The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study.

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.

Life-long individual planning in children with developmental disability: the active role of parents in the Italian experience.

Many young adults with neurodevelopmental disorders experience poor transition outcomes in key areas, including employment, health care, and independent living. Innovative welfare models highlight the importance of involving the local community, and in particular the parents, as important stakeholders capable to generate services and affect local economy. As indicated by the World Health Organization, the availability of person-centered responses, also providing a health budget, appears to be the basis for taking into account person's rights to self-determination. Health services and local stakeholders could play an important role to facilitate the implementation of support networks that are functional for an effective social inclusion. In order to improve current practices in transitioning to adulthood, it is of paramount importance to collect and learn from the living experience of people with neurodevelopmental disabilities and their families.

Peer and Teacher-Selected Peer Buddies for Adolescents With Autism Spectrum Disorders: The Role of Social, Emotional, and Mentalizing Abilities.

This study examined mentalizing abilities, social behavior, and social impact of adolescents who expressed the willingness to become peer buddies for adolescents with Autism Spectrum Disorders, and adolescents selected by their teachers and peers. Twenty-seven teachers and 395 adolescents from public high schools completed mentalizing abilities, social status, behavioral, and peer buddy nomination measures. Findings suggest that social status and preference play a significant role in the selection of peer buddies by both teachers and classmates. Furthermore, more advanced Theory of Mind (ToM) abilities and the engagement in prosocial behaviors differentiated peers selected as buddies from other classmates. When compared with nonparticipating students, adolescents who expressed willingness to participate were more often girls, and were more prosocial. Agreement between teacher and peer nominations of best peer was moderate.