Rates of Autism in Somali Children in Minneapolis
July 24, 2008 by Kristina Chew, PhD
Filed under Health
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?”
Hello friends –
This is a frightening and confusing article, if accurate.
If I remember correctly, Minnesota has an exceptionally high per capita incidence of autism. (?) If this article is accurate, this isn’t a case of a Savagesque diagnosis of a brat, but rather, more severe affected chlidren.
One thing is for sure; considering the great language and cultural differences, this isn’t a case of people moving to Minnesota for all of the great services there. They don’t have too much knowledge about autism, much less how to go about getting services for it.
One also might wonder why, the Somali community is struggling to understand autism if, in fact, this is merely nothing more than more labeling, as opposed to an increase in prevelance. Even if children with autism weren’t taken to doctors in Somalia, if the prevelance was the same very high level, shouldn’t they have some type of understanding of autism; i.e, this child reminds me of the other families I knew in Somalia that had multiple children who didn’t speak, acted repitively, etc.
Scary stuff, IMO.
- pD
If kids back in the homeland are not being afflicted in the same numbers one has to wonder if the cause isn’t poor digestion from eating a non-native diet. (gut-autism connection) Just a hunch.
Also …
Minnesota has a lot of lakes, no? Maybe many of these new arrivals are frequenting the Mercury polluted lakes up there and fishing day and night to save a few bucks on the grocery bill. All of the states with high autism rates have an environmental Mercury issue. Oregon for instance has the largest Mercury polluter (a cement plant). etc etc
An alternative possibility posed by Jim Laidler a couple of years back. Current accuracy also depends on how well this data jibes with those current, since more accurate data is being sought by the CDC.
“…So, what is happening in Oregon and Minnesota? The theories of pollution, lead poisoning or mercury poisoning cannot explain why they have a higher prevalence of autism than Louisiana, New Jersey, Texas or Mississippi. Oregon and Minnesota do not have higher vaccination rates than the rest of the country, and their parents are not any worse or any better than the rest of the US. The difference occurs because the Individuals with Disabilities Education Act lets the individual states decide the details of eligibility. They cannot be more restrictive, but they can be more permissive. As a result, most states either use a slight modification of the DSM IV criteria or have the diagnosis of autism made by a qualified medical professional. Washington does this, for example, but Oregon and Minnesota use much broader criteria…”
http://www.autism-watch.org/general/edu.shtml
FWIW, given the description in the article, I am not sure how directly applicable is to the Somali students who are described as having more severe needs, and to be frank, I think kids who need help…need help, no matter what label they are given.
Just more info.
It was brought to the attention of my school district that the majority of kids assigned to special education classes were of ethnic and racial minorities, while the kids assigned to “gifted” classes were overwhelmingly white. Do you really, really think that it was because there was something in the water?
Were you offended by being asked if English is the primary language spoken in your home?
Minnesota schools have a history of labeling children as autistics who are not autistic.
The article says that “there is no conclusive medical data showing disproportionate numbers of Somali children with autism in Minneapolis.”
“Many Muslim Somalis marry their first, second or third cousins, putting them a category suspected to be more at risk.”
It’s telling that another subset of Somali immigrants in a completely different part of the world also have high rates of autism. Given that these are two geographically distinct areas, one would prima facie look first at what the people have brought with them, rather than or in addition to what they find when they arrive. It can’t be latitudinal–Sweden is at 62 and Minnesota hits farthest north at 49. The vitamin D idea is interesting, but apparently, half of the Swedish population is deficient in Vitamin D…so why would the Somalis stand out so much for it?
Must be that whole Scandinavian-Somali interaction triggering something.
@Palmer,
I’m not sure what I thought. Certainly we knew that the reason Charlie did not talk was not because different languages were being spoken in the household. The case manager was Hmong and had an autistic son herself. Also, I think it would have been a different experience if we had been in the suburbs, instead of the city.
@liquidzeolite,
not at all sure about recent immigrants spending a lot of time at the lakes—don’t think they are the ones with the lake property.
The genetic cause could also account for a higher number of cases of autism in a certain community. I wouldn’t jump on the toxic bandwagon so fast.
Minnesota has the highest rate of Autism. I just wrote an article about that subject last week http://wakingsophie.com/where-does-your-state-rank-for-autism-rate/
Kristina, I also wanted to mention that the question you cite has, to the best of my recollection, always been the first question that many screeners ask us…usually speech-language path folks (of course) but also others. And unintentional culturist that I am, I always sort of responded with an attitude of…well, duh…look at me, listen to me…what do you *think* we speak at home? I guess the answer might have been “Scots” or something.
