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.

 

As a young man, Morton earned his way into some of the country’s elite medical institutions: after receiving his medical degree from the Harvard Medical School he did his residency at the Boston’s Children’s Hospital and went on to do medical research at the Children’s Hospital of Philadelphia (CHOP). His mission in life gained focus when, working at the CHOP in 1988, he diagnosed a case of glutaric aciduria (GA1) in a child in a child from nearby Lancaster County. Morton soon learned that GA1, a rare metabolic disorder, was unusually common among the Amish. The disorder can regress into permanent brain damage after an infection from a common childhood illness, or so he believed, many of which might be preventable with better organized preventive care. So alongside his focus on genetics, he has also adopted an aggressive approach towards pediatric vaccination.

Dr. Morton’s work has received widespread notice. Indeed, by the standards of traditional American medicine, Holmes Morton has lived an admirable, even an exemplary life. In deciding to dedicate himself to the problems of genetic disease in the Amish, he gave up a lucrative career as a research scientist and physician, but what he may have lost in income he has made up for in terms of public reputation. Morton won the Albert Schweitzer Prize for Humanitarianism in 1993, was named as one of Time Magazine’s “Heroes of Medicine” in 1997 and was awarded a MacArthur “genius grant” in 2003.

The CSC focus on genetic disorders that has guided Dr. Morton’s life’s work has led the CSC doctors to take a strong view of the genetic origins of disease, (a tendency in genetics clinics that I’ve analyzed in a previous essay HERE). In some cases, this has led them to withhold an autism diagnosis from their patients since they only recognize genetic conditions. As we’ve learned from one response to Rudy’s blog post, a woman named Martha Binckley, the CSC doctors often insist that children who are autistic are not.

This is an interesting subject to me because we are members of the Old Order River Brethren in the heart of Lancaster County and for all practical purposes most folks consider us to be "Amish". Dr. Kevin Strauss saw our son at the Clinic for Special Children three years ago. He would not give Randall a diagnosis for autism because he said these problems are usually genetic and though we have not discovered all genetic disorders out there it was obvious he did not want to give a diagnosis based upon behavioral symptoms alone. He conducted a battery of genetic tests including Fragile X and nothing showed up. He further recommended us to Early Intervention. We followed his recommendation and he had an evaluation with EI and was diagnosed with classic autism by the psychologist. Dr. Strauss admitted that he had the symptoms of autism but would not give him this diagnosis. We did not go back to the clinic for Special Children because we felt like they did not have anything more to offer us. Our son is a low-functioning autistic six year old who lost language and is currently nonverbal. He presents perfectly normal so I would classify his case as idiopathic classic autism.

As a pediatric practice, the CSC has also shown a strong and continued interest in imposing conventional vaccination practices on their Amish patient base. So, relative to other Amish populations, the patient base that engages with the CSC is far more likely to end up vaccinated. Martha Binkley’s comments on her autistic son continued and added further support to this point

On the issue of vaccines, our son was vaccinated at 4 and 7 months along with his twin sister. We then decided to discontinue vaccinating because we were uncomfortable with Randall's response to the vaccines– pale skin, and lethargy. We did not know at that point that he had autism and were unaware till he was 2 1/2 yrs. old.

Dan Olmsted identified the CSC and Dr. Morton as an interesting and potentially important source for his investigation of the Amish and autism early on. He decided to reach out to the CSC and made repeated effort to interview Dr. Morton. He began calling in 2005 and received no response. In early 2006, he got through to Morton’s wife and CSC co-founder Carolyn Morton and was able to interview her briefly. Here’s an excerpt from the interview:

Olmsted: I heard, and I don't know if this is correct, that Dr. Morton had some experience with Amish children who have autism. I've written some about that and talked to other folks who had not seen that, and so when I heard that I just wanted to call up and see if I could talk to him and see what his experience is so I could get a better picture of it for our readers. So that's why I'm calling….

Morton: Right. I know with some of the genetic disorders some of the children here do have autistic-like -- a syndrome that resembles that but whether or not it is really autism...

Olmsted: Right. Well, what you could do if you want is I'll give you my number and you can tell me a good time for me to call him back or whatever you want to do because he's a busy guy and I've got all the time in the world -- at least comparatively speaking. Let me give you my cell phone -- it's 202... --

Morton: OK. I will give him that message.

