A note on Pathological Demand Avoidance and the price of a day out

Recently Little Miss M overcame demand avoidance and we managed a rare day out. We went to a science museum which we’ve been to a handful of times over the last 3 years. She’d heard they were planning some changes there and wanted to go again before this happened. It was also an opportunity to use their animation equipment to create some stop motion films which she loves. She thoroughly enjoyed herself and the exhibitions and gadgets there but it came at a price.

Getting ready to leave in the morning was difficult. Despite her wanting to leave the house early to get there as soon as possible, demand avoidance kept instinctively slowing things down. We skipped breakfast, teeth brushing and doing anything with her hair and just focused on dressing and going to the toilet. These two tasks, choosing which toys to take to animate with and leaving the house took 2 hours. During that time she was excited and keen to go but also anxious and demand avoidant. We took our time and didn’t rush her, though she still excused herself from the things which needed to be done, delayed doing them and distracted us with chat of her special interests. She managed to do them eventually though and we were on our way.

The journey there was actually really chilled. She was in the mood to play some games on her tablet and listen to some of her favourite music and this time gave her the chance to de-stress a bit from the anxiety around getting ready and leaving the house. We even had a hold up on the way due to a car on fire on the motorway but she was so in the zone of what she was doing, she didn’t even realise. We’d packed a breakfast of her favourite foods to eat on the way but the demand was still too difficult to overcome and she continued to avoid it.

We arrive at the place and she spotted a unicorn Beanie Boo in the open plan gift shop/reception area which she absolutely had to buy. It was the kind of deep-rooted need which if un-met would have become an obsession or fixation which causes major distress. We bought the toy and instantly she went into role-play mode, being ‘Uni’s’ tour guide around the museum. She was overwhelmed with what to do first and with all of the people around and her lack of control over what they were doing. This role-play helped to give her a sense of control over the environment as she could control the outcomes. We wandered around for a bit in this role-play, not really settling on any of the interactive exhibitions there while she tried to get her bearings. We suggested going to the animation area as we thought she’d feel more comfortable and settle there but accepting the suggestion was too much of a demand so we carried on walking around at her pace while she tried to overcome demand avoidance which was preventing her from being able to do any of the fun activities around her.

After a while she suggested we go to the animation area so we headed up in the lift but by the time we got there, even her suggestion of doing the animation became a demand as she then found lots of reasons not to do it straight away. We went with her flow and just walked around upstairs for a while, not really stopping on anything and could see she was becoming more and more anxious about doing what we had gone there to do. As we walked towards the animation area she noticed all of the equipment was being used by other people. The fact she would have to wait to do the animation seemed to help her overcome the demand avoidance around doing it, however the demand to wait took its place and the uncertainty around how long the wait would be made it almost unbearable. She did very well though all things considered. It helped to talk about what her animation story would be about and keep distracting her from the wait with talk of her ideas and general silliness.

Eventually her chosen machine was free. Anxiety was high by this point though and it took her a little while to be able to compose herself and start (she spent a long time talking about the equipment and how it worked and arranging her toys and props). She then asked for her ear defenders as she was struggling with the noise of the people around her on top of the anxiety overload and they seemed to really help as she was able to make a start. She meticulously filmed and edited 4 stop motion animations all together.

After the animation we mentioned leaving soon, so she could get used to the idea. This too was a demand and demand avoidance meant she found lots of reasons to delay the transition including wanting to eat for the first time that day as well as wanting to do some of the other activities on offer there which she had been unable to do earlier. She withdrew into role-play again but as an avoidance strategy this time and became a baby, a tour guide again, a Goddess and a farmer who needed to take us on tours of various other parts of the museum and it took over an hour-and-a-half of flexibility from us and gentle negotiations to be able to overcome the demand avoidance and leave.

