Acceptance. It is a word that some use to describe their relationship with the reality of their children, or their own, autism. We accept the fact our daughter is autistic.
For people who claim to ‘fight autism’ this acceptance is a weak passivity. An act of giving in.
This, of course, is rubbish. Those who have accepted the reality of their own or their children’s autism know that the work starts right there. We do not attempt to carry on deluding ourselves and using quack treatments such as chelation etc as shields against the reality of who our kids really are.
Parents like Brad Handley of Generation Rescue claim at one point in time that:
“autism is a misdiagnosis for mercury poisoning…..The whole notion of autism is mythical. It didn’t exist before thimerosal in vaccines”
and then later say:
The argument is being spun by focusing exclusively on a single ingredient used in vaccines, Thimerosal (which is made from mercury), while forgetting to mention a number of key points about the differences between the vaccine schedule of 20 years ago and today….Thimerosal is only one of the possible ways that the vaccine schedule could be the primary trigger behind the autism epidemic…
are simply in denial. When their first belief is established to be untrue, they simply move on to another belief.
From the videos I posted a link to above, Brad is asked:
Q: This therapy (chelation) is it something he (Jamie) will be on the rest of his life?
Brad’s answer is:
A: Absolutely not. Its at maximum a two year process. Probably less.
As of next month, Jamie Handley will have been undergoing various treatments for three years. His story is not, as far as I can tell, listed anywhere as a ‘recovery’ story. He is still autistic.
Brad has made no effort to go back onto TV and explain this inconsistency. This is because he cannot. It is not explainable. I will be honest. Brad and I regularly exchange verbal barbs but I often feel sorry for the Handley’s. Because of their inability to accept the reality of their sons autism they have been unable to move on. They have instead – as I think is the case with a lot of the autism/vaccine parents – sublimated their failure to ‘cure/recover’ their kids in a proxy-fight with the ND’s, the CDC, the FDA – whatever.
I read a lot of blogs from the likes of Wade, Ginger, Kim Stagliano etc and whilst I often read about their anger and I often read about their love for their kids, I never ever read about them being happy. Do they love their kids? Of course they do. Do they enjoy their time with their autistic kids? I don’t know. I don’t think so.
There is a curious emphasis in a lot of these blog posts. Take Kim Stagliano’s most infamous blog entry – The Crappy Life of the Autism Mom – in which she says:
Recovering your kids doesn’t mean denying their value as people. To the contrary, it means we are willing to devote our lives, our savings, our sanity to their improved health, development and well being.
The jarring difference between stating that she is not denying their value and describing her life as their mum as crappy never occurs to her. It is also sad beyond belief that Stagliano feels that the measure of a persons value is the suffering of their parents.
Of course, the truth is that any decent parent will devote their lives, savings and sanity to their kids well being. That is not a situation that is the sole province of autism or even disability. Just parenting. However, I think that as well as lives, money and sanity, a parent should also invest respect and reality. Sublimating a continued tilting at the windmill of your child’s condition into an increasingly dirty and violent fight against a giant conspiracy is sad. Not sad in a sneering way but genuinely sad. It must be so miserable to be simply unable to accept the reality of the nature of your child.
This inability manifests itself in some strange ways. There have been a spate of articles fairly recently which examine the possibility that older parents are more likely to have autistic kids, or that autism might be due to a ‘corrupted’ (in the medical sense) gene. The outbursts these research papers have generated on EoH are amazing:
You forgot to mention that we’re damn old TESTOSTERONE-laden refrigerator mutant moms……………Here’s more from Autism Speaks funded research. So now the theory is it’s you damn old moms with your refrigerator mutant genes that causes autism. You are such horrible people. Tsk-tsk. Clearly, you aren’t feeling guilty enough, no matter how misplaced.
Any hypothesis which mentions or refers to parents is given equally short shrift. It doesn’t take much to work out why. Even when there is no hint of ‘blame’ (as in dear old Bettlehiem) to parents, any intimation that the genetic/physical make up of parents might have something to do with causes is pounced on and denounced in increasingly hysterical overtones.
Personally I don’t see the issue. Does it matter? No, not to me. But it seems to these parents that the idea that they might carry some responsibility for the fact their kids are autistic fills them with an utter horror. Even to the point that they have to delude themselves.
Take the cases of Erik Nanstiel’s daughter and John Best’s son. Here are two fathers who regularly sing the praises of their children’s doctors (the Geier’s and Andy Cutler respectively) and yet…
When we look back at everything we pay out of pocket… and for everything we pay as a co-pay… it’s several THOUSAND a year.
Why are we still doing biomed after six long years? Because we’ve seen our daughter go from failing-to-thrive to a pretty healthy kid. From a kid who couldn’t balance her copper and zinc… who had lead and mercury through the roof, with very little glutathione… who had constant diarrhea and wouldn’t sleep at night… and terrible eyesight…
to a kid with darn-near normal mineral levels, whose heavy metals have been more than half depleted, is thriving on a good nutritional program… and whose glutathione levels are now higher than daddy’s… is sleeping wonderfully through the night and has seen a 60% improvement in her eyeglass prescription.
