{"id":990,"date":"2025-05-28T18:11:15","date_gmt":"2025-05-28T18:11:15","guid":{"rendered":"https:\/\/autismstories.eu\/?post_type=jetpack-portfolio&#038;p=990"},"modified":"2025-05-28T18:55:52","modified_gmt":"2025-05-28T18:55:52","slug":"alysa","status":"publish","type":"jetpack-portfolio","link":"https:\/\/autismstories.eu\/fr\/portfolio\/alysa\/","title":{"rendered":"Alysa"},"content":{"rendered":"<div class=\"wp-block-jetpack-slideshow aligncenter\" data-effect=\"slide\"><div class=\"wp-block-jetpack-slideshow_container swiper-container\"><ul class=\"wp-block-jetpack-slideshow_swiper-wrapper swiper-wrapper\"><li class=\"wp-block-jetpack-slideshow_slide swiper-slide\"><figure><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" width=\"764\" height=\"510\" alt=\"\" class=\"wp-block-jetpack-slideshow_image wp-image-1015\" data-id=\"1015\" src=\"https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC04287.jpg?resize=764%2C510&#038;ssl=1\" srcset=\"https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC04287.jpg?w=2048&amp;ssl=1 2048w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC04287.jpg?resize=300%2C200&amp;ssl=1 300w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC04287.jpg?resize=1024%2C683&amp;ssl=1 1024w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC04287.jpg?resize=768%2C512&amp;ssl=1 768w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC04287.jpg?resize=1536%2C1025&amp;ssl=1 1536w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC04287.jpg?resize=18%2C12&amp;ssl=1 18w\" sizes=\"(max-width: 764px) 100vw, 764px\" \/><figcaption class=\"wp-block-jetpack-slideshow_caption gallery-caption\">Alysa travaille sur l'un de ses puzzles avanc\u00e9s<\/figcaption><\/figure><\/li><li class=\"wp-block-jetpack-slideshow_slide swiper-slide\"><figure><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" width=\"764\" height=\"510\" alt=\"\" class=\"wp-block-jetpack-slideshow_image wp-image-1017\" data-id=\"1017\" src=\"https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC06715.jpg?resize=764%2C510&#038;ssl=1\" srcset=\"https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC06715.jpg?w=2048&amp;ssl=1 2048w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC06715.jpg?resize=300%2C200&amp;ssl=1 300w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC06715.jpg?resize=1024%2C683&amp;ssl=1 1024w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC06715.jpg?resize=768%2C512&amp;ssl=1 768w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC06715.jpg?resize=1536%2C1025&amp;ssl=1 1536w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC06715.jpg?resize=18%2C12&amp;ssl=1 18w\" sizes=\"(max-width: 764px) 100vw, 764px\" \/><figcaption class=\"wp-block-jetpack-slideshow_caption gallery-caption\">Alysa lors d'une exposition de week-end. Le tableau du flamant rose est le sien.<\/figcaption><\/figure><\/li><li class=\"wp-block-jetpack-slideshow_slide swiper-slide\"><figure><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" width=\"764\" height=\"510\" alt=\"\" class=\"wp-block-jetpack-slideshow_image wp-image-1016\" data-id=\"1016\" src=\"https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08068.jpg?resize=764%2C510&#038;ssl=1\" srcset=\"https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08068.jpg?w=2048&amp;ssl=1 2048w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08068.jpg?resize=300%2C200&amp;ssl=1 300w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08068.jpg?resize=1024%2C683&amp;ssl=1 1024w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08068.jpg?resize=768%2C512&amp;ssl=1 768w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08068.jpg?resize=1536%2C1025&amp;ssl=1 1536w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08068.jpg?resize=18%2C12&amp;ssl=1 18w\" sizes=\"(max-width: 764px) 100vw, 764px\" \/><figcaption class=\"wp-block-jetpack-slideshow_caption gallery-caption\">Alysa me montre ses peintures \u00e0 l'atelier d'art de son centre de jour<\/figcaption><\/figure><\/li><li class=\"wp-block-jetpack-slideshow_slide