Added on 05/07/2024
Journal article of the type Scientific research ( ; english)
In this study we have asked a group of autistic young adults to describe what is important for their quality of life. The 14 participants (aged 21-29 years) were recruited from a 10-year follow-up study of autistic people. During interviews, our participants described the importance of having relationships with family, friends and pets. Having meaningful activities and being able to immerse themselves in particular interests was also reported to be important for a good quality of life. Interests had also guided their choice of what to study and what to do for work. They also spoke of how communication problems with professionals, bullying and sensory and emotional overload could have a negative impact on quality of life. Future interventions should focus on how professionals can help autistic people to connect to people/animals and meaningful activities, as the participants described this as important for having a good quality of life. These findings may be helpful in enhancing how passions and interests can be seen as opportunities for both academic and work careers for autistic people. Future research and interventions should also look at the communication barriers between autistic people and professionals, and how two-way understanding can be improved.
For your information:
(1) References in blue are resources listed on our site.
(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.
(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.
-
P. Andersen, S. Orm, I. Fossum, M. Øie, E. Skogli (2023). "Adolescence internalizing problems as a mediator between autism diagnosis in childhood and quality of life in emerging adults with and without autism: a 10-year longitudinal study". BMC Psychiatry 23. doi:10.1186/s12888-023-04635-w
-
K. Anderson, C. Sosnowy, A. Kuo, P. Shattuck (2018). "Transition of Individuals With Autism to Adulthood: A Review of Qualitative Studies". Pediatrics 141. doi:10.1542/peds.2016-4300i
-
J. Arnett (2000). "Emerging adulthood. A theory of development from the late teens through the twenties.". The American psychologist doi:10.1037/0003-066x.55.5.469
-
J. Arnett (2007). "Emerging Adulthood: What Is It, and What Is It Good For?". Child Development Perspectives 1. doi:10.1111/j.1750-8606.2007.00016.x
-
M. Ayres, J. Parr, J. Rodgers, D. Mason, L. Avery, D. Flynn (2018). "A systematic review of quality of life of adults on the autism spectrum". Autism 22. doi:10.1177/1362361317714988
-
A. Backman, E. Zander, L. Roll-Pettersson, S. Vigerland, T. Hirvikoski (2023). "Functioning and quality of life in transition-aged youth on the autism spectrum – associations with autism symptom severity and mental health problems". Research in Autism Spectrum Disorders doi:10.1016/j.rasd.2023.102168
-
A. Baxter, T. Brugha, H. Erskine, R. Scheurer, T. Vos, J. Scott (2014). "The epidemiology and global burden of autism spectrum disorders". Psychological Medicine 45. doi:10.1017/s003329171400172x
-
T. Benevides, S. Shore, K. Palmer, P. Duncan, A. Plank, M. Andresen, R. Caplan*, B. Cook, D. Gassner*, B. Hector*, L. Morgan, L. Nebeker, Y. Purkis, B. Rankowski, K. Wittig, S. Coughlin (2020). "Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project". Autism 24. doi:10.1177/1362361320908410
-
L. Bishop-Fitzpatrick, J. Hong, L. Smith, R. Makuch, J. Greenberg, M. Mailick (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. doi:10.1007/s10803-016-2816-3
-
V. Braun, V. Clarke (2020). "One size fits all? What counts as quality practice in (reflexive) thematic analysis?". Qualitative Research in Psychology 18. doi:10.1080/14780887.2020.1769238
-
