Abstract
In order to update the status of the research on quality of life (QoL) of adults with ASD, a systematic review was carried out following the preferred reporting items for systematic reviews and meta-Analyses’ (PRISMA) protocol. Eleven articles were selected from different databases. Results show lower levels of QoL in people with ASD than in the general population, informing of the need to adapt the concept of QoL to the reality of ASD and to question the measures used to date to assess this variable. Recent research has been found inconclusive and methodologically weak. Variables such as comorbid psychopathologies, limitations in self-determination, or executive dysfunction were highlighted as factors that negatively affect QoL, and they must be considered and introduced in daily interventions in order to ensure an adequate QoL.
This is a preview of subscription content, access via your institution.
References
*Study included in the review
Ayres, M., Parr, J. R., Rodgers, J., Mason, D., Avery, L., & Flynn, D. (2017). A systematic review of quality of life of adults on the autism spectrum. Autism, 22(7), 774–783. https://doi.org/10.1177/1362361317714988.
Bennett, H. E., Wood, C. L., & Hare, D. J. (2005). Providing care for adults with autistic spectrum disorders in learning disability services: needs-based or diagnosis-driven? Journal of Applied Research in Intellectual Disabilities, 18(1), 57–64. https://doi.org/10.1111/j.1468-3148.2004.00219.x.
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. https://doi.org/10.1177/1362361309346066.
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), 2707–2719.
*Bishop-Fitzpatrick, L., DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2017b). Participation in recreational activities buffers the impact of perceived stress on quality of life in adults with autism spectrum disorder. Autism research: official journal of the International Society for Autism Research, 10(5). https://doi.org/10.1002/aur.1753.
*Bishop-Fitzpatrick, L., Mazefsky, C. A., & Eack, S. M. (2017a). The combined impact of social support and perceived stress on quality of life in adults with autism spectrum disorder and without intellectual disability. Autism, 22(6), 703–711. https://doi.org/10.1177/1362361317703090.
Caballo, C., Crespo, M., Jenaro, C., Verdugo, M. A., & Martínez, J. L. (2005). Factor structure of the Schalock and Keith Quality of Life Questionnaire (QOL-Q): validation on Mexican and Spanish samples. Journal of Intellectual Disability Research, 49(10), 773–776. https://doi.org/10.1111/j.1365-2788.2005.00750.x.
Charlton, A. S., Smith, I. C., Mazefsky, C. A., & White, S. W. (2019). The role of emotion regulation on co-occurring psychopathology in emerging adults with ASD. Journal of Autism and Developmental Disorder. https://doi.org/10.1007/s10803-019-03983-5.
Cornwell, E. Y., & Waite, L. J. (2009). Social disconnectedness, perceived isolation, and health among older adults. Journal of Health and Social Behavior, 50(1), 31–48.10.1177/002214650905000103.
*Dijkhuis, R. R., Ziermans, T. B., Van Rijn, S., Staal, W. G., & Swaab, H. (2016). Self-regulation and quality of life in high-functioning young adults with autism. Autism, 27(1), 896–906. https://doi.org/10.1177/1362361316655525.
Friedman, C. (2019). Quality-of-life outcomes of older adults with severe disabilities. Research and Practice for Persons with Severe Disabilities, 44(4), 237–250. https://doi.org/10.1177/1540796919879227.
Fink, E., Olthof, T., Goossens, F., van der Meijden, S., & Begeer, S. (2018). Bullying-related behaviour in adolescents with autism: Links with autism severity and emotional and behavioural problems. Autism, 22(6), 684–692. https://doi.org/10.1177/1362361316686760.
Ghirardi, L., Petterson, E., Taylor, M. J., Freitag, C. M., Franke, B., Asherson, P., Larsson, H., & Kuja-Halkola, R. (2018). Genetic and environmental contribution to the overlap between ADHD and ASD trait dimensions in young adults: a twin study. Psychological Medicine, 1–9. https://doi.org/10.1017/S003329171800243X.
Green, S. A., & Ben-Sasson, A. (2010). Anxiety disorders and sensory over-responsivity in children with autism spectrum disorders: is there a causal relationship? Journal of Autism and Developmental Disorders, 40(12), 1495–1504. https://doi.org/10.1007/s10803-010-1007-x.
*Hamm, J., & Yun, J. (2019). Influence of physical activity on the health-related quality of life of young adults with and without autism spectrum disorder. Disability and Rehabilitation, 41(7), 763–769. https://doi.org/10.1080/09638288.2017.1408708.
Happé, F., & Charlton, R. A. (2012). Aging in autism spectrum disorders: A mini-review. Gerontology, 58, 70–78. https://doi.org/10.1159/000329720.
