{"id":11041,"date":"2024-09-12T10:04:09","date_gmt":"2024-09-12T14:04:09","guid":{"rendered":"https:\/\/observatoireprocheaidance.ca\/trajectoire-des-parents-personnes-proches-aidantes-ppa-denfants-autistes\/"},"modified":"2026-07-17T16:15:37","modified_gmt":"2026-07-17T20:15:37","slug":"trajectory-of-parent-caregivers-of-autistic-children","status":"publish","type":"page","link":"https:\/\/observatoireprocheaidance.ca\/en\/trajectory-of-parent-caregivers-of-autistic-children\/","title":{"rendered":"Trajectory of Parent Caregivers of Autistic Children"},"content":{"rendered":"<div class=\"et_pb_section_0 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_0 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_0 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_0 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h1 style=\"text-align: center; opacity:0;\">Trajectory of Parent Caregivers of Autistic Children<\/h1>\n<\/div><\/div>\n\n<div class=\"et_pb_code_0 et_pb_code et_pb_module preset--group--divi-code--divi-transition--default\"><div class=\"et_pb_code_inner\">\n\t\t\t\t<p class=\"rs-p-wp-fix\"><\/p>\n\t\t\t\t<sr7-module data-alias=\"parents-ppa-en\" data-id=\"5\" id=\"SR7_5_1\" class=\"rs-ov-hidden\" data-version=\"6.7.57\">\n\t\t\t\t\t<sr7-adjuster><\/sr7-adjuster>\n\t\t\t\t\t<sr7-content>\n\t\t\t\t\t\t<sr7-slide id=\"SR7_5_1-9\" data-key=\"9\">\n\t\t\t\t\t\t<\/sr7-slide>\n\t\t\t\t\t\t<sr7-slide id=\"SR7_5_1-10\" data-key=\"10\">\n\t\t\t\t\t\t<\/sr7-slide>\n\t\t\t\t\t<\/sr7-content>\n\t\t\t\t\t<image_lists style=\"display:none\">\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/12\/Parents-PPA-EN-0.png\" data-libid=\"11834\" data-lib=\"medialibrary\" alt=\"Trajectory of Parent Caregivers of Autistic Children\" title=\"Parents-PPA-EN-0\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzEyL1BhcmVudHMtUFBBLUVOLTAucG5n\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-Who-are-they.png\" data-libid=\"11049\" data-lib=\"medialibrary\" alt=\"WHO ARE THEY?\" title=\"Parents-PPA-EN-Who-are-they\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLVdoby1hcmUtdGhleS5wbmc=\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-childs-symptoms-and-behaviours.png\" data-libid=\"11051\" data-lib=\"medialibrary\" alt=\"CHILD\u2019S 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data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLW9yZ2FuaXphdGlvbi1hbmQtYWNjZXNzLXRvLXNlcnZpY2VzLnBuZw==\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-age.png\" data-libid=\"11075\" data-lib=\"medialibrary\" title=\"Parents-PPA-EN-age\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLWFnZS5wbmc=\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-gender.png\" data-libid=\"11073\" data-lib=\"medialibrary\" alt=\"GENDER\" title=\"Parents-PPA-EN-gender\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLWdlbmRlci5wbmc=\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-socioeconomic-situation.png\" data-libid=\"11081\" data-lib=\"medialibrary\" alt=\"SOCIOECONOMIC SITUATION\" title=\"Parents-PPA-EN-socioeconomic-situation\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLXNvY2lvZWNvbm9taWMtc2l0dWF0aW9uLnBuZw==\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-ethnocultural-diversity.png\" data-libid=\"11083\" data-lib=\"medialibrary\" alt=\"ETHNOCULTURAL DIVERSITY\" title=\"Parents-PPA-EN-ethnocultural-diversity\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLWV0aG5vY3VsdHVyYWwtZGl2ZXJzaXR5LnBuZw==\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-entry-into-caregiving.png\" data-libid=\"11085\" data-lib=\"medialibrary\" alt=\"ENTRY INTO CAREGIVING\" title=\"Parents-PPA-EN-entry-into-caregiving\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLWVudHJ5LWludG8tY2FyZWdpdmluZy5wbmc=\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-the-start-of-schooling.png\" data-libid=\"11092\" data-lib=\"medialibrary\" alt=\"THE START OF SCHOOLING\" title=\"Parents-PPA-EN-the-start-of-schooling\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLXRoZS1zdGFydC1vZi1zY2hvb2xpbmcucG5n\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-reconfiguring-the-role-of-parent-caregiver.png\" data-libid=\"11102\" data-lib=\"medialibrary\" alt=\"RECONFIGURING THE ROLE OF PARENT CAREGIVER\" title=\"Parents-PPA-EN-reconfiguring-the-role-of-parent-caregiver\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLXJlY29uZmlndXJpbmctdGhlLXJvbGUtb2YtcGFyZW50LWNhcmVnaXZlci5wbmc=\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-the-end-of-caregiving.png\" data-libid=\"11104\" data-lib=\"medialibrary\" alt=\"THE END OF CAREGIVING\" title=\"Parents-PPA-EN-the-end-of-caregiving\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLXRoZS1lbmQtb2YtY2FyZWdpdmluZy5wbmc=\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-support-and-resources.png\" data-libid=\"11094\" data-lib=\"medialibrary\" alt=\"SUPPORT AND RESOURCES\" title=\"Parents-PPA-EN-support-and-resources\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLXN1cHBvcnQtYW5kLXJlc291cmNlcy5wbmc=\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-recognition-of-parent-caregivers.png\" data-libid=\"11098\" data-lib=\"medialibrary\" alt=\"RECOGNITION OF PARENT CAREGIVERS\" title=\"Parents-PPA-EN-recognition-of-parent-caregivers\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLXJlY29nbml0aW9uLW9mLXBhcmVudC1jYXJlZ2l2ZXJzLnBuZw==\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-place-of-residence.png\" data-libid=\"11077\" data-lib=\"medialibrary\" alt=\"PLACE OF RESIDENCE\" title=\"Parents-PPA-EN-place-of-residence\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLXBsYWNlLW9mLXJlc2lkZW5jZS5wbmc=\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-the-autism-diagnosis.png\" data-libid=\"11090\" data-lib=\"medialibrary\" alt=\"THE AUTISM DIAGNOSIS\" title=\"Parents-PPA-EN-the-autism-diagnosis\" width=\"0\" height=\"0\" data-dbsrc=\"Ly9vYnNlcnZhdG9pcmVwcm9jaGVhaWRhbmNlLmNhL3dwLWNvbnRlbnQvdXBsb2Fkcy8yMDI0LzExL1BhcmVudHMtUFBBLUVOLXRoZS1hdXRpc20tZGlhZ25vc2lzLnBuZw==\"\/>\n\t\t\t\t\t\t<img data-src=\"\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/Parents-PPA-EN-childs-transition-toward-adulthood.png\" 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_tpt.prepareModuleHeight({id:\"SR7_8_2\",el:[5360,5360,768,960,720],type:'standard',shdw:'0',gh:[5360,5360,4426,3363,2075],gw:[1240,1240,1024,778,480],vpt:['100px'],size:{fullWidth:true, fullHeight:false},mh:'0',onh:0,onw:0,bg:{color:'{\"orig\":\"transparent\",\"type\":\"solid\",\"string\":\"transparent\"}'}});   SR7.PMH[\"SR7_8_2\"].state=true;} else if(SR7.PMH[\"SR7_8_2\"].cn-->0)\tsetTimeout( SR7.PMH[\"SR7_8_2\"].fn,19);}};SR7.PMH[\"SR7_8_2\" ].fn();\n\t\t\t\t<\/script>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n<div class=\"et_pb_section_2 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_2 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_2 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_text_1 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module et_pb_text_align_center preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><a href=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/11\/20241126_OBS_trajectoire_parentPPA_en.pdf\" target=\"_blank\" rel=\"noopener\">Download the infographic (PDF)<\/a><\/p>\n<p><em>Last updated: October 2024<\/em><\/p>\n<p>To cite this document: Observatoire qu\u00e9b\u00e9cois de la proche aidance. (2024). <i>Trajectory of parent caregivers of autistic children<\/i>. CIUSSS du Centre-Ouest-de-l&#8217;\u00cele-de-Montr\u00e9al.<\/p>\n<p>Special thanks to Isabelle Courcy who has contributed to enriching the content of these publications.<\/p>\n<\/div><\/div>\n<\/div>\n<\/div>\n\n<div class=\"et_pb_row_3 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_3 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"et_pb_toggle_0 et_pb_toggle et_pb_toggle_item et_pb_toggle_close et_pb_module et_block_module list_spacing preset--group--divi-toggle--divi-transition--default\"><h2 class=\"et_pb_toggle_title\">References<\/h2><div class=\"et_pb_toggle_content clearfix\"><ol style=\"list-style-position: outside;\n  margin-left: 20px; padding-left:30px;\"><\/p>\n<li aria-level=\"1\">Institut national de sant\u00e9 publique du Qu\u00e9bec. (2017). <i>Surveillance du trouble du spectre de l\u2019autisme au Qu\u00e9bec<\/i>. <a target=\"_blank\" href=\"https:\/\/www.inspq.qc.ca\/sites\/default\/files\/publications\/2310_surveillance_trouble_spectre_autisme.pdf\" rel=\"noopener\">https:\/\/www.inspq.qc.ca\/sites\/default\/files\/publications\/2310_surveillance_trouble_spectre_autisme.pdf<\/a><\/li>\n<li aria-level=\"1\">L&#8217;appui pour les proches aidants. (2022). <i>Enqu\u00eate statistique sur la proche aidance au Qu\u00e9bec<\/i>. <a target=\"_blank\" href=\"https:\/\/www.lappui.org\/documents\/142\/Appui_Enquete-Proche-Aidant-2022.pdf\" rel=\"noopener\">https:\/\/www.lappui.org\/documents\/142\/Appui_Enquete-Proche-Aidant-2022.pdf<\/a><\/li>\n<li aria-level=\"1\">Ofner, M., Coles, A., Lou Decou, M., Do, M. T., Bienek, A., Snider, J. et Ugnat, A.