Comprehensive Database for Autism Spectrum Disorder Rates. in Nebraska Report to the Autism Action Partnership

Transcription

1 Comprehensive Database for Autism Spectrum Disorder Rates in Nebraska Report to the Autism Action Partnership Omaha, Nebraska January, 2016 Prepared by The Center for Applied Psychological Services Psychology Department University of Nebraska at Omaha Project Supervisors: Dr. Lisa Kelly-Vance Dr. Joseph Allen Project Co-Director: Michael Yoerger Project Analysts: Emily Ramsey Olivia Rosol

2 AAP-CAPS Project Update January 2016 PSYCHOLOGY DEPARTMENT Scope and Purpose The rates of Autism Spectrum Disorder (ASD) in Nebraska are estimated from CDC statistics and may not accurately reflect the number of individuals diagnosed with ASD in Nebraska. The intent of this project is for the Center for Applied Psychological Services (CAPS) at UNO to analyze data from both the Department of Education and a medical survey to determine the prevalence of ASD in Nebraska. Prevalence by Age Two data sources were combined to formulate the ASD prevalence rate for individuals ages 3 to 18 years. First, data from the Department of Education showed there were 2,947 children ages 3-18 in 2014 with an educational diagnosis of ASD in Nebraska. Second, data were collected from an online survey from parents of children with Autism Spectrum Disorder (ASD) in December 2015 (N = 260). Using the sample statistics and parameters, we accounted for individuals with medical diagnosis of ASD. Thus, based on the number of educational diagnoses, the ratio of educational to medical diagnoses in our sample, and the population of Nebraska for individuals age 3 to 18 years, the Nebraska ASD prevalence rate is 1 in 112 children. Next, data was analyzed to determine the prevalence of ASD by age, which can be seen in the graph below. Prevalence rates were the lowest in individuals ages 3 to 5 with a rate of 4.8 per 1,000 children. This is expected as many children under age 9 may receive a diagnosis of Developmental Delay instead of ASD. The highest rates are shown for individuals ages 12 to 17 with a rate of 10.5 per 1,000 children. Appendix 1 contains a flyer that can be used for the dissemination of the Nebraska ASD prevalence rate. Prevalence of ASD in NE (Per 1,000) by Age Prevalence per 1,000 Children * 4.8 Age 3-5 Age 6-11 Age Age 3-18 *Represents the Overall Prevalence of ASD in the State of Nebraska

3 Demographics of Participants There were a total of 129 male participants and 25 female participants. An analysis of prevalence rates by gender showed that males are five times more likely to be diagnosed with ASD compared to females. This is similar to the CDC study which found that males are 4.5 times more likely to be diagnosed with ASD than females. The age of participants varied with a lower participation rate of children ages birth to 2 and 19 to 21. Because of the lower participation of this age group, overall prevalence rates were computed for individuals ages 3-18 (described in the previous section). An analysis was also conducted to determine the ethnicity of participants. The majority of participants (91.6%) are Caucasian/ European American while only 1.3% of the population is Asian/ Pacific Islander. The comparison of the succeeding graphs shows the ethnicity of this sample is not representative of the Nebraska population. Future prevalence estimates need to include a more representative sample of participants by ethnicity. Refer to the graphs below for more detailed information. Ethnicity by Percentage of Child Survey Population Ethnicity by Percentage of Nebraska Child Population African American Asian/ Pacific Islander Caucasian/ European American Latino, Hispanic, or Chicano Native American African American Asian/ Pacific Islander Caucasian/ European American Latino, Hispanic, or Chicano Native American 91.6 Other 71.0 Other Prevalence by location An analysis was conducted to determine where families of individuals with ASD are residing within the state of Nebraska. The greatest percentage (6.4%) of individuals with ASD are residing in the La Platte, Offutt, and Bellevue areas. This is interesting, as military insurance agencies have been known to have better insurance coverage for individuals with ASD. Approximately 5.2% of participants are living in the Boys Town area. ASD prevalence rates were lower in the rural communities, which may be expected as these individuals may not have access to facilities that diagnose ASD. An image of the location of participants by zip code is shown below.

