A mysterious connection: autism and Minneapolis’ Somali children

REUTERS/Khaled Abdullah Ali Al Mahdi

Short yellow school buses deliver children with special education needs to Minneapolis public schools every weekday morning. As students arrive at the elementary school where I work part time, I can’t help but notice something about the autistic kids as they climb down the buses’ steep steps: Almost all are Somali children.

Autism is a developmental disorder that doesn’t discriminate against race or class, and it is on the rise in the United States. But in Minneapolis, the mysterious disorder appears to be zeroing in on one of the city’s newest communities: First generation U.S.-born Somali-speaking children in Minneapolis schools are disproportionately identified as having autism.

“We’re definitely seeing it, and something is triggering it,” said Dr. Chris Bentley, director of Fraser, a nonprofit in Minneapolis that assists autistic children and their families.

Bentley is helping organize an unusual forum next month to discuss the issue. Members of the Somali community, autism advocates and officials at the state departments of health, education and human services have been invited to attend.
“This is something we’re looking at first in Minneapolis and then in St. Paul, but this is a much bigger issue than that,” she said, suggesting that studying what’s going on in the Somali community in Minneapolis may provide clues to understanding the causes of autism.

No conclusive research
It’s not clear what’s going on in other communities — such as St. Paul and Rochester, Minn. — with large numbers of Somali children because data there are less complete or unavailable.

And metro-area pediatricians couldn’t confirm that there is higher incidence of autism among Somali children in the Twin Cities, noting that there’s been little research on the question.

But, said Dr. Stacene Maroushek of Hennepin County Medical Center’s pediatric clinic, “the impression that there’s an increasing rate of autism in the Somali community is definitely there. And people are wondering what’s going on.”

Maroushek said that while there is a need for more medical research on immigrants and refugees, there is no conclusive medical data showing disproportionate numbers of Somali children with autism in Minneapolis.

The Minnesota Department of Health is scrambling to put together a “pre-pilot program” to assess autism in the general population. It has not developed a plan to assess numbers of immigrant children with autism, in part because of laws restricting access to school data.

In the meantime, there is concern in Minneapolis public schools.

The Minnesota Health Department estimates 1 percent of Minnesota’s children have autism. But the Minnesota Department of Education said that 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.

About a quarter of all autism children who attend autism classrooms for students functioning too low to be mainstreamed in regular schoolrooms are Somali. Special education specialists said that indicates that the degree of autism Somali children are developing is on the severe end of the autism spectrum.

“I’m not seeing Aspergers syndrome and the full spectrum of autism in Somali children. It is the more classic forms of autism in general; it is the more severe forms of autism that we’re seeing in our Somali babies that are born here,” said Anne Harrington, early childhood special education coordinator for the Minneapolis district and a specialist on the topic.

“If they’re having more children, many of the siblings also have autism. We have a number of [Somali] families who have two children on the autism spectrum and sometimes more. I’ve been working to get somebody to look at this and pay attention because it feels like this is too specific [to Somalis]. It’s got to be preventable,” Harrington said.

She said she knows of an apartment building with Somali residents in which almost every family has at least one autistic child.

A huge issue
Harrington said the Somali community is struggling to understand and recognize autism. She said that among Somali families there has been a lot of shame and confusion associated with having an autistic child. But that’s changing. “They’re beginning to be aware that this is a huge issue in their community, and they’re starting to come together and not isolate themselves,” she said.

According to a 2001 state health department study, there are an estimated 15,000 to 40,000 Somalis living in Minnesota, the biggest Somali population outside of East Africa. The state estimates that 67 percent of refugees who arrived in 2000, when Minnesota saw the biggest surge of Somali refugees, settled in Hennepin County. And nearly a third of all students who speak Somali at home in Minnesota attend Minneapolis public schools.

Harrington suggested that differences in the genetic make-up of Africans put them more at risk for developing autism than other immigrant groups, and noted that refugee women and children must undergo numerous immunizations.

