It’s been said a number of times, and not just by me: The Thinking Person’s Guide to Autism is a book I wish someone had given me when we first received an autism diagnosis for our kid.
We purchased a few copies of the book. We gave them to our pediatricians. We’ve given them to other people. And, this week, we gave a copy to someone who just got an autism diagnosis for his kid.
A friend approached me with questions, school districts, insurance, etc.. After speaking with him, I took one of our extra copies of TPGA and handed it to him.
I thought that AutismOne might actually reconsider their promotion of giving bleach to disabled children.
Paint me naive again.
I thought that perhaps the Age of Autism blog would stay away from this, allowing it to sink into the past. The best I’ve seen so far is a non-pology from Kim Stagliano:
“AofA isn’t endorsing the protocol or slamming it – just providing perspective via one of our wonderful contributors.”
About par for the course.
While I am naive, I will say that I did expect that there would be a core of MMS users who would not take kindly to the discussion. And in this I am not surprised. Apparently, “investigative journalist” Kelly Stone has submitted a response to Todd Drezner’s Huffington Post article The Curious Case of Autism and MMS. I assume this is intended for the Huffington Post to publish. If so, Ms. Stone may be in for disappointment.
Todd Drezner’s “A Curious Case of Autism Exploitation”
By Kelly Stone
Investigative Journalist
In it Ms. Stone takes the attack on Mr. Drezner right away
Signature contributor to the Huffington Post, Todd Drezner, takes ‘blogging for dollars’ to a whole new level with his latest post on Autism. Drezner’s online column is little more than a clever marketing effort for his self-directed documentary, “Loving Lampposts: Living Autistic”.
Yes. It’s all supposedly about Mr. Drezner making money from his movie “Loving Lamppoosts“.
As an aside, Ms. Stone seems to have difficulty with the concept of what a director is in film-making. The term “self-directed” is very odd in this context.
After introducing and attacking Mr. Drezner, Ms. Stone then takes on attacking Emily Willingham, Ph.D..
Willingham, known elsewhere as “Daisy May Fatty Pants” is a contributor to “A Thinking Person’s Guide to Autism”. – According to the Child Health Safety blog, Willingham is a “self-professed scientist with selective blindness to basic observations”. All too à propos, Drezner and Willingham team up in their petition to denounce chlorine dioxide therapy as “child abuse”, a sobering case of irony given it could be the very thing its signers have been looking for.
Ms. Stone, investigative journalist, is welcome to do just a little more digging than the junk blogs she’s read and discover that Emily Willingham is much more than a “self-professed” scientist. A simple google search (which I assume Ms. Stone did, then ignored the results) will quickly get one to http://www.emilywillinghamphd.com/. Her biography includes:
I have been a dedicated writer since about 1972 and practicing science since 1996. My background, as I say in cover letters, includes a bachelor’s degree in English and a PhD in biological sciences, both from The University of Texas at Austin, with a completed postdoctoral fellowship in pediatric urology at the University of California, San Francisco. Throughout, my focus was vertebrate development and genetics, specifically how gonads and penises develop. Talking about my work has always carried a frisson of the risque.
I’ve seen Ms. Willingham’s publication list. It is impressive. Which is just one point of many which can be used to say: Emily has the chops to call herself a scientist. Frankly if you don’t follow her writing, I’d recommend you do. (Thinking Person’s Guide to Autism and Biology Files are two good places to see her work).
Ms. Stone, investigative journalist, moves into defending MMS. First she pulls a quote from a US Patent. Notably, I only find references to this patent on (a) patent search sites and (b) MMS sites. Ms. Stone appears to have not done much investigation.
Here is her discussion of the patent:
However, based upon clinical research, a 1993 U.S. Patent (No. 6086922) states the following facts about sodium chlorite and chlorine dioxide:
“It is therefore quite unexpected that, with an intravenous administration of an appropriate chlorite matrix in the appropriate concentration, HIV viruses can be directly combated in the blood… The chlorite matrix solutions of the present invention also do not exhibit adverse effects such as severe cytotoxic damage and the like, typically associated with highly toxic chemicals which are administered intravenously [i.e. vaccines]. The chlorite matrix solutions of the present invention further are capable of inactivating the HIV virus to thereby inhibit infection of undamaged cells.”
