According to a new report from the CDC, the number of American eight-year-olds with autism was at 1:100 in 2006, up 60% from 2002. In other words, about 1% of American eight-year-olds had an autism spectrum diagnosis in 2006, and that number is sharply up.
It's important to note that the 1:00 number includes not only medical diagnoses, but also "educational" or "administrative" diagnoses (diagnoses made by schools or other non-medical personnel). The report also states that 40% of those who who received autism diagnoses later lost those diagnoses!
Confusingly, a similar finding was presented in October in an article in Pediatrics, and this announcement is actually a re-announcement of these and related findings. The abstract from the Pediatrics article states:
Results The weighted current ASD point-prevalence was 110 per 10,000. We estimate that 673,000 US children have ASD. Odds of having ASD were 4 times as large for boys than girls. Non-Hispanic (NH) black and multiracial children had lower odds of ASD than NH white children. Nearly 40% of those ever diagnosed with ASD did not currently have the condition; NH black children were more likely than NH white children to not have current ASD. Children in both ASD groups were less likely than children without ASD to receive care within a medical home.
Conclusions The observed point-prevalence is higher than previous US estimates. More inclusive survey questions, increased population awareness, and improved screening and identification by providers may partly explain this finding.
Can the factors described in the Pediatrics conclusion truly explain the explosion in autism spectrum diagnoses? Is the explosion real, or apparent? How can we possibly explain a 40% rate of apparent misdiagnosis or cure?
These questions are presently a controversial minefield. Today, in the Huffington Post, journalist David Kirby cites Dr. Thomas Insel, Director of the National Institute of Mental Health and Chair of the federal government's Interagency Autism Coordinating Committee (IACC). Not for the first time, Insel suggests that the rise in numbers may be real as opposed to apparent:
"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."
Despite Insel's comments, there is nothing like agreement on the question of whether autism is on the rise. In fact, there are legitimate arguments to be made in both directions, and both sides of the argument are supported by large-scale studies conducted by legitimate researchers both in the US and abroad.
My personal opinion is that we are nowhere near the place where we can truly compare apples to apples (earlier diagnoses to today's diagnoses) to calculate "true" changes in numbers of children diagnosed. In fact, I suspect we may be looking at several different disorders, and seeing increases in some but not all of them. Meanwhile, we may indeed be overdiagnosing very young children with very mild symptoms.
Last year, I created a poll asking readers whether they believe there is, indeed, an autism epidemic. That poll still seems of real interest, so I'm relinking here:
I am endowed with Asperger’s.
Back in September British researchers released a well designed and carefully implemented study which demonstrated the rate of autism in adults in England was about one in one hundred; the authors conceded that they might be underestimating, because the household type survey would miss institutionalized autism cases.
So why should we be the least bit surprised when a US study of eight year olds finds the same rate?
I have not seen any institutional evidence of an increase in autism. The number of institutional beds in the United States has actually decreased. No local governments near where I live have built any specialty schools, so there doesn’t appear to be any increase in students requiring special education.
I have seen news items that cite a drop in diagnostic descriptions like “retarded” dropping in lock-step with the rise in autism diagnoses.
The apparent frequency of Asperger’s in my family in my generation appears no different than in my father’s generation and in my children’s generation. (Interesting genetic pattern; the Asperger’s seems common in my father’s many brothers’ many children, but not in my father’s many sisters’ many children.)
Lisa, this part is interesting:
Non-Hispanic (NH) black and multiracial children had lower odds of ASD than NH white children. Nearly 40% of those ever diagnosed with ASD did not currently have the condition; NH black children were more likely than NH white children to not have current ASD.
Everything that I have personally read has stated that autism rates do not seem to be higher in any one race. My son is biracial (white/black) and he has ASD. His first cousin is black. We are pretty sure it is genetics that play a role in their case of autism.
My question is: Why would NH black and multiracial children have lower rates of autism?
Paula – my guess, though I can’t prove this, is that there are cultural and historic issues that make it less likely for certain groups to be diagnosed.
For one thing, historically (and for excellent reasons), white Americans are more comfortable with the medical establishment than are black Americans.
There are also many cultural differences that make it more likely that white families will seek a diagnosis for developmental differences.
