Improving quality of life

Sarah a lady in her late 20s, came to live in a Consensus home in the spring of 2014. She has a diagnosis of Autism and severe learning disability and did not communicate verbally.

Sarah had several specific behaviours which caused her distress and extreme anxiety. She and the support team at the service required the expertise and specialist intervention of the ‘Positive behaviour intervention team’ (PBIT) to fully support her.

Her behaviours included self-injury where on occasions she would hit herself around the head and push and pull support colleagues when she was distressed. She was also highly focused on food with a fixation on eating with a lot of associated anxiety around it. This was a real health concern as Sarah was already overweight. She also had great distress when arriving at a destination in the car. She was often not happy to leave the vehicle, becoming distressed by members of the support team when asked to get out of the car, she would try grabbing at seat belts and remained distressed until she knew she could remain and that the car would be driven back to the house. There was no pattern to the behaviour related to a particular venue – on one occasion the trip may be successful, but a repeat trip may see Sarah experiencing anxieties around this. The team were very keen to support her to live her life to the full and get out and about in the community and enjoy places that interested her.

Following ABC analysis and a positive behaviour support assessment conducted by the PBIT team, it became evident that Sarah would engage in a variety of behaviours in order to leave a destination, gain food or drink, ask for time away from others or when in distress.

When working with the support team the PBIT’s approach included exploring ways for Sarah to have more predictability and an increased choice about what was happening in her day. Some examples of intervention used included using objects of reference to indicate choice to go out in the car and the use of pictures to increase understanding of the options of activities available. Using methods that Sarah specifically found useful like Makaton in conjunction with images improved Sarah’s opportunities for choice and the option to decline. It became a much more fluid conversation and the team were able to respond to her needs and choices more effectively.

Another area that was explored was around food. The team provided healthy drinks and snacks at appropriate times and promoted an increase in exercise and included Sarah in the preparation of her meals and snacks.

Sarah has a great deal of anxiety around clinical environments (hospitals, dentists), but it is important that she has dental care and good oral hygiene. A desensitising plan has been introduced to allow Sarah to connect with the environment with positive experiences, using graded exposure – first visiting the building, leading to meeting the dental team that treat her, visiting the treatment room and becoming familiar with the surroundings. Each new step of the plan had to be introduced when Sarah appeared comfortable, with the ultimate goal being Sarah becomes comfortable enough to allow medical professionals to treat her.

Sarah now rarely exhibits behaviours when she goes out and on the rare occasion she does, it is when there are unexpected situations, like traffic jams, road works, and road closures. By making choices about where she would like to go Sarah has a more predictable day.

Sarah now enjoys more outdoor activities, which in turn has helped her lose weight – long walks in tranquil settings have become a firm favourite. The support team have built a good rapport with Sarah and now know when to give her some time to herself.

By including Sarah in the preparation of meals and snacks she is distracted from ‘waiting’ and is able to predict when her meal will be ready – which provides reassurance that it will not be long before she can eat. It has also increased her skill level, as she has now reached a level of completing smaller parts of preparation for herself such as buttering crackers, bread and peeling fruit, with verbal instruction and demonstration from support colleagues.

The frequency and intensity of Sarah’s distress and self-injurious behaviour has decreased, while her skills and quality of life have increased showing the importance and effectiveness of skill teaching, communication and most of all building rapport.