Shifting Sands: Examining Social Support Needs of Children with ASD and Their Families across the Pathway of Development

Background: Social support is a social determinant of health that plays an important role in the well-being of parents as they care for their child(ren) with ASD. Social support includes formal resources (e.g., government funds) and informal help and engagement (e.g., family, friends). While it is intuitively recognized that social support needs shift with advancing age and changing circumstances across the life course, the nature and extent of needs for support over time and circumstance are unclear. Currently, little is known about the support needs of parents as they move through their child’s developmental transitions (e.g., diagnosis, school entry, transfer to high school, exit from high school, etc.).

Objectives: This qualitative study examined the following question: What types of support do parents of children with ASD need at varying points of child and family development (at diagnosis, entering primary school, entering high school, and exiting high school)?

Methods: Utilizing an interpretive description approach (within a larger study), group interviews were conducted with n=50 parents of children with a neurodevelopmental disability. In this presentation, we will focus only on parents of children with ASD. Data addresses participant experiences and identifies parental needs for social support and services over time.

Results: Findings offer support experiences and needs over time. Overall, accessed social support was commonly insufficient relative to support needs. Parents reported they required, by default, to independently seek needed supports and services. They described ongoing needs for navigational support and peer connection with other parents. At diagnosis, parents reportedly required information about ASD, service guidance and targeted navigational support; they sought external support that offered messages of hope for the future as they adjusted to the diagnosis of ASD. Once the child had reached a more stable point relative to resource access, parents needed ongoing support in their continuing adjustment and, in some cases, relationship stability amidst the challenges and ‘new norm’ of ASD. Upon school entry, support in managing changing relationships within the school system emerged. Stigma was increasingly noted over time as the child’s expression of ASD more visibly rendered differences from neurotypical peers. Upon high school entry, families expressed challenges due to fewer resources; they worried more about safety in unsupervised settings such as in school buses, and amidst potential (and actual) peer bullying toward their adolescent. Concerns about transition to adulthood more strongly emerged later in (and beyond) high school.

Despite nuanced differences and shifts across development, existing services were reported as common in terms of being insufficient. There was a reported lack of available knowledge about existing services and service needs at particular developmental stages.

Conclusions: These findings inform overall support planning as well as identify areas to refine along the developmental pathway, as per individual and family needs. Support needs emerge as continuing yet shifting, with increased focus warranted on anticipated needs, goal setting, and activity/targeted outcome planning. Recommendations for support delivery will be offered in the presentation, as will implications for program and policy development.