Abstract
Autism is a national priority, as highlighted in the NHS Long Term Plan, the Right to Be Heard report, National Autism Strategy (2021-2026) and most recently in the 2022 Health and Care Act. One significant area of concern is the striking health inequities and reduced life expectancy experienced by autistic people.
In the United Kingdom, autistic people represent at least 1.1% of the population7. Autistic people have the same health care needs as anyone, and are additionally more vulnerable to a large number of co-occurring physical and mental health conditions than the general population, requiring input from all parts of NHS healthcare services. Despite this, many autistic people experience barriers to accessing services that mean they struggle to get their health needs met. In one recent study, one third of autistic respondents reported being unable to access any form of healthcare for potentially life-threatening conditions. Communication difficulties with healthcare staff are frequently reported as one of the most challenging barriers.
Communication differences and difficulties have always been a core part of the diagnostic criteria for autism. They are also something that autistic people frequently report as finding disabling in their everyday lives, including when trying to access health services. Historically, these communication difficulties were believed to stem uniquely from autistic ‘impairments’. However, it is now understood that successful communication and mutual understanding depend on many factors and that communication challenges are best thought of as a two-way mismatch rather than the problem of one individual (see Theme 4: The double empathy problem, below). 02
Aims
In the United Kingdom, the Equality Act and the Autism Act set out the requirement for reasonable adjustments14 to be made in order to make services more accessible to autistic people. However, present guidance, particularly around best practice for communication, lacks detail. The aims of this report are twofold. Firstly, the suggestions below can be used to form the basis of reasonable and anticipatory adjustment standards for communicating with autistic patients. Secondly, we hope this report will provide the essential information, drawn from autistic lived-experience and high-quality research, for supporting practitioners to feel confident when communicating with their autistic patients.
In the following pages we outline seven key themes that have direct bearing on communicating with autistic patients in healthcare settings. At the end of each theme we list our recommendations. A quick-access, ‘Summary of Recommendations’ is provided at the start of this report (p03). Key terms are italicised throughout and explanations can be found in the ‘Glossary’ at the end of this report (p14).
In the United Kingdom, autistic people represent at least 1.1% of the population7. Autistic people have the same health care needs as anyone, and are additionally more vulnerable to a large number of co-occurring physical and mental health conditions than the general population, requiring input from all parts of NHS healthcare services. Despite this, many autistic people experience barriers to accessing services that mean they struggle to get their health needs met. In one recent study, one third of autistic respondents reported being unable to access any form of healthcare for potentially life-threatening conditions. Communication difficulties with healthcare staff are frequently reported as one of the most challenging barriers.
Communication differences and difficulties have always been a core part of the diagnostic criteria for autism. They are also something that autistic people frequently report as finding disabling in their everyday lives, including when trying to access health services. Historically, these communication difficulties were believed to stem uniquely from autistic ‘impairments’. However, it is now understood that successful communication and mutual understanding depend on many factors and that communication challenges are best thought of as a two-way mismatch rather than the problem of one individual (see Theme 4: The double empathy problem, below). 02
Aims
In the United Kingdom, the Equality Act and the Autism Act set out the requirement for reasonable adjustments14 to be made in order to make services more accessible to autistic people. However, present guidance, particularly around best practice for communication, lacks detail. The aims of this report are twofold. Firstly, the suggestions below can be used to form the basis of reasonable and anticipatory adjustment standards for communicating with autistic patients. Secondly, we hope this report will provide the essential information, drawn from autistic lived-experience and high-quality research, for supporting practitioners to feel confident when communicating with their autistic patients.
In the following pages we outline seven key themes that have direct bearing on communicating with autistic patients in healthcare settings. At the end of each theme we list our recommendations. A quick-access, ‘Summary of Recommendations’ is provided at the start of this report (p03). Key terms are italicised throughout and explanations can be found in the ‘Glossary’ at the end of this report (p14).
| Original language | English |
|---|---|
| Number of pages | 18 |
| Publication status | Published - 20 Sept 2022 |
Bibliographical note
Contributors:Blessing Godfree, NHS Frimley CCG
David Keaveney-Sheath, South-East Learning Disability and Autism Programme, NHS England
Gemma L. Williams (co-ordinator), Centre of Resilience for Social Justice, University of Brighton and National
Development Team for Inclusion
Helen Cave
Jamie + Lion, Jamie + Lion Limited
Jodie Wood
Jon Adams, Autistic Advocate, Researcher and Artistic Director: Flow Observatorium
Karen Forrest, Specialist Occupational Therapist and Advanced Sensory Integration Practitioner
Mary Doherty, Dept of Neuroscience, Brighton & Sussex Medical School.
Nick Chown, London South Bank University
Peter Bull, Sussex Partnership NHS Foundation Trust
Rachel Fricker
Ria Foster
Rosie Murray, Sussex Partnership NHS Foundation Trust
Sebastian C. K. Shaw, Department of Medical Education, Brighton and Sussex Medical School
Tish Marrable, University of Sussex
Tré Ventour-Griffiths, Public Historian of Black British History.
To cite:
Williams, G. L., Adams, J., Bull, P., Cave, H., Chown, N., Doherty, M., Forrest, K., Foster, R., Fricker, R., Godfree, B., Keaveney-Sheath, K., Knight, J., Marrable, T., Murray, R., Shaw, S. C. K., Ventour-Griffiths, T., Wood, J. (2022) More than words: Supporting effective communication with autistic people in health care settings. Economic and Social Research Council. Available at:https://www.boingboing.org.uk/more_than_words/