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

The Curious Case of Autism and MMS

14 Jun

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: Autism Moms “Fall in the the victim role…and they are loving it”

14 Jun

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.

Save the Date: July 10, 2012 – Meeting of the IACC

13 Jun

The first meeting of the Interagency Autism Coordinating Committee (IACC) will meet on July 10, 2012. Roughly one month from today. An announcement from the Office of Autism Research Coordination (OARC) is below.

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.”

· On May 24, 2012, NIH, CDC and HRSA issued a news update about a newly published report based on data from the Survey of Pathways to Diagnosis and Services: http://www.nimh.nih.gov/science-news/2012/most-children-with-asd-diagnosed-after-age-5-use-multiple-services-and-medications.shtml.

· 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.

MMS supporters fight back…by the dozens…

12 Jun

Emily Willingham and Jennifer Byde-Myers created a Change.org petition No bleach enemas to “cure” autism in children! Right now there are over 1,700 signatures to that petition. If you haven’t signed yet, consider doing so now.

The “inventor” (Jim Humble) of MMS (Miracle Mineral Solution) started his own petition to defend the practice: Emily Willingham: Stop telling people that MMS is bleach because it is not.

The petition is short…and incorrect:

Stop telling people that MMS is bleach because it is not

Because there are some mothers that don’t realize that Emily is wrong and they may never help their child to attain normalcy.

Which so far has 46 of the hoped-for 1,000,000 signatures he was seeking. Mr. Humble, of course, is one of the 46.

As is “credulous nimrod”

Just because this is exactly the same chemical as bleach doesn’t mean Emily should call it bleach! This is because of reasons. And quantum mechanics. And I trust that Jim Humble would never lie to desperate parents just because he’s selling this product for a profit! Enough of the medical establishment and their “science” and their “first, do no harm.” We want pointless feel-good actions that take advantage of our sadness and our scientific illiteracy!

and “Igor K”

Stop the fearmongering. Just because sodium chlorite bleaches through oxidation and is grouped with other chlorine bleaches that operate in a similar fashion (i.e. chlorine dioxide, chlorine, and calcium hypochlorite does not make it a bleach. That tits industrial manufacturer’s label it as such also means nothing. I regularly drink inappropriately named acidic drain cleaners to relieve constipation. That the public health agencies all over the world recognize MMS’ risks as poisoning, renal failure, reduction of the ability of the blood to carry oxygen, abdominal pain, nausea, vomiting, and diarrhea doesn’t mean they know what they are talking about. To prove it, I volunteer myself along with everyone to sign this petition for a public demonstration where each person will consume a gallon of undiluted sodium chlorite without any deleterious health effects. Then, they will have to accept it as evidence of our correctness.

And this even with people promoting the petition. It seems safe to say that MMS does not have a broad base of support.

I can not recall anything which has been touted as a method to “recover” children from autism has ever been publicly rejected by groups promoting so-called “biomedical” approaches. But here’s a chance to step up to the plate.

The Autism Research Landscape: The IACC, Research Funding and Data Sharing

12 Jun

Susan Daniels, Ph.D., is Acting Director, Office of Autism Research Coordination at the U.S. National Institute of Mental Health, NIH. She spoke at IMFAR 2012 on The Autism Research Landscape: The IACC, Research Funding and Data Sharing (click for the power point slides).

Below are a few points that caught my eye. (the entire presentation caught my eye, but here are a few I will highlight!)

As this will be the first meeting under the reauthorized Combating Autism Act (or CARA), the membership has changed. The federal members are

Thomas Insel (NIMH, NIH)
James Battey (NIDCD, NIH)
Linda Birnbaum (NIEHS, NIH)
Coleen Boyle (CDC)
Francis Collins (NIH)
Denise Dougherty (AHRQ)
Tiffany Farchione (FDA)
Alan Guttmacher (NICHD, NIH)
Laura Kavanagh (HRSA)
Donna Kimbark (DoD)
Walter Koroshetz (NINDS, NIH)
John O’Brien (CMS)
Alexa Posny (Dept of Ed)
Sharon Lewis (Administration for Community Living)

Members in bold are new.

Public members are:

Idil Abdull (Parent, Somali American Autism Foundation)
James Ball (JB Autism Consulting)
Anshu Batra (Parent & Developmental Pediatrician)
Noah Britton (Self advocate)
Sally Burton-Hoyle (Family member, Eastern Michigan University)
Matthew Carey (Parent)
Dennis Choi (Simons Foundation)
Jose Cordero (University of Puerto Rico)
Jan Crandy (Parent, Nevada State Autism Assistance Program)
Geraldine Dawson (Autism Speaks)
David Mandell (University of Pennsylvania)
Lyn Redwood (Parent, Coalition for SafeMinds)
Scott Michael Robertson (Self advocate, Autistic Self Advocacy Network)
John Elder Robison (Self advocate & Author)
Alison Tepper Singer (Parent, Autism Science Foundation)

Note that I am in the list above. Further note that I do not represent the IACC here or elsewhere.

The responsibilities of the IACC are:
1) Advise HHS’ Secretary Sebelius

2)Establish autism research priorities
IACC Strategic Plan for ASD Research

3) Monitor Federal activities and analyze research trends
IACC ASD Research Portfolio Analysis

4) Communicate advances in the field
IACC Summary of Advances in ASD Research

Autism research is over $400 million per year in the U.S.. Of that 82% is funded by the federal government. Autism research funding has nearly tripled over the past decade, but appears to be reaching a plateau for the next few years.

There is an effort to promote data sharing among research teams. For autism there is the National Database for Autism Research (NDAR) Tom Insel, director of the U.S. National Institute of Mental Health (NIMH) and chair of the IACC has also recently written an article: Time Matters – Why We Care So Much About Data Sharing

A brave parent speaks: How I Made a Mistake and Was Given The Opportunity to Say I’m Sorry

12 Jun

Over at Emma’s Hope Book a mother has done something very brave: made a public apology for a mistake.

How I Made a Mistake and Was Given The Opportunity to Say I’m Sorry

She starts by quoting her daughter:

“You put the toast in the basement. That made me sad.” Emma stared at me expectantly.

I drew in a breath. My chest felt tight. I knew exactly what she was referring to. We’ve had similar conversations, but she’s never said it so directly.

The article is sad but wonderful. I can’t pull excerpts without destroying the beauty of the story, so I urge you to follow the link and read the rest.

A brave Biomed group

12 Jun

The website nnyautismcenter.com has the following warning posted:

Alert Issued On Danger Supplement

Miracle Mineral Supplement and Miracle Mineral Solution marketed online as health supplements which have beneficial effects against a wide range of illnesses, is similar to industrial-strength bleach! This chemical is 28% sodium chlorite – which becomes bleach when mixed with citric acid. Taken as instructed severe vomiting and diarrhea may result while incorrect mixing of this product could lead to respiratory failure with damage to the gut and red blood cells.

Consumers are urged to dispose of the supplement as soon as possible. It is further recommended that if anyone finds either of these supplements on sale anywhere to promptly report it to local authorities.

Why is this brave? Because nnyautismcenter has an epidemic and Biomed focus. They don’t seem to be into mercury and vaccines, but they are into diets and immune system testing.

But if they can see that MMS is dangerous and warn their customers, why are other autism groups promoting MMS?

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