Service Needs and Barriers for Children and Adults with ASD

Background: Research on children with ASD has shown that appropriate interventions, delivered at appropriate developmental periods, can lead to marked increases in functioning across a range of domains (for review, Warren et al., 2011). The ability to access appropriate services and supports also leads to a number of benefits for families, including alleviating financial burdens and reducing family distress (Bradford, 2010). Given the far-reaching effects of receiving services, it is important to ensure care is as accessible as possible. However a survey of caregivers of children and adults with ASD in Ontario found that a majority of individuals continue to face a number of barriers to accessing services. Given the importance of timely and effective supports, it is important to determine the specific needs and experiences of service delivery across the lifespan in order to tailor appropriate systems of care.

Objectives: To explore the experiences of service delivery for individuals with ASD across the lifespan by examining identified service needs and subsequent barriers to service for individuals aged 2 to 29.

Methods: Autism Ontario conducted an online survey for caregivers in May, 2018. It was distributed across our network, via partner organizations and Ontario’s regional autism providers. It was available in English and French, and focused on various aspects of service and support.

Results: There was a total of 1,475 respondents. The majority of respondents cared for male children (79.7%) and 16.7% indicated that they cared for more than one child with ASD. Children ranged in age from 2.0 years to 29.10 (M = 11.8, SD = 5.9). Respondents rated potential barriers to service on a 5-point likert scale. The largest barrier to service for all age groups was long waitlists, the second largest barrier to service differed by age group as did individuals’ top service need. See table 1 for details on service needs by age.

After controlling for child’s gender and region, affordability was rated as a significantly larger barrier to service for caregivers of children aged 12 and below compared to children 13 to 29 (F (4, 1,320) = 3.70, p = 0.005), while a lack of professionals who understand ASD and a lack of needed services were rated as significantly larger barriers to service for caregivers of children aged 9 to 29 compared to children below 9 years of age (Fs > 4.59, ps < 0.001). Factors including, difficulty getting to appointments, long waitlists, not knowing where to go to access services and services in non-preferred language were not significantly different across age groups (Fs < 1.21, ps > 0.05).

Conclusions: Individuals with ASD require different services and experience different barriers to accessing said service at different time points in their life. We will discuss the implications of these findings in regards to the tailoring of services and supports for individuals across the lifespan.