Another Hidden Hoard?: Vaccine Court, Better Diagnosis, and Another Concession
Since last week—last Thursday to be precise, when the parents of Hannah Poling Dr. Jon Poling and Terry Poling, held a news conference with their lawyer, Cliff Shoemaker, close by—the autism community has been discussing and debating just what the government said in its concession and what it did not. A recent post by Kev at Left Brain/Right Brain looks carefully at the laws and regulations for the vaccine court, as does Sullivan at Grey Matter/White Matter. Orac over at Respectful Insolence provides some of the background to the antivaccination movement and autism, the vaccine court, and the latest efforts by the “mercury militia” to “rebrand autism“: In previous years, there have been attempts to make the term “mercury poisoning” synonymous with autism; now there are similar attempts to do the same with “mitochondrial disorder” (and journalist David Kirby launched this latest effort to “rebrand autism” in his initial post about Hannah Poling in the Huffington Post back at the end of February).
As you may remember (or not; discussion about Hannah Poling has been endemic on autism blogs), a few days after Kirby’s first Huffington Post piece, Senator John McCain stated at a Texas town hall meeting that “‘there’s strong evidence’” that thimerosal, the mercury-based preservative, is responsible for the rising numbers of autistic children in the US. Proponents of a vaccine-autism link cheered; scientists, political commentators, and many others (myself included) spoke out at the specter of another anti-science president.
Senator McCain specifically connected vaccines to the increase in the prevalence rate of autism, which is now 1 in 150, according to figures released just over a year ago by the CDC. Autism professionals and researchers have consistently argued that, in accounting for the rising autism rate, it is essential to consider how broadened diagnostic criteria and better awareness about autism have contributed to the higher numbers of children diagnosed with autism. Proponents of the theory that vaccines or something in vaccines can be linked to autism routinely discredit the role of better diagnosis in the rising autism rate. They argue that there has to be some kind of “autism epidemic,” caused by an environmental factor, going on now and ask “where is the ‘hidden hoard‘ of adults with autism?”.
The answer to “where are all those adults with autism” is that they are right here, living and working among us, though many may well not have an official autism diagnosis. Again, better diagnostic tools and increasing knowledge about autism have led to more children being diagnosed with an autism spectrum disorder. Also, as Washington University professor of social work Paul Shattuck wrote in a 2006 article, as the prevalence rate of autism rates rose, the prevalence of mental retardation and of learning disabilities declined by “roughly the same amount in the special-education data,” as noted in the May 2007 Chronicle of Higher Education. Further:
Such trends suggest that states were using the new autism category to classify children who would formerly have been included in the mental-retardation or learning-disabled groupings.
“We can’t use special-ed trends to validly argue that there is or isn’t an epidemic,” says Mr. Shattuck.
That is, it seems that states and school districts are now using the category of “autism” to classify children who in previous generations would not have had that diagnosis. Similarly, parents may be seeking an autism diagnosis in order to qualify a child for more services. I have certainly heard parents talk about the pros and cons of having a child labeled with the “milder” label of PDD-NOS rather than the “more severe” diagnosis of autism. Because autism (in these discussions) is considered a “more severe” label, parents have opted for it in order to get more services for a child.
So here’s a question: The government has conceded that vaccines “aggravated” the “pre-existing mitochondrial disorder” that Hannah Poling had, after which she had symptoms of autism. Further, as journalist Arthur Allen noted in the March 7th Independent Streak and as a March 9th Philadelphia Inquirer article pointed out, since 1990, a number of families have received compensation from the vaccine court. In the several of the cases, Allan noted, the “injuries” of the children resulted in “autism-like symptoms.” Some of the cases involved a rare genetic condition, tuberous sclerosis complex, “in which tumors pop up in the brain and other organs, sometimes causing severe mental disability.” And:
Like mitochondrial disease, tuberous sclerosis can occur in the form of a regression in a normal-seeming child—and has been known to follow a shot. A senior court official tells me that a handful of TSC kids awarded by the court were, for all intents and purposes, autistic—though no one called it autism.
Now, though, would people be calling what these children have “autism”?
Just as more educators are now (according to Shattuck) classifying children as having autism for the purposes of special education and services, will there be more claims that a child who was compensated by the vaccine court and who did not then have an autism diagnosis, now be said (retroactively) to have “symptoms of autism” from a vaccine? Will such claims be made in order to make it seem that some hidden hoard of autistic children received compensation from the vaccine court?
At first glance, that’s a result that should make proponents of the hypothesis that vaccines or mercury can be linked to autism jump (or blog) for joy.
