0
   

Amish and autism, good read..

 
 
OGIONIK
 
Reply Sun 20 Apr, 2008 06:45 pm
amish and autism

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.

PART 2: The Age of Autism: Julia

UNITED PRESS INTERNATIONAL

Leola, PA, Apr. 19 (UPI) -- 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.

(maybe it has to do with their not eating unhealth processed foods, soda, etc!!!)
  • Topic Stats
  • Top Replies
  • Link to this Topic
Type: Discussion • Score: 0 • Views: 6,864 • Replies: 64
No top replies

 
aidan
 
  1  
Reply Sun 20 Apr, 2008 07:02 pm
That's really interesting. I was thinking that the fact that the US had stopped using thimerasol but China and other Asian countries still did at the time of Julia's vaccinations wouldn't really have any bearing on the onset of autism because if it did, the incidence of autism in the US would have stabilized or dropped and instead it's risen in recent years.

It's interesting that autism seemed to have suddenly appeared in the thirties. I'm not a scientific historian by any means, and this is just a stab in the dark, but I was thinking that the twenties and thirties were around the time that electricity became commonly available and power was commonly available in peoples' homes. The Amish never participated in that and so weren't exposed to electrical currents that other people were.

The reason I thought of this is because someone else on this forum once posted something about a link between the onset of autism and exposure to television...I don't know if it makes sense- just something to think about.

But I do think that whatever triggers autism, there is a genetic predisposition and as the Amish have remained separate - maybe this has insulated their population from its occurrence.

Thanks for posting this.
0 Replies
 
Chai
 
  1  
Reply Sun 20 Apr, 2008 07:25 pm
bookmark
0 Replies
 
OGIONIK
 
  1  
Reply Sun 20 Apr, 2008 07:39 pm
i say its the food and water.

swear to god, chlorine and flouride in our WATER?

those are horrible poisons, how can you miss the big picture?

INGESTING POISONS ISNT GOOD, EVER!!!!!!! and all i have under my belt is highschool chemistry.

were all doomed
0 Replies
 
OGIONIK
 
  1  
Reply Sun 20 Apr, 2008 07:40 pm
or then again we could adapt and become even tougher after a few generations. maybe even immune to some things.
0 Replies
 
aidan
 
  1  
Reply Mon 21 Apr, 2008 05:23 am
We're actually not adapting very well - I was reading that this is the first generation of children who will have a lower life expectancy than their parents.

The whole food and water thing is an issue for sure. Any long-term exposure to any outside chemically based substance that's foreign to our physiological make-up is a worry to me.

I worry about flouride, I worry about these kids that start anti-depressants and ritalin at the ages of four and five and take them for twenty/thirty/forty years...and it's getting more and more common. The effect of caffeine as it's introduced now in childhood through soda consumption. We've already seen the results of the added sugar - I wonder if they've factored in the added caffein in terms of high blood pressure and heart disease.

When I was pregnant with my son, I had premature contractions so I had to take a drug called tributiline to stop the contractions so I could maintain my pregnancy to term. The first thing I asked was if it would have any long term effects on my child. It was a fairly new drug at the time and they didn't have any long term studies - but I knew what the effect would be on him if he were to be born four months early- so I took it. He went to terms and was fine and healthy. But in the course of my reading years later I read that tributiline was implicated in the occurrence of autism.

Luckily for me - my son isn't autistic...but I don't have any genetic predisposition or family history of autism. I wonder if it'd have been different if I had.

Sometimes it all seems like a big crapshoot.
0 Replies
 
Chai
 
  1  
Reply Mon 21 Apr, 2008 05:40 am
If the next generation does not live as long as their parents, the overall reason is not fluoride.

It's the greatly increased obesity rate, and lack of exercise.

The rate of childhood diabetes has increase tremendously.

Obesity also equals high blood pressure, high cholesterol, heart disease, kidney failure, and plenty of other diseases.
0 Replies
 
shewolfnm
 
  1  
Reply Mon 21 Apr, 2008 05:56 am
With all of the abnormal things we ingest on a daily basis in our society, it is truly a wonder we live as long as we do NOW.
Of course, with out modern western medicine, we would all be doomed to death by age 30.

If I remember correctly ( this is coming from my memories of nursing classes in college.. gosh.. over 10 years ago..)

The amount of organ transplants that are happening daily, and the amount that are NEEDED are skyrocketing at something like ten thousand a month..
And that amount is up over 40 from what it was 20-30 years ago.

Our needs for our medicine is almost 100% due to chemicals that are in almost everything we eat.

