Long-term outcome of autistic spectrum disorder: a retrospective case study in a southern italian region

Abstract

BackgroundAutism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder, characterized by impaired social communication and restricted and repetitive behaviours, as well as associated features including intellectual disability and impaired sensorimotor function.Despite a growing interest in this devastating disorder for families and young parents, there are no certainties as regards its aetiology, although a significant genetic background is considered to be important.Since there is little information about the social adaptation and quality of life of patients with Autism Spectrum Disorder, we decided to study and evaluate the long-term outcome and quality of life in a sample of children, adolescent and young adults.MethodsThis is a case study of subjects diagnosed with ASD and followed by clinics and rehabilitation centers in Campania region, in the south of Italy.The study sample was composed by 110 patients (83 males, 27 females), aged between 8.1 and 28.0 years (mean 20.6; median 21.2; SD ± 4.85), recruited in 8 rehabilitation centers of Campania region.A follow-up interview was performed by means of a questionnaire administered to the parents/caregivers of patients at a mean age of their son/daughter of 20.6 years (median 21.2 years; range 8.1-28.0).ResultsReports from parents or caregivers show an overall improvement with regard to social and adaptive abilities in a group of teen-agers and young adults with ASD.Major concerns on significant quality of life parameters such as independent living, work experiences, friendships and relationships, accommodation type, recreational activities and personal autonomy were persisting.ConclusionsThe present study shows an overall improvement with regard to social and adaptive abilities in a large number of subjects. Considerable problems are related to autonomy, employment opportunities and social relationships of these patients. Parents need more recreational activities and continuous support with facilities for families.

Long-term outcome of children with autism who received different forms of early intervention during their preschool years: a pilot study of 15 young adults

“…The employment level of adults with autism varies between studies. Some show results similar to ours ( 10 , 38 , 39 ), whereas others report higher (13.2%) employment participation without support, where the most able individuals were working independently or self-employed ( 2 ). Still higher (21.8%) employment rate was reported in a Japanese study, which at that time reflected prosperous economic conditions with high demand for labor ( 40 ).…”

“…Parents were generally satisfied with the services provided through secondary school, but at present, they expressed concerns regarding leisure activities, work, and living arrangements. This is consistent with the major parental concerns reported in a recent study in a somewhat different culture in southern Europe ( 38 ). This supports the notion that provision of services for adults with autism has not kept up with the development and growth of services available for the younger age groups and needs to be given greater attention.…”

“…However, almost half (46.7%) of the participants had at least one friend. In other comparable studies, the rate is somewhat lower, or ranging from 12% to 33% ( 2 , 8 , 10 ), and in one study, friendships were rarely reported ( 38 ).…”

“…All the participants had attended mainstream schools where they received support and one had graduated from a university. Generally, there is a great variability in findings on school attendance among individuals with autism, where most of them have either been in special schools or provisions ( 8 , 10 ), or in regular schools with support ( 2 , 38 ). Only a few individuals, in comparable longitudinal studies, have attended or graduated from a university ( 2 , 8 , 10 , 38 ).…”

Equity, acceptability and feasibility of using polyunsaturated fatty acids in children and adolescents with autism spectrum disorder: a rapid systematic review

“…Children and adolescents suffering from ASD need support from health and care services, doctors, pharmacies and hospitals all their lives. However, too many children with ASD wait far too long before obtaining a diagnosis through the National Health Service and before obtaining the care and support they need [5]. In addition, many individuals with ASD continue to have significantly worse physical and mental health than the general public and are at greater risk of dying early [6].…”