“Science”Blogs: Seed Media’s Aggressive Weed
Part II Seed Media's "Science"Blogs: A 180 Degree Shift in Reporting

Counting on Autism Society of America to Make Touchdown on Vaccine Safety Research at IACC

Touchdown

Managing Editor's Note: For information to join the conference call tomorrow, click HERE. Pre-registration is strongly recommended for the Science Workshop and registration information may be found HERE.

By Theresa Wrangham

As the Interagency Autism Coordinating Committee (IACC) prepares for their upcoming Scientific Workshops (HERE) at the end of the month to inform the updating of their Strategic Plan for Autism Spectrum Disorders Research (HERE), a series of conference calls (HERE) to prepare for the workshops are being conducted and are open to the public on a listen only basis.  

As we reported in our last newsletter, IACC Public Member and SafeMinds Director Lyn Redwood (HERE) is not the IACC representative  for the panel addressing the strategic plan question “What Caused This to Happen and Can It Be Prevented?” and instead Autism Society of America  (ASA) CEO and IACC Public Member Representative Lee Grossman and Jeff Sell were elected to the panel. 

To their credit, during last week's call when it was apparent that the subject of the environment as it pertains to vaccine safety research would not be introduced by others on the panel, Jeff Sell opened the door to discussions.  Unfortunately, its introduction occurred very late in the course of the meeting and as a result did not receive the full discussion it merits. Tomorrow's conference call is the last prior to the workshop. The monumental task to reinstate vaccine safety objectives improperly removed from the strategic plan in January will fall to ASA, specifically Lee Grossman and Jeff Sell.  SafeMinds suggests these points to Lee and Jeff to assist in making the argument:

• Congress tasked IACC with finding the causes of and treatments for autism.  Vaccines were the only cause specifically singled out in the legislative history.  The IACC is required to develop an annual strategic research plan and budget to accomplish the mission set by Congress.

• The Vaccine Injury Compensation Program (VICP) has compensated vaccine injuries leading to an ASD diagnosis, as well as the Government having conceded numerous cases of vaccine-induced ASD.  The question is thus not whether vaccines "can" cause autism.  Instead the questions that remains is how many children are affected, how can new cases be prevented and/or existing cases treated;

• Obtaining baseline data on the health of unvaccinated (and alternately vaccinated) children is the most obvious first step in filling crucial safety research gaps, however, considerable research is also required to determine the mechanism of what is most likely an immune/autoimmune reaction to vaccines.

• The IACC is aware of the results of the NVAC's review of the CDC's Immunization Safety Office (ISO) Draft Research Agenda that identified crucial gaps in safety science that have implications for the IACC's Strategic Plan as follows:

  1. Comparing health outcomes of vaccinated vs. unvaccinated (and alternatively vaccinated) children – a research objective removed in January prior to the NVAC's findings.  The objective as written in the plan - Question 3, Short-Term Objective 5: Determine the feasibility and design an epidemiological study to determine if the health outcomes, including ASD, among various populations with vaccinated, unvaccinated and alternatively vaccinated groups by 2011. Duration 2 years, budget $10 million.
  2. Animal studies similar to the research objective removed in January from the IACC's Strategic Plan - Question 3, Short-Term Objective 4: Study the effect of vaccines, vaccine components, and multiple vaccine administration through a variety of approaches, including cell and animal studies, and understand whether and how certain subpopulations in humans may be more susceptible to adverse effects of vaccines by 2011.   Duration 2 years, budget $6 million.

•  The majority of the IACC’s public members acknowledged the public's wishes expressed via RFIs received last year, and supported by the previous science workshops and strategic planning workgroup that informed the original strategic plan for the inclusion of vaccine safety research.  Previously approved vaccine safety research objectives that are now also supported by NVAC must be restored to the agenda;

• IACC has a statutory obligation to integrate other vaccine safety research objectives within the NVAC report that specify ASD as an outcome and that are not encompassed by the previously approved  objectives must be integrated into the strategic plan;

• Individuals with autism may well represent a “genetically sensitive population” indicated in the IOM 2004 report for whom adverse vaccine events must be investigated.

• The level of difficulty in performing any of the above vaccine safety research is not an acceptable reason for not attempting to conduct the research.  It is unethical to not pursue this line of inquiry, given the identification of safety gaps and recommendations to remedy them. 

• Distrust of vaccines continues to rise due to the refusal of government agencies to address these acknowledged gaps in science.  It is ethical to close the research gaps that will allow for a better understanding of the risks and benefits of vaccines as they pertain to autism and/or other possible vaccine injuries that result in undesirable health outcomes outside the scope of infectious disease.

Other opportunities for research to understand the role of the environment in autism that should be integrated into the plan are as follows: 

• Establish use by the National Institute of Environmental Health Sciences of existing data gathered by the National Center for Environmental Health and the National Health and Nutrition Examination Survey; the purpose of this would be to establish reference ranges to be used by physicians and scientists to determine unusually high toxicant exposure levels within individuals and/or groups, identify toxicity levels within the population, and determine environmental changes by tracking exposures over time;

• Conduct body burden studies on individuals with autism spectrum disorders that would investigate the toxic load of toxicants such as mercury and aluminum, their effects alone or in combination, and synergistic effects when combined with other toxins or viral or bacterial agents;

• Expand existing objectives investigating biomarkers and treatments with an added focus on the identification of comorbid disease states (immune system abnormalities, inflammatory bowel disease, oxidative stress, etc.).

