Minneapolis Somali Autism Spectrum Disorder Prevalence Project

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1 Minneapolis Somali Autism Spectrum Disorder Prevalence Project Metro Refugee Health Task Force Tuesday, June 3, 2014 Meeting Joe E. Reichle, PhD Dept. Education Psychology

2 Acknowledgements Community advisors Community partners MDE, DHS, Minneapolis Pubic Schools, charter schools, clinic sources AUCD, CDC, NIH and AS Project staff LEND Fellows

3 What Is Autism Spectrum Disorder? A developmental disability Can result in significant challenges in Social Communication Behavioral Symptoms appear in early childhood Usually lifelong though symptoms change Different way of understanding and interacting

4 Autism Spectrum Disorder Spectrum means each person is affected in different ways and symptoms range from mild to severe. Share common symptoms Differences in how symptoms affect person

5 What Is Prevalence?

6 Why Do We Need to Know How Many Children Have ASD? To have realistic plans to support children with ASD and their families Therapies Trained teachers and clinicians Plan for coordinated service delivery systems

7 Background: MDH investigation 7 Estimated administrative prevalence (AP) (2009) MPS ECSE administrative data for children ages 3-4 for , , Birth cohorts using Minnesota birth certificate data Results: AP Somali > AP non-somali across most assumptions, school years, program types Somali: non-somali AP ratios ranged from 2-7 times greater for Somali children but differences decreased rapidly over the 3 school years AP for Asian, Native American children strikingly low

8 Background: Ongoing community concerns Strong Somali advocacy Concerns regarding numbers & symptom severity of ASD in Somali children Educators: Early intervention, K-12 Professional advocates: PACER, Arc Clinicians Compelling advocacy at IACC

9 Minneapolis ASD Prevalence Project Overview Overall Project Objectives Estimate ASD population prevalence for children ages 7 through 9 years with at least 1 parent a resident of Minneapolis in 2010 Compare ASD prevalence by subgroup to assess differences in population prevalence Engage the Community Conduct Case Verification

10 Project Partners Minnesota Department of Health Provided technical assistance and funding Minneapolis Public Schools Provided access to the educational source records Charter schools Provided access to educational records within charter schools Clinics Provided access to clinical source records

11 Project Funding Jointly funded CDC Additional funding provided by NIH AS Cooperative agreement managed through AUCD Funding period July 1, 2011 to June 30, 2012 University of Minnesota Institute on Community Integration Minnesota Department of Health In kind 7/1/12 to 6/30/13 extension No cost extension to 10/13

12 Initial Research Question Is there a higher prevalence of autism in Somali versus non-somali children who live in Minneapolis?

13 Expanded Research Questions What was the prevalence of ASD among children aged 7 through 9 years in 2010? Was the prevalence of ASD among Somali children aged 7 through 9 years significantly different from non-somali children in 2010? Were children of Somali descent with ASD more likely to be identified at school data sources than clinic data sources compared with children with ASD who were not of Somali descent? Were children of Somali descent more likely to have an ASD classification identified in existing health and school records than children who were not of Somali descent? Were children of Somali descent more likely to be classified with ASD at a later age than children not of Somali descent? Were children with ASD and of Somali descent more likely to have intellectual disability than children with ASD who were not of Somali descent? Did children with ASD of Somali descent have the same degree of severity rated by the clinical reviewer as children with ASD who are not of Somali descent? Did children with ASD of Somali descent have the same distribution of ASD symptoms noted in records as children with ASD who are not of Somali descent?

14 CDC ADDM Network Public Health ASD Surveillance Methodology A retrospective & recordsbased design Identify children meeting age & residency criteria from multiple sources Abstract information from records that contain triggers Detailed descriptions of behaviors, developmental delays, co-occurring conditions; ASD & other eval results; evaluator s summary diagnosis Review records using standardized coding scheme based on DSM-IV- TR to determine a child s surveillance ASD status

15 ADDM Network Current (2010 and 2012) ADDM Network Sites: Alabama, Arizona, Arkansas, Colorado, Georgia/CDC, Maryland, Missouri, New Jersey, North Carolina, South Carolina, Utah, Wisconsin Data Gathering/Reporting Cycle 2010 data recently released 1/68 children have ASD (14.7/1,000) 31% have ID Proportion varied by race/ethnicity (48% black non Hispanic, 38% Hispanic and 25% non Hispanic white Non-Hispanic white children 30% more likely to have ASD than non-hispanic black; and 50% more likely than Hispanic Median age of diagnosis 53 months (4.4 years)

16 Minneapolis Surveillance Data Sources ADDM 2008 Surveillance Minnesota 2010 Surveillance 9 sites: education and health sources Education and health sources 6 sites: health sources * ADDM sites with health only access tend to have lower ASD prevalence estimates, suggesting the importance of including school records in ASD surveillance.