What’s your take on this theory?
Lisa
Lisa you said:
My personal opinion is that we are nowhere near the place where we can truly compare apples to apples (earlier diagnoses to today’s diagnoses) to calculate “true” changes in numbers of children diagnosed. ”
Does that mean you do not accept the validity of epidemiological studies which purport to show increases in autism after removal of thimerosal from (most) vaccines? That is the kind of data used to assert that an autism-thimerosal connection has been “debunked”.
Simon Baron-Cohen has stated publicly on at least 3 occasions that environment has to be involved in causing autism. He based that on the fact that although in many cases when 1 identical twin has autism the other also usually has it, it is not true in about 20% of cases, pointing to an “environmental component.”
The Neurodiversity community seems very upset with Dr Insel. See Kev Leitch at lbrb whose real sin appears to be that he has departed from ND ideology. When Dr Healy and Dr Gerberding did that the ND camp began trashing them. Look for the same to happen to Dr. Insel.
Harold, I can only repeat what I said: I don’t think we’re ready to make an authoritative statement about apparent versus real increases in autism.
There are impressive studies, conducted by well-established researchers, which point to different conclusions. The reason for this is pretty simple: they are all looking at different numbers in different ways.
In order to establish whether or not numbers are “truly” rising, we need to agree on a whole slew of issues which have yet to be nailed down.
For example… are we willing to accept “educational” diagnoses (as this study did) – or only medical diagnoses?
The British study which says adult numbers match pediatric numbers uses a questionnaire which may or may not be acceptable to various commentators.
The California study which points to huge rises uses administrative information which may or may not be acceptable to different groups.
Bottom line, so long as we continue to compare apples to oranges, I remain “agnostic” on the issue.
Lisa
The California study which points to huge rises uses administrative information which may or may not be acceptable to different groups.
Including the CDDS, which cautions on its website that DDS admin data are not reliable indicators of incidence.
The CDC study also notes that 23% of 8-year-olds identified as autistic were mislabeled as non-autistic by their schools, parents and doctors. As more of these undiagnosed / misdiagnosed children come to our attention, the autism rate will continue to climb. That seems like a more reasonable explanation than “vaccines are poisoning our kids, and the CDC, WHO, AMA, FDA, NIMH and the UCLA marching band are covering it up!”
ANB – there’s no doubt that the stats are skewed. But the question of whether and to what degree there is an absolute increase in the number of kids with autism has not been resolved, at least not to my satisfaction.
IMO, if there is an increase it’s relatively small. But that’s just an opinion, and I certainly can’t prove it to be correct at this point!
Lisa
As I’ve written over and over, there is no solid evidence pointing to a true rise in the prevalence of autism. And yet the epidemic myth is the foundation for the entire anti-vaccine movement. Handley calls it “the fork in the road”.
Given the fact that flu, measles and rubella can cause some types of autism, vaccines are probably lowering the rate. Ironies never cease, eh?
Hello friends –
I was particularly intrigued with the statement by Mr. Insel concerning the burden of proof regarding the question of a true rise in incidence or not. My personal take on this is that this correct, but not only because the numbers appear to be rising so dramatically, but more importantly, the ramifications of even a small percent of the observed rise being a true increase.
Lets say that artifacts such as increased ‘awareness’, differential diagnosis, and an ever widening spectrum are responsible for 90% of the increase we have observed. What then? Does a true 10% increase in numbers become something that should be safely ignored? At what percent of a real increase do we declare that this is an emergency? 15% 25% Never?
We don’t need a vaccine causation theory for environmental changes to be affecting our infants. Though the reliability for the science between vaccination and autism is vastly overhyped, there is plenty of room for other environmental and cultural practices to be causing actual increases in the number of children with autism. The biggest tragedy is that the non stop attention on vaccines and vaccines only, and the consequent fear of actually evaluating a very useful tool, may have paralyzed us from looking at the rest of the chemicals our infants are exposed to; all while clinging to thirty year old chart reviews as evidence that nothing has changed in our children, even though the environment they have grown in as changed immensely.
I worry that even though the vaccine causation crowd pushes fear, the no solid evidence for a true increase crowd is pushing something far, far more dangerous; a comforting set of reasons to avoid looking at any environmental influences and the empty assurance that nothing is going astray.
