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By DAN OLMSTED, UPI Health Editor   |   Aug. 3, 2005 at 5:36 PM

Genetic interactions that appear to create a risk for autism have been identified by researchers at Duke University.

The researchers determined that one so-called GABA-receptor gene — which plays a critical role in stopping or slowing nerve impulses — is involved in the origin of autism. Autism risk increases through that gene’s interaction with another GABA gene, they found.

The finding adds to the likelihood there is no single “autism gene,” unlike some other disorders in which one primary genetic defect has been identified.

“The fact that we find these two GABA genes that contribute to autism risk by interacting, I think it lets us say, yes, this is going to be a complex trait,” Margaret Pericak-Vance, director of the Duke Center for Human Genetics, told United Press International.

“So far we haven’t found that big (primary) gene in autism,” she said. “Have we done a complete, exhaustive search? No, but we’ve done a lot of looking.”

The findings are in the September issue of the American Journal of Human Genetics, available online.

GABA-receptor problems already have been implicated as a possible factor in autism, in part because people with the disorder have altered GABA levels. Also, GABA appears to play a key role in early neurological development, and autism is a disorder that manifests in the first three years of life.

Duke researchers earlier linked a portion of chromosome 15 to autism risk. That chromosome contains codes for GABA receptors. Because GABA stops nerve cells from firing, a flaw there could explain why some children with autism appear to be overwhelmed by stimulation.

Pericak-Vance said the findings don’t rule out an environmental link to autism. Diagnoses have soared in the past decade, and some parents and researchers suspect that a mercury preservative in vaccines triggered the increase, although most medical experts dismiss that.

“We know autism is complex, and when I think of a complex trait I think of gene-gene and gene-environment interactions,” she said. “And I am sure that’s what’s going on in autism if I had to bet — a combination of both.

“I think there are going to be multiple different forms. Some forms have certain genes contributing to it and other forms have gene-environment type interactions.”

She said current research “is going to make it possible for us to attack these more complex problems where we might not have 10 years ago. We have methods that can detect these things — that’s what’s key.”

By DAN OLMSTED   |   Aug. 2, 2005 at 1:43 PM

Monday’s column featured a letter from Kendra Pettengill of Roseburg, Ore., who challenged the idea that the huge increase in autism diagnoses over the past decade can be explained by better diagnosis. In fact, she said, something has happened to trigger an epidemic of autism in America’s children.

This column features some of the wide range of replies we received.

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You wonder where the adult autistics are. Well, one repairs our computer systems. He’s in his fifties, self-employed, and was diagnosed as possibly schizophrenic in the 1950s.

Another, my husband, is self-employed as a writer. A sister-in-law is an archivist and research librarian. A brother-in-law is an engineer, working on government contracts. My grandfather didn’t speak until he was 5. He grew up and became a carpenter.

In the youngest generation of our family we have several diagnosed autistics and several who are just under the radar. I’m not even mentioning those who have perfect pitch and have been accomplished musicians since very young ages. And I’m not mentioning the young accomplished artists, though they give pause to think.

Autistics have always been part of the population. You’re not looking in the right places, that’s all.

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I have an 11-year-old daughter, diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), and even though I am not a scientist I do not believe this rise in autism cases is because of better diagnostics. I believe it is a combination of environmental factors that have taken place now these last 30-plus years.

One idea is to interview people who have been in the child-care business for the last 30 years. It would be interesting to get their observations. I say this because our pre-school teacher, who has remained a friend through the years, would just shake her head and tell me, “I don’t know what’s going on, but when I started my pre-school we never had kids with problems and now every year I see more and more kids coming in that I have to refer the parents for testing.”

Very interesting, huh?

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I am an 18-year-old with Asperger’s Syndrome, and this is my first time writing a reply to an article like this. I went undiagnosed for a large portion of my life, struggling with many things such as social interaction and sensory issues, and not knowing why.

True, I am not on the severe end of the autism spectrum, but it does have a significant impact on my life. I am sure that I would not have been diagnosed several years ago, and that people like me who are able to function fairly well are being diagnosed more and more due to a better understanding of the lighter end of the autism spectrum. So I would say that a rise in awareness has greatly contributed to the increase in diagnoses.

The sentence “No child with autism ever went undiagnosed” is not true. I, along with many other autistics, went undiagnosed for a long time. In the past, many more severely autistic people were probably misdiagnosed.

For anyone who is interested in reading more from the perspective of adult autistics (we do exist!), I would highly recommend this website. It has many articles, written by people all over the spectrum: www.autistics.org

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I just read your excerpts of Kendra Pettengill’s comments and I agree with her completely. I never even heard of autism when I was growing up. My 11-year-old was diagnosed with autism eight years ago. When I am with him in public it is rare that I do not get someone telling me about their autistic child, grandchild, niece, nephew or child of a good friend.

These are strangers who know in an instant that my son has autism, as I do when I see a child on the spectrum. These children could not possibly be “missed” or misdiagnosed. How many 11-year-olds communicate with grunts and babble like infants? How many toddlers hit themselves repeatedly or fail to react to the sound of a metal pot being banged next to their head but run across the house when the Barney tape starts?

My husband and I started a school for children with autism since we could not find a good program. We get desperate calls everyday. If there were so many autistic kids before, they must have been locked up in closets! No, it is just our government that is hiding in the closet, afraid to face what they have done.

