Left Brain Right Brain

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.

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.

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).

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.

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.

Awful, awful news.

I hate to report sad news, but this story needs to be told. Today, a story will come out in the news about a family whose five year old child with autism died while undergoing chelation therapy. The family, from the Pittsburgh area, was seeing a “doctor” who claimed to follow the DAN! protocol. (Details are sketchy at this time — we are unsure of the doctor’s qualifications. We will keep you posted.)

The child died in the doctor’s office, while undergoing therapy.

Cindy Waeltermann
AutismLink Director

This isn’t the time for anger or condemnation but I would urge everyone who uses Chelation to please think long and hard about it. Unproven science is frequently deadly science. I’m sure I’ll have something more passionate to say on the issue at some point but right now all I can feel is pity for a dead little autistic child.