swiper-slide\"><figure><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" width=\"764\" height=\"510\" alt=\"\" class=\"wp-block-jetpack-slideshow_image wp-image-1019\" data-id=\"1019\" src=\"https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08690.jpg?resize=764%2C510&#038;ssl=1\" srcset=\"https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08690.jpg?w=2048&amp;ssl=1 2048w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08690.jpg?resize=300%2C200&amp;ssl=1 300w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08690.jpg?resize=1024%2C683&amp;ssl=1 1024w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08690.jpg?resize=768%2C512&amp;ssl=1 768w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08690.jpg?resize=1536%2C1025&amp;ssl=1 1536w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/04\/DSC08690.jpg?resize=18%2C12&amp;ssl=1 18w\" sizes=\"(max-width: 764px) 100vw, 764px\" \/><figcaption class=\"wp-block-jetpack-slideshow_caption gallery-caption\">C\u00e9l\u00e9bration au centre r\u00e9sidentiel<\/figcaption><\/figure><\/li><li class=\"wp-block-jetpack-slideshow_slide swiper-slide\"><figure><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" width=\"764\" height=\"510\" alt=\"\" class=\"wp-block-jetpack-slideshow_image wp-image-1048\" data-id=\"1048\" src=\"https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/05\/DSC08145.jpg?resize=764%2C510&#038;ssl=1\" srcset=\"https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/05\/DSC08145.jpg?w=2048&amp;ssl=1 2048w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/05\/DSC08145.jpg?resize=300%2C200&amp;ssl=1 300w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/05\/DSC08145.jpg?resize=1024%2C683&amp;ssl=1 1024w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/05\/DSC08145.jpg?resize=768%2C512&amp;ssl=1 768w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/05\/DSC08145.jpg?resize=1536%2C1025&amp;ssl=1 1536w, https:\/\/i0.wp.com\/autismstories.eu\/wp-content\/uploads\/2025\/05\/DSC08145.jpg?resize=18%2C12&amp;ssl=1 18w\" sizes=\"(max-width: 764px) 100vw, 764px\" \/><figcaption class=\"wp-block-jetpack-slideshow_caption gallery-caption\">Alysa pendant un cours de math\u00e9matiques<\/figcaption><\/figure><\/li><\/ul><a class=\"wp-block-jetpack-slideshow_button-prev swiper-button-prev swiper-button-white\" role=\"button\"><\/a><a class=\"wp-block-jetpack-slideshow_button-next swiper-button-next swiper-button-white\" role=\"button\"><\/a><a aria-label=\"Suspendre le diaporama\" class=\"wp-block-jetpack-slideshow_button-pause\" role=\"button\"><\/a><div class=\"wp-block-jetpack-slideshow_pagination swiper-pagination swiper-pagination-white\"><\/div><\/div><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">C'est un dimanche ensoleill\u00e9 et calme du d\u00e9but du printemps. Je suis venu rendre visite \u00e0 Alysa chez ses parents, o\u00f9 elle passe ses week-ends. Le reste de son temps se partage entre un centre de jour et un centre d'h\u00e9bergement pour personnes autistes.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Tandis que je parle \u00e0 sa m\u00e8re, elle reste concentr\u00e9e, reconstituant un puzzle commenc\u00e9 vendredi soir. Elle intervient de temps en temps lorsque nous nous adressons directement \u00e0 elle. Sa m\u00e8re \u00e9voque son amour pour la musique \u2013 des artistes fran\u00e7ais comme Orelsan et Grand Corps Malade (qu'elle a rencontr\u00e9s !), mais aussi les Beatles. Alysa a une oreille incroyable ; elle reconna\u00eet instantan\u00e9ment la voix d'un chanteur, m\u00eame d'une chanson qu'elle n'a jamais entendue, d\u00e9fiant quiconque doute de son audition.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Alysa a 36 ans. Son parcours a commenc\u00e9 dans l'incertitude presque d\u00e8s le premier jour. Sa m\u00e8re se souvient avoir ressenti quelque chose de diff\u00e9rent alors qu'Alysa n'avait que trois mois : un regard qui ne correspondait pas tout \u00e0 fait au sien, une fascination pour les lumi\u00e8res. Cette intuition a pr\u00e9c\u00e9d\u00e9 une s\u00e9rie de crises de sant\u00e9 pr\u00e9coces\u00a0: des arr\u00eats respiratoires terrifiants n\u00e9cessitant un moniteur directement \u00e0 la maternit\u00e9, une maladie grave non diagnostiqu\u00e9e l\u2019envoyant en soins intensifs pendant des semaines, puis des convulsions atroces, soudaines et r\u00e9p\u00e9t\u00e9es quotidiennement, finalement diagnostiqu\u00e9es comme \u00e9pilepsie.