Olmsted: I sure appreciate it.

Morton: And uh, hopefully he can get back to you or we can get back with a good time to call back.

Olmsted: Great. I really appreciate it.

Morton: OK. Bye-bye.

And that was the last word Dan ever heard from anyone at the CSC. He made repeated attempts to follow up on this phone call, especially after an article published in the March 2006 edition of The New England Journal of Medicine (NEJM) provided data that the CSC had diagnosed autism spectrum disorders in six patients with a rare genetic disorder (see below). Dan has continued calling ever since, with the latest call coming as recently as the fall of 2007. He never received a return phone call.

Meanwhile, as Dan has received isolated reports of autistic (or in some cases mentally retarded) Amish children, he has continued to follow up with their families. In the process he observed a pattern: he kept hearing a drumbeat of stories about vaccine injury, and in at least one case, the injured child had received vaccination from the CSC. Dan has spoken at length with two families, including the parents who blame the CSC for their child’s vaccine induced brain injury (and including one case of autism). Amish families are normally quite camera shy, but because the parents of the injured children felt so strongly in each case, Dan has both of these interviews on tape.

With this as background on the CSC, let’s take a look at some of the range of questions and criticisms that have come up over Dan’s Amish reporting and how the CSC relates to many of them.

The first and most widespread comment has been a genetic counterpoint. This has come most prominently from the CDC, indeed from the Director straight to Dan. Dan asked Julie Gerberding directly at a press conference about conducting studies on unvaccinated populations. In a lengthy response, she did her best to deflect the Amish evidence.
 
I think those kind of studies could be done and should be done. You'd have to adjust for the strong genetic component that also distinguishes, for example, people in Amish communities who may elect not to be immunized (and) also have genetic connectivity that would make them different from populations that are in other sectors of the United States. So drawing some conclusions from them would be very difficult.

The Amish aren’t a representative population, according to this counter. If they have lower rates of autism this must be due to their unique genetic profile. Surprisingly, however, despite the widespread interest in defective Amish genes, Gerberding’s speculation that Amish genes might actually be protective for autism has not inspired a single investigation of the obvious. If there’s an anti-autism gene among the Amish why wouldn’t we want to find that too? Perhaps this study is in process somewhere, but until there is definitive proof, this idea that the Amish are an unrepresentative population due to their unique genetic profiles is pure (and so far unsupported) speculation.

Interestingly enough, the people who repeat this criticism of Dan’s work ignore the fact that he has explored the question of a protective Amish gene himself, and interviewed Duke University geneticist on just this subject. Margaret Pericak-Vance, one of the more prolific autism gene researchers, has also studied dementia in an Amish group and reported in a 1996 study that it is less common than in the outside Caucasian population. According to Dan’s reporting, “She found they also have a lower incidence of a gene called APO-E4. That gene is associated with Alzheimer's disease; in fact, ‘it's the one risk factor that's been confirmed in thousands of studies worldwide,’ Pericak-Vance said. Her deduction: Because the Amish she studied have less APO-E4, they have a lower incidence of dementia; her findings have been ‘just recently confirmed in some updated data we have with the Amish population.’”

A second criticism comes most prominently from the wackosphere: it is that Dan has been negligent in his reporting and has overlooked the CSC. The point of this criticism is simply to suggest that there are indeed large numbers of autistic Amish, but that Dan has just been avoiding the places where he is most likely to find them. These critics cite the 2006 NEJM article by Morton and his colleagues in which he studied 9 Amish children with a genetic disorder known as Cortical Dysplasia–Focal Epilepsy (CDFE) Syndrome, six of whom met the criteria for an ASD.

In fact, Dan has met and interviewed the family of one child whose history bore close resemblance to the CDFE Syndrome the CSC researchers described. The girl and her family are one of the two extensive videotaped interviews Dan has conducted in the last year with Amish families. It's not obvious from the tape that this child, obviously seriously impaired, is autistic: she has lost all her language but she also makes eye contact easily and seems quite socially connected. Distinguishing her autism from her severe mental retardation and seizure disorder is problematic.

