April 21, 2005

The Autistic Amish - Or Lack There Of

The Age of Autism: Julia
By Dan Olmsted
Leola, PA, Apr. 19 (UPI) -- 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."

April 19, 2005

A Beautiful Thing

A great way to help an autistic student and build a bunch of compassionate adults.

Fellow students pave the way for autistic classmate
Sandy Cullen Wisconsin State Journal

Twelve-year-old Garner Moss is fascinated with maps and has an uncanny knack for remembering geographic locations.

He also loves buses and can hear one eight blocks away, said Brent Lodewyk, his teacher at Stephens Elementary.

That's why Lodewyk had to move his combined fourth- and fifth-grade class from the street side of the school to the back.

Garner, who has autism, would jump out of his seat and stand at the window, excitedly announcing, "The bus is coming!"

Moving Garner's classroom is just one of the things that makes it easier for him to be in a regular classroom. At times he wears headphones to listen to music so he's not as distracted by other things that are happening around him.

In addition to his classroom teacher and special education teacher Kara Meyers, he gets lots of support from his classmates, who formed the group A Helping Hand For Autism to help other students understand more about the neurological disability that can affect how a person sees, hears, feels and communicates - and about Garner.

"It's really created by kids, run by kids," Lodewyk said.

The fourth- and fifth-graders in AHHFA - pronounced "ah- fa" - have put together a presentation they are taking to other classes at Stephens this month, which is Autism Awareness Month.

They also will be making a DVD to introduce Garner and explain his autism to the new classmates he will encounter next year at Jefferson Middle School.

As part of their presentation, group members are asking students to decorate a drawing of a hand and hang it up outside of their classroom as a show of support.

Their presentation also includes a poster board with photographs of Garner enjoying swimming, hiking and horseback riding.

"Just because a person has autism doesn't mean that they can't do all that stuff," said fifth-grader Lexus James, 11.

In fact, the group's young members can tell you, Mozart, Thomas Jefferson and Albert Einstein had some degree of autism.

Their display uses puzzle pieces to represent the mystery of autism - for which there is no known cause or cure - along with bright colors that represent hope.

Next year, they hope to do presentations at other schools, such as Jefferson and Spring Harbor Middle School.

AHHFA members, who have their own bright green T-shirts, meet once a week over lunch with Garner's mom, Beth Moss, who helps the students plan activities.

She hopes that being in a regular classroom will enable Garner to function independently in the real world, where perhaps he could get a job mapping bus routes.

That's why Garner's family moved from Tennessee to Madison, which has a reputation for successful inclusion of students with special education needs in regular classes.

Students with special needs are segregated only when it benefits the student, or to address behavior or safety concerns, and only for as long as necessary, said Jan Duxstad, a special education coordinator for the district.

Not only did Moss choose Madison, she selected Stephens Elementary after speaking with Principal Nancy Yoder.

At Stephens, Garner is one of 12 students with autism, or 3 percent of the school's students, Meyers said, adding that other schools in the district, as well as nationally, typically have 1 percent of students with the disorder.

In the district, 328 students have some form of autism, spokesman Ken Syke said.

Lodewyk, who has been Garner's classroom teacher for two years, said AHHFA has made a big difference in Garner's confidence and personal growth.

"They're really teachers," Lodewyk said of the group's members. "He's very supported by his friends."

"People were teasing our friend, Garner, and I wanted to help stop that," said fifth- grader Azucena Wisch, 11.

"They were telling him to hug other people and telling him to say stuff to other people because they thought it was funny," Wisch said, adding, "He'd be the one to get in trouble."

"When I didn't know him, I admit I teased him a bit," said fifth-grader Robert Quintana. "I wanted to start being his friend to help him out."

AHHFA members who are going on to Jefferson say they will continue to look out for Garner at their new school.

Garner said he likes having a group of supporters to lend him a helping hand.

"I have more friends with AHHFA," said Garner, who isn't worried about having to go to a new school next year. "I'm excited."

Fifth-grader Camden Hirshfeld said, "Through AHHFA and our help of Garner, he has become a much better student and has got a lot of good friends, including me."

Contact Sandy Cullen at scullen@madison.com or 252-6137.

April 5, 2005

Antioxidant Levels May be Linked to Autism

Antioxidant Levels May be Linked to Autism
By Serena Gordon

SUNDAY, April 3 (HealthDay News) -- Could oxidative stress, a suspected contributor to many disease processes like heart disease and cancer, also play a role in autism?
University of Arkansas researchers think it may.

In a recent study, autistic children were found to have significantly lower levels of an antioxidant called glutathione and its metabolic precursors.

"Glutathione is the major antioxidant in cells important for detoxification and elimination of environmental toxins, and its active form is reduced in about 80 percent of the kids with autism," said the study's lead author, S. Jill James. She is director of the biochemical genetics laboratory at Arkansas Children's Hospital Research Institute and a professor of pediatrics at the College of Medicine at the University of Arkansas for Medical Sciences in Little Rock.
Reduced levels of antioxidants, such as glutathione, would increase the level of oxidative stress. Oxidative stress occurs when antioxidants aren't able to clear the body of free radicals, which can damage cells in the brain, gastrointestinal tract and immune system.

"[Our findings] suggest that these kids would be more sensitive to an environmental exposure and would be less likely to detox from heavy metals," said James.

Exposure to heavy metals, such as the mercury preservative that was commonly used in children's vaccines until recently, has long been suspected as a trigger for autism in genetically susceptible children. Most research, however, has failed to confirm this link, and in 2004, the Institute of Medicine issued a report stating that it did not believe that vaccines contributed to the development of autism.

Not everyone agreed with that conclusion, however. Laura Bono, chairwoman of the National Autism Association, and the parent of an autistic child, believes vaccines play some sort of role in the development of autism and said the new study's findings would seem to support a link.
"These are children that are more vulnerable, that don't quite detox the way the rest of us do," said Bono.

James didn't look at the vaccine question for the current study. She said that autism is believed to have a genetic basis, but that it "takes an environmental trigger to bring out the genetics."
For this study, James and her colleagues compared blood samples of 90 autistic children to those of 45 children without the disorder, and found that the active form of glutathione was reduced by about 80 percent in children with autism. James also said the metabolic precursors of glutathione were reduced.

"If they have lower glutathione, they would reach a toxicity earlier than someone with higher levels," said James. "But, it's not clear whether this is a cause or a consequence of autism," she added.

James and her team also looked at changes that occur in several genes that could affect glutathione metabolism in blood samples from 233 autistic children, vs. 183 children without autism. They found changes in three genes more often in the children with autism. James said these are common genes that don't cause autism, but they could contribute to the development of these metabolic abnormalities.