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Apparently, Ms. Pettengill thinks I don’t exist. She declares, in no uncertain terms, that no autistic has ever gone undiagnosed, in any time, in any place, ever.

Well, I am sorry to disappoint her, but I do exist, and so do a lot of others like me. I am autistic, and I was not diagnosed as such until I was an adult. I didn’t speak at two years of age, and when I did begin to talk, it was echolalic. I persistently rocked, flapped, walked on toes, and avoided contact with other kids. I spun any object I could get ahold of.

My mother knew she had an unusual child, but she wasn’t so horrified by the prospect of me not being normal that she ran right out and had me evaluated. She figured out how to relate to me, and she parented me. I learned and I developed.

I still flap, I still rock, I still toe-walk, and I still avoid social contact with others. I have obsessive interests, and I have a good deal of difficulty dealing with people. I can’t handle many noises or places that are visually busy. I have virtually no ability to interpret body language or other nonverbal cues. Perhaps this is why the University of Pittsburgh Medical Center Autism Research Program diagnosed me as autistic in 2002, with full knowledge that I was undiagnosed well into adulthood.

When I was young in the early 1970s, autism was not well known. Many autistics my age that were evaluated were given diagnoses like “childhood schizophrenia” or “mentally retarded.”

Being diagnosed as autistic as an adult is a lot more common than you might think. I know several autistic adults who were not diagnosed until adulthood (and I am not talking about those that were diagnosed with Asperger’s Syndrome — I mean autism). Ms. Pettengill may deny that we’re autistic, but we have the official diagnoses that say we are. I have no doubt that any of us, if we were infants brought in for evaluation today, would be diagnosed as autistic.

We’re here, whether people want to deny that we are what we are or not.

By DAN OLMSTED, UPI Health Editor   |   Aug. 1, 2005 at 4:19 PM

One of the core questions about autism is whether it actually has increased at startling rates or if it is just better recognized than it used to be.

Officials at the Centers for Disease Control and Prevention in Atlanta say they do not know the answer to that question but are trying to find out. Some medical experts say they think there really has been no upsurge in cases, just more public awareness and broader diagnostic criteria.

Don’t tell that to many parents of autistic children — parents such as Kendra Pettengill of Roseburg, Ore. She got in touch with UPI’s Age of Autism to explain why she finds that argument not only ridiculous, but downright revolting. Because of the clarity and power of her comments, we decided to run them at length.

In future columns we will print observations by those who think there is no autism upsurge. If you agree, please get in touch.

Here are excerpts from Kendra Pettengill’s comments:

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If I hear one more reporter repeating the mantra that part of the autism increase is better diagnostics, I will simply go mad. Anyone who has seen even one child with autism knows that not one of these kids would ever go undiagnosed.

We would have to believe that 10 or 20 years ago a parent would not have demanded to know why their child had regressed after being normal. Would not have demanded to know why they suddenly couldn’t relate to the outside world. Would not have demanded to know why they persistently rocked, flapped their hands, walked on their toes, bit themselves, pulled out their own hair and banged their heads to the point of serious damage. Would not have asked why their child had hundreds of meltdowns every day and could not stand a change in routine.

Would not have questioned why their child would not make eye contact, or screamed if they were touched or held. Would not have questioned why certain textures, foods, sounds, colors sent their children into a wild tailspin for no apparent reason. Would not have questioned why their child only ate three foods, but would chew on wood, sand, or fabrics. Would not question why their child could not speak at 2 years old, or why he could speak and then suddenly stopped abruptly never to speak again.

Parents, it would have to be believed, would not have questioned the litany of medical issues that their child with autism also faces. You would have to believe that schools and teachers also somehow missed all of this and these children managed school and just slipped through the cracks. To believe this you have never seen even a mildly autistic child.

No child with autism ever went undiagnosed.

I have been dealing with this for four years and I am still appalled that this has not been declared a national emergency. What if you announced tonight that 1 in every 150 children were being abducted from their beds every night? Parents would be screaming for the government, the police, somebody to do something. Well that is what is happening, except they are only taking our children’s brains and leaving the body behind.

Many scientists, doctors, teachers and parents know that the increase is real and it is most likely due to an environmental assault such as vaccines. Denial using the “changed diagnostics” line serves no one. It leaves parents like me on the fringe of society, dealing with a devastating disease with no assistance. It abandons a generation of children that could be helped in many ways to become contributing members of society.

I beg anyone who believes it is better diagnostics to find all the 20-, 30-, 40-something people who have autism and were somehow missed in the process of life. They must be out there somewhere — they went through 12 years of school, possibly college; married; got jobs, and were somehow missed as autistic.

Here is a hint. If they did all those things without being noticed by anyone, they are not autistic. This epidemic now is made up of kids who cannot do any of those things. They have no friends. For the most part they cannot even function in a typical classroom, let alone be missed in one. They can’t comprehend classroom directions; hence even in a typical classroom they need an aide to ensure they gather the proper information and make it through their day.

Every teacher or school person I speak to says with utter fear in their eyes, “Something is very wrong with our children.” We are being inundated with autism, ADD, ADHD, speech delays, tics, Tourette’s syndrome, asthma, insulin-dependent diabetes.

I look back on my entire life, and I cannot come up with one single person I knew in grade school, junior high, high school, college, the Air Force or workplaces who exhibited what even I would easily recognize as even mild symptoms of autism, let alone a full-blown case.

