OLMSTED, THE AMISH AND AUTISM
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.
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.