Throwing shoes at the IOM
Most people don't know that the Heimlich maneuver can be a really bad idea in many situations, even in some situations where it has been recommended in the past, and most people don't know that it was heavily promoted by the apparently unscrupulous Dr. Heimlich. After promoting his abdominal thrust idea for choking, he then promoted it as a technique to save near-drowning victims. From a Detroit Metro Times newspaper article from 2004:
Back in 1985, when Henry Heimlich presented information on his "Heimlich maneuver" at the Institute of Medicine, he was so profoundly unconvincing, so full of bad and dangerous information that members of the audience of medical experts took their shoes off and threw them at him.
Paraphrasing Autism Diva's source for the reported shoe throwing at the IOM:
In other words, Heimlich had no data to support what he was saying about his "Heimlich maneuver." His audience apparently could see he was speaking dangerous nonsense. Frustrated, they threw shoes at him when he spoke. It is unknown how many of the shoe throwers were scientists on the autism spectrum, each possibly having a rigid definition of truth and ethics--not to be crossed.
After pushing the Heimlich maneuver for drowning victims, Heimlich later went on to recommend infecting AIDS patients with malaria. This is a bad idea, too. Heimlich's son has detailed how his father has promoted dangerous nonsense.
This is the Keck Center of the National Academies. It's in Washington, D.C.
On Wednesday and Thursday of this week there was a meeting of some of the big-name, agenda-driven mercury-parents, and some more or less (some more, some less) straight scientists at the Keck Center. The meeting, associated with the Institute of Medicine, was to discuss ways the "environment" might cause or aggravate autism in susceptible embryos, fetuses or babies. When this meeting was first discussed by certain entrenched and paranoid mercury parents on the EoHarm Yahoo! group these conspiracy believers said that the 3 super mercury moms and the super mercury dad slated to be part of the panels were selling-out to the enemy, basically, that the IOM was obviously evil incarnate and up to no good. The paranoid faction suggested that these super-parents should not attend. But the super-parents went ahead and appeared as panelists, namely: Laura Bono of the "National" Autism Association; Sallie Bernard, Lyn Redwood, and Mark Blaxill (aka, Merck Glaxo) the original SAFE MINDS troika. Ms. Bernard is also part of Autism Speaks now that Cure Autism Now has been absorbed by them.
The audio from the two days of meetings was web-cast live. Autism Diva listened to some of the meetings on both days. Other skeptics also listened. We took notes.
Besides the parent panelists other notable people from autism organizations were there, Allison Tepper-Singer of Autism Speaks, and Lee Grossman of Autism Society of America, who redeemed himself slightly by suggesting that the IOM include autistic people themselves in such discussions, and who seemed to be advocating for funding of treatments mainly. He said something about losing another generation. Thanks Mr. Grossman. Laura Bono's husband was in the audience and spoke during the public commentary session. A Ms. Davis said that when her son was born 15 years ago the rate of autism was 1 in 5,000 (oranges) and now it's one in 150 (sheep), she said she just wanted to know what happened to her son, that she believed that is was the thimerosal in vaccines. Thanks, Ms. Davis for your helpful comments.
It's interesting to note that even though it didn't seem to get mentioned as a conflict of interest
during the two days of meetings, Lyn Redwood and Laura Bono, both, are Autism Omnibus (vaccine) litigants with attendant expectations of some kind of pay off (one assumes) if they can convince the world that thimerosal made their kids autistic. The other two, Sallie Bernard and Mark Blaxill both have made money by working for Big Pharma at some point in their working careers, but now they officially suspect Big Pharmaceuticals of deviously plotting to destroy humankind starting with their own children... or something like that.
There was a lot of talk between the mercury parents and the more marginal of the straight scientists about how the DAN! doctors have all this fantastic data on how they take mercury toxic kids and "recover" them with chelation, plus secretin, HBOT, and eye of newt, and wing of bat... well, that's not exactly what they said, but it was close. The straight scientists seem to be taking the DAN! dox and their fans at their word, believing that the DAN! dox had actually treated kids with "body burdens" of "heavy metals" and how so maaaany kids had regressed following vaccines, and how they practically all had this horrible diarrhea. (The majority of autistic kids don't "regress" at all, and even the quacks have shown that the main GI symptom associated with autism has been constipation.)
