Person-Centred Support Maximising Choice & Control Capable Environments Positive Behaviour Support Active Support
Intensive Interaction Trauma-Informed Care Structure, Routine & Change Sensory Awareness Communication
Introduction
Iris Care Group is delighted to share with you our guide on what good looks like in supporting people with learning disability and neurodiversity. This guide has been prepared by Iris Care Group managers and clinicians from our English and Welsh services.
At Iris Care Group, we support many individuals with learning disabilities and those who are neurodiverse. We have developed considerable expertise in how to support these individuals in a person-centred way that enables them to live fulfilling lives and reach their full potential. Our goal is to ensure that all our staff and services can access this expertise to offer the highest quality care and support to every individual in our organisation. This guide includes real case studies of the people we support to illustrate these practices.
Neurodiversity describes a group or community that includes individuals with different neurological conditions. These can include autism, ADHD, dyslexia, and others. The term “neurodiverse” emphasises the natural variations in human brains and underscores the importance of recognising and valuing these differences.
Person-Centred Support
Person-centred planning puts the person at the heart of everything we do. It supports a person to live the life that reflects what matters the most to them. It should include everyone that is important in that person’s life with them as the main contributor if possible.
Person-centred planning considers every aspect of an individual’s life, including their likes and dislikes, what is important to and for them, their relationships, communication preferences, and more. This information is used to set goals that are meaningful and beneficial to the person, supporting their personal growth.
Key to person-centred planning is that this is not a ‘one off process’ it needs to be constantly reviewed and amended as the person grows and changes. These reviews should look at what is working for that person and include creative ideas for what happens next.
Maximising Choice & Control
It’s very important that the people we support have as much choice and control over their lives as possible. Some people may have limited capacity to understand more complex concepts and we also need to consider our duty of care to vulnerable people.
As part of a capacity assessment, we may decide that an individual is unable to make a certain choice, particularly if it puts them or other people at risk. However, we should always aim to empower people as much as possible to be in control of the decisions in their life. For some people, this may involve making more straightforward decisions for example, what to eat or choosing one activity over another.
Some people we support may not be able to communicate their wishes verbally. It is good practice to identify an individual’s chosen way of communicating, which could include, for example, the use of pictures or objects of reference. People we support can also communicate through their behaviour. It’s very important for staff to get to know the people they support well so that they are able to interpret someone’s wishes based on their behaviour.
Capable Environments
Capable environments are those that support a person in the most effective way to encourage positive interactions and opportunities for growth and development.
We have to understand a person’s individual needs in order to ensure the right environment. A multi-disciplinary team will identify a person’s sensory, communication, health, and support needs. With this information, we can help the people we support to live a fulfilling life by making sure we create the right environment. Providing a capable environment encompasses multiple factors shown below:
Positive Social Interactions - Regularly interacting with the people we support in a way they enjoy and understand. For example, reading and understanding a person’s PBS plan to ensure regular, feasible opportunities for positive social interactions, and considering the peer mix to ensure that those around a service user are a good fit and promote positive social interactions.
Support Communication - Understanding how the person communicates and having clear communication guidelines in place. This includes, communication attempts being consistently recognised and responded to, being aware of and understanding all guidelines in place for the person you are supporting e.g. communication passport, PBS plans and ensuring these are used consistently. It is important to ensure any communication aids are always available and the person is encouraged to use these.
Support the person to participate in meaningful activities - Regularly encouraging and supporting the person to engage with activities that are important to them and their development e.g. home and leisure activities and social interactions. For example, supporting the person to access groups with peers who share similar interests and the use of active support to ensure the person is able to engage in a task at a level they can.
Consistent and predictable environment - Ensuring everyone supports the person in the same way and that the person understands as much as possible about what is happening in their day e.g. routine, visual timetable.
This includes ensuring the PBS plan has been read, understood and is being implemented. Also, it is important to have regular meetings with people involved in the person’s care to ensure up to date, accurate information is included in plans.
Help the person to make or maintain relationships with family and friendsActively supporting the person to build and maintain healthy relationships for example, accessing therapy/groups to support with developing understanding of social interactions and relationships, supporting regular family contact and supporting contact with other peers/group activities.
Opportunities for choice-making - Ensuring the person is at the centre of decision making and is involved as much as possible in deciding on how to spend their time. This could include supporting and encouraging people to choose activities, meals, making schedules/planners, deciding how they spend their money.
