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

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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.

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Notes

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. 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.

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

  7. 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).

  8. 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).

  9. 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).

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  1. David Schelly

    Present address: Department of Occupational Therapy, Clarkson University, Box 5883, 8 Clarkson Ave., Potsdam, NY, 13699, USA

Authors and Affiliations

  1. Hospital Nacional de Niños “Dr Sáenz Herrera,” CCSS, Child Developmental and Behavioral Unit, San José, Costa Rica

    Patricia Jiménez González

  2. University of Costa Rica, San José, Costa Rica

    Pedro J. Solís

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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.

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Correspondence to David Schelly.

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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.

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

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This research is based on Dr. Schelly’s PhD dissertation at the University of Wisconsin, which he submitted in May 2016.

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Schelly, D., Jiménez González, P. & Solís, P.J. Parental Action and Referral Patterns in Spatial Clusters of Childhood Autism Spectrum Disorder. J Autism Dev Disord 48, 361–376 (2018). https://doi.org/10.1007/s10803-017-3327-6

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