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.
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
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).
Left Brain Right Brain 
I’ve always felt like some parents refuse to accept the fact that it might not be some evil, untoward force (“food additives”, “heavy metal poisoning!”, “vaccine components!”) that caused their child’s development issues. It might just, well, be what it is.
I think the worst thing for a lot of parents is a combination of two ideas.
First is the truly horrendous idea that you as a parent may have done something to hurt your child. Its impossible for anyone _not_ to react to that possibility in some way.
Secondly is the total absence of knowledge (other than the grapevine variety) regarding autism before you recieve your kids diagnosis. Autism, along with most cognitive disabilities, is not a very popular cause. The general population are scared and wary of what they think of as ‘mental handicap’.
As long as we have this ignorance in our culture, this is never really going to change. Parents will feel that they’re descending into a blackhole of knowledge. And as long as we allow those self-styled autism advocates such as Lenny Schafer, DAN! CAN, etc to spout their negativity, ignorance will abound. Its a vicious circle that can only change when enough parents refuse to see their children as problems to be fixed and instead see them as a different type of child to parent.
Kevin, it is not “negative” to want to recover children from autism. By your logic, if we allowed this poisoning to continue and did NOTHING to help them biomedically, the world would be overrun with autistics. Imagine that would be GREAT for the diaper industry. I’m sure special ed teachers and therapists would have a booming business… but the rest of the world would be in trouble.
1 in 6 children have a learning disability in the United States. It wasn’t like that before. The school systems are straining against rising special educaton budgets. It’s out of control.
But you guys seem to think you have all the answers. How about finding a way to care for those older autistics who don’t have wealth, who cannot be recovered because of their age and who have no independence… If you did, maybe the lot of you would be good for SOMETHING!
Kev,
Not to pick nits here, but the primary treatment for both lead and mercury poisoning has been DMSA for nearly thirty years. People who are “spinning” the idea that this poor child had to get EDTA to remove the lead that was “blocking” removal of the mercury know not (or naught) of what they speak. EDTA has no place in 21st century treatment of lead or mercury poisoning.
As for people who argue that autistic children, even those who have “regressive autism” are unable to excrete metals, that has not been shown. The Holmes et al paper that purports to demonstrate this does nothing of the sort (see: http://photoninthedarkness.blogspot.com/2005/07/pefect-example-of-how-not-to-do-study.html). Holmes et al measured low hair mercury in their autistic subjects compared to controls and assumed that it was due to poor excretion…in the hair! What a laugh!
Mercury isn’t actively excreted in hair, it passively diffuses into hair from the blood. This has been documented in dozens of real studies going back to the 1960’s. If you read the Holmes et al study, you can see that they had no data or even citations of other studies to support their outrageous assertion that autistic children are “poor excretors” or mercury (or lead). It appears that they just made that up because it was the only way to sustain their mercury-causes-autism hypothesis in the face of their experimental data.
Erik’s statement that “1 in 6 children have a learning disability in the United States.” is also questionable. Even the USDE data on the subject (which was called into question recently) shows that only 1 in 8 children have an Individual Education Plan – and this includes children with “emotional disturbance”, blindness, deafness and orthopedic disabilities.
Note to Erik: inflating your numbers just leads to people not believing anything you say. Remember the story of the boy who cried wolf?
Prometheus
” …the world would be overrun with autistics.”
Oh, the horror, all those autistics running down the street, corrupting society. Whatever will we do??!!
Sarcasm aside, as a parent of a 5-yo (moderate-severe) autistic son, who is an absolute sweetheart and even in his worst phases is never “hell”, (difficult–YES; hell–NO ) that concept amuses me.
Also I do believe most autistic people become toilet trained. We started potty training late with my son but he is doing much better than I expected. And most of the autistic kids I know his age are completely trained. I don’t think the diaper industry is raking in profits from the increase (if there even is one) of autistic individuals.
Jade, good point about the potty training. Actually, sometimes autistic kids, once they get the idea, are very easy to toilet train because when they get the routine, they get it for good! From my own un-scientific survey, I found that most kids with autism are at least fully day potty trained by kindergarten. This is a little late, but definitely not awful. It used to be that even for NT children the average age of potty training was 2 years. Now, especially for boys, it’s 3 years. My neighbor’s NT child next door was not fully potty trained until closer to 4 years.
