September 5, 2006: Many news sources report on a study in the Archives of General Psychiatry. After analyzing the military records of more than 300,000 men and women in Israel, researchers found that men in their 40’s are nearly six times more likely to have an autistic child.

October 1, 2008: The Telegraph reports on a study by Japanese researchers that found that men over 33 were more likely to have autistic children. The study is published in the British Journal of Psychiatry. 84 children with “high functioning autism” and 208 children without an ASD were in the study which, it’s acknowledged, was small in scope:

Children whose fathers were over 33 were 1.8 times more likely to have autism than those fathers were under 29. Men who fathered children between the age of 29 and 32 were 30 per cent more likely to have an autistic child.

“High-functioning autism” was defined, for the purposes of this study, as having a full-scale IQ of at least 70, with a DSM–IV autistic disorder or related diagnosis.

No association between autism and maternal age was found in the new study. Older mothers have also been suggested to be more “at risk” for having an autistic child, according to a study conducted by researchers at Kaiser Permanente’s Division of Research in Oakland, California, under lead author, epidemiologist Lisa Croen.

But do these “old dad” theories too quickly put the blame—unrightly—-on fathers?

Coming your way………Causecast, “a powerful online social medium that connects nonprofits, leaders, brands and individuals to those who want to make a positive impact on the world,” according to a press release. Already a Featured Leader is Generation Rescue board member Jenny McCarthy who has “long been a vigilant fighter in the search for a cure for autism”: A year or so is a “long” time?—sorry, being a teacher and translator of Latin and ancient Greek who is married to an American historian, I have a slightly different definition of “long.”

I do know, I’m in it for the long run with Charlie, and autism.

Darn, I thought it was my own state of New Jersey that does: According to the most recent figures released by the Centers for Disease Control and Prevention in 2007, about 1 in 150 8-year-old children in multiple areas of the United States had an ASD, and New Jersey has the highest prevalence rate, 1 in 94. An article in the August 20th CityPages in Minnesota suggests that it’s rather the North Star state that has the highest rate, 1 in 81.

The CityPages article mentions a 2001 CDC study but not the more recent one in 2007, though it does cite the 1 in 150 figure. For the 1 in 81 figure, the article relies on a chart made up from data from public school districts around the country. (You can see the chart here via a parent’s website.) The parent of an autistic child, Dan Hollenbeck, arrived at this figure by finding the number of cases of autism services provided by each state’s public schools and then dividing this by the number of children enrolled. The figures that Hollenbeck arrived at provide an idea of how many children who are classified under the code of autism are receiving services in school districts across the US. But, it should be noted that school districts around the country vary in how they classify children as needing to receive services for autism, and services and programs for autistic children in public school vary widely from state to state (and within states—that’s certainly the case here in New Jersey–between rich and poor school districts, for instance). More than a few children classified under the autism code wouldn’t be diagnosed with autism if a full diagnostic assessment was done.

Further, Hollenbeck is the Director of Technology at Thoughtful House, an Austin-based center which is “fighting for the recovery of children with developmental disorders through the unique combination of medical care, education, and research.” Dr. Andrew Wakefield (the figure at the center of the MMR-autism controversy) is on the research staff of Thoughtful House, which says that we are “in the midst of an epidemic of developmental disorders that includes autism, Asperger’s Syndrome, attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), pervasive development disorder (PDD), and nonverbal learning disorder (NLD). And, Hollenbeck and his wife, Laura Hewiston (the researcher behind a certain infamous poster presentation on monkeys and vaccines) are listed as litigants (see #437) in the Autism Omnibus proceedings in which some 4800 families are claiming that vaccines injured their children and causes them to become autistic.

In other words, there is some motivation for Hollenbeck to offer data that suggest that the rates of autism have risen “epidemically,” and especially due to vaccines or something in vaccines. (And, CityPages needs to make a few clarifications about the data that it is using.)