There was a blind guy in my school who also rocked a lot, but so does Stevie Wonder. He also had no other symptoms of autism and even wrestled on the varsity team. You would think if it has always been this prevalent that I could recall at least one, if not many, people who would be questionable.

No, none. But then again, I didn’t know anyone with asthma growing up, no children with ADD, ADHD, no kids or classmates with bipolar disorder or Tourette’s either. Come to think of it, I never knew anyone on anti-psychotic medications, nor do I remember prescription cubbies in the classrooms like they have now to monitor and dispense all the inhalers, Ritalin, Risperdal and the like.

The teachers and educators and parents are right. What is wrong with our children that 1 in 6 has a developmental disorder, including speech delays, tics and autism on the severe end of that?

Those claiming better diagnosis instead of a real autism epidemic need to get out of their research clinics, get their noses out of their papers full of numbers that apply to no one in America, get out of their ivory towers, get out of their government offices and look in every small clinic, classroom and parent support group across America.

They will instantly know that not only is there an epidemic, it is actually 100 times worse than the worst-case scenario they could dream up in their worst nightmare. The denial of the numbers does not make them go away and cannot reduce them.

No child with autism has ever gone undiagnosed in any setting, in any decade, in any loving home, caring community or concerned school or classroom. Only in their unrealistic dream worlds can these “experts” continue to deny the millions of afflicted that continue to grow at record pace.

It is time this is stopped. Autism is an epidemic and a national crisis.

By DAN OLMSTED, United Press International   |   July 25, 2005 at 6:32 PM

Part 1 of 2. Perhaps we should have checked with the Centers for Disease Control and Prevention before setting off to look into the prevalence of autism among the Amish.

Nothing about the Amish — who seem to have low rates of both vaccinations and autism — relates to anyone in the rest of the country, the CDC director told us last week.

Federal health officials called a news briefing July 19 to reassure the public about vaccine safety — and to remind parents the controversial mercury-based preservative that some say caused their children’s autism is no longer used in vaccines. Besides, they said, all scientific evidence weighs heavily against any connection between the preservative, called thimerosal, and what many suspect is an epidemic rise in the autism rate in the past decade.

At the briefing, we asked Dr. Julie Gerberding, the CDC’s director, this question: “Have you looked at autism in a never-vaccinated population in the United States, and if not, why not?”

Here is her answer:

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In this country, we have very high levels of vaccination as you probably know, and I think this year we have record immunization levels among all of our children, so to (select an unvaccinated group) that on a population basis would be representative to look at incidence in that population compared to the other population would be something that could be done.

But as we’re learning, just trying to look at autism in a community the size of Atlanta, it’s very, very difficult to get an effective numerator and denominator to get a reliable diagnosis.

I think those kind of studies could be done and should be done. You’d have to adjust for the strong genetic component that also distinguishes, for example, people in Amish communities who may elect not to be immunized (and) also have genetic connectivity that would make them different from populations that are in other sectors of the United States. So drawing some conclusions from them would be very difficult.

I think with reference to the timing of all of this, good science does take time, and it’s part of one of the messages I feel like I’ve learned from the feedback that we’ve gotten from parents groups this summer (in) struggling with developing a more robust and a faster research agenda, is let’s speed this up. Let’s look for the early studies that could give us at least some hypotheses to test and evaluate and get information flowing through the research pipeline as quickly as we can.

So we are committed to doing that, and as I mentioned, in terms of just measuring the frequency of autism in the population some pretty big steps have been taken. We’re careful not to jump ahead of our data, but we think we will be able to provide more accurate information in the next year or so than we’ve been able to do up to this point. And I know that is our responsibility.

We’ve also benefited from some increased investments in these areas that have allowed us to do this, and so we thank Congress and we thank the administration for supporting those investments, not just at CDC but also at NIH and FDA.

—

Although the briefing was open only to members of the media, listeners who cribbed the secret password code could dial in from the around the country. There was a lot of cribbing.

Afterwards, I received several comments, all to the same effect, about Gerberding’s answer. Here are three, the first from an analysis of the briefing at craigwestover.blogspot.com:

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If the government’s contention is correct (that thimerosal doesn’t cause autism), the rate of autism among the Amish, who do not vaccinate their children, should be roughly the same 1 in 166 found in the general population. That is not the case. …

Dr. Gerberding took the question with obvious reluctance. … She noted that vaccination is at a high level and it’s hard to find such a population that doesn’t vaccinate and difficult to do an accurate — emphasis on accurate — study. The problem is that genetics of a group — “like the “Amish” — might influence the study, making a conclusion difficult. Good science takes time.

—

Via e-mail:

I just thought you’d like to know that after you finished your question regarding studying unvaccinated children there was a really long pause — 11 seconds, to be exact. And then there was something about fractions — denominators and numerators. I thought for a moment Dr. Gerberding was going to throw in the word “terminator” — just for a second. Gosh, I haven’t heard anything that mind-numbing since I worked at a law firm.

—

I read the ridiculous response to your question from Dr. Gerberding — apparently, the genetics of Danes, Japanese and Brits are fine for vaccine studies — but those Amish genes are nothing like anyone living in the United States. Why would anyone look at them? Can you really keep a straight face while these bureaucrats transparently dodge perfectly reasonable questions?

Maybe they study these “other” populations because these countries didn’t full scale-vaccine-assault their toddlers so the damage looking at one vaccine doesn’t show up.

