Back in July, it was reported that the rate of autism in Somali children in Minnapolis was notably high. According to the Minnesota Department of Education:

in the Minneapolis’ early childhood and kindergarten programs, more than 12 percent of the students with autism reported speaking Somali at home. According to Minneapolis school officials, more than 17 percent of the children in the district’s early childhood special education autism program are Somali speaking.

Almost 6 percent of the district’s total enrollment is made up of Somali-speaking students, and about 6 percent of the children in the district’s overall early childhood and kindergarten special education programs are Somali.

Speculation about what could be causing this “cluster” of autism cases in so specific a population immediately started up, especially among proponents of environmental causes of autism such as journalist David Kirby. Mike Stanton at Action for Autism gives an overview of all this, and notes how Kirby and others sought to connect the Somali autism rate—or, more precisely, the rate of autism among children born in the Minneapolis area to immigrant parents from Somalia—to vaccinations, and also to a theory that a Vitamin D deficiency can be linked to autism. Dr. Steve Novella at the Neurologica blog writes specifically about the notion of a “cluster” of autism cases being found:

apparent clusters of diseases are reported all the time. Most of the time the clusters are not real, meaning they are just statistical flukes. So the first question to answer with any apparent cluster is - does this represent a real epidemiological phenomenon.

……….

One problem with the cluster hypothesis is that other immigrant Somali communities have not experienced increased autism rates. If there is an environmental trigger causing the two identified clusters, why are there not clusters in these other communities?

If it turns out to be true that autism rates have significantly increased in some Somali immigrant communities, above what is seen in Somalia or in non-Somali in the same communities, then we can conclude that something is going on and a potential trigger should be sought.

It also has to be noted that autism is really a collection of diseases, not a specific disease. So we may be seeing a new entity that has clinical overlap in features and symptoms with recognized forms of autism.

Dr. Novella writes that more investigation is indeed needed about the Somali “cluster” and if it is real, and what factors might be playing a role, whether genetic or environmental. He references an article from the Simons Foundation Autism Research Initiative that cites Judy Punyko, an epidemiologist at the Minnesota Department of Health. I August, Punyko formed a study group of 12 experts (including epidemiologists, physicians, school administrators and special education teachers) to study the rate of autism in Somali children in Minneapolis with “age-matched controls.”

Even then, she adds, educational data may be incomplete or inaccurate. The 13 special education categories reported to the state and federal government are intended to help provide a child with the best available educational services. If a child has two conditions, such as autism and developmental delay, they can only be assigned to one primary category; Minnesota does not require a medical diagnosis of autism to be included in the category. Finally, some schools, especially those in poorer districts, often overlook mild forms of autism.

Population data used for the analysis also comes from the 2000 census, which may be vastly different than current numbers. “The population of Somalis is a fluid number in Minnesota,” says Punyko.

Mike Stanton also notes that “in Minnesota there is no reliable epidemiological data for autism”—because, as he points out, the “administrative data for children in receipt of autism services” is based on “teacher assessment,” with a diagnosis from a “trained clinician” not required.

I know this from experience: My son was first evaluated for “delays” in Minnesota, by a Child Study Team from the St. Paul Public Schools. That was in the spring of 1999 (he wasn’t 2 years old yet) and he immediately started to receive services (speech, OT, and special ed, only a few hours each week). He wasn’t actually diagnosed with autism until July of 1999 (and the only change in the services was that he qualified for more hours of special education, which we were urged to have him receive in a school setting, rather than at home—that classroom was not appropriate for Charlie—but this is another story, and a whole ‘nother post). Also (and this is completely anecdotal), a number of Somali families lived in a high-rise apartment that was right next to the building where Charlie’s pediatrician had his office, and there were many Somali mothers with strollers and young children waiting beside us among the little tables and fish tanks in the waiting room). (And, also really anecdotally, no Somali children in Charlie’s special ed program in St. Paul, back in the summer of 1999.)

One question that (following on today’s earlier DSM-V post) needs to be addressed is how cultural factors might be at work here. And Dr. Novella writes that

Somali parents certainly believe they are experiencing something new, and some pediatric neurologists in these areas have had their suspicions also. But this is not enough to form a scientific conclusion - only to justify further research.

The true autism rate in Somalia needs to be investigated also. We should not assume that because the culture does not recognize autism it does not exist.

Besides keeping in mind the particular conditions that a child is said to be “autistic” in Minnesota—again, a child can receive autism services through assessment by a teacher (as my son did) and without receiving an official diagnosis from a “trained clinician”—we need to get a better sense of how autism is understood in Somalia, and what the numbers there are, and how these are determined.

1st born child—-older mother—-older father: Such a child is three times more likely to develop autism than third- or later-born offspring of mothers who are 20–34 years and fathers who are less than 40 years old, according to a study published in the October 21st American Journal of Epidemilogy (full text can be accessed here and this is a PDF file; another summary at the Daily Telegraph). Researchers reached these conclusions after studying records for more than 253,347 children born in 1994 of whom 1,251 have autism.

Researchers note that there has been a decline in average family size in recent decades:

The results of this study raise the question of whether some portion of the recent rise in ASD prevalence may be linked to recent trends in parental age and family size. A further question is whether a modest increase in prevalence associated with advancing parental age and low birth order may have contributed to a greater awareness of ASD and, in turn, increases in measured prevalence. The tendency for older parents of firstborn children to have higher levels of educational achievement and resources than other parents could further contribute to increased awareness and an expansion of the diagnosis of ASD.

