If we struggle to communicate formally with deafblind people they may use their behaviour to get their message across. Sarah Butler finds out why their behaviour may be called challenging and what Sense does to help make life, and communication easier.

Some years ago, I talked to a couple about their family life. One of their sons was born deafblind, though this wasn't immediately diagnosed, and their son's impairments had obviously presented the family with some challenges.

One thing that sticks in my mind is their description of their son's hatred and fear of a particular teacher for the deaf, who used to come to their house when their son was a toddler. 'Liam hated this man: all that would happen was that the man would come in, Liam would take one look at him, throw his hearing aids out and go and hide under the table. This man didn't see this as a pretty clear piece of communication, Liam to him was just a difficult child.'

The teacher seemed to blame the child's behaviour on an inbuilt `badness'. The parents knew this wasn't so, and that their son was communicating his distress at having to see this unsympathetic man, in a perfectly understandable and effective way - even if it was distressing and unpleasant for those around him. But Liam's behaviour was already getting him labelled as challenging by the outside world.

But whose behaviour was challenging? The child who had no words to tell the teacher how he was feeling, or the teacher who failed to understand the fear of a child who cannot hear or see? Many people who work in the field of challenging behaviour would say that the child's behaviour was completely logical and understandable, and that the teacher's was not.

Liam is now in his forties, living semi-independently in a Sense home, surrounded by people who understand how to communicate with him so he has no need to challenge them with his behaviour. He has been lucky in the care and understanding he has received through his life, but some deafblind adults can have a very different experience. Sometimes the only way they can express the way they feel is through continuing to show behaviour which we label challenging.

This piece is about how adults born deafblind may try to communicate in ways that may distress us, or which may endanger us or them. It is also about how Sense works with these deafblind people to help them interact with the world around them, and to ensure that they never feel cornered into behaving in ways that challenge.

'You've got to have something to eat and a little love in your life before you can hold still for any damn body's sermon on how to behave.' Billie Holliday, blues singer.

What is challenging behaviour?

So what exactly is challenging behaviour? People often think that challenging behaviour simply describes violent or aggressive behaviour, but a rugby scrum is an aggressive place to be, and we don't label prop forwards as people with challenging behaviour. Whether a behaviour is challenging or not often depends on context.

Sense's definition of challenging behaviour is: "Any significant behaviour shown by a deafblind person that places any individual at unacceptable risk". It's a challenge for deafblind people, because it can put them in danger, or get in the way of them developing their full potential to leading a rich and fulfilling life. It's a challenge to us to find ways of enabling another form of communication , and providing opportunities for personal growth.

Challenging behaviour comes in many forms. Some people may use aggressive behaviour, others may harm themselves. Some damage the things around them. Not all challenging behaviour is physically harmful. When someone behaves inappropriately – for example, undressing in public, or sitting on the floor and refusing to move - this is also a challenging behaviour because it can put them at risk and compromise their dignity. And if someone behaves passively, this is a challenging behaviour, again because of the effect it has on that person's life, and because it makes them vulnerable. Finally, repetitive, 'stereotypic' or self-stimulatory behaviour may be challenging if it prevents someone from joining in other activities.

At this point it should be said that not everyone likes the term 'challenging behaviour', because it is so easily used as a label for people. Some prefer to talk about challenging communication. Whatever term we use, it is important never to say that someone 'has challenging behaviour', it's not a disease, nor a diagnosis. It is more useful to say something like 'about once a week Angela slaps her face two or three times'. The person, not the behaviour, should always be our focus.

For this reason, it's worth looking closely at the person whose behaviour has just challenged us, and thinking carefully about what has happened without jumping to conclusions. You can't judge what is going on just by the behaviour. For example, if you've known Lilly for five years and in all that time she has never hit herself, how would you interpret her suddenly moaning one night, and banging her ear? It would be a fair guess that she has earache, wouldn't it? But if her neighbour Jim did the same thing, you might wonder whether he's unhappy because his parents haven't been able to visit for weeks, because he tends to bang his ear whenever he is unhappy. Knowing the deafblind person is essential.

