The Age of Autism: 'A pretty big secret'
By Dan Olmsted
UPI Senior Editor
It's a far piece from the horse-and-buggies of Lancaster County, Pa., to the cars and freeways of Cook County, Ill.
But thousands of children cared for by Homefirst Health Services in metropolitan Chicago have at least two things in common with thousands of Amish children in rural Lancaster: They have never been vaccinated. And they don't have autism.
"We have a fairly large practice. We have about 30,000 or 35,000 children that we've taken care of over the years, and I don't think we have a single case of autism in children delivered by us who never received vaccines," said Dr. Mayer Eisenstein, Homefirst's medical director who founded the practice in 1973. Homefirst doctors have delivered more than 15,000 babies at home, and thousands of them have never been vaccinated.
The few autistic children Homefirst sees were vaccinated before their families became patients, Eisenstein said. "I can think of two or three autistic children who we've delivered their mother's next baby, and we aren't really totally taking care of that child -- they have special care needs. But they bring the younger children to us. I don't have a single case that I can think of that wasn't vaccinated."
The autism rate in Illinois public schools is 38 per 10,000, according to state Education Department data; the Centers for Disease Control and Prevention puts the national rate of autism spectrum disorders at 1 in 166 -- 60 per 10,000.
"We do have enough of a sample," Eisenstein said. "The numbers are too large to not see it. We would absolutely know. We're all family doctors. If I have a child with autism come in, there's no communication. It's frightening. You can't touch them. It's not something that anyone would miss."
No one knows what causes autism, but federal health authorities say it isn't childhood immunizations. Some parents and a small minority of doctors and scientists, however, assert vaccines are responsible.
This column has been looking for autism in never-vaccinated U.S. children in an effort to shed light on the issue. We went to Chicago to meet with Eisenstein at the suggestion of a reader, and we also visited Homefirst's office in northwest suburban Rolling Meadows. Homefirst has four other offices in the Chicago area and a total of six doctors.
Eisenstein stresses his observations are not scientific. "The trouble is this is just anecdotal in a sense, because what if every autistic child goes somewhere else and (their family) never calls us or they moved out of state?"
In practice, that's unlikely to account for the pronounced absence of autism, says Eisenstein, who also has a bachelor's degree in statistics, a master's degree in public health and a law degree.
Homefirst follows state immunization mandates, but Illinois allows religious exemptions if parents object based either on tenets of their faith or specific personal religious views. Homefirst does not exclude or discourage such families. Eisenstein, in fact, is author of the book "Don't Vaccinate Before You Educate!" and is critical of the CDC's vaccination policy in the 1990s, when several new immunizations were added to the schedule, including Hepatitis B as early as the day of birth. Several of the vaccines -- HepB included -- contained a mercury-based preservative that has since been phased out of most childhood vaccines in the United States.
Medical practices with Homefirst's approach to immunizations are rare. "Because of that, we tend to attract families that have questions about that issue," said Dr. Paul Schattauer, who has been with Homefirst for 20 years and treats "at least" 100 children a week.
Schattauer seconded Eisenstein's observations. "All I know is in my practice I don't see autism. There is no striking 1-in-166," he said.
Earlier this year we reported the same phenomenon in the mostly unvaccinated Amish. CDC Director Dr. Julie Gerberding told us the Amish "have genetic connectivity that would make them different from populations that are in other sectors of the United States." Gerberding said, however, studies "could and should be done" in more representative unvaccinated groups -- if they could be found and their autism rate documented.
Chicago is America's prototypical "City of Big Shoulders," to quote Carl Sandburg, and Homefirst's mostly middle-class families seem fairly representative. A substantial number are conservative Christians who home-school their children. They are mostly white, but the Homefirst practice also includes black and Hispanic families and non-home-schooling Jews, Catholics and Muslims.
They tend to be better educated, follow healthier diets and breast-feed their children much longer than the norm -- half of Homefirst's mothers are still breast-feeding at two years. Also, because Homefirst relies less on prescription drugs including antibiotics as a first line of treatment, these children have less exposure to other medicines, not just vaccines.
Schattauer, interviewed at the Rolling Meadows office, said his caseload is too limited to draw conclusions about a possible link between vaccines and autism. "With these numbers you'd have a hard time proving or disproving anything," he said. "You can only get a feeling about it.
"In no way would I be an advocate to stand up and say we need to look at vaccines, because I don't have the science to say that," Schattauer said. "But I don't think the science is there to say that it's not."
Schattauer said Homefirst's patients also have significantly less childhood asthma and juvenile diabetes compared to national rates. An office manager who has been with Homefirst for 17 years said she is aware of only one case of severe asthma in an unvaccinated child.
