Most patients with Lowe syndrome are friendly and sociable. However, there is a characteristic pattern of behaviours that are common in Lowe syndrome that can pose a challenge to individuals and their families.
The behavioural characteristics of children with Lowe Syndrome include temper outbursts, aggression, unusual repetitive behaviours, irritability and rigidity.
If a person has a diagnosis of Lowe syndrome, it does not mean they will show any or all of these behaviours, as everyone with Lowe syndrome is an individual.
Understanding which behaviours are likely to occur in Lowe syndrome means that parents, carers and professionals would be in a stronger position to support a person with Lowe syndrome. This is because they can learn about why this behaviour is happening and develop interventions that are specific to people with this syndrome. Therefore, much more research is needed to identify the specific challenges that individuals with Lowe syndrome face, and how this might affect their behaviour.
Are behaviours that challenge inevitable?
If you are a parent or carer of a person with Lowe syndrome, you may have arrived at this page with a sense of dread combined with worry about the sorts of behaviours that might be described. It is important to remember that behaviours that challenge are not inevitable in any child or adult with an intellectual disability and is certainly not inevitable in a child or adult who has Lowe syndrome.
Behaviours that challenge are behaviours like any other behaviour, and occur for good reasons. Just like other behaviour, it can be changed.
Whilst there is not much research into these behaviours in Lowe syndrome, there is a large amount of research on the general causes of challenging behaviours such as aggression, self-injurious behaviour and destructive behaviour. You can learn about the causes of behaviour and how to manage these behaviours in the following sections of the website: self-injurious behaviour, aggression and temper outbursts.
However, research is currently being conducted exploring challenging behaviour in Lowe syndrome. A few preliminary findings have been reported in three accessible summaries:
This research has been funded by the Lowe Syndrome Trust, and final findings of the study will be disseminated when it is completed.
In the following sections we have made information available to support people while they try to understand and reduce behaviours that challenge. At any point when parents and support workers are tackling behaviours that challenge, it is important to seek advice. Behaviours that challenge can place substantial demands on personal resources- it is easy to feel overwhelmed by the behaviour because it is happening so frequently and because when it happens you feel helpless and unable to deal with the incidents.
At this stage it is important to notice that behaviours that challenge are present, that it is a cause of stress and that it is time to act. This does not need to be done straight away.
The best thing to do is to start to develop a plan of what needs to be done and how you are going to do this. We recommend that you do not try to act on your own. You need to build a team of people around you who you can trust and rely on and have the right skills, whatever they may be, to help you take the right steps. In the following sections we have tried to indicate those professionals who might be able to offer the most available help and support at each stage.