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DAN OLMSTED: "ATTACKING" MY AMISH COVERAGE

FabricateWith enemies like this, who needs friends?

By DAN OLMSTED

A blogger who posts at Autism News Beat has set out to demolish my reporting over the past few years about the Amish and autism –- and believes he’s come up with pretty damning evidence. Toward the end of the piece he asks, rhetorically, “So what’s up with Olmsted? Did a UPI reporter fabricate a story, then pass it off as true?”

Now that can really hurt a guy’s feelings, especially one like me who tries to pass himself off as a non-fabricator. Mr. Beat (the blog is not bylined –- see Mark Blaxill’s piece about the Wackosphere for more about that approach) is referring to my attempts to find autism in the Amish community.

The first article appeared in 2005 and was titled “The Amish Anomaly”:

“LANCASTER, Pa., April 18 -- Where are the autistic Amish? Here in Lancaster County, heart of Pennsylvania Dutch country, there should be well over 100 with some form of the disorder.” That was based on the 1-in-166 CDC rate at the time, which I applied to adults as well as children since I was testing the mainstream view that autism is a steady-state genetic disorder. If so, it should be identifiably present among all generations of the Amish, who tend to stay put and stay close.

But even if you just looked for kids, there should be plenty, since Amish families are large and often have eight, 10, even 12 children (you should see them set the table three times a day for that kind of crowd – it’s a marvel of efficiency and teamwork).

I pointed to debate over the diagnostic criteria for some manifestations of autism, and noted I was looking for “full-syndrome” cases – the unmistakable real deal, so to speak; the kind many people believe is increasing at a frightening rate; the impetus for the creation of Autism Speaks; the reason I started writing about autism in the first place.

Based on that approach, I wrote, “50 Amish people of all ages should be living in Lancaster County with full-syndrome autism, the ‘classic autism’ first described in 1943 by child psychiatrist Leo Kanner at Johns Hopkins University. The full-syndrome disorder is hard to miss, characterized by ‘markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activities and interests,’ according to the Diagnostic and Statistical Manual of Mental Disorders.”

Rather unassumingly, the article stated “I have come here to find them, but so far my mission has failed. ...” I put it that way because my reporting was anecdotal and hardly exhaustive, and if more cases popped I wanted to write about them, too – not waste my time and energy defending some “definitive” conclusion about the Amish and autism. What matters is evidence, or the lack of it, and evidence has a way of becoming clear over time to open-minded people. (For a summary of my work so far, see “1 in 15,000 Amish” on our home page.)

Now, Mr. Beat has nailed me as a fraud as a result of his interview with “Dr. Kevin Strauss, MD, a pediatrician at the Clinic for Special Children in Lancaster County.”  They say I never contacted the clinic (demonstrably untrue many times over but irrelevant here), and Mr. Beat gleefully quotes Dr. Strauss as saying he “sees plenty of Amish children showing symptoms of autism.”

Smackdown! There are “plenty” of Amish children with autism! A serial fabrication has been exposed! Oh, but wait, let’s hear a little more about those children.

Mr. Beat continues: “Strauss said the clinic treats ‘syndromic autism,’ where autism is 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.”

Short people, unusual facial features? Well-known genetic disorders with autistic features? That doesn’t sound like the autism that’s soaring out of sight and causing a public health crisis in the United States at this very minute, does it?

No, it doesn’t. And there’s a reason for that. According to Mr. Beat, “Strauss says he doesn’t see ‘idiopathic autism’ [autism for which the cause is unknown] at the clinic - 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.’”

So, let’s input this data: The sole clinic for special children in Lancaster County, heart of Amish country, doesn’t see “idiopathic” autism – the kind described by Leo Kanner in 1943; the kind that can’t be “explained” as a feature of genetic disorders with constant prevalence rates; the kind that every new parent in America is scared to death of, and rightly so? And this means the Amish have nothing useful to tell us about autism?

You make the call. But I’d say the evidence continues to accumulate that there’s something unusual going on here -- yes, an Amish Anomaly. If it’s genetic protection, so be it – let’s put some gene hunters on the case. If it’s fewer vaccines or a lower vaccination rate or less exposure to another “environmental” factor – something coming from the outside in – so be that, too.  Let’s find out.

