Breakout Session

The importance of including autistic individuals with high support needs in research studies

10-10:50 a.m. BEST Auditorium

Presented by: Robin Shafer, PhD, Assistant Research Professor, Kansas Center for Autism Research and Training; Cassie Stevens, Graduate Research Assistant, University of Kansas;  Jeri Sickels, Parent of an autistic teenager; Leia Holley, Program Director, Families Together

Autistic individuals who have high support needs - including those with intellectual disability, minimal spoken language, and/or who cannot complete daily living skills independently - are often excluded from studies of autism. This has led to a gap in our understanding of this significant portion of the autistic population, and it has resulted in a lack of treatment and support strategies that help these individuals and their families with their unique and substantial support needs. 

This panel will discuss the consequences of excluding autistic individuals with high support needs from research, what affected individuals and their families stand to gain from research that includes individuals with high support needs, and recent efforts by researchers to design studies of physiology and behavior that are accessible for individuals with high support needs with the goal of informing the development of treatments and supports that are catered to the specific needs of each autistic individual and their families.