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By DAN OLMSTED, UPI Health Editor   |   Sept. 13, 2005 at 2:53 PM

Do parents know what they’re talking about? That has turned out to be a key question in the debate over autism and its possible causes and cures.

The most recent case in point: a study last month from the University of Washington Autism Center that examined first-birthday videos of infants later diagnosed with autism. Described as “the first objective evidence of regressive autism,” the study found marked differences in behavior between the first and second birthdays in children later diagnosed as regressive cases — in which an initial period of normal development is followed by a loss of social and communications skills.

Among other indicators, there was a clear decline in complex babbling and word use between the first and second birthdays. Those children babbled and used words much more frequently at age 1 than children later diagnosed with early, non-regressive autism.

In addition, children with regressive autism had other impairments that didn’t show up at age 1, but were clearly visible a year later. By their second birthdays, they were no longer pointing, responding to their names or looking at other people — all hallmarks of autism.

The study, published in the Archives of General Psychiatry, is interesting on its own terms, in that it documents regression for the first time, more than 60 years after autism was first recognized. (The researchers said about a quarter of autism cases are considered regressive.) Some previous studies have suggested that parents simply missed early signs the child was different from birth.

“Once again, this study provides objective evidence that parents are good reporters on what is happening with their children,” said Geraldine Dawson, director of the University of Washington Autism Center. “It underscores the importance of professionals to listen to parents.”

That is the larger significance of the study, because the current debate over autism can be characterized, with only slight exaggeration, as a debate between parents and professionals.

On one side are parents who say they have witnessed their children slip away from them at some point in the first two years of life. On the other are professionals who treat autism as a mostly genetic disorder present from birth.

That divide was captured in a recent New York Times front page headline: “On Autism’s Cause, It’s Parents Vs. Research.”

The idea that autism is always innate began with the very first cases. Leo Kanner, the leading child psychiatrist of his day, made the first autism diagnoses among 11 children born in the 1930s. He was emphatic that every one of those children was autistic from birth, as evidenced by a lack of interaction with parents; Kanner made a great deal of the children’s general lack of an anticipatory “shrug” or tensing when being picked up.

As outlined in a previous Age of Autism, a re-examination of those cases suggests Kanner may have painted them with too broad a brush. Looking at a new disorder that manifested so early in life, he might have interpreted all the evidence as suggesting autism was, as he put it, “inborn.” In that column, we asked a pediatrician who treats autistic children to review those first cases, and she told us she suspects several might, in fact, have been regressive.

In one of those cases, Kanner quoted the mother as saying the child lost touch beginning at about age one, but Kanner, the professional, appeared to discount that first-hand observation by the parent rather than adjust his hypothesis to account for it.

The University of Washington study is careful to point out it drew no conclusions about whether vaccines might have triggered autism in the regressive cases; even mentioning that issue shows how relevant the study might be to the debate over whether an environmental trigger — and in particular a mercury-based preservatives in vaccines — was responsible for a huge increase in autism diagnoses in the 1990s. The preservative was phased out of most childhood vaccines beginning in 1999.

Some parents say their children began regressing after suffering bad reactions to vaccines — fever, fitfulness, prolonged high-pitched screaming and sleeplessness. What’s more, some say their child’s autism improved — even disappeared — after treatments designed to augment the body’s ability to get rid of heavy metals like mercury.

Last month, we found the very first child diagnosed with autism, who still lives in the small Mississippi town where he was born in 1933. We learned Donald T., as Kanner identified him, had a life-threatening attack of juvenile arthritis in 1947, for which he was treated with gold salts. The arthritis cleared up — and his autistic symptoms improved — in what his brother described as a “miraculous response” to the medicine.

We couldn’t find any writings by Kanner that mention this incident, although Donald’s family clearly made a connection between the treatment and improvement in his autistic symptoms. Like the new University of Washington study, “it underscores the importance of professionals to listen to parents.”

If they did, perhaps we would know a lot more about autism.

By DAN OLMSTED, UPI Health Editor   |   Sept. 7, 2005 at 10:52 AM

Ginger Taylor of Los Angeles describes herself as “a thirty-something wife of the nicest man alive and mother to the two cutest boys ever. I am a former Johns Hopkins-educated family therapist, and also a Web designer. Most importantly I am a mom. Chandler, born in March ’02, is autistic, and Webster, born in Sept. ’00, is a mostly typical boy, with a few Autism Spectrum Disorder traits.”

When Taylor saw the recent Age of Autism columns on the first child diagnosed with autism — and how he appeared to improve after treatment with gold salts in 1947 — she got mad. As a Hopkins alumnae and a family therapist, she could not believe that doctors at Johns Hopkins, where that first child was diagnosed, had somehow missed the possible connection.

Leo Kanner, the leading child psychiatrist of his day, first diagnosed autism in a child known as Donald T., who came to see him at Johns Hopkins in Baltimore in 1938 at age five. Seven years later, Donald had a life-threatening attack of juvenile arthritis and was treated with gold salts at the Campbell Clinic in Memphis.

That is according to Donald’s brother, who still lives in the small Mississippi town where the two grew up. Donald also lives there, but has not responded to our request for an interview.

Following are excerpts of a post by Taylor on her blog, adventuresinautism.blogspot.com

—

Looking around, I seem to be the only one who is so upset with Kanner for not giving Donald’s medical treatment the consideration it deserved in assessing his considerable improvement from his “nervous condition.” I think my anger at him for this stems more from a professional place than the place of a parent, although the two together are a potent combination.

As I have mentioned elsewhere, I am a former marriage and family therapist and earned my master’s degree at Johns Hopkins. I also worked there as a grad student, doing my practicum in the psychiatry department in an outpatient program for adolescent substance abusers.

With my professional history, I feel able to put myself in Kanner’s shoes, in a basic way, in that I treated 12-year-olds at Hopkins, and I know what a huge responsibility it is. My criticism of him, I believe, is founded because I know how irresponsible it would have been for me if I had done a history on a patient, and not to included something so vital as the near death, extensive medical treatment and subsequent vast improvement of two very serious medical conditions, of said patient.

