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Thursday, May 26, 2005

The Age of Autism: Oaklawn


WASHINGTON, May 26 (UPI) -- Finally. I found a place that could tell me all about Amish people with autism.

"I talked to the people who work with the Amish program specifically, because they have more familiarity with the Amish families, and they said, oh yeah, definitely, they have seen autism in Amish families," said Gloria Holub, a staff member at Oaklawn Psychiatric Center in Goshen, Ind. The center treats people with mental health problems, including autism.

"We started our Amish program four or five years ago. We've always had some Amish patients but they were just integrated into the regular treatment program," she told me. But they were "uncomfortable in a unit with television on in a therapy group with 'English'" as the Amish call the rest of us.

Working with Amish bishops in the area around Goshen, Oaklawn helped create a first-of-its-kind residential facility that uses the center's therapists. It does "quite a large business," Holub said, and draws Amish from all over including Pennsylvania and Ohio, the two largest populations. One therapy group speaks only Pennsylvania Dutch.

So far in my search for autism among the Amish, I'd found three or possibly four cases in Lancaster County, Pa. In addition, a pediatrician in Virginia Beach, Va., told me he was treating six -- three from Pennsylvania, two from Ohio and one from Texas. With a population approaching 100,000 nationwide, and a national autism rate of 1 in 166 children, there should be several hundred more.

They seem few and far between, however, and people who should know -- an Amish-Mennonite mother with an autistic daughter adopted from China, a pediatric hospital nurse in Pennsylvania Dutch country, a doctor who has treated thousands of Amish for nearly 25 years -- told me they were struck by the seeming low prevalence. Intriguingly, four of the Virginia doctor's cases and at least two of those in Lancaster County share a possible link to mercury, the two in Lancaster by way of vaccinations and the others through what the doctor said were very high mercury levels.

Few Amish vaccinate their children, which is what led me to explore their world in the first place. Some parents of autistic children and a small minority of doctors and scientists assert that mercury in vaccines and the environment triggered a sharp rise in autism cases in the 1990s. Most mainstream experts and public health officials reject that theory as totally discredited. Thimerosal, the mercury-based vaccine preservative, was phased out in the United States beginning in 1999.

Finding the autism rate in an unvaccinated population might help settle the issue, and it was a logical progression in the series I've been doing about the natural history of the disorder. The first surprise was that no one seems to have looked.

Just because autistic Amish are hard to find doesn't mean they aren't there, of course, especially given the insular nature of the Amish community. A number of readers have reminded me of that fact. Some argue that the Amish might have a genetic immunity to the ailment.

Now, it seemed, I had come to the right place to get some answers.

"I asked the two people who work with that program and they both definitely have seen autism in the Amish community in kids," Holub told me. I asked her if I could talk to one of the therapists, and she put a friendly man named Dale Raber on the phone.

"I've been trying to find out whether there is autism in the Amish community," I explained, "and I haven't found much of it, and I understand you're aware of some folks in the Amish community with autism?"

"We have a specific Amish program more with adults with schizophrenia, bipolar, depression, some of the more typical mental health issues, but, there are a number of, I mean I don't have a number of them here that I have personal experience with, but I think there are a number of cases of autism among the Amish."

"You're familiar with, like, actual specific cases?" I asked.

"I haven't, I've had one actual client here who was diagnosed with Asperger's, which is in the autism family," Raber said. "And that person wasn't actually Amish -- our Amish program also serves what you would call 'horse-and-buggy Mennonites.'

"I would think there would have to be autism among the Amish, just because it's among the rest of the population," Raber said. He added that because autistic kids tend to have problems once they get to school, they might end up using developmental disability agencies as opposed to a mental health center like Oaklawn.

"So that would be my guess why we don't see a lot of it. I would think that it probably happens among the Amish. I don't have any evidence to back this up, but I would guess it's about the same it is in the general population."

Raber remarked that the Asperger's case was surprising to see among the horse-and-buggy Mennonites -- that he was more familiar with it as a "West Coast" phenomenon. Several national stories have highlighted the rate of Asperger's Disorder in California, particularly in the high-tech Silicon Valley south of San Francisco.

I told Raber that I was trying to test the idea that the Amish, due to a low rate of vaccination or low exposure to some other possible culprit, might hold clues to autism.

"Ohhhh.....," he responded, sounding surprised and intrigued. I asked if the horse-and-buggy Mennonites vaccinated their children. He consulted with a colleague in the office at the time and decided they probably did.

You can see why people conclude there are about the right number of Amish with autism -- there should be, and it's certainly everywhere else. You see lots of Amish, and you see lots of people with autism, and you put them together. Even the doctor in Lancaster County never thought about it till I asked him, and he has seen thousands of Amish patients over 25 years -- not one, he suddenly realized, with autism.

Looking for them is starting to seem like watching smoke from a roadside brushfire drift slowly out of sight.

This ongoing series on the roots and rise of autism aims to be interactive with readers and will take note of comment, criticism and suggestions. E-mail: dolmsted@upi.com

Copyright 2005 by United Press International. All Rights Reserved.

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Tuesday, May 24, 2005

The Age of Autism: Heavy metal


WASHINGTON, May 24 (UPI) -- Parents of autistic children Tuesday launched an organization called Generation Rescue based on their conviction that flushing mercury out of children's bodies improves and in some instances reverses autism.

"For parents who are on their backs with a foot on their neck trying to keep their lives together, we want to help them get to the truth as quickly as possible to help their kids. That is the single reason Generation Rescue exists," said co-founder J.B. Handley of San Francisco, father of a three-year-old, Jamison, who he says has been transformed by chelation (key-LAY-shun) therapy.

The technique involves using doctor-supervised pills or creams that induce excretion of mercury and other toxic metals. While chelation has been used for 40 years as a treatment for lead and other heavy metal poisoning, its impact on autism is unproven and highly controversial.

More controversial than the process, however, is what its adherents say it shows about the cause of autism.

"Through our own research and initiative we have discovered a truth that we feel every parent should know," states the group's Web site, generationrescue.org, which Handley said is funded exclusively by parent donations.

"Autism, Asperger's, ADD, ADHD ... other learning disabilities, and many auto-immune disorders including asthma, juvenile onset diabetes, and anaphylactic food allergies are all caused by and symptoms of mercury poisoning primarily induced by a vaccine preservative called thimerosal."

Thimerosal was used in an increasing number of childhood vaccines from 1931 through 1999, when the federal government recommended phasing it out. The increase in thimerosal follows the same curve as the rise in Autism Spectrum Disorders, which now affect 1 in every 166 U.S. children, according to the Centers for Disease Control and Prevention.

Chelation proceeds on the assumption that because mercury is the problem, getting it out is a big part of the solution.

"The most dramatic effect is the two-way conversation and natural childlike play," Karen Beauvais of Atlanta told United Press International, speaking about her five-year-old son Josh after he underwent chelation. "Only the Mom of a once-silent autistic child could fully appreciate that. It is so nice to hear our little chatterbox talk now."

She said Josh had intestinal problems with an oral chelation compound but has made huge gains with a cream that "brings the chelator through the skin much like hormonal creams. It's great stuff."

"Many parents could benefit from chelation detox if it were mainstream treatment. Funny -- if your child is suffering from lead poisoning they are immediately chelated. But very few autistic children are even offered the option."

A thimerosal-autism link has been flatly rejected by most of the mainstream medical establishment, citing epidemiological studies. A year ago, the prestigious Institute of Medicine not only dismissed the idea but said it was so discredited that research money should go to more "promising" areas. While the IOM says overwhelming evidence shows no link between autism and thimerosal, the director of the CDC, Dr. Julie Gerberding, has told Congress she is keeping "an open mind" about that.

