Abstract
Parents (n = 11,845) completed the Modified Checklist for Autism in Toddlers (or its latest revision) at pediatric visits. Using sociodemographic predictors of maternal education and race, binary logistic regressions were utilized to examine differences in autism screening, diagnostic evaluation participation rates and outcomes, and reasons for non-participation. Families of lower maternal education and racial minorities exhibited inflated initial screen positive rates and lower participation at Follow-Up, although not at the evaluation. Economic challenges, such as invalid phone numbers, were identified as barriers to reaching these families. Families of higher education and White race were more likely to decline participation in evaluation. Results suggest the need for increased public education about childhood development to enhance awareness, reduce stigma, and streamline screening.
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Notes
The original M-CHAT and the revised M-CHAT-R are referred to together as M-CHAT(-R) throughout this article.
References
Agency for Healthcare Research and Quality (2011). 2010 National Healthcare Disparities Report. Rockville, MD: US Department of Health and Human Services, Agency for Healthcare Research and Quality: AHRQ Publication 11-0005.
Baker, D. W., Parker, R. M., Williams, M. V., Clark, W., & Nurss, J. (1997). The relationship of patient reading ability to self-reported health and use of health services. American Journal of Public Health, 87(6), 1027–1030.
Barton, M., Boorstein, H., Herlihy, L., Dumont-Mathieu, T., & Fein, D. (2012). Toddler ASD symptom interview. Self-published.
Bhasin, T. K., & Schendel, D. (2007). Sociodemographic risk factors for autism in a US metropolitan area. Journal of Autism and Developmental Disorders, 37(4), 667–677.
Bilder, D., Pinborough-Zimmerman, J., Miller, J., & McMahon, W. (2009). Prenatal, perinatal, and neonatal factors associated with autism spectrum disorders. Pediatrics, 123(5), 1293–1300.
Bostock, S., & Steptoe, A. (2012). Association between low functional health literacy and mortality in older adults: Longitudinal cohort study. British Medical Journal, 344, e1602.
Brown, S. A., & Harris, C. L. (1995). A community-based, culturally sensitive education and group-support intervention for Mexican Americans with non-insulin-dependent diabetes: A pilot study of efficacy. Diabetes Educator, 21(3), 203–210.
Centers for Disease Control and Prevention. (2014). Prevalence of autism spectrum disorder among children aged 8 years-Autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Report Surveillance Summaries, 63(2), 1–22.
Chlebowski, C., Robins, D., Barton, M., & Fein, D. (2013). Large scale use of the modified checklist for autism in low-risk toddlers. Pediatrics, 131(4), 1121–1127.
Corkery, E., Palmer, C., Foley, M. E., Schecter, C. B., Frisher, L., & Roman, S. H. (1997). Effect of a bicultural community health worker on completion of diabetes education in a Hispanic population. Diabetes Care, 20(3), 254–257.
Daniel, L., Prue, C., Taylor, M., Thomas, J., & Scales, M. (2009). “Learn the signs. Act early”: A campaign to help every child reach his or her full potential. Public Health, 123, e11–e16.
Division of Birth Defects, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (2014). Learn the signs. Act early. Research and evaluation. Retrieved from http://www.cdc.gov/ncbddd/actearly/about-research.html
Durkin, M. S., Maenner, M. J., Meaney, F. J., et al. (2010). Socioeconomic inequality in the prevalence of autism spectrum disorder: Evidence from a U.S. cross-sectional study. PLoS One, 5(7), 1–8.
Flesch, R. (1948). A new readability yardstick. Journal of Applied Psychology, 32(3), 221–233.
Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental disorders: An update. Journal of Autism and Developmental Disorders, 33(4), 365–382.
Fountain, C., Winter, A., & Bearman, P. (2012). Six developmental trajectories characterize children with autism. Pediatrics, 129(5), 1112–1120.
Glascoe, F. P., Macias, M. M., Wegner, L. M., & Robertshaw, N. S. (2007). Can a broadband developmental-behavioral screening test identify children likely to have autism spectrum disorder? Clinical Pediatrics, 46, 801–805.
Goin-Kochel, R., Mackintosh, V. H., & Myers, B. J. (2006). How many doctors does it take to make an autism spectrum diagnosis? Autism, 10(5), 439–451.
Hix-Small, H., Marks, K., Squires, J., & Nickel, R. (2007). Impact of implementing developmental screening at 12 and 24 months in a pediatric practice. Pediatrics, 120(2), 381–389.
Johnson, C. P., Myers, S. M., & Council on Children with Disabilities. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5), 1183–1215.
Kalb, L., Freedman, B., Foster, C., et al. (2012). Determinants of appointment absenteeism at an outpatient pediatric autism clinic. Journal of Developmental and Behavioral Pediatrics, 33(9), 685–697.
Kalichman, S. C., & Rompa, D. (2000). Functional health literacy is associated with health status and health-related knowledge in people living with HIV-AIDS. Journal of Acquired Immune Deficiency Syndromes, 25(4), 337.