(According to school data, the percentage of Hmong children and Latino children in Minneapolis public schools with autism is not as high as Somali children with autism.)

Harrington raised issues that are part of a long-standing debate over whether immunizations are linked to autism.

“They’re given more [vaccines] then we get, and sometimes they’re doubled up,” Harrington said. “Then their children are given immunizations. In Somalia, their generations have not received these immunizations, and then suddenly they’re getting just a wallop of them in the moms and then in the babies. That’s certainly a concern that’s been expressed to me by the Somali population.”

The Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices recommends that refugee adults receive at least 10 vaccines.

But numerous studies have failed to prove any connection with symptoms of autism in children and vaccines.

“Research has not shown it’s related to shots or toxins —  kids who haven’t received immunizations have the same baseline [for autism] as those who have,” said HCMC’s Maroushek.

Study in Sweden

There are some studies, however, that link autism and ancestry.

A Swedish newspaper published an article last week about that country’s Somali population and its high prevalence of autism. The story described a autism study that focused on Somalis. Doctors hypothesized that the high rates of autism in Somali children born in Sweden is due to the lower levels of sunlight and vitamin D immigrants get in Sweden compared with Somalia, a country near the equator. Dark skin that’s covered up and a diet that doesn’t include fatty fish limits absorption of vitamin D as well, according to the doctors.

And the journal Science published a study last week that linked shared ancestry to autism. (The study was also described in the Times of London.)  A Harvard team funded by the National Institute of Mental Health studied Middle Eastern families in which cousins had married each other. In five of those cases, children showed genetic defects linked to autism. Many Muslim Somalis marry their first, second or third cousins, putting them a category suspected to be more at risk.

Struggle to find care

While experts are baffled by the causes of autism in U.S.-born Somali children, autism advocates say that the problem is compounded because Somali families struggle to find health services.

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.

Because Somali parents aren’t seeking medical help for their autistic children, it’s usually teachers who identify and track autism among those children, according to the Autism Society of America. Schools, however, do not make a formal autism diagnosis, but rather look to see if a child meets educational criteria to be placed in autism programs. Nor do Minneapolis schools refer children with autism to medical doctors.

Elizabeth Gorman is a freelance journalist in Minneapolis. She also works at Minneapolis Public Schools as a Spanish bilingual educator.

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Comments (15)

  1. Submitted by Pam Carlson on 07/24/2008 - 11:48 am.

    Excellent comprehensive story! Your readers might also be interested in knowing about Xurnimo, Arc Greater Twin Cities’ parent networking group for Somali families. Parents of children with autism and all other types of intellectual and developmental disabilities are welcome at this free support group.

    Xurnimo meets the first Wednesday of each month, 6-8 pm at African Community Services, 1305 E. 24st St., Minneapolis. For more information contact Zahra Omar, Arc Greater Twin Cities, 952-920-0855.

  2. Submitted by Tim Kasemodel on 07/24/2008 - 11:55 am.

    HCMC’s Dr. Maroushek says “numerous studies have failed to prove any connection with symptoms of autism in children and vaccines.” Important to note that the stuies she is referring to are outdated and now considered useless, even by Dr. Julie Gerberding, director of the CDC.

    Many others in this debate are not so easily convinced and are willing to look at the newest research. Since the beginning of the year, we have heard from:

    1) Three United States Senators
    2) The next President (and possibly Vice President) of the country
    3) The Director of the CDC (and her “open mind”)
    4) The former head of the NIH and the American Red Cross
    5) The Chairman of a House Science Subcommittee on Investigations and Oversight
    6) A respected Pediatric Neurologist and Resident at Johns Hopkins University Medical School (Dr. Jon Poling)
    7) The HHS Vaccine Safety Working Group
    8) The CDC’s Vaccine Safety Research Agenda authors
    9) Medical personnel at the HHS Vaccine Injury Compensation Program
    10) The Strategic Planning Workgroup of the Interagency Autism Coordinating Committee
    11) The Clinical Immunization Safety Assessment Network
    12) Leading autism researchers at Johns Hopkins University Medical School
    13) America’s health insurance companies

    Virtually all of the above advocate, or have at least considered, exploring the possible links between vaccines and autism.