- pD
“The no solid evidence for a true increase crowd?” You mean anyone who takes an honest look at the data? There is no convincing evidence one way or another for a true increase. What you are proposing is that we proceed as if there might be anyway. Here’s another idea – why don’t we just assume that vaccines prevent some forms of autism, and that the anti-vaccine crowd, by hyping false assumptions, is putting children at risk, not only for autism for permanent disability and even death? There actually are credible data for that assumption.
Pd- quite agree.
Lisa
Hi Autism News Beat –
This is exactly what I am proposing.
What problem do you have, precisely, with this proposition? The problem with the alternative, presumably what you are proposing (?), is that we must assume that a full and one hundred percent of the observed increases are the result of artifacts, and for this reason, and this reason only, we proceed as if there is no problem. The problem is, this argument puts us under mandate to take very real, and potentially disasstrous risks based on data you yourself have admitted to be insufficient to reach a conclusion with certainty.
What level of error are you willing to cede to the possibility that some part of the observed increase is real?
What is the risk of proceeding with the assumption that some part of the observed increase is real, and presumably the result of some environmental influence(s)?
What could be a better illustration of the big problem? Did you read this part of my response?
So many people are so engaged with the vaccine theory that it has managed to eclipse any other components of contributory environmetal theories, and therefore all of f the observed increase in incidence must be assigned an imaginary cause.
However, the sake of argument, lets go ahead and assume that vaccines prevent autism, and the anti vaccine crowd is overhyping false assumptions and putting children at risk.
Well, for one, we’d have to assume that the recent study by Baron-Cohen was faulty; adults were vaccinated far less frequency that our infants today, and yet the study still found a 1% frequency of autism; very similar to what was found in the recent study in eight year olds. If your assumption is correct, our children should be experiencing less autism than their adult counterparts, as per the vaccination status and the consequent conferred protective effect. But this is opposite of Baron-Cohens observations, that according to Bill, were ‘well designed and carefully implemented’! Of course, it is possible that Baron-Cohen overcounted people with autism, and thus we can observe the protective effects of vaccination. But then what do we make of Wing. who found approximately 1% in children in 1993, nearly 17 years ago? I’m curious on your thoughts on this.
We could also proceed with castigating the anti vacccine crowd for their actions; the media seems to be doing pretty good with this these days. What else do you propose?
Unfortunately, we still have slews of other environmental, and cultural exposures to be accounted, for if we are to assume that one hundred percent of the observed increase is imaginary.
Take advanced parental and maternal ages. The theory, as I understand it, involves accumulated genetic mutations in the parents of children with autism that eventually knocked loose enough molecules to affect developmental outcome in their children. Studies from several countries have consistently found a mild, but seemingly real trend of having older parents and having a diagnosis of autism. I don’t think that anyone is going to argue that parental ages have increased in the past generation.
But this causes intractable problems for the notion that autism rates have remained stable, we have seemingly changed a risk factor without changing any outcomes. Here’s a question, do you think that accumulated CNVs to progentor cell can result in autism in the offspring? If so, there’s a big problem with your assumption that autism isn’t increasing; it mandates that the gradual increase in parental ages hasn’t had any effect at all on our children, despite your agreement on the theoretical framework behind accumulated CNVs. If you don’t have confidence in this type of mechanism, I’d be curious on your thoughts as to why you feel this isn’t likely?
But, if you do think that accumulated mutations as a result of increased age can result in autistic offspring is possible, we suddenly must contend with the likelyhood that some of the increase is real. Which is it?
Once we admit that some of the observed increase might be real, if we attempt to empricize the cost / ratio benifit of continuing to act as if there is no real increase in incidence, the frailty of your line of argument becomes stark. For example, given evidence we already have no confidence in, why should we assume that advanced parental age is the single and only component to a true increase, and the rest is all artifact?
At the end of the day, we are forced to make decisions on data that everyone agrees is of relatively poor quality; I lobby for caution, and the assumption that some of the environmental exposures correlated with autism rates are causing real and observed increases in autism. I’m honestly not sure what you’d lobby for, except that you don’t like anti-vaccinationists and the data you’ve taken an ‘honest look’ at has failed to convince you of anything.
