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.