Neurodiversity - What do we understand

Harish Vamadevan, May Edmondson, an unamed author and Suddhajit Sen

Harish Vamadevan is a medical student at St George’s Medical School, London.

May Edmondson is a medical student at St George’s Medical School, London.

This author, an SAS orthopaedic surgeon, wishes to remain anonymous in view of their neurodiverse condition.

Suddhajit Sen is a Consultant Orthopaedic Hand Surgeon and Honorary Senior Lecturer at Edge Hill University.

A personal account

Is it the stress of starting a new job, is it burnout from staying away from my family or is it the quiet desperation about my son’s future? Haunting questions, silent prayer and the dread of facing another day at work; my life was a groundhog day. My little boy has recently been diagnosed with autism and I’d started a new fellowship, staying away from home. My son displayed selective mutism, losing his voice completely in a new unfamiliar environment. I was experiencing the same helplessness at my workplace. Sometime back, my brother pointed out that my childhood idiosyncrasies had plenty of similarities with how my son behaves. To me, it was a feeble attempt to downplay or deny my son’s recent diagnosis of autism. However, now it seems to make sense. Despite my relative success in academics and career as an orthopaedic surgeon in the UK, I have always struggled with interpersonal communication, especially in a new place and in a new job. Some would even describe me as rude or aloof! My life has become a constant struggle to mask this unintentional aloofness. I desperately want to appear normal but I am exhausted trying to do so. Now I know that I am autistic too.

A bog-standard intra-capsular neck of femur fracture in a morning trauma meeting was another eye-opener for me. This patient was presented and the consensus was to perform a total hip replacement, following the NICE criteria. However, the presenting doctor mentioned that this patient was autistic. This changed the plan and the operating surgeon quickly switched to a hemiarthroplasty, having concerns about the patient’s cognitive abilities. To me, this is an example of discrimination stemming from ignorance. Our current understanding demands a thorough evaluation of this patient’s cognitive capacity and one must consider the burden of unfamiliar environmental stress in their judgement. The word autism must not be associated with a learning disability without an expert opinion. It is my ambition to bridge this gap in understanding and help autistic patients and colleagues to receive fair treatment.

Introduction

There is a poignant moment in the movie ‘Man of Steel (2013)’ showing a visibly disturbed young Clark Kent hiding in his school’s broom closet, eyes shut, ears covered. He was having a moment of unbearable sensory overload. His Kryptonian senses were awakened for the first time, and it was flooded with stimuli that others find harmless, causing a meltdown. However, neither his teacher nor his classmates had a clue.

Imagine this happening to you at work. Not once but most days and your colleagues or care providers don’t know what’s going on. Unfortunately, this is a real-life scenario for some of our colleagues or patients with autism spectrum disorder (ASD).

Having worked alongside some of them, I came to realise how little I understood their struggle or efforts to mask the apparent struggle. Spreading awareness will create a strong foundation of understanding, making our workspace more harmonious and inclusive.

In the movie, Clark needed to focus on his mother’s voice to settle down. It is a form of reassurance built on trust, understanding and acceptance. We hope to work on those similar principles to build support structures in the NHS for our patients and colleagues.

Terminology

In modern times, efforts to de-medicalise autism and related conditions have resulted in the concept of ‘neurodiversity’ which views autism and the unique features expressed by those affected as part of a kaleidoscope of different traits which exist as part of the normal variation of human neurology [1] as opposed to something which needs to be treated or fixed. This movement towards greater inclusivity is perhaps the reason ‘neurodiverse’ is often the preferred term amongst the autistic community [2] with the antonym ‘neurotypical’ being the preferred term over ‘normal’. Therefore, throughout this article, we will be using the term ‘neurodiverse’ interchangeably with ‘autistic’, however one must be aware that this is an umbrella term for a range of neurological presentations which vary from the ‘norm’.

