percent in a week? It isn’t about raw change, it is about the degree of change from where we were.

    If the Korean studies are accurate representations of incidence, doesn’t this mean that there has been an epidemic, if, as was just posted here a week ago, the NHS study in England found rates at 1% in the adult population? I certainly didn’t see any skepticism towards this study when it was posted here.

    If we had so much confidence in the NHS findings in the adult population a week ago that it allowed us to dissavow the epidemic, and we also have confidence in the Korean study, then we have no choice but to assume that autism rates are three times higher in children than adults! Do we have confidence in the Korea children study and the England adult study?

    If we do, we must admit that there is a big difference in adults and children. Alternatively, if we don’t have confidence in either, thats OK, but we should tread very carefully in trying to draw anything but the most tenuous conclusions from these studies.

    Selective skepticism is just like not being a skeptic at all.

    – pD

    @Repost [had saved in text editor / have learned my lesson about composing long entries in a browser, finally.]

    • Kev May 11, 2011 at 18:21 #

      Very good points pD. I need to absorb some of them.

  5. RAJ May 11, 2011 at 17:18 #

    Another study pubished over at the Simons Foundation has reported that 30% of the entire general population has at least one ‘autistic’ trait condition and added to the recent Korean study that 1 in 38 children have ‘diagnosed’ autism’ confirms what Kanner predictively said in the 1960’s. The diagnosis of ‘autism’ had become an abuse that ‘threatens to become a fashion’.

    ‘Autism’ has now officially become a diagnostic abuse. It has become so meaningless that none of the research can possibly amount to anything but pop psychology fluffery encompassing any theory from vaccines cause autism to genes cause autism.

    The psychologists and psychiatrists need to produce a meaningful, distinct diagnostic scheme that seperates ‘true’ autism from the broad spectrum of neurodevelopmental and neuropsychiatric problems that all share weakly defined ‘social-cognitive’ impairments. Even Alzheimers, Parkinsons, and adult stoke patients can and often do demonstrate theory of mind and ‘social-cognition’ difficulties.

    It is questionable whethre DSM-V will add even further to the dilution of exactl what autism is and is not.

  6. Ken May 11, 2011 at 18:47 #

    Why is everyone focused on the percentage of autistic cases instead of the true point, that the government paid these families for ‘brain damage’ with ‘autistic type symptoms’caused by vaccination?

    That is the true point, not the prevelance of how often it occured.

  7. Kev May 11, 2011 at 19:22 #

    Which is not the same as saying, vaccines caused autism, Ken.

  8. Ken May 11, 2011 at 19:46 #

    Semantics Kev…

    • Kev May 11, 2011 at 20:01 #

      Nooo, not semantics Ken. Actually a very important distinction. Read the quote that Holland et al ‘forgot’ to include:

      While Dr. Schultz believes that Travis suffers from some autistic-like features, he does not now nor has he ever believed that Travis suffers from true autism.

      Do you see the difference?

  9. Ken May 11, 2011 at 20:20 #

    @ Kev
    well, you found one of the one’s in the report that were only brain damaged…yay. What a reason to celebrate huh? Such a difference…

    Anyway, here is the breakdown from the report:

    “Of these eighty-­three compensated cases including autism, seventeen note an autistic disorder in a published decision of the Court of Federal Claims and twenty-­two have SCQ questionnaires confirming caregiver reports of autism. In other words, thirty-­nine of the eighty-­three cases, or 47% of this sample, have confirmation of autism beyond parental report alone.”

    • Kev May 11, 2011 at 21:05 #

      I thought you weren’t concerned about the prevalence in the report Ken?

  10. Joseph May 11, 2011 at 22:00 #

    I would question the assumption that the prevalence of autism among vaccine claimants should be the same as in the general population, if autism and vaccine injury are unrelated.

    Given that epilepsy (and I’m guessing brain damage) are part of some table injuries, and given that autism is no doubt over-represented among those with epilepsy and brain damage, it follows that autism must be over-represented among vaccine claimants, even if there’s no relation.

  11. _Arthur May 11, 2011 at 22:09 #

    Yes, Joseph, the sample is hopelessly skewed. The only conclusion that can be obtained from the sample, is that some autistic children suffer from adverse reactions to vaccines (as anyone else), and also that some adverse reactions to vaccines have symptoms in common with autism.

    All that was already known. This study sheds no light on anything.

  12. McD May 12, 2011 at 01:14 #

    I think the point was this: “Other medical personnel appear to use the term “autism” or “autistic” synonymously with “aphasia” or the absence of the ability to speak.”

    That merely not speaking does not place a kid on the spectrum, not that this is a case where someone is claiming a kid with PDD-NOS doesn’t have ‘true’ autism.

  13. Prometheus May 12, 2011 at 17:19 #

    The point in debating how the 83 cases outlined in the PACE “study” were determined to be “autistic” is to allow us to compare the prevalence in the PACE “study” to that found in the general population.