If I took patient histories this seriously as a 27-year-old grad student getting her master’s, then Leo Kanner, seasoned medical doctor and Psychiatrist, sure should have taken it all the more seriously.

If I went to the home of a patient to do follow-up after not seeing him for a few years, and noted that he had managed to kick heroin during a break in drug treatment, after a change in living arrangements and after a three-month hospitalization for a life-threatening illness, and I only reported the great living arrangement that he was in, I would not be doing my job. It could end up harming the patient, his family and heroin users everywhere who could be offered a treatment that might have stemmed from whatever medical treatment could have sped his recovery.

Is there a new medical treatment that can help heroin users kick the habit? Who knows? Ginger didn’t write it down, so no one looked into it.

Even if the family had not mentioned the hospitalization or attributed his recovery to it at the time, it would still be my responsibility to get ahold of his medical records even if only to assure continuity of care. This would be so much more true of Dr. Kanner as he defined autism and therefore took responsibility for every aspect of the diagnosis and all of the subjects that he took under his care. Add to the fact that he was a doctor at Hopkins in the first half of the 20th century, when doctors were considered godlike and few people questioned them, and his breach becomes all the more egregious.

In defense of Kanner, I don’t think that he was a heartless parent-basher and he should not be placed any where near (Bruno) Bettelheim, who destroyed so many lives and families. I just don’t think that he was thorough enough at a moment where it really, really counted. He made a freshman mistake that cost many people dearly and left the door open for Bettelheim (who blamed parents for their children’s autism).

“In further defense of Kanner, I have not read his follow-up paper, and I am taking the word of (The Age of Autism) and others who have written about it. I tried to read it last week but got so emotional about what happened to these children and couldn’t continue. I will reserve the right to amend my judgment of Kanner after I get the guts to read his paper.

In respect to the gold salts, I did not read the discussion of how the gold salts treatment may have impacted Donald’s “nervous condition” as a recommendation for parents to run out and try gold on their children, but merely as a discussion of how gold may have made a change in this specific case and what that might tell us about autism and its potential treatments. What I took away was not that gold could mitigate my son’s autistic symptoms, but that Donald’s treatment represents another case that points to the toxicological and autoimmune features of autism.

I don’t see gold as the answer to my son’s autism any more than I see kitchen mold as the answer to his ear infection. But the happy accident of a moldy petri dish in 1928 has led to hundreds of antibiotics to treat everything from a skinned knee to anthrax. The happy accident of Donald’s recovery might have meant the same for autism, had Kanner written it down.

If it had come to the attention of the medical community that gold salts had improved autism, then autism may have been recognized as an autoimmune disorder long before the 21st century. It may have also have shed light on how the body’s immune system works and how autoimmune responses are triggered, giving immunologists information that could have moved the entire field forward. It could have led to a better understanding of toxicology and how heavy metals could contribute to neurological disorders, and lead may have been removed from paint decades earlier than it was.

At the very least, we might know what autism, in all its forms, is by now.

Would any of these things have happened? Who knows? Leo didn’t write it down.

By DAN OLMSTED, United Press International   |   Aug. 31, 2005 at 5:48 PM

Have America’s medical authorities — including pediatricians — lost their credibility on an issue involving the well-being of the nation’s children?

It’s hard to avoid that question after New York Gov. George Pataki Tuesday signed a bill banning a mercury preservative from medicines given to children under 3 years old and pregnant women. The law takes effect in 2009 and exempts mercury-containing flu vaccines in case of an epidemic.

The measure was strenuously opposed by the American Academy of Pediatrics, and concern about the preservative as a cause of autism has been dismissed by government regulators. As late as last week, parent advocates feared a veto due to opposition from the doctors and the state department of health, despite overwhelming bipartisan support in the legislature.

A last-minute effort by a number of groups, including A-CHAMP — a parents’ organization that advocates elimination of mercury exposure, particularly in vaccines — prevailed in the end.

“I think this bill sends an important national message that elected officials in the states are looking at federal policy and coming to the realization they can’t trust Washington to do what needs to be done,” said John Gilmore, president of the New York Chapter of the National Autism Association and treasurer of A-CHAMP.

“Something is fundamentally broken at the Food and Drug Administration and the Centers for Disease Control,” said Gilmore, whose son Luke, 5, has autism. He noted that Missouri, Delaware, Illinois, California and Iowa have passed similar bans, and legislation is pending in 14 states from Florida to Washington.

The mercury preservative is called thimerosal, a component of many childhood vaccines until it was phased out beginning in 1999 at the urging of, among others, the pediatrics group.

But as states have moved to ban the substance in childhood vaccines and in medicine for expectant mothers, the pediatricians have objected, citing evidence that it has not harmed anyone.

“CONTACT GOVERNOR IMMEDIATELY AND URGE HIM TO VETO THE THIMEROSAL BILL,” said a statement from the District II New York Chapter of the American Academy of Pediatrics before Pataki signed the bill.

“This legislation represents very bad public health policy that is based on junk science and mass hysteria, not on the evidence of science. We at the AAP District II believe this bill is bad for our patients and bad for all New Yorkers, so please act now.”

At issue is whether thimerosal — which is 49.6-percent ethyl mercury by weight — caused an autism epidemic. While most mainstream experts dismiss the idea, some parents, doctors and scientists say it’s too early to rule out thimerosal. They allege flaws and conflicts of interest in some of the studies and say too many parents have watched their children become autistic after vaccinations.

The pediatricians say a ban just reinforces the discredited idea that thimerosal is toxic and might scare parents away from vaccinating their kids.

“This bill, designed to protect individuals from alleged adverse effects of thimerosal which contains ethyl mercury, is completely unnecessary,” said the AAP statement. “To legislate based on fear and misinformation is an anathema to those of us who work tirelessly for the health and welfare of our communities.

“To enact this legislation implies that the vaccines that have virtually eradicated many diseases, constituting one of the greatest public health accomplishments of the past century, are dangerous. This bill denigrates our informed scientific and medical communities while supporting all of the anti-vaccine factions in our society. This legislation potentially jeopardizes our most vulnerable communities.”