But if it is the case, those proponents will have to make a concession of their own: The diagnostic criteria for autism have changed over the past decade and a half. There is better awareness and this has contributed significantly to professionals and parents being better able to detect signs of autism. The prevalence rate for autism has increased because of better diagnosis and understanding of what autism is.
It’s a concession I suspect such proponents—the “mercury militia,” if you will—are not quite ready to make.
I look forward to the discussion.
Tags: asd, asperger, autism, david kirby, government, mercury, mitochondrial disease, Parenting, pdd-nos, vaccine court, VaccinesRelated Stories
POSTED IN: Cause, Diagnosis, Education, Epidemic, Politics, Vaccines
30 opinions for Another Hidden Hoard?: Vaccine Court, Better Diagnosis, and Another Concession
Cliff
Mar 11, 2008 at 3:38 am
Not to be tangential, but it is interesting here that many here (myself included, indeed) talk about autism as something, and yet I don’t think a strong definition of what we are describing has yet to come. I mean, to make the leap, are we even talking about diagnostic criteria anymore? I don’t think it takes a whole lot of effort to find flaws in the DSM, but what are we addressing? A universal? Certain attribution?
I’m not saying we aren’t addressing anything substantiative; indeed, I think to do so is to take a large step back in understanding. But what is that which we are addressing that would bind “autism”?
Just interested, is all.
Cliff
dkmnow
Mar 11, 2008 at 6:03 am
I’ve gotta’ say, I just love that term the have for us: “hidden hoard.” It’s so respectful … as is appropriate, of course, when speaking of other human beings. Perhaps I should show my appreciation for their concern and respect for us, by adopting similar language. I could say, for example, that the autism issue has become “infested” with anti-vax “rabble,” or some such. I mean, with all the caring and concern they show for our welfare, the least I can do is reciprocate, right?
I can then call my new use of language in speaking of them “an expression of affection.” I’m sure they’ll understand that.
Not.
dkmnow
Mar 11, 2008 at 6:05 am
D’OH! Sorry about the over-bolding … I botched my tags.
Chuck
Mar 11, 2008 at 7:48 am
There is no need for any concessions, “autistic like behavior” can be equally applied to DSM-III criteria and before better awareness as well.
Most parents know there was something wrong with their child before going to the doctor. “Better awareness” had nothing to do with that.
Chuck
Mar 11, 2008 at 7:59 am
Broadening the diagnostic criteria in the DSM-IV increased the probability of having “autistic like behaviors” and increased associated risks that are responsible for “autistic like behaviors” and autism as well. The broadening of the diagnostic criteria makes it impossible to find any scientifically proven “cause” both genetic and other.
daedalus2u
Mar 11, 2008 at 8:42 am
The purpose of the DSM-IV diagnostic criteria is to differentially diagnose mental disorders so there can be differential treatment so that outcomes in patients can be improved.
The purpose of the DSM-IV is NOT to provide scientists studying ASDs neat and clean data to study and make and test hypotheses.
We already know there are multiple causes of autism, Rett’s Syndrome being one for which the “cause” is unambiguously known. It is known there are ASD cases not caused by Rett Syndrome.
RAJ
Mar 11, 2008 at 9:32 am
The autism epidemic is a myth. Leo Kanner explained how myths like this occur in autism when he wrote an article in Behavioral Science in 1965 that reviewed the history of autism since his article that defined the disorder in 1943:
http://neurodiversity.com/library_kanner_1965.html
In 1965 he was furious about the autism explosion that ocurred in the early 1960’s when as he states in the article, all of a sudden a multitude of autistic children began appearing everywhere.
Children who were previously diagnosed with mental retardation, learning disabilities, psychological disorders etc. were all being lumped into the all too fashionable ‘autism’ label.
As he correctly states, unrelated groups can share isolated symptoms that are a part feature of the overall syndrome of what he named ‘infantile autism’ but these isolated quasi-autism symptoms are not specific to his definition.
In 1994 the APA redefined autism in the latest version of DSM-III-R as did the ICD-10. The Gold Standard Diagnostic tools, ADR-R ADOS were all based on DSM and ICD vastly expanded diagnostic criteria.
There is a large and overlooked diagnostic problem when diverse and unrelated groups such as mentally retarded children, with (Fragile X) or without (idiopathic) an associated genetic anomaly, learning disabled, developmentally delayed, hearing impaired, blind, introverted chidren, even Romanian orphans who were subjected to severe emotional deprivation all meet in one form or another Gold Standard diagnostic criteria for this ‘autism’ label even though their ‘autism’ can be described as Kanner described it as quasi-autism in that they share isolated symptoms (autistic-like) features that are not specific to autism.
