Autism Street

Are you a skeptic, or highly credulous? Take these quizzes and find out! Your childs health and your own wallet may be at stake!

You may have heard of Jim Adams. He’s an ASU professor, and the researcher conducting the chelation study in Arizona at the Southwest College of Naturopathic Medicine, who appeared on NBC’s Dateline a couple of weeks ago. He’s connected to a new website that advertises a “zeolite autism study” apparently selling a dietary supplement - mineral drops.

Natural Cellular Defense is purified clinoptilolite, a type of zeolite, suspended in solution. 

Visit the websites below!!! Read their information. But most importantly, please draw your own conclusions (I’m not going to link them, but you can cut and paste, or type them into your browser). You’ll be grading yourself on these quizzes, so don’t worry about studying too hard. Admittedly, the quizzes below are fairly non-scientific for now.

Note: links and questions are based on web content available at the time of this post.

www.zeoliteautismstudy.com

Quick Quiz A: The Zeolite Study Quiz

1. Who will apparently conduct the study’s data analysis?
2. Is the product offered for sale on the study website?
3. If there is an offer of special pricing, who does it apply to?
4. What is the encouragement, if any, offered for becoming a distributor?
5. How much is a 1-year supply (retail) if you use 20 drops per day?
6. From the “Magic of Zeolite” Latest News page, what is a chemtrail?
7. Who is listed as the study coordinator?

[Update June 27, 2006: The "Magic of Zeolite" article appears to have been moved or removed from the Latest News - here's a small excerpt from that article in case you missed it.

A note to those who may be concerned about the adverse effects of chemtrail absorption: This product may prove to be an effective way to rid the body of the harmful effects of chemtrail absorption.

Please feel free to skip question 6 above.]

Made up your mind yet?  Want to look into this further?? 

www.marlana.org  (linked by the picture in the zeoliteautismstudy website)

[Edit: 24 Aug 2006 - The picture link as previously described is apparently no longer there].

Quick Quiz B: Miscellaneous Quiz

1. What is for sale at this website?
2. Who are Forrist and Marlana?
3. What background/training do they have?
4. Is there a link to the zeoliteautismstudy website from marlana.org?
5. What is DNA activation by e-mail?
6. What are “laser energized” nutritional supplements?
7. What is the in-person services rate, and can it be more?

Gracious!  These people are very interesting.  Let’s do some more reading, and answer some more questions.

www.internet-marketing-toolbox.com

Quick Quiz C: Miscellaneous Quiz

1. Whose website does this appear to be?
2. What is for sale at this website?
3. What does the following bullet point mean to you?

“How to acquire or develop products specially designed for focused niche markets that will fall over themselves to buy from you”  

[Edit: 24 Aug 2006 - The site appears to be unavailable now. It's still available in Google Cache for now. Link].

How did you do? Do you know if you are skeptical or credulous yet? If you’re not sure (or even if your are), read on!

You can click on the picture of New Mexico’s St. Cloud mine to learn more about clinoptilolite from New Mexico Tech. University’s department of Earth and Environmental Sciences, but if you want to read about an 18.3 million ton reserve of this natural zeolite (clinoptilolite), you can find more information at St. Cloud Mining in their data sheets.

Only 18.3 million tons in reserve at this one mine?  Wow!  That zeolite is really rare!!  To find out how rare it can be, try the following quiz!

www.giftbargains4u.com/Natural-Zeolite-Clinoptilolite_p_0-1995.html

Extra Credit Quiz D: Miscellaneous Quiz

1. What is apparently the retail price for a 25 LB bag (not necessarily purified or intended for consumption) of clinoptilolite?

2. Assuming that a $40 bottle, with tax and shipping included (similar to the distributor price) contains 2.4g total (100 3-drop, 24mg doses) of purified clinoptilolite, what is the price per pound? (1 pound = about 453 grams).

