2011-02 Surveillance of Autism Spectrum Disorders (ASD) in Select Children who Live in Minneapolis: Do Children of Somali Descent Have a Higher ASD Prevalence?

In 2008, Somali parents and others in the Twin Cities area raised concerns about disproportionately high participation rates of Somali children in a preschool program for children receiving Autism Spectrum Disorder (ASD) special education services. The preschool program in which the Somali children were participating was the Early Childhood Special Education (ECSE) Citywide ASD Classroom Program, operated by the Minneapolis Public Schools (MPS). A particular source of concern was the high percentage of children participating in this program who were Somali, compared with the overall percentage of children who were Somali in the city's public schools. In 2009, the Minnesota Department of Health (MDH) shared the community's concerns about a possible elevation in ASD rates in Somali children, and agreed to assess the occurrence of ASD among preschool-age Somali children in Minneapolis.

Children in the MDH analysis were those who participated in the MPS ASD-related special education programs and had a primary, secondary, or tertiary ASD disability. Because it was not possible to link children who were identified using MPS administrative data with their birth certificate data, four different sets of assumptions were used to determine which children should be included in the denominator, based on the birthplace of the child and school district residency of the child. Children in the denominator were counted as Somali if their mothers were born in Somalia. Results found that the administrative ASD prevalence estimates were significantly higher for Somali children compared to non-Somali children across most analysis assumptions, school years, and ASD program types. However, these prevalence ratios decreased markedly over the 3-year period, suggesting that the difference in administrative prevalence between Somali children relative to non-Somali children was decreasing with time. Additional information on 2009 MDH study methods and findings can be found at:http://www.health.state.mn.us/ommh/projects/autism/report090331.pdf.

In October 2010, the Interagency Autism Coordinating Committee (IACC) requested that the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and Autism Speaks support activities to explore the prevalence of ASDs among children in Minneapolis. Thus, the goal of this project is to determine the ASD prevalence among a defined group of children in Minneapolis and whether some children, such as those of Somali decent, have a higher ASD prevalence compared to children from other racial and ethnic groups. Results from this activity are not intended to be generalizable to other populations. The specific Minneapolis population investigated in this project should include at least 10,000 to 15,000 children in order to achieve stable prevalence estimates (assuming 1% ASD prevalence). Applicants should consider ways to define the study population in order to meet this requirement (e.g., varying the geographic area investigated, focusing on children in a range of ages rather than one particular age, or focusing on children of one particular age at time of ASD ascertainment who are from multiple birth years). Applicants should also consider how their methods can compare to surveillance methods used by other U.S. sites who participate in the Autism and Developmental Disabilities Monitoring (ADDM) network, such that the prevalence estimates obtained through this project can be assessed in the context of prevalence estimates from other U.S. populations.

Briefly, the ADDM surveillance methodology is based on screening and abstraction of records at multiple clinic and education sources that provide ASD evaluation services for children within a specified population. When possible, agreements to access records are based on institutional rather than individual consent. Children who have certain International Classification of Disease (ICD) codes or educational exceptionality codes in their records are first screened for demographic eligibility, which is defined by birth year and current residency. For children meeting demographic eligibility, clinic and/or education records are further screened for behavioral or diagnostic ASD-related triggers. If a trigger is identified, the child's records are fully abstracted and then reviewed by a trained clinician using a coding scheme based on the Diagnostic and Statistical Manual for Mental Disorders-IV-Text Revision (DSM-IV-TR) criteria for the ASDs. ASD surveillance case status is based on the results of this coding process.  Additional information on ADDM surveillance methods and findings can be found at: http://www.cdc.gov/mmwr/pdf/ss/ss5601.pdf and http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5810a1.htm.

Successful applicants should be able to develop partnerships with clinic and education sources to access service records and the MDH to access birth records for the purpose of public health surveillance. It is expected that this project will be determined a surveillance activity rather than a research activity.  A CDC research determination will be forwarded to the grant recipient who can use the determination to examine whether an exempt Internal Review Board (IRB) status can be obtained. 



Study Focus (if applicable):


In your own words, what are the goals and specific topics the CDC scientists would like the LOIs to address.


The purpose of this project is to determine the ASD prevalence among a defined group of children in Minneapolis and whether some children, such as Somali children, have a higher ASD prevalence than children of other racial and ethnic groups. The grant recipient is encouraged to consider ADDM surveillance methods for this project. We prefer the project involve a clinical evaluation of a sample of children identified for ASD surveillance to verify final case status.  Thus, this project is intended to accomplish the following outcomes:

•·         Define a population of Minneapolis children feasible to  ascertain ASD prevalence,

•·         Estimate the  prevalence of ASDs among children in the Minneapolis population, 

•·         Determine whether Somali children have a higher estimated ASD prevalence than children from other racial and ethnic groups, and 

•·         Verify final case status in a sample of children identified from ASD surveillance activities. 


Evaluation Criteria:


What components are critical to the evaluation of this RTOI?


Successful applicants must include a detailed description of the process for:

  • Identifying education and clinic data sources in Minneapolis (e.g., sources who commonly evaluate and treat/serve children with ASDs and related conditions),
  • Partnering with clinic and education data sources in Minneapolis to obtain access to records (including identifiable information to be able to link to birth certificate records),
  • Partnering with the MDH to obtain access to birth certificate records,
  • Defining the population denominator, including population denominators grouped by age, sex, race and ethnicity,
  • Addressing data cleaning, storage, management, confidentiality, and privacy issues,
  • Developing a surveillance method comparable other U.S. population-based surveillance sites, such as those who participate in the ADDM network, and defining ASD case status,
  • Conducting appropriate epidemiologic analyses to estimate prevalence overall and within subgroups,
  • Communicating with the public about project goals, activities, and findings, and
  • Identifying potential challenges and appropriate measures for dealing with these challenges.


Successful applicants must also:

  • Identify key staff and describe their project roles and responsibilities,
  • Include a detailed project timeline for the 12-month project, and
  • Include a preliminary budget for the 12-month project.


Preference will be given to applicants who:

  • Demonstrate experience in the topic area (i.e., ASDs) and methods (i.e., population-based surveillance),
  • Demonstrate support from agencies, groups, and other collaborators (e.g., letters of support from MPS and clinic sources who commonly evaluate and treat children with ASDs and related conditions),
  • Have previous experience with successfully completed projects with similar design, and
  • Demonstrate appropriate staffing for project oversight and coordination, epidemiologic support and analysis, data collection and review, and data management.