More recently, some clinical studies have suggested a link between autism and mercury. One study in rats found that a genetically susceptible strain developed autistic-like behavior when given thimerosal at a level proportional to childhood vaccines; another reported that many autistic children are low in glutathione, a key anti-oxidant for removing heavy metals from the body; and a Texas study found an association between higher levels of autism and higher exposure to environmental mercury.

Generation Rescue's Handley said his son received thimerosal-containing flu shots -- which are still being given to children despite the phase-out of thimerosal-containing childhood vaccines that began in 1999 -- and may have received other exposures because such vaccines were not immediately pulled from the market.

Handley said his son's improvement in the eight months since they began chelation -- with another 10 months planned -- is "two different worlds. He's gone from being on Pluto, meaning no recognition of his parents' arrival, departure or presence, to being extraordinarily aware of our comings and goings. His eye contact has gone up 1000-fold."

Hundreds of parents are volunteering to serve as "rescue angels" to help families learn about chelation therapy, Handley said; their contacts are listed on the Web site. "They all feel as passionately as my wife and I that parents need to know their kids can get better," Handley said. "We're tired of reading that this is a no-known-cause, no-cure disorder. That's simply an untrue statement."

In probable order of impact, the group asserts, the autism epidemic has been caused by:

--Thimerosal from vaccines;

--"synergistic toxins" that aggravate mercury's effects including antibiotics, aluminum from vaccines, and the body's own testosterone, which the group says explains why 80 to 90 percent of children with autism are boys;

--the mother's mercury load while pregnant, including mercury-containing vaccines such as the flu shot and RHO-gam given to RH-negative women; dental mercury amalgams; thimerosal-containing vaccines received prior to pregnancy; and fish consumption before, during and after pregnancy;

--the child's own dental mercury amalgams;

--the child's high seafood consumption;

--environmental mercury that is a byproduct of coal-fired industrial plants, and

--other sources including consumer products that contain mercury.

Some of the parents charge that the federal government and mainstream medicine, while skeptical of chelation and scornful of the theory behind it, have been strikingly uninterested in studying its effectiveness. That will be the subject of a future column.

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@upi.com
Copyright 2005 by United Press International. All Rights Reserved.

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Monday, May 23, 2005

The Age of Autism: Goshen


WASHINGTON, May 23 (UPI) -- Our search for Amish people with autism is now departing Lancaster County, Pa., and heading for the Midwest, where a significant percentage of the nation's 80,000 Amish can be found.

Lancaster County -- home to 22,000 Amish and the heart of the Pennsylvania Dutch Country -- was our first stop. We found evidence of only three or four Amish children with Austism Spectrum Disorders in Lancaster County; there should be dozens based on the 1-in-166 prevalence among "the English," as the Amish call the rest of us. We're still looking in Lancaster, but widening the search at the same time.

Nationwide, there are 80,820 Old Order Amish according to the almanac. By the time you include Amish-Mennonites and allied believers that number easily passes 100,000, but we're staying on the conservative side in every sense to avoid inflating expectations.

Dividing those Old Order Amish by the autism rate yields nearly 500 nationwide who should have Autism Spectrum Disorders -- that is, if autism is primarily a genetic disorder that has always existed but is just now being better identified.

Let's cut that number in half, to represent only the full-syndrome autism cases that are impossible to miss and don't shade into any other diagnosis. And let's lower that number to an even 100, in case autism now affects children and adolescents in much higher numbers than their elders -- in case it has become virtually epidemic among them, in other words. (Remember, the Amish have large families; 10 children is not rare and autism shouldn't be, either.)

Next stop: the Amish community around Goshen, Ind. According to the local Web site amishcountry.org, "While they may wait longer, or try alternative treatments, Amish families may use the services of doctors and modern hospitals when necessary."

So we called a medical practice we were referred to in Middlebury, heart of the Amish community in northern Indiana, and asked about Amish people with autism. The conversation with a staff member went exactly like this:

"There are no doctors here today. They're all in a meeting. I'll give them this message."


"You know, I've been here for five years and I don't think I've seen one autistic Amish come in here. ... "

"Would you have, do you think, if there were any? I mean, do you guys treat Amish folks?"

"Oh we do, yes, quite a few."

"So, that's kind of interesting, huh?"

"Yeah, but you know that doesn't mean that ... Yeah, that is, I never thought of that before. This is very interesting."

We seem to be starting off on the same foot in Goshen that we ended on in Lancaster, where the Amish do see doctors, but the doctors say they don't see autism.

"You'll find all the other stuff, but we don't find the autism," said a Lancaster doctor who has treated thousands of Amish for nearly 25 years. "We would have seen it. It's not something they would hide. They're not like that."

Calling doctors who treat Amish patients in the heart of Amish country is the sort of unscientific, anecdotal approach that drives the autism experts absolutely buggy, to use an irresistible word -- though not buggy enough to look for themselves, apparently. We're told that recently, parents of autistic children met at a fairly high level with congressional and White House representatives and mentioned the Amish issue.

"It's intriguing, but of course it's not a scientific study," a government official pointed out.

More on Goshen and the Amish in upcoming columns.

e-mail: dolmsted@upi.com

Copyright 2005 by United Press International. All Rights Reserved.

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Friday, May 20, 2005

The Age of Autism: Mercury and the Amish


WASHINGTON, May 20 (UPI) -- That's not something I expected to encounter. I had been looking for an unvaccinated population to test the controversial idea that vaccines, and in particular the mercury-based preservative called thimerosal, could be behind the apparent rise in autism cases over the past decade.

The concept: If the Amish have little or no autism, it might point a finger at something to which they have not been exposed.

Most of the medical establishment, it must be stated upfront, considers the idea that thimerosal could have played a role in the rise of autism disproven and dangerous. As noted in the last column, however, the director of the Centers for Disease Control and Prevention says she has "an open mind" about that possibility.

So do I, having come across correlations that made me want to look more closely at thimerosal. For instance, the first child diagnosed with autism in the United States was born in 1931, the same year thimerosal was first used in a vaccine. And autism diagnoses exploded in the 1990s, the same decade children got an increasing number of thimerosal-containing vaccines (it was phased out starting in 1999). Tantalizing, but proof of nothing.

So I turned to the 22,000 Amish in Lancaster County, Pa. I didn't expect to find many, if any, vaccinated Amish: they have a religious exemption from the otherwise mandatory U.S. vaccination schedule. When German measles broke out among Amish in Pennsylvania in 1991, the CDC reported that just one of 51 pregnant women they studied had ever been vaccinated against it.

To cut to the chase, what I've found to date is very little evidence of autism among the Amish in Lancaster County, far below the 1 in 166 rate of Autism Spectrum Disorders the CDC cites for children born in the United States today. I don't discount the idea that they might be more difficult to find or diagnose, and I'm still looking.

I did find three or possibly four children with autism and, weirdly, a possible link to vaccinations. One was a child adopted from China, where she got all her vaccinations before being vaccinated all over again when she got to the states. Her Amish-Mennonite mother said she believes that vaccine load caused her autism. The mother told me about another child who had what she described as an immediate vaccine reaction that left her autistic at age 15 months.

That mother said a minority of younger Amish have begun getting their children vaccinated, though a local doctor who has treated thousands of Amish said the rate is still less than 1 percent.

The pattern I was noticing then took an interesting twist. From a doctor's posting on an alternative health Web site, I learned about several cases of autism among Amish children who had not, in fact, been vaccinated.

