I once had a meeting with a psychiatrist regarding my research about common mental disorders among women, a large number of whom are nurses. I asked: Since there is an association between common mental disorders and neurodevelopmental disorders, could the latter partly explain the high prevalence of common mental disorders among women employed within the health care sector, such as nurses? The psychiatrist answered: ‘Well, ADHD perhaps… but you don't find autism among nurses.’ I asked why, and the psychiatrist answered: ‘Because that job requires empathy and social skills, and autistic people do not have that, which means that they are uninterested in that kind of work.’
I left the psychiatrist's room and felt that something wasn't right, since I am a nurse with autism myself. Am I really the only one in the world? I decided to investigate the phenomenon further. This article presents background information regarding autism, offers arguments as to why nurses with autism is a relevant area to consider, details what I found out about nurses with autism, and my conclusions arising.
What is autism?
Autism spectrum disorder (ADO) has probably existed for hundreds of years but didn't get its name until the middle of the 19th century (Wolff, 2004). According to mental health literature, autism is a lifelong neurodevelopmental condition, the prevalence of which has increased rapidly around the world during recent decades (Anorson et al, 2021; Autism Europe, 2023). This increase can partly be explained by an increase in diagnoses given (Anorson et al, 2021), due to higher awareness among care professionals, parents, and the population in general (Autism Europe, 2023). To date, around 1% of the world's population have been diagnosed with autism (Sun et al, 2019; Zeidan et al, 2022). It is, however, reasonable to assume that the actual number of people with autism is higher, due to undiagnosed or misdiagnosed cases, especially among women (Lai and Baron-Cohen, 2015).
According to the World Health Organization (2022), autism spectrum disorder entails difficulties with social interaction and communication skills, certain behavioural patterns (eg repeating), need for fixed routines, focus on details and unusual reactions to sensations. Problems with social interaction might, for example, be manifested as difficulties in responding to others' emotions with facial expressions in line with the social norm (Weiss et al, 2019). Other symptoms are stilted or scripted speech, difficulties maintaining eye contact, and being extremely focused on special interests.
The level of functioning in daily life varies widely. Although some can live independently, others need regular support throughout their entire life. The level of functioning is connected to the level of intelligence (Harmsen, 2019), which varies from very low, ie having an intellectual disability, to very high. If the intelligence level is normal or high (American Psychiatric Association, 2021), the diagnoses ‘Asperger's syndrome’ or ‘high-functional autism’ are sometimes used (Hosseini and Molla, 2022). It is common for these people to obtain university degrees and to be employed (however, not as common as for neurotypical people) (Lorenz and Heinitz, 2014). Causes of autism spectrum disorder are primarily genetic and can be seen as abnormal brain structure (Harmsen, 2019). There is no cure (which may not be desirable either), but support such as occupational therapy or social skills training can be helpful (American Psychiatric Association, 2021). Those with more pronounced symptoms might be diagnosed in childhood, but among those with milder symptoms, many are not diagnosed until adulthood (World Health Organization, 2022), if ever.
Autism and work
People with autism are less often employed, but still form a significant proportion of the work force (Roux et al, 2013). Literature has summarised what kind of support people with autism need at their workplaces to function independently. For example, digital instructions and reminders, minimising distractions from others, a clear explanation from the employer about the workplace culture, predictable workdays and tolerance from co-workers, building on the person's interests and reducing social demands.
Nevertheless, employees with autism have described several strengths related to their autism that can be used at work. However, a recent review based on six articles (Bury et al, 2020) concluded that not much can be said about the work-related advantages of autism, due to the lack of research. Nevertheless, described strengths are, for example, high ability to concentrate on a task, honesty, trustworthiness, integrity, patience with repetitive tasks and higher work ethic. These studies are about work in general. Hence, it is not known which limitations and strengths may be present in the nursing profession, which is a complex occupation that requires being able to recognise the needs of others, understanding different situations, having frequent collaboration with others, and providing high-quality care with high ethical standards in a holistic manner.