I’ve got more coming – much more -- on the Amish and autism. Unlike Mr. Beat or Dr. Strauss, I now have met one Amish child with idiopathic autism and talked at length with her family, and her story is quite significant. Stay tuned while I "fabricate" it -- in the sense of putting it together, not making it up.
--
Dan Olmsted is Editor of Age of Autism

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Question for Dan from Doctor J

I have been following your argument for some time, and included parts of it in our book, The Boids and the Bees. Keep it up.

The scientific community has challenged you on thimerosal, but their profits demand that view.

A sloppy Cornell study suggests TV as a cause. The early found lesion in the brain deals with facial recognition, one of the earliest if not the earliest developmental window children go through. The Amish don't have TV. Is this looked at anywhere?

I remember that my oldest children all had many of their shots delayed because of a cold or ear infection. I'm now very glad because my oldest (the only one who had almost all his baby shots on schedule) DOES show signs of very mild aspergers syndrome. After I read your first report about the Amish, it all just made so much sense. You can't put all those chemicals into the body of baby's, many of which have very immature livers, and not expect something to happen in the developing brain of those baby's.
I'm not against vaccines, I just think they rush them too soon and too much on tiny developing baby's.
I had all my kids inoculated well after their 2nd birthday’s-some didn't get vaccinated till age 3. I would not let the doctor vaccinate them sooner. The baby’s tiny body just can’t handle it. The chemical cocktails they put in the body’s of infants are absolutely insane.
I don't know why they simply change the protocol and delay the vaccines till the liver is more mature.

It is clear that the rate of autism is increasing and that Britain and the USA have been found to the highest rates of this condition.
http://www.guardian.co.uk/science/2006/jul/14/medicineandhealth.familyandrelationships
http://www.usatoday.com/news/health/2007-02-08-autism_x.htm
Autism has also been found to be substantially higher than normal in children of immigrant families.
http://www.geocities.com/jim_bowery/imbamcoa.html
This higher rate among immigrant families could well be because immigrant families are more likely to be ethnically diverse .
In Europe and North America immigrants from the Sudan also have substantially higher than normal rates of autism The sudan is an ethnic melting pot having 600 different ethnic groups.
Link http://countrystudies.us/sudan/35.htm
The amish communities of north America have bred among themselves for decades, they have little to no case of autism among there population. They are ethnically not diverse.
http://www.whale.to/vaccine/olmsted.html
http://autism-news-beat.com/?p=29
http://pittsburgh.indymedia.org/news/2005/06/18948.php
Bearing the above information in mind do you think that autism could be increasing with ethnic diversity.
Thankyou

Elder

Hello Dan,
Many thanks to your efforts with the autism awareness. I live amongst an amish community in southern Michigan. We have 4 children and have only immunized the first one (22 years ago).
I have a few close amish friends and to my knowledge they only immunize for tetnus. Our children have rarley ever been to a doctor and have never had any sickness aside from the basic colds and flus.
I have been knee deep in a study for a girlfriend regarding immunizations and am amazed at the knowledge that has surfaced from when I last studied (10 years ago) With the supporting evidence of mercury/thermasol and autism, it is hard for me to believe that anyone can still deny the connection. Keep doing what you do, I will keep you in my favorites and my prayers, Shelly

AutismNewsBeat,

Way to slay the monster, champ. This is your ticket to glory and saving the world. You just proved that there is no increase in autism, since everything hinges on just one parameter. No parameter, no epidemic...brilliant. Get this guy the Nobel Prize.

Twyla, what reason is there to believe the Amish have been spared autism? If you're looking for an unvaccinated population, there's more productive areas of research than an inbred population like the Amish. We know the Amish vaccinate, and we know some of their children present with autistic behaviors.

And no, "inbred" is not a pejorative term as I've used it.

It doesn't matter that Mr. Olmsted is not a trained researcher. He told his readers that he traveled to Lancaster County to find children with autism, yet he somehow overlooked the clinic that treats children with autism. So how seriously are we to take the rest of what he tells us?

If Mr. Olmsted made a mistake, then he should fess up and tell us so. We all mess up from time to time.

In relation to possible biomedical causes for autism (such as vaccine injury), there is a popular way of thinking these days that goes something like this: "We don't believe it because it hasn't been proven. It hasn't been proven because we are not studying it (i.e. in peer reviewed studies published in medical journals). We are not studying it because we don't believe it. We don't believe it because it hasn't been proven..." ad infinitum.

If something has to be proven before scientists will study it, how can we learn anything new?