R. Buijsman, S. Begeer, A. Scheeren (2022). "'Autistic person' or 'person with autism'? Person-first language preference in Dutch adults with autism and parents". Autism 27. doi:10.1177/13623613221117914
-
S. Bury, R. Jellett, J. Spoor, D. Hedley (2020). "'It Defines Who I Am' or 'It's Something I Have': What Language Do [Autistic] Australian Adults [on the Autism Spectrum] Prefer?". Journal of Autism and Developmental Disorders 53. doi:10.1007/s10803-020-04425-3
-
K. Byström, C. Persson (2015). "The Meaning of Companion Animals for Children and Adolescents with Autism: The Parents' Perspective". Anthrozoös 28. doi:10.1080/08927936.2015.11435401
-
N. Cheak-Zamora, M. Teti, A. Maurer-Batjer (2018). "Capturing Experiences of Youth With ASD via Photo Exploration: Challenges and Resources Becoming an Adult". Journal of Adolescent Research 33. doi:10.1177/0743558416653218
-
S. Cribb, L. Kenny, E. Pellicano (2019). "'I definitely feel more in control of my life': The perspectives of young autistic people and their parents on emerging adulthood". Autism 23. doi:10.1177/1362361319830029
-
C. Crompton, S. Hallett*, D. Ropar, E. Flynn, S. Fletcher‐Watson (2019). "'I never realised everybody felt as happy as I do when I am around autistic people': A thematic analysis of autistic adults' relationships with autistic and neurotypical friends and family". Autism 24. doi:10.1177/1362361320908976
-
R. Cummins (2000). "Objective and Subjective Auality of Life: an Interactive Model". Social Indicators Research 52. doi:10.1023/a:1007027822521
-
R. Elias, S. White (2018). "Autism Goes to College: Understanding the Needs of a Student Population on the Rise". Journal of Autism and Developmental Disorders 48. doi:10.1007/s10803-017-3075-7
-
I. Etikan, S. Abubakar Musa, R. Alkassim (2016). "Comparison of Convenience Sampling and Purposive Sampling". American Journal of Theoretical and Applied Statistics 1(5). doi:10.11648/j.ajtas.20160501.11
-
European Union (2015). "Quality of life: Facts and views". (Source)
-
K. Evers, J. Maljaars, H. Schepens, G. Vanaken, I. Noens (2022). "Conceptualization of quality of life in autistic individuals". Developmental Medicine & Child Neurology 64. doi:10.1111/dmcn.15205
-
R. Grove, R. Hoekstra, M. Wierda, S. Begeer (2018). "Special interests and subjective wellbeing in autistic adults". Autism Research 11. doi:10.1002/aur.1931
-
F. Happé, R. Charlton (2011). "Aging in Autism Spectrum Disorders: A Mini-Review". Gerontology 58. doi:10.1159/000329720
-
Helsedirektoratet (2016). "Gode liv i Norge: Utredning om måling av befolkningens livskvalitet [Good lives in Norway: A study on measuring the population's quality of life.]". (Source)
-
A. Hogan (2019). "Moving Away from the 'Medical Model': The Development and Revision of the World Health Organization's Classification of Disability". Bulletin of the History of Medicine 93. doi:10.1353/bhm.2019.0028
-
L. Graham Holmes, C. Zampella, C. Clements, J. McCleery, B. Maddox, J. Parish-Morris, M. Udhnani, R. Schultz, J. Miller (2020). "A Lifespan Approach to Patient‐Reported Outcomes and Quality of Life for People on the Autism Spectrum". Autism Research 13. doi:10.1002/aur.2275
-
J. Hong, L. Bishop-Fitzpatrick, L. Smith, J. Greenberg, M. Mailick (2015). "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. doi:10.1007/s10803-015-2678-0
-
N. Humphrey, J. Hebron (2015). "Bullying of children and adolescents with autism spectrum conditions: a 'state of the field' review". International Journal of Inclusive Education 19. doi:10.1080/13603116.2014.981602
-
E. Ikeda, E. Hinckson, C. Krägeloh (2014). "Assessment of quality of life in children and youth with autism spectrum disorder: a critical review". Quality of Life Research 23. doi:10.1007/s11136-013-0591-6
