I recently listened to a recording of the April 2, 2012 Tom Ashbrook Show on NPR in Boston. It featured Dr. Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, and Dr. Max Wiznitzer, pediatric neurologist at Rainbow Babies and Children’s Hospital in Cleveland. The topic was the latest jaw-dropping autism rate increase, now one in every 88 U.S. children and one in every 54 boys.
This interview was 45 minutes long and during that time we heard endless commentary about autism, most of it focused on the need for early detection and intervention at the same time neither expert could give us a reasonable explanation for why we’re losing a generation of children to a disorder that no one ever heard about 25 years ago.
Max Wiznitzer on one in every 88 kids now having autism:
"I'm not surprised. Number one, I think our diagnostic criteria are being applied more liberally. . . . [And] we're getting much better at identifying them. Twenty, thirty years ago, no one knew what autism was. Nowadays, everybody knows, up to the point that parents to some degree walk in with any child with a developmental problem and their first concern is, is it autism?
"It doesn't really matter what we call it, if we identify that they have a problem, we know that they need some help.
"In my opinion, I think that to some degree, we have over-labeling. But again, we may not have the right label, but if you the right intervention, that's all that's important."
HOST: "What about more incidence of this? Do you think there's simply more autism in the population?"
WIZNITZER: "I don't think we have numbers that definitely would tell us this. Look at the reason we could have more numbers:
1. More liberalized diagnostic criteria
2. Greater awareness. The public knows more about it. The people who make the diagnosis know about it. There's also an increase in populations that have risk factors. For instance, people are having children at an older age. We know that parents of older children have a higher risk for this. ...If you have one child with autism, the risk for a second child with autism is 20 percent."
Wiznitzer went on to cite other countries with even worse autism rates than the U.S.
The host again asked Wiznitzer if there could be an actual increase in the number of children with autism. Wiznitzer conceded that there may actually be more autism at the same time he went over all the reasons children could have social impairments. They may end up classified within the autism spectrum when they're really not autistic. We may still be mislabeling children as autistic when they really belong in some other category.
Wiznitzer pointed to ongoing studies looking at environmental factors. "…things that affect the brain while the baby is still developing in the womb--not after the birth, but in the womb. Could it be that there's some exposure to some substances? All this is being researched. But for the most part, it's still conjecture. There's no proven causal association."
All that matters is that kids get identified so they can get help according to Wiznitzer. He lamented the fact that half of the pediatricians out there aren't screening for autism.
Next Dr. Geraldine Dawson was interviewed. The host asked Dawson why her group, Autism Speaks, calls autism a "national public health emergency--autism epidemic" while doctors like Wiznitzer and the CDC call it "better screening and awareness."
DAWSON: "It's important to keep in mind that the CDC has used exactly the same methods every year. So every year they've been looking at records and keeping those methods exactly the same so we can systematically monitor the increase. We can't really attribute the changes that we've seen in prevalence to something about the methods and the way that the CDC has been looking at educational records."
She said that about 50 percent of the increase was due to "broader diagnose, increased awareness, and diagnostic substitution." But the other 50 percent of the increase is unexplained. Dawson said that it's "prudent" to look at environmental risk factors.
DAWSON: "We do have a public health crisis at this point and we do need a national plan to try to address not only the need for research but also better early detection, early intervention, and develop more effective treatments. We have to presume at this point that environmental risk factors are playing a role. We already have some evidence of some of those risk factors. ...Ones that have been shown so far are ones that affect the very early brain development of a baby, typically in the prenatal period. Some examples are advanced age at the time of conception. ...Both fathers and mothers. Nutrition during pregnancy... Babies who are born [with] very low birth weight and or have birth complications that involve anoxia... Exposure by the mother during pregnancy to high levels of pesticides or even air pollution can increase risk for autism. ...We believe that both genes and environment play a role."
WIZNITZER: "...We have to look at other numbers for other developmental disorders. Something as simple as ADHD. In the same time period that the diagnosis of Autism Spectrum Disorder went up 87 percent, ADHD went up 66 percent. ...Is it something that is affecting them or is it that we're just getting better at identifying them?"
