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A Means To An End

28 Nov

And so, the latest fire-storm in the autism blogosphere continues to rage. If you’re unaware of the story I’ll offer a brief recap (as unbiased as I can make it) before trying to offer up some commentary.

Briefly, JB Handley of Generation Rescue bought the domains supportvaccination.com, oracknows.com and autismdiva.com. Why? I don’t really know. On a practical level they can’t be doing him much good at all so one is left to consider the possibility that he did it as either a joke or to be spiteful. I sincerely hope that the team who is working on his search engine marketing hasn’t recommended that he does stuff like this as if they are then they’re moving him into the realms of what is termed as ‘black hat SEO’ – this refers to doing lots of bad stuff that is against acceptable internet policy to get a good rank on a search engine results page. The penalties for this can be severe if search engines catch you at it and include blacklisting the sites in question and terminating any associated AdWords accounts. From what I know of JB he loves to push the envelope a bit so I wouldn’t be surprised if he is doing this. He is playing with more fire than I think he knows about though.

Anyway, the unsurprising upshot of this is that most people on ‘his’ side of the debate think that a) his methods are questionable but seeing as he’s promoting such an important message the ends justify the means or b) that its downright hilarious. People on ‘my’ side of the debate (please note by using the phrase ‘my side’ I’m not assuming ownership of it) think that a) its all very childish and a bit sad or b) that what he’s doing is tantamount to willfully misleading people.

What are the definite results of JB’s actions? Well, he’s polarised two sides that were beginning to listen to each other a little better. He’s created a new battlefront where none existed before and he’s upset people.

Lets look at JB’s sides claims that even though his methods are questionable that its OK as the message he’s relating is so important the end justifies the means.

First, that is a very dangerous argument to apply to anything. If we call ourselves a society that has a moral base then ‘the ends justify the means’ is at best, ambiguous as a reason.

Secondly, lets look closely at what JB’s message actually is to see if it is indeed justifiable to use methods such as these. Lots of people, particularly JB’s supporters either don’t know or seem intent on ignoring JB’s message. It is this: autism is mercury poisoning. Not _may be_ , not _in some cases_ , not _might be triggered by_ but simply *is*. Now and forever. This is an absolutist position and its the main thing about Generation Rescue that I believe it is imperative to challenge. Why? Because autism is *not* only mercury poisoning. The vast majority of the information on the GR site revolves around the idea that thiomersal in vaccines causes autism. Lets leave the debate as to the scientific validity of that belief to one side for now. I’m quite happy to entertain the possibility that he may well be right. I’m equally happy with the science that as of this time, states that he is not. For my argument – its irrelevant. The fact is that even if JB is right and thiomersal does cause autism _it is not the *sole* cause of autism_.

Big deal say people – why does that matter? It matters because if that viewpoint comes to be accepted fact then the standard treatment for autism will become chelation. And seeing as it is a verifiable scientific fact that autism existed _long_ before thiomersal was ever used this would mean that there were a very large number of autistic children undergoing chelation totally unnecessarily. Question: Is it stupid or clever to subject children to unnecessary medical procedures?

The irony of this message is that it is a standard complaint of the mercury = autism belief system that they couldn’t get their Doctors to look beyond their narrow treatment options. This is _exactly_ what will happen should mainstream medicine ever accept the GR viewpoint that autism is mercury poisoning to the exclusion of everything else.

Let me reiterate once more – I have no issue with any group that calls for more investigation into the use of thiomersal in vaccines and that I’m glad that it is no longer in vaccines. I also fully accept that there are occasions that vaccines have damaged children. I also fully accept that mercury is a known neuro-toxin. What I do not want however, is for my daughters treatment to be a) enforced and b) an unnecessary and dangerous procedure when there is no basis for such absolutism.

So I ask you again Dear Reader – is JB’s absolutist message so good that it justifies his actions? Lets not forget that his actions also include name-calling (JB referred to friends of mine as ‘trailer dwelling coo-coo’s’ and me personally as a ‘wanker’ – a phrase for the non Brit-slang understanding amongst you that means that JB believes I masturbate to excess – roughly equitable to ‘jerkoff’ in US parlance I believe). This is as well as buying up domains that belong to sites that disagree with him.

Many claim that JB has apologised (although I fail to see where he apologised to me) and thus should be forgiven. I agree and disagree with that. I agree that for the debate to progress we all need to forgive and move on. However, this is not a one-off circumstance for JB. This is his MO. At some point, we have to stop making allowances and start holding people to account.

That said, up until this incident, I believed JB’s latest apology was sincere. I still hope it was.

People have also referred to JB’s behaviour as a bull-in-a-china-shop and expressed admiration for his go-get-em approach. I can’t see how such an approach is particularly admirable. Bulls loose in china shops breaking everything indiscriminately and certainly I feel less sure of the shaky common ground that had just started to be secured between the two sides. Lets also not forget _my_ message: that autism is not solely thiomersal poisoning and that bulls loose in _that_ particular china shop run the risk of doing very great damage to the delicate objects inside it.

Now lets move on to the point about upset. People from JB’s side of the debate cannot seem to understand why this action has upset Camille so much. As she is very much smarter than me she doesn’t need me to speak for her but I do wish to add my opinion as to why whats happened might cause her distress.

As a blogger who comments particularly on the science behind the debate she stands or falls on the accuracy of that science. If anyone was misled into thinking she endorsed the GR view then that person may well have further doubts about her validity. I hesitate to speculate as to whether or not that might be one of the reasons JB did it of course.

Secondly, there is an issue here of implicit control. An ugly image is called to my mind of a rich businessman laughing uncontrollably at the image of a less affluent woman as he dangles her on puppet strings. Fanciful? Yes. Exaggerated? No doubt. Based in some element of truth? I’m afraid I think it is.