No one really shared too much hard data, especially during the sessions that Autism Diva listened to, but there all these bold assertions. Autism is a gut disease, all autistic kids have problems with glutathione--that sort of thing. Even though the straight scientists would add at different points in the discussion that there were so many different causes of autism. Obvious facts kept getting swept under the rug. Like, oh, there is no evidence that there's been any increase in real autism prevalence in the past 30 years, though there may have been an increase it's not so large that it is undeniable or obvious.
In the version of autism presented by the mercury moms and their DAN! coopted friends, there is one cause for autism: toxicity, or more specifically, thimerosal, depending on which one you talk to. But they say there are just all these cures that work. Well... they work for DAN! guys and gals, and..., well they don't work for all kids, but if you try all the cures on one kid, one of them is bound to work eventually...
The version the straight scientists were describing was autism as having many, many possible combinations of causes, each eliciting a different kind of cure, or intervention, and no one should be putting all the autistic kids through all of the treatments. One scientist noted that Down syndrome and Phenylketonuria both cause retardation, but when they figured out that a low-phenylalanine diet worked on PKU, they didn't rush out and try it on Down's kids.
One of the high points came from Mark Blaxill on the first day, from Autism Diva's rough notes:
How nice. Maybe Mark Blaxill has tried a full 50% of the DAN! therapies (of which there are many) and none of them have worked on his daughter. Maybe by this time next year he can say from first hand experience that 100% of their therapies are worthless.
One of the most ridiculous things that was said repeatedly was about how the DAN! dox have all these great data sitting in their files, but these doctors are too busy to mine it and write up and share it. Well, here is typical DAN! data, as shown at the MIND Institute mini-DAN! conference last year by THE DAN! of all DAN! dox, Dr. John Green. Dr. Green was all but worshiped as the best of the best of the DAN! dox by other speakers at the mini-DAN! Dr. Green, that would be the guy who has the medical board order posted regarding his for using an intravenous delivery of miscellaneous chemicals and/or vitamins and not telling the mom what the chemicals were, so that when the kid got sick later and ended up in the emergency room, the mom couldn't tell the ER doctors what the kid had been given. (Eye of newt? Vinegar and garlic?)
Anyway, here's Dr. Green's patient's urinary metals lab report. It was in his slides he showed at the MIND Institute. He specifically stated that it was for a provoked sample. But you don't see the fine print on the bottom of the lab report that says the numbers are normed to non-provoked standards.
There are other big problems with DDI lab reports, but that's the most obvious one. This test looks so scary because the mercury line goes as far as it can go into the red zone. But in fact this doesn't indicate scariness, it indicates a dodgy lab report. Real doctors don't use provoked urine tests to figure out if a person really had high mercury levels. Real doctors are afraid to use chelators just willy-nilly because they can be harmful. Real doctors with real mercury poisoned kids put the kids in the hospital to make sure they are ok while they decide what to do for the kid. Not all real mercury poisoned kids get chelated because the chelating itself can be dangerous and can cause more trouble by stirring up the metals unnaturally. Sometimes they just wait and watch the kid, and take urine and blood samples and so forth, but they would not use provoked samples.
The other thing is that the DAN! fans seem to think that the DAN! dox are really anxious to have real scientists look at their "data." Autism Diva keeps getting this mental picture of cockroaches rushing for dark corners when a light is switched on. Autism Diva really doesn't think that the majority of the DAN! dox want anyone looking too closely at what they are doing, hence the huge lack of peer reviewed literature coming from these people, and so many, "Trust me. I'm recovering most of my patients," kinds of statements from them.
So how good is all this fabulous data the DAN! dox are sitting on, that they have stashed away in their office files, as was claimed by one of the mercury moms at the IOM meeting on Wednesay? How much of their "data" are like useless for science as is Dr. Green's DDI lab report? How much of their "data" are anecdotal comments from parents who have been revved up by their "doctor" to encourage them to see improvement following X-treatment. "Oh, my Billy he's just a different child since I've begun overdosing him on vitamin A!"