Kincaid, J. P., Fishburne, R. P, Jr, Rogers, R. L., & Chissom, B. S. (1975). Derivation of new readability formulas (Automated Readability Index, Fog Count and Flesch Reading Ease Formula) for Navy enlisted personnel, Research Branch Report 8-75. Millington, TN: Naval Technical Training Command.
Kleinman, J., Robins, D., Ventola, P., et al. (2008). The modified checklist for autism in toddlers: A follow-up study investigating the early detection of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(5), 827–839.
Kogan, M., Strickland, B., Blumber, S., Singh, G., Perrin, J., & van Dyck, P. (2008). A national profile of the health care experiences and family impact on autism spectrum disorder among children in the United States. Pediatrics, 122(6), 1149–1157.
Kuo, A., Etzel, R., Chilton, L., Watson, C., & Gorski, P. (2012). Primary care pediatrics and public health: Meeting the needs of today’s children. American Journal of Public Health, 102(12), 17–23.
Laveist, T. (2005). Disentangling race and socioeconomic status: A key to understanding health inequalities. Journal of Urban Health, 82(2S3), iii26–iii34.
Liptak, G. S., Benzoni, L. B., Mruzek, D. W., et al. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the National Survey of Children’s Health. Journal of Developmental and Behavioral Pediatrics, 29(3), 152–160.
Lord, C., Rutter, M., Divalore, P. C., & Risi, S. (1999). Autism diagnostic observation schedule-WPS edition. Los Angeles, CA: Western Psychological Services.
Lord, C., Rutter, M., & LeCouteur, A. (1994). Autism diagnostic interview-revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24(5), 659–685.
Lorig, K. R., Ritter, P., Stewart, A. L., et al. (2001). Chronic disease self-management program: 2-Year health status and health care utilization outcomes. Medical Care, 39(11), 1217–1223.
Mancuso, C. A., & Rincon, M. (2006). Impact of health literacy on longitudinal asthma outcomes. Journal of General Internal Medicine, 21(8), 813–817.
Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 1795–1802.
Mandell, D. S., Listerud, J., Levy, S. E., & Pinto-Martin, J. A. (2002). Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child and Adolescent Psychiatry, 4, 1447–1453.
Mandell, D., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum diagnosis. Pediatrics, 116(6), 1480–1486.
Mullen, E. M. (1995). Mullen Scales of Early Learning: AGS Edition. Circle Pines, MN: American Guidance Service.
National Center for Education Statistics. (2006). The health literacy of America’s adults: Results from the 2003 National Assessment of Adult Literacy. Washington, DC: Department of Education.
Oliver, M. L., & Shapiro, T. M. (1997). Black wealth, white wealth: A new perspective on racial inequality. New York, NY: Routledge.
Palmer, R. F., Blanchard, S., Jean, C. R., & Mandell, D. S. (2005). School district resources and identification of children with autistic disorder. American Journal of Public Health, 95(1), 125–130.
Pulsifer, M. B., Hoon, A. H., Palmer, F. B., Gopalan, R., & Capute, A. J. (1994). Maternal estimates of developmental age in preschool children. The Journal of Pediatrics, 125, S18–S24.
Radecki, L., Sand-Loud, N., O’Connor, K. G., Sharp, S., & Olson, L. M. (2011). Trends in the use of standardized tools for developmental screening in early childhood: 2002–2009. Pediatrics, 128(1), 14–19.
Reich, S. (2005). What do mothers know? Maternal knowledge of child development. Infant Mental Health Journal, 26(2), 143–156.
Reynolds, C., & Kamphaus, R. (2004). BASC-2: Behavior assessment system for children (2nd ed.). Circle Pines, MN: American Guidance Service.
Robins, D. L. (2008). Screening for autism spectrum disorders in primary care settings. Autism, 12(5), 537–556.
Robins, D., Casagrande, K., Barton, M., Chen, C., Dumont-Mathieu, T., & Fein, D. (2014). Validation of the modified checklist for autism in toddlers-revised with follow-up (M-CHAT-R/F). Pediatrics, 133(1), 37–45.
Robins, D. L., & Dumont-Mathieu, T. (2006). Early screening for autism spectrum disorders: Update on the modified checklist for autism in toddlers and other measures. Journal of Developmental and Behavioral Pediatrics, 27, S111–S119.
Robins, D., Fein, D., & Barton M. (2009). Modified checklist for autism in toddlers, revised with follow-up (M-CHAT-R/F). Self-published.
Robins, D., Fein, D., & Barton, M. (1999a). Modified checklist for autism in toddlers. Self-published.
Robins, D., Fein, D., & Barton, M. (1999b). Modified checklist for autism in toddlers (M-CHAT) follow-up interview. Self-published.
Robins, D. L., Fein, D., Barton, M., & Green, J. (2001). The modified checklist for autism in toddlers: An initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders, 31(2), 131–144.
Rogers, B. T., Booth, L. J., Duffy, L. C., Hassan, M. B., McCormick, P., Snitzer, J., et al. (1992). Parents’ developmental perceptions and expectations for their high-risk infants. Journal of Developmental and Behavioral Pediatrics, 13, 102–107.
