Top

Journal of Autism and Developmental Disorders

Gepubliceerd in:

10-10-2017 | Original Paper

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

Auteurs: David Schelly, Patricia Jiménez González, Pedro J. Solís

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 2/2018

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.

vorige artikel Temporal Processing Instability with Millisecond Accuracy is a Cardinal Feature of Sensorimotor Impairments in Autism Spectrum Disorder: Analysis Using the Synchronized Finger-Tapping Task

volgende artikel Process Evaluation of the BOOST-A™ Transition Planning Program for Adolescents on the Autism Spectrum: A Strengths-Based Approach

An exception is stochastic actor based models, where studies have considered topics such as the influence of peer networks on adolescent alcohol use (e.g., Mundt al. 2012) and even self-reported behaviors associated with attention deficit and hyperactivity disorder (ADHD) (e.g., Aronson 2016). Importantly, these studies require probability samples and longitudinal data that are difficult to come by; arguably the best existing data come from the National Longitudinal Study of Adolescent to Adult Health (Add Health) study. Data on ASD may be impossible to acquire in the U.S. because of sampling limitations.

The number of ASD cases in Costa Rica is quite low—we estimate between 500 and 1000 cases. There is no evidence that true prevalence rates of ASD vary drastically across populations (Baxter et al. 2015), so if we extrapolate from population studies (e.g., Kim et al. 2011), Costa Rica is severely underdiagnosed.

Based on interviews and ethnographic observations, parents tend not to search for or be influenced by information about ASD on the internet. Importantly, such an influence would not likely lead to spatial clusters.

The public healthcare in Chile in the early 1980s (before increased privatization under Pinochet) was comparable to Costa Rica’s system in several ways, including equitable access to primary care clinics that were burdened with long wait times. Interestingly, among patients in a clinic with a mean wait time of 4.2 h, Scarpaci (1988) found that wait times were unrelated to how patients regarded the quality of care; proximity to the clinic and the quality of physicians were the important factors.

The clinical characteristics and geographic distribution of our sample were similar to those of the country-wide population of children who were assessed for ASD from 2010 to 2013. Only the percentage of low severity cases was high compared to the 2010–2013 population (40.0 vs. 20.3%), which if anything will accentuate any cul-du-sac effect.

Names of professionals were sometimes forgotten by parents, so the nodes represent the relevant organizations or clinics rather than the specific individuals.

This age is right in the middle of the range reported in the U.S. by Frith and Soares (1993) and very similar to the 18 months reported by Howlin and Asgharian (1999).

This amount of delay is consistent with delays observed in Sweden by Sivberg (2003) and slightly longer than the delay reported in the U.S. by Wiggins et al. (2006).

Among the 11 families that went directly to a private clinician, 9 (81.8%) lived in metropolitan areas with a high concentration of specialists, whereas only 15 of the 28 families on the public route (53.6%) lived in metropolitan areas; the remaining families lived at least 2 h from San Jose. These patterns are consistent with research showing increased risk of ASD in urban areas (e.g., Chen et al. 2008; Lauritsen et al. 2014).

Aronson, B. (2016). Peer influence as a potential magnifier of ADHD diagnosis. Social Science & Medicine, 168, 111–119.CrossRef

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.CrossRefPubMed

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.CrossRef

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.CrossRef

Birkel, R. C., & Reppucci, N. D. (1983). Social networks, information-seeking, and utilization of services. American Journal of Community Psychology, 11(2), 185–205.CrossRefPubMed

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.CrossRef

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.CrossRef

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.CrossRef

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.

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.

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.CrossRefPubMed

Clark, M. A. (2011). The DR-CAFTA and the Costa Rican health sector: A push toward privatization? The Latin Americanist, 55(3), 3–23.CrossRef

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.CrossRefPubMed

Deri, C. (2005). Social networks and health service utilization. Journal of Health Economics, 24, 1076–1107.CrossRefPubMed

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.CrossRefPubMed

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.CrossRef

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.CrossRefPubMed

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.CrossRef

Freidson, E. (1960). Client control and medical practice. American Journal of Sociology, 65(4), 374–382.CrossRef

Freidson, E. (1961). Patients’ views of medical practice. New York: Russell Sage Foundation.

