Advertisement

Journal of Autism and Developmental Disorders

, Volume 48, Issue 2, pp 361–376 | Cite as

Parental Action and Referral Patterns in Spatial Clusters of Childhood Autism Spectrum Disorder

  • David Schelly
  • Patricia Jiménez González
  • Pedro J. Solís
Original Paper

Abstract

Sociodemographic factors have long been associated with disparities in autism spectrum disorder (ASD) diagnosis. Studies that identified spatial clustering of cases have suggested the importance of information about ASD moving through social networks of parents. Yet there is no direct evidence of this mechanism. This study explores the help-seeking behaviors and referral pathways of parents of diagnosed children in Costa Rica, one of two countries in which spatial clusters of cases have been identified. We interviewed the parents of 54 diagnosed children and focused on social network connections that influenced parents’ help seeking and referral pathways that led to assessment. Spatial clusters of cases appear to be a result of seeking private rather than public care, and private clinics are more likely to refer cases to the diagnosing hospital. The referring clinic rather than information spread appears to explain the disparities.

Keywords

Autism spectrum disorder Diagnostic disparities Help-seeking behavior Social networks Healthcare Physician referral 

Notes

Author Contributions

This research was part of DS’s dissertation at the University of Wisconsin. PJG was the institutional sponsor at the HNN. PJS participated in data collection and interpretation. All authors read and approved the final manuscript.