The 1 in 81 figure suggests that educators in Minnesota are very aware about autism and about providing services for children. And that’s certainly also the case in New Jersey which, according to Hollenbeck’s figures, has 1 in 115 children with autism, which is rather counter to the CDC’s 2007 figures, and rather counter to what the “Jerseyan in the street” would tell you about autism here. Down here at the shore on Tuesday morning, my son Charlie got over-stimulated in a bakery—chock full of vacationers and display cases—-and someone who is probably the owner appeared from the back; he has an autistic grandson. (We’d always noted a collection jar for autism events on the counter.) Last week, there was a young autistic man in the waves with his father every day, and this week there’s a boy a bit older than Charlie. And there’s Charlie himself; when we tell the lifeguards about why it’s so hard for him to understand about “swimming flag to flag,” saying “autism” is pretty much all that needs to be said. Back home, there’s our school district which has a quite high rate of autistic students compared to the overall total of students—-because it’s a district with a very strong autism program and also special education services, and many families (like us) have moved to it for that reason.

No discussion of autism rates among students (and no discussion of the so-called “autism epidemic“) is complete without keeping in mind Washington University Paul Shattuck’s 2006 article on The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education,” in which he found that, as the rates of the autism diagnosis increased from 1994 to 2003, the rates of diagnoses of mental retardation and learning disabilities decreased. George Washington University anthropologist Roy Richard Grinker’s 2007 book Unstrange Minds: Remapping the World of Autism further explains how historical and cultural factors have led many to feel and even to believe that there is an epidemic of autism, in no small part due to our better understanding of autism, broadened and refined diagnostic criteria, and a huge increase in public awareness. There’s more and more research going on about the causes of autism: The August 19th KQED has a report on northern California researchers who are studying the causes, especially environmental ones , of autism. A blog details a video report, which can be seen here. Researchers are studying seemingly everything from dirty diapers to carpet dust in an effort to find if there are any “risk factors” that an expecting mother might encounter, that might be linked to her having an autistic child.

Having gone from Minnesota back to Jersey by way of California in this post, I have to note that we’ve connections to all three of these states. Charlie was diagnosed in Minnesota, has receive most of his school education in New Jersey (Jim’s native state), and I’m California born and bred, and there’s no question that, in all of those states (and in Missouri, where Charlie was born), we’ve encountered many autistic children. But then the chicken or egg question arises: Is the increase in autism is due to something specific that can be pointed to, something external and in the environment; or is it because of our being able to better detect and diagnose autism, significant changes in the diagnostic criteria for autism, the steady rise in public awareness about autism, and the increase in services, schools, therapies for autism (and college students)?

We’ve got the technology to measure Michael Phelps winning his seventh gold medal by .001 of a second—surely we’re better able to count cases of autism?

“It’s the media’s fault.”

How often do you hear that, or even say it to yourself, on hearing some tired myth or piece of misinformation about autism stated yet again? Michael Savage’s over-the-top “99% of kids are no autistic but brats” comments is but one example.

An article by a team of bioethicists and available online August 6th in Neurology examines media coverage in America about the Terry Schiavo case. In 1990, Schiavo had a cardiac arrest that led to irreversible brain damage and a “persistent vegetative state” diagnosis. From Science Daily:

“In the course of our research, we were surprised by the amount of medical inaccuracies that these newspapers had published, said Dr. ÉricRacine [of the Institut de recherches cliniques de Montréal (IRCM)]. Some journalists even wrote about Mrs. Schiavo’s reactions to specific words or expressions supposedly showing that she was conscious.” More than scientific and medical information, the legal, political and ethical dimensions made the headlines.[my empahsis]

Only 1% of the articles examined gave a definition of the “persistent vegetative state,” an essential concept to understand the issues at stake. The persistent vegetative state is an established neurological condition characterized by severe lesions to the cerebral cortex, which eliminate higher functions: inability to communicate, absence of memory, absence of pain, etc.

However, the brain stem responsible for vital functions is not damaged, which accounts for the patients’ reflexes and their ability to breathe and swallow independently. Despite the fact that Terri Schiavo’s medical condition did not allow any reasonable hope of recovery, a fifth of all articles (21%) contained statements according to which her condition would improve. “Our observations show that the press capitalized on the controversy to a large extent, and selling copies mattered more than delivering scientific information [my empahsis]. Media coverage sustained myths and false hopes,” explains Éric Racine.

More than scientific and medical information, the legal, political and ethical dimensions made the headlines.