A. About $75.50
B. About $755.00
C. About $7,550.00

To be objective about this, clinoptilolite, which is typically sold by the ton, is apparently plentiful and inexpensive (probably less than $1/pound to industrial purchasers, maybe a little more for food grade, but I could be wrong). It apparently requires processing/purification to reach it’s final formula as sold as a human dietary supplement. How is this achieved? From reading the patent, it looks something along the lines of: mix with small amount of acid and iron oxide, dilute with saline, cook, and filter. I’m sure there could be more to it than that in reality, after all there would be specific processes, facilities, equipment, and permits involved too. My guess would be that purification takes place at a company equipped to handle such processing, and that the added cost at that point in manufacture, reflects the time, materials, and reasonable profit of the processor on top my estimated $1/pound. Of course then there is any additional preparation, packaging, marketing, distribution, Waiora profits, and distributor profits that add in. It’s interesting that the finished product’s retail price of zeolite, by weight, is apparently more than gold itself.

$8,458.00 USD approximate price/lb. of pure gold*
$9,435.00 USD approximate retail price/lb. purified clinoptilolite**

*Gold price of $580/Troy ounce used (June 2006). 1 pound = 14.5833 Troy ounces.
**Purified zeolite price of $199.95/9.6g (4-2.4g bottles)

Still not sure if you’re skeptical or credulous? Here’s one more quiz.

www.waiora.com/about/managmentTeam.php

Extra Credit Quiz E: Miscellaneous Quiz

1. True or False?

In the Waiora 6-member management team, 5 have “network marketing” listed as a major area of work experience. 

Is this metaphorical alchemy? Are families that have a child with autism a marketing target? I’m fairly certain that no one is going to hear Jim Adams barking, “Zeolite here!…Get yer zeolite here!” anytime soon, but aside from the study, is it possible that the ”James Adams, PhD” name has been incorporated into a clever sales pitch? 

Although it had briefly disappeared into the Bermuda Triangle, the 37th Meeting Of The Skeptics’ Circle is up at Autism Diva. It features a great storybook theme that takes place below the surface -

Somewhere north of the West Indies and east of Disney World.

There’s plenty of great skeptical autism blogging, and of course plenty of general skepticism. For the dyed-in-the-wool skeptics, don’t miss Bronze Dog’s compilation of the Doggerel Index.

Don’t be a square, surf on over to the Triangle Circle Meeting.

Recent love and acceptance, and a sense of humor

If you didn’t get a chance to read last week’s guest blogger Belle’s post about her decision to withdraw her daughter from the AZ chelation study and the media influence of NBC’s Dateline coverage and an Autism Speaks video, I highly recommend it.

Here’s a mom who really “gets” it - most kids probably develop with or without any kind of biomedical intervention. As commenter ebohlman notes, a favorite skeptical blogger of mine, Prometheus, almost never fails to point out that autism is charcterized by developmental delay - not developmental stasis. 

Belle did an excellent job writing about how she loves her daughter for who she is, and there are many more parents like her. Be sure not to miss the comments thread - there’s lots of good going around.

I have to mention that I hope Belle will author another post sometime soon. I like her sense of humor. When I was corresponding with her about her first post at Autism Street, although she was just being her humorous self, she managed to firmly implant the theme song tune to the old PBS favorite Sesame Street, in my head for a couple of days. She’d sent me an e-mail that queried:

“Can you tell me how to get…how to get to Autism Street?”

Archived love and acceptance

Speaking of PBS Television, and accepting and loving your children, if you have not seen this video of the late Fred Rogers testying before a Senate hearing in 1969, I recommend it.

Video Link

In 1969 the US Senate had a hearing on funding the newly developed Corporation for Public Broadcasting. The proposed endowment was $20 million, but President Nixon wanted it cut in half because of the spending going on in the Vietnam War. This is a video clip of the exchange between Mr. Rogers and Senator Pastore, head of the hearing. Senator Pastore starts out very abrasive and by the time Mr. Rogers is done talking, Senator Pastore’s inner child has heard Mr. Rogers and agreed with him.

Yes, Fred Rogers’s passion for what he did is clear, and his take home message of love for children is impossible to miss.

“I end the program by saying, you’ve made this day a special day by just your being you, there’s no person in the whole  world like you, and I like you just the way you are.”

