Aim and intended learning outcomes

The aim of this article is to support healthcare professionals who work with people with learning disabilities to understand neurodivergence and develop strategies to respond to distressed behaviour in service users who are neurodivergent. After reading this article and completing the time out activities you should be able to:

In 2020-2021 in England, among people with learning disabilities on their GP’s learning disability register, 28.6% were autistic, which represented an increase of 8.8 percentage points from 19.8% in 2016-2017 (NHS Digital 2021). This could indicate either an increase in the co-occurrence of learning disability and autism or an increase in detection rates – or both. Healthcare professionals who work with people with learning disabilities should therefore consider the possibility of autism in their assessment and intervention strategies.

Statistics in England for 2020-2021 show that autistic people with a learning disability were 66 times more likely to have been prescribed antipsychotics and benzodiazepines than autistic people who did not have a learning disability (NHS Digital 2021). This highlights the challenges that healthcare professionals encounter in maintaining the mental well-being of autistic people with a learning disability but could also indicate that their ‘behaviours’ are misinterpreted and over-medicalised.

Autism is increasingly seen as a form of neurodivergence. In recent years, social justice advocates have campaigned for a move away from a pathological paradigm where manifestations of neurodivergence, such as autism and attention deficit hyperactivity disorder (ADHD), are treated as behavioural disorders that require prevention, remediation or a cure. There have been calls to recognise that cognitive or communicative ‘dysfunctions’ in neurodivergent people are not necessarily inherent but occur as a result of their interactions with neurotypical environments (Chapman and Botha 2023). There has also been a drive to deliver therapy that takes account of neurodivergent perspectives and acknowledges that disability is shaped by social, environmental and political factors (Chapman and Botha 2023).

The term ‘neurodiversity’ was first used by the Australian sociologist Judy Singer (Singer 1998). Exponents of neurodiversity include people who are influenced by the social model of disability (Riddle 2020), such as Temple Grandin (Jurecic 2007) and Jim Sinclair (Pripas-Kapit 2020). Neurodiversity theory builds on the idea of biodiversity to suggest that society is enriched by the unique characteristics of autistic people or those with dyslexia, for example (Doyle 2020).

Recognising and accepting the idea of neurodiversity leads to a move away from considering autism, for example, as requiring treatment (Kapp et al 2013). In the UK, the National Strategy for Autistic Children, Young People and Adults (HM Government 2021) emphasises increasing neurodiversity awareness, understanding and training in government departments and in public bodies in areas such as healthcare, education and the criminal justice system.

Physiology of neurodiversity

A person’s neurological functioning is shaped by factors such as genetic expression, upbringing, cultural background, social circles, daily life experiences and interactions with others. These factors imprint themselves onto the nervous system and combine to define the person’s identity and delimit their capacity to adapt to their environment (Eagleman 2015). According to neurodiversity theory, every person exists on a spectrum between ‘neurotypical’ functioning and ‘neurodivergent’ functioning (Morrison 2019). Furthermore, within this theory autism, ADHD, developmental coordination disorder, dyslexia, dyspraxia or Tourette’s syndrome, for example, are considered natural variations of the way in which the human mind functions (Chapman and Botha 2023).

People who diverge from what is considered ‘typical’ neurological functioning are referred to as ‘neurodivergent’ (Chapman and Botha 2023) and people who have ‘typical’ neurological functioning are referred to as ‘neurotypical’ (Morrison 2019). However, within this theory, as explained earlier, every person is situated somewhere along a broad spectrum encompassing every nuance of neurological functioning (Morrison 2019). The National Strategy for Autistic Children, Young People and Adults (HM Government 2021) estimates that about one in ten people in the UK are neurodivergent.

Autistic people tend to perceive their surroundings differently from neurotypical people. For example, they may receive incoming sensory information without filtering or selection (Bogdashina 2010) and may therefore find it challenging to differentiate between foreground and background information. Some autistic people perceive their surroundings holistically as one unified entity and yet simultaneously apprehend every detail of their surroundings separately; this has been described as ‘Gestalt perception’ (Bogdashina 2010, 2014). The abundance of unfiltered information can result in sensory overload, fragmented perception, delayed processing, distortions of reality and limited peripheral awareness (Boucher 2022), which, in turn, can result in autistic people becoming frustrated and distressed. The way some autistic people then express their frustration and distress may be challenging for their family and carers.