Thirdly, again, lets look at the GR message and think about why those who are autistic particularly might not want to be associated with it. They believe GR is wrong. Further though, they see GR reducing who they are to a set of mercury related symptoms. Lets not forget that GR believe that autism is *only* mercury poisoning.

Once upon a time (in fact less than 40 years ago) psychologists ‘knew’ that homosexuality was *only* an illness that could be ‘cured’. How do you think that – at the time – that made gay people feel? Imagine a blogging community of parents desperate cure their gay adolescents (who ‘know’ that their children are just ill) – would gay adults be horribly offended and fight back? Or would they sit on their hands and do nothing?

For us parents, the outcome of this debate is very important – our kids depend upon it. For those people who are autistic, the outcome of this debate is absolutely crucial. Their continued survival depends upon it. I ask you once more: in an area of such vital importance, is the method really unimportant when the method denigrates so much? Is it something to be brushed aside as we smile indulgently at its instigator when its tantamount to an attempt to control a debate that affects peoples very right to exist?

Is this message so right that such a total lack of respect for a differing view is at best readily embraced and at worst tolerated in the way we would tolerate a favourite but slightly spoiled child?

Autism, Respect and the Mercury Militia

25 Oct

What was a disagreement about the causes of autism is widening into a war. This isn’t a war between parents and scientists. Its a war between one set of parents and a group comprised of other parents, scientists and autistics themselves. Its a war between flexibility and acceptance on one side and a rigid determination to ‘cure’ on the other.

To cure what? Good question. Some believe that autism and its attendant comorbidities are interchangeable. That constipation and a different way of looking at things are the same thing. That dyspraxia and a lack of imaginative ability are the same thing. Others believe that the two things are quite separate. That the comorbidities that are attendant with autism in _some_ people cannot be used to define autism. That the condition of being autistic bequeaths gifts as well as troubles (and it does bequeath troubles, lets not pretend it doesn’t) and that keeping the troubles is a small price to pay for keeping the gifts.

There are lots of questions that arise from these ideas of course but lets further examine the stance of the opposition to these two camps. For those that see autism as a medical as well as developmental issue there seems to be a residual pool of dislike, verging into outright hatred for those that don’t. They think that their opposition are abandoning kids to their horrible autistic fate. For them there are no shades of grey – its either black or white. These people also seek to play down and even attempt to rewrite official diagnostic criteria to downplay the ‘higher’ end of the spectrum.

Mr Lietch (sic) thinks it is in the child’s best interest to do absolutely nothing to ameliorate this condition [the writers son] . And, he and his associates knock parents for trying to help our children

John Best Jr

This condition. Autism, one assumes. The question to which I repeatedly put to John Best was what constituted autism? Best constantly (and still does) fails to appreciate the distinction:

…You claim head banging and feces smearing are not autism. Is this supposed to obscure the issue? These are not normal and are very much a part of autism….

John Best Jr

Up until now all we have is debate – its a debate that takes no prisoners to be sure, but its a debate nonetheless. However, things invariably take a turn for the worse:

Your neurodiverse pals who sneeringly refer to people who try to help children as “curebies”

Sounds diabolical doesn’t it? Us sneeringly cruel ‘neurodiverse’ (sic) want to stop people helping children. Something of bizarre belief seeing as quite a lot of people who consider themselves aligned with the notion of respecting autism are parents themselves. But wait! We forget that…

Anyone who is not chelating to get rid of the mercury is guilty of child abuse. Every doctor who is not telling their patients to chelate is guilty of malpractice….. Any parent who listens to the doctors tell them that there is no known cause or cure for autism is too damn stupid to have kids.

John Best Jr

Except of course the truth is somewhat different. The truth is (as I have repeatedly said) that respecting autism is not the same thing as respecting someone gastric issues. If your child smears faeces then find out why and intervene. If your child bangs their head on the wall, buy them a scrum cap, figure out why and intervene. If your child has gastric issues, find out what they are and intervene. *If your child is mercury poisoned then get a proper doctor to chelate them*. But don’t fool yourself that by removing someones need to bang their head against a wall you are removing their autism as you are not and cannot. that doesn’t mean you shouldn’t do it. It does mean you need to have realistic expectations. It does mean you need to be prepared to look at your child at the beginning, during and end of the process of treatment you have for them and say ‘I would love you no matter what’. You need to understand that because someone can’t speak doesn’t mean they can’t hear and to hear who they are described as ‘rotting in an abyss’ or ‘worse than hell’ or ‘diseased’ is going to do that child no good at all.

Frequently those if us who believe in acceptance are told by those that don’t that we are ignoring childrens needs:

And, Kev, have you done research on the trailer-dwelling coo-coos you now are affiliated with? You keep harping on the symptom profile of autism. Look, mate, our kids ALL share the same physical symptoms. I had twin autistic boys over to my house this weekend. They are six. They’ve never been treated. They can’t talk, much less function, they require 24 hour care. They have all the same physical issues my son HAD, which have since resolved. In your coo-coo world these parents would do nothing. Shameful and idiotic.

JB Handley

I have to admit to not being too sure what ‘coo-coo’ means but I’m assuming its not good. As ever though, the point is missed – no-one, repeat *no-one* is saying parents shouldn’t intervene where kids can’t talk or can’t function and I challenge JB Handley (or anyone else) to find any statement where I have advocated that belief. Its increasingly hysterical fear-mongering because its rapidly dawning on these people that they are looking increasingly fundamentalist and fringe.

