Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care

29 Jun

With apologies for opening the subject of the Amish and autism once again, a recent paper in the journal Pediatrics explores vaccination and the Amish: Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care. Seth Mnookin has already discussed this at The Panic Virus at PLoS blogs in Anecdotal Amish-don’t-vaccinate claims disproved by fact-based study.

What is worrisome here is the fact that the nderimmunization amongst the Amish is resulting from parental fears. In a very different study from 2001, Haemophilus influenzae Type b Disease Among Amish Children in Pennsylvania: Reasons for Persistent Disease, most Amish parents who chose to not vaccinate were citing availability and convenience rather than fear as the reason.

To repeat–in 10 years the reasons for non-vaccinating amongst the Amish have changed from convenience to fear. We can’t say exactly why, but it seems quite plausible that the focus on autism, vaccines and the Amish could have played a role.

Given that the “Amish Anomaly” notion seems destined to linger on, I have written up another summary of the history and the facts of the story.

Dan Olmsted, now the owner of the Age of Autism, was once an editor for UPI. It was during his UPI time that he took on the autism/vaccine question that has since dominated his professional life. Back in 2005 he ran a series of stories which investigated the proposed link between autism and vaccines and, in specific, mercury. It was right around the time that the David Kirby/Lyn Redwood book “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy.” was published. This was likely the high water mark for the public’s acceptance of the vaccines-causation idea.

One of the ideas that Mr. Olmsted explored was that of the Amish. He started with the belief that they don’t vaccinate and set out to investigate whether this correlated with a lower autism prevalence. The idea of the Amish being a largely unvaccinated population was set out years earlier. David Kirby describes in Evidence of Harm how Lyn Redwood of SafeMinds discussed this in a presentation she made to congress in the year 2000.

Mr. Olmsted described his investigation starting in a piece, The Age of Autism: Mercury and the Amish . There was plenty of data even then which Mr. Olmsted could have considered which went against his hypothesis. Since then even more data has mounted against the idea.

And, yet, it persists. Often the “Amish don’t vaccinate and they don’t have autism” story pops up in internet discussions following news stories. Books have incorporated the idea. Of course it ends up in alternative medicine books on autism such as Kenneth Bock’s “Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies”. The idea can be found in other boos as well, including “Timeless Secrets of Health and Rejuvenation” (2007) and “Cry for Health: Health: the Casualty of Modern Times” (2010). Again, this is a reason to revisit the debunking of this myth. The myth lives on, even in the face of facts.

In his 2005 UPI article, Mr. Olmsted started out with the assumption that the Amish don’t vaccinate. He set out to see if he could find autistics amongst the Amish, but didn’t look into the vaccination question with any depth:

So I turned to the 22,000 Amish in Lancaster County, Pa. I didn’t expect to find many, if any, vaccinated Amish: they have a religious exemption from the otherwise mandatory U.S. vaccination schedule.

As is well known now, the Amish do not have a religious exemption from the vaccine schedule. They do not have a religious prohibition against vaccination.

This was something Mr. Olmsted could easily have confirmed at the time. He might have checked the 1993 book Amish Society by John Andrew Hostetler (1993), in which he would have found the following statements about medicine:

“Some are more reluctant than others to accept immunization, but it is rare that an Amish person will cite a biblical text to object to a demonstrated medical need…” ….””If the Amish are slow to accept preventive measures, it doesn’t mean they religiously opposed to them…”

He might have made more than a cursory effort to contact people at the Clinic for Special Children in Strasburg, Pennsylvania. The Clinic, aside from serving special needs children (including autistics) runs vaccine clinics and has for some many years. In a piece explaining Mr. Olmsted’s failures, Mark Blaxill (also of the Age of Autism) explained that the Clinic did not return Mr. Olmsted’s phone call. No mention is given why Mr. Olmsted didn’t go to the clinic in his visits to Lancaster County

Had Mr. Olmsted done so, he would have known that this statement, again from his 2005 piece, was incorrect when he relied on a source who claimed a very low immunization rate:

That mother said a minority of younger Amish have begun getting their children vaccinated, though a local doctor who has treated thousands of Amish said the rate is still less than 1 percent.

