As we have seen, behavioural and emotional problems totally affect not only the life of the person who feels 'Stuck-Fast', but also the social system of which he forms a part. Relations between educators, between parents and children, brothers and sisters and family end up coming under heavy pressure. If you really want to tackle the problems thoroughly, you cannot avoid also involving the people from that social system in the treatment in one way or another.
People who spend a lot of time each day with the person who feels 'Stuck-Fast': parents or other educators will play a very active part in any attempt to get favourable development going. But also the people with whom he has strong ties, even if he does not see them every day, at least need the opportunity to exchange experiences and information ‑ the parents, brothers or sisters of someone living in a special facility, for example.
You see social systems and patterns persist even when people do not see each other every day. If children are removed from their homes because of their behavioural problems, then involving members of the family in their treatment might at first sight seem not to have any direct point. But they have a bond with each other, and that bond continues throughout their lives. If they are involved in the treatment, they will be able to get on with their handicapped family member in a considerably more satisfactory way, and that will benefit their relationship and thus the life of the handicapped person.
If we are going to draw up a treatment plan, we have to centre it around the mentally‑handicapped person whose problems were the reason for the situation getting out of hand. The form in which problem behaviour may manifest itself varies enormously, but it is not the intention that we should gear the treatment to the particular type of problem behaviour.
There are also very many similarities to be seen between people who feel 'Stuck-Fast', though the way in which they react may differ. These similarities have already been dealt with at some length in preceding chapters, but, for convenience of reference, I shall mention them again briefly: what we are dealing with is insecure, anxious people who are extremely vulnerable, very sensitive to sensory information, and who can soon be thrown off balance. Their moods, certainly if they are intense, can quickly change from positive to negative.
The people we are talking about experience relatively few moments of relaxation or pleasure, irrespective of whether they are alone or in the company of others. They hardly trust other people and it takes a very great deal of time and effort to build up any sort of trust. They are certainly very dependent on other people, but not in a way in which they use that dependence as a safe basis for exploring the world, trying out their own possibilities, and to fall back on should the need arise. Their dependence is problematic: they cling to people who look after them and cannot make a move without them. They are people who are beset by fears: afraid of themselves, afraid of losing control of their own actions, their own moods; they are afraid of other people and of new situations.
They have an exceptionally low expectation of what they can do themselves, or, in the case of people who have already developed a general awareness of their own bodies, they have a negative self‑image, and that keeps them imprisoned in the small circle they just continue to run round in. They do have the skill to take initiatives, but do so less and less. It does seem as if they lack the nerve to do the things they in fact can. This lack of nerve can be seen most clearly when they start to do something new, or if they move.
In short, the people in question are ones whose entire functioning is affected. Their whole life is blocked as a result of their feelings, thoughts and actions becoming completely stuck.
What we understand by "treatment" is the process of systematically trying to get that general development which has become stuck moving again. This can be done in many ways. How we do it depends on the seriousness of the problems and on what the educators and family members can (still) manage to do.
How systematically we can set to work may vary considerably. With the least systematic way, educators and possibly therapists work together from very generally formulated basic assumptions. Now and then, the way of doing things is discussed, but only broadly and not all that often. With the most systematic way, the treatment is drawn up extremely systematically. The basic assumptions are set down on paper and are followed closely in the course of activities and treatment. The various stages are planned systematically. The educators and therapists work together closely, regularly discussing the treatment and the results obtained according to previously established criteria, and also paying attention in the course of their assessments to the personal roles of the people implementing the plan.
One condition for a plan of treatment is that we should in the first place be very clear about what we have in mind. Our aim is not to eliminate or get rid of the problem behaviour, but to change the direction of the downward spiral into which someone has gotten with others. Our aim is to get his personal development, which has come to a complete standstill, moving again. To achieve this goal, it is not necessary per se to eliminate the problem behaviour altogether.
The problem behaviour cannot always be prevented. Sometimes it is just there. Sometimes, under certain circumstances, it is even a desirable reaction ‑ for example, hitting out when you are threatened, or being sick when you are stuffed with food. We may find a particular reaction odd but, depending on someone's level of development, the reaction may be highly appropriate in a threatening situation.