—

Whatever the merits of studying the Amish — or of Gerberding’s response — there is another place the CDC could look to find children who were never exposed to thimerosal: its own database. One person who did look says he found something disturbing — he called it “Generation Zero,” which we’ll describe in part 2.

By DAN OLMSTED, United Press International   |   July 19, 2005 at 11:45 PM

A U.S. Congressman who is a medical doctor said Tuesday he will seek funding to study the autism rate among the largely unvaccinated Amish.

“I want to get somebody to do a study on that community,” Rep. Dave Weldon, R-Fla., told United Press International. “I would like to get funding and have somebody go into the Amish community and do a survey.”

The head of the Centers for Disease Control and Prevention said Tuesday, however, that an Amish study would not yield useful information.

Weldon’s comments came in response to a UPI investigation that found an apparently low level of autism among the Amish. Some parents of children with autism believe that a mercury-based preservative in vaccines called thimerosal caused the disorder, so looking at the autism rate among a group of unvaccinated children would test that theory.

“The reason it’s very intriguing,” Weldon said, “is you go into the Amish country and you’ve got Amish people and non-Amish people and they sort of live among each other.

“So it would be very easy to go into villages and do samplings and look at not only autism, but at ADD (Attention Deficit Disorder) and ADHD (Attention Deficit Hyperactivity Disorder), and then go into the surrounding non-Amish and look at the autism rates.”

Weldon made his remarks following a news briefing by federal health officials and doctors, at which they reiterated the safety and importance of childhood immunizations. They noted that thimerosal had been phased out of childhood vaccinations beginning in 1999.

Dr. Julie Gerberding, the CDC director, said scientific studies do not show a link between thimerosal and autism.

Asked by UPI whether the government had studied the autism rate in a never-vaccinated population, she replied that it is difficult to find such groups because the U.S. vaccination rate is so high. Also, she said, “It’s very, very difficult to get an effective numerator and denominator and to get a reliable diagnosis.”

She also said, however, that parents have been pushing for faster research and “I think those kind of studies could be done and should be done.” She suggested that the Amish are not the right group.

“You have to adjust for the strong genetic component that also distinguishes, for example, people in Amish communities who may elect not to be immunized. To draw any conclusions from them would be difficult,” Gerberding said.

Weldon responded that the isolated gene pool in the Amish community would not invalidate a study because autism is not solely a genetic disorder.

“That’s operating under the assumption that it’s all genetic,” he said of Gerberding’s comments. Weldon, a critic of the CDC’s handling of autism research, said a strong outside factor is evidently at work because the number of autism cases has exploded in the past decade.

“You would just look at the incidence,” he said of an Amish study. “If you can find say, a thousand (Amish) families with, say, an average of four children, that’s four thousand kids and their autism rate is say, X.

“Then you do a sampling in the surrounding community with the same age match and controls, and (if you find) the incidences are 3X or 4X, that would be a valuable piece of information that we could potentially publish” in a scientific journal.

“I don’t know if you could generate a statistically significant sample, but at least you could get some information that might point in that direction.”

Weldon did not say how he would seek to fund such a study, but he is a member of the powerful House Appropriations Committee. Last month, a top HHS official told a parents’ group that he would consider whether to fund such a study through the National Institutes of Health, and several sources told UPI that independent research scientists are now considering similar studies.

Weldon attended the news conference at the Health and Human Services building in Washington as a spectator. Afterwards, reporters spent more time interviewing him than they did the health officials, in part because there was little time for questions and in part because the officials offered no new information.

Reporters suggested that the briefing was called to overshadow a rally at the Capitol Wednesday at which parents will back Weldon’s bill to remove thimerosal from all medical products; on Tuesday, Sen. Chuck Hagel, R-Neb., introduced a companion bill in the Senate.

An ABC television reporter asked the first question at the HHS briefing: “I’m wondering why we’re all here today. I’m not hearing any new information.”

“We’re here to talk on an issue that we do receive questions on,” a spokesman said, but did not directly deny that the briefing had been timed to head off the parents’ group.

By DAN OLMSTED, United Press International   |   July 18, 2005 at 1:57 PM

Here, as promised in our last column, is an account by one mother of her child’s autism. The mother and daughter, Libby and Isabella Rupp of St. Paul, Minn., were pictured with a front-page article in The New York Times last month about the debate over vaccines and autism.

The picture caption reads: “Libby Rupp of St. Paul, whose 3-year-old daughter, Isabella, has autism, says she is not convinced by studies that say there is no link between autism and childhood vaccines that include mercury.”

But why isn’t she convinced? Rupp says the brief comments attributed to her in the article — a total of 21 words spread over three sentences and a fragment — gave no hint of how she came to suspect vaccines triggered Isabella’s autism. The article was titled “On Autism’s Cause, It’s Parents vs. Research.”

Rupp also said the article portrayed treatments that she and other parents have used successfully as both ineffective and dangerous. Most controversial: Chelation (key-LAY-shun), a doctor-supervised process of flushing heavy metals out of a child’s body.

The theory behind chelation is that if the mercury preservative in vaccines called thimerosal is the problem, removing it is a big part of the solution.

—

We’ve now had two immunologists concur that (Isabella’s autism) was a vaccine reaction. It was within hours. She was different.

It was her first set of vaccines at 2 months, and then it got worse after every single set of vaccines and then at 9 months, I finally said no more.

She was a kid who had totally normally bowel habits but immediately (after vaccinations) she got diarrhea, and that lasted for a couple of months and she went from being a happy baby to crying all the time. And not just crying, screaming.

