Accès aux soins de santé et aux services sociaux liés à la COVID-19 pour les personnes autistes et les personnes présentant une déficience intellectuelle : une revue des politiques européennes.

Titre original en anglais : COVID-19 health and social care access for autistic people and individuals with intellectual disability: A 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. (2020). COVID-19 health and social care access for autistic people and individuals with intellectual disability: A European policy review [Preprint]. Center for Open Science. https://doi.org/10.31234/osf.io/n6d3f

Date de publication: 02/10/2020 Ajout dans AutiHub: 05/07/2026 Type: Prépublication 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 santé et de services sociaux, les demandes en matière de dépistage, de capacité hospitalière et de soins intensifs dépassant les ressources disponibles dans de nombreuses régions. Cela a suscité des préoccupations selon lesquelles certains groupes, y compris les personnes autistes/celles présentant une déficience intellectuelle (DI), pourraient être exclus des services. Méthodes : Nous avons examiné les politiques de 15 États membres européens, publiées de mars à juillet 2020, concernant : 1) l'accessibilité du dépistage de la COVID-19 ; 2) les dispositions relatives au traitement, à l'hospitalisation et aux unités de soins intensifs (USI) ; et 3) les changements apportés aux soins de santé et aux services sociaux habituels. Parallèlement, nous avons analysé les données d'enquête sur les expériences vécues de 1 301 personnes autistes et aidants. Résultats : Les personnes autistes/celles présentant une DI ont rencontré des obstacles importants dans l'accès aux services liés à la COVID-19. Premièrement, bien que ces groupes présentent un risque élevé de maladie grave en raison de comorbidités, l'accès au dépistage de la COVID-19 faisait défaut. Deuxièmement, de nombreux services ambulatoires et hospitaliers de traitement de la COVID-19 ont été signalés comme inaccessibles, principalement en raison de différences individuelles dans les besoins de communication. Troisièmement, les protocoles de triage en USI ont entraîné, directement ou indirectement, une exclusion discriminatoire des traitements susceptibles de sauver la vie. Enfin, les interruptions des soins de santé et des services sociaux habituels ont laissé plus de 70 % des personnes autistes sans soutien quotidien. Conclusions : La pandémie de COVID-19 a davantage mis en évidence les inégalités en matière de soins de santé pour les personnes autistes/celles présentant une DI, contribuant probablement à des augmentations disproportionnées de la morbidité et de la mortalité dans ces groupes. Les politiques et lignes directrices actuelles concernant l'accessibilité des services liés à la COVID-19 nécessitent une révision urgente afin de prévenir l'exclusion généralisée des personnes autistes et des personnes présentant une DI 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 groups, including autistic people/ those with intellectual disability (ID), may become excluded from services. Methods: We reviewed policies from 15 European member states, published March-July 2020, pertaining to: 1) accessibility of COVID-19 testing; 2) provisions for treatment, hospitalisation and intensive care units (ICU); and 3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1,301 autistic people and caregivers.Results: Autistic people/ those with ID experienced significant barriers accessing COVID-19 services. First, despite these groups being at elevated risk for severe illness due to co-morbid health conditions, there was a lack of access to 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 (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Last, interruptions to standard health and social care left over 70% of autistic people without everyday support.Conclusions: The COVID-19 pandemic has further emphasised healthcare inequalities for autistic people/ those with ID, likely contributing to disproportionate increases in morbidity and mortality in these groups. Current policies and guidelines regarding the accessibility of COVID-19 services require urgent revision to prevent the widespread exclusion of autistic people and those with ID 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
46
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
3 / 46 (6,5 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
10 / 286 (3,5 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 10 / 65 (15,4 %). Auteurices cité·es distinct·es identifié·es comme autistes : 6 / 265 (2,3 %).
Occurrences citées rattachées à la base AutiHub
65 / 286 (22,7 %)
Auteurices cité·es distinct·es rattaché·es : 50 / 265 (18,9 %)
Occurrences rattachées, non identifiées comme autistes
55 / 65 (84,6 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 55 / 286 (19,2 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 44 / 50 (88,0 %).
