The Importance Of Critical Thinking

21 Jul

Introduction

Over the last few days I’ve had a flurry of activity in the comments sections of some of my older posts regarding mercury and Rashid Buttar in particular. Most of the commenter’s believe that I am being very unfair to Dr Buttar and am not taking responsibility for my daughters biomedical needs (yes, that old chestnut again). Here’s a few choice quotes:

I am so very grateful that my daughter and son-in-law were dedicated from the very beginning to find a cure for Gavin. It has been a long hard journey and well worth the effort!! And Gavin is not the only recovering autistic child. There are lots of others. With your atitude, Megan will not be one of them and she and her grandmother will most likely miss out on that joy! Such a shame.

In my opinon, by attacking this problem with just therapy, and supplements and not by chelation to remove the Mercury and the other heavy metals is giving your child nothing more than a bandaid …you have left your child in a lonely austic world that keeps him isolated from his family and loved ones.

Hey Kev, do you have a Bill of Rights for The Autism Movement? I think that the first ammendment in your Bill of Rights should be, freedom of speech! Now that’s sarcasm!

Your dead wrong about Dr. Buttar and the children of the parents that listen to you are the ones that are really being banned! Banned from a typical life that is available through what you label as quackery. They will not benefit from mommys with hairy armpits and daddys with ponytails that like to get all wrapped up in movements.

NONE OF HIS TREATMENTS WERE DONE ON A WHIM. They were and still are being done responsibly. And Gavin’s life has changed dramatically from the age of 2 to the present age of 7 next month, FOR THE BETTER! [ed – thats right, this poor kid had been ‘treated’ for 5 years and the family thought that was normal!]

You state what yours are, but truly I think there is more to the story regarding yours. I would trust you as much as I would trust the generationrescue people. Which is not a lot.

Who the hell are you really?????? Do you really have a child with autism????

There’s a lot of heat and not much light generated in discussions like these. We all have our beliefs and entrenched positions and I’ll be the first to admit, I give as good as I get in situations like this. I’m not one for being polite and humble when someone starts ranting all over my blog.

Beliefs vs Research

If you read through the comments in their entirety you start to notice patterns in thinking and behaviour from a lot (if not all) of these people – the threads themselves move and resolve themselves in a consistent fashion. People such as the above *believe*. They don’t look at the science as they believe it is tainted, they don’t think the situation through in a critical way as they’re caught up in the emotion of the situation. I can totally empathise with that as I used to be exactly the same. Here’s a quote from me in my first ever post to this blog.

Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all. That changed however when she had her DTP jab. I know there’s been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, Naomi was a lot more dubious than me but I managed to convince her) decided to go ahead with it and on the night of her first lot of jabs Megan began projectile vomiting and developed a temperature that peaked at 102 degrees. We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldn’t find much wrong with her. We were relieved but by the end of that week we knew something was wrong with Megs. She seemed subtely different. There was nothing you could put your finger on as such but the difference was there, she was late walking and was uncomfortable around others.

Looking back on that now it seems an almost alien time for me. I knew nothing about autism or autistics and I knew nothing about the ways of thinking logically and examining carefully *all* the variables (or as many as possible) in any given situation. Its only as I’ve increased my exposure to both scientific evidence and actually talked to a lot of autistics that I’ve learned that applying critical thinking to the theories regarding autism is vital. Take the above quote from me: I talk about how ill Megan was that night and she was but the only connection between her illness and the DTP jab was the one we made in our minds. Subsequent examinations of our daughter revealed no damage at all. I also talked about ‘knowing something was different’ but really, I didn’t. I’d already decided that the DTP jab was the culprit and my judgement regarding Megan’s ‘difference’ was then formed retroactively, based on that erroneous assumption.

After that realisation I decided that we needed to try and put Megan’s needs first and not our own selfish need to find a cause – Megan was/is autistic and our energies needed to be redirected into finding a cause into finding a way to intervene in the situations that cause her problems.

We were firmly in that pattern and it was only gradually, and only after abandoning the *belief* system in favour of the *research* system, that we started to see significant changes in the areas Megan needed help in. I’m not entirely comfortable discussing private medical issues on a public blog but suffice it to say Megan’s main area of concern in the triad of differences were social, emotional and communicative. But these are ASD, these are not however, specific problems. Specific problems can and should be targeted. A specific problem based on Megan’s communication problems is getting her to communicate so _thats_ what we work on. We don’t try and remove the autism as it can’t be removed. If I could offer one piece of advice to parents with newly diagnosed kids its this – abandon your *beliefs* in favour of *impartial research*, identify the *specific problems*, not the *general condition* and formulate interventions to address those specific problems. In that whole process however, I freely recognise that this most difficult part is abandoning belief in favour of research.

Its difficult as it means that you have to apply rigorous scientific criteria to everything that touches your children’s lives. This means:

1- Is it logical?
2 – Is it peer reviewed?
3 – Has it been published in a respected Journal?
4 – Is it safe?
5 – What are the known and suspected side effects?

Why are these things important? Because if a treatment has not been tested or peer reviewed or had data about it published then it is *an unknown quantity*. It is everybodies free choice to use whatever they feel comfortable about using but I think it is irresponsible for me as a parent to use a treatment that little to nothing is known about. I also feel its my duty as the parent of an autistic to inform other parents of autistics of anything – either positive or negative – I’ve personally found out about a particular person, treatment or system.

Its also interesting (and a little disturbing) to see so much odd belief _about_ autism. Some people believe that stimming is painful for autistics! Some people believe that bowel and digestive problems are symptoms of autism. Some people believe that the symptoms of mercury poisoning and autism are the same. I find it bewildering how anyone could believe any of these things as they are simply not true. But it all comes back to the power of *belief* over *research*. Whilst these people believe they have thoroughly researched the issues, a lot of the time they haven’t. What they actually do is research until they find a theory that fits with their own beliefs. Again, I can understand why thats an attractive thing to do but its simply flawed logic. if you want to be in the best position to know what stands the best chance of helping in a given situation you must abandon your beliefs and be prepared to look objectively at the science. You must accept when studies you thought were sound were not and you must accept that a study without peer review or a treatment without published data is useless and potentially very very dangerous.

