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Aspects of quality of life in adults diagnosed with autism in childhood: a population-based study.

Journal article
Authors Eva Billstedt
I Carina Gillberg
Christopher Gillberg
Published in Autism
Volume 15
Issue 1
Pages 7-20
ISSN 1362-3613
Publication year 2011
Published at Institute of Neuroscience and Physiology, Department of Psychiatry and Neurochemistry
Pages 7-20
Language en
Keywords Adaptation, Psychological, Adolescent, Adult, Autistic Disorder, Diagnosis, Psychology, Caregivers, Cohort Studies, Educational Status, Employment, Female, Follow-Up Studies, Humans, Interpersonal Relations, Male, Population Surveillance, Prospective Studies, Quality of Life, Psychology, Recreation, Social Behavior, Young Adult
Subject categories Child and adolescent psychiatry


The present study is a long-term prospective follow-up study of a population-based cohort of 120 individuals diagnosed with autism in childhood, followed into late adolescence/early adulthood. Specific aims of the study were to attempt to measure and study social aspects/quality of life in those 108 individuals with autism alive and available for study at the time of follow-up (13-22 years after original diagnosis). A newly constructed scale for rating 'autism-friendly environment'/quality of life was used alongside a structured parent/carer interview assessing current occupation, educational history, services provided, accommodation type, and recreational activities. The majority of the group with autism remained dependent on parents/caregivers for support in education, accommodation and occupational situations. In spite of this, the estimation of the study group's general quality of life was encouragingly positive. Nevertheless, there was an obvious need for improvements in the areas of occupation and recreational activities. Future studies need to look in more depth at the concept of an autism-friendly environment and develop more detailed quality of life assessment tools relevant for people in the autism spectrum.

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