"Sometimes you feel frustrated because you feel like you've got a pretty big secret," Schattauer said. He argues for more research on all those disorders, independent of political or business pressures.
The asthma rate among Homefirst patients is so low it was noticed by the Blue Cross group with which Homefirst is affiliated, according to Eisenstein.
"In the alternative-medicine network which Homefirst is part of, there are virtually no cases of childhood asthma, in contrast to the overall Blue Cross rate of childhood asthma which is approximately 10 percent," he said. "At first I thought it was because they (Homefirst's children) were breast-fed, but even among the breast-fed we've had asthma. We have virtually no asthma if you're breast-fed and not vaccinated."
Because the diagnosis of asthma is based on emergency-room visits and hospital admissions, Eisenstein said, Homefirst's low rate is hard to dispute. "It's quantifiable -- the definition is not reliant on the doctor's perception of asthma."
Several studies have found a risk of asthma from vaccination; others have not. Studies that include never-vaccinated children generally find little or no asthma in that group.
Earlier this year Florida pediatrician Dr. Jeff Bradstreet said there is virtually no autism in home-schooling families who decline to vaccinate for religious reasons -- lending credence to Eisenstein's observations.
"It's largely non-existent," said Bradstreet, who treats children with autism from around the country. "It's an extremely rare event."
Bradstreet has a son whose autism he attributes to a vaccine reaction at 15 months. His daughter has been home-schooled, he describes himself as a "Christian family physician," and he knows many of the leaders in the home-school movement.
"There was this whole subculture of folks who went into home-schooling so they would never have to vaccinate their kids," he said. "There's this whole cadre who were never vaccinated for religious reasons."
In that subset, he said, "unless they were massively exposed to mercury through lots of amalgams (mercury dental fillings in the mother) and/or big-time fish eating, I've not had a single case."
Federal health authorities and mainstream medical groups emphatically dismiss any link between autism and vaccines, including the mercury-based preservative thimerosal. Last year a panel of the Institute of Medicine, part of the National Academies, said there is no evidence of such a link, and funding should henceforth go to "promising" research.
Thimerosal, which is 49.6 percent ethyl mercury by weight, was phased out of most U.S. childhood immunizations beginning in 1999, but the CDC recommends flu shots for pregnant women and last year began recommending them for children 6 to 23 months old. Most of those shots contain thimerosal.
Thimerosal-preserved vaccines are currently being injected into millions of children in developing countries around the world. "My mandate ... is to make sure at the end of the day that 100,000,000 are immunized ... this year, next year and for many years to come ... and that will have to be with thimerosal-containing vaccines," said John Clements of the World Health Organization at a June 2000 meeting called by the CDC.
That meeting was held to review data that thimerosal might be linked with autism and other neurological problems. But in 2004 the Institute of Medicine panel said evidence against a link is so strong that health authorities, "whether in the United States or other countries, should not include autism as a potential risk" when formulating immunization policies.
But where is the simple, straightforward study of autism in never-vaccinated U.S. children? Based on our admittedly anecdotal and limited reporting among the Amish, the home-schooled and now Chicago's Homefirst, that may prove to be a significant omission.
--
This ongoing series on the roots and rise of autism welcomes comment. E-mail: dolmsted@upi.com
Showing posts with label Age of Autism. Show all posts
Showing posts with label Age of Autism. Show all posts
December 7, 2005
November 1, 2005
The Age of Autism: The Amish Elephant
The Age of Autism: The Amish Elephant
By Dan Olmsted
UPI Senior Editor
Oct. 29, 2005 at 2:34PM
A specter is haunting the medical and journalism establishments of the United States: Where are the unvaccinated people with autism?
That is just about the only way to explain what now appears to be a collective resistance to considering that question. And like all unanswered questions, this raises another one: Why?
What is the problem with quickly and firmly establishing that the autism rate is about the same everywhere and for everybody in the United States, vaccinated or unvaccinated? Wouldn't that stop all the scientifically illiterate chatter by parents who believe vaccinations made their children autistic? Wouldn't it put to rest concerns that -- despite the removal of a mercury-containing preservative in most U.S. vaccines -- hundreds of millions of children in the developing world are possibly at risk if that preservative is in fact linked to autism?
Calling this issue The Amish Elephant reflects reporting earlier this year in Age of Autism that the largely unvaccinated Amish may have a relatively low rate of autism. That apparent dissimilarity is, in effect, a proverbial elephant in the living room -- studiously ignored by people who don't want to deal with it and don't believe they will have to.
Here are a few cases in point.