I called that doctor, Lawrence Leichtman, at his office in Virginia Beach, Va. A pediatrician and geneticist who has been widely published in medical journals, he told me he was treating six unvaccinated Amish children and adolescents -- three from Pennsylvania, including one from Lancaster County; two from Ohio, and one from Texas.

That seemed to render any relationship between autism and mercury exposure in the Amish less likely. But, not after what Leichtman said next.

"By the way," he volunteered, "four of these six kids all have elevated mercury. The only two that don't, one of them is from Texas and one is from Iowa. But all of the people in Pennsylvania and one of the people in Iowa have elevated mercury."

Given what I had already come across in Lancaster County, I wanted to hear more about that. Were the mercury levels significantly higher? I asked. "Oh yes," he responded.

What did he think was going on?

"The people in Pennsylvania, I've actually tracked back on them," Leichtman said. "There's definitely a plume from one of the coal-fired power plants that just goes right over them. And the one in Iowa, it's a little less obvious because actually he's in the Amana Colonies, but I have seen reports of the area around Amana having elevated levels of mercury in the environment."

As it happens, the Pittsburgh Post reported last week that Pennsylvania has four of the nation's 10 "dirtiest power plants." Mercury is a byproduct of coal combustion.

Leichtman also believes that northern states "get most of the prevailing wind that comes across the Pacific. You get that trans-Pacific flow which is all Chinese mercury. We're getting a load of Chinese mercury, as far as I can tell."

Leichtman's comments meant that the two people I talked to, who knew anything about autism among the Amish, independently brought up mercury exposure -- in vaccines and in the environment-- as the cause of most of the cases.

That's a link others have made, although not to the Amish, whose autism prevalence has apparently never been studied:

- "We believe that thimerosal and environmental mercury -- which are worldwide pollutants -- are behind the surge" in autism in the 1990s, wrote Sallie Bernard in 2002. She is a founder of the group Safe Minds, which wants mercury out of all medical products. Bernard co-authored a controversial 1999 study about thimerosal, "Autism: A novel form of mercury poisoning."

- "In the end it is mercury in the brain that causes such problems, and that mercury can come from several sources," said Boyd Haley, chairman of the chemistry department at the University of Kentucky and another maverick on thimerosal.

"Therefore, a logical approach is to think that all mercury exposures are additive, even if some may be more causative than others."

Haley cited a recent Texas study, first reported by United Press International in March, that found an association between autism rates and exposure to industrial mercury emissions in Texas counties. One county with high autism but low exposure to mercury emissions turned out on closer inspection to be the site of a huge abandoned mercury mine, the researchers found.

Leichtman believes the damage to children is being done by environmental mercury, not the mercury in vaccines (my own research makes me think that if it's either, it's both). He said he can detect elevated mercury levels in about half his 500 autism patients.

"Environmental mercury is horrible," he said, "and I think that's where it's coming from. To me, people with autism are the canaries in the coal mine. A lot of them are reflecting the damage from all of that."

Leichtman, like a number of other doctors, is trying to flush mercury out of autistic children through a process called chelation (key-LAY-shun).

Chelation as a treatment for autism is unproven and controversial (what about autism is not unproven and controversial?), and it carries a risk of serious side effects. Chelation has been used for 40 years in cases of heavy metal toxicity, including lead poisoning.

But does it help children with autism?

"The people in Pennsylvania wouldn't take chelation," Leichtman said, and noted the Amish aversion to medical procedures and drugs. "One in Iowa did. He certainly did better."

We'll look at chelation and its implications in the next column.

e-mail: dolmsted@upi.com

Copyright 2005 by United Press International. All Rights Reserved.

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Wednesday, May 18, 2005

The Age of Autism: Mercury ascending


Washington, DC - A year ago, the prestigious Institute of Medicine slammed the door on the idea that mercury in vaccines bore any relation to autism.

"The overwhelming evidence from several well-designed studies indicates that childhood vaccines are not associated with autism," the chairman of the IOM panel, Harvard scientist Marie McCormick, told reporters last May 18.

The panel went further: It took the unusual step of urging that research money go instead to more "promising" areas. You can't slam a door much harder than that.

But 12 months later, that door seems slightly ajar. One big doorstop is the new 441-page book by David Kirby called "Evidence of Harm," a compelling portrayal of parents and scientists who have pushed the vaccines-autism theory. They contend that a mercury-based preservative called thimerosal, in an increasing number of vaccinations, triggered an autism epidemic in the 1990s.

Thimerosal was phased out of U.S. childhood vaccines beginning in 1999.
One memorable vignette in Kirby's book is a meeting between several of those advocates and Dr. Julie Gerberding, who had been director of the Centers for Disease Control and Prevention less than two years.

Last May 12, a week before the IOM report, Gerberding flew in from Atlanta to meet them -- at her request -- in the Rayburn House Office Building on Capitol Hill. Rep. Dave Weldon, R-Fla., a medical doctor who is a persistent critic of thimerosal and the CDC's handling of the issue, also was present.

Taking turns, the parents and scientists methodically laid out their case.
Mady Hornig of Columbia University described how mice with an autoimmune genetic predisposition develop autistic-like behaviors after being injected with thimerosal-containing vaccines.

"Hornig played the videos for Gerberding, who suddenly appeared stunned," Kirby recounts in his book. "She brought her hands to her face in disbelief.

"Dave Weldon had a similar reaction. He stopped Hornig in the middle of her ghastly presentation. 'Wait a minute,' he said. 'Am I to understand you correctly? You injected these mice with the same amount of mercury, relatively speaking, that infants receive in vaccines, and you saw these kinds of mutilatory behaviors? You saw this mouse eat through the cranium of his cellmate?'

"'Yes,' she replied calmly."

The Institute of Medicine saw the same presentation before issuing its report but rejected it as unconvincing.

Gerberding was polite but noncommital, Kirby writes. As she left, she said, "I am not afraid of controversy, and I am determined to follow the science."

Call it coincidence, but it's striking how much less dismissive of thimerosal concerns the CDC is these days, compared with the Institute of Medicine and others.

The National Network for Immunization Information, for instance, launched a pre-emptive broadside against "Evidence of Harm." That group represents the mainstream medical establishment, including the American Academy of Pediatrics, the American Nurses Association and the American Academy of Family Physicians. Their members, it should be noted, were among those who administered the vaccines in question on the recommendation of the CDC.
"Warning: Controversial vaccine book," the NNII statement was headlined. "Reporter David Kirby has recently written a book ... purporting that there is a link between thimerosal and autism and other developmental disorders."

That's a bit of an overstatement, considering the first two sentences of Kirby's book: "Does mercury in vaccines cause autism in children? Anyone hoping to find proof that it does in the pages that follow is advised to put this book down now."

The NNII asserted that "extensive evidence shows no link between vaccines and neurodevelopmental disorders, including autism. This evidence is based on well-established scientific studies.

"Continued attempts to link vaccines and autism run the risk of diverting attention away from efforts to understand the cause or causes of autism," the group said.

The CDC also issued a release on Kirby's book. Its thrust was different -- that the book is a "look back" to a time when thimerosal was in childhood vaccines.

"Given the historical nature of the book, it is important to emphasize that today, with the exception of some flu vaccines, none of the vaccines used in the U.S. to protect preschool children against 12 infectious diseases contain thimerosal as a preservative.

"As the IOM concluded in a recent report, the vast majority of studies, which have involved hundreds of thousands of children in a number of countries, have failed to find any association between exposure to thimerosal in vaccines and autism; that is, they have failed to find any evidence of harm," the CDC said.

It's worth noting the contrasts in the statement. The doctors and nurses group says "extensive evidence shows no link." Dr. McCormick at the Institute of Medicine says "overwhelming evidence" shows no link.

