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OLMSTED, THE AMISH AND AUTISM

AmishBy Mark Blaxill

(Part 1 of 2)

One of the defining contributions to autism journalism in recent years has been our colleague Dan Olmsted’s pioneering work with the Amish. Dan made the simple observation that, given the controversy over autism and vaccines, it would make sense to compare autism rates in vaccinated populations with populations in which vaccination was less common. If autism was less common among less vaccinated populations, that would lend support to the concerns of many parents over the link between their child’s regression and the intensive early childhood vaccination schedule now recommended by the CDC.

The easy accessibility of the Amish made them an obvious population to focus on. There have been numerous studies over the years on the Amish and their vaccination practices, all of which support the idea that the Amish often don’t vaccinate their children and, when they do, they vaccinate less frequently than nearby populations. The studies also show that this tendency is not an integral part of the religious beliefs of the Amish, but rather an outcome of their lifestyle and traditional approach to most common practices, including health care. Nevertheless, when encouraged to vaccinate in order to provide health benefits to their children, many Amish parents do choose to vaccinate their children.

So Dan undertook his work on autism with an early focus on the Amish starting with a column, “The Amish Anomaly”, in April 2005. Over the last three years he has continued his work in the area: he has now written close to 20 columns spanning his time as consumer health editor at UPI and as editor-in-chief at Age of Autism. Along the way, he has visited one of the country’s largest concentrations of Old Order Amish in Lancaster Country on numerous occasions and interviewed a wide range of doctors who serve the Amish all over the country, from chiropractors to family physicians to clinics that specialize in special needs children. More to the point, he has interviewed numerous Amish families and has even had the opportunity, with a small group of families, to actually conduct on camera interviews with parents and their disabled children. The opportunity to pursue this topic for an extended period of time has been an investment few journalists make today. Dan’s continued investment in this work is one of the hallmark contributions of his “Age of Autism” franchise and we’re proud of him for it.

Dan has accomplished a great deal with his coverage of autism and the Amish. He has raised awareness of the apparently low incidence of autism in less-vaccinated populations. Without the resources required to conduct and publish a conventional scientific study, Dan has made the Amish autism rate a regular topic of conversation among practicing scientists. Perhaps most notable of all, there’s now a bill in front of Congress co-sponsored by Manhattan Congresswoman Carol Maloney (Dem.) and Nebraska Congressman Tom Osborne (Rep.) (some have called it “the Amish bill”) that proposes that Congress fund the investigation of the simple question Dan asked from the beginning: what is the rate of autism in unvaccinated populations?

One of the benefits of this kind of sustained attention is that it has given Dan the opportunity to seek and receive a lot of feedback, to generate a lot of discussion and to keep learning more about the issues as he goes. To his credit, Dan has actively reported on the feedback he’s received along the way. In addition to his direct conversations with Amish families, he’s heard from doctors, other health professionals and nearby residents of Amish villages from all over the country, people who have first hand experience with the Amish and their practices. He has also heard some critical commentary, most of it from people with strong views and little evidence; as any good journalist must do, Dan has had to impose a filter on some of the less thoughtful feedback.

What we’ve learned so far has generally provided strong support for Dan’s original hypothesis. There are a few, but not many, autistic Amish. The Amish don’t vaccinate their children nearly as much as the rest of us, but their vaccination rates are rising. Interestingly, most of the Amish families Dan found with autism did in fact vaccinate their children: in those cases, the parents report what non-Amish parents often report, that an autistic regression followed their vaccinations. It’s also important to point out that not every case of autism that Dan learned about was vaccinated. However, in those few cases where he came across a small cluster of autism cases in an unvaccinated Amish population, their doctor argued that he had found clear evidence in these children of environmental mercury exposure, especially their close proximity to a coal-burning power plant. In light of the recent report from Ray Palmer and his colleagues at the University of Texas showing an elevated autism risk near such power plants (for a report on this study, see HERE), this makes a lot of sense.

Over all this time, Dan has gathered evidence from most of the major Amish population centers. There are just a few of them in the US, including 22,000 in Lancaster County, over 35,000 in and around Goshen County in Indiana and over 50,000 in Holmes and Geauga counties in northeastern Ohio. Out of a national population of close to 200,000 Amish (over two thirds of which reside in these three states) if we had applied the best current estimate for autism prevalence of 1 in 150, we would have expect to find quite a large autistic populations, well over a thousand, but so far Dan has identified only a small handful of cases, a minute fraction of the autism population size one would expect to find. In his most aggressive possible count of autistic Amish, Dan has identified less than 20 cases, which would give us a rate of no more than 1 in 10,000. Dr. Heng Wang, Director of the Clinic for Special Needs Children in Ohio told Dan that the rate of autism in the Amish in Ohio was 1 in 15,000. In Dan’s words from a June 8, 2005 column, “He means that literally: Of 15,000 Amish who live near Middlefield [Ohio], Wang is aware of just one who has autism [Note: the child was vaccinated]. If that figure is anywhere near correct, the autism rate in that community is astonishingly low…'I take care of all the children with special needs,' he said, putting him in a unique position to observe autism. The one case Wang has identified is a 12-year-old boy."

