Résumés
Résumé
Contexte. Les autistes ont été considérés vulnérables aux effets des multiples changements qu’a entraînés la pandémie de la COVID-19 sur le plan des activités et des habitudes de vie. La présente étude visait à comprendre l’expérience de ces changements chez des adultes autistes québécois pouvant porter un regard introspectif sur leur vécu de la crise sanitaire. Méthode. Un questionnaire en ligne (environ 30 minutes) a été rempli par 105 adultes autistes québécois. Des analyses statistiques descriptives ont été menées. Résultats. Une fois le choc initial surmonté, les participants ont bien vécu le contexte de pandémie. Des transformations importantes ont été rapportées relativement à leur contexte environnemental, leurs activités, rôles et routines. Malgré ces changements, la satisfaction de vie des participants fut peu affectée et leurs relations interpersonnelles se sont même améliorées. Les mesures sanitaires visant à limiter la propagation de la COVID-19 se sont aussi répercutées sur l’importance et le sens accordés aux activités. Discussion/conclusion. Les résultats suggèrent que les participants ont su s’adapter au nouveau contexte et même en tirer profit. L’(in)adéquation des contextes dans lesquels s’inscrivent les activités et les habitudes de vie des adultes autistes contribue aux défis rencontrés, se répercutant donc sur leur satisfaction de vie.
Mots-clés :
- autisme,
- COVID-19,
- qualité de vie,
- représentation sociale,
- habitudes de vie,
- transition occupationnelle
Abstract
Context. Autistic adults have been considered vulnerable to the effects of multiple changes that the COVID-19 pandemic has led in activity and lifestyle. The current study aimed to understand the experience of these changes as reported by Quebec autistic adults capable of looking introspectively at their lived experience of the sanitary crisis. Method. An online questionnaire (about 30 minutes) was completed by 105 Quebec autistic adults. Descriptive statistical analyses were conducted. Results. Once they overcame their initial shock, participants have coped relatively well with the pandemic context. Significant transformations were reported in their environmental context, as well as their activities, roles and routines. Despite these changes, participants’ life satisfaction was little affected, and their interpersonal relationships even improved. The sanitary measures aiming at limiting the COVID-19’s propagation have also led to changes in the importance and meaning given to activities. Discussion/Conclusion. Results suggest that participants were able to adapt and even benefit from the new context. The good/poor fit of the contexts in which autistic adults’ lifestyle habits and activities are embedded contribute to the challenges they face and ultimately to their life satisfaction.
Keywords:
- autism,
- COVID-19,
- lifestyle habits,
- occupational transition,
- quality of life,
- social representation
Parties annexes
Bibliographie
- Alhuzimi, T. (2021). Stress and emotional wellbeing of parents due to change in routine for children with Autism Spectrum Disorder (ASD) at home during COVID-19 pandemic in Saudi Arabia. Research in Developmental Disabilities, 108, 103822.10.1016/j.ridd.2020.103822
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorder (5e éd.). American Psychiatric Publishing.
- Andrew, F. M. & Withey, S. B. (1976). Social indicators of well-being: America’s perception of life quality. Plenum.
- Asperger au féminin - Québec. Facebook [Facebook page] (31 mars 2020). http://facebook.com/groups/aspergersfemininqc/post_id=1397355090449888.
- Aspie Québec. (28 mai 2020). http://facebook.com/groups/AspieQuebec/?post_id=10163540923960386.
- Attwood, T. (2018). Le syndrome d’Asperger - Guide complet. DeBoeck Superieur.
- Bargiela, S., Steward, R., & Mandy, W. (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281‑3294. 10.1007/s10803-016-2872-8
- Baric, V. B., Hemmingsson, H., Hellberg, K., & Kjellberg, A. (2017). The Occupational Transition Process to Upper Secondary School, Further Education and/or Work in Sweden: As Described by Young Adults with Asperger Syndrome and Attention Deficit Hyperactivity Disorder. Journal of Autism and Developmental Disorders, 47(3), 667‑679. 10.1007/s10803-016-2986-z
- Barneveld, P. S., Swaab, H., Fagel, S., van Engeland, H., & de Sonneville, L. M. J. (2014). Quality of life: a case-controlled long-term follow-up study, comparing young high-functioning adults with autism spectrum disorders with adults with other psychiatric disorders diagnosed in childhood. Comprehensive Psychiatry, 55(2), 302‑310. 10.1016/j.comppsych.2013.08.001
- Bellomo, T. R., Prasad, S., Munzer, T., & Laventhal, N. (2020). The impact of the COVID-19 pandemic on children with autism spectrum disorders. Journal of Pediatric Rehabilitation Medicine, (Preprint), 1-6.