Here’s another quote from Fred Rogers that I like:

“I don’t believe that children can develop in a healthy way unless they feel that they have value apart from anything they own or any skill that they learn. They need to feel they enhance the life of someone else, that they are needed. Who, better than parents, can let them know that?”

In reality, the likely number of people who even believe that children with autism are really mercury poisoned is probably pretty small (Of 552 parents who participated in a recent internet survey about treatments used, only about 7% reported using or having tried chelation therapy). Source  To a portion of that small percentage of believers, the names Mark Geier and David Geier are probably pretty familiar.

To the die-hard “believers” of the “mercury causes autism” hypothesis, chelation apparently makes some sort of sense - remove the mercury and voila the autism should disappear/diminish. So what happens when children undergo chelation therapy and lo and behold, the children are still autistic? Could it be that mercury just doesn’t cause autism or that people with autism don’t really have mercury poisoning? Nah, that could ruin a firm-held belief; it’s probably more comfortable to seek another answer that fits the belief. Could it be that testosterone makes mercury more toxic or somehow binds to it so that chelation is not as effective as possible? I’m not going to re-hash the apparent nonsense of this, be sure to read up thoroughly on what’s known as the “Lupron Protocol“. You’ll need to set aside any knowledge you may have that exposes the lack of scientific proof that mercury even causes autism or that people with autism even have mercury toxicity in the first place.

So much of this sounds so far-fetched at this point, it could make one wonder how research related to this would ever get past an Institutional Review Board.

Kathleen over at the Neurodiversity Weblog has some interesting information (courtesy of the Office of Human Research Protection under the Freedom Of Information Act) about some recent research by Mark Geier and David Geier and the apparently associated Institutional Review Board (IRB).

Legal? Maybe. Ethical? Sure doesn’t look that way. Remember, the primary purpose of an IRB is the protection of human research subjects. Whether evaluating the legality, ethics, or safety issues that surround any such research, it is supposed to be an independent board without conflicts of interest. IRB approval is typically required (except under special circumstances) prior to experimentation with human research subjects.

Head on over to the Neurodiversity Weblog and read Significant Misrepresentations: Mark Geier, David Geier & the Evolution of the Lupron Protocol (Part Two), where you’ll get a much closer look at some very interesting details about an IRB. Don’t miss the comments thread.

My wife recently told me about an acquaintance of ours (through a local online parent group) who had just withdrawn from the Arizona chelation study at the Southwest College of Naturopathic Medicine. It had been I long time since I had exchanged any sort of messages with her or the group, so I sent her an e-mail to ask her about it.

Boy was I in for a wonderful surprise - a return message full of love and acceptance for a wonderful child! This was interesting to me, because I was curious how the influence of media like NBC’s Dateline or Autism Speaks may or may not have played a part in her decision, especially since her daughter had actually appeared in the Dateline segment. I did not specifically mention Dateline or Autism Speaks in my original e-mail to her, but did ask if media was an influence.

