Wednesday, April 20, 2005
Is There A Connection
The link between thimeresol, a mercury based preservative used in vaccines, and autism is subject to debate. Like many parents of autistic children, my autistic son's mom firmly believes that his autism was caused by his MMR vaccine. I remain a skeptic. However, when I read articles like the one below, my skepticism wanes.
For your consideration:
The Age of Autism: Julia
Part 2 of 2.
By Dan Olmsted. Weblink not available at press time.
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."
UPI researcher Kyle 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.
For your consideration:
The Age of Autism: Julia
Part 2 of 2.
By Dan Olmsted. Weblink not available at press time.
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."
UPI researcher Kyle 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.
Friday, April 15, 2005
Art and Autism
As some of you may know, I spent a month "behind the iron gates" almost a year ago working on the novel. As some of you may also know, my elder son is autistic. So, as is routine for parents with autistic children, I talked about it to Eileen. It seemed impossible not to do so, even when I felt like I was boring her to tears.
To my surprise, E has taken up the autism advocacy mantle with her unique flair. She has written a chap of poems that have are on one or more levels autism related. She has mentioned autism on her blog. And when I mentioned that there was an Art and Autism exhibit at a gallery in NYC, she marched to the gallery and sent me back a report.
Then she took it to the next level.
John Patrick McKenzie was one of the artists whose works were shown at the exhibit in NYC. I had not heard of him prior to E buying some of his works (some? Try half of his output for the last 5 years. E does not do things by halves, I think she bought his entire output.). Then, she wrote a marvelous essay which can be found here.
http://www.oovrag.com/essays/essay2005b-6b.shtml
To my surprise, E has taken up the autism advocacy mantle with her unique flair. She has written a chap of poems that have are on one or more levels autism related. She has mentioned autism on her blog. And when I mentioned that there was an Art and Autism exhibit at a gallery in NYC, she marched to the gallery and sent me back a report.
Then she took it to the next level.
John Patrick McKenzie was one of the artists whose works were shown at the exhibit in NYC. I had not heard of him prior to E buying some of his works (some? Try half of his output for the last 5 years. E does not do things by halves, I think she bought his entire output.). Then, she wrote a marvelous essay which can be found here.
http://www.oovrag.com/essays/essay2005b-6b.shtml
Thursday, April 14, 2005
My First Encounter With A Disabled Person
Today would have been my brother's 41st birthday. He died in a SCUBA diving accident a decade ago. He was diving to try to make a living for his family.
My brother suffered from dyslexia and what would now be known as severe ADHD. He also had problems with his feet growing up and he was forced to wear special, and especially painful, shoes for several years.
I remember one school threatening to expell my brother unless my parents put him on Ritalin. They refused. (I find it sad that parents are still being coerced into medicating their children by school district representatives. In fact, a bill to outlaw such actions is up for vote in the Florida legilature next week.) I remember my parents fighting with schools to try to get help for my brother.
Funny how some things never change. Parents fight, districts refuse.
Every thing was hard for my brother. But he overcame his handicaps despite the complete lack of support from public schools. He finally learned to read, somewhat, and obtained a GED. He drifted into the Marines, was wounded in the first gulf war and ultimately discharged. (Had my parents acceded to school demands to medicate him, he would not have been allowed into the Marines. He credits that organization for turning his life around.) He drifted from job to job, married a very nice woman and had two sweet children.
Yes, my brother was the first person I ever met who was disabled. And a few months before he died we had a long conversation in which I realized that he was a very happy person. Dirt poor, but very content. That surprised me. For I, at the time, was quite well to do; a successful big firm lawyer, Ivy League grad. But I was increasingly disatisfied and suffering from growing bouts of depression. Interesting my mindset at the time. How can someone who is disabled be happy? But there was my disabled brother giving lie to my preconceived notions about happiness.
No one should ever judge another person's quality of life. No matter how disabled that person appears. And there is a growing movement to do just that. Quality of life euthanasia.