She stopped sleeping. She would wake up every 15 minutes all night long. She still does.

Prior to her vaccines she had rolled over repeatedly at six weeks of age. My entire family witnessed this at a big family reunion. It’s not just me making this stuff up — numerous people saw her. She never did it again after her vaccines until she was 10 months old.

She used to vocalize with me. If I would sing her lullabies, she would make noises, and when I would stop singing, she would stop making noise. That went away. We never heard another goo-goo gaw-gaw after that, none of those baby noises.

At two months, it was sort of slowly happening. By four months, she got another vaccine and that is when we clearly realized, Oh my gosh, this kid isn’t doing anything. Her DTaP (diphtheria-tetanus-pertussis) at four months had mercury in it.

That’s what makes me the most upset — if they had taken them all off the shelves she would never have gotten it. (In July 1999, the Centers for Disease Control and Prevention and the American Academy of Pediatrics recommended that mercury-containing childhood vaccines be phased out by manufacturers but did not order a recall.)

The other thing is I had the flu shot while pregnant, and again while nursing, so she would have gotten thimerosal from both of those shots. Interesting enough, I had a pretty normal pregnancy until all of a sudden Isabella stopped moving and I had to be monitored every time I was in there (the doctor’s). I don’t know the exact timing, but I did get a flu shot (about then).

So I have to question whether the thimerosal in the flu shots I got had anything to do with that. I definitely think it would have predisposed her to a larger reaction when she got vaccinated later.

I was very upset because I have doctors who have backed me up on it, yet this (New York Times) piece made me sound like a lunatic, and that I’m hurting my child and just desperate for hope.

It never mentioned, once, the amazing improvement that my daughter has shown on chelation and the metals that were coming out, so much so that the Mayo Clinic was concerned about it.

They never once talked about the fact these kids are actually recovering when you take the mercury out of them. That’s where I didn’t think it was fair at all. OK, you can report the other side, there are lots of people who disagree with us, but the fact is there are thousands of children who are undergoing this treatment that are getting better.

And the other thing is they flat-out said chelation is dangerous. Our county chelates children with lead poisoning. I have had the county out to my house numerous times. They said if they found a kid with high lead, they put them in the hospital and they chelate them. How is this that dangerous if our county is doing that to children?

We are very open with our doctor at Mayo and have told him that we are chelating. He’s said on various occasions that he is OK with that; he doesn’t necessarily agree but he is OK with our doing it.

He also has repeatedly said he doesn’t understand the improvements my daughter is making — “These kids don’t improve.” When we’re in there, he is sometimes speechless about the improvements in her and can’t explain it from what he’s doing. His patients don’t improve like that.

He has prescribed supplements like very high doses of B vitamins, Co-Q10, Vitamin C, Vitamin E. My daughter has a mitochondrial disorder, so she takes something called a mitochondrial cocktail which is the commonly accepted treatment for this disorder. It includes alpha-lipoic acid, which interestingly enough chelates mercury. I mentioned that to the doctor; I don’t think he knew that.

He told us when we first came down there that he’s seen mercury poisoning and this isn’t it, but he’s repeatedly asked us if we live on a toxic dump, because we bring him our tests and we say, “Look what’s coming out of her.”

We’ve been chelating her since she was 15 months old and she is now 4. She just started talking in February. She does imaginative play. She does pretend play. She has empathy. She plays with toys appropriately. She likes to play word games — if you sing, “Twinkle, twinkle little shoe,” she’ll laugh. Things that autistic kids just don’t do — and at this stage she’s doing more and more typical things.

We’ve had a dog for her whole life, and before she was oblivious to it, and now she just can’t get enough of him, chasing him around and imitating him. She today — unfortunately — was licking her foot. I said, “What are you doing,” and he was licking his foot. Constantly imitating things. I’m very optimistic, I’m always hopeful, but I never thought I’d see that.

When I tell this to anyone else, their immediate reaction is, “There’s mercury in vaccines? Why would they do that?” But when you tell this to a legislator, or to a government official, or a doctor, they’ll say, “It doesn’t make any difference.”

What I don’t understand is when you tell the average person this, they’re stunned and they’re concerned. You tell someone who should know better, and they don’t think it’s any big deal.

I’m a CPA and an MBA. My husband is an executive. We’re not stupid people. That’s what frustrating. And even if we were, parents know their children better than anyone. If they think there’s a correlation, people should listen to them.

—

There you have it, dear reader. Make of it what you will. The Institute of Medicine — part of the National Academy of Sciences — has concluded that a vaccine-autism link is so far-fetched it is time to put research money into more promising areas. We are told only one scientific study of chelation is under way — with parents’ funding.

That prompts the question of what mainstream science is doing instead to find causes and cures for autism, especially “environmental” causes broadly defined as toxins that come from outside the body.

We will pursue that question in future columns. Before leaving The New York Times to its own devices, though, we must point out the paper has yet to correct several factual errors in its article cited by SafeMinds, a leading group of parents who suspect mercury as the culprit in the autism epidemic.

That includes the spelling of the name of the president of the group, Lyn “One N” Redwood.

We intend to become really annoying and keep bringing that up until the newspaper of record fixes it.

By DAN OLMSTED   |   July 13, 2005 at 1:55 PM

Part 1 of 2. Regular readers of this column (and we thank you) know that we value a back-and-forth approach. Since beginning this open-ended series six months ago, we have paused several times to let readers speak, and our direction has been shaped by their responses.