She’s also nearly lost her tactile-defensiveness, loves attention (much more than before), stims a LOT less… is beginning to potty train and needs less “prompting” from us for life skills that she’s learning (like using silverware at meal time and dressing/undressing, etc.)
She is still considered low-functioning…
Like Brad and I, Erik and I have also had our fair share of verbal jousts but when I read this I want to weep. How can a man who so obviously adores his daughter fail to see that which is right in front of his face? They’ve been doing biomed for six years and his daughter is still low functioning (Erik’s words). The improvements he describes have little to no bearing on autism.
I waste no pity on John Best but once again, his denial is as plain as the autistic son in front of him:
I’ve done 55 rounds of chelation safely following the advice of Andy Cutler. My son keeps improving. I advise everyone that contacts me through GR to read what Cutler has to say and consider his protocol over what some DAN doc’s say. He has answered all of my questions at no cost and this chelation for a severely autistic child is working.
Whereas today, John made a post on EoH that stated:
In the time it took me to type my last reply, my son smeared feces all over himself and his room again. I’ve long since lost track of how many hundreds of times this has happened.
By the standards of Kim Stagliano – smearing (A Crappy Life remember) equals not cured. How exactly is the chelation working for John’s son? Or is it merely a panacea for the denial that ails his dad?
Left Brain Right Brain 
Recently I was on a course where they discussed the various stages of change. These are
Denial,
Anger & Resistance,
Exploration & Acceptance and
Commitment.
While this course was aimed at a business environment, I could not help but think of the stages in accepting an autism diagnosis for your child. Many parents stay in Denial for a long time. I even know people who believe that their child is a “Natural Late Talker” or “An Einstein Syndrome child”, which the child is clearly autistic. Those parents probably never make it through to acceptance. I think the autism-vaccine parents are in the second stage. They are full of anger and resistance, and lash out at anyone who counters their world view. Exploration and Acceptance is where one is asking for information, learning and beginning to see the positives. The final stage is Commitment, in which the situation is the “new normal”, and the person is engaged in the process. People can move along this trajectory both forward and backwards. So, the curbie parents are in Anger & Resistance, but wanting to move back to Denial. “My child isn’t really autistic, just mercury poisoned.” they cry.
Kev, I am sure that many parents come to your blog in Exploration mode. Entries like this might help them move past acceptance into Commitment. Thank you for your work.
And BTW, Andy Cutler is a PhD in chemistry, not a medical doctor. Even worse that John Best relies on him for medical advice.
We did spend some time, in the early days after our boy’s diagnosis, poking around in the “biomed” world. I’d got a book from my sister about biomed, by Karyn Seroussi, and I was persuaded by the testimonial of this one parent. My mother-in-law, a nutritionist, kind of took over at that point and began ordering everything we would need for the GF/CF diet and eventually convinced us to try B-12 injections and a few other vitamins.
Well, the whole thing was a flop, and seeing your post here today reminds me of something I sent to a parent who asked me my opinion on biomed. Here’s what I wrote:
>I am more and more of the opinion that there are a hundred snake-oil salesmen out there, looking to take advantage of the desperation of people in our shoes. Maybe some of these “cures” will work, but at what cost? At subjecting our children to a barrage of experiments? To make them more “normal”? I’m to the point now where I see the purveyors of these therapies as car salesmen, trying to sell us what they have, regardless of how useful it will be to us.
I want my son to speak, more than anything else in the world, that is what I cross my fingers and hope for. Every shooting star, every coin tossed into a fountain, every prayer. Every childish method you can think of where you permitted yourself to wish for something from the deepest recesses of your psyche, I have employed to wish my son could communicate. But all that wishing mounts up to about the same result as the various “alternative” therapies we have tried. But it costs a lot less.
To Brad’s credit, he’s adjusted his beliefs a little in light of reality. He’s not stuck on the same old belief like a broken record. Contrast with John Best, who continues to insist autism was invented by Eli Lilly in 1931.
It’s always interesting to hear of Erik’s discovery that chelation can cure myopia. That’s truly… outstanding.
Great post, BTW.
“The improvements he describes have little to no bearing on autism.”
Perhaps not. But the improvements he listed do have everything to do with raising the general quality of life for the child.
…Perhaps not. But the improvements he listed do have everything to do with raising the general quality of life for the child.
Indeed. But how do you explain the same improvements over time with my son, when we never did any “biomed” interventions?
Maturation, modeling, parenting.
Lather, rinse, repeat.
Joe
But the improvements he listed do have everything to do with raising the general quality of life for the child.
To me that’s like saying that when a (normal) baby learns to walk, the significance of that event is that it raises the general quality of life of the baby. It might, but to think of it in those terms is a matter of perspective.
And of course, there’s no reason to believe that anything Brad or John or Erik are doing has an active effect beyond that of a placebo. And if you do believe that, do you also believe that the developmental progress of Kev’s daughter or Jypsy’s son, for example, are caused by neurodiversity?
_”Perhaps not. But the improvements he listed do have everything to do with raising the general quality of life for the child.”_
Well, yeah….and…?
Raising the general quality of life is great – if they did that. But that wasn’t the claim made. The claim was that they would cure autism.
