Monday, November 22, 2010

Autism in Certain Minnesota Populations

Minnesota, the land of 10,000 lakes (quite a misnomer, as there are significantly more than 10K lakes), the land of sky-blue waters. Many people have the idea that Minnesota is a frozen wasteland, where people wear parkas year round and say "Ya, sure" a lot. The movie Fargo went rather far in perpetuating these myths. Well, I guess I can't argue with the "Ya, sure" bit, but the weather in Minnesota can be downright brutally hot in the summer. Overall, though, the seasons are pleasant and bearable if you know how to dress for them. It has a thriving music and theatre scene, as well.

The people are generally nice, too. But there is something about the population that most out-of-staters (and possibly even some Minnesotans) might not know. Minnesota is home to a rather significant Somali community.

Minnesota hosts perhaps the largest Somali population in the United States, many of them refugees. This started with the emigration of about 20,000 Somalis to the state. As of 2004, the state estimated the Somali population at about 25,000 (PDF). The Somali population in Minnesota also seems to be disproportionately hit by autism than the non-Somali population. A study by the Minnesota Department of Health found that Somali children aged 3-4 years had an administrative prevalence about 2-7 times higher than for non-Somali children (PDF). A limitation of this study was that it examined administrative prevalence (i.e., numbers utilizing public services), rather than population prevalence (i.e., actual prevalence in the population). The MDH also found that the disparity in administrative prevalence decreased (PDF) over the study period.

Once the folks at Generation Rescue got wind of this, JB Handley went in with guns a-blazin', telling the Somali parents that vaccines caused their kids' autism. In March of 2009, an article ran in The New York Times about the issue.

[Handley] warned them not to trust the state health department and suggested they slow down their children’s shots and get exemptions to school vaccination requirements. He also offered to pay for some to attend an antivaccine conference.

Handley's actions led to Somali parents refusing vaccinations for their children, which is concerning, since many in this community travel to Somalia to visit family, and diseases like measles are still a significant problem there. Handley went in with his anti-vaccine message despite the fact that vaccines were not clearly to blame:

But there are also children like 8-year-old Shumsudin Warsame, who does not speak more than one word at a time, runs in circles and hurts himself jabbing pens into his face. He was born in Somalia, grew up in Egypt and arrived here six months ago. He started having seizures before he was a year old, his father, Abdiasis, said, long before he had any vaccinations. (emphasis added)

Well, the issue brought up again over at Generation Rescue's blog Age of Autism in an article titled "IACC Part 2: The Somali Autism Clusters and More". This article is a summary of a session of the U.S. Department of Health and Human Services' Interagency Autism Coordinating Committee. Unfortunately, an official transcript is not available, so we'll just need to assume that AoA blogger Katie Wright is reporting things accurately, which is kinda hard for me to assume, given AoA's track record of distorting or misrepresenting the facts.

First off, something with which I agree. Wright reports that Lyn Redwood brought up the need for greater study of just what is going on in the Somali population. I concur. Given the apparent disparity between autism rates among Somali children vs. non-Somali, I feel that it is quite important to figure out a) if the difference is real based on population prevalence and b)_if it is really higher, why.

I did a brief PubMed search to find out what research has been done into autism in the Somali community. I found a total of 5 studies, three by the same authors (one of those being a follow-up study). All looked at Somalis living in Scandinavian countries (4 from Sweden, 1 from Norway). A small study from 2008 titled Prevalence of autism in children born to Somali parents living in Sweden: a brief report and the larger follow-up from October of this year, Prevalence of autism in children of Somali origin living in Stockholm: brief report of an at-risk population, confirm a higher prevalence of autism among Somalis compared to non-Somalis. So, there seems to be evidence that there is something about this population that puts them at increased risk of autism.

