David Kirby

Posted November 14, 2008 | 05:17 PM (EST)




Minneapolis and the Somali Autism Riddle

http://www.huffingtonpost.com/david-..._b_143967.html

Tomorrow, a few hundred very concerned citizens of Minnesota will gather to discuss a baffling and heartbreaking riddle: Why is the reported rate of autism among children of Somali refugees so alarmingly high (now an estimated 1-in-28 schoolchildren)?
When I first heard about this phenomenon, which Somalis call the "Minnesota Disease," my reporter's instinct told me it could be a very big story; that a key piece of the puzzle that is autism might well lie within the bloodstreams of these poor children of the Twin Cities - whose families had already suffered through so much.
If it can be demonstrated that US-born children of Somali refugees are more prone to autism than the other kids of Minneapolis - or Somalia - then it shouldn't take too long to discover what it is about them (their genes) that clashed so terribly with the way they were conceived and raised (their environment).
It won't explain every case of autism, of course, but it might open new doors of understanding and knowledge that can be applied to combating autism worldwide.
The daylong conference on Saturday is a tribute to progressive public health and a responsive local government (plans include Somali translators, Somali food, breaks to allow time for Islamic prayer, and child care). The meeting is sponsored by a variety of Somali, autism and other community groups, as well as several State and City agencies, including the Minnesota Department of Health.
"The Somali community expressed a need for information on autism, and our duty is to respond to that, to provide as much information as possible, and in a culturally context," said state health department spokesman Doug Schultz. "The concern in the community is real, and if they have the perception that there is a high rate, then we need to talk about that."
But is there really a "high rate?" A written survey I conducted with some 25 refugee parents of autistic children certainly revealed their strong belief that there is - and nearly all of them blame the vaccine program of their adoptive country.
In August, the online newspaper MinnPost first reported that 12 percent of kindergarten and pre-school children with autism in Minneapolis speak Somali at home, and more than 17 percent of the kids in the early childhood autism program are Somali speaking.
The Minneapolis Star tribune published other staggering figures: Among Somali students in the district, 3.6 percent had autism - a rate of 360-per-10,000, (or 1 in 28). The paper said this was about twice as high as the already burgeoning district average of some 180-per-100,000 kids (or 1 in 56), and more than five times the national rate of 66-per-10,000 (1 in 150).
Virtually all of the children of Somali refugees were born in the United States, and they appear to be among the most severely affected children with autism in the district: Last year, one-in-four children in the preschool class for the most severe cases was Somali.
Reports of elevated autism rates among children of immigrants is nothing new. A small study this year showed that Swedish-born children of Somali immigrants to that country were far more likely to have autism than the general population, (Somalis there call autism the "Swedish Disease"), and another small study in 1995 found an autism rate of 15% among children in one Swedish town born to mothers from Uganda - 200 times more than the national average.
Higher than normal autism rates among children of immigrants have also been reported in Ireland, the UK and several cities in North America, especially Montreal.
Meanwhile, none of the refugees that I surveyed had ever heard of autism back in Somalia, where there isn't even a name for the disorder. In fact, no one had ever seen nor heard of a single child who displayed any of the common symptoms of autism -- though a few did report knowing kids with speech delay that eventually resolved itself.
Not everyone is convinced that there is a problem, however.
"These reports are interesting and need further review, but you don't just take something off the news as facts," cautioned Judy Punyko, an epidemiologist for the state department of health. "We need to obtain the actual data and analyze it, so I am not sure there is much of a story here at this point."
Punyko has assembled a team of experts to determine if the Somali autism rates are in fact higher than average in Minneapolis, and she was expected to release at least preliminary results at Saturday's meeting.
But on November 12, Dr. Punyko sent me an email saying she is not able to present any results yet, "only study aim, objectives, and progress to date. I am still in the process of gathering existing data and this is taking a lot more time than I had anticipated," she wrote. "These data are tough to work with."
The delay will not be welcome news to any of the Somali parents I spoke with. They know that, without proof that their children are being afflicted more than others, officials will not intervene to investigate.
One mother (who asked not to be identified due to the tremendous stigma of autism among Somalis), first approached state and city officials in April of 2007, beseeching them to look into the apparent problem. It wasn't until local reporters started snooping around, the mother said, that government stepped up to respond.
The parent refugee-activists even secured a teleconference meeting with health staffers in the DC office of Minnesota Senator Norm Coleman. They told the Somalis that, if the prevalence was shown to be higher in their community, they would urge the CDC and other Federal agencies to "look under every rock" to find out why - including environmental factors like mercury, thimerosal and vaccines.
Many Somali parents began to suspect vaccines as a possible cause on their own, and well before they encountered any American media or autism groups who could put the idea in their head.
In fact, one of the most obvious "environmental" differences between Minnesota and Somalia is mass vaccination (another is sunlight, but more on that later).
There are an estimated 15,000-40,000 Somalis living in Minnesota, which has the largest Somali population outside of East Africa. Most fled during or after the 1993 phase of the bloody Civil War in that country. Most spent years in often wretched refugee camps in Kenya and elsewhere, waiting for a chance to emigrate to Europe and North America.
Many got their chance in 2000, when the majority of Somalis arrived in Minneapolis, hoping to finally build a new life in peace and dignity.
Along the way, vaccines became an almost routine part of their life: They were given in the camps, they were given before leaving Africa, and they were given in the first year of arrival in the US (which requires a series of 10 vaccinations for all refugees, including women of child bearing age - many of those vaccines contain thimerosal).
Once they arrived in Minnesota, most refugees were welcomed by a progressive "Blue" state with a good public health infrastructure and a bureaucracy ready and willing to help. Refugees were given about a year or so of free medical and dental care, and special effort was made to ensure full compliance with the childhood vaccine schedule (though many mothers failed to keep well-baby visits, requiring lots of "catch up" vaccinations when they did bring their children in to the pediatrician).
Of the 25 refugee mothers who answered the questionnaire, most were vaccinated in refugee camps, and all but two were fully vaccinated after arriving in the US. About a third reported receiving vaccines while pregnant or shortly before becoming pregnant.
When asked what they thought was causing autism in their community, 22 respondents said that vaccines were at least partly to blame, while two were unsure, and only one said vaccines were uninvolved.
Many parents told me the same story of regression I have heard a thousand times before.
"He met all the normal milestones until he hit 18 months," lamented Abdulkadir Khalif, speaking of his three-year-old son with autism. "He was a beautiful baby, running around, saying a few words, until about the winter of 2006, right when he got his MMR (measles-mumps-rubella) shot. He got sick and we went to the hospital, and he stopped talking immediately around that time."
"Do I know it was the vaccines?" Khalif asks. "All I know is he stopped talking right around the time of those shots."
Neither Khalif nor his wife (who was given a thimerosal-containing flu shot while pregnant, even though the label instructed the doctor to administer the shot during pregnancy, "only when medically necessary"), had ever heard of autism until the day their son was diagnosed.
Khalif says, it is "not possible" that autism could be this common in Somalia. "I've been living with it on a daily basis, with my own child. And I lived in Somalia and Kenya for a long time. If it was this common, we would have had a name for it, and we don't. That tells me it does not exist."

Continued next post...
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http://www.autism.com/treatable/form34qr.htm

Parent ratings of interventions for Aspergers
http://www.autism.com/treatable/form...ersyndrome.htm