He also made a misleading statement:

When German measles broke out among Amish in Pennsylvania in 1991, the CDC reported that just one of 51 pregnant women they studied had ever been vaccinated against it.

What is left vague in this statement was the fact that the 51 pregnant women were those who contracted German measles. Not surprising that those infected were largely unvaccinated. This doesn’t tell us what fraction of the whole population were vaccinated though, and is quite misleading.

One might wonder why Mr. Olmsted was not aware that the Amish participated in the eradication of Polio. Conversely, he might have questioned how polio was eradicated if the Amish did not vaccinate. Here is a March of Dimes photo from a 1959 vaccine clinic:


(from March of Dimes By David W. Rose, 2003)

An article available to Mr. Olmsted at the time of his 2005 article, Haemophilus influenzae Type b Disease Among Amish Children in Pennsylvania: Reasons for Persistent Disease, discussed the reasons why Amish parents did not vaccinate their children. While some did cite “religious or philosophical objections”, the majority said they would vaccinate if “vaccination were offered locally”:

Among Amish parents who did not vaccinate their children, only 25% (13 of 51) identified either religious or philosophical objections as a factor; 51% (26 of 51) reported that vaccinating was not a priority compared with other activities of daily life. Seventy-three percent (36 of 49) would vaccinate their children if vaccination were offered locally.

Since Mr. Olmsted’s original series, more data has come in refuting the “Amish Anomaly”. In 2006, a paper was published: Vaccination usage among an old-order Amish community in Illinois. Here is the abstract:

The Old-Order Amish have low rates of vaccination and are at increased risk for vaccine-preventable diseases. A written survey was mailed to all Amish households in the largest Amish community in Illinois inquiring about their vaccination status and that of their children. In this survey, the Amish do not universally reject vaccines, adequate vaccination coverage in Amish communities can be achieved, and Amish objections to vaccines might not be for religious reasons.

It is clear that the Amish do vaccinate and that it would have been simple for Mr. Olmsted to find accurate information about this at the time. It was certainly more difficult for Mr. Olmsted to ascertain what the prevalence of autism might be amongst the Amish. He made the assertion: ““there are only a few of them [autistic Amish] in the United States”.

Of the “few” Amish autistics Mr. Olmsted could find, six were being treated by Lawrence Leichtman. The children were unvaccinated but the doctor who reported them to Mr. Olmsted attributed their autism to high mercury levels. This is not surprising as Dr. Leichtman was one of the early alt-med practitioners working in autism, being part of the secretin fad of the 1990′s. One wonders if the “elevated mercury” levels in these children would stand up to tests performed by qualified medical toxicologists.

Another six autistic Amish, nearly under Mr. Olmsted’s nose at the time of his article, were being treated by the Clinic for Special Children in Lancaster, PA. Six children who had PDD or Autism were at that time being treated and written up for a study in the New England Journal of Medicine. They were missed by Mr. Olmsted. He has since argued that these children are syndromic and, thus, somehow not as relevant to his story. Those arguments aside, this was a clear miss for Mr. Olmsted.

In 2010, a study was presented at IMFAR: Prevalence Rates of Autism Spectrum Disorders Among the Old Order Amish

Preliminary data have identified the presence of ASD in the Amish community at a rate of approximately 1 in 271 children using standard ASD screening and diagnostic tools although some modifications may be in order. Further studies are underway to address the cultural norms and customs that may be playing a role in the reporting style of caregivers, as observed by the ADI. Accurate determination of the ASD phenotype in the Amish is a first step in the design of genetic studies of ASD in this population.

A preliminary number of 1 in 271 is a far cry from “little” or no autism amongst the Amish. Given the limitations of working within a community like the Amish, it is surprisingly close to the 1 in 100 often cited as the autism prevalence estimate for the general U.S. population. The study was being prepared for submission when I checked with the lead author last fall. It will be interesting to see what the final number is obtained for the prevalence.

