Autism is a spectrum disorder that encompasses a range of symptoms, some of which are shared by all individuals with the condition, albeit at different intensities. Some argue that the condition's name of a spectrum disorder may be in fact too broad, as those with more severe learning disabilities who suffer frequent severe meltdowns do not seem comparable to someone with much less obvious sensitivities, and who is able to function well with daily activities such as work. Either way, the important point is that this is a lifelong condition that, whether hidden or not, affects the way the person perceives the environment around them, affecting their ability to communicate and cope with the world they are in.
It is, therefore, important for nurses to have a good understanding of this basic overview: that some symptoms are in fact hidden on the whole, but may present through the way someone communicates in a subtle, yet impactful, way. By having an understanding of this, misunderstandings about someone's intentions can be avoided. Nurses will come across colleagues with autism, as well as patients. Like me, others may also be misunderstood at times because of their condition, so this article aims to point out some areas of the condition that nurses need to be familiar with.
Seeing the world differently
I am a nurse, yet I have been diagnosed with autistic spectrum disorder. Special interests are something that are more well known about with this condition. I have about 200 publications, as this is a special interest of mine that I do as a hobby. I also love painting and playing the piano.
I communicate cheerfully and I am chatty – one might not notice an issue, but it is the internal world that the people on the outside do not see.
I had a special interest previously in arrhythmias and could understand these to the finest detail. However, communication is something I am less aware of, despite my friendly nature. It feels uncomfortable for me every single day to communicate with others, but I ‘wear a mask’ and try to get on with it, with the help of multiple anti-anxiety medications. I have learned from my peers some of what is acceptable, but it does not change the daily nervousness I feel inside, and my confusion at multiple social situations in work, in my family, and in public in general. Social anxiety is all too common in autism, but can often be masked by the individual as a coping mechanism, leading to complex mental health issues over the years involving chronic stress, anxiety, depression and even post-traumatic stress disorder (PTSD), because of the daily stress of having to ‘keep up’ and ‘pretend’ while not being able to be oneself.
I chose nursing because of my interests and my passion to make a difference in the world, and I have since learned there are many other autistic people who have done the same. It is a common misunderstanding that someone with autism is unable to cope in a profession that involves some degree of change and social ability. Autistic people frequently are able to learn to mask their social issues by learning acceptable traits from others when communicating, but it does not come intuitively. There is some change on a day to day basis in nursing, but often the routine is something that stays the same in general, which is what I enjoy.
A spectrum of social challenges
The National Autistic Society (NAS) (2021) is one of the leading charities that helps people to understand autism. The NAS (2021) notes the verbal and non-verbal difficulties those with autism have when socially interacting. Misunderstandings are therefore common. Gestures and tone of voice can be difficult to understand. Some may have no ability to speak or have limited speech, while others have excellent language skills but struggle to understand sarcasm or tone of voice. Common challenges also include taking things too literally, not understanding abstract concepts, needing extra time to process information or to answer questions, and repeating what others say to them, known as echolalia. There can also be a difficulty with being able to ‘read’ other people, to recognise or understand someone else's feelings or intentions, and in expressing their own emotions, making it harder to navigate the social world.
It is, therefore, important to have an understanding that the condition causes these misunderstandings, rather than the person. An autistic person may appear insensitive, seek out time alone away from other people, not seek comfort from other people, appear to behave in a strange or socially inappropriate way, and may find it hard to develop friendships (NAS, 2021).
Tendency of routine and repetition
To an autistic person, the world can be confusing and unpredictable. Therefore, routine can make this all more bearable. The person may always travel the same way to and from work or wear the same clothes, or eat the same breakfast. Of course, non-autistic people may have some of these traits! Autistic people may also repeat movements such as hand flapping, rocking, pen twirling, opening and closing doors in order to feel calmer when stressed, or because they find it enjoyable. Some of these ‘stimming’ traits (NAS, 2020a) could be far subtler in others, yet perhaps still noticeable to someone who does not have autism.
A routine being changed can be distressing and could make someone very anxious if they have autism.
A sensory world that is unique
Autistic people can be very sensitive or not sensitive enough to light, sound, taste or touch. Non-autistic people may identify with some traits but it is important to remember a diagnosis encompasses an entire spectrum of multiple traits to varying degrees.
