The Washington Times
April 18, 2005
The Age of Autism: The Amish anomaly
By Dan Olmsted
UNITED PRESS INTERNATIONAL
Lancaster, PA, Apr. 18 (UPI) -- Part 1 of 2. Where are the autistic
Amish?
Here in Lancaster County, heart of Pennsylvania Dutch country, there
should be well over 100 with some form of the disorder.
I have come here to find them, but so far my mission has failed, and
the
very few I have identified raise some very interesting questions about
some widely held views on autism.
The mainstream scientific consensus says autism is a complex genetic
disorder, one that has been around for millennia at roughly the same
prevalence. That prevalence is now considered to be 1 in every 166
children born in the United States.
Applying that model to Lancaster County, there ought to be 130 Amish
men, women and children here with Autism Spectrum Disorder.
Well over 100, in rough terms.
Typically, half would harbor milder variants such as Asperger's
Disorder
or the catch-all Pervasive Development Disorder, Not Otherwise
Specified
-- PDD-NOS for short.
So let's drop those from our calculation, even though "mild" is a
relative term when it comes to autism.
That means upwards of 50 Amish people of all ages should be living in
Lancaster County with full-syndrome autism, the "classic autism" first
described in 1943 by child psychiatrist Leo Kanner at Johns Hopkins
University. The full-syndrome disorder is hard to miss, characterized
by
"markedly abnormal or impaired development in social interaction and
communication and a markedly restricted repertoire of activities and
interests," according to the Diagnostic and Statistical Manual of
Mental
Disorders.
Why bother looking for them among the Amish? Because they could hold
clues to the cause of autism.
The first half-dozen articles in this ongoing series on the roots and
rise of autism examined the initial studies and early accounts of the
disorder, first identified by Kanner among 11 U.S. children born
starting in 1931.
Kanner wrote that his 1938 encounter with a child from Mississippi,
identified as Donald T., "made me aware of a behavior pattern not
known
to me or anyone else theretofore." Kanner literally wrote the book on
"Child Psychiatry," published in 1934.
If Kanner was correct -- if autism was new and increasingly prevalent
--
something must have happened in the 1930s to trigger those first
autistic cases. Genetic disorders do not begin suddenly or increase
dramatically in prevalence in a short period of time.
That is why it is worth looking for autistic Amish -- to test
reasoning
against reality. Largely cut off for hundreds of years from American
culture and scientific progress, the Amish might have had less
exposure
to some new factor triggering autism in the rest of population.
Surprising, but no one seems to have looked.
Of course, the Amish world is insular by nature; finding a small
subset
of Amish is a challenge by definition. Many Amish, particularly Old
Order, ride horse-and-buggies, eschew electricity, do not attend
public
school, will not pose for pictures and do not chat casually with the
"English," as they warily call the non-Amish.
Still, some Amish today interact with the outside world in many ways.
Some drive, use phones, see doctors and send out Christmas cards with
family photos. They all still refer to themselves as "Plain," but the
definition of that word varies quite a bit.
So far, from sources inside and outside the Amish community, I have
identified three Amish residents of Lancaster County who apparently
have
full-syndrome autism, all of them children.
A local woman told me there is one classroom with about 30
"special-needs"
Amish children. In that classroom, there is one autistic Amish child.
Another autistic Amish child does not go to school.
The third is that woman's pre-school-age daughter.
If there were more, she said, she would know it.
What I learned about those children is the subject of the next column.
This ongoing series aims to be interactive with readers and will take
note of comment, criticism and suggestions. E-mail:
dolmsted@upi.com
****************************************************
http://washingtontimes.com/upi-breaking/20050417-052541-5549r.htm
The Washington Times
UPI
April 19, 2005 Tuesday 9:41 AM EST
The Age of Autism: Julia
DAN OLMSTED
LEOLA, Pa., Part 2 of 2. Three-year old Julia is napping when I arrive
at
the spare, neat, cheerful house on Musser School Road near the town of
Leola
in Lancaster County.
She is the reason I have driven through the budding countryside on
this
perfect spring day, but I really do not need to meet her.
In the last column, I wrote about trying to find autistic Amish people
here
in the heart of Pennsylvania Dutch country, and noted there should be
dozens
of them -- if autism occurs at the same prevalence as the rest of the
United
States.
So far, there is evidence of only three, all of them children, the
oldest
age 9 or 10. Julia is one of them. I found out about her through a
pediatrician in Richmond, Va., Dr. Mary Megson. I had been asking
around for
quite some time about autism and the Amish, and she provided the first
direct link.
