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Into The Unknown With The Unknowing

31 Jan

The unknown is exciting. As a species we seem innately curious about seeing whats over the next hill, beyond the next valley, what happens if we heat this liquid to its boiling point, etc etc. But fairly obviously, we quickly realised that if we didn’t exert some level of control over the things we were curious enough about to examine closely then the results were arbitrary and meaningless.

“Hey, look at that!” we exclaimed to ourselves, “we’ve just invented the scientific method. How cool are we?”.

Unfortunately, as well as being logical, nuanced creatures capable of appreciating such things as the pathos in satire we’re also reactionary and blinkered. As someone recently remarked:

Too many people on all sides of the debate(s) seem to wear blinders that prevent them from acknowledging how little we all know.

Wade Rankin.

A statement I fully support. However, there are certain things that we need to be certain about when we treat autistic children.

Is chelation safe? Here’s Wade again, quoting a commenter called Random John:

At any rate, it’s still pretty unclear why chelation therapy seems to be successful for some children, but not for others. The polarity of the thimerosal and chelation debates does not seem to cover the ground necessary to understand what’s really going on.

Which is very true. Unfortunately, its yet another example of shutting the barn door after the horse has bolted. To worry about these things after you’re already treating an autistic child with something like chelation is quite simply stupid. If there are people who are concerned about what effects chelation may or may not have on autistic children then basic medical principles need to be applied: first, do no harm.

That means you need to conduct safety trials before using something that has the following warning on it:

The use of this drug [EDTA] in any particular patient is recommended only when the severity of the clinical condition justifies the aggressive measure associated with this type of therapy.

Recently such people as Dr. Mary Jean Brown, Chief of the Lead Poisoning Prevention Branch of the Centers for Disease Control claimed that if chelators were used properly then they’d be safe. I take extreme issue with this viewpoint.

Chelation is essentially a chemical process – it alters the chemical composition of the body. Bearing that in mind, consider the following:

This review focuses on recent advances in the in vivo study of the whole brain in idiopathic autism…..Diffuse abnormalities of brain chemical concentrations, are…found. Abnormalities of ….brain chemistry…are evident by early childhood….

Source

So, the brains of autistic people are chemically different then the brains of non-autistics. Given that fact, is it a) stupid or b) clever to use a process that alters the chemical composition of the person and which has never undergone any safety trials in regards to autism?

There’s a whole bunch of people here who need to take a drastic step backwards and do some basic safety trials on what is, irrespective of their beliefs, a poorly understood and potentially dangerous/fatal process.

Chelation Death: The Coroner Speaks (subtitled: Look Before You Leap)

6 Jan

A few months ago, Abubakar Tariq Nadama, a 5 year old autistic boy died at the office of Dr Roy Kerry after undergoing IV EDTA chelation therapy. I wrote about it extensively at the time, as did Autism Diva and Orac.

Today, the coroners report has come in:

In layman’s terms, the administration of ethylene diamine tetra-acetate, commonly known as chelation, resulted in a lack of oxygen to the brain as well as irreversible heart damage, said Allegheny County Deputy Coroner Ed Strimlan.

We determined there’s a direct correlation between the EDTA and the lack of oxygen to the brain and the heart muscle damage. It’s a total package, based on the autopsy, the histology [tissue sampling] and the toxicology [blood sampling],” Mr. Strimlan said.

Source.

At the time, anti-vaxxers, anti-thiomersalers and pro-chelators said we should wait for the results of the report before issuing judgment. However, they failed to extend that same criteria to Dr Rashid Buttar who decided to include EDTA in his new treatment protocol. Dr Buttar is frequently described as a hero amongst the anti-vac’s, anti-thiomersal and pro-chelators and yet they seem strangely reluctant to comment on the efficacy and/or safety of his new protocol. I have repeatedly asked commenter’s to this site the following question:

Given that we don’t know the exact role that IV EDTA played in young Tariq’s death, on what level is it a good idea for Rashid Buttar to start using it in a new protocol?

