David Kirby – what have you done?

20 Dec

I want to follow up somewhat on Joseph’s techncial takedown of David Kirby’s recent act of intellectual suicide. On the Huffington Post he wrote a bewildering post called ‘Bad News for Mercury Defenders‘ which discussed how Dan Olmsted’s recent sleuth-like skills led him to talking about a report that undermined studies conducted using VSD data.

Let us begin:

Next June, when the Vaccine Trial of the Century gets underway in Federal Claims Court, government lawyers will defend the direct injection of toxic mercury into infant children by repeating the well-worn mantra that “five large population studies” in Europe and the US have completely exonerated the vaccine preservative thimerosal as a possible cause of autism.

My, my – vaccine trial of the century eh? I’ll have to remember that one when the verdict comes back. This is crap. No lawyer will have to defend the direct injection of mercury into infant children. What they will have to do is counter the accusation that thiomersal in vaccines caused autism. Kirby (as usual) presents a highly distorted view to his adoring fans. The truth is that as in all legal cases, the burden of proof lies on those making the accusation. The accusation is not that mercury is dangerous. the accusation is that it caused autism.

Again:

The VSD study is constantly held up by public health officials as EXHIBIT A in the defense of injecting mercury into little kids.

No, its not. If its held up as anything, its held up as a study that refutes the link between thiomersal in vaccines and autism. Seriously – isn’t this man a journalist? What’s difficult to grasp about this concept?

Kirby goes on to diss the remaining studies and surmises this section of his blog thusly:

With so many holes shot through their “five large studies” defense, the government lawyers will be left to argue that autism is purely genetic, that there is no environmental component, and that the rates of illness have not “really” gone up. We are simply better at recognizing and diagnosing the disorder, that’s all.

Well, if that is the case, the mercury-defense lawyers should have no problem proving it. All they need do is produce irrefutable evidence that 1-in-166 American adults of ALL ages (and 1-in-104 men) fall somewhere within the autism spectrum disorder, at the same rate as kids. But they can’t, and they won’t.

I can only surmise that Kirby is a big fan of the Wizard of Oz and had strawmen on his mind whilst writing this. Yet _again_ he fails to grasp the fact that what this trial is about is simply if thiomersal caused autism. All the vaccine makers have to do is refute the ‘science’ from the other side. And lets be honest, after the RhoGAM smackdown that’s going to be about as difficult as falling off a log. It’ll be surprising if any of the ‘scientific’ evidence ever gets past a Daubert hearing as it failed to do in the RhoGAM case.

And whilst we’re at it, no one has said anything about arguing autism is purely genetic. Why in Gods name would _that_ be required? Autism may well have an environmental component – I know I think it does – but unless Kirby is trying to say that the word ‘environment’ is interchangable with the word ‘vaccine’ then this is also just…meaningless.

And lets get back to the clinical science for a moment:

Instead, one must also consider biological studies (animal, clinical, test tube) when assessing causation. And that’s where the plaintiffs will come to court armed with reams of published evidence – produced at Harvard, Columbia, Davis, etc., and printed in prestigious journals – to suggest a highly plausible biological mechanism that would link a known neurotoxin with a neuro-developmental disorder

Has no one broken the news of the thiomersal/RHOGam/autism case to Kirby? _All_ the ‘science’ that Kirby is talking about here was brought to that trial (follow the link and you can download the entire Daubert findings and read the studies presented for yourself) and was cumulatively dismissed. Here’s what the presiding Judge stated:

However, upon being subjected to extensive cross examination, much of Dr. Geier’s analysis, based upon his collective review of a motley assortment of diverse literature, proved, in the Court’s view, to be overstated……[Dr. Geier] could not point to a single study that conclusively determined that any amount of mercury could cause the specific neurological disorder of autism.

So, that’s exactly what effect eliminating VSD based studies will have on the respondents case. None whatsoever.

But what about the plaintiffs? They have to prove beyond reasonable doubt that thiomersal in vaccines caused autism. And as Kirby helpfully points out:

….They wanted to know if the US database, the Vaccine Safety Datalink (VSD), could be used to compare autism rates in kids before, during, and after the gradual removal of thimerosal, which began in roughly 2000.

Unfortunately, the answer was a resounding “not really.” A laundry list of “weaknesses” and “limitations” associated with the database would render such a comparative analysis “uninformative and potentially misleading,” the panel said, (though it did suggest some excellent ways to re-approach the data going into the future).

Some weaknesses had to do with changes in medical practices over time. But many of the limitations sprang directly from the poorly designed VSD study itself….

So what studies could be killed off by this examination. Well, there are two actually. The first one is Verstraeten et al (2000) which is the one we’ve been discussing so far and Kirby’s been bashing. The other one is Geier and Geier (2005) which they plagiarised from Verstraeten et al (2000). Oops.

Why does the nuking of Geier matter whilst the nuking of Verstraeten does not? Burden of proof, which lies with the prosecution. The Geier paper will be used to help _establish_ causation which is vital, not prove it didn’t happen, which is not called for. The Geier paper (which was crap anyway, lets face it) has now been neatly and effectively taken out by Olmsted and Kirby. Don’t Americans refer to that as friendly fire? By removing Geier 2005 from the playing field, the prosecution are now left with clinical science which has already failed one Daubert hearing (I believe the legal term is ‘setting a precedent’) and any epidemiological data they can scrape together from VAERS and CDDS.

As far as VAERS go, I’d like to remind people of my own experimentation with VAERS. And as far as CDDS data goes, lets remind ourselves one more time what Kirby has said about CDDS data:

“if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.”….total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

And here, helpfully provided by Dad of Cameron are the ever-growing numbers in that cohort.

There’s also the small matter of The Simpsonwood Conspiracy. To quote Joseph:

….it completely undermines the foundations of the Simpsonwood conspiracy theory. You see, Verstraeten et al. were supposed to have found significant associations between thimerosal and neurodevelopmental outcomes beyond those that were reported in 2003. But now Kirby is endorsing a NIH report which says that ecological studies on the VSD database, specifically those done by Verstraeten et al., are likely flawed.

In other words, without the VSD data being good, the Simpsonwood Conspiracy is a non-starter.

Amazing.

48 Responses to “David Kirby – what have you done?”

  1. Joseph December 20, 2006 at 18:13 #

    I seriously wonder if Kirby was drunk when he wrote that post. You know, with the first CDDS report of 2007 about to come out in a few weeks.

