Survey of Caregivers of Individuals with Profound Autism

Dear Parents and Caregivers,

We’re inviting caregivers of individuals with profound autism to take part in a 53-question online survey about caregiver experiences and needs. In this survey, we use the term “profound autism.” Some individuals and organizations may use the term “severe autism” to describe individuals who have similar or the same characteristics. For this survey, profound autism is defined according to the criteria outlined by the Lancet Commission (Lord et al., 2022). The criteria is provided in the next question.

The responses collected on this survey are anonymous and will be presented in summary format to help inform our understanding of caring for a child with profound autism. The survey will take approximately 20 minutes to complete.

Thank you for your time and for the care you provide every day.

With Appreciation,
Dr. Bridget Taylor and Kelly Della Rosa, MA, BCBA