But the CDC, which unlike such groups has ongoing access to the actual data, merely states that studies so far "have failed to find any association."

"CDC continues to support research related to autism," the statement said, "including studies designed to examine the possible causal association between autism and other possible environmental causes, including thimerosal-containing vaccines. ... Research in these areas is ongoing."

Ongoing research that includes thimerosal as a possible cause of autism? Supported by the CDC?
Put simply, the CDC isn't ruling out anything -- contrary to the Institute of Medicine's declaration that more research on thimerosal is a waste of money, contrary to the medical establishment's pronouncement that continuing to look could cause harm.

Consider Gerberding's comments April 28, 2004, at a House subcommittee hearing: "We don't have the evidence to show that the thimerosal preservative is a risk, but you know we have an open mind about that."

Apparently the Institute of Medicine's findings three weeks later didn't completely reassure her, because this February -- almost a year after the IOM report -- she said the same thing in an interview with NBC.

"Right now, the scientific evidence doesn't provide any framework for concluding that thimerosal or immunizations in any way affect autism," she said. "But we have to have an open mind about that."

An open mind, not a closed door. Ongoing research, not ending research. That's quite a difference. Experts who are certain thimerosal didn't cause the autism epidemic may want to have a word with Dr. Gerberding.

This ongoing series on the roots and rise of autism aims to be interactive with readers and will take note of comment, criticism and suggestions. E-mail: dolmsted@upi.com
Copyright 2005 by United Press International

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Thursday, May 12, 2005

Mercury restriction for vaccines passes Missouri Legislature

JEFFERSON CITY, Mo. -- A bill that would restrict mercury levels in vaccines was sent to the governor on Wednesday, despite House changes that almost derailed the measure in the Senate.

As of April 1, 2007, the bill would bar immunizations containing more than one microgram of mercury per one-half milliliter dose of vaccine for children under age 3 and pregnant women. Mercury is sometimes used as a preservative in vaccines.

Some parents and advocates blame mercury for a nationwide rise in autism, hyperactivity and attention deficit disorder.

Pending the governor's signature, Missouri would become the third state, along with California and Iowa, to restrict a preservative called thimerosal -- which is 50 percent mercury by weight.

As originally passed by the Senate, the bill was limited to mercury restrictions. However, the House expanded the measure into an omnibus health-care bill.

Two changes that would undo some of the cuts to Medicaid eligibility the legislature enacted earlier this year prompted state Sen. Jason Crowell, a co-sponsor of the mercury bill, to oppose the final version. The Senate sent the measure to Gov. Matt Blunt on 29-2 vote.

"I greatly support the elimination of mercury in vaccines and have done as much as anyone and more than most to move that bill forward," said Crowell, R-Cape Girardeau. "But I was forced to make an up-or-down vote, and my conclusion was the bad outweighed the good. It was a tough call. Given that the legislative session ends Friday, the bill's primary sponsor, state Sen. Norma Champion, opted to accept the House version rather than forcing negotiations to remove some of the extra provisions and risk losing the bill."

"We should at least send a message that Missouri is concerned about mercury and immunizations," said Champion, R-Springfield.

State Sen. John Loudon, R-Ballwin, threatened to block a final vote because the House stripped tougher regulations of vaccines that he had sought.

"This bill captures the lowest amount of people and then provides every conceivable loophole," Loudon said. "It is truly and sincerely of no use."

After the measure was temporarily set aside, Loudon agreed to stand down.

Lujene Clark, a former nurse and parent of an autistic child, lobbied for the measure. The Carthage, Mo., woman said she is thankful that Champion and Crowell introduced the bill, she was "deeply disappointed" that the age restriction was placed at 3 years after pressure from the governor.

She said the "real hero" was Loudon, who said the state would continue to monitor the scientific evidence and revisit the issue in the future.

Other provisions added by the House include those related to newborn screenings, disseminating information regarding the exposure risks of hepatitis C and the issuance of birth and death certificates.

The bill is SB 74.

Staff writer Bob Miller contributed to this report.


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Tuesday, May 10, 2005

The Age of Autism: Witness


LEBANON, Pa., May 10 (UPI) -- Frank Noonan is a family doctor in Lancaster County. When I met him for lunch last Saturday, he was still in golfing togs from his weekly game -- "Saturdays are my 'I can breathe' day," he says. Even so, he stayed after our meal to meet a cancer patient who phoned him at the restaurant.

He's energetic, friendly, straightforward -- the kind of doctor people want.

People such as the Amish. As a family practitioner, Noonan sees patients of all ages. He combines traditional and alternative medicine in an "integrative" blend to suit the individual. The Amish like that approach -- they prefer to see just one doctor for all their care, and their first resort is herbs and supplements, not prescriptions and pills. For one thing, most don't have insurance.

Based on movies like "Witness" and the image of the Amish in horse-and-buggies, many people -- myself included -- assume they have virtually no contact with such outside influences as modern medicine.

Not so.

Noonan has been a doctor in Lancaster County nearly 25 years and about a third of his patients are Amish, making his Amish practice one of the area's largest. He has seen "thousands and thousands" of the county's 22,000 Amish residents and others who live nearby.

I found him through an Amish-Mennonite mother of an autistic child adopted from China. She told me she has seen almost no autism among the Amish, but that I should talk to Noonan because he has treated so many Amish for so long.

Based on my reporting so far, there is evidence of only three or possibly four Amish with autism in Lancaster County, where there should be dozens at the 1-in-166 prevalence in society at large. One of them is the adopted Chinese child. Another was described as having "a clear vaccine reaction" at 15 months, after which she became autistic. I have not met that child and can't vouch for that description.

When I called Noonan three weeks ago, he seemed surprised by my question about Amish autism but agreed to think about it, check around and tell me what he found. At lunch, Noonan said he hesitated to offer an opinion when I first called because it had never occurred to him.

But now, he said, he realized something.

"I have not seen autism with the Amish," Noonan told me. "And I say that having seen a ton of Amish patients. I may be able to think in all those years of maybe one case of (Amish) autism I've had."

"I've checked with some of my colleagues," he added, "and they all tell me it's very, very sporadic that we'll see a case of autism among the Amish."

From 2000 to 2003, Noonan also saw patients at the Wellness Center, which is operated by the Amish and Mennonites. About 90 percent of those patients are Amish, Noonan said, and he saw thousands of them. But still he saw no autism.

"Absolutely none, in the almost three years I was there. We would have seen it. It's not something they would hide. They're not like that."

Noonan said he sees "a fair amount of mental retardation among the Amish." A significant percentage of people with autism have mental retardation as well as severe speech and hearing problems. Wouldn't they show up on the radar of those who track and treat such issues?

And wouldn't autistic Amish see Noonan for the same inevitable illnesses and injuries that bring the rest of their family to him?

I tried various ways to find gaps in Noonan's account. Perhaps autistic Amish children were seeing pediatricians or specialists as opposed to family doctors ...

"The Amish don't go to specialists like we do," he responded. "The Amish go to family docs for all their pediatric care. So at least in Lancaster County, where I practice, almost all pediatrics among the Amish is done by family docs."

"You'll find all the other stuff, but we don't find the autism," Noonan said. "We're right in the heart of Amish country and seeing none. And that's just the way it is."

In my last column, I said this interview was a tipping point between absence-of-evidence (not finding many autistic Amish) and evidence-of-absence (finding there might not be many).

The case is still open, but does anyone disagree that Dr. Noonan makes a compelling witness?

(Researcher Kyle Pearson contributed to this story.)