17 Modified ADDM Methodology MN looked specifically at Somali Expanded research questions Age cohort 7-9 year olds MinnLlink data set Used for sensitivity analysis (not yet included) Additional QA checks Oversight Monthly calls with joint funders On site monitoring and review of records and processes by CDC Weekly calls with Coordinator and CDC Community engagement expectations

18 Eligibility Criteria Population Ages 7 through 9 in 2010 (born between 2001 through 2003) One parent/custodial guardian a resident of the City of Minneapolis in ,329 Total 7-9 year olds who met criteria Rationale 4,336 White 4,319 Black (non Somali) 1,176 Hispanic 1,007 Somali 900 Asian/Pacific Islander 375 Native American Base population requirement: 10,000-15,000 children Age range with age 8 as the midpoint 2010 U.S. Census data

19 Limitations Minneapolis only Cannot be generalized Other age groups in Minneapolis Other calendar years Other MN communities US or internationally Did not have 100% case ascertainment so likely an underestimate No information on causation Relies on educational administrative data without confirmation of diagnosis

20 Findings To Date

21 Prevalence Of ASD Among Children Aged 7 Through 9 In 2010 by Race and Ethnicity

22 Prevalence Male and Female

23 Findings: Prevalence About 1 in 32 Somali children aged 7-9 years in 2010 was identified as having ASD in Minneapolis. Somali and White children were about equally likely to be identified with ASD in Minneapolis. Somali and White children were more likely to be identified with ASD than Black and Hispanic children in Minneapolis. The ASD estimates from Minneapolis are higher than most other communities where CDC has counted ASD, especially for Somali and White children. It is difficult to compare the estimates in Minneapolis with the estimates from CDC s tracking system because they come from different points in time. CDC s overall estimate is an average based on 14 diverse communities across the United States whereas these estimates are based on only one urban community.

24 Findings: Prevalence It is unknown why Somali and White children were more likely to be identified with ASD than Black and Hispanic children in Minneapolis. This project was not designed to answer such questions, so future research is needed. The numbers of Native American and Asian children were so low in this project that meaningful conclusions could not be drawn about these children. Males were more likely to be identified in having ASD than females in all racial and ethnic groups in Minneapolis.

25

26 Children With ASD and Intellectual Disability Somali children with ASD were more likely to also have ID than children with ASD in all other racial and ethnic groups in Minneapolis. It is unknown why Somali children with ASD were more likely to have ID than other children with ASD. It is important to note that information about whether or not a child had ID was not available for all children.

27 The Average Age When Children Were First Diagnosed With ASD

28 The Average Age When Children Were First Diagnosed With ASD The average age of the first ASD diagnosis for 7- to -9-year-old children in Minneapolis was around 5 years for Somali, White, Black (non-somali), and Hispanic children. Many children in Minneapolis are not being diagnosed as early as they could be. Children with ASD can be reliably diagnosed around 2 years of age. Further research must be done to understand why children with ASD, especially those who also have intellectual disability, are not getting diagnosed earlier in Minneapolis.

29 Where Children With ASD Were Identified

30 Where Children With ASD Were Identified White, Black (non-somali), and Hispanic children were about as equally likely as Somali children to be identified at school and health sources.

31 Community Findings

32 Community View: Stigma of IDD, Autism, Mental Health No words for autism Regarding mental health only crazy and sane

33 Somali Families Need Information and Access to Services

34 Families and Community Want Cause Answer Vaccination as cause MMR vaccination decline in MN Strong belief and advocacy Divided community with different opinions and beliefs about ASD Families and professionals No cure, no cause

35 Communication and Outreach: Resources and Tools YOU Can Use

36 Community Report Executive Summary Project Overview What scientific methods did we use? What did we find? Community perspective How can information from this project be used by others? What are some important questions to answer? What additional information about autism might be helpful? Where can I get more information? Who helped make this project possible? References

37 Autism Awareness Materials Podcasts (in Somali & Subtitled) What is Autism or Autism Spectrum Disorders? Parent story Current Treatments Learn the Signs Act Early (Translated Materials) Brochure Booklet One page summary Findings What is Autism Who I should talk to

38 Dissemination and Outreach Plans Meetings with partners and advisors Press release Interviews with members of local and national media outlets Somali community specific engagement activities Post release outreach and engagement Engage partners, meet and work with health care clinics and providers, immigrant and refugee providers, state agencies, Somali advocates, and parents

39 Specific Somali Focused Strategies Compile Somali media contact list Press Soomalida Maanta Conduct Interviews with Somali Media Television Somali TV MN Somali Media TV Warsan Times Internet sites Mogodishu Times Hiiraan Online Bartamaha African News Journal Farhio Show List Servs Radio KFAI African American Show Outreach edemocaracy Metro Refugee task force KFAI Somalida Maanta Voice of America Somali Community leader meetings Somali community outreach

40 What Families Can Do With the Results Understand more about ASD regarding when and where children are identified Increase awareness about ASD with friends and family Start a discussion with doctor, other health care provider, early educator or school teacher Talk with local community leaders about need for better awareness, early identification and equity in access to care for all children

41 What Service Providers and Clinicians Can Do With the Results Plan and coordinate service delivery in Minneapolis Promote early identification in Minneapolis Identify where improvements are needed Better know where outreach should be directed

42 What Policymakers and Advocates Can Do With the Results Promote awareness of ASD and bring the community together to address growing needs Develop and refine policies and promote early identification and equity in access so that all children have access to evaluation and treatment Use as an impetus to the creation of a Minneapolis and/or Somali task force on ASD

43 What Researchers Can Do With the Results Inform future research projects Case verification Intervention related to assessment and diagnosis access Access and equity in service delivery for Somali and Non-Somali children Service outcome analyses for Somali and Non-Somali Use as an impetus for the creation of a community research consortium in Minneapolis

44 University of Minnesota Next Steps Continued community engagement Post release activities Conversations about the implications of findings Systems needs (e.g. MDE, DHS, MDH) Practice (e.g. assessment, diagnosis) Research (e.g. on-going surveillance, beyond Mpls) Further Research Additional analyses and technical report release Further analysis on ASD characteristics/symptoms Sensitivity analyses Verification

45 For More Information University of Minnesota Amy Hewitt (Principal Investigator) Anab Gulaid Kristin Hamre

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