Earlier this month the National Consumers League conference in Washington held a session on communicating issues around vaccine safety. I was on the panel and talked about the Amish and autism. In the Q&A session that followed, the first question was for me.
"Is this a proper role for a journalist, or is this just a straw dog set up there with a preliminary answer? It not only showed up where you wrote it. It was all over the place. You did very, very well for UPI (at which point I said, 'Thank you -- please tell my bosses that!') but the question is, did you do very, very well for America?
"Is it appropriate for a journalist -- you weren't reporting, you were investigating. And I just wonder if you think it's an appropriate role for you to play."
My answer: "There's different roles for the press. That's certainly a reasonable question. That is investigative reporting. This idea is something that's already been discarded -- that there's any reason why you would want to look in an unvaccinated population.
"One of my favorite comments about journalism is that it's the wild card of American democracy. The First Amendment says we can do (in the sense of reporting about) whatever we want. So one of our privileges is to get an idea in our head and go look at it."
My questioner was not finished. "I wasn't questioning whether you have a First Amendment right to do it. I think this is more of a question of the ethics, of what value we are bringing to the debate."
My response: "That's probably not a good one for me to answer. Obviously I thought it was ethical."
At that point a fellow panelist, Dr. Louis Cooper, former president of the American Academy of Pediatrics and a staunch vaccine defender, spoke up. "I would jump in and say I thought it was ethical and I think it was useful," said Cooper, a courtly and unfailingly courteous Manhattan pediatrician.
"As you've learned, it was annoying to many people. I wasn't annoyed by it because I thought you kept the process and the debate and the discussion going forward. And we have to do that for one another."
That did not end the discussion. A few minutes later a public-health professor from -- where else? Harvard -- did her own version of Jeopardy!, offering the correct "answer" in the form of a question.
"This question is for Dan. Did you mention the outbreak of polio that happened in the Amish community in the Netherlands that caused widespread problems there, and also the fact that there'd been some context with respect to history in our country in trying to reach out to the Amish to actually encourage them to try to benefit from some of the vaccine technology to the extent that we could?
"So there's been a long history in this country of the CDC trying to reach out to them to the extent that they could. Also with respect to polio, I think what's really amazing is it's such a great story, this is such an exciting time, in the sense that we are very close to global eradication. What that means is we've gone from 1988 when we had 350,000 estimated paralytic polio cases in the world every year to roughly a thousand. It's very exciting that in fact we don't have the terror or the hysteria and all of the fear that surrounded disease.
"I just want to remind everyone that one thing that's very important in the context of reporting these stories is making sure that people do remember and also realize with infectious disease is these things can come back, and until they are eradicated they can come back and devastate us just as much as they did before, except now there are a lot more people.
"There's some related news that people might find interesting. A headline in the Washington Post today, 'Polio outbreak occurs among Amish families.' So I thought people might be interested in that."
At that point the moderator, Dr. Roger Bernier of the Centers for Disease Control, said time was getting short -- why was I not surprised? -- and asked for the next "question."
One thing I've noticed is the more that people want to lecture instead of learn, the more they speak in breathless run-on sentences that are hard to stop, slow down or even diagram. They leave one with the unspoken idea that dialogue -- opening the door to new information -- is somehow dangerous.
These exchanges reminded me of the response I got from Dr. Julie Gerberding, the CDC director, when I asked her this summer, verbatim: "Has the government ever looked at the autism rate in an unvaccinated U.S. population, and if not, why not?"
Her answer, verbatim:
--
In this country, we have very high levels of vaccination as you probably know, and I think this year we have record immunization levels among all of our children, so to (select an unvaccinated group) that on a population basis would be representative to look at incidence in that population compared to the other population would be something that could be done.
But as we're learning, just trying to look at autism in a community the size of Atlanta, it's very, very difficult to get an effective numerator and denominator to get a reliable diagnosis.
I think those kind of studies could be done and should be done. You'd have to adjust for the strong genetic component that also distinguishes, for example, people in Amish communities who may elect not to be immunized (and) also have genetic connectivity that would make them different from populations that are in other sectors of the United States. So drawing some conclusions from them would be very difficult.
I think with reference to the timing of all of this, good science does take time, and it's part of one of the messages I feel like I've learned from the feedback that we've gotten from parents groups this summer (in) struggling with developing a more robust and a faster research agenda, is let's speed this up. Let's look for the early studies that could give us at least some hypotheses to test and evaluate and get information flowing through the research pipeline as quickly as we can.
So we are committed to doing that, and as I mentioned, in terms of just measuring the frequency of autism in the population some pretty big steps have been taken. We're careful not to jump ahead of our data, but we think we will be able to provide more accurate information in the next year or so than we've been able to do up to this point. And I know that is our responsibility.
