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  • The Age of Autism: Still’s and Pink’s

    By DAN OLMSTED, UPI Senior Editor   |   Nov. 9, 2006 at 7:37 PM

    WASHINGTON, Nov. 9 (UPI) — Does it matter that Donald T., the first child diagnosed with autism in the 1930s, also had a rare and mysterious autoimmune disorder that nearly killed him?

    The disorder, called Still’s disease, is a systemic form of juvenile rheumatoid arthritis (JRA) in which the immune system inexplicably attacks the body. The cause is unknown but might be some kind of outside exposure like a virus, experts say.

    As I’ve noted before, both Donald’s arthritis and his autism appeared to improve significantly after treatment with gold salts, then a standard remedy for JRA. But doctors at Johns Hopkins Hospital, where Donald and 10 other children were first diagnosed with the distinct disorder called autism, never seemed to notice the possible connection.

    They credited gold salts with curing his JRA. But they believed the improvement in his autistic symptoms was due to an unlettered but loving farm couple Donald went to live with near his hometown in Mississippi — at their suggestion. The clear implication was that Donald’s own parents — his father was a “brilliant” Yale-educated lawyer — might have contributed to his autism through poor parenting or some other family dynamic. That kind of mistaken (and fundamentally arrogant) assumption has haunted the search for autism’s cause ever since.

    But back to Still’s disease, which beset Donald in 1947 when he was 12 years old and living with that farm couple. According to my interview with his brother in 2004, Donald’s sudden illness was so baffling that even the Mayo Clinic couldn’t diagnose it. Instead, a doctor in a nearby town finally suggested JRA based on a conversation with Donald’s father, who told him, “It looks like Don’s getting ready to die.”

    Here’s how Leo Eisenberg of Johns Hopkins described it in the 1956 scientific paper I recently came across:

    “The (farm) boarding arrangement had to be terminated when Donald … developed an undiagnosed illness manifested by fever, chills, and joint pains. He became bedridden and developed joint contractures. On the basis of a tentative diagnosis of Still’s disease, he was placed empirically on gold therapy with marked improvement. …

    “The clinical improvement in his behavior, first observed during his rural placement, was accelerated during and after his illness and convalescence at home. He was able to enter and graduate from high school. At present he is doing well in his studies at a Junior College, where he was elected a class officer. He plans to attend a small local liberal arts college.”

    Put aside the glaring lack of interest in gold salts’ possible impact on Donald’s autism, and focus instead on how strange this situation was.

    Because Donald’s was the first case of autism ever formally diagnosed, trying to estimate its prevalence at the time is no easy thing. Suffice it to say that autistic children were rare; let’s use the widely accepted early figure of 1 in 10,000 children (it’s more like 40 per 10,000 today).

    Now, how rare is Still’s disease? It looks to be even rarer, but for simplicity’s sake let’s put it at 1 in 10,000 as well. Doing the math — 10,000 times 10,000 — suggests that having the two separate disorders just by chance is a 1-in-a-billion shot. Effectively, Donald would have been the only person in America in 1947 who just happened to have both.

    And on top of that, he’s autism’s Case 1?

    Oh, brother. This does not compute. In search of answers, I went back and looked up Still’s disease. It’s named for Sir George Frederic Still, an English physician who first described it in 1887. One of the characteristics was a peculiar, transient “salmon-pink” rash.

    That reminded me of something — Pink’s disease. Pink’s (also called Pink) was a mysterious and sometimes fatal affliction in children: “The symptoms include weepy red rash, peeling skin, lethargy, anaemia, sensitivity to light, respiratory distress and general ill health,” according to the Pink Disease Support Group. Other sources refer to the “joint pains.” It’s fatal in about a quarter of cases.

    And what caused Pink’s?

    “Pink Disease is babyhood mercury poisoning. Some babies are hyper-sensitive to mercury, and if those babies are exposed to mercury, they get Pink Disease. The most commonly used product containing mercury was teething powder, but other products frequently used on babies also contained mercury.

    “After it was discovered that mercury was the cause of Pink Disease in 1947, mercury was removed from all teething powders and Pink Disease became rare.”

    An intriguing article from 1943 in the Journal of Pediatrics is titled “Pink Disease (Infantile Acrodynia),” the formal name of the disorder. One section begins, “The Nervous Child and Pink Disease. — The manifestation of pink disease in older children … has received comparatively little attention by the English-speaking word. …

    “It is of interest that such children as these are disturbed emotionally; they are ‘nervous children’ and … they conform to the ‘nervous child’ syndrome. “

    “The nervous child.” I can’t help but remember that the first scientific report of autism, by Leo Kanner at Hopkins, was in a journal called … The Nervous Child. Nor can I forget how Donald’s brother described the impact of the gold salts: “The nervous condition he was formerly afflicted with was gone. The proclivity toward excitability and extreme nervousness had all but cleared up.”

    It was, he said, a “miraculous response to the medicine.”

    I’m not suggesting Donald had Pink’s disease. But I do wonder if his remarkable recovery across the board should have raised a lot more questions a long, long time ago.

  • The Age of Autism: None so blind

    By DAN OLMSTED, UPI Senior Editor   |   Oct. 24, 2006 at 5:35 PM

    WASHINGTON, Oct. 24 (UPI) — How long have we known — or should have known — that medical treatment might help thousands of autistic kids? A half century, it now appears.

    I recently came across a 1955 study titled “The Autistic Child in Adolescence,” by Dr. Leon Eisenberg of The Johns Hopkins Hospital in Baltimore. Eisenberg was a colleague of Leo Kanner, the child psychiatrist who first identified autism as a distinct disorder in 11 children in 1943.

    By 1955 there were 80 such cases in the Hopkins files; researchers managed to locate 63 of them. The results were not encouraging: Eisenberg wrote that only three “can be said to have achieved a good adjustment.”

    Here’s where it gets interesting: One of those three was the very first patient diagnosed at Hopkins by Leo Kanner — “Case 1: Donald T.” As readers of this column know, I located Donald T. and, in 2004, went to his Mississippi hometown in search of more information.