It has rendered all serious research into causes and treatments as irrelevant.
Emily
Mar 11, 2008 at 9:41 am
RAJ, if the phenotypes are similar or share similar characteristics, then that does not render serious research into causes and treatments “irrelevant.” There are likely several paths to the autistic suite of characteristics, under the influence of several factors. Finding a factor that results in a few of these behaviors or even just one across the spectrum is relevant, even if that single factor doesn’t explain EVERYTHING we see.
My research background is into a disorder that is one of the most common congenital anomalies in boys. We know there is a genetic component; however, the anomaly can develop along a few different pathways that all lead to essentially the same outcome. That doesn’t mean that our investigations of one pathway in particular don’t inform us about the outcome; they even inform us about the other pathways. None of this is happening in a vacuum. Anybody who knows much about physiology knows that these channels all engage in “cross talk.” It’s one of the things that makes teasing out the pathways of behavior so complex.
Chuck
Mar 11, 2008 at 10:01 am
daedalus2u,
If your statement, “The purpose of the DSM-IV diagnostic criteria is to differentially diagnose mental disorders so there can be differential treatment so that outcomes in patients can be improved.” is true, then why was the diagnostic criteria expanded to overlap many other disorders already in the DSM-III? Isn’t that counterintuitive to differentiation?
Owl
Mar 11, 2008 at 10:37 am
It’s not counterintuitive to differentiation if the catagories that are being erased by expanding others failed to have any meaning anymore. Just look into the current debate on whether to erase the catagory of schizophrenia or replace it with another name. Scientists are pretty sure now that the category is over inclusive and leads to standard anti psychotics being routinely prescribed when those drugs are only sometimes appropriate. Perhaps the person fails to hallucinate at all and they are actually Asperger’s syndrome, perhaps the nature of their particular brain physiology demands a different style drug. Nobody’s come up with a good alternative structure of describing it, but eventually they will and we will probably erase the category, replace it with a narrower one, and take several parts now lumped with it and place them with either new ones, OR with old ones. Thus creating a “overlap” in expanding definitions of older diagnoses onto a overbroad diagnostic category that currently fails to be useful to science and health. Differentiation will just as soon expand a catagory when meaningful as break it up into lots of little ones because sometimes we learn the original catagory was meaningless.
Owl
Mar 11, 2008 at 10:42 am
And yes before AS was a common diagnosis it wasn’t unheard of for people to get diagnosed with schizophrenia because they lacked the normal socializing pattern but failed to show any hallucinating. Tony Atwood suggested at a conference I attended that there are still plenty adults in mental institutions with AS who were misdiagnosed because in the past Schizophrenia was the main category that described people who didn’t like to socialize. There goes a good part of our “hidden hoard”
Chuck
Mar 11, 2008 at 10:50 am
Owl,
Autism was in DSM-III. If the current DSM-IV criteria is replacing MR, then that would illustrate that the author’s of the ASD criteria are less aware of how to differentiate the different diagnostic criteria defined in the DSM-IV.
tracey
Mar 11, 2008 at 10:58 am
My comment veers far away from complex scientific debate. I am a mom with two little guys with autism. There was never any day that a fire bolt hit and they suddenly changed.
Their symptoms were slight at first and as they grew the symptoms became more obvious.
I wish that I could pinpoint a reason why, but the realist in me knows that there is no easy answer. And what may be the reason for one little girl, is not the reason for my two boys.
They met all their infant milestones, have always loved attention and showing affection to their family, smile, laugh, but remained silent and quirky. They never suddenly got sick or stood in a corner flapping. I honestly think that 20 years ago they would have labeled them with some kind of mental retardation and learning disablity.
As I attempt to learn more I become even more convinced that this debate is not simple and is as complex as each child. I have reached the point where I don’t really care about the “why” but I care about getting them the services they need to have a productive life.
Laura
Mar 11, 2008 at 1:21 pm
The American Association of Pediatrics characterizes tuberous sclerosis as a syndrome associated with ASD. Ditto for Fragile X. Do we want to vote Fragile X off the island too?
You’re right, though. We’re on the cusp of a widening of the net or, as Orac put it, a new rebranding campaign. Autism is susceptible to manipulation of this nature because it’s defined as a constellation of symptoms, and not by it’s cause.