  1. Sarah Thomson , Josep Figueras , Tamás Evetovits , Matthew Jowett , Philipa Mladovsky , Anna Maresso et al. (2015). ECONOMIC CRISIS, HEALTH SYSTEMS AND HEALTH IN EUROPE: IMPACT AND IMPLICATIONS FOR POLICY .
    Type: Livre OpenAlex: https://openalex.org/W1481774156
    OpenAlex
  2. K. Pratt , G. Baird , P. Gringras (2012). Ensuring successful admission to hospital for young people with learning difficulties, autism and challenging behaviour: a continuous quality improvement and change management programme . Child: Care, Health and Development, 38(6), 789-797. Wiley.
    Type: Article DOI: 10.1111/j.1365-2214.2011.01335.x OpenAlex: https://openalex.org/W1678287584
    OpenAlex
  3. Lee Daugherty Biddison , Kenneth A. Berkowitz , Brooke Courtney , Col Marla J. De Jong , Asha V. Devereaux , Niranjan Kissoon et al. (2014). Ethical Considerations . Chest, 146(4), e145S-e155S. Elsevier BV.
    Type: Article DOI: 10.1378/chest.14-0742 OpenAlex: https://openalex.org/W1980167019
    OpenAlex
  6. Asha V. Devereaux , Jeffrey R. Dichter , Michael D. Christian , Nancy N. Dubler , Christian E. Sandrock , John L. Hick et al. (2008). Definitive Care for the Critically Ill During a Disaster: A Framework for Allocation of Scarce Resources in Mass Critical Care . Chest, 133(5), 51S-66S. Elsevier BV.
    Type: Article DOI: 10.1378/chest.07-2693 OpenAlex: https://openalex.org/W2102684869
    OpenAlex
  7. Scott D. Tomchek , Winnie Dunn (2007). Sensory Processing in Children With and Without Autism: A Comparative Study Using the Short Sensory Profile . American Journal of Occupational Therapy, 61(2), 190-200. SAGE Publications.
    Type: Article DOI: 10.5014/ajot.61.2.190 OpenAlex: https://openalex.org/W2107555020
    OpenAlex
  8. Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315577517 OpenAlex: https://openalex.org/W2108322879
    OpenAlex
  9. Ariane V. S. Buescher , Zuleyha Cidav , Martín Knapp , David S. Mandell (2014). Costs of Autism Spectrum Disorders in the United Kingdom and the United States . JAMA Pediatrics, 168(8), 721. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapediatrics.2014.210 OpenAlex: https://openalex.org/W2110143479
    OpenAlex
  10. L. Tavernor , E. Barron , Jacqui Rodgers , H. McConachie (2013). Finding out what matters: validity of quality of life measurement in young people with ASD . Child: Care, Health and Development, 39(4), 592-601. Wiley.
    Type: Article DOI: 10.1111/j.1365-2214.2012.01377.x OpenAlex: https://openalex.org/W2119468181
    OpenAlex
  11. Jinkuk Hong , Lauren Bishop-Fitzpatrick , Leann E. Smith , Jan S. Greenberg , Marsha R. Mailick (2016). Factors Associated with Subjective Quality of Life of Adults with Autism Spectrum Disorder: Self-Report Versus Maternal Reports . Journal of Autism and Developmental Disorders, 46(4), 1368-1378. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2678-0 OpenAlex: https://openalex.org/W2203061867
    OpenAlex
  12. Denise DuBois , Stephanie H. Ameis , Meng-Chuan Lai , Manuel F. Casanova , Pushpal Desarkar (2016). Interoception in Autism Spectrum Disorder: A review . International Journal of Developmental Neuroscience, 52(1), 104-111. Wiley.
