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By DAN OLMSTED   |   June 14, 2005 at 3:29 PM

WASHINGTON, June 14 (UPI) — Readers of this column have reacted strongly to our series of reports on autism among the Amish. So far, we have found only a handful of cases of autism and have quoted some experts who think it is nearly non-existent in this group.

Below are comments from readers who dispute the idea there might be proportionately fewer Amish with autism. Others argue that even if there are, it proves nothing.

A number of readers said the series seemed to implicate vaccines unfairly as a cause of autism, because the Amish have a low vaccination rate. Some parents of autistic children, along with a minority of experts, suspect that a mercury-based preservative called thimerosal used in vaccines through the 1990s could have triggered an autism epidemic, though most mainstream researchers reject the premise.

It is worth noting we quoted people who raised the issue of childhood immunizations, as well as the possibility that environmental mercury exposure could be a factor, but we have drawn no conclusions about what might account for a lower autism rate among the Amish — if in fact that is the case.

A selection of responses:

I have followed your series of articles with interest.

They all sound a similar note, that you have investigated and not found significant numbers of autistic children among the Amish, so you assume that it’s because the population generally isn’t exposed to childhood vaccinations with the preservative thimerosal.

I’m not a scientist, but this seems like an awfully unscientific approach. There is no way to determine whether you are reaching a representative sample of Amish. More troubling, if you’ll forgive me, is that you can’t control for any of the other variables. The Amish lifestyle, and for that matter the gene pool of this smaller and somewhat isolated population, is different than ours. There must be scores of differences in environmental exposures including the food they eat, the water they drink, other medications they take or don’t take, exposure to industrial toxins, pesticides, physical activity patterns, and the like.

Discovering the cause of autism in our society is an important and pressing task. Unless the true cause is discovered, prevention and treatment cannot be effected. With all due respect, I’m not sure that speculation like this advances the cause.

I think your approach makes a wonderful case for there being almost no Amish autistics. It’s unfortunate that many people don’t have critical thinking skills and will look at this all as proof that the government doesn’t care about them and that it’s all a conspiracy … and in the end will either not vaccinate their kids, thimerosal or not, or will delay vaccinating them significantly enough to endanger them.

I hope when you are finished you will follow outbreaks of vaccine-preventable diseases. There’s a serious rubella (German measles) outbreak in Ontario right now that started in a religious community which, like the Amish, has low rates of immunization. The thing about this is that it’s not staying in the religious community, it’s spreading and may cause the deaths of unborn babies and severe disabilities in them if they are exposed to rubella (in the womb).

Interestingly, rubella infections like this are a minor cause of autism. Maybe it will become a more common cause of autism.

I think the factor you’re not capturing is that the Amish are a genetically homogeneous population, and virtually everyone acknowledges that autism has a genetic component. If there truly is little to no autism in that community, it would appear that the genes just aren’t in their pool.

Also, there are any number of lifestyle and environmental differences that preclude a leap to the conclusion that their low vaccination rate has something to do with the incidence of autism.

You are misleading the entire autism community. … To publish findings requires a lot more than asking a community to e-mail you and claiming no occurrences when you don’t get a response. Shame on you!

Note that the Amish are a basically “closed” population. (When was the last time an “English” married into the Amish? I don’t know the answer, but I’m guessing it’s rare, if not nonexistent.) If they didn’t have the autism “gene” (if there is such a thing) 100 years ago, they probably don’t have it now.

By DAN OLMSTED   |   June 16, 2005 at 10:45 AM

WASHINGTON, June 16 (UPI) — This is the second of two columns sharing reader response to our exploration of autism among the Amish.

The first part, published Tuesday, was devoted to criticism and caveats about such an approach — which so far has turned up only a handful of cases of autism in the Amish population of the United States. Several of those cases occurred in the distinct minority of Amish children who have received immunizations. Four others were attributed by their doctor to exposure to environmental mercury.

Some parents and a minority of medical experts think vaccines — in particular, a mercury-based vaccine preservative called thimerosal — triggered a huge rise in U.S. autism cases in the 1990s; that theory is rejected by most mainstream medical groups. Thimerosal was phased out of vaccines beginning in 1999.

Today’s column hears from readers who think “The Amish Anomaly,” as we called it in the first report, is significant.

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I have to tell you that I read your first article and I cried like a baby — like I haven’t cried in a very long time. Those of us that are “English” (non-Amish) already know what this article drove home to me in the most earth-shaking way. This was done to our kids. My son didn’t have to be so autistic. We didn’t have to have every moment of our lives and every cent we will ever make dedicated to saving our son’s life. It is just more than I can even bear at times, knowing it could be stopped and knowing there are children out there right now that we are going to lose because of this.

My son just turned 8 and has made a lot of progress. We have done everything biological possible (but the money keeps running out) and he does a home Applied Behavior Analysis program. Three years ago he couldn’t show you even four body parts and now he is doing simple math.

I am humbled every day by the strength of his conviction to learn and to talk.

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While I agree with several of your readers who protest the “unscientificness” of your series of articles on the rate of autism in the Amish (a fact that was acknowledged at the outset), at the same time, it is not as if there is nothing more to indicate mercury as a significant factor (if not the culprit) in the relatively recent explosion of autistic diagnoses than the say-so of a handful of unscientific people.

