Mixed-Methods Examination of the Experiences of Black and Latinx Parents of Autistic Children Working with Their Child's Therapists During the Early Intervention-to-Special Education Transition - Intensive early childhood therapies help autistic children build foundational developmental skills that improve independence, health, functioning, and community participation across the lifespan. However, families of young autistic children face extensive barriers to accessing therapies - barriers which are exacerbated for families who identify as racial and ethnic minorities due to systemic discrimination, inequitable resource allocation, and language inaccessibility. The Individuals with Disabilities Education Act (IDEA) attempts to increase therapy access by offering community- and school-based therapies to all children with demonstrated need. IDEA Part C early intervention (EI) therapies for children 0-2 years address developmental concerns and prioritize parent intervention involvement. Many young autistic children will then transition into IDEA Part B early childhood special education (ECSE) therapies at age 3 which focus on educational attainment. While IDEA mandates parent participation in all special education services, the ECSE system often lacks the time, tools and resources to effectively engage parents in school-based therapies. By increasing time practicing intervention skills in real-world settings and parent-provider collaborations, increased parent ECSE therapy involvement can enhance quality of care and support development for children who rely on the ECSE system for therapies. The transition into ECSE from EI presents a unique opportunity to prepare parents with the skills and knowledge to participate in ECSE therapy interventions. However, parents report stress, confusion, limited information, minimal collaboration and a lack parent involvement during the transition. Transition studies have also largely excluded Black and Latinx families, limiting insight into the unique experiences of parents who often experience complex barriers to accessing services for their autistic children. In order to develop transition interventions that equitably and meaningfully build parents' ability to participate in ECSE therapies, researchers must first understand the nuances of Black and Latinx parents’ experiences during and after their child’s EI-ECSE transition. This study seeks to examine the ECSE therapy involvement experiences, needs, and recommendations of Black and Latinx parents whose autistic children recently completed the EI-ECSE transition. Using focus groups and surveys, this work will answer four research questions: (1) What are Black and Latinx parents’ experiences participating in their autistic children’s therapies before, during, and after the EI-ECSE transition? (2) What barriers do parents experience that impact their ability to be involved in their child’s ECSE therapies? (3) What recommendations do parents have for providers and schools to improve opportunities for parents to be involved in their child’s ECSE therapies? (4) How do parent and child demographic factors, identities, and resources influence parents’ ability to participate in their child's ECSE therapies? These findings will later be used to inform the development of an equity-focused intervention that increases parents’ ability to participate in ECSE therapies. Aim 1 seeks to conduct focus groups, led by parents with lived experience, with Black and Latinx parents (including Spanish-speaking parents) to explore the nuances of the therapy transition experience as well as to identify barriers to and recommendations for increased parent involvement. Aim 2 seeks to collect survey data from focus group participants to provide complementary insight into participants’ demographic factors, their child’s needs, their experiences of caring for their autistic child, and their child’s service access. Synthesized findings will provide nuanced insights into Black and Latinx parents’ transition experiences and will identify actionable steps to improve quality of care delivered to autistic children and their parents in ECSE settings.
