A note on the barriers and impact of demand avoidance on my PDA child

A distinct feature of Pathological Demand Avoidance (PDA) is to resist and avoid the ordinary demands of life. This refers to the demand avoidance part of PDA and I think it’s really important to recognise the barriers and impact this has on Little Miss M and other PDAers. Demand avoidance makes it hard for Little Miss M to do so many things each and every day, things many people take for granted, and out of everyone in her life, demand avoidance impacts on her the most.

Avoidance doesn’t necessarily mean that she doesn’t want to do something and demands aren’t just what we, society and other people ask of her, they are also what she asks of herself and what she would like to do. Demand avoidance is her hard-wired, natural response to anything which is perceived as a demand and in our experience, everything is a potential demand, including her own ideas and plans and the things she would like to do…

There are lots of suggestions, instructions and requests she would like to engage with and accomplish, for example:

  • my suggestion to play Minecraft (a game she loves)
  • my suggestion to sign up to Now TV so she can watch full episodes of two of her favourite Cartoon Network shows
  • following instructions to complete a Lego model set which she really wanted
  • me asking her to get the book she wanted me to read to her
  • an invitation to go to a party

but demand avoidance triggers and even though she’d like to do them she can’t.

Other demands such as brushing teeth, washing, eating and changing clothes are necessary bodily needs/self-care demands which trigger demand avoidance. Despite the daily demand avoidance around these tasks, I know that Little Miss M would like to have clean teeth and hair, she’d like to have a bath, she’d like to eat some of the foods she avoids and she’d like to change her clothes or wear particular clothing sometimes but she can’t.

MyPDAlife

Tasks and activities Little Miss M suggests, including things she’d typically find fun or enjoyable, can even be demands and trigger demand avoidance. Many a time Little Miss M has been incapacitated by demand avoidance and the accompanying anxiety when she has an idea to do something. At worst, she is almost paralysed by it and ‘stuck’, unable to move forward. She might shutdown and stop communicating for a while or go into a daydream type trance and occasionally mumble half finished sentences. Or she might continuously postpone the activity or even break-down, overwhelmed by emotions. At best, she avoids the task or activity by immersing herself in something else, but sometimes avoidance prevents her from settling into doing anything.

This can happen at any time and with any of her own plans or ideas, though I’ve noticed it’s more likely to happen when she’s overloaded by other demands or from a social interaction or by worries. It’s not always predictable though and can be triggered without warning.

This layer of demand avoidance is especially frustrating for Little Miss M and overcoming it can feel impossible. When it happens we encourage her to recognise it and give herself time to wait it out, with awareness of what she needs to feel safe and calm, until her anxiety and overload reduces enough and she’s more able to tackle it or move on from it.

MyPDAlife 2

Demand avoidance can and does cause major barriers for Little Miss M to do all the things she enjoys and wants to do in life as well as the things she needs to do which negatively impacts on her well-being and mental health but we’ve found that reducing as many unnecessary demands as possible frees up more room, in terms of time and tolerance, for her to achieve the important ones. Prioritising what’s important will be different for everyone and is ever changing, but for us right now, we prioritise demands based on safety, needs and well-being/mental health (including the things she enjoys and wants to do). This means we reduce or remove demands which don’t impact on any of these areas and focus on using PDA-friendly strategies to help her achieve demands which do.

The strategies which we use every day to try and help reduce the impact of demands and demand avoidance include:

  • indirectly suggesting things
    • ‘planting seeds’ of ideas by mentioning something out loud or leaving something for her to see and wait for the idea to ‘grow’ into an action she is comfortable with
  • using indirect signals that it’s time for things
  • using humour, novelty and fun distractions where appropriate
    • this can sometimes distract her from the demand
  • keeping pressure to do things to a minimum
    • avoiding saying phrases like “you need to”, “you must” and “I really want you to”
  • being flexible about how, when and how frequently things are done
  • having an ‘exit option’
    • saying “if you want to stop or leave at any time, we can”
  • helping her to do things when necessary or doing things for her
  • choosing the right time and carefully balancing her tolerance of demands with potential demands
    • we only approach a potential demand with her or attempt to do it when she isn’t processing something else, has low anxiety and isn’t overloaded by other demands or factors as this is when she has the best chance of being able to tolerate the demand and engage with any other strategies we use to help her achieve it
  • planning enough free-time/downtime with as few demands a possible, especially between high impact demands, events and social interactions
  • giving her extra time to process and respond to a potential demand
    • having enough processing time can sometimes help her to manage some demands like making a decision or answering a question for example, so if she doesn’t reply or respond straight away, we wait for her to respond in her own time. Asking again during this essential processing time can overload her and escalate demand avoidance

And we’re sharing more specific strategies that help Little Miss M to more easily achieve the demands which she wants and needs to do in the #SharingStrategies series on our Facebook page and asking other families and PDAers to share what works for them on the posts too.

Experiencing daily demand avoidance over ordinary everyday things is exhausting and overloading (even with these strategies in place to help, overload can still build up) and Little Miss M needs a lot of free-time and downtime to limit burnout. I’ll leave you with her own words about this but first want to say that I have the greatest respect for her (and other PDAers) for the barriers she deals with every day and the impact demand avoidance has on her. She is my greatest teacher and inspiration x

MyPDAlife 3

#MyPDAlife (link to the Facebook series where Little Miss M shares her thoughts and perspective on life with Pathological Demand Avoidance. She wants to help everyone understand what PDA is like.)

Advertisements