As the October 1st issue of Scientific American Mind reminds us, words have power. I know this even more whenever I hear my son Charlie speak. He was very, very late to talk and he first didn’t talk at all, but used sign language. Today he speaks in short phrases and sentences, and almost-sentences.

A lot of words get thrown around about autism on the Internet, on blogs and newspaper and media websites and who knows where else. Too often, even most often, it seems that the vast percentage of those words are in the realm of misinformation, as the numerous mentions of notions about what causes autism, from power plants in Texas to the quite infamous hypotheses about vaccines and/or mercury. As Dr. Paul Offit noted on his Science Blogs Book Club post today:

A couple of bloggers praised the book for its tone, that I never appeared to get angry at the false prophets described in the book. The reason for that is that I’m not the father of a child with autism. If I were, I would have been quite angry. Angry because I think that the anti-vaccine forces have taken the autism story hostage. And angry that because of their influence, the media almost never carries stories about the real cause or causes of autism.

“Taken hostage”—-yes, that’s pretty much what has happened to autism discussions. Whether about education, safety concerns, how to get your child to eat more: Too often discussion devolves into “but look at this study” and “but you still can’t say 110% plus that there some vaccine won’t lead to some adverse effect in some child.” It’s an oh-so-endless game of bait and switch and if you, as I do, do not think that vaccines or something in vaccines can be linked to autism, it seems you’re d**ed if you do join in the fray, and doubly d**ed if you don’t.

The saddest thing, or thing that makes one maddest, is that–as Kev blogged today—autism has become a secondary concern in these debates. One has only to read the latest Age of Autism post by David Kirby about the “‘weaknesses and limitations’” of the CDC’s Vaccine Safety Datalink (VSD) to feel that much, if not most, of the discussion about vaccines and autism has strayed far away from talking about actual autistic people, like the boy who’s sitting across from me savoring fresh chunks of watermelon as I write this on a Thursday night: That boy lugged a whole quarter melon around a grocery store as we shopped, and slung the bag with the melon and a lot of other food items  over his left shoulder with a grin because he was doing it on his own, and didn’t need my help.

As Dr. Offit has also pointed out in chapter 5 of his recently published book, the information in the VSD needs to be read and interpreted with care; for instance, the VSD lists the diagnoses of children by codes, rather than from “direction information from medical charts” (p. 93). In the VSD (of necessity) it’s a database of information—a child is a code, a diagnosis, with certain features and symptoms; the portrait of a child presented in the VSD (or any database) is an abstraction, a distillation of certain features.

And shouldn’t the discussion about autism be about autistic people, and centered round what autistic people themselves have to say, rather than endless musings about bits of data and numbers and figures?

The prevalence rate for autism among children in the US is 1 in 150, according to the most recently released figured from the Centers for Disease Control and Prevention in 2007. The 1 in 150 figure is based on data from the CDC’s Autism and Developmental Disabilities Monitoring Network (ADDM); the figure represents an average of ASD prevalence among states participating in the project. On its website about ASD prevalence, the CDC states:

In 2006, 224,594 children ages 6-21 and 35,111 children ages 3-5 were served under the “autism” classification for special education services[2]. Not all children with an ASD receive special education services under the classification of “autism,” so the education data underestimate the actual prevalence of ASDs [my emphasis]. For more information about children served through public education programs, go to the IDEA data website

Children can be classified with the code for autism by their school districts, but this is different from a child receiving a formal diagnosis of autism after a full assessment. Further, there are discrepancies among school districts due to their being (for example) rich or poor, and across ethnic and racial groups. So school data, as noted yesterday, need to be understood with certain caveats—-and, accordingly, this chart of autism prevalence based on “public school state rankings” needs to be cited with care. The chart does not provide actual figures about the prevalence of autism in the different states, but of children in public school who have been classified with the autism code for schools and services.

All the more unfortunate that the chart, which is on the website for Fighting Autism, is being treated as if it provides some official figures. An August 20th report from OPB (Oregon) news refers to the chart without referencing it in saying that Oregon’s prevalence rate is “1 in 89″: the chart lists Oregon’s rate as “1 in 88,” while the Autism Society of Oregon refers to the 1 in 150 figure. The OPB report notes a number of real and pressing concerns of parents of autistic children young and old as voiced at a North Portland town hall on Tuesday night; concerns that need to be heard, and presented along with accurate, and actual, information about 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.

July 22nd is a date that stands out to me. It’s the birthday of someone very special, and it’s the day, nine years ago, that we received Charlie’s formal diagnosis of autism.

Slate has a recent Explainer column on how do you diagnose autism (prompted in part by Michael Savage’s claim that autism is widely overdiagnosed). Now Jim and I are convinced that Charlie could have been, and would have been, diagnosed in his first year and this had nothing to do with him being aloof or withdrawn or not wanting to be held or not “bonding.” Charlie was always affectionate, loved to be held, laughed and grinned big when trying to show my parents that he could hold the crib rail and not fall.