We exchanged several more e-mails and discussed her guest blogging about this. Without any further ado, I’d like to welcome a guest blogger to Autism Street who will go by the name Belle. She’ll refer to her daughter as Mulan. I’ll ask Belle two questions, and she’ll provide her answers. Whether or not she fields any comments will be entirely up to her.

~~~~~

Belle, what influenced your decision to participate?

I had read a lot on chelation, and I was at one point in my life, ready to do “whatever” it took!  It’s easy for parents to get hooked on all the hype and “doom and gloom” out there.  If at one point I had read that I could get a child as cool and great as Mulan, then maybe I wouldn’t have been so quick to do “whatever” it took.  

How did you arrive at the decision to withdraw Mulan from the study?

Thanks to time, discussion with friends, and Mulan herself, I decided to withdraw. I signed up for this about a year ago, got approved for it, and started the process. Since signing up, I had a lot of time to listen to others and to think more about what I was doing. 

Then there’s Mulan.  Mulan is doing soo well!  I couldn’t ask for a child to be doing as well as her.  If I had been told that she’d be doing as well as she is, I wouldn’t have believed what anyone was telling me.  I know another local research nurse who has a son who is also doing really well. Sometimes it seems she’s the only one I know who doesn’t talk “doom and gloom”.  I am taking her attitude.  I do believe that with a lot of hard work on the parents’ part, discipline, and reality, your child can do a lot! 

When I read about someone’s child who is doing such and such, and they attribute it to pills or chelation, I think, oh yeah, Mulan is doing that. And it’s not because of a pill or chelation, it’s because of good old-fashioned hard work!  There’s a short movie that someone at [name removed] suggested I watch.  It’s about how chelation has supposedly helped their children. It’s horrible! I thought that Mulan could easily be on that as well - I have pictures of her freaking of getting her picture taken, and then I could use her kindergarten picture, before hours of therapy and hard work, etc.

After seeing the piece on Dateline, and that clip from autism speaks, I am sick and tired of the “doom and gloom” attitude.  Dateline showed Mulan for approx. 4 seconds.  Both times, it appeared they tried to make her look like a freak.  The first time she was up close to the camera and making a face.  Those of us who know her, know that she’s vain and loves the camera.  My dad always has the video camera and will turn it around so Mulan can see herself.  Mulan was just doing her thing in front of the camera.  I could see any and all of my kids doing what Mulan was doing, especially if it’s edited carefully. I’m sure I could find all three of my kids looking like freaks - they’re kids!  Then they showed her getting her ears checked and she’s hand flapping.  Yes, because of autism Mulan is a hand flapper when she’s excited.  They couldn’t show the whole story let alone the fact that she’s a child with autism that has never seen this Dr. before, and was excited to have a check up. 

They could have shown Mulan socializing with her siblings or communicating with the doctor, but they didn’t do that.  Apparently Dateline would think it okay to have people believe that people with autism don’t socialize or communicate! Now I am going off on a totally different tangent, but I was sort of hoping that after seeing the show I would have changed my mind and decided to “go for it” with Mulan.  Instead, it just made me more adamant that I wasn’t going to do this to Mulan.  Before the show I just had a lot of fear.

Mulan has always been healthy. I’ve had her at the Dr. more than once convinced she had strep, and she didn’t.  Actually, her siblings get strep, and she doesn’t. It’s weird in a way, but I’m not complaining!  Mulan also hasn’t had any surgeries since she’s been diagnosed.  She’s had nothing medical done to her, so I have fear of doing anything medically unnecessary to her. Not that I wouldn’t do anything for her medically, I would in a heart beat if she needed it.  She doesn’t need DMSA, so I am choosing not to give it to her. 

I want to clarify that I don’t blame the medical community for Mulan’s autism - she was born with it, I know that.  I have seen my child take such great steps forward, that I fear giving her anything that might hurt her.  I still give her McD’s, and candy with all the food coloring in the world.  She will get an Icee at Target on occasion, just like her siblings.  I guess some might say those things might hurt her, but that’s called living, and Mulan is living and functioning in her own cool way.

I just had Mulan’s first habilitation worker quit. This woman is the coolest woman ever. I thanked her for helping Mulan become the weird free spirit that she is.  I love my weird free spirit, and I hope others can see how her free spiritedness is actually pretty cool, and not necessarily as weird as they first might think!

- Belle

~~~~~

Thank you for taking the time tell us more Belle. Your daughter is adorable!

Autism Diva’s notes on that autism speaks clip

Conuly’s notes on that autism speaks clip

Arizona Chelation Study Update

Will this research “fly”?

Remember that great scene in the movie “Toy Story” where Buzz Lightyear demonstrates to all the toys in Andy’s room that he can fly? Imagine that Buzz Lightyear represents the Arizona chelation study itself. Woody will play the part of a skeptic, and the rest of the toys will be parents trying to make heads or tails of what the research proves (whether or not Buzz Lightyear actually flys).

Toy:         Oh, uh, Mr. Lightyear, uh, now, I’m curious.
                  What does a Space Ranger actually do?           
 
Woody:    He’s not a Space Ranger! He doesn’t fight evil or..
                  or shoot lasers or fly!  
 
Buzz:        Excuse me.
                  (As he reveals his wings at the click of a button)

Toy:         Wow!                   