- 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: The International Journal of Research and Practice, 15(1), 7‑20. 10.1177/1362361309346066
- Birkholtz, M. & Blair, S. E. E. (1999). ‘Coming out’ and its impact on women’s occupational behaviour ‐ a discussion paper. Journal of Occupational Science, 6(2), 68‑74. 10.1080/14427591.1999.968 6453
- Bishop-Fitzpatrick, L., Mazefsky, C. A., & Eack, S. M. (2018). The combined impact of social support and perceived stress on quality of life in adults with autism spectrum disorder and without intellectual disability. Autism: The International Journal of Research and Practice, 22(6), 703‑711. 10.1177/136 2361317703090
- Bishop-Fitzpatrick, L., Smith DaWalt, L., Greenberg, J. S., & Mailick, M. R. (2017). 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), 973‑982. 10.1002/aur.1753
- Blair, S. E. E. (2000). The Centrality of Occupation during Life Transitions. British Journal of Occupational Therapy, 63(5), 231‑237. 10.1177/030802260006300508
- Blais, M. R., Vallerand, R. J., Pelletier, L. G., & Brière, N. M. (1989). L'échelle de satisfaction de vie : Validation canadienne-française du "Satisfaction with Life Scale.". Canadian Journal of Behavioural Science/Revue canadienne des sciences du comportement, 21(2), 210.
- Botha, M., Hanlon, J., & Williams, G. L. (2021). Does language matter? Identity-first versus person-first language use in autism research: A response to Vivanti. Journal of Autism and Developmental Disorders, 1-9.
- Bottema-Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021). Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood, 3(1), 18-29.
- Boyd, K., Woodbury-Smith, M., & Szatmari, P. (2011). Managing anxiety and depressive symptoms in adults with autism-spectrum disorders. Journal of Psychiatry & Neuroscience: JPN, 36(4), E35‑E36. 10.1503/jpn.110040
- Brown, T. (2021), The response to COVID‐19: Occupational resilience and the resilience of daily occupations in action. Aust Occup Ther J, 68: 103-105. https://doi.org/10.1111/1440-1630.12721
- Bury, S. M., Jellett, R., Spoor, J. R., & Hedley, D. (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, 1-11.
- Cassidy, S. A., Nicolaidis, C., Davies, B., Rosa, S. D. R., Eisenman, D., Onaiwu, M. G., Kapp, S. K., Kripke, C. C., Rodgers, J., & Waisman, T. (2020). An Expert Discussion on Autism in the COVID-19 Pandemic. Autism in Adulthood, 2(2), 106‑117. 10.1089/aut.2020.29013.sjc
- Cath, D. C., Ran, N., Smit, J. H., van Balkom, A. J. L. M., & Comijs, H. C. (2008). Symptom overlap between autism spectrum disorder, generalized social anxiety disorder and obsessive-compulsive disorder in adults: a preliminary case-controlled study. Psychopathology, 41(2), 101‑110. 10.1159/000111555
- 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. 10.1016/j.rasd.2014.05.003
- Christiansen, C. & Townsend, E. A. (2010). Introduction to Occupation: The Art of Science and Living (2e éd.). Pearson Education.