Hello friends -
Here is a link to the swedish paper:
http://www.thelocal.se/13064/20080715/
A particularly troubling quote is included:
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.
One wonders, if what is being observed is nothing more than genetics, cultural differences, and aggressive school diagnosis, why wouldn’t they be calling it ‘Somali disease’?
What is being observed is unknown to these people previously.
- pD
@Sophie, the chart you noted contains figure for autism prevalence based on school districts figures, and educational classifications can differ from medical diagnoses. The source of the chart is Thoughtful House. According to the CDC’s most current figures, the prevalence rate is highest in New Jersey, where 1 in 94 children have an autism spectrum disorder.
@Emily,
Ah yes, I have been a little tempted (beyond briefly to say) to say, well, there is a lot of Latin going on here……
The language question is not an unreasonable question, in our multicultural society. Even in the old days when I was growing up, there were families who spoke one language in public and another at home.
I saw that the ADDM does not have counting networks in OR or MN, which would be interesting given the strong disparity in trends within those 2 states in particular. What would also be interesting is to compare the ADDM prevalence with those of IDEA, although the point is taken that IDEA may not be as reliable.
In reflecting back on that time when Charlie was being diagnosed, I recall a lot of defensiveness in myself—I think I was harboring an inner wish that that (other languages being spoken in the house) might be the only problem. I think the question also rang a certain way on my ears as it’s been many years that I’ve been asked “where are you FROM” and California is not considered a real answer.
And, to take IDEA into account, it would be interesting to see all the different ways to autis, autism spectrum disorder, are defined in the different states.
One last comment, which is really a question–my brain extrapolated this to Minnesota, but am I correct that this story is specific to Minneapolis/St. Paul?
What is the relative quality of services of the metro area to the more suburban and rural areas?
What is the Somalian autism prevalence in other areas of MN, WI and ME? How do they compare?
Is there a published source of autism statistics for Somalia and Eritea? I looked briefly this afternoon, but I couldn’t find any.
@Regan,
Even more, the article refers to Somali children in Minneapolis schools, though there are also references to the Twin Cities more generally.
And:
And:
St. Paul is in Ramsey County. And we lived in St. Paul and that was 9 years ago, but I don’t think the services we received were comparable to those that my friends in the suburbs had. We would most likely have moved out there if we had stayed in Minnesota, but we went back to St. Louis.
I would like to imagine that as a researcher based at the Univ. of Minnesota I have a slightly more local perspective…
1) Our “rates” of autism are definitely affected by local standards. I have met several students officially diagnosed with AS who would not, in my opinion, be diagnosed in many other regions. These are students with high GPAs, active social lives, and even varsity letters in sports. So, yes, we do seem to have a curious standard for “autism” among some clinicians.
Sorry for anecdotes which are not evidence. I admit that. I wish I could observe clinicians making pronouncements in a variety of regions to decide what the different standards are. Honestly, it is a very subjective art…
2) Somali immigrants do not use local lakes or ponds in high numbers. They live predominantly in Cedar-Riverside, while the bodies of water tend to be in very exclusive neighborhoods. I’m not far from Nokomis or Calhoun and I seldom see any minorities of any type… these are the “whitest” places in the cities, despite being walking distance from some affordable housing.
3) From Mayo Clinic (Mayo Vaccine Research Group, 2002): Somali children… tended to receive vaccinations at significantly older ages. Somali vaccinate rates (87%) are below average for the region.
Shocking quote: “None of the Somali vaccinations were recorded in a written medical record”
–
The Somali locals adhere to strict Halal dietary traditions. There are several specialized stores in our neighborhood. You cannot easily locate dairy products in these stores, enriched flour is not sold (but wheat flour is), and I have found locally raised lamb is popular — so rule out factory beef, pork, etc.
Hope the information helps in some way.
Side note, I speak to MN school districts and will have at least two, maybe three appearances this fall. I can promise you that the parents will speak up about vaccines even though I deal only with treatment issues… and the “richer” the school, the more likely I’ll meet up with parents dedicated to alternative treatments and various cures.
@CS Wyatt, thank you for this and I kind of have an idea of some whom you may speak to in the fall.
@Evonne:
I agree, there is a link between poverty and health, including rates of special education intervention. I also know that my own fate in life was the result of my race.
