Presenting Author: Matthew Siegel, M.D.
At ABAI's 20th Annual Autism Conference in January 2026, Dr. Matthew Siegel presented the Defining Profound Autism: Seeking Clarity to Advance Services and Science. The definitions of autism have changed dramatically over the past four decades to include a wide range of people. The field continues to debate the utility and meaning of identifying portions of the spectrum as distinct groups, including the recently introduced term Profound Autism. Autistic people with Profound Autism have very high support needs, but have received less research attention over time, despite having elevated rates of co-occurring mental health and behavioral challenges. The field lacks consensus criteria for this group, which impedes research progress. We will explore some of the ways the field has approached complex presentations in autism, highlight the critical area of adaptive functioning, and consider the benefits and risks of focusing on this group. Directing attention to the adaptive functioning of people with Profound Autism may lead to greater clarity in identification and improved individualization of services and supports.
Instruction Level: Intermediate
Target Audience:
This presentation is designed for behavior analysts, psychologists, special educators, researchers, clinicians, and service providers who work with individuals on the autism spectrum, particularly those supporting individuals with high support needs. It may also be of interest to policymakers, program administrators, and advocates seeking greater clarity around the term "Profound Autism" and its implications for research, diagnosis, and individualized services.
Learning Objectives:
1. Describe the origins of the term Profound Autism (PA) and the key factors that contributed to its definition by the Lancet Commission.
2. Explain the different approaches researchers have used to operationalize PA, including the use of adaptive functioning, IQ, and verbal fluency as criteria.
3. Identify recent efforts to establish a clearer framework for defining PA and discuss its implications for research, measurement, and lifelong support.