Today, we are excited to share an important milestone for profound autism research. A peer-reviewed paper titled Developing a Consensus Research Definition for Profound Autism Using a Modified Delphi Method has been published in Molecular Autism. This publication represents another important step in improving research for people with profound autism.
You may be wondering why a research definition matters. The answer is simple: better research begins with a shared language.
When researchers use the same definition, they can compare findings across studies, better understand health needs, evaluate treatments and supports, and build the evidence needed to improve healthcare and public policy. This also informs potential changes to diagnostic categories.
Families have waited far too long for answers, access to quality healthcare, and meaningful supports. We know the need is urgent. While this publication will not change care overnight, it provides an important foundation for the research that can improve health, connection, and quality of life in the years ahead.
A couple of points are especially important to understand:
This does not directly change the DSM. A consensus research definition is an important step toward building the scientific evidence that informs future DSM discussions.
An intellectual disability is not required to meet this research definition. Some people meet the definition based on their communication and support needs. At the same time, intellectual disability should never be minimized or stigmatized. Recognizing intellectual disability helps ensure people receive the care, services, and opportunities they deserve.
We've updated our website with a summary of the paper and information about what this means for families, clinicians, researchers, and policymakers.
