[PROVE] The Age of Autism: The Amish anomaly

[Guest guest]

[Dear PROVE Members,

A reporter went on to search for autistic Amish people, and what he found is

well worth reading and forwarding on to friends and family! The fact that I'm

sending this out on this email list ought to give you a hint! To get the full

effect from these articles, you need to read both of them. – DR]

The Age of Autism: The Amish anomaly

http://www.washtimes.com/upi-breaking/20050321-115921-9566r.htm

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 s 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 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@...

==================================================

The Age of Autism:

http://washingtontimes.com/upi-breaking/20050417-052541-5549r.htm

By Dan Olmsted

UNITED PRESS INTERNATIONAL

Leola, PA, Apr. 19 (UPI) -- Part 2 of 2. Three-year old 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. is one of them. I found out about her through a pediatrician in

Richmond, Va., Dr. 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 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, 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.

'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 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 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 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 Pearson contributed to this article.

--

This ongoing series on the roots and rise of autism aims to be interactive with

readers and welcomes comment, criticism and suggestions. E-mail:

dolmsted@...

-------------------------------------------------------------------

Dawn

PROVE(Parents Requesting Open Vaccine Education)

prove@... (email)

http://vaccineinfo.net/ (web site)

-------------------------------------------------------------------

PROVE provides information on vaccines, and immunization policies and practices

that affect the children and adults of Texas. Our mission is to prevent vaccine

injury and death and to promote and protect the right of every person to make

informed independent vaccination decisions for themselves and their family.

-------------------------------------------------------------------

This information is not to be construed as medical OR legal advice.

-------------------------------------------------------------------

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[Guest guest]

--- PROVE wrote:

> Subject: [PROVE] The Age of Autism: The Amish

> anomaly

>

> [Dear PROVE Members,

> A reporter went on to search for autistic Amish

> people, and what he found is well worth reading and

> forwarding on to friends and family! The fact that

> I'm sending this out on this email list ought to

> give you a hint! To get the full effect from these

> articles, you need to read both of them. – DR]

>

>

> The Age of Autism: The Amish anomaly

>

http://www.washtimes.com/upi-breaking/20050321-115921-9566r.htm

>

> 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 s 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 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@...

>

> ==================================================

> The Age of Autism:

>

http://washingtontimes.com/upi-breaking/20050417-052541-5549r.htm

>

> By Dan Olmsted

> UNITED PRESS INTERNATIONAL

>

> Leola, PA, Apr. 19 (UPI) -- Part 2 of 2. Three-year

> old 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. is one of

> them. I found out about her through a pediatrician

> in Richmond, Va., Dr. 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 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, 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.

>

> '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 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 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

> 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 Pearson contributed to this

> article.

>

> --

>

> This ongoing series on the roots and rise of autism

> aims to be interactive with readers and welcomes

> comment, criticism and suggestions. E-mail:

> dolmsted@...

>

>

>

-------------------------------------------------------------------

> Dawn

> PROVE(Parents Requesting Open Vaccine Education)

> prove@... (email)

> http://vaccineinfo.net/ (web site)

>

-------------------------------------------------------------------

> PROVE provides information on vaccines, and

> immunization policies and practices that affect the

> children and adults of Texas. Our mission is to

> prevent vaccine injury and death and to promote and

> protect the right of every person to make informed

> independent vaccination decisions for themselves and

> their family.

>

-------------------------------------------------------------------

> This information is not to be construed as medical

> OR legal advice.

>

-------------------------------------------------------------------

> Subscribe to PROVE Email Updates:

> http://vaccineinfo.net/subscribe.htm

> Tell a Friend about PROVE:

> http://vaccineinfo.net/subscribe/friends.shtml

>

-------------------------------------------------------------------

> Removal from PROVE Email Updates:

> Click here: http://vaccineinfo.net/unsubscribe.htm

> You are currently subscribed as fabricswap@...

> .

>

>

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>

>

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