Throughout the day, the human brain receives a multitude of stimuli via the visual, auditory, tactile, olfactive, gustatory and proprioceptive senses (Boucher 2022). The brain of a neurotypical person filters out background ‘noise’ – information that does not warrant particular attention – but the brain of a neurodivergent person may not do so. For neurodivergent people, sensory experiences may be overwhelming and sensory stimuli may be perceived as threats (Boucher 2022). As a result, the sympathetic nervous system is activated, adrenaline (epinephrine) is secreted and the body goes into fight, flight, freeze or fawn mode – its normal physiological response to perceived danger (Sapolsky 2017). In neurodivergent people, seemingly innocuous sensations – such as the noise of children playing outside, the sensation of cloth against one’s skin or the taste of certain foods – can trigger what has been referred to as behaviour that challenges, and what the National Autistic Society (2020) calls ‘distressed behaviour’.

Function of distressed behaviour

Some people with learning disabilities interact with their environment in ways that are not considered socially acceptable and demonstrate distressed behaviours. They may do so to a greater extent if they are neurodivergent, for example if they are autistic (National Institute for Health and Care Excellence (NICE) 2015).

Wendy Lawson was found to be autistic at the age of 42 years, having been previously misdiagnosed with schizophrenia. Wendy shared her lived experience of being neurodivergent as follows (Lawson 2000):

‘I think I knew I was different, but I didn’t know why. My world was a rich one, full of colour and music that seemed to splash over and around me wherever I walked. I thought everyone saw things the same way I did, but my behaviour seemed to make people angry or cause them to distance themselves from me.’

Wendy’s behaviours may well have been perceived by others as ‘challenging’. Behaviours are often deemed challenging when they are socially or culturally undesirable (Emerson and Einfeld 2011). Behaviour that challenges has been defined by Emerson and Einfeld (2011) as either increasing the risk of harm to oneself and/or to others or as negatively affecting quality of life – the person’s quality of life and/or that of people around them. Such behaviour may be expressed through internalising behaviours (such as anxiety, withdrawal, depression or self-isolation) or externalising behaviours (such as screaming, hitting or kicking). For behaviours to be qualified as ‘challenging’, their intensity, frequency and/or duration must be significant enough to cause harm or be detrimental to the person and/or the people around them (Wolkorte et al 2019).

Gore et al (2022) pointed out that neurotypically designed health services may, at times, incorrectly assess the behaviours of neurodivergent people as challenging and cautioned against interventions that seek to make neurodivergent people conform to neurotypical preferences. It is important to recognise that such behaviours are often a means for neurodivergent people to communicate the distress they experience in environments suited to neurotypical people.

Distressed behaviour in people with learning disabilities is often an expression of unmet need (NICE 2015). In autistic people distressed behaviour also has a function (National Autistic Society 2020), for example to express difficulty with processing information or coping with unstructured time, sensory overload, a change in routine or transition between activities, or feeling unwell, tired or hungry – or a mix of all of these. Being unable to communicate these difficulties, for whatever reason, can lead to anxiety, anger and frustration (National Autistic Society 2020). It is therefore crucial to determine the function of distressed behaviour. However, doing so may be challenging in a neurodivergent person because of the person’s way of perceiving the world and potential communication difficulties (Boucher 2022).

The fictional case study of Charlie demonstrates how an autistic person who also has a learning disability may respond to their experiences and environment in a way that may be harmful to them and perceived by others as threatening and develop behaviour that is an expression of deep emotional distress linked to death, loss and grief (Case study 1).

Responding to distressed behaviour

There are several strategies healthcare professionals can use to respond to distressed behaviour and reduce its likelihood in people with learning disabilities who are neurodivergent. Box 1 features a selection of suggested strategies. The following sections provide further details about some of these strategies.

Conclusion

People with learning disabilities who are neurodivergent may express unmet needs, distress, anxiety, anger and frustration through distressed behaviour. Forms of neurodivergence such as autism mean that the person’s neurological functioning and the way they perceive their environment may differ from what is considered the norm. Therefore, distressed behaviour in people with learning disabilities who are neurodivergent can stem from their interactions with environments that are not accessible, not inclusive or not sensory-friendly.

Understanding the underlying reasons for distressed behaviour is the first step towards creating more inclusive and supportive environments for people with learning disabilities who are neurodivergent. Further research is required into effective interventions to respond to distressed behaviour at the intersection of learning disability and neurodivergence.