  2. Bonnie Ventura December 20, 2006 at 19:54 #

    Kev, one small correction: “beyond a reasonable doubt” is the standard of proof for criminal cases. In civil trials, the plaintiffs need only prove their case by a preponderance of the evidence.

    However, given the complete lack of anything that even remotely resembles scientific evidence from the mercury conspiracy folks, it’s clear that they won’t even come close to carrying that (or any) burden of proof.

  3. Kev December 20, 2006 at 20:16 #

    Thanks Bonnie :o)

  4. Ms Clark December 20, 2006 at 21:08 #

    Maybe he was trying to deliberately “shoot” the mercury parents and their lawyers “in the foot,” in the end if it turns out that 90% of what Kirby stated as fact was dead wrong, who cares? He goes back to writing travelogues and stuff for the Advocate and lives happily ever after. He has not attachment to autism, he told me that in an email long ago. Do ther parents get a refund of the bucks they have given Kirby to speak at this or that rally? No.

  5. Joel Smith December 21, 2006 at 02:24 #

    Besides, even if he loses all credibility, he’ll still have followers. This is religion, not science. I truly think that some mercurians would drink purple kool-aid if a prominent mercurian leader came up with a “reason” it would reduce the mercury in their kids.

    They are also already shifting to environmental mercury anyhow. Vaccines are old news, even in the mercurian camps. Now it’s the tuna! (too bad that mercury rates in the environment have been declining for most of the western world).

    The graph I still want to see is autism diagnosis rate vs. any decent consumer price indicator.

    As for the legal journalism, law is one area that is particularly bad in reporting, even in the major newspapers. For instance, how many times have you read that a US appeals court found that someone was innocent? (in the US, appeals courts, even the supreme court, cannot declare someone innocent or guilty, they can only say that they had a valid trial or that the person had an invalid trail and thus needs to be heard again in the first level court – only first level courts can actually weigh evidence, other courts examine questions of law [not the facts of the case]). Confusion between preponderance of evidence and beyond a reasonable doubt (sorry, Kev!) is also common. So I wouldn’t hold that against Kirby too much – he’s no worse than any other legal reporter in that regard.

    So, I close with: Mercurianism isn’t dead. It’s just changing focus, and will get some new leaders.

  6. Richard December 21, 2006 at 03:57 #

    Al Gore, in his film, “An Inconvenient Truth,” has a wonderful graph that plots the number of scientific journal publications that argue against the existence of global warming versus the number of mainstream media articles that suggest global warming does not exist. The bottom line is that virtually no scientists argue against global warming, but the media treat global warming as if it were in question. He even has to get up on an elevator to reach the top of the graph showing the number of media articles. Has anyone done such a graph for the mercury/thimerosal issue? If you exclude the Geiers, I would guess the number of peer reviewed articles that suggest a link between autism and mercury would be very small compared with those that argue against it. It might be useful if anyone was willing and able to take on such a task. Or else, possibly, it would not be useful, since most scientists don’t even bother to address the alleged linkage. The articles on that axis might be small. Just a thought.

  7. Kev December 21, 2006 at 12:35 #

    Even more amazing – despite (as Kathleen Seidel demonstrates) claiming being in this for ‘the autism parents’, his latest bewildering rant on HuffPo doesn’t use the word ‘autism’ once.

    Could he get any more redundant?

  8. Ross Lumbus December 21, 2006 at 14:02 #

    OK. If I get this correctly, the mercury supporters can’t prove their case and the anti-mercury supporters can’t prove that they are wrong? So what does this prove?
    Maybe the people who believe in the whole thimerosal in vaccine causes autism are wrong…or maybe they are right.
    I don’t get the whole point of this post at all. If they are wrong then let them do what they are doing whilst they attempt the best way they can to help their autistic children but don’t agree or actively support them, safe in the knowledge that you will be doing so much better. If they are right maybe they will offer opportunities for people with autism everywhere.
    For the record here. I am a diagnosed high functioning autistic parent of two children (one with HFA too). I do not personally believe with this cause. I do not understand why parents who do are getting hounded for doing the best they can do try to help their children. Yes I do post on hating-autism. Yes I do clash with JB and have disagreements over some of his postings. I do think though that he is an honest, passionate man committed not only to helping his son but those of other people. Why not leave him and others to it?

  9. Kev December 21, 2006 at 14:28 #

    Hi Ross,

    _”OK. If I get this correctly, the mercury supporters can’t prove their case and the anti-mercury supporters can’t prove that they are wrong? So what does this prove?”_

    Not a damn thing.

    _”I don’t get the whole point of this post at all. If they are wrong then let them do what they are doing whilst they attempt the best way they can to help their autistic children but don’t agree or actively support them, safe in the knowledge that you will be doing so much better. If they are right maybe they will offer opportunities for people with autism everywhere.”_

    Hmm. Unfortunately, what they are doing is often dangerous. A five year old boy died last year after having a DAN! recommended chelation treatment. Other children are being treated with Lupron which is something used to treat precocious puberty – it can have pretty dramatic side effects. Autistic kids have been hospitalised from things like Vitamin overdoses – all suggested by the DAN protocol and all tied in to the anti-vaccine belief.

    There is also the fact that slandering vaccines in the way that Kirby is doing is leading to people not using them. Kids are now dying and being hospitalised by vaccine preventable diseases both in the US and UK.

    I further don’t see how ignorance can lead to further opportunities? Only decent evidence based science can do that.

    _”I do not understand why parents who do are getting hounded for doing the best they can do try to help their children.”_

    Which parents are being hounded? You mention you think John is an ‘honest, passionate man committed not only to helping his son but those of other people.’?

    It may surprise you to know that John has compared my six year old autistic daughter to a monkey when I described how well she was doing on a PC. He has also called me and other people child abusers for not chelating our kids. That in fact is how I first come to know of him. If you want to criticise someone for hounding then that’s your right, but please realise that John instigates and engineers all of this bad feeling. His latest trick was to join the AWARES conference using my daughters name as his user name. This is a man who gets his kicks laughing at and impersonating a six year old autistic girl. Its my opinion that anyone who would stoop to such a level has something very very wrong with them.

    I will happily provide links to all these events if you so desire. When you ask John about them, please remember to ask him for the links that back up his denials.