Autism Diva went to the MIND Institute again yesterday evening, Dr. Hendren was giving a presentation on alternative treatments for autism. One interesting thing he mentioned was a case he knew where the chelator itself was found to contain mercury. No kidding.
During his presentation, Dr. Hendren said he realized that the DAN! doctors looked a little crazy, but he said he liked them. He said he couldn't recommend chelation, but if parents wanted to do it they should find a doctor who is experienced with such things. Hendren mentioned that Abubakar had died from being chelated, but forgot to add that a DAN! doctor (Anju Usman) sent Abubakar to Dr. Kerry (who killed the boy with chelation), and how after Kerry killed Abubakar, Kerry then went on to join the DAN! organization, and Hendren likewise didn't mention how Kerry is still a DAN! doctor in good standing. Hendren said something positive about John Green, something like he was one who was experienced in such things as chelation, but Green is up in Oregon. Not exactly accessible to most California parents.
Dr. Hendren seemed to be hinting at the fact that maybe his methyl B12 injections study was over. If that's true, thank goodness no more kids will be injected with mystery liquid from a syringe covered with tape (supposedly to keep the parents from figuring out if it was B12 or sterile saline they were injecting at home, every three days). Dr. Hendren is looking forward to getting an IRB approval for his HBOT study. He said he was collaborating with a little HBOT shop that is near the MIND Institute. It seems they are trying to get the autistic child study participants to go into a real HBOT chamber with oxygen or just room air for the placebo. Dr. Hendren mentioned that parents are buying the expensive home mild HBOT gadgets (nylon zip-up bags), he didn't mention that at least one Sacramento parent and others elsewhere are using these bags with supplemental oxygen, and he didn't warn people from that (it could get a person or persons killed), unfortunately.
The overall effect of Dr. Hendren's presentation seemed to give DAN! some credibility that is surely does not deserve, while subtly directing parents to more evidence based practices with some pleas for parents to support them with funding. He mentioned two experiments funded by parents, so that the parents could have their pet idea tested out. The two experiments he mentioned were with pharmaceuticals and ADHD and/or autism. Who are these people with $100,000 to give for this kind of thing? He also apologized for the fact that the MIND doesn't really directly help local autistic kids apart from whatever benefit they might get from being in a study (not a sure thing at all).
Autism Diva would never throw shoes at a scientist, though she might think about it, and she might be happy if someone else did. Autism Diva almost wishes she had thrown a shoe at Dr. Hornig while Dr. Hornig was showing the Rain Mouse horror video last year at the MIND Institute. A whole bunch of people should have thrown shoes at Dr. Mady Hornig when she showed the same video to the IOM back in 2004, trying to get the more gullible of her audience to buy that thimerosal makes some mice act autistic. Autism Diva wishes some scientists had thrown shoes at Laura Bono, Lyn Redwood, Mark Blaxill, Sallie Bernard, Martha Herbert and Jill James this week because they all promoted more personal belief than science while at the IOM. One can only hope that this is their last chance to make misleading and dangerous statements about autism to people in charge of public health. One can only hope that the media will catch on and stop making these rich and well connected mercury parents seem like heroes for standing up against the mighty establishment. One would think that the media might have learned a lesson from their credulous treatment of Dr. Heimlich's stories.
Autism Diva
barefoot
... From organizations such as the American Heart Association and Red Cross to the prestigious Institute of Medicine to the nation’s leading experts on drowning, the body of opinion reached at this point is virtually unanimous: Unless the victim is choking on something, there is no scientific evidence justifying the use of the Heimlich maneuver in [near-drowning] cases. In fact, it has the potential to add even more complications to an already perilous situation.
The problem is that the media, which love a great man-against-the-system story, continue to give credence to Heimlich and his views on this, the experts say.
“A good story trumps good science,” is the way Mary Fran Hazinski, a pediatric critical-care nurse and the American Heart Association’s senior editor for emergency cardiovascular care programs, describes the situation.
