“You Are the Voice of Your Child, If You Don't Speak up, No One Will Hear Your Son”: Latino and African American Parents' Perceptions on Access to Care for Children with Autism

Background: Research examining the diagnosis of autism spectrum disorders (ASD) has found disparities in diagnosis and access to care among Latino and African American children. The current study was designed to better understand the challenges that Latino and African American parents of children with ASD experience in receiving a diagnosis and treatment. Methods: Fifty-six parents (Latino and African American) participated in focus groups and completed a brief survey designed to identify challenges in accessing ASD diagnoses and treatment.  Results: Parents reported limited knowledge about ASD and related services.  The biggest gaps when considering perceived need and access to care were found in specialized services such as Floor time, family therapy and applied behavioral analysis.  Qualitative data indicate parents encountered community physicians who did not take concerns about their child’s development seriously.  Parents also reported: cultural barriers (e.g., reticence to question a doctor’s judgment and talk with outsiders about the diagnosis, stigma around ASD, lack of family support, language). In addition, parents described a pervasive perception that higher income and/or White families receive more and better services.  They also described a confusing service system that was difficult to navigate. Conclusions: Obtaining an ASD diagnosis can be a stressful and protracted experience for many Latino and African American parents. Developing a health navigation model with trained parents/community health workers may be a novel way to provide parents support in navigating the system.  Recommendations for policy changes as to how ASD services are delivered are also discussed for a more equitable service system.