But he did seem to be able to keep himself amused with a stack of board books or a pile of baby toys for a long time. A long long time.

And he did do that assymetrical scoot instead of four-limbed crawling.

And he had these four less than sounds that I swore were nascent words. (Swore then; less sure as the years have passed.)

And I just didn’t understand how everyone else’s baby had just sort of rolled over one day. Charlie was nine months old when he rolled over on his own; prior to that, when placed on his stomach, he fussed and cried and howled and, exhausted, let his face sink into the carpet and his body flop over in defeat.

Charlie’s minimal language was the most obvious sign that Something A Little Unusual Was Going On, or rather that something wasn’t going on. Photos and the few videos a relative took (we’ve never been into videoing) show subtle signs, in the way Charlie’s eyes were focusing (or not), in his frequent fascination with objects in some sort of order or pattern, in his lack of joint attention. Charlie showed plenty of interest in (certain) things, but (as I only realized in retrospect) he did not try to show and share those things with us. It didn’t seem so much that he was anti-social, as that he was social in a different way, and had been ever since he was born.

A new study published in Social Neuroscience suggests that these social deficits, or rather differences, arise because of (quoting Science Daily) there are

….inefficient pathways for transmitting information between certain brain regions are to blame. The research implicates abnormalities in the brain’s inter-regional communication system, which connects the gray matter’s computing centers.

“The communication between the frontal and posterior areas of the social brain network is impaired in autism, making it difficult to understand the intentions of others” said the study’s senior author, Marcel Just, the D.O. Hebb Professor of Psychology at Carnegie Mellon.

The study is the first to measure the synchronization between the brain areas that make up the Theory of Mind (ToM) network, which is responsible for processing the intentions and thoughts of others. It is the first to provide such concrete evidence of faulty social network connections.

Researchers asked 12 “high-functioning autistic adults” and 12 controls to view animations of geometric figures interacting (a link can be found ). Participants were asked to select a word that would best describe the shapes’ interactions:

For example, a large triangle would nudge a small triangle to move outside its enclosure, and the correct word choice would be “persuading.” The control subjects were consistently better at inferring the intention from the action than the participants with autism were.

The suggestion is that the autistic individuals had more difficulty reading social situations and divining the meaning that “most people” would from them (if seeing one triangle nudge the other is an example of a social situation).

Charlie does display what appears to be “Theory of Mind” in some situations; there’s a reason he tells me “bye Mom” and gives me The Stare when he’s poking his nose in a kitchen cabinet—-but what certain gestures (a clap on the back? a fist-nudge off a shoulder?) mean, leaves him guessing. Sometimes Charlie will start doing some of those gestures though without the original intent. He’s been occasionally bending over and making loud coughing noises that lead people (like the bus driver) wondering if he has a caught a cold?. We know he’s imitating his grandfather coughing, though I suspect Charlie is making those sounds because he like the sound and feel of them. Charlie’s aware of social gestures and practices, but he seems to notice some few of those gestures and practices and then, sometimes, to repeat them quite out of context.

On a similar note: Charlie’d seem to have burgeoning imitation skills when, around 10 months old, he started raising an arm over his head when Jim did the same. I still remember Charlie in his teddy bear high chair raising up that arm in imitation of Jim, briefcase in hand and headed off to teach. After a few weeks, we noted that Charlie, at the sight of Jim at certain moments, started raising up his own arm in fervent earnestness when Jim raised his. Then Jim started to raise both arms over his head and—ah, hindsight—-Charlie kept raising one. “Guess he’ll get it one day,” we thought, little knowing that day would occur at least two years later and in a different Midwestern city that we had moved to—St. Paul—-and while Charlie was learning to do “gross motor imitation” in a home ABA program.

By the time we were sitting in the Child Development Clinic of the Minneapolis Children’s Hospital and getting the yellow-paged report from a glibly compassionate social worker, Charlie’s “symptoms of autism” were fully apparent. The Slate column on how do you diagnose autism notes that

Per the DSM, clinicians should diagnose a child with autism only if he is judged to have six or more social and linguistic impairments. The threshold is lower for so-called “autism spectrum disorders.

Charlie, you can be sure, had more than six of those impairments.

He still has plenty; Charlie was born with autism and autism is a ilfelong disorder, and he and we’ve done worked very hard to help him achieve the most he can. When he was diagnosed at the age of 2 back in 1999, we didn’t know what to think as we read that children were often diagnosed at 4 and 5 and 6. Was Charlie so severe that he was so young, and had a diagnosis?