As far as I know, Dan Olmstead does not have the credentials or funding or employees to do a full scale study of the Amish. He is investigating as a reporter. He is uncovering information worthy of further study. He does not pretend to have found definitive answers regarding the Amish, at least not so far.

When asked why doesn't the CDC do a comparison of health outcomes between vaccinated and unvaccinated children, the director of the CDC said that it would be terribly difficult to find such children. When asked, "What about the Amish?" she replied that maybe there are other factors such as genes or life style that would impact the rate of autism among Amish people. If so -- as Dan has commented -- wouldn't it be interesting to study these different factors in relation to health outcomes such as autism?

Autism hits people all over the world, regardless of race, culture, or national origin -- including white, black, brown, Asian, Jewish, middle eastern... Wouldn't it be pretty remarkable if the Amish are spared by some genetic anomally? Shouldn't everyone be rushing to research whether the autism rate really is low among the Amish and if so why?

Instead, Dan's findings are cavalierly dismissed in many circles, as are the reports of parents who witnessed their children regressing into autism following adverse reactions to vaccines.

All of us constantly observe the world, draw conclusions, and base choices on our observations. Why is it that in relation to autism many people seem to think we should not make our own observations and draw conclusions, nor listen to other non-scientists' observations and conclusions, but instead should passively wait for scientists to tell us what is true?

But, Tim, although I really like what you have to say, I think your final comment is a bit unfair to Lisa. Her web site says that she is a writer, consultant, and producer, who founded a videography and multimedia company with her husband, and has written about diverse topics "from ancient Chinese culture to undersea archaeology to human evolution to the biology of snails". It doesn't sound like her career is dependent on denying the vaccine-autism link. Although I disagree with her post, I commend her for her creative work, as well as for developing a summer camp program for autistic kids.

Adieu wrote: "If I were you, I would pack up and leave."

That might be a good idea.

My autistic son was learning to jump with his OT. Afterward, he began with a horrible limp. Panicking, I went to the emergency room. After we had his hip and leg x-rayed, the doctor came in and said, "Kids do not injure their hips. Why don't you tell me what really happened to your child." I simply asked, "Is anything broken or not." He said, "No". I took my son by the hand and left. We asked the pediatrician to check him, and he explained it was a simple muscle pull. Give him Tylenol. (This was the same doctor who vaccinated him, then told me that the vaccines didn't have anything to do with his instant alien poops and loss of speach.) We then heard of a Chiropractor who was very good with children, and also charged about 1/100 of what mainstream medicine costs. We took him there. In 5 minutes of examination, she said his hip joint was jammed. This can happen when you, say, miss a step and come down on the joint too hard. She eased it out, and my son walked out-no limp! (She also is very much against vaccines. Both her children are not vaccinated, were born at home, and have never seen the doctor for an illness. They also happen to have antibodies to childhood diseases through the natural exposure process.) During a follow-up visit, as I was waiting in the waiting area, an Amish woman sat with her very well behaved 4 boys-obviously not vaccine poisoned children. She looked up and said, "He looks like a little hot-rod", as my son destroyed the waiting area. I explained, "Oh, he has autism." She politely said, "What is autism? I have never heard of that word. I see almost all the childhood illnesses, because we don't vaccinate." Yeah, she would not, of course, know what autism was. I asked if Amish children die from not being vaccinated. She told me no, we give them chicken soup and bed rest, and they are back to school in no time at all. She told me there was just a whooping cough outbreak, but no children were severely ill or hospitalized, not even their infants. Hmmmm. Chicken soup seems to be the best food for thought here.

Lisa Rudy writes:

"Dan, are you trying to call for a new focus on Amish autism in order to prove that vaccines are to blame for autism among the rest of us? I just don't see how one thing really relates to the other."

It seemed clear to me Dan only wrote this in defense of himself from the unfair commentary of others. He has no "focus" on the Amish, and has never claimed hard and fast evidence, as shown by his comments from the article:

"Rather unassumingly, the article stated “I have come here to find them, but so far my mission has failed. ...” I put it that way because my reporting was anecdotal and hardly exhaustive, and if more cases popped I wanted to write about them, too – not waste my time and energy defending some “definitive” conclusion about the Amish and autism. What matters is evidence, or the lack of it, and evidence has a way of becoming clear over time to open-minded people. (For a summary of my work so far, see “1 in 15,000 Amish” on our home page.)"