The IMFAR abstract was available, I believe, before Dan Olmsted’s book, The Age of Autism, went to press. Instead of including this information, he chose to paint autism as rare amongst the Amish using quotes he obtained in 2005 and unsupported statements like, “the most aggressive possible count of autistic Amish comes to fewer than 20 cases, which would give us a rate of no more than 1 in 10,000.” It seems unlikely, given the low sales figures, that The Age of Autism will be reprinted. If that should happen, I wonder if Mr. Olmsted will correct this misinformation. The facts are clearly against him. Certainly, his review of internet sources and cursory tour of Lancaster County hardly counts as “aggressive”.

The “Amish don’t vaccinate and don’t have autism” idea was never very well supported. Now, with more data in, it is just plain wrong. It would be a good and honorable thing for Mr. Olmsted himself to make this clear. Good. Honorable. And not going to happen.

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47 Responses to “Underimmunization in Ohio’s Amish: Parental Fears Are a Greater Obstacle Than Access to Care”

  1. Polly June 29, 2011 at 15:27 #

    Thanks for sharing this Sullivan. I just downloaded and read the paper. I noticed that only 356 out of 1000 surveys were returned. Can we assume the 644 unreturned surveys are non-vaccinaters? Of the 356 returned 68% had given their child at least one shot. Does this mean only 242 of the 1000 families had at least one vaccine? The paper also states that 47% of this group of 242 know someone who had an adverse reaction to a vaccine. With only one vaccine administerd (most likely the Tetanus shot at an older age) this adverse reaction event might raise some eyebrows. It seems if you get all 70 some vaccine doses now reccomended for kids safety might be a concern. Will this paper actually help the pro-vaccine safety camp? Is this another case of research published in Pediatrics raising more questions than answers? Stay tuned.

  2. Chris June 29, 2011 at 17:02 #

    “Can we assume the 644 unreturned surveys are non-vaccinaters?”

    No. You cannot assume anything like that. You might assume that the survey got lost in the house, that they were too busy to bother with it, or just weren’t interested in filling it out. You cannot assume the answer they would have given.

  3. Sullivan June 29, 2011 at 18:54 #

    “Can we assume the 644 unreturned surveys are non-vaccinaters? ”

    As noted above, no, you can not do that. Can I assume that the 644 non-returned surveys are from parents of autistic children, too busy to respond?

    “Will this paper actually help the pro-vaccine safety camp?”

    Somehow I don’t think you and I are referring to the same groups when we speak of pro-vaccine safety groups. The American Academy of Pediatrics and the ACIP are probably the two most active pro-vaccine safety groups in the U.S.. Will this study help them? Yes, it will help them determine how to serve a very special population of Americans.

  4. Ken Reibel June 29, 2011 at 23:13 #

    “In a piece explaining Mr. Olmsted’s failures, Mark Blaxill (also of the Age of Autism) explained that the Clinic did not return Mr. Olmsted’s phone call.”

    It appears that Olmsted only called the clinic after the UPI “Amish Anomaly” piece ran, so it’s understandable why no one returned his call.

  5. Prometheus June 30, 2011 at 19:51 #

    Mr. Olmsted seems to have a habit of not looking for information that conflicts with his Weltanschauung (world-view). As we say in science, “If you don’t look, you won’t find.”

    Could this have something to do with why he is no longer associated with UPI?

    Prometheus

  6. Harold L Doherty July 1, 2011 at 14:46 #

    ” it seems quite plausible that the focus on autism, vaccines and the Amish could have played a role.”

    Any studies providing evidence in support of yout speculation?

    • Sullivan July 1, 2011 at 23:00 #

      Harold L Doherty,

      perhaps if you read the sentence in its entirety, you would be able to answer your own question:

      “We can’t say exactly why, but it seems quite plausible that the focus on autism, vaccines and the Amish could have played a role.’

      Would it be preferable if I made it even more clear?

      “To repeat—in 10 years the reasons for non-vaccinating amongst the Amish have changed from convenience to fear. We can’t say exactly why there is a difference in the reasons given, but it seems quite plausible that the focus on autism, vaccines and the Amish could have played a role.”

      As you note, the above was speculation. I’ll add, it was clearly written so the reader would be aware that it was speculation.

  7. Harold L Doherty July 3, 2011 at 14:19 #

    Thank you Sullivan for making it clear for everyone that you based much of this comment on speculation. Perhaps some of that qualification should have been included in your attention seeking headline/title for this comment.

