On Friday, the CDC released its long-anticipated autism figures, showing that the average rate of autism spectrum disorders (ASD) among eight-year-olds increased by nearly 60 percent between 2002 and 2006, with almost one percent of US kids affected.
Also on Friday, the nation's top autism research coordinator said that better diagnosis and reporting could not "explain away this huge increase," and that "there is no question that there has got to be an environmental component here."
He added that some ASDs may be preventable, that some children could recover from the disorder, and that a virus might conceivably play a role in some autism cases.
According to the latest CDC figures, the ASD rate at 11 sites among eight-year-olds in 2002 (kids born in 1994) was 60-per-10,000, and 94 per-10,000 in 2006 -- among kids born just four years later, in 1998. Some of this increase was explained by better access to school records and other factors, the CDC said, though it added that a "true increase" could not be ruled out.
Some of the new figures were quite staggering. For example, the reported rate among all eight-year-olds in Arizona skyrocketed by 95 percent in just four years. Also in Arizona, among boys, the ASD rate reached 189-per-10,000. It also reached 193-per-10,000 in Missouri -- or nearly two percent (one in 50) of the total.
Another surprise was the difference between some of the racial and ethnic categories. In 2006, the rate among non-Hispanic white children was 102-per-10,000, but among black children it was 76-per-10,000, a 34 percent difference, and among Hispanic children it was 61-per-10,000, a difference of 67 percent.
Inexplicably, the rate among Hispanics in Alabama actually plummeted during the period in question, by 68 percent, from an already low 19-per-10,000 in 2002 to an almost rare 6-per-10,000 in 2006. Meanwhile, with the exception of Arizona, the CDC said, "prevalence among Hispanic children did not change significantly within any of the other10 sites."
So what do these increases mean? I put that question to Dr. Thomas Insel, Director of the National Institute of Mental Health and Chair of the federal government's Interagency Autism Coordinating Committee (IACC), tasked with recommending funding priorities for autism research and services. Was the increase simply an artifact of better diagnosis and reporting? Or could there be an actual increase in the numbers and, if so, wouldn't that necessarily implicate environmental factors in ASD?
I was pleasantly surprised by Dr. Insel's frankness.
"As far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected," Dr. Insel told me in a telephone interview on Friday. He said factors such as better ascertainment "don't really explain away this huge increase" and that "you really have to take this (increase) very seriously -- from everything they are looking at, this is not something that can be explained away by methodology, by diagnosis."
He added that he never saw a single case of autism during his training in the mid-1980s, including a full year's rotation in child psychology. "I wanted to see children with autism. I couldn't find them," he said. "Now I wouldn't have to go any further than the block where I live to see kids with autism today."
So if there is an actual increase in incidence year to year, I asked, wouldn't there necessarily also have to be an environmental component to at least some cases of autism?
"Yes," Insel said. "I don't think anybody is arguing that it is 100 percent genetic. And I don't think in those terms, exactly, that it's either genetic or it's environmental. From my perspective, it's almost always going to be both. And the only question is: How do you nail down this interaction, how do you go after it?"
But, he added, "There is no question that there has got to be an environmental component here."
Dr. Insel also suggested that there may be autism "clusters" around the country, which would also implicate environmental factors. "It could be that the Somali story in Minneapolis is an important geographic cluster," he said. "It could be that there are clusters that have actually been indentified in California. It's a little too early -- and I don't think the data are published -- but I have seen some data in unpublished form that would suggest that that may turn out to be the case."
Finding the environmental exposures that can trigger autism is essential, Insel said, because "the real goal here is to think about prevention -- what we are really after at this point is driving the numbers in the opposite direction, so instead of a tenfold increase, you can we see a tenfold decrease."
But does he think that is possible?
"If you could identify the factors that are really pushing this, then I think you can begin to bend the curve," he explained. "I think I am arguing, probably, against the wave of the people that are in this field. But I think that we're approaching autism as if it is a single thing, as if it is a syndrome that will have one cause, one treatment."
But, Insel said, "It's quite believable to me that there are many children who develop autism in the context of having severe gut pathology, of having autoimmune problems, of having lots of other problems. And some of these kids really do recover. And that is quite different from the autism that was originally described in the 1940s and 50s -- where it looks like you have it and you are going to have it for the rest of your life."
