By Anne Dachel
On Apr 11, 2012, NPR aired the panel: Insights from New Research into Autism
The promo said, “The diagnosis of autism in the U.S. has almost doubled in the past decade. Join guest host Susan Page to discuss new research on factors that might contribute to this complex condition.” .
“The 52-minute program covers possible causes of autism, how to identify and classify autism and how to treat it.”
The panel included:
Susan Page of USA Today
Thomas Insel director of NIMH and head of the Interagency Autism Coordinating Committee
Jennifer Walsh mother of a four-year-old with autism
Amy Harmon from the New York Times (See my recent story on Harmon and autism: Drafted into The Autism Wars)
Lauren Kenworthy, Children Center for Autism Spectrum Disorders
The first topic was the stunning new rate of one in 88.
Harmon: “The higher rates don't necessarily mean that the actual incidence of autism is increasing. It may, and many experts believe that some portion of that increase is the result of environmental factors that have not been pinned down. The director of the CDC in a phone call with reporters last month made a point to say that the increase could be entirely due to better detection. One reason he went out of his way to make that point is because in the past, the increase in these rates have led to a lot of speculation about the role of environmental factors that had not necessarily any basis in scientific evidence. Like the idea that autism is caused by childhood vaccines, which has been thoroughly debunked. Even though it has, it's led to a serious public health problem in places where parents are refusing to get their kids vaccinated and there have been outbreaks of measles and whooping cough. ...There may be environmental factors involved. We don't know what they are, but some large part of the increase is due to the fact that doctors and teachers and parents are getting better at recognizing the hallmark traits of autism and identifying them.”
Harmon on the rate: “It is a high number and I would say that one other factor in the higher number has to do with the fact that in the mid 1990s, there was a broadening of the diagnostic criteria for autism... Autism is really a wide spectrum...so of course, the number has gotten bigger as a result of that.”
Insel on the rate: “So this takes us to a pretty high rate, if you think about this being nearly one percent, or in the case of boys, one in 58, something like that. (He was corrected...one in 54) So these are high numbers relative to juvenile diabetes, it's about three times more common. Asthma I think is in that general range. Important to remember that while we're very sensitive to this increase, this isn't entirely unique. We've seen about a three fold increase in food allergies in the last decade and marked increased in asthma and juvenile diabetes. You've probably seen those numbers where pediatric bi-polar disorder went up forty fold in a decade, so as Amy suggests, sometimes there are diagnostic trends that can really drive numbers in a very big way. But that's not to say that we can just rule this out or dismiss this as being just increased detection or increased ascertainment. Very real possibility here that there are more children affected. Until we have evidence to the contrary, it's best to assume that.”
Kenworthy on the increase: The increase in awareness is striking. There've really been major improvements in the way we go out look for children with autism. Pediatricians have been told by their professional society that they need to screen for autism in babies, and that's really important. ...Fifteen years ago, everybody who made it to us was sort of a more classic, clear case of autism. Now, about half the kids that come through our clinic, we don't diagnose with autism. ...Children are getting assessed and they're getting the services they need as early as we possibly can manage to identify them and provide those services.
Walsh on her son: “He had met all the milestones and [the doctor] wasn't overly concerned,... He had met and exceeded his goals, he was talking up a storm, and they really didn't think that the therapy was necessary anymore. ...He kind of kept to himself and was distracted during circle time and things like that. ...He's very functioning...”
And how's he doing at four?
Walsh: “He's absolutely just the most amazing, incredible child you could ever could imagine having. We've had a lot of therapy... He's in a mainstream preschool where he gets a little extra support when he needs it. But he's absolutely thriving. ...”.
Insel on narrowing the definition of autism: “The first point to make is that this is not one single, simple disorder. Sometimes I think we should be talking about the 'autisms.' ..”.
Kenworthy on the DSM 5: “When we talk about narrowing the definition, we are excluding a group of children that really benefit from being understood as having these core social and also repetitive behavior deficits. And they need treatment for that. ...”
