"Dealing" with Demand Avoidance?

Dealing with demand avoidance is a common discussion in online adoption groups and it's certainly a topic that creates a lot of high emotion. The first thing I need to say is that we don't "deal" with demand avoidance.  That word suggests there is a solution with a cure, and also that it is something done to someone.  What we do is try to learn to manage demand avoidance, both in terms of conscious parenting but also in relation to our own emotional self awareness and regulation.  

Pathological/extreme demand avoidance (PDA/EDA) is not the kind of avoidance many regular parents see with their children when they ask them to do something like putting out the rubbish or tidy their rooms (or the dreaded homework). It's not the "I'll do it later or in a minute" that many parents of teenagers feel frustrated about.  Instead it can feel like an energy force that runs through every single thing your child experiences all day, every day. The most important word to get clear in our minds regarding demand avoidance though before we discuss anything else is that PDA/EDA is a case of “can’t” not “won’t”. Once we can understand and fully accept that it's not deliberate, life becomes clearer. 

Katie has demand avoidance or PDA/EDA as part of her alphabet soup of diagnoses. It is a debilitating part of her neurodevelopmental diagnoses, that also now include POTS (Postural Orthostatic Tachycardia Syndrome) which strips her of energy and clouds the boundaries between PDA and POTS. She once explained demand avoidance as like her mind wants to do something but her body won’t let her. It’s like a wave of anxiety floods her body and stops it moving. A freeze/collapse response rather than a fight/flight. She has the same response for things she really wants to do as well so it’s not just a resistance against things she’s not keen on. It’s not procrastination. It’s a debilitating condition that many people cannot begin to comprehend. Whilst we can all relate to the feeling of procrastination, extreme demand avoidance is a very different issue.

What is PDA/EDA?

The main symptoms of PDA involve an ongoing resistance of demands that do not respond to parenting techniques including: 

• refusing, 
• giving excuses, 
• distracting or changing the topic of conversation,
• negotiating or needing to have the last word.
• bombarding with repetitive questions or noises. 
• withdrawing into fantasy world (including using tech).
• complaining of physical impairment - 'my legs won't work'.
• panic-driven physical outbursts or meltdown.

(Copied rom https://www.goodschoolsguide.co.uk/special-educational-needs/help-and-advice/identifying-and-dealing-with-pda)

We hear the phrase "demand avoidance" used a lot these days and it can get confusing as to what it really means.  Demand avoidance, with the symptoms listed above, can lead to a stand alone diagnoses of PDA/EDA in its most specific form but it can also be a side impact of both autism and developmental trauma. I was going to say side effect but I think side impact gives better imagery.  It really can side swipe your child, and us as parents as a result. We often don't see the role playing symptoms as much when demand avoidance is driven by developmental trauma, although I feel that the rise in the use of technology might well have shifted this from the original meaning.  It can be more subtle in behaviours like the child acting as if they were the parent, however this can also be seen with developmental trauma especially in terms of sibling trauma bonds.   PDA/EDA is often seen as part of the autism spectrum (although not yet included in the DSM-V). The need to keep life predictable, as we often see with autism, could also be misunderstood as demand avoidance when it is driven by sensory processing challenges or specific needs not being met.  I also note anecdotally that those of us who parent children with FASD (Foetal Alcohol Spectrum Disorder) often report demand avoidance as part of this condition. This may well be due to the damage the brain has experienced due to exposure to alcohol; resulting in processing and emotional regulation challenges; difficulties with executive function, and the high rate of anxiety that goes hand in hand with FASD.  

As the parent of children with multiple cross over diagnoses it’s often impossibly difficult to pinpoint which diagnoses is driving their reactions.  It can seemingly change from hour to hour and depend on external factors too.  It can also make diagnosis very challenging for professionals.  Diagnosis pathways often follow strict criteria and children who have experienced trauma can often present with a variety of different symptoms that don't quite meet one specific diagnosis.  This can make conditions like PDA/EDA very difficult to fully diagnose and attachment and related anxiety is often considered to be the cause of demand avoidant behaviours.

How it feels as a parent of a child with Demand Avoidance

As a parent we recognise when demand avoidance is part of the diagnostic picture because it can feel like you’re locked in a relentless a battle for control with your child. The neurotypical world sets the expectation that, as the parent, you are in control but children with demand avoidance will seem to not understand or respect that hierarchy.  Again, the terminology we use is important.  Societal expectation dictates that parents are the ones who set the routine and rules and the children will fit into that.  As parents we can feel (and are) judged on our ability to meet those expectations. This can lead to huge parental stress as we try and fail to meet those requirements. We can feel ineffectual and that we have failed as a parent and sadly that is how we are often judged.  To better help both our child and ourselves it is vital that we work to understand the inner experience of our child and learn how to respond both to them and also to the expectations of the outside world.  We have to become very clear about what the needs are we are tying to meet and why.  In my experience, and I know I’m not alone in this, the outcome of trying to meet both the needs of our child whilst often battling the expectations of an uneducated and unsupportive outside world is the development of own complex trauma. This is exacerbated because we are often responding to everything on very little restorative sleep because children with PDA/EDA often have very disrupted circadian rhythms. Katie will often be awake all night and asleep all day, and will cycle in and out of this depending on all sorts of different influences.  I call it living in The Upside Down (thank you Stranger Things for that description).