The claims Erik makes are almost exactly the same as the achievements my daughter has made. She’s had no chelation, no Lupron etc etc. Why were these necessary treatments beyond placating Erik that they were ‘doing something’?
My current fav is Harold Doherty’s assumption that he is more “grounded” because he is seeking ABA services for his son. HE, and not the rest of us, are the heros of this autism advocacy because ABA is “the only way….”
It’s all rubbish. He is not more “grounded” than other parents. That is not the issue. It is a sad angle to take in order to discredit those who accept their children and do everything to make every opportunity possible, without destroying their children’s identity or self-esteem, or the well-being and dignity of other autistics.
Acceptence is an active process of study and most importantly, self reflection as a parent — of deep existing prejudice, of our obligation to others. It is active listening to what autistics have to say about what all of this means to them. It is then putting the lessons we learn from those people, and from our very own children, into practise — our everyday lives and philosophy. We live in a society that values diversity. That notion or concept MUST extend to our disabled communities.
I accept my son is autistic, that does not mean I don’t help him, but rather that I realise he has a different perspective on things, a different way of learning and I compromise and find ways of helping him with the things that he needs help with, not the things that just make him different. Eg I am helping him to learn to ask for things, to let people know if he’s in pain or if he needs a drink. I don’t see the need to feel despondant because he still thinks he’s hidden from everyone if he hides behind his hands, rather than understanding how to play hide and seek. A friend on another forum has a severely autistic ten year old. She is trying to help her have less sensitive skin and to cope with wearing clothes, but she doesn’t stop her watching Teletubbies.
I don’t have to fight autism. The septuagenarian rockstars on VH1 will do that for me.
Could you take someone that calls me weak or passive very seriously?
We are in our 5th day of rain down here at the beach, on our vacation.
Everyday, Charlie has asked to swim in the ocean and in we have gone—it’s been a fabulous time, and we’ve all be, indeed, happy—one happy autism family.
This is what acceptance is about to me: Gray days, rainy days; autism, disability, difficult times—-none of these cancel out happiness.
When I learned truly to accept my son as my the person he so truly is, I was best able to help him.
Broken Link said “And BTW, Andy Cutler is a PhD in chemistry, not a medical doctor. Even worse that John Best relies on him for medical advice.”
Even worse is that Cutler is a chemical ENGINEER!
From his CV here: http://herballure.com/Authors/AndrewCutler/CurriculumVita.html it says…
Begin Quote
Proprietor, Minerva Laboratories, 1984 to the present.
Duties: Provide consulting, expert technical advice, literature review and evaluation, and on site services to meet the chemical, properties and materials science needs of engineers and nonchemical scientists for process and product development and improvement.
Assistant Research Professor (not tenure track), University of Arizona, 1989-1994.
Duties: Performed research on space resource utilization and related topics. Taught graduate chemical engineering courses in Space Manufacturing. Conducted research with lunar samples.
Editor, Space Power: Resources, Manufacturing and Development, 1988-1993.
Principal Scientist, Energy Science Laboratories, 1986-1988.
Duties: Performed and obtained support for research in various areas of aerospace technology. Provided technical support for a wide variety of projects when chemical needs arose.
Postgraduate Research Chemist, University of California at San Diego, 1983-1986.
End Quote
None of his actual work experience is anything even near biological systems. If you look at his published engineering papers, they have nothing to do with biochemistry. They are in journals like “Industrial and Engineering Chemistry Research”, “Carbon” and the “Journal of Electrochemical Society”.
Getting medical toxicology advice from Cutler is like going to a structures engineer for a broken leg or to a hydraulics engineer for a heart condition or an HVAC engineer for respitory problems or even those very important civil engineers responsible for providing your community with clean water and waste water disposal systems for gastrointestinal problems.
I think you have the right idea that you need to accept your children for who they are. But it seems ironic to me that you use a post with the word acceptance in the title to criticize another parent with an autistic child.
“Raising the general quality of life is great – if they did that. But that wasn’t the claim made. The claim was that they would cure autism.”
And your reason for attempting to rub his nose it the fact that he hasn’t met his goals would be? To prove you were right and he was wrong?
“Why were these necessary treatments beyond placating Erik that they were ‘doing something’?”
“Indeed. But how do you explain the same improvements over time with my son, when we never did any “biomed†interventions?”
I don’t think anyone can explain why this is (at least not until we know what autism is). Every child with autism is different (even identical twins). And I think that what works for one child may or may not work for another.
So while we all work on accepting our children (autistic as well as NT) for who and what they are, how about working on accepting that other parents think that another way is the right way for their children.
_”But it seems ironic to me that you use a post with the word acceptance in the title to criticize another parent with an autistic child.”_
Why? These are parents who write on blogs about their experiences or who own and operate high profile websites dedicated to the promotion of the idea that autism can be cured and was caused by vaccines. I think that they, like any other person who blogs about absolutism rooted in denial needs to be held accountable for their words.
