Somali autism riddle
Sometimes the world of autism produces an unusual event that challenges existing notions about the condition. These events need investigating in case they turn out to be significant. But too often their novelty value attracts premature speculation in the media. In July 2008 there were press reports that drew attention to a cluster of autism cases in the childen of Somali refugees in Minneapolis. In March 2008 a study was published that drew attention to high rates of autism among Somali children in Sweden.
There was a brief flurry of interest in the online autism world. Kristina Chew’s article provoked much discussion on Autism Vox. David Kirby weighed in of course with Is Autism an “American Disease?” I found his article interesting because he drew attention to the little known phenomenon of higher than average autism rates amongst the children of immigrant families, especially among non-white migrants to Europe and North America. Joseph has written a good introduction to the research literature on this. Despite going back over thirty years the literature is not extensive. But it does suggest that cultural and linguistic differences might be at least as significant as the ethnicity of the migrant populations.
Unfortunately Kirby confuses the question by trying to connect vaccines to immigration. But it is a very muddled connection. According to Kirby foreign migrants come mainly from countries which still use thimerosal in childhood vaccines and have good vaccination records (92% coverage in Mexico for example). He claims that
“many if not most of these children are routinely revaccinated on entry into the United States.”
Even assuming that Kirby is correct, what has this to do with the Somali children? They were all born and vaccinated within the USA. And the most dramatic increase in autism is in Somali children enrolled in early years programmes whose vaccination schedule would have been largely thimerosal free. If the Somali phenomenon is part of a broader trend affecting the children of immigrants then it is clear that vaccination history is not a commonality that they all share.
Kirby mentions vitamin D as another potential commonality. Lots of migrants are dark skinned and come from tropical or sub tropical climate zones. They come to countries in temperate climate zones with much less sunshine. Vitamin D deficiency is a recognized problem. But it does not cause autism.
A search of PubMed for autism and vitamin D deficiency found 3 articles: two were case studies of rickets in autistic children with restricted diets. One was about possible vitamin D deficiency in autistic Somali children in Sweden. But it is only a brief note (less than two pages) in Swedish and there is no abstract available in English. I did turn up another article, this time in Medical Hypotheses, that suggested a link between vitamin D and autism. It argues that lack of sunlight, particularly UVB penetration in northern climates makes dark skinned people more prone to vitamin D deficiency and hence more prone to autism. This link to autism has been described as no more than “an interesting speculation,” by Dr. Wendy Roberts, a professor of pediatrics at the University of Toronto. It is also interesting that the author of the speculation is founder of the Vitamin D Council whose mission is
to put an end to the worldwide epidemic of Vitamin D Deficiency.
Perhaps it is not about commonalities. What if the Somalis are a special case? Over on Age of Autism Kirby speculates that it could be more “evidence” of mitochondrial influence on autism.
I wonder if the fact that Somalians reflect a different mitochondrial haplogroup than most of the rest of Africa (M1 rather than L) might provide a clue here?
I had no idea what haplogroups were before now, but I do know that the distribution of mitochondrial haplogroups as depicted in this mitochondrial map of the world is far too complicated to support Kirby’s “wonderings” without some very hard data. What if we compare the data from Sweden and Minneapolis?
The first thing to note is that there is no relation between the two datasets. In Sweden an epidemiological study found a rate of 0.19% among children with a degree of learning difficulty(Europe)/mental retardation(USA). This is consistent with the consensus figure of 20 in 10000 for ASD amongst children with additional learning difficulties. The comparable figure for Somali children in Sweden is 70 in 10000. In Minnesota there is no reliable epidemiological data for autism. There is the administrative data for children in receipt of autism services. But this is based on teacher assessment and does not require diagnosis by a trained clinician. A clinical diagnosis requires
A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
The three categories comprise the famous Triad of Impairments. In Minnesota, providing you satisfy their criteria for the first part of the Triad, meeting their criteria for either of the other parts is sufficient to access autism services. This is much less demanding than the DSM-IV criteria and probably explains why Minnesota has more than twice the national average of autism cases on its books. Even though the figures for Somali children in Minneapolis, at 1 in 28 or 3.6 per cent. are at least 4 times the national average they are only twice the average for Minnesota. Compared with the Swedish figures of 20 in 10000 for natives and 70 in 10000 for Somali immigrants, Minneapolis has a baseline figure of 180 in 10000 for natives and 360 in 10000 fo Somali immigrants.