Walsh on the DSM 5: “That's of great concern to me.... I'm definitely concerned about services that are going to be available to him....”
Harmon brought up adults with autism.
Insel: “That has been some press report that actually suggest [some children will lose services], ...but that's probably not the case. The numbers aren't going to change that much....”
Why is it more common in boys?
Insel: “We don't know. We really don't know. (Insel said it’s been like that for the last 50 years, but we don't know why.)”
Kenworthy: “We know autism is a genetic disorder. It's one of the most highly heritable disorder of these early developmental disorders. ..”.
On the environment:
Insel: “We don't yet have a major environmental factor that's driving any sort of an increase in numbers. People who have looked, have looked for many of the potential smoking guns, don't find them. Where most of the research is going now is looking for prenatal exposures and trying to figure out what may be happening very early on, probably in the second trimester...”
Mom said her son was no autistic when he was born. She brought up dental amalgams. chemicals in the home, and the toxic amount of aluminum in vaccines. "The FDA says 20 mcg is a toxic dose and if the child gets all the vaccines at two months, they'll receive 1875 mcg of aluminum."
Harmon: “[Studies] have indicated that there is no such link. These most recent numbers, if there was any lingering doubt, should speak to that fact, because ...the theory was that thimeral, an additive in vaccines, was responsible and thimerosal has been removed from virtually all vaccines ... you would have expected those numbers to go down. ...In fact, they've gone up.”
Kenworthy: Talked about how painful it is see a child "appear to descend into autism." But it's all just a coincidence because we just don't see the signs of autism until right around when they're vaccinated.
Insel on regressive autism: “Something that would affect the development of language in not going to be apparent in the first six months, maybe not in the first year.”
Insel talked about recognizing the bio-markers as early as possible.
Walsh said her son had problems as an infant. “This is the way he was born and it's not anything that's happened since.”
(DURING ONE OF THE BREAKS, WE WERE INFORMED THAT ONE OF THE SPONSORS OF THIS SHOW IS THE BILL AND MELINDA GATES FOUNDATION.)
The next phone caller speculated on the possibility that autistic people in the past just stayed at home. Single family homes and everyone working means that parents today have to have services for autistic kids that extended families provided in the past.
Then Insel cited the British questionnaire survey that supposedly found a one percent autism rate among adults. “It does suggest that some of what you’re suggesting is possible, that actually there’s been a lot of autism around for a long time. It’s just been called something else or hasn’t been called anything at all.”
What happens to all these people when they become adults?
Kenworthy: “The data to date has been very discouraging….Less than a quarter… of young adults with autism—and average or better intelligence—so bright people, were able to function independently. The vast majority of kids were dependent on their parents.”
Harmon: “Once you leave high school, there’s no guarantee of services.”.
Walsh: “I think so much of it is about increasing awareness and acceptance among society so that people who are hiring become more aware that …a young adult who may not give the greatest interview,… may be light years ahead anyone else you could possibly interview. … Everyone is different and has something different and unique to offer.”
Insel: ”If you start to do the math, it looks like out of the 70,000, 000 children in this country, if one in 88 is effected, ten years from now we’re going to be looking at a very powerful social challenge, which is, how do we provide, not only employment and housing but other kinds of support… We need to be thinking much more carefully and much more aggressively about what the services are going to look like in 2022.”
“But remember this is a spectrum and you’re going to have some children, who at age eighteen are still not toilet trained, and still don’t have language, and are still functioning at a very very primitive level. What happens to that population?”
In response to one phone call on how autism is generational, Insel said, “Many of the kids who get this label are severely, severely disabled. These are children who will spend much of their lives in institutions because they cannot be managed in a family. Many of them have self-injurious behavior. They will bite themselves, they will bang their heads until they bleed. We’re talking about a disorder which in its more severe forms, is really profoundly disabling. That’s the piece of it that’s also increasing, so there’s every reason to take this very seriously.”
What we learned
It’s amazing that people can continue this type of performance in the face of all the sick and disabled children who are changing the childhood landscape everywhere.