_”And your reason for attempting to rub his nose it the fact that he hasn’t met his goals would be? To prove you were right and he was wrong?”_
Hardly. But those of us who blog about treatments kids receive need to have our words and actions examined for their veracity. Do you think that all those sites that claim to list recovered kids are rubbing my nose in things? No. we’re making claims.
_”how about working on accepting that other parents think that another way is the right way for their children.”_
No, sorry. Not whilst those parents think things that promote killing treatments or treatments that hospitalise kids based on no evidence. Wrapping onesself up in a nice comforting blanket of denial does no one any good.
“I read a lot of blogs from the likes of Wade, Ginger, Kim Stagliano etc and whilst I often read about their anger and I often read about their love for their kids, I never ever read about them being happy. Do they love their kids? Of course they do. Do they enjoy their time with their autistic kids? I don’t know. I don’t think so.”
On that you are wrong. My blogging tends to focus on issues rather than describing our daily lives. I have no problem with those who do focus on what their kids did on a given day; it’s just not what I have chosen to do. How that translates as my enjoying life with my autistic son is beyond me. It is an absurd assumption for you to make.
Life with a child on the spectrum is challenging and sometimes frustrating, to be sure, but it remains enjoyable. We spend time together, and do things that any parent and child would do: go to the library, go fishing, go to the local swimming pool, go to the movies, play games, etc. If anything, I take more joy in those times than the average parent would, because I get to witness the constantly increasing joy my son takes in those activities as his condition improves.
Okay, gang, get your flamethrowers ready. Wanting to improve the quality of life for my son is not in any way inconsistent with loving and accepting my child for who he is at any given moment. I believe that is the attitude of most of the “curebie” parents I know personally.
Now, if you’ll excuse me, I’m going to climb back into my lurking hole.
I know that acceptance is much less stressful than denial. I wonder if those 80% divorce stats come from families spending thousands per year in search of removing their child’s diagnosis.
There is a pretty cool video on YouTube called “life [Our Autism Acceptance]” by ‘fracturedpersona’ that illustrates that quality of life is largely influenced by parental state of mind.
“As of next month, Jamie Handley will have been undergoing various treatments for three years. His story is not, as far as I can tell, listed anywhere as a ‘recovery’ story. He is still autistic.”
I figured I could fix autism in less than a year when I plunged in to the whole “Biomed” thing. At some point he’ll be forced to admit, in spite of his valiant efforts, that he was unable to alter his son’s course of development with Yasko’s RNA drops, Buttar’s chelation cream, or Stan Kurtz’s B12 sinus relief.
It would be interesting to calculate the rate of recovery for the children of the autism pioneers. You know, Bradstreet, Blaxill, Holmes, Bernard, Redwood, Adams, McCandless, etc.
Can we get a phone survey going on this?
And I think that what works for one child may or may not work for another.
MJ – First let’s see the evidence that stuff “works”. Would you say that Secretin “works” for “some” children given all the personal accounts that say it works?
I’ve come to believe that anecdotes of purported autism treatment effects are worse than worthless, because they cause people to waste time and get ideas about autism which just aren’t true.
Somewhat on topic, let me recommend The Enemies of Reason, Part 2, via Orac.
It would be interesting to calculate the rate of recovery for the children of the autism pioneers. You know, Bradstreet, Blaxill, Holmes, Bernard, Redwood, Adams, McCandless, etc.
Oh, but that’s not fair NotMercury. Don’t you know that their kids are very special non-reponders?
“Hardly. But those of us who blog about treatments kids receive need to have our words and actions examined for their veracity. ”
I agree one hundred percent. But there is a fine line between having a discussion about ideas and attacking the person.
“No, sorry. Not whilst those parents think things that promote killing treatments or treatments that hospitalise kids based on no evidence”
Please. Chelation isn’t too be taken lightly and any death is serious. However, it isn’t the death trap that it is made out to be. I know of two deaths in the past five years or so from chelation related to autism. How many kids do you think were chelated last year alone? A higher number of children are hurt or killed by vaccines every year. And on a percentage basis, more children are hurt or killed in car accidents. And in this case you are referencing, the CDC found medical malpractice was the cause, not chelation.
“MJ – First let’s see the evidence that stuff “worksâ€. Would you say that Secretin “works†for “some†children given all the personal accounts that say it works?”
No I wouldn’t. But that is because I haven’t looked into had is being said about nor have I talked to any people who tried it nor have I tried it personally. So I would not be qualified to have an opinion.
If you asked me about GFCF diet, I would tell you it does “work” (at least for my children) because of my own experience. And then again, if you talked to my neighbors who have an autistic child, they would tell you the GFCF diet didn’t work for them.
So I think the question of why some things work for some people and not others is an interesting one. And unlike you Joseph, I don’t start from the assumption that everyone is mistaken when they relate stories about what worked for them.
Wow, some powerful discussion going on at this blog.
How many kids do you think were chelated last year alone
A small number of kids with real heavy metal poisoning and a lot of kids with autism who never should have been chelated.
Matt
Wade, I agree that wanting to improve the quality of life for one’s child is not in any way inconsistent with loving and accepting the child for who he or she is at any given moment. I’d go farther and say that accepting the child for who he or she is in itself improves the child’s quality of life.