The Ethics

A lot of comments lately have found humour in the idea of a global autism rights movement. They seem to feel that autism is all about children. they also seem to feel that the autistic rights movement doesn’t want help or interventions where they are needed. Again, this is down to belief over research. A lot of families may read the odd book by Temple Grandin and assume they know everything about how autistics think and feel when nothing could be further from the truth. Reading books by Temple Grandin gives you an idea of how Temple Grandin thinks and feels. Nothing more.

I find it worrying that so many parents, grandparents, godparents and siblings are so unprepared to accept the fact that their son/nephew/grandson/brother is autistic and will be for life. I find it worrying that they don’t do more to research what its like to be an adult autistic and most of all I find it incredibly worrying that to them the idea of autistics having rights is a source of humour.

The Enemy

Autism is not your enemy. It is not anyone’s enemy. It simply is. The comorbid conditions that sometimes occur in some autistics such as ADHD, Tourettes, Irlen Syndrome, lack of speech/communication, etc are all situations in which we as family members can and should intervene. The nature of that intervention however is vital. An emotive belief based response such as Chelation, crystal healing or any of the other myriad of ‘cures’ that exist won’t help at all. All the video recordings of ‘progress’ in the world don’t change that – these aren’t evidence, they are anecdotes. They don’t take any other variables into account and they aren’t undertaken in scientifically rigorous environments. If you make the choice to go ahead with these things anyway then thats your choice. All I’d ask is that you be honest with yourself about the effects these things really have. If a treatment you are trying has lasted 5 years can you really say that its working? How do you know its not just down to child development?

When full scale attacks are launched on autism, then to me that equatable to launching full scale attacks on my daughter and my friends. When people talk about curing autism I see that in terms of the removal of the person my daughter is. If you remove the autism you remove my daughter. Thats unacceptable to me.

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37 Responses to “The Importance Of Critical Thinking”

  1. Ulyyf July 21, 2005 at 11:31 #

    I’d hate to have your readership sometimes. You have to deal with the sillies. Me, I just link to you, and others, and preach to the converted. Lucky me.

    Yes, this was random.

  2. Mary July 21, 2005 at 14:08 #

    I don’t remember if I’ve ever commented before, but I’ve been reading your blog for a couple months now & looked at a lot of the archives regarding autism. My 11 y.o. brother is autistic, and I do a lot of research on it to pass on to my mom who has her hands full w/ lots of other things. I haven’t agreed with all of your ideas and conclusions, but I agree with most of them and appreciate your willingness to look at autism as something to learn how to live with rather than to fix. Thanks for sharing your ideas with all of us, even when people attack you.

  3. Ian July 21, 2005 at 16:29 #

    Kev

    I’m confused by your next to last paragraph. Our children have received interventions, including ABA therapy. They have been assessed using video recordings and standardised tests. Their results have improved. These tests were not undertaken in scientific rigorous settings – they are done at home, quickly by the therapists. Likewise we didn’t compare the kids to good controls, to see whther their improvements were real or just due to child development. Likewise the video recordings (the video recordings actually are more representative of where they are at than test BTW).

    ABA has some peer reviewed research behind it, but much of this has been attacked in the social science community, since the original Lovaas study handpicked the kids, rather than using a random sample. So by this reckoning is ABA another intervention based more on belief than science? For me, We’ve been doing behavioural interventions now for 3 years and after all that time it really is down to belief that it’s the interventions that are working, rather then they’re just naturally improving with age. I guess you’d need a double-blind placebo study to really test their efficacy, freom a scientific standpoint.

    I for one believe that ABA is not a panacea for all children diagnosed on the spectrum, but it does seem to work for some kids (mine included). I’m afraid that if we take too rigorous an approach to assessing interventions then we will be left with none. Certainly, it explains why ABA took 15 years to be adopted as a standard treatment protocol in the US, after the first Lovaas paper, and still is not available wholesale in the UK as an option.

    In the meantime, while we wait for the detailed scientific data to come in on all interventions (behavioural and biomedical) our kids get older. I’m not happy with that , so as a scientist I’ve learned to loosen my criteria, so that I now accept ABA as a valid intervention, as well as certain biomedical interventions, without the level of scientific peer-reviewed studies that I might have insisted on, before their diagnosis. I guess it’s up to each parent to assess the data there and make their own conclusions on where they draw the line on intervention.

    In your eyes I guess I crossed the line using chelation. For me, I saw their high blood level counts, we eliminated all potential lead sources, and then with the numbers still high and with the support of a pediatrician, decided to intervene. Ther levels have come down now and we have seen improvements above and beyond what I believe can ascribe to natural child development(before they were listness and crying al ot of the time, now they’ have bags of energy and happy – anecdotal I know, but true). Chelation using EDTA, under the guidance of a knowledgeable doctor, is not more or less dangerous than any other drug treatment: you need to check the liver and kidney function very regularly. This is no different from, say, taking a statin, where liver damage is a real potential issue.

  4. Kev July 21, 2005 at 16:42 #

    Ian its not my place to say whether you crossed the line or not – you’ve not come here and attacked me like so many do for *not* chelating Megan so I’m not going to leap on the defensive.

    Chelation isn’t something I feel comfortable doing at all – I especially wouldn’t feel comfortable using Buttar’s cream at all as its totally unproven. If you do feel OK about using it thats your choice. I don’t pretend to understand or condone that choice but its not for me to say you shouldn’t have it. My only proviso is that by making it available, Buttar leaves himself open to legitimate criticism. Its legitimate to ask about the science behind his cream and its legitimate to voice concerns about someone who claims to be able to cure cancer and reverse old age.

  5. Autism Diva July 21, 2005 at 18:54 #

    There is a whole belief system built up around the results of the “lab reports”. Nearly all of the parents use one of 3 (maybe 4 labs).