    Maybe Dr. Maroushek could contact them for information not tainted with the bias of the CDC.

    Special thanks to David Kirby for the above list:

  3. Submitted by Kassie Church on 07/24/2008 - 10:26 am.

    Excellent story. I hope it moves the Health Department and others to treat this seriously, though somehow I doubt it will.

  4. Submitted by Bernice Vetsch on 07/24/2008 - 11:47 am.

    Would an experimental program of Vitamin D and fish oil dietary supplements for very young Somali children be worth trying?

  5. Submitted by Nancy Hokkanen on 07/24/2008 - 02:48 pm.

    Those Somali children need testing and treatment for vaccine injuries, which are routinely ignored or denied by the Minnesota Department of Health and the U.S. Centers for Disease Control. These agencies know how to market shots, but offer no protocol for addressing doctors’ and parents’ reports to VAERS, the Vaccine Adverse Events Reporting System. Strange that few have noticed this inexcuseable void.

    How utterly unscientific to pretend that vaccine injuries aren’t happening. Learning opportunities are lost, mediocre or unsafe products stay status quo, and people are unnecessarily being injured or even killed. Meanwhile the mainstream media parrots CDC bullet points on discredited epidemiology rather than investigating children’s lab tests, emerging research such as for mitochondrial dysfunction, and FOIA documents uncovered by persistent parents. Not to mention the Omnibus Autism Proceedings in the U.S. Court of Federal Claims, aka “Vaccine Court” going for six years and still running.

    In Minnesota we have children with vaccine-strain measles in their gastrointestinal tracts, children with toxic body burdens of mercury from Thimerosal injected into them, children with immune systems gone awry immediately after receiving multiple vaccinations. This spring I met a man who suffered encephalopathy after his measles shot in the early 1970s. Sadly, history repeats itself, but exponentially.

    As the parent of a vaccine-injured “autistic” child, I feel sympathy for the Somali families with whom he used to attend school in Minneapolis. Even without the language barrier, it’s been nearly impossible to convince public health administrators that a product intended to improve health is having the opposite effect for some children. Too many in the helping professions and elsewhere are willing to write off these sick kids as collateral damage in the war on disease.

    Hope for these children’s physical and mental recovery lies in research from a new wave of neurologists, immunologists, toxicologists, chemists and physicians such as the DAN! doctors from the Autism Research Institute in California. And in parent advocacy groups that promote biomedical treatments — TACA (Talk About Curing Autism), Generation Rescue and the National Autism Association.

  6. Submitted by Gail O'Hare on 07/24/2008 - 05:57 pm.

    I’m sincerely troubled by this information and feel empathy for all the parents and children dealing with autism. But I can’t help asking some questions – since Somali women wear traditional garb at home as well as in Sweden, why should there be a difference in absorption of Vitamin D? Just how large were the shared ancestry studies, how were the participants identified and were the 5 cases a significant percentage? What controls were used to ensure against ethnic/cultural bias? It seems odd that research is being devoted to non-Europeans when we don’t know if there is a pattern of higher incidence among immigrant African or Middle Eastern children.

    Most important, if Somali kids in Minneapolis are diagnosed as autistic by teachers and aren’t seen by medical professionals, how do we know they even have autism? I truly don’t want to sound argumentative, but this article raises what seem like scattered theories and unverified incidences of the disease and related factors. How are teachers trained to identify autism?

