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Un an après le lancement de la stratégie autisme, des députés appellent à sortir les adultes des institutions psychiatriques (Coline Garré, Le Quotidien du Médecin)

La situation des adultes autistes, longtemps négligée, reste source de vive inquiétude, ont alerté les députés Daniel Fasquelle (LR, Pas-de-Calais) et Nathalie Sarles (LREM, Loire), ce 17 juillet, en présentant devant le comité d’évaluation et de contrôle des politiques publiques de l’Assemblée nationale, le suivi de leur mission. En juin 2018soit deux mois après le lancement de la « stratégie nationale pour l’autisme au sein des troubles du neuro-développement », les deux députés avaient présenté 31 mesures

 

Si un tiers a commencé à être mis en œuvre, « il y a très peu d’avancées pour les adultes : nous soulignons la nécessité de transformer en profondeur leur prise en charge », a déclaré Nathalie Sarles, appelant à la « désinstitutionnalisation des personnes qui n’ont rien à faire en institution psychiatrique »« Nous avons besoin d’un choc culturel, par rapport à la façon dont nous voyons le séjour à l’hôpital », a-t-elle poursuivi. La députée propose en particulier de développer des équipes mobiles, qui puissent intervenir sur les lieux de vie des personnes, à leur domicile ou dans la rue.

Le repérage et le diagnostic des adultes sont toujours défaillants. Le Groupement national des centres ressources autisme (GNCRA) doit mener une concertation en vue d’élaborer un référentiel ; « mais cela ne démarrera qu’en 2020 », s’est impatientée Nathalie Sarles. Les plateformes de répit, réclamées par les familles, tardent à se déployer. L’accès au logement et à l’emploi des adultes avec troubles du spectre autistique est semé d’obstacle. Seul point positif, notent les députés : la stratégie autisme prévoit la fongibilité des crédits des agences régionales de santé, ce qui doit permettre « l’évolution du sanitaire vers le médico-social », et 40 millions d’euros pour les soins de réhabilitation psychosociale.

 

Des moyens trop modestes pour la recherche 

Les députés ont déploré la faiblesse des moyens alloués à la recherche dans le champ des troubles du neuro-développement. La stratégie prévoit 14 millions d’euros. « Nous pensons qu’il faut quintupler ces fonds, pour atteindre 70 millions d’euros », considère-t-Daniel Fasquelle. Le député estime que leur proposition d’un institut national dédié aux TND, à l’image de l’INCa, reste d’actualité, même si le Groupement d’intérêt scientifique sur l’autisme et les TND prévu dans la stratégie nationale devrait voir le jour le 1er octobre prochain. « Ses moyens (300 000 euros par an jusqu’en 2022), sont trop modestes », pointe-t-il.

Il a aussi reproché l’absence d’un véritable maillage territorial de centres d’excellence. Seuls trois ont été sélectionnés : InovAND, porté par l’hôpital Robert-Debré (AP-HP), Ceand, par le CHU de Montpellier, et Exac-T, par le CHU de Tours. « Un choix réducteur par rapport à l’excellence de la soixantaine d’équipes travaillant sur l’autisme », a commenté le député.

 

Des bonnes pratiques à traduire sur le terrain  

Au chapitre des avancées, les parlementaires ont salué l’effort réalisé en faveur du dépistage précoce des enfants, avec la mise en place du forfait d’intervention précoce (des bilans réalisés par des psychologues, ergothérapeutes, orthophonistes et psychomotriciens libéraux, remboursés par l’Assurance-maladie – jusqu’à 1 500 euros par an pour un enfant), la sélection des plateformes d’orientation et de diagnostic (14 sont opérationnelles), et la mise à disposition des médecins de première ligne d’une grille de repérage facile d’utilisation.

 

En termes de prise en charge, « les méthodes éducatives et comportementales ont été adoptées, les recommandations de bonnes pratiques de la Haute Autorité de santé (HAS) de 2012 ne sont plus contestées », s’est félicité Daniel Fasquelle. « On est entré dans une deuxième phase, où ces bonnes pratiques doivent être enseignées et appliquées », dit-il. Si la sensibilisation des professionnels aujourd’hui en contact avec les enfants « laisse à désirer », selon ses mots, l’optimisme est permis, avec la réforme des maquettes en médecine, ou encore la création par la HAS d’une commission chargée d’évaluer l’impact de ses recommandations sur le terrain.

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