Guess what? The Amish vaccinate!

And they have autism.

In the spring of 2005, UPI reporter Dan Olmsted wrote that autism is rare among the Amish of Lancaster County, Pennsylvania. “Where are the autistic Amish?” he wrote. “I have come here to find them, but so far my mission has failed, and the very few I have identified raise some very interesting questions about some widely held views on autism.”

Olmsted’s anecdotal evidence is cited ad nauseum as evidence that thimerosal causes autism. The case rests on twin assumptions: that the Amish don’t vaccinate, and that they don’t have autism. But Olmsted never visited the cryptically-named Clinic for Special Children in Strasburg, where doctors treat of children who exhibit autistic behavior. It’s not even necessary to visit the clinic. A simple phone call to a staff physician, such as the one I made recently, is enough to debunk “the Amish anomaly”, as Olmsted calls it.

“The idea that the Amish do not vaccinate their children is untrue,” says Dr. Kevin Strauss, MD, a pediatrician at the CSC. “We run a weekly vaccination clinic and it’s very busy.” He says Amish vaccinations rates are lower than the general population’s, but younger Amish are more likely to be vaccinated than older generations.

Strauss also sees plenty of Amish children showing symptoms of autism. “Autism isn’t a diagnosis - it’s a description of behavior. We see autistic behaviors along with seizure disorders or mental retardation or a genetic disorder, where the autism is part of a more complicated clinical spectrum.” Fragile X syndrome and Retts is also common among the clinic’s patients.

Strauss, along with Dr. D. Holmes Morton, MD, authored a study published in the New England Journal of Medicine which described a mysterious seizure disorder that resulted in mental retardation and autistic behavior in nine Amish children. The study was publish one year after Olmsted’s mythic voyage, so it would seem a story correction would be in order.

In an email exchange with AutismNewsBeat, Olmsted said he made several attempts to contact Dr. Morton, but Olmsted would not say if those attempts were made before or after his Age of Autism stories ran. Strauss said Olmsted never visited the clinic, and added “I don’t think he spent much time in Lancaster County.

Strauss said the clinic treats “syndromic autism”, where autism as part of a more complicated clinical spectrum that can include mental retardation, chromosomal abnormalities, unusual facial features, and short stature, as well as Fragile X syndrome. “We see quite a few Amish children with Fragile X,” he said.

Strauss says he doesn’t see “idiopathic autism” at the clinic, which he defines as children with average or above average IQs who display autistic behavior. “My personal experience is we don’t see a lot of Amish children with idiopathic autism. It doesn’t mean they don’t exist, only that we aren’t seeing them at the clinic.”

He says a child in the general population is more likely to have autism detected early and to receive a diagnosis than an Amish child. “Amish child may not be referred to an MD or psychologist because the child is managed in the community, where they have special teachers,” he says. “We know autism when we see it, but we don’t go actively into the Amish community and screen for ASD.”

Strauss adds that the Amish have a high prevalence of genetic risk factors and are protected from others. The low rate of idiopathic autism “might have more to do what genetic structure of population than lifestyle, environment or diet.”

So what’s up with Olmsted? Did a UPI reporter fabricate a story, then pass it off as true? Science blogger Prometheus offers three possible explanations:

Mr. Olmsted didn’t look all that carefully for autistic children, having already concluded that there wouldn’t be any.

Mr. Olmsted found autistic children, but didn’t count them - either because he either didn’t feel that they had real autism or because it conflicted with his forgone conclusion.

The Amish families - being somewhat suspicious of “outsiders” (not without good reason) - didn’t confide the details of their family medical issues with Mr. Olmsted.

I’m still waiting for Mr. Olmsted’s side of the story.

Sunday Feb 24th

Our Hour Special will air Feb 24th at 11AM. We will post the entire show with some online extras on our website-www.komu.com

Comment-Scientific Criticisms-KOMU

http://www.safeminds.org/pressroom/pres_releases/Review_Miles_Takahashi_6-20-07.pdf

For those who are students of science, it would seem there are some fair assessments and issues brought to light in the piece above. As relates to the KOMU coverage of this, I would have to think Dr. Miles might want to comment on these criticisms in the February wrap up.

For policy makers in state government in Missouri, this little project has done a great service to our democracy by presenting both sides of a debate. I encourage all to read through all of the many posts, understand we are human and this is of incredible importance to many not just as a medical debate but as relates to the potential for biological imperialism as imposed by state and federal government. Titer documentation not vaccination records should determine public school entrance and exemptions need to be protected. I will vaccinate my fourth child in a quite different manner than the "guidelines" given by the CDC, knowing all that I understand currently and was complete unaware of before having been engaged in this area by the experience of my family.