Our worry is that the problem behaviour may be blocking someone's development. Should it become a permanent reason for not letting someone go to school or to a club any more, or for stopping them mixing with people altogether? When, generally speaking, he likes being there?
Our aim is to teach both the handicapped person and ourselves how to deal with and accept the problem behaviour in such a way that in the long term any emotional, physical and material damage is kept to a minimum.
To start with, let us look at the problem behaviour in a different way: let us consider it against the background of someone's overall functioning. Aggression, self‑inflicted injury, thieving, running away, refusing to eat ‑ none of these things in themselves constitutes problem behaviour. Depending on a person's nature and level of development, they can be quite understandable reactions to specific circumstances, for example reactions to intimidation, boredom or lack of understanding.
Where and how?
Wherever possible, the treatment should be carried out in the everyday situation: simply at home, in the communal group, in the classroom, in the activity group, the games room, the swimming pool or the gym. And the people who carry out the treatment are the ones who already always spend a lot of time with the handicapped person: his parents and other immediate family, group leaders, teachers, activity supervisors, etc. If necessary, extra staff can be called upon: play therapists, kinesiotherapists or physiotherapists and creative therapists.
Although a great deal can be achieved if the people who spend a lot of time each day with the handicapped person (parents, carers, teachers, activity supervisors) receive intensive help and support, in some cases it takes more to help someone back out of the dumps and get their development going again. In such cases a therapist may ask for extra help from outside the daily situation.
That extra help has various functions. In the first place it gives everyone the chance to catch their breath and re‑charge their batteries. But there is more to it than that. It may be good to try out other possibilities and develop new ways of behaving outside the usual situation, in a less threatening environment. We thus create a kind of trial situation in which someone can practise new means of expression for their daily life. Sometimes this happens in a group, sometimes on an individual basis.
In that situation, a person can again carefully try to walk, to gesture, to swim, to sing. He can practise using his hands again freely. Where the person concerned has already gone a little further in developing his personality, within this 'extra' situation he can also practise getting his thoughts into order and talking to the therapist about the view he has of himself. It will then be possible for the idea that "I'll never manage to do that", which has hitherto paralysed him, to change to the idea that "sometimes I can do that too!".
The extra help can range from a relaxed invitation to make contact in someone's own way, and in their own time, to the specific practising of new skills in the area of communication, play, leisure, work or the ability to cope. The therapist will sometimes go for relaxation and sometimes for practice. This will depend on how the handicapped person has spent the rest of the day or the week. If he has already spent all day pushing himself to the limit and already managed to do all kinds of things, he will need some relaxation. But where the person in question in fact does nothing more than retreat into his own little corner, far away from the big bad threatening world outside, the relaxation will be combined with forms of contact, so that he can have the experience of being able to do something without being threatened by himself or by others.
The extra help, the therapy, forms an integral part of the support plan, and the therapist of course works closely with the others who are supervising the handicapped child or adult.
The treatment plan is drawn up in close cooperation with all those involved on a daily basis, plus the psychologist and/or educator and, of course, the doctor, who contributes his knowledge of influencing things via the biological and physical route.
The treatment we are going to use consists of four components which we are going to work on simultaneously:
- Together, we shall try to handle the problem behaviour in such a way that the person who feels 'Stuck-Fast' can get to grips with the situation and then adopts some other form of behaviour instead. We help him develop his own capacity to deal with his problem behaviour.
- We try to let him experience the fact that it is possible for him to exert influence on his environment, thus giving him the feeling that he can do something himself and building up his self‑confidence.
- The foregoing can only be carried out if the handicapped person learns to trust others, so this is what we will work on. We will give him the chance to develop a safe dependence.
- We create a peaceful, relaxed environment. The atmosphere will be good, with interesting things to see and do. The handicapped person will have an opportunity to make contact with familiar individuals and be given the space to stabilise emotionally.
I have already said earlier that the treatment is based on a person's total functioning. It is not the intention to concentrate on one single aspect. It is not just a question of dealing with the problem behaviour or influencing the emotional or psychological problems involved. Nor is it just a matter of the relational disturbances.
