Abstract
Background: Autism spectrum disorder (ASD) is a complex developmental condition that affects the whole family. The gap between childrens’ needs and their satisfaction, especially regarding what concerns the presence of social and healthcare services, is still a source of burden, particularly after the transition to adulthood. Our study aimed to gather a comprehensive view on how parents of adults with ASD perceive (and interact with) health and social services, and how the provision of care impacts family quality of life with the aim to advise ASD intervention programs. The goal is to identify specific areas of change useful to influence autism intervention strategies so that they more effectively meet the needs of young people with autism and their families. Methods: We conducted two focus groups with parents of young adults with ASD. A semi-structured focus group methodology was adopted. The QoL conceptual framework guided data collection and analysis as part of a directed theory-driven content analysis approach. Results: The lack of structured care pathways and the low level of integration of different services were the main limits reported by parents during the focus group, while a shared positive perception of the experience conducted together as caring families emerged. Conclusions: The experience here reported claims for a greater role of the institutions in order to facilitate the building of networks that are really inclusive for persons with autism in society and to support the implementation of innovative solutions for the welfare system. Furthermore, parents stressed the need for the provision of support to the family.
Highlights
Autism spectrum disorder (ASD) is a complex developmental condition that involves persistent challenges in social interaction and communication, as well as restricted or repetitive interests and behaviours
In order to explore the experience of families of young adults with ASD requiring substantial support with health and social services, two focus groups were conducted
Focus groups allow participants to develop ideas collectively and construct a shared understanding of the experiences, expanding on their own individual priorities and perspectives (Smithson 2008). This is true in focus groups characterized by within-group homogeneity, as in our case, in which participants were all parents of young adults with autism requiring substantial support involved in the activities of an Italian social farm, the cooperative “Giuseppe Garibaldi” (CGG, Rome, Italy)
Summary
Autism spectrum disorder (ASD) is a complex developmental condition that involves persistent challenges in social interaction and communication, as well as restricted or repetitive interests and behaviours. Having a child with autism affects the whole family. International evidence on family’s burden due to ASD highlights a set of aspects which are a source of major concern for parents: the lack of communication with their children, the difficulties of managing behavioural aspects such as aggression and self-harm, the economic burden, the frequent job loss of at least one family member (more frequently the mother), and constraints in social and leisure activities [3,4]. Parents point out that, depending on the age of the child, the gap between needs and their satisfaction increases (that is, greater age and lower satisfaction), especially for what concerns the presence of services aimed to maximise participation in education, employment, and independent living for young adults with ASD [5]. Contacts with services appear to be more aimed at certifying the need for economic support and less dedicated to tackling the whole and complex clinical-therapeutic and social needs of young adults with ASD, as well as the challenges of daily life [6,7]
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