    • Sullivan July 5, 2011 at 19:52 #

      Harold L Doherty,

      A question for you, if you would be so kind: did you misunderstand my statement above as clearly noting that that sentence was opinion? Do you feel that it was somehow misleading?

      I note that your own use of language is rather imprecise. You refer to “comment”. By this, do you mean the full article above, the statement which you pulled out (and left out a major portion) or a comment in this discussion?

      Do you find it somehow surprising that I have added an opinion in the article? For years now, this blog has had in the header: “Autism News Science and Opinion”.

      Perhaps some of that qualification should have been included in your attention seeking headline/title for this comment.

      You seem to believe that I chose the title in some attempt to “seek attention”. How did you come to that conclusion? Are you aware that the title for the article is the same as the journal article being discussed? If not, how did you miss that? If so, how did you come to the conclusion that I chose the title to seek attention? Have you noticed that this is my usual practice now–to title my articles with the same title as the journal article being presented?

  8. Duncan July 11, 2011 at 14:57 #

    So does this paper suggest that if a group of children is under-vaccinated their autism rate would be significantly less than the predominantly vaccinated general population? 1 in 271 for the Amish yes? 1 in 100 for non-Amish? That’s less than half the prevalence?

    With the ever increasing group of parents who don’t vaccinate isn’t it time to run a large study on those parents vs. fully vaxed children to see what the rate of ASD is? If you did this and came up with the same 1% rate it would seem like an argument killer every time.

    • Sullivan July 11, 2011 at 18:34 #

      Duncan,

      I’m not here to “kill arguments”. I can point you to places that are following that path. Generally, you will find people “killing arguments” whenever a study comes up that lends more evidence against the vaccine-causation hypothesis.

      Now, “So does this paper suggest that if a group of children is under-vaccinated their autism rate would be significantly less than the predominantly vaccinated general population? ”

      Which paper are you discussing? The main paper discussed in the article above does not discuss autism. The 1 in 271 figure is from an abstract

      One can take an idea like “this paper says that the Amish are undervaccinated” and “this abstract says that the prevalence amongst the Amish is lower than for the general population” and propose a hypothesis. Sure. But, you then have to do the next steps: analyze the information you have and challenge your hypothesis.

      And if there is anything to be learned from the Amish/Autism story it is the danger of not challenging hypotheses. Dan Olmsted didn’t really put the effort in to challenge the hypotheses he had: (1) “the Amish have a religious exemption from vaccination”[1] and (2) “all of this suggests that autism as it presents in mainstream American society is markedly absent amongst the Amish” [2]

      (1) is very clearly wrong. Mr. Olmsted should have discovered this to be false without great effort. It took me less than a day to find a scholar on the Amish who made it clear that there was not religious prohibition. Had Mr. Olmsted made more of the minimum effort to contact the Clinic for Special Children, he would have found even more.

      2) He didn’t conclude that autism is somewhat less prevalent amongst the Amish. He concluded that it is “markedly absent”. Granted, he was just a guy driving around asking questions, not an epidemiologist or someone with expertise in autism or developmental disabilities. But this should have tempered his writing. Instead he picked out quotes which instilled fear.

      The fact of the matter is he was wrong. Sure, you can take the bits and pieces of various papers and try to put together support for some portion of the hypothesis. And, yes, you don’t have the position to advertise your opinions that Mr. Olmsted had at UPI. But step back: what did we learn from his failure? That extraordinary claims require extraordinary evidence. Not “I pulled the data together I needed to support my argument”. That isn’t good enough for this discussion. There are real consequences for real people. Mr. Olmsted was irresponsible. I’ll learn from his mistakes, and encourage others to do so as well.

      [1] the UPI series the Age of Autism
      [2] Age of Autism (the book)

    • Sullivan July 11, 2011 at 19:13 #

      With the ever increasing group of parents who don’t vaccinate isn’t it time to run a large study on those parents vs. fully vaxed children to see what the rate of ASD is? If you did this and came up with the same 1% rate it would seem like an argument killer every time.

