It was a decade ago – “a budding spring day” in April 2005 – that I visited Amish country in Pennsylvania just a couple of hours away from Washington for my first Age of Autism column, titled The Amish Anomaly. I posed the question, “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. 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.”
I was a bit naive. My reporting, which found very few autistic Amish and a much lower vaccination rate than the country as a whole, raised the specter of a link between vaccinations and autism, a link that was starting to get some traction as the autism rate inexplicably exploded in America's children. The effort to nullify what I reported was quick and continuing: Opponents like Seth Mnookin portrayed the Amish Anomaly (which has its own Wikipedia page!) as junk on a par with Andy Wakefield's Lancet study:
“The various vaccine manufactroversies that have spread in the wake of Andrew Wakefield’s bogus claims that the measles component of the MMR vaccine might be linked to autism are too numerous to unpack in one brief blog post. One of the most persistent has been the Amish fallacy: Most Amish don’t vaccinate; there’s almost no record of autism in Amish communities; ergo, vaccines cause autism. (This argument has also been used, time and time and time again, to illustrate the efficacy of a proposed vaccinated-versus-unvaccinated study.)
Oh, Seth, there you go again, though I do appreciate, and I mean this sincerely, being pilloried in the same paragraph as Andy. Yet despite the scorn, the truth has slowly become obvious. Just listen to Max Wiznitzer, a neurologist from Cleveland -- hard by Amish country. He is firm: Vaccines don’t cause autism.
Oh. and the Amish don't have autism!
On Larry King in April 2009, Wiznitzer -- defending the vaccine program, arguing autism has not increased and insisting it is a genetic disorder -- said the rate of autism in northeastern Ohio, the nation's largest Amish community, was 1 in 10,000. He should know, he said: "I'm their neurologist."
That correlates closely with what I wrote in June 2005, still in that first burst of Amish-autism stories, citing another mainstream frontline doctor with first-hand knowledge of the same population:
"The autism rate for U.S. children is 1 in 166 [times change!], according to the federal government. The autism rate for the Amish around Middlefield, Ohio, is 1 in 15,000, according to Dr. Heng Wang.
"He means that literally: Of 15,000 Amish who live near Middlefield, Wang is aware of just one who has autism. If that figure is anywhere near correct, the autism rate in that community is astonishingly low.
"Wang is the medical director, and a physician and researcher, at the DDC Clinic for Special Needs Children, created three years ago to treat the Amish in northeastern Ohio.
"’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.
“He said half the children in the area were vaccinated, half weren't. That child, he said, was vaccinated, but let's not split hairs here. Either vaccinated or unvaccinated, that's a low rate …"
These two vaccine-friendly doctors said the autism rate among children in northeastern Ohio was very, very low? Pre-autism-epidemic low? Uh, yeah, they did.
But what about the second part of the equation, the vaccination rate? Although Wiznitzer insisted Amish kids are vaccinated, Wang gives us a clue to what we're really talking about: in broad terms, he’s saying it’s half and half; 50 percent of the thousands of kids he takes care of are vaccinated. Whether the vaccinated half are injected on time with 49 doses of 14 vaccines before they are ready for school, I would doubt. The Amish do not, or at least didn't a decade ago, feel the mainstream compulsion to vaccinate; they are often born at home or in birthing centers, not hospitals, so no insanely dangerous hep B shot at birth; they usually don't have health insurance and don't make the punctual well-baby visits by which the vaccine program is organized; they tend to see family practitioners, not shot-mad pediatricians, and they attend Amish schools, and only through eighth grade.
Now, if vaccination coverage, full or partial, ever dipped toward 50 percent among the general population, you'd be hearing about the failure of public health policy and the triumph of the anti-vaxxers. Yet among the Amish, it's taken for granted. (Of course, there are studies that refer to higher vaccination rates among the Amish; there are studies that find anything you want, and that are conveniently vague on the schedule the children followed.)
If that's not convincing enough, consider measles.
Ah yes, the measles “outbreak” – the event that supposedly shows how ignorant smug liberal “anti-vaxxers” are ignoring the “proof” that “vaccines don’t cause autism” and creating pockets of resistance in Hollywood and around Whole Foods and wherever rich selfish entitled idiots gather, and are a threat to themselves, each other, their neighbors, their neighbor's child, their neighbor's child's dog, and the future of the republic.
Well, ladies and gentlemen, I give you the Amish of northeastern Ohio. You want to talk about your measles outbreak in your unvaccinated kids? Leave your Volvo station wagon and your cloth reusable grocery bags behind and climb into the horse and buggy.