We've also benefited from some increased investments in these areas that have allowed us to do this, and so we thank Congress and we thank the administration for supporting those investments, not just at CDC but also at NIH and FDA.
--
The latest response to my pesky persistence comes not from academia or government but from my own profession. Last week the prestigious Columbia Journalism Review published an article whose main thrust -- with which I concur -- was that a vigorous debate over a possible link between vaccines and autism was being thwarted by the self-induced timidity of the press.
Some reporters told the author, Daniel Schulman, that they have basically given up on the story because the criticism -- some of it from their own editors -- was so fierce, and the story was so complicated.
Schulman described Age of Autism's efforts to come at the issue "sideways," looking for possible clues to the cause of the disorder in the natural history of autism. And he mentioned our reporting on the Amish:
"Privately, two reporters told me that, while intriguing, Olmsted's reporting on the Amish is misguided, since it may simply reflect genetic differences among an isolated gene pool. ... Both reporters believed that Olmsted has made up his mind on the question and is reporting the facts that support his conclusions."
Ouch. Being slammed by one's peers is never enjoyable, although reporters need to have thick skins and realize they dish this kind of thing out every day. (And those anonymous sources really are annoying, especially when I am happy to be quoted by name about everything.)
What's interesting about the reporters' "private" remarks is the degree of presumed expertise they suggest -- that looking at the Amish is misguided "since it may simply reflect genetic differences among an isolated gene pool." Really? Where did these guys get their doctorate in genetics, Harvard?
This assertion -- that the Amish gene pool could explain everything, based on no data that I'm aware of -- is the kind of self-interested speculation masquerading as expertise that has beset the autism-vaccines discussion for far too long. The term I learned for it long ago is "convenient reasoning," and it does not always have to be conscious.
The Amish have all kinds of standard genetic mental and developmental disorders -- from bipolar to retardation -- and a lot more genetic issues to boot from this supposedly protective "isolated gene pool." The doctors who actually know something about the Amish have never suggested to me that genes have anything to do with a low rate of autism. They seem perplexed.
In upcoming columns, we'll put that question to the right people -- geneticists -- and tell you what we find. It's called reporting.
By Dan Olmsted
UPI Senior Editor
Oct. 29, 2005 at 2:34PM
A specter is haunting the medical and journalism establishments of the United States: Where are the unvaccinated people with autism?
That is just about the only way to explain what now appears to be a collective resistance to considering that question. And like all unanswered questions, this raises another one: Why?
What is the problem with quickly and firmly establishing that the autism rate is about the same everywhere and for everybody in the United States, vaccinated or unvaccinated? Wouldn't that stop all the scientifically illiterate chatter by parents who believe vaccinations made their children autistic? Wouldn't it put to rest concerns that -- despite the removal of a mercury-containing preservative in most U.S. vaccines -- hundreds of millions of children in the developing world are possibly at risk if that preservative is in fact linked to autism?
Calling this issue The Amish Elephant reflects reporting earlier this year in Age of Autism that the largely unvaccinated Amish may have a relatively low rate of autism. That apparent dissimilarity is, in effect, a proverbial elephant in the living room -- studiously ignored by people who don't want to deal with it and don't believe they will have to.
Here are a few cases in point.
Earlier this month the National Consumers League conference in Washington held a session on communicating issues around vaccine safety. I was on the panel and talked about the Amish and autism. In the Q&A session that followed, the first question was for me.
"Is this a proper role for a journalist, or is this just a straw dog set up there with a preliminary answer? It not only showed up where you wrote it. It was all over the place. You did very, very well for UPI (at which point I said, 'Thank you -- please tell my bosses that!') but the question is, did you do very, very well for America?
"Is it appropriate for a journalist -- you weren't reporting, you were investigating. And I just wonder if you think it's an appropriate role for you to play."
My answer: "There's different roles for the press. That's certainly a reasonable question. That is investigative reporting. This idea is something that's already been discarded -- that there's any reason why you would want to look in an unvaccinated population.
"One of my favorite comments about journalism is that it's the wild card of American democracy. The First Amendment says we can do (in the sense of reporting about) whatever we want. So one of our privileges is to get an idea in our head and go look at it."
My questioner was not finished. "I wasn't questioning whether you have a First Amendment right to do it. I think this is more of a question of the ethics, of what value we are bringing to the debate."
My response: "That's probably not a good one for me to answer. Obviously I thought it was ethical."
At that point a fellow panelist, Dr. Louis Cooper, former president of the American Academy of Pediatrics and a staunch vaccine defender, spoke up. "I would jump in and say I thought it was ethical and I think it was useful," said Cooper, a courtly and unfailingly courteous Manhattan pediatrician.
