The prevalence rate for autism spectrum disorders is now thought to be between 1% and 1.5% and even more people will be undiagnosed or misdiagnosed.
It is likely that nurses in community and acute healthcare, in addition to specialist services, will have contact with people with autism. Many nurses may feel equipped but it is more important than ever to be autism aware.
Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a different way of being and thinking.
Many people with autism struggle to access healthcare because of their difficulties in communication, the way they interact with others and, in particular, the sensory sensitivities that make environments stressful.
Going for a routine dental check-up or a GP appointment can instil feelings of blind panic for many individuals. Going into hospital for any acute health procedure is much worse and although they may not show it externally, most people with autism will be terrified.
There are a few key points that nurses working with autism would like every nurse to know about their patients.
“Please do not make presumptions as everyone with autism is different”
Please do not make presumptions as everyone with autism is different. Find out about how a person’s autism affects them as soon as you can in a consultation, as this can stop any problems later. Ask them and ask relatives – for example, they may have problems with being touched and this may cause problems when carrying out even simple procedures, such as measuring blood pressure.
Learn about your patient’s coping strategies. Some people may have coping strategies that they use in stressful situations, such as in admission to hospital.
Communicate in ways that your patient understands and knows best. Verbal conversation may be best as they may find some body language difficult to read. Some people don’t make eye contact because they cannot cope with taking in both verbal and visual information at the same time. Writing information down can also help.
You need to use clear, unambiguous language with no confusing terminology and it is important to only give the information needed. Give time for people to process the information given to them and please avoid waffle. Be patient and wait for a response.
Your patient will be outside of the certainty and security of their routine. Use structure rather than open-ended arrangements to avoid uncertainty – for example, don’t use vague terms such as soon, perhaps or maybe. Be as precise as you can be. A consistent approach is always best – for example seeing the same professional and going to the same place in the hospital or clinic.
Try to minimise any unnecessary noise, such as equipment that buzzes or bleeps. Make sure the environment is not disruptive and avoid sensory overload. Remember that all senses can be affected (including smell or touch). If you have some time, look at whether the room/place/ward is friendly. You could use tools such as the Checklist for Autism Friendly Environments.
Always ensure your patient knows that if they are getting stressed they can escape to an identified area – for example, a quieter, less busy area. Perhaps you may identify a waiting room that is not used much.
“Do not be hesitant to ask the patient what they need”
Nurses are often not shy and retiring, so please do not be hesitant to ask the patient what they need. They will appreciate a direct no-nonsense approach that is clear about what is going on. Many acute healthcare settings now have learning disability liaison nurses, who can often give advice about autism. These roles are essential if we are to effectively meet the health needs of people with autism.
More information about autism is available at www.autism.org.uk
Stephen Simpson is senior autism nurse practitioner (RNLD), South West Yorkshire Foundation Trust