    After all, what the authors are claiming (or “questioning”) is that there are more cases of autism among the children receiving compensation from VICP than in the general population. If the prevalance is higher among people compensated by the VICP, there is a basis for further investigation. It still wouldn’t “prove” that vaccines cause autism – it would simply be an indication for further study.

    If, on the other hand, the prevalence of autism among people compensated by the VICP is the same as the general population (or less – see below), the argument that “vaccines cause autism” receives yet another (totally redundant) nail in its coffin.

    The problem is that the autism prevalence numbers for the general population – even the educational numbers – use much tighter criteria than used by the authors of this study.

    The closest thing we have to an autism prevalence number based on criteria used in this “study” is the abyssmal GR telephone survey, which simply asked parents if their child was autistic. This survey found an overall autism prevalence of 4.7%, more than a bit higher than the PACE “study”.

    So, I think it is completely appropriate to ask what criteria were used to categorise a child as “autistic”, since that information is critical to making informed, rational comparisons.

    Of course, I suspect that the authors of this “study” weren’t the slightest bit concerned about generating useable data; they just want to generate useable controversy.

    However, if you compare the PACE “study” to comparable “data” from the general population (i.e. the GR telephone survey of 2007), it would appear that the autism prevalence among people receiving VICP compensation is lower than that in the general population.

    Prometheus

  14. _Arthur May 12, 2011 at 18:25 #

    “If, on the other hand, the prevalence of autism among people compensated by the VICP is the same as the general population…”

    You cannot conclude even that. The sample is too skewed.

    Autistic cases are *known* to have been actively enrolled in the VICP by speciality personal injury lawyers. About 5000 of those cases were disallowed en masse after losing the Autism Omnibus proceeding. But arguably, an unknown number of those may have opted to claim a “table injury”, presented a plausible case (high fever 5 days after vaccination, allergic reaction, etc…), and won. This is arguably sufficient to make the results autistic-heavy.

    But, in this study, the authors were unsatisfied by the number of genuine autistisc they could tally, so they had to pad their count with anyone whose case mentions _any_ symptom of autism.

    From that angle, the results are even more unimpressive.

  15. Prometheus May 12, 2011 at 18:59 #

    Arthur,

    I am aware that the VICP was “stuffed” with autism compensation claims (it shows very clearly on the VAERS database) by tort lawyers. This would be expected to skew the prevalence of autism among people receiving VICP compensation upwards, so if the autism prevalence is even within a factor of two or three of (let along equal to or less than) the prevalence in the general population, the “vaccines-cause-autism” hypothesis is not supported (a nice, “sciencey” way of saying “another nail in a nail-studded coffin”).

    The fact that they didn’t get a clear excess of autism even with the way they broadened the “diagnostic criteria” speaks volumes to their desperation. In reality, they only had seven (7) cases of documented (medical, educational or court records) autism, so the prevalence (comparable to reported prevalences in the general population) they found was actually only 0.3%.

    I’d say that they failed to make their point.

    Prometheus

  16. _Arthur May 12, 2011 at 19:27 #

    Fail they do.

  17. _Arthur May 12, 2011 at 19:34 #

    As I mentionned elsewhere, the Hannah P case is certainly one of their 83 “maybe autistic” compensated cases.

  18. Stuart Duncan May 12, 2011 at 21:22 #

    Yes Prometheus, I’m inclined to agree. They went looking for autism in vaccine injury cases, specifically those that resembled autism and yet they only found 83?
    If their case is as strong as they say it is, they should have found 2500 cases, not 83.

  19. _Arthur May 12, 2011 at 21:28 #

    Actually, they had 5000 cases, but they failed to establish causality for all those.

  20. Sniffer May 12, 2011 at 22:33 #

    Dear All

    You should listen to the video again 83 “is only the tip of the iceberg”

    For example from over 4000 MMR vaccine damage claimants’ in the UK only 10 were willing to continue without legal aid certificate protection, when the legal aid was withdrawn by non executive director Sir Crispin Davis head of the LSC at that time(the directorship came after).

    From the 4000 claimants’ only 1 was ever awarded damage payment .

    What would that make your clever dick, figures and percentages work out at in comparison?

    The 83 are very brave people .Coping with autism takes a special person .To come forward in public and to be microscopically scrutinised by whoever takes balls.

    Respect

    Sincerely

    Sniffer

  21. sharon May 13, 2011 at 05:57 #

    Sniffer says, “Coping with autism takes a special person.” What is your connection to Autism if you don’t mind me asking? The reason I inquire is you sound a lot like a previous commenter here who wanted to argue about vaccinations but had no genuine concern or connection to anyone with Autism. Unlike most of us who comment here.

  22. Sniffer May 13, 2011 at 07:14 #

    Dear Sharon

    What is your agenda in finding out,who and what connection one has to the subject matter?