Occupations that are commonly known to suit people with autism spectrum disorder are: assembly line manufacturing, computer programming or laboratory work. Occupations that require extensive social interaction, such as nurses, social workers or doctors, are seldom (if ever?) suggested for people with autism spectrum disorders in the literature. Nevertheless, a qualitative study among doctors explored the perceptions of receiving an autism diagnosis in adulthood and the challenges it entailed within medical training (Price et al, 2019). They describde autism-related difficulties at work, especially regarding social interactions and changing work tasks (flexible behaviour). They also described that they had ‘another way of thinking’ (note: not a worse way), which they saw as a strength. However, it remains unclear in which way this different thinking was perceived as a strength. People in general can probably picture a doctor with autism more easily than a nurse, since autism refers to brain function/theoretical skills.
In fact, genes for autism and genes for high intelligence have been seen to be related, and autism has been described as the ‘disorder of high intelligence’(Crespi, 2016). Several well-known ‘geniuses’, such as Albert Einstein and Isaac Newton, are believed to have had autism. Hence, we might more easily picture the ‘smart autistic doctor’ (a man), as it is regarded as a profession more associated with thinking (by tradition) than the nursing profession.
Autism and gender
For a long time, autism was considered a ‘male disorder’, but in recent years, it has become clearer that the symptoms of autism spectrum disorder differ between boys/men and girls/women, which may explain the underdiagnosis of girls/women (Harmsen, 2019). This challenges the common picture of a person with autism, shaped from research among boys/men. Perhaps this is one of the reasons why people in general have difficulties to imagine ‘the autistic nurse’ (nurses are most often women). Research among women and men with autism spectrum disorder without intellectual disability showed that women use camouflaging in social interactions to a larger extent than men. Camouflaging partly hides social interaction difficulties by, for example, imitating or mimicking others' behaviour (which requires a lot of cognitive effort and therefore easily becomes exhausting). Furthermore, girls/women with autism are more often interested in humans or animals than in objects or things, which makes their autism more difficult to recognise (Lai et al, 2015). Showing an interest in human beings is more in line with the social norm than showing an interest in, for example, train timetables or numbers. This means that girls more often receive their diagnosis late in life, ie in adulthood. It might be reasonable to assume that having a special interest in humans may cause the individual with autism to choose an occupation where he/she meets other people in some way, or at least, it is worth considering as a possibility. This might especially be the case if the person has an autism spectrum disorder but is unaware of it (undiagnosed) and therefore is free from prejudices about what jobs a person with autism can manage.
Autism and empathy
So, what about empathy? People with autism are often described as lacking in empathy, not only by the psychiatrist mentioned earlier in this article, but also in the scientific literature. In recent years, studies have shown that this might be a misconception. According to Fletcher-Watson and Bird (2020), the preconception about autism and lack of empathy says more about our ways of measuring empathy than about individuals with autism.
They mean that commonly used questionnaires for measuring empathy, eg the Empathizing Quotient, contain questions such as ‘Other people tell me I am good at understanding how they are feeling and what they are thinking’ and ‘If anyone asked me if I liked their haircut, I would reply truthfully, even if I didn't like it’. These kinds of questions refer rather to the expression of empathy in accordance with social norms, or to the level of skills in social interactions, than to the feeling of empathy. This might not be the correct measure of empathy among people with autism. In fact, people with autism have described that they can experience intense empathy, but express it differently than most people do (Fletcher-Watson and Bird, 2020). Harmsen (2019) showed similar results in a review, ie that it is the expression of empathy that is difficult for people with autism, not the feeling of empathy. Hence, a measure of empathy that distinguishes feelings from social skills and behaviour would be more accurate among people with an autism spectrum disorder. Moreover, Harmsen (2019) showed a complex picture of empathy among people with autism, iethat empathy increases with age, IQ (to a certain level) and may also be influenced by epigenetic factors.