Why do you think the flamethrowers would come out when you say you want to improve the quality of your child’s life? Isn’t that what all we parents want?
Wade I was going to say exactly the same as Anne but she’s already said it, so I won’t.
MJ – these treatments are performed by people on people, its literally impossible to discuss them without discussing the people who perform them. As I disagree with them, my stance is going to oppositional.
Chelation is just one aspect of the more extreme end of biomed treatment. There is also Lupron, heavy doses of multivits (which have hospitalised autistic kids) and various other untried treatments. Lets not beat around the bush here – these kids are guinea pigs. The love of their parents is not in question. However, they have made the decision to use these treatments, in my opinion, based on a denial of the reality of their children’s condition.
I watched that video “enemies of reason” that Joseph linked to. It discussed the problem of people turning to alternative medicine that has no basis in reason at all (homeophathy, applied kinesiology, ayurveda and others). Prof. Dawkins said that part of the attraction to alternative “medicine” is that the practitioners tend to spend a lot of time with patients and make them feel understood which enhances the placebo effect of anything. I think he should have added that another attraction to such “therapies” is that for many it takes almost no training or not training at all to begin to practice them and get paid for practicing them. He pointed out that anyone can be a homeopathic doctor since the treatments are all water or innactive pills. In the case of the DAN! parents and the followers of Andy Cutler and Buttar, many of them get practically stoned on how smart they think they are. In the 1970’s and before, doctors were held in very high esteem. Well, now anyone can be as smart as or even much smarter than any old doctor just by reading some web pages. The egotism on some of the DAN! parent boards is so obvious. People wouldn’t know a T-cell if one walked up and bit them talk about how their children have this or that problem with their dysregulated immune system and all they need to do is _____ . Fill in the blank with whatever is an up and coming cure.
People who have **no clue** what a virus is or how it works are now world class self-designated experts on viruses and vaccines. They love to say things like, “my 5 year old is smarter than any doctor!” So it’s not just about not being able to afford straight medical care or being afraid of what big pharma is doing, alternative medicine is the playgroud of megalomaniacal narcissists, too, and those who are just too big for their britches because they have access to webpages that dumb down or misstate facts about physiology.
There’s also a superior tone that they have that they are smarter than the run of the mill person who merely uses allopathic medicine. They believe that the really smart and cool people all use crystals and iridology to treat sore throats and cancer.
MJ says: “Chelation isn’t too be taken lightly and any death is serious. However, it isn’t the death trap that it is made out to be.”
It’s not the panacea for autism either. You’re missing the point. It’s not that it killed “only” two people. It’s that it shouldn’t have killed anyone because it’s not meant to be used for treating autism (or as a diagnostic tool, for that matter – but that’s another diatribe).
It wasn’t designed nor ever intended to be used the way it is being used to “treat” autism. Plain and simple.
“t’s not the panacea for autism either. You’re missing the point. It’s not that it killed “only†two people. It’s that it shouldn’t have killed anyone because it’s not meant to be used for treating autism”
I understand that point and I don’t necessarily think that that it is a good treatment to use for autism (for me the jury is still out). What I was reacting to was Kev calling it “killing treatments” – that is just a little much hyperbole for me.
“alternative medicine is the playgroud of megalomaniacal narcissists”
You do know that alternative medicine has been around for much, much longer than the internet has been, right? And while alternative medicine (in general and not just limited to the autism world) does attract more than its fair share of quacks there are also very intelligent, educated people doing work that the mainstream doesn’t agree with – hence the alternative designation.
However when you fast forward some number of years, some of these alternative ideas are accepted into the mainstream of medicine. This doesn’t mean that every idea is or that even that majority of them are but it does the calling them all “just too big for their britches because they have access to webpages” is an exaggeration.
For a case in point, consider vitamins in general. When the idea of taking supplements was first introduced it was via alternative medicine. If you asked “mainstream” doctors at the time if taking vitamin C or a multi or anti-oxidants was a good idea they would have laughed at you. Today many doctors would agree that it isn’t a bad idea.
People who have no clue what a virus is or how it works are now world class self-designated experts on viruses and vaccines.
How can you say this? These self-styled experts are warning the world of the dangers of vaccines! I mean, who knew that vaccines had viruses in them! Doesn’t that scare you!
Matt
_”What I was reacting to was Kev calling it “killing treatments†– that is just a little much hyperbole for me.”_
Its a treatment that has killed. The fact – as explained – that it is worth singling out above other treatments that have killed is the fact that this death was utterly unwarranted. This wasn’t a side or adverse reaction. It was the death of a child using a non-indicated treatment in a cavalier manner. To me, its incredible there’s only been one death.
How many rounds of chelation are typically used for a kid who’s truly poisoned by heavy metals (i.e. blood lead levels above 44 migrog/dl – iirc)? I’m guessing they chelate until the blood levels drop to within normal range, but how long does this usually take?
Do you folks think that the doctors that these people are using are insincere? Do you think that they are intentionally defrauding these parents, or do you think that they believe in what they are doing and are sincerely trying to help?
Thanks.
