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Monday, May 23, 2005

The Age of Autism: Goshen


WASHINGTON, May 23 (UPI) -- Our search for Amish people with autism is now departing Lancaster County, Pa., and heading for the Midwest, where a significant percentage of the nation's 80,000 Amish can be found.

Lancaster County -- home to 22,000 Amish and the heart of the Pennsylvania Dutch Country -- was our first stop. We found evidence of only three or four Amish children with Austism Spectrum Disorders in Lancaster County; there should be dozens based on the 1-in-166 prevalence among "the English," as the Amish call the rest of us. We're still looking in Lancaster, but widening the search at the same time.

Nationwide, there are 80,820 Old Order Amish according to the almanac. By the time you include Amish-Mennonites and allied believers that number easily passes 100,000, but we're staying on the conservative side in every sense to avoid inflating expectations.

Dividing those Old Order Amish by the autism rate yields nearly 500 nationwide who should have Autism Spectrum Disorders -- that is, if autism is primarily a genetic disorder that has always existed but is just now being better identified.

Let's cut that number in half, to represent only the full-syndrome autism cases that are impossible to miss and don't shade into any other diagnosis. And let's lower that number to an even 100, in case autism now affects children and adolescents in much higher numbers than their elders -- in case it has become virtually epidemic among them, in other words. (Remember, the Amish have large families; 10 children is not rare and autism shouldn't be, either.)

Next stop: the Amish community around Goshen, Ind. According to the local Web site amishcountry.org, "While they may wait longer, or try alternative treatments, Amish families may use the services of doctors and modern hospitals when necessary."

So we called a medical practice we were referred to in Middlebury, heart of the Amish community in northern Indiana, and asked about Amish people with autism. The conversation with a staff member went exactly like this:

"There are no doctors here today. They're all in a meeting. I'll give them this message."


"You know, I've been here for five years and I don't think I've seen one autistic Amish come in here. ... "

"Would you have, do you think, if there were any? I mean, do you guys treat Amish folks?"

"Oh we do, yes, quite a few."

"So, that's kind of interesting, huh?"

"Yeah, but you know that doesn't mean that ... Yeah, that is, I never thought of that before. This is very interesting."

We seem to be starting off on the same foot in Goshen that we ended on in Lancaster, where the Amish do see doctors, but the doctors say they don't see autism.

"You'll find all the other stuff, but we don't find the autism," said a Lancaster doctor who has treated thousands of Amish for nearly 25 years. "We would have seen it. It's not something they would hide. They're not like that."

Calling doctors who treat Amish patients in the heart of Amish country is the sort of unscientific, anecdotal approach that drives the autism experts absolutely buggy, to use an irresistible word -- though not buggy enough to look for themselves, apparently. We're told that recently, parents of autistic children met at a fairly high level with congressional and White House representatives and mentioned the Amish issue.

"It's intriguing, but of course it's not a scientific study," a government official pointed out.

More on Goshen and the Amish in upcoming columns.

e-mail: dolmsted@upi.com

Copyright 2005 by United Press International. All Rights Reserved.

Posted by Becca

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