    //The Minnesota Health Department estimates 1 percent of Minnesota’s children have autism. But the Minnesota Department of Education said that 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.//

    The problem is serious and research is essential, but I’m wary of chasing theories based on non-medical diagnosis. I’m wondering if we’ll see an epidemic of autism as we did of ADHD. These are serious conditions, and we shouldn’t be rushing to label kids without sound evidence.

  7. Submitted by Tim Kasemodel on 07/24/2008 - 07:36 pm.


    By your comments it would seem you do not have an autistic child.

    You write that you are “wary of chasing theories based on non-medical diagnosis”. It is important from the getgo that you understand there is NO medical diagnosis for autism at this time.

    Autism is a description of behavior – if a child exhibits a minimum number of criteria on the DMS-IV checklist, they are autistic. In Minnesota, a medical degree is not necessary to initiate autism services in the public schools. Thank God for that – this is because there are so many autistic kids that the so-called “medical diagnosis” requires getting on a waiting list to see the Doc. This is too long – kids need services now. It does not take a rocket scientist to determine a child has autism – you give way too much credit to the letters behind a person’s name.

    If you look at the individual birth cohort data within the Dept. of Education, you will find that the kids now ages 8 to 11 are recieving autism services in Minnesota at a rate of 1 in 75 overall. This is twice the quoted rate of 1 in 150.

    But don’t ask the the Dept of Health or the Dept of Ed for this info, they do not publish it. Worse yet, there are over 8000 kids that will become adults in the next 8 years and there is no effort to determine how many of them are severe, requiring extensive care and support, and those with Aspergers or higher functioning autism who may actually be able to get a job, again, with suport.

    As important as it will be to prepare for this, sadly, no one believes we need to, because the Dept of Health and the Mayo Clinic have spent the last 10 years telling people there is no concern – autistic people have been at this rate (1 in 45 men – confirmed by a Mayo Rep last October at the House Health Policy Committee hearing on autism) all along, just undiagnosed and living among us.

    Yah, You betcha!

    Maybe the shocking Somali rate will give autism the attention it really deserves in Minnesota.

  8. Submitted by Lin Smith on 07/25/2008 - 12:11 am.

    What a shame! It sure seems to me that these people were taken advantage of. Like, they were unaware of the risks they were forced into with blasting their children with vaccinations. This is so disturbing. If I were to ever have known about the risks, I would have never allowed my son to be vaccine injured, I believe they feel the same. My sympathies go out the all of the Somali’s affected with this!

  9. Submitted by Craig Brooks on 07/29/2008 - 11:17 am.

    It has become way too easy to lable a kid with autism and its related diagnois. Even minor things can result in this lable now. This lable and other mental health labeles are assigned to minority children way out of proportion to the real inscidence of mental health problems. What happens is behavior problems among minority and poor children get labeled so mainstream class room teachers can ship the kid to special education. They often have difficulty communicating with the parents and rahter than learning how to do so, it is easier to ship the kid while also blaming the parent.

  10. Submitted by Caroline Rodgers on 07/25/2008 - 05:58 pm.

    While the vaccine controversy continues to draw a great deal of attention, despite large studies throughout the world indicating that vaccines do not cause austism, another possible cause of autism has been almost entirely ignored.

    Yale studies prove that prenatal ultrasound results in disruptions in neuronal migration — the very “wiring” of the brain — in mice. Studies involving primates showed that prenatal ultrasound changed brain formation so clearly, scientists could actually determine when the subject had been subjected to ultrasound by examining the position of neurons in the brain.

    While virtually the entire medical community and the women who trust them believe that prenatal ultrasound is both safe and non-invasive, neither may be the case. Ultrasound has a number of known bioeffects, not all of which are clearly understood. However, one consequence of exposing embryos or fetuses to ultrasound is changing the temperature of tissue during critical points of development, because sound waves — even those that are not audible to us — transform into heat when they are absorbed by tissue.

