January 31, 2008

Thank You ABC


I just got finished watching Eli Stone, and I can't believe that a show got it so right. I mean not perfect, but damn close.

Even the internal attempted cover up of evidence.

ABC didn't even cave and put in the 'no proven link' BS disclaimer afterward.

Wow. I'm kinda stunned.

And a little speechless. Which is saying a lot for me.

Thank you Greg Berlanti
Thank you Mark Guggenheim
Thank you Ken Olin
Thank you Andrew Ackerman
Thank you Johnny Lee Miller
Thank you Touchstone

And thank you to Laura Benanti for playing a real autism mom.

I mean, she was a real autism mom. Except that her hair and make up was done, of course. She had done all the research, she knew her stuff better than the professionals around her, she was not afraid to speak up, she was more concerned with the safety of rest of the kids that would come behind her son than she was of making money for her own son, and she pushed the people around her to do the right thing no matter what it cost them.

She was not afraid to fight a loosing battle with everything she had, and do it for all the right reasons.

Thank you to everyone involved in this production for telling our story in about as good a way as you could have told in 44 minutes.

I am not used to major networks owned by multinational corporations propped up by bajillions in pharma advertising dollars telling this story so close to right on the nose.

I am not sure what to do with myself.

Must. Lie. Down. Rethink. World. View.

Update: Thanks Hulu

January 28, 2008

The AAP v. Eli Stone

For those of you who have not heard, the pilot for Eli Stone, which will air on ABC this Thursday night, has a plot line in which Mr. Stone represents a family who sues a pharmaceutical company on the grounds that their mercury containing vaccine caused their sons autism.

And they win.

As you might imagine, the Powers That Be are none to happy, and the American Academy of Pediatrics has sent a letter to ABC asking them to pull the pilot.

I am sure that ABC is gonna get right on that.

As I mentioned in my piece on why you should support the writers strike, lots of writers have autistic children, and are on the spectrum themselves. So these parents will be inspired to write about what they know. And they know that their kids were healthy before vaccination, and very sick afterward. And the people around them know that these parents are reasonable people making a reasonable claim.

That toxins injected into the blood streams of babies are toxic to babies.

I have no idea if Greg Berlanti or Marc Guggenheim who wrote the Eli Stone pilot have autistic children in their lives, but I am curious to know from whence their inspiration came. (UPDATE: I called Mr. Berlanti's office, and his very nice assistant said that their inspiration came from the reading the headlines. To Messers Berlanti and Guggenheim, thank you for listening.)

Why are AAP, CDC, NIH, et. al. surprised when people in prominent positions who are not satisfied with their flimsy responses to the public's legitimate concerns use what bully pulpit they may have to bring the subject to the forefront of society?

If AAP wants people to keep vaccinating their children with out question and with out any kind of screening to see what children are at risk for neurological and autoimmune damage, then the burden of proof is on them to prove that vaccines are safe for every child.

If they could have proven that, they would have done that by now. They can't. That is why the Vaccine Injury Compensation Fund exists in the first place.

The FACT is that vaccines cause damage, and even death, in some children.

Dear AAP,

People are not going to stop talking about vaccine damaged children. The longer your turn your head and ignore the problem, the louder the questioning and the protesting will get.

If you want confidence in the vaccine program, deal honestly and earnestly with the very real problem of our damaged children and look at the children that are recovering from autism and start treating your autistic patients for their medical problems.

Figure out how to screen for vulnerability to vaccine damage BEFORE you give a child a shot, not two years after it is given, and stop vaccinating children who can't tolerate vaccines.

My son is not an acceptable loss in your war against TREATABLE viruses.

Stop telling people to shut up about it. They 'aint gonna.

Ginger Taylor

So while I have encouraged people to support the strike, go ahead and fire up your Tivo for Eli Stone. It apparently combines three of my passions, Faith, service to Autism Families and TV.

David Kirby has a great HuffPo piece on what the AAP should be more worried about.

Pediatricians, ABC and Censorship: Facts Are Scarier Than Fiction

On Monday, the American Academy of Pediatrics will release the contents of a foreboding letter sent last week to ABC/Disney executives, demanding they cancel the January 31 premiere of a new legal drama series, Eli Stone, because it features a family attorney who successfully argues in court that mercury-containing flu vaccine caused autism in one child.