    Doctors Data was tested by Dr. Laidler in a way that any parent could do, almost. Dr. Laidler made up a false urine sample using known mercury free ingredients at a university lab, he divided the false urine (distilled water and creatinine) and sent it off in 2 urine specimen containers provided by Doctors Data.

    He sent it to DD and got back 2 different results and both high in mercury.

    What any parent can do is get two sample cups (they will have to pay for 2 tests of course)

    Use any person’s urine, divide it into two samples (same specimen) and send them off with 2 different names.

    It would be interesting to get more sample cups from different labs and split the same specimen, too.

    See if they get the same result.

    That’s at least somewhat scientific. The labs make money if they tell you that you need more lab work, some of the “labs” also sell vitamins, at least they all seem to work with the same doctors, so there MIGHT be some fishy business going on there.

    If Autism Diva was going to put out tons of money into Buttar’s lotion, she would want evidence that the stuff passes through the skin. Chemically speaking, it shouldn’t be able to pass through skin. Science says, it probably can’t chelate, belief says it does anyway.

    Also, all kids develop any child would change over 5 years.

    Thanks, Kevin. You are a great father, don’t let anyone tell you different.

  6. Ian July 21, 2005 at 20:50 #

    Kev

    I’m not too knowledgeable about Buttar’s cream, since I’ve not used it. I’ve used EDTA to chelate for lead poisoning. Whether you chelate Megan or not is totally up to you and from my understanding you have no evidence that heavy metal toxicity in any form is a problem for her, in which case it’s perfectly reasonable not to chelate.

    I’m not sure what penetration enhancers Buttar uses in his transdermal cream, but the main ingredient I do know is menat to be DMPS, which has been wdely used by doctors in Germany, China and the former Soviet Union, particuraly for occupational mercury piosioning of adults. DMPS has been shown to be effective, at least for this population, in its goal of reducing blood mercury levels.

    As far as I know there are no studies to show DMPS”s skin penetration characteristics, even with standard penetration enhancers like DMSO. Percutaneous drug delivery is not a major drug delivery route, but it is increasingly being researched by drug companies. I don’t see anything about DMPS’s chemical properties, molecular weight or otherwise, to suppose that it should be different than other drugs that are currently formulated for percutaneous drug delivery, and be absorbed through the skin. As far as I know there is no evidence that it (DMPS) is or isn’t absorbed. Buttar has, as far as I know, no direct evidence of the pentration characteristics of his formulation. Having said that I’m not sure that legally in the US you need to have such data. I believe componding pharmacies can reformaulte a FDA approved drug into a oral, suppository, IV or transdermal preparation, without having to prove it’s effectiveness. This would explain why you can have suppositories formulated if you prefer, rather than having oral drugs (e.g. the French are very ken on suppositories).

    As far as the choice of chelation / not chelation, I feel the choice was made easier for me as I had blood lead test results from Quest Diagnostics, who are not a fly-by-night lab. Mercury testing seems a whole different kettle of fish to me. Unfortunately there are problems with most mercury tests (blood, urine, hair), mainly due to the incredibly low concentrations that are required to be considered poisoned. This seems to be a key hole in science today — having a mercury test that people can rely on, where the results are accurate and reproducible. My kids urine mercury tests all came back (from a variety of labs) in the normal range, so I has to assume, from a scientific point of view, that mercury was not a problem for them.

  7. Autism Diva July 22, 2005 at 06:02 #

    This was written by a doctor with autism spectrum kids. He pointed out elsewhere that most stuff that is absorbed through skin needs to be something that is attracted to fats, or something. Also something about the polarity makes it unlikely to go through skin.

    “Buttar’s transdermal potion “stynks” because it is made from either 2,3-dimercaptosuccinic acid (DMSA) or 2,3-dimercaptopropane-1-sulfonate
    (DMPS). Both of these compounds contain two thioalcohol (-SH) groups which is what puts the “stynk” in natural gas odorant.

    By the way, since these compounds are both very polar and water soluble, they also will cross intact skin very poorly (i.e. hardly at all). You will note that none of the people peddling these “transdermal” nostrums have bothered to see if any of the stuff actually gets into the system. That’s because it won’t – not in useful amounts.

    A local parent who is using a similar salve from a local quack made the following telling comment to me a few months ago:

    “When Johnny (not his real name) was taking the DMSA by mouth, his urine smelled really foul [DMSA and DMPS are both excreted in the urine]. Since we switched to the transdermal preparation, his urine doesn’t smell bad any more!”

    She saw this as a positive effect and wasn’t too happy when I told her that the “sweet-smelling” urine was a sign that none of the stuff was getting into his system. She doesn’t believe me, of course, since I contradict what
    her guru (excuse me, “doctor”) tells her – and he is going to “cure” her child of autism (naturally).”

    The labs that tell people that their kid’s urine, blood or hair is full of toxic metals may be flat out lying to their customers.

    Buttar still hasn’t said that he knows it goes through their skin. He just says he has a great scam going because it obviously works, yeah. Don’t bother having an independent lab test it, oh, no.

    I hope someone takes makes him accountable for his actions.

  8. Erik Nanstiel July 22, 2005 at 13:32 #

    My daughter was a poor excretor of mercury…her hair levels weren’t very high when we first tested her. After using Buttar’s DMPS cream, her hair and stool levels skyrocketed.

    We backed off the doseage a little bit, because of some behavioral difficulties during chelation…and we did ANOTHER hair test…the levels were lower. So it appears that higher doses of DMPS make my daughter dump greater amounts of mercury. Lower amounts make for a slower excretion.

    I’d say that’s pretty good evidence that the creme IS, in fact, “trans-dermal.” And evidence that it DOES help a person excrete mercury.

    And I wouldn’t be using it on my daughter if I hadn’t met children who actually benefitted from its use. I’ve met more than a dozen children…and they all did so with help from chelation, nutritional supplementation and behavioral therapies.

    You’re sitting on these blogs, complaining amongst yourselves about us parents, etc….and just hating what we have to say…but more importantly, what we’re showing the world. That autism is treatable. Children who receive help early enough in life…can begin developing normally, again, as they were before their regression.