Certainly Heimlich is prime fodder for such sensationalistic fare. After all, he initially had to wage a fierce battle with the established medical community in an attempt to have his maneuver recognized as the accepted way to treat choking victims. He insists that he’s again in the right on this issue. The maverick Cincinnati doctor, now 84, continues to wade against the prevailing scientific tide as he uses the immense good will engendered by his name to continue promoting the claim that his maneuver should be the first procedure initiated to resuscitate near-drowning victims. In public appearances and on the Web site of his nonprofit Heimlich Institute, he relentlessly maintains that mainstream medicine stubbornly resists embracing a procedure that could save thousands of lives. [Emphasis added].
Back in 1985, when Henry Heimlich presented information on his "Heimlich maneuver" at the Institute of Medicine, he was so profoundly unconvincing, so full of bad and dangerous information that members of the audience of medical experts took their shoes off and threw them at him.Paraphrasing Autism Diva's source for the reported shoe throwing at the IOM:
Respected scientific and medical experts gathered for the 1985 Institute of Medicine/American Heart Association panel presentation. The panel was charged with drawing up guidelines for how to save the lives of people with foreign body airway obstruction. Attendees threw shoes at Henry Heimlich during a discussion period. It's recorded in transcripts of the meeting.
In other words, Heimlich had no data to support what he was saying about his "Heimlich maneuver." His audience apparently could see he was speaking dangerous nonsense. Frustrated, they threw shoes at him when he spoke. It is unknown how many of the shoe throwers were scientists on the autism spectrum, each possibly having a rigid definition of truth and ethics--not to be crossed.
After pushing the Heimlich maneuver for drowning victims, Heimlich later went on to recommend infecting AIDS patients with malaria. This is a bad idea, too. Heimlich's son has detailed how his father has promoted dangerous nonsense.
This is the Keck Center of the National Academies. It's in Washington, D.C.
On Wednesday and Thursday of this week there was a meeting of some of the big-name, agenda-driven mercury-parents, and some more or less (some more, some less) straight scientists at the Keck Center. The meeting, associated with the Institute of Medicine, was to discuss ways the "environment" might cause or aggravate autism in susceptible embryos, fetuses or babies. When this meeting was first discussed by certain entrenched and paranoid mercury parents on the EoHarm Yahoo! group these conspiracy believers said that the 3 super mercury moms and the super mercury dad slated to be part of the panels were selling-out to the enemy, basically, that the IOM was obviously evil incarnate and up to no good. The paranoid faction suggested that these super-parents should not attend. But the super-parents went ahead and appeared as panelists, namely: Laura Bono of the "National" Autism Association; Sallie Bernard, Lyn Redwood, and Mark Blaxill (aka, Merck Glaxo) the original SAFE MINDS troika. Ms. Bernard is also part of Autism Speaks now that Cure Autism Now has been absorbed by them.The audio from the two days of meetings was web-cast live. Autism Diva listened to some of the meetings on both days. Other skeptics also listened. We took notes.
Besides the parent panelists other notable people from autism organizations were there, Allison Tepper-Singer of Autism Speaks, and Lee Grossman of Autism Society of America, who redeemed himself slightly by suggesting that the IOM include autistic people themselves in such discussions, and who seemed to be advocating for funding of treatments mainly. He said something about losing another generation. Thanks Mr. Grossman. Laura Bono's husband was in the audience and spoke during the public commentary session. A Ms. Davis said that when her son was born 15 years ago the rate of autism was 1 in 5,000 (oranges) and now it's one in 150 (sheep), she said she just wanted to know what happened to her son, that she believed that is was the thimerosal in vaccines. Thanks, Ms. Davis for your helpful comments.
It's interesting to note that even though it didn't seem to get mentioned as a conflict of interest
during the two days of meetings, Lyn Redwood and Laura Bono, both, are Autism Omnibus (vaccine) litigants with attendant expectations of some kind of pay off (one assumes) if they can convince the world that thimerosal made their kids autistic. The other two, Sallie Bernard and Mark Blaxill both have made money by working for Big Pharma at some point in their working careers, but now they officially suspect Big Pharmaceuticals of deviously plotting to destroy humankind starting with their own children... or something like that.There was a lot of talk between the mercury parents and the more marginal of the straight scientists about how the DAN! doctors have all this fantastic data on how they take mercury toxic kids and "recover" them with chelation, plus secretin, HBOT, and eye of newt, and wing of bat... well, that's not exactly what they said, but it was close. The straight scientists seem to be taking the DAN! dox and their fans at their word, believing that the DAN! dox had actually treated kids with "body burdens" of "heavy metals" and how so maaaany kids had regressed following vaccines, and how they practically all had this horrible diarrhea. (The majority of autistic kids don't "regress" at all, and even the quacks have shown that the main GI symptom associated with autism has been constipation.)