Evidence based medicine requires evidence of need for boosters after first dose of a vaccine in a series; it is the keep-it-simple-stupid approach that should be openly and honestly discussed between family practice and pediatrics physicians and their patients. Those who open their doors in practice to this idea may see many new patients, parents like me who want to vaccinate their children for the appropriate at-risk epidemic diseases at appropriate ages with the safest of approaches; this would shift revenue to clinical pathologists from vaccine companies selling unneeded boosters and to open-minded clinicians in the care of children. This compromise puts the patient-physician relationship back in the spotlight. The approach also dims the governance-governed relationship of the CDC and public health officials trying to do their best on a societal basis while ignoring the needs of individuals. These policy artists are so willing to overdose vaccines on the assumption that it is the best method to protect a populace that can't make decisions on its own; very unAmerican and unscientific as the idea has never ben approached any other way. A titer check approach to indicate booster need would actually help defuse a growing vaccine availability crisis, ironic isn't it?

For those who ask why a former Husker and Dakotan has so much to say on this blog, it is simple: our water is your water, I live on the banks of the great river that bears the name of your state and what we do up here on these molecules of H2O gets to Missouri eventually.

Protecting our children's environment is getting harder everyday and it is something that requires great effort from the "little" guy. Autism has a major environmental component that is a liability for the many large industries that are polluting our children's bodies; thus, though vaccines are not completely to blame they do reflect the effects of an industry who job it is to protect the environmental health of our children.

Physicians pushing pharmaceuticals to be better than the fossil fuels industry, metals manufacturers and other industrial polluters shouldn't be so hard, but as anyone can see from experience on this blog, the conditioning of MDs leads them to keep their mouths shut on politically contentious issues for fear of many backlashes.

If PHaRMA wants to push back on this issue, maybe they should spend some money on researching the environmental connections here in a productive manner for their industry by supporting the epidemiology of autism near industrial pollution sites instead of just trying to white wash their own role in this , or give Dr. Von Saal of the University of Missouri some grants to research the explosion of reproductive toxins in our food supply. The role of other industries in this internal-environmental crisis affecting the neurological health of the next generation of Americans is probably even worse than the role played by vaccines, but mom's keep blaming vaccines completely when by temporal association there is an event of vaccination and a response of neurological decline that then gets institutionally ignored.

The future will show we are on the course of a growing epigenetic epidemic, our genes and our environments are suffering increasing dysfunction. These kids are Rachel Carson's birds of the 21st century they need better than what society is doing to skirt the issues so as to protect establishment medicine (state of denial), pharmaceuticals (vaccines), big oil (polycyclic aromatic hydrocarbons), manufacturing (heavy metals), agriculture (organophosphates), food processors (bisphenol A, aspartame), and others (including radiologists) who are playing this role in punctuated genomic instability complicated by molecular slowing of toxin handling kinetics in an increasing proportion of an entire generation of children. Sadly, all of this is only going to get much worse (slowly) for a very long time (decades); the chicken little of today will be understood as the sentinel of tomorrow-by then I fear we will not really have the American experiment anymore, being too run down as a middle class populace by these social-environmental issues to fight the good fight anymore.

As for approach to treatment, establishment academic clinicians need to start paying attention to the work and ideas of Martha Herbert, MD, PhD at Harvard, she's doing the right homework on this issue where so many others are afraid to in the ivory towers. People who want the vision to see how to make this debate productive for children need to read Changing the Course of Autism by Bryan Jepson, MD.

Thanks again to the faculty of the University of Missouri School of Journalism, you are profiles in courage for our day.

Edward F. Fogarty, III, M.D.

Chairman of Radiology

University of North Dakota School of Medicine

Lifelong resident of the banks of the Missouri.

Out of Town

Leaving town...be back late tomorrow night... I am still behind on many emails. I hope to catch up next week. If you comment on the blog, it won't show up until later this weekend.

Thank You!

Now that the series is behind us...We are making plans to shut down the blog in a few weeks. I will have a set date by Friday. I will post the shut down day on the blog.

We are going to keep the blog online, but make it inactive.

We are in the process of planning an hour long show in February. The show will feature a round table discussion and behind the scenes clips.

We will put the entire show online.
We look forward to your comments.
Thank you for participating in this blog.
We enjoyed sharing the process of the series with you and hope you enjoyed getting a first view of the series.

Thank You!