We have the recent study completed at the University of Texas that indicates that areas with mercury pollution have a higher incidence of autism. There was the teething powder with calomel that caused Pink’s disease (and took them 60 years to figure out the mercury connection). Mercury was eliminated from use in latex paint, in the making of hats, as a fungicide on seed — and pulled off the shelf as merthiolate. It is too dangerous to allow for topical uses. Why would it be safe for internal use?

To say that there is no legitimate reason to suspect that thimerosal is a major cause, if not the cause, of autism is incredible to me. True there could be other factors involved and we know that there are other potential causes of autism, but given the knowledge and evidence that we already have to date regarding mercury, directly injecting it into the bloodstream of newborn infants — especially when it is not even necessary — is surely something approaching insanity.

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I hope that medical professionals find your investigations compelling enough to research further.

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I have been asking myself that question — why aren’t the Amish afflicted? I am the mother of a 7-year-old autistic son and live in Pennsylvania. I have been exposed to the Amish my whole life.

It seems at least once a week somewhere I go I see an autistic child or at least someone who has an autistic child. But never have I seen that in the Amish community.

I’m not one of those parents that are convinced that immunizations are the cause. But it seriously makes me wonder when, from what I heard, they do not get immunized or at least not as much.

Its not like they don’t eat the same food as us — I see them at Wal-mart buying the same stuff. So beside them having a purer bloodline, there is not that much of a difference between us besides the shots.

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From the Web site adventuresinautism.blogspot.com, created by the parents of an autistic child:

This series begs the question, why the heck isn’t Lancaster County crawling with investigators from the CDC and the Department of Health and Human Services? If I was Secretary Leavitt, that place would look like a scene out of “Outbreak.”

Can someone get him on the phone and let him know that this is perhaps something the government might look into?

By DAN OLMSTED   |   June 8, 2005 at 1:29 PM

WASHINGTON, June 8 (UPI) — The autism rate for U.S. children is 1 in 166, 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.

Like stitchwork in an Amish quilt, Wang’s comments extend a pattern first identified by United Press International in the Pennsylvania Dutch country around Lancaster, Pa.

— A Lancaster doctor who has treated thousands of Amish for nearly a quarter-century said he had never seen any autism. “We’re right in the heart of Amish country and seeing none — and that’s just the way it is,” that doctor said last month.

— An Amish-Mennonite mother with an adopted autistic child said she was aware of only two other children with the disorder. “It is so much more rare among our people,” she said.

— UPI also found scant evidence of autism among the Amish in Indiana and Kentucky, two other states with sizable Amish settlements.

Ohio, with the nation’s largest Amish population, appears no different. Asked if he thinks the autism rate among the Amish is low, Wang said: “I would agree with that. In this country, the Amish have less autism. Why? That’s a very interesting topic. I think people need to look into it to do more research. This is something we could learn from.”

Wang said the Amish boy’s autism is of “unknown etiology,” meaning the cause is undetermined. In response to a question, he checked the medical chart and said the boy had received routine childhood immunizations.

The Amish have a religious exemption from immunizations, and traditionally only a minority has allowed children to receive the shots. That number has been increasing, however, and Wang said most Amish parents in the area he serves do vaccinate their children, although that varies greatly by community.

The question arose because in Pennsylvania the Amish-Mennonite mother described what she said was a vaccine link to the cases. She suspects that her adopted daughter, who received immunizations both in China and again after arriving in the Unites States, became autistic because of the shots. She said a second child with autism in the community had “a clear vaccine reaction” and lapsed into autism.

Some parents and a minority of medical professionals think a mercury-based preservative in vaccines — or in some cases the vaccines themselves — triggered a huge increase in autism cases in the 1990s, leading to the 1-in-166 rate cited by the Centers for Disease Control and Prevention. In 1999 manufacturers began phasing out that preservative, called thimerosal, at the CDC’s request.

Most mainstream medical experts and federal health authorities say a link between thimerosal and autism has been discredited, although the director of the CDC told Congress she is keeping an open mind about the possibility.

Wang said he did not want to offer an opinion about whether the Ohio boy’s vaccinations might be linked to his autism.

(A Virginia doctor told UPI he is treating six other Amish children with autism, none of them vaccinated. In four of the six cases he suspects their autism was triggered by mercury toxicity due to environmental pollution.)

Middlefield’s DDC Clinic — the initials stand for Das Deutsch Center — opened in 2002 as a collaboration between the Amish and non-Amish communities to aid children with rare genetic and metabolic disorders.

The Amish are prone to genetic disorders because of their isolated gene pool. The clinic has identified 37 genetic diseases among its patients and formed partnerships with 10 research groups and several medical centers.

“The Clinic evolved from the desire of Northeast Ohio Amish families to find answers for their children with genetic disorders,” the clinic’s Web site explains. “These disorders require attention and research beyond that provided by conventional medicine.”

The Amish hope “any research obtained from their efforts has the potential to benefit special needs children throughout the world. This is their gift to us.”

That gift, it now appears, could also hold clues to autism.

By DAN OLMSTED   |   May 20, 2005 at 8:46 AM

WASHINGTON, May 20 (UPI) — The cases of autism among the Amish that I’ve identified over the past several weeks appear to have at least one link — a link made of mercury.

That’s not something I expected to encounter. I had been looking for an unvaccinated population to test the controversial idea that vaccines, and in particular the mercury-based preservative called thimerosal, could be behind the apparent rise in autism cases over the past decade.

The concept: If the Amish have little or no autism, it might point a finger at something to which they have not been exposed.

Most of the medical establishment, it must be stated upfront, considers the idea that thimerosal could have played a role in the rise of autism disproven and dangerous. As noted in the last column, however, the director of the Centers for Disease Control and Prevention says she has “an open mind” about that possibility.