….[T]he press capitalized on the controversy to a large extent, and selling copies mattered more than delivering scientific information….

Apply these sentences to coverage of autism in the mass media (calling on some recent reports in CBS…..), and of the hypothetical vaccine-autism link in particular, and certain things resonate.

Controversy sells.

Over at Primary Source in an August 1st post, Sharyl Attkisson discusses the case of Hannah Poling and says that “it’s the first time we know of that the government has ‘conceded’ an autism case in vaccine court.” Attkisson then writes:

But CBS News has learned the government has previously been court-ordered to pay on other vaccine injury cases in which a child ended up with damage including autism or autistic symptoms [my emphasis]. In one case from 1986, the child had a pre-existing condition that the court decided was aggravated by his vaccinations. Here, the pre-existing condition was “tuberous sclerosis” or TS. According to court testimony, many children with TS will suffer seizures and brain damage. However, the longer they can go before having their first seizures, the better off they are. In this case, the court listened to scientific evidence on both sides and determined that the child’s DPT shot* probably triggered his seizures, perhaps earlier than they would’ve otherwise occurred. At first, the government agreed to pay for the child’s seizure medication but refused to compensate for his autism and mental retardation saying they were caused by the TS rather than vaccines. However, not unlike the government’s concession in Hannah Poling’s case, the court found that vaccines aggravated the child’s pre-existing condition, and were therefore responsible for his mental retardation and autism.

CBS News is, it seems, catching up to what’s already been reported on the internet and specifically the autism blog community. Earlier this year, on March 11, Kathleen Seidel reported on the Neurodiversity weblog that there have been at least nine instances in which compensation for a vaccine injury has been provided for under the Vaccine Injury Compensation Program (VICP).  The case that Attkisson refers to seems to be this case, as noted by Seidel:

Suel v. HHS (Case 90-935V, 1997 U.S. Claims LEXIS 210, September 22, 1997)

DPT vaccine administered in the 1980’s.

Aggravation of tuberous sclerosis in a child diagnosed with autism.

Richard Gage, counsel for petitioner; Laura Millman, Special Master

As Seidel writes, “the autism diagnosis followed the development or aggravation of profoundly disabling physical conditions.” She briefly lists the eight other cases in which families were awarded compensation. Hannah Poling receiving compensation is, as Seidel states, “in fact, not news at all.”

Good to know that others are catching up on the “not-so-hidden history” of the VICP.

No.

TV does not cause autism. Reports of a study about this theory were everywhere in the fall of 2006, after the study’s authors posted their (then yet unpublished paper) on their website. Since then, the study’s been referred to as “just plain stupid” and has been more recently cited here. And it’s also been noted that the “TV causes autism” study implicitly blames parents who just let the TV do the parenting, or at least some babysitting.

If by chance any of you drop into my living room/Jim’s work space/Charlie’s space, and if you have the TV-autism theory in mind, you need fear not. We don’t have a TV. In fact, we don’t have a VCR and Charlie, the boy who is being taught to play Nintendo (don’t worry, I am saying no to Grand Auto Theft), barely watched it when we did, and that was the case with Charlie as a (yet undiagnosed) toddler, unless a few choice Barney/Teletubbies/Wiggles shows came on.

On to the next theory of autism aetiology……..

Dr. Antonio Hardan, the director of the autism clinic at Stanford’s Lucile Packard Children’s Hospital, says this in a July 9th ABC Local (Bay Area) report about increases in autism diagnoses throughout the region:

“If you are diagnosed with autism you will get more services from the county from regional centers than if you just have an attention deficit hyperactivity disorder or depression.”

90 percent of Bay Area schools reported a rise in children with autism between 2005 and 2007, with Santa Clara County having nearly eight autistic kids per 1,000 students—-note that this figure is not about an actual increase in the number of children diagnosed with autism, but in the number of autistic children reported by school systems. Washington University professor Paul Shattuck has found that the number of children with an autism spectrum disorder diagnosis increased at the same time as the number of children receiving diagnoses of mental retardation and learning disabilities decreased (here is the study in the 2006 Pediatrics).

