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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.

Pinks Disease And Autism

27 Sep

NoMercury, the website of Dr Alan and Lujene Clark RN is a website dedicated to proving the idea that mercury causes autism. Alan Clark writes a loooooonngg open letter about it – an amassing of the evidence one assumes – in a page amusingly entitled ‘the science’.

Lots of people (including me) have debunked a lot of whats on that page and what the Clark’s believe and more will do so in the future no doubt. What I’ve been meaning to tackle for some time is their attempt to provide historical medical data to back up their claims that mercury causes autism.

In order to do this, they make use of a form of mercury poisoning called ‘Pinks disease’ which is a phenomenon rarely seen these days but which went through a few periods of high prominence, particularly in the early 20th century and again in the mid 50’s in the UK.

The Clarke’s make use of Pinks disease in order to try and explain why thiomersal only causes autism in such a very low set of kids:

Why does mercury toxicity at levels found in vaccines seem to only affect a subgroup of children, predominantly males? History provides the answer. The same target subgroup was noted in the early 20th Century during the epidemic of Pink’s Disease (Acrodynia) that was determined to be caused by mercury in teething powders given to children. About 1 in 500 children were afflicted, and some died as a result of this toxic insult.

Firstly, lets note that despite Clark’s claims above neither he nor Pinks disease reveal why autism affects mainly boys. There are no valid scientific theories that account for that fact. And lets be clear – in order for thiomersal to be taken seriously as a causative of autism, there damn well needs be. The absence of such data is (just like the evidence against the so called autism epidemic) another major unraveling of the conspiracy-theorists shroud of mystery.

Clarke then goes on to quote Dr. Thomas Clarkson, who, in his ‘The three modern faces of Mercury’ said:

It is interesting that not a single case of Acrodynia has been reported from exposure to vaccines despite the propensity of thimerosal to produce this syndrome when given in sufficient amounts.

Which is a great point. Clarke, of course, takes issue with it:

That remark is quite interesting in the face of many parental reports of just such a rash occurring in their child after a bolus of Thimerosal-laden vaccines in the 1990’s.

He then goes onto ‘prove’ his point by linking to a PDF on his own site that not only details a case study of Pinks disease but includes pictures so we can judge how Pinks disease makes kids hands and feet pink.

Intriguingly, I came across a differing version of these exact same images. There were two main differences between this report and the Clark’s – firstly, the report I found is hosted on a medical science database which tends to lend it a bit more credence. And the second difference? Well go see for yourself. Is it just me or has the level of ‘pinkness’ seemingly and magically drained away from the report on the Clarks website? Far be it from me to accuse anyone in the Clarke household of being a dab hand with Photoshop but if I was told I was going to look at something called Pinks disease I’d expect something more along the lines of whats on the Science site than whats on the Clarks site. You, Dear Reader, can make up your own mind.

Clarke then goes on to say:

Acrodynia is probably the most widely recognized form of mercury poisoning. Its symptoms have been documented as early as 1931 by Bancroft, Grant, Tanner, et al (Journal Lancet 71:56, 1931) and studied more extensively in the 1950’s by Warkany and Hubbard. In fact, a statement in some of their earlier work *is almost eerily predictive of the symptoms we are seeing today* since the iatrogenic exposure to mercury was increased significantly by the rapidly expanded immunization schedule beginning around the early 1990’s. Have their words from 1953 come back to haunt the medical community because mercury was left in vaccines?

Fascinating stuff. Except Clarke glosses over the pathology of Pinks disease. I mean, from what Clarke says about Pinks disease above you’d expect the pathology of Pinks and autism to be very similar.

The child becomes listless, no longer interested in play, restless and irritable. Generalised inconsistent rashes, which are protean, recur from time to time. Early, the tips of the fingers, toes, and nose acquire a pinkish colour and later the hands and feet become a dusky pink, with patchy areas of ischemia and cyanotic congestion. The colouring shades off at the wrists and ankles. These changes in the extremities are the most distinctive features of the syndrome and are responsible for the term pink disease. Frequently the cheeks and the tip of the nose acquire a scarlet colour.

As the disease becomes established, the sweat glands are enormously dilated and enlarged and perspiration is profuse. Secondary infection may lead to a severe pyoderma (a pus-like skin disease). There is desquamation of the soles and palms, which, though usually superficial, may be severe and recur during the course of the disease. The fingers and toes appear oedematous; the swelling is due to hyperplasia and hyperkeratosis of the skin. An outstanding symptom is constant pruritus with excruciating pain in the hands and feet. Children will rub their hands together for hours, and older children will complain of a severe burning sensation.

The nails become dark and frequently drop off. Occasionally, gangrene of the toes and fingers develop and trophic ulcers may result from the constant rubbing of the hands and feet. The hair tends to fall out and is often pulled out by the child.