Toy:         Oh, impressive wingspan.
 
Toy:         Very good!             
 
Woody:    Oh, what? What? These are plastic. He can’t fly.    

Buzz:        They are a terillium-carbonic alloy, and I can fly.       
 
Woody:    No, you can’t.

Buzz:        Yes, I can.  
 
Woody:    You can’t.         

Buzz:        Can.               

Woody:    Can’t. Can’t. Can’t!
 
Buzz:        I tell you, I could fly around this room with my eyes closed!
 
Woody:    Okay, then, Mr. Light Beer, prove it.                 
 
Buzz:        All right, then, I will. Stand back, everyone.
                  To infinity and beyond!

Buzz then climbs the bedpost and leaps. He immediately nosedives towards the ground head first into a ball (kind of like this study getting rejected by the IRB at ASU). But the ball deflects him onto a Hot Wheel car and track where he’s catapulted through the loop and back into the air (kind of like this research being taken up by the Southwest College of Naturopathic Medicine). At the height of his ‘flight’ he sticks to a toy airplane suspended from the ceiling and takes a few spins around, that to many, could appear like flying in and of itself (a little like some TV coverage from NBC which apparently looked at this study, as research that might scientifically prove something one way or the other). Finally, he flings off the plane and tumbles to a landing back on the bed with the other toys.

Buzz:        Can!

Toy:         Whoa!
 
Toy:         Oh, wow! You flew magnificently!  
 
Toy:         I found my movin’ buddy.   

Buzz:        Thank you. Th-Thank you all. Thank you.                 
 
Woody:    That wasn’t flying. That was falling with style.

When NBC’s Dateline recently aired a brief segment about this study at the Southwest College Of Naturopathic Medicine (Matt Baral, Naturopath as the study’s principal investigator) it briefly rekindled my interest in the subject. Did the media have anything new to add? Would they have investigated it to the extent that they would have learned any details that parents trying to understand the science of this should have?

Did Dateline ask whether or not this research will “fly”? Will this research land back with the parents in a publication that is not a peer-reviewed mainstream medical journal indexed on Pubmed? Or, will it really “fly” and land with acceptance in the scientific community? At this point, the latter would seem a real challenge.

• It was rejected by ASU’s IRB.
• A questionable mail-order laboratory is being used.
• The study appears to employ non-standard methodology.
• There doesn’t appear to be any normative studies published in scientific journals indexed on Pubmed that support the methodology.
• No trained medical professional with board certification in toxicology or developmental pediatrics appears to be involved.
• It’s likely (although by no means certain) to reference other widely refuted research, as well as research that has simply never been published in peer-reviewed scientific journals indexed on Pubmed.

So Dateline apparently didn’t delve all that deep into the science itself. If they decided to investigate in earnest, I wonder if they’d ask about whether or not the children in this study even had mercury toxicity in the first place? I wonder if they’d ask about reporting spot urine mercury excretion levels (as opposed to 24-hour collection) as a ratio to creatinine. I wonder if they’d ask about creatinine.

The ASU professor could point them to the 2005 DAN! Consensus Paper on his ASU website where they can find:

“Creatinine is often found to be marginal in the urine of autistics, and low creatinine can skew urine analyte results to high levels. So, also take note of creatinine levels if the laboratory results include ratioing to creatinine.”

He could also point them to this new information, while not conclusive, that suggests that creatinine in autistics probably ought to be researched thoroughly, prior to determination that autistic children have mercury toxicity based on a non-standard (provoked) measurement expressed as a ratio to creatinine.