    Erik

  9. Kev July 22, 2005 at 15:04 #

    See what I mean?

  10. Autism Diva July 22, 2005 at 21:06 #

    Erik,

    What if *we* are right and you and your fellow mercury parents are wrong and Buttar et al are ripping you off? You don’t want to hear it, if you found out it was true you might have to back out of your commitments to autismmedia and be humbled.

    It looks like you are far too invested emotionally in this to even think straight about it.

    You didn’t comment on whether or not your daughter’s urine changes odor when you use the lotion.

    Are you willing to find a real doctor and have him test her blood to see if there is any DMPS in it after you rub it on the outside? Buttar hasn’t done any tests like that. You don’t find that a little, uh, shady on his part?

    Buttar is not making any specific claims about how the stuff works, he just keeps repeating that it does work. He had an opportunitiy to discuss science at the Autism One conference and instead emotionally manipulated the audience.

    At that Autism One convention, where you videotaped Buttar, he made a fool of himself and ended up running way over time leaving Wakefield with very little time for his presentation.

    Buttar acts like he’s a snake oil salesman. He is not a “toxicologist”. He’s not a board certified anything.

    You must know that.

    Are you willing to do a test of the labs you are depending on? Are you willing to take two hair samples and stool samples from your daughter and send them off to two different labs at the same time? You say you are mercury toxic per lab test, too, how about if you do the same with your hair and stool?

    The TD-DMPS is not chelating your child. It’s very likely that the lab results are made up or at least produced using bad equipment.

    We won’t know until someone tests THEM.

    When will Buttar’s presentation be up on your website?

    Oh, and is anyone from your friends willng to tell the truth about how many parents were there at the “rally” in DC?

    Perhaps the media will answer that question, Autism Diva is sending emails to the media outlets in DC who were there to ask how many parents were there.

    So far, looks like 50 parents 20 kids and the speakers (about 9 of them) plus 20 of the media.

    Not exactly “700″ or even “hundreds”, is it? Why are they lying about how many showed up?

  11. Kevin Champagne - Syryacuse, NY. July 23, 2005 at 04:46 #

    Auutism Diva wrote:

    Buttar still hasn’t said that he knows it goes through their skin. He just says he has a great scam going because it obviously works, yeah. Don’t bother having an independent lab test it, oh, no.

    Diva, I would like to see a lnk to the credible news story where Dr. Buttar says “he just has a great scam going because it obviously works”.

    Autism Diva then wrote:

    A local parent who is using a similar salve from a local quack made the following telling comment to me a few months ago:

    “When Johnny (not his real name) was taking the DMSA by mouth, his urine smelled really foul [DMSA and DMPS are both excreted in the urine]. Since we switched to the transdermal preparation, his urine doesn’t smell bad any more!”

    She saw this as a positive effect and wasn’t too happy when I told her that the “sweet-smelling” urine was a sign that none of the stuff was getting into his system. She doesn’t believe me, of course, since I contradict what
    her guru (excuse me, “doctor”) tells her – and he is going to “cure” her child of autism (naturally).”

    Diva, it’s widely known that oral chelation is only 5-10 percent absorbed so that would explain the smelly urine before going to transdermal chelation and noticing less smelly urine. When the oral chelation was not absorbed she smelled it in the urine, when it was absorbed through trandermal application it wasn’t noticed through smelly urine because it was more absorbed and was excreted over 48 hours and when it’s excreted it’s excreated mostly through stool not urine.

    Autism Diva wrote:

    Dr. Laidler made up a false urine sample using known mercury free ingredients at a university lab, he divided the false urine (distilled water and creatinine) and sent it off in 2 urine specimen containers provided by Doctors Data.

    Dr.Laidler is playing with fake urine samples but Dr. Buttar is the quack?

    Kevin Leitch, please tell me what you think, causes autism?

    K. Champagne

  12. Jim Laidler July 23, 2005 at 05:03 #

    Kev, I don’t think that you were “hard” on Dr. Buttar – he was much harder on himself (I suspect inadvertently) than you could ever hope to be.

    I won’t clutter up your nice blog with a lot of scientific rebuttal of Buttar’s nonsense, but I would like to leave this little nugget for people to chew on:

    A lot has been said about children who are not “excreters” (or “excretors”) of mercury – this is baloney. Mercury is not “excreted” in the sense of being actively removed from the body through a biochemical process requiring enzymes or energy expenditure.

    Mercury is passively “excreted” in the urine, bile and, yes, even a small amount in the hair. Not even the great Boyd Haley has been able to point out a single metabolic pathway that is required to excrete mercury. Much has been made of metallothioniens, but these do not aid in excretion – they sequester the mercury inside the cells, actually making it harder to excrete.

    So, until someone – preferably someone with some data to support them – overturns the over 60 years of studies that show passive excretion, the idea of someone not being an “excreter” of mercury will have to sit out the game on the sidelines.

    Keep up the good work!

    Jim Laidler

  13. Autism Diva July 23, 2005 at 07:26 #

    http://autismdiva.blogspot.com/2005/07/tiaras-for-dr-laidler.html

    Kevin Champagne (nice name) wanted a legitimate quote… well go to that blog entry and see the text of a tv interview from North Carolina home of the great Dr. Buttar.

    He says: “If this was a sham then I’ll tell you what. This is the best sham that has ever been put on. I think you’d have to agree with that,”

    If the video is still on the tv news website you can go there from a link on that blog page and hear him and see him admit it, and look like a slimy charlatan while saying it.

    Your idea about urine smelling and absorbtion is silly.

    The stuff has to get processed through the kidneys, if it’s going through the kidneys it makes the urine smell bad.

    If it’s entering the skin, it’s entering into the blood otherwise it’s not chelating the whole kid now right? The kidneys have the job of cleaning stuff out of the blood, including DMPS, once the dmps goes through the kidneys, it’s gets cleaned out right?

    Where does this stinky stuff go? (It’s stinky even in the lotion form when they put it on the kid)

    It goes in the URINE, which then smells….guess…guess how it smells.

    That’s right,
    STINKY!

