Engaging autistic adults and caregivers to improve PCOR/CER research in early childhood autism interventions

Early intervention is associated with improved developmental outcomes for autistic children, but autistic adults report that much of early childhood intervention addresses skills that are not typically prioritized by autistic people and that these interventions often have a negative cascading impact on their autonomy and quality of life into adulthood. Additionally, caregivers of autistic children often report that their child’s early intervention experiences do not adequately address all their needs or their desired outcomes for their child. Autistic self-advocates have expressed these concerns, but early childhood autism researchers have been slow to collaborate with these stakeholder groups and intentionally consider the impacts of their research on autistic people over time and across developmental domains. Such a gap in research can only be filled by researcher collaboration with autistic individuals and their caregivers. We propose to address this problem in two ways. First, we will convene a diverse group of stakeholders, including autistic adults and caregivers of autistic people at different ages, to develop a list of research priorities for early autism intervention research. This will provide the longitudinal lens necessary to ensure that future PCOR research accounts for the cascading impacts of early interventions on a child’s development, family system, and quality of life as they age. Second, we will develop a set of strategies to meaningfully engage autistic adults, who may have unique social/communication needs and therefore may not be successfully engaged using existing strategies. As a research group of speech-language pathologists with: (a) research experience in early intervention clinical trials with autistic toddlers and their families, (b) clinical expertise in the social communication needs of autistic individuals, we are uniquely positioned to accomplish these goals.