The nameless (in Soomaali) disease

[Miskiin-Macruuf-Aqiyaar]

A mysterious connection: autism and Minneapolis' Somali children

 

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.

 

Xigasho

[Miskiin-Macruuf-Aqiyaar]

Swedish doctors urge action over autism-sunlight link

 

Doctors in Sweden caution that vitamin D deficiency caused by a lack of sunlight could explain the country's increased incidence of autism.

 

The lack of sunlight in Sweden, combined with the use of sun protection creams and general precautions taken to avoid direct sun exposure is known to cause vitamin D deficiencies. Vitamin D deficiencies could be a contributing factor to the incidence of depression and some experts believe, autism.

 

Somalis living in Sweden have dubbed autism, "The Swedish disease," as it has become an increasingly common occurrence among Somali children that have moved to Sweden.

 

The incidence is far higher than for Somali children resident in Somalia, something which researches theorize may be related to differences in the amount of sunlight between Sweden and the east African country.

 

"Dark-skinned people demand significantly more sunlight to enable vitamin D to build up in their skin. The combination of clothing which covers the body and dark skin is a particularly problematic combination, especially for someone that doesn't eat fatty fish," write senior doctors Susanne Bejerot and Mats Humble in an opinion article published in the Dagens Nyheter newspaper.

 

The pair argue that a massive information campaign is needed in Sweden in order to highlight the risks of vitamin D deficiency - which affects half of Sweden's population.

 

In looking for explanations as to why autism in more prevalent among Somali children living in Sweden, Bejerot and Humble suggest that research should focus on the different environmental factors between Sweden and Somalia and also the factors between different immigrant groups living in Sweden.

 

"One factor could be just sunlight and the effect of sunlight. At our northern latitudes we are only exposed to sufficient sunlight to build up our vitamin D for a few short summer months which explains that around half of the Swedish population suffers from a vitamin D deficiency."

 

The western world has seen a dramatic increase in autism in recent years and Sweden has followed this trend. Around 1 percent of the Swedish population suffers from this neurological condition. In the US, the diagnosis of autism is increasing at a rate of 10-17 percent per year.

 

Researchers are struggling to explain the dramatic increase. Some focus on the incidence of mercury in vaccines or the the MMR triple vaccine given to young children. Others blame the sedentary habits of western children and modern food habits.

 

Another explanation may be that changes to how the condition is diagnosed lie behind the dramatic increase. Regardless, a more complex picture of the combination of genetic, environmental and social factors behind the condition is starting to emerge.

 

The doctors regret that it will take time for research to show the link between the illness and levels of vitamin D in Sweden's population which would support their contention that a general vitamin D supplement is needed.

 

"With current knowledge we can not rule out that Vitamin D deficiency is a strong factor behind the so-called autism epidemic. The connection can be researched scientifically but will take several years."

 

The National Board of Health and Welfare (Socialstyrelsen) has not issued any recommendations for how the widespread incidence of vitamin D deficiency should be treated and are unlikely to do so before 2012.

 

Bejerot and Humble explain that vitamin D is completely harmless in controlled doses and wonder therefore why the board is dragging its heels before developing "culturally sensitive" guidelines on the issue

 

Xigasho

[Miskiin-Macruuf-Aqiyaar]

Why Is Autism Rate So High For Somalis In Minn.?

 

 

Their colorful shops line the streets, catering to their own culture and drawing in ours. Beginning in 1993, Somali people began arriving in Minnesota from refugee camps in Kenya. By that time, Somalia's political chaos had led to the killing or starvation of many of its people.

 

For refugees, Minneapolis offered a place to start a new life, a new business, or a new family.

 

"Many things attracted Somalis to Minnesota to stay. Good health cover and good education," said Huda Farah.

 

Farah works on refugee resettlement with the Minnesota Department of Health. It's through her work that she's noticed something troubling within her community.

 

"We're seeing (an) increased number in autism," she said.

 

Reporter Amelia Santaniello asked her, "Is there autism in Somalia?"

 

"Not many, not many," replied Farah.