-M. (2018). <i>Trouble du spectre de l\u2019autisme chez les enfants et les adolescents au Canada 2018<\/i>. 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A meta\u2010synthesis of parents\u2019 experiences of advocating for their child with autism spectrum disorder. <i>Child: Care, Health and Development<\/i>, <i>42<\/i>(6), 784\u2013797. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.1111\/cch.12383\" rel=\"noopener\">https:\/\/doi.org\/10.1111\/cch.12383<\/a><\/li>\n<li aria-level=\"1\">Courcy, I. et des Rivi\u00e8res-Pigeon, C. (2021), We&#8217;re responsible for the diagnosis and for finding help. The help-seeking trajectories of families of children on the autism spectrum. <i>Sociology of Health &amp; Illness, 43<\/i>, 40-57. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.1111\/1467-9566.13184\" rel=\"noopener\">https:\/\/doi.org\/10.1111\/1467-9566.13184<\/a><\/li>\n<li aria-level=\"1\">Rivard, M., Morin, M., Rochefort, C., Morin, D. et Mello, C. (2023). Barriers and facilitators to accessibility, continuity, validity, flexibility, and provider-family relationship along the diagnostic pathway in developmental disabilities. <i>Research in Developmental Disabilities, 139.<\/i> <a target=\"_blank\" href=\"https:\/\/doi.org\/10.1016\/j.ridd.2023.104570\" rel=\"noopener\">https:\/\/doi.org\/10.1016\/j.ridd.2023.104570<\/a><\/li>\n<li aria-level=\"1\">Mason, L. (2012). <i>Stresses of mothers caring for an older adolescent diagnosed with autism: A Phenomenological exploration <\/i>[Th\u00e8se de doctorat, Antioch University Seattle]. AURA.\u00a0 <a target=\"_blank\" href=\"https:\/\/aura.antioch.edu\/cgi\/viewcontent.cgi?article=1108&amp;context=etds\" rel=\"noopener\">https:\/\/aura.antioch.edu\/cgi\/viewcontent.cgi?article=1108&amp;context=etds<\/a><\/li>\n<li aria-level=\"1\">F\u00e9d\u00e9ration qu\u00e9b\u00e9coise de l\u2019autisme. (2023). <i>Pochette parent.<\/i> <a target=\"_blank\" href=\"https:\/\/www.autisme.qc.ca\/wp-content\/uploads\/2023\/09\/Pochette_parent-09-2023.pdf\" rel=\"noopener\">https:\/\/www.autisme.qc.ca\/wp-content\/uploads\/2023\/09\/Pochette_parent-09-2023.pdf<\/a><\/li>\n<li aria-level=\"1\">McConkey, R. et Samadi, S. A. (2013). The impact of mutual support on Iranian parents of children with an autism spectrum disorder: A longitudinal study. <i>Disability and Rehabilitation, 35<\/i>(9), 775\u2013784. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.3109\/09638288.2012.707744\" rel=\"noopener\">https:\/\/doi.org\/10.3109\/09638288.2012.707744<\/a><\/li>\n<li aria-level=\"1\">Pinchinat Jean-Charles, K. (2024). <i>Consultation provinciale en proche aidance aupr\u00e8s des communaut\u00e9s ethnoculturelles minoritaires et de langue anglaise<\/i>. Institut universitaire SHERPA. <a target=\"_blank\" href=\"https:\/\/sherpa-recherche.com\/wp-content\/uploads\/2024\/03\/Consultation-provinciale-proche-aidance-communautes-ethnoculturelles-langue-anglaise.pdf\" rel=\"noopener\">https:\/\/sherpa-recherche.com\/wp-content\/uploads\/2024\/03\/Consultation-provinciale-proche-aidance-communautes-ethnoculturelles-langue-anglaise.pdf<\/a><\/li>\n<li aria-level=\"1\">Zwaigenbaum, L., Brian, J.A. et Angie, I. (2019). Le d\u00e9pistage pr\u00e9coce du trouble du spectre de l\u2019autisme chez les jeunes enfants, <i>Paediatrics &amp; Child Health<\/i>, <i>24<\/i>(7), 433\u2013443. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.1093\/pch\/pxz120\" rel=\"noopener\">https:\/\/doi.org\/10.1093\/pch\/pxz120<\/a><\/li>\n<li aria-level=\"1\">Finnegan, R., Trimble, T. et Egan, J. (2014). Irish parents\u2019 lived experience of learning about and adapting to their child\u2019s autistic spectrum disorder diagnosis and their process of telling their child about their diagnosis. <i>The Irish Journal of Psychology, 35<\/i>(2\u20133), 78\u201390. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.1080\/03033910.2014.982143\" rel=\"noopener\">https:\/\/doi.org\/10.1080\/03033910.2014.982143<\/a><\/li>\n<li aria-level=\"1\">Kamga, K. K., De Vries, J., Nguefack, S., Munung, S. N. et Wonkam, A. (2020). Lived experiences of fragile X syndrome caregivers: A scoping review of qualitative studies. <i>Frontiers in Neurology, 11<\/i>, 128. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.3389\/fneur.2020.00128\" rel=\"noopener\">https:\/\/doi.org\/10.3389\/fneur.2020.00128<\/a><\/li>\n<li aria-level=\"1\">Centre int\u00e9gr\u00e9 universitaire de sant\u00e9 et de services sociaux du Centre-Sud-de-l&#8217;\u00cele-de-Montr\u00e9al. (2024). <i>Troubles du spectre de l&#8217;autisme<\/i>. Gouvernement du Qu\u00e9bec. <a target=\"_blank\" href=\"https:\/\/ciusss-centresudmtl.gouv.qc.ca\/soins-et-services\/troubles-du-spectre-de-lautisme\/programme-dintervention-comportementale-intensive-ici-pour-les-enfants-de-4-ans\" rel=\"noopener\">https:\/\/ciusss-centresudmtl.gouv.qc.ca\/soins-et-services\/troubles-du-spectre-de-lautisme\/programme-dintervention-comportementale-intensive-ici-pour-les-enfants-de-4-ans<\/a><\/li>\n<li aria-level=\"1\">Abouzeid, N. et Poirier, N. (2014). Perception des effets de l\u2019intervention comportementale intensive chez des enfants pr\u00e9sentant un trouble du spectre de l\u2019autisme. <i>Enfance en difficult\u00e9<\/i>,<i> 3<\/i>, 107\u2013137. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.7202\/1028014ar\" rel=\"noopener\">https:\/\/doi.org\/10.7202\/1028014ar<\/a><\/li>\n<li aria-level=\"1\">Dionne, C., Paquet, A., Joly, J., Rousseau, M. et Rivard, M. (2013) <i>L&#8217;intervention comportementale intensive (ICI) au Qu\u00e9bec : portrait de son implantation et mesure de ses effets chez l&#8217;enfant ayant un trouble envahissant du d\u00e9veloppement, sa famille et ses milieux. <\/i>Universit\u00e9 du Qu\u00e9bec \u00e0 Trois-Rivi\u00e8res, Fonds de recherche du Qu\u00e9bec &#8211; Soci\u00e9t\u00e9 et culture, Minist\u00e8re de la Sant\u00e9 et des Services sociaux. <a target=\"_blank\" href=\"https:\/\/frq.gouv.qc.ca\/app\/uploads\/2021\/08\/rapport_et_annexes__intervention_comportementale_intensive_ici.pdf\" rel=\"noopener\">https:\/\/frq.gouv.qc.ca\/app\/uploads\/2021\/08\/rapport_et_annexes__intervention_comportementale_intensive_ici.pdf<\/a><\/li>\n<li aria-level=\"1\">Pozo, P. et Sarri\u00e1, E. (2014). Prediction of stress in mothers of children with autism spectrum disorders. <i>The Spanish Journal of Psychology, 17<\/i>, E6. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.1017\/sjp.2014.6\" rel=\"noopener\">https:\/\/doi.org\/10.1017\/sjp.2014.6<\/a><\/li>\n<li aria-level=\"1\">Fontil, L. (2019). <i>Transition to school for children with autism spectrum disorders: Review of the literature, policy implications, and intervention efficacy<\/i> [Th\u00e8se de doctorat, McGill University]. eScholarship. <a target=\"_blank\" href=\"https:\/\/escholarship.mcgill.ca\/concern\/theses\/44558j45n\" rel=\"noopener\">https:\/\/escholarship.mcgill.ca\/concern\/theses\/44558j45n<\/a><\/li>\n<li aria-level=\"1\">Brisini, K. St. C. et Solomon, D. H. (2020). Relational turbulence and marital communication when children with autism start school: A longitudinal dyadic diary study. <i>Health Communication, 35<\/i>(4), 483\u2013493. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.1080\/10410236.2019.1567445\" rel=\"noopener\">https:\/\/doi.org\/10.1080\/10410236.2019.1567445<\/a><\/li>\n<li aria-level=\"1\">F\u00e9d\u00e9ration qu\u00e9b\u00e9coise de l&#8217;autisme. (s.d.). <i>L\u2019expertise parentale<\/i>. <a target=\"_blank\" href=\"https:\/\/www.autisme.qc.ca\/je-travaille-en-autisme\/expertice-parentale\/\" rel=\"noopener\">https:\/\/www.autisme.qc.ca\/je-travaille-en-autisme\/expertice-parentale\/<\/a><\/li>\n<li aria-level=\"1\">Rivard, M., L\u00e9pine, A., Mercier, C. et Morin, M. (2015). Quality determinants of services for parents of young children with autism spectrum disorders. <i>Journal of Child and Family Studies, 24<\/i>(8), 2388\u20132397. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.1007\/s10826-014-0041-2\" rel=\"noopener\">https:\/\/doi.org\/10.1007\/s10826-014-0041-2<\/a><\/li>\n<li aria-level=\"1\">F\u00e9d\u00e9ration qu\u00e9b\u00e9coise de l\u2019autisme. (2019). <i>Portrait de la situation des milieux de vie autre que le milieu familial d\u2019origine des adultes autistes.