Happé, F., & Frith, U. (2020). Annual research review: looking back to look forward–changes in the concept of autism and implications for future research. Journal of Child Psychology and Psychiatry, 61(3), 218–232. https://doi.org/10.1111/jcpp.13176.
Hebron, J., Oldfield, J., & Humphrey, N. (2017). Cumulative risk effects in the bullying of children and young people with autism spectrum conditions. Autism, 21(3), 291–300. https://doi.org/10.1177/1362361316636761.
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. 10.1177/1362361316650090.
Higgins, J. P., & Green, S. (Eds.) (2011). Cochrane Handbook for Systematic Reviews of Iinterventions Version 5.1.0. Cochrane Collaboration.
Hollocks, M. J., Lerh, J. W., Magiati, I., Meiser-Stedman, R., & Brugha, T. S. (2018). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis. Psychological Medicine, 1–14. https://doi.org/10.1017/S0033291718002283.
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. https://doi.org/10.1007/s10803-015-2678-0.
Howlin, P., & Magiati, I. (2017). Autism spectrum disorder: Outcomes in adulthood. Current Opinion in Psychiatry, 30(2), 69–76. https://doi.org/10.1097/YCO.0000000000000308.
Isaac, V., Stewart, R., Artero, S., Ancelin, M. L., & Ritchie, K. (2009). Social activity and improvement in depressive symptoms in older people: a prospective community cohort study. The American Journal of Geriatric Psychiatry, 17(8), 688–696. https://doi.org/10.1097/JGP.0b013e3181a88441.
Kim, S. Y. (2019). The experiences of adults with autism spectrum disorders: Self-determination and quality of life. Research in Autism Spectrum Disorders, 60, 1–15. https://doi.org/10.1016/j.rasd.2018.12.002.
Leader, G., & Mannion, A. (2016). Challenging behaviors. En J. L. Matson (Ed.), Handbook of Assessment and Diagnosis of Autism Spectrum Disorder (pp. 209-232). Springer.
*Lin, L. Y., & Huang, P. C. (2019). Quality of life and its related factors for adults with autism spectrum disorder. Disability and Rehabilitation, 41(8), 896–903. https://doi.org/10.1080/09638288.2017.1414887.
Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child & Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.01.
Lorenc, T., Rodgers, M., Marshall, D., Melton, H., Rees, R., Wright, K., & Sowden, A. (2017). Support for adults with autism spectrum disorder without intellectual impairment: Systematic review. Autism, 22(6), 654–668. https://doi.org/10.1177/1362361317698939.
Lugo-Marín, J., Magán-Maganto, M., Rivero-Santana, A., Cuellar-Pompa, L., Alviani, M., Jenaro-Rio, C., Díez, E., & Canal-Bedia, R. (2019). Prevalence of psychiatric disorders in adults with autism spectrum disorder: A systematic review and meta-analysis. Research in Autism Spectrum Disorders, 59, 22–33. https://doi.org/10.1016/j.rasd.2018.12.004.
*Mason, D., Mackintosh, J., McConachie, H., Rodgers, J., Finch, T., & Parr, J. R. (2019). Quality of life for older autistic people: The impact of mental health difficulties. Research in Autism Spectrum Disorders, 63, 13–22. https://doi.org/10.1016/j.rasd.2019.02.007.
*Mason, D., McConachie, H., Garland, D., Petrou, A., Rodgers, J., & Parr, J. R. (2018). Predictors of quality of life for autistic adults. Autism Research, 11(8), 1138–1147. https://doi.org/10.1002/aur.1965.
McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., & Rodgers, J. (2018). Enhancing the validity of a quality of life measure for autistic people. Journal of Autism and Developmental Disorders, 48, 1596–1611. https://doi.org/10.1007/s10803-017-3402-z.
Menear, K. S., & Neumeier, W. H. (2015). Promoting physical activity for students with autism spectrum disorder: Barriers, benefits, and strategies for success. Journal of Physical Education, Recreation & Dance, 86(3). https://doi.org/10.1080/07303084.2014.998395.
*Moss, P., Mandy, W., & Howlin, P. (2017). Child and adult factors related to quality of life in adults with autism. Journal of Autism and Developmental Disorders, 47(6), 1830–1837. https://doi.org/10.1007/s10803-017-3105-5.
Neil, L., Olsson, N. C., & Pellicano, E. (2016). The relationship between intolerance of uncertainty, sensory sensitivities, and anxiety in autistic and typically developing children. Journal of Autism and Developmental Disorders, 46(6), 1962–1973. https://doi.org/10.1007/s10803-016-2721-9.