    The role heat plays in disrupting fetal development is not well known, but it is a fact that pregnant women who use hot tubs are at risk of having children with neurological problems. It is interesting that in a 2007 study of autistic children’s behavior during fevers of 101 degrees, 80 percent of the children exhibited fewer autistic symptoms during their fevers, which suggests that their chemical receptors work better at elevated temperatures. Could exposure to the thermal effects of prenatal ultrasound affect the fetus’s chemical receptors for life? Possibly.

    In the case of vaccines, if prenatal ultrasound damaged heat-shock proteins, which are present in every cell to protect them from disastrous consequences due to heat, could it be that prenatal ultrasound somehow altered or damaged the fetus’s heat-shock proteins, so that when the child experienced his or her first fever, it set off a cascade of damaging events in his or her brain?

    Some readers have no doubt followed the case of Hannah Poling, a child whose autism is believed to stem from an underlying mitochondrial disorder. A 30-year-old study found that ultrasound could damage mitochondria, sometimes beyond its ability to repair itself.

    For those who think the benefits of prenatal ultrasound outweigh any possible risks, please be advised that no studies prove this. In fact, a large study involving more than 15,000 women that was intended to prove the benefits of prenatal ultrasound concluded that even in the case of major birth anomalies and multiple gestations, prenatal ultrasound did not improve outcomes for mother or child.

    For more information on the possible link to prenatal ultrasound and autism, please read my article at: midwiferytoday.com/articles/ultrasoundrodgers.asp If anyone wants sources to the above information, post your request and I will be glad to supply them.

  11. Submitted by Gideon Bauman on 07/25/2008 - 09:40 pm.

    to Elizabeth Gorman or whoever is doing the research about Autism in Somali kids : just an idea…
    there is a very large population of Somalis in ISRAEL.
    there situation seems to be very similar to the Minneapolis Somali population.
    maybe its a good source of information for comparing with what’s going on in Minneapolis.
    hope this might help.

  12. Submitted by Anne Smith on 07/31/2008 - 08:56 am.

    I would be curious if Somali parents had access to sonograms. That would help with answers to the one theory.
    Another thought about the damage over-heating can cause could be due to one of the symptoms of autism which is a flawed ability to detox. When the natural detox takes place our bodies naturally heat up to rid waste and then cool off by sweating and again ridding our bodies of waste. This system being flawed in vaccine-injured children could easily be the cause of over-heating resulting in injury (theoretically (sp?) ofcourse).

  13. Submitted by Karen Sandness on 08/07/2008 - 09:43 pm.

    Here are some questions we need to look at:

    1. What is the incidence of severe autism among Somali children in other states? In Somalia? In the refugee camps in Kenya?

    2. Is this condition familiar in Somali culture, or did it suddenly spring up when they moved to the U.S.?

    3. Do Somali refugees receive more vaccines than Hmong refugees or refugees from other countries? What is the incidence of autism among the large population of Hmong schoolchildren in St. Paul?

    4. What are the results of administering high doses of Vitamin D to Somali children in Scandinavia?

  14. Submitted by Nicole Olson on 04/24/2009 - 11:58 pm.

    I work with Somali families in the Minnesota Family Investment Program and have Somali colleagues. They point to another possible cause for the high level of autism diagnoses in their community and don’t necessarily believe that these diagnoses are correct. Many Somali families who receive child care assistance from the state choose family and friends as their child care providers instead of utilizing school readiness programs in licensed facilities. This results in Somali children being developmentally behind other children of their age when they begin school. They don’t know English and have not participated in developmentally appropriate activities, so naturally, they are already very behind their classmates, and many end up in special education classes. I’m sad to say there is another side to this issue – Somali families are seeking autism diagnoses for their children because of the Social Security benefits they result in. These benefits are desirable because they are more lucrative than welfare grants for these children. Of course, we must not generalize this to all Somalis, but it is becoming an increasing problem in this community.