Racism and ignorance of cultural differences definitely affect our schools and our diagnoses of children. A “non-verbal” Somali? The children are raised in the strictest form of Islam. Of course they don’t speak of make eye contact. I mentioned this to a coworker and was told, “Children are children. Don’t be silly.”
I was just pondering my own interactions with the community. I was reminded of some indigenous Mexican cultures, in which authority is respected by not making eye contract, not questioning, and doing exactly as told.
Hate to say it, but culture as “disorder” would not shock me.
That’s an interesting thing about eye contact – I had this instinct that eye contact was rude, and was confused when my dad pointed out to me, when I was about 9, that I wasn’t looking at him while he was talking to me. I thought it a bizarrely obvious question, and said, “Don’t want to be rude”.
Perhaps, because in my head I know that eye contact is painful and uncomfortable for me, that it was likely that it would be painful or uncomfortable for others.
I come from Somalia about 4 years ago and never heard or seen the autism before here or even someone who got it. Also, I have my brothers, sisters and their families in different part of the world including Canada, Australia, UK and AZ and they’re all fine.
But, I know a someone here in MN who his two kids were diagnosed the autism after their 4 years old vaccine, and his own brother who refused to vaccinated his children about that age had moved to Dubai for schooling, because I think there isn’t such a requirement for school age kids to have that upto date vaccination record like here and all his kids don’t have the problem up there.
It seems to me the Somalis problem has something to do with the vaccine which maybe is too much doses for a small kid to have at once and I’m sure this isn’t something that we had in back home or especial for the Somalis.
Sorry if some of you don’t understand my writing. ( I’m still learning)
O
C.S. Wyatt: Thanks for that information. I’d wanted to raise the question of eye contact, lack of assertive speech, etc., but I don’t know enough about Somali culture to be presumptuous.
Also, in addition to different standards for diagnosing autism, I’m quite sure that “intermarrying” certainly plays a part in its prevalence in that area. It seems odd to me that there isn’t more assertive evidence out there that autism simply runs in the family, like, say, green eyes or something. I have read studies — including on this site — that suggest the parents of autistic children have a higher rate of schizophrenia diagnosis, as is the case with me and my mother. But less publicized is the possibility that the folks who were diagnosed with schizophrenia a generation ago are actually autistic — just given a different label. I’m convinced, now, that my mother is in fact autistic, especially considering that the “symptoms” she has shown that are more indicative of mental illness didn’t show up until she was given a cocktail of medications to try to control her, um, autistic traits.
I realize I’m wandering off topic now. But my point, I believe, is that some combination of social prejudice and of autism “running in the family” is contributing to the higher prevalence, or, more accurately, the higher rate of diagnosis. It would be nice, of course, if more people realized that autistic people just *are* and are not non-autistic people who have been poisoned. But then, of course, I worry that when more researchers do turn their focus to locating the genetic origin of autism (which they inevitably will, and some are already trying), they will also have more leverage for intrusive testing, etc. with the aim of *preventing* autism. This worries me not only from a “OMG it’s eugenics!” point of view, but also with an eye toward the coerciveness of the health care system. As in, perhaps, in the not-too-distant future, insurance companies, Medicaid, etc. refusing to cover the cost of assistance for autistic kids because autism can be identified as a “preventable” condition. And physicians — as they already do with fetuses suspected of having “abnormalities” as simple as fused fingers or missing toes — pressuring or bullying expectant mothers into aborting.
Again, not exactly the original topic, but I think this sort of thing warrants being placed into a context that explores not only “causes” but the implications of those causes.
The Somali parents wouldn’t be more likely to be educated as engineers or other related fields, would they? I know immigrants often can’t use their professional skills when they come to the US, but I’m curious whether the filter of who can immigrate might have an impact.
@Donna,
this is a good point and definitely makes sense for some other groups (south Asians for instance) since they often immigrate exactly because they are engineers, at least in my neck of woods.
However, I don’t think this is the case with Somalis since originally their immigration was based on refugee status so I would think they were not necessarily filtered based on their class or profession.
IMO, C.S. Wyatt also has a point. Very often cultural differences are not taken into account during evaluation and that’s enough to sway diagnosis one way or another in some autism cases.
One thing that probably hasn’t been considered is whether the assumption that autism is rare in Somalia has any basis in fact. Is there a survey?
What is the prevalence of mental retardation in Somalia?
Other than that, click on my ‘nym for a walk through literature that suggests autism is more common among the children of first-generation immigrants of various nationalities in many different countries.
@Omar
As noted by Mayo Clinic studies, vaccinations were less common (there is a religious exemption allowed, by the way), generally given at later ages, and usually administered in a “wider band” (incrementally, over time) within the Somali population of MN.