Dan has not spent time on the Amish for some time - his suggestion that a study of them was actually discounted by the CDC as being unproductive due to lack of genetic diversity.

Although everyone has the right to their own opinion, reading Lisa's bio on About.com leads me to one very important observation: Like many of those who have stepped up to deny any role of vaccines in the epidemic of autism, her career path is entirely dependant upon staying on the side that has the money.

As Upton Sinclair said: "It is difficult to get a man (or woman) to understand something when his (or her) job depends on not understanding it."

Lisa,

If one wants a control group, the Amish would make a good choice. Then there could be studies done on other groups that have restricted levels of some parameter in question, like populations that don't watch TV. This would take forever though, so maybe we should focus on things that are more likely to cause neurological damage. The examples you gave are not what "folks" would call the most important risk factors (nice little dig at parents who believe anything though, right). Maybe pesticides, poor diet, pollution, vaporized pig brain, or some other factor that is either invasive or affects the body direcly would be a more likely choice. There is probably something else but we can't question that can we.

No, forget it, the increase in autism is all diagnostic substitution anyways so who needs more studies.

"But they also don't use wifi... ultrasounds... pitocin... cable television... or any of the many other "possible factors" that folks point to as causes of autism."

Dan you must be God or close to God. To be able to do this thing when you do not even have a child on the spectrum! You honestly do NOT have to take this crap from people for no reason at all. If I were you, I would pack up and leave. And the rest of these nay-sayers can go back to their appliances or not, depending on how they happen to view them. As for us, we will keep doing what we are doing anyway. We have neither the time nor the energy to deal with hate groups, and silent onlookers who do not seem to have the decency to offer even an iota of support. At times its better to recognize a cause as a lost one and let things go whichever way they may. At this point I definitely am absolutely and truly done.

Don't mean to be picky, but it sounds like no one actually has a clue how many autistic people there are in the Amish community. And I'm really not sure whether, given all the genetic anomalies likely to be evidenced in that community, how relevant it is anyway.

Dan, are you trying to call for a new focus on Amish autism in order to prove that vaccines are to blame for autism among the rest of us? I just don't see how one thing really relates to the other.

True, the Amish may vaccinate somewhat less frequently than typical Americans (though I don't know that for sure). But they also don't use wifi... ultrasounds... pitocin... cable television... or any of the many other "possible factors" that folks point to as causes of autism. As a result, even if we found that the Amish have less autism than the rest of us, I'm not sure it'd prove a damn thing relative to vaccines!

Lisa (about.com guide to autism)

It seems like a personal vendetta for many of those bloggers, as if slaying the Kirby dragon or Olmstead giant is going to save to world. Argue the big picture and they run to minutia to keep up the attack on their evil enemies. Tiresome.

One will never ever get them to agree that autism rates are something beyond diagnostic substitution, so there is no point trying to reason with them anyhow.

Dan,

The ANB writer is a critic wannabe who can't even defend his/her own arguments with evidence. pD and I posted numerous comments citing references on his blog, which he/she proceeded to cherry pick delete, then left one entry which he/she responded to out of context. Classic. It's debatable whether it's even worth having anyone give him/her any hits. At least Orac and the others don't seem to delete responses they don't like.


Thanks, as always, for EVERYTHING YOU DO, Dan.

I can't help but wonder, though, if some of these bloggers who seem to have nothing but time on their hands, are paid shills of the drug companies. I have had more than one experience with people that I suspected this of. One of them, "Eve", a doctor no less, made a big deal out of alleging my measles graph, using CDC numbers, is misleading. You can read more about her and it in my column Scandals: Shoot First, Don't Ask Questions Later at http://www.vaccinationnews.com/Scandals/2003/Sep_12/Scandal66.htm. She used to have a webpage describing herself and what she does, but it seems to be gone now, as appears to be the original page criticizing my graph. But I did copy and paste it onto my website for my column (you can link to it from the article).

"That would suggest less than 10 people in Lancaster County with Kanner's autism, not 50. It would be very easy for an external observer to miss them."
Who cares?
Having it studied IS THE WHOLE POINT! NO ONE WILL DO IT!

Hi Dan -

Nice touch. As a journalist, why not take a camera down there, and interview the guy point blank. "Do you treat any children with autism that don't have obvious genetic causes? How many parents have ever reported a regression followed by autistic behaviors? Is the number of children with autism like symptoms close to one in one hundred fifty of the population in Landcaster county? Do you know of other clinics treating children with autism or autism like syndromes in the Amish community?"