This series on the roots and rise of autism aims to be interactive with readers and will take note of comments, criticism and suggestions. e-mail: dolmsted@upi.com

Copyright 2005 by United Press International. All Rights Reserved.

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Monday, May 09, 2005

The Age of Autism: Absence of evidence


Lebanon, PA, May. 9 (UPI)
-- After several weeks of looking, the prevalence of autism among the central Pennsylvania Amish still appears remarkably low, and the few cases I have found suggest an ominous pattern.

In two columns last month I asked, "Where are the autistic Amish?"

My search encompassed Lancaster County, heart of Pennsylvania Dutch country, and I obtained a tentative answer. After inquiring widely, these three cases emerged:

--a girl, age 3, adopted from China by an Amish-Mennonite family;

--a girl of about 8, described by the mother of the first child as a clear vaccine reaction at 15 months (a very small percentage of Amish do vaccinate their children), and

--a boy of about 10.

Since then, I have become aware of possibly one more case in Lancaster County and a total of five more nationwide -- which will be the subject of a future column.

Meanwhile, there is the question of prevalence. There is no reason to be particularly interested in autism among the Amish -- unless it occurs much less frequently than normal. If it did, it would suggest either genetic immunity -- which is unlikely, because at least a handful of Amish are in fact autistic -- or lower exposure to something that, combined with genetic susceptibility, triggers autism.

In my view, the latter is more likely.

About 22,000 Amish live in Lancaster County, where they first put down roots almost 300 years ago after fleeing religious persecution in Germany. At the current rate of autism among the "English," as they call the rest of us, several dozen of them should be identifiably autistic.

My first Lancaster contacts basically fell into the "absence of evidence" category, which is intriguing, but establishes nothing. The well-known scientific axiom is, "absence of evidence is not evidence of absence."

In the absence-of-evidence category:

--"I've been an advocate for the past five years in Lancaster and I have yet to come across a case where an Amish family is struggling for services," said Jim Bouder of the Lancaster County Autism Support Group. "I haven't seen any."

--"There are a lot of other kids who have autism, but we haven't seen that in the Amish because they're not referring them," said Stu Symons, director of mental retardation and early intervention services for Lancaster County Mental Health/Mental Retardation, a public agency. "There's a lot of birth defects and other disabilities (among the Amish), but we haven't seen, necessarily, autism."

--"That's one of our head-scratchers," said another local person who works with autistic children.

The Amish-Mennonite mother with whom I spoke, Stacey-jean Inion of Leola, said the view from inside looking out is no different.

"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," Inion said. "In the Amish community, I simply don't find that."

Though all this seemed intriguing, it did not constitute proof of anything. Because of the insular and unusual nature of the Amish community, everyone outside might just be missing the necessary evidence.

Among the dozens of e-mail messages I read after publishing the previous articles, several made exactly that point.

"I do not know of any Amish or Mennonite children with autism," said one doctor in a neighboring county, "but it would be difficult to assess this because these families rarely come to medical care for that type of problem, nor do they use Early Intervention or IU (Intermediate Unit) services. Thus, the incidence of autism in that population is unknown."

One message board posting even suggested because there apparently have been no studies of Amish people with autism, they must be there.

"Proof? Evidence? Where is it written other than a newspaper article or forum message? A search for 'amish autism' on ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed only comes up with a 'No items found' message. You would think that anything that significant would actually be published."

You would think.

This past weekend, I traveled back to Pennsylvania and met with a person who gave me the best insights yet into autism in the Amish community here. What he had to say was the tipping point between absence-of-evidence and evidence-of-absence.

That will be the focus of the next column.


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@upi.com
Copyright 2005 by United Press International. All Rights Reserved.

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Saturday, May 07, 2005

The Age of Autism: Letter from Ibiza


Washington, DC, May. 6 (UPI) -- As part of United Press International's ongoing series on the roots and rise of autism, we invited readers to interact with us via e-mail. As a result, we have received loads of insightful, informative, sometimes critical comment; we printed a selection in a previous column and will make it a regular feature of the series.

One letter we found particularly interesting is from Alan G. Carter, who describes himself as a high-functioning autistic person.

We do not presume Mr. Carter speaks for anyone but himself, but his comments are worth sharing. We hope this encourages other people on the "autism spectrum" to share their views as well.

Mr. Carter's name is used with his permission.


I know you've attracted some negative responses from some within the autistic community, but I think the questions you are asking could lead somewhere useful because you really do seem to be keen to begin at the beginning.

So if I may, I'd like to offer a perspective from the point of view of a "high functioning" autistic person who is sympathetic to your approach, and who has spent many years pondering these issues in commercial contexts - before withdrawing a few years ago because conditions had got so bad it had become impossible to achieve anything useful and seriously health threatening to try. I think this will suggest a very different approach to the medical conceptualization that you have primarily been exposed to.

First off, I do not regard myself as disabled in any way. I'm very much aware of the cognitive differences between myself and the majority -- I've been coping with them for as long as I can remember - and I see no evidence of disability on my part at all. I shall speak plainly about how things look from my point of view in what follows. I think this is only fair, since some others are so forward as to call me a disease, and assert that I must be "cured" -- i.e. exterminated -- and expect to be applauded for this.

If you look into the matter, I think you'll find that what I'm about to say is echoed in psychoanalytical theory, the various spiritual traditions, the Deming approach to industrial quality which produced such spectacular results in post WWII Japan, and even in the writings of Ayn Rand. One book that I'd particularly suggest you look at is a small volume of management theory called "Narcissistic Process and Corporate Decay," by Prof. Howard S. Schwartz, New York University Press. Personally I don't agree with the mechanisms Prof. Schwartz proposes are in play, but the social phenomena he describes are certainly real.

I'm a software engineer, and I'm very good at it. Typically, problems start when there is a clearly stated objective that I must work towards along with others who are not "on the spectrum."

I look at the task in a holistic way, where no step is any more important than any other, since we must execute them all to complete the task. There are always areas of risk and ambiguity which we presently possess no proceduralized method for dealing with. These areas of difficulty can however be "herded" - much as I imagine you, as a professional writer, "herd" the pieces of your own product together.

There's an abstract "space" in which you shuffle your paragraphs and sentences around, as you simultaneously develop and express your conclusions. That's what I'm doing now as I write to you, and I imagine that to be able to write a whole article which hangs together in its parts and also as a whole, you must do something similar. (Has it occurred to you that to do your job, you may very well be "on the spectrum" yourself, whether or not your abilities and awareness have thus far been categorized and discounted with a "diagnosis"?)

So before I start, I must contemplate the whole task, running backwards and forwards in my mind until a derisked and viable course is apparent.

If I do not do this, I'm just stumbling around in the dark. I must then implement my creatively produced plan in a pedantic and rule following way, if I am to preserve the assurances the first, contemplative stage yielded. (The bits where a mathematician might say "in any case" and really mean "in all possible cases" rather than "if we ignore the issues".)

In contrast, my colleagues do not see that many steps ahead - or are not interested in doing so. Instead they are more concerned with acting out their "fitting in" with whatever random and ill-thought-out approach happens to emerge from a kind of chimpanzee jabbering session. This behaviour appears to be encouraged in schools, and is known as "taking turns and making points." The play-acting seems to be more important than the content of the "points" that are made.

So often we hear that the problem with ADHD children is that they "blurt" - no one every mentions that their swiftly produced answers are usually correct. To the teacher, maintaining the singsong matters more than the stated purpose of asking the question, but these highly intelligent children are responding sincerely and effectively to the stated purpose. For this they are labelled mentally retarded. Similarly the wretched glancing from side to side as my colleagues change their nonsense in mid-sentence, depending on the threatening grimaces of others, indicates the lack of rigour and sincerity in their speech.