-
V. Jaswal, N. Akhtar (2019). "Being versus appearing socially uninterested: Challenging assumptions about social motivation in autism". Behav Brain Sci doi:10.1017/s0140525x18001826
-
A. Knüppel, G. Telléus, H. Jakobsen, M. Lauritsen (2018). "Quality of life in adolescents and adults with autism spectrum disorder: Results from a nationwide Danish survey using self-reports and parental proxy-reports.". Research in developmental disabilities 83. doi:10.1016/j.ridd.2018.09.004
-
G. Lam, S. Sabnis, M. Migueliz Valcarlos, J. Wolgemuth (2021). "A Critical Review of Academic Literature Constructing Well-Being in Autistic Adults.". Autism in adulthood : challenges and management doi:10.1089/aut.2020.0053
-
G. Lam, E. Holden, M. Fitzpatrick, L. Raffaele Mendez, K. Berkman (2020). "'Different but connected': Participatory action research using Photovoice to explore well-being in autistic young adults". Autism 24. doi:10.1177/1362361319898961
-
R. Leung, K. Zakzanis (2014). "Brief Report: Cognitive Flexibility in Autism Spectrum Disorders: A Quantitative Review". Journal of Autism and Developmental Disorders 44. doi:10.1007/s10803-014-2136-4
-
R. Lilley, W. Lawson*, G. Hall*, J. Mahony, H. Clapham*, M. Heyworth*, S. Arnold, J. Trollor, M. Yudell, E. Pellicano (2021). "'A way to be me': Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood". Autism 26. doi:10.1177/13623613211050694
-
M. Lizon, L. Taels, S. Vanheule (2023). "Specific interests as a social boundary and bridge: A qualitative interview study with autistic individuals". Autism 28. doi:10.1177/13623613231193532
-
K. Malterud, V. Siersma, A. Guassora (2016). "Sample Size in Qualitative Interview Studies". Qualitative Health Research 26. doi:10.1177/1049732315617444
-
K. Malterud (2001). "Qualitative research: standards, challenges, and guidelines". The Lancet 358. doi:10.1016/s0140-6736(01)05627-6
-
D. Mason, H. McConachie, D. Garland, A. Petrou, J. Rodgers, J. Parr (2018). "Predictors of quality of life for autistic adults". Autism Research 11. doi:10.1002/aur.1965
-
N. Matthews, K. Christenson, S. Kiefer, C. Smith (2021). "A mixed-methods examination of the gap between intelligence and adaptive functioning in autistic young adults without intellectual disability". Autism 25. doi:10.1177/13623613211018334
-
C. Mazefsky, J. Kao, D. Oswald (2011). "Preliminary evidence suggesting caution in the use of psychiatric self-report measures with adolescents with high-functioning autism spectrum disorders.". Research in autism spectrum disorders doi:10.1016/j.rasd.2010.03.006
-
C. Maïano, C. Normand, M. Salvas, G. Moullec, A. Aimé (2016). "Prevalence of School Bullying Among Youth with Autism Spectrum Disorders: A Systematic Review and Meta‐Analysis". Autism Research 9. doi:10.1002/aur.1568
-
H. McConachie, C. Wilson, D. Mason, D. Garland, J. Parr, A. Rattazzi, J. Rodgers, S. Skevington, M. Uljarević, I. Magiati (2020). "What Is Important in Measuring Quality of Life? Reflections by Autistic Adults in Four Countries.". Autism in adulthood : challenges and management doi:10.1089/aut.2019.0008
-
H. McConachie, D. Mason, J. Parr, D. Garland, C. Wilson, J. Rodgers (2017). "Enhancing the Validity of a Quality of Life Measure for Autistic People". Journal of Autism and Developmental Disorders 48. doi:10.1007/s10803-017-3402-z
-
D. Milton*, T. Sims (2016). "How is a sense of well-being and belonging constructed in the accounts of autistic adults?". Disability & Society 31. doi:10.1080/09687599.2016.1186529
-
B. Oakley, J. Tillmann, J. Ahmad, D. Crawley, A. San José Cáceres, R. Holt, T. Charman, T. Banaschewski, J. Buitelaar, E. Simonoff, D. Murphy, E. Loth (2020). "How do core autism traits and associated symptoms relate to quality of life? Findings from the Longitudinal European Autism Project". Autism 25. doi:10.1177/1362361320959959
