Autism Vox

168 opinions for David Kirby and Autism Speaks

• jypsy
  Mar 28, 2007 at 11:22 am

  Equally small & quibbling point but I noticed (on another blog) Lisa Jo Rudy of About Autism.com refers to an 11 year old boy as “a young man”. Doesn’t leave much room for childhood between toddlerhood and manhood….

• Club 166
  Mar 28, 2007 at 12:00 pm

  … And why, for that matter, is the National Institute of Mental Health funding a clinical trial of chelation therapy as a treatment for autism? …

  Why, indeed? The usual way one should go about these things is that first you prove that something (i.e., mercury) actually causes a problem before you do a study to see if removing the mercury fixes the problem.

  But if you throw enough money at researchers, they’ll do whatever study you want them to. Let’s just hope it’s a well designed study (prospective, double blinded, matched controls).

• KC'sMommy
  Mar 28, 2007 at 12:43 pm

  Hi Kristina,

  I didn’t know that Wright is the daughter of Bob and Suzanne Wright from Autism Speaks. 5 years old their grandson is? Someone should let them know that he isn’t a toddler anymore. I also wonder why he uses the phrase, “the Wrights’ grandson is now, perhaps, the most famous toddler with autism in the world”— my gosh that guy sounds like a suck up. Is this child supposedly better than other children with Autism? I don’t think so. I wish they would use the money they get from donations and stuff like that to help families pay for therapies that are PROVEN to work like ABA, OT, Speech etc. That’s just my opinion.

• landonsmom
  Mar 28, 2007 at 1:37 pm

  I agree w/ KC’sMommy, the money they are raising could be used to help families pay for therapy, medication, proper evaluations, advocacy training for parents so they can learn the law and many other valuable treatments, not to forget, RESPITE for those parents who don’t get any. I am glad the Wright’s are doing something, but it seems to me they want a cure, and I wonder if it is because they are embarassed by their grandson’s behavior? I am glad that more attentions is being paid to this disability, but I want it to be the right kind of attention. I don’t want to be pitied, but a little empathy would be lovely. I don’t want a handout either, but all parents w/ a child w/ autism deserve some kind of help in some form or another and to different degrees. That’s just my opinion, too.

• John Best
  Mar 28, 2007 at 2:30 pm

  Kristina, Many autistic children don’t learn or grow at all, no matter how old they get. Helping them with chelation may give them a chance to live life outside of an institution. How can any sane parent be opposed to that?

• Kristina Chew, PhD
  Mar 28, 2007 at 2:31 pm

  jypsy: Perhaps the thought is that some autistic kids—the ones that get called “severe” because they are non-verbal and “lfa”—are said again and again to be “3 years old caught in the body of a teenager.” If one hears my son—-who is showing signs of early, early, puberty—-yes he sounds as if he is babbling. But he is a 9 year old boy going on 10, and he knows what is going on.

• Kristina Chew, PhD
  Mar 28, 2007 at 2:33 pm

  Mr. Best, I presume you mean “many autistic persons,” as presumably the children you refer to grow into adults. Thank you for your observations.

• Usal
  Mar 28, 2007 at 2:59 pm

  Mr. Best,

  I’d like to see the facts behind your claim. Most of the adult autistics I know are very grown up, and many are able to function even if the world is designed to keep them from doing so. Just because the only cases that groups like Autism Speaks use to prove their point are those who received the wrong kind of help and support as children does not mean that the rest of us are unable to go to work, pay bills and raise children.

  Trust me, seeing as how I’m an adult autistic parent who owns their own home. I don’t see myself as the exception either. I also fully expect my son (who is also autistic) to be as successful, if not more, as I’ve been in life.

• John Best
  Mar 28, 2007 at 3:54 pm

  Usal, I guess you don’t know the autistic adults who live in instiutions. They will never own their own homes because nobody will help them.

• Jez Rourke
  Mar 28, 2007 at 5:15 pm

  Wow. I just read the post and not once was ABA therapy mentioned. In fact, Katie went out of her way it seemed to avoid using the term ABA.

  “His ability to attend has returned. Now he can sit and do his lessons and learn”

  To me, the phrase “ability to attend” is one I would never have known or spoken had my daughter not been in ABA programs where the phrase is used constantly. Do people outside of ABA therapy use the term “ability to attend?” If so I’ve never heard it.

  Now he can SIT AND DO HIS LESSONS…. what does that mean? I have to assume that the only “lessons” he could be participating in are facilitated by ABA therapists.

  So why be so purposely vague, Autism Speaks? Cuz I am listening.

  Clearly the child has physical issues which are being addressed which are helping to treat those physical issues which in turn are helping his overall health and well being.

  But clearly this child must be involved in some ABA programs which is not addressed at all. It is a dangerous thing I think at this point when Autism Speaks who now and forever will corner the market on where autism treatments and research and education will go do not acknowledge the role of ABA therapy. Further, since Katie Wright is who she is and chooses to speak publicly about her son, she represents Autism Speaks. When she purposely avoids the word ABA it sends a clear message on the stance that Autism Speaks takes.

  As an organization which has become the most influential autism “advocate” group they are really going to have to evolve into an organization that serves the needs of autistic people. By denying the role of ABA therapy, they are not serving autistic people very well at all.

• dkmnow
  Mar 28, 2007 at 6:27 pm

  John (at his) Best: “Helping them with chelation may give them a chance to live life outside of an institution. How can any sane parent be opposed to that?”

  Then, according to your logic (and “ethics”), John, we must try absolutely every procedure under the sun, no matter how ridiculously unfounded or potentially lethal it may be. For instance:

  We must immediately commission a study on how bloodletting might help autistic children, by the tried-and-true method of hanging them upside-down and applying leeches to their heads. If there’s the slightest chance it might help, “how can any sane parent be opposed to that?”

  Concurrently, we must conduct immediate trials on whether torture-based exorcisms of the Spanish Inquisition type might help autistic children to lead normal lives. After all, everyone knows the Inquisition was conducted entirely out of loving concern for the souls of the afflicted. “How can any sane parent be opposed to that?”

  And while we’re at it, if there may be even the slightest chance that pumping an autistic child full of rat poison just MIGHT help her to become a real human being, then we have to try, right? After all, it’s for their own good — purely an act of love on our part. “How can any sane parent be opposed to that?”

  And if the practice of endlessly repeating thoroughly debunked logical fallacies, concocting pseudoscientific defenses of unfounded (but highly profitable) “treatments,” brazenly misrepresenting anyone whose opinions you find to be inconvenient, and contriving other cheap Machiavellian rhetorical maneuvers for the sake of prejudicing unwary readers against such opinions … if such a practice might help to keep bringing you and Kirby more and more of the money and/or popularity you need in order to keep promoting your snake-oil cures, then “how can any sane parent be opposed to that?”

  Oh. Well. Never mind.

• John Best
  Mar 28, 2007 at 6:55 pm

  DKM, Your arguments to absurdity can not discredit the fact that children are being helped by addressing the mercury that ruined their brains.

• Julie
  Mar 28, 2007 at 7:16 pm

  I was not aware the it had been proven that mercury was ruining their minds. I do not feel that my daughters mind is ruined, just different. I was under the impression that it was a theory that has not been proven that mercury contributes to autism at all. To spend so much money on trying to find something to blame when it is so difficult to get the treatment that these children need is what is absurd. It is normal to want to blame somebody but I feel getting lost in this can be dangerous. It seems the money being raised for research is not helping the children that need it but helping the parents possibly find someone to blame. The stigma that surrounds autism still exists, and that needs to change so that the people that have autism and their families can be proud of every accomplishment that the achieve. I believe my daughter was born with these problems and even if she was not it does not change what we have to deal with. Spend money educating and supporting families and getting the treatments we know work to the all people who need them.

• Usal
  Mar 28, 2007 at 7:40 pm

  Mr. Best,

  Did you catch that I’m autistic? Did you catch that I’m successful in life, and I’ve not been “cured?” I’m in my thirtys, and I was autistic from birth, also my father and grandfather and so on and so on back through as far as I can find anything written about my family. Why must a few insist on blaming something for autism other than genetics? Why must so many insist that autism rates are increaing for any reason other than better diagnostic ability and an increase chance of autistics being able to succeed and have their own children (it seems that when one is autistic the odds of autistic children are way higher than normal.)