<\/i> <a target=\"_blank\" href=\"https:\/\/www.autisme.qc.ca\/wp-content\/uploads\/2023\/06\/Memoire_Hebergement.pdf\" rel=\"noopener\">https:\/\/www.autisme.qc.ca\/wp-content\/uploads\/2023\/06\/Memoire_Hebergement.pdf<\/a><\/li>\n<li aria-level=\"1\">V\u00e9rificateur g\u00e9n\u00e9ral du Qu\u00e9bec. (2013). <i>Rapport du V\u00e9rificateur g\u00e9n\u00e9ral du Qu\u00e9bec \u00e0 l\u2019Assembl\u00e9e nationale pour l\u2019ann\u00e9e 2013-2014 : Chapitre 2- D\u00e9ficience intellectuelle et troubles envahissants du d\u00e9veloppement<\/i>. <a target=\"_blank\" href=\"https:\/\/www.vgq.qc.ca\/Fichiers\/Publications\/rapport-annuel\/2013-2014-VOR-Printemps\/fr_Rapport2013-2014-VOR-Chap02.pdf\" rel=\"noopener\">https:\/\/www.vgq.qc.ca\/Fichiers\/Publications\/rapport-annuel\/2013-2014-VOR-Printemps\/fr_Rapport2013-2014-VOR-Chap02.pdf<\/a><\/li>\n<li aria-level=\"1\">Protecteur du citoyen. (2012). <i>Rapport sp\u00e9cial du Protecteur du citoyen : Les services aux jeunes et aux adultes pr\u00e9sentant un trouble envahissant du d\u00e9veloppement : de l\u2019engagement gouvernemental \u00e0 la r\u00e9alit\u00e9<\/i>. <a target=\"_blank\" href=\"https:\/\/protecteurducitoyen.qc.ca\/sites\/default\/files\/pdf\/rapports_speciaux\/2012-05-23_rapport_ted_2.pdf\" rel=\"noopener\">https:\/\/protecteurducitoyen.qc.ca\/sites\/default\/files\/pdf\/rapports_speciaux\/2012-05-23_rapport_ted_2.pdf<\/a><\/li>\n<li aria-level=\"1\">Kuo, H. J., Chun, J., Lee, G. et Curtiss, S. (2021). Competencies and preferences of online psycho-education for caregivers of transition-aged autistic youth. <i>Journal of Enabling Technologies<\/i>, <i>15<\/i>(4), 268\u2013280. <a target=\"_blank\" href=\"https:\/\/doi.org\/10.1108\/JET-03-2021-0014\" rel=\"noopener\">https:\/\/doi.org\/10.1108\/JET-03-2021-0014<\/a><\/li>\n<\/ol>\n<\/div><\/div>\n<\/div>\n<\/div>\n<\/div>\n\n<div class=\"et_pb_section_3 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\n<div class=\"et_pb_row_4 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\n<div class=\"et_pb_column_4 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\n<div class=\"el_modal_popup_0 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_6\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"who-are-they\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_4 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\r\n<div class=\"et_pb_row_5 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\r\n<div class=\"et_pb_column_5 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\r\n<div class=\"et_pb_text_2 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>WHO ARE THEY?<\/strong><\/h3>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_0 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/statistics.png\" width=\"37\" height=\"37\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/statistics.png 37w\" sizes=\"(max-width: 37px) 100vw, 37px\" class=\"wp-image-9740\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">STATISTICS<\/h4><div class=\"et_pb_blurb_description\"><p>In 2014\u20132015 in Quebec, some 17,000 young people aged 17 and under had been diagnosed with an autism spectrum disorder (1). However, there is no statistical data regarding the precise number of parent caregivers of autistic children. Nevertheless, a 2022 survey conducted by L\u2019Appui involving 1,838 caregivers indicated that 3% of all care recipients were autistic (2).<\/p>\n<\/div><\/div><\/div><\/div>\r\n\r\n<div class=\"et_pb_text_3 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The term <em>parent caregivers of autistic children<\/em> refers to parents whose child has an autism spectrum disorder (ASD), whether diagnosed or not and regardless of the level of severity.<\/p>\n<p>Autism is a neurodevelopmental disorder that manifests in different ways and can affect sensory processing, social communication, the ability to perform certain tasks, and the management of emotions and behaviours (3). As a result, autistic children may require additional support from their parents. In these cases, parents take on the dual roles of parent and caregiver.<\/p>\n<p>The caring responsibilities assumed by parent caregivers of autistic children often focus on helping their child develop their autonomy, motor skills, language, communication and social skills, while also addressing their specific needs.<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_1 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/files-green.png\" width=\"35\" height=\"35\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/files-green.png 35w\" sizes=\"(max-width: 35px) 100vw, 35px\" class=\"wp-image-9742\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p>This trajectory focuses on parent caregivers of autistic children by highlighting the various factors liable to influence their role as a care provider along with the related challenges. The realities and challenges experienced by autistic children, while extremely important in their own right, are not addressed here.<\/p>\n<\/div><\/div><\/div><\/div>\r\n<\/div>\r\n<\/div>\r\n<\/div><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_1 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_7\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"family-situation\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_5 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_6 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_6 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_4 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>FAMILY SITUATION <\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_5 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Various aspects of the parent caregiver\u2019s family situation may influence their caregiving trajectory.<\/p>\n<p>For instance:<\/p>\n<ul>\n<li>In single-parent households, parenting and caregiving responsibilities fall upon one person only and can therefore be experienced as a greater burden (13).<\/li>\n<li>When other siblings are present, they may sometimes be given more responsibilities to lessen the load for their parents (e.g., helping to prepare meals, taking care of younger siblings) (14).<\/li>\n<li>When the autistic child has an older sibling who also has an autism diagnosis, the parents may find certain steps more manageable, having been through the same process with their first child (13).<\/li>\n<\/ul>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_2 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_8\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"age\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_6 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_7 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_7 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_6 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>AGE<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_7 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The age of the caregiver influences their experience. Caregivers who are 75 years of age and older are more likely to spend more hours on caregiving activities (51). Retired older caregivers may have the capacity to devote significant time to caregiving; however, this is seldom how they imagined their later years (10). While some studies suggest that older caregivers cope very well and experience fewer financial hardships compared to younger groups, potentially due to accumulated life experience, other research indicates that they still face significant mental health challenges (51, 16). At the same time, many caregivers are themselves aging\u2014particularly spousal caregivers\u2014who must balance their own health challenges while providing care and support to their partner (127).<\/p>\n<p>Younger to middle-aged caregivers (35\u201364 years old) are particularly vulnerable to negative health impacts because they often simultaneously balance employment, parenting, and caregiving (146). This triple load decreases time and energy to fulfill their responsibilities (146). Whereas older adults might face more physical limitations, younger caregivers are more at risk of psychological distress (16). Financial strain is also common, as these caregivers may face limited resources, vocational instability, childcare expenses, and have fewer savings, leaving little margin to absorb the costs of caregiving (10, 19). These responsibilities can interfere with key personal milestones such as career advancement.\u00a0<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_3 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_9\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"gender\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_7 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_8 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_8 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_8 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>GENDER<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_9 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The primary caregivers for autistic children are most often their mothers (6, 14, 16). This may be due to societal expectations related to the provision of care, which are higher for women due to their gender and their role as mothers. Additionally, since women typically hold lower-paying, less prestigious jobs, they are more likely to reduce their hours or stop working altogether to care for their child (17).  <\/p>\n<\/div><\/div><div class=\"et_pb_text_10 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Their greater involvement with their child, additional domestic duties (e.g., cleaning, meal preparation, overseeing the practical aspects of family life) and limited personal time make mother caregivers more apt to experience mental health issues (e.g., depression) than father caregivers (10, 21). They are also more likely to suffer the negative impacts of caregiving (10, 16, 21). <\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_4 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_10\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"childs-symptoms-and-behaviours\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_8 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_9 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_9 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_11 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>CHILD\u2019S SYMPTOMS AND BEHAVIOURS<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_12 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Autism can manifest through a wide range of symptoms and behaviours that can be difficult to manage. The challenges in caring for a child with autism can persistently and significantly affect family dynamics, physical and mental health, sleep and the social lives of the child\u2019s parents (4, 5, 6, 7, 8, 9). Indeed, the parents of autistic children are believed to be more likely to suffer from anxiety and depression than other parents. The severity of the child\u2019s impairment has a direct impact on the levels of stress experienced by their parents, regardless of the child\u2019s age (7, 10). To fully grasp the situation of parent caregivers, it is essential to understand the symptoms and behaviours of autism.<\/p>\n<\/div><\/div><div class=\"et_pb_text_13 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Autism may be accompanied by other conditions (e.g., intellectual disability, epilepsy, sleep disorders, anxiety, depression, obsessive thoughts, compulsive behaviours) that increase the complexity of the support required from parents (11, 12).<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_5 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_11\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"stigma\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_9 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\r\n<div class=\"et_pb_row_10 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\r\n<div class=\"et_pb_column_10 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\r\n<div class=\"et_pb_text_14 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>STIGMA<\/strong><\/h3>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_15 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Autistic children and their parents may experience situations of social exclusion and marginalization due to features of the disorder that can lead to atypical, challenging or disruptive behaviours. For parent caregivers, stigma can take the form of having their parenting abilities held up to question by others, which can induce feelings of guilt (13).<\/p>\n<p>Lack of knowledge about autism on the part of family, friends and the broader community can cause the parents to be judged or their child to be seen solely through the lens of their diagnosis (15). Stigma can be harmful to the autistic child, their parent caregivers and the family as a whole, being a significant source of stress and frustration and leaving parents with a vivid sense of isolation (16).<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_2 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p><span style=\"font-size: 15px;\">My friends don\u2019t have children with difficulties, so they can\u2019t really understand what I\u2019m going through. If I feel like I\u2019m losing my mind because my son\u2019s woken up six times during the night, they don\u2019t get it. I can\u2019t confide in them; they\u2019ll think I\u2019m crazy. They just don\u2019t know what it\u2019s like. [free translation]<br \/><strong>Mother of an autistic child (cited in 17) <\/strong><\/span><\/p>\n<\/div><\/div><\/div><\/div>\r\n<\/div>\r\n<\/div>\r\n<\/div><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_6 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_13\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"parental-advocacy\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_10 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_11 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_11 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_16 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>PARENTAL ADVOCACY<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_17 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>To ensure their child\u2019s acceptance and integration into society, parent caregivers of autistic children must often advocate for their child (e.g., defend their right to access education or participate in activities). This not only provides an opportunity to raise awareness about their situation, but it also allows them to (re)gain control over their life and shift their focus to solutions (18). Still, their efforts to defend their child\u2019s rights can lead to parents being labeled, excluded or perceived as disruptive by other parents (18), an ongoing battle that can be very isolating.<\/p>\n<\/div><\/div><div class=\"et_pb_text_18 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Many factors can hinder or complicate parent caregivers\u2019 ability to advocate for their child, including:<\/p>\n<ul>\n<li>Limited socio-economic resources;<\/li>\n<li>Inconvenient working hours and limited availability;<\/li>\n<li>Language barriers;<\/li>\n<li>Poor or incomplete understanding of autism and their child\u2019s rights (18). <\/li>\n<\/ul>\n<p>As is often the case, the families with the fewest resources are those who are the least able to make themselves heard. <\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_7 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_14\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"organization-and-access-to-services\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_11 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\r\n<div class=\"et_pb_row_12 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\r\n<div class=\"et_pb_column_12 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\r\n<div class=\"et_pb_text_19 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>ORGANIZATION AND ACCESS TO SERVICES <\/strong><\/h3>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_20 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Being able to access supports and services has a decisive influence on the trajectories of parent caregivers of autistic children. The access to specialized services is organized and designed based on the prior receipt of an autism diagnosis for the child. However, limited access to family doctors and specialists can make obtaining a diagnosis difficult (19). In Canada, families can wait up to three years to begin the assessment that will lead to eventual diagnosis (20). As a result, parent caregivers often have to turn to private \u2014 and more costly \u2014 resources to navigate what is already a challenging process (19). (For more information on this topic, see the section entitled <em>Autism diagnosis<\/em>)<\/p>\n<p>In Quebec, even when a diagnosis is obtained, the persistent lack of public-sector resources mean that children cannot be guaranteed to receive the services they need (19).<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_3 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p><span style=\"font-size: 15px;\">There were no services when we got out of hospital. I found myself on a waiting list with more than a two-year wait. That\u2019s very long for a child whose inflexibilities and anxieties are only going to get worse! What\u2019s even worse is that there are kids who\u2019ll never be able to access services at all. It\u2019s just hell. [free translation]<br \/><strong>Mother of an autistic child (cited in 17) <\/strong><\/span><\/p>\n<\/div><\/div><\/div><\/div>\r\n\r\n<div class=\"et_pb_text_21 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Often, the children who are prioritized are those with the most severe symptoms. These children will go on to obtain services from the health and social services system, forcing the parents of children with less severe symptoms to either continue waiting or else turn to private resources. Having to pay for services can have significant financial repercussions for families in which one parent \u2014 most often the mother \u2014 has to stop working or reduce their working hours, and thus their income, in order to care for their child (17).