"As you've learned, it was annoying to many people. I wasn't annoyed by it because I thought you kept the process and the debate and the discussion going forward. And we have to do that for one another."
That did not end the discussion. A few minutes later a public-health professor from -- where else? Harvard -- did her own version of Jeopardy!, offering the correct "answer" in the form of a question.
"This question is for Dan. Did you mention the outbreak of polio that happened in the Amish community in the Netherlands that caused widespread problems there, and also the fact that there'd been some context with respect to history in our country in trying to reach out to the Amish to actually encourage them to try to benefit from some of the vaccine technology to the extent that we could?
"So there's been a long history in this country of the CDC trying to reach out to them to the extent that they could. Also with respect to polio, I think what's really amazing is it's such a great story, this is such an exciting time, in the sense that we are very close to global eradication. What that means is we've gone from 1988 when we had 350,000 estimated paralytic polio cases in the world every year to roughly a thousand. It's very exciting that in fact we don't have the terror or the hysteria and all of the fear that surrounded disease.
"I just want to remind everyone that one thing that's very important in the context of reporting these stories is making sure that people do remember and also realize with infectious disease is these things can come back, and until they are eradicated they can come back and devastate us just as much as they did before, except now there are a lot more people.
"There's some related news that people might find interesting. A headline in the Washington Post today, 'Polio outbreak occurs among Amish families.' So I thought people might be interested in that."
At that point the moderator, Dr. Roger Bernier of the Centers for Disease Control, said time was getting short -- why was I not surprised? -- and asked for the next "question."
One thing I've noticed is the more that people want to lecture instead of learn, the more they speak in breathless run-on sentences that are hard to stop, slow down or even diagram. They leave one with the unspoken idea that dialogue -- opening the door to new information -- is somehow dangerous.
These exchanges reminded me of the response I got from Dr. Julie Gerberding, the CDC director, when I asked her this summer, verbatim: "Has the government ever looked at the autism rate in an unvaccinated U.S. population, and if not, why not?"
Her answer, verbatim:
--
In this country, we have very high levels of vaccination as you probably know, and I think this year we have record immunization levels among all of our children, so to (select an unvaccinated group) that on a population basis would be representative to look at incidence in that population compared to the other population would be something that could be done.
But as we're learning, just trying to look at autism in a community the size of Atlanta, it's very, very difficult to get an effective numerator and denominator to get a reliable diagnosis.
I think those kind of studies could be done and should be done. You'd have to adjust for the strong genetic component that also distinguishes, for example, people in Amish communities who may elect not to be immunized (and) also have genetic connectivity that would make them different from populations that are in other sectors of the United States. So drawing some conclusions from them would be very difficult.
I think with reference to the timing of all of this, good science does take time, and it's part of one of the messages I feel like I've learned from the feedback that we've gotten from parents groups this summer (in) struggling with developing a more robust and a faster research agenda, is let's speed this up. Let's look for the early studies that could give us at least some hypotheses to test and evaluate and get information flowing through the research pipeline as quickly as we can.
So we are committed to doing that, and as I mentioned, in terms of just measuring the frequency of autism in the population some pretty big steps have been taken. We're careful not to jump ahead of our data, but we think we will be able to provide more accurate information in the next year or so than we've been able to do up to this point. And I know that is our responsibility.
We've also benefited from some increased investments in these areas that have allowed us to do this, and so we thank Congress and we thank the administration for supporting those investments, not just at CDC but also at NIH and FDA.
--
The latest response to my pesky persistence comes not from academia or government but from my own profession. Last week the prestigious Columbia Journalism Review published an article whose main thrust -- with which I concur -- was that a vigorous debate over a possible link between vaccines and autism was being thwarted by the self-induced timidity of the press.
Some reporters told the author, Daniel Schulman, that they have basically given up on the story because the criticism -- some of it from their own editors -- was so fierce, and the story was so complicated.
Schulman described Age of Autism's efforts to come at the issue "sideways," looking for possible clues to the cause of the disorder in the natural history of autism. And he mentioned our reporting on the Amish:
"Privately, two reporters told me that, while intriguing, Olmsted's reporting on the Amish is misguided, since it may simply reflect genetic differences among an isolated gene pool. ... Both reporters believed that Olmsted has made up his mind on the question and is reporting the facts that support his conclusions."
Ouch. Being slammed by one's peers is never enjoyable, although reporters need to have thick skins and realize they dish this kind of thing out every day. (And those anonymous sources really are annoying, especially when I am happy to be quoted by name about everything.)