      How about an investigation into the prevalence of autism amongst adults? I find that the groups promoting vaccine-causation will not support such a study, even though it would not only answer the questions about any “epidemic”, but could give us valuable information about the lives and needs of the autistic adults. Instead, the plan appears to be to wait until this generation of autistics reaches adulthood and then complain that no one took the vaccine causation hypothesis seriously enough.

      Seems like planning for failure to me.

  9. Duncan July 11, 2011 at 14:58 #

    That should read “on those parent’s children” of course.

  10. Stuart Duncan July 11, 2011 at 22:14 #

    I enjoy the response to this at AoA. It begins: “I had a hard time understanding Seth Mnookin’s latest piece about the Amish and autism.”

    Thanks, that’s all I needed to know.

    • Sullivan July 12, 2011 at 02:14 #

      Stuart Duncan,

      luckily, no one has emailed that post to me.

  11. Jonathan Rose July 12, 2011 at 01:29 #

    Suliivan: Granted, it’s wrong to assume that the Amish never vaccinate and never have autism. But the studies cited above indicate that the Amish have lower rates of vaccination and lower rates of autism than the general population — and that is consistent with the hypothesis that vaccines cause autism.

    Moreover, when you’re asked why we don’t perform a fully- vaxed/unvaxed study, you evade the question by changing the subject. That’s why vaccine proponents have an increasing credibility problem among concerned parents: naturally they presume that you’re afraid of what you might find. By all means let’s investigate autism among adults: I don’t know of anyone in the autism community who opposes that, and you provide no evidence of such opposition. Why don’t you vaccine proponents do such a study? What’s stopping you?

    • Sullivan July 12, 2011 at 01:58 #

      “That’s why vaccine proponents have an increasing credibility problem among concerned parents”

      I *am* a concerned parent. Perhaps you need to rethink your premise a bit.

      Vaccinated/unvaccinated studies have been proposed and discussed here repeatedly. Prometheus (another concerned parent) has not only proposed the methodology, but has volunteered to lead such a study.

      “I don’t know of anyone in the autism community who opposes that, and you provide no evidence of such opposition”

      I have proposed the idea on many discussions, posing the question to people who blog for the vaccine-causation groups. Yep, I didn’t provide evidence of their opposition. I don’t bookmark all the discussions I’ve been on. Tell you what–show me where on the websites for Generation Rescue, SafeMinds, NAA, or the blog they run (Age of Autism) that there is any call for a prevalence study on adults. Should be easy. Thousands of posts. Perhaps you could show me where any environmental cause of autism is given support, other than vaccines or autism.

      I don’t read their blog anymore (very low information content, very high anger content) so it is possible I missed it.

      “Why don’t you vaccine proponents do such a study?”

      I have. Here are some public comments to the IACC that I made in the past:

      The future is now. Autism is a lifespan condition and should not be considered as a childhood disorder. There is a large contingent of unidentified adult autistics. The cost estimates for autism include large indirect costs for adults which includes a large loss of income. Obviously there is a large return on investment possible if we can improve the employment opportunities of adults. Even if one assumes that the true autism incidence has been steeply rising, the time to prepare for the autistic children to become adults is now. The time it will take to understand the issues and develop the supports needed is long. We need to focus attention on adult issues. This is probably one of the most important issues the IACC can focus upon and is one of the least funded areas.

      and

      We are obviously missing a large fraction of both adults and children with ASDs. The Autism and Developmental Disabilities Monitoring (ADDM) Network identifies a number of children who previously did not have an ASD diagnosis. It is very likely that the vast majority of ASD adults are unidentified and underserved.

      and

      The introduction uses the oft-cited cost estimate for autism. That estimate found that the majority of the “cost” is for indirect costs in adulthood. This is largely lost wages. Doesn’t this suggest that a greater focus should be placed on the adult community? It is highly likely that we have a very large unidentified and underserved adult autistic population.

      Can you show me a similar comment from someone from, say, Generation Rescue?

      “and that is consistent with the hypothesis that vaccines cause autism.”

      Yep. And if we ignore a mountain of evidence, we can spin our wheels looking into it.