No one really shared too much hard data, especially during the sessions that Autism Diva listened to, but there all these bold assertions. Autism is a gut disease, all autistic kids have problems with glutathione--that sort of thing. Even though the straight scientists would add at different points in the discussion that there were so many different causes of autism. Obvious facts kept getting swept under the rug. Like, oh, there is no evidence that there's been any increase in real autism prevalence in the past 30 years, though there may have been an increase it's not so large that it is undeniable or obvious.
In the version of autism presented by the mercury moms and their DAN! coopted friends, there is one cause for autism: toxicity, or more specifically, thimerosal, depending on which one you talk to. But they say there are just all these cures that work. Well... they work for DAN! guys and gals, and..., well they don't work for all kids, but if you try all the cures on one kid, one of them is bound to work eventually...
The version the straight scientists were describing was autism as having many, many possible combinations of causes, each eliciting a different kind of cure, or intervention, and no one should be putting all the autistic kids through all of the treatments. One scientist noted that Down syndrome and Phenylketonuria both cause retardation, but when they figured out that a low-phenylalanine diet worked on PKU, they didn't rush out and try it on Down's kids.
One of the high points came from Mark Blaxill on the first day, from Autism Diva's rough notes:
I just want to underscore that one of the reasons evidence based medicine became popular was because of a need to ration the "small molecules" that big pharmaceuticals sell (because drugs are expensive). We don't need evidence based medicine so much in doing autism research.
"I hate to argue for relaxing standards ... but we need to be roughly right." We need to come to grips. I can imagine all sorts of negative studies, that would miss the main point, because they are studying the kids who aren't the sort who would respond to a particular treatment. We (DAN!ite) parents don't know what else to do, we have to act today. We don't know if we are right.
My daughter's 11, I can't wait for a cure. I'm sure 50% of the therapies we are doing are absolutely worthless, I don't know which ones are worthless.
How nice. Maybe Mark Blaxill has tried a full 50% of the DAN! therapies (of which there are many) and none of them have worked on his daughter. Maybe by this time next year he can say from first hand experience that 100% of their therapies are worthless.
One of the most ridiculous things that was said repeatedly was about how the DAN! dox have all these great data sitting in their files, but these doctors are too busy to mine it and write up and share it. Well, here is typical DAN! data, as shown at the MIND Institute mini-DAN! conference last year by THE DAN! of all DAN! dox, Dr. John Green. Dr. Green was all but worshiped as the best of the best of the DAN! dox by other speakers at the mini-DAN! Dr. Green, that would be the guy who has the medical board order posted regarding his for using an intravenous delivery of miscellaneous chemicals and/or vitamins and not telling the mom what the chemicals were, so that when the kid got sick later and ended up in the emergency room, the mom couldn't tell the ER doctors what the kid had been given. (Eye of newt? Vinegar and garlic?)
Anyway, here's Dr. Green's patient's urinary metals lab report. It was in his slides he showed at the MIND Institute. He specifically stated that it was for a provoked sample. But you don't see the fine print on the bottom of the lab report that says the numbers are normed to non-provoked standards.
There are other big problems with DDI lab reports, but that's the most obvious one. This test looks so scary because the mercury line goes as far as it can go into the red zone. But in fact this doesn't indicate scariness, it indicates a dodgy lab report. Real doctors don't use provoked urine tests to figure out if a person really had high mercury levels. Real doctors are afraid to use chelators just willy-nilly because they can be harmful. Real doctors with real mercury poisoned kids put the kids in the hospital to make sure they are ok while they decide what to do for the kid. Not all real mercury poisoned kids get chelated because the chelating itself can be dangerous and can cause more trouble by stirring up the metals unnaturally. Sometimes they just wait and watch the kid, and take urine and blood samples and so forth, but they would not use provoked samples.The other thing is that the DAN! fans seem to think that the DAN! dox are really anxious to have real scientists look at their "data." Autism Diva keeps getting this mental picture of cockroaches rushing for dark corners when a light is switched on. Autism Diva really doesn't think that the majority of the DAN! dox want anyone looking too closely at what they are doing, hence the huge lack of peer reviewed literature coming from these people, and so many, "Trust me. I'm recovering most of my patients," kinds of statements from them.