What's interesting about the reporters' "private" remarks is the degree of presumed expertise they suggest -- that looking at the Amish is misguided "since it may simply reflect genetic differences among an isolated gene pool." Really? Where did these guys get their doctorate in genetics, Harvard?
This assertion -- that the Amish gene pool could explain everything, based on no data that I'm aware of -- is the kind of self-interested speculation masquerading as expertise that has beset the autism-vaccines discussion for far too long. The term I learned for it long ago is "convenient reasoning," and it does not always have to be conscious.
The Amish have all kinds of standard genetic mental and developmental disorders -- from bipolar to retardation -- and a lot more genetic issues to boot from this supposedly protective "isolated gene pool." The doctors who actually know something about the Amish have never suggested to me that genes have anything to do with a low rate of autism. They seem perplexed.
In upcoming columns, we'll put that question to the right people -- geneticists -- and tell you what we find. It's called reporting.
August 19, 2005
Why The Experts Suck
The Age of Autism: March of the experts
Dan Olmstead
Aug 17, 2005, 21:49 GMT
WASHINGTON, DC, United States (UPI) -- The news that
the first child diagnosed with autism got better after
medical treatment -- while leading experts didn`t make
the connection -- suggests how research and reality
have been distorted for decades.
As The Age of Autism reported Monday, the child known
as Case 1 is alive and doing remarkably well in the
same small Mississippi town he grew up in. Although we
didn`t talk directly to "Donald T.," his brother told
us that he had a "miraculous response" to gold salts
treatment at the age of 12.
It cleared up a devastating case of juvenile arthritis
and -- astonishingly -- made a marked difference in
Donald`s autism, he said.
"When he was finally released, the nervous condition
he was formerly afflicted with was gone," his brother
said of the two- to three-month gold salts treatment
in 1947.
"The proclivity to excitability and extreme
nervousness had all but cleared up, and after that he
went to school and had one more little flare-up (of
arthritis) when in junior college." He also became
"more sociable," his brother said, and was invited to
join a college fraternity.
That was 58 years ago, yet we`re not aware of any
mention in the millions of words written about autism
that this very first case may have gotten better
following a novel medical treatment.
Instead, today`s mainstream medical experts dismiss
the idea of biomedical interventions such as
anti-inflammation and detoxification therapies as
dangerous hooey perpetrated by quacks and charlatans.
Yet the treatment Donald got was patently biomedical:
Medicine prescribed by a doctor to treat a physical
illness appears to have had a positive effect on his
mental disorder.
The official hostility to such approaches is currently
so great that the only research under way on the topic
is funded by parents. An official at the National
Institutes of Mental Health told The New York Times
last month that it "isn`t responsible" to prescribe
chelation, which is designed to eliminate heavy metals
from children with autism.
Yet dozens of parents -- and, for that matter, dozens
of doctors outside the mainstream treatment community
-- say the treatments have made huge improvements.
Some of them have banded together at
generationrescue.org; they argue that autism is
mercury poisoning (primarily from a preservative that
was used in vaccines) and that getting the mercury out
has cured some children of autism and vastly improved
the condition of others.
Other doctors, many of them connected with Defeat
Autism Now!, a project of the Autism Research
Institute, are using everything from special diets to
B vitamins to folinic acid. They cite similar
successes, and many parents agree.
These parents and doctors get the modern equivalent of
what awaited the parents of early autistic children --
skepticism and scorn.
In the beginning, there was strong suspicion -- in
many quarters, certainty -- that bad parenting caused
autism. This came in part from the striking fact that
so many of the parents of those early cases were
successful, affluent, career-oriented professionals.
Even more suspiciously, many of the mothers had
college degrees and -- alert the mental-health
authorities! -- their own careers.
"One other fact stands out prominently," wrote Leo
Kanner, the child psychiatrist who first identified
autism, beginning with D onaldT.,inhislandmark1943BR paper on the disorder. "In the whole group, there are
very few really warmhearted fathers and mothers. ...
The question arises whether or to what extent this
fact has contributed to the condition of the
children."
While Kanner also noted that the children appeared to
have been autistic from birth -- and thus the parents`
personalities could not entirely explain their
children`s disorder -- it set the stage for a tragic
morality play over the next several decades.
The worst was Bruno Bettelheim, who wrote in "The
Empty Fortress" in 1967: "I believe the initial cause
of withdrawal is rather the child`s correct
interpretation of the negative emotions with which the
most significant figures in his environment approach
him. ... The tragedy of children fated to become
autistic is that such a view of the world happens to
be correct for their world."
