Retrospective Case Study on Advocate Latina Mothers and Their Educational Journey with a Child with Autism Spectrum Disorder

Background: Latinx children are more likely to receive a late diagnosis of autism, delaying critical early intervention services. Any delay jeopardizes long term outcomes in children with ASD. Capturing and understanding the experiences of underserved Latinx communities is needed in order to address this diagnosis gap. Parents play a critical role in the early diagnosis of treatment of children. Hence, exploring Latinx parents experiences as community advocates sheds light into potential solutions to the ASD diagnosis gap for Latinx families.

Objectives: The study’s aim is to explore the experiences of Latina mothers as they become active advocates for their children and other families in a community-based setting in Southern California. Specifically, the study research questions were RQ1: What are the experiences of Latinx mothers of a child with autism as they advocate for services for they child within the U.S. school system? RQ2: What previous experiences have helped Latina mothers of a child with autism become active parent mentors to other parents?

Methods: This retrospective case study analysis employed a qualitative approach that specifically targeted three Latina mothers of a child with ASD through convenience sampling and who were recruited within a community-based organization focused on parent advocacy. Participants were interviewed one-on-one in a semi-structured format. Interviews lasted between 1 hour to 2 hours and 25 minutes. All three interviews were audio recorded and destroyed after transcribed. The interview included 14 questions that were based on four areas (i.e., Background, child Information, school experience, and advocacy). The settings of the interviews were a public library, community organization center, and a participant’s home. In order to conduct data analysis, researchers used open-coding techniques and application of labels to find similar themes across all of the three interviews.

Results: Findings were organized into five broad themes that came across the three interviews in relation to the mother and her community-based advocacy experience. These themes included parent personality qualities, actions, unresolved concerns or events, understanding of the special education process, and obstacles in acquiring services.

Conclusions: Within an underserved community, the lack of direct resources may encourage Latinx mothers to seek information and resources available in the community needed in order to navigate the special education system. Likewise, while in their parent advocacy educational journey, Latinx parents are able to get informed and at the same time help other parents with education and advocacy. The results from this study suggest that previous life experiences that parent advocates go through make them ideal candidates to educate other parents.