So how good is all this fabulous data the DAN! dox are sitting on, that they have stashed away in their office files, as was claimed by one of the mercury moms at the IOM meeting on Wednesay? How much of their "data" are like useless for science as is Dr. Green's DDI lab report? How much of their "data" are anecdotal comments from parents who have been revved up by their "doctor" to encourage them to see improvement following X-treatment. "Oh, my Billy he's just a different child since I've begun overdosing him on vitamin A!"
Autism Diva went to the MIND Institute again yesterday evening, Dr. Hendren was giving a presentation on alternative treatments for autism. One interesting thing he mentioned was a case he knew where the chelator itself was found to contain mercury. No kidding.
During his presentation, Dr. Hendren said he realized that the DAN! doctors looked a little crazy, but he said he liked them. He said he couldn't recommend chelation, but if parents wanted to do it they should find a doctor who is experienced with such things. Hendren mentioned that Abubakar had died from being chelated, but forgot to add that a DAN! doctor (Anju Usman) sent Abubakar to Dr. Kerry (who killed the boy with chelation), and how after Kerry killed Abubakar, Kerry then went on to join the DAN! organization, and Hendren likewise didn't mention how Kerry is still a DAN! doctor in good standing. Hendren said something positive about John Green, something like he was one who was experienced in such things as chelation, but Green is up in Oregon. Not exactly accessible to most California parents.
Dr. Hendren seemed to be hinting at the fact that maybe his methyl B12 injections study was over. If that's true, thank goodness no more kids will be injected with mystery liquid from a syringe covered with tape (supposedly to keep the parents from figuring out if it was B12 or sterile saline they were injecting at home, every three days). Dr. Hendren is looking forward to getting an IRB approval for his HBOT study. He said he was collaborating with a little HBOT shop that is near the MIND Institute. It seems they are trying to get the autistic child study participants to go into a real HBOT chamber with oxygen or just room air for the placebo. Dr. Hendren mentioned that parents are buying the expensive home mild HBOT gadgets (nylon zip-up bags), he didn't mention that at least one Sacramento parent and others elsewhere are using these bags with supplemental oxygen, and he didn't warn people from that (it could get a person or persons killed), unfortunately.
The overall effect of Dr. Hendren's presentation seemed to give DAN! some credibility that is surely does not deserve, while subtly directing parents to more evidence based practices with some pleas for parents to support them with funding. He mentioned two experiments funded by parents, so that the parents could have their pet idea tested out. The two experiments he mentioned were with pharmaceuticals and ADHD and/or autism. Who are these people with $100,000 to give for this kind of thing? He also apologized for the fact that the MIND doesn't really directly help local autistic kids apart from whatever benefit they might get from being in a study (not a sure thing at all).
Autism Diva would never throw shoes at a scientist, though she might think about it, and she might be happy if someone else did. Autism Diva almost wishes she had thrown a shoe at Dr. Hornig while Dr. Hornig was showing the Rain Mouse horror video last year at the MIND Institute. A whole bunch of people should have thrown shoes at Dr. Mady Hornig when she showed the same video to the IOM back in 2004, trying to get the more gullible of her audience to buy that thimerosal makes some mice act autistic. Autism Diva wishes some scientists had thrown shoes at Laura Bono, Lyn Redwood, Mark Blaxill, Sallie Bernard, Martha Herbert and Jill James this week because they all promoted more personal belief than science while at the IOM. One can only hope that this is their last chance to make misleading and dangerous statements about autism to people in charge of public health. One can only hope that the media will catch on and stop making these rich and well connected mercury parents seem like heroes for standing up against the mighty establishment. One would think that the media might have learned a lesson from their credulous treatment of Dr. Heimlich's stories.