Reinders, N. J., Branco, A., Wright, K., Fletcher, P. C., & Bryden, P. J. (2019). Scoping review: Physical activity and social functioning in young people with autism spectrum disorder. Frontiers in Psychology, 10(120). https://doi.org/10.3389/fpsyg.2019.00120.
Rosen, T. E., Mazefsky, C. A., Vasa, R. A., & Lerner, M. D. (2018). Co-occurring psychiatric conditions in autism spectrum disorder. International Review of Psychiatry, 30(1), 40–61. https://doi.org/10.1080/09540261.2018.1450229.
Sáez-Suanes, G. P., Álvarez-Couto, M., &. d’Orey Roquete, M. (2020). Depressive symptomatology in adults with autism spectrum disorder and intellectual disability: correlates and predictors. International Journal of Developmental Disabilities. https://doi.org/10.1080/20473869.2020.1721161.
Salerno, L., & Sandra Kooij, J. J. (2019). Adult attention deficit hyperactivity disorder (ADHD) in ASD. In R. Keller (Ed.), Psychopathology in Adolescents and Adults with Autism Spectrum Disorders (pp. 175-194). Springer.
Schalock, R. L., & Keith, K. D. (1993). Quality of life questionnaire manual. IDS Publishing Corporation.
Shiovitz-Ezra, S., & Ayalon, L. (2010). Situational versus chronic loneliness as risk factors for all-cause mortality. International Psychogeriatrics, 22(3), 455–462. https://doi.org/10.1017/S1041610209991426.
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, 299–310. https://doi.org/10.1023/B:QURE.0000018486.91360.00.
Sowa, M., & Meulenbroek, R. (2012). Effects of physical exercise on autism spectrum disorders: a meta-analysis. Research in Autism Spectrum Disorders, 6(1), 46–57. https://doi.org/10.1016/j.rasd.2011.09.001.
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. https://doi.org/10.1111/j.1365-2214.2012.01377.x.
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(10), 1171–1178. https://doi.org/10.1007/s10803-010-0975-1.
van Heijst, B., & Geurts, H. M. (2014). Quality of life in autism across the lifespan: A meta-analysis. Autism. https://doi.org/10.1177/1362361313517053.
*Vincent, A., Da Fonseca, D., Baumstarck, K., Charvin, I., Alcaraz-Mor, R., & Lehucher-Michel, M. P. (2019). The quality of life and the future of young adults with Asperger syndrome. Disability and Rehabilitation, 1–8. https://doi.org/10.1080/09638288.2018.1544297.
Wallace, G. L., Kenworthy, L., Pugliese, C. E., Popal, H. S., White, E. I., Brodsky, E., & Martin, A. (2016). Real-world executive functions in adults with autism spectrum disorder: Profiles of impairment and associations with adaptive functioning and co-morbid anxiety and depression. Journal of Autism and Developmental Disorders, 1–13. https://doi.org/10.1007/s10803-015-2655-7.
*White, K., Flanagan, T. D., & Nadig, A. (2018). Examining the relationship between self-determination and quality of life in young adults with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 30(6), 735–754. https://doi.org/10.1007/s10882-018-9616-y.
WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28, 551–558. https://doi.org/10.1017/s0033291798006667.
Wise, E. A., Smith, M. D., & Rabins, P. V. (2017). Aging and autism spectrum disorder: A naturalistic, longitudinal study of the comorbidities and behavioral and neuropsychiatric symptoms in adults with ASD. Journal of Autism and Developmental Disorders, 47(6), 1708–1715. https://doi.org/10.1007/s10803-017-3095-3.
World Health Organization quality of life assessment gGroup (WHOQOL). (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41(10), 1403–1409. https://doi.org/10.1016/0277-9536(95)00112-K.
Zimmerman, D., Ownsworth, T., O’Donovan, A., Roberts, J., & Gullo, M. J. (2016). High-functioning autism spectrum disorder in adulthood: A systematic review of factors related to psychosocial outcomes. Journal of Intellectual & Developmental Disability, 1–18. https://doi.org/10.3109/13668250.2016.1262010.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Research involving human participants and/or animals
The ethics commission of the Psychopathology Teaching Unit of the Complutense University of Madrid, Spain, reviewed and approved this study.
Informed consent
Not applicable to this work.
Conflict of Interest
The authors declare no competing interests.
Additional information
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Sáez-Suanes, G.P., Álvarez-Couto, M. Factors Associated with Quality of Life in Adults with Autism Spectrum Disorder: A Systematic Review. Rev J Autism Dev Disord 9, 307–319 (2022). https://doi.org/10.1007/s40489-021-00254-x
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s40489-021-00254-x