  10. Joel Smith December 21, 2006 at 15:00 #

    As for a more general concern (personally I think John has relatively few supporters nowadays, and has already lost the battle he was trying to fight, so I don’t try to fight against John) is the more general concern:

    1) What does the current mercurian mindset, however sincere, teach autistics? Unfortunately, it teaches autistic children that they are broken and in need of fixing, to release the beautiful child within. When they aren’t fixed, what then? If the beautiful child never got out, what does that say about the “ugly” child (or adult) on the outside?

    2) There are good educational methods for autistic children out there, that help us to grow into the best autistic adult possible. The focus on the cure detracts from the reality that we aren’t fixable, and therefore need to learn and grow as we are.

    3) It costs parents a tremendous amount of time and money to search after these cures. Raising an autistic person is hard enough without the need to feel guilty about giving your kid medical care or “not doing enough”. Most parents of autistics don’t have tons of money, either, and that money should be spent on things that work – not quack treatments and therapies. I believe speaking against the quacks *is* productive, regardless of how sincere they are, because every dollar spent by a parent on products peddled by the quacks (even something as relatively low cost as a book or seminar) is money they don’t have for things like food, proper education, assistive technology, and other things that we know work.

  11. Ross Lumbus December 21, 2006 at 15:12 #

    John thanks for the reply. I do appreciate your honest and open discussion on this subject.
    Now as to the parents being hounded, yes this does include John and those on his site. It does also include the parents such as yourself and others on this and other sites from people like the hating-autism site. It hasn’t been one-sided.
    As to what it does or doesn’t prove you are absolutely correct. This was precisely what I was trying to get at.
    It is terrible that children have died from the treatments you mentioned. I was not aware of this and certainly am not happy with it. I am also aware that many parents have found that some of these types of treatments have “seemed” to have a positive effect on autistic childrens lives. I had endorsed the treatments on this basis. Now the question is was it the treatment or something else having that effect? (It might have been something else such as other strategies, natural development, or the like) Unfortunately it is harder to tell.
    As to what you say John has done to you. No it isn’t nice – rather mean in fact. What bought it on? Was it all of a sudden out of the blue or did you do something to him, any of his supporters or his cause and upset him?
    I have clashed with John a couple of times and certainly don’t agree with everything he says. At the same time he has got some qualities which I find admirable. I don’t expect after having done what he has done to you that you could see these and I am not blaming you for this.
    BY all means do send in those links I would be interested in viewing this.
    I do see on different blogs to very strong personalities with opposing opinions tend to clash very hard and the fallout is seldom nice. After that it is a standoff situation with neither willing to give ground and prepared to get as nasty as posible to the other party. Maybe, just guessing, this might be one of those situations?
    Anyhow thanks again.

    Rossco

  12. margaret December 21, 2006 at 15:15 #

    Please forgive my question if it is inappropriate to ask in this topic of discussion.

    After reading Joel’s comments, the question came to mind.

    Do people who believe in Neuro-diversity believe there has been an actual increase in autism? If so, why? If not, why?

    Thank you.

  13. Joel Smith December 21, 2006 at 15:49 #

    First, there is proof that mercury vaccines aren’t causing autism. There hasn’t been a reduction in autistics since 2000, when almost all vaccines stopped having mercury in them. We are down to a pre-1960 level of thimerosal, even with additional vaccines like the flu shot being given routinely (as it should be – flu can kill children). The number of diagnosed autistics is still increasing, when looked at either in absolute numbers or in population percentages.

    Secondly, the autism rates in the developed world do not differ significantly, nor does the age distribution. Yet not every country has the US FDA in charge of things, and vaccines differ significantly between countries. This also indicates that it’s unlikely to be an environmental pollution factor that causes autism, as even air pollution is not distributed evenly around the world.

    That all said, on the issue of increase in autism, the jury of scientific inquiry is still out on that one, although I think the fact that the diagnosis was changed in the 90s, special education services in many western countries for autism increased significantly in the 90s (prior to the 90s, you might not have got any additional services with an autism diagnosis), and doctors have been learning about the condition (before the 90s, doctors didn’t know about it pretty much, and older doctors may not have went back to school to learn about it).

    In addition, almost all the autistic adults I know were diagnosed in the last 10 years – yet we know autism is a life-long condition. Why weren’t they diagnosed at age 3 or whenever? Simply put – no one was looking for it.

  14. Kev December 21, 2006 at 16:00 #

    Hi again Ross,

    As I said, my very first knowledge of John Best was when I came across a post of his stating that all parents who didn’t chelate their children were child abusers. That’s an exact quote. Prior to that I’d never heard of the guy.

    As far as our relationship goes, as Joel states, I’ve given up reading his blog and/or trying to reason with him. John is not interested in reason or debate.

    As to anything I may or may not have said to cause him to lash out, if he lashed out at me then that’s fine. I’m a big boy, I can take it. However, he has involved my daughter in a very personal and disturbing way. That’s something else entirely that goes way beyond the issues that we disagree about. Laughing at disabled children or assuming their identity is a cowardly act. John has also declared an affinity with a man who called adult autistics ‘fucking retards’.

    He is a troubling man, he does not care one jot about autistic people. It is entirely your choice to post at his blog but I’d caution you to be careful about the personal information you share there. John has been banned from numerous autism related groups because of his behaviour.

  15. Kev December 21, 2006 at 16:04 #

    Hi Margaret,

    I’m not sure how possible it is to answer that question in the way I think you mean it. The bottom line is that there is simply not enough evidence to compare the rates of today with. Nobody did epidemiological studies 30 or 40 years ago. The science cannot tell us that there has or has not been an ‘autism epidemic’ for that reason.

    I guess I can only ask you a returning question: what leads you to believe that there _has_ been an increase in autism over the last 10 – 15 years?

  16. margaret December 21, 2006 at 16:23 #

    Nothing scientific really. My own life experience I guess. I never met an autistic individual in my entire life.

    While at least nobody with the label autism, and nobody who acts like all the kids I’ve met with autism.

    There was one boy I went to grade school with who was brilliant, but socially inept.
    His parents were both professors at the local University. In hindsight, I would guess he has Asperger’s syndrome. I seriously doubt he was ever diagnosed as a child with that. Although, he could have but I have no way of knowing either way. He too, is a professor now in mathematics I believe.