    Type: Article DOI: 10.1016/j.ijdevneu.2016.05.001 OpenAlex: https://openalex.org/W2415326721
    OpenAlex
  13. Margaret Winzer , Kas Mazurek (2017). The Convention on the Rights of Persons with Disabilities . Dans The Wiley Handbook of Diversity in Special Education (pp. 1-22). Wiley.
    Type: Chapitre de livre DOI: 10.1002/9781118768778.ch1 OpenAlex: https://openalex.org/W2588223304
    OpenAlex
  14. Philippa Moss , Will Mandy , Patricia Howlin (2017). Child and Adult Factors Related to Quality of Life in Adults with Autism . Journal of Autism and Developmental Disorders, 47(6), 1830-1837. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3105-5 OpenAlex: https://openalex.org/W2598640917
    OpenAlex
  15. Mirko Uljarević , Grace T. Baranek , Giacomo Vivanti , Darren Hedley , Kristelle Hudry , Alison E. Lane (2017). Heterogeneity of sensory features in autism spectrum disorder: Challenges and perspectives for future research . Autism Research, 10(5), 703-710. Wiley.
    Type: Article DOI: 10.1002/aur.1747 OpenAlex: https://openalex.org/W2611111199
    OpenAlex
  16. E. Flygare Wallén , G. Ljunggren , A. C. Carlsson , D. Pettersson , P. Wändell (2018). High prevalence of diabetes mellitus, hypertension and obesity among persons with a recorded diagnosis of intellectual disability or autism spectrum disorder . Journal of Intellectual Disability Research, 62(4), 269-280. Wiley.
    Type: Article DOI: 10.1111/jir.12462 OpenAlex: https://openalex.org/W2779075543
    OpenAlex
  17. Rebecca Sutherland , David Trembath , Jacqueline Roberts (2018). Telehealth and autism: A systematic search and review of the literature . International Journal of Speech-Language Pathology, 20(3), 324-336. Informa UK Limited.
    Type: Article DOI: 10.1080/17549507.2018.1465123 OpenAlex: https://openalex.org/W2802741593
    OpenAlex
  18. Tommy MacKay , Martín Knapp , James Boyle , Valentina Iemmi , Michael Connolly , Amritpal Rehill (2018). The Microsegmentation of the Autism Spectrum: Economic and Research Implications for Scotland . Digital Education Resource Archive (University College London). Unpublished.
    Type: Article DOI: 10.13140/rg.2.2.18206.23365 OpenAlex: https://openalex.org/W2888697733
    OpenAlex
  19. Lauren M. Little , Anna Wallisch , Ellen Pope , Winnie Dunn (2018). Acceptability and Cost Comparison of a Telehealth Intervention for Families of Children With Autism . Infants & Young Children, 31(4), 275-286. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/iyc.0000000000000126 OpenAlex: https://openalex.org/W2888944434
    OpenAlex
  20. Emma Kinnaird , Catherine Stewart , Kate Tchanturia (2019). Investigating alexithymia in autism: A systematic review and meta-analysis . European Psychiatry, 55, 80-89. Cambridge University Press (CUP).
    Type: Article DOI: 10.1016/j.eurpsy.2018.09.004 OpenAlex: https://openalex.org/W2899269258
    OpenAlex
  22. Ilhom Akobirshoev , Monika Mitra , Robbie Dembo , Emily Lauer (2020). In-hospital mortality among adults with autism spectrum disorder in the United States: A retrospective analysis of US hospital discharge data . Autism, 24(1), 177-189. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319855795 OpenAlex: https://openalex.org/W2952614592
    OpenAlex
  23. Nice Guideline Updates Team (2017). Autism spectrum disorder in under 19s: recognition, referral and diagnosis .
    Type: Article OpenAlex: https://openalex.org/W2997110381
    OpenAlex
  24. Ezekiel J. Emanuel , Govind Persad , Ross Upshur , Beatriz Thome , Michael Parker , Aaron Glickman et al. (2020). Fair Allocation of Scarce Medical Resources in the Time of Covid-19 . New England Journal of Medicine, 382(21), 2049-2055. Massachusetts Medical Society.
