Perceived Support Needs of School-Aged Young People on the Autism Spectrum and Their Caregivers

With increasing demands for health, disability and education services, innovative approaches can help distribute limited resources according to need. Despite an increased focus on support needs within the clinical pathway and policy landscape, the body of research knowledge on this topic is at a relatively early stage. However, there appears to be a sense of unmet support needs and dissatisfaction with the provision of required support following an autism diagnosis amongst caregivers of young people on the spectrum. The primary aim of this study was to explore the perceived support needs of Australian school-aged young people on the spectrum and their caregiver(s). This was achieved using a phenomenographic Support Needs Interview conducted by occupational therapists during home-visits with caregivers of 68 young people on the spectrum (5-17 years). Qualitative data analysis resulted in two hierarchical outcome spaces, one each for young people and their caregivers, indicating interacting levels of support need areas that could be addressed through a combination of suggested supports. These support needs and suggested supports align with almost all chapters within the Body Functions, Activities and Participation and Environmental Factors domains of the International Classification of Functioning, Disability and Health. The overall goals of meeting these complex and interacting support needs were for the young people to optimize their functioning to reach their potential and for caregivers to ensure the sustainability of their caregiving capacity. A series of recommendations for support services, researchers and policy makers have been made to position support needs as central during the assessment, support and evaluation phases.