{"id":666,"date":"2024-02-29T18:45:31","date_gmt":"2024-02-29T18:45:31","guid":{"rendered":"https:\/\/autismstories.eu\/?p=666"},"modified":"2024-09-04T05:46:07","modified_gmt":"2024-09-04T05:46:07","slug":"autism-stories-new-chapter","status":"publish","type":"post","link":"https:\/\/autismstories.eu\/fr\/autism-stories-new-chapter\/","title":{"rendered":"Autism Stories: un nouveau chapitre"},"content":{"rendered":"

Gros poisson, petit poisson<\/h2>\n\n\n\n

Je parle au t\u00e9l\u00e9phone avec Giuliano de temps en temps. Il a 39 ans. Il passe son temps entre le centre r\u00e9sidentiel et le domicile de ses parents, o\u00f9 il vient passer le week-end. Il s'int\u00e9resse \u00e0 l'\u00e9lectronique et \u00e0 la technologie, en particulier aux appareils photo et aux haut-parleurs. Il aime les gros poissons. Il aime faire de longues promenades et demander \u00e0 des inconnus de prendre des photos avec lui. Il porte un pyjama quelques tailles plus petit.<\/p>\n\n\n\n

\"\"
Giuliano avec ses photos bien-aim\u00e9es de gros poissons<\/figcaption><\/figure>\n\n\n\n

Lorsqu'une de ses connaissances est d\u00e9c\u00e9d\u00e9e il y a quelques mois, Giuliano a \u00e9t\u00e9 aux prises avec l'anxi\u00e9t\u00e9 et la tristesse. Il \u00e9tait inconsolable. Presque en deuil. Il m'a dit qu'il pensait \u00e0 la mort d'autres personnes dans sa vie. Il ne parvenait pas \u00e0 trouver la paix. <\/p>\n\n\n\n

Je lui ai dit que \u00e7a ira mieux. Que c\u2019est normal de ressentir tout \u00e7a. <\/p>\n\n\n\n

Lui dire cela semble \u00e0 la fois n\u00e9cessaire et inutile. Je veux l\u2019aider mais je sais que dire aux gens que \u00e7a ira mieux ne les fera pas se sentir mieux. Cependant, avoir quelqu'un \u00e0 qui parler, quelqu'un qui \u00e9coute et se soucie, peut <\/em>les faire se sentir mieux.<\/p>\n\n\n\n

Dans un message qui m\u2019a \u00e9t\u00e9 envoy\u00e9 peu de temps apr\u00e8s, il inclut quelques \u00e9mojis de poisson. Je souris. Je sais que c'\u00e9tait pour lui un signe d'amiti\u00e9 et de proximit\u00e9. Lorsque je l'ai rencontr\u00e9 pour la premi\u00e8re fois et que je me suis assis avec sa m\u00e8re pour discuter, il m'a montr\u00e9 ses photos de requins marteaux, de thons et d'autres gros poissons. Il a dit combien il les aimait et un peu plus tard, il a ajout\u00e9 que sa m\u00e8re est un gros poisson et lui un petit poisson qui nage autour d'elle.<\/p>\n\n\n\n

Imaginer un projet<\/h2>\n\n\n\n

Giuliano fait partie d'un projet de photo documentaire que j'ai d\u00e9marr\u00e9 en janvier 2023. D\u00e8s le d\u00e9but, je l'ai pens\u00e9 comme un projet \u00e0 long terme. Il faut du temps et de l'\u00e9nergie pour aller au-del\u00e0 de gratter la surface, revenir encore et encore vers les participants et essayer de capturer un autre morceau de cet incroyable cal\u00e9idoscope qu'est leur vie, qui est n'importe quelle autre vie en fait.<\/p>\n\n\n\n

Avec la publication du livre photo et l\u2019exposition organis\u00e9e en novembre 2023, c\u2019\u00e9tait comme si un cap avait \u00e9t\u00e9 franchi. C'\u00e9tait comme si quelque chose se terminait et que, quoi qu'il arrive ensuite, cela ne pourrait pas \u00eatre exactement comme avant.<\/p>\n\n\n\n

Pour moi, de nouvelles id\u00e9es de projets photo commencent \u00e0 se d\u00e9velopper bien avant que j\u2019agisse. J'ai r\u00eav\u00e9 d'Autisme Stories au moins un an avant de le commencer. Un nouveau r\u00eave est parfois apparu l'ann\u00e9e derni\u00e8re : un projet sur le vieillissement et la mani\u00e8re dont les gens y font face. J'en ai r\u00eav\u00e9 pendant un moment et c'\u00e9tait relativement tard dans l'ann\u00e9e quand, en discutant avec un ami, j'ai r\u00e9alis\u00e9 que j'aimerais vraiment le relier \u00e0 mes travaux ant\u00e9rieurs sur l'autisme. Et que j'aimerais cette fois me concentrer sur les adultes autistes.<\/p>\n\n\n\n

Changement d\u2019orientation\u00a0: l\u2019autisme et l\u2019\u00e2ge adulte<\/h2>\n\n\n\n

Le peu d\u2019informations sur l\u2019autisme disponibles dans les m\u00e9dias (y compris les r\u00e9seaux sociaux) concernent presque exclusivement les enfants. Il y a bien s\u00fbr de nombreuses bonnes raisons \u00e0 cela. Mais c\u2019est presque comme si ces enfants autistes ne grandissaient jamais. \u00c0 mesure qu\u2019ils approchent de l\u2019\u00e2ge adulte, ils commencent \u00e0 dispara\u00eetre dans le brouillard de l\u2019indiff\u00e9rence. Ils vivent leur vie tranquillement, avec des diff\u00e9rents d\u00e9gr\u00e9es d\u2019autonomie. <\/p>\n\n\n\n

Certains d\u2019entre eux passent la majeure partie de leur temps dans des \u00e9tablissements r\u00e9sidentiels. D'autres vivent avec leurs parents. Certains ont des petits boulots tandis que d\u2019autres ont un emploi stable, mais g\u00e9n\u00e9ralement avec quelques am\u00e9nagements pour le rendre plus adapt\u00e9 \u00e0 l\u2019autisme. Certains ont des relations. Certains ont des enfants.<\/p>\n\n\n\n

Qu'arrive-t-il \u00e0 ces personnes ? Comment nouent-ils et entretiennent-ils des relations ? Comment assument-ils les r\u00f4les sociaux d\u2019amis, de partenaires amoureux, de coll\u00e8gues, de parents ? Avec quoi luttent-ils ? C\u2019est toute une partie de l\u2019humanit\u00e9 qui reste quasiment invisible. Et cela a des implications sur la fa\u00e7on dont le reste de l\u2019humanit\u00e9 traite les adultes autistes, sur les ressources allou\u00e9es pour leur faciliter la vie et sur la facilit\u00e9 avec laquelle il leur est de participer \u00e0 la vie sociale et de trouver un emploi.<\/p>\n\n\n\n

C\u2019est le sujet de la deuxi\u00e8me phase d\u2019Autism Stories. <\/p>","protected":false},"excerpt":{"rendered":"

Big Fish, Small Fish I talk on the phone with Giuliano from time to time. He is 39. He spends his time between the residential center and his parents’ home, where he comes for the weekend. He is into electronics and tech stuff, especially cameras and speakers. He likes big fish. 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