Skip to main content
SpringerLink
Log in

Assessing Quality of Life in Autism

  • Living reference work entry
  • First Online:
Encyclopedia of Autism Spectrum Disorders

  • 317 Accesses

Definition

Given the complex and diverse lives of individuals with autism spectrum disorder (ASD), it is valuable to apply a comprehensive conceptualization of quality of life (QoL) when assessing life course and treatment outcomes for individuals with ASD. In the general population, QoL is considered a multidimensional construct. For example, the World Health Organization defines subjective QoL as an “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (WHOQOL Group 1995, p. 1405). Accordingly, standardized measures of QoL in the general population typically include items in the physical, psychological, and social domains (Danckaerts et al. 2010). For individuals with developmental disabilities, including ASD, researchers have similarly applied a multidimensional framework to the study of QoL. One of the most commonly utilized definitions comes from...

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution

Institutional subscriptions

References and Readings

  • 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, 7–20.

    Article  PubMed  Google Scholar 

  • 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, 2707–2719.

    Article  PubMed  PubMed Central  Google Scholar 

  • Danckaerts, M., Sonuga-Barke, E. S., Banaschewski, T., Buitelaar, J., Döpfner, M., Hollis, C., et al. (2010). The quality of life of children with attention deficit/hyperactivity disorder: A systematic review. European Child & Adolescent Psychiatry, 19(2), 83–105.

    Article  Google Scholar 

  • Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 739–747.

    Article  PubMed  Google Scholar 

  • Hong, J., Bishop-Fiztpatrick, L., Smith, L., Greenberg, J. S., & Mailick, M. R. (2016). Factors associated with subjective quality of life of adults with autism spectrum disorder: Self-report vs maternal reports. Journal of Autism and Developmental Disorders, 46, 1368–1378.

    Article  PubMed  PubMed Central  Google Scholar 

  • Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcomes for children with autism. Journal of Child Psychology and Psychiatry, 45, 212–229.

    Article  PubMed  Google Scholar 

  • Jennes-Coussens, M., Magill-Evans, J., Koning, C. (2006). The quality of life of young men with Asperger syndrome: A brief report. Autism, 10(4), 403–414.

    Article  PubMed  Google Scholar 

  • Kamp-Becker, I., Schoroder, J., Remschmidt, H., & Bachmann, C. J. (2010). Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder. German Medical Science. Psychosocial Medicine, 7, 1–10. https://doi.org/10.3205/psm000065, URN: run:nbn:de:0183-psm000657.

    Google Scholar 

  • Kraemer, B. R., McIntyre, L. L., & Blacher, J. (2003). Quality of life for young adults with mental retardation during transition. Mental Retardation, 41, 250–262.

    Article  PubMed  Google Scholar 

  • Kuhlthau, K., Orlich, F., Hall, T. A., Sikora, D., Kovacs, E. A., Delahaye, J., & Clemons, T. E. (2010). Health-related quality of life in children with autism spectrum disorders: Results from the Autism Treatment Network. Journal of Autism and Developmental Disorders, 40, 721–729.

    Article  PubMed  Google Scholar 

  • Lee, L.-C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38, 1147–1160.

    Article  PubMed  Google Scholar 

  • Limbers, C. A., Heffer, R. W., & Varni, J. W. (2009). Health-related quality of life and cognitive functioning from the perspective of parents of school-aged children with Asperger’s syndrome utilizing the PedsQL. Journal of Autism and Developmental Disorders, 39, 1529–1541.

    Article  PubMed  Google Scholar 

  • McGovern, C. W., & Sigman, M. (2005). Continuity and change from early childhood to adolescence in autism. Journal of Child Psychology and Psychiatry, 46, 401–408.

    Article  PubMed  Google Scholar 

  • Power, M. J., Green, A. M., & The WHOQOL-Dis Group. (2010). Development of the WHOQOL disabilities module. Quality of Life Research, 19, 571–584.

    Article  PubMed  Google Scholar 

  • Renty, J., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10, 511–524.

    Article  PubMed  Google Scholar 

  • Ruble, L., & Dalrymple, N. (1996). An alternative view of outcomes in autism. Focus on Autism and Other Developmental Disabilities, 11, 3–14.

    Article  Google Scholar 

  • Schalock, R. L., & Keith, K. (1993). Quality of life questionnaire manual. Worthington: IDS.

    Google Scholar 

  • Sheldrick, R. C., Neger, E. N., Shipman, D., & Perrin, E. C. (2011). 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. https://doi.org/10.1007/s11136-011-9916-5.

    Article  PubMed  Google Scholar 

  • Shipman, D. L., Sheldrick, C., & Perrin, E. C. (2011). Quality of life in adolescents with autism spectrum disorders: Reliability and validity of self-reports. Journal of Developmental and Behavioral Pediatrics, 32, 85–89.

    Article  PubMed  Google Scholar 

  • Totsika, V., Felce, D., Kerr, M., & Hastings, R. P. (2010). Behavior problems, psychiatric symptoms, and quality of life for older adults with intellectual disability with and without autism. Journal of Autism and Developmental Disorders, 40, 1171–1178.

    Article  PubMed  Google Scholar 

  • Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39, 800–812.

    Article  PubMed  Google Scholar 

  • Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139.

    Article  PubMed  Google Scholar 

  • Verdugo, R. L., Schalock, R. L., Keith, K. D., & Stancliffe, R. J. (2005). Quality of life and its measurement: Important principles and guidelines. Journal of Intellectual Disability Research, 49, 707–717.

    Article  PubMed  Google Scholar 

  • Wang, M., Schalock, R. L., Verdugo, M. A., & Jenaro, C. (2010). Examining the factor structure and hierarchical nature of the quality of life construct. American Journal on Intellectual and Developmental Disabilities, 115, 218–233.

    Article  PubMed  Google Scholar 

  • WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558.

    Article  Google Scholar 

  • WHOQOL Group. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41(10), 1403–1409.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Waisman Center, University of Wisconsin-Madison, Madison, WI, USA

    Leann Smith DaWalt, Marsha R. Mailick, Jan S. Greenberg & Jinkuk Hong

Authors
  1. Leann Smith DaWalt
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Marsha R. Mailick
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Jan S. Greenberg
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jinkuk Hong
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Leann Smith DaWalt .

Editor information

Editors and Affiliations

  1. Yale Child Study Center, New Haven, Connecticut, USA

    Fred R. Volkmar

Rights and permissions

Reprints and permissions

Copyright information

© 2018 Springer Science+Business Media LLC

About this entry

Check for updates. Verify currency and authenticity via CrossMark

Cite this entry

DaWalt, L.S., Mailick, M.R., Greenberg, J.S., Hong, J. (2018). Assessing Quality of Life in Autism. In: Volkmar, F. (eds) Encyclopedia of Autism Spectrum Disorders. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-6435-8_102204-1

Download citation

  • DOI: https://doi.org/10.1007/978-1-4614-6435-8_102204-1

  • Received:

  • Accepted:

  • Published:

  • Publisher Name: Springer, New York, NY

  • Print ISBN: 978-1-4614-6435-8

  • Online ISBN: 978-1-4614-6435-8

  • eBook Packages: Springer Reference Behavioral Science and PsychologyReference Module Humanities and Social SciencesReference Module Business, Economics and Social Sciences

Publish with us

Policies and ethics

Search

Navigation