 

The Minneapolis School District is seeing a higher than expected rate of autism in its early childhood special education classrooms too.

 

"It's so glaring here in Minneapolis, I couldn't not see it," said Anne Harrington.

 

Harrington has been identifying kids on the autism spectrum for Minneapolis Schools for over 20 years.

 

"We have seen a tremendous number of children that are Somali, but born here in the United States or in Minneapolis who have autism," she said.

 

Out of 100 children in the Minneapolis Schools early childhood special education classroom program for autism, 25 percent of them are Somali. The district as a whole has only about 6 percent of students who speak or hear Somali language at home.

 

"They are showing the more severe forms of autism, not the broad spectrum of autism that we see in our general population," said Harrington.

 

Sharmarke Osman is one of these kids.

 

"I knew it (was) something wrong, but I didn't know (what) was wrong. I never heard anything about 'autistic' or 'autism,'" said his mother, Farah Osman.

 

Osman said when he was 18 months old, he would bang his head all the time. He wouldn't sleep. He couldn't talk.

 

"They tested for school first. In school. Then after that, they said he has autism. And I never heard, what does that mean, 'autism'? What kind of sickness?" said Osman, describing when she first received her son's diagnosis.

 

Perhaps the most troubling is that all of the Somali children the Minneapolis Schools have identified with autism were born here in Minneapolis, like Sharmarke.

The district doesn't have a single child born in Somalia who immigrated here receiving special education services for the disorder

.

 

"

I believe (it) is vaccination

," said Osman when asked what she thinks is the reason for her son's autism.

 

"In rural Somalia, there's no immunizations," said Farah.

 

She said parents like Osman in the Somali community all have questions about immunizations. She said they worry not only about the vaccinations their kids receive, but about the immunizations they themselves received before entering the U.S

.

 

"When Somali parents come from the refugee camps, some of them get immunizations within those camps regardless of whether it's in Ethiopia or Kenya or other countries," said Farah.

 

She added that because of poor recordkeeping in those camps, some Somalis receive the same vaccinations three and four times

.

 

"That's very worrisome. We need to find out what's going on," said Farah.

 

In the United States, the Centers for Disease Control said that research so far has shown no link between vaccinations and autism, but a number of studies are still underway.

 

Doctors in Sweden are calling for research on another possible cause of autism that could hold answers for the Somali community in Minnesota. Sweden has a high incidence rate of autism in its Somali children as well.

 

Doctors there are wondering if, for Somali people, a lack of sunlight in the winter, the widespread use of sunscreen, and efforts to avoid sun exposure are resulting in too little vitamin D being absorbed through their dark skin.

 

They theorize that a lack of vitamin D, possibly in conjunction with genetic or environmental factors, could be a cause of the disorder. They're calling for an official study.

 

"I think it's something that is interesting and should be pursued through research," said Judy Punyko, a maternal and child health epidemiologist for the Minnesota Department of Health. She said we're not currently set up to do that kind of research here.

 

"We are attempting to develop a data system that will collect data that is reliable and valid so that we can identify cases and track them over time," she said.

 

The Department of Health is just in the beginning stages of setting up that system, but in response to the high Somali autism rates reported in Minneapolis, the Department has formed a small study group made up of school representatives, epidemiologists and U of M medical experts to look at possible causes.

 

"It's very concerning. It's astounding to hear the numbers are so large," said Punyko.

 

For now, the questions in the subset of our community continue.

 

"At least every week, I hear about (a) new family that have a child with autism," said Farah. "We need to really investigate and find out what's going on."

 

Xigasho

[Miskiin-Macruuf-Aqiyaar]

For more about the connection between autism and vaccinations and immunizations, click inta.

 

I am sure this nameless disease is affecting a considerable Soomaali children everywhere in the West. Also you can't believe a considerable Soomaali children diagnosed (or misdiagnosed) what they call ADD -- attention deficit disorder. Ciyaal badan oo aanan meel fadhin karin ayaa buuxo, oo hadalkaaga inay dhageystaan iska dhaafee, waxaa leedahay aanan kusoo celin karin a minute ka bacdi because they suffer from too much hyperactivity.