I miss my brother terribly. It would be nice were he around to give me advice on happiness.
My brother suffered from dyslexia and what would now be known as severe ADHD. He also had problems with his feet growing up and he was forced to wear special, and especially painful, shoes for several years.
I remember one school threatening to expell my brother unless my parents put him on Ritalin. They refused. (I find it sad that parents are still being coerced into medicating their children by school district representatives. In fact, a bill to outlaw such actions is up for vote in the Florida legilature next week.) I remember my parents fighting with schools to try to get help for my brother.
Funny how some things never change. Parents fight, districts refuse.
Every thing was hard for my brother. But he overcame his handicaps despite the complete lack of support from public schools. He finally learned to read, somewhat, and obtained a GED. He drifted into the Marines, was wounded in the first gulf war and ultimately discharged. (Had my parents acceded to school demands to medicate him, he would not have been allowed into the Marines. He credits that organization for turning his life around.) He drifted from job to job, married a very nice woman and had two sweet children.
Yes, my brother was the first person I ever met who was disabled. And a few months before he died we had a long conversation in which I realized that he was a very happy person. Dirt poor, but very content. That surprised me. For I, at the time, was quite well to do; a successful big firm lawyer, Ivy League grad. But I was increasingly disatisfied and suffering from growing bouts of depression. Interesting my mindset at the time. How can someone who is disabled be happy? But there was my disabled brother giving lie to my preconceived notions about happiness.
No one should ever judge another person's quality of life. No matter how disabled that person appears. And there is a growing movement to do just that. Quality of life euthanasia.
I miss my brother terribly. It would be nice were he around to give me advice on happiness.
Wednesday, April 13, 2005
I'm not dead yet
I’ve been busy.
I didn’t realize how busy until Eileen linked my blog to my name in a recent post of hers. I cannot believe how long it has been since I last posted.
So, what’s been going on in my life? Version 1.1 of the novel is done and I’m shipping it off to another author for review and input. While that is going on, I’m going to get a package together to find an agent. And, thus the real struggle begins – finding someone who will take a flyer on one of the myriad unknown novelists out there.
Thanks go to Jean and Tom, who accepted a submission of mine into the first Hay(na)ku anthology. Six little words written in two drafts made me about as happy as I can be. Getting an acceptance is a delectible rush.
The practice seems to be reaching critical mass – not something that I had hoped would happen so quickly. I wanted the lawyering to be my day job while I continued to write fiction and poetry, but this day job has taken a turn for the 24/7. Balance seems to be missing in my life.
Speaking of Eileen and Tom, any of you who still read this should take a look at Tom’s interview with Eileen over on his fantastic Will to Exchange Blog. Actually makes Chatty seem like a mature, serious poet. Nah . . .
More soon. The parents of another client need to talk.
I didn’t realize how busy until Eileen linked my blog to my name in a recent post of hers. I cannot believe how long it has been since I last posted.
So, what’s been going on in my life? Version 1.1 of the novel is done and I’m shipping it off to another author for review and input. While that is going on, I’m going to get a package together to find an agent. And, thus the real struggle begins – finding someone who will take a flyer on one of the myriad unknown novelists out there.
Thanks go to Jean and Tom, who accepted a submission of mine into the first Hay(na)ku anthology. Six little words written in two drafts made me about as happy as I can be. Getting an acceptance is a delectible rush.
The practice seems to be reaching critical mass – not something that I had hoped would happen so quickly. I wanted the lawyering to be my day job while I continued to write fiction and poetry, but this day job has taken a turn for the 24/7. Balance seems to be missing in my life.
Speaking of Eileen and Tom, any of you who still read this should take a look at Tom’s interview with Eileen over on his fantastic Will to Exchange Blog. Actually makes Chatty seem like a mature, serious poet. Nah . . .
More soon. The parents of another client need to talk.
