Profound Autism

Severe and profound autism are not like the autism most people know or recognize. The term “profound autism” is new but is rapidly gaining recognition in the autism community, even as the definition continues to evolve.

It was first formally recognized in The Lancet commission on the future of care and clinical research in autism in 2022. The Centers for Disease Control and Prevention (CDC) issued its own, similar, definition the following year. Though the two definitions vary slightly, the key components are the same and are defined by the severity of the symptoms of autism, and by intellectual and language disability, rather than by autistic traits.

Approximately 27% of autistic people are profoundly autistic. At May Institute and the National Autism Center, we use the following definition for profound autism:

A profoundly autistic person has a diagnosis of autism spectrum disorder (ASD), requires lifelong 24-hour care, has a significant intellectual disability, and is non-verbal or minimally verbal.

Profound autism is not a diagnosis for which any parent is prepared. But there is hope, and there is a community of organizations ready to help.

Organizations like May Institute and the National Autism Center are experts in the care and treatment of children and adults with profound autism and help individuals by teaching important and essential life skills necessary for a person to remain safe and reach their full potential. Advocacy agencies including the National Council on Severe Autism and the Profound Autism Alliance are dedicated to advancing policy and regulations that support the current and future needs of profoundly autistic people. And family and community organizations abound that offer a place to come together with other families with shared experience, autism-friendly events, and information about local resources and services.

COMING SOON!

The National Autism Center at May Institute recognizes the need for additional resources and support for caregivers of profoundly autistic children. Profound Autism: A Parent’s Guide will be ready for distribution in the spring of 2025 and will help fill this gap. It is written for parents, family members, and caregivers of profoundly autistic children and is the first-of-its-kind parent guide dedicated to the unique needs of this population.