    Donald didn’t respond to my requests for an interview; I have never met him. But I talked to his brother, a lawyer in the same town where the family has lived for generations.

    The brother told an amazing story: At Kanner’s suggestion, Donald was living with a nearby farm couple when, in early adolescence, he was stricken with a baffling illness. Even the Mayo Clinic couldn’t diagnose it.

    Donald’s joints swelled up; he had high fevers; he couldn’t eat. His father told a family doctor in a nearby town: “It looks like Don’s getting ready to die.” Sight unseen, the doctor offered a possible diagnosis: A rare case of juvenile rheumatoid arthritis (JRA).

    His parents took Donald to the Campbell Clinic in Memphis, where he got a series of gold salts injections, the standard remedy of the day.

    The treatment was a spectacular success, his brother said. And to my astonishment, he wasn’t just talking about the arthritis symptoms, which cleared up except for one fused knuckle.

    “When he was finally released, the nervous condition he was formerly afflicted with was gone,” the brother said. “The proclivity toward excitability and extreme nervousness had all but cleared up.” Donald was able to attend high school, graduate from college, work at a bank, live on his own.

    A “good adjustment,” indeed. Or, as his brother put it, “a miraculous response to the medicine.”

    When I came across Leon Eisenberg’s 1955 paper recently on the Web site www.neurodiversity.com — which hosts a superb collection of early autism research — I was stunned to find that he mentioned the gold treatment. The description — though not the emphasis — exactly matched the brother’s account, starting with Donald’s placement with “a warm and unsophisticated farm couple without intellectual pretensions.” It’s worth quoting at length:

    “Donald remained in this rural setting for 3 years; moderate improvement was noted, though while on vacation with his parents during this period, his mother reported that his chief interest on the trip was to record carefully the mileage between towns.

    “The board arrangement had to be terminated when Donald, at 14, developed an undiagnosed illness manifested by fever, chills, and joint pains. He became bedridden and developed joint contractures. On the basis of a tentative diagnosis of Still’s disease (a form of JRA), he was placed empirically on gold therapy with marked improvement.

    “After 18 months he was once again ambulatory. He emerged with little residual deficit from a second episode of arthritis a year later. The clinical improvement in his behavior, first observed during his rural placement, was accelerated during and after his illness and convalescence at home. He was able to enter and graduate from high school. At present he is doing well in his studies at a Junior College, where he was elected a class officer.”

    Notice that while Eisenberg mentions gold therapy, he doesn’t connect it to Donald’s “accelerated” progress at the same time. Why not? Well, consider this: Two years later, in 1957, Eisenberg wrote an article titled “The Fathers of Autistic Children.”

    “They tend to be obsessive, detached and humorless individuals,” he said, repeating the now-discredited orthodoxy of the day. “Such interest as they have in the children is in their capacity of performing automata. … They are no less inadequate as husbands than they are as fathers. Work takes precedence over family life. Marriage seems mostly a convenient arrangement for meals and laundry.”

    And: “An unusually large number have college degrees, as do their wives.”

    Aha! Why are we not surprised that “a warm and unsophisticated farm couple without intellectual pretensions” gets credit for Donald’s progress, while a “miraculous response” to medical treatment is missed?

    Not for the last time, a family noticed something significant while the experts prattled on about their pet theories. When Leo Kanner looked back at those first cases in a 1972 paper, “Followup Study of Eleven Autistic Children Originally Reported in 1943,” he never even mentioned gold salts. Kanner credited Donald’s rare success — remember, only three out of 63 had good outcomes — to the farm environment that, not coincidentally, he had recommended.

    He wrote that Donald, “because of the intuitive wisdom of a tenant farm 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, is a regularly employed bank teller; while living at home, he takes part in a variety of community activities and has the respect of his fellow townspeople.”

    What a touching agrarian idyll. What a bunch of hooey.

    Until now, I thought Kanner and the rest of the medical establishment simply weren’t aware of Donald’s improvement following the gold salts treatment; otherwise, they would have followed up this very promising and obvious lead from the very first case.

    Now I don’t know what to think.

  • The Age of Autism: Many, many more

    By DAN OLMSTED, UPI Senior Editor   |   Oct. 16, 2006 at 5:13 PM

    WASHINGTON, Oct. 16 (UPI) — The debate over the cause or causes of autism has been hung up for years on a point that should have been settled by now: whether the rate is in fact increasing.

    This column long ago concluded that, yes, the autism rate has risen dramatically over the past couple of decades. What’s more, the disorder seemed to arise out of nowhere starting about 1930.

    Both those points are controversial, to say the least. If in fact autism went from essentially zero in 1930 to 1-in-every-166 kids today, the prime suspect would be some new harmful exposure, not merely better recognition of a genetic, highly heritable disorder.

    The issue can quickly get complicated: How do you define autism? How have the diagnostic boundaries changed? Is an autism diagnosis being substituted for mental retardation because it sounds less devastating or more, well, fashionable?

    But all this is not as hard to untangle as some parties would have you believe. In 1943 a Johns Hopkins child psychiatrist named Leo Kanner identified the syndrome in a landmark paper, “Autistic Disturbances of Affective Contact.” The 11 case histories he described among children born starting in 1931 were remarkably similar — and “markedly and uniquely” different from anything previously reported, Kanner said.

    Ultimately, a broader spectrum of pervasive developmental disorders was included — from the milder Asperger’s to Rett’s Syndrome, which affects girls, to Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

    The severe form first described by Kanner came to be known as “full-syndrome,” “classic” or simply “Kanner autism.”

    That easily identifiable disorder is what we want to compare. I’ve suggested the current incidence of Kanner autism is somewhere between 40 to 60 children per 10,000; when you add in the other disorders on the spectrum, it rises to 60 to 80 per 10,000.

    Of course, there is debate and uncertainty — but within fairly tight parameters. Dr. Deborah Hirtz of the National Institute of Neurological Disorders and Stroke — part of the National Institutes of Health — estimates that about 10 to 30 children per 10,000 have classic autism today, and a combined total of 30 to 60 have one of the pervasive developmental disorders.

