Archive | June, 2012

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?

Your Baby’s Best Shot: Why Vaccines Are Safe and Save Lives

12 Jun

There are a lot of vaccine books out there. Some bad. Some really bad. Some good. Some very, very long. One that I like that I’ve got on my desk at work is “Vaccine and Your Child. Separating Fact from Fiction” by Paul Offit and Charlotte Moser. It’s a good book for the new parent. Short sections take on the facts about vaccines in general and each specific vaccine.

A new book is in the works, to be published in August. Your Baby’s Best Shot: Why Vaccines Are Safe and Save Lives. This looks like a good one to recommend to the new parent.

Here’s the blurb:

Parents can easily be bombarded by conflicting messages about vaccines a dozen times each week. One side argues that vaccines are a necessary public health measure that protects children against dangerous and potentially deadly diseases. The other side vociferously maintains that vaccines are nothing more than a sop to pharmaceutical companies, and that the diseases they allegedly help prevent are nothing more than minor annoyances. An ordinary parent may have no idea where to turn to find accurate information.

Your Baby’s Best Shot is written for the parent who does not have a background in science, research, or medicine, and who is confused and overwhelmed by the massive amount of information regarding the issue of child vaccines. New parents are worried about the decisions that they are making regarding their children’s health, and this work helps them wade through the information they receive in order to help them understand that vaccinating their child is actually one of the simplest and smartest decisions that they can make.

Covering such topics as vaccine ingredients, how vaccines work, what can happen when populations don’t vaccinate their children, and the controversies surrounding supposed links to autism, allergies, and asthma, the authors provide an overview of the field in an easy to understand guide for parents.

In an age when autism diagnoses remain on the rise, when a single infectious individual can help spark an epidemic in three countries, when doctors routinely administer an often bewildering array of shots, and when parents swear their babies were fine until their first dosage of the MMR, the authors hope this book will serve as a crucial resource to help parents understand this vitally important issue.

You can read more on their facebook page.

Freezer failure at brain bank hampers autism research

11 Jun

Tissue samples, especially brain tissue samples, are critical to autism research. However, there are very few brains available for post-mortem research. One bank of such tissues is at McLean Hospital in Boston. The tissue bank is affiliated with Harvard University. Tissue banks take great care to preserve their collections, as you might imagine. However a freezer failure at McClean has damaged one third of the specimens there. The Boston Globe discusses this in Freezer failure at brain bank hampers autism research.

From the Boston Globe:

An official at the renowned brain bank in Belmont discovered that the freezer had shut down in late May, without triggering two alarms. Inside, they found 150 thawed brains that had turned dark from decay; about a third of them were part of a collection of autism brains

This is a huge loss to the research community.

One can read more about one tissue bank here in the article NICHD Brain and Tissue Bank. No one wants to think about making the decision to donate one’s tissues, or those of a loved one. But it is something well worth planning ahead.

With a hat-tip to the reader who forwarded me the link on the story, and to Boston Globe photographer Essdras M Suarez whose photo is above.

UA research looks at detecting autism in rural areas

11 Jun

Most online discussion of autism prevalence focuses in a single number: the average. For example, the recent CDC estimate boils down to “1 in 88” most of the time.

There is a lot going on behind the average, though. For example there is a great deal of variation in prevalence state to state, between racial/ethnic groups and between rural and urban populations. These differences in prevalence point to the conclusion that we still are not identifying all autistic students (much less all autistic adults).

This is why there are a number of efforts to identify and bring services to under represented populations.

Alabama is one of the states that is included in the CDC prevalence estimates. Alabama is the state with the lowest prevalence estimate.

Which is why it is a good thing that the University of Alabama is working on identifying autistics in rural Alabama. This is discussed in UA research looks at detecting autism in rural areas

Here is an excerpt:

Current knowledge about autism spectrum disorders (ASD) allows doctors to identify patients with autism as early as 18 to 24 months old, but in places like rural West Alabama those diagnoses might not take place until children are 5 or 6.

Dr. Dan Albertson and his colleagues at the University of Alabama are in the midst of a study that they hope will shorten the amount of time it takes to recognize cases of autism at the rural Carrollton Primary Care Clinic in Pickens County.

In the study, children who show signs of autism at the Carrollton clinic will be asked to participate in a follow-up play session that is videotaped.

The videos are then sent to the Autism Spectrum Disorder Clinic in Tuscaloosa for further analysis, and doctors at the Carrollton clinic are then given feedback on any red flags for the disorder.

This study will help address the big question of how to efficiently screen a lot more kids for autism than we currently do.

The state with the highest autism prevalence estimate in the recent CDC report was New Jersey. Recently results were reported from a program to use staff in schools, specifically preschools, to help screen for autism in New Jersey. That study was headed by Dr. Yvette Janvier, former member of the Interagency Autism Coordinating Committee.

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