Factors associated with subjective quality of life of adults with autism spectrum disorder: self-report versus maternal reports
Open accessAbstract
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.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Experiences of non-accepting environments in earlier education can have long-lasting impacts and contribute to a negative sense of self, affected wellbeing and reduced quality of life for older students and adults.
“Experiences of non-accepting environments in earlier education can have long-lasting impacts, and can contribute to a negative sense of self, affected wellbeing and reduced quality of life for older students and adults (Hong et al., 2016).”
From Compassionate pedagogy for neurodiversity in higher education: A conceptual analysis (2023) · cites this paper as Hong et al., 2016
The Discussion (page unavailable) links frequent bullying in childhood or adolescence with poorer subjective quality of life in adults with autism and calls for more accepting school environments. The Results (page unavailable) also associate bullying with lower psychological-health scores. The paper does not establish that non-accepting educational environments cause these outcomes, or report a negative sense of self or outcomes for older students. (LLM, conf=0.87)
Experimental — accuracy not yet measured
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Depression and quality of life in older persons: A review
Sivertsen, H., Bjørkløf, G. H., Engedal, K., Selbæk, G., & Helvik, A.-S. (2015) · Dementia and Geriatric Cognitive Disorders · doi:10.1159/000437299 · Cited by 14,152 · see citing works
Self-rated health and mortality: a review of twenty-seven community studies.
Idler, E. L., & Benyamini, Y. (1997) · Journal of Health and Social Behavior · doi:10.2307/2955359 · Cited by 8,598 · see citing works
A very brief measure of the Big-Five personality domains
Gosling, S. D., Rentfrow, P. J., & Swann, W. B. (2003) · Journal of Research in Personality · doi:10.1016/s0092-6566(03)00046-1 · Cited by 8,307 · see citing works
Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment
THE WHOQOL GROUP (1998) · Psychological Medicine · doi:10.1017/s0033291798006667 · Cited by 7,933 · see citing works
Constantino, J. N. (2013) · Encyclopedia of Autism Spectrum Disorders · doi:10.1007/978-1-4419-1698-3_296 · Cited by 908 · see citing works
Renty, J. O., & Roeyers, H. (2006) · Autism · doi:10.1177/1362361306066604 · Cited by 302 · see citing works
Sterzing, P. R., Shattuck, P. T., Narendorf, S. C., Wagner, M., & Cooper, B. P. (2012) · Archives of Pediatrics & Adolescent Medicine · doi:10.1001/archpediatrics.2012.790 · Cited by 254 · see citing works
Maenner, M. J., Smith, L. E., Hong, J., Makuch, R., Greenberg, J. S., & Mailick, M. R. (2013) · Disability and Health Journal · doi:10.1016/j.dhjo.2012.08.005 · Cited by 198 · see citing works
Self-citationChiang, H.-M., & Wineman, I. (2014) · Research in Autism Spectrum Disorders · doi:10.1016/j.rasd.2014.05.003 · Cited by 150 · see citing works
Flagged first, then by citations
Research works printed but not linked: 23
- 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 CA Minshew NJ Eack SM 2015 The relationship between stress and social functioning in adults with autism spectrum disorder and without intellectual disability Autism Research 8 2 164 173 25524571 PMC4412754
- Cappadocia MC Weiss JA Pepler D 2012 Bullying experiences among children and youth with autism spectrum disorders Journal of Autism and Developmental Disorders 42 2 266 277 21499672
- Cohen S Kamarck T Mermelstein R 1983 A global measure of perceived stress Journal of Health and Social Behavior 24 4 385 396 6668417
- Danckaerts M Sonuga-Barke ES Banaschewski T Buitelaar J Döpfner M Hollis C 2010 The quality of life of children with attention deficit/hyperactivity disorder: A systematic review European Child & Adolescent Psychiatry 19 2 83 105 19633992 PMC3128746
- 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 25835211 PMC4553152
- Gerber F Baud M Giroud M Carminati GG 2008 Quality of life of adults with pervasive developmental disorders and intellectual disabilities Journal of Autism and Developmental Disorders 38 9 1654 1665 18266098
- Gerber F Bessero S Robbiani B Courvoisier DS Baud MA Traoré MC 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 21806693
- 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 25073750
- Idler E Benjamini Y 1997 Fifteen years of self-assessed health Journal of Health and Social Behavior 38 1 21 37 9097506
- 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 24310317
- 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 16908482
- Kamp-Becker I Schröder J Remschmidt H Bachmann CJ 2010 Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder GMS Psycho-Social-Medicine 7 1 10 PMC2940215 20930927
- Klassen AF 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 16784495
- Kuhlthau K Orlich F Hall TA Sikora D Kovacs EA Delahaye J 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 20033762
- 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 7814313
- Schalock RL 2004 The concept of quality of life: What we know and do not know Journal of Intellectual Disability Research 48 3 203 216 15025663
- Schroeder JH Cappadocia MC Bebko JM Pepler DJ Weiss JA 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 24464616
- Seltzer MM Greenberg JS Taylor JL Smith LE Orsmond GE Esbensen A 2011 Adolescents and adults with autism spectrum disorders Amaral DG Dawson G Geschwind D Autism Spectrum Disorders 241 252 New York Oxford University Press
- Sheldrick RC 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 21505880
- Shipman DL Sheldrick RC Perrin EC 2011 Quality of life in adolescents with autism spectrum disorders: Reliability and validity of self-reports Journal of Developmental & Behavioral Pediatrics 32 2 85 89 21187785
- Skevington SM Lotfy M O’Connell KA 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 15085902
- 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 8560308
Cited by
Sorted by citations
Predictors of quality of life for autistic adults
Mason, D., McConachie, H., Garland, D., Petrou, A., Rodgers, J., & Parr, J. R. (2018) · Autism Research · doi:10.1002/aur.1965 · Cited by 327 · see citing works
Enhancing the Validity of a Quality of Life Measure for Autistic People
McConachie, H., Mason, D., Parr, J. R., Garland, D., Wilson, C., & Rodgers, J. (2018) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-017-3402-z · Cited by 245 · see citing works
A systematic review of quality of life of adults on the autism spectrum
Ayres, M., Parr, J. R., Rodgers, J., Mason, D., Avery, L., & Flynn, D. (2018) · Autism · doi:10.1177/1362361317714988 · Cited by 230 · see citing works
Compassionate pedagogy for neurodiversity in higher education: A conceptual analysis
Hamilton, L. G., & Petty, S. (2023) · Frontiers in Psychology · doi:10.3389/fpsyg.2023.1093290 · Cited by 185 · see citing works
“Experiences of non-accepting environments in earlier education can have long-lasting impacts, and can contribute to a negative sense of self, affected wellbeing and reduced quality of life for older students and adults (Hong et al., 2016).”