    Like rotten eggs because it has …. sulfur in it!!

    But if the stuff never was absorbed the urine won’t smell…stinky!

    So the kid gets stinky stuff rubbed on him for no purpose! And his parents lose money in process.

    Dr. Laidler wasn’t playing with artificial urine, he was performing a scientifically planned test.

    How ’bout if you do the same thing? Buttar wouldn’t get called a quack if he wasn’t so busy acting like one.

    AD

  14. Kev July 23, 2005 at 12:19 #

    “Kevin Leitch, please tell me what you think, causes autism?”

    I don’t believe there is a single cause. I believe that in order for one to become autistic one has to have the genetic potential for autism. I don’t believe it can result solely from environment or insult.

    That said, I’m prepared to accept the possibility that autism can be ‘triggered’ in some cases (note that trigger is not the same as cause) by an environmental agent. The one thing I am definitely sure of is that all the credible evidence indicates that that trigger is not vaccines. neither MMR nor Thimerosal.

    And thanks to Ulyyf, Mary, AD and Jim for the kind words and encouragement :o)

  15. Matt Setchell July 23, 2005 at 20:07 #

    I jsut cant believe in the 21st centuary parents think that some cream is going to get mercury out, and that people dont listen to any scientific proof.

    The fact that all this stuff about being able to treat autism is bollocks, im impartial, have no links to anyone with autism – and even I can see it seems the only time people think its worked is when there has been a few years betweeen first use and the current time, but isnt that just natural progression?

  16. Autism Diva July 23, 2005 at 22:34 #

    Matt Setchell,

    The parents are not only seeing natural progression (and keep in mind it doesn’t “work” for all kids), but the parents change their expectations for the kid when they start to use the stuff. They may be kinder and more encouraging to the child when they start the new treatment, even unconsciously.

    No one is doing double blinded , “A-B-A-B” type studies with this.

    “ABAB” is when the child would get either the real stuff or a sham treatment in alternate treatments to see if there was a difference. But really, 1st they have to prove the claimed real treatment here is penetrating the skin!

    How obvious is that? It is mind boggling how gullible and uncritical some of these parents are.

  17. Ian July 27, 2005 at 07:30 #

    Kev,

    I’m confused again by the last series of comments to your blog – obviously you have no control over them, but I’m surpised to see them without any reply, now 3 day son (ok I’ve been busy at work in the mentime).

    1) I didn’t see anyone respond to your reasonable position of “… that in order for one to become autistic one has to have the genetic potential for autism. I don’t believe it can result solely from environment or insult.” Many people who are treating their children biomedically that I know, agree with this, and are not alligned with the GR website absolutionlist position. Autism, was described to me by a serious biochemist as, like many complex metabolic disorders, a giant game of pichenko — it’s a total crapshoot as a result of the different genomic variations and environmental factors. The different outcomes are also a total crapshoot — some kids are born autistic, others succumb post-birth, with no one insult being the only cause, generally it’s a cumulative effect of insults, with each child being different.

    In the opposite camp to GR there is a total denial that it could be enviromental, while all around them study after study about other diseases are showing genes + environment explaing why some get a particular disease and others don’t.

    I don’t believe mercury is my kids environmental insult, nor is it vaccines. I don’t know if my kids particular etiology is shared by an other kids, to the point where they’re large enough to be considered a particular sub-group, but I do beleive that heavy metals in some ways plays a part in a subsection of kids issues (probably as a secondary effect of a metabolic dysfunction). This whole debate reminds me of “Crossfire” (ok you have to be in the US toappreciate this ( for those in the UK Crossfire was/is a TV prog in the US in which they had a “left” and “right” wing commentator who “discussed” issues .. aka shout at each other and work their ego)). All the noise on both extremes obscures the middle position where the vast majority live, but unfortunately it’s boring, so they get ignored. In the UK, one still gets something like a debate these days, although things seem to have degenerated to the shouting level of debate, one is accustimed to these these days in the US.

    2) I was upset by Autism Diva’ comments. I don”t know anything about her personnal circumstances, but I thought her comment …” It is mind boggling how gullible and uncritical some of these parents are.” .. was cruel. I know from my own perspective that having multiple children on the spectrum under 5 is extremely stressful and painful. Unless you have experienced it yourself, I don’t think how desperate you are for answers when you are first presented with a PDD/autism diagnosis. Modern science offers amazing answers to previously deadly diseases, so to be faced with … “there is no cure.. it is a life long disorder … start grieving now .. ” is hard to take (these are quotes). TV doesn’t help, with TV med-drama programs offering constant images of miracles being performed (I saw only the other day people’s perception of CPR , based on TV, was way out of step with reality, in terms of success ratio). “…some of These parents” are faced with something most parents of “normal” kids could only begin to understand. It’s completely natural that they look for alternative answers. If you have to blame someone, blame the lack of research into autism, both cause and treatment (both biomedical and behavioural). Society has let these parents down .. they’re completetely underprepared for this, as are the “experts”. While their friends are worrying about whether Johnny will prefer the Incredibles or Spiderman for their birthday, or whether they’ll dislike the paint color of their bedroom, we’re worrying whether our children will ever speak, or will be able to leave a semi-independent life as adults. It’s a lot to take on board. I’d appreciate it if A.D. thought before she spoke next time…

    Ian

  18. Diane July 28, 2005 at 01:41 #

    Hello, I just wanted to say that I have a 4 year old autistic son, diagnosed at 2 and 1/2. I am one of the very few parents I know that believes their child was born with autism. Luckily, I have had many civil discussions with parents who use chelation, diets, vitamins, chiropractors, massage therapists, etc. to treat their child. My son has had a little OT and a LOT of speech therapy, plus Floortime. Maybe I’m a little different from the other parents because my son has progressed so much with his non-biomedical treatments, and because he has never smeared feces, injured himself, does not hand-flap, spin, etc., is very affectionate and likes hugs, and has very good receptive language skills, so he generally listens to us. Yes, he has a little bit of visual field stim, doesn’t always like to look us in the eye, and it’s taken a year and a half of private speech therapy five days a week to improve his expressive language, but I can fully see him living on his own when he is an adult. Now that I’ve said that, I’ll also say that in some regard I can’t blame some parents from trying “everything” because I know that some of their children are a lot lower on the spectrum. I can see that if one has an autistic child with a lot of behavioral issues, it could drive you insane and make you seek any kind of therapy out there. It just comes down to this…I don’t judge you, you don’t judge me. To each his own.