    Type: Article DOI: 10.1056/nejmsb2005114 OpenAlex: https://openalex.org/W3012690896
    OpenAlex
  25. Rachel E Jordan , Peymane Adab , K K Cheng (2020). Covid-19: risk factors for severe disease and death . BMJ, 368, m1198. BMJ.
    Type: Article DOI: 10.1136/bmj.m1198 OpenAlex: https://openalex.org/W3012690941
    OpenAlex
  26. Kelvin Kai-Wang To , Owen Tak-Yin Tsang , Wai-Shing Leung , Anthony Raymond Tam , Tak-Chiu Wu , David Christopher Lung et al. (2020). Temporal profiles of viral load in posterior oropharyngeal saliva samples and serum antibody responses during infection by SARS-CoV-2: an observational cohort study . The Lancet Infectious Diseases, 20(5), 565-574. Elsevier BV.
    Type: Article DOI: 10.1016/s1473-3099(20)30196-1 OpenAlex: https://openalex.org/W3012756997
    OpenAlex
  27. Robert D. Truog , Christine Mitchell , George Q. Daley (2020). The Toughest Triage — Allocating Ventilators in a Pandemic . New England Journal of Medicine, 382(21), 1973-1975. Massachusetts Medical Society.
    Type: Article DOI: 10.1056/nejmp2005689 OpenAlex: https://openalex.org/W3012762625
    OpenAlex
  28. Celso Arango (2020). Lessons Learned From the Coronavirus Health Crisis in Madrid, Spain: How COVID-19 Has Changed Our Lives in the Last 2 Weeks . Biological Psychiatry, 88(7), e33-e34. Elsevier BV.
    Type: Article DOI: 10.1016/j.biopsych.2020.04.003 OpenAlex: https://openalex.org/W3015217122
    OpenAlex
  29. Ali A. Asadi-Pooya , Leila Simani (2020). Central nervous system manifestations of COVID-19: A systematic review . Journal of the Neurological Sciences, 413, 116832. Elsevier BV.
    Type: Article DOI: 10.1016/j.jns.2020.116832 OpenAlex: https://openalex.org/W3016124786
    OpenAlex
  30. Eloise Williams , Katherine Bond , Bowen Zhang , Mark Putland , Deborah A. Williamson (2020). Saliva as a Noninvasive Specimen for Detection of SARS-CoV-2 . Journal of Clinical Microbiology, 58(8), e00776. American Society for Microbiology.
    Type: Article DOI: 10.1128/jcm.00776-20 OpenAlex: https://openalex.org/W3017281285
    OpenAlex
  31. Armando D'Agostino , Benedetta Demartini , Simone Cavallotti , Orsola Gambini (2020). Mental health services in Italy during the COVID-19 outbreak . The Lancet Psychiatry, 7(5), 385-387. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(20)30133-4 OpenAlex: https://openalex.org/W3018280881
    OpenAlex
  32. Ann K. Shinn , Mark Viron (2020). Perspectives on the COVID-19 Pandemic and Individuals With Serious Mental Illness . The Journal of Clinical Psychiatry, 81(3). Physicians Postgraduate Press, Inc.
    Type: Article DOI: 10.4088/jcp.20com13412 OpenAlex: https://openalex.org/W3020559522
    OpenAlex
  34. Susanne Joebges , Nikola Biller-Andorno (2020). Ethics guidelines on COVID-19 triage—an emerging international consensus . Critical Care, 24(1), 201-201. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13054-020-02927-1 OpenAlex: https://openalex.org/W3022549276
    OpenAlex
  35. A. Mark Clarfield , Tzvi Dwolatzky , Shai Brill , Yan Press , Shimon Glick , Pesach Shvartzman et al. (2020). Israel Ad Hoc COVID‐ 19 Committee: Guidelines for Care of Older Persons During a Pandemic . Journal of the American Geriatrics Society, 68(7), 1370-1375. Wiley.