You might note I’ve quoted extensively from JB Handley and John Best Jr here. I do so because they are both strongly affiliated with Generation Rescue, the group that apparently gives parents the knowledge to make an informed choice. Yeah. Knowledge like:

There is no evidence to suggest that autism is genetic. No autism gene has ever been found and the search will be endless – how can you have a gene for a mythical condition? Autism is mercury poisoning

Generation Rescue.

So, John Best Jr and JB Handley are all about promoting choice and informed decisions. So much so that they launch into full on attack mode and misrepresent people’s beliefs. Sometimes the attacks get very, very personal indeed:

Muslim terrorists who fly planes into tall buildings have a different set of beliefs than others. Your neurodiverse pals who sneeringly refer to people who try to help children as “curebies” and go to extreme measures in attempts to discredit those people are in the same class.

John Best Jr

John Best associating the World Trade Center attack with my belief that acceptance and flexibility is best. I couldn’t quite believe he’d actually said that so I asked for clarification:

You spout your nonsense in much the same way that terrorists shout for Allah before they blow things up with bombs strapped to themselves. That agenda is more than a little bit wacky to most people who are thinking straight.

John Best Jr

Yup, he meant it all right. Don’t forget, John Best Jr is a ‘Rescue Angel’ – one who is charged by Generation Rescue with informing parents about mercury and chelation. He is a spokesman for Generation Rescue.

The populace of Generation Rescue have a particular dislike of Kathleen Seidel. They see her as the ‘spokesperson’ of ‘the neurodiverse’ probably because of the domain. In a very disturbing attack, Best again mistakes autism with comorbidity, goes after Kathleen and at the same time confirms that for him, ‘better dead than autistic’ is certainly true:

..So they miss out on curing their children and the kids wind up spending their lives in institutions. In effect, they never enjoy one second of the lives they could have had if only the mercury had been removed from their brains. Ms Seidel might as well have put a bullet in those kids so they would not have suffered. Does that sound about right, Kevin?

John Best Jr

One wonders – is ‘better dead than autistic’ a policy decision of Generation Rescue?

John Best, that (typical?) fine, upstanding member of Generation Rescue also has views on the failings of the diagnostic criteria for autism:

Your adult Asperger’s friends would have been called by a different name when I was young and nobody was aware of the effects of the mercury they’ve been shooting into us since the 1930’s. They would have been called nerds.

John Best Jr.

Nice.

Best is, of course, attempting to paint all within the ‘neurodiverse’ (sic) movement as AS. Of course, his theory founders on the fact that it is not. But still, I wonder – is insulting autistics another policy of Generation Rescue?

I don’t believe for a moment that everyone in the Biomed community thinks like Best, or Handley come to that, which makes it a pity that so very many in the Biomed community see that our thoughts as a threat to them – so much of a threat that even an appalling loss of life such as the World Trade Center attacks is not above being denigrated in an attempt to demonise people such as I.

I’ve said it before and I say it again now. The Biomed community needs to take a long hard look at itself and who its most vocal proponents are. Do you honestly believe that your cause is well served by referring to others as akin to bombers? Or child abusers? or nerds?

Is this something you really think will attract people to your way of thinking?

Is this a position from which you think is substantial enough to build from?

Are these words which you feel serve you well, personally?

Autism: A Novel Form Of Mercury Poisoning

14 Oct

Many in the Neurodiversity and Biomed communities are aware of this paper. It forms one of the lynchpins of the Biomed communities belief system – that autism and mercury poisoning are the same.

I’ve long been confused by this belief. Its plainly wrong and I’m amazed so many seemingly intelligent people believe it. I’ve posted about it numerous times both on here and in the comments of others blogs and the answers from its proponents when I question it veer from outright hostility to laughter at my supposed naivety in not being able to see ‘it’.

Its quite obvious to me that the symptoms of mercury poisoning tally very loosely with some comorbidities of autism but that as these things _are_ comorbidities, they cannot be used to diagnose autism and that therefore the two things cannot possibly by the same thing.

Just for your own information, here are the clinical symptoms of mercury poisoning and here is the diagnostic criteria for autism. But don’t just read the links I provide, go find some of your own.

After you’ve read around a bit you’ll probably conclude as I did: The idea that the two tally is ridiculous. However, Kathleen made me aware of a commentary piece in Pediatrics that backs up my position. I didn’t even know it existed until now so ‘thanks’ to Kathleen for posting its details.

Here’s a few quotes from the commentary – the full piece is available from the link I provided.

In mercury poisoning, the characteristic motor findings are ataxia and dysarthria. These signs, along with tremor, muscle pains, and weakness, are noted on relatively high-dose exposure, acute or chronic. In 3 Romanian children accidentally exposed to ethyl mercury in a fungicide, these same symptoms were prominent. The outcome of fetal methyl mercury poisoning in severe form also included spasticity. In contrast, in autism, the only common motor manifestations are repetitive behaviors (stereotypies) such as flapping, circling, or rocking. Persons with Asperger syndrome may be clumsy, and hypotonia has been noted in some infants with autism; the frequency of clumsiness and hypotonia in autism spectrum disorders is not established. *No other motor findings are common in autism*, and indeed *the presence of ataxia or dysarthria in a child whose behavior has autistic features should lead to careful medical evaluation for an alternative or additional diagnosis*.

Other signs that may appear in children with chronic mercury toxicity, such as hypertension skin eruption and thrombocytopenia are seldom seen in autism.

When severe mercury poisoning occurs in prenatal life or early infancy, head size tends to be small and microcephaly is common. Prenatal exposure to other neurotoxins—lead, alcohol, and polychlorinated biphenyls, for example—also predispose to decreased head size. In contrast, in autism increasing evidence indicates that head size and, as measured by volumetric magnetic resonance imaging, brain size tends to be larger than population norms.

