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

Autism. 2022 Jan;26(1):281-286. doi: 10.1177/13623613211027999. Epub 2021 Jul 2.

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.

Keywords: autism spectrum disorders; family functioning and support; health services.

MeSH terms

  • Adult
  • Autism Spectrum Disorder* / therapy
  • Autistic Disorder* / therapy
  • Family
  • Humans
  • Program Evaluation
  • Quality of Life
  • United States