Clinical Features of Children at Risk of Profound Autism

The concept of profound autism was coined in 2021 to better describe and understand the needs of autistic people with low cognitive and adaptive functioning skills and limited verbal communication. We sought to examine the clinical and demographic features of children referred to a multidisciplinary diagnosis and assessment clinic who were at risk of profound autism and those that did meet the definition of profound autism.

Participants were 513 autistic children aged 1-16 years seen in a large diagnosis and assessment clinic for a multidisciplinary assessment of social, communication, adaptive, cognitive/developmental skills and behaviour.

A quarter of children presenting to the assessment service with autism also met the 'at risk' profound criteria. These children were of younger age (Age = 1.79 years) at first concern and at diagnosis (Age = 3.93 years) than children in the not profound group. They also had more concerns pertaining to elopement (escape from the caregiver's care).

These findings add to our understanding of the characteristics of children who are at risk of profound autism. These findings have implications for clinical practice, including informing assessment processes, need for longitudinal follow up assessment, support planning and helping diagnosticians determine the appropriate level of support needed. Furthermore, these findings support calls for consideration of this group in policy planning, funding and earlier service access and ongoing follow up.