FOR IMMEDIATE RELEASE; November 30, 2012
Director of Community Engagement
Autistic Self Advocacy Network
Phone: (202) 630-7477
Researchers with the Academic Autistic Partnership in Research and Education (AASPIRE), including community partners from the Autistic Self Advocacy Network (ASAN), found that Autistic adults report significantly worse health care experiences to their non-autistic peers.
The study included an online survey of 437 participants (209 autistic adults). Autistic adults reported more unmet healthcare needs, more frequent use of the Emergency Department, and less use of preventative services. They also reported lower satisfaction with provider communication, and less comfort in navigating the healthcare system or managing their health. Conclusions suggest the need for improved healthcare for Autistic individuals, including those who may have less perceived disability-related needs.
“This reinforces the need for meaningful action to address health disparities faced by Autistic adults,” said ASAN President Ari Ne’eman. “Currently, the federal definition of medically underserved populations does not include Autistic people and other groups of individuals with disabilities. These findings reinforce the need for meaningful change.”
AASPIRE has received a grant from the National Institute of Mental Health to make an interactive toolkit to improve primary care services for Autistic adults. More information including how to participate in this project is available at www.aaspire.org.
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.
The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism. Its activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research, and the development of Autistic cultural activities.