Another reason that challenging behaviour is challenging is because it can be so hard for us to understand. It's all too easy for people to assume that someone is "angry", or "spoilt", or "lazy", when we do not understand why they are behaving in a certain way. And that assumption can stop us from trying to find out what the behaviour means. Without that understanding we cannot hope to help the person communicate more effectively.

Communication is at the core

When a child throws a "tantrum", we know that he or she is disagreeing with us, and showing its feelings in its behaviour. Over time, small children learn better ways to express their disagreement because we can talk to them and find out what's wrong, and show them how to tell us what they want.

Someone born deafblind may never have been able to develop these communication skills. And what begins in childhood as an expression of anger and frustration may in adulthood be their only way of telling people what they want.

'It's often the case that a deafblind person has no other available methods of communicating apart from through their behaviour.' Chris Fuggle, Sense challenging behaviour consultant.

'My experience has been that extreme behaviour often comes from not feeling listened to.' Herbert Lovett.

Put yourself in the shoes of Will, who has a small amount of vision and no hearing. He only knows two signs, to ask for a drink or for the toilet. This morning he woke with a terrible headache, so when a support worker put a pair of swimming goggles in his hand, he was less than enthusiastic. He pushed them away. But the staff member put them back in his hand. Will threw them to the floor, and the support worker was frustrated. She doesn't know why Will threw the goggles down. If she has no understanding of challenging behaviour, she may decide that Will is just being "awkward" or "attention seeking". She may inappropriately decide to punish him by refusing to take him swimming (a short-term result for Will, of course) – and maybe by ignoring him for the rest of the day.

A Sense support worker who does understand challenging behaviour will wonder why Will has pushed away the goggles, as Will usually likes the weekly swimming trip. He would accept that Will has decided not to swim that day, and to stay at home being quiet. He will observe Will carefully, and may spot him rubbing his head – and then try giving him some pain relief in case his head is sore.

The key to understanding challenging behaviour is not to pigeonhole people. Will is a person with a headache who doesn't want to go swimming – he is not someone with challenging behaviour. And challenging behaviour is never 'just attention seeking': it is always an attempt to communicate something that is important to that person.

Challenging behaviour as a response to deafblindness

Ginny Smith studies challenging behaviour and has over 20 years' hands-on experience of working with deafblind people with learning difficulties with Sense. She says that challenging behaviour is utterly normal. People born deafblind have to use challenging behaviour to communicate because they have major difficulties communicating through speech or sign, and understanding the world around them. Their deafblindness removes the means to learn about the world, the people around them, and themselves.

The world and other people can therefore seem very confusing and frightening to someone born deafblind. No one responds to their situation in the same way: everyone has a different personality and background, and their deafblindness will affect them differently too. So it's not surprising that while one person may respond to fear or anxiety by banging their head, another may retreat into themselves completely.

Ginny says, 'A lot of people become withdrawn because everything's so frightening. They then focus on self stimulation. They perhaps don't want people touching them – it's quite unpleasant for them. So it can be extremely difficult to make contact.'

She describes a technique she calls intensive interaction, which Sense sometimes uses to reach someone who has withdrawn totally. 'You let them take the lead. You use whatever they are doing as self stimulation and imitate it, so if they tap their forehead, you tap your own forehead to let them know you're there. They might do something else to see what you do. It might take hours, an hour a day for months, before you get a response. And then they'll start to get some enjoyment out of it, feeling that they're having an effect on someone else.' The lines of communication have been opened.

Jenny Fletcher at Sense adds another perspective on 'stereotypical' behaviour such as rocking or gouging. She doesn't see this as challenging behaviour, but rather as a way for a deafblind person to find where they are in space. When someone bangs their body, the head, chest, or throat especially, this creates conduction, so that the person can feel vibrations, and even if the banging is quite violent it may be pleasant for the person doing it. Jenny and her colleagues are developing techniques to help people born deafblind to gain a clearer sense of themselves in space, called sensory integration. So if a child is injuring itself to get some feedback about its body, she will get physiotherapists and occupational therapists to use pressure, or weighted clothes, to give that feedback in a less dangerous way. This technique works with adults too.