She wasn’t able to take any instructions from us on the way back to the car however as her anxiety was incredibly high at this point and distractions and humour weren’t effective. This posed a couple of safety issues in the car park, around moving cars but we managed to get to our car in one piece, albeit stressed but grateful she had been able to walk there (something she has not been able to do due to demand avoidance numerous times before).

The journey home wasn’t as chilled as the journey there. Anxiety was high and even the slightest thing not going to plan or not being exactly how she needed it to be caused a lot of distress and upset including some explosive behaviour. Unfortunately her headphones started buzzing so she wasn’t able to zone out with her DVD player as planned. A cold bottle of water helped to ease things though and she watched her DVD without the headphones on in the end.

Back home with chips and she had de-stressed somewhat, though needed to feel a sense of control over her environment again which displayed through her being controlling and demanding of us for the rest of the evening (and the for a few days afterwards too). We placed zero demands on her until the demand for sleep came around but this was much later than usual with lots of extra requests for things at bedtime. She eventually fell asleep and stayed there until late the following day.

The exhaustion and anxiety from the day out took a great deal of sleep and downtime to recover from and the majority of everyday demands couldn’t be tolerated for the days that followed. It also left her wanting to do more but unable to manage it because in spite of all the difficulties and anxiety, she had an awesome time and so wants to do awesome things every day, however, the realisation that she can’t manage it frustrates her and this affected her mood for a short time. Communicating and processing language was also affected and she found it hard at times to be clearly understood.

My take home from the day was a reminder of just how incredibly hard life is for her and how incredibly proud of her I am for achieving what she manages to achieve. Accessing ‘typical’ experiences comes at what feels like an unfairly high price and I wrote this to acknowledge just how much effort it takes her and others with PDA to overcome demand avoidance and to take part in experiences which so many of us take for granted.


A-Z of Demands is complete

The A-Z of Demands is now complete. You can view the entire series via this link: A-Z of Demands. There’s also a downloadable PDF version and the option to purchase a printed set at cost price plus postage.

I’m working on another A-Z series (A-Z of PDA) which covers the features and characteristics of PDA as well as recommended support strategies. I’ll share one letter of the alphabet each day again and it will begin soon… x

A-Z of Demands

Over on my Facebook page I’m starting a series called A-Z of Demands. Each day I’ll post a different letter of the alphabet, highlighting an everyday demand which, in my experience with my daughter, can trigger extreme demand avoidance and a brief description of my understanding of why. I’ll use the hashtag #AtoZofDemands and put them in this album so they can all easily be seen and shared.

For those of you who don’t use Facebook, I’ll also upload each day’s demand to a dedicated page on the blog called A-Z of Demands (there won’t be notifications sent to you when I do, so remember to visit the page regularly if you want to follow along).

I’m also working on an A-Z of PDA series and have a few other ideas around this theme which I’m planning to do in the future too.

Here’s the first one to get things started – A is for Agreements

A-Z of Demands - A

More information about PDA and advice on how to best support an individual with PDA is available on The PDA Society website:
> Families: https://www.pdasociety.org.uk/families/strategies
> Teachers: https://www.pdasociety.org.uk/education/teachers-guide
> Practitioners: https://www.pdasociety.org.uk/pro…/awareness-matters-booklet


A note on the fear (or intolerance) of uncertainty

My beautiful girl is so stressed by the fear of uncertainty at the moment. Demand avoidance is one thing, one very difficult and challenging thing, but this is something else all together. I cannot reduce life’s uncertainties like I can reduce demands and no amount of distractions will take her mind off the uncertainty she is feeling.

She ordered a toy with some Christmas money from the internet. It’s a very special toy which she felt a strong attachment to from the moment she saw it on YouTube. We found one and ordered it but then the uncertainty began – when would it arrive? It didn’t help that this particular toy had a longer than usual wait time (7-10 days). This in itself caused a great deal of anxiety but it was the only option we had for buying this particular toy. It actually took 6 days to arrive in the end but for the whole of that time she wondered and worried about when it would arrive. Would it definitely come of the 7th day? What time of day would it arrive? Would it be there when she woke up in the morning or could it come in the evening? Would it arrive at all or get lost? What if we were out when the postman delivered it? So much uncertainty.