At sufficient dose mercury is indeed a neurotoxin, but *the typical clinical signs of mercurism are not similar to the typical clinical signs of autism*.

Mercury poisoning and autism both affect the central nervous system but the specific sites of involvement in brain and the brain cell types affected are different in the two disorders as evidenced clinically and by neuropathology.

Nonspecific symptoms such as anxiety, depression, and irrational fears may occur both in mercury poisoning and in children with autism, but overall the clinical picture of mercurism—from any known form, dose, duration, or age of exposure—does not mimic that of autism.

Where Are All The Adult Autistics?

5 Oct

Anyone remember David Kirby?

Citizen Cain who had a dialogue going with Kirby for awhile probably does. Unfortunately, since CC showed Kirby how wrong he was Kirby’s gone very very quiet on that front.

One of the big – if not the biggest – dependencies that the whole autism = thiomersal poisoning rests on is the existence of the so-called ‘autism epidemic’. Without the ‘epidemic’ there is no rise in prevalence and without a rise in prevalence there is no mystery surrounding the causes of autism. In fact, if there’s no epidemic then this refutes the idea that thiomersal causes autism as the amount of thiomersal (before its removal) in vaccines rose sharply. Without a corresponding ‘epidemic’ the whole shebang is dead in the water.

One of the key points then become the existence of adults on the spectrum. If they exist in large numbers then there can be no real rise in prevalence and hence no epidemic. As David Kirby himself said:

When it comes to autism, here is one of the key questions we should be asking: if autism…..has always been prevalent at the same constant rate, then where are the 1-in-166 autistic 25-year-olds (those born in 1980)? Where are the 1-in-166 autistic 55-year-olds? Why can’t we find them?

David Kirby

Firstly, lets note that the 1 in 166 figure is in hot dispute and based on the California DDS numbers which California themselves say are not reliable for tracking autism prevalence (see Citizen Cain link above).

The big problem with answering Kirby’s question is that these people are not tracked and recorded accurately – or at all in some places. However, thats not the point. Kirby is saying they don’t exist in high enough numbers. Whilst its impossible to prove or disprove that exact point its easy to demonstrate that there are a _lot_ of adult autistics.

A 2004 audit on ASD in Scotland tried to present on overall report on the ‘state of ASD knowledge’ in Scotland. Most striking to me as I read the report was the comments that each local authority/NHS partnership had regarding an answer to the following question:

Research tells us that prevalence rates of autistic spectrum disorder represent an underestimate. To what extent do you consider the numbers above to be an accurate reflection of all those who live in your area?

Argyll & Bute Council
It is believed that the figures represent a significant under-representation of those with ASD in Argyll and Bute. This was thought to be due to a historical under-diagnosis and the absence of clearly defined referral pathways and multi-agency assessment processes for adults.

East Renfrewshire Council, NHS A&C and Greater Glasgow NHS
…as a result of changing patterns of diagnosis over recent years there are likely to be substantial numbers of adults with ASD who are not known to services and are not diagnosed as having ASDs.

AYRSHIRE AND ARRAN
It is apparent that information collection and collation for adults is almost non existent.

DUMFRIES AND GALLOWAY
There is little doubt that this number is far short of the actual number of adults in Dumfries & Galloway with ASD.

GRAMPIAN
There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability.

HIGHLAND
It is believed that these figures comprise a significant underestimate due to the lack of a diagnostic process particularly for adults. It is believed that the figures for younger children are accurate due to the development of diagnostic tools for children are accurate due to the development of diagnostic tools for children and the establishment of multi-disciplinary partnerships which include education.

LANARKSHIRE
The estimated numbers provided for the pre-school and primary school ages are thought to be a reasonably accurate reflection of the true picture. However the estimated number of secondary school children is less accurate and the estimated number of adults with ASD is likely to be a considerable underestimate of the true prevalence.

ORKNEY
Figures for children are an accurate representation of needs. One or two children may yet be diagnosed. Figures for adults are under estimated as diagnosis has not been made and access to specialists is variable.

Perth & Kinross Council
Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

Pretty interesting stuff I think you’ll agree. This means that about 45% of the areas questioned said that the prevalence for adults was grossly underestimated, badly reported and that a lot of these adults exist without diagnosis.

A secondary question also of note asked:

What changes are there in demand in the last 5 years? Are there increased numbers? If so, what do you attribute this to?

Just about every area reported an increase and all areas attributed to either, reclassification of some people (especially adults) from Learning Difficulties to ASD, increased awareness of ASD generally and in medical circles and improved diagnosis. Perhaps the most amusing answer came from whomever compiled the reports for Shetland who said:

Demand for diagnosis, therapy, respite and alternative treatments. Any increase in numbers is attributed to jungle/grape vine, internet, parent support group and media.

Maybe David Kirby should pack the second revised draft of Evidence of Harm into his Sporran and come and find some decent research. That would make a nice change for him.

The Answer To Autism?

4 Oct

Yesterday, the Herald published a story about how they may have ‘the answer to autism’.

It turned out that it was a story about an upcoming conference in October run by the charmingly named Action Against Autism. My US readers may be very familiar with the speaker list.

The Herald article came out with some choice quotes such as:

…in fact, that American ASD specialists have described it as an “epidemic”. That term may have the ring of hyperbole about it but the facts do appear to substantiate it.

and

According to McCandless, one of autism’s primary triggers is a direct injury to the gastrointestinal system through over-vaccination and use of antibiotics

So I decided to write them an email detailing the _actual_ facts as oppose to the _respun_ facts:

Sir,

I would like to respond to your very unbalanced and misrepresentative article regarding autism, its status as an ‘epidemic’ and the likely causes and treatments of autism.