Lately, we have been pursuing the vaccine question, unable to satisfy ourselves the case is completely closed on whether the mercury-based preservative called thimerosal triggered a sharp rise in autism diagnoses in the 1990s.

Partly, that is due to our own research among two populations — homeschoolers who do not vaccinate their children, and particularly the Amish, who have a religious exemption from the mandatory childhood-vaccine schedule.

While acknowledging our limitations, we’ve stated the facts as we found them — little evidence of autism, certainly nowhere near the 1-in-166 rate diagnosed in the rest of the population.

This has led some readers to suspect our mind is made up, whereas we view it as wide open. If better minds than ours would simply (and quickly) study the rate of autism in such populations — a task that to date has been oddly omitted from the millions in grants and thousands of studies on autism — we think the matter could be brought to a decisive conclusion.

If never-vaccinated children have the same rate of autism as everyone else, isn’t the case closed? Your honor, we are willing to stipulate that it is.

Another reason we keep talking about vaccines is … that is what so many parents of autistic children talk about when they get in touch with us. We have in fact formed one conclusion: It is important to listen to what parents say about their own children. This is a widely accepted concept — but honored in the breach when it comes to much of the mainstream media’s coverage of autism.

Strangely, “Father Knows Best” applies metaphorically more than factually: Paternalistic medical experts and scientific bodies evoke godlike awe in much of the media, whereas real-life fathers and mothers get the brushoff. Yet the mainstream media’s role is to present all sides and — if they have any agenda at all — to question authority, not comfort it.

That was our point in critiquing an article in The New York Times last month, headlined “On Autism’s Cause, It’s Parents vs. Research.” Because the Times’ front page sets the agenda for so much of the media, how it treats controversial topics matters inordinately.

The article clearly and unapologetically gave more weight to a select group of scientific studies — “research” — than to parents who doubt that research.

That is not necessarily a problem, but why do parents doubt that research? Because, in many cases, they think they witnessed a vaccine reaction that left their child autistic. Of course, that proves nothing; the well-established principle is temporal association cannot establish causality.

True enough, but being shot with a gun and dropping dead are widely viewed as associated both temporally and causally, absent compelling proof to the contrary. Some parents consider the association between immunizations and autism about that clear — at least when it pertains to their child. That does not mean they are right, but it suggests they should be heard in enough detail for the reader to decide whether they are making any sense.

That was our problem with the Times’ piece. Where were the parents’ accounts of what they saw and believed, accounts that might explain their objections to research that says otherwise? Nowhere.

Of course, not every parent thinks he or she has witnessed a link between vaccination and their child’s autism. Many if not most reject the idea entirely, but “the literature” — my inbox being one example — is full of just such striking accounts.

You cannot write about why parents object to research clearing vaccines as a cause of autism without addressing that. The Times did.

Those who have complained about the Times’ story have heard from the newspaper’s Public Editor Byron Calame. Here, verbatim, is what he told representatives of the group A-CHAMP:

—

I have carefully reviewed your e-mail and spent several hours with the editors and reporters who prepared the article, who have provided me with explanations and information to answer the questions your e-mail raised in my mind.

This has left me convinced that the article isn’t intellectually dishonest. Nor are the omissions staggering. Nor is there a pervasive editorial bias. I find the article fair and accurate, even though I understand why it could disappointment a group such as yours with its strong point of view on the controversy that surrounds autism today.

It seems to me you may have a misconception of what The Times regards as fairness and balance in an article. There’s a general obligation to listen to all sides in a controversial situation, which I think the reporters clearly did in this case. But when it comes time to write the article, it doesn’t necessarily mean 20 inches for one side and 20 inches for the other. I find your concern that all the documents and communications you provided to the reporters didn’t get into the article a possible reflection of this numbers-oriented perception of balance.

Readers of The Times expect to get the most meaningful and significant information presented in the most efficient way possible. The Times expects its reporters and editors to work hard and smart to gather a lot of information — and select the information that is the most meaningful and significant to put in their articles.

All studies and documents aren’t of equal value, so they don’t necessarily deserve an equal amount of space in a Times article. The reporters were aware of the three government reports or sets of recommendations you cited and had decided — correctly, it seems to me — that they didn’t merit inclusion in the article.

As for your request for a meeting, I would be willing to meet in person or on a conference call with up to three representatives of A-CHAMP for 45 minutes on a mutually agreeable date in August. I have requests for meetings from two other groups, which I would intend to schedule for the same day.

—

Whatever you may think of the Times story, it is interesting to hear a complete, cogent defense of it, wouldn’t you agree?

We respectfully suggest that was the Times’ fundamental lapse — not presenting enough of the “vs.” argument to let readers form their own conclusion about the parents’ case or how they came to believe it.

That is what we propose to do in Part 2 of this discussion: let the parent of an autistic child, a parent quoted in bits and bites in the Times piece, speak for herself. Verbatim. In toto. At length.

You can decide what to make of it. And we will print what you say.

By DAN OLMSTED, United Press International   |   July 11, 2005 at 2:36 PM

Last week this column critiqued a June 25 article in The New York Times, “On Autism’s Cause, It’s Parents vs. Research.” Subsequently we were forwarded copies of two letters that a parents group sent to the Times’ public editor.