Encourage independence and opportunities to learn new skills - Supporting the person to learn new skills, try new experiences and encourage independence as much as possible. For example, use of active support, knowing what the persons goals are and helping them to achieve them and offering opportunities to try new activities.
Personal care and health support - Being attentive to the person’s personal and healthcare needs. For example, understanding signs when a person is in pain/ distress, promoting access to relevant healthcare, acting quickly when pain/ illness is suspected and regular health checks.
Appropriate physical environment to meet the person’s needs - The physical environment meets the person’s needs/preferences. For example, lighting, noise, space, temperature etc. is centred around and appropriate for the person’s needs.
Mindful, skilled carers - All carers understand the person’s needs and behaviours. They know how to respond and provide the appropriate support. For example, accessing regular training, access to supervision and appraisals, regular attendance to team meetings and communication of concerns/ideas.
Effective management support and organisational context - Staff receive consistent support from their manager/s and the safety and quality of care for both the person and support worker/s is successfully recognised and delivered. This may include receiving regular supervision and debriefs.
Positive Behaviour Support
Positive Behavioural Support (PBS) is a person-centred approach used to improve the quality of life and well-being of individuals who exhibit behaviour that may challenge.
PBS focuses on understanding the reasons behind these behaviours and addressing the underlying needs and environmental factors contributing to them. The approach involves:
Assessment: Identifying the triggers and functions of challenging behaviours through observation and analysis.
Proactive Strategies: Creating supportive environments and routines that reduce the likelihood of challenging behaviours occurring.
Skill Building: Teaching individuals’ new skills to replace challenging behaviours with more appropriate and effective ways of communicating or coping.
Reactive Strategies: Developing safe and respectful responses to manage challenging behaviours when they occur.
Continuous Monitoring: Regularly reviewing and adjusting PBS plans to ensure they remain effective and relevant.
PBS aims to promote positive social interactions, increase personal autonomy, and enhance the individual’s overall quality of life by focusing on their strengths and preferences.
Prevention is a fundamental principle of PBS. Instead of waiting for challenging behaviours to arise and then reacting to them, PBS focuses on proactive strategies to prevent these behaviours from occurring in the first place.
When creating a PBS plan for the people we support the majority of the plan should consist of preventative strategies that supports long-term positive outcomes by consistently addressing the individual’s needs and promoting their overall wellbeing.
This approach helps individuals build and maintain positive behaviour patterns over time, leading to lasting improvements in their quality of life.
A PBS plan should also include amber strategies that act as early intervention when preventative measures are not sufficient. These strategies are designed to address behaviours that may be escalating but have not yet become critical. These may consist of distraction and de-escalation techniques, stimulus change/ removal or prompting to use copying skills.
The smallest part of the PBS plan should consist of reactive strategies. These are used when challenging behaviours have already occurred. While necessary, they are less desirable because they focus on managing behaviours rather than preventing them. These strategies are designed to keep the individual and the people around them safe from harm however, it is important to keep in mind these are used as a last resort.
PBS, when used properly, does not impose any single way of thinking about people. The best way to think about PBS is that a PBS plan is a helpful container for approaches and interventions that are most likely to help. When used properly, the format and structure of PBS plans allow staff quick and understandable access to the key things they need to know about how to best help the person. This means that good PBS plans consider not just the immediate causes of challenging behaviour but also other extremely important factors such as the person’s attachment needs.
Active Support
Engagement is important because everyone, especially neurodiverse individuals, and people with learning disabilities, are entitled to live a life as full as anyone else’s.
This includes having good relationships with friends and family, having the opportunity to learn new skills, to be a part of a range of different activities, have control and choice over their own lives, be a part of the community and be treated with respect as an individual.
These elements of support validate who we are and enable a fulfilled and meaningful life.
We can achieve this through our models of care: Active Support, Positive Behaviour Support, Building Better Lives, and Person-centred Practice.
Using active support to structure and organise engagement enables the individual and staff to work together in a proactive way. This can be achieved through the 4 principles of active support.
Principle Example
1
2
Little and often
3
Every moment has potential
Enable people to dip in and out and provide opportunities for acticities throughout the day, rather than 10-12... relaxation.
A key component of Active Support is to see all environments in this way. Searching for opportunities to promote engagement everywhere.
