An intriguing development. Checking my referrer logs (in the awesome Awstats) I came across a reference to Yahoo list server about the David Kirby book, ‘Evidence of Harm’. Interested, I followed it back and came across a thread where this post about Generation: Rescue was being discussed. Of course, when I say discussed I mean slagged off and (as you can see from the comments) my abilities as both a parent and a functional human being called into question because I disagreed with GR that autism is mercury poisoning.
I’m not going to link to the list server as I hate Yahoo lists with a passion (they’re incredibly difficult to navigate – why would anyone use a Yahoo maillist when hosting is so cheap and there are loads of free easy to setup forums?) but it shouldn’t be hard to find if you’re minded to look for it. Just go to yahoo Groups and search for Evidence of Harm. You have to join to read by the way.
Anyway, in amongst the vitriol and petty posturing were some valid points that I felt deserved further explanation. I also got a lot of emails asking me to backup and/or justify my position which is fair enough, no-one can make assertions in a vacuum and expect to be taken seriously and I’d rather do it here in one place than carry on using the dreadful, unintuitive Yahoo interface design.
So, to begin, lets start with the reason that I visited the EoH list in the first place. I made a post that stated that GR were wrong to state that autism was mercury poisoning. Lets clarify that a bit further. GR didn’t say some cases of autism were mercury poisoning. They didn’t say that some cases of mercury poisoning had been misdiagnosed as autism, they said – autism was mercury poisoning. Pure and simple, just that.
Now obviously I disagree. But why? And why does it matter so much?
Well I disagree mainly because mercury poisoning isn’t autism, its mercury poisoning. In order for me to disprove GR’s assertion that autism is solely mercury poisoning, all I have to do is prove there’s more than one basis for autism. Thats easy, researchers are certain there is a genetic component to autism:
So, thats pretty clear. Not conclusive whatsoever taken individually but when taken as a whole, the weight of evidence clearly indicates genetics at least plays a part. This is backed up by my own experience – 3 of my close relatives were on the spectrum and I don’t believe in coincedences on that scale.
But lets not forget that GR claim that autism is mercury poisoning. I’ve shown fairly conclusively that mainstream science disagrees with such a black and white interpretation but lets tackle the issue directly – what actually is autism?
…(a) lifelong developmental disability that occurs by itself or in association with other disorders that affect the function of the brain
brain disorder that begins in early childhood and persists throughout adulthood
autism is a complex developmental disability
The term means a developmental disability
(autism)….is (a) disorder which usually appears within the first three years of life
A chronic developmental disorder usually diagnosed between 18 and 30 months of age
Autism is a disorder of brain function that appears early in life, generally before the age of three
Autism is a lifelong developmental disability
A lifelong, nonprogressive neurological disorder
Autism is a form of pervasive developmental disorder with an unknown origin
a developmental disability that can cause problems with communication, social interaction and routine/repetitive behaviors
Autism is a communication and behaviour disorder
Phew, thats enough copying and pasting. All these definitions were found on Google searching for ‘define: autism’. Seems pretty clear to me. Autism is seen by the medical community as a developmental disorder. Not mercury poisoning.
What about the industry heavyweights? In the UK, the main research body is ARC (Autism Research Centre). the President of this organisation being Professor Simon Baron-Cohen:
What do you feel is the reason for the recent dramatic increase of autistic children in the United States? Do thimerosal
(mercury), environmental toxins and genetics play a role in autism?. I know it is not a very popular view, but it is possible that the dramatic increase of children with autism world-wide is due to better diagnosis, better awareness, changing diagnosis, and the growth of services. When I started in this field 20 years ago, there were only about 3 centres in the whole of the UK where one could go to get one’s child diagnosed with autism, from a specialist. Today, there are many clinics in every town that can provide this service. So, we cannot under-estimate the effect of having a lot more well trained clinicians in front-line public health services looking out for children with these possible diagnoses.
To be fair, Professor Baron-Cohen does, as all decent scientists should, say that he maintains an open mind regarding Thimerosal. I completely agree with him. If it was proven in scientifc, peer-reviewed journals that autism was mercury poisoning then I’d be first in the queue. However, as we’ve already seen, autism is not mercury poisoning, its a disorder which is almost certainly at least partly genetic.