We couldn`t help thinking of all that when Donald`s
brother told us Kanner suggested "the best thing that
could happen" would be to place Donald with another
family -- a childless farm couple. The parents
complied, but it was only after the juvenile-arthritis
attack four years later, and the subsequent gold-salts
treatment, that Donald dramatically improved.
Yet Kanner attributed the change to "the intuitive
wisdom of a tenant farmer couple, who knew how to make
him utilize his futile preoccupations for practical
purposes and at the same time helped him to maintain
contact with his family."
It wasn`t until Bernard Rimland wrote Infantile Autism
in 1964 that the idea of the "refrigerator mother"
began to change -- slowly.
What makes Donald`s case all the more interesting is
that none of the specialists his family took him to --
including the Mayo Clinic -- could identify the cause
of his uncontrollable fever and joint pain when he was
12, his brother said. It wasn`t until Donald`s father
happened to mention the affliction to a practicing
physician in a nearby small town that juvenile
arthritis, a rare autoimmune disorder, was identified.
Here is how one of our correspondents summarized this
sequence:
1. The world expert (Kanner) was incompetent with
respect to medical assessment of illness.
2. He assumed that they needed to get Donald away from
his parents. They really did think it was a parental
abuse problem back then.
3. Kanner mistakenly attributed Donald`s progress to
the "therapist" when it was really the medicine.
4. Recovery is possible with biomedical treatment.
5. Biomedical treatment ideas are not likely to come
from the autism experts (Kanner) or the prestigious
clinics (Mayo). They come from real medical doctors
who know how to recognize real illness and
autoimmunity in the kids.
Contrast that analysis with the standard dismissals
when parents claim biomedical treatments have helped:
-- They may be indulging in wishful thinking --
wanting their child to improve so badly that they
delude themselves;
-- They may have tried another treatment such as
behavior therapy that is actually responsible;
-- Their child may not have been very autistic in the
first place.
Does anyone think Donald T., the first child diagnosed
with autism, was not very autistic in the first place?
Surely, Donald`s family was not "imagining" his
improvement, since they weren`t even trying to treat
his autism.
Of course, that intuitive, wise, childless farm couple
may have made all the difference -- that is, if you
think autism is caused by unwise, non-intuitive
mothers and fathers (bad parents).
We don`t know what to make of Donald`s evident
improvement -- and the fact that it has stayed buried
for so long even as parents and researchers
frantically turn over every stone to uncover
treatments for this burgeoning, awful disorder.
We acknowledge we have not met Donald and are unable
to vouch for his brother`s account, although we
certainly found him credible and convincing.
But it does make us wonder whether much has changed.
These days, parents aren`t condemned for having
autistic children -- just for doing something about it
without the permission of experts who are certain
nothing can be done.
In upcoming columns we`ll look at the implications of
Donald`s treatment.
E-mail: dolmsted@upi.com
Dan Olmstead
Aug 17, 2005, 21:49 GMT
WASHINGTON, DC, United States (UPI) -- The news that
the first child diagnosed with autism got better after
medical treatment -- while leading experts didn`t make
the connection -- suggests how research and reality
have been distorted for decades.
As The Age of Autism reported Monday, the child known
as Case 1 is alive and doing remarkably well in the
same small Mississippi town he grew up in. Although we
didn`t talk directly to "Donald T.," his brother told
us that he had a "miraculous response" to gold salts
treatment at the age of 12.
It cleared up a devastating case of juvenile arthritis
and -- astonishingly -- made a marked difference in
Donald`s autism, he said.
"When he was finally released, the nervous condition
he was formerly afflicted with was gone," his brother
said of the two- to three-month gold salts treatment
in 1947.
"The proclivity to excitability and extreme
nervousness had all but cleared up, and after that he
went to school and had one more little flare-up (of
arthritis) when in junior college." He also became
"more sociable," his brother said, and was invited to
join a college fraternity.
That was 58 years ago, yet we`re not aware of any
mention in the millions of words written about autism
that this very first case may have gotten better
following a novel medical treatment.
Instead, today`s mainstream medical experts dismiss
the idea of biomedical interventions such as
anti-inflammation and detoxification therapies as
dangerous hooey perpetrated by quacks and charlatans.
Yet the treatment Donald got was patently biomedical:
Medicine prescribed by a doctor to treat a physical
illness appears to have had a positive effect on his
mental disorder.
The official hostility to such approaches is currently
so great that the only research under way on the topic
is funded by parents. An official at the National
Institutes of Mental Health told The New York Times
last month that it "isn`t responsible" to prescribe
chelation, which is designed to eliminate heavy metals
from children with autism.