  And you still have not show FACTS to support your claim that many autistic adults are in institutions.

• dkmnow
  Mar 28, 2007 at 10:00 pm

  John Best bleats: “Your arguments to absurdity can not discredit the fact that children are being helped by addressing the mercury that ruined their brains.”

  You brought the absurdity with you, John. My first three paragraphs were merely logical extensions of your own “reasoning.”

  You can scream the words “autism is mercury poisoning” at the top of your lungs a thousand times a day for the next ten-thousand years, and even if half the world’s population comes to believe it, that still will not make it true.

  Among those “chelation therapies” that can be shown to do anything at all, the only thing that has been proven about them is the harm they do. And to this day, there is not a shred of respectable evidence that such practices address ANY symptom that can be empirically traced to autism — and NO case of autism has ever been empirically traced to heavy metal poisoning. To force such risk upon unsuspecting children in the absence of any medically supportable necessity is unethical in the extreme.

  Equally unethical is the false opposition you-and-yours offer to parents by implying that without “biomedical interventions,” their children will live out their lives as mental vegetables in institutions. Here’s a news flash for you, John: reality does not reorganize itself to conform to your faith-based assertions. But that impotence does not render your machinations benign — far from it.

  No. Owing to the “loving concern” of yourself and others, I see thousands of parents being misled and exploited by fear-mongering and false hope, when what they SHOULD be studying is atypical learning styles, communication alternatives, social construction and alleviation of prejudice, and above all, life-saving coping strategies. That’s where the real and lasting hope can be found.

  But apparently my fourth paragraph was over your head — either that, or you just can’t tolerate the notion of people learning to think for themselves. Sorry to rain on your parade, but critical thinking and sound philosophy of science will hold sway long after you and your empty zealotry have blown away with the wind.

  Tough luck, bub.

• dkmnow
  Mar 28, 2007 at 10:28 pm

  Admittedly, having written the above comments, I see now that I have confused John Best with Harold Doherty. SO, I must now consider the possibility that, perhaps, a few of my more pointed insinuations were unfair.

  Perhaps.

• John Best
  Mar 28, 2007 at 10:30 pm

  DKM, Logic seems to be a foreign tongue to you. Parents like myself who watched our kids improve with chelation have no profit motive. When that chelation allows the child to learn like a normal child, that is much preferred to hunting for alternative teaching strategies.
  Chelation would not work if mercury was not bothering the brain. The fact that it does work proves that mercury caused the epidemic.
  If you were to stop claiming that mercury does not cause autism, you might help yourself and have a more enjoyable life without a disability. And, if that ever sinks in, you don’t owe me a dime.

• Kristina Chew, PhD
  Mar 28, 2007 at 10:37 pm

  KC’s mom and landonsmom, I like the idea of the money raised going directly to those who need it—our kids—-I am in support of it being used for schools for autistic childrn or school programs within school districts, respite, afterschool programs: These are the things that, while on a smaller scale perhaps, can make the concrete differences in our lives and help so much. As you know!

  Mr. Best, I don’t know if there is any way to teach a “normal” child; teachers (this would include myself) employ numerous strategies and pedogogies, classroom environments, lesson plans, and more to help students to learn.

• Kristina Chew, PhD
  Mar 28, 2007 at 10:44 pm

  atypical learning styles, communication alternatives, social construction and alleviation of prejudice, and above all, life-saving coping strategies

  dkmnow: thank you for that list—-you note the real essentials. I’m never surprised anymore at the latest new “treatment” for autism……leeches could be next.

• daedalus2u
  Mar 28, 2007 at 10:44 pm

  I attempted to post this comment earlier, but it didn’t seem to go through, I presume because I had links in it (which I have now taken out).

  Actually, blood letting will “help” more than chelation will. The major sink of nitric oxide in the blood is hemoglobin. When you reduce hemoglobin levels via blood letting, nitric oxide levels go up.

  High blood velocity (to compensate for low hematocrit) will also increase NO levels via shear induced activation of endothelial nitric oxide synthase. That is what causes vasodilatation when you exercise.

  This is the reason that autistic individuals tend to be anemic. It is a physiological compensatory response to low nitric oxide levels.

  If you are an autistic adult, try donating blood. If you feel better, it may be that low nitric oxide is what is making you feel not as good as you could otherwise feel. There is a chronic shortage of blood anyway and everyone who can donate should. (good and good for you)

  If any child or adult, autistic or not has elevated mercury, they should undergo chelation. The way to determine if there is an elevated level of mercury is to test for it. Testing for mercury is cheap, reliable and uses minimally invasive specimens.

  If testing does not show an elevated level of mercury, then an elevated level of mercury is not present. The delusion that mercury can be present and undetectable is a delusion which has no basis in fact. I have a recent blog about it (at daedalus2u (dot) blogspot) which discusses in great detail the physiology of mercury and why the “mercury causes autism” idea is not a hypothesis, in that there is no data which supports it, and plenty of data that proves it to be false. It is a belief akin to the belief that the world is flat, or that the Sun goes around the Earth, or that the Earth is a few thousand years old. A belief that has no basis in fact.

  My hope is that the false idea that mercury causes autism can be abandoned, so that the real cause(s) of autism can be found.

  If Mr. Best thinks there is data which supports the “mercury causes autism” idea, let him post a link to it. Note I said “data” which “supports” it, not conjecture, not hypothesis, not anecdotal statements, not urine challenge tests showing 1 microgram excretion, not dire predictions of doom, not weird animal experiments, not testimonials of those who profit from it.

  If so many children have been “cured” of autism via chelation, why is there not a single published case showing elevated mercury before treatment, and then resolution of autistic symptoms coincident or following a lowering of mercury via chelation.

  Note it was Mr. Best, who first characterized individuals who would not chelate their child as “not sane”.

  To Mr. dkmnow, I believe they are conducting trials using torture as a “treatment” for autism. Please see the recent blog by autism diva.

• Usal
  Mar 28, 2007 at 10:53 pm

  Mr. Best,

  You still seem to miss one of the main points being made here…

  Mercury has not been proven to cause autism

  And when you consider that I was born in 1972, there is no way my vaccines contained enough mercury to make me autistic. Or my father who was a child in the 50’s, or my grandfather and great-grandfather who were both children before vaccines. Your proof is not supported by the evidence seen just from looking at me and my family.

  Education is more important now than crusades of laying blame.

• landonsmom
  Mar 28, 2007 at 11:43 pm

  I think it is great IF a type of treatment, like chelation, has a helped a child or even more than one child, however, not every treatment is good for all. My son was autistic from birth, he has been tested for high levels of mercury and none were found, so I know that vaccines did not cause his autism. I may never know what caused it or how to “cure” it, and I am going to have to be ok with that if I am going to help him be successful in life. I will NOT waste his time on this earth trying every new treatment that becomes available. I know that there are many parents who believe that mercury caused their child’s autism and I respect that, I also ask that in return you respect the parents that don’t believe that is the cause of their childs’ autism. I know my child best and no one but me knows his history or pattern of behavior. Just as cancer has many causes, I believe so does autism, there is the genetic factor and of course environment, of which there could be many factors to consider. We may never know the actual cause and we shouldn’t waste time arguing over it, but we should use the time wisely. In my opinion that would be to promote effective, early diagnosis, early intensive intervention and supports services for parent and child and of course increase awareness to the public.

  If one group of parents pushes to be heard over the other group then who loses out?

  I’ll tell you who……the children who are effected by the autism and have to live with it for the rest of their lives and so do the parents or other caregivers. Without effective treatment, whatever that may be for each individual child, it is the rest of us “normal” people who will be left with the responsibility of caring for these individuals because they didn’t receive the treatment THEY needed. Is it possible to entertain the idea, that treatment, much like IEP’s need to be specific to the child? What works for one, will not necessarily work for the other.

  We should not be selfish with our “cause” but use the zealousness and determination that we have as parents to ensure that ALL children with autism, regardless of what caused it, get their needs met.

  I agree with Usal’s last statement in the previous post:

  “Education is more important now than crusades of laying blame.”

  The autism community needs to come together and be unified, regardless of what each parent believes caused their child’s autism, it is through this unity that we can ensure that our children get the services they need.

