Résumés
Résumé
Les parents d’enfants et d’adolescents ayant un TSA vivent de nombreux défis, notamment dans leur relation conjugale. L’analyse qualitative d’entrevues individuelles conduites auprès de 42 parents, a permis de révéler quatre défis conjugaux particuliers à l’autisme : une perception d’iniquité dans les contributions de chacun à la vie familiale, un décalage des perceptions et réactions entre les mères et les pères concernant l’autisme, une difficulté à avoir des moments de qualité en amoureux et des difficultés émotives et psychologiques. Le modèle écosystémique proposé permet de mieux comprendre ces défis et de les situer à l’intérieur du contexte familial et social.
Mots-clés :
- couple,
- défis conjugaux,
- autisme,
- adolescent,
- parent
Abstract
Parents of childrens and adolescents with ASD face multiples challenges, including in their dyadic relationship. This qualitative analysis of 42 individual interviews conduct among parents of children and adolescents with autism highlight and explain four particulars challenges : iniquities among contributions of each parent to family life, differences between mother’s and father’s perceptions and reactions about autism, difficulties having time together as a couple, and emotional and psychological difficulties. The ecosystemic model allow a better understanding of these challenges and situate them in the familial and social context.
Keywords:
- couple,
- dyadic challenges,
- autism,
- adolescent,
- parenting
Parties annexes
Bibliographie
- American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders DSM-5. (5e éd.). American Psychiatric Publishing.
- Altiere, M. J. et von Kluge, S. (2009). Searching for acceptance: challenges encountered while raising a child with autism. Journal of Intellectual et Developmental Disability, 34(2), 142-152. doi : 10.1080/13668250902845202
- Aylaz, R., Yılmaz, U. et Polat, S. (2012). Effect of difficulties experienced by parents of autistic children on their sexual life : A qualitative study. Sexuality and Disability, 30(4), 395-406. doi : 10.1007/s11195-011-9251-3
- Baeza-Velasco, C., Michelon, C., Rattaz, C., Pernon, E. et Baghdadli, A. (2013). Separation of parents raising children with Autism Spectrum Disorders. Journal of Developmental and Physical Disabilities, 25(6), 613-624. doi : 10.1007/s10882-013-9338-0
- Bodenmann, G. (2005). Dyadic coping and its significance for marital functioning. Dans T. A. Revenson, K. Kayser et G. Bodenmann (dir.), Couples coping with stress : Emerging perspective on dyadic coping (p. 33-49). American Psychological Association.
- Braun, V. et Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101.
- Braunstein, V. L., Peniston, N., Perelman, A. et Cassano, M. C. (2013). The inclusion of fathers in investigations of autistic spectrum disorders. Research in Autism Spectrum Disorders, 7(7), 858-865. doi : 10.1016/j.rasd.2013.03.005
- Brien-Bérard, M., des Rivières-Pigeon, C. et Belleau, H. (2018). De l’idéal à la pratique : le partage d’argent de parents d’enfants ayant un trouble du spectre de l’autisme. Recherches féministes, 31(1), 199-217.
- Brobst, J. B., Clopton, J. R. et Hendrick, S. S. (2009). Parenting children with autism spectrum disorders : The couple’s relationship. Focus on Autism and Other Developmental Disabilities, 24(1), 38-49. doi: 10.1177/1088357608323699
- Bronfenbrenner, U. (1986). Ecology of the family as a context for human development : Research perspectives. Developmental Psychology, 22(6), 723-742.
- Courcy, I. et des Rivières-Pigeon, C. (2013). Déterminants sociaux de la santé et symptômes dépressifs chez les mères de jeunes enfants ayant un trouble du spectre de l’autisme. Revue canadienne de santé mentale communautaire / Canadian Journal of Community Mental Health, 32(3), 29-49. doi : 10.7870/cjcmh-2013-021
- Cridland, E. K., Jones, S. C., Magee, C. A. et Caputi, P. (2014). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18(3), 213-222. doi : 10.1177/1362361312472261
- de Lange, É. (2015). Étude exploratoire sur les changements dans les occupations et les rôles des membres d'une famille dont l'un des enfants présente un trouble du spectre de l’autisme : une étude de cas. (Mémoire de maîtrise, Université du Québec à Trois-Rivières). http://depot-e.uqtr.ca/7717/1/031078070.pdf
- Denis, J. (2013). Être parent d'un enfant autiste : difficultés vécues et répercussions sur sa santé et sur sa vie personnelle, conjugale, familiale, sociale et professionnelle. (Thèse de doctorat, Université du Québec à Chicoutimi). http://constellation.uqac.ca/2749/1/030569616.pdf
- des Rivières-Pigeon, C. et Courcy, I. (2014). L’emploi, le travail et « l’ouvrage ». Dans C. d. Rivières-Pigeon et I. Courcy (dir.), Autisme et TSA : Quelles réalités pour les parents au Québec? (p. 33-52). Presses de l’Université du Québec.