One example I found interesting was the use of things like Tide.
You know that can NOT be completely removed from our water system?
And that everytime you use that in your washer , to 'clean your clothes' , you are adding to the amount we DRINK straight from the tap?
The same with dish soap
Scouring powder that is used to 'clean your tub'
Toilet cleaner
Fabric softner
Floor soaps
Window cleaner..


every single chemical you can rinse down the drain can NOT be completely cleaned out of our water system.
So with just that bit alone, we are ingesting TRULY unnatural things that are contributing to everything from premature rot in our teeth, to kidney stones, infections, bone density loss, alzheimers, immune deficiency, cancers, obesity..


we. are. killing. ourselves. And buying these killing chemicals because we think they are 'necessary'.
Sorry.. you can use baking soda on your scrub brush in your toilet and get it just as clean, and not add yellow die number... what ever it is.. that has been directly linked to cancer.

But this is a soap box I will stand on for hours.
To me, it is embarassing the way our society has 'progressed'.
The very thing that makes us an advanced society ( technology) is what is killing us at an alarming rate. Yet no one seems to see it, or care about it. Heaven forbid they have to use something other then Tide for that " fresh scent" Rolling Eyes

I feel sorry for this next generation.
Their bodies are going to suffer from our negligence.. and if we do not teach them what to do, they will kill the NEXT generation even faster by continuing our habits.

I never did understand the person who really thinks this kind of stuff is not important, isnt real, or worth DOING something about.




gosh.. I sound like a crotchety old bitch dont i..
0 Replies
 
farmerman
 
  1  
Reply Mon 21 Apr, 2008 06:00 am
AMish diets arent any better than those of the "English" They eat all the same prepared convenience dishes.
There are hundreds of new "Amish Walmarts" built and run by the AMish themselves . These are general stores that the AMish use exclusively so they dont have to travel far to shop (and thus pay for Amish taxi transportation which runs about 1.25 a mile at present). These stores burgeoned in the 80's and they are about 5 miles apart. The proprietor is usually another AMish farmer whose family works the store from 8 to 5 . The only difference between an AMish gen store and an ACME market , is the Acme will sell tvs and some electric appliances , while the AMish stores sell hand appliances and many dry goods in bulk (These families will buy sugar in 50 lb sacks and theyll buy 2 at a time).
They buy all the same frozen foods and canned goods, cereals , twinkies etc. (AMISH love sugary products)

Ive never seen an AMish kid with autism and I asked my fishin buddy;s wife who is a midwife near Quarryville. Shes not seen the symptoms in kid followups .
What we do see are a number of congenital diseases that are almost unique to th AMish.
0 Replies
 
Chai
 
  1  
Reply Mon 21 Apr, 2008 06:11 am
farmerman

I don't know any amish, or seen their stores. But, you got that right that people who grow up on a working farm don't eat right.

In my mid 20's I had a roommate who grew up on a farm in Illinois, I remember thinking "Wow, great, she'll be buying all good vegetables and fruits and stuff"

Wrong.

I don't remember her eating so much "junk" food, but, when she prepared food based on what she ate growing up, it was horrible, nutrition wise.

Since then, I've met others from that kind of environment, and they don't win any awards either.
0 Replies
 
farmerman
 
  1  
Reply Mon 21 Apr, 2008 06:38 am
Sugar is the main condiment in an AMish kitchen.
They m ake a homemade ketchup that you could pour over your pancakes.
0 Replies
 
sozobe
 
  1  
Reply Mon 21 Apr, 2008 06:49 am
I have a book of Wisconsin farm cooking that makes your arteries scream if you just look at it. Sugar, lard, sugar, lard, and then lard lard lard.


The article's statistics seem a little off to me but I don't know a lot about stats. Wouldn't the numbers seem to be much higher for it to be significant that there are relatively few kids with autism? The number isn't zero.

1 in 166 or whatever isn't supposed to be taken too literally -- if you have a group of 166 kids and none of them have autism, that's not automatically a big deal. I think (but am not sure) that the numbers would have to be way higher for it to be statistically significant. (I.e. if it's truly random, and not caused by environmental factors or diet or exposure to video games or whatever, there would randomly be pockets of high incidence and randomly pockets of low incidence.)
0 Replies
 
JPB
 
  1  
Reply Mon 21 Apr, 2008 07:08 am
The problem with anecdotal evidence is that there isn't any control data or actual test data. The author claims that with the national prevalence of ASD of 1:166 there should be 130 cases of ASD in Lancaster county. This is simple math -- The Amish population in Lancaster County (approx 22,000) times the national prevalence equals an expected observed rate of 130 cases.

