Autism among Somalis in Minneapolis, Minnesota

1. Autism among Somalis in Minneapolis, Minnesota Minnesota Department of Health Judy Punyko

2. Background MN Post, July 24, 2008 • "Almost 6% of the district's total enrollment is made up of Somali-speaking students and about 6% of he children in the early childhood and kindergarten special education programs are Somali."

3. Media • "I'm not seeing Asperger syndrome and the full spectrum of autism in Somali chidlren. It is the more classic forms of autism in general; it is the more severe forms of autism that we're seeing in our Somali babies born here."

4. Media • "If they're having more children, many of the siblings also have autism. We have a number of Somali families who have 2 children on the autism spectrum and sometimes more. I've been working to get somebody to look a this and pay attention because this feels too specific to Somalis. It's got to be preventable."

5. Media • "They're given more vaccines than we get, and sometimes they're doubled up. Then their children are given immunizations. In Somalia, their generations have not received these immunizations, and then sudenly they're getting just a wallop of them in the moms and then in the babies. That's certainly a concern that's been expressed to me by the Somali population."

6. Media • ...suggested that differences in the genetic make-up of Africans put them more at risk for developing autism than other immigrant groups..."

7. Media • "Metro-area pediatricians couldn't confirm that there is a higher incidence of autism among Somali children in the Twin Cities. There's the impressions that there's an increasing rate of autism" but there's no conclusive medical data showing disproportionate numbers..."

8. MDH Response • Autism Interest Group • Coordinate staff and develop talking points • Coordinate with community representatives • Needs, questions, etc. • Analytic Study Group • Obtain data and perform data analyses

9. Somali Community Forum • For Somali parents • Physicians, community leaders • Regular & special educators • Related services • Social workers & mental health professionals

10. Forum Content • What is autism? What’s happening in MN? What do we know? • Addressing the stigma • Navigating the system

11. Sample questions

12. Analytic Study Group • Academic, education, medical, epidemiology • Can we do a “quick and dirty” analysis of MPS data using MPS data? • Clusters – Texas sharpshooter problem

13. Challenges • Minneapolis population • Dynamic: refugee and migration • Population estimates vary widely • School attendance • Dynamic enrollment

14. Analyses Administrative prevalence estimates * 3 to 5-year olds * 8-year olds What are the referral patterns to the MPS? How complete are the MPS data?

15. Selection Bias – Child Find Methods • Differential application • Interviews with key staff • Review process reports and evaluation reports • (MN was cited for not identifying enough children previously) • Differential availability and receptivity to messages • Undocumented workers

16. Results and Interpretation • Can these analyses really answer the question? • Under-identification is an issue • What are some best next steps?