Katie experiences everything on the list above in a very intense way and prefers to spend a lot of her day on her own.  She is a bit like a tealight whose energy burns out very quickly so she limits her interactions.  She has a formal diagnosis of PDA alongside her ASD diagnosis.  Pip also has recognised demand avoidance however his is due to developmental trauma but he presents very differently to Katie in that he is currently more able to access the world and has more ability to move out of his internal emotional resistance with support.  As noted above PDA/EDA is a spectrum and highlights how each child needs a different response.  I have wondered if there are also other factors involved with Pip such as my earlier recognition of, and response to, his needs compared to Katie. He has been parented in a very low demand style from a much younger age because I have broadened my own knowledge and parenting skill set.  I also now feel more confident in standing against “the system” and its expectations and judgements of me as a parent.  I recognised his distress and took him out of education at a much younger age, although I feel I was still several years too late in doing so and his distress led him to shut down emotionally for about a year.  My own confidence and clarity in communicating with both schools and other agencies has improved, as has my determination and tenacity to fight for what they both need and hold agencies to account, which often doesn't lead to me winning any popularity contests and has led to some experiences that I have found very challenging and upsetting.

With regards to parenting, I now try and follow my instincts regarding what the children need and hope that it all works out over time. Low demand and lots of flexibility is what helps with regulation here however that often feels like we make very slow progress.  In a world full of measurable targets and action plans it’s a very scary journey to be on and often feels at times like I'm crossing my fingers behind my back.  The biggest issue for me is the uncertainty of how things will turn out and the recognition that I have little to no control over any of that.  Embracing uncertainty is one of the hardest elements of adoption on so many levels.  Ideally I’d prefer a manual that is tried and tested but such a manual that incorporates all the neurodevelopmental disgnoses, PDA/EDA, plus ASD/ADHD/developmental trauma and adoption doesn’t yet exist.  It’s far too individual a situation for a one size fits all manual so we have to learn how to parent each child individually and write our own manuals.  As a result of my own ongoing learning, my response/choice as a parent is to prioritise regulation over expectation as we try and heal from everything we have experienced as a family.  I keep the Window of Tolerance firmly in my mind as much as I humanly can (and I am often very human!). My hope is that eventually this approach helps with healing some of the trauma they have both experienced and helps them find their internal balance (and ergo I can too!)

Ultimately due to the nature of PDA the condition ultimately goes hand in hand with trauma. There is a growing awareness now that autism brings unavoidable trauma due to the nature of an individual with autism trying to live in a neurotypical world with neurotypical expectations. Most parents aren’t gifted with the knowledge from birth that their child has autism or any other neurodevelopmental condition. It’s only when their child doesn’t fit into the expectations of the world in a typical way that questions start to be asked and by then life is already proving challenging for the child and that is starting to create trauma.  The same is true for PDA/EDA and developmental trauma.  

As highlighted above, much of our main problem as a parent comes with the fact that demand avoidance can feel like a power struggle when it’s actually more anxiety based. Katie, now 16, struggles with any demands. When she was younger I found what helped most was giving direction without actually asking her. In the mornings I’d lay out her clothes and say something like “I’ve put your clothes ready there. I’m going to shower and then we can go down to breakfast, let me know if you need help dressing today”. Her ability to manage that, even back in primary school, often varied from day to day depending on a whole host of reasons like demands on executive function, sensory, lack of sleep, the weather, the alignment of the stars etc.  These days she has become even more demand avoidant and has created a safe world in her room.  I have to let her sit in an idea for a long time before she feels able to try it.  I have to be creative in how I present ideas.  She can still dysregulate faster than a hummingbird can flap its wings if something hasn't gone to plan; she feels under pressure to do something; or she feels I am not be an adequate parent (what that means in reality is she feels I am favouring Pip in some way so will tell me how awful I am).  Pip will dysregulate if he feels things aren't fair between them so the good thing is the one area they mutually agree upon is that it's my parenting that's to blame.  Get in line I say.  The outside world likes to use that excuse as well.  We have to develop skins the thickness of a rhino to navigate all this at times.