Thimerosal’s opponents argue such logic shows why mercury stayed in vaccines so long in the first place: Doctors can’t face the prospect they caused harm to children and are still in denial.

“Why would pediatricians now want to continue injecting children with a known nerve poison?” asked Dr. Alan Clark, a founder of No Mercury, which has pushed for the thimerosal ban nationwide.

He said such legislation “directly contradicts their previous position in 1999 that thimerosal should be removed from childhood vaccines.”

Gilmore, of the New York autism association, says the law will affect as many as 300 vaccines now under development.

The Buffalo News said in an editorial last week that Pataki should sign the bill. “While it has not been proven, some experts link mercury-laced thimerosal, used to prevent bacterial contamination, to autism and other neurological disorders,” the newspaper said. “If there is even a slight chance thimerosal could be linked to these neurological disorders, why take chances?”

After Pataki signed the bill, supporters slammed the pediatricians’ position.

“We continue to question why an organization consisting of pediatricians feels no need to protect New York’s children,” said a spokesman for the law’s proponents. “They have opposed legislation similar to New York’s in almost every state, but they should get the message, after losing now in six states, that the will and the power of parents will prevail to protect our children from neurotoxins.

“We are not anti-vaccine. We are opposed to injecting mercury, a potent neurotoxin, into babies.”

One group, generationrescue.org, has begun serving as a clearinghouse for parents interested in treatments based on the premise that autism is in fact mercury poisoning by another name.

By DAN OLMSTED   |   Aug. 29, 2005 at 4:06 PM

WASHINGTON, Aug. 29 (UPI) — A University of Kentucky chemist says he will do tests to see if gold salts might help children with autism — two weeks after this column reported that the first autistic child seemed to improve markedly after that treatment.

“You follow your nose in research, and when I saw that I thought, yes, this is a possibility,” said Boyd Haley, a professor and former chemistry department chairman at the university.

Haley said his interest was piqued by columns describing Donald T., the first person ever diagnosed with the disorder. Donald’s brother — interviewed in the small Mississippi town where they grew up and still live — told of his “miraculous response” to gold-salts treatment for a crippling attack of juvenile arthritis. He was given injections of the salts over a two- to three-month period at the Campbell Clinic in Memphis at age 12 in 1947.

The arthritis cleared up, and so did the “extreme nervousness” and excitability that had afflicted him, his brother said. He also became more social. He went on to college, where he was invited to join a fraternity; worked as a bank teller; and now, in retirement, pursues his love of golf and travels the world. Most of those early patients were institutionalized when they got older or lived in extremely sheltered circumstances, according to follow-up reports. (Donald did not respond to our request for an interview.)

Haley believes autism can be triggered by exposure to mercury; a mercury-containing preservative was in childhood vaccinations until it was phased out beginning in 1999. Federal health experts and medical groups dismiss the vaccine hypothesis, although it is championed by some parents and doctors. Haley noted that mercury could come from other sources as well, including a teething powder that was used for decades.

In this scenario, gold salts might help someone with autism because mercury and gold — which are side-by-side on the Periodic Table of the Elements — interact in a way that could de-activate ongoing toxic effects.

“Nothing has a higher affinity for mercury than elemental gold. They form bonds that are very tight,” Haley said. Devices designed to detect and filter out mercury routinely use gold, he noted — and would employ a less expensive element if gold weren’t so much more effective.

In the body, he said, gold is probably “attracted to the same places as mercury. They would probably make it to the same spot in the body. It (gold) would probably cross the blood-brain barrier like mercury. There are reasons to think that if you put it in, it would chase mercury down because they’re very similar in their chemistry.

“So you might be able to displace it with the gold. The chemistry gets complicated here, but gold does not do as much oxidative stress as does mercury. The gold isn’t nearly as toxic as the mercury. … It could take it off the enzyme it’s inhibiting and reactivate that enzyme.

“So what I’m going to do is get some gold salts and take a small brain tissue and infect it with mercury and see if this takes it off. If it does, then there’s something to this argument.”

Haley said he was intrigued that the treatment may have benefited Donald when he was 12 — relatively old for the treatments that some parents and physicians say are helping children.

“It doesn’t seem to work with the older kids,” Haley said. “These older kids are just lost.”

He cautioned that Donald’s case doesn’t prove anything and that such procedures carry risks. The key is more research, he said, a theme echoed by experts at a meeting in Bethesda, Md., last week to push for more scientific studies by federal agencies. Haley attended the meeting and made a presentation.

“Don’t jump on this. Be careful. You can hurt kids,” he said.

That concern was underscored last week when a 5-year-old autistic child died while undergoing chelation in Pennsylvania. That treatment is designed to pull heavy metals from the body. Federal officials say it is not a responsible practice, although one advocacy group says more than 10,000 families have tried it, with significant benefit and minimal side effects.

Chelation studies were among those recommended by the group meeting in Bethesda last week.

By DAN OLMSTED   |   Aug. 24, 2005 at 1:19 PM

WASHINGTON, Aug. 24 (UPI) — Something startling happened to an autistic boy named “Donald T.” 58 years ago at the Campbell Clinic in Memphis. He got better — a lot better.

That’s when Donald, the first person ever diagnosed with the disorder that now afflicts a quarter-million U.S. children, was treated with gold salts after a life-threatening attack of juvenile arthritis. The treatment at the renowned orthopedic clinic was designed to combat his arthritis, but Donald’s autism improved remarkably, too.

He became more social. His excitability and extreme nervousness cleared up. He went on to college, where he was invited to join a fraternity; he became a bank teller and, now retired, is an enthusiastic world traveler whose favorite city is Istanbul. Most of the other early patients showed little or no improvement and were institutionalized or lived in extremely sheltered settings.

We learned about this a couple of weeks ago from Donald’s brother, who we interviewed in the small Mississippi town where the brothers grew up and still live. (Donald has not responded to our request for an interview.)