SafeMinds will update the community on discussion outcomes from tomorrow in our newsletter on Thursday.  We support ASA's actions to accomplish the research outlined above that is critical in unraveling autism's causation and prevention.  For information to join the conference call tomorrow, click HERE.

Pre-registration is strongly recommended for the Science Workshop and registration information may be found HERE.


Theresa Wrangham is the mother of Rachel, a teenager who is diagnosed with PDD/NOS, and Deanna. She lives in Colorado with her husband, Scott.  She brings to the fore an experienced parent's perspective on raising a healthy child affected by ASD and the benefits of advocacy outside family needs. Theresa was appointed to the Board of SafeMinds in 2007 and currently serves as president. She served as a past Board Member with the Autism Society of Colorado and co-founded the Autism Society of Boulder County (ASBC), serving five terms as president. She is currently the immediate past president. Theresa is also the Director of Educational Development and Conference Liaison for the US Autism & Asperger Association.

Comments

Garbo

It seems that they've cooked up a convenient study to release ahead of the morbidity report that will necessarily show the new U.S. 1 in 100 number. So the news can latch on to it as "further evidence" that there have always been 1 in 100 autistic people and we're just better at counting them now. And as a bonus they're using it to stomp on Wakefield again too. How much more time is this going to buy them? Not much, once they start injecting 100mcg of mercury into all those under 9 year olds getting 4 flu shots this year. They seem completely unrepentant that their reindeer games are costing people their lives.

Kathy Blanco

Vaccine safety, wow, is there a safe vaccine? Take the merury out, is it safe then? Or how about the Aluminum? Squalene (swine flu), the Nonoyxhnol 9 (swine flu), the 2p-e? Ok, how about the duck, chicken and other parts? Horses diptheria? I know, the MSG? The Formaldehyde. NOPE. Or the DNA altering viruses which forms proteins homogolous to brain tissue? Nope...can't seem to come up with a formula yet, that can be stamped, safe for all. Sorry, it's a non science. No vaccine has ever ameliorated or stopped diseases. Immune systems do, by virtue of clean water/air/food and hygeine as well as a body that is up for the challenge. Of late, I wonder if any child will go unscathed, be it clinical to subclinical, to latent and persistent? Proteome researach shows, that these man made things are changing our DNA (see www.silentsuperbug.com ). For the worse we have opened the pandoras box, mess with mother nature, you get bit in the butt. Councils like this, should just go home and give up. Irritating the immune system is something that happens naturally, when the child can handle one virus or bacteria at a time, not three, not seven, etc. Not when they don't have a blood brain barrier or liver detox system or myelin? Not when the immune system requires timing and maturation, as well as the brain. No, we have done a fine job of messing with mother nature. Breastfeed a long long long long time, (mothers must be clean of things too), motheres need to be infection and amalgam free, and get her nutrient stores up like VIT D3, Vit B3, Folic, (iron but not the ferrous type), Selenium etc. This makes for a healthy baby free of disease the entire lifetime.

Kathy Blanco

Objective Autism Dad, we found a wonderful system for keeping things in order with DVD and Cd's, that is a unit that stores four hundred videos like a juke box. We love it, and we put it in order, because yes, we like the alphabetic thing...so, we don't have the CD's on the floor like they use to be. Just want to let you know...

Benedetta Stilwell

Pam;
The last link worked. I went back to try your first one and it still didn't. But thanks for going to the trouble to blog it again for me. I don't know why, but I got to anyway.

julie

In 15 years, 1 in 100 adults really will have autism.

People with autism can't fill out questionnaires, professor.

My biggest fear is that society will start accepting 1-2% of kids being severely disabled as "normal"-- something that "just happens". Just like skyrocketing rates of childhood obesity, diabetes, cancer, athsma,ADHD just happen. And anyone who asks why is called crazy.

ObjectiveAutismDad

I agree with Ben's Mom... I like to keep my music in alphabetic order, and I'm a bit neurotic about keeping the CDs/LPs clean... But I could answer these survey questions whereas my son would wander off and most likely not respond at all (like when his guardian ad litem informed him of his rights -- we had left the room and he got up and came looking for us completely ignoring the attorney; I'm sure he didn't have a clue what the guy was saying).

Pamela

Benedetta

I'm not sure why the link isn't working. The URL is correct. If you google "Murdoch and Glaxo" it's the second hit.

Trying it again http://www.guardian.co.uk/media/2009/feb/02/james-murdoch-in-glaxosmithcline-role

Katie Wright

Thank you Lee! Despite Story Landis' droning on and on I heard Lee and Jeff Sell (the 2 parents) unequivocably state IACC must suport the vax/ unvax project. Sadly, Craig Newschaffer, AS's rep, seemed to feel this was not necessary because dotcors were doing a better job w/ adverse reactions surveillance (???)and it would be too politcal. What planet does he live on?

