Living with behaviour that challenges

Last modified: February 28, 2019
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What is Challenging Behaviour?

As set out on page 14 of Challenging Behaviour: A Unified Approach, Royal College of Psychiatrists et al (2007), challenging behaviour is defined as behaviour ‘of such an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others, and is likely to lead to responses that are restrictive, aversive or result in exclusion.’ You can find the full reference at: https://www.rcpsych.ac.uk/usefulresources/publications/collegereports/cr/cr144.aspx.

Examples of challenging behaviour include: hitting, kicking, spitting, throwing things, self-harming, self-injury, biting, scratching, trichotillomania (pulling hair out), damaging the environment or clothing, screaming, pica (eating non-food items) and smearing.

You can find more information on challenging behaviour at: https://www.challengingbehaviour.org.uk/about-us/what-is-c-b/what-is-challenging-behaviour.html.

Please note: The term ‘challenging behaviour’ here is not intended as a diagnosis or label used to describe people who display it, but rather to describe the effect of the behaviour on those around the person, as it is them who are ‘challenged’ by the behaviour.

Causes of challenging behaviour

The root causes of challenging behaviour can be physical, emotional or social, and will likely be the result of an unmet need. All behaviour is a form of communication, and all behaviour has a reason and/or purpose. For those living with a learning disability, autism or both, difficulties in understanding and using language can make it difficult to communicate needs effectively (e.g. hunger, thirst, discomfort or pain). It is likely that they have learned over time that, as their behaviour often gets an instant reaction, it is a useful communication technique to use to get noticed and gain some control over their situation.

Challenging behaviour can be caused by any number of things for what may seem to us the smallest of reasons, but for the person may be very hard for some to cope with, for example: 

  • changes in routine or to the environment (even something that may seem very subtle to others);
  • sensory issues, which can be particularly overloading for people with autism because of sensory processing differences (e.g. pain, distress caused by loud noise, the light touch of clothes labels in clothes);
  • differences in understanding and getting on with others (i.e. the social communication difficulties diagnosed in autism) and differences in thinking flexibly (e.g. social imagination difficulties characteristic of autism);
  • sensitivity to the moods of people around them, difficulties trying to communicate health needs (hunger, thirst, pain or discomfort; and
  • significant life changes or transitions concerning family or home life (e.g. puberty, transition to adult services, death of a loved one or moving home).

The consequent increase in anxiety, confusion or discomfort can result in challenging behaviour that requires others to identify then reduce or remove the cause(s) of the distress. 

While some behaviour may be seen regularly, a sudden change could indicate something serious, such as an undiagnosed health problem in need of some timely attention. Although it could just be a minor tummy upset or a developing cold, it could also indicate more significant or fluctuating pain and infection (e.g. earache, toothache, constipation) or even something more serious. If there is any doubt, call your GP. Other examples of health-related issues that can impact upon behaviour include: epilepsy, vision and hearing impairments, the side effects of medication, allergies, and mental health illness. 

Please note: There is a wealth of evidence that people with learning disabilities often have unmet health needs, so it is always recommended to think health first when a person is showing behaviours or distress.

What causes a crisis?

Many families who care for loved ones with complex and sometimes challenging needs can find things tough at the best of times.  It does not take much for things to start falling apart if families are not getting the advice and support they need, or if there is a sudden upsurge in behaviour for whatever reason. Caring for someone with high needs can also be exhausting and affect mood and wellbeing, which can result in your own health being affected.  We hear from many families who suffer from anxiety, depression and lack of sleep.  You can see our report on Parent Carer health at http://bringingustogether.org.uk/wp-content/uploads/2018/05/Parent-Carer-Health-final.pdf

Whatever the reason for challenging behaviour, it is vital for the individual, and those around them, that their needs are understood and addressed. All behaviour has a function and a trigger. Careful analysis can often reveal what is going on to better understand what the person is trying to tell us and then use what we learn to modify our approach to make a difference. It is not just about being right or wrong.

Assessment and support

The most important aim is to improve the quality of life of the person whose behaviour may be challenging others. To help achieve this, an approach called Positive Behaviour Support (PBS) can be used to undertake a comprehensive review of the behaviour. The review will look at what the function of the behaviour is, what it is communicating and how to make adjustments or teach skills the person might need to help them manage the challenge they are facing.  This is recorded in their person’s PBS Plan, which can then be used by carers and supporters to better meet the needs of the person on a daily basis to prevent or reduce challenging behaviours.

The PBS review will also look at health, psychological or psychiatric factors, communication, social or environmental issues to gain knowledge and insight about the person’s background, and support needs. As already mentioned, a sudden change in behaviour could indicate a significant health issue, so your loved one’s GP should be one of the first involved. Health needs must be properly assessed and managed.

It is important for you to share any information you have for your loved one (e.g. a medical history, diagnoses, developmental and emotional difficulties, language development and any sensory challenges), with consent if needed. Your GP can assist if you need advice and may offer to refer you to the local Community Learning Disability Team (CLDT). If you haven’t got them on speed dial already!

You may have support documents, such as a Communication Passport, details of medication, a health action plan, nursing assessments, occupational therapy and speech and language reports. These are useful in reviewing your loved one’s personal profile and background, in order to rule out all health or physical causes for the behaviour. Your GP or the CLDT can help you obtain and/or develop these.

A clinical psychologist or behaviour specialist may be asked to conduct an in-depth review using the information provided and by talking to those who know the person the best. They will then undertake a detailed functional assessment of behaviour, considering underlying medical and organic factors, psychological/ psychiatric factors, communication and social/environmental factors, which should lead to a clear understanding of the behaviours of concern. A PBS Plan is then produced, which identifies each behaviour and states the proactive and reactive strategies necessary to understand and reduce the specific behaviour. The aim is to develop alternative ways of meeting needs to avoid the person resorting to challenging behaviour.

All strategies should be based upon the least restrictive principles in relation to managing risk. Regular reviews, good communication and sharing of information between professionals, your loved one and their family are vital to make the PBS plan work effectively. 

Please note: Never forget, you cannot do it all by yourself! As a carer, you are entitled to an assessment of your needs too. If you are overtired and struggling, your behaviour can influence your loved one’s behaviour too.  However, do not forget that this is because of your unmet needs and it is not your fault!  We all can feel guilty and blame ourselves at times.

Further Information 

Challenging behaviour: a unified approach – updated Clinical and service guidelines for supporting children, young people and adults with intellectual disabilities who are at risk of receiving abusive or restrictive practices

https://www.bps.org.uk/files/challenging-behaviour-unified-approach-updatepdf

Challenging Behaviour – the basics from the Challenging Behaviour Foundation:

http://www.challengingbehaviour.org.uk/information/information-sheets-and-dvds/cb-the-basics.html

An Introduction to Positive Behaviours

https://m.youtube.com/watch?v=epjud2Of610

Positive Behaviour Support Resources factsheets from PBS4

https://pbs4.org.uk/resources-factsheets/

Positive Behaviour Support Resources from the PBS Academy

http://pbsacademy.org.uk/family-carers/

Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges

https://www.nice.org.uk/guidance/ng11

Assessing behaviour that challenges

https://www.nice.org.uk/guidance/ng11/ifp/chapter/assessing-behaviour-that-challenges

Behaviours that challenge: Ambitious about Autism

https://www.ambitiousaboutautism.org.uk/understanding-autism/behaviour/behaviours-that-challenge

Behaviour

https://www.scope.org.uk/support/tips/behaviour/challenging-behaviour

Physical challenging behaviour National Autistic Society

https://www.autism.org.uk/about/behaviour/challenging-behaviour/physical.aspx

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