«Quand ils avaient 18 mois, j’ai constaté que les jumeaux avaient cessé de se comporter comme normalement les enfants de 18 mois doivent se comporter et du coup tout s’est arrêté…»
Faites une expérience. Tapez sur un moteur de recherche “autisme Cameroun
Marlyse, mère de Pierre-Emmanuel et Aimé-Roger, enfants autistes
”, “enfants autistes Cameroun”, “association enfants autistes Cameroun”, “enfants autistes Yaoundé”. Résultats : des articles qui vous parlent d’initiatives individuelles et étatiques, des pages Facebook d’associations…Vous poussez votre recherche (“autisme Cameroun”) page après page pour essayer de trouver des études développant plus le sujet. A la troisième page vous avez une lueur d’espoir car vous voyez un PDF, vous l’ouvrez et surprise ce n’est pas une étude poussée. Vous repartez à cliquer sur les pages, à la sixième page de votre recherche, re-espoir. Vous ouvrez, et vous voyez neuf pages s’afficher et là vous avez un joli texte de loi sur la “protection et promotion des personnes handicapées”. Vous continuez encore un peu et finalement vous abonnez pour rajouter à votre recherche : PDF. Oups rien ! Ce n’est donc pas là que vous allez trouver de quoi comprendre la réalité des enfants autistes au Cameroun ! Alors, qu’en est-il de la situation de plus de 100 000 enfants autistes dans le pays? Pour vous aider à comprendre le vécu d’un enfant autiste à Yaoundé, à travers l’extrait de l’interview de Marlyse, l’association SOURIRE D’ENFANTS vous livre le témoignage d’une mère de deux enfants autistes.
Sourire d’Enfants (SDE) : Peux-tu me raconter comment tu as découvert que tes jumeaux sont autistes ?
Quand ils avaient 18 mois, j’ai constaté que les jumeaux avaient cessé de se comporter comme normalement les enfants de 18 mois doivent se comporter ; et du coup tout s’est arrêté. J’ai demandé à mon mari qu’on aille faire des examens parce que je trouvais les enfants bizarres. Ils ne parlaient pas, ils ne répondaient pas. Quand on les appelait, ils ne répondaient même pas. On a pensé qu’ils étaient sourds. C’est à ce moment-là qu’on a commencé à aller à l’hôpital pour voir. On nous a demandé de faire des examens des oreilles pour voir s’ils entendaient bien. Les examens ont montrés qu’ils entendaient bien et du coup on m’a envoyé chez le docteur Nkoue qui est orthophoniste à Yaoundé. Elle a sorti le bilan que les enfants avaient un trouble envahissant de comportement et de communication.
SDE : Est-ce que tu as eu des doutes sur le diagnostic que l’on a posé sur les jumeaux ?
Les doutes, non…parce que tout ce que le diagnostic disait, je les voyais faire pareil à la maison.
SDE : Est-ce que tu as pu valider le diagnostic fait ?
Cela fait deux ans que l’on a posé le diagnostic et jusqu’à maintenant je n’ai pas encore validé. J’ai beaucoup d’espoir, je me dis qu’avec le temps qu’ils vont parler.
SDE : Avant l’interview, tu m’exprimais une peur d’aller dans un hôpital à Yaoundé pour faire les examens. Peux-tu m’en dire plus ?
La panique est parce que l’on se lève tôt avec ses enfants pour rencontrer le médecin. Arrivés à l’hôpital, on va rester toute une journée sans toutefois rencontrer les médecins, parce qu’ils ne sont pas là. Tout ça ne donne pas envie de continuer. C’est pour cela que, dans mon cas, je suis retournée chez moi. J’ai mille espoirs…peut-être qu’au fond de moi, je sais qu’ils sont comme ça mais je n’ai pas envie d’accepter.
SDE : Comment en as-tu parlé à ta famille, ton entourage ? Est-ce que tu en as parlé ?
Pas tout de suite parce qu’au moment où j’ai reçu le bilan chez l’orthophoniste, j’ai été abattue. Heureusement que j’ai une grande fille, qui a pris la relève. Je ne voulais même plus aller travailler. Donc cela a commencé chez nous : mon mari, aujourd’hui encore, n’accepte pas que ses enfants soient autistes. Par rapport à mon entourage, ça a été le plus dur. Les voisins n’ont pas froid aux yeux de venir vers vous demander « pourquoi tes enfants ne parlent pas ? Ma fille est de loin leur petite sœur mais elle parle. Pourquoi tes enfants ne parlent pas ?». Ça a été très dur mais à un moment donné j’ai compris qu’il fallait leur dire que chaque enfant va à son rythme et qu’il faut l’accepter tel qu’il est. Par rapport à ma famille, tout le monde me donne de l’espoir. C’est vrai que quand quelqu’un vient me parler, il me regarde avec un air qui fait pitié. Je comprends. Il ne va pas forcement me dire que mes enfants sont autistes, mais il me dit de ne pas perdre espoir, que ça va aller. Au fond de moi, je vois bien que la personne est inquiète pour moi.