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

References

  1. Aronson, B. (2016). Peer influence as a potential magnifier of ADHD diagnosis. Social Science & Medicine, 168, 111–119.CrossRefGoogle Scholar
  2. Baxter, A. J., Brugha, T. S., Erskine, H. E., Scheurer, R. W., Vos, T., & Scott, J. G. (2015). The epidemiology and global burden of autism spectrum disorders. Psychological Medicine, 45(3), 601–613.CrossRefPubMedGoogle Scholar
  3. Berkman, L. F., Glass, T., Brissette, I., & Seeman, T. E. (2000). From social integration to health: Durkheim in the new millennium. Social Science & Medicine, 51(6), 843–857.CrossRefGoogle Scholar
  4. Bermúdez, J. M., Kirkpatrick, D. R., Hecker, L., & Torres-Robles, C. (2010). Describing Latinos families and their help-seeking attitudes: Challenging the family therapy literature. Contemporary Family Therapy, 32(2), 155–172.CrossRefGoogle Scholar
  5. Birkel, R. C., & Reppucci, N. D. (1983). Social networks, information-seeking, and utilization of services. American Journal of Community Psychology, 11(2), 185–205.CrossRefPubMedGoogle Scholar
  6. Blacher, J., Cohen, S. R., & Azad, G. (2014). In the eye of the beholder: Reports of autism symptoms by Anglo and Latino mothers. Research in Autism Spectrum Disorders, 8(12), 1648–1656.CrossRefGoogle Scholar
  7. Boulter, E., & Rickwood, D. (2013). Parents’ experience of seeking help for children with mental health problems. Advances in Mental Health: Promotion, Prevention and Early Intervention, 11(2), 131–142.CrossRefGoogle Scholar
  8. Brandes, U., & Wagner, D. (2004). Analysis and visualization of social networks. In M. Jünger & P. Mutzel (Eds.), Graph drawing software (pp. 321–340). Berlin: Springer.CrossRefGoogle Scholar
  9. Cercone, J., & Jimenez, J. P. (2008). Costa Rica: ‘Good practice’ in expanding health care coverage. Lessons from reforms in low- and middle-income countries. In P. E. Gottret, G. J. Schieber & H. R. Waters (Eds.), Good practices in health financing: Lessons from reforms in low- and middle-income countries (pp. 183–226). Washington, DC: The World Bank.Google Scholar
  10. Cercone, J., Pinder, E., Jimenez, Pacheco, J., & Briceno, R. (2010). Impact of health insurance on access, use, and health status in Costa Rica. In M.-L. Escobar, C. C. Griffin & R. P. Shaw (Eds.), The impact of health insurance in low- and middle-income countries (pp. 89–105). Washington, DC: Brookings Institution Press.Google Scholar
  11. Chen, C.-Y., Liu, C.-Y., Su, W.-C., Huang, S.-L., & Lin, K.-M. (2008). Urbanicity-related variation in help-seeking and services utilization among preschool-age children with autism in Taiwan. Journal of Autism and Developmental Disorders, 38(3), 489–497.CrossRefPubMedGoogle Scholar
  12. Clark, M. A. (2011). The DR-CAFTA and the Costa Rican health sector: A push toward privatization? The Latin Americanist, 55(3), 3–23.CrossRefGoogle Scholar
  13. Colbert, A. M., Webber, J., & Graham, R. (2016). Factors that influence autism knowledge in Hispanic cultures: A pilot study. Journal of Racial and Ethnic Health Disparities, 4, 156–164.CrossRefPubMedGoogle Scholar
  14. Deri, C. (2005). Social networks and health service utilization. Journal of Health Economics, 24, 1076–1107.CrossRefPubMedGoogle Scholar
  15. Dickerson, A. S., Rahbar, M. H., Pearson, D. A., Kirby, R. S., Bakian, A. V., Bilder, D. A., et al. (2017). Autism spectrum disorder reporting in lower socioeconomic neighborhoods. Autism, 21(4), 470–480.CrossRefPubMedGoogle Scholar
  16. Dulcan, M. K., Costello, E. J., Costello, A. J., Edelbrock, C., Brent, D., & Janiszewski, S. (1990). The pediatrician as gatekeeper to mental health care for children: Do parents’ concerns open the gate? Journal of the American Academy of Child & Adolescent Psychiatry, 29(3), 453–458.CrossRefGoogle Scholar
  17. Emerson, N. D., Morrell, H. E. R., & Neece, C. (2016). Predictors of age of diagnosis for children with autism spectrum disorder: The role of a consistent source of medical care, race, and condition severity. Journal of Autism and Developmental Disorders, 46(1), 127–138.CrossRefPubMedGoogle Scholar
  18. Fountain, C., King, M. D., & Bearman, P. S. (2011). Age of diagnosis for autism: Individual and community factors across 10 birth cohorts. Journal of Epidemiology & Community Health, 65(6), 503–510.CrossRefGoogle Scholar
  19. Freidson, E. (1960). Client control and medical practice. American Journal of Sociology, 65(4), 374–382.CrossRefGoogle Scholar
  20. Freidson, E. (1961). Patients’ views of medical practice. New York: Russell Sage Foundation.Google Scholar
  21. Frith, U., & Soares, I. (1993). Research into earliest detectable signs of autism: What parents say. Communication, 27, 17–18.Google Scholar
  22. Gerdes, A. C., Lawton, K. E., Haack, L. M., & Schneider, B. W. (2014). Latino parental help seeking for childhood ADHD. Administration and Policy in Mental Health and Mental Health Services Research, 41(4), 503–513.CrossRefPubMedGoogle Scholar