In my own experience, I’ve heard more than a few parents talking about getting an autism diagnosis rather than one for Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), as an autism diagnosis is more “severe” and can lead to more services. Since Charlie was diagnosed with autism in July of 1999—-nearly nine years ago—I seem to have heard fewer parents saying that their child has PDD-NOS. I’ve rather heard references to “mild autism,” “classic autism,” “severe autism”—-terms that can seem precise to a user, but which still need qualifications.

Johanna Jaeger, whose 14-year-old son Alex is autistic, is also quoted about what is behind the increase in the ABC Local report:

“Parents don’t make this stuff up to say, ‘oh gosh, I can’t wait to get into that system.’……….You know it’s not a club that most parents look forward to joining.”

It’s a sort of chicken and egg question, perhaps, whether or not you think the increase in autism is due to “something” specific that can be pointed to, something external and in the environment—-or whether it’s because of our being able to better detect and diagnose autism, significant changes in the diagnostic criteria for autism, the steady rise in public awareness about autism, and the increase in services, schools, therapies for autism (and college students).

It seems that everyone with a young child is concerned about detecting “signs of autism.” Certainly I’ve noted parents of toddlers in the wading pool taking a good look and listen to Charlie and then glancing back at their own child (and looking visibly relieved at times; so it goes). With more tests being developed to look for autism in infants, more children may be diagnosed or be put in the “possibly maybe wait and see” category. And if your child is autistic, parents so often find that a diagnosis — a label — can seem just a bunch of letters, some of which might provide more services than others.

35 years ago, the only reason we went to San Jose was to visit a now-defunct amusement park, Frontier Village (think bears in overalls with corncob pipes). San Jose meant farmlands and orchards and dusty streets, not “high-tech corridor.” I didn’t know anyone with autism or what autism is. I wasn’t looking: Was anyone then?

After my son was diagnosed with autism in July of 1999 and we had started him in a home ABA program in September of 1999, and as we found ourselves spending more time with families with autistic children, and as we read more and more (in books, on the web) about autism, I started to feel that I could spot an autistic child immediately, across however crowded a room. I knew the things that made Charlie different and had started to see flashes of these in other children and was somehow reassured: We weren’t alone.

Over time, though, I’ve become less sure, or a lot more cautious, at saying that someone has autism or not. My understanding of Charlie and of autism has deepened over the years, but so has my knowledge of the factors involved in giving a child an autism diagnosis. Here in New Jersey, a diagnosis of “autism” can provide a child with more services than one of “PDD-NOS” and, often, more than one of “Asperger’s Syndrome.” Studies like that by Washington University professor Paul Shattuck—which found that, at the same time as autism diagnoses increased, the number of diagnoses of mental retardation and learning disabilities decreased—suggest that diagnosing autism has a bit more art in it than one might at first think. People seem, too, to regularly under-emphasize how the significant changes in the diagnostic criteria for autism and the steady rise in public awareness about autism have contributed to more diagnoses, and even to more people seeking out a diagnosis, as anthropologist Roy Richard Grinker argues in his book Unstrange Minds: Remapping the World of Autism.

It’s helpful and even necessary to keep in mind how our evolving understanding of autism— and a “peculiar fascination” with autism in the contemporary media, to cite a recently published book—has contributed to more children and, too, adults, being diagnosed with autism. This growing understanding of autism has, it has been argued, contributed to the rise in the prevalence rate of autism (now 1 in 150, according to figures released by the CDC in February of 2007) and this expanding understanding of autism needs to be taken in account when reviewing studies about autism in the past several years.

Some proportion of those studies have looked at possible environmental causes of autism, such as vaccines or something in vaccines. The numbers are the thing here: If it can be proven that there is a definite increase in autism in children who received (for instance) vaccines containing the mercury-based preservative thimerosal, then it would seem that a culprit for the increase in autism has been found. A few months ago, much was made of the case of Hannah Poling, after the government conceded that the 9-year-old Georgia girl’s underlying mitochondrial disorder had been “aggravated” by vaccines and led to symptoms of autism. The question has been, was what happened to Hannah unique to her only, or is there some “hidden horde of autistic children with underlying mitochondrial disorders? (So far, the answer seems to be “no.”)

