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Mother's Testimony to the IACC Sparks Rapid Response to Investigate Autism Rates in Somali Families Living in Minnesota

Monday, February 28, 2011

Ms. Idil Abdull spoke with conviction as she addressed the Interagency Autism Coordinating Committee (IACC) in October 2010, "If you want to know the answer to autism, come and study us. This is your gold mine," said the Somali mother of a child with autism and founder of the Somali American Autism Foundation.

Speaking during a public comment period at the October meeting, she testified that autism was "as common as Somali tea" in the Somali community in Minneapolis, Minnesota, sometimes affecting multiple children in a single family. This observation is supported by a 2009 report by the Minnesota Department of Health that found Somali-American children were up to seven times more likely to receive autism services than their peers.

Members of the Interagency Autism Coordinating Committee, a Federal advisory group charged with giving recommendations on the direction of future autism spectrum disorder (ASD) research, reacted quickly to investigate the prevalence of ASD in the Somali community in Minnesota. Working together, several IACC member agencies and organizations -- the Centers for Disease Control and Prevention (CDC), Autism Speaks, and four Institutes from the National Institutes of Health (NIH) -- identified research that could be expanded to investigate the reported clusters of ASD. The partners also identified research necessary to determine the service needs of Somali 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.

The IACC partners will provide financial support through a grant to the Association of University Centers on Disabilities (AUCD) to collect prevalence data using an established surveillance method, such as that employed by CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network. In addition, the project will conduct ASD case verification on a subset of children and work closely with the Minneapolis community in terms of communication and outreach activities to assure the success of the project. AUCD was chosen because of its expertise in developmental disability surveillance and health promotion, rich infrastructure for carrying out such a project, and history of rapid deployment and field response. The effective collaboration that initiated this effort is one of many that have recently resulted from partnerships between members of the IACC.

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The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government.  For more information on the IACC, please visit:

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