Introduction

Autism is relatively common, with current prevalence rates estimated at around 1 in 36 people (Centers for Disease Control and Prevention, 2023). It is now known that relatively few people with autism have an additional learning disability (around 15% or less), but they are the ones who are most vulnerable, have the poorest health outcomes, are at greatest risk of abuse and most in need of additional help with accessing healthcare (National Autistic Society, 2023).

This article is part two of a two-part series, and explores the nurse’s role in supporting people with autism and examples of reasonable adjustments that can be made. The first part of this series provided an overview of autism and how it may impact a person.

The term ‘person with autism’ is used throughout this article, but it is acknowledged that there is an ongoing debate around appropriate terminology, with some preferring the term ‘autistic person’. Healthcare professionals must consult with their patients, colleagues and others with autism to confirm the language they would prefer to be used around them.

Nursing education

There are multiple short courses, such as the Oliver McGowan autism and learning disability training courses, which are mandatory for all those working in health and social care (Health Education England, 2023). Other resources (eg academic articles and books) are also available, and may be useful in improving one’s knowledge about autism. In order to better understand autism in a healthcare setting, professionals can also simply ask people with autism about their healthcare needs.

Resources for reasonable adjustments

Patients with autism often have a hospital passport or similar resource to facilitate communication of their needs to healthcare professionals (National Autistic Society, 2020). However, many people with autism report that their hospital passport is often not read and instead filed away, despite this being a useful resource that healthcare professionals can use to better interact with patients.

How can nurses support patients with autism?

Reasonable adjustments

According to the Equality Act 2010, reasonable adjustments are attitudinal, procedural, practical or physical measures that a service provider or employer could put in place to prevent a person who comes under a particular protected characteristic (such as disability) from being unfairly disadvantaged. While it is important to stress that a person with autism is, first and foremost, an individual and that a blanket approach must be avoided, the following adjustments may be useful to consider:

• Provide information in a variety of formats including written, verbal, signing or pictorial forms of communication
• Make or amend appointments using various means, such as phone or email
• Provide quiet waiting spaces away from busy and noisy areas
• Allow for longer appointment times so that questions can be asked and information processed
• Arrange for the patient to see the same staff member at different appointments if possible
• Offer acclimatisation visits or virtual tours of different healthcare environments
• Be clear on what has been decided and agree on next steps at the end of an appointment (Haydon et al, 2021)

Most of these adjustments make a significant difference to the experiences of patients with autism, and are relatively easy and cost effective to implement.

Specific examples

When offering any medical or nursing appointments to a patient or service user with autism, ‘batch’ appointment times should be avoided. For example, a 10am appointment must take place at 10am and not 10:15am, 10:30am or 10:45am. If delays occur, the nurse should:

• inform the patient
• explain the reason for the delay
• apologise for the delay
• give some indication as to the length of the delay

This is common courtesy and may avoid making the patient anxious, agitated or frustrated to the point of experiencing a meltdown.

Nurses should be aware of the sensory profile of a person on the autism spectrum, as sensory hypersensitivity may present problems in healthcare settings. The following examples may induce sensory overload in some people with autism:

• flickering fluorescent lighting
• strongly contrasting colours
• strong and unfamiliar smells
• unexpectedly being touched
• the tactile feeling of certain textiles or clothing items
• the sound of some equipment or machines (National Autistic Society, 2023)

Often, the best way to determine whether a person’s sensory processing profile will be adversely affected by the healthcare environment is to ask them. If physical touch is necessary, always inform the patient, allow time for this information to be processed and seek consent.

The nurse should be aware of the need to assess and put in place reasonable adjustments in line with both the wording and purpose of the Equality Act 2010, keeping in mind that what may work for one person with autism may not work for another, so the nurse must always ask the patient to clarify their needs.

Conclusions

Autism is a relatively common condition that impacts a person’s sensory processing, social communication and ability to interact. Nurses will encounter and engage with people with autism who may be either patients or colleagues. People with autism have the same right to high-quality healthcare as anyone else, so education about autism and openly communicating with individual patients about support is key.

For further information, contact the National Autistic Society: https://www.autism.org.uk/