Unfounded opinion

A Maryland Circuit court judge has found that Professor Boyd Haley, PhD, and four other self-described autism experts are not qualified to testify in a vaccine-related lawsuit. The decision followed ten days of court testimony.

The judge wrote that Haley and the others are not qualified by "knowledge, skill, experience, training or education" to link vaccines to autism.

One the other hand, after reviewing the science of autism for six months, KOMU did find Prof. Haley qualified by "knowledge, skill, experience, training or education" to link vaccines to autism.

What did KOMU find about Prof. Haley that the circuit court judge missed? Some viewers would like to know.

MADISON, N.J., Jan. 14 /PRNewswire-FirstCall/ -- Wyeth announced today that The Honorable Stuart R. Berger of the Circuit Court for Baltimore City in Baltimore, Maryland, has granted Wyeth's motion to preclude plaintiffs' expert witnesses in an alleged vaccine injury case from testifying that exposure to thimerosal-containing vaccines can cause autism. The court's decision, in the case of Blackwell, et al. v. Sigma Aldrich, Inc., et al., followed a 10-day evidentiary hearing held last August.

Judge Berger found that "thimerosal in vaccines does not cause or contribute to neurodevelopmental disorders such as autism," noting that "it is generally accepted in the relevant scientific community that autism is genetic in origin except in rare instances of prenatal exposures to certain substances at defined periods during pregnancy."

Judge Berger held that plaintiffs had failed to show that the methodologies underlying their expert witnesses' opinions are generally accepted as reliable in the scientific community. He also held that plaintiffs' expert witnesses were not qualified "by knowledge, skill, experience, training or education" or that they could not set forth a sufficient factual basis to support the causation opinions that plaintiffs wished to present to the jury.

"We believe that the court's decision is in complete accord with the overwhelming scientific evidence that there is no link between vaccines and autism. The court correctly applied Maryland law to bar unfounded opinion testimony on scientific issues," says Daniel J. Thomasch, lead trial counsel for Wyeth in this litigation, who is a partner at Orrick, Herrington & Sutcliffe LLP.

Your View shows your comments

You can watch Your View here

Reflections

Wow! We wrapped up the series... I don't even know where to start this blog entry.

We continue to get feedback. I have my gmail account, blog, mizzou email, and Your View accounts... Each one has gotten so many comments...hundreds...I am simply in awe of the impact of this series. It is truly "The little series that could."

Each day it continues to spread. I have received emails from all around the world. Letters continue to pour in.

This series has been the last six months of my life. I have put in countless hours. From picking each word when writing scripts to picking each shot when editing. The sleepless nights... stressing out... Learning Who's Who in autism... and my friends putting up with me constantly talking about autism...this has been an experience I will never forget.

I have been touched by every family...every person. Starting with the Everhart's strength in raising two kids on the spectrum. Tim and Dee's drive to help their son. Andy's courage in being a single parent. Jeremy's determination to adapt and improve his social skills. Linda's activism and journey with Adam’s recovery. These families shaped the series.

A women stopped me in public last week amazed that these families were so open and honest...From using alternative treatments, to a single parent's tough times, the families we featured told us their struggles and triumphs. It was our pleasure to share their story.

I'm slowly trying to get back to a somewhat normal life. I started general assignment reporting again this past week. I have to tell you, it is odd to walk out of the building with a camera and not go talk to someone about autism. It has been a challenge to do day turn pieces. I have been “in the zone” for months, having time to prepare questions, write, and edit. Getting back to a normal reporting routine is taking some time...but I am getting there.

I print all the emails I get. I am putting them all in a special folder. So many are heart felt. I have cried several times while reading them. So many people have called us heroes...I am not a hero. I simply tell stories and had the honor of covering this.

Words can't express what each email/letter means. I wish I could find the words to express my gratitude for this wave of feedback. It is rare for a journalist to be at a loss for words...but I stand in awe of the power of this series and the people that told us their story.

Your View takes on Autism Responses

Today at six we address some of the responses from the series... This is the second time Your View has covered the series... I will post a link once it airs and is on our website.

New autism study once again disproves Thimerosol connection.