Even as I was being spit-roasted by the online publication Vox last week for spreading the goofy theory that vaccines cause autism ("Understanding the fear of vaccines: An activist explains why he buys a debunked idea"), another story on their online home page that same day was headlined, “How an Amish missionary caused 2014’s massive measles outbreak.”
Writer Julia Belluz: “Last year was terrible for measles in the United States: there were 644 cases — the highest annual caseload in two decades. Granola-crunching Californians, wealthy Oregonians, and Jenny McCarthy anti-vaccine acolytes have taken much of the blame for this spike. The Washington Post even pointed to Orange County — the location of the current Disneyland outbreak — as Ground Zero in our current epidemic of anti-vaccine hysteria.
“But that's wrong. The real story behind the 2014 outbreak isn't on the West Coast. It's in Ohio Amish country, where a missionary returning from the Philippines turned an otherwise unremarkable year for this virus into one of the worst in recent history. ... The northeast Ohio outbreak accounted for more than half the 644 measles cases last year.”
OK, so they vaccinate less. They vaccinate less and they have less autism.
As I said, the nullifiers were not about to let that stand, even though it wasn't proof of anything, only very interesting anecdotal evidence that, added to thousands of parental accounts of vaccine-induced autistic regression, would have prompted urgent follow-up from an unbiased, child-focused public health system.
A blogger at Autism News Beat quoted Dr. Kevin Strauss, MD, a pediatrician at the Clinic for Special Children in Lancaster County” as saying he “sees plenty of Amish children showing symptoms of autism.” (Plenty – now there is a precise description. Compare to Wang’s and Wizniter’s 1 in 10,000-15,000!)
The blogger continued: “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.”
As I wrote back in 2008: “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, as the blogger wrote: ‘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.’”
This is quite amazing, really -- no autism in otherwise typical Amish kids!
Another piece of evidence supposedly arguing against the Amish Anomaly: a reported higher rate of autism than I, or Wang, or Wiznitzer reported. A blogger named Sullivan, sounding oddly like Seth Mnookin -- do these folks discuss their talking points with Dr. O? -- wrote about it in 2010:
“One of the topics that comes up over and over online is ‘The Amish don’t vaccinate’ and ‘the Amish don’t have autism’. Both statements are incorrect. The Amish have no religious prohibition against vaccination and they do have autism.
“The question of autism amongst the Amish has been studied and is being presented at the IMFAR autism conference this week. The paper, Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish, demonstrates a preliminary prevalence of 1 in 271 as the prevalence of autism amongst Amish children in two Amish communities: Holmes County, Ohio and Elkhart-Lagrange County, Indiana.”
This wasn’t exactly a paper, with all the scientific peer-reviewed trappings that implies. It was more like – in fact, it was – a poster. I took the train to and from Philly just to look at it, and reported:
“Of nine cases identified so far, three were from the same family and all had dysmorphic features similar to the father's that, the researchers acknowledged to me, suggested a genetic problem (not infrequent among the Amish due to their closed gene pool). A health professional I brought over to look at the poster presentation thought this family had signs of something called Menkes disease, an X-linked neurodegenerative disorder of impaired copper transport. Not too idiopathic in my book. (And a noted autism researcher told me he believes he has encountered this family at a conference, and that the mother reported all three regressed after the MMR. Two unvaccinated children were not affected.)
“I wanted to interview the main author at IMFAR, but when I pulled out my tape recorder he demurred. The study wasn’t ready (although already widely cited). And vaccines? Anything about vaccines? They were going to get to that as part of the final report, he said.”
Now, I’m not sneering at this study – or rather, this poster board that the author wouldn’t talk about. It’s evidence, and it deserves to be looked at carefully, and five years after the poster presentation we must be patent, so very, very, patient, as we await the actual study that has already been put to good use by my Amish Anomaly debunkers . (The possible link to the metals-transport disorder is particularly interesting, at least to me.)
Here’s a conversation I had in 2006 with Carolyn Morton, the wife of Holmes Morton, director of the Lancaster clinic for special needs kids.
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...
This, remember, is the place with "plenty" of autism, proof positive that there is no Amish Anomaly; her husband never returned my call.
Looking back over the Amish coverage since my own reporting ten years ago, I'm reminded of two adages, the sports-based one about “kicking sand in the umpire’s face.”
And the one about The truth will out. As the late great Bernie Rimland put it, "The autism epidemic is real, and excessive vaccinations are the cause. ... The truth must - and will - emerge. It is long overdue." And that was in 2003.
Dan Olmsted is Editor of Age of Autism.