So do I, having come across correlations that made me want to look more closely at thimerosal. For instance, the first child diagnosed with autism in the United States was born in 1931, the same year thimerosal was first used in a vaccine. And autism diagnoses exploded in the 1990s, the same decade children got an increasing number of thimerosal-containing vaccines (it was phased out starting in 1999). Tantalizing, but proof of nothing.

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. 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.

To cut to the chase, what I’ve found to date is very little evidence of autism among the Amish in Lancaster County, far below the 1 in 166 rate of Autism Spectrum Disorders the CDC cites for children born in the United States today. I don’t discount the idea that they might be more difficult to find or diagnose, and I’m still looking.

I did find three or possibly four children with autism and, weirdly, a possible link to vaccinations. One was a child adopted from China, where she got all her vaccinations before being vaccinated all over again when she got to the states. Her Amish-Mennonite mother said she believes that vaccine load caused her autism. The mother told me about another child who had what she described as an immediate vaccine reaction that left her autistic at age 15 months.

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.

The pattern I was noticing then took an interesting twist. From a doctor’s posting on an alternative health Web site, I learned about several cases of autism among Amish children who had not, in fact, been vaccinated.

I called that doctor, Lawrence Leichtman, at his office in Virginia Beach, Va. A pediatrician and geneticist who has been widely published in medical journals, he told me he was treating six unvaccinated Amish children and adolescents — three from Pennsylvania, including one from Lancaster County; two from Ohio, and one from Texas.

That seemed to render any relationship between autism and mercury exposure in the Amish less likely. But, not after what Leichtman said next.

“By the way,” he volunteered, “four of these six kids all have elevated mercury. The only two that don’t, one of them is from Texas and one is from Iowa. But all of the people in Pennsylvania and one of the people in Iowa have elevated mercury.”

Given what I had already come across in Lancaster County, I wanted to hear more about that. Were the mercury levels significantly higher? I asked. “Oh yes,” he responded.

What did he think was going on?

“The people in Pennsylvania, I’ve actually tracked back on them,” Leichtman said. “There’s definitely a plume from one of the coal-fired power plants that just goes right over them. And the one in Iowa, it’s a little less obvious because actually he’s in the Amana Colonies, but I have seen reports of the area around Amana having elevated levels of mercury in the environment.”

As it happens, the Pittsburgh Post reported last week that Pennsylvania has four of the nation’s 10 “dirtiest power plants.” Mercury is a byproduct of coal combustion.

Leichtman also believes that northern states “get most of the prevailing wind that comes across the Pacific. You get that trans-Pacific flow which is all Chinese mercury. We’re getting a load of Chinese mercury, as far as I can tell.”

Leichtman’s comments meant that the two people I talked to, who knew anything about autism among the Amish, independently brought up mercury exposure — in vaccines and in the environment– as the cause of most of the cases.

That’s a link others have made, although not to the Amish, whose autism prevalence has apparently never been studied:

– “We believe that thimerosal and environmental mercury — which are worldwide pollutants — are behind the surge” in autism in the 1990s, wrote Sallie Bernard in 2002. She is a founder of the group Safe Minds, which wants mercury out of all medical products. Bernard co-authored a controversial 1999 study about thimerosal, “Autism: A novel form of mercury poisoning.”

– “In the end it is mercury in the brain that causes such problems, and that mercury can come from several sources,” said Boyd Haley, chairman of the chemistry department at the University of Kentucky and another maverick on thimerosal.

“Therefore, a logical approach is to think that all mercury exposures are additive, even if some may be more causative than others.”

Haley cited a recent Texas study, first reported by United Press International in March, that found an association between autism rates and exposure to industrial mercury emissions in Texas counties. One county with high autism but low exposure to mercury emissions turned out on closer inspection to be the site of a huge abandoned mercury mine, the researchers found.

Leichtman believes the damage to children is being done by environmental mercury, not the mercury in vaccines (my own research makes me think that if it’s either, it’s both). He said he can detect elevated mercury levels in about half his 500 autism patients.

“Environmental mercury is horrible,” he said, “and I think that’s where it’s coming from. To me, people with autism are the canaries in the coal mine. A lot of them are reflecting the damage from all of that.”

Leichtman, like a number of other doctors, is trying to flush mercury out of autistic children through a process called chelation (key-LAY-shun).

Chelation as a treatment for autism is unproven and controversial (what about autism is not unproven and controversial?), and it carries a risk of serious side effects. Chelation has been used for 40 years in cases of heavy metal toxicity, including lead poisoning.

But does it help children with autism?

“The people in Pennsylvania wouldn’t take chelation,” Leichtman said, and noted the Amish aversion to medical procedures and drugs. “One in Iowa did. He certainly did better.”

We’ll look at chelation and its implications in the next column.

By DAN OLMSTED, United Press International   |   July 6, 2005 at 3:09 PM

Who knew the longest word in the English language would be the best one to explain what is wrong with a newspaper article?

The word is related to establishment bias, and the newspaper in question is none other than The New York Times.

June 25, the paper that sold us on WMDs in Iraq and virtually convicted Wen Ho Lee as a spy for the Chinese, weighed in with a front-page story on whether vaccines cause autism.

Preposterous, the Times concluded, without dirtying its white-gloved hands by actually having to say so. All the right people agree, and the Times quoted them to persuasive effect. The headline said it all: “On Autism’s Cause, It’s Parents vs. Research.”

