We support research guided by compassion for lived experience, clarity in how profound autism is understood, and progress that leads to real-world change. Our funding prioritizes work that includes people with profound autism and strengthens the supports families rely on every day.
For decades, inconsistent terminology and exclusion criteria have made it difficult to include people with profound autism in research in a consistent and meaningful way. Without shared definitions, studies cannot be compared, replicated, or translated into policy and practice.
In 2025, a consensus research definition of profound autism was introduced at the International Society for Autism Research (INSAR) Annual Meeting.
Profound Autism Alliance helped fund this foundational work.
The definition was developed through a rigorous, multi-stakeholder process involving researchers, clinicians, autistic self-advocates, and family members. Its purpose is to provide a clear, consistent framework for research inclusion.
A new and clear research definition for profound autism was introduced at a panel at the 2025 International Society for Autism Research Annual Meeting in Seattle. We are grateful to the many researchers who participated in this important consensus project over the last year and extend our thanks to the Autism Science Foundation, which partnered with us to fund this work.
Consensus Statement
A shared research definition helps:
Intentionally include people with lifelong, 24/7 support needs in studies
Ensure appropriate research measures for minimal language and intellectual disability
Build a coherent evidence base across studies
Translate research findings into services, workforce training, and policy
This definition serves as a research tool to enhance accuracy, inclusion, and impact in scientific work.
Understanding profound autism through research only matters if it leads to improvements in daily life. That translation requires training, workforce development, and real-world application.
Profound Autism Alliance funds the ECHO Autism® Intense Behavior series, an evidence-based training program designed to support clinicians working with autistic individuals who experience severe emotional dysregulation, self-injury, and aggression.
The program uses a case-based learning model to connect community clinicians with interdisciplinary experts, helping translate research and best practices into everyday care.
The ECHO Autism® Intense Behavior series emphasizes:
Comprehensive assessment of underlying medical, psychiatric, environmental, and communication contributors
Evidence-based treatment approaches, including behavioral, medical, and communication strategies
Collaboration with families as partners in care
Lifespan considerations, including transition into adulthood.
169 clinicians participated nationwide
1,900+ instructional hours delivered
Clinician confidence increased across all domains related to intense behavior
Reported barriers related to training and preparedness declined
For families, this work supports a workforce that is more prepared, more confident, and more willing to engage with complex needs.
Profound Autism Alliance will continue to support research that:
Includes people with profound autism across the lifespan
Strengthens the evidence base for services and supports
Bridges the gap between research and real-world impact
Progress in research is strongest when it reflects the full range of support needs—and leads to meaningful change.
Questions? Please email us at [email protected].