- des Rivières-Pigeon, C., Courcy, I., Boucher, C., Laroche, G., Poirier, N. et Galerand, E. (2015). Le travail domestique et de soin réalisé par les mères et les pères d’enfants présentant un trouble du spectre de l’autisme (TSA) au Québec. Rapport de recherche final préparé pour l’Office des personnes handicapées du Québec (OPHQ).
- Favez, N. (2013). La satisfaction conjugale. Dans L'examen clinique du couple : Théories et instruments d'évaluation (p. 151-170). Madraga.
- Fincham, F. D. et Rogge, R. (2010). Understanding relationship quality: Theoretical challenges and new tools for assessment. Journal of Family Theory et Review, 2(4), 227-242. doi : 10.1111/j.1756-2589.2010.00059.x
- Freedman, B. H., Kalb, L. G., Zablotsky, B. et Stuart, E. A. (2012). Relationship status among parents of children with autism spectrum disorders : a population-based study. Journal of Autism and Development Disorders, 42(4), 539-548. doi : 10.1007/s10803-011-1269-y
- Gau, S. S.-F., Chou, M.-C., Chiang, H.-L., Lee, J.-C., Wong, C.-C., Chou, W.-J. et Wu, Y.-Y. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6(1), 263-270. doi : 10.1016/j.rasd.2011.05.007
- Graham, J. M., Liu, Y. J. et Jeziorski, J. L. (2006). The dyadic adjustment scale: A reliability generalization meta-analysis. Journal of Marriage and Family, 68(3), 701-717.
- Gray, D. E. (2003). Gender and coping : the parents of children with high functioning autism. Social Science et Medicine, 56(3), 631-642. doi : 10.1016/S0277-9536(02)00059-X
- Harper, A., Dyches, T. T., Harper, J., Roper, S. O. et South, M. (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(11), 2604-2616. doi : 10.1007/s10803-013-1812-0
- Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G. et Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24(4), 449-457. doi : 10.1037/a0019847
- Hartley, S. L., Barker, E. T., Seltzer, M. M., Greenberg, J. S. et Floyd, F. J. (2011). Marital satisfaction and parenting experiences of mothers and fathers of adolescents and adults with autism. American Journal on Intellectual and Developmental Disabilities, 116(1), 81-95. doi:10.1352/1944-7558-116.1.81
- Hartley, S. L., Mihaila, I., Otalora‐Fadner, H. S. et Bussanich, P. M. (2014). Division of labor in families of children and adolescents with autism spectrum disorder. Family Relations : An Interdisciplinary Journal of Applied Family Studies, 63(5), 627-638. doi : 10.1111/fare.12093
- Hirsch, K. H. et Paquin, J. D. (2019). “The stress of the situation has changed us both”: A grounded theory analysis of the romantic relationship of parents raising children with autism. Journal of Child and Family Studies, 28, 2673-2689. doi : 10.1007/s10826-019-01448-y
- Hock, R. et Ahmedani, B. K. (2012). Parent perceptions of autism severity : Exploring the social ecological context. Disability and Health Journal, 5(4), 298-304. doi : 10.1016/j.dhjo.2012.06.002
- Hock, R. M., Timm, T. M. et Ramisch, J. L. (2012). Parenting children with autism spectrum disorders : a crucible for couple relationships. Child and Family Social Work, 17(4), 406-415. doi : 10.1111/j.1365-2206.2011.00794.x
- Ingersoll, B. et Hambrick, D. Z. (2011). The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 337-344. doi : 10.1016/j.rasd.2010.04.017
- Johnson, J. et Piercy, F. P. (2017). Exploring partner intimacy among couples raising children on the autism spectrum : A grounded theory investigation. Journal of Marital and Family Therapy, 43(4), 644-661. doi : 10.1111/jmft.12247
- Jones, L., Totsika, V., Hastings, R. P. et Petalas, M. A. (2013). Gender differences when parenting children with autism spectrum disorders : A multilevel modeling approach. Journal of Autism and Developmental Disorders, 43(9), 2090-2098. doi : 10.1007/s10803-012-1756-9
- Karst, J. S. et Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders : A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247-277. doi : 10.1007/s10567-012-0119-6
- Keizer, R. et Schenk, N. (2012). Becoming a parent and relationship satisfaction: A longitudinal dyadic perspective. Journal of Marriage and Family, 74(4), 759-773. doi : 10.1111/j.1741-3737.2012.00991.x
- Kent, M. C. (2011). Autism spectrum disorders and the family: A qualitative study (Thèse de doctorat, Wright Institute). Accessible par ProQuest Dissertations et Theses. (3459692)
- Kuhlthau, K., Payakachat, N., Delahaye, J., Hurson, J., Pyne, J. M., Kovacs, E. et Tilford, J. M. (2014). Quality of life for parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 8(10), 1339-1350. doi : 10.1016/j.rasd.2014.07.002
- Lavoie, A. et Fontaine, C. (2016). Mieux connaître la parentalité au Québec : Un portrait à partir de l’Enquête québécoise sur l’expérience des parents d’enfants de 0 à 5 ans 2015. Institut de la statistique du Québec. http://www.stat.gouv.qc.ca/statistiques/conditions-vie-societe/environnement-familial/eqepe.pdf.