In order to determine significance you would need to have actual data of the prevalence in the amish community. Observing that no one knows of any cases doesn't mean that there aren't any cases. However, observations such as these are valuable for designing valid study criteria (if you can get the community to participate).
0 Replies
 
sozobe
 
  1  
Reply Mon 21 Apr, 2008 07:11 am
I smiled when I saw JPB had replied here -- now that's someone who knows her statistics!
0 Replies
 
JPB
 
  1  
Reply Mon 21 Apr, 2008 07:26 am
Ok -- some real numbers Very Happy

The national prevalence of 1:166 indicates a population proportion of 0.006 or 0.6%. In order to claim statistical significance you would need a properly randomized sample of 600 amish with an observed rate of zero 0.0% (95%CI 0.0% - 0.6%). In other words, 0/600 is statistically different at 95% confidence than 1/166.
0 Replies
 
ThroughTheLookingGlass
 
  1  
Reply Mon 21 Apr, 2008 12:04 pm
If you look at the autism statistic by themselves, it appears that there is more autism now. However, if you look at autism stats in conjunction with other developmental disorders, particularly retardation, you will see cases of retardation decreasing in about the same numbers. It appears to be a diagnostic shift rather than the appearance of new cases. Additionally, only very severe and destructive behavioral issues used to result in a diagnosis of autism. Now simple odd, but non-destructive behavior results in an autism diagnosis. In the US, autism diagnosis have tracked closely with monetary services - after the money was available, there were more autism diagnosis. It seems that in many instances, excluding severe cases, we may be too quick to label a difficult or odd child as autistic. It is probably a good idea to be suspect of any diagnosis based solely on behavior with no genetic or chemical backup, particularly when these labels can have adverse effects on the rest of the child's life.
0 Replies
 
High Seas
 
  1  
Reply Mon 21 Apr, 2008 12:43 pm
ThroughTheLookingGlass wrote:
If you look at the autism statistic by themselves, it appears that there is more autism now. However, if you look at autism stats in conjunction with other developmental disorders, particularly retardation, you will see cases of retardation decreasing in about the same numbers. It appears to be a diagnostic shift rather than the appearance of new cases. ..........


Actuarially speaking there are no "new" diseases. Nobody in risk management believes in the existence of any of those "suddenly discovered" psychobabble "illnesses".

Retardation, yes, it's been around forever, but "autism", "ADD", "ADHD" and the like are inventions by pseudo-medics. Some of them really believe what they say, the others are in it for the money.

Worse than the medics, even, are the "minders", including teachers, who would rather apply the time-tested Soviet gulag forcible administration of psycho-drugs than put up with difficult children.

All those Soviet psychiatric asylum inmates got miraculously "cured" after the communist collapse - obviously a triumph of Russian medicine!

Diagnostic monstrosities by pseudo-medics, in both cases.

The drugmakers are raking it in with the "new" drugs to "treat" all those "new" diseases, so they're not complaining. Insurance companies have plenty of mathematically trained actuaries, all of whom know what I just posted, but they're under pressure by politically correct regulators who can cause vast damage to the insurers' reserves and credit rating.

I guess the Amish don't go much for "health insurance", specially when it comes to "mental health parity" - that would explain their statistics <G>
0 Replies
 
Chai
 
  1  
Reply Mon 21 Apr, 2008 01:34 pm
So what would you call autism then high seas?

Just mental retardation? Obviously that's not true
0 Replies
 
High Seas
 
  1  
Reply Mon 21 Apr, 2008 01:44 pm
Chai - I'm a mathematician, not a medic. Even if I were a medical doctor I wouldn't presume to diagnose online.

If you read the Amish article at the start of this thread you'll see the "autistic" child was adopted in China.

The Chinese know very well factors contributing to mental retardation (for instance, illnesses afflicting the mother during pregnancy) and have long been suspected of dispatching those newborns to eager adoptive parents overseas - without, of course, any background information on the baby.

Whether this is the case here, of course, cannot be ascertained without actual checking of all pertinent facts - not likely to occur any time soon.
0 Replies
 
mismi
 
  1  
Reply Mon 21 Apr, 2008 02:19 pm
book mark -
?
0 Replies
 
 

Related Topics

 
  1. Forums
  2. » Amish and autism, good read..
Copyright © 2024 MadLab, LLC :: Terms of Service :: Privacy Policy :: Page generated in 0.07 seconds on 12/25/2024 at 02:52:10