Researchers need to study large populations of subjects; epidemiological studies look at “how disease is distributed in a population and of the factors that influence or determine that distribution” (Do Vaccines Cause That?, p. 53). Consequently, databases of cases—from HMOs, for instance—can provide sufficiently large sample populations for scientists to study. One such database that researchers have used is the Vaccine Safety Datalink (VSD), which was a project created in 1990 by the CDC and which, “as of mid-2007, involves partnerships with eight large health maintenance organizations (HMOs) that continually monitor vaccine safety” (Do Vaccines Cause That?, p. 62). The VSD contains information from more than 5.5 million people in Washington, Oregon, California, Colorado, Minnesota, and Massachusetts.

The VSD has both its strengths and limitations. It is a large database and allows researchers to access data from all medical visits, types of vaccine, date of vaccination, concurrent vaccination, the manufacturer, lot number, injection site, and potential adverse events (Do Vaccines Cause That?, p. 62). Its limitations include the following (see Do Vaccines Cause That?, p. 65-6, for fuller explanations):

- “the population in the participating HMOs is not wholly representative of the United States in terms of geography, ethnicity, or socioeconimic status”;
- “vaccine coverage rates for most vaccines are very high in the participating HMOs, and thus there are usually few non-vaccinated people available for comprehensive comparisons”;
- “the project is not large enough to examine the risk of extremely rare events (one in a million vaccinees) such as Guillain-Barré syndrome after influenza vaccine”;
- “because the database contains patient records, it can only be accessed under circumstances that maintain the confidentiality of the individuals and requires prior approval of an Institutional Review Board.”

Some of these caveats would seem to behind a recent report by CDC director Dr. Julie Geberding about the limitations of VSD data in studying vaccines and autism. The report follows a 2006 panel convened by the National Institute of Environmental Health Sciences (NIEHS) and considers the “feasibility of using VSD data in an ecological study to compare rates of autism disorder (AD) or autism spectrum disorders (ASD) before and after the removal of thimerosal from most childhood vaccinations.” The report has been uploaded as a PDH file on journalist David Kirby’s EvidenceofHarm website and he indicates that he was given the report by a “Capital Hill staffer” (similarly to how “someone” gave him documents about the case of Hannah Poling, which Kirby made available prior to protocol). Kirby’s assessment in that the report is a sort of “mea culpa” on the part of Dr. Geberding and that it suggests that the design of studies about vaccines under the CDC are “‘uninformative and potentially misleading.’” There are concerns about the VSD, but not in the sense that Kirby might wish (a “startling string” of goofs and mistakes by CDC researchers). Rather, the report highlights what EpiWonk refers to as the “ecological fallacy,” in which

Given the increase in frequency of autism (and other neurodevelopmental disabilities) during time time period, you could do an ecological regression analysis of almost any factor that varied over time and you would find an an association with autism. I would bet that you could enter number of sushi bars per capita into an ecological regression and you’d find an association with autism rates.

The report itself notes:

Ecological studies are based on aggregate-group level data collected over time, rather than individual data. There are many limitations of ecologic analysis, such as differences of exposure levels and covariate levels within the study group, challenges in controlling for confounders [this problem is specifically addressed by EpiWonk], and within-group misclassifications that lead to potentially severe biases in the interpretation of the results. These problems severely limit the interpretation of causality, particularly biologic causality, from a study that relies solely on ecologic analysis. For example, trends over time may coincidentally appear to be related even if there is no cause-and-effect relation.

It goes without saying that “vaccines and autism” is a hot topic and it’s no wonder that the CDC is taking some pains to be careful about the sort of data that it uses and the design of its studies. For all of the greater awareness and understanding about autism out there, people are still wary of an autism diagnosis and of an autistic person in a public place acting “different,” but that’s another topic.

There are plenty of autistic children, teenagers, adults, out there. There’s also plenty more to learn about vaccines but that, too, is a separate topic.

And be sure not to miss Epi Wonk posts two cogent critiques of David Kirby’s flawed reporting.

Electrical pollution linked to autism in children?

Actually, you already heard of this latest idea about what causes autism here.

Do childhood vaccines cause autism? (KSDK, St. Louis)

No.

Vaccinations do not cause autism.

Source. Source. Source.