Megson said she would give my name to this child's mother, who could
call if
she chose. A few days later the phone rang. It was Stacey-jean Inion,
an
Amish-Mennonite woman. She, her husband Brent and their four children
live
simply, but they do drive a vehicle and have a telephone. After a few
pleasantries, I told her about my trying to find autistic Amish.
Here is what she said, verbatim:
"Unfortunately our autistic daughter -- who's doing very well, she's
been
diagnosed with very, very severe autism -- is adopted from China, and
so she
would have had all her vaccines in China before we got her, and then
she had
most of her vaccines given to her in the United States before we got
her.
"So we're probably not the pure case you're looking for."
Maybe not, but it was stunning that Julia Inion, the first autistic
Amish
person I could find, turned out to be adopted -- from another country,
no
less. It also was surprising that Stacey-jean launched unbidden into
vaccines, because the Amish have a religious exemption from
vaccination and
presumably would not have given it much thought.
She said a minority of Amish families do, in fact, vaccinate their
children
these days, partly at the urging of public health officials.
"Almost every Amish family I know has had somebody from the health
department knock on our door and try to convince us to get vaccines
for our
children," she said. "The younger Amish more and more are getting
vaccines.
It's a minority of children who vaccinate, but that is changing now."
Did she know of any other autistic Amish? Two more children, she said.
"One of them, we're very certain it was a vaccine reaction, even
though the
government would not agree with that."
Federal health officials have said there is no association between
vaccinations and autism or learning disabilities.
"The other one I'm not sure if this child was vaccinated or not," she
added.
During my visit to their home, I asked Stacey-jean to explain why she
attributed the first case to vaccines.
"There's one family that we know, their daughter had a vaccine
reaction and
is now autistic. She was walking and functioning and a happy bright
child,
and 24 hours after she had her vaccine, her legs went limp and she had
a
typical high-pitched scream. They called the doctor and the doctor
said it
was fine -- a lot of high-pitched screaming goes along with it.
"She completely quit speaking," Stacey-jean said. "She completely quit
making eye contact with people. She went in her own world."
This happened, Stacey-jean said, at "something like 15 months." The
child is
now about 8.
For similar reasons, Julia Inion's Chinese background is intriguing.
China,
India and Indonesia are among countries moving quickly to
mass-vaccination
programs. In some vaccines, they use a mercury-based preservative
called
thimerosal that keeps multiple-dose vials from becoming contaminated
by
repeated needle sticks.
Thimerosal was phased out of U.S. vaccines starting in 1999, after
health
officials became concerned about the amount of mercury infants and
children
were receiving. The officials said they simply were erring on the side
of
caution, and that all evidence favors rejection of any link between
Autism
Spectrum Disorders and thimerosal, or vaccines themselves.
Julia's vaccinations in China -- all given in one day at about age 15
months
-- may well have contained thimerosal; the United States had stopped
using
it by the time she was born, but other countries with millions to
vaccinate
had not.
Stacey-jean said photographs of Julia taken in China before she was
vaccinated showed a smiling alert child looking squarely at the
camera. Her
original adoptive family in the United States, overwhelmed trying to
cope
with an autistic child, gave Julia up for re-adoption. The Inions took
her
in knowing her diagnosis of severe autism.
I tried hard -- and am still trying -- to find people who know about
other
autistic Amish. Of the local health and social service agency
personnel in
Lancaster, some said they dealt with Amish people with disabilities,
such as
mental retardation, but none recalled seeing an autistic Amish.
Still, I could be trapped in a feedback loop: The Amish I am likeliest
to
know about -- because they have the most contact with the outside
world --
also are likeliest to adopt a special-needs child such as Julia from
outside
the community, and likeliest to have their children vaccinated.
Another qualifier: The Inions are converts to the Amish-Mennonite
religion
(Brent is an Asian-American). They simply might not know about any
number of
autistic Amish sheltered quietly with their families for decades.
It also is possible the isolated Amish gene pool might confer some
kind of
immunity to autism -- which might be a useful topic for research.
Whatever the case, Stacey-jean thinks the autistic Amish are nowhere
to be
found.
"It is so much more rare among our people," she said. "My husband just
said
last week that so far we've never met a family that lives a healthy
lifestyle and does not vaccinate their children that has an autistic
child.
We haven't come across one yet."
"Everywhere I go (outside the Amish community) I find children who are
autistic, just because I have an autistic daughter -- in the grocery
store,
in the park, wherever I go. In the Amish community, I simply don't
find
that."
UPI researcher Kyle Pearson contributed to this article.