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Master Reference Master Les troubles du spectre de l'autisme : troubles de genre ? l'autisme comme défi à la binarité des genres ISEPPI, Clara Abstract Historiquement considéré comme un trouble majoritairement masculin, l'autisme touche néanmoins une fraction non négligeable de filles et de femmes. Ce constat a emmené des chercheurs de divers domaines scientifiques, dont notamment la psychiatrie ou la neuroscience, à étudier les caractéristiques et les particularités des femmes atteintes de troubles du spectre de l'autisme. Ce mémoire a pour objet l'autisme à travers le prisme du genre. Une analyse d'un corpus d'articles biomédicaux de ces dix dernières années sur la question de l'autisme et les différences entre les sexes, conjuguée à une méthodologie inspirée de la critique féministe des sciences a ainsi permis de mettre en avant l'état des recherches sur le genre et l'autisme. De plus, cette analyse met en lumière les négociations qui ont lieux au sein de ces disciplines quand les notions de sexe et/ou de genre sont chamboulées. Effectivement, les théories genrées majeures autour de l'autisme permettent de mettre en avant un certain trouble de genre par le défi que semblent poser les individus autistes au dogme de la binarité des genres. [...] Reference ISEPPI, Clara. Les troubles du spectre de l'autisme : troubles de genre ? l'autisme comme défi à la binarité des genres. Master : Univ. Genève, 2020 Available at: http://archive-ouverte.unige.ch/unige:145062 Disclaimer: layout of this document may differ from the published version. 1 / 1 Université de Genève Faculté des sciences de la société Master en Études genre Les troubles du spectre de l’autisme : troubles de genre ? L’autisme comme défi à la binarité des genres Clara Iseppi Août-septembre 2020 Sous la direction de Prof. Delphine Gardey Mémoire de maîtrise en études genre Clara Iseppi Remerciements En premier lieu, je tiens à remercier Delphine Gardey pour avoir accepté de m’encadrer dans cette étude, ainsi que pour son aide et ses encouragements pendant la rédaction de ce mémoire. Merci à Lionel pour son soutien pendant l’écriture de ce travail. Enfin, merci à ma mère pour sa patience et son aide. 2 Mémoire de maîtrise en études genre Clara Iseppi Liste des abréviations ADI-R : Autism diagnostic interview ADOS: Autism diagnostic observation scale APA : American Psychiatric Association ASD : Autism spectrum disorders ASSQ : Autism spectrum screening questionnaire CARS: Childhood autism rating scale CFTMEA-R : Classification française des troubles mentaux de l’enfant et de l’adolescent CHAT/M-CHAT : Modified checklist for autism in toddlers CIM : Classification Internationale des Maladies Mentales DSM : Diagnostic and Statistical Manual of Mental Disorders IRM: Imagerie par résonnance magnétique NCBI : National Center for Biotechnology Information OMS : Organisation mondiale de la santé SCQ : Social communication questionnaire TD : Typically developing TED : Troubles envahissants du développement TED-NOS : Troubles envahissants du développement non spécifiés TSA : Trouble du Spectre de l’Autisme 3 Mémoire de maîtrise en études genre Clara Iseppi Résumé Historiquement considéré comme un trouble majoritairement masculin, l’autisme touche néanmoins une fraction non négligeable de filles et de femmes. Ce constat a emmené des chercheurs de divers domaines scientifiques, dont notamment la psychiatrie ou la neuroscience, à étudier les caractéristiques et les particularités des femmes atteintes de troubles du spectre de l’autisme. Ce mémoire a pour objet l’autisme à travers le prisme du genre. Une analyse d’un corpus d’articles biomédicaux de ces dix dernières années sur la question de l’autisme et les différences entre les sexes, conjuguée à une méthodologie inspirée de la critique féministe des sciences a ainsi permis de mettre en avant l’état des recherches sur le genre et l’autisme. De plus, cette analyse met en lumière les négociations qui ont lieux au sein de ces disciplines quand les notions de sexe et/ou de genre sont chamboulées. Effectivement, les théories genrées majeures autour de l’autisme permettent de mettre en avant un certain trouble de genre par le défi que semblent poser les individus autistes au dogme de la binarité des genres. Ces théories représentent ainsi des moyens de remise en ordre du brouillage apparent de genre qui s’observe. 4 Mémoire de maîtrise en études genre Clara Iseppi TABLE DES MATIÈRES LISTE DES ABRÉVIATIONS 3 RÉSUMÉ 4 INTRODUCTION 7 I. TROUBLES DU SPECTRE DE L’AUTISME ET GENRE : QUEL EST LE PROBLÈME ? 8 1.1. Problématique 8 1.1.1. Les troubles du spectre de l’autisme : brève introduction 8 1.1.2. Question de recherche 14 1.1.3. Enjeux et apports de la recherche 16 1.1.4. Plan de travail 18 2.1. Cadre théorique 19 3.1. Sources et méthodologie 21 3.1.1. Provenance et nature des données 21 3.1.2. Méthode de récolte et d’analyse des données 22 3.1.3. Choix des articles 24 II. LES TROUBLES DU SPECTRE DE L’AUTISME : DES TROUBLES AU MASCULIN ? 