One letter accused the paper of a pattern of unfair coverage up to and including the June 25 piece. The second was a demand for several corrections to that article. Both letters, from the group SafeMinds, argued the same point: The parents’ view, that a mercury-based preservative used in vaccines may have caused an autism epidemic, did not get a fair hearing.

Anyone in the news business knows that accusations of bias and hidden agendas flow freely, usually to the same effect as water off a duck. My weekend inbox, for instance, brought a letter chastising me for ignoring fraud in the 2004 presidential election and advised, “Please do your job or seek alternative employment.”

Noted, but a claim that a story contains outright errors of fact makes journalists (and their editors) sit up and take notice. Usually.

SafeMinds said the Times misspelled the name of Lyn Redwood, the group’s president. Lyn “One N” Redwood told me she did not even bother mentioning that in the letter to the editor because it was minor compared to the errors she wanted addressed. Perhaps, but most journalists hate misspelling someone’s name about as much as they hate anything. Because names are so easy to get right — all you have to do is ask — getting names wrong casts a shadow of doubt on more nuanced matters if someone decides to dispute them, particularly someone whose name was misspelled.

Another mistake SafeMinds called almost too minor to matter was in a sidebar list of six studies that accompanied the article. Five of the six found no link between autism and thimerosal, the aforementioned mercury-based preservative. That certainly is a strike against the parents’ argument.

One of the accompanying photographs of the actual scientific papers, though, is wrong, SafeMinds said. It is a study of the MMR vaccine, which has nothing to do with the autism-thimerosal debate.

Another issue the parents raise is the Times’ description of reports collected by the Centers for Disease Control and Prevention in Atlanta. The Times article said they are “complaints sent to the disease control centers by people who suspect that their children were harmed by vaccines.” In other words, by the “parents vs. research” who assert vaccines caused their children’s problems.

In fact, SafeMinds said, the overwhelming majority of those “complaints” — actually called adverse-events reports — come from vaccine manufacturers and healthcare providers, with only 4.2 percent coming from parents or patients. (The letter provides a link to the CDC statement: www.cdc.gov/mmwr/PDF/ss/ss5201.pdf. The relevant paragraph is on page 6.)

What did the Times say in response? “I don’t see any need for any corrective action,” Byron Calame, the Times public editor, told SafeMinds. Alas, he spelled it “SafeMind.”

Here is where it gets really strange. The article begins with an exchange between two parents: Kristen Ehresmann, a Minnesota state health official with an autistic child, and Libby Rupp, a parent who suspects vaccines caused her daughter’s autism.

Rupp told us the conversation actually took place with another official — that the reporter got it wrong. The net effect, she said, was to make her argument look bad, because it pitted her against an “expert” who also had an autistic child. (The official with whom Rupp said she actually spoke would not help — “I don’t talk to the media,” she said.)

This gets awfully complicated. Ehresmann insisted to me on Monday she actually did have this conversation with Rupp. Also, she noted, the Times double-checked it with her. The public editor said he will look into it when the reporter, who is on leave, returns.

Why do we care about such trivia as how people spell their names, which study belongs where, who sends the CDC “complaints” about vaccines and who spoke to whom about their child’s autism?

Because opinion matters, but facts matter more. In the debate about what causes autism, it is time to insist on them — and not just from parents.

By DAN OLMSTED   |   June 28, 2005 at 1:14 PM

WASHINGTON, June 28 (UPI) — Where are the unvaccinated homeschooled children with autism? Nowhere to be found, says a doctor who treats autistic children and is knowledgeable about the homeschooled world.

“It’s largely nonexistent,” Dr. Jeff Bradstreet told UPI’s Age of Autism. “It’s an extremely rare event.”

Bradstreet treats autistic children at his medical practice in Palm Bay, Fla. He has a son whose autism he attributes to a vaccine reaction at 15 months. His daughter has been homeschooled, he describes himself as a “Christian family physician,” and he knows many of the leaders in the homeschool movement.

“There was this whole subculture of folks who went into homeschooling so they would never have to vaccinate their kids,” he said. “There’s this whole cadre who were never vaccinated for religious reasons.”

In that subset, he said, “unless they were massively exposed to mercury through lots of amalgams (mercury dental fillings in the mother) and/or big-time fish eating, I’ve not had a single case.”

Bradstreet said his views do not constitute a persuasive argument that low vaccination rates are associated with low rates of autism, but it is worth studying.

“That’s not yet science,” he said. “It doesn’t rise to the level of a powerful observation. It’s a place to say, OK, well that’s interesting, what does that tell us?”

About 2 million children are being homeschooled in the United States. The number of those unvaccinated is unclear, but judging by the school opt-out rates in some parts of the country where there is more concern about vaccinations, it could be 3 percent or more. For example, in Oregon’s Lane County roughly 2,000 students out of a total of 51,000 have exemptions, about 4 percent.

Applying that ratio to the U.S. homeschooled population would equal 80,000 children. At the current autism rate of one in 166 children, several hundred would be expected to have autism.

Bradstreet said he has tried to persuade epidemiologists to study that subset of the homeschooled population, but they expressed doubts the results would apply to broader groups.

“I said I know I can tap into this community and find you large numbers of unvaccinated homeschooled, 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.”

He said every researcher he contacted refused to investigate, “because it would not have any power to change people’s opinion — you could never apply it to the next population.” He said critics could assert that homeschoolers are a unique group and that parents might choose to homeschool a child “because they knew he was different,” although neither would explain the lower autism prevalence.

He also said he thinks homeschoolers would be a better population to examine than a genetically and culturally isolated community such as the Amish.

