A note on overload and burnout

Life is such a rollercoaster with PDA. Little Miss M can tolerate and cope with life in one moment but cannot in another, going from one extreme to another (and sometimes back again) in the same day. Sometimes we go for days with relative stability, finding a balance that works, before something happens which overloads her and stops her from coping, while other times she remains intolerant to life’s demands for an extended period of time, living on edge and finding everything difficult. There are also times when she just seems to burnout and isn’t able to tolerate what she usually can and life becomes incredibly difficult for her.

Our PDA-friendly lifestyle allows Little Miss M to have a lot of downtime, drastically reduced demands and autonomy where possible and we use lots of distraction strategies to help her cope with necessary demands and the things she want to do. This has a positive impact on her quality of life and wellbeing but it does not eliminate all of her difficulties and anxiety. There are still times when she doesn’t feel in control, moments of uncertainty, difficulties with social interactions and her emotions and other difficulties and confusions associated with ASD which all overload her brain and cause anxiety.

Her anxiety levels fluctuate all the time, depending on how many of these scenarios she encounters and how often (which affect her tolerance of demands and behaviour day-to-day) and over time the overload and anxiety accumulate and take their toll on her. Every so often this results in her experiencing periods of burnout where her brain is exhausted and unable to function as it usually does and all of her ASD and PDA difficulties are heightened and become even more difficult than usual as her ability to cope with life drastically reduces.

It will look different for everyone but here are some key features for Little Miss M during burnout:

Demand perception and avoidance are heightened as is anxiety and she’s more likely to explode with anger and frustration very quickly when she feels a loss of control.

She worries about everything and is nervous and on edge for a prolonged amount of time which really plagues her, making each day stressful and scary for her. She needs a lot of reassurance and comfort but it doesn’t really do much to settle her in the moment.

She really struggles to speak and put some sentences together and stammers and repeats words. I think this is the reason she reduces the number of full sentences she uses when asking for things and will instead use one or two word commands. She also has a hard time processing what people say and often doesn’t answer or respond or takes extra long to do so.

Her sleep is rather restless during this time and she becomes even more demanding of us and needs our full attention all the time.

When burnout happens, she needs time to recover and extra support. We’re sympathetic to her worries and fears, no matter how often she repeats them and do as much as possible on her terms in order to give her brain as much rest from additional overload as possible. Her mood can be low as she reflects on her difficulties so we do lots of things to boost her mood and increase her confidence and self-esteem by making her feel valued and loved just as she is. Once her brain is well rested it begins functioning as usual again and her ability to cope returns and her tolerance levels increase.

It’s no wonder burnout occurs from time to time, her brain is frequently overloaded due to perceiving so many everyday things as a threat of danger and her constant need for absolute control and certainty of her environment and those in it is mentally exhausting. Also, while she’s still young and figuring stuff out, emotional dysregulation frequently overloads her too. We hope in time that emotional maturity and understanding will make a big difference but in the meantime, we want to do all we can to help reduce burnout now by reducing overload and the effects of overload and hopefully encourage good habits which will continue to help her in the future as well.

So how are we doing this?

We reassessed our lifestyle and looked at all the things which contribute to overload.  

Her lifestyle is already geared towards supporting her autonomy and individual needs which we’ve talked about in A note on education, A note on demand avoidance and A note on the need for control and certainty but after some reflection a couple of months ago, we identified some areas where we could make some more adjustments in that respect as well as to reduce the amount her brain has to process at any one time so overload won’t accumulate as quickly.

For us this includes:

Re-looking at the demands which are still present in her daily life and reassessing if any more can be cut out or approached differently and thinking about how to make necessary demands even easier so they have less of an impact on her. This also includes thinking even more carefully about the things we say and trying to cut out language which can put pressure on her.