• Chris
  Mar 29, 2007 at 12:08 am

  MY EXPERIENCE is when I tested my son when he was banging his head into the walls and did not acknoledge us or his name when we called, his Right Brain Development was behind. His blood tested high is several things. I started doing some sign language with him, I started adding whey protien to his diet, because the brain needs good fats and protien. I started doing physical therapy to re-build his RB. I massaged him more on the left-I walked holding his left hand, I read or played sitting to his left. I Pulled on his joints and worked on his feet. I had him cross his arms across the mid-line. BUT THE MOST IMPORTANT THING I DID WAS DETOX HIM WITH CLAY MUD BATHS. I just kept thinking, this kid is toxic, he has a reaction to everything, and if he was born with a pre-disposition to be INTOLERANT to medals and chemicals, and does not excreat them normally, then they are sitting in his brain. SO I FIGURED I SHOULD DETOX HIM. I as a massage therapist knowing the skin is the largest organ, I have given people detox wraps for years, I have seen people detox and vomit when they get up because of detoxing. I visually did not want to detox him internally for fear of hurting his internal orgins, so I figured the worst side effect for him with a bath would be dry skin. Which gave me more reason to give him a massage. THIS IS ONLY MY EXPERIENCE but I can tell you each day my son checked in. It started with a few moments, and then it went to minutes. In 3 months it was for atleast 3 hours. 6 months later we had him most of the day. In January we would say, OH he is checking out. It was happening when things were overwhelming, and he got tired, or frustrated. It has been 9 months and he, is a different boy. He still has tantrums, but we are able to still connect during them. He is talking in full sentences most of the time. He asks questions, he now tells us he when he has a boo boo. GEez the other day he fell and banged his groin on the bedrail. A. He cried. B. He let us give him ice. C. He still could not tell us what happened, or let us look at it, but he could point and say oowee. D. Tonight when I was helping him to bed, he stood up and said, Owwee LOOK! He pointed to his balls, and said ALL BETTER and smiled. Come on, It does not get batter then that, for me! I am looking forward to summer, I will start detoxing him again, I figure he is exposed to toxins in food and everywhere, and I still do not believe he processes them right. So I will attempt to clean out his system again. I am not a medical DR, but does anybody else do this, or had this kind of results. Aidan has never been in ABA, only what my husband and I figured out and at the beginnig of the school year his pre school teacher has started teaching us RDI. I think RDI has also contributed so much to his success so far. Does anyone else do or know RDI too. I am limited on what we are exposed too. Also Usla you are amazing. Please tell me when or how old were you when you were aware of your autism. And do you see it as or do you see it as a dissabiility now for you. And when you were aware of it, did you see it as a dissability then?

• Club 166
  Mar 29, 2007 at 1:02 am

  Daedalus2u:

  Couldn’t let this pass-

  Actually, blood letting will “help” more than chelation will. The major sink of nitric oxide in the blood is hemoglobin. When you reduce hemoglobin levels via blood letting, nitric oxide levels go up.

  OK, that makes sense, if you’re referring to free NO, not total body NO. I’m not aware of studies quantifying total body NO, actually.

  High blood velocity (to compensate for low hematocrit) will also increase NO levels via shear induced activation of endothelial nitric oxide synthase. That is what causes vasodilatation when you exercise.

  OK.

  This is the reason that autistic individuals tend to be anemic. It is a physiological compensatory response to low nitric oxide levels.

  Uhhh, where do you get that from? First of all, I haven’t seen a lot of evidence that autistics tend to be anemic. And even if they are, the few studies I’ve seen point to iron deficiency anemia. What is the mechanism for this to be a response to low nitric oxide levels?

  Furthermore, if autistics are deficient in NO, then why aren’t they also more susceptible to things like COPD? I haven’t seen any evidence of that.

  I think it’s great that you don’t swallow the mercury poisoning hypothesis, and NO may have something to do with autism (as you state, it’s involved somehow in just about everything we do), but I think it’s way premature to start talking about it being a cause of anything in autism.

• Zaecus
  Mar 29, 2007 at 3:13 am

  Mr. Best et al,

  I realize that what I’m about to write brings up the uncomfortable possibility that you may be harming your children, and for that reason, you may have to disregard this in order to protect your psyche, but I write it in the hopes that, eventually, someone may start asking the important questions that will stop so many people from treating autistics as, in a very real sense, less than human.

  “When that chelation allows the child to learn like a normal child, that is much preferred to hunting for alternative teaching strategies.
  Chelation would not work if mercury was not bothering the brain. The fact that it does work proves that mercury caused the epidemic.”

  There are two very important errors here, and thought Mr. Best has given me the opportunity to so succinctly point them out, he’s not the only one making them.

  The first error is that “treatment x” was effective based on anecdotal evidence. We humans love patterns, and autistics are certainly no exception to this, but I have certainly noticed that I have to be careful when identifying a pattern that I’m not mis-identifying it. Just because one thing follows another does not automatically mean that it was caused by what it followed. If a 92 year old man suddenly dies after switching to a healthy, balanced diet, it’s probably not the diet that killed him, but it could certainly seem like it if there wasn’t something simple, like his age, to give an alternate explanation.

  All children benefit from parental attention, and one thing that all autistics who are diagnosed early get is an -abundance- of parental attention. I’ve seen similar results touted for a variety of ‘interventions’, and always overlooked is the most important intervention of all; the parents are focused intensely on their child. The only way to disprove that this is actually what’s causing the result is to have the parents ignore the child during whatever ‘treatment’ is tried, but that would–as I hope everyone sees–be abusive.

  The second error is, for me, the most important. It’s a common enough belief that it can be summed up in one sentence, “The end justifies the means.” Just because something is simple and appears effective is -not- a good reason to use it in favor of looking for truly effective, long term methods that are positive and productive for everyone.

  In this case, it’s the first sentence I quoted above; chelation is preferable to expending effort toward finding alternative teaching strategies. As was already said, alternative teaching strategies are employed for neurotypical children by (good) teachers in (good) schools. It is the rigidity of our education system that makes employing these methods difficult and undesirable, but they are desirable, and I feel -necessary-, for everyone, not simply autistics.

  Failing to look at what might be the short comings of a ‘treatment’ or ‘therapy’ just because it seems to work, or even if it has been -proven- to work, is never a good idea. Without looking at these things, we may never understand the flaws much less come up with better methods that correct them.

  I know this may be emotionally loaded, but eliciting emotions isn’t my intent, and the precedent for saying this this way has already been established in this comment thread. I hope this will illustrate most of my readiness to object to the zealous faith put in any treatment or therapy that supposedly helps correct broken children, or even supposedly broken parts of children.

  Various training techniques have been employed in a great many areas for a great many reasons, but the one place that, I believe, all of them have seen use is the military. Some of these techniques are still used today, and even without war, soldiers often have difficulty acclimatizing to civilian life. Others, however, have been determined to be truly damaging even though they achieved their intended purpose, turning a human being into a capable, obedient killer.

  Just because these techniques–now often referred to as torture, brain washing, and programing–were effective for their intended goal, does not mean they were ever good. Just because you change the goal and tone the methods down, does not suddenly make them good.

  My hope is that, someday, we can accept that even those things now thought of as problems might be assets if considered in a different light and given an environment where they can be effective. It’s also my hope that we can look at sudden changes in childhood, or even adult, development as opportunities to explore what might be best for the person without any ‘baggage’ about what might be best for society because I truly do believe that what is best for the individual can be best for society and those circumstances where this isn’t true will readily reveal themselves without having to protect society at the beginning from the possibility of someone simply being different.

• John Best
  Mar 29, 2007 at 6:57 am

  Daedalus, There are lots of published cases of cured kids who had high mercury. They may not be published in scientific journals who live off of drug company advertising but, they are published nonetheless. Your best bet for finding these accounts is at the Autism Mercury Yahoo group.
  Your flat earth analogy is flawed. It is those who cling to the false notion that there is no known cause or cure for autism who are unwilling to accept new knowledge.
  When children are being cured by a new treatment, it does not make sense for any parent to protest that treatment. A reasonable response would be to ask how it works or why it works. But, to call parents liars who attest to these cures makes no sense whatsoever. I can understand some with Asperger’s who think they are intelligent and don’t want to be changed. Detoxing yourselves could only add IQ points. Taking poison out of your brain is not harmful.