  19. bonni July 28, 2005 at 02:20 #

    I can’t blame parents for looking into everything possible. Heaven knows I have, and I continue to research options and possibilities.

    I just can’t understand the administration of potentially harmful or expensive-but-useful “therapies” in the belief that it will “cure” the child. I also can’t understand abandoing all shreds of logical and critical thinking in favor of one’s personal “beliefs” when it comes to matters of medicine.

    Faith is a great thing for matters spiritual and religious. It’s a lot more dangerous when applied to matters of science and medicine.

  20. Diane July 28, 2005 at 04:23 #

    Bonni, I agree with you. The way my husband and I look at treatments is this: you only have so much money and time; therefore, you need to put your resources into what you believe will help the most.

    For us, the most important thing for our son is that he learns to talk and have back and forth social interactions with people. Private speech therapy is expensive. We could not do that and other therapies that cost money. In additon, we didn’t want any therapies that put chemicals or mega-doses of vitamins in his system. Also, we did not want to put our son on a diet that would single him out socially (i.e., no cup-cakes) more than he already is. (My husband thinks the gluten-free/caisen free diet might show results because by its nature cuts out a lot of sugar and processed foods, thereby evening out blood sugar levels.)

    Our view is that we want to give him as normal and loving a family as possible, and so far, he seems to really respond to that. Basically, this means we stick with mainstream medicine and mainstream autism expert advice, because we cannot know or research everything. We need to put our faith into either the mainstream system or the alternative medicine system. We will not do both because they tend to contradict each other too much, in our view. As scientifically minded people, we chose this path. We are comfortable with it.

    As for others who choose a different path, that is their choice. I could moan over how they are giving their children unproven treatments, but in the end, their child is not my responsibility. My husband and I are only accountable for our son and must take care of him in the way we see fit. I don’t mean to sound harsh or uncaring, but it saves me from getting riled up over other peoples choices.

  21. Kev July 28, 2005 at 08:33 #

    Its really very heartening to read so many positive accounts from parents. One gets used to reading some very aggressive anti-autistic rhetoric and it can be hard sometimes to remember that the vast majority of parents don’t go down that path.

    “As for others who choose a different path, that is their choice. I could moan over how they are giving their children unproven treatments, but in the end, their child is not my responsibility. My husband and I are only accountable for our son and must take care of him in the way we see fit. I don’t mean to sound harsh or uncaring, but it saves me from getting riled up over other peoples choices.”

    Diane, I can totally understand your viewpoint but it worries me so much that the more impetus the more highly politicised parents get regarding the mercury/chelation issue the more likely this is to result in a lessening of research into other areas of autism.

  22. Diane July 28, 2005 at 14:02 #

    Kev,

    I understand what you’re saying about highly mobilized parent movements, but, as far as I know, most of the money for research at major universities (in the US) is going toward research into neurological studies, genetic tests, and studies of siblings of autistics to see how they develop. Actually, my younger son, who is 18 months, takes part in one of these studies at a major state university. Granted, it still isn’t enough (in my opinion), but I don’t see the mercury=autism hypothesis having a great impact on research dollars, even though I know many parents who subscribe to it. In fact, some of these parents are taking part in the mainstream studies the universities are conducting.

  23. Autism Diva July 29, 2005 at 08:11 #

    Ian wrote that he thought the statement:
    ” It is mind boggling how gullible and uncritical some of these parents are.”

    Autism Diva can’t see that that is cruel. It is true about SOME of the parents. It is not true about all of the parents of autistic kids who try alternative treatments.

    The gullibility of SOME of them IS mind boggling. For someone like the head Rescue Angel, he’s either gullible or just a selfish liar. Check out what he has said to Kev and check out his agenda.

    Autism Diva has an autism spectrum child (now 25 years old and quite disabled) who at 5 years old tested as mildy retarded, even though this kid could read at age 3 1/2. This is a very disabled person. Autism Diva raised that spectrum kid along with a normal child, as a single-parent, whilst continually being below the national poverty line. She didn’t have a kid who screamed or bit, but Autism Diva knows parenting under harsh circumstances.

    Autism Diva has also been very deep into alternative medicine, she just never was so gullible to think that chelation could undo brain damage. She was also never rich enough to make a fat target for a quack.

    It’s massive gullibility and lack of basic understanding of science that allows people like Buttar to rake in the bucks.

    The parents can do what they want. No one is stopping them. Autism Diva wouldn’t try to stop them if she was given the (impossible) absolute right to stop them.

    But their “activists” are pushing an ugly agenda in the media that denies the existence of adults with autism, for the most part and is has some very, very venomous folks in it. Another side effect of this all is the pushing of antivax beliefs. As much as they’d like you to think they aren’t antivax, it would seem from their comments that more than half of them will never vaccinate again and recommend that to others.

    The other thing is what happens to the kids who never get near “cured”? Do you think that they aren’t aware that they are the failures? What did they miss out on in the way of useful therapies when their parents were spending hundreds on useless therapies?

    Even Bernie Rimland’s long standing “cure” of vitamin b6 and magnesium is based on no science, just collections of anecdotes, essentially. He found one disorder that is treated with B6 and magnesium and decided that all autistic kids needed the same, based on nothing but his opinion, from what I have read.

    The other problem with the gullibiltiy is that if you show the parents the science that contradicts what they believe, they refuse to listen. Maybe that’s gullibility plus stubborn pride.

    The autistic children (and their siblings and parents) could benefit from the money that is being wasted on this garbage. People need to say, “this is garbage”, otherwise more and more people will get sucked into it.