Wow! Did you read that? Chlorine dioxide, via sodium chlorite (aka “MMS”), is effective at “combating”, “inactivating”, and “inhibiting” HIV, without any “adverse effects”. Why doesn’t your doctor know about this? I have a few ideas, but let’s put that aside and stick with the facts.
Let’s put that sentence from the patent back into context, shall we. And emphasize a few points while we do:
However, the use of chlorite solutions for parenteral administration typically was not thought to be possible because of their extraordinary toxicity.
It is therefore quite unexpected that, with an intravenous administration of an appropriate chlorite matrix in the appropriate concentration, HIV viruses can be directly combatted in the blood, demonstrated by the rapid and strong decrease of the viruses detectable in the blood.
First notice that the [i.e. vaccines] was added by Ms. Stone or someone else. Second, notice that the inventor notes that these solutions have “extraodinary toxicity”, but by chosing the “appropriate concentration” they can find a solution which they think is viable.
Appropriate concentration. Sounds a lot like “dose makes the poison”, right?
How does one chose the “appropriate concentration” of MMS? By upping the dose until the subject is obviously sickened. From the MMS handout for AutismOne
Weird things can happen when we begin using MMS
The immune system wakes up and sometimes we find the body detoxing an old cold, flu or rash. It is common to find that the child gets a fever. This is good.
There is so much pseudo-science in that statement it is difficult to imagine someone presenting that with a straight face. No evidence that the fever is due to “detoxing an old cold” or the other nonsense.
Ms. Rivera even has a slide devoted to “Fever Therapy with MMS”, essentially telling parents to dose their kids until they have a fever reaction.
One need only do a simple internet search for MMS and nausea to see that this is a common and expected reaction to MMS. Some people try to paint this nausea as a “good sign” as well.
Back to Ms. Stone. And the patent she cites to defend the use of Chlorine Dioxide. Here’s another section of that patent:
A significant inhibition of a new infection is found in vitro even at concentrations of 5 micro-mo1/l, whereas a concentration of 150 micro-mo1/l brings about a practically complete inhibition. However, concentrations of more than 100 ,micro-mo1/l can, over a prolonged period of time, lead to cytotoxic damage. Thus, concentrations of from 10 to 100, preferably of from about 40 to 80 and especially of 50 micro-mo1/l are preferred.
So, the dose described in the patent is chosen to avoid cytotoxic damage. They can’t reach the concentrations needed for complete inhibition of HIV due to this limit.
Apparently, investigative reporter Kelly Stone didn’t read the full patent as she makes the blanket statement:
OK, so sodium chlorite and chlorine dioxide are relatively safe to use intravenously, but what about oral ingestion, is that safe? A very good question; one Drezner might have thought to research.
I guess it depends on your definition of “relatively safe”.
When considering the value of this patent, keep this in mind. There’s an old saying: patents don’t have to be correct, they have to be novel. (think of Andrew Wakefield’s vaccine patent for an example of an idea which wouldn’t work but was patented). When was the last time, or only time, you heard someone talk about treating HIV patients with IV bleach?
If you are like me, the answer is never. The invention appears to have never been used. Well, never used except to defend MMS.
As an aside–another of the arguments has been, “of course Big Pharma would downplay this. They can’t patent it and make money off of it”. Then why did Oxo Chemie of Switzerland patent this?
In her attempt to paint Todd Drezner as a profit-driven Ms. Stone quotes from Mr. Drezner’s documentary:
“Autism is a gift disguised as a dilemma”, a profound take-away from Drezner’s documentary; but rest assured Drezner’s film isn’t a “gift” to the Autism community. No, you’ll have to buy the DVD, or have a paid Netflix account to watch it.
That’s exactly the kind of propaganda the medical-industrial complex can really get behind. Build your world around Autism! Accept it, don’t fix it! To quote the documentary, “You ‘cure’ hams… and ‘treat’ people.” This is the standard medical line. There’s no money in curing, only in perpetual treatment… well, that and selling DVDs.