  Kristina, Has anyone cured a severely autistic child via teaching? I don’t think so. Teachers can only hone skills if children can pay attention. I never blamed the teachers when my son showed zero progress for his first 6 years of school. It was a complete waste of time and effort. Once we removed some of the mercury, he was able to pay attention and learn. One would think every teacher would be happy that this method of addressing the cause of the child’s problems helped the child and made the teacher’s job a lot easier.

• daedalus2u
  Mar 29, 2007 at 7:14 am

  There are no studies that quantify total body NO, it isn’t something that could actually be done. NO is a local phenomena, local to the cell/cell organelle that is being regulated by it.

  The focus of my work is basal NO, that is, the level of NO that is present before nitric oxide synthase is activate, the NO generated diffuses some distance, and then activates a downstream cascade of events. NO is freely diffusible, and each “NO sensor” “measures” the sum of NO from all sources, minus the NO destroyed by all sinks. The basal level has an effect on all physiological processes regulated by NO with no threshold. That is, because NO is already being used as a physiological control signal, it is already in the “active range”, so any change in the level affects the output of what ever is being controlled.

  There is lots of “cross-talk” between the various NOx species, including NO, nitrite, ntirate, S-nitrosothiols, N-nitroso compounds, and so forth. NO physiology is extremely complex, and it is not something that anyone really understands. There are thousands of pathways that involve NO, including lots of transcription factors (i.e. the 900 Zn finger transcription factors). Essentially all of the NO regulated pathways are “coupled”, that is, you cannot affect one without affecting others. In some ways this is very good, because that is how physiology keeps every different physiological pathway working “in sync” with every other pathway. But it makes differential regulation of those pathways by pharmacological intervantion difficult if not impossible.

  There is considerable thought, that the major health benefits associated with consuming green leafy vegetables comes from the nitrate they contain, a few tenths of a percent.

  To many doctors, anemia not a consequence of low vitamin B12 is virtually synonomous with iron deficient anemia. Not every cause of anemia is understood, all the regulatory pathways involved in regulation of hematocrit are not understood. A major symptom of kidney failure is anemia. With Epo, hematocrit can be raised to any level. People in kidney failure who have their hematocrit raised to “normal” have a higher death rate than those with a lower hematorcrit. I suspect that is due to lower NO from higher hematocrit. I suspect that the low hematocrit of kidney failure is a “feature” that increases NO levels and prolongs life (but in physiology, everything is a trade-off).

  Epo is expressed under the control of HIFa, which is regulated in part by NO.

  Some of the major neurological symptoms of ASDs have to do with neural structurs that develop in utero and early childhood and are then essentially fixed. NO is important during neural development, but once the anatomy of the brain is fixed, only modest changes can occur via increased NO.

  If you raise an ASD adult’s NO level, you won’t “cure” them of the ASD. The neural structures can’t be modified sufficiently. But you will make them feel a lot better, and have much better functionality.

• daedalus2u
  Mar 29, 2007 at 7:33 am

  Mr Best, I have read much of what is on the Safe Minds website. I have found no “data” that presents a case, let alone a compelling case. I find lots of paranoid ramblings, explaining the lack of any publications in the scientific literature as due to a conspiracy by the pharmaceutical industry (as you have just implied).

  I don’t know which is worse, your delusion that mercury causes autism, or your delusion that everyone who doesn’t agree with your delusion is an evil monster out to damage childrens’ brains to save a few pennies?

  I presume that those pushing the “mercury causes autism” idea have tried to get their “data” published. Unfortunately the “data” that has been published is of poor quality, and doesn’t show what they proport that it does.

  If an individual does not have an elevated blood mercury, they do not have an elevated brain mercury.

  Maybe chelation is doing “something”. It can’t be taking out mercury because mercury is not present. Maybe it it taking out kryptonite? Has kryptonite been found? Maybe autistic children are “non-excreters” of kryptonite? An anectdotal result of resolution of some symptoms of ASDs following chelation without assaying levels of metals before and after doesn’t show there was heavy metal toxicity that “caused” the ASD, any more than it shows that kryptonite caused it.

• Kathy
  Mar 29, 2007 at 8:18 am

  Maybe it was just a developmental thing John.

  Your son may have been ready to learn.

  Irespective of whether he had been chelated OR NOT.

  Anyway , you have no proof to the contrary!

• julie
  Mar 29, 2007 at 8:59 am

  If there was a cure wouldn’t every doctor in the world be suggesting this to their patients. I know that drs are scientists so if there was proof the mercury caused autism and the chelation would cure them than why have not all developmental pediatricians sent their patients for this. The answer is that their is no proof. I respect that you belive that it helps and I can not argue that because I do not know your child. I do know that as a whole the medical community wants to help our children NOT be sick. That is why they vaccinate in the first place and treat them with antibiotics when they are sick. I know from personal experience that I am prone to hear and believe what I wish at times. My oldest was born with spinal menengitis and at the time I wanted him to come home and be off the monitors so when the dr said that he was doing well, I heard and believed that he did not need his IV anymore and could take him home. I wory about anybody who believes and tries to convince other parents who are going through a stressful time that there is a quick fix. It is a developmental disability and until they prove with scientific studies otherwise I believe that is how it should be treated. Mr Best I am glad that you have seen improvements with your child but please do not try to insist that everyone believe the same non proven theory as you.

• John Best
  Mar 29, 2007 at 9:16 am

  Kathy, The fact that no learning took place for my son’s first 8 years would lead any rational person to label him a vegetable and prepare to institutionalize him. The fact that he did begin to learn after starting chelation demands that one accept the fact that the chelation helped his brain to function better. So, yes, I do have proof. Arguing against that proof certainly does not help any children, does it?
  I used all of the methods that Kristina favors. They were of no use with this severely disabled child. Now, those methods are working because there is less mercury in his brain. Arguing against removing a toxic substance from children’s brains doesn’t make much sense, does it?

• John Best
  Mar 29, 2007 at 9:31 am

  Daedalus, I know I’ve told you this before but you really should confront Andy Cutler with this stuff so he can hand you your head on a platter if he feels like taking the time to educate you. Mercury leaves the blood in a matter of days but can remain in the brain, kidneys, liver and intestines. That’s why chelation also heals the gut as it did for my son. You’re just making up your argument and using some terms that I probably won’t understand in an attempt to “snow” me. It won’t work because I’ve seen the proof with my own eyes. I know that everything Andy Cutler says is true. He helps children. You do not.

• dkmnow
  Mar 29, 2007 at 9:48 am

  John Best: “…any rational person…”

  John, this is exactly what I meant when I alluded to the use of prejudicial language.

  Your statement is a classic case of verbal violence, and almost a textbook case of one of the “Satir modes”:

  “ONLY someone who is [x] would say [y].”

  Disgusting. It’s right up there with “IF you REALLY loved me, you wouldn’t [x].”

  It is a brazen manipulative tactic, designed to belittle your “opponent,” silence honorable dissent, and prejudice anyone within earshot against any point of view that does not affirm your own.

  It is an attempt to USE others — that’s why it’s referred to as verbal violence. In formalized discourse, it is considered fallacious, and in civilized debate, it is considered dishonorable.

  More important, such self-serving manipulative behavior on the part of caregivers is the single most pervasively damaging social hazard that autistics face — it is the single greatest purveyor of devastating psychological HARM that threatens the long-term emotional development of autistics today.

  If it has ever occurred to you to wonder why so many adult autistics find your rhetoric so utterly intolerable, John, THERE’S YOUR ANSWER.

• landonsmom
  Mar 29, 2007 at 10:04 am

  I whole-heartedly agree with the previous post by dkmnow, Mr. Best, it seems more and more obvious that you are trying to manipulate other parents into believing that the treatment you chose for YOUR son is what is needed by all children who have autism. Your obvious guilt tactics are reprehensible to me as a parent of a child with autism. This kind of behavior from a caregiver is not proper, moral or ethical. I don’t believe you are even qualified to make those kinds of assumptions, since I don’t see an M.D. or some other indication of a degree behind your name, but even on the small chance that you do have some kind of degree that you feel makes you qualified to make this kind of statement, most good doctors would not prescribe ANY treatment for ANY TYPE of child w/out first knowing that child’s case history.

  The type of person you seem to be, as I am reading your posts, is one who likes to bully and guilt other individuals into your way of thinking. You could possibly cause harm to another child if you influence another parent to believe the way you do. I have parents, in my community, who come to me for advice and help and I stay very neutral on what I give and let them decide for themselves, it is not place to tell them that “ONLY this treatments works” or this one….that would be very arrogant of me, indeed.