- Lee, G. K. (2009). Parents of children with high functioning autism : How well do they cope and adjust? Journal of Developmental and Physical Disabilities, 21(2), 93-114. doi : 10.1007/s10882-008-9128-2
- McStay, R. L., Trembath, D. et Dissanayake, C. (2014). Stress and family quality of life in parents of children with autism spectrum disorder : Parent gender and the double ABCX model. Journal of Autism and Developmental Disorders, 44(12), 3101-3118. doi : 10.1007/s10803-014-2178-7
- Ministère de la Santé et des Services sociaux (2017). Des actions structurantes pour les personnes et leur famille: plan d’action sur le Trouble du Spectre de l’Autisme 2017-2022. La Direction des communications du ministère de la Santé et des Services sociaux.
- Minuchin, S. (1974). Families and family therapy. Harvard University Press.
- Minuchin, S. (1985). Families and individual development: Provocations from the field of family therapy. Child Development, 56(2), 289-302. doi : 10.2307/1129720
- Myers, B. J., Mackintosh, V. H. et Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache :” parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3(3), 670-684. doi : 10.1016/j.rasd.2009.01.004
- Ogston-Nobile, P. L. (2014). The division of family work among fathers and mothers of children with an autism spectrum disorder : Implications for parents and family functioning. (Thèse de doctorat, Virginia Commonwealth University, Richmond, Virginia). Accessible par ProQuest Dissertations et Theses. (3620623)
- Papp, L. M. et Hartley, S. L. (2019). Child-present and child-themed marital conflict in daily life of parents of children with and without autism spectrum disorder. Developmental Psychology, 55(1), 148-156.
- Pelchat, D., Lefebvre, H. et Levert, M. (2005). L’expérience des pères et mères ayant un enfant atteint d’un problème de santé : état actuel des connaissances. Enfances, Familles, Générations, (3), 56-77.
- Phelps, K. W., Hodgson, J. L., McCammon, S. L. et Lamson, A. L. (2009). Caring for an individual with autism disorder : A qualitative analysis. Journal of Intellectual et Developmental Disability, 34(1), 27-35. doi : 10.1080/13668250802690930
- Poirier, N. et des Rivières-Pigeon, C. (2013). Le trouble du spectre de l'autisme : État des connaissances. Presses de l'Université du Québec.
- Ramisch, J. L., Onaga, E. et Oh, S. M. (2014). Keeping a sound marriage : How couples with children with autism spectrum disorders maintain their marriages. Journal of Child and Family Studies, 23(6), 975-988. doi : 10.1007/s10826-013-9753-y
- Saini, M., Stoddart, K. P., Gibson, M., Morris, R., Barrett, D., Muskat, B., Nicholas, D., Rampton, G. et Zwaigenbaum, L. (2015). Couple relationships among parents of children and adolescents with autism spectrum disorder : Findings from a scoping review of the literature. Research in Autism Spectrum Disorders, 17, 142-157. doi : 10.1016/j.rasd.2015.06.014
- Sim, A., Cordier, R., Vaz, S. et Falkmer, T. (2016). Relationship satisfaction in couples raising a child with autism spectrum disorder: A systematic review of the literature. Research in Autism Spectrum Disorders, 31, 30-52. doi : 10.1016/j.rasd.2016.07.004
- Sim, A., Cordier, R., Vaz, S., Parsons, R. et Falkmer, T. (2017). Relationship satisfaction and dyadic coping in couples with a child with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(11), 3562-3573.
- Sim, A., Cordier, R., Vaz, S. et Falkmer, T. (2019). “We are in this together” : Experiences of relationship satisfaction in couples raising a child with autism spectrum disorder. Research in Autism Spectrum Disorders, 58, 39-51.
- Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T. et Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders : prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child et Adolescent Psychiatry, 47(8), 921-929.
- Spanier, G. B. (1976). Measuring dyadic adjustment: New scales for assessing the quality of marriage and similar dyads. Journal of Marriage and the Family, 38(1), 15-28. doi :10.2307/350547
- Tettamanti, M. (2016). Devenir parent en Suisse : une situation paradoxale. Dans J.-M. Le Goff et R. Levy (dir.), Devenir parents, devenir inégaux : Transition à la parentalité et inégalités de genre (p. 109-129). Éditions Seismo.
- Vohra, R., Madhavan, S., Sambamoorthi, U. et Peter, C. S. (2014). Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism, 18(7), 815-826. doi : 10.1177/1362361313512902
- Weber, P. H. (2011). A comparison of parental stress and marital/couple satisfaction as reported by parents raising children diagnosed with Pervasive Developmental Disorder : An online mixed methods study. (Thèse de doctorat, Texas Woman's University, Texas). (3497863)
10.7202/1050661ar