Accès des personnes autistes aux soins de santé et aux services sociaux liés à la COVID-19 : revue des politiques européennes

Titre original en anglais : COVID-19 health and social care access for autistic people: European policy review

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Oakley, B. F., Tillmann, J., Ruigrok, A., Baranger, A., Takow, C., Charman, T., Jones, E. J., Cusack, J., Doherty, M., Violland, P., Wroczyńska, A., Simonoff, E., Buitelaar, J. K., Gallagher, L., & Murphy, D. (2021). COVID-19 health and social care access for autistic people: European policy review. BMJ Open, 11(6), e045341. https://doi.org/10.1136/bmjopen-2020-045341

Date de publication: 17/05/2021 Ajout dans AutiHub: 05/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
15
Auteur·ices de la publication identifié·es comme autistes
2 / 15 (13,3 %)
  1. Bethany F. Oakley
  2. Julian Tillmann
  3. Amber Ruigrok
  4. Aurélie Baranger
  5. Christian Takow
  1. Tony Charman
  2. Emily J.H. Jones
  3. James Cusack *
  4. Mary Doherty *
  5. Pierre Violland
  1. Agnieszka Wroczyńska
  2. Emily Simonoff
  3. Jan K. Buitelaar
  4. Louise Gallagher
  5. Declan Murphy

Résumé

CONTEXTE : La pandémie mondiale de COVID-19 a eu un impact sans précédent sur les systèmes européens de soins de santé et de services sociaux, les demandes en matière de dépistage, de capacités hospitalières et de soins intensifs dépassant les ressources disponibles dans de nombreuses régions. Cela a suscité des inquiétudes selon lesquelles certains groupes vulnérables, y compris les personnes autistes, pourraient être exclus des services. MÉTHODES : Nous avons examiné les politiques de 15 États membres européens, publiées entre mars et juillet 2020, concernant (1) l'accès aux tests de dépistage de la COVID-19 ; (2) les dispositions relatives au traitement, à l'hospitalisation et aux unités de soins intensifs (USI) ; et (3) les modifications des soins de santé et services sociaux habituels. Parallèlement, nous avons analysé des données d'enquête sur les expériences vécues de 1 301 personnes autistes et aidants. RÉSULTATS : Les personnes autistes ont rencontré des obstacles importants lors de l'accès aux services liés à la COVID-19. Premièrement, malgré un risque accru de maladie grave dû à des problèmes de santé concomitants, l'accessibilité du dépistage de la COVID-19 était insuffisante. Deuxièmement, de nombreux services ambulatoires et hospitaliers de traitement de la COVID-19 ont été signalés comme étant inaccessibles, principalement en raison de différences individuelles dans les besoins de communication. Troisièmement, les protocoles de triage en USI dans de nombreux pays européens ont entraîné, directement ou indirectement, une exclusion discriminatoire des traitements vitaux. Enfin, les interruptions des soins de santé et services sociaux habituels ont laissé plus de 70 % des personnes autistes sans soutien au quotidien. CONCLUSIONS : La pandémie de COVID-19 a davantage exacerbé les inégalités existantes en matière de soins de santé pour les personnes autistes, contribuant probablement à des augmentations disproportionnées de la morbidité et de la mortalité, des difficultés de santé mentale et comportementales, ainsi qu'à une réduction de la qualité de vie. Il existe un besoin urgent de mettre à jour les politiques et lignes directrices relatives à l'accessibilité des services liés à la COVID-19 afin de prévenir l'exclusion généralisée des personnes autistes des services, ce qui constitue une violation du droit international des droits de l'homme.

BACKGROUND: The global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some vulnerable groups, including autistic people, may be excluded from services. METHODS: We reviewed policies from 15 European member states, published in March-July 2020, pertaining to (1) access to COVID-19 tests; (2) provisions for treatment, hospitalisation and intensive care units (ICUs); and (3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1301 autistic people and caregivers. RESULTS: Autistic people experienced significant barriers when accessing COVID-19 services. First, despite being at elevated risk of severe illness due to co-occurring health conditions, there was a lack of accessibility of COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible, predominantly resulting from individual differences in communication needs. Third, ICU triage protocols in many European countries (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Finally, interruptions to standard health and social care left over 70% of autistic people without everyday support. CONCLUSIONS: The COVID-19 pandemic has further exacerbated existing healthcare inequalities for autistic people, probably contributing to disproportionate increases in morbidity and mortality, mental health and behavioural difficulties, and reduced quality of life. An urgent need exists for policies and guidelines on accessibility of COVID-19 services to be updated to prevent the widespread exclusion of autistic people from services, which represents a violation of international human rights law.

Bibliographie citée par cette référence

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Vue d’ensemble de l’inclusion dans la bibliographie

Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.

Références citées
123
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
3 / 123 (2,4 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
10 / 263 (3,8 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 10 / 72 (13,9 %). Auteurices cité·es distinct·es identifié·es comme autistes : 9 / 243 (3,7 %).
Occurrences citées rattachées à la base AutiHub
72 / 263 (27,4 %)
Auteurices cité·es distinct·es rattaché·es : 60 / 243 (24,7 %)
Occurrences rattachées, non identifiées comme autistes
62 / 72 (86,1 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 62 / 263 (23,6 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 51 / 60 (85,0 %).
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