Correlates of Barriers to Service Access for Individuals with ASD Across the Lifespan: Findings from a Canadian National Survey

Background:  Across the lifespan, individuals with Autism Spectrum Disorder (ASD) have many health, community, and social service needs. Service needs are often left unmet and place a high level of burden on individuals and their families. Identifying the barriers of access to each service and the sociodemographic, clinical and systemic correlates of various barriers will improve the quality of life for individuals through targeted changes in policy.

Objectives: The objective of this study was to identify the barriers to service access for different services and the sociodemographic, systemic, and clinical correlates of barriers across the lifespan.

Methods:  An online survey was administered across Canada through the Canadian Autism Spectrum Disorders Alliance, completed by 3251 caregivers reporting on 3317 family members with ASD. Analysis was done in an age-stratified manner. Current service use was operationalized as any service used in the last 6 months, from a list of 23 community and health services and an “other” category that was recoded as needed. From the same list, participants indicated which services were difficult to obtain and selected barriers to accessing services from a list of 10 and an “other” category.

Results:  The number of systemic barriers endorsed was 3.4 (SD=1.9) and increased across age groups (4 years and under: 2.8, SD=1.6; 5-11 year olds: 3.2, SD=1.7; 12-17 year olds: 3.6, SD=2; 18-24 year olds: 3.6, SD=2; 25 and older: 3.5, SD=2; F[3316,4]=14.12, p<.001). Across the sample, the most common barrier to accessing services was being on a waitlist (75%), followed by a lack of trained professionals (48.5%) and affordability (31.6%). Older individuals were more likely to report not obtaining services because of a lack of trained professionals (χ²=30.07, p<.001; e.g. 52.7% of 25 years and older vs 35.6% of 4 and under) and that diagnosis did not qualify for needed services (χ²=28.17, p<.001; e.g. 42.4% of 25 years and older vs 12% of 4 and under). More than half of the respondents in both adult groups reported that a barrier to access was being too old for the needed service. Predictors of the total number of barriers included financial trouble, receiving caregiver services, and multiple clinical factors (i.e., more mental health concerns, behavioural concerns, worse health score; all p’s <.001).

Conclusions: The results show the specific barriers to accessing services in a large sample of individuals with ASD. Future analyses will identify how sociodemographic, clinical need, and systemic factors predict barriers to different services in each age group. Discussion of the implications of these findings will follow.