Jim and I wondered that on a hot day nine years ago in Minnesota. But we also felt a sense of relief. The yellow evaluation report was just a rubber stamp of the reality we’d known about for months and that Jim had already thought was the case, and I had dragged me feet to accept. We were able to start Charlie’s education from that moment on and yes it’s been at times a long and bumpy road.

Autism is the “disease du jour” and that’s not necessarily bad. While Charlie was diagnosed while young, am wondering (as awareness of autism continues to grow) if autism will be diagnosed more in older children, as ADHD is in older children according to a CDC study. Perhaps all I might say is that I’m glad to live in a time when hot air talk show hosts mouth off about topics they know little, very little, about, and we get a chance to spread information, and truth, and love, about what autism isn’t, and what it is.

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.

According to an April 22nd Scientific American piece about the case of Hannah Poling—the 9-year-old Georgia girl whose “pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots” according to a concession by the federal government and who was awarded a settlement:

“….. scientifically, from the documents presented in the vaccine court, the Polings did not make a case that deserved compensation.”

Here’s why their case did not deserve compensation, as noted by Nikhil Swaminathan in Scientific American:

Hannah’s disorder is likely due to a rare mutation in her DNA. Most of the DNA responsible for mitochondria is inherited from mothers, because mitochondrial genes are carried in the egg but not sperm. Salvatore DiMauro, a mitochondria expert at Columbia University, notes that the point mutation mentioned in Poling’s case history–published in the Journal of Child Neurology–would imply that both she and her mother carried the genetic variation in all their tissues. So, he says, “you would expect to see the same results” in both the mother and the daughter. But Poling’s mother, Terry, who is an attorney and a registered nurse, is not autistic.

That suggests the genetic defect responsible for Poling’s condition is part of her nuclear DNA, which is separate from the mitochondrial variety, says DiMauro. This means that, scientifically, from the documents presented in the vaccine court, the Polings did not make a case that deserved compensation. (Attempts to contact Jon Poling about DiMauro’s concern went unanswered; however, he agreed that his daughter’s causative genetic defect was likely not in her mitochondrial DNA in an open letter on the blog NeuroLogica.) [my emphasis]

Mitochondria are often called the “power plants” of cells because they convert sugar into energy. Found in all of the body’s tissues and organs, “when they do not work properly they can cause or worsen diseases from diabetes to brain disorders.” But, according to Swaminathan, Hannah Poling’s “genetic defect” was not caused by her mitochondrial DNA, but is a part of her nuclear DNA, which is inherited from both parents.

Dr. John Shoffner, a neurologist, geneticist, and mitochondrial disease expert, agrees with this conclusion:

…. In a study of 40 patients with autism—including Poling, he found that two thirds had muscle weakness. If muscle weakness is seen early on in children, it may be a tip-off to an underlying mitochondrial disorder that could cause autism, because muscles are heavily dependent on mitochondria as an energy source. He also believes that the new work—he presented preliminary results last week at the American Academy of Neurology Conference in Chicago—will help explain why some children, such as Poling, experience worsening symptoms as a result of a fever.

He notes that the route from the vaccine to the child’s autism was by no means direct. Hannah’s mitochondria were already underperforming, so when she developed a fever from her vaccine, the increased energy requirements likely pushed them past their thresholds. A fever caused by an ear infection or the flu would likely have triggered the autism symptoms if they occurred before or between the ages of 24 and 36 months, he says, which is when classic, regressive autism, which affects one third of sufferers, usually appears.[my emphasis]

Shoffner notes that parents and advocates looking to impugn vaccines as triggers for autism—or mitochondrial disease—need direct, not just circumstantial, evidence……..

Jon Poling, says Shoffner, has been “muddying the waters” with some of his comments. “There is no precedent for that type of thinking and no data for that type of thinking,” Shoffner says.

What’s not “direct,” Dr. Shoffner notes, is how vaccines may have “caused” autism in Hannah Poling whose mitocondria were “already underperforming” when she received her vaccinations. And isn’t the alleged role of vaccines in “triggering” autism in Hannah precisely why this case has received so much attention? And what if the role of vaccines in “causing” autism in Hannah is, as  Scientific American suggests,  as “direct” as it has been made to seem?

“It wasn’t like a switch being turned off….It was more like a dimmer switch being turned down.”

I’ve read this quote from Dr. Jon Poling, the father of Hannah Poling, in more than a few news stories and most recently in one today in the Philadelphia Inquirer. Dr. Poling uses the metaphor of a dimmer switch to describe how his daughter changed after receiving five vaccines at the age of 18 months:

Almost immediately after, she was screaming, feverish and irritable. Then her behavior gradually changed so she would stare at fans and lights and run in circles.