The consensus over low autism rates in the Amish population is as true in Lancaster County Pennsylvania as it is in Middlefield Ohio. Dan interviewed a Lancaster County doctor named Frank Noonan who had cared for thousands of Amish patients over nearly 25 years and he confirmed the same assessment. "We're right in the heart of Amish country and seeing none”, said Dr Noonan, “and that's just the way it is."

Despite what appears to be quite consistent picture, Dan is neither a diagnostician nor an epidemiologist so he can’t make, nor has he attempted to make, any definitive conclusions regarding the Amish autism rate. He’d simply like to see it studied, just as he’d like to see other unvaccinated populations studied as well. As families dealing with autism know well, there are a number of unvaccinated children with autism, which at the population level makes the problem of autism causation not one of simple black and white answers. But the possible role of vaccine exposure risk is so obvious, especially among regressive cases, that the subject demands attention.

As with all powerfully simple ideas, Dan’s work has also elicited criticism, some of it quite severe. Criticism has come from many sources, including the CDC who have argued to dismiss the finding because the Amish are genetically different; interested epidemiologists who have looked at studying the Amish and come away concerned about sample sizes and methodological issues; and a persistent drumbeat of critics from what I’ve called the wackosphere. The venom that is directed towards Dan from this latter group is quite amazing, including a small group of individuals who have personally harassed Dan with remarkable persistence. We know who they are: they’re the sort of people who get into nasty public fights with their friends and relatives that end up in courts. Pretty unpleasant stuff. As a matter of policy here at the Age of Autism, we don’t allow these people into our discussions. But as I noted in my earlier essay on these pseudonymous avatars HERE, they do their best to spread their arguments out of their virtual worlds into the real world.

As we’ve seen before with respected scientists like Catherine DeSoto, sometimes these avatars meet with success and get some degree of notice in more respectable venues. In Dan’s case, one such channel for avatar attacks to surface in a prominent place has been Lisa Jo Rudy, who manages the autism blog at About.com (an internet publication of The New York Times). Lisa participates frequently here on Age of Autism and we welcome her warmly. She often writes thoughtful posts. On a few occasions, like all of us I suppose, she says some stupid things. One of these came recently, when she made a misguided attempt to blame rising autism rates not on biology but on the difference between Amish and Western culture and also took a careless swipe at Dan’s body of work on the Amish. Besides this deeply misguided attempt to put a humane face on the ghost of Bruno Bettelheim (“at least some of the huge rise in autism diagnoses may be linked as much to culture [which in context meant parental involvement with their children] as to symptoms”), she also got her facts wrong. In her post last month, she made the erroneous claim (most likely she hasn’t really read Dan’s work, only the chatter about it) that Dan argues that the Amish never vaccinate and that there are no Amish cases with autism. “And, at least in this case”, Rudy argued, “Mr. Olmsted is wrong.”

As evidence for her conclusion, Rudy picked up on one of the criticisms that have been circulating through the wackosphere: that Dan has willfully ignored a single clinic, the Clinic for Special Children (CSC) in Lancaster County, that has supposedly seen a lot of autistic children. Dr. D. Holmes Morton, the founder and director of the clinic has made his career out of the study of genetic illness in the Amish and he and his colleagues at the CSC have published a number of scientific articles on his findings.

Rudy picked up another blogger’s interview with one of these co-authors, a pediatrician named Kevin Strauss, who makes the argument that the Amish are little different from the rest of us. Strauss reported that, at least in their clinic, they vaccinate quite a number of Amish children (““We run a weekly vaccination clinic and it’s very busy”). And he also reports seeing frequent symptoms of autism (although like other genetics-focused clinics we have seen, he claims to see only genetic cases, or “syndromic autism”).

But it’s worth repeating again what Dr. Strauss reports: the CSC vaccinates a lot of Amish children; and they see frequent signs of autism. Before raising the obvious inference one might draw from this additional bit of anecdotal evidence, I should say a bit more about the CSC. I’ll turn to that discussion in part 2.

Mark Blaxill is Editor at Large for Age of Autism.

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Well, wow... I appreciate your welcoming my questions and comments from time to time; of course you are always welcome at About.com.

Just so you all are familiar with what I'm up to: I'm a freelance writer and mom of a son with HFA. Naturally, I've been interested in the subject of autism since my son was diagnosed, and being a working writer decided to "marry" my need to know more about autism with an opportunity to write about the subject.

About.com is (as was mentioned) owned by the New York Times Company - but it actually WAS the "mining company" years ago. I started with About.com about two years ago; just after I joined, the Health Channel became an HonCode medical site - and all of the articles I write now include a list of references, and are reviewed by both a medical and a general editor.

When you visit, therefore, you'll see that there are several different "entities" on the site. There is, of course, my blog, to which this article is responding. There's a forum, where quite a few parents and adults with autism discuss issues of interest. But then there is a very large and growing collection of articles (over 300 so far) on topics ranging from the Thoughtful House perspective on the MMR to "how to feed a picky eater with autism." I have done my best throughout to represent a broad range of perspectives on autism - and as possible, where there might be a difference between "mainstream" and "alternative" thinking, I have conducted interviews so that alternative voices can be heard.

