Let me start out by saying I hope a good answer is found for the high number of Somali children getting special education services in MN under the autism label. The only way to do that properly will take time, money and cooperation from the Somali community.
That said, I will admit that I have avoided this subject up until now. It was very obvious to me that without accurate numbers, this is likely going to just be a game of politics. And, let’s face it, educational numbers are not an accurate way to measure autism. The fact that David Kirby chimed in very early didn’t help either. If I’ve learned anything reading blogs, it is that Mr. Kirby is quite willing to misuse data.
As background, there are more young Somali kids in the Minneapolis schools getting services in autism preschools. Groups such as Generation Rescue have been using this to support the idea that vaccines cause autism. Others have been claiming that vitamin D deficiency is to blame.
It is worth noting that the fraction of Somalis in the autism preschools is about 1%. While this is high compared to the non-Somali’s in preschool, it is about the same fraction for older children in the Minneapolis schools.
As I said, I was planning on leaving this subject alone. That is until I read the Simons Foundation blog on the topic, reporting on this report. The SFARI blog (as it is known) uses precise language to describe the situation (something that would be good for us all to learn).
Public health clusters are usually suspect, but in a report released last week, the Minnesota Health Department and the Centers for Disease Control and Prevention confirmed that, among 3- and 4-year-old children, those of Somali origin are two to seven times more likely to be placed in preschool programs for autism.
That’s right. They didn’t find that more Somali kids have autism, they found that they were placed in autism programs. You don’t need a medical diagnosis to be placed in an autism school program.
But that wasn’t what got me to write this post. What prompted me to blog was the next sentence:
The report also found other ethnic trends in these classes: just two Asians and one Native American between 2005 and 2007.
Wow. There were even years with zero Asians in those classes. If one is to take the data from the Minneapolis schools as indicating that Somalis have more autism, one has to then explain why Asians and Native Americans have almost no autism!
Why does this bug me? Because it exposed the exact sort of hypocrisy that typifies the efforts of Generation Rescue, Dan Olmsted, Mark Blaxill, and David Kirby (to name a few): “Look until you find something that supports your preconceived notion, then stop!!!!” They have to stop before they find something that would be difficult to explain–like the low prevalence amongst Asians and Native Americans.
Generation Rescue’s motto is “Autism is preventable and reversible”. If so, why aren’t they looking into the low administrative prevalence amongst Asians and Native Americans in Minneapolis.
Jenny McCarthy has often complained that no one wants to study her son to see why he was cured of autism (which begs the question: why hasn’t the alternative medical community studied him?). Why isn’t Jenny McCarthy and her partner Jim Carrey in Minneapolis calling for a study of the Asians and Native Americans in Minneapolis?
I could keep going on and on, but you get the point. Generation Rescue cherry picks the data that supports their notion of vaccines causing autism. They ignore the inconvenient information. One group, the Somalis, are used as political pawns because they help GR with the idea that vaccines cause autism. As to the idea that autism is “preventable and reversible”? I guess if GR really cared they would be looking at the Asians and Native Americans in Minneapolis.
Left Brain Right Brain 
I tend to think that some fraction of the Somali students show some difference from what the educators expect as normal, the educators respond as they see fit, by placement in a program to remedy the difference, but that doesn’t mean that they really have Autism. They have enough items on the short list (shared attention, communications, socialization) that really doesn’t describe Autism at all, but the educational program will address these issues, or so they think.
Even the DSM clinical definition of Autism/spectrum disorders is still changing. I was shocked to find out that the Asperger’s disorder I am diagnosed with was described about 30 years before the english/american literature picked it up. And the psychological/psychiatric description still isn’t close to accurate, for many of us. When the researchers finally get the biomarkers for diagnosis down, or segregated into what the Autisms really are, then we might get a better description written.
(And all the while there are people like me that need help with tasks like bookkeeping and household maintenance floundering around trying to pretend to be good citizens while slaving away at work.)
Which leads into my next complaint.
Why in the hell (in USA at least) do we have special laws written for support for every different condition?
When a person needs support, they need support, regardless of what their MD/GP/Quackologist has diagnosed them with.
Several programs for support require a diagnosis, (ie Autism and Mental Retardation) which some people have, but do not have formal diagnoses for, but they need support anyway. And they might not be able to go see the specialist for diagnosis due to lack of insurance coverage, rural isolation, or plain old fear of doctors or other people.
Legislators, please get your thinking caps on, and (in USA) get off your bums.
This is a great article, Sully. I particularly liked:
They didn’t find that more Somali kids have autism, they found that they were placed in autism programs. You don’t need a medical diagnosis to be placed in an autism school program.
Surmise: Somali refugee children socially behind age peers because of life in camps, trauma. Autism programs best fit for remediation.
Christopher Gillberg, one of the more respected autism researchers who serves on the editorial boards of major medical journals devoted to autism research has also reported a higher incidence of autism in children born to Somali immigrants in Sweden. He also found that children born to immgrant mothers from Uganda more likly to be diagnosed with autism than the general population.
http://www.ncbi.nlm.nih.gov/pubmed/18754897?
http://www.ncbi.nlm.nih.gov/pubmed/7787384?
Is Professor Gillberg using the Somali immigrants as pawns?