One demand which has always caused a great deal of anxiety is going to sleep. She has always been her most demand avoidant at bedtime and we’ve been very flexible around this while still trying to steer her towards going to sleep at a ‘reasonable time’. After much deliberation we decided to relax even further on this and let her decide when she goes to bed which could be as late as midnight and falling asleep at 1am. This has removed A LOT of anxiety and overload for her and made bedtime a happier time. Consequently she sleeps later in the morning to get enough sleep and unless we have to be somewhere at a particular time, we leave her to wake up naturally. This one adjustment has had such a positive impact and we’ve since discovered Delayed Sleep Phase Syndrome which we suspect may be a factor as well as demand avoidance.

Addressing how we can help social interactions to become less anxiety inducing for her (see A note on social difficulties).

Having an assessment of her sensory profile to find out if anything sensory is leading to overload and so a sensory diet can be introduced to help. This is something we’re still looking into arranging.

Being more mindful about how much information we give her so her brain isn’t overloaded with unnecessary info which she can’t process. This includes choosing the right time (when she’s not already processing something else or stressed) to talk to her about something or ask her a question so she has a clear mind to process the information, keeping it simple and giving her time to process what we say without pressure to respond straight away.

She’s said that she becomes most stressed when we’re in a hurry so we’re making sure we take our time with everything and don’t hurry her (unless absolutely necessary). We thought we were already doing this but on reflection we found there were still times when we needed to rush or we’d ask her to hurry so we’re much more mindful of this when we plan (allowing even more time to leave the house for example) and when she takes a long time to do something (not asking her to do something faster and allowing it to run it’s natural course and take as long as it takes). There are of course times when she does have to go a bit faster for safety or when time has run out for example but we’re very careful with the language we use in these instances to minimise the pressure she feels.

We’re encouraging lots of things which relax her brain and give it the respite it needs as often as possible. [This can be difficult due to demand avoidance of things we suggest but we plant seeds and place things within sight and do them ourselves and then she can choose to do them if she wants to].

For us this includes:

Encouraging repetition which is incredibly calming for the brain because it knows exactly what to expect next so can relax. She naturally loves repetition of things which she likes so this is an easy one but we value how good it is for her and encourage it when we see she needs some respite and downtime. Examples include re-watching a favourite episode of a TV show or YouTube video, re-reading a favourite book, role-playing the same familiar scenario again and again, listening to a favourite song over and over – anything familiar which remains constant so her brain doesn’t have to wonder what is coming next and can relax.

We’ve learnt how relaxing proprioceptive input is for the brain through this video. Little Miss M loves to move, even when she is sitting so we are encouraging this more. We bought her a rocking chair so she can be soothed by the rocking motion whenever she likes and she enjoys going to our local park to swing and bounce on the bouncy sea-saw for more physical movement (this is often in her pyjamas because the demand to get dressed to go out is too much and doing so would defeat the object of going there).

Anticipation anxiety and worries about uncertainties cause a lot of stress and overload so we’ve introduced this concept from GoZen where she can imagine her own still and quiet place whenever she is worried or thinking a lot about things outside of her control. She really engages with videos on YouTube and this one captured her attention because she loves to draw and use her imagination. This has been particularly good to use at bedtime when many worries can come out, even just wishing it was morning already.
[She has made the concept her own by the way and creates a new ‘place’ each time we use this.]

Drawing and colouring really calms her so we have a variety of colouring pages and drawing paper in easy reach along with an endless supply of her favourite pens and encourage it when we can see she needs some respite.
[It’s taken trial and error to get to this stage – colouring books initially caused a great deal of stress when the colours showed through to the page behind so we photocopy the pages for her to colour now and she feared the pens running out so we have multiple packs stored away to replace them when this happens. We also keep all of her work in folders as throwing it away would upset her too much. Once we figured these factors out, colouring and drawing became a great source of relaxation for her.] 

How’s it going?

It’s been a couple of months now since we started addressing this and Little Miss M has fully recovered from the burnout which prompted us to and we’ve seen a definite reduction in how frequently she is overloaded. Life still throws scenarios at her which cause overload but by eliminating the ones we can with these lifestyle changes and helping her recover from the times she is overloaded, she’s literally in a better state of mind and is gradually becoming able to ‘do’ more in terms of days out and activities with her friends.

