Behaviours of Concern and Autism

Many autistic people are reported to have behaviours of concern, also known as challenging or disruptive or distressed behaviours.

Behaviours of concern are defined as 'culturally abnormal behaviour(s) of such an intensity, frequency or duration, that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities.'

There are numerous possible causes of behaviours of concern in autistic people. For example, some behaviours are caused as much by the way someone is supported - or not supported - as by their autism.  Other behaviours may be caused by the fact that some autistic people struggle to understand what is happening around them or struggle to communicate what they want or need. Behaviours of concern may also be caused by anxiety and stress, sensory processing differences, underlying medical conditions, and specific situations that the person finds distressing.

Behaviours of concern can cause all sorts of problems for autistic people, their families and carers, and society as a whole. For example, they may make it difficult for someone to make friends, to attend school/college, to hold down regular employment or to live independently.

There are a number of interventions commonly used to prevent or reduce behaviours of concern in autistic people. These include behavioural techniques, medications, medical procedures, augmentative and alternative communication, assistive and augmentative technology, psychotherapeutic interventions and physical restraints.

There is very little high quality research evidence on the effectiveness of most of these interventions for autistic people, although this does not necessarily mean that they do not work. There is some high quality research which suggests that some antipsychotics may help to prevent or reduce behaviours of concern in some individuals but the same research suggests that antipsychotics may also cause significant and adverse side effects.

The Social Care Institute for Excellence and the National Institute for Health and Care Excellence (NICE) have each developed guidelines on dealing with behaviours of concern. These guidelines stress the importance of developing a personalised behaviour support plan based on a functional assessment of the behaviours of concern in each individual. 

Further research is needed to examine the impact of behaviours of concern on autistic people (and their families and carers) and to identify those interventions which appear to be effective in preventing or reducing those behaviours in specific individuals. Any future research should also involve autistic people to review the ethical basis of interventions in this area.

Updated

21 Sep 2022