27 2.1. Les troubles du spectre de l’autisme 27 2.1.1. Bref historique 28 2.1.2. Les changements de 1970-1980 : les classifications internationales 30 2.1.3. L’évaluation diagnostique : principaux outils 34 2.1.4. Principales explications étiologiques 35 2.1.5. TSA et la différence sexe/genre : les grandes lignes 37 Étiologie 38 Phénotype féminin unique 39 Influences socio-culturelles 39 2.2. Présentation du corpus et analyse 40 2.3. Les théorisations genrées des TSA 45 2.3.1. Le phénotype autistique féminin 45 Tableau clinique différent 45 Différences dans les symptômes cardinaux 48 2.3.2. La théorie du cerveau masculin extrême 50 2.3.3. La théorie de l’incohérence de genre 53 2.3.4. Génétique 55 III. LES TROUBLES DU SPECTRE DE L’AUTISME : DES « TROUBLES DE GENRE » ? 57 5 Mémoire de maîtrise en études genre Clara Iseppi 3.1. La critique féministe des sciences : outils pour analyser le cas de l’autisme 57 3.1.1. La recherche des différences entre les sexes 58 3.1.2. Le cadre binaire des genres 59 3.1.3. Les notions de sexe et de genre : trouble dans les définitions 61 3.1.4. « L’individu autiste » : création d’un corps intelligible 64 3.2. Le cerveau comme site de la différence des sexes : les apports des Critical neurosciences et l’application aux troubles du spectre de l’autisme 65 3.2.1. Le dimorphisme sexuel au niveau du cerveau : définitions et théories 65 Brain organization theory 67 La latéralisation cérébrale 69 La connexion interhémisphérique 70 3.2.2. Les Critical neurosciences : outils et concepts 71 Méthodes de comparaison et surestimation des différences 73 La vision essentialiste des différences entre les sexes 74 3.2.3. La primauté de la classification binaire du masculin et du féminin 76 3.3. « Trouble dans le genre » : l’autisme comme défi au paradigme de la binarité des genres 78 3.3.1. Les apports des théories féministes queer 78 3.3.2. Le sexe comme construction : illustration à travers le cas de l’autisme 79 3.3.3. Les troubles du spectre de l’autisme : défi à l’ordre binaire des genres ? 81 CONCLUSIONS 87 SOURCES 90 Ressources en ligne 95 Corpus d’analyse 96 6 Mémoire de maîtrise en études genre Clara Iseppi Introduction La revue scientifique spécialisée Autism publia en 2017 un numéro spécial 1 sur l’autisme au féminin, s’inscrivant ainsi dans l’intérêt grandissant de la communauté scientifique pour la présentation des troubles autistiques chez les filles et les femmes. Les troubles du spectre de l’autisme, historiquement définis comme des troubles affectant de surcroît les hommes, sont de plus en plus acceptés comme pouvant aussi toucher les femmes. Cependant, l’image d’un trouble masculin prévaut encore dans une majorité de travaux scientifiques en la matière, et la présentation féminine est considérée comme une anormalité du tableau clinique classique de l’autisme. Les outils et les échelles d’évaluation diagnostiques se fondent d’ailleurs quasi- exclusivement sur cette présentation masculine des symptômes. Or la prévalence féminine de l’autisme, bien que faible, n’est pas nulle, ainsi comment expliquer ce phénomène ? Quelles causes biologiques, génétiques ou autres peuvent apporter des éclaircissements sur comment des femmes puissent être atteintes d’un trouble masculin ? Ces questionnements ont été le commencement d’une analyse plus approfondie des recherches autour de la prévalence biaisée de l’autisme, notamment telle qu’elle est menée dans le cadre des neurosciences et de la psychiatrie. Ces problématiques m’ont ainsi emmener à me poser des questions plus larges sur les notions de sexe et de genre telles qu’elles sont pensées et travaillées dans ces disciplines scientifiques. Une étude détaillé d’un corpus précis traitant des questions de sexe et de genre dans le cas de l’autisme m’ont permis de mettre en avant les défis qui émergent quand on fait face à un trouble qui semble toucher un sexe plus que l’autre. Les préjugés et les stéréotypes de genre s’insinuent dans les hypothèses mêmes des chercheurs, et des certitudes semblant aller de soi paraissent ébranlées. Des différences strictes entre les sexes sont posées comme préambule dans la majorité des recherches traitant de la question de la prévalence inégale entre hommes et femmes dans l’autisme. Or ceci, dans le cadre d’une approche féministe qu’est la mienne, appelle à se poser « toutes sortes de questions dérangeantes » (Butler, 2006 : p.217) sur ce que sont ces différences, mais aussi autour des notions de sexe ou de genre. Car loin d’être anodines, les caractérisations faites par les disciplines scientifiques sur les questions de sexe, de genre et des différences entre hommes et femmes ont des effets tangibles sur les objets qu’ils étudient.
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