Demand avoidance in children
Some children persistently avoid demands made from them, such as expectations or instructions. Such behaviour is generally considered to be part and parcel of autism spectrum disorder (ASD)[i],[ii]; however, an extreme version of demand avoidance has been described as Pathological or Extreme Demand Avoidance Syndrome (PDA/EDA). Although PDA’s validity as a diagnosis has not yet been established, still, it provides a useful framework for understanding the nature and spectrum of such behaviours.
What are the behaviours in the PDA syndrome[iii]?
The key features of a PDA profile are:
- resisting and avoiding the ordinary demands of life
- using social strategies as part of the avoidance: for example, offering excuses or arguing
- appearing ‘socially able’ but this may mask underlying differences/difficulties in social interaction and communication
- a need for control – becoming the keeper of rules for others, often driven by anxiety or an automatic ‘threat response’
- experiencing intense emotions and mood swings
- appearing comfortable in role-play, pretence and fantasy
- intense focus, often on other people (real or fictional)
- conventional management approaches used in parenting or teaching are ineffective.
Criteria proposed to identify a PDA profile in children with ASDiv
(1) Demand avoidance has been present since early infancy and presented across contexts and time, often beginning with the child demonstrating reluctance to comply with daily tasks, and there is often extreme resistance to requests for activities such as walking with parents when outdoors or to tidy up or take a bath;
(2) Features of demand avoidance are noted in the child during the assessment process;
(3) Avoidance is pervasive and often seems illogical or perverse (e.g. the child may be unable to eat when hungry if requested to do so) and causes significant disruption to daily activities, which leads to parents/caregivers needing to go to great lengths to manage any demand;
(4) Avoidance is not limited to a specific activity (or activities) in a specific context (e.g., reluctance to attend a school or complete homework, for example).
There are many reasons for challenging behaviour in children with or without ASD. Difficulties with executive functions, working memory, and processing speed can all present challenges in learning, creating behavioural challenges in the classroom. Hypersensitivity to various stimuli and uncertainty about the outcome of a change of plan can also cause resistance, anxiety, and challenging behaviour. However, there is often no clear reason for the distress resulting from apparently innocuous requests in children with PDA, and the usual management approaches, such as ‘consequences’, for managing behaviour difficulties appear not to be effective.[iv]
PDA and anxiety
Interlinked dimensions of anxiety, fear, and intolerance of uncertainty[v], commonly seen in children with ASD, and the resulting need to be in control have been proposed to be the drivers of avoidant behaviours in P/EDA.[vi],[vii] Other factors that may contribute to avoidant behaviour in ASD are reduced learning of social norms, difficulty reading intentions, difficulty in making sense of emotions and poor emotional regulation.
To understand an individual’s behavioural response, one must explore the context of such behaviour and the factors that influence or change that behaviour. It has been argued that naming anxiety-driven avoidant behaviours as a discrete entity may not be helpful. Making a demand and responding to that demand is a social process in which two parties are involved. It is possible that some children, including those with ASD, either do not perceive or comprehend the demand or perceive them as unreasonable or irrelevant (Milton 2013)[viii]. Naming the refusal of demands as a disorder and situating it within a child may obscure the influence of the context in which such demands are made.
- Changing the way of making demands or giving instructions:
- Use descriptive rather than demanding language; for example, rather than saying “put the clothes away”, one could say, “the clothes are on the bed I’m happy to help you in putting them away”;
- Create a sense of control and an element of choice, for example, “maybe you could put the clothes away when you have time”.
- Create ideas for the child: For example, rather than saying, “let’s go out and play in the park”, one could create the idea by saying, “ It is such a lovely day outside, I feel like going out”.
- Avoid language that can trigger avoidant behaviour. For example, instead of saying that the child must do something, rephrase it as “ we can try it later if it’s impossible to do it right now” and accept a different choice from the child.
- Motivate the child by turning demands into a game, for example, “let us see who is better at putting this away or sorting this out”.
- Give extra processing time: Some children need more time to process demands and expectations. Use visual or other props to help your child understand, and then give a bit of time before expecting them to respond.
- Model the behaviour yourself without demanding from the child and create a motivating sense for the child, for example, “I know you are better than me at doing this”. Keep the atmosphere light and use humour to make your demands sound like fun.
- Reduce demands: Consider minimising demands. Ask yourselves, “Is this really necessary?” before placing a demand or giving instruction. Reducing the load of demands and expectations may help the child cope with them.
- Plan ahead: Predictability reduces anxiety and gives the child a sense of control. Making plans visible to the child often helps. Sometimes, giving the child an advance notice, for example, “the activity will start in half an hour (or an hour)”, and then reminding the child once or twice during that period, works better than announcing an expectation or a demand out of the blue. Parents need to feel free to be creative with the methods they use for planning and reminding, as long as it is suitable for the child’s age and understanding.
- Low arousal approach or de-escalation: Reduce the chances of the behaviour turning into a major meltdown by keeping your voice and expressions calm and undemanding. It may be better to wait for the child to calm down before discussing the behaviour and what can be done differently next time. As a parent, you’re working for a long term goal, and you don’t need to react negatively to every short term lack of success. Instead, stay positive, and value your relationship with your child above everything else.
- Keep non-negotiable boundaries to a minimum. Discuss the reason for setting the boundary with the child when the child is calm and receptive; at the same time, discuss alternatives and consequences of crossing such a boundary. Always give the child an exit strategy rather than cornering the child and demanding submission.
- Understanding: Understanding that the child’s behaviour is not a deliberate act to annoy others but an expression of their anxiety helps parents deal with their own frustrations and maintain their strategies of working with the child. With this understanding, they can work with the child to create a more functional and less stressful life.
- Reduce anxiety: use ways of preventing and reducing anxiety.
- Children with demand avoidance often do not handle praise well. Give them indirect praise, admire the result of what they have done rather than saying things like “what a good boy/girl”. Try not to show them up even for being good. Instead, give random rewards to keep them happy and maintain a positive relationship.
[i] Newson, E., Le Maréchal, K., David, C. (2003). Pathological demand avoidance syndrome: A necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88(7), 595–600. https://doi.org/10.1136/adc.88.7.595
[ii] Green, J., Absoud, M., Grahame, V., Malik, O., Simonoff, E., Le Couteur, A., and Baird, G. (2018). Pathological Demand Avoidance: symptoms but not a syndrome. The Lancet Child & Adolescent Health 2, 455–464.
[iv] O’Nions, E. and Eaton, J., 2020. Extreme / ‘pathological’ demand avoidance: an overview. Paediatrics and Child Health, 30(12), pp.411-415.
[v] Boulter, C., Freeston, M., South, M., & Rodgers, J. (2014). Intolerance of uncertainty as a framework for understanding anxiety in children and adolescents with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(6), 1391-1402
[vi] Stuart, L., Grahame, V., Honey, E., Freeston, M. (2020). Intolerance of uncertainty and anxiety as explanatory frameworks for extreme demand avoidance in children and adolescents. Child and Adolescent Mental Health, 25(2), 59–67. https://doi.org/10.1111/camh.12336
[vii] O’Nions, E., Viding, E., Floyd, C., Quinlan, E., Pidgeon, C., Gould, J., Happé, F. (2018). Dimensions of difficulty in children reported to have an autism spectrum diagnosis and features of extreme/ ‘pathological’ demand avoidance. Child and Adolescent Mental Health, 23(3), 220–227. https://doi.org/10.1111/camh.12242