We examined factors related to subjective quality of life (QoL) of adults with autism spectrum disorder (ASD) aged 25–55 (n = 60), using the World Health Organization Quality of Life measure (WHOQOL-BREF). We used three different assessment methods: adult self-report, maternal proxy-report, and maternal report. Reliability analysis showed that adults with ASD rated their own QoL reliably. QoL scores derived from adult self-reports were more closely related to those from maternal proxy-report than from maternal report. Subjective factors such as perceived stress and having been bullied frequently were associated with QoL based on adult self-reports. In contrast, level of independence in daily activities and physical health were significant predictors of maternal reports of their son or daughter’s QoL.
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Achenbach, T., & Rescorla, L. (2003). Manual for the ASEBA adult forms & profiles. Burlington, VT: University of Vermont, Research Center for Children, Youth, & Families.
Bishop-Fitzpatrick, L. (2015). Social functioning in adults with autism spectrum disorder: The role of biological stress response and psychosocial stress. Doctoral dissertation, University of Pittsburgh, Pittsburgh, PA.
Bishop-Fitzpatrick, L., Mazefsky, C. A., Minshew, N. J., & Eack, S. M. (2015). The relationship between stress and social functioning in adults with autism spectrum disorder and without intellectual disability. Autism Research, 8(2), 164–173.
Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(2), 266–277.
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.
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.
Cohen, S., Kamarck, T., & Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24(4), 385–396.
Constantino, J. N., & Gruber, C. P. (2005). The social responsiveness scale. Los Angeles, CA: Western Psychological Services.
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 and Adolescent Psychiatry, 19(2), 83–105.
de Vries, M., & Geurts, H. (2015). Influence of autism traits and executive functioning on quality of life in children with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 45(9), 2734–2743.
Gerber, F., Baud, M., Giroud, M., & Carminati, G. G. (2008). Quality of life of adults with pervasive developmental disorders and intellectual disabilities. Journal of Autism and Developmental Disorders, 38(9), 1654–1665.
Gerber, F., Bessero, S., Robbiani, B., Courvoisier, D. S., Baud, M. A., Traoré, M. C., et al. (2011). Comparing residential programmes for adults with autism spectrum disorders and intellectual disability: Outcomes of challenging behaviour and quality of life. Journal of Intellectual Disability Research, 55(9), 918–932.
Gosling, S. D., Rentfrow, P. J., & Swann, W. B, Jr. (2003). A very brief measure of the Big-Five personality domains. Journal of Research in Personality, 37(6), 504–528.
Hirvikoski, T., & Blomqvist, M. (2015). High self-perceived stress and poor coping in intellectually able adults with autism spectrum disorder. Autism, 19(6), 752–757.
Idler, E., & Benjamini, Y. (1997). Fifteen years of self-assessed health. Journal of Health and Social Behavior, 38(1), 21–37.
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.
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.
Kamp-Becker, I., Schröder, J., Remschmidt, H., & Bachmann, C. J. (2010). Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder. GMS Psycho-Social-Medicine, 7, 1–10.
Klassen, A. F., Miller, A., & Fine, S. (2006). Agreement between parent and child report of quality of life in children with attention-deficit/hyperactivity disorder. Child: Care, Health and Development, 32(4), 397–406.
Kuhlthau, K., Orlich, F., Hall, T. A., Sikora, D., Kovacs, E. A., Delahaye, J., et al. (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(6), 721–729.
Lee, I. A., & Preacher, K. J. (2013). Calculation for the test of the difference between two dependent correlations with one variable in common [Computer software]. http://quantpsy.org.
Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism diagnostic interview-revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24(5), 659–685.
Maenner, M. J., Smith, L. E., Hong, J., Makuch, R., Greenberg, J. S., & Mailick, M. R. (2013). Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal, 6(1), 8–17.
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.
Schalock, R. L. (2004). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48(3), 203–216.
Schroeder, J. H., Cappadocia, M. C., Bebko, J. M., Pepler, D. J., & Weiss, J. A. (2014). Shedding light on a pervasive problem: A review of research on bullying experiences among children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(7), 1520–1534.
Seltzer, M. M., Greenberg, J. S., Taylor, J. L., Smith, L. E., Orsmond, G. E., Esbensen, A., et al. (2011). Adolescents and adults with autism spectrum disorders. In D. G. Amaral, G. Dawson, & D. Geschwind (Eds.), Autism spectrum disorders (pp. 241–252). New York: Oxford University Press.
Sheldrick, R. C., Neger, E., Shipman, D., & Perrin, E. (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.
Shipman, D. L., Sheldrick, R. 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(2), 85–89.
Skevington, S. M., Lotfy, M., & O’Connell, K. A. (2004). The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial: A report from the WHOQOL Group. Quality of Life Research, 13(2), 299–310.
Sterzing, P. R., Shattuck, P. T., Narendorf, S. C., Wagner, M., & Cooper, B. P. (2012). Bullying involvement and autism spectrum disorders: Prevalence and correlates of bullying involvement among adolescents with an autism spectrum disorder. Archives of Pediatrics and Adolescent Medicine, 166(11), 1058–1064.
WHOQOL Group. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41(10), 1403–1409.
WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558.
This study was supported by grants from the National Institute on Aging (R01 AG08768, Marsha Mailick, PI), the National Institute of Child Health and Human Development (T32 HD07489, Marsha Mailick, PI), and the Autism Speaks (#7724, Marsha Mailick, PI). The present analysis was based on data collected at the UW-Madison Waisman Center site (M. Mailick, PI). We are extremely grateful to the families who participated in this study; without their generous support and commitment, our research would not be possible. We are also grateful for the support we received from the Waisman Center (P30 HD03352, Albee Messing, PI).
All authors contributed extensively to the work presented in this paper.
See Table 5.
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Hong, J., Bishop-Fitzpatrick, L., Smith, L.E. et al. Factors Associated with Subjective Quality of Life of Adults with Autism Spectrum Disorder: Self-Report Versus Maternal Reports. J Autism Dev Disord 46, 1368–1378 (2016). https://doi.org/10.1007/s10803-015-2678-0