"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:  While there is no evidence to suggest that the odds of an autism spectrum disorder (ASD) diagnosis is dependent upon family characteristics such as race/ethnicity, income or education, research examining the diagnosis of autism has found disparities in diagnosis and access to care among Latino and African American children.  Developing programs to address these disparities is important, as early diagnosis is critical for improved health outcomes for children with ASD

Objectives:  The current study was designed to better understand the challenges that Latino and African American parents of children with autism experience in receiving a diagnosis and treatment.  The study was designed to address the following research questions: 1) What is the process parents go through to receive their child’s autism diagnosis?; and 2) How do parents describe/characterize their experiences in accessing services for their children?  This study takes a mixed methods approach to better understand the experiences of parents in accessing services for children with autism.  This approach is important as it has the potential to identify intervention modalities that are culturally appropriate for the target population. 

Methods:   A total of ten focus groups were convened with 56 African American and Latino parents.  Focus groups were organized by race/ethnicity and language preference. A short survey was also completed at the end of each focus group.  Focus groups were facilitated by a bilingual team member and were digitally recorded and transcribed.

Results:  Overall, parents reported low levels of knowledge about ASD and related services when their child was first diagnosed.  The biggest service gaps when considering perceived need and access to care were found in Floor time, family therapy and applied behavioral analysis.  Qualitative data indicate parents encountered community physicians who did not take their concerns about their child’s development seriously.  Parents also reported: cultural barriers such as reticence to question a doctor’s judgment, stigma around a mental health issue, lack of family support, reticence to talk with outsiders about their child’s diagnosis and 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.  Parents reported numerous challenges navigating the service system and seemed to rely more on other parents for assistance and support than service providers.  Developing a health navigation model with trained parents/community health workers/promotores may be a novel way to provide parents support in navigating the service system.  Recommendations for policy changes as to how ASD support services are delivered are also discussed in order to have a more equitable service system.