Latino and African American children are less likely to receive a timely autism diagnosis than their white counterparts. Delays in diagnosis lead to delayed treatment, which in turn decreases the chances of good long-term outcomes. So understanding and reducing disparities in the timely diagnosis of autism is an important health priority for Latino and African American communities.
To find out where the health care system stumbles, the SC CTSI partnered with the Autism Speaks Autism Treatment Network site at CHLA and the LA County Regional Centers (the local centers that diagnose and coordinate care for individuals with developmental delays). This team conducted focus groups with local families and providers to understand their experiences in the evaluation of children who ultimately proved to have autism. They also worked to identify potential areas for intervention to reduce disparities in the timely diagnosis of autism.
Results identified three primary areas for intervention: 1) increase knowledge about autism in community and clinic settings; 2) assist families in navigating the complicated health service systems; and 3) increase the advocacy skills of parents so they are better prepared to seek out appropriate services for their children.
The SC CTSI then supported the creation of a new curriculum to address these three areas. The curriculum was created with input from parents, local providers, promotoras, clinicians, and researchers. It is designed to be presented by promotoras in community settings, a novel approach to disseminating information about autism and helping families navigate complex service systems for this disease. The autism community has enthusiastically supported this endeavor. The SC CTSI is working with the Autism Treatment Network and other groups to assess the intervention’s effectiveness in helping parents and families obtain timely screening, diagnosis, and access to needed services for children with autism.