    That’s slightly lower than my numbers, but on the same order of magnitude.

    Too bad, some say, we can’t match those up with reliable figures from before 1980; then we would know if we’re facing a real increase. The most frequent objection is the lack of a large, pre-1980 “prospective” study — one that followed thousands of kids and recorded which ones developed the classic signs of autism. That would be a fair basis for comparison.

    I’ve recently come across a 1975 study that does exactly that, although it was not the purpose of the research. The study was designed to look at bleeding during pregnancy as a risk factor for autism and childhood psychosis — and did find a correlation. To do so, it examined the computerized records of 30,000 kids — a huge sample — born between 1959 and 1965 at 14 university-affiliated medical centers. All the children got several neurological, psychological and speech and hearing exams by age 8.

    Here’s the key statement: “From this group 14 were selected as conforming to the syndrome of infantile autism.”

    That translates to 4.7 kids per 10,000, way lower than any measure of today’s rate. The researchers wrote that although they “make no claim to having identified every autistic child among the 30,000 children, the rate of 4.7 per 10,000” exactly matched another well-regarded study, “leading us to believe that most such children were included.”

    But what about kids who back then were mistakenly labeled schizophrenic or had other “pervasive” disorders that now would land them on the autism spectrum? Well, the researchers studied the records again and, this time, identified “additional children who, although not having the classical syndrome of infantile autism, were apparently psychotic. Six such children were found, all labeled by at least one observer as severely disturbed, psychotic-like, autistic, or childhood schizophrenic.”

    So let’s include them in our “autism spectrum.” That gives us 14 classically autistic kids, plus six more with some sort of severe developmental disorder, for a total of 20 kids out of 30,000.

    Again, the math is simple — that’s just 6.7 kids per 10,000, far below even the low-end estimate of 30 per 10,000 for all the spectrum disorders today cited by the NIH’s Hirtz.

    The study was published in the highly credible “Journal of Autism and Childhood Schizophrenia” in 1975. And get this: “Children with infantile autism and childhood psychosis were identified by the National Institute of Neurological Disease and Stroke Collaborative Pre-Natal Study.” That’s Hirtz’s institute.

    We’re talking apples and apples, and a lot more of them today than 35 or 40 years ago. The implications are as disturbing as they are (or should be) obvious.

  • The Age of Autism: Rattled regulators

    By DAN OLMSTED, UPI Senior Editor   |   Sept. 26, 2006 at 1:58 PM

    WASHINGTON, Sept. 26 (UPI) — A shakeup at the CDC and the shaky performance of the FDA raise some serious questions relevant to the debate over the huge rise in reported cases of autism.

    Both federal agencies are key to assuring Americans — and particularly those whose children receive an ever-increasing load of vaccines — that there is no relationship whatsoever between the shots and autism.

    But both agencies have come under fire this month in ways that make you wonder how much confidence to have in their overall performance.

    First, the Food and Drug Administration. The agency responsible for the safety and efficacy of prescription drugs got walloped by the prestigious, independent Institute of Medicine, whose “often damning” conclusions portrayed an agency “rife with internal squabbles and hobbled by underfinancing, poor management and outdated regulations,” according to a lead story in The New York Times.

    To be fair, the study was commissioned by the FDA itself, which said in a statement that “substantial work” to remedy the problems has already been done. But consider two of the IOM’s four main findings:

    — “There is a perception of crisis that has compromised the credibility of FDA and of the pharmaceutical industry.”

    — “FDA and the pharmaceutical industry do not consistently demonstrate accountability and transparency to the public by communicating safety concerns in a timely and effective fashion.”

    This column has pointed out several examples of that — including our series titled “Pox,” about concerns that the new, combined measles-mumps-rubella-chickenpox shot might be triggering autistic regression in susceptible children.

    Two children in small clinical trials of the four vaccines subsequently were diagnosed with autism. But manufacturer Merck & Co. acknowledged that the cases from Olympia, Wash., weren’t reported to the FDA until after the drug was approved last year.

    The FDA didn’t bother to respond to our questions about those cases — a lack of “accountability and transparency” of the first order. The FDA seems to have a siege mentality whereby legitimate questions about drug safety are sometimes treated as insults that are beneath comment.

    Perhaps, with the IOM report on the table, that will start to change.

    Now to the CDC. The agency both recommends the childhood immunization schedule and monitors vaccine safety.

    In July, U.S. Rep. Dave Weldon, R-Fla., introduced legislation to take the safety function away from the CDC. “There’s an enormous conflict of interest within the CDC and if we fail to move vaccine safety out of the CDC, public confidence in the safety of vaccines will continue to erode,” said Weldon, a medical doctor.

    Now a different kind of conflict is emerging at the CDC — over a sweeping reorganization instituted by its director, Dr. Julie Gerberding.

    “Exodus, morale shake CDC,” said the headline in the Sept. 10 story by Alison Young in the Atlanta Journal-Constitution.

    “An exodus of key leaders and scientists from the (CDC) has raised ‘great concern’ among five of the six former directors who led the agency over the past 40 years.”

    That concern was also raised recently on a CDC message blog. While staffers railed about the proposed changes and management style, one outsider posted his own critique. Here is part of it:

    “If you want to understand the source of the crisis at CDC, you might want to look in the mirror. …

    “What is the real performance crisis at CDC? … CDC is failing in its most critical public mission. … Speak to any school administrator, group of families or front line care providers and ask them what the state of health of America’s children is today. What do you think you’ll hear? I submit you would hear that we have the sickest generation of children that any of us have ever seen.

    “But the sickness is not coming from the roster of infectious diseases that all of you are programmed to consider the enemy. Rather, they are a long list of chronic, insidious but devastating conditions that are sapping the services system and turning schools and summer camps into medical distribution centers. Asthma, diabetes, ADD, ADHD, autism, PDD, obesity, life threatening food allergies, and the list goes on. Children and families are in crisis in large numbers.”

    It’s that crisis the shaky performance of the FDA and CDC may be obscuring. No amount of reorganization or reform will matter until they address it.