I understand that point and I don’t necessarily think that that [chelation] is a good treatment to use for autism (for me the jury is still out). What I was reacting to was Kev calling it “killing treatments†– that is just a little much hyperbole for me.
There is absolutely no reason to use chelation therapy to treat autism. When used for this purpose, all it achieves is to cause pain and discomfort to the patient; killing is less common, but happens.
If one is going to refer to chelation as a ‘treatment’ for autism, ‘killing treatment’ therefore seems fair enough (it’s a useful way of emphasising that this doesn’t have positive effects). Perhaps ‘inflicting pain, and killing, treatment’ would be a good – if a bit too wordy – alternative, to emphasise the more common effects of this ‘treatment’?
“Its a treatment that has killed.” – Even worse, it’s an unnecessary treatment that has killed unnecessarily.
“How many rounds of chelation are typically used for a kid who’s truly poisoned by heavy metals (i.e. blood lead levels above 44 migrog/dl – iirc)?” – duration of treatment for lead poisoning is typically a week, and is extremely uncomfortable for the child. Side effects include lethargy and loss of appetite.
The Hg Militia and EoH gang will typically chelate for at least two years (up to 3 or 4).
Problem #1: Hg is literally ubiquitous. It is found in tap water, vegetables, soil, breast milk, air, etc…Consequently, we all have baseline levels of Hg, and our exposure is daily – throughout our lives. One could conceivably be chelated 2 times a year throughout their life, and mercury will always be found.
Problem #2: Let’s make no mistake, the MM & EoH blame the Hg in vaccines for the so called epidemic. That said, why do they need to chelate for 2, 3, sometimes 4 years for what amounts to micrograms of Hg (the amount in the vaccines that purportedly caused their child’s autism)?
Problem #3: Expanding on #2 for a moment, and accepting the premise that Hg is ubiquitous, How do they know the Hg being pulled frrom the child’s body is from vaccines? …and spare me the “all Hg is bad speech”, I don’t see anybody screeming for the Water Authority or the Agriculture Administrator’s heads for Hg levels in their respective products.
Problem #4: They have never explained the process by which chelation reverses neurological damage. That is to say, the Hg is removed from the brain through chelation. What is the physiological process or mechanism that then causes nerve regeneration – which would have to occur for the children to be truly recovered?
Problem #5: Using chelation as a diagnostic tool is silly. It’s purpose is soley as a treatment.
I’m hungry. So if you’ll excuse me, I’m off for a veggie sandwich and a tall, cold glass of water.
Problem #4:
No I wouldn’t. But that is because I haven’t looked into had is being said about nor have I talked to any people who tried it nor have I tried it personally. So I would not be qualified to have an opinion.
OK. So if I tell you that Bernie Rimland said it was 70% or 75% effective, and that it had cured one child of a mom who was described as a “hero”, would you believe it works for some children?
Do you believe all anecdotes of treatment effectiveness, or just some? Should the FDA not do rigorous clinical trials, and instead just rely on personal reports of treatment effectiveness and safety?
However when you fast forward some number of years, some of these alternative ideas are accepted into the mainstream of medicine.
I’d say that’s very rarely the case. Alternative medicine is like a shot in the dark. The a priori assumption that it doesn’t work is absolutely the correct one. Sure, they might get lucky from time to time. The burden of proof is on the proponents of alternative medicine. The rest of us don’t have an obligation to take their claims seriously until they have some actual evidence that can’t be explained by placebo effect or coincidental remission.
It’s like Richard Dawkins pointed out (which Orac often says too). If alternative medicine is proven, then it ceases to be alternative medicine. It becomes mainstream medicine. If something is called “alternative medicine” it’s because it hasn’t been tested or it has failed its tests.
_”How many rounds of chelation are typically used for a kid who’s truly poisoned by heavy metals (i.e. blood lead levels above 44 migrog/dl – iirc)? I’m guessing they chelate until the blood levels drop to within normal range, but how long does this usually take?”_
Usually, its a matter of a few months. In this case it was a month. In this one was nine months. Certainly there’s nothing I can find that approaches the two years Brad Handley states is necessary or the six years Erik Nanstiel has been at it. I’m not sure how long John Best has been doing it, but I know its a matter of years also.
_”Do you folks think that the doctors that these people are using are insincere? Do you think that they are intentionally defrauding these parents, or do you think that they believe in what they are doing and are sincerely trying to help?”_
Some are scammers. Some genuinely believe in their snake oil. If you click the link to ‘DAN Doctors’ at the top of the page, you’ll find a list of DAN! doctors who have had ‘interesting’ medical careers. Some are Scientologists. One is Roy Kerry who’s been arrested on a charge of involuntary manslaughter of his autistic patient. One is a paedophile. Another used to be in a relationship with a paedophile.
OK. So if I tell you that Bernie Rimland said it was 70% or 75% effective, and that it had cured one child of a mom who was described as a “heroâ€, would you believe it works for some children?
Sorry, but no.
This is the same Bernie Rimland who touted Secretin as a wonder cure.
Even if you believe the few claims of “cure” or “recovery” out there, it doesn’t add up to anywhere near 75% of those claiming to have chelated their kids.