Getting better is something parents of autistic children devoutly wish for them, yet we found no record of the gold-salts treatment and its apparent effects in studies of the first patients with autism. The Johns Hopkins University psychiatrist who diagnosed Donald’s autism attributed the improvement instead to a “wise, intuitive” farm couple with whom Donald was sent to live — at his suggestion.

But if medical treatment at age 12 made the difference, a couple of explanations suggest themselves. In the last column we looked at how gold salts might work — in theory — by suppressing a harmful autoimmune reaction in the brains of autistic children. That’s how they suppress juvenile arthritis in joints.

Another idea suggested by a number of readers is that the gold salts might be a form of chelation, which draws heavy metals out of the body.

Chelation (key-LAY-shun) has been employed for half a century as a standard treatment for lead poisoning. Its controversial use in autism stems from the idea — dismissed by medical groups and federal health authorities — that the disorder is mercury poisoning by another name, caused by a preservative that was in childhood vaccines. (The first use of that preservative in vaccines appears to be in 1931, the same year the first child eventually diagnosed with autism was born. Donald was born in 1933.)

The rationale in Donald’s case is speculative but simple: Gold, No. 79 on the Periodic Table of the Elements, has a proven affinity for Mercury, No. 80.

“As parents of an autistic child, we are very familiar with the benefits of biomedical treatment for autism, and we have seen a meaningful change in our son’s symptoms after treating him for the medical condition he actually has, mercury toxicity,” J.B. and Lisa Handley, founders of generationrescue.org, wrote Age of Autism.

“It is no surprise that gold salts improved Donald T.’s ‘autism.’ As gold miners as far back as the Roman Empire would tell you, gold and mercury have a strong binding affinity for each other, and the gold salts likely acted as a rudimentary chelator to help Donald T. detoxify. (Mercury is used in gold mining to separate small particles of gold from sand.)

“Luckily for parents, our knowledge of how to chelate mercury out of the body has improved since Donald T. was a child, and today we have prescription chelators with a strong binding affinity for mercury without some of the potential negative side effects of gold,” they said.

“With names like DMPS, DMSA and EDTA, these chelators are being used right now to recover thousands of autistic children from their ‘autism’ by pulling the mercury and other toxic metals out of their body so our children can again lead a normal life.”

The Handleys say upwards of 5,000 autistic children have been treated with chelation, up from 10 in 2000. An official of the National Institutes of Mental Health told The New York Times last month “it isn’t responsible” to use chelation for autism. No scientific studies have been published, and just one — funded by parents — is under way.

Another parent forwarded us a July 29 news release from the University of Central Florida about what seems like an analogous process: removing mercury from water using tiny pieces of gold.

“In the near future, this process can be used to create water filters and reclaim contaminated water,” the release said. “The first step to cleaning polluted water is detecting it. (The new) method uses gold nanoparticles, each about 2,000 times smaller than the width of a human hair. First, a liquid solution containing gold nanoparticles is mixed with a sample of the possibly-contaminated water. Then, because mercury has such a strong affinity for gold, any mercury in the water quickly binds with the gold.”

Another parent wrote: “I nearly lost my dinner when I saw your article. I was speaking last week with a neurochemist who was inquiring about chelation in autism as a family member of two adult autistics. He specifically asked whether gold had ever been tried since it has that property, of which I had previously been unaware.

“That’s why your article totally stunned me. As with Patient Zero in the AIDS epidemic, this patient zero is very informative.”

We also heard from parents who noted that along with autism, autoimmune conditions — from juvenile diabetes to asthma to skin problems to celiac disease to juvenile arthritis — appear to have increased significantly over the past few years.

“I have a son, age 21, with Asperger Syndrome, and a daughter, age 23, with Still’s Disease, which is another name for the juvenile rheumatoid arthritis that you mentioned that this patient had,” one parent wrote. “I have read in many different places that there is a strong association of JRA/Still’s and Autism Spectrum Disorders in the same families.”

Many parents also tell us that their child’s autistic symptoms improve when inflammation — especially in the gastrointestinal tract — is treated.

Are any of these clues to autism, and are they visible in other early patients with autism? We’ll look at that in upcoming columns.

By DAN OLMSTED, United Press International   |   Aug. 22, 2005 at 3:07 PM

Why would treatment with gold help someone with autism?

That is the question raised by The Age of Autism’s report last week that the first child ever diagnosed with the disorder appeared to improve significantly after treatment with gold salts.

We’ve heard from a number of readers — some with autistic children they’re trying to help — asking the same question.

So far, we’ve found a couple of possible explanations, both courtesy of those who believe autism is triggered by some sort of toxic exposure in susceptible children. The idea — dismissed by federal health authorities — is that the culprit in autism is the mercury preservative that was used in vaccines or, in some cases, the actual vaccines themselves.

That first autism patient, known as “Donald T.,” is now 71 and lives in the small Mississippi town he grew up in. Diagnosed with autism at age 5, he had a life-threatening attack of juvenile arthritis at age 12, according to his brother; his temperature spiked uncontrollably, his joints stiffened and were extremely painful. He stopped eating.

“It looks like Don’s getting ready to die,” his father told a small-town physician after specialists failed to diagnose the ailment or find an effective treatment. That doctor suggested it might be juvenile arthritis, and after treatment with gold salts at a Memphis clinic, Donald’s autism as well as his arthritis improved.

Injectable gold salts — sodium aurothiomalate — were used to treat arthritis because they have anti-inflammatory properties.

“He had a miraculous response to the medicine,” his brother told us at his Mississippi law office. “The pain in his joints went away. When he was finally released, the nervous condition he was formerly afflicted with was gone. The proclivity to excitability and extreme nervousness had all but cleared up.” Donald also became “more sociable,” he said.

We couldn’t find any record of that in subsequent writings about the first patients with autism. Instead, the child psychiatrist who diagnosed those cases attributed Donald’s remarkable success in life — he belonged to a college fraternity, was a bank teller and now, in retirement, travels the world — to four years he lived with a “wise, intuitive” farm couple.

An alternative explanation — biomedical rather than behavioral — involves the body’s immune system as a triggering agent of autism:

— Start with the idea that gold salts reduce the autoimmune response that causes juvenile arthritis. Although the mechanism is unclear, they appear to do so by suppressing a type of immune-signaling cell called cytokines.