    A couple of autistic kids were nearly killed by a chelation quack in the US. Saying the parents are gullible is nicer than calling them some other names that SOMEtimes fit SOME of them.

    Autism Diva is definitely blunt and frequently cranky, but she has been over a year in reading and interacting nearly daily and being harassed and insulted by representatives and members of the mercury/autism parents. That explains some of the attitude. She also has a need to see things put right and for lies to be corrected. That’s an autistic thing.

  24. Autism Diva July 29, 2005 at 08:13 #

    ooops,

    Ian wrote that he thought the statement —— was “cruel”.

    Autism Diva forgot to finish the first sentence.

  25. bonni July 29, 2005 at 09:15 #

    I have given birth to four children, currently ranging in age from almost-20 to 3.5. Only one of those children is autistic, and that is the child with whom I had a medically indicated epidural.

    The use of epidurals as routine in childbirth coincides pretty closely to the “sudden increase” in autism.

    Therefore I conclude that epidurals cause autism! Not in all children, of course, but in some who have special vulnerability to the drugs used in an epidural (which do cross the placenta).

    That makes about as much sense as a lot of the “theories” I’ve seen, and has about as much supporting evidence. Anyone with the smallest modicum of critical thinking ability could easily debunk it, but if it were presented convincingly enough with “statistics” to show correlation, what do you want to bet a “movement” would start up… ?

    And THAT is the problem with uncritical thinking.

  26. Kev July 29, 2005 at 09:40 #

    Bonni wins the thread ;o)

  27. Autism Diva July 29, 2005 at 20:00 #

    Not that you need a second opinion, Kev.

    but

    Bonni wins the thread.

    And she gets a tiara.
    :-)

  28. Kevin Epstein August 10, 2005 at 21:11 #

    Sorry to ask this question in this forum but I could not find anywhere else.

    My concern: My son recently went to the doctors office for routine hep shots and chicken pox. Two days later we receive a call from the doctors office stating that they erroneously gave our boy an mmr shot instead of the chicken pox shot. Problem is our son already had his mmr shot about a year ago.

    Question: Does anybody know the effects of a double shot of mmr within 1 year? Is this serious? Please help.

  29. Kev August 10, 2005 at 21:46 #

    That is incredibly irresponsible. I can’t speak for the medical issues but I’d definitely be persuing an inquiry.

  30. kelli February 17, 2006 at 06:15 #

    Dear Kev,
    I ran across this blog today and I have enjoyed readinhg it. My son just turned 3 and was diagnosed a year ago. While waiting for the official diagnosis, I read everything I could on treatment including every known book out there. Being from a research based work environment, I was and still am hesitant of biodmedical treatment. After weeks of debating the options, I had come to one conuclusion that I knew I could live with. While I had no intention of pursuing biomedical treatment, I had decided that if there was a lab that I could have done on my son at a typical lab (not specialized in autism labwork) then I would feel like I could trust the result. If the result showed anything other than normal, I would pursue it further and reconsider my viewpoint. The one lab I could do through my pediatrician’s office with justification for insurance purposes was organic acid on the urine and the stool for ova/parasite/fungal/yeast/WBC …blah, blah, blah. (I really can’t remember the actual name of the test, but I have the results and these are all included.) Anyway, they all came back fine. My son does not have yeast in his stool so I feel as though it is safe to say that he shouldn’t have a gut problem. He has no bowel issues, either. I am sure others will tell me that he can still have a gut problem even though the tests don’t show it. My argument would have to be that if he had a big enough gut issue that it changed his behavior, then it should be significant enough to register on a lab tested anywhere, not just in a special lab. So i continued to pursue some form of ABA therapy. We relocated our family so he could recieve this therapy and has been for 8 months now. Yes, he is a lot better. But it is hard work and it is constantly changing. We were fortunate enough to find a psychologist who has been treating autistic kids way before the incidence was on the rise. Our program is very individualized. It has to be to work. Our son’s motivations and behaviors are changing constantly. If you have ever been in therapy like this, you understand how quickly behaviors develop and the requirements placed upon your expert to adapt in order to regain compliance and increase or change the behaviors and identify the motivating factors.

    The first thing I want people to think about are all of the statements on how their child got better or worse when they stopped giving this enzyme or gave more to this vitamin. As a mother of a child in intense behavior modification, I have to say that your child would be doing that regardless of what you gave him or her. True behavior modification also means realizing that your child’s behaviors are reinforced in one way or the other all of the time. I am not saying it is our “fault”. It’s human nature. How we respond or don’t respond every moment of the day will shape their behavior. If you “ignore” a tantrum, then praise them once they are quiet, you may wonder why tantrums are now getting worse. Maybe the length of time between the end of the tantrum and the time he/she was praised wasn’t long enough. Or the praise he received for calming down was too overplayed. Clearly, the intention isn’t to make it worse. But maybe this happens a few times and soon he realizes tantrum, stop crying, then tickles or treats. Trust me I have been there many times over. There is no way to prepare in advance. But a good behaviorist will look at any behavior and be able to find a way to change it.

    I don’t mean to bore you with the details…. I just want to make it clear to anyone who reads this that we do shape all their behaviors, sometimes we aware, sometimes we are not. So how would one doing biomedical treatments know if it is causing the changes? Just yell at a kid once and give attention to him for inappropriate behavior or let them escape a task because you are trying to ignore the tantrum when in turn you may have reinforced him to use a tantrum to escape the task the next time, and it just so happens you started a new pill the week before. Are you going to assume that the pill has made them worse? All I am asking is for those who argue with you regarding critical thinking to realize that behaviors change constantly and are very dependent on everyone else’s behaviors so you are doing your pocketbook and pills an injustice if you don’t realize this. And before anyone thinks I am insulting them for contributing to their child’s behavior, let me remind you I am speaking from my own experience, therefore I am insulting myself as well.