Those whose eyewitness experience convinces them otherwise were cast as hysterical, homicidal scientific illiterates who talk to God through elderly gentlemen and lock children in saunas in their crazed attempts to make money.

The right kind of people, apparently, do not include thousands of parents of autistic children, or thousands of Amish, almost all of whom do not vaccinate their children and do not seem to suffer much autism.

The parents say they have watched their children descend into autism after receiving vaccinations. Doctors who treat the mostly unvaccinated Amish say they have seen every other kind of disorder, but almost no autism.

Who cares, when you have “medical experts” and peer-reviewed “scientific studies” galore? These people are credentialed, for Heaven’s sake. They teach at the schools and work at the agencies that count. They hew to the scientific method. They are top-drawer — and they say autism is not caused by vaccines.

Why, then, does the intellectual version of trailer trash — untutored parents, the frightfully out-of-its-depth “lay press,” people without the right degrees, the right pedigrees, the right publications, the right to an opinion — keep intruding on this turf?

Because the matter is nowhere near as cut-and-dried as the Times has portrayed it. Absent, for example, were any of the studies that do point a finger at vaccines and the mercury-based preservative thimerosal. Also missing were the critiques of the science the Times relied on, critiques that may be wrong but are certainly worth hearing.

Dismissed were all of the alternative treatments many parents say vastly improved their children’s condition. As the Times noted, no studies confirm that assertion, but why not? Why not study them urgently and, if it is discovered that removing mercury from autistic kids’ systems really has some effect, what are the implications of that?

Nor was there an acknowledgement that, although the experts maintain there is no link, they have never — never — studied the most obvious population: the unvaccinated. All they would need to do is count the number of unvaccinated children with autism and compare that ratio to the rest of society.

If the experts had done this, that issue could have been taken off the table by now. Instead, the real debate is stuck at the starting gate. Health officials at the Centers for Disease Control and Prevention say they do not even know if autism has increased in the past decade, although they have had 10 years to figure it out.

I am sure the Times will be very sorry if it finds its editors were in error about the subject and condescending to the parents of autistic children. We can see the Editor’s Note now, modeled on “The Times and Wen Ho Lee”:

Headlined “The Times, Vaccines and Autism,” the editors admit “that our dismissal of the theory was premature and relied too heavily on epidemiological studies that proved to be flawed and that we did not review independently. Worse, we undervalued the eyewitness accounts of parents who watched their children disappear into autism after vaccinations.”

The worst part is the Times probably will make the same mistake again on some other important issue — unless it fixes its fatal flaw of comfortable certainty, otherwise known as arrogance or, in the terminology of the Greek tragedy this is, hubris.

Offering alms to the autistic in two or three years really will not suffice. The New York Times — plus ABC, NBC and many others, for that matter — needs to join the rest of us who are thinking for ourselves and grappling with whether vaccines — the greatest public-health achievement of all time — inadvertently triggered a disaster for a minority of families.

Getting back to our original theme, the problem with the Times is establishmentarianism, “the doctrine of supporting the social or political establishment,” as wordreference.com describes it. Those who diss that establishment encounter another layer of rejection: antidisestablishmentarianism. At last, a practical use for that word!

Until the simple question of what causes autism is clearly established, a lot of people touched by the condition just will not shut up, whether that distresses the enforcers of the longest word in the English language or not.

By DAN OLMSTED   |   June 6, 2005 at 2:34 PM

WASHINGTON, June 6 (UPI) — Part 2 of 2. This column in recent weeks has focused on two related questions: Is the prevalence of autism lower among the Amish, and, if so, how do they differ from the rest of us?

Neither question can be definitively answered by our unscientific and anecdotal inquiries. A more comprehensive study would require the efforts of epidemiologists and probably a government agency, and we will look at that prospect in future columns.

First, though, it is worth summarizing what our initial inquiries have suggested:

— With the Amish population in the United States approaching 100,000, there should be several hundred identifiably autistic Amish.

— We so far have located fewer than 10.

— There no doubt could be more, but a number of people in positions to know — doctors, health workers, an Amish-Mennonite mother of an adopted autistic child — say they have observed the prevalence is indeed low.

— A low prevalence could indicate the Amish have avoided some factor that is triggering autism in the rest of the population.

If autism is not nearly so common among the Amish, one or more of several factors could be at work:

— Their isolated gene pool could be protecting them in some unrecognized way.

— Something affecting the rest of the population is not affecting them. Candidates could include vaccines — the Amish have a religious exemption from the mandatory U.S. immunization schedule and only a small minority vaccinates its children; environmental pollutants; something in the food chain that the Amish avoid or some wildcard factor not yet on the table.

It is well-known the Amish are isolated from modern life — they do not drive, watch TV or use telephones, for example, but in other ways, we found, their isolation can be overstated.

They do see doctors, though not at the drop of a broad-brim hat. One of the most compelling bits of data comes from a family doctor in Lancaster County, Pa., who told us he has seen thousands of Amish for nearly a quarter-century but has never seen autism.

Like many health-conscious Americans, the Amish also use lots of nutritional supplements, we learned. In the last column we talked with Dick Warner, who is in the water-purification and natural-health business and has worked with thousands of Amish around the country. He also said he has seen no autism.

“I think a lot of it has to do with the health of the birthing mothers,” Warner said. “The Amish traditionally take a lot of supplements, especially when they are pregnant.”

An Amish dining table typically will have a Lazy Susan in the middle, from which everyone takes supplements, he said.

