Profile and Predictors of Service Needs in ASD

Background: The rising prevalence of autism spectrum disorders (ASD) is straining health, education and community service systems. Tailoring supports and services to best meet families' needs could improve families’ quality of life and decrease burden on these systems over time, yet little is known about service needs from the perspective of families.

Objectives: This study evaluated service needs from the perspective of families. Specific objectives were to identify:

1. Families’ most frequently identified overall service needs;
2. Families’ most frequently identified unmet service needs;
3. Families’ best met service needs;
4. Child and/or family variables that predicted overall needs and unmet service needs.

Methods: 143 parents of a child with ASD (mean age = 9.8 years) completed a survey including demographic and descriptive information, an adapted version of the Family Needs Survey–Revised (FNS-R), and an open-ended question about their “single greatest service need”. Descriptive statistics were calculated to characterize the sample, and determine the degree to which items were identified as needs and those needs were met. Simultaneous multiple linear regression analyses were used to determine predictors of total and unmet needs. Qualitative responses were content analyzed.

Results: Based on the FNS-R, the most frequently identified overall needs were for information on current (82%) and future (79%) services, handling disruptive behaviors (77%), and support to find personal time (74%). The greatest unmet needs were for information on services available currently (39% unmet) and in the future (61% unmet), support to find personal time (43% unmet), and locating respite care (39% unmet). Most participants reported positive experiences with the funding available for services (73-85% needs met across items) and quality of professional support (68-94% needs met across items). The most frequently identified “single greatest service needs” were respite care (26%), planning for and availability of adult services (20%) and transparent information about services (19%). Decreased child's age and household income, disruptive behaviors, and increased maternal age predicted more total needs and unmet needs.

Conclusions: Information on services, handling disruptive behaviors, and parent and child respite support were key needs. However, these most frequently identified overall needs were often the greatest unmet needs. Age, disruptive behavior and income, but not language and intellectual abilities, predicted overall and unmet needs. Our discussion will include potential reasons for the identified predictors, and suggestions for how to target practices and policies to best meet families’ needs in the context of current resources.