    Type: Article DOI: 10.1111/jgs.16554 OpenAlex: https://openalex.org/W3023360925
    OpenAlex
  36. Cherrie Galletly (2020). Psychiatry in the COVID-19 Era . Australian & New Zealand Journal of Psychiatry, 54(5), 447-448. SAGE Publications.
    Type: Article DOI: 10.1177/0004867420920359 OpenAlex: https://openalex.org/W3023940286
    OpenAlex
  37. Elizabeth Pellicano , Marc Stears (2020). The hidden inequalities of COVID-19 . Autism, 24(6), 1309-1310. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320927590 OpenAlex: https://openalex.org/W3024433335
    OpenAlex
  38. Élie Azoulay , Sadek Beloucif , Bertrand Guidet , Dominique Pateron , Benoît Vivien , Matthieu Le Dorze (2020). Admission decisions to intensive care units in the context of the major COVID-19 outbreak: local guidance from the COVID-19 Paris-region area . Critical Care, 24(1), 293-293. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13054-020-03021-2 OpenAlex: https://openalex.org/W3033266100
    OpenAlex
  39. Helen Grote , Fizz Izagaren (2020). Covid-19: The communication needs of D/deaf healthcare workers and patients are being forgotten . BMJ, 369, m2372. BMJ.
    Type: Article DOI: 10.1136/bmj.m2372 OpenAlex: https://openalex.org/W3034239949
    OpenAlex
  40. Andrew Clark , Mark Jit , Charlotte Warren-Gash , Bruce Guthrie , Harry H X Wang , Stewart W Mercer et al. (2020). Global, regional, and national estimates of the population at increased risk of severe COVID-19 due to underlying health conditions in 2020: a modelling study . The Lancet Global Health, 8(8), e1003-e1017. Elsevier BV.
    Type: Article DOI: 10.1016/s2214-109x(20)30264-3 OpenAlex: https://openalex.org/W3034823740
    OpenAlex
  41. Kimberly Noel , Brooke Ellison (2020). Inclusive innovation in telehealth . npj Digital Medicine, 3(1), 89. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41746-020-0296-5 OpenAlex: https://openalex.org/W3037092559
    OpenAlex
  42. Joseph J Amon , Margaret Wurth (2020). A Virtual Roundtable on COVID-19 and Human Rights with Human Rights Watch Researchers. PubMed, 22(1), 399-413.
    Type: Article OpenAlex: https://openalex.org/W3043168747
    OpenAlex
  43. Stephanie H. Ameis , Meng-Chuan Lai , Benoit H. Mulsant , Péter Szatmári (2020). Coping, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond . Molecular Autism, 11(1), 61-61. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-020-00365-y OpenAlex: https://openalex.org/W3044399838
    OpenAlex
  44. J Montgomery , HJ Stokes-Lampard , MD Griffiths , D Gardiner , D Harvey , G Suntharalingam (2021). Assessing whether COVID-19 patients will benefit from critical care, and an objective approach to capacity challenges during a pandemic: An Intensive Care Society clinical guideline . Journal of the Intensive Care Society, 22(3), 204-210. SAGE Publications.
    Type: Article DOI: 10.1177/1751143720948537 OpenAlex: https://openalex.org/W3049115878
    OpenAlex
  45. Eduard Vieta , Víctor Pérez , Celso Arango (2020). Psychiatry in the aftermath of COVID-19 . Revista de Psiquiatría y Salud Mental (English Edition), 13(2), 105-110. Elsevier BV.
    Type: Article DOI: 10.1016/j.rpsmen.2020.04.004 OpenAlex: https://openalex.org/W4205598417
    OpenAlex
  46. (2020). Disability considerations during the COVID-19 outbreak . Bangladesh Physiotherapy Journal, 10(1). Bangladesh Physiotherapy Association (BPA).
    Type: Article DOI: 10.46945/bpj.10.1.04.07 OpenAlex: https://openalex.org/W4206328372
    OpenAlex