Researchers with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), have found that autistic adults, who represent roughly 1 percent of the adult population in the U.S., report significantly worse health care experiences than their non-autistic peers.
The study included an online survey of 209 autistic adults and 228 non-autistic adults. Autistic adults reported more unmet healthcare needs, more frequent use of the Emergency Department, and less use of preventative services like Pap smears. They also reported lower satisfaction with provider communication, and less comfort in navigating the healthcare system or managing their health.
AASPIRE Co-Director and principle investigator of the study, Dr. Christina Nicolaidis, said, "As a primary care provider, I know that our healthcare system is not always set up to offer high quality care to adults on the autism spectrum. However, I was saddened to see how large the disparities were. We really need to find better ways to serve them."
AASPIRE is an academic-community partnership where academic researchers, autistic adults, and other community members work together throughout the project. AASPIRE is based at Oregon Health and Science University and partners with community organizations including the Autistic Self-Advocacy Network and the Autism Society of Oregon, as well as academic institutions including Portland State University, University of Indiana, and Syracuse University.
AASPIRE's community Co-Director, Dora Raymaker, noted "While I am discouraged by the findings, I am also encouraged by the direct involvement of the Autistic community in all parts of this project. In order to ensure research that is truly useful to autistic adults, it is critical to involve us directly in the process."
The study also has important implications related to the proposed changes to the definition of autism spectrum disorders. The new edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V) is expected in May 2013. The proposed changes have caused controversy, including concern that some people will no longer meet criteria for Autism Spectrum Disorders. The concern has been greatest for people who currently meet criteria for Asperger's Disorder or who do not have intellectual disabilities. Dr. Nicolaidis commented, "The existence of healthcare disparities in our sample, most of whom had diagnoses of Asperger's and/or high educational attainment, highlights the possible negative consequences of stricter criteria. Not having a diagnosis may deprive patients and their providers of insights, strategies, and accommodations to improve healthcare experiences."
AASPIRE has received a grant from the National Institute of Mental Health to make an interactive toolkit to improve primary care services for adults on the autism spectrum. More information, including how to participate in the project, is available at www.aaspire.org.
This article is published in the Journal of General Internal Medicine (JGIM). It promotes improved patient care, research, and education in primary care, general internal medicine, and hospital medicine. Learn more about JGIM at www.sgim.org/publications/journal-of-general-internal-medicine.