Neurodiversity

Neurodiversity is a concept best explained as a difference in how all individuals explore, experience, and envision their environment. It describes how there is variation in how people think and learn and how differences in these processes do not necessarily mean a deficit [3]. Being neurodiverse includes having conditions such as ASD, ADHD, dyslexia, and Tourette’s syndrome [4] . ASD is a condition seen in all ethnic, racial, and economic groups [5] and it incorporates a range of neurodevelopmental disorders of varying severity. It is often characterised by difficulties in social communication and interaction, as well as repetitive and restrictive behaviours but can also stretch to over-or under- sensitivity to certain senses such as light perception [6].

increased, with figures starkly rising by 787% between 1998 and 2018 [7] . Not only has autism risen, but between 30-40% of our population is now thought to be neurodiverse [4], strengthening the argument that we must do more to help them overcome the barriers they face daily.

Figure 1: Graph showing the percentage increase in the incidence of autism from a baseline between the years 1998 and 2018.

Access denied: Barriers to healthcare faced by the autistic population

There is no doubt that the neurodiverse patient faces significant challenges when navigating the healthcare system, in addition to those

faced by the neurotypical population. Barriers to accessing the healthcare system include a variety of patient-level factors. For example, hypersensitivity to sensory stimuli can make the healthcare environment itself too overwhelming for the autistic patient to properly engage with the content of the consultation and impedes physical examination [8]. Moreover, distorted bodily awareness and difficulty in differentiating between physiological and pathological sensations has the potential to lead to late presentations and misdiagnosis [9]. There are also several systemic and provider-level factors at play, for instance, clinicians having a limited knowledge about autism and the lack of availability of formal and informal supporters [10].

The result, as demonstrated by a recent cross-sectional survey comparing self-reported healthcare experiences in autistic versus non-autistic adults, is significantly lower ratings of satisfaction with patient provider communication and unmet healthcare needs, as reported by autistic patients [11] and neurotypical doctors [12]. The overall impact of this discrepancy on measured clinical outcomes, particularly in primary care, is significant and concerning; for instance, autistic patients are half as likely to attend routine Papanicolaou ‘Pap’ smears [11], where delayed diagnosis can have potentially fatal consequences. Perhaps more worryingly, autistic individuals are twice as likely to attend A&E, compared to their neurotypical counterparts [11], demonstrating that we are failing to identify those at risk and intervene before their health declines. Therefore, improving the neurodiverse population’s access to healthcare should be made a priority.

Slipping through the net

There is a higher prevalence of mental illness amongst the autistic population, with up to 80% of those on the spectrum meeting the criteria for a co-morbid mental health disorder [13]. This may be in part due to social camouflaging or ‘masking’, a subconscious process whereby the neurodiverse individual attempts to monitor and modify their behaviour to fit in with others and adhere to the conventions of neurotypical society. It is hypothesised that the ability to mask in ‘high-functioning’ neurodiverse individuals contributes to the increased rates of mental health disorders in this group [14].

Alarmingly, the barriers to accessing good quality physical and mental healthcare for the autistic community outlined above means that neurodiverse individuals have an overall life-expectancy of 16-30 years less than neurotypicals [15]. This is in part due to the increased risk of suicide within the autistic community [16]. Moreover, those years are spent with significantly worse morbidity, poorer quality of life and contribute to an increased overall burden on the NHS [8].

Overcoming the hurdles

So, what can we do to stop autistic patients slipping through the cracks in the NHS? The first step is identifying the barriers faced by neurodiverse individuals in accessing healthcare, particularly in the primary care setting, as this is the first port of call for preventative medicine. In a recent online survey on autistic and non-autistic individuals following the Autscape conference, 80% of autistic individuals reported having difficulty visiting their GP, compared to only 37% of neurotypicals [8]. The top five barriers this population identified were:

• Deciding whether symptoms warranted a GP appointment (72%)

• Difficulty booking appointments via telephone (62%)

• Not feeling understood (56%)

• Difficulty communicating with their doctor (53%)

• The waiting room environment (51%) [8].

Besides the significant difference between the two populations reported, in the second aspect of this report you will notice that all the barriers identified by the autistic community are entirely preventable and amenable to reasonable adjustments [17]. For example, individual preferences as to the appointment modality must be respected. Some neurodiverse people find telephone appointments challenging as they rely on lip-reading and visual cues to engage in a conversation with their doctor, therefore they may require face-to-face appointments, something which has become an increasing challenge due to the COVID-19 pandemic, but something doctors should consider before implementing a ‘one-size-fits-all’ approach. Another reasonable adjustment could be offering quieter appointment slots to autistic patients, including early mornings and late evenings, when the surgery waiting rooms will be less busy, or allowing the patient to wait outside the surgery until their allocated appointment time, if they find the environment itself too overwhelming. These are just a few examples, however there is no reason to say that with adequate training of GPs and reception staff, reasonable adjustments and, more broadly, having an open mind and flexible approach, all these hurdles could be overcome. As Dr Doherty herself states, “adjustments for autism-specific needs are as necessary as ramps for wheelchair users” [8].

