Using Community Advisory Boards to Inform Interventions for Latinx Children with ASD.

Background: Data from the Arizona Developmental Disabilities Surveillance Program 1 in 71 8-year children have autism spectrum disorder (ASD) in Arizona. When considering race and ethnicity, White or black non-Latinx children are more likely to be identified with ASD than Latinx children in Arizona. For those Latinx children who are diagnosed, they are more likely to receive a later diagnosis and receive fewer services compared to non-Latinx white children. A plethora of socio-cultural individual, family, healthcare systems, educational systems, community systems factors impact access to diagnosis and services for Latinx children. Thus, to reduce ASD disparities among Latinx children it is critical to engage in interprofessional collaborations to engage relevant stakeholders and promote social justice through collaborative work. Community advisory boards provide a platform for interprofessional and community engagement to enhance the inclusiveness of the target community perspectives and advisement. The purpose of this presentation is to discuss the development and utility of a community advisory board to inform the scope of the problem, outreach, and participant recruitment for the pilot of a culturally informed intervention combined with pivotal response training for Latinx families of children with ASD.

Objectives:

1) increase awareness of ASD disparities for Latinx children in AZ.

2) identify effective collaborations among service providers and Latinx families in the autism community

3) highlight opportunities to engage Latinx families raising children with autism in intervention programs

Methods: A geographic area within Maricopa County was identified to be the targeted area for the pilot intervention project. An engagement and relationship-building phase followed. After which, key stakeholders within the community were invited to serve on a community advisory board to guide the pilot intervention project. The community advisory board responsibilities included 1) identify barriers Latinx families experience in the diagnostic process and challenges after diagnosis; 2) collaborate with the program by incorporating their knowledge of resources in the community; 3) describe strategies within the community that have been successful for outreach and recruitment of Latinx families.

Results: Six community members (three Latina mothers of children with ASD, three providers) served on the community advisory board. The community advisory board provided information and advisement about the problem, outreach strategies, retention considerations, appropriate and reliable community resources, and offered space for assessments. This information contributed to the successful recruitment of 10 parent-child dyads for the intervention program.

Conclusions: The community advisory board supported the implementation of a culturally informed intervention for Latinx families raising children with ASD. Through this inclusive practice the community perspective of challenges Latinx children and families face in access to ASD diagnoses, treatment services in the targeted region. The community advisory board assisted the researcher in identifying inclusive strategies in outreach, modifications of the intervention delivery, and culturally appropriate resources. This presentation is particularly relevant, given the variety of providers and disciplines involved in the lives of individuals diagnosed with ASD. Implications for outreach, recruitment, inclusion, and retention of Latinx children and families in ASD research will be discussed.