    Sincerely

    Sniffer

  23. sharon May 13, 2011 at 09:07 #

    @Sniffer I wonder why you use the term agenda? You seem to assume I am asking a leading question. I am not. I am genuinely interested.

  24. Darold Treffert May 21, 2011 at 02:32 #

    There are many shortcomings in the PACE study, the most critical of which is the failure to distinguish “autistic like” from “Autism” narrowly, and appropriately, defined. The study “includes autism when perhaps not using that term specifically”. A large number have ‘autistic features’ (the term appropriately used in the Poling case).

    “Autistic-like” and “autism” are not the same causally,
    treatment wise or outcome wise. Patients can have “Parkinson-like symptoms” from a variety of causes but not have Parkinson’s disease.
    Patients can have Alzheimer’s like symptoms in a variety of dementia disorders that is not Alzheimer’s Disorder. I refer you to my posting on http://www.savantsyndrome.com regarding children who read early (hyperlexia III) or who speak late (Einstein syndrome).
    I have a sizeable number of cases where a diagnosis of “Autism” PDD/NOS or Asperger’s was prematurely and inappropriately applied based on later outcome where the ‘autistic-like” symptoms fully disappeared (because it was not “autism”. A number of my savant syndrome patients have autistic features (echolalia, hand flapping, OCD, for example” but their underlying disability is organic brain disorder from a variety of causes or some other developmental disability. They are not “autistic” although many accounts refer to them as ‘autistic savants’. Only 50% of savants are autistic; the remainder have other underlying disabilities.

    I met my first autistic person over 50 years ago when I started a childrens unit for autistic (and autistic like) children here in Wisconsin. I also, because of my long career, had a chance to study under Dr. Kanner when he was a visiting professor in Wisconsin. A posting above refers to Kanner’s concern that the diagnosis would become one of fashion. We continue to dilute “autism” to where the diagnosis has lost its required diagnostic specificity if we are ever to break it down into its component parts with respect to cause, treatment and prognosis.

    The beginning of wisdom is to call things by their right name.
    Autism has fallen to the same disease de jour as ADHD and bipolar disorder, both of which are at the same ‘epidemic’ levels as Autism. The NYT reported this week that 5% of US adults have a ADHD diagnosis BUT that represents only 10% of those with ADHD.
    We are approaching that kind of arithmetic, in my opinion, by failing to call things by their right name in Autism.

    I think we can do better in fairness to our patients, and their families.

  25. PeripheralPerspective May 23, 2011 at 16:52 #

    So what I’m understanding from Dr. Treffert is that there are different underlying causes and treatments in those with “autism-like” and true autism, i would see that as true. The thing is, the way I understand autism is that it is an umbrella ranging from those symptoms that are purely genetic and those that are purely environmental, those outskirts would then be “Autism-like” yes? How I understand Autism is that something has pushed that balance of information processing asunder. And the symptoms generally come from just that… too much information. And many things, or combination of things can create that situation (too much going in too little getting through— systems thinking). MOST of the times we see a combination of genetic plus environment, hence most have a very strong underlying inheritable component. And many times, as we would expect, that component is stable across a lifetime. And if and because there are environmental components we see some “recover” certain aspects of dysfunctional aspects and make great improvements (allostatic loads and stress balancing glial/cytokine/inflammation etc). And some, espeically prenatally impacted (most likely stress or hormonal aspects impacting the very basic brain development and interactive stress dynamics from estrogen/dopamine/sert/HPA), can and will be a lifetime of constant dysfunction/function or constant management. I agree to see the distinction Treffert makes when he knows very clearly other underlying disorders creating “gain-of-function” attributes (savantism)… any stress to any system can create this (brain damage other genetic damaging disorders)… even without genetic inherintence and the same with vaccines creating “autistic-like” a purely environmental impact (brain damage) can also create gain or loss of functioning and development (the brain damage creates adaptation process and compensation patterns, so not the damage that is “autistic-like” but the compensation to damage that creates the “info-overload” features of autism)… so true Autism would be anyone in between then? That still leads to quite a few and would then lead to the study by Simons stating that up to 30% show autistic traits… these would be true autisms then, because it is the inherited plus environment combination here that is possibly setting them up for the comorbid disorders of our attempts to regulate and adapt to a less than hospitable environment and our continued dysfunctional maladaptions that occur as we are quite consistently overwhelming our resources and capacities…. interesting.

Trackbacks/Pingbacks

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    […] Read more: Autism Blog – PACE study confirms autism prevalence « Left Brain … […]

  2. Science-Based Medicine » When you can’t win on science, invoke the law… - May 13, 2011

    […] even accounting for very loose criteria used by the authors to define who might be autistic. As Prometheus put it: If the prevalance is higher among people compensated by the VICP, there is a basis for […]

  3. The – ahem – Rapture, and an update | autismjungle - May 22, 2011

    […] of them, including Mary Holland of anti-Microsoft protest “fame”, released a “study” claiming that children compensated from the Vaccine Injury Compensation Program had a higher […]

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