Dr. Poling’s choice of metaphor—-that the change in Hannah was gradual, like a “dimmer switch,” rather than sudden, as when a light is turned off and a room goes dark—is somewhat different from how some parents describe the reaction of a child after receiving a vaccine. Many parents talk about how their child went from being a normal child “overnight” to an autistic one:

“Two of my kids developed autism overnight after getting multiple vaccines…stopped speaking and looking us in the eye, cold.”(comment by aluminumfree on SFGate.com)

“This isn’t just one parent saying that their child developed the signs of Autism overnight. This is thousands, if not millions of parents who are saying [this]…..) (from a messageboard about the Hannah Poling case)

To say that a child develops autism “overnight” would suggest that a child suddenly developed autism—more of a “the lights suddenly went out” kind of comparison. But Dr. Poling seems to be taking care to use a different metaphor, that of a “dimmer switch” that is “being turned down.” The change in his daughter, his choice of words seems to suggest, was gradual, rather than sudden. I gather that he is using the “dimmer switch” metaphor to show how his daughter was originally typical; the word “bright” has also been used to describe Hannah, prior to her receiving the vaccines.

Not the biggest distinction, but—as has been noted before—-words matter a lot when we’re talking about autism. Especially important are the words that a parent uses to represent an autistic child, who may well not be able to (literally) speak for her or himself.

Here are two bloggers who do some careful reading and shed some light on the case of Hannah Poling. Over at Grey Matter/White Matter, Sullivan carefully reviews the rules for the vaccine court and notes some errors in statements made about this by David Kirby. At Stop.Think.Autism, S.L. looks at a paper with the suggestive title of Evidence of Mitochondrial Dysfunction In Autism and Implications for Treatment and finds that the treatment suggested is the biomedical DAN! Protocol (DAN! as in “defeat autism now”) ; the authors of the paper are DAN! doctors in Melbourne, Australia, and suggest that experimental biomedical treatments like chelation and hyperbaric oxygen therapy be used.

Now it’s getting clearer and clearer why Kirby was trying to reclassify autism as “mitochondrial disorder” in his first piece about Hannah Poling a few weeks ago; that article, and his subsequent posts, are (S.L.) writes, are further attempts to suggest that “autism is in fact a physical disease, an illness, which requires treatment or a cure,” and one caused by some environmental factor.

Finally, here’s one article in the Sunday Sun with one of the most misleading headlines yet: “Court links MMR to autism.” No, that’s not what the court said, and you don’t have to read the fine print to know that.

If you can remember back to before Thursday when Hannah Poling’s parents had their news conference and before every other autism news headline seemed to blare (not entirely accurately) “Government concedes vaccines linked to girl’s autism,” a few other things were being talked about this week: Senator John McCain’s misguided statements about “evidence” linking vaccines to autism, a study about hyperserotonemia and autism that some of us are still trying to figure out, another well-known person–golfer Ernie Els—-announcing that he has an autistic child. Having spent most of the week sick and coughing, I’m glad to be able to talk again.

• The Verdict on McCain on Thimerosal and Autism
  Members of the autism community, scientists, and political commentators speak out about Senator John McCain’s saying that “‘there’s strong evidence” linking thimerosal for the increase in diagnoses of autism in the US.
• Brandon Williams Was Only 5
  5-year-old Brandon Williams died on Wednesday night, March 21st, 2007. His mother, Diane L. Marsh, had given him six to seven Simply Sleeps, five to six Tylenol PMs, two chewable aspirin, and a tablespoon of Benadryl. When medics tried to revive him, they noticed signs of abuse on his wrists, ankles, and feet.
• Sick, But I’m In Good Hands
  I come down with bronchitis and laryngitis, and Charlie helps out.
• 5 Feet High and Not Rising
  Shorter women may have very long lives, according to a new study: I’m glad to know it.
• Hyperserotonemia and Autism
  A new study on “hyperserotonemia”—elevated levels of serotonin in the blood—in children with autism.
• The Case of Hannah Poling
  Hannah Poling is the 9-year-old autistic child whose “pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots,” as was conceded last week by the government in the Court of Federal Claims.
• What the Government Said and What It Didn’t
  The government has not conceded that vaccines cause autism “even after a Georgia girl won federal compensation in a case arguing a vaccine led to her brain damage”: Dr. Julie Gerberding, director of the U.S. Centers for Disease Control and Prevention, states that “‘Let me be very clear that (the) government has made absolutely no statement about indicating that vaccines are a cause of autism.”
• About This Autism Debate
  Actually, there is no debate about vaccines and autism, and there is no link—–and there are some parents (like me) who know that vaccines did not cause their child to become autistic.
• Just Relax You’re At the Dentist
  Would you use oral conscious sedation on an autistic patient at the dentist?
• Jenny, We Hardly Knew Ye (2)
  A former Playboy playmate calls for the resignation of a top US science agency to resign……I wish I was making this up.

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Special thanks to The Science Business by Matthew Herper for mentioning Autism Vox as an autism debate go-to blog.