Disparities in Service Utilization Among Children with Autism Spectrum Disorder: A Review of the Literature
Previous research has demonstrated racial, ethnic, and socioeconomic disparities in autism spectrum disorder (ASD) diagnosis. However research related to disparities in service access and utilization in ASD is limited.
This literature review identified evidence related to the following key questions (KQ): 1) what are the disparities in service utilization among children with ASD by race/ethnicity and/or socioeconomic status, 2) are there differences in effectiveness of interventions for children with ASD by race/ethnicity and/or socioeconomic status and 3) are there differences in the quality of care provided to children with ASD by race/ethnicity and/or socioeconomic status?
Methods: On September 1, 2016, MEDLINE, PsycINFO, ERIC, and CINAHL databases were searched using a combination of MeSH terms and keywords related to ASD, disparities, treatment, and services; there was no limit to the date range. This search was supplemented by a review of relevant citations. The search identified 175 articles containing relevant keywords and addressing pediatric populations. At least two authors reviewed the titles and abstracts of all articles with full text of potentially relevant articles further reviewed. Authors abstracted articles that address at least one key question and met eligibility criteria.
Ten articles were identified, of which eight reported findings on service access and utilization (KQ1) with treatment disparities reported along several dimensions including access to care, referral frequency, number of service hours, and the proportion of unmet service needs. Groups with relatively low access to care include African American and Hispanic/Latino children, as well as children from low-income households. Findings from the papers reviewed indicate that these populations were shown to have higher odds of not having a primary care provider, are less likely to receive specialty and subspecialty care, and have less access to special education services as compared to their white, non-Hispanic, higher-resourced counterparts. None of the identified studies examined differences in intervention effectiveness (KQ2). Four studies addressed KQ3 by showing that parents of African American and Latino children reported worse quality of care (e.g. higher reports that doctor did not spend enough time with the family and not being sensitive to the family values), which may indirectly affect treatment effectiveness.
This systematic review found evidence of disparities in service utilization and service quality among children with ASD by race/ethnicity and socioeconomic status. Evaluation of disparities in access as well as quality of care and effectiveness of intervention may further identify groups in need of outreach, care coordination and/or other interventions.