'It's an exciting field to work in, and very rewarding when you can see how you've changed someone's life. It can be very slow, it can take years, but then you look one day and realise how much has changed.'

Ginny Smith

When Sense's challenging behaviour teams try to analyse why someone is behaving in a particular way, they have to take many possibilities into account. As we've seen, the primary reason that people use challenging behaviour is the need to communicate. But there are other potential reasons too, such as brain injury, epilepsy, hormone imbalances, diet, or mental health problems, and these possibilities must all be taken into account when assessing someone's behaviour.

'Over time, I have gradually come to see that people whose behaviour is difficult are not clients to be "fixed" so much as freedom fighters – the most vigorous critics at our attempts at service.' Dr Herbert Lovett, clinical psychologist, in Learning to listen: positive approaches and people with difficult behaviour.

Jack's story

Jack is in his 40s and lives in a care home with staff support. He is an affectionate man with a good sense of humour, who knows what he likes and doesn't like. He enjoys going out to different places, especially the pub, being out in the cold weather and the sensation of rain. Jack was diagnosed with Rubella Syndrome and has no useful vision but has useful hearing. His ability to express himself is limited: he will use objects of reference and some basic signs; sometimes to get people to understand, he will take them by the hand and lead them to what he wants.

Staff were concerned about the level of Jack's self injurious behaviour and anxiety, and felt that this was seriously affecting his quality of life.

They undertook a functional behaviour assessment to help them decide how to increase the support staff gave Jack so that he would not need to hurt himself.

Although Jack displayed different behaviours, the assessment focussed on head banging behaviour as this had, in the past, resulted in him needing medical treatment, in staff needing to intervene physically, and in a reduction in his quality of life.

The assessment was carried out over three months and was extremely detailed. They defined Jack's head banging behaviour as when he banged his head against walls, doors, floors, and corners of furniture, often seeking out sharp edges. It was more likely to occur in situations when Jack was unwell, when he had increased time spent alone in his bedroom and when staff asked Jack to complete a task such as having a shave, coming downstairs, or going out. It became evident that the main purposes of the behaviour were to ask support staff to provide drinks, food, bathing, medication and physical support. This way of communicating his needs meant that Jack could avoid those situations that he found demanding, which in turn caused Jack to isolate himself.

The assessment and outcome was fed back to all staff, and they were trained to implement Jack's support plans. Four members of the staff team volunteered to become part of the core team, to monitor the support plans and ensure that all members of the staff team supported Jack consistently.

The first stage of the support plan consisted of rapport building. This meant that on a regular basis throughout the day, staff provided Jack with the things he needed (i.e. food and drinks) making no direct requests of him, ensuring that they chatted with him but asked for nothing from him. The aim was to teach Jack that staff were not there just to provide food and drink but that they could interact with each other in a more sociable way without Jack needing to display head banging behaviour. This stage of the plan was followed for about two months with the core team monitoring each other. As a result Jack showed fewer signs of anxiety and the head banging behaviour decreased dramatically, with Jack spending more time downstairs and less time isolating himself in his bedroom.

The second stage of the support plan consisted of functional communication. This meant providing Jack with an alternative behaviour to head banging that would be easy and efficient to use. A specially designed switch was installed in Jack's room which was connected to two speakers and a portable pager. The speakers had a voice recording informing Jack that help was on its way: when the switch was pressed the voice was activated and the pager would vibrate. It was important that staff reacted very quickly to Jack pressing the switch, as they would if he was head banging, so that Jack understood that he had an alternative way of communicating his needs. Jack very quickly understood the purpose of the switch and began using it independently.

This programme of support has made a huge difference to Jack's life. Since it began, there has been a dramatic increase in his social interaction with others, interaction from staff has increased, his activity levels have increased, and Jack has participated more and initiated more activities. He is spending more time in the company of others and does not need to hurt himself to communicate his wishes.

