Access to Diagnostic and Autism-Related Services in Under-Resourced and Minority Families: Barriers and Enablers for Families and Educational Service Providers

Background: Children with ASD from under-resourced and ethnic minority families are diagnosed and enter treatment later than other children (Mandell et al., 2002). Common barriers to accessing care include socioeconomic factors, availability of medical treatment and insurance, and knowledge of child development. Although previous research has reported on potential barriers, it is still unclear which factors enable these families to access diagnostic or educational services. Further, little research has examined barriers and enablers related to delays in care for this population using first-hand information gained from qualitative interviews.

Objectives:  To identify barriers to care and resources perceived as helpful in obtaining services for underserved minority families in a large city.

Methods: Focus groups (3) and interviews (11) were conducted in a large urban setting to learn about perceived barriers and facilitators to accessing evaluations and autism-specific services. Participants included 28 providers and 24 caregivers of recently diagnosed children with autism from under-resourced communities. Providers were those who worked with families that met the above criteria.

After coders established inter-rater reliability with the master coder (2 consecutive transcripts at ϰ> .60), the qualitative data were analyzed in Dedoose using open coding and then thematic analysis. All transcripts were coded by two independent coders to insure inter-coder reliability.

Results: Several barriers to obtaining an ASD diagnosis as well as autism-related services were identified. Barriers included: (1) poor accessibility for non-native English speakers, (2) stigma related to the diagnosis, (3) absence of knowledge of ASD and the service system, (4) lack of financial resources and transportation, (5) provider’s lack of cultural sensitivity, and (6) limited community resources (e.g., availability of local services).

Participants also reported on helpful resources. These included: (1) provider advocacy on behalf of the family, (2) providers taking the role of “students” of the family’s culture, (3) providers creating culturally matched videos for parent training, (4) providers initiating parent engagement strategies (e.g., using texting as a mode of communication, including parents in goal development), (5) culture and language matched parent peers to help guide families, and (6) technology for language accessibility.

Conclusions: Caregivers and providers of children with ASD consistently identified similar barriers to accessing care for families from culturally diverse and under-resourced backgrounds. Common barriers such as language specific difficulties, stigma associated with ASD, and accessibility of services often lead to a delay in diagnosis and access to services for minority children with autism. However, participants also identified specific supports or enablers perceived as useful in obtaining a diagnosis or related services, such as, provider advocacy, culturally matched supports, and other language-based accommodations. These findings highlight important considerations for providers working with under-resourced and ethnic minority families and suggest a need for systemic changes in order to facilitate earlier access to an autism diagnosis and services in under-resourced communities.