Burnout may be something she’ll continue to experience throughout her life due to the complex way her brain works but we hope these adjustments will help reduce the frequency with which it happens (if not prevent it at all) and we’ll continue to monitor and adjust our lifestyle and her support as needed so she has the very best opportunity to thrive.

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A note on stress

When Little Miss M’s anxiety levels are particularly high she becomes very demanding and intense. She’ll want my constant attention whether it be by playing her games or watching her do something, she’ll need to be in constant contact with me, either holding hands, sat extremely close, her leg across my lap etc. or calling out to me constantly to do something or to come when I move to another room. She’ll need everything done for her and will constantly ask for things in a particularly demanding way.

She does some of these things in moderation most days as anxiety fluctuates but when they are particularly obvious and intense, I know it’s a sign that her anxiety and stress levels are very high and she’s in survival mode and only has enough executive function and energy to express her needs in this way.

During these times my stress levels increase too, my patience is stretched and it’s exhausting. The lack of personal space is difficult as well. It’s hard to stay calm when all this builds up inside so I try and express how I feel wherever possible. Saying it out loud or writing it down is good, sharing it with others is even better and respecting my natural feelings to the intense pressure I’m under is so important. It’s only natural to feel stressed under intense pressure after all and acknowledging that and giving myself a break for feeling it helps me to more easily express it, which allows my stress to reduce so I am in a better state of mind and can continue to support Little Miss M to deal with her own natural feelings to her own intense pressure so she too can reach a better state of mind.

You see, she’s only doing what comes naturally to her very specific make-up, just like I am. Her feelings might display differently to mine and not in conventional ways and may be triggered more often than mine and by less obvious pressures but they are no less real and deserve the same respect and compassion mine or anyone else’s do.

I value my moments of stress because they give me a glimpse into how Little Miss M feels and help me appreciate how difficult things can be for her when conditions aren’t just right for her needs.

The stress caused by the pressure to be constantly available for her during this time and the lack of personal freedom I feel, must come close to the pressure she feels from everyday things which are out of her control.

I see life through her eyes for a moment and this inside knowledge serves us both well. She’s better understood which leads to more compassionate support for her and I apply the compassion I have for her to myself, ensuring my own feelings are honoured and respected, making everything easier to deal with.

There’s lots of other ways to combat stress but, for me, this mind-set is the most beneficial. Living with PDA can be challenging and stressful for both parent and child but acknowledging and respecting these natural feelings and being able to express and share them with compassionate support enables us to push past the resistance stress can cause in the moment and using my own experiences of stress to see my child’s perspective keeps the compassion flowing for her and for myself.

 

 

 

 

A new strategy we’re using to distract from anxiety and feel in control

I came across this problem solving idea via GoZen: Anxiety Relief for Children last week and thought carefully about how to introduce it to Little Miss M as a tool to help her with any difficulties or ‘problems’ as she calls them. Being mindful of demand avoidance, I decided to mention in passing that I’d seen a cool way our fingers can help us with problems and she really engaged with it.

We drew around a hand each and set to work thinking of our biggest problem solving strengths (I explained this to her as things we’re really good at which can help us with problems). In true Little Miss M style she made it her own by adding finger nails to the hand and drawing pictures to represent her strengths until she got to her thumb, then she wrote the word (kind, spelt cind). I wrote my strengths down too.

This is what she came up with

Finger Strengths
From little finger to thumb:

Imaginative
Good ideas
Being active
Creativity (with her drawings)
Kindness

It was a wonderful insight into the strengths she sees in herself and she was delighted with herself for writing the word cind which gave me a lot of joy to see as did her awareness of the things which help her when faced with problems. 

