NIMH Teams Up to Study ASD Rates in Somali-American Children

There has been a fair amount of discussion in the media and online about the possibility of an autism cluster amongst the Somali-American population in Minneapolis, Minnesota. A report came out last year, Autism Spectrum Disorders Among Preschool Children Participating in the Minneapolis Public Schools Early Childhood Special Education Programs, presenting data on the administrative prevalence of autism in the public schools. They found that, indeed, a higher fraction of Somali-American children were in the autism programs than children of other racial/ethnic backgrounds.

They analyzed the data in a number of ways, but here is one results table:

The administrative prevalence is about 1% in this analysis, which is significantly higher than that for the other subgroups. Many have commented that the Somali-American administrative prevalence is about the same as that for older children in the general population within the Minnesota public school system. This raises the question as to whether the prevalence is actually higher amongst Somali-Americans, or whether it could be that Somali-Americans are identified earlier.

Rather than wait a few years for that question to sort itself out, NIMH, Autism Speaks and the Centers for Disease Control are teaming up to study the situation. They will use the same methodology as used for the CDC’s autism prevalence figures: the Autism and Developmental Disabilities Monitoring (ADDM) Network methods. The ADDM uses a review of medical and educational records, not a direct examination of the children involved. But, this is an established methodology.

Here is the post from the NIMH. (copied in full because, well, it’s the government and therefore public domain):

Members of a Federal Advisory Group on Autism Mobilize in Response to a Mother’s Plea

NIMH, along with three other NIH Institutes, will be supporting a joint effort with the Centers for Disease Control and Prevention (CDC) and Autism Speaks, a private advocacy organization, to investigate reports of elevated prevalence of autism spectrum disorders (ASD) among children born to Somali immigrants living in Minneapolis, Minn.

At the October 2010 meeting of the Interagency Autism Coordinating Committee (IACC), Idil Abdull, a Somali parent and founder of the Somali American Autism Foundation, described the disproportionate numbers of Somali-American children enrolled in preschool ASD special education programs—up to seven times higher than their non-Somali peers, according to a 2009 report by the Minnesota Department of Health. Committee members, which include NIH, CDC, and Autism Speaks, responded immediately by identifying ongoing research that may be expanded to help answer why such a disparity appears to exist, as well as to determine the service needs of children with ASD in Minneapolis and their families.

“This shared effort demonstrates how members of the IACC can respond quickly and cooperatively to an issue brought to the Committee by the public. An increased prevalence of ASD among this specific Somali population would represent both a scientific opportunity and an urgent public health need,” stated Thomas R. Insel, M.D., NIMH Director and chair of the IACC.

With plans to start in early 2011, the three partnering organizations will provide support to the Minnesota Department of Health to collect prevalence data according to the CDC’s established surveillance methods, as used by the Autism and Developmental Disabilities Monitoring (ADDM) Network.

The IACC is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning ASD. In addition to NIMH, the NIH Institutes supporting this research initiative are:

* Eunice Kennedy Shriver National Institute of Child Health & Human Development
* National Institute of Environmental Health Sciences
* National Institute on Minority Health and Health Disparities