David Kirby: Dr. Insel on Rising ASD Numbers: “No Question” About Environmental Factors

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By David Kirby

On Friday, the CDC released its long-anticipated (HERE) autism figures, showing that the average rate of autism spectrum disorders (ASD) among 8-year-olds increased by nearly 60% 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 8-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 8-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 (1 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%, 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 other 10 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 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% 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% 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% to more than 90% 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, click HERE.

David Kirby is author of Evidence of Harm, a founding contributor to Huffington Post and a contributor to Age of Autism.  His next book, Animal Factory: The Looming Threat of Industrial Pig, Dairy, and Poultry Farms to Humans and the Environment will be released within the year and is available now for pre-order at Amazon.
 

Comments

[Natasa]

Jake@""I also asked Dr. Insel about the recent discovery that a retrovirus, XMRV, had been found in 98% of all patients with chronic fatigue syndrome. Some researchers say the virus may be implicated in autism, as well."
I used to live near a very severely autistic kid who regressed into autism after his MMR vaccine whose father had chronic fatigue syndrome. Perhaps the kid also had the virus, which was then activated by the MMR vaccine and gave him regressive autism."

Yes, that is the working hypothesis and one of the scientists behind the original XMRV research actually stated as much in a TV interview (check the link to posted by B). The other possibility is that immune deficiency induced by XMRV would open doors for live virus vaccine to bypass the immune system, revert to virulence and establish permanent presence in the host, including the gut as well as passing over to the CNS/brain. This event would not of course exclude the first possibility of XMRV itself reactivating and spreading from immune cells to CNS.

[jerry dunbar]

Vaccine-gate 18 pound toddlers are getting 4 shots at a time, quick focusing on one shot.. FDA doesn't test for effects for multiple vaccines on toddlers!

Demographics are showing what race keeps their kids up with vaccine scheduals the most. I dare you to look at military kids!

[KHW (not KWH)]

Darian - Sorry - I've been off line over the holidays.

Found another for you - that may help illuminate how key the environment can be. You'll find all sorts of interesting tidbits including a family with a very LFA & HFA twins - and how their environment was different (that the family takes as sign of genetics. I take as sign of environment... as even the HFA was hurt by HIS environment.)

"Genes implicated in twins' autism
Researchers suspect multiple genetic roles, environmental triggers"
By Kelly Brewington | Baltimore Sun | January 4, 2010

http://www.baltimoresun.com/health/bal-md.hs.autism04jan04,0,7145703.story

I find it amusing that the article is written from the perspective that the twin rates are indicative of genes being the engine - and environmental triggers being the caboose. You could have easily written the very same article with the perspective that the environment is the engine and the genes are the caboose.

From the article:

"Recent studies support that theory. Researchers at Kennedy Krieger Institute studied 277 pairs of twins and found that when one identical twin had the disorder, the other developed it 88 percent of the time; for fraternal twins, that figure was 31 percent."

"Autism may be inherited to some degree, but even twin studies show that not all sets of identical twins have autism. And when they do, they don't always have the same severity of the disorder."

"That connection between genes and the environment, called epigenetics, might explain these distinctions, said Dr. Walter Kaufmann, director of the Center for Genetic Disorders of Cognition and Behavior at Kennedy Krieger. Kaufmann is studying identical twins to better understand how certain genes may be "turned on and off" by environmental factors."

" "No matter how similar the environment of twins, no two humans are exposed to the exact same conditions," he said. "There are differences and they appear to accumulate over time." "

[Darian (nickname)]

To add to that, and to clarify the last question on here, please allow me to go back and finish, lol.

I have this question because as before stated, I had a much later start on my vaccines than my fellow students. The first one I had was when I was 6. And my mom spread out my vaccine schedule due to bad reactions my brother had as a child (he's ok now. :))

Makes me wonder if the later vaccine schedule might of had something to do with me not being on the other side of the spectrum.

Another theory I have is perhaps us on the other end of the spectrum, though we have weak immunes, perhaps our immune systems did better fighting off the metals in the meds, vaccines and enviorment than others on the other end of the spectrum.

Last but not least, Asperger's is a completely different disorder. Although it is very much like autism in many ways, there are issues that seem vastly different and unique to AS to me.

I thought a little more about that and came up with this thought. You know, Attention Defacit Disorder and Attention Deficit Hyperactive Disorder also are highly simiular. Perhaps even more so than Asperger's and regular autism. But there is no such thing as a Attention Deficit Spectrum Disorders, and ADD and ADHD are considered seperate diagnoses'

[Darian (nickname)]

KHW, thank you for your reply. But I am still confused as to why the same condition would vary so differently. I understand, working in Mental Health, that most disabilities have thier own spectrum so to speak.

But to use an example, lets look at CP. I know two people with it. One needs a walker, it's dificult for her to walk, and without her walker or a wheelchair she is incapacitated. Another friend has CP also has a hard time walking but can still walk, and his hands have more control, but you can still see it's something similar to my other friend.