“Also, it’s the kind of diet that they have,” Warner added. “They don’t buy store-bought meat,” and it is not the center of the meal. Their farm-raised animals are not vaccinated or given growth hormones, he added. “I think there’s something there — they don’t ingest the environmental toxins that are in our food chain.”

Though he has seen no autism, Warner said he has observed some learning disabilities among the Amish, “but they were correctibles.” In those cases, he said, the children tested high for heavy metal in their system, especially mercury. They improved dramatically through a process called chelation, he added.

Chelation uses oral medication or creams spread on the body to remove metals. Coincidentally or not, some parents of autistic children champion chelation as having improved and in some cases reversed autism — although such results have not been scientifically validated.

“I’ve found that metal poisoning has a lot to do with attention-deficit problems not just amongst the Amish but amongst our own people, too,” Warner said. “You’ve got to chelate the minerals out of them.”

That converges with the view of a Virginia doctor we spoke with who said he was treating six Amish children with autism; four of the six had very high levels of mercury, he said.

The child with whom he tried chelation has improved, he said. He blamed the mercury exposure on coal-fired plants near their homes.

If anything has emerged from this excursion into the Amish world, it is how often the metals-mercury issue has arisen; two of the first three cases we identified were attributed by the Amish-Mennonite mother to vaccine reactions. A minority of doctors and parents blames a mercury preservative in vaccines called thimerosal for triggering an autism epidemic. The mainstream medical community says that has been discredited; thimerosal was phased out of U.S. childhood vaccines starting in 1999.

Warner seemed to sum up the alternative view when he said, “Mercury is a bad, bad guy.”

In the next column we will post some reader comments on the Amish-autism angle. Some have found it intriguing, while others say it is irritatingly irrelevant.

By DAN OLMSTED, United Press International   |   July 5, 2005 at 3:38 PM

Lawyers, it is said, never ask a question to which they do not already know the answer. This column has adopted the opposite tack, asking questions to which nobody knows the answer.

Where are the autistic Amish? That was one such question, and it led to our tentative conclusion autism seems surprisingly rare in this isolated group.

What could that mean? In our next question, we speculated the Amish might not be exposed to some factor that contributes to a higher autism rate in the rest of the population.

Some readers objected to this approach as hopelessly unscientific and anecdotal and doubtless subject to its own biases. We agree, but we also think somebody must start somewhere and see where things go.

Notably, in response to the Amish articles, a top government official last month told parents he is considering whether to launch a study of the autism rate among the Amish or other unvaccinated populations. (Some parents think a mercury-based preservative in vaccinations triggered their children’s autism.)

The last Age of Autism column started with another such question: Where are the autistic children from families who homeschool and choose not to vaccinate? We quoted a doctor in Florida who treats autistic children, has an autistic son, and has homeschooled his daughter.

“It’s largely nonexistent,” Dr. Jeff Bradstreet said. “It’s an extremely rare event.” He said he had tried to get epidemiologists to do a scientific study, but they doubted the results would apply to a broader population. (We heard the same thing about the Amish — until the government health official expressed interest.)

Among the 2 million children homeschooled in the United States, we deduced that the population of unvaccinated kids could easily surpass 4 percent, equal to the upper range of exemptions in some public school districts. That would mean tens of thousands of homeschoolers are likely unvaccinated, and a minimum of several hundred would be autistic at the current rate of 1 in 166 children born in the United States.

In the past week, a number of people with information and insights have accepted our standing invitation and gotten in touch. Here is a sample:

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Until my son’s (autism) diagnosis last year at age 3, we were non-vaccinating homeschoolers. I know of another homeschooling mom who didn’t vaccinate: she refuses to admit her son is on the spectrum (he obviously is). In the homeschool group we were involved in: three boys were on the spectrum, high functioning. The parents refused to label their sons. This is why they homeschool. I do not know if these parents vaccinated, but I am almost certain they did not.

Using low DIAGNOSED autism rates among non-vaccinated homeschoolers to prove vaccines are dangerous (which I believe for certain kids, they are) is a flawed argument. There are autism spectrum disorders among non-vaccinated homeschoolers, but many of these parents don’t get an official diagnosis PRECISELY because they do not want to deal with the school districts (and after my experiences, I can see their point).

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Homeschooling and autism are not independent. I’m unlikely to homeschool my autistic son in algebra or Bible studies or Latin, because he can’t count or speak or understand English. If you check the number of autistic children enrolled in normal public school curricula, you’ll find they’re missing there too (at least the most severe autistics are). They’re all getting special ed from wherever seems best to get it, which isn’t normal public schooling, and isn’t homeschooling either.

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The question is not, is there some association between homeschooling or lack of immunization and low autism rates, but does public schooling cause (or exacerbate) autism? Public schools in the last 20 years have become far more intolerant of behaviors that are not in the center of the spectrum and public school employees are now predominantly neurotypical. Put 100 Amish kids in the public school system and the rate at which the public school will think they are autistic will be the same as their non-Amish kids.

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I am the mother of a 4-year-old high-functioning autistic son who is unvaccinated and I homeschool him. I live in Lane County, Ore. I have not found any other situations like mine, of an autistic child who is unvaccinated and homeschooled.

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This first round of feedback contains some interesting threads. One is that the same impulse that motivates parents to homeschool their children could also lead them to avoid an autism diagnosis. A second is that fewer autistic children are likely to be homeschooled in the first place.