    The second thing I want to say is that anyone who has tried behavior modification and was unsuccessful, please think about this. If you had a program or even a single protocol and after two weeks to one month you saw no progress, then shame on your therapist or psychologist or whoever designed your program for not changing it. If it has stayed the same for longer than a month, you weren’t with the right behaviorist. This person should be able to pull out a plan b, c, d and so on and be able to explain as to why your program didn’t work as well as justify and provide data explaining why plan b should be your next move. Please just be aware that there are several cookie cutter type programs. I know, because we started with one and it worked great for about 2 months. When my son decided he had enough, the first behaviorist had no clue how to make him want to learn. She didn’t know where to go but to continue what we were doing. Unfortunately we had to take a few months to focus and learn what would motivate him to want to learn. Please watch for cookie cutter programs when you know other’s are doing the same as you. They shouldn’t be. Every child is different and learns differently.

    Sorry about the soap box. I will get off now.

    This week, I talked to a woman who wanted to inform me of all the biomedical treatments she has done for her son and how he is cured. I listened and bit my tongue ALOT. However, it does raise the question “Am I doing everything I can?” I am willing to have further labs done. If for no other reason, than to justify to myself that not only does my son not fit into the typical description, but his labwork proves it. If some things do come back way off base, then I will approach the need for supplements if I feel it is warranted (in normal doses). Problem is, I don’t have the time to research which labs should show whether or not further testing needs to be done. Do you have any suggestions? And have you heard what laboratory to use or not use? If I can do a few more tests, then I can make a better decision as to whether or not adding to our treatment would be useful to our son.

    I am hoping you’ve lit a fire under enough people that you can give me suggestions as of where to go from here.

    Thanks, K

  31. Kev February 18, 2006 at 11:29 #

    Hi Kelli,

    Thats a fascinating comment and I commend you for taking as much of an evidenced-based approach as you could under the circumstances.

    I think the problem on a wider scale is that we see autism as a problem. the vast majority of the autistic people I’ve spoken with don’t see autism as a problem – and that includes people who others would classify as high *and* low functioning – but as a way of being, a viewpoint I’ve come to accept and see the sense of myself.

    However, that doesn’t negate the fact that people with autism sometimes have comorbidities that can be disabling (e.g. constipation, epilepsy) that should be intervened in. You yourself have elected to go down an ABA based path. Personally, here in the UK, not a lot is known or offered about ABA so we persue other options (notably TEEACH/PECS/etc).

    My overall stance is therefore that I don’t wish to alter the fact of my daughters autism but I cannot ignore the specific issues that affect her.

    I guess the ‘am I doing everything I can’ question is one only you can answer. To me I have to balance the need to keep my daughter healthy above all else and therefore treatments that have no safety or eficacy trials or too much of an unknown quantity – especially when the underlying premise of the treatment is very ambiguous or demonstrably false (e.g the whole vaccine thing).

  32. kelli February 25, 2006 at 05:18 #

    Thanks for your reply! Do you know anyone who has tried to do any of the testing for the biomedical approaches? Someone who isn’t brainwashed, but thought they would rule out some of those therapies? If so, what lab did they use? What lab is recommended to start with? I can’t ask these questions to anyone who truly believes in all of these therapies because they will try to convince you to do it all. I need advice from someone level headed. All I am looking to do is lab work. And if I do decide to send a hair sample or something, then I plan to send one of my daughter as well (not autistic) as my own control in the study!
    One of our therapists told me today that when in school, she researched all the stuff on chelation. She said that if you dig deep enough, you’ll see that these docs aren’t charging the patient most of the time. What they are doing is basically a study. A study on how many will come give it a try and the results!

  33. HN February 25, 2006 at 05:53 #

    Dear kelli,

    Most of those tests are available through most hospital labs. They are often much cheaper than the “DAN!” recommended mail-order labs. See:

    http://neurodiversity.com/weblog/article/14/chelation-autism

    If only to provide some information to us, it would be interesting if you could get that therapist to provide you a piece of paper with the list of the references that she researched. Especially about the doctors not charging “most of the time”… that sounds very suspicious.

    I would question your therapist recommending such tests and chelation. This may be beyond the scope of her expertise, and she should be reminded that she is to provide therapy and that your child’s doctor is the one who should provide medical referrals.

  34. Kelli February 28, 2006 at 18:03 #

    I will ask her how she went about finding out about the “no charge” chelation. But I need to clarify that she NEVER told me to do anything biomedical. I was actually telling her about finding this website and we were laughing about how many biomedical people get sooo fired up and respond to Kevin. She is against chelation and was just making a point as to how unsafe it is yet people just go and do it. My son’s doctor is focused on catching up on skills. We really don’t have any medical issues that require any attention. We just want him to know and understand the things a child his age should. We want him to be able to function in a group setting with other kids.

  35. HN February 28, 2006 at 18:18 #

    Kelli said: “We want him to be able to function in a group setting with other kids.”

    That is what my son’s special preschool team did. This team consisted of a teacher, aide, speech/language therapist and OT/PT (occupational/physical therapy). You may want more of the latter. The doctor that was most involved was the neurologist, and his most useful function was writing the letters that convinced our health insurance to pay for the private speech therapy.

    Thanks for the clarification about your therapist’s opinions.

  36. Cathrine April 25, 2006 at 07:17 #

    I myself am autistic and it’s been a long interesting road. What mine was caused from is entirely unknown since I am older and not in the mercury poisoning generation. I totally agree with what you said, “If you remove the autism you remove my daughter.” I never really did get actual treatment since I was in an extremely poor family but I was taught to study people till I was comfortable enough to communicate with them. I spent most of my life mimicking everyone else but have finally started to find my own person. I remember watching Terminator 2 and seeing the part at the end where he says now I know why you cry after going through the whole movie as an uncaring and unknowing robot and it reminded me of myself in many ways. It has been a lifelong process but I’d never want to be anyone else. I may not be able to give you any new research articles or anything but experience has taught me that one can only be normal to their own set of standards.

  37. Kev April 25, 2006 at 11:00 #

    _”It has been a lifelong process but I’d never want to be anyone else. I may not be able to give you any new research articles or anything but experience has taught me that one can only be normal to their own set of standards.”_

    And that’s just as important as all the research in the world Catherine. Thank you for sharing your story.

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