Banging down doors: parents' experiences of gaining access to autism care services

Although a great amount of attention has been recently paid to the state of autism care services in Ontario, little of this attention has been focused on the services for school-aged children and the services in rural-remote regions. This study presents the access experiences of three parents of school-aged children (ages 4-12) in Northwestern Ontario. Parents take on the role of the Navigator-Advocate in order to facilitate access to services for their child in three identified systems: education, health and medical services, and community-based services. Key themes in parents’ experiences include having their experience of a service being dependent on a particular individual, a lack of compassionate understanding from others, insufficiently educated service providers, and exclusion. Parents’ experiences of access could be ameliorated through the development of an integrated care model for autism that is responsive to navigational experiences and the geographical and human resource challenges of Northwestern Ontario.