Priority Service Receipt of 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. These create age group-specific challenges in navigating service sectors. Further, individuals with ASD often have a high level of service need, which are often left unmet, compared to other individuals with disabilities of similar age. Knowing which services are currently considered priorities by caregivers, and identifying correlates and barriers to having those needs met, will shed light on the resource gaps in the care and support of individuals with ASD and inform policies to improve service access.

Objectives: The objective of this study was to identify differences in priority service receipt of individuals with ASD and the clinical, sociodemographic and systemic correlates of obtaining priority services across the lifespan. 

Methods: An online survey was administered across Canada through the Canadian Autism Spectrum Disorders Alliance, completed by 3251 caregivers reporting on 3319 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. Participants also identified their current top 5 (priority) needs from the same list of services. We calculated the number of priority needs that were currently met as a proportion of priority receipt. 

Results: Across the entire sample, 1048 of 3319 individuals (31.6%) had none of their priority needs met and 682 individuals (20.5%) had at least half of their priority needs met. The number of priority receipts decreased across the lifespan (F(4,3318)=21.7, p<.001); with preschool aged and elementary school age children receiving more priority services (respectively 1.9 ± 1.3 and 1.5 ± 1.3; mean ± SD) compared to adolescents and adults (1.2 ± 1.3). Priority receipt was correlated with various factors. In all age groups, the number of parent-directed service receipts was positively correlated with priority receipts. In preschool children, priority receipt was also related to ability to afford services (p<.001). In elementary school children, priority receipt was negatively correlated with child age (p<.001), the number of behavioural concerns (p=.006) and psychiatric diagnoses (p=.003) but positively correlated with the ability to afford services (p<.001), less barriers experienced (p=.002) and access to government funding (p<.001). In contrast, adolescent priority receipt was positively related to child age (p<.001), the number of chronic physical health conditions (p=.025), the presence of behavioural concerns (p=.024) and intellectual disability (p<.001), and access to government funding (p<.001). For adults, priority receipt was related to the presence of intellectual disability (p<.001) and the number of behavioural concerns (p=.042).

Conclusions: The results show the alignment of receipt with addressing priority needs in a large sample of individuals with ASD. Future analyses will identify how sociodemographic, clinical need, and systemic factors function together to predict priority service receipt in each age group.