Clearly, there are unvaccinated children with autism in families that homeschool — a point Dr. Bradstreet had stipulated, adding it would prove “an extremely rare event.”

He also told us, “Unless they were massively exposed to mercury through lots of amalgams (mercury dental fillings in the mother) and/or big-time fish eating, I’ve not had a single case.”

One such child’s mother “lived next to a volcano, had 27 amalgams and ate fish twice a day,” he said.

So it’s worth pointing out that in Lane County, Ore. — the home of the 4-year-old unvaccinated boy with autism — elevated mercury is a prominent issue. In April of last year the state updated a warning first made in 1997 “of increased levels of mercury in fish caught from Dorena Reservoir.” They said children six and under should eat no more than one four-ounce meal every two months and that women of child-bearing age should limit their intake to 8 ounces per month.

The statement attributes the mercury contamination to “natural volcanic rocks and minerals and geothermal activities in the upper drainage areas. The movement of mercury into waterways and the bioaccumulation of mercury in fish may be influenced by past mining practices in the watershed, but this subject is not well studied.”

Also interesting: Oregon has the highest reported autism rate in the country, and Eugene’s is even higher. Why? That is another question no one knows the answer to.

A recent study in Texas found an association between environmental exposure to mercury and autism rates in that state’s counties. A fascinating exception was one county where the autism rate was high, yet the level of mercury exposure from coal-fired power plants and incinerators was not. On closer inspection, that county turned out to have been the site of a large mercury mine.

So, we have gotten just a couple of responses from parents of homeschooled, unvaccinated children with autism, though we know tens of thousands of parents of autistic children are following this column. We hope to get more.

Hearing right off, however, about an unvaccinated child with autism living in an area with an inexplicably high autism rate and an issue with mercury is … intriguing.

It is particularly so because the same anecdotal association appeared in our Amish reports. We came across only a handful of Amish with autism, and in several cases they were in the minority of children who had received immunizations.

One doctor said he was treating six autistic Amish children who had not been vaccinated. He said four of them had very high levels of mercury in their bodies, which he attributed to environmental pollution. He believes that caused their autism, although most medical experts say there is no evidence of a link between mercury and autism, however the exposure might have occurred.

(The other homeschooling parent quoted above lived in both California and New York state, moving frequently, making it impossible by her own account to plot any correlation to geography.)

It cannot be overemphasized that intriguing information is not scientific data. But it makes this column all the more eager to hear from readers with anything to add to this topic — consider this an all-points bulletin. And it makes us hopeful that the government will indeed muster its resources to find out once and for all: Do unvaccinated groups have fewer autistic children? Is there any sign that environmental mercury is associated with the cases that are identified?

When you ask questions to which you do not know the answer, you never know what you will find.

By DAN OLMSTED   |   June 2, 2005 at 4:06 PM

WASHINGTON, June 2 (UPI) — Part 1 of 2. Recently, a man named Dick Warner got in touch with us. He has been following this column’s search for Amish people with autism and said he might have something to contribute.

Warner lives in Cochranton, Pa., but his business — water purification and natural health — takes him into Amish households around the nation.

“I’ve been working with Amish people since 1980,” he said. “Since early ’99 I have been in a high concentration of health work with the Amish. I just came back from a trip where I visited the 89th Amish community I’ve been invited to.

“So I’ve been in all the styles of Amish that there are. They invite me to sleep in their homes. They feed me. I pray with them. I know their traditions. I’m going to an Amish wedding tonight in southern Illinois and next Thursday I have another wedding.

“I have seen so much in an intimate way with the Amish, and boy, did it pique my interest when I looked at your research.”

That research has centered on the Amish to try to determine whether an isolated population in the United States has the same prevalence of autism as the “English,” as the Amish call the rest of us. The idea: Because Amish ways are so different — from what they eat to how they spend their time to the fact that most do not vaccinate their children — they might offer clues to autism.

That is, it is important to know whether their autism rate is notably different. So far, there is evidence of fewer than 10 Amish with autism; there should be several hundred if the disorder occurs among them at the same 166-1 prevalence as children born in the rest of the population. The Amish have big families, and they should also have autism.

The problem is the same thing that makes the Amish worth looking at makes them more difficult to reach. They don’t mingle with or marry into the wider population. They don’t have phones or cars.

Still, several people who should know have told me they see little or no autism — way less than you’d expect. One is an Amish-Mennonite woman from Lancaster County, Pa. She has an autistic daughter, but that child was adopted from China. She said she is aware of two more Amish children with autism; in one case, she said, the disorder was clearly associated with a vaccination given at 15 months. (Most medical experts dismiss a link between autism and vaccines, which contained a mercury-based preservative until a phase-out began in 1999.)

A family doctor in Lancaster who has treated thousands of Amish over a quarter-century said he has never seen an Amish person with autism. A pediatrician and geneticist in Virginia told me he was treating six Amish children with autism, none vaccinated. Four of the six had high levels of mercury that he believes came from coal-fired power plants, which emit mercury as a byproduct. He suspects that caused their autism.

My research among the Amish so far does not point a finger at any one cause, but if a much lower prevalence holds up under more scrutiny, it might suggest that something “environmental” — in the broad sense of coming from outside the body rather than from a solely genetic or metabolic disorder — could be the decisive trigger in a huge increase in autism cases.

Warner was offering an up-close glimpse. I asked him what he had observed.

“I’ve got to tell you, I have never seen an autistic Amish child — not one,” he said. “I would know it. I have a strong medical background. I know what autistic people are like. I have friends who have autistic children.”