I explained that whenever we have a problem or difficulty with something we can choose one of our finger strengths to help us solve it. She came up with this little saying which happens to have 5 words too (one for each finger) “choose a finger to help” and enjoyed chanting it while moving her fingers along with the words. She really loves it when she can link numbers to things.

Since then, there have been a few times where choosing a finger strength has been really helpful. Here are a couple of examples:

The first time we used it, she wanted to watch a particular set of adverts she remembered being on a DVD but didn’t know which DVD they were on. She started to panic at this uncertainty, overwhelmed by the fear of not knowing. I started wiggling my fingers and said “I wonder which finger strength could help with this problem” and repeated her chant. This distracted her from the panic and made her smile. She named each of the strengths but couldn’t decide which would help so I suggested maybe the ‘good ideas’ finger might help this time and she said “I know! I could try all the DVDs until I find it”. “What a good idea” I said and as we tried each DVD she was much more calm and in control of the situation. It took a few tries to find the right one but each time it wasn’t the right one she remained calm and focused on trying the next one. Usually, if I’d come up with the solution, she would have panicked more with each failed attempt. This strategy really did give her the feeling of control.

We next used it a couple of days later when she was finding it particularly difficult to go to bed. It was approaching 11pm and demand avoidance was in full swing. She not only didn’t want to go to bed, but didn’t want me to go either. I explained to her that I was very tired and really needed to go to bed soon and asked if one of her fingers could help solve this. She was keen to use a finger but didn’t know which one could help so I ran through them all in a silly and expressive way and together we eliminated the ones which wouldn’t help and were left with ‘good ideas’ and ‘kindness’. She then said “I know! Seeing as you are so tired, I’ll be kind and let you go to bed now while I finish what I’m doing and then I’ll come up”. “That’s very kind” I said. She joined me upstairs about 10 minutes later.

As with any strategy, I’m careful not to over use it because the likelihood for success will reduce if it’s used too often and only use it for Little Miss M’s benefit (when she is distressed or panicked by something, when she wants to achieve something but is struggling or with necessary demands).

So far though, this new strategy seems to help distract Little Miss M from her anxiety and gives her a feeling of control over a difficulty or demand and I love that it’s so simple and the approach used can easily be adapted and tailored to suit each child.

A note on the need for control and certainty

Demand avoidance isn’t the only difficulty arising from the anxiety-driven need to be in control which encompasses PDA. Any uncertainty or loss of control is perceived as a threat of danger that causes just as much anxiety. As a result, Little Miss M cannot handle uncertainty or things not happening how she wants them to; she needs to feel absolute control and certainty of herself, her environment and of situations otherwise anxiety and emptions overwhelm her. The level at which they overwhelm her fluctuates as her overall anxiety levels fluctuate.

Things not happening according to her very fixed ideas and uncertainties around a situation cause her anxiety to escalate quickly to a point where she becomes overwhelmed with emotions the instant she realises it has happened.

I imagine a situation where I’m the most worried I’ve ever been about an outcome, or a situation where all my hopes and expectations are pinned on a particular outcome, something I dreamed of or wished for and it doesn’t work out and I feel the most disappointed and let down imaginable  – that helps me begin to understand how every single uncertainty or thing which doesn’t happen according to her fixed ideas feels for Little Miss M but add to that the fear of not being in control and not understanding her emotions and it’s easy to see how easily overwhelmed she can become.

This can display as anger, frustration, fear, panic or intense sadness and can be directed at other people, objects, herself or the world in general. Things like a game not working on her tablet, the Wi-Fi dropping out, other people not doing what she wanted them to do or doing things she didn’t expect (including using a different cup than she expected for a drink or not choosing the pair of socks she had in mind) or not being understood or able to say or do what she needs to say or do, not knowing how long something will take to arrive in the post or where a missing item could be as well as numerous other hiccups and uncertainties in everyday life.

