Measuring severity, understanding complexity, and recognizing crisis drivers in high-support autism
“High support Autism: What We Know, What We Assume, and What We Must Demonstrate”
Abstract: Severe autism represents a heterogeneous but underserved segment of the spectrum (30%+), marked by high support needs, minimal verbal abilities, complex comorbidities, and under-representation in research. This keynote outlines the current conceptual instability around definitions and severity metrics, highlights structural biases in cohorts, and maps the central scientific gaps—biomarkers, mechanisms, longitudinal trajectories, and translational endpoints. The lecture sets the stage for a conference focused on rebuilding methodological foundations and establishing research priorities for high-support autism.
14:00–14:20 — OPENING SESSION
- Welcome & scientific rationale
- Why a meeting focused on severe autism
- Overview of the state-of-the-art paper
- Film screening
14:20–15:00 — OPENING KEYNOTE
“Severe Autism: What We Know, What We Assume, and What We Must Demonstrate”
15:00–15:30 — SYMPOSIUM 1
Rethinking Severe Autism: From ‘high support’ to Profound Autism throughout Definitions, Taxonomy & Measurement”
Abstract: This session examines why the field still lacks a stable and operational definition of “high support/severe/profound” autism. Speakers will address the coexistence of administrative (e.g., Lancet Commission) versus clinical definitions, the scarcity of validated severity cut-offs, and the exclusion of individuals with intellectual disability or minimal verbal ability from most studies and trials. Strategies for building inclusive cohorts, calibrating severity measures, and reporting recruitment flows transparently are proposed. This session provides the conceptual foundation for the entire congress, clarifying why definitions and measurement choices directly shape biological stratification, trial design, and clinical translation.
Talks:
- What Do We Mean by “Severe Autism”? Nosology & Operational Thresholds
- Underrepresented Profiles: Why Minimally/Non-Verbal & ID Individuals Rarely Enter Research Cohorts
15:45–16:00 — Transition
15:35–16:55 — SYMPOSIUM 2
“Clinical Complexity: Pain, Sleep, Sensory Overload & Comorbidities”
Abstract: High support autism frequently overlaps with hidden pain, autonomic dysregulation, aberrant sleep micro-architecture, epilepsy, gastrointestinal symptoms, and medical emergencies that shape functional severity. This symposium integrates findings from neurology, sleep medicine, autonomic neuroscience and internal medicine to illustrate how these factors alter behavior, learning, and adaptive functioning. Approaches for measurement, early detection, and research design are discussed.
Talks:
- Psychiatric Symptoms or Neuroimmune Dysregulation? A Clinical Framework for Interpreting Behavioral Change in Severe Autism
- Sleep as a Neurodevelopmental Regulator in Autism: arousal Instability, and Functional Outcomes
- Epilepsy: Unrecognized Drivers of Functional Severity
- ENT Disorders and Upper Airway Infections in Autism: From Hidden Inflammation to Neuroimmune Triggers
17:00–17:25 — Coffee Break
17:30–18:10 — SYMPOSIUM 3
“Severe Behavioral Phenotypes: Neurobiology of Self-Injury, Autonomic Crises & Aggression”
Abstract: Severe self-injurious behavior (SIB), aggression, and autonomic crisis episodes represent some of the most medically urgent and least understood phenotypes in high-support autism. This symposium examines converging neurobiological pathways—nociceptive dysfunction, endogenous opioid signaling, autonomic instability, neuroinflammatory triggers, and sensory-motor integration abnormalities—that drive extreme behavioral crises. Presentations will explore biomarkers of arousal dysregulation, the role of interoceptive pain abnormalities, early-warning physiological signatures, and the interface between medical distress and behavioral escalation. The session proposes mechanistically anchored frameworks for assessment and outlines research strategies capable of distinguishing behavioral, autonomic, and medical causes of crisis behavior.
Talks:
- Self-Injurious Behavior and Pain in Severe Autism: Current Hypotheses on Pain Perception and Defensive Responses
- Behavioral Crises in Severe Autism: Hypothesized Links to CNS Hyperresponsivity and Sensory Dysregulation
18:10–18:15 — Transition
18:15–19:35 — ASSOCIATION ANCHORING SESSION
“Why Biomedical Research Matters: Perspectives from Autism Organizations”
Abstract: Autism organizations outline the lived impact of diagnostic delays, unmet medical needs, sensory and behavioral crises, and fragmented services. Their perspective frames why mechanistic, biologically grounded research is essential to improve both care and long-term outcomes. The session anchors the congress in real-world priorities and underscores the urgency of translational science for high-support autism.
Talks:
- Clinical Complexity Through Lived Experience: Caregiver Perspective
19:35–19:40 — Transition
18:40–19:20 — POSTER AREA OPENING & NETWORKING
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