Should the FDA not do rigorous clinical trials, and instead just rely on personal reports of treatment effectiveness and safety?
You do clinical trials when there is some logical reason to believe the study will do some good. The evidence behind the mercury/autism hypothosis was weak a few years ago and is basically non-existant now.
This is bringing us back to is chelation a treatment for autism or is it a treatment for heavy metal poisoning?
If a person has demonstrated heavy metal poisoning, the person should be treated for it. If a person has autism, the person should not be treated for heavy metal poisoning, hardening of the arteries or any other condition that he/she does not have.
Matt
Kev,
here is another one–
SUCCESSFUL TREATMENT OF POTENTIALLY FATAL HEAVY METAL POISONINGS
The Journal of Emergency Medicine, Vol. 32, No. 3, pp. 289–294, 2007
The guy drank 250g of Mercuric Chloride. Yes 1/4 Kilo…
All told, he was chelated for under 1 month. (IV BAL for 5 days, DMSA for 3 weeks)
Matt
I’ve also heard that the 25 micrograms of mercury in the old vaccines is equivalent to that of a tuna fish sandwhich or thereabouts. Is that true? If so, seems like it must be a tiny, tiny amount and if so, it seems a bit weird that years and years of chelation are indicated, especially considering the steady state levels that we’re all supposedly walking around with.
I’d like to hear how the people who believe in chelation as a treatment for autism explain these questions. Might they say something like the mercury that is from a long ago exposure is ‘hidden away’ in tissues and not circulating in the blood and thus requires longer treatment than it would if it were an accute poisoning?
I wonder if there’s anyway to estimate the actual weight of heavy metals that have been chelated out of the kid by examining the falling concentrations in urine over time. I don’t know, it just seems odd that it would take years to get out the amount of heavy metal found in a half a dozen tuna sandwhiches, but what do I know.
I don’t know – I just have a hard time getting my head around how intelligent people can’t see the flaws in this theory. It makes me think that I must be missing something. I would love to hear the other side’s argument, but it’s kind of hard to talk with those folks (I’ve tried).
I’ve also heard that the 25 micrograms of mercury in the old vaccines is equivalent to that of a tuna fish sandwhich or thereabouts. Is that true?
Give or take a factor of 2 or so.
I’d like to hear how the people who believe in chelation as a treatment for autism explain these questions.
They don’t for the most part or rationalize them in some way.
Matt – yeah I blogged that one awhile ago.
Brook – the basic hypothesis is that the mercury is ‘trapped’ in some unknown way. Needless to say, this also requires more belief.
Kev–
Darnit!
Brook Trout–
People will say
1) the child is more susceptible because he is younger
2) the child is smaller so the amount of mercury leads to a larger concentration
3) the child has a genetic (or some other reason to be) susceptible to mercury damage
4) the child is a “poor excretor” of mercury so it stays in longer. This can be proven since his/her hair has (a) more mercury than the average; (b) less mercury than the average; or (c) the same amount of mercury than the average.
Matt
I hate to sound trite, but any talk of efficacy re chelation and it’s ability to cure autism is moot, until it is first proven that autism is indeed mercury poisoning or caused by excesive levels of mercury.
That hasn’t happened.
That’s not trite, that’s reason.
Hello from Upstate New York,
I have a son (PDD-NOS) who is doing amazing progress through therapy, and I have ups and downs with biomed (in terms of believing in it or not). But even when I do believe in it, I don’t go crazy. Only GFCF diet, and some supplements.
I am writing just in terms of the diet. We have a DAN doctor but also a very prominent developmental pediatrician at Strong Hospital (believe me, she is not even pro-DAN), Dr. Susan Hyman. She has seen several cases of progress with the diet, and is doing a major clinical study on it. (Double-blinded, etc etc),. It may take years to know of the results, but I just thought it is interesting to let you know of some very serious people taking the time and will to fully investigate the diet!
There was already a short-term double-blind study of GFCF in 2006. It didn’t find significant differences with the placebo group. There’s a bigger study in the works, sponsored by the NIMH. That might be the one Helena is referring to.
There’s some mixed evidence re. GFCF diets, and more research doesn’t seem unreasonable. If people are interested in trying the diet, though, there’s no reason to be involved with DAN! or other ‘alternative’ practitioners – well-trained and regulated ‘conventional’ practitioners like dietitians can help run such a diet (see for example BDA advice on diet and autism [PDF link]). As a bonus, fees are often lower than ‘alternative’ therapists (dietetic advice can often be had on the NHS in the UK) and you’re much less likely to be recommended to buy a load of expensive snake oil.
Given that both gluten and (especially) lactose are common food intolerances, this would seem to be a more likely explanation of the apparent benefits from a GFCF diet; more research should be able to determine this, though. At any rate, properly controlled trials to date give the lie to the claim that this is somehow a ‘cure’ for autism or a way to ‘take your child off the autistic spectrum’ – it may be beneficial, but far from a cure.
re. supplements, insofar as there is some evidence that some things may be helpful (e.g. eating some oily fish/fish oil), ‘alternative’ practitioners dabbling in nutrition really aren’t helping. Recommending supplements that are pointless or harmful (or interact in unhelpful ways), expensive, and sometimes in high enough doses to be dangerous, just gives that whole area of practice a bad name. When you see autism ‘experts’ giving helpful advice on how to hold your kids head so you can literally pour ridiculous numbers of pills down their throat (sadly, I’m not joking) this is both bad for the children in question, and for the reputation of dietary approaches to dealing with autism, health etc.
http://www.nimh.nih.gov/autismiacc/rochesterautism.cfm
It’s the second one down the list.