These situations can only be solved by putting things right according to her fixed ideas of how they should be and the uncertainty during the time it takes to put it right is unbearable for her, her anxiety soars; she can’t concentrate on anything else and cannot rest until she is satisfied with an answer or solution. It’s during these times we really see the sudden changes of mood referred to as Jekyll and Hyde moments. She can suddenly explode with intense anxiety and emotions when something goes wrong and can become calm or switch to happy and go back to what she was doing almost as quickly when they are put right, though she is left noticeably fragile for a short while after particularly upsetting situations and needs more attention from one of us to feel safe again. This is displayed in her being more demanding for a short time while she regains a sense of control. Some things though just can’t happen how she wants or imagined them to and they can easily turn into sheer panic as she realises they are out of her control.

This sheer panic caused by the uncontrollable and uncertainties is the biggest difficulty for us all. So many situations are out of our control and they really rock her world. She has no natural instincts to protect herself from the threat which her brain perceives at these times, unlike the threat of a demand which triggers demand avoidance or the threat of the unfamiliar which triggers her escape into fantasy, the threat of the uncontrollable and uncertainty has no natural coping strategy and she’s left in her anxiety as it increases beyond what she can handle so panic sets in. As parents we want to protect our child from this state of mind and reassure her to make it go away but unless it’s something we can fix with exactly what she needs, our words and comfort aren’t enough to stop the panic. Her need for control turns any solutions which aren’t exactly what she needs into demands which she’ll resist or we don’t have any solutions anyway because we can’t possible predict the future so don’t have the answers she needs. We feel powerless to help because she avoids the demand to do the things we know will help calm a panic attack and no distractions will deter her from her course of thinking so we just have to ride it out with her until she regains enough control over herself to be calm again. She is gradually becoming able to talk herself round. It takes a while but eventually she will tell herself something which calms the panic, it might be a fantastical idea which she believes will solve it or she might tell herself not to worry about it. Whatever it is, she has to come to that conclusion herself and that’s not easy.

Situations and events can trigger this panic but they can also come out of nowhere when she’s feeling particularly anxious. She’ll start panicking about all the random things which are out of her control in life. Things like a toy she lost years ago, whether or not we’ll live in our current home forever, who will die first in our family and getting older and all the changes around this because they are all so out of her control. It could be anything which she becomes aware of having little or no control over or cannot be certain about but time passing seems to be one of her biggest worries when anxiety is high.

So how do we help her with this?

We try to pre-empt potential causes of overwhelm and prepare her for situations which might be out of her control, explaining we don’t always know what the outcome will be but it might be this or that, leaving things as flexible as we can when we know they can’t be controlled otherwise she’ll expect things to happen exactly as you say. If we sense that she is expecting something to happen in a fixed way or we know something might not be as she’d expect, we explain why things might not be able to happen in that way so she is prepared and deals with any anxiety about it beforehand (which is usually less overwhelming than discovering things aren’t as she thought in the moment). We also look out for situations which could trigger her and decide whether her anxiety is up to how out of her control they will be and may or may not take part or go.

We always try to remember her reactions are a sign of her panic and anxiety, and support her calmly and with understanding through these difficult times. And on occasions when one of us is on the receiving end of her anger, we try not to take it personally and support each other with remembering that she does not naturally know what other children know about how to behave and is very confused by her emotions. Autism affects how she understands and interacts with others and it will take time and creative thinking to help her with this.

As far as demand avoidance will allow we are doing what we can to try and make the emotional overwhelm and panic she naturally feels from uncertainties and the uncontrollable less distressing for her and helping her understand her emotions better and how she can express them more calmly.

We talk indirectly about how we can express our emotions safely and calmly by using role-play and talking about other people’s behaviour (often characters in books, films and TV programmes) when they feel similar emotions or draw comic strip conversations with her to help her understand how others feel and have learnt a lot about how she feels in certain situations while doing these also. We adapt how these are done to allow Little Miss M as much control as possible over doing them while still getting our message across. She might choose the colours we use and add background details to the drawings and story and we go with the flow to keep her engaged while carefully keeping the main focus on the subject we are trying to explain.