    Anyways, I never met anyone my entire life with autism- full blown autism- Non-verbal, stimmy, self-injurious etc…like my son.

    I just can’t fathom that there were all these kids out there like my son, and I just never noticed them.

    It’s the 1 in 166 number. If you look at US dept of Ed stats over the last 15 years or so, and CDC numbers it really is mind-blowing, at least to me. First the CDC denied there was an increase for a long time and now they acknowledge there is one. Why would they do that?

    I hope I have not offended anyone with terminology I have used. I really don’t know what is offensive and what is not here.

    My intention is not to offend, but to maybe learn something, and to share if I feel I have something worth sharing.

  17. Joseph December 21, 2006 at 16:36 #

    Do people who believe in Neuro-diversity believe there has been an actual increase in autism? If so, why? If not, why?

    I can’t answer that, but I can tell you what I believe and why. I don’t think there has been an increase that can be called an epidemic. A small real increase is possible due to genetics (e.g. because of advancing father’s age). There is a clear association of some environmental factors with autism, but none can be shown to be “epidemic” producing.

    Most of the “epidemic”, the bulk of the increase, occurred in the 1990s. The fastest growth occurred in the late 1990s. I believe this correlates quite nicely with the growth of the internet. So my opinion is that growth in autism diagnoses is due to increased availability of information, and increased availability of specialists.

    This also matches quite nicely with higher administrative prevalence in the first world vs. third world and urban vs. rural areas.

    The prevalence of autism in adults is high. How I conclude that is documented here.

    There is substantial evidence of a cultural shift from administrative data as well, e.g. a sharp decline in the prevalence of mental retardation among autistics in the 1990s. I document this and many other arguments here.

    After looking at the data and studies in detail I can say with certainty (not just because of a hunch) that there is no such thing as autism epidemic.

  18. MAría Luján December 21, 2006 at 16:40 #

    Hi Joel
    My analysis is totally different from yours but I do think that your questions are pertinent.
    Are you interested on different answers than you probably heard before?
    Thank you in advance
    María Luján

  19. Kev December 21, 2006 at 16:44 #

    _”My intention is not to offend, but to maybe learn something, and to share if I feel I have something worth sharing.”_

    Cool – me too :o)

    _”I just can’t fathom that there were all these kids out there like my son, and I just never noticed them.”_

    _”It’s the 1 in 166 number. If you look at US dept of Ed stats over the last 15 years or so, and CDC numbers it really is mind-blowing, at least to me. First the CDC denied there was an increase for a long time and now they acknowledge there is one. Why would they do that?”_

    I think there are a few reasons for that, cultural and to do with definition. Over here by the way, a group in London recently postulated a 1 in 100 figure.

    I think a lot _is_ to do with better diagnosis. That doesn’t simply mean that doctors are better at recognising autism (although I think they are), it also means that there are more doctors who are specialised in being able to diagnose autism. Simon Baron-Cohen told an interviewer that 20 years ago there were only a very few centres in the UK set up to diagnose autism. Now there’s one in every town. It stands to reason that more people looking will result in more people being found, don’t you think?

    In the US it wasn’t until the early 90’s until the Dept of Education categorised autism as a separate entity. Again, to me, its obvious that once that floodgate is opened, it will quickly fill up.

    What it is to _be_ autistic has also (diagnostically) altered very recently. That will also have an effect on numbers.

    Now, as to the cultural aspect of there being more autistic people, this theme (as well as the above themes) are explored very thoroughly by Georgetown University professor of Anthropology Roy Richard Grinker in his new book ‘Unstrange Minds’. He uses the example of Korea, India and South Africa to hold a mirror up to our own past in the West. Here’s a passage from his book:

    _”When [Milal School] was being built in the mid-1990s, some of the wealthy residents of this quiet neighborhood south of the Kangnam River in Seoul picketed the site, cut the school’s phone lines, physically assaulted school administrators, and filed a lawsuit to halt construction, because they believed that the presence in the neighborhood of children with disabilities would lower property values. The school opened in 1997, but only with a compromise. It was required to alter its architecture so that the children were completely hidden from public view. Some of the protestors were brutally honest. They said they didn’t want their children to see or meet a child with autism.”_

    That’s how the UK and US were in the 80’s. It would be amazing if you _had_ met lots of kids with autism in my opinion. Society demanded we kept them locked up and out of sight. The idea of mainstreaming wasn’t even heard of.

    If I can offer a slightly more contemporary (but unweildy) example: when I was growing up I only knew 2 or 3 Asian kids my own age. Now I know lots more. Its not that there were less Asian kids about then, its that racism was bad enough for their parents to keep them away from mainstream schooling. Now its not so bad, racism is thankfully on the decline. The culture has changed, all that’s happened is the hidden people are more visible.

  20. Joseph December 21, 2006 at 16:46 #

    John Best Jr. said the following over at Abfh’s blog recently:

    “The damn autism got in the way of my golf game and cost me a fortune by not having the time to play horses.”

    Ross, if you think he’s just trying to help, you must not be familiar with his views. I don’t think he represents any worthwhile POV of a subset of the autism community. He’s just an annoyance really, along with Jonsmum and a couple others.

  21. Joel Smith December 21, 2006 at 16:48 #

    There are a few reasons you’ve seen the people now, and haven’t before.

    First, you have an autistic child. So your social life is shaped by that fact. You’re more likely to be around autistic children than most.

    Second, when you were a kid, anyone who couldn’t attend classes without almost no assistance wasn’t in school. They were in a special school, an institution, left at home, etc. IDEA is a new law. The requirement for schools to have services for autistics is also new. Would you send your kid to public school if they expected him to function exactly like everyone else? I doubt it.

    Third, most autistics who don’t speak as young children *are* speaking at age 13. Not all, and I know several adults who don’t speak who are my age or older. But statistics tell us most will speak eventually. I’m in that category – I didn’t speak until just a couple weeks before I entered Kindergarten, and I still don’t use speech all the time (so I started speaking earlier than some, but certainly much later than “normal”).

    Forth, You probably don’t see adults who don’t speak in the community either – they are in general locked in institutions, and when living in the community they often are not going to the grocery store, to concerts, etc.

    I think the fourth thing is something that really needs work. I wish people were as passionate about that as they are about chelation.