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Le pronostic initial des m\u00e9decins \u00e9tait sombre\u00a0: elle risquait de ne jamais marcher, voir ou r\u00e9agir. Une \u00ab\u00a0petite plante\u00a0\u00bb, sugg\u00e9raient-ils. Le manque d'oxyg\u00e8ne lors d'un accouchement difficile, compliqu\u00e9 par une gr\u00e8ve des infirmi\u00e8res, a peut-\u00eatre contribu\u00e9 \u00e0 des probl\u00e8mes cognitifs en plus de son autisme, comme le refl\u00e8te sa m\u00e8re.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Mais Alysa n\u2019est pas une \u00ab\u00a0petite plante\u00a0\u00bb. Elle a suivi un chemin \u00e0 travers des syst\u00e8mes de soutien sp\u00e9cialis\u00e9s\u00a0: une pionni\u00e8re en tant que premier b\u00e9b\u00e9 handicap\u00e9 dans sa cr\u00e8che wallonne, puis des \u00e9coles pour malentendants (une erreur d\u2019orientation pr\u00e9coce fr\u00e9quente chez les enfants non verbaux), et enfin un programme (Service universitaire sp\u00e9cialis\u00e9 pour les personnes autistes) visant \u00e0 favoriser l\u2019autonomie. Pourtant, comme le souligne sa m\u00e8re, les connaissances th\u00e9oriques ne se traduisent pas toujours par une s\u00e9curit\u00e9 pratique. Alysa comprend la r\u00e8gle \u00ab\u00a0regarde \u00e0 gauche, regarde \u00e0 droite\u00a0\u00bb pour traverser la rue, mais ne l'appliquerait pas forc\u00e9ment de mani\u00e8re fiable, manquant du sens inn\u00e9 de la prudence que la plupart tiennent pour acquis. De plus, sa confiance inn\u00e9e la rendrait pr\u00eate \u00e0 accepter un inconnu qui lui adresse la parole dans la rue.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Actuellement, Alysa passe ses jours de semaine dans un centre d'h\u00e9bergement et rentre chez elle le week-end. C'est un endroit o\u00f9 elle s'\u00e9panouit socialement, restant rarement seule dans sa chambre, pr\u00e9f\u00e9rant la compagnie des autres dans les espaces communs. Le mari d'Alysa parle du directeur actuel, Vincent, avec un immense soulagement et une immense reconnaissance\u00a0: son approche pratique, son empathie et son accessibilit\u00e9 ont favoris\u00e9 un environnement positif. Elle se souvient d'un jour o\u00f9 il est all\u00e9 chercher des r\u00e9sidents bloqu\u00e9s apr\u00e8s une panne nocturne.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Les transports sont g\u00e9r\u00e9s par un service de taxi social \u2013 une n\u00e9cessit\u00e9, mais aussi un rappel des m\u00e9andres logistiques que les familles doivent affronter. La bureaucratie est un autre obstacle constant. Sa m\u00e8re raconte le parcours du combattant des certificats m\u00e9dicaux pour obtenir des allocations de soutien, m\u00eame pour une maladie comme l'autisme, qui est permanente. Les parents comme elle sont constamment confront\u00e9s \u00e0 des syst\u00e8mes rigides, d\u00e9connect\u00e9s des preuves m\u00e9dicales et du v\u00e9cu des personnes handicap\u00e9es et de leurs aidants.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Au-del\u00e0 de son intuition musicale, Alysa excelle v\u00e9ritablement dans son art. Depuis ses 18 ans, alors qu'elle fr\u00e9quente un centre de jour, elle dessine et peint. C'est plus qu'un passe-temps\u00a0; c'est comme un langage. En observant ses \u0153uvres vibrantes \u2013 les pi\u00e8ces \u00e9puis\u00e9es repr\u00e9sentant des animaux color\u00e9s, des fleurs s'\u00e9panouissant sur des bateaux, et m\u00eame un Sisyphe r\u00e9invent\u00e9 \u2013 on per\u00e7oit une sensibilit\u00e9 particuli\u00e8re \u00e0 la couleur et \u00e0 la texture. Les sujets de ses peintures (flamants roses, chevaux, lapins, cr\u00e9atures humano\u00efdes) sont tous compos\u00e9s de taches de couleur, comme si quelqu'un les avait assembl\u00e9es \u00e0 partir de morceaux \u00e9clatants.