Child and adult factors related to quality of life in adults with autism

Journal of Autism and Developmental Disorders

Volumn 47, Issue 6, 2017, Pages 1830-1837

  Moss, Philippa ^a   Mandy, William ^b   Howlin, Patricia ^c,d  

^a GREAT ORMOND STREET HOSPITAL   (United Kingdom)

^b UNIVERSITY COLLEGE LONDON   (United Kingdom)

^c KING'S COLLEGE LONDON   (United Kingdom)

^d UNIVERSITY OF SYDNEY   (Australia)

Author keywords

Adult; Adult outcome; Autism; Quality of life

Indexed keywords

ADOLESCENT; ADULT; ADULTHOOD; AGED; ARTICLE; AUTISM; AUTISM DIAGNOSTIC INTERVIEW REVISED; CAREGIVER; CHILD; CHILD PSYCHIATRY; CHILDHOOD; CLINICAL OUTCOME; COGNITION; COHORT ANALYSIS; COMPULSION; CONTROLLED STUDY; CORRELATIONAL STUDY; DISEASE SEVERITY; FAMILY HISTORY SCHEDULE; FEMALE; FOLLOW UP; FUNCTIONAL STATUS ASSESSMENT; HUMAN; HUMAN RELATION; INDEPENDENCE; INDEPENDENT LIVING; INTELLIGENCE QUOTIENT; INTERPERSONAL COMMUNICATION; MAJOR CLINICAL STUDY; MALE; MENTAL HEALTH; PATIENT SATISFACTION; PRIORITY JOURNAL; PSYCHOLOGICAL WELL-BEING; QUALITY OF LIFE; QUALITY OF LIFE ASSESSMENT; SELF REPORT; SOCIAL INTERACTION; SYMPTOM; WECHSLER ADULT INTELLIGENCE SCALE; WHO QUALITY OF LIFE BRIEF QUESTIONNAIRE; WORK; MIDDLE AGED; PSYCHOLOGY;

ADULT; AGED; AUTISTIC DISORDER; CAREGIVERS; CHILD; FEMALE; HUMANS; MALE; MIDDLE AGED; QUALITY OF LIFE; SELF REPORT;

EID: 85016013885     PISSN: 01623257     EISSN: 15733432     Source Type: Journal    
DOI: 10.1007/s10803-017-3105-5     Document Type: Article

References (38)