Studies in the Middle East and Africa have shown that when the U.S. DSM-IV criteria are used, more children are diagnosed as “autistic” than when the French criteria (more common in the region than the DSM) are applied.
The official count of the WHO is 16,000 cases in Somalia, with a diagnostic rate of 1:2000 or higher, but this was highly regionalized. No full-scale study has been conducted in Somalia, for somewhat obvious reasons. (2005, WHO survey.)
Most African nations surveyed do have a high rate of “hidden” conditions. This was assumed to be cultural.
Severe cases are more problematic.
Infant mortality rates for African-Americans and African immigrants are 13.6 to 27 per 1000 births, compared to 5:1000 general rate in the U.S. Rates of retardation are also tripled, as are rates of autism.
@Donna:
Somali immigrants are among the “least educated” according to MN Dept. of Education statistics. They have a special immigration status due to the civil war in their nation.
They have several special charter schools here, including one now in some trouble for being overtly religious. It is a highly segregated population, clearly distinct locally. There is a Somali “healer” located on 35th street near my house, for example.
As more become aware of religious exemptions for vaccinations, I expect to see a rise in mumps, measles, and other infections. It will be interesting to see how MN reacts.
We also have a religious exemption for the genetic screening required in MN, but it is “opt out” so most people don’t seem to know they can skip the screening.
Exemption Law:
http://www.health.state.mn.us/divs/idepc/immunize/laws/exemption.html
If the person has not been immunized because of the conscientiously held beliefs of the parent/guardian of the minor child (or of the emancipated person), the parent/guardian (or emancipated person) must submit a notarized statement signed by the minor child’s parent/guardian (or by the emancipated person) to the school or childcare facility specifying the immunization(s) is not required.
WCCO on high autism rates among Somalis in Minnesota:
Vaccinations are brought up; how autism is understood and diagnosed in Somalia is not.
My wife and I watched the report on WCCO. It was lousy reporting, just like it has been all week.
It was curious that the report focused on “avoidance of sunlight” among immigrants from Africa. But they didn’t even bother trying to explain that statement or its source.
At least they did mention the high rates of autism being diagnosed in Israel among Ethiopian immigrants, as well as the high rates of East Africans with autism in Sweden.
That 6% of the population is 25% of special education points to a much larger problem. The same ratio hold for autism, by the way: Somali’s are 25% of the IDEA/OSEP autism IEPs reported by Minneapolis.
It was not much of a read and the way the Swedish newspaper (a Swedish English-language newspaper) is being cited, you’d think it was actually a scientific publication.
C. S. Wyatt
((Your Wrote))
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I think there is nothing to surprise when you see a 25 years old Somali man/woman who can’t read or write because as we all know there wasn’t such a central government in that country for the last 18 years and since they had arrived here, in the mean time lot of them are graduating from the high schools, colleges and University in every state and for that matter who knows for how your grand parents or greater grand-parents were when they come over here? Therefore I’m suggesting it’s good for you to educate yourself and learn more about this community before you write something that isn’t true, unfounded but baseless gossip, indeed.
The last an estimate shows there is more than 30,000 of them in here MN and you are talking about just one Somali healer near your house although I don’t heard before and personally don’t belief such a healer could do anything for me, but you don’t see for how many Christian clergies/pastors on the national TV shows on every weekend that saying they can heal a someone who maybe was blind, handicap, deaf or worse for simply touching the person’s head or hand and the person can get up from the wheel chair and star walking or could see or hear.. Which I do respect for whatever someone beliefs regardless of their back ground.
When it comes to the Autism epidemic, no matter for what Mayo clinic or other institution would say this is something that terrorizing the community with those who were born in here not the immigrant kids from Africa and we have to find an answer for it.
((C. S. Wyatt Wrote:
They have several special charter schools here, including one now in some trouble for being overtly religious. It is a highly segregated population, clearly distinct locally. There is a Somali “healer” located on 35th street near my house, for example.
As more become aware of religious exemptions for vaccinations, I expect to see a rise in mumps, measles, and other infections. It will be interesting to see how MN reacts.))
I think there is nothing to surprise when you see a 25 years old Somali man/woman who can’t read or write because as we all know there wasn’t such a central government in that country for the last 18 years and since they had arrived here, in the mean time lot of them are graduating from the high schools, colleges and University in every state and for that matter who knows for how your grand parents or greater grand-parents were when they come over here? Therefore I’m suggesting it’s good for you to educate yourself and learn more about this community before you write something that isn’t true, unfounded but baseless gossip, indeed.