By drawing up a plan of treatment, we force ourselves to go through the four areas mentioned above one by one. If you concentrate on just one of the areas, you won't manage it, because while you are busy with one aspect the other areas will get out of hand again. Like swimming against the current.
These four components are of course in reality not separate entities. They constantly influence each other and you cannot work on one of them while ignoring the other. Anyone who doesn't trust other people will not be able to acquire emotional stability. Anyone who fails to learn how to deal with his own behaviour will be dependent on others and not be able to exert any influence on his environment. The four components of the treatment plan will be dealt with at length in the chapters which follow.
The essence of the treatment involves having the carers gear their actions and reactions to the way in which the handicapped person operates. And they can only do that if they know very well and very precisely how the person operates. How he reacts. How he processes the information he receives, and how he gets his bearings.
Once his carers know all this and take it into account, he doesn't constantly need to defend himself against the others. And then he can discover how to protect himself against his own problem behaviour. In this way he can gain self-confidence and then, together with his educators, go on to choose what his interests are. Once this has been done, they will be able to do the activities that suit him. In this way, he will slowly begin to feel that he is getting to grips with his environment and his life. And so he will again begin to feel that there are some things he can do.
Only when his carers know precisely how and how long he can concentrate, how and when he relaxes, and what sort of rhythm his life follows between waking and sleeping, can they help him in his development towards emotional stability.
Only when they have found out just how he derives security from people who are important to him can they build up a bond of trust with him. The carers should never forget that, to him, they are just the latest in a long line, and that there will have been many others who have turned out to be a disappointment.
By working on all the above points at the same time, the carers can create conditions in which he can again deal with his environment in a positive manner. They start by letting him have good experiences, and so set in motion a process in which he learns to gain more control of himself, get a grip on his environment and gain trust in others.
Not quite as easy as it sounds
The basic assumptions stated above sound deceptively easy. As if you can just get straight on with it. And sometimes you can. But the simplicity of the basic assumptions often bears no relation to the complexity of the reality. Anyone setting out to support a person who feels 'Stuck-Fast' merely by following these simple basic assumptions will find they have a lot to put up with and will need to draw heavily on their staying power. Heavy demands will be placed on relations between those providing daily care, particularly relations between the parents, and those between individual colleagues. Everyone ‑ brothers and sisters, family members ‑ will be affected. In most cases it will not be easy at all, though it does happen that seemingly insoluble problems turn out to be surprisingly easy to put right.
Discovery Awareness is a unique way of using video with a clinical team to help them develop the way they view a client, encouraging them to take the client’s point of view. During a DA meeting, the DA coach uses a range of skills to direct the participants’ focus towards the client’s posture and body language in such a way that the participants begin to shift their point of view about the client. In so doing, many participants start to become more aware about their own personal perspective about the client. What might have been thought of as meaningless behaviour becomes to be seen more as representing the client’s experience, emotion, involvement, initiative, communication, being-in-touch-with and self-management.
The DA coach helps the participants to become more aware of their own personal perceptions about the client and uses this to increase the individual participants’ interest in getting to know the client more. When participants engage with this renewed interest they can become motivated to get to know the client again. Many participants say that they become reacquainted with someone who they thought they have known for a long time.
Why use Discovery Awareness
As we know, some people with intellectual disabilities can often experience behavioural and emotional difficulties that affect both themselves and the social system in which they form a part. Things can become “stuck fast”. Their relationship with their parents, family and friends, and their support system can come under such heavy stress that their quality of life suffers to the extent that everyone feels negative, stuck and lost about what to do.
For professional and paid staff, either in an NHS service or in a community support provider, the pressures of their ‘work’ with a client can mean that their ‘view’ of the client can become clouded and unclear. For example, staff may begin to have serious concerns about the client deteriorating, they may focus on the threat and risk the client’s problem behaviour presents, and they may have difficulty in communicating and connecting with the client.
In services, often there is an emphasis on the client’s difficulties and disabilities. This usually happens simply because there is a lack of time available to ‘think’ about the client. Staff teams can often become stuck with a way of thinking and responding to a client so that everyone feels stuck fast.
