Purpose:Increasing demand for autism services is straining service systems. Tailoring services to best meet families’ needs could improve their quality of life and decrease burden on the system. We explored overall, best, and worst met service needs, and predictors of those needs, for families of children with autism spectrum disorders.Methods:Parents of 143 children with autism spectrum disorders (2–18 years) completed a survey including demographic and descriptive information, the Family Needs Survey–Revised, and an open-ended question about service needs. Descriptive statistics characterize the sample and determine the degree to which items were identified and met as needs. Predictors of total and unmet needs were modeled with regression or generalized linear model. Qualitative responses were thematically analyzed.Results:The most frequently identified overall and unmet service needs were information on services, family support, and respite care. The funding and quality of professional support available were viewed positively. Decreased child’s age and income and being an older mother predicted more total needs. Having an older child or mother, lower income, and disruptive behaviors predicted more total unmet needs, yet only disruptive behaviors predicted proportional unmet need. Child’s language or intellectual abilities did not predict needs.Conclusion:Findings can help professionals, funders, and policy-makers tailor services to best meet families’ needs.
Although not inherent to the diagnosis, many individuals with autism spectrum disorders (ASD) display aggressive behavior. This study examined the experiences of families living with individuals with ASD who also demonstrate aggressive behaviors. Using a qualitative approach, semistructured interviews were conducted with parents of nine males with autism and aggression. Eight families’ homes also were observed. Through constant-comparison analysis of interview data, triangulated with home observations, three central processes were identified: deleterious impact on daily routines and well-being of family members, limited supports and services, and financial strain. Emergent themes included isolation, exhaustion, safety concerns, home expenses, respite needs, and limited professional supports and alternative housing. Examination of families’ experiences living with someone with ASD who is aggressive, and the impact of aggression on the supports and services that families receive, constitutes an important step in tailoring resources to best meet families’ needs.
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