  • The Age of Autism: About those ‘old dads’

    By DAN OLMSTED, UPI Senior Editor   |   Sept. 6, 2006 at 6:23 PM

    WASHINGTON, Sept. 6 (UPI) — The study released this week that found older fathers more likely to have autistic children has created a media stir. But there may be less to the story than meets the eye.

    “Autism Risk Rises With Age Of Father — Large Study Finds Strong Correlation” was the headline on the top left of the Washington Post’s front page.

    It’s nice to see autism on the front page and, yes, the study drew from a large pool, “an enormous sample of 17-year-olds” in Israel over a period of six years in the 1980s, as the Post put it. The researchers were able to determine the age of both parents for 132,271 draft candidates.

    And yes, older men were found to have a greater risk of fathering an autistic child than men under 30.

    Yes, but: The study was done in another country, involving kids born 20 years ago when the autism rate was much lower. Plus, there’s something called the “confidence interval” — basically, the margin of error — in scientific studies, and it comes into play here. In a letter to Britain’s Daily Mail, researcher Clifford Miller wrote:

    “There were only 13 autistic children born to fathers 40 and over considered in the study — there were 128,000 children with fathers under 40 but only 4,000 with fathers over 40.”

    Given that not-so-enormous number in the key demographic, the margin of error in calculating the increased risk is … well, enormous.

    “The lowest risk figure of 2.65 times for fathers 40 and over fathering an autistic child is exactly the same as the highest risk figure for fathers between 30 and 39.”

    Those overlapping figures “could be used to argue that there is no significant difference between dads in their 30s and 40s,” said Mark Blaxill, a vice president of the advocacy group SafeMinds, which believes that an environmental factor — possibly the mercury in vaccinations — is behind the huge rise in U.S. cases over the past 20 years.

    Still, Blaxill calls the result “interesting” — “All data is good, in my view, and this is data.” He notes that previous studies of parental age and autism risk have had mixed findings. “If it’s a factor, it’s certainly not an overwhelmingly large one.”

    The most important issue is what the study appears to suggest: “Autism Study Hints at Genetics,” as the Wall Street Journal’s story put it. The idea is that spontaneous mutations in the dad’s genes would, as time goes on, raise the risk of autism-inducing errors.

    Yes, but: Even assuming larger, more current studies in the United States exactly replicated these findings, why would they hint at genes more than an environmental cause? The longer someone lives, the likelier they are to get all kinds of exposures that could affect their DNA. (Or, older parents could differ in some other way that would raise their child’s risk of autism.)

    This column recently has been highlighting a “chemical connection” that early researchers turned up, a link that was all but abandoned in favor of gene theories.

    One such study was conducted by Dr. Mary Coleman, who described a key finding in the 1976 book The Autistic Syndromes.

    “In the preconception history questionnaire filled out by both the father and the mother, there were two areas of marked difference between the parents of the autistic children and the parents of the controls. One of these areas was exposure to chemicals,” Coleman wrote. (The other was hypothyroidism.)

    Note — she was looking at “preconception” history, which could suggest some kind of genetic damage from chemical exposure that was passed on to the children in the form of autism. The age of the fathers was not recorded, but wouldn’t they get more such exposures as they got older — making the “chemical connection” even stronger? For career chemists, as some were, that is almost a given.

    “Clearly, this is an area where more prospective research is needed,” Coleman wrote. It still is.

    We’ve also pointed out a possible connection in the very first cases described in the medical literature — 11 children born in the 1930s — with new chemical compounds, plausibly including mercury-based fungicides. One of those 11 kids was the son of a plant pathologist, another the son of a forestry professor at a southern university, and a third grew up in an area being heavily planted with seedlings to create a national forest in Mississippi (there’s that southern forestry connection again — in fact, his home town is named Forest).

    A fourth was the son of a mining engineer. And the very first case to come to medical attention, at Johns Hopkins University in 1935, was the son of a 30-year-old chemist-attorney at the U.S. Patent Office. A chemist.

    Yet the tendency to see just about everything as powerful support for the “gene theory” is proving just about irresistible — even when the evidence at hand amounts to 13 children born to older fathers in Israel in the 1980s.

  • The Age of Autism: Something Wicked — 2

    By DAN OLMSTED, UPI Senior Editor   |   Aug. 24, 2006 at 4:46 PM

    WASHINGTON, Aug. 24 (UPI) — The idea of a “chemical connection” in many cases of autism arose during the 1970s and 1980s, then gave way to gene-based theories. But the time has come to revive it.

    The last column highlighted a study by Thomas Felicetti, now executive director of Beechwood Rehabilitation Services in Langhorne, Pa. As Felicetti described it in the journal Milieu Therapy in 1981, he compared the occupations of 20 parents of autistic children, 20 parents of retarded children and 20 parents of “normal” children who were friends and neighbors of those attending the Avalon School in Massachusetts where he taught at the time.

    “The results did, in fact, suggest a chemical connection,” he wrote. “Eight of the 37 known parents of the autistic children had sustained occupational exposure to chemicals prior to conception. Five were chemists and three worked in related fields. The exposed parents represent 21 percent of the autistic group. This compared to 2.7 percent of the retardation controls and 10 percent of the normal controls. The data, subjected to statistical analysis, demonstrated a chemical connection.

    “The results of this study point in the direction of chemical exposure as an etiological factor in the birth of autistic children.”

    What makes Felicetti’s study, though small, even more compelling is that it was designed to test earlier work by Dr. Mary Coleman.

    In the 1976 book “The Autistic Syndromes,” Coleman described her study of 78 autistic children in which she noticed “an unusual exposure of parents to chemicals in the preconception period.” Out of 78 autistic kids, 20 were from families with chemical exposure; four were from families where both parents had such exposures — seven out of eight of those parents as chemists. Still, Coleman worried that because the parents volunteered for the survey they might have been scientifically inclined, skewing the results toward careers like chemistry.

    Felicetti effectively confirmed the validity of her finding by selecting the participating parents himself.