Maximising choice and control
Active Support recognises that choosing when, where, and how in activities creates responsibility and relationships which are valuable to experiencing choice and control.
4
Graded Assistance
Thinking about activities as a series of steps means that we can identify different parts of an activity that the person can do independently, with support or with tool such as asking / showing / repeating and guiding. The person can then be successful in any part of the opportunity.
Intensive Interaction
Intensive Interaction is a practical approach to interacting with people who do not find it easy to communicate. The approach helps people to relate to others and enjoy each other’s company.
It helps to develop communication abilities. In intensive interaction the carer, support worker, speech and language therapist or teacher works on being a better communication partner and supports confidence in communication.
Intensive Interaction can be used simply as a way of being with people. It enables us to focus on the quality of our everyday interactions. Intensive Interaction promotes a change in interpersonal behaviours for example, altering our voice, gaze, or body language. This is to make us less threatening and more interesting.
It is important to take the other person’s lead and respond to things they do. This can be by commenting on their actions, joining in with them and/or playfully imitating them. By responding instead of leading we don’t make demands on the person that they cannot cope with. Instead, we communicate that we value them and enjoy being with them as the ‘topic of conversation’ is within their realm of interest. Treat the things the person does as if this is communication. We read social meaning into actions even when this meaning isn’t yet clear. In this way the person is responded to as a communicator and gets to know what this feels like and involves. The communication partner ‘tunes in’ to the possible intent of various actions and expressions, so that eventually the partners are negotiating.
Use sensitive observation to judge how well the interaction is going. We respond quickly to any feedback, interpreting it so that we can keep the interaction positive and enjoyable for both partners. Use timing and rhythm in the interactions. This can make the interaction appear as a game with anticipation and drama to hold the person’s attention. Rhythm and repetition help the person with communication difficulties to predict what will happen next and to get more involved. We can create the feeling of taking turns.
When Intensive Interaction is used with older children and adults with communication difficulties, the practitioners need to feel comfortable communicating at the person’s level. The approach may involve the communication partners behaving in ways not typical for persons their age. This can feel like going against principles of normalisation. However, you are communicating in a way that is meaningful and enjoyable, and therefore respectful. Learning to ‘listen’ so sensitively gives people with communication difficulties the chance to have a say that they are unlikely to have otherwise. Being playful does not have to mean losing dignity.
Trauma-Informed Care
Trauma is a term used to describe the challenging emotional consequences that living through a distressing event can have for an individual. Traumatic events can be difficult to define because the same event may be more traumatic for some people than for others. However, traumatic events experienced early in life, such as abuse, neglect, and disrupted attachment, can impact people’s development and quality of life.
Neurodiverse individual’s and people with a learning disability have a higherthan-average risk of adverse childhood experiences (Berg et al., 2016), and are more likely to experience traumatic life events (Focht-New et al., 2008). Despite this, trauma is often overlooked because of differences in the trauma perception and response compared to neurotypical populations (Khatib, 2016) and because trauma responses such as hyperarousal, avoidance, and sensory processing impairments like hyper and hypo sensitivity are overshadowed by an ASD diagnosis (Caldwell, 2013; Faccini & Allely, 2021).
The below information has been taken from the Government guidance around Trauma-informed Care (2022). Trauma-informed practice aims to increase practitioners’ awareness of how trauma can negatively impact on individuals and communities, and their ability to feel safe or develop trusting relationships with health and care services and their staff. It aims to improve the accessibility and quality of services by creating culturally sensitive, safe services that people trust and want to use. It seeks to prepare practitioners to work in collaboration and partnership with people and empower them to make choices about their health and wellbeing.
Trauma-informed practice acknowledges the need to see beyond an individual’s presenting behaviours and to ask, ‘What does this person need?’ rather than ‘What is wrong with this person?’
It seeks to avoid re-traumatisation which is the re-experiencing of thoughts, feelings or sensations experienced at the time of a traumatic event or circumstance in a person’s past. Re-traumatisation is generally triggered by reminders of previous trauma which may or may not be potentially traumatic in themselves.
The purpose of trauma-informed practice is not to treat trauma-related difficulties, which is the role of trauma-specialist services and practitioners. Instead, it seeks to address the barriers that people affected by trauma can experience when accessing health and care services.