The last an estimate shows there is more than 30,000 of them in here MN and you are talking about just one Somali healer near your house although I don’t heard before and personally don’t belief such a healer could do anything for me, but you don’t see for how many Christian clergies/pastors on the national TV shows on every weekend that saying they can heal a someone who maybe was blind, handicap, deaf or worse for simply touching the person’s head or hand and the person can get up from the wheel chair and star walking or could see or hear.. Which I do respect for whatever someone beliefs regardless of their back ground.
When it comes to the Autism epidemic, no matter for what Mayo clinic or other institution would say this is something that terrorizing the community with those who were born in here not the immigrant kids from Africa and we have to find an answer for it.
I am Somali and I do have two girls born in U.S. Yes, even though I do not see the signs of autism, but I am worry. In MN our early education system is far from perfect when it comes to addressing the basics like language resources, educating families about autism, or any other concerns their kids may have. First teacher’s deals with the immigrant mother like they’re unintelligent, the governmental agencies sees as problem and good hunt for grants. Middleman so call Somali Educated individuals who has no regards other than getting piece of the pie. Now it comes to the truth is autism in the Somali Community really exist? Do language/ lack of early education play a role? Since immigrant mothers struggles daily basis and don’t have time for their children “lack of activities, socialization, peers, contributes? I guess we never know the truth, but let’s not rush to something is wrong labeling at least for now
@Farhia,
Hope your daughters are doing well. Are there any efforts with the education system to reach out to the Somali community and is there are, what do you think of these—not really helpful, not sufficiently understanding of the situation for Somali families? (Hope these questions are all right to ask.)
From an article in today’s Minneapolis Star-Tribune:
After reading all of these postings there is one thing is that we need a better set of rules on how to tell who has autism and who don”t. I know there are many diffent neocenes of the disorder. You can take two people and show them the same thingand they will see two diffent things. So as was said on another board we need a bio marker. So her is just an idea on a bio marker. What if we take a blood and hair sample and see how much lead, arsenic or thimerosal. You may have to take samples of older that we know that don”t have autism to get a base line and when the line exceeds a certain level we could say that the disorder is there.
I don’t understand why media especially Minneapolis is fixated on Somali Issues!! I do believe there are many American born who has Autism and I haven’t been any news comes from that. Startribune other like newspaper trying to make their mark on Somali Community like any other immigrants who come before us/have suffered misleading perception. I urge you not make this issue as problem only happens to Somalis, believe me I never heard of Autism before I come here. 100% believe teachers, doctors, social worker in the school all making it bigger than it’s and put fear in our community.
I certainly believe any Somali mother wouldn’t listen false information that cycling around them. I am one of them. Get the point nothing is wrong with us, just few kid who happen to be sick, just like any other kids in America!! I never recall kids who have cancer in our community that doesn’t mean that only this disease happens to America kids only. People think!!!!!
Hello everyone,
I am also Somali, attending one the fine universities in MN. I see a lot of discussions going on in here and I am glad that most of these are positive and from concerning fellow humans. First off, I was shocked when I heard the news of the raising rate of Autism among Somalis in Minnesota. There are many factors why these studies show that Somalis in MN have the highest rate of Autism. First, we have to consider “cultural differences”. Somali culture is far different from Western Culture and people find it weird even teachers, doctors and a like. Therefore, before diagnosing a child with a disorder, doctors need to be sensitive to cultural differences. That I believe is an important step and the way to make sure that a child is not mistakenly diagnosed with a disorder they don’t have, is to have doctors, psychologists and professions that understand the culture. This means that its fair to consult with Somali doctors/students that care this matter.
If Somali children in Minnesota has this type of disorder, then that alone tells that it has to do a lot with environmental causes. There are thousands of Somali across the Globe, in places like Canada, Holland, Norway, Uk, Denmark. We have to ask ourselves why this is only happening in MN and in Sweden. There has to be some sort of chemical that these people enter counter with that causes this.
I’m only suggesting that we all look into this matter with a an open minded heart and mind, to further our research and have the Somali Community take part in the massive researches going on in this matter. Somali Community in Mn have doctors, Lawyers, Social works and anyone that can help. There’s a saying that says, “send a thieve to caught a thieve”, Our doctors and Students can help a great deal, so let us participate. Let’s all help each other, let’s have understanding and respect for one another.
God Bless
thanks laylo, we wish all somali professions and the other community help us.