Community Partnerships and Autism Intervention Studies with Underserved Children throughout COVID-19

Background and Purpose The rising prevalence rate of autism spectrum disorder (ASD) among racial/ethnic minority children and existing disparities has elevated the need for culturally responsive interventions. However, a significant gap in ASD intervention design has existed for racial/ethnic minority children. An evidence-based intervention program that embodies culturally informed design is the Parents Taking Action (PTA; Lopez et al., 2019; Magaña et al., 2017) intervention. PTA is a culturally informed psychoeducation program for Latinx families of children with ASD. Other researchers have adapted PTA for use with various racial/ethnic autistic populations (Magaña et al., 2021). The purpose of this paper is to highlight PTA studies for racial/ethnic minority children conducted during various phases of the COVID19 pandemic. We provide three experiences of researchers who initially aimed to adapt and modify the PTA to meet the needs of Navajo, Chinese, or Latinx children and families. The specific studies reviewed include, 1) PTA program for Diné (Navajo) parents and guardians (parents/guardians) of children at-risk of or diagnosed with ASD in Northern Arizona; 2) PTA Chinese used a community-based participatory research approach for underserved Chinese immigrant families of children with ASD; and 3) Padres de Niños con Autismo Como Técnicos en el Análisis Conductual (PACTO) or Partnering with parents of children with autism in early behavioral intervention, was a caregiver-mediated intervention for Latinx caregivers of children with ASD.

Method Each of the researchers had received IRB approval and funding to conduct the intervention in person with families. Working with community partners to support the development and/or implementation of interventions for underserved populations of children with ASD in the time of COVID-19 was essential to the continuation of each intervention study. Thus, the research question guiding this paper is, How have autism intervention researchers adapted their pre-COVID community partner engagement strategies to maintain or initiate partnerships with community organizations? Each of the researchers offers a case summary of their experience from pre-COVID to present day in the form of a narrative. We then drew themes from the narratives.

Results The researcher narratives illustrated multiple challenges that emerged during the pandemic such as increased provider burnout, technological challenges, and complexities in developing trust with community partners without in-person meetings. The researchers outlined promising strategies to facilitate intervention studies through challenging times, including utilizing flexible approaches to community engagement, applying researcher positionality, and having a trusted community member as part of the research team champion the project.

Conclusions and Implications COVID-19 presented a host of barriers to researchers battling inequities and building solutions for underserved children with ASD and their families. This study presented the challenges promising strategies, and suggestions for suture work learned by three autism intervention researchers during the COVID-19 pandemic. The researchers center their discussion on community partnerships they developed prior to and maintained during COVID-19. In so doing the researchers were able to develop innovative methods to support Navajo, Chinese, and Latinx families raising children with ASD. Implications for researchers facing similar challenges and beyond the pandemic are explored.