She didn’t sleep well for the 6 days either. She’d struggle even more than usual to fall asleep from the anticipation of whether tomorrow would be THE day (despite me reminding her it hadn’t been 7 days yet). Then she’d wake up early, hoping it was the day it would come. She even woke up one night having dreamed it had been delivered. She talked about what I should do with it if it arrived while she was asleep and then reminded me over and over. Every knock at the door had her jumping up, thinking it would be the toy and the disappointment was difficult for her to cope with when it wasn’t.

All of the uncertainty increased her anxiety through the roof and as a consequence all of her other difficulties were heightened for the 6 days. Demand avoidance, emotional dysregulation, mood swings, communication were all negatively affected.

The toy arrived yesterday and she was thrilled. Unfortunately that wasn’t enough to reduce her anxiety though and it was the most explosive day so far. I had hoped today would be different and she’d be able to start recovering from the effects of the uncertainty but it now seems she is constantly worried about this toy getting lost or stolen. I have of course reassured her that neither will happen because our house is secure and we’ll take good care not to lose it when we go out but she’s uncertain about this and keeps asking if it will be safe.

I just have to keep reassuring her and wait for her to come to the conclusion herself because in the past that is the only way she has settled over such uncertainties (becoming certain about something in her own mind) and be patient and loving with whatever comes while she gets there.

There has been interesting research by Newcastle University which concluded that intolerance of uncertainty could be the root cause of PDA anxiety and I think this could well be the case. Little Miss M needs to feel absolute certainty as well as control. I wrote A note on the need for control and certainty last year and it was helpful to read it back again this week x

A note on strategies for brushing teeth

Brushing teeth has always been a huge demand for Little Miss M, one which causes a great deal of extreme demand avoidance. A short 90 second task, which a great deal of us do without any difficulty or thought, has her anxiety and fight, flight or freeze mode going through the roof because it is something we are told we MUST do each and every day and with PDA, MUST is something the brain fears. When PDA wasn’t on our radar, we tried sticker charts and rewards and we told her the reality of what would happen if she didn’t look after her teeth and although she clearly didn’t want to have unhealthy teeth and wanted to keep them clean, she just couldn’t bring herself to brush them, even once a day, let alone twice and if pushed her anxiety would escalate quickly. Little did we know that we were making it an even bigger demand for her by doing these things as she felt huge expectations from us to comply. It’s been the cause of a lot of worry and stress for us as parents and the cause of a lot of stress and anxiety for her. I thought I’d share with you though what has helped us to delicately balance the need for her to have healthy teeth against the anxiety and demand avoidance teeth brushing causes her…

We’ve tried every type of toothbrush going and have found an Oral B round head electric toothbrush has the most success, not only because Little Miss M likes that it does the brushing part but because the brush area is small and touching less of her teeth than a manual one (as sensory sensitivity plays a part in her avoidance too).

Another hurdle we had to overcome was the taste of the toothpaste. She has a very limited diet and rarely eats strong flavours and disliked the taste of mint from the beginning. We’ve tried a variety of different flavours and she found them all to be too strong in taste for her. She now uses OraNurse unflavoured, non-foaming toothpaste and this has made such a difference to her ability to tolerate teeth brushing.