BTW, I’m curious if some of the biomedical parents are a little scared of people with mental disabilities? I know of some people who are nervous around people with Downs and other forms of mental retardation or mental illness. It makes them uncomfortable, because they don’t like to be around people who are not like them. I wonder if this doesn’t have some role to play in their thought process. Maybe they’re really uncomfortable around their own children’s unusual behaviors and are very frightened about what other people think of their children (or themselves). Because my husband and I have a definite rebellous streak in us (never much cared about what other people thought of our ideas, life, etc), maybe it’s a little easier for us to accept a certain amount of eccentricity in other people. I’ve found that talking to people, the parents who were popular in school and were always successful have the hardest time dealing with their children’s unusual behavior. This is just my own rambling theory. Talk amongst yourselves…
You know the only real way to settle this dispute for once and for all would be independant trials to see whether there was high amounts of mercury in the bloodstream of people with conditions on the Autistic Spectrum, that were significant enough to play a part.
If no proven link was found between Mercury Poisoning then that would swing the balance firmly against Chelation and would increase the possibility of Autism being genetic.
On the other hand it could show a proven link which would undermine the anti cure movement as it would show that Autism is a “mistake” so to speak, something environmental and not genetic.
High stakes for both factions in this dispute. I wonder if anyone will throw down the gauntlet?
Your posts become ever more bizarre Erik.
Firstly, the percentage of people who get autism at all is less than 1%. How would that be overunning the world exactly?
Secondly your point about being great news for the diaper industry is both incredibly ignorant and incredibly demeaning. You keep on demonstrating over and over again that you have absolutely no real experience of autism at all. You’re so tied up in ‘recovery’ you fail to see the people.
“How about finding a way to care for those older autistics who don’t have wealth, who cannot be recovered because of their age and who have no independence”
How very odd Erik. I thought your side claimed there _were_ no older autistics? I’ll remember to quote you next time I get into that debate.
You like to play fast and loose with the science, childrens lives and the dignity of autistics everywhere. I think the overriding emotion I feel for you is pity. One day your daughter will be exactly what you seem to despise – an adult autistic. How very sad for both you and her that you can’t see that thats better than a dead autistic.
“If no proven link was found between Mercury Poisoning then that would swing the balance firmly against Chelation and would increase the possibility of Autism being genetic.”
In an ideal world you’re absolutely right Leo. Unfortunately you don’t seem aware of the incredible level of denial these guys work under. There’s absolutely zero science to support a causative link and lots to refute it. Their response? We’re all Big Pharma Shills.
A recent study in the UK was filmed by the BBC and showed hard science proving once and for all that MMR does not cause autism. The filmed the study. Its not been shown yet but the BBC say its definitive. So do the scientists involved. Erik’s pals response? It must be flawed. Why? Because it must be. Why? Because it must be (repeat until bored).
You could prove the grass was green and these guys would claim it was blue. No science or study would ever be enough.
Kev,
First let me thank you for your kind words about the efforts Ginger and I are making to move everyone past harsh rhetoric so that each sides of the biomedical issue can listen to the other. Your contributions to that effort have been most welcome.
The tragedy in Pennsylvania induced a visceral reaction in many of us, which has made rationale discourse difficult. The immediate reaction of too many people — and I include myself in that number — has been to start giving opinions about an incident we really don’t know much about, and to start casting blame without evidence. This most recent post of yours poses tough questions to the biomedical movement, but does so in a fair manner. I do not pretend to be a spokesman for anyone but myself, but I would like to address some of your points.
In a perfect world, parents of dysfunctional children (and not every child on the autistic spectrum meets that criterion) could wait for the years it will take to complete clinical studies of biomedical treatments in all their permutations. But many of us worry about the ability of our children to function independently as they grow into adulthood. The comforting statistic that 90% of children are able to speak by the age of nine is somewhat misleading. My understanding of the Lord, Risi and Pickles study on the trajectory of language development paints a somewhat different picture. Admittedly, I have not yet read the original work, having only recently heard the statistic cited, but the outline I have seen quotes the study’s finding that by the age of nine, only 14 to 20% of autistic children can still be termed “nonverbal.†All that means is that the majority can use five or more words on a daily basis. That does not necessarily indicate an ability to use language at an age-appropriate level.