WIZNITZER: "I don't like to use of the word 'epidemic.' ...We need to have heightened awareness that developmental disorders are out in the population and need to be identified and treated."
On prevalence and clustering:
DAWSON: "If anything, I think the current prevalence from the CDC study likely are an underestimate of the number of children affected by autism in the U.S. And the reason why we believe that is because of the method that was used to conduct the study. ...We recently funded a study in South Korea where they used a different approach and screened an entire population. ...Using that approach, we found an estimate of one in 38. So currently, we're working with the CDC and funding a similar study that will be collected at one of the CDC sites that is going to use this total population screening approach. So we think we've only scratched the surface here. So it’s very unlikely that we're overestimating."
WIZNITZER: "On the South Korea study, there have been some individuals who've raised questions about the statistics that were used in order to calculate that number because what they did was to have a small group of individuals and they generalized information and made inherent assumptions there. There are individuals in the autism community who question the assumptions that are made and feel that the numbers that were recorded were overly-generous and were overly-broad. ..."
HOST: "When you start talking about one in 54 for boys or one in 38...these are really frightening numbers. ...How should people take this onboard?"
WIZNITZER: "I think we look at it the other way around. Even if it's one in 54, it's about 2 percent. That means you've got a 98 percent chance it's not going to be there. If you look at other conditions, there's a much higher chance of some of these conditions are there. ...ADHD, 8 percent risk that it's going to be there. Intellectual disability, mental retardation, a 3 percent chance that that's going to be there. Learning disability, 6 to 8 percent, and that's a conservative number. ...There are a lot of risks that are out there.
Wiznitzer then went on to talk about kids getting the wrong label. "If I’m seeing this over-diagnosis in my area, is this also happening, 'cause what we're doing, first of all, the CDC numbers is a range. It was a prevalence range. The numbers were low in some areas and higher in other areas. The number you quoted was the average. I agree that this is an area that needs to be addressed. This is an issue that we need to be aware of with services provided."
HOST: "But you're saying over-diagnosis. Geraldine Dawson was saying under-diagnosis. Why would there be over-diagnosis? What factors would lead to that?"
WIZNITZER: "I think autism is on everyone's mind. Some people who make the diagnosis, especially if they don't have a lot of experience, ...take an impairment in socialization and automatically assume that it's autism."
"Autism as special education diagnosis has a higher rate of compensation for special ed services than other diagnoses... Parents are told erroneously by school systems that if you have a diagnosis of autism or Autism Spectrum Disorder, then we can give you the following services..."
Call from a listener:
Stephanie called in and listed all the developmental diagnoses her 13 year old son had---which didn't include autism. She described the failure of her pediatrician and the school to address her son's needs. They had to sell their home to afford a school that could help him.
Dawson then recounted the benefits of early diagnosing and intervention.
A mother, Glen Finland, with an autistic son (24) who wrote a memoir on his life growing up, was featured next.
FINLAND: "I think the diagnosis creep makes sense for all the reasons your thoughtful experts have outlined: the early screening, the detection, the intervention, the greater awareness, along with the broader definition. But for me, the question is, because these kids are growing up...when is the government going to confront this as the public health crisis that it is? We need to see what we can do for these kids and stop seeing them as targets for therapy and really focus on supported employment and competitive wages and jobs that will help them become independent adults. We need to welcome them into our workforce.”
The host then speculated that if the numbers have always been so high … “This really does get back to this issue of whether we have more Americans now with autism or just more diagnosis. If it’s not really more, then somehow, one way or another, for better or for worse, it’s been working. Is that a fair thing to say Glen?”
Finland didn’t address this critical question. Instead, she talked about her son seeking independence. “It’s really a civil rights issue. Work is a right and these young people are entitled to work…”
DAWSON: “This is a lifelong condition. What we want is for every person to not only reach their potential but to become a productive member of society, to have a job, to be able to contribute, to have a life that is satisfying. We can do that with the right kinds of support.
Dawson went on to talk about the transition from high school to adulthood. “..Some parents talk about as falling off a cliff because there are very few services, especially for higher functioning individuals…”
Call from Roy in Kentucky. He’s a father of a 7 year old with autism and he described the lack of support he’s found.
