Distilling innovative US autism care programs that address widely perceived unmet patient and family needs

Abstract

Current mainstream care for autistic individuals is fragmented, narrow, and poorly individualized. To better describe cutting-edge autism care, we searched for care programs in the United States that had been collaboratively designed with patients and families and that carry the highest potential to improve the quality of life of autistic individuals and their families. Using a modified Delphi method, we gathered input via conversations and surveys from 55 autistic adults, family members, practicing clinicians, and autism specialized researchers. As a result, 90 innovative autism care programs were nominated. We distilled these nominations to 15 programs across the United States by applying researcher-selected criteria, such as providing services actively and having data on program effectiveness. Then, we recruited 10 experts to rate the novelty, clinical benefits to individuals, clinical benefits to family caregivers, care costs for autistic individuals, societal costs, adaptability, and feasibility of the 15 programs. Common features of the 15 programs include care coordination and integration, care delivery, payment, and providing care in underserved clinical areas. Lay abstract Currently, the quality of care for autistic individuals is not good. Many care services for autistic individuals are not well coordinated, nor are they tailored. We wanted to find out a better model for autism care and believed that the autism community knows where these programs are. So, we had conversations with and surveyed 55 autistic adults, family members, clinicians, and researchers. They shared 90 innovative autism care programs that had been collaboratively designed with patients and families and that are likely to improve the quality of life of autistic individuals and their families. We then narrowed down the 90 nominated programs to 15 programs across the United States by applying researcher-selected criteria, such as providing services actively and having data on program effectiveness. We compiled a list of these innovative, quality autism care programs.