Stigma and the challenges of misconceptions

In present times, many efforts have been made to move toward celebrating neurocognitive variation but still, some stigma remains. Healthcare is a vocation that requires great social communication skills and empathy, and one example of such stigma would be that autistic individuals lack these traits.

The theory of mind is the ability to recognise that one’s mental state may differ from another’s [18] and it is, therefore, crucial in understanding and predicting someone’s behaviour. Deficits in the theory of mind are thought to be prevalent in the autistic individual [19], leading to a common misconception that these individuals cannot be empathetic.

This is described in the mind-blindness theory. Essentially, when a neurotypical person ‘mindreads’, or mentalises, we not only make sense of another person’s behaviour, but we also imagine a whole set of mental states and we can predict what they may do next [20]. For example, when witnessing a pedestrian walking along the road, we may think “Why did they turn their head and look right?”, we may imagine that they have seen something of interest or they may want something in that direction, and we can predict that they may move in that direction next. The mind-blindness theory proposes that autistic individuals are “delayed in the development of their theory of mind, leaving them with degrees of mind-blindness” [20] . Evidence for this theory includes studies that have determined that a neurotypical nine-year old can identify what things may hurt another person’s feelings and can choose to not say/ do these things whereas children with autism are delayed in this skill by three years [21] as well as a study that found that neurotypical nine-year-olds can read another person’s facial expressions from just their eyes, to find what they may be feeling whereas autistic children found this more difficult [22].

However, the underlying neurocognitive mechanisms of the absence of empathy remain controversial. A study has compared the mind-blindness theory with the intense world theory. “The mind-blindness hypothesis suggests that social difficulties in individuals with autistic traits are caused by empathy impairment in individuals; however, the intense world theory suggests that these social difficulties are caused by sensory hyperreactivity and sensory overload, rather than empathy impairment” [23]. The study supported the intense world theory more strongly than the mind-blindness theory, concluding that a few parts of the brain (e.g., the prefrontal cortex, sensory cortex, and amygdala) are overactive, thus intensifying their sensory experience. This may induce a state of anxiety for the individual, but it demolishes the idea that autistic individuals are not inherently empathic.

Due to the stigma placed upon autistic individuals, they are more likely to struggle with their mental health and are more likely to have lower self-worth [24]. “Doctors already are known to struggle with their mental health with suicide risk among doctors said to be between five and seven times that of the general population” [25]. This paired with the challenges of stigmatisation, may prove to be difficult to deal with, fortifying the need for correct support for our doctors.

No longer overlooked? Support available for autistic doctors

The General Medical Council (GMC) states in its recent guidance, Welcomed and Valued, that “No health condition or disability by virtue of its diagnosis automatically prohibits an individual from studying or practising medicine.” [26]

Earlier, we discussed how neurodiverse individuals tend to ‘mask’, meaning their struggles may often go ‘under the radar’ until the external demands placed on them exceed their internal resources and ability to cope, often resulting in meltdown [27]. However, building on legislation in The Equality Act (2010), the GMC document outlines how medical schools and deaneries must ensure all reasonable adjustments, for example, allowing a trainee surgeon to remain with the same consultant to reduce anxiety over change [28], are considered on a case-by-case basis to provide adequate support for an individual and avoid discrimination [26]. The above article by Dr Doherty highlights how important it is to consider each individual with autism and the support they require as an individual, instead of addressing a population featuring a diverse spectrum of neurodivergent traits with a blanket, one-size-fits-all approach.

Moreover, organisations such as Autistic Doctors International (ADI), an information and peer support group founded in 2019 [28], are vital for raising awareness and challenging the misconception that autism is incompatible with a medical career, as well as confronting ableism and unconscious bias in the medical profession head-on. ADI and its members argue that with early recognition, reasonable adjustments and appropriate support from seniors and colleagues, autistic doctors can be incredible assets in any area of medicine [27].