There is photophobia without evidence of local inflammation of the eyes. The children shield their eyes or bury their faces in their pillows. The lax ligaments and hypotonia permit the children to assume unusual positions. In extreme cases the teeth may be lost; necrosis of the jaw bones frequently follows. Initially, the gums appear normal except for a slightly deeper red colour, later they become inflamed and swollen. Salivation then becomes pronounced, and the saliva often flows from the mouth in a constant stream. Anorexia is prominent, but because of the excessive perspiration large quantities of water are consumed. There may be diarrhoea and prolapse of the rectum is a frequent complication. The blood pressure and pulse rate may be increased significantly. Fever is usually not present unless there is some complication such as urinary tract infection or bronchopneumonia. Neurological symptoms are an important part of the syndrome and include neuritis, mental apathy, and irritability.

Early in the disease the tendon reflexes may be normal or increased, but later they disappear. There is not a true motor paralysis, but because of the soft, flabby musculature the child has no desire to walk and is hypotonic, listless and hypomotile. The severe pain prevents normal sleep. There is no time when a child with acrodynia appears happy or comfortable; the child does not play or smile, but appears dejected and melancholic, a picture of abject misery.

Neonatology.

Does that sound anything – anything at all – like autism or autistic people you know? No, me neither. Clarke follows up with what one assumes is his knock out blow – ‘Autism – a Novel Form of mercury Poisoning’. A study that wasn’t good enough to make it into a proper science journal. One of the conclusions in that study and which Clarke points proudly to is:

Due to the extensive parallels between autism and HgP [mercury poisoning], the likelihood of a causal relationship is great.

Er, yeah. Extensive parallels. Right. It seems that the medical science of the time (and now) says that Pinks disease has a causal relationship with mercury. It also seems very obvious to me that Pinks disease shares no commonality with autism whatsoever. It also seems clear to me that Clark uses Pinks disease in a vague manner with nothing substantive to back up his assertion at all. We’re back to square one: Yes, mercury is bad – no there’s no evidence it causes autism.

MMR, David & Goliath

21 Sep

I came across an article today by F. Edward Yazbak, MD, FAAP. He’s part of the loose coalition of people who support the MMR/Thiomersal/autism association. The article was mainly about how Thiomersal in Europe is displayed with a skull and crossbones. I may tackle that another time but for now I want to take issue with the following introduction:

In the United Kingdom, the issue of MMR remains in the forefront with a David and Goliath scenario unfolding for the last seven years: On one side, the mighty Government, the Prime-Minister personally, the Health authorities, the Press –some of it very ugly- and large useless epidemiological studies and on the other side, Andrew Wakefield with his study of 12 children and a small group of faithful devoted and informed parents.

There is enough scientific evidence to show that both the MMR vaccine and Thimerosal in other vaccines precipitate autistic regression in genetically-predisposed children, not withstanding the opinions of biased “experts,” a misleading IOM special committee report and obviously the CDC.

Red Flags Weekly.

He also links to a more indepth article apparently but I can’t access it from the link provided.

Lets just tackle these statements as someone who _is_ British and lives in the UK.

The MMR issue is not in the forefront of anything. It remains sporadically in the news due to the efforts of Times journalist Brian Deer. Andrew Wakefield by comparison has fled the country and refuses to be interviewed by Deer. There is indeed a ‘small group’ of press and parents but whilst they are faithful and devoted, they are far from informed.

The facts of the matter are that Andrew Wakefield says he has found an autism related bowel disease in some autistic kids. He may well have, gastric issues are a known comorbidity in some people. There is however, _no link to MMR causing this condition_. No science exists that shows a causative link.

And far from there being just ‘large useless epidemiological studies’ to refute Wakefields claims there are actual ‘hard science’ studies that refute his work.

Firstly is the evidence of his _own lab_.

Even as Andrew Wakefield launched his attack on MMR in 1998, at a press conference and in a video, coinciding with a Lancet paper, he knew that his own laboratory had tested his theory: that the ultimate culprit for the children’s autism was measles virus in the vaccine. Royal Free researcher Nick Chadwick, carrying out sophisticated molecular analysis of samples from the children, using methods agreed by Wakefield, found no trace of measles virus.

Brian Deer.

And lately a new study (which will feature in a BBC documentary) shows that:

Scientists at Guy’s Hospital, in London, have been studying a large group of 100 autistic children. They examined their blood samples, looking for traces of the measles virus in their blood and in that of another group of non-autistic children. The samples were analysed in some of Britain’s leading laboratories, using the most sensitive methods available. The scientists found that 99 per cent of the samples did not contain any trace of the measles virus. Crucially, there was no difference between the autistic and non-autistic children

Awares.

Its also worth noting that *all* of the co-authors of the original Lancet paper have rescinded their position leaving Wakefield standing alone. Next year he will face misconduct charges in the UK from the GMC.

Its further worth noting that at the time he began to criticise the MMR and implicate it in autism causation, Wakefield also claimed he had found another, safer way to vaccinate kids which he duly filed a Patent application for. He later denied this on a website and through his solicitors, however Brain Deer unearthed Wakefield’s Patent application for all to see.

F. Edward Yazbak talks of bias. We have a saying in the UK Sir – ‘people who live in glass houses shouldn’t throw stones’.

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.