These two being on the seperate ends of the same disorder.

Now looks take a look at autism. You take someone like me who is VERY (no not tooting my own horn here)high fuctioning. I have Asperger's, but due to have developed a wide wrange of ways to mimic NTs that are around me can with quite a bit of effort, appear completely normal.

In fact, most people unless they know me day to day or are family don't know that there is anything wrong with me at all. I'm very good at faking normal, although as I have stated in other posts, I have issues of my own.

Now look at someone at the other end of the spectrum, with LFA. To not stereo-type, I'm just going to go off some common threads, I hope not to offend anyone. Non-verbal, severe deficits in communitcation, stimming, self-injurous behavior, seems comepletely out of this world and entirely in thier own, desire to communicate anything other than needs seems to be very slim. I'm not even covering half of it!

You wouldn't believe the things I have seen sense working here! But I don't wish to offend, so I only put a little, what I could try to get on as nuetral.

But even from that, can you see what I mean? The difference between Low Fuctioning Autism, and Asperger's Syndrome is vast! If autism all along the line is caused by the same thing, what causes it to affect some so severly, and those like me not nearly as severly?

[KHW (not KWH)]

Hi Darian -

I think you may be interested in this one...

http://www.psychologytoday.com/blog/aspergers-diary/200809/asperger-emotions-and-adult-relationships

Re: why is there such a spectrum (along the autism spectrum disorders)? It's the same with NTs by the way (a spectrum). Note the ADOS scale as applied to my two children: I have one kid on spectrum with an ADOS score of 8 (he's very high functioning). And a "NT" child with a score of 6 (so an NT w/some serious issues :)).
http://en.wikipedia.org/wiki/Autism_Diagnostic_Observation_Schedule

Answer to your question:

It's genetic susceptibility to environmental triggers (in from 95% to 80% of ASD folks). When where the triggers? What where the triggers? How many triggers? Is the trigger on-going? The other 5% to 20% of ASD cases (estimated) are clear chromosomal abnormalities - but within these cases - I suspect it is the same (a whole range).

NOTE: it is the same with Down's Syndrome as well. There is a whole spectrum of functionality in Down's.

[B]

There is an interview about XMRV and autism here - the part about autism starts at 5min 13 seconds

http://www.youtube.com/watch?v=mzIdpMUunHE#t=5m13s

[Darian (nickname)]

First time commenter on here. :)

I've always had a question.

Let me begin with a story. My mom has been a part of the medical profession for as long as I've been alive! When my brother was born (my older brother) he got all his shots and had a very violent reaction. We are talking diherea, full body spasms, soaring fevers, sickness that almost killed him. Sense then however, he rarely ever gets sick and for the most part seems pretty normal, though he does have a bad temper.

After seeing such a reaction, mom spread my vaccination schedule out. I didn't get vaccinated for the first time till I was 6. Other than being terrified of it and having to have several people hold me down and screaming bloody murder, afterwards I don't recall feeling sick. I did feel lightheaded.

Much later, after a false diagnoses of ADD as a part of the trend diagnoses stupidity of the early 90's, I was diagnosed with Asperger's Syndrome.

Since then I wondered. Why is it that autism affects some so severly, and others not as severe? I'm not saying I don't have a disability of course.

I personally hate the fact that if one thing goes wrong with my routine that I rely so rigidly on, my entire day goes wrong, and I am unable to fuction like I am supposed to. I become lost and dazed and upset.

The sensory sensitivity and hte inability to read body language sucks too.

I hate the general feeling that all those with AS lack empathy of the ability to feel. That is not true. It does not show up in body language, facial expression, or for some of us language, but we still feel emotion.

For me, I litterally have to act out what I feel. Or let me put it this way. I find it a pain that for me to be able to get across how I am feeling on the inside, I have to act out that emotion on the outside, and mentally think about how to properly display it because it does not naturally appear like with a NT.

So yes, it's a dissability. And if there was a cure that would allow me to keep the objective thinking, the attention to detail, my knowledge and desire to learn all aspects of my subjects of interest and allowed me to get rid of the bad things such as rigid reliance on routine, the sensory, the havin gto act out emotion, I would be first in line!

Back on topic. Why is it I wonder that autism affects some of us mildly and others so severly that functioning can be nearly impossible!?

[Concerned Parent]

http://www.thenhf.com/vaccinations/vaccinations_197.htm

1 in 88 Children With Autism/ASD In Military Families

By F. Edward Yazbak, MD, FAAP & Raymond W. Gallup
July 9, 2008

[Jake Crosby]

"I also asked Dr. Insel about the recent discovery that a retrovirus, XMRV, had been found in 98% of all patients with chronic fatigue syndrome. Some researchers say the virus may be implicated in autism, as well."

I used to live near a very severely autistic kid who regressed into autism after his MMR vaccine whose father had chronic fatigue syndrome. Perhaps the kid also had the virus, which was then activated by the MMR vaccine and gave him regressive autism.