SDE : Est-ce que c’est pour te donner de l’espoir, pour dire qu’ils vont guérir, sachant que ce n’est pas une maladie ?
C’est pour me dire « Marlyse, tiens bon, sois forte, parce que tu as du boulot ! ».
SDE : Quelles sont les difficultés des garçons qui ont eu 4 ans début septembre?
C’est surtout dans mon quartier. Avant, je ne les laissais pas jouer avec les autres enfants parce que ça ne se passait pas bien. Maintenant je vais avec eux. Les autres enfants ne comprennent pas pourquoi ils ne veulent pas jouer avec eux ; pourquoi ils les repoussent. Par ailleurs, les jumeaux ne jouent que très rarement ensemble. Ils ont aussi des difficultés de langage. Ils disent des mots tels que le prénom de leur sœur, maman, papa mais ce n’est pas tout le temps. Marc-Emmanuel a un langage que l’on ne comprend pas.
« J’ai mille espoirs…peut-être qu’au fond de moi, je sais qu’ils sont comme ça mais je n’ai pas envie d’accepter».
SDE : Au niveau du Cameroun, l’autisme peut être associé à la sorcellerie, est-ce que tu as été touchée par cela?
Bien sûr. Quand on est dépassé, on est prêt à tout. Je suis moi-même allée voir quelqu’un. J’ai essayé aussi cette solution avant de comprendre qu’il faut accepter la situation. J’ai grandi au village et c’est maintenant que je me rends compte ; que les enfants qu’on venait laisser au village étaient autistes alors qu’on disait qu’ils étaient sorciers.
«Au Cameroun, j’aimerai que l’on porte plus d’attention à ces enfants. Il faut une prise en charge! Je trouve qu’il n’y a pas une bonne place pour eux».
Lire l’intégralité de l’interview (PDF) Ecouter extrait de l’interview (YouTube)
L’autisme en quelques mots…
Selon l’Organisation Mondiale de la Santé « Les troubles du spectre autistique regroupent un ensemble d’affections caractérisées par un certain degré d’altération du comportement social, de la communication et du langage, et par la modicité des centres d’intérêts et des activités, qui sont spécifiques à la personne et répétitifs. Ils apparaissent dans l’enfance et ont tendance à persister à l’adolescence et à l’âge adulte. Dans la plupart des cas, l’affection se manifeste au cours des 5 premières années de l’enfant. Les personnes atteintes de troubles du spectre autistique présentent souvent des comorbidités, parmi lesquelles : épilepsie, dépression, anxiété, trouble déficitaire de l’attention avec hyperactivité. Le niveau de fonctionnement intellectuel est extrêmement variable et peut aller de la déficience profonde à des capacités cognitives supérieures.»
Les enfants autistes peuvent apprendre mais le cadre d’enseignement doit-être structuré. L’accompagnement des parents dans l’apprentissage de méthodes d’accompagnement, de suivi est essentiel pour le développement des enfants. Aujourd’hui, des formations spécifiques forment dans le monde entier des éducateurs spécialisés pour la prise en charge des enfants, adolescents et adultes autistes. Au Cameroun, cette formation est balbutiante. La formation d’éducateurs spécialisés est pour ainsi dire méconnue dans le pays. La première école a ouvert ses portes il y a 2 ans avec un coût de formation très élevé et on peut imaginer que les candidats ne se bousculent pas pour les inscriptions.
Des méthodes d’apprentissage se sont développées au cours de ces vingt dernières années. On citera parmi elles, les méthodes ABA (Analyse Appliquée du comportement), 3i (Intensive, Individuelle et Interactive) et PECS (Picture Exchange Communication System). Ces méthodes ont pour dénominateurs communs l’apprentissage par le jeu et la communication avec l’enfant et la famille. Elles requièrent par ailleurs un investissement important auprès de l’enfant. Ce travail est appuyé par le suivi d’un orthophoniste or, au Cameroun, on compterait moins de 10 orthophonistes dans tout le pays.
Si, d’après les témoignages et les recherches, la prise en charge de l’autiste est quasi inexistante à Yaoundé, nous pouvons aisément imaginer la situation des enfants autistes dans les zones semi-urbaines et rurales dans un pays où l’autisme est méconnu par la population et assimilé à de la sorcellerie !
Article rédigé par Sourire d’Enfants – Yaoundé, Cameroun, Novembre 2017
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Nous vous annonçons la parution du livre L’ESTIME DE SOI ET L’AUTISTE par Brigitte HARRISSON et Lise ST-CHARLES aux éditions Trécarré, Montréal, Québec. Il sera en librairie à partir du 27 mars prochain.
http://www.editions-trecarre.com/estime-soi-autiste/brigitte-harrisson/livre/9782895687627
Merci de faire circuler
Bonne lecture
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Nous informons toutes les personnes qui ont des proches vivant avec autisme au Cameroun que l’association Home care Foundation est en voix de création d’un foyer d’accueil médicalisé pour ces personnes et que l’association accompagne les familles dans la prise en charge de nos amis vivant avec autisme.
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