During September and October 2006 there were 41 incidents of Jack using head banging behaviour; during September and October 2007 there were four incidents. Of the 41 incidents in 2006 the majority required physical intervention and medication, of the four incidents in 2007 none of them required physical intervention or medication.

It's not just Jack who has benefited. Staff have said that they feel more confident when supporting Jack, and seem to have a better understanding of him as a person. They feel that he is showing greater satisfaction in his life. He appears to be less anxious and more contented.

Thank you to Sense West, who first published Jack's story in their newsletter.

Effects of challenging behaviour

Of course, challenging behaviour affects not only the deafblind person but also those around them: their family, other deafblind people, staff, neighbours, the public, and the professionals who try to enable them.

For families in particular it can be especially difficult. If they are looking after an adult who shows challenging behaviour at home, they may have little support, and feel very isolated. They may worry about what would happen if their child hurt someone. They will be distressed by their child's distress. They may be wondering desperately what their child is trying to tell them. They often also worry about the future for the person they care for. And all too often they fear that they are somehow to blame.

Gini Bartlett is Family Liaison Officer with Sense West. She knows all too well what families go through from her experience with her own son. 'For a start, it comes as a huge shock when your child exhibits challenging behaviour. You don't expect your child to do that. Depending on what your child does, it can be scary too. How do you cope? The person may be completely uncontrollable. If you're out, or at the shops, what do you do? If your child isn't disabled, you can talk to them, you can explain, do your best to get them to stop – whereas when it's someone whose communication skills are very basic, you can't do that. Even if they know a few signs, they're not going to stop and look at what mum's doing and read the sign ... you feel helpless.'

Until Gini's son moved into a Sense residential unit in his 20s, Gini's own life could be extremely challenging: as he got older she couldn't take her son out on her own, and even being at home with him on her own wasn't easy. His move to Sense made all the difference, to Gini, and to her son.

Like many parents, Gini can't quite shake off a feeling that it's all somehow her fault – though she knows that it is not: 'From a parent's point of view, it's silly but you do feel to blame, even though it's not your fault. I do still feel a bit responsible, even though I work for Sense. Though I have access to lots of information, lots of understanding, it's really difficult when my son's had a hard day. If I feel this way, parents with less information must find it even more difficult.'

'You take it personally. It's very hard to deal with. You can't just watch your child without it upsetting you.'

Even trained professionals like the staff at Sense can find some behaviours particularly hard. Graham Nolan, Sense's Day Services Manager for the South East told me that everyone has different tolerances: 'I find it more difficult to support people who vomit. Face me with someone who assaults me, that's easier for me. But other people can't deal with things like saliva, or self-abuse.'

Graham went on to talk about the importance of matching staff to the people they support: 'Not all challenging behaviour is aggressive. Other people will sit on the sofa refusing any offer of activity, total withdrawal or passivity. It's the other end of the spectrum of challenging behaviour and sensory impairment and both are a response to us getting it wrong. It takes a different type of staff to work with someone passive.'

Encountering challenging behaviour every day, whether at work or at home, is incredibly demanding. Even when someone's behaviour is violent, family and staff's response is primarily one of distress: they like the people they support and care for, and don't want to see them unhappy or hurt.

Sense and challenging behaviour

The key to Sense's approach is always to seek to meet people's needs before they get to the point of challenging behaviour. Tony Osgood, a behaviour specialist and a lecturer in learning disability, shares this approach and neatly summarises it:

1. What good things has the person got going for them in their life?
2. Increase these good things, introduce new good things
3. Make good things non-contingent (don't withhold, don't punish)
4. Then come back to me and talk about challenging behaviour in six months

(from 'Suits you sir?' Challenging behaviour in learning disability services).

