title: Quality of life: a case-controlled long-term follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood.
abstract: BACKGROUND
  Long term outcome in childhood autism spectrum disorders (ASD) was evaluated by studying quality of life (QoL) in young adulthood in comparison to the outcome of other child psychiatric disorders.
  
  
  METHODS
  In this follow-up study, objective and subjective QoL of 169 high-functioning (IQ>70) adults with ASD (19 to 30 years) was contrasted with QoL data of age matched adults diagnosed with attention deficit/hyperactivity disorder (N=85), disruptive behaviour disorders (N=83), and affective disorders (N=85) during childhood. The mean follow-up period of the ASD patients was 13.9 years. Objective QoL included marital status, living arrangements, level of education, employment, and usage of mental health care. Subjective QoL included satisfaction concerning living arrangements, work or education, physical condition, partner relationship, social relationships, state of mind, and future perspective.
  
  
  RESULTS
  QoL was more compromised in adults diagnosed with ASD in childhood than in adults with other psychiatric disorders in childhood. A relatively large proportion of the adults with ASD were single, few lived with a partner or a family and many of them were institutionalized. Adults with ASD had lower educational levels, relatively few had paid employment and many were social security recipients, as compared to the other psychiatric patients. In case the adults with ASD used medication, 47% used anti-psychotics. Regarding the subjective QoL, the adults with ASD were less satisfied about their work or education, partner relationship, and future perspective than the other groups. Even when highly educated adults with ASD were compared to highly educated adults diagnosed with other childhood disorders, the QoL appeared to be more disadvantageous in adults with ASD.
  
  
  CONCLUSIONS
  Many studies have shown that QoL is threatened in psychiatric patients, but findings of this study indicate that young high-functioning adults diagnosed with ASD in childhood are at relatively high risk for poor QoL compared to other childhood psychiatric disorders.
authors.affiliation: Department of Clinical Child and Adolescent Studies, Leiden University, Leiden, The Netherlands. Electronic address: barneveldps@fsw.leidenuniv.nl.
authors.forename: Petra S
authors.initials: PS
authors.lastname: Barneveld
authors.affiliation: Department of Clinical Child and Adolescent Studies, Leiden University, Leiden, The Netherlands; Leiden University, Leiden Institute for Brain and Cognition, Leiden, The Netherlands.
authors.forename: Hanna
authors.initials: H
authors.lastname: Swaab
authors.affiliation: Department of Clinical Child and Adolescent Studies, Leiden University, Leiden, The Netherlands.
authors.forename: Selene
authors.initials: S
authors.lastname: Fagel
authors.affiliation: Department of Child and Adolescent Psychiatry, Rudolf Magnus Institute of Neuroscience, University Medical Centre Utrecht, Utrecht, The Netherlands.
authors.forename: Herman
authors.initials: H
authors.lastname: van Engeland
authors.affiliation: Department of Clinical Child and Adolescent Studies, Leiden University, Leiden, The Netherlands; Leiden University, Leiden Institute for Brain and Cognition, Leiden, The Netherlands.
authors.forename: Leo M J
authors.initials: LM
authors.lastname: de Sonneville
mesh_terms: D000328:Adult; D019958:Attention Deficit and Disruptive Behavior Disorders / Q000523:psychology*; D016022:Case-Control Studies; D002659:Child Development Disorders, Pervasive / Q000523:psychology*; D004651:Employment / Q000523:psychology; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D017533:Marital Status; D008605:Mental Health Services / Q000706:statistics & numerical data; D019964:Mood Disorders / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D013997:Time Factors; D055815:Young Adult