While it’s not clear how advanced parental age might contribute to increased risk for autism, the researchers note that the “probability or selection of [gene] mutations increases as men age”; in older mothers, “age-related chromosome changes, pregnancy complications, or environmental exposures during pregnancy” are possibilities. Also noted is the potential role of infertility treatments or assisted reproductive technologies,” the use of which has increased recently and among “women and men of advanced reproductive age,” and, too, the “psychopathology or behavioral traits of parents that may result in both delayed parenthood and genetic susceptibility to autism in offspring.” Two other studies that have found increased risk of autism in first-born children are cited.

Charlie is our first-born (and our only child). I was between 20–34 years old when he was born and Jim was less than 40 years old.

This is perhaps an example of medicine acting despite an absence of what we’d recognize as science, a case of peoples’ fears getting the better of them.

This statement was made in reference to a “well-respected senior scientist” issuing a warning about cell phones being linked to cancer, as discussed in Ars Technica today. Other examples of “medicine acting despite an absence of what we’d recognize as science” noted are “(unfounded) concerns over WiFi and vaccinations“—both of which have also been linked to autism—and the (now put on hold) federal study on the possible use of chelation therapy as a treatment for autism.

For worse or for better, outrage over Michael Savage’s remarks about autism–which exhibit an absence of what we’d recognize as any knowledge about autism—has drawn away attention from the topics that usually garner the most rage and contentiousness in discussions about autism. Some recent posts on the “absence of what we’d recognize as science” in claims of a link to vaccines or something in vaccines and autism:

Left Brain/Right Brain offers a transcript of Autism Omnibus testimony of Dr. Elizabeth Mumper, the President and CEO of the Rimland Center for Integrative Medicine, which clearly states its use of the Defeat Autism Now! protocol. In responding to questioning about lab test results for “neurofiliment antibodies and myelin basic protein antibodies,” Dr. Mumper did not seem completely aware that results from the lab that did the tests, Immunisciences, might not have been “accurate and reliable,” and that the lab did not (it seems) receive accreditation through the College of American Pathologists. — In other words, there is more than a little reason to question the reliability, and the accuracy, of the test results that supposedly make a case for vaccine-induced neurological damage in the children whose cases are being presented before the Autism Omnibus.

Over at the Neurologica blog, Dr. Steven Novella posts about (1) the nature of neurological diagnosis and why Hannah Poling has a “neurological disorder that is broader than just ASD” and that hers is a case of “atypical” autism; and (2) a resonse to David Kirby and Dr. Jon Poling about autism and vaccines. In the latter post, Dr. Novella says that Kirby and other “anti-vaccine/pro-vaccine safety advocates” have created a “false controversy”:

Kirby and the anti-vaccination crowd have created a false controversy over vaccines and autism. They then promote this controversy as if it were a legitimate scientific controversy. They then demand that their claims be investigated, that they are represented on the IACC, and they sue the government over alleged vaccine injury - and claim that the resultant controversy they manufactured is evidence for a legitimate scientific controversy and that they should therefore be taken seriously. There must be something to this controversy we manufactured because there’s a controversy - it’s nothing more than an elaborate and deceptive self-fulfilling prophesy.

Kirby is now using a strategy also familiar to the [Intelligent Design] crowd - say something scientifically outrageous, and then use the backlash of scientific outrage to say - well at least I got them talking about it and taking the controversy seriously. Mission accomplished. It’s just more self-fulfillment.

What is lacking in the case of ID and the anti-vaccination movement is an actual scientific controversy, or reliable scientific evidence to challenge the current consensus of opinion.

It’s a point that bears repeating—-the controversy over vaccines and autism is false.

Dr. Novella also notes Dr. Poling’s use of the “mommy gambit,” which is a sort of rhetorical sympathy-seeking strategy in which one says, hey, they’re just moms trying to do the right thing and help their kids, stop picking on them!. Dr. Novella cites Dr. Poling’s support of Jenny “Green Our Vaccines” McCarthy:

Heightened awareness is not always a positive thing, if it’s awareness of misinformation. What Jenny McCarthy has done is spread demonstrable misinformation (like the false claim that vaccines contain antifreeze) which has served to confuse the public. Unscientific propaganda distracts from real science and real solutions. Misinformed parents, hoping for answers, have been lured by false claims of the so-called “mercury militia” to risky and likely ineffective treatments, like chelation therapy. Hysteria over vaccines has lead to increasing numbers of parents choosing not to vaccinate their children - with resultant outbreaks of preventable diseases, like measles. This threatens herd immunity - which means that vulnerable populations, and even the vaccinated, are at increased risk (because vaccines are not 100% effective).

Dr. Poling is saying, essentially, that public misinformation, risky and ineffective treatments, false hope, and unnecessary outbreaks of preventable disease is all good - as long as it raises awareness.

He then tries to defend McCarthy, and criticize me, with the mommy gambit. This was tried before by RFK Jr. who tried to deflect skepticism towards the dubious claims of the mercury militia as an”attack on mothers” McCarthy’s status as a mom, even of a child who may have autism, does not exempt her opinions from scrutiny, and does not remove from her the obligation to use her celebrity status responsibly.

(I’ll note, too, that I’m a mom who finds the “mommy gambit” a dubious and even condescending enterprise.)

Last is a recent post by Epi Wonk on the 2007 DeSoto and Hitlan study, Blood Levels of Mercury Are Related to Diagnosis of Autism: A Reanalysis of an Important Data Set. EpiWonk responds to a response by Professor DeSoto about an earlier EpiWonk post on the study (did it give you a headache to read that? Could be much worse: EpiWonk has a migraine—full sympathies sent from here). The conclusion from EpiWonk also bears repeating: “‘We can conclude absolutely nothing about the association of ethylmercury [thimerosal] in vaccines to autism from these data.’”

Now imagine if Michael Savage were to say that 99% of what you hear about autism and vaccines and mercury is misinformation and over-stated and even simply false.