The Institute on Community Integration at the University of Minnesota released a report in late December on the Minneapolis Somali Autism Spectrum Disorder Prevalence Project. Technical assistance and funding for this project was provided by the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and Autism Speaks. It focused on comparing Somali and non-Somali children in Minneapolis in response to concerns about autism in the Somali community. In 2008, Somali parents and others expressed concern to the Minnesota Department of Health that they believed there was a large number of Somali children with autism in Minneapolis preschool special education compared to the overall percentage of Somali children enrolled in the city’s public schools.
To address this concern the project looked at prevalence, a scientific term describing the number of individuals with a disease or condition among a defined group of people at a specific period in time. The project sought to determine if more Somali children had autism than non-Somali children in Minneapolis in 2010. Both groups of children were seven to nine years. Reviews of medical and school records were used to determine autism. The project adopted a method called the Autism and Developmental Disabilities Monitoring (ADDM) Network used by the CDC. There was impressive cooperation by medical providers, the schools, and the Somali community. There was also oversight by an advisory committee.
So what does the project tell us?
- About 1 in 32 Somali children, ages seven to nine years were identified as having autism.
- Somali and White children were about equally likely to be identified with autism. Somali and White children were more likely to be identified with autism than Black and Hispanic children.
- Somali children with autism were more likely to have an intellectual disability than children with autism in all the other racial and ethnic groups.
- The age at first autism diagnosis was around five years.
Is there a message to our community?
First, the finding that the prevalence of Somali (1 in 32) and White (1 in 36) children was statically equal suggests that there aren’t a higher number of Somali children with autism. Maybe the concern in 2009 was not valid. However, it could mean that access to diagnostic services is very good for both groups. It may really reflect the cohesiveness and knowledge about child development in both White and Somali communities. It is notable that the study looked at seven to nine year olds. The concern expressed in 2009 was focused on children two to five. All of those children came to the Minneapolis Early Childhood Special Education program through referral or parent initiative.
Second, the prevalence of 1 in 32 Somali children is high. It is higher than the national prevalence of 1 in 50 published by the CDC (2011 and 2012 data). The prevalence figures from the CDC in 2008 were 1 in 88. This concern is heightened by the fact that 100% of the Somali children have intellectual disability. Many likely have significant challenges with cognition, communication, and behavior. This report is a call to action by schools, counties and service providers to help Somali families to rear their children with autism.
Third, the study found that most children were diagnosed around the age five. Twenty years ago a national meeting on autism presented research on the powerful results of early intervention. There are reliable diagnostic tools that can be used by 24 months. In spite of the Help Me Grow interagency program of the Minnesota Departments of Health, Human Services, and Education, diagnosis is not early enough for most children. Early intervention services that follow are insufficient. The report offers information for families about first signs and community resources, suggesting the solution to this problem is parent knowledge. But early diagnosis and intervention can only be improved through interagency policies and programs.
Lastly, it is critical to note where children were diagnosed. The Minneapolis Public Schools identified the most children. Health providers only diagnosed 22%. In diverse communities medical diagnosis was even less. This explains why the age of diagnosis was five. It is when children enter kindergarten. Yet we know that early detection and early intervention are critical for families living with autism.
We need physician education and a commitment to early diagnosis at routine check-ups. The excellent information for families in the report highlights the obvious. Parents need information before they seek help. But, this is no longer just a problem of awareness. Our community must develop a coordinated program of diagnosis and early intervention services for all children with autism.