Thanks for this opportunity to introduce myself.

Sincerely,

Lisa Rudy, www.autism.about.com

Thanks so much for this excellent summary, which is great to have in the face of so many attacks.

I look forward to Part 2. Just this morning I was one of several people being interviewed about autism on a Minneapolis radio station, and the question of study control groups was raised. I immediately mentioned Dan Olmsted's reporting on unvaccinated Amish.

Earlier in the broadcast one parent on the panel had blithely dismissed the vaccine/autism theory as a "conspiracy theory" because he'd talked about it with his pediatrician. The parent had not brought any books or documents, but by golly he was satisfied to parrot second-hand the opinion of a financial stakeholder probably too busy to read beyond AAP press releases.

People don't know how to get their minds around this issue. It's easier to throw up their hands and say, "I'm done thinking about that." I stressed that we have to find the courage to look.

I have read before that one (stated) reason that the Amish population is not suitable for comparison (genetic mutants) is because of the high incidence of APO-E 4-4 in the Amish. Yet this is the variant that should confer higher risk, at least to Alzheimer's Disease and cardiovascular disease. Dr. Haley's explanation of why APO-E 4 variant might be associated with greater autism risk (two arginine molecules as opposed to variant 2 which is two cysteine; or variant 3 which is one cysteine and one arginine) should then, theoretically, mean autism rates should be higher in the Amish, if anything.

I find this whole issue astonishingly confusing, but I have a simple mind.

I also look forward to part 2, but I would like to see someone comment on the APO-E variant in the Amish.

Thanks, Mark, for taking the time to provide exceptional clarity to thorny issues.
I'm reminded of Lisa Rudy's post here on A-of-A back in April, which illustrates just how uninformed she is about vaccine-autism issues in particular and the biomedical revolution in general:

"Question for Anne: you mentioned "thousands of parents who tell a story just like Hannah Poling's" - can you steer me to info about who they are? Are you speaking of folks who feel their children were vaccine injured, or are these actually folks who can point to mitochondrial issues as a major issue for their children? If the latter - this should be a MAJOR story!

Totally agree, in theory, with those who are working to push back the "statute of limitations" on the vaccine court. I suspect the statute was made on the basis that such injuries would be instantly obvious and easy to spot.

BUT: seems to me that it isn't quite fair to expect the Vaccine Court to pay all of these parents out of taxpayer money rather than going direct to big pharma... What's your take on this issue? Am I right in thinking that parents now MUST bring cases before vaccine court BEFORE going to civil court?

Lisa Rudy (autism.about.com)"

It's every parent's perogative to be satisfied with the scientific status quo about autism ("we don't know the cause, there is no cure, what epidemic?"). But as the editor and mouth-piece for autism on about.com, I find it entirely unacceptable to be as uninformed as Lisa Rudy appears to be. Clearly she has never read Evidence of Harm, or she would know the history of the vaccine court and the statute of limitation. Clearly she has never attended a biomedical conference like DAN!, Autism One, or NAA, or she would know very well who the thousands of parents are that attribute autism to vaccines and their constellation of physiological effects on our children, including mito disorders. And clearly she is a new-comer to Olmstead's UPI series, the Schafer Autism Report, A-of-A, and all the other resources we biomed parents consider to be required reading for "autism 101." I also welcome Lisa's presence here on A-of-A and elsewhere so that she can get up to speed. What I find unacceptable is that she voices opinions and criticisms without doing her homework first. When I was in school, students weren't allowed to participate in the class discussion if they hadn't completed the required reading and assigned homework. How can someone so invested in autism, both professionally and personally, not demonstrate this discipline? Must have something to do with the fact that the New York Times sponsors about.com.

"In Dan’s case, one such channel for avatar attacks to surface in a prominent place has been Lisa Jo Rudy, who manages the autism blog at About.com (an internet publication of The New York Times). Lisa participates frequently here on Age of Autism and we welcome her warmly. She often writes thoughtful posts. On a few occasions, like all of us I suppose, she says some stupid things."

One person's *stupid* is another person's *mantra*. It is folly to not state your bias in the form of a disclaimer along the lines of "I am a parent of a child on the spectrum and I firmly believe that my child was born this way and only behavioral therapies have any merit at all." Parents who work for supplement companies do it on autism lists all the time whilst talking about their products. When you consistently fail to look at a phenomenon objectively because of a strong personal bias, it is your duty to state your position so that everyone knows what mindset you are coming from.

I also think its high time we stopped calling "regressive autism" autism. There's too much confusion. Can we make that into a law or something?

Mark,

Thanks for writing this brilliant piece and sharing it with us. I appreciate your reminder of the intentions behind Dan's Amish research and work, as well as your clarifications of what has actually been stated, as opposed to what some have falsely accused Dan of saying.

I look forward to Part 2!

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