We acknowledge and validate her feelings around moments of high anxiety and panic and show her that we love her and encouraging her to love herself at these times. This plays a big part in preserving her self esteem so she doesn’t get into a cycle of feeling more anxious about being anxious

We hope that she’ll start to feel more in control of some of the unavoidable hiccups she encounters by building up her knowledge of how to resolve things and this will reduce the anxiety she feels when they crop up.

We plant seeds by saying out loud what solutions there are to problems (ours and hers) so she indirectly hears them and can gradually pick them up and learn them for herself.

We ask her if she can help with ideas to solve ‘our problems’ (things we really know how to solve but pretend we don’t). Sometimes she chooses to help, sometimes she doesn’t but we never insist. Often we’ll just ask the question out loud and see if she offers advice.

We empower her with the knowledge that she has great ideas and can overcome anything. Little Miss M likes to hear that she had a great idea but I know not all children with PDA can take this kind of praise so an indirect approach (telling another person) may suit them better.

While writing this note we came across this idea to help with problem solving and are giving it a go. You trace your child’s hand on a napkin or piece of paper. Have them think of five of their greatest strengths and write (or draw) one on each finger and when they are faced with an adversity, they can pick a finger and use that strength to begin resolving the problem. I’m hoping this will be a good distraction from the anxiety and help her to feel more in control of solving problems. The strengths Little Miss M came up with were using her imagination, having good ideas, being active, being creative with her drawings and being kind.

PDA is a lifelong condition and the need for control and certainty won’t disappear but our hope is that with this support and guidance and all the work we’re doing around reducing her overall anxiety by keeping demands to only necessary ones, she’ll be more able to cope with uncertainties and uncontrollable situations over time and with age so they are easier for her to deal with.

PDA Society’s PDA & Mental Health Webinar

The PDA Society’s PDA & Mental Health Webinar really was excellent, especially the Q&A section. There’s a link to listen to it here and I’ll add it to the Links page on the blog as well.

The key message was around the importance of early intervention to help young children with PDA understand and manage their anxiety and other potential mental health issues which can develop alongside PDA and I picked up some helpful tips to do this and yet again it was so empowering and reassuring to listen to experts and other parents talk about and understand the issues we face as a family.

Some key things I’ve taken away are:

  • Anxiety can be confused as a hungry tummy (I’ve always noticed a link with Little Miss M’s anxiety and her saying she’s hungry) so we’ll be working on helping her to better understand the signs of anxiety as opposed to hunger and how other emotions feel in the body.
  • Researching Dr Elizabeth Shea’s work in relation to food refusal and a limited diet to see if any of her suggested strategies work for Little Miss M as she has a very limited diet and refuses to try new foods.
  • So much more as well which I can’t put into words, except to say I have a better overall understanding of the potential mental health issues which can affect Little Miss M due to her PDA and more confidence in our approach with these issues having listened to the advice in the webinar.

Thank you PDA Society and Dr Judy Eaton, once again.

 

Peace with PDA Facebook Group

There are so many supportive PDA Facebook groups but I wanted to give this one a special mention because looking after you and finding ways to manage your own stress are so important when you’re a parent or carer to a child with PDA.

Peace with PDA is a wonderful space where fellow parents and carers of children with PDA / suspected PDA are supported to find peace of mind and reduce their own stress and anxiety through Emotional Freedom Techniques (EFT) which is also known as tapping. I love it and the lovely lady who runs it.

I won’t go into too much detail to explain EFT as Lindsay does that best but it’s such a simple thing to do. You gently tap on different parts of your body while saying what you are having difficulty with and that you love and accept yourself even though you feel this way. Through tapping  and interacting in the group, my stress and difficulties have felt heard and validated and much easier to deal with. I’m calmer which is great for me and I’m much better equipped to support Little Miss M.

Lindsay is mum to a child with PDA so understands the challenges and stresses and shares her own experiences. She has a background in counselling and working with EFT and is such a wonderful source of comfort, support and inspiration.