Nurses with autism
Despite the fact that occupations that require social interactions are seldom believed to be suitable for people on the autism spectrum, studies (eg Bury et al, 2020) revealed that the single most common professions were health care and social assistance. It is also shown that students with autism study health and medicine sciences just as often as neurotypical students. This may indicate that we have an uninvestigated population which is likely to have unmet needs for support. Also, the motivational mechanisms behind the choice of profession are not in line with what is generally assumed for people with autism. The literature does not reveal much about autistic nurses. Searching ‘nurses’ and ‘autism/Asperger's syndrome’ in PubMed, CINAHL and PsychINFO resulted in rows of articles about caring for, or communicating with, people (often children) with autism spectrum disorder. But what if the nurse him/herself has autism?
Regarding this, the literature is extremely sparse. To find more information, I did also search in Google on the same search terms as in the databases. What I found was that in popular media and in the sparse existing research, there are few examples of nurses on the autism spectrum (Wallis, 2012; Centers for Disease Control and Prevention (CDC), 2019; Briefing, 2020; Sweetmore, 2021). Hence, we can for certain conclude that nurses with autism do exist. So what do we know about them? Well, both difficulties and strengths related to working as a nurse with autism spectrum disorder have been described. Difficulties were, for example, dealing with change (CDC, 2019), sounds from medical equipment, getting touched by other people, making phone calls (no facial expressions to look at makes communication and social interaction even more difficult) (Briefing, 2020). Moreover, Wallis (2012) described that some of her colleagues perceived her as a person with a bad attitude (when it really was about lack of communicative skills). A more severe difficulty that has been described is that instructions regarding how to handle equipment or certain situations are adapted for ‘neurotypical’ nurses, and can therefore be difficult to understand for a nurse on the autism spectrum, who might need more'step-by-step’ instructions. Wallis (2012) experienced that this can cause mistakes at work. Furthermore, Wallis (2012) experienced a lack of appropriate support from her employers regarding her autism-related needs. However, autism-related strengths at work as a nurse have also been mentioned, albeit in modest and brief terms. Examples of strengths are: heightened senses, which can enhance hearing, vision and touch (the latter can make assessment by skin palpation easier); an overwhelming sense of empathy and willingness to help (Briefing, 2020). Anita Lesko (CDC, 2019), a nurse anaesthetist, described that one unique advantage of her autism was a ‘laser focus’, ie the ability to stay focused and concentrated for very long periods of time. We can see that there is some information about nurses with autism, but almost exclusively in non-scientific contexts, making the phenomenon mostly shrouded in obscurity. My own experience of working as a nurse with autism is that it generally works just as well as for nurses without autism. However, I feel that it's more challenging for me than for most nurses to see the big picture in a situation because I often get focused on the (also important) details. Collaboration and teamwork have been the keys here. I believe that combining the qualities of different nurses/health care professionals provides a base for high-quality care, autism or not. One strength I relate to my autism is an unusually good memory for numbers, which is a big advantage when working as a nurse. Having the patient's birth date and phone number in your head instead of needing to look them up saves a lot of time!
Conclusion
A simple conclusion of the above is: nurses with autism do exist, but research about them does not. We have good reason to believe that there is a significant number of nurses with autism spectrum disorders in the world, both diagnosed and undiagnosed. Based on this, we should start from an exploratory point of view and by asking questions such as: How many nurses with autism spectrum disorder are there? What are their weaknesses and strengths at work? What support do they need at work? How can their abilities be used in the best way? Do they stay in the nursing profession, or do they leave because of unmet needs for support?
It is time to abandon the old view of high-functioning autism that is reserved for theoretically inclined men within medicine and science, and understand that it also includes theoretically and empathetically inclined nurses.
KEY POINTS
- Autism is a common neurodevelopmental disorder
- Many people with autism who are active in the labour market work within the health care sector, but it is not known how many of them are nurses
- Because autism is associated with lack of empathy, it can be difficult to imagine an autistic nurse
- There are only a few examples of nurses with autism in the literature and these mention several difficulties and unmet needs at work, but also strengths, related to the autism
- Raising awareness about nurses with autism is beneficial both for employers, the autistic nurses themselves, co-workers and patients. It is therefore time to start explorative research about nurses with autism
CPD reflective questions
- What would you think if one of your colleagues said that they have autism?
- How can different personal qualities be used in the best way in your workplace?
- Is there more than one way to express empathy?