Approaches for parents/carers of young people with Pathological Demand Avoidance

Autism and the Demand Avoidance profile are ‘dimensional’ – meaning they vary a lot from one person to another and at different times or with different people – so parents/carers need a ‘toolkit’ of helpful approaches, tailored to each child, applied flexibly and reviewed regularly.

Strategies for coping with demand avoidance (pdf)

Adjusting your mindset

  • Look beyond surface behaviours: outward behaviours are just the tip of the iceberg with many contributory factors lying below the surface. The most important starting point is to understand and accept that a Demand Avoidant child’s behaviours are underpinned by anxiety and a need to feel in control. In addition, any or all of the following may also be underlying and require support …
  • Re-balance your relationship: aiming for a more equal relationship between child and adult, based on collaboration and respect, builds trust.
  • Keep calm: try not to take things personally; accept that some things can't be done; treat every day as a fresh start.
  • Focus on the long-term objective of building a child’s ability to cope rather than short term compliance.
  • Be flexible: helpful approaches require creativity and adaptability.
  • See the positives: focus on a child's strengths and positive qualities and engage with their interests.
  • Support and self-care for you: being in touch with others who are having similar experiences can be enormously helpful.

Support tips for additional underlying difficulties and anxiety and distressed behaviours (pdf)

Optimising the environment

Children with demand avoidance can thrive in the right environment. Top tips include:

  • Balancing tolerance and demands: a child’s ability to cope with demands will vary from day to day and from hour to hour, so make sure to adjust the ‘input’ of demands accordingly (remembering that demands are many and varied) and build in plenty of ‘downtime’ to give space for anxiety to lessen and tolerance levels to replenish. Timing is crucial!
  • Agreeing non-negotiable boundaries: these will vary from household to household and from child to child. For some, the barest minimum of non-negotiable boundaries may be needed when anxiety is very high, but they may be increased over time. Sharing clear reasons for these boundaries, and agreeing on them together, can help.
  • Providing plenty of time: time is an additional demand, so it’s helpful to build in plenty of time. Always try to plan ahead, anticipate potential challenges and allow some flexibility to accommodate fluctuating anxiety levels.
  • Agreeing an exit strategy: knowing how to remove themselves from a situation, and having a safe space to retreat to, can help reduce a child's anxiety.

Being cautious with rewards/praise/sanctions

It can be helpful to understand why these approaches don’t tend to be effective in Demand Avoidance households:

  • Reward incentives create an additional demand on top of the demand itself; they magnify the problem if something isn’t achieved because not only is the ‘thing’ not achieved the reward isn’t earned either; and they don’t address the underlying difficulties which may have prevented achievement.
  • Praise may be perceived as a demand to repeat or improve on previous performance; and encouragement can feel like a demand as it increases the sense of expectation.
  • Sanctions feel unjust when behaviours are a question of “can’t” not “won’t” and may appear controlling and arbitrary when not directly related to the behaviours in question. They tend to lead to confrontation/escalation.

Helpful alternatives and adaptions

  • Spontaneous, tangible rewards.
  • Indirect praise (praising results rather than the child or praising a child to a third party so they hear it indirectly). Providing choices and an exit strategy when offering encouragement.
  • Learning from natural consequences.

Reducing the perception of demands

Re-framing demands to make them feel less like demands is key. There are lots of ways to do this:

  • Phraseology and tone: subtle adaptations to our language and tone can benefit children with Demand Avoidance greatly…

Phraseology and tone - helpful language to use(pdf)

  • Indirect communication: includes physical & visual prompts (with elements of choice and control), holding up a choice of items, post-it notes, or instant messenger apps can work well; leaving things ‘lying around’ for a child to pick up out of natural curiosity; using role play or a third party (adopt the persona of a favourite character or toy).
  • Offer choices: and be willing to negotiate and accept a different choice that still achieves the aim.
  • De-personalising: explain that the requirement is made by some other higher authority (e.g. The law).
  • Distracting/turning things into a game: focus on something else other than the demand
  • Using humour/novelty: humour helps everyone feel more relaxed. With novelty, ensure the change in direction feels like a bonus/benefit for the child.

Whilst it may initially feel like a very steep learning curve to develop a tailored, flexible toolkit of approaches, eventually it’s likely to become second nature as you become more in tune with a child’s strengths and needs. Over time, as a child’s self-confidence, emotional maturity and trust in the world develops, and as they gain more understanding of themselves, they can start to develop self-help tools and coping strategies of their own.

You can further information, help and resources at Information, support and training for PDA website

National Autistic Society provide information and support strategies for adults, parents, carers, and professionals on Pathological Demand Avoidance.

Steph’s Two Girls is a blog and website from Steph a 40-something mum who shares her experience from the point of visiting a paediatrician and considering a diagnosis of autism for her youngest daughter at age 2 years 7 months.