  15. Submitted by John Scatchard on 07/31/2011 - 04:29 pm.

    Autism and schizophrenia are both associated with similar groups of mutations that can either be expressed or not expressed. The DNA that a person is born with doesn’t change, but certain small molecules in the body control whether the small genes in the very long strand of DNA ever get made into proteins or not. Methylation, acetylation, ubiquination and other epigenetic protein controlling molecular bonding tricks determine which of the mutated and normal genes are expressed. What the one carbon methyl or two carbon acetyl and other small molecules do is to stick to the edges of the long strand of DNA and prevent floating strands of RNA, that make the proteins, to move in close enough to read the gene sequences. If RNA and transport proteins can’t touch the inherited DNA, they can’t put together the thousands of essential animal proteins needed for good health. If the mutated genes are fully methylated or blocked by some other small molecule, they don’t become expressed. It’s best if gene mutations don’t express. In the case of tumor supressor genes, they should be fully demethylated and exposed, so the transport molecules and RNA will fit in to read the DNA. Then, the tumor suppressor genes will be able to express. How the body figures out how to control all these metabolic chain reactions is the great mystery.
    In the case of increased prevalence of autism in the Somali community, it is probably related to the genetic sequences that each child is born with. The similarity between the American and Swedish Somali populations highly suggests that genetic factors are at work. The epigenetic factors can be influenced by nutrition, stress and environmental toxins, which might include vaccinations. The first place to look for the underlying problem is at the genetic factors. The second place to look is at the epigenetic factors that determine which of the genetic factors will be expressed.
    People who appear normal also have gene mutations, but all animals have secondary, somewhat redundant metabolic systems that cover for mutations. In a child with autism, there are not enough healthy metabolic systems and there are too many mutated systems. The result is poor digestion, nervous system development and dysregulated immune function. These conditions are made worse by pathogenic gut microbes, such as toxin producing Candida species and Helicobacter pylori. These and every toxin add to the oxidative stress that already results from the original mutations. With this vicious cycle going on, the brain cannot develop to its full potential. If there are negative epigenetic or environmental factors happening, they make the whole situation worse. If, through optimal diet and elimination of toxicity etc., the epigenetic influence is improved to support proper methylation, acetylation etc., the situation can be improved. Causes of autism start before conception.
    Point A; how does one evaluate genetic factors? And if that is done, is it possible to notice disease patterns in Somali genetics, and to heal them with new protocols?
    A system has already been worked out. A lady by the name of Dr. Amy Yasko, from Maine, has a system called Nutrigenomics. She charges a fair price for a series of genetic, blood and urinary tests to evaluate genetic and metabolic conditions that are the most common. Upon knowing what metabolites and genes are present, she recommends dietary and other regimens, which experience has shown to be successful. In comments that appear on the CH3Nutrigenomics blog section of her holistichealth.com website, many real-life situations are portrayed. In the section called The Basics, is the theory behind her work. Of course, her system isn’t perfect, but it’s a miraculous beginning that incorporates a very solid genetic database.
    In the case of a mostly low income, immigrant society, it might work out such that a modest number of children and parents can be genetically analyzed. It might be safe to assume Somali genetics are similar throughout the community, and that the therapeutic techniques can be shared among the others. Trying new foods infrequently and keeping good dietary records can help educate the main part of the group that is limited to trial, error and record keeping.
    Another aspect of the autism situation is that digestive, immune and nervous functions are affected, so chronic, slow-growing pathogens may set in. Trevor Marshall has addressed this problem. His eloquent sidekick, Amy Proal put out an astounding free article in 2006 called Understanding Biofilms. In it, she describes how pathogens, and good microbes as well, produce slimy patches of biofilm to establish tenacious colonies and evade the immune system. Trevor Marshall has a protocol using pulsed, low doses of antibiotics to eradicate such stealthy pathogens. Readers might take a look at the positive, genius sides of these authors and develop techniques that use the best that is available.

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