    Coleman’s study has an interesting origin: It was suggested by Bernard Rimland, the pioneering figure whose 1964 book, “Infantile Autism,” established that parental behavior was not a cause of autism. In 1974, Coleman recounts, Rimland “and other members of the National Society for Autistic Children approached the Children’s Brain Research Clinic of Washington, D.C., to discuss the possibility of the Clinic studying their autistic children at the time of that annual meeting to be held in June.”

    Those children were the ones on whom the research was based. And a chemical connection was a key finding: “In the preconception history questionnaire filled out by both the father and the mother, there were two areas of marked difference between the parents of the autistic children and parents of the controls,” Coleman wrote. “One of these areas was exposure to chemicals.”

    Coleman wrote that “since the incidence of individuals exposed to chemicals in all related occupations in the United States is 1,059,000 in 91,000,000 or 1.1. percent of the population … to find that 25 percent of any sample has had chemical exposure is quite startling.

    “We feel it can not be dismissed because of the theoretical possibility that chemical toxins could affect genetic material prior to conception. Attempts to identify a particular chemical toxin to which many parents were consistently exposed in our sample failed; the parents recalled exposure to a great multitude and variety of chemical agents with no one chemical or classification of chemicals singled out in the data. Clearly, this is an area where more prospective research is needed.”

    (The other difference Coleman found in parents of autistic children was “the presence of hypothyroidism in the preconception history.”)

    And there’s more. In the 2002 book “Impact of Hazardous Chemicals on Public Health, Policy, and Service,” the authors review those studies and cite another — an unpublished manuscript by Marcus and Broman: “They found a higher incidence of occupations involving exposure to chemicals among the parents of children with autism.”

    And this column has reported on a possible chemical link in the very earliest cases of autism described in the literature — the 11 children in the landmark 1943 paper, “Autistic Disturbances of Affective Contact,” by Johns Hopkins University child psychiatrist Leo Kanner.

    One of the fathers was a plant pathologist; another was a forestry professor at a southern university; and the very first case, Donald T., grew up in Mississippi surrounded by land that was being replanted as a national forest in the early 1930s. A link suggested by Mark Blaxill of the advocacy group SafeMinds: possible exposure to commercial agriculture chemicals, in particular ethyl-mercury-based fungicides that came on the market around 1930.

    And two other parents among those first 11 families had relevant careers — one was a mining engineer and one was … a chemist.

    All this suggests that, at least in many cases, autism might be fundamentally an environmental illness — something coming from the outside-in to damage susceptible children. As Shakespeare put it, “Something wicked this way comes.”

    Felicetti told me he was struck by this consistently large percentage of children whose parents had an identifiable “chemical connection.” The question becomes: If we can identify this large a link simply by looking at glaringly evident parents’ professions, what is the real percentage of autism cases triggered by toxins including less obvious sources — most, perhaps?

    Yet the issue has been neglected in the rush to hunt down an “autism gene” that so far has yielded little to nothing.

    The idea that the age of autism arose and worsened along with harmful exposures is an idea whose time has come — about 75 years ago.

  • The Age of Autism: Something Wicked — 1

    By DAN OLMSTED, UPI Senior Editor   |   Aug. 16, 2006 at 12:00 PM

    WASHINGTON, Aug. 16 (UPI) — The Combating Autism Act passed by the U.S. Senate earlier this month includes millions of dollars for research into possible environmental causes of autism.

    It’s about time.

    Specifically, the bill authorizes $45 million to the National Institute of Environmental Health Sciences to spend over five years in clinical research on possible environmental factors.

    While that may sound like a good chunk of change, it’s minuscule compared with spending on (so far) fruitless searches for an “autism gene.”

    In previous installments of this column, I’ve sketched the natural history of the disorder beginning with child psychiatrist Leo Kanner’s landmark 1943 paper, “Autistic Disturbances of Affective Contact.”

    And I’ve suggested that from the very beginning, an environmental trigger — something harmful coming from the outside in — was alarmingly evident. As Macbeth put it, there’s reason to worry that “Something wicked this way comes.”

    Kanner identified 11 children with what he called the “markedly and uniquely” different disorder of autism. The first child in his case series was born in 1931, the last in 1938. While Kanner focused on the parents’ high educational attainment, we proposed a different way of connecting the dots:

    — Case 1, Donald T., grew up in Forest, Miss., which is smack in the middle of national forest land that was being replanted by the Civilian Conservation Corps during the early 1930s.

    — Case 2, Frederick W., was the son of a plant pathologist.

    — Case 3, Richard M., was the son of a forestry professor at a southern university.

    What might unite those cases? Mark Blaxill of the advocacy group SafeMinds suggested agricultural chemicals, in particular ethyl-mercury-based fungicides that came on the market about 1930. They were patented by Morris Kharasch, the “father of organic chemistry,” who also invented thimerosal, the ethyl-mercury-based vaccine preservative some blame for the huge rise in autism diagnoses.

    Whether you subscribe to the thimerosal theory or not, any environmental link is a worrisome prospect. And evidence for such a link has expanded over the years.

    Recently I had a fascinating conversation with Thomas Felicetti of Beechwood Rehabilitation Services of Langhorne, Pa. I came across work he had done more than a quarter-century ago that strongly suggested a “chemical connection” in autism.

    He summarized that work in the journal Milieu Therapy in 1981, and it is riveting to read in light of everything that has come after — namely, hundreds of thousands more cases of autism. Felicetti set up a study at the Avalon School in Massachusetts where he was teaching at the time.

    “The experimental design was rather simple and straightforward,” he recounted in the paper — comparing the occupations of 20 parents of autistic children, 20 parents of retarded children and 20 parents of “normal” children who were friends and neighbors of those attending the school.

    “The results did, in fact, suggest a chemical connection,” he wrote. “Eight of the 37 known parents of the autistic children had sustained occupational exposure to chemicals prior to conception. Five were chemists and three worked in related fields. The exposed parents represent 21 percent of the autistic group. This compared to 2.7 percent of the retardation controls and 10 percent of the normal controls. The data, subjected to statistical analysis, demonstrated a chemical connection.

    “The results of this study point in the direction of chemical exposure as an etiological factor in the birth of autistic children.”