Autism Diva
barefoot
Labels: institute of medicine, IOM, MIND Institute, quackery
posted by Autism Diva at 4:28 PM
13 Comments:
Usman gets a hero's treatment in Bock's new book ; no surprise.
I don't think it's the last we'll hear from the "rich and well connected," though.
Blaxill has been chelating for years. Assuming his daughter is still autistic, I wonder why he isn't able to recognize an ineffective treatment when he sees one? He's also reported all sorts of tin spilling during chelation. I wonder why SAFE MINDS isn't maintaining the stannous quo.
There is something fascinating about science.
One gets such wholesale returns of conjecture out of such a trifling investment of fact.
Mark Twain.
Life on the Mississippi
First, I love your Einstein quote (he's one of my heroes) and love notmercury's Mark Twain quote (love Mr. Twain, also).
Question...from a mom to two sons on the spectrum who spends an enormous amount of time loving her sons and homeschooling them (with some wonderful results I might add): Do these people who desperately need to cure their autistic children spend any quantity of quality time interacting with them, experiencing life activities with them, hugging them? Or do they just drag them from therapy to therapy, chelation to chelation and hope someone else's questionable means will provide what they are parents should be providing?
Just wondering.
The most virulent curebie parents I knew had nothing to do with their kid...quite the contrary, xe was shuttled from therapy to therapy, at home constantly with a college student...when I was sick xer dad actually asked me "Well what am *I* supposed to do with xer for 2 hours?" Um, ride on that 2 people bike you have? I dunno, it is there for something other than the musclefication of Kassiane...
That was the worst example but I knew other families with similar arrangements, but whose children DID know their voices better than the college students'.
Real doctors with real mercury poisoned kids put the kids in the hospital to make sure they are ok while they decide what to do for the kid.
If I had to pick one phrase to epitomize my feelings about those who promulgate the mercury myth, this would be it. Thanks for voicing it for me, AD.
My daughter's 11, I can't wait for a cure. I'm sure 50% of the therapies we are doing are absolutely worthless, I don't know which ones are worthless.
This is what I find most creepy about the mercury people and generally with altie-woo types - their unabashed love of unsupervised and unjustified human medical experimentation on their children. If real academic doctors submitted studies on children like this to an IRB based on these crap justifications they'd be thrown out of their universities.
It's some kind of illness that makes people think that it's ok to do this. It's as if they believe their children are some kind of chattel to be used as test subjects for completely unproven and downright nutty cures.
I think we need to revise the Nuremberg Code.
Melody, the Mark Twain quote is supposed to be on the side of the Keck Center building (where the IOM group met)
Autism Diva was a big believer in spending quantity time (not just minimum so called "quality time") with her kids. There was a whole lot of hugging, too.
Some parents are single parents and they don't have the option of staying home with their kids, and some autistic kids really don't want to be hugged, so it's not just an easy answer, but surely spending lots of time with one's children and hugging them or otherwise communicating love and acceptance is so important.
Thanks for your coments Kristina, Kassiane, Steve D, not mercury, and Mark.
Mark, it is really scary how parents have the confidence to try out bizarre and dangerous treatments on their kids. Autism Diva was almost one of those parents, once upon a time. Though she never did anything to her kids as extreme as home HBOT or IV chelation, there were some dumb ideas she tried out with encouragement from health-food store books, magazines, and that sort of thing.
It seems that some parents just have all this confidence in their own judgement of what is safe.
One sort of expects home surgeries next, with mom or dad wielding the scalpel... can't trust them doctors and big pharma anyway...
Thank you, thank you and thank you again! For the longest time, I was beginning to think I was the only parent out there who wasn't duped by all these pseudo-scientists!!!
By the way, I'd read Heimlich's interview about using his maneuver for near-drownings. I fell for it hook, line, and sinker! It sounded so credible, especially since the Heimlich itself is the preferred method for choking these days (except for an infant, I think).
Wow! I'll have to research that now. Anyway, just wanted to say hello!
Some parents are already wielding the syringe to give their kids those B-whatever shots----scalpels and home dental work next.....
