Barriers to Diagnosis and Treatment of Autism Spectrum Disorder in Latino and White Non-Latino Families

Background: Latino children are diagnosed with autism spectrum disorder (ASD) less often and at older ages than white non-Latino children. Early ASD diagnosis is associated with improved child functioning and better family outcomes. Little is known about barriers families experience to ASD diagnosis, how these barriers differ according to ethnicity and family language, and whether diagnostic barriers relate to subsequent ASD treatment use.

Objectives: To compare barriers to ASD diagnosis and rates of ASD-related service use among Latino and white non-Latino families.

Methods: We surveyed a random sample of parents of Latino and white non-Latino children with ASD seen at academic autism specialty clinics in California, Colorado, and Oregon. Study population included families of children age 2-10 with ASD diagnosis verified by DSM-4-TR or DSM-5 criteria and administration of the Autism Diagnostic Observational Schedule (ADOS).  Parents completed a mixed-mode survey in English or Spanish.  Survey assessed experience of 15 possible barriers to ASD diagnosis as well as hours of current therapy use. Bivariate and multivariate analyses compared frequency of specific barriers to ASD diagnostic care, total number of barriers, and rates of therapy service use among Latino families with limited English proficiency [L-LEP], Latino families with English proficiency [L-EP], and white non-Latino [WNL] families.  Race/ethnicity were per parent report. English proficiency was defined as parent report of speaking English less than “very well.”

Results: 357 families (L-LEP: n=94, L-EP: n=95, WNL: n=168) completed the survey. Families experienced a median of 8 barriers, with L-LEP families experiencing the most barriers (Adjusted Incidence Rate Ratio 1.15 [1.05-1.27] compared to WNL). The most frequent barriers experienced overall were "Diagnostic process stressful for family" (74.9% of families) and "Parent lacked knowledge about ASD" (71.4% of families). On multivariate analysis, the following barriers were more frequent among L-LEP families compared to WNL families: “Parent was afraid to ask for help due to legal problems (Adjusted Odds Ratio [AOR] 13.00, 95% Confidence Interval [5.18-32.62]), “Parent lacked knowledge about ASD” (AOR 3.12 [1.37-7.13]), “Diagnostic process stressful for family (AOR 2.90 [1.37-7.13]), and “Difficult to trust providers” (AOR 2.71 [1.55-4.76]).  L-EP and WNL families reported similar barriers, except “Diagnostic process was stressful,” which was less frequent among L-EP compared to WNL (AOR 0.51 [0.29-0.90]).  In analyses of service use, experiencing more barriers was significantly associated with currently using <1 hour per week of services per week (AOR 0.40 [0.29-0.54]). L-LEP families were likely than WNL families to receive <1 hour/week of therapy compared to children in WNL families (AOR 3.84 [1.57-9.40]).  There were no differences in therapy hours between L-EP and WNL families.

Conclusions: English proficiency is an important marker of barriers to ASD diagnosis and treatment among Latinos with ASD.  Children in L-LEP families experienced more frequent and different types of barriers to ASD diagnosis than children in L-EP and WNL families.  Improving family knowledge about ASD and trust in providers and the health system may help L-LEP families access earlier diagnosis and treatment.