The letter, signed by AAP President Renee Jenkins, borders on near-hysteria over a fictional television entertainment. It ominously warns that ABC "will bear responsibility for the needless suffering and potential deaths of children from parents' decisions not to immunize based on the content of the episode."

Dr. Jenkins calls on ABC to cancel the episode but, anticipating a refusal, urges executives to run a disclaimer that "no scientific link exists between vaccines and autism," if the offending network "persists" in airing the show.

I share the AAP's concern that parents should not be driven away from protecting their children from dangerous, even deadly diseases. But parents are far too smart to base such an important decision as immunization on the "content of the episode" of a single drama on broadcast television.

In fact, if I were Dr. Jenkins, I would be far more concerned about real news happening in the real world -- events that not only suggest the possibility of some sort of link between mercury, vaccines and autism, but might alarm parents more than any fictional account written for ratings-grabbing mass entertainment.

If I were Dr. Jenkins, instead of fretting over a fake family engaged in a mock trial held in a make-believe court on some LA soundstage, I would be up at night wondering why the Federal Government recently conceded a real vaccine-autism lawsuit in a real court and will soon pay a real (taxpayer-funded) settlement to a real American family and a very real child with autism.

I would want to know why the Department of Justice agreed that mercury-containing vaccines "severely aggravated" the autism symptoms in at least one child, and I would wonder if research into what triggered that severe aggravation might provide at least some clues into the perpetual mysteries of the disorder and its causes.

And, if I were Dr. Jenkins, rather than wringing my hands and trying to censor a TV-show verdict, I would truly worry about what will happen when parents realize that the Federal Government's concession has been sealed -- preventing the public (and future plaintiffs) from viewing what could only be described as "evidence of harm." I would be nervous that this secretive action in an actual court (itself reminiscent of science fiction) might drive parents away from vaccination far more effectively than any scripted drama.

Furthermore, if I were the top pediatrician in America, I would not be asking television networks to make sweeping statements such as, "No scientific link exists" between autism and mercury or vaccines, when highly respected publications continue to publish new (and very real) data that roundly debunk what has now become, frankly, a tired piece of misinformation.

If I were the AAP, or ABC for that matter, I would feel downright silly stating that "no scientific link exists," so soon after the Journal of Child Neurology published a study titled, "Blood Levels of Mercury Are Related to Diagnosis of Autism: A Reanalysis of an Important Data Set." I would also worry about parental reaction to learning that researchers had done due diligence and reanalyzed data from a prior, hugely influential study that (erroneously) found zero connection between mercury levels and autism.

Instead of trying to silence the fictional words of "Eli Stone" co-creators Greg Berlanti and Marc Guggenheim, I would pay closer attention to the real words of Journal authors M. Catherine DeSoto and Robert Hitlan, who found a major flaw in the original study that found no link. In fact, they concluded, "a significant relation does exist between the blood levels of mercury and diagnosis of an autism spectrum disorder," and that "hair sample analysis results offer some support for the idea that persons with autism may be less efficient... at eliminating mercury from the blood," something that proponents of the mercury-autism hypothesis have long contended.

And, I would heed this rather wise warning from the authors: "If there is any link between autism and mercury, it is absolutely crucial that the first reports of the question are not falsely stating that no link occurs."

Another study, freshly out of Harvard, likewise shows a potential link between mercury and the autopsied brains of young people with autism. The American Journal of Biochemistry and Biotechnology reports that a marker for oxidative stress was 68.9% higher in autistic brain issue than controls (a statistically significant result), while mercury levels were 68.2% higher.

And though the mercury results did not quite reach statistical significance (probably due to the small number of autistic brains studied: 9), the authors cautioned that, "However, there was a positive correlation between (oxidative stress and mercury levels)," meaning the two might be associated.

Finally, if part of my AAP job description was to ensure that every American child is vaccinated as early and often as possible, I would be hugely apprehensive, not about a new courtroom drama, but rather about a dramatic new study soon to appear in the Journal of Allergy and Clinical Immunology.