Wright expresses her frustration that the various health agencies are not moving fast enough for her, describing their "action steps" as "a whole lot of nothing". The frustration is understandable. Science moves slowly and doesn't provide the instant answers we so desire. However, I would rather researchers take their time and carefully examine the data than give an answer, that will most likely be wrong, before sufficient facts are known. She also raises what would seem to be an offensive statement:

Worse there was some Somali blaming. Don’t you love it when scientists go right to the “autism is caused by inbreeding” argument? My husband and I were asked if we were related, I kid you not, like 5 times. It is as if certain researchers cannot wait to get to the autism = mutant parents hypothesis. How many of us are really married to our cousins?

Given the poor understanding of autism in general and even worse understanding of autism among the Somali population, as well as the practice of cousin marriage in Somalia, it is an important question to ask. I tried to determine how common the practice actually is, but was unable to find anything beyond mention that it occurs. While marrying one's cousin and having children with them might not cause autism, it may play a role. Frankly, I don't think there is sufficient evidence, yet, to point to inter-familial marriage, but I don't think that it is a silly question to ask, either.

Wright continues:

American Somalis in Minneapolis have been pleading for help and for a substantive federal investigation into the causes of this autism cluster. All they have received in response are condescending lectures by the MN Dept of Health and reassurances that over-vaccination cannot be the cause.

The likelihood of vaccines being the cause is pretty slim. Remember that there are Somali children who developed autism before receiving any vaccines. There are Somali children who were born in the U.S. and, therefore, received the standard schedule and were thus not "over-vaccinated". Further, there is no evidence to suggest that getting a vaccine for a disease against which the child has already been immunized is detrimental.

Wright goes on to express disbelief that the National Institute of Environmental Health was not looking into an environmental cause for the higher apparent prevalence among Somalis. Let's just stop and think about this for a moment. The Somali population is living in the same areas as non-Somalis. They presumably have a similar standard of living as their non-Somali friends and neighbors. If autism is being cause by an environmental factor, then it should affect all populations regardless of race. However, it isn't. This points to something about the Somalis themselves that is different. In other words, there is most likely some genetic component to the issue. Of the research I managed to find on PubMed, one study suggests that vitamin D (or lack thereof) may play a role among the Somali population. However, this is a very small study of a preliminary nature and needs replication by others.

But a genetic basis is not what anti-vaccine activists like to hear. So, they bring up false dichotomies:

If the CDC can land helicopters in shopping market parking lots to immediately investigate an EColi outbreak why do they turn into “team give up (my words)” when it comes to autism?

E. coli outbreaks have a known cause, a known solution and can affect thousands upon thousands of individuals in a very short period of time. Autism has an unknown cause (or causes), no known solution and cannot "spread" to thousands of individuals in a short period of time. Of course CDC is going to respond quickly to stop something they know about that can affect so many people. Where there are so many unknowns, as is the case with autism, more study is required. That may not be comforting to families affected by an autism spectrum disorder, but what else would you have them do? There is no silver bullet, no magic elixir.

In the end, the various agencies are not "doing nothing." They are doing what is needed: research.

The Somali population in Minnesota does need support. They need their school districts and city and state government to provide the services their children need. And yes, they deserve attention from the research community to figure out what's really going on. What they do not need are anti-vaccine ideologues putting them and their communities at risk by urging them not to vaccinate and not to trust local, state and federal health agencies.

If anyone is doing a disservice to the Somali communities in Minnesota and elsewhere in the U.S., it is organizations like Generation Rescue/Age of Autism, who spread fear and misinformation without regard to known facts. The Somali people deserve better.

The Minnesota Department of Health has a resource page for the Somali community, including a Q&A that has a list of several studies looking at vaccines and autism that failed to find any connection.

2 comments:

  1. It's not AT ALL true that there has been no federal investigation of autism among the Somali in Minneapolis. CDC was heavily involved with the state's research, which was intensive and lengthy.

    My guess is that there's some overdiagnosing going on, although it's less easy to chalk up the elevated prevalence to local diagnostic customs when the same has been observed in Scandinavia.

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  2. @isles

    Yeah. I think the argument Wright is trying to make is that the CDC didn't study it the way the anti-vaxers prefer, i.e., vaccines.

    ReplyDelete

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