Moreover, while use of language is certainly a major concern, it is not the only concern. We often see a constellation of symptoms in the cognitive and sensory areas that join together to result in dysfunction. (Please note that I am being very careful to differentiate dysfunction in a child on the spectrum from the condition of autism itself.) The commonly reported experience among parents who practice biomedical interventions is that their children were steadily regressing until beginning the intervention, after which they observed steady improvement. Waiting until a child is approaching adolescence before deciding whether he or she will ever function independently is not a choice I would make for my son.
Does that mean we should jump at any potential treatment in the hopes of a “cure?†Only a fool would act so rashly. Like any course of treatment or intervention, potential benefits have to be weighed against real risks. And even the slightest risk requires safeguards. In general, mercury chelation with DMSA and/or DMPS has been performed safely, although continual monitoring and testing is required to ensure that no harm is done. As far as I know, IV-EDTA is not used for mercury chelation, but is sometimes used for lead chelation.
Because many of us view thimerosal as the most pervasive problem leading to dysfunction, we tend to ignore other factors. Many of us, nevertheless, acknowledge that thimerosal is only one piece of the puzzle. Quite often, our kids test high for lead, and that obviously becomes a matter of concern. Many biomedical doctors, therefore, prescribe EDTA even though it is not part of the official DAN! protocol. The reason for using EDTA — which is considered an acceptable treatment for lead poisoning — as opposed to DMSA is that many of our children have fairly severe “gut†reactions to DMSA.
All that being said, if I were to have considered using IV-EDTA prior to the recent tragedy, I would only use it if I had reason to believe that lead was a significant issue and the IV could be administered on an out-patient basis at a hospital. The whole idea of introducing a substance intravenously is to introduce it at greater concentrations than can be accomplished orally or transdermally. That implies a risk of an anaphylactic reaction, which can best be controlled in a hospital setting. Today, of course, I would withhold any consideration of EDTA until a determination is reached as to what happened to Abubakar Nadama. Whether the death of this young man was due to an anaphylactic reaction, to the calcium problem “Prometheus†mentions, or to some other yet-to-be-mentioned reason, remains to be seen. The ultimate determination will obviously bear on whether EDTA should continue to be an option at all and, if so, under what circumstances.
I agree with you that we in the biomedical community should not be pointing fingers at anyone right now. If we really want to claim Abubakar as our own, we must also take ownership of his death. We must actively seek answers no matter where they may lead, and we must be willing to accept whatever blame belongs with us. But don’t assign that blame until we know what happened.
In that same vein, I feel it necessary to respond to your mention of Dr. Usman. As is true of the medical profession in general, “quacks†and “hustlers†are likely to be found in the biomedical practice. If such charlatans exist, Anju Usman is not one of them. She is one of the most compassionate physicians one could hope to find in any field. Her command of biochemistry makes her uniquely qualified to help develop and implement effective biomedical interventions. Her name has been bandied about since the Pennsylvania tragedy, and she is certainly one of the most prominent practitioners who use EDTA in various forms. But despite rumors of a connection between Dr. Usman and the Nadama family, I have heard nothing concrete. And even if she consulted with the family at one time or another, no rumor I have heard can explain how Dr. Usman could be directly involved in a death occurring approximately 500 miles away from her office.
I know I cannot change any minds here, but I hope I have made it a little more understandable why many of us opt for biomedical interventions. Raising children — whether neurotypical or on the spectrum — requires a constant balancing of benefits and risks. I would not place my child in harm’s way if the risk was more than negligible. Most of us are pretty conscientious about our parenting.
By the way, Kev, despite my belief in a connection between timerosal exposure and the development of dysfunction that some label autism, I agree that scientific evidence shows the natural color of most grass to be green. I also freely acknowledge that you are not a Big Pharma shill.
“I agree with you that we in the biomedical community should not be pointing fingers at anyone right now. If we really want to claim Abubakar as our own, we must also take ownership of his death. We must actively seek answers no matter where they may lead, and we must be willing to accept whatever blame belongs with us. But don’t assign that blame until we know what happened.”
With all due respect sir I think no faction should “take ownership” of this person and rather we should let him rest in peace. I mean take a good long and hard look what happened with the case of Terri Schiavo being claimed by both sides and adding fuel to the flames of culture wars in the US. I did and that case almost inspired me to write a rap called “Extremist Fever”. This case if it is taken by one side could cause a circus which shouldn’t be necessary if we want to keep this dispute free from rhetoric as possible.
