Overview
Rural families with children who may be on the Autism Spectrum Disorder experience reduced access to assessment and diagnosis compared to their urban counterparts due to the following factors:
- Geographic inequities and travel burden:Geographical isolation and the need to travel long distances to access healthcare services remain the most significant barriers for rural families seeking to access to assessment, diagnosis, and support.
- Financial strain: Despite a publicly funded healthcare system, rural families continue to face considerable financial hardship sustained by substantial direct and indirect OOP costs. Direct expenses include travel, meals, and accommodation, while indirect expenses include the loss of income associated with ongoing caregiving and childcare costs for siblings.
- Psychosocial stress: The cumulative demands of navigating a fragmented system and coordinating care can significantly disrupt family life and contribute to caregiver burnout.
Publicly-funded wait times for assessment ranging from 18 months to over two years may exacerbate challenges experienced by rural children and families in the context of ASD. Families who wish to receive a diagnosis more quickly may pursue a private assessment; however, these services can cost thousands of dollars, making them widely inaccessible to most. Since provincial ASD funding levels drop significantly from $22,000/year before the age of 6 to $6,000/year after the age of 6, delayed diagnosis limits access to intensive early interventions during the critical developmental window, which can shape long-term outcomes for children and their families (Gustafson, 2024).
The project, a collaboration between the Centre for Rural Health Research, BC Rural Health Network, and Autism BC seeks to:
- Quantify the direct and indirect OOP costs associated with travelling for an ASD assessment and support services for families in rural and remote areas of BC.
- Explore in-depth the experiences, barriers and emotional/ psychological impacts associated with travelling for an ASD assessment and support services for families in rural and remote areas of BC.
Your input will be used to advocate for policy changes to address the inequities faced by rural families trying to access care.
Learn More or Participate:
This project is currently recruiting for rural participants to participate by completing a survey. We invite you to complete the survey if you are:
- 18 years of age or older
- The parent or guardian of an autistic child or youth (age 0-18 years) or currently seeking an ADS assessment for your child
- Live in a rural or remote community in British Columbia
Access the survey at this link!
For more information, please contact the Project Coordinator, Taryn Murray at tmurraay@student.ubc.ca
Research Team:
Jude Kornelsen, PhD
Associate Professor, Co-Director, Centre for Rural Health Research
Taryn Murray, BSc
Project Coordinator
Paul Adams
Executive Director, BC Rural Health Network
Sharon Grattan
Program Manager, Autism BC
Suzanne Perreault
Executive Director Autism BC
Research Coordinator, Centre for Rural Heath Research