Ginny Smith reinforces this, from a slightly different angle: 'We need to find out what triggers these behaviours, what's happening in their life. And to work out ways to reduce it, and to avoid them reaching that point in the first place. So if it's always when that person doesn't want to do something, can we give them more help? Can they avoid it? Can we help them understand it and enjoy it?'.

There are two strands to Sense's approach to challenging behaviour. If someone's behaviour is worrying staff, they must try to find a quick way to alleviate the problem, a short-term solution. So if Gary tends to tear up Gail's magazines in the living room, staff might give Gary his own box of magazines to tear up.

But this does not address the underlying cause of Gary's distress, so in the long term, staff would look carefully at his life, and at any patterns they can see in his behaviour. They may realise that when Gary is in the living room after dinner, everyone else is busy and he has nothing to do, so he gets bored. He never tears up the magazines at any other time, as there is always someone to talk to. So staff encourage Gary to help them clear up after dinner, and then someone sits and talks to him in the living room to keep him company. He stops shredding Gail's magazines.

Not every case is as straightforward as this, of course, and it can take weeks, months, or even years to help someone change their behaviour. But though this can be painstaking and slow work, everyone I spoke to at Sense emphasised that it does work: none could think of a single person they hadn't been able to help in the end.

Sense's policy on challenging behaviour is absolutely clear: staff must never punish anyone for their behaviour, in any way. Behaviour is after all a form of communication, and Sense wants to make communication easier, not to shut it down.

'If the person is unwell, emotionally isolated, in controlling, non person-centred environments, being interacted with poorly...well, heavens, what would you expect? So I think it would be a good beginning to ask ourselves some fundamentals here: is the life of the person you currently find challenging a good life, some life, or no life? And how would you behave given this?'

Tony Osgood, Behaviour Specialist and Lecturer in Learning Disability at the Tizard Centre

One aspect of supporting someone who uses challenging behaviour that can raise hackles is when staff use physical restraint or medication. In some non-Sense homes both measures are widely used as a matter of course. But Sense believes strongly that they should only be used when absolutely necessary, and should always be kept to a minimum. Neither may be used unless the exact measure has been agreed in advance by the management team – and in the case of medication, prescribed by a doctor. Sense always puts the rights and needs of the deafblind person first.

Making decisions and avoiding assumptions

Sometimes it can be difficult to balance someone's rights with their needs, when communication is a challenge and it is not clear how much someone understands. How much should staff and carers impose their own judgements on someone with a learning disability?

Here's a possible scenario. John refuses to eat anything but sausage and chips, and gets upset if not offered them at every meal. Staff are concerned about John's health because he eats such an unvaried and fatty diet. How should they approach this? Is John making an informed choice or should they try and change what he eats?

I put this scenario to Chris Fuggle. His priority was to ensure that John was able to make an informed decision himself, if at all possible. He pointed out that if John hasn't eaten anything else for a hundred meals, he probably isn't aware of other options. So Chris would suggest that rather than taking a confrontational approach, staff subtly change John's meal, adding a few carrots here, some slightly differently shaped chips there. They could encourage him to become used to sausage and chips which look slightly different. They could introduce other foods, but not at mealtimes. Or they could add a starter before the sausage and chips, hoping that one day John will choose the starter instead.

And they should try to work out why John is so insistent on sausage and chips. Is food the only thing he has control over? Is it the only thing staff listen to him about? Will he really only eat sausage and chips, or do staff only ever offer him sausage and chips, on the basis that it's all he will eat? If, after all this, John still only eats sausage and chips, and he is clearly making an informed decision, then that's his decision, and staff must accept it. John is after all an adult, and has the same rights to make decisions as everyone else, as long as he has the information he needs to make that decision.

Mental Capacity Act

The Mental Capacity Act 2005 protects people over 16 who may lack the capacity to make certain decisions. It has five key principles:

• Every adult has the right to make his or her own decisions, unless it is proved that they do not have the capacity.
• People must be given all practicable help to make their own decisions before being treated as unable to do so.
• Just because someone makes what might seem to be an unwise decision, this does not mean they lack the capacity to make that decision.
• An act done or decision made under the Act for or on behalf of someone who lacks capacity must be done in their best interests.
• Anything done for or on behalf of a person who lacks capacity should minimise restriction of their basic rights and freedoms.