Fombonne et al presented a possibly relevant study at IMFAR this year. I didn’t see this presentation, so I don’t know how their complete data set panned out.
The study is:
S5.4 GENETICS, ENVIRONMENT, NUTRITION
EXPLORING AUTISM IN CHILDREN: THE GENE-A STUDY. E. Fombonne, R. Zakarian, P. Assouad, M. Fischel, E. Golan and E. Dewailly. Department of Psychiatry, Montreal Children’s Hospital.
Here is an excerpt from the abstract:
“Data is collected on 71 autistic children and their mothers (mean age=3.7 years; age range=1.6 years to 6.8 years) and 30 controls. 88.7%(n=63) PDD children are males and 11.3%(n=8) are females. Preliminary analyses of 32 autistic children and 15 controls indicate no between-group difference in mercury levels on both the blood and hair of children and their mothers. Immunoglobulin A, M, and G were also similar in both groups of children. Nutrient analyses showed that some PDD children had less than optimal intake of essential amino acids, especially those on a gluten-free, casein-free diet. Results will be
presented on a more complete sample.”
Here is an article that more fully describes this study http://www.medicalpost.com/mpcontent/article.jsp?content=20041108_180936_4988 .
Excerpt:
—————————————————————————————————–
Preliminary results on the first data set from 32 PDD children and 15 controls show that other than one child with PDD who, with his mother, stands out as having extremely high mercury levels, no significant differences have been found between the two groups.
The child with the very high mercury levels, who also had high levels of lead, was however no different from all the other PDD children in his behaviour. Neither did he have more cognitive deficits, added Dr. Fombonne.
“If we find no difference, and no correlation between levels of mercury and the PDD children’s behaviour—which is what we find so far—this will go a long way to rule out the mercury hypothesis.”
——————————————————————————————————
The funding for this study comes from Fonds de la recherche en santé du Québec (FRSQ-MSSS). That is, it is funded by the government.
Leo,
I agree that we should not turn the child into a tool to be used for presenting arguments. But we, in the biomedical community, feel a natural kinship because of the approach his family was taking. By claiming ownership of his death, I merely meant that we need to earn that kinship by asking ourselves some difficult questions, even if they lead to answers we don’t like.
Dear Angry Mom,
To make it worse, the little boy’s father is a doctor.
I am also angry.
But the sad thing is that more than likely nothing will happen to the purveyers of chelation, supplements, and other worthless treatments.
Even though Hugh Fudenburg has lost his license to prarctice medicine he still in business treating autistics, http://briandeer.com/wakefield/hugh-fudenberg.htm .
Oh, great… Kirby has weighed in with a fact-free response:
http://www.huffingtonpost.com/david-kirby/autism-and-chelation-whe_b_6286.html
http://www.post-gazette.com/pg/05239/561077.stm
The parent’s comment through their lawyer.
And on huffingtonpost, Kirby steps in to say: “Dont’ blame me!”
Like anyone cares what he thinks. He’s a ridiculous little travel and lifestyle reporter. He worked with gay rights and AIDS issues some time ago, and apparently was involved in Act Up.
http://www.jayblotcher.com
It looks like maybe his publisher has dumped him from the list of authors whose books need to be promoted, he hired his friend Jay Blotcher to be his new publicist, he says.
He calls the family “immigrants”
The father made it clear his wife only came to the US to get treatment for their son, not to live there.
Maybe the father didn’t know exactly what the treatment was, but he should have.
Without Fudenburg, who obviously lost it some time ago, you don’t have a Wakefield, without Wakefiled you don’t have a Bradstreet, without Bradstreet and Wakefield you don’t have Lyn Redwood, without Lyn Redwood you don’t have SAFE MINDS, without SAFE MINDS you don’t have Kirby and his book.
It’s a tiny, but wealthy are loud mouthed and ignorant group of people who have brought this death about.
It’s too bad Abubakar’s parents weren’t poor, they would have stayed where they were, in Nigeria or England and they wouldn’t have been suckered by the Ear Nose Throat doc from Pennsylvania into allowing their child to be malpracticed upon.
The UK had Brian Deer to go after Wakefield and put a stop to him, but we have his evil opposite number, David Kirby who promotes the autism epidemic and chelation as a cure for autism.