Parenting demand avoidance is tough. I wish I could say it wasn't and offer a definitive parenting style but it’s very much a suck it and see approach because every child will respond differently.  Maybe it would help if I described it as creating your own parenting style rather than "suck it and see" because that’s what it is. It does involve  a lot of trial and error and being able to sit in uncertainty with tremendous patience. I find that very hard. I’ve been on A LOT of courses. Some were more helpful than others but, in hindsight, even the less helpful courses highlighted what wouldn’t work. I’ve created a toolbox of what works for my children and formulated my own style around that and that is what I would urge other parents to do. We are all individual as parents too. We carry our own suitcases of emotional experience and our own style of creativity and that will impact how we parent our children.  What I've found the hardest thing in many ways is navigating the outside world especially the education system.  It is hard to shift out of the conditioning that our children should attend school and achieve exam results. That is how we measure success in our culture.  I often joke that our life is normal until we step outside the front door!  I have mostly stopped discussing achievement with the parents of neurotypical children because we aren't even reading the same book, let alone being on the same page.  It's exhausting explaining how these issues effect the children and I'm exhausted trying to explain it all. 

We also need to bear in mind that our children are not the same as us and we need to focus on getting to know them. We need to throw off the shackles of being like everyone else and conforming to some ideal that someone else has placed on us and society. We have to learn to get to know ourselves better and then we are better able to help our children. Some children respond better to clear routines and other children need a far more flexible approach. The reason I place regulation above anything else is because progress needs emotional safety first. The Beacon House Window of Tolerance explanation has helped me enormously with understanding this for both my children and also for myself. 

Recognising that our Window of Tolerance changes depending on things like the demands placed on executive function and some of the other issues I listed above can help us help our children. We often hear phrases like “oh but they could do that yesterday” a lot with FASD and other neurodevelopmental conditions but when we stop and consider our own experiences of life and how we might more successfully complete a task one day when we are feeling well rested, and we have all the right conditions around us, compared to attempting that same task on a hot day, with a repetitive sound coming from outside, and people talking around us. I have no doubt the latter would make the tasks harder to complete successfully and fully. Yet schools and others have those expectations of all children, not just the children who have other barriers in place too. We hear it from our family and friends, from strangers in the supermarket (usually when we’re managing a meltdown), schools, social workers, doctors and all sorts of well meaning individuals. We, as parents, have to circumnavigate all of that and find a way forward.

So what do I do? For my little family, very low demand along with PACE responses and strategies are the only things that keep things regulated and safe here.  We’re often trying to fit square pegs into round holes which only causes stress for everyone and then we fall into feeling like we’re rubbish parents because we can feel like we have very little power. Working on my own brain responses has helped me stay calm these days. Letting go of worrying about others judging me has helped too although that one will be an ongoing work in progress because I get caught out sometimes. Acceptance that my children just can’t manage things in a neurotypical way has helped me the most. That acceptance clears the way for thinking outside the box and helps me relax more into what is, rather than what others are doing. I’ve had to learn to regulate quickly or walk away rather than raise my voice because that just makes it all escalate and then carnage. I’ve also had to learn to accept when it’s just not going to happen today and adjust plans. 

I will write more about PACE in future posts because I think it’s one of the most helpful frameworks. I had a huge barrier to the P (Playfulness) because I often don’t feel “playful” when I’m struggling with deescalating or regulation but I’ve learned that for me it means being creative with my words and language (no, not the F word although I am human). I’m doing a lot better with Acceptance (A).  I have a lot of natural Curiosity (C) although I’ve had to learn how to explore that in ways each individual can respond to. Katie is very different than Pip in processing her emotions. I have Empathy (E) in bucket loads but what I’ve learned is how to express that with both children so it can be processed according to their own development. Pip understands and expresses empathy very differently than Katie. I’ve also realised that showing myself empathy is important too. That element is often harder for all the reasons I’ve described in this post above. When the world judges you for not fitting into societal norms, self empathy is so hard. But it’s vital we show ourselves empathy. It’s vital that we are honest with ourselves about how we feel as parents and what we feel are our barriers. There is so much shame in parenting and expressing shame is incredibly challenging. Those of us parenting children with developmental trauma often talk about how our children express shame but we also have to recognise that in ourselves too. I highly recommend Brene Brown’s work on Shame and Vulnerability as a reference point for starting this inner work. There are several books and audio books that she has produced that might resonate. 

As a final note, please remember that you are doing the best that you can.  All the frustration that you might feel as a parent of a child with demand avoidance is, dare I say it, normal and to be expected. It's not your child's fault and it's not yours either.  It just is, and it pushes at all the conditioning we've experienced in our lives.  All we can ever do as parents is keep trying to learn and assimilate new information.  We can then keep adjusting our sails.  A better analogy might be rowing a boat because in order to row to a destination we have to row backwards.  Every so often we have to stop and check we're still going in the right direction and adjust our course.  That's all we can ever do.  Oh and maybe stop for a rest from the rowing every so often to recharge our batteries.  

This is how I imagine I could look rowing my boat although I'm reminded of TCM trying to row a boat.  It was the one sport he could never do.  He just rowed around and around in circles.  My life feels a bit more like that most of the time if I'm honest!