The Heijkoop method starts from the point that a person’s behaviour may vary enormously, but our plan to help the person is not focused on a particular type of problem behaviour.
People with intellectual disabilities who feel “stuck fast” share many similarities although their behaviours vary; they tend to be insecure, anxious, extremely vulnerable to others, very sensitive to sensory information and can be quickly thrown “off-balance” by events and other people. Their moods can quickly change from positive to negative, and become intense.
In professional services, it is likely that the view of a person is clouded due to the emphasis on the disorder or handicap which often leads to a ‘explanatory way ´of observation. “He is doing this or that because of lack of ...”.
Whatever may be or was the cause, there is nothing left besides inquiring into this person. Only really seeing of this person by ‘meaningful’ observation will bring back the possibility of connecting by care staff and family members. It is the very first step to self-strengthening (Stern) which lead to a reduction of challenging behaviour.
Staff’s constructs about the client are elaborated - so that more relational work is possible.
Introduction to the Heijkoop method to challenging behaviour in ID
The Heijkoop method is used widely in ID challenging behaviour services across Northern Europe; the lack of an English-language account has inhibited its uptake in the UK. The method is fundamentally experiential and aimed at understanding the ‘Who’ of the client to complement the objectified ‘What’ knowledge of standard diagnostics. It is conceptually grounded in developmental psychology, focusing on interpersonal relationships and intersubjectivity, in particular Daniel Stern’s combination of clinical and empirical perspectives on attachment and the emerging sense of self. This working paper is informed by 5 years’ clinical use in Nottingham of Discovery Awareness, a process of video-analysis that is the core instrument in Heijkoop’s approach. Heijkoop introduced and developed this during three separate week-long periods of service consultancy into two NHS Assessment and Treatment Units within Nottinghamshire Healthcare NHS Trust’s specialist service for adults with ID.
When challenging behaviour exists, we assume that the self of the patient is in some way precarious and vulnerable, and seek to identify aspects of it for consideration. The best way we can come to understand the nature of their self is by becoming aware of the impact they have on us while striving to understand the world from their point of view. Yet the staff’s view of the patient's personhood can get clouded by serious concerns regarding deterioration of the general development; by negative experiences resulting from the threat emanating from problem behaviour; and/or by difficulty making contact or communicating. In professional services, the view of a person can also be clouded by lack of time to think about them at all. Yet only really seeing this person brings back the possibility of connecting. It is the very first step to self-strengthening.
We study the here and now with people who are important within the person’s daily life. This is a particular type of investigation that depends upon an active and open communication between those present as they talk with each other. The subject of study is on the one hand the feelings, expectations, thoughts, doubts, insecurities, worries, contacts and cooperation which the person with ID (hereafter referred to as ‘the patient’ because the second author’s context of practice is a specialist ATU) brings to meetings with important people. On the other hand it is about the feelings, expectations, thoughts, doubts, insecurities, worries, contacts and cooperation these important people themselves bring to their meetings with the patient. Most of all, the method enhances awareness of how these two sides fit and sometimes misfit. Conversation about these issues is conducted from an open and interested attitude, in particular without blaming or shaming anyone.
The process addresses multiple aims. It seeks to increase general sensitivity to the patient and the motivation of staff to engage with them, since interaction is the fertiliser that strengthens the person’s self. To identify deficits which require compensation from important others so that the patient’s capabilities can flourish. And to start and support a process of individual and collective movement which leads to a more (inter)personal and safe space in which both important others and the patient can move.
Different instruments increase consciousness as well as insight about who this patient is as a person for important others, and how those important others are as persons for the patient. Although an understanding of these internal affects is created by studying patterns of relating in the here and now, the method also brings the needs and demands of the client into the picture. Such needs and demands were already there before admission, and they will be there after the patient leaves and enters a new living situation.
There are five instruments in this method. Each instrument makes its own contribution; each contribution has a mutual effect. They affect the thoughts, beliefs and expectations each individual caretaker holds about the patient and themselves. Becoming aware of these has an almost immediate impact on the attitude that frames the way each patient is met, contacted, cared for and co-operated with. In turn that has an almost immediate effect on the experiences the patient has with the caretaker. In the short run it has a calming and relaxing influence on both parties. In the long run it builds self-confidence and mutual trust.
