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.

Why is the rate of autism in Somali children in Minnesota so high?

A few weeks ago, the Minnesota Post addressed this question. The August 24th Star-Tribune also reported on this “cluster of affected kids”; state and federal officials are investigating.

In Minneapolis, fears have been fueled by some puzzling statistics. Last year, Somali children made up just under 6 percent of the school population, but 17 percent of those in the early childhood autism programs (14 of 81 children). The numbers have been creeping up for several years, especially among young children.

“People are worried,” said Saeed Fahia, who heads a Somali community group. “Nobody remembers any autistic children in Somalia. I’m sure there must have been some, but there were not that many.”

The Star-Tribune also notes the “cultural stigma” of autism in Somail culture. One Somali-born women was “so alarmed by the number of Somali children in her son’s autism class that she started calling politicians, news organizations and state officials to call attention to the issue,” but still kept her son’s being autistic a “secret from relatives.”

“Not only is it high among us here, but we Somalis don’t accept this disorder,” said the woman, who asked not to be identified.

Before rushing to suspect “something about America” (or something in the lake water) as linked to autism, consider: A commenter who’s an autism researcher, lives in Minnesota, and is autistic made a number of observations about the rate of autism among Somali children; he notes that, according to the WHO, there are officially 16,000 cases of autism in Somalia (a rate of 1 in 2000), but no full-scale study has been conducted. It’s also of interest to consider a 2003 study by Gurney, et al., on Analysis of Prevalence Trends of Autism Spectrum Disorder in Minnesota .

Couple of weeks ago the Minnesota Post did an article on rates of autism in Somali children in Minneapolis, with the suggestion that “something” about being in the US was causing higher rates of autism. Today’s Raleigh News-Observer also reports on autism in the children of recent immigrants to the US, but with an emphasis on the additional difficulties of getting services for a disabled child when you’re new to a country, a culture, a language. It’s pointed out that the more “open-minded mentality” here can lead to immigrant parents to seek a diagnosis, services, and education for their children:

Esmeralda Garcia feels more supported and informed about autism in Charlotte than she ever felt in her native Mexico. When her 6-year-old daughter, Marianea, was diagnosed four years ago in Garcia’s hometown of San Luis Potosi, Garcia, 30, had never heard of autism.

After a year of treatments, Marianea hadn’t improved. Garcia decided to move back to Charlotte, where she had emigrated with her husband some years before, so Marianea could get better health care.

Garcia saw an ad for Boujlil’s group in a Spanish-language newspaper and called Boujlil, who took her to the doctor and later helped enroll Marianea in school.

My grandparents on both sides immigrated to the US from southern China at the beginning of the 20th century. None of their children had disabilities, but if they had, or if any of the families in the immigrant Chinese community had disabilities, it was not talked about and there were certainly no services, not at all. The Raleigh News-Observer highlights the work of a group, the World Alliance for Families and Children, which was founded by Mariame Boujlil, a native of Morocco who now lives in Charlotte and whose now 5-year-old son Zachary is autistic. The World Alliance for Families and Children helps families to navigate the US health care system, get diagnoses, figure out treatments, and also runs a summer school: Important work that makes a real difference.

Today’s MinnPost.com reports that “First generation U.S.-born Somali-speaking children in Minneapolis schools are disproportionately identified as having autism.” There are 15,000 to 40,000 Somalis living in Minnesota, a 2001 state health department study reports. 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.

Anne Harrington, early childhood special education coordinator for the Minneapolis district, notes that it’s the “‘more severe forms of autism that we’re seeing in our Somali babies that are born here,’” and that more than a few families have two autistic children. She also notes that the Somali community is struggling to find health services and understand autism.

According to Huda Farah, a Somali advocate who collaborates with the health department and trains childcare providers who work with autistic Somali children, language barriers and a lack of understanding of the complex U.S. medical system are key reasons why many Somali parents don’t seek medical help for their autistic children.

Cultural barriers also impede: Unlike in the United States, children in Somalia aren’t taken to a doctor for developmental disorders.

It’s precisely the cultural issues—the understanding of autism in Somali culture and in Somalis who now reside in the US—that the MinnPost.com article needs to further address. A July 15th article in The Local, a Swedish newspaper written in English, is cited as describing “that country’s Somali population and its high prevalence of autism.” The Local article, though, is actually about a theory about a lack of vitamin D causing autism. Neither article considers how autism is understood, identified, or diagnosed in Somalia; both immediately invoke theories of environmental causes, leading David Kirby to make a number of speculations about autism in the children of immigrants to the US:

It would be very interesting, I believe, to look at autism rates in high and low immigration states. Not to implicate vaccines, but to find out if children of immigrants are more at risk than our native born population — and why.

And one suspects that his “and why” is not going to rush to take into account the numerous socio-cultural, economic, legal, language and other obstacles that immigrants face.

We were living in St. Paul when my son was diagnosed. I’m third-generation Chinese American, overly educated and a professor of Latin and Greek, all duly noted on the forms I filled out for the school district who evaluated Charlie. One of the first questions the Child Study Team asked:

“Is English the primary language spoken in the house?”

I really think of this piece as a love story between a husband and wife, between a mother and a son and between a father and a son.”

Says playwright Stacey Dinner-Levin of her play, Autistic License, which will be performed April 25 and 26 at the Illusion Theater in Minneapolis. More from Dinner-Levin (who has an autistic child) about her inspiration for writing Autistic License:

“This play is based upon our experience of raising a child with autism - the things that happened in our family that were tragic, surreal and funny. This is the kind of stuff you can’t make up! Nobody sees what goes on in families with a child living with a disability. To me theater was the perfect vehicle to tell this story and to give voice to all families living with disability. I really wanted to open the doors, take down the walls of our house and say, ‘Come in, take a good look, and see this for what it is: the struggle of my life, along with the beauty and the joy.’”

The play offers a glimpse of what it is like to raise a child “in a world that has far too many opinions on what is ‘normal.’” Michael Paul Levin, the playwright’s husband, plays the role of the autistic son.

Dinner-Levin’s comment about the play as about a couple of “love stories”—between father and son, mother and son, and between husband and wife: This rings home most of all with me. Even on the toughest, darkest gray days it’s love and sticking together that sustain.