In your article you state that:

In other countries, most notably the US, the situation is even worse, so much worse, in fact, that American ASD specialists have described it as an “epidemic”. That term may have the ring of hyperbole about it
but the facts do appear to substantiate it.

You are actually in error. The facts (by which I mean scientific, peer reviewed evidence) indicate there is *no* epidemic of autism. There is an increase in numbers but that does not indicate an increase in prevalence. A recent article in New Scientist provided a good overview of the situation including the results of the latest research into the subject but I wish to quote from it below:

One team, however, is ahead of the game. Back in July 1998, Fombonne and Suniti Chakrabarti of the Child Development Centre in Stafford, UK, started screening every child born in a four-year window (1992 to 1995) who lived in a defined area of Staffordshire, 15,500 children in total. As a result, they established baseline figures for autistic spectrum disorders – about 62 per 10,000. Then they did it again, in exactly the same place and exactly the same way, this time with all the children born between 1996 and 1998. In June this year, they reported that the prevalence of autism was unchanged (American Journal of Psychiatry, vol 162, page 1133). “This study suggests that epidemic concerns are unfounded,” concludes Fombonne.

The use of the term ‘epidemic’ to describe autism is an insulting and derogatory term to apply to a whole subsection of people. It has connotations way beyond its literal meaning and can only add to the misinformation and hysteria which already surrounds autism.

Some other speakers at the AAA conference include Boyd Haley, who once infamously referred to autistic children as suffering from ‘mad child disease’. On the back of the subsequent uproar, Haley claimed he had invented an acronym based on his belief that autism is in fact mercury poisoning. He said he was referring to *M*ercury *A*quired *D*isease when saying ‘mad’. Obviously a poor linguist, he failed to spot that when lengthened out, his phrase would read ‘mercury acquired disease child disease’.

The hidden agenda of AAA (and the vast majority of the invited speakers) is that autism is in fact mercury poisoning, received in the form of thiomersal in vaccines. They say that the thiomersal (used as a preservative in vaccines a few years ago) has somehow caused autism. They say this has given rise to an epidemic of autism. The science in no way whatsoever supports their position and in fact refutes it. No science has been done that indicates a causative link between thiomersal and autism and these ‘scientists’ inhabit the same murky world of quackery as Andrew Wakefield of recent MMR scandal infamy.

The reason I say this is that not only do these ‘scientists’ believe (in the total absence of proof) that autism is mercury poisoning, they also believe that a very controversial type of treatment – chelation (pronounced ‘key-lay-shun’) can ‘cure’ or ‘reverse’ autism. Again, they have no evidence for this belief – no science has been done on its efficacy. In fact, one ‘renowned’ chelationist Dr Rashid Buttar peddles a trans dermal form of chelation that come in the form of a skin cream. This cream has also never been tested for safety or efficacy. It is in fact highly unlikely to ever pass through the skin. Dr Buttar charge $800 for a consultation. He also believes he can cure cancer and reverse old age.

Recently, another form of chelation called EDTA-IV chelation killed a 5 year old autistic boy in the US . This procedure was carried out despite there being no link between autism and thiomersal, no real similarity between the symptoms of autism and the symptoms of mercury poisoning and no research conducted on either the safety of, not the efficacy of, chelation as a treatment for autism. One of the speakers at the AAA conference, Anju Usman, was the close colleague of Roy Kerry, the Doctor who administered th dose of EDTA to the five year old boy above.

On the other hand, research into valid, respectful and non-dangerous interventions has dwindled in this country. The figure for monies related to autism dedicated to this research is 8%. From that article:

UK research into the causes and treatment of autism is seriously behind that of other countries, a report says. It says the row over a possible link with the MMR jab has over-shadowed the fact that little is known about the behavioural disorder.

What I fear is two-fold. By pandering to this continuing association with vaccines, autism research risks getting sucked into a biomedical dead end. Its tempting to follow that path (and as Dad to an autistic child I did indeed follow that path for awhile) but it offers no answers and as evidenced above, that path can lead to some very nasty places. People lie in wait like predators, ready to take advantage of your ignorance and charge you to the hilt for the pleasure. I urge all parents to question the motives of anyone linked to the non-scientific treatment of autism. There is often a heavy financial price to pay and sometimes a heart breaking non-financial one.

My other fear is that by allowing people like this to discard our autistic children as the results of an ‘epidemic’ or a ‘living hell’
or to describe our kids as ‘lost’ (my daughter is right where I left her!) we create even more negativity about a condition that already carries a heavy load of stigmatising misinformation. What I would hope for my daughter is that she remains free from people attempting to ‘cure’ her and that we as a society can progress to a point where people like my daughter can be free to be who they are, receive treatment for the debilitating accompanying conditions that sometimes come with autism and that autism can be seen as a difference more than a disability.

Thanks for your time.

###ends###

They mailed me back thanking me for my email and asking for my postal address so they could consider it for publication so I’m hopeful someone somewhere will read it and think twice.

Chelation Therapists Are Spammers

7 Sep

Its no secret in the SEO (search engine optimisation)community that blogs are structured to do very well in search engines. The centrality of the subject together with the bonding of ever-growing communities means most search engine algorithms spider blogs perfectly.

Consequently, anyone wishing to do well in Search Engine rankings could do worse than get themselves a blog. And so, we finally come to blog spam – the setting up of a blog that is maintained solely to push people towards commercial products.

Its no surprise that a murky subject like Chelation has its practitioners indulging in blog spam. The underhand always find an underhand way of bucking the system.