Actually, you can see the segments she discusses online. And in those segments you can see that the comments are not made by Mr. Drezner. “Autism is a gift disguised as a dilemma” and “You ‘cure’ hams… and ‘treat’ people.” are quotes from Sharisa Kochmeister, autistic adult featured in Loving Lampposts.
It’s rather a stretch for the author to claim that Ms. Kochmeister is somehow involved in profiting from the lack of an autism cure.
This article is already rather long so rather than go on point by point in response to Ms. Stone’s attack, I’ll skip to the end of her piece:
Much unlike Drezner, we will be contacting the parents of the children that have reportedly made significant improvements using MMS, and we are currently collecting case by case clinical data showing MMS does what those singing its praises claim.
The thought crossed my mind; who’s underwriting Drezner, someone with ties to the FDA or Big Pharma? In a huge effort to not allow myself to be given over to absolute speculation like Drezner, I will wait and report my findings when they become factual.
Surprised by this conclusion? Both the “we have anecdotes” claim and the “pharma shill” gambit, with the “I’m more open minded because while I am attacking him, I’ll reserve final judgement until I have evidence” approach.
Would that she applied the same reasoning to MMS. As in waiting for evidence. Not anecdotes, evidence. How about at least something speaking more to biological plausibility. Again, paint me naive. The website she works for has already defended MMS using the anecdote defense.
Ms. Stone writes for the US~Observer. My strong suspicion is that her article will end up there with a complaint that even the Huffington Post wouldn’t take her article. But, we are talking about the Huffington Post. I’ve been caught being naive before.
Autism Speaks has a new president: Liz Feld. She was previously the Executive Vice President for Strategic Communications. The replaces Mark Roithmayr, the first full time president of Autism Speaks. Mr. Roithmayr resigned suddenly.
Ms. Feld has a great deal of experience in areas of communication and politics. But she appears to be an outsider to the autism communities.
As a relative newcomer to Autism Speaks and an apparent outsider to the autism communities, will Ms. Feld change direction for Autism Speaks? Autism Speaks seems more careful about the negative messages than in the past (one video has apparently been removed from the Autism Speaks website and YouTube channel for example).
The press release is quoted below.
NEW YORK, NY (June 19, 2012) — Autism Speaks, the world’s leading autism science and advocacy organization, today announced that Liz Feld, a respected executive with a strong track record of accomplishment in both the public and private sectors, has been named the organization’s new president. The appointment, which is effective immediately, was announced by Autism Speaks Co-founders Bob and Suzanne Wright. Mark Roithmayr has resigned as president after serving in the position since 2005.
Liz Feld
“Liz’s history of strong, results-oriented leadership, together with her clear vision for the future of Autism Speaks, makes her the ideal person to move us forward in our work to improve life for people with autism and their families,” said Bob Wright. “Autism Speaks is poised to accomplish even greater things in our advocacy work, in the scientific research we fund and in services and resources we provide to families. Liz will ensure that we realize our goals and meet our responsibility to those we serve.”
“We are so grateful to Mark for having guided Autism Speaks over the last seven years,” said the Wrights. “His passionate leadership and tireless efforts helped us grow from an emerging charity to the leading autism science and advocacy organization in the world. Mark always displayed an undying commitment to our army of volunteers and the autism community around the globe. We thank him for his tenacity and his dedication to our families.”
Commenting on the appointment of Feld, who joined Autism Speaks in 2012 as executive vice president of strategic communications, Suzanne Wright stated, “I am thrilled that Liz has agreed to step into the role of president of Autism Speaks, and excited by the prospect of what we can accomplish working together under her leadership. Liz believes passionately in our mission and our community. Her proven ability to build consensus and get things done will be a tremendous asset to Autism Speaks and our cause.”
Before joining Autism Speaks, Feld served for four years as the mayor of the Village of Larchmont in Westchester County, NY. She was elected mayor on a fiscal reform platform in 2006, after having served as deputy mayor (2003-2006) and trustee (2002-2006). As mayor, Feld secured more than $4 million in federal, state and local grants to support local programs, and restored the village surplus to $2.3 million, resulting in the village’s first AAA credit rating from Moody’s Investor Services.
