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| Profound Autism: A Diagnosis to Not Be Missed |
| Saturday, January 18, 2025 |
| 1:30 PM–2:20 PM |
| Sheraton New Orleans, Level 3, Napoleon Ballroom BC |
| Area: AUT; Domain: Applied Research |
| Chair: M. Christopher Newland (Auburn University) |
| CE Instructor: M. Christopher Newland, Ph.D. |
| Presenting Author: LEE WACHTEL (Kennedy Krieger Institute) |
| Abstract: In 2021, the Lancet Commission on the future of care and clinical research in autism proposed the term “profound autism” to refer to autistic individuals with comorbid intellectual disability with IQ <50 and minimal-to-no language who require 24 hour supervision and assistance with activities of daily living. The profound autism rubric was meant to allow for a more accurate and precise autism diagnosis than what is currently offered within the DSM-5, with the goal of better characterization of all individuals across the autism spectrum in order to enhance clinical care, research and long-term outcomes for everyone. The Lancet Commission’s emphasis on diagnostic clarity was consistent with other scientific initiatives to establish clinically meaningful autism subtypes rather than erroneously lumping everyone together and potentially missing important distinctions carrying direct impact on autistic individuals, their families, global health and psychosocial functioning. Multiple issues are of particular and heightened concern for those with profound autism, including challenging and maladaptive behaviors, psychiatric comorbidities, vastly discrepant service needs with an associated nationwide dearth of such, and unequal representation in crucial research. While some autism advocates have decried “profound autism” as ableist and discriminatory, this stance is largely inconsistent with science and often paradoxically leads to the exclusion of those in greatest need. Understanding and acceptance of the profound autism concept is critical in terms of serving individuals across the autism spectrum disorder (ASD) spectrum. |
| Instruction Level: Intermediate |
| Target Audience: Behavior analysts |
| Learning Objectives: At the conclusion of the presentation, participants will be able to: (1) Define “profound autism” as presented by the Lancet Commission and explain why this term was seen as important for ongoing excellence in the field of autism; (2) Discuss the evolution of the ASD diagnosis within the Diagnostic and Statistical Manual (DSM) and some potential shortcomings of the DSM5 ASD diagnosis; (3) Discuss multiple issues that may particularly impact those with profound autism and their families, including medical, psychiatric and behavioral comorbidities, adaptive deficits and need for lifelong intensive care as well as frequent inability to achieve optimal community integration; (4) Gain insight into the under-representation of profound autism in imperative scientific research; (5) Objectively evaluate some of the opposition to the term “profound autism.” |
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| LEE WACHTEL (Kennedy Krieger Institute) |
 Dr. Wachtel received her undergraduate degree in 1993 in Romance Languages and Literatures from Princeton University, and her medical degree from the Johns Hopkins University School of Medicine in Baltimore, Maryland in 1998. She completed general, and child and adolescent psychiatry training at the University of Maryland psychiatry residency training program in Baltimore. She joined the Kennedy Krieger Institute in 2003, where she serves as Medical Director of the Neurobehavioral Unit, specializing in the care of children, adolescents and young adults with autism and intellectual disability who present with concomitant severe psychiatric and behavioral disturbance.
Dr. Wachtel is a Professor of Psychiatry at the Johns Hopkins School of Medicine. Her clinical and research interests focus on pediatric catatonia, particularly in autism spectrum disorders, with emphasis on repetitive self-injurious behaviors and optimal catatonia treatment paradigms including electroconvulsive therapy. Dr. Wachtel is the author of more than three dozen scientific manuscripts and textbook chapters, and has lectured extensively throughout the United States and abroad. |
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