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.