Check out the group description for more info and if you feel it’s the place for you, I’ll see you there!
 
 

A note on demand avoidance

Demand avoidance is what gives Pathological Demand Avoidance its name because it’s considered to be so central to the difficulties experienced by a person with the condition. A person with PDA will obsessively resist and avoid the ordinary demands of other people and everyday life. [Masking can confuse things though, and make it appear that someone can co-operate just fine in a particular social setting (including around some family members) but this causes its own set of difficulties when away from the setting].

We initially thought that Little Miss M’s demand avoidance was just a sign of her very strong will and mind of her own, which we totally respected and embraced. As a very small child she would do the opposite of what we asked, she’d resist normal daily tasks like nappy changes, getting dressed, refusing to open her mouth to eat a meal and brush teeth, resisting sleep in every way possible and wouldn’t play games or read books we suggested.

When she could talk she’d start saying no to everything we said and would kick and scream when we tried to get her to do something. Everything we wanted her to do was such a struggle to achieve and she’d always end up in tears. Then with better language skills came excuses and distractions to manipulate the situation to her advantage. She became a master negotiator but rarely did what she’d say she’d do which would result in the struggle just being delayed.

As she got older, anger started to become an issue when she couldn’t have her own way and she’d hit or throw things and slam doors. She’d moved on to ignoring us too when we spoke to her. More avoidance strategies emerged like being an imaginary character who either couldn’t do or didn’t have to do the thing we asked, changing the subject in such a way you have to go along with it (asking questions about very complex or sensitive things which you feel you must address there and then) and many, many more.

It became clear to us that this was more than a strong will, Little Miss M needed to feel in control to an extreme degree due to the lengths she’d go to, to do things her own way and not co-operate with us and how upset she’s get if we’d insist. It became obvious that not having control caused huge difficulties for her. But why?

PDA is best understood as an anxiety-driven need to be in control and avoid the demands and expectations of people and everyday life. This anxiety-driven need to be in control means that Little Miss M’s brain perceives there to be a very real threat of danger when she’s not in control and her fear and anxiety levels increase to an incredibly high degree. Her survival instincts take over and drive her to do all she can to protect herself from this perceived threat. This accounts for many aspects of PDA including why demand avoidance is triggered when she’s faced with the demands and expectations of other people and everyday life.

Demands are all the things she feels she MUST do or must do in a particular way. It’s this feeling of having to do something which puts it out of her control and everything has the potential to do this, even her own ideas can sometimes become a demand because the pressure to do them becomes an expectation she must meet. Pleasant things like being offered an ice cream or a fun game to play can even become unpleasant when it feels like a demand because they aren’t within her control. Everything has the potential to feel like a demand when it comes from someone else or when there’s a set time to do it or a time limit attached, when there’s an expectation to do it, when it interferes with what she wants to do, when there are instructions to follow and many other complicated reasons which aren’t always clear. Her ability to tolerate demands changes all the time too, making her reactions difficult to predict.

What is clear though is what demand avoidance looks like so whenever we see this challenging behaviour in Little Miss M, we know she’s experiencing anxiety and it’s a cue to us that she needs support to feel more control. Demand avoidance can take many shapes nowadays including all the things we mentioned she did when she was younger. What she will do to avoid a demand depends on how much control she feels she has lost and what her overall anxiety levels are at the time. If she is resisting, taking charge or becoming distressed and upset or angry and aggressive though, we know the situation is out of her control and causing her anxiety.

So how do we manage this?

With tons of love, patience, flexibility and respect for her needs and dealing with everything on a moment by moment basis because her anxiety levels fluctuate all the time. We remember it’s a hidden disability and that it’s her behaviour which makes it visible.