I have never received an answer to this question. The question has been shirked by at least four separate comments on approximately 6 separate occasions.

Now, of course, we _do_ know that EDTA has ‘a direct correlation’ to the lack of oxygen and heart muscle damage that poor Tariq sustained and which killed him. And still no one is prepared to stand up from the pro-chelationist side and state they think Buttar is being (once again) dangerously irresponsible. He (Buttar) has a reputation as a forceful man – a bit like a bull in a china shop. As we know from recent experience from another man with a similar reputation – such people seldom stop to look before they leap. So convinced they are in their own ‘rightness’ they they plough ahead without pause or consideration.

Now we know for sure that Chelation did play a role in a young boys death – a boy who’s dead _solely because he was autistic_ – I invite commenter’s from an anti-vax, anti-thiomersal, pro-chelation perspective to call for investigations into Dr Roy Kerry under who’s treatment Tariq died and to call for Rashid Buttar to exercise more care.

Speaking of ‘more care’ and ‘looking before one leaps’, yet another anti-thiomersal activist, Dan Olmsted, recently wrote a column lauding Gold salts as a potential chelator of mercury. It seemed he was inundated with emails from scientists expressing grave concern. So much so that he wrote an obviously unplanned and somewhat panicky reaction piece which included the line:

Clearly, given the serious risks, figuring this out is a job best left to the experts.

What a stunning piece of ‘shutting the barn door after horse has bolted’ syndrome. You’re absolutely right Mr Olmsted, this _is_ a case best left to experts. And yet you didn’t let that stop you in any of your previous pieces. Lets hope that no one read your first piece without reading your second one. Lets hope they didn’t go out and pump their kids full of Gold salts and lets hope that no one gets hurt.

Roy Kerry, Rashid Buttar, Dan Olmsted – next time , look before you leap.

A Fertile Breeding Ground

11 Dec

I’ve said a few times on here and a few times on other blogs that it is dangerous and irresponsible to maintain an absolutist position on just about anything to do with autism. I can’t remember who said it but whenever I see someone claiming to know for sure what causes autism or what the best course of treatment for autism is I recall a quote that goes something like this:

Follow the man seeking answers, flee from the man who says he knows them all.

However, on occasions I have been known to break this self-imposed belief. This is such an occasion.

Skeptico is a blogger that has commented a few times on various aspects of the thiomersal/mmr/autism ‘connection – notably a thorough debunking of the RFK Salon.com piece earlier this year.

Skeptico mailed me today to draw my attention to a comment made on his site to the effect that the wearing of a tinfoil hat designed to prevent alien abduction can successfully treat autism.

As of Dec. 2005 a hat with velostat worn by autistic children has improved their performance markedly. Michael Menkin is seeking more autistic children in the Seattle, Washington area to try the hat. Some of the autistic children who improved after wearing the hat with velostat for over three months are not related to UFOs or any alien phenomenon.

The researhc of Michael Menkin into alien abductions, with interview of several people with encounter experiences, was featured on KINGTV Evening News Program on November 16, 2005.

This is the sort of shit that one has to wade through to find decent research about autism. Is it on a par with the whole thiomersal/mercury thing? Well yes and no.

No because I can at least see a theoretical connection even if I don’t believe that theory and yes because its another example of a theory driven by anecdotal, unverified, untested belief.

Up until Skeptico mailed me this story, my favourite other crackpot theory was the idea that plastic cups cause autism. Again, this is the sort of mindless crap that detracts from valid science, strips autistic people of the dignity they deserve and only extends ignorance.