It is also worth noting that IACC voted on the panel members and in every case the progessive parents (Lyn and Lee) lost. So now we get to see IACC's prixe panel members in action. It seemed as if half ofthem did not show up! One member joined the call in the last 15 minutes and said nothing! Other members had very little insight and spent all of their time speaking about logistics.

It seems to me that if scientists do not see this work as a priority and don't participate or show up than they should excuse themselves from the panel and Lee and Lyn's choices shoudl replace the no shows.

Other than Lee and Jeff Sell I did not hear one passionate voice representing the needs of our kids- suffering now.

Ben's Mom

The 1 in 100 adults might have autism rubbish is maddening!

Let's face it, as parents we often begin to see "traits" in ourselves and others and begin to become amateur diagnosticians for a period of time after our child's diagnosis. Many of us would like to claim (and possibly some rightly) that our difficulties with our spouses are because they are on the spectrum. But we know, generally there is a difference between our kids and these difficult adults. What worries me is when I see people both inside and outside of our community of parents so quick to dismiss this epidemic as genetic because they feel they can diagnose themselves or others based on personality traits.

HOWEVER, (and this is a very important distinction that most everyone , including Baron Cohen seems to overlook) without significant loss of function there is no disorder!

This a fundamental tenant of diagnosis. Lets take the example of obsessiveness; maybe you like to keep things neat and tidy, and you have a tendency to be very organized on the way you store your sox, you have some basic rituals to make sure you lock the doors at night and always count the chairs when you enter a room. Does this mean that you should be diagnosed with Obsessive Compulsive Disorder? OF COURSE NOT! But, wait, you met every criteria.

This arm chair diagnosing is insulting to our children who are truly disabled by their conditions and who need assistance. It minimizes their needs for assistance and recovery and dilutes our efforts to bring attention to the horror of their ever increasing numbers.

PS: Go Lee and Jeff!!!!

Jack R.

Well, if you follow the link in the article mtk references, you'll see that apparently Simon Baron Cohen developed a survey that can label 1 in 100 adults as ASD. Well done. I guess we're screwed. And I guess, by the way, I'm ASD because I would rather go to the library than a party and prefer reading non-fiction (like Evidence of Harm!). What a load of crap that is.

mkt

You really shouldn't ignore this -
no link between MMR and autism:

http://timesonline.typepad.com/science/2009/09/national-autistic-society-comes-off-the-fence-mmr-isnt-linked-to-autism.html

Alison Davis

Kudos to ASA's Lee Grossman and Jeff Sell to step up to the plate and fully represent the public's growing numbers of families with autism. May they continue to support the many who are relying on them now for proper action

Benedetta Stilwell

Pam
I tried your link, it did not work.

Healing autism;
I thought someone here would have heard of Jean Genet if they are any good. But I guess no one did. That might give you a clue! I wished I had something like this years ago when I was going through tons and tons of junk science and I happened up on Rimland??? He seemed on the up and up and made sense, but how was I to know for sure (dangers of being first).

Pamela

In Reference to Sunshine's Post

Of course Fox News reported on this. Fox News is

1.owned by the Murdoch's

2. who work for Glaxo (James Murdoch) the maker the UK MMR (http://www.guardian.co.uk/media/2009/feb/02/james-murdoch-in-glaxosmithcline-role)

3. and who own the Sunday Times

4. who hired Brian Deer to go after Dr. Wakefield.

Sunshine

The latest reported tonight on Fox, from the UK, says that MMR does not cause Autism. When are we going to have a break through? I hope the US steps up to the plate. Its so wearing to have these "studies" that dispute the connection.

Autism Grandma

Regarding: "Conduct body burden studies on individuals with autism spectrum disorders that would investigate the toxic load of toxicants such as mercury and aluminum, their effects alone or in combination, and synergistic effects when combined with other toxins or viral or bacterial agents;"

What if ALL children were tested for heavy metals? Simple urine porphyrin testing is available in U.S. from LabCorp. ALL of the vaccinated children would show some level of damages due to aluminum and mercury exposures, while few to none of the non vaccinated would demonstrate this.

Hmmmm...Wonder if this would be enough to convince anyone...probably not...they would concoct some story like "the kids all got this from eating Cheerios"...Big Pharma creates the propaganda, the media reports it and the parents believe it.

Do I sound "cynical"? If this official government refusal to conduct vaccinated versus non-vaccinated studies goes on much longer, I am going to rob a bank to pay for these studies myself. [Just making a point here so don't turn me into the FBI please]

Theresa Wrangham

no, I haven't heard about Jean Genet. There are many treatments out there that need to be researched for efficacy and one of our goals at SafeMinds is to look at the many treatments in use to discover why they work for some of our children and not for others. The research we are suggesting would assist in that goal and help direct families to treatments that best suit their child's needs.

Thanks for your comment!

healing autism

Have you heard about Jean Genet? I am looking into this Byonetics program of his which seems to have been incredibly successful with many autistic children. My nephew is autistic I am trying to help my brother find solid solutions.

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