Let me welcome you to ChelationTherapyTKV. Quite obviously a spam blog due to the fact that is totally dead apart from ‘Sarah’ its alleged owner. This spam blog is relatively new and thus won’t do very well in search engines yet. In another 9 months or so it should be doing very well for its keyphrases. And boy aren’t _they_ obvious? Nearly _one tenth_ of all words on the front page alone were ‘chelation’. And they made sure the ,

and elements were well populated too. Oh and of course, there’s the obligatory AdSense campaign as well.

And tucked away in the in page links – what do we find? Links to very er, reputable companies such as….Energy Patch. Not _too_ sure how this applies to Chelation but hey – they probably were prepared to pay more for the link on the home page of the blog.

They also link to ArticleInsider which appears to be another SEO spam trap. “Click here for a leading Chelation Therapy for Autism resource” screams the page and helpfully links to CardioRenew – a bunch of quacks pushing EDTA for heart patients. Great autism resource. But wait – ArticleInsider has *loads* of helpful links on the left: if you visit every page you get a different Chelationist link everytime – I wonder how much the chelationists paid these spammers to set up the campaign?

Anyway, back to the blog. Yet another ‘article’ stuffed full of keywords and engine-friendly spam links us through to another spammed up landing page (a landing page is exactly what it sounds like – a page specifically set up for spammers to point to which in turn points to lots of different commercial spammers) – welcome to the authoritative Find Articles where no tin of spam is left unturned to aid you in your search for quackery. Google throw pages like this off their index each and every day. But first they have to know about them so I helpfully reported this virtual stew of spammery.

I also came across the caring folk at the Sanoviv clinic. How cool is that? Even big shot clinics pay for spammers to peddle their shit.

And so it seems that Chelation has joined forces with porn peddlers, Viagra hucksters, penis enlargement specialists, Telesales, phishers and other assorted lowlife. Quelle surprise.

Chelation: Discarded By Most Parents

4 Sep

In a recent study entitled:

Internet survey of treatments used by parents of children with autism.

Vanessa A. Green, Keenan A. Pituch, Jonathan Itchon,Aram Choi, Mark O’Reilly, Jeff Sigafoos of the Department of Educational Psychology at the University of Texas looked at what treatments those parents (worldwide) who used interventions with their autistic kids actually used. They had 552 usable returns. One of the most fascinating bits of the study was the fact that they asked parents to indicate next to each of the 111 treatments listed what they used _now_ and what they’d used in the _past_.

The most popular treatment, coming in at number 1 for 70% of parents currently using it and 23.2% who used it in the past was Speech Therapy. Next was Visual Schedules, Sensory Integration, ABA and Social Stories. In each of these treatments the percentage using it now was higher than the percentage who used to use it and stopped for some reason.

Most interesting to me was the position of Chelation. Chelation was the 33rd most popular treatment garnering 7.4% of the vote for parents currently using it (its less popular than Homeopathy). Fascinatingly though, the percentage of parents who used to use it and who went on to abandon it came in _higher_ than that at 7.8%.

Detoxification came in bottom as the least popular treatment for the main groupings of treatment (as oppose to individual treatments) and also came bottom for all 3 main ‘severity’ groupings for autism (AS, Mild and Severe)

The authors say:

Comparison of past and current use (Table 2) suggests that many treatments were implemented for a period of time, but then abandoned. We do not know how long such treatments were used nor why they were discontinued.

I can hazard a guess. Recently Erik Nanstiel of AutismMedia (a pro-Chelation propaganda site) told me that Chelation typically lasts for 18 months to 2 years. I surmise that given that more people used to use chelation than use it now, it was tried for this period and found to be ineffective and abandoned in favour of more useful treatments.

It cannot, however, be due to recovery. This survey was taken by parents who’s kids were still considered autistic and who were all still trying differing treatments. If the Chelation had worked, these parents would have no need of any more treatments.

Also of interest was the authors finding that:

The mean number of current treatments being used by parents was seven, which was similar to the mean number of treatments used in the past (n = 8).

So it seems that Chelation is rarely used in isolation. Given that, it seems highly unlikely to account for unmitigated success reported by some parents.

On The Death Of An Autistic Child

29 Aug

Its been an emotional few days.

The whole community, from the staunchest biomed to the most steadfast Neurodiversity supporter was shocked by the death of an autistic child.

How that shock has expressed itself is very revealing. The main instigators on the Evidence of Harm email list elected to express their condolences to the Doctors who administered the treatment. JB Handley elected to regurgitate a load of corrupted stats that meant less than nothing. David Kirby decided to cover his well-shod arse with a ‘Wha??? EDTA??? Wha??? Never heard of it??? Its the Scientists fault’… for not studying a treatment for a condition there no evidence to support and which Pediatrics, amongst many, many others have stated repeatedly was dangerous.

I’ve posted calmly about it and I’ve posted angrily about it. I’m still not sure that the main point I was making was well made. This is because I was upset, shaken and – occasionally – furious at what I saw as the vapid complacency of a few people.

Never mind – a child is dead. That should make everyone angry. Why? Because using chelation to treat autism (and please, don’t anyone offend my tender sensibilities by pretending you think that wasn’t what was going on) is bogus.

Look – in order to legitimise the use of Chelation, you first have to prove a causative mercury element to autism. *All* the science refutes such a causative connection. *None* supports it. Using chelation means you are using a treatment for a condition that doesn’t exist. Now you, dear reader, may _believe_ in such a connection but _belief_ is not _evidence_ .

Chelation is a dangerous procedure – however one does it. For kids its especially dangerous. For autistic kids, its an _unnecessary_ dangerous treatment.

I want to introduce you now to a story you may have heard before. Before you read it I want to tell you that in its basics, its _exactly_ the same as this one. A little autistic boy dies following an experimental, untested procedure. When you’ve read it I’d really like to hear from you how I’m wrong and how that case is different than this case.