Among the participants was Amy Harmon of the NY Times. I recently wrote about her coverage of the autism epidemic in this piece.
Autism mom Jennifer Walsh was included telling us that she believed that her son was born with autism.
There was an incredible amount of repetition, denial, and professed ignorance in this talk. I had to ask myself why they even bothered to air the discussionl since they had nothing to say that could possibly matter to people looking for answers.
My main interest was listening to Dr. Insel. He’s the top national expert. He’s the head of the Interagency Autism Coordinating Committee created by Congress to deal with the epidemic. He’s supposed to have the answers. Sadly, he never does.
In the comments he made, he had something for everyone and none of it made any sense. Insel was right there telling us that autism is increasing among our kids but so are lots of other health problems. He’s still scratching his head over what the latest rate means. He acknowledged that there’s a real possibility that more kids do have autism. He dismissed regressive autism, and he went into great detail about how prenatal exposure to toxins was to blame for autism.
Just how long are people are going to tolerate Insel’s failure to ever know anything for sure about autism? Amy Harmon took the lead denying a link between vaccines and autism, while Insel carefully avoided taking part in that part of the discussion. (And I’d like to point out to Harmon that the lady on the phone was talking about ALUMINUM in vaccines. Harmon’s response focused only on thimerosal, and the word mercury was never used.)
Insel repeated the “same old, same old” about autism. Most of it was about all the things he still can’t figure out, that included knowing if the increase is real, knowing why boys are more often affected than girls, knowing what the possible environmental triggers might be, or what the genetic factors are, (Anyone else talking about being completely unable to do their job would be expected to apologize, but that thought never seemed to have occurred to Insel.)
It was evident to anyone listening that Insel talked like he believed autism has always been around, just called something else, at the same time, he was firm about what the future holds. We should all be worried. There are a lot disabled adults coming and we have nothing for them. While he didn’t use the words EPIDEMIC, CRISIS, or EMERGENCY, he made a point about the need for jobs and services. He also didn’t pretend that all the children with autism are high functioning like the other speakers did. He knows there are lots of them who are severely disabled.
If the host were any kind of a real journalist, she’d have asked Insel why the IACC calls autism a “public health care emergency,” but he never uses the word emergency when talking about autism.
The truth is, Insel knows what’s happening. He knows how bad things are, despite his comments about finding autistic adults in Britain. In the end, he’s done nothing and he’s proud of it. And what he said on NPR was not what he said at NIH and MIT in 2009 and 2010.
On May, 2010 at NIH, Thomas Insel made these comments:
"Eighty percent of the people with a diagnosis of autism [in the U.S.] are under the age of eighteen."
“If you look at those numbers, the increase and recognize how many of those kids will become adults, we ...also need to be thinking about how we prepare the nation for a million people who may need significant amounts of services as they are no longer cared for by their parents or as their parents are no longer around."
In Dec 2009, he spoke at MIT. There he said, “In the 1980s,...I remember having to look far and wide to actually find a child with autism."
"I'd never seen any children with autism through all of my training."
"I didn't actually know anyone that I trained with who'd actually seen a child with autism."
He also said he'd seen the data from PEDIATRICS magazine putting the current rate at one in 90, but he admitted, "I'm not sure what to do with these data."
"I don't know of any data quite like this over a 20 year period which shows this striking increase."
Insel said we don't know what's driving this. We know it's not because of people who were labeled something else. He said it's not diagnostic substitution. .
"I said before this isn't just genetics... There have to be environmental factors."
"We have barely been able to scratch the surface."
"There are something like 80,000 potential toxicants."
So which speaker is the real Thomas Insel? Is it the person on NPR who has a dozen different positions on autism and an answer for everyone? Is it the expert at MIT and NIH telling us that things are a real national disaster in the making? And why does this man have the position of authority that he does when he seems too paralyzed to do anything?
Anne Dachel is Media Editor for Age of Autism. Subscribe to her news site at AnneDachel.com.