  Perhaps, you should remember something that I have to remind myself of daily:

  “You can catch more flies with honey than with vinegar” and right now, Mr. Best you are spewing a lot of vinegar.

• Club 166
  Mar 29, 2007 at 10:05 am

  daedalus2u:

  The optimal hematocrit level in renal failure patients is yet to be determined (IMO). Certainly there is much less mortality in patients who have their hematocrit raised to at least 30%, as also there is no benefit from hematocrits raised above 40%. In between lies a gray zone where optimum balance of factors needs to be decided.

  The idea that neural structures are essentially fixed, and that no plasticity takes place after about the age of 3 has been challenged somewhat recently. While this concept may be generally true, there is a lot of work that suggests that significant changes take place after this, and that significant learning takes place throughout life.

• John Best
  Mar 29, 2007 at 10:05 am

  DKM, There’s no verbal violence here, LOL. Your making that claim is an argument to absurdity.
  Why don’t you try sticking to the point and explain why any sane person would refuse to help an autistic or otherwise disabled child? You can’t do that so you opt for argument ad hominem and character assassination.
  You are talking about high functioning people while I am talking about severely disabled children. Two distinct categories. Why do you wish to confuse the issue?

• julie
  Mar 29, 2007 at 10:35 am

  It is important to include everyone with autism in the discussion high functioning and severly disabled. One is not more or less autistic than the other. You are not hearing the response you want to your question so you are assuming that it is not being answered. No one is saying that we do not want to help everyone with autism. What is being said is that until it is proven that it works we are not going to use it. Your experience with your child is not scientific proof of anything. It is a personal experience. There has been no proof of mercury causing autism or that chelation helps. Just parents who say that it does. If you feel that it has worked for you great that does not mean that everyone has to agree or that if they do not agree with you that they are not wanting to help autistic individuals have the best life that they can. I personally feel that attitudes that are looking for a cure or quick and easy fix lead to a mentallity where the ends justify the means and cause parents to consider treatments that could be considered abusive because they want to believe that they can FIX the problem. That is my opionion and experience that does not mean that you have to agree. If we had some real research in autism and better help in getting the treatments to children early with family support I believe that would be best in helping people with autism not trying to prove that the way a few think is how everyone should.

• dkmnow
  Mar 29, 2007 at 10:37 am

  Why do I feel like I’m being lectured on “ethics” by Joseph Goebbels?

  John, I’m not even convinced that you know what argumentum ad hominem is. I rather suspect that you think of it as yet another one of those clever little things for throwing in people’s faces when you’re not getting your way. Such a view would easily square with your constant reliance on red-herrings, straw man arguments, anecdotal evidence, and the whole catalog of other classic logical fallacies.

  Do you know what observer bias is? How about availability heuristics? Do you know how to distinguish between correlation and causation?

  From where I stand, your grasp of “logic” seems to come from having once watched a few episodes of Star Trek, and I can’t help but wonder if you recently saw the phrase “argument to absurdity” in a brochure and take endless joy in repeating it, regardless of context, cuz it makez you look kewl.

  As for the charge of verbal violence, your drivel here and elsewhere absolutely reeks of it, but I need only cite your second paragraph above — it is yet another textbook example of Virginia Satir’s “distracter mode.”

  Next?

• julie
  Mar 29, 2007 at 10:43 am

  To clarify are we to assume that autism speaks the largest autism research and advocacy group has picked a side in this debate. and that side would be one that is based in not fact, just personal experience and opinion.

• John Best
  Mar 29, 2007 at 11:00 am

  DKM, Read what you just wrote. Did you do anything besides knock me with nonsense? Did anything you said answer the quetion of why anyone would refuse to help an autistic child?

  Julie, Adults with HFA can generally function to some degree. Children who can’t speak, read, write or do anything for themselves are not similar to those adults. They need different treatment. Lumping these two distinctly different categories together does not help either one of them.
  I do not berate you for helping your child by whatever means you see fit. Why do you think it is appropriate to knock what I do for my child? I let people know that it works. Why do you try to say it won’t work when you have not tried it and do not know?

• julie
  Mar 29, 2007 at 11:10 am

  First of all I do not feel that I was knocking what you decide to use as treatment all that I am saying is that saying that it works as though there were proof outside of your experience can be dangerous. I do not blame you for using a treatment that you feel has helped. I do believe that trying to convince other parents that this is a treatment that will help their child is wrong. If there were proof as with other therapies than that would be one thing. You can choose to use this if you have found it makes a difference gret as I said before just relize that this is your experience and not proof of anything. Treatment is something that is a personal decision and needs to be respecteded. I just would like it to be said as it is. There is no scientific proof that mercury causes autism and that chelation helps. If your experience is different than fine. Every child and person with autism needs to be looked at as a unique individual but that is no different than with the general population. The fact that they have all been diagnosed with autism already puts them in a catagory together and each posses its own challenges, and rewards.

• John Best
  Mar 29, 2007 at 11:16 am

  Julie, Over 7,000 people at the Yahoo group Autism-Mercury disagree with you. I’m just one of the more vocal ones.

• julie
  Mar 29, 2007 at 11:18 am

  Disagree with what? It is a fact that there is no scientific proof that mercury causes autism or that chelation helps. That part is not an opinion. If they disagree with me saying that everyone has the right o choose treatment for their children I would like to know why.

• daedalus2u
  Mar 29, 2007 at 11:32 am

  I absolutely agree that the “optimum” hematocrit in kidney failure is yet to be determined, no doubt it is idiosyncratic. That is, the “optimum” may well be different for different individuals. I have no idea how to measure that experimentally. I don’t think anyone does. Arbitrary assignment of a certain level may be too high, or too low, either of which may lead to earlier death.

  I agree that there certainly is placticity in neural structures, otherwise learning could not happen, and there could be no recovery of function from strokes. Nitric oxide is intimately involved in neurogenesis, axon targeting, synaptogenesis, long term potentiation, and many other aspects of neural phsyiology. The “right” level has to be critically important in all of those things.

  Mr Best, I have read some of Andy Cutler’s work, and agree with it. A PubMed search on Cutler and autism finds no papers mentioning mercury. I very much agree that oxidative stress is associated with ASDs. A state of oxidative stress is necessarily a low NO state, and a low NO state is necessarily a state of oxidative stress. His work actually confirms my low NO hypothesis.

  If you do not understand the terms I use, you should look them up and attempt to understand them. They have meanings that are specific and precise. They are not “made up”. Until you do understand them, you will not understand what I am writing. Congradulations, that you feel your eyes are able to detect and quantify mercury at the PPM level. Forgive me if I prefer to use instrumental measurements of such things like everyone else.

  Mr. Best, I am not sure I understand your point. Are you saying that you are not a “rational person” because you did not institutionalize your son? I think we can make our own judgements based on how you mobilize facts and arguments to support your position.

• Club 166
  Mar 29, 2007 at 11:37 am

  I disagree that everyone has the right to choose any treatment for their child. If a treatment is equivocal, that is, has not been proven to be either helpful or harmful, then I would agree.

  But when a treatment has definite serious risks (as chelation does) then in the absence of proven benefit that justifies those risks, I have a big problem in anyone trying to justify administering those treatments. Parents have a duty to protect their children, and to not do them harm. I don’t think it’s right for parents to provide possibly harmful treatments to children (without proven benefits), and I especially fault medical practitioners who would do this. When medical practitioners do this, I think they should be sued for malpractice (not surprisingly, when harm comes to patients after being chelated for autism, they are).

• dkmnow
  Mar 29, 2007 at 11:46 am

  John Best: “DKM, Read what you just wrote. Did you do anything besides knock me with nonsense?”

  I just read your latest hit-pieces on Amanda Baggs, Estee Klar, and Kevin Leitch — and in those irredeemably malicious attacks, everything I have said about you here was borne out in stark relief.

  Except for one thing: I have been FAR too charitable in my evaluation of your behavior.

  “Did anything you said answer the quetion [sic] of why anyone would refuse to help an autistic child?”

  There is no answer to an invalid question except to dismiss it. Your “question” is just another Machiavellian ploy, based on a morass of faulty premises and insincere intentions.