    Felicetti is quick to acknowledge that such a small study was not definitive. “This particular study was occupations, and it was all different occupations,” he told me. “There were chemists, there were chemical assistants who would suck chemicals through pipettes in those days. There were roof tarrers who were exposed to chemicals through the roof tar. A variety of occupations.

    “But again that’s as far as I went with it. It was a pretty good study but suggestive — because we couldn’t find any particular chemical and because we only looked at occupations.”

    But it’s worth coming to a full stop at his simple and straightforward conclusion that a “chemical connection” was evident in the etiology of autism. Plus, he was building on earlier work that already suggested such a connection (more on that in an upcoming column). And further disturbing studies have followed.

    It’s also significant that the study tried to roughly control for “occupational status” — “It did try to have the control groups of equal occupation and social class,” Felicetti said. Contrary to all the speculation that brainpower and education correlate with autistic offspring, job status had nothing to do with it — roof tarrers are not perched atop the economic ladder, so to speak.

    The key was the job itself and its exposure to chemicals. Felicetti told me the plant pathologist and forestry professor from Leo Kanner’s 1943 case studies also would have met his test for occupations with chemical exposure.

    So yes, maybe Kanner’s kids had especially bright parents — but maybe they were up to their elbows in mercury fungicides, and Lord knows what else, before anyone knew how dangerous that was. (Perhaps fittingly, Kanner said the forestry professor was “very much immersed in his work.”)

    One of Felicetti’s observations in the 1981 article is haunting: “It is especially ironic that many of the parents of the autistic youngsters in our study could not specify the nature of the chemical agents. One can only speculate that they had blind faith in the safety precautions of the plants and in the reassurances of their employers. …

    “We seem to be coming out of an era when individuals routinely assume that occupational exposure to a wide variety of chemicals is a safe pastime. However, … research indicates this awakening may be too late for substantial numbers of people and for many future generations.”

  • The Age of Autism: ‘The first casualty’

    By DAN OLMSTED, UPI Senior Editor   |   July 28, 2006 at 3:39 PM

    WASHINGTON, July 27 (UPI) — A medical doctor in the U.S. House of Representatives delivered a harsh judgment this week on public health authorities whose job is making sure vaccinations are as safe as humanly possible.

    “Federal agencies charged with overseeing vaccine safety research have failed,” said Rep. David Weldon, R-Fla. “They have failed to provide sufficient resources for vaccine safety research. They have failed to fund extramural research. And, they have failed to free themselves from conflicts of interest that serve to undermine confidence in the safety of vaccines.

    “The American public deserves better, and increasingly parents and the public at large are demanding better.”

    Weldon concentrated his fire on the Centers for Disease Control and Prevention, which recommends the childhood immunization schedule through its Advisory Committee on Immunization Practices — and has conducted numerous studies that find no association between vaccines and serious health problems, particularly autism.

    But Weldon said the federal government in toto has failed to do its job.

    “Several issues relating to vaccine safety have persisted for years. The response from public health authorities has been largely defensive from the outset, and the studies plagued by conflicts of interest.”

    It should be noted the CDC stands behind its research and that last year it separated its Immunization Safety Office from the National Immunization Program. Weldon says that’s simply not enough to ensure impartial, aggressive investigation.

    Weldon introduced a bill — co-sponsored by Rep. Carolyn Maloney, D-N.Y. — that would create a new agency of vaccine safety that reports to the secretary of health and human services; require research to be independent of any vaccine-related decisions; and establish an 18-member advisory committee to create a vaccine research agenda. At least one-third of the committee would be made up of people with vaccine injuries or a vaccine-injured child.

    Given the realities of the legislative calendar, Weldon told me, he’s hoping to build support and hold hearings this fall on the measure and re-introduce it in the new Congress that convenes in January.

    Weldon’s approach is wide-ranging. For one thing, he’s not putting all his eggs in the mercury-equals-autism basket, so to speak — he’s not asking for more research solely to determine whether the mercury-based preservative thimerosal triggered a huge rise in autism diagnoses in the 1990s.

    While that question has been the focus of attention — and properly so, given the government’s own decision to phase out thimerosal from routine childhood immunizations beginning in 1999 — there is the prospect that other vaccine ingredients, and other side effects, may be insidiously at work.

    “There are unresolved questions about the MMR (measles-mumps-rubella) vaccine that arose in 1998 that should be fully investigated,” Weldon said.

    Indeed, this column recently reported on a cluster of cases in Olympia, Wash., that suggest a possible risk of autism from getting MMR and chickenpox shots too close together in a susceptible subset of children.

    One of the children diagnosed with autism was in a clinical trial of a new vaccine combining all four of those live-virus vaccines, including 10 times as much chickenpox component as the standalone chickenpox vaccine. The manufacturer, Merck & Co., acknowledged that case — and another from a similar trial in Olympia involving an experimental chickenpox vaccine given at the same time as the MMR — was not reported to the FDA until March.

    That was the same month we first inquired about the cases — and six months after the new vaccine, called ProQuad, was approved by the FDA for all children 12 months to 12 years old.

    Merck, like other vaccine manufacturers, mainstream medical groups and public health authorities, says there is no association between vaccines and autism. Weldon’s bill would put that assertion to the test — without the conflicts he says make such assurances suspect.

    Beyond autism, a range of concerns are “out there” about the childhood immunization schedule, which has expanded greatly over the past two decades and now includes a Hepatitis B shot on the day of birth and the prospect of more combinations and components in coming years.

    Few argue against the basic premise of mass vaccination against deadly diseases. The legitimate public-policy question is whether the authorities have gotten the details wrong — vaccinating too soon against too many illnesses, not all of them life-threatening or likely to afflict children, and undertaking too little independent surveillance of possible unintended consequences.

    From that perspective, it was hard to ignore the convergence of events at the Capitol Wednesday morning — as Weldon spoke, members were awaiting the arrival of the Iraqi prime minister, Nouri al-Maliki, to address a joint session.