Mark wrote:
"It's some kind of illness that makes people think that it's ok to do this. It's as if they believe their children are some kind of chattel to be used as test subjects for completely unproven and downright nutty cures."
Yes -- it's simply a variation on Munchausen by Proxy.
PLEASE FORGIVE ME FOR RE-POSTING THIS - I have no email address for you and believe you would make a particularly valuable addition to this [virtual] event. Would you mind letting me know if you are interested?
I’m writing to invite to you to join a small group of bloggers who will interview, in a telephone conference call, leading experts and advocates in the field of autism. Since the autism community is particularly active and established in ways that facilitate the sharing of information, it is our hope that access to these researchers and clinicians will be of particular value.
Our guest will be: Professor and clinician Dr. Michael Weiss Michael J. Weiss, Ph.D., a developmental psychologist at Giant Steps Connecticut, a private school for children diagnosed with autism and other developmental disabilities, and an Adjunct Professor of Psychology at Fairfield University, also in Connecticut. Dr. Weiss has served on the faculty of the medical schools at both McGill and Harvard universities.
Best known for his integrated approach to raising children diagnosed with autism, Dr. Weiss has written extensively on both typical and atypical development. His most recent book (with Sheldon Wagner, Ph.D., and Susan Goldberg) is Drawing the Line: Ten Steps to Constructive Discipline and Achieving a Great Relationship With Your Kids (Warner Books, 2006).
Your blog is remarkably far-reaching and clearly trusted and your questions will add a great deal to the conversation.
This news conference is sponsored by Revolution Health , the new health resource website founded by Steve Case, partly because of the difficulties he and his family faced during his brother’s battle with brain cancer. He wants to make it a bit easier for those who follow by providing tools to support both patient and family. I’m working with them to support the work of bloggers who follow health issues. One way we’re doing that is by conducting these topical briefings, just for the blogger universe. Revolution wants to highlight its ability to aggregate and share critical information on health issues by providing new information and contact with health leaders in relevant disease communities.
One great asset of the site is its population of experts, including those on autism, drawn from major academic institutions across the country, including Columbia, Harvard, Cleveland Clinic, the University of California at San Francisco, the University of Southern California, Johns Hopkins, Memorial Sloan Kettering, MD Anderson, and more. We invited one of those experts in allergies, along with a leading advocate to participate in a conference call/news conference to answer blogger questions. We’d like you to join us. The call is informational; you are under no obligation to write about the conversation unless you find it useful.
Here are the details:
WHO: Six to ten Autism bloggers and a major medical figure in the field
WHAT: Conference call/news conference with Autism bloggers
WHEN Wednesday April 25th 7 PM EDT; 4 PM PDT
WHERE: Conference Call – number to be provided upon RSVP
WHY: To answer questions on the issue – clinical, research and other areas
We will provide audio after the conference if you would like to post a link to that as well.
Please RSVP, by email or when you know if this is an opportunity that interests you.
With best wishes,
Cynthia Samuels for Revolution Health
Autism Diva,
You weave an incredibly powerful argument for the needs to be skeptical AND caring. Loved the post and the analogies. "Doing what's best for my child" has taken on a frightening new meaning for the desperate parents whose experts hide behind credentials and affiliations with organizations with lobbying power.
Many alternative therapy practitioners tend to be the most adept at listening to the parents and offering them emotional comfort that there is hope. It's no mystery as to why they succeed: they are the expert, they offer (unverifiable) hope and (impossible to prove questionably effective) treatment, and they make the parents believe it is the expert, the magic elixir, the ability of the practitioner that will fix what is wrong with the child.
We've known for many years about the effectiveness of certain treatments (ABA, certain medications) and, yet, every 5-10 years there emerges something "new" and "revolutionary" for the low, low price of thousands of dollars and cents; never mind it's not peer reviewed nor is it replicable.
Lastly, if a behavior analyst viewpoint is welcome in that teleconference, please contact us at behaviorconcepts@gmail.com
Andrew Houvouras
I have a pair of old shoes in my garage that I wear when I'm spreading manure in my garden. Just the thing for throwing at Blaxill and the other cockroaches you mentioned. They certainly need squashing.
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