“The purists would say that’s too odd of a group,” Bradstreet said, and added that he agrees. “You can’t draw conclusions from that kind of population.”

His comments referred to the series of reports in The Age of Autism on an apparent low prevalence of the condition among the Amish, most of whom are unvaccinated.

Monday, this column reported that a top official of the U.S. Department of Health and Human Services told parents he will consider whether to launch a study of autism rates among the Amish or other unvaccinated populations. Such a study apparently has never been done.

Bradstreet said he thinks that no matter what unvaccinated population researchers study, “it would be a rare event” to find autism. His views fall into the distinct minority among scientists and medical experts, who say a link between vaccines and autism has been discredited. A panel of the prestigious Institute of Medicine — part of the National Academy of Sciences — said last year that research should now go to “promising” areas.

The vaccine theory centers on the hypothesis that a mercury-based preservative called thimerosal, used in an increasing number of childhood vaccinations in the 1990s, triggered a huge spike in diagnoses.

Bradstreet’s linking of autism to mercury in fish and maternal dental fillings is also rejected by mainstream medical experts. The comments do, however, echo one aspect of UPI’s reporting on the Amish.

A doctor in Virginia said he was treating six unvaccinated Amish children, four of whom had high levels of mercury in their bodies that he thinks triggered their autism. He suspects the exposure came from coal-fired power plants, which emit mercury as a byproduct.

Bradstreet said he realizes his views on vaccines, and his own son’s autism, expose him to charges he is seeing what he wishes to see, but he argues that government researchers harbor a bigger conflict of interest because the government mandates vaccinations and vouches for their safety.

“The problem for them is even more than the problem for us,” he said. “Many of us who are concerned about vaccines and the role they’re playing in the immune system and autism are traditionally trained physicians who vaccinated our kids and are only reluctantly being forced, when it was thrown in our face, to say there’s got to be something wrong with vaccines if it did this to my kid.

“So in that situation, even though we would be accused of being more biased, we are probably more objective because we were believers.”

By DAN OLMSTED   |   June 27, 2005 at 4:26 PM

WASHINGTON, June 27 (UPI) — A top U.S. health official is considering whether to launch studies of the Amish — and perhaps other unvaccinated groups — in response to United Press International’s articles about a low prevalence of autism in that community, according to several people who spoke with him last week.

William F. Raub of the Department of Health and Human Services suggested this possibility at a private meeting at HHS headquarters in Washington, participants said. His comment adds to recent signs that some federal officials monitoring autism research and funding have not ruled out a possible vaccine link.

Raub is principal deputy secretary for the Office of Public Health Emergency Preparedness. He has held a number of key government posts, including acting counselor for science policy to HHS Secretary Mike Leavitt and deputy director of the National Institutes of Health.

His comments came after the group, mostly parents of autistic children, brought up UPI’s series on the apparent low prevalence of autism among the U.S. Amish population. Most Amish parents do not vaccinate their children.

A full-scale epidemiological study of one or more unvaccinated populations could help determine whether there is a link between childhood vaccinations and autism. The parents who met with Raub think there is, while the medical establishment firmly rejects that theory.

The parents said Raub described UPI’s findings as “interesting” and discussed several ways to launch a study. One alternative he described was for the National Institutes of Health to initiate a request for applications, known as an RFA, from researchers interested in the topic.

The parents emphasized that Raub made no commitment to such a study but said his attitude seemed open-minded and attentive during the two-hour meeting.

An HHS spokesman did not respond to UPI’s request for an interview with Raub or confirm the parents’ description of the meeting.

If such a study were done, it would apparently be the first to look at a specific group of unvaccinated individuals to determine the prevalence of autism. The Centers for Disease Control and Prevention in Atlanta has reported the rate of autism spectrum disorders is now one in every 166 children born in the United States.

UPI’s reporting turned up only a handful of autism cases among the Amish, and two doctors who treat thousands of Amish children said they were aware of only one case between them. That child had been vaccinated, as had three others identified by UPI. A minority of Amish parents have begun allowing their children to receive routine immunizations.

A doctor in Virginia said he was treating six Amish children with autism, none of them vaccinated. He attributed the disorder in four of the cases to environmental mercury pollution.

Even the idea of doing more research into a possible vaccine-autism connection has become controversial. Last year a panel of the prestigious Institute of Medicine — part of the National Academy of Sciences — said there is no link and recommended that future research go to more “promising” areas.

Yet there are signs some high government officials are withholding final judgment on the autism-vaccine argument, which centers on a mercury preservative called thimerosal that was used in an increasing number of childhood vaccines beginning in the early 1990s.

Dr. Julie Gerberding, the CDC’s director, told Congress last year she is keeping an “open mind” about a possible link. She repeated that sentiment in an interview with NBC television this past spring, a year after the IOM called the case closed. The CDC recommends the childhood-immunization schedule, which states then adopt.

Meanwhile, participants in recent meetings have described some congressional committee staffers, state government officials and White House aides as remaining concerned about the issue.

“All over Capitol Hill, we encountered thoughtful, intelligent, compassionate people — Republicans and Democrats — who seem truly committed to getting the difficult answers that the American people deserve,” author David Kirby wrote over the weekend on huffingtonpost.com. Kirby is the author of the new book “Evidence of Harm” about the vaccine-autism controversy.

“Call me naïve,” he added, “but I have great confidence in their integrity and resolve.”