Youth with autism spectrum disorders: Self- and proxy-reported quality of life and adaptive functioning

Focus on Autism and Other Developmental Disabilities

Volumn 30, Issue 1, 2015, Pages 57-64

  Clark, Brenda G ^a,b   Magill Evans, Joyce E ^a   Koning, Cyndie J ^b  

^a UNIVERSITY OF ALBERTA   (Canada)

^b GLENROSE REHABILITATION HOSPITAL   (Canada)

Author keywords

adaptive skills; quality of life; self report

Indexed keywords

ADAPTIVE BEHAVIOR; ADOLESCENT; ADULT; ARTICLE; AUTISM; CANADIAN; CLINICAL ARTICLE; FATHER; FEMALE; HOME; HUMAN; KIDSCREEN 52; MALE; MOTHER; PARENT; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; SCHOOL; SCORING SYSTEM; SELF REPORT; SOCIAL INTERACTION; SOCIAL SUPPORT; YOUNG ADULT;

EID: 84922933792     PISSN: 10883576     EISSN: 15384829     Source Type: Journal    
DOI: 10.1177/1088357614522289     Document Type: Article

References (35)

1. Diagnostic and statistical manual of mental disorders. 1994 ). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. Washington, DC: Author ; 1994
2. Diagnostic and statistical manual of mental disorders. 2000 ). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Washington, DC: Author ; 2000
3. Diagnostic and statistical manual of mental disorders. 2013 ). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author. Arlington, VA: Author ; 2013
4. Baio J.. Prevalence of Autism Spectrum Disorders - Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. Morbidity and Mortality Weekly Report. 2012 ; 61: 1-19
5. Billstedt E., Gillberg I. C., Gillberg C.. Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism. 2011 ; 15: 7-20
6. Davis E., Nicolas C., Waters E., Cook K., Gibbs L., Gosch A., Ravens-Sieberer U.. Parent proxy and child self-reported health-related quality of life: Using qualitative methods to explain the discordance. Quality of Life Research. 2007 ; 16: 863-871
7. Eaves L. C., Ho H. H.. Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders. 2008 ; 38: 739-747
8. Ellert U., Ravens-Sieberer U., Erhart M., Kurth B. M.. Determinants of agreement between self-reported and parent assessed quality of life for children in Germany results of the German health interview and examination survey for children and adolescents (KiGGS). Health Quality of Life Outcomes. 2011 ; 23: 102
9. Happe F. G.. Communicative competence and theory of mind in autism: A test of relevance theory. Cognition. 1993 ; 48: 101-119
10. Harrison P. L., Oakland T. Adaptive Behavior Assessment System. 2008 ). Adaptive Behavior Assessment System (2nd ed.). Los Angeles, CA: Western Psychological Services. Los Angeles, CA: Western Psychological Services ; 2008
11. Howlin P.. Outcome in adult life for more able individuals with autism or Asperger syndrome. Autism. 2000 ; 4: 63-83
12. Howlin P., Goode S., Hutton J., Rutter M.. Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, and Allied Disciplines. 2004 ; 45: 212-229
13. Howlin P., Yates P.. The potential effectiveness of social skills groups for adults with autism: Information update. Autism. 1999 ; 3: 299-307
14. Humphrey N., Lewis S.. Make me normal: The views and experiences of pupils on the autistic spectrum in mainstream secondary schools. Autism. 2008 ; 12: 23-46
15. Jennes-Coussens M., Magill-Evans J., Koning C.. The quality of life of young men with Asperger syndrome: A brief report. Autism. 2006 ; 10: 403-414
16. Kamp-Becker I., Schroder J., Muehlan H., Remschmidt H., Bachmann C. J.. Health-related quality of life in adolescents and young adults with high functioning autism spectrum disorder. GMS Psychology-Social-Medicine. 2010 ; 7: 1-10
17. The KIDSCREEN questionnaires-Quality of life questionnaires for children and adolescents. Lengerich, Germany: Pabst Science Publishers ; 2006
18. Kuhlthau K., Orlich F., Hall T. A., Sikora D., Kovacs E. A., Delahaye J., Clemons T. E.. Health-related quality of life in children with autism spectrum disorders: Results from the autism treatment network. Journal of Autism and Developmental Disorders. 2010 ; 40: 721-729
19. Lee L. C., Harrington R. A., Louie B. B., Newschaffer C. J.. Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders. 2008 ; 38: 1147-1160
20. Limbers C. A., Heffer R. W., Varni J. W.. Health related quality of life and cognitive functioning from the perspective of parents of school-aged children with Asperger's syndrome utilizing the Peds QL. Journal of Autism and Developmental Disorders. 2009 ; 39: 1529-1541
21. Lord C., Venter A. High functioning individuals with autism. New York, NY: Plenum Press ; 1992
22. Plimley L. A.. A review of quality of life issues and people with autism spectrum disorders. British Journal of Learning Disabilities. 2007 ; 35: 205-213
23. Rapley M. Quality of life research: A critical introduction. London, England: SAGE ; 2003
24. Ravens-Sieberer U., Gosch A., Rajmil L., Erhart M., Bruil J., Duer W.. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research. 2005 ; 5: 353-364
25. Renty J. O., Roeyers H.. Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism. 2006 ; 10: 511-524
26. Saldana D., Alvarez R. M., Lobaton S., Lopez A. M., Moreno M., Rojano M.. Objective and subjective quality of life in adults with autism spectrum disorders in southern Spain. Autism. 2009 ; 13: 303-316
27. Sheldrick R., Neger E. N., Shipman D., Perrin E. C.. Quality of life of adolescents with autism spectrum disorders: Concordance among adolescents' self-reports, parents' reports, and parents' proxy reports. Quality of Life Research. 2012 ; 21: 53-57
28. Shipman D. L., Sheldrick C., Perrin E.. Quality of life in adolescents with autism spectrum disorders: Reliability and validity of self-reports. Journal of Developmental and Behavioral Pediatrics. 2011 ; 32: 85-89
29. Siegel B. The world of the autistic child: Understanding and treating autistic spectrum disorders. New York, NY: Oxford University Press ; 1996
30. Sprangers M. A., Schwartz C. E.. Integrating response shift into health-related quality of life research: A theoretical model. Social Science & Medicine. 1999 ; 48: 1507-1515
31. Strang J. F., Kenworthy L., Daniolos P., Case L., Willis M., Martin A., Wallace G.. Depression and anxiety symptoms in children and adolescents with autism spectrum disorders without intellectual disability. Research in Autism Spectrum Disorder. 2012 ; 6: 406-412
32. Tavernor L., Barron E., Rodgers J., McConachie H.. Finding out what matters: Validity of quality of life measurement in young people with ASD. Child: Care, Health & Development. 2013 ; 39: 592-601
33. Varni J., Seid M., Rode C. A.. The PEDSQL measurement model for the Pediatric Quality of Life Inventory. Medical Care. 1999 ; 36: 126-139
34. Wallander J. L., Schmitt M., Koot H. M.. Quality of life measurement in children and adolescents: Issues, instruments and applications. Journal of Psychology. 2001 ; 57: 571-585
35. World Health Organization. (2002). International classification of functioning, disability and health. Retrieved from http://www.who.int/classifications/icf/en/