I can do creativity, and I can follow the letter as well as the spirit of rules. All too often, I find that my colleagues do not even attempt to do either.

There's an element of asinine uniformity in my colleagues' behaviour - even in the phrases used to celebrate it. "Taking turns and making points." "Looking professional and playing roles." "Being very clever and playing games." "La di da di da and da di da."

There's a stage when they "all-agree" a blatantly doomed approach. I point out the logical inconsistencies in their plan, but I find that they don't have sufficient attention spans to think ahead more than a couple of steps. Instead of making an effort to follow, they commence unpleasant jeering, subject-changing avoidance behaviors. Sometimes, they announce that I am mentally weak, that I "just don't get it," and am unable to keep up with their cleverness. They seem to believe that it is I, not they, who is deficient in attention span. Worse, this deeply habituated evasiveness prevents them from ever learning from their mistakes. Hence the high proportion of software projects which run vastly over budget if they are ever implemented at all.

Then they start play-acting the implementation stage. Here, the objective also seems to be closely aligned with what happens in schools.

The idea is not to get a result, but to fudge, pass the buck, do or say anything that will pacify an unthinking "teacher" figure who is looking for a shallow outward "seeming" of work, without actually doing any work. When I question them, they all seem to harbour a belief that anyone who approaches the job with a sincere intent to complete it is an imbecile. They certainly don't look forward to the natural high that comes from seeing a beautiful system working as intended.

A typical phrase used at this time is, "Oh just put something and get on". Now what on earth is the point of "getting on" when one knows one has already taken a wrong turn - even done so deliberately? There is no point unless the intent is to at all times (until the project is canceled as a failure) maintain a sham of work that is visible from a distance (even if no-one is looking) rather than getting a result.

I know that I often find the noise of randomly shouted falsehoods, incessant subject changing, attempted bullying and so on to be very, very difficult to cope with. Add the hideous flicker of florescent lights, the perpetually ringing telephones in the open plan offices and the constant need to be on the lookout for insincere sneakiness, and the workplace can be a very unpleasant and overwhelming place to be.

It is certainly no fit environment for anyone to do productive work - but actually productive work is not the point. I often find myself "stimming" - rubbing my hands rhythmically backwards and forwards over my scalp, focussing on the regularity and groundedness of the feeling, to drown out the insincere insanity around me and giving myself some emotional support. I am not surprised that others find themselves banging their heads against the wall.

The situation is getting much, much worse with every year that passes.

This is the context in which the demonization of those who "fail to comply" with society going down the plughole is occurring. Do you believe that the 20th century would have known no totalitarianism if just a few people with names like Hitler, Stalin and McCarthy had not been born? Or that to make a Belsen guard it is necessary to do any more than take Jo Public out of the supermarket and stuff her into an SS uniform?

There's plenty of evidence that many of us "on the spectrum" have great abilities in any subject found in nature - except the "ability" to self-delude and behave in this nihilistic, herdlike way. The only thing we "fail" to do is deny reality for "social" reasons.

Many of us express our profound emotional distress in extreme ways because we are profoundly emotionally distressed by the madness and bullying to which we are subjected. How easy it is to assert that we have no emotions because we do not parade false affect, and have nothing to be distressed about because the world is almost at the point of total perfection. In fact, I believe the developed world is nearing the point of total collapse.

The modern affliction of adrenaline addiction offers a model of what I think is going on. These days some people have lots of leisure time, and some of them spend too much time doing exciting sports. They actually get hooked on raised adrenaline levels, and when their adrenaline level drops, withdrawal drives them to do dangerous things to raise it again.

They are not aware that they are seeing things in a distorted way, and that parachuting off buildings is something they would not normally choose to do.

To my mind, it's possible that most people are vulnerable to a (likely neurochemical) form of madness which can be induced by joining in with group behaviors in a manner similar to adrenaline addiction, but with

boredom as the behavioral extreme where they should not spend too much time. For various different reasons those of us "on the spectrum" are immune to this. We therefore retain the human normal faculties which are

everybody's birthright, experience great distress from what we see going on with our clear vision, and yet we are categorized, demonized and persecuted by the herd, particularly at times of maximal insanity.

The disease of the herd comes and goes in waves, improving after a period of maximal delusion has caused an economic collapse and war, then steadily worsening during the reconstruction ... until the next collapse.

Because machines now do so much of the work, the population of the developed world has been freed up to make this the deepest trough in history.

We are already deeply into the next Dark Age, but thanks to the machines most people haven't noticed yet. The slightest deviation from regularized herd madness is now quite intolerable, bureaucrats, teachers, and medical staff are the most ritualized and so bored and so herdlike people of all, and this is the context in which the epidemic of autism, Asperger's and ADHD diagnosis is occurring.

Even so, I am optimistic. This has been going on for a long time -- probably thousands of years, since we first invented division of labor and the first humans to go gaga fell into their group hypnotic disease state. I reckon we retain some awareness of this in our legends of the "Fall." Certainly something caused us to lose all our history and culture prior to around 6000 years ago. Perhaps the way out is through a time of maximal madness, when the insanity will become evident to even the most blinkered, even as they physically collapse from the stress of it all. Perhaps, as Dante described in "The Inferno," the road out of Hell is found in the deepest and most terrible part of it.

A full description of this viewpoint, as criticized and improved by many others who can see it too, is online at: reciprocality.org/thirdage.

Perhaps we who are "on the spectrum" are like miners' canaries, and you'd better get out of the mine now - because the canaries have fallen off their perches.

Yours sincerely,

Alan G. Carter

Ibiza, Spain


This article is the fifth of seven in a series UPI published earlier this year.


The Age of Autism aims to be interactive with readers and will take heed of comment, criticism and suggestions. E-mail: dolmsted@upi.com

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Thursday, May 05, 2005

The Age of Autism: Mercury in the air


Washington, DC, May. 5 (UPI) -- A new study has found a possible link between higher mercury emissions and higher rates of autism.

The study, accepted for publication in the peer-reviewed journal Health and Place, looked for an association in Texas between rates of autism, special education services and levels of mercury released into the environment.

"There was a significant increase," according to the study. "On average, for each 1,000 pounds of environmentally released mercury, there was a 43 percent increase in the rate of special education services and a 61 percent increase in the rate of autism."

The Bush administration is announcing a new proposal to control mercury emissions that has already stirred controversy.

The study's lead author, Raymond F. Palmer, an associate professor at the University of Texas Health Science Center in San Antonio, cautioned the findings are limited, but added they should prompt more research. The following is a transcript of an interview United Press International conducted with last March:

Q. Will you describe the study in layman's terms?

A. I think it's the first study to look at total legal amounts of released mercury from different sources of industry, and it's a relationship between that and developmental disorders and special education rates at the general population level.

Q. Also, autism has really not been looked at as part of this picture of mercury in the environment.

A. Right, it's the first one to look at autism in relationship with it. Now this is only an associational study, and there are some limits to this study, but it's a good starting point to look at this issue -- a first jumping-off point where you could say there's an association here.

There's a hypothesis that mercury is associated with autism. This just supports that general hypothesis, but it in no way confirms it -- the findings that higher emissions of mercury are related to higher rates of autism.

Q. When you say there's a hypothesis, are you referring to thimerosal (the ethyl mercury preservative that was used in childhood vaccines through the 1990s)?

A. Right. And that's mercury. That's just another form of mercury.

Q. Now what critics would say is that there is no evidence that ethyl mercury in vaccines can do that kind of damage. Whereas environmental mercury is a different kind entirely and has known toxic effects on humans.