So lets give GR the benefit of the doubt. Lets say that what they actually meant when they said that autism was mercury poisoning was that autism is caused by mercury poisoning. I mean, lets not beat around the bush – this is not what they claim but lets be fair and assume they did. Is it true? Does mercury poisoning cause autism?
If it does we need to answer the following questions:
- Why do only a few people (relatively speaking) ‘get’ autism? If mercury poisoning causes autism we should see a much, much greater prevelance than we do. The vast majority of children in the UK have had vaccines.
- If mercury poisoning causes autism why, when Thimerosal was removed from US vaccines in 2000, have autism cases not dropped? (http://www.autism-watch.org/general/thio.shtml)
- Why is there no scientifically valid, peer-reviewed evidence available to support the theory that mercury poisoning causes autism?
Here’s a few extracts from Quackwatch, the science website dedicated to exposing scientific fallacies.
A study published in 2002 of infants who were 6 months of age or younger compared the levels of mercury in the blood, hair, urine, and stool of 40 who received vaccines containing thimerosal and 20 who received vaccines without thimerosal. The study found: Mercury levels in blood and urine were low in all infants studied and in many cases too small to measure. There was no observed dose-dependent relationship between the level of thimerosal received through vaccination and the level of mercury in the body. Mercury levels in blood did not exceed, at any time, the blood levels that correspond to Environmental Protection Agency guidelines for exposure. Mercury levels in the stool of infants receiving vaccines containing thimerosal were relatively high compared to mercury levels in the stool of infants who were not exposed to thimerosal, providing evidence that mercury from thimerosal is eliminated in the stool of infants. The researchers concluded that, “Administration of vaccines containing thiomersal does not seem to raise blood concentrations of mercury above safe values in infants.”
As recently as last month (Feb 2005), the Journal of Child Psychology and Psychiatry published a report by UK and Japanese researchers that disproved the thimerosal-autism connection in a study of 30,000 Japanese kids. The website of the Centers for Disease Control (www.cdc.gov) offers several studies that refute any linkage. The CDC’s own Institute of Medicine’s Immunization Safety Review Committee recently concluded that “neither thimerosal-containing vaccines or MMR [measles-mumps-rubella] vaccine are associated with autism” and that “the hypotheses regarding a link between autism and MMR vaccine and thimerosal-containing vaccines lack supporting evidence and are only theoretical.”
More to the point: If there were a link between thimerosal and autism, you would expect to see a sharp decrease in autism, since thimerosal has been absent from all childhood vaccines (except some flu vaccines) for five years now, On the contrary, the documented autism rate has continued to climb, proving there is no relationship between the two whatsoever.
Those who support the idea that mercury causes autism cite a wide range of researchers who’ve conducted research into the connection and found positive evidence to support the link. Particular favourites amongst believers in the link are Dr. Mark Geier, David Geier (who’s not even a Doctor) and Dr Andrew Wakefield.
Dr Mark Geier is in American parlance a ‘professional witness’, meaning one who will perform as an expert witness for you in court cases for money. Here’s an official court order regarding Mark Geier from November 2003.
He is however a professional witness in areas for which he has no training, expertise, and experience. Petitioners must seriously consider whether they want to proceed with a witness whose opinion on neurological diagnosis is unacceptable to the undersigned. When we reach the end of this case and the question of expert fees arises, there will be serious doubt whether Dr. Geier should be compensated for his time devoted to diagnosing an acute encephalopathy where none exists, and discussing (in his first supplemental affidavit) the MMR reactions of acute encephalopathy and encephalitis when neither is relevant in this case because Christopher, who was alert and in no acute distress on the 15th day after his MMR vaccination (when Dr. Geier opines his acute encephalopathy began on the 14th day, less than 24 hours earlier), could not possibly have had a Table acute encephalopathy or encephalitis. Moreover, three days later, he was also alert and in no acute distress.