“I merely meant that we need to earn that kinship by asking ourselves some difficult questions, even if they lead to answers we don’t like.”
Indeed. Biomed stands at a crossroads as never before. Do we continue to pour resources after cause/cure – an action thats only _definite_ result is the belittling of autism – or do we try and move past this burning need and concentrate on helping where its needed in ways that are encouraging and empowering?
The Risi stuff I won’t get into a ‘battle of stats’ with you as thats just dull but the point I want to make is referenced by your observation that:
“Waiting until a child is approaching adolescence before deciding whether he or she will ever function independently is not a choice I would make for my son.”
The point about the Risi quote and how it ties into what you wrote above is that, this is one frozen moment in time – development has gone on before, during and will continue after that point. There _are_ some aspects of autism that will never go but these are negligible things such as stimming. Communicational development is delayed yes, but not halted. I think you’d be hard pressed to fnd any autistic who couldn’t communicate at all on any level.
“I agree that scientific evidence shows the natural color of most grass to be green”
Thanks for making me laugh for the first time in a day or so ;o)
From the link ‘still angry’ provided:
“However, Botta said, the couple is in the midst of establishing a trust fund “to advance the research into the cause of autism and to assist others in need of care.””
And so it goes round and round. How depressingly predictable.
Yeah, If the family meant, establish a fund to provide safe jobs and housing for autistic people, that would be great.
But most likely they want a cure to make autistic kids into normal kids.
There son was happy, they didn’t describe him doubled over in pain. It seems like he as one like my child who would grow up to be innoncent and love everyone. Such people need special care, but they are a blessing, not a curse.
Other autistics, are keen minded and demand fairness for all, like Amanda Baggs and Michelle Dawson and Frank Klein, and many others. They might not be a cuddly as the first kind, like my child, but they are a blessing to the world, too.
No matter what he was like, he could have been fine if the world didn’t despise weakness and difference as it frequently does.
I’m sure the family thought he would be safer in the long run after they died (years from now) and they couldn’t care for him any more, if they could make him normal, but that was misguided thinking.
The thing is to try to plan for a way for the innocents to be safe after the parents are gone, the same thing I must plan for for my child.
One thing that must be done now is to change people’s level of knowledge about autism, that will tend to make the children safer, also introduce them to people who might like them and care for them if you the parent might die suddenly.
Those people are rare, but I have found some.
The dead boy’s mother has said she doesn’t blame the therapy for the boy’s death, so obviously she has no idea that it could have been harmful. Basically, it seems that someone told them “this will cure your son” and they believed it, came to the United States, and let someone pump their child full of something which, in all likelyhood, killed him.
Oh, well, now they won’t have to live with “a parent’s worst nightmare” and their son is saved from “the hell of autism” so I guess that’ s all that matters. 😦
It’s very sad, sickeningly so, that mercenaries are able to sway the thoughts and feelings of individuals to such an extent that something like this can happen. What’s so different between a child with autism and one without? We’re all born with the inability to effectively communicate. We all develop those skills in our own ways and our own time, and those around us have to redevelop them in order to be able to communicate in return. My only real life experience of this is via my sister’s step son. He was born with Asperger’s 21 years ago. In the time since then he’s grown into a very amiable young man with intense interest in a wide range of subjects, most of which he has no trouble expressing his delight in if you’re willing to pay attention. He has friends that he goes out with, that share his interests, and that he trusts. He hasn’t become any parent’s worst nightmare. He’s become an adult that’s as unique in his outlook on life as any other individual.
You said I got this way without biomed cures. That’s only partly accurate. I have been subjected to many. But I regard myself as being the way I am (in any particularly good way anyway) in spite of biomed cures. Not because of them. Because of them, I got very sick for awhile.
I grew up in the area where Abubakar was treated and died. I know doctors and parents of autistic children in the area. I even worked one summer for the newspaper that’s the source of many of the reports. The story has more of a personal impact the more I learn. I need to let some time pass before drawing any conclusions about what happened. Maybe he did have lead poisoning. Maybe the heart attack was brought on by multiple factors. Maybe we’ll learn that his death was a direct result of the chelation. We just don’t know yet.