Yesterday's Post Dispatch (St Louis for you out of Staters) carried this Associated Press Story on a new study out of California. Seems that Autism rates continue to climb there despite the elimination of Thimerosol from vaccines, several years ago.
Autism cases continue to grow…by AP Science writer Alicia Chang
http://news.yahoo.com/s/ap/20080107/ap_on_he_me/autism_cases
Here is the original study article:
http://archpsyc.ama-assn.org/cgi/content/full/65/1/19

This is confirming of other studies done overseas showing similar results in Countries which eliminated Thimerosol entirely years ago. Their Autism rates are also climbing at the same rate as Countries which continued to use the preservative.
The "Epidemic that Wasn't" photo is disturbing. Not because, as the blogger suggest, they would have been diagnosed with autism today (who knows), but that at least some of these individuals are very likely suffering from Rubella Syndrome. Rubella Syndrome causes microcephaly, blindness and other birth defects.

In other words, these folks pictured are in the state they are in, because their mother had
a case of rubella when she was pregnant. There are almost no cases of this now that MMR vaccine has become routine. Women in family planning and prenatal clinics are routinely tested for immunity to Rubella and if not pregnant, are vaccinated. Vaccine preventable illnesses as the
photo shows, are NOT pretty.

KOMU has done a great disservice to the public by giving unbalanced air to anti vaccine fanatics trying to make a connection that is just not there. I hope the kid reporters so proudly displaying their photos on the blog page are sleeping well knowing that their "reporting" might result in the tragedy of a child dying of diptheria, or tetanus or being born with Rubella syndrome. They could make up for their error by running an equivalent series showing families dealing with
the consequences of vaccine preventable illness...tho they may have to
content themselves with file footage, decades old. Anyone here old enough to remember polio?
Bill Monroe RN

PS: I will reiterate, that thimerosl has not been used as a preservative in vaccines for children under age 3 in Missouri (andmost others as well) for some time now. This was the result of
irresponsible reporting and junk science testimony to the Legislature. So running local stories in Missouri about the danger to children of thimerosol in vaccines is borders on criminal, in my opinion.

The epidemic that wasn't

How many of these children might have been labeled autistic when this photo was taken?

Final Thoughts

I started this series not sure what I was getting myself into. I really didn't have a very good idea of what I would be researching, or what the series truly was. What I was most mistaken about was how huge this series was going to become.

I think everyone started work on this series not really sure what it was going to become or even what direction it was headed in. We began by brainstorming and were all very open to new ideas and ways to get this story across. That's where this blog came in.

We provided a place for all our viewers to come and contribute what they would like to see covered in the series. I want to thank all of you on behalf of the entire team for those contributions, they helped us mold our series into what it became. What I am almost most proud of in this series is the user-directed content and the open dialogue this website provided for our viewers.

My initial research focused on alternative methods to treat autism. This includes bio meds and chelation therapy. Although these are controversial treatments, the fact that parents claim this helps their children makes this newsworthy. I also got to take three trips for this series: I went to Lexington, Kentucky for the interview with Dr. Boyd Haley, Kansas City, Missouri for the interview with Dr. Charles Rudolph, and I went to the Thompson Center in Columbia for the interview with Dr. Judith Miles. I think that even these three interviews show the many different sides of the debate that we showcased in "Combating Autism from Within."

I hope that this series sheds light on the subject matter and judging by the dialogue it created on this website, I know that it did. I encourage everyone to check out all of the extras on http://www.komu.com/. We have extra clips from the interviews, slideshows and behind the scenes footage that will give viewers a more in-depth look at what went into this series.

That being said, the series is not over. There is still a one-hour show left that I encourage everyone to watch. I want to thank everyone who helped with this series, and I want to thank everyone who watched it. I would like to thank everyone we interviewed for sharing their expertise with us and with the viewers. I am especially thankful for those of you who watched the series and came to the site to post your comments. The dialogue you participated in is what I am most proud of in this series.

Frequently Repeated Misunderstandings

We read the earlier posting on this website about our recent article, Blood levels of mercury are related to diagnosis of autism: A reanalysis of an important data set. The posting on this website linked to a on-line critique of our article. We think readers might be interested to know we have had to address a number of questions that have arisen about the mistake we found in the Ip et al (2004) paper and the subsequent erratum that was published by the journal in November 2007. We appreciate that our research has garnered so much attention, but have become increasingly aware that a great amount of misunderstanding exists and much misinformation is being repeated. For example, one blog site has stated that we did not do analyses which we clearly did do, and made it appear that the only problem with the retracted Ip 2004 article was that a one-tailed test should have been used. Unfortunately, this is the very site that was mentioned on this blogsite. We are troubled that this information about what we wrote is being repeated, since it is not accurate on several counts. It is our sincere hope that interested parties will try to keep an open mind and carefully read our article for what it says -- and what it does not say.
http://www.uni.edu/desoto/desoto_hitlan_autism.html
Catherine DeSoto and Robert Hitlan

I just wanted to thank , KOMU TV and the news team for inviting me to participate in this blog/discussion and for your covering of the never ending struggle with Autism faced by so many families all over the world.