And further to that,
The IOM report described two studies by Geier (6) which had reported an association between MMR and autism as â€œcharacterized by serious methodological flaws and their analytic methods were nontransparent making their results uninterpretable, and therefore non-contributory with respect to causality.â€ In other words, the studies by Geier could not establish a causal relation between MMR and autism because of their methodsâ€”such as using statistical measures incorrectly and omitting facts about their research approach. Similar problems were found in six other studies by Geier (7) and one study by Blaxill (8), which reported findings of an association between thimerosal-containing vaccines and autism. In addition, Geierâ€™s expertise in neurological disorders has been questioned.
And returning to the issue of Dr Geier’s ability as a professional witness:
In other vaccine cases, Dr. Geier’s testimony has similarly been accorded no weight: Thompson v. Secretary of HHS, No. 99-0436, 2003 WL 221439672 (Fed. CI. Spec. Mstr. May 23, 2003); Bruesewitz v. Secretary of HHS, No. 95-0266, 2002 WL 31965744 (Fed. Cl. Spec. Mstr. Dec. 20, 2002); Raj v. Secretary of HHS, No. 96-0294V, 2001 WL 963984, *12 (Fed. CI. Spec. Mstr. July 31, 2001); Haim v. Secretary of HHS, No. 90-1031V, 1993 WL 346392 (Fed. Cl. Spec. Mstr. Aug. 27, 1993) (“Dr Geier’s testimony is not reliable, or grounded in scientific methodology and procedure. His testimony is merely subjective belief and unsupported speculation.”); Marascalco v. Secretary of HHS, No. 90-1571V, 1993 WL 277095 (Fed. Cl. Spec. Mstr. July 9, 1993) (where the special master described Dr. Geier’s testimony as intellectually dishonest); Einspahr v. Secretary of HHS, No. 90-923V, 1992 WL 336396 (CI. Ct. Spec. Mstr. Oct. 28, 1992), aff’d, 17 F.3d 1444 (Fed. Cir. 1994); Aldridge v. Secretary of HHS, No. 90-2475V, 1992 WL 153770 (CI. Ct. Spec. Mstr. June 11, 1992); Ormechea v. Secretary of HHS, No. 90-1683V, 1992 WL 151816 (Cl. Ct. Spec. Mstr. June 10, 1992) (“Because Dr. Geier has made a profession of testifying in matters to which his professional background (obstetrics, genetics) is unrelated, his testimony is of limited value to the court.”); Daly v. Secretary of HHS, No. 90-590V, 1991 WL 15473 (Cl. Ct. Spec. Mstr. July 26, 1991) (“The court is inclined not to allow Dr. Geier to testify before it on issues of Table injuries. Dr. Geier clearly lacks the expertise to evaluate the symptomatology of the Table injuries and render an opinion thereon.”).
All above quotes taken from Quackfiles blog
And how about Andrew Wakefield? A name more familiar to a UK audience definitely.
Sir Liam Donaldson, England’s chief medical officer, accused Dr Andrew Wakefield of peddling “poor science”. He said the 1998 study was flawed and has been criticised by “independent experts around the world”. His comments came as the General Medical Council prepared to open an investigation into the way Dr Wakefield carried out his study.
So these are part of the scientific resources the ‘mercury causes autism’ followers have to rely on to provide their science. Not a great validation in my opinion. Not only have we seen how mercury poisoning is not solely responsible for autism, or probably even responsible at all, we’ve also seen that in all valid scientific tests done so far, mercury/thimerosal has been substantially unproven to be linked to autism as a causative. We’ve also seen how their leading researchers are held in very low esteem by their countries legaslative and medical bodies.
So what reason then do people have for promoting a link between mercury/thimerosal and autism? Who gets what out of it?
…(I)n a recent web search on “thimerosal autism”, five of the first ten results link to alarmist informational sites bankrolled by law firms. Not to knock my fellow professionals, but this data point makes it easier to understand why there is still so much press on the alleged thimerosal-autism connection. The agenda of many of these sites is quite clear: to link vaccines to autism and to stimulate lawsuits by aggrieved parents. As for the media’s ongoing interest in autism, sensationalism seems to be the primary motive.
I’m not saying Generation Rescue are in it for the money but when the evidence that supports their theory that autism is mercury poisoning is so scanty and the evidence that goes against them so strong then a large element of doubt about their authenticity is only to be expected.