While I haven’t chosen to (and have no intentions to) pursue this type of treatment, it still seems to me that there may be some relationship between autism and metals. Maybe it’s as benign as a similarity of some symptoms of autism and mercury poisoning. It would also be plausible to find out that heavy metals are processed by different people in different ways, based on genetics. I’m certainly ruling out a cause / effect relationship, but it seems that there is more for us to learn.
It continues to be obvious that we know so very little about the roots of autism and effective ways to help. I believe there’s so much controversy because there is still not enough science. There are studies to support various theories about causes, treatments, interventions, learning strategies, etc. But the number of studies are few enough that it’s all too easy to find flaws and limitations with almost all of them. There’s either too few subjects, too few controls, or another limitation that either prevents definitive conclusions or enables someone to challenge the study’s value. I’ll save my comments on the lack of research funding for a future rant (I mean post) on my own blog.
“Maybe he did have lead poisoning. ”
If he did, he would have received treatment from the British NHS, possibly even in the hospital his father works at. There would have been absolutely no reason to take him to another country to be treated. Especially since there are better chelators for lead available than EDTA.
There is a massive, a huge, a monstous mountain of information about autism on pubmed alone, You could fill a room with just papers on autism done in the last 3 years. Maybe not a huge room, but it would take you a long time to read it all. In that massive amount of information there is a body of information that is rarely contraverted and there is information that say has 10 studies to back it up and 20 studies that say otherwise.
But there is almost none that would begin to hint at mercury being a cause of autism.
Why? Because all the other information tends to point firmly away from it.
A chelationist that sells EDTA, says that he sold disodium EDTA to Dr. Kerry, and only that kind. He says that it’s not safe to use that kind on a child in “IV push”, even if the person was stupid enough to try to convert it to calcium or magnesium EDTA by mixing some Ca or Mg in the syringe with the disodium EDTA.
That might be a lie, but why would the well known seller of EDTA lie about the kind he sold to Kerry, when Kerry could easily prove otherwise?
The kind the EDTA seller sold him can easily kill a child.
Saying that they don’t know what killed him is like saying they found his body in the middle of a road with tire tracks on him but they aren’t sure if he was hit by a car and died.
Well, sure a 5 year old could be out in the middle of the road and die of a heart attack or have a stroke and die and then a car could run over the body…. but that’s not really likely now is it?
The news reports said he was being chelated with EDTA when he died.
No, we don’t know what killed him, but you don’t know if I am a cat, either, it’s just a pretty safe bet that I’m not a cat.
There is no reason to believe that Abubakar was so full of lead that he needed chelating, and there is no reason that if he was that he would EVER, EVER needed to be chelated with ANY form of EDTA. Using EDTA on a legitmately lead poisoned child is malpractice as it doesn’t work and DMSA does work, and it’s highly unlikely that the boy was lead poisoned at all.
I’m not in charge of the medical licensing in PA, but I hope whoever is will have suspended this man’s license to practice by now. I also hope that if he was as sloppy as it LOOKS like he was, that he is arrested and charged with negilgent homocide.
http://oracknows.blogspot.com/2005/08/sadly-it-was-only-matter-of-time.html
Read what Orac says about it from a surgeon’s point of view.
As a semi-related aside (posted this at Prometheus’ blog as well) – Generation Rescue made ans “official” statement – as opposed to the unofficial statement made on the EOH board by Handley a few days ago:
http://www.generationrescue.org/tariq.html
Nice to see everyone’s getting in lockstep with the “nobody’s funding our research” mantra. Took them a few days, but they found their soundbite.
Oh, and notice the delicious irony of Generation Rescue saying that 10,000 children have been treated by over 400 doctors using chelation therapy, yet at the same time lamenting the lack of governmental interest in the subject.
10,000 children would make a pretty powerful clinical study, wouldn’t it? Yet all GR has to promote is their testimonials? After all this time?
Did you know Cave, Holmes, and Bradstreet have been treating kids with chelation for a decade now?
10,000 kids. And they couldn’t be bothered to do put out one peer-reviewed paper on the use of chelation for autism.
So, if we take the numbers provided by “Generation Rescue” (10,000 children treated with “chelation”) and one death, that gives us:
100 deaths per million treated.
The smallpox vaccine, which had one of the highest morbidity and mortality rates of modern vaccines, had a fatality rate of:
3.5 deaths per million treated.
So, which is safer – vaccines or chelation?
Prometheus.