People with SAS are generally experienced as having a friendly and jovial personality. However, behavioural problems are common and often have a huge impact on the well being of the individual as well as that of the people surrounding them. A broad spectrum of behavioural findings has been described, primarily:
- aggressive outbursts (hitting, property destruction; 70 - 88%)
- self-injurious behaviours (biting, skin picking; 40 - 50%)
- compulsions and rituals, obsessive tendencies, desire for sameness
To a lesser extent, anxiety, hyperactivity and impulsivity can also occur.
Physical, psychiatric and behavioural/ contextual problems can all contribute to behavioural issues. The most common physical problems that can play a role are pain (dental, ear, musculoskeletal), constipation, gastro-esophageal reflux, urinary tract infection, sleep problems and epilepsy.
In the psychiatric area, autism spectrum disorder, ADHD, depression and other disorders can be additional diagnoses that influence behaviour.
In the behavioural/ contextual area many aspects may play a role, for instance sensory processing difficulties and frustration related to communication difficulties. Also important are basic safety needs, like proximity/ presence, structure and predictability, stable environment and autonomy within boundaries. What an individual needs regarding these aspects is not so much dependent on cognitive abilities, but more on social and emotional levels of functioning. When daily living isn’t attuned to meet social-emotional needs, an individual can get overstretched, pushed beyond what they are able to comfortably do or bear; resulting in behavioural issues. Finally, life events or changes in a person’s environment may cause or perpetuate behavioural problems.
Management:
When there are behavioural problems, an important role of caregivers is to carefully observe and search for factors that may cause or influence the behaviour. This includes alertness to physical problems and extra attention to possible changes in physical health: eating and drinking, bowel movements and peeing, weight, movement, sleep. It also includes possible signs of pain. A GP, pediatrician or other doctor can investigate and/or help rule out physical problems. When pain is suspected, a trial with pain medication can be done.
When it comes to influencing the behaviour, normal parenting techniques or simple behavioural strategies may not work on the person with SAS. In this case, a behavioural therapist/ specialist or a psychologist with experience in behavioural problems in people with intellectual disabilities can be involved. They can help identify factors that contribute to the behaviour and work with caregivers on how to influence the behaviour.
Other specialists that may be involved are a (child) psychiatrist, LD-psychiatrist (learning disability psychiatrist; UK) or an ID-physician (physician for people with intellectual disabilities; the Netherlands). These specialists can help with diagnosing underlying psychiatric or developmental disorders (f.i. autism spectrum disorder) and prescribe medication when necessary.
Finally, peer support and respite care can give caregivers the social, psychological and practical support they need to avoid exhaustion and keep on caring for their child/ pupil.
For information for parents on various behaviour-related topics see: parent-guides
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