BackgroundBishop-Fitzpatrick, L., Mazefsky, C. A., & Eack, S. M. (2018) · Autism · doi:10.1177/1362361317703090 · Cited by 142 · see citing works
Lawson, L. P., Richdale, A. L., Haschek, A., Flower, R. L., Vartuli, J., Arnold, S. R., & Trollor, J. N. (2020) · Autism · doi:10.1177/1362361320908107 · Cited by 138 · see citing works
Oakley, B. F., Tillmann, J., Ahmad, J., Crawley, D., San José Cáceres, A., Holt, R., Charman, T., Banaschewski, T., Buitelaar, J., Simonoff, E., et al. (2021) · Autism · doi:10.1177/1362361320959959 · Cited by 133 · see citing works
“, 2017), psychological health (e.g. positive/negative affect, selfesteem, cognition; Hong et al., 2016) and – for autistic young people – school functioning (Kuhlthau et al.”
BackgroundMethodInfluentialChild and Adult Factors Related to Quality of Life in Adults with Autism
Moss, P., Mandy, W., & Howlin, P. (2017) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-017-3105-5 · Cited by 119 · see citing works
Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum
Kapp, S. K. (2018) · Pediatrics · doi:10.1542/peds.2016-4300n · Cited by 108 · see citing works
Quality of life for older autistic people: The impact of mental health difficulties
Mason, D., Mackintosh, J., McConachie, H., Rodgers, J., Finch, T., & Parr, J. R. (2019) · Research in Autism Spectrum Disorders · doi:10.1016/j.rasd.2019.02.007 · Cited by 89 · see citing works
Knüppel, A., Telléus, G. K., Jakobsen, H., & Lauritsen, M. B. (2018) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2018.09.004 · Cited by 71 · see citing works
Lifetime and perceived stress, social support, loneliness, and health in autistic adults.
Moseley, R. L., Turner-Cobb, J. M., Spahr, C. M., Shields, G. S., & Slavich, G. M. (2021) · Health Psychology · doi:10.1037/hea0001108 · Cited by 71 · see citing works
The role of emotion regulation on co-occurring psychopathology in emerging adults with ASD
Charlton, A. S., Smith, I. C., Mazefsky, C. A., & White, S. W. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-019-03983-5 · Cited by 47 · see citing works
- Authors
- Hong, J., Bishop-Fitzpatrick, L., Smith, L. E., Greenberg, J. S., & Mailick, M. R.
- Affiliations
- University of Wisconsin–Madison (US)
- Corresponding author
- Hong, Jinkuk
- ORCID
- Hong, Jinkuk
- Venue
- Journal of Autism and Developmental Disorders
- Published
- 2015-12-26
- Volume
- 46
- Issue
- 4
- Pages
- 1368-1378
- ISSN
- 0162-3257 (ISSN-L)
- 1573-3432
- PMC
- PMC4788526
- OpenAlex
- W2203061867
- Cited by
- 178
- References
- 9
- Citations by year
- 2026: 6 · 2025: 12 · 2024: 27 · 2023: 18 · 2022: 17 · 2021: 40 · 2020: 20 · 2019: 13 · 2018: 11 · 2017: 13 · 2016: 1
- FWCI
- 5.01
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Autism and Developmental Disorders (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Institute on Aging (R01 AG08768)
- National Institute of Child Health and Human Development (T32 HD07489)
- Autism Speaks (7724)
- Waisman Center (P30 HD03352)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Keywords
- autism spectrum disorder, subjective quality of life, autistic adults, self-report, maternal report, proxy reports, WHOQOL-BREF, perceived stress, bullying, independence in daily activities, physical health
- MeSH terms
- Autism Spectrum Disorder, Adult, Female, Humans, Male, Middle Aged, Mothers, Quality of Life, Self Report
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