There are 6 principles of trauma-informed practice:
Structure, Routine and Change
Many neurodiverse individuals particularly those with a diagnosis of autism need structure and routine and can become very anxious if their routine is changed.
Use of tools like visual schedules can be very helpful in enabling people to know how their day is structured. They can also enable them to make and communicate choices about important areas in their life, like preferred food, relationships, or activities. Some neurodiverse individuals can become overloaded with too much information which can, in turn, lead to an increase in their level of anxiety. For some people, they are only comfortable knowing what they are going to do now and what is coming next. The use of “Now” and “Next” visual communication tools can be very helpful in that situation.
Whilst some neurodiverse individuals can find a change to their routine distressing, it doesn’t mean that they can’t manage change. Staff supporting them need to think very carefully about how that change is communicated to the individual and how it is implemented.
For example, when moving to a new home, a person we support may need to make a number of transition visits, gradually increasing the length of each visit, to enable them to become familiar with their new environment before they settle in.
Sensory Awareness
Our senses work together to help us to understand our immediate environment and tell us what is happening in that environment. Each sense picks up information from inside and outside our bodies.
Vestibular Movement
Interoception Interanal space
Olfactory Smell
Tactile Touch
Gustatory Taste
Auditory Hearing
Visual Vision
Proprioception Body awareness
We respond to our senses in many ways. We may get over stimulated by them or try to shut them down as our senses may make us uncomfortable or irritated. We may seek sensory input so much in our environment that we ignore anything else that is happening around us. This can create challenges to the person experiencing these sensory sensations. It can affect our emotional response, our actions, and our thinking. It can make us react in unpredictable ways or isolate us if we find it hard to regulate our sensory input in everyday life.
Neurodiverse individuals often experience sensory sensitivities. These sensitivities can affect how they perceive and respond to various sensory inputs, such as sounds, lights, textures, tastes, and smells.
The table below outlines some of these sensory sensitivities the people we support may experience:
I don’t like having my hair washed or cut
Clothing tags or materials can make my skin crawl
I am not good at following directions
I have a limited diet and avoid certain textures
Bright lights bother my eyes I have a hard time listening
I don’t like being tickled or touched
It’s hard for me to fall asleep and wake early
Loud sounds bother me, and I don’t like big crowds I smell everything
Sometimes I don’t notice when my hands are messy, or I dislike my hands getting messy
I can be clumsy and knock things over or throw myself onto furniture
If a person we support loves water and will wake up early and stand in the shower for a long time often for over an hour let’s look at how we can support them using sensory active support skills to integrate their sensory needs and still, make the most of their day:
We could prepare a tasty breakfast (taste and smell)
We can see if this individual is able to go swimming daily (touch and proprioceptive and vestibular)
We could have a visual clock and timer to support them to stay at a just right sensory state (visual and auditory)
We can use deep breathing and have a warm towel ready when leaving the shower (interoception)
Communication
Communication is important to everyone. This includes us as staff and the people we support. Communication is the ability to understand someone’s communication preferences, both expressive and receptive, and this is the basis of building positive relationships which in turn leads to positive outcomes for the people that we support.
By communicating our wants, needs and preferences we can also support neurodiverse individuals that also have behaviours that can challenge if we support their chosen communication method.
It is important for staff to learn peoples chosen communication preferences. As staff teams we should be looking to enable the people we support to communicate with us. For those that use PECS we should ensure they have the resources to do this, such as Now and Next boards or PECS books or strips that display routines. For those that communicate using Makaton staff should be receiving training that ensures they have the ability to understand what is being said to them. It is the staff’s responsibility to adapt to the person we support rather than the other way around. It is also important staff have an open approach when working with the person as you can learn a person communication style simply by spending time and working with them, perhaps alongside a person who knows that person’s communication style as they may have worked with the person for a longer period of time.
It is important that as staff we remember that people with neurodiversity and/or a learning disability can have delayed processing time so staff need to ensure consistency in how we communicate with the people we support and keep the message consistent to ensure we are allowing them time to express their responses as they may still be thinking about the original interaction.
Bringing it All Together
In the previous section of the guide, we outlined the 10 pillars of good practice. Whilst they are each important individually, it is by bringing them together that we can ensure that really effective support is provided to the people in our services.