    I know, from personal experience, that when I go to a doctor and explain I’m autistic (as this does have an effect on things like, “Can I explain what is wrong with me, or do you have to do some digging yourself?” I also typically have to explain what my communication device is if I choose to use it instead of speech), I’m met with comments like “What is that? What do you mean?” So autism isn’t something most people know about yet, not even in the medical field.

  22. Bonnie Ventura December 21, 2006 at 16:50 #

    Margaret, the 1 in 166 number includes Asperger’s syndrome and all of the other autism spectrum conditions. Until recently, only non-verbal children and those with minimal speech got the autism diagnosis, and that number was much smaller. As Kev said, there’s no good way to compare the past and present numbers because the criteria for diagnosis have become much more expansive over the years.

    The main reason why you wouldn’t have noticed non-verbal autistic children when you went to grade school (and again, that number is much smaller than 1 in 166) is because they wouldn’t have gone to your school. Some were sent to institutions or specialized schools, while others were taught at home. Special education programs that allowed non-verbal autistic children to attend their neighborhood schools didn’t exist in those days.

  23. Joel Smith December 21, 2006 at 16:52 #

    MAría Luján,

    I’ve most likely heard the research you would cite. I’ve been speaking out against the mercury hypothesis for years, well before it gained popular acceptance in the autism world. However if you can provide any evidence that directly supports the Thimerosal (not general mercury)* causes autism (not general neurological disability) hypothesis, that was published in a well respected peer-reviewed journal, I would be interested. That might sway me.

  24. María Luján December 21, 2006 at 17:02 #

    Hi Joel
    My ideas are much wider than focused on the thimerosal hypothesis. I do think that this hypothesis has demonstrated to be not adequate in terms of CAUSES.
    Do you prefer I post here or do you prefer privately by e-mail?
    I am also the mom of an autistic child. I live in Argentine.
    Thank you for your answer
    María Luján

  25. margaret December 21, 2006 at 17:19 #

    Here’s what’s so confusing and makes it really hard to debate/ discuss an issue like this. You can provide me with statics, studies, evidence to support your point and I can provide you with statics, studies, evidence to support an alternative point. Who would be right?

    There is so much information out there on autism. Who decides what’s a credible source of information is? What’s a better peer-reviewed journal? How do you decide if a source is credible? If it supports your viewpoint than most people would say it’s a good source.

    What I’m saying is people’s perceptions of facts and realities vary tremendously.

    Joel stated we are at pre- 1960’s level of mercury in vaccines. I could find information to contradict that. So who’s right?

    I agree disabled children were hidden away in Special schools, classrooms in the corner of the school, and in institutions back when I was in school.
    Which could account to some extent of why I never saw children with autism.

    I agree with your Asian children analogy, I could relate to African-americans here in the US. I don’t think that is an analogy I would use to explain the abundance of autism we now see.

    Kev, the numbers seem huge to me.

    If the medical profession was missing these kids for so long, really it doesn’t bode well for their so called expertise.

    When I was at one of my son’s numerous IEP meetings the Superintendent was there, a man with 30 years of administration under his belt and we got into a discussion about the increase in autism. He said back in the 60’s their special ed school was full of kids with Down Syndrome, today you hardly see any kids with DS at this very self-contained school, the school is now loaded with kids with Autism. He asked me what was going on?

  26. Brian Deer December 21, 2006 at 17:23 #

    I’m just a reporter, but I talk a lot to parents who say stuff like: “my kid didn’t speak till he was five, and was given a classical autism diagnosis… but now he’s just a bit geeky and socially inept”. I guess those clowns Olmstead and Kirby are too busy interviewing each other to grasp such things.

    I guess Kirby wouldn’t want to knock the colonoscopy/Secretin/Lupron etc merchants who support his book tours.

    PS: Latest on Wakefield:

    http://briandeer.com/wakefield/eady-gmc.htm

  27. Joseph December 21, 2006 at 17:24 #

    My ideas are much wider than focused on the thimerosal hypothesis. I do think that this hypothesis has demonstrated to be not adequate in terms of CAUSES.

    Sorry María, but you once told me that the rates of autism increased 10-fold in your country after the introduction of the HepB vaccine at birth. (I’m assuming scientific hypotheses you send me by email don’t count as personal/private information). It sounds to me like you believe 90% of all autism in your country is caused by some ingredient of the HepB vaccine.

  28. Joel Smith December 21, 2006 at 17:31 #

    As for Down’s Syndrome, they are aborted before birth now. Very few make it to birth. Eugenics at its worst.

    As for autism, a kid with Autism wouldn’t have been in special education years ago. The schools weren’t funded to do that.

    As for what is a good journal, ask your doctor. Ask a college professor (who’s area of study is relevant to the journal). You’ll get consistent answers. Things like New England Journal of Medicine. That’s reputable. Pediatrics. That’s reputable. Etc. “Medical Hypothesis” is not, and not because there are things that disagree with my views there but rather because no reputable scientist takes it seriously (what is a reputable scientist? You can start with who would likely be able to get tenure at a university – and I don’t agree with everyone that manages that!). If you have a public university near you, you can probably go in there and do research on these journals yourself to see what they actually say about Thimerosal. It’s not particularly difficult.

  29. Joseph December 21, 2006 at 17:34 #

    Which could account to some extent of why I never saw children with autism.

    Maybe you did see autistic kids; you just didn’t know they were autistic, nor did they.

    Have you seen mentally retarded kids? How about mentally retarded kids without physical signs of mental retardation? Do you know that about 2.5% of the population scores below 70 in IQ tests, and this is a stable rate?

  30. margaret December 21, 2006 at 17:42 #

    I have to go now- my son is having a medical procedure today, I hope to be back later.

    Couple of questions:

    How do people here feel about ABA?

    Also, do you if you are an autistic individual, or does your child, if you are a parent of an autistic child have any unusual health issues?

    Joel,

    Did you ever Read “The truth about the Drug Companies” By Marcia Angell. M.D.?

    She’s the former Editor and Chief of the New England Journal of Medicine. Interesting read.

    Thanks All.

  31. anonimouse December 21, 2006 at 18:28 #

    The reason touting the vaccine-autism connection is a big deal is that it negatively impacts public health. Of course, if your desire to be “left alone” and “do what you want with your life”, then the fact you convince a few parents not to vaccinate (and put lots of other kids at risk) means little to you.