Challenging behaviour is a huge and complex subject. Everyone working in it agrees that there is still much to learn, but that they have made great strides in recent years. It's an exciting field because people's perspectives have changed so radically, from seeking ways to control challenging behaviour, to looking for ways to understand what people are telling us with it. There's still a long way to go, but already pioneers like Sense are making an enormous difference to people's lives.

All names of deafblind people have been changed to protect their identity.

(c) Sarah J Butler 2008

Sources of help

Sense supports many congenitally deafblind people and because of this it has developed considerable expertise in challenging behaviour. Sense staff work in alliance with other professionals such as psychiatrists and psychologists, GPs and members of social services teams, and these people may also be able to help you.

Other organisations specialising in learning disabilities and with an interest in challenging behaviour include:

British Institute of Learning Disabilities (BILD), Campion House, Green Street, Kidderminster, Worcs, DY10 1JL
Tel: 01562 723010 | Email: enquiries@bild.org.uk | Web: www.bild.org.uk

The Challenging Behaviour Foundation (CBF), The Old Courthouse, New Road Avenue, Chatham, Kent ME4 6BE
Tel: 01634 838739 | Email: info@thecbf.org.uk | Web: www.challengingbehaviour.org.uk

CBF has some excellent fact sheets and its DVDs are free to parents.

Deafblind International (DbI), DbI's secretariat is based in India. It is most accessible through its website: www.deafblindinternational.org and in its Review, which publishes some extremely useful articles. A recent series by David Brown looked at congenitally deafblind people's senses, linking them to behaviour. The Review is edited by Eileen Boothroyd, who is based at Sense in London; contact her for copies.

Institute for Applied Behaviour Analysis (IABA), 5777, West Century Boulevard, Suite 675, Los Angeles, California 90045, USA
Tel: +1(310) 649 0499 | Web: www.iaba.com

You can download some excellent articles from their newsletter online. Look out for those by Gary LaVigna in particular.

Mencap, 123 Golden Lane, London EC1Y 0RT
Tel: 020 7454 0454 | Email: information@mencap.org.uk | Web: www.mencap.org.uk

Tizard Centre, University of Kent, Canterbury, Kent CT2 7LZ
Tel: 01227 764000 | Web: www.kent.ac.uk/tizard

An academic centre specialising in learning disability. Its members have published some of the most useful papers on challenging behaviour recently.

Written resources

Allen, David (ed), 2002, Ethical approaches to physical interventions: Responding to challenging behaviour in people with intellectual disabilities, BILD Publications, Kidderminster, UK.

Emerson, E. (1995), Challenging behaviour: Analysis and intervention in people with learning difficulties. Cambridge, Cambridge University Press.

Halle, J.W.(1994), Forward to Carr, E.G., Levin, L., McConnachie, G., Carlson, J.I. Kwmp, D.C., and Smith C.E. Communication-based intervention for problem behaviour: A user's guide for producing positive change. Baltimore, Paul H. Brookes.

Lovett, Herbert, 1996, Learning to listen: Positive approaches and people with difficult behaviour, Jessica Kingsley Publishers, London, UK.

Mental Health Act 2005, more information from Public Guardianship Office, Archway Tower, 2 Junction Road, London N19 5SZ
Tel: 0845 330 2900 | Web: www.guardianship.gov.uk | Email makingdecisions@dca.gsi.gov.uk

Osgood, Tony (2004), Suit you sir?: Challenging behaviour in learning disability services.

New information resources from Sense

Sense has produced a new factsheet called 'What do we mean by challenging behaviour?' which is available from our Information Team.

We also have a range of publications about challenging behaviour for loan from Sense's library.
Tel: 0845 127 0060 | Email: info@sense.org.uk

Alternatively, you can search Sense's library catalogue at www.sense.org.uk/publications/library