Every person is a unique individual who should be supported in a person-centred way. Not everyone will need aspects from all 10 pillars in their support plan and people’s needs change and fluctuate over time. The following case studies of real people being supported by Iris Care Group will show how a blend of the different areas of good practice contained within the 10 pillars can work to enable an individual to live a fulfilling life.
A Day in the Life
Positive Behaviour Support
Active Support
Communication
Person-centred support
Trauma-informed care
Maximising Choice and Control
Capable Environments
Intensive interaction
Structure, Routine and Change
Sensory Awareness
I wake up and my support worker doesn’t ask me many questions because they know I like quiet in the morning. They help me to make my breakfast by showing me how to pour my cereal. My support worker shows me a schedule of my day to help me plan my activities. They ask me what activity I would like to do. They show me a picture of different activities in the area to help me decide.
I decide to plan a trip to the cinema. I can sometimes get overwhelmed when there is too much choice so my staff made a short list of the films, they thought I would like. My support worker helped me budget how much money I have for snacks.
The train I needed to get to the cinema was cancelled which meant I could no longer go. I found this hard to deal with as it was such a last-minute change of plan. My support worker really supported me during this and suggested other activities we could do instead. I said I would prefer to go to my room for a while. When I am dysregulated and overwhelmed, I like to throw a bouncy ball against the wall. My support worker got a ball too and joined in. This helped me feel like I wasn’t alone.
Tomorrow, I have a dentist appointment. I have had negative experiences with dentists in the past. The staff who work with me have shown me pictures of what will happen, so I know what to expect. They said that they know it might be difficult for me, but they will be there to support me.
Case Study
Matt from Beechwood College (Capable Environments)
Matt* is a 19-year-old young man with diagnoses of attention deficit hyperactivity disorder (ADHD), Tourette’s syndrome, anxiety, and a Learning disability.
Matt came to Beechwood College in early August with a 2:1 staffing ratio having experienced significant behaviours that challenge which limited his ability to access the community. On arriving at the college Matt started to display multiple behaviours that challenge including environmental, verbal, physical aggression, and self-injurious behaviour that ranged from negligible to moderate in severity. Matt was also controlling of his environment and found it difficult to build trusting relationships.
...having this choice and control was felt to be an important contributing factor to the success of his placement at the college.
A robust transition was facilitated with everyone involved in Matt’s care which included multiple visits to the college based on Matt’s needs. Matt was fully involved in the transition and advised on what visits he would like and what this would look like; having this choice and control was felt to be an important contributing factor to the success of his placement at the college.
The team at Beechwood College were offered training facilitated by the clinical team to support Matt’s identified needs which contributed towards having a skilled workforce to support him. There was a further formulation session facilitated to consider Matt’s previous history and any important life events/ traumas that had impacted on him and how we understood his presenting behaviours. Staff were supported to understand Matt; why he presented the way he did and how we could support him to improve his quality of life.
* Not his real name
This enabled the staff team to work in a trauma-informed way. A core team was also implemented to offer consistent care and build positive working relationships.
A PBS plan was created to support the team to ensure the environment around Matt was effective in meeting his needs. Matt was involved in developing his own PBS plan, grab sheet and even personalised this with a drawing he’d done himself.
The graph below shows the progress Matt made in terms of the behaviours that challenge presented. As can be seen, the incidents reduced in both frequency and severity.
Incidents by Month
Matt now has excellent education attendance and on-going contact with his family. He regularly accesses the community in a 5-seater vehicle and has started to visit Folly Farm. He has good relationships with staff and attends his own MDT to give feedback on his goals and aspirations. Matt is now working towards reducing his staffing, starting with trialling 1:1 in the classroom.
Case study
John (Active Support)
John* is a 62-year-old man. This case study examines the structured support provided to John during a cooking activity aimed at making an omelette. The goal was to encourage independence and skill development while ensuring safety and success in the task. A staff member leads the activity, with all ingredients and utensils prepared in advance.
Preparation
Ingredients: 3 eggs (cracked in a bowl), mushrooms, cheese, oil for cooking, and salt and pepper for seasoning. Utensils: butter knife, cheese grater, fork/whisk, bowl, frying pan, spatula, and plate.
Steps and Support Levels
The activity begins with John putting on an apron. The level of support for this step is minimal, with John either independently completing the task or receiving verbal instructions.