-
E. Pellicano, S. Brett, J. den Houting*, M. Heyworth*, I. Magiati, R. Steward*, A. Urbanowicz, M. Stears (2021). "COVID-19, social isolation and the mental health of autistic people and their families: A qualitative study". Autism 26. doi:10.1177/13623613211035936
-
L. Pellicano, S. Bölte, A. Stahmer (2018). "The current illusion of educational inclusion". Autism 22. doi:10.1177/1362361318766166
-
M. Power, W. Kuyken, J. Orley, H. Herman, H. Schofield, B. Murphy, Ž. Metelko, S. Szabo, M. Pibernik-Okanović, N. Quemada, A. Caria, S. Rajkumar, S. Kumar, S. Saxena, K. Chandiramani, M. Amir, D. Bar-On, A. Noji, G. Heck, J. Vries (1998). "The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties.". Social science & medicine doi:10.1016/s0277-9536(98)00009-4
-
H. Rapaport, H. Clapham*, J. Adams*, W. Lawson*, K. Porayska-Pomsta, E. Pellicano (2023). "'In a State of Flow': A Qualitative Examination of Autistic Adults' Phenomenological Experiences of Task Immersion". Autism in Adulthood doi:10.1089/aut.2023.0032
-
S. Robertson (2009). "Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges". Disability Studies Quarterly 30. doi:10.18061/dsq.v30i1.1069
-
R. Schalock (2004). "The concept of quality of life: what we know and do not know.". Journal of intellectual disability research : JIDR doi:10.1111/j.1365-2788.2003.00558.x
-
R. Schalock (2000). "Three Decades of Quality of Life". Focus on Autism and Other Developmental Disabilities 15. doi:10.1177/108835760001500207
-
S. Schwartz, M. Petrova (2019). "Prevention Science in Emerging Adulthood: a Field Coming of Age". Prevention Science 20. doi:10.1007/s11121-019-0975-0
-
M. Scott, F. Sedgewick (2021). "'I have more control over my life': A qualitative exploration of challenges, opportunities, and support needs among autistic university students". Autism & Developmental Language Impairments 6. doi:10.1177/23969415211010419
-
I. Skafle, A. Nordahl-Hansen, R. Øien (2019). "Short Report: Social Perception of High School Students with ASD in Norway". Journal of Autism and Developmental Disorders 50. doi:10.1007/s10803-019-04281-w
-
C. Sosnowy, C. Silverman, P. Shattuck (2018). "Parents' and young adults' perspectives on transition outcomes for young adults with autism". Autism 22. doi:10.1177/1362361317699585
-
A. Taboas, K. Doepke, C. Zimmerman (2022). "Preferences for identity-first versus person-first language in a US sample of autism stakeholders". Autism 27. doi:10.1177/13623613221130845
-
R. Tesfaye, V. Courchesne, P. Mirenda, W. Mitchell, D. Nicholas, I. Singh, L. Zwaigenbaum, M. Elsabbagh (2022). "Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth". Autism 27. doi:10.1177/13623613221132108
-
C. Thompson, S. Bölte, T. Falkmer, S. Girdler (2018). "To be understood: Transitioning to adult life for people with Autism Spectrum Disorder". PLoS ONE 13. doi:10.1371/journal.pone.0194758
-
M. de Vries, H. Geurts (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. doi:10.1007/s10803-015-2438-1
-
R. Wood (2019). "Autism, intense interests and support in school: from wasted efforts to shared understandings". Educational Review 73. doi:10.1080/00131911.2019.1566213
-
E. Øverland, Å. Hauge, S. Orm, E. Pellicano, M. Øie, E. Skogli, P. Andersen (2022). "Exploring life with autism: Quality of Life, daily functioning and compensatory strategies from childhood to emerging adulthood: A qualitative study protocol". Frontiers in Psychiatry 13. doi:10.3389/fpsyt.2022.1058601
This resource has not (yet) been cited on Bluesky.
Summarize/Comment on/Translate this reference?