A. That gap is starting to close because there are some studies starting to show that ethyl (mercury in thimerosal) is as toxic.

I think what the critics would say is this (study) is an ecological association, it's cross-sectional, meaning it's at a point in time. And then being ecological, you cannot infer anything at the individual level. So anybody who really wants to rip into this can.

But if you have a hunch about a relationship as serious as this and you go investigating it and (find an association) at this level, it gives you confidence to move on to the next level.

Q. What would the next level be?

A. You'd want maybe to look at the association over time. We have some data on that, too, and that's our next step. We're working on that paper right now -- levels of mercury related with a change in autism over time, not just the prevalence rate at one specific point.

Q. I understand you've also looked for an association between mercury emissions and autism at the national level?

A. That's an unpublished manuscript. But the data that I have at the states level, the 50 states, is consistent with the same idea. States that are reporting the highest levels of mercury emissions also have the highest rates of developmental disorders including autism. I'm still trying to get that one published.

Q. New mercury-emissions standards are being announced by the Bush administration. Some people say they don't go far enough. Does your study have implications for this issue?

A. I would say that it does suggest that further study has to be done. Nobody really knows the long-term effects of low-dose mercury exposure. I would think this is a serious enough issue that we would want politicians to look at it, given that the substance is such a toxic element.

Q. I understand that in doing your study you came across a possible correlation between autism rates and an old mercury mine?

A. We were also mapping this relationship in counties of Texas, and we identified the counties with the highest levels of autism and the highest mercury rates.

One county that stood out, Brewster County, didn't have very much mercury reported to the TRI (Toxic Release Inventory Program of the Environmental Protection Agency). But it did have high autism rates.

So we were wondering about that and found that they had historically been one of the top mercury mines in the nation.

Q. How could an old mercury mine have any effect on autism rates?

A. (Perhaps because) it just stays in the environment forever. We don't know.

The other thing about the study, the criticism, is that we're just inferring exposure because of the release (of mercury emissions). So again it's hard to say that there's individual-level exposure. We're talking about potential for exposure.

I think it's an important study to lend support to further investigation. Why not? Why not investigate it more? What do we have to lose?

Q. Does that apply to the mercury in vaccines as well? The Institute of Medicine has rejected that idea and said research money should be spent in more promising areas.

A. I think if you look at everything in (terms of) total toxic load, thimerosal could just be another source. If you have it in your environment, and you're also getting it in, say, you're mother's diet, and fish, and also through your immunization schedule, that's just one source. And the environmentally released mercury is also just one source.

Q. Could other heavy metals be playing a role here?

A. There are some studies showing that other pollutants could potentiate the action of mercury. Like aluminum, like PCBs, pesticides. The point is, we're at this stage of investigation where nobody really knows.


This article is the fifth of seven in a series UPI published earlier this year.


The Age of Autism aims to be interactive with readers and will take heed of comment, criticism and suggestions. E-mail: dolmsted@upi.com

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The Age of Autism: Backward


Washington, DC, May. 4 (UPI) -- When Leo Kanner first identified autism as a unique developmental disorder in 1943, he was certain it was present from birth.

"This is not, as in schizophrenic children or adults, a departure from an initially present relationship," Kanner wrote. "It is not a 'withdrawal' from formerly existing participation. There is from the start an extreme autistic aloneness."

Almost 30 years later, in a 1972 speech, Kanner was of the same mind: "I didn't find that withdrawal was a proper term because you withdrew from something where you were before. These children had never been there."

Not emphatic enough for you? Kanner declared these children were "pure-culture examples" -- as in a closely observed petri dish -- "of inborn autistic disturbances."

Certain is not a synonym for correct, however, and now there are signs Kanner was wrong -- or at least not totally persuasive -- about that. Re-evaluating his 11 case studies of children born from 1931 to 1938, there is ample reason to wonder whether some of them developed autism after a period of normal development.

Take Richard M., born in November 1937.

"I can't be sure just when he stopped the imitation of word sounds," his mother wrote when he was almost 3. "It seems that he has gone backward mentally gradually for the last two years."

Or Elaine C., born in February 1932.

"She took feedings well, stood up at 7 months and walked at less than a year. She could say four words at the end of her first year, but made no progress in linguistic development for the following four years."

Four words at the end of the first year is about right for normally developing babies. No words for the next four years, obviously, is not.

Both Elaine and Richard were "there" before age 1, it seems, then went backward -- they withdrew, to use the word Kanner would not.

The term for that is regression, and today children who at first develop normally but become autistic by 36 months are diagnosed with regressive autism. Yet few associate that sequence with any of Kanner's original cases, because he was so definite their autism was present from birth.

What difference would it make if Kanner used too broad a brush to paint every single case as innate? It would make a lot of difference, by raising the possibility that some factor triggered autism in these children after they were born, not before.

Earlier articles in this series tracked the natural history of autism. We looked at whether autism has always existed at a steady prevalence or, instead, began decisively among children born in the 1930s.

We found the "steady state" theory hard to reconcile with the relatively few cases of autistic-style behavior reported before then; we calculated that at today's rate there should have been 369,000 hard-to-miss full-syndrome autistics alive in the United States in 1930. Where were they?

We also pointed to a striking link among the first 10 parents -- they had college educations and many had advanced degrees -- but we concluded this link weakened when the first 100 parents were analyzed.

Implication: It is plausible some new factor triggered autism in those college-educated families in the 1930s, and by the 1940s it was spreading to a broader range of families.

If some of Kanner's original cases were not autistic-from-birth but regressive -- acquired autism syndrome, in effect -- that would fit with a "new trigger" theory.

Kanner was brilliantly right in identifying autism -- which, by the way, he described as "a behavior pattern not known to me or anyone else theretofore." Kanner literally wrote the book on child psychiatry: "Child Psychiatry," published in 1934.

Like anyone studying a puzzling new phenomenon, however -- consider some of the misbegotten theories about AIDS -- not all of Kanner's observations or inferences have proven absolutely correct.

For instance, Kanner wrote that in the whole group of parents, "there are very few really warmhearted fathers and mothers. For the most part, the parents, grandparents and collaterals are persons strongly preoccupied with abstractions of a scientific, literary or artistic nature, and limited in genuine interest in people."

Kanner wondered whether "this fact" caused their children's autism, but his hypothesis it was present from birth gave him pause.

"The question arises whether or to what extent this fact has contributed to the condition of the children. The children's aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of early parental relations with our patients."

Hey -- so does this fact: Quite a few of those parents did not fit that cold unfeeling stereotype. Kanner individually described several: "a patient, even-tempered man ... a well-educated, kindly woman ... energetic and outgoing, fond of people and children." Another mother told him, "The thing that upsets me most is that I can't reach my baby." How unfeeling is that?

Kanner's gift for observation undercut his generalization, which since has been proven to have nothing to do with the risk of having an autistic child.

Trying to make sense of those first cases, we did the modern thing: We got a second opinion. We asked a pediatrician who has worked with dozens of autistic children and their families to read Kanner's original study. These were her main points:

--"I don't think he makes the case that they all were totally autistic from birth," she said. By the same token, given the limitations of the data reported in the case histories, we cannot be absolutely certain any were instances of regressive autism.

--Ironic, some of the children seem to have the milder Asperger's Disorder rather than classic "Kanner autism," which has come to signify the most severe cases.

--A number of these children had physical problems that should not be overlooked as possible clues to their developmental disorder. Those problems centered on food, digestion and illnesses that could suggest allergic reactions or a weakened immune system, the pediatrician pointed out.

