King's College London

According to a new study published today in BMJ OPEN, the COVID-19 pandemic has further exacerbated existing healthcare inequalities for autistic people and has likely contributed to disproportionate increases in morbidity and mortality, mental health/ behavioural difficulties and reduced quality of life.

Researchers, clinicians and the autism community are calling for urgent updates to policies and guidelines regarding the accessibility of COVID-19 (and broader healthcare) services to prevent the widespread exclusion of autistic people, which represents a violation of international human rights law.

The research team, jointly led by King’s College London’s Institute of Psychiatry, Psychology & Neuroscience and University of Cambridge reviewed policies from 15 European member states, published March-July 2020, relating to:

• access to COVID-19 tests;
• provisions for treatment, hospitalisation and intensive care units (ICU); and
• changes to standard health and social care.

In parallel, they analysed survey data on the lived experiences of 1,301 autistic people and caregivers.

There were already concerns that COVID-19 may disproportionately impact autistic people, who represent at least 1% of European citizens and at least 32% of whom have a co-occurring intellectual disability.

These inequalities can be attributed to physical health conditions which are experienced at substantially higher rates by autistic people, as compared to the general population, including co-occurring health conditions associated with high risk of severe illness from COVID-19 such as cardiovascular and immune issues, diabetes and obesity. In addition, autistic people experience numerous existing barriers to accessing general healthcare, which may also increase their risk of being excluded from COVID-19 services.

The results from this study have shown that autistic people experienced four key significant barriers accessing COVID-19 services.

• Despite being at elevated risk for severe illness due to co-occurring health conditions, there was a lack of accessibility of COVID-19 testing (e.g. lack of reasonable adjustments/ provision of preparatory materials).
• Many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible - predominantly resulting from individual differences in communication needs (e.g. difficulties accessing telephone services).
• ICU triage protocols in many European countries may have (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments.
• Interruptions to standard health and social care left over 70% of autistic people without everyday support, in the absence of appropriate mitigation measures.

Dr Bethany Oakley, research associate at the Institute of Psychiatry, Psychology & Neuroscience, Kings College, London said: “Increasing service capacity and investing in resilience planning should be the primary response for decision makers to make sure that there is equal access to hospital and intensive care resources, across the population, and that steps are taken to make sure that autistic people and all those with developmental differences are not put at a disadvantage.

“That’s why it is ethically necessary for formal guidance to be provided for clinicians on the fair allocation of resources in times of scarcity as we are seeing in the current pandemic. On the grounds of fundamental human rights, it is paramount that this guidance does not discriminate against individuals or groups of individuals on any illegitimate grounds, including autism and related conditions.”

This project was supported by the Innovative Medicines Initiative 2 Joint Undertaking. This Joint Undertaking receives support from the European Union’s Horizon 2020 research and innovation programme and EFPIA and SFARI, Autistica, AUTISM SPEAKS.

COVID-19 health and social care access for autistic people: European policy review (DOI 10.1136/bmjopen-2020-045341) (Bethany Oakley, Julian Tillmann, Amber Ruigrok, Aurélie Baranger, Christian Takow, Tony Charman, Emily Jones, James Cusack, Mary Doherty, Pierre Violland, Agnieszka Wroczyńska, Emily Simonoff, Jan K Buitelaar, Louise Gallagher, Declan G M Murphy) was published in BMJ Open.

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