Feld has devoted much of her career to public policy and strategic communications. She served in the White House from 1984-1987, as public affairs specialist in the White House Office of Management and Budget and press officer for Vice President George H.W. Bush during the Reagan administration. She was director of news information at ABC News and senior vice president for communications for Nickelodeon. Prior to that, she worked at Robinson, Lake, Lerer & Montgomery, a strategic communications and public affairs firm.
In September 1999, Feld helped launch the Million Mom March, a national grass-roots organization established to promote sensible gun safety legislation. She is a member of Mayors Against Illegal Guns, co-founded by New York Mayor Michael Bloomberg and Boston Mayor Thomas Menino. Feld also serves as a board member of New Yorkers for Growth, a leading New York State fiscal reform group.
Feld holds a B.A. in Government and Political Theory from Georgetown University.
Any hope for a change is tempered by this section of the press release where we are again given the epidemic concept.
About Autism
Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors. An estimated 1 in 88 children in the U.S. is on the autism spectrum – a 1000 percent increase in the past 40 years that is only partly explained by improved diagnosis.
Will there be change? It doesn’t make sense for Autism Speaks to change leadership, especially so suddenly, if not for some change in direction.
What that potential change may be we will have to wait to see. The press release gives little insight into such details.
Autism Speaks has chosen a new president. Mark Roithmayr, the former president, has resigned.
From their press release:
Autism Speaks, the world’s leading autism science and advocacy organization, today announced that Liz Feld, a respected executive with a strong track record of accomplishment in both the public and private sectors, has been named the organization’s new president. The appointment, which is effective immediately, was announced by Autism Speaks Co-founders Bob and Suzanne Wright. Mark Roithmayr has resigned as president after serving in the position since 2005.
Ms. Feld is fairly new to Autism Speaks, having only joined this year. She was Vice President of Strategic Communications. For those curious as to what a vice president of Executive Communications does, the old Autism Speaks webpage for their leadership listed her as:
Liz Feld – Executive Vice President of Strategic Communications
with these two people listed under her:
Dana Marnane – Vice President — Awareness and Events
Bill Shea – National Director of Creative Services
What direction she will take Autism Speaks in is not immediately clear.
That program was supported by the Mitsubishi Electric America Foundation (MEAF). If you feel grateful for their support of this program, you can contact some of the executives of the Foundation.
I can’t take credit for finding those links. That credit goes to the “Canary Party”. Never heard of them? Well, they are an offshoot of groups like SafeMinds and others. The sort who are behind the blog, Age of Autism.
No, they didn’t collect those links in order to thank the Foundation for their efforts. They wanted their membership to complain. They have a webpage (Mitsubishi Funds Group that Opposes Preventing or Curing Autism). Their discussion is rather long, but the main points are copied below. (The original has formatting problems which they don’t seem to want to fix.)
Despite the many worthwhile autism charities desperately in need of funding, Mitsubishi Electric America Foundation (MEAF) has chosen to fund one that:
1) opposes all efforts to cure or prevent autism, denies an increase in autism prevalence and now seeks to promote this form of “activism” among college students nationwide.
2) blatantly violates MEAF’s own stated guideline: “We do not fund organizations or programs connected with a controversial social or political issue.” MEAF is funding a “neurodiversity” initiative by ASAN (Autism Self Advocacy Network) – highy controversial in the autism community. According to ASAN, “The training is meant to prepare students to engage in self-advocacy and pro-neurodiversity activism on their college campuses.”
3) promotes “self-diagnosis” of autism, causing students who may have the disorder to not qualify for college disability support services and national testing service accommodations, thus diminishing, not “enhancing” chances for academic success and future employment. “Self-diagnosis” (without medical confirmation) of any disability, disease or disorder is an irresponsible practice and should not receive corporate funding.
4) does not promote “full inclusion of people with disabilities alongside their peers without disabilities,” as called for in Mitsubishi guidelines, but promotes segregation of people with disabilities in extracurricular activities.
Yes, the “canary party”, a group devoted to promoting the failed “mercury in vaccines caused an autism epidemic” idea is claiming that ASAN is “highly controversial”. A group spreading fear of vaccines is pointing fingers claiming someone else is “irresponsible”.
Take the time. Click on the links. Let the good people at Mitsubishi know that people appreciate their support.