The Rochester study is supposed to end next spring.
http://clinicaltrials.gov/ct/show/NCT00090428?order=1
Matt
I’m sure this will have been brought up and discussed many times, but I think that a large part of the reason parents don’t like the suggestion that perhaps their child’s autism could be a little bit, you know, genetic is that they might have to consider whether they (or their partner) might actually be Not Quite Normal as well… And if they are in fact on the ‘high functioning’ end of the spectrum, they may well have spent their whole lives working on passing for NT, and may be very upset by anything which threatens the nice comfortable wall of ‘normal’ they’ve built around themselves…
Also, I think it’s interesting that people are talking about improving the ‘quality of life’ of their child when a lot of the time what they are really after is improving their child’s Normal-ness Rating. Rocking, flapping etc all do good things for the quality of life of most auties I know (my daughter who I suspect is aspie doesn’t rock, and I never did until very recently, and frankly I think she’s missing out – it’s a bloody marvellous way of calming yourself down, provided you don’t care about the people staring at you! I am not diagnosed autie/aspie but ADD, but I have a lot of crossover traits and such) but I have seen books which discuss ‘training’ your child not to do them. Why? Because it will make them seem less ‘weird’.
“Its a treatment that has killed. The fact – as explained – that it is worth singling out above other treatments that have killed is the fact that this death was utterly unwarranted.”
If you want to categorize treatments via chemicals into groups that have killed vs the ones that haven’t killed, I think you will find that just about every substance out there has killed. How many people die from vaccines every year? How many people die from aspirin?
“This wasn’t a side or adverse reaction”
No, it is called malpractice – ie a medical mistake. These are (unfortunately) very common. In Pittsburgh, the area where this case takes place, there are a dozen major hospitals – how many people do die every day due to medical mistakes?
“OK. So if I tell you that Bernie Rimland said it was 70% or 75% effective, and that it had cured one child of a mom who was described as a “heroâ€, would you believe it works for some children?”
Not without reading his own words for myself and researching as much as possible about the area he is talking about. And reading about the mom who is vouching for the person. Talking to the people involved would be even better.
However, to take it a step further, if there are thousands of people saying, hey, this seems to work and if I observe the effect first hand, I would be much more likely to believe it – even without a medical research paper that managed to verify the same time. (That is not to say that having research is a bad thing).
“If alternative medicine is proven, then it ceases to be alternative medicine”
Actually it normally takes years and years and years before the idea can be “proven”. The mainstream doesn’t like disruptive ideas and theories – and most of alternative medicine deals with ideas that strongly disrupt the norm.
“re. supplements, insofar as there is some evidence that some things may be helpful (e.g. eating some oily fish/fish oil), ‘alternative’ practitioners dabbling in nutrition really aren’t helping”
Where do you think the initial idea came from? It certainly wasn’t the mainstream medical community. They only finally looked at the idea at least a decade after the alternative community had started suggesting supplements like fish oil.
“I’ve also heard that the 25 micrograms of mercury in the old vaccines is equivalent to that of a tuna fish sandwhich or thereabouts. Is that true? If so, seems like it must be a tiny, tiny amount”
At the risk of being flamed… The theory here is that in the late 90’s each vaccine could have 25 mg of mercury in it. When you look at that in light of your child getting four or five shots at once, that is a total of over 100 mg. Now the “safe” daily limit (according to the FDA) is .1 mg/kg per day. For a 10 pound newborn that means the “safe” limit is .4 mg/day. So the amount given was about 220 times over the guideline amounts. I would like to think that the FDA guideline is conservative, I just don’t know if it is 200 times conservative.
Or to put it in terms of tuna sandwiches, I think a 200 pound adult would have to eat 80 tuna sandwiches at 25 mg per to get the equivalent dose.
Now, as I am sure everyone here will point out, the FDA guideline is for methyl mercury and not ethyl mercury, and thimersol is an ethyl based mercury. The counter here is that a safety limit for ethyl based mercury has never been established and hasn’t been as well studied as its methyl counterpart. Another factor is that these are newborns being injected, the guidelines
are for an adult, not a newborn. A newborn is not as resilient to toxins as adults.
Where this gets dicey is that, while most people won’t argue that the amount injected was too high, they strongly disagree that there could be any harmful effects. Or more specifically, that the harmful effects haven’t been proven. However, the since safety hasn’t been proven either I think the point is kind of moot.
Now I am sure that everyone else here will correct me where the got the facts wrong above but I think there was a reason to be concerned about the level. I don’t think that it “caused” autism (at least not for the majority of cases). But it certainly wasn’t doing any good. I think that most rational people would agree here that it is a good thing that it was removed from vaccines (at least in the US).