Mediators Between Receiving Early Interventions and Unmet Services Needs in Children: Findings from a Canadian National Survey

Background:  Navigating the service sectors for children with ASD is a challenge for many caregivers, leading to a high level of burden and distress. Having an ID changes the dynamics of how service access. The early developmental period is a sensitive window for clinical outcomes; however, it is not known how access to early intervention relates to outcomes such as receiving other services. Articulating the relationship between having accessed early intervention services and unmet service need through mediating factors will provide a better understanding of how families navigate services and ways to support them better.

Objectives:  The objective of this study was to identify the relationship between receiving early interventions and unmet service needs, and the demographic and clinical correlates for children with ASD across Canada, with and without ID.

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 on reports of 1704 children up to the age of 12 years. Participants indicated if they had ever received early intervention services, our independent variable. An unmet need score, our dependent variable, was created by summing the number of services they never received but would have liked to receive. Demographic, clinical and systemic factors were collected. Two mediator analyses, one for those with ASD and ID, and one for those with ASD alone, examined the factors that explained the relationship between getting early intervention services and unmet need.

Results:  Overall, the mean age of receiving an ASD diagnosis was 3.89 (SD=1.9) years, and 86% of the sample had received early intervention services. The number of unmet needs was 3.78 (SD=2.6). Between the ASD alone (n=705) and ASD+ID (n=999) groups, those with ASD alone were diagnosed later (p<.001), had less caregiver services (p<.001), endorsed less systemic barriers to accessing services (p<.05), had less service receipt (p<.01), less concerning behaviours (p<.001), and lower health function score (p<.001) as defined by body function categories in the International Classification of Functioning, Disability and Health framework. They were also less likely to be in financial trouble (p<.05). After controlling for age, ethnicity and number of years in Canada, for children with ASD+ID, accessing early intervention did not relate to the level of unmet need (p=.10). However, for those with ASD alone, accessing early intervention was related to lower unmet need (t=4.87, p<.001). Mediators of this relationship were having caregiver-directed services, less mental health concerns, less behavioural concerns, and a younger age of diagnosis.

Conclusions:  These results indicate that ID status plays a large role in how services are accessed. For individuals with ASD and no ID, access to early interventions led to less unmet need receipts, as a result of greater access to caregiver services and lower clinical need. In children with both ASD+ID, this relationship was not present. Discussion of the implications of these findings will follow.