4 More detailed location information with an interactive map can be found on the following website. Prevalence Comparison to CDC Prevalence rates from this analysis were compared to the results of the most recent CDC study. The CDC used a systematic record review method which involved reviewing health and special education records to identify children with ASD. The subsequent graph shows the number of individuals diagnosed with ASD in each state analyzed by the CDC. The CDC found an overall prevalence rate of 1 in 68. Prevalence rates ranged by state from 1 in 175 to 1 in 46. The prevalence rate of 8 year-olds in this study was 1 in 98. This rate falls within the range of prevalence rates estimated by the CDC in 2010.

5 2010 Prevalence Rates for 8 year olds per single child ASD Rates per Single Child Possible explanations as to why this prevalence rate differs from other estimates: 1. The surveillance sites in other estimates (e.g., CDC) are not necessarily representative of Nebraska. 2. Other estimates (e.g., CDC) only assess a subset of individuals (e.g., 4 and 8 year olds). 3. In the past, many insurance agencies did not cover treatment services for individuals with ASD in Nebraska. This could increase the likelihood that families relocated to other states to receive services for their children. 4. There may be challenges in diagnosing ASD in some parts of the state. 5. The way individuals received a diagnosis in Nebraska differs from the process used in the CDC analysis. Summary Data from the Department of Education and a parent-report medical survey were analyzed to determine the ASD prevalence rates in Nebraska. The overall prevalence rate for individuals ages 3 to 18 is 1 in 112. The prevalence rate of 8 year-olds in Nebraska falls within the prevalence ranges published in the 2010 CDC study. Prevalence by gender was also consistent with the CDC study with a 5 to 1 male to female ratio. Further analyses of the medical survey data will be conducted to understand the types of services families are receiving and the challenges that they face in receiving ASD related services.

6 Action Plan for the Project for Autism Database The PAD team will further analyze data collected from the medical survey. Examples include the following: 1. What do families like about ASD related services both in the school and outside of the school setting? 2. What challenges do families experience in obtaining services both in the school and outside of the school? 3. How far are families traveling to receive ASD related services? 4. What additional services are necessary for individuals with ASD to reach their full potential? 5. Do individuals in urban areas receive more services than individuals living in rural areas?

7 Appendix 1 Autism Spectrum Disorder Prevalence Rate for Nebraska 1 in 112 How the prevalence rate was computed: Two data sources were combined to formulate the prevalence rate for individuals ages 3 to 18 years. First, data from the Department of Education showed there were 2,947 children ages 3-18 in 2014 with an educational diagnosis of ASD in Nebraska. Second, data were collected from an online survey from parents of children with Autism Spectrum Disorder (ASD) in December 2015 (N = 260). Using the sample statistics and parameters, we accounted for individuals with medical diagnosis of ASD. Thus, based on the number of educational diagnoses, the ratio of educational to medical diagnoses in our sample, and the population of Nebraska for individuals age 3 to 18 years, the Nebraska ASD prevalence rate is 1 in 112 children. Possible explanations as to why this prevalence rate differs from other estimates: 1. The surveillance sites in other estimates (e.g., CDC) are not necessarily representative of Nebraska. 2. Other estimates (e.g., CDC) only assess a subset of individuals (e.g., 4 and 8 year olds). The prevalence rate provided here includes all individuals ages 3 to 18 years. 3. In the past, many insurance agencies did not cover treatment services for individuals with ASD in Nebraska. This could increase the likelihood that families relocated to other states to receive services for their children. 4. There may be challenges in diagnosing ASD in some parts of the state. 5. The way individuals received a diagnosis in Nebraska differs from the process used in the CDC analysis.