--Donald T., the first patient Kanner saw in 1938, never had a normal appetite. "Eating has always been a problem with him," the father wrote. "Seeing children eating candy and ice cream has never been a temptation to him."

--"Following smallpox vaccination at 12 months," Richard M. "had an attack of diarrhea and fever from which he recovered in somewhat less than a week." This is the child whose mother recalled him going "backward" about that age.

--Barbara K. "nursed very poorly and was put on bottle after about a week. She quit taking any kind of nourishment at 3 months. She was tube-fed five times daily up to 1 year of age." Her eating eventually became normal.

--Herbert B. "vomited all food from birth through the third month," after which feeding progressed satisfactorily.

--John F.'s father said, "The main thing that worries me is the difficulty feeding. That is the essential thing, and second is the slowness in development. During the first days of life he did not take the breast satisfactorily. ... There is a long story of trying to get food down. We have tried everything under the sun."

Kanner noted that John had "frequent hospitalizations because of the feeding problem. No physical disorder was ever found, except the anterior fontanelle did not close until he was two-and-a-half. He suffered from repeated colds and otitis media (ear infections)."

What could these symptoms mean? Perhaps nothing, because babies tend to have all sorts of upsets, but the pediatrician said such illnesses and digestive ailments might increase a child's vulnerability to toxins by making them harder to eliminate.

In the reverse, they could signal if something was causing the child's autism, then it was disrupting their entire system.

It obviously is impossible to tell, but consider this: Today, the children diagnosed with the regressive kind of autism are usually the ones with the food allergies, digestive problems and long-running infections that suggest an immune system under siege and out of whack.

That is the kind of autism that now predominates. At first, autism at birth was much more frequent, but now regressive cases are several times more common, according to Bernard Rimland, a pioneer autism researcher.

Perhaps something did happen to some of Kanner's children after they were born in the 1930s -- and perhaps whatever that was is still happening.


This article is the fifth of seven in a series UPI published earlier this year.


The Age of Autism aims to be interactive with readers and will take heed of comment, criticism and suggestions. E-mail: dolmsted@upi.com

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Tuesday, May 03, 2005

The Age of Autism: Educated Guesses


Washington, DC, May. 2 (UPI) -- There was something similarly strange about the children who caught Leo Kanner's attention starting in 1938. He called their behavior "autistic."

There also was something strangely similar about the families they came from.

"There is one other very interesting common denominator in the backgrounds of these children. They all come of highly intelligent families," child psychiatrist Kanner wrote at the end of his historic study of 11 children, published in 1943.

He ticked off the fathers' occupations: four psychiatrists, one "brilliant lawyer," one chemist and law school graduate, one plant pathologist, one professor of forestry, one ad copywriter with a law degree, one mining engineer and one businessman.

"All but three of the families," Kanner wrote, "are represented either in 'Who's Who in America' or in 'American Men of Science,' or both."

Among the first 100 cases Kanner saw, he reported they "almost invariably came from intelligent and sophisticated stock." Of the 100 fathers, 96 were high school grads and, of those, 74 were college grads -- almost twice today's percentage. They included:

--31 businessmen

--12 engineers

--11 physicians

--10 lawyers

--8 tradesmen

--5 chemists

--5 military officers

--3 with a Ph.D. in science

--2 with a Ph.D. in the humanities.

Why this amazing "intellect effect" in the parents of children whose only common traits were language delay and deficit, "extreme aloneness" and "a desire for the preservation of sameness?" Kanner said those traits were present from birth: "These children had never been there."

The topic is not much discussed these days, as researchers hunt genetic causes and debate whether autism rose tenfold during the 1990s. Yet, the effect was so striking -- and, it turns out, so short-lived -- that surely it is a clue to the roots and rise of autism, the subject of this ongoing series.

"It is not easy to evaluate the fact that all of our patients have come of highly intelligent parents," Kanner acknowledged.


--Brilliant people (read: brainiacs who were a little weird to start with) hook up with other brilliant people and produce autistic (read: very weird) children. Verdict: unproven, unable to explain more than a fraction of children now affected.

--So-called refrigerator moms and dads, who obsess over their careers and their academic abstractions, coldly ignoring their child's development. Verdict: a damaging and discredited idea.

--Parents with the most education and money were most likely to bring their children to a specialist like Kanner. Verdict: plausible.

--Autism started in this stratum of society. Verdict: plausible.

Let's discuss the two open verdicts.

Four of those first 11 fathers were psychiatrists, likely to realize early on that something was clinically wrong with their children -- and likely to know about Kanner, a renowned psychiatrist at The Johns Hopkins University in Baltimore.

Interesting, though, one of the first autistic children appears to have been identified, not by her psychiatrist father, but by a doctor at the institution where she lived. Kanner disapprovingly remarked she had been "dumped in a state school for the feebleminded." This suggests, counter-intuitively, her father's medical career might be a risk factor for autism, not the reason she was referred to Kanner.

Regardless, the whole approach feels dubious and has a whiff of paternalism -- only the really top-drawer crowd would notice their child had a bizarre problem and get to the right doctor. It also is significant that Kanner, a brilliant observer, did not dismiss the "intellect effect" that way, but continued to puzzle over it.

Another correlation, less noticed, involves the mothers: nine of the first 10 also graduated from college, including a writer, a physician, a psychologist and a history teacher.

The 1940 U.S. Census reported just 3.8 percent of all women over 25 had completed four years of college. Yet, 90 percent of these mothers graduated from college? That is at least as startling as the fathers' attainments.

Looked at this way, what really connects these first families, including the husbands and wives, is more precise and less bizarre than an "intellect effect."

It is a college education, particularly the remarkable fact of the women's degrees.

This education effect does a better job of reconciling Kanner's view -- that autism was "very rare" and differed "markedly and uniquely from anything reported so far" -- with the much higher current autism rate of 30 to 40 children out of every 10,000. It does so by defining the parents of these early autistic children by what they did (going to college) instead of who they were (brainiacs).

It does, however, raise an unpleasant prospect: Some outside factor, unique to that remarkably homogenous group at that time, could have triggered autism in their children -- and then spread.

There are some early signs of exactly that spread: The one pair of parents without college educations constitute the 11th of Kanner's original 11 families.

Their son, Charles, was born in 1938; the other 10 children were born earlier in the decade. Kanner described the father as "a high school graduate and a clothing merchant ... a self-made, gentle, calm and placid person." His mother, whose education also stopped with high school, "has a successful business record, theatrical booking office in New York, (and is) of remarkable equanimity." (Say good night, weirdo-brainiac-refrigerator-mom theories.)

Look again at the list above of Kanner's 100 fathers, a list that incorporates the super-educated dads from the original study. Starting with Charles' parents, college and whatever it might imply no longer was the common thread.

Ten out of 10 of the original fathers were college graduates, followed by 64 of the next 90 -- still impressive, but a much lower percentage, no longer connecting all the families. Four did not even graduate from high school and eight were described as tradesmen.

There was not one businessman among the first 10 fathers, but there were 31 in the next 90. There were four physicians in the first 10, but just seven more in the next 90.

Demographics are always tricky to decipher, and it is easy to make too much of too little, but at some point all sorts of families began having autistic kids, and that ominous pattern may well be visible in the first 100 cases.

What were the conceivable risk factors for autism among the college-educated men and women of the 1920s and early 1930s and did they spread? We will pursue that in future columns.


Next: Clues from Kanner's kids.


This article is the third of seven in a series UPI published earlier this year.


The Age of Autism aims to be interactive with readers and will take heed of comment, criticism and suggestions. E-mail: dolmsted@upi.com

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