Nevertheless, these parents describe a regressive condition in a typically developing child and blame the MMR vaccine for her regression. Is this child’s mental retardation a case of a rare genetic disorder similar to the kind the CSC study identified or a case of vaccine injury in an otherwise typically developing child? As we’ve learned in the Hannah Poling case, public health and pediatric authorities have a strong interest in dismissing vaccine injury as a genetic condition.

One final criticism comes not from the CDC or the wackosphere, but rather from private conversations with Dan himself. He would submit that any tough investigative journalist would suggest that he’s ignored the CSC in a different way: not that he hasn’t pursued them persistently enough for an interview on the Amish and autism, but rather that he hasn’t chosen to investigate the CSC as a source of excessive intervention in the traditional life choices of the Amish and for causing an unknown number of unreported cases of vaccine injury along the way. For a self-critical investigative journalist like Dan, that’s probably the critique of his work that concerns him the most.

For practical purposes, Dan has chosen to make the Age of Autism his focus. It’s a much larger investigation than the patient base of any individual pediatric practice, even an unusual one like the CSC. Taking on the potentially misguided impulses of a service-minded pediatrician like Dr. Morton hasn’t seemed to Dan like a very appetizing idea. After all, there’s nothing Dr. Morton is doing with respect to vaccination practice that’s any different than any other pediatrician in this country, it’s just that he’s working with a population that might have escaped vaccination otherwise. The issue is less Holmes Morton’s intentions, which are unquestionably honorable; rather it’s the unintended consequences of the belief system he represents that Dan is doing his best to challenge.

So let’s summarize the evidence Dan’s work has generated on autism and the Amish and clear up any potential misinformation and confusion that might have accumulated along the way.

• The Amish have both relatively low vaccination rates and very few reported cases of autism. This is not a simple black and white finding, however. Amish vaccination rates aren’t zero, nor are their autism rates. Dan has also uncovered reported cases of unvaccinated Amish children with autism. Contrary to the caricatures, Dan’s reporting has consistently made points about relative risk levels without making extreme or absolutist declarations. More to the point, it’s the numerous series of cultural and medical anomalies that make his work on the Amish so interesting. That’s the reason Dan launched his Amish coverage with a column entitled “The Amish Anomaly” and it’s why he has diligently reported the facts as he sees them, facts that fall on both sides of his theory of the case.

• Far from providing the definitive refutation of Dan’s work, the CSC is simply one of numerous data points and an obviously special case. As a source of diagnostic insight on autism, they’re not very reliable. The CSC doesn’t recognize autism according to parent reports, and describes its mission as being a genetic clinic. As we’ve seen before with such clinics, there is an obvious bias to look past the autism and seek genetic explanations. In the minds of the CSC, like those of other genetics clinics, there is no such thing as autism, only genetic disorders waiting to be discovered.

• More importantly, the CSC population is not very representative of the Amish patient population overall, since encounters with pediatricians there appear to lead to vaccination at a higher than normal rate relative to other Amish populations. To the extent that there are higher rates of autism (or of identifiable genetic disorders with co-morbid autistic symptoms) in the CSC patient population, that only lends support to Dan’s original hypothesis.

• Among the rare Amish families Dan has found with autistic children, some also report regression after vaccines and, like parents all over other parts of the country, attribute the autistic regression to vaccine injury. The push to vaccinate comes from many sources, but one of the most active and consistent efforts to vaccinate the Amish has come from the CSC. The unintended consequences of the CSC’s interference in traditional Amish health practices have never been challenged on an ethical basis and Dan has chosen not to pursue that challenge himself.

• The claim that the Amish have lower rates because they are more genetically homogenous has never been supported by any finding, let alone has it inspired a study. If the Amish evidence on autism rates is somehow not usable because their genes protect them, then why wouldn’t we do both studies at once: investigate rates of autism among unvaccinated Amish families while we also investigate the genes that might protect them?

After three years of ongoing work, Dan Olmsted’s coverage of autism and the Amish provides us with one of the most compelling narratives anyone has ever assembled around the vaccine theory of causation in autism. Yet despite this evidence and despite repeated calls from parents for a study of vaccinated vs. unvaccinated population autism rates, these calls have gone unheeded. The Maloney/Osborne bill has never come up for a vote.

Don’t you think it’s time?

Mark Blaxill is Editor At Large for Age of Autism.