'Je dois recharger mes batteries sociales' : points de vue de jeunes adultes autistes sur la Qualité de vie

'Je dois recharger mes batteries sociales' : points de vue de jeunes adultes autistes sur la Qualité de vie

Ajouté le 05/07/2024

Type de contenu

Article de revue du type Recherche scientifique ( ; anglais)

Elisabeth Øverland, Åshild Lappegard Hauge, Stian Orm, Merete Glenne Øie, Erik Winther Skogli, Elizabeth Pellicano, Per Normann Andersen , 'I have to charge my social battery': Perspectives from autistic young adults on Quality of Life, publié dans la revue "Autism", n°28, vol.6, 13 pages , doi:10.1177/13623613241245578

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Résumé/Présentation en français

Dans cette étude, nous avons demandé à un groupe de jeunes adultes autistes de décrire ce qui est important pour leur qualité de vie. Les 14 participants (âgés de 21 à 29 ans) ont été recrutés dans le cadre d'une étude de suivi de 10 ans menée auprès de personnes autistes. Lors des entretiens, nos participants ont décrit l'importance d'entretenir des relations avec la famille, les amis et les animaux de compagnie. Avoir des activités significatives et être capable de s'immerger dans des intérêts particuliers était également considéré comme important pour une bonne qualité de vie. Les intérêts avaient également guidé leur choix quant aux études et aux activités professionnelles. Ils ont également évoqué comment les problèmes de communication avec les professionnels, le harcèlement et la surcharge sensorielle et émotionnelle pouvaient avoir un impact négatif sur la qualité de vie. Les interventions futures devraient se concentrer sur la manière dont les professionnels peuvent aider les personnes autistes à se connecter aux personnes/animaux et à des activités significatives, car les participants ont décrit cela comme important pour avoir une bonne qualité de vie. Ces résultats peuvent être utiles pour améliorer la façon dont les passions et les intérêts peuvent être considérés comme des opportunités de carrière universitaire et professionnelle pour les personnes autistes. Les recherches et interventions futures devraient également examiner les obstacles à la communication entre les personnes autistes et les professionnels, ainsi que la manière dont la compréhension bilatérale peut être améliorée.

Résumé/Présentation en anglais

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.

Pour information:

(1) les références en bleu sont des ressources référencées sur notre site;

(2) les auteur·rices repris dans cette bibliographie dont le nom est en couleur ont publié d'autres ressources référencées sur le site. Cliquer sur le nom permet de voir la listes des ressources publiées et partagées sur le site;

(3) les auteur·rices dont le nom est suivi d'une astérisque ont publiquement divulgué être autistes. [En savoir plus sur cette mention]
Références bibliographiques

  • 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

  • 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

  • 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

  • L. Kenny, C. Hattersley, B. Molins, C. Buckley, C. Povey, E. Pellicano (2016). "Which terms should be used to describe autism? Perspectives from the UK autism community". Autism 20. doi:10.1177/1362361315588200

  • 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

  • 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

  • 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

  • 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

  • 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. Pukki*, J. Bettin, A. Grey Outlaw, J. Hennessy, K. Brook*, M. Dekker, M. Doherty, S. Shaw, J. Bervoets*, S. Rudolph, T. Corneloup, K. Derwent, O. Lee, Y. Garcia Rojas, W. Lawson*, M. Vidal Gutierrez, K. Petek, M. Tsiakkirou, A. Suoninen, J. Minchin, R. Döhle, S. Lipinski, H. Natri*, E. Reardon, G. Villarreal Estrada, O. Platon, N. Chown, A. Satsuki, D. Milton*, N. Walker*, O. Roldan, B. Herrán, C. Limón Cañedo, S. McCowan, M. Johnson, E. Turner, J. Lammers, W. Yoon (2022). "Autistic Perspectives on the Future of Clinical Autism Research". Autism in Adulthood: Challenges and Management 4. doi:10.1089/aut.2022.0017

  • 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


 
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