— Brain cells called microglia produce a specific type of cytokine, which can be activated in the presence of mercury or neurotoxic viruses including measles. That type of cytokine has been found on autopsy in the brains of people with autism.

— The cytokines that are produced chronically in an autoimmune condition may contribute to neurological problems, including oxidative stress, overstimulation of brain cells and abnormal growth signals during development.

So the state of immune activation that is present in juvenile arthritis may contribute in parallel to autistic symptoms. Suppressing the immune activation, as gold salts do with arthritis, may have additional benefits on the autism-symptom side.

We found a version of this idea in a 2002 report by the Meridian Institute, titled “Gold and Its Relationship to Neurological/Glandular Conditions.”

The four authors suggest that a useful experiment would be “attending to the side effects of gold medications in cases where there is co-morbidity of rheumatoid arthritis and a neurological, psychiatric, or glandular disorder. For example, one could ask, do patients with epilepsy, depression, or adrenal insufficiency who may be receiving gold for arthritis show any improvement in neurological/glandular symptoms?”

One could just as well ask: How about patients with autism? That experiment may inadvertently have taken place in Mississippi in 1947. Subject: Donald T.

Gold and other elements have been used since antiquity as “nervines” to treat mental conditions. The authors note that lithium is an element that has proven highly effective against bipolar disorder.

“It is clear there is a long tradition of gold as a nervine,” they write. “But there were no multi-center clinical trials; that is a modern phenomenon. There were only observations and reports of individual cases.”

They quote a 1983 study on animals that showed gold “localizes in nervous system tissue.” And they cite a small, preliminary 1996 study that showed after four weeks of colloidal gold treatment, IQ scores increased dramatically in test subjects.

“While a study of this small size is very preliminary, it is encouraging evidence of the potential of gold as a nervine, and as a demonstration of a non-toxic preparation,” they wrote.

In the next column, we’ll look at how the controversial treatment called chelation might fit with all this.

Aug. 17, 2005 at 4:43 PM

WASHINGTON, Aug. 17 (UPI) — The news that the first child diagnosed with autism got better after medical treatment — while leading experts didn’t make the connection — suggests how research and reality have been distorted for decades.

As The Age of Autism reported Monday, the child known as Case 1 is alive and doing remarkably well in the same small Mississippi town he grew up in. Although we didn’t talk directly to “Donald T.,” his brother told us that he had a “miraculous response” to gold salts treatment at the age of 12.

It cleared up a devastating case of juvenile arthritis and — astonishingly — made a marked difference in Donald’s autism, he said.

“When he was finally released, the nervous condition he was formerly afflicted with was gone,” his brother said of the two- to three-month gold salts treatment in 1947.

“The proclivity to excitability and extreme nervousness had all but cleared up, and after that he went to school and had one more little flare-up (of arthritis) when in junior college.” He also became “more sociable,” his brother said, and was invited to join a college fraternity.

That was 58 years ago, yet we’re not aware of any mention in the millions of words written about autism that this very first case may have gotten better following a novel medical treatment.

Instead, today’s mainstream medical experts dismiss the idea of biomedical interventions such as anti-inflammation and detoxification therapies as dangerous hooey perpetrated by quacks and charlatans.

Yet the treatment Donald got was patently biomedical: Medicine prescribed by a doctor to treat a physical illness appears to have had a positive effect on his mental disorder.

The official hostility to such approaches is currently so great that the only research under way on the topic is funded by parents. An official at the National Institutes of Mental Health told The New York Times last month that it “isn’t responsible” to prescribe chelation, which is designed to eliminate heavy metals from children with autism.

Yet dozens of parents — and, for that matter, dozens of doctors outside the mainstream treatment community — say the treatments have made huge improvements.

Some of them have banded together at generationrescue.org; they argue that autism is mercury poisoning (primarily from a preservative that was used in vaccines) and that getting the mercury out has cured some children of autism and vastly improved the condition of others.

Other doctors, many of them connected with Defeat Autism Now!, a project of the Autism Research Institute, are using everything from special diets to B vitamins to folinic acid. They cite similar successes, and many parents agree.

These parents and doctors get the modern equivalent of what awaited the parents of early autistic children — skepticism and scorn.

In the beginning, there was strong suspicion — in many quarters, certainty — that bad parenting caused autism. This came in part from the striking fact that so many of the parents of those early cases were successful, affluent, career-oriented professionals. Even more suspiciously, many of the mothers had college degrees and — alert the mental-health authorities! — their own careers.

“One other fact stands out prominently,” wrote Leo Kanner, the child psychiatrist who first identified autism, beginning with Donald T., in his landmark 1943 paper on the disorder. “In the whole group, there are very few really warmhearted fathers and mothers. … The question arises whether or to what extent this fact has contributed to the condition of the children.”

While Kanner also noted that the children appeared to have been autistic from birth — and thus the parents’ personalities could not entirely explain their children’s disorder — it set the stage for a tragic morality play over the next several decades.

The worst was Bruno Bettelheim, who wrote in “The Empty Fortress” in 1967: “I believe the initial cause of withdrawal is rather the child’s correct interpretation of the negative emotions with which the most significant figures in his environment approach him. … The tragedy of children fated to become autistic is that such a view of the world happens to be correct for their world.”

We couldn’t help thinking of all that when Donald’s brother told us Kanner suggested “the best thing that could happen” would be to place Donald with another family — a childless farm couple. The parents complied, but it was only after the juvenile-arthritis attack four years later, and the subsequent gold-salts treatment, that Donald dramatically improved.

Yet Kanner attributed the change to “the intuitive wisdom of a tenant farmer couple, who knew how to make him utilize his futile preoccupations for practical purposes and at the same time helped him to maintain contact with his family.”

It wasn’t until Bernard Rimland wrote Infantile Autism in 1964 that the idea of the “refrigerator mother” began to change — slowly.