Next, John is instructed to chop the mushrooms into small pieces using a butter knife. If necessary, the staff may demonstrate the technique and further chop the mushrooms to the correct size, but they will gauge John’s level of engagement and act accordingly.
For the next step, he is prompted to pour oil into the frying pan, with the staff providing verbal instructions and setting the frying pan to the correct temperature. John is then instructed to add the chopped mushrooms into the heated pan.
John is shown how to stir the mushrooms and is instructed to continue until they are soft. Staff assesses when the mushrooms are properly cooked and prompt * Not his real name
him to move on to the next steps. He is instructed on how to use the cheese grater and is shown the technique needed to grate the cheese.
In the next step, John is instructed to whisk the eggs in the bowl. If necessary, the staff may further whisk the eggs and add salt and pepper. He is then instructed to pour the whisked eggs over the cooked mushrooms in the pan.
John is guided to tilt the pan to ensure the eggs spread evenly and cook until set. He is instructed and shown how to turn the omelette. Staff guide John through the process and monitor cooking time, ensuring both sides cook for 30 seconds.
John is then prompted to sprinkle the grated cheese on the cooked omelette. Following this, he is guided to fold the omelette in half. Staff ensure the omelette is fully cooked. Finally, John is instructed to transfer the omelette to a plate with staff guidance, and then to remove the apron, either independently or with minimal verbal instructions.
Observations
The level of support varied based on John’s mood and engagement. He exhibited increased confidence with positive reinforcement and clear instructions.
The activity demonstrated improvement in handling utensils and following multi-step instructions, providing a practical way to develop fine motor skills and kitchen safety awareness.
The staff balanced between providing direct instructions and allowing John autonomy. Stepping in only when necessary to ensure safety and task completion is a great example of successful active support in practice.
This case study highlights the effectiveness of active support in a cooking activity. By preparing all ingredients and utensils beforehand and providing stepby-step guidance, John was able to successfully complete the task of making an omelette. The experience contributed to his sense of accomplishment and skill development, demonstrating the value of tailored support in daily living activities.
Case Study
Luke (Intensive Interaction)
Luke* is a 22-year-old man with diagnoses of autism, severe learning disability and visual impairment.
Luke is non-verbal and leads others by the hand to make his needs known. He also uses vocalizations, gesture, and body language to communicate. He seeks intensive interaction from others by approaching them, taking their hand, and maintaining eye contact.
Through intensive interaction sessions with a speech therapist, it was clear that Luke enjoyed these sessions. He would sit with the therapist and vocalise, making eye contact to see if the therapist would copy. He would briefly smile during the sessions.
It was felt by the speech therapist that Luke would benefit from intensive interaction sessions from other members of staff that support him to help him build relationships. A team leader from his home and a lecturer were given detailed information on how to engage in intensive interaction and what the speech therapist would like them to record during the sessions.
There are 7 key indicators to monitor when engaging in intensive interaction these are: encounter, awareness, attention and response, engagement, participation, involvement, and initiating interactions.
Intensive Interaction Recording - Key Indicators
Level Name Encounter Awareness
Absence of responses
Key Indicator
to what is happening socially
Fleeting sensory awareness of what is happening socially
Attention & Response Engagement Participation Involvement
1-3 seconds attention and
Emotional response or Physical response to what is happening socially
3+ seconds attention and Sequence of responses
One-wayness to what is happening socially
Turn-taking
Two-wayness
Flow
Restarting the flow of ‘two-wayness- after a pause
Initiating Interactions
Starting the flow of ‘twoway-ness’ independently
Practitioner does not have to approach
Person continues with what they were doing before the practitioner approached
No evidence that the practitioner’s approach has influenced the person in any way
Fleeting eye contact
Other body language cures indicating awareness through hearing / touch / smell / taste
Eye contact (or other sensory attention) A smile
Reaching out
Making a sound A movement
Pushing away
Brief sign of positive / negative mood
Making a demand for an object or sensory experience
Sustained eye contact (or other sensory attention)
Repeated sounds Holding hands
Leading the practitioner somewhere
Person gives objects to the practitioner
Person demands objects or sensory experiences in a ‘one-way’ interaction
The person’s response is influenced by what the practitioner does and vice versa
The content of the interaction is cocreated and involves something new
Taking turns making vocal sounds
Taking turns tapping
After a short pause, the person returns to the practitioner and attempts to restart the ‘two-wayness’
The key is that the person is asking for an interaction that is co-created in contrast to simpl demanding an object or sensory experience
This level describes an interaction when the person is eager for the co-created dialogue and tries to get it going irrespective of whether the practitioner approached or is working to be available for interaction
Luke’s lecturer and team leaders engaged in one session each a day of intensive interaction with him. The length of these sessions depended on his engagement. Data was collected twice a day for 4 days. The benefit of these sessions can be seen in the graph below. As the intensive interaction sessions progressed there was an increase in interactions and an increase in the number of key indicators that Luke demonstrated in the sessions. Both Luke’s lecturer and team leader reported that the more sessions of intensive interaction they engaged in the more enjoyment they gained.