Notable in the plastic cup story is the role of one Dr. Stephanie Cave, one of the darlings of the thiomersal/autism connection and listed on page one of the Generation Rescue Hall of Fame. She lent support to a theory that claimed:

…that a toddler became seriously ill and, eventually, “began to exhibit autistic behavior,” after drinking from a plastic spill-proof cup made by Playtex. [Dallas-lawyer Brian R. Arnold ] claims the spill-proof cup was designed in a defective manner that allowed bacteria and mold to build in the cup. Alleging the bacteria caused the child’s condition, Arnold accused Playtex of negligence in distributing a defective cup and demanded $11 million in damages.

Cave claimed that the bacteria and mold caused Dysbiosis, a medical term used pretty much exclusively by the alternative health movement.

She was abetted by William Shaw who owns a laboratory famed amongst thiomersal = autism believers as providing accurate tests for elevated mercury. Shaw said that:

…the child had elevated levels of yeast by-products, indicating a “yeast/fungal overgrowth of the gastrointestinal tract.” Dr. Shaw says such yeast infections cause autism.

Unfortunately for Shaw, it seems that the bacteria found on the plastic cup was not the same sort found on the child in question. Good to know that these labs that so many people claim are accurate obviously double check their work.

Autism is a fertile breeding ground for such hocus-pocus and rubbish because it defies current understanding. That we let this sort of thing grow unchecked is dangerous for the health of children (one wonders if this child went on to be chelated based on such a pack of ineptitude and assumption), dangerous for those of us who wish to find a bit of respect for the state of being autistic and ultimately dangerous to us as a society that we are so willing to let such people treat our children.

This is why we need proper, peer reviewed science performed by those who are proponents of theories and treatments that currently have no efficacy or safety studies. If we continue down this road then treatments like the wearing of a tin foil hat used to prevent autism and alien abduction and causes like a plastic cup will become the norm and our children will truly become lost – not in autism but in the real hell of a frenzied knee-jerk search to treat the increasingly bizarre and to forget about what our _children_ who happen to be autistic need more than anything else. I hope you already know the answer to that. If you don’t then I suggest you step away from the quasi-science.

Rashid Buttar Recommending IV-EDTA Based ‘Therapy’

22 Nov

Orac has a long and incredibly worrying post up that reveals that Rashid Buttar, chelationist supreme, has taken a very worrying step down the road to quackery.

A few months ago, a 5 year old autistic boy died undergoing chelation therapy. Defenders of chelation at the time pointed out that IV EDTA was not a recognised treatment for autism chelationists.

However, that form of chelation therapy is exactly the sort of therapy that Rashid Buttar is apparently now implementing as part of a new protocol.

Why? Defenders of Rashid Buttar claim that he promotes his own TD DMPS because its safe – a lot of us think its safe because it doesn’t do anything. So why would he switch from a chelator specifically marketed and lauded as ‘safe’ to one that is associated with the death of a child?

I find Rashid Buttars role in the whole damn thing puzzling – he claimed he didn’t have time to submit his TD DMPS for independent review as he wanted to spend his time helping kids. Thats a bizarre bit of logic when you consider that if he _did_ submit TD DMPS for peer review and it was successful (ahem) then he would be in a position to reach a hundred, no a _thousand_ times as many kids. And now this. A bizarre and frightening step backwards to using a technique that is outdated amongst legitimate chelators – in the field of autism its notoriety is ensured with the death of a small autistic boy.

And its not only IV EDTA – apparently this new protocol utilises Ozone…..why? There’s no science that suggests this is a good idea and Orac’s piece has a frightening description of what Ozone can do and how it seems ‘Dr’ Buttar is overriding known safe doses – something of an irony considering his most vocal supporters claim that its an overdose of a known safety limit thats caused what he claims to be treating.

Most worryingly of all, it seems that Buttar is _already_ using these methods. Last time a lot of us expressed unease and worry about the end result of chelation for autistic children. It looks like thats what we’re reduced to doing again. I’m sure his defenders will find some way to rationalise it but I’m left simply hoping Orac’s information is wrong and that even Dr Buttar wouldn’t be so foolhardy. Of course, simply hoping didn’t do a whole lot of good last time, did it?