Then on to youtube.

Take care!

- pD

Is your reference to "50 Amish people of all ages should be living in Lancaster County with full-syndrome autism, the ‘classic autism’ first described in 1943 by child psychiatrist Leo Kanner at Johns Hopkins University," a misprint?

I only ask because, according to Lorna Wing, many of the epidemiological studies that looked at Kanner's autism found a rate of 4 or 5 in 10,000. The modern rate of 60 in 10,000 for all autistic spectrum disorders led you to suggest that "in Lancaster County, heart of Pennsylvania Dutch country, there should be well over 100 with some form of the disorder." That would suggest less than 10 people in Lancaster County with Kanner's autism, not 50. It would be very easy for an external observer to miss them.

These comparisons do depend on the Amish of Lancaster County having a comparable genetic make-up to the outside population. It may be, as your article suggests, that the Amish gene pool makes them more susceptible to some conditions than others. Until we have robust genomic studies comparing the Amish with the general population it may be unwise to try and draw hard and fast conclusions about autism based on reports from within the Amish community.

A blogger's semantical tone reveals so much about them. The sneering defensiveness displayed by people like Ken Reibel and Orac spotlights their convenient rejection of our children's health problems. They are so overly focused on intangibles and ethereals -- rhetorical form rather than medical substance. Denialists in skeptics' clothing.

What kind of warped mentality fuels the choice to devote so much time to online character assassination -- instead of listening to researchers working to find successful treatments for sick ASD kids? Although given their online discourse I would not trust those who may be medical professionals with my health, much less my child's.


Tim, Thanks for this comment, it adds more valuable information and is certainly consistent with the picture that is emerging.

"Short people, unusual facial features? Well-known genetic disorders with autistic features? That doesn’t sound like the autism that’s soaring out of sight and causing a public health crisis in the United States at this very minute, does it?"

It is now time to distinguish our "bio-medical" community's autism from the rest of the names for similar conditions being bandied about, unnecessarily clouding the picture. The moment you call it Autism, the purely genetic holders of that condition get upset. You see it perhaps affects them another way entirely or perhaps not at all, and here we are saying its a bad thing, and we are trying to fix it, when they do not really see anything to fix. Then there is this name-calling that is mostly counter-productive, and takes valuable time away from the real issue at hand.

Back to the question of what we the "bio-medical" community should call our childrens' autism. It seems as though since the predominant thought might be that our children were neurotypical and later regressed, it would be safe to use the term "regressive" for our kind of autism. Some children regress with the first vaccine, others after booster shots, still others after the flu shots and then there are those who cannot identify a particular vaccine other than the truth that yes indeed the child did regress. They have before and after videos to prove this regression. Milestones are lost, typical achievements are lost.

Also the term "regressive" has already been used so much by the "bio-medical" community. The word also seems to do a good job of describing this condition with its related (call them regressive) physical health attributes such as - impaired methylation, impaired sulphation, impaired gastro-intestinal function, and finally immune system dysfunction (alongwith impaired respiratory, endocrine, immune, lymphatic, and reproductive systems). Please note that the nervous system has not been mentioned on here. It has been noticed that once the rest of the other impairments have been successfully treated, the nervous system tends to automatically straighten itself out.

That said, anybody who does not have to deal with "regressive" autism can rest assured that this discussion has nothing to do with them. Hopefully this has now been made clear.

I had seen ANB constantly asking about this clinic and why you "did not mention it" on so many blogs and websites I called the clinic myself about a month ago.

I got the phone number from their website which says absolutely nothing about autism. The receptionist told me they "do not treat any child with autism" at the clinic. They do however, as Dan pointed out treat kids that have disorders that are sometimes comorbid with behaviors similar to some autistic behaviors. That is a far cry from ANB implying that those kids have autism or are diagnosed with autism.

When responding to my comment ANB simply pulled out another favorite strategy of the "wackosphere" - to try to drag the conversation into another tangent of irresponsible rhetoric. This is a strategy that works to drag very emotional parents or advocates into aimless debate, wasting our precious time and energy. Most of us have figured this out (yes, I have fallen prey myself - too many times) and stay away from this tactic.

What is curious to me is how those like ANB can find the time, energy and commmitment to comment everywhere, everyday.

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