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• To enhance your understanding of neurodivergence
• To recognise the need to reframe behaviours that challenge as expressions of distress or unmet needs
• To contribute towards revalidation as part of your 35 hours of CPD (UK readers)
• To contribute towards your professional development and local registration renewal requirements (non-UK readers)
People who are neurodivergent, including autistic people, may perceive the world differently from neurotypical people. At times, this can prompt them to demonstrate so-called ‘behaviour that challenges’, which may be better termed ‘distressed behaviour’. Distressed behaviour can occur for several reasons, from processing information to feeling unwell, tired or hungry. Some people with learning disabilities are autistic and this may increase the likelihood that they will demonstrate distressed behaviour. It is crucial that healthcare professionals who work with people with learning disabilities understand neurodivergence and are equipped to respond effectively to distressed behaviour in neurodivergent service users.
This article supports these healthcare professionals to improve the quality of life of service users and those around them by understanding neurodivergence better and developing appropriate strategies for responding to distressed behaviour.
Learning Disability Practice. doi: 10.7748/ldp.2023.e2227Peer review
This article has been subject to external double-blind peer review and checked for plagiarism using automated software
Udonsi P (2023) Responding to distressed behaviour at the intersection of learning disability and neurodivergence. Learning Disability Practice. doi: 10.7748/ldp.2023.e2227
Published online: 23 October 2023
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:
• Explain the origins and principles of neurodivergence theory.
• Outline physiological differences in neurological functioning between neurotypical and neurodivergent people.
• List strategies for responding to distressed behaviour in service users.
• Describe different support plans that can be implemented to prevent or reduce distressed behaviour among service users.
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.
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).
• About one in ten people in the UK are neurodivergent
• Neurotypically designed health services may incorrectly assess neurodivergent people’s behaviours as challenging
• Distressed behaviours are often an expression of neurodivergent people’s response to environments designed for neurotypical people
• Understanding the function of distressed behaviour helps to create more inclusive and supportive environments for neurodivergent people with learning disabilities
• Healthcare professionals can use various strategies to try to prevent or respond to distressed behaviour in neurodivergent people with learning disabilities
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’.
Read about people’s lived experiences of restraint, seclusion and segregation in this report produced by the advocacy service Advonet and the mental health charity Change: www.cqc.org.uk/sites/default/files/20201021_rssreview_livedex.pdf What do you find concerning about the use of restraint, seclusion and segregation? What actions do you think services should take to prevent their use?
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).
Watch this YouTube video about how grief affects the brain: www.youtube.com/watch?v=eEcaUhxAH2g then reflect on Charlie’s case study. What signs of distress does Charlie show? What would be the starting point of your functional assessment of Charlie? How would you support him? Are there services in your local area that could help Charlie?
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.
• Implementing person-centred approaches to ensure care and support are tailored to each person’s abilities, needs and wishes
• Assessing people and implementing relevant support plans, for example a positive behaviour support plan, a sensory integration support plan and/or a communication support plan
• Implementing a total communication approach
• Creating accessible, sensory-friendly and inclusive environments
• Being aware of and respecting people’s personal space needs
• Using psychological therapy
• Using neurodivergence-informed therapy
• Implementing trauma-informed practice
• Working with intersectionality in mind
• Nominating a neurodiversity and inclusion champion within the team
• Training staff on neurodiversity and inclusion
• Educating families and carers about neurodiversity, including sensory and/or information processing differences
In your experience, what do people with learning disabilities who are neurodivergent tend to find challenging about their environment? What do you think are the resource implications of creating a care environment that is accessible, sensory-friendly and inclusive?
Charlie, 19 years old, is autistic and has a learning disability. He lives with two co-tenants in a supported living house, where a team works shifts to ensure there is always one support worker present. Charlie attends a local college where he is doing an information technology course.
Charlie has recently started refusing to go to college. He spends most of his time at home with no structure to his day. He does not go out often because whenever his support workers take him out, he tries to run away from them. The support worker team reports that he has been throwing and breaking objects, hitting, kicking and attempting to choke staff. When he displays such behaviours, staff direct him to his bedroom. Consequently, Charlie is becoming more isolated.