1. Barneveld, P. S., Swaab, H., Fagel, S., van Engeland, H., & de Sonneville, L. M. (2014). Quality of life: A case-controlled longterm follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood. Comprehensive Psychiatry, 55(2), 302-310.
2. Biggs, E. E., & Carter, E. W. (2016). Quality of life for transition-age youth with autism or intellectual disability. Journal of Autism and Developmental Disorders, 46(1), 190-204.
3. Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population- based study. Autism, 15(1), 7-20.
4. Bishop-Fitzpatrick, L., Hong, J., Smith, L. E., Makuch, R. A., Greenberg, J. S., & Mailick, M. R. (2016). Characterizing objective quality of life and normative outcomes in adults with autism spectrum disorder: An exploratory latent class analysis. Journal of Autism and Developmental Disorders, 46(8), 1-13.
5. Bolton, P., Macdonald, H., Pickles, A., Rios, P., Goode, S., Crowson, M., et al. (1994). A case-control family history study of autism. Journal of Child Psychology and Psychiatry, 35(5), 877-900.
6. Chiang, H. M., & Wineman, I. (2014). Factors associated with quality of life in individuals with autism spectrum disorders: A review of literature. Research in Autism Spectrum Disorders, 8(8), 974-986.
7. Clark, B. G., Magill-Evans, J. E., & Koning, C. J. (2015). Youth with autism spectrum disorders self-and proxy-reported quality of life and adaptive functioning. Focus on Autism and Other Developmental Disabilities, 30(1), 57-64.
8. Egilson, S. T., Ólafsdóttir, L. B., Leósdóttir, T., & Saemundsen, E. (2016). Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers:Self-and proxy-reports. Autism, 21(2), 133-141.
9. Farley, M. A., McMahon, W. M., Fombonne, E., Jenson, W. R., Miller, J., Gardner, M., et al. (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Research, 2(2), 109-118.
10. Hare, D. J., Wood, C., Wastell, S., & Skirrow, P. (2015). Anxiety in Asperger’s syndrome: Assessment in real time. Autism, 19(5), 542-552.
11. Hawthorne, G., Herrman, H., & Murphy, B. (2006). Interpreting the WHOQOL-BREF: Preliminary population norms and effect sizes. Social Indicators Research, 77(1), 37-59.
12. Helles, A., Gillberg, I. C., Gillberg, C., & Billstedt, E. (2016). Asperger syndrome in males over two decades: Quality of life in relation to diagnostic stability and psychiatric comorbidity. Autism. doi:10.1177/1362361316650090.
13. Henninger, N. A., & Taylor, J. L. (2013). Outcomes in adults with autism spectrum disorders: A historical perspective. Autism, 17(1), 103-116. doi:10.1177/1362361312441266.
14. Hong, J., Bishop-Fitzpatrick, L., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2016). Factors associated with subjective quality of life of adults with autism spectrum disorder: Self-report versus maternal reports. Journal of Autism and Developmental Disorders, 46(4), 1368-1378.
15. Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2), 212-229.
16. Howlin, P. & Magiati, I. (2017). Autism spectrum disorder: Outcomes in adulthood. Current Opinion in Psychiatry (Online).
17. Howlin, P., Moss, P., Savage, S., & Rutter, M. (2013). Social outcomes in mid- to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children. Journal of American Academy of Child and Adolescent Psychiatry, 52(6), 572-581 e571. doi:10.1016/j.jaac.2013.02.017.
18. Howlin, P., Savage, S., Moss, P., Tempier, A., & Rutter, M. (2014). Cognitive and language skills in adults with autism: A 40-year follow-up. Journal of Child Psychology and Psychiatry, 55(1), 49-58. doi:10.1111/jcpp.12115.
19. Ikeda, E., Hinckson, E., & Krägeloh, C. (2014). Assessment of quality of life in children and youth with autism spectrum disorder: A critical review. Quality of Life Research, 23(4), 1069-1085.
20. Jonsson, U., Alaie, I., Löfgren Wilteus, A., Zander, E., Marschik, P. B., Coghill, D., & Bölte, S. (2016). Annual Research Review:Quality of life and childhood mental and behavioural disorders-a critical review of the research. Journal of Child Psychology and Psychiatry.
21. Kamio, Y., Inada, N., & Koyama, T. (2013). A nationwide survey on quality of life and associated factors of adults with high-functioning autism spectrum disorders. Autism, 17(1), 15-26.
22. Kamp-Becker, I., Schroder, J., Muehlan, H., Remschmidt, H., Becker, K., & Bachmann, C. J. (2011). Health-related quality of life in children and adolescents with autism spectrum disorder. Zeitschrift für Kinder- und Jugendpsychiatrie und Psychotherapie, 39(2), 123-131.
23. Le Couteur, A., Rutter, M., Lord, C., Rios, P., Robertson, S., Holdgrafer, M., & McLennan, J. (1989). Autism Diagnostic Interview:A standardized investigator-based instrument. Journal of Autism and Developmental Disorders, 19(3), 363-387.
24. Moss, P., Howlin, P., Savage, S., Bolton, P., & Rutter, M. (2015). Self and informant reports of mental health difficulties among adults with autism findings from a long-term follow-up study. Autism, 19(7), 832-841.
25. Pallant, J. (2007). SPSS survival manual (Vol. 3rd). Maidenhead:Open University Press.
26. Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756-770.
27. Pickles, A., Starr, E., Kazak, S., Bolton, P., Papanikolaou, K., Bailey, A., et al. (2000). Variable expression of the autism broader phenotype: Findings from extended pedigrees. Journal of Child Psychology and Psychiatry, 41(4), 491-502.
28. Pinto, D., Pagnamenta, A. T., Klei, L., Anney, R., Merico, D., Regan, R.,… Betancur, C (2010). Functional impact of global rare copy number variation in autism spectrum disorders. Nature, 466(7304), 368-372.
29. Power, M. J., & Green, A. M. (2010). Development of the WHOQOL disabilities module. Quality of Life Research, 19(4), 571-584.
30. Renty, J. O., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10(5), 511-524.
31. Rutter, M., Le Couteur, A., & Lord, C. (2003). The autism diagnostic interview-revised. Los Angeles: Western Psychological Services.
32. Sheldrick, R. C., Neger, E. N., Shipman, D., & Perrin, E. C. (2012). Quality of life of adolescents with autism spectrum disorders:Concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports. Quality of Life Research, 21(1), 53-57. doi:10.1007/s11136-011-9916-5.
33. Skevington, S. M., & McCrate, F. M. (2012). Expecting a good quality of life in health: Assessing people with diverse diseases and conditions using the WHOQOL-BREF. Health Expectations, 15(1), 49-62. doi:10.1111/j.1369-7625.2010.00650.x.
34. Tavernor, L., Barron, E., Rodgers, J., & McConachie, H. (2013). Finding out what matters: Validity of quality of life measurement in young people with ASD. Child: Care, Health and Development, 39(4), 592-601.
35. The WHOQOL GROUP (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychological Medicine, 28(3), 551-558.
36. van Heijst, B. F., & Geurts, H. M. (2015). Quality of life in autism across the lifespan: A meta-analysis. Autism, 19(2), 158-167.
37. Wechsler, D., Wycherley, R. J., & Benjamin, L. (1997). Wechsler adult intelligence scale: Administration manual (Vol. 3rd). London:The Psychological Corporation.
38. Woodman, A. C., Smith, L. E., Greenberg, J. S., & Mailick, M. R. (2016). Contextual factors predict patterns of change in functioning over 10 years among adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 46(1), 176-189.