<\/p>\n<p>A similar situation occurs in the educational system, where the dearth of resources hinders the ability to meet the needs of all children or provide optimal learning conditions. As a result, parents must play an active role in ensuring their child receives the support they need from a system ill-equipped to address the specific challenges of autism (13).<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_22 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The multiple barriers to service access in the healthcare, social services and education systems often leave autistic children and their families without the support they need. Nonetheless, this support is essential to promoting the mental and physical health and wellness of both parent caregivers and their children.<\/p>\n<\/div><\/div>\r\n<\/div>\r\n<\/div>\r\n<\/div><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_8 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_15\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"place-of-residence\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_12 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_13 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_13 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_23 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>PLACE OF RESIDENCE<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_24 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Where a family lives will influence their caregiving trajectory. In urban areas where healthcare, education and social services are more concentrated, families typically have easier access to a wide range of specialized resources (13). However, in rural or remote areas, access to these services may be limited and the distances required to travel to obtain them, long and costly, entailing additional burdens for the family (20). Compounding the situation is the fact that many regions suffer from staff shortages, which can increase service wait times.<\/p>\n<p>These geographic disparities create unequal access to care and services, thus heightening the health and wellness gaps between parent caregivers of autistic children who live in different areas.<\/p>\n<\/div><\/div><div class=\"et_pb_text_25 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Some parent caregivers may decide to move to a region that is better served so as to improve their chances of receiving the support they need.<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_9 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_16\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"socioeconomic-situation\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_13 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\r\n<div class=\"et_pb_row_14 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\r\n<div class=\"et_pb_column_14 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\r\n<div class=\"et_pb_text_26 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>SOCIOECONOMIC SITUATION <\/strong><\/h3>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_27 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Raising a child with autism can have a financial impact on parent caregivers inasmuch as it can entail more expenses than raising a child without a neurodevelopmental disorder (10). Many parent caregivers of autistic children find themselves in situations of financial precarity, not the least because in many cases, one parent \u2014 most often the mother \u2014 must stay home to care for the child, resulting in a loss of family income.<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_4 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p><span style=\"font-size: 15px;\">I manage Jaden\u2019s therapies, insurance, um, I don\u2019t know how I\u2019d be able to do half the stuff I do if I had a full-time job . . . I\u2019m sure I\u2019d be fired and I definitely wouldn\u2019t be able to work in the home either saying \u2018okay, here\u2019s my four hours or whatever\u2019 close the door.<br \/><strong>Mother of an autistic child (cited in 14)<\/strong><\/span><\/p>\n<\/div><\/div><\/div><\/div>\r\n\r\n<div class=\"et_pb_text_28 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Furthermore, having to turn to services, treatments and\/or professional supports that are not covered by insurance (e.g., educational therapies, speech therapy, occupational therapy, specialized education and stimulation services, tutoring, family coaching) can further drain the family\u2019s financial resources (10, 22).<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_29 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Parents with higher incomes and education levels can dedicate more time, effort and resources to navigating complex systems, particularly the education system, thereby securing more supports and services for their child (18). Furthermore, higher-income families are more likely to benefit from government financial assistance programs in the form of non-refundable tax credits, which are unavailable to low-income families who pay less or no income tax. Higher-income families are also more likely to access employer-provided insurance programs that cover certain private services (13). Not only do financial challenges affect access to services, but they can also cause parent caregivers additional stress and psychological distress (10).<\/p>\n<\/div><\/div>\r\n<\/div>\r\n<\/div>\r\n<\/div><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_10 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_17\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"ethnocultural-diversity\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_14 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\r\n<div class=\"et_pb_row_15 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\r\n<div class=\"et_pb_column_15 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\r\n<div class=\"et_pb_text_30 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>ETHNOCULTURAL DIVERSITY <\/strong><\/h3>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_31 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Ethnic and cultural differences can affect the role of parent caregivers of autistic children. In some cultures where neurodevelopmental disorders are less understood (and therefore rarely discussed), parent caregivers and their social networks are apt to be less informed about ASD. Having a child with autism may also be perceived as a source of shame (7).<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_5 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p><span style=\"font-size: 15px;\">Generally we receive no informal support. Our family tell us that there is no point in spending your time and money for your daughter. She is mad! Just one or two times they have helped.<br \/><strong>Parent caregiver of an autistic child (cited in 23)<\/strong><\/span><\/p>\n<\/div><\/div><\/div><\/div>\r\n\r\n<div class=\"et_pb_text_32 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Parent caregivers from minority groups are more likely to experience discrimination, face traumatic events or have their needs minimized in a health and social services system lacking in culturally appropriate services. They may also be underinformed about autism in general and less aware of available services (7, 23, 24). As a result, these parents may face greater struggles in helping their child integrate into society, obtaining support from their family, friends and community, and accessing services tailored to their needs (7).<\/p>\n<\/div><\/div>\r\n<\/div>\r\n<\/div>\r\n<\/div><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_11 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_18\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"entry-into-caregiving\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_15 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_16 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_16 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_33 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>ENTRY INTO CAREGIVING <\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_34 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Autism is a neurodevelopmental disorder that is present from birth. Early signs may appear during early childhood, typically around the age of two (25). Parent caregivers of autistic children often take on their caregiving role as a matter of course with the emergence of the first signs and behaviours. While these may be observed early on by the parents, their family, their social circle or healthcare professionals, they can also only become apparent later, especially when symptoms are less common or severe. The initial concerns of parent caregivers often serve as a stepping stone toward their subsequent search for information and support (19).