  No one in this crowd — even among those “neurodiverse” advocates you take such joy in maligning — NO ONE has ever claimed or even implied that “autistic children should not be helped” Now, you know that, Mr. Best. But what you cannot tolerate is that so many people refuse to acknowledge that most of what YOU advocate qualifies as help at all — or they have exposed your pet “therapies” for what they really are: ABUSE.

  You “question” is utterly irrelevant to the issue I have undertaken to discuss here: namely, your own shamefully irresponsible misuse of rhetoric, and your constant deliberate and malicious misrepresentation of people you know nothing about.

  Mr. Best, misrepresentation IS verbal violence — and in many contexts, it is a CRIME.

  Make no mistake, Mr. Best, my contempt for you is not the least bit gratuitous.

  You’ve EARNED it.

• John Best
  Mar 29, 2007 at 11:50 am

  Julie, Those 7,000 people know that mercury caused the autism epidemic. They know this beyond a shadow of a doubt as they watch their kids recover. They accept the proof that you simply refuse to acknowledge.

• julie
  Mar 29, 2007 at 11:52 am

  Of course the treatment would have to be proven not to harm. I am not that familiar with the harm caused by chelation. I do know that there are a lot of therapies and treatments being used for autism that are harmful, such as shocking a child when they have undesirable behavior and I find that to be torture. I would just like the parents who believe that there children were poisioned to stop saying that they know this, since it is not proven and as far as I understand the studies that have been done actually prove the opposite. I know it is easy to want to blame somebody for this, and also part of the process that everyone goes through. I just hope that these parents focus on the child and how best to help them rather than trying to fix or cure them. Autism has been around for many years before vaccines were and will be around after mercury. The increase has to be looked at in respect to how well it is being diagnosed now. 10 years ago my daughter may not have met the very strict guidlines to fall into the autistic diagnosis and today we know better. Education is always the most important part of solving anything and that is education that is based in fact and not hysteria and the need to find someone to blame.

• John Best
  Mar 29, 2007 at 11:53 am

  DKM, Klar, Leech and Baggs have earned every word I’ve said about them. And, again, none of your insults answer my question. Time to go play the horses. Talk to you all later.

• dkmnow
  Mar 29, 2007 at 11:56 am

  John Best: “Julie, Over 7,000 people at the Yahoo group Autism-Mercury disagree with you.”

  This statement is a classic example of the logical fallacy known as “argumentum ad populum“.

  A corollary example would be the advertising ploy, “Fifty million proud Ford owners can’t be wrong.”

  As counterargument, I’d like to ask you how many millions of German citizens once truly believed that Hitler’s policies were moral and noble.

  Do you still think you are in any position to impugn other people’s logic, Mr. Best?

• julie
  Mar 29, 2007 at 12:00 pm

  If you know that and have proof than where is it and why has it not been published in a medical journal. You are choosing to believe this because it makes you feel better to have someone to blame for what you are having to deal with. If you have found your child is getting better than great. To say that autism is and epidemic implies that you can catch it and that is not the case. It is on the rise and certainly is getting a lot more press which is good. The rise has to be looked at in conjunction with the new guidlines for diagnosing autism. I would love to see the studies that prove that mercury causes autism. I am not choosing or not choosing to aknowledge anything. I just relize that those are personal accounts and can not be taken as proof af anything. You are confusing fact with personal observation and they are two very different things. If you can direct me to some scientific study than that would be great until then I will continue to believe that autism was around before mercury will be around after mercury and we have just gotten better at understanding it and diagnosisng those who have it. That is fact.

• landonsmom
  Mar 29, 2007 at 12:29 pm

  When there are many more thousands of people who have been diagnosed with autism than the 7,000 mentioned by Mr. Best I find it hard to believe that such a small percentage should try to “dictate” to me what did or did not cause my son’s autism. As I said before in a previous post, he has been tested for high levels of mercury and NONE were found. So for me, that is proof enough that mercury did not MY son’s autism.

  Early in this debate, Mr Best asked the question “How can any sane parent be opposed to that?” …..Mr Best you did NOT confine that question to the parents of severely autistic children and by not doing that you imply that ALL children with autism can be helped with chelation.

  Furthermore, much of the reason, but not all, that there are adults w/ autism living in institutions is because for many years that is all the doctors knew to do with them. There was no ABA, Floortime, TEACCH, or other specialized therapies or treatments available because the common consensus was that they were untreatable. Now, we find that not to be true.

  The theory that there is only one treatment or one cause for autism is preposterous to me and many other parents who just don’t want to buy into every possible notion there is. I believe everyone here has tried to respect your opinion on what worked for YOUR son, Mr Best and in return you should respect that we willl not be bullied or manipulated into believing that chelation will work for our children. To do that, I believe, would be a mistake on my part, that could harm my son.

  Unless, the Journal of Medicine comes out with a study that proves chelation works with all children with autism or the American Board of Pediatrics, then I will not believe that it is a viable treatment for MY son, just as I choose not to believe the notion of “refrigerator mothers” as the cause of autism, which is a notion that has been done away with for many years……..chelation may go the same way.

  Fact is, no one knows for sure what causes autism and to waste time discussing it, is to waste the time a child has to learn, grow, and progress.

  Mr. Best, I can assure you, as a sane parent of a child with autism, if they find a cure or treatment that works with 100% success in all children with autism, I will be the first in line to get it for my son.

• julie
  Mar 29, 2007 at 12:36 pm

  Landonsmom well put. he more we learn and educate families hopefull the less need there will be to put autistic adults in institutions.

• landonsmom
  Mar 29, 2007 at 12:49 pm

  To Julie,

  Thank you.

• daedalus2u
  Mar 29, 2007 at 1:53 pm

  Actually Chris’s experience with clay may be due to nitric oxide.

  The bacteria I work with are found everywhere, even in clay and mineral waters. They are motile, and it isn’t a streach to think that in a mud bath, they might swim to the source of ammonia, the pores of someone immersed in that mud.

  But the therapeutic benefit of a mud or clay bath might be greater if the mud were only lightly rinsed off (or even not!), not scrubbed off with soap or detergents.

  Exposure to heat also causes up regulation of nitric oxide synthase in the skin, that is what makes the skin flushed, it is the vasodilitation due to NO being generated in the skin.

• Usal
  Mar 29, 2007 at 2:54 pm

  Chris,

  I was 34 years old before I was diagnosed. I’d suspected that I’d had it four about a year or two before then. Prior to that I spent most of my life not knowing why I was different from everyone else and putting much energy and effort in trying (unsuccessfully) to pretend to be like everyone else. When I told my mom, it quickly occurred to her that I’d shown signs of it almost immediately after birth, but my father had been the same way, and so had my uncle, so everyone on both sides of the family thought I was normal.

  School was a different story. I had few friends, was often bullied by both my classmates and teachers until about the 8th grade, at which time the bullying became less, but did not stop completely. When I was younger I was tested and several attempts were made to label me as “retarded” and get me placed into a class of kids that were considered “hopeless.” I was label like this because of how I acted, it did not matter to them that I was the smartest kid in my class, or that I was reading at an adult level before the third grade.

  I’ve never seen myself as disabled, I’m just different. What makes the differences disabling is how the rest of the world reacts to me. If the world was arranged to accomodate autistics, then non-autistics would find functioning difficult and stressful. One way to describe it is I’m one of the square pegs, but the world is full of nothing but round holes, if you force me to fit in one of those holes it will hurt me, but if somehow a square hole is found, or made, for me, everything is fine.

  Being autistic is not a bad thing, it’s just a different way of seeing and interacting with the world. I often see or think of things that those around me would never even consider. It can sometimes be difficult to have to spend so much energy trying to remember all of the little social rules that non-autistics know without having to be told, and it hurts when others get mad at you for not knowing something or not remembering and believes you did it on purpose.

  And honestly, it’d be so much easier if others realized how important stims are and didn’t treat autistics like non-humans for needing to stim in public. So what if I don’t make eye contact most of the time, I’m still listening. So what if I’m rocking back and forth in a crowded restaurant, it’s better than having a 6′ tall autistic go into meltdown because the place is too bright and noisy. So what if my movement is not smooth and fluid, I could try to appear to be, right up until I ran into something, or someone.