Each family approaches their children's Autism in their own way. Some may be worried about their child not having descriptive language while other are just trying to get one word out. Some are trying to get their children to eat, while others which they could stop eating so many wrong foods.

Weather we believe that our children are just different, ill, or vaccine injured, Autism is still an unimaginable challenge to each one of the families affected by it.

CDC Questions and Their Response

Our questions and emails with the CDC are up. Check them out here and comment on this post.
It should be mentioned--the CDC did not send us a hard document in the mail...
The only contact I had with them was by phone and email. In a phone conversation they told me a dialog with Dr. Haley would be counterproductive.

Final Reflection

When I started work on this series back in September, I never could have imagined just how large it would become and how much I would get out of the experience. I started just helping out with researching background information regarding vaccines mercury, laws and the vaccine debate. This allowed me to travel to Lexington, Kentucky for the interview with Dr. Boyd Haley, to Springfield, Missouri to gather more information on Missouri’s mercury law from Senator Champion and to meet Dr. Frank Engley here in Columbia. In covering the vaccine debate as part of our series, I realized how passionate people involved are on both sides of the debate and how important it is to cover the sides fairly.

For the series I was also able to go on the shoots for Jeremy, an adult with autism, as well as Will and the Miles family. Seeing what autism was like through the families was an eye opening experience. Before meeting these families, I was not quite sure of what living with autism and having a family affected by autism were like. I was impressed to see how much Jeremy could tell his mother about different cable companies and it was great when he wanted to help me and Mark change the tape in our web video camera during our interview. Meeting the Miles family was another great experience for me. Right when we pulled into the driveway Will was fascinated with the car and some of the camera equipment that we brought along. Seeing family members become emotional during interviews showed me just how real this disorder is and how it not only affects the person with autism but also everyone around them.

I hope that the blog posts along with our First Veiw videos, picture slideshows and Behind the Scenes web packages allowed viewers to see even more of what went in to putting this series together as well as even more of the stories that we may not have had the ability to put directly into the on air series. I am grateful for all of the comments that we have received on the blog the feedback has been phenomenal. It is so great to be able to share this series online with people outside of our viewing area not only because of the work that has gone into this series but also because the topic of autism is so large and discussion on it should be encouraged in communities everywhere.

Coming up we will be putting together an hour-long show for the series and I anticipate that we will be able to share even more with our audience and keep the topic of autism in the spotlight. I am thankful for everyone involved in this series, I hope that we were able to inform the public on issues relating to autism and I am appreciative of this entire experience.

Series Reflection, Mark

Like all new endeavors, when I joined the research team for this series, I had no idea where our phone calls, researching, weekly meetings and constant brainstorming would lead us.

I truly feel that our team's initial uncertainty as to the direction of this series made the final product that much better, that much more comprehensive. If I were to choose our motto for this series, I would have to say it was to remain open and to stay honest.

If you ask each member of this series, I am sure they would have their own motto, but I am most proud of our remaining open and honest, not necessarily because these are the foundations of journalism, but because I believe these ideals are crucial for positive public change. Being open and honest is what I expect from our journalists, our public and our audience feedback.

I thank each one of our viewer's for their support, comments and most especially their critiques, it truly makes us better. This unfiltered interaction with our audience, which we did by taping our weekly meetings, launching this blog site, and filming behind the scenes web teases, is a fairly new concept, beginning with the rise of this internet age of ours.

As a journalist, it is easy to fall back on self doubt and begin to ask, "will people really care, will they comment?" The comments we received from the viewer's for this series no longer leaves me doubting public sentiment. If we can tell the stories that tap into our humanity, people will always care.

Katie - Final Thoughts

I'm unable to believe that after so many interviews, emails, posts and comments, the Combating Autism from Within series is over. As I've written before, we have worked hard to not only bring you the viewer coverage of all aspects of this disorder, but to involve you as much as possible in this news-gathering process.

Let's be honest - this series would not be what it is without you, our online audience. Thank you for taking the time to read, watch, defend, and critique our work and the work of each other; we're grateful for your feedback and for the chance to hear (or read) your personal stories. When we geared up for the series in August, we had no idea it would turn into such an expansive project, but thanks to your willingness to participate, it really grew and reached more people than we first imagined.

Thanks again for your help and please watch our hour-long show in February to see clips and hear details about how the series came together!