In the article, "Delay in DPT vaccination is associated with a reduced risk of childhood asthma," Anita Kozyrskyj, an asthma researcher at the University of Manitoba, and other scientists combed the medical records of 14,000 children born in Manitoba in 1995 (when many Canadian shots still contained mercury, by the way).

They found that children who received the DPT (diphtheria, pertussis and tetanus) vaccine at two months of age were 2.63 times more likely to develop asthma (at a rate of 13.9%) than children who were not given the shot until after four months of age (5.9%). "We're thinking that maybe if you delay this allergic response until a bit later, the child's immune system is more developed and maybe you're not seeing this effect," Kozyrskyj told the Winnipeg Free Press, which just broke the story.

No one wants infant children to go unprotected from whooping cough (or pertussis, the "P" in DPT). But what if delaying that vaccine could have prevented more than half of the asthma cases in the United States? With millions of children currently suffering from the disease, at the cost of billions of dollars a year, would waiting another two months improve the risk-benefit ratio for society (save for the companies that market those asthma medications)?

Even more importantly, if too-early vaccination causes asthma in some kids, could the practice cause other disorders? There is absolutely nothing to link this vaccine study to autism, of course. But consider the following:

1) Many asthma cases have been linked to autoimmunity. The same with autism.

2) Childhood asthma has been dramatically increasing for two decades. The same with autism.

3) Most of the children with asthma in the vaccine study were boys. The same with autism.

Any way you look at it, this study is hardly reassuring news to parents who are about to vaccinate their kids (though think how comforting it would be to allow them to delay this shot by two months). Medicine and the media constantly tell us that all vaccines are safe for all children. When parents try to jive that information with studies that imply the opposite, their faith and trust in public health and the immunization program begin to take a nosedive, along with vaccination rates.

It's not just the broadcast of fiction out of ABC that might drive parents away from immunization. It is the negation of fact out of the AAP as well. And if unvaccinated children get sick, will the esteemed Academy also "bear responsibility," or just heap it all upon the network?

ABC executives could cave in and cancel the broadcast, but I don't think they will. And even if America's pediatricians manage to successfully censor fiction and crush artistic freedom, they will never be able to stifle the facts.

January 16, 2008

It Just Keeps Getting More Absurd

So apparently the woman hired by NIMH to coordinate the attack on the autism epidemic, may not believe that there is an autism epidemic.

The new head of the Interagency Autism Coordinating Committee(IACC)is Joyce Chung, who is the wife of Roy Grinker, who wrote a book and tours the nation, claiming there is no autism epidemic.

I feel like I am taking crazy pills.

So are the bajillions of dollars in CAA money now going to research that proves Grinker's head in the sand theory is true, rather than actually looking for the causes and cures of autism?

A year or so before I became a mom, me and 4 of my friends started a prayer group/bible study type thing. Two of the five of us now have autistic sons. Another has a daughter with severe autoimmune disorder.

When I was in Jr. High my best friends were identical twins that lived next door, two of the three of us have autistic sons. The third has a son with a severe autoimmune disorder.

I am wondering what the stats would be for my groups of girlfriends gone by if I tried to get back in touch with all of them.

But Autism Speaks and now NIMH are propping up proponents of the idea that there is no epidemic.

All I can think of is sarcastic comments to make, so I will just stop here and let Wade, the voice of reason, and JB, the voice of pissed off parents everywhere, take over.

January 3, 2008

NIMH Wants to Know What Direction Autism Research Should Go

... or at least they say they do.

I encourage you to write to them tomorrow and let them know what you would like looked at. Take a moment right now to put your thoughts down to be sure you get it in by the Jan 4th deadline.

From NAA:

Respond to NIMH's Request for Information about Autism Research Priorities

Due Tomorrow, January 4, 2008

Request for Information (RFI): Research Priorities for the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders (ASD)

The purpose of this time-sensitive RFI is to seek input from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, state and local programs for ASD, and the public at large about what they consider to be high-priority research questions.

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research. The IACC includes both Federal and public members who are active in the area of ASD research funding, services, or advocacy. In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input. This RFI is a first step in receiving broad input at the beginning stages of plan development.