- pD
Here is an interesting comment of Dr. Insel’s from the interview linked to above:
“My personal sense, just from my clinical experience… when I was in training, I never saw a child with autism. So I went through four years of training as a psychiatrist, including a rotation – a long one – through a year of child psychiatry, and never saw a case. I got interested in autism through work I was doing in basic science research, and I wanted to see children with autism. I couldn’t find them. This was in the mid-1980s, and I had to find a specialty clinic at Children’s Hospital in Washington, and I got to see my first case there. And now I wouldn’t have to go any further than the block where I live to see kids with autism today. So if that’s not a change, I don’t know what is. On a personal experience basis, I don’t think that’s unusual. Most people who I’ve trained with would say much the same thing.”
I have heard many professionals say the same thing — including doctors, psychologists, teachers, and nurses.
I have not read any studies showing that there is not an increase in autism. Which studies demonstrate no increase? The English phone survey was extremely flawed.
No matter how much data is presented — from schools, state agencies, federal agencies, and universities, ANB finds fault with all of it. And of course everyone’s perceptions count as nothing. ANB will never be convinced, never ever.
ANB, you said, “Given the fact that flu, measles and rubella can cause some types of autism, vaccines are probably lowering the rate.” That is completely speculative. I grew up at a time before these vaccines, and everyone came down with measles, rubella, and flu, but autism was extremely rare. I know, my perceptions are worthless as they are not published in a peer reviewed journal.
For the record, I am not anti-vaccine. I believe in the importance of vaccines in fighting diseases. But I believe that we are overvaccinating, and denying problems instead of addressing them. I believe that economic interests are having too big an impact on our vaccine program. I am sick and tired of the term “anti-vaccine” being used for everyone who has concerns about vaccines. People who advocate for safer cars or airplanes are not called “anti-car” or “anti-airplane”. The term “anti-vaccine” is manipulative and propagandistic.
If there is not enough research being done on environmental factors — such as chemicals in our air, water, food, clothing, furniture, etc. — this is not the fault of those who are advocating for recognition of vaccine problems. Autism activists are certainly not preventing our government agencies and mainstream autism organizations and universities from investigating environmental concerns. And, in my experience, people in the DAN!/biomedical community are actually more likely to be concerned about environmental contaminants, not less.
BTW, the MIND Institute at UCDavis is doing some very interesting work investigating toxins in relation to autism.
There was a very interesting story on NPR news the other day about how Merck created a market for it’s drug Fosamax, which is used to treat osteopenia. You can read the whole story here:
http://www.npr.org/templates/story/story.php?storyId=121609815
It is amazing what Merck did to influence the market for this drug. Amazing, powerful, and unscrupulous.
The story concludes:
From Allen’s perspective, by making a treatment for osteoporosis widely available, he helped save millions of lives.
But Mazess, from the Lunar Corp., doesn’t see it that way. “He was complicit in a plot to misdiagnose American women,” Mazess says of Allen.
From Mazess’ perspective, millions of women with osteopenia are now needlessly exposed to the risks of a medication that may not ultimately help them.
The paradox of our health care system is that both of these men are probably right. That is, drug companies produce incredible drugs that can greatly relieve suffering. But one way they profit from those drugs is to extend their use to as many people as possible, which frequently means that medications are used in populations with milder and milder versions of a disease, so that the risks of medicating can come to outweigh the benefits.
This has been a story about osteoporosis and osteopenia. But there are versions of this story about a lot of diseases. Caleb Alexander, a pharmaco-epidemiologist at the University of Chicago, says the dynamic is well understood:
“There’s a powerful economic incentive for pharmaceutical firms to expand the boundaries of the use of different therapies. So whether you consider treatments for osteoporosis or treatments for depression or treatments for high cholesterol — in all of these settings — pharmaceutical firms stand to benefit if the therapies for these diseases are broadly used,” Alexander says. “Even if they’re used among people who have very mild forms of these diseases.”
***
This is so similar to how the vaccine program has been overexpanded to the point of risks outweighing benefits in many cases.