Science Insider has been reporting on the research and, well, drama surrounding the idea that XMRV (Xenotropic murine leukemia virus-related virus) and its proposed link to chronic fatigue syndrome.
XMRV has also been proposed as being linked to autism.
There has been a lot of controversy over the research (for example, Science retracting one paper) as well as Ms. Mikovits. Judy Mikovits was let go from WPI and later charged with having materials removed from the institute. Charges around that have been dropped , but a civil case is still active.
Last November, the district attorney in Washoe County, Nevada, filed a criminal complaint against Mikovits that charged the virologist with illegally taking computer data and related property from her former employer, the Whittemore Peterson Institute for Neuro-Immune Disease (WPI) in Reno, Nevada. In a separate civil court that month, WPI filed suit against Mikovits over her alleged possession of similar material, which included the laboratory notebooks she compiled while doing the CFS research.
On 11 June, the district attorney’s office for Washoe County filed a petition to dismiss the criminal charges against Mikovits without prejudice (which means they can file a related complaint in the future), a clerk to the Justice Court of Reno told ScienceInsider.
Ms. Mikovits joined the team of Ian Lipkin who is part of the multi-site team investigating the proposed XMRV/CFS link:
Mikovits told ScienceInsider that the only work she has been able to find has been collaborating on a large study funded by the National Institutes of Health that should be the final word on the otherwise dismissed theory that CFS is linked to a mouse retrovirus, XMRV, or its relatives. “Everyone who wanted to work with me was deterred by the threat of litigation,” Mikovits wrote in an e-mail.
The results of the large study, led by Ian Lipkin of Columbia University, are expected to be revealed in the next few weeks.
The proposed XMRV/autism link was made public before any scientific results were made available. However, two papers have been published since that news broke pointing away from an XMRV/autism link
The Autism Science Foundation has a new fundraiser: CDSWeep. The idea is simple–you send them your old CD’s and DVD’s, they send you digitized copies and resell the disks with proceeds going to fund autism research. They even send you the packaging materials for the shipment.
Do a clean sweep of all your unwanted CDs and help fund autism research. Just box up all of your unwanted CDs and DVDs, ship them free with prepaid FedEx labels. Each disc you send means a 50 cent donation to ASF. It’s really that easy!
Go to www.CDSweep.com, enter the number of discs you’re sending, and you’ll be emailed a prepaid FedEx label to ship them all for free. You can even request that your CDs be digitized to MP3s and sent back to you for free.
Have a question about this new donation program? Email us!
Now for the commentary: When I got my first CD’s, I was happy to be a consumer of a new technology. No more scratchy records. No more tape hiss. My father had a huge collection of 78’s still and, while they were cool, they were old technology.
I’m becoming my dad. I’ve got my horde of music on a technology which seems to be going away. Will my family sift through the recordings for the gems of a bygone era? Heck, some of my CD’s are re-releases of recordings from before I was born (heck, a couple from even before my father was born!).
That said, I wanted my father to set aside his 78’s. I wish I still had them. The tapes I made are long gone. If only I could have digitized them. But, some I wish I had as 78’s. Like an original of Stan Kenton’s remake of “The Peanut Vendor”.
Never heard of it?
But I digress. Is it time to reclaim all that space in my CD cabinet? If so, whatever goes will be sent off to support autism research. www.CDSweep.com
Todd Drezner, who brought us the wonderful film “Loving Lampposts”, has a new article up at the Huffington Post: The Curious Case of Autism and MMS.
I’m going to say something radical, something that may shock you. Brace yourself. Are you ready? Here goes:
It’s not a good idea to make children drink bleach.
If you’re not familiar with the autism community, you may wonder why my statement would ever be considered controversial. Unfortunately, in the autism community, where there are disagreements about everything, even this seemingly straightforward statement causes arguments.
It’s worth a read and a comment. Even though it is painful to read.
Jenny McCarthy is the head of Generation Rescue, a charity which promotes the idea that there is an epidemic of autism caused by vaccines. Ms. McCarthy has been the keynote speaker at the AutismOne conference (which is now co-hosted by Generation Rescue) every year for the past five years.
At this year’s AutismOne keynote, she spoke about the difference between the parents who use alternative medicine on their children (“Warrior Moms”) and those who don’t (“Victim Moms”). Here is the video. At about seven minutes in she talks about the moms who “fall into this victim role, and they like it”
“They didn’t get attention in their lives and then this incredible door opens…and they’re loving it”
This isn’t a new message for her. In her first book (Louder than Words) she’s had a similar message. From Louder than Words:
As we continued to talk about alternative treatments for our children, I noticed the room separating into two sides. We were no longer talking as a whole anymore. There was a group of moms who didn’t want anything to do with what we were talking about. They slumped into a corner and had a “woe is me” attitude. I decided to eavesdrop on both conversations.
The “woe is me” moms were talking about how they didn’t get to shop or go to the beach with their friends anymore, and the “I’ll try anything if it will help my kid recover” moms were trading success stories about the latest treatments.
And, later…
“My other theory was that they enjoyed the victim role. I know that might sound mean, but I’m sure you’ve met people who are constantly having shit go wrong in their life. They complain and play the “don’t you feel sorry for me” game.
For this observer, this is some combination of sales-pitch/motivational-speaker. Ironically, Ms. McCarthy’s followers like to portray themselves as non-judgmental.
An Autism Dad takes on this “victim” vs. “warrior” stance Jenny McCarthy creates in A Note to Jenny McCarthy
Jenny McCarthy has been back in the news lately. Partly because she’s going to do another photo shoot for Playboy. The reason? To make money to help pay for her son’s school. I’ve seen reports that she told people at AutismOne that the tuition is $3,000/month, and Howard Stern that it is over $100,000 per year.
I wish that kid all the best. I wish him well. I also wish that perhaps when people throw out terms like “recovered” and “no longer autistic” to promote the vaccine-hypothesis and alternative therapies, that those people would give more details about how far “recovered” is from “cured”.
Here’s how she characterized her son’s recovery on the Larry King Live show
MCCARTHY: A lot of these kids have Candida, which is yeast — overgrowth of yeast. By giving them anti-fungals, like Diflucan. After I cleaned out Evan’s Candida — and I’m going to say this very clearly — he became typical. He started speaking completely. His social development was back on. He’s now in a typical school. He got that much better. And my story is not alone. I have — recoveryvideos.com, by the way, has pictures and stories.
In 2007, her son “became typical” and now he needs a $100,000+/year special school? I wish him well. I also wish that there was more transparency and accurate information from his mother.
Perhaps she could drop the victim mom/warrior mom schtick and give us honest mom.
Please save the date Tuesday, July 10, 2012 for the first meeting of the Interagency Autism Coordinating Committee (IACC) under the Combating Autism Reauthorization Act. OARC will post additional meeting details to the IACC website, http://iacc.hhs.gov/events/, as they become available in June and early July.
Members of the community may also be interested in the following updates:
· This year’s International Meeting for Autism Research (IMFAR) in took place in Toronto, Canada from May 16-19, 2012. Many members of the public and advocacy community participated, including several IACC members. OARC Acting Director, Dr. Susan Daniels, gave a presentation on behalf of the OARC/IACC and NIH at the meeting and the slides are posted on the IACC website at: http://iacc.hhs.gov/non-iacc-events/2012/slides_imfar_susan_daniels_051712.pdf. The presentation includes an update on the IACC, a preview of the data from OARC/IACC publications that will be released this summer, an update on the NIH Autism Centers of Excellence, and a challenge to the research community to embrace data sharing to advance autism research. The video clip from the presentation will be posted on the Non-IACC Meetings and Events web page as soon as it is available.
· On May 21, 2012, IACC Chairman, Dr. Thomas Insel published a blog highlighting the critical need for increased data sharing across scientific fields, including ASD research: “Time Matters – Why We Care So Much About Data Sharing.”
· The American Psychiatric Association is accepting public comment until June 15, 2012 on proposed changes to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) . For more information, please see the APA website at: http://www.dsm5.org/Pages/Default.aspx.
We hope everyone has a safe and enjoyable holiday weekend.
Sincerely,
The Office of Autism Research Coordination
Note: I am one of the public members slated to be a part of the IACC.
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