    In the new book “Fiasco” about the Iraq war by Washington Post Pentagon Correspondent Thomas E. Ricks, the failure of public officials to properly gauge the real risks and potential rewards of the invasion are laid out in devastating detail.

    “None of this was inevitable,” Ricks writes. “It was made possible only through the intellectual acrobatics of simultaneously ‘worst-casing’ the threat presented by Iraq and ‘best-casing’ the subsequent cost and difficulty of occupying the country.”

    That made me go back and dig out a paper titled “From Safety Last To Children First,” by Mark Blaxill of the group SafeMinds and Barbara Loe Fisher, president of the National Vaccine Information Center. It was submitted to a CDC panel on vaccine safety in 2004.

    “The obvious concern is that benefits may be overstated and that risks will be suppressed,” they wrote in terms that eerily echo Ricks’. And they made the war analogy explicit, citing “a mission of fighting a ‘war on disease’ that disregards the secondary and tertiary consequences of war and views innocent children as inevitable consequences.”

    “The language of conflict — the ‘war on disease,’ ‘combating the causes of epidemics,’ ‘fighting emerging infections’ — is closely connected to the language of military power and, of course, ‘Disease Control.’ History teaches us that when government officials are determined to fight a war, any war, truth can be the first casualty.”

    It would be ironic if the same patterns that led to a foreign policy “fiasco” were at work in domestic health policy. Weldon’s bill is a first step toward finding out — and making sure, if that did happen, it gets fixed before more casualties pile up.

  • The Age of Autism: ‘Amish bill’ introduced

    By DAN OLMSTED, UPI Senior Editor   |   July 28, 2006 at 2:20 PM

    WASHINGTON, July 28 (UPI) — For the second time this week, legislation aimed at determining whether vaccines are linked to an epidemic of unrecognized side effects has been introduced in Congress — this time as a direct result of reporting by Age of Autism.

    The new legislation, titled the Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2006, would order the National Institutes of Health to study “health outcomes, including autism,” in those two groups.

    In essence, the bill proposes the simplest way to exonerate vaccines as a cause of autism: If the autism rate is about the same in never-vaccinated children, vaccines are unlikely to play any role.

    Yet such a straightforward and potentially decisive study has never been done on American children. In the past, public-health officials have said such an approach would be impractical due to low numbers of never-vaccinated children, but this column found tens of thousands of such children — beginning with the Amish — in various locations in the United States.

    In our anecdotal and unscientific reporting, the rate of autism seemed strikingly lower in never-vaccinated children, although those findings cannot be considered conclusive or convincing. For that, a scientific study would be needed, as proposed in the new legislation.

    The bill is being co-sponsored by Reps. Carolyn Maloney, D-N.Y., and Tom Osborne, R-Neb. It seeks to determine whether there is any correlation between the increasing number of immunizations in recent years and the rise in “chronic, unexplained diseases such as autism, learning disabilities, and other neurological disorders” over the same time period.

    “Childhood immunizations greatly reduce human suffering from infectious disease, and I think it would be in the best interest of everyone if we definitively resolve parents’ questions about vaccines,” Maloney said in a statement.

    Maloney cited particular concern about the mercury-based vaccine preservative thimerosal, to which children were increasingly exposed beginning in the late 1980s. It was phased out starting in 1999 at the recommendation of public-health officials and the American Academy of Pediatrics.

    Subsequent studies have found no association between thimerosal and autism, but critics say those studies have been inadequate and beset by conflicts of interest. Nor have they compared vaccinated vs. unvaccinated populations, in part because officials say such groups are hard to find in a society where childhood immunizations are routine — and mostly mandatory for school attendance.

    “In this country we have very high levels of vaccination,” CDC Director Dr. Julie Gerberding told Age of Autism at a news conference last year. While “such studies could be done and should be done,” she suggested, the obstacles might be overwhelming.

    But this column identified several groups that might fit the bill — from the Amish in Pennsylvania Dutch country to homeschooled children to patients of a Chicago family practice.

    “I have not seen autism with the Amish,” said Dr. Frank Noonan, a family practitioner in Lancaster County, Pa., who has treated thousands of Amish for a quarter-century.

    “You’ll find all the other stuff, but we don’t find the autism. We’re right in the heart of Amish country and seeing none, and that’s just the way it is.”

    In Chicago, Homefirst Medical Services treats thousands of never-vaccinated children whose parents received exemptions through Illinois’ relatively permissive immunization policy. Homefirst’s medical director, Dr. Mayer Eisenstein, told us he is not aware of any cases of autism in never-vaccinated children; the national rate is 1 in 175, according to the Centers for Disease Control and Prevention.

    “We have a fairly large practice,” Eisenstein told us. “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.

    “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.”

    Dr. Jeff Bradstreet, a Florida family practitioner with ties to families who homeschool their children for religious reasons, told Age of Autism he has proposed such a study in that group.

    “I said I know I can tap into this community and find you large numbers of unvaccinated homeschooled,” said Bradstreet, “and we can do simple prevalence and incidence studies in them, and my gut reaction is that you’re going to see no autism in this group.”

    Osborne and Maloney said such examples undercut claims “there was not a big enough population to which we could compare the general vaccinated population. … The Maloney-Osborne legislation proposes comparing vaccinated populations with unvaccinated populations such as these.”

    Clearly, there are children with autism who have never been vaccinated. Moreover, even a much-lower rate of autism in never-vaccinated groups would not directly implicate vaccines as a cause — other factors could be at work. For instance, the Amish might have a genetic resistance to the disorder; children receiving alternative schooling or healthcare might have less exposure to other conceivable medical, environmental or lifestyle triggers.

    But just as clearly, such a study could be done, and the Maloney-Osborne bill proposes to do it.

    Maloney was co-sponsor of another bill introduced Wednesday with Rep. David Weldon, R-Fla. That bill would give responsibility for the nation’s vaccine safety to an independent agency outside the CDC. Weldon was harshly critical of the government’s monitoring of vaccines.

    The National Autism Association called the two bills “good news from Washington. NAA applauds Congresswoman Maloney in her continuing efforts to support families affected by autism with this new legislation and co-sponsorship of Congressman Weldon’s Vaccine Safety bill.”