  The point is, being autistic is only a disablilty because of how others treat you, and how others arrange the world you have to exist in. It has nothing to do with anything wrong with being autistic. But being autistic can make other disabilities more disabling than they would be alone, and I bet that if we took a look at some of the “adults” Mr. Best referred to we’d find that there is more going on with them than just ASD.

• Usal
  Mar 29, 2007 at 3:02 pm

  Mr Best,

  I think it very telling that as soon as I pointed out that I’m one of a long line of very autistic people within one family, you stopped trying to prove me wrong or twist my words. Instead you’ve started to ignore me.

  So either you are in the habit of ignoring FACTS that disagree with your world view, or you are the kind of person that assumes that autistic people are non-human and therefore are unable to think or care for themselves. Either way you’ve proven to me at least what kind of person you are and I truely feel sorry for your son. Hopefully he comes out of childhood and into adulthood without too much scarring.

• John Best
  Mar 29, 2007 at 3:51 pm

  Usal, If you were in your thirties when diagnosed, you were not a train wreck as a child. That means you have nothing in common with autistic kids who can’t do anything for themselves. Since thimerosal began poisoning us in 1931, you can probably trace your family history to that.
  Maybe you should not have any diagnosis. Maybe you are just strange.

• Chris
  Mar 29, 2007 at 4:02 pm

  Usal

  Thanks for letting me get to know more about autism, from the perspective of someone with it. You know just because I choose to detox my son with llclay mud baths, and it seems to have helped him focus, answer questions, play, interact with friends, and really want to connect with us, does not mean he is still not autistic. I hate it when people say to me, is he always going to be this way? Mud baths just make sence to me. I think it is interesting that autism has runs in your family, and you all have learned to manage and grow, and have relationships. That is great to here. BUT—I do see that in todays world, there are so many things that aggitate the symptoms and compound the sensory, allergy, melt downs that we see alot of today, and that is why everyone thinks this is a new epidemic. I can look at myself and my family tree and pull out all kids of things from add- to- aspergers. When I walk into schools these days they do, and have so many things going on that contribute to the symptoms. I think it is funny that the mainstream kids # are getting smaller, and I wonder is anyone seeing this. Can we look at the NO Child Left Behind crap. It is all about testing. So we take out all the things that help all kids develope strong Right Brains. Physical education, and music classes are now only around for the IEP programs in alot of schools. This kills me. Then as kids are melting down they are getting IEP and our special ed programs prices go out the ROOF. Kids who are on the spectrum will always be on the spectrum, it is just a matter of where. All kids these days, especially boys,and especially kids on the spectrum are developementally behind in the Right Brain. Therapies for the right brain are simple and can be appplied for birth. Why is it that no body is talking about that? And if you do have a child that has food alergies, ar there body is intolerant to drugs, medicals, and chemicals, it might be good to eliminate that and then see where you are as far as educating them and therapies. THIS IS NOT ABOUT BLAME–OR PUTTING YOUR HEAD IN THE SAND AND WHINING, WHY ME–OR SITTING IN JUDGEMENT ON HOW ONE PERSON CHOOSES TO HELP THERE CHILD OVER THE OTHER—WE ALL WANT OUR CHILDREN TO DEVELOPE TO THERE BEST POTENTIAL, AUTISTIC OR NOT. This is not a disease like cancer. But i do think there are alot of things today then in the past that work against these kids. Am I the only one who believes this- adn that strengthing the Right Brain can help there development and there awareness to the world around them.

• Kristina Chew, PhD
  Mar 29, 2007 at 4:10 pm

  Mr. Best, your tenacious stance is evident. A teacher’s job, my fellow autism parent, is never easy—each child, each student (including those who are adults, too) brings fascinating new challenges to address. It is good work.

• daedalus2u
  Mar 29, 2007 at 4:19 pm

  Chris, What was the source of the mud that you are using. If you would send me a sample (just a few grams), I would be happy to see if it does have the bacteria in it that I suspect it does.

  Virtually every soil or mud sample does have them, it would be very surprising if it didn’t. These bacteria are extremely common, they perform the first step in the process of nitrification.

  I think your experience is absolutely on the right track. The most important area to get the bacteria on is the scalp. To provide a niche for these bacteria is the “reason” we have hair, and diffusion of NO into the skin is why the scalp skin is thin and well vascularized.

  I am 52 years old, self-diagnosed a few years ago after it started to get “better” when I increased my NO level. I still have Asperger’s, but it is ever so much better than it was. I am happier and more productive.

  Chris, you can reach me at dwhitlock at nitroceutic dot com

• Kassiane
  Mar 29, 2007 at 4:43 pm

  Maybe the clay baths weren’t particularly detoxifying, maybe they were tickling the right sensory integration spot? Or a combination. Since we’re all full of chemicals now, ick. I’m in my 20s and my communication goes down the toilet if I don’t get MY sensory integration “fix” for a few days (gymnastics, 3-4 days a week plus competitions). It makes both sides of my brain work together-something I have definate issues with, I have DEFINATE midline issues, split dominance, etc…AND hits the vestibular and proprioceptive buttons I need.

  Just a thought. A tight clay wrap sounds gross to me, but I know at least 4 kids who would LOVE it. They aren’t tactile defensive like me.

• Mark
  Mar 29, 2007 at 5:00 pm

  I am surprised at the hostility from a few of these comments (par for the course with the blogosphere?). There is compelling evidence that mercury and chelation are areas that are worth investigating further. I recommend everyone check out the Discover piece if you haven’t yet. I’m not the first person to say that science is good at coming up with a lot of lousy ideas that eventually get tossed out (and this is a good thing). Mercury and chelation may eventually get tossed, but there is certainly compelling evidence to warrant giving persistent correlations a fair shake. I admire those of you who refrained from insults.

• Kristina Chew, PhD
  Mar 29, 2007 at 5:06 pm

  Mark, Thank you for writing here; this post, It Is What It is: Autism Not Just In the Head, is about the Discover Magazine article.

• Club 166
  Mar 29, 2007 at 5:07 pm

  Of course the treatment would have to be proven not to harm. I am not that familiar with the harm caused by chelation. …

  This report , from the CDC, talks about 3 deaths from chelation and the potential serious harm from chelation (cardiac arythmias, renal failure, death).

  This is another general site about the problems with chelation, and

  This is a blog post from Kevin Leitch last year addressing the death of a 5 year old autistic boy from chelation.

  These are some of the reasons that I get upset when people recommend chelation as being just one of many different “biomedical” treatments.

• Club 166
  Mar 29, 2007 at 5:18 pm

  …Mercury and chelation may eventually get tossed, but there is certainly compelling evidence to warrant giving persistent correlations a fair shake. …

  Science and medicine can, indeed, be advanced by things that started out as oddball theories.

  But using human beings as guinea pigs for treatments that have only proven to be harmful in the past is not the way to go about doing that.

  And when some (not you, Mark) justify the use of chelation on so called “low functioning” autistics because they’re different from so called “high functioning autistics”, this seems to be saying something dangerously close to “They’re not really worth anything anyway, so who cares if we hurt or kill a few along the way”

• Chris
  Mar 29, 2007 at 5:21 pm

  Kassiane

  I do not wrap him up, I put him in a toy bucket with warm water and then I add the clay so he can play with it in there. I swerl it around and play with him so he is happy in there. I believe this clay is high in benonite, it is from LLCLAY. They have several different clays for different things. I have given mud adn seaweed wraps to women for over 15 years. So when I was seeing that my son was toxic. Meaning he reacted to everything with a rash, or thrush, or sensory, behavioral. I only did what I new to do. I honestly don’t care what part of the bath woke him up, sensation-or detox, he felt better, and he acted better, and the whole family likes having our son being interactive with us. So it was a win win situation. also gymnastics–Right brain strengthing–excellent–he loves it too- and asks for it–we can not afford it anymore though. But any physical workout, does great hings for the right brain and helps all kids concentrate and deal with and in life better. That is the part that kills me, because schools have tkaen it and music out of there programs becasue they are not core programs. They do not want to see that it is the most benificial to there learning- it will help them in all aspect of learning and socialization. KIds on a daily basis are joining the IEP programs. There are only a select few who will servive in this generation in the mainstream succesfully. SOME BODY NEEDS TO LOOK INTO THAT I THINK OR ELSE THESE KIDS are all going to miss out.