All we can say with certainty is that
- no matter what criteria you use, the children of foreign migrants are more likely to be identified as autistic than native children.
- the higher the “going rate” for autism in a specific community, the higher the corresponding rate will be in the migrant community.
- clinical criteria are more parsimonious than administrative criteria.
Finally, the Age of Ignorance makes the important points that
- Somalia is a war zone and the refugees who have made it to America have suffered unspeakable hardship and trauma along the way.
- The children of psychologically distressed parents frequently display evidence of psychological distress themselves.
Whatever the actual rate of autism in Somali communities it requires careful investigation. I agree with Steve Novella that
What we don’t need are people with an agenda politicizing this issue.
I concur completely with the Age of Ignorance conclusion
One further comment. What Kirby, et al, are doing with the poor people of Somalia, i.e. using them to further their agenda, disgusts me. The people of Somalia are living in some of the poorest conditions in the world. They are being subjected to war, war where people die, where people are psychologically damaged with PTSD, depression, etc. They are uprooted and forced to leave their homes to protect their families. It is well known that children of the victims of war, e.g. survivors of the Holocaust, develop psychological problems.
Kirby and his acolytes on the blogs Age of Autism, Injecting Sense and Adventures in Autism are trying to exploit the situation in Somalia. The people of Somalia have suffered mass murder, rape, torture, famine, disease - all the usual features of a bloody civil war. Half of all children under five in 1993 died in Somalia. A third of all refugees have been tortured. Maybe having traumatized parents who are strangers in a strange land and growing up between two cultures is a more significant environmental difference for these children than vaccines or sunlight.
Comment by jypsy | November 20th, 2008
I take it you’re not on John Cannell, MD’s mail list (vitamindcouncil.org). Lemme know if you want copies of his stuff like his latest - “UNPRECEDENTED WARNING ABOUT COD LIVER OIL - November 11, 2008
Today, sixteen well-known experts, including professors Walter Willett and Ed Giovannucci of Harvard, Dr. John Hathcock of the Council for Responsible Nutrition, and Professor Reinhold Vieth of the University of Toronto, published an unprecedented warning about the ingestion of cod liver oil and resultant vitamin A toxicity.
Cod Liver Oil, Vitamin A Toxicity, Frequent Respiratory Infections, and the Vitamin D Deficiency Epidemic
John J. Cannell, MD; Reinhold Vieth, MS, PhD; Walter Willett, MD, DrPH; Michael Zasloff, MD, PhD; John N. Hathcock, MSc, PhD; John H. White, PhD; Sherry A. Tanumihardjo, MSc, PhD; D. Enette Larson-Meyer, PhD; Heike A. Bischoff-Ferrari, MD, MPH; Christel J. Lamberg-Allardt, PhD; Joan M. Lappe, PhD, RN; Anthony W. Norman, PhD; Armin Zittermann, PhD; Susan J. Whiting, MSc, PhD; William B. Grant, PhD; Bruce W. Hollis, PhD; Edward Giovannucci, MD
Using the strongest language published to date, the group condemned the current (1997) Food and Nutrition Board (FNB) recommendations for vitamin D, stating “The 1997 FNB recommendations offend the most basic principles of pharmacology and toxicology, leading us to conclude that the current official guidelines and limitations for vitamin D intakes are scientifically indefensible.”
In addition to warning about the consumption of cod liver oil, the above experts recommended healthy children take 1,000 IU/day of vitamin D for every 25 pounds of body weight. In some cases this is more than ten times current recommendations for children by the government and professional organizations.
Finally, the group recommended that “children with chronic illness such as autism, diabetes, and/or frequent infections” may need to take even more vitamin D, “doses adequate to maintain their 25-hydroxy vitamin D in the mid normal of the reference range (65 ng/ml) - and should be so supplemented year around.” Less than one percent of American children currently have such levels.