Interestingly, perception of sounds, touch, tastes, smells, light, colours, temperatures or pain can be altered in someone with autism. I find I am sensitive to background noise even if it is very distant, and I scarcely notice pain if I cut or burn myself by accident, only noticing the severity once I have seen the injury later on. So with autism, it is about the physical internal world, as well as the mental internal world. Many autistic people prefer not to hug due to discomfort, which can be misinterpreted as being cold and aloof, for example. I would hug my friends and family by choice but find it unbearably awkward if someone tries to hug me or god forbid they kiss my cheek! The pandemic has ensured these behaviours have not happened for some time. I am aware I may not sound the ideal nurse, but I am good at the job, I promise! I enjoy being kind to others, I just am not ‘touchy feely’ like some people expect a nurse to be. A lot of people appreciate the fact I am not that way anyway, I find, as a lot of other people also like their personal space protected.
Because of such sensory sensitivities, an autistic person may end up avoiding schools, workplaces, or shopping centres as sensory overload can be overwhelming.
Highly focused interests
Often from a young age the special interest can develop, and can then change over time or be lifelong. It is important to be aware that a person may like to talk about their special interest a lot and not understand the social cues indicating boredom, and may come across as rude in not letting other people speak. The NAS (2021) states that autistic people can become experts in their special interests and often like to share their knowledge. Greta Thunberg's intense interest, for example, is protecting the environment. Like anyone, autistic people gain huge amounts of pleasure from pursuing their interests and see them as fundamental to their wellbeing and happiness (NAS, 2021). This can be an incredibly useful trait as autistic people can do well academically and in the workplace, but they can also become so engrossed in particular topics or activities that they neglect other aspects of their lives.
Anxiety
The main triggers for the anxiety experienced by someone with autism may be social situations and change (NAS, 2020b). Recognising triggers is important, and if supporting a member of staff or patient with autism, it may be good to work on what can be done to support someone with regards to triggers. Coping mechanisms can be developed to help reduce the anxiety. The difficultly can be, however, that many autistic people have difficulties recognising and regulating their emotions.
For me, I may appear and even feel happy, when I have also recently been traumatized by something so badly I have lost sleep over it but not known to seek help. I have been engaging in long term therapy for the last 2 years now and this has helped enormously. One thing I am repeatedly reminded of is that I may come across very happy when I might actually be upset, and sometimes I am slow to recognise how upset I am feeling about something until I am overwhelmed with emotion, having spent many years masking emotions and behaviours with a certain ‘happy’ temperament. Sometimes this is useful, for example if at work, but it is important for me to be aware of it. A year ago I started to become very depressed and felt I should not exist anymore. Nothing made any sense. It turned out there were so many triggers I had missed. I have complex PTSD due to repeatedly suffering serious traumas in my life and not having the right support or coping mechanisms at the time to deal with these horrible experiences. The NAS (2021) states that over one-third of autistic people have serious mental health issues and too many autistic people are being failed by mental health services.
Meltdowns
An important thing to know about when nursing an autistic person, is that meltdowns can happen. These can be intense and exhausting, and happen as a result of the person feeling so overwhelmed by their current situation that they temporarily lose behavioural control, where they may cry, but in more severe cases may scream or shout. Physical control may also be lost where the person may kick, lash out, or bite. These behaviours in children can be mistaken for temper tantrums. Parents with autistic children often experience hurtful comments and judgmental stares from other people who do not understand what is happening (NAS, 2021).
Shutdowns
A shutdown may be noticed in someone you nurse or someone you work with: it appears less intense to the outside world than a meltdown but can feel equally debilitating. These are responses to feeling overwhelmed but may be more passive, where the person ‘goes quiet’ or ‘shuts off’. The person may not be able to interpret how to react to their feelings of overwhelm so they experience the feelings internally without being able to express them.
Conclusion
I hope this article helps to give an overview of some of the more social types of issues you may encounter from patients and staff alike if they have what can essentially be a hidden disability. Autism can be hard to understand but it is important it is accepted. Many things can be worked around, and the NAS (2021) website gives employers advice on how to support colleagues with the condition, and also gives general advice on understanding the condition better.