  12. Andrew July 12, 2011 at 01:52 #

    >Granted, it’s wrong to assume that the Amish never vaccinate and >never have autism.

    I think you mean that it was a lie that the Amish never vaccinate and that they never have autism – since Olmstead apparently never made any serious effort to find out the truth. This is why we parents of autistic children have a hard time taking the anti-vaccine advocates seriously.

    • Sullivan July 12, 2011 at 17:53 #

      Jonathan Rose,

      By my accounting, Generation Rescue has wasted more than $1 million on a combination of full page advertisements and a phone survey. Could that have been better spent? Do you believe that money could have answered the questions you pose?

      Practically speaking, I would say no. I’ve read the proposal for the Generation Rescue vaccinated/unvaccinated study and I doubt it will be valuable. They failed to get money from the Airborne settlement (left over from a class action suit run by the Center for Science in the Public Interest). I have no problems with a vaccinated/unvaccinated study. I do have problems with one run by Generation Rescue, and I made that very clear at the time the money from Airborne was being dispersed. Unfortunately, GR has shown itself quite capable of putting out fake science. A great example of that is their comparison of vaccination rates, autism and childhood mortality. The way the story was crafted in that document was (a) misleading and (b) misleading in a way that was obviously not a mistake.

  13. Chris July 12, 2011 at 03:03 #

    Jonathan Rose:

    Moreover, when you’re asked why we don’t perform a fully- vaxed/unvaxed study, you evade the question by changing the subject.

    Actually, I have different perspective. Since my son has suffered from a now vaccine preventable disease, which may or may not be the reason for his disability, I tend to shy away from any vax/unvax study that will leave children vulnerable to disease. (the neurologist indicated that the brain damage may have occurred before he was born, or it could have been any of the seizures he had)

    I personally do not want anymore of my tax dollars chasing the vaccine/autism connection after so much time and money has been spent on it. If Age of Autism, SafeMinds (which has funded studies), Generation Rescue, NVIC, NAA and others who keep repeating a need for a vax/unvax study really want it, then they can fund it. Mr. Rose, ask the folks who claim vaccines cause autism why they not funding the study they keep pushing. Encourage them to contact Promethesus about the study.

    I personally would rather see my tax money go towards improving services to disabled adults like my son.

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    • Sullivan (Matt Carey) August 29, 2012 at 00:50 #

      lilady,

      thanks for the alert. Arden is gone.

  15. lilady September 11, 2012 at 16:14 #

    Spammer Alert above

    Classifieds…….

    • Sullivan (Matt Carey) September 11, 2012 at 17:58 #

      thanks–”classifieds” is back in the spam bucket.

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      Irony – a spam blog spamming another blog about spam solutions…..

      • lilady December 9, 2012 at 15:59 #

        Good catch Lawrence.

        Cripes, I cannot stand these spammers.

  19. lilady December 10, 2012 at 07:56 #

    Another spammer above…this time spamming in an (unknown) foreign language.

    • Sullivan (Matt Carey) December 11, 2012 at 02:10 #

      Thanks for that–spammer is gone now.

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  27. Herb Wagemaker, MD September 18, 2013 at 15:47 #

    The solution to this is quite simple. Compare autism in kids vaccinated vs. autism in kids not vaccinated. It seems that autism in the unvaccinated amish kids point to other causes for autism

    • Sullivan (Matt Carey) September 19, 2013 at 01:43 #

      How is this a solution to the underimmunization of the Amish caused by parental fears?

      Why only consider kids? Why not compare the autism rates in the adult population to that of children? It’s a really hard study to do well, but it would tell us if there is a real increase in the fraction of the population that is autistic by today’s standards.

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Trackbacks/Pingbacks

  1. Vaksiner og Amish – en siste gang (?) « Skepsisbloggen - June 29, 2011

    [...] Autism Blog som har mye mer, poengtert og lesverdig, inkludert om historikken. Men de overtolker studien: den [...]

  2. Autism Blog – Underimmunization in Ohio's Amish: Parental Fears … | My Autism Site | All About Autism - June 29, 2011

    [...] Read more: Autism Blog – Underimmunization in Ohio's Amish: Parental Fears … [...]

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