• Club 166
  Mar 29, 2007 at 5:27 pm

  Daedalus2u:

  Since nitric oxide levels have been shown to be increased in Tibetan and Bolivian mountain dwellers, I should think that you should try to convince Roy Richard Grinker to collaborate on a study with you.

  Since Dr. Grinker is great at epidemiology, and has looked at other remote cultures, you could have him do a study on the Tibetans to determine their incidence of autism. If the incidence is a lot lower, it would certainly lend support to your “NO deficiency” theory of autism.

• John Best
  Mar 29, 2007 at 5:48 pm

  Club 166, For one so concerned with safe treatments, you might want to tell us how vaccines and thimerosal were tested for safety. There are lots of parents of SIDS babies who would agree that chelation is much safer than thimerosal.

• daedalus2u
  Mar 29, 2007 at 5:49 pm

  Mark, science has already tossed out the “mercury causes autism” idea. It isn’t a hypothesis, it has been proven to be wrong. On many levels, by many researchers.

  There is not a single published case of a person with autism having measured elevated mercury, undergoing chelation, and having the symptoms of autism resolved coincident or following a lowering of mercury levels. There are lots of published cases showing no association of mercury with autism. In every large scale industrial mercury poisoning episode, there has never been a reported increase in autism.

  There isn’t a “scientific” contraversy about mercury and autism. There isn’t a connection.

  There is absolutely no evidence to support the “mercury causes autism” idea. None at all. There certainly isn’t “compelling” evidence.

  The only “contraversy” is by people still pushing it, who happen to be making lots of money off the “contraversy”. How much did Kirby make from his inflammatory book? How much is being make by the “expert witnesses” “testifying” that “mercury causes autism”? How much do they expect to make if they “win” the legal lottery? How much do they make by charging pharmaceutical prices for industrial grade chelating agents which they push on gullible parents?

  You liked the Discover article? I have not read it, but I understand that one of the proponents of “treat first, test to see if the treatment works later” philosophy, likened it to jumping off a cliff in the movies. Sometimes you don’t know if your momentum will carry you far enough, or if the water is deep enough. But it isn’t the practicioner who is jumping off the cliff, she is pushing autistic children off the cliff without checking first.

  There is a reason people are angry, autistic children are being subjected to harmful drugs with no evidence that they will be helped.

• julie
  Mar 29, 2007 at 5:52 pm

  I have read these studies now and understand why you would feel so passionately about it. It is the same way I feel about the judge Rottenberg Center just because someone says it helps if it could kill the child at what point do we say that it is not worth it. If it is not something that we would do to ourselves or consider for a normally developing child than I tend to feel it may be too extereme. My “typical” (if there is such a thing) children would not be harmed at all by participating in an OT, speech, music, sensory, or ABA program. Although they do not need these it would not harm them so those are the therapies that I feel should be explored more to learn more about what can be done. I worked with children with all different deveopmental disabilities for over 10 years before I had my own children. I was an in home trainer for over 7 years working with families who had to deal with the worst of all behaviors and a lot of very severe non verbal children. All of these children are people and should be treated as such even if they do not communicate in the traditional ways we are used to. Autism to me was always a matter of unlocking the code that allowed you to understand the childs needs and with any lock the key is different, but similar looking. If children got more sensory and other therapies younger and with more support for the parents in the home before they were over whelmed I think we may avoid some of the people having to be placed in institutions. For me as always education, support and hope and they keys to raising any child autistic or not.

• Club 166
  Mar 29, 2007 at 6:04 pm

  Club 166, For one so concerned with safe treatments, you might want to tell us how vaccines and thimerosal were tested for safety. …

  You would mean, something like this?

• daedalus2u
  Mar 29, 2007 at 6:10 pm

  Mr Best, have you read of the history of vaccines? You might do well to read the FDA CBER site on thimerosal.

  http://www.fda.gov/cber/vaccine/thimerosal.htm

  They quote a standard reference on vaccines.

  “In January 1928, in the early stages of an immunization campaign against diphtheria, Dr. Ewing George Thomson, Medical Officer of Health of Bundaberg, began the injection of children with toxin-antitoxin mixture. The material was taken from an India-rubber-capped bottle containing 10 mL of TAM. On the 17th, 20th, 21, and 24th January, Dr. Thomson injected subcutaneously a total of 21 children without ill effect. On the 27th a further 21 children were injected.Of these children .eleven died on the 28th and one on the 29th. (Wilson 1967)”

  Do you think the parents of those 11 children would agree that vaccines without preservatives are safer than vaccines with preservatives?

  Perhaps parents of children who have died horribly are not the best “experts” on which to rely?

  Club 166, I have communicated with Grinker, so far he doesn’t seem to be that interested in communicating with me. I suspect he doesn’t sufficiently understand physiology to appreciate the insight which I have.

  I think the Amish result do confirm my hypothesis. Amish don’t use electricity, so they can’t bathe as frequently as non-Amish. It is bathing, particularly frequent shampoos with detergents that is the problem (as I see it). Because they don’t use electricity, they are forced to use water from shallow wells, pumped by hand. That nearly always has these bacteria in it, particularly in a farming community. That is where the nitrate in ground water comes from.

• Kassiane
  Mar 29, 2007 at 6:38 pm

  I’m all about the movement & music programs for autistic and non autistic kids…because they DO offer opportunities, brain enrichment, et cetera to ALL kids…from the kid who sits there and listens/watches shyly to the kid who sings solos and does backflips.

  But my background is 13 years of choir, competitive gymnastics, coaching tumbling in both competitive and “special needs” (like all kids don’t have special needs, ha, I had a double national champion with learning disabilities) settings. I’ve seen what movement can do…what FUN can do.

  And it’s BEING A KID. Something I think that’s left out of the equation for too many kids with labels…time to be a KID and do KID things.

• julie
  Mar 29, 2007 at 7:02 pm

  Kassiane I completely agree my daughter is a 7 year old with autism. But she is not autism and I would not want it to define all that she is because she is so much more than that to the people who take the time to get to know her.

• Usal
  Mar 29, 2007 at 8:00 pm

  Mr. Best,

  Hmmmm, I didn’t know that vaccines post-1931 would have such an affect on my family. I guess I’ll just have to rethink everything I know about my grandfather (who was born in 1914) and my great-grandfather (who was born in Ireland in 1898) because clearly vaccinations after 1931 are the source of autism in my family. Or how about my great-grandfather’s father? Do you think that vaccinations made him autistic too?

  And I am autistic. I spent a very long day going through a large number of tests to find out if I was or not. And since you do not have access to my medical records (and will NEVER have access to them) you have no place trying to second guess the doctor that performed the testing.

  As for the “train wreck” comment, why do you think they tried to have me labeled “retarded?” My meltdowns were almost daily up until the fourth grade, and until high school I still had several a year. And my meltdowns could get violent, I once picked up several desks and THREW them with school books still inside. You can not look at how I am today, with a couple of keyboards and a lot of cables between us and make a judgement on what I was like as a kid. But then you’ve never seen me sit in a staff meeting, quietly hiding in the corner, or sitting at my desk after being forced to interact with several people at once, rocking back and forth in my chair.

  My success can be summed up in one word…MOM…

  I would not have leveled out or grown up without a lot of help from my mom. She was the one who pushed me to accept me for me and told me it was OK to be different from others. She taught me how to cope with life and get from one day to the next without giving up who I am. Because of her I am not the quiet kid in the corner with his nose in a book who never talks to anyone.

• Club 166
  Mar 29, 2007 at 8:06 pm

  …My success can be summed up in one word…MOM… …

  I suspect that this is a recurring theme in successful autistics.

  To modify and old saying,

  Love (and a lot of hard work) conquers all.

• John Best
  Mar 29, 2007 at 8:16 pm

  Usal, If you were throwing desks, that is a lack of discipline from your parents. It sounds like attention seking to me. You should have been spanked and it would have straightened you out. Sorry but you are nothing like non-verbal autistics who can’t fend for themselves.

• julie
  Mar 29, 2007 at 8:24 pm

  Assuming that the parents are not doing their job when a child with autism has a tantrum is what is wrong with how society views autism and the behaviors that accomany it. To hear this from a parent is so sad to me. I thought that we as parents were more educated than that. Appaerntly the belief that their is not enough education is true. If people who live with autism feel the parents are to blame still how can we expect society as a whole to feel any differently.

• Usal
  Mar 29, 2007 at 8:38 pm

  <