- Colizzi, M., Sironi, E., Antonini, F., Ciceri, M. L., Bovo, C., & Zoccante, L. (2020). Psychosocial and Behavioral Impact of COVID-19 in Autism Spectrum Disorder: An Online Parent Survey. Brain Sciences, 10(6). 10.3390/brainsci10060341
- Cordeau, M.-J., Boucher, J., Ducharme, U., Lévesque, D., Brochu, M., & McIntyre, J. (2015). TSA et neurotypique - Mieux se comprendre (Agence de la santé et des services sociaux de la Montérégie). https://www.autisme.qc.ca/assets/files/07-boite-outils/Communication/Guide_TSA-2015.pdf
- Cottle, K. (2018). Co-occurring anxiety in adults with autism spectrum disorder : Use of diagnostic codes to measure prevalence and associations between anxiety and intellectual ability, adaptive behavior, and employment (2018-26093-054) [ProQuest Information & Learning]. Psych. http://ezproxy.usherbrooke.ca/login?url=https://search.ebscohost.com/login.aspx?direct=true&db=psyh&AN=2018-26093-054&site=ehost-live
- Crider, C., Calder, C. R., Bunting, K. L., & Forwell, S. (2015). An Integrative Review of Occupational Science and Theoretical Literature Exploring Transition. Journal of Occupational Science, 22(3), 304‑319. 10.1080/14427591.2014.922913
- Davis, N. M. (2009). Autism and transition: A nonlinear dynamics systems perspective. Journal of Occupational Therapy, Schools, & Early Intervention, 2(3-4), 221-237.
- degli Espinosa, F., Metko, A., Raimondi, M., Impenna, M., & Scognamiglio, E. (2020). A Model of Support for Families of Children With Autism Living in the COVID-19 Lockdown: Lessons From Italy. Behavior Analysis in Practice, 1‑9. 10.1007/s40617-020-00438-7
- 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. 10.1007/s10803-015-2438-1
- Dijkhuis, R. R., Ziermans, T. B., Van Rijn, S., Staal, W. G., & Swaab, H. (2017). Self-regulation and quality of life in high-functioning young adults with autism. Autism: The International Journal of Research and Practice, 21(7), 896‑906. 10.1177/1362361316655525
- Garcia, J. M., Lawrence, S., Brazendale, K., Leahy, N., & Fukuda, D. (2020). Brief report: The impact of the COVID-19 pandemic on health behaviors in adolescents with Autism Spectrum Disorder. Disability and Health Journal, 101021. 10.1016/j.dhjo.2020.101021
- Gernsbacher, M. A. (2017). Editorial Perspective: The use of person-first language in scholarly writing may accentuate stigma. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 58(7), 859‑861. 10.1111/jcpp.12706
- Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., & Schwartzman, B. (2007) Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts. Front Psychol. 28(8),438. doi: 10.3389/ fpsyg.2017.00438. PMID: 28400742; PMCID: PMC5368186.
- Green, V. A., Sigafoos, J., O’Reilly, M., Pituch, K. A., Didden, R., Lancioni, G. E., & Singh, N. N. (2007). Behavioral flexibility in individuals with autism: Theory, assessment, and intervention. Autism research advances, 63-77.
- Guerrero, L., & Ouellette, A. (2013). Le manifeste Aut’Créatifs. https://autcreatifs.com/a-propos-de-nous/
- Hammell, K. W. (2020). Engagement in living: critical perspectives on occupation, rights, and wellbeing. Canadian Association of Occupational Therapists.
- Harris, P. A., Taylor, R., Minor, B. L., Elliott, V., Fernandez, M., O’Neal, L., McLeod, L., Delacqua, G., Delacqua, F., Kirby, J., Duda, S. N., & REDCap Consortium. (2019). The REDCap consortium: Building an international community of software platform partners. Journal of Biomedical Informatics, 95, 103208. 10.1016/j.jbi.2019.103208
- Hatfield, M., Murray, N., Ciccarelli, M., Falkmer, T., & Falkmer, M. (2017). Pilot of the BOOST‐A™: An online transition planning program for adolescents with autism. Australian Occupational Therapy Journal, 64(6), 448-456.
- Hendrickx, S. (2015). Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age. Jessica Kingsley Publishers.