What makes Donald’s case all the more interesting is that none of the specialists his family took him to — including the Mayo Clinic — could identify the cause of his uncontrollable fever and joint pain when he was 12, his brother said. It wasn’t until Donald’s father happened to mention the affliction to a practicing physician in a nearby small town that juvenile arthritis, a rare autoimmune disorder, was identified.

Here is how one of our correspondents summarized this sequence:

—

1. The world expert (Kanner) was incompetent with respect to medical assessment of illness.

2. He assumed that they needed to get Donald away from his parents. They really did think it was a parental abuse problem back then.

3. Kanner mistakenly attributed Donald’s progress to the “therapist” when it was really the medicine.

4. Recovery is possible with biomedical treatment.

5. Biomedical treatment ideas are not likely to come from the autism experts (Kanner) or the prestigious clinics (Mayo). They come from real medical doctors who know how to recognize real illness and autoimmunity in the kids.

—

Contrast that analysis with the standard dismissals when parents claim biomedical treatments have helped:

— They may be indulging in wishful thinking — wanting their child to improve so badly that they delude themselves;

— They may have tried another treatment such as behavior therapy that is actually responsible;

— Their child may not have been very autistic in the first place.

Does anyone think Donald T., the first child diagnosed with autism, was not very autistic in the first place? Surely, Donald’s family was not “imagining” his improvement, since they weren’t even trying to treat his autism.

Of course, that intuitive, wise, childless farm couple may have made all the difference — that is, if you think autism is caused by unwise, non-intuitive mothers and fathers (bad parents).

We don’t know what to make of Donald’s evident improvement — and the fact that it has stayed buried for so long even as parents and researchers frantically turn over every stone to uncover treatments for this burgeoning, awful disorder.

We acknowledge we have not met Donald and are unable to vouch for his brother’s account, although we certainly found him credible and convincing.

But it does make us wonder whether much has changed.

These days, parents aren’t condemned for having autistic children — just for doing something about it without the permission of experts who are certain nothing can be done.

In upcoming columns we’ll look at the implications of Donald’s treatment.

By DAN OLMSTED, UPI Health Editor   |   Aug. 15, 2005 at 9:45 AM

The first person ever diagnosed with autism lived in a small town in Mississippi. He still does.

“Donald T.” is now 71, and after a “miraculous response” to medical treatment at age 12, he appears to have recovered significantly since his original diagnosis as a 5-year-old.

His improvement is so striking, in fact, that it raises new questions about the disorder and its treatment.

Donald went on to graduate from college, where he joined a fraternity. He worked as a bank teller and belongs to the Kiwanis Club. He owns a handsome house with a large well-tended yard, drives a car, plays golf several times a week and travels the world solo. Recent itinerary: Rome; Palermo, Sicily; Corsica and Sardinia. This past weekend he was returning from Branson, Mo.

In short, he doesn’t seem terribly autistic anymore.

“It sounds like he moved right off the spectrum,” said one doctor whose practice includes scores of children with autism.

The treatment Donald received in 1947 was not intended to help his disorder, but to save his life. Donald had come down with an uncontrollable fever, stopped eating and had severe joint pain and stiffness that was finally diagnosed as juvenile arthritis, a rare autoimmune condition. Such problems occur when the body’s own defense mechanisms go haywire, in this case causing inflammation that was destroying his joints.

After being treated for several months with gold salts — then the standard therapy and still in use — not only his arthritis but some of his most disabling autistic traits cleared up simultaneously.

We learned all this after we determined Donald’s identity and that of his brother, whose law office is on the second floor of a building across the town square from the courthouse. The brother, although understandably taken aback when we showed up last Friday, was cordial and said he didn’t mind being quoted by name, but because Donald has not responded to our request for an interview — and we do not wish to intrude on his privacy — we decided not to identify the family or the town at this time.

Medical researchers certainly know where to find Donald — his brother said Johns Hopkins University medical personnel check in “about once a decade” to observe Donald’s progress. It is not clear whether anyone at Johns Hopkins, where Donald was diagnosed, ever considered whether his striking improvement was related to the gold-salts treatment.

Upwards of a quarter-million U.S. children have autism, and diagnoses are rising. The cause is unknown. Medical groups and federal health officials have dismissed the “biomedical” approaches being tried by some parents and doctors as unproven and irresponsible.

“You have to keep in mind that the history of medicine is strewn with discarded treatments that people at one time believed in very, very strongly,” Dr. Harvey Fineberg, president of the Institute of Medicine, said on NBC’s “Meet the Press” earlier this month in response to a question about those treatments.

Such an approach, however, appears to have made the difference for Donald, at least according to the brother, who is his closest living relative — and who was clearly unfamiliar with the current debate.

Donald’s parents took him to Johns Hopkins in Baltimore at age 5 in 1938 to be evaluated by Leo Kanner, the leading child psychiatrist of his day. Kanner realized that Donald’s behavior syndrome — which included repetitive actions, limited and odd use of language and profound social disengagement — was “markedly and uniquely different from anything reported so far.”

Over the next four years Kanner saw 10 more such children, and in 1943 he published their case histories in a landmark paper titled “Autistic Disturbances of Affective Contact.”

“There was a marked limitation of spontaneous activity,” Kanner observed about “Case 1, Donald T.”

“He wandered about smiling, making stereotyped movements with his fingers, crossing them about in the air. He shook his head from side to side, whispering or humming the same three-note tune. He spun with great pleasure anything he could seize upon to spin.”

He also had what would prove to be characteristic speech patterns of autism, including affirmation by repetition. For example, if he wanted to get down after his nap, he said, “Boo (his word for his mother) say, ‘Don, do you want to get down?’” Yet he could recite 25 questions and answers of the Presbyterian catechism and had perfect pitch (he still does).

In our interview, Donald’s brother outlined what happened after Kanner’s diagnosis.

“My brother was extremely nervous and excitable. Dr. Kanner, when they took Don up there, told my mother and father that the treatment he was going to recommend was, if they knew a couple out in the country — a childless couple — in his opinion (having Donald live with them) would be the best thing that could happen.”

They found such a couple, and Donald began living on a farm about 10 miles from town in 1944, when he would have been 9 years old.