We ensure our lifestyle and her education allows her to have a lot of autonomy and we’ve removed as many unnecessary demands as possible so she isn’t constantly bombarded with demands and overloaded with anxiety. This makes life easier and happier for her and gives her more opportunities to accomplish and achieve more because she’s in a better state of mind. We are especially relaxed about her biggest triggers (bedtime and food), allowing her a lot of control and choice in these areas so she feels more in control of them and views them as less of a demand and we go with her flow and what she is up to doing as often as possible so she feels as in control of the days as possible.

For demands which are necessary, we’ve established helpful strategies to try and help distract her from the feeling of danger. They only have a chance of working if her overall anxiety is low, so the autonomy and reduced demands above have impacting on the frequency of these working. Presenting a potential demand in a way that gives her control and/or with humour, silliness and in a way that appeals to her (usually imaginary play and being characters she loves or using her special interests) can sometimes distract her brain from the fear response and help her to overcome demand avoidance.

She’ll always need an element of control over how something is done for this to work, otherwise she will do all she can to avoid the demand and regain control so we don’t worry so much about how something is done, just that it’s done with the least amount of anxiety possible. We think of this as an opportunity to work with her to figure out a way to overcome a difficult situation. We listen to her, empower her with a say in how something could be done and support her with doing that so she feels safe and in control. This can make some things more achievable but not all.

If demand avoidance is triggered, for whatever reason, we first and foremost always remember she cannot help doing it. It’s not a choice to react this way or a learnt behaviour; she has no control over it. It’s her brain reacting to what it perceives as danger and anything she does is a reflection of her fear of that very real feeling of threat, no matter how irrational it may appear to us. We don’t take it personally and try to remain calm while acknowledging her feelings.

Once we’re in her shoes and can see the situation through her eyes and appreciate how her anxiety feels, we assess whether or not another distraction will work. Most of the time, this means trying it but if her reaction to the demand is indicating very high anxiety levels, we know distraction will be ineffective and only serve to increase her anxiety further. We have to be very creative with distractions, quickly thinking of something which appeals to her or makes her stop and laugh to defuse her anxiety and shift her attention away from the fear of danger for long enough to be able to involve her in how we can achieve the task in hand. This is ideal because it’s giving her some control over the situation again by allowing her to be in control of how she does it. Flexibility and patience is key here.

If distractions don’t or won’t work and it’s not essential to carry out the demand straight away, we won’t push it but also try not to set another time for doing it because this is usually agreed to at the time but inevitably never happens because the expectation to do it at a set time becomes an even bigger demand. We do make it clear we won’t do it now though so she knows the threat has gone away and her anxiety can start to reduce. Then we try to re-visit it at a later time when her anxiety allows. We are flexible though and if her anxiety doesn’t allow for it, and it’s not necessary for today, it will wait for another day. If it is essential for that day, we continue to be calm and patient, doing whatever we can to help her anxiety reduce so we can achieve it when anxiety allows.

Understanding Little Miss M’s demand avoidance and her anxiety has made us re-evaluate what things really are necessary and how important it is they are done in a particular way. Things we would have thought essential before are no longer as vital in our thinking now, not when we realised how much anxiety and distress they can cause if pushed at the wrong time. Having a bath on a high anxiety day isn’t essential, nor is changing out of pyjamas. Her doing certain things herself isn’t essential every day and we know she’ll do them when she can. A biscuit or snack just before bed or in bed to reduce anxiety is OK as is falling asleep later if needed. Brushing her teeth on the sofa while watching TV is better than not brushing them at all and some days not brushing teeth at all is better than a meltdown…

It’s a journey though and none of this happened over-night. We still don’t always get it right and don’t always know what to do because nurturing a child through PDA is a challenge; everything takes careful consideration and thought and it can be exhausting and time consuming to achieve the simplest of things. Demand avoidance isn’t the only difficulty arising from the anxiety-driven need to be in control either and those additional difficulties are just as challenging and in some cases more challenging and take huge amounts of stamina, patience, understanding and flexibility to support and nurture. But we do our best and with each challenge we learn a little more to help us all to grow.