Description of Collaborative Activity: |
Several Institutes and Centers at NIH are providing funds to CDC to support surveillance of Autism Spectrum Disorder (ASD) in select children who live in Minneapolis, with the goal of determining whether children of Somali descent have a higher ASD prevalence. This research initiative originated due to concerns in the Minneapolis community about the unexpected high number of Somali children in preschool programs for children with autism. While that study had a number of limitations, it was an important first step towards understanding autism prevalence in the Somali community. In response to concerns about the number of Somali children with autism living in Minneapolis, the CDC, NIH, and Autism Speaks funded the University of Minnesota through a competitive announcement from the Association of University Centers on Disabilities (AUCD) to estimate the number of children with autism living in Minneapolis and to examine whether autism is more common among Somali children than non-Somali children. The adopted study methods were developed by the CDC and are used by the Autism and Developmental Disabilities Monitoring (ADDM) network. The ADDM network reviews health and special education records to identify school-aged children with autism. Data collected using this method can help explain if certain groups are more likely to be identified with autism than others. The project was initially funded for 1 year to encourage a timely response to community concerns. However, the State of Minnesota did not have an existing autism monitoring system in place, so an infrastructure for autism monitoring needed to be built, which took 8 months. Because building the infrastructure took so much time and resulted in delays, a 1-year cost extension to complete the autism monitoring activities was requested and approved. An important component of the project has been community engagement, including establishing a community advisory board, hiring Somali community facilitators, hiring a Somali leadership liaison, and conducting outreach through community resources and meetings as well as through immigrant media sources. In addition, after hearing the community's concerns about disparities, additional research questions were added that will address potential differences in the level of functioning and service delivery between Somali and non-Somali children. CDC, NIH, and Autism Speaks have monitored the University of Minnesota's efforts throughout the project to ensure adherence to the CDC methodology. The next step plans were to finish the data collection and review and prepare the data for analysis. A communications workgroup was established to prepare a community report that summarizes the findings in an understandable and useful way. Not only will this project help understand how often autism occurs in Somali and non-Somali children in Minneapolis, but results could also promote awareness of autism, help plan and coordinate service delivery, and inform future research and advocacy efforts.
In response to concerns about the number of Somali children with autism living in Minneapolis, the CDC, NIH, and Autism Speaks funded the University of Minnesota through a competitive announcement from the Association of University Centers on Disabilities (AUCD) to estimate the number of children with autism living in Minneapolis and to examine whether autism is more common among Somali children than non-Somali children. The adopted study methods were developed by the CDC and are used by the Autism and Developmental Disabilities Monitoring (ADDM) network. The ADDM network reviews health and special education records to identify school-aged children with autism. Data collected using this method can help explain if certain groups are more likely to be identified with autism than others. The project was initially funded for 1 year to encourage a timely response to community concerns. However, the State of Minnesota did not have an existing autism monitoring system in place, so an infrastructure for autism monitoring needed to be built, which took 8 months. Because building the infrastructure took so much time and resulted in delays, a 1-year cost extension to complete the autism monitoring activities was requested and approved.
An important component of the project has been community engagement, including establishing a community advisory board, hiring Somali community facilitators, hiring a Somali leadership liaison, and conducting outreach through community resources and meetings as well as through immigrant media sources. In addition, after hearing the community's concerns about disparities, additional research questions were added that will address potential differences in the level of functioning and service delivery between Somali and non-Somali children. CDC, NIH, and Autism Speaks have monitored the University of Minnesota's efforts throughout the project to ensure adherence to the CDC methodology. The next step plans were to finish the data collection and review and prepare the data for analysis. A communications workgroup was established to prepare a community report that summarizes the findings in an understandable and useful way.
Not only will this project help understand how often autism occurs in Somali and non-Somali children in Minneapolis, but results could also promote awareness of autism, help plan and coordinate service delivery, and inform future research and advocacy efforts. |
