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 The
Age of Autism: One in 15,000 Amish
Dan Olmsted, United Press International, June 8, 2005
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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 stitch work 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.
The Age of Autism: Amish Ways
Dan Olmsted, United Press International, June 7, 2005
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.
The Age of Autism: A Glimpse of the Amish
Dan Olmsted, United Press International, June 2, 2005
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.
The Age of Autism: Oaklawn
Dan Olmsted, United Press International, May 26, 2005
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,"
Holum 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.
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