And why does all this matter so much to me?
Lots of reasons. Firstly, the treatment that groups like Generation Rescue sell is at best, experimental. Its called ‘Chelation Therapy’, stripping out the mercury (and/or other heavy metals) from the body. Here’s some opinions on it:
The use of chelation therapy to treat autistic children is completely bogus. Three successful lawsuits have been filed by parents who believe they were victimized in this way.
Details of the lawsuits and the subsequent shutting down of the clinic responsible for administering these treatments can be found on Quckwatch.org. Its disturbing reading. Also pretty disturbing are the fraud claims against Chelation therapists as well as the suits filed against Chelation therapists in Australia.
You may also find a visit to Quackwatch’s Chelation page interesting. It has links to two cases of fraud and five cases of Disciplinary action against Chelation therapists as well as details of why American Insurance companies won’t cover the administration of Chelation therapy.
Please note: I’m not claiming Chelation therpay has no medical benefit (although it looks pretty doubtful). I’m claiming that it has no medical benefit when used to treat autism. It also has no medical benefit for a range of other medical issues. Taken from the American Heart Association:
Whatâ€™s chelation therapy? Chelation therapy has been proposed to treat existing atherosclerosis and to prevent it from forming. After carefully reviewing all the available scientific literature on this subject, the American Heart Association has concluded that the benefits claimed for this form of therapy arenâ€™t scientifically proven. Thatâ€™s why we donâ€™t recommend this type of treatment.
So, in essence, Chelation therapy as a treatment for autism is useless. As a treatment for lots of other conditions its also useless. It does however have one legitimate use:
…(C)helation has legitimate use for treating heavy metal poisoning.
So what does that tell us? Well, to me it quite clearly says that any ‘autistic’ being successfuly treated with Chelation therapy wasn’t autistic – they were metal poisoned.
It matters to me that people are being fooled in their honest attempts to help their autistic children into being treated with this stuff. The more attention rubbish like this gets, the less attention valid interventions such as PECS gets and another generation of autistic kids get treated as experimental guinea pigs by well meaning parents doing their best with the information most readily to hand.
So I generally believe Generation Rescue are evil right? No. I believe they possibly do great work in detoxing kids suffering from metal poisoning and its further true to say that some autistic kids may well have metal poisoning – its not the sole province of non-autisitcs after all – but they should seriously rethink their stance on ‘autism is mercury poisoning’. Its a simplistic error and one thats shamefully calculated to play on the best intentions of parents of autistic kids. It could also have serious health implications on the children being treated. Where are the long term health studies into Chelation therapy? I’ve not seen one. Tht doesn’t mean they don’t exist of course but before I subject my child to any course of medication I want to give that method a serious investigation. It does strike me as ironic that the same parents who rush to condem a vaccine that is proven not to cause autism are happy to submit their kids to a very under-researched area of medicine.
Its also depressingly ironic that we’re now beginning to reap the consequences of our folly as a recent outbreak of Rubella in Canada shows. Rubella, of course, can cause autism.
I believe as a parent that my overriding responsibility is to the health of my children. Thats why we only use interventions that definitely help and don’t use those that are not based on valid science. I further believe that my responsibility to my kids is to raise them to be happy and confident of who they are. We don’t seek a cure as we love Megan for who she is. She’s smart, bright, confident, funny, annoying, noisy, stand-offish, loving, stimming, involved, curious and autistic. There’s nothing I’d want to change about any of that and the things that are a problem like her toileting, her lack of effective communication and sleeplesness are intervened in with varying degrees of success. But we know that our interventions are scientifically valid. They require a hell of a lot fo work and there’s no quick fix but who could possibly not want to spend more time with their kids?
NB: I’m sure people will have a lot to say and thats fine. If you keep it polite and well mannered your comments will stay. I won’t tolerate abusive tone or language and I’d appreciate it if you used the ‘textile’ tool (see link next to comment box) to properly create links if you cite them. Anyone who does lapse into abuse will be reported to their ISP and their IP address will be banned from here. I have 2 (soon to be 3) kids to parent, I don’t have time to parent you too.