    And the real motivation for many of the leading lights in the autism-mercury movement is financial. Lots of real, personal $$$ to be made for the quacks, trial lawyers and plantiffs.

  32. Friend in California December 21, 2006 at 20:15 #

    I hope Margaret comes back and continues to read the comments here. And even moreso, I hope Margaret’s son’s procedure goes well today.
    While I agree that people who espouse different points of view can typically find evidence to support their view, I think that in this case, it misses the larger point: What is one’s motivation in defending a given point of view?
    In the case of the ND view vs. the view of supporters of the mercury/vaccine causation concept, I started out many months ago with an open mind to all sides of the issue. What I have determined (and this is just one man’s opinion) is that the mercury folks tend to spend much of their time lamenting how “miserable” of a situation it is – not just for the affected individual but for the parents themselves. Their tone is very harsh and offensive, the lay blame at the feet of everyone from the federal government to the family doctor, and they strongly express that the only solution to their problem is to eradicate autism from their family. All of the facts they gravitate towards, all of the concepts they husband, all of their interpersonal communication is charged with this pervasive attitude. They viciously defend their “turf”, at the expense of how they treat other people, they constantly cross lines of ethics and decent behavior, and they blatantly ignore the impact their actions and words have on people with autism.
    The ND community can be very bit as solid in defense of their worldview, but it is the worldview itself that dictates how different their approach is to these issues. In my experience, their arguments are made with a much higher level of respectfulness and lower level of angst. They speak interms that are highly conscious of how their words affect those who are at the center of this debate – people with autism. And their core reason for spending time addressing this issue is the harm that can be done to autistics by the incredibly negative portrayals offered by the “mercury” side of the debate.
    If you watch carefully, and view the louder voices among the two “camps”, I think it will be very clear to you, as it is to me, that it is the motivation behind the fact-finding missions that really separates these two crowds.
    I consider myself to be a generally nice guy with a positive view on humanity i general, and I can assure you that I feel much more affinity to the ND crowd than to the “other” folks.

  33. Kev December 21, 2006 at 22:45 #

    _”Here’s what’s so confusing and makes it really hard to debate/ discuss an issue like this. You can provide me with statics, studies, evidence to support your point and I can provide you with statics, studies, evidence to support an alternative point. Who would be right?”_

    _”There is so much information out there on autism. Who decides what’s a credible source of information is? What’s a better peer-reviewed journal? How do you decide if a source is credible? If it supports your viewpoint than most people would say it’s a good source.”_

    But the truth is that there are a few things that constitute good science. Peer reviewed papers published by a decent respected journal for example. That’s not to propagate an ‘old boys club’ but to ensure that any submitted paper is examined with rigour by unconnected international experts in the same field. I’m afraid a very low percentage of papers that come from the thiomersal/vaccine side meet even that basic criteria. And after that its possible to poke large holes in most of it.

    Take the Hornig mouse study for example. Published in a good journal but suffers from numerous flaws. Did you know for example that her methodology allowed her to vastly overdose the mice? Did you know the mice bred she selected are known for violent behaviour?

    Or the Burbacher study. Did you know that thiomersal had to be purchased separately and added to the vaccines?

    Things like this are why these studies didn’t meet a scientific burden of proof and weren’t even allowed to be submitted as evidence in the RhoGAM hearing.

    _”Kev, the numbers seem huge to me.”_

    OK and I can see why you would think that but the question is (in my opinion) huge, _compared to what?_

    _”If the medical profession was missing these kids for so long, really it doesn’t bode well for their so called expertise.”_

    I take your point but really that just backs up what I’m saying. Doctors can’t be experts in everything and autism was very under diagnosed (or wrongly diagnosed). Kanner, in his original paper on autism mentions one of his kids being diagnosed with childhood schizophrenia – not an uncommon event I’d think. As we’ve got better at recognising autism, we’ve got better at counting it.

    Diagnostic substitution cannot account for the increase. An increase in availability of diagnosis can’t. A vastly widened criteria can’t. Changes in the desirability of diagnosis (in the 70’s apparently ‘mental retardation’ was a more attractive diagnosis to parents but now ‘autism’ is) cannot. An improvement in epidemiological methodology cannot. Cultural changes in how we view disability and autism cannot.

    But put all these things together? To me, its very persuasive. And when you weight that against the bad, inconclusive science of the Geier’s, Boyd Haley, Martha Herbert et al then there doesn’t seem to be any reason to be persuaded to any other view.

  34. Ms Clark December 21, 2006 at 23:31 #

    Margaret (I think it was Margaret) wrote:
    “Kev, the numbers seem huge to me.

    If the medical profession was missing these kids for so long, really it doesn’t bode well for their so called expertise.”

    Another thing that people frequently don’t realize about the human mind and about beliefs is that you can see certain things depending on what you expect to see. I’ll give another example. For a while I was having an ongoing discussion about albinism with Antonio Hernandez (an autistic man who also has Tourette’s and a kind of albinism). After the discussion started I started to see albino people. I saw maybe 4 all together during that month or so, and had seen none in the 10 years before and have seen one in the 2 years since.

    If you were to graph my ablino person sitings there would have been a massive spike during the time I was discussing albinism with Antonio.

    This is a known psychological phenomenon. If I start talking about *YELLOW cars* and especially if I get *really intense* about ALL THESE YELLOW CARS are all owned by the CIA and the mafia and they all put off mind control rays and run on orange juice instead of gasoline. What will happen is that you will start to notice more yellow cars than you did before, not because you believe me that they are owned by the CIA but because I made a big deal about it and the topic became more firmly embedded in your reality.

    It can happen even if the discussion is more subtle like your friend says, “Oh, my boyfriend has a yellow Toyota.”

    So, with the tremendous media coverage of autism especially where only teachers who think they’ve seen a huge increase in autism in the school are ever interviewed, they never ever go to a town and interview a teacher who says, “I don’t know what they are talking about the kids who come into this school are about the same as they’ve always been, now they have labels like ‘ADD’ when before they had labels like ‘rotten disobedient kid.'”

    The numbers of autistic kids will continue to rise, but part of that is because the numbers are currently too low among minority kids in the US. That shows the problem with public information getting out. The autism hysteria has been slower to inflitrate non-white communities, and there’s less money to tote the odd 18 month old off to doctor after doctor to get a sensible explanation for the fact that the kid spins plates all day.