I’m sorry I can’t send you this paper. Even though I wrote it, I had to pay to download it and agree not to reproduce it.”
He’s more than convinced that autism is all about Vit. D
Comment by Joseph | November 20th, 2008
Exactly. A much more plausible hypothesis than vaccination or lack of sunlight is maternal stress. See Kinney et al. (2008) (two papers), Mueller & Bale (2007), Previc (2007), Ward (1990).
Comment by Socates | November 20th, 2008
I’d be interested to see if these diagnoses are accompanied by the well documented familial BAP - I would’ve though the result would be telling.
Pingback by About the “Cluster” of Autism Among Somali Children in Minneapolis | November 20th, 2008
[...] among proponents of environmental causes of autism such as journalist David Kirby. Mike Stanton at Action for Autism gives an overview of all this, and notes how Kirby and others sought to connect the Somali autism [...]
Comment by Mike | November 20th, 2008
Hi Jypsy
“Today, sixteen well-known experts…” Well I counted 18 signatories to that diatribe. Any idea which two are not well known experts?
No, I am not on his mailing list and from what I have read he is more than convinced that EVERYTHING is to do with vitamin D deficiency. It makes me wonder how we ever survived the Ice Age.
Joseph,
Regarding maternal stress, we may yet get to test that hypothesis with the next wave of refugees from the Congo.
Socrates
Given their history we are more likely to find PTSD than BAP in the parents.
Comment by Tyler | November 27th, 2008
Something that I don’t see mentioned in the article, and forgive me if it has been, but successful emigrants are a group that have gone through a rigorous selection process. The obvious first is surviving whatever conditions there were in. However they are also a self-selected sub-group as well as typically going through a detailed assessment and judged as “people we want to move here”. Perhaps that selection process is also inadvertently selecting for parents that are more likely to have autistic children, or at least children more likely to be diagnosed as such.
Although having less than stellar English (or whatever is common in the new country) language support at home might also tend to have poor language skills stand out quicker, or even be mistaken for. That is a fairly common trigger for a child having an assessment done. It could be just as simple as these kids being more scrutinized for autism. It would be interesting to see what their assessment rate is vs the diagnosis rate.
Comment by Sadik | January 12th, 2009
I am Somali though not from Somalia but from Kenya. One thing that I have observed over time is that most of those who made to the US and other western countries were the financially able and not neccessarily the most disadvantaged. The most disadvantaged as I know are still in Somalia being shot left right and centre by the many militia groups and lately some neighbouring countries too. The rest being in refugee camps in the adjacent countries with Kenya having a significant number of them. If my observations can be proven true in a scientific way then indeed the migrants in these developed countries then havent suffered much compared to the ones still living in the squalid camps. Maybe someone should try to use these refugees and the ones still in Somalia as a control group and research on your theory.
Comment by Mike | January 14th, 2009
hi Sadik
I am not certain if you were replying to one of the comments or to my original article. I certainly take your point that those who have escaped the horrors of that war torn region are amongst the least disadvantaged of the refugees.
Even so, I think it is fair to say that compared to the people of the west, these “lucky ones” are still disadvantaged and have suffered trauma that we cannot imagine. Whether this is part of the explanation for the figures for autism amongst Somali refugees is an open question.
The plain fact is that we do not know. We do know that the people trying to exploit this situation to further their anti-vaccine propaganda are beneath contempt. More than that I cannot say.
Comment by Idil | January 16th, 2009
Most of the Somalis living in Minnesota are refugees from Somalia meaning someone sponsored them or the US government brought them. They are not financially well off or even close to. A lot of these people lost family members in the war, have suffered physical, mental and emotional stress themselves. When you have to flee your home often as the case was for these new immigrants with only what you had on at that time, your body and mind endure so much strain and hardship. If anyone remembers Katrina and how people suffered even though it was only few days long, imagine suffering for 18 years long with 100 times worse conditions and no government to help you and send you helicopters. Many of the families whose children are diagnosed with autism in Minnesota are from the south of Somalia where there was the heaviest fighting. There are families that have 5 or 6 kids and 4 or 5 of them have autism. Therefore, whatever is going on whether it is genetic, environmental, vaccines, low Vit D, etc, we need to invest more in research and find out. I also should mention that Autism did not exist in Somalia as recent as 10 years ago. I have heard few kids born in Somalia with autism, surely not as high as the rate in Minneapolis.