Frith, U., & Soares, I. (1993). Research into earliest detectable signs of autism: What parents say. Communication, 27, 17–18.

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.CrossRefPubMed

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.CrossRefPubMedPubMedCentral

Grinker, R. R. (2007). Unstrange minds: Remapping the world of autism. New York: Basic Books.

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.CrossRef

Horwitz, A. (1977). Social networks and pathways to psychiatric treatment. Social Forces, 56(1), 86–105.CrossRef

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.CrossRef

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.CrossRef

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.

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.CrossRefPubMedPubMedCentral

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.CrossRefPubMed

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.CrossRefPubMed

King, M. D., & Bearman, P. S. (2011). Socioeconomic status and the increased prevalence of autism in California. American Sociological Review, 76(2), 320–346.CrossRefPubMedPubMedCentral

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.CrossRefPubMedPubMedCentral

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.CrossRef

Liu, K., & Bearman, P. S. (2015). Focal points, endogenous processes, and exogenous shocks in the autism epidemic. Sociological Methods & Research, 44(2), 272–305.CrossRef

Liu, K.-Y., King, M., & Bearman, P. S. (2010). Social influence and the autism epidemic. American Journal of Sociology, 115(5), 1387–1434.CrossRef

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.

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.CrossRefPubMed

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.CrossRef

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.CrossRef

McKinlay, J. B. (1973). Social networks, lay consultation and help-seeking behavior. Social Forces, 51(3), 275–292.CrossRef

McPherson, M., Smith-Lovin, L., & Cook, J. M. (2001). Birds of a feather: Homophily in social networks. Annual Review of Sociology, 27, 415–444.CrossRef

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.

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.CrossRefPubMedPubMedCentral

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.CrossRef

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.CrossRef

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.CrossRef

Pescosolido, B. (1991). Illness careers and network ties: A conceptual model of utilization and compliance. Advances in Medical Sociology, 2, 161–184.

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.CrossRef

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.CrossRef

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.CrossRef

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.CrossRef

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.

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.CrossRef

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.

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.

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.CrossRefPubMed

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.

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.CrossRefPubMed

Sivberg, B. (2003). Parents’ detection of early signs in their children having an autistic spectrum disorder. Journal of Pediatric Nursing, 18(6), 433–439.CrossRefPubMed

Smith, K. P., & Christakis, N. A. (2008). Social networks and health. Annual Review of Sociology, 34, 405–429.CrossRef

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.

Weintraub, K. (2011). Autism counts. Nature, 479, 22–24.CrossRefPubMed

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.

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.CrossRefPubMed

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.CrossRefPubMedPubMedCentral

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.CrossRef

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.CrossRefPubMedPubMedCentral

Titel: Parental Action and Referral Patterns in Spatial Clusters of Childhood Autism Spectrum Disorder
Auteurs: David Schelly
Patricia Jiménez González
Pedro J. Solís
Publicatiedatum: 10-10-2017
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 2/2018
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-017-3327-6

Andere artikelen Uitgave 2/2018

Array-CGH Analysis in a Cohort of Phenotypically Well-Characterized Individuals with “Essential” Autism Spectrum Disorders

Original Paper

Impressions of Humanness for Android Robot may Represent an Endophenotype for Autism Spectrum Disorders

Letter to the Editor

Brief Report: Body Image in Autism: Evidence from Body Size Estimation

Brief Report

Attention Training in Autism as a Potential Approach to Improving Academic Performance: A School-Based Pilot Study

Original Paper

White Matter Microstructure of the Human Mirror Neuron System is Related to Symptom Severity in Adults with Autism

Original Paper

Profiling Autism Symptomatology: An Exploration of the Q-ASC Parental Report Scale in Capturing Sex Differences in Autism

Original Paper