F1G: Research Design in Profound Autism

Individuals with profound autism, those who are nonverbal or minimally verbal, have intellectual disability, and require 24/7 support, remain significantly underrepresented in empirical research. This exclusion limits the field’s ability to generate evidence that reflects the lived experiences, health needs, and safety considerations of this population and their families. This presentation outlines a research design approach that anticipates communication differences, behavioral variability, sensory needs, and the essential role of caregivers as active participants. Strategies for recruitment and retention include partnering with trusted community organizations, flexible scheduling, clear expectations, and caregiver supported consent and assent. Data collection considerations emphasize environmental safety, sensory supports, feasible measures, structured observation, caregiver reported outcomes, and physiologic indicators. Early pilot work demonstrates that predictable routines, caregiver presence, and low burden measures enhance feasibility. Advancing research protocols strengthens nursing science, informs policy, and ensures that individuals with profound autism and their families are meaningfully represented in future evidence based practice.

Learning Outcomes:

Identify key design principles that support the ethical and feasible inclusion of individuals with profound autism in empirical research, including communication, sensory, and behavioral considerations.

Evaluate recruitment and retention strategies that strengthen trust, reduce burden, and enhance participation among families requiring 24/7 support.

Apply evidence informed data collection approaches—such as structured observation, caregiver reported outcomes, and physiologic indicators—to develop research protocols that are safe, feasible, and representative of this population.

Speakers