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

Publication date: 2 Oct 2020 Added to AutiHub: 5 Jul 2026 Type: Preprint Article language: English
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Authors

Publication authors
15
Publication authors identified as autistic
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

Abstract

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.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
46
Total cited references integrated for this publication.
Cited references with an identified autistic author
3 / 46 (6.5%)
Cited author occurrences identified as autistic
10 / 286 (3.5%)
Among occurrences linked to AutiHub author records: 10 / 65 (15.4%). Distinct cited authors identified as autistic: 6 / 265 (2.3%).
Cited author occurrences linked to AutiHub author records
65 / 286 (22.7%)
Distinct linked cited authors: 50 / 265 (18.9%)
Linked cited-author occurrences not identified as autistic
55 / 65 (84.6%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 55 / 286 (19.2%). Distinct linked cited authors not identified as autistic: 44 / 50 (88.0%).
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