OK – lets start:

The adults formed a circle around the boy and placed their hands lightly over him as they prayed for him, Hemphill said.

“[They] were just praying for him and asking God to deliver him from the spirit that he had,” Hemphill said. “The little boy had spirits in him, and we was asking God to deliver him.”

Hemphill said the prayers were in accordance with Matthew 12:43, which says, “When an evil spirit comes out of a man, it goes through arid places seeking rest and does not find it.”

At the end of the prayers, one of the women noticed that Terrance was not breathing. One of the adults called 911, but when emergency services arrived around 11 p.m., the boy was dead, Hemphill said.

Hemphill said Terrance was not restrained. He was seated in the center of the group with his hands under a sheet “because he had started scratching,” Hemphill said, but the sheet was only lightly placed over him and was not tied.

“Nobody wants to see nobody pass away, because we love the child,” he said.

Go read it all.

They loved the child so much they conducted an unverified, untested, highly criticised, unproven treatment on him that either led to or directly caused his death.

I’d also like to hear your opinions on autism being described as ‘an evil spirit’ because that doesn’t sound too far away from ‘the hell of autism’ (a common phrase amongst mercury mums) to me.

EDTA: A Morality Play Part II

26 Aug

This wasn’t supposed to be in two parts. It was just that I was so sickened by hearing mercury apologists try and spin this into someone – anyones – Else’s fault than Usman/Kerry’s or indirectly, theirs that didn’t have the heart to finish it then. I’ll try now.

Lets go through the facts. EDTA is approved for chelation of lead. There is some debate whether or not its approved for chelating mercury. EDTA has a poor affinity for Mercury regardless. What can we deduce from that? Either pro-chelationists believe that autism is both mercury _and_ lead poisoning or that lead ‘gets in the way’ of chelating mercury or they simply don’t care and just want to get on chelating because they heard chelation cures autism.

Spinning The Facts

JB Handley says that this tragedy is the fault of the health care system because they don’t conduct trials into chelations effectiveness for autism. This argument is facile. What the US health care system _does_ say regarding chelation is ‘don’t do it, its unproven and can’t be assumed to be safe’. People like Usman/Kerry ignore this advice and go ahead and chelate anyway. A boy dies. JB Handley says: ‘See? Its the health care systems fault!’. Pick the logic out of that if you can.

Handley also goes on (as does Schafer) to explain how dangerous other forms of treatment for autism are. Drugs like Ritalin. I completely agree with him. He then goes on to list all the vaccines reported deaths to the VAERS database. Unfortunately he neglects to mention how corrupt the VAERS database is:

The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database.

Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.

Neurodiversity.com

Morality and Perspective

Lately, a few of us in the Neurodiversity movement and a few of the people in the biomed movement have tried to find ways to talk to each other without it descending into flame war after flame war. This process was instigated by Wade Rankin and supported by Ginger at their respective blogs.

Lili from AspiesForFreedom, Clay from AutAdvo, Kathleen from Neurodiversity, Janet Norman Bain and myself have been amongst those who’ve responded with hope and interest.

I don’t suppose the core of our differences will ever be resolved (mercury is/causes autism and chelation is the cure) but I do think its laudable that we can all try as a group to understand each other.

But….(there’s always a ‘but’)…..its very difficult for me to understand how anyone could choose to put their child in harms way – _fatal_ harms way as we know now – for the sake of development that will probably occur anyway. This for me is the absolute root of the divergence between our two camps:

They (not necessarily Wade or Ginger, I mean the biomed movement as a whole) believe that either autism itself or the comorbidities associated with it (and a lot make no real differentiation) impedes their kids development so much that it requires very quick intervention (referred to in biomed circles as ‘cure’ or ‘reversal’). Their general stance is that any kind of intervention is better than doing nothing as doing nothing condemns that child to the ‘hell’ of autism.

When I look at that point of view I’m simply aghast. I find it incorrect on so many levels its untrue. Firstly, autism and comorbidities associated with autism are _not_ interchangeable. Gastric issues are a comorbidity of autism. Lack of speech is a comorbidity of autism (before anyone jumps on me ‘lack of speech’ is not the same as ‘lack of communication’ which _does_ form part of the triad of differences used to diagnose autism). For a ‘symptom’ to make it onto the diagnostic criteria for autism it must mean that that symptom is common in _every_ autistic. A comorbidity is something that can exist in only a few autistics or can exist in non-autistics. This is why you can’t use these things to diagnose autism.

Now what about impediment to development? Autism is called as a ‘developmental disorder’ by the medical establishment. Nowhere in current medical literature that I can find however does it say that development is _stopped_ by autism. This is because it isn’t: *all kids, regardless of neurology, develop in some way*.

One of the things that really disturbs the biomed crowd is their kids inability to speak. I’ve read posts on the Evidence of Harm list that cite this as one of the primary reasons for getting into chelation in the first place. However, the fact is that 90% of all autistic kids go on to speak before the age of 9 (1). They often list other disturbing behavioural issues their kids display such as smearing faeces on walls, biting, hitting etc. Toileting is another difficulty they cite. I have experience with all these things with my own kids and yet they no longer present. Why? They grew out of it. They developed. We examined the issue and worked on it and it went away. Here’s a post by a parent who approached the adults on Aspies For Freedom asking for help in understanding some of the issues her child was facing. Here’s one excerpt:

My next question is VERY embarassing!! Why is my daughter interested in private parts? She definitely has no idea what their for (besides using them for the bathroom). She has never been abused in any way. She just has a curiosity for other peoples privates. How can I get her to stop feeling people up?

The advice came thick and fast to that and other issues this Mum asked for help with. I know from speaking privately with this Mum that her daughters issues in this specific area are well on their way to being resolved.