    The other thing is to track the amount of money coming from the mercury parent organizations in pushing, pushing, relentlessly pushing the idea that there has been an epidemic. A real epidemic doesn’t need a thousand press packets to be sent out to tell people about itself. This is why Newsweek and NBC had to call autism “a hidden epidemic” NO ONE HAD SEEN THE STUPID THING so they to TELL everyone that it had HIT them and they MISSED it! (screaming, sorry)

    Also, what you get is some IDIOT coming on TV and saying, “my child is the most extreme blah blah, and doesn’t talk and hits his head because we stress him out to the max constantly… he’s stares and paces, it’s devastating and horrific and we all wish we were DEAD!!” Then they say, “and we now have 1 in 166 like this.”

    Which is a total lie. Even if you accept that the kids who are “classic Kanner” autistic are all non-verbal and extreme looking (they aren’t) the 1 in 166 in mainly comprised of kids who NEVER EVER anywhere on earth would have been called autistic in the past. They would have received one of several lables including “funny looking kid” or “rotten brat” or “just like his father at that age.” Suddenly their behavior as a whole (some of which is not obviously autistic) is sifted and only the autistic like stuff is discussed and noticed and they are “autism spectrum” or “autistic.”

    The epidemic hype is a whole bunch of stupid hysteria and angst mixed in with a whole bunch of outright cold blooded LIES spread by the mercury litigation driven law firms and their PR campaigns.

    Go look at how easy it was for the Hutus in Rwanda to spread the idea that the Tutsi just needed to be killed. Simple enough. “They are “cockroaches”, they need to die. If you don’t kill them, you’ll die because they are right now plotting to kill you Hutus.” This is how it was done. The administration just slandered the Tutsis until everyone agreed that the Tutsis needed to die en masse.

    The kind of slander going on against autistic people could lead to their being targeted as adults and is leading to them being targeted as embryos and fetuses. Just like the Down kids are gone, soon the autistic kids will be fewer if the mercury parents and the scientists don’t stop screaming about how putrid and poisoned and horrible we all are.

  35. LB December 22, 2006 at 02:17 #

    I’ll give you another example with OCD – which used to be considered very rare by mental health professionals not all that long ago. Prior to the advent of the SSRI’s many psychiatrists probably may not have seen anyone with moderate to severe OCD unless they became so unable to function their families brought them in. Many of course did not do that because of the shame factor back them – even going into the 1980’s let alone before that it was not considered something to discuss openly like many people do today about things like OCD, autism or bi-polar. It was very hush hush because these conditions had often been blamed on parenting. When the “success” of the SSRI’s in alleviating some of the OCD and AWARENESS about that – people with the condition suddenly started appearing. They were always there – they just didn’t know it was a condition with a name and that there was anything that could be done about it. Also things like improvements in conditions like this due to medications caused medical professionals to rethink the parenting aspect and focus more on the biological component. Therefore people felt less shame in coming forward. You also can not underestimate the use of the internet in bringing people together. People could check search engines for the latest information and support groups and all of a sudden realized that there were many more like them.

    So, like Kevin pointed out, the mercury only groups want to know the ONE reason to dispute their rallying cry of where is the “hidden horde”. Really there are many small reasons that when you add them up effect how you can look at the supposed increase in numbers and realize that even if there is some increase – there are a variety of reasons for it and not some sort of strange epidemic.

    I had other labels besides AS – which by the way some autsim advocates complain about mislabeling going on today – which was done because there was no Asperger’s label until fairly recently. So kids behavior was often not considered unless it became very noticeable and even then there was no convenient catagory to label many of them with so some refused to label the kids at all and others tried to use various combinations of psychiatric labels. Now that autism and Aspergers and PDD-NOS have become available labels and there is more knowledge about the conditions among the community and medical professionals should there really be any surprise that there is an increase in awareness. And really I had not heard about AS until my son was diagnosed with autism. Then it was surprising that this had a different name.

  36. notmercury December 22, 2006 at 02:27 #

    Thanks Kev (and Joseph) for this post.
    Very nice comments from ‘Friend in California’ too.

  37. Richard December 22, 2006 at 04:15 #

    My wife was trained as an adult psychiatrist from 1982-1986 at Harvard University Medical School’s Dept. of Psychiatry. Not once did she see a child or an adult with autism. Why?
    Because #1. There were no child psychiatrists in her dept. At the time there were only about 1,000 child psychiatrists in the whole country (U.S.A.), and almost none of them teaching or doing research. #2. Autistic children and adults were both seen by their regular doctors who assumed they were mentally retarded and were able to manage anxiety or sleep problemsl. If the person needed a specialist, they were sent to a neurologist. At Harvard, all the people with autism who needed specialists were seen by neurologists. Many autistic people were institutionalized or were in group homes, or were in schools — some bullied as nerds or geeks, others labeled mentally retarded. Or, as time went on, they just grew and changed and became able to live and sometimes work in communities. The word autism wasn’t used that much (neither was the word depression or Alzheimers — because the diagnostic criteria were so narrow then). What am I saying? Don’t ever let anyone tell you that because they didn’t “see” an autistic person twenty or thirty years ago that autism was not an integral part of human difference and diversity.
    I love this website, by the way.

  38. Kev December 22, 2006 at 10:18 #

    _”I have to go now- my son is having a medical procedure today, I hope to be back later.”_

    I hope everything goes well.

    _”How do people here feel about ABA?”_

    I’m neutral :o) – its obvious that some (older) forms of ABA were legitimised abuse but the newer forms of ABA don’t seem that way at all. Having said that, our daughters unlikely to ever have ABA because we can’t afford it and its not available on the NHS. The diagnosing team we saw with Meg also didn’t seem to keen on it.

    _”Also, do you if you are an autistic individual, or does your child, if you are a parent of an autistic child have any unusual health issues?”_

    Nope. She’s asthmatic but that’s about it.

  39. Ruth December 22, 2006 at 12:05 #

    My family remembers that I didn’t speak as a child, but used high-pitched squeaks, hence my nickname of ‘Squeaky”. I spent most of my time in a small hall closet. I had no friends. I was seen by the family doc because I slept so little that my mom begged for sleeping pills (they made me more hyper). If this were a case today, what label would I be given?