I am almost 50 years old now and have autism or Asperger’s and I don’t feel like people similar to me are all that rare. For several years I have felt that the incidence of autism/Asperger’s will turn out to be around 1% when the formerly unnoticed “mild” cases are included. The higher functioning people like me would easily be missed by most all autism mothers and educational professionals. This is quite a bit due to me not coming into contact with these people. I think the main reason we don’t seem to know of any autistic adults is that we aren’t looking for them.
Actually, I’ve been intrigued by discovering many, many examples of characters in novels written before 1980 that include kids and adults who would certainly be described as autistic (probably HFA or AS). No doubt in my mind that that personality type has been around forever. But that says nothing about a possible RISE since 1980.
Honestly, ANB, I am with Pd on this issue. We KNOW that, for example, allergies and asthma are on the rise. We know some of the reasons – and so far as I know, vaccines are not among them. Why is it so unlikely that some percentage of the rise in autism is “real,” and that there is an identifiable cause?
Lisa
“ANB, you said, “Given the fact that flu, measles and rubella can cause some types of autism, vaccines are probably lowering the rate.” That is completely speculative. I grew up at a time before these vaccines, and everyone came down with measles, rubella, and flu, but autism was extremely rare. I know, my perceptions are worthless as they are not published in a peer reviewed journal.”
Actually Twyla, your perception is contradicted by fact. Maybe pD and Lisa can tell you about CRS, and the great rubella outbreak of 1965-66.
Think a lot of good points have been made here; like Twyla, I’m not anti vaccine or anti penicillin, but it makes sense that people who have severe risk factors of life damaging side effects to either medication, are identifed and not given something that could potnetially cause lifelong harm.
Definitely agree with PD that there may be multiple environmental concerns that should be looked at. And feel there is one/some/ environmental causes that have not yet been identified that are harming our children.
What also surprises me is how some people focus on denying rates are increasing, to the exclusion of everything else. Even if the rate was static why would that make it okay?
Can imagine that mild aspergers could easily have been part of previous generations, and believe that in some cases it more of a natural variant than a disability.
But anything that results in some people potentially living in institutions deserves more focus than a blase comment that it happened in previous generations also..
Viruses and toxic metal exposure are not unique to our generation.
i believe the question of whether or not there is an increase will get answered over the next 10 to 15 years, already there is beginning to be talk about the need for adult services;and more news stories about adults with autism with violent behaviors or getting lost. And ancedotal stories that SSI rates of adults with autism are starting to climb.
But if it is an artifact, rather than a real increase, then over time, we won’t have any real issues, and this will fade away.
Seems hard to imagine though that the latest large increase in a couple of years without any change in diagnostic criteria can really be explained away; but that is just MO,and could be wrong.
Hi ANB; isn’t it strange how people can read the same data and come to completely different conclusions?
Heres how my basic research into the possibility of the MMR actually potentially causing autism or encepalopathy went.
Any really usable studies done? Nope..
So how else can one look at it?
First is there any link between rubella infection and autism?
If no link, then less likely to be a connection.
Congenital Rubella can cause autism so, tick, yes.
Ok ,Rubella is bad for fetuses, (and perhaps potentially babies also..)
Next is there any way that the MMR could in fact infect someone with rubella?
GO to package insert. Yes, MMR contains live viruses.
Ok.
But in that case why isn’t everyone catching rubella from the vaccine?
Answer the live viruses are very weak.
Ok, very weak live viruses. Are they considered safe for everyone?
Back to package insert.
Nope, people with autoimmune dysfunction are specifically warned against the vaccine,as it can give these people the virus.
Thinks to self; who is testing babies for autoimmune dysfunction before the MMR shot?
Well Baby checks don’t routinely include any discussion of autoimmune disorders.
Ok, possible, but in that case, autism rates would be higher in those with potential for immune dysfunction..search google scholar for articles on this.
Bingo, family history of autoimmune dysfunction massively increase chances of autism, up to 1 in 12 in some cases.
And then look at the patient history again; yes some parents state their children experienced severe and acute reactions to the MMR, and regressed immediately following it.
The only answer to the cause of autism; definitely not. Multiple causes of autism are extremely likely. But possibly one potential answer for some cases.