Warner said he has seen Amish with learning disabilities and mental illness and even helped two families get treatment for someone with schizophrenia.

I asked Warner how many Amish people he has met. “Tens of thousands,” he said, though he acknowledged the total is “not even 60 percent” of the national Amish population, which is approaching 100,000.

Those who think the Amish autism rate is not a good test case make two main arguments: They are there, just not visible. Or, they are not there, but some genetic difference is protecting them from autism.

The genetic issue is beyond our ken — although you would think if government health authorities considered it plausible, they would be doing urgent, well-publicized research. People like Warner make it harder to accept the first argument, that hundreds of autistic Amish are some kind of “hidden horde.”

“They’re so intimate with me, you couldn’t imagine,” Warner said. “They’re talking about their bowels, their periods, their sex life. They trust me just like I’m a confidant, and I am.”

Autism, he said, is not something they could or would hide from him. He invited me to come with him and meet Amish elders around the country and said he could provide entree into their world. Perhaps the Centers for Disease Control and Prevention would be interested in taking him up on that.

In the second part of this interview, we’ll hear Warner’s observations about how the Amish differ from the rest of us — and how they don’t.

By DAN OLMSTED   |   May 26, 2005 at 4:55 PM

WASHINGTON, May 26 (UPI) — Finally. I found a place that could tell me all about Amish people with autism.

“I talked to the people who work with the Amish program specifically, because they have more familiarity with the Amish families, and they said, oh yeah, definitely, they have seen autism in Amish families,” said Gloria Holub, a staff member at Oaklawn Psychiatric Center in Goshen, Ind. The center treats people with mental health problems, including autism.

“We started our Amish program four or five years ago. We’ve always had some Amish patients but they were just integrated into the regular treatment program,” she told me. But they were “uncomfortable in a unit with television on in a therapy group with ‘English’” as the Amish call the rest of us.

Working with Amish bishops in the area around Goshen, Oaklawn helped create a first-of-its-kind residential facility that uses the center’s therapists. It does “quite a large business,” Holub said, and draws Amish from all over including Pennsylvania and Ohio, the two largest populations. One therapy group speaks only Pennsylvania Dutch.

So far in my search for autism among the Amish, I’d found three or possibly four cases in Lancaster County, Pa. In addition, a pediatrician in Virginia Beach, Va., told me he was treating six — three from Pennsylvania, two from Ohio and one from Texas. With a population approaching 100,000 nationwide, and a national autism rate of 1 in 166 children, there should be several hundred more.

They seem few and far between, however, and people who should know — an Amish-Mennonite mother with an autistic daughter adopted from China, a pediatric hospital nurse in Pennsylvania Dutch country, a doctor who has treated thousands of Amish for nearly 25 years — told me they were struck by the seeming low prevalence. Intriguingly, four of the Virginia doctor’s cases and at least two of those in Lancaster County share a possible link to mercury, the two in Lancaster by way of vaccinations and the others through what the doctor said were very high mercury levels.

Few Amish vaccinate their children, which is what led me to explore their world in the first place. Some parents of autistic children and a small minority of doctors and scientists assert that mercury in vaccines and the environment triggered a sharp rise in autism cases in the 1990s. Most mainstream experts and public health officials reject that theory as totally discredited. Thimerosal, the mercury-based vaccine preservative, was phased out in the United States beginning in 1999.

Finding the autism rate in an unvaccinated population might help settle the issue, and it was a logical progression in the series I’ve been doing about the natural history of the disorder. The first surprise was that no one seems to have looked.

Just because autistic Amish are hard to find doesn’t mean they aren’t there, of course, especially given the insular nature of the Amish community. A number of readers have reminded me of that fact. Some argue that the Amish might have a genetic immunity to the ailment.

Now, it seemed, I had come to the right place to get some answers.

“I asked the two people who work with that program and they both definitely have seen autism in the Amish community in kids,” Holub told me. I asked her if I could talk to one of the therapists, and she put a friendly man named Dale Raber on the phone.

“I’ve been trying to find out whether there is autism in the Amish community,” I explained, “and I haven’t found much of it, and I understand you’re aware of some folks in the Amish community with autism?”

“We have a specific Amish program more with adults with schizophrenia, bipolar, depression, some of the more typical mental health issues, but, there are a number of, I mean I don’t have a number of them here that I have personal experience with, but I think there are a number of cases of autism among the Amish.”

“You’re familiar with, like, actual specific cases?” I asked.

“I haven’t, I’ve had one actual client here who was diagnosed with Asperger’s, which is in the autism family,” Raber said. “And that person wasn’t actually Amish — our Amish program also serves what you would call ‘horse-and-buggy Mennonites.’

“I would think there would have to be autism among the Amish, just because it’s among the rest of the population,” Raber said. He added that because autistic kids tend to have problems once they get to school, they might end up using developmental disability agencies as opposed to a mental health center like Oaklawn.

“So that would be my guess why we don’t see a lot of it. I would think that it probably happens among the Amish. I don’t have any evidence to back this up, but I would guess it’s about the same it is in the general population.”

Raber remarked that the Asperger’s case was surprising to see among the horse-and-buggy Mennonites — that he was more familiar with it as a “West Coast” phenomenon. Several national stories have highlighted the rate of Asperger’s Disorder in California, particularly in the high-tech Silicon Valley south of San Francisco.

I told Raber that I was trying to test the idea that the Amish, due to a low rate of vaccination or low exposure to some other possible culprit, might hold clues to autism.

