Most people enjoy being engaged in activities and having meaningful relationships. These basic human rights are important; they make people feel more independent and competent. It is good to feel the same as everyone else and be part of what is going on. Having more skills and better relationships with people are valued by most of us.
People with autism may:
- prefer solitary or lone activities
- have difficulty understanding feelings of others/ reciprocity
- have differences in their expressive and receptive communication styles
- have difficulty processing auditory languages
- have strong attachments to objects/ interests
- be resistant to change
- be hyper.or hypo.sensitive to internal and external stimuli
- engage in self stimulating behaviours
- sometimes be easily distracted
- have generalisation issues (see CPI Autism Refresher course manual for more details).
Some people with autism may need extra support to develop their skills and build their relationships. They may want support to help them overcome some of the recognised features of their condition. Supports may come from outside agencies to help these people along the way—with communication supports, health care needs, respite or inclusive education. Local and national organisations offering practical support, developing coping skills and understanding and emotional support are highly prized by families. Some families may benefit from receiving information.
History has taught communities to look to professionals to care for people with disabilities; twenty years of working for change has taught us that services by themselves can never be enough (Alan Tyne 1992). The social model of disability stresses that the needs of individuals can never be considered in isolation from the social, family and political context in which they are embedded (Mittler and Mittler 1994). The emphasis for intervention has moved from focusing solely on the child with intellectual disabilities, to looking at the needs of the family as a whole. Being part of a family is important, working in partnership with agencies will help people set their own goals and reach their potentials.
Over the last decade the former Sisters of Charity of Jesus and Mary Services (now the Muiríosa Foundation) have been providing Person-centred positive behaviour supports to people with intellectual disabilities. Some of the people have also been classified as being within the Autistic Spectrum Continuum. Research shows that around one in four people with an intellectual disability would benefit from having a Person-centred positive behaviour support plan. Positive behaviour support is ‘…characterised by educational, proactive, and respectful interventions that involve teaching alternative skills to problem behaviours and changing problematic environments. It blends best practices in behavioural technology, educational methods, and ecological systems change with person.centered values in order to achieve outcomes that are meaningful to the individual and to his or her family’ (Bambara et al. 2004).
People with an ID/ ASC have been prescribed medications to help them overcome challenging behaviours, they may have been restrained in the past or may have been excluded because of perceived problem behaviours. Positive behaviour supports provide people with a means to change environments and offers people skills to lead better lives. Person-centred positive behaviour supports plans analyse the factors that affect a particular behaviour.
The Person-centred positive behaviour supports plans seek to determine why and how a person uses their behaviour in order to exercise some control over their environment. Information is collected from interviews, observations and assessment tools. The person completing the functional assessment may be a family member (n, 1) or a support staff (n, 13).
In the 14 case studies referred to in this article, the following possible primary functions of the target behaviours were identified:
ESCAPE: New or difficult or non preferred demands being presented to the individual
TANGIBLE: May be deprived of tangibles, eg food, music, toys; may be unable to express they want something
ATTENTION: May be deprived of attention from others
SENSORY: May be in a barren or restricted environment
PROACTIVE ENVIRONMENTAL STRATEGIES
* Creating person centred visions
* Increase family supports
* Low arousal environment
* Visual schedule
* Fun/ Preferred Activities
* Interactional style
* Building Rapport
* Attention to lighting, sounds, smells, crowds
* Independent working
* Finding a friend
* Sensory based supports
* Staff training in understanding ASC
* Choice boards (First/ Then)
* To have more control over their daily life
* Doing things they want
* Having fun!
PROACTIVE POSITIVE PROGRAMMING
* Predictable Day – visual planner
* Problem solving – Social skills
* Coping skills – trauma, waiting
* Skills training – reciprocity in relationships
* Relaxation training
* Regular breaks
* Self Management
* Desensitization – noises, groups
* Setting Limits – empowerment to have control to make choices and be aware of consequences
PROACTIVE FOCUSED SUPPORT
* Reward schedules/ extrinsic motivators
* Antecedent Control
* Stimulus Control
* Psychiatry review of medications
* Speech and Language therapy referral
REACTIVE SITUATIONAL MANAGEMENT
* Crisis Prevention Intervention
* Active Listening
* Stimulus Change
* PRN medication – pain relief, anxiety
Other secondary functions were hypothesised for each individual and these included environmental reasons, health issues (anxiety, pain, skin disorders), attention or sensory needs. There are many possibilities why a person is displaying a particular behaviour. A well.crafted Person-centred positive behaviour supports plan will identify the main setting events or maintaining consequences, and intervene effectively.
Once the functional assessment information is completed, an intervention plan is created from the inference made as to why the challenging behaviour occurs. Interventions are broken down into a conceptual framework (LaVigna et al.1995) so that challenging behaviours are reduced and the person has a much improved quality of life.
Some common interventions from the 14 case studies are detailed in Table 4, above. Below are two examples of how Person-centred positive behaviour supports helped two individuals with autism.
Seamus is a gentle young man. He delights in music, listening to it and creating it. Seamus lives at home with his mother. Seamus’s mother was concerned because Seamus did not sleep well at night. She learned about Positive Behaviour Supports through the services Seamus receives from the Sisters of Charity/Muiríosa. With guidance and support, Seamus and his mother made environmental changes to his lifestyle at home. Seamus now sleeps better and takes less sedating medication.
Roger currently lives in a congregate setting. He prefers quiet places and people.—he likes to get to know people bit by bit, and try out new activities gradually. Roger used to appear anxious if he had to go outside; he didn’t want to get into a car. Positive behaviour supports have now enabled Roger to visit a shop in the local village. Roger was supported with desensitisation and relaxation techniques. He can buy himself a bar of chocolate and he has gotten to know the shopkeeper. He is supported by people who have developed a bond with him and he continues to make more progress towards community inclusion each time he visits the shop. Quarterly reviews of Roger’s positive behaviour support plan allow for his circle of support to meet and forge a joyous vision for his future.
To summarise: models of family support have changed over the last thirty years; the family and the professional have different but equally vital roles to play in supporting individuals with an intellectual disability and autism. Having autism does not mean that one cannot enjoy life the same as everyone else. Person-centred positive behaviour supports help people to live the lives they want by helping them to build their own skills, so they are not marginalised by the behavioural characteristics of autism. Person-centred positive behaviour supports result in a reduction in the use of prescribed medications, support people to forge optimal visions for the their future with circles of support, and see more collaborative work between people with ID and their families, circles of support and agencies. Person-centred positive behaviour supports empower individuals with ID and autism to have a voice and forum to express themselves. There are increases in community presence and participation. They offer a committed focus on fixing environments and not people (Horner 2000) and, as a result, the individual and their family experience enhanced quality of life!