We do whatever we can to distract her from the fear of the demand to brush her teeth so avoidance can be bypassed. At the moment we listen to her choice of pop song while she and I brush together and that is proving to be quite a good distraction. We have to change it up all the time though when novelty wears off. We’ve role-played dentists or other scenarios of her choice where I brush her teeth, I’ve told her stories while she brushes, I’ve done funny voices, made up silly songs, we’ve pretended we’re on a quest and teeth brushing is a task we need to complete to fulfil the quest, we gave the toothbrush a name (Mrs Toothbrush) and personality and I did its voice and asked her questions about her day while brushing (she formed quite a bond with Mrs Toothbrush who even came on days out with us for a while), we’ve watched TV while brushing, brushed in every room of the house, had a favourite toy do the brushing, brushed without toothpaste for a time, all sorts of things which appeal to her and distract her from the fear response her brain has to the demand. We re-visit some of them now and again too as they can work again after a while of not doing them.  She still negotiates and it can take rather a long time to get the task done and there are often days when she is completely avoidant but doing something fun to distract her is her best chance of being able to brush her teeth, along with us remaining patient and flexible. 

We also only aim to brush teeth once a day but don’t insist she does it when anxiety is really high or when a distraction doesn’t work and demand avoidance escalates (we may return and try again later but we remain flexible). We don’t have a set time it has to be done, nor do we make it something which has to be done before going out or going to bed as it was preventing us from leaving the house and going to bed. It’s just something that is done at some point in the day if we can and we’ve found this reduces how big a demand it feels.

It can still be hard not to stress over, when we’ve had a run of difficult days and not managed it, but I try not to otherwise she feels my stress and it becomes an even bigger demand and her avoidance becomes stronger. We’re fortunate that Little Miss M will visit the dentist so we make sure she has regular check-ups which help to ease my worry.

I hope this has been helpful and given others some ideas to try around this incredibly difficult every-day task. Do you have any teeth brushing tips or ideas not mentioned? If so, feel free to add them to the comments as it’s great to have more strategies in our pockets, ready to try.

The Wizard’s Wish or How He Made The Yuckies Go Away – A book for children about Emotional Freedom Techniques

I’ve been sitting on this book recommendation for a while now, waiting for the right time to introduce it to Little Miss M. The wrong time would only trigger demand avoidance and potentially close the door to introducing it forever (or at least a very long time because of the fear associated with it). After our conversation this week about anger and masking, she’s open to ideas about how she can safely express her feelings so now felt the right time.

I’ve learnt about Emotional Freedom Techniques (EFT) or tapping as it’s also known from the wonderful Lindsay in her Facebook group Peace With PDA and have seen first-hand how effective tapping can be since using it on myself. If an emotion is bothering me or holding me back, I tap on certain energy points, acknowledging how I feel, accepting that that feeling is perfectly natural and use positive words or affirmation to free myself from the negative effect of the emotion and always feel much better. I also find it really effective in bringing clarity to a situation.

Peace With PDA is predominantly a group for helping parents to use EFT to manage their own emotions and difficulties but Lindsay has kindly touched on using EFT with children as well and recommended this book as a way of introducing them to the concept of tapping.

I downloaded the e-book from Amazon onto Little Miss M’s tablet today, a bargain at £2.21. You can also buy it in print and although she loves books, I thought having it on her tablet would make it even more appealing to her as her tablet is one of her favourite things and it’s easily assessable for her to look at wherever we are (her tablet comes everywhere with us). She was curious as to what I was doing so I told her I was downloading an e-book for her to learn about how she can magically let go of her anger and fears. She was intrigued but not yet ready to look at it (she was keen to play with Daddy though). I left it at that and contemplated whether to raise the subject again today or wait until she decided to look at it of her own accord. I gauged her mood and decided to raise it again this evening and asked her if she wanted to read it with me tonight and she said she’d like to do it there and then.

We read the story (she did the voices of the villagers and told me how I should do the wizard’s voice) and it being on her tablet worked really well as it’s somewhat of a novelty for her to read e-books. She enjoyed the story which imaginatively explained how tapping on parts of your body makes yucky feelings go away and she was really engaged with the idea of her finger being her magic wand and using the magic spell words to make the ‘Yuckies’ go away. We very briefly talked about how we could both use the magic spells the wizard taught the villagers, to help with our anger and stress and we’re going to make a map of the points to tap on tomorrow as a reminder for us both.