Dr. Insel hinted that genetic research into autism is about to undergo a major transformation, from looking at genetic sequencing, "which is what we have been doing for the last decade," to looking at the "emerging field of epigenetics, or epigenomics." He defined this as "looking at how the DNA is bound up with all kinds of proteins. That is largely affected by experience, or by environment. Some of it is probably hardwired, but a lot of it has to do with exposures, particularly early in development but even, as we are learning, even after birth "
I also asked Dr. Insel about the recent discovery that a retrovirus, XMRV, had been found in 98 percent of all patients with chronic fatigue syndrome. Some researchers say the virus may be implicated in autism, as well.
"We are hot on that, and I wish I could tell you more," Insel said. "All I can tell you is that we have an intramural program here which is kind of our home team, which has seen about 400 kids with autism over the last couple of years. And they have been looking at regression; they've been looking at recovery." He said the researchers "jumped on the XMRV thing even before it was published."
Dr. Insel said that he had heard that researchers at the University of Nevada had identified XMRV in about 40 percent of ASD children studied. "I have been trying to track that," he said. "There is a paper that has been submitted, but I haven't been able to get it, and I don't know what the data look like. But I think this is really interesting."
Why? Because, he said, "If we could just find a small group, and the opportunity to begin an antiretroviral treatment regime, that could be terrific. That would be the kind of thing we're really looking for in this field, is finding the subgroups that might have specific therapies that would make a difference."
Finally, I asked if the IACC would reconsider its decision to reject vaccine research, given these new data, and in particular, Hepatitis B coverage -- which increased from about 27 percent to more than 90 percent between 1994 and 1998.
"I think what you are going to see with this update is that there is a recognition that we need to look at subgroups who might be particularly responsive to environmental factors," Dr. Insel said. And with that tantalizing statement, he unfortunately had to go to a meeting.
But, I will interview the federal official again after the New Year and take him up on his offer to "start there with our next conversation." So stay tuned.
Meanwhile, activist parents are hopeful that these new numbers will finally bring a sense of urgency to autism.
"As accurate data emerges that cannot be denied, people who say there is no epidemic -- such as AAP, Pharma, CDC and WHO -- will no longer be able to pursue their denialist agenda," said Robert Krakow, a New York attorney and father of a boy with autism. "We saw a major development in that process today -- however grudgingly it was conceded in the CDC pronouncements," he said. "When the smoke clears the truth will emerge about who s engaging in 'denialism.' The problem is the delay in clearing the smoke -- 10-to-30 years for this process -- is just too painfully long."
For a complete transcript of the interview with Dr. Insel, please click here.
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I'm not sure what to say for Insel. His actions do not agree with his words.
"Pesticide link to autism suspected": http://articles.latimes.com/2007/jul/30/local/me-autism30
Once upon a time we were supposed to trust bankers...
"You can't look at the date of 2006 and conclude that there should have been a decline in autism rates from the removal of thimerosal."
Is this your professional oppinion, we also can't look at the rate from 2001 to 2008 and now 2009, the data exists, it might not been officially released. Now to justify your position your claiming the scientists studying this are witholding data current data? It's being funded by the government here in the US, places like Briton and Japan just to name a few. So now your getting into this whole WORLD WIDE conspiracy of witholding data? What the scientist with childeren with Autism don't care is that your theory too?
You didn't even bother to address the Food and Water quality issues based on Allergies, why is that? Me and my crazy ideas it could be based on Hyper Allergic reactions the mother could have had a severe allergic reaction while pregnant or the father had one while his sperm developed? Did I even say, OH NO, don't look at thimerosal, please please don't look there?
NO I didn't, I think important to try to stay objective and consider all possibilities becasue it matters to me? Ask yourself why does ONLY looking at thimerosal sound like a good idea?
Really, why?
http://www.ageofautism.com/2009/12/mark-blaxill-lies-damned-lies-and-cdc-autism-statistics.html
The profession and government will follow, but that doesn't mean they are doing right.
http://www.ageofautism.com/2009/10/1-in-100-how-the-uk-government-arrived-at-the-adult-autism-figures.html
My family has been anti-vaccine since at least 1920 and I've never heard of this handbook. I've been intensively researching vaccines since 1999 and I've never heard of this handbook.