Roux, A. M., Herrera, P., Wold, C. M., Dunkle, M. C., Glascoe, F. P., & Shattuck, P. T. (2012). Developmental and autism screening through 2-1-1: Reaching underserved families. American Journal of Preventive Medicine, 43(6), S457–S463.
Sand, N., Silverstein, M., Glascoe, F. P., Gupta, V. B., Tonniges, T. P., & O’Connor, K. G. (2005). Pediatricians’ reported practices regarding developmental screening: Do guidelines work? Do they help? Pediatrics, 116(1), 174–179.
Schillinger, D., Grumbach, K., Piette, J., et al. (2002). Association of health literacy with diabetes outcomes. Journal of the American Medical Association, 288(4), 475–482.
Schopler, E., Reichler, R., DeVellis, R., & Daly, K. (1980). Childhood Autism Rating Scale (CARS) for diagnostic screening and classification of autism. New York: Irvington.
Schopler, E., Van Bourgondien, M., Wellman, G., & Love, S. (2010). Childhood Autism Rating Scale-Second Edition. Los Angeles, CA: Western Psychological Association.
Shattuck, P. T., Durkin, M., Maenner, M., et al. (2009). Timing of identification among children with an autism spectrum disorder: Findings from a population-based surveillance study. Journal of American Academy of Child and Adolescent Psychiatry, 48(5), 474–483.
Shavers, V. L. (2007). Measurement of socioeconomic status in health disparities research. Journal of the National Medical Association, 99(9), 1013–1023.
Sparrow, S., Cicchetti, D., & Balla, D. (2005). Vineland Adaptive Behavior Scales (2nd ed.). Minneapolis, MN: Pearson Assessments.
Strickland, B., Singh, G., Kogan, M., Mann, M., vanDyck, P., & Newacheck, P. (2009). Access to the medical home: New findings from the 2005–2006 National Survey of Children with Special Health Care Needs. Pediatrics, 123(6), 996–1004.
Tamis-Lemonda, C., Chen, L., & Bornstein, M. (1998). Mothers’ knowledge about children’s play and language development: Short-term stability and interrelations. Developmental Psychology, 34(1), 115–124.
Tregnago, M., & Cheak-Zamora, N. (2012). Systematic review of disparities in health care for individuals with autism spectrum disorders in the United States. Research in Autism Spectrum Disorders, 6(3), 1023–1031.
Uebelacker, L. A., Marootian, B. A., Pirraglia, P. A., Primack, J., Tigue, P. M., Haggarty, R., et al. (2012). Barriers and facilitators of treatment for depression in a Latino community: A focus group study. Community Mental Health Journal, 48, 114–126.
United States Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics, Division of Vital Statistics (2013). Natality public-use data 2007–2012, on CDC WONDER Online Database. Retrieved from http://wonder.cdc.gov/natality-current.html
Williams, M. V., Baker, D. W., Honig, E. G., Lee, T. M., & Nowlan, A. (1998a). Inadequate literacy is a barrier to asthma knowledge and self-care. Chest, 114(4), 1008–1015.
Williams, M. V., Baker, D. W., Parker, R. M., & Nurss, J. R. (1998b). Relationship of functional health literacy to patients’ knowledge of their chronic disease. A study of patients with hypertension and diabetes. Archives of Internal Medicine, 158(2), 166–172.
Zarcadoolas, C., Greer, D. S., & Pleasant, A. (2005). Understanding health literacy: An expanded model. Health Promotion International, 20(2), 195–203.
Zepeda, M., & Espinosa, M. (1988). Parental knowledge of children’s behavioral capabilities: A study of low income parents. Hispanic Journal of Behavioral Sciences, 10, 149–159.
Acknowledgments
We would like to thank our financial support sources, a joint Centers for Disease Control & Prevention and Georgia State University seed grant, as well as a research grant from the Eunice Kennedy Shriver National Institute for Child Health and Human Development, R01HD039961. Statistical consultation was provided by Lucy Robinson, Ph.D. (Drexel University) and Wing Yi Chan, Ph.D. (Georgia State University). We would also like to acknowledge the families who participated in the study, as well as the pediatricians who assisted by offering the M-CHAT(-R) questionnaire to their patients. Additionally, we are grateful for the time and effort put forth by the Developmental Neuropsychology Lab research staff involved in data collection for the project at Georgia State University. Data presented in the manuscript are a subset of a larger ongoing research study. Preliminary findings from the research presented in the enclosed manuscript were presented at a regional and international meeting, and have not been published elsewhere.
Conflict of interest
Diana Robins is co-owner of M-CHAT LLC, which licenses use of the M-CHAT in electronic products. However, data used in the current study were collected using the free version of the M-CHAT and no royalties are associated with this study.
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Khowaja, M.K., Hazzard, A.P. & Robins, D.L. Sociodemographic Barriers to Early Detection of Autism: Screening and Evaluation Using the M-CHAT, M-CHAT-R, and Follow-Up. J Autism Dev Disord 45, 1797–1808 (2015). https://doi.org/10.1007/s10803-014-2339-8
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DOI: https://doi.org/10.1007/s10803-014-2339-8