Chuck
Mar 11, 2008 at 1:40 pm
The three parents of Fragile X children that I have spoken to all agreed that they tell everyone their child DOES NOT have ASD. One very friendly, civil parent of a child in Special Olympics went ballistic on the doctor who mis-diagnosed his son with autism.
AnneC
Mar 11, 2008 at 1:50 pm
One thing: “Autistic” seems to me to be more a description of HOW a person is more likely to perceive and learn than about WHAT they “do” behaviorally or concrete skill-wise. I think a lot of the confusion that exists around trying to “define autism” stems from the fact that people keep trying to do so in terms of what autistic people “do” (or don’t do).
I think it’s pretty clear that autistics do have particular tendencies toward how we learn, perceive the environment, process information, etc. These tendencies can result in similar-looking behavioral manifestations (sorry for the clinical language there but I can’t think of another phrasing right now) as well as in particular underlying strength/weakness patterns. However, being autistic does NOT mean that a person must be either eternally capable or eternally incapable of doing a certain thing, or that a particular outward behavior must always manifest all the time.
I’m always amazed at how much I can relate to in what I see people writing about their autistic kids, even when those kids are totally or mostly non-verbal or when they aren’t kids anyone is (rightly or wrongly) expecting to attend college someday. There are just all these little nuanced things — descriptions of what objects in the environment are paid attention to, what details the person notices, what the person is afraid of, how they seem to perceive time, etc. And I know those things are extremely difficult to quantify in a textbook entry, but they’re undoubtedly “real”, IMO.
Deb K
Mar 11, 2008 at 2:03 pm
My daughter has always been on the edge with Autism. She is loving,huggable ,social with all people.She enjoys the simple things about life but as of now its not genetic? She is not very verbal but her non-verbal comunication is off the charts great.I enjoy her personality very much and so do all that meet her! Yes she is different Autistic maybe? but I agree they should have strong sub- groups of Autism.
Emily
Mar 11, 2008 at 2:43 pm
“Their symptoms were slight at first and as they grew the symptoms became more obvious.”
This was our experience, too. I posted on another comment here that the “dimmer switch” analogy went the other direction for us, for both of our sons who have these issues: it was like someone turned UP the switch, gradually, on their oddities.
S.L.
Mar 11, 2008 at 3:15 pm
It is astounding when Jenny McCarthy and so many others admit they don’t know of any adult autistics. I knew adult autistics before having my daughter, and I’ve come to know more since her autism diagnosis. Are they oblivious and close-minded? Okay, I know that answer already!
Tracey said…
“I have reached the point where I don’t really care about the “why” but I care about getting them the services they need to have a productive life.”
Great point, I wish others would see this. All the time (& money) wasted on the causal aspect, as all of our children grow older. What will be there tomorrow for my child?
Kristina,
Thanks for cluing me i on the Forbes article, that was very cool. I have a question, you’re better suited to answer: Was mercury NOT in vaccines prior to the 90’s? Just seems all of these people who claim it was mercury/vaccines, their children all received vaccines from the early 90’s on. Do the anti-vaxers feel then no child was “poisoned” prior to 1990? Or, am I missing something?
Chuck
Mar 11, 2008 at 3:57 pm
S.L.,
There were fewer vaccines that contained mercury before 1990, so they would account for a smaller percentage of the “hidden hoard” compared to the current percentage of the “newly diagnosed”.
tracey
Mar 11, 2008 at 4:28 pm
A dimmer switch is probably a good analogy. I went to the Florida CARD Conference and a doctor from Yale actually spoke a little about this. They said that they believe these symptoms are around sooner, but less obvious in infants and the magic age of 18 months-2 years for a diagnosis happens, because of the natural development of toddlers.
All children actually slow down a little. From what they learn and grow, they don’t do as much as they do that first year-year and a half, and then as children develop or don’t develop language, certain aspects become more clear.
With my first born, I just had no clue what to look for and just thought he was a late talker and quirky. With my youngest, I knew better.
Any boy do I wish people like Jenny McCarthy would be as outraged about the fact that those of us who don’t make millions of dollars can’t get services for our chidlren…she always neglects to discuss the amount of therapy her son has received. We are just grateful that we have grandparents who can help….our children would be at a huge disadvantage otherwise. My heart breaks for all the kids who miss out on therapy because of money.
Interesting note, I spoke with my CARD representative about school etc.. and she said that in our state the ASD criteria is changing, to make it easier for kids to get in-school services, but she said some of these chidlren do not have autism. A lot of kids with Asperger’s were missing out on services, but she said that she is seeing that a lot of these kids don’t truly have any form of ASD.
