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Minnesota Investigates Autism in Somali Children

Crime_sceneMinnesota health officials are examining a "possible surge" in autism cases among Somali immigrant children in the state, the Minneapolis Star Tribune reports. In Minneapolis, 3.6% of Somali immigrant students were in autism-related programs as of July, about twice the district average. In 2007, Somali children made up 6% of the city's school population and 14 of the 81 children, or 17%, in early childhood education autism programs in Minneapolis. The "numbers have been creeping up for several years, especially among young children," the Star Tribune reports.

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Terri Lewis

Amanda,

As a starting point, go to www.generationrescue.org and find a Rescue Angel. Just go to the home page, click on Recovery Community, and look for someone close to you--there is help available in all 50 states and in dozens of countries besides the U.S.

Terri Lewis

amanda

I'm a single mother and my son is 5 years old. I'm trying so so hard to find the right help for him, also his father is from Somalia. He seemed like a normal infant to a point but as a toddler in alot of aspects he just stopped developing. I live in northern MN and I can't understand why I'm fighting so hard to get the basic services for him??

Anne B. Harrington

Another Perspective on Autism in the Somali Community in Minneapolis

I apologize for the length and for how long it has taken me to write this but I am writing this in response to the many reactions that the recent forum on “Developmental Delays and Autism in the Somali Community” on November 15 in Minneapolis, MN has ignited and my sense of responsibility to the Minneapolis Somali community and my colleagues in the many agencies that participated in the forum. There appear to be many misperceptions about the intent as well as the intended content of this.

The forum was the culmination of months of planning and efforts by a multitude of Minnesota professionals from state, public and private agencies, as well as parents and professionals from the Somali community. The purpose of this forum, as Nancy Hokkanen correctly stated in her article was; “to raise awareness in the Somali community about developmental delays in children with specific emphasis on autism, and engaging the community.” This is a very complex issue and the forum was one of many steps that are being taken to address the concern regarding autism in our Somali community. I am concerned that there are those who wish to take this extremely complex issue in a singular direction without understanding the complexity of the issue of identification and treatment of autism in this relatively new immigrant population in MN, nor the intent of the forum.
My sense of responsibility to the Somali community comes in part as one of the people to initially raise the concern regarding what I was seeing as a significant and growing number of Somali children with autism within the Minneapolis Schools ECSE Autism program. I have been a special educator in the Minneapolis Schools ECSE program for the past 21 years and have been in a unique position to observe changes in the demographic make-up of children referred to our program. As the coordinator of the ECSE Autism program for the past 8 years I have seen a dramatic increase in the number of children across demographic groups referred for an educational assessment for autism and in particular our Somali community. Our Somali parents and community are seeing this as well, however the actual data on Somali children with autism is limited and therefore unfortunately no factual conclusions can currently be drawn from this data. I am very concerned that individuals may subjectively interpret or misuse the limited data that is available and attempt to draw conclusions when the Minneapolis numbers only provide a tiny piece of the puzzle.
I am also writing out of concern for the misinterpretation of the intent and overall purpose of the forum and possible exploitation of this venue and the vulnerable Somali parents by a few individuals whose intent is to focus on the singular issue of the possible autism/ immunization link. As a parent of a child with autism I understand the sense of urgency and the frustration with the lack of data and research to support or deny the connection of factors regarding the cause of ASD when we know personally what we have seen or experienced in our babies and our communities. I also agree that the questions that were raised at the forum regarding vaccines and how they have been introduced into the Somali community and their possible impact on Somali babies were not adequately addressed. This clearly remains a critical question that in my opinion cannot be discounted, and more needs to be explored regarding this issue, along with many other factors unique to the Somali community. I do believe that we must proceed with caution when speculating about the possible causes of autism in the Minneapolis Somali community and also with sensitivity to the history, values and expectations of the culture of the community we are addressing.
I am also concerned that my words have been misquoted and misinterpreted by others and the apparent misperceptions regarding my role at this forum. To clarify; I was asked to speak at this particular forum to inform Somali parents and the community not about the limited demographic data that I had already provided to the media earlier this Spring, but to share about two new resources that I had played a significant role in establishing for families here in our community; The P.L.A.Y Project and the “Somali Autism Discovery Series” beginning in January of 2009 and co-sponsored by Minneapolis Public Schools and the Autism Society of MN, neither of which were mentioned by Ms. Dachel in her article in the Age of Autism (Nov. 20). Ms. Dachel also significantly misquoted me as saying; it is “reassuring to see that the rise in autism in MN was the same as the rest of the country”. A rise in autism is never reassuring and to my knowledge the CDC data indicates that MN seems to be higher than most of the US in numbers of children with autism (1/89). The misquote may have been a result of her misunderstanding of what I did say and what was behind it. Having worked with the Somali community for a number of years I am aware that there is a great deal of mistrust within the Somali community, including the perception that their children have been specifically targeted to “get autism”, preventing many of these families from accessing critical services for their children. The statement that I did actually make at the forum, referred to this misperception that their children are being specifically singled out for autism. I was speaking directly to the Somali audience to help them understand this when I said “autism does not discriminate regarding culture, ethnicity, language and socio-economic status and does not selectively “target” specific groups of people or children but unfortunately can be seen increasingly in all children across the United States”, something of which I am gravely concerned.
The first step for our city and state was to acknowledge that there is in fact an issue regarding autism in our Somali community and I believe we have accomplished this. I am grateful to Huda Farah, for the enormous undertaking of spearheading and coordinating this forum, and Idil Abdulahi and all of the many Somali parents and community members for ensuring that the Somali voices are being heard. The Somali forum provided one of many steps that are now being taken to address the issue of autism in our Somali community. It was gratifying to see the Commissioner of Health and many others from the MN Departments of Health, Education and Human Services and the medical community at the forum. Their presence and engagement at the forum, I believe demonstrated that they are taking the issue of autism in our Somali community seriously. As a result of intense multiple efforts, a variety of state and local agencies and individuals in MN are now working collaboratively and diligently to address the issues of access to resources for the existing children and families as well as to develop an accurate statewide data-base that may lead to new directions and answers.
I don’t believe we can afford to be singularly focused or seek immediate solutions if we truly want to understand cause and address and ultimately prevent a complex disorder such as autism but I am an optimist and am hopeful that through multiple, focused, collaborative efforts and with open communication and open minds by the many that are needed, we will one day not only find the cause but the cure for autism. In this “age of autism” my hope is that we will unite as parents of children with autism, as providers of services, as researchers, and as state and federal entities, leaving no stone unturned, until access to proven treatment is provided for all children with autism and until to there is proven cause, cure and ultimate prevention of this complex disorder.

Anne Harrington lives in Minneapolis and is an Autism Consultant and Specialist now in private practice. Anne is also the adoptive parent of a teen-age son with Down Syndrome and Autism.

deeqa

Have they looked at the home life of these children. Most of these children live in small appartments, no palace to play. And I have to say this, most somali mothers that I have seen do not take there children to the park to play. Some of these children do not know how to act in public, really they do not have socail skills; to play and share with other children. I am thinking these could be a behavior promlems as well.

kat23

Sunscreen??!!
Oh sheesh, now I have heard it all.

mak

hi all
take a look at this earlier report of the same story
it has the interesting quotes


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

http://wcco.com/specialreports/somali.community.autism.2.780309.html

John Stone

At 3.6% were are only just outside Renee Jenkins, AAP president's, range for children "with these defects", and this is only double the local average - a horrifying 1.8% (and presumably about 3% of boys).

This is the false idol of public health.

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