Objective To compare barriers to autism spectrum disorder (ASD) diagnosis and current ASD-related service use among non-Latino white (NLW) families and Latino families with English proficiency or limited English proficiency. Methods We conducted a mixed-mode survey of families of children with confirmed ASD seen at specialty clinics in three U.S. cities. Bivariate and multivariate analyses compared barriers to ASD diagnosis, current service use, and unmet therapy need among NLW, Latino-English proficient (L-EP), and Latino-limited English proficient (L-LEP) families. Results Overall, barriers to ASD diagnosis were prevalent: families (n=352) experienced a mean of 8 of 15 barriers to ASD diagnosis. The most prevalent barriers overall were “stress of diagnostic process,” “parent knowledge about ASD,” and “understanding medical system.” Compared to NLW families, L-LEP families were more likely to experience barriers related to knowledge about ASD and trust in providers. Children in L-LEP families also had fewer current therapy hours and more unmet therapy needs than children in NLW families. L-EP families’ barriers and treatment services use profile was more similar to NLW than L-LEP families. Conclusions English proficiency was an important marker for barriers to ASD diagnosis and treatment in Latinos. Increasing ASD-related knowledge and provider trust may decrease disparities in the diagnosis and treatment of ASD among U.S. Latinos.

Objective This study assessed the relationship of timeliness of ASD diagnosis with current use of ASD-related services in a nationally-representative sample of U.S. children. Methods The CDC’s Survey of Pathways to Diagnosis and Services was used to assess experiences of 722 children age 6–11 with ASD. Bivariate and multivariate associations between age and delay in ASD diagnosis and use of health services were explored. Older age of diagnosis was defined as diagnosis at age 4 years or older. Delay in diagnosis was defined as time ≥2 years between first discussion of concerns with provider and ASD diagnosis. Health services included current use of behavioral intervention therapy (BI), school-based therapy, complementary/alternative medicine (CAM), and psychotropic medications. Results Mean age of ASD diagnosis was 4.4 years, and mean diagnostic delay was 2.2 years. On adjusted analysis, diagnosis at ≥4 years old was associated with lower likelihood of current BI or school-based therapy use. Diagnosis at ≥4 years old was also associated with higher likelihood of current psychotropic medication use. Likelihood of current psychotropic medication use increased with older age of ASD diagnosis. A ≥2 year delay in diagnosis was associated with higher likelihood of current CAM use. Likelihood of current CAM use increased as delay in diagnosis got longer. Conclusions Both older age of diagnosis and longer delay in diagnosis were associated with different health services utilization patterns among younger children with ASD. Prompt and early diagnosis may be associated with increased use of evidence-based therapies for ASD.

Objectives To determine associations of unmet need for child or family health services with (1) adverse family financial and employment impacts and (2) child behavioral functioning problems among US children with autism spectrum disorder (ASD), developmental delay (DD), and/or intellectual disability (ID). Method This was a secondary analysis of parent-reported data from the 2009–10 National Survey of Children with Special Healthcare Needs linked to the 2011 Survey of Pathways to Diagnosis and Services. The study sample (n = 3,518) represented an estimated 1,803,112 US children aged 6–17 years with current ASD, DD, and/or ID (developmental disabilities). Dependent variables included adverse family financial and employment impacts, as well as child behavioral functioning problems. The independent variables of interest were unmet need for (1) child health services and (2) family health services. Multivariable logistic regression models were fit to examine associations. Results Unmet need for child and family health services, adverse family financial and employment impacts, and child behavioral functioning problems were prevalent among US children with developmental disabilities. Unmet needs were associated with an increased likelihood of adverse family employment and financial impacts. Unmet needs were associated with an increased likelihood of child behavioral functioning problems the following year; however, this association was not statistically significant. Conclusion Unmet needs are associated with adverse impacts for children with developmental disabilities and their families. Increased access to and coordination of needed health services following ASD, DD, and/or ID diagnosis may improve subsequent outcomes for children with developmental disabilities and their families.