Anyone else come across the anti-vaccine handbook?
Or is Cable1977 making this up?
Unlike Wakefield, I will retract my original interpretation and say that many of the people here post anti-vaccine talking points. From that I then conclude that they are anti-vaccine.
I think people will be just glad to see the back of decade of official complacency - if, indeed, this is now happening. Otherwise you are just indulging in name-calling - people are entitled speak from experience.
Are there any lists of these talking points? I'd like to have something I can compare with people's actual postings to see if your evaluation is correct or the result of prejudice on your part.
Thanks.
Vaccinations are one of the most efficient methods of fighting disease. Now, not everybody must be vaccinated for the best effect. It should be enough to break the connection of successive infections. This would be a delicate decision and the justice is not clear.
Isjois has to be right that more "transparency" and more information is a good thing. However, when you offer choices, there tends to be a division more around 50%. People may not understand or they may understand but don't realize the choice is not that good. 50% is not clearly enough.
Well, perhaps the experts are looking in all the wrong places? I doubt they'll ever get their act together, damn their dry little souls. But then, as parents, we need to dismiss the 'debate', do our own research, and, if any parent should decide not to vaccinate their kids, I for one will support their decision.
But now I'm confused and wondering if Insel is currently auditioning for a position with vaccine makers like his brother (vaccine makers are often one and the same with psychopharmaceutical makers).
Here's my first thought on reading this post: pharma has regrouped, realizing that, while each new case represents a potential fortune in profits for psych drug makers over the lifetime of the "patient", the fear factor of the epidemic is a natural to sell prevention, i.e., a vaccine. Maybe a vaccine for XMRV or another retrovirus? A group of viruses? The only problem, of course, is that few parents will turn out to be carriers and the vector, in the end, is probably...vaccines. Will definitely be staying tuned.
http://www.theness.com/neurologicablog/?p=1374
Well, this is not the view of Thomas Insel, though I am undelighted about how he has run the IACC, and it is not the view of NIH head, Francis Collins, archiltect and former director of the Human Genome project, who told a senate committee in May 2006:
"But genes alone do not tell the whole story. Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur. They must be due to changes in the environment, including diet and physical activity, which may produce disease in genetically predisposed persons. "
http://www.genome.gov/18016846
So, Collins was saying then the rise was real and couldn't be genetic.
The author of the article I linked to certainly did not claim that environmental factors have no contribution. He makes the argument that more research and information is required to ascertain the contributions of environmental factors compared to increases in the definition of the spectrum as well as increased surveillance. The current data set is not sufficient to make such a conclusion about the level of contribution between those 3 or other potential factors of involvement in such an increase. A particularly important piece of information that is missing is the prevalence of autism in adults.
I humbly want to point out the word "some" used three times in the quote above. I do this because my husband and I feel the constant pressure from extended family, acquaintances and school district personnel to find a "cure" for our son. Despite years of various therapies, many still ongoing, we are subtly given the message by many that our son's autism remains our fault.
As my son grows into adolescence he appears to me to grow into his autism, certainly he's not "growing out of it."
While I truly advocate for research into the causes of autism (especially in the cluster areas, I live in one) and research into cures for those who can be cured, I also want to maintain focus on the thousands of autistic children who will grow into autistic adults. These children deserve early intervention, specialized education, various therapies and fully-funded social and living support as they age.
There should be No stigma attached to not being "cured" from autism.
Yes, you are quite right.
It simply is not good enough to say there all these studies which prove something when you don't even say which they are - and what a waste of space. The present bureaucratic stand-off over thimerosal, MMR autism arises from the IOM Review of 2001-4, which was a stitch up from start to finish.
http://www.nomercury.org/iom.htm
There is much wrong with the studies that constituted the IOM Review and much wrong with many of the others which have contributed to the myth that vaccines are in the clear. In the aftermath Congressman Dr Dave Weldon warned that the findings were unsafe:
http://www.nomercury.org/science/documents/AutismOne_Weldon_Remarks.pdf
as has more recently former NIH director Bernardine Healy:
http://www.cbsnews.com/stories/2008/05/12/cbsnews_investigates/main4086809.shtml
You may well be pronouncing in good faith but what you are delivering is the threadbare official propaganda, which should not satisfy anyone of independent mind. What else do we believe the government about?
