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Supporting patients with autism: part one

Christopher Barber First published: Last updated:

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). There are between 700 000 and 2 million people in the UK who have autism (National Autistic Society, 2023). Therefore, it is likely that at some point in their career, nurses will encounter and engage with a person with autism.

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

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.

What is autism?

The author was once asked ‘what is this disease called autism?’ by a nursing colleague during a conference nearly 20 years ago. Having autism is not equivalent to having an illness or disease. Autism means that the brain operates in a different, but not inferior way from other people, hence use of the term ‘neurodivergent’. People are born with autism, but this is not a childhood condition that improves or disappears after becoming an adult (NHS, 2022); autism is a lifelong condition and many people are diagnosed long after childhood (eg at 50, 60 or 70 years of age) (NHS, 2022).

Regardless of common misconceptions, autism is not:

  • the fault of the person's parents
  • a transmittable disease
  • the same as having a learning disability (around 15% of people with autism have an additional learning disability)
  • a condition that can be cured (National Autistic Society, 2023)

However, some people with autism require support for the specific challenges that they face throughout their lives. A ‘one size fits all’ approach to healthcare support and delivery will not meet the needs of the individual and may even cause harm. People with autism, first and foremost, have individual needs and are not part of a generalised collective. Therefore, generalised approaches may lead to frustration, isolation, feelings of abandonment by the system and other forms of harm.

This article provides an overview of some of the many difficulties that people with autism may experience and the ways in which nurses can support people with autism.

Common issues associated with autism

Social communication

Some people with autism experience difficulties with understanding and processing both verbal and non-verbal language, such as gestures or tone of voice, although this is not an issue experienced only by people with autism. Some people with autism are unable to speak, have limited speech or use echolalia (repetition of sounds, phrases or words), while others may struggle to understand sarcasm or tone (National Autistic Society, 2023). It is not the sole responsibility of the person with autism to adapt to the style of communication used by others, and other people should take some responsibility for being aware of how to adjust their communication when interacting with people with autism.

Social interaction

Some people with autism may experience difficulties in recognising or understanding other people’s feelings (lack of empathy) and intentions (limited theory of mind), as well as expressing their own emotions, which can cause issues when engaging with others (National Autistic Society, 2023). Some people with autism may, at times, be insensitive to the needs of others or prefer their own company, as they find social engagement challenging and tiring. However, Fletcher-Watson and Bird (2019) challenged the historical idea that people with autism are unable to express empathy and compassion for others, stating that empathy cannot be defined with any accuracy and that the expression of empathy and emotions is a common issue experienced by people who do not have autism.

Sensory issues

Some people with autism may experience over- or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain, although such sensory issues can also be experienced by many people without autism, such as among pregnant women. People with autism may find certain background sounds (which other people ignore or block out) unbearably loud or distracting, which can cause anxiety or even physical pain. Many (but not all) people with autism may find some forms of physical contact uncomfortable and go to some lengths to avoid such contact. Some social environments, such as shopping centres, cafes and places of worship, can be particularly overwhelming and cause sensory overload and potential behavioural ‘meltdowns’ (National Autistic Society 2020a; 2023).

Meltdowns and routines

The National Autistic Society (2020a) defined a meltdown as:

An intense response to an overwhelming situation. It happens when someone becomes completely overwhelmed by their current situation and temporarily loses control of their behaviour. This loss of control can be expressed verbally (eg shouting, screaming, crying),  physically  (eg kicking, lashing out, biting) or in both ways.

However, some people with autism who experience states of hyper-arousal may not present with the classic expressions or behaviour associated with having a meltdown but may, instead, present with signs of withdrawal, such as becoming very quiet or non-verbal or, in extreme cases, catatonic. This is often seen as the ‘freeze’ aspect of a ‘fight, flee or freeze’ response to incidents, which some people with autism may perceive as either actually or potentially threatening to their sense of safety.

Meltdowns can also be caused by unannounced changes in a person’s normal daily or hourly routines, as many people with autism find such changes difficult to comprehend and manage. People with autism often need fixed routines in order to make sense of their frequently confusing surroundings, and can react in ways that others may find challenging if the routines are broken (National Autistic Society, 2020b). Routines can include the types of food that are eaten, the order in which food items are consumed, the order of social activities, getting out of bed in the morning and going to bed at night, and personal hygiene routines. Having to attend a hospital either as an out- or inpatient can often require a change in such routines, potentially causing distress to the individual.

Highly-focused interests

Many people with autism have intense and highly-focused interests, often from a fairly young age. These can change over time or remain constant throughout their lifetime. People with autism can become experts in their special interests and often like to share their knowledge with others. Like most people, those with autism gain huge amounts of enjoyment from pursuing their interests and see them as fundamental to their wellbeing and happiness. Being highly focused helps many people with autism perform well academically and in the workplace, but they can also become so engrossed in specific topics or activities that they neglect other aspects of their lives (National Autistic Society, 2023).

Physical and health conditions

People with autism experience the same physical and health conditions that require nursing and/or medical attention and support as everyone else (Barber, 2001; 2018). Evidence also suggests that the prevalence of certain mental health conditions are increased in people with autism, which will result in increased access of nursing support and care (Foundation for People with Learning Disabilities, 2023).

Conclusions

Autism is a relatively common condition that impacts a person’s sensory processing, social communication and abilities to interact. Every individual with autism experiences unique presentations of the condition and, therefore, have different needs.

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

Reflective exercise

Consider the following case:

There has been an increase in the number of patients with autism in the community nursing team where you work. You have been asked to give a short 5-minute presentation about autism during a team meeting.

  • How would you structure the presentation? What information would you include in the presentation and why?
  • Where would you find the information that you include in the presentation? Where would you point your colleagues to for further information on autism?
References

Barber C. The training needs of registered nurses engaged in work with people with an autistic spectrum disorder. Good Autism Practice. 2001:2(2); 86-96

Barber C. Working with a patient with an autism spectrum condition. British Journal of Nursing. 2018:27(21);1232-1232. https://doi.org/10.12968/bjon.2018.27.21.1232 

Centers for Disease Control and Prevention. Data and statistics on autism spectrum disorder. 2023. https://www.cdc.gov/ncbddd/autism/data.html (accessed 10 October 2023)

Fletcher-Watson S, Bird G. Autism and empathy: what are the real links? Autism. 2019;24(1):3-6. https://doi.org/10.1177/1362361319883506

Foundation for People with Learning Disabilities. Learning disability statistics: mental health problems. 2023. www.learningdisabilities.org.uk/learning-disabilities/helpinformation/learning-disability-statistics-/187699 (accessed 10 October 2023)

National Autistic Society. Meltdowns – a guide to all audiences. 2020a. https://www.autism.org.uk/advice-and-guidance/topics/behaviour/meltdowns/all-audiences (accessed 10 October 2023)

National Autistic Society. Dealing with change – a guide for all audiences. 2020b.  https://www.autism.org.uk/advice-and-guidance/topics/behaviour/dealing-with-change/all-audiences (accessed 10 October 2023)

National Autistic Society. What is autism? 2023. https://autism.org.uk/advice-and-guidance/what-is-autism (accessed 10 October 2023)

NHS. What is autism? 2022. https://www.nhs.uk/conditions/autism/what-is-autism/ (accessed 10 October 2023)

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