I think the obvious question is whether Somali children who are 7 or 9 in Minnesota are also over-represented in the autism category. That would be more interesting, and I’m surprised they haven’t looked into this. I’m guessing there’s nothing unusual to report about this.
From the information we have thus far, it’s reasonable to suppose that autistic Somali preschoolers are simply more readily identified and placed in special education programs with the right label.
Hmm, yesterday I had written a response, but somehow it never posted.
I think these children are showing just enough of the short list 3 (communication, socialization, shared-attention) that the educators placed them into a program they thought would help. There may be some autistics in the group, but without clinical diagnoses it is not wise to hold them up like we are being told GR is doing, and inferring that this is a cluster of vaccination induced autism.
I feel the short list 3 are very vague, and even feel that until we do have more biomarker type tests, and more of the Austisms sorted out, even the DSM descriptions/diagnostics will continue to miss the mark. i.e. Close to 30 years went by after Asperger’s was identified but before Lorna/Uta started work on them. (But this slow refinement has occurred with other conditions to, like Downs versus the previous term used to describe it.)
cpu52362,
sorry, your first comment was stuck in the spam queue. I just went through that and got a number of good comments unstuck!
rajensen,
did you skip over the introductory paragraph to this post?
In case that isn’t clear enough, then, the answer to your question is no.
I temped to say the reverse is likely – That the apparent issue will be minimized, stalled, and obfuscated so that political and health policy objectives are not questioned. In the meantime, the root issue determination is delayed, and needless additional cases may result due to politics, whether that ends up being related to vitamin D, prenatal exposures, or any number of other factors. Previous comments from school officials have been dismissive of the likely hood of autism with other issues, though I can not find those quotes now. In fact, I think it was the school system that first tried to raise the alarm level based on what they were seeing, and they are very familiar with autism in MN.
I am also puzzles about why they chose the age groupings that they did.
I am convinced that if an issue does not have the pandemic velocity of the swine flu, we do not have agencies or resources geared towards taking any sort of real investigative action in proportion to the long term health and financial risks that we face.
As to “The only way to do that properly will take time, money and cooperation from the Somali community”, I assume you did not mean that ‘time money and cooperation’ should be the burden of the Somali community alone. Obviously this as an issue that is important to all individuals with autism. Autism should be tackled on a global basis, with particular attention now on who is affected by it, and who is not. If certain groups are under represented in the statistics, then they are either being under served, or under studied to see what is different. I don’t see anyone doing that.
John Ruch
Gee Sullivan;
Look the title of of your post. You claim the people you hate are using the Somali children as pawns and claim they are cherry picking.
Where is the cherry picking, they are reporting what everyone else is reporting, high rates of autism including Somali immigrants in Sweden, a study that was not based on a school diagnosis but a diagnosis made by Christopher Gilberg’s group in Sweden.
rajensen088,
Actually, I don’t “claim the people [I] hate” are doing anything. I don’t hate the people using the Somali statistics for political gain. I disagree with their methods, but that is far from personal hate. I have never met them.
The “cherry picking” comes in reporting only the Somalis and ignoring the other ethnicities. Pretty obvious to anyone who read the blog post.
Ah, I’m talking about the high apparent rates of autism in Minneapolis, not the Swedish study. I also didn’t mention the studies that show no autism prevalence variation expected amongst ethnicities. Then again, so did you.
It should be noted that in Sweden the prevalence of autistic disorder plus PDD-NOS for Somali children was found to be 0.7%. It was 0.19% for non-Somalis.
Once again, the prevalence for Somali children was the normal prevalence. It is low for non-Somalis. If you look at the study, they only looked at children who were already diagnosed. Professor Gillberg should’ve noticed this, since he has carried out studies that find a higher prevalence of ASD. There’s one study from Sweden that finds a prevalence of 1.2% among children about the same age as in Gillberg’s study.
When I first heard of the possible link of autism with immigration, I have to admit I was a little gullible, and was considering environmental explanations. After all, such links have been reported since at least the 1970s. In retrospect, all those findings were very much limited.
Of course, there are still questions that need to be answered: Why the higher administrative prevalence? What if children are screened for ASD?
And yes, it is absolutely true that David Kirby and others are using the Somali anomaly for political gain. RAJ is denying the self-evident if he doesn’t think so. I have seen no evidence that Dr. Gillberg, on the other hand, is using the Somali anomaly for political gain.
My name is Idil Abdull and I am the Somali parent that broke this Autism and Somali story in Minnesota by contacting the media, education dept and health dept. I did this after I noticed in every pre-school class of 6 kids, 2-4 were born in MINNESOTA to Somali parents. The notion that these kids are falling behind because they came from a refugee camp in Africa is in-correct and False. They are American born children. 2ndly, I myself grew up in Boston and came here as a child yet my son has autism. Therefore, the other notion of “the mothers were over vaccinated when they came here as refugees and that caused autism is also false”. The bottom line is we don’t know what the real reason for this high rate is. And yes they are medically diagnosed as classic autism. We need to be cautious and wait. We need to ask researchers to take a look at our community and maybe who knows they may just find the missing piece for this autism puzzle. I urge everyone to refrain from just commenting without having actual facts.
thank you and may god heal all of our children regardless of where their parents are from.
Idil,
thank you very much for your insights. As you say there is very little real information about your community. I appreciate that you could share some here.