I still disagree with what a few people have said in response but I will admit that I obviously need to research more.
If you wondering though about if the research has been done:
10 studies showed MMR doesn't cause autism
6 studies showed thimerosal doesn't cause autism
3 studies showed thimerosal doesn't cause subtle neurological problems.
Right now parent of autistic children are being mislead and victimized with useless, untested disproven, expensive, time-consuming, and even dangerous treatments.
For instance people are still doing IV chelation to remove mercury and at least one child that we know of has died from it. People are still injecting their boys with Lupron which is basically a chemical castration, normally used only on sex offenders, all because there is misinformation about testosterone levels and their effect on autism. And these are just two of the many things being proposed to parents without a shred of evidence or research to back up their claims.
The real tragedy is all of this hoopla is currently diverting research from effective treatments and into the real causes of autism. We need MORE GENETIC RESEARCH and how some of these environmental triggers probably contribute to them.
Go ahead and defend the vaccine studies you quote but do realize they are fatally flawed and your endorsement of them either shows your ignorance on that topic or your purposeful and deliberate attempt to steer innocent parents in the wrong direction which would be a harmful deed.
http://www.fourteenstudies.org/
- For a discussion of those studies go to http://www.14studies.org/ranked.html and http://www.putchildrenfirst.org/intro.html
- For a discussion of autism treatments read the book Changing the Course of Autism by Dr. Bryan Jepson, and go to the web sites http://www.talkaboutcuringautism.org/index.htm and http://www.autism.com/treatable/index.htm
- A child died of chelation due to a medical error. The doctor gave a rapid IV push of a type of EDTA that removes calcium.
- The majority of funding goes to research on genetics. Very little is spent on researching the biomedical treatments which have helped so many and the biomedical causes such as vaccines which thousands of parents have witnessed. As Dr. Hertz-Picciotto if UC Davis said, “Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones. We need to even out the funding,” .
http://www.ucdmc.ucdavis.edu/welcome/features/20090218_autism_environment/index.html
You are simply repeating talking points, which might sound reasonable to me if I didn't know anything about the subjects, but which are actually quite inconsistant with reality.
That said you present me with numerous sources that I intend to try to take a look at here in the near future and see if my conclusions are incorrect.
That is the great thing about science you can be wrong and you often are.
I disagree with you on several points but will be taking a look at these resources you have provided. Thank you.
I'm a genuinely concerned parent as everyone else and want just as much to get to the bottom of this. However I am also fearful of the backlash against vaccinations in practice and the deaths that I personally believe will ensue if the vaccination rates continue to drop.
If it is vaccination based then since the rate of people giving their kids vaccinations is dropping then hopefully over the next few years we will begin to see a corresponding drop in autism rates.
The whole idea that mercury was causing autism was created by two mothers who published their own "research" saying the symptoms of autism where identical to autism. I don't agree but you can look up the symptoms of mercury poisoning and autism and decide for yourself. But to me their presentations are completely different with only a few symptoms that can interpreted as similar
As for the MMR being the source, I guess I retain judgement. But the original idea came from British Dr. Andrew Wakefield and if you are interested please look up his story. His research was not only discredited THROUGHLY, but his ethics were also throughly called into question when it was found that he was receiving money from potential anti-MMR litigation lawyers. He was forced to move from Britain and now "practices" here in the US.
The current CDC numbers are from 8 yo children in 2006. That makes their birth year 1998--thimerosal is very much in the picture and since most flu shots as well as the H1N1 shots contain large amounts, thimerosal is not gone, unused, and is still manufactured.
- Mercury in the environment has been increasing.
- Ethylmercury has never been found to be safe. It is just as toxic as methylmercury. Burbacher's study found that ethylmercury leaves the blood sooner than methylmercury but that more is absorbed into organs such as the brain.
- Read the thimerosal label.
- Mercury is not the only problematic substance in vaccines. The number of vaccines have continued to grow. Infants are now exposed to more aluminum than before. The whole point of vaccines is to stimulate the immune system, and studies have shown immune system dysregulation in autism, including autoantibodies to the myelin basic protein coating nerve cells and inflammation in the brain.
Wish I had time to write more, but gotta go....