“In 1947, one February day I think it was, they came to (town) with Don. He had a bad fever and was obviously sick. My father and mother took him to all various places for examination — they went to the Mayo Clinic, brought him back.”

Because Donald’s family was affluent — his father was a Yale-educated lawyer — they could afford the best doctors and knew where to find them, but nothing seemed to help.

“He lost his appetite and was terribly emaciated,” his brother recounted, comparing his appearance to a concentration-camp survivor. “But anyway, my father was talking to a doctor (in a nearby small town) he happened to run into.” He told the doctor, “It looks like Don’s getting ready to die.”

That doctor, without having examined his son, said, “What you’re describing sounds like a rare case of juvenile arthritis.”

Armed with that tentative diagnosis, his parents took Donald to a clinic in Memphis, where they “began to treat my brother with gold salts for 2 to 3 months.”

The results were spectacular.

“He just had a miraculous response to the medicine. The pain in his joints went away.” Donald has one fused knuckle to show for the nearly fatal affliction.

There was more good news.

“When he was finally released, the nervous condition he was formerly afflicted with was gone,” his brother said. “The proclivity to excitability and extreme nervousness had all but cleared up, and after that he went to school and had one more little flare-up (of arthritis) when in junior college. They treated it with cortisone.”

The interview with Donald’s brother significantly adds to the information known about him and establishes a new timeline — one in which the gold-salts treatment now appears to be a pivotal but previously undocumented event.

In a 1970 letter cited by Kanner, Donald’s mother mentions “he had an acute attack of rheumatoid arthritis in 1955. Fortunately, this lasted only a few weeks. Physically, since that time he has been in perfect health. … Since receiving his AB degree in 1958, he has worked in the local bank as a teller.”

She was evidently describing the “one more little flare-up” that Donald’s brother described as occurring in junior college. We found no reference in Kanner’s writing to the life-threatening first onset of juvenile arthritis at age 12 or to the treatment that followed.

Instead, Kanner attributed Donald’s standout success in later life — most of the 11 initial patients were ultimately institutionalized or lived in extremely sheltered circumstances — to the couple with whom he stayed for those four years.

Kanner wrote in 1971:

“Donald, because of the intuitive wisdom of a tenant farmer couple, who knew how to make him utilize his futile preoccupations for practical purposes and at the same time helped him to maintain contact with his family, 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.”

Yet, in our interview, Donald’s brother cited the medical treatment and said it made a permanent difference in Donald.

“It sure did,” he said. “He became more social,” noting that just a few years later Donald was asked to join the college social fraternity, whereas people with autism are prone to isolation and do not usually acquire friends.

Would he call his brother autistic now, we asked? “It’s just in certain areas,” he said, citing a total lack of interest in dating or a life companion.

Donald’s transformation, his brother said, “is the most amazing thing I’ve ever seen.”

By DAN OLMSTED   |   Aug. 9, 2005 at 2:11 PM

WASHINGTON, Aug. 9 (UPI) — This week’s column about the first autism diagnoses brought a quick response from longtime autism researcher Dr. Darold A. Treffert. Treffert is past president of the Wisconsin Medical Society and a psychiatrist at St. Agnes Hospital in Fond du Lac. He wrote the book “Extraordinary People: Understanding the Savant Syndrome.”

Our view is that the first autism diagnoses in the 1930s appear to represent something new — because Leo Kanner, the psychiatrist who identified the early cases, called them “markedly and uniquely different” from anything seen before. Kanner was the leading child psychiatrist of his day.

Treffert, who met and was inspired by Kanner, says autism in fact has existed throughout history.

Here is his letter.

—

While Leo Kanner named autistic disorder, it did not begin there any more than many medical conditions recognized and named by doctors (including Asperger’s, Down’s Syndrome, Turner’s Syndrome, Crohn’s Disease, Grave’s disease, Cushing’s syndrome (etc. etc.) began when recognized and named.

You are right to go back in time a bit to look at autism pre-immunization-debates, but you are not going back far enough. You need to go back at least another 53-plus years to the very astute and before-their-time observations of Dr. J. Langdon Down in 1887 regarding disorders he called “developmental” way back then.

Most astoundingly, Dr. Down differentiated, in these “developmental” disorders (a term we use today) between early onset and late onset (regressive) autism! I refer you to my posting “Dr. J. Langdon Down and Developmental Disorders” on the savant syndrome Web site at www.savantsyndrome.com. Formal publication of those findings is under way and in press.

The point is, while Kanner named the condition, it did not begin with him. I had the opportunity to meet with Dr. Kanner when he was a visiting professor at University Hospitals in Madison during part of my training there. He was a very graceful, gentle and kindly man, with much to say about autistic disorder, and I valued his observations. He in fact tapped some interest in me in that unusual condition, an interest I have followed up on now, all of my professional life.

I had the opportunity to develop a Children’s Unit as my first “job” as a psychiatrist, and it was there I met my first savants among the autistic patients we had on the unit. It was there also I carried out the statewide study on the epidemiology of infantile autism and confirmed, at that time, the figure of 4.8 per 10,000 cases which, like Rutter’s in England, is often quoted.

I also confirmed that in that group — at that time generally referred to as Childhood Schizophrenia — only about 25 percent were cases of Kanner’s classic autism.

Germane to the present debate was the circumstance that among the cases of autism on our unit (1962) were cases of late onset, regressive autism.

These were patients, like Down’s in 1887, and like Kanner’s 50 years later, who began to regress after a period of normal development.

These constituted roughly 25 percent of our cases, I would say. In each and every case, the mothers identified some event as the trigger for the regression. I remember distinctly one mother tying the regression to the child falling off the pier and nearly drowning; another tied it to when the child was hospitalized for tonsils-and-adenoids surgery; another to the time the child got trapped in the silo.

Down tied it to the “second dentition,” temporally at least. And there seems to be a relationship, again temporally at least, to immunizations (whether there is more than a temporal relationship to immunizations remains to be fully explored). The point is, each parent always ascribed the abrupt and sudden regression, naturally and understandably, to some event.