- Discovery Awareness: video review to raise awareness of what is going on for and between people
- Functional Developmental Profiles that help staff to become aware of expectations and open the way to insight about over- and or under estimations
- Relationship Dynamics that compensate for the vulnerable self
- Problem-solving Co-operation
- Video Training: Enabling important others to develop, by supporting them to validate their own personal ways of interaction based on insights from the process.
Dr. Jacques Heijkoop is a private practitioner in developmental psychology, and as such frequently approached by mental health and school services. He also offers supervision and training courses for various facilities in the juvenile and psychiatric care sectors. His orientation is international and stretches from his base in the Netherlands outward to England, Belgium, Germany and Scandinavia especially Norway.
His career related to people with learning disabilities has lasted more than forty years. In the 70s and 80s he published many articles about his specific way of observing and answering to persons with ID and challenging behaviour. In 1991 he published the book ‘Stuck Fast’ in which his basic assumptions are worked out. His second book ‘Discovery Awareness’ is published in 2015.
Research Project 'Discovery Awareness'
'The use of Discovery Awareness in Intellectual Disability Services: Examining a European approach to challenging behaviour in a UK setting'
Approaches to challenging behaviour which promise solutions may be more attractive to service providers and policy makers. The strength of reflexive approaches like DA is that they may provoke lasting change by supporting staff to make their own discoveries about the patient and could be a valuable approach to challenging behaviour.
Between 5 and 15 % of people with ID demonstrate challenging behaviours. Staff reactions can be counter-productive causing a cycle of reinforcement. Challenging behaviour interventions often focuson altering specific behaviours but may not focus on interactional aspects of care.
Whilst the immediate efficacy of behavioural interventions has been demonstrated, they can have negligible long term effects. Staff reflection on interaction can improve relational aspects of care and have positive effects on challenging behaviour. This paper explores how Discovery Awareness(DA), an interactional method, may be used to engender staff reflexivity in order to stimulate interaction and lower challenging behaviour.
This paper examines common approaches to challenging behaviour and uses DA as a point of contrast. DA is a method created by Jacques Heijkoop utilizing video analysis to stimulate new ways of reflecting upon interaction.
This paper focused on the way in which staff spontaneously begin talking as if: they were narrating what the patient was thinking in DA sessions.
'Although reported speech and constructed dialogue have been well researched, there has been significantly less investigation in conversation analytic literature of how interactants voice a non-present person’s internal monologue , and the actions this may accomplish. This paper explores this phenomenon in staff interactions during an intervention called Discovery Awareness (DA). DA aims to support staff who work with people with intellectual disabilities and challenging behaviour through video analysis of the person; the objective is to become more attuned to the patient and to try to see the world from their point of view. This research has found that this interactional context leads to the recurring use of ‘imagined constructed inner dialogue’ whereby the staff narrate using a first person pronoun what the patient may be thinking in a particular part of the video clip. This paper argues that the use of ´imagined constructed dialogu´e allows participants in DA session to engage in complex interactional work which builds vivid descriptions of the patient they are seeking to understand better. The participants use this form to make assessments , empathise with the patient, evidence their points and summarize the gist of what others say. In sum, it is an extremely versatile way of enacting a variety of complex epistemic and empathic actions.'
'Imagined constructed dialogue' It means talking from the point of view of someone else, but as the kind of thing they may say, but the kind of thing they may be thinking. Generally, it is characterised by using personal pronouns, in the present tense, and representing the speakers interpretation/understanding of what another person is thinking or feeling at a particular point. Whilst it shares these commonalities, it is used to serve a variety of different functions in DA sessions (acting as evidence for points being made, as a way to represent different ways an interaction could have gone, to disagree with someone else in an easier format, or to summarise what another person has said by using/adopting the voice of the person). I argue what all of these actions have in common is that they put the person's voice at the centre of the interaction, and are therefore empathetic turns at talk, as they present, and represent to others, the persons inner thoughts (as they interpret them). What makes this striking is that it seems to be a natural consequence of the DA sessions that I saw.