 

I don't know if it is the result of marriage breakdowns or whatnot, especially the households where the fathers are absent.

[Som@li]

Give kids less sugar, and they will stop being ove-active.

 

And Autism,I have seen one kid suffering from this so far, and The Swedish findings is interesting one, many Somalis,(specially women use Hijabs and spend more indoors) suffer from deficiency in Vitamin D,in Somalia, Women even at confort of their homes, used to get enough sunlight at daarada guriga.

[Som@li]

dp,

[Buuxo]

I think there are many factors at play here. Autim and other behavioral/developmental disorders such as ADHD are on the rise in the west and not particular to Somalis.

 

Autism affects areas such as communication, social interaction and behaviour. When the child starts school they do not speak the language, the culture of play is different, behaviors and social interactions that were tolerated in the home is seen as abnormal, isolated and destructive.

 

I don't know about the vitamin D link, but there was this dodgy research, in which they gathered a bunch of kids newly diagnosed with Autism and linked it to the MMR vaccine, which is given around 12months, about the same period Doctors start to diagnose Autism if they haven't met developmental milestones. But they failed to show kids that did have the vaccine and not 'autistic'.

 

With the number of children Somalis are having, it’s no surprise that children do not get enough attention and play for them to reach development milestones; we are in the age of the race for the super-baby and of course majority of our children are disadvantaged.

[Som@li]

^So what is the answer? Buuxo, Have less children.

[Miskiin-Macruuf-Aqiyaar]

Give kids less sugar, and they will stop being ove-active.

What did you base on this, widaayoow?

 

Buuxo has made a little point, though.

[me]

MMA it's not only in MPLS, The rates in UK and Holland are also high. I know this from observation. The cause? I don't know.

 

It seems to me that almost half the Somali kids born in my area suffer from this disease in various degrees.

 

To the jokers on this thread, this illness is not a joke.

[Legend of Zu]

This is a serious issue with the Somalis in Australia as well but it has not recieved the attention is deserves. I may actually start a campaign ....hmmm. Aussies you hear me!

 

Cheers

[-Lily-]

I find the over-immunization of refugees very disturbing. I don’t think it is necessary to proof that immunization is linked to autism, if it keeps coming up it’s worth researching. There is still a big debate in the UK about MMR vaccinations for children and autism.

 

Vitamin D deficiency is also linked to many serious cancers. If you can afford it a sunny holiday during the winter months it is a must. Also, as a people and especially women we tend to avoid the sun even during the limited weeks it shines.

 

MMA, it is common knowledge that sudden sugar bursts in the blood stream make you more alert, in children this can be hyperactivity. Give children coke and chocolates, wait 15 minutes and see what happens. Why do you think adults drink red bull & other energy drinks for a pick me up?

[Som@li]

It is disturbing to hear all these diseases affecting the Somali community,Rabi ha sahlo.

 

MMA, Haven’t used visited mosques, big shopping malls, and observed the Somalis kids? Their parents are struggling to control them, extremely overactive and it is mainly nothing to do with sickness ADHD, but poor diet, Too much sugar.

 

Another big factor I believe is that Somalis are not acclimated, our genes are for these cold countries, our dark skin can't get enough sunlight, I remember @ UNI, I used to take this big jacket in winter ,@ freezing point, and some of the white students were wearing t-shirts.

[RedSea]

All another reason to pack and leave this land.

[Miskiin-Macruuf-Aqiyaar]

Me, something sinister is at hand. Somehow Soomaalida meel walba waa laga heystaa, nothing ka fakan la'nahay. Habaar xun na wada helay, oo ibtilo miiran.

 

Lily and Dabshid, I know about sokor and how dareenkaaga kor u qaadaa, yacni being higher active than normally. But waxaa la yaabanahay back home we used to eat sokorta itself, waxaana nama heli jirin, oo hadalka waa maqli jirnay, dadka naga waa weyna waa ixtiraami jirnay. Not kids raised at here. Probably the kids raised here exercise less, and devour more sugary products. Probably.