Intensive Interaction Data
Case Study
Tom (Trauma-informed care)
Tom* is a male with a diagnosis of Down Syndrome, moderate Learning Disability, poor vision, and hearing. Tom has an extensive trauma history.
His siblings had reported that physical violence was present within the childhood home, perpetuated by their father and mother towards the children. It was suggested that the severity of physical aggression towards Tom was so severe that it could result in significant physical injury. This is reported to have included Tom’s hands being forced into boiling water, his fingers being hit with wooden utensils (e.g., rolling pin, wooden spoons) and having his head repeatedly hit against external walls.
Physical violence was perceived to be used to punish, control, or “correct” certain behaviours.
Tom was discouraged from his attempts to make sense of and regulate his thoughts and emotions related to the trauma he experienced. When he attempted to engage in self-stimulating or self-soothing behaviours (e.g. rocking backwards and forwards, talking to himself, running away from the family home), he was reprimanded for this. This created additional stress for him, contributing further to the unpredictability and uncertainty of his environment.
Tom’s early life experiences had undoubtedly influenced how he related to others, creating a tendency to constantly perceive the world in “threat mode”.
Whilst Tom no longer rocks backwards and forwards, he does continue to display self-soothing behaviours at times. This may include talking to himself and picking at his fingers.
* Not his real name
Due to his parental neglect Tom had not had the opportunity to learn how to manage difficult feelings. As children we often look to our caregivers to make sense of experiences and to ascertain whether we are safe. When this essential guidance and support is lacking it leads people to develop insecure or disorganised attachment styles; they find it difficult to trust and feel safe in the presence of others.
Tom’s early life experiences had undoubtedly influenced how he related to others, creating a tendency to constantly perceive the world in “threat mode”.
Tom’s learning disability meant he had difficulty expressing his emotions which further increased his frustrations.
In addition to his past experiences, other factors also impacted on Tom, increasing his feelings of unsafety, and making him feel upset.
Tom’s learning disability meant he had difficulty expressing his emotions which further increased his frustrations. Combining this with his difficulty in self-regulating his emotions, due to self-soothing behaviours being punished when he was young, resulted in Tom demonstrating impulsive aggression (angry, retaliatory) behaviours when others attempted to comfort or reassure him.
When his peers also presented as unsettled or engaged in behaviours that he might perceive as aggressive, e.g. shouting, swearing, or raising fists, Tom believed himself as in imminent risk of violence and was unable to recognise that not everyone was a threat and that their actions might not necessarily negatively impact on him. Over time, he would view others peer as “unsafe” and react aggressively even when these other peers were presenting as calm.
Historically Tom’s response to threats had been to “run away” (i.e., flight), however, this was more difficult in his current home. Without this option to run away he would instead become aggressive, adopting a ‘fight’ mechanism as his alternative means of defence.
Tom’s past trauma clearly still impacts him; he can appear to react aggressively without any clear trigger, particularly if he is not actively engaged in other activities or has time to ruminate on potential worries.
At Tom’s new Iris Care Group home, his own sensory room has been created for him, where he can withdraw if he is feeling unsettled and self-sooth.
Staff understand that Tom requires significant reassurance around each activity and interaction; for example, they have adopted an intentionally playful way of encouraging Tom to take his medication, turning the activity into a magic show, and encouraging him to see if he can “make his tablets disappear”.
Staff understand that Tom requires significant reassurance around each activity and interaction...
This very person-centred approach creates the conditions for relational security and secure attachment that is essential for individuals who have experienced trauma. Staff now provide the physical safety, emotional predictability, and joyful mutual interactions that are allowing Tom to learn to manage his behaviours and enjoy a better quality of life.