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Peut-\u00eatre, comme le dit sa m\u00e8re, est-ce une fa\u00e7on de trouver le calme et de \"coucher ses \u00e9motions sur le papier\". Curieusement, si elle s'\u00e9panouit en peignant avec d'autres personnes lors d'un cours ou d'un atelier (elle a m\u00eame remport\u00e9 un prix !), peindre seule \u00e0 la maison ne l'int\u00e9resse pas. Elle a besoin de cet espace partag\u00e9 pour cr\u00e9er.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Je regarde Alysa de l'autre c\u00f4t\u00e9 de la table, chez ses parents, tandis qu'elle travaille lentement sur son puzzle avanc\u00e9. Sa m\u00e8re me montre un d\u00e9barras rempli de puzzles. Un soleil d'apr\u00e8s-midi inattendu baigne le tout d'une lumi\u00e8re chaude. Alysa reste concentr\u00e9e sur les petites pi\u00e8ces du puzzle tandis que je discute avec sa m\u00e8re du handicap, de la croissance, de la parentalit\u00e9 et du vieillissement.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Pour les parents d'enfants handicap\u00e9s, en perte d'autonomie, ce qui adviendra de leur enfant apr\u00e8s le d\u00e9c\u00e8s de leurs parents est source de cauchemars et de questionnements d\u00e9chirants. Mais la voix de sa m\u00e8re reste calme. \u00ab\u00a0Alysa parle de la mort de temps en temps\u00a0\u00bb, me dit-elle. \u00ab\u00a0Elle me demande si je pleurerai quand elle mourra. Je ne pense pas qu'elle comprenne pleinement le cours du temps et qui est cens\u00e9 mourir en premier.\u00bb<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Lorsque je travaille sur mon projet photo, je garde une certaine distance \u00e9motionnelle avec ce qui se passe. Mon appareil photo agit comme un mur ou un filtre invisible. J'essaie de rester concentr\u00e9e sur la documentation de ce qui est l\u00e0. Je sais qu'\u00e0 un moment donn\u00e9, je ressentirai aussi plus pleinement le poids \u00e9motionnel des choses. Mais parfois, il n'y a pas de filtre et l'impact est imm\u00e9diat. En dessous de moi, la personne qui tient l'appareil photo, c'est moi, le parent d'un enfant autiste. Il y a aussi moi, une personne qui essaie d'accepter son propre vieillissement et la fa\u00e7on dont il modifie sa relation au monde qui m'entoure.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">L'appareil photo que je tiens est une porte ouverte sur le monde, mais aussi un masque que je mets lorsque je sors. Il m'expose et me cache \u00e0 la fois. Mais en ce moment, dans ce salon \u00e9clair\u00e9 par le soleil couchant, je me sens non seulement le parent de mon fils, mais aussi, d'une certaine mani\u00e8re, celui d'Alysa, celui de tous les enfants, quel que soit leur \u00e2ge, qu'ils soient n\u00e9s avec une diff\u00e9rence ou non.<\/p>","protected":false},"excerpt":{"rendered":"<p>It&#8217;s a sunny, quiet Sunday in early spring. I came to visit Alysa at her parents&#8217; place, where she spends her weekends. The rest of her time is shared between a day center and a residential center for persons with autism. As I talk to her mom, she remains focused, piecing together a puzzle she [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":1015,"comment_status":"open","ping_status":"closed","template":"","format":"standard","meta":{"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"tags":[25,8,9,10,11,12],"jetpack-portfolio-type":[],"jetpack-portfolio-tag":[],"class_list":["post-990","jetpack-portfolio","type-jetpack-portfolio","status-publish","format-standard","has-post-thumbnail","hentry","tag-alysa","tag-autism","tag-autism-stories","tag-photo-project","tag-photography","tag-storytelling"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.0 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Alysa - Autism Stories<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/autismstories.eu\/fr\/portfolio\/alysa\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Alysa - Autism Stories\" \/>\n<meta property=\"og:description\" content=\"It&#8217;s a sunny, quiet Sunday in early spring. 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