To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:

Treatment - includes ASD treatment, intervention, and services research that aim to reduce symptoms, promote development, and improve outcomes. This area includes the development and evaluation of medical, behavioral, educational, and complementary interventions for ASD. In addition, this area includes research studies that evaluate the effectiveness of treatments in real world settings, disparities in ASD treatment among specific subpopulations, practice patterns in ASD programs and services, and their cost-effectiveness.

Diagnosis - is concerned with the accurate and valid description of ASD (phenotype) both at the individual and the population level. The public health impact of ASD can be better understood by such studies. In addition, this area concerns itself with the diversity of what constitutes ASD and the characteristics of the condition over the lifespan.

Risk Factors - has to do with investigations of the factors that contribute to the risk of having an ASD in a given person or population. This includes genetic studies of clusters or sporadic occurrences of ASD, studies that focus on environmental factors, e.g., intrauterine events or exposure to toxins, which could lead to ASD, and the interaction between these factors that concentrate risk for ASD.

Biology -studies the underlying biological processes that lead to developmental and medical problems associated with ASD. This includes research in the area of neurosciences but does not confine itself to neurosciences. Therefore, research on other organ systems, interactions between organ systems, and/or other disease processes are included in this area.

The development of the strategic plan is expected to take approximately six months and will include several additional opportunities for public input.

Information Requested
We are interested in receiving your input and ideas about what are high-priority questions and issues for advancing research on ASD. We ask for your constructive and specific suggestions in the following areas (please refer to the above descriptions for each area).

What topics or issues need to be addressed to advance research on the:

1. Treatment of ASD?
2. Diagnosis of ASD?
3. Risk factors for ASD?
4. Biology of ASD?
5. Other areas of ASD research?

Please send responses to iacc@mail.nih.gov no later than January 4, 2008.

Please limit your response to two pages and mark it with this RFI identifier NOT-MH-08-103 in the subject line. The responses received through this RFI will be collated, summarized, and provided to scientific workshop participants in January 2008. Summarized results will also be made available to the public. Any proprietary information should be so marked. Respondents will receive an email confirmation acknowledging receipt of their response, but will not receive individualized feedback.

------------- end of NIMH message -------------

The following are suggested topics to cover:

* Highest priority should be on preventing new cases and treating individuals already affected.
* Congress made clear in the Combating Autism Act legislative history that NIH MUST investigate vaccines including preservatives as possible causes.
* A vaccinated vs. unvaccinated population study must be conducted.
* In order to better understand the mechanisms of autism onset, and consistent with new emphasis on early detection and treatment, a specific program should be undertaken, probably inpatient, to study newly diagnosed (suspected) cases of ASD to examine in vivo the specific processes and developmental mechanisms involved during onset.
* Documentation and publication of "recovered" cases.
* Evidence-based validation or rejection of treatments (behavioral and biomedical) currently being used to treat existing cases.

Process issues at NIH regarding autism research

* All workshops and workgroup meetings must be open to interested parties.
* Transparency and frequent opportunities for public input and feedback.
* The urgency of the epidemic demands all deliberate speed.
* Workgroup Chairmen must not have financial conflicts.
* Workgroups and workshops must have balance reflecting the diversity of views on cause and treatments for ASD, and not be biased toward past paradigms.
* The point of the Congressional mandate in the Combating Autism Act was to reprioritize and redirect research funding, not to simply repeat past funding hoping for a different outcome.

January 1, 2008

A New Blog For A New year

Happy New Year Friends!

As you may have noticed as of late, more and more of my Autism Blogging is also God Blogging. Because I have much more to say on the God side than is autism specific, I have launched a new blog called Daily Discernment.

It will be much of the same me that you know from here, writing much the same way I do here, except instead of taking a hard look at the American Medicine in its relationship to autism, I will be looking at the American Church and its relationship to the actual truth and direction of God.

The visible church is falling down on the job much the same way main stream medicine is.

Neither are operating according to their own mandates, and neither are proving to be very teachable.

So, like autism, it is time to go back to the beginning, take a look at what is actually going on in the church and measure it against The Truth.

If you have enjoyed my God Blogging here, please visit me at DailyDiscernment.com