Identifying the Needs of Latino Immigrant Children with ASD in Central Texas: Results from a Mixed-Methods Needs Assessment

Background and Purpose: Although much is known about the prevalence and diagnosis of Autism Spectrum Disorder (ASD) through surveillance studies, little is known about the experiences of Texan families. Texas is comprised of a racial/ethnically (58.3% reported racial/ethnic minority) and linguistically (36% speak non-English language in home) diverse population. It is important to assess service access and receipt in Central Texas to determine if available services and supports are adequate for the needs of the community. Significant disparities in access to services and outcomes among racial and ethnic minority groups and in immigrant and rural communities (Nguyen et al, 2016), have yet to be studied in Central Texas. The purpose of this needs assessment study is to fill these gaps in knowledge and determine the diagnostic and service needs of children with ASD and their families in Central Texas. We examined immigrant Latino families compared to Latino US born and White families of children with ASD.

Methods: Parents of children with ASD who were between 0 and 21 years of age were recruited through community agencies, schools, and parent support groups in Central Texas. Parents were invited to participate in a survey (online, paper) which assessed: ASD Diagnostic Process and Experience, Current Therapy and Services, Access to ABA Services, Parent Beliefs about ASD, Community Views and Knowledge about ASD, and Changing Health Care for ASD. Parents were also invited to participate in focus groups to obtain more detailed information about their experience. Focus groups were led by one or both authors and a graduate student. The survey (online, paper) and focus groups were also available in English and Spanish. To date, 46 parents have completed the survey (Immigrant Latino n = 12, US born Latino n = 9, US born White n = 25) and 19 parents have participated in focus groups (English n = 8; Spanish n = 11).

Findings: Analyses of the survey showed that non-Latino White families were more likely to have been provided with information about available services when they received an ASD diagnosis (56.0%) than Latino immigrant families (16.7%) and Latino US born families (22.2%).  A greater proportion of Latino families reported having to travel a long distance to receive an ASD evaluation (immigrant Latino 50.0%; US born Latino 33.3%) when compared to non-Latino White families (8.0%). Additionally, 84% of non-Latino white families reported that their child’s therapy needs were met, but only 27.3 of immigrant Latino families reported this. Focus groups found significant needs for all families, specifically in the form of a “one-stop shop” that would include a diagnostic team with bilingual clinicians, therapeutic services to address unique needs of children with ASD, family resources, and greater facilitation and guidance post-diagnosis and during periods of transition.

Conclusions and Implications: Findings suggest that coordinated services are needed to ensure that all children with ASD have equitable access to diagnostic and therapeutic services. This research will inform the development and implementation of evidence-based practices in the assessment, diagnosis, and treatment of ASD in Central Texas.