Case Study
Meg (Tying together Routine, Structure & Communication)
Meg* is a 21-year-old female with a diagnosis of Autism, Severe Learning Disability and Echolalia (a condition that causes someone to constantly repeat other people’s words)..
Prior to moving to one of our supported living homes, Fieldview, Meg lived at a residential school for 3 years, and her arrival at Fieldview was her first opportunity to live independently in the community.
This was always going to be a big move for Meg, and it was vital that the people who would be supporting her knew and understood her routine, as well how she communicated and the best ways of communicating with her.
A phrase that might seem meaningless to many could convey distress to Meg, but another specific phrase could
convey happiness.
Recognising the potential complexities, three staff from Fieldview started visiting Meg at school 3 or 4 times a week over a 3-month period prior to her scheduled move. They took the time to get to know her, build trust and rapport, and learn how best to support her.
For example, they learnt that she had developed negative associations around the word “school”, and it had become a term which triggered behaviours that challenge. Meg had adopted the term “lavender room” to refer to school instead as it was a colour she found soothing. Using this insight, the Fieldview team arranged for her new bedroom to be painted lavender to provide her with an immediate calming environment.
Meg’s mother referred to her as having “her own language” and the team came to recognise that understanding her communication needs and her echolalia was central to providing her with the person-centred support she needed.
A phrase that might seem meaningless to many could convey distress to Meg, but another specific phrase could convey happiness. Meg oftens likes to refer to herself in the 3rd person (a common trait for individuals with autism) e.g. “Meg Happy” or, when she is dealing with less pleasant emotions, such as sadness or anger, she will refer to “Mummy Sandra sad” or “Daddy Paul Sad”.
As the team have grown to know Meg they have been able to document trigger phrases in her PBS plan e.g. if Meg refers to “Horrid Henry” this can lead to behaviours that may challenge and the team know that de-escalation strategies must be immediately implemented.
It is also normal for Meg to link colours to items or places (another classic trait for those who have an Autism diagnosis), e.g. “blue park”, “pink iPad” or “yellow shop”. This is a trait that she has had since childhood with Meg linking specific places to the emotions they create for her. Knowing this helps the team to gauge her reactions to places and events and if they might trigger anxiety.
Although Meg can communicate verbally she usually uses key words “Meg Yes” or “Meg No“ and, due to her echolalia diagnosis, she will often repeat what she hears. She loves watching videos on her pink iPad and will communicate what she wants to watch next by quoting from the video she wants to see or is currently watching.
Staff have found that mirroring Meg’s own language style provides her with communication predictability and consistency that she finds reassuring.
When Meg quotes from a video e.g. “the wheels on the bus go round and round said Simon”, she enjoys it when staff repeat the quote back to her in the same pitch and tone that she has said it in e.g. “the wheels on the bus go round and round said Meg”. Staff have found that mirroring Meg’s own language style provides her with communication predictability and consistency that she finds reassuring.
Routine is vital in ensuring Meg maintains a happy and fulfilled life. She needs to have clear structure throughout her day and week. This takes the form of visual planners, PECs, and the use of a Now and Next board. Being able clearly see a predictable routine has been shown to lower her anxieties.
Meg has a video call with her mum on her iPad twice a week on set days and at set times, and even this call has to follow the same format each time and her mother knows her responses need to be consistent. If Meg makes a mistake during the call and breaks from the routine she goes back to the beginning and begins again until it is completed to her liking.
Routine is vital in ensuring Meg maintains a happy and fulfilled life. She needs to have clear structure throughout her day and week.
When making plans for the day or going through her routine, staff have learnt that using PEC form to explain activities supports Meg’s understanding and significantly lowers her anxieties. Meg has a “white calendar” where she counts down the days to when she is visiting her parents, which she does every 4 weeks. Staff give her the “white calendar” after breakfast, lunch and at bedtime so that she receives regular reassurance that she will be seeing her family soon. However, if Meg has free access to the “white calendar” she reads it constantly which increasing her anxieties, so those supporting her are mindful of this.
Inevitably things can happen that may be out of Meg’s normal routine, and how these are managed by the team is critical to her support. Social stories are particularly effective for managing scheduled changes e.g. doctors’ appointments, holidays, or even key staff going on leave which can particularly upset her; with a story being read with her three times a day for five days before the change.