    The group urged its members to ask their local representatives to support the legislation when they are back in their districts during the August congressional recess.

  • The Age of Autism: Anna’s last days — 2

    By DAN OLMSTED, UPI Senior Editor   |   July 14, 2006 at 6:24 PM

    WASHINGTON, July 14 (UPI) — The death of a 17-month-old Scottish girl named Anna Duncan has come at an inopportune moment for Britain’s health authorities.

    Late last month 30 top scientists warned in an open letter: “The time has come to draw a line under the question of any association between the MMR vaccine and autism. The UK’s children are in danger of serious illness or death if they are left unimmunised.”

    But Anna’s death raises another question: whether these same health authorities are digging deeply enough into reports of serious illness, death — and yes, autism — following MMR vaccination.

    The facts are still being determined in Anna’s case, but John Duncan said his daughter had been exposed to chickenpox at a party just before she got the combined measles-mumps-rubella shot. She broke out with classic chickenpox just days after the shot and died a week later — on Sunday, May 14 — from an apparent seizure.

    Duncan said that Anna had a runny nose when she got the MMR shot on April 26 and that his wife, Veronica, told the healthcare worker that Anna had been exposed to chickenpox. The response: No problem.

    John Duncan couldn’t disagree more, and neither could we. Our reporting suggests too many viruses — from simultaneous live-virus vaccines, viral infections or some combination thereof — may be a very big problem in very young children. The Age of Autism series Pox, which by happenstance ran at the same time as Anna’s chickenpox exposure and illness, identified a cluster of autism cases in Olympia, Wash.

    The common thread: The children came from families with problematic chickenpox histories and got closely timed MMR and chickenpox vaccines at a young age, in most cases their 12-month checkups. (Chickenpox vaccine is recommended in the United States starting at 12 months; it is not administered in Britain.)

    If the observation were borne out in broader studies, it could mean combined live viruses in vaccines interact in a way that triggers autism in susceptible children.

    That’s not happening, according to public health authorities; they say a link between vaccines and autism has been ruled out.

    Yet as far as we can tell, there’s no research — zilch, nada — on whether inherited susceptibility to certain viruses could affect a child’s capacity to handle the weakened, or attenuated, versions of those viruses in vaccines.

    On top of that, we recently came across two old and overlooked but potentially disturbing studies. The first is titled “Viral Exposure and Autism,” by Eva Y. Deykin of the Harvard School of Public Health and Brian MacMahon, in a 1979 (yes, 1979) issue of the American Journal of Epidemiology.

    The authors looked at whether exposure to certain viruses, either in utero or in infancy, can be linked to autism. Here’s what they said:

    “The data indicates that total autistic symptomatology seems to be associated with prenatal viral experience with measles and mumps and with infancy illness or exposure to mumps and chickenpox.” The study also reported a widely recognized connection to prenatal rubella (German measles) exposure.

    The authors noted: “The proportion of cases that could be accounted for by any of these associations, even if causal, is small.”

    Still, a study a quarter-century ago saw a possible link between autism and viral exposures — the same viruses that are at issue in the Olympia cases and in Anna Duncan’s death.

    The second study is from a 1973 (yes, 1973) issue of The Lancet — a prestigious British medical journal that ought to carry buckets o’ credibility with that country’s medical authorities. It looked at SSPE, a delayed and often deadly brain infection that occurs in a small percentage of children who get measles.

    The authors, led by Roger Detels of the Division of Epidemiology at the UCLA School of Public Health, wanted to identify risk factors for developing the subsequent brain infection. The study matched 38 children who had SSPE with 38 who did not and came up with several interesting observations. Here is the key:

    “Among the 38 matched pairs, 6 patients had had chickenpox six months or less before measles. … This sequence did not occur among controls.”

    This amounts to a “significant excess of chickenpox associated with measles in SSPE patients,” the study concluded. “While this occurred in only six instances it is of note because of the relatively early age of clinical measles in patients versus controls, decreasing the likelihood of this sequence.”

    So, chickenpox followed by measles in young children might trigger brain damage and death? Troubling, indeed, in light of what happened to Anna Duncan.

    Let’s be clear — neither study is big enough to be definitive, and neither is about vaccine viruses. But both point to neurological consequences when those same viruses infect children at the same early ages, in particular when they occur close together.

    Interaction between viruses is in fact a well-known issue with vaccines, too. As we reported in our Pox series, a first-ever MMR-chickenpox vaccine from Merck & Co. called ProQuad has 10 times the standard dose of chickenpox virus in order to overcome a phenomenon called immune interference.

    In 2004 a Merck scientist said the chickenpox component of ProQuad might be “causing a local immune suppression and an increase in measles virus replication,” according to minutes from a meeting at the Centers for Disease Control and Prevention.

    One of the Olympia children diagnosed with autism had been in a clinical trial of ProQuad, which was approved by the U.S. Food and Drug Administration last September.

    The Olympia cases, Anna Duncan’s death and the two 1970s studies belong to what I call a “canon of caution” about viruses, live-virus vaccines and brain damage — and regrettably it is getting larger every day. A parallel case is also in the news in Britain: In January, an 18-month-old named George Fisher died in his sleep 10 days after the MMR, and an inquest has just been postponed to gather more evidence; the parents blame the MMR.

    When scientists like the “U.K. 30” dismiss these anguished personal concerns, one wonders how thoroughly they have studied the canon themselves — or if they even know it exists. (A lawyer told me that when concerns began in Britain in the late 1990s about the MMR and autism, he begged government health officials to come look at the disturbing parental accounts he had compiled. They declined, he said.)

    You can adjust childhood immunization policy — say, separating the MMR components and giving them a year apart as some critics suggest — and still protect children from deadly epidemics. But you can’t adjust the outcome of a fatal seizure.

    Those in charge need to demonstrate they are as concerned about the health of every single child who gets a shot as they are about “herd immunity.” That, ironically, is the only real way to restore Britons’ flagging confidence in vaccines and head off the return of dangerous diseases.

    And that would be a fitting legacy for Anna Duncan.