Trouble In Paradise? Thoughtful House with Staffing Problems

29 Aug

A few of you (if you’re a Brit like me) may remember after the MMR debacle that articles in the Sunday Times and presented in a Channel 4 ‘Dispatches’ programme followed investigative journalist Brian Deer’s progress as he totally debunked Andrew Wakefields science to the point where the GMC (General Medical Council) will be investigating Wakefields fitness to practice medicine.

I came across this new entry on Brian Deer’s own site about Andrew Wakefield.

In it Mr Deer discusses the strange case of some disappearing pages from Thoughtful Houses’ (very prosaic) website. These pages related to biographies and speaking dates for two key board members Arthur Krigsman and Bryan Jepson – these two being essential components in Wakefield’s operation in both a medical and financial sense:

This looked like good business, but recent developments suggest that something in Austin has changed. In the middle of August 2005, the Thoughtful House website underwent dramatic reconfiguration. The “Mount Rushmore” line-up of Wakefield, Krigsman, Jepson and Granpeesheh, vanished from the welcome page. And previously extensive details of the Wakefield operation’s clinical services were replaced with: “This page is under construction”.

MMR Scandal

Why is the disappearance of these two such an issue? Well because without them Wakefield can’t treat all the kids he insists come to him rather than get treated locally:

In short, it appears that Thoughtful House clinical services are on hold, with its advertised clinicians off the scene. What this means for parents, and more importantly, their children, will be reported as soon as we know.

MMR Scandal

The whole Thoughtful House venture seems somewhat off-course. Could it be that these two essential cogs in Wakefields scheme realised the ‘bullshit factor’ of what they’d signed up for?

aims to unravel what the Thoughtful House website described as Wakefield’s “discovery of autistic enterocolitis”. This discovery – an alleged gut inflammation distinctive to autism – has yet to be substantiated by any other group, despite parents widely believing that it has. Specialists in this field deny that any such distinctive condition exists, with even the influential paediatric endoscopist Dr Tim Buie of Harvard University, who treads the same conference circuit boards as Wakefield, saying that he has seen nothing specific to autistic children.

MMR Scandal

Go have a read of the whole thing. Its an absorbing piece.

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.

Better Dead Than Autistic

24 Aug

So its true.

A five year old autistic boy died on Tuesday while receiving chelation.

Since this blog began and I started addressing Chelation I’ve had numerous responses telling me I was wrong to attack Chelation as it was perfectly safe. That I was a child abuser because I refused to chelate my child. That it was better to try an unknown and unproven proceedure then to leave them in the hell of autism.

RFK Jr raised his profile with it, David Kirby made his name from it, lots of people marched for their right to practice it. Erik Nanstiel has a website that proudly shows parents chelating their kids.

When this story first started doing the rounds I checked into the Evidence of Harm mail list. They are very upset about this because they’re mostly parents…..right? No. Because they’re worried about how it might affect their political campaign and how upsetting it might be for the Practice concerned:

Yeah, just imagine big pharma jumping on this to try to shut down our efforts to help our children get well again!

EoH List

This will hit Dr. Usman especially hard…she is a VERY caring Physician whose own child died (from a food allergy incident- not chelation but to experience the death of a child….) so you can see how this will devastate her personally

EoH List

And how many children died during the night of mercury poisoning that we will never hear about? How many have died of mercury induced seizures, peanut allergy, ….?

No treatment — nothing is without risk. To date, chelation has been the only hope many of our families have. And what are the alternatives? Life in a gastro hell with seizures.

My hearts and prayers go out to this family. But it only strengthens my and my husbands resolve to do everything we can to help our Ryan. His life was a tortured hell before biomedical — and he was one of the kids who was actually improving before intervention.

EoH List

I commented on leaking out tidbits of information because when there is nothing verifiable, it’s just fear mongering. this could be a bad setback for treatments and doctors.

EoH List

I shed tears for the parents and other loved ones and have compassion and empathy for the doctor and their staff.

EoH List

Its easy to see what the priorities here are. Lots of worry that ‘the cause’ might be affected. And lots of expressions of sympathy for the family and Doctors concerned. However I went through 22 messages and _not once_ did anyone on that list express sorrow for the dead autistic 5 year old. I wonder why.

Better dead than autistic. Better dead than an inconvenient ‘parents worst nightmare’. Better dead than making me get off my fat arse and work _with_ my child.

Who’s to say this boy’s parents didn’t read the EoH list and resolve to Chelate due to what they read? Maybe they were inspired by the buffoons at Moms Against Mercury. Maybe they were terrified by Kirby’s book. Maybe RFK Jr’s rhetoric and ego spurred them into action. Maybe Erik Nanstiel’s video’s led them to try it.

Whatever. You people set the cost. This 5 year old boy paid it. Sacrificied on the alter of your ignorance and political goals.

Think of this boy everytime you upload another video to your site, or write another inflammatory piece of rhetoric, or get your boy-reporter face on TV or persuade some other ignoramus that chelation is totally safe. He wasn’t a political tool, he was just a little boy who’s only ‘crime’ was that he was born autistic to a set of parents unable to see the value in that or even just try and meet him halfway.

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