Wiznitzer urged Roy to get services and the host wished him the best of luck.
DAWSON (to Roy) “I feel your pain, buddy, but I have to say, it gets better, it really does. It takes a lot of maturity to parent a special needs child. It can be hard on a marriage, but boy do you need that partner because you can’t do it alone. Let me give you a tiny…, advice … I’ll tell you one thing that is important. Broaden your own circle of support, salt away time for yourself and your partner. You have to refresh the well. You have to get some sleep if you can. …It is very isolating to have a child with autism, so look outside and see who is there to offer help.”
Dawson went on to promote Autism Speaks online Facebook community.
The host then asked a question that was sent in. “Dr. Dawson, has the link between the MMR vaccine and autism been completely discredited?”
HOST: “I noticed the word ‘vaccine’ hasn’t even come up in this hour. Is that …off the table now, Dr. Dawson?”
DAWSON: “There is no evidence that the increase in prevalence that we’re seeing in Autism Spectrum Disorder is linked to the MMR vaccine. If vaccines play a role, and there has not been any evidence thus far to show that it has, it would be with a very small minority of individuals who have an underlying medical condition where the vaccine may have triggered an onset of symptoms for an already existing condition or vulnerability. So we do not believe that vaccines are an explanation for the increase and we strongly encourage parents to get their children vaccinated.”
The host then brought up the DSM changes.
HOST: “Is it possible that we’re just going to define this problem away?”
Wiznitzer said we just have to wait and see what happen. He went to encourage more community involvement for autistic individuals.
From the exchange between these doctors, it’s clear that autism is just too complicated an issue for the experts to reach any conclusions about. While Dawson suspects there’s UNDER-DIAGNOSING and Wiznitzer believes there’s OVER-DIAGNOSING, they’re really on the same page. There’s a concerted effort to deny any link to the ever-expanding vaccination schedule our children are subjected to. Both doctors cited PRENATAL environmental exposures, which neatly leaves the pediatric community off the hook. Dawson openly admitted, “If vaccines play a role, it would be with a very small minority of individuals who have an underlying medical condition.”
She’s also not interested in looking into the issue. These experts are prepared to turn their backs on “the very small minority” of children whose autism is caused by their vaccinations. Their parents must accept that they’re the collateral damage in the war on disease.
I wish I had been filling in for Tom Ashbrook on April 2. I would have asked the questions he never brought up during the interview.
“Dr. Wiznitzer, how can you can you say that there’s not been a true increase when no one has ever shown us a comparable rate among adults, especially adults with classic autism, whose symptoms are obvious to all?”
“Doctor, how do you explain regressive autism? What happens to kids who are born healthy and are developing normally but who suddenly and dramatically lose learned skills and end up with an autism diagnosis?”
“Doctor, how do you explain all the concomitant health problems associated with autism? Why do so many of these children have things like seizures, severe allergies, bowel disease, and sleep disorders?”
“Doctor, do you have any idea when you might actually know anything specific about the rate? Shouldn’t the medical community at least be able to give us accurate numbers?
“Dr. Dawson, you said, ‘If vaccines play a role, and there has not been any evidence thus far to show that it has…’ Then how do explain the settlement that Hannah Poling received when HHS conceded that the vaccines she received resulted in her autism, as shown by CBS News?”
“Doctor, why has there been no recognition of the dozens of cases of vaccine injury that included autism and were compensated by the federal government as shown on FOX News?”
“Doctor, with all the research money that Autism Speaks provides, why has there never been a simple comparison study of the autism rate in fully-vaccinated and never-vaccinated children? It could end the heated controversy instantly if one in every 88 never-vaccinated children also has autism. With so many parents now too frightened to vaccinate, the study group is out there. Why has this never been done?”
How can a country that boasts having the best health care system in the world know so little and do so little about a health care problem affecting a million children? The only real message in the NPR interview is a call for early diagnosing--and doctors still aren’t doing that right. This is clearly a system that will continue to fail our children.
Ginger Taylor also wrote about the Boston NPR interview on her great blog, Adventures in Autism, on April 3, 2012.
Anne Dachel is Media Editor for Age of Autism. Subscribe to her newsfeed at AnneDachel.com.