I’m really hoping the book has planted a seed for Little Miss M to access this simple but effective self-help tool and I’d highly recommend it to anyone looking to do similar. I’m conscious of it becoming a demand if I don’t carefully word how I encourage it’s use but am hopeful that with gentle indirect reminders of the story and how the wizard used it and lots of modelling doing it myself, she’ll start tapping away the yucky feelings she has.

A note on anger and masking by Little Miss M

Little Miss M and I had a really insightful conversation this week about a characteristic of her personality which she has been exploring a lot lately as well as anger, PDA and masking. It came from this note which she wrote for me which says “Dear Mummy, Let me tell you a secret: I am… evil! (Don’t tell anyone that I am evil – Mkay?)” and the picture is of me looking shocked. She later said I could share this by the way to help everyone understand.

Savage in me

It transpired that she didn’t really understand the true meaning of the word evil but likened it to her becoming ‘a savage’ when she is angry. She recognised that her behaviour at times is what society could class a ‘bad’ or ‘wrong’ and came to the conclusion that this meant she was evil, just like the ‘evil villains’ in films and comics. The term savage isn’t meant literally either but rather as a dramatic description of her behaviour (one of her favourite YouTubers describes his cat as a savage and I think this is where she picked it up from). For quite a while now she has loved The Joker from Batman and his side-kick Harley Quinn and has enjoyed playing the villain type character just as much as she has enjoyed playing the hero type character in games and shows she acts out. She can clearly identify with and see aspects of herself in both.

She appeared very comfortable with this misplaced evil label she had given herself despite saying she wanted to keep it a secret in her note and I felt that was because she felt really strongly that this ‘feisty’ side of her was recognised and understood. She celebrates that she is ‘different’ to the norm and we encourage her to love herself as she is, so this was obviously a side of her that she wanted to address and embrace with my help and doing so opened the door to much more insight than I would have dreamed possible at the tender age of 7.

Here’s an edited version of what she said in our conversation after we talked about that characteristic and I explained the meaning of the word evil. It’s clear to me that she is talking about masking when she says she hides inside, something she used to do up until about a year ago with regards to demand avoidance (she would mask her demand avoidance in public so she could join in with her friends at home education groups and trips). I realise now that she has clearly started to implement masking again in order to cope in public but it would seem to relate to masking her anger since recognising society’s expectations in that respect and masking her fears so they don’t prevent her from doing the things she wants to do…

“I’m not evil but I am a savage when I get angry. I get angry when things go wrong and when I can’t do things. I’m not in control of my anger, my brain controls that but I am in control of what I do when I am angry and when I’m at home it’s shouting, screaming, kicking, hitting, pushing and throwing things. When I’m in public I feel I need to hide my anger inside because I don’t want people to know how I feel because they will think that it is wrong and if I scream in public it makes me more angry. It’s like the anger and the scream collide and make the anger stronger. It’s my PDA which causes this – if you took out my brain and cut it open you would see all the different areas controlling the different things and PDA would be in the middle. It’s not just anger I hide in public, at my cousin’s party (which was back in August) my brain was really nervous because I didn’t know everyone there and I didn’t know if there would be any surprises but I hid it inside. Do you know why I smiled nicely in all the photos? It’s because I couldn’t be myself and pull funny faces or pose like I usually do because I was hiding inside. I really wanted to go to the party and would have been really sad if I couldn’t – hiding my feelings meant I could.”

I reassured her that it is not wrong to feel anger or any emotion, they are all natural reactions and I promised her I would help her find ways to safely express her anger (and all of her feelings) when they first appear rather than hiding them until they build up so much they explode, which is what inevitably happens and she said “just like Queen Elsa! I AM QUEEN ELSA – I’ve been hiding my anger from people, like she hid her magic and now I can let it go!”