And Anne…you brought up something that made me think about my boys. There are certain aspects of their autism that is very similar, how they verbally are developing, their stimming behaviours but I think too that some people forget personality. Dalton is sweet, gentle and tender hearted, Jake is sweet, rough and stubborn…or as I like to say “determined”. People want to classify them and stick them both in the same box, but they are two different boys. You are right, they want to look at “what they can and can’t do” instead of looking at them a “who” they are. Whenever I speak to some people in the school system about my expectations they look at me like I have three heads. My new phrase (I have stolen from someone else) is “they don’t have a learning disability, you have a teaching disability” The sad thing is that they want to write their future now…they are 2 and 5 years-old…no one can define the adults they will become.
Kristina Chew, PhD
Mar 11, 2008 at 5:32 pm
@S.L.—I’m answering your questions slowly, just wanted to get started! You asked:
“Do the anti-vaxers feel then no child was ‘poisoned’ prior to 1990?”
No—for instance, Dan Olmsted has written quite a bit about the children in the 1943 article by Kanner and suggested that they had other types of “poisoning.” Here I referred to his discussion of Still’s and Pink’s and he’s elsewhere written about how some of those children in that original Kanner study had parents who were chemists or other positions that involved them working with chemical and toxic substances.
One way to read what Olmsted has written is that he is “reading back” retroactively and re-diagnosing autistic children from the past as having had some sort of poisoning—not necessarily from a vaccine. It’s a similar move to how Kirby has been trying to redefine (”rebrand” as Orac puts it) autism as a mitochondrial disorder and, last year, as some kind of neurological damage caused by toxins.
Glad to see you get that mention in Forbes.
Deb K
Mar 11, 2008 at 7:14 pm
Many more shots where given about 1997-98? (about)They added too many and didnt monitor the effects.this is what put the children at risk. Then you add in hep b shot that was defective (put out by merk)what a mess this had 8 times the amount of mercury it should have had.(read this in the paper a few years ago.)Small snippet in the back of the press here.Had to add this :) Look,not everyone has the same type of Autism. Doctors need a new guidline we have to push for this. Tracy thanks for the tips! The school thing is such a joke! I cant stand when I hear what you all go through. We have no contained class here too small of a school. Very difficult time for us! She needs this.
Kristina Chew, PhD
Mar 11, 2008 at 8:58 pm
S.L. already quoted Tracey but I had to again:
“I have reached the point where I don’t really care about the “why” but I care about getting them the services they need to have a productive life.”
That’s sums up why I’m sitting in this rental condo right now…….
tracey
Mar 12, 2008 at 9:50 am
I hear you Kim.
I just started a support group where we live and school frustrations and finances are the number one stresses. I probably have an emotional breakdown about once a month.
Funny, my husband went to the doctor yesterday because he just hasnt’ been feeling well. The doctor said that he seemed fine, so, asked if he was getting enough sleep or under any major stress…hmmmm, you think???
I just wish all these famous voices would put some focus on this issue.
Deb K
Mar 12, 2008 at 1:27 pm
Sometimes when you have money and pay taxes the (amount of a teachers salary)It does not change a darn thing. Schools are not doing enough ever are they?NJ special services Atlantic county is a disgrace. Two doctors that care for my daughter dont think its a very good school !!Now what??Been to a lawyer well its not so good unless we move!
Kristina Chew, PhD
Mar 12, 2008 at 2:51 pm
@tracey,
Regarding those emotional breakdowns once a month—-more than know how that feels. Knowing that my son is in a school where he’s happy and his needs attended to and understood—that’s why I no longer have this awful gnawing pain at the bottom of my stomach and why I don’t keep checking my cell phone to see if the school is calling. Even just being able to go to the grocery store and knowing that Charlie won’t try to eat the food or get upset when he can’t get something he wants—-those are reasons that stress has lessened for me.
RAJ
Mar 12, 2008 at 4:34 pm
“The three parents of Fragile X children that I have spoken to all agreed that they tell everyone their child DOES NOT have ASD. One very friendly, civil parent of a child in Special Olympics went ballistic on the doctor who mis-diagnosed his son with autism”.
Not every peiatrician considers Fragile X to be any part of an autism spectrum disorder. Any social problems they have is shyness and social anxiety, not the core defining feature that Kanner described, an indifference to the existence of others including parents,siblings and primary care givers.
What creates a potentially devating problem is those researchers who misinterpret mentally retarded Fragile X boys as ‘autistic’ is that they are now using drug therapies that hclaim may be applicable to autistic children without Fragile X.
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