Spot urinary creatinine excretion in pervasive developmental disorders
Authors: WHITELEY, PAUL; WARING, ROSEMARY1; WILLIAMS, LEE2; KLOVRZA, LIBUSE1; NOLAN, FRANCES3; SMITH, SUSAN3; FARROW, MALCOLM4; DODOU, KALLIOPI2; LOUGH, W. JOHN2; SHATTOCK, PAUL5

Source: Pediatrics International, Volume 48, Number 3, June 2006, pp. 292-297(6)

“a significant decrease in urinary creatinine concentration was found in the PDD group compared to controls using a Mann–Whitney two-tailed ranks test”

“Issues regarding the use of single urine creatinine measurements and associated confounding variables are discussed in light of the findings, together with recommendations to use other internal or external standards for the quantification of urinary compounds in PDD research” 

Did the children who went to Phase 2 in this study really have mercury toxicity to begin with? Given the methodology and potential confounding issues, it doesn’t seem likely at all, but I could be wrong. Will the final paper include 24-hour urine collection and report creatinine levels to the scientific community so it can be seen if urinary analytes were artificially high due to ratioing to creatinine (that could potentially be lower than non-autistic peers)?

From notes on the autismone website, their recent conference in Chicago included a brief presentation/update about this study. I could be wrong about this, but it looks as though this study might be down to 12 participants. If that’s true, it doesn’t seem like (as I’d seen it so often described) a “large scale” study at all.

Will this study “fly” in the scientific community? Or, is it simply “Falling with style”?

Mark Geier and David Geier are pretty well-known among the autism biomed crowd. They co-authored the chelation study that claimed to show higher mercury levels in persons with autism along with Bradstreet, Kartzinel, and Adams.

A Case-Control Study of Mercury Burden in Children with Autistic Spectrum Disorders

It was never published in a peer-reviewed scientific journal indexed on Pubmed.

Additionally, they apparently claimed a drop in new autism cases in California (which aren’t necessarily new autism cases at all) following the removal of Thimerosal-containing vaccines. Mark Geier and David Geier also appear to be working on what some would consider pretty far-fetched biomedical autism treatments.

There seem to be several families pinning their hopes for a non-autistic child on what’s sometimes referred to as Mark Geier and David Geier’s “Lupron Protocol“. This is the one you may have heard about where it’s been claimed on some websites that mercury actually binds with testosterone (never mind the science that shows this happens at very high concentrations during dissolution in hot benzene - conditions not typically found in humans). To make a long story short, it had apparently been informally hypothesized that lowering the testosterone by administering Lupron will somehow free up bound mercury that can then be removed by chelation.

Is this for real? Are people actually buying in to this?

How about Mark and David Geier, did they really apply to patent this? Apparently yes, and the patent application looks to be supported by the Bradstreet et al. paper. Is it dangerous? What are Mark Geier and David Geier up to? What’s with all this mercury poisoning and testosterone stuff?

The Neurodiversity Weblog has some current events. Apparently, these current events include some not-so-current institutional affiliation, or institutional research affiliation that might not ever have been in the first place.

In the Geiers’ most recent article in Hormone Research, David Geier’s institutional affiliation is “Department of Biochemistry, George Washington University, Washington, D.C.”

[Addition: From the journal Hormone Research author guidelines on the Karger website: Title page: The first page of each paper should indicate the title, the authors' names, the institute where the work was conducted, and a short title for use as running head.]

According to the Chairman of the GWU Department of Biochemistry and Molecular Biology as reported at the Neurodiversity Weblog, the reality of this affiliation isn’t exactly like the Geiers may have apparently communicated it in writing to a scientific journal.

Dr. Goldstein stated unequivocally that David Geier has never served on the faculty of the Department of Biochemistry and Molecular Biology at GWU; that neither the “Institute for Chronic Illnesses” or its Institutional Review Board (that is, the committee that approves and supervises research on human subjects) are in any way associated with GWU; and that none of the research described in the article was sponsored by GWU or conducted in the GWU laboratories. He described the affiliation with the Department of Biochemistry in the Hormone Research article as “fallacious,” and stated that it conveyed a “significant misrepresentation” of Mr. Geier’s position in the field of biochemistry.

That’s sounds like an inaccuracy that a scientific journal’s editors wouldn’t like in print, so what happened to the research?

Two and a half weeks after its electronic publication, after the editors of Hormone Research learned about the erroneous affiliation, Mark and David Geier’s article was removed from the electronic version of the issue of the journal.

I recommend bookmarking the Neurodiversity Weblog, there’s bound to be more to the Lupron research story on the way. Discussion/comments are there as well.