“Ohhhh…..,” he responded, sounding surprised and intrigued. I asked if the horse-and-buggy Mennonites vaccinated their children. He consulted with a colleague in the office at the time and decided they probably did.

You can see why people conclude there are about the right number of Amish with autism — there should be, and it’s certainly everywhere else. You see lots of Amish, and you see lots of people with autism, and you put them together. Even the doctor in Lancaster County never thought about it till I asked him, and he has seen thousands of Amish patients over 25 years — not one, he suddenly realized, with autism.

Looking for them is starting to seem like watching smoke from a roadside brushfire drift slowly out of sight.

By DAN OLMSTED   |   May 24, 2005 at 4:28 PM

WASHINGTON, May 24 (UPI) — Parents of autistic children Tuesday launched an organization called Generation Rescue based on their conviction that flushing mercury out of children’s bodies improves and in some instances reverses autism.

“For parents who are on their backs with a foot on their neck trying to keep their lives together, we want to help them get to the truth as quickly as possible to help their kids. That is the single reason Generation Rescue exists,” said co-founder J.B. Handley of San Francisco, father of a three-year-old, Jamison, who he says has been transformed by chelation (key-LAY-shun) therapy.

The technique involves using doctor-supervised pills or creams that induce excretion of mercury and other toxic metals. While chelation has been used for 40 years as a treatment for lead and other heavy metal poisoning, its impact on autism is unproven and highly controversial.

More controversial than the process, however, is what its adherents say it shows about the cause of autism.

“Through our own research and initiative we have discovered a truth that we feel every parent should know,” states the group’s Web site, generationrescue.org, which Handley said is funded exclusively by parent donations.

“Autism, Asperger’s, ADD, ADHD … other learning disabilities, and many auto-immune disorders including asthma, juvenile onset diabetes, and anaphylactic food allergies are all caused by and symptoms of mercury poisoning primarily induced by a vaccine preservative called thimerosal.”

Thimerosal was used in an increasing number of childhood vaccines from 1931 through 1999, when the federal government recommended phasing it out. The increase in thimerosal follows the same curve as the rise in Autism Spectrum Disorders, which now affect 1 in every 166 U.S. children, according to the Centers for Disease Control and Prevention.

Chelation proceeds on the assumption that because mercury is the problem, getting it out is a big part of the solution.

“The most dramatic effect is the two-way conversation and natural childlike play,” Karen Beauvais of Atlanta told United Press International, speaking about her five-year-old son Josh after he underwent chelation. “Only the Mom of a once-silent autistic child could fully appreciate that. It is so nice to hear our little chatterbox talk now.”

She said Josh had intestinal problems with an oral chelation compound but has made huge gains with a cream that “brings the chelator through the skin much like hormonal creams. It’s great stuff.”

“Many parents could benefit from chelation detox if it were mainstream treatment. Funny — if your child is suffering from lead poisoning they are immediately chelated. But very few autistic children are even offered the option.”

A thimerosal-autism link has been flatly rejected by most of the mainstream medical establishment, citing epidemiological studies. A year ago, the prestigious Institute of Medicine not only dismissed the idea but said it was so discredited that research money should go to more “promising” areas. While the IOM says overwhelming evidence shows no link between autism and thimerosal, the director of the CDC, Dr. Julie Gerberding, has told Congress she is keeping “an open mind” about that.

More recently, some clinical studies have suggested a link between autism and mercury. One study in rats found that a genetically susceptible strain developed autistic-like behavior when given thimerosal at a level proportional to childhood vaccines; another reported that many autistic children are low in glutathione, a key anti-oxidant for removing heavy metals from the body; and a Texas study found an association between higher levels of autism and higher exposure to environmental mercury.

Generation Rescue’s Handley said his son received thimerosal-containing flu shots — which are still being given to children despite the phase-out of thimerosal-containing childhood vaccines that began in 1999 — and may have received other exposures because such vaccines were not immediately pulled from the market.

Handley said his son’s improvement in the eight months since they began chelation — with another 10 months planned — is “two different worlds. He’s gone from being on Pluto, meaning no recognition of his parents’ arrival, departure or presence, to being extraordinarily aware of our comings and goings. His eye contact has gone up 1000-fold.”

Hundreds of parents are volunteering to serve as “rescue angels” to help families learn about chelation therapy, Handley said; their contacts are listed on the Web site. “They all feel as passionately as my wife and I that parents need to know their kids can get better,” Handley said. “We’re tired of reading that this is a no-known-cause, no-cure disorder. That’s simply an untrue statement.”

In probable order of impact, the group asserts, the autism epidemic has been caused by:

–Thimerosal from vaccines;

–“synergistic toxins” that aggravate mercury’s effects including antibiotics, aluminum from vaccines, and the body’s own testosterone, which the group says explains why 80 to 90 percent of children with autism are boys;

–the mother’s mercury load while pregnant, including mercury-containing vaccines such as the flu shot and RHO-gam given to RH-negative women; dental mercury amalgams; thimerosal-containing vaccines received prior to pregnancy; and fish consumption before, during and after pregnancy;

–the child’s own dental mercury amalgams;

–the child’s high seafood consumption;

–environmental mercury that is a byproduct of coal-fired industrial plants, and

–other sources including consumer products that contain mercury.

Some of the parents charge that the federal government and mainstream medicine, while skeptical of chelation and scornful of the theory behind it, have been strikingly uninterested in studying its effectiveness. That will be the subject of a future column.