So I think it worthwhile to go back in time to compare autism today with autism at an earlier time. But you need to go back farther than Dr. Kanner, observant as he was. And if I had the time, I would go back further than Down, also looking under different labels, just as I had to look under the different label of “childhood schizophrenia” in the 1970s to find a group of cases that clearly were what we now call autistic disorder.

As I said in my 1970 article, the beginning of wisdom is to call things by their right name. And we do a very poor job of that in autistic disorder. Also, in medicine and elsewhere we keep “rediscovering” the obvious and pronouncing it “news.” Hence my perpetual look backwards (older people often develop an interest history).

I was somewhat amused to see news reports this week reporting the “new” discovery based on Dawson’s work, that some forms of autism are “regressive” in children who reached developmental milestones and then “regress.” Really! There is nothing “new” about that.

They also reported the astounding revelation that there may be more than one cause of autism. Really! That’s not news either, but it is typical superficial medical reporting where someone did not do their homework.

Dr. Down reported regressive autism 125 years ago (based on his 30 years of observations) and, without doubt, autism, like mental retardation, has been around as long as man has been around. Now we need to sort out this condition by its right names, sort it out into its several causations, and gently have “mainstream” medicine and “alternative” medicine come together, work together, respect each other and gradually forge out effective treatment tailored to specific etiologies.

Three axioms have guided my career: 1) The first step in treatment is to make a diagnosis. 2) Listen to the patient (or the parent) for he or she is giving you the diagnosis. 3) The beginning of wisdom is to call things by their right names.

In the research on autism we have not a very good job with any of those axioms. That’s what keeps propelling me along in this elusive search.

By DAN OLMSTED, UPI Consumer Health Editor   |   Aug. 8, 2005 at 5:06 PM

Sunday’s debate on NBC’s “Meet the Press” over vaccines and autism gave welcome exposure to an issue that won’t go away quietly.

Moderator Tim Russert asked Dr. Harvey Fineberg, president of the Institute of Medicine — part of the National Academy of Sciences — this question: “Do you think there’s an epidemic of autism or do you think it’s simply a change in defining it?”

Fineberg answered: “There’s definitely a huge number of cases diagnosed with autism. … It’s also clear that the definition was broadened markedly in the 1980s and 1990s, and there were increased incentives to recognize children from increased awareness and availability of services.

“No one knows with certainty what part of the increase is genuine, a genuine increase in numbers, and what part is from increased recognition of people who were already there but not previously recognized.”

As readers of this column know, we believe this is the core issue in trying to understand the disorder. If in fact autism has strikingly increased in prevalence — not just in recognition — the idea that autism is primarily a genetic disorder doesn’t hold up. No genetic illness could rise so rapidly.

But if there have always been people with autism in reasonably similar numbers, then the idea that some new trigger — vaccines, for example — is behind autism begins to look implausible if not impossible.

Fineberg appeared on the show with David Kirby, author of “Evidence of Harm,” a new book that looks at the debate through the eyes of parents who believe vaccines triggered their child’s autism. Because of the flow of the conversation, Kirby did not have a chance to address the “epidemic” issue directly.

If he had, he could have pointed to a number of studies that suggest the increase — to 1 in 166 children — is real; he could have cited the Centers for Disease Control and Prevention’s own statement that one in six children has some kind of neurodevelopmental disorder. He could have noted the parents and education professionals who believe something bad has happened to this generation of children — not just autism, but learning disabilities and behavior problems, asthma and diabetes that have never occurred in such numbers.

Still, it’s a complicated topic, one that is not easily resolved merely by citing statistics and diagnostic categories. That’s why our approach has been slightly different: We’ve set out to describe the natural history of autism from the beginning.

That means we looked at where and when autism was first diagnosed as a separate disorder; what kind of families had autistic children; how that demographic broadened to include a wider swath of society; and whether autism is as prevalent in some communities — the Amish being our prime example — as it is in others.

What we can’t get past is this: The first person to diagnose autism said he’d never seen it before, and neither had anyone else. His name was Leo Kanner, and he was not some country doctor; he was the leading psychiatrist of his day, a professor at Johns Hopkins University in Baltimore. He wrote the book “Child Psychiatry.” In fact, he’s been called the dean or father of modern child psychiatry.

Beginning in 1938 he saw children with a behavioral syndrome that differed “markedly and uniquely from anything reported so far.” Kanner wrote the landmark 1943 paper, “Autistic Disturbances of Affective Contact,” about the first 11 cases.

Kanner became the world’s authority on autism and saw children referred from North America and South America and as far away as South Africa.

Yet by 1958 — 15 years after he first created the diagnosis — he had seen just 150 autism cases. Another doctor who became the European authority on the disorder saw only 10 cases in the decade after his first paper was published; a third “found only one true case of infantile autism in 36,500 clinical cases,” according to Bernard Rimland’s 1964 book, “Infantile Autism.”

No matter how you slice or dice the diagnostic categories, something doesn’t compute — how can there be half a million children with Autism Spectrum Disorders living in the United States today, when the man who identified the disorder could only find 150 in the first 15 years?

What’s more, the oldest child Kanner diagnosed with autism was born in 1931. We found no evidence of a child diagnosed with autism who was older than that. True, some autism cases are due to organic causes — Fragile X Syndrome or rubella in a pregnant mother — and Kanner acknowledged that.

Still, in 1978, looking back on his career, Kanner said the first child he saw in 1938 “made me aware of a behavior pattern not known to me or anyone else theretofore.”

We don’t understand how a genetic model of autism fits with that. Never mind the 1990s; what happened in the 1930s? Today’s medical mainstream pretty much skips over that issue, repeating the mantra of better diagnosis.

We’re not so willing to dismiss the eyewitness expertise of the man who first identified the disorder — we think his observations cannot simply be cast aside if they become inconvenient or inconsistent with a prevailing point of view. That’s not a mainstream thing to do at all.

For that reason, we’ve gone back again to the beginning, looking for clues to the roots and rise of autism in Kanner’s first cases.

We think we may have found something, which will be the subject of the next several columns.