Projects
Community Based Participatory Research to Improve the Health Care of Autistic Adults
Like other adults with developmental disabilities, autistic adults face persistent disparities in health and health care. However, little is known about autism-specific barriers and facilitators to quality health care. Moreover, the insights of autistic adults are rarely incorporated into research about autism.
Our long-range goal is to use Community Based Participatory Research to improve the health and health care of autistic adults. The goal of our current projects is to build the partnerships, experience, skills, and pilot data necessary to develop tools for improving health care services for the community of autistic adults who use the Internet.
Our objective is to assess the barriers and facilitators to quality health care for autistic adults, particularly with respect to communication.
We are working on four inter-related studies:
An on-line survey of autistic adults to learn more about the on-line autistic community, community member's health care concerns, and recommendations for improvement.
A qualitative study using in-depth interviews with autistic adults, done through e-mail or instant messaging, to understand the experiences and recommendations of autistic adults as consumers of health care services.
A qualitative study using in-depth interviews with primary care providers, done through telephone, to understand the experiences and recommendations of primary care clinicians as providers of health care services to autistic adults.
Consideration of pubically available dialogue within the on-line autistic adult community about health care needs and recommendations.
All studies will address positive and negative experiences, with a specific focus on participants' information and accommodation needs and their ideas of how to improve communication or accessibility.