<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_12 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_19\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"the-end-of-caregiving\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_16 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_17 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_17 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_35 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>THE END OF CAREGIVING<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_36 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Many parents of autistic children continue to play the role of caregiver throughout their lives. Depending on the child\u2019s needs, they may need to provide varying levels of support well beyond adulthood, and this continues until they are no longer able to do so. In fact, in most cases, the end of the caregiving trajectory only comes when the parent dies.<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_13 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_20\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"reconfiguring-the-role-of-parent-caregiver\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_17 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_18 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_18 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_37 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>RECONFIGURING THE ROLE OF PARENT CAREGIVER<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_38 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>When a child with autism becomes an adult, the role of parent caregivers may be reconfigured, shaped by both their own realities and those of their child. More concretely, parents may shift from a role of intensive, direct support to one that is less demanding and more distant. There can be multiple phases of reconfiguration in the trajectory, depending on the life changes affecting both parents and child.<\/p>\n<p>One factor with a significant influence in this sense is whether or not the child continues to live at home. Moving out of the family home, while it is unlikely to mark the end of caregiving, nonetheless signals the start of a new phase in the caregiving trajectory, one that involves reassessing tasks and adjusting to the child\u2019s changing needs.<\/p>\n<p>The process of role reconfiguration may prompt parents to redefine their identity, presenting the opportunity to reassess priorities, redraw boundaries and modify personal and professional aspirations. It can also alter their position within the family and society as well as their self-perception.<\/p>\n<\/div><\/div><div class=\"et_pb_blurb_6 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image et_animated\"><span class=\"et_pb_image_wrap et_pb_only_image_mode_wrap\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/files-green.png\" width=\"35\" height=\"35\" srcset=\"https:\/\/observatoireprocheaidance.ca\/wp-content\/uploads\/2024\/09\/files-green.png 35w\" sizes=\"(max-width: 35px) 100vw, 35px\" class=\"wp-image-9742\" \/><\/span><\/div><div class=\"et_pb_blurb_container\"><h4 class=\"et_pb_module_header\">NOTE<\/h4><div class=\"et_pb_blurb_description\"><p>Little information in the sources consulted deals specifically with the reconfiguration of the caregiver role among the parents of autistic children who have reached adulthood.<\/p>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_14 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_21\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"the-start-of-schooling\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_18 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_19 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_19 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_39 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>THE START OF SCHOOLING<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_40 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Going to school is an important turning point for both the autistic child and their parent caregivers. Depending on the child\u2019s needs, their parents\u2019 wishes, the school\u2019s available resources and whether or not a diagnosis has been received, autistic children may be placed in a regular classroom or in a special-education class or school (13, 22).<\/p>\n<p><strong>When the diagnosis is made before the child starts school: <\/strong><\/p>\n<ul>\n<li>Special provisions are more likely to be made for the child once they enter school \u2014 for example, being allowed to attend kindergarten on a part-time basis or have a teacher\u2019s aide (13).<\/li>\n<li>The child is more likely to have benefited from specialized services like an intensive behavioural intervention program before starting school (13, 32).<\/li>\n<\/ul>\n<p><strong>When the diagnosis is only made after the child has started school:<\/strong><\/p>\n<ul>\n<li>The child may need to change schools if their current establishment is unable to provide the appropriate services (13).<\/li>\n<\/ul>\n<\/div><\/div><div class=\"et_pb_text_41 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><strong>Repercussions<br \/><\/strong>The start of schooling and its many attendant disruptions (changes to the routine, new people in the child\u2019s life, etc.) can significantly affect the relationship between the child\u2019s parents. However, when parent caregivers adopt a more open communication style that fosters connection and trust between them, the negative impact of the transition may be reduced (33).<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_15 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_22\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"recognition-of-parent-caregivers\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_19 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_20 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_20 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_42 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>RECOGNITION OF PARENT CAREGIVERS<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_43 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Recognition of the support needs and expertise of parent caregivers by professionals can greatly influence their caregiving trajectory.<\/p>\n<p style=\"text-align: center;\"><strong>RECOGNIZING SUPPORT NEEDS<\/strong><\/p>\n<p>Parents generally have little difficulty recognizing their child\u2019s needs. However, when a neurodevelopmental disorder is at play, they can struggle to acknowledge their own needs as caregivers (13). Parenting a child with autism can entail an immense commitment in terms of ensuring the child\u2019s education, providing stimulation, seeking help, monitoring their condition and providing day-to-day care and support. This substantial investment of time, energy and resources can have significant repercussions for parent caregivers, particularly in terms of their well-being, economic security, employment situation, relationship with each other and social life (34).<\/p>\n<\/div><\/div><div class=\"et_pb_text_44 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>For parent caregivers, recognizing their own needs is prerequisite to obtaining specific services. Since parents tend to focus on their child\u2019s needs, professionals who work with the child have a role to play in helping parent caregivers acknowledge their own needs (17). Once they do, it becomes easier for them to seek out support and resources for themselves.<\/p>\n<\/div><\/div><div class=\"et_pb_text_45 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><strong>RECOGNIZING PARENTAL EXPERTISE<\/strong><\/p>\n<p style=\"text-align: left;\">Throughout their trajectory, parent caregivers develop a deep understanding of their child\u2019s unique characteristics \u2014 for example, their particular strengths, challenges, preferences, interests and ways of interacting (34). However, while the importance of including families in interventions for children with autism is widely recognized, their expertise can be overlooked by staff across a range of settings.<\/p>\n<p>Acknowledging the expertise of parent caregivers by educators, health professionals and social service providers allows for:<\/p>\n<ul>\n<li>interventions to be better adapted to the child\u2019s specific characteristics;<\/li>\n<li>common goals to be established in keeping with the parents\u2019 concerns;<\/li>\n<li>learning from the parents\u2019 daily experiences to improve interventions with the child (34).<\/li>\n<\/ul>\n<\/div><\/div><div class=\"et_pb_text_46 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Families with fewer socioeconomic resources experience the greatest difficulty in having their expertise and parenting skills recognized. Parent caregivers in these families also face greater challenges in being included in decisions made by professionals in clinical and specialized intervention settings (34).