It is suspected that Charlie’s behaviour is partly due to loss and grief. Six months ago, one of Charlie’s classmates died following an epileptic seizure. Recently, Charlie has been told that his grandfather, with whom he has a close relationship, has cancer and can no longer do activities with him. It also appears that Charlie is re-enacting a scene from a film he saw a few years ago when he attempts to choke his support workers. The film had a death-related theme and it is believed that Charlie is distressed by his memories of some of the images in the film.
Charlie needs support to understand the loss and grief he is experiencing and would probably benefit from a total communication approach (Sense 2023).
Positive behaviour support (PBS) aims to develop an understanding of the reason(s) for distressed behaviour so that the person’s needs can be better met (British Institute of Learning Disabilities 2017). PBS seeks to improve people’s quality of life, with accompanying reductions in the use of restrictive practices and medicines (Gore et al 2022). It also aims to reduce the likelihood of distressed behaviour occurring by creating supportive physical and social environments.
PBS begins with conducting a functional assessment of the person to understand why the behaviour occurs. A PBS plan is then coproduced and implemented. The PBS plan will include proactive and preventive interventions, teaching of new skills and potential strategies to avert crises and keep people safe. If these strategies involve the use of restrictive practices, these must be the least restrictive possible and there must be a plan to reduce their use (British Institute of Learning Disabilities 2017).
When people with learning disabilities who are neurodivergent express emotions, such as anger or fear, it is important to remember that these may have been triggered by a physiological response to perceived danger (Sapolsky 2017), even in the absence of actual danger. Distressed behaviour can be the product of a nervous system doing what it is designed to do in a person whose neurological functioning diverges from what is accepted as the norm. It is important that people are assessed for sensory integration issues and that a sensory integration support plan is put in place if needed (Boucher 2022).
For example, a person who is hyposensitive to smells may not notice unpleasant odours and may benefit from interventions that mitigate their under-responsiveness by stimulating their olfactory sense. Their sensory integration support plan could include activities such as cooking foods with strong smells or using scented candles, lotions, soaps, markers or stickers. A person who is hyposensitive to touch may engage in self-harming behaviours such as hair pulling, scratching or cutting their nails too short. Their sensory integration support plan could include a tactile sensory bag with a selection of items that they could always carry with them, having a hand or foot massage or using a weighted blanket.
People with learning disabilities may have significant challenges with expressive and receptive communication skills (Sense 2023). Some autistic people may also have communication differences, particularly in terms of social communication and interaction (Noens and van Berckelaer-Onnes 2004). As noted by Bogdashina (2010), some autistic people do not communicate in conventional ways but may use sensory-based languages – visual, tactile, kinaesthetic, auditory, olfactive or gustatory. People with learning disabilities who are autistic may experience challenges related to a co-occurrence of social interaction and communication issues (American Psychiatric Association 2022).
Responding to distressed behaviour in people with learning disabilities who are neurodivergent may include co-creating and implementing a communication support plan that explains how the person prefers to communicate and the tools that can support them to communicate. There is a range of tools for people who do not communicate verbally or whose verbal communication is limited, from simple letter or picture boards to sophisticated computer-based systems (Communication Matters 2023). Examples include Makaton (www.makaton.org), Signalong (www.signalong.org.uk), Talking Mats (www.talkingmats.com), Widgit symbols (widgit.com) and the Picture Exchange Communication System (PECS) (pecs-unitedkingdom.com/pecs/).
A total communication approach involves using a combination of person-centred communication methods which support the person to form connections and enable meaningful interactions between them and those around them (Sense 2023). It is about finding and using the combination of communication methods that is right for the person. Total communication is also about creating an environment conducive to communication which may involve, for example, dimming the lighting in the room, reducing the amount of background noise, reducing clutter or removing objects that are distracting (Sense 2023).
The triggers for distressed behaviour in neurodivergent people may be located in environments that are not adapted, not inclusive and/or are disabling. Services are not always designed to suit the needs of the people they are set up to help. Hospitals, for example, are rarely conceived with the needs of neurodivergent people in mind (Care Quality Commission 2022). The British Standards Institution (BSI) (2022) has published a guide for the re-design of the built environment to make it more inclusive of neurodivergent people. The guide covers elements such as lighting, acoustics, décor, flooring, layout, wayfinding, familiarity, clarity, thermal comfort and odour in buildings and external spaces for public and commercial use and in independent or supported residential accommodation (BSI 2022).