Autistic doctors for autistic patients: A potential solution for the ‘double-empathy’ problem?

The concept of the ‘double-empathy problem’ in autism has been posited in the last decade as a possible explanation for the observed difficulties in communication encountered between those on the autistic spectrum and non-autistic individuals. The ‘double empathy problem’ refers to the disparity in reciprocity between two socially distinct individuals, with ‘different dispositional outlooks and personal conceptual understandings when attempts are made to communicate meaning’, something which is particularly marked between neurodiverse and neurotypical people [29]. One potential solution to this disparity is acknowledging the well-established research demonstrating that people with ASD are better able to communicate with other neurodiverse individuals [30], compared to their neurotypical counterparts.

There is no doubt that effective patient-doctor communication is essential to medical practice. Simultaneously, it is recognised that individuals with ASD have difficulty communicating with healthcare professionals, with 53% of those in the above study identifying communication with their physician as a barrier to accessing primary care [8]. This presents a serious challenge to healthcare providers, particularly since, as we have already found out, autistic individuals have a greater incidence of co-morbid physical and mental health conditions compared to the general population [31].

Therefore, one potential solution, is acknowledging the role of neurodiverse doctors in the NHS and utilising them in consultations with autistic individuals wherever possible. The result would be improved doctor-patient rapport as, anecdotally, patient-doctor communication is enhanced between autistic doctors and autistic patients [28]. This has implications, not only for increased patient satisfaction, but also, since improved healthcare provider-patient communication has been associated with better adherence to treatment regimens [32], significantly better health outcomes. Autistic doctors represent about 1% of the NHS medical workforce [33], which mirrors the figure on the general adult population of 1.1% [34] , so where are all of these neurodiverse doctors hiding? Popular media would have us believe that autistic doctors prefer non-patient facing roles such as pathology and laboratory work, however this is in fact a myth. On the contrary, General Practice is the most represented specialty of doctors registered with the Autistic Doctors International [28], perhaps due to the ability of autistic individuals to memorise vast quantities of information [35] which would no doubt lend itself to a field of medicine such as primary care where any part of the body can be affected, and an even broader range of diseases and injuries can present. Moreover, GPs have significant patient contact time and are the first port of call for referrals and therefore effective doctor-patient communication in the primary care setting in has wide-reaching implications for long-term physical and mental health. In conclusion, autistic doctors have a significant role to play in improving the healthcare outcomes of this greatly overlooked population.

Myths, misconceptions and real life problems

• Autism is not a childhood problem. It is a lifelong developmental disability affecting how an individual communicates and interacts with the world. Most adults learn how to mask this apparent disability.

• Spectrum of autism is not one-dimensional, i.e. from low functioning to high functioning. This spectrum is multi-dimensional involving executive function, language development, motor skills, sensory perception and many other modalities.

• Every autistic individual is unique. It’s said, “If you have met one autistic person, you have met one autistic person.”

• Prevalence of ASD is higher in men. However, it is not uncommon in women. Women may be more adept in masking.

• Masking is an emotionally exhausting phenomenon. It can lead to autistic burnout.

• Only 22% of autistic adults are employed according to the census data from 2021.

This rate is the lowest among all the adults with disabilities [36].

• Autistic adults face difficulties in the unstructured, unpredictable or in some other way confusing interactions with colleagues or organisational hierarchy.

• Speaking truth to power comes naturally to an autistic adult. They may come across as confrontational or arrogant.

Conclusion

The British Orthopaedic Association upholds the values of equality, diversity and acceptance. Equality without equity is an empty promise. Knowing all lives matter is equality, providing all with a proportional opportunity to flourish is equity. Equity demands acceptance of difference and a fairness to provide proportional resources to mitigate the differences. Our understanding of ASD is evolving rapidly. However, it is fair to comment that there is very little support available to help colleagues and patients with this condition. The facts and arguments presented in this article challenge some misconceptions and recommend a support structure within the NHS for ASD. We hope to start the conversation with the ideas suggested in this article. •

References

References can be found online at www.boa.ac.uk/publications/JTO.