Autism in the African American Community of South Los Angeles: A Community Partnered Participatory Research Approach

Background:  As treatments for ASD gather empirical support, there is increased need to implement effectiveness trials at the community level.  The need for research methods promoting community engagement has been highlighted, but there are few guidelines on appropriate methods in under-resourced communities.  Community Partnered Participatory Research (CPPR) has emerged as an effective approach promoting equity and bi-directional learning (Wells et al., 2013).  

Objectives:  The present study represents the first phase of a project examining the effectiveness of an empirically-supported intervention in South Los Angeles.  Rather than extending an existing treatment protocol to the community without first consulting community members, the project began with the formation of a partnership between university academics at UCLA and community stakeholders at Healthy African American Families.  It was decided an important initial goal in the collaboration would be to implement a conference informing the community about autism and educating researchers about community-reported issues related to ASD.  

Methods:  Biweekly workgroups were held to plan the conference.  Conference presenters included a combination of academic researchers and community members.  Data collected were quantitative and qualitative and were culled from anonymous survey responses, audio-recordings, and observational notes assessing perceptions of ASD in the community.

Results:  250 individuals attended the conference and 140 completed evaluation surveys. 81% of respondents reported knowing an individual with a diagnosis of ASD (11% parents, 28% other family member, 32% friend of family, 29% service provider).  52% of respondents reported knowing an individual whom they thought might have an autism diagnosis (8% parents, 23% other family members, 36% friends of family, and 33% service providers). 

When asked about ASD resources in the community, the majority of participants endorsed Doctors/Other healthcare providers (80%), followed by the Internet (59%), Autism Research Center (59%), and Books/Newspapers/Magazines (44%) as the most likely places they would seek advice and information if they had concerns about a child’s development.  Common barriers to accessing services included lack of knowledge about ASD (83%), lack of knowledge about local ASD resources (79%), and concerns about an individual being labeled as having ASD (64%).  When asked about what kinds of ASD services would benefit the community, parent-mediated treatment (88%), part-C-funded early intervention (78%), and clinician-mediated intervention (72%) were the most endorsed.  

Preliminary qualitative analyses of conference discussions indicated several themes, including stigmatization of individuals with ASD, difficulties navigating healthcare/school districts to access services, the receipt of punitive consequences, rather than appropriate intervention, and the lack of ASD research including participants of color. 

Conclusions:  Community responses showed that most participants knew an individual with autism, suggesting that knowledge of the disorder is reaching the South Los Angeles community, although services may be more difficult to access.  Overall, the conference reflected a strong interest in increasing and improving the quality of local ASD resources. The CPPR approach will continue, directly informing the implementation of sustainable intervention research that will better address the needs of under-resourced communities impacted by ASD.