 

Waxaaba kaaga daran xataa masaajidka taraawiixda ma laga tukan karo hadalkooda iyo quuqdooda, and wax yar ma dhihi kartid, adigaaba laguugu baxaa. A few years ago xasuustaa iimaamka masaajidka ku dhex jiray ciyaalka meesha ku or ordaaye during taraawiix prayers, oo ul heystay. Mid waalan usha ma kula dhacaayoo, meeshii dhan fak yuu, don't hit me la wada maqlay. Yax yax. Waa cunug yar toban jir ahaa. I am sure iimaamkii kud isku yiray, totally unexpected.

 

More about the topic:

 

Welcome to America! – Hope you like the Autism!

 

They come to America in search of a better life. Their children get autism.

 

I wonder if they wish they’d just stayed home.

 

As reported by Elizabeth Gorman in the Minneapolis Post and David Kirby in the Huffington Post, there’s something unusual going on with immigrant Somali children in Minnesota and autism. It might also be happening with other immigrant groups.

 

According to Gorman’s article, about 6 percent of Minneapolis’ students are Somali-speaking, but “more than 17 percent of the children in the district’s early childhood special education autism program are Somali speaking.” (It’s estimated that 15,000 to 40,000 Somalis live in Minnesota, the largest Somali population outside of East Africa.)

 

She later goes on to quote Dr. Chris Bentley, the director of a nonprofit in Minnesota that assists children with autism and their families as saying, “We’re definitely seeing it, and something is triggering it.”

 

In the meantime, the Minnesota Department of Health is struggling to put together a study to determine if there is an unusual pattern of autism among the Somali children. Anne Harrington, an early childhood special education coordinator for the Minneapolis district is also sounding the alarm. “We have a number of families who have two children on the spectrum and sometimes more.”

 

Harrington adds that she knows of one apartment building “with Somali residents in which every family has at least one autistic child.”

 

She also noted that immigrant children are given more vaccines than regular American children and they’re often doubled up to make up for lost time. They may also receive some vaccinations in Somalia, but then are re-vaccinated when they enter this country.

 

Curiously, the Somalis don’t seem to have this problem in their native country. According to David Kirby, the Somalis refer to this as the “American disease.” Somali immigrants to Sweden are also noticing an increased autism rate, which has some experts in that country suggesting it may be a result of the Somalis dark skin and the differing amount of sunlight in Sweden, affecting the amount of vitamin D they receive from the sun.

 

It’s ironic that the CDC notes that those most likely to delay or refuse vaccinations are the well-educated because of concerns abut a link to neurological problems. Immigrant Somalis are asking similar questions about the vaccines they’re receiving. It’s like that old saying that if everybody says your haircut looks bad, you should probably wear a hat.

 

Experts in the United States have been able to portray our concerned citizens as ignorant of their family histories, or as one relative put it to me, “it used to be in the old days that if a doctor saw something wrong with a kid, well, they’d just...” and drew a finger across her throat. (Okay, she’s a kooky cousin, but I’ve heard that sentiment expressed more than once.) However, like many urban legends, I don’t believe my forefathers and foremothers were more likely to murder disabled children than our currently enlightened citizenry.

 

But if there is a kernel of truth that Americans have in the past been more likely to conceal medical conditions, I really don’t see how that applies to Somali society. East Africa is the area in which the human race began and the tribal societies there have preserved the wisdom of generations past.

 

Knowledge in these societies is passed on through oral tradition, rather than the written word. Pulitzer-prize winning author Jared Diamond (Guns, Germs, and Steel) is well-known for his observation that while tribal people may not have written language, their knowledge of the local environment is extensive. It's the reason so many pharmaceutical companies consult local elders about the possible medicinal properties of plants in their area.

 

But apparently the Somalis have never seen anything like autism in their own land. It's something they seem to have picked up on their journey to the west.

 

It’s something which should get everybody talking

 

Xigasho