Actually ANB, my perception is not contradicted by fact. Back when almost everyone came down with rubella (instead of being vaccinated), autism rates were very low. I did not say anything to contradict rubella in pregnant women being dangerous to fetuses.
According to BabyCenter.com:
“Before the rubella vaccine was developed in 1969, a rubella epidemic in 1964 and 1965 caused 12.5 million cases of the disease and 20,000 cases of CRS in the United States. In contrast, between 2001 and 2005, there were a total of 68 reported cases of rubella and five reported cases of CRS. And in 2006, there were just 11 reported cases of rubella and only one case of CRS.”
According to deafblind.com:
“When rubella infection occurs during pregnancy, especially during the first trimester, fetal infection is likely and often causes congenital rubella syndrome (CRS), resulting in abortions, miscarriages, stillbirths, and severe birth defects. Up to 20% of the infants born to mothers infected during the first half of pregnancy have CRS. The most common congenital defects are cataracts, heart disease, sensorineural deafness, and mental retardation.”
Again, I am not anti-vaccine. I understand the benefits of vaccines. But we also must understand the risks. For some toddlers the MMR causes lifelong disability and illness. For a larger percentage of toddlers, receiving the MMR at the same time as the varicela vaccine causes lifelong disability and illness. For an even larger percentage of toddlers, receiving the MMR and varicela and flu shot and DPT at the same time causes lifelong disability and illness.
Serious adverse reactions to vaccines must be better understood for the sake of both prevention and treatment. Individual susceptibility factors need to be better understood. As with any medication, risks of the treatment must be balanced with current risks of the illness.
It’s not enough to simply say, “diseases are dangerous, therefore our vaccine program is fine exactly the way it is, even if children today suffer from escalating rates of immune system, neurological, and digestive disorders.” (Of course, I know that’s not what you say, ANB, because you are in denial about the increases and about the causal relationship with vaccines.)
Thanks, Hera, for your very sensible comments!
Back when almost everyone came down with rubella (instead of being vaccinated), autism rates were very low.
The rate for Kanner’s autism 45 years ago was pegged at about 4.5/10,000 (Lotter, 1966). Is this what you mean when you say the rate of autism in the 1960s was low?
I’m not really confident with the findings. I have issue with using a simple has your child been diagnosed as Autistic and have they lost that as solid evidence. There are people I have personally met that have chosen to use an educational diagnosis of Autism for the services. Believe it or not, there are a lot of similar disabilities that do not get even as good of services as Autistics do.
I’m more inclined to agree with the UK study as it used an actual diagnostic tool to decide if the adults do have Autism. I know that not everyone is going to be as accepting of that evidence.
I think a lot where I get agitated with this discussion is the thought of ‘Where do our research dollars go?’ While I do think that it’s intriguing to find out what genes cause what and what environmental causes are, I would prefer to see a lot more going to studies to help increase quality of life. The fact that we aren’t able to get the already known helpful services to enough people is saddening. Is the cause really so important to neglect the living?
Melody
hi Melody, agree with you that quality of life is most important.
My interest in environmental triggers is based on the fact that if we can identify environmental triggers, then babies born today or tomorrow can be protected, because parents will know what to avoid.
If we can identify both who is at risk, and what triggers are likely to cause autism, then again , a generation can be protected.
Agree with you very much that treatment should be focused on; there are many interventions, biomedical and other that have not been researched, and parents and doctors could really use some good peer reviewed studies on them.
It may even be that different causes of autism, require different interventions, whihc may explain why some interventions seem to work extremely well with one person, and are a dismal failure for someone else.
My own pet peeve is “eye gaze” studies.
I agree Hera, if we find out “why and what” we can possibly prevent future cases. Today I was reading about strokes and such, and found this interesting. It could fit with the ratio of boys to girls in autism, perhaps?
Neuroscientist Dr. Donald G. Stein and his colleagues have been investigating this question and have discovered something remarkable — that the hormone progesterone confers profound neuroprotective effects that improve outcomes and reduce mortality following brain injuries.
Progesterone provides powerful neuroprotection to the fetus, particularly in late pregnancy, when it helps suppress neuronal excitation that can damage delicate new brain tissue. Dr. Stein and his colleagues have found that in addition to protecting the fetal brain, progesterone also protects and heals injured brain tissue.