Yet dozens of parents -- and, for that matter, dozens
of doctors outside the mainstream treatment community
-- say the treatments have made huge improvements.
Some of them have banded together at
generationrescue.org; they argue that autism is
mercury poisoning (primarily from a preservative that
was used in vaccines) and that getting the mercury out
has cured some children of autism and vastly improved
the condition of others.
Other doctors, many of them connected with Defeat
Autism Now!, a project of the Autism Research
Institute, are using everything from special diets to
B vitamins to folinic acid. They cite similar
successes, and many parents agree.
These parents and doctors get the modern equivalent of
what awaited the parents of early autistic children --
skepticism and scorn.
In the beginning, there was strong suspicion -- in
many quarters, certainty -- that bad parenting caused
autism. This came in part from the striking fact that
so many of the parents of those early cases were
successful, affluent, career-oriented professionals.
Even more suspiciously, many of the mothers had
college degrees and -- alert the mental-health
authorities! -- their own careers.
"One other fact stands out prominently," wrote Leo
Kanner, the child psychiatrist who first identified
autism, beginning with D onaldT.,inhislandmark1943BR paper on the disorder. "In the whole group, there are
very few really warmhearted fathers and mothers. ...
The question arises whether or to what extent this
fact has contributed to the condition of the
children."
While Kanner also noted that the children appeared to
have been autistic from birth -- and thus the parents`
personalities could not entirely explain their
children`s disorder -- it set the stage for a tragic
morality play over the next several decades.
The worst was Bruno Bettelheim, who wrote in "The
Empty Fortress" in 1967: "I believe the initial cause
of withdrawal is rather the child`s correct
interpretation of the negative emotions with which the
most significant figures in his environment approach
him. ... The tragedy of children fated to become
autistic is that such a view of the world happens to
be correct for their world."
We couldn`t help thinking of all that when Donald`s
brother told us Kanner suggested "the best thing that
could happen" would be to place Donald with another
family -- a childless farm couple. The parents
complied, but it was only after the juvenile-arthritis
attack four years later, and the subsequent gold-salts
treatment, that Donald dramatically improved.
Yet Kanner attributed the change to "the intuitive
wisdom of a tenant farmer couple, who knew how to make
him utilize his futile preoccupations for practical
purposes and at the same time helped him to maintain
contact with his family."
It wasn`t until Bernard Rimland wrote Infantile Autism
in 1964 that the idea of the "refrigerator mother"
began to change -- slowly.
What makes Donald`s case all the more interesting is
that none of the specialists his family took him to --
including the Mayo Clinic -- could identify the cause
of his uncontrollable fever and joint pain when he was
12, his brother said. It wasn`t until Donald`s father
happened to mention the affliction to a practicing
physician in a nearby small town that juvenile
arthritis, a rare autoimmune disorder, was identified.
Here is how one of our correspondents summarized this
sequence:
1. The world expert (Kanner) was incompetent with
respect to medical assessment of illness.
2. He assumed that they needed to get Donald away from
his parents. They really did think it was a parental
abuse problem back then.
3. Kanner mistakenly attributed Donald`s progress to
the "therapist" when it was really the medicine.
4. Recovery is possible with biomedical treatment.
5. Biomedical treatment ideas are not likely to come
from the autism experts (Kanner) or the prestigious
clinics (Mayo). They come from real medical doctors
who know how to recognize real illness and
autoimmunity in the kids.
Contrast that analysis with the standard dismissals
when parents claim biomedical treatments have helped:
-- They may be indulging in wishful thinking --
wanting their child to improve so badly that they
delude themselves;
-- They may have tried another treatment such as
behavior therapy that is actually responsible;
-- Their child may not have been very autistic in the
first place.
Does anyone think Donald T., the first child diagnosed
with autism, was not very autistic in the first place?
Surely, Donald`s family was not "imagining" his
improvement, since they weren`t even trying to treat
his autism.
Of course, that intuitive, wise, childless farm couple
may have made all the difference -- that is, if you
think autism is caused by unwise, non-intuitive
mothers and fathers (bad parents).
We don`t know what to make of Donald`s evident
improvement -- and the fact that it has stayed buried
for so long even as parents and researchers
frantically turn over every stone to uncover
treatments for this burgeoning, awful disorder.
We acknowledge we have not met Donald and are unable
to vouch for his brother`s account, although we
certainly found him credible and convincing.
But it does make us wonder whether much has changed.
These days, parents aren`t condemned for having
autistic children -- just for doing something about it
without the permission of experts who are certain
nothing can be done.
In upcoming columns we`ll look at the implications of
Donald`s treatment.
E-mail: dolmsted@upi.com
Subscribe to:
Posts (Atom)