- Henninger, N. A. & Taylor, J. L. (2012). Outcomes in adults with autism spectrum disorders: a historical perspective. Autism: The International Journal of Research and Practice, 17(1), 103‑116. 10.1177/1362361312441266
- Hollocks, M. J., Lerh, J. W., Magiati, I., Meiser-Stedman, R., & Brugha, T. S. (2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis. Psychological Medicine, 49(4), 559‑572. 10.1017/S0033291718002283
- Hong, J., Bishop-Fitzpatrick, L., Smith, L., Greenberg, J. S., & Mailick, M. R. (2016). Factors Associated with Subjective Quality of Life of Adults with Autism Spectrum Disorder: Self-Report vs. Maternal Reports. Journal of autism and developmental disorders, 46(4), 1368‑1378. 10.1007/s10803-015-2678-0
- Howes, O. D., Rogdaki, M., Findon, J. L., Wichers, R. H., Charman, T., King, B. H., Loth, E., McAlonan, G. M., McCracken, J. T., Parr, J. R., Povey, C., Santosh, P., Wallace, S., Simonoff, E., & Murphy, D. G. (2018). Autism spectrum disorder: Consensus guidelines on assessment, treatment and research from the British Association for Psychopharmacology. Journal of Psychopharmacology (Oxford, England), 32(1), 3‑29. 10.1177/0269881117741766
- Hua, J. & Shaw, R. (2020). Corona Virus (COVID-19) “Infodemic” and Emerging Issues through a Data Lens: The Case of China. International Journal of Environmental Research and Public Health, 17(7), 2309. 10.3390/ijerph17072309
- Jonsson, H., Josephsson, S., & Kielhofner, G. (2001). Narratives and experience in an occupational transition: a longitudinal study of the retirement process. The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association, 55(4), 424‑432. 10.5014/ajot.55.4.424
- Jonsson, Hans. (2011). The first steps into the third age: the retirement process from a Swedish perspective. Occupational Therapy International, 18(1), 32‑38. 10.1002/oti.311
- Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental psychology, 49(1), 59.
- Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism: The International Journal of Research and Practice, 20(4), 442‑462. 10.1177/1362361315588200
- Krause, J. S. (1991). Survival following spinal cord injury: A fifteen-year prospective study. Archives of Physical Medicine and Rehabilitation, 78,651-657.
- Krause, J. S., & Kjorsvig, 1992, J. M. (1992). Mortality after spinal cord injury: A four-year prospective study. Archives of Physical Medicine and Rehabilitation,73, 558-563.
- Lee, S. A. (2020). Coronavirus Anxiety Scale: A brief mental health screener for COVID-19 related anxiety. Death Studies, 44(7), 393‑401. 10.1080/07 481187.2020.1748481
- Leedham, A., Thompson, A. R., Smith, R., & Freeth, M. (2020). « I was exhausted trying to figure it out »: The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism: The International Journal of Research and Practice, 24(1), 135‑146. 10.1177/1362361319853442
- Manning, J., Billian, J., Matson, J., Allen, C., & Soares, N. (2020). Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis. Journal of Autism and Developmental Disorders. 10.1007/s10803-020-04760-5
- 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. 10.1002/aur.1965
- McNulty, M. C., Crowe, T. K., Kroening, C., VanLeit, B., & Good, R. (2009). Time Use of Women with Children Living in an Emergency Homeless Shelter for Survivors of Domestic Violence. OTJR: Occupation, Participation and Health, 29(4), 183‑190. 10.3928/15394492-20090914-06
- Morley, M. (2006). Moving from Student to New Practitioner: The Transitional Experience. British Journal of Occupational Therapy, 69(5), 231‑233. 10.1177/030802260606900506
- Mutluer, T., Doenyas, C., & Aslan Genc, H. (2020). Behavioral Implications of the Covid-19 Process for Autism Spectrum Disorder, and Individuals’ Comprehension of and Reactions to the Pandemic Conditions. Frontiers in Psychiatry, 11. 10.3389/fpsyt.2020.561882
- Narzisi, A. (2020). Handle the Autism Spectrum Condition During Coronavirus (COVID-19) Stay At Home period: Ten Tips for Helping Parents and Caregivers of Young Children. Brain Sciences, 10(4). 10.3390/brainsci10040207
- Nicolaidis, C. (2012). What can physicians learn from the neurodiversity movement?. AMA Journal of Ethics, 14(6), 503-510.