<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_16 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_23\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"support-and-resources\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_20 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_21 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_21 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_47 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>SUPPORT AND RESOURCES<\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_48 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Support and resources for parent caregivers of autistic children can play a major role in the caregiving trajectory. Such support may come from different sources and take many forms.<\/p>\n<\/div><\/div><div class=\"et_pb_text_49 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><strong>SERVICES FOR THE CHILD<\/strong><\/p>\n<p>Services and resources that provide effective support for the child remain among the best ways of supporting parent caregivers as well, equipping them to better understand their child\u2019s reactions and intervene appropriately (17).<\/p>\n<\/div><\/div><div class=\"et_pb_text_50 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><strong>Repercussions<br \/><\/strong>Making diverse and flexible support services and resources available to autistic children significantly eases the burden on their parent caregivers (35), whose stress and anxieties may diminish as they regain a sense of control over the daily challenges they face. In accessing the appropriate services for their child, parents feel less isolated and better equipped to meet their child\u2019s needs, which helps improve quality of life for the whole family.<\/p>\n<\/div><\/div><div class=\"et_pb_text_51 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><strong>SUPPORT FROM FAMILY AND FRIENDS<\/strong><\/p>\n<p>Parent caregivers cite support from family and friends as among the strategies they use to cope with the challenges of raising an autistic child (15, 27).<\/p>\n<\/div><\/div><div class=\"et_pb_text_52 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><strong>Repercussions<br \/><\/strong>The advice, support and assistance received from those around them can serve as a protective factor for parent caregivers. Indeed, parents who receive more support from their network report feeling less distress related to their caregiving duties (5). However, some find they cannot rely on help from loved ones; others may feel misunderstood, judged or rejected by people in their social circle (21). In these situations, they may experience a great deal of isolation (16).<\/p>\n<\/div><\/div><div class=\"et_pb_text_53 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><strong>SUPPORT GROUPS AND PEER SUPPORT<\/strong><\/p>\n<p>Support groups are highly appreciated by parent caregivers, who feel validated and less alone when they can talk to others who experience and understand their situation (6, 21). Furthermore, connecting with other parents in similar situations, whether through support groups, social media or acquaintances, can help parent caregivers gain a better understanding of autism, the available services and how to access them.<\/p>\n<\/div><\/div><div class=\"et_pb_text_54 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><strong>RESPITE SERVICES<\/strong><\/p>\n<p>Respite services aim to provide a safe space and supervision for the child while allowing parents to get some time to themselves. These services free up parents to complete tasks, engage in activities or simply get some rest. Parent caregivers tend to wait until their child is a teenager before requesting this type of support (13), since they feel more comfortable leaving an older child in the hands of others.<\/p>\n<\/div><\/div><div class=\"et_pb_text_55 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><strong>Repercussions<br \/>\n<\/strong>These moments of respite help reduce the ongoing stress associated with caring for an autistic child. They also help lower the risk of caregiver burnout and allow parents to reconnect with other areas of their lives. <\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_17 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_24\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"childs-transition-toward-adulthood\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\">\n<div class=\"et_pb_section_21 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\"><div class=\"et_pb_row_22 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\"><div class=\"et_pb_column_22 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\"><div class=\"et_pb_text_56 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>CHILD\u2019S TRANSITION TOWARD ADULTHOOD <\/strong><\/h3>\n<\/div><\/div><div class=\"et_pb_text_57 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>The transition toward adulthood is a period of great change for parent caregivers and their autistic children.<\/p>\n<\/div><\/div><div class=\"et_pb_text_58 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><strong>WORRIES ABOUT THE FUTURE<\/strong><\/p>\n<p>Children with autism may have difficulty developing the skills needed to live independently. Some autistic people may need lifelong support (10).<\/p>\n<p>Parental concerns may intensify as the child approaches adulthood. For example, parents may feel anxious about their ability to continue supporting their child as they themselves age, or experience guilt at the thought of no longer being able to care for their child.<\/p>\n<\/div><\/div><div class=\"et_pb_text_59 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><strong>CHANGES AND CHOICES<\/strong><\/p>\n<p>The transition to adulthood by a child with autism brings with it many changes that require parent caregivers to make important and often complex decisions. These decisions must take into account the child\u2019s wishes and capacities, the family\u2019s desires, needs and financial means, and the available support resources.<\/p>\n<p>This period is often linked to:<\/p>\n<ul style=\"margin-bottom: 0; padding-bottom: 0;\">\n<li>Changes in services\n<ul>\n<li>Parents must often learn to navigate new support structures (e.g., adult services) once their child is no longer eligible for the services they had received during childhood and adolescence.<\/li>\n<li>The end of studies after the age of 21 often means a loss of crucial services.<\/li>\n<\/ul>\n<\/li>\n<li>Questions about what comes after high school\n<ul>\n<li>Parent caregivers and their child must often decide whether it is better for the child to continue their studies \u2014 for example, by pursuing higher education \u2014 or enter the workforce. These decisions will depend not only on the child\u2019s interests and abilities, but also on the availability of specialized support in post-secondary institutions, such as transition programs (e.g., school-to-work programs), employment support services or special arrangements.<\/li>\n<\/ul>\n<\/li>\n<li>Questions about where the child will live\n<ul>\n<li>As the child approaches adulthood, both they and their parent caregivers must consider different housing options. Some autistic children will remain in the family home, while others will move into independent housing or a supported living environment (e.g., intermediate or family-type resource, assisted living, private housing with services, long-term care facility). However, external housing resources are generally limited due to lack of space, long waiting lists or a mismatch between the needs of autistic individuals and the resources on hand (36, 37, 38).<\/li>\n<\/ul>\n<\/li>\n<li>Questions about legal protection\n<ul>\n<li>When their child reaches the age of majority, the change in the parent\u2019s status from legal guardian raises the issue of guardianship. Parent caregivers sometimes must decide whether their child requires legal protection to manage their personal affairs and property.<\/li>\n<\/ul>\n<\/li>\n<li>Changes in self-perception by parent caregivers\n<ul style=\"margin-bottom: 0; padding-bottom: 0;\">\n<li style=\"margin-bottom: 0; padding-bottom: 0;\">When their child reaches the age of majority, even though their status as parent changes in the eyes of the law, parents (who, up until then, may have seen their caring responsibilities as merely part of parenting) are more likely to identify as \u201ccaregivers\u201d since, under the prevailing social norms, their role as \u201cparent&#8221; is expected to diminish with the onset of adulthood (13).<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/div><\/div><div class=\"et_pb_text_60 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><strong>Repercussions<br \/><\/strong>Decisions related to the transition to adulthood are often marked by stress and uncertainty for parent caregivers, since they directly concern the child\u2019s future and well-being.