Autism is rising globally and medical professions need to not cancel each other while kids suffer. They must collaborate and cooperate with each other because that is how you find causes and cures of diseases. That is the job a true medical professional and the job of a tru journalist is to write the facts and not add opinions. That is what we hope from them.
Thanks!
Comment by deqa | February 1st, 2009
Autism is a broad spectrum, meaning that not all diagnosed children and adults will have the same problems. I am a somali mother with an autistic child living in the Uk. the system here is quite behind compared to the USA. When a diagnosis is obtained by the parent, the families are left behind with “we dont know the cause, nor there is a cure”. I myself have done a lot of research and discovered that some children will have a lot of gut problems, which affects their general health, e.g my son. they are various individuals and organisations that promote the diet therapy. This can be Gluten-and dairy free diet or the SCD-diet, it depends on how much carbs the child can tolerate. Their is the vitamin therapy and not to forget the biomedical intervention. A lot of somali children here are being treated with the diet therapy and the biomedical intervention. There is a positive feedback, after chelation has been administred. my child has been on the gluten and dairy free diet for over a year and this has been successful, he has gained weight, eats better and sleeps better. he goes to a an autism specialist school and i get a good feed back in regards to his behaviour and his sensory issues are slowly reducing. We are on the biomedical intervention, we have not done the chelation yet, but we will do around May this year. we have to heal the gut first before we take that step. I am very hopefull that it will increase his learning abilities and his communication/social interaction. We have done the lab test for the organic acid test and it came back with high levels of led and mercury. Going back to the point, why we did not have this disease in Somalia and we do here in the western countries has maybe something to do with vitamin D deficiency, but on the other hand we did not have a controlled sample of the somalis affected wit the problem, exposed with sun for a long period of time. In regards of research, the oxford and cambridge universities are doing two different researches about the cause of autism, this is now narrowed down into: genetics, diet and environment. The money availabe in the uk for autism research is £3million pounds and the funding for caring autism adults is over £300 million pounds.
Comment by FreeSpeaker | March 21st, 2009
To all those Somalis who have posted and or read this or my blog, AgeOfIgnorance, please know that I have deep feelings for those of you have managed to leave, and I cry for those who remain.
I hope that all of the needs of your people are addressed, the most important one being peace.
Comment by davidncldl | March 15th, 2010
I think you have an extraordinary nerve suggesting “What we don’t need are people with an agenda politicizing this issue”, when your own agenda could not be more obvious. This is the least ‘politically neutral’ web site on autism I’ve ever come across. When you say “The people of Somalia have suffered mass murder, rape, torture, famine, disease - all the usual features of a bloody civil war”, you fail to mention that this is at their *own* *hands*. You appear to be suggesting that trauma can induce autism when there is scant evidence for this sort of magical thinking. You are assuming that the stories told by refugees are all true. This is simply naive. The vitamin D theory is one of the best contenders for years and you seem to regard it as some sort of racist threat prefering to imagine that Western colonialism or sytemic racism is somehow implicated. Don’t worry I wont come back here. I prefer a scientific approach.
Comment by Mike | March 18th, 2010
When you say “The people of Somalia have suffered mass murder, rape, torture, famine, disease - all the usual features of a bloody civil war”, you fail to mention that this is at their *own* *hands*.
Well David, it is my understanding that “civil war” usually means “at their own hands” or at least at the hands of their fellow countrymen.
I am not suggesting that trauma causes autism. I am suggesting that the very loose criteria for autism used by Minnesota mean people who do not meet DSM-IV criteria are getting an autism diagnosis. Could trauma have contributed to their symptomatology? It is a valid hypothesis given Rutter’s discovery of Quasi-autistic patterns following severe early global privation in Romanian orphans adopted by UK parents after the collapse of the Ceau?escu regime.
You accuse refugees of lying about their treatment and introduce a spurious argument about racism. And where is the evidence for your Vit D theory? Not in Pubmed that is for certain.