  40. margaret December 22, 2006 at 12:29 #

    I’m back.

    I’d like to thank everyone for sharing their views, it’s given me some things to think about.

    Ms. Clark the yellow car thing made me think of a game I used to play with my husband when we would be driving around town, where we used to live. The hub cap game. We would count how many cars we would see that had a missing hub cap. When you are looking for something, you see it a lot more than if you weren’t!

    Kev, what is NHS?

    You’re right ABA is very expensive. That’s another “area” where we have people making large sums of money. I know quite a few people who took classes on line to become associate board certified behavior analysts. Started out as home therapists and then pursued an “opportunity” online and now they charge ridicuously high hourly rates- taking advantage of all this better diagnosis. Don’t even get me started about what some of these “experts'” fees are to attend a workshop or to have your child seen at their “clinics”. The money they are raking in is phenomenal. And, boy have their fees went up over the last 5 years or so.

    My son’s procedure went fine. Thanks Kev and “friend in california” for your kind words and concern. We’ve come along way in his ability to handle medical interventions.

    A final question, this topic from my experience can really get people “fired up”- it’s medications. Medications to control behaviors. I’m particularly interested in how people feel about medicating children? What’s too young, or is no child too young.

    This is kind of OT- but did anyone see the story in the media a few months ago about a study that showed some babies are depressed? Should “depressed babies” be medicated?

    Sorry, got of somewhat off topic there for a second. I’m mainly thinking about SSRI’s, or anti-psychotics or even seizure medication that is used to contrl behaviors. In October the FDA approved Risperdal (anti-psychotic) as the first drug approved to treat symptoms of autism such as aggression, self-injurious etc..

    I just would like to know how people feel about using meds of that nature, particularly in children?

  41. Ruth December 22, 2006 at 13:13 #

    We used an SSRI for about 18 months for my daughter’s extreme anxiety. It helped her cope and made other therapies more effective. She takes no meds now (except a multivitamin). I think if used carefully meds can be usefull. She used to have panic attacks in open spaces and from certain noises. She still doen’t like certain stimuli, but she has stratgies that help her cope.

  42. Ms Clark December 22, 2006 at 21:46 #

    I took Prozac for a total of about 2 years, on an off. I had no problems with it for a long time, then it seemed to contribute to some small seizures in individual muscles (myoclonic seizures) and I stopped taking it. Then I figured out that the last year or so that I was taking it, it had caused hot flashes. I thought the hot flashes were just normal aging… but they stopped the day I stopped taking prozac (and looking back they had started when I had started taking Prozac again after a break of about a year).

    I don’t hesistate to tell adults on the spectrum that they might consider asking their doctor about trying out low-dose SSRIs in a cautious way, of course, for depression. I don’t have any experience with anxiolytics.

    My knee jerk reaction to giving children (say under 14) any prescription is to say, prove to me why he needs it and get him off of it as soon as possible.

    My ASD kid has never been on any psychtropic drugs outside of pain meds that might have psychotropic effects, and that when xe was in the hospital for a surgery.

    That said, there are ASD kids who actually have co-occuring schizophrenia (that hits them in their teen years) and from what I’ve seen second hand, schizophrenia usually needs to be treated. That’s scary because all the drugs for schizophrenia have bad side effects, from the little I know about them. I wouldn’t put a kid on risperdal or any psychactive drug until I was sure that I’d tried everything else thoroughly, including making sure that the kid isn’t acting out because he’s being molested by Uncle Fred or Aunt Lucy…isn’t being tortured by little Joey next door or his teacher at school, or the bus driver or the aide or the ABA therapist.

    Same for OCD, is the kid being stressed out so much that indulging in the obsessions are a way out of the stress? Maybe not, but it’s something to check.

    I think MOST of what is called ABA comes close enough to mental torture for autistic kids that I’d toss ABA and let the kid heal from that experience for a while before putting the kid on meds.

    One of the most “healing” and calming experiences for an autistic person is to be left alone for a while, not bothered, talked to or otherwise harassed, and to be allowed access to the things they are stimming on or perseverating on.

    Which is not to say that you leave autistic children alone all the time, but it’s not the worst thing, continually harassing the child with unrelenting human voices and human demands is probably the worst thing you can do to an autistic child.

    Getting him or her a pet (dog, cat, bird, iguana…) is probably a good first step before giving him or her a pill.

  43. margaret December 23, 2006 at 14:17 #

    Thank you Ms. Clark, your post makes a lot of sense. I hope more people will respond with their experiences and opinions.

  44. Kev December 23, 2006 at 15:46 #

    Margaret – the NHS is the National Health Service.

  45. Kev December 23, 2006 at 19:19 #

    As regards medications – I agree with Ms Clarke’s view that sometimes its necessary but efficacy should be established and the person should be taken of as soon as possible.

  46. Ab_Normal December 27, 2006 at 23:02 #

    (delurking)

    Brian Deer said: “I’m just a reporter, but I talk a lot to parents who say stuff like: “my kid didn’t speak till he was five, and was given a classical autism diagnosis… but now he’s just a bit geeky and socially inept”.”

    Crikies, that’s me, except I didn’t get a diagnosis (my mom figured I’d talk when I was ready), and now I’m a 40-year-old programmer…

    (/relurking)

  47. anonimouse December 28, 2006 at 16:02 #

    Chalk me up as another one who had an autism diagnosis until I started talking and being able to almost pass for normal.

    As to the 1 in 166 question – when you change the criteria for an autism spectrum diagnosis PLUS increase the availability of services for those on the spectrum, you are bound to see a lot more folks with that label. Even the most crude application of Occam’s Razor would tell you that is the most logical reason why the rate of autism would be “increasing” rather than some tortured link between environment, vaccines, etc.

  48. Joshua February 13, 2007 at 15:43 #

    You said, “But what about the plaintiffs? They have to prove beyond reasonable doubt that thiomersal in vaccines caused autism.”

    I still haven’t found the legislation that offers any defendant in a tort action the enviable burden of proof of “beyond a reasonable doubt.” Please indicate which law that would be, because I always understood the burden of proof to be 50.1% liklihood in civil matters.

    Was there any legislation passed indicating that these defendants are subjected to a level of burden of proof reserved for defendants in criminal matters?

    Could you please clarify the law for me as a fellow legal journalist?

Comments are closed.

%d bloggers like this: