Archive | June, 2012

How Does Relaxing the Algorithm for Autism Affect DSM-V Prevalence Rates?

28 Jun

There has been much discussion of the impact the DSM 5 will have on who will be diagnosed with autism. Another paper exploring this came out yesterday: How Does Relaxing the Algorithm for Autism Affect DSM-V Prevalence Rates?. The abstract is below:

Although it is still unclear what causes autism spectrum disorders (ASDs), over time researchers and clinicians have become more precise with detecting and diagnosing ASD. Many diagnoses, however, are based on the criteria established within the Diagnostic and Statistical Manual of Mental Disorders (DSM); thus, any change in these diagnostic criteria can have a great effect upon children with ASD and their families. It is predicted that the prevalence of ASD diagnoses will dramatically decrease with the adoption of the proposed DSM-5 criteria in 2013. The aim of this current study was to inspect the changes in prevalence first using a diagnostic criteria set which was modified slightly from the DSM-5 criteria (Modified-1 criteria) and again using a set of criteria which was relaxed even a bit more (Modified-2 criteria). Modified-1 resulted in 33.77 % fewer toddlers being diagnosed with ASD compared to the DSM-IV, while Modified-2 resulted in only a 17.98 % decrease in ASD diagnoses. Children diagnosed with the DSM-5 criteria exhibited the greatest levels of autism symptomatology, but the Mod-1, Mod-2, and DSM-IV groups still demonstrated significant impairments. Implications of these findings are discussed.

Without the full paper it is difficult to compare the modified criteria. Also, from the abstract alone we can’t tell much about the methodology of the application of the DSM 5 and the two modified criteria. Keeping those very large caveats in mind, this study points to a lower rate of autism diagnoses for toddlers under the DSM 5, even with modifications. The study does not appear to address the question of the effect of the DSM 5 on diagnosing adults.

35 Nobel Laureates are all in the pocket of Big Pharma?

27 Jun

Yes. A group of 35 Nobel Laureates has been accused of working with the “vaccine industry”. Those familiar with the online discussions of autism and vaccines will likely be unsurprised that this claim comes from the Age of Autism blog. Given the odd nature of this claim, most will likely be unsruprised that this will take some lenghthy introduction.

The article at the Age of Autism is Write the President of Cameroon to Defend Dr. Luc Montagnier, which opens so many questions. Why do they want to defend Luc Montagnier? Why would one write the president of Cameroon to do so?

Luc Montagnier received the Nobel Prize in medicine in 2008. His research has since moved into some rather questionable territory. For example, he claims that DNA from bacteria can, in highly diluted samples, induce low frequency electromagnetic radiation. This brings us to his connection to the autism communities. He claims that he can detect the electromagnetic radiation from the blood of autistic children, but not from non-autistic children. He claims that this radiation is a sign of pathogentic bacteria, and, further, claims that based on this one might treat autism with long term antibiotic therapy.

Here is part of his summary from when he presented these ideas at AutismOne this year:

There is in the blood of most autistic children — but not in healthy children — DNA sequences that emit, in certain conditions, electromagnetic waves. The analysis by molecular biology techniques allows us to identify these electromagnetic waves as coming from already known bacterial species. This correlation, which is based on more than one hundred children of European origin, naturally does not prove a causal relationship. However, a therapy first started by a group of independent clinicians and now performed in conjunction with laboratory observations reinforces the idea that systemic bacterial infections play a role in the genesis of symptoms of autism.



These are, to put it politely, extraordinary claims. They are without the extraordinary evidence which would support them.

Those with experience following the autism/vaccine discussion will not be surprised that even with these odd claims, the alternative-medical community has embraced Luc Montagnier eagerly. He has a Nobel Prize, after all. And these groups have shown a strong desire to establish some credibility. Most of their proponents are non-medical specialists (think Kerri Rivera whose presentation at AutismOne promoted using a bleach as an oral and enema-based “therapy”) and their medical specialists include people whose reputations are less than stellar (for example, Andrew Wakefield and Mark Geier).

Luc Montagnier ties his theory into the permeable-gut theory of autism.

Our working hypothesis is that immune dysfunction associated with inflammation of the intestinal mucosa leads to the introduction of bacterial components, including neurotoxins,
into the bloodstream, creating oxidative stress as well as microvascularities, especially affecting meningeal vessels and finally specific neuronal damage.




And questions whether risks are worth the benefit for vaccines in the modern world
:

My position on vaccines has not changed over the last 30 years: the principle has proved to be excellent in the past. Smallpox has been eradicated in the world thanks to the use of vaccination, with attenuated vaccinia virus. But some had to pay a horrific price: encephalitis in a certain number of children. Over the years, vaccinations against bacteria and viruses have multiplied, appearing as the most cost-effective way to prevent epidemics. However, side effects are becoming more important and a single death cannot be tolerated any longer. Many parents have observed a temporal association – which does not mean causation – between a vaccination by puncture and the appearance of autism symptoms. This should not be neglected by the medical community and public health decision makers. It is therefore of prime importance to study the risk factors, both environmental and genetic, which could be involved in order to prevent them. Presumably, vaccination, especially vaccination against multiple antigens, could be a trigger of a pre-existing pathological situation in some children. The vaccine denialists are not the courageous individuals who raise the problems of vaccination accidents, but are those people who deny the existence of these tragic accidents. The latter believe in the dogma “vaccines are good”, period. They are forgetting the Hippocratic oath: primum, non nocere. First, do no harm.

He has credentials. He claims to have a potential cause and potential treatment for autism. He supports the gut-brain theory and is openly skeptical about the way vaccines are used. Is there any surprise that the vaccines-cause-autism/alternative-medicine groups support him?

A news article on the Nature website discusses some recent controversy involving Luc Montagnier. In Nobel fight over African HIV centre Declan Butler writes

A fledgling AIDS research centre in Cameroon, already struggling to find a scientific leader, is now facing insurrection from an unlikely quarter: a group of 35 Nobel prizewinners.

The laureates are calling for the centre’s interim scientific director, fellow prizewinner Luc Montagnier, to be removed from the part-time post. Observers say that unless the leadership crisis is resolved quickly and decisively, it could harm the prospects of the Chantal Biya Inter­national Reference Centre (CIRCB) in Yaoundé.

Yes, 35 Nobel Laureates have signed a letter asking an AIDS center in Cameroon to reconsider hiring Luc Montagier in a part time post.

The laureates argue that his embrace of theories that are far from the scientific mainstream, as well as what they claim are anti-vaccination views, risk hurting the CIRCB’s research, health-care programme and reputation. Montagnier has suggested, for example, that water can retain a ‘memory’ of pathogens that are no longer present1; that the DNA sequences of pathogens emit electromagnetic waves that could be used to diagnose disease2, 3; and that stimulating the immune system with antioxidants and nutritional supplements may help people to fight off AIDS4.

1) Montagnier, L., Aïssa, J., Ferris, S., Montagnier, J.-L. & Lavalléee, C. Interdisciplin. Sci. 1, 81–90 (2009).

2) Montagnier, L. et al. Preprint at http://arxiv.org/abs/1012.5166 (2010).

3) Montagnier, L. et al. Interdisciplin. Sci. 1, 245–253 (2009).

4) Butler, D. Nature 468, 743 (2010).

One could argue that it is this last point which is the most important, and the likely strongest motivation for the group of Laureates to write their letter. From reference 4:

Since then, Montagnier has supported non-mainstream theories in AIDS research that have put him at odds with other scientists. Most recently, he has argued that strengthening the immune system with antioxidants and nutritional supplements needs to be considered along with antiretroviral drugs in fighting AIDS, in particular in Africa.

“Montagnier’s embrace of pseudoscientific and fringe agendas over the past few years has been seized on by AIDS denialists and other fringe groups, who make the case that Montagnier now supports their crazy views,” says John Moore, an AIDS virologist at Cornell University in New York. Montagnier says that AIDS denialist groups misrepresent his thinking.

My suspicion is that the group of 35 Nobel Laureates are very concerned that an AIDS treatment center in Africa might take a path towards non-scientifically based treatments.

The Nature news article does mention Luc Montagnier’s connection to the autism communities:

The last straw for Montagnier’s critics seems to have been his appearance in May alongside vaccine sceptics at a conference in Chicago, Illinois, organized by US patient-advocacy groups AutismOne and Generation Rescue. Montagnier’s talk, on his hypothesis that bacterial infections may be one of many causes of autism spectrum disorder, states: “There is in the blood of most autistic children — but not in healthy children — DNA sequences that emit, in certain conditions, electromagnetic waves.”

The same groups who greeted a single Nobel Laureate with such vigor have now 35 other Nobel Laureates who consider this move by Luc Montagnier to be “the last straw” in his actions. That is a rather stunning rebuke.

And, as already alluded to above, a rebuke which has not gone unanswered. The Age of Autism blog is calling for support for Luc Montagnier. Their article, Write the President of Cameroon to Defend Dr. Luc Montagnier, begins:

A recent article in Nature shows that the vaccine industry has been closing ranks against Dr. Luc Montagnier ever since his brilliant lecture at AutismOne last month. In particular, 35 Nobel Laureates, led by one who sells commercial products to the vaccine industry, sent a letter to the President of Cameroon protesting Dr. Montagnier’s leadership position on a national research organization dedicated to HIV research.

Immediately we read that it is the “vaccine industry” closing ranks against Luc Montagnier, and the Nobel Laureates are led by one with a link (however tenuous) to the vaccine industry.

What is more stunning in this article is the fact that they never address the simple question of whether it would be good for the AIDS community in Cameroon to have Luc Montagnier on board at the Center. The letter is entirely focused on arguments that vaccines cause autism.

In conclusion, the evidence to date shows that Dr. Luc Montagnier’s serious consideration to the vaccine-autism connection is as correct as his original discovery of the Human Immunodeficiency Virus. Please do not cave to the coercive and corrupt powers of the vaccine industry, which includes an old rival who previously tried to take credit for Dr. Montagnier’s Nobel Prize-Winning discovery of HIV. We believe that through his work on autism, Dr. Montagnier has further demonstrated a level of scientific rigor and innovation of unparalleled accomplishment that could hold significant promise for patients suffering from AIDS, as it does for patients with autism.

What the autism/vaccine discussion has to do with Cameroon’s decision whether to keep Luc Montagnier on board for an AIDS center is not a part of the letter. This letter has frankly nothing to do with Cameroon’s decision whether to keep Luc Montagnier on board at an AIDS center. It is just a rundown of the rather weak arguments behind the vaccine-autism proposed link, with a liberal dose of “coercive and corrupt” powers language. This may come as a bit of a harsh surprise to the author of the letter, but, this letter will only serve to help convince the President of Cameroon to let Luc Montagnier go.

It is likely that the president of Cameroon will not do much fact checking, but should he chose to, here’s one section that takes no interpretation:

The latest CDC Autism and Developmental Disabilities Monitoring Network report from one US state found a 20% decrease in autism spectrum disorder prevalence in children born in 2000, the first year after a joint statement was made in the United States by the American Academy of Pediatrics and the US Public Health Service calling for thimerosal to be removed as soon as possible. This is the first statistically significant decrease in autism reported in this surveillance system’s decade long-history.

The prevalence estimate went from 1 in 110 to 1 in 88. That’s an increase.

Here is Luc Montagnier’s own response to the letter submitted by the 35 Nobel Laureates: Luc Pr Luc Montagnier HIV – AUTISM – VACCINES: FACTS and HOPES

The need for tissue donations

26 Jun

The recent loss of tissue from one of the tissue banks is a major setback to autism research. Tissue, brain tissue in particular, is an incredibly scarce resource. This loss only highlights the need for tissue and the need for individuals and families to plan ahead on the question of tissue donation.

The Simons Foundation has a discussion of this in: Guest blog: The case for brain donation was written by Autism Science Foundation’s Alison Singer.

She addresses the fact that no one wants to think about being in a position to be a tissue donor, but that advanced planning is critical:

Fortunately, my daughter with autism is alive, happy, energetic (sleepless, in fact) and vivacious. I can’t imagine her any other way. Donating her brain is not something I really want to think about, but as parents of children with autism, we have to. And we have to think about it now, in advance of the period of grief and confusion that follows the loss of a child or other family member.

She refers people to the Autism Tissue Program website. The ATP is run by Autism Speaks.

Autism organizations–Autism Speaks, Autism Science Foundation, Simons Foundation–are all working towards the goal of improving access to tissue samples for research.

ATP has information on donation and registration for donation.

Another place to register isThe Eunice Kennedy Shriver NICHD Brain Tissue Bank. You (either as an autistic or a non-autistic relative) can register there.

The book I wish someone had given me…

26 Jun

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.

From defense of MMS to attacks

21 Jun

When I first heard of Miracle Mineral Solution (aka MMS) and it’s presentation at AutismOne, I thought that here was something so obviously bad in both theory and execution that pretty much anyone who took a critical look would agree: why is this faux therapy being promoted?

Paint me naive.

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.

Ms. Stones’ response is on an MMS discussion forum.

Huffington Post – Negative Exposure

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.

What will Autism Speaks look like now?

20 Jun

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.

While it is unclear why Mr. Roithmayr left, he was clearly a proponent of the concept of the autism epidemic. Also, under his tenure autism speaks has promoted a negative image of autistics which has drawn a great deal of criticism. The video “I am Autism” being a prime example. Autism Speaks has chosen a very nuanced approach to the question of vaccine causation.

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 names new president

20 Jun

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.

Ms. Feld was previously in the political sphere, having served as Mayor of Larchmont (in New York State) and having tried a run for the New York state senate.

Mr. Roithmayr wrote in response to the new CDC autism numbers Autism Is a National Epidemic That Needs a National Plan.

No clear news on why Bob Roithmayr is leaving. Or whether this is as sudden as it seems from the outside.

Thank Mitsubishi for supporting an Autism Campus Inclusion Leadership Program

19 Jun

In February I posted an email from the Autistic Self Advocacy Network describing their program for this summer:

ASAN Invites Autistic College Students to Autism Campus Inclusion Leadership Training

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.

Katsuya Takamiya, President and CEO:
http://tinyurl.com/786gdcg

Kevin R. Webb, Director, MEAF:

Mitsubishi Electric Public Relations:

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.

Criminal Charges Dropped Against Chronic Fatigue Syndrome Researcher Judy Mikovits

15 Jun

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.

This research came out of the Whitemore Peterson Institute (WPI) and former WPI research Judy Mikovits.

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

Lack of infection with XMRV or other MLV-related viruses in blood, post-mortem brains and paternal gametes of autistic individuals.

and

PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism.

CDSweep Makes it Easy to Clean Out Your Unwanted CDs & Support Autism Research!

15 Jun

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.

More details are on the ASF blog:

CDSweep Makes it Easy to Clean Out Your Unwanted CDs & Support Autism Research!

From ASF’s Facebook Page:

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