Designing accessible, sensory-friendly and inclusive environments, or redeveloping environments to make them more accessible, sensory-friendly and inclusive, is often a long-term strategy that requires: securing commitment from decision-makers; working with people who have lived experience of neurodivergence and learning disability to understand their needs; and recruiting people experienced in designing inclusive environments, for example in hospitals, GP practices, community spaces and residential facilities. A space hosting clinic for people with learning disabilities who are neurodivergent needs to be adapted to accommodate diverse sensory needs – for example, it will need quiet areas for people who are hypersensitive to noise and a soundproof room in which people who are hyposensitive to sound can have sufficient auditory stimulation.
Anthropological studies have advanced knowledge about proxemics – that is, how humans apprehend and use the space immediately around them and the effects of population density on behaviour, communication and social interaction (Brown 2001, BSI 2022). The concept of proxemics was developed by the American anthropologist Edward T Hall, who suggested that a generic person has the following perceptions of the space around them (Brown 2001):
• Intimate space – close to the body.
• Personal space – within 0.45m of the person.
• Social space – within 1.2m of the person.
• Public space – within between 3.6m and 7.6m of the person.
People’s space requirements vary according to cultural norms and neurological functioning (Brown 2001, BSI 2022). When a person is not afforded the personal or social space they need, they can become anxious. In neurodivergent people this may result in heightened levels of anxiety or distress (BSI 2022). Overlooking a person’s personal space requirements is one factor that can trigger distressed behaviour, so healthcare professionals need to be aware of and respect people’s personal space needs (Gessaroli et al 2013).
Are you aware of your own personal space needs? How do you react when someone comes too close to you for your liking? Now reflect on how you work with service users. Do you try to find out about their personal space needs and if so, how do you go about it? How often do you come into service users’ intimate or personal space and what effects does this have on them?
The pioneering work of psychotherapist Valerie Sinason (Galton 2018) demonstrated that cognitive and social impairments in people with learning disabilities do not hinder them from developing in their linguistic and emotional functioning following psychoanalytic psychotherapy. The possibility of using psychological therapy to support people with learning disabilities who are neurodivergent should be considered.
To provide effective therapy for this population, it may be necessary to adapt therapy models and introduce reasonable adjustments, since people with learning disabilities may not be eligible for therapy if traditional models and methods of delivery are strictly adhered to (Royal College of Psychiatrists 2004).
Neurodivergence-informed therapy emerged in response to the call for creating spaces that acknowledge neurodiversity (Chapman and Botha 2023). This type of therapy can contribute to how healthcare professionals understand and address manifestations of distress in people with learning disabilities who are neurodivergent. Further research into the effects of neurodiversity-informed therapy on people with learning disabilities who are neurodivergent is needed.
Some people with learning disabilities who are neurodivergent have had traumatic experiences – for example, of physical restraint or isolation – so it is important that healthcare professionals work, and that healthcare services are conceived and delivered, according to the principles of trauma-informed practice (Rajaraman et al 2022). Trauma-informed practice is about recognising and addressing the obstacles that people affected by trauma may encounter when seeking care and support (Wall et al 2016). By acknowledging these obstacles, trauma-informed practice creates an environment that fosters accessible, non-discriminatory and effective care.
Intersectionality can be described as a theory for examining how different forms of oppression – such as ageism, racism, sexism, ableism, heterosexism or classism – interact to influence people’s lived experiences (Bernard 2020). Intersectionality posits that people may be affected by intersecting sources of discrimination or privilege based on social factors such as age, ethnicity, gender, sexuality, class, disability and so on. A neurodivergent person with a learning disability may face discrimination from their experiences of learning disability, neurodivergence and any of their social characteristics.
When responding to distressed behaviour, healthcare professionals need to be aware that every person has multiple social identities that affect the ways in which they experience care (Bernard 2020) and should work in a non-discriminatory manner. This involves acknowledging people with learning disabilities who are neurodivergent as a marginalised group that may at times be deprived of the resources they need to participate fully as citizens in their communities (Thompson 2020).
Which of the strategies described in the article could be implemented in your organisation? Who could you speak to if you wanted your organisation to become better at responding to distressed behaviour among service users? What could you do to become a social justice advocate for people with learning disabilities who are neurodivergent?
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.
Identify how responding to distressed behaviour at the intersection of learning disability and neurodivergence applies to your practice and the requirements of your regulatory body
Now that you have completed the article, reflect on your practice in this area and consider writing a reflective account. See: rcni.com/reflective-account
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