Kids develop. Their behaviour changes. It might not seem like it when you’re scrubbing pooh off a bedroom wall at 3am but they do.

Its always seemed to me that treatments like Chelation are the Big Mac of parenting. They fulfill a role alright but fulfill it for who? Is it fulfilling for a child who may be harmed or die? Is it fulfilling for a child to come to think of his autism as a medical issue rather than a cognitive difference? Or is this ‘fast food parenting’ for parents? Is it a device to enable them to think that they are doing something? Are there parents out there who have such little self esteem that they believe in biomedical treatments over their own abilities as parents? Please be aware that this isn’t a question of blame or bad parenting. Its more a case of non-confident parenting. And where does that lack of confidence come from?

it can only come from one place – if we as parents are not confident in our abilities to parent our autistic kids, to the point we are more willing to place them in harms way, then that can only be as a result of ignorance about that which we are expected to cope with – autism. Whats the best way to tackle ignorance? ‘Education, education, education’ to quote Tony Blair.

Unfortunately, a lot (the majority) of biomed parents exist and foster more of this ignorance. When Boyd Haley refers to autistics as ‘mad’ and when Evidence of Harm list-members refer to autistics as ‘Parent Worst Nightmare’ or ‘Walking bio-hazards’ or people describe the lives of autistics as ‘a tortured hell’ without biomed intervention then we’re in trouble.

When someone who calls himself an autism advocate says that:

If one can typically speak, write, sign, etc., even if they have a number of other shared characteristics with autism, they are not autistic

or:

The irony here is that if someone has enough language skills to effectively complain about the treatment of autistics, then they themselves cannot be autistic

Neurodiversity.com

Then ignorance is fostered. And as long as we continue to promote and foster ignorance about both the nature of autism (as oppose to the nature of comorbidities) and about what autism _is_ , then we are doomed to simply produce another generation of people who are ignorant about autism. This is no good for either our kids, the future autistic kids yet to be born or autistic adults who have to live with the denigration that who they are is neither acceptable to society at large nor to those who have hijacked the term ‘advocacy’.

One thing is certain though. My child, Lenny Schafer’s child, JB Handely’s child, Wade Rankin’s child, Camille Clarke’s child – if they are autistic then they will grow up autistic. I hope for the sake of _all_ these children destined to be adults that ignorance has abated somewhat before they take their adult places in society. I hope that parents become more empowered through education about _autism_ as oppose to education about _treatments_ . I hope autism and the idea of aware, self advocating autistics can stop being seen by some as a threat and more of a potential for their own child. How can anyone read AutismDiva’s blog, or Amanda Baggs’ blog and not be consumed by hope and aspirations that one’s own daughter could be as strong, purposeful and exemplary? They did it without chelation or biomed ‘cures’. My daughter is doing it without chelation or biomed ‘cures’.

Parents can educate themselves primarily by _talking to adult autistics_ – the very people their children will become. In order to banish ignorance, you must accept what is inevitable and educate yourself about _autism_ and about _autistics_ . When it comes to how autistics think or how autistics act, Lenny Schafer is not an expert. You are not an expert. No Doctor is an expert (unless s/he happens to be autistic). When it comes to autism – *autistics are the experts* .

When you use chelation to treat autism you are effectively using a nail gun to attach a sticking plaster to a cut. And when you do, you are only adding to the mystique and stigma surrounding autism – talk to autistics, wave away the mist.

(1) C. Lord, S. Risi, A. Pickles, “Trajectory of language development in autistic spectrum disorders,” in Developmental Language Disorders: From Phenotypes to Etiologies, edited by Mabel L.Rice and Steven F.Warren (Lawrence Erlbaum Associates, 2004) (Via).

EDTA: A Morality Play Part I

25 Aug

The form of Chelation that killed 5 year old autistic Abubakar Tariq Nadama is called EDTA (ethylenediaminetetraacetic acid). It is administered by IV for ‘maximum efficiency’.

Amongst its other uses apparently is as an industrial chemical to clean scale from pipes in chemical plants and in fact is commonly found in cleaning products due to its ability to bind certain minerals very well. It is not however, very effective in binding to mercury. This makes its choice as a chelator to treat autism – who’s detractors claim is caused by mercury in vaccines – very peculiar indeed.

As someone wiser than me (and who wishes to remain anonymous) in matters of chemistry remarked –

perhaps (we) should take a look at the MSDS for EDTA and decide if injecting a high concentration of a real toxin to combat an imaginary toxin makes any sense at all.

Good point. Here’s the MSDS for EDTA.

Lets look at the MSDS for EDTA in depth. Here’s what we find:

THIS PRODUCT MAY CONTAIN SMALL AMOUNTS OF NITRILOACETIC ACID (NTA) AND/OR ITS’ SALTS. ALL THREE FORMS HAVE BEEN *FOUND TO BE CARCINOGENIC TO MICE AND/OR RATS WHEN ADMINISTERED AT HIGH LEVELS*. NTA IS LISTED
UNDER THE STATE OF CALIFORNIA’S PROPOSITION 65 AS *A CHEMICAL KNOWN TO THE STATE OF CALIFORNIA TO CAUSE CANCER*.

Source.

So here we have the ultimate irony. Pro-chelationists have been using a method of chelation that a) involves injection of a known toxin and b) is a known cause of cancer. The depths of irresponsibility some people are prepared to sink to astounds me. Consider the hypocrisy of a bunch of people marching to rid vaccines of a toxin when one of the methods they utilise to get rid of this toxin (they claim) is…a toxin with a causative link to cancer.

This what comes of indulging your pet theory without scientific validity. People die needlessly.

With thanks to ‘S’ for sending me links.

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