  23. Gernsbacher, M. A., Dawson, M., & Goldsmith, H. H. (2005). Three reasons not to believe in an autism epidemic. Current Directions in Psychological Science, 14(2), 55–58.CrossRefPubMedPubMedCentralGoogle Scholar
  24. Grinker, R. R. (2007). Unstrange minds: Remapping the world of autism. New York: Basic Books.Google Scholar
  25. Hillemeier, M. M., Foster, E. M., Heinrichs, B., & Heier, B. (2007). Racial differences in parental reports of attention-deficit/hyperactivity disorder behaviors. Journal of Developmental & Behavioral Pediatrics, 28(5), 353–361.CrossRefGoogle Scholar
  26. Horwitz, A. (1977). Social networks and pathways to psychiatric treatment. Social Forces, 56(1), 86–105.CrossRefGoogle Scholar
  27. Horwitz, S., Leaf, P., & Leventhal, J. (1998). Identification of psychosocial problems in pediatric primary care: Do family attitudes make a difference? Archives of Pediatric and Adolescent Medicine, 152(4), 367–371.CrossRefGoogle Scholar
  28. Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: Findings from a survey of 770 families. Developmental Medicine & Child Neurology, 41(12), 834–839.CrossRefGoogle Scholar
  29. Iland, E. D., Weiner, I., & Murawski, W. W. (2012). Obstacles faced by Latina mothers of children with autism. Californian Journal of Health Promotion, 10(2), 25–36.Google Scholar
  30. Kalkbrenner, A. E., Daniels, J. L., Emch, M., Morrissey, J., Poole, C., & Chen, J.-C. (2011). Geographic access to health services and diagnosis with an autism spectrum disorder. Annals of Epidemiology, 21(4), 304–310.CrossRefPubMedPubMedCentralGoogle Scholar
  31. Keyes, K. M., Susser, E., Cheslack-Postava, K., Fountain, C., Liu, K., & Bearman, P. S. (2012). Cohort effects explain the increase in autism diagnosis among children born from 1992 to 2003 in California. International Journal of Epidemiology, 41(2), 495–503.CrossRefPubMedGoogle Scholar
  32. Kim, Y. S., Leventhal, B. L., Koh, Y.-J., Fombonne, E., Laska, E., Lim, E.-C., et al. (2011). Prevalence of autism spectrum disorders in a total population sample. American Journal of Psychiatry, 168(9), 904–912.CrossRefPubMedGoogle Scholar
  33. King, M. D., & Bearman, P. S. (2011). Socioeconomic status and the increased prevalence of autism in California. American Sociological Review, 76(2), 320–346.CrossRefPubMedPubMedCentralGoogle Scholar
  34. Lauritsen, M. B., Astrup, A., Pedersen, C. B., Obel, C., Schendel, D. E., Schieve, L., et al. (2014). Urbanicity and autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(2), 394–404.CrossRefPubMedPubMedCentralGoogle Scholar
  35. Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., 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 & Behavioral Pediatrics, 29(3), 152–160.CrossRefGoogle Scholar
  36. Liu, K., & Bearman, P. S. (2015). Focal points, endogenous processes, and exogenous shocks in the autism epidemic. Sociological Methods & Research, 44(2), 272–305.CrossRefGoogle Scholar
  37. Liu, K.-Y., King, M., & Bearman, P. S. (2010). Social influence and the autism epidemic. American Journal of Sociology, 115(5), 1387–1434.CrossRefGoogle Scholar
  38. McInnes, L. A., Jiménez González, P., Manghi, E. R., Esquivel, M., Monge, S., Fallas Delgado, M., et al. (2005). A genetic study of autism in Costa Rica: Multiple variables affecting IQ scores observed in a preliminary sample of autistic cases. BMC Psychiatry, 5, 5–15. Google Scholar
  39. Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51(3), 141–153.CrossRefPubMedGoogle Scholar
  40. Mazumdar, S., King, M., Liu, K.-Y., Zerubavel, N., & Bearman, P. (2010). The spatial structure of autism in California, 1993–2001. Health & Place, 16(3), 539–546.CrossRefGoogle Scholar
  41. Mazumdar, S., Winter, A., Liu, K.-Y., & Bearman, P. (2013). Spatial clusters of autism births and diagnoses point to contextual drivers of increased prevalence. Social Science & Medicine, 95, 87–96.CrossRefGoogle Scholar
  42. McKinlay, J. B. (1973). Social networks, lay consultation and help-seeking behavior. Social Forces, 51(3), 275–292.CrossRefGoogle Scholar
  43. McPherson, M., Smith-Lovin, L., & Cook, J. M. (2001). Birds of a feather: Homophily in social networks. Annual Review of Sociology, 27, 415–444.CrossRefGoogle Scholar
  44. Muiser, J., & Rafael, J. (2012). Health care financing and social protection in Latin America: The design of the Costa Rican health financing system in view of financial risk protection. San José: University of Costa Rica.Google Scholar
  45. Mundt, M. P., Merchen, L., & Zakletskaia, L. (2012). Peer selection and influence effects on adolescent alcohol use: A stochastic actor-based model. BMC Pediatrics, 12(1), 115–124.CrossRefPubMedPubMedCentralGoogle Scholar
  46. Ortmann, M., Klimenta, M., & Brandes, U. (2016). A sparse stress model. In Y. Hu & M. Nollenburg (Eds.), Graph drawing and network visualization (pp. 18–32). Cham: Springer.CrossRefGoogle Scholar
  47. Pachter, L. M., & Dworkin, P. H. (1997). Maternal expectations about normal child development in 4 cultural groups. Archives of Pediatrics & Adolescent Medicine, 151(11), 1144–1150.CrossRefGoogle Scholar