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.

The Coming Gold Rush

10 Sep

Prometheus publishes an article that I hope he doesn’t object to me reproducing below. The reason I do is due to the extreme importance of Prometheus’ message. Comments are turned off on my post. If you wish to comment follow this link or the one at the bottom of this post and comment on Prometheus’ blog:

From the “Evidence of Harm” Yahoo group:

With the news articles about the possibility of gold helping children with autism I wonder if something like this might help my grandson. I would like to know if anyone has given this to their child with autism.

Which was in response to a story by – who else! – Dan Olmsted, UPI’s senior autism-mercury editor. In his story, Mr. Olmsted has tracked down one of the patients in Leo Kanner’s landmark article on autism, Autistic Disturbances of Affective Contact (1943).
This man, identified as Donald T., is now 72 years old and experienced a significant, if not dramatic, improvement in his autistic behaviors at age 14 (or 12 – the story contradicts itself on this point) after receiving injections of gold salts as treatment for life-threatening rheumatoid arthritis (RA). Mr. Olmsted and – since the article – a growing number of parents of autistic children, postulate that the gold injections were the cause of his improvement. Puberty is another event that happened at about the same time, but was discounted.

Mr. Olmsted’s understanding of how gold might help autism is – as you might expect – tied in with the autism-mercury hyposthesis. In his article, Mr. Olmsted explains it thusly, in a quote from JB and Lisa Handley of “Generation Rescue”:

It is no surprise that gold salts improved Donald T.’s ‘autism.’ As gold miners as far back as the Roman Empire would tell you, gold and mercury have a strong binding affinity for each other, and the gold salts likely acted as a rudimentary chelator to help Donald T. detoxify. (Mercury is used in gold mining to separate small particles of gold from sand.)

Yes, mercury was (and still is) used to separate gold from its ore – metallic mercury. The gold dissolves (amalgamates) in the mercury. This reaction can only occur when both the gold and the mercury are in the metallic state.

The gold used to treat Donald T’s RA was a salt – the gold was an ion and not able to amalgamate with metallic mercury. In addition, mercury in animal tissue is also either ionized or chemically bonded with organic groups (e.g. methyl, ethyl, phenyl…) and also not able to form an amalgam.

None of this seems to have stopped the speculation that gold may be either the next “cure” for autism or, at the least, a vindication of the much-battered chelation therapy.

Clearly, the current state of our knowledge of the chemistry of gold and mercury does not support the “chelation hypothesis”. And the prospect of gold becoming the next “cure” for autism is very ominous.

I could go on and on about the potential toxicity of gold treatment, but I think that a 2001 study in the Annals of the Rheumatic Diseases said it the best:

GST [gold sodium thiomalate] is more toxic than MTX [methotrexate] but it remains an effective alternative in patients in whom MTX may not be tolerated…

Gold sodium thiomalate is injected gold and methotrexate is a cancer chemotherapeutic agent that is often used in more severe autoimmune diseases (of which RA is one).

In the right hands, with proper monitoring and for a disorder in which it is known to work, gold therapy is a useful – if not first line – treatment. However, our only indication that gold might help autism is a single case from the 1940’s.

This rather slim reed of evidence is made even slimmer by the fact that gold therapy has continued in used to the present time. Gold therapy is used in severe cases of juvenile rheumatoid arthritis (JRA) often enough that at least a few autistic children with JRA must have been treated with gold.

Yet the first we hear of this startling new therapy option is from a case that occurred nearly sixty years ago.

Before embarking on this 21st Century Gold Rush, I hope that someone will bother to look and see if any autistic children receiving gold for JRA or other autoimmune disorders have reported the same sort of improvement.

Lives may be in the balance.

Injectible and oral gold are much more toxic – and have the potential for much longer-lasting toxicity – than almost any of the other therapies currently advocated for autism.

Let’s look before we leap.

Comment on Prometheus’ blog

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).

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