<\/p>\n<\/div><\/div><div class=\"et_pb_text_61 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>To better plan for their child\u2019s transition to adulthood, parent caregivers need to learn more about autonomy and independent living, employment opportunities and community involvement for people with autism (39).<\/p>\n<\/div><\/div><\/div><\/div><\/div>\n<\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n\n<div class=\"el_modal_popup_18 el_modal_popup et_pb_module\"><div class=\"el_modal_popup_trigger_element_wrapper\"><div class=\"el_modal_popup_wrapper el_modal_popup_center el_modal_popup_close_on_background_click\" data-disable-website-scroll=\"on\" data-id=\"el_modal_popup_module_25\" data-re-render=\"on\" data-autoplay-video=\"off\" data-trigger-type=\"element\" data-trigger-delay=\"3000ms\" data-trigger-element-class=\"the-autism-diagnosis\"><div class=\"el_modal_popup_inner_wrap el_modal_popup_animated et_animated\" data-animation-repeat=\"once\" data-animation-style=\"fade\" data-animation-duration=\"400ms\" data-animation-delay=\"0ms\" data-animation-intensity=\"50%\" data-animation-starting_opacity=\"0\" data-animation-speed_curve=\"ease-in-out\" data-animation-class=\"\"><div class=\"el_modal_popup_body\"><div class=\"et_pb_section_22 et_pb_section et_section_regular et_block_section preset--group--divi-section--divi-transition--default\">\r\n<div class=\"et_pb_row_23 et_pb_row et_block_row preset--group--divi-row--divi-transition--default\">\r\n<div class=\"et_pb_column_23 et_pb_column et_pb_column_4_4 et-last-child et_block_column et_pb_css_mix_blend_mode_passthrough preset--group--divi-column--divi-transition--default\">\r\n<div class=\"et_pb_text_62 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><h3><strong>THE AUTISM DIAGNOSIS<\/strong><\/h3>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_63 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Obtaining a diagnosis of autism is a multi-step process that can be very demanding for parent caregivers (26).<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_64 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><strong>OBTAINING THE DIAGNOSIS<\/strong><\/p>\n<p style=\"text-align: left;\">Diagnosis is crucial, since it is often an essential prerequisite for many service settings before specific support can be provided to the autistic child and their parent caregivers (20).<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_65 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><strong>Repercussions<br \/><\/strong>The process of obtaining a diagnosis can be lengthy and challenging, with a range of repercussions for parent caregivers:<\/p>\n<ul>\n<li>Mental health repercussions: Parent caregivers of children with autism report feeling anxious, isolated, and misunderstood due to the challenges of navigating the complexities of the health and social services system (20).<\/li>\n<li>Social repercussions: Relationships between spouses\/partners, family and friends can be affected when there is disagreement about the child\u2019s difficulties (19).<\/li>\n<li>Financial repercussions: Limited access to services means that the parents of children with autism may turn to costly private services to obtain a diagnosis more quickly (27).<\/li>\n<\/ul>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_66 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><strong>CHILD\u2019S AGE AT TIME OF DIAGNOSIS<\/strong><\/p>\n<p>The age of their child at time of diagnosis will greatly influence the implementation of supports and services and, consequently, the parent caregivers\u2019 trajectory (13).<\/p>\n<p>Parent caregivers whose child is diagnosed at a young age will have greater access to intensive and early support aimed at fostering their child\u2019s autonomy, motor skills, communication skills, attention span and social and play skills. Treatments like early intensive behavioural intervention can benefit parent caregivers by improving their sense of self-efficacy in addition to providing their child with support. However, the level of involvement required from parents in these cases can compound their burden, given the significant amounts of time, money and energy that such treatments require (17, 28, 29, 30).<\/p>\n<p>Conversely, when children are diagnosed later in childhood or during adolescence, support will likewise only arrive later. Here, parent caregivers must palliate the lack of services and fight for access to support and adaptations (17).<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_67 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Several factors may influence the age at which a diagnosis is obtained:<\/p>\n<ul>\n<li>The severity of the child\u2019s behaviours and symptoms\n<ul>\n<li>The higher the degree of severity, the greater the chances of receiving an early diagnosis.<\/li>\n<\/ul>\n<\/li>\n<li>The presence of a current or previous health issue\n<ul>\n<li>When a child is already being monitored for a health problem, their presence in the health and social services system facilitates internal referrals for an assessment and accelerates the diagnostic process (13).<\/li>\n<\/ul>\n<\/li>\n<li>The child\u2019s gender\n<ul>\n<li>Autism is underdiagnosed in girls. As a result, they are more likely to receive a diagnosis later, often only during their teens or even in adulthood (13).<\/li>\n<\/ul>\n<\/li>\n<li>Structural barriers to service access\n<ul>\n<li>Families with a lower socioeconomic status or from ethnic or cultural minorities face a greater number of structural barriers to accessing the services that will result in a diagnosis (19). As a result, children from these families are often diagnosed later.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_68 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p style=\"text-align: center;\"><strong>ACCEPTING THE DIAGNOSIS<\/strong><\/p>\n<p style=\"text-align: left;\">While some parents are relieved to receive a diagnosis that can open the door to support, others can struggle with accepting the implications of autism, experiencing feelings of ambivalence, shock or grief (26, 27).<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_blurb_7 et_pb_blurb et_pb_bg_layout_light et_pb_blurb_position_left et_pb_module et_block_module preset--group--divi-blurb--divi-transition--default preset--module--divi-blurb--default\"><div class=\"et_pb_blurb_content\"><div class=\"et_pb_main_blurb_image\"><span class=\"et_pb_image_wrap\"><span class=\"et-pb-icon\">8<\/span><\/span><\/div><div class=\"et_pb_blurb_container\"><div class=\"et_pb_blurb_description\"><p><span style=\"font-size: 15px;\">It was simply the end of the world. I was in shock. I didn\u2019t understand what was happening.<br \/><strong>Mother of an autistic child (cited in 19)<\/strong><\/span><\/p>\n<\/div><\/div><\/div><\/div>\r\n\r\n<div class=\"et_pb_text_69 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p>Parent caregivers need to feel heard and understood. Presence, willingness to listen and support from family, friends and professionals are crucial at this point in the trajectory to promote acceptance of the diagnosis and the forms of care and treatment that ensue.<\/p>\n<\/div><\/div>\r\n\r\n<div class=\"et_pb_text_70 et_pb_text et_pb_bg_layout_light et_pb_module et_block_module preset--group--divi-text--divi-transition--default\"><div class=\"et_pb_text_inner\"><p><strong>Repercussions<br \/><\/strong>The acceptance of the diagnosis when it is delivered as well as throughout the trajectory plays a significant role in the parents\u2019 quality of life. Accepting the diagnosis allows parents to focus on solutions and strategies, helping them to adapt to their child\u2019s situation rather than continually struggle with the reality of the diagnosis (27, 31).<\/p>\n<\/div><\/div>\r\n<\/div>\r\n<\/div>\r\n<\/div><\/div><span class=\"et-pb-icon el_modal_popup_close el_modal_popup_close_icon\">Q<\/span><\/div><\/div><\/div><\/div>\n<\/div>\n<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":16,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-11041","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Trajectory of Parent Caregivers of Autistic Children - Observatoireprocheaidance<\/title>\n<meta name=\"description\" content=\"The term parent caregivers of autistic children refers to parents whose child has an autism spectrum disorder (ASD), whether diagnosed or not and regardless of the level of severity.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/observatoireprocheaidance.ca\/en\/trajectory-of-parent-caregivers-of-autistic-children\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Trajectory of Parent Caregivers of Autistic Children - 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