  48. Pavuluri, M. N., Luk, S.-L., & McGee, R. (1996). Help-seeking for behavior problems by parents of preschool children: A community study. Journal of the American Academy of Child & Adolescent Psychiatry, 35(2), 215–222.CrossRefGoogle Scholar
  49. Pescosolido, B. (1991). Illness careers and network ties: A conceptual model of utilization and compliance. Advances in Medical Sociology, 2, 161–184.Google Scholar
  50. Pescosolido, B. A., Gardner, C. B., & Lubell, K. M. (1998). How people get into mental health services: Stories of choice, coercion and ‘muddling through’ from ‘first-timers’. Social Science & Medicine, 46(2), 275–286.CrossRefGoogle Scholar
  51. Pescosolido, B. A., McLeod, J. D., & Avison, W. R. (2007). Through the looking glass: The fortunes of the sociology of mental health. In W. R. Avison, J. D. McLeod & B. A. Pescosolido (Eds.), Mental health, social mirror (pp. 3–32). New York: Springer.CrossRefGoogle Scholar
  52. Ramos-Sánchez, L., & Atkinson, D. R. (2009). The relationships between Mexican American acculturation, cultural values, gender, and help-seeking intentions. Journal of Counseling & Development, 87(1), 62–71.CrossRefGoogle Scholar
  53. Rosero-Bixby, L. (2004). Spatial access to health care in Costa Rica and its equity: A GIS-based study. Social Science & Medicine, 58(7), 1271–1284.CrossRefGoogle Scholar
  54. Russell, G., Steer, C., & Golding, J. (2011). Social and demographic factors that influence the diagnosis of autism spectrum disorders. Social Psychiatry and Psychiatric Epidemiology, 46(12), 1283–1293.Google Scholar
  55. Sabogal, F., Marin, G., Otero-Sabogal, R., Marin, B. V., & Perez-Stable, E. J. (1987). Hispanic familism and acculturation: What changes and what doesn’t? Hispanic Journal of Behavioral Sciences, 9(4), 397–412.CrossRefGoogle Scholar
  56. Savedoff, W. D. (2009). A moving target: Universal access to healthcare services in Latin America and the Caribbean. Washington, DC: Research Department, Inter-American Development Bank.Google Scholar
  57. Sayal, K., Tischler, V., Coope, C., Robotham, S., Ashworth, M., Day, C., et al. (2010). Parental help-seeking in primary care for child and adolescent mental health concerns: Qualitative study. British Journal of Psychiatry, 197(6), 476–481.Google Scholar
  58. Scarpaci, J. L. (1988). Help-seeking behavior, use, and satisfaction among frequent primary care users in Santiago de Chile. Journal of Health and Social Behavior, 29(3), 199–213.CrossRefPubMedGoogle Scholar
  59. Schelly, D., Jiménez González, P., & Solís, P. (2015). The diffusion of autism spectrum disorder in Costa Rica: Evidence of information spread or environmental effects? Health & Place, 35, 119–127.Google Scholar
  60. Shevell, M., Majnemer, A., Rosenbaum, P., & Abrahamowicz, M. (2001). Profile of referrals for early childhood developmental delay to ambulatory subspecialty clinics. Journal of Child Neurology, 16(9), 645–650.CrossRefPubMedGoogle Scholar
  61. Sivberg, B. (2003). Parents’ detection of early signs in their children having an autistic spectrum disorder. Journal of Pediatric Nursing, 18(6), 433–439.CrossRefPubMedGoogle Scholar
  62. Smith, K. P., & Christakis, N. A. (2008). Social networks and health. Annual Review of Sociology, 34, 405–429.CrossRefGoogle Scholar
  63. Unger, J. -P., De Paepe, P., Buitron, R., & Soors, W. (2008). Costa Rica: Achievements of a heterodox health policy. American Journal of Public Health, 98(4), 636–643.Google Scholar
  64. Weintraub, K. (2011). Autism counts. Nature, 479, 22–24.CrossRefPubMedGoogle Scholar
  65. Wiggins, L. D., Baio, J., & Rice, C. (2006). Examination of the time between first evaluation and first autism spectrum diagnosis in a population-based sample. Journal of Developmental & Behavioral Pediatrics, 27(2), S79–S87.Google Scholar
  66. Wing, L., & Potter, D. (2002). The epidemiology of autism spectrum disorders: Is prevalence rising. Mental Retardation and Developmental Disabilities Research Reviews, 8(3), 151–161.CrossRefPubMedGoogle Scholar
  67. Zuckerman, K. E., Mattox, K., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics, 132(3), 445–453.CrossRefPubMedPubMedCentralGoogle Scholar
  68. Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., et al. (2014a). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental & Behavioral Pediatrics, 35(8), 522–532.CrossRefGoogle Scholar
  69. Zuckerman, K. E., Sinche, B., Mejia, A., Cobian, M., Becker, T., & Nicolaidis, C. (2014b). Latino parents’ perspectives on barriers to autism diagnosis. Academic Pediatrics, 14(3), 301–308.CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2017

Authors and Affiliations

  1. 1.Department of Occupational TherapyClarkson UniversityPotsdamUSA
  2. 2.Hospital Nacional de Niños “Dr Sáenz Herrera,” CCSS, Child Developmental and Behavioral UnitSan JoséCosta Rica
  3. 3.University of Costa RicaSan JoséCosta Rica

Personalised recommendations