- Park, S. H., Song, Y. J. C., Demetriou, E. A., Pepper, K. L., Norton, A., Thomas, E. E., Hickie, I. B., Hermens, D. F., Glozier, N., & Guastella, A. J. (2019). Disability, functioning, and quality of life among treatment-seeking young autistic adults and its relation to depression, anxiety, and stress. Autism, 23(7), 1675‑1686. 10.1177/1362361318823925
- Pavot, W. & Diener, E. (2009). Review of the satisfaction with life scale. In Assessing well-being (pp. 101-117). Springer, Dordrecht.ISO 690
- Pisula, E., Danielewicz, D., Kawa, R., & Pisula, W. (2015). Autism spectrum quotient, coping with stress and quality of life in a non-clinical sample – an exploratory report. Health and Quality of Life Outcomes, 13(1), 173. 10.1186/s12955-015-0370-x
- Postorino, V., Kerns, C. M., Vivanti, G., Bradshaw, J., Siracusano, M., & Mazzone, L. (2017). Anxiety Disorders and Obsessive-Compulsive Disorder in Individuals with Autism Spectrum Disorder. Current Psychiatry Reports, 19(12), 92. 10.1007/s 11920-017-0846-y
- Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout. Autism in Adulthood, 2(2), 132‑143. 10.1089/aut.2019.0079
- REDCap & Vanderbilt. (2020). Research Electronic Data Capture. About – REDCap. https://projectredcap.org/about/
- 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: The International Journal of Research and Practice, 10(5), 511‑524. 10.1177/1362361306066604
- Shaw, L. & Rudman, D. L. (2009). Using occupational science to study occupational transitions in the realm of work: from micro to macro levels. Work (Reading, Mass.), 32(4), 361‑364. 10.3233/WOR-2009-0848
- Shin, D. C. & Johnson, D. M. (1978). Avowed happiness as an overall assessment of the quality of life. Social Indicators Research, 5(1), 475‑492. 10.1007/BF00352944
- Simone, R. (2010). Aspergirls: Empowering Females with Asperger Syndrome. Jessica Kingsley Publishers.
- Tarbox, C., Silverman, E. A., Chastain, A. N., Little, A., Bermudez, T. L., & Tarbox, J. (2020, 30 avril). Taking ACTion: 18 Simple Strategies for Supporting Children with Autism During the COVID-19 Pandemic. PsyArXiv. 10.31234/osf.io/96whj
- Taylor, J. L. & Seltzer, M. M. (2011). Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood. Journal of autism and developmental disorders, 41(5), 566‑574. 10.1007/s10803-010-1070-3
- Townsend, E. A., Polatajko, H. J., & Cantin, N. (2013). Habiliter à l'occupation. Faire avancer la perspective ergothérapique de la santé, du bien-être et de la justice par l'occupation. 2 éd. Ottawa, ON: CAOT Publications ACE.
- van Heijst, B. F. C. & Geurts, H. M. (2015). Quality of life in autism across the lifespan: a meta-analysis. Autism: The International Journal of Research and Practice, 19(2), 158‑167. 10.1177/1362361313517053
- van Steensel, F. J. A., Bögels, S. M., & Perrin, S. (2011). Anxiety Disorders in Children and Adolescents with Autistic Spectrum Disorders: A Meta-Analysis. Clinical Child and Family Psychology Review, 14(3), 302‑317. 10.1007/s10567-011-0097-0
- Ville, I., Ravaud, J.-F., & Tetrafigap Group (2001). Subjective wellbeing and severe motor impairments: The tetrafigap survey on the long term outcome of tetraplegic spinal cord injured persons. Social Science and Medicine,52, 369-384.
- Vrkljan, B. H. & Polgar, J. M. (2007). Linking Occupational Participation and Occupational Identity: An Exploratory Study of the Transition from Driving to Driving Cessation in Older Adulthood. Journal of Occupational Science, 14(1), 30‑39. 10.1080/14 427591.2007.9686581
- White, S. W., & Roberson-Nay, R. (2009). Anxiety, social deficits, and loneliness in youth with autism spectrum disorders. Journal of autism and developmental disorders, 39(7), 1006-1013.
- Wiseman, L. & Whiteford, G. (2009). Understanding occupational transitions: A study of older rural men’s retirement experiences. Journal of Occupational Science, 16(2), 104‑109. 10.1080/14427591.2009.9686649
- Wright, B., Spikins, P., & Pearson, H. (2020). Should Autism Spectrum Conditions Be Characterised in a More Positive Way in Our Modern World?. Medicina, 56(5), 1-17; 10.3390/medicina56050233
- Zener, D. (2019). Journey to diagnosis for women with autism. Advances in Autism, 5(1), 2‑13. 10.1108/AIA-10-2018-0041